Defining our needs as a community of Hard of Hearing (HoH) people who use spoken and written language to communicate is a challenge due to the diversity of hearing loss.
As an individual, defining your own specific needs, depending where you fall on the hearing loss spectrum, is one of the most important things you will do. The earlier it happens, the better.
The Deaf Community is well-respected and admired for their accomplishments, and rightly so. They have fought long and hard for recognition of their language and culture. Deaf people influenced the passage of the ADA (Americans with Disabilities Act). Their culture, community, and communication needs are visible and well-known. For that reason, anyone with hearing loss is commonly lumped together with the Deaf, labeled as hearing impaired or people with hearing loss (pwhl), and assumed to communicate fluently in sign language.
However, the HoH have very different communication and accommodation needs. We might learn some form of sign language, but it is unrealistic to assume we are going to become fluent speakers and immerse ourselves in Deaf culture. A small percentage do make that choice, and that’s perfectly okay. However, most of us live, work and socialize in the Hearing Community. We communicate in our spoken and written language and need to see the text of that language for communication access.
And, contrary to what most believe, we are the majority of people with hearing loss.
Because HoH needs and accommodations seem to be a mystery to the world, a re-education is necessary, maybe even a movement of our own.
Chelle: After my last big drop in hearing, I lived in what I called No Man’s Land. I wasn’t hearing and I wasn’t Deaf. With that drop I was trying hard to find my way around again in the hearing world. The only time I felt like I belonged was in classes for a few hours a week offered by the state Deaf and Hard of Hearing center. Otherwise, I felt misunderstood in the hearing world and far, far away from anything Deaf.
For a long time, I thought only the hearing community misunderstood the HoH. After eight years of working side by side with the Deaf, I found they too misunderstood hearing loss and had nearly the same misconceptions as hearing people. An example, one Deaf person told me he thought we could hear, just not normally. He didn’t know about the different kinds of hearing loss and how they affect hearing speech. I found myself educating both communities.
Being the first Hard of Hearing Specialist for the division that wasn’t fluent in American Sign Language (ASL) had its challenges. In fact, I was probably one of the few in the country who wasn’t fluent. I remember attending a breakfast gathering with people from other state D/HoH agencies. It was nearly all ASL and I felt like a fish out of water. I felt exactly how I used to feel sitting among a group of hearing people in a noisy setting and not being able to follow anyone.
In the end, I served the HoH community well, representing them above all else. They were who I was hired to help. Ninety percent of the HoH (or more) do not know sign language nor will they. Instead of ASL interpreters, I requested CART everywhere I went. The more I used it, the more people experienced it. Businesses learned how to reserve it, audiences learned about the service, and I was able to fully participate. That was my job more than learning ASL.
Within the hearing world I’m constantly educating about HoH communication needs too. “I lipread,” does not mean “I use ASL,” I never said I use ASL. Listen to my words, “I use lipreading.” If I ask for CART, please don’t offer an ASL interpreter. See my words, “I need CART.” We need the general public to stop assuming and respect our requests. It’s like offering a French interpreter to someone who speaks Spanish. Stop, please.
Michele: Many of us struggle for years not knowing what we need. I was one of them.
Early on, I made it very easy for people to forget that I couldn’t hear by coping well and not focusing on my hearing loss. As a result, some family and friends, and even my employers, had no idea I had a hearing loss, let alone what I needed. Because I didn’t know myself.
I looked to the audiologists I saw during my 20s thru 40s—there were several due to frequent military moves and job changes—for hearing loss help. We tried hearing aids, each time hoping the latest advances in technology would give me better results than my last trial. When they didn’t, I went home feeling like a failure and thinking hearing aids were the only thing audiologists had to offer. No clue as to what else was available until the internet came along.
I had already begun the hard work of owning my hearing loss and educating myself by the time I found a peer support group. Finding others with the same challenges, who knew more than I did, accelerated my education and shored up my confidence. I began volunteering, and in searching for solutions for others, I helped myself more.
Becoming a part of an online hearing loss community gave me the same kind of connection that I imagine the Deaf find among others in their own community. I began to feel as if I was part of a HoH culture and took what I had learned to a new level by advocating for captioning as a consumer. I asked for what I needed in every situation with a barrier to access, each time gaining more awareness of HoH needs, and my own.
It became clear that the world could use some awareness of its own instead of assuming everyone with hearing loss was part of Deaf culture. Each time I requested CART for an event, I was offered a Sign Language Interpreter. I even showed up for a few medical appointments to find an interpreter waiting without having requested one.
I’ve seen many HoH enthusiastically attempt to learn sign language only to find they have no one to use it with. I have nothing against learning sign language, I wish someone would have taught me as a kid, but for most, it’s not an immediate solution when you find yourself no longer able to communicate. You need something that helps you communicate in the hearing world where you live, NOW, and that is captioning.
What really drove home the need to educate about HoH needs was my experience with my state CareerForce and Vocational Rehab offices while looking for a job. I was assigned a placement coordinator and was paired with someone who found it unacceptable that a person in his line of work had no idea what my needs as a HoH person were. I educated him during our time together, which led to his encouraging me to submit a workshop proposal for our county Health and Human Service conference to educate about needs of the HoH. Because if he had no idea about HoH needs, his coworkers probably didn’t either. That’s how the One Size Does Not Fit All workshop came about, and that’s why Hearing Loss LIVE! wants to partner with state agencies who serve the HoH.
Julia: As hearing friends, family members, coworkers, or employers it is not your responsibility or role to define HoH needs. Your role is to support the needs of people with hearing loss by doing the following:
- Attend your loved-one’s audiology appointments and/or hearing loss support group events with them, and LISTEN.
- ASK each person what they need. Effective accommodation looks different for each individual with hearing loss.
- Try a captioning App for one-on-one communication and/or virtual meetings.
Businesses also need to listen and honor accommodation requests for the HoH. I have spent years countering the stigma and misinformation associated with CART, and educating about it as an acceptable form of communication access.
Just like ASL and ESL interpretation for the Deaf and those learning English as a Second Language, CART is an acceptable and reasonable communication access accommodation.
The American with Disabilities Act guarantees your right to communication access. Captioning and CART are reasonable accommodations. There are three divisions (Titles) of the ADA that apply to employers, businesses, public schools, most community events, public transportation, your local television stations, telephone and cable companies. This means there are tax breaks and other compensations.
If you request CART and the response is “Will an ASL interpreter do?,” the entity knows they’re required to comply with the ADA, but might need educated about CART.
It’s up to the consumer to decide and request a reasonable solution for them. It may be CART for large conferences or training where you need the notes to perform and/or understand your job duties, or captioning devices at movie theaters, or a different accommodation for attending events at your local playhouse.
A SIMPLE FACT
An overwhelming majority of the 466 million (432 million adults and 34 million children) people with disabling hearing loss in the world are HoH and need to see spoken language in text for communication access.
We want to help the underserved HoH community define their needs. For themselves, their communication partners, and the general public. We want to spread awareness about our needs being different from those of Deaf culture. Not because we are competing with the Deaf, but to dispel the wrong assumption that everyone with hearing loss uses sign language. We want accommodations and services for the HoH to be as recognizable, and as widely available, as accommodations for the Deaf.
Look up the population of your own town or city; then calculate 20% of that number. Some will be part of Deaf culture and use sign language for communication. However, most will be HoH and have similar needs to your own or your loved-one. Think of how you might connect with other HoH in your area to create a network of like-minded people for in-person peer support and to forward initiatives that serve the needs of the HoH. Spread the word about CART and other accommodations for communication access.
It’s time we use our collective voice.