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?