I sometimes write about my experiences with hearing loss for other reputable blogs or magazines to help build awareness of hearing loss issues and advocate for people with hearing loss. You can find several of those pieces here.
A few weeks ago, one of my favorite sites sent out a series of writing prompts including “I’m Disabled and I’m a Parent.” It seemed like a perfect opportunity to write about the importance of educating children about hearing loss protection, yet I balked at the chance. The word disabled felt odd to the touch. It didn’t seem like something I wanted associated with my hearing loss. But why not? Was this stigma rearing its ugly head again?
I had to figure out, does my hearing loss make me disabled?
Hearing Loss is a Disability
On the one hand, the answer must be an emphatic YES! This is the only way people with hearing loss can receive the protections they need under the Americans With Disabilities Act of 1990. It is the only way we can realistically fight for the accommodations that we need at work and at play — things like hearing loops and captioning.
On the other hand, the word may be part of why people resist acknowledging and accepting a hearing loss. This may be especially true for people who developed hearing loss as adults. Being “disabled” requires a shift in how one views oneself — a pivot from feelings of confidence and self-reliance to fears of weakness and helplessness.
Rightly or wrongly it is a difficult label and one that still gives me pause. I was raised to value independence, strength and self-reliance. Not to rely on others and certainly not to let obstacles prevent me from achieving my goals — all things that can be unfairly associated with the word disability. Maybe this was part of my father’s resistance to accepting his own hearing issues. If anything his generation valued self-sufficiency even more than my own, especially for men.
Learning to Own It
In the end, it is just a word. Just one part of the description of myself — like brunette, or persistent or funny or terrible with directions. It is part of what makes me uniquely me. I need to embrace it, and own it, and do all I can to not let it stand in my way. That is my goal.
Readers, how do you feel about the word disabled when it comes to your hearing loss?
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I’ve been wearing hearing aids for a year and I am still trying to figure out a term to describe my hearing loss. I fluctuate between hearing impaired and hard of hearing. Does it make me disabled I hadn’t really considered that. Now there’s something else to think about!
The nomenclature can be challenging for sure! Thanks for sharing your thoughts.
Same here as well! I’ve never considered it when explaining to those around me. Being younger (28) with this experience has created a lot of self exploration in how I view myself, then present it to others.
I think it’s important to say we “have a disability” instead of saying we “are disabled.” Our hearing loss is something we have and we must not let it define us.
Good distinction. Thanks for sharing that.
No one likes to be disabled. No one likes to “feel” disabled. No one likes to be looked upon as a disabled person, Yet, taking a wider view of life, we all experience to varying degrees, particularly as we grow older, many things we no longer have the ability to do or do well. Sometimes we joke about those things as though they were just a rite of passage. I’m not able to run as I once did. I can’t climb trees the way I used to do. I can’t dance all night anymore. Ha Ha!
Well, I can’t hear like I used to hear. Without these appliances hanging off my ears I am deaf. Even with these appliances hanging on my ears I am dis-abled in many situations where others are not. I find that I never leave the house without considering this disability that never goes away.
I don’t know of a better word to describe my hearing loss than “disabled”. It’s certainly a challenge and in a sense we all have special needs, but when all this pretty talk is done we are left with the truth: we are disabled. It means nothing about who we are only “how” we are.
Yes, I have a hearing disability. It’s just what’s so for me. I’m still a nice guy – or so my mother used to tell me. I’m not as lithe and limber as I used to be – oh wait! That’s another disability??
Thanks Shari – this needs to be out front in the matter of hearing loss. Rather than shying away from the term, we need to be vocal about our needs in all situations. It’s how we are and how we will make a better world for those among us who suffer a hearing disability.
Thanks Jerry. I always love to hear your perspectives on these issues.
At first I felt badly about my hearing loss classifying me as disabled. I, too was raised to be independent and self reliant. Now I see it as just another word to describe who I am. Christian, tall, disabled woman with a hearing loss. It is a part of me.
Part of the reason I feel this way is through educating myself as much as possible. I have learned to inform the people around me about my hearing loss in a positive and helpful way. I have learned about hearing exhaustion, and how to increase my ability to communicate with others. Most of this education comes through livingwithhearingloss.com and others like it.
Thank you!
I hope you reach your goal!
Thank you for sharing your thoughts. I agree that educating ourselves and others is so important. Seems like you are doing a great job on both fronts!
