Archive | June, 2011

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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Social Services: The Risk to Clients When Systems Fail

When I was getting my certification to work in the field I do now, several of my teachers seemed (to me) to have a bias against social services agencies stance that infuriated me. At that point, I had volunteered for several years for a social services agency of whose I was very proud. I resented the suggestion that its work was actually setting people with disabilities back instead of moving them forward.

Still a Need for Social Services Agencies…

Agency supports are sometimes necessary to assist people to “put the pieces together”…

I understand now that my professors weren’t necessarily biased against social services agency supports, but were rather trying to get us to question a widely-held assumption that only agencies and “workers” can provide people with disabilities with what they need. The opposite is true. There’s no reason why the community, its members and social services agencies that haven’t traditionally provided services to people with disabilities can’t provide support that agencies like the ones for whom I’ve worked and volunteered traditionally have; it’s just that the wall of, “Oh, he/she Is one of *theirs*” has always stood in the way. Agency involvement sometimes keeps the walls to true inclusion in communities standing.

However, no matter what vulnerable group you’re talking about, the nature of our society dictates that there are always going to be people out there who need support who may not be able to find it (or enough of it) from family or friends or other informal systems. The world still needs social services agencies and the supports that they provide.

…But Also a Need for Change

And despite budget cuts and legislation and other changing realities, agencies have to find ways to provide effective and thorough support, or we hear terrible stories like the following. Just a warning; I found this story very difficult to read. But please read it, especially if you live in Canada. People need to know just how easy it is for families to fall through the cracks, and just how little a voice children (especially children with disabilities) can have regarding what they need when there are lots of other needs in a family.

http://www.theglobeandmail.com/news/national/british-columbia/bc-politics/disabled-girl-left-with-dead-mother-victim-of-neglect-report/article2078774/

It’s almost physically painful for me to think about what the days after her mother’s death must have been like for this poor young woman. Alone, already significantly neglected and unable to hear because her hearing aids weren’t working, not understanding what had happened because of Down’s Syndrome, trying to feed her mother’s body and administer her medication…it’s a heart-breaking story.

Some Things Should Never, Ever Happen

And a shocking one. Several social services agencies from various British Columbia government Ministries were involved with this family. There’s no way that something like this should have happened, ever. The British Columbia children’s watchdog has already made a report to the Premier about her recommendations based on this incident, including better communication between Ministries when it comes to supporting children with disabilities in the province. Hopefully this will prevent children from falling through the cracks the way this child did.

There are lots of people who support children with disabilities who do wonderful work. They need to be a part of system that allows them to do that work effectively, so that something like this never happens again.

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And Now for Something Completely Different…

Just for a bit of a change of pace, let’s discuss one of my favourite movies: Return of the Jedi.

Yes, Return of the Jedi

I can just see my friends cringing at the fact that I’ve found a way to work Star Wars even into my disabilities blog, but I promise that I can do it legitimately. It’s not even that difficult.

Have you ever thought about the fact that the two people around whom Return of the Jedi basically revolves both have major disabilities? Other characters play significant roles, of course. But in the end, the fate of the galaxy comes down to a man breathing through a respirator and a man with a prosthetic arm duking it out Jedi-style in the Death Star’s throne room.

(For those who have forgotten, or never cared to know, Darth Vader chopped off Luke Skywalker’s forearm during a fight in The Empire Strikes Back. Luke wore a prosthetic arm from that point on; it never seems to affect how he functions or anyone else’s perception of him. In fact, he does some *awesome* lightsaber work in “Return of the Jedi”.)

I admit it. I’m a Star Wars nerd. You have no idea how excited I was when this idea that Vader and Skywalker had major disabilities in Return of the Jedi occurred to me.

Hollywood Stereotypes of People with Disabilities

It’s interesting in Vader especially. There’s a tendency in Hollywood to stereotype people with disabilities as good and noble, courageous, empathethic (and, especially for people with intellectual disabilities, childlike and innocent). Darth Vader is none of those things. Luke finds good in him him eventually…but one of our first exposures to Darth Vader in the original Star Wars movie involves him almost killing an employee who disagree with him. I wonder if we’re maybe also, at least in part, so fascinated by the Dr. Gregory House character on FOX’s “House” because he has physical disabilities and yet is such an obviously miserable person; he also goes against the stereotype.

