Hearing Loss: A Visual Comparison

Most people unfamiliar with hearing loss seem to visualize it as a continuum. Either you hear “more,” or you hear “less,” and all you need to do is turn up the sound.

Not quite. Hearing loss tends to be more patchy. For example, higher-frequency sounds are usually the first to go, particularly with age-related hearing loss. This usually means the person will miss out on sounds like and z; or they’ll confuse similar sounds like t, p, and k.

A visual representation of hearing loss would most likely look something like this:

Visual impairment vs hearing impairment
(Pardon the title; it came with the graphic.)

 So, that leads us to the question: what does hearing with hearing aids or cochlear implants look like?

Well, the fundamental difference between the two is this: hearing aids amplify the sound input your inner ear and brain can perceive; cochlear implants replace your natural sound input with an electronic substitute.

I wish I could take credit for the concept behind this next illustration, but I saw it on another hearing loss blog eons ago, back in the mists of the time when people still used AOL and MySpace (much to the chagrin of humanity). I’ve replicated it below:

color wheel comparison

What sounds might “look” like with hearing aids and cochlear implants.

This, incidentally, is why you’ve got to be severely to profoundly deaf in order to qualify for a cochlear implant; the implant destroys what little residual hearing you have, and the substitute will be a “pixelated” version of the real thing. Implantation becomes a better trade-off when you don’t have enough usable residual hearing to begin with.

Why are Cochlear Implants Bad? A Primer

On The Horror of Cochlear Implants, Part 2, a Facebook acquaintance commented, “There must be some culture that I’m entirely outside of. Being able to make use of a sense that you otherwise could not is a bad thing somehow? Looks like I need to rethink my glasses…”

The traditional Deaf aversion to cochlear implants is baffling to most people. They can’t imagine why anyone wouldn’t jump at the chance to hear. Thing is, I understand that viewpoint. I don’t agree with it, but I understand it. The short answer is that it’s got a lot to do with the values that Deaf culture traditionally holds, most of which was shaped by events in the 20th century. The long answer… well, let’s dig right into the beginning.

***

Deafness fundamentally shapes the way you approach the world. More so if you lost your hearing at a young age. In the absence of a sensory input, the brain and body will compensate in other ways. Not quite Daredevil-style, but deaf brains do tend to rewire for heightened visual and tactile input. There are also some real interesting questions on how our brains process language. And apparently we have better peripheral vision too, by having more neurons in our eyeballs. In other words, I guess we’re… glorified chameleons?

funny-chameleon-1254493-640x480

Kinda like this, but sexier.

That kind of thing also leaks out into how we think, talk, and behave. Instead of “I heard him say…” I’ll say, “I saw that he said…” We hug and touch more. We’re blunter, because communication is hard enough to begin with, and dancing around the topic just makes it worse. (That bluntness has gotten me into trouble more often than I care to admit, incidentally). We tend to use more animated gestures and expressions. Oh, and we gravitate to light.

Kinda like… no. Exactly like this.

When deaf and hard-of-hearing people get together– especially at residential schools for the deaf– and find these commonalities in how they live and think and get shit done, they basically create their own language and communities that don’t really factor in sound at all. Modern technology has made that even more possible: video calls, flashing alerts, text and video messaging, emails.

(Matter of fact, Nicaraguan sign language is a modern example of this phenomenon. Prior to the 1970s, Nicaragua didn’t have a deaf community, nor an unified sign language; d/hh kids grew up with mostly hearing families and home-grown signs. Then someone threw a bunch of those kids together, made it into a school, added more kids… and over time, the kids developed a pidgin/creolized mishmash of their home signs. Years after the school started, an ASL researcher found that the younger students had not only copied the older students’ creolized sign language, but also sophisticated it further. If you don’t mind the paywall, here’s a link to the study: http://www.ethnologue.com/language/ncs

However, some people disagreed on the benefits of this cultural and linguistic autonomy, at least in the US. And a lot of those people tried to steer their next generation of d/hh children toward integration into mainstream hearing society, particularly in the late 1800’s to mid-1900’s– often to poor results, both socially and academically. Turns out, educating and integrating d/hh children based on sound instead of sight is a tad counterintuitive, especially when effective hearing aids and cochlear implants aren’t a thing yet. (And I haven’t touched on the numerous attempts to “cure” hearing loss, a lot of which did more harm than help.)

