How empowerment: changed my life

American Rehabilitation, Autumn, 2004 by Marcie Kelley

"I don't have to live in my car anymore."

It is through my personal and professional experience that I write this article on empowerment. I have thought about empowerment a lot throughout the years. I have researched it, lived with it and lived without it. I have shared empowerment with others. Without it, I have been utterly alone. Empowerment is simple, yet complex. It pertains to people with psychiatric disabilities and to people with any disability. I learned this through working at a center for independent living. People with disabilities face many obstacles that can be disempowering. It is evident that when the disability community unites and rallies behind a cause, we become more empowered citizens.

I am writing this for the individuals, and for people who know individuals, who feel disempowered and alone. I hope that presenting some of the ingredients necessary for empowerment will facilitate self-directed growth and freedom.

I am the director and systems advocate for the Mental Health PEER Connection (MHPC), a member of the Western New York (WNY) Independent Living Project, Inc., family of agencies located in Buffalo, New York. MHPC is a peer-driven advocacy organization dedicated to facilitating self-directed growth, wellness and choice through genuine peer mentoring. MHPC employs 21 fulltime employees who have a mental illness or have recovered from a mental illness. Our peers are located in the state hospital, the county hospital, the county jail, the public mental health system and in vocational programs. We represent fellow mental health consumers by performing individual and systems advocacy to increase the rights, freedom and independence of those with mental health disabilities. We advocate with mental health housing providers, the Social Security Administration (SSA), state and local legislatures, the New York State Department of Vocational and Education Services for Individuals with Disabilities (VESID), public mental health providers in Erie County, the Erie County Department of

Mental Health, the Erie County Department of Social Services and the City of Buffalo Mental Health Court and Family Court. We conduct several self-help and mutual support groups weekly. In 2002, we provided independent living skills training, housing assistance, benefits advisement, advocacy and mobility training to over 350 individuals with psychiatric disabilities. We work with mental health housing providers and the county mental health department via the Community Services Board and advocate for people who are being mandated into treatment under the Involuntary Outpatient Commitment Law in the state of New York.

As the systems advocate, I have guided our center in advocating for what our consumers want by holding several town meetings on consumer issues. This information is disseminated to various stakeholders via position papers. Based on the information gathered at these town meetings, our agency has sponsored a freedom march, informational pickets, parity picnics and legislative breakfasts. We have demonstrated for greater freedom. We held letter-writing campaigns, call-ins, speak-outs, community open houses, a self-help luncheon and a managed care educational campaign. We helped to implement the Consumer Advisory Council in the Buffalo Psychiatric Center, the Erie County Medical Center Psychiatric Department, Gold Choice Family Medicine (a managed care health insurance for people with psychiatric disabilities) and a human service survey that "pokes a hole in West Side neighborhood group arguments that the community is over saturated with social service organizations" (Tan, 2000).

We have directed over $70,000 for peer services to improve the quality of life of Erie County, New York, mental health recipients. Through MHPC's efforts, many people with mental health disabilities in Erie County have improved their living standard. In addition, I serve as the co-chair of the Erie County Anti-Stigma Task Force.

In 1990, I came to the WNY Independent Living Project for help. I was living out of my car in the streets of Buffalo. I feared everyone due to my mental illness--multiple personality disorder (MPD). When I told the independent living counselor this, she did not look down on me and she did not seem to judge me. She expressed concern that I was living on the streets and that I feared that someone was going to kill me for no logical reason. She told me about housing that was available and convinced me to stay with a friend until the housing was arranged. She seemed to care. I listened. She showed me respect. She told me of other services that were available to me because I had a disability. She said that she knew this because she had a disability too. I did not understand it all. But she said that it was OK and that I could come back if I needed any other information or assistance. She gave me something that I had lost a long time ago. It was something that I never thought I would have again. She gave me hope.

I was severely abused as a child. I developed personalities to deal with it. I could not run away physically, so I ran away in my head. The personalities protected me from the abuse. As an adult, I was no longer being abused. But I still had the personalities--over 280 of them. I did not know that I had these personalities until I was 25 years old, when I was diagnosed with MPD while in a psychiatric hospital. Often, I was suicidal. I never knew why. I went to psychiatric hospitals for help. I have been in psychiatric facilities on 12 different occasions, for months at a time. The more I went, the more I realized that they were not helping me. I felt increasingly disempowered. The hospital staff members were getting frustrated with me as well. At one point, I was on 13 different types of psychotropic medications: anti-depressants, anti-psychotics, anti-anxiety, anti-everything. Eventually, I was on medications to counteract the medications. I was constantly looking outside of myself for something to fix me: the hospital, the doctor, the pill or the therapy.