Herschel Hardin, December 9, 2021
Third and last in a series.
In writing recently about innovation by family members of people diagnosed with mental illness, I suddenly got a fix on some continent-wide, history-changing cases for which family members were responsible.
One such case was the creation of the National Alliance on Mental Illness (NAMI) in the U.S. and the parallel establishment of schizophrenia societies in Canada. Another was the later establishment of the Treatment Advocacy Center in the U.S.
I had been so immersed in their scene and the details of the issues they were concerned with that I hadn’t realized, except now standing back, how remarkable they were and how much they did, in fact, actually change history.
NAMI was founded in 1979 by a couple of mothers in Madison, Wisconsin who both had sons diagnosed with schizophrenia and were tired of being blamed for their sons’ mental illness. They were also unhappy with the lack of services available and of treatment of those with a serious mental illness. The initiative began as a proverbial grassroots group, but by force of example expanded relatively quickly into a national organization with state and local affiliates across the country.
Similar organizations sprang up in Canada, beginning with the Ontario Friends of Schizophrenics, also in 1979, in that case led by the father of someone with schizophrenia. Other Canadian groups, including what is now the B.C. Schizophrenia Society (BCSS), were formed in all the other provinces not too long after, also through grassroots commitment and energy by family members.
The North Shore Schizophrenia Society (NSSS), the organization my wife, Marguerite, and I were mostly involved with, was a part of that current.
Collectively, they did two profound things. First, they took schizophrenia and other serious mental illness out of the closet. Secondly, in fighting against and debunking the notion that bad parenting, especially by mothers, was responsible for schizophrenia, they pushed the psychiatric community into properly acknowledging that serious mental illness was a biological illness of the brain.
“So what?” you might say, “Everybody these days talks about mental illness, and nobody with any sense today would blame mothers for a child’s schizophrenia.” That may be true, but it wasn’t so in the 1970s and 1980s. The initiatives described above, undertaken by family members, changed the world, metaphorically speaking. We owe much of the enlightenment on mental illness to them. It helped that they knew what they were talking about, from first-hand experience.
The Treatment Advocacy Center (TAC), in the U.S., came later, established in 1998 by E. Fuller Torrey, a brilliant and courageous psychiatrist who had a sister with severe schizophrenia. TAC’s mission was to bring treatment to the most seriously ill who, because of their illness, didn’t recognize they were ill, a phenomenon known clinically as anosognosia. All too often, those with serious mental illness would be left to languish. The use of involuntary admission in the U.S., what the Americans call “civil commitment,” had been severely restricted, even where it would have been appropriate and was badly needed, and the number of psychiatric acute-care beds was grossly cut back. This led to the scandal of crowds of disoriented mentally ill living in the streets in cities like New York, Los Angeles and Washington, together with all the suffering and tragedy, like suicide, that went with it.
If you saw the movie The Soloist, and remember the Los Angeles street scenes, you’ll know what I’m referring to.
TAC eventually placed priority on what they called Assisted Outpatient Treatment (AOT) – court-ordered treatment plans for those seriously ill meeting certain conditions (for example, prior hospitalizations, stays in jail, or acts or threats of serious violent behaviour) because of non-compliance with treatment. Accept a treatment program for your illness and adhere to it, the court would instruct, or go to jail for your offence or return to hospital, as the case may be. AOT, then, is a form of community treatment order, where treatment is mandated but the patient can live in the community.
In a relatively short span of years, TAC managed to get AOT legislation passed in almost every state of the union – they’re now up to 47 out of 50 – a remarkable achievement.
The positive results, meanwhile, have been dramatic in virtually every category: hospitalizations, incidence of arrests, incarceration rates, violent behaviour, homeless nights, illegal substance use, and so on. In New York State, for example, hospitalizations of the applicable cohort went down 77% and incarceration rates down 87%.
(B.C., incidentally, has long had a community treatment order of its own, called “extended leave,” implemented on stabilization and discharge from acute care.)
A parallel advocacy organization in the U.S., mentalillnesspolicy.org, also sprang up in this period, led by a singular advocate and speaker, D.J. Jaffe, who had been involved in the formation of TAC as well.
I had personal connections with the American organizations. For years I taught NAMI’s peer educational course, Family-to-Family, and was representative for the course in B.C. (It’s currently provided by NSSS’s successor, Pathways Serious Mental Illness, in the North Shore, Sea to Sky, Tri-Cities, and Vancouver, and, being taught now via Zoom, to others in the province.)
Because of a bellwether article I wrote for the Vancouver Sun in 1993 on involuntary admission, “Uncivil Liberties,” which made its way into the U.S. notwithstanding its BC references, I also had links to TAC and mentalilllnesspolicy.org.
It’s another reason why I’ve followed the work of those latter two organizations closely.
Please don’t assume, though, that my kudos for them is consequently exaggerated. The battle for providing treatment to those without insight, because of their illness, was particularly tough in the U.S., and continues to be tough. (For those interested in delving into the history of it, you could do worse than picking up a copy of Madness in the Streets: How Psychiatry and the Law Abandoned the Mentally ill, a book by Real Jean Isaac and Virginia Armat, which first appeared in 1990.)
As examples of innovation go, the history of these organizations is inspiring.
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