Breaking the Stigma
HIV discrimination within our own community perpetuates a stigma against one of us that hurts all of us
By Mike Fleming
Ask any group of gay men a question, and you’re not likely to get the same answer twice. Make that question about HIV, and you have a diversity of opinion and stories worthy of a soap opera.
Despite advances in the prevention and treatment of HIV, the shadow of HIV stigma still looms large, affecting many of those of living with the disease. So profound is the fear of not just the disease but our fellow gay men who have it, some of the conventional presumptions and assumptions even fly directly in the face of public awareness.
To some guys, it is easier to avoid HIV testing, for example, than to risk exposing themselves to discrimination or disapproval. For others, the fear is so deep that they make not just the topic taboo, even with sex partners, but they also ostracize the HIV-positive men they meet the moment they find out.
And hello, those very behaviors are putting gay men more at risk of being exposed to the virus. Not talking about it is so dangerous that it feeds stats and reports that HIV rates coming down – unless you’re gay, or that HIV infections among gay men in the U.S. are highest in the South, or that Atlanta is a hub for new cases of gay and bisexual men being diagnosed with HIV.
Or that more than half of gay men who had sex last night did not use a condom or any other preventative measures widely available to them.
Ignoring the information is what’s really scary, deciding not to utilize our ability to stop its progression by ignoring our resources – all because HIV is a topic that’s too off limits.
Origins of Stigma
Of course, attempting to minimize the fears and stigmas, or even rationalize them, fails to take into account the complex dynamics that both trigger and perpetuate stigma against the disease, and discrimination against the gay men who already have it.
While the quality of life has improved enormously for people with HIV in the past 30 years, many of the same social and psychological barriers remain.
Ultimately, HIV is not like any other disease in the way that the public perceives it. What separates it from other illnesses is that, as a communicable disease, those infected are often seen as vectors for transmission. Blame is assigned, and not just to the infected individual but to an entire population, whether they be gay men, injecting drug users, or people of color.
That means that some gay men who are HIV-negative get a fight or flight response. In an effort to say “that’s not what all gay man are,” they try to separate themselves from their brethren. Rather than a united front, we splinter into “us and them.” It’s not helpful, not to mention that it doesn’t even work. We are all in this together whether we shun other guys or not.
Even before the AIDS epidemic began in the early 1980s, we were already stigmatized, and labeled by some as being either promiscuous or irresponsible. By the time the first wave of infections hit, the rapid spread of the disease through these communities only helped reinforce that negative stereotype.
As a result, the people most at risk of HIV were often sent into hiding, either for fear of abandonment, discrimination, or abuse. And the cycle was set for more abandonment, discrimination and abuse.
Discomfort with sexuality in general, especially in the puritan South, also plays a major role in the stigmatization of HIV. Even in otherwise progressive cultures, sexuality can often incite intense feelings of embarrassment or shame, particularly when related to sexually active gay men, or sex between youth under 18.
At the same time, so-called “secondary disclosures” (“How did you get it?”) further prevent many from stepping forward when faced with such fears as having to admit an affair, reveal a drug problem, or come out about one’s sexuality. HIV criminalization in states including Georgia only serve to reinforce these fears, casting guys with HIV as “blameworthy” while suggesting that those without it are “victims.”
All of these issues can’t help but contribute to feelings of stigmatization, both real and perceived, and may explain why 20% of the 1.2 million Americans living with HIV remain wholly untested.
So What Can You Do?
Learning to overcome HIV stigma is not easy. It requires a degree of self-reflection, as well as an honest assessment of your own personal biases and beliefs. One of the aims is to understand which of your fears are perceived and which are based on actual experience.
By separating the two, we’re better equipped to lay out a strategy to not only overcome our fears but to better protect ourselves against possible, real acts of discrimination or abuse.
In the end, overcoming stigma is not so much a decision as a process, one that takes time and patience.
More importantly, it’s about not being alone. Sharing your fears with others can often put things into better perspective, providing you a sounding board rather than isolating yourself in your deepest, darkest thoughts.
Where To Start
Here are a few tips on how to begin breaking HIV stigma, whether as an individual or in groups, whether you’re already HIV-positive and blame yourself, or are currently negative and are terrified of the disease and the people who have it.
Talk about HIV openly, especially with potential sex partners. Try to remove blame from any discussion. Remind yourself and others that HIV is a disease and not a moral consequence.
- HIV-negative guys who are sexually active should realize they are very likely having sex with HIV-positive guys, and that is OK. You can have sex with HIV-positive guys and avoid HIV transmission.
Educate yourself about HIV using quality reference materials. Atlanta is filled with great community-based organizations that offer brochures, pamphlets and reading lists that are not only accurate and plainly written, but culturally relevant to the experience of gay men. They also have access to support groups and counselors with whom you can speak freely and confidentially.
If you find out someone is positive, think about how you would feel if you were in his shoes. How would you want someone to react? Thank him for being honest and having the courage to tell you. It is very difficult to tell someone you have HIV, especially in a sexual situation. Talk about the kind of sex you enjoy and want to have.
Understand your rights under the law. Community-based organizations can often put you in touch with legal services to assist you when faced with discrimination at work, in housing, or with healthcare providers.
Work with a professional if necessary to try and figure out in advance how you’d answer questions like, “How did you get it?” or “Did you use a condom?” If you’re one of the people who would ask such things, think about that being insensitive.
Accept that you and others, who haven’t done their research or come to the realization that they need to, might ask stupid questions. Try not to be too defensive. Remind yourself that it’s more a reflection of their own fears and that they’re going through a process, too. If you can, use it as an opportunity to educate and enlighten. You may be surprised how little people know about the disease. Give them the benefit of the doubt.
If you are experiencing prolonged depression or anxiety, or have a substance abuse problem that either stems from or is exacerbated by HIV in yourself or someone around you, seek professional help. Don’t go it alone if you don’t have to. There is help.