Access: Respect, please
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Thanks, Victoria. My biggest issue with simulation exercises is when they focus participants too much on their end of the impairment/environment interaction that is disability. Nobody is going to find a wheelchair or blindfold or earmuffs easy to begin with, so the experience can reinforce tragedy stereotypes.
The experience of being stared at on the street can be quite instructive for some people. However, expert context-setting is essential to foster genuine understanding and respect.
I remember discussing this stuff on Radio NZ with producer Charlotte Purdy after the screening of her The Big Experiment tv show, but I can't see it on their site.
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It was essential for me to try and understand the experience of my two ASD sons, in order to anticipate the impact of various situations and stimuli on them, and thus guide our own actions as parents – and to fend off some of what we we got from special education people who really had no clue what was going on.
In the end, the big insight was simple: that their experience of the world is wholly different to mine.
But, yeah, I think being-disabled-for-a-day stunts are of limited utility.
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Simulation exercises tend to be beguiling to non-disabled people. This may be for worthy motivations, but they are of really limited use. There's American (and quite possibly from elsewhere) research that points out the negative impact of this "experience it for a wee while" type of simulation exercise. It is more likely to confirm impairment-as-deficit perceptions, perceptions that tend to accompany a lot of other negative disability stereotype. In short, tends to confirm those nasty suspicions. Victoria is right to point to a need to put respect into everyday action as the central issue.
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I'm not sure I agree with this totally. A friend of mine years ago as part of job training, had to simulate being deaf (she worked for a Govt dept at the time). She had to wear ear muffs for the day to simulate being hard of hearing. She found the day strressful, but gave her a lifelong appreciation of the difficulties she encountered that day, and it made her much more understanding when it came to dealing with people with hearing loss. That was twenty years ago, and she still hasn't forgotten.
I also spent a day in a wheelchair when I was recovering from an illness. It gave me an inkling of what people had to put up with as I was taken out into a public place. To this day, I am much more aware because my own experience, and if I see someone in a wheelchair, I immediately scan the environment to see if there are any barriers in which I can help. For example, the amount of abled people that push in a queue in front of a wheelchair is amazing. I was gobsmacked! So if I'm ever in a queue now and I see a wheelchair, I make sure others don't push in. These are little things, but can hugely impact the experiences of someone disabled. Had I not been in a wheelchair myself, I wouldn't have been as aware. So I do think simulations can help, even a little, and sometimes it's the little things that can make a huge impact.
I agree on everything else you wrote though - respect is of high importance.
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As I noted on Mojo's Facebook page the other day, ideally Norms would wear muffs from birth to get the full pre-lingual vibe of deafness. Extending the similie to breaking point, ideally you'd throw in some speech problem malware and a cocktail of drugs that induce tinnitus, high stress and chronic fatigue as well.
The lesson of the muffs etc is to increase tolerance and humility for the impossibly singular experiences of others. There's no similie that nails the full experience, but they're better than nothing.
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Kumara Republic, in reply to
But, yeah, I think being-disabled-for-a-day stunts are of limited utility.
'Walk a mile in my shoes' experiments seem to work up to a point. Either they provide insight to otherwise thoughtless ableists, or they reinforce the worldviews of thoughtless ableists.
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I agree with you Victoria but I also think some people participating in awareness exercises do it with the best of intentions. Last week several people participated in the NFD's exercise of wearing those yellow ear muffs. It was only for a short time, but were trying to bring the issues to the attention of the wider community rather than proclaiming any expertise for themselves after that short time. Those people I saw doing it, such as Grant Robertson on Breakfast TV, also engage with disability issues in their ordinary lives and generally try to be allies.
However, during the passage of the Disability Bill in 2008 there was one MP who came and told the group watching from the gallery that he knew about disability because he had once broken his ankle. That was disrespectful but he probably didn't mean to be. To his credit he was willing to learn and got a lot better over the years (as far as I could tell from recent select committees I have attended).
