Why Don’t Non-Disabled People Trust People With Disabilities Anyway?

Disability simulations and disability awareness days are condescending and patronizing towards people with disabilities. Instead of “raising awareness” about the “struggles” people with disabilities face, they end up raising awareness of how difficult it is to be a first-time wheelchair user, open bottles with socks on your hands, or navigate spaces with your eyes closed. They do not actually teach anyone anything about disability.

 


 


 


 

I suppose it would be wrong to end the post there.

First, a bit of context. Last week marked the third year that some Canadian Members of Parliament (federal representatives) – including my own, Megan Leslie, and the NDP party[1. NDP = New Democratic Party. They’re our more-left-of-center-than-the-Liberals party in Canada. In the UK, they’re like the LibDems, in Australia, I think they’re like the Labour Party (but I’m not sure) and in the US… well, in the US, they’re scary socialists who want universal healthcare and support unions and are pro-choice, so they’d be non-existent in your current political environment.] whip [1. The party whip is the person in a political party who ensures that party members are present for key votes and that they vote in line with party policy. The Wikipedia entry looks pretty good.] Olivia Chow – spent a day on the Hill attempting to do their jobs while using a wheelchair.

Second, important information. This year event is co-sponsored by the Canadian Paraplegic Association as part of Spinal Cord Injury and CPA Awareness Month. While their website refers only to the 2009 event, I’m assuming the relevant information is similar:

Several Members of Parliament and Senators have spent one day in May in a wheelchair. They conducted their normal working day having to make time allowances for simple things like finding wheelchair accessible shuttles and washrooms. They were only allowed to leave their chair while in the House of Commons as there is only one wheelchair accessible spot on the floor for the Parliament Hill event co-sponsor the Honorable Mr. Steven Fletcher.

I think it’s clear that not every disabled person agrees with my assertions about disability simulations, but I have some very strong reasons for describing them they way I do. Some of those reasons are best demonstrated by Olivia Chow’s tweets throughout the day. [You can see this all in context at her twitter. The event took place on May 12. Ms Chow tweeted throughout the day. Ms Leslie also tweeted about her experience, complete with pictures.]

Olivia Chow’s tweets throughout the day really irritate me. She did a series of tweets about the barriers facing wheelchair-users in Ottawa: …lack of curb cuts, bumpy sidewalks, washrooms too small, tables w wide legs…; …hills, doors that don’t open automatically, heavy chairs, elevators shutting too quickly…; Most of these barriers can be overcome by better design, government that understand disability and kind pp willing to help.

Actually, Ms Chow, all over those barriers can be overcome through better design, and while it’s nice if a government “understands” disability, I would really rather they listened to people with disabilities instead.

What Ms Chow’s tweets did is emphasize that, both as an MP and as a former City Councillor for Toronto, she doesn’t trust people with disabilities to actually be telling her the truth about their experiences. Instead, she tweeted
I wish I had this wheelchair experience day while I was a city councillor as a lot of barriers are gov by municipal code.
and Maybe I should work w the Canadian Paraplegic Asso …and challenge councillors to spend a day using wheelchairs.

Actually, Ms Chow, I have a better idea.

Why not challenge the City Councillors, and the MPs, and anyone else you know who has government power to talk to people with disabilities about what their needs are, instead of deciding that spending a day in a wheelchair gives you some special insight? (Especially egregious to me is that the nice people playing dress-up in their wheelchairs for a day could instead have asked Steven Fletcher, the Conservative MP for Charleswood—St. James—Assiniboia, Manitoba, who is a full-time wheelchair user. He might be able to shed some light on issues of accessibility in Ottawa. Mr Fletcher does support this disability simulation, but this doesn’t actually prevent anyone in Parliament from asking him about it anyway.)

It really disappoints me to see the NDP participate in these so-called disability simulations rather than use their power to highlight the voices of actual people with disabilities when discussing their accessibility needs.

