Living the Edges: A Disabled Women’s Reader, edited by Diane Driedger, was launched last week in Canada, and it should contain plenty of interest for readers of FWD/Forward.

The McNally Robinson book-launch blurb is as follows:

Diane Driedger has written extensively about the issues of women and people with disabilities over the past 30 years. Diane is an educator, administrator, activist, and researcher in the area of disabled women’s issues in Canada and internationally. She is also a visual artist and poet, and holds a Ph.D. in Education. She lives in Winnipeg.

This collection brings together the diverse voices of women with various disabilities, both physical and mental. The women speak frankly about the societal barriers they encounter in their everyday lives due to social attitudes and physical and systemic inaccessibility. They bring to light the discrimination they experience through sexism, because they are women, and through ableism, because they have disabilities. For them, the personal is definitely political.

While society traditionally views having a disability as “weakness” and that women are the “weaker” sex, this collection points to the strength, persistence, and resilience of disabled women living the edges.

A partial contents list, from Disability Research Forum reveals a whole lot of must-read articles:

“Feminism, Disability and Transcendence of the Body” by Susan Wendell

“Living on the Edges” by Charlotte Caron and Gail Christy

“Mirror Woman: Cracked Up Crazy Bitch Conja Identity” by Marie Annharte Baker;

“Margins Are Not For Cowards” by Cheryl Gibson;

“Triple Jeopardy: Native Women with Disabilities” by Doreen Demas

“Coming Out of Two Closets” by Jane Field;

“Performing My Leaky Body” by Julie Devaney

“To Be Or Not to Be? Whose Question Is It, Anyway? Two Women With Disabilities Discuss the Right To Assisted Suicide” by Tanis Doe and Barbara Ladouceu

“Living Poorly: Disabled Women on Income Support” by Sally Kimpson

“‘Have You Experienced Violence or Abuse?’: Talking With Girls and Young Women with Disabilities” by Michelle Owen

“The Geography of Oppression” by Joy Asham

There was an audio interview with Diane Driedger at CBC’s Weekend Morning Show last Sunday, in which Diane speaks of the book and of her experiences with invisible disabilities and workplace accommodations.

My transcript of the Weekend Morning Show interview, titled “Double Jeopardy”, is below the cut. All errors in transcription are mine.

Kerän [host]: Every once in a while, a brand new book appears on my desk, and I’m always keen to break open the envelope and see what a Manitoba author has produced this time. A few days ago, one arrived from Winnipeger Diane Driedger. It’s a compilation of stories from Canadian women. But these women, including Diane, share something in common. They each have a physical or an intellectual disability. The book is called “Living the Edges: A Disabled Women’s Reader”, and in it women write about what it’s like to be different in a world that seems to prefer nothing but normal. Diane Driedger’s on the line now: hi there!

Diane Driedger: Good morning!

Kerän: Well, for those of us who haven’t had a chance to read the entire book, what would you say it’s about? What would you say is in it?

Diane: Well, there are essays, and poems, and art from over forty women from East to West to North here in Canada, and it’s about the barriers that women with disabilities come up against in their daily lives. And most of these are imposed by society. Things like attitudes, that people don’t understand that perhaps you have limitations, especially if you’re a person who has invisible disabilities like myself: people often look at you and say “But you look so good! What do you mean, you need accommodations?” You know?

Kerän: What are your invi- do you mind talking about your invisible – ah

Diane: That’s fine! Yes, I have fibromyalgia, and I’ve had that for eighteen years. And I also have asthma, and I’m a breast cancer survivor, almost five years now. And what a lot of people don’t know is that breast cancer treatment in itself is also disabling to people in different ways. Chemotherapy and radiation is a big assault on the body. But all of these things mean that I have fatigue and chronic pain problems, and of course winter is really the worst time. And so living in Winnipeg you can imagine the barriers that are imposed within the environment here.

Kerän: And if was interesting that I called and said “Are you able to come down?”, and you said “Is it really necessary?” and I said “No, no it’s not necessary to come down, you stay at home” because I think it is hard for you, it is hard for you to get around in the wintertime.

Diane: Oh yes, I was just sitting here waiting for your call thinking “What if I had gone to the studio this morning? I think it’s minus 29 outside

Kerän: Mm hmm

Diane: Yeah. The body is feeling pretty creaky this morning.

Kerän: So’s mine.

[laughter]

Kerän: What do you think have been the most difficult barriers that you’ve experienced?

Diane: I would say, ah, there are a lot of barriers around employment issues. For people with disabilities in general, and for many of us women with disabilities who have invisible conditions it’s very difficult to talk with employers about accommodations and to receive them. Often people are wondering if you’re making up the story because you don’t wanna do work in a certain way. And for me, a barrier is, you know, I cannot sit at a desk nine to five any longer. Just because sitting is my worst position. My best positions are lying down and standing up. And because I do an administrative job, that becomes an issue. But my current employer has made accommodations for me where I work at home in the morning, and a lot of that work takes place with me lying down on the couch, talking on the phone, I write lying down, I read lying down, and in the afternoons I go to the office and talk with my staff and have meetings.

