The Largest Community Arts Project in History

During one of my recent muse-fests, which always seem to kick into high gear during my commute to or from work, I asked myself, “Whatever happened to the AIDS Quilt?”

I was really embarrassed to realize that I had no idea. I knew I’d have to find out. It loomed large in my early adulthood. I never got to see it with my own eyes, but I always wanted to. It’s funny to think that so many of the generations that came after me will never fully understand that quilt’s intense significance for so many of us.

Growing up, I always knew I would go to college. I would talk about it all the time. But some thoughts, especially as I got older, I kept to myself.

One of those thoughts was that when I went to college, I’d go buck wild (or at least the female equivalent thereof). I planned to cut a sexual swath through campus that was a mile wide. (Please understand that the idea has zero appeal these days, and that has been the case for the vast majority of my life, but back then, I sort of figured that free love was the way to go.) It didn’t occur to me that a lot of emotional pain would surely accompany such sexual carnage.

It’s a moot point though. I went to college in the early 80’s, when AIDS was a terrifying shadow that loomed over everyone and everything. The first news article about it appeared in 1981. That’s rather surprising, since only 5 cases of it in the US had been clinically reported at that time. It didn’t even have a name.

It finally got its official name in the summer of 1982, about a month after I graduated from high school. No one knew yet how it was spread or where it came from. We only knew that if you got it, it killed you.

As the medical community learned more about the disease, safe sex and periodic AIDS testing became a cultural imperative. And that, of course, was when I first went to college. My buck wild dreams were snuffed out. (Thank God, in retrospect, but at the time that really pissed me off.)

Back then, 95 percent of the people who got HIV/AIDS died, and it was usually a gruesome death. Now, if someone contracts the disease and adheres to all treatment regimens, their life expectancy is similar to that of the general population. How miraculous! I can see why AIDS seems to have fallen off the radar in recent years.

But that complacency is a huge mistake. AIDS has killed 39 million people worldwide, including 700,000 people in the US. Currently about 1.2 million people in the US are living with AIDS, and about 13 percent of them don’t know they have it.

For context, COVID has killed 7.1 million people worldwide at the time of this writing, and it was scary at its height, wasn’t it? Now, multiply that more than 5 times, and maybe you can get a small sense of the amount of fear and sadness many of us felt from the early 1980’s to the early 2000’s.

I was fortunate in that the only people I knew who died of AIDS were very distant acquaintances or celebrities such as Rock Hudson, Freddie Mercury, and Anthony Perkins. But you have to understand that some people lost dozens and dozens of friends to this disease. After experiencing that much trauma, those people will never be the same. AIDS has left quite a bit of emotional scar tissue on this country.

Back then, AIDS was a disease that politicians didn’t want to acknowledge, and the general public considered it to be a source of profound shame. It is awfully hard to grieve people you love under those circumstances. Due to the stigma of AIDS, quite often the people who were dying didn’t get a funeral. In an effort to give comfort to all those who had lost someone they love, the AIDS Memorial Quilt was conceived.

Cleve Jones, a human rights activist, came up with this brilliant idea. To remember a loved one, you could create a panel for the quilt that was 3 feet by 6 feet, which is similar to the size of a coffin. You could get creative with these panels, to reflect the personality of the individual you are memorializing. You could do anything from fine needlework to iron-on patches to spray paint to tye dye. The AIDs quilt project would then stitch your panel together with 7 other panels to make a block.

They displayed this quilt in football stadiums and city parks all around the country, and as it got bigger, it covered the entire National Mall in Washington DC, and then some. They loaned individual blocks out to various community organizations to keep the AIDS conversation going. I’m sure that if I had seen it in person, it would have moved me to tears.

So many people. Loved. Gone.

That brings me back to my original question. Whatever happened to this important memorial that was created by thousands and thousands of grieving people? It was easy to find out in this age of internet.

It seems that the AIDS quilt is still going strong. I have mixed emotions about that. I’m glad that people still have this source of comfort. I’m glad these memories will be preserved. I’m thrilled that you can still contribute a panel to the quilt if you so desire. I’m just heartbroken that such a thing ever had to be made in the first place.

Currently, more than 50,000 panels have been sewn to memorialize 110,000 people lost to AIDS. The entire quilt weighs 54 tons. And each panel came with a letter talking about the person who was being remembered. The nation now has a huge archive of these letters, and you can read some of them online here.

When the quilt isn’t out on display in the community, it is now housed in San Francisco, in Golden Gate Park, at The Grove, which is now the nation’s only federally designated National AIDS Memorial. I’m glad the quilt found a good home. I’m glad it still raises awareness of this horrible disease. But it saddens me that I haven’t crossed paths with it in all these years, and haven’t heard anything about it for so long that I wondered if it even still existed.

Oh, but it does, though. And the most exciting part is that if you can’t see it in person, you can now see it virtually, panel by panel if you like. You can even search for a name, and if it’s there, your computer screen will go right to that panel.

Just out of curiosity, I did a search for Freddie Mercury, and discovered that 30 different panels were dedicated to him. He was so loved. And when all is said and done, love is what this quilt is all about.

Additional sources:

The ultimate form of recycling: Buy my book, read it, and then donate it to your local public library or your neighborhood little free library! http://amzn.to/2mlPVh5

The View from a Drawbridge

The random musings of an autistic bridgetender with entirely too much time on her hands.