Tuesday, June 5, 2012

"And the Band Played On"




October 2, 1985, is a memorable date. It changed history because it gave a face to AIDS. Up to that time Acquired Immune Deficiency Syndrome was featureless. For most people, it was the illness of gay men. Men who lived elsewhere.
            Some doctors called AIDS “gay cancer” because of the presence of Kaposi’s sarcoma in many of the men who’d died from it.


The lesions of Kaposi’s sarcoma.

But those men didn’t live in our town, our state. They lived in San Francisco. There were a lot of them there for sure. They lived anywhere but here.
            By October 2, 1985, newspapers and magazines had been carrying articles about the disease for several years. For some readers, AIDS was a disease of those disreputable and unredeemable men called “gays” or “queers” or “homos” or “homosexuals.”
            It was the curse a just God had called down on them for their actions in bathhouses and dilapidated rooming houses.
            These AIDS carriers were better off dead.
            The sooner the better.
            Let’s rid the world of them and their repellent disease.
            Those were the thoughts countless people in the United States had before October 2, 1985. They knew about gay men and lesbian women, but they didn’t know anyone who was actually “queer.” None of their friends had turned away from heterosexuality and chosen to be gay.
            For that was the thought then. One “chose” to be homosexual. One turned his or her back on heterosexuality and decided, because of contrariness, to be different. Immoral. Sleazy. Unsavory. Disgusting. One wanted to be "a homo." To be gay. 
            Okay. Let them choose, but let them know that they will never be welcomed in the heterosexual society that runs this world.
            And what happened to disturb those thoughts back on October 2, 1985?
            Rock Hudson—the tall, dark, and handsome movie star—died.


Rock Hudson in the movie Giant.

            Exposés followed: He was gay. He’d always been gay. Some of the most renowned movie stars—Elizabeth Taylor, Susan Saint James, and Carol Burnett among them—had known and kept the horrible secret.
            He was an active gay man and he died of AIDS.
            The news blared forth in every household in the United States where someone was reading the newspaper or watching the evening news on television or listening to the radio: Rock Hudson has died from an AIDS-related illness at age fifty-nine.
            This celebrity-conscious society in which we live collectively gasped. No longer was AIDS faceless. It now bore the face of Rock Hudson who had been called “The Star of the Year” and “Favorite Leading Man.” From 1957 to 1964, he’d been named one of the “Top 10 Stars of the Year” eight times.
            Everyone remembered him as tall—six feet five—with dark hair, incisive eyes, and a sculptured face. Now photographs in newspapers and magazines revealed him as gaunt. Frail.
            And so AIDS came out of the closet. For years, governments throughout the world had largely ignored what many had called a “pandemic.” The twentieth century had already faced one pandemic. Between the years 1918 and 1920, the Spanish influenza had swept through our world leaving dead more than 50,000,000 people. Some historians in fact estimated that number to be 130,000,000.
            In the mid-eighties, many doctors and scientists in Europe and the United States predicted that AIDS could do the same.
            By late 1985, more than 12,000 people had died in the United States alone. So here, the word most often used was epidemic. We had an epidemic on our hands and gay men were spreading it.
            Homophobes insisted that this was only gay men killing gay men. Go ahead, let them. Let them kill off one another.
            But wait a minute. What about Ryan White of Kokomo, Indiana? He wasn’t gay and yet he was HIV-infected. How’d that happen?


Ryan White at thirteen.

            The national headline about the thirteen-year-old boy with hemophilia had captured the nation’s attention ten months before—in December 1984. A public school in his hometown had expelled him because parents feared he’d infect their children. He already had the virus that would lead to death from AIDS. Parents reasoned that he would pass the infection on to their children by drinking from the same fountain or paper cup.
            In those early years of the eighties, the word AIDS and HIV-positive became commonplace. Misinformation was also common. People believed they could be infected through kissing or by simply touching a person who was already infected. Ryan White’s case made many wonder about the reliability of blood transfusions. So, were gay men and the blood they donated now killing children? Was anyone safe?
            Fear stalked the land.
            It was in that atmosphere that the book And the Band Played On: Politics, People, and the AIDS Epidemic by Randy Shilts, a journalist for the San Francisco Chronicle, was published in 1987.



            The Washington Post hailed it as “a monumental history.”
            The San Francisco Sentinel called it “fascinating, frightening, and essential reading.”
            The New York Times proclaimed that it was “a heroic work of journalism.”
            In spring of 1988, I sat on the screened-in porch of my 1870 lumberjack home in Stillwater, Minnesota, and read that book. I entered a world unlike any I’d ever known and it prepared me for the article I read later that summer in Time magazine. That article, and its use of one word, catapulted me into volunteering to work with young men who were HIV-positive or had full-blown AIDS.
            More about that on Saturday.