Think about some of the portrayals of people with disabilities that you’ve seen in the movies and on television. Are they well-rounded characters?  Or stereotypical?

I promise not to talk about Star Wars again for a while…

 

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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, cont’d

In my previous post on disability sensitivity, we talked about some general practices to keep in mind when interacting with people with disabilities. I’m going to round out the list with tips regarding specific types of disabilities in specific situations.

Disability Sensitivity Tip #6 – People Who Use Wheelchairs

Keep the following in mind when you’re with a person who uses a wheelchair:

• For extended conversation, get down to his level to talk to him by sitting in a chair yourself. It’s uncomfortable for him to have to look up for that long.
• When planning outings, check that the places that you plan to go on outings before you go are accessible.
• If you are pushing her chair, let her know when you’re about to start pushing. Try to let her know what you’re doing as you’re pushing (for example, tell her if you need to tip the chair back to get up onto the curb). Be aware that pushing someone smoothly takes practice. It’s not as easy as it looks!

Disability Sensitivity Tip #7 – People with Hearing Disabilities

Keep the following in mind when you’re with a person who is hard-of-hearing or deaf:

• Make sure that your lips are always visible. Speak directly to the person. Make sure you are always looking at him, and use simple sentences. Avoid activities that affect your speech or make your lip movements difficult to read. Do not  like chew gum or smoke.
• Speak in a normal tone.  Shouting isn’t going to make you any easier to hear. Concentrate on speaking clearly.
• Gently touch her on the arm or shoulder to get her attention before you start speaking.
• Don’t worry about using terminology like, “Did you hear the story about…?” Despite popular belief, most people with hearing disabilities are not offended by these colloquialisms.

Disability Sensitivity Tip #8 – People with Visual Disabilities

Keep the following in mind when you’re with a person who is visually impaired:

• As you approach her, identify yourself and any people who are with you. Introduce her to the people who are with you.
• Ask him if he’d like your help to get around. If he says yes, let him hold your arm and lead you. Let him know obstacles he that is approaching by using the clock face (“Chair at 2 o’clock).  Tell him approximately how many steps away the obstacle is.
• When supporting someone, provide her with a quick overview of a room as she enters. Let her know who is in there, and tell her about potential obstacles and approximately where they are. Tell her about any steps in the room and approximately where they are.
• Don’t worry about using language like “Did you see that?”. Most people with visual disabilities aren’t offended by these colloquialisms.

Disability Sensitivity Tip #9 – People with Cognitive Disabilities

• Don’t “talk down” to him. He’s not a child, and enjoys talking about the same things you do: Weekend plans, relationships, jobs, etc.
• Assume competence. She can make her own decisions, unless you’ve been told otherwise. This is another assumption that you should always make.
• Rephrase or try to communicate in a different way if she doesn’t understand what you’re saying. Sometimes just showing her what you mean works well. If you can’t understand what he’s saying, ask him to show you what he means.
• Allow lots of time for communication so that she doesn’t feel pressured.

Disability Sensitivity Tip #10 – People with Mental Conditions (Mental Illness)

• Recognize that people deal with mental conditions in varying ways. Ask what would make her feel most comfortable.
• Remain calm in crisis situations. Ask if you can help and be supportive. Find out if someone should be called. Some resources say to find out if there’s a medication that the person should be taking. For personal reasons, I am very reluctant to administer medications or suggest that someone take medications (unless it’s a life-or-death situation, such as an EpiPen for clear signs of anaphylaxis after food consumption or a bee sting) unless I’ve been told about it first, without speaking to a doctor or a pharmacist first. Think about what your position is on this.
• Assume competence. Having a mental condition does not mean that an adult can’t make his own decisions.

The 10 tips disability sensitivity tips that I’ve talked about are just a short list of how to make everybody in our society feel as safe and comfortable as possible…and that’s the ultimate goal of a culture of inclusion, where everyone feels welcome.

