Jay Mahler
Consumer Advocate and Former Consumer

Jay Mahler is a founder of consumer-led Mental Health Consumer Concerns in Contra Costa County, and he is the coordinator of the county's Office of Consumer Empowerment. Mahler experienced his first breakdown in the mid-1960s, when he was a student at U.C. Berkeley, organizing around free speech and civil rights.

I went six days or something without sleep and ended up having a nervous breakdown, and that was the start of 10 years in the mental health system. Five of those years were really horrendous. I was locked up against my will for months and months at a time, was given shock treatments against my will. At that time, people didn't even have rights. I didn't have a right to have visitors, to wear my own clothes, to make telephone calls. Of course, the worst part was the shock treatment, because during one part of it I was completely without memory. I mean I didn't know my name or who I was. It was very, very terrifying.

After a couple of years of going in and out of hospitals, I was given the diagnosis of chronic schizophrenia undifferentiated, which to me was like a death sentence, because at that time people who had that label or diagnosis believed they wouldn't recover. The best thing they could do was maintain and stabilize, and you would have to be on medications for the rest of your life. When I came home, I slept about 20 hours a day for over a year. I was on a tremendous amount of medication, and I had such a low self-concept. But over a period from 1966 to 1972, I went through a whole process of recovery...I started back to school, majored in psychology and studied other approaches that more validated my experience than the traditional medical model. Got a job, went to church, and I got with a very eclectic psychiatrist who got me involved in group therapy and with other people who had similar experiences.

For many of us, the consumer movement came out of the oppressive conditions in hospitals and the authoritarian medical model. That is what sort of happened in the '70s. Around the country, people were starting to connect with other people, and there were pockets of resistance and people validating each other's story.

In 1972, I got involved with the Eden District Health Committee [a group working to improve mental health services], and I was kind of the token consumer, and then in 1976, three of us who were former patients wanted to start Mental Health Consumer Concerns and be the patients' rights advocate for Alameda County. But there was no way the county was going to hire a group of former patients at that time. So we tried five years to be the patients' rights advocate for Alameda County, until we finally came over here [to Contra Costa County] in 1981.

Now, Mental Health Consumer Concerns is probably the second-oldest consumer-run group in the country. We started out being a patients' rights advocate, and then we got involved with trying to do alternatives. We have three consumer-run centers, a project to train mental health consumers to be providers, and we are now the patients' rights advocate for three counties, Contra Costa County, Solano and Napa.

I think over the last 20 or so years, in the mental health community, we've done a lot to educate mental health professionals and family members, and there's been a lot of improvement. But in the larger community, there are a lot of unrealistic fears, and we just have a whole lot of educating to do. The six major mental health organizations in this county, we've been meeting for about five or six months to organize a campaign to work on more community acceptance. And in the middle of our organizing, Crestwood [Behaviorial Health Inc.] bought a building (in Pleasant Hill for an 80-bed mental health rehabilitation center), and the neighborhood started hearing about it and resisted. There was a meeting, about 150 to 200 people, and people had concerns about their families, their homes and property values, but these concerns started escalating to unrealistic fears--to we're dangerous, violent and not capable. And there was talk about how thousands upon thousands of predators were about to descend on the neighborhood. The irony is that people who are not receiving service are the ones who are most likely to cause difficulties. We desperately need a facility in this county. Contra Costa sends something like 140 people outside of the county to locked facilities--it's sort of like out of sight, out of mind. And the whole thing, again, is if people are going to recover, there needs to be life for us out in the community, whether it's school, work, meaningful activities, relationships or churches.

Read articles about the Contra Costa County Crestwood facility.
Neighbors Fear Rehab Center Plan (Contra Costa Times, July 26, 2002)
Trying to Pry Open Minds Closed to Mental Illness (The San Francisco Chronicle, August 16, 2002)

Back to other first person stories.