June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box.
I was having lunch with friends the other day. One of my friends asked where I got my hair cut and that led her to asking me if I heard that a well-known hairstylist in our town died recently. I mentioned that the last I heard she was doing well. I officiated a wedding not that long ago where she was the stylist.
Then came the inevitable question: what did she die from?
It’s interesting to think about why we ask that question. I read obituaries. The New York Times almost always mentions the cause of death whereas our small-town paper never mentions how someone died. We tend not to ask how someone who is older died, but almost always ask about someone who is around our own age or younger. Death and illness are subjects we think about, but rarely talk about.
That was definitely the case about AIDS. AIDS highlighted all of the taboo subjects: disease, death, drugs, and sex. And we had to talk about those subjects because they were central to education and education was critical in reducing risk. It was the practical approach. Disease, death, drugs, and sex were not going to miraculous cease and go away. So we tackled the issue directly, talking about the very things no one wanted to talk about. Our message: Information is empowering and helps equip us with making informed decisions about the behaviors people are going to continue to engage in anyway.
On the one hand, we were bringing up the subjects of disease, death, drugs, and sex. On the other hand, we wanted to protect the privacy of those with AIDS. I don’t know about Dr. Gordon, but people routinely asked me, so how did they get AIDS?
The first time I was asked was right after I officiated my second memorial service of the day! Two died that week and we held the services on the weekend to allow for those who were traveling to attend the services. I blurted out, Does it really matter!?! Needless to say, that was a conversation stopper!
There was also a lot of truth in that spontaneous response. It doesn’t matter. We don’t ask how someone contracted cancer or if someone has MS as a result of their lifestyle. Even though the person who asked wasn’t intending judgment, it still was a judgment.
The thing about judgment is that it never solves or enlightens the reality of the situation. It only erects barriers. Judgment also prevents us from experiencing and demonstrating our humanity. My philosophy? The more delicate or difficult the subject, the more sensitivity we need around those subjects.
Yes, AIDS in the 1980s and early 1990s highlighted all of those taboo subjects: disease, death, drugs, and sex. But the reality was it didn’t matter. Someone was still sick, there was no effective treatment at that time, and many were isolated or rejected by family and friends because of fear. And, back then, everyone I worked with died.
Nowadays, people don’t die from HIV or even AIDS. There still is no cure, but treatment is effective…and costly. And, when The Question gets asked…because it still gets asked…I still respond, Does it really matter?