Are Hearing Loss & Deafness Sometimes Like Apples & Oranges?

Providing accessibility accommodations that work for both the Deaf and Hearing Loss communities can be a challenge. This is clear to anyone with a hearing loss who requested captioning but was provided with a sign language interpreter instead. For most people with hearing difficulties, including me, a sign language interpreter provides no assistance.

But as I learned at an interesting panel discussion hosted by the Museum, Arts and Culture Access Consortium (MAC), a group whose mission is to promote access and inclusion at cultural institutions in the NY metro area, the reverse is also true. According to a Deaf panelist, captioning is not helpful for many members of the Deaf community, especially school aged children under the age of 15.

Communication Means Different Things To Different People

The panel discussion, entitled “Mindful Communication 2.0” was a follow up to a MAC sponsored event the prior year which discussed the language of disability, including its evolution from a medical model (i.e., hearing impaired) to person first language (i.e., a person with hearing loss) to identity first language (i.e., deaf). It is a complex subject and one that continues to evolve, especially for people with hearing loss.

When I write or speak about hearing loss, I typically avoid medical model terms like “hard of hearing” or “hearing impaired” and emphasize person centered language like “people with hearing loss.” I find identity first language harder to use because the term deaf can easily be confused with Deaf (deaf with a capital D), which implies a cultural identification and the use of sign language that are not part of my life experience.

Accessibility is becoming increasingly important to cultural institutions, but there is still much confusion about the best way to provide true access, especially for the broader hearing loss community. Part of the problem is that communication means different things to different groups. For the Deaf, conversation is fully visual through signing or lipreading, while for people with hearing loss it is a combination of spoken language and visual cues, often in different degrees for each person.

Making Venues Accessible for People With Hearing Loss

The follow-up panel aimed to provide specific guidance to museum operators about how to improve accessibility efforts specifically for people who are blind, have hearing loss, or who are Deaf. It was an interesting discussion filled with good tips that are applicable for a variety of settings, even virtual ones.

The main take away for me was that while it is logical to expect a certain level of accommodation from any venue, we must take equal responsibility for the quality of our access experience. Effective communication is a two-way street.

Other tips from the panelists are below. Please share your ideas in the comments.

1. Do your research.

Consult a venue’s website well before visiting to see what accommodations are available and to determine what help you will require to enjoy your experience. If you are interested in a particular exhibit or event, make sure to mention that when contacting them. The more preparation you do, the more smoothly your visit will go.

2. Request accommodations well in advance.

The more time you give a place to prepare for your visit, the more likely it is to be successful. At smaller venues, you might be the first person to ask for C.A.R.T. or other accommodations. Expect to educate staff about your needs and what options are available to them. You may need to follow up several times to make sure they are getting things right.

3. Be as specific as possible in your requests.

Detail the type of technology you require including whether you use a t-coil or blue-tooth to connect your hearing aids to other devices. If a sign language interpreter will not help, state that. The less you leave up for debate, the more likely you are to have a successful experience.

4. Provide feedback to the venue.

Let staff know how your experience is going in real time, especially if adjustments are needed. At the end of your visit, thank everyone who provided assistance. Follow up with a sincere thank you note highlighting the positive aspects of your visit and suggesting any further improvements. Sharing your appreciation for a job well done shows staff that providing accessibility is highly valued.

5. Refine your process.

Ask the venue what you could have done to make things go more smoothly. Should you have contacted them sooner? In a different manner? With a more specific request? Their feedback will make your next outreach even more successful.

Readers, how do you prepare for visits to museums and other venues?

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32 thoughts on “Are Hearing Loss & Deafness Sometimes Like Apples & Oranges?”

  1. CART is so expensive. To provide this service is a great expense to some companies , and I have at times felt uncomfortable even requesting it .

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      I understand how you feel. It is hard, but we must learn to feel that our ability to hear is a requirement protected by law in many situations rather than a bother. Personal speech to text apps can also work well for smaller venues. Thank you for sharing your thoughts.

  2. Outstanding points about the “two-way street”. It is up to each individual person, who has hearing loss, to find out what accommodations (if any) are needed and then, if accommodations are not in place, to request them. I think that your specific points are spot on. Thank you. Makes total sense.

    Of course, it’s also so important to say, “thank you” to the people who work at whatever venue is chosen.

    RK

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Very true. In most cases, everyone is trying their best. It is a learning process. Thanks for your comment.