Kerän: And you’re the provincial coordinator for the Manitoba League for Persons with Disabilities, so they understand?

Diane: Yes.

Kerän: Listen, you’ve had some interesting experiences when you applied for jobs. And I found, when you were telling me about them, I found they were quite astounding. What happened to you?

Diane: Well, I think the one that really was quite astounding to me was about eight years ago I applied to a quite prestigious non-profit agency here in Winnipeg for a position. And I was successful, the director called and offered me the job, and then I asked for the accommodation of, I said, “Well you know I don’t think I can come into the office every day, I would like to work at home some parts of the time.” And then there was silence, and she said “Well, no, part of the job is you have to be in the office, because you have to be part of the team. And you can’t be part of the team if you’re not here in person.” So then she said, “Oh no, now we have to start all over again and look for somebody else.”

Kerän: So it was YOUR fault, that you caused the problem for her?

Diane: That’s right. Yes.

Kerän: And you focus on women in this book I think because – is it true that women, more women than men suffer from invisible disabilities?

Diane: Definitely true. There are a lot of these, what they call these “new disabilities”, right? Chronic fatigue syndrome, fibromyalgia, and then long-standing disabilities like lupus, depression (women tend to have higher rates of depression than men), those are just a few examples of conditions that are invisible but can be very disabling.

Kerän: Diane, over the years we have seen some changes, physical ones anyway, you know, we’ve made buildings and sidewalks more accessible. What – What do you want to see happen right now to change the attitudes toward invisible disabilities?

Diane: Well, I would like employers to understand that work can take place in any format, and work goals can be achieved often in different ways that we’re not used to, but we need to adopt a flexible attitude toward work: where it takes place, how it takes place. Particularly in this computer age, there should be no reason why we can’t have many more home-based employees who may not be able to get out as much. That’s my message: let’s think outside the box when it comes to work and how we work.

Kerän: Good thoughts to think about. Thank you so much!

Diane: Thank you!

Kerän: Alright take care.

Diane: Bye bye

Kerän: Bye bye.

Kerän: Diane Driedger’s one of the editors of “Living the Edges”. which is a disabled women’s reader. She’s also the provincial co-ordinator for the Manitoba League for Persons with Disabilities. And I’d like to hear from you on the subject. Are you someone with an invisible disability, or as Diane puts it someone with Double Jeopardy of being woman and disabled? What are your thoughts on this? Why are we not makign progress? Why are we still blind to the fact that the world doesn’t have to be full of “normal” people? That there is lots of room, and that room should be made for everybody no matter what the differences are? You can call our listener line 788 3102 or email us weekend@cbc.ca .

The book is $30 direct from the publisher (I think they’re Canadian dollars), $30 USD from Amazon, or $57 AUD from Emporium Books Australia. And if you’d like your local academic or public library to stock it, how about putting in a request to the librarian?

©2012 FWD/Forward. All Rights Reserved.

And this is why.

Power chairs: older and fatter Americans are on the move – St. Petersburg Times:

“A man on a moped crashed into a man in an electric wheelchair the other night in the middle of Fourth Street. There on the front page of the paper was a police tape picture of one of those objects we see all over. The wheeled mobility industry calls it a power chair.

A what? A “power chair”? Wow, I’ve never heard of one of those before! Whatever could this “power chair” item be? What is it for? Should I be frightened? It’s something to do with teh fat, right? Cos there’s “fatter” up there in the headline.

They’re everywhere, it seems, dotting the downtown streetscape, a kind of ant trail from the condos to the Publix and back.

The temptation is to declare these are the new symbols of this city. Used to be folks sitting on green benches, God’s waiting room and whatnot, and now it’s folks sitting on … these.

Truth is, though, power chairs and mobility scooters are far from just a Florida phenomenon, and mishaps are not unusual.

WHAT? These … contraptions … are in places OTHER THAN FLORIDA too? SOMEbody really did just discover powered mobility devices for the first time. And they’re not happy.

[...] Electric mobility devices, or EMDs, are everywhere because of trends in geriatrics and bariatrics. Those are the portions of the health care industry that deal with old people and fat people.

This is America, getting bigger and older, fatter and grayer, rolling into the future.

[Snip prolooooooonged agonising - they're not quite motorised vehicles, they're not quite bipeds, what do we CALL them? How do we TREAT them? The sky is falling!]

They don’t need to be registered, after all, and they don’t have state plates. And what about the people in them? They don’t need a license. Does that make them pedestrians? They’re clearly not using their feet.

[More agonised whining. Did you know that now and again, old people drink alcohol? Shocking, I know.]

State law also says sidewalks are for pedestrians. No motors.

Hmm.

Reeeeally? Are you sure about that State law? Did you, say, look up what “pedestrian” means? Here’s a clue, from a the 2010 Florida Code, TITLE XXIII MOTOR VEHICLES, Chapter 316 STATE UNIFORM TRAFFIC CONTROL , 316.1995 “Driving upon sidewalk or bicycle path”, which I found with a 60-second Google search:

(1) Except as provided in s. 316.008 or s. 316.212(8), a person may not drive any vehicle other than by human power upon a bicycle path, sidewalk, or sidewalk area, except upon a permanent or duly authorized temporary driveway.

