SayWhatClub

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!

 

Don’t be Afraid to Travel with Hearing Loss: How Communication can be Better Overseas

Photo by Agustín Diaz on Unsplash

I have traveled quite a bit over the course of my life. From family vacations – to mission trips – to several years working abroad in Indonesia and Ghana, I have tried to see as much of the globe as I can. I even met my husband in Ghana and got married there. Traveling is in my blood. But as someone with moderate hearing loss, travel can also pose some unique challenges. I always worry that I won’t hear my boarding call when waiting for my flight and end up in the wrong zone or miss my flight altogether (while I have gotten in the wrong group to board, I have yet to miss my flight). Here are some tips for traveling with hearing loss and some ways communication is actually easier overseas!

Don’t Be Afraid To Ask for Help

Gate agents are there to help you. If you worry that you won’t hear your boarding call, explain your situation to the agent. They can make sure you board on time and in your correct group. The same goes for train or boat travel. Even if you are in a non-English speaking country, most people who work in the tourism industry can speak English and are willing and able to help you. If you can’t find an agent, your fellow travelers are usually able to help. When I have traveled by train, there is always someone willing to tell me if I am at the correct stop. Generally, people are friendly and want to assist fellow travelers.

There are Usually Signs Everywhere

The airport always has signs directing you to your gate and letting you know your departure time and gate location. The same is usually true for train stations (but not always, especially in a developing country). But if you can’t find the signs to direct you where you need to go, there are always agents around that can help. Or you can usually find maps and directions in English inside the terminal.

Hand Signals: an Effective Form of Communication

When I lived in Indonesia, I walked everywhere. I would often get a bit lost as I was exploring and have to stop to ask directions from someone who didn’t speak English. I found if I said “Paris Van Java?”, the main mall in Bandung, the city I was in, they could always point me in the right direction. Even general conversations could be had mainly using hand signals. If ASL is your primary language, you can usually get away with writing down a few words and using gestures to explain yourself. On the plus side, many people in non-English speaking countries can write English better than they can speak it. And people are often more willing to have a written conversation overseas than they would in the U.S. Especially in Indonesia, I found there were a lot of people who jumped at the chance to practice their English, whether by writing or speaking. Teach them some signs and you may find a new friend who is willing to show you around and introduce you to new adventures.

Don’t Be Afraid To Ask People to Repeat Themselves

I say “What?” a lot. I’ve found that if I am constantly asking someone to repeat themselves in the U.S., they tend to get annoyed. On the contrary, when I don’t understand someone overseas, they assume it’s because of their accent. They are usually more gracious to repeat themselves multiple times or say something in a different way so you can understand them. They also don’t tend to dismiss you by saying, “Never mind.”

If People Don’t Understand You, They Think it’s Because of Your Accent

Because I can’t hear certain soft speech sounds, I don’t always enunciate my words properly. Or I may not pronounce a word correctly. While some people are understanding, others are not. However, when I am abroad, people just assume it’s because of my accent. I would say ‘American accent’ but I’ve frequently been told that I don’t sound ‘American’. Most people tend to guess that I am German by the way I talk and by the way I look (my heritage is mainly German so that makes sense). But I have never had anyone ask me if I have hearing loss based on my accent (or on the fact that I can’t understand them).

Find the Local Deaf Advocacy Group or Visit A Deaf School

Different countries have different resources for people with hearing loss. If you are in Europe or another wealthy country, the local Deaf advocacy group may have different resources for you as a traveler or be able to recommend places to go and people you can connect to. If you are in a developing country, there are often very few opportunities and resources for those with hearing loss. Oftentimes isolated, a person with hearing loss has little communication with their society and denied educational or work opportunities. By visiting a school or group, you can provide encouragement and connection. And you can advocate for change by your example.

It may seem intimidating to travel when you have hearing loss. But you will usually find that people are willing to help and it is easier to communicate than you initially thought. Don’t be afraid to get out and explore!

About the Author

Jenny Beck is a chiropractor and advocate for the Deaf and Hard of Hearing community. She has had moderate hearing loss since a very young age. She is passionate about health, travel, writing and spending time with her family.

 

5 Points of Volunteering

By Chelle Wyatt

Finding your people.

Hearing loss can be lonely. The world feels against you, sometimes your family too. It’s a deep, dark pit of quiet (and tinnitus). If you’re lucky, you wander across a support group like the SayWhatClub and start to feel a little less like a freak.  You begin feeling at home with a bunch of new friends, making meaningful connections.  

