Jay Mahler

November 1, 2012

In the series debut, longtime advocate Jay Mahler shares his decades-long relationship with the mental health system. Hear about his first encounter with treatment and how that catalyzed a lifelong commitment to consumer rights activism.

Stories of Recovery is a video series featuring real, honest, and hopeful stories of mental heath recovery — all told from consumers themselves.

Stories of Recovery: Jay Mahler

Transcript: 

The first time I experienced signs of mental health issues was when I was 18. I was a student at Cal Berkeley working on the Free Speech Movement to end discrimination in housing for ethnic minorities. I went without sleep for about 6 days and had a nervous breakdown and that was the start of my experience.

Over the 10-year time I was in mental health treatment, I was diagnosed or labeled with 5 different diseases by 4 different doctors.  I've been diagnosed or labeled with psychothymic personality disorder, I've been labeled manic-depressive. I've been diagnosed as having paranoid schizophrenia. At age 20 I was diagnosed as chronic schizophrenia undifferentiated.  

The only label that made sense to me was adjustment reaction to adulthood starting Cal Berkeley.  Going berzerkly in Berkeley mamde sense to me. Adjustment reaction to adulthood.

In the '60s, the system did not believe that those of us with major mental health issues could recover and it was very much an authoritarian kind of medical model approach so when I was hospitalized I didn't have any rights to have friends, make telephone calls, have visitors. I was given shock treatments against my will, given medications against my will. There was a period in shock treatments that I was completely without memory. I didn't know who I was, what my name was. I didn't know where I was. Perceptions were bad.  

It was very terrifying to not know, to not have any memory. I actually remember being, going through that just before I lost my memory loss, I was actually literally tackled by the doctors and forced to get the shock treatments I really didn't want. I could tell I was going into this confusion state so yeah, by far the shock treatment was the worst thing for me.

The last time I got out of the hospital in '66, I had gone from being Jay Mahler a person to being Jay Mahler a mental patient. A lot of it had to do with my sense of self, my self image. When I got home, I slept about 20 hours a day for over a year.

But I do think there was something about time being a healing. Actually that time when I was alone there was some healing going on.  But the things that really got me going, there was a funding cut in Alameda County, where the psychiatrist where I was going just every 3 months to pick up a big bottle of pills, he lost his job.   

So thank goodness there was this funding cut, because then I got into a group with other people who had mental health issues, and I had a very good psychologist named Dr. Moore. It was Dr. Moore that encouraged me to go major in psychology so studying other approaches, going back to school was very important, getting a job.

My mother had passed away, but a good friend of hers worked for Kelly Girls.  So I actually got, she got me a job through Kelly Girls working at a drug store, and that was very significant to my recovery.

So there were a number of things over a several-year period, including going to church. It was very important for me to go to church and kind of get in touch with my spiritual side that was totally denied and devaluated by the public mental health system.

Today, across the country, started by the National  Alliance for the Mentally Ill, Prayer Days, National Day of Prayer Days are happening for those of us with serious mental health issues. And we know that 80 percent of those with serious mental health issues are unemployed.

So today, I hope we'll pray that people get jobs. We know that people with mental health issues are dying 25 years earlier than the general public. They die at 52 instead of 77. We recently lost DeWitt, Darnell, Michael Bell. We pray that we live longer, that we get the physical health needs that we need. When I first got involved with the consumer/survivor movement it was very much anti-public mental health system.

Most consumer/survivors would have nothing to do with the public mental health system.  So I was the person who was willing to develop relationships with providers that shared our approach and to try and work with the system to listen to us and to do things that would support us.  

To me, most importantly the consumer movement is a civil rights movement. It really started by many of us who have been mistreated and poorly treated in state hospitals and hospitals, and came together to try and call attention to what was wrong with the system and for us to support each other and validate what we had been through.

Currently I work for Alameda County Behavioral Health Care Services as the Consumer Relations Manager.  We're responsible to make sure that the consumer voice is reflected in the transforming of the public mental health system.  

Literally what I'm doing now, I'm actually kind of phasing out. I'm going through a process of retiring and figuring out what I am going to do.  But you never retire from a cause, so what I'm really hoping to do is to work on spirituality and on this 10x10 Campaign which an effort to try and improve the life expectancy of people with mental health issues.

It is a tragedy that people with serious mental health issues die on an average 25 years earlier than the general public.  So people with mental health issues are dying at 52 instead of 77. I think before I had my nervous breakdowns, I didn't have very much sensitivity to people that were going through difficult times.  I think that what I have been through personally has helped me try and be sensitive to other people who are going  through difficult times no matter what kind of situation it is. And, also I think that being involved in the consumer/survivor movement has given me a purpose in life. It gives me something meaningful and I feel I'm making a contribution.