Recommended Reading for December 3

Disableism Impacts Families

This choice that is being forced upon me is impossible. I must either tolerate physical pain at the hockey arena or emotional abuse at the dojo, if I want to be a part of my child’s life. It’s ironic that disabled mothers are often viewed as incompetent but where is the discourse surrounding the ways in which our parenting often occurs under extremely difficult situations? I suppose, of all the people on the planet that Destruction and his brother Mayhem provide the best reason for me to want to rise above, but the constant pain requires more of a super human effort than I believe that I am capable of.

Murphy’s Law And Disability: The Week From Hell

Normally, we get by. We get by pretty well. Provided we stick with the diet restrictions, usually we just switch off when one is a bit more able to get things done than the other. Chores basically go to whomever is in less pain at the time, or in less of a bad mental state or who can actually do them reliably without issue (like me defocusing and being unable to even read a recipe because I can’t keep on it). Usually even when the chronic shit we deal with is flaring the other one is just dealing with the baseline of the chronic shit for them, and the other disabilities coming up are all spread out over time.

Not this week though.

This week was the perfect storm of flare ups, semi chronic appearances and stress induced aggravations of all of the various things we deal with on a regular basis. While my partner fought off a pain flare, struggling just to walk, I was nailed with a “Richter 7? migraine.

Accessibility and Gaming: Randomizers

Most traditional six-sided dice may be tactile enough that someone who can’t see could feel the result. There are also special “Braille dice” available for not that much more than premium gaming dice; they’re more properly called tactile dice since the faces are traditional die pips and not true Braille numbers.

So, blind players can probably get their hands on accessible d6s, but to the best of my knowledge there are no tactile dice made for any other types of dice. Champions, anyone?

The wrong message – still

I don’t know who dreamed up the concept of “disability simulations” but they have been around for a mighty long time. My lifelong friend, Michael A. Winter, now the Director of Civil Rights for the U.S. Department of Transportation, first exposed me to the shameful practice. Michael and I were classmates at a segregated school for crips and met in 6th grade. We attended the same university. As undergrads, Michael formed a group called Wheelchair Action. When the Rehabilitation Institute at Southern Illinois University sponsored a disability simulation, Michael and members of his group stormed into the classroom and tried in vain to halt the fiasco.

Professionals who are nondisabled rarely stop to listen to the people who live with disabilities. I was proud of Michael for trying to get people to understand how destructive these simulations can be.

What Makes A Good Doctor?

Dean Tom Marrie is interested in hearing what kinds of qualities people value most in their family physician or specialist. What do you appreciate about your doctor? What do you think physicians of the future will need that might not be taught at med school today?

23 Comments

  1. I just wanted to pop by and say thanks so much for the link love. It is really appreciated. Writing about the effect of my disability is incredibly difficult for me and it validates this struggle each time you link to it. I want to take the opportunity to once again thank you for a space where my body is not the issue but the world around it is.
    .-= Renee´s last blog ..Patrick Stewart speaks to Amnesty International about Violence Against Women =-.

  2. Wow… I didn’t expect our experiences that week to get linked. I wasn’t the one that wrote it, I acknowledge this, but I hope our experiences can help people here as well as on RP’s blog. Even if only in the sense that “you’re not alone”.

    Thank you, it means a lot.

  3. Oh wow, thank you for the link. Also, question, how did you folks get that text size adjusting thing in there? Is there a way to put that onto WordPress? I’ve been trying to boost accessibility on my blog.
    .-= genderbitch´s last blog ..Murphy’s Law And Disability: The Week From Hell =-.

  4. It’s a WordPress plugin, genderbitch; WP-chgFontSize.

  5. From “The Wrong Message”:

    I contacted the school’s psychology teacher once and tried to get Disability Simulation Day stopped. It was a lost cause. She liked having Disability Simulation Day featured in the local newspaper, and saw no need for me or my husband — or anyone from our local independent living center — to come to her classroom to talk with the students.

    what. A psychology teacher. You’d think that’d be one of the few people who might realize how demeaning these sorts of things are. Wonder if she’d understand it any better if it were put in terms of mental health simulations? Probably not, given how much mental health is also misunderstood.

    And a huge yes on people not understanding that PWD learn to work around disabilities rather than viewing them as insurmountable obstacles. In fact, that also ties into the “why don’t you want a cure?” issue. If I were cured, I’d have to relearn how to do so many basic tasks– not to mention that, because of the sensory aspects of my disability, the very world around me would suddenly become something that I’d have trouble making sense of with ‘normal’ perception.

