The Language of Disability: It Can Be Hard to Get It Right

Last week I went to a panel discussion organized by the New York Museum Access Consortium. There were four panelists representing different disabilities and a moderator from MAC. The audience was made up mostly of people from disability rights organizations and museum personnel.images

The evening’s topic was “Mindful Communication.” Avoiding hurtful or offensive language when talking about disability isn’t as easy as it sounds. “People first” is a generally accepted standard. To use hearing loss as an example, a person is not “hearing impaired,” because that suggests that the way he or she hears defines who he or she is. We prefer “people with hearing loss.” (For more on parsing terms for hearing loss see my post “Deaf, Hard of Hearing, Hearing Impaired? Be Careful What You Call Us.”) It took me a long time to realize that “hearing impaired” is a distasteful term to many with hearing loss – and I have hearing loss! So I’m relatively easy on others who slip up on the politically correct terms.

After the panelists introduced themselves, with visual descriptions for the blind in the audience, the moderator led the discussion with a variety of questions. I can’t do justice to the full hour’s discussion but a couple of comments stuck with me.

The panelists were asked what kind of language they found offensive. I expected to hear them say that casual ignorant slurs were hurtful. Instead, the answers were much more complicated.

Ansel, who has visible disabilities and uses a wheelchair, said he dislikes it when someone trying to be kind says: “God bless you.” He doesn’t feel the need to be blessed, and finds it condescending. But he doesn’t get angry. “If it makes them feel good, it’s okay.”

Nefertiti, who is blind, dislikes being called “amazing.” When she was growing up, people were always saying how amazing she was. “I was such an amazing kid just for getting up in the morning! It gave me a little bit of an ego.” She prefers to think of herself as “just a human being doing what I do. It doesn’t mean I’m amazing just because I’m blind.” Of the term “disabled” she said cheerfully, “I feel pretty abled.”

In the question and answer period, one museum employee spoke about the difficulty of using correct and acceptable language in written literature like museum guides. “We’re working with a staff with a fear around language,” she said, to nods of agreement from others in the audience. Another of the panelists, Madison, suggested that staff take their lead from the community in question. Nefertiti similarly suggested listening to the person or group and then mirroring the language they use.

This brought the conversation back around to the panel’s topic: Mindful Listening. Mindful Listening is always important, as Nefertiti pointed out. If, for instance, a sighted person offers to help a blind person cross the street, and doesn’t listen to a polite “No thanks,” nobody wins: “The blind person is offended and the sighted person is baffled.”

Some of the more digressive responses were also insightful. One of the challenges Nefertiti faces as a blind woman was something I’d never considered. Being blind, she said, means that she misses the culture of body language. Someone will say “She’s a nice girl but….” Think of all the ways you could end that sentence without saying another word:  With a shrug (suggesting “… she’s not very effective at her job”), with a roll of the eyes (“…. the clothes she wears make her look like a slut”), with a shake of the head (“… not for me!”), with raised eyebrows accompanied by a shoulder hitch (“… who knows what she’ll get into next”). Etc.

A full transcript of the discussion can be found here. 

Coincidentally, this week Major League Baseball announced that it would discontinue use of the term “Disabled List” for players who were injured. The change came about after advocates for people with disabilities complained, according to the New York Times. The Times quoted Jay Ruderman, president of the Ruderman Family Foundation, which encourages greater inclusion of people with disabilities in society: “The disability community identifies with the term ‘disabled,’” he said “When it’s used incorrectly, when someone is injured, not disabled, that’s offensive.” He went on: “People with disabilities do not consider themselves injured….Someone who tears an A.C.L. is not permanently disabled.”

It’s true (usually) that they are not permanently disabled, but should they happen to use a wheelchair for a period of time, they are entitled to the same rights under the Americans with Disabilities Act as people with more permanent disabilities. Nobody ever said the ADA was restricted to those with permanent injuries. In any case, goodbye to the DL and welcome the “Injured.”

Most of my readers have hearing loss. I’d love to hear your comments about terms and comments that offend you.

For more about hearing health, my book “SMART HEARING.” will tell you everything I know about hearing loss, hearing aids, and hearing health. Available online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or NOOK.

Smart Hearing_Cover_highres

 

 

 

 

 

31 thoughts on “The Language of Disability: It Can Be Hard to Get It Right

  1. Katherine,
    You are right that, even for someone with a disability, it can be difficult to know what language to use to talk about disability. I personally dislike the term hard of hearing and rarely use it to describe my hearing loss. To me it is a stigmatizing term than minimizes hearing loss as a disease of the old and infirmed. As someone who began losing my hearing in my forties, “hearing loss” describes exactly how I feel about missing most of the conversation around me. It’s a daily struggle to accept and adapt to the loss of my hearing. “Deaf and Hard of Hearing” has become a commonly used term, perhaps for its convenience. But referring to me as a “person with hearing loss” would more accurately reflect my experience.

