What the ADA Means to Me

30 years ago this week, George H. W. Bush signed the Americans with Disabilities Act, which had been passed by a bipartisan Congress. Change for people with visible disabilities came quickly. Curb cuts became the norm, and allowed people in wheelchairs to cross the street. Wheelchair ramps aided not just wheelchair users but people with strollers or walkers. Braille became standard on public signage. Every governor and mayor had an ASL interpreter at his or her side when speaking in public.

Less easily or quickly addressed was the invisible disability of hearing loss. It is thanks to Rocky Stone, the founder of the Hearing Loss Association of America (then called SHHH), that hearing loss was included in the list of disabilities covered. One essential accommodation — in my opinion the most important for people with hearing loss — was the development of CART captioning. This photo shows one of my early experiences with it, speaking to a hearing-loss group.

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CART captioning.

On the 20th anniversary of the ADA, ten long years ago, I had recently quit my much loved job as an editor at The New York Times. I couldn’t hear well enough to manage the many meetings and phone calls and other requirements of the job. I could have asked to be transferred to a position which would not have required so much public and workplace interaction, but I was worn out from many years of trying to keep up. The obstacles seemed insurmountable. The technology was not very good.

Today, ten years later, the accommodations that would have made the workplace accessible to me exist, and I would have had the confidence and determination to ask for them and to use them.

I would have asked for CART captioning in all company-wide meetings. I would have asked for a conference room in our department to be looped, and for my department’s meetings to be held in that room. I would have asked for looping for the larger conference room, where Page One and other meetings were held. I would have asked for a captioned telephone. I would have used my own smart phone for calls, using the captioning app Innocaption+. I would have used speech to text captioning in smaller groups: Otter for the iPhone, Google Transcribe for an Android. I would have asked people – probably over and over and over again – to look at me when they speak, not to talk over each other, to repeat key phrases if I miss them or to paraphrase them.

Other benefits for people with hearing loss that stem from the passage of the ADA involve FCC requirements for cell phones and landlines to be compatible with hearing aids. Movies are captioned (usually via a device you ask for at the theater), television is captioned. The governor or mayor will include a CART captioner as well as the ASL interpreter for public events. Hearing loops allow people to hear in public spaces simply by changing the program on a hearing aid. This is really just a smidgen of the changes that have come about. Readers, please suggest others that have been meaningful to you.

In my term as president of the New York City chapter of HLAA, I was part of groups advocating for accommodations in the public and private spectrum. One of my proudest moments was the signing in 2016 of two bills by Mayor Bill De Blasio that advanced accommodations for people with disabilities. These in fact served people with hearing loss but also all New Yorkers, as many accommodations do. The first required all city agencies to have a disability-services facilitator on staff and to publicize the name of the person and contact information. The second required that meetings and other events must include information about accessibility on the announcement or invitation. (Prior to this bill, a person with hearing loss might go to an event that had been advertised as hearing accessible and find only an ASL interpreter.)

The picture shows some of the people who made those changes happen.

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Left to right, Katherine Bouton, HLAA member and advocate Ruth Bernstein, Co-sponsor of the bills City Council Member Helen Rosenthal, HLAA member and advocate Jerry Bergman, Mayor Bill De Blasio. (I can’t identify the  two men in the background.)

 

The following year the mayor signed a another bill, requiring installation of hearing loops in all new or renovated city buildings with a base cost of $1 million. And shortly after that, the historic landmarked City Council Chamber in City Hall was looped.

The fight for accommodations is in no way over, but it’s being waged. The pandemic has revealed the essential need for transparent masks in medical settings. Another of our chapter members, Toni Iacolucci, is working with New York City’s massive hospital system to make hearing accommodation available.

In 2016, at the New York Yankees’ annual Disability Awareness Night, our chapter received an award from the Mayor for our contributions to a more accessible New York.

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Left to right, Katherine with the citation, Toni Iacolucci, Deputy Commissioner for People with Disabilities Kleo King, Commissioner Victor Calise.

We have a long way to go in getting full accommodation for people with hearing loss. But the ADA gives us the legal means to continue our fight. Perhaps as important, the ADA has raised awareness of discrimination against people with disabilities and their rights for equal accommodation. Let’s hope by the 40th anniversary we won’t have to be working so hard to provide access to all people, no matter how severe their disability is, or how invisible it is. Thanks to HLAA for leading the way.

