What made this year different? The answer lies largely in changing political winds, on both the state and national levels.

Nationally, the past eighteen months have witnessed an uptick in popularity for policies of psychiatric force among Democrats. In December 2022, New York City Mayor Eric Adams unveiled his controversial “involuntary removals” policy, allowing for the involuntary psychiatric detention of largely unhoused people who “appear mentally ill” in public.

In September 2023, California Governor Gavin Newsom’s Community Assistance, Recovery, and Empowerment (CARE) Court, which bears similarities to AOT, became law. CARE Court forces primarily unhoused people to accept court-ordered psychiatric interventions; any noncompliance with the orders could be used as evidence in a future conservatorship hearing.

And last month, California’s Prop 1, also championed by Governor Newsom, passed by a razor-thin margin. Prop 1 upends the millionaire tax-funded Mental Health Services Act and will reduce funding for voluntary, peer-delivered, and culturally-specific supports. Prop 1 also establishes a $6 billion bond, some of which would go toward building locked facilities to confine unhoused people who use drugs or have psychiatric disabilities.

These recent policy developments have a long, complex historical context. For over fifty years in America, pro-force family advocacy organizations, closely allied with the medical and judicial establishments, have worked to roll back the clock to the days when they had more legal control over the lives of those under their care.

Since the 1990s, the assault on the civil liberties of people deemed “severely mentally ill” has been led primarily by the Treatment Advocacy Center (TAC), a well-funded group whose efforts are fueled by a national grassroots network of family advocates. TAC can be said to be largely responsible for the spread of involuntary outpatient civil commitment laws throughout America. Early on, family advocates rebranded the law to the more politically palatable and benign-sounding “Assisted Outpatient Treatment,” and commenced selling their courts-as-care formula to politicians, the media, and the public.

AOT is not just a law; it is a philosophy and an approach that centers around “anosognosia,” a pseudeoscientific notion that a small subset of individuals labeled with serious and persistent mental illness are too ill to know they need help. Therefore, they must be “assisted” into a regime of civil courts that would theoretically ensure their ongoing treatment under supervision. In reality, the laws are drafted with fairly broad eligibility criteria.

True believers in AOT co-opt language from human rights and disability rights principles, claiming that it is a “less restrictive alternative” to jails, prisons, and psychiatric incarceration. Yet, in many of America’s underfunded and under-resourced community-based systems, it is often impossible for people to access care until and unless they are in a crisis. The help that is on offer is often largely biomedical in nature, with social determinants of health such as housing and community support left unaddressed, fueling cycles of distress.

Proponents of court-ordered treatment also frequently argue that it is voluntary. But coercion and force are baked deeply into these laws, from the “Black Robe effect” resulting from a judge’s presence in the room; to treatment orders that one usually has little say in or choice over; to the ever-present possibility of forced evaluation, hospitalization, or conservatorship for noncompliance.

How AOT came to Maryland

Maryland’s 2024 legislative session took place against the backdrop of policy changes favoring mandated treatment in New York and California. As with California’s proposals, this year the demand came from the top, with Maryland’s newly-elected Democratic governor Wes Moore making AOT a central part of his legislative agenda soon after election.

Governor Moore’s reasons for championing the legislation may have had something to do with his tenure as head of the Robin Hood Foundation, an anti-poverty nonprofit based in New York. Proponents of AOT widely view New York’s program as the gold standard, despite reports finding glaring racial disparities in its implementation. The governor’s own chief of staff, Eric Luedtke, has spoken openly about a family member’s diagnosis of schizoaffective disorder, and even testified in favor of the bill in February. A new senior health official, Deputy Secretary for Behavioral Health Alyssa Lord, also previously hails from New York, and Secretary of Health Laura Herrera Scott completed her medical degree there.

Courtney Bergan, a Maryland attorney who identifies as a person with lived experience of involuntary institutionalization, told Mad in America that once the Moore administration sponsored the legislation, most opposition to the bill vanished. “The Democrats were like, ‘We don’t want to go up against a Democratic governor.’ That’s really what it came down to.”

Advocates immediately found the broad eligibility criteria alarming. Those with a “history of treatment nonadherence” who have had two hospitalizations, even voluntarily, within three years; or have self-harmed or attempted self-harm; or attempted suicide or an act of harm to others; or have made credible threats of harm to others during a three-year “lookback” period, would be deemed eligible for the program.

Under these criteria, “Essentially anybody with a mental illness could be put into AOT,” Bergan said.

Any adult with a relationship to the respondent can file the petition—as psychiatrist Dinah Miller wrote on X: “your mom, your kid, your roommate, your ex.” To move forward, the process requires the sign-off of only one psychiatrist, contravening Maryland’s own involuntary treatment certificate that requires two evaluators to agree.

Sole evaluators are “undeniably vulnerable to bias, whether explicit or unintentional,” according to testimony submitted to the legislature by On Our Own of Maryland, which coordinates the longest-running statewide network of independent peer-operated organizations in the nation. “This bill seems to propose much lower standards for civil commitment.”

Of equal concern to advocates was the near-unlimited range of interventions that would theoretically be allowed in a court-ordered treatment plan, including electroconvulsive therapy (ECT) or long-acting contraception.

Last month, Senator Clarence Lam, one of two physicians in the state legislature, introduced a bill amendment that would ban the involuntary use of long-acting injectable antipsychotic drugs and ECT in AOT orders. It would also protect reproductive rights by prohibiting a judge from ordering non-psychiatric medications or devices such as birth control implants.

Senator Lam’s chief of staff Scott Tiffin told Mad in America that the legislator had been hearing about AOT for years from Disability Rights Maryland, the public defender’s office, and others. He had examined the medical ethics literature on ECT and informed consent, and had seen troubling precedent involving judges’ violations of respondents’ reproductive rights. An AOT judge in Ohio had pressured a respondent to take long-acting contraception, and a guardianship judge in Massachusetts ordered a woman to have an abortion and undergo sterilization.

During their March 29 meeting, Finance committee members entered into an extended conversation about Senator Lam’s amendment, with some defending the practice of ECT. “ECT is a good thing and people should get it—that’s basically what was being said,” Bergan said. “It was wild.”

Senator Lam attempted to clarify his rationale to his colleagues: “…Because [ECT] is a very extreme measure, has some history there, can we put some limitations on that specifically?…Is that boundary a little bit too far for this to be ordered by a judge on someone without their consent?” But with scant support from fellow legislators or the Department of Health, Senator Lam withdrew the amendment at the next Finance committee meeting.

“I continue to be concerned about the lack of reasonable guardrails in the AOT bill,” he wrote in a statement emailed to Mad in America. “But, I hope the Department will take seriously the concerns about the rights of potential AOT patients as they begin implementation. I think it was important that the General Assembly included a five-year sunset on this bill so we will be able to keep a close eye on implementation.”

There was one small win in the bill, in the provision on psychiatric advance directives, highly under-utilized legal documents that outline a person’s wishes regarding treatment. A previous version of the bill said that such documents would be “considered”; in the final version, that word was crossed out and changed to “honored.” While the language reflects the aspiration that psychiatric advance directives will be respected in practice, nationwide trends do not bear this out.

A choice movement for mental health in Maryland

New, independent coalitions have emerged to challenge the steady advance of involuntary outpatient commitment laws. Californians Against Prop 1 and partners were nearly successful in defeating the ballot measure, forcing the governor to scramble for votes.

In Maryland, Bergan launched the “My Mind, My Choice” coalition, inspired by the messaging of the reproductive rights movement. “I want people to see that this could be them,” she said.

“What would you want if you were in this position? Do you want to be forced to take a medication that you feel has really harmful side effects? I want to change the narrative on this and make it about choice.”

The coalition is pursuing a multifaceted harm reduction approach to the new landscape. One strategy is to establish psychiatric advance directive clinics throughout the state to help people develop the most legally-sound documents. Another idea is to create a hotline for those facing inpatient and outpatient civil commitment, where anyone petitioned could obtain quick, free legal advice about their rights.

Advocates in Maryland are also exploring the promise of self-directed care, an approach to supporting people who would otherwise meet criteria for involuntary outpatient commitment that aligns with human rights principles of choice and bodily autonomy set forth in the UN Convention on the Rights of Persons with Disabilities.

This legislative session, Senator Lam introduced a self-directed care pilot bill drawing on the success of such programs in other states such as New York, Pennsylvania, Texas, and Utah.

This approach addresses underlying material issues driving participants’ distress by providing individualized peer support and funds for an array of supports they want and need.

While the bill did not move this year, Bergan said advocates hope to raise awareness among stakeholders and policymakers this year to galvanize support in 2025.

And then there were two…

Supporters of the law in Maryland adopted a narrative that AOT signified progress, claiming that their state “lags behind” those with involuntary outpatient commitment laws on the books. The bill noted in its preamble that only three states in the nation still lacked the authority to institute court-ordered mental healthcare. Now, just two states remain: Massachusetts and Connecticut.

Like Maryland, Massachusetts’ coalition has had to fight efforts to expand involuntary treatment annually, and this year is no different. At this writing, advocates are awaiting the outcome of a committee vote that will determine whether this year’s involuntary outpatient commitment bills, H.1694 and S.1238, will advance to the next phase of the legislative process.

Sera Davidow, executive director of the Wildflower Alliance, a Massachusetts peer support, advocacy, and training organization dedicated to harm reduction and human rights, told Mad in America that she has been tracking recent developments in Maryland as AOT returns to her state legislature. To educate and inform community engagement, she created an Involuntary Outpatient Commitment Information Center with a petition, sample letters to legislators, and videos featuring people who’ve experienced court-ordered psychiatric intervention. In one video, Earl, who identifies as a parent and a person with psychiatric history, said, “It’s going to make people go to the fringes. It’s going to make people hide, it’s going to make people run away.”

Wildflower Alliance and allied communities in Massachusetts are trying to build up non-coercive, human rights-based supports, circulating a petition in support of a significant peer respite bill currently moving through the state legislature. Davidow, along with Wildflower Alliance peer respite director Ephraim Akiva, advocate Thomas Brown, and Mental Health Legal Advisors drafted the bill, first introduced last year. It would fund at least one peer respite program in each of the state’s 14 counties, including the first two LGBTQ+ respites in the world.

The prospects of an involuntary outpatient commitment law passing in Connecticut remain slim for now. The administration and the legislature have not been enthusiastic about adopting the law over the last 25 years, and most statewide advocacy groups oppose it. Kathy Flaherty, executive director of the Connecticut Legal Rights Project, submitted testimony during Maryland’s legislative session this year noting that in her state, “Much time and effort has been expended on examining IOC, only to have the legislature reject it each time it is proposed.”

For her part in Maryland, Bergan remains steadfast, even as a potential bill looms in 2025 that could remove a key administrative barrier to rebuilding locked psychiatric facilities. “I just want people to know that even though it seems like we’re freaking failing, I’m convinced that it means we just need to be louder,” she said.

***

Editor’s Note on May 6, 2024: This article previously stated that Dr. Laura Herrera Scott was from New York. It has been updated to indicate more clearly that she earned her medical degree there.

***

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The post Maryland Enacts a “Draconian” Assisted Outpatient Treatment Program appeared first on Mad In America.

Linda Andre spent the last eight years of her life institutionalized at the Manhattan Psychiatric Center, where she died by suicide this month at age 63.

She was perhaps best known for her 2009 book Doctors of Deception: What They Don’t Want You to Know About Shock Treatment (Rutgers University Press), a finalist for the Investigative Reporters and Editors Book Award, and hailed as “brilliant analysis” and “a masterpiece of scientific writing” in a review by Stefan Kruszewski MD in the International Journal of Risk and Safety in Medicine. 

Prior to receiving shock, Andre had been a young, talented, and prolific photographer and writer on photographic theory. In Doctors of Deception, she wrote about the unquantifiable, permanent harm she experienced at age 24 from 15 coerced shock treatments at New York Hospital: “My life was stolen. No words can really describe it. Memory. Loss. Forgetting. None of them even come close.”

Andre’s activism began in 1985 soon after she’d endured ECT, when she began attending the New York living room gatherings of psychiatric survivor resistance group Project Release, said Laura Ziegler, a fellow mad activist who met her through the organization, worked on shock issues with her, and helped her research her book.

She wrote in Doctors about finding solace in her fellow ECT and psychiatric survivors, particularly acknowledging Marilyn Rice, founder of the Committee for Truth in Psychiatry (CTIP), who became her friend and mentor: “Marilyn was the one person I could call at 3 A.M. to talk about all this stuff.”

After Rice’s death in 1992, Andre took on her role as director of CTIP. She credited inheriting her mentor’s “voluminous” archival material as indispensable in the research and writing of Doctors.

In a 1993 tribute to Rice in Disability Studies Quarterly, she wrote of the life-changing magic of survivor solidarity and support: “Marilyn’s greatest legacy may be the impact she had on the lives of so many shock survivors…I honestly don’t know where I would be today if I hadn’t known Marilyn.”

Andre furthered her mentor’s fight and legacy. Ron Thompson, another fellow activist who knew her since the late 1980s, said: “Linda never backed down from a confrontation with any of her ECT adversaries, especially arch-ECT proponent Max Fink.”

A tribute published on the website of the National Association of Rights Protection and Advocacy (NARPA) notes: “As an activist Linda was a researcher, organizer, spokesperson, lobbyist, writer, muckraker, and gadfly—as well as a target for smears by the industry she exposed.” Her persistent efforts gained her national visibility, with interviews and appearances in major media including 20/20, The New York Times, The Washington Post, and The Atlantic.

The NARPA tribute also characterizes her as “a wellspring of information, validation, and support to countless shock survivors who found their way to her.”

Shock survivor Dorothy Dundas said of Andre: “I shall always be grateful to Linda for writing her amazing book, the bible to many of us who were lucky enough to survive the atrocities of ECT.”

ECT survivor and activist Sarah Price Hancock did not know Andre personally but told Mad in America of her tremendous impact on her work. “Her meticulous research laid the foundation for peer-led patient safety advocacy efforts…She is gone too soon. I promise to carry the torch she lit. We’re at a point in ECT informed consent and patient safety advocacy that her torch is becoming a vibrant, bright beacon—shining a spotlight on truths previously kept from patients, families, and the public at large. I wish she was here to witness what lies just over the horizon. Her warrior spirit remains in our hearts.”

In addition to Andre’s activism, she also wrote a blog from 2005-2010 called Grandma’s Gone Surfing, which detailed her experiences as a forty-something learning to surf in the Rockaways and which seemed to bring her joy, recalled Susan Rogers, fellow activist who’d organized, written, and protested with her.

In her final years, Andre continued to advocate as director of CTIP. In a passionate 2016 letter opposing FDA’s decision to down-classify ECT machines, she wrote: “Now FDA intends to put the ECT device into the same category as an X-ray machine. But no one who ever had an X-ray ever got off the treatment table missing five, ten, or twenty years of their lives.”

She was laid to rest in a private ceremony in New Jersey on September 20 and is survived by her son, Alandra Markman, and brother, Robert Andre. Markman is planning a public memorial in New York, which will be announced in the coming weeks.

***

Remembrances of Linda Andre

Readers may send their remembrances of Linda Andre to rwhitaker@madinamerica.com, and they will be posted here. Here is a link to a video of her giving testimony about electroshock on August 31, 2000.

Janna Weiss

We buried Linda on Wednesday September 20. She took her own life on September 2, 2023.

Present at the funeral on September 20, 2023:
Alandra Markman – Linda’s son
Robert Andre – Linda’s brother
Connie (Constance) Lesold – long time friend of Linda Andre and activist
Susan Rogers – ECT activist
Phillip Bennett, former board member, Disabled in Action, interviewed Linda for WBAI The Largest Minority
Janna Weiss

A few years ago I compiled as much of Linda’s hospitalization history that I could find.
Her hospitalizations started in 2010, less than a year after her book was published and before her planned NY Times interview. She was hospitalized every year subsequently, for three to five months each time, until she was held continuously for almost nine years.

She was continuously hospitalized from November 5, 2014, and transferred to Manhattan Psychiatric Center (MPC) on March 31, 2015. She was moved to the MPC Transitional Living Residence (TLR), also on Wards Island, on February 22, 2017, where she remained until her death on September 2, 2023. She was force drugged and force hospitalized.

When Linda was moved to MPC TLR, she still had a court appointed guardian. In January 2020, the court granted Linda’s motion to remove the guardian, but we were unable to save the apartment. In December 2018, Linda was evicted from her 2-bedroom affordable housing apartment, a Mitchell-Lama co-op that she owned. Linda refused whatever housing options that MPC TLR offered, such as SROs.

I first met Linda in January 2016, in an MPC closed ward. Seth Farber (of blessed memory) sent an email asking if anyone would be willing to reach out to Linda. I called Linda and asked her if she wanted me to visit, and she said yes. I had just started teaching in Manhattan and visited her 14 consecutive weeks during that semester and less frequently after that.

Laura Ziegler asked me to tell Linda about the FDA hearing on downgrading the ECT device. Linda gave me a handwritten statement that I typed up and that was submitted to the FDA on her behalf in March 2016.

At Linda’s request, Dan Fisher interviewed Linda in September 2016. Linda was subsequently discharged to the MPC Transitional Living Residence on February 22, 2017. She was discharged from the closed psychiatric ward, but not from MPC.

Linda and I did many things together—we went out to eat in Manhattan and Queens many times, which she enjoyed, traveled to housing court and guardianship court together several times, to file papers and attend hearings. Other friends also came to the hearings. We picnicked at the TLR stone tables, sat on the grass together, watched and fed the squirrels and birds, and ate pizza that I brought from 125th St in the TLR dining room. We walked the path of Wards Island Park. We visited her apartment twice, shopped for clothes and shoes, and did other errands together.

Linda stayed in my apartment 18 days and nights during 2018, over eight consecutive weekends, including one 4-day Memorial Day weekend. The hospital stopped her visits to my apartment because they didn’t know if she was taking her psych meds.

During those first 14 weeks in 2016, I shared as much of the mind training practices that I was teaching with Linda as I could—my handouts, quizzes and tests. When Linda stayed in my apartment in 2018, I read almost all of Awakening Loving Kindness by Pema Chodron to Linda aloud.

One lovely memory is when we sat together for hours under a tree on the grass in the sun beneath a looming MPC tower. I read 16 Guidelines for Life: The Basics by Alison Murdock and Dekyi-Lee Oldershaw aloud, stopping after each chapter to ask if it was enough or if she wanted another one. Each time, Linda said, “Another one,” and picked another chapter. We read most, if not all, of the book together, chapter by chapter, that day.

The day of her death, I went to MPC TLR and recited prayers next to her body that was laid out in a body bag on the floor. Then I met the medical examiner who was very compassionate. He asked me about Linda and I said that she was the author of Doctors of Deception: What They Don’t Want You to Know About Shock Treatment. He asked if “doctors” referred to all doctors or only to psychiatrists. I said, “Only psychiatrists.” He was very very compassionate.

Linda was a courageous activist to the end. I hope that Linda’s death results in more compassion for all, and an end to forced drugging, forced hospitalization, and electroshock (ECT, electroconvulsive therapy).

On Friday September 15th, the hospital held a memorial for Linda outside on the grass by the tree where Linda often sat. At the memorial, the executive director of MPC, Dr. Brian Belfi, said that MPC planned to create a permanent memorial at that same place outside TLR.

Linda is buried in Forest Green Park Cemetery, 535 Texas Road, Morganville, NJ. She is survived by her son, Alandra Markman, and her brother Robert Andre. Born December 20, 1959. Died September 2, 2023. She was 63 years old.

***

Laura Ziegler

Linda Andre first came to Project Release at a meeting in Louise Wahl’s Manhattan apartment in early 1985—not long after being subjected to electroshock. She was introduced to Project Release by Allen Markman, who produced the Madness Network show on WBAI and was a Project Release member. Linda sat on the floor and seemed subdued, detached and sad. I remember Allen complimenting her on her clothes and calling her “the Frances Farmer of the movement.”

I remember another Project Release meeting, either that year or the next, at Linda’s apartment on St. Mark’s Place. Years later, I described to her how she’d strolled around during that meeting, seemingly indifferent or oblivious to what was being said, as if she was walking along a beach. She replied, “I was organic then”—meaning, organic brain damage. Despite knowing what electroshock did to people’s brains, I still hadn’t made the connection. But, as a shock survivor, Linda didn’t have that luxury. She lived the connection every day.

In 1985 Linda participated in a madwomen’s radio presentation on WBAI. About her life after shock, she said, “And they all say the same thing, over and over again: ‘But you look so good.’ Because what does a woman need a mind for, anyway?”

I remember painful phone conversations with Linda, arguing to her that she shouldn’t suicide. One evening I called her from Long Island. She answered in a slurred voice and seemed so out of it, I thought I’d interrupted an attempted overdose. I called Allen Markman and he went to her apartment. What had happened: Linda went to some clinic complaining about insomnia. She was prescribed what she assumed were sleeping pills and had taken some to sleep. But the pills were neuroleptics. They wore off, but under their influence she’d fractured her toe and dropped her watch in her cat’s water dish.

In the fall of 1987, Linda asked me to accompany her to a TV studio where a new show hosted by Morton Downey Jr. was being recorded for WWOR. She asked me because, while not a shock survivor, I was a fellow activist who was public about a personal experience: I was promised/threatened with shock when locked up, to try to keep me from pursuing a court hearing.

The episode was never aired. Afterwards, Linda told me a woman on Downey’s staff complimented her on her legs and said she wished she had long legs like Linda. What she had to say about shock and brain damage apparently made less of an impression.

When the NYS Office of Mental Health held a conference on research in 1988, Linda and I both attended. I remember taking her to the doorway where she could intercept then-Governor Mario Cuomo after his keynote speech and question/confront him about shock. I remember her at one of the demonstrations against shock, holding up her sign about the OMH Commissioner:

SURLES ON SHOCK:
”                               “

(Editor’s note: It was her way of saying that the OMH Commissioner had nothing to say about shock.)

***

Ron Thompson

I can’t remember when i first met her, but it must have been the late ’80s, as I came to know her mentor, Marilyn Rice, through Linda, for a few years. Marilyn Rice died of a heart attack in 1992, looking older than her 60-odd years as a result of stress from the ECT abuse, which cost her the mental skills she had as an economist working for the Federal Government, leading to the involuntary end to her career.

Two very different personalities, but I always admired the single-mindedness and focus of both. Marilyn was a gentler personality while Linda was always apt to be more in-your-face, but both were utterly sincere and deeply informed.

Always attractively dressed, Linda apparently had had no serious emotional problems, but consented to ECT in the context of No Informed Consent, which greatly added to the feeling she had been betrayed. (Conversely I was very lucky to not know of the existence of ECT during my worst period, lasting 13 months. If I had I would have demanded it immediately).

Linda never ever backed down from a confrontation with any of her ECT adversaries, especially Max Fink.

Linda was locked up psychiatrically against her will around 2010. I last time I tried to see her, about 10 years ago at Manhattan Psychiatric, she apparently refused to come down to meet with me.

I know that she was very upset that her book, Doctors of Deception: What They Don’t Want You to Know About Shock Treatment, had very low sales. I’ve read my copy and find it an excellent piece of work. A psychiatrist, Stefan Kruszewski, who was asked to review it, approached his task with great skepticism, but was agreeably surprised and wrote a glowing review.

A favorite and amusing memory I have of Linda, although my reaction could have been the opposite, was how she often needled me as having a “rich wife” (not so, but she had a good job) as reason for my not being as obsessed or intense as she was almost all the time. But I liked our intellectual and personal jousting and shall miss her, as I have this past decade.

Linda will also be fondly remembered by Laurel Gilbert, another survivor of ECT, who worked closely with her on a major 1985 ex-patient conference, one of the earliest and most important.

***

Jim Gottstein

Linda was an extraordinary person with an important legacy. I got to know her a bit as I went to various conferences in the 2000s and was so very impressed. Her book, Doctors of Deception: What They Don’t Want You to Know about Shock Treatment, is the authoritative work on electroshock. I know Linda was disappointed about its not having a bigger impact, but it is so important that she wrote it and that it exists. I think it has had a bigger impact than Linda realized and will continue to make an important contribution.

In 2011 and 2016, Linda and I collaborated on a couple of submissions to the Food and Drug Administration (FDA). She refused to take any credit for the first, but the second one is a joint submission by the Law Project for Psychiatric Rights (PsychRights) and the Committee for Truth in Psychiatry (CTIP), which she headed. They lay out the compelling scientific case against electroshock. “Collaboration” is a stretch because all of the substance is her work.

At a time when my financial situation was difficult and I went to New York City for the oral argument in my appeal of Eli Lilly’s obtaining a permanent injunction against me for further dissemination of the Zyprexa Papers, and the sky-high hotel rates were a problem for me, she let me stay at her apartment even though she was not going to be there. I owe a lot to Linda—as do we all. I am heartbroken Linda has left us.

***

Susan Rogers

Although I didn’t know Linda Andre well, I respected and admired her enormously: Despite the life-altering impact that she experienced from shock treatment, she fought valiantly for the rest of her life to ensure that people knew its dangers so that they had the opportunity for “truly informed consent.”

Linda’s great book—Doctors of Deception: What They Don’t Want You to Know About Shock Treatment (Rutgers University Press, 2009)—was called “brilliant analysis” and “a masterpiece of scientific writing” in a review by Stefan Kruszewski MD in the International Journal of Risk and Safety in Medicine. 

I remember when Linda and I set up an informational picket outside the Carter Center during their symposium about Mental Health: A Report of the Surgeon General (1999), because the report used the words “safe and effective” to describe shock. We didn’t stop anyone from entering the Center; we were just trying to educate people. But a Carter Center official asked us to stop.

I also attended a meeting that Joseph Rogers set up for Linda, along with Al Guida (then staffing the National Mental Health Association), to meet with Dr. Richard Nakamura, then a highly placed official at NIMH, about the Surgeon General’s Report. Al and I were just there to support Linda, who made the presentation to Dr. Nakamura. One thing stands out: After Linda had spoken for a while, including about the terrible impact that shock had had on her cognitive abilities, Dr. Nakamura said, “Well, you seem pretty smart to me.” And she immediately responded, “You should have known me before.”

I also worked with Linda on press releases—including to get the word out about the article by shock proponent Harold Sackeim, published in Neuropsychopharmacology in 2007, which concluded with the sentence: “[T]his study provides the first evidence in a large, prospective sample that adverse cognitive effects can persist for an extended period, and that they characterize routine treatment with ECT in community settings.” And I also arranged for her to speak to a group in Philadelphia to educate them about the dangers of shock.

On another note, I used to follow Linda’s blog, which she called “Grandma’s Gone Surfing,” in which she described her experiences learning to surf in the Rockaways. It seemed that she had found something to give her joy. But after a while she stopped writing the blog. And, by then, we had lost touch.

I was so sorry to learn that this amazing woman has left us. She will not be forgotten.

***

Will Hall

Linda was an outspoken hero and one of my most memorable Madness Radio guests:

https://www.madnessradio.net/madness-radio-electroshock…/

Some survivors have the “I don’t care what anybody thinks; this is the truth and I’m not shutting up” attitude: just what is needed to change the world. This was Linda’s uncompromising stance: she worked tirelessly to expose the fraud, corruption, and mass violent injury caused by electroshock / ECT / electroconvulsive therapy. She was right, and I hope the world will catch up with her one day. Just sad she won’t be here to see it.

https://shepherd.com/book/doctors-of-deception

http://www.narpa.org/bios/andre.linda

http://www.ect.org/ctip_about.shtml

https://en.wikipedia.org/wiki/Linda_Andre

https://lifeafterect.com/the-controversial-history-of…/

***

Rob Wipond

I tried at various times to get in touch with Linda over the years, just to tell her how much I loved her book. Unfortunately, I never did get to talk with her, but just a couple of months ago I included a mini-review of Doctors of Deception among my five favorite books about contemporary forced treatment.

https://shepherd.com/best-books/involuntary-commitment-and-psychiatric-treatment

***

Dorothy Dundas: I shall always be grateful to Linda for writing her amazing book, the bible to many of us who were lucky enough to survive the atrocities of ECT.”

***

NARPA

NARPA has published a remembrance of Linda Andre that includes links to articles about her life as an activist fighting ECT.

***

Peter Lehmann, Berlin Germany

As happy as I am to have met Linda at a conference in the USA many years ago, I am now saddened by her death so soon. This will spur me on not to let up in the fight against criminal electroshock and the shockers’ primitive lies about their cruel “benefits”. My condolences to Linda’s family and friends.

***

The post Remembrances of Linda Andre, Leader in the Fight Against ECT appeared first on Mad In America.

What the Thelen lawsuit alleged

Between May 2014 and July 2016, the plaintiff, Nebraska resident Jeffrey Thelen received approximately 95 ECT treatments for depression.

The machine used on Mr. Thelen was the Thymatron System IV, manufactured and distributed by Somatics, a company founded in the 1980s by Richard Abrams, M.D. and Conrad Swartz, M.D. Electrika, the co-defendant, is a manufacturer and exclusive supplier of Thymatron ECT devices for Somatics.

ECT did not improve Mr. Thelen’s depression, according to the complaint. Instead, he suffered “severe and permanent short term and long-term memory loss and cognitive deficits, a constant state of panic and depression due to his inability to focus, concentrate, and remember or learn new things.” In addition, he reports “significant impairment in his day to day functioning, he is often confused, is unable to finish sentences, and has difficulty caring for himself on a daily basis.”

Prior to receiving ECT, Mr. Thelen had worked in the tree-trimming and removal industry. After the treatments, he lost all memory of the skills and abilities required for his trade. He is now permanently disabled and unable to work. The lawsuit sought compensatory damages for lost wages, pain and suffering, health care costs, and more.

Similar to previous ECT trials, questions of informed consent were central. The complaint states: “Had Mr. Thelen been warned concerning the risk of brain injury or permanent neurocognitive decline, he would not have consented to ECT treatment.”

A dangerous loophole

Failure to warn cases such as Thelen require the plaintiff’s attorneys being able to prove that manufacturers were aware of the risks and dangers of their medical devices, and withheld that information intentionally from the public. In the complaint, Somatics was said to have “knowingly and intentionally concealed adverse event information” that was “material to medical providers and patients.”

Besides concealing the risks of ECT, Somatics was alleged to have overstated the safety and efficacy of its device, making “intentional affirmative misrepresentations to the public, patients, the medical community, including Plaintiff’s medical providers, that its Thymatron ECT Device was ‘the safest and most effective treatment for severe depression.’”

There is no evidence to back up Somatics’ above assertion, yet the device maker continues to be protected by a dangerous regulatory loophole.

ECT devices, including the Thymatron machine used on Mr. Thelen, have never received FDA approval. Instead, they have been “grandfathered in,” a provision that allows Class III devices that happened to be on the market before the Medical Device Amendment was enacted in 1976, to remain so until FDA finalizes rulemaking requiring a premarket approval application, or PMA, from device manufacturers.

FDA approval of PMAs is based on clinical trials proving safety and effectiveness of Class III devices presenting a risk of illness or injury. The two existing ECT device makers, Somatics and MECTA, have yet to be required to do so. Dr. Abrams, Somatics’ co-founder, said in a 2018 court deposition “We’re not in the business of doing studies of traumatic brain injury. We sell Thymatrons.”

The Thelen case alleged that Somatics’ misrepresentations extended to claims that its device did not cause “brain injury, permanent memory loss; or any long-term or persistent effects on intellectual abilities or memories, counter to a well-established evidence base.”

In 2018, two years after Mr. Thelen’s ECT treatment was concluded, Somatics settled a similar “failure to warn” case, Riera v. Somatics, LLC. At this point, the company revised its website for the first time to acknowledge potential risks: “ECT may result in anterograde or retrograde amnesia. Such post-treatment amnesia typically dissipates over time; however, incomplete recovery is possible. In rare cases, patients may experience permanent memory loss or permanent brain damage.”

“Such warnings and indeed even more conclusive warnings concerning permanent memory loss and brain injury should have been given by Defendants to medical professionals and the public decades ago when such risks were first reported and were known to Defendants,” the Thelen complaint reads.

The verdict and next steps

On June 8, the jury found that Somatics placed its device on the market “without adequate instructions or warnings to the physician who prescribed the ECT treatment” to Mr. Thelen. However, the jury disagreed that the lack of warning was a “proximate cause of damage” to him. No damages were awarded.

The paradoxical verdict can be attributed to the Court’s failure to admit key evidence about the laws of electromagnetism and how the human brain is impacted by electricity at the cellular level.

ECT survivor and activist Sarah Price Hancock, who has been closely tracking the case, told Mad in America, “I was just baffled when the Court threw out the laws of electromagnetism. It’s akin to denying the existence of the law of gravity in a case about a bridge collapse.”

She noted that one expert who testified, Dr. Bennet Omalu, was cut off every time he mentioned that seizures cause brain damage. He was not permitted to speak to the effects of electrical injury that he has seen under a microscope.

In a statement released shortly after the verdict, lead trial lawyer Bijan Esfandiari said, “While disappointed about the outcome, Jeffrey is grateful to have had his day in court to expose the dangers of ECT in the hopes of preventing others from experiencing similar injury caused by ECT. We intend to appeal on numerous evidentiary issues and will continue to fight for Jeffrey and others harmed by Somatics’ failure to warn.”

Mr. Thelen’s attorneys filed a motion for a retrial on July 7, according to documents accessed through DocketBird. The basis for the retrial motion appears to be the Court’s refusal to admit vital scientific evidence regarding the effects of ECT on brain cells.

While more developments are soon to come, Price Hancock views the Thelen verdict as a partial win. “The jury agreed that the manufacturer ‘failed to warn.’ That’s huge. It’s a step in the right direction.”

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

Editor’s Note, August 18, 2023: The Wisner Baum law firm has made a daily trial summary, trial transcripts, and depositions available here.

The post In the Courts, a Partial Win for Informed Consent and ECT Justice appeared first on Mad In America.

Among the array of treatments Judd documented in River of Time was electroconvulsive therapy (ECT). She was referred for ECT by Dr. Jerrold Rosenbaum, then-head of Massachusetts General’s Department of Psychiatry, after she hadn’t responded to antidepressants, which qualified her as having “treatment-resistant depression.” She writes that Rosenbaum, with whom she had a friendship, promised her that modern ECT was safe and effective, nothing like the film One Flew Over the Cuckoo’s Nest. This narrative, the one most frequently presented to the media and the public, seemed to overcome the singer’s initial reticence and fears of memory loss.

Unlike Fisher, Judd did not report a positive experience. After 24 sessions, she expressed doubts that the procedure was helping her, and quit. “About a month after the ECT treatments ended,” she wrote, “I could tell that I was slowly falling back into thoughts of suicide.”

Judd was one of thousands of Americans referred to ECT each year. While it was a male character receiving shock in One Flew Over the Cuckoo’s Nest, available data reveal a stark gender divide, both in the US and wherever else it’s administered. Today’s recipients are approximately two-thirds women, disproportionately between the ages of 60 and 65, and mostly white.

Proponents defend the statistics by pointing out that these demographics are more likely to seek and access care, and to receive a diagnosis of depression. University of East London psychology professor and ECT researcher John Read tells Mad in America, “Well, if that’s true, why are women more depressed? And how does electricity address those issues?”

New campaigns demand accountability

In the 1970s, protests against ECT gained some public attention. But since then, even while patient accounts have regularly told of harm done, their voices have been drowned out by the pro-ECT lobby.

ECT survivors and their allies have been calling for a ban for decades, even briefly achieving one in Berkeley, California in 1982. Their protests have featured a simple demand: “Stop shocking our mothers and grandmothers.” And today, 40 years later, the survivor literature is filled with accounts of permanent brain damage, erasure of identity-defining memories, loss of professional skills and livelihoods, and unrecognizable, ruined lives. Yet these voices have been largely silenced in the US.

Survivors like Disa Sacks, a New York physician who lost the ability to practice medicine after receiving ECT, are rarely heard in the public domain. She tells Mad in America of her experience undergoing the procedure in Florida: “It was done in your street clothes. Everyone’s lined up on these dirty gurneys, and then they wheel you into the ‘treatment room.’ They stick a piece of paper in your face with five emojis. ‘How do you feel today?’ You’re supposed to circle which emoji represents how you feel. That’s the extent of the assessment. And then they flip the switch on you.”

“I cannot believe my life,” she says. “I just can’t believe what’s happened to me. I can’t feel anything except anger.”

“Anytime anyone gets upset or angry about what ECT has done to them, the psychiatrists and those listening blame it on their ‘mental illness,’” California-based survivor and activist Sarah Price Hancock tells Mad in America.

Critical researchers have been similarly smeared in the public sphere, accused of spreading “dangerous misinformation.”

“If you look at it from the psychiatrist’s benevolent perspective—that they are helping people for whom no other alternatives exist, then the psychiatrist will always win,” Hancock says. “Humans in general have this very high regard for physicians. That’s part and parcel for our culture.”

These longstanding cultural factors are among the many reasons that in 2019 Hancock began considering another strategy. “My father is an accountant and taught me, ‘If it’s not measured, it’s not valued.’ I needed to objectively look at numbers, to quantify the scope of the problem at every level, because data is the only thing that’s going to get people’s attention. So I started the #AuditECT campaign.”

She knew it would be a Herculean task to audit her own country with its patchwork, privatized healthcare system, writing in Mad in America in 2020: “It requires funding to submit a FOIA request to Medicare, State Medicaids, and all Private Insurances in every state.” The FDA had rejected her requests for data, as well as subsequent appeals. “Since we can’t get this information easily in America, let’s focus on quantifying where we can get data,” she says.

Hancock exchanged ideas with a leading group of survivors, researchers and campaigners in the UK: Drs. John Read, Lucy Johnstone, Sue Cunliffe, and Peter Kinderman. The group’s cause had just been bolstered by a 2019 study previously covered by Mad in America, authored by Read, Dr. Laura Marshall (Open University) and leading placebo expert Dr. Irving Kirsch (Harvard University).

The study, published in Ethical Human Psychology and Psychiatry, was the first to rate the quality of all existing randomized double-blind research on ECT. The researchers found only eleven placebo-controlled studies; the most recent dated to 1985. None came close to meeting modern methodological standards. “This body of research is of the lowest quality of any I have seen in my 40-year career,” Read said in a press release.

Especially troubling were the findings regarding women and elders, the primary recipients. For both populations, there was almost no evidence that ECT beat placebo in the short term, and no evidence of long-term benefit. The implications are especially grave, given that women and older people are also particularly susceptible to memory loss caused by the procedure.

The researchers also found no evidence that ECT was beneficial to the three groups of people it is primarily recommended for: severely depressed people, suicidal people, and those said to have “treatment-resistant” depression. Given the well-documented risks of harm, the study’s authors called for an immediate suspension of its use until randomized, double-blind placebo-controlled studies could be conducted using today’s scientific standards.

Progress across the pond

The UK campaign gained further momentum in July 2020, when the Cumberlege inquiry made headlines, exposing massive systemic failures in the regulation of drugs and medical devices—particularly those prescribed to women, such as pelvic mesh. The inquiry’s findings felt familiar to those who’d been trying to expose ECT’s harms, and the campaigners saw an opportunity.

A group of 40 recipients, caregivers, professionals, and researchers launched a renewed phase of the campaign. Cunliffe and Johnstone explained the rationale: “Many years of disquiet and protest about ECT has failed to bring about change, but the recent Cumberlege review…suggests a mechanism for by-passing denial and vested interests, bringing unacceptable practice to light, and offering acknowledgement and redress to victims.” The group wrote to their MPs and all relevant government officials asking for an independent review of ECT.

Over the last three years, their work has achieved some results. A number of MPs signed on to a petition. Mind, the UK’s equivalent of the National Alliance on Mental Illness, endorsed the review. Media coverage followed, with a spotlight on ECT’s use on women; Read had filed a Freedom of Information request and discovered that in 2019, two-thirds of the UK’s recipients were women, and 36% were involuntary patients.

And last month, lawmakers on both sides of the aisle went on record in the media supporting a review. MP Nadia Whittome told The Independent, “The fact that it is being used at times on women in a vulnerable position without their consent is particularly alarming.”

Former shadow secretary of state for women and equalities MP Marsha de Cordova said she found the disproportionate use on women “deeply worrying” and was concerned that patients are not being “appropriately warned about the side effects.”

Read expresses cautious optimism about the progress so far: “It might take another year or two, but we might well get a proper independent government inquiry. I think we’re building towards that.”

Cunliffe, speaking about the campaign on the Medical Error Interviews podcast, explained: “If nothing else, at least if patients are being consented properly and they’re monitored for brain damage—if that’s all we achieve, that is a big achievement.”

“The hope is,” she continued, “that if we can really bring changes over in the UK, that it will then enable people from America, Canada, and other countries…to hold their governments accountable.”

“Why don’t we know those answers here?”

Naomi Judd, appearing on Good Morning America in 2016, said, “What I’ve been through is extreme. My final diagnosis was severe depression—treatment-resistant, because they tried me on every single thing they had in their arsenal.”

