In Shakespeare’s Romeo & Juliet, Juliet famously asks, “What’s in a name? That which we call a rose by any other name would smell as sweet.” She wonders how the name someone has can define them, rather than the characteristics of the person himself. This seems logical enough, a name is just shorthand for describing an actual object or state of being, but when it comes to disability, a name can take on significant meaning.
I recently attended a 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. I have been to a handful of their workshops and always learn something. This session focused on language and disability, and the importance of getting the words right in order to reduce stigma and promote conversation about disability. A very complex issue.
I share my take-aways from the meeting below. Please share your thoughts in the comments.
The language of disability is constantly evolving.
Historically, disability was discussed within a medical model. Doctors discussed people’s inability to do something that a “normal” body could do — whether that was walk, hear, see, or whatever. It was a “dis” ability, “dis” meaning apart or asunder in Latin. Sometimes derogatory words like “crippled” or “retarded” were used, perhaps from a lack of understanding. People with hearing loss may have been called “deaf and dumb,” especially if they had trouble with speech. The term “hearing impaired” also reflects a medical model mentality.
The medical model transitioned into person first language as in “a person with a disability” or “a person with hearing loss,” stressing that the person comes first and the disability second. This is the type of language I typically use when I talk or write about myself. This wording is often used in public documents, on websites, and by hearing loss organizations because it is respectful, but it can be wordy and cumbersome to use.
Recently, identity first language has become popular, for example, “I am disabled.” This assumes that the person part is a given and implies membership in a community of others with that same disability. Many of the panelists at the workshop felt empowered when using this type of language.
For hearing loss, identity first language is complicated by the Deaf community, which has defined Deafness culturally to include using sign language to communicate. For “deaf” people who don’t sign or who aren’t culturally deaf, the word doesn’t seem to fit, leaving us without a one word descriptor that accurately reflects our state of being.
Evolution in language makes it challenging to know what to say sometimes. One audience member commented, “It used to be okay to say visually handicapped, then visually impaired, then partially sighted. I don’t know what is right anymore.” Language often reflects society and culture, meaning change is likely the only constant.
What you call yourself may change as your feelings shift.
Many panelists noted how their own use of language changed over time as they become more accepting of their disability. Often their path took them through the medical model, to person first and finally into identity first, as they discovered a community of others like them. Seeing all the wonderful things that people with similar challenges to you have accomplished can be inspiring and jumpstart confidence in your own abilities.
This is definitely true for me. Before I came out of my hearing loss closet, I referred to hearing loss only when absolutely necessary, saying something like “I don’t hear well.” Now I typically say “I have a hearing loss,” or “I wear hearing aids.” Occasionally, if I want to have more impact, I will say “I’m a little bit deaf.” That really gets people’s attention, perhaps because deafness is seen as more serious. Because of the cultural associations of using the word deaf (Deaf), I find it difficult to use the term regularly — primarily because I don’t want to give a false impression that I use sign language.
There probably is no one size fits all solution for all disability groups and for all individuals within each group. Language is personal, and reflective of our own experiences and feelings about our disability.
Having proper language to use reduces stigma and fear.
Without the proper vocabulary, people are often reticent to discuss disability because they feel uncomfortable or nervous about offending someone. This makes disability a stigmatized unmentionable. When people know the right words to use, it makes it easier to have a conversation about disability. This makes it simpler to create work-arounds when needed and to provide a more inclusive environment.
Sometimes tone is more important than the words that are used. Many panelists felt that being treated with respect was the most important thing, regardless of what language people used. All wanted to avoid being deified as well. One panelist commented, “I am not a saint or a super human, I am just living my life. But don’t ignore my disability either. That is just not reality.”
Readers, what language do you use to discuss your hearing loss?
Connect with us on Facebook and Twitter!
Never miss a post! Sign up below for email alerts.
Shari, I use the same ones you use and I avoid ‘a little bit deaf’ because I don’t want someone to start signing at me as I don’t know ASL (yet). And just like your last panelist’s comment, I don’t want people to feel sorry for me, I just want them to respect my loss of hearing and take whatever extra steps are necessary so that I am included in the conversation.
