Deaf Culture

Wildbow, the author of the terrific web serial Worm, writes about Deaf culture on Reddit:

 

Comment 1:

Am hard of hearing, have dealt with the Deaf (capital D) community, due to involvement with the local children’s hospital and my own background. Further, I grew up in Ontario, which is a world leader in terms of equipping the deaf to listen and speak (and in implantation), had one of the best in the field of auditory-verbal therapy to teach me, and I grew up in the 90s, which the OP talks about.

I have a severe to profound loss in one ear and profound in the other (8.5 out of 10 on the “can’t hear shit” scale for my left ear, and a 10/10 ‘I can hear better out of my knee’ in my right). I grew up with hearing aids and now regularly wear a hearing aid and a cochlear implant I got when I was 26. I went to a regular school and I did struggle a bit, but it’s hard to say how much of that was my hearing loss.

The main thing to understand is that language and culture are inexorably interlinked. As a culture or community grows, language will grow with it, and with the loss of a language, cultures can falter and die. This is part of the reason why dictators and warlords will try to extinguish the native languages of a people they’ve invaded or conquered.

Now, the Deaf community is a somewhat isolated community, a small group of people who don’t easily communicate with the greater world around them. They go to schools with other Deaf, they date and socialize with other Deaf, and often work in the same sorts of environments as other Deaf. They have a close-knit community with its own forms of expression, art, and communication, and that other community, the greater community that speaks another language, it’s often hard or frustrating to deal with.

But the sense of ‘us vs. them’ isolation goes a bit further, and this plays into the OP; there was a time when the Deaf were abused, treated as mentally deficient, and sterilized against their will. There are places in North America where this was done regularly and done as recently as the 1970s. The Cochlear Implant started to be applied at some point in the 1980s.

So you have a subculture that bands very closely together, with (sometimes) really fucking bad experiences with the outside world, especially the medical community, they’ve found a balance and a measure of security, and then the medical community starts making a push to ‘fix’ them. Misinformation and fears fly, and there’s talk about how this fix can involve meningitis, can kill you, how it doesn’t really work, and more. Meanwhile, there’s a default “Why wouldn’t you want to fix this?” assumption on the part of the hearing and the medical professionals start giving these dangerous cochlear implants to babies.

Imagine you’re part of an English speaking community of 2400 smack dab in the middle of China. You and your friends don’t speak Chinese, though you sometimes try, and don’t even pretend that the Chinese would bother to learn your language. Your teachers and some of your older friends bear scars, mental and physical, from horrific treatment a mere decade ago. Then they start taking your babies, and giving them comprehensive surgery to make them Chinese.

Or, perhaps, it might make sense to think of a hypothetical where you’re gay, and yes, gay people have been horrifically abused and mistreated as a group in the scarily recent past (and to a lesser degree, still struggle today, much like the Deaf). Brain surgery gets developed that will make the gay straight, and they start testing for homosexuality and giving the surgery to children by default. Your friends, people you care about, leave your circle and your community to go get the surgery and join the rest of the world. Can you imagine the outrage? The feeling of betrayal? On the backs of hostility like what fed into the Stonewall Riots?

This is your community. They’re not just messing with you, steadily dismantling the culture and art and networks you and yours have built. They’re going after the children. They’re pushing to wipe out your community as if there’s something wrong with you and your friends and your partner and your teachers, and normalizing something that is going to impact every single Deaf person (or English speaking person in China, or gay person) further down the road.

This is, based on what I’m aware of and what I’ve read, the best take I can give on the mentality during that time.

So yeah, there was a backlash. The situation is complicated, and today, things are generally a lot better… I know that at the children’s hospital near me, they’re super, super strict about how they go about assessing options and equipping the parents with the knowledge and power when it comes to deciding whether or not to give devices & AVT or have the child join the signing world. But at the end of the day, it’s still messy. I could tell you guys a dozen stories of how and where the process gets messed up, by the hospitals, by the parents, by the kid, the Deaf community, and by bystanders. Both ways.