All photographs from Wikipedia.





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50 comments:

  1. What a life you have lead, Woman!! I so admire that you have stood up for causes and done something specific. You put your money where your mouth is. You live your beliefs. Just makes me smile to write this. Glad to know you, Lady!! :):) Can hardly wait to read the rest of this section of your life.

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    1. Dear Rita, thanks for the kind words, but mostly I just let myself think each time about what I'd feel like if such and such was happening to me, and then I just got involved. But I never stayed at anything for a long time. I seem to burn out fairly quickly. I volunteered at the AIDS clinic only three years. Peace.

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  2. You felt a need to get deeply involved in everything that touched your heartstrings--& the world is a better place because you did!

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    1. Dear Fran, thank you, but you know we all do that. Our heartstrings are touched and we do what we can. All of us. Peace.

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  3. I remember that time well and how suddently AIDS became real to the main populace. Such a devastating disease. I am looking forward to the next part.

    And, I truly hope you are feeling better, my friend!

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    1. Dear Shelly, it is a devastating disease. It is now the fourth leading cause of death globally.

      And yes, I'm feeling better. I take an over-the-counter med as soon as there is just a whisper of headache. That seems to truly help.

      Peace.

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  4. Beautifully written, Dee. Thank you for sharing and for reminding us. I also think of Arthur Ashe.

    Love,
    Janie

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    1. Dear Janie, so many to think of.

      Peace.

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  5. Dee, you are such an inspiring, strong, wonderful person. This post is very thought-provoking and I think it will open many eyes to consider viewing things differently.

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    1. Dear Elisa, you are too young to remember the time of this posting, but it was a dark episode in the life of our country. Drugs have now been developed that are making the picture different here in the United States for HIV-positive people. But the Sahara area in Africa is still so deeply affected by AIDS. I hope only that those pharmaceutical companies that make the AIDS will be generous in helping patients in Africa and around the globe.

      Pece.

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  6. I always like to mention the contributions of Elizabeth Taylor to the cause, because it was a decidedly unpopular banner to take up at the time. She never put up with the body as battlefield, AIDS as a plague metaphor..& people now(selectively) forget how backward & cruel so many well-positioned people were at the time. Many people who took up the cause years later acted quite differently in the beginning.

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    1. Dear Mary, yes. So unpopular and Liz Taylor worked ever after that for those infected with HIV. Thank you for using that phrase "body as battlefield." I've never heard it before and hope to use it in another posting.

      Peace.

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  7. I will look forward to reading more about your work with HIV victims, Dee.

    I remember these events well, and most especially how Ryan White was treated by so many. If I'm not mistaken, the singer Elton John befriended Ryan, did a benefit for him, and was with him shortly before he died.

    Isn't it amazing how powerful the pen can be? I did not read "And the Band Played On" but did see the movie based on it. I won't go any further about the content as I think you may say more in your next post.

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    1. Dear Penny, I don't remember about Elton John, but I'll go and read more about Ryan White. I think he died in about 1994. I don't know how much more I'll write about the book, I only know that it influenced me greatly, and I will share that, probably in my next posting. Take care.

      Peace.

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    2. Me again, Dee. I did a little digging around on the internet as your post stirred a lot of memories and thoughts. Elton John did, indeed, spend a great deal of time with Ryan White and sung at his funeral. What a brave man he was, even testifying before Congress on how he was treated and the discrimination he was subjected to. There is a bit more about it on wikepedia which leads to many links on the subject. en.wikipedia.org/wiki/Ryan_White

      Please don't worry about responding to this, dear Dee. You have much to do, many more comments, and your health comes first. Penny

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    3. Dear Penny, thanks for looking that up. And thanks for the link. I'll go there.

      Peace.

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  8. You leave me almost speechless at times! You are one of a kind Dee, a most special one of a kind. A magnificent post.

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    1. Dear Arleen, thank you for your kind and generous words. I've come to believe that we are all "one of a kind," each in our different way and that--as the saying goes, "we grow where we are planted." The years of my life have occurred during monumental years in our country's life and I've been a part of that. In a wee small way, all of us are Forrest Gumps!

      Peace.

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  9. I don't think there is a social condition you have not attempted to support. You have an amazing history of being where there is need! I look forward to your next installment! I never read the book, and in fact didn't even know it was a book...but I saw the movie and that alone touched me very much. I spent a little time volunteering at our local AIDS Center in the late '90s, but my contribution was mostly clerical! I'm eager to learn more, Dee. Debra

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    1. Dear Debra, I never saw the movie and in fact didn't know there was one until I read your comment and Penny's up above (lifeonthecutoff). I'll see if it's available a tthe library. Don't knock doing the clerical work. It always needs to be done, and when it's done right, life goes better for everyone. Just volunteering is such a gift to yourself and to others. Peace.

