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