Tag Archives | terminology issues

We Need a New Word for “Disability”

I’m stuck on terminology. I’m becoming increasingly disillusioned with the  disability word “disability”.

In my last job, I worked hard with the people I supported to help them realize that they had disabilities and to realize what that meant in their lives. I did this  for two reasons:

  1. The agency’s terminology of choice was “intellectual disability”, in consultation with self-advocates.
  2. “Disability” is so widely used that people really do need to know what it means for them. They need to be able to say, “I have a disability and because of it I need…” and they need to understand “disability” in order to understand and makes decisions about applying for supports that may be available to them.

I didn’t realize until recently though, that I just don’t like that word “disability” anymore. I’ll probably still use it, just because it’s such a socially recognized word, and I’m not sure yet what word I’d use to replace it. But I’ve really started to think about it.

Musings on “Disability”

My arm and leg may work a bit differently than everyone else’s, but they’re still “abled”.  Some of the people I’ve worked with have been plenty more “able” in some areas than I have , even before the stroke – better dancers, better bowlers, even better cooks. And even  though I’m a mediocre dancer, a terrible bowler and can barely cook a thing, I’m not “dis-abled”. In many areas I’m very “abled”.

But what do we replace “disability” with? I was struck by “diffability” when I first heard it, but rejected it for the same reasons that I have “differently abled”: It sounds like we’re trying too hard to put a positive spin in the wrong direction on disability. “Disability” could use some positivity associated with it, but it doesn’t need a spin implying that people with disabilities are different than everyone else.

Besides, everyone is “differently abled” when compared with the people around them. My sister had trouble writing essays in high school, when that was something that came very easily to me. I struggled with math, when that came easily to her. The fact that we’re all differently abled and have opportunities to use our strengths to contribute to society is a good thing, but that aspect of “differently abled” doesn’t come out in the way it’s used now.

“Disability” – What We Need

We need a word that:

  1. Conveys the importance of focussing on commonalities, not differences
  2. Stresses focussing on what people can do, rather than what they can’t do
  3. Uses positive phrasing.

Socially, it should also be a word that we’re prepared to make obsolete. Because if there’s anything I’ve learned about working with people with disabilities for so long, and living with disabilities myself, it’s that the things that *really* disable people and keep them from living “normal” lives are external to them. The barriers that create “disability” are out there in society, and society needs to become prepared to tear those barriers down:

  1. Make buildings/websites/transportation/processes more accessible.
  2. Design supports so that people with disabilities had a better shot at employment, education, income support and appropriate housing.
  3. Make our communities places in which everyone can participate fully and safely.
  4. Open peoples’ minds and hearts and find ways to change attitudes that disable people.

Let’s make the dream to eliminate “disability” and any other words for it completely, so that we all just become people with different strengths and needs trying to live together. Because, really…isn’t that what we are already?

On a totally unrelated note, I’m now writing articles about one-handed living over at Zujava. Check out the first in the series:

http://www.zujava.com/living-the-one-handed-life-general-tips

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After My Stroke: My “Weak” Hand/Arm/Leg

Recovering From My Stroke: My “Weak” Left Side

stroke

Reading a post by Grace Carpenter over at “My Happy Stroke”, I was reminded by how much trouble I used to have with referring to my left side, the side affected by my stroke, as my “weak” side.

Trouble because it wasn’t just that my side had been made “weak” by my stroke. Right after my stroke, it had been been nearly paralysed, or so it had seemed to me. I remember doctors asking me to lift my leg from the bed, and only being able to lift both a couple of inches. The foot that had kept its strong arch and pointed toes from years of highland dancing and ballet classes lay shapeless despite my best efforts to make it do anything. And my left hand, when I tried to open my fingers, wanted to remain a clenched fist.

