Deafness: Is It Really A Disability?

In college, I was taught about two approaches to deafness: the medical approach, and the cultural approach. Essentially, the medical approach regards deafness as something to be fixed or cured; the cultural approach regards deafness as something to be embraced and celebrated. Now, I won’t lie: after years of fighting to be “normal,” the Deaf community was a welcome respite that helped me solidify my identity outside of my hearing loss. But that niggling feeling remained: it wasn’t the whole story, especially when it came to job-hunting.

Deafness is pretty unique in that it’s one of the few disabilities that affords near-complete independence. We can drive, we can move around, we can hold down jobs in any physical and intellectual capacity. The only thing we– most of us– struggle to do is communicate in a hearing world.

Unfortunately, that last one is a pretty big deal, especially in networking and securing employment; or in seeking information and education. It’s much like being a perpetual foreigner– without communication, you miss out on language, social cues, and local culture. And not everyone is willing to accommodate, or they don’t know how.

In part, that’s what gave rise to Deaf culture. At various points throughout recent history, a bunch of deaf people got together, worked out their own communication and social norms, and out of it came a distinct language and culture. Over time, a social network for education and employment also developed– it wasn’t and still isn’t uncommon for Deaf people to find jobs in residential schools, ASL courses, and municipal social work.

Outside of those niches, however, our options become… more complicated. A whole lot of  service and sales professions– for example, reception, hospitality, and nursing– rely heavily on verbal communication. At least, as most people understand it. Mind you, several deaf people have found workarounds for succeeding in these types of jobs (many of whom are cuers!)*; often, their biggest challenge lay in convincing their employers that they could do it, albeit in a different way. Quite a few have just gone ahead and started successful businesses, notably in Austin, Texas.

These people, however, are a bit of a rarity.

A paradox: if deafness isn’t a disability in most senses of the word, then why do so many of us end up on SSDI? Or worse, straddling the poverty line?

Any objective measure comes up with two answers:

  1. Deaf people struggle to access secondary information in an auditory environment. We don’t usually overhear things like hearing people do; direct communication is how we learn and retain information. This has major implications for education.
  2. It’s harder to convince employers to hire and retain deaf employees at a living wage. We take longer to find jobs, and we get promoted at slower rates.

The best reconciliation I’ve heard for that paradox so far came from this Australian deaf blogger,** who defined deafness as a social disability. Once I thought of it that way, all those niggling pieces in my mind finally fell into place. See, one of my biggest hurdles in the Great 2014-2015 Job Search was networking at social events and job fairs. Imagine a patchwork conversation like this:

Me: So what kind of job do you do?
Them: Oh, I work at …. [unintelligible]
Me: Say again?
Them: [unintelligible] administrations at [unintelligible] in Dallas.
Me: Oooh. Administration? That sounds interesting.
Them: Yeah, we do a lot of paperwork and [unintelligible].

Not really a whole lot to work with, so the conversation peters out. And that happens everywhere: church, work, parties, social events. Building relationships is the whole point of networking, and how do you fluidly do that with persistent communication breakdowns?

The social model also explains why deaf people so often flourish in a variety of roles within deaf/disability/diversity-related occupations. Those occupations are designed to facilitate deaf-friendly communication, which in turn enables deaf people to build personal connections with coworkers, supervisors, and educators.

We’re not disabled, for the most part, unless our environment makes it that way.

*This does not include the relatively few professions where safety unequivocally relies on verbal communication, like armed services, police field work, and firefighting. I do know deaf people who work in these professions, but they tend to be in volunteer or support roles, not in active duty.

**Sadly, I lost the link to the Australian deaf blogger, because I suck. If anybody knows who I’m talking about, please feel free to drop me a line so I can credit him. It’s really an excellent article.

Choosing Your Cultural & Linguistic Identity

Cherokee blood runs strong in my dad’s side of the family. Both my grandparents spoke Cherokee, and my grandfather won awards for his work teaching the Cherokee language. My siblings and I are registered members of the Cherokee Nation, with tribal cards to prove our ancestry. Yes, we have literal, honest-to-God race cards, and I’m playing mine here.

The thing is, I don’t speak nor read a lick of Cherokee, although I’d love to change that this year. I was just not exposed to it growing up. Hence, it’s not my natural nor native language. My physical makeup—other than the neurons in my brain that drive language development—had nothing to do with that. My dad tried to expose us to Cherokee history and culture as much as he could during our annual visits to Oklahoma, and we picked up on some Cherokee mannerisms from his side of the family, but for the most part, I was raised in working/middle-class settings, with predominantly German/Irish/Polish Americans. I live in the South now, and people here can often tell that I’m from the North; that’s closer to my cultural norm. So I think I can safely say that Cherokee is not my “natural” culture. I could learn a lot more about Cherokee, and grow to identify with the culture, but it would still be a learning curve, about as much as if I moved to China and tried to immerse with the natives there.