Good one Shari – it’s wonderful to watch your own journey and pathways with hearing loss and the important topics you discover and write about along the way – like this one. Your bottom line is right – especially now – having a disability carries no stigma (we keep hoping, raising awareness, fighting for).
The dilemma faced by millions of us with acquired (and often later life) hearing loss is parallel to the many varieties of physical and emotional changes that create temporary or permanent disabilities (e.g. mobility, cognitive, vision, etc.) as time marches forward in millions. We’re the same folks we always were. The label (like it or not) offers some protection, some resources, and also teaches us so much about the enormous buzzing multitude of human diversity and abilities.
Lauren
CCACaptioning.org
Thanks Lauren. Great points!
Good post! You make a lot of important points.
Thanks for reading and sharing your thoughts.
I have no problem with the word “disabled” … it’s a fact and a true experience. My hearing loss is a “disability”…. i am ok to say it’s a “handicap” the use of these words for me is about my understanding and interpretation.. I own the difficulty I have with this hearing loss. It labelled and interpreted according to personal judgement.. it can be a emotive content and is hard to embrace but to make it a practical, factual reality I have a “disability” in hearing loss only.. this is my truth . .. to own or admit this word disabled for me is about regaining confidence and trust that I am ok . However it’s possible that many ordinary people and hoh or deaf may not like that word . I think if that is the case they are in denial and become a victim of the word. It’s has a stigma , a poor me , pity , etc these are all due to lack of confidence and denial. I admit it’s taken me a long time to appreciate the fact being hoh or deaf , I use both when I am describing or meeting new people . They need to know the truth of my disability .. and the more I trust myself , it becomes no problem … any feedback appreciated .. I am deaf , hoh and it is a disability…….
Thanks so much for sharing your experiences with this issue. It is such a personal one.
Obviously, Shari, you pushed the right button today!
I struggle with finding a word to describe my hearing loss. I have decided on HIPster – hearing impaired person. Decidedly much cooler sounding than HoH – hard of hearing.
Love it!! Thanks for the great idea!
I do think of it as a disability, actually feel people who develop hl might have more political influence if we thought of the need for disability rights. I certainly understand so much more about stigma and lack of access! But as it is for others it’s complicated…to me there are many gifts in so called “disability ” such as empathy, patience, increased appreciation of the silence our culture runs away from! Great post Shari …thanks
Thanks for sharing your great points on this topic. Political influence would be helpful.
In my case, my severe hearing loss, due to an auditory neuroma and 25 radiation treatments on the right, and preexisting deafness on the left, has made me 100% disabled, as evidenced by the disability check I receive monthly. I went from useful hearing, that enabled me to work as a full time (plus!) Hospice RN to being unable to hear well enough to do the job any longer in a span of 2 years. And because I’m stubborn and didn’t want to admit that I was no longer able to hear well enough to do my job, lost my job then waited a year and a half to apply for disability. I tried to find work, but didn’t. This put my family in a very precarious financial situation as we went through all savings, I cashed in my IRA, borowed money, all just to pay bills. I did not want to lose a career in had spent 30 years in, even though I could no longer complete even basic assessments required of me.
So yes, hearing loss is a disability. 20% word recognition it not compatible with many jobs. Complete loss of upper and some loss of mid and lower range hearing makes some jobs impossible. I do understand what you are trying to convey, but in some cases, there is no way around the word “disabled”. Unless you are “old”, like me at 55 and are able to use the word “retired”.
Thank you for sharing this important perspective.
I am 65 and retired. I still consider myself disabled because, unlike most retired people, I am unable to have any social life, to travel, or to do volunteer work. I worked doing labor jobs for the past 20 years after my hearing made it impossible to get any other work. Now, I am too old to do that strenuous of work. I feel that because of the isolation and inability to get any help as with other disabilities……..this is truly one of the worst disabilities at this age.
Thank you for sharing your thoughts. Is there an HLAA chapter near you? It might be a great way to meet others with hearing loss.
I am an 89 year old woman who has a” PROFOUND HEARING LOSS”. That’s what I tell people when I can HEAR but not COMPREHEND what they are saying and must ask them to repeat!
Certainly it’s a tremendous DISABILITY and in my case,a DISABILITY that has progressed over the years. But “DISABILITY” is also too NEGATIVE a word to describe what I am able to surmount with help from new technology, a Tcoil in my one powerful BTE aid (generously provided by the Canadian Gov’t,) and courses in Speech Reading etc. that allow me to enjoy life and appreciate all that I have(perhaps even more than people with normal hearing?)
