Dear PBS,

This month, you are screening a documentary called Bedlam that examines the United States mental health crisis. While we (a community of psychiatric survivors, ex-patients, clinicians, family members, and activists) know that no movie can include every perspective, additional voices and context are needed to ensure that the film doesn’t further marginalize or harm those of us with lived experience of mental health challenges. 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. With this letter, we hope to inspire an ongoing spirit of dialogue, and are committed to ensuring that the potential policy responses prompted by the film truly contribute to better outcomes, and not more of the same failed solutions we have witnessed in the past.

Bedlam tells the story from the point of view of a psychiatrist, at the expense of important voices that are mostly omitted from the film’s narrative: ex-patients, psychiatric survivors, and others diagnosed with mental illness. Patients are depicted almost exclusively in crisis moments or as being acted upon (restrained, locked in seclusion rooms, or injected with psychiatric drugs). These representations only fuel existing stereotypes about those diagnosed with mental illness. That we have historically been perceived as objects, only visible during acute psychosis, only contributes to more stigma and discrimination.

Moreover, the root causes of mental health crisis are barely addressed. In a recent Q&A, Director Ken Rosenberg explained, “we made the film originally in the emergency room — we felt that was the place where crises began.” But the seeds of crisis are planted much earlier than an emergency room visit, influenced by trauma, structural oppression, and poverty. While some scenes of the movie are set against a backdrop of poverty or homelessness, these are generally depicted as an effect of having a mental illness, rather than the underlying cause. It is irresponsible to remove mental health from its societal context, particularly as the spread of COVID-19 is contributing to significant traumatic stress for many Americans, brought on by an unprecedented period of isolation, uncertainty, and grief.

Bedlam focuses heavily on “deinstitutionalization,” or the closure of state hospitals in the 1960s and 1970s, as the historical impetus of the mental health crisis in America — suggesting a return to institutions as a viable solution. While the documentary doesn’t necessarily push its own agenda, prominent institutions featured in the film (the Treatment Advocacy Center and National Alliance on Mental Illness) are in favor of building more psychiatric hospitals and expanding forced confinement and medication. These approaches are driven by the concerns of desperate family members worried about loved ones in crisis, but they curtail personal agency and rights and have repeatedly failed to attain promising results.

In the film, mental health treatment is raised as a solution for the hundreds of thousands of people wrongfully incarcerated in prison due to mental health challenges. We are entirely in support of decarceration and the aims of the Black Lives Matter movement. But simply shifting people from one incarcerated state to another is not a solution. Those of us who have spent time in both jails and psychiatric institutions know that these are two sides of the carceral system, and history has also shown this to be true. Although hospitals are designed under the guise of care and healing, and well-intentioned individuals work in them, for many they are a site of loss of autonomy and human rights, restraint, isolation, and retraumatization. This is not a policy solution we can embrace. We can do better.

This is where another crucial omission comes into play: Decades of activism, dozens of promising alternative solutions, and an endless trove of innovations are not mentioned at all. Since the 1970s, the psychiatric survivors, mad pride, disability rights, and recovery movements have fought to be heard both in and outside of the system. Out of this tradition, many rights-based alternative approaches have been developed and tested over the last 50 years, including Open Dialogue, Soteria houses, the Hearing Voices approach, and peer-run community centers. These alternative models represent holistic, culturally-grounded alternatives to traditional, medicalized settings. They transform service users into agents of change rather than passive recipients of care, create space for mutual dialogue, and are informed by the social factors that contribute to inequality and trauma. Such approaches are given a cursory nod in Rosenberg’s book of the same title, but not mentioned at all in the movie.

While we appreciate PBS using its platform to shine a light on mental health (and openness to publishing alternative perspectives), there is an additional opportunity to center the voices of currently and previously incarcerated and institutionalized people. In line with your goals to “express a diversity of opinions” and “empower individuals to achieve their potential and strengthen the social, democratic, and cultural health of the US,” we call on PBS to:

• Organize a live streamed Q&A event featuring people with lived experience (ex-patients, survivors), to complement the Q&A you did previously with the CEO of NAMI
• Put disclaimers and references to criticism when you show the film, especially on the website.

Our voices matter, too. We have been fighting for a say in the outcome of our lives for decades. While the pain and danger experienced by those incarcerated in psychiatric hospitals is particularly egregious amid the COVID-19 crisis, we face immense harm on a daily basis, and have been stigmatized for hundreds of years. It’s time for ex-patients, survivors, and formerly incarcerated individuals to not just be depicted in stories about mental health, but to be telling those stories. By taking the time to understand the needs and challenges of those who are most marginalized and centering those voices, we can truly transform our system to work for all.

