Susan Austin
"When I was diagnosed with schizophrenia as a teenager, I was told I would have this disease all my life, I would need to take medication all the time and I might just be able to cope. Recovery has been about reclaiming my future and asserting that I am a person, not an illness", Patricia Deegan told the Partnerships Toward Recovery Mental Health Conference.
Organised by the peak body of mental health non-government organisations in Victoria and the Richmond Fellowship Asia-Pacific, some 900 people attended the April 26-28 conference in Melbourne. The participants included people with mental illnesses who access services, carers, clinicians, community organisations, academics and policy makers.
While psychiatric treatments have come a long way from The Alleged Lunatic Friends Society, which in the 1830s struggled for reforms in the United Kingdom, Deegan said that much more was needed. Deegan, the keynote speaker, is an activist in the "consumer" (the popular term for people with mental illness who access services)/survivor/ex-patient movement in the United States. She is a self-described "radical activist", a lesbian, married in Massachusetts to a woman who also has psychiatric disabilities and is a community organiser, and believes that health workers must accept that people with mental illness should be "the architects of the solution".
"We live in an age where there is incredible emphasis on pharmaceutical methods of affecting brain biochemistry", Deegan said. But instead of seeing "compliance with medication" as the goal, clinicians need to listen to consumers' concerns about side-effects and ensure that psychiatric medications complement, not impede, these activities. Deegan also criticised what she called "medical paternalism", and made a convincing argument for a more collaborative approach between clinicians, psychiatrists and consumers by giving examples of how school, work, exercise, and peer support helped recovery.
Deegan told Green Left Weekly that the modern day disability rights movement is "based on a recognition that what's truly disabling is not any impairment in the individual, but the obstacles that prevent us from participating fully as individuals. "For example, if I'm in a wheelchair, having [to negotiate] steps up to a polling booth without a ramp is an obstacle to me being able to exercise my democratic right to vote. Is the solution to get me to walk, or to build a ramp? What's really disabling for me? The stairs. The goal is not to change us, but to remove the obstacles."
The disability rights movement in the US is very broad and active, Deegan told Green Left. "In the 1980s, the disability rights organisations and our supporters formed a coalition. There are 43 million people with disabilities in the US. We are a large voting block. We increased our profile in Washington and have been able to secure a landmark piece of civil rights legalisation — Americans with Disabilities Act, 1990 — which protects us against discrimination. However, the government has tried to destroy our coalition, objecting to our inclusion of people who are HIV+ and people with substance use disorders. But we wouldn't sacrifice one of our members."
Deegan told Green Left that the movement helps bring about changes using direct action, civil disobedience, lobbying, judicial reform as well as working inside organisations. She helped lead a national campaign of ex-patients to restore the gravestones in more than 200 state hospital cemeteries (some of which were being turned into golf courses). Deegan has also helped collect the oral histories of survivors of mental institutions, including African American and Native Americans who were kept in segregated asylums.
People with psychiatric disabilities need to have access to work opportunities, dental care, a choice of housing, decent incomes and accessible transport. But that is increasingly difficult today, says Deegan, in what she describes as "a society that is intent on death-taking". "People with psychiatric disabilities in the US die on average eight-10 years younger than those without, and it's not because they kill themselves. It's because of the poverty, the violence and the lack of quality health care."
So is mental illness a class issue? "It's not that simple, but people with mental illness experience enforced impoverishment. If we were able to stop the sexual abuse of children and violence against women, we wouldn't be seeing the same rates of mental illness", Deegan added.
Deegan doesn't see a role for acute psychiatric wards as they currently function. Yes, when people are in an "acute state", they do need "sanctuary", she said, but "not places where they are controlled, restrained and forcibly medicated" such as when people are given an injection against their will. "If people are becoming aggressive, there are many different non-violent ways of dealing [with that], but staff aren't trained in these methods. Countering violence with violence is not the solution."
Asked what she would most want to change about the current system, Deegan replied that funding should go directly to the patient to allow people with the illness to supervise their own care, instead of the programs. "This would empower them with the economic clout and purchasing power to drive the evolution of the service system."
But would this really shake up the system? "Yes. The systems of today support what I call 'handicaptivity'. We need systematic transformation. Instead of measuring satisfaction with mental health services, which is too low a standard, we need to evaluate quality of life based on universal standards of freedom, friendship and participation in economic and cultural life."
Deegan cites an example. "In the Florida Self-Directed Care Project, 140 people with psychiatric disabilities were given control of the public dollars allocated for their mental health care. They developed individual budgets as part of their recovery plan, so the money was made accountable. Not only did these people's quality of life improve with less hospitalisations, less jail time and less symptoms, but they were also going back to school and work. People naturally gravitated away from the segregated mental health settings into integrated settings in the community."
[For more information go to <http://www.patdeegan.com>.]
From Green Left Weekly, May 24, 2006.
Visit the Green Left Weekly home page.