This month, the HOPE team and participants talked about caption glasses, volume challenges when we’re talking, self-advocacy, and more.

For more information on our free, online HOPE program to help people with hearing loss, visit our HOPE page.

Register directly for our October HOPE meeting here.

Hearing Access in Healthcare Settings

One participant shared experiences in the ER, then being admitted to the hospital this summer.

Fortunately, she remembered to bring her CI chargers. However, she didn’t have a hospital kit. She asked the nurse for a large piece of paper, where she wrote “I am hard of hearing, please face me when you speak. Speak slowly and clearly. I’m deaf at night when I charge my CI processors.” The nurse saw the sign and expressed appreciation, then made more copies, placing one by the window, one by the board, and one by the computer.

(You can get clear masks that allow for speech-reading here.)

How To Tell if Your Voice is Too Loud (or Soft)

A participant noted that sometimes her friends mention that her voice is too loud. Another person said she’s told she speaks too softly, perhaps overcompensating from being too loud in the past.

Are there ways to modulate your voice when you have a hearing loss?

Participants said they ask friends and family to give a hand-sign of sorts, like tugging on an ear, if they’re too loud or soft. For example, one says, “I sometimes talk too loud, but I don’t know it. Can you give me a sign if I am doing so?”

Another said she reminds herself that speech volume is a learning process, and she forgives herself and remembers to be patient. She apologizes if she’s too loud, but doesn’t beat herself up over it.

Cochlear Implants and MRIs

One participant who has cochlear implants had her scalp burned after receiving an MRI. Depending on the type of CI you have, you may need a different type of MRI machine in order to be safe. She needed a 1.5 model MRI machine, which on one occasion, was not used, and she was harmed–though she is OK now. They wrapped her head in order to keep the magnet from flipping, but she couldn’t hear anything when that happened, and she felt like a Civil War patient.

She said many people with CIs fear MRIs and have been told to not have them. Her research shows that in some cases, MRIs may be done safely if they’re done correctly. Other participants mentioned they were told they never could have an MRI once they got CIs.

Her experience has prompted her to become an advocate for others with hearing loss in healthcare settings.

Caption Glasses: Captify

A participant bought Captify caption glasses and says they work great when you’re looking at one person, like in conversation. The glasses caption both sides of the conversation. You have to switch your attention between faces and the captions. This attention-switching is easier than looking down or away at a tablet. Prescription lens compatibility is available. She’s wondering how the caption glasses will work during Thanksgiving, when there will be lots of competing voices.

More and more companies are interested in caption glasses, and several brands are currently available.

Hearing Access at a Hotel Event

One participant shared her experience with no hearing access at a 400-person event at a hotel. There was no assistive listening system. She used her caption glasses, which worked part of the time, but neither her glasses nor her hearing/hearing aid could pick up audience questions because there was no mic.

After the event, she introduced herself to the event planner. She explained to her that she often calls herself “Deaf” rather than “hard of hearing” because when she says “hard of hearing,” people tend to yell, which makes things worse. She asked the event planner whether she’d thought to provide disability accommodations, and the planner said no, no one had asked–but that she’d take it under consideration next time.

The participant said that several people at the event asked her about her caption glasses.

This story is good example of how advocating for ourselves means we advocate for others, too.

Self-Advocacy When You Have a Hearing Loss

The group talked about how important self-advocacy is. Asking for what we need and taking charge of ourselves are vital tasks for us to thrive. We need to remember that we matter, that we’re worth it.

When we ask for accommodations, we can ask kindly and assertively. The worst they can say is “no,” but we can give them a suggestion and even talk with a manager. We may have to ask again and again and again for what we need, because so much communication behavior is unconscious.