(2) A violation of this section is a noncriminal traffic infraction, punishable as a moving violation as provided in chapter 318.

(3) This section does not apply to motorized wheelchairs.

Section 3 is fairly recently clarified, but it’s clear from other law sites that motorized wheelchairs were considered pedestrians by custom before the clarification.

Now that that’s settled, back to the “older and fatter” article:

This is to say nothing of the fact that the manufacturers of EMDs say (even if they don’t really mean) that their products aren’t meant for outdoor use. Medicare, which last year paid out $547 million for power chairs, won’t pay for an EMD unless it’s specifically meant for indoor use.

Did somebody not quite bother to, oh, I don’t know, talk to an actual person with a disability? Somehow who, say, I don’t know, maybe…. uses a scooter or powerchair?

No, let’s just assume that the ridiculous requirements of subsidy schemes, which assume that PWD are confined to quarters at all times, must reflect reality. Crips, right, they oughtta stay indoors, y’see? Because others enabled folk will NOT KNOW HOW TO DEAL with their freaky wheelymobiles. AWOOOGA.

Newsflash, folks: We crips go outside. We go to the shops, to the library, to the doctor, to friends’ houses, to bars, to restaurants, to arts events, to work, to university, to our kids’ schools and friends’ houses and sporting matches. And some of us go on wheels. And – shock, horror – there are wheeled mobility devices made for our outdoor needs. There are even wheeled mobility devices made for rugged terrain and hiking trails.

Yes, there are also products designed mostly for indoor use (personally I wouldn’t want to deal with a three-wheeled scooter outdoors, not with our sidewalks, but YMMV.) Those are generally marked “For indoor use”. To differentiate them from, oh, I don’t know, the products that are designed for outdoor and indoor use.

Do you not believe me? Do you need some examples? Here are some just from my local vendor [they don't pay me, I'm just a happy customer]:

The SHOPRIDER™ 889E represents prestige and class combined with unparalled stability and style, all at an economical price. The four 330 mm tyres provide added safety and comfort when utilised for any outdoor activity.

Traditional rear-wheel drive and compact design enable the FPC to easily manoeuvre and negotiate many obstacles both inside and outside the home.

The SHOPRIDER™ 778ER not only manoeuvres well indoors, it is also ideal for the open spaces provided outdoors.

The SHOPRIDER™ 778DXD allows you to travel in comfort and style to all the favourite outdoor activities you enjoy.

This St. Petersburg Times article, if the published product bears any resemblance whatever to what the journalist wrote, is just ignorant, unresearched twaddle. Not even poorly researched. Unresearched.

Moving on, the article hits the usual fat epipanic buttons:

[...] Meanwhile, two in every three Americans are overweight, one in every three is obese, and childhood obesity has tripled in the last 30 years.

‘We’re going to see more and more people riding around in scooters and wheelchairs,’ said Mike Moran, the executive editor of a leading home medical equipment trade publication, ‘because we’re going to see more and more old people who can’t walk and more and more heavy people who can’t walk.’

And there are no other categories of mobility device user. They are:

1. OLD;

or

2. FAT.

Do you know what words this article doesn’t use, not even once?

“Disabled”.

“Disability”.

“Disabilities”.

Their only mention of disability is to briefly mention that in the UK some people call motorised mobility devices “invalid carriages”.

And here’s the kick in the tail:

And last month, at a medical equipment trade show in Atlanta, Moran saw a product on its way to market that made him gasp.

‘Oh. My. God,’ he said. A power chair for a 600-pound person.”

I can’t help wondering if this quote is massaged or invented. Because Mike Moran‘s publication, HME News, carried an article back in 2003 with the following quote:

Bariatric bed frames and support surfaces are now being reinforced to handle up to 1,000-pound patients. “We have a lot of patients in the 600-pound range and 400-pound patients are very common,” one vendor said.

And in 2004, an article at his publication referred to a code for a powerchair with a capacity of up to 600 pounds:

EXX16-Bariatric, Captain’s Chair (patient weight capacity equal to or greater than 450 pounds up to and including 600 pounds) frame motorized/power wheelchair.

And alllllll the way back in 2002, they referred to an actual product, a powerchair with a weight capacity of up to 1000 pounds.

Mobility equipment is nothing new, fat people are nothing new, mobility equipment for fat people is nothing new (on account of if there are fat people, there will be fat people with disabilities), and I’m finding it incredibly hard to believe that this item is any sort of novel concept for someone running a medical equipment trade publication. I would find it much easier to believe that he is disgusted, because people are arseholes, but surprised? Nope.

Wonder if he knows they’re depicting him as a gormless twonk who doesn’t know his own business?

And d’ye know what the fart icing on the shit cake of this article is?

The caption on their image reads:

A man in a motorized wheelchair legally crosses Second Avenue S, just west of Fourth Street S in St. Petersburg.

Oh noes! A wheelchair user is legally crossing the street! Outdoors, in the room with the big blue ceiling! On a PEDESTRIAN CROSSING! Sie’s not even using hir FEET! How could this possibly be LEGAL?