Her experiences may not have been as unusual as she imagined. At least one-third of Americans who access care for a depression diagnosis are classified as “treatment-resistant,” and some unknown percentage of them are being referred to ECT. Hancock reports that the number of US facilities offering the procedure jumped by 34% following the FDA’s 2018 decision to reclassify it as a Class II device for “treatment-resistance” in adults and children over age 13.

But in the US, there’s no clear national picture of how many people are undergoing the procedure each year, let alone the number of involuntary recipients. “They know those answers in England. Why don’t we know those answers here?” Hancock asks. “We can say how many appendectomies are given at every hospital. We can say the same for any treatment using general anesthesia. But we can’t track ECT?”

For her part, Sacks, the physician who was greatly harmed by the procedure, agrees with the UK campaigners’ goals, and hopes their results can bolster similar efforts in her country. “ECT needs to be banned—until or unless they do real, decent studies that show that it’s both safe and effective. Which they won’t be able to do, because it’s neither.”

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Campaign Against ECT Gains Traction in UK appeared first on Mad In America.

Jess Stohlmann-Rainey, activist, consultant, and former crisis line director, acknowledged surface-level changes, such as the removal of the term “active rescue,” a euphemism for sending emergency services to a caller’s home without their consent.

“But in a functional way, it is not that different,” Stohlmann-Rainey, who created a guide to understanding and using 988, tells Mad in America. “The assumption that force is needed remains embedded in this document.”

The 988 Lifeline replaced the preexisting National Suicide Prevention Lifeline (NSPL) across the United States in July of 2022.

988 Lifeline’s continued reliance on involuntary emergency interventions, often involving law enforcement, has long been a target of abolitionists, survivors, and critical suicidologists fighting to eliminate coercion in suicide prevention and crisis response, creating networks of collective care and liberation instead, calling for public health-based alternatives to force.

988 Lifeline’s FAQ reports that “a small percentage” of calls will result in 911 dispatch when imminent risk is assessed as present. But as call volume rises, this will translate into increasing thousands of nonconsensual interventions.

Ysabel Garcia, founder of Estoy Aquí LLC and a psychiatric survivor, notes that 988 Lifeline’s mission doesn’t square with all-too-often deadly outcomes from involving law enforcement. Half of people killed by police are disabled, with disabled Black, Indigenous, and People of Color in greatest danger. Queer, trans, and undocumented disabled people are also more likely to be harmed or killed in police encounters.

Undocumented trans people are less likely to seek help in a crisis—usually out of fear that law enforcement will be sent without consent. Follow @SafeHotlines to stay up to date on our efforts to keep hotline users safe. #SafeHotlines #SuicideAwareness #SuicidePreventionMonth pic.twitter.com/Qnf6b7fFSU

— Trans Lifeline (@TransLifeline) September 29, 2022

“It doesn’t make sense to send a police officer and EMTs to a person who holds all these marginalized identities,” Garcia says. “It’s literally a death threat. Their so-called intention of ‘saving lives’ doesn’t match the impact of their policies.”

Stohlmann-Rainey points out that while 988 Lifeline has tried to further emphasize the risks of policing in this version of its policy, there are caveats. “You can put all the barriers [to coercion] in place, in theory. But as soon as you have a scared call taker who is able to call the police, they can just do it at any time, and there aren’t really any consequences. Lifeline doesn’t even necessarily know when that happens.”

As someone who has herself supervised a crisis line, Stohlmann-Rainey has firsthand knowledge of the numerous barriers to collaboration and consent, noting that current risk assessment strategies don’t account for provider fear and overwhelm.

“The amount of crisis out there is always going to outpace the number of workers we have,” she says. “You’re doing this, and maybe you can see there’s 40 calls in the queue. If this feels really high risk, and you think you’re going to end up calling 911 anyway, maybe you’ll call it sooner so that you can pick up the phone for another one of these 40 something people [waiting on hold]. And that’s not an okay decision to have to make, right? It’s the decision that people are making every day doing this work.”

Included in the appendices of the revised policy is a template for a mandatory supervisory review of calls resulting in the dispatch of non-consensual emergency services, to be held within 72 hours. Its introduction reads: “Dispatching emergency services, particularly when involuntary, is a significant undertaking and one that necessitates reflection when the inherent stress of the presenting crisis has resolved.”

The new policy also requires 988 Lifeline call centers to “investigate alternatives to emergency service interventions within the community,” and to establish collaborative agreements or memoranda of understanding with less restrictive options when possible. In the absence of such options, call centers are encouraged to advocate for them.

Emily Krebs, suicidologist and assistant professor of health and culture at Fordham University, tells Mad in America, “Yes, putting more attention on alternatives to emergency service interventions is a good thing. But as long as involuntary hospitalization is on the table, suicide hotlines remain unsafe.”

Garcia, who identifies as a suicidal person, observes that America’s crisis care system is largely driven by paternalism and the abuse of power. “When I look at anything that is a dominant crisis response, the question is always, ‘How much power can I take away from you?’”

“The entire thing is paternalism 101,” she adds. “This idea of ‘I know better than you do about your own experience, and I am entitled to act on you.’ Like the person in crisis is some sort of object—or a child, even.”

“We know involuntary intervention isn’t working,” Krebs says, citing the numerous negative outcomes that can result from forced hospitalization, including an increase in suicide risk. “As scary as it might be, suicide hotlines have to try something else.”

Krebs points to Trans Lifeline, which has created a Crisis Callers Bill of Rights, BlackLine, and Samaritans NYC as examples of crisis lines that have eliminated all nonconsensual intervention. “While this approach may indeed result in some callers’ deaths, I believe that it will allow many more people to call without fear—and will ultimately save more lives while honoring people’s autonomy.”

Callers to crisis hotlines should be able to speak about suicidality without fear of experiencing more trauma due to forced hospitalization. Show your support for survivor-led solutions by signing onto the Bill of Rights https://t.co/XwJ0t1jDzc#SuicidePreventionMonth pic.twitter.com/c0kAN7Y6ii

— Trans Lifeline (@TransLifeline) September 30, 2022

“Suicide hotlines must recenter consent in their policies and practices,” says Krebs. “While others in suicide research and prevention certainly believe otherwise, I argue that suicidal people’s agency is important and their desires around medical care—or lack thereof—should be honored.”

“You can’t coerce someone into wanting to be alive. Force just doesn’t work. People must be invited to live while supporters (healthcare professionals, social workers, loved ones) make their lives and world more habitable.”

Garcia questions how “voluntary” even so-called consensual emergency interventions are, especially when the threat of an involuntary response looms ever-present on the crisis line. “Coercion and violence are not always right in your face,” she says. There’s the gaslighting, the manipulation—that’s also part of the violence and coercion in the psychiatric system and crisis care system.”

“I’m not excited about any ‘change’ here,” Garcia says of 988 Lifeline’s revised policy document. “In order for us to have actual change, this entire thing will have to be erased. It will have to be dismantled. Reform is not enough. Abolition is what’s needed.”

No Cops in Crisis Care, No Cops Anywhere! We want to fight against police involvement in mental healthcare, such as the newly introduced SIM model, whilst recognising that current mental health services also perform a policing role – they just wear a different uniform pic.twitter.com/2Qr3ToQYNy

— Campaign for Psych Abolition (@CPAbolition) August 28, 2021

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

Banner image created using photos from Roger Victorino and Osman Rana on Unsplash.

The post “You Can’t Coerce Someone into Wanting to Be Alive”: The Carceral Heart of the 988 Lifeline appeared first on Mad In America.

The administration’s agenda provides for the “involuntary removal” and hospitalization of persons who appear to be both “suffering from mental illness” and “in danger due to inability to meet their basic needs.” While affirming that the administration would try to get individuals to accept help voluntarily, Mayor Adams stated: “But we will not abandon them if those efforts cannot overcome the person’s unawareness of their own illness. In short, we are confirming that a person’s ‘inability to meet basic needs,’ to the extent that it poses a risk of harm, is part of the standard for mental health interventions.”

The announcement was immediately condemned by the disability community, homeless advocacy groups, and human rights organizations, and has resulted in a tsunami of coverage. But the voices of unhoused people have been less frequently heard in the public debate and reaction to the Adams administration proposal.

Lisa Ortega, formerly unhoused organizer with Take Back the Bronx, told Mad in America that involuntary removals of unhoused people were already happening in New York City. “A lot of people get put away involuntarily,” she said. “They get medicated immediately. And they can’t even fight back because they get medicated.”

She voiced fears that her Black and Brown unhoused neighbors would be further targeted under the new guidance. “If a homeless person just puts up their arm and says, ‘No, don’t,’ that’s considered ‘resistance,’” she said. “‘They’re ‘decompensating.’ They were ‘violent.’ They were ‘aggressive.’ This is more of a green light to just take people in.”

Ortega pointed the finger at the Adams administration and past administrations for producing conditions of poverty and houselessness in the city. “They’re the ones that are making people sick in the streets, putting them in the streets to begin with,” she said.

A Half-Century of Tug of War

According to Mayor Adams, this is the first time that a mayoral administration has issued official guidance on the “basic needs” standard. But efforts to loosen existing civil rights protections have a 50-year history, going back to the earliest years of the deinstitutionalization movement in the 1970s.

In 1971, schoolteacher Alberta Lessard was facing lifetime civil commitment to a Milwaukee public psychiatric facility and was being forcibly medicated when she called Milwaukee Legal Aid Services for help. Lessard became the plaintiff in a class-action lawsuit, launched on behalf of all persons involuntarily committed in the state of Wisconsin. The case went to a U.S. District Court, which ruled in 1972 that Wisconsin’s civil commitment laws violated the Constitution, and this for a time became the guiding decision.

Alberta Lessard being ejected from a Milwaukee courtroom, February 1980. Photo credit: George Holloshek“Historically, persons alleged to be mentally ill have had the constitutional status of children,” wrote civil rights attorney Thomas K. Zander in 1976. Prior to the Lessard decision, mental health law operated under the doctrine of parens patriae, which views the state as a benevolent force intervening in the welfare of those deemed unable to help themselves.

Lessard held that people facing involuntary commitment to psychiatric facilities should be given the same due process rights as those facing the criminal legal system. The law enacted the strongest-ever standard for civil commitment: that of imminent danger to self or others, shifting the burden to the State to prove beyond a reasonable doubt that an individual’s deprivation of liberty was warranted. States across the country followed suit, adopting similar legal reforms.

The Lessard decision faced near-immediate pushback. In 1973, Wisconsin psychiatrist Darold Treffert began sharing anecdotes about people found not committable under the new laws, who went on to die by suicide, anorexia, and other causes. Treffert coined the term “dying with their rights on,” which has become an ongoing rallying cry among coalitions of medical authorities, family advocates, and policymakers across the country seeking to correct the pendulum swing towards civil rights. To this day, these coalitions continue to use Treffert’s strategy of invoking rare and horrific tragedies involving people designated as “severely mentally ill” as rationale for loosening inpatient and outpatient commitment standards.

Lessard did not specifically address the right to refuse medication, otherwise known as the right to informed consent. Zander, an adjunct professor of law at Marquette University, told Mad in America via email that there are no U.S. Supreme Court precedents that specifically recognize the right of civilly committed persons to refuse medication.

He explained that a handful of cases, including Washington v. Harper (1990), Riggins v. Nevada (1992), and Sell v. United States (2003), established that substantive due process limits the State’s authority to forcibly medicate incarcerated people and criminal defendants found incompetent to stand trial. He noted that in all due process matters, “the devil is in the details,” stating that “in applying that general principle to civilly committed individuals, state courts and federal district courts have gone in different directions as to how far they have limited the State’s authority to forcibly medicate.”

Despite the Lessard reforms, thousands of disabled people continued to be involuntarily warehoused in the 1970s and 1980s. The Americans with Disabilities Act of 1990 ushered in a new, anti-discrimination approach. In the mid-1990s, Lois Curtis and Elaine Wilson, both confined against their will in Georgia state institutions, became the plaintiffs in Olmstead v. L.C. The 1999 U.S. Supreme Court decision held that institutional confinement constituted a violation of Title II of the ADA, and established the unqualified right of disabled people to receive supports in the community. A wave of Olmstead cases that followed ushered in a second phase of deinstitutionalization.

The Rise of AOT

At the same time that Olmstead was being litigated, the high-profile 1999 New York City subway murder of Kendra Webdale by Andrew Goldstein set off a renewed backlash to the civil rights agenda, in the form of involuntary outpatient commitment. That same year, members of Ms. Webdale’s family, along with the newly-formed NAMI spinoff group, the Treatment Advocacy Center (TAC), successfully advocated for “Kendra’s Law,” the first involuntary outpatient commitment law in the United States. The name was euphemistically changed to “assisted outpatient treatment (AOT).” Despite the softened re-branding, Kendra’s Law reinvigorated the ongoing policy push to reframe “untreated severe mental illness” as a public safety issue.

The public safety approach has been gaining steady ground. In the 24 years since the TAC was founded by E. Fuller Torrey, AOT laws have been passed in 47 states and the District of Columbia, and the program has received federal funding.

AOT has been widely criticized not only for its infringement of rights, but its lack of efficacy. The 2001 Bellevue Study compared the outcomes of people compelled to accept outpatient treatment vs. those offered services voluntarily, and found no difference. A 2017 Cochrane Library review of AOT research affirmed the initial Bellevue findings, finding that compulsory outpatient treatment has “no clear difference in service use, social functioning or quality of life compared with voluntary care or brief supervised discharge.”

Almost from the start, the AOT program has been heavily disparaged for its glaring racial disparities. A 2005 New York Lawyers for the Public Interest (NYLPI) report examining Kendra’s Law implementation found that Black people were five times more likely, and Hispanic individuals were two and a half times more likely, to be subjected to a court order than their white counterparts. “We submit it is immoral and irresponsible to continue a system of compulsion that is so biased,” the report concluded.

New York’s Office of Mental Hygiene statistics, among the clearest AOT demographics data available to the public, illustrate that statewide disparities have persisted to this day. In New York City itself, the disparities only increase. The city’s population is 24% Black and 29% Hispanic, but 44% of those on AOT orders are Black people, and 32% are Hispanic people.

“The AOT system compounds upon the already existing systems of oppression against Black and Hispanic New Yorkers. In this regard, the AOT system has become, perhaps unwittingly, more akin to the criminal legal system—an inherently racist system that primarily deprives people of color of their rights and liberties,” wrote Victoria Rodríguez-Roldán in a 2022 examination of AOT’s racial disparities. These disparities are by no means limited to New York, but are present in other cities. A March 2019 evaluation of San Francisco’s AOT program found that Black people represent nearly a quarter of those placed under AOT orders, while comprising just 5% of the city’s population.

Five of the eleven points in the Adams’ Administration’s legislative agenda propose policy fixes to remove “barriers to AOT.” The heavy emphasis on strengthening AOT in the Mayor’s plan is unsurprising, considering that in July of this year the administration hired Brian Stettin as senior advisor for severe mental illness. Stettin is the former policy director of the Treatment Advocacy Center; as Assistant New York State Attorney General, he was also a key player in the original conception and drafting of Kendra’s Law.

Involuntary Treatment Legislation Spreads Coast to Coast

Mayor Adams’ announcement is only the latest in a string of efforts to remove unhoused people from urban areas and to compel them to accept psychiatric treatment. “It’s an emerging era of re-institutionalization,” Vesper Moore, mad justice activist with the Kiva Center, told Mad in America.

In September, California governor Gavin Newsom signed the Community Assistance, Recovery and Empowerment (CARE) Act into law, which enacts a regime of CARE Courts. The legislation targets individuals diagnosed with psychotic disorders, ordering them to comply with a CARE plan for up to 24 months, with threat of being forced into a conservatorship if they do not.

The CARE Act was roundly condemned by people with lived experience, as well as civil rights, disability rights, and human rights organizations for its emphasis on coercion. In a statement, the California Association of Mental Health Peer Run Organizations (CAMHPRO) said: “This plan is not a new approach and a paradigm shift. In fact, it resorts to the same old default of the behavioral health system—forced treatment. A court order is forced treatment. Also, force is force, whether in a hospital setting or located in the community, in a home.”

Similar in tone and tenor to the CARE Act, there have also been a number of bills introduced into state legislatures that criminalize unhoused people for simply existing in public, in the form of so-called “camping bans,” and compel them to accept court-ordered treatment.

Many of these bills are based on model legislation called the “Reducing Street Homelessness Act,” created by the Cicero Institute, a conservative think tank founded by tech entrepreneur Joe Lonsdale. Lonsdale was mentored by Silicon Valley billionaire Peter Thiel, a major supporter of Donald Trump, along with other Republican candidates including JD Vance (R-Ohio) and Blake Masters (R-Arizona). Along with Thiel, Lonsdale is a co-founder of Palantir, a secretive CIA-funded software company whose technology has been used for migrant surveillance and predictive policing. While Silicon Valley has long projected a liberal image, a powerful cadre of entrepreneurs like Lonsdale and Thiel are focused on remaking a “new American right.”

In the past year, legislation modeled on the Cicero bill has gained traction, passing in Texas, Missouri, and Tennessee, whose bill is the first to make public camping a felony. Similar bills introduced in Wisconsin, Georgia, Arizona, and Oklahoma failed in recent legislative sessions. And liberal cities like Portland, Los Angeles, and San Francisco are also strengthening camping bans and criminalization.

Cicero’s model legislation seeks to expand existing criminalization efforts, making it illegal to camp on public land in any area other than designated parking areas or camping sites, punishable by up to one month in jail and/or a $5,000 fine. Those residing in designated camping facilities would be required to participate in mental health and/or drug treatment, including invasive drug testing. Failure to comply with treatment, including a positive drug screen, would result in “removal” from such facilities. What would happen to individuals after such removal is unspecified.

The Cicero Institute's founder has direct financial interests in pushing for the criminalization of homelessness. This increased criminalization could benefit his software company as it might lead to increased contracts with states to surveil and track unhoused populations.4/

— National Homelessness Law Center (@homeless_law) August 11, 2022

The bill also provides for “mental health supervision” petitions. Like the Adams proposal, these petitions hinge on the most expansive interpretation of involuntary treatment statutes, going even beyond the inability to care for oneself to having “a mental state that will deteriorate to a dangerous level without medical intervention.”

Cicero’s model bill also includes an AOT provision. After an individual’s 72-hour hold expires, providers are encouraged to place people under AOT orders “when appropriate.” Those failing to comply with their court-ordered treatment plan are also subject to up to one month in jail and/or a $5,000 fine. (While Cicero Institute and TAC staff have had policy conversations, there is no formal relationship between the two groups, Judge Glock, Cicero’s senior director of policy and research, told Mad in America.)

The Cicero bill shifts funding from permanent supportive housing efforts to temporary encampments. Joining other right-leaning think tanks such as the Manhattan Institute and the Heritage Foundation, the Cicero Institute takes aim at Housing First programs, declaring them a “failure” and instead pushing for a mandated “treatment first” approach that employs a “carrot and stick.”

When we actually have enough affordable housing for everyone and there’s still massive amounts of homelessness, we can say “housing first has failed”

We’re not even one one-millionth of the way to that.

— DivestSPD (@DivestSPD) October 24, 2022

Advocates Respond: “It’s Just a Way to Remove Them From Sight”

When asked to respond to the claims of conservatives that the Housing First model has failed, and that a “treatment first” approach is preferable, Ortega told Mad in America, “Tell all those right wing motherf–ckers, ‘Give us your housing and then we’ll learn from you how to navigate that without a home…Give us your home and then we’ll watch you and we’ll note it. It’ll be a case study, how you maneuver that.”

Kim Hopper, a medical anthropologist at Columbia University who has for four decades studied policies impacting unhoused people, repudiated assertions that Housing First has been a failure, noting that there simply isn’t enough permanent supportive housing to meet the demand. “The forces generating homelessness don’t come from ‘failed’ Housing First programs,” he told Mad in America. “They come from all sorts of structural factors that are making it impossible for people to afford the rent. Or they are being discharged from a variety of facilities with really poor follow-up plans that eventually land them on the street or in shelters. And once they’re in the shelters, they discover, ‘This is not a place I want to live.’”

According to Shams DaBaron aka “da homeless hero,” who is providing guidance to the Adams administration while not agreeing with all of its policies, partial blame for the current situation lies with Callahan v. Carey (1979), which affirmed the legal right to shelter in New York City. “[Callahan] gives us our shelter-industrial complex, and it also gives us our problems,” he told Mad in America. “Because instead of building supportive housing, instead of putting money towards psychiatric stabilization beds, they just put it towards shelters.”

“This is rooted in systemic racism. And this is by design. This is codified,” DaBaron added.

Advocates calling for “housing not handcuffs” warn that the strengthening of anti-camping bans and criminalization of unhoused individuals will inevitably increase deadly police encounters and exacerbate existing racial disparities, given that 40% of unhoused people in America are Black, despite comprising only 17% of the total population.

Mayor Adams seeking to expand the use of force against members of society-NYC will begin incarcerating ppl in mental health facilities-stopping & frisking people and incarcerating for a presumed mental health issue #WhatIsGoingOn? https://t.co/nsTI8G6WoH

— JMacForFamilies (@JMacForFamilies) December 6, 2022

Theo Henderson, writer, unhoused organizer and host of the We the Unhoused podcast, told Mad in America that unhoused Angelenos received the Adams Administration announcement with alarm. “The same thing that they’re doing over in New York, they’re trying to implement here,” he said. “They already have dispatched and sent out people to go after unhoused people who are maybe in various stages of breaks from reality.”

Henderson, who has been organizing for the repeal of 41.18, the Los Angeles statute that criminalizes poverty and houselessness, clarified that a person does not even need to “appear mentally ill” to be threatened by police and/or removed in Los Angeles. “So let’s imagine that you’re unhoused and you’re waiting at the bus stop. Simple. Right? You’re not bothering anybody. You’re not hurting anybody. But someone gets it in their head to say, ‘Hey, this person is mentally ill.’”

In contrast to claims that such initiatives represent a compassionate response to poverty and houselessness, Henderson called anti-camping ordinances like 41.18 “soft fascism.” “Death and sanctioned violence should not be the solution for getting people to get help, because that’s not helping, that’s control and that’s violence.”

“I’ve heard the now ejected council member Nuri Martinez say: ‘We need to offer a carrot and a stick.’ These policies are not a damn stick, but a stone to stone people into accepting dangerous and incompatible services.”

“You’re basically putting your foot on the neck while they’re down, that’s your solution,” he added. “That’s what you feel is going to make sure people magically get off of substances, magically make people ‘sane,’ acceptable by society. When I say quiet fascism, this is what I mean.”

Henderson is clear that despite claims of empathy and care, these laws are about removing visible signs of homelessness and poverty from the streets. “They are definitely working at trying to penalize and imprison people that they claim have mental health issues, or even if they don’t. It’s just a way to remove them from sight. And that’s what’s so alarming. People don’t understand this is not about people not wanting to get help. It’s about them trying to target unhoused people because the Olympics are coming here.”

Column: New York will treat more mentally ill people against their will. Should California follow? https://t.co/sBi3APyj45

— Los Angeles Times (@latimes) December 2, 2022

Questionable Legality

During a press conference following his November 29 announcement, Mayor Adams said: “This is not a new law. We are going to properly define and carry out the existing law and then partner with our partners in Albany to see what we need to correct.”

Ruth Lowenkron, director of the Disability Justice program at NYLPI, told Mad in America that the Adams proposal is “very confusing.”

“He’s saying, ‘All I’m doing is what the law allows,’” Lowenkron said. “But then he suggests that requiring a showing of dangerousness is a myth. And that’s not what the law says. The law does say, of course, that you have to have a showing of dangerousness. So it’s a little hard to pick out what he’s saying…What certainly appears to be happening is a loosening of standards and an assumption about who can and can’t take care of their basic needs.”

Lowenkron said it was still too early to determine what legal challenges the Adams Administration might face. She referenced a currently pending class-action lawsuit, Baerga v. City of New York, which accuses the city of violating individuals’ rights by sending cops to respond to people in mental health crises.

According to NYLPI’s website, “The plaintiffs include people who were arrested simply for having a mental health diagnosis—or even just being perceived as having a mental health diagnosis—and who were not a harm to themselves or others, but were nevertheless forcibly strapped to gurneys or otherwise restrained and taken against their will to a hospital.” In the context of that lawsuit, NYLPI has requested further information from the Adams Administration, Lowenkron said.

Statement: #NYLPI calls on @NYCMayor to reject expansion of coercive measures and instead release a comprehensive plan for individuals with mental illnesses.

Read the full statement: https://t.co/NNhIeI9D3D

— NYLPI (@NYLPI) November 29, 2022

First They Came for…

The pandemic only served to deepen and magnify existing inequities and injustices in the U.S. As America’s already frayed social safety net continues to unravel with no end in sight, and society becomes increasingly polarized on almost every social issue, civil liberties have come increasingly under attack. This trend can be seen not only when it comes to mental health and houselessness, but in a spate of laws and rulings restricting the rights and movements of a variety of marginalized and oppressed groups.

A glaring example is the repeal of Roe earlier this year, which made abortion illegal in 11 states and overwhelmingly impacts pregnant people of color. But this trend can also be seen in a number of recent laws sharply restricting or outlawing the rights of transgender youth to pursue and receive gender-affirming care. What all of these laws have in common is an anti-democratic othering of people who are often already on the margins of society.

In case you didn't know, the document that describes the new policy effective 11/28/2022 in NYC is entitled "Mental Health Involuntary Removals." And if that doesn't frighten everybody, it really ought to. First they came for the people with mental health conditions…

— Kathy Flaherty (@ConnConnection) December 2, 2022

Henderson said that a major part of the battle is for the public’s imagination. “It’s housed people that voted these people in for these draconian policies. We need to have that conversation and that understanding. Why is it that you have to have a villain?”

“Society does not want to make the adjustments that are necessary,” he added. “People lack the emotional intelligence, the impetus to speak out against these injustices and say, ‘Hey, this is not going to work. This is harmful to people. We’re harming people already. Let us look for solutions that are with them at the table. And not only that, let’s stop demonizing them.’”

****

Cover photo by Vesper Moore.

Clarification: As first published, the article stated that the U.S. Supreme Court ruled that Washington’s civil commitment laws violated the Constitution; however, the Supreme Court’s review of this case was limited to technical questions involving federal civil procedure, and not the merits of the case.

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post And Now They Are Coming for the Unhoused: The Long Push to Expand Involuntary Treatment in America appeared first on Mad In America.

Naomi Pinson, a feminist community organizer who was twice institutionalized as a teen, has been widely credited with helping to seed Mass ACT. Pinson was alarmed when she read an April 16 letter to state officials penned by the Disability Law Center (DLC) and the Mental Health Legal Advisors’ Committee (MHLAC) regarding conditions within Lemuel Shattuck Hospital in Jamaica Plain.

“DLC and MHLAC have received information indicating that the health, safety, and rights of patients at LSH are at great risk,” the letter read. “Those reports include information regarding the rapid spread of COVID-19 infection through the Metro Boston Mental Health Units (MBMHUs) and indefinite suspension on access to fresh air and privileges for the patients in those units beginning two weeks ago.”

“Shattuck is a pit,” Pinson told Mad in America via email. “Its denizens are drawn from the poorest and most marginalized of all. They also have a large Department of Corrections unit, and a large number of forensics patients, mostly people of color, as I understand it.”

Pinson, 72, a resident of Framingham, told Mad in America that she got the idea for a caravan the day after she read the letter, when she witnessed an hundreds-strong car protest organized by the Roxbury-based Families for Justice as Healing. The group is holding a series of ongoing car protests to raise awareness about conditions within the MCI Framingham, a women’s prison and one of the correctional facilities being hardest hit by the virus in the state of Massachusetts.

Recalling her own experience as an institutionalized young person, Pinson was moved to organize in solidarity with those detained in her state’s psychiatric facilities. “When you’re in these places, you want people to know that you’re alive, to appreciate the situation you’re in. To say, ‘I’m rooting for you.’”

The very next day, Pinson reached out to members of her community and, referring to the Shattuck letter and the MCI Framingham protest, asked them for help in taking action. The message generated the spark that ultimately led to the formation of Mass ACT.

While the idea for the Shattuck car protest came from Pinson, one of the group’s elder members, the planning and logistics were aided by the group’s youngest organizer, Kayla Neumeyer. Neumeyer, 27, who also works with the youth-led Jewish direct action groups If Not Now and Never Again Action, had just helped to organize a series of car protests and had energy to lend, with practical advice to give.

I spoke with Neumeyer on the phone about the deep intersectional analysis that undergirds Mass ACT’s organizing. “It’s racist, classist, and ableist conditions that have led us to this point,” she emphasized. She added that she had heard something recently at a conference that struck her: “‘The people closest to the pain are the ones with the best solutions.’ That’s an ethos I hold in all my organizing work.”

On May 17, less than a month after Pinson first reached out to her fellow community members, 17 cars bearing signs reading slogans such as “Freedom Now” and “Free Our People” made three giant circuits around the Shattuck Hospital grounds. Some members of the group got out of their cars and continued the protest at a safe distance from one another outside the facility. Organizers shot footage of the action, which meets viewers with a continuous cacophony of horns blaring—alternately staccato, bellowing, and screeching out their rage and resistance.

“It’s Like Dracula’s House” to Us

When I asked Mass ACT organizers on a recent Zoom meeting why they chose Shattuck as the site of their car protest, they listed a multitude of reasons. Organizer Sera Davidow mentioned that the 255-bed teaching hospital was the site of the first resident death from COVID-19 on April 21.

Shattuck Hospital and Tewksbury State Hospital, the two largest state-run psychiatric facilities in Massachusetts, have both been heavily impacted by COVID-19. Nearly a month after a United States Army Reserve unit came to Tewksbury to assist with mitigation, thirteen residents have died, two of them on the hospital grounds, according to a May 19 Patch report.

Thomas Brown, one of the primary car protest organizers, likened Shattuck to “Dracula’s house” in the original movie version of the Bram Stoker novel, a comparison which drew laughter from his comrades on Zoom. “Shattuck Hospital is that kind of Gothic building for us. It’s a symbol in this state,” Brown said.

“It was already supposed to close because it’s run down and it’s not fit to have people in it,” said organizer Martha Barbone. The hospital, erected in 1966, is slated to be shut down and relocated in 2021, according to a government website.

“For me, it’s because it’s [located] in a community of color that is being hit very, very hard,” added Ruthie Poole, who has a shared history of activism with Pinson, having met her on a picket line. A slew of emerging data have indicated that the overwhelmingly disproportionate brunt of the virus has been borne by Black, Brown, immigrant, and undocumented communities, and Massachusetts is no exception. However, according to a report last month in The Boston Globe, the full scope of the impact remains unclear, as the state does not release racial and ethnic data.

Pinson, who created and directed a peer educator training program that ran biweekly at Shattuck for six years, said that one of her biggest worries about the May 17 action was that those living within the walls would be unaware of what was happening outside that day. On an organizers’ call following the protest, she asked the group, “Did the people inside know we were there? Why we were there?”

While the hospital had set up gendarmes in advance to try to limit the protesters’ access to the grounds, the message appears to have reached its intended recipients. “The patients were hearing us. They were yelling out at us. Someone else flashed a phone at us,” answered Poole.

“That was really, really great,” Poole said.

The protest, which was organized over the span of three days, attracted local media interest. Coverage included a moving photo essay in the Boston Herald as well a segment that aired on local TV news station Fox 25.

“We’re Not Asking for Too Much”

The car protest was just one aspect of a multipronged and ongoing awareness-raising and resistance campaign spearheaded by Mass ACT, which describes itself as a “human rights advocacy organization comprised of individuals who are receiving or who have received psychiatric services and their allies.”

“It’s not like we’re asking for too much,” said Mass ACT organizer Jason Wright, who recently interviewed Davidow and Brown about the campaign on his podcast, The Oddball Show. “We’re just asking for fair treatment in psychiatric hospitals during COVID-19.”

Organizers told of several drivers of their urgent efforts. One of the primary areas of concern revolved around the isolation and distancing policies that may be necessary for the public’s health but are particularly worrisome for individuals’ human rights. These measures include the cessation of all outside visitation, including lack of access to outside peer support workers and other non-hospital affiliated advocates who are in a position to monitor conditions.

A related issue further fueling the isolation is a lack of digital infrastructure, often exacerbated by the age and size of the buildings, which makes it difficult for residents to utilize video conferencing and other technologies that would allow them to interact with the outside world. Additionally, public health measures limit access to translation and interpretation services. “There are people who are in some of these facilities who don’t read or speak English, who have even less access to people in their lives who speak their own language, and have less access to information about COVID-19 that is accessible to them,” Davidow said.

The isolation measures land particularly hard on persons already historically vulnerable to abuse and neglect within the walls of aging and authoritarian institutions.

“When you have people held against their will, who have been marginalized often for much of their lives, held somewhere without the public being able to find out what’s going on—that’s a problem of its own,” Davidow told The Oddball Show. “There are lots of people in these hospitals who have a lot to say, but without support from the outside, the risk to them [in speaking out] is really, really high.”

The community’s concerns are further compounded by an absence of clear and forthcoming information from the state’s Department of Mental Health. Transparency is by no means the group’s only ask, Davidow told Wright, but it is the primary one. “If there’s no transparency, it’s impossible to figure out what to do, because nobody knows what’s happening.” She added, “We believe [state officials] have a responsibility to tell us what is happening, what measures they are taking to protect people. And instead, the little bit that we’re able to find out is that people are getting sick and they are dying.”

Brown is concerned about the long-term effects of what he describes as “the core features of traumatic experience:” hopelessness, helplessness, and terror. “People are being traumatized by a lack of ethical response and responsible protocols,” he said on The Oddball Show. “The people who are in the units right now, and in group homes and nursing homes, they’re going to come out of this with terror that’s going to last for a long time.”

Davidow related on The Oddball Show podcast that in her role as director of the Western Massachusetts Recovery Learning Community she had requested information from the Department of Mental Health on COVID-19 transmission rates in a local long-term psychiatric unit on April 20.

“I got the answer on May 12,” Davidow said, adding that it took a Herculean effort, going all the way up the chain to the Executive Office of Health and Human Services, to obtain that information. She found out that a full ninety percent of those hospitalized in the facility she inquired about had tested positive for COVID-19. “It’s only by luck that none of them have died. It’s not because anyone has done anything right,” Davidow said.

Davidow is not alone in her frustration at the dearth of basic COVID case data made available to the public. Other advocates across the country have shared similar complaints. In response, earlier this month the Autistic Self-Advocacy Network launched a COVID-19 case tracker to aid those seeking to understand the true impact of the virus in congregate facilities.

As Mass ACT was in the process of coalescing as a group, Davidow had simultaneously been mobilizing, along with other local advocates, to pen a letter to Department of Mental Health and Department of Public Health officials, again demanding transparency on the COVID-19 response. The group met by conference call with state mental health officials earlier this month to discuss the letter, and found the response to be “vague” and lacking in substance.

For example, advocates asked what the state was doing to move discharge planning along more quickly for those who are able to shelter safely in the community. What they heard disturbed them. As Brown told The Oddball Show, the number of people currently being released from state hospitals is “about the same” as would be discharged without a pandemic.

“The Department of Mental Health is risk aversive to the point of phobia,” Pinson told Mad in America in an email. “In the face of the virus, Mass ACT is urging speedy discharge, but it’s much easier for DMH to just let people languish indefinitely.”

Pinson spent almost four years as a human rights officer at Tewksbury State Hospital. “I watched ‘risk committees’ and ‘discharge committees’ drag discharge out not just months, but at times, years,” she said. “Patients are only ‘invited’ to attend when being grilled, or at the point at which decisions had already been made for them.”

Davidow pointed out that there have been efforts to get people out of jails and prisons on “compassionate release,” as per a state Supreme Judicial Court ruling last month on reducing incarceration due to the virus. As of last week, WBUR reported that 1000 people had been released from Massachusetts jails and prisons, a number advocates say is insufficient.

But she feels that people incarcerated in psychiatric hospitals and other congregate settings have been largely ignored.

On the podcast, Davidow referred to the obliviousness of cable television refrains about “staying home, together” and the like: “There’s all these communities that can’t do that, because they’re living without a home, or they’re in a psychiatric facility, or in a nursing care facility. They’re not having that choice. And the world isn’t seeing us any more than they did under more ‘normal’ conditions. In fact, I think even less are we being seen.”

Mass ACT insists that its demands are fair and reasonable, given the dire circumstances. “We are not asking that people be forced to be out on their own if they feel like they want to stay in a hospital. And we’re not saying, ‘Just open the doors and let everyone out, without any support.’” Davidow and others had requested that the state use emergency dollars to re-evaluate residents and provide them with housing, hotel vouchers, and other types of support that would allow them to avoid a risky congregate setting.

In a follow-up communication shared with Mad in America, Davidow cited a dizzying array of unresolved questions and concerns beyond discharge planning and vouchers, ranging from a lack of data on COVID infection rates, to little information on what forms of mental health treatment (if any) were being provided, to reports of residents being deprived of fresh air, to a lack of access to technology, to staffing levels, among other subjects. As of this writing, she has not received a response from the state.

The letter to DMH would form the basis for Mass ACT’s Change.org petition, addressed to Massachusetts Governor Charlie Baker and state legislators. “We join with those held in immigration detention facilities and prisons in demanding equitable treatment and humane conditions,” the petition reads. “Mass ACT is demanding immediate action by the legislature and the Baker administration to address the conditions in these psychiatric settings that put residents’ lives at risk.”

While other petitions, such as one created by New Jersey state hospital workers last month, have demanded that lawmakers address conditions within psychiatric facilities during the pandemic, Mass ACT’s is one of only two known petitions to be authored and launched by former residents of such facilities. The Mass ACT petition amassed 250 signatures within its first 24 hours, and over 500 within the first week.

https://www.instagram.com/p/B_nHWedJGrb/

Plaintiffs Wanted

In addition to the letter, petition, and car caravan protest, Mass ACT is actively working with advocates at the Mental Health Legal Advisors Committee, the Disability Law Center, and other state and local groups to locate potential plaintiffs to launch a class-action lawsuit against the state for its poor management of conditions inside its facilities. Such lawsuits have been launched in other states, including Connecticut and the District of Columbia.

Earlier this week, we did the one thing within our power as lawyers to do: we filed a case in federal court. Complaint linked here: https://t.co/vTLvqDdXvO Getting to lead the team at @CTLegalRights is such a privilege. Grateful every day. https://t.co/9Lh9pJnunW

— Kathy Flaherty (@ConnConnection) May 2, 2020

In 75-minute hearing in @WashLaw4CR and ACLU-DC case against @stelizabethsdc today, judge expresses continued concern about death rate, notes they are “dying at an extraordinary rate." Ruling expected by midnight tonight when the court’s prior emergency order expires.

— ACLU of the District of Columbia (@ACLU_DC) May 22, 2020

The MHLAC created an online survey designed to gather data and information on what is occurring within these facilities. The survey reads, “Share the injustice you or someone you know has experienced so that we can go to the legislature, government agencies, and courts with powerful evidence of these harms. Or give us an example of a setting that shines so that we can convince governments that following prevention measures and creating a humane environment in psychiatric settings can be done.”

At a recent organizing meeting, the group brainstormed at length as to how to get the surveys to people inside who cannot access the Internet, or who may need assistance in filling out a survey. Their extensive calculations were all designed to figure out how to do so without getting anyone into trouble.

Both Davidow and Brown repeatedly emphasized on The Oddball Show that in order for real change to take place, those working and living within the walls of these facilities will have to assume some level of risk—no easy feat in the authoritarian and disempowering setting of the psychiatric hospital, where retaliation against staff and residents occurred with disturbing regularity even before the pandemic. Brown recalled a period of time when he tried to make change from within an agency he worked for: “Once I started being vocal, I knew I was risking my employment every single day. It’s a horrible feeling.”

“People need to take those risks to let people know [what’s happening]. If these advocacy law centers don’t have real stories from people, they can’t do anything. You can’t bring a lawsuit on hearsay,” he added.

“It’s beyond the abstract idea of human rights. It’s about life and death here,” Davidow told The Oddball Show. “If we’re not willing to take risks, what we are saying is we are willing to risk silence around the lives and deaths of people in our community who are locked away and have no power right now.”

Davidow added that legal advocates are also willing to take confidential reports, which may not result in a lawsuit, but could help to fill in some of the massive information gaps.

Calling All Whistleblowers

One of the discussions at the post-car protest Mass ACT organizers’ meeting centered on whether or how change can be made from inside oppressive systems, which speaks to the vital role of the whistle-blower within these settings. Some organizers came down unequivocally on the need to push for change from without. “When I worked inpatient, I hated everything they did,” said Barbone. “I had this idea, ‘I’m on the inside, I can [make] change from the inside.’ And that was wrong.” She added, “I’m not there anymore.”

Brown agreed with Barbone about the ultimate futility of systems change from within. “You’ve got to go so much farther than that.”

Others were more circumspect. “I don’t think it’s one or the other,” said Pinson. “I think you can work on both sides to create change,” to which she added, “Me, Marx, and Lenin think that,” provoking a round of laughter from the group.

Brown gently pushed back. “I tried it for 13 years. I’m somebody who works really hard at anything that I do, and I could barely make change. What I got until the very end, was people punishing me for the change that I was trying to bring.”

