Caught in the Middle
I have HIV and live on a fixed income. I'm currently living in a 15x15-foot studio apartment, in transitional housing for people with HIV. It's meant to be short-term, until a resident is ready to move someplace more permanent. But most people, like me, end up living in these units for two or more years because they can't afford to pay the thousands of dollars in rent needed in the New York City housing market for a decent one-bedroom apartment.
But my life wasn't always like this. In 1997 I was hospitalized with AIDS. At that time, I lived in my childhood home, owned by my family. Because of my work history, and being responsible in paying bills, my mother put me on the deed to the house and I was paying the mortgage. For some time, I tried to make repairs on the home and found inventive ways to pay the bills. For a while, my Social Security Disability Insurance and my mother's Supplemental Security Income paid most of the bills. Still, it was hard to make ends meet. There was no help from agencies such as the NYC Human Resources Administration (HRA) and HIV/AIDS Services Administration (HASA), or adult protective services for people on fixed incomes that own property. So for 15 years my mother and I struggled to keep our home.
In 2006, my mother's health worsened and the house was not suitable for an elderly person and a person with a health condition like HIV. It became clear that something had to be done, but no help from city or state agencies was available. As a result, my mother went to live with my aunt in California and we had to sell our home of 40 years.
"HASA will pay up to $2,300 a month for people with disabilities to live in 5x7-foot rooms but will not spend that same money to keep people in their own homes."
I was distraught over this, and in 2009 I hit bottom. I found myself in a Single Room Occupancy (SRO) building -- a real dumping ground for people with AIDS or drug addictions. It's so strange to me that HASA will pay up to $2,300 a month for me and other people with disabilities to live in 5x7-foot rooms but will not spend that same money to keep people in their own homes, or just half that amount to let people find decent apartments on their own. I find that really wrong.
Since this all happened to me, I have become involved with housing issues affecting people with HIV. I have been really active with the Action Center of GMHC, attending their weekly meeting for the last two years. It was there that I learned about the campaign for a 30% rent cap for people on fixed incomes. I found out that people with AIDS in New York City are just about the only New Yorkers who are forced to pay more than 30% of their public benefits (like Veterans' or disability benefits) toward rent. We were asking for legislation to cap their rent at no more than 30% of their benefits.
People in the group, who are also HIV-positive, were talking about it and really working to get the law passed. With the Action Center, and other groups like VOC AL and Housing Works, I went up to Albany three or four times to lobby for the rent cap. I also went to Washington, D.C., three times, and to New York City Hall too many times to count!
It felt so empowering to be part of this. I felt like we were getting our message across. There was such a sense of community. I knew then I wasn't alone. And it gave me a platform to have own my voice heard and to be a voice for others.
One time we did a sit-in at HRA Commissioner Robert Doar's home in Brooklyn to drive home the point about housing issues. It was a really thrilling experience. At the time, Governor Paterson was in office. When we spoke with him, he said he would sign the bill if it came before him. We thought there was a good chance that we could pass the rent cap. We thought we were on the verge of having something to celebrate in 2011. And it did pass, but at the twelfth hour Governor Paterson vetoed it. He lied to us.
When he didn't keep his promise I was filled with anger and sadness. I was in the process of transitioning to independent housing at the time, but wasn't financially stable enough to maintain it. I'm functionally independent but not financially. So I had to stay in a group facility in the Bronx, and I'm still there. I felt deflated, disappointed, and confused. I thought, "What am I going to do now?" For me to move on I have to be in a better situation that's affordable and safe. Staying in congregate living just keeps me stagnant. It's so hard to function when you're crowded in that space if you have health issues or a disability. It's so hard to live out of a box.
"Being forced to go to an SRO or congregate living situation or a rundown tenement building doesn't work. It's depressing and triggers relapses of drug use."
A 30% rent cap would go a long way to help people with HIV and others on fixed incomes to have decent, affordable housing with some hope for a more normal life. Being forced to go to an SRO or congregate living situation or a run-down tenement building doesn't work. It's depressing and triggers relapses of drug use. Until HASA changes the way it operates to help people with a fixed income, this same cycle will continue.
I think there is a very good chance that if we keep building our advocacy Governor Cuomo will work to pass the 30% rent cap. I'm hopeful that I can move on this year and be able to venture out to other goals I have, like going back to school and then to work. Gearing up for 2013, I've strengthened my resolve to double my efforts as an advocate. I've also recruited others to take up the cause. Until we can get the 30% rent cap I will keep fighting. We all have a right to decent, affordable housing in this city. Living with HIV is stressful enough. We shouldn't have to deal with stressful housing issues, too!
This article was provided by ACRIA and GMHC. It is a part of the publication Achieve. Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
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