And to complicate things further, as we age, our ability to learn language (and to learn to hear and speak) sets, so the later you implant or give hearing aids to the child, the less effective those things will be, and the longer the adjustment period and learning process will be. The decision has to be made early to be a good decision, but this is well before the child is equipped to make that decision.

To say the issue was limited to the 80s and 90s as the OP does is misleading. Yes, I definitely remember stories from then. In sixth grade I was part of a magazine article, and was super excited to show my classmates, but what my teacher found interesting was the part of the article about a little girl (8?) who’d had a brick with threats attached thrown through her family’s living room window. Why? The child’s family was moving forward with her cochlear implant. I had met her, and I had met the person who ended up being the culprit. That was the mid 90s.

But more recently? In the 2000s, I was working in a grocery store when a Deaf man handed me a card saying ‘I’m deaf, here’s how you can communicate with me’ with some basic signs on it. I signed to him in some crude ASL (I learned in 5th grade for a choir thing, I know about 100 signs and sign like a two or three year old talks) that I knew some already. He took a second look at me, saw my hearing aid, screwed up his face in disgust and spat on me, before leaving his basket and striding out of the store.

In 2010 or so, I was backpacking and catching a bus when a woman tapped my shoulder, pointing at my hearing aid before signing so fast I couldn’t hope to follow. I signed for her to slow down, and said something to a similar effect, and she looked shocked, then upset, then turned her back to me, arms folded, which is a pretty damn rude gesture among the signing. My best take on that was that I wasn’t Deaf enough.

Hard feelings are still there. I understand them, I don’t always agree with them, but that’s my take on the situation.

 

Comment 2:

Quoting an old post of mine, with some edits…

Here’s the thing – being deaf, or having any disability, it’s very easy for your impairment to become your status quo.

Speaking for myself, I’m deaf but not Deaf. Note the little d vs. the capital D.

I’m severe to profoundly deaf, I wear a hearing aid and cochlear implant, I was raised to speak, and I didn’t sign until I was 12, for a thing I did with the school choir (I barely know 100 signs now). But even for me, growing up, there were countless things that I did/thought/felt that I considered normal when it was my impairment at work. Being tired after school, struggling with school, struggling with social interactions, I chalked most of it up to me rather than my disability. An example is that for years, as a young adult, I’d go to the doctor and wonder/hope that he’d find something wrong with me, a way to explain why I felt so tired all the time – mono, a maybe a hormonal imbalance. It never really occurred to me that the reason for my fatigue was that my brain was working doubletime to fill in the blanks and process everything that my ears weren’t getting. Finally making this connection in my mid-twenties was a major factor in my getting an implant.

Language is heavily tied to culture, and the Deaf community possesses a definite culture. They’ve been through a lot, have had to fight for rights, and even went through periods where they were forcibly sterilized and abused. The Deaf perspective often involves growing up with Deaf friends, attending a Deaf school (sometimes living there), dating Deaf people, and often working in jobs with other Deaf people. They know and are (rightly) proud of every advantage that signing offers them – that you can sign with your mouth full, that you can sign in a noisy area, hold a conversation underwater, and the vast and deceptive scope of nuance you can assign a single word with the speed and exaggeration of a given sign and how you join it to others. For them, there’s no bad to it because they’ve adapted to a life where they’ve found ways around all the drawbacks. They never cross paths with the stuff they’re missing, and either personal bias or that status quo perspective I just mentioned leads them to believe the drawbacks aren’t that bad or they’re nonexistent (ie. “I can listen to music and dance if I put my hand on the speaker and feel the bass”).

And here’s the thing – that gets contrasted with an outside hearing world that’s vaguely hostile. Those ‘hearies’ look at you funny when you sign, some even act like you’re creepy or weird. They’re muted, not in sound, but in expression – even if you could hear it, they don’t express a tenth of the emotion when they speak. Look at a Deaf person’s facial expression as they sign; the exaggeration you see is the opposite of how they see us. Objectively, the Deaf culture is really vibrant and expressive.

