Not a Gay Disease

Red Ribbon

June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box.

Fear is powerful. Underneath that basic human reaction, fight or flight, resides fear. Sometimes fear precipitates unreasonable reactions. When still working for hospice, I had a client whose early-thirthies wife was dying of lung cancer. He moved her into a trailer on the property (yes, the kind with wheels) and wouldn’t allow their two young sons to see her. He was afraid that he and his sons would “get” cancer from her!

The early years of AIDS exacerbated all kinds of fear in people. Certainly, many were uninformed as to how the virus was transferred between people. Until the virus was isolated and its replicating properties identified, there was a lot of speculation about its origins and how to prevent transmission. Even in the early years, one partner could have the HIV virus and would never go on to develop symptoms for an AIDS diagnosis, while the other partner would quickly develop full-blown AIDS and die.

Fear brought to the surface many people’s fears from internal places that were already confusing for them. If I get AIDS, how will I work and care for myself? Who will be there for me? Or We have seven sons who are all All American collegiate football players. How could one be gay? Or how do I know if the blood transfusion I received after my accident wasn’t donated by an IV drug abuser?

Sometimes fear got in the way of exploring the feelings behind these more difficult internal musings. It was easier to blame and judge all gay men rather than explore one’s own conflicting feelings about the issue. It was easier to put one’s head in the sand and not practice safe sex than to acknowledge taking responsibility for one’s sexual health.

It was a confusing time with lots of new information coming out and the necessity to talk about difficult subjects.

It wasn’t long before our central coast California community was faced with an AIDS diagnosis in a child and a woman. When it was confined to “those people” (aka gay men), people could turn their backs, bury their heads, and pretend it didn’t exist. But when a kindergartner and a prominent winemaker’s girlfriend were diagnosed, people were forced to take notice.

It stirred anew fear.

Ryan Thomas was a 5 year-old kindergartner. He was infected with the virus from a blood transfusion received shortly after his pre-mature birth. He was removed from school after a scuffle with another classmate because administrators were afraid he would transmit AIDS to other students. He was later readmitted to school when a federal court ruled in his favor.

It was a huge landmark decision and one that deeply divided our Atascadero community. My sons were a few years older than Ryan and went to the same school. I was already under scrutiny by the school district because “those people” stayed with us and ate at our table. Not to mention my visibility as a female clergy advocating on behalf of people with AIDS.

As with most things, time, information, and knowing someone with HIV/AIDS helped many to transition from fear to compassion. It’s too bad so many mean words, cruel actions, and unnecessary judgment is the first reaction of many.

Next week, I’ll share about our first woman in the county with AIDS.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. I’ll keep you posted with my plans or you can email me!

2 Replies to “Not a Gay Disease”

  1. Even in the healthcare setting where we were supposed to know and understand transmission of HIV, there was fear around caring for those individuals infected with the virus.  Strict isolation protocols were put into effect and no one wanted or dared enter the room of the infected patient unless they had too.  Doors were kept closed and doctors and nurses decked out in full isolation gear with gown, gloves and masks to provided the minimal care necessary so that time in contact with the patient was as brief as possible.  Diet hosts left the food trays outside the closed door on the isolation cart and food was delivered, often cold, when someone felt brave enough to don the isolation gear and enter the room.  Phlebotomists (those that draw blood) from the labs might skip over that room so as not to take the risk of sticking themselves with an infected needle. Fear definitely stood in the way of fair and compassionate care for those who who would have benefited the most.  

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