Defining Disability

Do I have a disability?

It depends on when you ask.

If I am alone at home with no noise except my breathing and quiet tapping on the computer keyboard, and I’m wearing my hearing aid and cochlear implant, then No, I don’t. Or at least I don’t perceive the disability. If the phone rings and the captioning service works, then No, I don’t. If I join a Zoom meeting that’s captioned, No, I don’t. If I’m watching TV with captions, No, I don’t.

TV Captions

That doesn’t make me a person without a disability. It just makes me feel like one.

Under the ADA, there’s no question about my status. “An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”

The accommodations I describe  – a quiet home, hearing aid and cochlear implant, captions on my phone, captioned Zoom meetings and TV – alleviate the hearing deficit to the point that I forget I have it. And that’s what we aim to do when we advocate for accommodations in the outside world.

These accommodations allow me to participate in the ADA’s “major life activities.” But not entirely, and this is why I am a person with a disability. With hearing loss as severe as mine, accommodations don’t cure or reverse the disability. They lessen the struggle. They mitigate it. But they don’t make it go away.

For those with less severe hearing loss, which is the vast majority of people who self-identify as having hearing difficulties, accommodations don’t just alleviate but may eliminate the disability. If you have mild to moderate hearing loss, you might have trouble hearing in a restaurant. Accommodations in a restaurant can be something as simple as a corner table, carpeting, acoustic tiles or other noise absorbers, tables spaced farther apart. We don’t think of them as accommodations but they are. They make a built environment compatible for people who might otherwise not be able to participate. In this case accommodations don’t just alleviate the disability, they may make it disappear.

Sometimes accommodations aggravate the disability. I’d put movie-theater cupholder captioning screens in this category. They are so awkward to use, and so often mistakenly programmed, that they simply remind me that I can’t hear the movie. If all movies had open captions along the bottom of the screen, that would be an accommodation that would allow me to forget my disability.

Do I have a disability? Yes.

Am I disabled? No, because accommodations allow me to function. Without accommodations I would be disabled – I AM disabled. But only temporarily.

The “people first” preference for disabilities is correct not only in the sense we usually use it – I am a person first, and my disability is a part of me. But it is also correct because this disability I have isn’t always disabling. So it shouldn’t define me.

I welcome comments on accommodations that make you forget you have a disability, as well as accommodations that just make it harder.

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For more about living with hearing loss, read my books at Amazon.com.Smart Hearing is a guide to everything about hearing loss. Shouting Won’t Help is my personal story of loss and renewal. Both are available in paperback and on Kindle. Available only at Amazon.com unless you can persuade your local bookstore to order one for you.

When Seeing is Hearing

Isolation isn’t conducive to writing about communication difficulties. Since communication difficulties are what this blog is about, I haven’t written much in recent months.

I’m getting along just fine with no one to talk to. I’m hearing well. Or at least I feel like I’m hearing well. But that’s because everything I hear – the television, the telephone, Zoom calls – is captioned. When I can see the words, I can also hear them.

That seeing enhances hearing is a well known phenomenon, which I’ve written about in the past. Researchers call it the McGurk effect, named after one of the British scientists who discovered in the 1970s that people comprehend speech better if they also see it. They called it “hearing lips and seeing voices.”

This is why good communication strategies are important. It’s why we need to make sure we can see a speaker in order to hear them. We all intuitively speech read. The speaker’s facial expressions contribute to our comprehension.  How the words are formed in the mouth and on the lips is also important, which is why we used to call it lipreading. Now we know that lipreading is augmented by facial expression and body language, and we call it speechreading.

I’m a good speechreader, but only if I can also hear what’s being said. If I hit the trifecta — hear the speaker, see the speaker, AND get captions — I hear perfectly! Fortunately for me, that’s often the case with virtual meetings and conversations.

There are times when captions fail me, however, especially with live TV. I like to watch the network news to catch up on the day. One network, my favorite, has terrible captioning. The captions routinely start stuttering, the same few words repeated over and over again while the speakers cluelessly move on. Eventually I give up and change the channel. Readers if you also have this experience, is it worse on a particular network? I’m reluctant to slam mine, but feel free chime in.

This network is presumably using ASR — Automatic Speech Recognition. Unfortunately the network’s system can’t even recognize the names of the network’s star correspondents. Far superior is CART captioning — Communication Access Real Time Translation. It would seem well worth the small investment in a good CART captioner. Networks, listen up! increase your viewership. The same problem exists, by the way, with live sports captioning.

Maybe I AM hearing better. Without the anxiety and stress of trying to hear and understand all day — trying to communicate — I’m more relaxed. These past few months, as bad as they’ve been, have for me included one benefit, a big benefit. I can hear.

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Here is a link for filing a complaint to the FCC. You will not be able to complain about a recurring problem, just one specific station/show on one specific date. So if you are trying to watch NBC Nightly News, for instance, you will have to choose one specific date and time to complain about.