By the Way, She Has a Cochlear Implant

What if hearing aids were as unremarkable as glasses? This is an idea – a goal – that I and others have been tossing around for years. How to remove the stigma and lower the cost of hearing aids so that they are used as casually as glasses.

Amazon Prime Video is showing an online series that does just that – and more. The central character in “Undone,” 28-year-old Alma, wears a cochlear implant. In the first minutes of the first episode we see Alma putting a cochlear implant on her ear as part of her morning getting-dressed ritual. No comment is made about it. It’s just there, part of who she is.

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Alma, left, and her cochlear implant. Undone, Amazon Prime Video

The implant is white and Alma’s hair is black, so it is often visible. But it’s visible in an unremarkable way. It’s not until well into the series that we find out why Alma wears it, and how she lost her hearing. After she had chicken pox as a child, her parents realized she wasn’t hearing. At first they sent her to a Deaf school, where in flashbacks we see she learned to sign and was happy with other kids who were also Deaf. But Alma’s parents wanted her to get an implant, and Alma reluctantly agreed. We briefly see her working with a hearing-rehabilitation counselor after the surgery.

Alma has a lot of problems, but hearing loss isn’t one of them. The implant occasionally is part of the plot, although as with the first scene when we see her putting it on in the morning, it goes unremarked. When Alma wakes up in the hospital after an accident, she can’t hear until someone hands her the implant. At one point she throws it on the floor in frustration – but the frustration is not over her hearing. For Alma, throwing the implant is the same as throwing a shoe across the room (although potentially much more costly – don’t throw your cochlear implant across the room).

Amazon describes Undone as a “genre-bending, animated dramedy that explores the elastic nature of reality through its central character, Alma.”  The show isn’t about hearing loss. It’s about time travel, altered mental states, mental illness, a dead father and a mystery about his death. The animation is beautiful, hyper-real but also ghostly. Every once in a while the world flies apart or Alma falls down a rabbit hole, and the animation makes it believable.

I have some differences with the show as regards hearing loss. Alma’s hearing loss is bilateral and she’d probably wear two implants rather than one. She also has what must be a remarkably well fitting earpiece, because it never falls off no matter how much she’s tossed and turned around by her version of reality. And then of course it also survives being thrown across the room.

But how great to have a cochlear implant play an almost incidental role. Alma’s cochlear implant implant is as unremarkable as glasses.

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For more about living with hearing loss, read my books, available at Amazon.com and Barnes and Noble, and maybe at your favorite bookstore or library. If it’s not there, ask for it!

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I Have a Disability. How About You?

December 3rd (that’s today) is National Disability Day, a United Nations recognized event also known worldwide as the International Day of People with Disability.

National Disability Day promotes education about the needs of people with disabilities as well as compassion and understanding of the challenges they face.

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Some disabilities are visible at a glance. People dependent on wheelchairs for mobility may have different degrees of severity of physical impairment but if they need a wheelchair, for whatever reason, they are eligible for accommodations under the Americans with Disabilities Act.

Hearing loss, on the other hand, is not only invisible but not everyone with hearing loss is disabled. Mild hearing loss is not usually a disability. Severe to profound hearing loss is, and these people are entitled to accommodations under the ADA. But many who have severe and even disabling hearing loss refuse to acknowledge it, fearful of stigma and discrimination. In order to get accommodations under the ADA, you must acknowledge disability. Many are unwilling to take that step. That complicates advocacy for all of us with hearing loss.

Deputy Inspector Daniel Carione of the New York City Police Department put this eloquently in a talk he gave at a meeting of HLAA’s New York City Chapter last spring. Carione was a 22-year much-decorated veteran of the NYPD when he was forced to take early retirement in 2011. The reason? He wore hearing aids. He decided to fight the ruling. Before he had any legal ground to stand on, he told the audience, he had to make an important admission to himself.

“The Americans with Disabilities Act is not this heroic shield that falls from the sky and protects each and every person who may or may not be disabled,” he said. “You have to be disabled. That was very difficult for me to accept.”

Dan Carione does not look disabled. He was—and is—a powerful physical and intellectual presence. To use the word disabled about himself defied the visible reality. But his attorney knew that admitting disability was essential. “One of the first things she taught me was to use the word disabled. It’s counter-intuitive. It hit me in the head like a dart because I didn’t want to use the word disabled. But if you’re not disabled, the ADA can’t protect you.”

As a hidden disability, and one with stigma attached, hearing loss is often not acknowledged. This harms not only those who refuse to acknowledge it but it also makes getting accommodations for the rest of us even harder. If a movie theater thinks you’re the only person in the audience who needs captions, that makes it easy to say it’s an expense they can’t afford. I go to a movie theater in the small town where I live part time. The audience is preponderantly gray. Statistics tell us that many have hearing loss that is severe if not disabling. Half of those in the United States 75 and over have disabling hearing loss, according to the NIDCD. But you’d never know it because you can’t see it and they aren’t talking about it.

So on this National Disability Day, if you have hearing loss and can’t hear a speaker at a lecture or at your place of worship, can’t hear at a movie, can’t hear that airline announcement, speak up. Ask for a hearing assistive device. Ask for captions. Ask for accommodations. Speak up for yourself, and you will be speaking up for all of us.

 

For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health.Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.