April 1, 2010

Shirlene Cooper Beat the Odds—And She Helps Other Positive People Beat Homelessness.

In 1997, after years of substance abuse, Shirlene Cooper learned that she had HIV. Doctors consigned her to a death sentence with a quadruple diagnosis of HIV, pneumocystis pneumonia (PCP), tuberculosis and cervical cancer. But Cooper defied the odds. She not only kicked drugs and got her health under control; she also went on to champion the right of people living with HIV/AIDS to have decent housing.

When and how were you diagnosed with HIV?

In March of 1997 I had a high fever of 103 and in May I was diagnosed positive. I wasn’t too surprised: I’d been doing drugs for years, and I had a positive son who died at age 2 in 1995. He had to have contracted it from me. When I was diagnosed I had 34 CD4 cells, PCP, TB and cervical cancer. I was very sick; I remained in the hospital for eight months and when I finally came out I was homebound for two years with a visiting nurse and a home health aid.

How did the HIV diagnosis affect your life?

From that point on, everything was uphill. I acquired a doctor and he taught me everything that I needed to know about the disease: how to save myself and how to fight back. He put me on a regimen [of HIV meds] with few side effects, and I was able to maintain an undetectable [viral load], and my CD4 cells started to increase immediately. My HIV diagnosis was a near-death experience and I knew that the lifestyle I was living had to change. I was a substance abuser, not being a good parent to my daughter, and not working. I knew I had to stop using drugs in order to be more positive about the disease that I was living with.

How did you get involved in the HIV/AIDS community?

I knew that I needed to spend quality time doing something to fight back against the disease throughout the community. I knew that I needed to make changes because I didn’t know how much time I had left to live.

I became a peer counselor at the hospital where I was diagnosed. My doctor referred me to Project TEAM (Teaching Enlightenment and Moving On) where they were hiring hospital peer counselors. They were making an effort to educate patients and faculty members in the hospital, psych wards, people in the HIV clinics, people on the sidewalks, or wherever else they needed us to do presentations. From there, I started working at NYCAHN [New York City AIDS Housing Network] handing out fliers in different communities throughout the five boroughs. They promoted me from organizer to lead organizer, to deputy director and then coexecutive director.

What inspired you to become involved with housing and homelessness for people with HIV/AIDS?

When I started at NYCAHN I had no idea how housing worked for people with HIV and AIDS. I participated in NYCAHN’s POWER Academy [People Organizing Welfare and Equal Rights] and I asked what equal rights are we fighting for: disease, housing, healthcare, etc.? I learned that the system of providing affordable and medically appropriate housing for people with HIV and AIDS was corrupt. There was a law in NYC that generated rent, medical nutrition and transportation allowances, but the landlords (we called them slum lords) took advantage of this law and started extorting money from the city and putting people with HIV and AIDS in rat-infested apartments with multiple [problems]. There was a law enacted to deal with homelessness, to state that people living with HIV/AIDS should not be placed into the shelter system because of the spread of disease—that instead they should be put into SRO [single room occupancy] housing. We strived to make sure that these laws were being enforced appropriately.

How has New York City homelessness and housing changed from the late 90s to now?

When I came in, the monthly rental assistance allowance was only $550. Today the allotted amount is around $1,000 a month. In 2005, we succeeded in our efforts to get three bills passed. The first, the application act, ensures that anybody who is newly diagnosed has to fill out a housing application immediately and should receive housing within 90 days. Second, the tracking bill enforces that every case manager track where each person with HIV/AIDS lives. Lastly, human resources is supposed to report back to the City Council about how the program is working.

How is your health right now?

Three months ago I had surgery. Battling both HIV and cervical cancer is extremely difficult because I have had at least three surgeries a year for the past nine years Once I got back to work I would have to have another surgery, but I wouldn’t stop working because work was healing me.

How has having to take time off affected your career?

I’m not happy about having to take time off, but of course I have to put my health first. Life becomes quite boring. I just feel like I’m useless right now because of my condition. There are people out there you don’t want to be homeless, and you don’t want people to fall though the cracks. While you’re sick you can’t do anything about it. I’m looking forward to getting back out there as soon as possible.

Where do you get your determination?

My mom was a very hard worker and fought through all the trials and tribulations in her life to prevail as a mother of a family of six girls. She was very strong. No matter what went wrong, she still continued on. I strive to [be that same kind of mother to] my daughter. I’m a grandmother now—when I was diagnosed in 1997 my daughter was 14 years old. I was in the hospital, and she wanted to see me. I was less than 80 pounds, losing my hair, pale, with tubes coming in and out of everywhere. The minute she saw me she was so devastated she couldn’t handle it, she went into shock, she screamed, she cried. I had to get her out of there. I didn’t want her to see me like that. I had just lost my 2-year-old son from HIV/AIDS and she thought that I was going to die as well. I had to educate her about HIV/AIDS—the condition, treatment adherence, disclosure, research and awareness. I informed her that I was going to choose to live with the disease, motivate her to be supportive and how to protect herself. Now she has my grandchildren, and she can pass on the same lessons to them.

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Previous Comments:

merle washington, new jersey, 2010-07-18 13:55:41
Read your extraordinary story,and I was both enlighteened and informed. Would like to meet a POZ woman who has your drive

Reese, , 2010-05-19 08:42:56
Thank you for sharing your story. Like yourself, I work very hard to support myself, my family and to take care of my health. It is encouraging to know that it STILL all makes sense. Thank you for not giving up!

The Queen, Brooklyn, 2010-04-13 19:31:23
I know Ms. Cooper personally and I must say that she is a living testament to perseverance, hope, and positive change. I am proud of her and very happy to be of her acquaintance. Cudos to POZ for recognizing her struggle, talent, and myriad accomplishments.