Canadians with disabilities campaign constantly for their voice. We don’t need Olivia Chow, or Megan Leslie, to go around for a day tweeting about how inaccessible Ottawa is. We need our elected representatives to actually listen to our concerns. We need them to take those concerns seriously, and present them to their Party – be it NDP, Liberal, Conservative, Bloq, or Green – and to our Government. We need politicians and policy makers to believe that our voices are the ones that define what our accessibility needs are, not a day-long experiment.

I know that going around for a day in a wheelchair gets attention and kudos from the currently non-disabled. I’d rather that attention be offered to the people who continue to be notably absent from our Houses of Government.

26 thoughts on “Why Don’t Non-Disabled People Trust People With Disabilities Anyway?

  1. “I would really rather they listened to people with disabilities instead.”

    This is a problem in educational settings too (especially higher education, where the office that provides services to disabled students typically has no direct contact with instructors), where instructors and department administrators seem to have a hard time actually listening to students with disabilities telling us what they need. Or they only make an effort to meet the minimum accommodations described in their letters (I proctored a test a while back for students who needed a quiet room instead of the noisy lecture hall, and the room provided for us was basically a closet with a window that looked out on the alley. We had to listen to delivery trucks drive by the entire time, and one student in particular was very distressed by the situation. I felt terrible.)

    I think that some people carry around the perverse (not to mention discriminatory) perception that if you let these students set the terms, they will try to game the system somehow, or that the potential for a non-disabled student taking advantage of the situation is way way worse than making life hell for the disabled students.

    But I think, in some cases, that non-disabled people are just much more comfortable talking around disabled people rather than talking directly to them. Some of that is discomfort with acknowledging the disability, thinking it’s rude or something, but in general, privileged people feel so much more comfortable talking about non-privileged people when the privileged people set the terms of the debate, because doing otherwise might be hard.

  2. The same reason people listen to Tim Wise (white) instead of Jesse Jackson about racial issues – something Wise acknowledges in his speeches.

    An outsider is “objective”.

    With people in government doing this… shouldn’t it result in a more accessible Canada?

    Otherwise it’s just a vote-getting stunt, more pandering. I did like

    And why isn’t the Parliament Hill accessible? WTF man?

    Ms Leslie’s ended with such a cliche – a shot of her feet with the caption “My experience was only a memory: I get to walk away.”

    Use your memory to do something! If the NDP is as “left” as it sounds, it should be doing more to make Canada a “nanny state” to HELP PEOPLE!

  3. I’d love for a PWD who uses a wheelchair to tweet a day in their life, complete with pictures. (This requires privilege – time/spoons to tweet, a camera, access to a computer/cell phone with internet)

    But it would have to be somebody with an audience that’s not just PWD/TAB allies. You’d need to bring somebody new in.

    People are shouting (well not SHOUTING online) all over the internet from a marginalized POV, yet they’re ignored ALL THE TIME. A non-Muslim white woman puts on a burqa/niqab for the day and makes erroneous assumptions about Muslimahs who cover.

    A TAB spends the day in a wheelchair…

    Google is your friend, people! You don’t need to dress up or use props to discover “what’s it like,” you can read what women say (around the world), what Muslimahs who cover say, what PWD say, what non-White people say… on and on.

  4. “With people in government doing this… shouldn’t it result in a more accessible Canada?”

    It’s been happening for three years now and I’ve not seen anything. Heck, we’ve had an MP whose a full-time wheelchair user for a long time now and Parliament is still inaccessible.

    I like Megan Leslie, but this is because I’ve met her and respect her work. I’m really unimpressed with her whole twitter & twitter-pic thing, though.

  5. It’s rather shameful but people don’t seem to fully understand the things they hear unless they experience it for themselves. That is a clear difference between hearing and listening. People, politicians especially, don’t bother to listen. I understand that disability simulations are insulting but putting them in that replicated situation may get them to actually understand what people are trying to tell them. It’s shameful but effective. I’m not in a position to say whether or not those means justify the ends, though.