  3. Gina, Live CART captioning does cost each time it is provided. But, as Shari says, accessibility for us is a requirement of law. And, in my many years of advocacy, I’ve found that almost all companies (profit-making organizations) can afford CART, as can most established arts & cultural groups.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Thanks for sharing your experiences.

  4. I have always wondered why sign language was provided instead of captioning at government functions. And I’m confused why a person under 15 would have issues with reading words. I always presumed the Deaf learned to read as well as write. We need to request what we need but we also need to be aware of the costs to our towns/counties/states of these accommodations. I have a CI and a HA and rarely attend any meetings because it’s impossible to hear in the types of rooms they use. I have not requested anything because originally I was not sure what I could do. But there was always a sign language interpreter. Many people who attend meetings like this are seniors and beginning to lose their hearing. But the default accommodation is sign language. It is not only difficult for a hearing impaired person to hear, it’s generally difficult for everyone to hear in these environments. So why did sign language become the default? Maybe CART was not readily available?

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Great question. Maybe it is because the Deaf community has done a better job educating others about their needs. The hearing loss community needs to advocate for their needs as well. Thanks for your comment.

  5. Hello, I am wondering why captioning would be of no help to the Deaf community under age 15. If there are only so many $ to fund assisted listening methods/devices of any kind, captioning would seem to be the most universally helpful. The cost of C.A.R.T. services and A.S.L. interpreters are both very costly. We should keep requesting/advocating in positive and constructive comments, and also have our hearing friends and family do the same. Hopefully this will make these services more available and thus the “norm” and less costly.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      I was surprised by the comment about captioning by the panelist as well. Advocacy by our community will be key to making sure our needs are met. Thank you for your comment.

  6. I had CAPD. I t was very unsatisfactory, the words lagged behind speech and were often jumbled. itt didn’t speak “New England”. anyway I got rid of it. M y church has a system. It is wired to the ro om or something. we wear a device which is tuned to ones hearing aids. It is great
    .My main complaint is about when you have to call a help line . the person you speak with often has has a foreign accent, hard to understand, and they all speak very fast. I havse asked them to speak slowly and clearly but they do not seem to be able to do this. So then I have to ak them to repeat, keep saying “what?’ . It is a very frustrating experience for them and for me. their training for the job should include how to speak with the hearing impaired, it would be quicker for them in the long run if they would speak so we can understand the first time.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Sometimes you can access help via email as well. That can be much easier. Thanks for sharing your experiences.

  7. With respect to Nancy’s comment about calling a help line. It is not only the gabbled speech but with cell phones and even VOIP the line itself can be bad. We still have a copper line phone which is very clear which at least is better than a conversation with two cells. Phone operators can be taught to at least speak slowly and as a last resort I ask.them.to call on a better phone.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Good idea. You can also use a captioned telephone which would provide speech-to-text clues as well. Thanks for sharing what works for you.

  8. I liked how you said, “If a sign language interpreter will not help, state that. The less you leave up for debate, the more likely you are to have a successful experience.” Good point! I never thought to say sign language will NOT help! Thanks Shari.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Glad you found it helpful! Thanks for your comment.

  9. New subject. What ever happened to the “loop”? A wire strung around a room, convention hall, church, that would enable those who wear a hearing aid to pick up on what is being said over the speakers.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Loops are increasingly popular as well. This is a great option for people with t-coils in their hearing aids. Thank you for mentioning this important accessibility tool.

  10. Before I attend any museum, movie theater, or live performance of any kind, I always check out a site’s accessibility. I have done everything you listed above – for years. I advocate. I explain. I offer comments. Constantly.
    My problem, however, has been with people at these facilities who not only don’t have a clue about how assisted listening devices are supposed to work, but they don’t even know what they have available! Many don’t even care. They can hear just fine. What’s the big deal?
    An example: A year ago, we purchased tickets to a big-city musical at considerable expense. I verified everything I could ahead of time with staff and online. When we arrived at the venue, however, I found out that not only was the assisted listening device unworkable for me and my t-coils, but the person behind the counter had no idea how the thing even worked! Needless to say, the venue received a piece of my mind the very next day. It was then, and ONLY then, that I found out an unadvertised looping system was available – which I very well could have tried to use! Too little, too late, (The venue has promised me a better experience next time. provided they ever have another show I want to see.)
    My point? Employees at various venues, from managers on down to those working directly with customers, MUST be educated and trained on whatever adaptive technology they provide. They need to understand that hearing aids already provide volume; what we need is clarity of sound and seating that provides us with access to visual cues. They shouldn’t put all the burden on those of us who are already doing the best we can.
    PS: Your readers who have problems with customer call centers might try online chats, which often give you the option of requesting an email transcription of the conversation.
    Thank you for reading.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Thank you for sharing your tips. It is a constant education process.