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  10. Very well written and thought provoking.

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    1. Dear Darlene, thank you. Writing it provoked my thinking also.

      Peace.

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  11. Such a wonderful and well written post that took me back to a time when AIDS was such a feared disease with only partial truths attached. You are so right. Rock Hudson put a friendly face to the disease.
    My only up close and personal with AIDS was with a woman I worked with in 2000 that contracted the disease from her husband who was a trucker that caught it from a "Lot lizzard". Lot Lizzards were the prostitutes that prowled the truckers as they parked at truck stops.
    I haven't heard from her in years as she moved but was at that time on the horrifically expensive coctail of drugs and was doing well. Magic Johnson has taught us that it can be lived with. Hopefully some day it will be gone.

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    1. Dear Arkansas Patti, thank you so much for sharing your memories of the woman with whom you worked. I'd forgotten that in the AIDS clinic the doctors used the word "cocktail" for the medley of drugs they used. Magic Johnson, like Rock Hudson, also gave a real face to AIDS. Thanks for recalling that to me. Peace.

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  12. We can never judge anyone, because we don't know their circumstances... and, we have all sinned and fallen short..
    Rock Hudson, like many gay men, was sexually abused as a child. He grew up confused.
    I have nursed and loved, two men dying with aids.One did not want his family to know what was wrong with him. The other was a doctor who moved away from his own state, so that no one would know him. I feel nothing but compassion for both of them and I nursed them with dignity.
    A woman I nursed with HIV...(pre Aids) was ostracized by the other nurses..I decided to read right back in her notes and discovered she became infected from a transfusion.Her young daughter had it also.. so sad.And so cruel of people to point the finger and condemn them

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    1. Dear Cyrstal, by the time I decided to volunteer at the AIDS clinic, I'd read enough to know that homosexuality was as nature for these men as being heterosexual was for me. So there was no judgment involved with that. And I have never had any problems with what happens between consenting adults with their bodies and in their bedrooms. But you are so on track that we must let go of judging out of any bias we have and simply respond to the need. If we could all do that, our world could be a place of harmony.

      Peace.

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  13. I am not surprised at all that you worked with HIV-positive patients, Dee. I had a good friend who died of AIDS and I was with him daily as he went through the final stages. It made me glad when he finally passed away, a mere shell of himself, but he was no longer suffering.

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    1. Dear DJan, before volunteering I didn't have any friends living with AIDS, but during the three years that I volunteered at the AIDS clinic, I went to 35 funerals and watched three men who had become dear and valued friends die. I, too, was glad when they died because they suffered so greatly. Those were such dismal days.
      Peace.

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  14. I was very little when this epidermic started.. Maybe 6th grade or so but I remember the fear. You have certainly led a full and busy life my friend. This again shows your heart, which is full of kindness.

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    1. Dear Melynda, yes. Fear was everywhere--in the voice and the hearts of everyone and on the airways. Peace.

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  15. One day in 1985, I walked on the UCLA campus with my friend Tony, a beautiful man and a great friend of many years. He wanted me to come and work for him. We'd had lunch and discussed it. As we walked, he told me that his lover was HIV infected. I blurted out: "What about you?" "I haven't been tested," he said and I knew it was a lie. I worked for him for the next 3 years. On my last day in the office, his partner died. Tony died the following year. Many, many of my friends and coworkers died of AIDS during that time. I think back with great sadness.
    Dee, do you know what a remarkable person you are? Really and truly are? Black English -- yes, I better go learn about that; inner city schools -- yes, I better go work there; AIDS -- yes, I better go see what I can do to help.
    The first book donation went without a hitch -- will email you.

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    1. Dear Inger, thank you for sharing the story of your friend and his lover. (I think it was back in those days that the term "significant other" began to be used. I need to check on that.) So many have now died. Peace.

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  16. Dee, you take my breath away with your compassion and insight. But more important than that is the commitment that you have give by your hands on involvement with the causes that afflict our nation and our world. The work you are doing now, your writing, is so important because it shows us all what we can do and how we can do it.

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    1. Dear Broad, thank you for saying that my writing today is one of the ways to share and help others. It's been several years since I've really been involved in any "outside" activity that involves peace and justice issues. So I appreciate your words deeply. Peace.

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  17. Possibly AIDS would not have gotten out of control if the powers that be had not ignored it so long.
    You are such a caring and kind person, Dee.. thank you for all you have done over these many years.

