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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.”
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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.

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Advocacy Hard of Hearing Hearing Loss Misconceptions Setting limits

Get Out of Your Own Way

Written by Michele Linder

It is tempting to frame disability in the context of limitations. Certainly, Hard of Hearing (HoH) people face a communication barrier. That means they either find workarounds in situations where communication is a challenge, or give up and accept less out of life.

Getting hung up on what we can’t do is a natural tendency when we are going through the stages of emotional trauma that hearing loss forces upon us. However, we can choose to come out the other side a better person.

Fear is the vehicle for unnecessary limitations, and can rob anyone of a life well-lived. Having a barrier makes it easy to justify I can’t.

When others tell you that you CAN’T do something because of your hearing loss, it is your decision to accept or reject that limit. You determine what limits are acceptable, and those that are not. 

One thing I really love about Rachel Kolb’s TEDxStanford Talk, Navigating deafness in a hearing world is that she makes the point above so clearly.

Early in the talk, Rachel speaks about the limits that others tried to set for her when she was a child. Luckily, she had parents who taught her to believe in herself, and that challenges are not outright limitations, which led to her becoming a young woman who knew she had choices.

Rachel talks about can’t around minute 13:26: “…when I came to Stanford, I was shell-shocked by this college social environment… it was very easy to think, “I can’t.” I can’t have a normal social life like another young person. But over time I’ve learned one very important thing: I have a choice. I might not be able to choose what is easy for me or what is difficult. But I can choose how to use the abilities that I do have… And by embracing the choices that work for me, I’ve experienced many rewarding things as a result.” I took Rachel’s way of looking at life with hearing loss and made it my own, and it was life-changing for me.

My list of how I got out of my own way:

  1. STOP FAKE HEARING!
    When the information or conversation is important to you, you can no longer pretend that you heard what was said when you didn’t. If you continue to fake it when it matters, you are limiting yourself by letting learning opportunities pass you by.

    There will always be times when you resort to fake hearing, but it is NOT a productive skill in most cases and it doesn’t teach you anything.
  2. Do NOT accept the limitations that others try to impose upon you.
    As Rachel Kolb says in the video linked above (10:33), “I think back to that first experience, and I realize that I wasn’t the one who was limited, this other person was.”
  3. Teach yourself what you don’t know.
    If you have no clue how to tell others about your hearing loss or how to ask for what you need, experiment. Try out different things and find what works for you. And, remember, what works for you might not be the same thing that works for me.
  4. Say what is true.
    People with hearing loss share about the things that cause them anxiety—getting a haircut, ordering in a restaurant, etc.—and that’s a good thing. I often tell them, “Now tell the person you encounter in the situation exactly what you told me.”

    You can alleviate all of your anxiety by simply stating what is true about your hearing loss and communication needs upfront in every situation. Some might think, “Saying all of that is just too much,” but if it gets the results you want, what is the big deal?
  5. Be proactive and check your attitude.
    Stop waiting to react!

    When I became a better self advocate and started telling people what they need to know about my hearing loss and communication needs effectively, I realized that a lot of the problems I was having were my own fault.

    Example
    : From a social media conversation about face masks in a medical setting: Commenter 1: I am totally done with the mask mandate garbage… I wear a button on my mask that says, “Please face me, I read lips” and the receptionist talks to me with a mask on. She hands me a pen and pad of paper, and when I ask her, “How is that supposed to help me hear you?,” she presses some buttons and brings up a sign language interpreter on a screen. I tell her I don’t sign… I cannot communicate anywhere! Commenter 2: That sounds just like me. I am having the very same issues. It has gotten to the point that I only go out when it is necessary. 

    That is not to say that communication difficulties are not frustrating. They are. But having an attitude isn’t productive, and masks are going to be with us for a long time. 

    Society, especially those who deal with patients, clients, and customers, could be more aware of diversity and could use some sensitivity training. However, you can’t expect people to read your mind or to know how to communicate with them, so tell them what they need to know about you and your communication needs, and direct them.

    Here is my truth: “Hi, I am a lipreader, but masks wreck my communication. I don’t use sign language, captioning is how I access communication. Do you have a live captioning option? If not, you will have to write to me for me to understand,” I also might bring up an ASR (automatic speech recognition) captioning app on my phone, but I would rather give the medical facility the opportunity to provide a live captioning option first, as ASR apps can be inaccurate.

    Limiting interaction with people is not a rational solution, so why not learn how to tell others exactly what they need to know about your hearing loss and communication needs.
  6. Realize that you have more control and options than you might think.

Having a communication barrier is a big enough obstacle. Don’t be the stumbling block in your own path. Learn to accept and embrace who you are with hearing loss and put into practice good self advocacy and communication skills. It helps to be creative and flexible where those two things are concerned, and the only way you will find what works for you is to experiment; then, practice, practice, practice. When you start to get good results, you won’t believe how empowered you feel!

If you liked this post, try Job Interviews, HoHs Go Shopping and Traveling by Plane.

(No companion podcast.)

Categories
Communication Practices Hard of Hearing Hearing Loss Misconceptions

Misconceptions

Hearing Loss LIVE! talks a lot about the general misconceptions associated with hearing loss and the Hard of Hearing; here are just a few:

  • All people with hearing loss know and use sign language.
  • Hearing aids correct hearing like eyeglasses do vision.
  • Hearing loop technology is outdated.

However, there are many misconceptions that our family and friends, and even strangers have about us specifically.