HIV: Then and Now – My Recollection

I was chatting with someone the other day about a documentary I had seen about swinging in the 70s – specifically a swinger’s club in New York City. (American Swing is the name of the movie if interested.) What it reminded me of was the early days of the HIV/AIDS epidemic.  This is when the club in NYC along with all of the bath houses were shut down by the health department because of the fears of the epidemic.

For those of us who grew up during this period of time, we all can recall the widespread fear about the disease. In essence, it was like they woke up one day and realized there was a fatal disease that has been in our blood supply. No one knew where it came from or how far back it had started. It mattered, but really didn’t matter – it was here and no one understood how it got there. Or more importantly how exactly it was transmitted. AIDS was everywhere – every news cast, every newspaper, every magazine. You think SARS or Bird Flu or Swine Flu media was bad, nothing compared to how I remember the AIDS epidemic.

Kids who contracted the disease via blood transfusions because they were hemophiliacs were being chased out of schools. And in some cases, their families were being chased out of town. Their homes were being vandalized and burned. I remember one family in particular had three little boys – all with this hereditary blood disease – getting harassed for having contracted HIV via the many blood transfusions that saved their lives. These kids could not get a bruise without worrying about bleeding to death – and now they couldn’t walk down the street without worrying about their own safety. While we may all get annoyed at times with the HIPAA laws in terms of finding out how someone is doing in the hospital, let’s just say that some of the people who were diagnosed would have loved those laws back then when their medical history was being released like crazy.

The fear factor all went back to the fact people truly did not understand how HIV was transmitted. If it was transmitted via blood, could it be transmitted other ways? Those of us who lived through this time period recalls all of the speculation and misinformation that circulated. There were some that theorized it could be transmitted via the air like a cold. Via passing it along like germs on a door nob or when you shook hands with people or gave them hugs. Kissing – even a peck – could pass it along. Often times people who were diagnosed with HIV/AIDS were shunned to the point where they died alone. People were too afraid.

Who got AIDS according to the media during this time? Why the gays, of course. Gay men were perceived to be the main carrier of the disease. It was all of that anal sex they were engaging in. Contracting the disease when you were not a hemophiliac brought into question sexual orientation. I mean, if you were a man who was out having unprotected sex with any woman who would have you and you contracted the disease, it must mean you were also having sex with men. That’s all it could mean at this time. That or you were a drug user using dirty needles. Almost forgot that was the other assumption. Think about that in terms of which you’d rather be labeled.

With all of this misinformation out there, it was very difficult to correct it when the real information did come to light. As they started learning about how it was and was not transmitted, people were skeptical. I mean, how could they know for certain now what they didn’t know at all before. Wasn’t it better to be safe than sorry? Because getting HIV at this time was a death sentence.

I have to make one comment before I continue writing this as I keep catching myself doing this as I am writing. During the early days, we only knew this disease as AIDS. In retrospect, I believe this took off because by the time people were diagnosed with the disease, it had already progressed into AIDS. HIV was only starting to come into the nomenclature in the early 90s. I mention this because those of us who lived through that era can slip and use the two interchangeably even though we know they are not. It is not ignorance – it is simply a realization, to me, how ingrained AIDS was in our media and culture at the time versus how it has changed today.

As I have mentioned before, I grew up in a very rural part of Iowa during this time. A very rural and ultraconservative part of Iowa. Let’s just say that some of the craziest conservatives in the state were well supported in my part of the state. So, the fear of AIDS was prevalent. I remember hearing the adults around me discussing what they would do if they found out one of those AIDS patients was in town. They agreed with the media that reported the towns running people with HIV out of town. And the kids mocked the parents in terms of spreading the misinformation.

That changed when I was in high school – freshmen or sophomore year, I believe. The school had hired a new PE teacher who was tasked with making PE into a Health and PE curriculum. She was from out of the state – east coast if memory serves – and she took the job she was given quite seriously. Especially when she saw how much sex was being had and binge drinking was going on that usually led to a lot of teenage sex being had. Unit #1 was STDs and Safe Sex.

I have to applaud her. She structured this unit in such a way that no one even flinched at her giving it. She stopped short of giving out condoms which would have likely gotten her fired in a second, but she taught facts. It was probably the best information I ever received about HIV and other STDs even when I was in college being talked to by hired sex educators. In fact, I was able to educate people on it better than they were in some cases.  At the end of the unit, we all knew the difference between HIV and AIDS. We knew as much as was available at this time. Keep in mind, we were only approaching the late 80s. There was still a lot to be learned about the disease. But the things we did all learn. Hugging didn’t transmit it. Anyone could contract it through unprotected sex. And condoms were for more than just a form of contraception. 

