Sound Advice By Ruth Bernstein
Since the pandemic began, I have participated in many online events. I have asked for and been given captions, mostly as ASR—computer generated speech recognition. Sometimes I’m lucky and get CART—a live operator who uses Communication Access Real-Time Translation.
I recently received a request to participate in a study about hearing access from an out-of-state audiologist. The announcement did not say captions would be available, so I asked if they would be. The answer came back no. No? What do you mean no? People with hearing loss are being asked to participate in a program that isn’t accessible. That is unbelievable! Needless to say, I was upset, because the program was arranged by someone who knows better.
After I calmed down, I realized that members of the hearing loss community need to do a better job of asking for access whenever they need it. We have to work harder to make our voices heard so we can reach the point where hearing access is automatically included in all programs, whenever and wherever they are presented.
Advocacy Lessons Learned
In May, 2017, I wrote the following blog post about how to accomplish this and was surprised to discover my suggestions then are still useful today.
Lesson One - Coping with hearing loss is a 24/7/365 business. It is an integral part of life. I’ve chosen to make advocacy one of the priorities in my life because I have been very lucky and had constructive, compassionate help from the professionals I’ve dealt with. I want to return that help and compassion to others. I also discovered, along the way, I’m a bit of a ham and like sharing my ideas with an audience.
Lesson Two - Asking for what we need in detail, in writing and in advance is useful, e.g., asking for CART, an assistive listening system, a seat that gives a good view of the speakers or stage, a hotel room that is wired with alerting devices. These requests allow us to participate in activities we might not have been able to enjoy otherwise. They also encourage people with hearing loss who don’t know about these accommodations to learn about them.
Lesson Three – Explaining why we need accommodations educates the people we deal with. It puts a human face on the problems people with hearing loss encounter. I’m always pleased to hear “Thank you. I learned a lot from you.” Sharing resources and making referrals to your network can be helpful in solving a particular situation.
Lesson Four – Having a sense of humor is a big asset in dealing with the frustrations of hearing loss. At a job interview, the batteries in my hearing aids went dead. Very calmly, I looked at the interviewer and said, “The number you have reached is temporarily disconnected. I have to change the batteries in my hearing aids.” The look of astonishment on her face was wonderful. I had not told her I had a hearing loss when I went into the interview! My other favorite line is “Don’t speak until you can see the whites of my eyes.” It is much more effective than saying “Please face me when you speak.”
Lesson Five – Saying “please” and “thank you” are invaluable tools in smoothing the way to requests that, for one reason or another, may be difficult to fulfill. Everyone wants to be treated with respect and appreciates having their efforts recognized.
Lesson Six – Look for win-win solutions to accessibility problems. You get the accommodation. The supplier gets more business, good PR and a grateful citizenry.
Lesson Seven – Getting angry accomplishes nothing!
Lesson Eight – Join organizations like the Hearing Loss Association of America (HLAA) so you can meet others who are dealing with the same problems you are—you are not alone!—and learn as much as you can about your hearing loss, hearing aids, cochlear implants, assistive devices and helpful coping techniques. CHC also has support groups for people with hearing loss.
Lesson Nine – Hearing loss is not a fatal disease. It is frustrating, annoying and difficult to cope with. Although recent research shows untreated hearing loss can affect your physical and mental health and your memory, there are a growing number of ways to address hearing loss through technology and counseling. Take advantage of them by coming to CHC and joining HLAA-NYC.
Lesson Ten – Hearing loss is an invisible disability. That’s why we can never assume access will be available. We need to ask for access all the time and make hearing loss visible! Join me and become an Ambassador for Hearing, explaining what you need and why you need it, how important it is to each of us and how grateful we are for the services we receive, even if they aren’t perfect. When we speak up, in addition to helping ourselves, we help improve the lives of a lot of other people who are grateful for our efforts!