Thank you for this great perspective. Best of luck to you!
From my perspective, I do not see my deafness as a disability. Rather I see it as an identity factor very similar to one’s race or ethnicity. Being deaf has opened many doors leading to being a part of a minority culture and sharing in all aspects of this culture: language, ideals, values, storytelling, community, and much more.
My perspective is similar to those of other minority groups. For example, if someone is of Mexican heritage and communicates using Spanish, providing them with a Spanish-English interpreter does not classify them as disabled. So why should it be different in my case?
Another way to look at it….I am fluent in ASL and a university professor. Yes I have an interpreter in my classroom. But for what reason? I can present all critical topical information with in-depth thought-provoking examples and challenge questions so that my students are fully versed in the content being discussed. But here’s the thing, the majority of my students aren’t fluent in ASL and therefore can’t understand me. So the interpreter who voices my lectures is actually providing them with an accommodation. This does not in any way make them disabled. It goes both ways.
So that’s my perspective. My journey to Deafhood taught me a lot of things, including that my being Deaf does not make me disabled. 🤘
Thank you for sharing your perspective.
I simply can’t embrace using the word disabled. Even if I “qualify” with my fairly severe hearing loss. I am still shy being open about it. I have only divulged to a close few, but will still ask for clarification or for someone to repeat if I still can’t hear someone or something being spoken.
I am beyond grateful for this technology. It is as though the lights have been turned on for me! Still, disabled doesn’t feel quite right…maybe I need more time to adjust…
Thanks for sharing your views. Thank goodness for technology!
I don’t feel ‘disabled’ just because I have hearing loss, although technically I am. I don’t feel disabled just because I wear glasses, though technically I am. What I feel is shut out. Society is unaware of the complications of living with hearing loss, the scope of impact and the magnitude of the problem- 23% of the population are affected. 1 in 4! Of all ages! So without community awareness and accessibility we try to function at the same level of engagement as the hearing. It’s exhausting. We need to speak out loudly and clearly that access includes us.
Great points! Thanks for adding to the discussion.
Desiree,
Theres a huge difference between my glasses and my hearing aides. My glasses give me normal vision. With them on I see as well, or better, then people who don’t use glasses.
With my hearing aides, I can talk with someone, but only in a quiet setting, with them somewhat close to me, and facing them head on. And I still will ask them to repeat words, sometimes more than once. I cannot have a conversation with someone who mumbles or speaks softly. I have problems following conversation at my own dinner table. Restraunts are 1000% times more difficult.
I can use a phone, but not to talk with someone I don’t know, or who has any kind of accent different than mine, or a soft female voice, or who speaks fast…the list goes on.
I cannot watch TV or a movie without closed captioning. Live shows, like the daily news is headache inducing.
This is a disability. It’s just invisible to most people who don’t know me, or who I haven’t interacted with in more than 4 years. Yes we need to be vocal about hearing loss to the greater community. I also think the feeling of being shut out is the worst part of being hearing disabled. I used to be very outgoing, had a job.where I interacted with many people daily. No longer. And iissues it so much!
When I’m at a huge disadvantage at most everything that requires auditory communication it seems that “disability” can be accurate. However, with some assistive technologies, I may not be “disabled” for that moment. For me, employment is the biggest issue and yes, I feel disabled because there’s not too much that can yet bridge that gap.
Interesting perspective. Thanks for sharing your thoughts. You are right that employment is key.
I think people need to be educated in terms of etiquette when it comes to communicating with a hard of hearing person. Many people tend to exaggerate every sound which is hurtful and downright rude. Its incidents like this that I feel “disabled”. Yes it may take me longer to process speech, and people without hearing loss should be more considerate. I have a hearing loss since age three from measles , so I have many experiences with the label “disabled”. Bottom line is it is a disability, something I’ve learned to live with, but I never think about it….just another word as you mention above.
Thanks for sharing your thoughts on the subject.
I think the word ‘disabled’ always has the connotation that you aren’t “as able” as others and I truly believe that isn’t the case for a lot of people who have that label put on them – they are often so much more “able” because they’ve overcome obstacles that the rest of the population never have to deal with.
Great perspective! Thanks for your comment.
In Calif theatres there is always a device for hearing impaired so they can also enjoy plays. I thought that was genius and so glad to see it. I have had hearing issues this past year and in the past, and so I definitely take your point.