  6. When I was in undergrad, a visually-impaired friend with a strong activist bent founded a disability-rights group, mainly populated by students who identified as having a disability. I’m pretty sure we did have an activity like the simulation for the rest of campus to participate in, and I don’t recall that it ever occurred to us that we were sending the wrong message or were being counter-productive. If there is internalized homophobia, maybe we had a degree of internalized ableism?

    (I remember I was disappointed in the ADD-simulation. That person’s brain worked a lot like mine; what was the big deal? I sure missed the clue-stick there!)

  7. My school has a walk a mile in her shoes day, illustrated by a “hilarious” drawing of hairy legs in heels. Basically, college guys walk around in heels.

    tg – I think it was a nice start, and if the people with the spoons/time to start the group next year/semester (oops, “when I was an undergrad” = “when dinosaurs roamed the earth” :P)… anyways, as long as they move away from that to less insulting activities.

    Actually, why I understand that’s its offensive, I think it’s a great way to drive home the reality, but then again, all it does is show how “hard” life is. It doesn’t show that life is still life, and someone who uses a wheelchair is just as likely to hurt the person who dragged them away from a new episode of their favorite show as someone without. I’d want to superglue somebody in charge of budget cuts to a wheelchair, set them loose, and then see them justify their hideous decisions.

    And now I’m thinking of how somebody would simulate my disability. I think they’d probably die, since I usually use the words “knives” and “stabbing” to describe it.

    So that’s a shortsighted attempt. Yeah, plop ’em in wheelchairs. But what about those of us trapped by our destructive thinking? How do you recreate that? Fibro? Stick them in medieval torture devices? (Not advocating hurting people.)

    So, what did you think of the 30 days episode where the football player (I think. he was a successful athlete with money) spent 30 days in a wheelchair? He got his butt kicked in wheelchair rugby, talked about sex with this other guy. The money was important – he could afford to temporarily make his house accessible. The other guy (talked about sex, had a tricked out truck (oh southern boys)) didn’t, and his house was small and full of scuff marks from the chair.
    .-= Kaitlyn´s last blog ..My depression is mean. =-.

  8. And let me confess my shame.

    When my sister and I visited my grandparents in New Mexico, we closed our eyes and wandered around the property (actually around the outside of the house – which was half underground, so you could just lean back on the roof. Love that house!). I’m sure we did that at other times, but I clearly remember doing it in NM.

    (Of course, we also stuck baby dolls under our shirts and pretended we were pregnant – I was 8 or under and she wasn’t even 5.)

  9. When was the New Mexico trip shame? 1998. Or 2000. So I was 9/10 or 11/12, and my sister was about 3 years younger than me.

  10. They actually have a kind of autism-simulator here, they built it at the Leo Kannerhuis. I don’t know how they even figure that works in any way at all, even a very wrong way of just inducing pity. I went in it once at an NVA Autismecongres and I didn’t get any sense of anything, it was just a bunch of women (for some reason mostly mothers and female caregivers/teachers attend, far fewer males) chatting loudly with eachother about whatever stuff I couldn’t hear because they were ALL chatting loudly with eachother while some TV screens were rapidly switching images and some other sounds were just playing the whole time. Also there were some footsteps painted everywhere, I think that was to point out something like “walk a mile in my shoes”. It’s built in the shape of a giant head too, something like people can get inside our heads? It’s worse than useless, but everyone seemed to think it was really great.

  11. @meloukhia: Is it possible to hook a plugin into a blog that’s hosted on wordpress itself? Or do I need to host my blog myself to use it?
    .-= genderbitch´s last blog ..Murphy’s Law And Disability: The Week From Hell =-.

  12. I, uhm, have no idea? I’ve never had a blog set up on wordpress.com before; maybe someone here has and does know?

  13. About disability simulations: A highschool acquaintance of mine used a wheelchair for months because of a football injury. When writing for the school paper about it, he wrote about access issues rather than pity, which I thought was pretty great. At the same time, I see now that there are some serious issues with privilege there, because an able-bodied-most-of-the-time person was given a public forum to speak about a disability issue when, as he pointed out, a full-time wheelchair user would not have been able to attend our (supposedly public) school at all. PWD shouldn’t need TABs to point out access issues, ideally.

    The autism simulation which Norah described sounds truly awful. I feel pretty confident in guessing that no autistic people were involved in creating such a monstrosity. It sounds a bit similar to what House tried to do in the autism episode, by showing autism as a shaky camera and weird visual and audio settings. Urgh. I’m all for making non-autistic people realize the sensory hell which their world regularly inflicts, but not in such ridiculous “stimulations.”

  14. Well, I don’t want to disappoint, but I think there were autistic people who live at or attend the Leo Kannerhuis involved. I think that it was never pointed out to them why simulations not only don’t work, but make things worse. I know that before it was pointed out to me, I didn’t get it on my own. Afterwards it seemed so obvious.

