SayWhatClub

The ADA and its importance to those with hearing loss

Thirty years ago, on July 26, 1990, the American with Disabilities Act (ADA) was signed into law by President George H. W. Bush. This groundbreaking legislation prohibits discrimination based on disability.

The ADA is important to me because I have a profound hearing loss. I started to lose my hearing when I was 19. Today, at 70, I am grateful for my cochlear implants which gives me close to normal hearing.

When Congress began drafting a law to define people with disabilities as a protected class, hearing loss was not mentioned, probably because it’s invisible. The only concession was for the Deaf, easily recognizable because of their use of American Sign Language (ASL). Hearing loss was finally included in the ADA thanks to the advocacy work of Rocky Stone and his newly formed organization, Self Help for the Hard of Hearing (SHHH), and Senator Tom Harkin who was a passionate advocate for it.

This inclusion is important because it affects 48 million Americans, a number projected to grow “thanks” to loud music played through headphones; returning vets exposed to heavy artillery; the aging population; and the noisy environment of cities. Hearing aids help, but they’re expensive and rarely covered by insurance, except for those covered by the Veterans Administration.

During my 35-year sales career, although I already used hearing aids, I had trouble hearing. Meetings were challenging and I struggled to hear on the phone in our noisy office. Had I only had the confidence to ask for accommodations I could have asked for CART (Communication Access Realtime Translation or live captions) for meetings, access to a vacant room for phone calls, captioned phones, and assistive listening devices.

Unfortunately, I did not. I was embarrassed, even humiliated by my hearing loss and tried to hide my hearing aids. I bluffed my way through conversations and meetings, creating misunderstandings, frustrations, and an impact on my career.

Ten years ago, I found the HLAA, and met others with hearing loss. I learned that my peers bluff if they cannot hear rather than admit they have a hearing loss. This was a life-changing insight for me as I thought I was the only one who pretended. And as I know all too well, bluffing can cause many embarrassing answers.

The HLAA, and accepting my hearing loss, have led me to start an HLAA chapter and serve as its president, become president of the international, online organization, SayWhatClub (www.saywhatclub.org). I launched a coaching
practice for those with hearing loss, helping them come to terms with their disability; also their communication partners as they are affected too. In addition, I give workshops and talks, all to educate people on hearing loss.

The ADA has had a major impact on my life, and on yours too if you choose to use it. It is not a watchdog agency. It is the law. Thanks to that law, we have accessible sidewalks, ramps, and elevators benefiting the wheelchair-bound and
others with difficulties negotiating stairs and curbs. More and more theaters and other venues provide CART and hearing loops. The ADA makes it illegal to discriminate against individuals with disabilities. You cannot be fired just because
you use a wheelchair or are hearing challenged. If your performing-arts center, conference room in city hall, or other public venue does not provide accommodations, like CART or hearing loops, you can ask for it.

Thankfully today there are a host of accommodations for hearing loss: captions on TVs, movies and smart devices as well as theaters providing CART, hearing loops in public venues integrating sound directly to the hearing aid. Telephones are hearing aid compatible. Captioned phones are free. Plus, smart phones provide a host of voice to text Apps.

There are still  shortcomings, but those shortcomings might encourage us to advocate for ourselves. As I mentioned the ADA is a law, not a watchdog agency, so we must be the watchdogs. We must ask for accommodations when needed, and the law backs us up much of the time. If we go to a public venue, it is our job to ask for accommodations, always allowing lead-time to comply. It’s not easy. You have to persevere, even in the face of rejection. But the ADA provides the legal groundwork to file complaints and take legal action.

Hearing loss doesn’t just affect your ears. It affects your self-esteem, social life, career and relationships with family, friends, and co-workers. Dealing with it requires courage and the willingness to stand up for yourself. We are fortunate to have the ADA to support us.

Pat Dobbs and the 2019 SayWhatClub Convention, Photo by Andre Binns.

Pat Dobbs, President of SayWhatClub, is the founder of Hearing Loss Evolution (www.hearinglossevolution.com), providing training and coaching services for people with hearing loss and their communication partners. Through this, she created the “Nine Guding Principles” to hlep all who suffer from hear loss. She is passionate about educating and empowering people about hearing loss and helps through work as an Educator, Speaker, and Coach. Ms. Dobbs started losing her hearing when she was 20 years old and her hearing progressively declined thereafter leading to her current status as a wearer of bilateral cochlear implants that allow her to hear close to normal. You can reach her at Pat@CoachDobbs.com.

Article is reprinted from Island Ad-Vantages; Serving Stonington, Deer Isle and Ilse au Haut, ME; August 6, 2020. Publisher & Editor: R. Nathaniel W. Barrows.

Hearing for Two

by Claudia Sanders

 

When my hearing friend talked about her challenges living with her hearing loss husband, I encouraged her to share her feelings. After all, hearing loss is a communication disorder and affects both the person with hearing loss and the person they talk with. What follows is a result of our conversations.

Normal Hearing

I have normal hearing. My husband, on the other hand, has significant hearing loss. While it’s obvious that there’s an impact on the life of a person with hearing loss, there’s also an unrecognized impact on the partner with good hearing.
I’ve considered writing about this impact for some time but have been reluctant for fear of sounding selfish or appearing to paint myself as a victim. The last thing I want is for any person with hearing loss to think that their partner feels they are burden. I do think it’s important, though, to acknowledge that hearing loss not only affects a couple’s communication, but that it also affects them individually. Understanding the impact can lead to effective and creative strategies to reduce frustration for both parties.