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If I could swap my deafness for hearing, I don't think I would - the world is FAR too noisy! But while I sigh about people not 'getting' different abilities, I suspect that for some, they do get it, because they have good empathy skills, and good cognitive skills, that enables them to imagine (they'd be good novelists) how it would be to have a different ability (be blind, be deaf, be crippled etc).
Personally, those ear muffs should have been on for a week. Then I'll really know if you understand what it feels like to have my deafness!
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Hearing is an interesting thing with my younger son. He has the same ears as I do, but I know he processes sound really differently. It's one of those things that manifests as a special ability or a disability, depending on context. He is put in psychological pain by unexpected loud noises, and a couple of experiences indicate that even with earplugs he's not going to handle live rock music. He sometime can't filter background noise, which makes many forms of socialising difficult.
On the other hand, he can hear through doors and I've sometimes wondered if he has perfect pitch.
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I don't find this kind of conversation very helpful. To me, it reads as an opportunity to put down others, those in government or anyone else that may take part in simulations.
You hate it when non disabled people stereotype people with disabilities, yet here you are stereotyping people who don't have disabilities. Telling people off has never changed behaviour no matter how well intentioned.
In you viewpoint it seems you think it is better to do nothing. You sound angry. You have probably only written this to maintain your own visibility in the disability sector.
Doesn't look good!
Oh and yes I do have a disability!
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Brendon Murray, in reply to
the problem is what you experienced on you day in the chair was the solution to the disability not the disability itself if you have tetraplegia or muscular/skeletal impairment the pain the lack of respect people speaking above you, the hours of preparation getting ready to get to the chair before you can start your day it forgets the frustration of day in day out being a prisoner to the environment to the fact that no matter how independent you are you still need support to sometimes even do pass your bodily functions, the chair is just a an appliance that aids your mobility.
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Robyn Carter, in reply to
Absolutely Brendon - My one day in the chair makes me no expert at all, but it did raise my awareness of some of the common everyday frustrations that someone may experience. That still is a good thing in my book. By the end of the day I was quite angry at the lack of respect I was given in my situation, and I don't know how those in a wheelchair can maintain good humour knowing theirs is permanent.
Simulations isn't going to make anyone an expert, but it *does* raise awareness. And that in itself is good.
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Maybe these simulation exercises help people who have no imagination or limited empathy, but I personally prefer hearing about the experiences of people who deal with this kind of thing on a daily basis.
The big ear muffs, for example, strike me as both patronising (due to their obviousness) and inaccurate as to how Deaf people experience interactions with the hearing. For example, often deafness is "invisible" (at least at first), so a Deaf person has to start off an interaction by indicating that they can't hear.
(Disclaimer: I'm not Deaf/hard of hearing myself, but this is what I've been told by people who are.)
It takes about 30 seconds of rational thought to figure out that wheelchair accessibility is good for a business (hint: it's not just wheelchair users whose mobility can be facilitated by ramps and easy-opening doors or lifts) , but many STILL grumble about their legal obligations.
If they can't take that 30 seconds to think, then maybe getting them to use a wheelchair to carry out their normal business for a few hours might get them to open their thick skulls? But how much of that kind of stunt would be about being seen to do the right thing (rather than employ some basic thought, consideration, and yes, respect).
I feel the same way about the sleeping outdoors one day a year for that charity. Yup, it's nice that people are having their "awareness raised" and then get to sleep in their comfortable beds the next night. If you haven't had that actual experience yourself before (I have, fortunately briefly), what exactly do you think as you walk past street sleepers? Is it really your awareness that needs raising?
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Sacha, in reply to
many STILL grumble about their legal obligations
Worse, they lobby for those obligations to be removed to save them a few dollars. And this government is so obliging.
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Sacha, in reply to
Disagreement is welcome. However,
it seems you think it is better to do nothing.
The post explicitly says other activities need to take centre stage.
You have probably only written this to maintain your own visibility in the disability sector.
