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Yinz, Ya’ll, Eh? Say What Club Conventions

Posted on by swc-kward

Yinz, Ya’ll, Eh?  (aka: the ‘burgh’s plural you, the South’s plural you, and Canada’s every other word!)

Hey SWC-ers!  It’s been three years since our last blog post and three years of fantastic cons to reminisce about.  So, time for a new blog and a walk thru our most recent cons of the roaring back again ‘20s…

Aug 2020 – Year of the Non-Convention gets a brief mention since yours truly & the 2020 Con Committee tried our best to cobble a Con together up until the last minute, then had everything in place for 2021.

Aug 2021 – Pittsburgh, Yinz met here (Pittsburgher hosts, me and Joe Kovac + Pat Kovac and Lorne Smith)

Our 2021 reunion convention built many bridges among us and along three sparkling rivers surrounded by green hills, inclines, and the warm, welcoming people of Pittsburgh!  And refreshing it was, after two years of a “drought” of not seeing each other because of a cancelled 2020 (I most of the year, that is).  Many made excursions to the Andy Warhol Museum, the National Aviary, and more.  And our Gateway Clipper riverboat cruise was a feasting-dinner-dancing, one-of-a-kind experience where we descended and rose again on the Ohio River’s first set of locks.  We could have kept heading West into the glorious sunset and on to the Gulf of Mexico… but alas, our lovely host city beckoned us with a gorgeous nightfall illumination-fest.  Gliding back to Mon-On-Ga-He(y!)-La’s riverbanks, twilight transformed into glistening, shimmering views of the U.S’s most colorfully lit city (I’m biased!) – or at least the only one connected by 446 works of art we call bridges.  This convention was also our last with André, our dear photographer of many cons, doing his incredible art-making of us, in digital photography.  (We love and miss you, André!)

Aug 2022 – Ya’ll met in the infamous Music City thanks to Mike and Sherri Steele and Cynthia Moynihan

Another year rolled by with planning and anticipation of our first convention in the all-night music city of Nashville, Tennessee!  What a time it was – touring a very-hearing-accessible Library, experiencing the Grand Ole Opry (backstage and front stage) and strolling into clubs and on rooftops well into the am hours.  One of these clubs, the Wild Horse Saloon (with horses on the ceiling and everywhere else in the saloon!).  Wild Horse allowed us to bring a beautiful ASL interpreter and our own amazing Julia Stepp providing real-time captioning of the music. Both were awesome hits in addition to the great music artists playing that night.  Knowing the music, but maybe or maybe not hearing it, we danced up a storm!  We also wowed the crowd by having these two there… many people besides us appreciated having synchronous song lyrics and “live-screened” ASL interpretation.

July 2023 – And all who could went any which way, plane, train, or automobile, to Vancouver, B.C., eh! (With many cross-border and international thanks to our spectacular hosts, Lorne and Joann Smith.)  This was the Say What Club’s second international convention held outside the United States.  And it too, was another fantastic convention in a cool place compared to the rest of the sizzling continent.  And of course, its share of stimulating activities – the water taxi dance, a city-wide sightseeing tour, the truly unique Beatles greatest hits show disguised as Bard on the Beach, food tours, and bakeries and sushi – oh my!  And did we mention our gorgeous Northwest Canadian scenery and friendly host hotel and city?  And while we were hoping for the Northern Lights and they failed to appear, we did manage to enjoy many of our first-ever or first post-pandemic international excursions, except that nasty little “bug” that hit us there or followed many of us home!  Thankfully, all of us cared for each other while there and made sure each made it safely home and recovered.  A convention full of memories that made their way home with us and will carry us onto next year.  Here’s to all our continued health, more new Canadian friends, and a convention next year to look forward to a little south of this same U.S./Canada border.  Eh!

The ADA and its importance to those with hearing loss

Posted on by swc-dmatthews

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.

Hope

Posted on by swc-kward
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!