    Liked by 1 person

    • Pat,

      I agree, labels fall short. When I first began investigating how best to “label” myself, I was schooled (actually scolded) by a Culturally Deaf individual that I shouldn’t use “Hearing Impaired” because that lumped those who were Deaf since birth with those who had hearing and lost it-this person was hellbent on needing a distinction to our differences. Also, “Hearing Impaired” left people with confused looks on their face and didn’t seem to work well. When using “Hard of Hearing” the result often was being shouted at.

      I simply began saying what is true: “I need to see you speak, I’m a lipreader.” I do use “deaf” because in very many instances I am deaf, and I say “hearing loss” at times, but mostly I give a person a clear description over a label. That description might change due to the circumstance, but a description that leaves no question about me is best in any situation.

      Like

  2. Very interesting discussion! I never minded “hearing impaired”, it’s what I used to consider myself. After all, what’s the difference between being impaired and disabled? They both have negative connotations. But after I learned that it was not favored, I changed to saying that I had hearing loss and I understand how that’s better – instead of defining yourself with a specific identity you are saying that you have a certain condition. There seems to be a huge debate over Deaf with a capital D and lower case deaf and whether or not people with hearing loss are deaf. When an NPR piece about me was announced with a headline saying “deaf musician” a musician friend of mine was very offended, but I wasn’t. So I researched it before responding to his comment and there seems to be a lot of disagreement out there. The term I personally dislike is “hard of hearing” because it sounds so outdated. It conjures up an old stereotype of the irritable elderly relative who keeps saying “Eh?” all the time and gets on people’s nerves. (That’s a very sad stereotype – we all know why that stigmatized and low-status relative is irritable, don’t we?) A challenging apect of this is thst not everyone agrees on what we or they want to be called. For example within different groups I’ve heard that some people prefer Latino over Hispanic, Black over African-American, Indian over Native American, etc. I’ll be very interested to hear what others have to say.

    Like

    • Your feeling about “hard of hearing” is similar to Pat Krishnamurthy’s just below. I’d never thought of that. I think the “Deaf/deaf” issue is clear to those who know the code: Deaf with a capital D refers to those whose primary language is ASL. Deaf with a small d is those who just can’t hear much but don’t use ASL. But how many people outside of our world know that? Thanks for this interesting comment.

      Like

  3. I use an have used hearing impaired all my life, But, the hurtful things people do to test you. Like mouth the words, then when you ask, could you please repeat yourself..they laugh….Now, I tell them off.. its not a joke, its not fun. I cant tell you how many companies got rid of me because of my hearing disability . WHY?

    Like

    • I’m so sorry. Those people sound juvenile and mean. And the companies sound like they are breaking the law. But it is so much easier for us to condemn them in a forum like this than to actually get them to change. Are you in HLAA? That’s where I learned how to talk back to people who are demeaning and rude. Good for you for telling them off!
      As for mouthing the words, almost nobody can read lips without an auditory — or for those who use ASL — a visual clue. Only 40 % of sounds can be read — and that’s if you’re at the top of the class. Ask them if they can tell what you’re saying when you mouth words — maybe they’ll have the grace to be embarrassed. How hateful.

      Like

  4. I am a person with moderate to severe hearing issues. Geez it is hard to be correct with folks . I used to kid folks about speeding in chairs- yikes – I apologize. I never was offended with saying I am hearing impaired because I live with that . But it is not correct..
    now I am trying to be an advocate locally in my hearing loss group and outside for correct/ access for folks with hearing issues to go to doctors; commuvating by email or by sites like Penn Care . Phones are not workable. Every state should have text 911. That’s the commutative I am trying to push forth . I am learning and I appreciate that.
    Something I have wanted to get done was a site where all disabilities issues can be addressed/ known – and folks can access to find out Attorneys for the hearing iissues, housing for a independent living ,, Seniors with disability issues , etc. we need that badly .

    Like

  5. As always, thanks for sharing your experiences with us Katherine. You blog is always interesting. I’m an old timer who was on the first elected board of HLAA*. It’s been a fascinating ride! HLAA is a remarkable organization that everyone with hearing loss should be aware of.

