Tag Archives: wheelchair user

Recommended Reading for 17 September, 2010

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Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

From BBC’s Ouch, by Charlie Swinbourne, Deaf country life v deaf city life:

I’m soon to become a Dad for the second time, so we’ve started thinking about the long term, and where we want our children to grow up. With houses on the pricey side for anything bigger than a shed in our area of West London, we’re currently wondering whether we’d be better off bringing up a family outside the city. […] The capital is full of opportunities for deaf people, with weekly deaf pub meets, regular events, accessible cinema and theatre performances, and numerous deaf centres and sports clubs.

Badgermama presents Kids and wheelchair manners:

Please stop yelling at your kids just because they’re 20 feet away from a wheelchair! Nothing bad is going to happen. It really pisses me off when someone grabs their kid, yanks them “out of the way” and yells at them, just because I’m in the same grocery aisle or on the same sidewalk. Usually, the kids are nowhere near me. All these people are doing is teaching their children that people in wheelchairs are scary and weird.

Some good news from ysobel of i hear the voices when I’m dreaming in *sags in relief*:

So, there’s been this whole saga with trying to get a ramp to the front entrance of our church, made vastly overcomplicated by the fact that the church is a designated historical site blah blah blah. […] The church appealed to the city council, who had it on the agenda for tonight, after several postponements on their part.

Leah at Cromulent Words writes You Can’t See My Pain:

You don’t see me not talking about disability in class because I’m fraid of being silenced again. You see someone who doesn’t care about the assignment.

At random babble…, our own OYD writes Medical Autonomy Chronicles: The Virgin Pap Smear (do be warned, it’s graphic):

For all the talk of how having sex outside of marriage or whatever message had been pounded on me for however long, and how it would leave me hollow and leave me feeling worthless and damaged, and for all the ways I had been told that casual sex would leave me reeling and feeling depressed and with a hole of missing self-esteem, nothing I did in my consensual sex life has ever compared to the way that pelvic exam and pap smear felt to me, a fourteen year old girl. A person rising on the crest of womanhood, not yet there but ready to fly, and having had myself violated before I took my first steps.

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Ableist Word Profile: Wheelchair Bound

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Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

I considered making this entire post “People don’t like being told they’re wheelchair bound. Stop doing it. Try ‘wheelchair user’ instead. Thank you.”

Then I remembered how often that argument is rejected. [My favourite: But I don’t like the terms that people with disabilities prefer, and I’m way more important!]

[I used to make really flippant comments about how no one is actually bound to their wheelchair, in order to make people think about what their words meant. Then I started reading reports of people being bound to their wheelchairs and, in extreme cases, left to die. Flippant comments are less funny after that.]

Shackling language like “wheelchair bound” is problematic because it leaves the average listener with the idea, again, that wheelchairs are a tragedy. You’re stuck in one, and it’s horrible, and you can’t do anything or go anywhere and it’s so very very sad, and isn’t their life such a tragedy. Just because of being bound to that wheelchair.

The thing is, a wheelchair is the exact opposite of a tragedy. As the blogger at Accessibility Net in New Zealand put it:

I then explain: I’m not wheelchair bound. I’m not tied to the wheelchair. To use the term “wheelchair bound” implies *limitations*. When in fact, the wheelchair is a tool of freedom. It’s without that wheelchair that I am seriously limited.

So each time I am told I am wheelchair bound, the implied message I get is “you’re in a wheelchair, you’re limited”. Yeah, I’m in a wheelchair, it gives me wings!

A white woman (Anna), sunburned and tired looking, stands behind a white man (Don), also sunburned and tired looking, in a manual wheelchair. They are posed in front of a wooden figurehead of a mermaidThis certainly mirrors the experience Don had when getting his sexy sexy wheelchair of awesome. He went from not being able to get out of the house more than once a week, if that, to being able to not only go out several times a week, but doing it with only limited pain. The wheelchair opened up the possibility of our enjoying this strange, hilly city we moved to. [That’s us in the picture, after two days of handling the hills in historic downtown Lunenburg. Usually he uses an electric wheelchair, but we rented the manual for the trip. I vividly remember how exhausting getting up those hills were, which I think is obvious if you look at both our faces.]

Wheelchair user also reminds us who is (or should be) in charge of the chair. The person using the chair should be directing it, even if they’re not able to control it themselves. [This is a great post by Wheelchair Dancer about how to push a wheelchair. Learn it, live it, love it, folks.] When we talk about people who are using wheelchairs as though they have some agency, we’re reminding ourselves and others that they should have that agency.

