The Horror of Cochlear Implants, Part 2

While I was visiting family in Wisconsin last winter, I went to a Deaf gathering at a local pub to reconnect with an old Deaf professor. I wound up at a side table with 5-6 older d/hh people near the entrance. At some point, a family walked in with a young teenage girl who had a cochlear implant. And the table fell silent. I mean, emphasis on “fell”: signing hands went down, and eyes went to her head. One woman signed, “She has a cochlear implant.” Another woman put up her hands and looked to the side: “no comment.”

Traditionally, the Deaf community– at least the older generations, in my experience– has been pretty staunchly anti-cochlear implants. In the past 20-30 years, that overall view has softened to this: Cochlear implants are OK for adults who choose to get it, but don’t implant children before they’re old enough to decide for themselves– and certainly never implant infants. What about the health risks? What if the kid grows up to resent it? I’ve seen some Deaf publications go so far as to call it cultural genocide.

I won’t go into the risks, which are vanishingly minor, by the way– we’re talking a fraction of 1% rate of complications, period; not deaths, all complications. What I will discuss is the preconception that implanting a child before s/he’s old enough to consent (whatever age that is) will incur resentment against her parents and an identity crisis.

Sample size of one, but: I was implanted when I was ten. I was certainly old enough to ask if I wanted it, but for whatever reason, my parents never did. That wasn’t really the way things worked in our household; what Mom and Dad said was Law, and we kids went along.

I have never once regretted the implant, nor resented them for not discussing it with me first. Hell, ten-year-old me thought having a metal bit that mysteriously stuck on my head like magic was pretty cool. (I’m not sure how much I understood about magnets back then.)

The thing is, I knew my parents loved me and wanted the best for me. And I knew the implant was a result of that. I think that’s what made the difference, not some vague and ill-defined idea of consent. It’s a tiny bit of metal. It doesn’t change anything about who I am. How could it?

I have never, not once, heard another cochlear implantee speak negatively about her implant. I’m sure they’re out there, but I haven’t heard it yet– and believe me, I’ve asked. The worst feedback I’ve heard on cochlear implants has been neutral: “Oh yeah, I just don’t use it anymore.” Most has been positive. The criticism and concerns I hear almost always come from an unimplanted person. And damn near every one of them has a friend, or a friend of a friend, who got a cochlear implant and hated it. (After a while, I began to suspect that their “friends” were one person that everyone knew.)

More than that, though, I’d read accounts of cochlear implantees being rejected or teased by their d/hh peers as soon as they got the implant. And that was touted as an example of how implantation could cause an identity crisis, a reason to not implant your children.

Um, excuse me? If your friends ditch you over something like that, the cochlear implant isn’t the problem, and you need better friends.

The Horror of Cochlear Implants, Part 1

Bring up the subject of cochlear implants in a substantial Deaf group, and I guarantee you someone will cite a laundry list of things that you (supposedly) can’t do with implants. These include, but are not limited to:

  • swimming
  • showering
  • sky-diving
  • snorkeling
  • sportsing

Funny that. I’ve had a cochlear implant since I was ten, and I’ve done all of these things, most of them on a regular basis. Hell, I’ve studied various martial arts (read: gotten my ass kicked by old men) for over a decade now, and a good chunk of that entailed full-contact sparring.

Now, to be fair, I cannot do most of these with the external processor on, because water/high-impact pressure + expensive electronic equipment = bad. My internal cochlear implant bits, however, will be fine, barring a freak accident.

Here is what I cannot do, per my cochlear implant manufacturer’s recommendations– and bear in mind the internal parts for my particular implant are over fifteen years old by now, so modern models will most likely not have the same issues:

  • Scuba dive deeper than 30 feet.
  • MRIs. If I need an MRI done, I’d have to have the implant surgically removed first, get the MRI, then be re-implanted.
  • Play with static electricity. What this means is that McDonald’s ball pits are out for me unless I take off my external processor. (This is mostly because a static electricity shock directly to the processor carries a risk of wiping out my implant’s mapping, so I would have to go back to the audiologist to get it reprogrammed. Inconvenient, but entirely fixable.)
  • Play with any kind of electricity, like that one hand dryer in the bathroom that buzzes when you touch it. Touching it probably won’t break my implant, but it will earn me a very stern lecture from my mother and my audiologist.
  • Play with Van de Graaff generators.  This is my greatest post-implant sorrow.
vandegraafhair

Thanks to Advanced Bionics, I can never attain David Bowie hair without copious gel. Monsters.

