The art of playing the long game to win—even when it’s frustratingly slow—is a lesson the mental health community can offer to others hoping for big reforms in America.
This year has brought much good news for long-time followers of mental health reform.
President Biden’s American Rescue Plan included billions for the training of mental health professionals, and community-based programs. ARP also includes $122 billion for teachers and students suffering from the pandemic’s imposition of isolation stress, and untoward family challenges. And the 45 percent increase in calls to 988—the new mental health and suicide preventions crisis line—confirms a need.
The proposals the Biden administration is enacting might seem like they were inevitable, but that was hardly the case 50 years ago when activists were challenging state commitment laws, forced treatments with institutional warehousing, or laws permitting overt discrimination. None of these changes would be possible without decades of work by those in the activist community.
Yes: decades. The simple truth is that the changes were incremental. Each step enlisted more people, built a bigger coalition and re-wrote the culture’s expectations for what was acceptable—and possible—for people experiencing mental health crises. The art of playing the long game to win—even when it’s a frustratingly slow pace—is a lesson the mental health community can offer to others hoping for big reforms in America.
The activist movement really got its footing in the late 1960s and early ’70s, coming on the heels of President John F. Kennedy’s pursuit of community-based services instead of confining those with a diagnosis to hospitals. His assassination meant that the government’s plan to end warehousing in state institutions lost a powerful cheerleader. President Lyndon B. Johnson then opted to divert the funds earmarked for these social programs to fight a war in Vietnam.
Years later, when mental health reform was again on the federal agenda, Jimmy Carter and Ronald Reagan repeated this seesaw pattern: President Carter signed the 1980 Mental Health Systems Act—which allocated $500 million for its implementation. Months later, newly-inaugurated President Reagan revoked it by purposefully reducing federal responsibilities toward people with disabilities or mental illness.
But while party politics played on a national stage, on the local level people with lived experience started speaking up. These people criticized the traditional service agencies where treatments too often resembled the vapid regimentation found in state hospitals: meaningless workshops, harsh medication management and a blaring television to fill space in the day.
While government bureaucrats and well-intentioned professionals pondered what to do, ex-patients were busy advancing the philosophy of self-help. They founded inclusive drop-in centers, offered respite for people with nowhere else to turn, and developed new housing options. Their priorities included making sure people with mental health issues had a choice—and a voice—in their treatment, eliminating coercion at all points in the process. Patient activists focused on bringing affected adults and children into closer human relationships, in order to help them realize they could build a life through their strengths rather than being defined by their diagnosis.
The activists who helped their peers restart life after hospital discharges were as diverse as the communities they came from.
In the 1970s, Judi Chamberlin, a pioneer in the mental patients’ liberation movement, opened the Ruby Rogers Advocacy and Drop-In Center in the Boston suburb of Somerville.
A decade later, in Baltimore, Mike Finkle and Peg McClusker turned the basement of an old house into On Our Own, a drop-in center which was open on weekends and evenings when other services were not.
And in Oakland, Calif., Howie “The Harp” Geld used an empty storefront for mutual aid through the Oakland Independence Support Center (OISC). The space was intentionally designed for unhoused people to be able to receive mail, take a shower, grab a donut or find a friend.
Next, activists worked to build support, both for modifying the laws permitting forced treatment and creating a popular movement demanding rights that included people with disabilities.
In San Francisco, ex-patients formed a collective in 1972 to publish a counter-culture newsletter, Madness Network News, which grew into a journal with a national distribution.
From 1972-1984, this group also organized the Conference on Human Rights and Psychiatric Oppression.
In those same years, Paul Dorfner of the Vermont Liberation Organization, thought that advances in telecommunications could help promote an agenda for action. In 1984 he built a teleconferencing system linking former patients in 28 states on monthly planning calls.
Some of the initiatives that now seem to have arrived fully-formed have been building and evolving for decades.
It was becoming impossible to ignore ex-patients—despite the medical world saying they could not thrive outside the existing (hospitals and medication) service model. But in fact, that’s exactly what these individuals were doing carefully, systematically and irrevocably.
When a collective published the how-to manual Reaching Across: Mental Health Clients Helping Each Other in 1987, Beecher White, who had opened Borderline Project in Raleigh, N.C., told the editors, “People think we could not possibly have anything without lots of professional supervision, so I just smile politely and listen to them and just keep on trying to build my amorphous get-together for the psychiatrically oppressed.”
His was one of the 100 self-help groups health activists had created in the 15 years since Howie the Harp’s Mental Patient’s Liberation Project opened a “crash pad and political action headquarters” on the Bowery in New York City.
Some of the initiatives that now seem to have arrived fully-formed have been building and evolving for decades. Campaigns to decriminalize mental illness emerged in the ’90s, emboldened by Judge Ginger Lerner-Wren’s understanding of restorative justice and the nation’s first mental health court in Broward County, Fla.
Efforts to stem the injury or death of mentally ill people by the police began in the late ’80s, with the creation in Memphis of the now-proven Crisis Intervention Training (CIT) program.
In Eugene, Ore., the White Bird Clinic and local law enforcement built CAHOOTS (Crisis Assistance Helping Out On The Streets) in 1989, to dispatch people with mental health training, including peers, to the scene of a crisis and divert them from hospitals or jails. In those same years, programs for peer training opened in New York, Georgia and Arizona. It was a fertile time.
By the time President George H. W. Bush signed the Americans with Disability Act in 1990, former patients reached a new level of influence: Some worked in state government. This proved false the presumptions that peers couldn’t inform policy and decision-making.
In 1995, activists successfully lobbied the Center for Mental Health Services—part of the Substance Abuse and Mental Health Services Administration—to hire a former patient in this agency which, despite vast influence, had lacked a consumer’s voice.
Each of these steps paved the way for the game-changing 1999 report Mental Health: A Report of the Surgeon General, which affirmed that recovery for people with mental illness is real. This was a huge victory for the activists who had worked from the very start of the movement, validating what they had been fighting for: autonomy and agency over their own treatment and lives. This reset the activist agenda in the U.S. and Canada.
In 1978, activist Judi Chamberlain popularized the phrase, “Nothing about us, without us.” It’s been a guiding light for those in the mental health reform movement, and can act as such for those hoping to make other big sweeping cultural and social changes today, and in the near future.
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