From Bitter Medicine:

EPILOGUE

My brother and mother still share a place. Ten years ago they decided they had to move. The grey stuccoed home where we grew up hemorrhaged old memories, and, as small as it was, it proved too much house for them to manage. Where the lawn wasn’t burnt brown from underwatering, it grew in swaying, uncut thickets. Inside the house, things gathered. Magazines accumulated in teetering stacks. The shelves above the coat rack strained under the weight of hats from every possible historical period of hat development.

Clutter began to take over and hedge Mom and Liv in. Finally, they relocated to a condominium, where they have lived together since, providing equal measures of support, encouragement, and irritation for each other.

Over their many years together, Liv and my mother have developed their complementary strengths. My mother’s eyesight is bad, so she doesn’t drive much anymore. My brother deals with the car instead. My brother is a relentless gatherer, throwing nothing away. My mother is a whirlwind of disposal, organizing and thrusting all matter into the recycling box, the newspaper bag, or the garbage bin.

When my mother’s hip gave out, Liv helped her get up and about until she could get an implant. After Liv’s diabetic attack, my mother ensured he took his daily tests.

They offer a kind of support that can’t be found anywhere else, and occasionally they drive each other around the bend.

But being part of a family isn’t enough.

Although the focus of this book has been on our family’s experience, it’s impossible to receive everything you require within a single household. Over the decades, Liv has cautiously developed an intricate, extended network that offers him guidance and support. Much of that network is connected to the not-for-profits that operate from inner-city locations.

Scan the fabric of each major city in North America and you will discover a similar development. And if you look carefully, you will realize the institutionalization that was the norm in the 1960s hasn’t disappeared. It has only been outsourced on a diminished budget.

The mental health ghetto sprawls. It’s made up of a network that exists primarily within the core of major cities across the continent, but the geography alters slightly according to the season, and the transience of the population—and it has permeable boundaries. Some people are connected through the support groups they attend. Many people with mental illness are on government assistance and live in subsidized housing. A significant portion lives on the streets. And within the various segments, there is movement, flux, and change. Individuals return to homes occasionally, or return to hospitals, or sometimes return to prison.

It’s worth reflecting a moment upon the significance of the imprisoned population because it represents a considerable demographic. A recent study indicated that the number of people in American jails with mental illness has grown so drastically over the past decades that the U.S. prison system now constitutes the single-largest mental health care provider in America.

The situation in Canada is little better. In a recent interview about the increasing number of psychiatric patients in prisons across the country, Val Villeneuve, director of forensic psychiatry services in Southern Alberta, offered: “What we’re seeing is the criminalization of the mentally ill.”

Which only confirmed comments made by the Coalition for Appropriate Care and Treatment—a Canadian mental health lobby group—about trends in North America.

“In some jurisdictions more than 95% of beds for treating mental illness in provincial or state hospitals have closed. While the reasons are contentious, few disagree that deinstitutionalization has been a major policy failure.… In part this failure is the result of a reluctance to pay for the services needed to provide treatment and support in the community. But there has also been a failure to recognize the extent of the functional deficits caused by serious mental illness and a consequent failure to provide appropriate types of services to prevent people from relapsing. The result is that many individuals run foul of the law—often because of minor crimes. With so few hospital beds available to provide secure treatment these individuals end up in jail.”

Everyone who is part of the mental health community knows someone who has spent time in prison. And it becomes, for them, a kind of cautionary tale. It’s what keeps them silent. It’s what ensures that they don’t complain. They know what can happen if things go awry with their treatment.

The mental health ghetto exists, like any ghetto exists, because it serves the dominant culture’s desire to segregate a group and it simultaneously fills critical needs of that particular client community.

My brother has friends he sees regularly who are part of that community. And he has access to clinics and services, and receives a kind of understanding within the ghetto that he can’t get elsewhere.

He plays pool with one group that meets weekly in the inner city. He slips past panhandlers to attend art classes at Self-Help, where he sketches and sculpts. A few blocks over, Opportunity Works offers counselling, and on Thursdays he meets with the Circle of Friends at the Canadian Mental Health Association. He moves in and out, meeting with his peers because they understand his situation in a way that the rest of society—including my family and me—often don’t.

These organizations all survive on the thinnest of margins. After Liv’s art class failed to receive government funding one year, it was cancelled. The following year a fundraiser attracted interest from a sponsor and rescued the program. The vagaries of the economy have serious consequences for the sustainability of the smaller agencies, and financial support remains unreliable. And of course, these agencies are all overwhelmed by the multiple needs presented by their homeless clientele.

I remember a rather sad conversation I had with a colleague a while back; she also has a brother with schizophrenia, about the same age as Liv. She told me how difficult it had been for her to provide care for her brother, how helpless she had felt. Delusional and paranoid, he had grown suspicious of treatment. Increasingly he struggled at the edges of society. She tried to maintain contact, but it’s a big city. One day he simply vanished. No one knew where he’d gone. She spent years trying to find him, but he never turned up. She didn’t know for certain whether he was alive or dead, although she felt it was more likely the latter.

The system is a mess. Two-thirds of those with mental illness never receive treatment. Families lack the assistance, guidance, and training required to respond to the kinds of situations they encounter. Mental illness is mostly misunderstood by the public, and critical issues of mental illness are mishandled at nearly every level of the health care system. What’s to be done?

To start with, those in the highest levels of our health care system must stop shutting their eyes, pretending that nothing is wrong, pretending that psychiatric services are receiving adequate support. They’re not. Above all, both federal and provincial governments must finally demonstrate leadership and behave in a manner that communicates to the public that mental illness isn’t a lapse of character, isn’t a product of degenerate morality, isn’t something that if swept onto our streets or concealed behind bars will simply disappear. It hasn’t, it won’t, and we all deserve better.

Copyright © Clem Martini and Olivier Martini, 2010