Categories
Connections deaf Hard of Hearing Hearing Loss Live Theatre Speechreading/Lipreading

Michael Conley Playwright, Reading Lips

Our guest this week is playwright Michael Conley who talks about his play “Reading Lips“. Michael was born in a small town in Kansas. After high school in Chicago and college at the University Delaware, he moved to New York. He received his MFA in screenwriting from Columbia University. Michael currently resides in San Diego and is the Co-Vice President of the San Diego Chapter of Hearing Loss Association of America.

Michael’s plays have been presented in New York, San Diego and Philadelphia.

Michael: Writing “Reading Lips” brought out a part of my identity that I didn’t even know was there. Meeting people with a hearing loss and learning that they experienced the same challenges I have always faced made me realize that I’m part of a larger community. That although I had been struggling my whole life with developing tips on how to “get by” (as I call it), everyone else was trying to get by as well.

Working on the play introduced me to a lot of people I would otherwise not have met. Meeting those who used ASL to communicate made me want to learn ASL. That in turn led to studying Deaf Culture—this history that we all share (even if peripherally).

At the time, I thought “Deaf people” were only people who had no hearing at all. I remember asking someone who was completely deaf if they consider me as Deaf. “Sure!” Not only did that give me more insight into the range of hearing losses people have, but it also gave me an appreciation of how inclusive and embracing the Deaf Community is.

Chelle:
I love making connections with others who have hearing loss. Everyone has something to teach me. I attend Audible Talkers Toastmasters meetings which are held online. I’ve been a member for a year and a half. Their meetings are accessible to the Hard of Hearing (HoH) with live captioning and automatic speech recognition. HoH members get a transcript, or outline, of each speech before the meeting, allowing us to enjoy the live speech and provide more effective feedback. The club is supportive and their members, HoH, hearing, English as a second language, and more, are each fascinating in their own way.

Michael was a guest at recent meeting (anyone can attend as a guest). Alongside his name I noticed readinglips.com. Of course I had to investigate that! It turns out Michael is a playwright and that makes it all the more interesting so we invited him to podcast with us. It was great having him with us.

On his website, Michael shares information about his play, “Reading Lips”, a full-length play about being gay and Deaf. While writing the play, he posed the questions, “Am I gay man who happens to be Deaf? Or a Deaf man who just happens to be gay?” In the upcoming podcast with Hearing Loss LIVE!, Michael shares, “Having a hearing loss has made far more of an impact on the choices I made in life,” and that made me think.

Hearing loss changed the course of my life after the last big drop. How many times have I thought ahead and said, No I can’t go. It won’t be accessible to me. I quit the one job I thought I’d be doing all my life because of hearing loss. I went into a deep dark hole which took a few years to climb out of. Hearing loss impacts our lives in many ways.

Hearing loss affects relationships in our family too. During our podcast together, Michael tells a story about how growing up with a hearing loss affected his family life. I’m not going to spoil the story here, you’ll have to watch.

Gallaudet University Campus, Washington, D.C.

Photo Credit: Reading Lips website
June/July 2019: Michael Conley studying American Sign Language (ASL) at Gallaudet University, Washington, D.C., the world’s only university for the Deaf and people with a hearing loss.

Photo Credit: Reading Lips website

Michele: Before our podcast with Michael, I read everything on his website and searched for more information on the internet. I was especially interested in his experience at Gallaudet University, as I’ve thought about doing something similar—spending a semester or two studying American Sign Language (ASL) and immersing myself in a community rich in Deaf culture. I especially love Washington DC, so there’s that too.

Because there was a no-voicing policy in his program at Gallaudet, Michael talked about how liberating it was not to have to wear his cochlear implant (CI) or hearing aid, and not having to position himself to read people’s lips. I can relate. I’ve never worn hearing aids (other than in trials) or CI. If there is any consolation in not finding help with technology, it is a certain freedom from trying to hear better—something members of Deaf culture understand and embrace—which in turn has allowed me to focus more on communicating better.

I sometimes think people with hearing loss are so focused on their quest for technology to help them hear better, they miss the really important step of learning to be comfortable with who they are without any type of aid or communication tool.

We are likely never going to hear as well as we would like to in some situations—battery failure, too much noise or distance, and/or weak WiFi and cell phone service depletes the effectiveness of our hearing devices, assistive listening technology, and ASR (automatic speech recognition) apps. Even lipreading, textual English, and ASL are a challenge without a readable speaker, captioner, or interpreter.

However, if we can learn to communicate confidently even without any of the valuable communication tools and technology we rely on, we are going to have a life with fewer limits. That is no small thing.

Julia: We are always looking for like minded folks to podcast and blog with. Chelle asked us to review Michael’s website and see if we liked the fit. I read the first three lines of “Reading Lips” and responded, oh yes!