Hearing for Two

I realized that I was hearing for two when, I became aware that I was usually on “high alert” when I was out with my husband. Successful strategies help at home. However, whether at a store, doctor’s office, social gathering, restaurant, museum, checking in at an airport or one of the many other places where hearing is important or critical, I am always poised to intervene and help him know what is being said, or asked of him. There are times when I feel the need to tell a friend or stranger, “He didn’t hear you” because of their puzzled look when he doesn’t respond or appears to ignore them.

Communication

The research I’ve done on the effect of hearing loss on the hearing partner has turned up little. Most articles provide tips for the spouse with normal hearing on how to communicate with their partners. The focus, and rightfully so, is on how frustrating and exhausting it is to have hearing loss. The articles also say how one’s partner can help by communicating clearly. What usually isn’t mentioned, though, is how exhausting it is to hear for two. It’s hard to relax knowing that your partner may be missing important information or that he or she is not feeling included in a social situation. The impulse to step in and help is always there and it’s hard to know when to intervene or wait to be asked.

One of the main challenges for both parties is managing the guilt felt by each. The partner with hearing loss doesn’t want to be a burden or too reliant on the hearing spouse. He or she is reluctant to ask for things to be repeated or interpreted and the hearing spouse feels guilty for the occasional feelings of frustration. Open, caring, honest conversations on the most effective way to navigate hearing loss together, can provide insight into what each person is feeling and experiencing and help find solutions to reduce frustration.

Claudia Sanders worked as a job developer and vocational rehabilitation counselor in a non-profit agency helping people with disabilities and barriers obtain and maintain employment. She currently has a part time business as a professional organizer and is a hospice volunteer in her free time.

Difficult Situations: What to do? How to cope?

by Pat Dobbs

Over the years, I’ve received several requests for help when people with hearing loss are frustrated dealing with difficult situations.

Do any of the following situations sound familiar to you in Difficult situations?

Lunch

1. I go out to lunch with eight friends of more than 30 years quite frequently. I always arrive early so I can get the best table and choice seat and, if necessary, ask to have the music turned down. My friends know I have a hearing loss; it helps if they look at me when they talk and speak one at a time. They are also familiar with my microphone, which transfers their voices directly to my ears when they talk into it. Within a very short time, they seem to forget everything and I’m left out of the conversation, except maybe with the person next to me.

At first I try to follow the conversations, but it becomes mumbo jumbo and I eventually tune out. I go for an extended visit to the ladies room to rest. But really, how many times must I remind them? How long can I keep smiling? Sometimes I just want to scream at the top of my lungs and wonder if I should stop going altogether?

Family

2. It’s family get-together time and I know exactly what that means….trouble hearing. Everyone is talking at the same time, music is blaring, people are laughing….Yes, I can ask them to turn down the music, have conversations with one or two people in a quiet spot, or perhaps use my assistive listening device, but I am still left out of the fun of being with the group and taking part in their conversation. As much as I enjoy the one-on-one conversations, I still miss the group fun and end up feeling sorry for myself.

Appointments

3. I was at the doctor’s office waiting to be called in and, as I sat close to the receptionist, I spoke to her about my hearing loss. Wanting to be discreet, I asked her to get me if I didn’t hear her. As luck would have it, she had to leave the office and a different receptionist took over. She didn’t know my needs and I missed her calling my name. I probably should have written a note explaining that I may not be able to hear them call my name, but it’s impossible to anticipate every situation. My doctor, bless him, does know to look at me when he talks and he has a PocketTalker, which helps immensely.

Assumptions

4. It came to my attention that I’m considered a snob because I don’t respond when people call me. Of course I explained why I haven’t responded, but their assumptions and accusation hurt.

Difficult Situations
It can be hard to cope with hearing loss, but strategies can allow a sufferer to enjoy the life they’ve always lived.

Do any of these strategies work in difficult situations?

All the strategies these people used are excellent, but they don’t always work and we can end up feeling left out. If/when that happens, all the negative stereotypes of hearing loss, like feeling inadequate, less of a “real” person, unintelligent, defective, snobbish, etc., rears their ugly heads.

When those situations happen to me, I admit I often go to a bad place. I allow myself a set amount of time to feel sorry for myself. It may be 5 minutes, an hour or a day. But after that amount of time I have to drop my victim mentality and go to a positive place. The Nine Guiding Principles help with this.

Here are a few things that help me in difficult situations:

  1.  I keep a personal inventory of the things I excel in and give to the world. I know, when you’re feeling low it’s hard to think of anything good about yourself. If necessary, ask a friend to help you create a list of your unique strengths and keep the list with you on your cell phone or in your wallet so it is handy for those times in need.
  2.  I never compare myself to others; that only makes me feel bad. Rather I remind myself I’m a unique individuel with unique talents. As an example, most people hear better than I do. But because I must pay close attention to what people are saying to lip-read, I give them my undivided attention making them feel completely heard. Being completely heard is one of the best gifts we can give.
  3.  I refer to the Nine Guiding Principles of the Hearing Loss Evolution. These principles help me regain my sense of self-worth and self-love as it provides a practical guide for living with hearing loss.
  4.  I often speak to a friend, especially those with hearing loss as they’ve all been in similar situations and understand.
  5. You can seek a professional counselor or go to a religious counselor. Meditation can be helpful, too.

Bottom line:

We must internalize that our hearing loss does not define us negatively. Although it’s a part of who we are, how we live our lives define us, not our hearing loss. It is not easy to change our perspective, but it is an achievable goal, one that is important for us to live a full filled life.

How do you deal with similar difficult situations?

Pat Dobbs is an advocate for people with hearing loss and writes a blog on www.HearingLossEvolution.com. She is proud to be President of the SayWhatClub