  15. I was talking with my mum the other day about building requirements for wheelchair users, and she was convinced that putting able-bodied people in wheelchairs would be a good way for them to get a sense of what was required for accessibility. I think she thought it would work in a purely tactical, practical way, rather than an emotional, “learn how it feels” kind of way (and also that she was underestimating how quickly a non-wheelchair user can get acclimated to using a chair effectively so that it would be an accurate simulation). We debated it for a bit, but I couldn’t convince her that there were more negatives than positives to be had out of that kind of experience.

    That being said, it occurred to me later that she’s a very hands-on, “don’t tell me just let me try it” kind of learner, and doesn’t pick up on things as quickly or thoroughly if she’s trying to parse a verbal or written explanation, rather than just do it herself. I think that maybe, possibly, with some very careful guidance from someone who can cut through any ablist bullshit and realistic, meaningful parameters to the tasks (i.e., not just random difficult things designed to evoke pity and embarrassment, but real-life things like trying to get a wheelchair over “just one step”, or trying to read small signage in overly dim lighting), that kind of simulation approach might be helpful for that particular learning style in shifting one’s understanding about accessibility. But not as these emotionally-pornagraphic pity parties of wholesale ablist bullcrap that get touted as “progressive” and “challenging” and are just clueless.

  16. I want to campaign a neurotypical simulator. I want to spend a day in the shoes of someone who doesn’t blame themselves for everything, who doesn’t look at EVERYTHING as they’re walking down the street. How could we possibly understand bigorty, and appropriately pity people, if we can’t walk a mile in the shoes of the neurotypical?

    Yes, this is snarky. Not sure if it’s coming across right, but my point is that “disability simulators” are ridiculous and demeaning.

  17. And it occurs to me now that I focussed on neurotypical people, because I’m not one, but I’m in no watt implying that all neurotypical people are bigotted or TAB.

  18. Actually I found a link, but it’s in Dutch. In case anyone still wants to check it out: http://www.hoofdkwartier.org/pages/begin.htm
    The little text on the starter page (the shoes are different links) talks about how professionals and other interested parties can now get a better idea of what autistic people face every day to increase understanding and such.

    If it’s ok, I’m going to paste and translate a bit from one of the other links here. (otherwise just delete that part of my comment, maybe it gets too long):
    “Mensen met autisme hebben er recht op om deel uit te kunnen maken van de maatschappij. En daarvoor is het nodig dat de maatschappij autisme leert begrijpen. Hoe is het om een autisme spectrum stoornis te hebben, hoe voelt dat in je hoofd en in je hart? Tegen welke problemen lopen mensen met autisme aan?

    Dit inzicht is nodig om de vertaling te kunnen maken naar wat mensen met autisme nodig hebben om er écht bij te kunnen horen.

    Het Dr. Leo Kannerhuis heeft het idee uitgewerkt om buitenstaanders te laten ervaren wat mensen met autisme voelen, denken en meemaken. Het gaat er dan niet om hoe de buitenwereld naar mensen met autisme kijkt, maar om de beleving van henzelf, van binnenuit..

    Samen met cliënten, ouders en behandelaars is een project opgezet waar bezoekers door middel van beeld en geluid kunnen ervaren wat er in hoofd én hart van mensen met autisme omgaat. Het hoofdkwartier wil bezoekers laten voelen wat mensen met autisme dagelijks ervaren.

    Het hoofdkwartier is een multimediaal theater gevormd door een groot hoofd van stalen stroken. In het hoofd is plaats voor negen mensen die door middel van beeld en geluid mee worden genomen in de belevingswereld van een persoon met autisme.”

    Translation (inserts [ ] are mine):
    “People with autism deserve to be a part of society. To achieve that goal, society needs to understand autism. What is it like to have an autism spectrum disorder, what does that feel like in your head and heart? What problems do autistic people face?

    We need these insights to be able to puzzle out what people with autism need to really belong.

    The Dr. Leo Kanner house worked out a way to let outsiders experience the feelings, thoughts and experiences of people with autism. It is not about the way the outside world looks at people with autism, but about their experience from the inside..

    Together with clients, parents and professionals [like psychiatrists or people in charge of group homes] we set up a project that lets visitors experience what goes on in the heads and hearts of people with autism, by means of visuals and audio. The Hoofdkwartier [Headquarters, a literal and very accurate translation] is intended to let people feel what people with autism go through daily.

    The Hoofdkwartier is a multimedia theater shaped like a giant head made out of steel bars. There is room inside the head for 9 people, who will be carried into the world of the person with autism by means of sound and imagery.”

