My Perspective on Freedom and Justice After Being HIV Positive 25 Years — June 29, 2015
I was twenty-nine years old in October 1989 when I learned of my HIV positive status. This was almost ten years after informational booklets to educate the nation about HIV/AIDS were mailed by the surgeon general to every American home. It was two years before Magic Johnson disclosed his status and finally the nation had a public image to observe and learn how someone lives after receiving this news. It’s my good fortunate that I’ve never had any of the opportunistic infections that would have meant I had AIDS, but for twenty-five years I have lived with the stigma of being HIV positive.
My testing and diagnosis happened while I was hospitalized for mental health problems. My immediate reaction was a sense of anger. I blamed myself. I didn’t think I was going to live much longer; I was all done with the rest of my life and I was going to die. Certainly I went through all of the five stages of grief; but mostly I felt what is best described as self-loathing.
It seemed to me that only people who were not HIV positive had the freedom to live a normal life.
I was estranged from my family, but I had some contact with one sibling. I remember telling my sister of the diagnosis. She reacted with anger — as if this was yet another thing I’d deliberately done to bring shame and embarrassment to the family.
Receiving an HIV diagnosis wasn’t the only reason that this was a very sad period in my life. I suffered from severe depression. My world was very small. I’d lost my housing and most of my worldly possessions. I felt as if I was dirty and I didn’t belong. In the early years of the AIDS epidemic I lost ten friends to the disease. I also lost many longtime friends when they learned of my HIV status, but I had other friends who were very kind and supportive. No one wanted the “wrong people” to find out that you’d been tested or diagnosed. In the local community ActUp, the Minnesota AIDS Project (MAP), Clinic 42 and the Aliveness Project were working to find justice for us with HIV/AIDS.
Newly Diagnosed & Learning to Cope with the Stigma of HIV
Before qualifying for Social Security Disability Insurance (SSDI) I needed to spend down my assets. I was permitted to own a burial plot, which even if it is practical expenditure, it doesn’t exactly signify optimism for a long and healthy life to someone in his early thirties. Thanks to financial assistance from the Disabilities Education Reform Act I was able to get training for a technical trade and then return to college for the coursework leading to a position in the humanities fields.
My income was limited to the SSDI I received. I was fortunate that MAP assisted me in finding housing. Being on public assistance meant food stamps and limited access to healthy eating. I didn’t disclose my status to many people.
At school, some people knew I was HIV positive and treated me differently, they didn’t want to share equipment with me, and didn’t want me to touch their things or them.
Over the next five years there was a more optimistic prognosis for an HIV positive person. The diagnosis was no longer an automatic death sentence, but this depended on getting tested early. HIV/AIDS, for the lucky ones, was becoming a medically treatable chronic condition. Initially AZT was the only effective treatment drug, and not all patients were able to tolerate its side effects. Patients, families and the general GLBT community were very active in addressing the issues of justice and freedom surrounding treatment and diagnosis.
But certainly your personal freedom as an HIV positive person depended on where you lived: whether your home was in the metro area of Minnesota or in an out-state region, whether you lived in a more liberal state like Minnesota or a more reactionary region of the nation, or if you were based in the United States or a less developed country.
This was a time of great effort for HIV/AIDS educational efforts. Statewide protests were staged when and where discriminatory events were publicized. Increasing numbers of the GLBT community came out of the closet, still others were outed unwillingly. In general, the increased awareness of AIDS/HIV brought greater freedom from the sigma and more justice for people affected by HIV/AIDS.
Even ten years after the learning my HIV diagnosis it was still hard for me to accept and to live with this reality. I was compliant with taking my medications, but I greatly feared isolation. I have found that many people believe they are accepting and supportive after they learn that I have HIV, but then they quietly back away from continuing their relationship with me. Perhaps this is a form of “Minnesota Nice.” For me, the hardest part to accept about the stigma is the mandate for telling a possible intimate partner of my HIV status, not because it’s the right thing to do, but because if I didn’t I could go to prison regardless of whether they contract the virus. My HIV viral load has been non-detectable for years, but the potential criminal impact is the same.