Check out the following links for a *very* comprehensive discussion of disability sensitivity:

http://www.1800wheelchair.com/news/post/disability-etiquette-beyond-wheelchairs.aspx

http://www.dennywelch.info/resources/disabilitye1ddw2006.pdf

http://www.unitedspinal.org/pdf/DisabilityEtiquette.pdf

 

See you Monday! :)

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AVM Resource

I’m not feeling all that well tonight, so this will be a short entry. But I did want to point people to a new AVM survivor community that I’ve come across:

http://www.avmsurvivors.org/

This AVM survivor community has really used the power of social media applications such as Facebook, Twitter, and forum and blogging applications to bring people together; it’s quite impressive.

I hope that the link to this AVM survivor community will be useful to those with AVMs or those wanting to learn more about them. I will soon do a post on other AVM support community websites and support resources.

See you tomorrow with the second post on Disability Sensitivity. :)

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My Brain AVM Story: The Stroke

I don’t remember waking up and thinking, “I can’t move my left side”. For a long time, I thought that the stroke occurred while I was on the operating table. It was a couple of years later before I realized that it actually took place several days later, and not in the area where the residual AVM was. There was a seizure involved (which I do remember), and then a gradual realization that there were parts of my body that just didn’t move right anymore.

A Brain That Doesn’t Realize Parts of the Body are There

“Trying to lift a limb affected by stroke is like trying to lift a sleeping cat,” said one of my nurses. That meant nothing to me at the time because my family had only had dogs for pets and I’d never tried to lift a sleeping cat. (I have now, which gives me an even greater respect for the nurses who literally had to move my limbs for me to get me dressed and undressed each day). All I knew was that I felt like my left side was dead; my brain didn’t realize that my left arm and leg were there.  I tried to think with all my might, to get more than a little bit of movement out of my left arm, leg, foot or hand, but none of them wanted to cooperate. My leg would only rise a couple of inches of inches off the bed, and stop. My foot pointed a little bit, but my toes wouldn’t wiggle. I couldn’t pick anything up; my fingers made a loose fist, but my thumb lay flush across my palm and refused to move. I came to a great appreciation very quickly of just how much I needed my thumb to do just about anything. However, I was determined that the stroke wasn’t going to prevent me from returning to my summer job in July.

Dealing with the Stroke Brain

I don’t remember how I managed to eat, not being at all ambidextrous (well, truthfully, I hated the hospital food, and only ate and drank enough so that they’d keep a catheter out of me). I imagine that the things that I do now (open cracker packages with my teeth; saw my food with my knife; I now make a standard disclaimer to new friends that dining with me isn’t always a graceful affair) were already done for me. My signature became acceptable, but I eventually sent my looseleaf notebook and pens home with my father. I was not going to be doing any real writing for a while.

Physiotherapists would come and do basic range of motion exercises with me, and help to get in and out of a chair so that I could spend a couple of hours out of bed each day. Even doing that was exhausting. I spent my days mostly sleeping and reading the magazines that my father brought me (“There’s nothing worse than not having something to read,” he’d say to me as he’d deposit the latest issues of “People”, “US”, and “Entertainment Weekly” on my bedside table.)

He also brought me the latest “Harry Potter” book right after my stroke. There was no reason to believe that I couldn’t handle it. We’d established that the stroke hadn’t damaged the “machinery” in my head that would make life *really* difficult to live. I could swallow, so my food didn’t have to be pureed (and when I saw the pureed diet in the rehab hospitals, I thanked my lucky stars for that!) I could talk, and I didn’t appear to be experiencing deficits in my speech. My vision didn’t appear to be impaired, although I’d have to have further testing on my visual field done.

The Scare of My Life

However, when I started to read the “Harry Potter” book, I was stunned and terrified. I found that, while I had no problem reading and understanding the lines of text, I couldn’t link them together. I felt like each time my eyes dropped to the next line, I had skipped a line and jumped out of place in the paragraph. But there was no way to find the line that fit, because I *was* reading the line that was supposed to fit; my mind just didn’t recognize it.

My father was in the room with me. I started to cry. “I can’t read,” I said. “The lines don’t make sense.”

“What?” he said.