Many of these misconceptions come from seriously outdated information. From what I recall from researching this in college, apparently the earliest cochlear implants did entail an open hole in the skull, which naturally restricted several activities like swimming and showering. That said, this hasn’t been applicable past the 1980s, if not earlier. I assure you I do not have a hole in my head.

Even if a cochlear implant barred me from activities like skydiving or snorkeling, I’d still consider the trade-off pretty damn good for increased access to an auditory world. The thing is, I see sound as additive, not subtractive. It’s like this: on a daily basis, I can better communicate with hearing people and mitigate the need for accommodations– not 100%, but it definitely helps fill in the gaps when lipreading. I can also enjoy music more fully; hear warning sounds; and experience those funny little sounds that hearing aids alone couldn’t pick up, like my cat purring, or trees creaking, or waves crashing.

None of that takes away my ability to use sign language or participate in Deaf culture. And yes, plenty of d/hh people get through life just fine without these things. Chances are I would be fine, too. But I still wouldn’t forgo all of that just so I could cross “deep-sea scuba diving” off my bucket list.

Giving Tuesday

A special (if late and off-schedule) blog post, what with it being #GivingTuesday and all.

Naturally, being a Cued Speech blog, here’s the Croaking Dalek’s pet cause, with a brand spankin’ new NCSA video to boot (although really any other day is fantastic for giving too).

Here’s what I’m throwing my hard-earned cash at: the Deaf Children’s Literacy Project, run by the National Cued Speech Association. And here are your reasons to donate:

1) Help deaf kids learn how 2 read gud
2) I’m in this video, middle of the bottom half at 1:42
2.5) Would you believe I selfied that snazzy photo in my bathroom mirror last-minute? You would? Well, pony up anyway.
3) It’s Christmas. Santa[*] loves you. Don’t make Santa sad.

[*]Substitute for Jesus, Krampus, Mithras, or whichever religious deity floats yer boat.

Y’all can donate riiiiight here: https://www.givedirect.org/give/givefrm.asp?cid=566

We Aren’t Outliers

“You had strong family support.”

“You went to a good school.”

“You got lots of one-on-one time, didn’t you?”

“You were exposed to other cuers.”

Sometimes, when I tell others about what Cued Speech had done for me growing up, someone will mention the above, as if those factors somehow negate or diminish Cued Speech’s efficacy. It’s like they’re implying that Cued Speech itself didn’t work, that the other factors had to compensate, or that I was the exception that proved the rule.

It’s true that family and educational support are immensely important, and often if not usually a deciding factor in a child’s success. Home and school are where the child spends most of his time. However, communication access and literacy depend highly on what the people in those environments are equipped to provide.

In a residential school, or a mainstreamed program with a strong Deaf presence, everyone is either d/hh, more visual-oriented, or have (ideally!) received training and support to meet language requirements. Staff are able to act as appropriate language models, so that ensures communication access and, to some degree, academic success.

Outside of residential schools, though, getting that access to appropriate language models can be much more challenging– not to mention the complexities of using a manual language to impart literacy in a completely separate aural language. That’s if you have access to ASL; more often, what I’ve seen is a mixture of auditory-verbal therapy and manually-coded sign systems, and the results can vary just as much from very, very good to very, very bad. In fact, many cueing parents took up Cued Speech precisely because their local programs or residential schools were not a viable option for one reason or another.

In evaluating different approaches in d/hh education, we need to look at that approach’s overall results, not just specific examples. We can’t cherry-pick outliers to prove our point. That’s probably why those statements at the beginning somewhat annoy me, because in my experience, success at attaining language and literacy through Cued Speech is the norm, not the exception.

In my experience, signing d/hh people who can write or read well tend to be in the minority. On the flip side, cueing d/hh people who have those odd grammatical or spelling flukes– not typos, but more like what you might see from ESL speakers– are the exception; the rest read, write, and talk like native hearing speakers (with varying degrees of a “deaf” voice). I’ve had more than one person tell me that they wouldn’t know I was deaf just by reading my posts.

The studies on Cued Speech that I’ve read bear this out– in fact, I haven’t yet found any studies with negative results on Cued Speech’s use. (I do recall one with “meh” results in a group of hard-of-hearing students, but that’s about it.)

