AIDS is something that slowly absorbed into my awareness, despite a lot more barriers to comprehension than the average child would be dealing with. This is my best rendition of my child’s understanding, looked back on with adult eyes.
I was a child when I first heard the word AIDS, and like most words at the time, I didn’t understand it but it recorded itself in my memory. Well — not AIDS as a single word, but rather the full phrase AIDS antibody test, which ran together in my head because news reporters repeated with a tone to their voice that meant it was important. I stored it as important with no comprehension of any of the three words.
Later, it became important in another way. I was learning to use words with minimal understanding. I had worked out a rule I could use — if a word seemed to be used in many different contexts and have vastly different effects, I would not use the word. Aides were people who existed in the classroom, aids were something else entirely, and AIDS was a word you heard all over the place. I didn’t know they were different words, or how they were spelled. I didn’t do this with all sound-alike words, but only ones that fit certain patterns I still can’t articulate. I just knew better than to say any of them. So for many years, I never said aides, aids, or AIDS.
On the playground, children ran around tagging each other. As they touched each other, they’d say “Tag, you’ve got AIDS. Tag, you’ve got AIDS!” It wasn’t like regular tag. Each child would run around touching other children one by one on the arm, saying “You’ve got AIDS,” and then some of those children would run around doing the same thing. They weren’t playing tag, they were playing a plague game.
As I got a little older, I learned a little more about what AIDS actually was. My mom’s friend Matt (not his real name) from work got AIDS. In the process, he was outed as gay at work. This was a hospital, everyone involved were healthcare workers, and he had tons of friends there. By the time the dust settled, my mother was his only work friend.
I didn’t spend much time with him, but we did go with my mom up to Filoli Gardens once. It’s the only time I’ve ever been there, and I will always associate it with Matt.
I was a child and I picked up child things from this. I didn’t know what gay meant — it was another word I would not use because of multiple meanings that fit a certain pattern. I saw that he looked sicker and thinner every time I saw him, and one day my mom said he was dead.
I remember Ryan White, a boy with hemophilia, contracting AIDS from a blood transfusion, and hearing on the news how he was shunned by his entire school. I remember him dying in 1990.
I was a little more able to understand things by the time Guy Nakatani started speaking at schools, including two schools I attended. I still didn’t understand the moral weight people gave to AIDS or being gay. Guy Nakatani had AIDS and talked about its effects on the body, and the effects of the treatments back then on the body, and that much I could grasp. I remember him saying that he would talk about anything about AIDS except how he got it. He said that people divided people with AIDS into innocent victims and deserving victims, and that he didn’t want to say anything that could put him on either side of the divide. I didn’t understand the reference. I’m pretty sure the other kids did.
I remember the second or third time I saw him at a school. He was so thin he couldn’t sit down. I had read in the paper that he doesn’t disclose how he got AIDS, and his reasons. The paper had then gone on to say he’d gotten it from gay sex. I understood enough to know this was horribly cruel and unfair.
I was in high school now. I had some idea what gay meant. I did not understand my own sexuality yet, but it gave me great amusement to learn that the only person friendly to me in that school was also gay and in the closet. Everyone thought we should be dating, or were dating. Nope. I’d come out as bisexual in a year or two as one of the first steps in my coming-out process, which I know makes me a tired stereotype but it’s what happened. I’d be 19 before I could say the word lesbian about myself, and that was a long way off. And even longer before I could articulate anything even vaguely coherent about gender.
There was one openly gay boy in my high school. I heard everyone talk about him when they thought I wasn’t listening. They said that he only was out for attention. They said he read gay magazines in the student lounge for attention. He transferred to another school across the country. Then he ‘burned out’ and had to come home. I later wondered how much homophobic bullying had to do with that.
Likewise, there was one openly gay guy in a student organization I’d drifted into. (I drifted into a lot of things at that age without a lot of intent or agency involved. I understood a lot more, but was hiding at least some of my continuing incomprehension without actually trying. It’s just how I operated. And I ended up doing everything from joining organizations to choosing majors in this manner.) It was kind of like a debate club.
I remember there was a debate about gay marriage. And he said he wanted to meet a beautiful man and then marry him. That line from his speech, and the emotion he said it with, was the only one I understood. But I understood it. I heard people gossip about him, too. They said he wouldn’t be such a big deal in the organization if he didn’t use being gay to get attention. Like when I was younger, I didn’t evaluate those statements for meaning for many years. But I remembered them, and I still remember them. For what it’s worth, as is obvious, I couldn’t disagree more.
So Guy Nakatani came to our high school, just as he’d come to my middle school. It was just after that horrible newspaper story had been published. He looked exhausted, weak, and sick but he wanted to continue educating people about AIDS for as long as humanly possible. He tried to do so.
I don’t remember most of the questions, but I remember one One student raised his hand and said, “How did your parents react to finding out you were gay?”
Guy Nakatani was silent. The whole room was silence. There was just an eternity of awkward, stony, defiant silence.
And then things moved on.
I later read in the paper that Guy Nakatani had died.
And apparently, however they reacted at first, his parents came to see it as their mission to promote loving acceptance of having gay children. But I could feel the burning horrible invasiveness and unfairness of the question when it was asked. And I could feel his equal shock and defiance in response. He seemed to be trying not to cry.
In health class at school, when they covered the topic at all, they tried to tell us everyone could get AIDS and everyone needed to use comdoms. One day, they had a gay couple come in. One of them had AIDS, one didn’t. They were sexually active, with protection. Later I heard both kids and adults condemning them.
That same year I saw Guy Nakatani the last time, and after I’d crashed and burned and had to drop out of high school, my mom told me that her friend’s daughter had just died of AIDS. She wanted to get rid of all her clothes, and wanted to give them to me.
I thought at first that her mom had just given me all of her clothes. As in, all her clothes from her entire life. Because there were clothes that seemed like they were for children. Young children.
My mom explained to me that the clothes that were too small for me were because she’d gotten so emaciated towards the end of her life that she had to wear children’s sizes. I never forgot that. And I always remembered her when I wore her clothing, even though I didn’t know her and never met either her or her mother.
Objects tell stories of their own, and they talk to me better than words do, so I have never forgotten her. I wore her clothes and I wore her shoes, and I still wear a pair of shoes in the exact make and style of the ones her mother gave me.
I only dimly registered the major AIDS battles that were heating up the country and the world throughout my childhood. I didn’t know about ACT-UP, although I’m sure I heard of their activities in the background and didn’t connect them (I did a lot of that). I didn’t have the opportunity to look for information or ask questions, I didn’t drift in that direction. But as I drifted through life — which is what I did back then — I drifted near enough for AIDS to penetrate my awareness for as long as I can remember picking up on words at all. And it’s weird the things you remember…
Remember that history is made out of each of us all put together, ordinary people, and what we remember of it is important. I may not have understood everything being said and done around me, but I absorbed it all. This may be a bit of a dismal post for Pride Month, but this is what I grew up with. This is part of our community’s history. And it’s important to remember it all.