I doubt Victoria needs to prove herself to anyone after what she has already achieved for Deaf New Zealanders and the rest of us.
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Sacha, in reply to
Maybe these simulation exercises help people who have no imagination or limited empathy, but I personally prefer hearing about the experiences of people who deal with this kind of thing on a daily basis.
We need to do a far better job of telling the variety of stories that help others understand what disability can be like - and linking them to make sense.
This government to their credit finally allocated some annual funding for that. Unfortunately rather than being used to produce a coherent campaign, it has largely been scattered into smaller projects with little impact beyond particular locations or communities.
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Jeremy Andrew, in reply to
It takes about 30 seconds of rational thought to figure out that wheelchair accessibility is good for a business (hint: it’s not just wheelchair users whose mobility can be facilitated by ramps and easy-opening doors or lifts) , but many STILL grumble about their legal obligations.
Speaking as someone who works in a role that involves pushing a trolley around my workplace on occasion, I have a fair idea of wheelchair accessibility around the site. I have formed some conclusions on why there's no one working here in a wheelchair - they probably couldn't get to the interview...
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Moz, in reply to
(sorry for a slightly off-topic reply)
I've sometimes wondered if he has perfect pitch.
Now *there's* a disability that's interesting to explain to people. It helps some people to think of it as a tape deck in my head. Whatever I can remember, I can remember accurately. And I suspect that this is more common with autistic spectrum people.
For me, it manifests as difficulty distinguishing difference in pitch from difference in tone. And boy can I ever do that. Somewhat memorably, a CD player that was <1% slow sounded flat to me... and you wouldn't wish that on anyone, honestly. People didn't believe me until I showed them an A-B comparison (of $10k CD players, BTW).
It makes singing with other people difficult. "in tune" is a matter of opinion, and it takes a lot of work for me to keep track of just what sort of awful is the desirable one. "you're not singing the same as the recording in my head" is obviously always going to be true, but sometimes the person is "in tune"... and 99% of the time they're not. When 1% out is definitely out... can you sing in tune?
The big reveal for me was at university when I hung out with a couple of fairly musically talented people (Jo Cherry and Fiona Pears) who could actually hold a note and explain why a "perfect fifth" on a piano was always going to sound like cats in a sack. Piano, in general, is torture. Non-fretted instruments played by talented people, that's the go.
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Christopher Dempsey, in reply to
I don't know how those in a wheelchair can maintain good humour knowing theirs is permanent.
I don't know either but whatever, we (those of us who are differently abled) *have* to maintain it, otherwise it just does our head in. Having a set of different abilities is one thing, having the mental health to go along with that is another thing altogether.
My brother is in a wheelchair, and has pretty awesome mental health. I wear HA's and my mental health isn't as crash hot! Still, wearing HA's is both a blessing and a curse, but something I've learnt to live tolerably with.
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Most ABs have grown up in a world where human bodies perform various functions without particular thought or effort. The qualities of applied intelligence, imagination and empathy are not highly developed in our population. Therefore I don't find it surprising that most ABs have very little idea of the impact of various disabilities. I also don't find it surprising that many disabled people have very little idea of the impact of other, very different disabilities to their own. I think we could all learn a lot if we genuinely attempted to simulate a particular disability experience for a reasonable time, or thought through what must be required to manage a particular disability and live a good life. I applaud people who try to understand, however they attempt to achieve that understanding. If people don't understand or try to, they can have little appreciation of the daily efforts required. These efforts demand respect, aside from the common courtesy we should all show each other, but too often don't.
It is gobsmacking that people using wheelchairs are routinely asked about their sex lives, but it is true. It is gobsmacking that a gaggle of teenage girls blocking the footpath will not move aside until asked and then loudly make nasty remarks when a disabled person in a wheelchair has navigated past them. Incidents like these disproportionately affect people with disabilities but are also symptomatic of a more general lack of respect between people.