The Problem with “Weak”

As Grace points out, “weak” is a problematic descriptor when it’s used to captured the full spectrum of experience with a limb that’s affected by a stroke:

  1. Weakness – Weakness is part of it, yes. Twelve years after my stroke, my left leg is strong enough to support my weight only for very short periods (this is a relatively recent development) and my left arm isn’t strong enough to hold very much. I do heavy lifting with my right arm and use my left arm as a brace, for extra support.
  2. Spasticity – For a long time (years), my left arm and leg had a lot of what my physiotherapists called “tone”. My arm and leg shook sometimes, and my arm jumped when I was startled (I was fun in scary movies).
  3. Lack of Sensation – Once, when I fell, I broke the little finger on my left hand and didn’t realize it until I had an x-ray of my hand done to look into something else. I couldn’t feel it that I’d broken my finger.
  4. Lack of Proprioception – For a long time (years), if I closed my eyes and someone raised my left arm in the air, I wouldn’t be able to detect where it was. For all I knew, it could be just be a few inches from my side, or out at shoulder-level, or straight above my head.
  5. Neglect – I’m pretty good about not neglecting my left side now, but occasionally I’ll walk outside with my t-shirt hiked half up my left side, or I’ll not realize that my jacket has slipped off my left shoulder to my elbow. It used to happen much more than it does now, though.

I generally use the word “weak” to describe my left side, just because I haven’t come across an alternative that I like (well, on my less-than-good-days, I might say “bad”, but I don’t mean it.)

Grace is considering “gimpy” but there’s something that doesn’t sit quite right about that with me, either…but if it works for Grace, more power to her! :)

Anyway, if you watch the video at the end of Grace’s post, you can get an idea of how my left arm now moves. It looks as if we’ve got about the same amount of arm movement and control, but Grace definitely has more fine motor skills in her hand. I am not to the point where I can pick up cutlery with my hand; the more I try to move my fingers, the more they want to curl up into a fist.

I really like Grace’s blog. Go check it out: http://myhappystroke.blogspot.ca/

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Ableist Language from People Who Should Know Better

I have some thoughts on ableist language today.ableist

A few years back, I took a Pharmacology class to help me to understand the medications that I’d be working with as a support person and the issues around properly assisting people to take those medications. It was an interesting course, taught by a Registered Nurse. I learned a great deal.

The section on anti-depressants was basically review for me. I’d been on anti-depressants on and off since I was 14, and spoken to many, many people who took them. I was interested to hear what the teacher had to say, but I was thinking that I’d get to relax a little bit. The course had been pretty fast-paced up until then.

All thoughts of relaxing went out the window after the teacher’s introduction: “We all have whacko thoughts from time to time, but for some people it crosses the line into something more serious.”

I put up my hand and suggested that perhaps there was a better word to use than “whacko”, and she kind of shrugged and went on with the lesson. I quietly seethed. I didn’t know the term “ableist” back then, but apparently I could recognize it.  And I can definitely recognize “ableist” today.

June 26: “Dr. Oz” Does Ableist Language

The things that bothered me the most about the “whacko” comment was that it came from a medical professional who should know better, and who should be setting an example as an educator. So you can understand why I’d be upset when I saw the promos for “Normal or Nuts” next week (June 26) on the daytime health awareness show hosted by Dr. Mehmet Oz.

The premise appears to be that a person describes a behaviour, habit or fear, there’s some talk among Oz and a group of professionals brought in for the episode, and each professional holds up a sign: “Normal” or “Nuts”.  It seems that several people are “assessed” over the course of the show.

Now, I was an English major for a painful semester. I recognize that alliteration is a tool, yada yada yada…but when I saw the promo, I immediately thought, “There’s tomorrow’s blog entry. Ableist language from a doctor on national television.  Nice job, Dr. Oz.”

Dr. Phil Doesn’t Diagnose and He Generally Spends a Whole Hour With a Person

The “Normal or Nuts” designation implies several things:

  1. That a behaviour, habit, or fear is normal is something associated with a diagnosis, with no in-between.
  2. That a professional can make a mental health diagnosis in a couple of minutes based on limited information.
  3. That “nuts” is a bad thing and something that you don’t want to be (that’s the ableist part)

Ableist language around mental conditions runs rampant in our society:

  1. “That’s crazy.”
  2. “He’s a psycho/nutjob/wingnut/whacko”
  3. “It’s insane in there.”
  4. “You’re nuts if you believe that.”