  6. ladysquires, I’ve worked in higher education for a while, and it was basically drilled into us from day one that we DO NOT allow any accommodations other than those listed by Disability Services. It’s not so much because the disabled student might take advantage, but because a non-disabled student might — if a student tells me she has ADD and needs extra time on a test, and I allow it without all the documentation, then some other student in the class could easily claim that the grading curve was unfair, since other students might have done better on the test if they also had more time.

    My usual solution is that I tell the student to get all the forms from Disability Services, and THEN I talk to the student and make sure that the accommodations the student says he or she needs are the same as the ones that the form says I’m allowed to provide.

  7. I have yet to find anyone who participated in a disability simulation and came away from it with the ability to listen when people with disabilities actually talk about what their needs are. The last person I talked to who did one, about the only effect it seemed to have was she became aware that accessible transportation must be booked in advance. From what I can tell, she did nothing with this information.

  8. Ruchama, I don’t think Ladysquires was talking about making accommodations without knowing whether or not those accommodations are legitimately required.

    I felt that she was talking about the accommodations *provided* not always matching up to the accommodations *needed* – the one-size-fits-nobody problem.

    So to take your example of “extra” time on a test for a student with ADD – it’s all very well for Disability Services to offer that, but there needs to be room for the student to say “that’s nice, but I don’t need any more time than other students, I just need to sit the exam in a room where I can stand up or whistle or look round without disturbing other students.”

    The response of Disability Services AND of teaching staff needs to be “okay, let’s see if we can sort that out,” rather than “no, we don’t do that, we only do extra time, take it or leave it.”

    (And personally, I find “I’m not even going to think or talk to you about these issues right now – first you have to jump through hoops and fill out a truckload of paperwork to prove that I’m obliged to think about your needs, and THEN we’ll talk,” to be a less than supportive attitude to take with a person who’s swallowing their pride and asking for help. I appreciate that you can’t always just *give* the accommodations on the spot, but surely you can afford the headspace and time to talk for a student experiencing difficulties with their education? Or is it somehow better that students with genuine unmet needs feel rejected and unsupported from the outset, in the name of preventing the occasional chancer from getting some slight accommodation they didn’t really need?)

  9. Ruchama, this isn’t a criticism of you but of a deeply flawed system.

    The default presumption seems to be people who ask for accommodation are lying to gain an unfair advantage over others. The complaints of the privileged that they are not privileged enough — hypothetical and actual — are given primacy over the needs of the marginalised. So to pre-empt the complaints of currently non-disabled students that disabled students are somehow getting an undeserved advantage disabled students have to do a whole lot of work CND students don’t have to do. If Disability Services delays making a determination on what accommodations are reasonable — as ever by the standard of a reasonable CND person — that student gets no accommodation at all. It may be too late to salvage ou academic standing by the time Disability Services does make a decision. It’s unfortunate for the disabled student but at least the CND students aren’t kicking up a fuss.

    Oh hi there, systems unfair in favour of the already-privileged. Didn’t we meet at affirmative action? And at gender identity? And at marriage equality? And…

  10. So to take your example of “extra” time on a test for a student with ADD – it’s all very well for Disability Services to offer that, but there needs to be room for the student to say “that’s nice, but I don’t need any more time than other students, I just need to sit the exam in a room where I can stand up or whistle or look round without disturbing other students.”

    That’s what I meant when I said I talk to the student to make sure that the accommodations on the form are the ones that the student feels he or she needs.

    And any student who has a need that I can reasonably meet without needing the paperwork, I will. When a student told me that he was hard of hearing and needed me to face him while I was talking, I adjusted and did that as well as I could. (The layout of the room made this difficult, but that’s another issue.) When students have come to me for help during office hours and told me that they were dyslexic or had ADD or anything else like that, I’ve asked them how they tend to learn best and what sort of presentation they needed, and worked on getting that to them during office hours if it couldn’t be worked into the regular class session. I don’t really think of these as accommodations, just as teaching. If my regular office is noisy while a student is there for help, I’ll ask the student if he or she wants to move to a different room.