Poole, who now works in the setting Brown once did, assured him that his efforts had not been completely in vain. “You made changes, Thomas. You made good changes.”

Davidow also came down on the side of pushing from within and without, while recognizing the limitations of the former. “I think it’s next to impossible to make the kind of long-term, big changes we’re trying to make from the inside. I think a lot of people get pretty tortured for trying. And I think we should still be trying. I don’t know what else to do. Otherwise, we’re just deserting [people].” Barbone concurred. “Everyone who’s stuck on the inside is stuck on the inside. So if some of us aren’t there, what do they have?”

Many of the group have significant experience as peer supporters, educators, and advocates. Despite the obstacles, they remain hopeful that their fellow peer workers on the inside can help aid in the resistance. Their focus moving forward will continue to be on encouraging hospital residents, workers, and others with insider knowledge to speak out on the state’s mismanagement of COVID response.

Pinson has an idea as to how to potentially make it easier for people to come forward in Massachusetts. “We need to rewrite the human rights handbook and strengthen whistleblower protections,” she said. Brown agreed, noting that existing policies protecting whistleblowers were not being followed, and that there were few agencies where people in peer roles felt safe to speak up. “I hope one of the functions of Mass ACT will be to help protect change agents,” he told Mad in America.

In Part 2 of Mad in America’s series on the mismanagement of COVID-19 response in U.S. psychiatric facilities, Lori Sevigny spoke about her experience on a 72-hour hold at a psychiatric ward in a large city hospital in the Northeast last month. Sevigny was the only person who was willing to be named in that piece, as others harbored understandable concerns about retaliation at work and privacy of loved ones.

As she promised one of the nurses on the unit where she was hospitalized, Sevigny threw herself immediately into activism, connecting with Pinson and helping to launch Mass ACT soon after her release. She designed the group’s logo, started its social media pages, released the Change.org petition, and became a primary organizer, along with Brown, of the Shattuck car protest.

Sevigny and I reconnected on May 19, and she talked about how generative it has been to work with Mass ACT, with its combined ethos of peer support and activism. When I asked her what she wanted people still on the inside to know, she said, “Just because things don’t happen overnight, we’re not going to stop. I can promise them that.”

Reflecting on her harrowing hospital stay last month, Sevigny said, “Sometimes in life we have to go through experiences to make things better for people who can’t speak up, for people who don’t have a voice. And in that, I feel a little bit honored that I was [in the hospital] that week. I just hope that I can help make things better.”

Brown, for his part, has had it with being in the business of being polite, he told Mad in America. Recalling his own personal and professional history, he said, “You’re always encouraged to be nice. Be sweet. Set a ‘feel-good’ tone. But you can’t talk about the horrors [of COVID] without being furious. Or at least a little edgy.”

Organizers at Mass ACT hope that their multi-pronged efforts to hold the state accountable will embolden their peers in other states to lead similar actions. “All we need is courage,” Brown said, “And to be an example. To show that it’s safe to lift our voices.”

Mass ACT is fixing their sights on Tewksbury next. On May 21, they will mobilize again, snaking around the grounds of the old state hospital with car horns blaring, signs displayed, sounding out loudly and insistently for justice in a terror-filled time.

Spread the word… Join Mass Act for a protest at Tewksbury State Hospital on 5/31, 12:30pm to 3:30pm. 16 people (15 held in the psychiatric facility, and one staff person) have died of #COVID19 at Tewksbury State Hospital to date.. How many need to die before action is taken? pic.twitter.com/PbfjORbTn4

— Wildflower Alliance (@WldflwrAlliance) May 23, 2020

***

MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post “Free Our People!” Ex-Psychiatric Patients Demand COVID-19 Accountability in State-Run Facilities appeared first on Mad In America.

These ideas seem especially relevant in the contested domain of mental health care, where marginalized communities often fight to be heard above the pronouncements of psychiatric, medical, and legal authorities. Recently, the battle for narrative justice in mental health has centered around Bedlam, a widely-acclaimed documentary distributed by PBS’ Independent Lens that opened last month to packed film festival screenings, fanfare, and awards. The film is named after Bethlem Royal Hospital in London, England, the first asylum ever built.

Bedlam’s director, writer, and co-producer Kenneth Paul Rosenberg, who wrote a companion book of the same name, told Democracy Now! last year that he decided to become a psychiatrist at age 14 after watching his parents take his sister out of a mental hospital against medical advice. “All I knew was that to my parents, the psychiatrist was the enemy, and I was ready and willing to enlist in his army,” Rosenberg wrote in Bedlam, the book.

Rosenberg’s camera lens follows the life trajectories of several people and families who have experienced crisis, incarceration, institutionalization, and homelessness in Los Angeles, as well as the beleaguered psychiatrists treating them. While the crises depicted in the film are not in dispute, its underlying message has been heavily influenced by the Treatment Advocacy Center (TAC), an organization representing a movement of family advocates, psychiatrists, and criminal justice professionals that has long pushed for the expansion of involuntary treatment of people diagnosed with “serious mental illnesses.”

The film has also stirred protests from a broad coalition of survivor-led, civil rights, and disability rights groups over sins of omission: Their voices are missing from this narrative. Last week, more than seventy organizations signed an Open Letter to PBS, demanding that the publicly-funded entity affirm the right of people who have experienced oppression to control and share their own narratives and thus reclaim their power.

The Power to Frame the Narrative

The film follows a conventional deinstitutionalization narrative that lays the blame for the current mental health care crisis on the emptying of state hospitals in the 1960s and 1970s. Early on, audiences are shown a montage meant to provide context: a series of images of tent cities and humans in distress that emphasize the horrors of incarceration, a barely-functioning healthcare system, and the housing crisis. Set to mournful music, the film also presents images of asylums past, demolished by deinstitutionalization’s tragic wrecking ball. If the visual storytelling does not provide sufficient definition of the problem, then the official press kit does: “In the wake of decades of deinstitutionalization in which half a million psychiatric hospital beds have been lost, our jails and prisons have become America’s largest mental institutions.”

Kathy Flaherty, director of the Connecticut Legal Rights Project (CLRP), told Mad in America, “The film lays out a completely valid argument—that our systems are broken and most communities have abandoned people experiencing crisis. But then it presents us with a false dilemma, positing that there are only two options: the way it is now, and institutionalization. Exposing the audience to the horrors of the former pushes them to believe the latter is better.”

If the vanished asylum is framed as the historic root of the problem, then its reconstruction is implied as the modern-day solution. Yet state hospitals have been and continue to be congregate sites of abuse, neglect, and violence. It is said that the violent lobotomy of Rosemary Kennedy, President John F. Kennedy’s sister, may have partially influenced his decision to champion the Community Mental Health Act of 1963. And a growing number of organizations are currently fighting the mismanagement of COVID-19 that has led to the deaths of people incarcerated in public and private psychiatric facilities.

Last week, Flaherty’s organization launched a Federal class-action lawsuit to compel the state of Connecticut to mitigate the spread of COVID-19 and prevent deaths in public psychiatric hospitals. And one journalist’s preliminary research found that “roughly double” the number of people were dying from the virus in state hospitals than in federal prisons.

Bedlam is only one recent example of a master narrative that is deployed often by Treatment Advocacy Center spokespersons to potent political effect. It is a narrative that moves and mobilizes both the public and policymakers alike. It crosses political divides, appealing to both Democrats and Republicans, and has been featured on media outlets ranging from the far left-leaning program Democracy Now! to conservative publications such as the National Review online. Critics of this narrative remain largely unheard in the press.

The film itself does not spell out solutions to the crisis that it depicts with painful and unrelenting accuracy. But the filmmaker and his advisors at the Treatment Advocacy Center have a clear set of policy proposals in mind. Bedlam was made in close collaboration with the Treatment Advocacy Center; in its 2018 anniversary report, “Twenty Years of Eliminating Barriers to Treatment,” the organization boasted that it had been working with the Bedlam team for “quite a while,” adding that the film “draws heavily from the work of Dr. E. Fuller Torrey.”

To fix our nation's mental illness treatment system, we must first understand how we got here. #BedlamFilmPBS takes viewers into the heart of America's #mentalhealth crisis. Stream it now on @IndependentLens. https://t.co/bYuOJ8ZsG7

— Treatment Advocacy Center (@TreatmentAdvCtr) April 20, 2020

Since its founding in 1998 by Torrey, a psychiatrist and author, the Treatment Advocacy Center has worked on the local, state, and national levels to promote legislation authorizing forced inpatient and outpatient psychiatric treatment and to erode the privacy rights of people designated as having serious mental illnesses. Torrey and affiliated spokespersons, promoting such laws on major media across the political spectrum, have perpetuated the notion that the unmedicated “seriously mentally ill” are inherently dangerous and violent, a claim refuted by the research. These intertwined media and legislative advocacy efforts have driven the public’s and policymakers’ support for coercive laws and social-control type interventions.

A Transparent Policy Agenda

While filmmaker Rosenberg repeatedly promises audiences that he has no interest in returning to the asylum era, he has also publicly stated his support for repeal of what is called the Institutions of Mental Disease (IMD) exclusion, a law enacted in 1965 at the start of the Medicaid program to discourage states from their historic over-reliance on institutional care. Speaking last year to Democracy Now!, Rosenberg said: “This was developed in the Johnson era, and probably, again, for good reasons. They wanted to disincentivize big institutions. They wanted to incentivize community mental health. And they didn’t want to warehouse people in big hospitals. But it doesn’t make sense in 2019, does it?”

Rosenberg is also a vocal proponent of “therapeutic jurisprudence” or the Black Robe Effect, describing a range of policies that utilize the legal system to compel people to comply with treatment, framed as the humane alternative to incarceration and homelessness. In an op-ed, Rosenberg wrote: “Mental health courts can help divert people with psychiatric disorders who have committed a crime from jail to treatment.”

The psychiatrist filmmaker is also a fan of a controversial program called assisted outpatient treatment, (AOT) a euphemism for involuntary outpatient commitment, usually involving a forced medication component. As he told Truthdig:

“Many people I know have family members who live on the streets who are seriously mentally ill. And it’s very, very hard to challenge that, very, very hard to get them help. And it’s a complicated question, but there now are some procedures to get people help. There’s something called assisted outpatient treatment–very controversial, but it uses what we call therapeutic jurisprudence. Having a judge who knows about these things say to the person, look, either you go to a hospital, or you get treatment.”

On Democracy Now!, Rosenberg was asked about Todd, an unhoused HIV-positive man who was repeatedly criminalized for nonviolent drug offenses during the course of the film. “His story is painfully typical of people who end up cycled in and out of jail. They don’t get any kind of jail-assisted or judge-assisted treatment, which is extremely powerful, something called assisted outpatient treatment, which means that you don’t even have to end up in jail. And there is a process in place, on the books, in which people could get treatment, or family members could help their loved ones get treatment.”

While Todd just so happens to be white, AOT’s critics point to data showing that the “process” tends to land disproportionately on people of color. According to a report by the Maryland Disability Law Center and On Our Own of Maryland, which reviewed the existing literature on AOT: “In North Carolina, two-thirds of persons subjected to a mandated treatment order in the study were African American, despite only representing approximately 22% of the total state population. The evaluation of the New York [Outpatient Civil Commitment] OCC program revealed that disparate rates based on race/ethnicity have plagued the program since its implementation in 1999.”

Bedlam on the Hill: Members of Congress Cosponsor the Narrative

The deinstitutionalization narrative has been deployed with great success on Capitol Hill over the past decade. On March 3, just prior to the pandemic upending life as Americans knew it, the news service ITVS, with support from the federally-funded Corporation for Public Broadcasting, presented a “sneak peek” screening of the documentary to a packed house on Capitol Hill. The film thus provides a look into how Congress, as it mulls over mental health legislation, is presented with a narrative that promotes “coercion” as a “caring” response to our current failure, while the voices of critics of that narrative go unheard.

The documentary was co-sponsored by several Democratic and Republican members of Congress, including Senator Chris Murphy (CT) and Senator Debbie Stabenow (MI), as well as Congressman Earl Blumenauer (OR), Congressman Buddy Carter (GA), and Congresswoman Eddie Bernice Johnson (TX).

John Snook, executive director of Treatment Advocacy Center and a panelist at the Capitol Hill screening, hinted at the organization’s long-standing efforts to lower existing standards for involuntary treatment from “danger to self or others” to the “need for treatment” standard of the past, which presumably could be pronounced by any medical doctor over an individual’s objection. Snook spoke enthusiastically on the inroads made thus far by his group.

“That’s where I think the conversation is really moving, that we’re de-stigmatizing mental illness and saying, ‘It doesn’t matter whether or not someone is dangerous to themselves or somebody else. Who cares about that as a requirement. Do they need medical care? Do we do that for strokes? Do we do that for heart attacks? Do we say, ‘Not really dangerous yet. So come back in a week.’ That’s ridiculous, and that’s where things are changing. I think that’s the opportunity that we’re seeing in this film and around the country.”

Rosenberg seemed to concur with Snook, saying at the Hill event, “I could see as a society moving away from protecting people’s civil liberties to protecting their mental health.”

Writing for Sundance, Rosenberg seemed to call for centering the voices of people with lived experience in reform efforts. “Include people with serious mental illness in our dialogue about treatment and social reform rather than shutting them out with an attitude of ‘They don’t know what’s good for them.’” But instead of inviting people in the film with firsthand experience of the mental health and criminal justice systems to join the panel, the panel’s organizers flew in two of the psychiatrists depicted in the film.

USC+LAC Medical Center chief of psychiatry Dr. Colin Dias, one of the doctors on the panel, opened his remarks by saying of Bedlam: “It gives us an opportunity and a platform to speak for the voiceless.” But while Todd, the unhoused man whose story was featured in Bedlam, is missing—a fact Rosenberg revealed at a recent online screening discussion—presumably other individuals featured in the film could have represented their own points of view on the panel, in person or via videoconferencing. The intentional erasure of the voices of those incarcerated in psychiatric and prison facilities and substitution with those of family members and medical authorities is a familiar pattern among purveyors of the deinstitutionalization narrative.

Scholars and Scientists Debunk the Narrative

Critics in the academy, civil and human rights advocates, and people with direct experiences of psychiatric care have long asserted that deinstitutionalization is the wrong scapegoat, that the causes of this crisis are complex and multifactorial, and that they cannot be separated from questions of race, class, and gender.

Many scholars, including epidemiologist Seth Prins, historian Anne Parsons, psychiatrist John Michael “Mickey” Nardo, as well as feminist and antiracist scholar Mab Segrest, have provided compelling takedowns of the deinstitutionalization narrative based on the data and the historical record. As Prins writes in the Journal of Community Mental Health: “Although there is broad consensus that people with serious mental illnesses [SMI] are overrepresented in correctional settings, there is less agreement about the policy trends that may have created this situation.”

Parsons, author of From Asylum to Prison: Deinstitutionalization and the Rise of Mass Incarceration After 1945, locates the incarceration of people with psychosocial disabilities within the “rapid growth of the criminal legal system itself…[due to a] broader shift in government,” which she identifies as “a war on crime and drugs and the increased policing and surveillance of African-American communities.” Parsons asserts that those incarcerated in state hospitals during the mid-twentieth century were mostly middle-aged white people, while “the newly incarcerated were disproportionately African-American men under the age of 40.”

To blame the current state of affairs on a single failed policy of President Kennedy’s is to gloss over the actions taken by all presidents since, especially President Ronald Reagan and his “trickle-down” economic policies. President Reagan’s policies are widely considered to be the primary drivers of political and cultural wars on drugs and crime, which led to the mass incarceration of Black and Brown people, described as the “New Jim Crow” by legal scholar and author Michelle Alexander.

Mickey Nardo, the late data-oriented psychiatrist who blogged on health policy matters, argued that what occurred was not deinstitutionalization but “transinstitutionalization,”  a term invoked to describe forms of carcerality and criminalization impacting people across streets, prisons, and psychiatric facilities. For Nardo, the analysis lacks a broader social justice context. He wrote that this deinstitutionalization narrative implies “an inevitability, an excuse for our indifference to the lot of the chronically mentally ill. It’s way too simplistic and leaves out huge swathes of related history.”

In her new book Administrations of Lunacy: Racism and the Haunting of American Psychiatry at Milledgeville Asylum, Mab Segrest notes that the history of deinstitutionalization has largely been told by white authors such as DJ Jaffe or Ron Powers, presenting a medicalized caregiver perspective. Segrest writes: “It is past time to join or challenge those accounts with the brilliant historians of slavery, racism, and gendered white supremacy.”

The Submersion of Race and Class Within a Medicalized Narrative

Survivors and advocates shared similar responses to the deinstitutionalization narrative represented by Bedlam with Mad in America. For Los Angeles-based mental health advocate Keris Jän Myrick, the narrative fails to make key connections. “There is no room for any exploration of the impacts of systematic institutional racism and inequities for communities of color, especially for Black men and interactions with police and/or force—other than a few statements from the narrator and family members,” Myrick said.

Myrick resists the “hospitals not jails” message implied in the deinstitutionalization narrative. “More locked facilities? That’s not about care, that’s about safety, control, and relief.” While acknowledging the fear that families feel if their loved ones are missing or potentially in danger, she said, “As a Black person, the word freedom and anything that impacts freedom has to be contextualized, understood, and supported. Locking someone up for ‘care’ is an oxymoron. Rather, I want to know: What more should we do to negate any ‘care’ that reduces someone’s freedom?”

Filmmaker Rosenberg talks publicly about how he accidentally connected with Black Lives Matter co-founder Patrisse Cullors after filming her brother Monte in the ER. Cullors is the co-author of When They Call You a Terrorist: A Black Lives Matter Memoir, which heartrendingly portrays her family’s struggle to protect Monte from criminalization and police violence. Her community’s successful organizing to shut down a planned “mental health jail” are portrayed in the film. Cullors does speak directly to the intergenerational impacts of racism and criminalization on Black families, telling Democracy Now!: “Monte should have never been incarcerated.”

If the presence of racial bias in criminal justice is emphasized within the deinstitutionalization narrative, then its existence in psychiatric practice and medical settings such as ERs is largely ignored. Myrick, who once held a high-level position at the Substance Abuse and Mental Health Administration (SAMHSA), said: “Sadly, the movie presents us with an African-American man who already has had horrible and traumatic incidents with police and incarceration. But the ER itself is like a jail with guards, police and iatrogenic approaches to controlling people.”

Rosenberg does acknowledge racial bias in psychiatry to a degree in his book, citing the research of William B. Lawson, chair of Psychiatry at Howard University. In the Clinical Handbook of Schizophrenia, Lawson writes: “Overdiagnosis of schizophrenia is common among African Americans, with affective disorders often misdiagnosed as schizophrenia, mainly due to a failure to get adequate information, clinician bias, and cultural factors.” Lawson goes on to say that “African Americans often receive excessive doses of medication” and “are more likely to receive first-generation rather than second-generation or atypical medications, higher doses of medication, and more depot medication.”

The chemical straitjacketing of minority communities occurs with alarming frequency, despite evidence that it can cause them excessive harm. According to Lawson, “Biological evidence, if anything, supports lower dosing for ethnic minorities” because of particular ways that they metabolize psychotropic agents. He writes that African Americans who receive “standard medication doses are more likely to have extrapyramidal side effects on antipsychotics and to discontinue treatment.”

At one point in the film, Monte is asked about and rattles off a list of the heavy-duty medications he is taking: “Seroquel, Klonopin, Lithium, and Zyprexa.” He is said to have “gone off his meds” at least once during the course of filming the documentary. But no one ever asks him why. The unspoken implication is that such med-resistant behavior is a feature of Monte’s psychotic illness, and therefore not worth exploring.

While the films spends significant time focused on Los Angeles’ housing crisis, its deinstitutionalization narrative remains largely silent when it comes to its racialized dimensions. These include the historic and ongoing role of housing discrimination, including the practice of redlining, which created segregated cities and prevented Black people from accessing mortgages in Los Angeles and other parts of the country and thus precluded them from building intergenerational wealth via the commodification of housing markets.

Rosenberg does give a cursory nod to the role of economic inequality in producing distress, telling Democracy Now!: “At times, of course, poverty becomes a part of this cycle. Poverty makes mental illness worse and may even cause mental illness, in some way.” But Peter Lynn, the longtime head of the Los Angeles Homeless Services Authority (LAHSA), told The New York Times: “There is a staggering overrepresentation of black people in homelessness, and that is not based on poverty,” but on “structural and institutional racism.”

And a 2018 report from LAHSA, the first of its kind to focus on Black people, stated: “Black people are more likely than white people to experience homelessness in the United States, including in Los Angeles County… The impact of institutional and structural racism in education, criminal justice, housing, employment, health care and access to opportunities cannot be denied: Homelessness is a by-product of racism in America.”

New Research! @LAHomeless recently released its "Report And Recommendations Of The Ad Hoc Committee On Black People Experiencing Homelessness" with data analysis and research support from our Race Equity Working Group. READ: https://t.co/hZvXbP5CWB pic.twitter.com/E7tgHzY7pM

— HPRI (@HPRI_LA) January 15, 2019

Beyond the deinstitutionalization narrative’s superficial treatment of race, scholars and advocates take issue with its reductionistic lens. “This business of mental health is so complex. Rarely do complex issues have simple solutions,” Myrick said. “The complexity is rooted in policies, government funding bureaucracies, and system and service fragmentation.”

Epidemiologist Seth Prins wrote similarly about the dangers of the reductionistic approach to policy and practice inherent in the deinstitutionalization narrative. “The failure to approach this issue with the nuance it requires may unwittingly imply expensive interventions that will benefit only a fraction of the population at issue.” Prins added, “For the majority of this group, the key to staying out of hospitals, jails, and prisons may be a place to live, a job or some income support, a meaningful relationship or social network, quality healthcare, or linkage to treatment instead of frequent arrest for substance use disorders—fundamental needs that can best be redressed in the community, not psychiatric or correctional institutions.”

And New York-based psychiatrist and professor Bradley Lewis shared with Mad in America that he was struck by the film’s omission of any reference to the recovery model, developed in the 1990s as a more holistic and collaborative approach than the Western biomedical model depicted onscreen. For Lewis, the recovery model, a coalition between providers and service users, has become “the heart of the American Association for Community Psychiatry, people who have dedicated their careers to helping people in the community, unhoused people, those who are least served.” He acknowledged that if community mental health systems have “failed,” as the deinstitutionalization narrative posits, it is because they have been underfunded and overwhelmed. “They didn’t fail because they didn’t use the medical model well enough.”

Ultimately, survivors and advocates wholly reject the romanticized “bring back the asylum” narrative. “There is no reason to repeat the past and think somehow we are going to get something different,” Myrick said. “We were promised during the closing of institutions that community mental health was the replacement. We have yet to achieve that promise. We are waiting. Many of us are working towards collecting on that promise.”

The Fight for Narrative Justice

Narrative justice, a framework that has emerged from narrative therapy and trauma work, refers to the “storytelling rights” of people who have survived injustice and oppression. Narrative justice approaches defend people’s rights to “name their own experiences, to define their own problems, and to honor how their skills, abilities, relationships, history and culture can contribute to reclaiming their lives from the effects of trauma.” And the framework centers around an ethical question: “When meeting with people whose problems are the result of human rights abuses and injustices, how can we ensure we do not separate healing from justice?”

The Dulwich Centre, an Australian-based narrative therapy organization, has even created a Charter of Story-Telling Rights, which include the right of survivors “to define their experiences and problems in their own words and terms” and “to be free from having problems caused by trauma and injustice located inside them, internally, as if there is some deficit in them. The person is not the problem, the problem is the problem.”

Sascha Altman DuBrul, organizer with the Institute for the Development of Human Arts (IDHA) represents a growing number of organizations based in the U.S. fighting for narrative justice, fixing their crosshairs on the narrative represented by Bedlam.

He told Mad in America: “It’s as if ‘mental illness’ lives in some kind of social and political vacuum, and just develops in the brain as some kind of chemical defect. This is a discredited story that unfortunately has a lot of money behind it,” referring to the economic and political influence of the pharmaceutical industry and the psychiatric profession’s guild interests.

DuBrul was first alerted to the documentary in January when his mother, Anita Altman, invited him to moderate a post-screening discussion last month as part of the Reelabilities Film Festival, which Altman founded. Prior to the official event, DuBrul held a private screening of Bedlam for members of the IDHA community, and reported that they were “horrified to see the way our people were portrayed.”

“As someone who spent a month being shot up with Haldol in a cell in the LA County Jail, this film feels personal,” DuBrul said. “I’m diagnosed with a serious mental illness but I don’t fit into their narrative.” Dubrul, who co-founded The Icarus Project in the early aughts, added: “I went on to find thousands of others like me and be a part of building a resistance movement. Unfortunately, we don’t have the same kind of resources to develop a PBS documentary.”

Following Bedlam’s premiere last month, IDHA members moved from outrage into action. Their Open Letter to PBS, which has since been signed by more than seventy civil rights, survivor-led, and disability organizations, shares a vision for a future “in which ex-patients, survivors, and currently and previously incarcerated individuals are not merely depicted in mental health narratives, but given the agency to tell their own stories.”

“As a trusted, publicly-funded institution, we call on PBS to reflect upon its responsibility to deliver quality content to the public representing a range of perspectives and uplifting diverse voices,” the signatories said.

BREAKING: @idha_nyc brings together 70+ #MentalHealth #Disability #SocialJustice orgs/advocates in an open letter to PBS in response to Bedlam documentary, calling to uplift the voices of ex-patients, survivors, those diagnosed with mental illness.

Read: https://t.co/QvYDcWhNtB

— Institute for the Development of Human Arts (@idha_nyc) May 6, 2020

IDHA, which runs a school for “Transformative Mental Health,” also has organized a two-hour online community discussion in response to Bedlam on May 11. DuBrul will moderate the event.

Speakers will include Akeem Browder, former New York City mayoral candidate and brother to Kalief Browder, who died by suicide after he was unjustly imprisoned and tortured on Rikers’ Island as a juvenile; Patricia Berne, co-founder, executive and artistic director of Sins Invalid, a people of color-led “disability justice-based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ / gender-variant artists as communities who have been historically marginalized;” Azza Altiraifi, an award-winning disabled Afro-Arab organizer working for radical inclusion and access, racial and disability justice, and collective liberation; and Felix Guzman, a poet who has experienced incarceration in both prison and in psych facilities and is a member of Voices of Community Activists and Leaders, New York. This writer will also be a panelist.

In February, DuBrul provided comments to Mad in America about Bedlam that foreshadowed the ways in which the coronavirus pandemic would serve to magnify preexisting vulnerabilities and inequalities in all of our institutions and within society, truths conveniently left on the cutting-room floor. “Often the best way to deceive is to tell part of the truth, and then to leave out the really critical details,” he said. “We are so vulnerable as a society right now, and this [documentary] just fits into a playbook of manipulation.”

“If we really wanted to address all the factors that cause ‘serious mental illness,’ we would have to seriously restructure the society we live in,” DuBrul added.

****

MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post Bedlam: Public Media, Power, and the Fight for Narrative Justice appeared first on Mad In America.

As reported in Part 1 of this series, since the start of the pandemic, much attention has rightfully been paid to the spread of the virus in jails, prisons, and immigrant detention centers, with advocates demanding that states take measures to thin the populations of correctional facilities immediately. But according to an April 16 statement by the Judge David L. Bazelon Center for Mental Health Law, psychiatric facilities have not received the same level of public scrutiny. “One challenge that needs to receive more attention is reducing the number of people confined in psychiatric facilities,” the statement said.

While the data remain incomplete, at least one journalist has found that the number of reported COVID-19 cases among those medically incarcerated in psychiatric facilities is “roughly double” that of those incarcerated in federal prisons.

When I started reporting, there were just a handful of COVID-19 cases in state psychiatric wards.

After a week of data collection (still incomplete) I found the case number was nearly 1500 – roughly double that reported in the federal prison system. https://t.co/zSH6mGb77Y

— Kit Ramgopal (@KitRamgopal) April 17, 2020

Towards the beginning of the pandemic, Mad in America put out a request on social media for firsthand accounts. Several individuals have since come forward to share their experiences of mismanaged COVID-19 responses at facilities ranging from a psychiatric inpatient unit in a public general hospital to two state-run psychiatric institutions to a posh, internationally-renowned private psychiatric hospital. All but one person asked that their names and the names of the hospitals not be shared publicly, both out of fear of losing their jobs and to protect the privacy of other individuals involved.

“Make This the Quickest Admission You’ve Ever Had”

Mad in America spoke to Lori Sevigny on April 18, the day after her 72-hour psychiatric hold ended. Sevigny went to the emergency room of a large city hospital in the Northeast on April 14. She was grieving and in extreme distress after a beloved community member passed away.

Sevigny told Mad in America that if the peer-run 24/7 alternative crisis center in her area had been able to remain open during the pandemic, she definitely would have gone there. Going to the ER felt like the only option, she said.

Sevigny, a former nurse, was told that a bed was available at the trauma unit of a nearby private psychiatric facility, and she initially had hopes of being admitted. “I’ve been there before, and that’s what I thought would best help me,” she said.

However, the transfer process was completely upended by COVID-19. Sevigny was told that due to the pandemic, she would have to be medically cleared before she could be transferred to the trauma unit. By the time the blood work, x-ray, and a COVID-19 test were completed, she had been in the ER for 24 hours.

On April 15, at the 24-hour mark, Sevigny demanded to see a psychiatrist in the ER. “I was first told I couldn’t see one unless I agreed to go to their unit. This was when I was still supposed to go to the private hospital,” Sevigny explained. She declined to see the psychiatrist, willing to take her chances for a bit longer.

Sevigny then learned that the bed she had been hoping for had already been filled at the trauma unit at the private hospital. Although she tested negative for COVID-19, she was told that she had been denied a bed there, and at one other private hospital, due to pre-existing health conditions which put her at high risk of complications from the novel coronavirus.

Eventually, Sevigny saw a psychiatrist in the ER. She tried to explain that she felt “a hundred percent safe” and that a clinician could vouch for her. She clarified that the overwhelming wave of grief that brought her to the ER had passed. “[It all] just hit me, and I’m very sorry I took up time here,” she remembered telling him.

The psychiatrist rudely cut her off. “The only words I want to come out of your mouth are one of two words: one word would be ‘voluntary,’ and the second would be ‘involuntary,'” he told her.

When she tried to object, the psychiatrist said, “You have three seconds to pick your word or I’m picking it for you.”

“So my feisty self said, ‘I have three words for you: Fuck you—voluntary,’” Sevigny said. “The nurse laughed. But he did not like that. And then I was like, ‘Oh dear God, let this not be my doctor on the unit.’”

While Sevigny was clearly not a danger to herself at the time, she reports that the psychiatrist told her that she was one of his highest-risk patients because of her “suicidal actions.” Her last suicide attempt was nearly a decade ago. “How is that a high risk?” she wondered.

As Sevigny was being “voluntarily” admitted, she remembered feeling like “something bad was going to happen.” She told the doctor and the clinician: “I’m going to die up there. They’re going to kill me.”

When Sevigny got to the psychiatric unit, her blood pressure was so critical that an attending physician was called to treat her. “In the ER they weren’t really monitoring my vitals because I was on a psychiatric hold,” she said. “I could have been helped in the ER more quickly if they checked my vitals. But I was a psychiatric patient.”

Prior to being transferred onto the unit, Sevigny had been complaining to the ER nurse about symptoms including blurred vision, tingling hands, and a “funny feeling” in her face.

“She kept giving me Ativan. I’m not even on Ativan.”

Sevigny understood what was up: “It was the ‘be quiet’ pill.”

Once Sevigny’s blood pressure had been stabilized, the psychiatric unit nurse gave her some advice. “She said, ‘Between you and me, make this the quickest admission you’ve ever had. You’ll see why. Use your advocacy, and use your insight, and use your nursing judgment.’”

Having passed the gauntlet of the ER, Sevigny would next have to figure out how to navigate her own crisis and get out of a psychiatric unit clearly unprepared to prevent or mitigate the spread of the virus.

But first, here are two firsthand accounts from hospital workers at state-run psychiatric facilities with harrowing stories of their own to tell.

Oregon State Hospital: The “Appearance” of Protection

A worker at Oregon State Hospital spoke to Mad in America about his experience during the second week in April. He said that one of the first things the hospital did when the governor declared a state of emergency in early March was to reclassify as essential many workers who had been deemed non-essential.

“It is comforting to have some sense of job security, especially as the economic impacts continue to reveal themselves,” the hospital worker said, although he was clear that the hospital reclassified the workers for the sole purpose of being able to demand that they come to work during the pandemic, or be fired.

Like employees at other large state hospitals, the OSH worker documented an atmosphere of ongoing confusion, suspicion, tension, and non-transparency. Given that the hospital is not far from initial hotspots that broke out just to the north in Washington state, workers began to express concerns about safety very early on.

“The initial messaging from our administration was ‘don’t panic, these kinds of things happen, we’ve got a handle on this, we’re watching this, you can trust us, just go about doing your jobs,’” he said. “Staff felt this to be at odds with other messaging coming out of Washington state, the CDC, and the WHO.”

The administration started to make incremental changes to their guidance to staff, but within a matter of days, employees were suddenly being informed of a set of far more intensive restrictions that would be strictly enforced. From being told simply to wash their hands, they were now being told to wash their hands when moving from place to place in the hospital. Workers were informed that if one of their supervisors or colleagues observed them touching their face, they would be told to stop.

Conversations began to “swell up” at the hospital, the worker said, with staff taking liberties and sending out all-campus emails criticizing what he characterized as the administration’s “piecemeal response, inconsistently applied,” in handling the crisis.

“The administration is now creating the appearance of putting some higher level of protection,” the hospital worker explained, “while ignoring how that’s being violated every day, hour to hour.” As an example, once the hospital started up admissions again, patients were to go to a specially-designated unit, where they would be quarantined for 14 days before being moved to other parts of the hospital.

The problem with this, the worker said, is that admissions are being done on a rolling basis. “Person A could be quarantined in the unit from May 1 to May 14, and then if they are free of symptoms, moved out on May 15. But in the meantime, person B could have been admitted to the unit on May 7, and begin to show symptoms of COVID-19 on May 17. Person A has now already been exposed to the virus before they were moved out of the unit, and were now potentially spreading it to other parts of the hospital.”

He said that standard employee screenings consist of three questions: “Have you been tested for COVID-19? Has a family member been tested for COVID-19? And, have you had a fever or a cough in the last 72 hours?”

“How is this helpful in any way?” the OSH worker wondered. “The first two questions are always going to be ‘no’ because practically no one is being tested. And the third question does nothing to address asymptomatic carriers.”

The worker also noted the near-complete absence of the physical presence of leadership during the crisis, which has “compromised any confidence in anything that’s being done.”

While senior administrators were rarely seen by front-line workers at the hospital even prior to the pandemic, according to this source, they have not been witnessed on the grounds of OSH since the pandemic began.

A “widespread” rumor has been circulating among OSH employees: “Maybe why we haven’t seen them is that they are all sheltering safely in their homes.”

Required to Work, at High Risk

A worker in a large public psychiatric institution in the Northeast shared a horror story of her own with Mad in America on April 10. From the beginning of the pandemic, this worker said, the conditions felt oppressive. “Staff who expressed concerns about the virus in meetings were yelled at by a high-level administrator and accused of being ‘hysterical,’” she said.

The worker became increasingly nervous about coming into the hospital due to her own underlying health conditions that put her into the high-risk category. She procured a doctor’s note attesting to this fact and put in a Family and Medical Leave Act (FMLA) request. She was told to stay home and use her sick time while the request was pending, and was given written assurance via email that the application would be approved.

After a few days of hearing nothing, she asked for an update and was emailed a denial letter. Now, she is all out of sick leave and must go back to work immediately. Her partner is unemployed. “I have a mortgage to pay,” she said.

She expressed authentic care and concern for the patients she works with at the hospital but said that while necessary, social distancing requirements make it impossible for her to do her job properly. “There’s no chance to have a private conversation with somebody on a unit,” she said.

This hospital worker said administrators did not respond to recommendations from staff regarding creative uses of technology that would allow high-risk essential workers to provide remote support to people in care. “I could do a much better job supporting the people I work with if the hospital would allow me to work from home,” she said.

She is one of several immunocompromised persons on staff who has been denied FMLA and has been ordered to continue working. “They give us one mask a week that we’re supposed to reuse, some shitty little paper mask.”

She reported that one of her fellow hospital workers, who is currently on immunosuppressive therapy, recently said to her, “They’re not going to pay for my funeral, are they?”

The hospital staff has formed a private Facebook group to support each other.

One week later, this worker reported that conditions at the hospital had improved somewhat, although she still feels far from safe. “We are now getting a new surgical mask every day,” she said. The National Guard had come in to decontaminate during the past week, and all the patients were tested for COVID. As of this writing, the worker said the hospital was not testing staff. Those who failed the daily verbal screening were encouraged to get tested.

Currently, at least twenty staff have tested positive for the virus, and five patients have, she said. “They [the patients] probably all got it from us.”

While the hospital finally granted hazard pay to the workers, she said that licensed workers receive an additional ten dollars per hour, while unlicensed workers receive half that amount. “Unlicensed workers such as myself are sacrificial lambs,” this hospital worker said. “As if my safety is worth five dollars less an hour.”

“People Are Just So Vulnerable”

The mismanagement of COVID-19 in psychiatric hospitals runs the gamut from state-run facilities to private facilities, including hospitals with world-class reputations. A father spoke to Mad in America about his family’s experience with a famed high-end private psychiatric facility in the Northeast. While he declined to name the institution directly, he provided a hint: “Think ‘James Taylor.’”

His 27-year-old daughter attempted suicide last November. Following the suicide attempt, she checked herself into the hospital and ended up on a short-term unit (STU) which, as the family member explained, can sometimes turn into a longer-term unit. His daughter had been there for months by the time COVID-19 reached the U.S.

As the seriousness of the pandemic was becoming apparent, the hospital at first limited visitors to one at a time and banned outside food, the parent said. A few days later, visitors were banned altogether. He had stopped visiting his daughter at the hospital anyway, as he was self-quarantining due to his own immunosuppressed status.

On March 19, this father began to suspect that something was amiss at the fancy institution. His daughter had authorized her parents to communicate with her social worker; in a conversation with the social worker while the “one visitor at a time” policy was in effect, he informed her that his wife would be visiting later that day. According to him, the social worker said, “Oh no, so can’t she [your daughter] come home?”

The parent recalled, “I was baffled. We had never discussed my daughter coming home. We were searching for another program. And I had already explained to her that I was quarantining and at-risk myself.”

“I told her, ‘No, our daughter cannot come home. She has been exposed to too many people,’” the parent said.

This father and his wife were in constant contact with their daughter, who was allowed to possess a cell phone on the STU. She texted her parents on March 21 saying that the staff had just informed the residents that a COVID-19 patient was being brought onto the unit and that there would be some new restrictions on what areas of the STU the residents could access.

The daughter was sending her parents increasingly frantic texts. Staff was not gowning up going in and out of the unit where the COVID-19 patient was quarantined, she texted. Her door was two doors down [from the COVID-19 patient], and she could hear her coughing, she told her parents.

“You have to understand that this is an old building, and a small unit,” the father explained.

He also suspects that the staff had been untruthful with the residents to calm them down. When staff told residents that a COVID-19 patient was being brought onto the unit, they were each given face masks and told that the room where the patient was quarantined was “negatively pressurized.”

“It’s a lie,” the parent said. “One of the other residents had stayed in that room before and told my daughter that there was nothing whatsoever to indicate that it was negatively pressurized.”

According to this parent, the first night that the COVID-19 patient was brought onto the unit, two families showed up and took their loved ones out of the hospital.

He called his daughter’s psychiatrist the next day, but the psychiatrist never called back.

Instead, an administrator, “someone I had never met,” contacted him, he said. “Why would you not give the patients more advance notice of this?” he demanded to know. The administrator said something about “behavior management.”

“You should have let families know,” the parent said. “We could have put plans in place.”

“My daughter was begging and crying, ‘please come get me,’” the parent said. He was becoming increasingly alarmed because his daughter also had an underlying health condition that put her at risk.

On March 22, more COVID-19 patients were brought onto the STU. And on March 23, the daughter signed herself out.

This father said that she is now quarantining alone in a private location, where she has a few friends checking in on her through the door and bringing supplies.

“It’s scary to have her out there, alone,” he said.

He added, “We have been aware through every step that here we were, able to access ‘top care,’ and it was still so hideous. What happens, who you have to deal with, the mistakes that were made. People are just so vulnerable.”

“This is Deplorable”

Sevigny, for her part, was given a mask upon admission to the psychiatric unit in the large public hospital and was told wearing it was mandatory in common areas, but optional in her room.

Sevigny stepped into her room, only to be horrified at what she saw. First, she had a roommate. Second, the beds were nowhere near six feet apart. Third, Sevigny chose to wear her mask; her roommate did not.

“We had to eat in our rooms, at desks, [which] were about three feet apart,” she said.

Sevigny was well aware that while she had been tested for COVID-19 in order to be medically cleared for transfer to the private facility, that was not necessarily the case with other patients who had come through the ER.