“This line doesn’t come after this one,” I said, pointing to a paragraph in the book. “My mind doesn’t understand it.”

I’m sure my father had no idea what I was trying to say, but he got a nurse in there and between the two of them they got me to accept that this could just be a temporary side effect of the surgery (which it was). I just had to be patient and take it easy and do the best that I could.

Which would become the theme of the next several years.

If there’s anything truly fortunate about the way things went with my AVM, it’s that I found out about it by having a small stroke that caused no damage. Yes, ultimately I had a larger stroke that caused significant damage; but if I hadn’t had that smaller, warning stroke, the same thing (or worse) could have come from seemingly nowhere in a situation where other people might have been hurt (like, when I was driving a car or holding a baby). This way, I chose to go into surgery knowing that something like this could happen…and at least I won’t have another stroke from an AVM. I rolled the dice on a surgery with risks…this is what I got. And all things considered, I came out pretty good. Plenty of people have come out of the same surgery in a lot worse shape.

So I try to remember to count my blessings. More on that later.

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Supporting People with Intellectual Disabilities: Difficult Conversations

Last night, as I was flipping through the channels I happened to catch an episode of “Law and Order: SVU” that dealt with intellectual disabilities. I’m always interested to see how the media portrays people with disabilities, so I decided to watch.

People with Intellectual Disabilities and Sexual Assault

“Law and Order: SVU” is always interesting, but it’s rarely easy to watch. Some episodes are easier for me to handle without wanting to burst into tears than others, but it’s the only show on television that makes me consistently ask myself, “Can I really handle this?” Last night was no exception; the show was about a young woman with Down’s Syndrome who was pregnant as a result of a rape, and the numerous issues that come out of that particular situation.

People with disabilities (in general, not just intellectual disabilities) are, unfortunately at much higher risk of sexual assault. The California Coalition Against Sexual Assault reported in 2001 that 15 000 to 19 000 people with developmental disabilities were raped per year (California Coalition Against Sexual Assault, “Serving Survivors of Sexual Assault with Disabilities”, 2001). I couldn’t find more current statistics, but I shudder to think what they are now.

The Importance of Having the Difficult Conversations

The statistics I quoted above scare me, but they also strengthen my resolve not to avoid difficult conversations. I’m not a mother, but I’ve had enough conversations about sex with people with intellectual disabilities, people operating at a teenage mentality or lower, to know that it’s not fun for anyone involved. It’s not comfortable to have to ask people if they know what sex is (and to sometimes have to explain) or ask if they’ve thought about birth control. But damn it, it’s necessary. The people I support may be, mentally, in their teens or younger. But they’ve got adult bodies, complete with adult sex drives. They need to be prepared for the possibility that they may choose at some point to have consensual sex.

They need to also be aware that not all sexual contact is good. They need to know the difference between “good” and “bad” touch, and what they need to do if someone ever touches them in a “bad” way. Because, as much as we’d like to be able to protect people with intellectual disabilities from all the bad that’s out there in the world, it’s just not possible to do so, or responsible to believe that it can be done forever. The harsh reality is that eventually the parents of these adults with disabilities aren’t going to be there to protect their kids. And while that doesn’t mean that the adult with disabilities is necessarily going to be out on the street, having as many skills and as much knowledge as possible – including at least a basic awareness of issues around sexuality and sexual safety – is going to make the transition to whatever comes next all that much easier.

It’s much easier to have these difficult conversations than to have to hear, as the mother on the SVU episode did, that your daughter with intellectual disabilities is pregnant as a result of a rape. In the name of their safety, people with intellectual disabilities need education appropriate to their developmental level (not just once, but again and again) about sexual safety just as much as people without disabilities do.

I’m not going to even get into right now some of the other issues that the “SVU” episode raised: competency and capacity assessment, the debate about whether people with intellectual disabilities can raise children, who should get to decide what when it comes to individuals with intellectual disabilities…but you can bet that I’ll revisit these things at a later date.

Please remember, though, that I don’t claim to have all the answers…when you get into questions like these, nothing is black and white and sometimes it seems like the “right” answers change by the day. If there’s ever anything that you’d like me to talk about in a more in-depth manner, or do more investigation into yourself, let me know; I’ll either do some more research myself or point you to resources where you can find out more.