    When it was founded in 1979, *The Hearing Loss Assn. of America (HLAA), was called Self Help for Hard of Hearing People (SHHH). Many people expressed a dislike for the term ‘hard of hearing’, and several surveys and discussions were held on that topic, but the name stuck until it was changed in 2006. Rocky Stone, the founder of the organization was loud and clear that the focus should be on ‘people’. That people with hearing loss were people first, and should not let their disability define them. Yet, that extra letter ‘P’, was left off the acronym SHHH. Why? The founders did not want us to be called SHEEP. (Probably a good move!) Anyway, this all became more confusing when disability groups started standing up for their rights and the movement that led to the ADA progressed.

    SHHH/HLAA emphasized that the word ‘the’ should not precede the defining term one chose to use. This was in sync with the majority of disability groups. We are not ‘the’ hard of hearing or ‘the’ hearing impaired. We are people who are _____________, whether it be hearing impaired, hard of hearing, partially deaf, etc.

    Meanwhile, the culturally Deaf population went on record preferring to be known as ‘the’ Deaf, because they embraced ‘Deaf Pride’, and preferred being identified by their deafness because they considered it a ‘difference rather than a disability’. Yes, it got confusing and it’s still confusing, especially when you write about it in a paper that will be read by the general public or try to explain it in a presentation. I am hard of hearing; my hearing is ‘impaired. I am deaf, but I am not Deaf, etc. When I explain my unique needs to other people, I usually tell them; “I don’t hear well, etc. Not sure that works better than any other explanation, but it usually gives me the opportunity to explain the technology I use and what I need from them to be included in a conversation. My personal opinion is that we get so hung up on some of this that we don’t have time to address the greater issues. 8>)

    Like

    • I agree with you about getting distracted from more important issues by squabbling about language. That’s one reason I loved the generous comments made by Ansel and Nefertiti — they both said of people who use language they don’t like, “If it makes you feel good,” that’s okay.

      Like

  6. I tell people at checkout counters that I don’t hear too well, as I’m moving closer to them in an effort to know what they are saying. It usually helps and they attempt to speak louder. If I still can’t hear them I shake my head No. If it’s something I need to know, they usually understand and make a greater effort to communicate.

    Like

    • My best result at the check out counter is this: “Hi, you need to know I read lips and when I’m looking away while unloading my cart or digging in my purse for my wallet I’m not going to hear you.” That information-packed sentence solves every problem! And, people really appreciate your leaving nothing to the unknown… it puts them at ease.

      Another one I use a lot at ticket windows for travel: “Hi, I’m deaf and read lips, but it doesn’t always work, so if you need to write down the information for me I’m okay with that.” I have a pen and paper with me always, but they usually use their own.

      I found that Katherine’s reply is so true, you have to experiment to find what works, and what works for me, won’t work for someone else, so make it fit your personality and needs.

      Like

  7. Great article! I was fortunate to be able to take part in a Sensory Loss symposium this past September at the Weisman Art Museum in Minneapolis, Minnesota, organized by artist Liza Sylvestre (https://www.youtube.com/watch?v=W5b8Se5Zvbo), an artist with hearing loss.

    People with sensory loss, sensory scientists, and artists discussed and investigated accessibility at art museums. It was very enlightening to learn from others with a different sensory loss than my own profound hearing loss. We found we were very accommodating to each other due to having a deeper knowledge from experience with our own barrier.

    I was also taken with how different the experience was for me-someone who had hearing and began to lose it gradually as a child, and who uses lipreading to communicate-and a Culturally Deaf woman who used sign language and didn’t use her voice. I had fewer issues, or maybe just different issues, because I much more experienced at communicating with hearing people than the woman who was part of the Deaf Community.

    The experience confirmed what I already knew: Mindful communication begins with a person’s (who has sensory loss) ability to convey, in a clear way, what someone needs to know about them, and their ability to ask for what they need in order to effectively communicate.

    Part of the symposium was an hour of viewing exhibits in small groups. You could see everyone trying to reason how they fit into the mix, and how to best to facilitate accessibility for all. It forced every person, even the sighted and hearing, to think on their feet, come up with solutions to include everyone (as much as possible), and to make the experience as inclusive as possible. You could see the lightbulb moments on people’s faces. I see some similarities in your experience.

    As to your question about what comments and terms we deem offensive… I learned a long time ago, you can’t get angry or offended by the well-intentioned offerings of people who lack understanding. Those moments are opportunities to educate, and we who live every day with a barrier have a responsibility to be mindful of how we present ourselves, and how we respond to comments and terms that fall short. I do that by simply saying what’s true in a thoughtful and insightful way.

    Example: I served as a political delegate at my county, district, and state conventions. I received many comments about being “brave”, and with each bid to move on as a delegate, I mentioned this, saying: ” Many here have come up to me to let me know how “brave” I am to participate as a delegate, and what I’d like them to know is that anyone with a barrier doesn’t see themselves as “brave”, they see themselves as “capable” and want others to see that as well. Because people with disability are capable.