Thank you for sharing your thoughts.
Here’s what really gets me…the “hearing world” does NOT understand “partial deafness”, or…”HOH”…they only understand, “deaf” or “hearing”.
It never ends…I’ll be with a group of people and they can see that I’m having a helluva time, understanding conversations, because of the cross-talk, room noise, bad acoustics, etc. Invariable, someone will ask, “Oh…so, how come you could hear him talk, over there, but you couldn’t hear her, over here?” Or, they’ll ask, how come you can hear the room noise, but you can’t understand what we’re saying?” Or…they’ll ask, “Why does the loud noise bother you…I thought that you said that you can’t hear very well.!”
Trying to explain anatomy and physiology and functionality, is like trying to describe the pain of childbirth. There are no words…besides…even if I do try to explain hearing loss to them, their eyes glaze over and they tune out.
So, i’ve told some friends that, for intents and purposes, I’m “deaf”. But, then, of course, when I did understand what they were saying, they asked the above questions.
Yes, all I want, is to be respected.
I’d love to be understood (in terms of what HOH really means). But, that’s like asking for the moon.
Maybe some day?
I totally get what you are saying!! I experience it a lot in my work environment, sometimes being seen as ignorant or dumb sometimes because of how varied my hearing/hearing loss is. And the majority of the people I work with are of the older generation (I am almost 30 but seem younger), and the response I get is overwhelmingly misunderstanding.
I do get the occasional person who does want to know more about when I experience & have gone through, and that take an interest in my hearing aids. Those people are encouraging & help me to not lose hope. But it’s the vast majority that I encounter that are frustrating, and sometimes hurtful.
I do feel that being HOH will always be an in-between world, so what can we do to turn it around for ourselves? This is why I love this blog and the people I encounter here!
Hearing loss is such a nuanced experience it is hard for others to understand, which can be very frustrating. All we can do is keep advocating for ourselves over and over again. Thanks for sharing your thoughts.
I have found I have to be careful when called to jury duty. I said I was hard of hearing and was told they would have someone to do sign language. I said I didn’t understand sign language and I was made to feel like I was retarded. Most still can’t separate deaf and hard hearing.
I agree. The language is very unclear. Thanks for sharing your experiences.
Same thing happened to me.
The court was completely unprepared for how to enable me to hear and understand conversations. I was sent home …this happened twice. After the first time, I got a not from my audiologist, explaining my difficulty..and, asking that I be excused from being called again. That was over ten years ago. I’m hoping that I do not get called again.
People on Facebook have written that there are some courts that provide CART. I was never given that option; nor, did I know I could ask for it.
Shari, this is the best discussion I have ever read about tagging our “condition”. I am constantly confronted with how to talk about my hearing loss. I’ve experimented with your “…a little bit deaf” and that sometimes gets the attention I need from others in order to understand them. Attention is exactly what I need in a group or even with a single person.
I completely understand @bubberonnie above. Her frustration is palpable. She describes us ALL at one time or another.
My partner-in-life, CA, and I were visiting old friends this past weekend. They know of my disability but I always have some difficulty there specially when the four of us split up into two conversations – a very normal thing to do. So I decided to have “The Talk” again. I explained what I needed and the visit went on for several hours quite successfully. Then I realized, “I’m tired of giving “The Talk”. I want my friends to remember and adjust. Automatically! Then the little guy on my left shoulder said quite loudly, “It ain’t gonna happen Bubba!”
Just like the person on cutches, without saying a word, defines her needs, we of the hearing disabled must from time to time give “The Talk”. We must verbally set the rules. The wheel chair, the crutches or the white cane all loudly set the rules without saying a thing. For us – It’s “The Talk”.
Jerry,
“The Talk” has not helped…long term. People have very limited memories..especially because my hearing loss is invisible.
That’s why I often wear a button, that reminds people to face me while speaking to me. It helps a lot.
With that button staring them in the face, they are constantly reminded that I am, indeed, not able to participate fully in conversations, when there is cross-talk, or when room noise and acoustics make it very difficult.
