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.

“Cued Speech isn’t a language.”

…and it doesn’t need to be. Cued Speech is a communication mode that visually represents an existing language in real time. That’s why professionals make a distinction between Cued Speech, Cued English, and Cued language.

Sometimes I’ve heard that statement used as a put-down: supposedly, because Cued Speech isn’t a language in and of itself, it either can’t be used to instill language into children, or its input will be fragmentary at best. My experience says otherwise.

As a rough analogy, you could say the same about writing. Writing itself isn’t a language; it’s a way of representing language in another format. It codifies sound into print… mostly. (English is a stupid, stupid language.) Likewise, Cued Speech also codifies sound into a visual format, and much more faithfully than written English (again, stupid language). Both are valid, successful teaching tools and modes of communication.

I think part of the confusion comes from the frequent misidentification of Cued Speech as a variant of Visual Phonics. Unlike Visual Phonics, Cued Speech was tailored for smooth transitions between different handshapes and placements, which facilitates real-time communication– in other words, you can cue as you speak at a “normal” pace. As far as I know, that isn’t feasible with Visual Phonics and inhibits its use for immersive language acquisition. However, because the two systems’ basic premises are similar (i.e., visually convey the properties of sound), they often get lumped in with each other.

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.

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.

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?

Cued Mandarin: Planting the Seed

After four years of studying Mandarin through Cued English, the two finally intersected, and I got the kick I needed to really tackle Cued Mandarin.

This is what happened: Candace Lindow-Davies, a mother of a deaf-plus son from Minnesota, went to a d/hh rehab center in China, and met a Chinese mother of a deaf-plus child. She had successfully used Cued Speech with her son, so she told the Chinese mother and rehab staff about Cued Speech.

She also invited the teachers and mother to attend the National Hands & Voices Conference last weekend in New Braunfels, Texas. Two made it, along with an interpreter.

Naturally, the news floated through the grapevine, and cued speech people started asking me to go. Mostly because I know both Cued Speech and Mandarin, AND I happen to live four hours’ drive north of the H&V Conference.

So out came my Mandarin Cue chart, the one that was developed by Cornett and a Chinese speaker several decades ago. After experimenting with the tones, I tweaked the Cued Mandarin system to better merge tones and diphthongs– double vowels, like mai, jie, luo, etc.– and drew a new chart showing these. (The old system’s way of cueing tones was OK with monophthongs, but awkward for diphthongs.)

That Friday, I left right after work for the conference, got there entirely too late at night, then the next morning, I met up with Tony Wright, who’s the regional representative for the Southwest branch of NCSA. Neither of us had any clue what to expect that morning; all we knew was that there were Chinese people here who were interested in learning Cued Speech, and we needed something to show them.

That morning was a mad scramble to compile a PowerPoint presentation along with some Cued Speech materials; Candace had hoped to introduce us to her Chinese friends over lunch. When our meeting got pushed off to later that night so their interpreter would have a chance to eat and rest, Tony and I spent the rest of the day chatting on various Cued-Speech-related things, going to lectures, and grabbing updates from Candace as she flitted in and out.


We finally met Miss Ma and Miss Cong in a small, quiet office on the second floor of the resort’s main building—a much-needed repose after a full day of lectures.

I still remember that nervousness, trying to figure out the best way to communicate. It’d been years since I had seriously immersed myself into Mandarin, and I’d forgotten so much; and there was my deaf accent, and then should we cue or sign or simcom or…?

Eventually, I sat down across from the Chinese women, with Tony voicing for me.

On the left, Miss Ma was tall and thin, with this sharp, intelligent face. On the right, Miss Cong, broad and round with curly hair, and wide eyes. Right between them was their translator Amy, tiny and wispy. And all three pairs of eyes fixed on me as I took a breath and jumped in.

I opened my laptop to show pictures of my family and introduced myself. I told them about minoring in Mandarin alongside my English degree, studying abroad in Beijing for four months, my childhood, my mother’s fight to get Cued Speech for me, and how Cued Speech had helped get me where I was today. In the meanwhile, Miss Cong jotted down several notes in her little book, and Miss Ma in her phone.

I then pulled out the copies we’d made of the Mandarin cue chart and exercise sheets, and walked them through how the system would work.

It’s funny, but after so much resistance or apathy in the US, I was struck by how remarkably receptive these women were to Cued Mandarin. After a couple of rounds, they understood how it was supposed to work.

In fact, Miss Ma would pick out things on the chart and explain nuances in Mandarin, or dive into a quick discussion with Miss Cong about how to cue particular sounds. Miss Cong asked several questions—good ones, I might add. One in particular—Miss Ma pointed out that when you have two tones next to each other, the second one will be emphasized while the first one is not. I said yes, Cued Mandarin can show that, and demonstrated.

I gave them the chart, and told them, I am not a native speaker. Although I’d practiced with children’s books, I hadn’t had the chance to test the system as thoroughly as I would have wanted. I encouraged them to tweak the chart as it best fit their language.

Soon they will be back in China with copies of the Mandarin cue chart and materials. I have Miss Cong’s email; she has mine. I told them to contact me if they needed anything, and I’ll be emailing them soon.

The seed’s been planted. Now, we wait and see.