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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.

Live, Love, Learn and Leave, if You Need!

Ah, beloved – it’s been eight weeks, since I wrote my first article about certain effects of mask-wearing on communication with the hard of hearing; time to log some more ideas and experiences.

All praise and glory to God for healing and protection during this time as ever; prayers for the world (leaders and regular folks), and realization of our need to turn back to God. May we be humble and repentant in these days.

Shout out to essential workers (this includes everyone, even those not “working”), former CDC colleagues (whom I’m not ripping every time I post something related to its’ institutional failures), my new and old buds at EPA, and beloved with hearing loss and other disabilities. I’m thankful for you all.

Thankful I could contribute to my country’s work in the professional realm too. A CDC friend reached out to me in April, because s/he knew CDC’s renowned hearing loss communications expert (me!) had only recently left to seek better working conditions. S/he knew who to call, so I gave my “free” expertise to inform CDC’s phone contact tracing, considering people with hearing loss, Deaf, and late deafened, and various communication possibilities (paid for by my trials, but glad to finally be effective for my tribe!).

We have to LIVE during this pandemic, so I’ve gone about my business, practicing the safety and health principles I know and seeking to learn and share knowledge. I’ve traveled safely and with purpose and sought to keep my own health paramount. That old adage: “put on your mask first, before putting one on another” is something to take to heart in every situation, not just when flying or in a pandemic.

Also, living among multitudes of masked others, I’ve had to pray daily for more grace, patience, and love – both to give and receive. Say and DO Shema! Love the Lord Your God… and neighbor as self, Ange!

So thankful for these people, because they helped me learn – and teach them, for those who’d listen long enough for a nugget of communication improvement we might use in the future or with another:

–        For a postal worker’s kind rescue from a fearful coworker’s refusal to write down instructions, as well as rescue from the scene created by the fearful coworker’s “able-ist” reactions to my need. All I wanted to do was get my mail off, not gain ADA/Rehab Act lawsuit fodder that day. Also, I’m thankful for the “fearful” postal worker creating the opportunity to know she needs prayer!

–        For the young lady at REI who re-rung my order to attach to my membership number, graciously receiving my gentle feedback that next time, she should ensure the hard of hearing customer understands her questions (such as, for my member number, which she asked once, but I missed, and that would not have given me credit for the purchase under my membership).

–        For many who realize they can safely stand 6 or 10 feet away (outside or when other barriers are present) and pull down their mask for a moment to let me lipread them. (That’s the range of a hearing aid – 6 to 10 feet – but we who wear them, and the kind people who “get it” know that a hearing aid has so much more power when a user’s eyes are focused on faces and lips.)

–        For another young lady named Katie (mom’s name!) at a business, who learned a bit about hard of hearing mask-readers after I called her Kayla and she’d assured me that I could hear her… Getting her name wrong was the clincher! I helped her realize how disrespectful she was by challenging me, and asked her to do better by giving the next customer the benefit of doubt.

–        For a security guard who reminded me to respond faster to “attitudes” behind masks, especially when mask-owner is armed. (I stayed outside a farmer’s market at closing, drinking my $1-decaf as I’d done another day, but this guard had a different attitude than the other… with his soft voice, I tried to hear him (as I thought he was asking about my welfare), until he yelled, “Leave!”

–        For a Sport Clips hair stylist who cut my hair after 5 months (a pandemic-in-its-own-right), using Ava (ava.me), my trusty speech-to-text app, so we could communicate behind our masks. Here’s me and my new “do” thanks to her. (Note: I asked for a socially-distanced photo; she declined.) Nonetheless, I was happy I could actually stand looking in the mirror at myself to take this selfie!

So there you have it; lessons, love, and learning, and a bit of leaving, when necessary. Love each other peeps, regardless of our ideologies, shades of skin, cultures, abilities and/or any absences thereof. We will embrace and shake and hold each other’s hands when this thing is over or when each individual is ready. In the meantime, fight institutional and social injustice. Use your voice to speak out against it. Just don’t do violence.

Angie (Fugo) Fuoco

for Blog Post
Sometimes, it is just too hard to understand what is being said around us. Be kind to yourself; those who love you will understand.
The views and opinions expressed by the author does not necessarily represent the views of the SayWhatclub administrators and/or subscribers, and are provided solely for informational and educational purposes.  The SayWhatclub is not responsible and does not verify for accuracy any of the information provided.”

Hope

Photograph taken by Gail Solomon
Angie receives blood while using AVA on her phone to transcribe the phlebotomist’s comments. Photograph taken by Gail Solomon

I Don’t Speak Mask (or Mock); I Speak HOPE.

As hearing loss advocate, I couldn’t stay silent about pandemic-inspired masks. But I’m a procrastinator. I’m glad I waited to write about them until today, as I was vividly reminded of the underlying problem.

Masks on the Masses

Our world has never been so “masked-up.” Deaf and hard of hearing people knew masks would bring communication problems, as we’ve dealt with past surgeries and dental procedures that require masks. We automatically lipread, some of us without realizing it. We read expressions and gestures to help us understand what others say. We guess a lot and miss a lot. We have experience, just not on this scale.

As a safety professional, I’m fearful for the safety issues that might arise because of misread and feigned understandings of safety communications made verbally under masks, in high-noise environments; in heightened stresses and fears of the pandemic; in the societal unrest and upheaval we’re experiencing as a result of racism. That’s another article, or more. So are discussions about health, mask efficacy, when to wear or not to wear, individual rights, personal responsibility to yourself and loved ones, etc.