[Cue internet cake-farting fetishists. They'd be more interesting than this contemptuous clueless claptrap.]

©2012 FWD/Forward. All Rights Reserved.

So I’m sitting watching the evening news, and on comes a chap telling us women and girls that we oughtta go and get more Pap smears. Then on comes a woman to talk about how Pap screening rates are going down in young women, and to speculate about possible causes for this. The cervical cancer vaccine comes up, as does the “awkwardness” of the test, and our inappropriate embarrassment, which we apparently need to get over.

What I don’t hear addressed in the mainstream media in these discussions of Pap screening? Well, lots of things, like heterosexism, and ignorance about Pap age/sexual experience guidelines, and sexual assault (inside and outside the medical system). However, the one that really stood out in my mind today is also a factor that isn’t going to be fixed by lecturing women. Fatphobic abuse in the medical system.

There has been a fair bit of talk around the feminist traps about some of the other factors, especially the aftermath of sexual assault and its effects on medical interactions. I’m not going to go into that in this post, but it’s a huge, huge issue. What I would like to talk about for a moment, not because it’s more important but just because I have a first-person anecdote, is medical fatphobia.

We know fatphobia kills. In all sorts of ways, in all sorts of settings. And one way in which it can kill is the horrendous tendency of doctors – quite a few doctors, from the stories I hear around the place – to trap women and girls on their backs so that they can shame them while they’re vulnerable. And what they don’t realise, or don’t care about, is just how long-lasting the effects of this can be – and not in a good way.

Medical education materials abound with motherhood statements about ‘Preventive Medicine’ and ‘Lifestyle Intervention’ and ‘Opportunistic Behavioural Education’. General practitioners are exhorted, over and over again, to take any and all opportunities they can to tell people they’re fat. Really, over and over. And OVER. And doctors, labouring under the mistaken impression that this will cause said people to magically become skinny and therefore ‘healthy’, go ahead and do it, then smugly boast about it between themselves, sighing about how no-one ever listens to them. Or, perhaps, under the impression that they can then self-satisfiedly sit back and tick a box on the chart about how they’ve engaged in initial Lifestyle Education, which they learned all about at the last Lap-Band seminar.

Medical education is a powerful, powerful matrix of fat hate, based on the twin premises that telling people they’re fat is (a) helpful and (b) harmless.

So let’s talk about how that plays out in practice:

When I was 19, I had a Pap smear. It was my first. I went to the nearest available doctor, who worked in a setting where they dealt with a late of people in late adolescence and early adulthood. I wasn’t particularly concerned about it; a very little vague unease at the unknown, but no particular trepidation. I didn’t bother taking anyone with me, and I just booked the appointment in between other things I had to do, like med school classes and whatnot. And off I went.

And then I fled.

Was I ‘traumatised’? I didn’t have nightmares. I went and got my next Pap smear dutifully, largely because I really didn’t have any choice – no Pap smear, no Pill script. (Ask me about contraceptive hostage-taking! You know you want to!)

But every time I get a Pap smear, every single time, even now more than twenty years later, I see his face. I see him jiggling my thigh with that look of disgust. Every time I lie down and spread my legs for the speculum, I am reminded of exactly how repugnant my body is.

My first impulse is to tell you exactly how fat I wasn’t, back then. To tell you that it wasn’t ok for him to do that because I was physically fit at the time. To tell you at length about how my aerobic capacity was at the 95th centile, that I could do a hundred pushups, that I could swim a k without stopping, that I was beating my fit male friends at squash, that I was getting State medals in my chosen sport. But that’s all irrelevant – because fat-shaming isn’t ok for people who are actually fat any more than it’s ok for people who aren’t. Fat-shaming doesn’t get a pass when it’s limited to people as fat as I am now, or twice as fat as me, or whatever. Fat-shaming isn’t bad because it’s directed at inbetweenies as well as at fat people. Fat-shaming is harmful for EVERYONE. Fat-shaming is not.ok.

As long as some doctors keep seeing lithotomy position as a prime opportunity to ladle on the shame, girls and women are going to avoid Pap smears. So hey, ball’s in your court, medical profession. Fix it. Get your own house in order, and meanwhile, stop telling US we’re the ones doing it wrong.

©2012 FWD/Forward. All Rights Reserved.

Protests ensued, and the show today held a followup with two parents of children with disabilities, a Teachers’ Federation representative, and South Australian parliamentarian Kelly Vincent.

The video of the first segment is up at Weekend Sunrise . The segment is a panel in which two panel members – journalists, shock-jocks, and so on – are asked for soundbite opinions on issues in the news. The segments are usually orchestrated so that the two commenters will have a disagreement. Here’s a transcript of the relevant section, which starts about two-thirds of the way into the video. [All emphases in transcripts are mine.]

