for the Hard of Hearing, the National Association of the Deaf, the National Institute on Deafness and Other Communication Disorders, and any hospital or advocacy group I could find with something else to tell me. On a pad of paper next to my keyboard, I scribbled questions.
âWhat is an ABR?â I wrote on the night I focused on hearing tests. Under that, I noted âbone conduction?â
The next day, I was fixated on assistive devices. âWhat is an FM?â I wrote. âWhat do hearing aids for a little guy look like?â
âASLâwhere?â I wrote on another night.
Quickly, I learned just how much variety the terms âdeafâ and âhard of hearingâ encompassed. Audiologically speaking, hearing loss could be categorized as mild, moderate, severe, or profound, but its specifics, measured in thresholds and frequencies, were nearly as individual as fingerprints. To divide the world into deaf and hearing seemed like calling a thoroughly mixed-race society like Trinidad or Brazil simply black and white.
However much a person could hear, there was another, more personal distinction: how that person chose to be identified.You could be deaf or Deaf. A small âdâ referred to the audiological condition of limited hearing; the big âDâ indicated someone who was part of a group that shared a languageâAmerican Sign Language in the United Statesâand a culture. The distinction reached far beyond spelling; it was the difference between thinking about deafness through a medical model or a social model, the difference, as Andrew Solomon later described it in
Far from the Tree
, between illness and identity. There was a long list of terms and ideas to run through this filter. âHard of hearing,â which I initially thought old-fashioned, was the preferred term within the Deaf community for someone with residual hearing. âHearing impairedâ was commonly used in medical pamphlets and some government literature, but the National Association of the Deaf (NAD), the primary advocacy group for ASL and Deaf culture, viewed the term as âwell-meaningâ but ânegativeâ for its emphasis on what a person
cannot
do. On the same grounds, they objected to the term âhearing loss,â although it can be hard to talk about audiology without using that term, I find. You need a noun. Another common distinction concerned the age of onset of deafness. Adults who lose their hearing are âlate-deafened,â indicating an early life lived in the hearing world. And then there was âoral deaf,â the category of deaf and hard-of-hearing people who chose to communicate through âlistening and spoken language.â They had an advocacy group of their own, the Alexander Graham Bell Association (known as AG Bell)âan antagonist, it seemed, of the NAD.
Later, when I got to know some deaf adults, they repeatedly told me, âThereâs nothing âwrongâ with Alex.â It was a thought-provoking and startling statement, as if I saw the sky as blue and they saw it as green. As soon as they said it, I saw the dangers of the word âwrong,â its potential to wound. I hadnât meant it as a broad pathologizing of my precious son but very specifically that there was something in the way Alexâs ears worked that prevented him from hearing and that might prevent him from learning to talk. And I meant that that fact worried me. Deaf culture used a completely different vocabulary to describe the same set of facts. Or maybe it was describing a different set of facts. Our perceptions are based on our own experiences. I once read abouta tribe in Namibia whose members distinguish between shades of green more easily than between green and blue. Could it be that in a hearing personâs view the sky of deafness appears to be blue and for Deaf that sky looks green?
âFor hearing people, the world becomes known through