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Challenging the Thought Process of HIV Stigma

January 12, 2017

Harold R. 'Scottie' Scott

Harold R. "Scottie" Scott (Credit: Selfie by Harold Scott)

In today's world of HIV/AIDS, there is much talk about stigma and how or if it has changed for those of us who live with the condition. It still exists.

For those who consider themselves to live outside the scope of HIV/AIDS, it seems there is an uncomfortable atmosphere when dealing with HIV/AIDS and those of us infected. Maybe I overthink the subject, but I often find myself watching the reactions and body language of those I come into contact with -- those who have known me and my openness about my life and HIV for years, as well as those who are meeting me for the first time and learning that I am someone living with HIV/AIDS. Sometimes, unspoken thoughts and reactions are as stigmatizing as the actual words and comments most think of as stigma.

October 24, 2016, marked the 25-year anniversary of my HIV-positive diagnosis. I was infected two years prior by the person I was seeing at the time, but I did not know that I was infected until I began having health issues in the summer of 1991. So, in light the fact that I had been already living with HIV for two years at that point, it has actually been 27 years.

My case is what has been referred to as "homegrown," in that I can trace who, when and where I became infected and that I became infected within the area where I lived at the time. Even though I was living in my hometown, I was traveling to Nashville, Tennessee, some 85 miles away, and this is where it happened. At that time, many cases of HIV/AIDS were reported to be the result of infected people coming back home from much larger cities and more populated areas of the United States where they felt more accepted -- away from much of the stigma attached to "home" in small-town America. In many cases, sons and daughters were coming back to be closer to family; they had become so sick they were returning to die. (Read the book My Own Country by Dr. Abraham Verghese, which gives a clearer picture of AIDS coming home.)

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I have often said, if others can ever come to terms with how a person becomes infected, they can possibly better deal with the idea of a friend or family member living with HIV/AIDS. I have seen so many families turn their backs on loved ones when it was learned they were infected, and often, I've attended funerals of those who died of AIDS complications and witnessed the shame of those who are supposed to love you unconditionally.

I can look back and say, yes, I have seen many changes: changes in treatments, ideas and the perceptions of others who feel they are not affected. As I think back over my 27 years of living with HIV and eventual AIDS diagnosis -- in that my T-cell count dropped below 200 some years back, resulting in a clinical diagnosis of "full blown" AIDS -- much has changed as far as treatment options, yet much remains the same, as I have been given the prognosis of a shortened life. Much also remains the same when it comes to the views of the general population, which considers itself not to be a high-risk group. Perhaps this is more a regional observation, as I live in the rural south.

The overall mindset of many is that HIV/AIDS only affects certain "types" of people, and it has been, and continues to be, a moral issue for many -- especially in the southern United States, in small cities and towns such as the place I was born and grew up in. And, perhaps, it is this way in all areas of the country. I can only speak from my own experience, in that I have never lived in a heavily populated, metropolitan city but instead have lived my entire life of nearly 55 years in the rural South. I have visited large cities and areas around the U.S. and even outside the U.S. and have often found a different "feel" for life. I love living in the South, so I'm not knocking southern living. I just know that there is life beyond the county line.

I am blessed to have family and friends who love me for me. But, even with that, living with HIV has at times been a lonesome and sometimes isolating thing. Perhaps that is more my own doing than the doing of others, for I have always tried to be a good and caring person who tried to treat my fellows with dignity and respect. That is something I have always wanted in return, but being a public advocate for myself and others living with HIV/AIDS regardless of how we became infected, it is something I don't always get. It saddens me and, honestly, angers me a bit when people ignore me when I speak to them directly, leave the room when I'm in their presence because I make them uncomfortable or talk behind my back, making me out to be one of "those" people who are unworthy, immoral or a shame to be associated with.

One of many things I have learned about myself over these past two-plus decades is that I often speak my mind and am not easily intimidated -- no longer am I the shy or voiceless person I once was. That in and of itself is a change for the better, and had it not have been for HIV in my life, I would probably have spent my whole life trying to be a people pleaser. Perhaps it is more of an age-related thing than an AIDS related one. Whichever it is, it's a good thing.

When I decided to go public with my positive status over twenty years ago, I hoped to help erase the stigma attached to the AIDS epidemic -- and possibly to give those uninfected who viewed those like me as "less than" the opportunity to examine their own thoughts and preconceived ideas about the lives of other people and at least try to put themselves in our shoes. I'm not sure that ever happened or changed over the years, for I think that many of us are so "stuck" in what we believe or have been taught to believe that we cannot even entertain the idea that what we have always held on to is wrong, and we will never be open to the idea of anything different. Therefore, getting to the true and real meaning of caring for our fellow man never happens. Therefore, stigma continues.

HIV/AIDS is definitely a touchy subject, one that is off limits for many. My part in it all has been to live with it as best I can and to bring it out into the open so that it will not stay hidden. This is often offensive to many, I realize, and some view it as "beating a dead horse" as I continue my efforts to enlighten others. It's all about change and challenging a thought process. For all these years, that's been my goal, and I don't expect it to completely change any time soon. Moreover, I suspect that, had it not been HIV, I would have found something else to talk/write about, so you would have had to put up with me regardless.

Send Harold an e-mail.

Read Harold's blog, Positive and Beyond: A Rural Perspective.

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