The fact that these words are so engrained into our vernacular reinforces negative stereotypes of people with mental conditions and keeps stigma alive. The fear of the stigma associated with having a mental condition keeps people from getting the help that they need.

And when individuals that people recognize as having authority, like Dr. Oz, use ableist language, they legitimize its message. It’s why media figures have to be very careful with their words, and why I’ve never particularly cared for Oprah Winfrey. While she’s undeniably done a great deal of good, I sometimes get the sense that she doesn’t responsibly use the incredible amount of power that she has. I hope that Dr. Oz doesn’t go the same way.

Past “Normal or Nuts” show: http://www.doctoroz.com/episode/normal-or-nuts-your-dreams-quirks-and-anxieties-explained

 

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A Girl With The Cane Confession…

I admit it. I use the word “idiot”. A lot. Just this week alone, I’ve used it in reference to Michael Bloomberg (for idiotthinking that banning supersized sodas in New York is going to have any effect on obesity rates), Jay Townsend (the Communications Officer for Republican Representative Nan Hayworth, for saying, “Let’s hurl some acid in the faces of those female Democratic Senators who won’t abide the mandates that they want to impose on the private sector.”), and my best friend’s ex-boyfriend.

I Feel Like An Idiot…No, Wait…

Melissa McEwan over at Shakesville reminded me of something important yesterday, though. “Idiot” is ableist language. So is “moron” and “imbecile”. They’ve all got pasts as sordid as “retard” when you get right down to it. It all just goes further back in history, and we’ve started to forget.

I’ve known about all this for a long time. I learned in training to be a Developmental Services Worker that “idiot” was historically used to refer to someone with a very low IQ. Several American states have only just updated their language to remove “idiot” from their laws, and changed outdated laws such as those that prohibit “idiots” from voting.

But I forget.

I really don’t think that very many people know that when they use the word “idiot” they’re using a term of widespread oppression toward people with disabilities. But, as commenter Hellianne explained on Shakesville when McEwan reminded someone that “idiot” was ableist and therefore not acceptable on the site: “It is precisely because the term is used as a derogatory term and because it originated as a label for a marginalized, unprivileged group that it is not welcome in this space. The age of the term isn’t really relevant; the point is that it designates a disability as an inherently negative (and hateful, in this case) thing.”

It may not seem like a big deal. But imagine if we started to use some of the language related to the oppression of other groups that has now fallen out of favour. Think of some of the racist terms that (for good reason) are no longer used anymore. Use your imagination. I don’t want to say them here.

I need to be more careful with my words. I need to make more of an effort to remember.

Thank you, Melissa and Hellianne, for a much-needed reminder.

Do you use any words that you know you shouldn’t, out of habit?

Visit Shakesville: http://www.shakesville.com/

Image credit: cteconsulting / 123RF Stock Photo

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The R-Word Hurts People

Check out this simple-but-powerful video about the R-word. Sometimes we’ve got no idea
who our words hurt.

http://downsdad.wordpress.com/2011/09/28/a-girl-speaks-out-for-her-brother-about-retarded/

If you’re ready, take the pledge at http://www.r-word.org/ to stop using the R-word.  It’s nice to see people make a personal commitment to try and stop using the R-word.

I’d never argue that the word should be banned. I don’t believe in banning people from usingintellectual disability words. I’d like to think that people would just care enough to voluntarily stop using words that offend large groups of people. And I’ve already talked about how I can see the points of people on both sides of this issue. Ultimately words are just words.

However, the words we use do ultimately impact how people see us, and they say a lot about our intentions. It’s difficult to insist that you believe that you believe in communities where everyone can live in dignity and participate to the fully extent possible if you believe it’s okay to use language that’s become negatively loaded and that pertains to groups that you’re trying to make feel welcome.