Announcer: Anyway, moving on. A teacher is suing the government claiming that she’s damaged her larynx by having to scream at kids. [laughs] Some of the – well, as a parent I kind of understand! – Some of the kids in her classmates are special needs, and she claims she wasn’t given proper assistance. The 39-year-old is now seeking four hundred thousand dollars. Was she training as an opera singer? Anyway! Does this sound reasonable to – hang on, I’ll start with Paul Murray. [incomprehensible]

Paul Murray: [explains that teaching is a 'tough gig' and she could have got more help, but that four hundred thousand is a 'stupid number']

Prue MacSween: But it’s a number of issues. The woman is put into this room with all these special needs kids. So many of them! She should have – for a start, it’s a reflection of the bad system. These special needs kids should not be in a class with, you know, kids that don’t have special needs for a start. So we need to throw more money at the education system, make sure that these kids are properly administered to, because they almost need one-on-one help!

Paul Murray: Yeah, but I disagree with that. [Announcer in background: Yeah, I disagree with that too.] I think that they should –

Prue MacSween [interrupting] I know, I know what you intelligentsia are saying –

Paul Murray: No, that’s rubbish.

Prue MacSween: No, it is, it’s thought police stuff!

Announcer: It depends on the nature of the special needs.

Paul Murray: They need two teachers in the room, to be able to make sure that there’s one who can cover the gap. But you can’t just -

Prue MacSween: No, I’m sorry, I can’t agree with that.

Paul Murray: It’s about socialising. It’s not about –

Prue MacSween: I understand that, but what about the kids who are quite normal and adequately able to understand? They’re being held back. It’s like girls going into schoolrooms with bloody boys! Boys are so retarded, they keep them back!

[Announcer laughs heartily in the background; Paul Murray smiles and shakes his head dismissively]

Prue MacSween: I honestly think that we need to make sure that we have these special needs kids put somewhere where they are properly trained. And then slowly, once they are in a capacity of being able to -

Announcer: We’re running out of time. [sarkily] That’s next week’s topic, “Are Boys Retarded?” And I look forward to hearing your views on that, Prue.

When people kicked up about this bigotry, including a Facebook group “Prue MacSween and Channel 7 Should Apologise“, MacSween ‘splained to us all that she’s not prejudiced because she once employed a “Down Syndrome boy” in her office – so she knows that integration should only occur in “controlled situations”.

For one example of protest in the blogosphere, read Nothingbuteverything’s Open Letter to Prue MacSween. Excerpted:

What exactly do you have in mind when you suggest that children with special needs need to be ‘properly administered to’ and ‘put somewhere’? Where do you think they should be ‘put’? What happens in this place? How exactly do they get ‘trained’ (and why not ‘taught’) ?

Also, I know you didn’t get the chance to finish your last sentence, so please enlighten me: just WHAT do ‘these kids’ need to be ‘properly trained in’? Being ‘normal’?

Followup

Today Weekend Sunrise ran a followup segment [click forward to the "Special education" video], including Kelly Vincent, parliamentarian in South Australia. Transcript:

Announcer: Two weeks ago, we looked at the story of the teacher suing the government claiming she’s damaged her larynx from yelling at the children in her class. Now some of the kids had special needs, and comments made by our All-Starts panellist Prue MacSween caused controversy.

[replay of offensive comments]

Announcer: No surprises: the comments have sparked a massive online debate. A Facebook group protesting against Prue’s point of view has more than 2600 members. The founder of the Facebook site, Livian Jones, joins us now, along with Larissa Iani [sp?], a mum who feels passionately about the subject. We also have New South Wales Teachers’ Federation Vice-President Gary Zadkovich, and newly elected MP Kelly Vincent joins us from Adelaide this morning. Good morning to you all; thanks for your time. Ah – Livian, your six year old son Caleb has autism. Now he’s in a mainstream class in a public school. Why have you pushed so hard here?

Livian Jones: Well for me, it’s about choice, and the freedom to be able to look at all the options available and see which option best suited Caleb’s needs. And I figured if I found a great public school and they had the resources to support him, well then I figured why couldn’t he have the same opportunities as other kids to attend his local school? And now he’s a great example of how inclusive education can work with the right supports, and how as parents we need to protect that option for our kids.

Announcer: OK. Now, Larissa, your son, six-year-old Anthony has been diagnosed with a global development delay. He’s educated in a mainstream school, but he’s in a support class.

Larissa: That’s right.

Announcer: Why do you object to the comments?

Larissa: Well first and foremost, we’re talking about children here. No child should ever be spoken about so disrespectfully, and no child should ever be labelled a “retard”. As the mother of a child with an intellectual disability, I find those labels and insults quite sick and wrong. And it’s these kind of comments that incite people to discriminate about our children. And look, we’re here now as a result of this, debating whether or not children with special needs are disadvantaging others! When all they have is a basic human right to access the education style that fits them best. It’s their right, it’s their choice, and they should be respected for that.

Announcer: Gary, I was just going to ask you if we take the emotion out of it – I don’t think we can – but from a business perspective, from an advantage/disadvantage perspective, should kids with special needs be educated in separate classrooms?

Gary: Teachers support a full range of options being available for students. We support special classes in regular schools, special schools – standalone special schools, but also we support the integration of students into mainstream classes where that’s appropriate. The problem is not so much the placement of students into mainstream or special classes; the problem is that governments have not properly funded the support and the resources to best meet those students’ needs. And that’s why we consistently and continually campaign to improve government funding to meet the students’ needs.

