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.

An Invisible War Wound

An Invisible War Wound: Out of sight, and mostly out of mind.

When we think about the injuries our servicemen and -women endure, on this Veterans’ Day, we naturally focus on major life-changing injuries like Traumatic Brain Injury and Post-Traumatic Stress Disorder. We worry about suicide in veterans. We see veterans struggling to learn to walk again with prosthetic limbs or learning to hug a child using a prosthetic arm. These are all horrifying consequences of war and no one would minimize them.

But there is a war wound we don’t see, and for the most part don’t think about. Hearing loss and tinnitus are the two largest categories of disability in the military, and have been for some time.

These are not comparable injuries in terms of the scale of destruction, and they are not life-threatening. They are often secondary to TBI or other debilitating injuries. But they’re permanent. And long after a veteran has begun to recover from these other wounds physically and emotionally, he (or she) begins to realize the hearing loss or tinnitus is not going away.

Captain Mark A. Brogan of the United States Army was injured in a suicide bomb attack in 2006. He spent months in a coma at Walter Reade Medical Center. It was not until his traumatic injuries had been treated that he began to think about his hearing loss, and to realize how it and his TBI were entwined.

At a panel discussion with other veterans earlier this year, he talked about the lasting effect of the TBI on his hearing. The part of the brain that controls speech perception was injured in the blast, and combined with the injury to the ear itself made speech very difficult to understand.

Hearing loss and tinnitus also combine negatively with other injuries. Trouble hearing in a noisy place can trigger his PTSD, said Sean Lehman, US Air Force,. The PTSD in turn exacerbates the tinnitus. “It makes my brain get irrational, you know? It makes my PTSD more difficult to deal with.”

Sgt. Lehman sustained third-degree burns over 40% of his body, and his physical injuries obscured the fact that he’d also lost his hearing — for almost two and a half years. “Things I considered unimportant turned out to be important,” he told the audience. It was only when his three-and-a-half year old daughter was impatient with her father’s inability to hear her that he sought help for his hearing loss.

In June Captain Brogan and a panel of other veterans gave a workshop at the annual Hearing Loss Association of America Convention. They are part of a group called Heroes With Hearing Loss, and they’ve banded together not only to raise awareness of hearing loss in veterans but also to give veterans the opportunity to talk about hearing loss to another vet.

“I was 25 years old at the time,” Captain Brogan recalled when he realized the severity of his hearing loss. “I don’t want to wear these [hearing aids], you know. Are you kidding me? You, know, I’m young, freshly out of the military.” The others nodded in agreement. “It was a battle to accept it. Kind of a grieving process. It’s something that visibly says, ‘Hey you’ve got a problem.’”

Sean and the others all talked about the issue of credibility, how important it is for an injured vet to hear from other vets ways to come to terms with it.

Master Sgt., Donald Doherty, a retired Marine and veteran of Vietnam, lost his hearing as a result of gunfire and artillery noise. “Noise is an occupational hazard for warfighters,” he said.

“Marines, and anyone in the armed forces, have been instilled with a sense of pride, the need to act independently, to do it yourself. It’s a sign of weakness if you reach out for help.” But, he added, you begin to realize you do need help. You realize it’s affecting “not only yourself but everyone around you.”

Sgt. Lehman was the first to use the word “credibility” about the trust soldiers put in each other. “Dr. Jones [Amanda E. Jones, Aud-D, CCC-A)] can tell me what works, and I’ll listen. But if Mark tells me, I’ll take his word for it.”

Don Doherty, who is also now on the Board of Trustees of HLAA, points out that “Veterans recognize the noise hazard but make the sacrifice willingly because it’s their duty and mission.” But, he says, “My brothers in arms need to reach out to the VA and get tested. Too many of them don’t.”

Sean Lehman asked Dr. Jones what differences she noticed between “normal” patients and veterans, who, he added – getting laughs from the others on the panel, “we all know are not normal.”

Dr. Jones estimated it took an average of 15 years for a veteran to address the issue of hearing loss. It’s partly a question of dealing with other medical conditions, she said, but it’s also a matter of pride. Eventually, she added, it becomes a matter of acceptance: “I’ve got an issue and I have to do something about it.”

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These invisible injuries take on a larger significance not only because it is difficult for veterans to come to terms with the loss — but also because society is likely to ignore it.

“‘I would love to hire a veteran with a disability; they will get top priority when I hire new associates,” a potential employer might say. Joyce Bender, who runs a search firm that helps place people with disabilities, says that what they really mean is, “Send me a veteran with a visible disability,”

This is not to say that an employer should not go ahead and hire the veteran with the visible disability – it’s good for the soul and it’s good for business. But don’t ignore the vet with a hidden disability: PTSD, mental illness — and yes, hearing loss.

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Both the Hearing Loss Association of America and the Hearing Health Foundation have online resource centers for Veterans.

Heroes for Hearing Loss travels nationwide and can be contacted at HeroesWithHearingLoss.org

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Originally published on November 10, 2014 by Katherine Bouton in What I Hear, Psychology Today.