I love the theater, especially accessible theater, so when I read about a new show that would be performed simultaneously in English and American Sign Language (ASL), I was intrigued. There were two casts — the “main” cast speaking (and signing as it made sense in the plot) on the stage and a “shadow” cast on a balcony above the stage who signed the dialogue below. I was excited to see how it would work.
At the theater, the crowd was a mix of people — some using sign language and others speaking. It was a lively group. Reading through the program notes before the show, I was struck by the following quote: “As I Was Most Alive with You began to take shape, he [the playwright] vowed to tell this story in a way that would feel as accessible to Deaf audiences as hearing ones.”
That is a wonderful goal, and one that I think he achieved, but I couldn’t help but wonder, “What about the rest of us?”
Experiences like this can sometimes make hearing loss feel like a no man’s land. Not quite Deaf, but not quite hearing either. Like you are betwixt and between two worlds. Fitting into neither completely, but both within your sights. This no man’s land is vast, and it is growing. If recent trends keep up, hearing loss may one day be the new normal.
A second incident the next day reinforced my feeling of in-between-ness. The A&E network dedicated an episode of its Born This Way program to deafness. Produced by Marlee Matlin, the show called “Deaf Out Loud” featured three Deaf/deaf families as they worked through education and communication choices for themselves and their children. If your TV provider allows it, you can login and watch the show here.
It was a fascinating program, but a bit misleading, providing statistics for the broader hearing loss community — it stated that over 35 million Americans have some form of hearing loss — but then only featuring families that considered themselves part of the Deaf community. According to various reports, about 2 million Americans are functionally Deaf, and even fewer use sign language as their primary form of communication. While the show seemed to want to represent all of us in the broader deaf/hearing loss community, I did not see my life experience reflected anywhere.
Perhaps it is because those of us with hearing loss fit in better than we think we do. Many of us grew up in the hearing world and have assimilated accordingly. We communicate orally, have hearing friends and send our children to hearing schools. We don’t know sign language and would have more trouble communicating with those that sign than with those that hear perfectly.
While we struggle on a daily basis to operate effectively in the hearing world, we manage to do it, often times without pomp and circumstance. We use hearing aids and cochlear implants, assistive listening devices, captioning and other tools that help a lot, even though they require substantial mental and physical energy. No wonder we face hearing loss exhaustion at the end of a long day of communication challenges. Our story is not that exotic, entertaining or easily understood. Maybe that is why we end up in no man’s land, paddling as hard as we can to stay up with the current.
Only by educating others about the specific experience of hearing loss can we raise awareness about the large and powerful group that we are. What can you do? Talk to people about your hearing loss. Explain the challenges you face and the ways they can help you hear your best. Together, we can build bridges to both the Deaf and hearing communities, creating a better world for all of us.
Readers, do you sometimes feel betwixt and between?
Wow…Shari..you hit the nail on the head…living betwixt two worlds…deaf and hearing…we late-deafened adults, are so challenged with where we really fit it.
The struggle continues…it’s a daily grind.
The “hearing” world doesn’t really know how to effectively communicate with us..they don’t understand “auditory fatigue” and other phenomena that only people with hearing loss, can understand.
Thanks for another great article. Your perceptions/observations, make me feel not so alone.
You are definitely not alone! Thanks for sharing your thoughts.
You hit the nail on the head with this article Shari. Thank you!
Thanks for reading and sharing your thoughts.
Shari,
On Friday I went to an event called Engage for Change at the National Center for the Deaf in Queens. It was a very interesting event with some excellent discussion about how to achieve changes that will help those with hearing challenges. At the beginning some graphs were displayed comparing educational levels and employment rates for Deaf and Hearing. I looked at those charts and wondered which category I fell into. When I raised the question later in the meeting, I was told that the deaf category included those with hearing loss, but I still had doubts about dividing the world into binary categories. Hearing loss is a continuous variable and it is not at all clear where the dividing line would be.
Most of those at the meeting were signing. I was among the minority using the CART provided (by the always wonderful Lauren Schechter). That division is part of the problem. During the discussion I praised the efforts of HLAA. One of the attendees, a deaf young woman audiologist, responded that HLAA is great, but does not really serve the deaf. I think there is a certain amount of truth to that. At the same time, the organizations that serve the deaf may not serve those like you and me, who have severe losses that occurred late in life. To a certain extent this division may be necessary and useful. Those with significant, adult-onset hearing loss have different needs and use different tools from the deaf to cope with the daily challenges. But I do think that these organizations could bridge the gap better than they do, and that bridging that gap will make a more inclusive base that will be more powerful and effective politically.
Jon Taylor
Thank you sharing your insights. Sounds like an interesting meeting.
Shari, this is a great column and you raise some familiar though continually vexing problems. Watching ASL is an aesthetic experience, even a thrilling one. Watching someone fumble with an assistive listening device or saying “What?” multiple times is not.
I think the culturally Deaf and people like us with late-onset hearing loss share many many issues. I’ve tried to bring the Deaf into our chapter meetings. We provided an ASL interpreter for several months last year, but no one showed up. How can we work together? Any ideas?
As you know, I have a book coming out in October, SMART HEARING in which I address many of the daily issues people with hearing loss face. People who are Deaf face these same issues, but I don’t expect many Deaf readers. They’ll look at the contents and see chapters about hearing aids and PSAP’s and assistive listening devices, and assume it isn’t for them. Those particular chapters aren’t.
But why can’t we collaborate on issues that matter to all of us: better signage in all areas of transportation, captions on airplanes (especially safety announcements), accessible hotel rooms, discrimination in the workplace, the lack of accessibility in hospitals and other medical settings. I urge HLAA to put as much emphasis on captioning as it does on looping. Captioning benefits all of us. Looping, as great an experience as it is, benefits many fewer people. I’m not against loops — I just think captions should be part of every discussion. That way maybe the Deaf will join us in our efforts.