Communicating in the Age of Covid: An Unexpected Benefit

There aren’t many bright spots when it comes to Covid 19. The death toll is enormous, the financial impact is potentially catastrophic, the fear of what lies ahead can be overwhelming. Still, for many with hearing loss, this period offers an insight into what it’s like to have equal access to spoken communication.

Many of us “manage” our hearing loss as best we can, through hearing aids and cochlear implants, through assistive listening devices, through speech reading and attention to communication strategies. I have a cochlear implant and a hearing aid. As grateful as I am for their superior technology, they’re not enough for me to participate fully in the hearing world. I employ these various devices and strategies with somewhat limited success.

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Giving a reading in Seattle. Behind me you can see CART captions projected on a screen.

But in the age of Covid, the playing field has been leveled. It is often said that we hear with our brains. It’s equally true that we hear with our eyes.

As an advocate for people with hearing loss, I attend a lot of meetings. Most have to do with disability access and most offer live CART captions as well as accommodations for other disabilities. I’m able to keep up fairly well, although the effort of reading captions during an in-person meeting gets exhausting.

These days, however, all our meetings are virtual, and many of them are captioned. See below for instructions for getting captions.  With a Zoom meeting or Google Meet or any other captioned forum, an extra element is added that makes all the difference for me. These apps allow the speaker’s face to be isolated on the screen. (Click on the icon on the upper right of the app’s screen and then choose “Speaker View.”) That means that in addition to hearing the voice and reading the captions it’s very easy to read lips as well.

A good CART captioner makes the captions seem to synchronize with the spoken word. With my ears alone (plus hearing aid and cochlear implant) I miss a lot. With CART captions, the speaker’s voice actually sounds clearer and easier to understand. Am I hearing the words or am I reading them? I often can’t tell.

Add the visual element of the speaker facing you on the screen, and you’ve got triple input. Researchers call this multiple the McGurk effect, named after one of the British scientists who discovered in the 1970s that people comprehend speech better if they hear it in multiple ways. The scientists called it “hearing lips and seeing voices.” That’s why we need to see the speaker’s face clearly. A friend of mine likes to say, “Don’t speak till you see the whites of my eyes.” That is, she needs to see your lips in order to hear your voice. Adding captions to eyes and ears is an important third element. In a live gathering, adding hearing assistance in the form of a hearing loop is another way of improving the hearing experience through multiple inputs.

FaceTime also turns out to be an invaluable tool, although it doesn’t use captions. I always thought FaceTime was basically for fun, for talking to your grandkids or your boyfriend. But the McGurk effect applies here too. FaceTime isolates the speaker’s face close up.  This vastly enhances the ability to speech read. So, just as with good CART captioning, if I’m on a FaceTime call, I’m not sure if I’m hearing the speaker or reading lips. The input from eyes and ears are inextricably entwined.

In this time of social distancing, masks, self-quarantine, living apart from one another – we may feel isolated. I did at first, and I wrote about it in my column Coronavirus Concerns for People with Hearing Loss. It’s not just the disease. (As we learned more, I updated that column: I Take It All Back.)

But as I’ve become more comfortable with technology, everything’s changed. Eyes, ears and brain working in sync make me feel more connected than ever.

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To access Zoom captions: The person who initiates the meeting can either hire a CART operator to provide live captioning or can offer automatic voice recognition captions (which are generally less accurate). You, the guest at the meeting, click on “Closed Captions” on the very bottom of the Zoom screen. The captions will run just above that. You can adjust the caption size by clicking on CC and scrolling down. Sometimes “chat” interferes with the captions. If that’s happening, click on “chat” and the box with chat messages will appear on the right. You can move your whole screen to the right to get them out of sight. I know this sounds complicated but once you try it, it gets easier.

For more on the kinds of technology that are useful for people with hearing loss, especially now, the websites of both the Hearing Loss Association of America and the Center for Hearing and Communication offer good tutorials, including webinars.

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For more about living with hearing loss, read my books, available at Amazon.com and maybe at your favorite bookstore or library. If they’re not there, ask for them.

Here’s a link to my most recent book: Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss.