With the Global Alliance of Speech to Text Quality Caption Task Force
Our guests today are:
Sebrina Crosby, CRC. Sebrina is a Realtime CART Captioner and owner of Access Captioning, LLC
Kimberly Shea, NCSP, CRC. Kimberley is a realtime broadcast/CART captioner and she is the President of Breaking Barriers Captioning Services, LLC.
Serbina and Kimberly volunteer with Global Alliance Speech to Text with the Quality Caption Task Force
Captions are our access to television. Without captions, we have to make up our own stories with what we see. We did a podcast with Liza Sylvestre early this year, an artist who uses her hearing loss in her art. Her project “Captioned” is a good example of what we do without captions. Captions are our language. Quality captions matter. Don’t make us guess, especially when the information is important.
Kimberly and Serbrina are especially busy lately with captioning so we are appreciative of the time they spent with us. In our current podcast, they talk to us about quality captions and their upcoming project which will improve captions…and they need our help.
Chelle: This is how bad my hearing is – I’ll be watching a movie and reading the captions as usual. My husband will come in and ask me why I’m watching a movie in a foreign language. I had no idea they were speaking a foreign language. To me, all dialog on the TV comes across garbled. I cannot watch TV without captions.
My husband likes to watch the news. I read the captions. When the news goes live on certain channels, there’s no captions which completely leaves me out. I get up and leave the room, it’s not inclusive. Sometimes, the captions are so far behind during certain live shows, I can’t get the full transcript before commercials come up and I lose the last little bit. This is when I use my wifi based assistive listening system from my good friends at Listen Tech. When the show is live, they generally face the camera so I can use lipreading too. The captions become backup.
Captions Sometimes Lag Far Behind
During our October Talk About It Tuesday monthly chat, someone else brought up television captions and the lag. This can be a technology issue, Julia explained. Sometimes it’s captioning going through different kinds of technology before it’s presented on the TV. It can be the cable box. There’s no real criteria for consistency between TV stations and our televisions. For no captions, someone at the TV station probably forgot to flip a switch.
We can make a difference.
Serbrina tells us during the podcast, we can make a difference in our own cities by staying on top of our local TV stations. There are pockets of stations in the USA who do a good job with captions, even though they aren’t in the top 25. (The top 25 have to have live captioners.) It’s because the Hard of Hearing and Deaf community members are actively contacting the stations about caption issues.
Last weekend, I had a friend approach me about a recent Utah governor’s address on TV not being captioned. She and her husband have started to use captions more often. She said they had an American Sign Language (ASL) interpreter but there were no captions. Why, she wanted to know. The Deaf community have been more firm with their communication needs than we have. We can learn from them.
We need to follow up with the TV stations who are not providing captions. Each station has a caption assistance page (it’s the law to have captions). I keep my most watched local TV station’s “caption assistance” pages on my phone. We can call them, email them or fill out their contact page. I’ve let stations know what the problem is and I’ve also complimented another station on providing great captions. When it’s a glaring problem, I get on my local HLAA email list and tell others to tune in and write to the TV station too. I told her next time she sees something like that, let me know and I’ll spread the word. Sebrina is right, the more of us who do this, the better captioning we get.
Hearing Parnters Can Help
Julia: Quality captions help everyone. If you’re a hearing partner, odds are the captions are on all the time. I know at our house they are. My guess is that you are using the captions more than you realize. I do. When they are poor quality, whether the program is live or pre-recorded, it’s distracting and it drives me nuts!
But, as a hearing partner you just have to put up with it, right? Wrong.
I encourage everyone (HoHs, hearing partners, ANYONE who uses TV captioning) at home, in a bar or restaurant, at work…ANYONE who may want to use or needs to use captions at a future date, (come on now hearing loss can happen to anyone) to get involved. When local stations hear from their local viewers they take note.
During a local news broadcast you might even see an advertisement about a local store who is credited for sponsoring the closed captions. Drop by that local store and let them know captions matter and let them know if it’s quality captions that they are sponsoring.
Change happens when we speak up together.
Call to Action!
Kimberly Shea: “The first place we need to start is making a record. We will gather video data and samples from all over the country. The Task Force will evaluate each video against a metric system that is designed for captioning. This will address the quality, and the usability of captions for consumers. This has never been done before.”
Global Alliance will have a call to action soon and you will see Hearing Loss LIVE! sharing it.
The more of us with hearing loss helping, the better captioning will get.
Join Global Alliance Speech to Text. Together we make a difference.
Did you like this blog? Check out the podcast we did with Jen Schuck of Global Alliance earlier this past spring.
Join our twice a month newsletter by registering on our events page. (Scroll down a bit.)
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We have been bootstrapping it, starting Hearing Loss LIVE! from scratch. We keep many of our services free to those in need. Our paid services are building and we will be offering more classes soon. Until we are completely on our feet, you can support us at Buy Me a Coffee and by joining Patreon.
Chelle: This is our 40th podcast! It’s been fun making them and seeing where they go. We’ve highlighted hearing loss and its related issues and strategies; spotlighted community members for inspiration, and will continue to do so.
I love the connections we’ve made.
This Past Year
We hosted a free, monthly event called Talk About It Tuesday (TAIT) with human generated captions (CART) so everyone can participate.
We’ve met some good people through TAIT and got to meet one attendee in person thanks to our travels to and from the SayWhatClub convention.
We offered a free workshop before the holidays to help people Conquer Their Next Family Gathering.
We’ve also had free workshops on Family and Self Advocacy for May’s Better Hearing and Speech Month.
We tested sensitivity training for a business to clear up misconceptions about the Hard of Hearing. It was well received.
We’ve given free presentations for hearing loss support groups on how to request CART and self advocacy.
All our podcasts are free and accessible with captions, that’s a lot of work thanks to Julia. She makes sure all we do is accessible with captions. We want to lead the way with captions.
Lipreading Concepts Class
We started the Lipreading Concepts classes this year (new classes starting next week) which has already helped several people be more proactive with their communication. This is the only thing we charge for so far. It is a minimal charge, $50 for 8 one-hour classes. Soon we’ll have a Patreon channel going with extras from our podcasts.
Over the next year, I look forward to narrowing our focus down to self advocacy at a grassroots level. Teaching people how to communicate, how to get the accommodations they need. Reaching the Hard of Hearing as a whole to let them know there are a lot of accommodations available, and more of us need to request them so our communication needs are better known.
The Funding Question
This question popped up more than a few times this last year, why are we an LLC instead of a nonprofit? Because we want to do it our way. We didn’t want a board telling us what to do. We also didn’t want to be boxed in by bylaws so we went the LLC way. Even in nonprofits there are membership fees, convention fees, fundraisers. We could have gone the nonprofit route, we have years of experience with nonprofits between us. We could have paid ourselves that way too. Being an LLC is going against the current grain but it isn’t all that different.
We’ve bootstrapped the whole way through. We recently started some crowdfunding and some of you have already helped. Thank you! We want to go another year; then, another sharing what we have learned on our journeys so you don’t have to wait as long as we did to be more successful with hearing loss.
Happy Birthday to Us!
Michele: Can you believe it’s been a year?! Yes and no. Time is a great contradiction, passing slowly and at top speed all at once.
This past year has confirmed to us how hungry Hard of Hearing (HoH) people are for information that will help them live fully with hearing loss. We’ve helped people learn to be better self advocates and to find their confidence to speak up for themselves and their needs.
More work needed for HoH Accommodations
Speaking of needs, many have no idea what they need or what is available to them in the way of accommodation. Helping people with hearing loss define their needs has been a big part of what Chelle, Julia and I have focused on since last September.
At its heart, hearing loss is a communication barrier. Communication access, and the accommodations that provide it effectively, has been another big focus of ours. If the HoH want businesses and organizations that serve us to include us, the best way to educate them is to advocate and ask for what we need. I’ve been working hard on that in my own community in hospital and medical settings. I’ll be giving presentations on hospital communication access later this year.
Equal Access to CART
CART has been a big focus of Hearing Loss LIVE!, and that’s no surprise, as Julia is a captioner. With a profound hearing loss, and being a lifelong lipreader, CART is the most effective communication access accommodation for me and many others. We are working to help start a movement that will grow the CART industry—there is a shortage of CART providers—and to spread awareness among the HoH community, those who organize live events, and businesses. Many have no clue about how to request it or how to go about providing it for those of us who do not communicate via sign language. Quality, on-site, speech-to-text services should be available all across the country, not just in larger cities. We will continue to focus there, because over 95% of people with hearing loss use spoken language to communicate. Communication access keeps us connected! IT IS EVERYTHING!
“If all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest” ― Daniel Webster
We are Going to Dig In
Julia: I am hoping this is one of many anniversaries to come. There is still so much work ahead of us and I’m ready to dig in and get more folks in the KNOW!
Whether you’re new to hearing loss or an old pro—or maybe you are still in denial—there is something here for you, your family, your friends and your place of business. In fact, I think everyone should get in the KNOW! Before they need to know. I cannot stress enough how this has improved everything about my journey as a hearing partner.
Our goal will always be to give back to our HoH community and their hearing partners as much as possible but we need your help.
We have many ways you can help us:
Patreon: Get a look at some of our unseen videos. There are hours and hours of hilarious outtakes, serious discussion about hearing loss, thoughts about podcasting and more. Monthly content starts at $3 a month. That’s only $36 dollars a year.
Buy me a Coffee: Buy one or all of us a coffee! Like a specific blog or podcast? Want us to take on a subject? Let us know.
Join our Lipreading Concept Class: It’s only $50 dollars for eight weeks! This class is taught by Chelle, Michele and Julia. All three have years of experience with what lipreading is and what it is not. We believe the best way to take this class is online/in person, because there is always time to talk about current real life experiences, strategies and hearing loss. This class is built for hearing friends and family, too. Encourage them to get in the KNOW! about how lipreading and communication go hand in hand. Space is still available in all four of our classes starting September 7th.
Lipreading Concepts Class in Video
We also have a recorded version of our Lipreading Concepts class.This is for those who aren’t quite ready for group settings. Also, this is a great gift to share with a hearing friend or family member to help them learn more about hearing loss and lipreading.
Subscribe to our E-news: Our E Newsletter comes out twice a month. It’s chock-full of information and fun facts. It contains Zoom links for our events like Talk about it Tuesday. We share our newsletter list with no one.
Share a testimonial with us: Let us KNOW what Hearing Loss LIVE! means to you. Subscribe to all our content. And above all else: Share, Share Share. Share with your friends, your family, your support groups, your doctors, your coworkers and your employer.
Let’s get everyone in the KNOW!
If you enjoy our content and find it helpful, please consider donating so that we can reach more people with hearing loss to help them help themselves.
Watch our companion podcast on YouTube channel. Our podcasts available in audio format on BuzzSprout with a transcript. You can also find us on Spotify, iHeartRadio and other platforms.
Let me give you a taste of a hearing loss convention. Julia and I went to the SayWhatClub (SWC) convention August 10th-13th in Nashville, Tennessee. We believe everyone should go to at least one hearing loss convention. You get to experience Hard of Hearing culture. What does that mean?
Hard of Hearing Accommodations
You have the accommodation you need to understand everything that is said. They put in temporary hearing loops for those with telecoils in their hearing aids. (*Ask your audiologist to turn on the telecoil program before you go. Make sure it’s a dedicated telecoil program. About 70% of hearing aids have a telecoil.) If you don’t have telecoils, it’s okay because there’s also a human providing live captioning as we go. (Called CART, Communication Access Real-time Translation.) Our human providing captions was Julia, who also sponsored some time through her CART business.
At conventions, you make connections with people. People who are more experienced and can answer all kinds of questions. If they don’t know, they know someone who can. Because most of the attendees are Hard of Hearing, we know how to talk to each other and people are patient with repeats. Knowing what it feels like being left out, they are usually careful to make sure everyone is included.
Conventions start with a welcome party. This is where you find old friends and make new friends. The SayWhatClub has a theme at their welcome party, this year they told everyone to wear a music t-shirt. Somehow I missed the memo. Thankfully another attendee brought extra t-shirts and let me borrow one for the evening.
