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