The issue I’m concerned with is how we treat each other while relating, or retreating, behind the masks.

Power in My Purse

I faced my own fears at my first masked-up blood donation. I arrived early at the cross-town synagogue where the blood drive was to be held. Seeing no activity, cars, or Bloodmobile, I checked my email again, realizing that because of the pandemic, the location had been changed from the synagogue to the Red Cross facility nearer to my home. So now I’d be late and encounter hearing struggles! I drove like a banshee to the correct location and wondered if my blood pressure would be too high to donate.

I met the first volunteer at the door, telling him I was hard of hearing and wouldn’t hear well inside. He told me he was a veteran with PTSD. Understanding the tempo of those letters as he spoke them, I thanked him for his service and for sharing that with me. His resonance and candor calmed me.

A room-full of volunteers was another story. At a reception table, synagogue members (I later learned) were thrilled that a non-synagogue member showed up. By this time, I was cranky due to my lateness, dazed by moving masks, and desperate to hear the person talking to me over a constant murmur I could but didn’t want, to hear. Synagogue members helped me figure out a check-in process on my cell phone. A Red Cross employee let me answer questions onscreen. I wasn’t as patient as I could’ve been; despite this fact, my blood pressure was fine. But it seemed to rise as I turned toward the donation chair.

You see, I routinely give blood from my left arm (my deaf side), where a bold vein screams “prick me!” to any phlebotomist in earshot. So, I envisioned the next struggle – a blood collecting process minus lips. Thankfully, a few minutes into pint-giving, I realized the power in my purse. Grabbing it with my free right arm, I pulled out my phone with the Ava speech-to-text app loaded on it. As I began speaking into the phone, my attending blood collector came over. I showed him my words now appearing onscreen and asked him to speak his directions into the phone. His words appeared too. We were both jazzed.

After my donation, I shared Ava with the reception table volunteers and apologized for my previous impatience. They were more than gracious and asked if I’d like to be invited to their next blood drive eight weeks later, which hopefully, will be at their synagogue. “I’d be delighted!” Ava and I replied.

The Power in Me

“There’s an app for that!” we always say. So yes, there’s an app or several (Connect-Hear.com); there’s also good old-fashioned paper and pen, or blackboard and chalk, or white board and marker. The most meaningful solution for me though, is to control my anxiety and realize my inner power – when I can – to take charge of situations and use the tools I have at hand and in me to make them always-positive ones.

At my next appointment, a bevy of health care workers hovered near the entrance to a medical building. Masks began to move as I crossed the threshold. This time, I was in a good mood, announcing as soon as I pulled in close, “Wait! I don’t speak mask!” They all burst out laughing, with one warning she needed to take my temperature as she brought a thermometer to my forehead. I guessed that she also asked if I knew where I was going; so quickly, I made a funny, yet not crude, gesture informing them I’d come in for a mammogram. Laughter is always a good solution. And it makes everyone’s burdens a little lighter.

A No-Mask Mock

I expected mocking from masked hearing people. Sadly, in the health field where I work and serve, I’ve experienced mocking from health care and public health professionals. But tittering, nervous laughs from people who don’t know what to do to help me were the most I’d gotten in the past few months – – until today.

Today, the mask-less neighbor of a friend drove up to us as we returned from a walk. I met this neighbor a few years ago and hadn’t seen him since. When he stopped, he waved his arms in mocking gestures at me. It seemed he only remembered my partial deafness, instead of anything else important about me. I wasn’t shocked, since I knew of this neighbor’s coarseness. A bit rattled with PTSD rising in me, I locked eyes with his, a “Why?” in mine, and walked silently past. Later, in his kitchen, my friend reported to me that after I walked by he asked his neighbor how he thought any person who couldn’t hear would feel if they were treated that way. He told me his neighbor just stared back at him blankly, wordlessly.

Real Problem; Right Language

It seems the real problem is fear in all of us in this brave new multi-masked world: fear of what to do and what to say, as well as our own insecurities hurled at each other in hurtful ways. Masks, and fears, are easy to hide behind. Even mockers are insecure, else they wouldn’t resort to such boorish behaviors.

So, to me, the right language to speak (or sign, for those who don’t speak) is always: HOPE

Help me help you! is Tom Cruise’s plea in Jerry McGuire. Help each other the way they ask you to do so.

Other = Focus on the Other, whether you are the Deaf or hard of hearing person, or the hearing person.

Prepare: Be prepared with your words. Be prepared with your solutions; be willing to use the other’s.

Empathy: Let everything be done with empathy, especially your responses. Even for boorish neighbors.

Issues such as racism are complex and deep-rooted. Yet, in simple terms, they’re based on sight, judging others by skin color or a blood line. If all of us were blind, would these issues exist? What if we were all Deaf? What if all of us used a visual language instead of a spoken one? Throughout history, people have found ways to discriminate against each other based on perceived differences. As with racism, we can easily treat others with disrespect and judgment based on hearing or lack thereof. Masked or not, in a pandemic or not, seeing, hearing, or neither: choose to help; focus on the other’s communication needs; be prepared for interactions; and be empathetic. Speak HOPE! Be another’s help and each other’s hope.

About me: Angie (Fugo) Fuoco is the local chair for the Say What Club 2020, now 2021 convention. She has worked in federal government for more than 33 years in a variety of roles. In March, she joined the EPA’s San Francisco Office of Community Involvement and has since been busy making sure the agency’s engagement activities include people with disabilities, and those of us with hearing loss. She’s excited to host our 2021 Convention next year in Pittsburgh, hopefully without masks!