After another big hearing drop in 2009, I re-joined the SayWhatClub. Six months after being on the list, someone asked me to volunteer. I hadn’t thought about it, but why not? It wasn’t like I had anything else going on. I had just quit doing hair after 20 something years because I was deaf in noise. My self-confidence was at an all time low. I was cleaning a few houses and offices (not much hearing involved with cleaning), and I had nowhere else to go so yes, why not give of my time. Most of the offices I cleaned were aided by phs who helped the employees in the offices to stay clean and healthy. 

Point 1: Volunteering opens up other worlds, the 2nd phase of leaving isolation behind.

I became a list representative for a SWC email list. I was introduced to another part of the organization, meeting more who were hard of hearing and gaining new friends. Friends were important because I’d already lost a few because of my hearing loss (I couldn’t “chat” endlessly on the phone anymore). I appreciated my fellow volunteers just as much as I did the others on my email list and over time, one of those volunteers became a very good, dear friend. SWC became my safe place for communication, it’s a written world with no hearing involved.

Point 2: It kept me busy and stopped my negative thinking cycle.    

Being a list rep gave me back some of the responsibility I had been missing. I popped into email often to make sure the list was moving along smoothly. I welcomed new people to the list, trying to make sure their questions were answered hoping to pass on the same sense of home I felt. Occasionally I helped settle differences of opinion, in the spirit of teamwork. It kept me busy and kept my mind off my own troubles.

When the SayWhatClub held a convention in town, I volunteered for that too. I enjoyed being a part of building the con and putting faces to names, gathering more friends in the hearing loss world.

Point 3: Volunteering for SWC gave my own hearing loss a sense of purpose.

Over time, my hearing loss became less of a burden and started to feel like experience to share; on the email list, in the List Rep committee, conventions and writing on the SWC blog. I became a professional full time volunteer, I joked, as I became the List Rep chair. I was reaching out more into the hearing loss world for convention purposes, meeting more people. My self-confidence built back up. I was far from isolated and my hearing loss was asset in this world.

Point 4: Learn new skills while volunteering.

While stepping into my roles, other volunteers with experience supported me along the way. I wasn’t sure about being List Rep chair but the former chair was on hand to answer questions and offer advice when needed. The same with the convention committee, I knew nothing coming in but had the will to learn. I learned to reach out further into the hearing loss world, looking for guest speakers and sponsors. It was all valuable experience and I learned to be a leader again.

Point 5:  It looks good on the resume.

A local part-time job opened at the state Deaf and Hard of Hearing Center as a Hard of Hearing Assistant. The job required teaching classes and giving presentations on hearing loss. I almost didn’t apply for a few reasons. I thrived in the online world. Also, I was still trying to find my way back into doing hair, clinging to my old life, should I give up on that? What the heck I decided, maybe I could do both hair and hearing loss part time so I applied.

 

Which required writing a resume, the first in a long, long time. Adding information to the resume made me realize I had more experience than I thought, thanks to SWC. I learned I could organize events. During the two years I was off from doing hair, I built new skills and worked well with others. Because  I hadn’t been idle, I got the job. I worked part time for 5 years, and in January 2018, it became a full time position.

The hearing loss world gave me a place to belong.
I found my tribe, across the United States and right here in Utah. I never would have pictured myself ‘here’ nine years ago when I was struggling after another big drop in hearing.   And ‘here I am in a whole new life!   I have let go of doing hair almost entirely. Now I embrace the hearing loss community. This is where I belong, and SWC helped me get there.

I encourage others to volunteer, especially if you’re in that pit of isolation. The 

SayWhatClub emphasizes the benefits of volunteering in its Mission Statement. We understand that helping others reduces feelings of isolation, frustration and despair, while enhancing feelings of self-concept and optimism. Open yourself up, and see where it leads. Other SWC volunteers will support you in learning new skills.  What do you want to learn? Where might you go? The

re’s lots of opportunity in SWC.  

Some areas SWC needs volunteer help

  • The SWC website committee needs people to keep the webpage current by checking links and editing pages.
  • Help the Hospitality Committee welcome new people into SWC who inquire on the website.
  • The List Representative Committee could use help on the Facebook groups, and if you’re on an email list already, inquire if they might need help.  Two of the lists are looking for new List Representatives.
  • The Social Media Committee is looking for people to help with the main SWC Facebook page, making memes for SWC, writing on the blog, and would love to have someone make our Twitter account active again.

Remember no experience required, just a willingness to learn.