Disability Pride

Why Internet is Essential for the Hard of Hearing

Katherine Bouton Disability Pride, Healthy Hearing, hearing loss , , , ,
No Internet When You’re Hard of Hearing
For those with hearing loss, access to the internet is essential. Getty Images

This past week, we moved to a new apartment and I found myself without high-speed internet — no DSL or Wi-Fi connection at home — for 10 (long) days.

It was an uncomfortable reminder of how vitally important the internet is for people with hearing loss. I did have a smartphone, so I was not completely cut off from communication, but it was very limited. Here’s what no home internet meant for me:

No captioned telephone. I hear on the phone, but not well. Even using the telecoil setting on my hearing aid does not make the speaker’s voice completely clear. Captioned telephones depend on DSL or Wi-Fi for the captioning part of the call, which appears on the screen of your special phone. Two of the major manufacturers of these captioned phones are CapTel and CaptionCall. They are available free of charge to people who can provide proof of their hearing loss, and oftentimes their representative will come to your home to set it up. But you do need a high-speed internet connection.

For captions on cellphones, a company called Innocaption has been developing a system to provide simultaneous voice and captioning. It’s still got some kinks to work out, but when it works, it’s terrific. Unfortunately, at least on my phone (an iPhone 5S) and with my carrier (Verizon), I cannot get voice and captions at the same time unless I have DSL or Wi-Fi. (Innocaption, which has very responsive consumer support, confirmed this in an email: “Unfortunately, Verizon supports voice and data at the same time from iPhone 6, not iPhone 5/5s.”) I need that connection to Wi-Fi.

This is a problem anywhere outdoors, but I live in a big city, and without captions my cellphone is close to useless on the street. This is because electromagnetic interference produces a buzz in telecoil mode that drowns out talk. I guess I need to spring for a new iPhone.

I did have Ava. Ava is a voice recognition system used for in-person conversations. Two or more people sign on to the app on their smartphones. Their voices are simultaneously captioned on each user’s phone, color-coded by speaker. Ava is still in the testing stage, but you can download it here. The version I was using required Wi-Fi, but the newest version, which I downloaded (free) today, no longer requires Wi-Fi. I had a nice conversation with someone in the dog park. I could understand him over the yapping dogs because he was talking into my Ava-equipped phone.

Email was difficult. I’m a voluminous emailer, not only because I’m hard of hearing, but also because of the work I do both professionally and as a volunteer. The volume of mail I receive gets lost on the small screen of a smartphone. For those of us with hearing loss, email tends to be a lifeline for communicating with others. I did email on my smartphone (using satellite technology rather than Wi-Fi). But once I had Wi-Fi again and went back through the emails on my computer, I saw I’d missed quite a few. Also, no matter what size phone screen you have, it’s still pretty small.

Sherry Turkle‘s 2011 book, Alone Together: Why We Expect More from Technology and Less from Each Other, prompted consternation about the “death of conversation” due to an over-dependence on technology.

But for those of us with hearing loss, technology is sometimes the only way we can communicate. In a restaurant we may be looking at our smartphones, but that’s because we’re getting captioning from a program like Ava telling us what the speaker across the table is saying. At the theater we may be looking at a smartphone, but that’s because we’re lucky enough to be at a performance with I-Captions or Globetitles.

Texting and emailing are conversation for people with hearing loss. I was surprised by how handicapped I felt without high-speed internet. I lived two-thirds of my life before the internet came along, so you’d think I’d know how to manage for a week or so. I wasn’t as hard of hearing then, it’s true. But also, once you’ve enjoyed the advantages that Wi-Fi and DSL offer those with hearing loss, it’s really hard to give them up.

This post first appeared on AARP Health on 10/18/2016.
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Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

Hiding Your Hearing Loss? Not Worth It

Katherine Bouton Disability Pride, Hearing Health, Hearing Loss

New York’s second annual Disability Pride Parade on July 10 included representatives of various national hearing loss associations. They marched because hearing loss is a disability, but more importantly, because hearing loss is a hidden disability. We can never remind people too often that people with hearing loss need accommodations as much as someone in a wheelchair.

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HLAA-NYC member Ruth Bernstein at the Disability Pride Parade, with an HLAA umbrella.

 

Like most hidden disabilities, hearing loss comes with baggage that contributes to people’s reluctance to be open about the condition. Historically, hearing loss has been considered a sign of old age, impairment and declining mental capacities. Those with mental conditions, even when those conditions are controlled with medication, face similar worries about revealing their hidden health issues.

But this secrecy can have a deleterious effect on professional and personal relationships, affecting job performance and mental and physical health. I wrote about this in 2013 in a New York Times article headlined, “Quandary of Hidden Disabilities: Conceal or Reveal.”

Keeping a secret like this, living every day pretending you’re something you’re not, is debilitating. It undermines your confidence. You wonder if the disability is affecting your job performance and, if it is, if you’re the only one who doesn’t know it. You worry your employer or your colleagues will find out and you’ll lose your job. Firing someone for a disability is forbidden by the Americans with Disabilities Act, but employers find ways around it.

There is also the stress of having a condition that may get worse. With hearing loss, the progression is often unpredictable. I first lost my hearing in one ear when I was 30. I never dreamed that by the age of 60 I’d be profoundly deaf in that ear and close to it in the other. Because the cause of my hearing loss is undiagnosed, I also live with the worry that it may be a symptom of an as-yet-undiagnosed larger medical condition.

Those with disabilities bear the responsibility to speak out, but others should be sensitive to the fact that they may not feel confident enough to do so.

There are ways professionals can avoid inadvertently discriminating against people with hidden disabilities. Medical professionals need to recognize that complaints about depression and anxiety, as well as memory loss, may reflect an underlying, unacknowledged hearing loss.  Psychotherapists need to recognize the symptoms of a hidden disability with new patients, draw them out about it, and then confront the issues that the disability contributes to.

Finally, those who work with the elderly have a special responsibility to recognize hearing loss. Fully 50 to 80 percent of their clients will have hearing loss. It’s easy to mistake unrecognized — or even acknowledged — hearing loss for cognitive decline or even dementia.

 

This post first appeared on AARP Health on June 27, 2016.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.