I attended a small liberal arts college in a different part of Iowa that I think had standing safe sex lectures including HIV education every few months. But it was the gentleman who came and spoke on World AIDS Day my junior year that made the largest impact in terms of how this fear and misinformation hurt those with HIV. I remember this man in his mid to late 50s standing on this huge stage with a microphone telling how he and his brothers were hemophiliacs. He described being a child with the disease, and the blood transfusions that saved his life. He painted the picture of a family that struggled between being controlled by this disease and controlling it. He talked about the day he met this beautiful woman who would become his wife and the mother of their children.  He told us about getting sick – his brothers also getting sick in the early 80s. The diagnosis of the disease in both him and his wife.  And holding his wife as she died. He talked about the guilt he felt knowing he unknowingly gave her the disease that would kill her. How he watched his brothers die, their wives, and some of their kids from this disease. Yet, he was still standing.  By this point, there was not a dry eye in the place – including his own. He was a man standing in front of all of these college kids and professors and faculty telling this gut wrenching story – straight from his heart.  He really didn’t lecture anyone. He said he has educated his kids as best he could. He felt blessed they were all okay – testing negative for the disease. But he let the story deliver the message – a message of pain, hope, compassion and sorrow. For many of us in the audience, this was our first brush with someone with the disease.

Today, we have several friends that are living with HIV. One friend just celebrated his 10 year anniversary of finding out. When you talk to him about it, he will be the first to tell you that the invincibility of youth is what got him the disease. He truly believed it could never happen to him, so he took risks – and lost. He also had the misguided notion that as a gay man topping that he could not get the disease. Gotta love the misinformation that is still out there. Thanks to the new drugs, he does not fit the image of an AIDS patient circa 1985. He along with several other of our friends played rugby with Garbanzo for years. I once asked Garbanzo if he ever worries about it. His response was that he started playing the “what if” game with himself, but stopped when he realized anyone on that field could be HIV positive. He just knows that there are certain guys on his side to avoid if there is blood. And those guys were very cautious about it – and made it well known to not help them out without gloves and such if there was blood involved.

It amazes me how far we have come in terms of this disease – not only in our understanding of it, but our reactions to it. I think my only fear going forward is the lack of information that is out there to teenagers. Since it is a livable disease now, I fear they are taking risks as the last data shows a jump in HIV diagnosis. While the prognosis is not the death sentence it once was, I think education should point out that the HIV drugs that are working wonders for those who are diagnosed are not fun. They are not easy to get used to taking. They have fun and exciting side effects that people with the disease have to live with if they want to live. HIV has become a manageable disease, but it is still not easy. And there are no guarantees with these drugs as they don’t work the same with everyone. Again, things I’ve learned from our friends living with the disease.

Going back to the video and the NYC sex club that was closed during the start of this widespread panic. The swingers they interviewed involved in the club all spoke openly about the STDs being transmitted in that place. There was no concept of safe sex on any level. So condom use was pretty much nil. Outside of the dance floor, all areas were play areas. And no one had a concern about cleaning up after sex. It was a free for all. One woman talked about how you could feel the lice crawling on your body in some of the rooms because who knows when the last time the mattresses were cleaned. It was just a giant petri-dish of possible disease. And when asked, the people being interviewed never thought at the time of getting tested for STDs or even how to reduce their risks of contracting these diseases. It was all about birth control. While the overreaction of the Health Department closing the club in the early 80s seemed extreme, it was probably for the best given who knows what was spread in that place. Anecdotally, a lot.

Today, you can’t visit a swinger profile without seeing someone make note that all people playing “must be drug and disease free”. TL’s comment after his statement on his profile always makes me smile because it’s so true: “It just messes with everyone’s fun”.  If someone has something, many times they are right out there and open with what they have. When the new on-premise swinger club was being designed, I remember their email list being full of discussions about materials best suited for keeping everyone clean and sanitary. Rules being created around things like squirting and off limits play areas. Condoms are a must – and EVERYWHERE. There is usually never a shortage at these clubs…or at house parties….or even during playdates. What a difference 30 years and an AIDS epidemic makes in terms of swingers and how we play and what we are concerned about.

Now if only we can dispel the broader images of 70s swinging from the minds of people who think of today’s swingers as they were back then. I mean, swingers who aren’t naive will flee a party if they see bowls of M&Ms next to the condoms……just the thought makes me shutter.

3 Comments Add yours

  1. Joker_SATX says:

    My cousin died of AIDS…well to be technical, he died of Pneumonia that he could not fight off because of the AIDs virus. This was a shock to my family as we were all of the Hispanic culture. You just did not get that in the Hispanic Culture and you were not Gay…end of topic.

    Looking back, since he and I were close my parents always yelled at me for hanging around him. I used to yell back and let them know that they were ignorant on the matter.

    Needless to say, my cousin never regretted a decision he made.

  2. I well remember those by gone days. We had just tested swinging when it all started. We always practiced safe sex as did all of our friends. We once tried to organize a small group who would all get tested and if disease free be ask to join the group and then would agree to only swing with in the group. Thankfully this group did not form. I say thankfully because I am concerned we would have let our guard down and where would be today. Maybe not still disease free.

  3. Hubman says:

    Growing up in the NYC suburbs when the AIDS epidemic started, I have to disagree with some of what you call misinformation. It DID start with gay men and they were the primary victims in the early days. From there it got into the blood supply and into the non-gay-male population. At least, that’s MY memory of it!

    My mom was completing her masters in social work in ’86 or so, and worked at a hospital in Brooklyn counseling family members of AIDS patients- the fear they had, through simple misinformation, was really unfortunate and probably cost them quality time and interaction with their sick loved ones.

    If you haven’t already, you should read “And the band played on” by Randy Shilts (sp?)

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