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    1. Dear Pam, yes, it was the ignoring that made the situation much worse. I'm not sure if that's still true in Africa--that the world is ignoring the pandemic there. I think that some philanthropic groups are working to get pharmaceutical companies to be more openhanded with medications for Africa. Peace.

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  18. I well remember the history you write about here, Dee. Those days were enlightening in many ways. It wasn't many years later that I learned a family member was gay, and that he had felt ashamed to let our family know of his struggles. It was hardest knowing he had felt so alone and hadn't told me, his usual confidante. I thought about volunteering with AIDS patients, but being in the midst of mommyhood with young children I didn't find a way to do it. I'll be interested to read what you post next about your work.

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    1. Dear Deanna, the families of many of the young men I saw sickened and die had some difficulties with acknowledging the sexual orientation of their sons. Mothers seems much more accepting than fathers. And I do know that many sisters--like you--were the most understanding and compassionate.

      As to volunteering. We do what we can when we can. One of the biggest reasons I've been able to do some of the things I've chosen to commit to is because I'm not married nor do I have children. So I've had time that most women haven't had.

      Peace.

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  19. Those years seem like yesterday. At that time, a friend stopped going to a hair salon because a gay man was a stylist there. She was afraid she could get AIDS from him. Hopefully, we as a nation have moved beyond such stupidity and fear. Strong post.

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    1. Dear Susan, so much confusion and fear then. Like you, I hope we've moved behind that. Peace.

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  20. I love that reading And the Band Played On spurred you to action.

    We have a similar apathetic government response with the autism epidemic. I believe the figures are one in 88 kids, one in 55 boys as of 2008.

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    1. Dear Michelle, I appreciate your bringing autism to the attention of those who will read the comments here. That's an astounding statistic. Peace.

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  21. A memorable day and cause. A friend of mine lost his partner to Aids. The doctor who diagnosed him was offensive 'you have been doing dirty things...' and the funeral home completely insensitive to his families grief. I truly hope we have moved past those days....
    Thank you - another beautiful post.

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    1. Dear EC, I had the opportunity when volunteering to be working with two outstanding physicians who were understanding, compassionate, level-headed, and truly knowledgable about AIDS. But the men I knew also had met their share of "doing dirty things." If only we could get beyond our own prejudices and respond to one another with graciousness--the same way we'd like to be responded to.

      Peace.

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  22. When nothing changes, nothing changes.. history continually repeats itself until ONE takes a stand.
    The power of ONE is enormous.
    Thank you Dee!

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    1. Dear Pam, I so agree. Years ago I read a prayer in which the pray-er said something like, "Oh God, so many people around the world are hungry. What can I do? It's too many!" And God answered, "Feed one."

      Then the pray-er went on about the homeless and the lonely and the imprisoned and the person sick with pain and each time God responded, "Visit one." or "shelter one."

      That prayer affected me deeply and I began to see that everything we do starts with one--the person who needs a listening ear is one. And I, who listen, am also one. And together we become an entity of one healing.

      Thank you for helping me remember this. You jogged my memory.

      Peace.

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  23. When I recall the movie "The Help" and how domestics working for well to do were considered unfit to use the indoor restrooms I can easily imagine the the total lack of any understanding about the disease. The lack of fast and proper education was really to blame for the ugly sweeping it out of sight and the blame game. Just remember in the '70's there was still compulsory sterilization of unwanted types and it to this day has remained an issue that has not had much coverage but lots of cover up.
    And I recall at one time we were told it was from Africa! Really? How about the fact that maybe we brought the disease to Africa? Who will ever acknowledge how it was started, where and why? That studies remain inconclusive but referring to 'Heart Of Darkness' might suggest a clue.
    That you were touched and found a way to give of yourself is no surprise.

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    1. Dear Heidi, I so agree with you about the truth of any situation. So often we can dig far enough into the hearts of others to find it. And there truly is, I believe, within all of us some darkness within our hearts that grew there because of a battered or abused childhood or an untimely death or a fear that we won't be loved. Conrad knew.
      Peace.

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  24. Coming late to this because of my computer problems, Dee. Your post takes me straight back to the early 1980s, when a young Anglican priest I knew died of AIDS, one of the first in our area. He had contracted it through blood transfusions for his chronic anaemia and no-one really knew what was wrong with him until shortly before his death. as you say, it took the very public death of Rock Hudson to bring the whole question of AIDS into the mainstream, but I still remember that young priest, at the beginning of his ministry and with so much to offer.

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    1. Dear Perpetua, thank you for sharing the story of that young Anglican priest who died of AIDS. In the early 1980s so much was mystery about this disease and so, knowing so little, fear indeed did stalk the world. So many, like that young priest, had their lives cut short.

      Peace.

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