Hearing Loss and Self Advocacy

Self advocacy is taking responsibility for your own communication needs as a person with hearing loss by…

  • becoming self-aware and knowledgeable about your hearing loss and needs.
  • familiarizing yourself with the tools, technology, and accommodations available to you.
  • developing an ability to describe your needs to others.
  • learning the how, who, and when to ask for assistance.
It is never too early, or too late, to become a good self advocate.

Michele: For some of us, it takes far too long for the attitude shift required to self-advocate.

For me it was an exercise in unlearning a not-so-healthy degree of consideration for others at my own expense. Considering others with more visible disabilities caused me to apply some of the same thinking to myself—Haben Girma, the first Deafblind person to graduate from Harvard Law School, talking about becoming a strong self advocate in this TED Talk is a great example. I certainly don’t consider Haben’s need to have access to her colleges’ cafeteria menu (minutes 3:36 – 12:36) too much to ask, so why should I view asking for what I need for access as bothersome?

Accommodation is not a favor.

No exclusion is too trivial, and asking for what you need is not complaining.

As the world of self-advocacy opened up, I realized I had absolutely no clue about how to ask for what I needed. Having always loved science, it made sense to experiment. I started with the basic task of informing others that I had a hearing loss. Labeling myself didn’t net the results I wanted or the clarity that others needed. I gave up using labels and just said what was true: “I’m a lipreader and I need to see you speak in order to hear you.”

I decided taking control in situations that made me uncomfortable was the best strategy. On days when I was feeling confident, I purposely set up challenging situations to work out better solutions/reactions. I later learned that what I was doing was called exposure therapy.

Join a Hearing Loss Advocacy Group

Once I joined an online peer support group and connected with advocates like Lauren Storck of CCAC Captioning and John Waldo of Wash-CAP, I realized I was part of a Hard of Hearing community that rarely asks for what they need. John Waldo shared that one of his biggest frustrations was working to get captioning devices in movie theaters and very few people using them. I owned my responsibility to be informed and to ask for accommodations that others worked hard to put in place. Not only for myself, but for all of the 466 million people in the world with disabling hearing loss.

Captioning is my language. Consumer captioning advocacy has been my focus for over a decade now. I ask for captioning whenever and wherever I’m excluded. I’m fluent in English, speak and write in English, but I can’t access spoken English without accommodation. Captioning allows me to be included.

CART Advocacy
Hands hovering over a black steno machine. People sitting in a wide circle, can see their pant legs.
Julia’s steno machine

Julia: Advocating for others is easy. But, not so easy when it comes to ourselves. I recently was asked why more folks don’t become CART providers. What I wanted to reply was that the Hard of Hearing don’t request it regularly. Instead I talked about supply and demand which becomes difficult in the CART world, no demand no pay. Many people don’t know what CART is, which is another big problem. 

Employers don’t often know about CART or what accommodations to offer when a hearing loss individual asks (I can help with that.) I hear the same about public venues. Oftentimes, they have accommodations but employees aren’t aware of, or trained for, them. Or, they may only know one form of accommodation, “Oh yes! We can get you an American Sign Language interpreter.” Give them credit for knowing about Americans with Disabilities Act (ADA) but don’t cave. Think of it as an opportunity to educate on HoH communication needs. 

Request the Accommodation You Need

Request what works best for you. Don’t let the business or venue tell you what will work best for them. When you settle for less, you may not be able to truly participate and enjoy the experience. They have to accommodate your hearing loss needs also, they just don’t know how yet. 

HoH are good at advocating for others. Parents are good at advocating for their HoH kiddos. When you start advocating for yourself, you can help make large scale changes. It may change the way business looks at hearing loss. Let me give you an example: I lose my hearing and I have young kids, I spend time advocating for my rights at work and my kids see this. They grow up and end up losing their hearing. They will self advocate because it is the example they saw. And now maybe when they say, “I need a caption phone to continue working,” the employer knows exactly what that is. Now, future generations will find it is easier to self advocate and HOH accommodations are a given.

Friends and family members, yes I am a broken record. First talk with your hearing loss family member. What do they want you to help them with when it comes to advocating for themself? Learning all the tools that can be used can help you work together.

Julia providing CART at the SayWhatClub in Nashville, TN.
The Hard of Hearing are Meek

Chelle: My first official hearing loss convention was in 2012 held by the SayWhatClub, in Salt Lake City. John Waldo, an Americans with Disabilities Act (ADA) lawyer, led a workshop for us. He talked about what he was working on and what was coming up. During the  question and answer session, I remember John saying the Hard of Hearing tended to be a “meek” group so it was hard for him to get things done.

The word “meek” hit me like a ton of bricks. I think I’m one of the meek ones because I didn’t want to burden others with my communication needs. Did I want to stay meek? Hell no! If someone was going to work on legislation on my behalf, then I needed to step up.

I started with baby steps. First, I started with my family telling them what I needed for better communication. When that worked, I began advocating for myself in public with grocery store clerks, experimenting with introducing myself and what I needed for communication. I ventured to restaurants by myself to practice with waitresses, they are paid to be nice, right? When a server took extra effort to work with me, I gave them a nice tip. When I returned they remembered me and worked with me. I also started to ask for assistive listening devices (ALDs) whenever I was in a public venue. I ran into issues now and then, hopefully they learned as much as I did. 

My First Time Requesting CART

Then came my real challenge, asking for CART in a writers workshop, a place where I exhausted all other efforts. I could not participate fully due to bad acoustics and bleed-over noise from other rooms (the walls did not go all the way to the ceiling). There was some push and shove but in the end they had to comply. Julia wound up being the one to do the CART and for the first time, I could participate fully in the workshop answering questions, hearing the other students and even ‘hearing’ while the workshop leader who faced the white board often.

I took myself off the meek list.

This was not instant, it took a couple of years to build up. I borrowed courage from the hearing loss tribe and I’m not sure I could have done it without their help.

If you are having trouble figuring out how to begin with self advocacy, start with finding a peer-to-peer support group for people with hearing loss. Finding others who can share their successes and strategies is encouraging. Before long you’ll feel the boost in confidence needed take those first steps in asking for what you need. Start small and build from there, and remember…

  • unhealthy diffidence, timidity, and meekness can be unlearned.
  • experimentation and practice are invaluable.
  • taking control in situations you know are challenging is key.
  • the more HoH people use their voice to ask for, and educate others about, what they need to be included, the more the world will change.
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If you liked this post, try Caption Advocacy, Requesting CART. Practice in stores, HoHs Go Shopping.

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