Words of wisdom to finish with; I haven’t been able to find a source.  The bolding is mine.

Watch you thoughts; they become words.
Watch your words; they become actions.
Watch your actions; they become habits.
Watch your habits; they become your character.
Watch your character; it becomes your destiny.

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Hooray for Hollywood…?

So there’s good news and bad news from Hollywood this week.

First, the Good News

The good news is that a documentary about people with intellectual disabilities was nominated for an Emmy.  “Monica and David”, an HBO film about two people with Down’s Syndrome who get married, also won Best Documentary at the Tribeca Film Festival.

This is definitely one I’d like to see.  In my experience, couples where both people have intellectual disabilities are mainly characterized by people without disabilities as “cute” (and not in a “Yeah, they make a cute couple,” way, but the more patronizing “Awwww, isn’t that cute!” way).  Hopefully this film will help to legitimize these adult relationships, where the people involved deal with adult issues and make commitments, in the eyes of society.

And Then, the Bad News

And, on the other end of the spectrum, the producers of “The Change-Up”, a movie released on August 5 starring Jason Bateman and Ryan Reynolds, have sent shock waves through the disability community. The controversy stems from a bit of dialogue, where Ryan Reynolds’ character observes about Jason Bateman’s character’s twin boys:

“Why aren’t they talking yet? Are they retarded or something?” and then, “I don’t know…this one looks a little Downsy.”

Kudos to the Special Olympics for taking this and absolutely running with it. I remember some uproar about the liberal use of “retard” in “Tropic Thunder” a few years back, and the Special Olympics administrators have obviously had enough of this:

http://specialolympicsblog.wordpress.com/2011/08/09/universal-pictures-thinks-biggotry-is-acceptable-and-marketable/

And rightfully so.

You guys know how I feel about this. Even if you don’t agree with me, check out what the Special Olympics blog entry has to say. You may change your mind when you hear what they have to say.

Thank you to Elizabeth McClung  at “Screw Bronze!” (http://elizabethmcclung.blogspot.com/) for putting me on her blog roll.  It’s very generous of her. :)

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Not Funny At All, Tracy Morgan

Comedian Tracy Morgan is in trouble again over his stand-up routine.

On the heels on his June 3rd show, in which he made several crude and negative remarks about homosexuals (including that he’d “stab” his son if he turned out to be gay”), Tracy Morgan’s Saturday night show included remarks about “retards” and a “cripple” that he’d once dated.

http://ca.eonline.com/uberblog/b249643_tracy_morgan_under_fire_again_mocking.html

Surprising Support for Tracy Morgan

The comments on this story, if you have time to go through some of them, are fascinating. I looked at the first 50, just to see peoples’ reactions to the story. I was surprised to see so many that felt that Morgan coming under fire for his comments about homosexuals, and now the comments on people with disabilities, is the sign of a PC culture gone mad. The term “First Amendment rights” was mentioned frequently. People wondered why these groups can’t take a joke, about what comedy is going to have for material if groups keep getting offended by every little joke about them, and say that if you don’t like Morgan’s humour, don’t go to his shows.

Well, if I ever did have a desire to go to one of Tracy Morgan’s shows, it’s gone now. And I don’t offend easily when it comes to comedy. My sense of humour is pretty dark, and I’m the first to laugh at a good joke about my disabilities or at disabilities or general.
Notice I said a *good* joke. There are witty, well-written, well-executed jokes…and then some that aren’t so much any of those things, but still funny…and then some jokes that are none of those things, and cruel to boot. The jokes that Morgan made fall in the last category, and it’s really disappointing to see that so many people consider them “humour”.