I love the theater. Grew up on it. By age eight I could tell folks what costumes were different in that season of Ballet West’s “The Nutcracker”. I love musicals and often sing show tunes around my house—some lyrics I make up depending on my mood. I’ll take thought provoking, personal growth and experience, small theater any day. I would love to see a production of this play. It’s different and refreshing. It’s about finding your identity. As much as I love the originals, small playhouses where the director and playwright work together I find so enjoyable.

The first time I met Michael was in a Hearing Loss LIVE! Self Advocacy workshop presented by Michele Linder. Michael asked a question, why would folks not just ask for what you need? Why indeed! We need more HoH people to adopt this mindset. Be proactive, be diverse. Be the best HoH you can be!

Watch our companion podcast with Michael.

If you liked this podcast, try artist Liza Sylvestre who explores her hearing loss through art. Also take a look at our blog with Salt Lake Acting Company who offers open captioned plays.

Categories
Accessibility Advocacy Captioning CART (live captioning) Communicating with Hospital & Medical Staff Communication Practices Hard of Hearing Hearing Loss Misconceptions Speech to Text Captions

Hospital Communication for the Hard of Hearing

By Michele Linder

Q: What’s missing in hospital accessibility and language services?

A: CART (Computer Aided Real-Time Transcription or Communication Access Real-Time Translation)/textual language interpretation for the Hard of Hearing! 

Check your hospital’s nondiscrimination policy and/or accessibility/language services information—yes, do it right now so you know—and they likely read similar to mine.

“Essentia Health provides free aids and services to people with disabilities to communicate effectively with us, such as:

  • Qualified sign language interpreters.
  • Written information in other formats (large print, audio, accessible electronic formats, other formats).
  • Provides free language services to people whose primary language is not English, such as: Qualified interpreters.
  • Information written in other languages.”

NOTE: Clicking on the link above you will see that in addition to sign language for the Deaf, I can also get translation in the following world languages: Amharic, Arabic, Bantu, Chinese, Cushite, French, German, Hindi, Hmong, Italian, Japanese, Korean, Laotian, Nepali, Norwegian, Pennsylvania Dutch, Polish, Russian, Serbocroatian, Spanish, Swahili, Tagalog, Telugu, Urdu, and Vietnamese.

However, there is nothing listed for those of us (over 95% of people with hearing loss) who need Speech-to-Text English Interpretation.
✣ ✣ ✣ ✣

Here is another from the prestigious Mayo Clinic in Rochester, Minnesota, where I have received care: 

“Accessibility services at Mayo Clinic in Rochester, Minnesota

Mayo Clinic is committed to making its buildings and services accessible to all.

Accessibility services can be found all across our campus — and they’re always free of charge. Just ask one of the friendly door attendants or patient care staff at any Mayo Clinic building. They’ll make sure you get what you need.”

Yet, as you scroll down the page this what is listed for Hearing-impaired services on the Mayo Clinic’s website: 

“Sign language interpreters are available at no charge to patients. Simply tell the registration staff or appointment scheduler that you’ll need an interpreter.”
✣ ✣ ✣ ✣

THREE IMPORTANT POINTS TO REMEMBER
  1. Over 95% of people with disabling hearing loss use spoken language to communicate. Providing them with sign language interpretation is useless. They need textual language services in their spoken language.
  2. The Americans with Disabilities Act (ADA) recognizes CART, textual language interpretation, as a reasonable accommodation for communication access. It is the equivalent of ASL interpretation, in that it meets the needs of the HoH community in the same way sign language interpretation meets the needs of the Deaf community.
  3. The world has many misconceptions about the HoH community, and many people with hearing loss are unaware of their right to accommodation and lack knowledge of what is available to them for communication access.
ON A PERSONAL LEVEL

I am a good self advocate and communicator. I am also knowledgeable about the accommodations available to me. Here is my take on the ones I’ve used in a hospital setting:

  • Lipreading & Clear Masks: Because my primary mode of communication is lipreading, I know that it doesn’t always work, so relying on clear masks and lipreading for medical appointments isn’t a great solution where important medical information is being relayed or you need to follow instructions. Also, not everyone with hearing loss can lipread.
  • Pen & Paper: Never underestimate the power of writing it down. It’s a great way to communicate for something simple, however, my recent mammography experience is why it is not a good option in many situations. I had told the tech I wouldn’t understand her at all with masks, she should gesture or do whatever was needed to give me direction, and when all else fails she would have to write it down. The tech continually spoke to me. “You’re going to have to write it down,” I responded each time. To which she would begrudgingly grab her pen and paper—clearly frustrated that I couldn’t hear her. It isn’t a wonder HoH people dread medical appointments and often skip them.
  • ASR (automatic speech recognition) apps for smartphones: Definitely a help, but often not accurate due to background noise, distance from speaker, unclear speech, or poor WiFi/cell service. Take my recent ER visit to Highland Hospital in Rochester, New York. I checked in using Otter after asking if the hospital had iPads with speech-to-Text communication. They did not. Once in the treatment area Otter would no longer work (WiFi was likely the issue as we went into the bowels of the hospital) and I brought up the Notes app on my iPhone. No punctuation, capitalization, or speaker designation, and lacking accuracy.
Interpretation Cart in use at Highland Hospital. I have spoken to the hospital’s Social Work Department, and to the CyraCom (the maker of the cart) to advocate for CART/Text Interpretation.
Screen shot of the poor ASR text in my iPhone’s Notes app. NOTE: PA’s words are highlighted.
  • Interpretation Cart: Some hospitals have a cart on wheels with a tablet or iPad attached to the top to provide language services remotely. I was so excited to see that Highland hospital had one! That is, until the Physicians Assistant (PA) brought up the video with a sign language interpreter even after I told her I don’t communicate with sign language. Expectantly, I asked for CART instead, and was told there was no Speech-to-Text option, only sign language and world language translation. HUGE disappointment! I was forced to continue to limp along with the Notes app. I told the PA they really needed to add a CART option since over 95% of people with disabling hearing loss use spoken language and don’t use sign language to communicate. She said, “Your phone app is working just fine,” so I showed her the text of her speech, which had her saying the “F” word. She laughed and said that wasn’t what she said. I didn’t think it was funny.