    Like

    • Thanks for this very interesting comment.
      I particularly like this sentence from the end:

      “I’d like them to know is that anyone with a barrier doesn’t see themselves as “brave”, they see themselves as “capable” and want others to see that as well. Because people with disability are capable.”

      Liked by 1 person

    • Oooo, I especially love what you say here, ” I learned a long time ago, you can’t get angry or offended by the well-intentioned offerings of people who lack understanding. Those moments are opportunities to educate, and we who live every day with a barrier have a responsibility to be mindful of how we present ourselves, and how we respond to comments and terms that fall short.” Those are definitely words to live by!

      Like

  8. Katherine,

    Another point, that speaks to the diversity of a group that appears similar, is that if a person (in this case a staff member who is fearful of saying or doing the wrong thing) does not know how to accommodate someone with a disability, they should simply ask: “How can I best accommodate you, what do you need from me?”

    What is effective for one person with hearing loss is not effective for another. Simply ask how best to accommodate each person’s needs.

    Like

  9. I grew up with hearing loss diagnosed in the 50s but it was ignored so I learned to read lips and body language. In my 40s, I learned ASL and all my teachers were Deaf. I sent to a church for the Deaf for about a year and hearing, Deaf, deaf and people with hearing loss, and hearing people all attended. They used ASL and voice. I learned from the Deaf that they want to be treated with respect as to who they are, not what they are living with (Deafness, speech impairment, arthritis, etc.) They were patient with me and even asked me to voice things for them in public. That was so very cool for me.

    The main thing I was taught was “just communicate.” It didn’t matter how, just try. I asked more than one person why the Deaf community accepted me. The overriding answer was because I was direct/honest and I was trying to understand them as people. One person said they were offended when people watched them sign – that was like eavesdropping to them. I said that ASL is beautiful and hearing/HOH people are fascinated by it. That seemed to help them.

    In 2000, I became a reporter. I was 2 years away from my first cochlear implant. I had to learn how to interview people and tell them about my hearing loss. The main thing that helped them understand was when I said, “I can hear, but I can’t understand words.” The word “understand” got them and they got it. Then I would tell them what I needed: Please face me, talk normally, etc. Many had been misquoted by reporters and were hesitant. I turned my computer or paper and pen toward them and either showed them what I had typed/written or had them type/write. I never had complaints.

    Another phrase I used with others was, “I want to understand you, but I can’t. Could we go somewhere quiet?” or “Would you say that in another way?” I also started repeating back what I heard, “Did you say…?” Sometimes is was so funny what I thought they said, we’d laugh.

    I also have multiple sclerosis and had to go on SS Disability. I don’t like that word much. When I turned 66 and was considered retired, I called the Social Security office and asked if I was no longer on SSD. She said, “Oh, once you reach retirement age we no longer consider you disabled, but aged.” I didn’t like that either but I laughed – loud – and asked if that meant my MS would go away.

    We can get hung up on verbiage.. But if we show people respect, ask what they need/if they need and listen, things seem to go best. There is a difference between “listening” and “hearing.”

    Like

  10. One common theme I notice with some of the offensive language is that many of these individuals have a problem with being viewed as inspirational for just doing everyday things (getting out of bed, going to work, etc.). I get that.

    Like

  11. I have to admit to being a little baffled by the dislike of “hard of hearing” from your comments and others… I didn’t realize some people found hard of hearing to be “old fashioned” because it seems to be the generally accepted term when it’s being used by people who have always been hard of hearing (which might be the exact issue at hand here). If you look at a lot of groups that are deaf lead you’ll see the grouping “D/deaf, Hard of Hearing, DeafBlind” to include all or often you’ll see for the deaf and hearing written out to include both groups in a lot of state organizations too.

    I personally wouldn’t use “hearing loss” because I’ve never had it so how could I have hearing loss? I’ve always just been hard of hearing. Person first language is questionable. It tends to feel like people are avoiding saying someone has a disability and those of us who’ve always had one tend to prefer that people just stay it. I’m hard of hearing not a person with hearing loss.

    Like

    • I think we just all have to agree to disagree and be tolerant of other people’s wishes. I do use hard of hearing all the time, especially when I refer to “the deaf and hard of hearing.” I see nothing wrong with. I also say to people that I don’t hear very well and when they don’t seem to get that I say I’m deaf. That usually does the trick.
      Also interesting comment on hearing “loss” for someone who has never had hearing, so no loss. Thanks for your thoughts.

      Like

Leave a Reply to Dave Myers Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s