However, Comedians Should be Equal Opportunity Offenders

I did find one comment particularly interesting, though. One woman believed that Morgan shouldn’t have made the remark he did about people with disabilities, especially children, because they are “innocent” and have enough challenges to live with (as opposed to the intrinsically not-innocent children without disabilities that face no challenges, I guess). I don’t like this line of thinking. It’s amazing to me that the stereotypes about people with disabilities show up even in discussions of whether or not it’s “okay” for comedians to make offensive jokes about them. I’m not prepared to give Tracy Morgan kudos for declaring them “joke material” and treating them just like everyone else, though; I doubt he had that agenda in mind with his comment about “retards”.

If you happen to be one of the people who commented, on that article or on others or in your day-to-day conversations, that Tracy Morgan was inappropriate and needs to apologize for his most recent comments…thank you. I think that sometimes media figures forget just how powerful their ability to shape peoples’ perceptions are.

Sorry, Tracy. I used to be a fan, but I won’t be tuning in to “30 Rock” anymore.

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Politically Correct or Showing Respect? Are Words “Just Words”?

I know that some people really don’t like to be what they consider “politically correct”.

A boyfriend (now an ex-boyfriend) and I were talking over lunch one day. We hadn’t been together all that long. He was telling me a story about his job as I ate my hamburger.

“It was so retarded,” he concluded. (He wasn’t a fan of modifying to language to be what he considered “political correct”) “Hey, are you okay?”

I’d choked on my burger. “It was what?”

“Retarded,” he said. “No good?”

“Not if you expect to go to any work events with me or meet any of the people I support,” I said. “Hell, meeting my family’s pretty dicey if you’re going to go throwing the R-word around,”

“It’s just a word,” he said, looking confused.

“Not in my line of work, it isn’t,” I said. “You’ll make the people I support furious, or you’ll make them cry. My co-workers will wonder what kind of jack-ass I’m dating. And the R-word has been dirty in my family for as long as I can remember.”

“I can be good,” He smiled. “But, seriously…it’s just word.”

You don’t get it, I thought.

Not a Matter of Being Politically Correct

Being politically correct is one of the least of my considerations for choosing my language. Many of my  friends who dislike  the “politically correct language”  may disagree with me on that, but they’re not here, so…

I think that speaking respectfully about people can look to some people look like an over-use of politically correct language, but that it goes deeper than that.

I’ve had the “just a word” argument many times, and not just over “retarded”. I went through a period where I also argued that “slut” should be purged from the English language, on the following grounds:

  • It’s ugly.
  • It expresses a double standard that while it’s socially okay for men to have sex with many women, the reverse is not okay.
  • Women and girls call each other sluts without being aware of what it really means.
  • Calling a woman a slut, regardless of the intended meaning at the time, is a way to make a woman feel bad about herself.

Eventually, I got over wanting to ban “slut”. I discovered that I had the power to decide to decide whether the people who called me “slut” were going to make me feel like a slut or not. Their word made no difference; how I chose to react to their word did.

It really is just a word.

I took that lesson and applied it to other words that people would call me later on: “disabled”, “handicapped”, and “challenged”.

Yes, “retarded” is just a word. “Mentally retarded” is actually diagnostic criteria. “Retarded” means “slow” and, in the context of “That’s retarded”, isn’t necessarily meant to be a comment at all on people with intellectual disabilities. I realize all these things.

When It’s Not Just a Word

However, “retarded” is one of those words, like “slut”, that I choose not to use. Over the years, “retarded” has come to have a lot of negative connotations pertaining to people with intellectual disabilities. It’s become a way of putting people with those disabilities down, and part of the movement to institutionalize children with intellectual disabilities that resulted in widescale suppression of even their fundamental rights and freedoms. I don’t use it because it’s “politically correct” not to use it; I don’t use use because it’s a really emotionally loaded term for many of the people that I support.

As is the word “retard” which comes from “retarded”. If you truly, truly, believe that words are just words, respect people with intellectual disabilities and their ability to make their own decisions about what words they’d like used to describe them, and do an informal survey for yourself. Whenever you come across a person with intellectual disabilities (I use “intellectual disabilities”, by the way, out of habit more than anything else. The Self-Advocates Council of the national branch of an agency for which I once worked said that they preferred “intellectual disabilities”, and I’ve just gotten used to that terminology), ask him or her: “Is it okay if I call you a “retard” or do you prefer “retarded person” or something else?”