Towards the end of her stay, Sevigny said that her roommate developed a “very nasty-sounding, dry cough.” She reported her roommate, telling her, “I don’t want to scare them, but I don’t feel good.”

As a licensed nurse, Sevigny felt ethically obligated to get someone additional help for her roommate. She tried to talk to a mental health worker on the unit, who waved her off, saying, “We heard it [the coughing]. She’s fine. She has no fever.”

She then found a “friendly-seeming” doctor on the unit and asked if she would look into it. The doctor said that she would, but nothing happened. When Sevigny asked her roommate if anyone had come to check on her, she said they had not. “Hours go by, and she’s still coughing.” While she was assured that her roommate’s condition had “been reported,” Sevigny left before knowing if she received further care or testing.

Sevigny told Mad in America that the hospital was still conducting large group therapy sessions. As a trained medical professional, she was alarmed that staff was not adhering to guidelines issued by her state’s governor, which prohibited groups of more than 10 individuals from congregating at any given time.

She began counting the number of people in the group therapy rooms: “Every time, the groups were between 12 and 14 people.” Sevigny describes individuals sitting in close quarters around a large, square conference table in one of the group rooms, “chair to chair to chair.” In other, more popular, groups, people were packed in “elbow to elbow,” as Sevigny characterized it. “Those were the ‘good’ groups: the music groups, the groups where you can write with actual pens.”

As a writer, Sevigny finds access to writing materials essential for processing difficult experiences. But she soon discovered that her treatment plan stipulated that she was only allowed to have a pen to write with if she attended group therapy sessions. When she tried to object to being coerced into attending the crowded groups, the staff responded with a veiled threat: “It’s in your best interest [to attend the groups], and we want your discharge to go smoothly.”

Sevigny described a surreal atmosphere in which what she was being told did not match up with what she was seeing with her eyes. For example, staff kept assuring her that physical distancing measures were in place on the unit. She recalled taking workers to the window of one of the densely-packed group therapy rooms, and asking, “Where?”

“Well, they’re choosing to sit that way,” one of the hospital workers said. Sevigny was stunned.

But she said that the workers with a cavalier attitude towards COVID-19 protocols were in the vast minority, describing a pervasive culture of fear on the unit. “They were scared for themselves, and for their families that they had to go home to.”

She also encountered a widespread sense of invalidation among staff, because, as they confided in her, workers in medical units and ERs were considered “first-line,” but psychiatric hospital workers were considered “second-class citizens.”

Sevigny remembered saying in response: “Welcome to my world.”

The personal crisis that brought her to the ER faded temporarily into the background of what she was experiencing on the unit. She said that she asked a nurse: “I literally have no issues right now except that I’m scared to death. What can I do to help you?”

The nurse asked her to get the truth out about what is happening on the unit and to do what she could to help create change. “This is deplorable,” she told Sevigny.

Sevigny is also worried that the psychiatric unit may be concealing potential COVID-19 cases. On the day of Sevigny’s discharge on Friday, April 17, she said a woman receiving care was suddenly, mysteriously moved off the unit. “I get that HIPAA applies and they can’t tell us about her health conditions. But if she had COVID-19, didn’t we have a right to know?” she asked.

Now that she has been discharged, Sevigny is getting the truth out, just as the nurse asked her to do. She also plans to continue to organize in her state, with and on behalf of those who continue to be subjected to dangerous conditions in the name of care. In a statement shared with Mad in America, she called for peer-run crisis supports to reopen at once.

“Why are needs that once before could be helped at a respite level of support now considered to require an inpatient level of care? It’s because there are no real alternatives. All of my state’s alternative crisis facilities have stopped admissions.”

“In my state, they are being very creative at making new units available in places needed to close for medical [COVID-19] beds. This is crucial indeed. However, the patients are now waiting in ERs for sometimes days, then being forced to go inpatient on a psychiatric unit, ultimately putting a life at an unnecessary risk.”

“This needs to change, immediately. Safely, of course,” Sevigny wrote.

Mad in America will continue to monitor the situation in public and private psychiatric facilities as they unfold. Share your experiences by emailing news@madinamerica.com

*********

MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post Life Inside America’s Psychiatric Facilities During the Pandemic: Eyewitness Accounts appeared first on Mad In America.

News outlets nationwide report being contacted by fearful workers and family members, who insist on anonymity to avoid retaliation. Employees of Manhattan Psychiatric Center in New York told POLITICO that the hospital, which is run by the state’s Office of Mental Health, has “rejected workers’ requests to work from home and has threatened retaliation against those who do not come in.” Workers at a Milwaukee public psychiatric hospital told the Milwaukee Journal-Sentinel that supervisors threatened to write them up for wearing protective gear. And patients at St. Elizabeths, the District of Columbia’s only public hospital, have had enough of the unsafe conditions and are now suing the institution.

To make matters worse, there has been a dearth of information from psychiatric facilities, leading to chaos and confusion. A recent report by the Judge David L. Bazelon Center for Mental Health Law noted that “Psychiatric hospitals, like correctional facilities, are potential incubators for the virus. While the danger has been recognized, little information is available about the steps states, localities, and the hospitals themselves are taking to mitigate the danger.”

The Bazelon Center reported that the American Psychiatric Association’s guide to state actions in response to COVID-19 focused on risk mitigation in correctional facilities but not in psychiatric hospitals.

State-Run Facilities Decimated by the Virus

Psychiatric hospitals’ mismanagement of their response to COVID-19 has taken on a disturbingly similar pattern from coast to coast, with many state-run facilities that were underfunded prior to the pandemic being particularly hard hit. Hospital workers say they were being systematically prevented from wearing PPE until an outbreak or the death of a staff member or patient occurred, at which point such policies were reversed, but serious problems persist. Here is a sampling of just some of the news reports emerging from around the country.

New Jersey

On April 3, The Trentonian reported that the Trenton Psychiatric Hospital administration may have covered up the COVID-19 death of a 60-year old man, said to be the first such death within the walls of New Jersey’s four state psychiatric facilities. Further, staffers at TSP told The Trentonian that the hospital’s CEO, Robyn Wramage-Caporoso, “exploded and abruptly ended” a call with union officials regarding conditions at the hospital. Employees allege ongoing coverups of deaths.

Health commissioner Judy Persichilli on Tuesday acknowledged dozens of infections but not deaths at state's four psychiatric hospitals. That's not what staff at Trenton Psych have told @Trentonian https://t.co/UmZozcp6MA

— Isaac Avilucea (@IsaacAvilucea) April 7, 2020

Wramage-Caproso is also accused of “blatantly ignoring” social distancing mandates, forcing staff to attend meetings where they are sitting in close contact. PPE has not been provided, workers said. And someone connected with the hospital started a Change.org petition about the unsafe conditions directed to New Jersey Governor Phil Murphy, which reached nearly 1,000 signatures.

On April 10, a NJ Advance Media investigation found that the number of patients and employees testing positive for COVID-19 within the state’s psychiatric hospitals had tripled over the course of the previous week, to over 200 cases. Employees from Ancora and Greystone Park hospitals had sent letters to NJ Advance Media alleging that senior management had not been transparent with staff about the real-time numbers of infections.

According to the most recent data reported by the New Jersey Department of Health, 97 patients and 237 staff have tested positive for the virus, and 6 people living in the state’s four psychiatric facilities have died.

District of Columbia

A COVID-19 emergency has been steadily escalating at the District of Columbia’s only public psychiatric hospital, with advocates warning from the start of the pandemic that the institution was not prepared to practice the necessary precautions to contain the spread of the virus.

Civil rights groups had been fighting for better conditions at St. Elizabeths even before the pandemic. The American Civil Liberties Union (ACLU) of DC, the Washington Lawyers’ Committee, and others filed a federal class-action lawsuit against the hospital in October 2019 after it lacked clean, running water for 27 days last year, forcing residents to live in “disgusting” and “unsafe” conditions.

Beginning in mid-March, the activist network Black Lives Matter DC began to sound the alarm about the hospital’s lack of preparedness for a potential outbreak, urging residents of the District of Columbia to call Mayor Muriel Bowser.

St. Elizabeths hospital is NOT ready for novel #coronavirus.

– Still accepting admissions & visitors but not screening for #COVID19
– Not providing masks
– Hand sanitizer has zero alcohol

@MayorBowser is neglecting DC’s most at-risk workers & people. Call now! pic.twitter.com/F82DYvOp0j

— Black Lives Matter DC (@DMVBlackLives) March 17, 2020

Also in March, the Washington Lawyers’ Committee began writing a series of letters to the hospital’s administration, citing concerns about the speed at which patients were being evaluated for release, as well as the conditions within the hospital itself.

St Elizabeths patients are at risk from COVID 19. Any patient who can be supported in the community should not be in the hospital and intensive infection controls imposed for those who remain. Washington Lawyers' Committee seeking plans from DC. https://t.co/xpLQiYHL2q

— Jonathan Smith (@JonSmithWLC) March 16, 2020

Initial reports about workers and patients testing positive for the virus began to surface on April 1. That day, Andrea Procaccino, a Disability Rights D.C. attorney who advocates for residents of St. Elizabeths, told The Washington Post that her agency had already been contacted several times by patients concerned for their safety. “St. Elizabeths does not have as robust of an infectious disease department as medical hospitals do,” she told the Post. “We are concerned that the infectious disease staff is not prepared for an outbreak and will not have adequate resources and personnel.”

In a letter dated April 2, the Washington Lawyers Committee wrote to the D.C. Department of Behavioral Health, pleading for the hospital to reduce the population: “We renew our request that you evaluate every patient for community placement and either release or make appropriate recommendations to the Court to place patients in community settings.”

We are requesting:

The Emergency Preparedness Plan
Details of the infection control campaign
Number of patients by category
Number of patients released on 3/11
Number of patients admitted since 3/11
Plans to mitigate admission
Plans to evaluate patients for release

— Washington Lawyers' Committee (@WashLaw4CR) April 3, 2020

The D.C. Public Defender Service filed an emergency motion in the D.C. Superior Court on April 3, requesting the release of people charged with misdemeanors undergoing competency proceedings in St. Elizabeths and the D.C. Jail.

That same week, D.C. health officials announced the death of the first patient at the hospital. By April 10, DC attorney James Ziegler Tweeted, “There is a crisis at St. Elizabeths, the District’s public psychiatric hospital.”

https://twitter.com/jameskzeigler/status/1248773181604794374?s=20

Other attorneys and activists took to Twitter to express their outrage:

10 days ago, just 1 patient at St Es—D.C.'s only public psych hospital—had tested positive. Now 15 patients have, and reportedly 3 have died. State psychiatric hospitals are ill-equipped for infection control, and patients at St Es are there under court order and can't leave. https://t.co/zNGL6xlgeY

— Josh Kaplan (@js_kaplan) April 11, 2020

So much for a plan. 3 patients have died. As of last evening: 15 patients and 30 staff had tested positive, 142 patients in “quarantine or isolation due to exposure to or symptoms consistent with COVID-19,” and 73 staff “in quarantine due to COVID-19.” Definitely more today.

— Luke Barnekow (@LBarnekow) April 11, 2020

3 patients from DC’s psychiatric hospital have now died from COVID-19. Still, no public comment or confirmation from @MayorBowser or @DBHRecoversDC. Are they trying to hide these deaths or do they just not care?

— Luke Barnekow (@LBarnekow) April 10, 2020

In a striking new development reported by WAMU-FM on April 17, residents of St. Elizabeths are now suing the hospital. Represented by the same civil rights groups that filed last year’s class-action lawsuit on the water stoppage, the patients say it is impossible to practice social distancing, that they don’t have masks or PPE, and that the hospital was not quarantining those exposed, but not exhibiting symptoms. The Washington Post reports that most hospital residents are now under quarantine.

Four patients are known to have died from the virus as of this writing, and court documents say nearly 80 other patients and workers are positive for COVID-19.

Kaitlin Banner, deputy legal director at the Washington Lawyers’ Committee for Civil Rights and Urban Affairs, said in an April 16 statement that the facility serves a large population of people of color, many of whom live in poverty, and all of whom are disabled. “The lack of regard for their lives and safety is breathtaking,” Banner said.

BREAKING: Together with @ACLU_DC & @arnoldporter, our suit against St. Elizabeths was amended for their inadequate response to #COVID19, after four deaths have already occurred.

Read the full press release here: https://t.co/IEQEBQVmyo pic.twitter.com/SOiqBgaItP

— Washington Lawyers' Committee (@WashLaw4CR) April 17, 2020

Georgia

The notorious Central State Hospital in Milledgeville, Georgia began to make local headlines after a nurse died from COVID-19-related complications at the end of March. Local news station 13WMAZ Verify reported on April 1 that it had received over a dozen calls from hospital employees, who provided evidence that the administration had prevented them from using personal protective equipment (PPE), claiming that it violated the hospital dress code.

However, after a worker’s death, administrators began allowing staff to bring their own PPE into the hospital. In an April 6 statement, the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD) said that it was lacking an adequate reserve of PPE, and announced the arrival of a mask shipment five days later. On April 9, the Georgia National Guard’s Infection Control Team was brought in to begin decontaminating the hospital.

13 WMAZ Verify reported that Governor Brian Kemp sent a memo on the evening of April 11 to all hospital staff notifying them that a second worker at the hospital had died from COVID-19 complications. As of that date, 12 patients and 24 employees had tested positive for the virus.

They waited 10 days after the death of the first worker to do any testing at all and refused to test more than a handful of people. They threatened to fire anyone who didn’t show up for work even if they were showing symptoms and declared PPE/face masks against dress code.

— PenelopePickles (@penelopepickles) April 12, 2020

DBHDD Commissioner Judy Fitzgerald, who had visited the hospital during the second week in April, told the Oconee Radio Group that the hospital was “walking alongside” public health guidelines regarding testing.

On April 14, Governor Kemp announced that the state would be sending additional workers to relieve worker shortages in facilities across the state, with twenty additional employees heading to Milledgeville.

Most recent state data confirm 48 cases of the virus at the hospital as of April 17.

Washington

At Western State Hospital, the state’s largest psychiatric facility just outside of Tacoma, more than five staff members and two patients had tested positive for COVID-19 by the end of last month, prompting the Washington Federation of State Employees (WFSE), which represents the 2,700 workers at the hospital, to demand that administrators of the 850-bed facility improve safety measures. The union said that state agencies had waited three weeks to come to the table and had not presented any tangible safety plans as of the end of March.

Staff at Western State Hospital are on the front lines of the COVID-19 crisis while caring for some of the most complex mental health patients in the state. So far, @waDSHS's response to the crisis falls short of what caregivers need. https://t.co/LYS4ns19G2

— SEIU Healthcare 1199NW (@SEIU1199NW) April 8, 2020

Behavioral Health assistant secretary Sean Murphy told the Northwest News Network last month that the thermometers being used to screen employees at the door were not taking accurate readings. Murphy said that by the time the hospital realized that the batch of thermometers was faulty, supply shortages indefinitely delayed a further shipment. Hospital employees were then required to attest verbally to being symptom-free upon entrance.

Like other hospital employees around the country, the staff at Western State complained that they were initially restricted from wearing PPE, even as the virus steadily spread throughout the sprawling complex. After the union went to the Department of Social and Health Services (DSHS) management, the hospital reversed its policy and began allowing employees to wear their own PPE “at their own risk.”

Following the first COVID-19 patient death, on April 3 the hospital announced plans to discharge sixty civilly-committed patients to community placements. Murphy told The Associated Press on April 3 that Western State had already faced staffing shortages prior to the pandemic and, following the outbreak, had released some of the high-risk staff for their own safety, which further exacerbated the shortage.

A recent report on the hospital in The Seattle Times cited an “entanglement of challenges” including “aging buildings ill-adapted for 21st-century psychiatric care” and “a lack of beds elsewhere in Washington for patients ready to be discharged.”

Tensions between employees and the hospital’s management remain ongoing.

Oregon

Early on, Oregon State Hospital, which primarily houses people found “not guilty by reason of insanity” (NGRI) and people undergoing competency restoration to participate in court proceedings, severely restricted new admissions to prevent the virus from entering the hospital.

In a March 14 memo, hospital CEO Dolly Matteucci announced a new policy that resulted in a halt in admissions of people deemed unable to “aid and assist” their attorneys in their own defense, leaving them stranded in jail during a pandemic. This policy put the hospital in violation of a 2002 judge’s order requiring that criminal defendants court-ordered into psychiatric care be moved from jails to the hospital within one week.

“The implication of the policy is that the vast majority of people deemed unable to aid and assist their attorneys would not be admitted to the state hospital, but would instead remain incarcerated at a local county jail,” Disability Rights Oregon wrote in a letter to state officials on March 19. “There is no definite end to how long this prolonged confinement would last, and no one is currently in a position to make predictions.”

Even before the pandemic, the hospital had been out of compliance with the judge’s admissions order for nine months in 2019.

@DisabilityRtsOR Legal Dir. Emily Cooper: "The state hospital is leaving people in serious psychiatric crisis in jails indefinitely, leaving them vulnerable both to further mental deterioration and to COVID-19 infection." https://t.co/fCeBrKT3UR

— DisabilityRtsOR (@DisabilityRtsOR) April 9, 2020

By mid-April, the hospital suddenly reversed course and announced that it would resume the admissions process for “aid and assist” defendants.

Panic on Social Media

While multiple news reports and investigations have rightly focused on the spread of COVID-19 in U.S. jails, prisons, and nursing homes, much less media attention has been paid to what is happening in psychiatric facilities, where individuals are often not free to leave. Media coverage has typically begins only in the wake of a patient or staff death from the virus. Current and former patients, hospital workers, and loved ones have been taking to social media to express their dismay and to attract the attention of policymakers and the media.

Here are just some of their frantic Tweets:

I’m not even close to being on the front lines, but this shit is getting real now. Please stay home. I’m moving in with some coworkers until the patients are cleared because my parents can’t stay home and neither can I. Please stay at home. Please.

— lauren smith #BLM ACAB (@xlaurenxsmithx) March 27, 2020

My friend who works at Western State Hospital has texted me that the administration has banned their employees from wearing masks that would protect them from COVID-19. Can anyone explain this to me? #GiveThemMasks

— kathryn acosta (@AcostaKathryn) April 1, 2020

https://twitter.com/Trinitydraco1/status/1249039065703481344?s=20

https://twitter.com/IAmBumblebee/status/1246432034882543620?s=20

https://twitter.com/HeyItsCoops/status/1245883049247637505?s=20

And now, I can’t even imagine the terror that must be going through the prisons, jails, and state psych hospitals now as they are sitting ducks for a spreading pandemic. Having no control and knowing that the people in power are treating your life with reckless indifference.

— Ms. Frizzle goes to Court (@pennylope) April 3, 2020

Some psychiatric hospital staff have simply decided not to come back to work, citing unsafe conditions. As this former worker Tweeted, “Yeah, I’m good.”

I had second thoughts about leaving my psych hospital job and now they’re forcing their staff to work in different units (they weren’t trained for) to work with covid pts/staff and forcing to fire them if they refuse. Yeah I’m good

— J. (@PoshJay) April 9, 2020

Putting Profit Over Patients

Reports of poor management of the COVID-19 crisis extend beyond the state-run facilities to for-profit hospitals, including the poshest of private psychiatric hospitals.

Employees at the StoneCrest Center, a private 162-bed facility in Detroit, accuse the company of cutting corners when it comes to safety. “You’re putting profit over your personnel, you’re putting profit over your patients. And that’s really what the environment, that’s what we feel,” workers told WXYZ Detroit. Only last week did the hospital enact proper social distancing protocols. Prior to that time, employees told the news station, group therapy was being conducted with as many as fifteen patients sitting close to one another. At least five staff have tested positive for the virus, but employees still do not have proper PPE and are using cloth masks.

And at CenterPointe, a small private psychiatric hospital in St. Charles, Missouri, employees went to the media with allegations of mismanagement similar to those at the state-run facilities. A veteran staff member at the hospital complained to NBC 5 On Your Side about the hospital’s new corporate management, citing “many irregularities in the last year especially, but now with COVID-19, this is life or death.”

Employees told the news station that the hospital was not conducting proper sanitation or decontamination protocols and that they were told to bring their own cleaning supplies. Employees recount having to beg for masks, not receiving them until March 25, four days after the first patient tested positive for the virus. As of the most recent reports, more than 20 staff and three patients have tested positive for COVID-19.

Families of patients also contacted the news station to say that the hospital had lied to them about the outbreak and didn’t provide them with information about loved ones who had been exposed to the virus prior to discharge. “Think about the lives you’re affecting. Be honest with people. We can handle the truth and we deserve to know the truth,” family members told the station.

After whistleblowers went to the media, the hospital halted admissions temporarily to begin the decontamination process, and reopened on April 10.

Amidst a Pandemic, Familiar Policy Debates Arise

For decades, there has been a longstanding conflict between those advocates who call for abolishing the asylum and those who argue that it should be rebuilt. But as COVID-19 spreads through psychiatric institutions, pre-existing policy debates have taken on a new urgency.

Disability rights organizations and legal advocates had been fighting abuse and neglect in institutional settings long before the pandemic hit. They have argued consistently for fully-funded community supports and housing, which would reduce the demand for institutional care. These advocates were among the first to come forward when the nature and seriousness of the virus were coming to light.

https://twitter.com/MorganCShields/status/1244976033620807681?s=20

COVID-19 threatens the health & human rights of persons w disabilities in institutions: jails, forensic hospitals & psych facilities. Viruses spread quickly in these overcrowded spaces, w impoverished access to health care & where social distancing is impossible #socialmurder

— Tess Sheldon (@tesssheldon) April 6, 2020

In a blog for the National Health Law Program last month, attorneys Abigail Coursolle and Jennifer Lav argued that psychiatric hospitals face a “unique challenge” in mitigating the spread of the virus. “Like other health care settings, people in these settings often eat and bathe in shared facilities. An added challenge that is unique to behavioral health facilities is that many facilities still rely on restraint, seclusion, and involuntary medication—interventions which, while already dangerous, now have increased risk due to close contact,” they wrote.

Amidst a clear and troubling pattern of COVID-19 mismanagement within congregate care facilities resulting in employee and patient deaths, advocates continue to call for ongoing access to institutional care. Some are upset about new regulations from the Trump administration allowing the use of inpatient psychiatric beds for COVID-19 cases, according to the blog of journalist Pete Earley.

Others continue to advocate for a repeal of what is known as the “Institutions of Mental Disease (IMD) Exclusion.” This rule was enacted at the beginning of the Medicaid program in 1965 to de-incentivize states from overreliance on institutional settings and limits Medicaid funding to psychiatric institutions with more than 16 beds that are not attached to a general hospital. The IMD Exclusion has been a continued flashpoint between civil rights groups, disabled people, and ex-psychiatric patients on one hand and caregivers, law enforcement, and medical advocates on the other.

On March 25, pro-involuntary treatment advocate DJ Jaffe, writing in the National Review, called for a “swift suspension” of the IMD rule during the COVID-19 crisis: “The prohibitions on using Medicaid for the incarcerated and hospitalized mentally ill should be waived during the pandemic so that they can be treated appropriately.”

An Oregon State Hospital worker who chose to remain anonymous for fear of retaliation told Mad in America that he finds such proposals disturbing. “My life experience tells me that these people know ‘when the sun is out, it’s time to make hay.’ It’s an opportunity to continue to move forward an agenda that they have been promoting for decades.”

Policy proposals to increase access to institutional care during a pandemic run directly counter to guidance put forth by the Substance Abuse and Mental Health Services Administration (SAMHSA). A SAMHSA document from March 20 said: “Because of the substantial risk of coronavirus spread with congregation of individuals in a limited space such as in an inpatient or residential facility, SAMHSA is advising that outpatient treatment options be used to the greatest extent possible. Inpatient facilities should be reserved for those for whom outpatient measures are not considered an adequate clinical option.”

On April 9, President Donald Trump held a call about mental health and coronavirus with 177 “invitation only” listeners, according to Earley’s blog. Earley said that the purpose of the call was to “thank mental health workers who are risking their lives to serve individuals in need, and to tout what the administration is doing to help Americans with opioid addictions and mental illnesses.”

Both President Trump and Vice President Mike Pence referred to the mental health call during that day’s Coronavirus Task Force press briefing. An insider familiar with the contents of the call told Mad in America that while the use of psychiatric beds for COVID-19 patients was discussed, outbreaks in psychiatric facilities were not.

Still Waiting on the Promise of Olmstead

Kathy Flaherty, executive director of the Connecticut Legal Rights Project, recently documented her own experience trying to obtain a test for COVID-19 while navigating debilitating symptoms.

Flaherty told Mad in America that she has been frustrated by the lack of media coverage as the number of COVID-19 cases rises across facilities run by the Department of Mental Health and Addiction Services (DMHAS). “What will it take before the spread of COVID-19 within congregate settings for people with disabilities is deemed a higher priority?” she asks. “Will it take someone dying?”

Flaherty has been reaching out regularly to reporters and posting on social media about the situation at the state hospitals. According to the latest state data, 16 patients and 29 staff have tested positive, with the majority at Connecticut Valley Hospital and Whiting Forensic Hospital. The CT News Junkie reported last week on a doctor who contracted the virus in a DMHAS facility, who alleges the state is not doing enough to protect workers and residents.

In a Twitter thread on April 11, Flaherty shared a set of policy recommendations from the Connecticut Legal Rights Project. In the thread, Flaherty called for the state of Connecticut “to do what it can to prevent new involuntary admissions to congregate settings through the process of civil commitment,” “to discharge people to community settings with services and supports,” and to “ensure that people are receiving treatment in the least restrictive environment,” among other proposals. Flaherty also advocates for competency restoration in pending criminal cases to proceed “in the community rather than in a hospital setting.”

You may have seen other people on here put forward their policy proposals when it comes to people with psychiatric labels in this time of COVID19. These are mine (which means they also represent the official position of @CTLegalRights) [thread]

— Kathy Flaherty (@ConnConnection) April 11, 2020

In an April 16 statement, the Bazelon Center for Mental Health Law called for “serious efforts to be made” to discharge people from psychiatric hospitals to community supports:

Access to housing must be increased, including to meet the needs of people with serious mental illness who in other circumstances would be hospitalized. Newly available housing subsidies made available through the CARES Act should be used. Vacant hotel rooms and college dorms should be used. Trailers including those provided by the Federal Emergency Management Agency (FEMA) and even recreational vehicles should be deployed as needed.

In many cases, families will offer to temporarily house and care for relatives being discharged from or not admitted to hospitals. More will do so if support is available from community providers. Many nursing home residents are being discharged to live with families. The same can happen with psychiatric patients.

Last month, advocates in Oregon advanced a similar proposal for expanding care capacity outside of dangerous congregate settings. Disability Rights Oregon encouraged the state to use its emergency powers to lease or purchase rooms, with contracted staff on hand to provide care, so that those trapped in jail could have a safer place to go. The state declined this recommendation, saying that “establishing a hospital level of care in a non-hospital setting (such as a hotel) is simply impossible during the current surge.”

“The Supreme Court ruled in Olmstead v. L.C. in 1999 that people have the constitutional right to receive services in the least restrictive setting,” Flaherty added. “Unfortunately, our states have never fulfilled the promise of Olmstead by adequately funding a community-based system of voluntary services and supports. We need to end a system that relies far too much on coercion and treatment over objection.”

Flaherty continued, “It has never been more clear that a bed in a psychiatric hospital or any other congregate environment (jail, prison) is a danger to someone’s health and safety. We are showing that it is possible to provide shelter to the unhoused in ways that support their dignity and privacy. We can and must do better.”

Coming Thursday, April 23: Part 2 of Report on Life Inside Psychiatric Facilities During the Pandemic: Insider Accounts

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post America’s Psychiatric Facilities Are ‘Incubators’ for COVID-19 appeared first on Mad In America.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Leah Harris: You have written such a sweeping, stunning, anti-racist account of asylum history. Tell us about some of the personal and political motivations that you have for writing this book.

Mab Segrest: I’d love to do that, but thank you very much first for thinking it’s a sweeping, stunning account because it took me a long time to do. I really was determined to have a narrative that could carry along all the details that I had found in the people and their stories, in a way that was a sweeping history. At some point, I realized that the story of the Georgia Asylum was the story of the South, which is such an epic story of white supremacy with a revolution and a counter-revolution every couple of decades.  The story of the South is also the story of “America” with an acute lens of race. People are telling me that I have done that. I’m really happy about that because that was a necessary thing to do.

In terms of intertwined personal and political motivations, first was my continuing personal and political preoccupation with white supremacy, having been born in Alabama in 1949 and grown up in a conservative white family in the midst of a civil rights revolution by Black people.

I remember being very confused about my culture and my family, as it was contradicted by the forces that I saw sometimes in my front yard and on the steps of my church and in my school. [It was a Black revolution] that seemed to be surfacing the violence in the culture, and that in a way that made white people have to think about it. At [ages] 13, 14, 15, I think I was really primed to try to be that observer. [Mine] was of delayed action in sorting it through, but I really have been sorting it through for the rest of my life.

So that’s one of the things I brought into it: looking at racism with its complications of misogyny, homophobia, heterosexism, sex and gender systems, capitalism—all those forces and vectors. In what was my most notable book, Memoir of a Race Traitor, I talked about the relationship between the intimate and the historic, and asked, “what therapist would tell us to read history?” [In that book] I had tried to combine my narratives of anti-Klan work with memories of growing up as a child in Alabama and reflections on my family.

So I turned from the question of the “therapist telling us to read history” to the history of therapy or psychiatry and a kind of meta-discourse on these questions. [In writing Administrations of Lunacy] I also moved away from Alabama, and I moved away from a first-person narrative, to tell a larger story in which I was mainly located as the voice and the analysis, [not the main character]. So that was a huge shift for me. It was challenging, but I was very excited by having to be on that steep learning curve.

In addition to this childhood preoccupation, use of family material is a point of departure. My great-grandfather on my dad’s side had died in Bryce’s Hospital, which was the state hospital in Alabama. And it was a family secret until my aunt told me in my thirties. She said it explained all of our family issues. In about 1901, he was seeing people shooting at him from trees. And then he started to shoot back, and his family felt too threatened by that. So they sent him off to the state hospital, and he died six months later of a skin infection. She felt like his having been sent to the “loony bin,” as she said, really shaped her and my father’s childhood with the kind of shame that they had a “crazy person” in the family. I was very fascinated by that, too.

Southern literature had always been my refuge and source of information when I was in college, to try and understand the South more. And the asylum was in Carson McCullers. It was in Flannery O’Connor, who wrote from Milledgeville. Most of her more contentious and, some would say, grotesque characters I came to see had just marched straight out of the asylum into her pages.

So those Southern writers, many of whom were queer, “got” the politics of the asylum before social scientists did, before historians did, before Foucault did, and so forth. These Southern writers really queued me up for the Milledgeville story. McCullers, for instance, in Member of the Wedding: her little gender-bending 13-year-old white child was warned that she would be dragged off to Milledgeville if she didn’t be careful. Or in Tennessee Williams, at the end of A Streetcar Named Desire, where Blanche says, “I’ve always relied on the kindness of strangers,” as she’s taken off to Mississippi State Hospital because she was raped by her brother-in-law.

When I started looking into the Georgia State Hospital, partly inspired by McCullers, and curious to see what was going on, with a few Google searches over an hour, I found out it had been the largest state hospital in the world in the 1940s and 1950s when McCullers was writing about it. It had the largest graveyard of disabled people, and was considered, as I read into psychiatric history, “American asylum psychiatry writ large.”

And just a devastating, fascinating story. I went and started looking at the archives, and I spent the next ten years doing that. As I looked around, there was only one other history of a Southern asylum which asked the question of race, Peter McCandless’s 1996 book Moonlight, Magnolias, and Madness, but really didn’t delve into it. So I decided that rather than write an article on McCullers, I really wanted to write that history. That drew me into it, and it kept me there for much longer than I had intended, partly because of the complexity of understanding the material, gathering the material, and then writing it.

Harris: How does an explicit focus on white supremacy, looking at psychiatry through the lens of race and racism, challenge some of the existing asylum histories that, as you say in the book, have been primarily narrated by white men?

Segrest: An explicit anti-racist focus picks up the narrative and puts it down in a totally different place. Which is completely what I’m trying to do: to reframe the narrative of psychiatry, of asylum psychiatry, which is where psychiatry started, in these state hospitals in Europe and in the United States. Enlightenment philosophers and practitioners and doctors started to see that if they treated people well in these custodial institutions, if they fed them, if they got them away from home, if they let them rebalance, they could make the environment curative. It was called “moral therapy.” It started in Europe and happened in the United States, too.

But the moral therapy goes very south. I was tracing the Southern story, too. Once we turn South to examine how the Southern “exception” is the national narrative, much can be told.

The story of the Milledgeville asylum was compelling to me. To tell the story of psychiatry from a slave-drenched location like Georgia, starting in 1842, just as abolition was heating up, you will get a very different view. You tell a very different narrative. In Southern history, you have to be aware that race is so formative; that the conquest of Indigenous people was brutal as was a slave system; and the rebellion against it was heroic and still going on. I wanted to overlay the history of psychiatry and particular asylums, how they were being constructed, onto the sweep of southern and US history.  [That would shift particular studies]  which were usually fairly ahistorical in terms of some of the larger sweeps of Southern history, [the kind of perspective that’s]  emerged in American Studies over the past 50 years.

I wanted to have that history of asylum and I wanted to overlay it with the history of the South, of settler colonialism, how folks from England came here and decided to stay, and then had a revolution to take over control of the continent and its conquest. That settler colonial process, overlaid with psychiatry, gave a different kind of narrative. I think it’s a very different tale.

Some of the men writing psychiatric history weren’t attentive to questions of race or gender. They were looking at institutional histories, their role in the history of medicine, how psychiatry emerged from that. But there’s another set of historians who are “anti-psychiatric.” I was asked when I was at the National Humanities Center by a colleague, “Is your book anti-psychiatric?”

It took me a day and then I came back and I said, “No, it’s anti-racist.” There’s many things within psychiatry; I find psychiatrists doing both execrable and really commendable things within this history. But if you ask, “How is it anti-racist?” then you start to ask a different set of questions. It requires a different methodology, a different set of archives, and secondary sources. And it comes up with a different set of conclusions.

Harris: In addition to Southern literature and some of the other sources that you’ve mentioned, where were you able to glean some of the answers you were looking for in this anti-racist history of the Southern asylum?

Segrest: Well, I went to the places that historians generally go: the state archives, the local archives, interviews, newspaper accounts, and so forth. I had never done this kind of archival research before; I found it fascinating. There’s this whole experience of the archives, where you just enter imaginatively into a different world. It’s a detective story and it’s a treasure hunt. You find this piece and that piece, and you’re quilting together stories.

As a literary critic formerly, you just have a novel and then you analyze it. But with this material, you have to find the story, find the pieces of it, stitch them together in such a way that suggests a pattern, and then frame them. I spent 15 years on this book because it was such a complicated story, and I had set myself to do an ambitious task. So the Georgia State Archives was the first place I went. I looked up “Georgia Asylum” or “Central State Hospital” and it spit out a bunch of stuff, including annual reports. Not all of them, but lots of them. I copied as many as I could.

They also had asylum ledgers, which I had to get permission to use from the Secretary of State. I explained how my research was valuable to the people of Georgia, that I would respect confidentiality, and that I was a legitimate scholar; I was glad that they agreed with all those things.

And then there were also a set of case histories. From 1909 to 1924, these case histories had both the context of the medical exams but also the entry interviews with patients. And I was really electrified by the time I got to this material, because so much more of it had been just the ledgers talking about the patients, and it was very hard to get a patient’s voice there.

But all of a sudden here, in transcribed, typed interviews, you had this give-and-take. You had a range of Georgians, poor mostly, Black and white, men and women, answering questions like, “Are you happy? Are you sad?” Most of them were sad—to be in this institution. And the thing that made them happy was Jesus. Or, “Do you see visions? Do you talk to God?” Well, a lot of them talked to God. It’s called prayer, and that’s what was getting them through.

It was fascinating to me to see these new medical diagnoses being used to interrogate these folks. And then how it was interpreted in the staff meetings, which were also transcribed and typed. Those patient voices end the book; how they are battling sometimes with their doctors, who don’t really understand so much what they’re doing, and what that suggests about modernity and psychiatry.

There was also the Atlanta Journal and Constitution, which has been digitalized from 1868 to 1945. So when I was working in the Emory Library in Atlanta, I was able to type in “Milledgeville” and “asylum,” and the computer would just spit out all of these fascinating stories, because it was a hot topic for Georgians by the turn of the century. A very sensational topic, as it is today, and lots of folks had lots of things to say about it. That really filled in a lot of the details. And then one of the librarians suggested I look at Supreme Court cases. I got another level of narratives, as various aspects were getting adjudicated.

Then I talked to people all over Georgia who were fascinated by this story, because their families in Georgia, like mine in Alabama, had been profoundly impacted. By the fifties and sixties, it’s fair to say that institutions like these—certainly in Georgia—reached into almost every kinship network in the state. People knew what it was. They knew it was a terrible place to go. They were afraid to get sent there. And if you threatened them with being dragged off to Milledgeville, they knew they didn’t want to do that. They had better shape up. So all of those sources were a composite of where the book comes from.

Harris: Obviously, you’re covering a tremendous amount of ground in this book, but I wonder if we can start with the traumatic impact of the Civil War. In your estimation and study, how did the war’s impact land on both white and Black people in Georgia at that time?

Segrest: That’s a good place to start, but let me back up a little bit. The asylum was founded in 1842 and it closed down in 2010, so it’s 170 years of Southern insanity. (I do consider “Southern insanity” to be somewhat of a redundancy, given the culture.) One of the questions I was asking myself going in is, “How can a culture that permitted and even promoted lynching decide who is sane and who is not?” How does that happen? I was trying to figure that out, going back as far as I could, and also forward.

In the earliest 25 years, it was only white people who were committed to the asylum, because Black people were on the plantations. And the plantation could “handle” every damn thing—quite brutally, with force when it needed to. So white people were there until 1867, and then Black people joined them from Freedmen’s Bureau hospitals.

The Civil War then was this pivot moment in U.S. history, certainly in Southern history, and in Georgia history. A lot of the Civil War has been told, for a century at least, from [the perspective of] the generals and the battles; a very military history-obsessed version. I certainly grew up with that.

Robert E. Lee was a saint in Alabama for segregated white children. Jeb Stewart, all these guys, we knew their names. We knew what they did. We knew what their horses’ names were. In fact, Robert E. Lee’s horse was named “Traveler.” You may not know that, but we did.

Only recently has history turned to what happened to the soldiers. And African-American history has provided such a rich tapestry of what happened to enslaved people, and such a model for how to tell Southern history, including the histories of slavery, emancipation, Jim Crow, and so forth. I’d been very guided by that, especially W.E.B. Dubois, a brilliant, brilliant man.

So when you get to the Civil War, only recently have these psychiatric aspects been looked at; they reveal what battle and war do to people. These recent histories focus on the regular soldier, and what happened to that person, that man—mostly, that white man. Although Black men were fighting in the Union army, too. They were determined to fight for the freedom they’d wanted for 300 years.

And of course, slavery had always been traumatic. The Civil War added both an extra layer of hardship for African-Americans, but also gave this huge promise of freedom, especially as Northern troops took over more and more Southern territory. And the Black people knew it was coming. The South basically got its butt kicked in the Civil War, it got really seriously defeated, and was almost about to emancipate slaves in order to get more Confederate troops, which might not have worked.

And then Appomattox [happened], and the war was ended. But African-Americans knew as the war ground to what was going to be an obvious end, that they could soon fight for their freedom openly, and they would do that. So it’s a complicated story, I think, for Black people.

For white people in the South and the North, the Civil War caused more casualties than all the other wars in American history put together. And this is because it was civil war, so both sides get counted. But at 600,000 to 800,000 people who died, it was a carnage of world-historical proportions. Historians have said with the death rate six times that of World War II; in fact, three times more Confederate men died than Unions, because it was fought on the grounds of the South.

One in five Southern men of military age didn’t survive the Civil War. General Sherman’s total warfare in the South was made on civilians as well. His “March to the Sea” was scorched earth; just devastating the South as a way to break both the military and the civilian resistance, which he did.

Some of these historians then talk about what actually happened to these soldiers. Southern soldiers were having to go on forced marches over graveled roads. Many of them had no boots. By that time they were exhausted. They go into battle, saw this pandemonium, people being blown to death around them. They’re already exhausted. And then they’d sometimes just collapse. When the battle is over, they wake up, their adrenaline’s gone, and now they have to bury all their dead friends around them. It was something that would break both the mind and the body. These historians trace the way in which it breaks the body first and then it breaks the mind.

The prevailing explanation of “insanity,” madness, during the Civil War, was “heredity.” So if someone experienced a psychic break in this environment, it was considered first that they had “bad heredity.” We might call it “bad genes” later, but somehow their family stock was “deficient.” And if you had this, then you could break in these bad circumstances, whereas somebody with better “heredity” wouldn’t break. By World War II, the psychiatrists said, “No, some situations will break any person.” But the Civil War folks didn’t have that, so if they broke down they could be considered a coward; they could be sent to the front of the lines, and so forth, and that meant death.