    The times that I’ve told a student that I couldn’t do something without authorization from Disability Services were times when the student specifically asked for either extra time or a quiet room. At my university, the quiet room requests are pretty much always filled in a special quiet room at the Disability Services office — I drop off the test there the day before, and the student goes there instead of to the regular classroom on the day of the test. (This, of course, creates the issue that, if the student has questions during the test, the instructor isn’t there to answer them. So sometimes the student will take the test in a nearby empty classroom, but that only works if there actually is a nearby empty classroom.)

  11. The one good thing my uni’s disability office does is that they’re going on stuff from fall ’07, my first semester. So I don’t have to re-submit each semester. I do have to meet with them, but no running to the doctor and waiting and waiting…

    I did have to get a doctor to call last semester when I missed a month last month. I forget why, and why it was my PCM and not the one who takes care of pain. But it was easy, since I was at home, though I worked myself – a week off and no documentation!

    But this semester, when I needed a table instead of a desk, they came through quickly and I didn’t have to submit something from Dr Ego saying I was in pain.

    Most of my professors/teachers have not been concerned with whether I “really” need something – I’ve been a teacher’s pet all my life, I’m a good kid.

    But those concerns about “abuse” used to make me afraid to ask for help.

    Something test related but only quasi-disability – for 2 of my tests in one class this semester, bad timing, I was expecting a call from a doctor and needed it on. I said I wasn’t cheating, I could go sit elsewhere (near the professor), but he was like, whatever.
    And during a presentation, I did the same thing. And as (bad)luck would have it, my phone rang just as I was about to start my presentation! But my professor in that class is even more awesome.

    And a professor I didn’t like very much asked me if I needed a separate room for testing when I gave her the sheet from disability, since it had nothing specific on it.

    I only needed a separate room in 10th grade for the state test, because of the asinine rules saying no one can leave when they finish. Not timed, so everyone has the time to do the test, but still. Sitting there. Argh. At the time, I was healing from a skin infection on the back of my legs/butt… well not too bad at that time, but hey, a reason not to sit there forever. So I needed a separate space because I needed less time. 😉

  12. @Ruchama: A quiet room requiring paperwork?! I have tourettes and I have NEVER needed paperwork to get a quiet room at my university. Granted, I have the paperwork anyway, because it’s does make it easier on professors (sometimes, actually most professors seem to prefer to provide their own quiet rooms rather than deal with disability services).

    I just don’t see why paperwork should ever be necessary for a quiet room. There’s simply no conceivable way that a quiet room could give an abled person some kind of special advantage. The whole idea of requiring medical documentation is absurd.

  13. Almost every time that one of my students has requested a quiet room, they’ve requested to use the room at Disability Services, and it was all dealt with through there. The one time that a student wanted to use an empty classroom near the usual room, she also had a bunch of other accommodations that did require paperwork, and it was just included on there, and that class was in a building that didn’t get much use, so there were several empty classrooms to choose from. I’m not sure what the procedure would be if a student needed a quiet room and there weren’t any empty classrooms nearby.

  14. Universities have all kinds of strange policies. Professors sometimes don’t have a lot of autonomy in adjusting accommodations. I’ve been on both ends of it (student and TA/ teacher) and it can be frustrating either way.

  15. I’ve been pretty lucky in classroom accommodations in my undergrad career; I go through disability services to get interpreters, but just about everything else I need (an alternate testing place, if exams are in the testing center that’s not accessible, permission to use a laptop during exams) the conversation has been along the lines of “Hi, professor, I need to type my exams, do you need documentation from disability services? Do you want me to use a laptop they provide without internet access?” “… [blink blink] that seems like a lot of work. I trust you with your own laptop”.

    Hasn’t been perfect, but it’s always worked out. Most vividly, I clashed with one professor who wanted to change the class’ meeting time way too late for me to get the interpreters’ schedules changed, but that didn’t even get as far as disability services – the department secretary overheard me complaining to a friend in the hallway, asked me to confirm which professor it was, and immediately called him and read him the riot act.

    I think I love my department.

  16. There was also a mayor candidate in Toronto who spent the day in a wheelchair and said that every subway station should be accessible. Well yeah, but you don’t need to spend the day in a wheelchair to realize that. The article about it did quote a couple wheelchair users though.

