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.

 

 

 

 

 

13 thoughts on “I Have a Disability. How About You?

  1. Katherine’s writing is so clear and powerful. I thought of many friends who should speak up but don’t. Over the weekend I told my oldest friend to see an audiologist. She can hardly hear at all, but she crumpled, said I’d spoiled her whole evening, got mad at me for attacking her. It took a very long time to smooth things over. How to get someone like her (age 76) to accept her hearing loss and take corrective measured may be a bridge too far.
    Thank you, Katherine, for always speaking out and for your important book. — Leslie

    Liked by 1 person

    • Thanks for the very nice compliment Leslie. It means a lot. Your friend, if she ever gets to the audiologist, will probably be able to get those nice little hearing aids that have a small behind the ear component and a little “dome” in the ear. Expensive but easy to wear and very effective.

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  2. Powerful. I am hearing imlsiredcwho fights all the time to hear. I use assistive devices when I can ( Ritz theatre and open captions one day of the month in theatres) but courts, doctors office do not understand the hearing impaired. They understand the deaf. The battles I had in court for people too understand – unbelievable.. the ADA hurt rather then helped me. Before- I got most jobs – after Ada – barely any – in fact Stacy ‘s bookstore asked if I had any personal challenges ( question illegally asked because they did not offer me a job ) I had to create my own job to succeed .
    Now I have a pair of 15 year old aids – I am struggling to save $6590 so I perhaps will be living a life as a almost deaf person.

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    • I’m so sorry. Such familiar woes. It sounds like you are definitely ready for new hearing aids. Have you tried other sources? Costco if there’s one near you has hearing aid specialists and sometimes audiologists on staff. Speaking of creating your own job — that’s what I did too. After 20+ years at the NY Times I just couldn’t hear well enough to do the job I loved. So I found a new one — writing blogs and books.

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  3. I like the point you make, that needs to be underscored, that when you speak for yourself you are speaking for many others. It’s like a double moral imperative: to help yourself and thus helping others.

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  4. Hj Katherine, I.m guiding a lady with Mineres disease, I.m giving her information about hearing loss and hearing aids. I don’t know much about hearing aids with Blue tooth.
    I’ve been trying to get in touch with my friend, Karen Utter to get more information about hearing aids with blue tooth. I’m hoping you can give me information.
    Thank You,
    Patty McIntyre

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    • Hi Patty,
      Most hearing aids have Bluetooth capability. You may be thinking of Made for iPhone (or Android) hearing aids, which allow you to hear your phone (and anything on it like audiobooks) wirelessly through your hearing aids.If you don’t have a Made for IPhone hearing aid you can use a streamer. Karen is a good source for info. I also have a couple of chapters in my new book (see link at bottom of post) on Bluetooth and other features on hearing aids. The book also discusses Meniere’s, by the way, as well as vertigo and tinnitus.

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  5. I have a left side CI and a right side Link HA. Without these devices I truly don’t hear thunder. In most conversational situations I get along quite well but in most public venues: airports, train stations, crowds of any kind and a gathering of 6 or 8 friends where there are two or more conversations going on then my ears are on crutches. But they are invisible crutches. My head knows I am disabled. But my head sometimes fails to get into the game. The result is that I end up feeling left out and at times frustrated or just angry.

    Since there are no outward signs of my disability (other than the devices themselves which to most people seem to convey the message that my hearing has been fixed) it is up to me to make sure that others know of my needs. This does not always match the expectations of those I am trying to understand. It will have to be repeated – often with the same people.

    On one side of the hearing loss coin is how much better I am hearing while on the other side is the need to help others to understand that my hearing has NOT been fixed.

    Thank you Katherine. To me, this is perhaps the most underrated part of the hearing loss journey.

    Liked by 1 person

    • Thanks for this insightful email. This paragraph especially struck me:

      Since there are no outward signs of my disability (other than the devices themselves which to most people seem to convey the message that my hearing has been fixed) it is up to me to make sure that others know of my needs. This does not always match the expectations of those I am trying to understand. It will have to be repeated – often with the same people.

      Liked by 1 person

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