I was fascinated with the Civil War because it was a chance to look at trauma and psychic health in the midst of one of the most intense traumas, on the battlefield. I traveled through these different periods of Southern history, sometimes with the soldiers, sometimes with the women at home, sometimes with the enslaved Africans, to see what happened to them, how it ended up in psychiatric records. And I found records of it during the war and immediately after. But they really dropped out by the turn of the century, by about the time when my great-grandfather started shooting at people he thought were shooting at him from trees. And there was really overwritten of that history, this theory of what we would call “mental illness” today, “lunacy” being caused by “degenerate populations.” Not by war, not by historical trauma, not by lynching, not by the convict lease system for Black people; not by all these stresses of history that kick off certain kinds of biological manifestations.

They weren’t caused by that. And because the psychiatric records didn’t really carry over the experiences of the war, it was possible to reconstruct these narratives about vulnerable populations—men, women, immigrants, Black people, poor people—into the Eugenics movement.

There’s this battle across psychiatry in the 19th and 20th centuries between those doctors and superintendents who see a mainly biomedical model: the body itself, and narratives about it and its experiences, but really outside of history. And there are those who want to look at what happens to the body and the mind in the context of what was called “socio-cultural variation” by one set of psychologists protesting the latest DSM. So it’s this “psychosocial variation,” this environment, this context, this history where the bodies and the mind are also located. The mind is part of the body, and the body’s part of an environment, and it’s part of history. I am arguing as heartily as I can that you have to really understand that whole history to see what happens to the body-mind in this period, and in this country.

Harris: And that is, I think, one of the many correctives that you’re able to offer in this book.

Segrest: I tried to show, too, that what happens to Black people affects white people. By the turn of the 20th century, the elites who are promulgating Eugenics hated poor white people, too. They wanted elite, “fit” white families like theirs, who were starting to make massive fortunes—the robber barons—and control commerce in the 20th century. Those people should be reproducing, and all these other folks are just “problems” and “failures.” And so, what do we do with them if they are inherently defective, if they’re inherently degenerative as a people—not because all these different things have happened to them, and they’ve been on the downside of this history that some people have been on the upside of. Well, we need to figure out how they don’t reproduce again. Surgical sterilization became the solution to that in the 1930s, but it started about 1900 at the Georgia Sanitarium.

Harris: How did Kraepelinian thought, the racial hygiene movement, and the Eugenics movement influence how asylum care was practiced in Georgia?

Segrest: Emil Kraepelin was a doctor working in the German system of clinics and research universities and framed mental illness as a set of diagnostic categories. Other professionals that he was in conversation with in Germany were doing similar things. But his set of categories elevated what he called schizophrenia, “dementia praecox,” and manic depression. The two major psychoses, as we call them today, became codified in textbooks that he wrote, and rewrote, and rewrote, and then they came over to this country. They emerged at a period where this moral therapy that the asylum had been imagined to bring about was breaking down in the face of overpopulation. The moral therapy would have been great with 300 or 400 people, or so its practitioners thought. But by the turn of the century, you have 3,000.

You have many, many more people being sent to these public institutions by folks at home, or their counties, whatever the administrative unit was, than could ever be handled in any kind of moral therapy way. The main thing that Kraepelin did was to categorize and classify what he saw as the symptoms into illnesses that had certain trajectories, and then write them up. So manic depression, schizophrenia came to the fore. One issue, though, was that in the 19th century, at the end of the 19th century, they moved into a period of therapeutic pessimism, because there was really no cure that they had found. So the main thing they could do was categorize and institutionalize. Kraepelin’s categories came out of that as well. So when they come to Georgia, you have had before 1910 in the annual reports, “cause of insanity” as the question. It would be “fell off a horse;” “had a fever;” women had various menstrual difficulties; “ate a peach kernel” (an idiosyncratic one); “lost a job;” “wife or husband died.” The kind of compilations of something that might’ve happened medically; something that was in the environment. My favorite one in 1908 was “drank too much Coca-Cola,” which I have had to be careful about myself.

You have this shift from such a set of categories to “is it manic depressive, is it schizophrenic?” And you have these doctors in these case histories trying to struggle between the two, and half the time not deciding, “Well, maybe it’s this,” “Maybe it’s the other.” They really didn’t have to decide in those case histories that actually contained the summary of their decisions, their verbatim conversations. They didn’t have to decide, because there was no treatment anyway.

People would be in there for their lifetime sometimes. Sometimes they’d be sent back home, but a lot of people were there for the lifetime, with no treatment, and with a diagnostic system that mainly just justified the reason that they were committed. To trace that shift into a more scientific nomenclature at a time where the asylum was very much turning increasingly into not only just a custodial, but a very punitive, institution that was starting to terrify everybody in the state of Georgia or across these States. Nobody wanted to have to be sent there, because they had very bad reputations. And so to follow those ideas through the various Diagnostic and Statistical Manuals, up until DSM-5, was part of my process.

[Of] the early DSMs, the first two were heavily influenced by psychoanalysis, which is what Freudian doctors brought to the United States, had experimented with in Europe, and was dominant in American psychiatry for a couple of decades. But by the 1970s [with] DSM-III, there was a turn back to biological psychiatry—to how the brain was constituted, how it worked, how various diseases and symptoms might occur from various kinds of brain functions that were happening in the body. But if that was mainly this biomedical model that wasn’t embedded in history and “socio-cultural variation,” then [this kind of thinking] could have the same dangers and damages as it had in the 19th century [that led quickly to eugenics].

So some of that was struggled out as I understand it, and I’ve seen in the psychiatric records in the profession into the 21st century this tension between the biomedical model outside of history or socio-cultural variation, and the model that takes into account community, environment, history in terms of a person’s mental and psychic states. This tension played through two centuries, and it played out through the DSMs, too.

I came into a realization of that discussion when a colleague in [psychology] gave me an “Open Letter to DSM-5,” from around 2011. And it’s from humanistic psychologists across all of these professions who were protesting DSM-5, as many people did, including the editor of DSM-IV. Because of these issues [with the biomedical model]—there was a lower threshold of diagnoses that created false epidemics, that targeted vulnerable populations. There was too much reliance just on [the] biomedical model and not on “socio-cultural variation” [which I call “history”]; there was a return to “deviance.” There were all of these things that had marked the worst in psychiatry [for two centuries], and been battled within psychiatry for more community-based, more historically-nuanced [approaches]. What the letter to DSM-5 called for was a rethinking of psychiatry and human suffering basically from the ground up. I was galvanized by the depth of this appeal.

I was very encouraged to see such a broad call for rethinking because it really was tracking onto what I was finding in these archives. If you want to rethink psychiatry from the ground up, then here’s some ground to think of it from: this ground in Georgia that I’ve been tracing could give some insight into what does happen when you look at human variation in history and culture, and what happens when you don’t, as a kind of object lesson.

As I’ve gone along, I feel like I have lined up with professionals in the field who are already fighting these battles. I feel more confident that archives and the voices I have found within Georgia have a broader story to tell to the nation from inside an asylum, an iconic asylum, the largest asylum in various places, a notorious asylum, an asylum from the depths of white supremacy—about what can happen when these balances go awry.

Harris: Such an ongoing lesson for us all that continues to play out. Moving very rapidly through the 20th century, one of the historical markers that you touch on in this book is the 1999 Olmstead vs. LC decision, a landmark a Supreme court decision. You make quite a definitive statement in your book about Olmstead, that it sounded the “beginning of the end” of the institution that you document throughout. Tell us a little bit more about Olmstead, why it’s so significant and continues to be so significant in this debate?

Segrest: Olmstead came out of Georgia. It came out of Atlanta Legal Aid and the very brave and valiant advocacy by Lois Curtis and Elaine Wilson, two Georgia women who had spent their lives in and out of Georgia psychiatric facilities, and maybe sometimes the jails. Lois called Atlanta Legal Aid for help. And the lawyers, led by Sue Jamieson, applied the new Americans with Disabilities Act to the situation that was rampant across Georgia state psychiatric facilities at that point, to say that it was against patients’ rights to be involuntarily committed and held against their will. That the segregation and congregation of disabled people, both cognitively disabled people and people believed to be “mentally ill,” to take them out of the communities was a violation of their rights. And that they deserved treatment as near to home, if not in their homes, as was feasible by the budget, which is always a big question.

It was the victory of a set of abolitionists who had been working to abolish the asylum in its worst kind of manifestations for 50 or more years. It was a high watermark of rights for disabled people, rights for “mentally ill people,” rights for cognitively disabled people.

Harris: Given what you know about Milledgeville and the history of asylum care in general, what do you see as the uses and the abuses of the history of trans-institutionalization, of jails and prisons taking the place of mental institutions? This narrative can sometimes be used to justify the expansion of involuntary care or even a re-incentivizing of institutional care, calls to literally “rebuild the asylum.” What are your thoughts?

Segrest: First let me say I’m not a professional in this, and I have never been myself committed to an asylum. I’ve never been diagnosed with a psychiatric category. So I’m writing this, not having had that lived experience and I very much respect the point of view of the people who have. I’ve tried to incorporate that as much as I could in my narrative.

There was a process of deinstitutionalization that happened in the 1950s and 1960s, and turned out, I think, tragically as tragic as the asylums had turned out by mid-century. It was motivated because the asylums themselves had become derelict places. The end of World War II opened up concentration camps in Europe and showed their terrible effects, but people could make a parallel to what had happened in these state hospitals, and the people in them, when they had been constrained that way. People were also somewhat more attuned to the dangers of ideologies against disability, because Hitler’s first set of targets were disabled people. His Aktion T-4 Program in 1939 took all the lists that the eugenics folks had assembled of folks in state hospitals, and the various forms of disability and mental illness and asylums—and then took them to the gas chambers.

That was the first time that had been done: the use of gas chambers by Nazis. It was the first part of Hitler’s extermination; it was the only one that had gotten a lot of pushback from German people. But a lot of disabled people got killed in those institutions. All of that history finally came out in the wash post-World War II: People knew that eugenics had not been a good thing, that these institutions in Germany with terrible things, and there were certain kind of reverberations about how we treated, number one, both Black people in the South if we’re claiming to be a democracy, but also “the mentally ill.” If we look at the history across these institutions, they are really what one journalist [Albert Deustch] called the “shame of the States.”

And this interior story of the institutions in the United States had happened because there were 3,000 conscientious objectors who didn’t want to go to World War II and went into state mental hospitals, many of them working as orderlies in the most so-called “menial” positions, with the most contact with patients. And they really revolutionized this work, because they brought kindness and spiritual practices and political beliefs and consciousness into it. [They] began to reshape understandings of mental illness. to shape public educational programs, and also to document the abuses in these institutions.

So by the time the war was over, you had this internal evidence and you had this climate of human rights. The Universal Declaration of Human Rights is passed in 1948. You had a different climate. People knew that the institutions had failed, and then it seemed that medications had come along. Thorazine was the first one that was purported to be this “miracle drug” by psychiatric journals that had taken a lot of money from drug companies. It turned out not to be quite so miraculous. It turned out to have a lot of side effects.

But before some of that played out, John F. Kennedy, inspired by the new “miracle drugs,” put forth a new vision for mental health that would become deinstitutionalization—getting people out of these asylums to community care. But he also thought that there should be community health clinics all across the country. So when people came out of these asylums into their communities, they had care there. Their families were helped, they were helped. That was the plan.

Well, many of those community institutions didn’t get off the ground, and many of the ones that did continued not to be funded. So the community care that’s supposed to be there got displaced by the budget cuts that happened under Ronald Reagan, the austerity that cut social programs and fed the military, so that people came home to not enough help. And they ended up in this period of trans-institutionalization, where they bounced around from the hospital and psychiatric clinics to jails, to under bridges, on their relatives’ sofas, or sometimes getting shot in confrontations with police.

That was a tragic situation, and it was made tragic because communities were never given the funds to do the kind of work at home that the state hospital was supposed to have done in a place like Milledgeville or Bryce’s. It was underfunding Health and Human Services and over-funding the police. So how all of that came together, I think, points to a continuing failure of politicians with this point of view to pay for human needs. And when we don’t do that, we get the results.

I think that the call to “return to the asylum” is a huge red flag that this is a resurgence of the most regressive forces in 200, if not 400 years of United States history. Certainly 200 years of psychiatric U.S. history, and enslaved people first came 400 years ago. This is the most regressive set of policies. And we haven’t broken those policies. It’s what African-American scholars call the “afterlives of slavery,” because we haven’t broken white supremacy. It just keeps reinventing itself. So we have the first Reconstruction, the second Reconstruction, now it’s mass incarceration, it’s a new Jim Crow, and we incarcerate more people than any other advanced industrial country. It’s just obscene. We’ve gone from 300,000 prisoners in 1980 to 2.3 million prisoners in 2010.

When you have that kind of investment in a system of incarceration, a kind of Gulag system, then psychiatric beds kind of got eaten up in that, and the asylum was intimately linked to that. So if you’re going “back to the asylum,” you’re really just keeping it embedded within a prison system, which does not do any person any good. The most eloquent testimony to this is from the National Sheriff’s Association, where individual sheriffs know they are not set up to treat “mentally ill people,” which they find dreadful public policy that is “incomprehensible.” And there’s all sorts of negative repercussions on those people who were “treated” inside jails and prisons, because they’re just not set up for it. Of course they are not.

So how in the hell did we get in this situation? Why is it as tragic sixty years later as it was before they’d been deinstitutionalized? How do we keep ending in a tragedy for this question? You have to think it’s not accidental. There’s a set of really bad ideas like enslaving people, lynching people, sterilizing people. There’s a history of these ideas and we have not broken their hold. We have shifted away from them, we have alternative policies, but we are still in a life-and-death battle over how to constitute our society, what to pay for, what to not; what the role of the state is, how capitalism shapes us. We are in a battle to the death over all of these questions, and the psychiatric piece is up in it.

Harris: Returning to the question that you started off with in your book: “How does a state that conquered Native peoples, innovated and administrated the system of chattel slavery for Africans, encouraged or refuse to stop the atrocities of lynching and developed Jim Crow—how could that state, be it Georgia or the United States, decide who was and was not sane?” As you said, it’s continuing to morph and change. So given all of that, do you think that the state should have that right to decide today?

Segrest: Depends on what state it is. If you’re in a state and a national system that’s promoted all of these things, slavery and Jim Crow, then that state is not going to be very trustworthy. But there’s an opposition movement in there that has fought for abolition, that has passed the 13^th, 14^th, and 15^th  Amendments, that has battled Jim Crow, that has repassed civil rights bills, that continues to struggle in these ways for a more just country. There’s a battle in this country for who actually controls the power of the state. And there are models for a more humane kind of welfare state. Some people would say they make people too “dependent.” But this is a culture [that] is so extreme from that, where people are so vulnerable, they have so few protections from anywhere, anymore.

So what state is it? The state that’s being controlled now over the past three or four years, since the past election? The people in charge of the state now consider it the “deep state” and are trying to dissolve it, so God knows what it leaves us, except vulnerable to everything. Those people? I so don’t trust them; it’s hard to find the words to express how much I don’t.

But there are other folks who haven’t given up on a state that can be more humane or who are working at local levels with city councils, with commissions, with state legislatures. There’s a huge division in the country between red and blue. I don’t think it’s exactly like that, but we’re still fighting all this stuff out.

I would not give up on a state that knows how to manage things, and knows how to manage things for disabled people, that knows how to manage things for people who are working on questions of mental health.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post Narrating Asylum History Through an Anti-Racist Lens: An Interview with Author Mab Segrest appeared first on Mad In America.

People relegated to the margins of society have long known that they can’t necessarily depend on systems for their survival. For example, Mutual Aid Disaster Relief emerged from New Orleans communities of color forgotten in the wake of Hurricane Katrina, when public authorities responded to demands for help with automatic rifles.

As activist Reyna Crow from Duluth, Minnesota told Mad in America, “I have learned not through this, but previous crises that have affected me similarly for protracted periods of time, that it is those who have already been there I can turn to for real support. Systems aren’t effective or safe in my case. Community is the best way to try to ensure we all get our basic needs met.”

Psychiatric survivors have had to practice mutual aid for decades to save their own lives. “Grassroots peer support practices were developed out of necessity by psychiatric survivors,” Darby Penney wrote on Mad in America. As Penney explains, these groups arose in the 1970s “in reaction to negative experiences with mental health treatment and dissatisfaction with the limits of the mental patient role.”

While social distancing imperatives in the face of COVID-19 are forcing much of the world onto Zoom, grassroots peer-led mutual aid projects have existed in virtual spaces for decades. Mad and disabled people intimately familiar with isolation have long found one another online. As Kevix, a mad, autistic activist from Brooklyn told Mad in America, “’Social distancing’ is something society has done to me for 50 years. Learning I was autistic at age 40 and utilizing online community saved me from social and intellectual isolation.”

Since the early aughts, independent groups such as The Icarus Project have hosted active discussion forums for people seeking to provide support to one another in a host of ways. Individuals withdrawing from psychiatric drugs, unable to find reliable information from the medical community, have also been turning to each other on similar forums for decades.

Some of these communities eventually moved onto Facebook and other social platforms, but have retained similar functions. And in the current pandemic, a variety of peer-led projects are experiencing an unprecedented resurgence.

“Peer-controlled” Crisis Supports, Online

Inspired by The Icarus Project and other mutual aid projects, Alyssa Cypher started the radical mental health collective Inside Our Minds as a blog in 2016. “We base our philosophies in social justice perspectives on mental health,” Cypher told Mad in America. “It’s very important for us to be ‘peer-controlled,’ which is entirely run by people with self-defined lived experience.”

The group eventually received funding from local foundations to do events in the Pittsburgh, Pennsylvania area. These included a Radical Mental Health online workshop series; a monthly Mental Health Cafe “focusing on informal discussions and friendly mutual aid in a welcoming space for all;” as well as an Anonymous Open Mic, a live storytelling project that includes an opportunity for those who wish to remain anonymous to request another performer of their choosing to tell their story onstage.

Transitioning in-person programs online was not a major disruption for Inside Our Minds. “We were very locally centered in Pittsburgh, but we always had online opportunities for accessibility purposes,” Cypher said. “So when the pandemic went down, we were able to very quickly switch to online because we were already offering those things.”

Cypher expressed mixed emotions regarding how the pandemic has made possible the kinds of accommodations and access that disabled people had long been asking for, and had often been denied. Speaking of new virtual mutual aid spaces online, Cypher told Mad in America, “It’s trendy right now because it’s necessary, and a lot of people in our community are very happy for the opportunities, but also upset that they weren’t accommodated earlier.”

Among the people who are attending Inside Our Minds mutual aid groups, Cypher reports that, not surprisingly, a sense of isolation is the most common theme. She’s also had private conversations around access to resources for people currently facing situations of domestic abuse.

Participation in the online groups has now extended beyond Pittsburgh into other areas of the U.S. and internationally. The work runs the gamut from providing emotional support to connecting people to their local mutual aid networks: “We can connect across the coast, but I can’t deliver groceries to people on the other side of America,” Cypher said.

Mutual Aid in “Every Sense of the Word”

In Portland, Oregon, Molly Indrelie had already been organizing meetings for the last 18 months as part of the independent mutual-aid group and neurodiversity club Reimagining Recovery. Indrelie began organizing the groups around the city in 2018 and runs a Facebook group of the same name with over 168,000 followers.

Before the pandemic, Reimagining Recovery had been discussing mutual aid topics such as “Coping with Climate Grief” and “Beyond the Rehab-Industrial Complex.” Indrelie had initially tried to offer online groups but found the in-person events to be more well attended. Now, Indrelie says, the online groups are attended by about 50 percent locals, with the rest being new national and international participants. Like Cypher, Indrelie sees the creeping impacts of social distancing measures: “There’s a lot of people in isolation, struggling.”

Indrelie says that the daily groups are mutual aid “in every sense of the word.” A self-described autodidact who dropped out of high school, she added, “It would be easy to see what I’m doing as just ‘volunteering,’ but I get so much out of it. A lot of the planning that I do for the meetings is the kind of stuff that I’d be researching and learning about anyways.”

Among a host of subjects, the groups have discussed the impact of ageism and ableism in the current climate. Narratives stating that the coronavirus is only likely to kill “the elderly and the immunocompromised,” as well as conversations about rationing of life-saving supplies, cause disabled communities to feel disposable and threatened. Indrelie told Mad in America: “There’s eugenics sentiment rearing up, and that’s fucking scary. And, Trump wanting to make it easier to forcibly treat folks is also very scary and worrisome.” These stressful realities weigh on Indrelie and group participants.

In recent days, Indrelie has had to take the occasional break from facilitating to tend to her own needs. She recognizes the need for skill-sharing and sustainability over what may be a lengthy period of crisis and uncertainty. To that end, Indrelie plans to host a workshop on April 2 for Reimagining Recovery community members who’d like to grow their skills in online group facilitation.

“We Try, at Least, to Keep Each Other Safe”

Prior to the pandemic, New York City activist Allilsa Fernandez was volunteering as a shelter organizer with the Sylvia Rivera Law Project, named for civil rights pioneer Sylvia Rivera, veteran of the 1969 Stonewall uprising and advocate for the rights of people of color and low-income queer, trans, and gender non-conforming people.

For Fernandez, who had recently been unhoused herself and experienced the shelters firsthand, this fight was personal. “The experience just woke me up. They don’t respect your [preferred gender] pronouns, and they don’t have resources, particularly for LGBTQ [people],” Fernandez told Mad in America.

As the seriousness of the pandemic in the U.S. became ever clearer, Fernandez had been active on social media, chronicling her concerns about unsafe and unsanitary conditions in the shelters.

And on March 13, Fernandez started a Facebook group called Mental Health Pandemic. Even—and especially—in a time of collective crisis, Fernandez has noticed the strengths in online communities she’s a part of. “It’s the resiliency that comes out of trauma,” Fernandez told Mad in America. “Especially with Black and Indigenous people of color, the system has never responded for them, never. We saw that with Hurricane Maria. We saw that with Hurricane Harvey. We saw that through Sandy. Continuously through history, Black and Indigenous people know, ‘you’re not cared for.’”

Fernandez is hosting online gatherings, movie nights, and mutual aid groups via Mental Health Pandemic, which has over 250 members as of this writing. The group includes many people from within Fernandez’ own networks in New York but also spans the country. Like Cypher and Indrelie’s groups, mutual aid discussions have largely centered around coping in a time of self-isolation.

In the coming days and weeks, Fernandez and other group members are hosting virtual “cafecitos” as well as Facebook Live events on subjects such as mental health during the pandemic in Latinx communities and updates from frontline health care workers.

Fernandez told Mad in America, “We try, at least, to keep each other safe, and to inspire each other, and uphold each other as best as we can. That’s what I’ve seen so far. Everybody’s willing to share and create that space.”

“Collectively Decolonizing our Society”

For Vesper Moore, director of the Zia Young Adult Access Center, a project of the Kiva Center of the Central Massachusetts Recovery Learning Community, moving to all online supports has not been a major adjustment, as the youth communities they are a part of and support have always been comfortable in virtual spaces.

But Moore does notice a slightly different quality to online mutual supports. “When you’re physically present with someone, there’s a support that can almost just be felt in the space. It’s not out of physical touch, not out of anything like that, but it’s a presence of someone being there. That’s a component that I know a lot of people feel like is missing.”

While Moore is seeing the same struggles with loneliness and distress as other facilitators of online spaces, they resist the notion that psychiatric survivors are inherently more fragile in a crisis. “I think that there’s this misconception that the public and the media like to put out about our fragility. Simultaneously, people don’t realize that a lot of us are people who are immunocompromised. A lot of us are people who have been forced into isolation against our will. A lot of us are people who have been through these things.”

Moore wants to emphasize the adaptability of people who have always been “at risk,” which continues to arise out of necessity. “As survivors, we have been figuring it out. I’ve seen a lot of people starting to say, ‘If this is going to be life right now, it is rough, but I’m not fragile and I’m going to find a way to move forward.’”

For Moore, the current crisis also represents an opportunity to raise consciousness globally about the history of the psychiatric survivor movement. Moore’s idea for the Psychiatric Survivor Webinar series came about through their direct observation that among certified peer specialists in Massachusetts and other places, there was a striking lack of awareness of the movement’s radical mutual-aid roots. “People say, ‘we come from the peer movement.’ Well, it’s not a movement. It’s a workforce,” Moore said. “And if you believe that it’s a movement, it’s easily controlled, because the system’s funding it.”

Moore sees a focus on survivorship and psychiatric survivor history as resistance to terms such as “peer” or “consumer” that have been co-opted by mental health systems, as well as a more inclusive banner than some of those identities. They told Mad in America, “If you’re a person who identifies more with madness, if you’re a disabled person, or if you are someone who identifies with their mental health diagnosis, this is a place where you can be and still identify with survivorship.”

For Moore, online communities intentionally reclaiming psychiatric survivors’ radical mutual aid roots is a much-needed source of strength and renewal in uncertain times. Moore said, “It’s about spreading these ideals around the world, and I think, collectively decolonizing our society.”

In addition to the mutual-aid projects detailed above, there is an ever-expanding number of projects run by survivors and allies. The Black Emotional and Mental Health Network (BEAM) has been running a series of peer-led workshops for communities of color and will offer a Black Mental Health and Healing Justice 101 training on April 4. And the Institute for the Development of Human Arts, a grassroots school for “transformative mental health,” recently held an online Transformative Mutual Aid Practices (T-MAPs) workshop geared toward the current crisis; the group will host a Community Open Mic on March 30.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post “Not Fragile”: Survivor-Led Mutual Aid Projects Flourish in a Time of Crisis appeared first on Mad In America.

WMRLC is a leading peer-run organization in the state of Massachusetts, operating a variety of supports across its region. The organization received its initial funding through the Department of Mental Health in 2007, opening the doors of its first Resource Centers in Holyoke and Pittsfield that same year.

The Greenfield and Springfield Resource Centers opened in 2008 and 2009, respectively. The organization has continued to improve access and capacity, with the addition of a Community Wellness Center in Springfield in 2010 and the acquisition of an independent space in Greenfield in 2011.

WMRLC’s website states that above all, these centers are “intended to offer a safe space within which our community can come together, heal, share, support, learn from and strengthen one another.”

By definition, peer support via the phone and in person has been the central offering at the Resource Centers. The centers host dozens of weekly, ongoing peer-to-peer support groups such as Hearing Voices, Alternatives to Suicide, LGBTQIA peer support, and many others.

In addition to peer supports, the Resource Centers have public computers, a lending library, and resource information. Springfield’s Bowen Center space includes gym equipment and access to a shower. The centers have offered teacher and video-led wellness and spirituality classes including yoga, Reiki, and community acupuncture.

The organization also manages a peer-support line, provides tenant support, and operates Afiya, a short-term respite house for adults in distress seeking 24-hour support. Sixty-five people are currently employed at WMRLC as full time, part-time, and per-diem workers.

As state and local governments issue stay-at-home orders, the WMRLC has sought to prioritize the needs of people who don’t have the luxury of doing so. Executive Director Sera Davidow told Mad in America, “All the recommendations, almost all the media coverage that we hear in general just ignores that there are vulnerable communities that don’t have the option to just stay home, either because their home doesn’t exist or their home is a really unsafe place for them to be.”

Davidow said that as many as 80 percent of people utilizing the Springfield and Holyoke centers are unhoused or underhoused, although it varies.

“The people being affected by this pandemic are those that are in some of the worst positions in society. These sort of programs are last-ditch efforts to help those who are too often looked down upon,” Springfield’s Bowen Center advocate Quinton Adams said.

Keeping the Doors Open in Uncertain Times

Amidst the public health imperative of social distancing, WMRLC has made a conscious decision to keep as many essential in-person functions going as possible, both at the Resource Centers and at its respite house, Afiya. The organization’s newsletter stated: “We have worked hard to be thoughtful and balance panic responses with taking this situation seriously and following guidelines for how best to respond to minimize the harms done.” The newsletter also reported on team members’ increased attention to hygiene guidelines and cleaning of frequently touched items and surfaces.

As the pandemic unfolds, each Resource Center is trying to remain responsive to the needs of people coming in the doors and to transparently communicate changes. Calvin Moen, the Greenfield community coordinator, explained, “It’s been a test of our adaptability, flexibility, and communications flow. It’s really been a challenge to keep everybody up to speed on what we’re thinking, what we’re doing, and how things are shifting.”

Workers at the RLC have been considering a range of options in uncertain times. “We may not be able to keep offering emotional supports in person,” Moen said. “Do we want to try to allow a few people at a time to hang out? Are we going to hand supplies out the door as people come by? Are we going to try not to have contact?”

With closures of libraries, restaurants, and other places unhoused people have traditionally used to charge their devices, use the restroom, and warm up, Resource Center workers are figuring out how best to respond. “If those places are not available anymore, is there a niche or a need that’s not being filled?” Moen asked. “What do we have that we can offer without being reckless? We are still figuring out the exact nuts and bolts of it.”

Alexander Araica, whose many roles at the RLC include interim community coordinator at the Bowen Resource Center in Springfield, echoed the challenge of having to make decisions to restrict in-person supports. “We have a task at hand, a responsibility to stem the spread. I have to weigh that against needs that aren’t being met. We have bathrooms, a shower, an ear. Some of those are human rights.”

WMRLC has listened closely to community feedback, easing up on restrictions when possible while continuing to follow public health guidelines. “Our community has definitely reminded us loud and clear how many people are in need and have nowhere else to go,” Davidow said of recent days.

Under the current policy, subject to change pending state requirements, workers are allowing up to eight people at a time into Holyoke and Springfield centers for up to two hours during regularly scheduled hours. Other changes include asking all people using the space to wash their hands upon arrival, and following six-foot social distancing guidelines.

“I appreciate working at a place that can adapt,” Araica said. “These are people who are just like me. They run towards the fire. They’re not paralyzed by fear. I can tell my team, ‘We can open up for these people. Someone needs to hear this suffering that is going on.’”

Beyond the Resource Centers, Davidow is already seeing how the crisis is affecting some of the community’s most vulnerable members supported by the RLC’s work. At the Rainville Building, designated for people who have been homeless, the organization provides peer support and tenancy preservation.

“Today, we found that the property management company had put a sign on the community room, locked it up tight, and posted another sign saying that they’re out until April sixth,” Davidow told Mad in America. “They aren’t even answering emails or phones. The building is full of elderly folks with complicated medical needs and people struggling with substances.”

In response, Davidow and community-supports coordinator Rafael Rodriguez put a note on every tenant’s door with a list of online supports, a fact sheet on the virus that includes information for drug users, and a letter saying how the RLC could be available and offer support including bringing needed supplies to help tenants navigate the current isolation.

Respite in a Time of Quarantine

COVID-19 has also challenged operations at Afiya, the organization’s peer-run respite house, and the only one in the state of Massachusetts. Emmanuel Henry, Afiya’s assistant director, told Mad in America: “The coronavirus has prompted us to adapt to the climate, to take a different approach on how we handle things.”

Afiya, which opened in 2012, is described on its website as a “short-term, 24-hour peer-supported environment” designed so that “each person can find the balance and support needed to turn what is so often referred to as a ‘crisis’ into a learning and growth opportunity.” Located in a home in a central, residential neighborhood in Northampton, Afiya is available to adults ages 18 and older experiencing emotional distress; stays at the respite house vary from one to seven days. Respites like Afiya are intended to help divert people from expensive, often re-traumatizing emergency room visits and psychiatric inpatient hospital stays and to connect them to available community resources.

So far Afiya’s policy has been to keep the respite open for as long as possible and to prioritize the needs of those “who truly have nowhere else to go, or who are under serious threat of force,” according to a recent newsletter.

Prior to the current crisis, team members had conducted initial conversations in person to determine if individuals were a good fit for a respite stay. These conversations have now been moved to the phone, and team members are asking more health-related questions. In other policy changes designed to minimize the risk of exposure, respite house participants are now being asked to refrain from having visitors, to limit comings and goings, and to follow social distancing requirements.

Currently, the nine workers employed at the respite have been able to keep it staffed around the clock. But Henry admits, “That’s not without its hoop-jumping. Everyone’s giving their one hundred percent.”

Henry worries about the people most likely to fall through the cracks in a pandemic. “Just because things are stopping, life is not stopping for people. If we can keep the doors open as pragmatically and healthfully as possible, I’m for it.”

Taking Peer Supports Online

In addition to providing material support to persons most impacted by the pandemic, the WMRLC has had to find a way to quickly take their peer-support groups online using the Zoom video conferencing platform. “At our peer respite and beyond, we often talk about turning ‘crisis’ into a learning opportunity, and that’s what we’re doing here,” Davidow wrote in a recent newsletter.

Lead trainer Cindy Marty Hadge, who is facilitating online peer-to-peer groups, said of the transition: “It’s been fast-moving. There’ve been bumps, but we’re figuring it out.”

In addition to moving their own peer-support groups online, WMRLC has also curated a partial list of online and phone supports offered by other peer-run organizations. “Some of our groups are bigger online because there’s a whole world of people that can access them,” Davidow explained.

Hadge has observed that the decreased availability of traditional services has led to an uptick in interest in the RLC’s online offerings. “In desperation, people are looking for any kind of help, reaching out to try something else that’s available. A therapy focus is often on ‘what’s wrong with you’ versus ‘we’re all in this together.’ People are thrilled to be able to share in a different way, to truly feel that they are not alone.”

“It’s been a blessing to meet even more people, not just across the U.S., but in other countries. It’s been interesting to hear how other countries are dealing with the virus, how they can get tested and we can’t,” said Hadge.

In addition to facilitating Hearing Voices groups online, Hadge is working with Hearing Voices Network USA (HVN-USA) board member Ed Herzog to develop an online course for friends and family of voice-hearers. As Hadge explained, in the current HVN family and friends group, resources and information are given out organically, with new participants being brought up to speed on HVN values as needed. “This course will give a foundation for a common language,” Hadge explained.

WMRLC team member Mike Cook is also helping to facilitate groups including general peer support, Alternatives to Suicide, and groups for people struggling with substances. The online groups have attracted national and even global interest, with folks participating from Singapore, Southern California, and Georgia, he told Mad in America.

Cook shared that the first thirty minutes of groups have generally focused on how the coronavirus is impacting people’s lives. Cook described “a range of emotions, including fear of how this could go in the future. People are feeling sad, cut off, feeling like they want to die, too.”

The groups often turn to discussing the value of creative expression during this time, as well as skill-sharing and skill-building. “If things take a turn for the worse, we talk about how we might have to rely on our skills,” Cook explained. “Gardening skills, leadership skills, and people share different ideas for protecting their families.”

For Cook, the connection remains intact, despite the initial awkwardness involved in shifting from the in-person to online format. “We see people’s faces. People are able to emote. The sense of community is still there. Even if we’re not able to leave our homes, it doesn’t mean we can’t have a community and people to relate to.”

“People are scared, but they’re strong, too, because they’re trying to maintain and get through it. I admire people’s strength,” Cook added.

There are also efforts underway to make online peer supports more linguistically accessible. WMRLC facilitators Araica and Rodriguez have begun facilitating two online groups in Spanish: a general peer support group, and an Alternatives to Suicide group.

Helping Organizations Shift to Virtual Peer Support

With some experience in the online peer-support space prior to the pandemic, WMRLC has been uniquely positioned not only to move their own in-person peer groups online, but also to help others make the shift as well.

WMRLC Director of Training Caroline Mazel-Carlton, with HVN-USA board member Jeannie Bass, started the world’s first HVN online peer-support group in 2017. The group was followed by a Hearing Voices group for friends and family that launched last year, facilitated by Hadge and David Adams.

HVN groups in Europe have all been conducted in person. But the sheer size of the United States, and the relatively small number of in-person groups, necessitated an online presence to help meet the growing demand for support, Mazel-Carton explained to Mad in America.

“Jeannie and I were really intimidated before we started the online group because it just hadn’t really been done before,” Mazel-Carlton said. “Neither of us were ‘tech people.’ We had to figure it out as we went.”

In response to the current crisis, Mazel-Carlton is now holding online workshops designed to help Hearing Voices Network and other group facilitators feel confident holding space for virtual peer-support groups. The workshops attend to practical matters like protecting online security and privacy and managing technical difficulties, as well as skills for facilitating groups where participants use a mixture of audio-only and video conferencing.

The first “Bring Your Support Group Online!” workshop, held on March 19, attracted over fifty participants, with many others unable to join due to space constraints. To help accommodate the demand, WMRLC is holding an identical workshop on March 24.

Mazel-Carlton wants peer-support group facilitators to know: “You can do this. It doesn’t matter if you spent years in a psych ward. It doesn’t matter what generation you are. We can figure this out. If you need support, we’ve learned a lot over the last three years. So whatever you’re navigating, we might have done it before.”

Mazel-Carlton adds a practical tip for those facilitating and participating in online support groups: “A good thing we can do for each other is to mute our mic when we’re not talking. It makes it easier to hear and to be heard, and there’s less that has to go over the Internet waves.”

Building Community and Connection Online, Creatively

In addition to moving its peer-support groups online, the WMRLC is experimenting with using different platforms to help the community stay connected, supported, and informed during a time of rapid flux. WMRLC assistant director Natan Cohen has taken the lead in starting a Discord channel called “WMass Social Un-Distancing.” Cohen explained to Mad in America that while the group is locally oriented, others are welcome to join or to learn more about how a similar channel might work for their communities.

Discord is an app that was created by the gaming community but is used by many other communities and has several advantages over more popular social media platforms like Facebook. “It is made more for live interaction than Facebook, which is forum-style and built around threads,” Cohen explained. “Discord has built-in voice and video calling features, which can be done one-to-one or in groups. This creates a different experience that is more like ‘hanging out’ than posting to a forum.” Discord channels also allow people to create sub-groups based on shared interests, which can be moderated by community members.

Cohen created a tutorial to orient users to the various features of the app:

Cohen’s lifelong experience as a community manager in online spaces has illuminated some possibilities in these times. “Even though this crisis is awful, there is an opportunity when people are needing connection. They may have more patience and time to learn about a new platform like Discord.” Cohen added, “Some of these online groups will keep going after this is all over.”

Cohen emphasized the value of learning from those who have long experienced social isolation for many reasons, even prior to this current crisis. “There are so many people who are isolated because of disabilities, poverty, and other matters, and those people have a lot of wisdom to offer.”

In addition to creating the Discord channel, Cohen is curating a selection of online wellness offerings for the WMRLC community and has created an application for holistic practitioners who wish to be included. “Our community is losing out on acupuncture, mindfulness, yoga, and kickboxing,” Cohen said. “I noticed through my own social media feeds that many people are offering free classes right now. I thought it would be good to honor them for their time and commitment, and to curate some high-quality classes that we can post.”

Practicing Collective Care in Unprecedented Times

Davidow underscores that as the crisis continues to unfold, WMRLC is dedicated to providing every incentive for workers to take care of themselves and stay healthy. “People need to stay home, either because they are particularly vulnerable, or because they feel like they might have been exposed to someone who’s sick. We have a lot of that going on,” Davidow said. “In most instances, we’re not even asking them to use their paid leave.”

“If someone is working online and doesn’t make their base hours, we’ll credit them the rest,” Davidow added. “We’re really trying to be generous in that way, so people don’t feel like they have to make these choices based on the ability to survive financially.”

WMRLC employees are encouraged to avail themselves of the online peer-to-peer support groups on offer. And Davidow shared with Mad in America that the organization has added two weekly Zoom groups just for employees to talk about both work-related and personal matters.

“We’re also trying to leave a lot of space for people to create things,” Davidow added. “It’s not just one person who’s driving the question of ‘what should we be doing?’ A lot of people have input into that. In a time when lots of control has been lost, for people who want to create things, having that to focus on is important.”

WMRLC intends to persevere to every extent possible as a community resource and an alternative to force and coercion. “If we’re saying that we’re an alternative to the hospital, but then something big happens in our community and we say, ‘Nope, we’re out of here,’ it sends a message of ‘No, we’re not an essential support,’ a message I don’t want to send if we don’t have to, because it’s clearly not true,” Davidow said.

The post Mutual Support in an Age of Social Distancing appeared first on Mad In America.

Stastny has frequently collaborated with psychiatric survivors in conducting research and writing projects, including the book and major exhibit at the New York State Museum, The Lives They Left Behind: Suitcases from a State Hospital Attic (together with Darby Penney) and the edited volume Alternatives Beyond Psychiatry (with Peter Lehmann). He has directed several documentary films.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Leah Harris: I got to see you recently at a meeting with Dainius Purās, the Special Rapporteur on the right to health at the United Nations. Maybe you could start us off with your current work in the sphere of human rights and work with the UN?

Peter Stastny: Your listeners who have followed the reports that [Purās] has been producing over the last three to four years must have noticed something pretty radical coming out of the United Nations. And we at INTAR, an organization that I co-founded about sixteen years ago, provided them with lot of input and material. The Special Rapporteur and his collaborator, Julie Hannah, have been to INTAR’s conference a number of times, and we’ve managed to connect them with a lot of amazing activists around the world. That’s been a really interesting and important connection that is continuing.