When the welcome party ends, we spread out to either the hotel bar or take on the city. Come on, we’re in Nashville so let’s explore! We found Printers Alley and a bar with a live band. It was loud but the group I was with knew some form of sign language and we lipread too so we got by. We all help each other with signs as needed.
We started the workshops. At the SWC con, give the first workshop to sponsors. Each sponsor had about 10 minutes to speak. Vendors help fund the conventions we love. They bring us knowledge and technology. Some are Hard of Hearing themselves. Here’s the sponsors this year:
Yours truly was sponsor as well, Hearing Loss LIVE! and we talked about our Lipreading Concepts classes coming up. Vanderbilt University Brain Development Lab – They are studying how D/HoH children learn. Here is their project.
We also had Listen Technologies as a silver sponsor and Cochlear though neither could show. Thank you vendors for helping make this convention possible!
Hearing Loss and Mental Health
The next workshop was Robin Nobling with NAMI of Davidson County. Her talk was titled: Got Stuff? “Not a single person gets through life without a period of anxiety, depression, fear, grief, anger.” Those of us with hearing go through all those emotions well. She encouraged us to unpack our ‘stuff’ and move toward acceptance. What I got from it was that we should talk about it and connect with peers.
Our last workshop of the day was with Cynthia Moynihan, a hearing loss advocate for 30 years who gave us Hearing Loss Empower Hour. She shared some of her challenges from over the years with us. “Why me,” she used to ask. “Because I have the opportunity to learn and give back.” She finds a word to focus on each year, this year’s word is “opportunity”. She’s found plenty of opportunity. She warned us against fitting into a mold, accept and embrace our uniqueness.
The SayWhatClub also has daily, accommodated activities. That night we all met at the Wildhorse Saloon to learn line dancing with captions and sign language! Captions thanks to Julia and the ASL interpreter was provided by Bridges for the Deaf and Hard of Hearing.
Are you tired yet? I was but it’s worth it. I love hanging out with my tribe.
Day 3 Friday, August 12th
Friday’s first workshop was with Nancy Denning-Martin & Mike Helms of Bridges for the Deaf and Hard of Hearing. It was titled Advocating for Big Change. For those of us passionate about advocacy, this was informative! Nancy and Mike talked about creating change on the “micro level” which is family, friends and people you meet day to day. There is also the “meso” level of advocating which is things like churches, schools and other groups. Last, there is the “macro” level which affects change on a larger scale; politics, legislation, policy. Samples were given of each category.
The second workshop was:Jourdan Holder AuD, the director of the Cochlear Implant Program at Vanderbilt University. She gave us: Hearing Devices, An Update on Technology, Candidacy and Outcomes. She gave us a lot of information about cochlear implants. They are working on shortening the electrodes to have a better chance at leaving the remaining hearing. This is going through the FDA process of approval.
Our last workshop was with Peter Hodes, Introduction to Tai Chi: Movement for Health, Balance and Relaxation. He led us through a series of tai chi movements, showing us how to breathe through them. He encouraged people to do what they could and no more. Pain isn’t the answer here. Use a chair or a table as needed. He made us laugh a lot. For many of us, wit was the first time trying tai chi.
The afternoon activities were a tour of the Grand Ol’ Opry backstage, Madame Tussauds Wax Museum and then attending the night’s show at the Grand Ol’ Opry.
Day 4, Saturday August 13th
Our last day is dedicated to afternoon activities in the downtown area of Nashville. They went to the Country Music Hall of Fame to attend the Songwriters Sessions Bonus and tour the Museum there.
It’s banquet night! The banquet was sponsored this year by Safe N Clear. Safe N Clear gave away a box of masks with a window, one box to each table. They also provided each guest with a mask to use.
Her dad had a hearing loss while she was growing up so hearing loss was no big thing. Her own hearing loss was undetected for many years because they thought, “she just wants to be like dad.” In a high school physics class, they were working with different frequencies and that’s when her hearing loss came to light. Still she considered it normal and blew it off. It wasn’t until college that hearing loss became hard to blow off. She didn’t know about accommodations so she “scooted by”. In grad school she was more upfront about her hearing loss and they let her record classes.