I'm showing my age, but I was taught sayings like "Do as you would be done by" , "Don't judge a man until you've walked a mile in his shoes" , "If you can't say something positive, don't say anything" and "You reap what you sow" - all part of a cultural expectation of respect for others which seems to be less in evidence these days.
However, respect isn't enough alone, some level of appreciation of what might be difficult or impossible is also needed. This is obvious when you phone ahead to check accessibility and are assured that a place is accessible- but when you arrive there's a step to get in. Oh, it's only a small step, I didn't think it would be a problem! Aaaargh! -
Chris Waugh, in reply to
“Do as you would be done by”
A surprisingly common principle, in that it has been taught by philosophers, prophets, priests, and many others throughout the world since time immemorial. And yet.... as a species, we're astonishingly good at not learning basic lessons.
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Christine Peet, in reply to
I concur with you totally Christopher - although I'm in a wheelchair, I don't think I'd want to swap my wheelchair for walking. I've lived my life this way and I'm happy.
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Angela Hart, in reply to
Christine, you wouldn't be the person you are if you were walking, I know many people who would not change their lot, except perhaps in relatively minor ways, but who deserve more respect than they get.
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Moz, in reply to
I was taught sayings like "Do as you would be done by" , "Don't judge a man until you've walked a mile in his shoes" , "If you can't say something positive, don't say anything" and "You reap what you sow"
Most of those only work at a meta level, though, and many people completely miss the point even while literally obeying them. That's where you get the "wear earmufffs/use a wheelchair" version of "walk a mile", for example. And "do as you would be done by" is a classic trap for the egocentric and socially unaware. They end up giving a soccer ball to a blind person because "soccer is great fun".
They work fine as a thinking exercise, "how do I think this person would feel" and "what would it be like if" can be very useful. But even more useful IME is to directly state the primary lesson from all of those: ask people about their desires and only do things you have consent for.
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Rosemary McDonald, in reply to
the problem is what you experienced on you day in the chair was the solution to the disability not the disability itself if you have tetraplegia or muscular/skeletal impairment the pain the lack of respect people speaking above you, the hours of preparation getting ready to get to the chair before you can start your day it forgets the frustration of day in day out being a prisoner to the environment to the fact that no matter how independent you are you still need support to sometimes even do pass your bodily functions, the chair is just a an appliance that aids your mobility.
And somewhere in there Brendon is the discussion that got me thrown off the DPA NZ facebook page.
I had the audacity to say what Cheryl Marie Wade said in her brilliant piece in Ragged Edge, "It Ain't Exactly Sexy", featured here http://regator.com/p/245866886/bowel_bonanza_a_week_long_exploration_of_bowels/
It appeard that some in the DPA NZ community were very uncomfortable with the "yucky" aspects of managing a high spinal cord injury. Strange indeed since the discussion was centrered around an Attitude programme about an ACC funded tetraplegic and how inspirationally wonderful her life was becomming as she adjusted to life in a wheelchair.
I was trying to bring to the fore the significant disparity in supports between ACC and MOH for those with spinal cord impairments.
ACC acknowledges that managing bowel and bladder dysfunction requires time and expertise, and also acknowledges that mishandling of bowel and bladder issues can lead to serious medical problems....even death.
Not to mention completely shitting up your day.
The MOH does not.
I have tried, and given up, trying to get our two NZ on Air funded disability programmes (Attitude and One In Five) to do a comparison and/or a "walk a mile in my shoes" programme on tetraplegia under ACC compared with tetraplegia under MOH.
Forget it.
Why?
Seems that ACC funded tetraplegics would not be willing to front up and declare what exactly they were getting in the way of supports.
SO....if we cannot acheive any sort of fellow feeling, " do as you would be done by"/ "sauce for the goose, sauce for the gander" narrative within the disabled community...how the hell can we expect the non disabled community to ever hope to get a true picture of our lives?
And by " our" I mean disabled people AND the families who share their everyday lives.
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