Wanting to communicate for myself is NOT too much to ask. And, wanting the accommodation that is most effective is not an unreasonable request. If a hospital is willing to provide ASL Interpretation, they should also offer CART/textual language interpretation.

In early May, I had my annual physical and mammogram. It’s colonoscopy time again. Oh Joy! My doctor referred me for a telehealth appointment prior to colonoscopy to discuss some other GI issues I am having, and also put in a request for CART (my mammography experience is why I asked my doctor to request CART in her referral) for the procedure itself. In addition, I have a spot on my hand that my doctor wants biopsied, which means a Dermatology (Derm) appointment.

Turns out getting the Derm appointment and scheduling telehealth with Gastroenterology (Gastro) isn’t so easy, as their departments do their own scheduling. I can’t make appointments with them online like I can with my other doctors. It’s been a month and no one has called, as I was instructed they would, so I stopped in at my clinic closer to home to see if scheduling could give me some help. I was again told, “You have to call them, we can’t schedule those departments.” I’ve tried for weeks, only to reach a recording and being put on hold for over ten minutes and still not getting through. I can’t in good conscience expect an InnoCaption CA (call assistant) to waste their precious time on hold for an indefinite length of time. 

I get the recording every time, no matter what time I call.

So last week I went to the hospital. 

  1. To try to find the point person for scheduling accommodations. My doctor requested CART with the colonoscopy referral. I received this email response from the Gastroenterology (Gastro) Department: “Hello! After speaking with my manager he would like you to bring a visitor with you that can help with communication between nursing staff and yourself. Otherwise if you use sign language we can always bring in an interpreter.” Um, just NO! And, how will I be able to lipread a masked “visitor” any better than masked nursing staff?
  2. I need a timely appointment with Derm.
  3. I need a telehealth appointment with Gastro before my colonoscopy.
  4. I want to speak with a Patient Advocate, a Social Work person, or an Accessibility Officer who can help me get the hospital up to speed on providing CART. 

The Derm appointment was a breeze, but it’s not until November. Sigh…

I had success in getting contact info for the accommodations person, but here is how that went:
Me: Addressing the Guest Services Volunteer (GSV) at the information desk: Hi, I’m a lipreader and that’s impossible to do with masks, so I’m going to bring up a captioning app on my phone so I can read the text of what you say.” 
GSV: He begins talking and signing before my captioning app is enabled: “Blah, blah, blah, blah, blah,”—that quote is for both speaking and signing, because I can’t hear what he’s saying and I don’t know sign language.
Me:I’m looking for someone in charge of scheduling accommodations, an accessibility officer, or a patient advocate.”
GSV: He starts talking and seems perturbed because I’m not watching him talk. He keeps trying to take my attention away from my phone screen with the text of what he’s saying. 
Me: “I can’t look at you while you speak, I need to look at my phone screen to read the captions. No, I don’t need an interpreter, I don’t know sign language, I’m a lipreader.”
GSV: He seems to know just who to call, and does. Once she picks up, he tells her what he assumes I want to talk to her about. He treats me like I’m helpless and have no idea about what I need.
Me: I interrupt, because I’m reading the text of what he is telling her on my phone. “That’s not what I want, I’ve already made the CART request, but I’m having trouble getting the accommodation I requested.”
GSV: He puts the phone on speaker and shoves it toward me to speak with the ASL Interpreter on staff who is the program manager of language services. 
Me: I tell her what I’m trying to do. She responds, “I’m still working on getting CART and what I was told was that it would take a long time to get CART but I’m trying my best to make this accommodation for you.” She continues explaining that getting CART is hard. I tell her it isn’t hard, or any harder than getting an ASL Interpreter, but that if you don’t do it routinely, you need to learn how. I suggest we exchange emails and she agrees that would be best and after we exchange information the call ends. NOTE: The language service manager and I have continued to correspond via email and I sent her the contact information for a CART provider I have used in the past at a political convention who provides medical CART at the Mayo Clinic, Minnesota.
GSV: After the call ends, “So have you done anything with DHHSD (Deaf and Hard of Hearing Services Division) at all? 
Me: “Yes, I have dealt with DHHSD various times, but the local director, who is culturally Deaf, does not have a good understanding of HoH needs, they are more focused on the Deaf community and sign language.” NOTE: I’ve since learned that the director I’ve dealt with in the past has retired and I’m in the process of connecting with her replacement.
GSV: “DHHSD would be the best way to go.”
Me: ”Actually, the hospital should know how to provide any accommodation request without relying on patients to provide their own devices for text. It’s pretty ironic that I’ve shown up several times (pre-Covid) for appointments or tests at the hospital to find an ASL Interpreter waiting when I hadn’t even made an accommodation request. But, when I make a request for the accommodation that meets my communication needs—CART—it seems it’s “TOO HARD” to get it.”