Announcer: Now, Kelly. You were recently elected to the government of South Australia. You have cerebral palsy. What’s your opinion on this debate?

Kelly Vincent: Well, it’s disgusting. It’s terrible, the comments that have been made. Sure, funding has a lot to do with it, but attitudes don’t help, especially negative attitudes obviously. The comments were just way out of line, particularly toward children as someone said earlier. Because they are defenceless, and they can’t stick up for themselves, so to go around publically saying those things is just terrible. When we talk about children of different abilities being in the same classroom – once upon a time, we said that about people of different colours, that they shouldn’t be in the same classroom as each other, black and white people. And look where that got our society. So it’s just totally unacceptable. Completely agree that funding and the support for the teachers has a lot to do with it. But it begins with parent and student choice, and having the resources in place once the family makes those choices as to what’s best for their child.

Announcer: Alright. Everybody, thankyou for coming in this morning; we appreciate your input. Thanks for your time.

There’s a lot to talk about here, but one thing I do like about the segment is that firstly they had a person with disabilities involved. Though more would have been better, this is a move in the right direction. Also, I like that not everyone is talking only about a parent’s right to choose; there is an emphasis in comments about respect for children with disabilities and about allowing children to have input into their education choices.

©2012 FWD/Forward. All Rights Reserved.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Got any questions for your fellow FWD commenters?

A note to commenters: Please, as with other threads, keep the length of your comments down. A usual guideline, in the absence of extenuating circumstances, is to stick to around three pithy paragraphs or so, and to avoid making back-to-back comments.

Today’s chatterday backcloth, a baby pangolin, comes via The Daily Squee.

©2012 FWD/Forward. All Rights Reserved.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Got any questions for your fellow FWD commenters?

A note to commenters: Please, as with other threads, keep the length of your comments down. A usual guideline, in the absence of extenuating circumstances, is to stick to around three pithy paragraphs or so, and to avoid making back-to-back comments.

Today’s chatterday is hosted by a stack of lemurs, from The Daily Squee.

©2012 FWD/Forward. All Rights Reserved.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Got any questions for your fellow FWD commenters?

Today’s Chatterday is hosted by a Death Star watermelon.

A note to commenters: Please, as with other threads, try to keep the length of your comments down. A usual guideline, in the absence of extenuating circumstances, is to stick to around three pithy paragraphs or so, and to avoid making back-to-back comments.

©2012 FWD/Forward. All Rights Reserved.

At the moment I’m reading Dexter by Design (2009), by Jeff Lindsay. It is the fourth book in the Dexter series, a thriller/crime series with a touch of spec fic, set in current-day Miami. Dexter Morgan and his foster sister Deb are both police officers working in homicide; Dexter a blood-spatter expert and Deb a sergeant. Dexter is also a serial killer, brought up by his police officer foster dad to follow “The Code”, to only kill murderers who have escaped justice, and to not get caught.

Last night I read the scene below, and it hit all my rage buttons. Coming on the heels of the Ayr incident where a police officer stolen a woman’s mobility scooter, and the episode in Colorado where a teacher duct taped a disabled 12-year-old’s only communicative hand to his wheelchair, it was all too much.

The scene is excerpted below the cut. Additional warning for lots of taboo language; NSFW.

Dexter by Design, Chapter Nine.

[Background: Dexter and Deb are investigating a series of murders that look like they're trying to make a business look bad. They have a suspect identified by paperwork only. All they know about Meza is his name, and the fact that he was fired by this business. Dexter is the point of view character. Emphases are mine.]

It started right after Debs knocked on his door. I could tell by the way she was jiggling one foot that she was excited and really thought she might be on to something. And then when the door made a kind of mechanical whirring sound and opened inward to reveal Meza, Deborah’s foot stopped jiggling and she said, “Shit.” Under her breath, of course, but hardly inaudibly.

Meza heard her and responded with, “Well, fuck you,” and just stared at her with a really impressive amount of hostility, considering he was in a motorized wheelchair and without the apparent use of any of his limbs, except possibly for a few fingers on each hand.

He used one of the fingers to twitch at a joystick on the bright metal tray attached to the front of his chair, and it lurched a few inches forward at us. “The fuck you want?” he said. “You don’t look smart enough to be Witnesses, so you selling something? Hey, I could use some new skis.”

Deborah glanced at me, but I had no actual advice or insight for her, so I simply smiled. For some reason, that made her angry; her eyebrows crashed together and her lips got very thin. She turned to Meza and, in a perfect Cold Cop tone of voice, she said, “Are you Hernando Meza?”

“What’s left of him,” Meza said. “Hey, you sound like a cop. Is this about me running laps naked at the Orange Bowl?”

“We’d like to ask you a couple of questions,” Debs said. “May we come in?”

“No.” he said.

Deborah already had one foot lifted, her weight leaning forward, anticipating that Meza, like everyone else in the world, would automatically let her come in. Now she lurched to a pause and then stepped back half a step. “Excuse me?” she said.

