In 1996, my parents, after seven years of trying, finally got a viable pregnancy. They celebrated the news with everyone they knew and prepared for the long-awaited birth of their first child. And on April 21, 1997, I arrived in the world.
From day one, I was not a convenient baby. I was six days overdue, apparently deciding that the outside world was too much to deal with and I would rather stay in my cozy little room. (Some things never change.) I arrived on Marathon Monday in Boston, basically the worst time of the entire year to go anywhere between Hopkinton and Boston. It was also the first night of Passover, and my mother's obstetrician was busy hosting thirty people for the holiday. The staff tasked with caring for my mother at the hospital were thoughtless, dismissive, and disorganized. And to make everything just a little more complicated, I had decided to try to exit ear-first, prompting the hospital to perform a C-section.
And then, after all the stress and drama, I was alive and in the world.
And I was deaf.
Over the years, we've wondered about that. Medically speaking, it's a straightforward thing: I have a rare genetic deletion that caused a condition called auditory neuropathy, in which my auditory nerve was underdeveloped at birth. But some of the events surrounding my conception and birth were coincidental enough to wonder at. My mother had spent the past several years learning ASL; my aunt, an ASL interpreter, visited during my mother's pregnancy and commented that she hoped I might come out deaf so she could talk to me. For me to actually come out deaf afterwards was not only a surprise, but a coincidence that threw my parents a little.
At first, we struggled, because medical professionals didn't know how to address my deafness; some didn't believe I was deaf. One nurse jingled her bracelets at me and claimed that my turning to look at her was proof that I could hear; apparently the presence of a shiny moving thing was irrelevant. Because I startled at loud noises, my pediatrician was reluctant to send me for evaluation. But finally, we were referred to Dr. Marilyn Neault, an audiologist at Boston Children's Hospital. Soon, I was diagnosed with severe sensory-neuro hearing loss (ie. garden-variety deafness) and placed in early intervention.
Even before I had a diagnosis, my parents educated themselves as much as possible on what I was experiencing and how to support me, and made sure to center Deaf voices in their research. They sought out Deaf playgroups for me and supports for themselves, and found solidarity in the company of Deaf parents. My mom often tells the story of a Deaf parent who strongly rejected the idea of "fixing" their child's deafness, because "they're not broken"; this was the attitude my parents carried with them.
I was very, very lucky in these early years. My parents' friends crowdfunded a hearing aid for me, which I immediately adored; my mother already had some understanding of ASL and were able to use it with me; we lived mere minutes from the Learning Center for the Deaf in Framingham. And so for the first few years of my life, I grew up in a community of Deaf people and educated allies. By all accounts, I was capital-D Deaf - not only deaf myself, but fully integrated into a community of Deaf people of all ages. Every morning, beginning when I could sign for it around seven months, I asked for my hearing aid right away, and I quickly became fluent in English and proficient in Hebrew, but ASL remained my primary mode of communication.
And then, without warning, when I was almost two, I started to reject my hearing aids. Worried about what it could mean, my parents took me back to the audiologist's office, where they ran the standard tests. And ran them again. And then moved me to a different testing room and ran them again. Finally, they came back and said, in essence, "Your kid is hearing things they shouldn't be able to hear and we have no idea why." At this point, we had stopped seeing Dr. Neault, but our audiologist at the satellite location we'd been going to suggested that we return to her. Dr. Neault, in turn, diagnosed me with auditory dyssynchrony, now called auditory neuropathy. In 1999, I was the second child diagnosed with auditory neuropathy at Boston Children's Hospital; in fact, the condition had only been introduced in 1996, a year before my birth. My parents spoke to Dr. Charles Berlin, one of the few audiologists in the country who had studied auditory neuropathy, and he told them that, in essence, there was no knowing what would happen next for me. Maybe I would be back to my former hearing levels the next day. Maybe my hearing would improve even more. Maybe I would just stay where I was. As of now, we still don't know what could happen tomorrow.
In the end, my hearing did continue to improve; today, while my hearing loss is still clinically significant, I am technically able to hear without assistance. I continue to have significant auditory processing delays and am frequently at a loss in particularly busy environments, but in my day-to-day life, I no longer use an assistive listening device. (I do still have one, the Phonak Roger Pen - a miraculous little toy, but one to talk about another time.)
All of this puts me in an incredibly unique situation: I am a formerly Deaf, currently Hard-of-Hearing (HoH) person who does not rely on any AAC, assistive listening device, or nonverbal communication method in their daily life. Only an estimated 1-3 in 10,000 people have auditory neuropathy, and many do not experience the kind of change that I did. The only other person I know in my situation is my younger brother, whose experience was much like mine, except that the second time around, our parents were prepared.
So what am I? I wouldn't describe myself as hearing, since I'm still solidly below average; I can't describe myself as Deaf, since I can hear without assistance. I'm definitely HoH, but in a way that's largely different from most HoH people.
Recently, a (hearing) family member who frankly should have known better informed me that, by their standards, I am not and never was Deaf. Actual Deaf people have welcomed and supported me, but there are a lot of people out there who don't believe that I count. So I've had to define for myself who I am.
In the broader disability community, we talk about what it means to carry a disabled identity and how people engage with it. That conversation changes based on the disability itself; the way I carry my autism is different from the way I carry my hearing loss. The weight of identity varies for everyone. But in most disability communities, it's pretty easy to find someone who shares your experience. Because auditory neuropathy is so rare, and because my particular experience of it is even rarer, I haven't found the same solidarity as I have in autistic spaces. And while I have a network of friends, family, and partners who support me, it's hard to navigate it when people doubt or dismiss my identity as a part of the Deaf community, because there are so few people who share my experience.
I carry my deafness with me everywhere I go. People who don't take the time to know me assume that it's not there, because I don't "seem" Deaf. I sing in a choir and take voice lessons; I listen to music almost constantly; I'm talkative and expressive. But what they don't see is what's underneath: every single day, there is an awareness in me of what a miracle it is that I can do those things, an awareness that any day now, that might change.
My deafness is not heavy. In some ways, it lightens me; knowing why I struggle with something always does. The weight of my identity does not come from me, but from the people who choose to dismiss my experience. And when those people grow too heavy, I've started to give myself permission to put them down.
So for all the other disabled folks out there who feel the weight of identity coming from the people around them: it is okay to put that weight down.
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