For the Deaf, communication with that outside world will never be perfect. Interactions with others, 90% of the time, involves some degree of frustration, restrained tolerance and miscommunications from each side. Lipreading only allows one to identify 40% of sounds, forcing you to fill in the blanks. Getting non-signing people to sign is a chore, and new learners rarely rise above the speech level of a caveman or three year old. Many Deaf have low levels of literacy (because their language is so different from the written word) so even writing things down doesn’t always work, especially when the things that demand the most detail are the things that are hardest/more time consuming to write down.

(I mean, hell, I don’t sign 99.9% of the time, I speak, and I still experience these issues in communication.)

Feelings for the hearing world range from noncommital disinterest to dislike, even if only because of the way the little hassles and inconveniences add up. Many Deaf find their experiences with the hearing world are more unpleasant than not, and the interactions and sympathies they have with other Deaf will often reinforce/build on that. Meanwhile, the Deaf in-group forms a culture with its own norms, dialect, conventions and preferences. Families are established within this community and culture.

As a Deaf person, you get attacked by this hearing world that already treats you with some degree of contempt. Where a Jewish or French or Chinese community in the midst of your city will perpetuate itself, the Deaf culture is dying. Audiologists aggressively market C.I.s (Cochlear implants) as a ‘fix’ to the hearing parents of deaf children (this is how the Deaf often see it, but I find the approach very much depends on the area – I know my area is very good about offering multiple options to the parents of Deaf children) and hearing parents will often jump at the chance to give their child 90-95% hearing instead of 10, 5 or 0%. Heck, with the advances in science, Rubella (one of the seven primary causes of deafness in newborns) is being vaccinated and has almost ceased to be a factor. The implication is always that what the Deaf culture has to offer just isn’t good enough, that it’s inferior.

So the culture dwindles, the people who’ve never quite connected with the Deaf community might leave to get implants and try to fit in (or partially fit in) with the hearing world, and the group dwindles further. As a Deaf person, you know there’s so much that’s amazing, or special, or touching, that you’ve experienced growing up in this world, stuff that would never translate. There’s art your community has produced that’s as valid and special in its own right as anything from any other language, there’s a history, and a shared struggle… yet, if your community dies, all of that will be lost and forgotten.

All of this colors the perception of Cochlear Implants. Misinformation gets spread, some Deaf don’t see why you’d want to go through the process, and in some cases, it leads to outright hostility.

I remember I was in sixth grade when I heard about an incident where a little girl had a brick with a note tied to it thrown through her window, threatening her. Her family received death threats. Why? Because her mom was considering getting her a CI. I knew the girl and I’d met/interacted with the guy who was believed to be one of the culprits. As a person that uses hearing-assistance devices, I’ve been spat on and shunned (two separate incidents) when I’ve crossed paths with the Deaf.

But put yourself in their shoes, and look at the decisions they face: you’re Deaf, you sign, you’ve spent much of your social time with other Deaf people. Your experiences with 95% of hearing people are unpleasant to some degree, and so very few of them go out of their way to learn your language to any competent degree. You have a hearing baby, and you know they’re going to be a part of that outside world you can never fully interact with. Isn’t it disappointing? You’ll teach them to sign, naturally, but you know their friends, loved ones and coworkers will so often be a part of that other world.

Or you have a baby that is hard of hearing, and you wonder if you really want to get that implant, which you’ve been told involves brain surgery (not true – just surgery), takes years to learn to use (not necessarily true), is unpleasant/painful (varies from person to person, but typically not true/not for long) and even dangerous (mild increase of risk of meningitis). Or maybe you want to keep them Deaf, a part of your culture, where you feel like you can actually be a parent, because you know what they’ll be dealing with.

There’s a hell of a lot of emotion tied into the situation. A whole lot at stake, and there are no right or easy answers to those problems. Saying being deaf (or being Deaf) is a flaw is only a very small part (and simplistic view) of a very complicated set of issues. My own experiences with the Deaf have been pretty damn negative, as I note above, but this is how I’d interpret the Deaf view of the situation, and I can’t really fault them for feeling the way they do.

Also: An academic paper arguing against hypothetical bionic ears and giving the arguments for Deaf culture.

 

 

 

 

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