I have no idea what stigma Magic Johnson has faced in the years since he was diagnosed. He endured great discrimination when he first disclosed his status, but the following year he was on the Dream Team that won the Olympic gold medal. He and I have vastly differing resources to work with on issues of stigma. I wish him all the best, and thank him for his service as a public figure to the HIV/AIDS community.
While I have the HIV virus, I really need the assisted living housing provided for me by Clare Housing because of my mental health and the physical health problems I have related to neuro-muscular condition unrelated to my HIV status. Nonetheless, it’s my impression that it’s my HIV status that most likely causes people to distance themselves from me. The common thread for all Clare Housing residents is being HIV positive. Most people, me included, get placement at Clare Housing because we are facing homelessness and poverty in addition to having an HIV diagnosis. It’s been my experience that some people have a prejudice against those living in Clare Housing. Some friends discontinued their relationship with me after they learned where I live.
Poor and Positive – Feeling Like a Lower Caste of Citizen
We live in a country that treats people living in poverty very differently from those with even adequate resources. There is a stigma to being poor. It’s an injustice.
I still receive a monthly SSDI payment, from which I receive a $97 personal allowance. My lack of financial resources limits my access to transportation, communications (a regular cell phone bill would use too much of my monthly allowance), food and so many other pieces of the American Dream. This $97 needs to be stretched to cover all toiletries, clothing, postage stamps, haircuts, needed over-the-counter medications… I’m really fortunate that I don’t have a tobacco habit. But for me, and others like me with HIV and limited resources, it often feels like we are a lower caste of citizens.
I must be really cautious here – I am sincerely grateful for being one of the fortunate HIV positive individual receiving a placement in Clare Housing and for everything they have provided for me. It is here that I have known great generosity, compassion and love. This placement has elevated me to the best level of health I have enjoyed since my HIV diagnosis. But there are many more HIV positive people, including a person I know, who desperately need similar placement. However, because he has housing now, even though it’s a toxic environment for him, he remains, month after month, on Clare Housing’s waiting list, as there are always others with greater emergency needs, usually homeless, who get placed when an opening occurs.
There are now HIV positive individuals who were born with the virus and have lived thirty years or more with these issues. And there are other younger persons who were diagnosed with the virus more recently and have lived there entire lives with the internet and cell phones. Now we all share the benefits of those who created a more open HIV/AIDS community and the wide variety of more accessible options for HIV positive diagnosed person than was available in early years.
Great Strides Have Reduced Stigma, But There’s More Road Ahead
Today you can belong to Facebook and internet support groups that share news and encouragement. This is very important for me now, and would have been invaluable for me back in 1989. Today AZT is no longer the treatment drug of choice, it is used with the many other treatment options which have been developed since the 1990’s. Today there’s a “morning after” medication to alleviate the risk of infection after possible contact. There’s even quick HIV testing kits available in bars (and at home and in health care facilities) to let people know almost immediately where they stand with respect to having the virus.
Great strides to reduce the stigma I knew as a gay man have been made between 1989 and 2015. Same sex marriage is now legal in Minnesota. Work is finally being done to address to issues of stigma attached to mental illness. And, if truth be told, my neuro-muscular condition is the greatest challenge I face now. When I feel the sting of being stigmatized I can’t really sort out whether its source is from issues related my family, my past, my earlier feelings of being a gay man, my being affected by mental illness, because I am HIV positive, or because my physical abilities are gradually becoming more and more restricted. It’s all of these and more. But my guess is that the stigma I feel is true, at least to some extent, to having the HIV diagnosis. I believe that my feelings are similar to anyone else with HIV, even Magic Johnson.
Twenty-five years later I have reached the age of fifty-five. That truly was impossible for me to comprehend in 1989. Would I wish I didn’t have HIV? I don’t know, that would be like saying “Would I wish I wasn’t me?” HIV has been such a part of my life, the part when I have grown and loved and learned more than I did in the first half of my adult life.
Recently I saw a comic piece on a Facebook HIV support page. It showed two men exiting a movie theater. The first man said: “Uh, uh, I need to tell you that I’m HIV positive.” And the second replied saying “Oh yeah? And I’m bald. Where would you like to go to get something to eat?” This really made me smile from my heart. If only more could be so accepting.