I thanked the GSV for trying to help me and headed to the Gastro department through miles of skyway. To my surprise, I bump into the same GSV near the elevators that will take me to the Gastro Department. He says he’ll meet me there as he rushes a patient away in a wheelchair. 

I approach the Gastro registration desk and begin talking to the woman behind the plexiglass. The GSV rushes in, barges in front of me, interrupts, and starts telling the woman what I need.

Me: “Excuse me, I can communicate for myself. I don’t need a communication go-between,” and take over for myself. I can tell the woman behind the plexiglass is silently cheering me on. She sends me to another woman at a desk and we discuss the telehealth appointment my PCP wants me to have with the Gastro doc before my colonoscopy. The GSV continues to interrupt every time the woman at the desk is busy on her computer, talking when I don’t even have my captioning app enabled and not being patient enough to wait for it to kick in. I tell him, “I really am deaf, I can’t hear anything you are saying behind your mask. It may seem like I can hear because I can talk, but I can’t hear.”
GSV: He continues to try to talk to me while I’m trying to talk to the woman behind the plexiglass.

I’m sure others encounter well-meaning but insensitive people in their medical appointments. Here is what those people need to know about how to communicate with someone who is Hard of Hearing:

  • Listen closely to the person when they are telling you what you need to know about their hearing loss and communication needs. Over 95% of people with disabling hearing loss do not sign, so don’t start signing right off the bat.
  • Assumptions cause offense. Hearing loss is diverse and each person is different. One size does not fit all. If the person doesn’t give you direction on how to communicate with them, ask.
  • Be patient with people who communicate differently and need more processing time.
  • Treat the person with respect. Assuming a person with hearing loss is helpless and uninformed is offensive.
  • A person with hearing loss cannot focus between two conversations going on at once. Wait until they acknowledge you before you start speaking.

Hospital volunteers need sensitivity training.

I’ve been researching and finally found this Interpreters and Translators, Inc. (ITI) blog, Top 5 Video Translation Services in Healthcare that states this truth: 

Access to healthcare for deaf and/or hard-of-hearing people is often overlooked, but it is an enormous issue. The American Journal of Preventive Medicine reports that deaf and/or hard-of-hearing individuals go to the doctor less often and make more trips to the emergency room.

“CART services are also necessary to help organizations remain compliant with the Americans with Disabilities Act. While it is true that an ASL medical interpreter is often used in a healthcare setting, the majority of deaf and/or hard-of-hearing people rely on CART services.”

Symbol for ASL Interpretation on the Interpreters and Translators, Inc. (ITI) website. There is no similar or clearly defined CART symbol on the homepage. You find CART & Text Interpreting in the dropdown menu under “What We Do”.

And yet on their homepage CART & Text Interpreting isn’t highlighted specifically with any recognizable graphic. You have to hover over the “What We Do” tab to find it in the dropdown menu. Many HoH people will not look past the homepage. That’s a big issue for me, CART deserves equal billing with ASL Interpreting on website homepages and anywhere ASL Interpreting appears.

It occurs to me that we need a symbol other than CC for CART. And, maybe Text Interpreting, Speech-to-Text Interpreting, or Textual Language Interpretation are better labels? Does anyone have other suggestions?

Something has to change. The HoH community needs to start a CART movement NOW! CART is the most effective and accurate communication access accommodation, and it is time that hospitals and companies like CyraCom (maker of the Interpretation CART used at Highland Hospital ER) add CART/Text Interpretation to their language service options.

Until CART has equal billing with Sign Language Interpretation everywhere, including hospital and medical facilities, the HoH are going to remain unaware of the communication access accommodations available to them. Expecting the HoH to provide their own devices for captioning apps is not going to cut it, as some may not have a smartphone, and even more will have no knowledge of captioning apps.