As a meteorologist/tv host, she had to get an ear piece. She was fitted for that at a hearing aid place. That was her first real hearing test. Up to that point, her coworkers thought she was unfriendly because she didn’t always answer them. One confronted her about it and that’s when Meaghan let her know she was deaf on one side and had a hearing loss on the other side. That helped clear the air and that coworker became one of her champions.
Along the way she was able to get her parents to buy a hearing aid. That was all they could afford. She was amazed at how much she could hear and what things made noise. However, it was too unbalanced having only one so it got put away.
Three years later she was told about the state vocational rehabilitation program by a new audiologist. The VR program was willing to pay half of the hearing aids and she wanted them so much she was willing to go in debt to pay the other half. When she went in, they gifted the other half to her because they knew she would go on to do good things. She said she sat there and cried.
Last year she came out about her hearing loss publicly posting a picture of her holding her hearing aids out. The next day she woke up to a thousand comments, receiving encouragement. Many parents of kids wrote in to say it helped their kids know they do whatever they wanted. She appeared on Good Morning America with this story. Shortly thereafter she wrote a children’s book based on the comments. Once she made her money back from the book, 100% of the funds goes to the foundation she created.
The Heart of Hearing
The Heart of Hearing Foundation was created to help others in need of hearing aids. Right now it helps people within in the Nashville area but she’d like to go nationwide and help many others. Her main goal is to help the working age people, 20-45, to get hearing aids. These people need hearing aids to keep working.
“When you finally become okay with who you are, you don’t realize how many people you are going to bless.” A lot of heads here nodding at the convention. Hiding hearing loss is a lot of work. When we become more about about it, and what we need to communicate, the easier it gets. We touch many lives and we can make a positive impact.
Grow your connections. Attend a hearing loss convention.
Julia and are looking forward to attending the Association of Late-Deafened Adults (ALDA) October 19th-23rd in San Diego, CA. This too is a fun convention with lots of great people and information. ALDA is famous within the Hard of Hearing community for their Karaoke Night. Let’s sing our hearts out because we can’t hear anyway! Just have fun.
Join our September 6th Talk About It Tuesday at 6:00 PM MST to learn more about either convention.
We are bootstrapping it and started Hearing Loss LIVE! with our own funds. We keep as much of our services as we can free. There’s two ways you can help us. You can share our podcasts, blogs and events. Or you can Buy Us A Cup of Coffee.
There is a chain of command for requesting accommodations at work. Do your research before making the request, check in with your tribe—peer support groups for Hard of Hearing [HoH] come in all forms now—to ask what they have tried and how it worked for them. Include options in your request and give as much information as you can about possible accommodation(s) to help educate your employer before they do their own research. When you’re ready, start with your supervisor who will go up the chain of command from there. Remember, it’s all in the asking. Be as polite as possible and true to yourself and your needs.
Chelle: There are so many accommodation options for the HoH these days. Unfortunately, most of them aren’t well known to either the employer or the employee. Employers are required to provide reasonable accommodations. What is reasonable? Is it what the employer decides or what the person with hearing loss decides? What it comes down to is what do we need to be successful in our job?
For myself—it’s different for everyone—I’ll try what they suggest and work my way up. I document as I go sharing reasons when and why something didn’t work. Also, I share what works.
Here’s a scenario from my last job. I worked in the state Deaf and Hard of Hearing center and they were great about providing the accommodations I needed. I was the first person to request CART (live captioning) consistently. At first, they forgot to schedule it half the time. They told me it was part of my responsibility to remind the office manager. I started looking at my calendar the last week of each month and listed all the meetings I’d like to have CART for the upcoming month. It taught me to be proactive with my accommodation.
We had a strategic plan meeting where equality and inclusion were embraced. The Deaf staff stepped up in making sure CART was provided. While CART is the gold standard, there is often a two hour minimum requirement in hiring CART. The staff scheduled CART for one-on-one, small, or side group meetings. Awesome, right? We were all learning to accommodate each other.
However, some meetings would be forgotten, or were only 15-30 minutes. There would be an hour and a half of paid CART unused. Waste drives me nuts so I wrote up guidelines on what is reasonable sharing in a document with the staff.