But, then, of course, at some point, the button becomes “white noise” to them and they forget, all over again.
I can barely communicate with my son and with his kids (who are ALL old enough to know better).
Yesterday, I confronted my son with, “So, what are you gonna do, when/if I become completely deaf?
Cochlear implants might not be a viable option for me.
I really need your help…I can’t keep begging you all to accommodate my hearing loss.”
My son said nothing. He just sat there, dumbfounded.
He has been in denial about what it means to be HOH…denial about the fact that his mother has been losing her hearing, for many years.
This problem has haunted us. It never goes away.
It’s becoming more difficult for me to even want to be with him, because he just doesn’t get it.
Is it any surprise that so many families have become splintered, when someone loses his/her hearing?
Sad, but true.
@bubberonnie – It is so sad to read of your situation. I don’t think, however, that your situation is that rare. Unfortunately your “in family” options seem limited. Support though is available here and also in other places on the web. I find real support on a propriatary forum run by Advanced Bionics, the maker of the cochlear implant I wear. The community there is tremendously supportive.
There are many other places where people with any concerns about hearing can find answers, support and other help. Here is a site that lists some of these.
https://www.hearinglink.org/connect/blogs-forums/hearing-loss-forums/
i am sure there are many more out there. Depending on where you live there may be real live groups that would welcome you. The thing is I would encourage you to be pro active and independent in your search for company that “gets it” and or online groups that by definition gets it.
Hang in there
Jerry,
You are preaching to the choir.
I’ve been active in HLAA for years. The people I met there, were and still are friends and I stay in touch with them.
In the country where I live, now, I created the first-ever-HOH-support group, for English speaking people.
I belong to many FB fora.
I just can’t handle my family anymore. They lack empathy…compassion…they don’t get it and they don’t want to get it. They think that I’m just acting “helpless” and I’m not trying hard enough.
Long story…suffice to say…it’s tragic.
I’m doing the best I can.
But, I will never be able to be close with them again.
That part of my life is over.
That is awful. Maybe his surprise at your comment will lead to change. I hope so for your sake. Hang in there.
It does get old giving “The Talk” over and over, especially to those closest to us, but it is necessary, so we do it. Thanks for sharing your perspective on this issue.
Shari. Thanks for your always useful blog!
Some further thoughts in my experience “using” hearing aids for about half of my 73 years:
Personally, I don’t say I “wear” hearing aids but rather that I “use” hearing aids. It may be subtle but I hope it connotes proactivity v passivity (eg wearing jewelry).
Although I now am severely HOH, I never say I’m deaf as a matter of expectation from the communications partner. When meeting someone new, i explain I am very hard of hearing, use HA, and cite benefit of face to face etc etc etc. Most often the other party says something like “I’m sorry” then faces me – at least until I need to remind again, noting I want to communicate and appreciate their willingness to help. More often than not, that leads to discussion about hearing loss issues… and someone they know with loss.
So much educating to be done!
Thanks for sharing these helpful suggestions.
Great article. I agree with the comments. People don’t get that I know they are talking but I am not getting the words.
It is hard to understand until you have lived it. Thanks for sharing your thoughts.
The old talk scheme does not always turn out the way you want.
With my hearing getting worse and my family is so far away. It isn’t hard to turn into a hermit and deal with your hearing on a personal level.
Dealing with the public, I go out get what needs to be done and get home. I have made myself socially disabled to a point. Sad yet scary.
Hearing loss is tough but please don’t give up. Isolation is never the right answer. Could you find a local HLAA chapter or similar hearing loss group near you? That might help counteract some of your issues. Good luck to you.
I no longer live near any HLAA group(s)..
I created the first-ever-support group, for HOH and/or deaf people, where I now live.
At first, people were reluctant to attend. They had NEVER received been exposed to such support. They just lived with whatever hearing loss they had and were at the mercy of their audiologist, who provided NO education, regarding communication strategies, technology, etc.
Some of these people are in their 70’s and 80’s…can you imagine living like this, with no support system in place? Very sad.