Last, I know that healthcare workers would also benefit from iPads or tablets with software for text communication, because I ask. Every time I go to the doctor or hospital, I have a routine that I go though with every medical employee I encounter: “Twenty percent of the population has hearing loss, I bet you get a lot of Hard of Hearing patients and communication is challenging?”

“Yes, we do!”, is always their response.

“Wouldn’t it be great if your hospital provided you with screens for text communication, which is what over 95% of people with hearing loss need for communication access?,” I add.

How can we get this done? It shouldn’t be this hard for the Hard of Hearing to have equal access to communication at the hospital. Their life may depend on it!

We don’t have a companion podcast for this post. If you liked this post, you might like Self Advocacy and Defining the Hard of Hearing.

Categories
Advocacy Hard of Hearing Hearing Loss

Gael Hannan & Shari Eberts Talk About Their New Book

Hear & Beyond:
Live Skillfully with Hearing Loss

We are excited to have Shari Eberts and Gael Hannan as our guests this week! Both are passionate hearing health advocates, writers, and speakers on hearing loss issues. At the beginning of the pandemic, Shari and Gael began collaborating on a book, a “how-to guide they wish they’d had at the start of their hearing loss journeys.” Hear & Beyond launched on May 3rd.

Shari Eberts is the founder of Living with Hearing Loss, a popular blog and online community for people living with hearing loss and tinnitus, and an executive producer of We Hear You, an award-winning documentary about the hearing loss experience. Shari also serves on the board of directors of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues. 

In collaboration with the Ida Institute, Shari has authored an e-book, A Primer on Person-Centered Care From the Patient’s Perspective, encouraging Hearing Care Professionals (HCPs) to:

  1. Partner with their patients
  2. Make their office hearing loss friendly
  3. Embrace creativity 
  4. Think beyond the technology

Gael Hannan writes a popular weekly blog as the Better Hearing Consumer for Hearing Health & Technology Matters. Also, as a leading international hearing health advocate, Gael has created awareness campaigns, school programs, and award-winning presentations that help people better understand life with hearing loss, including her ground-breaking one-woman show Unheard Voices. Gael’s critically-acclaimed book The Way I Hear It: A Life with Hearing Loss, written as part memoir and part survival guide, has helped readers around the world to embrace their own hearing challenges. Gael has profound hearing loss and is bimodal, using both a hearing aid and a cochlear implant. 

Part of the reason we started Hearing Loss LIVE! was to spread awareness about the Hard of Hearing (HoH) community, our needs, and the accommodations that give us full and equal access. There is no one size fits all for the HoH, but a common thread in our experience is the lack of practical information on how to gain the knowledge, skill and confidence to live well with hearing loss. Like Shari and Gael, we want others to have immediate access to the information that we wish we’d had at the start of our journeys.  

Person-Centered Care is one important way for people with hearing loss to access the things they need to live well. Part of our HLL! message to audiologists, and other HCPs, is that patients and clients who are more knowledgeable about their hearing loss are more comfortable and confident, and as a result will see greater benefit from their hearing devices.

Podcast central at my house. I was about halfway through Hear & Beyond, but skimmed through the entire book before the podcast. So many things I relate to… stumbled upon many of the same conclusions, but in my own way.

Michele: Some of us don’t find benefit from technology. My own experience with hearing aids (HAs), and most assistive listening devices (ALDs), spanned more than three decades of frustration and disappointment. Once each HA trial was exhausted—I tried HAs every few years from age 21 through my 50s until I reached the profound level—no other solutions were offered by my audiologists, leaving me to figure out how to live well with hearing loss on my own.

My shift in focus from hearing better to communicating better came from not having a choice. I either had to learn to communicate without hearing, or accept dependence. The latter simply was NOT an option. 

Over time, I learned you don’t have to hear to communicate. And, you don’t even have to share a language to communicate. Decades of solo travel around the world forced me to become an effective and flexible communicator and self advocate.

Through early adulthood, I had it in my head that I was simply a hearing person who didn’t hear so well. My experience didn’t seem as valid as those who wore hearing devices or were a part of Deaf culture. I also learned an unhealthy diffidence from a young age, and not just in relation to hearing loss. Putting others’ needs and feelings—even strangers—before my own meant I didn’t ask for help or accommodation, because I didn’t want to inconvenience or burden others.

With each hearing dip it became necessary to hold my attitudes, mindset, and accepted social norms up to the light to see what no longer fit or served me well. I had to make some big changes in order to live the life I wanted. Many of those changes are mentioned in Hear & Beyond. I learn something new whenever others share tips and tricks from their hearing loss journey. Thank you, Shari and Gael!

Julia: How does change happen? By combining efforts with others. Sharing our experiences with hearing loss helps. It helps with the grief. It helps with the feelings of loneliness. It helps us to talk with our family members. It just helps. Every time we come together and share we help one more person. It is time for the stigma of hearing loss to be a thing of the past. It is time to step up and let our voices be heard. It is time to take our shared experience and hold out a hand for those who will someday walk the same path. And it was definitely time for a book on navigating life with hearing loss! Well done ladies!

