Below is a guest reading list by journalist Genna Buck. Buck wrote our recent Longreads Member Pick, “Autistic and Searching for a Home, ” published by Montreal’s Maisonneuve magazine. She was generous enough to share this follow-up reading list—one story, one documentary, and three books—on what it’s like for those who suffer from mental illness, and for the families that care for them.
* * *
This New York Times op-ed by Elyn Saks is essential reading for people who want to understand the lived experience of mental illness. She also has a memoir called The Center Cannot Hold: My Journey Through Madness that is worth checking out. Saks has severe schizophrenia. She’s also a professor of law and of psychiatry at the University of California. Her illness isn’t gone, but it is being managed.
She says she has achieved so much because she has a large network of family and friends who devoted significant time and energy to supporting her recovery, and expensive therapy from a world-class psychiatrist; daily when necessary.
To provide that for everyone who needs it would carry an unfathomable cost, but Saks’ story does show that there is a huge amount of unlocked potential in the lives of mentally ill people who aren’t getting the help they need.
In this gutting pair of documentaries (Part 1 above; Part 2 here) by Ionna Roumeliotis, a reporter meets two Canadian families struggling to care for disabled adults with high needs. This is a common to families dealing with severe mental illness and with intellectual disability. When it comes to things like autism, the lines between those designations blurs. (The legal system uses the generic term “mental disorder” for both).
All the provincial governments espouse care in the community for people with intellectual and behavioural issues. In reality, a huge proportion of those people end up a) in psychiatric wards b) in nursing homes prematurely c) in the correctional system d) crowding respite care centres or e) staying indefinitely in the family home.
This book is one of the founding documents in the deinstitutionalization movement. Foucault explores how, at the dawn on the modern period, huge numbers of marginalized people (ranging from the disabled to the mentally ill to the poor or unemployed to prostitutes to blasphemers, ad infinitum) were institutionalized in a process he calls “The Great Confinement.” A characteristic of this shift was the conflation of mental disorder with moral disorder, and the idea that madness is the opposite of rationality (this was different, he argues, than earlier cultures who believed mentally ill people had mystical knowledge or wisdom that other people did not possess.)
Foucault’s implication that mental disorders are a sort of difference instead of a defect is widely influential in the disability rights and community living movements. And his ideas overall contributed to the push to guarantee human rights for the disabled as well as to the dismantling of the institutional system without a clear plan for what should come next.
Fuller Torrey is one of the authors of the backlash against deinstitutionalization. Out of the Shadows is a polemic endorsing a moderate return to 20th Century mental healthcare (it’s written from an American perspective but is useful nonetheless). Torrey wants to see more involuntary commitment of people with severe mental illness and thinks health authorities should stop pouring money into programs and services for people he calls “the worried well.” As a psychiatrist his ideas are somewhat out of the mainstream, but his policy stances made a huge splash in the 90s. Many people still endorse his views, sometimes without necessarily knowing who he is.
This book exhaustively covers the various approaches to mental illness taken in Canada from colonial times onward—from using mental asylums as tourist attractions to the first LSD experiments conducted in Western Canada. We’ve done some crazy things over the years.