Signed,

Organizations:

• Institute for the Development of Human Arts
• American Association of People with Disabilities (AAPD)
• American Center for the Integration of Spiritually Transformative Experiences (ACISTE)
• Arizona Center for Disability Law
• Association of University Centers on Disabilities (AUCD)
• Autistic Self Advocacy Network
• Bazelon Center for Mental Health Law
• Center for Public Representation
• Community Advocates of Montgomery County
• Connecticut Legal Rights Project, Inc.
• Delaware Community Legal Aid Society, Inc.
• Disability Law Center — Massachusetts
• Disability Law Center of Alaska
• disAbility Law Center of Virginia
• Disability Law Colorado
• Disability Rights Arkansas
• Disability Rights California
• Disability Rights Center — New Hampshire
• Disability Rights Center of Kansas
• Disability Rights Connecticut
• Disability Rights Education & Defense Fund (DREDF)
• Disability Rights Florida
• Disability Rights Iowa
• Disability Rights Maine
• Disability Rights Mississippi
• Disability Rights Nebraska
• Disability Rights New Jersey
• Disability Rights New Mexico
• Disability Rights New York
• Disability Rights North Carolina
• Disability Rights of West Virginia
• Disability Rights Ohio
• Disability Rights Oregon
• Disability Rights Pennsylvania
• Disability Rights Rhode Island
• Disability Rights Tennessee
• Disability Rights Texas
• Disability Rights Vermont
• Disability Rights Washington
• Disability Rights Wisconsin
• Disability Visibility Project
• DRW Mental Health Advisory Council
• Equip for Equality
• Georgia Advocacy Office
• Hearing Voices NYC
• Hearing Voices USA
• Howie the Harp Advocacy Center
• Icarus Project NYC
• Indiana Disability Rights
• Indiana Statewide Independent Living Council
• Inside Our Minds
• ISPS-US
• Jews for Racial and Economic Justice
• Keep the Promise Coalition
• Kentucky Protection and Advocacy
• Kiva Centers
• Mad Love Underground
• Michigan Protection & Advocacy Service, Inc.
• National Council on Independent Living
• National Disability Rights Network
• National Health Law Program
• Native American Disability Law Center
• New York City Peer Workforce Coalition
• North Dakota Protection & Advocacy Project
• Oklahoma Disability Law Center
• Oregon Consumer Survivor Coalition
• Prison Writes
• Psychotherapy Action Network
• Samadhi NY
• The Coelho Center for Disability Law, Policy and Innovation
• The National Association for Rights Protection and Advocacy (NARPA)
• The National Association for Rural Mental Health (NARMH)
• The National Association of County Behavioral Health and Developmental Disability Directors (NACBHDD)
• Trans Folx Fighting Eating Disorders
• Utah Disability Law Center
• Western Massachusetts Recovery and Learning Community
• Western Mutual Aid Peer Support Collaborative

Individuals:

• Kris Anderson, Peer Advisory Councils Coordinator, Oregon State Hospital
• Steve Coe, Policy Advocate
• Larry Davidson, Professor of Psychiatry and Director, Program for Recovery and Community Health, School of Medicine, Yale University
• Patricia Deegan, Disability Rights Advocate, Psychologist and Researcher
• Dorothy Dundas, Survivor of Psychiatric Atrocities
• LD Green, Professor of English, Los Medanos College, Co-editor, We’ve Been Too Patient: Voices from Radical Mental Health
• Ginger A. Hoffman, Ph.D., Ph.D., Associate Professor of Philosophy, Saint Joseph’s University
• Bradley Lewis, Associate Professor, Gallatin School of Individualized Study, New York University
• Vesper Judith Moore, Psychiatric Survivor & Mad Activist
• Norbert A. Wetzel, Th.D., NJ Psychologist, Princeton Family Institute
• Holly Weiss, NYS Dept of Health and Mental Hygiene, Consumer Advisory Board
• Phil Yanos, Director of Clinical Training, Clinical Psychology Training Program, John Jay College Of Criminal Justice, City University of New York

If you’re interested in signing the letter, or for press inquiries, please reach out to contact@idha-nyc.org

UPDATE: On Friday, May 8th, we received the below reply to our open letter:

To the IDHA and all those who signed the open letter regarding the film Bedlam:

Thank you for reaching out to us regarding Bedlam, and for the work that you do every day in the area of mental health. We appreciate your perspective and agree that more national conversations around mental health topics are necessary, and that a variety of voices and perspectives should be reflected. Our goal with Bedlam was to bring additional awareness to the mental health crisis through the personal family story of one filmmaker who, as a psychiatrist, wanted to share his perspective. As you point out, no one film can include every perspective. We believe that this film serves as a powerful entry point for the topic, and in its promotion we’ve produced more than 80 community screenings that created conversations nationwide about a wide variety of perspectives and points of view that we hope will lead to much-needed solutions to this crisis. We applaud your call to action for ex-patients, survivors, and formerly incarcerated individuals to tell their stories, and to keep this important conversation going.

ITVS has an Open Call that provides documentary funding for artists and we encourage you to submit projects for consideration.”

-Kenneth Paul Rosenberg MD, Director of Bedlam, and Lois Vossen, Executive Producer of Independent Lens on PBS