A friend told me that she thought the term “psychiatric survivor” was widely misunderstood, that it was much more than a political label and that people who self identified that way were normally unfairly marginalized and dismissed as extremists who had little of value to say. “Psychiatric survivors” were she said unfairly dismissed as people who were against everything and unwilling to work with anyone who did not agree with them about everything.
She said it was more about identity than ideology and we talked for a while that night what it meant for her…. A couple of nights later I was part of a phone conversation with Sarah Knutson, Marty Felker, and Sharon Cretsinger. The same subject came up and some of the same points were made. Much of the rest of this post springs from that conversation.
I have a friend who is a remarkably good person. Life has been lucky for him. He has not known distress in the same way so many other people have.
We were talking about recovery and I read him part of something I had wrote a long time ago. “…. Do good things every day that build your strength and capability. Try to anticipate and prevent any problems you can. Cope with what you can’t prevent. Survive what you can’t cope with or control …”
He wondered why for so many people life was so hard and seemed to think people should just be more focused and try harder. I told him that he didn’t know very much about survival.
For some people life is a lot about survival. It is not about education or skills although that may be very important. It is not about motivation or support although that may be very important. As much as anything else it is about tragedy. Bad things happen to people who don’t cause those bad things to happen. Bad things happen that people have little or no control over. For many people bad things impact what they think of themselves, of others, of life and many other things.
Sometimes life is not simply changing life events but fighting like hell to survive the assault of life events on you. For some people survival is about saving themselves in circumstances that conspire to make that seem impossible. It is about trying to survive with some degree of integrity and capability the injustices that seem to determine the parameters of life.
For some people mental health issues and their exposure to the mental health system is about survival more than anything else.
Distress and difficulty are very real. Many things may seem out of control or very difficult. The “treatment” they are offered may add to injury. The short term side effects of many drugs and their long term consequences may be life altering and impossible to live with. Even if you can live with them they often don’t make it easier to live. For many people they don’t help nearly as well as advertised or hoped for. For many people the experience of inpatient treatment is demeaning and traumatic. They are asked to accept a definition of themselves that says life will never be better, that their “disease” will be chronic and life long. They are told they can never have, will never have what others have. And they are told to be “realistic” and accept a life always limited.
But the issue of survival goes far past these things. It is not just the experience of distress or treatments that may make things worse that must be survived but the social experience of what all that means. The labels attached to you matter. They have impact. Discrimination and prejudice are real. Psychiatric diagnosis is not a simple morally neutral medical act. It consigns you to a social group and standing. If you belong to that group you are more likely than other people to:
Face issues of homelessness…
Lack access to the help you need or want….
Have a history of lousy medical care…..
Die considerably earlier than the larger population….
Have your civil rights be abridged or denied….
Plus many other things…..
To survive what it means to be “mentally ill” in this society with any kind of integrity, belief in themselves, hope for the future, and recognition of their own strengths and abilities requires a daily courage and commitment that even survivors don’t always know they have or give themselves credit for.
“Psychiatric survivors ” are often dismissed as people chronically complaining about what the system has done to them. It is so much more than that. It is about courage and victory and making real better life. It is about, in a very real sense something good happening.
Many people know what it means for life to be about survival. In tragedy sometimes we find the capacity to reach out to others and to support and be supported and to find out even in the worst of circumstances more is possible, that we can survive and find better life.
(Psychiatric survivor is also a political term but that is the subject for another post.)