When Your Hearing Loss Self-Advocacy is Viewed Negatively

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HHTM
February 14, 2021

Sometimes hearing loss can feel like a no-win situation. If you don’t self-advocate, you will be left out of the conversation. But when you do, your self-advocacy behaviors are met with resistance, or worse — contempt. This happened to a hearing loss friend of mine recently. She did all the right things to handle her hearing loss in the workplace — she arrived early to meetings and rearranged the seating arrangement so she could hear her best — but in her year-end review, she was labeled as too controlling.

The same thing can sometimes happen when we request accommodations for a webinar or in a public space. In many cases, we are entitled to them under the Americans with Disabilities Act, but the organizers may not understand their responsibility to make their activities accessible to all. They may react with annoyance or worse, decline your requests for assistance.

Despite resistance, our self-advocacy efforts cannot be deterred.

 

How to Combat Resistance to Self- Advocacy

 

How do we continue to advocate for ourselves in the face of resistance? 

1. Share your struggles

Even if you have mentioned your hearing loss to people many times, they may not truly understand the struggles that you face. Hearing loss is difficult to understand unless you have experienced it. Tell them specifics about your hearing loss, including the frustration and sadness you feel when it makes it harder for you to do the things that are important to you. When you share your vulnerability, it is often met with empathy and a greater willingness to help.

2. Get them on your side

Make your success, their success. If you can get your boss/friend/whoever you need to assist you as a co-advocate, your chances of success rise. Explain why the meeting or event is important to you and how the changes that you are requesting will enhance your ability to participate. Ask for their help in creating an environment where you can shine. Appeal to their desire — especially if it is your boss — for you to be able to do your best work. When you transform a skeptic into a co-advocate, they will no longer be working against you. Any successes you have, will reflect positively on them as well.

3. Express gratitude

When you ask someone to swap seats at a meeting or to provide captions on a webinar, sincerely thank them for their help. Giving them credit for the “good behavior” will incentivize them to assist you again in the future. This should be easy, since you probably are genuinely grateful for the assistance, especially when it is done with a smile. Pro tip: Make your requests with your own smile and a positive attitude. Both are hard to resist.

4. Use humor

Humor can lighten the mood, reduce tension, and prod people to do the right thing. When entering the meeting, you can announce, “The deaf one is here, please make way,” or something similar that fits with your personality and the setting.

Most Importantly, Don’t Stop Advocating

Sometimes doing the right thing for ourselves or others is not popular, but even if others cannot see our self-advocacy for what it is — self-preservation — we must persist. If you have trouble rousing the courage to advocate for yourself, imagine that it is your child or best friend that needs the help and think about what you would do to assist them. Then take these steps for yourself. We deserve to be part of the conversation.

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Shari Eberts is a hearing health advocate, writer, and avid Bikram yogi. She is the founder of Living With Hearing Loss, a blog and online community for people living with hearing loss and tinnitus. She also serves on the Board of Trustees of Hearing Loss Association of AmericaShari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues. Connect with Shari: BlogFacebookLinkedInTwitter.

  1. Life long of trying it’s too frustrating given up. Your article is addressed to deaf people who work also.
    You can only do so much self advocacy. The majority of Hearing people simply do not get. Welcome to the real world of the majority of us and you I am sorry are a minority person o the one of us.

  2. I agree with the previous commenter: self-advocacy is pretty useless, so I don’t even try, except in phone situations where it is absolutely essential that I understand what the other person is saying — and then I frequently encounter incredible nastiness and rudeness! I have been screamed at on the phone by rude CSR’s, and I have had other people tell me that I need to be wearing hearing aids! So with that background in mind, in social situations, where it is not absolutely imperative for me to understand what someone is saying, I just do what most other hearing impaired people do: I nod, and I smile, and I fake!

    Let me share with you an experience I had several years ago in a Christian church ladies’ book study. There were about 10 of us sitting around a large square table (several banquet sized tables pushed together to form a large square). Everybody seated around the table was talking in hushed, whispery tones of voice, so it was next to impossible for a hearing-disabled person to understand what was being said. At the very first meeting, the lady sitting across from me told the group that she had a hearing disability, and she asked everyone to please speak up so that she could understand what was being said. And everybody did speak up —- for about 5 minutes or so. And then they were all back to whispering again. That lady never came back (there were about 8 weekly meetings for this book study) — and I totally understand why.

    At the end of the first meeting, I tried telling the group facilitator about my own hearing disability, and in subsequent meetings, she made sure that I was seated beside her, so I could understand what she was saying, but not anyone else, except for the person seated on the other side of me. My point is this: if we cannot get kindness and consideration from Christian church ladies, you can bet we aren’t going to get it from anyone else either.

    Self-advocacy is just a pointless waste of time and energy!

  3. I agree with above comment; perfect example, yesterday I went to a dr. appt, we kept misunderstanding each other, he wouldn’t take the mask off and me either. I have a sticky note on my mask: that says: I am hard of hearing please be patient. at the beginning of the assessment i reminded him. He kept loosing his cool with me; imagine how I felt! I kept reminding him several times of my hearing, at the end we were both exhausted.
    He referred me to another dr- for a neuro phys assessment, and wrote on the Rx: schedule after new hearing aids!!!
    I have the proof! He did not give me the Rx , he gave it to the front office to give to me.
    Isnt this discrimination? or what would you call it?

    Frustrated but not giving up!
    Thanks for listening! Have a beautiful day.
    Joann

  4. Dual sensory deficits are not easily explained. Advocacy takes a mental and emotional toll and the deficits alone are already debilitating. This is beyond challenging and more resources are needed (working with HOAs is a nightmare). Providers who do not understand deafblindness cannot support and validate requests. New to ANA and I hope to find more support with this matter.

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