“Noooooo,” Meza said, drawing out the word as if he was talking to an idiot who didn’t understand the concept. “Noooo, you may not come in.” And he twitched a finger on the chair’s controls and the chair jerked toward us very aggressively.

Deborah jumped wildly to one side, then recovered her professional dignity and stepped back in front of Meza, although at a safe distance. “All right” she said. “We’ll do it here.”

“Oh, yeah” Meza said, “let’s do it here.” And flipping his finger on the joystick he made the chair pump a few inches forward and backward several times. “Yeah baby, yeah baby, yeah baby” he said.

Deborah had clearly lost control of the interview with her suspect, which the cop handbook frowns upon. She jumped off to the side again, completely flustered by Meza’s fake chair sex, and he followed her around in his chair. “Come on, mama, give it up!” he called in a voice somewhere between a chortle and a wheeze.

I’m sorry if it sounds like I am feeling something, but I sometimes get just a little twinge of sympathy for Deborah, who really does try very hard. And so, as Meza whirled his chair in a stuttering arch of mini-lurches at Debs, I stepped behind him, leaned down to the back of his chair, and pulled the power cable off the batteries. The whine of the engine stopped, the chair thumped to a halt, and the only remaining sound was a siren in the distance and the small clatter of Meza’s finger rattling against the joy stick. [...]

This is where I started screaming “Nooooooooooo!” I’m fine with the idea of a nasty bloke who happens to use a wheelchair. Whatever – it’s a fictional Miami homicide investigation in a nasty nasty Miami; people are nasty. People who use wheelchairs can be just as nasty as people who don’t, and I’m glad Lindsay didn’t try to make an exception.

But. But. Dexter UNPLUGGED MEZA’S WHEELCHAIR. In his own house. Without putting him under arrest. Just to question him. About a series of murders in which they’ve decided he is no longer a suspect.

This is no different from a police officer charging into your house and tying you up without arresting you, or locking you in a room without arresting you. It’s assault, it’s deprivation of liberty, and it is not ok, no way no how, not even if the officer is feeling or being threatened. If these cops felt they were being threatened enough to put them in genuine fear of attack, they needed to defend themselves with reasonable force, then arrest Meza and take him down to the station, and write the whole thing up with a paper trail. Not immobilise him, then let him go when they’re finished questioning him. No, no, no, no, no.

People with disabilities should only ever be restrained or interfered with in the same situations that people without disabilities would be restrained or interfered with, for the same reasons, and with the same effects. It’s not ok to unplug someone’s wheelchair unless, in the same situation, you would completely immobilise an abled person by tying up all of their limbs. It’s not ok to duct tape someone’s only communicative hand to a wheelchair except in a situation where you would put duct tape over someone else’s mouth and hands. It’s not ok to take someone’s mobility device away unless you would tie another person in that situation to a chair.

And since these things are pretty much never ok during routine police work or school teaching? It’s not ok to do them to people with disabilities. It’s brutality, it’s assault and battery, it’s dehumanisation, it’s dangerous, and it is NOT OK.