The rise of oralism in the early 20th century–using spoken language to teach d/hh students– created a domino effect. Residential schools for the deaf were downsized or closed; d/hh staff lost their jobs to hearing people who couldn’t sign; d/hh students were banned from using sign language– some punished by having their knuckles rapped bloody with a ruler, or slammed into drawers; the focus on speech rehabilitation overshadowed traditional studies like math, science, and the trades– and often at the cost of language development. The end result was social, educational, and ultimately career retardation for a large segment of the signing d/hh people nationwide. (Pro tip: want to learn some really rude signs? Bring up Alexander Graham Bell with a mainstreamed Deaf person over 30.)

There are books and books of history on this, but for starters, I’d suggest A Place of Their Own: Creating the Deaf Community in America by John Vickery Van Cleve and Barry A. Crouch; and Never The Twain Shall Meet: The Communications Debate by  Richard Winefield.

Keep in mind, much of this was done in the name of “normalizing” d/hh children. Tell generations of signing d/hh people that they’re broken, threaten their nexus of social interaction and networking (i.e. residential schools), punish them for using an intuitive language, stunt their social and academic development by hyper-focusing on the one ability they collectively lack instead of their strengths… and you have the perfect recipe for resentment and a general mistrust of outsiders’ attempts to “fix” or “help” deafness.

Only in the past few decades has this trend started to reverse, particularly after the recognition of ASL as a language in the 1960s, and even then it’s often been an uphill struggle. Cue in the mass adoption of the first cochlear implant in the early 1980s– new, experimental, requiring surgery, and with a variable success rate that depended on many factors to boot– and hackles went straight back up. “Oh, great, yet another attempt to turn us into something we’re not, and you want to cut into our skulls to do it.”

The cochlear implant isn’t a cure. But it was often marketed as such to hearing parents who didn’t know better, and more often than not, these parents weren’t made aware of American Sign Language or Deaf resources as an option. People being people, the controversy quickly devolved into an “us-vs-them” mentality– not entirely without cause, given recent history. And unfortunately, a lot of misconceptions on cochlear implants from those early days still persist.

Nowadays, while the Deaf view on cochlear implants has softened to accepting implants for adults, you’ll still see some resistance when discussing implantation for children. That’s a post for another time, but essentially, it boils down to the same central issue: stripping d/hh people of their cultural identity and linguistic access. While I don’t think implantation by itself results in that— quite the opposite, actually– I do consider it wise to evaluate the motivation behind advocating cochlear implantation. Giving the kid options? Sure. Expecting it to do the work for you, or make him “just like a hearing kid”? Not so hot.

So, there you have it. By nature, Deaf people have, for the most part, learned to adapt to a world using sight and touch, to the point that for many of us, sound is just not… a thing. It’s not in our mental landscape, at all. Some people choose to add sound to their toolbox through hearing aids and/or cochlear implants. Some don’t. The key element there is choice. When someone else tries to push that choice for us, whether that’s for or against implantation, that’s where things go awry. And it’s worse when that someone is perceived as an outsider pushing to eradicate the very thing that gave birth to your cultural and linguistic identity.

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.

Our Only Option?

One of my most baffling moments took place in a Deaf Culture class, during a discussion on cochlear implantation. Now, keep in mind that this was a class comprised of mostly hearing students, with two deaf and two hard-of-hearing students. Although one of our textbooks primarily featured ASL and Deaf culture, we did also use another one that shared a variety of viewpoints on issues such as cochlear implants, sign language, spoken language, etc.

Naturally, one day the topic of cochlear implants came up for discussion. We’d publicly discussed our experiences with the implant as part of that class: the other deaf student and I had been implanted; she stopped using hers in middle or high school, but I still used mine. Both of us were implanted at young ages without our input, but neither of us resented our parents for it. One of the hard-of-hearing students was considering an implant for herself; the other didn’t think he needed one.

