Today I want to tell a story.
I want to tell this story because, while I’m not a specialist in disability studies of any kind, I’m a disabled person, and following the work of those specialists has lately really helped me understand my own stories.
I’m hard of hearing. My sister has exactly the same hearing loss. Our charts are almost identical. It’s congenital; we never lost our hearing at all. We were born this way. But we didn’t always understand that.
My sister is seven years older than I am, and, like many children, she had ear infections when she was very little. The hearing loss was discovered after an ear infection, so it was assumed to have been permanent damage from that. No big deal, it happens all the time, and it’s a very minor hearing loss, correctable with hearing aids. Speech therapy may or may not be needed (it was not).
I never had a childhood ear infection. My hearing loss was discovered when my mother noticed that she could do things with my brother that she couldn’t do with me, and those were the same things she also couldn’t do with my sister. The big thing was that she could speak to my brother through a closed door and he would understand; we would not. So she had me checked out. The doctors were immediately intrigued when they noticed that my chart looked exactly like my sister’s, but I’d never had the infection; their initial assumption must have been wrong. But there’s no family history, so it was even more confusing. I got a lot of tests done with doctors literally saying “It should be interesting” as their main justification.
But still, no big deal. Same as before, correctable with hearing aids. I’d already started speaking at the time, so they didn’t really raise the possibility of speech therapy; I was clearly doing ok without it. I was initially a little scared the kids at school might say something mean, but they didn’t. We were in kindergarten, and they’d never seen hearing aids before, so they asked me if they were earrings, and I explained and, in the way kids do, they said “cool” and moved on.
At some point, I don’t remember what year, but it had to be within two years, we read a book in class called A Button In Her Ear. It was about a girl who needed a hearing aid in one ear, which seemed odd to me, but I understand is actually quite normal. It was one of those books you give a kid to learn about people who are Not Like Them and encourage them to see diversity; all in all, not a bad thing.
The book described in great detail how she had to wear a box that strapped to her body, which had an earbud-like speaker on a wire that went into her ear. It talked about how she adjusted at school with this hearing aid of hers.
This was a book I was supposed to see myself in. But I didn’t. Her hearing aid didn’t look anything like mine. It was entirely unrecognizable to the beige things tucked behind my ears. There was no way that my classmates would look at the girl in the book and see me, or the other way around.
I was rather annoyed, but not really offended. I would have been bothered, and maybe have even said something to the teacher about it, if I hadn’t already been safely grounded in my own disability history. But as it was, I already understood what I was seeing, and that the problem was simply that the teacher’s sources were out of date.
You see, we spent a lot of time around Walter Reed hospital when I was a kid (yes, that Walter Reed). My brother was born with complicated health needs, and of course my sister and I needed regular audiologist checkups too. It’s some of my most vivid childhood memories. Next to the hospital, there was a medical museum, and every time we went to the hospital, I’d beg mom to take us there as a treat; often she would. Both at the museum, and in displays in the hospital itself, I was able to understand my family’s unique medical situations in terms of broader medical history.
At that museum, I was confronted with all kinds of medical history and curiosities. There was a trichobezoar (hairball) taken from a 7-year-old girl’s stomach after she sucked on her hair too much (I immediately quit sucking on my hair; probably a good move). There were organs and other anatomical displays. There were assistive devices from every period of history.
And it was in that museum that I could ask my mother important questions about my own body, about my brother’s conditions, and about life in general. I remember a conversation in that museum about where dreams and nightmares come from, for instance. It made all the medical things make more sense, and it made them less scary. I could see how much better it was now than it might have been just twenty years before.
And not only was there that museum, but in the waiting room for the audiologist, among the austerity of a military hospital, there was a display case in the same style as the museum. It held hearing assistive devices through time. It had ear trumpets and horns. It had my own behind-the-ear hearing aids and the half-shell and full-shell in-the-ear hearing aids that I recognized from the audiologist’s pamphlets and posters. And it held that black box and button on a wire from the book.
And each was was fixed with a neat plaque explaining what it was, how it was used, and when it was used. I can’t remember, but it may have even mentioned key inventors. At any rate, it was a very well curated exhibit; it fit the space and kept me fascinated while I waited for my appointments, and in the process I learned about my own social context.
And it prepared me for That Book. By the time we read that book in class, I’d practically memorized that little case of hearing assistance devices. I knew exactly which one in the case they were demonstrating in that picture book. I knew exactly what time period that book represented. That book belonged to the 1970s, when my parents were just meeting each other, not to the 90s where I lived. I knew that what that book showed was maybe the lived experience of hard of hearing people who were adults now, the adults who were my parents’ age and older, but I also knew it did not, and never would, represent my experience as a hard of hearing person.
I didn’t complain to the teachers, although I’m sure I mentioned to my friends how the book wasn’t at all what it’s like to have a hearing aid in the present. At some level I knew we were reading it to be taught diversity, but I understood it better as a history lesson.
No, I was much more bothered by the pamphlets at the audiologist, and the directions that were sent home with my hearing aids. They were slick, full color marketing style pamphlets by the hearing aid brand (I believe that one was Siemens; I’ve had a few brands by now). And every single one of them featured gray-haired elderly people listening to grandchildren or going to church. Nowhere in the pamphlets could I ever find a face that looked like mine, in any sense. Nowhere in the pamphlets could I ever find any mention of congenital hearing losses; it was all implying that this was a new thing to the hearing aid user, and that it would somehow restore something that was lost.
No, I wasn’t angry at the book or my teacher for being outdated, because I’d been given the historical tools to contextualize what I saw. I think without a solid grounding in my disability’s history, provided by those well-curated exhibits and ample time to browse them waiting for appointments, I would have been bothered. I would have felt erased. But, as it was, at least the book tried to acknowledge that people like me, who have their hearing losses from day zero, exist. It was in the face of the pamphlets I was given to understand my own assistive devices, which I understood as the very finest technology the military’s medical insurance could provide, that truly I couldn’t find myself at all. And I thought at the time what a lost opportunity it was, because I thought of all those ads on TV trying to assure elderly people that there’s no shame in having a hearing loss. What if the hearing aid companies had fronted a smiling seven-year-old like myself as the hearing aid user? Wouldn’t that have addressed the “hearing loss = getting old” stigma and offered kids like myself representation at the same time?
But the frustration at the rhetorical failures of hearing aid marketing is a discussion for another day. As it is for this story, I want to say that I’m very thankful to that medical museum, and especially to that little display case in the audiologist’s waiting room. It taught me my own history. It helped me know what was right.