CART vs ASR
I need CART for staff meetings. Always. I need that information and can’t guess at it, it’s my job.
I need CART for any meeting that’s an hour or more.
I can do the short, casual meetings with ASR (automatic speech recognition) that are under an hour. It has to be Google Meet because their ASR (automatic speech recognition) is better than Zoom.
It has to be a group of 5 or less. If it’s more than 5 people, CART is preferable.
Michele: At sixteen, working as a waitress was a struggle during peak hours when the noise level was deafening. After high school, I worked in office jobs—bookkeeper, legal receptionist/secretary—where I was required to answer the phone, take dictation using shorthand, and transcribe audio from cassette tapes. Yikes, why did I think I could do those jobs well with hearing loss? Taking phone messages was torture. Meetings and transcribing audio were a nightmare. I missed things and made mistakes, and it made me feel incompetent, which wasn’t true. I simply couldn’t hear as well as I needed to for those jobs.
1st Accommodtion Request, Flexibility
My first accommodation in the workplace was with a finance company. I disclosed my hearing loss in the interview and was hired. My employer had a volume controlled telephone installed for me. As my hearing loss progressed, I offered the solution that I would manage fax intake in exchange for being taken off telephone rotation—not a huge deal, as we were an email-driven company. I was grateful that my manager was agreeable and flexible, though some saw it as special treatment.
Even with a flexible manager and boss, I encountered others who were the opposite. Example: During an office remodel I requested that my cubicle be configured so the entrance was visible from my desk to alleviate being startled by people approaching me from behind. “No, that’s not possible,” was the answer. I didn’t know that I had the right to push it further.
Using State Services
I left the finance company to move to another state. Looking for work, I was introduced to the Minnesota Deaf and Hard of Hearing Services (DHHS) office by my CareerForce rep, where I qualified for job seeker services. I had no idea that such agencies existed or about any of the accommodation available to the HoH.
Contacting your state agency to see if they offer workplace training for your employer and coworkers is a good idea. They also should have equipment and technology for you to try. And remember, one size does not fit all. You may have to explain to your employer that what works for someone else with hearing loss might not be the best solution for you. Having DHHS in your corner as a co-advocate can help assure employers that there are solutions to help people with hearing loss perform their job well.
Employers Getting in the Know
Julia: Over the years I have heard all sorts of horror stories about accommodation requests going right and wrong.
When it failed:
The business didn’t know what accommodations were available and refused to find out what could be tried.
The employee didn’t want to make a fuss.
And when it went right:
The employer worked with the employee to find the correct reasonable accommodation(s).
The employee knew they needed accommodation(s) and may or may not have known all available tools. And was proactive with requesting accommodations.
Start with knowing your rights as an employee. Be proactive by researching and reaching out to others on what they use at work. Our Talk about it Tuesday is a great place to do this. On our Glossary page we have an organization listed, JAN, Job Accommodation Network. They have great online tools that can help employees and employers with respect to accommodations.
Businesses: If you know and understand ASL accommodations for an employee. Awesome! You’ve met 1% of the hearing loss community needs… Now here is what else you should be able to say you know about:
If you are able to put a check in each of the boxes above, thank you for being a proactive employer ready to meet your employees every need. If not, there are many places that offer education with online CEUs. And, if you want to understand more about employees with hearing loss, sign up and meet with us here at Hearing Loss LIVE!
Changes Can Be a Good Thing
Sometimes employers are resistant to providing accommodations and you might have to push or make your request higher up in the chain of command. The ADA is on your side. However, we don’t recommend beginning the process in a threatening way. Give your employer a chance to come through, help educate them when necessary, and use the services available to you and your employer to arrive at solutions that work for you both. Making changes can be a painful process, but it’s a good feeling when it all comes together and you get what you need for optimum performance in the workplace. Remember, you aren’t just helping yourself, you’re making a path for others who will surely come after you.
View our companion podcast here. You can also find us on Spotify, iHeartRadio, BuzzSprout and more. Search for Hearing Loss LIVE!
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 serviceson 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
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.
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.
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: 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.
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?
I need a timely appointment with Derm.
I need a telehealth appointment with Gastro before my colonoscopy.
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.
“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.”
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!