Sorry this is so long!
Thanks for sharing your thoughts on the subject. I am looking forward to your book launch!
I totally agree. Captioning is “universal access” – and no one has to self-identify to use it. While people who are Deaf (capital D for Deaf culture) and use sign language, they also watch captioned television and go to captioned movies.
I am deaf (small “d” – and late-deafened) but use cochlear implants to hear. So there are many ways to be deaf.
So true. Thanks for weighing in.
hi Shari
I’ve always felt that I live in a kind of twilight world because of my hearing loss.
So true. Thanks for sharing your thoughts.
This really hits home. I am a writer who is working on a children’s book with a hearing impaired main character. When getting feedback, I was surprised by how many people confused hearing impaired with deaf. I would get comments like “If he can’t hear, how could he . . .” I recently attended a showing of the movie, “Star Wars” where the music was played by a live symphony orchestra. They showed the movie with captions (I’m guessing because the live music was sometimes louder than the dialog). It was a really fun way to see a movie and understand all the dialog. I’d really love to see captions used more often to benefit those with any level of hearing loss.
I would love captions on everything! LOL! Thanks for sharing your experiences and good luck with the book. Sounds great!
While I have a profound hearing loss , I always seem to fit best in the hearing world , even though most times I feel stuck in middle somewhere . Deaf culture is just so foreign to me, I’ve tried many times to attend Deaf functions and always felt , well , like a foreigner . I even tried taking a few sign language classes and while I thoroughly enjoyed them , I just never felt comfortable or confident enough to use it . I love captioning , and it sure has come a long way in helping make the hearing world more accessible to the deaf world .
Thank you for sharing your perspective.
WOW! It is 3:30 in the morning and I came across this blog. To explain – I am a”deaf” person by birth or deafened by day 3, who knows… but not totally deaf – I hear some in my right ear practically nothing in my left ear. Yes, I can’t hear s, sh ch and all that…or hear the difference between b d g etc…OK now we got this piece out. To clarify I even hear the human voice on a regular phone. The caption phone seems to miss whatever I miss. It is only recently that a hearing aid (note singular) has offered any benefit. But I still cannot hear my cat meow or the birds sing. My parents fortunately sent me to the Sunshine Cottage in San Antonio TX, at the age of three. It is a school that embraces the oralism tradition (lip reading) so therefore I do not understand sign language.
Only this month – out of sheer frustration – twice I walked out of a group meeting that failed to grasp my needs despite my alerting them to my needs – to have closed captions on the TV screen. Or have the speaker at the podium where I can see. Captioning has been a godsend and enabled me to play catch up – i.e. watch old movies that I could not ‘hear’. Maybe someday I’ll watch the movie – Children of the Lesser God as I sure couldn’t “hear” much in the theater. Ironically so many people felt I would love the movie. Nope, it left me frustrated. Meanwhile I believe the two groups I walked out on have finally “heard” me and will address the issues more appropriately in future meetings.
Anyhow I loved your expression of NO man’s Land – not quite deaf not quite hearing either. PERFECT!
Once it was suggested that I read the play script along while watching the production on TV which was without captioning. Hello?? I don’t have two sets of eyes – and I, too, love the visual drama of the theater. And being spoken in British English I couldn’t keep up with the script.
Yup, for those of us with some hearing it is a no man’s land and yet I often forget that’s where I am stuck. By the way I was educated pre ADA – that is I had absolutely no assistance while going through college etc. I was even kicked out of my first college because they felt I would not be able to meet the foreign language requirement – all because I asked the professor to let me hear the oral exam twice. And it was in Castilian Spanish, to boot. Professor said it would be unfair to let me hear it twice. Well I did learn to speak spanish but not there!
OK off my soap box – this just reminds me again how eternally grateful I am to my parents who made the wise decision to have me learn to lipread and for the most part I’d say I’ve mainstreamed quite well into the hearing world. But heck I don’t know what I don’t hear.
Thank you for sharing your story. You are definitely not alone.
There’s not even a good word for hearing impaired (which isn’t). That would help – and maybe raise consciousness too… What would it be?
Good point. There is much disagreement on the right name for it. None of the choices seem quite right. Thanks for your comment.
I prefer hard of hearing or a person with hearing loss, not hearing impaired. You hit the nail on the head with being ‘in between.’ I was born with significant hearing loss, but because of the type of hearing loss I have, my speech is very good. Most people don’t realize hearing is a challenge for me. I get tired of having to explain myself. As with most disabilities we need to make the world a more inclusive place- if there was CC everywhere without have to ask for it, wouldn’t that be great? Speech reading exhaustion at the end of the day is real.
CC everywhere would be great! Thank you for sharing your thoughts.
I am so grateful for closed captioning, I watched my mother struggle to hear the TV and get complaints former neighbor in the next apartment about her TV volume. Her first hearing aid was a big thing attached t her slip with a wire from there o her ear mold. I din’t understand hearing loss as well until I inherited it a few years after he death. Now I know why she didn’t join in the dinner table conversation, and why she talks loud and long wen it was one on one. even though there still is a way to go, he advances today are so much better can she could enjoy I weep for her when I think of what she endured. I hope science finds a medical way to restore hearing. Maybe for my grandchildren, although science doesn’t seem to be in a hurry and meanwhile some of my family members are losing hearing too.Is there any group that is trying to get more done medically to help us?
Thank you for sharing your experiences with hearing loss. Many scientists are working on restoring hearing, but it is slow going. You can read more at Stanford’s Initiative to Cure Hearing Loss. https://hearinglosscure.stanford.edu/