I suspect that you won’t see such consistent results among deaf signers mainly due to these reasons:

  1. The learning curve involved in picking up any manually-coded or signed system, which demands greater commitment and effort from parents and teachers over the long term, so you’re much more likely to see a wider variation in usage and proficiency.
  2. The linguistic and conceptual gap between sign language and spoken language (or even just two different languages). You can patch that gap somewhat, but it’ll never replace incidental learning through full linguistic immersion (and not necessarily just reading and writing).

This isn’t to make Cued Speech out to be a magic bullet that bestows language and literacy the instant someone starts using it for their kid. What it does do is enable one to visually “recode” a language she already knows, without the delay of learning and translating through a second language. In this way, the d/hh kid is put on the same playing field as a hearing child for literacy and language acquisition, so d/hh cuers are much more likely to pick up spoken/written language at the same pace as their hearing counterparts.

Signing Impaired: the Double Standard

I’ve posted about the use of “hearing impaired” and how it doesn’t bother me, though I do take care not to use it because many of my d/hh friends find it offensive. In the Deaf community, though, I’ve occasionally come across attempts to turn the tables by using the term “signing impaired” to refer to hearing people.

Perhaps ironically, even though “hearing impaired” doesn’t bother me, “signing impaired” has never felt right to me. Sometimes it’s used in the d/hh community as a joke, sometimes as a pejorative. Either way, it’s never made much sense to me. Here’s why:

  1. It comes off as hypocritical. You don’t like it when people use the term hearing impaired, so in turn, you use “signing impaired” to… I don’t know, teach them a lesson? What lesson, exactly?
  2. The way most people use the term “hearing impaired,” they’re just referring to your level of hearing. Despite its overt focus on hearing, it’s not intended to diminish you as a person. “Signing impaired,” though, definitely carries an insulting connotation– in my experience, it is usually intended as such. See #1 for my confusion on what it’s supposed to accomplish, exactly.
  3. It doesn’t mean anything. Ears are designed to hear. That’s what they’re for. If they don’t hear, then they are nothing more than funny-looking flaps of skin on your head. That’s what “hearing impaired” refers to. Hands… well, your hands work fine whether you use sign language or not. “Signing impaired” is more about language proficiency, not physical ability; and that makes about as much sense as calling a Chinese native “English impaired.”

In the grand scheme of things, it’s pretty minor. On the other hand, words have power, and the little things add up into big things  . If we, as a community, want courtesy and respect from others, we need to model it in turn.

Discrimination in the D/HH community

I was asked if I perceived there to be discrimination between various groups of those with hearing loss. More specifically, did I see a difference in attitude between those who have hearing loss through either work or life experiences compared with those that are born deaf or hard of hearing?

My answer was yes, although the discrimination I saw and heard of didn’t necessarily fall along those lines. They had more to do with communication modality (if someone cued or spoke vs. using ASL), and additional disabilities like blindness or cognitive impairment.

For all the isolation and loneliness that so many d/hh people experienced growing up, you would think they’d be more inclusive than the mainstream hearing world. Turns out, they’re human just like the rest of us.

I can still remember the pain in her voice as Candace Lindow-Davies told us, through tears, about how badly her deaf-plus son wanted to fit in, to have friends at his residential school. “Deaf kids can be very cruel,” she said, and I nodded with complete understanding. Kids in general can be cruel, but combined with that characteristic Deaf bluntness… whether it’s cultural or neurological, we really don’t sugarcoat anything.

Moreover, I did some volunteer work with deaf-blind people in college, and I’ve heard some pretty sad stories of deaf-blind people being treated like lepers as soon as they started losing their vision– almost like the other d/hh people were afraid of “catching” the same thing.

Regarding communication modality, I’ve known of d/hh friends getting criticized for being “too English” when signing. While I haven’t really experienced anything worse than pointed disinterest in Cued Speech, I do know of cuers at Gallaudet and RIT who did not publicly share that fact about themselves because of the possible societal backlash. Nowadays, I think Gallaudet is more open-minded, but back in the 80’s and 90’s, especially during the Deaf President Now! movements, it probably wasn’t the best idea to advertise that you knew and used Cued Speech.

RIT, unfortunately, was not quite as progressive as Gallaudet; from what I gather, it is/was very much an ASL-only campus. It was not too long ago that a fellow cuer, Rachel, struggled with getting even captioning access to her classes. The way RIT had set it up was that, if you wanted captioning, you had to pick the one class section that offered it: all the others would provide only sign language interpretation. And forget about Cued Speech transliteration– in 2003, Nicole Dugan had to file a formal complaint against RIT after they failed to provide her with CLT services for two years. (In fact, Dugan had avoided becoming fluent in ASL for two years so that RIT would not be able to use that as a reason to continue using sign language interpreters instead– which I find absolutely shameful on RIT’s part.)

The long and short of it is that, yes, sadly discrimination within the d/hh community does happen. Quite often from those who most strongly claim to advocate for inclusion.

Hearing Impaired = Broken?

Last week, I bought a giant canvas. It did not fit in my car. I spent the next hour or so texting local friends trying to find someone with a jeep or a truck, contemplating the logistics of strapping it to the top of my car, and snarking about it on Facebook.

Batman would not have made this mistake.

behold. my l33t planning skillz.

What on earth does any of this have to do with “hearing impaired”?

Well, I ended up asking the store to hold the canvas until I could get someone with a bigger car. I came back the next day after work to ask the staff if there was a way we could take the canvas apart so it could fit. When we walked to the front of the store, where the canvas was sitting behind the counter, I spotted a note taped to it that read:

CUSTOMER WILL COME BACK LATER
HEARING/SPEECH IMPAIRED

My first thought: “Yay! They left a note so they know I’m the one who bought it!” I didn’t think to say anything until after a very nice and accommodating store representative helped me try to fit the Giant Canvas into my car. When both of us gave up and agreed that I needed a bigger car, I walked back inside, motioned for a pen and paper, and wrote:

“I saw that the note on the canvas [now gone] said ‘hearing impaired.’ I just wanted to warn your staff that many d/hh people find that term very offensive. I don’t personally care, but some people do, a lot.”

The very nice and accommodating store representative apologized– from her gestures, I could tell she knew a little sign and was familiar with Deaf culture– and explained that she had taken down the note for that very reason before we’d carried the canvas out to my car. I reassured her that it didn’t matter to me; I just didn’t want them to have a bad run-in with other d/hh people because of an innocent slip.


The term “hearing impaired” has never bothered me. I used it growing up because I saw it as an useful umbrella term that encompassed all varying degrees of hearing loss. It wasn’t until I took ASL classes in college that I learned its secondary implication for many d/hh people: the idea that we’re broken and/or need to be fixed.

I don’t quite agree with that definition of “impaired,” by the way; I interpret “impaired” as more like “lacking.” You just don’t have a particular thing– or you don’t have as much of it as others do– that doesn’t have to mean it’s broken, or that you are broken. There’s no value judgment in it for me.

I do understand why other d/hh people interpret it that way, though. And I understand the larger picture it can reinforce. What I don’t understand is the level of ire it seems to generate sometimes, particularly when the hearing person who uses that term has no reason to know that it’s offensive to some d/hh people, or why it would be offensive. The thing is, unless you’ve spent some time around the d/hh community (and even then, a somewhat specific segment of that community), you won’t know. And to add to that, to the uninitiated, often “hearing impaired” does sound like the more polite, PC term to use.

Basically, 99% of the time, when someone uses that term, it’s not meant to be hurtful or offensive. It’s generally other d/hh people who use it as a pejorative (“signing impaired,” anyone?), and who object to its use.

I’m not saying that we shouldn’t ask people not to refer to us as “hearing impaired,” or educate them about its implications. Words have power. We would do well to be aware of that, and to respect it. At the same time, should it be taken as an insult if the intent isn’t there, if you have to contrive meaning out of it to turn it into an insult? And how far do we want to go into policing the terms that others can use, especially if other d/hh people use “hearing impaired” to identify themselves?

How to Write about the Deaf and Hard of Hearing

For three years I worked at www.DeafandHoH.com as an editor and writer (Hi Senthil!). Naturally, this entailed a lot of reading about the d/hh community– most of it from hearing writers who had no experience whatsoever with that world. Not an issue per se, but I often ended up having to correct a few assumptions.

There is a right way and a wrong way to write about people with hearing loss. The finer details vary by person– and the best way to find out is to ask– but essentially, the single most important bit to remember is this:

Focus on the person, not the hearing loss.

As a general rule, the only time a person’s hearing loss really needs to be mentioned is in the introductory paragraph, or when it’s directly pertinent—like communicating with hearing peers, or getting accommodations. And, for the most part, hearing loss doesn’t really affect anyone’s ability to do anything except hear, and in some cases communicate, if we’re talking a primarily verbal environment. Take this, for example:

“Despite his hearing loss, he is an accomplished artist.”

OK, look, I’m deaf. I draw and paint. And my first reaction is, he’s deaf, not blind. (Even then, I’m pretty sure there are fantastic blind artists out there who have figured out how to make it work.)

I see this a lot with sports, by the way. You could have this 300-lb. behemoth who can strategically weave through a mob of linebackers with ballerina-level grace and finesse, and some journalist out there would still natter on about the obstacles he faced– of course, referring to his hearing loss.

To be fair, hearing loss is not exactly a picnic, because we do live in a predominantly hearing and auditory world. We will need to find workarounds, and that’s worth mentioning. But that’s just it: they are workarounds, not this insurmountable Wall to be conquered every time we have to do anything. Hell, sometimes it’s even an advantage: I draw and paint because I am an incredibly visual person, and my deafness had a lot to do with that.

For most deaf and hard of hearing people, it is just part of learning to adapt, and many of us aren’t comfortable with being put on a pedestal for living out their daily life, or serving as a stand-in to “inspire” someone. Stella Young has an excellent TED talk on the objectification of inspiration, which is worth a watch: http://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much/transcript?language=en.

Incidentally, this can be a difficult line to walk, even for me. When in doubt, ask someone who’s d/hh. Preferably, ask several. A good place to start, though, is to avoid the following terms, and any like them:

  • Barrier
  • Obstacle
  • Challenge
  • Inspiration
  • Overcome
  • Disability

So. That’s the big one to watch out for. Couple other writing no-no’s I’d include are:

Overt/excessive references to sound. Especially puns. “Sound and Fury,” “Hearing with Her Eyes,” and “World of Silence” are the ones I can think of off the top of my head. Truthfully, I tend to see these as low-hanging fruit at best, and lazy writing at worst.

…Maybe just leave them out altogether. The thing is, we’re deaf. For most of us, sound is just not a huge part of our daily lives. I mean, I don’t even notice the absence of sound most times. I don’t have the feeling that it “should” be there (except when I’m wearing my implant, then I’ll start making random tapping noises just to make sure the battery’s working). Even a lot of late-deafened adults find that they just don’t miss it all that much.

Don’t use the term hearing impaired. This is more of a gentle heads-up than anything else since it is not common knowledge. Although I don’t personally care about “hearing impaired,” a lot of people find it distasteful and even deeply offensive because to them, it implies “brokenness,” or that the person needs to be “fixed.” Unless the person you’re writing about uses that terminology or is OK with it, best to leave that term out of your journalistic vocabulary altogether. “Deaf and hard of hearing,” although admittedly a mouthful, is usually a better substitute.

This feels like a woefully short primer, but the crux of it is, we’re people. Hearing loss/deafness is just one part of our lives. Write about us as people, and you probably won’t veer too far off course. Honestly, that holds true for any group no matter the demographic.

Interpreters as Advocates?

On and off, I’ve read discussions about the interpreter’s role as an advocate or ally for their deaf and hard of hearing clients. Sometimes the discussion veers into a direction that leaves me a bit cold, because then I remember the story that Tony Wright told me last year:

One deaf cuer, as a child, had a transliterator who was originally a sign language interpreter. She’d taken up Cued Speech in order to transliterate for him. However, at some point, she switched from Cued Speech transliteration to sign language interpreting in classes because she thought Cued Speech wasn’t working for him. She did this without his parents’ knowledge or consent, and in breach of his IEP. For those of you who aren’t familiar with the interpreting world, that is a massive, massive breach of ethics. The interpreter does not get to make that call; the client does (or in the case of minors, their legal guardians do).

At the time, the student accepted it without complaint, not really being aware of interpreter ethics–children typically aren’t. But years later, when he looked back on his experience, he realized just how out of line it was.

The thing is, the interpreter/transliterator is ultimately an intermediary, a go-between. Her primary job is to relay information, not advocate for or protect her clients. While there are definitely some situations that I think would reasonably warrant the interpreter to step out of that strictly-defined role (for example, a medical discussion that could be life-altering), in general, I’m leery of adding advocacy to an interpreter’s role. This is especially true with minors since generally their parents and educators are the ones who call the shots, not necessarily the minor child himself.

Too many questions come to mind, and my most pressing one is: is the would-be “advocacy” what the client really needs, or what the interpreter thinks the client needs?