A peek at my varied interests in reading. The HoH books I picked up over the years are in the mix including Gael’s The Way I Hear It.

Chelle: Books are my go-to therapy and I’m an avid reader. In 2009 I was scouring bookshelves and Amazon for books on hearing loss while I was in my deep dark hole of hearing loss. I was looking for a way out of the mess and though I read a lot of them, nothing was quite what I was looking for. I have not had a chance to read their book Hear & Beyond yet, but I will soon. (I’m the kind of person who has 5 books going at any given time. At some point, I feel I must finish them before adding another to the mix.) During our podcast they said they wrote the book they wish they had when they were exploring hearing loss. I’m sure it’s something I’d have appreciated thirteen years ago. 

I also have a Kindle with many books, several of which are also related to hearing loss. That’s how I’ll pick up Hear & Beyond. Years ago I bruised my shoulder flying a long distance with a book bag carrying 5 books, those days are over for me. A Kindle is much easier to haul around when traveling, which I do often.

It’s fun being in the same place with other advocates, discussing hearing loss and advocacy. I think we all have a lot to say and we could go on passionately for hours discussing options and ideas. Having Gael and Shari with us for about an hour was a real treat, be sure to watch our podcast with them coming out on Monday the 13th.

Categories
Accessibility Advocacy Connections Hard of Hearing Hearing Loss Sensory Loss

Meaningful Connections with People

Connections spread awareness. We touch each other’s lives, then go on to share what we’ve learned. The Hard of Hearing tribe is a giant web of people connected together. 

Chelle: There are so many great connections to make within the Hard of Hearing community. I’m so glad I had the urge to search out others like me, my tribe, because it gave me my place in life.  In the mid/late 90’s I found the SayWhatClub (SWC). I had an email full of people who got it and introduced me to accommodations, life skills and technology. I went on to meet them at Camp Colorado in 1998. About 30 of us met at Rocky Mountain National Park and hung out together for about 4 days. No one felt left out, we connected over hikes, campfires and tours. I’m still connected to several people from there.

Chelle (5th from the left): 1998 SayWhatClub gathering at Rocky Mountain National Park.

Hearing loss conventions are great for making connections. It’s all about the people for me, though I enjoy the workshops too. My first convention was the SWC con in Salt Lake in 2012. Their cons are small and intimate so I got to know just about everyone. I made several, lifelong, friends here. Then I went on to the Hearing Loss Association of America (HLAA) convention. They are bigger with more choices in workshops, I love their exhibit hall. I met several wonderful people there. We may not talk often but when we need something, we’re there for each other. Another great group of people, the Association of Late Deafened Adults (ALDA). Karaoke with HoH/deaf friends will rock your world at ALDA cons. If I could, I’d attend all 3 every year. Guess what? They are all 3 coming up!

  • HLAA con June 23 – 25, 2022 in Tampa, FL
  • SWC con August 10 – 13, 2022 in Nashville, TN
  • ALDA con October 19 – 23, 2022 in San Diego, CA
Chelle (far right) and a few of her Utah people.

Supporting the hearing loss community in as many forms as possible is another passion. I’ve attended many other HLAA chapter meetings, not just my own in Salt Lake City. It’s wonderful that most are online these days so we can join from anywhere. I joined the Audible Talkers Toastmasters club out of Arizona, also online and accessible to those with hearing loss. I’ve been there for two years and it has proved to be a valuable experience. I met more super people here.

Challenge yourself to know others with hearing loss, be it a local support group, online meetings, workshops, classes… whatever! They are some of the best people you’ll meet and there’s nothing like finding your tribe.

2015 SayWhatClub Convention in San Antonio, Texas. L to R: Robyn Carter, Me, and Vicki Turner, of Turner Reporting & Captioning Services.

Robyn lives in New Zealand and visited me when I lived in Germany. Vicki, who provided open captions for a live theatre event at the con, had connected with Robyn while she was in New Zealand. Small world!

Michele: Choosing connection over isolation is the way to go!

My grandma, who was deaf and taught me how to finger spell.

Family: My first meaningful person-to-person connection linked to hearing loss was with my grandmother. She lost her hearing in much the same way I did, and from the same young age. She was a lipreader who taught me how to finger spell (the extent of sign language she knew) as a child. When all else failed I would write to her. I am lucky that even before my own hearing loss diagnosis (grade school), I had a positive example of someone very capable in life in spite of their hearing loss. Eighteen years was not nearly enough time with her, and I miss her every day.

2014 SayWhatClub (SWC) Convention in Madison, Wisconsin: Leslie Cotter (Left) is a fellow Minnesotan who I met in 2008 when I joined SWC. We were fellow volunteers and met for the first time in person in 2009 when she invited me down to the cities to meet Cathy Hilden who was in town.

Chelle Wyatt (Middle) rejoined SWC in 2009 and we became online friend and fellow volunteers. We didn’t meet in person until 2014. We’ve visit each other regularly over the years since.