Thirdly, wheelchair user is inclusive of people who are either full- or part-time wheelchair users. There are people who only have to use a wheelchair during high pain days, or in the winter, or after an accident, or for only six months, etc. “Wheelchair bound” always has an air of permanence to it, while wheelchair user can be both permanent or temporary, and using terms like full- or part- time wheelchair user reinforces the idea that folks who only use wheelchairs for certain activities aren’t faking a disability.

I hope this much longer version of my originally-planned post still gets at my basic argument: People don’t like being told they’re wheelchair bound. Stop doing it. Try ‘wheelchair user’ instead. Thank you.

Let’s talk about the weather

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As I type this, Halifax is getting its first snowfall of the season.

To me, this is “Yay! snow!”

To Don, this is “Well, I guess I’m not going out anymore until spring.”

We live in a really shite neighbourhood for snow-clearing. Although our landlord is excellent about keeping the snow and ice off the area in front of our building, there are two places on either side of us that aren’t. One is a business, so I’m not sure what’s up there. The other is a private residence, and there’s a variety of reasons that could be happening, including that the person living there may have a disability and/or be a senior and be unable to clear their walks.

Whatever the reason, once the snow builds up, the only way for Don to get his wheelchair anywhere is to go on the road. This is not exactly the safest thing to do.

Then, once he gets into the cleared areas, we get into the issue of how bad the sidewalks are. There’s a curbcut up on Barrington Street that gets filled with snow from the clearing and is very difficult to get through, even with the electric wheelchair. There’s another one on Hollis that just turns into packed ice every winter and stays that way. The sidewalks on our street date back to 1978 and are so riddled with holes and deep cracks that it’s a very bumpy and uncomfortable trip, assuming he can get through to them in the first place.

There is a snow removal program for seniors and people with disabilities in Halifax, which is great, but it’s not something that can actually help us in this situation. Because no one is actually breaking the law (you must clear the snow within 72 hours of the end of snowfall – and it snows about every 3 days), we can’t make a complaint to the city. I have tried complaining about the sidewalks and curbcuts in the area, but get the run-around.

But hey, it’s snowing! Yay?

Recommended Reading for November 3

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If you have a child with Asperger’s

When I was a little girl, nobody knew the word Asperger’s. My way of being was called “weird,” “strange,” “slow” and other equally nice things. Today, we are finally getting to understand that not everybody is neurotypical, that the variety of human difference is huge, and that, most importantly, it’s ok.

Everybody on the spectrum is different. There is no single list of characteristics that would encompass all of us. Still, when I think about it, there is a whole range of things that people around me could have done when I was a child to make my existence easier. So if you have a child who might have Asperger’s, these are the things you should consider:

1. First and foremost, it is not the end of the world, a tragedy, or a reason to feel miserable. It isn’t a disease or “a public health crisis”, as some ignoramuses claim. It’s a way of being that is in no way worse or inferior to yours. I believe that in some ways it might actually be better. There is nothing in this condition to prevent your child from being happy. Of course, she will be happy on her own terms and within her own way of understanding happiness.

Transcription, because you do too much

A choice to engage in dialogue, discourse, or movement-building without making a commitment that any video used will be transcribed has a real cost in terms of cutting progressives out. A commitment to accessibility, combined with intersectional issues that make one short on time, energy, or spoons, has a real cost in terms of cutting progressives out. We can’t do it alone, people!

As a member of the progressive community, I have something I can give to help with that.

Quickhit: Pedestrian Bridge Lifts Turned Off At Night:

Oh, but it’s only at night, right? Surely all well-cared-for people with disabilities are locked up at night. So this would never be a problem. Right?

Halloween on Wheels

It seems slightly wild and bubbly-making to be thinking about partying (a little). Karaoke (OMG, yes)?? Costumes?? Yes. I’ve been wondering though about disability specific — OK, wheelchair specific costume. I mean, where is the disability/wheelchair culture that would enable us (cuz it would have to be one of us — don’t want to repeat the disability equivalent of blackface) to joke about ourselves in a Halloweeny kind of way.

Dreams aloud for a second. Well, the costume would have to embody both chair and user. I can certainly see wheel wings, but what would the scary, exaggerated, ironic wheel thing be? A flat just isn’t funny. I often refer to my wheels as my ass — could something be made out of that. Envisions wheels and buttcheeks together. Shakes head. Tries to wipe mind tv. Wheels with spikes, studs, water pistols –OK. Done before. But perhaps a starting point. How to ironize wheels?