Harris: After Purās’ mandate is over, how can that work be kept going, not knowing who the next Special Rapporteur will be, and if that individual will be open to advancing radical ideas in the way that [Purās] and his team have?

Stastny: We need to build a stronger worldwide network of people who are in support of the things that Purās and many of us have been advocating for: human rights, no coercion, and helpful alternatives beyond and outside of psychiatry. Mad in America has done a lot of work in building that movement and in providing more information. But I think many people need to actively come together and work on the policy implications, such as how governments can influence the services that are being provided in their countries, and not leave it up to psychiatry to transform itself.

Harris: What do you see as the core values connected to human rights that activists can organize around globally, even if the particular situations and circumstances in their countries with the mental health system may differ?

Stastny: Well, there’s two different things. One is when people first seek help from the mental health system, they’re usually in some form of a crisis. This could be a number of different things going on, severe or less severe, suicidal, altered states–experiences that that put people at risk to not only be psychiatrized or institutionalized, but also to run into a lot of problems in society. So I personally like to focus on these moments of crisis and turn them into opportunities rather than what often happens, which is the beginning of a career as a mental patient. So for me, that’s a very important focus.

Then there are all these many thousands and millions of other people who’ve already been through the system and who either have made it out reasonably well, or are still languishing and either institutionalized or “in the community,” but living poorly or homeless. Of course, we need to look out for those people. Too many of them have had long exposures to psychtropic drugs, which have harmed them more than they’ve helped.

So there’s a lot of work that needs to be done in these two areas: with people who are coming into or being exposed to mental health [treatment] for the first time, and then with people who have a long history [of receiving treatment].

Of course people are now referred to — and many people refer to themselves — as individuals with psychosocial disabilities, and that is the language that’s being used internationally. So the disability rights rights movement has been able to start talking about mental health much more in the ten years since the United Nations adopted the Convention on the Rights of Persons with Disabilities (CRPD), but there’s a lot of work that needs to be done. We know a lot, but we’ve not been able to apply it.

I feel my area is more making sure that that support can be extended to people in a rights conscious or rights preserving way, but it also has to be helpful, effective, and it has to make sure that people do not get harmed more by the help that they’re getting. So when you’re talking about how to apply [the CRPD], the West in some ways is much more difficult to transform. In essence, the more you are dealing with entrenched huge, powerful institutions like hospital conglomerates, and city hospitals that are relying on inpatient work for most of their revenue, then you have a big problem. In some ways, in countries of the Global South, where psychiatry has not spread and has not been funded to that extent, we have better opportunities to begin or to implement things that are from the start rights conscious and effective.

Harris: I’m wondering if you can talk a little bit about how you first came to do the work that you do today as a critical psychiatrist and a human rights activist.

Stastny: I was an advocate against psychiatry before I ever became a psychiatrist. I was a medical student in Austria when I met psychiatrists from Italy who were transforming their mental health system in spades. In the late seventies, they were saying, ‘We’re going to close down all the institutions where we’ve sent people in Italy for the last 150 years, and we’re going to replace them with community-based mental health services.” At that time, these people were pretty radical, and they were called “Democratic Psychiatry.” They prompted us in Austria to build a sister organization, and we started to demonstrate against our local institution, which was called the Steinhof. It’s pretty infamous and also some of the most spectacular Jugendstil (Art Nouveau) architecture in the world. That’s where I began protesting against locking people up in institutions.

Throughout medical school, I had no intention of becoming a psychiatrist. I was interested in cardiology. I worked in a coronary care unit, where people came in with heart attacks and life-threatening conditions. I was a young resident, and I started to see that medicine had become a very mechanized and mechanical technocratic enterprise. Of course we could save lives, but no one really paid attention to how the people were doing. So I became interested in the perspective of the people who were going through these things, and that’s how my interest in mental health started.

Then I worked with kids in a psychosomatic unit at the hospital. One of my first experiences with psychiatriatry was when we were admitting young people who had attempted suicide. In order to save them from going to the Steinhof institution, where they were first treated for overdoses, we had this deal where they could send young people under eighteen to this pediatric ward, and I started to see them. Several people could have easily ended up in Steinhof. We treated them with talk therapy and family therapy, and had amazing results. For many years I was in touch with a young woman who thanked me for saving her life and for saving her from going into the mental institution.

Then I came to the United States and decided to do my psychiatric training here in New York, in the Bronx, at Albert Einstein College of Medicine, because the residency training program was run by a man named Joel Kovel, who was a Marxist psychoanalyst. There was a rather left-wing group of faculty at the Albert Einstein College of Medicine, which attracted me. I worked with them for a number of years. We even tried at a certain point to start a storefront in the South Bronx that used Marxist psychoanalytic principles, which never actually happened.

Then I went to work in a place called Bronx State Hospital. I met a lot of patients who had gotten stuck there. I started to engage with people, to work on an open ward. We became more partners in what we were doing, than doctors and patients. That was a very transformative period of time.

The approach at that time could be called “social psychiatry.” There were a number of people in the faculty that were supportive of that idea, but they weren’t radical; they were not against institutions or hospitals. No one was talking about human rights then. But it was very clear to me that I didn’t want to lock people up so that they could get help. I didn’t want to work in places where that’s being done.

So I started this kind of “laissez-faire” approach where we didn’t do a lot of therapy; we were available to people, and the doors were open. I also realized, along with a number of other people, that the power of the peer group is something that has been neglected forever in psychiatry. Yes, there was talk about “therapeutic communities,” but those were very regimented and staff-led. I was more interested in supporting people to become engaged with each other, to start things for themselves.

I was very interested in, for example, an approach called the Fairweather Lodge, which was founded in the 1960s by a man named George Fairweather, who said that people can manage their lives autonomously as groups, if they learned certain strategies and certain methods that would sustain them both economically and health-wise in the community. So we kind of replicated that a little bit. And in doing that, we also started to talk to people about their lives. That’s what really transformed my outlook in the late eighties, when people started to tell me how they could make much more of a difference in their own life when they could see themselves as helpful to others.

I thought that it was a form of empowerment that counteracted everything that was happening in institutions and with medications. People who were supposed to be “helped” in those institutions were taught to be good patients, to take their medication, to go to therapy, to be quiet and docile, and maybe to do some menial work at best. But we started to see that when people could do meaningful things for others, they transformed.

I remember a woman who was there about 20 years. Her name was Rosita. I remember she was kind of helpful to the staff. She would get cigarettes and coffee for them. One of the patients came up with an idea to deliver food to homeless people in the city. Rosita became transformed; she made sandwiches and she went to deliver them with the rest of the people on the Bowery. It was so obvious that something not only psychological, but maybe even physiological, happened. I thought that the medications that we’re giving people interfered with their ability to take charge of their lives, and the ability to help people counteracted that.

Within a couple of years, it led us to some huge changes, not only locally but nationally because we part of a national movement. I went from being just a regular attending on an open back ward, to being part of a national project on “consumer-operated businesses.” And we were leaping ahead. We started with peer specialists; people said, “I want to help others.” We said, “well, if you’re going to help people, you could do it two ways. You could volunteer, or you could get paid for it.” People obviously wanted to get paid. So we created the path, the position, of peer specialist at that hospital. We were the first.

I recently wrote a piece with Darby Penney that looks at a lot of the pitfalls that happened with that, 30 years later. But back then, it was a huge step forward. People came out of the woodwork and said, “I want to be a peer specialist. I want to start a business. I want to start an organization.”

We worked with an attorney named Mimi Kravitz, who started an organization to provide technical assistance to people wanting to start their own businesses. This was in 1990, and the organization existed for 10 years, and got a lot of funding. I think we were pretty far ahead, and then things went a little sour later on.

Harris: Peter, I’m wondering if you can talk about the Willard Suitcases Project and how you got involved in it.

Stastny: The Suitcases Project was about unearthing the actual stories of the people that ended up in Willard Psychiatric Center, in upstate New York, who spent the rest of their lives there for the most part, and died there; to find out what their lives were like, outside of their medical records, outside of what people wrote about them.

Of course, when you find 400 suitcases in the attic of a mental institution, you are intrigued. Half of them were full, and you are seeing lives in suitcases that were lost. I don’t want to analogize the hospital with the Holocaust, but I come from that background in my family. And suitcases were very symbolic, when people had to leave things behind, and then were killed.

In this case, I don’t want to say that they were killed, but they were shunted away from society and not given a chance to return. So the symbolism of the lost suitcases was very powerful. And so we tried to make it into a story, where we could contrast what we could piece together from the suitcases with what was in the medical records. It was really poignant and sad to unearth those stories. I learned a lot; how people survive in spite of everything.

There was a guy whose suitcase we picked — kind of accidentally — who turned out to be the the gravedigger of Willard Psychiatric Center. For 50 years, he dug graves for his fellow patients. I’m still shivering when I remember this story. We couldn’t look in depth into every person’s suitcase we found. We had to pick. We picked a suitcase where there were very few things: a belt, a razor, a pair of shoes, a couple of other personal items, mostly items that were deemed unsafe on the ward. And then we discovered that he was the gravedigger of Willard.

Harris: There’s so much about the Willard Suitcases Project that’s significant — it puts a human face on people who are locked away, who have been feared, marginalized, and even demonized in our society at different points in time.

Stastny: These became closed worlds. Willard was a place where the staff and the patients cohabited in the same space, and depended on each other. Fifty to sixty percent of the patients were working. It became an environment of its own; the rest of the world didn’t know much about it at all, and people disappeared.

The people who were suffering throughout their stay in ways that were obvious, people who couldn’t fall into the role of “worker-patients,” all had serious traumas, losses in their lives that were never recognized. Of course, no one was receiving any kind of talk therapy. People were misjudged, misheard, discredited, and became condemned in a way. One young woman had been a nun and kept saying, “I’m looking for dispensation.” That’s when you’re feel that you’ve sinned and you don’t deserve to be a nun anymore. By the time she got to the hospital, everybody was saying that the whole thing was a delusion. Her life was completely thrown away. She languished in a terrible fashion for the rest of her life.

Harris: Peter, could you talk about your work as a filmmaker, and how that connects with amplifying the histories and the stories of people who may not otherwise be heard or known?

Stastny: The first films I made were all around mental health, in order to bring people and their activism to light. So the first film I made was about activists, for activists– two in Europe, and two in America. And then we made a film in a children’s psychiatric hospital, where the kids acted out their own stories, and we turned it into an experimental film. I wanted to break the walls by bringing out the stories from within, that were usually lost, or ended up in the charts of the patients in these institutions.

And of course there was a movement beginning in the 1980s that was suddenly very promising. The Italians, who were radical in the sixties and seventies, were all psychiatrists. When you say the movement in the United States was radical in the eighties, they were all ex-mental patients. I participated in that transition, and then I became allied with people who’ve been through the system. This is how I see myself now, for all these years. My most important connections have been to people who’ve been through the system and have turned around their lives around in order to make a difference personally, politically.

Harris: What advice do you have for practitioners who like yourself, who may be at odds with the prevailing values or practices of mental health and psychiatry?

Stastny: I think we’re actually in a time when young psychiatrists have a lot of trouble with the profession. Many people who go to medical school don’t want to be psychiatrists. They feel it’s a dying field, because of the misguided and problematic history, including recent history with medications. So there’s a lot of people who enter the field and who realize, “Wow, this is not exactly what I bargained for. I really don’t think that I can help people in this way.” I feel there are opportunities. We’re doing a project now called Reimagining Psychiatry. It’s too early to have much to share, but the gist of it is to the collect the stories, experiences, and narratives of psychiatrists who have done transformative work in their lives, of young psychiatrists who are facing these struggles. I think that will become interesting and relevant.

There are people who say, “Psychiatry has to just go out of business. It can be split into social work, psychology, and some form of neurology. Why do we need psychiatry?”

That’s possible; it could happen. Or, psychiatrists can become transformative people in their communities and in the world, and make things different. But psychiatrists are not that important except when they’re in power; when psychiatrists run things, it becomes problematic.

The biggest hurdle is that psychiatrists have the power to lock people up and to medicate them against their will. I think they should relinquish that power. They should refuse to accept it. People should refuse to put their signature on documents that cause people to be locked up. That would be my hope for the near future.

I was the acting clinical director of Bronx Psychiatric Center for a year. And I said to my boss, the director, “I am not going to sign any orders for medication over objection.” And she said to me, “well, that means you’ve got to come up with something else.” I made that my mission for each and every person whose order I refused to sign. I went and tried to do consultations and met the people, and tried to do what I could. Of course it wasn’t enough, because people were trapped in the system, in the wards where there were very few alternatives for them. I feel institutions like that should not exist. Ninety percent of the hospitals should be closed, and ten percent should be voluntary. And most psychiatrists should be working in communities along with others who are truly out to help people, and not to hurt them.

Harris: So it sounds like you’re still optimistic in a way — or at least cautiously optimistic — that psychiatry can transform into a liberatory force.

Stastny: I know it’s possible, but I’m not sure that it’s likely. You know, we’re again at a time here in this country in the United States where people are screaming for psychiatry to solve problems of gun violence, homelessness–which obviously are huge, complex societal problems. And when psychiatry gets called to do that, then they come up with solutions that are not only false, but harmful — locking more people up, forcing people to take intramuscular injections or medications. Psychiatrists can and should take a stance and say, “this could be different.” But they would need to arm themselves with the conviction that people can be helped without the use of force.

I remain busy trying to provide people with the knowledge and the information that we already have: that the vast majority of people can be helped without the use of force. To make decisions for the entire system based on some exceptional situations where somebody may have to involve the legal system? That’s what’s been wrong with psychiatry for 200 years. Some psychiatrists noticed that early on, when they talked against restraints, and talked against locking people up against their will.

The movement against coercion is gaining strength internationally, but it has to be armed and supplied with information and practical know-how, to show how people can get help without force, and by preserving human rights. We can do that in conjunction with the thousands and thousands of survivors who’ve come out as advocates or peer supporters, as well as other professionals. I hope it’s going to get stronger; I think we can achieve something.

Harris: Are there any other projects or initiatives that you’re involved in that you’d like to let the listeners know about?

Stastny: There’s a group of us working to have a conference in New York on rights-based crisis supports. We’ve learned a lot in the last ten years about that in New York, and elsewhere in this country. Crisis respites have turned into viable alternatives that the system is looking favorably on, which is both interesting and a little troublesome. But peer-run respite and Open Dialogue are being talked about. Soteria should be re-introduced as a very important alternative for people who are going through extreme emotional transformations and changes.

At the UN meeting you mentioned at the beginning of our conversation, there were so many people, activists who are doing important work in the city, and in this country. That’s where the hope lies. We have to bring in more people who are stuck in the mainstream and not really knowing what to do. That’s a big mission. I’m not sure how it’s going to get accomplished, but that should be a goal: to teach and enlighten people who are struggling in the fields of psychology, social work and psychiatry, to figure out how can we do things better. We shouldn’t really talk about “alternatives.” We know a lot about what helps people, and that knowledge should be the mainstream.

****

MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post “Reimagining Psychiatry:” An Interview with Peter Stastny appeared first on Mad In America.

The most-widely cited research conducted by Swanson et al found that only 4% of violent behavior towards others can reasonably be attributed to SMI; in other words, 96% of American violence is due to factors unrelated to diagnosis.

A 2014 study in the American Journal of Public Health analyzed a random sample of 25% of news stories on SMI and gun violence published in the national and regional news from 1997 to 2012. During this time period, the study found that “‘dangerous people’ with SMI were more likely than ‘dangerous weapons’ to be mentioned as a cause of gun violence.”

A subsequent study published in Health Affairs last year found that public associations of schizophrenia with violence rose “significantly” from 1996 to 2018. By 2018, over 60% of survey respondents associated schizophrenia with dangerousness, and as high as 59% supported coercive treatment.

The study’s authors concluded: “These findings reflect political discourse, not scientific data, and could lead to policies that would be ineffective and misdirect the search for the underlying roots of violence.”

Questioning the Dominant Narrative 

On February 3, the Coalition for Smart Safety and the Consortium of Citizens with Disabilities (CCD) co-organized back-to-back briefings in the House and Senate to provide background and education about the pervasive myth linking gun violence and mental illness.

Comprised of leading local, state, and national disability rights, civil rights, education, mental health, and privacy organizations, the Coalition for Smart Safety formed last year “with the shared goal of affirming that mental health disabilities are not predictors of gun violence and should not be the focus of gun violence prevention proposals.” CCD is the largest coalition of national organizations “working together to advocate for federal public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.”

Despite the nation’s laser focus early last week on the final days of the impeachment trial, both briefing rooms were packed with staffers and advocates. On the House side, the briefing was presented in conjunction with Reps. Grace Napolitano (D-Calif), and Jim Langevin (D-RI), both members of the House Gun Violence Prevention Task Force. The House briefing was livestreamed by the National Parent-Teacher Association.

An identical briefing followed on the Senate side, presented in conjunction with the offices of Senators Richard Blumenthal (D-CT), and Bob Casey (D-PA).

Mental Illness Low On List of Causal Factors

Jonathan Metzl, author, psychiatrist, and director of the Center for Medicine, Health, and Society at Vanderbilt University, provided an overview of the research evidence on gun violence and mental illness. Metzl, who is also research director of The Safe Tennessee Project, a nonpartisan gun safety organization, and a frequent media commentator on mass shootings, said that in the aftermath of the Sandy Hook tragedy that “every time there would be a mass shooting, there would be some politician who would basically say, ‘This isn’t a gun problem. This is a mental illness problem,’ followed by a seemingly endless slew of media saying, ‘This disorder caused the mass shooting.’ I kept getting asked the question, ‘Does mental illness cause mass shootings?'”

Metzl is not unsympathetic to this gut reaction. “The aftermath of a period of mass shooting is a moment of terror, right? This idea of creating some boundary between ‘us and them,’ some kind of lingua franca that ‘only a crazy person would commit an act like that,’ is an understandable response.” He added that with a number of mass shooters, there were histories of psychiatric symptoms, adding to the pervasiveness of the myth.

However, as Metzl began to dig deeper into the data, he found that prevailing stereotypes and reality simply did not match up. “I started to list out the many factors that went into a mass shooting,” he said. “And the factors were things like the availability of firearms, substance use, recent firing from a job, trauma, things like that. Mental illness is often number 15 or 20 on the list. And so it was increasingly problematic, I thought, that mental illness was being isolated as being this one causal factor.”

Metzl’s research went even further to reveal the opposite of the “violent madman” stereotype so ingrained in public consciousness. “There was a lot of data that I thought was convincing, which was showing that people with diagnosed mental illness were actually less likely to shoot somebody and less likely to commit mass shootings,” he said.

This is partly because “negative symptoms” that can lead to a diagnosis, such as low energy, low mood, and disorganization, were actually protective factors against committing violence, because people having these experiences were less likely to be out in public, Metzl explained.

“Here was another example of the stigmatization being really at odds with what was happening in the real world,” he added.

Metzl said that psychiatrists are likely to be “poor predictors” of whether an individual will become violent, at least in part because “the population of patients that psychiatrists are seeing are less likely than a more dangerous group—the sane—to go shoot somebody else.”

For Metzl, the concern is that when people make the erroneous link between mental illness and gun violence, they are less likely to pursue solutions that address the true root causes of gun violence. Instead, they are more likely to focus on getting better at predicting who will be the next “ticking time bomb,” he said.

While Metzl did not mention it by name in his remarks, last year just such a proposal made headlines. Bob Wright, head of the Suzanne Wright Foundation and a friend of President Trump, floated a proposal to the White House called Stopping Aberrant Fatal Events by Helping Overcome Mental Extremes (SAFEHOME). According to this proposal, SAFEHOME would be part of a new agency, the Health Advanced Research Projects Agency (HARPA), modeled after DARPA, or the Defense Advanced Research Projects Agency.

With an estimated price tag of $40-60 billion, SAFEHOME is supposed to utilize tracking software to detect signs of “mental health” concerns that could portend mass shootings. But according to Jessica Baron, a tech ethicist who blogged about SAFEHOME as “pseudoscience:” “just because we have AI and machine learning that can process massive amounts of behavioral data doesn’t mean it actually works.”

Metzl concluded by stating that we as a society need to be asking much broader cultural questions about gun violence, such as “Why do we need so many guns in the first place? Why do people mistrust each other?” and “What do guns mean to the population of gun owners?”

Since the year 2013, there have been more guns than people in America, making the country an outlier among all the world’s nations.

A Societal Belief That Is Just “Completely Wrong”

Josh Horwitz, director of the Coalition to Stop Gun Violence (CSGV) which develops and advocates for evidence-based solutions to reduce gun injury and death, admitted that he had once believed in the link between mental illness diagnosis and mass shootings. After bringing together experts who showed him the data, he now feels that the idea of mental illness causing mass shootings or violence in general is “just completely wrong,” adding: “I’ve had to change my thinking about it after about 23 years of doing this.”

Horwitz explained that gun violence is complex and multifactorial, encompassing interpersonal and intimate partner violence, suicide, police violence, and accidental deaths. Therefore, there is no one cure. As far as policymaking at his organization, Horwitz no longer gives the mental illness link any credence. “I don’t spend any time on that,” he said.

From an epidemiological perspective, Horwitz noted that if there are nearly 45 million people in America diagnosed with a mental illness in any given year, the likelihood that any one person in this group would use a gun to commit a homicide is extremely small.

“Thinking about screening 45 million people for things that they are not a risk for is a gigantic waste of resources,” Horwitz said. “When we think about stopping gun violence, focusing on people who are less likely to be violent makes zero sense, and it’s also incredibly stigmatizing.”

“What we need to do is focus on the real risks of gun violence,” he added. Known risk factors unrelated to psychiatric diagnosis or disability include alcohol or drug misuse; a prior history of violence; being male and young; and a recent relational, social, work or financial loss.

While alcohol and street drugs are commonly associated with an increased risk of committing gun violence, psychiatric medications were not mentioned at the briefing and are rarely included in media or academic discussions of mass shootings. Yet psychiatric drugs, most notably antidepressants, have long been associated with an increased risk of violence in a percentage of individuals, with several mass shooters having taken such drugs. As early as post-Columbine in 1999, psychiatrist Peter Breggin warned about a possible connection, as one of the shooters was taking the antidepressant Luvox at the time.

Author and sociologist Anthony Ryan Hatch, who wrote about psychiatric drugs and interpersonal violence in his book Silent Cells: The Secret Drugging of Captive America, told Mad in America last month: “I think that more research needs to be done to try to figure this out. Because this combination of widespread societal psychotropic drug use and the mass availability of weapons is creating a situation where far too many of us are dying and being injured. Although it’s very difficult for me to say that A causes B.”

While Horwitz acknowledges that there is no singular cure for gun violence, his organization has been focused on a specific set of policy reforms: “extreme risk protective orders” (ERPOs), also known as “red flag laws” or “gun violence restraining orders (GVROs). As of this writing, such laws have been passed in 17 states and the District of Columbia.

ERPOs have been implemented in a variety of ways. Some laws discriminate on the basis of psychiatric disability and diagnosis, and some focus only on non diagnosis-specific risk factors. New York’s 2013 SAFE Act is one of the earlier and more controversial ERPO laws, as it requires mental health professionals to report on individuals who are “likely to engage in conduct that would result in serious harm to self or others, regardless of whether a legal firearm is implicated,” even though mental health professionals are typically poor predictors of violence.

“Think of a domestic violence restraining order, except it’s available to any family member,” Horwitz explained. “That family member can say ‘my loved one’s at risk’ because of evidence-based risk factors of violence: past acts of violence, threats of violence, drug or alcohol abuse, impulsive anger.” He added, “The studies are pointing in the right direction that these laws that are focused on the actual risk factors, rather than mental illness, are saving lives.”

“We have to stay focused on the facts.”

Kelly Vaillancourt, director of policy and advocacy with the National Association of School Psychologists, shared her concerns about mental health services in schools being touted as the solution for school shootings. “If we’re really going to be serious about tackling the issue of gun violence, we have to stay focused on facts,” she said. “To conclude that a child or an adolescent who is exhibiting symptoms of depression or anxiety is more predisposed to commit an act of violence does nothing but perpetuate an incorrect stereotype.”

“What we absolutely have to move away from is the notion that we provide school mental health services because kids with disabilities or kids who have a mental illness are violent,” Vaillancourt said.

Vaillancourt mentioned her organization’s concerns about policies that profile students on the basis of disability or diagnosis. “It is completely inappropriate for schools to be using any kind of profile to say, ‘Oh, you’re a student with a disability, therefore you must need these types of services.’ Or, ‘you’re a student with a mental illness. Therefore, we automatically assume that you pose a threat of violence.’”

One example, not specifically referred to by Vaillancourt, is the “school safety” policy implemented in Florida in the wake of the Parkland shooting, which sparked controversy over a requirement that students disclose past referrals to mental health services when registering for public schools. Writing about this law for the Center for American Progress (CAP), Azza Altiraifi and Valerie Novack warned: “This policy will disproportionately harm marginalized students, especially those who may exhibit aberrational behaviors as a result of a disability but who pose no actual threat.”

Vaillancourt said that her organization is hearing about such discriminatory policies being enacted around the U.S. “I strongly encourage those of you that are in communities where you’re hearing this is happening to do everything you can to stop it. Because that is not how we should be addressing school mental health.”

The final speaker was William Kellibrew, director of the Office of Youth and Trauma Services with the Baltimore City Health Department, which has helped to train thousands of city employees, community leaders, organizations in trauma-informed approaches.

Kellibrew shared his personal experience as a survivor of a gun violence tragedy that claimed his mother and brother. “It shaped the rest of my life,” he said. He spoke of being misunderstood by teachers and bullied by other students for staring out the window and for other behaviors he developed in the wake of the traumatic events.

Searching for news reports of his family tragedy a decade after the fact, what struck Kellibrew was a report in the Washington Post that described him as having witnessed the shooting but as being “unhurt.” Kellibrew said, “It actually crushed me 10 years later to know that that was the report about my experience. I was far from ‘unhurt.’ I was devastated.”

Kellibrew has learned through his life and work that “healing and recovery are possible.” He emphasized that “managing and struggling with mental health challenges is not a death sentence, or something that we should be afraid of. Nor should it prohibit us from living our best lives. What prohibits us from living our best lives is when we lack the support, and we’re attacked with labeling and stigma about who we are.”

He concluded that for young people who have survived traumatic events, “getting support as fast as we can to go ‘upstream’ and address some of the challenges is important, but (surviving a traumatic event) certainly isn’t a predictor of violence. I’m sitting right here with you.”

Kellibrew added: “I’m just glad to be part of a framework that says that these things aren’t connected in the way that people are connecting them.”

Debunking the Master Narrative

During the panel discussion, Jonathan Metzl mentioned that as someone who often engages with the media as a commentator, he has begun to notice some improvement in how mass shootings have been reported over the last decade. “I remember when I first started this, I would get asked questions like ‘What’s the diagnosis of the shooter?'” he said. “Another one I remember was: ‘Is Asperger’s linked to a higher risk of mass shooting?’ I do think we’ve gotten much more nuanced about this as a society.”

Metzl referred to the racialized dimension of the media and public rhetoric around mass shootings, which also has gotten more attention in recent years. “There’s a politics to which kinds of mass shootings get called ‘mass shootings caused by mental illness,’ and which ones get dismissed as ‘gang-related’ or ‘drive bys,’ (which is) just kind of an easy shorthand for ‘urban violence.'”

Discussing the media stereotype of the mass shooter as a “white mentally ill loner,” he explained how it “plays into all of these kinds of historical stereotypes about whiteness and intellect and factors like that. And it leads to calls to stop these kinds of shootings. But particularly when the victims are from communities of color, it never gets called ‘mental illness.’ It’s very quick shorthand for ‘there’s nothing we can do about it because it’s not a disorder of the brain, it’s a disorder of the neighborhood, it’s a disorder of the culture,’ or things like that.”

Metzl added, “There’s a long history of what gets called ‘mental illness’ being divided along racial lines.”

He also noted that a narrow focus on changing the media narrative may miss another important aspect of this issue. “The media is also reporting on gun laws. So I think part of the issue is that it’s not just enough to tell the media to do a particular thing. It’s actually linked to pushing for more responsible gun laws.”

He added, “I think that in a way, the media here sometimes deflect from the judiciary here, and what kinds of laws are being implemented.”

The latest Federal legislation to link SMI and violence is S. 2690, Sen. John Cornyn’s (R-TX) Restoring, Enhancing, Securing, and Promoting Our Nation’s Safety Efforts (RESPONSE) Act of 2019. The RESPONSE Act was introduced into Congress last fall following two back-to-back mass shootings in Cornyn’s home state of Texas last August. Cornyn’s legislation focuses on access to mental health treatment, including involuntary treatment; increased surveillance of America’s schoolchildren; and greater collaboration between mental health and law enforcement authorities. The bill currently has seven Republican co-sponsors.

The RESPONSE Act is similar to former Rep. Tim Murphy’s Helping Families in Mental Health Crisis Act, bipartisan mental health legislation introduced in 2013 following the Sandy Hook tragedy. Until Murphy resigned from Congress in 2017, the Republican Congressman and psychologist from Pittsburgh appeared in the press after every mass shooting, blaming people with SMI for gun violence. Murphy currently serves on the board of directors of the Schizophrenia and Related Disorders Alliance of America (SARDAA).

Maria Town, President and CEO of the American Association of People with Disabilities (AAPD) served as the moderator for both briefings. “We need to make sure we’re actually centering the voices of people with psychiatric disabilities in these conversations,” she said. “That speaks to making sure we’re telling the whole story.”

Town added, “All too often, you hear from everyone else but people with psychiatric disabilities.”

Correction: The original version of this article stated that the briefing was also held in conjunction with Senator Patty Murray’s office, but that was in error.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post Capitol Hill Briefings Debunk Myth Linking Gun Violence to Mental Illness appeared first on Mad In America.

Sanders’ ‘disability rights as civil rights’ plan is distinctive in its explicit inclusion of people with psychiatric disabilities and diagnoses, an orientation that runs counter to prevailing policy discourse in the U.S. “Sanders’ plan is particularly notable for how it addresses mental health,” Jennifer Mathis, deputy legal director and director of policy and legal advocacy at the Judge David L. Bazelon Center for Mental Health Law, told Mad in America. 

Mathis, who is acknowledged as a policy advisor on the Sanders plan, added, “The focus on community integration, inclusion, autonomy and independence, the use of voluntary services, and the commitment to respecting privacy rights, stands in marked contrast to how most candidates have approached mental health — focusing solely on ‘access to treatment’ and sometimes explicitly calling for expansion of institutionalization and force and reduction of privacy rights.”

Such anti-civil rights policy trends ramped up at the Federal level in 2013, when former Congressman Tim Murphy (R-PA), who perpetuated the false link between gun violence and psychiatric diagnosis, introduced the Helping Families in Mental Health Crisis Act. The bill received bipartisan support, and several key provisions were folded into the 21st Century Cures Act signed into law by President Barack Obama in 2016.

Every person with a disability deserves the right to live in their community and have the support they need to thrive.

This is an issue of fundamental civil rights, and we will not wait to advance disability rights.

Read our plan here: https://t.co/CfXu3ShX4H

— Bernie Sanders (@BernieSanders) January 31, 2020

Current presidential candidates, including Pete Buttigieg (D) and Amy Klobuchar (D-Minn), have endorsed policy positions favoring the expansion of institutionalization via repealing of the Institutions of Mental Disease (IMD) Exclusion, a statute enacted at the start of the Medicaid program to disincentivize states from over-relying on costly and dehumanizing institutions. While Elizabeth Warren does not mention IMD Exclusion repeal in her disability plan, her disability team has not yet responded to a request to clarify her position.

By far the most controversial mental health plan belonged to Sen. Kamala Harris (D-CA), issued just days before she dropped out of the presidential race last December. It not only called for the repeal of the IMD Exclusion but also pushed to expand involuntary outpatient commitment programs — euphemistically referred to as Assisted Outpatient Treatment (AOT) — and the opening of segregated “psychiatric campuses.” The Harris plan was roundly condemned by the disability community for its coercive, punitive proposals.

In contrast, the Sanders plan unapologetically embraces a core tenet of the disability rights movement: “Nothing About Us, Without Us,” namely, the imperative to center the leadership of voice and persons most directly impacted by policy and practice. Both Sens. Elizabeth Warren (D-MA) and Sanders included a number of people with disabilities and neurodiverse individuals as advisors in crafting disability policy.

Rebecca Cokley, director of the Center for American Progress’s Disability Justice Initiative, served as a policy advisor to both Warren and Sanders. “Starting off with community integration shows that the Sanders campaign is clearly in touch with the energy and priorities of the grassroots,” Cokley told Time.

Ari Ne’eman, an Obama appointee who also served as a disability policy advisor to both the Warren and Sanders campaigns, concurred with Cokley, telling Arc Digital, “the best disability policies and plans are about bringing disabled people into the community and keeping them there. That is the overarching goal of the disability community.”

Sara Luterman writes in The American Prospect: “Sanders didn’t just seek out people who already love him to develop his plan. Instead, it was developed by a big tent—the kind of coalition many commentators have been skeptical Sanders could pull off.” Luterman also noted on Twitter that the plan was influenced by “cutting edge” experts.

It seems like @BernieSanders didn't invite any of those guys to the table in formulating his disability plan, and I sort of love him for that. Everyone thanked at the end are people who are not only experts, but are at the cutting edge. Sanders' plan is bold as hell.

— Sara Luterman (@slooterman) January 31, 2020

For Sanders, this level of engagement with, and approval from, the grassroots represents a significant departure from his radio silence on disability policy during the 2016 elections. “Sanders has risen from being among one of the worst candidates on disability policy to the leading disability rights champion of the primary,” Luterman writes in the Prospect.

Sanders’ plan has received such widespread admiration because it thoughtfully integrates disability into every facet of his existing platforms, including Medicare For All, Housing for All, Social Security, as well as the Green New Deal climate change proposal. “I’m struck by Sanders’ ability to think through how to make the Green New Deal inclusive of the disability community,” Cokley told Time.

Sanders “Opposes Proposals to Expand Involuntary Commitment Laws,” “Weaken Privacy Protections”

Of all the presidential candidates’ disability platforms, the Sanders plan appears to have the most robust set of rights protections for people with psychiatric diagnoses and disabilities.

As President, Sanders would “oppose proposals to expand involuntary commitment laws or weaken HIPAA and FERPA privacy protections, recognizing that mental health services work best when they are voluntary, evidence-based and available without cost or waiting.”

Disability justice advocate Victoria Rodríguez-Roldán told The Hill that she was honored to have helped advise the Sanders campaign on its disability platform. “It is by far the most progressive disability plan in the field. It’s particularly amazing how it takes such a firm stance against mental health institutionalization and coercive treatment.”

Kathy Flaherty, director of the Connecticut Legal Rights Project, called the plan’s rejection of proposals to expand involuntary treatment “remarkable.”

To see a plan that explicitly rejects calls to expand involuntary treatment is … remarkable. My thanks to every single one of the fierce advocates who helped develop this plan. https://t.co/HESh3MTfuv

— Kathy Flaherty (@ConnConnection) January 31, 2020

Proposes “Aggressive” Enforcement of Olmstead to Address Criminalization 

The plan states that as President, Sanders will “fight to end the criminalization of disability, while also defending the rights of people with disabilities to make their own choices about treatment.”

The Sanders plan includes a radically different set of policy solutions to criminalization than those typically proposed by caregivers and medical providers, which have included an increased focus on beds and involuntary outpatient commitment. The decision to combine a decriminalization agenda with the explicit support for rights and choice is notable, as these policy priorities have often been framed in Washington as being mutually exclusive and in opposition.

Sanders’ disability plan avoids rebuilding the asylums as a solution to incarceration. Instead, the plan proposes to address the criminalization of people with psychiatric diagnoses and disabilities by improving enforcement of Olmstead vs. LC. This landmark 1999 Supreme Court decision gave people with disabilities, including psychiatric disabilities and diagnoses, the civil right to live in integrated, community-based settings.

Ne’eman said on Twitter that the plan’s focus on Olmstead enforcement is “a huge deal,” “given how candidates often talk about mental illness.”

https://twitter.com/aneeman/status/1223245804607102976?s=20

Every state is supposed to have an Olmstead plan as per the law; some states still do not, Flaherty explained via Twitter. The Obama administration led a push to re-invigorate Olmstead enforcement, but such efforts have waned considerably during the Trump era.

The Sanders plan states, “We will use the Olmstead decision to challenge states that have failed to adequately support the voluntary, community-based mental health services that can divert people with mental illness from ending up in the criminal justice system.” He said he would seek to return to the Obama-era momentum on Olmstead, appointing an Attorney General who will “ensure that the Department of Justice will vigorously enforce the Olmstead decision.”

One policy point directly challenges the lawmakers, families, and medical advocates who seek to subvert the Olmstead mandate when it comes to people diagnosed with severe mental illnesses (SMI). Sanders promises to “defend the Americans with Disabilities Act from attempts to weaken it, whether those attempts come from Congress through legislation or businesses challenging the law.”

Advocates calling themselves the “SMI community,” whose policy priorities formed the basis for the Kamala Harris mental health plan, include in their policy platform an effort to dilute Olmstead. Among their policy asks are to “Clarify Olmstead for SMI. Least restrictive care isn’t always least expensive or best. Examine, don’t ignore, a person’s ability to handle and benefit from a less restrictive setting.”

Pursues Meaningful Action on Police Violence Against People with Disabilities

The plan also acknowledges and seeks to end longstanding patterns of police violence that have disproportionately impacted disabled people of color, noting:

“All too often, people with disabilities, especially people of color with disabilities, face violence from law enforcement. This requires more than just training — it requires accountability. Approximately half of all people who die in police-involved shootings have a disability. In order to protect the rights of people with disabilities, we intend to make discriminatory law enforcement interactions with people with disabilities a major enforcement priority of the Civil Rights Division.”

The Sanders plan represents a significant departure from current mainstream policy trends on police violence against people diagnosed with SMI, which generally stop at mandating increased funding for mental health training for law enforcement such as Crisis Intervention Team (CIT) team training, also known as “The Memphis Model.”

Even when CIT training has been effective in de-escalating violent encounters between law enforcement and individuals with disabilities, without an accompanying accountability mechanism, training has not resulted in significant systemic improvement. Furthermore, CIT Training has not been implemented in the majority of law enforcement agencies in America, and there is no consistently enforced legal mandate that only CIT-trained officers be dispatched to 911 mental health crisis calls.

As Alexis D. Campbell writes in the Columbia Human Rights Law Review, “Without the backing of the legal system, even the most well-designed program for training officers on how to best respond to persons in mental health crisis may not protect persons experiencing mental illness from unnecessary uses of police force.”

The plan takes a progressive approach to crisis response, the site of much police violence against distressed and disabled people of color. It would “create a civilian corps of unarmed first responders, such as social workers, EMTs and trained mental health professionals, who can handle order maintenance violations, mental health emergencies, and low-level conflicts outside the criminal justice system.” While Seattle-King County and other counties in the U.S. now employ a co-responder model that includes both mental health professionals and cops, Sanders’ plan would seek to take law enforcement out of the crisis response altogether whenever possible, “freeing police officers to concentrate on the most serious crimes.”

Assumes a Broad Human Rights Orientation 

Both the Sanders and Warren disability plans call for ratification of the Convention on the Rights of Persons with Disabilities (CRPD), the landmark human rights treaty adopted by the United Nations in 2006. America became a signatory to the CRPD in 2009; however, only ratification would make it a fully binding and enforceable mechanism in the U.S. To date, 181 countries have ratified the CRPD.

CRPD ratification would be meaningful for all disabled people, and it has particular legal resonance in the current U.S. policy environment for people with psychosocial disabilities, given the pendulum swing towards an increased policy push for force and coercion.

Article 12 of the CRPD touches the heart of current debates about capacity and choice, declaring that “persons with disabilities have legal capacity on an equal basis with others.” A U.N. technical assistance document on the CRPD acknowledges that “Guardians and tutors acting on behalf of persons with disabilities sometimes fail to act in the interests of the individual they are representing; worse, they sometimes abuse their positions of authority, violating the rights of others.”

The document notes that Paragraph 4 of Article 12 establishes safeguards to protect against the abuse of substituted decision-making mechanisms, such as the appointment of court-ordered guardians or conservators who have authority to make decisions on behalf of people “without necessarily having to demonstrate that those decisions are in the individual’s best interest or according to his/her wishes.”

The Sanders plan is also unique among disability policy plans in its emphasis on promoting supported decision-making models as “a best practice and alternative to guardianship and conservatorship.” The plan states: “Bernie believes that people with disabilities deserve the right to make their own choices.”

The right to choice is a bold vision in a policy environment that increasingly favors substituted decision-making programs. An example of the latter is SB 40, the expanded conservatorship program authorized last year by the San Francisco Board of Supervisors.

SB 40 has been vehemently opposed by a coalition of grassroots groups calling themselves Voluntary Services First. The coalition characterizes the bill as a “developer-backed bill allowing for three pilot California cities to expand conservatorship of people with both psychiatric disabilities and substance abuse issues. It is a naked attempt to target houseless people and remove them from the streets.”

