Disabled (Grimace)

Denise and Chloe at a dAP for HLAA-Frederick County in 2009

Disability (grimace). There is a small part of me that cringes when I hear that word, for often it is heard with real (or imagined) inflection that denotes a negative meaning. Occasionally, I get some “flack” from some of my readers about using the term “disability” so freely. Some folks hate the word and avoid it all costs. Others embrace it freely, caring not what the “label” may be since they are struggling to simply cope with WHAT IS. Recently, a fellow client at Fidos For Freedom used the term “differently abled”. I like that! That is the first time I’ve heard that particular variation. At Fidos For Freedom (where my hearing assistance/balance assist partner comes from), numerous programs are designed to carry the maximum “punch” in creating awareness in our community. One program is the dAP (disABILITY Awareness Program). Demonstrations are given at schools, churches, community groups, fairs, and much more to inform and teach the public about the different types of assistance dogs available, partnered with people with various disabilities. The program focuses on the abilities of all people and how an assistance dog can provide independence to people who do things “differently” as a result of chronic disease, invisible disabilities, hearing loss, mobility challenges, and much more.

Personally, I use the word ‘disabled’ freely for it is the wording in the Federal law that protects my rights as an individual who happens to have disabilities. As long as the law uses the term, I will continue to use it in order to identify with my freedoms – not my actual disability. I’m all for changing the term “disability” to something less negative, but until that happens on the federal level – I’m sticking with the term that protects my rights. Labels are awful aren’t they? I actually prefer “person with disabilities” for it identifies me as a person FIRST, and the disability second – as a descriptor, not a noun. I’ve been a member of the American Association for People with Disabilities for a number of years. They have done a lot of terrific work in laying the foundation for future laws that protect Americans who happen to be “differently abled”. Do I hope the word is eventually abolished and changed to something more politically correct? Well sure I do… but in the meantime I will continue to use a word that represents my freedom as an individual with disabilities.

Why is the Word So Negative?

Many people who hate the word “disabled” explain that it reminds them they are different. Yet we are. Acceptance of that is key IMHO to truly becoming independent in spite of a “disability”. One reader explained, “the word makes it sound as if I’m broken, or flawed”. It’s a shame society (and sometimes our peer groups) create this false picture of what a disability is. Often these negative connotations are the result of interactions with people who do not live with physical, mental, or emotional limitations that require a “new way”. People can be uncaring and mean (and you don’t have to be in junior high to experience this!). Sometimes the most hurtful things are said by people who actually care about us and are struggling to understand. Ignorance (not stupidity) is often to blame. It’s very difficult – but when you have the opportunity to correct and inform someone who doesn’t get it, do so in a proactive (not reactive) way. I try to remember that what I say may influence how this person interacts with someone else who has a disability in the future.

I believe that those who are born with a disability have the hardest time accepting the term. For example, I have met culturally Deaf people who really despise the word. (The culturally Deaf are identified with a capital “D” to identify a group of individuals who use ASL as their primary means of communication). I’ve often wondered if deaf people (lowercase “d” to identify adventitious deafness) are more accepting of the word because they experienced “normal hearing” for a time and now understand the difference because they are living WITHOUT a sense they once had? I had a Deaf friend at CSD complain that the word “slapped them with a label that meant they couldn’t do something”. I have struggled to understand that. Deaf (and many deaf) people cannot hear. What is wrong with that? Perhaps their thinking is that by accepting that label it requires the adoption of a number of other labels such as “slow”, “dumb”, “broken”, “reject”, “mistake”, and “different”. People who cannot see well without corrective lenses don’t fear being labeled with other words! Why do people with hearing loss fear that? I don’t hear in a normal way. So what?

I’ve heard others mention that the word makes them remember there are things they cannot do. I recently watched a YouTube video of a young Deaf lady who was “going off” on the fact that the only thing she cannot do is HEAR. Anything else she wanted to do she could, and she was not “disabled”. Yet the ADA protects her rights as a Deaf person to insure she has equal access to public events, education, doctor visits, and much more by requiring ASL interpretation so that she may interact on equal footing with those who use their voices to communicate. I suppose I’m a realist. I don’t understand the problem with being aware of what I cannot do. I understand that as a result of Meniere’s disease and hearing with a cochlear implant I will never:

  1. Be a rollercoaster tester.
  2. Wash windows on skyscrapers.
  3. Be a DJ
  4. Be a judge on American Idol
  5. Swing on a swing set (until they come up with an adult size seat similar to the protective seats for toddlers!)
  6. Tune pianos
  7. HEAR without the assistance of my CI

So what? I don’t center my life around this knowledge, nor do I attach any value to “being able to” as opposed to “not being able to”. I chose to enjoy OTHER things. 1) When I go to amusement parks I’m the official photographer. I ride a great number of rides that do not go “around and around”. I can throw a dart that insures I come home with large, ridiculous stuffed gorillas. 2) I can wash windows on lower levels. 3) I can listen to music and “ad lib” as best I can, but if it is a new song I’m lost. 4) I can be a judge on other types of panels. 5) I can climb on jungle gyms. 6) I can PLAY the piano (took 8 years of lessons!). 7) I can hear SO MUCH now as a result of my wonderful CI!