They are all very grateful for being able to now participate in this group. They have developed great self-advocacy skills and are no longer shy about asking questions, or about learning about new technology.
Some of them had NEVEr used a smartphone before…they were living with antiquated hearing aids, which provided very minimal amplification and/or noise reduction. Now, these folks are using bluetooth hearing aids, which are paired with their new smartphones…can you imagine?
It’s a whole new world for them…what a shame that there was nothing like this support group for them, for all of these years.
This is wonderful! Great job!
Yes Marren, if it’s only an old friend who can look you straight in the eye as she speaks to you. That would do it. Isolation is an invitation to dementia and worse. Just be where other people are, Find like minded souls to lean on. They’re there. Even is only on-line. Like here. Don’t go away.
There are also several Facebook groups, where HOH people share and help each other.
One of the other reasons that we isolate….we experience auditory fatigue. Straining to listen, being overwhelmed by noise ( environmental or speech), we just need to take off our hearing aids when we get home and hear the quiet.
It’s k8nd of like taking off our clothes and slipping into our pajamas.
If I’m not feeling well I don’t say ” I’m feeling a little dead ” .
So why do people who are Hard of Hearing say I’m a little deaf. If a person. Is deaf , they can’t hear. It should be simple .
The confusion in people shows when i say I’m deaf, they shout in my ear .
Unfortunately the language is not as simple as we would like it to be. Neither is hearing loss given its many gradients and variations. Thanks for sharing your thoughts.
As I stated earlier, the hearing world does not understand nuances…so, HOH means little to them.
They view us in black or white terms.
If we say we are HOH, or “deaf”, they tend to scream at me, rather than to honor my request to slow their rate of speech.
They don’t get it.
We can’t make them get it.
In my support groups, I present Yourubes, which demonstrate degrees of hearing loss.
That demonstration speaks volumes.
I ask support group members to show those YouTube videos to their families and friends.
That helps a bit, but there is so much more to explain …if only they are receptive.
What are some good FB communities to follow? I see this mentioned in a few comments, and had never thought to look for some.
Go to FB and search for HOH support groups…deaf groups….hearing loss, etc…you will find many support groups…
There is an HLAA group..
There is a Canadian hearing loss support group.
One very good support group is HLAA UTAH.
Another is HLAA Morris County, NJ
I have a copy of my audiogram thresholds superimposed on the speech banana in photos on my iPhone. Easy to explain to people about the sounds I have difficulty hearing. Also have copies of my https://bliss2hear.blogspot.co.uk/2017/01/making-sense-of-speech.html to hand if further clarification is needed. Definite wake up call for many.
Love your blogposts. Shari.
What a great visual to use! Thanks for your comment and for the work you do for people with hearing loss.
Thank you, Shari. I find that many people – including many in the medical profession – find it hard to appreciate that though we/they can hear sounds we/they have a problem with discerning speech. I had to come up with a way of getting this across when I was campaigning for the retention of hearing aid provision for people with mild to moderate hearing loss on our NHS. Of course, as you know, there are many other factors to take into account but I find the speech banana is a good start.
Terminology is a bit of a minefield. Sooo many differences of opinion. I tend to tell people I wear hearing aids but they do not restore my perfect hearing so I may still have to ask for repetition. It works for me – most of the time.
How were you able to superimpose your audiogram onto the speech banana?
I feel the best way for me to communicate and educate people about my hearing loss . Is to say “ I’m hard of hearing …” as I feel it’s an honest account of what my hearing loss is . I have a high frequency hearing loss in both ears … it’s a loss of hearing in both ears but I wouldn’t ever class myself as deaf and I get quite offended when people use that language. Because it just doesn’t describe my issue, and I feel it’s an ignorant term for MY hearing loss.
I do appreciate though that everyone has very different feelings on that and I completely respect that aswell .
Each of our personal hearing loss/deafness journey is going to be unique to us .
It is I agree a very personal thing to the individual.
Thankyou for raising this topic xx
Thank you for sharing your thoughts.