Monday, December 01, 2008

World AIDS Day

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!


Sandra said...

Your post way out did mine. :) Here is a post I did back in Sept.

Added you to my google reader. Which I must say I love. More blogs for me to read!!! Yea

Daisy said...

In my obit of Van, you'll notice I downplayed the arguing over safe sex. I was afraid if I covered that in depth, people wouldn't LIKE him as much, or think he was stupid, dangerous or deserved to die. So, I downplayed it, but I will tell you here.

I could also write his attitude off as "denial"--but you know, it wasn't just denial about himself. He simply DID NOT BELIEVE in the whole plague phenomenon, he wavered between believing that it was exaggerated, to believing it was all fake (school of Peter Duesberg), to believing it was a government plot. It was a very strange form of denial, but I knew the bottom line: he wasn't going to change his life in any way, and the idea that he should, threatened him. He had been tormented while growing up in Tennessee; sent to some horrible MILITARY SCHOOL (where of course, he said sex was everywhere!!!)... his room was invaded and they read his diary, etc, following him into town. Nightmarish. His own psychiatrist warned him that his parents had been called by the headmaster of the military school and thus, "knew everything"...but of course, very weird, they acted like they didn't know anything. (I was his beard in his youth, his parents were so glad to see me all the time.)

I think in that oppressive mental environment, where it had taken all of his resolve and effort simply to BREAK AWAY, he simply would NOT believe that there was any reason he should modify his behavior--isn't that what his Baptist preacher had also said? Isn't that what the shrink had said? It was like--if you sounded in any way like a Baptist or a traditional person --BEEEEEP! IGNORE!

The stage was set, and you simply couldn't talk to him about it without him sticking his fingers in his ears and singing LA LA LA.

And I know there were more fellas with this philosophy in the new age circles he was running in. It was like--YOU WILL TAKE OUR BATH HOUSES AND ANONYMOUS ENCOUNTERS WHEN YOU PRY OUR COLD DEAD FINGERS....

For such men, like Michel Foucault too, sexual encounters constituted some basic FREEDOM and RIGHT, and AIDS education was perceived as trying to abridge this hard-earned freedom.

At least, that was how I felt, talking to him.


I wonder if such an attitude is simply more common than we know.

Daisy said...

Sorry to natter on so!

For other readers, here is the person I am talking about:

Van Robert Ault 1956-1996

John Powers said...

I for one love your nattering Daisy!

Something I love very much about your comments is they are based upon really loving Van Robert Ault. A real and beautiful person deserving of love.

For lack of thinking up a better way of saying it, I feel so helpless trying to engage with AIDS denialists. It's kind of how I feel about discussions with dyed in the wool anti abortionists. I've seen too many threads derailed and I'm at a loss to know what I can do that's constructive about it. I don't think my arguing is particularly constructive.

I don't feel very comfortable about giving out too many details about my gay Ugandan friend. I met him quite by accident online--a story I find a bit funny but not so funny it's worth repeating. But I was really pleased to discover a group of GLBT Ugandans organizing. And I was quite taken by the connection my friend understood between basic human rights and confronting the spread of AIDS.

I was surprised to look up old press reports to find that things blew up with my friend over four years ago. But in a way when I look at Gay Uganda and the conversations from that blog I see that changes are coming.

The changes in attitudes in this country in my lifetime are mind boggling.

What has turned the rate of increase in the spread of AIDS in Uganda is real people telling their stories.

I helped edit a college senior research paper about the effectiveness of different HIV prevention programs an Ugandan student wrote. Good research is hard to do and at the undergraduate level I tend to expect problems. And there were in this study. However one very revealing piece of data jumped out at me. The young women and girls in the study overwhelmingly gave the thumbs up regardless of the particular anti-AIDS program they participated in. What I suspect is simply talking about AIDS prevention seemed empowering to them.

That set my mind racing of a business plan something along the lines of an Avon, but selling some health necessities. That never got off the ground. My Ugandan friends tell me I don't understand Uganda, and I know they are right.

I am really nattering :-) But I want to do a post on The Girl Effect (short YouTube video).

Safe sex involves so much more than what we talk about. Only in the context where we believe people's lives are valuable is it possible.

In the USA I want kids to have sex education because I know that studies consistently show that those who get it start having sex later than those who don't. I think it's partly as a result of maturity, but when they do start having sex they make better decisions about it too. What's more those better decisions, for example not having unprotected sex, are behaviors that follow them into adulthood.

Daisy you are extraordinary in your ability to understand others. I didn't know Van Robert Ault, but I tend to think you are right about the contradictions he confronted in life and love.

I think the essential task all of us have is to impart to others a recognition that they are valuable. I guess that shows me up as an old hippie. George Harrison was confronted rather mockingly in an interview with the lyric: "All you need is love" to which he replied, "I'll stand by that." I stand by that too.

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