In that same strain, I am biologically deaf. But I don’t consider myself predisposed to ASL or Deaf Culture, especially Deaf Culture from those more than 2-3 generations before me. My native language is English, and I’m much more familiar with hearing culture than I am with Deaf culture. And I’m not the only one. Due to cochlear implantation and mainstreaming, the d/hh community (including the Deaf subset) has seen much more diversity in the past 20 or so years.

Another thing to consider is that, had the Cherokee Nation required that every one of its members speak Cherokee and live in Cherokee communities, regardless of any other considerations like the living standards of these communities, our access to resources, our interactions with non-Cherokee, our personal preferences, etc… I am quite certain they would have met with strong resistance, especially from my dad’s family. Not because their members don’t value Cherokee language and culture, but because people generally don’t like being told what to do.

I’m grateful that I learned ASL and studied Deaf history and culture. It helped me solidify an integral part of my identity in my early 20s, a time when I think pretty much everyone struggles with that kind of thing. I’m also grateful that Dad took us to Cherokee museums and re-enactments, and had us read books on our ancestors, and told us stories about his childhood in rural Oklahoma. But the thing is, it was all a gift. It wasn’t forced on me, and I didn’t have to trade off one culture for another.

Times are changing, as they always have and always will. I think most of us would like the freedom to determine our own cultural identities, not according to someone else’s cultural ideal.

“Natural” Language for the Deaf?

Sometimes I see articles and social media posts that imply, or flat-out declare that American Sign Language is deaf children’s “natural” language. This isn’t the case for me, nor for the majority of cuers that I know.

Language isn’t innate, and it doesn’t develop in isolation. Your L1 language is whatever you were consistently exposed to during the critical period of language development. You can also grow up with more than one L1 language simultaneously– that’s not uncommon outside of the United States. In fact, multilingualism’s demonstrable benefits for cognitive function is a big reason why I strongly advocate for learning both Cued Speech and sign language.

That said, as much as I love ASL, it is not my natural language. English is. I grew up with Cued English, and although I used some Signed English, I did not start learning full-fledged ASL until I entered college. I’m not an outlier here; I know several d/hh people who prefer English over sign, or are more fluent in English than sign, or learned English well before they learned sign. In fact, I don’t see very many “pure” ASL users outside of the residential school communities (most likely due to mainstreaming). The majority of d/hh people I know tend to use a mixture of spoken/Signed English and ASL.

This isn’t meant to be a value judgement; it’s just how things turned out. We were exposed to English growing up, so that became our L1 language– not American Sign language.

Addendum to Changing Perspectives: A New World

Another cuer contacted me to share that her experiences with the Deaf community did not quite match up with what I’d shared in my last post, Changing Perspectives: A New World. I had written that “[the d/Deaf community at University of Wisconsin Milwaukee] wasn’t this cloistered community that I’d expected. People had no problem with the fact that I used a cochlear implant or Cued Speech (most were quite curious about Cued Speech, actually) and could just get by with a smattering of Signed English at first.”

Now, I should clarify that these experiences took place mostly within UWM. Outside of UWM, I got more varied responses, although still overwhelmingly accepting. I think it depended on several factors, which I’ll outline soon.

Truth be told, I will probably not post much about the positive interactions here, because although “everybody got along, got what they needed, and is happy” is generally the desired outcome, it isn’t really much of a post. The few negative parts are where we still need improvement, likely through education and awareness. All that said, I will always, always shoot for balanced, constructive discussion. We really don’t have anything to gain by making enemies out of each other.

For me, I think several factors helped at UWM:

1) Diversity. UWM has/had a quite diverse community of d/hh students. Many came from a mainstreamed background, but we had several students and teachers who attended or graduated from residential schools for the deaf. We also represented a wide range of communication styles, from pure ASL to Signed Exact English to Cued Speech, and many of us used hearing aids and cochlear implants too.

I think a big part of this is our (in my opinion) excellent accessibility services program; they were truly committed to meeting each student’s individual needs and preferences. ASL, Signed English, Cued Speech, captioning– whatever you requested, they made sure their staff were equipped to meet that demand.

The size may also have played a part in it; compared to schools like RIT, Gallaudet, and CSUN, we had a fairly small d/hh community, so it may have been a bit harder to form cliques.

2) Age. I do notice a generational gap, starting around 1990, between what I think of as the “old school deaf”– raised in residential schools, used ASL as their primary language, had bad experiences with the auditory-verbal approach– and younger deaf people, more of whom tend to be mainstreamed and/or implanted, and with much better educational approaches too. The latter tended to be much more open-minded and accepting.

3) Mutual Respect. Pretty much right away, I took up ASL– I got many compliments about how fast I’d improved– and started learning about Deaf Culture. I always tried to show respect and appreciation for others’ perspectives, even when we disagreed. I think that made it much easier for others to show me the same respect and appreciation in return.

Changing Perspectives: A New World

For as long as I can remember, I grew up with the impression that deafness was a disability, and that I was the one who had to change—to work harder than everyone else—in order to “integrate” into the mainstream hearing world. I had to take years of speech therapy, one to three times a week, and go to mainstreamed schools, and wear my implant all the time. I remember having my mom as a transliterator in church and at youth group events. For many years, I just didn’t think much of it.