Or ask women, “Is it okay if I call you a “slut” or do you prefer “whore” or something else?”

You get the picture. If you really believe that words are just words, put your money where your mouth is. No agenda of politically correct language…the respect of finding out someone’s personal preference…and going by it.

Politically Correct or Personal Respect…What Do You Think?

Do you use the words “retard” or “retarded” in your daily life? Would you use them if if a person with intellectual disabilities was in the room, or ask that person if they’d be okay with you calling them those names? Why or why not? I’m genuinely curious…please leave me a comment…

I really don’t see the point of taking great pains to make a society accessible and inclusive if we’re then going to insist on using language that’s offensive to people (and this goes for language that may be offensive to any person, not just people with disabilities) just because we feel like we should be able to.

 

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10 Simple Disability Sensitivity Tips

Last week, in my post on invisible disabilities, I started to touch on disability sensitivity. I’d like to talk about it some more today.

We’re Not All Good Teachers

When my sister and I were old enough, my father took it upon himself to teach us both how to drive our family’s standard- transmission pick-up truck. I, the eldest sibling, was the first student.

I came back from our first session crying. My sister, a little more “take no prisoners” at that time in her life than I was, drove back to the house, dropped Dad off, and told him she’d learn by herself on our back road.

My father was well-meaning, but had been driving vehicles with a standard transmission since he’d gotten his license. He couldn’t understand why the process didn’t feel as intuitive to us as it did to him. I couldn’t get the timing right and kept stalling the car; Rachel kept making the truck “bunny-hop”; he knew what he wanted us to do, but it was so second-nature to him that he couldn’t explain it, and just got frustrated with the whole teaching experience in general.

I wonder sometimes if people who feel somewhat lost about how to act around people with disabilities feel like my sister and I did. Workers in the disabilities field get so used to talking and thinking in a certain way about what we do (in part due to current thought about disability sensitivity) that sometimes I think we struggle to remember exactly why we think that way, and struggle even harder to explain it to other people.

I’ve put together a list of ten disability sensitivity tips. Practicing them is now “second nature” to me (partly because I can now speak from “both sides of the fence” now), and I’ve tried to clearly explain why, to me at least, doing so is so important. We’ll cover five of them today.

Disability Sensitivity Tip #1: Keep Language Positive

Over the years, I’ve become the first to argue that negative words damage us only as much as they let them. But a society that’s made a commitment creating a culture where all people can feel included, particularly when some disabilities preclude people from understanding the terminology used about them and advocating for the use of different terminology if they choose, needs to be aware that words shape perceptions (whether we like it or not). In this blog, I’ve been using “people first” language as part of my practice of disability sensitivity; it doesn’t always flow as well, but it emphasizes that there’s more to the person than their disability. See this link for more information on people-first language: http://www.asha.org/publications/journals/submissions/person_first.htm.  Speaking this way feels a little unnatural at first, but soon becomes easier to do without thinking.

Advocacy groups are trying to reclaim some of these words, but it’s good advice to avoid them altogether: cripple, gimp, victim, retard/retarded, spastic/“spazz”. See the above link for a more complete list.

Disability Sensitivity Tip #2: Ask Before Touching Someone

At a barbecue, I went to get out of my lawnchair and commented that it was a bit of a deeper chair than I was used to. The next thing I knew, someone was trying to lift me out of the chair by my armpits. The sense of physical invasion made me furious, and ruined my evening. It’s not like I wasn’t used to getting assistance from people, but I was used to being asked whether I wanted it first, and I was used to my nurses telling me exactly what they were going to do before they did it.