As its name implies, the Voluntary Services First coalition is pushing for “actually providing services and housing as a way to solve this problem. It is such a simple idea and apparently too complicated for city politicians: if real housing, drug treatment on demand and accessible mental health services existed, homeless encampments would shrink!”

Sanders also guarantees housing as a human right in his disability plan: “When we are in the White House, we will guarantee housing as a right for all and end housing discrimination once and for all.” The Sanders plan would allot $32 billion over the next five years to address the housing crisis and homelessness, including doubling McKinney-Vento homelessness assistance grants to build permanent supportive housing and $500 million to provide outreach to homeless people to help connect them to available services.

The Sanders plan would fully fund tenant-based Section 8 Housing Choice Vouchers and would implement a non-discrimination law to address the rampant practice of landlords’ refusal to rent to Housing Choice voucher holders.

Theo Henderson, an unhoused resident in Los Angeles and host of We the Unhoused podcast, shared with Mad in America via Twitter that Bernie’s disability policy plan “would be needed after Trump attacking the disabled community.”

Appointed last December, ‘homelessness czar’ Robert Marbut criticized California early on for its management of homelessness. Marbut has long said that he is against the popular and effective Housing First program, which offers supportive housing for people with disabilities, telling The Huffington Post, “I believe in Housing Fourth.” Marbut’s appointment signals a policy shift to an approach that bundles housing to prolonged compliance with services. Glenn Bailey, executive director of the Crossroads Urban Center, said of Marbut to the Salt Lake Tribune: “His philosophy on homelessness seems to be to kind of incarcerate folks in large campus settings that are away from everyone else in the city and isolate people.”

Centers the Leadership of People with Disabilities

The Sanders plan centers the leadership of people with disabilities in numerous and concrete ways, from the formulation of policy to community-based participatory action research, another aspect distinguishing it from the prevailing mood on mental health policy. For example, a December daylong White House mental health summit did not include a single speaker openly disclosing a psychiatric history or diagnosis.

In contrast, the family- and medical provider-driven forced treatment movement tends to prefer medical authorities as leaders. A common refrain of Rep. Tim Murphy, Dr. E. Fuller Torrey, and other family and medical advocates was that a psychiatrist should be running the Substance Abuse and Mental Health Services Administration (SAMHSA). A cornerstone of Murphy’s “Helping Families in Mental Health Crisis” legislation was the creation of the Assistant Secretary for Mental Health and Substance Use, who reports directly to the head of HHS, a position that is now indeed held by Dr. Elinore McCantz-Katz, a psychiatrist who also heads up SAMHSA.

Sanders’ disability plan would create a new National Office of Disability Coordination. The office would be responsible for “coordinating and making disability policy to advance the full inclusion of people with disabilities, including ensuring every aspect of our public resources are ADA compliant and that the civil rights of people with disabilities are protected and expanded.” This office would be headed up by a person with a disability.

The Sanders plan would also “require condition-specific advisory committees, such as the Inter-Agency Autism Coordinating Committee, to include individuals with the relevant disability as at least half of the public members of the committee.”

Ne’eman tweeted that this requirement represented a “groundbreaking commitment from a presidential candidate.”

https://twitter.com/aneeman/status/1223248295675539457?s=20

While not mentioned by name, under this new policy, the Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC) chaired by Assistant Secretary McCantz-Katz, might have to make some changes. Of ISMICC’s 14 non-Federal public members, currently only two members openly identify as being people living with a mental health condition.

Reflects the Growing Influence of the Disability Rights Movement

Many advocates feel that the strength of both the Warren and Sanders plans represents a testament to the growing power and influence of people with disabilities in the political process. #CripTheVote, a nonpartisan hashtag organized by the Disability Visibility Project’s Alice Wong, Andrew Pulrang, and Gregg Beratan, even hosted a Twitter Town Hall Candidate Chat with Elizabeth Warren last month. As Sara Luterman writes in The Nation of Warren’s participation, “The candidate’s engagement with #CripTheVote is a sign that disability politics has finally gone mainstream.”

#CripTheVote has also extended the invitation to Sanders and all candidates to participate in a Twitter Town Hall to answer questions from disabled voters and allies.

https://twitter.com/SFdirewolf/status/1223273524007038977?s=20

No candidate’s disability policy plan has been perfect, with Warren and Sanders skewing the most towards community inclusion. But the fact that as of this writing, with the exception of Joe Biden, every frontrunner Democratic candidate has issued a disability policy platform represents a significant sea change from the 2016 election.

Even those who support the plan may point out the futility of a Democratic President Sanders or Warren passing any revolutionary legislation, especially in a GOP-controlled Senate. But Sanders anticipates this possible reality, planning to “use the power of the executive to make major disability policy advancements,” and vowing to “take bold and necessary executive action to protect the rights of people with disabilities.”

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

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The President was referring to deinstitutionalization, the unofficial name of the federally funded discharge of the majority of long-stay state psychiatric hospital patients into community-based settings, which began in the 1960’s. News reports, quoting mental health professionals and advocates, regularly conclude that deinstitutionalization policies have resulted in an unreasonably large percentage of the country’s most seriously mentally ill becoming homeless and incarcerated

Before the President’s speech, celebrity physician Dr. Drew Pinsky kicked off the summit, entitled “Transforming Mental Health Treatment to Combat Homelessness, Violence, and Substance Abuse,” with a similarly negative assessment of deinstitutionalization. Pinsky said that the federally-funded process failed “because there were no resources and no plan.” Ex-patients, he opined, “were pouring out of the state hospitals by the hundreds of thousands. And they were going to nursing homes, prisons, the streets, and death. Those were the four potential outcomes.”

Pinsky also criticized the passage of patient civil rights laws in the 1960’s and 70’s that, he claimed, maintain a “silent genocide” in places like Los Angeles County, where three homeless people died a day last year. He bemoaned that only individuals in “the most severe states of psychosis” can be involuntarily committed to a psychiatric hospital. Even then, he noted, all a psychotic patient has to do to get discharged is name the closest place to get food and say they have a place to live. “That’s it,” he fumed, “out, no treatment, no assessment, no ability to determine what the probabilities of future success are with your care. You can just go.”

The former Celebrity Rehab host asserted that failed deinstitutionalization policies and civil rights laws are largely the result of the misguided machinations of 1950’s and 60’s government bureaucrats.

He also blamed the supposedly disastrous policies and laws on a counterculture that had “run amok.” For example, he said, there “was a growing consensus, which was bizarre, that institutions caused mental illness.” 

Pinsky additionally alleged that Americans were misled by the 1962 novel One Flew Over The Cuckoo’s Nest.

Cuckoo’s Nest, about a fictional group of harmlessly eccentric psychiatric hospital patients battling tyrannical clinicians and staff, was adapted into a Broadway play and Oscar winning movie. In all three versions of the story, the nurses, doctors and orderlies use antipsychotic medication, shock treatment and lobotomy to cruelly control and punish the patients.

Quoting White House homelessness czar Robert Marbut, Pinsky said Americans incorrectly believed the Cuckoo’s Nest film was based on a true story. “Our country watched this and thought they were watching a documentary,” he seethed. “They were watching a fictionalized account, a movie, about an imaginary institution!”

Cuckoo’s Nest author Ken Kesey, who passed away in 2001, would likely have disputed Pinsky’s movie review.

After The New York Times’ chief theater critic called the book’s 1963 Broadway adaptation a “shameless catch-all of farce and melodrama,” and two letters to the newspaper labeled the play a “fantasy” filled with “warped absurdities,” Kesey fired back, in a typewritten letter, that “the notion that this setting is only a fictional and fantastic one does an injustice to thousands of patients in hundreds of wards almost identical to that ward on the stage of the Cort (theater).” He argued that, while Cuckoo’s Nest is “about more than just a mental hospital, it is also an attack on tyranny of the sort that is perhaps more predominant in mental hospitals then(sic) any place else in our land.” 

Kesey additionally told of how, on one of his last days at the hospital, he wanted to try shock treatment, “to get some idea why the patients thought it so bad.” After he “did” and “found out,” he advised critics who think Cuckoo’s Nest “is fictionally exaggerated” to “try it first and see.”

“Because,” he warned, “it can never be as bad in fiction as it is in real life.”

A few minutes after implying that Cuckoo’s Nest exaggerated the poor conditions inside of American psychiatric wards, Pinsky briefly backtracked. He conceded that “some of those hospitals were not in great condition” and that “there was grave concerns about what psychiatrists were doing. They were maniacs. They were taking ice picks out of their coat pockets (and) their shirtsleeves and doing lobotomies — their ‘great’ intervention.”

Pinsky disclosed that he had taken care of lobotomy patients decades after they had been operated on. “It was a mess,” he recalled. “This was not a good form of treatment. Yes, some of those hospitals were not in great condition. They were underfunded, understaffed. Not good.”

Nonetheless, the host of Dr. Drew Midday Live stressed that the “laws and systems” advocated for by government bureaucrats, civil rights attorneys and radical authors are no longer necessary. “The 60’s were almost 60 years ago,” he said. “In those 60 years, we have developed some better understanding of these brain conditions, some better ability to treat them, armies of professionals that are well-equipped to help us.”

The problem with current policies, he explained, is that Americans with “serious mental illness” are now “privileged by the law” to refuse medical treatment.

Contradicting Pinsky’s “privileged by the law” statement, news reports from the past 15 months indicate that, if anything, there needs to be more legal protections for Americans held against their will in psychiatric hospitals.

This past December, the Tampa Bay Times reported “glaring weaknesses” in Florida’s involuntary mental health system, ranging from “a lack of parental consent, to students being wrongly committed, to facilities that put students in harm’s way.” In the past seven years, the paper reported, “children have been taken from public schools in Tampa Bay more than 7,500 times and temporarily placed in mental health facilities. They often leave campus handcuffed in the back of police cruisers. Some are as young as 6.”

Also in December, ProPublica reported on a lawsuit that called a Chicago psychiatric facility a “‘hospital of horrors,’ where children as young as 7 were allegedly sexually abused and others were injected with sedatives and physically attacked — all while officials covered it up.” The lawsuit was preceded by ProPublica Illinois and Chicago Tribune investigations that revealed similarly disturbing allegations.

In October, The Seattle Times reported that “(Washington State’s) largest private psychiatric hospital, with 157 beds, routinely has held patients by claiming they wouldn’t be safe if released, only to be contradicted by government evaluators who find no grounds for committing them.” A hospital clinician said that “executives would yell at hospital staffers if they released patients whose insurance had authorized a longer stay.”

In September, another Tampa Bay Times report found that North Tampa Behavioral Health hospital “illegally cuts patients off from their families. Then it uses loopholes in the (involuntary commitment) statute to hold them longer than allowed, running up their bills while they are powerless to fight back.” 

In May, the Cherry Hill Courier Post reported that “A whistleblower lawsuit claims New Jerseyans with intellectual or developmental disabilities were inappropriately diagnosed with mental illnesses, given psychotropic drugs and forced to stay in state psychiatric hospitals long after they were deemed stable enough to return to the community.” 

In December 2018, The Wall Street Journal reported that more “than 100 psychiatric hospitals have remained fully accredited by the nation’s major hospital watchdog despite serious safety violations that include lapses linked to the death, abuse or sexual assault of patients.” 

Also in December 2018, a Mad In America survey (conducted by one of this article’s co-authors) reported that 37% percent of 486 former psychiatric hospital patients “said they were physically abused (in the hospital) in some way.” Over half of the former patients described their hospitalizations as “traumatic.” A similar survey, conducted by an unaffiliated organization, of 63 former Washington and Oregon State patients revealed almost the exact same results.

Many other recent investigative reports, lawsuits, news stories, and blog posts have documented similar stories of the mistreatment, abuse and wrongful commitment of psychiatric patients.

Kesey’s criticism of shock treatment, today referred to as electroconvulsive therapy (ECT), also remains relevant. ECT is in use at over 500 American hospitals; has been linked to ”permanent brain dysfunction”; is the subject of a class action lawsuit; has been irresponsibly marketed and ineffectively regulated; and can still be administered over patients’ objections.

Likewise, laws passed since the publication of Cuckoo’s Nest to limit the unnecessary and punitive use of medication and restraint have had a limited impact. “In many states,” according to lawyer Susan Stefan in 2015, “patients have the legal right to refuse treatment, and there are relatively strict legal limitations on the use of restraint but neither of these are understood to limit either shows of force or threats to rescind privileges.”

For example, a 2015 City Limits investigation found that it was “standard procedure” for doctors in the psychiatric emergency room of New York City’s Bellevue Hospital to “order forced injections of psychiatric medication to sedate and overrule patients who refuse to have blood drawn during the hospital’s admission process.” One patient interviewed for the story said that, at Bellevue, “you just look at someone wrong and they shoot you up with (the antipsychotic) Haldol.”

Like his analyses of One Flew Over The Cuckoo’s Nest and civil rights laws, Pinsky’s assertion that deinstitutionalization resulted overwhelmingly in ex-patients “going to nursing homes, prisons, the streets, and death” requires additional context.

In his 1994 book The Mad Among Us: A History of the Care of America’s Mentally Ill, historian Gerald Grob concluded the “persistence of problems (related to deinstitutionalization) should not be permitted to conceal the more important fact that a large proportion of severely and persistently mentally ill persons have made a more or less successful transition to the expansion of federal disability and entitlement programs.” The misconception of the impact of deinstitutionalization, Grob noted, may be because “the media and the public are prone to focus on a subgroup of young adults or others who have a dual diagnosis of mental illness and substance abuse and who tend to be homeless.”

In a 1993 literature review titled The Homeless Mentally Ill: Myths and Realities, three researchers from London’s Maudsley psychiatric hospital similarly concluded that there are “significant methodological problems” with research suggesting deinstitutionalization policies caused a homeless crisis in the U.S. The authors added that American “homeless people whose only problem is the lack of affordable housing are being institutionalized on the basis of this erroneous assumption (that they are mentally ill).”

Recent research indicates deinstitutionalization policies and patient civil rights laws have minimal impact on the health and quality of life of the majority of homeless Americans. According to the National Alliance on Mental Illness (NAMI), 80% of homeless Americans do not have a serious mental illness. In Los Angeles County, where Pinsky said the weakness of involuntary commitment laws has caused a “silent genocide,” the Los Angeles Homeless Services Authority reported that 71% of people experiencing homelessness “do not report having a serious mental illness and/or substance use disorder.” Furthermore, the leading cause of death among homeless people in Los Angeles County (and across the country) is heart disease, an ailment that psychiatric hospital clinicians are not experts in treating (and which causes the death of people in the general population at the same rate). Likewise, antipsychotic medications — the class of drugs most likely to be given to involuntary psychiatric patients — “may increase the risk of heart disease in as little as a few months.”

Pinsky’s claim that deinstitutionalization policies and patient civil rights laws resulted in mental illness becoming “a feeder to the state’s jail and prison system” is also not supported by the available evidence. In “The Asylum Fallacy” chapter of her 2016 book Insane: America’s Criminal Treatment of Mental Illness, reporter Alysa Roth observed that “it’s far from clear that the same people who had been in the state hospitals later became the core of the jail and prison population with mental illness.” She cited research showing that “the residents of state psychiatric hospitals were largely elderly, female, and white. By contrast, people in jails and prisons are mostly young, male, and not white. Hospital patients overwhelmingly had a diagnosis of schizophrenia; people with mental illness in jails and prison show a range of diseases that is much closer to the range found in the general public.” 

Pinsky’s pronouncement that certain civil rights protections for patients are unnecessary because “we have developed some better understanding of these brain conditions” is likewise belied by the facts.

In an exhaustive 2011 literature review of involuntary commitment criteria, Loyola University-Chicago Constitutional Law Professor Alexander Tsesis noted that “no techniques comparable to x-rays, CAT scans, or blood tests exist, so that (mental illness) diagnoses are entirely (based) on nonverifiable and controversial criteria.” 

A study conducted by four University of Liverpool researchers in 2019 correspondingly found that the accepted criteria for diagnosing mental illness, in the UK and the U.S., is “scientifically meaningless.” Researcher Peter Kinderman remarked that mental illness diagnoses “frequently and uncritically reported as ‘real illnesses’ are in fact made on the basis of internally inconsistent, confused and contradictory patterns of largely arbitrary criteria.”

A recent Johns Hopkins University study of 54 patients diagnosed with schizophrenia revealed the unreliability of psychiatric diagnostic criteria. After the patients received a second medical opinion of their initial assessment, 51% received a different diagnosis. The second opinion doctors determined that the patients actually had significantly less serious anxiety or mood disorders.

People of color and minorities are particularly vulnerable to getting misdiagnosed. Dr. Stephen Stralwski, a professor of psychiatry at the University of Texas at Austin, recently told the Adirondack Daily Enterprise that “African-Americans with severe depression are four to nine times more likely to be diagnosed with schizophrenia than white patients who present the same cluster of symptoms.”

The overdiagnosis of schizophrenia in African Americans may be why they “are overrepresented among persons subject to involuntary commitment and among persons admitted for inpatient psychiatric hospitalization,” as a 2009 analysis by two University of California-Berkeley professors found. In March, English researchers who conducted a meta-analysis of 2 million involuntary commitment cases across the globe similarly concluded that “black, Asian, minority ethnic and migrant groups are at a greater risk of psychiatric detention than are majority groups.”

Even Dr. Allen Frances, who helped tailor a large portion of the current psychiatric diagnostic criteria when he served as the Chairman of the DSM-IV Task Force, considers the diagnostic system horribly broken. In his 2013 book Saving Normal, Frances admitted that, despite their best efforts, the DSM-IV authors “failed to predict or prevent three new false epidemics of mental disorder in children — autism, attention deficit, and childhood bipolar disorder,” as well the “false epidemic” of adult bipolar disorder and “the overdiagnosis of several other disorders that have been puffed up by the drug companies.” He likewise confided to writer Gary Greenberg in 2010 that “there is no definition of a mental disorder. It’s bullshit. I mean, you just can’t define it.”

Doctors’ ability to determine if a patient meets the dangerousness criteria for involuntary commitment is also fundamentally flawed. In his review of civil commitment literature, Alexander Tsesis found that there is no “professionally accepted definition or definitive actuarial tools to make such a temporal prediction” about dangerousness. Moreover, Tsesis observed, “studies conducted at least since the 1970s have found that psychiatrists are no better at predicting future dangerousness than laymen.”

It may not be Pinsky’s fault that he overstated the ability of psychiatrists to accurately diagnose mental illness and assess dangerousness. To prepare his White House summit presentation, he told the audience that he relied “heavily” on Dr. E. Fuller Torrey’s 2013 book American Psychosis: How the Federal Government Destroyed the Mental Illness Treatment System. Torrey co-founded Treatment Advocacy Center (TAC), a nonprofit lobbying group that has “passed, improved or updated” 69 involuntary mental health treatment laws in 34 U.S. states since 1999. TAC regularly publishes research showing that, without psychiatric treatment, people diagnosed with serious mental illnesses like schizophrenia, bipolar disorder and major depression disproportionately become violent, homeless, drug addicted and/or gravely disabled. 

Torrey and TAC also have a history of cherry-picking data — as the authors of this story have previously documented.

In 2014, Salon reported that Torrey relies on “that most modern of rhetorical tricks: the relentless and contextless deployment of bogus statistics” to advocate for “incarcerating the mentally ill without due process and forcing medicative treatment.” Torrey’s assertion that 10% of U.S. homicides are committed by untreated individuals with serious mental illness, the Salon reporters noted, “is based on sensational news reports and bad math, which he then repeats to a credulous media, like an ouroboros of fear-mongering and sloppy scholarship” (a media watchdog and patient advocate also called Torrey out on his homicide claim). Likewise, in 1997, without providing any citations, Torrey accused the “psychiatric survivors” advocacy community of causing the suicides and accidental deaths of “at least half-a-million persons who were severely psychiatrically ill.” Unsurprisingly, psychiatric survivors took offense.

Torrey is also the country’s most outspoken proponent of identifying and treating psychiatric anosognosia, a condition traditionally associated with neurological ailments like stroke, traumatic brain injury and dementia. On a video on TAC’s website, Torrey defines anosognosia as a “real neurological condition caused by the damage to the brain, most likely to the frontal and parietal lobes.” As a result of this brain damage, Torrey then says, people with anosognosia “can’t recognize that they are sick.” He concludes that “it’s very clear that about half the people with schizophrenia and roughly 40% of the people with bipolar disorder have some degree of anosognosia.” In 2010, Torrey lobbied successfully to insert anosognosia into the latest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM), commonly referred to as the Bible of psychiatry.

In 2012, psychiatrist Sandra Steingard analyzed a summary of neurological studies on Torrey’s TAC website supposedly proving the existence of psychiatric anosognosia. In her analysis, titled Anosognosia: How Conjecture Becomes Medical “Fact,” Steingard observed that the differences in the brain scans of people with and without anosognosia “are subtle and do not clearly distinguish a person with ‘lack of awareness’ of psychotic symptoms from anyone else.” She concluded that the promotion of anosognosia as a real condition “confers a certain sophistication of understanding and knowledge that is not supported by the data.” An Indiana University Professor of Psychology similarly referred to the insertion of anosognosia into the DSM as an example of “some puzzling areas in which opinions are presented as fact.” He added that the debate surrounding the existence of anosognosia “should not be limited with premature claims of consensus.”

Despite a glaring lack of proof that anosognosia affects people with schizophrenia and bipolar disorder, Pinsky made the condition a central theme of his White House summit speech. He uttered the word “anosognosia” nine times, spoke exclusively about the condition for nearly three minutes and suggested it was the primary reason psychiatric patients’ civil rights need to be rolled back. “We protect that symptom from allowing us to get at the patient to prevent them from dying,” he said. “Drug addicts get anosognosia, (people with) manic psychosis (get) anosognosia, schizophrenics (get) anosognosia. It’s the same biology as in dementia, encephalopathy, and other brain conditions and yet we privilege it in the law, and people are dying.”

While there is a dearth of evidence substantiating Torrey and Pinsky’s psychiatric anosognosia theory, there are two robust studies linking involuntary commitment to an increased risk of suicide.

A 2019 study of 900 psychiatric American inpatients found that individuals who perceived coercion during their admission were “more likely to make a suicide attempt after being discharged,” even after controlling for suicidal ideation or self-harm at the time of admission. 

A 2014 Danish study of 2,429 individuals in the year before they committed suicide came to an equally disturbing conclusion: The risk of dying by suicide increased exponentially for individuals who received psychiatric treatment in the preceding year, even after controlling for other risk factors. A 28-fold increase in completed suicide was associated with psychiatric emergency room admission and a 44-fold increase was associated with psychiatric hospital admission. The researchers editorialized that it is “entirely plausible that the stigma and trauma inherent in (particularly involuntary) psychiatric treatment might, in already vulnerable individuals, contribute to some suicides. We believe it is likely that a proportion of people who suicide during or after an admission to hospital do so because of factors inherent in that hospitalization.”

On the other hand, according to psychiatrists Dinah Miller and Anette Hanson, there “are no studies that prove that involuntary treatment prevents suicide.”

There may be a better way to treat Americans experiencing “severe states of psychosis,” as Pinsky called it, than involuntary treatment. In his 2012 book Anatomy of an Epidemic, Robert Whitaker told of the remarkable mental health care story happening in Finland’s western Lapland region.

For a long time, the region, which has a population of about 70,000, had one of the highest rates of schizophrenia in Europe. Then, beginning in 1969, the Finnish psychiatrist Yrjö Alanen introduced a new form of mental health treatment for psychotic patients, in which individuals were treated on a “case-specific” basis. “Some first-episode patients would need to be hospitalized, and others would not,” Whitaker observed. Interventions centered around “group family therapy — of a particularly collaborative type.” The region’s clinicians did not dictate the location and form of therapy; in fact, the patient’s home, rather than the hospital, was “the preferred place” for the first meeting with doctors. During those “open dialogue” therapy sessions, “everybody’s thoughts can become known.”

The result of this new type of treatment was that psychiatric hospitalization became much less necessary in western Lapland. Over a seventeen-year period, “not a single first-episode psychotic patient has ended up chronically hospitalized,” Whitaker reported. “Spending on psychiatric services in the region dropped 33 percent from the 1980s to the 1990s, and today the district’s per-capita services is the lowest among all health districts in Finland.” At the end of a two-year study in the early 2000’s, “84 percent of area patients had returned to work or school, and only 20 percent were taking antipsychotics.”

Today, Whitaker noted, “the long-term outcomes of psychotic patients in western Lapland are the best in the Western world, and this region now sees very few new cases of schizophrenia.”

The development of western Lapland’s groundbreaking mental health treatment program was due, in large part, to Yrjö Alanen’s belief that “the hallucinations and paranoid utterances of schizophrenics, when carefully parsed, told meaningful stories.”* Alanen thus instructed the region’s hospital psychiatrists, nurses and staff to “listen to the patients” and their stories.

Besides President Trump and Dr. Drew Pinsky, seventeen administration officials, politicians, mental health advocates and public officials spoke at the December 19 White House mental health summit.

None of the summit participants were described as former psychiatric hospital patients.

This fact was pointed out by disabled healthcare advocate Kendally Brown, who tweeted afterwards that the summit “privileged the voices of family members, caretakers, doctors….everyone BUT the disability community.”

When those ideas involve the input of ACTUAL DISABLED PEOPLE sitting at the table. But you just participated in a White House charade that privileged the voices of family members, caretakers, doctors….everyone BUT the disability community. https://t.co/Tgh8Z9zkA7

— Kendall Youens (@kendallybrown) December 27, 2019

Compounding the lack of participation of former and current patients, a major theme of the summit was that Americans diagnosed with “serious mental illness,” because of a lack of insight supposedly caused by psychiatric anosognosia, should not be able to make their own treatment decisions.

In other words, anyone watching or reading about the White House mental health summit was implicitly and explicitly instructed not to listen to the patients.

The consequences of ignoring the insights of psychiatric hospital patients was documented by psychiatrists Dinah Miller and Annette Hanson in their 2016 book Committed: The Battle Over Involuntary Psychiatric Care. The first chapter of Committed is about the involuntary hospitalization of a woman named Eleanor, who recalled her interactions with unempathetic hospital staff:

I would rather die than go in again. I am not depressed, and my psychiatrist considers me normal, but I can’t live through that again. The staff was abusive, demeaning, and dismissive. I felt in fear for my life. Any lack of cooperation was met with physical and chemical punishment.

While seeking out stories of other former psychiatric patients, the authors found that “there were many people who wanted to discuss how they’d been injured by involuntary psychiatric hospitalization.” Conversely, they noted, it was “much harder to find someone who believed that he or she had been helped by (involuntary hospitalization). An online request for positive stories was answered by only four patients, two of whom were in Australia and South Africa.”

Miller and Hanson added that there “are organizations composed of people who assert they have been injured by psychiatric treatments, of civil rights activists who strive to protect the rights of those with mental illness, and of parents who long to get much-needed help for their children—even if it means forcing that care.”

“Yet,” the psychiatrists observed, “there is no organization of patients who say they were helped by involuntary care and strive to make it available for others.”

* * *

*Alanen’s belief that “hallucinations and paranoid utterances” tell “meaningful stories” is supported by the 2019 Johns Hopkins study that found that “when someone reports ‘hearing voices’ it may be a general statement of distress rather than the literal experience of hearing a voice.”

The post How President Trump and Dr. Drew Got It Wrong on Deinstitutionalization appeared first on Mad In America.

Professor Hatch is the author of two books. His first book, Blood Sugar: Racial Pharmacology and Food Justice in Black America, critiques how biomedical scientists, government researchers, and drug companies use the concepts of race and ethnicity to study and treat ‘metabolic syndrome,’ a biomedical construct that identifies people at high risk of heart disease, stroke, and diabetes. His second book, Silent Cells: The Secret Drugging of Captive America, examines how custodial institutions like prisons, nursing homes, and the U.S. military use psychotropic drugs to manage mass incarceration and captivity in the United States.

His 2018 Wesleyan TedX talk is entitled “How Social Institutions Get Hooked on Drugs.”

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Leah Harris: In the preface of Silent Cells, you write about not wanting to participate in liberal science, but in “liberatory social science.” How has this perspective informed your work?

Anthony Ryan Hatch: I had just graduated from graduate school and joined a small group of other self-identified Black assistant professors in this really small postdoctoral fellowship at the Morehouse School of Medicine in Atlanta. That fellowship was designed to have us focus on issues of HIV/AIDS, mental health, and substance use inside “correctional settings.” I joined this group of Black scholars, and we were all trying to get a foothold in the academy and get our careers going. We were visited that first summer in the program by a whole range of experts in corrections and health policy. And the whole point of this fellowship was to professionalize us, to get us ready to enter into the “grant mill,” to get funding, publish papers, and develop our careers.

The logic is pretty simple: it’s kind of a bribe. You take this money and then, in some ways, you have to compromise on the kinds of questions you want to ask. You have to ask the kinds of questions that institutions of power want answered. So if you’re asking questions that have to do with the least among us, it’s harder to get funding for that. We were all encouraged to pursue a relatively safe, clear, and clean research project in the area of re-entry.

It’s not to say that social science and health research that is institutionally funded can’t be important. I certainly have had my own institutional funding. But I just saw it as hugely contradictory that we were trying to study and understand mass incarceration “safely,” from the safe shores of liberal science. You’re producing information and knowledge that can be used to reform institutions. That’s the basic idea of the liberal approach to government. We produce science that is supposed to help us make the right decisions about policy.

But as I uncovered in this book, sometimes you don’t have all the information you need. Sometimes people haven’t been asking the right kinds of questions. And so, you really have to sit back and think about what questions need to be answered.

It seemed to me that there weren’t enough health researchers looking at the prison and thinking about incarceration from a critical point of view. From a point of view that wanted to liberate people from the prison, as opposed to simply reforming those institutions. Not just to challenge their logic, or to challenge the ideas, but to be a tool that can be used toward abolitionist ends. I didn’t want to do a project that kept the prisons going, that made the prisons smarter or stronger, or gave them greater capacity for holding people captive. That was part of my thinking in making that claim. It’s very difficult to adhere to that, but I tried to do that in this project.

Harris: How did Silent Cells come to be?

Hatch: In the summer of 2009, our group of young scholars were all visited by a woman who had a brand new job at a for-profit prison healthcare company called Geo Care. And for some time prior to that, she had been, I believe, the head psychiatrist at the Georgia Department of Corrections. She had given us a presentation about the insider’s view of what was happening in terms of prisoner mental health and prisoner mental health care.

I had already been thinking about ways of bridging my previous work on racism in medicine, in mental health and metabolic health. That was part of my dissertation that became the book Blood Sugar. I was trying to think about ways to connect what I had been doing in that world to this world that I was now in. One of the things I looked at in my first project was pharmaceuticals that treat metabolic disorders and pharmaceuticals that cause them. In that book, I was looking at second generation antipsychotic medications and the fact that they essentially cause the condition known as metabolic syndrome.

I wanted to follow these drugs into the prison. So I asked this former prison psychiatrist what she thought about the use of psychotropic drugs inside the prison. She rocked back on her heels, smirked, and said, “Well, let me put it to you this way. Each year the warden sends me and my staff a nice bottle of something, because he knows we keep the prison quiet.”

It was a remarkable thing for her to have said. On one hand, it fed into the conspiratorial framework that has, in some ways, been justified by the ‘massiveness’ of our system. The New Jim Crow by Michelle Alexander certainly describes the massive system of mass incarceration as a conspiracy to re-enslave Black people, other people of color, and America’s poor.

I wanted to know if the good doctor was right. Was it the case that psychotropic drugs were being used to keep the prison on a “psychic lockdown?” There was so little published about this practice, which is why I even asked her.

That was in 2009, and that began for me what became a ten-year investigation of the relationship between psychotropic drugs and institutional captivity in the U.S. It began with this focus on prisons. But as soon as I began looking at the prison, I began to see connections to other institutions that function much like prisons.

On one hand, we know that psychotropic drugs, when used properly and carefully monitored, ideally under very short term conditions, can be helpful to people who are suffering forms of psychic trauma and life trauma. But the rules, the laws, and the regulations of these institutions, when given this powerful technology, create perversions of power. People who are held in these institutions are not always getting “care” as such. The drugging isn’t always just about their mental health, and improving it. Sometimes these drugs can be used to subordinate. I wanted to try to investigate that boundary between when we’re using a drug ostensibly for the right reasons, and when we’re using it for the wrong reasons.

Harris: Can you share some of the obstacles that you faced in trying to learn about the function of psychotropic drugs in upholding the carceral state?

Hatch: One of my fixations over the years on this project was trying to document what we knew and what we didn’t know. Why don’t we know these things, if prisons have been using psychotropic drugs since the 1950s? One of the things that I talk about in the book is the fact that for decades in the United States, prisons were the testing site for pharmaceuticals. Psychotropics entered the prison as ‘experimental medicines,’ not necessarily as things they were going to use for control. I became focused on understanding why we didn’t know certain things. We didn’t have survey data or health data. We only had legal cases to give us information about what was going on inside the prison, in terms of pharmaceuticals in general, and psychotropics in particular.

I didn’t want to have to seek permission from the prison to study the prison. That was an important political commitment, and methodological commitment, in doing this book. First of all, there are very rigid ethical rules regarding what you can do, such as getting access to prisoners, to prisoner health records, or any of the other things. Even getting inside would have to be framed as “wanting to improve prisoner mental health” or other kinds of liberal goals which may be worthwhile, but weren’t quite getting to the critical issue that I thought was important. In the book, I used only publicly available evidence, that any reasonably technologically savvy citizen could find.

I think it’s kind of lucky that we stumbled upon government audits of prison pharmacies. Because states, departments of corrections, and jail systems were spending so much money on pharmaceuticals through the 2000s in particular, the state and federal auditors were enlisted to go into the prison and to figure out what was going on. Over a period of years, my colleague Renee Shelby and I gathered thirty-three publicly available audits that show you what they’re doing. They document what the state sees itself doing with respect to these practices. You can get a sense of the entire economic and political system that facilitates the distribution of pharmaceuticals into the prison. It was a world that I hadn’t seen described anywhere. I felt it was important to try to describe how these different institutions work together to get drugs from pharmaceutical companies into the prison.

Harris: I wanted to ask you about Chapter Four, where you discuss how psychotropics are used in other settings beyond the prison, whether that is active duty military, nursing homes, or children receiving care in the foster system?

Hatch: The central idea to start with is pacification. When an institution faces a crisis, it’s got to solve the crisis somehow. The three institutions that I explore all have faced serious population crises in recent decades, due to really inhumane social policies. The sociology frame here is that you have institutions that have bad policies that don’t support people. They get into crisis and then the crisis has to be pacified. The crisis has to be solved. It has to be put down. The crisis has to be managed somehow.

Take, for example, active duty, U.S. military volunteers. In 2003, when the United States and the so-called “coalition of the willing” decided to invade the sovereign nation of Afghanistan, and then soon after, Iraq, they soon realized that they faced a real problem, which was that they didn’t have enough volunteers to actually people this new war on terror. And so, they changed a longstanding Department of Defense policy regarding who could volunteer. If you had had a serious mental health problem or were taking psychotropic drugs, you couldn’t volunteer for the U.S. military. They would turn you away. They were concerned about suicide risk, about all kinds of things. They changed that policy. The Department of Defense began shipping psychotropic drugs out into the live war zone, across the globe, for soldiers to use.

Again, they had never done this before. They had this inhumane and unjust policy, this war policy, that created a population crisis. They needed soldiers. And so then they figured out a way to keep soldiers on the battlefield. And that is literally the language that the Department of Defense uses: they say they want to “conserve the fighting strength.” Through multiple deployments, at any cost, they want to make sure that they’re keeping these soldiers on the battlefield.

The other institution I consider in this chapter is the U.S. foster system. Anyone who can perceive or has empathy knows that the foster system can be a dark place for young people who’ve already experienced much higher rates of sexual violence and trauma, other forms of abuse and neglect. And then they enter into this foster system, including the group home system. There they are administered psychotropic drugs at three, four, five times the rate of children in their local comparable communities. There’s just countless stories of overmedication in these settings to keep these kids “managed.” No one wants to deal with them. Systems aren’t in place to help them connect to family, to build family in new ways. And so they’re “managed” in this way.

And the same thing is true for elders in nursing homes. For decades, government regulators and activists have tried to get a handle on the ways that elders in nursing homes and assisted care living facilities are drugged. This is literally a cultural trope — the elder in the nursing home. You can’t watch a cultural representation, a movie, or a TV show about the nursing home and not see an elder in a chair somewhere, “Thorazined out.” It’s part of the cultural zeitgeist of this moment. Many of these elders are put on psychotropic medications soon after arrival, with no medical justification whatsoever. Up to a quarter of nursing home residents who are on these drugs don’t actually have a reason for being on them. As I write about in this chapter, part of the reason for this is the aggressive practices of pharmaceutical companies, who are actively promoting their products — in one case, through major fraud — in these institutions. Johnson and Johnson paid a huge $2.2 billion fraud settlement for pushing antipsychotic medications on elders for the treatment of dementia.

Taken together, these are all institutions that you can’t just leave. If you volunteer for the service, you can’t just walk away from that. If you’re held as an elder — some of those facilities are locked down, closed-door facilities. You can’t just leave. Similarly, for the kids in foster care, you’re a ward of the state. The state literally has possession of the body, legally.

It seems to be the case that the U.S. carceral state extends far beyond the prison. These institutions are all working very much like prisons do. The sociologist Erving Goffman called them “total institutions.” He said that they were society’s “dumping grounds.” Strong words, but they seem to apply in this case.

Harris: In Chapter Six, you talk about the killing of Trayvon Martin by George Zimmerman. Zimmerman was on multiple psychotropic drugs at the time, and you point out that this was a fact that was greatly downplayed. What do you think is the societal block to exploring this correlation?

Hatch: This is one of the areas where I feel like it’s difficult for the science to speak to this question. I write about this a little bit. It’s difficult to know, from an empirical or scientific standpoint or through quantitative analysis of the data on mass shootings, gun violence, and psychotropic drug use. It’s very difficult to be able to say that these drugs are a causal factor in America’s mass shooting epidemic. When you look at our death rates from gun violence, both for suicides and homicides, it’s profoundly sad. But it’s very difficult empirically to prove this.

When you don’t have all the information, you’re forced to theorize. How do you explain what I see is a pretty troubling linkage between predominantly young men who commit gun violence of both the “mass” and “not mass” variety. So many of them reportedly were taking psych meds at the time of the shootings.

But we don’t exactly know how psych meds work. We don’t actually know what their specific mechanisms of action in the brain are. We know what effects they create, but we don’t know how they achieve those effects. And so in some ways there’s this little black box in terms of what these compounds are doing to our brain chemistry. People like Robert Whitaker and many others have written extensively about the clinical trial research, and the basic biological research into how these drugs work. And it seems to me to be hugely troubling that we don’t exactly know how they work yet, but we see these patterns of violence in our society to which they are linked. Outside the United States, however, this linkage has been made in several European countries, where they’ve identified that certain compounds are linked to suicide risk in youth and other forms of violence and death in society.

I think that efforts to try to keep guns from the hands of people who are identified as having serious mental illness, efforts to monitor their access to this constitutional right — whether or I agree with it or not, it is a constitutional right — are ill-conceived. They’re not considering another possible root cause that I think needs to be investigated further. So in some ways, this is one of the areas in the book where I think that more research needs to be done to try to figure this out. Because this combination of widespread societal psychotropic drug use and the mass availability of weapons is creating a situation where far too many of us are dying and being injured. Although it’s very difficult for me to say that A causes B.

Harris: You make an interesting analogy towards the end of the book: that institutions, like people, can become addicted to psychotropic drugs. 

Hatch: That is the big question that I tried to answer: Can we have this system of mass incarceration without these drugs? In what ways is our system of mass incarceration and mass captivity reliant or dependent on these drugs, these technologies, to function? We didn’t even talk about the use of psychotropics in privately run immigrant detention facilities, particularly among youth, which is hugely problematic, that is happening right now at the border. These institutions couldn’t do what they are charged with doing if they didn’t have these drugs to keep at least some people silenced.

They’re not doing it to everybody. I don’t want people to walk away with the misconception that prisons, and these institutions, are drugging every single person that they possibly can, with lines of people getting pills every day. That’s not exactly the picture that this book draws. It seemed to be that the “magic number” was twenty percent. You need to keep a fifth of them down in order for things to function.

This is a problem of them being too big. There’s far too many people held in captivity. The systems of captivity need to be much smaller and much more highly selective in terms of what they’re trying to do. You could have a system of incarceration in this country that is vastly smaller. Just contributing to decarceration would be one way to solve this problem. But these institutions have to rely on these drugs, because that’s the only way they can keep things going. It’s very simple: business as usual requires that they be able to manage both people who they believe have, and who do in fact experientially have serious mental disorders, as well as that other “fringe” element, that other random unruly element that is just taking up too much labor.

For example, in nursing homes they’re drugging people not because they’re causing fights, but because then they don’t have to attend to them as much. Like an alcoholic will spend their last dime for the next drink, these institutions are spending enormous amounts of money on pharmaceuticals generally, and on psychotropics in particular.