  11. I too, am confused about the statement about Deaf children under 15. I had never heard that before. However, we do know that language development includes speech, reading and writing. I was told that many children who are immersed in ASL that becomes their primary language, tend to lag behind in reading skills. In fact, a teacher of Deaf and hard of hearing children stated that many, typically, do not read above the third grade level. ASL does not follow the typical grammatical pattern the English language does, so it cannot be written. It follows that some who are Deaf (culturally and dependent on ASL to communicate), may not have the reading skills others do. Many years ago when captioning was becoming available on TV, this argument was made repeatedly by Deaf groups that complained that captioning was not a universal solution. You do have to be a better than average reader to follow captions on TV or those provided via CART, C-Print, etc. It has nothing to do with intelligence. I doubt this relates only to those under age 15.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Interesting points. Thanks for sharing your knowledge on the subject.

  12. Since American Sign Language (ASL) is the first and primary language of Deaf people and ASL does not follow the grammatical and syntactical rules of spoken English, the assumption that ASL is English-based is incorrect. ASL is not English merely be put into signs. In ASL, lexical words like
    “is”, “the”, “to” are not used. There is no visual meaning to them. The pronoun “I” is not used but “me” is. I’m sure a linguist would do a much better job explaining this but suffice to say, this is a rather simplistic response as to why captioning does is not sufficient in providing access to many Deaf people.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Makes sense. Thanks for sharing this information.

  13. iseewhatyousay – I have been married for almost 35 years, have four grown children, and I'm a Mim (grandma). I began losing my hearing as a child (so that's why I always watched my Sunday School teacher pray when I was supposed have my head bowed and eyes closed), and for lack of having an advocate to help me navigate hearing loss, I figured out the world on my own by lip reading and using the other killer visual skills I acquired naturally. It was a unique education I wouldn't wish on anyone else, but I also wouldn't trade all that I've learned along the way. It made me who I am.
    iseewhatyousay says:

    That is the difference between the Deaf and Hard of Hearing (HoH) Communities-people who are Deaf routinely request the sign language interpretation they need, whereas most people who are HoH are reluctant to request, and are even unaware of, accommodations available to them. That is a problem that contributes to the wrong assumption that all people with hearing loss know sign language.

    Every time I have specifically requested CART, I have been offered a sign language interpreter as a first response. It is frustrating that very few people who are HoH request what they nee. CART is no more expensive than sign language interpretation, and the vast majority of the 466 million people in the world with disabling hearing loss need captioning in their first language. The HoH Community has to stop being reluctant to ask for what we need if we want to be as readily accommodated and recognized as the Deaf Community.

    Certainly, people who are Deaf should be accommodated in their first language. People who are HoH deserve and want the same. That is reasonable.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      I agree. Self advocacy is the key to getting the accommodations we need. Thank you for your comment.

  14. This was very helpful. The problem I have with self advocating is the people that don’t listen to my request. I am HoH individuals and just because I wear hearing Aids does not mean I hear everything around me. I get frustrated when people say you should be able to hear. Supermarkets, Dr. Offices and anywhere I request assistance. It is an ongoing problem. It time the establishments train better for Deaf and HoH individuals.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      I agree. Better training would help a lot. Until then, we must persist in doing the education ourselves. Thank you for sharing your frustrations.

  15. Thanks, Shari! As one of the panelists at the presentation, I’m delighted you are sharing one of my main points: access works best when people with hearing loss request specific
    accommodations. Taking responsibility for yourself and your needs gets easier every time you do it. Thank you for everything you do to
    share the “Ask” message.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Great advice Ruth! Thanks for all your advocacy.

  16. Very enlightening post and responses. I, too, often wondered why captioning doesn’t suffice for all people with hearing loss, including those who are deaf. Now I know. Asking for needed accommodations takes a certain amount of gumption. Here’s hoping those of us who need CART or ASL become less hesitant to make those requests.

    1. Shari Eberts – NYC – Shari Eberts is a hearing health advocate, writer, speaker and avid Bikram yogi. She blogs at LivingWithHearingLoss.com and serves on the Board of Trustees of Hearing Loss Association of America. She is the former Board Chair of Hearing Health Foundation. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story, it will help others to live more peacefully with their own hearing issues.
      Shari Eberts says:

      Gumption is definitely an important factor, but practice asking also makes it easier. Thanks for sharing your thoughts.

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