I realize that this is an area that makes people especially uncomfortable. I was uncomfortable with it, back in my pre-stroke days. What *do* you do when it looks like someone need help? Do you risk offending him by giving it and implying that you don’t think that he’s capable? Or do you risk offending her by not giving it when it turns out that she really does need it?

Simple answer: Ask, “Can I help you? Do you need some assistance?” Ask especially if you’re going to have to touch the person, because many people assume that it’s just okay to touch someone with a disability without asking. If you ask me if I need help and I say “Yes,” tell me exactly what you’re going to do.

(And if I don’t thank you afterward for helping me, *then* you can slap me around a bit. I’m kidding. Don’t ever do this. To anyone.)

For some disabilities, giving physical assistance without being trained can result in serious injury to you or the person you’re trying to help. Don’t worry about disability sensitivity in these cases. If in doubt about whether you can assist safely or correctly…err on the side of caution and go find someone who can.

And if you ever ask someone if they need help and they’re rude to you…be satisfied with knowing that you a nice thing, and know that you’ve just come across a rude person. Even people with disabilities can be rude. Perhaps the person was just having a bad day, and it’s too bad you got caught in the crossfire…but you did a good thing.

Disability Sensitivity Tip #3: Don’t Touch Other Peoples’ Mobility Aids

People are fascinated with canes, wheelchairs and walkers. They’ll sit on a friend’s walker, or lean on their chair, or pick up a cane and just start playing with it. That sort of thing doesn’t bother some people. It didn’t bother me when I was in my wheelchair (but I didn’t really like my wheelchair.) But pick up my cane and start playing with it without asking my permission – that really bothers me.

I used to think that I was just quirky about this, until I read some books about disability sensitivity and etiquette that said that it really is a social faux pas to touch, lean on, or play with someone else’s mobility aid. These are the things that help us get around in the world – they’re often fitted specifically for us, and they’re very personal. When I’m out walking with my cane, it feels like an extension of my arm, so much so that I barely notice it.

If you’re tired and want to lean on someone’s wheelchair (or sit in it, if they’re not), or you’re curious about their cane or walker and want to look at it: ask them if it’s okay before you do it.. They may not be comfortable with people touching something so personal without their permission.

Disability Sensitivity Tip #4: Talk *to* the Person, Not Around Them

There are few things more annoying than having people ask a question about you that you can answer to the person standing next you. And yet, it often happens to people with intellectual disabilities. I get routinely asked when I’m out in restaurants with people I support, “And what would he like?” I make a big deal of asking the person I’m with, “What did you decide to have?”, just to get a point across: He knows what he wants. Ask *him*.

My friend Martin experiences this as well. He had a stroke after a car accident, can’t speak very well and is in a wheelchair. He’s “all there” – he understands everything that’s said around him, and he can answer. But people don’t give him the chance to. His physical disabilities cause people to assume that he doesn’t understand what’s being said to him. They talk about him, to whomever’s with him – “How’s Martin today? And what does Martin want to eat?” – and barely look at Martin.

Even if you don’t think that a person with disabilities is going to understand, address questions about her to her. Speaking directly to the person isn’t just the polite thing to do, but it’s the best way to communicate with someone with a hearing impairment (and who knows? That may also be an issue for her.) If there’s a person with her and she doesn’t understand the meaning of your words, the other person will step in if assistance is needed. If there isn’t someone there and she appears confused, ask her if she understood, and repeat your question. If you can’t understand her response, tell her that you didn’t understand and politely ask them to repeat her question. If you really can’t open a line of communication, ask her if it would be okay if you got someone to help you to understand what she needs. Practicing disability sensitivity in this way goes a long way toward making people feel acknowledged and like people value what they have to say.

It’s really all about polite treatment, which is what you’d give any person. Why should a person with disabilities be any different?