  17. Are they in the process of doing that, Lyndsay? When I was in Toronto, my friends implied they were.

    What worried me when I was there was how wheelchair users got safely on and off the trains. There’s a gap, and I didn’t see any buttons that I’ve seen elsewhere to keep the doors open longer or to extend a small ramp. 🙁

  18. I’m not sure. I found an article that said in August we will start getting new subway trains and “Each car will have two accessible areas (12 per train) with three individual fold-down seats. Guide strips will help visually impaired riders.” I don’t know if this will be better than what we have now. During rush hour subway trains are so crowded, there is no room for wheelchairs. Not enough subway stations even have an elevator.

  19. Lyndsay – I don’t know the situation in Toronto when it comes to money for the subway (we have the sandwich chain! yeah, I’ve never been on a subway)

    Could they do something similar to what Japan and Mexico City – where they had cars for women only, because the harassment was too much. (And too vague – it’s rush hour, was that an umbrella or not? Did he mean to touch me there or was it the jerkiness of the car?)

    I’m not saying a disabled-only car, but one where the majority of the seats are meant for those with physical disabilities – space for wheelchairs, guides for the blind, seats with space for those who need to sit and don’t *do* crowds without losing a lot of spoons…

    It could be open to everybody, but PWD could get priority – I remember when I rode the bus in Vancouver, if you were disabled, your monthly pass was a different color.

    I don’t know, just thinking.

  20. ..hmmm, i though Olivia Chow’s point was that we need to start listening to people with disability. She was using herself as an example to others who won’t listen to us but might listen to her. All her tweets said is what we say all along. She wasn’t trying to preach to the choir.

  21. If that was her point, why did she keep talking about how she thinks others should spend a day in a wheelchair to learn something? I think if her point is that politicians should listen to people with disabilities, she could have said that.

  22. Perhaps, she wants them to see things through our eyes. Sometimes that is the only way people will listen. If you tell someone something, literally, most often they won’t do it. It’s like saying to someone, “Over There! OMG!!! Don’t Look!” The first thing they want to do is look. If you tell someone who is not listening to the world around them that they are not listening they won’t hear you.

    It is an absurd role-play. Though, I don’t see how this hinders our cause.

    Olivia’s headquarters have a wheelchair accessibility ramp. Clearly she has listened. How many other politicians have that?

    She also speaks regularly and is involved directly with disability rights and queer rights and worker rights and heath care rights. She says so directly in her parliamentary dealings.

    “It is critical that every Canadian has the same rights and access.” Olivia Chow

  23. Is this about defending Olivia Chow, or defending Disability Simulations?

    Because while this post uses Olivia Chow (and Megan Leslie) as examples, it’s not about them. It’s about people – including Olivia Chow – saying things like “Now that I’ve spent a day in a wheelchair, I know what struggles people using a wheelchair face! I should get everyone to try this!”

    No she doesn’t. She knows how difficult it is to use a wheelchair for a day. That’s not the same thing. Neither is it the same thing when anyone else does it.

    As for Ms Chow having a ramp to her office – I don’t give out cookies for offices having ramps for the same reason I don’t give out cookies for offices having doors. They’re required so people can get in them.

    If the purpose of your comments is to defend Olivia Chow, I don’t think she needs it. Let’s stick to talking about the purpose of disability simulations, rather than whether or not Olivia Chow is a good person.

  24. I could only skim through this post before I started getting furious, but I just wanted to say thank you SO much for addressing this type of crap. We had something called ‘Disabilities Day’ in eighth grade (2003, at a top-rated public school near a major northeastern city in the U.S.) that was a lot like this. We all picked slips of paper out of a bag that would tell us we’d be ‘blind’ (blindfolded) or an ‘amputee’ (have one hand tied up) or ‘OCD’ (have to do something like touch a doorknob ten times before opening it) etc. etc. I actually HAVE OCD, and I remember thinking at the time that there was something very off about the whole exercise, but I could only barely articulate it. Now I realize– it was THIS.

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