In recounting the history of mental health treatment and psychosis, the dominant voices often belong to academics and “professional experts,” marginalizing the perspectives of service users with lived experience of psychosis and mental health services. This omission obscures the long and rich history of service user-led social movements which have bravely challenged psychiatric authority for decades.
In a new article, Berta Britz and Nev Jones, themselves service users, argue that if we do not recenter and uplift the voices of those with lived experience, we will never see transformative change in mental health treatment and policy.
“When those who have been most silenced meet in common thresholds, truly transformative change will happen,” Britz and Jones write. “The systems and people closest to the top and next layers down won’t conceive of new possibilities until their eyes, hearts, and minds open to the co-creations of those of us with ‘lived experience,’ we who have been classified, objectified, and harmed.”
For decades, psychiatry has wielded the power to diagnose, institutionalize, and subject service users to treatments, including medication and electroconvulsive therapy (ECT), frequently against their will. Even when this critical side of history is told, it is still written by “professionals” and not from the first-person perspective of current and former service users.
Historically service users were silenced to the point that they resorted to communicating through hidden channels – such as the Madness Network News (MNN) — a widely circulated journal founded by two inpatients in a California State Mental Hospital. This communication platform was used to discuss unjust treatment experiences, organize social movements, and collectively resist psychiatric authority. (MNN maintains an active archive and blog at www.madnessnetworknews.com.)
In this new article, authors Berta Britz, a certified peer specialist, and Nev Jones, a University of Pittsburgh assistant professor, fuse their personal experiences with psychosis and archival resources from ‘underground newspapers’ like MNN to engage with this largely untold counter-history.
From the genesis of the Ex-Patients Movement in the 1960s-70s to modern activism addressing experiences traditionally labeled as psychosis, they recast the history of psychosis and mental health treatment through the lens of service users.
They contend that to root social justice in “policy, scholarship, and practice,” we must honor the “stories user/survivors tell—stories of trauma and voices…stories of abuse in psychiatric settings, or isolation and misrecognition,” asserting that these narratives “must be believed, engaged with, and acted on.”
The narratives of service users and psychiatric survivors that have emerged create a compelling counter-history:
Ex-Patient Movement (1960s -1970s)
Seen as a crucial shift toward more compassionate support for those with mental illness diagnoses, the Ex-Patient Movement was propelled by the signing of the Community Mental Health Act in 1963, which moved people from large psychiatric institutions to community-based mental healthcare.
The narrative often overlooks the proactive role service users played in instigating this change, as they sought to “change the archaic and repressive aspects of the psychiatric treatment centers” through initiatives like workshops where therapists could learn about the other side of madness from those who have experienced it.
In Madness Network News, service users discussed “trying to change the archaic and repressive aspects of the psychiatric treatment centers” through interventions such as service users holding “workshops for therapists and others to learn about the other side of madness from those who have been there.”
Contesting “Forced Chemotherapy (1970s – 1980s)
After the Community Mental Health Act (1963) ended long-term institutionalization, many ex-patients suffered the harmful side effects of prolonged use of psychiatric drugs and ECT.
A 1983 article by ex-patient activist Linda Ladew observed that “[phenothiazines] seriously diminish one’s intellectual effectiveness and severely compromise one’s emotional integrity. [Nevertheless] psychiatrists [argue that] deterioration is [simply] part of the natural history of schizophrenia.”
Similar conversations about the unwanted side effects of medications, along with comedy sketches and other ways to raise awareness, prompted many “ex-patients” to fight against the use of forced medication. This ultimately led to a major victory where forcible injections were outlawed – Judge Joseph Touro explained that:
“…subjecting a patient to the humiliation of being disrobed and then injected with drugs powerful enough to immobilize both body and mind is totally unreasonable by any standard.”
For years to come, this legal case served as the basis to fight other forms of forced treatment.
Deinstitutionalization and Reinstitutionalization (1980s-1990s)
During this period, ex-patient activist Howard Geld highlighted the significant leadership role of “educated” and middle-class individuals in ex-patient social movements. Unfortunately, this narrative underplays the detrimental impact of flawed government policies and discriminatory beliefs about ex-patients, many of whom became homeless and jobless.
Adding insights from her own experiences, Nev Jones writes that “the temptation is so often to look back at history and say, “wow, providers back then were so naïve, so racist, so ableist; we’re not that way anymore…But even in 2009, I was terminated from my graduate program under the premise that “someone like me” would never work, could never “repay student loans,” and that, therefore, program termination was “in my best interest.”
Race, Structural Racism, and Erasure (1970s – 1990s)
The use of psychiatry to enforce racism and oppress racial minority communities, particularly during the Civil Rights Movement, is another overlooked aspect of history. Psychiatrists diagnosed “protest psychosis” to institutionalize Black men and label them schizophrenic at the Ionia State Hospital for the Criminally Insane for protesting for freedom and human rights.
Berta Britz describes how she was also hospitalized for psychosis at a nearby location. However, she reflects that “Iona was used for social control. I – a white woman – was considered a less dangerous “schizophrenic” and was taken to a “therapeutic community” instead.
Despite this, Black and Brown ex-patients continued to engage in anti-racist organizing to call attention to psychiatry’s use of racist belief systems to control racial minorities. Luisah Teish, a Black feminist survivor activist, wrote in the Madness Network News:
“We know that if sanity is defined by white upper-middle-class standards, then we are in grave danger” and then emphasized that Blacks were at risk of being “lock[ed]…up.”
Power, cooptation, and user-led alternatives: Late 1970s – 2010s
In 1978, activist Judi Chamberlin championed mental healthcare led by peers—services provided by those with lived experiences of mental illness or psychosis.
Although peer-led services are often framed as progressive, service users argue that this is “superficial inclusion” because peers are forced to follow psychiatry’s beliefs about effective treatment rather than having their own input. In Berta’s reflection on her experience, she argues that peer specialists have little say in the design and implementation of services because those “in control of official resources” have the most power.
Contemporary Activism Focused on Experiences Traditionally Labelled as Psychosis
Contemporary activism reveals that the service user movement has not gone silent. One current effort includes the Hearing Voices Movement – which promotes alternative ways of understanding the experiences of those who hear voices. Other efforts center on the safe withdrawal and tapering of psychiatric drugs. Along with Mad In America, other forums – such as Madness Radio and Unapologetically Black Unicorns – work to rethink psychiatric care.
The academic writing on the history of mental health treatment and psychosis has erased the voices of service users and activists. Such silencing marginalizes or dismisses the experiences and work of activists and service users.
Furthermore, research on how to improve the use of service users in peer-led services and academic research continues to be important in contemporary activism. Uplifting service-user voices is vital because this history will shape how we understand the past and how we will proceed to the future. Articles such as this not only unmask the truth but also honor experiences from the past and empower current service users.
Britz, B., & Jones, N. (2023). Experiencing and treating ‘madness’ in the United States circa 1967–2022: Critical counter-histories. SSM – Mental Health, 100228. https://doi.org/10.1016/j.ssmmh.2023.100228 (Link)