Disability Sensitivity Tip #5: Observe Proper Etiquette Around Service Animals

“Service animals” are not just guide dogs for people with visual impairments anymore. Dogs are being trained to assist people with physical disabilities to live independently, to support people who have severe panic attacks, and to even help keep people safe when they have seizures or blood sugar disturbances. They undergo special training through agencies and again when they are matched with owners, so that owner and dog function as a close team. The dogs are working when they are out in public and can’t be disturbed.
Unless you have its owner’s permission, NEVER:
• Pet a service animal
• Feed a service animal
• Allow your own animal to get too close to a service animal
• Otherwise distract a service animal while it’s working.

Disability sensitivity is easy to learn and important to practice. We’ll continue to talk about it later this week.

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Disability Terminology: “Living with Disabilities”, “Disabled”, Or Something Else?

Disability terminology is tricky.

Disability Terminology: A Matter of Personal Preference

My friend Janet, who has done a lot of work with people with disabilities, does not like the word “disability”.

I’ve come across this before. For a brief time I was talking to a guy on a dating site whose medical history was similar to mine: stroke at a young age and trying to regain as much function as he could. He couldn’t believe that I was okay with saying that I had disabilities.

I had to make an important distinction at that point. I don’t consider myself disabled, and you won’t ever hear me describe myself as such. I have some disabilities, yes, and I use aids to compensate for the deficits caused by those disabilities. (To me there’s no argument that having a left side as compromised as mine, even now, is a disability that produces functional deficits; let’s call a spade a spade.)

I do understand that other people don’t like that particular disability terminology. To them, I stress that considering myself a person living with disabilities doesn’t stop me from doing what I want to do. I wanted to take ballet, so I took it; I couldn’t get anywhere near technically masterful even at the basic exercises, but what what I did resembled ballet enough that I felt good doing it. Same with the yoga classes that I took last summer.  I was never going to be a master in either of those things anyway, so why not just take the classes and enjoy them?

But I digress. My friend on the dating site didn’t like the fact that he “has disabilities” because he wasn’t ready to have a word with negative connotations apply to him. Janet doesn’t like the word because she thinks that the “disability mindset” is too hard to get out of.

  “I prefer to call it a ‘bump in  the road’”, she said. “It’s jarring, yes; it’ll shake you up a  bit. Maybe enough to even  cause some damage, so that  you have to ask for help. But it  shouldn’t throw you off track  forever. It shouldn’t stop you from moving forward. But  “disability”? That’s a hard one    to shake. You can get stuck there for a lo-o-o-o-n-g time.”

Disability Terminology: Making Compromises

My resistance to moving away from “disability” likely comes from a certain degree of institutionalization. I’ve got a lot of training that says, “We say “disability” because research has shown that this group prefers it”.   On the other hand, I’ve got a lot of experience that says that people with disabilities don’t like thinking of themselves as having disabilities, or being grouped together with others with disabilities. I understand Janet’s thinking, and actually really like it, but “disability” is a word that comes up so often for so many of us that live with it that I think we do have to find a way to reconcile ourselves with it…if for no other reason that when I understand my disability, I can better express to people what I need.

I worked with several people with mild intellectual disabilities who, in discussions of disability terminology, responded well to this line of thinking about how they might view “disability” more positively:

  • Your disability means that your brain works a bit differently than most peoples’, just like my disability means that my arm and leg work differently than most peoples’.
  • It doesn’t make you any worse or any better than anyone else, and it’s only a part of what makes you *you*. There’s much more to you than your disability.
  • There’s no shame in asking for help when your disability makes it difficult for you to do something.  The real shame would be if you were missing out on things you enjoyed because you were scared of what people would think because you asked for help.
  • The people that make fun of you for having a disability or asking for help aren’t people that you want to know.

This kind of work is ongoing. Sometimes it takes a long time for people to see that they don’t need to be ashamed of who they are. Ideally, disability terminology should provides a way for people to express confidence in themselves as people with disabilities, without the stigma attached to current terminologies.

Disability terminology should also be a teaching tool, not something that causes further division. Ultimately we’re all just people with differences, and it’s not in any way a bad thing. But society’s still not at a point where we’re consistently taught that, sadly.

 

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