Steve Nye (Right) joined SWC in 2013 and we met in person at 2014 convention and a few cons since.

Peers: When I began connecting with people in the Hard of Hearing community online—unfortunately, not until my 40s—I was amazed. Having a common focus shrank the world down to a small international group of people that I crossed paths with in many different places.

I met Julia Stepp in person for the first time at a Salt Lake City HLAA Chapter meeting where she provided CART. Julia has been the CART provider for several of our SayWhatClub Conventions and will be in Nashville this year!

That led to finding a peer support group (SayWhatClub-SWC was my first) where connections happen naturally. Many connections turn into lifelong friendships, and that is how I met Chelle. Information, experiences, and invitations shared by peers led to other connections. I met Julia while visiting Chelle, and I also connected with some other great Utah people. When their Division of Services of the Deaf and Hard of Hearing (DSDHH) opened up their online classes during the Covid lockdown, I made new connections during Speech Reading and Living with Hearing Loss classes.

Volunteering: After joining the SWC in 2008, I was asked to volunteer almost immediately. While writing for the newsletter and blog, and searching for content for the SWC public Facebook page, I connected with people and information that I probably would not have found otherwise.

Boise, Idaho: 2016 SayWhatClub Convention.
In 2018, Liza Sylvestre (second from the right), an artist with hearing loss, invited me and more than 50 others to take part in a Sensory Loss Symposium at the Weisman Art Museum in Minneapolis. I learn so much when I say “YES!” to participating and connecting. It was an amazing experience!

Also, researching to find solutions for newcomers on the SWC email lists led to some of my most meaningful connections, both brief and years-long. Volunteering resulted in helping myself even more than those I was trying to support. And, it kept me motivated to continue to learn and connect even when progressive hearing loss got me down.  

Movers and Shakers: There is so much creative energy in the Hard of Hearing community to connect with. I am continually initiating contact to find out more about artists, writers, advocates, communicators, service providers, and emerging technology developers who are doing great hearing loss-related work. Most of the responses I receive are from the actual creative person and it makes for some interesting email and messaging exchanges and even can lead to friendship.

Julia: “Hearing loss affects every family member, especially when it comes to communication. Communication is the key to staying connected. There are many tools that can help you stay connected. Most families don’t find these tools until the connection is a struggle and everyone is beyond frustrated. My hope is that this finds folks before the connection is damaged.”

Julia: Boy, meaningful connections. What would my life be without them? I would not have known how to navigate hearing loss myths with my own family. My family would not have the communication tools that they use every day. My kids would not have the understanding of different needs for those with hearing loss that they do. I would not be able to pass on to others the importance of family/friend support and that they too need to be in the know. 

I wouldn’t have met two thought provoking, self-advocating ladies to start a business with.

Don’t stop living your life. Learn about new tools. Make more friends and share advice. Hearing loss and Hard of Hearing needs are different for each individual. But shared experiences help us stay connected. Everyone needs a shoulder at times. Even those with years of hearing loss experience can learn new uses for that tool box just by being connected to others who have an experience to share. Get out. Share. Grow.

Join Hearing Loss LIVE! Tuesday, June 7th and let’s get connected with Talk About It Tuesday! An open discussion about hearing loss, online via Zoom with captions.

Watch our companion podcast here.

If you liked this post, try Finding Your Tribe because that’s where you find some of your most valuable connections. Connect better with your family, read Hearing Loss: Family and Communication.

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Accessibility Advocacy Communication Practices Connections Hard of Hearing Hard of Hearing Defined Hearing Loss Hearing Technology

The Better Connect Academy with Jean Nalbantian

Sometimes things just fall into place. One day we are looking at The Better Connect Academy (TBCA) website and the next day Jean (John) is contacting us to invite us to guest on his podcast. It is great when the stars align and the universe conspires to connect like minds on the subject of hearing loss. Hearing Loss LIVE! talked with Jean in late March, sharing our passions and what we do. We got to know TBCA further when Jean was our podcast guest—video will be available May 16th.

Michele, Chelle, and Julia are Jean’s guests on the TBCA podcast.

May is Better Hearing and Speech month, and we are celebrating American Speech-Language-Hearing Association’s (ASHA) theme of Connecting – People. Our crossing paths with Jean and TBCA is a great example of connecting and the timing couldn’t have been better!

Jean (John) Nalbantian, CEO and Founder of The Better Connect Academy

Jean: I am Jean (John) Nalbantian, the CEO and Founder of The Better Connect Academy (TBCA). We are an online course (about an hour long) that teaches enrollees how to provide effective communication for Hard of Hearing (HoH) individuals. 

Providing effective communication is federal law per the American Disabilities Act (ADA); we can help.

I have over 25 years of experience working with people who are HoH and deaf. I hold a BS in Human Services Management and two Gerontology program certificates from USC. My passion has always been to help, ever since I was a kid.