One of the facts I tried to evidence in this book was that the United States government, in all of its institutional diversity, is the single largest purchaser of psychotropic drugs in the world by far. As a citizenry, as a people, we have to ask: Why? This is supposed to be our government. We’re basically funding our government to incapacitate many of us.

The brilliant legal scholar Patricia Williams uses language I draw on in the book to describe this. She uses the language of “spirit murder.” Spirit murder involves a disregard for those people whose lives qualitatively depend on our regard. So these are people whose lives depend on us caring about them, because they’re in a position of vulnerability. They literally are held captive. We have to care for them. And our constitution, to the extent that you adhere to it, demands that. Basic human decency demands that. Social justice demands that we care for these people, and not subordinate them.

At Wesleyan, I teach a class on anti-psychiatry, which explores the intellectual and social history of that movement. One of the things I’ve learned from teaching that class, from researching this work, and from staying connected to what’s been happening in community settings, is that it is not to say that these medications aren’t helping people survive. For many people, they are. And it is not to say that every person who is using a psychotropic drug is a pawn in this grand conspiracy to subordinate society psychically. But it is to say that we can’t allow that meaning of psychotropics as therapy, as medicine, as healing to keep us from looking at ways in which they’re being used for harm. And so we’re looking carefully at those harms, and they are institutionally patterned.

The other point that I make in that concluding chapter is that just as the individual addict may be wreaking havoc in their own life, these institutions are also creating effects. We can document them and see them. Those patterns have effects on people’s lives, related to these drugs and how they’re used. That needs to be investigated. What I call for in the book is a “sobering” moment: a moment where we stop and really think about what we’re doing with so much pharmacopeia. Do we have to have this much pharmacopeia? It seems to me like a huge experiment. This is the worst kind of experiment, because it’s the one where no one knows who no one’s watching. The scientists are off the clock. And that, to me, needs to be fixed.

Harris: I’m wondering if you can tell us a little bit about how psychotropics are evolving in the digital age. What does that look like vis-à-vis your own research?

Hatch: In 2017 Otsuka Pharmaceuticals formed a partnership with Proteus Digital Health. This was a remarkable event in my mind. They sought and won FDA approval for Abilify MyCite. The pill itself contains a sensor, and the consumer of the pharmaceutical wears a patch on their skin that receives this transmission from inside the body. There are bioenzymes that are registered when the pill is consumed. So it’s a sci-fi, futuristic kind of enterprise designed to treat “adherence.” The idea here is that you’re going to take this Abilify MyCite so that the doctor or your family can know that you took the drug.

Proteus Digital Health is in financial trouble. They’re not making enough money. Abilify MyCite, which came out two years ago, is not really taking root in community settings. It seems unnecessary, partly because we know that adherence to a drug regime is not just a digital problem or technological problem; it’s a social one. From the research, we know that people have to have adequate family and social support, if they’re going to take medication on a regular basis. And they have to have the financial means to take that medication regularly, if that’s what their treatment plan indicates.

So maybe this Abilify MyCite was destined to fail. They should have perhaps done better market research before they put it out there. My colleague Ruha Benjamin, who’s been writing brilliantly about race and technology and ethics for years, raises this question. Just because we have the technological means and wherewithal to do something new, should we? I think many of these new developments in digital health and digital therapeutics raise that question for us. Why do we have to be transformed into these kind of ‘cybernetic figures’ in order to receive care and to be cared for? Why do we have to essentially bind with, fuse with, and hybridize with corporate technology?

There are many other health conditions for which technologies like this are currently being deployed. I think this was a new development, and one I feared at the time would be a problem. But just because Proteus Digital Health isn’t doing well, I wouldn’t assume that means we’ve seen the last of these kinds of technologies. I think people really ought to think carefully about what they mean.

Harris: This brings me to this bigger question of “technocorrections,” which you reference in your book as a whole array of technologies and strategies deployed to manage the risks prisoners pose to society. 

The RESPONSE Act was introduced last year by Republican Senator John Cornyn of Texas following mass shootings in his state. It includes provisions about returning citizens and injectable antipsychotic medications. Is this another version of “silent cells,” extending the walls of the prison into the community, in the name of decarceration? Especially if you consider it alongside the variety of electronic monitoring technologies that returning citizens are often subjected to?

Hatch: I looked at the RESPONSE Act, and it is a curious thing. On the one hand, it seems to provide much-needed resources and societal focus. But it also comes with this other side — this expansion of the state’s efforts to surveil, coordinate, and monitor the citizenry. To monitor the psychological well-being of the citizenry, and to control it. That is done in the name of ostensibly reducing risk, of reducing harm, increasing safety, creating a sense of security, a feeling of security. At the end of Silent Cells, I wrote that what’s being produced through the application of technocorrections is a feeling of “affective security,” a feeling that we’re safe from this “dangerous other.” It’s not really security. And that’s not the danger. The danger comes in the mechanism of control used to create this feeling.

And so it’s this magical kind of process where somehow we lose sight of the technology. It’s acting on us, but we don’t quite see what it’s doing to us, and how it’s ordering society. And how the technology is building a world that we have to then inhabit. The RESPONSE Act, and any effort to extend the boundaries of carcerality, has to be viewed in this context. The argument in Silent Cells is that you no longer need the physical cell of the physical prison, if you can create the prison in a person’s mind. So if you create a psychic prison, a mental prison, you no longer need the jail itself.

What is at stake is what it means to be institutionalized. If we extend these technologies out into the so-called “non-correctional world,” they’re expanding that domain of captivity. People often make this distinction between being in the prison and being so-called “free.” But I think there’s a kind of a coercion and institutionalization that happens “out here.”

On one hand, the RESPONSE Act, by extending what you might think of as “care,” is just changing who gets paid. It’s changing who benefits. Pharmaceutical interests have long known that the prison is a central site for profit-making.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post The Management of Captive Populations with Psychiatric Drugs: An Interview with Anthony Ryan Hatch appeared first on Mad In America.

President Trump himself made a brief appearance and gave some remarks, where he waxed nostalgic for the institutions of his childhood and called for them to be rebuilt:

In language similar to statements he made in the wake of mass shootings last August, Trump went on to say:

A Sustained Assault on Civil Rights and Bodily Autonomy

The mental health summit opened with remarks by Steve Wagner, a top HHS official who has played a key role in managing the family separation crisis at the U.S. border, where a rising number of migrant children and adults, including those diagnosed with serious mental health conditions, have died in U.S. custody due to neglect.

In November, a Federal judge ruled that the U.S. must provide counseling and support services to migrant families who have been traumatized by the administration’s deliberately-orchestrated family separation and detention policies. 

Wagner announced Federal expenditures for mental health programs as part of the $1.4 trillion budget bill that Trump signed into law on Friday night, including: $120 million for the Substance Abuse and Mental Health Services Administration (SAMHSA); $200 million for Certified Community Behavioral Health Clinics (CCBHCs); and $19 million in funding for Assisted Outpatient Treatment (AOT). AOT is a euphemistic term for Involuntary Outpatient Commitment, programs that force persons diagnosed with serious mental illness to accept treatment utilizing the “black robe effect.” Wagner said that these line items were a “down payment” on a “much larger set of reforms,” adding: “There is much, much more work that needs to be done.”

A Narrow Historical Reading

Celebrity internist “Dr. Drew” Pinsky provided an historical overview for the summit, which he said was “heavily” informed by E. Fuller Torrey’s 2013 book American Psychosis: How the Federal Government Destroyed the Mental Illness Treatment System. 

Pinsky’s remarks centered largely around building a case for reducing the standards for involuntary treatment; or in his words, “closing the gap between ‘harm to self or other’ and ‘need for care.'” He roundly condemned historic efforts to advance the civil rights of institutionalized persons and people with disabilities. Raging against the Lanterman-Petris-Short Act, signed into law in 1967 by then-California governor Ronald Reagan, Pinsky proclaimed that it “maintains the silent genocide on our streets.”

The Lanterman-Petris-Short legislation created minimum basic standards to protect individuals from being indefinitely warehoused in facilities or institutions and treated against their will. It is widely considered to be the model for involuntary civil commitment procedures nationally.

“Our civil rights have outweighed the self-evident need for treatment,” Pinsky said.

https://www.instagram.com/p/B6R4bpUFeiX/?utm_source=ig_web_copy_link

Pinsky used the term “anosognosia,” originally meant to describe the “lack of insight” into their condition characterizing persons with traumatic brain injury, dementia, and other neurological conditions. Pro-forced treatment advocates have co-opted the term primarily for political purposes, naming it as a symptom of schizophrenia to further justify involuntary care. 

“But when the same condition — the same symptom — evolves in the setting of a psychiatric illness, we privilege it in the law. We privilege it. And we protect the patient — we protect that symptom — from allowing us to get us to get at the patient to prevent them from dying. Drug addicts get anosognosia. Manic psychosis — anosognosia. Schizophrenics — anosognosia. It’s the same biology as in dementia, encephelopathy, and other brain conditions.”

Pinsky’s language is also consistent with ongoing advocacy efforts on the Federal level to get schizophrenia reclassified as a neurological condition requiring involuntary care. Meanwhile, the very way that schizophrenia has been scientifically constructed is being questioned: Jim van Os, a professor of psychiatry at Maastricht University, is part of a growing number of professionals around the world calling for the end to the concept of schizophrenia. Such professionals say that the lack of reliability or validity in the schizophrenia diagnosis should move us away from understanding it as a discrete brain disease, and more as a spectrum.

Dr. Drew referred to the existence of “armies of professionals” who are “well-equipped to help us.” In reality, advocates widely agree that mental health care professionals are in short supply, and the system is stretched to its breaking point. The sector faces chronic workforce shortages and high levels of staff turnover. And most professional associations and state credentialing bodies do not mandate mental health professionals to receive any training in critical skills such as suicide care, even as the U.S. suicide rate rises. 

Pinsky said from the podium that he had promised Trump’s new homeless czar Robert Marbut, who was in attendance, that he’d share Marbut’s thoughts on the 1975 film One Flew Over the Cuckoo’s Nest: “Our country watched this and thought they were watching a documentary.” After some audience laughter, Pinsky clarified, “They were watching a fictionalized account, a movie, about an imaginary institution.” The film, despite its fictional nature, is widely credited with helping to open Americans’ eyes to the ongoing realities of institutional life.

And as Kathy Flaherty, director of the Connecticut Legal Rights Project, wrote in 2018 in the Hartford Courant:

“Psychiatric hospitals are facilities where people who are there, in theory, to get help for a medical condition are subject to violence and trauma — in the form of involuntary medication, restraint and seclusion, disrespectful treatment, and, in the most egregious cases, physical abuse. People remain unnecessarily institutionalized and segregated — in violation of their civil rights — because community based services and supports are inadequately funded.”

While Donald Trump has frequently been diagnosed from afar by psychiatrists, a controversial practice, there were no actual individuals with disclosed psychiatric histories participating in the summit. If there had been, there may have been a different response to Marbut’s One Flew Over the Cuckoo’s Nest quip.

Clinician and writer Rachel Levy, MSW published a blog on Mad in America about a recent survey on experiences of hospitalization in the Pacific Northwest. The survey questions were based on an earlier survey of 500 individuals, also published at Mad in America. The majority of the 84 respondents to the Pacific Northwest survey reported feeling disrespected in the hospital, and said that conditions there did not feel safe or secure. Over fifty percent of the respondents reported that they had been involuntarily hospitalized, and the vast majority either agreed or strongly agreed that their experiences in the hospital could be considered “traumatic.”

Pinsky admitted at some point that the hospitals of the past were “not in great condition, underfunded and understaffed.” But as the above survey responses indicate, this description is not a relic of the past, and holds true today, in both the public and for-profit mental health care systems. Universal Health Services: Behind Closed Doors is an ongoing campaign run by the Service Employees International Union (SEIU) to draw attention to how America’s largest for-profit behavioral health chain maintains chronic understaffing in the name of cutting costs, routinely jeopardizing both staff and patient safety. 

Pinsky’s views on expanding forced treatment, which usually includes a forced psychiatric medication component, may be influenced, at least in part, by his Pharma ties. The television doctor has taken money from Pharma on at least one known occasion. In the late 1990s, Pinsky began using his celebrity platform to market the antidepressant Wellbutrin for a non FDA-approved purpose as a libido-booster, without disclosing that he was being paid to do so. That Pinsky had received $275,000 from GlaxoSmithKine only became known in 2012 through documents disclosed over the course of a $3 billion settlement between the DOJ and the Pharma giant regarding fraudulent prescription drug marketing practices.

We are thrilled to hear @drdrew speaking at the White House Mental Health Summit about Dr. Torrey's legacy and the all of the things that the Treatment Advocacy Center fights for everyday. pic.twitter.com/jlFU4GuJZC

— Treatment Advocacy Center (@TreatmentAdvCtr) December 19, 2019

“The Need for Reform” Panel Pushes Anti-Civil Rights Agenda

Following Pinsky, the “The Need for Reform” panel further reinforced his forced treatment message, and condemned a wide variety of groups from the civil rights and disability rights community. DJ Jaffe, founder of MentalIllnessPolicy.Org, told the audience:

“Meet with your police, meet with your sheriff without mental health people in the room, so they don’t have to be politically correct and they can talk about the real issues that need solving. And in order to solve the issues of civil commitment and assisted outpatient commitment, we have to stand up to the ACLU, to Bazelon, to Disability Rights, to Protection and Advocacy — to many mental health groups who believe that being psychotic and delusional is a right to be protected rather than an illness to be treated.” 

John Snook, executive director of the Treatment Advocacy Center (TAC), a nonprofit organization that has worked for nearly two decades to expand involuntary outpatient and inpatient treatment, followed Jaffe. While Snook made mention of the need for a “full continuum of care,” his remarks focused largely on involuntary and most restrictive forms of care. 

“Congress needs to eliminate the discriminatory IMD Exclusion,” Snook said. “We need to have a baseline of places to get care that we can build the system from.” The IMD Exclusion was enacted at the beginning of the Medicaid program in 1965 to de-incentivize states from continuing their historic overreliance on institutional care. 

At one point in his remarks, Snook acknowledged former Rep. Tim Murphy (R-Pa), who was sitting in the audience. Murphy was the primary driver of TAC-aligned legislative efforts in Congress beginning in 2013. He continued in this role until he resigned from Congress in 2017 amidst a personal scandal, which was followed by widespread allegations of staff mistreatment. While Murphy’s most authoritarian reform efforts were significantly impacted by advocacy among disability and civil rights groups, many of his provisions were folded in some fashion into the 21st Century Cures Act, which was signed into law during the final days of the Obama administration.

Snook mentioned advocate Kerry Morrison, whose visit to Trieste, Italy’s community mental health system, was profiled in the Los Angeles Times. Snook related that Morrison told him, “They have a whole new model for how we treat mental illness. Why don’t we try it here?”

The Italian “Trieste” model is not new. Since it closed its institutions in the 1970s, Italy has largely been able to realize the promise of de-institutionalization, with a focus on building a strong voluntary, easily-accessible community-based system. As early as the 1980s, the “revolutionary” Trieste model began to attract the attention of the media, policymakers, and doctors in the U.S., but it never gained any sort of traction in America.

Today, Trieste is a World Health Organization Collaborating Center for Research and Training in Mental Health, which means the site helps the WHO teach countries how to do de-institutionalization. The Trieste model is based on the motto “Freedom First,” representing a significant departure from the currently prevailing involuntary treatment policy direction.

The final speaker in the “Need for Reform” panel, Houston, Texas-based Christian author and neuroscientist Matthew S. Stanford, spoke about the role of faith-based communities. Stanford was quoted in 2016 in the Southern Baptist Texan as saying that parents should not allow their transgender children to transition because “the science shows us that doesn’t really help” and “that’s not what God intended.” Family rejection is a commonly cited factor in high rates of transgender youth suicide in the U.S.

The “Need for Reform” panel was moderated by Dr. Elinore McCantz-Katz, head of SAMHSA and Assistant Secretary for Mental Health and Substance Use, a position that was created through a provision in the Murphy legislation and folded into the 21st Century Cures Act. In 2017, Tim Murphy sharply criticized McCantz-Katz on C-SPAN due to her prior SAMHSA involvement, calling her a “swamp alligator.” Tim Murphy’s pick had been Dr. Michael Welner, a self-described “forceful ambassador of forensic psychiatry” who argued after the 2014 Isla Vista shooting that parents rather than the courts should have the legal ability to “direct treatment” of their adult children with serious mental illness diagnoses.

A Punitive, Racialized Approach to Homelessness Looms

A common refrain from the pro-forced treatment advocates at the summit was that “four walls” are not the solution to the crisis. Dr. Drew slammed such efforts in California during his presentation: “The vast majority have serious mental illness and drug addiction. Four walls are not going to do anything, if they would even go in.”

This rhetoric is consistent with the policy direction of the current administration, which with the appointment of Marbut earlier this month, signaled a move closer to a law enforcement response to the housing crisis. Marbut, who has been known to oppose feeding unhoused persons, has been described as a “real life horror” by housing advocates. While the administration’s plans remain under wraps for now, advocates fear an executive order that would criminalize people living in homeless encampments.

According to CityLab, advocates say that the government is looking closely at ways to turn former correctional facilities and federal buildings into shelters and to move unhoused persons away from urban centers, one of several punitive efforts being engineered by the White House’s Domestic Policy Council, along with with the U.S. Department of Housing and Urban Development. 

A report issued by the White House in September on the “State of Homelessness in America” signaled a clear shift away from Housing First, the non-coercive supportive housing program favored by advocates and previous administrations. The report pinned homelessness on causes ranging from the over-regulation of housing markets to the “tolerability of sleeping on the streets.” Housing First was criticized because the program gives unhoused persons “supportive housing with no preconditions” and they “do not face requirements as a condition of retaining housing even after they have been stabilized.”

“I believe in Housing Fourth,” Marbut told HuffPost in 2015.

Questions of race loomed large but remained largely unspoken at the summit, with panel participants and attendees being overwhelmingly white. People of color are disproportionately subjected to homelessness and mass incarceration, the ongoing consequences of the war on drugs, as well as the restrictive interventions and forced treatment proposals discussed.

Karen Lincoln, an associate professor of social work at the University of Southern California told CityLab in September: “It seems like the [Trump administration’s] approach is going to be more punitive just because of the way that African-American and poor people and Latinos have been constructed in the current rhetoric of this administration.”

The summit followed just one day after the Congressional Black Caucus’ Emergency Taskforce on Black Youth Suicide and Mental Health issued a report entitled “Ring the Alarm: the Crisis of Black Youth Suicide in America.” In a news release, the task force’s research lead Michael A. Lindsey, executive director of the NYU McSilver Institute for Poverty Policy and Research, said: “Alarming trends among Black youth have been overlooked as America grapples with rising suicide rates.”

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post Trump Calls for “Keeping Very Dangerous People Off Our Streets” at Mental Health Summit appeared first on Mad In America.

Last month, the Senator from California declared to a crowd in Iowa: “mental health justice is on the ballot!” Harris said, “I have a mental health care policy that is robust, because I understand and have worked with these issues for years — that we have so much undiagnosed, untreated trauma in America. And we have got to stop stigmatizing this issue.” On November 25, Harris unveiled her mental health care plan in South Carolina. 

We have failed to address trauma and mental health in our communities and in the criminal justice system for far too long. It's time for an intervention. pic.twitter.com/QMkyxwnJmm

— Kamala Harris (@KamalaHarris) October 29, 2019

Key elements of the Harris plan

Harris’s “mental health care crisis plan” is the latest iteration of a series of controversial mental health policy proposals, heavily influenced by pro-force and coercion caregivers and family members, that have surfaced over the last few decades at the local, state, and federal levels. These include former Rep. Tim Murphy’s (R-Pa) Helping Families in Mental Health Crisis Acts of 2013 and 2015, key provisions of which were folded into the 21st Century Cures Act in 2016; as well as the RESPONSE Act, introduced in October by Senator John Cornyn (R-Tx).

What these mental health policy proposals share in common is an emphasis on promoting a range of coercive and restrictive interventions that infringe on the rights and privacy of persons with psychiatric diagnoses; in particular, of those individuals meeting the criteria for “serious mental illness” (SMI). SMI is defined in the Harris plan as “mental, behavioral, or emotional disorders, such as schizophrenia or severe bipolar disorder, that substantially interfere with major life activities.” As Zoey Turtino writes in The Daily Campus, “This phrasing gives healthcare providers and policy makers free range to decide for themselves what is and isn’t considered a serious mental illness.” The pro-force advocates also frequently invoke the construct of anosognosia, or “lack of insight” into one’s condition, as both a defining characteristic of “SMI” and a pretext and justification for coercive and paternalistic policies. Psychiatrist Dinah Miller writes in Psychology Today that the term is “politically loaded: when someone uses it, by extension, it has come to mean that they are in favor of legislation to make it easier to treat patients against their will.”

Repeal of the IMD Exclusion

A cornerstone of the Harris plan included increasing access to inpatient hospitalization via the repeal of what is known as the Institutes for Mental Disease (IMD) Exclusion. The IMD Exclusion prohibits the use of Medicaid financing for adult psychiatric hospitalizations and residential facilities larger than 16 beds. This restriction was put in place at the very beginning of the Medicaid program in 1965 for a reason: to compel states to invest in community-based services instead of unnecessarily warehousing people in segregated institutional settings that are breeding grounds for abuse, neglect, and death. 

The Harris plan called for doubling the number of treatment beds nationwide, with a priority focus on states said to have bed shortages such as Iowa, Nevada, South Carolina, and Michigan. 

A key aspect of the narrative fueling Kamala’s plan is the oft-repeated assertion that “jails and prisons have become the new mental hospitals.” However, mental hospitals are also becoming the new jails and prisons, a fact which is rarely acknowledged in the mainstream media or by lawmakers. Recent suicide prevention requirements put forth by the Joint Commission, the accreditation body for psychiatric facilities, include substantial environmental adaptations that compel psychiatric hospitals to look and feel more akin to prisons rather than the therapeutic environments that they are imagined to be. 

There is also a significant and growing body of research to show that psychiatric hospitalization is associated with an increased risk of suicide upon discharge, another fact rarely acknowledged in public narratives about the need for beds.

As Jennifer Mathis points out in a 2018 Psychiatric Services article advocating against repeal of the IMD rule: 

“Although our mental health systems are in crisis, neither the IMD rule nor insufficient hospital beds are the primary problem. The primary problem is the failure to implement an effective system of intensive community-based services, which have been shown to prevent or shorten hospitalizations. Repealing the IMD rule would do little to alleviate the true crises in our public mental health systems and would likely deepen those crises.”

Regardless of one’s position on increasing access to institutions, a November 2018 Medicaid rule has essentially rendered the “need” for a legislative repeal of the IMD exclusion obsolete. The new rule, as mandated in the 21st Century Cures Act, encourages states to apply for Medicaid demonstration waivers to cover acute stays in IMDs, while also requiring states to demonstrate expanded access to community-based care options. In contrast, a legislative repeal of the IMD exclusion, as called for by Harris and others, would likely cost the Medicaid program around $40-$60 billion over a decade, according to a report by the Congressional Budget Office (CBO).

We are very happy to see @KamalaHarris release her plan on dealing with the mental health crisis. Highlights of Harris's plan include repealing the IMD exclution and doubling the number of treatment beds nationwide. Thank you Senator Harris! https://t.co/1sKdZrfXp6

— Treatment Advocacy Center (@TreatmentAdvCtr) November 25, 2019

Other presidential candidates have endorsed a repeal of the IMD Exclusion, including Pete Buttigieg (D) and Amy Klobuchar (D-Minn).

Increased funding and support for “Assisted Outpatient Treatment”

The plan also called for the expansion of funding and support for the “Assisted Outpatient Treatment” (AOT) program. AOT is a euphemistic term used to describe involuntary outpatient commitment ordered by a judge, with the threat of involuntary inpatient hospitalization for those who do not comply with their treatment orders. Harris’s plan says AOT is meant for those individuals who “sometimes fail to comply or cannot comply with treatment and become homeless, are arrested, or otherwise deteriorate without treatment.” AOT relies on what is called the “black robe effect” to enforce treatment compliance.

The Harris plan makes reference to “multiple studies” showing that AOT “improves treatment outcomes, lowers risk of arrest, violent behavior, and other criminal justice encounters, and reduces homelessness, all at lower costs and with fewer restrictions than inpatient treatment.” 

Yet this characterization of AOT’s evidence base is based on a false interpretation of the existing scientific literature. As Robert Whitaker explains in a recent Mad in America Report, despite increasing state and federal support over the last two decades for AOT, there is scant evidence as to its effectiveness. To date, there have been only three randomized clinical trials (RCTs) of the program—two in the United States and one in the UK. A 2011 Cochrane Collaborative review of the evidence for AOT’s clinical and cost effectiveness resulted in findings that stand in strong contrast to the positive claims made by Harris and AOT advocates regarding the program. Whitaker goes on to note: 

There has been little to no research conducted on how former and current recipients of AOT orders themselves experience the program. In a 2018 Mad in America survey of 45 people, over half of respondents indicated that they were “very dissatisfied” with AOT, and 16% were “dissatisfied.”

Amend HIPAA to include ‘good faith’ disclosures

An additional plank in the Harris plan revolves around substantially eroding the privacy protections afforded by the Health Insurance Portability and Accountability Act (HIPAA), originally passed in 1996. In the Harris plan, this plank is entitled “Amend HIPAA to ensure family members can adequately support persons with mental illness.” What this means is that the plan would create a lower standard of privacy rights for people with psychiatric diagnoses and disabilities, which would allow providers to disclose protected health information to family members over a person’s objection “out of a good faith belief that it was necessary to enhance the health, safety, or welfare of the person involved or the general public.” 

This proposal closely mirrors that of the HIPAA-weakening provisions found in Tim Murphy’s Helping Families in Mental Health Crisis legislation of 2013. These provisions were substantially toned down in the 2015 version of the legislation, due in large part to the efforts of disability and privacy advocates. The HIPAA provisions that were eventually folded into the 21st Century Cures Act do not alter the privacy law; instead they call for HHS to clarify the law in such a way as to “ensure that health care providers, professionals, patients and their families, and others involved in mental or substance use disorder treatment have adequate, accessible, and easily comprehensible resources relating to appropriate uses and disclosures of protected health information under HIPAA, and to issue guidance to clarify permitted uses or disclosures of protected health information.” 

HHS has since issued such clarifying guidance on HIPAA, in compliance with the Cures Act. But this development has not deterred pro-force advocates from continued calls to dismantle the privacy law as regards people labeled with SMI, even if such efforts actually defy Congressional intent as spelled out in the Cures legislation.

In a 2019 joint letter to the Department of Health and Human Services (HHS), the American Civil Liberties Union (ACLU) and the Bazelon Center for Mental Health Law write: “The HIPAA Rules already contain the flexibility to permit communications between healthcare providers and with family members. But misunderstanding or misinterpretations of HIPAA have led to calls for its reform. Agency efforts would be better spent in providing more information and education as to the flexibility and constraints of the Rules, rather than to undertake revisions.”

The letter goes on to say that “HIPAA Rules already permit family, friends, or others who are involved in the patient’s care to receive protected health information that they need to know about the patient’s care under appropriate circumstances, including: with the patient’s permission; when the patient has been given the opportunity to object but does not; when a person poses a danger that could be averted by disclosure, in emergency circumstances, and when a person lacks the capacity to consent or object to disclosure.”

Reclassify “schizophrenia, schizoaffective, and bipolar disorder” as neurological illnesses

An aspect of the Harris plan that has received far less attention than the policy planks mentioned above, yet is at least as controversial, is the move to reclassify “schizophrenia” and related disorders as neurological conditions. The rationale, as stated in the plan, is that “while these conditions are currently classified as ‘behavioral,’ a classification that accentuates their neuroscience will improve access to treatment and research funding.” 

This rhetoric is aligned with a sustained push for the reclassification of schizophrenia, led by the advocacy group Schizophrenia and Related Disorders Alliance of America (SARDAA) and supported by the Treatment Advocacy Center and the National Alliance on Mental Illness. In May 2018, SARDAA requested to have schizophrenia included in the implementation of the National Neurological Conditions Surveillance System (NNCSS) provided for in the 21st Century Cures Act. NNCSS is a CDC program that received $5 million from Congress to gather data on the prevalence of and risk factors for neurologic conditions in the US population. Linda Stalters, a retired nurse who is CEO and founder of SARDAA, told Medscape Today, “We have the support of other organizations, family members, and patients, and there are multiple private Facebook pages supportive of caregivers and patients — for example, one has over 7000 participants, including people who hadn’t originally been supportive of this movement but are now.” SARDAA held a reclassification symposium on November 4 in New York City. 

Reclassification efforts in the US occur amidst the backdrop of international advocacy efforts to do away with the diagnosis altogether, such as the Campaign to Abolish the Schizophrenia Label (CASL), headed up by psychiatrists Jim van Os and Marius Romme, as well as psychologists John Read and Richard Bentall, among many others. As Bentall told BBC News: “We do not doubt there are people who have distressing experiences such as hearing voices or paranoid fears. But the concept of schizophrenia is scientifically meaningless. It groups together a whole range of different problems under one label — the assumption is that all of these people with all of these different problems have the same brain disease.”

In a 2018 letter on the occasion of Schizophrenia Awareness Week, the International Society for Psychological and Social Approaches to Psychosis (ISPS) – Australia summed up over a decade’s worth of efforts to abolish the label: “We argue that the term schizophrenia is unscientific and stigmatising — it does more to harm than help people who may experience these extreme states.”

The Disability Community Fights Back

The Harris plan was immediately met with a swift public response from people living with psychiatric diagnoses and disabilities, as well as cross-disability advocates. Alice Wong, founder and director of the Disability Visibility Project, and co-partner, #CripTheVote, created a compilation of “responses, concerns, and critiques from mentally ill and disabled people & others.” 

Vilissa Thompson, creator of #DisabilityTooWhite and founder of @RampYourVoice, and Dr. Amelia N. Gibson both questioned the HIPAA plank in Harris plan, and its assumption of universal “good faith” among mental health providers. 

Do you know how many horror stories I know of that involves helping professionals who did NOT act in “good faith” to the clients they served in the mental health services field?

LOTS.

— Vilissa Thompson (@VilissaThompson) November 26, 2019

https://twitter.com/AmeliaNGibson/status/1199181407555399681?s=20

Freelance journalist and commentator Sara Luterman, in a Vox essay entitled “How Kamala Harris’s mental health plan could hurt the most vulnerable,” describes a 2014 experience with hospitalization for suicidal thoughts as “one of the most harrowing and dehumanizing experiences of my life.” Luterman characterizes the psych ward as “a world in which rights are just suggestions, and where staff exert an exceptional amount of control over every aspect of your life.” 

Luterman explains how calls for increased “access” to inpatient psychiatric care run directly counter to the idea of “access” as enshrined in the Americans with Disabilities Act (ADA): “The ‘access’ promised in Harris’s plan is to locked wards, forced drugging, and the denial of the same right to privacy afforded to other Americans. Her proposed policy distorts ‘access’ beyond recognition.”

And Luterman writes of the high discontinuation rates of prescribed antipsychotics and mood stabilizers, the very drugs that people under AOT orders are typically compelled to take: “This is not because people are stupid or lack insight into their own illness. Antipsychotics and mood stabilizers tend to have heavy side-effect profiles.” She adds: “Assuming that a person is incompetent and that their perceptions are irrelevant will not make that person want to participate in mental health treatment.”

Azza Altiraifi underscored the ways in which the plan magnifies the violent intersectional oppressions faced by people of color in the carceral and mental health systems, tweeting: “This plan reflects the violent convergence of anti-Blackness, racism & sanism that undergirds the carceral state.”

https://twitter.com/Azza_Alt/status/1199153323812806662?s=20

AOT, where it has been implemented, is often done so in a highly biased manner. According to a 2014 report by the Maryland Disability Law Center et al, “Studies on outpatient civil commitment conducted in North Carolina and New York revealed that people of color and those living in poverty are disproportionately impacted by involuntary community treatment orders.” The 2005 NYLPI report found that the implementation of AOT in New York is “severely biased.” In New York, African Americans were subjected to court orders five times more frequently than whites, while Latinx persons were two and a half times more likely than whites to be under a court order.

In North Carolina, two-thirds of individuals court-ordered to community treatment were African American, despite only representing 22% of the total state population. And 88% of AOT orders in New York were found to include some forced medication component. This is especially concerning due to the increased risk of long-term severe side effects that African-Americans can face from antipsychotic medication.

Other advocates pointed out how the erosion of HIPAA protections could tilt the power dynamic in favor of domestic abusers and family members wishing to interfere with their adult trans children’s access to medical care. As Zoey Turtino writes in The Daily Campus, “This would be especially devastating for transgender youths seeking medical care without the knowledge of their potentially abusive parents.”

Victoria Rodriguez-Roldan, director of the Trans/GNC and Disability Justice Projects at the National LGBTQ Task Force, told The Hill: “A basic rule in mental health advocacy is that if the policy is being proposed solely by family members, then odds are it will be harmful,” adding: “This is because often we operate with the assumption that those relatives are the ones who know best, rather than those with lived experience, and fail to acknowledge how many times, those loved ones are not necessarily so loving, such as domestic abuse situations.”

Disability advocate and civil rights lawyer Alison Barkoff created an in-depth Twitter thread to explain what Kamala Harris got so wrong, and “what she SHOULD have focused on.” 

I have spent much of the last 2 days thinking about the mental health plan from @KamalaHarris and how she could have gotten it so wrong. This thread is about that and what she SHOULD have focused on. #CripTheVote (1)

— Alison Barkoff (@AlisonBarkoff) November 27, 2019

The thread reflected on the Olmstead vs. LC decision, which began with plaintiffs Lois Curtis and Elaine Wilson, two women from Georgia living with psychiatric diagnoses and intellectual disabilities. Curtis and Wilson cycled in and out of hospitals, unable to receive the supports they needed in the community. The landmark Olmstead decision requires states to eliminate unnecessary segregation of persons with disabilities, and to ensure that persons with disabilities receive services in the least restrictive setting, and one that is appropriate to their needs. In the thread, Barkoff explains and provides evidence for how the Olmstead Rule, when enforced and implemented, results in a reduction in both incarceration and hospitalization.

In speaking only to family members regarding “SMI,” Harris was led to espouse principles that ran directly counter to her own disability plan.

The psychiatric hospitals in Olmstead are the very “Institutions for Mental Disease” that Harris proposes to double the number of beds in! If she looked at DOJ #Olmstead settlements, she'd understand that her proposal would move states further from complying with the law! (9)

— Alison Barkoff (@AlisonBarkoff) November 27, 2019

At every turn, the disability community has fought the pro-force agenda, often managing to weaken the most coercive policy proposals without eliminating them altogether. Advocates mobilized quickly to respond to the worst aspects of the Harris mental health plan. They share that Harris was about to issue a revised plan in response to the disability community concerns, which would have eliminated the IMD repeal plank, the AOT plank, and the reducing HIPAA privacy rights plank. The Harris campaign was instead planning to include more of an emphasis on enforcing Olmstead and expanding community services first before developing more hospital beds.

The Pro-force Agenda Is Not Going Anywhere

Over the last twenty years, a growing cadre of caregivers, family members, and grassroots organizations, calling themselves the “SMI community,” have been wildly successful in promoting the pro-force agenda, both in the mainstream media and in local, state, and national policy.

Robert Whitaker and others have written about the decades’ long crusade of Dr. E. Fuller Torrey to increase force and coercion, and to reduce privacy protections throughout all aspects of the U.S. mental health care system. In 1998, Torrey founded a national advocacy and media mouthpiece in the Treatment Advocacy Center, of which DJ Jaffe, author of Insane Consequences: How The Mental Health Industry Fails The Mentally Ill and creator of MentalIllnessPolicy.org, was a founding board member. Both Torrey and Jaffe are frequently consulted by both the right and left-wing media as policy experts, and their views are frequently amplified by journalist Pete Earley in his popular newsletter and blog.

On Facebook and in his newsletter, Jaffe took partial credit for the Harris plan, with credit also going to Scott and Leslie Carpenter. The Carpenters are an Iowa couple, parents of a son labeled with SMI, who have been distributing pro-force policy documents to the candidates visiting Iowa ahead of the presidential election. From their position, they are well poised to exert an ongoing influence on presidential candidates. The Carpenters are also credited directly on multiple occasion by Ron Powers, author of the 2017 New York Times bestseller No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America.

Powers wrote an effusive blog in support of the Harris plan, in which he stated: “In one breathtaking stroke, Kamala Harris has just widened the contours of presidential campaign history and thrown light into the darkest corridors of shameful human suffering.”

Powers also wrote a blog entitled “The Anti-Treatment Empire Strikes Back” as a response to Sara Luterman’s Vox piece critiquing the Harris plan. In it, Powers resorts to a tactic often employed by the pro-force advocates: to discredit their critics through ad hominem attacks and strategic falsehoods. In this blog, Powers describes Luterman as being “anti-treatment.” But Luterman does not take an “anti-treatment” stance, just an anti-forced treatment one.

Luterman clarified: “I’m against the use of force to push medications and treatment modalities that can be harmful,” adding: “Some people are overmedicated. Some people don’t actually do better on meds and would be fine with more holistic interventions. People deserve to make such major choices about their own lives.”

In a further effort to discredit Luterman, Powers accuses her of being a “Szazian,” and by extension, possibly a Scientologist. Luterman is not a Scientologist, and told this reporter via Twitter that she has never even read Szasz. “They just made a bunch of stuff up about me out of whole cloth,” Luterman said.

In recent years, additional family members have written books with policy positions mirroring those promoted by Dr. Torrey, DJ Jaffe, Ron Powers, and their acolytes. These include DeDe Ranahan, a self-described member of the “SMI community” who wrote a book entitled Sooner than Tomorrow: A Mother’s Diary about Mental Illness, Family, and Everyday Life. Ranahan appears to be using her platform as an author to mobilize for a pro-force agenda, with a focus on the current crop of Democratic presidential hopefuls. In August, journalist Pete Earley published her group’s Five Point Plan on his website, as did Ron Powers, from which the Harris plan lifted heavily and directly on nearly every single point, down to the fine details.

While Harris is out of the race, the extremist ideas that inspired the first draft of her mental health plan, which remains on her website, continue to endure and proliferate. Over the last twenty years, the current socio-political climate has been heavily influenced by the pro-force agenda. The American public and lawmakers on both sides of the aisle are ever-more receptive to the narrative that certain people with mental health problems are dangerous and/or “lack insight,” and therefore must be forced into treatment against their will.

A study published in October in Health Affairs found that public perceptions regarding potential violence and support for coercion have been rising, especially concerning the diagnosis of schizophrenia. The study’s authors concluded: “Despite solid evidence that people with mental illness are unlikely to be dangerous, such prejudice can lead to support for inappropriately using legal means to force people into treatment.”

And the SMI community isn’t going anywhere. On December 5, shortly after Harris’s exit from the Democratic presidential race, Ranahan published an updated and expanded version of the original Five Point Plan. The new plan seems to target Olmstead protections specifically raised by disability rights advocates. There is a point under “Pay attention to supportive housing” that states: “Clarify Olmstead for SMI. Least restrictive care isn’t always least expensive or best” and “Examine, don’t ignore, a person’s ability to handle and benefit from a less restrictive setting.” This rhetoric aligns with consistent efforts on behalf of the pro-force advocates to divorce the arbitrary category of “SMI” from the rights and protections afforded to all other persons with disabilities or diagnoses.

Under the “Revamp Involuntary Treatment” category, the updated plan advocates to expand the criteria for forced mental health care, calling for “lack of insight (anosognosia) and grave disability as criteria for determining involuntary treatment.” The group wishes lawmakers to “Establish a federal standardized ‘need for treatment’ involuntary commitment law” and, in an apparent response to Olmstead, says to “Base restrictive settings on actual abilities, not wishful thinking or one-track plans.”

Ranahan clarifies the SMI community’s plans to influence candidates going forward, with a strategy to “Refocus our efforts on the remaining candidates — Republican and Democrat.  Right now Buttigieg and Klobuchar have good plans. Warren and Booker are working on plans. The White House will be hosting a summit on Transforming Mental Health Treatment to Combat Homelessness, Violence and Substance Abuse on December 19. Thank you for your help.”

The Harris mental health plan rallied the disability community once again to fight for “Nothing about us, without us” and to demand an acknowledgement of the principles of the Olmstead decision. Now, the SMI community has Olmstead in the crosshairs. Decades of hard-won rights to liberty, self-determination, and privacy are in the balance.

“All we can do is share information,” Kathy Flaherty, executive director of the Connecticut Legal Rights Project, told The Hill. “It’s the elected officials or their staff who have to carefully consider all the information they receive and then make responsible, well-informed decisions. . . . Clearly we are still learning how to most effectively communicate our message to folks at the national level, but I do think ultimately it’s on them to do a bit more to facilitate access.”

https://twitter.com/aneeman/status/1199178233973018624?s=20

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

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