Our Deaf professor asked the four of us if we would consider implanting our own children as infants. Our answers ranged from “it depends” to “yeah, I would.” The important bit here is that none of us objected to cochlear implantation in and of itself. We agreed it depended on things like the kid’s health, his level of hearing loss, if we thought he would benefit from it, etc.

The professor then turned his question to the rest of the class. I think maybe one or two people raised their hands. He reversed the question: “OK, how many of you would not implant your child if you had a deaf or hard of hearing kid?”

The entire class raised their hands.

To me, it’d have made more sense if some of the students raised their hands– it’s a pretty big decision, after all– but every single one of them? Were they not seeing the irony in this? This entire roomful of hearing people chose to align with a few heavily-tailored opinions in textbooks over the direct experiences of four, living, breathing deaf and hard of hearing people right there with them? Not even an “it depends”? (And implantation is very much an “it depends” scenario.)

The reasons proffered were not much better: “I guess I just feel like she’s deaf, she should have access to her natural language,” or “It’s not my right to change her.” By this point, I and the other girl had shared our experiences with our implants throughout the semester, emphasizing that it was a tool and didn’t change who we were. Our use of sign language demonstrated that implantation didn’t preclude sign language nor involvement in the Deaf community. I had also stated– and I’d hope my online posts in our class discussion forums would have proved this– that English was my native language, not ASL. We had also discussed, at length, the difficulties that deaf people had in finding visual accommodations since so much of the world was geared toward auditory means. So, my first thought was pretty much, “Uh, didn’t you guys hear a single thing any of us said?”

This was, unfortunately, not the first or last time I would encounter something like this: hearing students, apparently educated to view American Sign Language and “full” deafness (no cochlear implants or hearing aids) as our “natural” or only option, regardless of what they had personally seen in the local community. I especially noticed this trend in interpreting or deaf education fields. I don’t know; it just feels so out of touch to me. And I worry/wonder how that affects the next crop of interpreters or educators.

“Deaf Person Hears for the First Time” Videos

You know those emotional YouTube videos of someone’s cochlear implant activation, usually ending in happy exclaims and tears of joy. Friends have shared a few of these on my Facebook wall because I have a cochlear implant too, and really, I don’t mind. Joy is a good thing to spread, and I generally applaud more additions to our bionic army.

If you have any familiarity with the d/hh community, though, you know there are mixed reactions. Some of them get pretty heated. (And the Titanic sprung a leak.) In fact, there was an article on Wired a while back titled, “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos.” I disagree somewhat with that article, by the way. So, here’s some middle-ground perspective.

The thing to remember is that these videos are usually of late-deafened individuals who want to hear again, or babies who have no clue what’s going on. The impact will be somewhat different for those who, for whatever reason, don’t regard hearing as a big part of their lives.

I became deaf at eighteen months, so I have always relied far more heavily on sight than sound. When I got my implant at ten years old, my reaction was, “Oh, I can hear more now. Cool.” That was it. I can’t miss what I’ve never had. I’ve also known several late-deafened people who found that they just didn’t really miss their hearing that much.

These videos also don’t show the time and effort that goes into post-surgery recalibration, because you often have some neurolinguistic programming to overcome. It’s not an instantaneous process.[*] As a result, they can give off the mistaken impression that the cochlear implant is a “cure” for deafness. It’s not. It’s an incredibly useful tool, but it doesn’t restore hearing as most people know it.

[*] However, it’s also not the burden that some anti-cochlear implant detractors have made it out to be; I spent one night in the hospital and went back to school after three days, and that was in 2000. CI surgeries have advanced immensely since then, to the point that it’s usually now performed as an outpatient procedure. I also resumed speech therapy as usual, just with a different focus.

ALL THAT SAID. Don’t let anyone guilt you into not sharing or liking these videos. Usually they’re intended to share the original poster’s happiness with the world, not to be hurtful or malicious, and that happiness alone is worth celebrating. The important thing is to keep them in perspective.