I identified a need within the HoH population and after hearing the same complaints over and over again, I decided to develop a course that educates the general public how to provide effective communication. The course has been reviewed by members of the HoH and deaf communities to ensure that nothing has been left out. 

The course is accredited by two entities, the National Certification Council for Activity Professionals as a Continuing Education course and by the American Academy of Physician Associates as a Continuing Medical Education course.

When enrollees are done watching the course and have taken the quiz, they receive a certificate of completion, which is an asset to their current employment but more importantly, helps them communicate with HoH individuals.

The goal of the course is to educate as many people as possible, especially people who work at medical offices, hospitals, restaurants, government offices and others. Every single business and organization should enroll their staff. 

Providing effective communication is federal law per the American Disabilities Act. The ADA states: “The ADA requires that title II entities (State and local governments) and title III entities (businesses and nonprofit organizations that serve the public) communicate effectively with people who have communication disabilities. The goal is to ensure that communication with people with these disabilities is equally effective as communication with people without disabilities.” 

So why should businesses and organizations risk receiving official complaints about not providing effective communication? We can help.

We want every HoH individual to advocate for themselves and if they encounter a business that has a difficult time communicating with them, then they should give our information to the supervisor or manager of the business. It’s a serious matter but it can be alleviated.

Eventually, The Better Connect Academy will push for this program to be mandated to all businesses, but it will require all HoH people to support the idea. As we grow, we will also plan on hiring HoH individuals. 

We appreciate Hearing Loss LIVE! for giving us the opportunity to speak about TBCA.

Chelle: What a pleasure to meet Jean and to get to know his business, TBCA. He has a big heart and cares about effective communication for our community. We watched the online course video and hope businesses will take HoH communication needs seriously by taking the course. Many places I go lack effective communication and I am constantly educating. 

If you are HoH, share TBCA’s information when businesses get it wrong. I find most businesses mean well but they just don’t know. People know the ADA but they rarely get specific education. We can help, you can help, and Jean can help. We all need to work together to make a more accessible community. When you advocate for yourself, you’re also laying a path for others who come behind you. Start small with self advocacy by sharing TBCA website when you find businesses on the wrong path. 

Julia: Working with other like minds means more folks understanding communication needs for people with hearing loss. If you haven’t heard me say it in the past, then let me say it again, “One size does not fit most with hearing loss.

The Better Connect Academy (TBCA) gets it. TBCA’s online certification to help businesses to be better trained on communication skills with their employees who have a hearing loss matches up nicely with live training offered from Hearing Loss LIVE!—Sensitivity Training for Business owners with respect to hearing loss. 

If you are a business owner and you need training and education on better communication with your Deaf and Hard of Hearing employees, The Better Connect Academy (TBCA) has a great course for you. Better yet, combining TBCA’s online certification with in-person training by Hearing Loss LIVE! will give you a more diverse and well-educated staff with respect to hearing loss and communication. Think of how you can promote and grow your workforce with employees who are vested in seeing your company grow because you took the time to get to know what people with hearing loss face and what they need. 

Something else we talk about, you don’t know what you don’t know. Hearing loss can happen at any time for any reason. If you are already practicing good communication guidelines with all your employees, that hearing loss fear and unknown is eased and help can be sought sooner. Erasing the stigma before an employee is facing hearing loss will ease their fears around hearing loss.

Michele: When advocating, I always try to make the point that responsibility for accessibility and inclusion should be shared, not solely shouldered by the person with hearing loss. Twenty percent of the population has some degree of disabling hearing loss and the world needs to know how to effectively communicate with us. And, that doesn’t mean Sign Language Interpretation for over 95% of us.

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities in several areas—employment, transportation, public accommodations, communications and access to state and local government’ programs and services. In addition, Federal Rehabilitation and State Human Rights Laws provide for full and equal access in these same areas.

However, not all businesses are proactive regarding compliance, and that shifts the burden of enforcement onto the person with a disability when there are issues. It is up to us to force businesses to comply by filing a complaint or lawsuit. We could use more help.

As customers, clients, and patients, with a communication barrier, we encounter the lack of effective communication daily. That is especially true in medical/hospital settings. The HoH need quality Speech-to-Text Interpretation/Translation, and that means captioning by a live stenographer on a screen provided by the medical facility or office. Many HoH people are unaware of the effective communication access accommodations available to them, or it doesn’t occur to them to request accommodation at the doctor or hospital. This needs to change.

We are thrilled that The Better Connect Academy (TBCA) is focused on helping those who serve the public own their part of the effective communication equation. We need more co-advocates like Jean who encourage entities to be proactive and provide them with the information and training needed for effective communication. TBCA’s online training course for employers and their employees is a valuable tool for spreading awareness of the HoH community and our communication needs and accommodations.

Watch our companion podcast here. Or listen to it on Spotify, iHeartRadio and BuzzSprout. Transcript is available on BuzzSprout.

If you liked this post, try Captioning Advocacy and Requesting CART.