Thanks for sharing your thoughts Carol.
I feel impaired but certainly not disabled. Disabled has a negativ connotation to me which I don’t think fits well. Of course there are limits to what I can do, but then I think of alternatives.
I agree that alternatives or work-arounds can make a huge difference. Thanks for adding that point to the discussion.
The term “disabled” has different meanings in different situations. Legally, those of us with significant hearing loss who need auxiliary aids or services under the ADA then need to admit we have a hearing disability if we cannot reliably understand communication otherwise. But in some situations, we may not feel we have a disability. At home, with the captioning, hearing loop and my telecoils turned on, I may understand television or movies even better than most people do. I may even perceive and interpret facial expressions and body language on the captioned screen better than most people do.
But in many situations, I’m certainly disadvantaged by my hearing loss. In some, like in noisy airplanes and gyms, or groups in noisy places, I do have a hearing disability. It’s tough for many people to realize that the environment and other conditions like accents, mustaches or barely moving lips can themselves significantly reduce a hard of hearing person’s ability to understand speech. Thus a person’s ability to function can change dramatically based on external factors that may seem insignificant to others.
Well said. Thanks for sharing your ideas on the subject.
Shari – This post really is at the pulse of what a lot of us in the hearing loss community think about. When it comes to disability rights on the job, at school, or in the community, the term ‘disability’ is absolutely essential to obtaining services and protections under the law. Does a disability of hearing loss have to be our main identity? I don’t think so…because at the end of the day, we have so many other aspects of our lives that influence who we are.
Keep advocating!
Shanna
http://LipreadingMom.com
Agreed! Thanks for sharing your thoughts.
First I was stuck in the stigma. Then I fell into the disability hole for a short time. Now I think of it only as a different way of communicating. Everyone has a different style of mobility, communication or way of being. Normal is an illusion.
Good point. Thanks for sharing your thoughts.
I refer to myself as someone who is “auditorily challenged”.
Nice one.
For me it’s a little weird, ’cause I’ve had my hearing loss my entire life, so I’ve never known anything different. The configuration of my specific hearing loss makes it so I have little trouble understanding speech in quiet surroundings, even though the majority of the frequencies at which I have loss are at 40 dB hearing thresholds. So, while I do have trouble understanding people when it’s noisy or if they’re in another room or if they’re using a loudspeaker, I don’t really have so much trouble in normal surroundings that I would consider myself “disabled”. I’ve never thought of myself as disabled, ever. And yet, there are some situations in which I would actually want my hearing problems to be taken into account, like when I don’t process what someone is saying as fast as they’re saying it because my brain is still working out their words, or when I don’t catch 2/3 of the conversation at a friend’s house because everyone who lives at said friend’s house talks softly. I also recognize that it will most likely affect my conversations with customers and/or co-workers once I get a job. So it really just depends. I honestly consider it more of a fascinating frustration when it pops up rather than a disability. It’s just downright interesting to me when everyone else hears something and I’m just sitting there like, “there’s noise happening?” lol.
Thanks so much for sharing your perspective.
Hi Shari, I’m an audiologist and I am just starting to build my own pracitce. I am really a fan of your articles. I would love to have you write a blog for my website or maybe I can include a link to your blog for my patients to read. Let me know if there is a way to private message you to discuss this further. Thanks!
Hi Jaime and good luck with your practice. Feel free to share links to any of my articles on your site. Best of luck to you!
I don’t think of myself as disabled but will take advantage of the fact that hearing loss is classified as a disability. My workplace guarantees interviews for candidates classed as disabled if they meet the essential criteria for a job application. I also take advantage of being able to buy a disabled person’s railcard.
Thanks for sharing your thoughts.
I do not feel disabled with having hearing loss. I do tell people I have a hearing impairment, which I do recognize as a disability, but I don’t believe it is so severe to be classified as disabled. I’m perfectly comfortable telling someone that I have a disability, I’m hearing impaired. I’m recognized of my impairment, but I’m not treated like “a disabled person“.
Thanks for sharing your thoughts on the matter.
Thank you for writing this! My daughter (5 months) is hard of hearing. I am thinking a lot about this, especially when I describe her hearing to people as she already has bilateral hearing aids. I’ve been enjoying reading your articles for a bit of insight into her future!
Thank you for reading. Best wishes to you and your daughter.