    This sort of says it all, everything that’s wrong with it is right there.
    .-= Norah´s last blog ..Identification =-.

  19. Kaitlin said:
    “I’d want to superglue somebody in charge of budget cuts to a wheelchair, set them loose, and then see them justify their hideous decisions.”

    Now THAT ought to be mandatory!

    @ Genderbitch and Meloukhia, (and anyone else interested)
    WordPress.com won’t let you use the WP plugins as far as I know, but compared to other blog hosts they have a ton of features and constantly improve and introduce new stuff, so I’m guessing they’ll develop something like this in the future. (Keeping my fingers crossed here…)
    .-= Kowalski´s last blog ..YouTube Thursday =-.

  20. So, what did you think of the 30 days episode where the football player (I think. he was a successful athlete with money) spent 30 days in a wheelchair?

    Ah, the Spurlock thing? I reviewed that a while back, summing up thus:

    Tl;dr:

    “At first, I thought that if I ever had a spinal injury, I’d kill myself!

    Then, I realised that people with disabilities are human after all.

    Shit, am I glad to be out of that chair!”

    Yeah, I really shouldn’t have expected “insightful” from Morgan Spurlock.

    Spurlock’s “30 Days in a Wheelchair”: A curmudgeonly synopsis (or two)

  21. I was at dinner a couple weeks ago trying to relax and enjoy my soup and the people at the next table over were having a conversation that included way, way too much of how cool it was when they did the disability simulation stuff in physical therapy training. I had my cane with me that day so my disabilities were not so easily disregardable. It felt really ugly — this person was Really! Excited! It was all So! Interesting! They put goggles on them that simulated visual impairments and taped their joints for mobility issues like arthritis and ALS and I wanted to scream.

    Do neuro/physiotypical people really get anything out of these exercises except how fucking cool it is to not be us? To be able to take all that shit off and be healthy and normal and fully human?

  22. I just find it odd that there needs to be this “understanding how it is to be disabled” in order to have acceptance in society.

    I don’t need to understand what it’s like to be a full-time wheelchair user, or to have CFS. People with CFS or Autism, or who use wheelchairs, or who are blind have told me, and I believe them. I’ve read their books, blogs, editorials, whatever.

    What, if I spend a day in a wheelchair I’ll suddenly be enlightened because my able legs will suddenly sort it all out?

  23. Regarding disability simulation things…

    I agree that the way they’re done usually is nothing short of horrific, but I’m not quite prepared to write off the entire idea as doomed.

    I think one of the issues is that not all disabilities get the “oh my god, your life is so horrible and awful and I’d kill myself if I were you” treatment – some of us get the “you’re faking! You’re exaggerating! You’re making things up for the attention!” I know that there have been times I’ve sorely wished I could lend a person my hearing for a day! (Noise sensitivity not being something that commonly gets a lot of empathy.) It reminds me of how people decry the “brave cripple” trope, but how OTOH abled people will often dismiss things as nothings and person-being-fussy that actually do require quite a bit of bravery which I wish got recognised. Of course, since it’s the underlying ableist attitudes that are the problem people might easily flip straight into the “that’s so horrible! You’re so brave!” mentality so it’s a very delicate thing to play with.

    But there’s another thing where I think disability simulations might be helpful, and that’s in recognising ableism.

    I read a few blogs by people who stutter, including one by someone who also teaches students studying to be speech and language practitioners, and he talks about making his students do a pseudostuttering exercise annually and links to a study about this. I’m not so keen on the “learning about the lives and experiences of their clients” bit for reasons that have already been mentioned, but I think this could be a way to make such students realise both their own ableism – negative attitudes they hold about stuttering which become obvious when they’re engaging in it – *and*, quite importantly, ableism from their surroundings. I suspect that a day wandering around pseudostuttering could help fluent people realise what kind of stigma stutterers face and how that can influence the way people react to them. If I’m going to be really optimistic, maybe some of them will even realise that the whole “nervousness and anxiety causes stuttering!” thing has cause and effect backward…

    So I wonder if a disability simulation that is framed a la social model would work, one where people are specifically instructed *not* to try and generalise to what a person’s life must be like and perhaps told some of the reasons why it’s simply not possible to accurately judge it from such an exercise, but instead told to watch out for things that might pop up in their mind (e.g. “god, I sound so stupid like this” or “everyone’s going to think I’m an idiot” for pseudostuttering – does that mean you think people who stutter sound stupid? Would you think a stutterer you met was an idiot?) and see whether people react to them differently.

    Of course, this might still not work, I suspect people will need to have at least some background in disability 101 for it to even have a chance, and given the disability simulations I see described in the comments it might be best to just abandon the idea entirely.