Disability Studies Quarterly
Summer 2004, Volume 24, No. 4
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Stigma Busters in Their Own Voice

Victoria Molta
Email: vmolta@aol.com

Victoria Molta is a person living with a psychiatric disability, who is also a mental health advocate and published writer in Connecticut. She currently coordinates a program called "In Our Own Voice," funded by the National Alliance for the Mentally Ill (NAMI), which tries to fight the stigma of mental illness with personal stories. The following essay explains the power of the program.

To stand before a group of strangers and tell one's story is an act of strength and courage. Speakers from "In Our Own Voice," who are living with and in recovery from mental illness, talk about various aspects of mental illness such as dark days, treatment, coping, acceptance, and success that pertain to their own personal experiences.

The speakers call themselves "Stigma Busters" because through their speeches, they fight the stigma associated with mental illness. Many are active on mental health boards and in clubhouses as advocates and counselors. As a group, we meet at each other's houses once a month to touch base on where we've been and where we're going. Recently, several of us went to a NAMI fundraising walk in Hartford and wearing our sky blue T-shirts with "Stigma Busters" printed across the front and walked three miles around the park. NAMI-Connecticut raised $100,000 on that day.

In July 2003, Stigma Busters established the goal to speak at 100 mental health agencies, clubhouses, National Alliance for the Mentally Ill affiliates, colleges, high schools, hospitals, law enforcement agencies, group homes, church groups and more. We reached our goal 10 months later. It has been exciting to be part of a group of people with the same vision, to work for something powerful and good and beyond ourselves, to educate others, and to reach out and open minds.

Stigma Busters have spoken to mental health consumers, giving them hope for recovery and assuring them that they are not alone. They have spoken to family members of mental health consumers to offer hope for their loved ones. They have spoken to professionals such as social workers, nurses, police officers, who have contact with people with psychiatric disabilities and would like information and insight into how to work most effectively with them.

As a coordinator, I set up dates and times, and match speakers with places where they are to speak. I find the majority of places through referrals from evaluations that audience members fill out. The presentation begins with the speakers relating their experiences and showing a brief video on living with a mental illness, followed by questions and answers with the audience. From the audience evaluations, I collect the referrals, where future Stigma Buster presentations will be. The National Alliance for the Mentally Ill central office in Washington, D.C., also receives copies of the evaluations.

Programs such as "In Our Own Voice" touch people with personal stories of illness and recovery in powerful ways. At the conclusion of a presentation, there is a receptivity as well as openness on the part of the public that wasn't there before. Perhaps before, people weren't ready to hear such stories. Reading through the evaluations, positive, glowing comments thank the speakers for their stories of hope and recovery.

I wish Stigma Busters had been around when I first became ill more than 20 years ago. At that time, in the early 1980s, when I was engulfed in despair and psychosis, I didn't have a clue what was going on with me. I was in college, struggling and feeling very much alone. Since then, there has been progress for people with psychiatric disabilities.

Medications are much more effective; at least I can say that for myself. For 10 years, I took a major tranquilizer that wiped me out and deprived me of energy. I suffered from side effects of weight gain, dry mouth, fatigue, stiffness and restless limbs. Today, I take a medication that "feels right." Though there are still certain side-effects, I feel more or less "normal," calm and optimistic for my future. I have friends who have psychiatric disabilities as well. Support from friends, family, and my husband is vital, and knowing I am not struggling alone lifts off the burden of isolation.

My life has meaning today. I haven't been hospitalized in more than 15 years. There is stability. My husband and I own a home. We have full lives. My work in the mental health movement has taken me many places, geographically and figuratively. I have marched down the streets of Pittsburgh and around the capitol in Hartford in anti-stigma marches. I have testified for funds for supportive housing for people with mental illness. I have written and published 10 letters to the editor about the importance of supportive housing at newspapers throughout Connecticut. I have attended mental health conferences in Berkeley, Calif., and Nashville, Tenn. I have told my story to legislators in Hartford, and I have written poems and essays for literary and mental health journals.

As a coordinator of "In Our Own Voice," I organize and set up speaking engagements, keep track of contact names and phone numbers, call speakers to arrange dates, and obtain directions to send to the speakers. I have had the freedom to largely create my own job and it has worked out. I have been fortunate to have been part of a successful, growing program in the past year.

These days, I focus on my work with Stigma Busters. It is a good fit for me. Stigma Busters speak for many who are struggling to find their own voices.