I am continuing to read the book, hoping that this will come back to bite them in the arse, but I’m really fearing that it won’t.

~~~~~

In case you’re wondering what happens in the rest of the scene, it’s excerpted below.

At its best, Miami is a city of two cultures and two languages, and those of us who immerse ourselves in both have learned that a different culture can teach us many new and wonderful things.

I have always embraced this concept, and it paid off now, as Meza proved to be wonderfully creative in both Spanish and English. He ran through an impressive list of standards, and then his artistic side took full flower and he called me things that had never before existed, except possibly in a parallel universe designed by Hieronymus Bosch. The performance took on an added air of supernatural improbability because Meza’s voice was so weak and husky, but he never allowed that to slow him. I was frankly awed, and Deborah seemed to be too, because we both simply stood and listened until Meza finally wore down and tapered off with, “Cocksucker.”

I stepped around in front and stood beside Debs. “Don’t say that” I said, and he just glared at me. “It’s so pedestrian, and you’re much better than that. What was that part, “turd-sucking bag of possum vomit?” Wonderful.” And I gave him his due with some light applause.

“Plug me in, perro de puta,” he said. “We see how funny you are then.”

“And have you run us over with that sporty SUV of yours?” I said. “No thanks.”

Deborah lurched up out of her stunned appreciation of the performance and back into her alpha role. She pushed me to one side and resumed her stone-faced staring at Meza. “Mr Meza, we need you to answer a couple of questions, and if you refuse to cooperate I will take you down to the station and ask them there.”

“Do it, cunt” he said. “My lawyer would love that.”

“We could just leave him like this” I suggested. “Until someone comes along and steals him to sell for scrap metal.”

“Plug me in, you sack of lizard pus.”

“He’s repeating himself” I said to Deborah. I think we’re wearing him down.” [...]

“Nobody killed anyone at the Board,” I said.

He glared at me. “No?” he said. His head swivelled back to Deborah, mucus flashing in the sunlight. “Then what the fuck you harassing me for, shit-pig?” Deborah hesitated, then tried one last time. “Mr Meza,” she said.

“Fuck you, get the fuck off my porch,” Meza said.

“It seems like a good idea, Debs,” I said.

Deborah shook her head with frustration, then blew out a short, explosive breath. “Fuck” she said. “Let’s go. Plug him in.” And she turned and walked off the porch, leaving me the dangerous and thankless job of plugging Meza’s power cord back into the battery.

©2012 FWD/Forward. All Rights Reserved.

Note, firstly, that there is no formal E.R. category nor any panic about injuries related to the use of legs, despite this being a rather large category of actual injuries.

Note, secondly, that journalists reporting on this study make no attempt to interrogate the root cause of the injuries, preferring to attributing the injuries to the use of the device itself, despite this:

[...] three out of four times, the injury was caused by tipping of the device or falling as the result of coming upon some sort of obstacle such as stairs, a curb, a ramp, rough ground, or icy, wet conditions.

Why are these injuries being attributed to use of the mobility aid, instead of to poor, inaccessible design? Why are kids falling trying to navigate stairs when there should be ramps and elevators available? Why are kids falling on curbs when there should be curb cuts? Were these injuries on rough ground and ice preventable by salting, pathways, cover? 70% of the injuries occurred while children were using wheelchairs. How many were occasioned while these children were trying to negotiate inaccessible environments?

We have no idea. Because no-one, apparently, has bothered to ask. Nor has any mention of inaccessibility been considered worth reporting or putting in the press release.

Instead, we get headlines like “Crutches, wheelchairs can cause injuries” and “Injuries can be caused by crutches, wheelchairs“.

The authors of the Pediatrics study themselves chose to title their journal article “Pediatric Mobility Aid–Related Injuries Treated in US Emergency Departments From 1991 to 2008“[1], and there is no mention of universal design or accessibility in their abstract.

In contrast, there are plenty of comments throughout the study of the issue of the supposed “misuse” of mobility aids, despite this accounting for only seven percent of injuries.

There is a mention of accessibility in the full-text article, buried deep in the discussion, but this never made it to anything that will be read by the general population, or indeed most of the medical profession. Furthermore, the mention of accessibility only talks about in-home modification – completely failing to address the number of injuries that occurred on curbs, rough ground, and icy conditions.

This is what the authors had to say about accessibility:

Curbs, stairs, rough terrain, and steep inclines and declines were common trigger factors for falls and other injuries, leading us to speculate that lack of accessibility, particularly in the home, may be 1 factor contributing to mobility aid–related injury. For children who were using mobility aids on a temporary basis, particularly crutches, home modification and avoiding stairs may not have been considered.

“Avoiding stairs”.

Mobility-impaired children should consider “avoiding stairs”! This is not just ignoring accessibility; it’s a giant slap in the face. Do the authors seriously think that it hasn’t occurred to anyone with a mobility impairment to try to avoid stairs? Really? We’d love to. That would be fabulous, thanks. However, we have lives. Lives in inaccessible environments, where we sometimes are left with the choice to take stairs or not go. To school and university, to work, to doctor’s appointments, to public transport, to artistic and political events, to social gatherings. Mobility-impaired people don’t take stairs and curbs out of choice; we do it because there’s no accessible alternative provided. And what happens to PWD who can’t take stairs no matter what? Confinement. Yes, PWD aren’t “confined” by wheelchairs; PWD are confined by discrimination, thoughtlessness, and inaccessibility.

Instead of using their platform to publicise an unequivocal call for safer public design, the authors choose to focus in their abstract and press release about how they think “additional research” is needed. The need for further research is, indeed, their ONLY conclusion! But if this research focuses on device malfunctions and children’s competence, “misuse” of mobility aids and custom in-home modifications, it is destined to fail.

If there is to be additional research, a broad, societal view must not be so studiously ignored. However, do we really need more and more and more research to tell us that kids with mobility aids have trouble negotiating stairs, have trouble getting up curbs, have trouble on icy ground? More research to tell us, five or ten or twenty years of inaction down the track, that PWD of all ages are endangered by inaccessible environments?

Without recognition of the systemic causes of a problem, there can be no successful systemic solutions. How much “additional research” is needed before there is action? How many inquiries? How many reports? How many white papers? We need to stop looking at the trees, and look at the forest.

The solution is to inaccessibility is accessibility. The first-tier principles of mobility accessibility are straightforward and long-established. Get on with it.

[Hat tip to Andrea of the Manor of Mixed Blessings]

[1] Pediatric Mobility Aid?Related Injuries Treated in US Emergency Departments From 1991 to 2008
Alison M. Barnard, Nicolas G. Nelson, Huiyun Xiang and Lara B. McKenzie
Pediatrics published online May 24, 2010;
DOI: 10.1542/peds.2009-3286

©2012 FWD/Forward. All Rights Reserved.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Got any questions for your fellow FWD commenters?

Today’s chatterday is hosted by a mantis, via The Daily Squee.

A note to commenters: Please, as with other threads, keep the length of your comments down. A usual guideline, in the absence of extenuating circumstances, is to stick to around three pithy paragraphs or so, and to avoid making back-to-back comments.

©2012 FWD/Forward. All Rights Reserved.