Via Wheelie Catholic’s twitter feed: This family needs help buying an expensive device that would allow their daughter to communicate:

“The sad thing is that with a lot of these kids, you can tell the lights are on upstairs, but unfortunately, they almost become a prisoner of their own body,” said Shayna’s mother, Kym.

Spastic quadriplegic cerebral palsy is the most serious form of cerebral palsy. It’s a disease that’s difficult on both those with the disease and their loved ones — but not one without hope, thanks to new technology.

A $15,000 device, the Dynavox Eyemax, would make it possible for Shayna to communicate. An infrared light on the machine’s screen has the ability to “read” her pupils, detecting where and what she is looking at, and then speaking for her.

Recommended Reading for November 2

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It’s my favourite Monday of the year! The clocks fell back an hour for most of Canada last night so I feel like I’m up extra early and have lots of time to accomplish things today!

Not that this actually works out in practice.

What I Want To Write To Abled-People But Don’t:

How do you talk to a disabled person?

Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don’t know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don’t mean themselves. I’ve found what they said to be true. My suggestion is to at least try, because often you’ll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone–about the kids’ school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don’t know me, make the same small talk with me as you would with anyone. If you already know me, I’m truly the same person. If you’re feeling awkward about wheelchair use, work on overcoming that; I don’t feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won’t make eye contact, say hello, or speak to me anymore. If you’re so concerned that you’ll be rude that you’ll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:

The Knitting Community Has Assholes Too:

So I posted an innocuous, friendly sort of post in the large and voluble lace-knitting forum on Yahoo about knitters with disabilities which keep them from reading charted patterns. Correction–the knitters themselves had brought up their experiences and frustrations, and after some back-and-forth on the subject, I thought, “Hey, let’s see if anyone’s willing to send polite notes to publishers, en masse, to bring the problem to publishers’ attention.” Cos hey, I love my charts and I find following written instructions really difficult, but that doesn’t mean that knitters who can’t read charts due to a disability should have to miss out on the fun.

Well goddamn, you would not believe the sheer hostility that erupted. One woman in particular posted a rambling screed about how her mother had polio, but “overcame” her disability and got angry when people offered to help her; she then claimed that the knitting world didn’t need to be “fixed,” and that she was being discriminated against. I’m not sure how anyone is discriminating against this able-bodied person; did a brigade of visually-impaired and neuroatypical knitters march up to her house and forcibly steal her charted patterns? (Given how hostile her response was, I think I’d enjoy seeing that!) Language about “preferences” (a very different thing from a disability) and defensiveness about how it’s okay to like charts proliferated in the discussion. If suggesting that all knitters should get to enjoy their craft is such an offensive idea–if the idea of someone else sharing the dignity means, to these people, that there’s suddenly not enough dignity to go around, as if dignity was some kind of limited-quantity resource–then yes, the knitting world does need fixing. Then again, the world in general could use a little fixing, by those standards.

Denise Handicapped:

Last week on Curb Your Enthusiasm, Larry meets a woman named Denise in a coffee shop. They flirt and Larry asks her out. Larry is excited about it… until he sees Denise is in a wheelchair.

Larry is clearly repulsed by the idea of going out with Denise but as he tells his friend Jeff, “I was stuck. I didn’t want her to think I was a bad guy.” Jeff tries to reassure Larry that it’ll be okay to date a woman in a wheelchair by saying, “It’s an adventure, it’s an adventure.” Yeah, Larry, dating a woman who can’t walk is like a trip to see the freaky disabled woman in the sideshow at the circus. Who knows, she may even get frisky with ya. That’ll be adventurous, for sure.

So they go on their date. As Larry pushes Denise up to the restaurant’s entrance he says, “If we’re going to have a second date, you’re going to have to get an electric chair. I’m not doing this again.” Cue symphony of tiny violins.

In the news:

House bill likely to include long-term health care [US]

House health care legislation expected within days is likely to include a new long-term care insurance program to help seniors and disabled people stay out of nursing homes, senior Democrats say.

The voluntary program would begin to close a gap in the social safety net overlooked in the broader health care debate, but it must overcome objections from insurance companies that sell long-term care coverage and from fiscal conservatives.

Female veterans complain of less pain than men [Warning: This is a mainstream media discussion of a medical report.]

Female veterans of the Iraq and Afghanistan wars are less likely to complain of painful physical conditions than their male counterparts, according to a U.S. study.

The study of more than 91,000 U.S. veterans runs counter to what is seen in the general population where women typically show higher rates of chronic pain conditions, including migraines, fibromyalgia and persistent abdominal pain.