CONSUMER ACTIVISM - WHY?
I've dedicated the greater part of my life for over twenty years as an activist in the mental health field. I've occasionally been asked, "why?"
About twenty years ago, I'd been hospitalized several times for suicide attempts. My initial diagnosis was schizophrenia but, that changed each time I saw a different doc or therapist. The diagnosis also changed depending upon what the insurance companies were likely to pay for at any given time. I'd taken and tried most of the psychiatric drugs available at the time. I'd been in and out of day treatment several times.
The day treatment I was in at the time was changing. They were going to create two new levels. One level would be for the "high functioning" and the other would be a longer term, more elementary program for the more hopeless cases who were designated "low functioning." I fell into the latter group.
Of course, in every hospital and in every treatment program in which I'd participated, there was the same old worn out standard fare. They would have groups which included stress management, assertiveness, recreational therapy (RT) also known as play time and of course, occupational therapy (OT) which is another name for ceramics and other useless arts and crafts sorts of activities.
One day, I'd grown bored with hearing the same thing repeated in eight week cycles and so, as assertiveness group was beginning, I challenged the therapist. I claimed that I could run the group as well or better than they could. Naturally, this upset the poor fellow and in his flabbergasted state, he accepted my challenge. He haughtily assumed that I'd fail miserably and thereby be set in my proper place.
I approached the front of the room with confidence and calmly proceeded to articulate a method of understand assertiveness which was far in advance of that which he was going to teach. Flustered, he got up in a huff and left the room to the cheers of the dozen or so of my fellow compatriots who were present.
From that day forth, I was known as "treatment resistant" and "low functioning" among the treatment staff but, I was elevated to a sort of informal "senior client" status amongst my friends.
Unbeknown to the staff, we clients talk a lot. We talked before groups, we talked after groups, we talked before day treatment, we talked after day treatment, we talked during lunch. Of course the staff were not aware of this because they were busy in their offices doing staff stuff. We especially loved to talk at lunch, when the staff would disappear like cockroaches when you turn a light on in the kitchen. While staff would climb into their nice cars, we'd sit around and eat our meager bag lunches and talk together.
We talked about everything. We talked about our families. We talked about the staff. We compared which drugs we were on. We compared docs and hospitals. We talked about who we had beeen before we were mental patients and some of us even dared to still dream and hope for a future.
One friend named Mark Smollen had a drinking problem. He was also on some very heavy duty neuroleptic drugs. Using all the influence I could muster I warned Mark of the dangers of doing both the drugs and alcohol. With the added influence of the others in the program, Mark stopped drinking.
Staff had their own impression of Mark. Mark was bored with day treatment. He'd sit in the back of the room with his arms folded across his chest and never say a word. He was labeled "low functioning" also.
Mark was very alive and animated among us mental patients. He'd come in every day and boast that he had gone another day without a beer. Mark was especially eager to let us know on Monday's that he'd managed to go a whole weekend without a drink. We were very proud of Mark. We saw his great sense of humor and his enthusiasm for life. Staff on the other hand saw none of this. All they saw was the same old Mark, sitting in the back of the room with his arms folded across his chest.
At my weekly appointment with my therapist, I was told of a brand new program to train consumers to work as case manager aides. She asked if I was interested. I could barely contain my exuberance. Of course I was interested. I'd be interested in anything to get me out of the drudgery of day treatment. The next day, I applied and was accepted to this revolutionary program. It was the first of it's kind in the country.
I lept into the program with all the enthusiasm I could muster. I never looked back at the day treatment program. HARUMPH! Call me "low functioning" would they? I'd show them!
Toward the end of the eight week training program, I got a call from a friend in the day treatment program. They informed me that Mark was dead. I asked what happened.
It seemed that Mark got despondent about being placed in the "low functioning" group and started to drink again. He grew more and more desperate. He went to the staff and asked for help. He begged them to intervene. They just sort of chuckled at him. They hadn't seen him get better without the booze and they hadn't seen his deterioration when he returned to drinking. All they saw and knew of Mark was that he sat in the groups, in the back of the room, with his arms folded across his chest, in silence.
Mark had tried desperately to get ahold of me in his final week of life. He felt that because I'd once stood up to the staff, I could make them listen to his pleas for help. Finally, in one last act of desperation, he went home, downed a twelve pack and pulled the trigger, blowing his brains out.
I was devastated. I felt consumed with anger at the staff. I wanted to grab them all by the throat and shake some sense into them. But, with time, my anger changed. I also grew angry with the other clients. Why hadn't they spoken up for Mark? For that matter, why couldn't Mark speak up loudly enough for himself? Mark's parents just wanted more drugs for Mark. They didn't understand either.
Finally, it became clearer to me. I knew that I must work to help clients have their own voice. Not just some weak squeaky whimper but a strong and loud and clear voice. This became my calling as an advocate. From the day I learned of Mark's death to this day, my motto has been, "NO MORE MARK'S!"
I fight as an advocate and an activist to shake the mental patients out of their complacency and to strongly speak out with their own voice. I fight as an advocate and an activist to shake the mental health professionals out of their complacency and to know that we have a right to and MUST speak and be heard. I fight as an advocate and an activist to shake parents out of their complacency and to let them know that whatever their interest in us or the public mental health system, our interest is even stronger because for us, it's our very lives which are at stake.
I have met, spoken with, worked with, helped and interacted with literally thousands of mental patients and former mental patients over the years. The thing that keeps me going, despite five heart attacks is, that I'd rather someone pick up a phone and give a call than pick up a gun and pull a trigger.
Forcing more drugs down our throats isn't gonna cut it. It will not make the system more responsive to us. Collaborating with AMI isn't gonna cut it. They may be concerned family but, it's not their damned lives which are at stake. We have to reach out to each other and help those who are still trapped by the system and who are desperate for real human contact and real ways of coping with life. Let's try and reach them before they get so desperate that they...