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.

This month, the HOPE team and participants talked about hearing aids with artificial intelligence, assistive listening systems that don’t work, caption glasses that DO work, and more.

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

Ready for a Cochlear Implant: Which Brand is Best?

One participant shared that he’s ready for a cochlear implant and asked if anyone had experience with Advanced Bionics. Another participant said that Advanced Bionics’ sister relationship with Phonak was an advantage, as Phonak is outstanding on connectivity options. Participants discussed bimodal solutions – one CI and one hearing aid – and how important it is to have those devices synced so you don’t hear out of only one side of your head.

Caption Glasses in Action: Yes, They Work!

One participant shared that she used caption glasses at an event, and they worked well, but it was still exhausting. It’s somewhat challenging to figure out where to look, how to get the transcription in the right place, and how to track conversations. But the participant was very happy that she could understand speech and be connected to the world.

Hearing Aids with AI?

A participant shared her positive experience with Phonak Sphere Infino hearing aids, which have an AI deep learning chip to help you hear in background noise. She’s also using the Lace AI Pro auditory training app to train her brain to hear in background noise. The Sphere Infinio hearing aids don’t come with a telecoil, so you can’t connect them wirelessly to hearing loop assistive listening systems; they are supposedly “Auracast ready,” however.

When Public Assistive Listening Systems Don’t Work

Three different assistive listening systems failed to work for one participant at an event at Hill Auditorium. She was told that the systems only worked in certain parts of the auditorium–but she wasn’t told where she should sit in order to use the systems. Another participant agreed that accessing assistive listening systems can require some steps, such as calling the venue to get tickets in the right place so you can hear or read captions, or both. Sometimes even with a neckloop, the signal isn’t strong enough. The burden shouldn’t be on people with hearing loss to speak up and to figure all this out, but it often is.

People with hearing loss can file complaints in these situations. It’s up to venues to make sure hearing assistance works--otherwise, it doesn’t qualify as hearing assistance.

When You Say You Have Hearing Loss But People Keep Talking Anyway

Sometimes, even when we tell people we have a hearing loss and can’t understand, they keep talking anyway. It’s kind of humorous, but also frustrating. It can be hard for people to understand hearing loss and the challenges that come with it if they haven’t experienced it themselves. When this happens, one option is to repeat, “I can’t hear you, I can’t hear you.”

At a doctor appointment, one participant experienced this and followed up with an email to her doctor, explaining that hearing accommodations are required. To help with medical appointments, a couple of participants take their smartphones, which have captioning–this helps a lot.

Note: This is our last HOPE meeting until September 2025. We encourage you to have a wonderful summer and join us at our annual picnic on July 12, 2025.

This month, the HOPE team and participants talked about self-advocacy in various settings, feeling isolated in groups, adapting to cochlear implants, and more.

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

Self-Advocacy When You Have a Hearing Loss

One participant shared that even though she’s a “veteran” of dealing with her hearing loss, it’s still sometimes hard for her to ask for help hearing, even from a close friend. During a recent incident, this participant did eventually ask for help hearing her friend–and her friend was happy to solve the problem. One participant mentioned that others may not be motivated by ill intent–they may not want to hurt our feelings, and they may be afraid of saying or doing something wrong.

Other participants agreed that asking for clearer audio, requesting that someone repeat themselves, and so on can take an emotional toll, causing anxiety. Feeling left out and excluded is a very human experience. But participants reminded one another it’s not only OK to advocate for ourselves, it’s necessary. We are worthy of being able to hear!

An A-Z Guide to Hearing Loss

A comprehensive, updated guide to all things hearing loss is now available on our website. If you have suggestions the guide, let us know.

Adjusting to Cochlear Implants

One participant had her cochlear implant a few months ago, and now she’s having some facial twitching. Her audiologist is working to find the right setting–one setting reduced twitching but also reduced hearing.

Participants shared that it sometimes it takes a long time to adjust and adapt to a cochlear implant. At first, speech may sound like claps or robots. Other participants mentioned experiencing physical discomfort and some emotional strain. Sometimes people around us expect us to be able to hear perfectly immediately, but it takes time.

Some ways to help yourself adjust to a cochlear implant: listening to audiobooks, TED talks, or podcasts. Auditory training programs such as Angel Sounds or LACE can be a big help. We can also celebrate our small milestones and victories.

Hearing Loss Discrimination in the Workplace

A participant mentioned that they had been terminated after a supervisor repeatedly spoke softly and indirectly. The participant suspected that this was a hearing “test.” The participant was given unemployment insurance.

Other participants stressed the need to advocate for yourself in the workplace, while acknowledging that some people are just hard to deal with. This process of self-advocacy can take a long time, but it’s worth it.

Note: This is our last HOPE meeting until September 2025. We encourage you to have a wonderful summer and join us at our annual picnic on July 12.