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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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Someone In There

I watched “Awakenings” this weekend, which is a movie about people with multiple and profound disabilities. It’s one of my favourites, though not one I watch very often.

“Statues”

“Awakenings” tells the story of Dr. Malcolm Sayer (based on Dr. Oliver Sacks) and the success of his idea to administer the drug L-Dopa to a group of people that had survived encephalitis. The people in question were hospitalized for essentially being “living statues” – unable to move or communicate, unresponsive to most stimuli, and assumed to lack capacity to respond to the world on even the most basic level. High dosages of L-Dopa caused an “awakening” in these “statues”, bringing them back (albeit briefly) to a place where they could interact fully with the world again.

“Feed and Water Them”

I know from reading reviews of “Awakenings” (the movie) that the science behind it is representative of what went on in Sacks’ actual experiments. That’s interesting, but it’s not what was has me thinking that I would like to read Sacks’ account of his work (also called “Awakenings”); I’m more interested to see if his motivation for starting work with  these patients was the same as the Sayers character’s in the movie. Sayers, played by Robin Williams, observed signs in the “statues” that convinced him that there were people inside them, despite their profound disabilities, that could be reached: they caught objects, they exhibited purposeful behaviour, they responded to music (but each one to a different type of music) and to touch from others. No one had ever noticed before, because no one had taken the time to try to see if there was a way to reach these people.

“We call this ‘The Garden’” an orderly explains to Sayer about the ward on which his patients reside. “Because all we do is feed and water them.” Everybody, even the doctor who had first identified encephalitis as the cause of the disabilities (Dr. Peter Ingram, in the movie), figured that there were no longer people in those bodies to reach. Sadly, I still see the “feed and water” perception about people with profound disabilities from time to time.

I’ve spent the better part of an hour now looking for a website that I found just after the last time I watched “Awakenings”, several years ago. I haven’t been able to find it, but I remember being very moved by it.  The young woman who wrote it had lived with profound disabilities and been unable to communicate for over half her life, and then become able to; her thoughts about how frustrating it had been to live in a world where everyone assumed that she was just an empty body with no awareness of her surroundings were eye-opening and heart-breaking.

Connecting with People with Profound Disabilities

I absolutely believe that even if all evidence is to the contrary, we have to assume that people are “in there”, and that it’s incumbent on us to, as much as possible, to figure out how people communicate and how to communicate with them. I don’t know any people with the specific brain damage that the people in “Awakenings” lived with, but I know plenty of people with profound disabilities that are totally reliant on others for their care, that can’t coordinate their limbs to the point where they can propel themselves in a wheelchair or reposition if uncomfortable, and don’t communicate in any traditional way. I’ve had discussions with people (discussions that have broken my heart) who don’t believe that people living with profound disabilities should have been allowed to live at birth.

The thing is, people with profound disabilities *do* communicate; I’ve worked with several of them, and I’ve seen it. One used to purse her lips suddenly as I helped her to eat, which I took to mean, “No more.” Another cried when certain types of music were played around him. And Frances, who I called “my dancer”, loved to sit on the couch in her family’s living room and stretch her long, graceful arms over her outstretched legs. She’d move her arms forward, and open them up, and turn her torso to stretch further…bring her arms together again and peek at me from underneath one of them, smiling widely. Sometimes I’d hold her hands as she moved, so that we did a dance together.

She loved to move like this; she didn’t even need music. I loved watching her.

Assume Someone is “In There”

In “Awakenings”, the Peter Ingram character says that the virus that had turned Sayers’ patients into statues “did not spare their higher faculties”. When Sayers asked him how he knew this, Ingram says, “Because the alternative is unthinkable.”

It’s more “unthinkable” *not* to consider the alternative, and potentially leave a person who wants to engage with the world without the opportunity to do so…when it may be entirely possible for us to help facilitate that engagement. This is one time when it’s *always* okay to assume – assume that someone’s “in there”, and that there’s a way to reach them.

Rent “Awakenings”.  It’s a great movie: http://www.imdb.com/title/tt0099077/

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