World AIDS Day
World AIDS Day - When do we start getting better?
When was the last time you were in a room with more than eighty HIV-positive people?
Most people, especially Americans, believe that they don’t even know anyone infected with HIV. As a gay man who worked for the Littlest Nonprofit That Could as an HIV educator, I have friends, acquaintances and former clients who are HIV-positive. But never before had I felt so completely in the minority - as one of three HIV-negative people in a room of eighty-six attendees at an Ohio AIDS Coalition healing weekend in fall 2002.
Healing weekends were developed to give HIV-positive people the opportunity to gather in a safe setting, where they don’t need to fear exposure or discrimination. Through workshops and small group discussions, participants explore the issues they face because of their status, and hopefully emerge happier and healthier. Developing a support system, working on mental health issues such as depression, and coming to acceptance of HIV status are all characteristics of people who live longer and better lives after infection.
That healing weekends need to exist at all speaks to the enormous stigma people with HIV face on a regular basis. From the beginning of the epidemic, society’s impression of the disease has been that HIV strikes only those on the fringe of society - gay men, injection drug users and racial minorities. Because of the perception that HIV is a result of “unclean” behavior, people with HIV are fired from their jobs, ostracized by friends and family, abandoned by lovers.
Sounds like the 1980s, when the epidemic first started? Sadly, for many people, not much has changed.
Unfortunately, the stigma and shame people infected with HIV often feel is a by-product of our aggressive prevention efforts. We’ve told our community that AIDS kills, that you get HIV from promiscuous or unsafe behavior, that it is an individual’s responsibility to ensure that they don’t become infected.
Whether you believe these statements to be true or not, a person who is diagnosed as HIV-positive often is overwhelmed with thoughts that they are going to get sick and die, that they engaged in stupid behavior, that this disease is all their fault. Many of these people suffered from depression or drug and alcohol abuse before becoming infected, and receiving a diagnosis of HIV only exacerbates their condition.
At the same time, the success of individuals at maintaining their good health for a number of years has impacted prevention workers’ ability to reduce the infection rate. With powerful new medications, holistic approaches and healthier lifestyles, many people infected with HIV are living more than fifteen, twenty or even unlimited years, far longer than at the onset of the epidemic, when people passed away within three years of their diagnosis.
HIV is now often an invisible disease, as in, “What do you mean he’s HIV-positive? He looks so healthy.” We rarely see the wasted victims, covered in lesions, dying horribly painful deaths like we did in the early days of this holocaust. It is easy to see how many people in our community believe that HIV is no longer a problem, that even if you become infected, popping a few pills will fix you and your life will not be impacted.
These conflicting messages continue to tear apart our community. We tell the negative people that HIV is horrible, and then tell the positive people that HIV really isn’t that bad. It’s no wonder that more of our friends and family engage in behavior that increases their risk for infection, and that those who are infected have such a difficult time coping with the disease. It also explains why there is such a great divide within our own queer community - negative men to one side of the room, positive men to the other.
So what message should we be spreading to those who are at risk for infection and those who already are infected? Perhaps this: HIV is miserable. Sometimes, often, always - depending on who you are, what your health status is, and whether you have the ability to cope with the hurdles that will come your way.
If you become HIV-positive, there are powerful medications that will extend your life and give you the chance to be healthier. But those pills are poison, and there may be nasty side effects that seem worse than the disease itself. Your life will be much different than if you didn’t have HIV - definitely more complicated, potentially more difficult. With help, you will probably be able to cope with all of the changes - but in the end, IT IS FAR BETTER NOT TO HAVE HIV THAN TO HAVE IT.
Those words felt harsh and were difficult to commit to paper when I first wrote them three years ago. But they also continue to ring true. As a community, it seems we have yet to accept the reality of our situation.
At the end of each healing weekend, the closing ceremony is a moving event called a healing circle. For most participants, it is an overwhelming culmination of the love, acceptance, and simple human touch they have experienced over the weekend. In their everyday lives, many do not have the opportunity to experience this positive energy. The mixed feelings of joy and sadness resulted in tears and sobbing as people with eyes closed held hands, touched faces, and offered hugs.
As I participated in the healing circle, my feelings were, no doubt, different from everyone else’s. After all, healing weekends weren’t created for me. But my experiences were important, too. Certainly, I came away with a more profound understanding of the enormous problems faced by people who are HIV-positive. Never again would I be able to downplay the feelings and issues of friends and clients who are infected or affected. But I also vowed to work harder than ever to keep myself, my friends, and my community from becoming infected.
My final thought as I drove away from the weekend was one of gratitude. I was one of a lucky few who gets the chance to have the healing weekend experience. With decreasing funds, the OAC faces cutbacks, and that means even fewer opportunities for HIV-positive people. In my fantasy world gay and bisexual men, HIV-positive or negative, would be able to experience one of these weekends.
Remove AIDS, and we are still a community divided, tormented by stigma, scarred by society and ourselves into making choices that pave the way for further hurt. If we are going begin to live, we must all begin to heal.
Adapted from a World AIDS Day editorial by Brian Thornton. Published in the Gay People’s Chronicle, December 2002.