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Painted Brain | Madness In Law And Policy #3
We're bridging communities and changing the conversation about mental illness using arts and media.
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  • November 15, 2016

Madness in Law and Policy #3

On the role of those with personal experience providing mental health services:

While there are many roles for people with lived experience to participate in mental health care, I’d like to address the role of the peer advocate. I feel the need to speak about the role of peers in running services and what my experience is in this area. When it comes to mental health, there are many advantages to those with lived experience providing services to consumers, and I believe that the powers-that-be are finally beginning to understand this.

For many, many years, the voices of those experiencing a mental health crisis, as well as those with chronic mental illness, have been ignored and invalidated. For this reason, there is a great need, both now and in the future, for people with real life experience to provide knowledgeable and informed input as service providers in order to best serve the best interests of mental health consumers.

I’ve encountered many people who’ve been receiving mental health services for forty years or more, and many of them report a recent sea change in the system with respect to gathering input from, as well as validating the voices of, mental health clients. This is great, but before we get too complacent, we need to prepare ourselves for the long journey which lies ahead of us. We have to remember that the reason for such a noticeable and welcome change is the long-silent voice of the mental health consumer that is only now beginning to be heard.

Peer advocate positions are being created in mental health centers around the country. Now more than ever, the role of those with lived experience is being validated. We still have a long way to go, however.

I had the opportunity to attend a peer advocate training in 1999, as well as one in 2014, and I must say, the difference was striking. In 1999, the entire training lasted for a single afternoon, and just a few weeks later, I started working at a local mental health center. In 2014 by contrast, there were three sessions per week and the training lasted for several months. The 2014 training was not only longer but more intensive, better run, skillfully conceptualized, and far more relevant

This being said, I believe that the current level of training is still not enough.

I am speaking from my personal experience now. I worked as a peer advocate for a six month period from mid 1999 until early 2000. What I was hired to do seemed easy enough. I was supposed to let people use the showers, lockers, and washing machines. I was supposed to keep a list and to follow certain rules concerning the use of these items. The job was more difficult thn one might think, as the clients always wanted to talk to me about their problems. I listened to a lot of heavy stuff, about fights on the street, drug abuse, people that were sick, hungry, cold, and many other intense and frightening stories and complaints. Not being equipped to deal with this was one of the main reasons that I left that job.

Whenever I talk with other peers who’ve provided services in mental health, I hear a lot of the same things that I experienced myself. We were hired because it was thought that, as peers, those in the system would be able to talk to us in ways that they would not be willing to talk to mental health “professionals.”
And they were right. Many people told me things they would never have told a professional staff member. I believe that no clear mechanism existed to transfer this confidence and trust to the mental health professionals on staff, such as a social worker or a case manager. I was unsure what to do with all the stories and information I was getting. I felt overwhelmed, and soon discovered that many other peers felt the same way. There was no institutional structure to define and support our role as peers.

I think that our voices and our role as people with lived experience is highly valuable and important, but I am still a little conflicted as to how we may be utilized best. On the one hand, we are hired precisely because we differ from the rest of the staff. If we are to fulfill in our roles, I think that this must be acknowledged, I really don’t know what the answer is, other than to open a larger discussion of this issue. It would be great to gather a large group of folks with lived experience working in mental health and see just what questions, and perhaps answers, come out of it.

Tristan Scremin was born in Rosario, Argentina and emigrated to the US along with his family as a young child. He spent his formative years in Albuquerque NM and has lived in the Los Angeles area since 1991. Tristan believes that a true understanding of one’s own story is a key to understanding the world.

Tristan is a regular columnist for Painted Brain News

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