World AIDS Day and Me
Today, December 1, is Worlds AIDS Day. This image with hearts, love, butterflies and peacocks is dedicated to all affected by HIV/AIDS – which means just about all of us. You probably don’t know I was an AIDS activist for 15 years … I poured much time, love and energy into educating people about AIDS – both to protect themselves and also to help the public understand and be respectful toward people with HIV/AIDS.Â Back then there was terrible prejudice … even though there is still, back then there was terrible talk. I started this work in the first few years of the epidemic (1985).
Hearts I, Digital Â© Diane Clancy
I will tell you my own story on this day when people all over are blogging about HIV/AIDS – you can get the facts from many places.Â When I started to feel a little better and could think past myÂ pain and illness, I looked around to see what holes there were in the community that needed some attention.Â HIV/AIDS was there loud and clear.Â There was nothing locally and people didn’t even think rural people could get it.
So I started organizing and working with others to create a community group.Â We went to churches, schools, panels, whereever we were asked to talk with others to make our community a better place.Â We actually had a 24 hour hotline – we even got calls from a jail in Georgia (we are in Mass). A prisoner had our card in his pocket and we talked with both the prisoner and the prison staff – to help them understand which risks were real and which imagined.Â We had calls from California and Canada too. This was a little volunteer operation that was in my house.Â We forwarded calls to different members as we took shifts.Â Jack took most of the calls though – he was incredible.Â He has passed on … from other disabilities, not HIV/AIDS – but he was there … working his heart out!Â Thank you, Jack.
We wrote pamphlets for classes of people where there was no information yet.Â We wrote up a resource manual for services in our 26 town county – like which doctors WOULD treat people with HIV/AIDS – and also knew what they were talking about.Â We went to hospitals to visit people who were sick.Â We supported families whose child had come back home to die … and no one else would go to funerals.Â We befriended people who moved here and knew no one else.Â We did whatever we could see to do … both to support people with HIV/AIDS and because creating this atmosphere gave our community a better quality of life for us all.
One person came up to me after I spoke on a panel and disclosed he was HIV positive. We ended up forming the nucleus of a very tight, small group of people with HIV/AIDS – and me.Â Many of you know I have Crohns Disease.Â This tight group of friends gave me something I will always cherish. This was the first time I had consistent support from others who knew what it was like to be facing death due to health issues.Â There is a lot more support now than there was back then. The friendships were deep, crucial and gave me a sense of being understood that I had never had.Â Some have died and some are living life with a chronic illness that is very treatable due to the newer medications.Â But that is not what it was like back then … HIV/AIDS was seen as a death sentence then.
One thing that moved me to focus on HIV/AIDS is the way oppressions all come together.Â Homophobia, racism, sexism, classism, ablism, agism, recovery issues … these all come together and intersect with HIV/AIDS. Back then, people thought women couldn’t get HIV/AIDS (except by needles); people of color were being told that HIV/AIDS wasn’t their issue; the beat goes on.Â I found it a way to be able to shine light, love, freedom and justice on many issues at once – one of my favorite things I have done in life.
In the US, HIV/AIDS organizing has become very different than it was back then.Â We helped bring money into the region to bring services to people with HIV/AIDS.Â This was needed … and at the same time it changed the dynamic from the intensely personal and involved connections to more social service connections.Â Something was gained and something was lost.
Tomorrow I am going to write one more day about this – in terms of the way we organized … it is the foundation of how and why I spend my life connecting with others in this way.Â Wow!! This connects into the issues I have been writing about – cool! Thank you for coming by!
~ Diane Clancy
Technorati Tags: Worlds AIDS Day, HIV/AIDS, oppression
Thanks for sharing your story Diane. Hugs!
Very emotional and very welcomed. Thanks for this blog Diane.
Thought provoking. Thanks for sharing.
Thanks for sharing your story, Diane.
What a touching, moving story! Very inspiring– thanks for sharing!
Thanks for sharing this, my daughter is an Occupational Therapist working at the Mildmay Hospital in London, this is a specialist HIV/AIDS hospital, she was at the World Aids Conference in Mexico in July with an Art display which has been done by her clients, showing what it means to them to live with HIV. I am sending your link to her, at least I will try, I’m not very good at that !!!!!
Diane, what a wonderful story of support and care….
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A great message which motivates people how to help those who are affected by HIV.
Back then there was terrible prejudice â€¦ even though there is still, back then there was terrible talk. I started this work in the first few years of the epidemic
I am sending your link to her, at least I will try, Iâ€™m not very good at that
HIV. I am sending your link to her, at least I will try, Iâ€™m not very good at tha
Back then there was terrible prejudice â€¦ even though there is still, back then there was terrible talk. I started this work in the first few years of the
A competent but not necessarily technical person can have an idea and by
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