I mean, it was all I’d known, and the biggest things I had to worry about in middle school were squabbling with the boys I found annoying– which, in retrospect, were all of them. When I turned 13, things started to shift. I kept telling myself I was just a loner and preferred to go my own way, and to some degree, that was true. Over time, though, the feeling of isolation just got worse and worse. It got a little better in high school thanks to Emily, who opened my world just by being this shining example of kindness and grace. More than anyone else, she showed me how to be a friend.

Even so, the friends I’d made in middle school started finding new circles in high school, and while we still hung out, I had no idea where or how to find new ones. More than that, I couldn’t deny my growing identity crisis. On one hand, I was becoming more painfully aware of how my deafness bled into everything, even with people I loved. There was always, always this gap, and I didn’t know how to close it. On the other hand, I didn’t want to be shunted into this “deaf box,” where everything I did and became was all about deafness.

Before I entered college, I was skeptical about Deaf Culture, especially since I was hardly the “ideal” Deaf person: I grew up with an emphasis on spoken and auditory communication, I have a cochlear implant, I used Cued Speech rather than American Sign Language, and I saw deafness as more of a nuisance than anything else.

And then I took ASL classes at UWM, and met many Deaf people, and gradually my perspective changed. It wasn’t this cloistered community that I’d expected. People had no problem with the fact that I used a cochlear implant or Cued Speech (most were quite curious about Cued Speech, actually) and could just get by with a smattering of Signed English at first. For the first time since I left the Montessori school in Mount Prospect, I was on equal footing. For once, deafness didn’t factor in communication at all. I didn’t have to work so hard at it, and if I didn’t join in on a conversation, it was of my own volition. I didn’t have to “default” to a passive listening role out of fear of embarrassing myself because I couldn’t follow the entire conversation. I understood everything—or close to it—and chose to not participate. And to be honest, I found the Deaf
Culture’s perspective of deafness– as a variation in the human condition rather than solely a medical deficiency– to be quite redeeming.

I still cue. I still talk. I still use my cochlear implant. I still use American Sign Language (or, really, a Signed English variant, but I try to get as close to pure ASL as I can). I have a pretty even mix of deaf and hearing friends with a wide range of communication styles, but that doesn’t matter; we find a way to make it work, and we learn things from each other. In the end, I decided that I’m Hannah, I’m me, and while deafness and all the issues contained therein are a part of me, they don’t have to be all there is to me. Life’s too short to think about deaf or hearing, ASL or English. There’s a whole world out there, and I wanted to go see it.

Beginnings, Part I

I was born hearing with Hirschsprung’s, a disease that makes you stop pooping. In slightly more scientific terms, part of your intestine stops working. This means your body can’t eliminate waste, so it just builds up. Without treatment, it can be fatal.

So I was in and out of the hospital for the next two years, and underwent five surgeries. On the last one, at eighteen months old, I got an infection. I became profoundly deaf from the antibiotics they gave me to treat it. My mom thinks it was the kind of thing you can’t know about until it goes wrong. Twenty-some years later, I took a college class on genetics, did some research (read: very intense googling), and now I figure I carry a genetic defect that made me more susceptible to ototoxic medication. This is the long, boring explanation that I wrote in my final paper:

The most common of these mutations is the A1555G variant on the MTRNR1 gene, accounting for 1% of hearing loss in Caucasians and higher percentages in other ethnic groups. The A1555G mutation substitutes an adenine base for a guanine base, interrupting mitochondrial protein synthesis and impeding OXPHOS production. Though A1555G does not always directly cause hearing loss, it does make affected individuals more susceptible to the ototoxic effects of aminoglycoside, which is used in several medications. Kokotas et al. speculate that the A1555G mutation changes the 12S rRNA gene so that it resembles the 16S rRNA gene, which is a target of aminoglycoside action; this may explain aminoglycoside’s pronounced effects on the A1555G mutation (384, 387, 388; Guan 1792).

Anyway. The diagnosis. My parents were stunned. My grandma wanted to sue the doctor and the hospital; my mom didn’t see the point in it: “Money won’t bring back her hearing.” Now me, I’m glad we didn’t sue. The doctor who treated me died of cancer a year later and left behind a wife and two children. Had he lived, I think I’d have liked to go visit him, and tell him I was never angry at him. I didn’t forgive him, because there was nothing to forgive.

The truth is, I can’t miss what I never really had. I grew up deaf. It’s what I know, and it helped shape who I am, and how I see the world. At the same time, it doesn’t define me. I’m me, and that’s all there is to it.

At the time, my parents couldn’t have known that. They knew nothing about sign language, Deaf culture, auditory-verbal therapy… my mom’s only experience with deafness was a deaf girl in college that she barely understood (then again, my mom is terrible with accents). Their introduction to Cued Speech would come a few years later. In the meantime, they had a newly deaf baby, and no idea what to do with her.