It's late in the day on World AIDS Day and I'm still not sure how to commemorate the day.
It's the 25th Anniversary year for the Pitt Men's Study. I started participating in that shortly after it began. Two years ago I wrote about giving a speech in a speech class shortly after giving my blood and fluid samples in the Pitt Study. One of the main things I wanted to get across in the speech was the importance of confidentiality to assure an effective public health response. In that University Times article I just linked to Charles R. Rinaldo one of the chief researchers of the study remarks about his regrets:
He said his research team walked a fine line between wanting to grab people by the shoulders and shake them to alert them to the danger, and the desire not to intimidate, insult or disrespect their choices in life. “Maybe if we had been more fear-inducing … maybe we would have saved more from infections, more lives.”Maybe if they had been more fear inducing, but I'm not so sure. At the time the fears about social stigmatization were acute. That's why my speech was pleading for confidentiality in the public health response.
The principals at the Pitt Men's Study have other regrets. Their sample was overwhelmingly white. The same small town phenomena that allowed the recruitment of so many in the study, also revealed how isolated the broader community of Pittsburgh is along racial lines.
Looking back all of us wonder why we haven't done more to stop the spread of AIDS. AIDS is a preventable disease. Why, why we ask have we been so ineffectual in preventing new HIV infections? While the preventions are simple actually employing those preventions prove not to be quite so simple. Prejudice and intolerance stand in the way.
Unprotected sexual intercourse is a primary way that HIV is transmitted. In much of the industrial world the disease has hit men who have sex with men and intravenous drug users hardest. In the developing world the demographics of HIV infected persons looks quite different.
Sometimes this difference can be hard for AIDS activists to talk across. For example my friend Nathan's organization the BSLA has a program to assist widows caring for dependent orphans get more money from agriculture. A key part of the program is AIDS prevention education. They are aided in this effort by The Slum Doctor Programme out of Bellingham, Washington. Many of the Americans involved with the Slum Doctors are were AIDS activists here before becoming involved in their out reach in Kenya and Uganda. I don't remember the circumstances exactly, but in discussions an American in discussions with the BSLA said "You can't say that, some of the people helping you are gay."
The other side of the coin comes from a friend in Uganda, the capital city Kampala. He was moved to do something about the suffering caused by AIDS. For him the issue couldn't be divorced from the extreme prejudice against same gender loving people. He tried hard to attack the prejudice and misinformation and was knocked down hard by the government for that. Public discussion of homosexuality is not tolerated. In thinking about my friend's experience, I'm so grateful for Gay Uganda's great blog, his courage for speaking out and the dialogs he's entered into. Of course trying to count the ways I'm grateful for all the work Sokari at Black Looks does, I loose count. But I count first how she has helped to provide a voice for same gender loving people across Africa and has highlighted the real issues involved.
Just recently my friend in Kampala found out about Ryan White. He asked if I'd ever heard of him. Well, of course I had. Ryan died at age 19 in April of 1990. It's hard to believe that he's been gone almost as many years as he lived. Ryan was diagnosed with AIDS when he was just 13. He gained national notoriety in his fight to attend regular school like an ordinary kid. Something I love about kids is their highly developed sense of fairness. Anyone who's been around kids will know: "It's not fair!" is a common complaint. What was so extraordinary about Ryan White was his confidence in knowing he was right. That confidence allowed him to confront the taunts and vile rumormongering with compassion and truth. He taught Americans not to hate. Almost 18 years after his death Ryan White's story still provides a beacon of hope that prejudice can be lessened and people can be real.
Across the world courageous individuals have risked social isolation and abuse to announce their HIV+ status publicly. Their genuine faces make AIDS prevention more urgent and effective. They also provide voice for AIDS treatment programs. There are very real and lasting solutions being implemented in conjunction with the treatment of AIDS. In Rwanda TRACnet, a system of computer and mobile phone technology presages improvements possible in developed countries. So much has been accomplished, but there is still so much to do!
A friend sent me a link to Infinite Family an organization which allows people all over the world to become mentors for AIDS orphans in Southern Africa. I think it's great. The Web site has a short introductory video. One statistic jumped out at me: 75% of the households in Zambia are caring for orphaned children. All over Africa the care of orphans is a great burden.
The request I hear most often from community based organizations in Uganda is assistance for school fees. The need is so great that you can find many great ways to support organizations in providing school fees. I'm really a fan of community to community solutions. Ask around among your friends and I bet that one of them at least is involved with a program to assist children affected by AIDS world wide. Most of the orphaned children do not have AIDS. Some, of course, are in orphanages, but many more are being cared for by extended family. Providing assistance for school fees is an enormous help. School immediately changes children's lives for the better, and has so many long term benefits too. Life in Africa has a program for assisting with school fees. Kayiwa Fred's Kampala Junior Team too.
I have no money and feel overwhelmed. So if you're like me, we just have to be creative in figuring out ways to help. We must not forget the those suffering as a result of AIDS. Clearly one person can't do much, but we can all do a little. The many of us doing something adds up to a lot.
Sometimes when the talk turns to AIDS a speeches about personal responsibility come out. Personal responsibility does play an important part in slowing the spread of AIDS. Too often, however, the speeches seem designed as a rationalizations for not doing anything. The attitude is: "It serves them right to suffer." But even for those who feel that way, the numbers of people affected through no fault of their own is huge: women raped as part of armed conflict, HIV free children orphaned by AIDS, people infected by medical equipment, and on and on. AIDS is a human disease and like all illness affects people; people not so different from ourselves.
All of us can do a part to prevent the spread of AIDS, and to heal the terrible toll the disease takes in all of our communities. The theme of World AIDS Day in the UK is Respect and Protect: Together we can end HIV prejudice. Now more than ever I think: Yes we can!