I believe that problem is that OTHERS often attach other meanings to the word “disability”. When they choose to do that, it fosters an attitude of treating a person with disability differently, or of having different expectations of them. Is this where the word “goes wrong”? I welcome your feedback and comments. As long as you don’t swear at me – I’ll post anything even if it disagrees with my own personal opinion. After all, if my desire is that you respect my opinion I can only promise to do the same. So many of you write me to give me “thumbs up”, or “thumbs down” in response to a post. I still welcome feedback privately as well! However, this is a topic I really welcome your feedback for I really am trying to understand everyone’s opinion about this word. I believe voicing opinions about this may help others! So “voice yourself”!

Denise Portis

© 2011 Personal Hearing Loss Journal

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7 thoughts on “Disabled (Grimace)

  1. Hi Denis, I’ve been reading your blog for a while but this is my first time commenting. Thank you so much for this post, I agree with it wholeheartedly. I wrote a short post about this on my old blog: http://lifeinsidethesehearingaids.blogspot.com/2010/10/defining-disability-part-1.html

    But I think you put it better than I did! 🙂 I see the word “disability” as a neutral thing; like you, I understand that there are things that I canNOT do because of my hearing loss (like sing!) but I’m okay with that. I love the things that I CAN do.

    Thanks for the post – I’m glad I’m not the only person who feels this way! 🙂

  2. DISABILITY
    Lets remove DIS and say we have an ability to hear or not hear and most of the time I consider myself blessed to be able to remove my aids and have peace and silence
    Some time ago when I finally agreed I had a hearing loss I had sessions with a deaf counselor to better help me use the anger i was showing because no one “would help me” Of course not becasue I had to help myself. the counselor was one that disliked DISABILITY and turned in around to ABILITY!

  3. being disabled in some way has a huge emotional impact on a person at least for a time as they work through and come to terms with what they cannot do. Then they can embrace the realities of what they can do.

    Then being “called” disabled by others who either don’t understand, use it negatively, or just patronize you with good intentions also can create a big personal impact.

    But it is personal–ie how I feel is my emotion, mine, and I alone have to deal with myself. Too often people expect others to sorta tiptoe around our personal sensitivities, whether they know those sensitivities or not.

    Just seems like anger, disappointment, hurt and such we with disabilties feel comes from our expectations. We have to remember that our situations cannot really be understood wholly by someone who has never faced them personally. How could they?

    It’s all a matter of coming to terms with ourselves and our “new ways”, our losses, and our gains for the loss. Once that gets sorted, there is less upset about what others say or do.

  4. I never wanted to tune a piano, lol. But to hear it how ever i can I am greatful.
    I never will sing in a choir again because i lose sounds and words, but i can still hear it.
    Fire up the CD it is time for Bach.
    I have a wife that understands i don’t hear everything for that i am blessed, and when i hear things wrong we get giggles out of it.
    God bless

  5. Denise,

    You always make me think!

    Interestingly, you brought to mind something I read years and years ago (long before having a hearing impaired son), and I don’t remember who the author was.

    I don’t intend to cause offense, but am curious about your take on it.

    She (who had a disability herself) said something to the effect that she preferred the “old” labels – deaf, blind, lame, etc. because she felt they were straightforward and honest. When people used euphemisms for (whatever her disability was) it made her feel like it was something to be ashamed of – something too awful to even say.

    Obviously, much depends on the WAY people say things – on their intent, yah?

    My son will say, “I’m deaf in one ear and hard of hearing in the other,” just as matter-of-fact-ly as someone would say, “I’m right handed,” or “I’m Swedish.” And that tends to be how I think of those kind of labels. Not as a negative, condemning thing, nor as something that defines the entire person, but as an honest descriptive word.

    What do you think?

    Julie

  6. Julie I’m all for “straightforward and honest”, that’s for sure. Sometimes giving it a simple “name” and identification one does limit confusion about it. Prelingually deaf, post-lingually deaf, late-deafened, congenital deafness, etc., can certainly confuse those who have no problems with hearing. It even can get “nuts” trying to use Deaf and deaf as the culturally Deaf take great pride in identification with their culture group. One cannot simply say, “I can’t hear in this ear” either for people may misunderstand that the truth of the matter is that you don’t hear at ALL in that ear. What your son says is very straightforward I think. By explaining it the way he does there is no confusion… and no apology. It’s just the way it is. From reading your own blog I know he has adjusted very well and doesn’t identify with any negative meaning for the terms.
    Hugs,
    Denise

  7. Well put! Many things elegantly and gracefully explained that I have been thinking.

    I am convinced, though, that any term that is currently respectful will gradually get adopted by everyone, and the jerks, there will always be jerks, will start using it derogatorily, and eventually it will get poisoned and people will want a new word. So I figure we might as well stick with the ones we have now. But, I will usually try to use the one a particular person prefers for themselves, because that is respectful.

    How you act and the tone you use actually matters more than the word, I think. I had a huge, intimidating looking, tough, male, actually quite kind co-worker who loved animals, but was a very VERY coarse speaker. When I found that my office Guinea pig died, He came over, poked it gently with his giant finger, and said, “ah. She croaked”. It was actually sweet, he sounded sad. Sympathetic. Nice but, “croaked”? Really? Such an awful word, but it didn’t matter. Tone and demeanor shine through.

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