From the Disability Curious Tumblr blog.
Tuesday, November 12, 2013
Advocacy Updates
Andrea Shettle’s Tumblr - November 12, 2013
More calls needed today for ratification of the UN Convention on the Rights of Persons with Disabilities, (CRPD). Call:
Senator Corker at 202-224-3344
Senator Menendez at 202-224-4744
For complete information on the Disability Treaty, updates, and advocacy tips, visit http://www.disabilitytreaty.org.
As it says in this update, “This is a marathon - not a sprint.”
Crazy Crip Girl - November 12, 2013
A few weeks ago I posted about someone I’ve been following on Tumblr, who left her supermarket job because of her employer’s mishandling and ultimate denial of simple accommodations to deal with an accessibility problem they created. There’s good news to report:
"I’ve since found a new job. I’m currently in my training week. Their registers aren’t accessible, but they allow me to transfer to swivel stool when I’m at the register so it works out very well. I also get discounts, free food (no seriously), and paid lunch breaks.”
Getting a better job so soon isn’t precisely an example of successful advocacy, but it’s really a spectacular example of the fact that proper accessibility and accommodation are often truly a matter of choices, priorities, and attitudes. These two supermarkets probably deal with the same underlying physical conditions, but seemingly have opposite approaches to them. One is all about avoidance and narrow-minded thinking. The other is about common sense and flexibility. It would be great if some publicity could come out of this so the public could see how accessibility and accommodation can and should be done.
Monday, November 11, 2013
Talk About It
Chavistory’s Notebook - November 1, 2013
This is the most clear and concise discussion of something I've felt very strongly about for a long time ... when and how to discuss kids' disabilities with them. The writer is talking about autism, but I think it applies equally well for just about any kind of physical or mental disabilities. Teachers should read this, too.
The ideas here help explain why I felt so uncomfortable with the episode of "Parenthood" where Max's parents suffer over Max finding out he's got Asberger's Syndrome. Spoiler: they are way, way more torn up about it than Max is.
Disability News
Steve Vogel, Washington Post - November 10, 2013
This is a surprisingly sympathetic profile of Gen. Eric Shinseki, Secretary of the Department of Veterans Affairs. Maybe it’s a puff piece, but even with that possibility in mind, this article left me admiring Gen. Shinseki, and optimistic that the VA’s well-known problems might actually be on the way to being fixed. If nothing else, it sounds like Shinseki has good policy instincts that are firmly on the side of helping veterans, rather than guarding the bureaucracy. The irony is that if Shinseki was more of a gate-keeper, he’d probably be less publicly criticized.
Marc Santora and Benjamin Weiser, New York Times - November 7, 2013
Robert Lewis, NPR - November 9, 2013
I can easily imagine the average non-disabled reader wondering how in hell any city is supposed to handle disabled people in a natural disaster. The thing is, it’s probably going to end up being a few fairly simple steps that just get forgotten … like mobilizing wheelchair-accessible buses. It’s amazing how often otherwise intelligent people forget to think of basic transportation for people with disabilities who can’t ride in any old vehicle and don't own their own adapted vans. They have no concept of how limiting it is to a person’s mobility, and to their ability to take responsibility for their own safety. As for not being able to leave a building because of out-of-order elevators, I’m not sure what the fix for that is. Hopefully, with this court ruling and a new city administration coming in, disability advocates and city officials will actually work together to come up with practical solutions. Just repeating, "It's too hard, it can't be done" won't accomplish anything.
Sunday, November 10, 2013
Disability Jocks and Nerds
I’m posting this video of John Hodgman speaking at the 2009 Television and Radio Correspondent’s Dinner for two reasons.
First, it’s funny and surprisingly touching, especially if you still have some affection left for President Obama. Second, it’s the the most clear and insightful discussion I’ve ever seen of “Jocks” and “Nerds”. And that’s important because I am coming to think that some of the divisions within the disability community parallel the Jock / Nerd divide.
While there are dozens of categories and subcategories within the disability community, I think we can see that there are two rough but recognizable approaches to disability as a topic and an experience … approaches that could be described as Jock and Nerd.
Disability “Jocks” are generally optimistic, gregarious, and practical. They mostly project a “can-do” attitude. Even their approach to disability prejudice and injustice is positive; a little education, a few policy changes, some more barrier removal and everything will be fine!
Disability “Jocks” are generally optimistic, gregarious, and practical. They mostly project a “can-do” attitude. Even their approach to disability prejudice and injustice is positive; a little education, a few policy changes, some more barrier removal and everything will be fine!
Then there are the Nerds, who are more introspective, a bit dour, less interested in being “just like everyone else”, and more aware of being a distinct subculture. Disability “Nerds” don’t just embrace the “social model” of disability, they disassemble it, reassemble it, and examine it from every angle. They dig into the experience of disability on every level. Like the Jocks, the Nerds experience injustice and want to correct it, but they tend to view ableism as deeply rooted and often intentional, not just a series of misunderstandings and policy tweaks.
I think this can help explain at least some of the “disabled on disabled” conflict we see in the broader disability community. Disability Nerds are uncomfortable with the seemingly relentless positivity of the Disability Jocks. The Disability Jocks get sick of the Disability Nerds’ obsession with terminology and harping on the negative all the time. Nerds think Jocks are too concerned with “acting normal”. Jocks think Nerds are too caught up in abstract theories of identity and justice.
I could keep going with this, examining how social class, income stability, and disability from birth vs. disabled later in life factor in, but I’ll stop for now and ask, is this idea helpful? Am I onto something? Also, are you a Disability Jock or a Disability Nerd?
Saturday, November 9, 2013
Thinking About Winter
Tiffiny Carlson, New Mobility - November 6, 2013
I’m not a “wheeler”, but winter here in Northern New York isn’t easy for me. It’s not easy for anyone, but there are a few specific hazards that loom extra large in my life between early December and late March.
- I can’t shovel snow. This is less of a problem since I moved to a rented apartment building five years ago, but at least four or five times per winter I’m one of the last people in the building to try walking down the long ramp to the parking lot after a snowstorm, and can’t use my car until my friend Andy can make it over to dig it out.
- I have become, if anything, more afraid of ice underfoot than I used to be as a kid and young adult. “Wheelers” have their own difficulties with winter navigation, but there are many times I’d rather be in a wheelchair than trying to make my way over unfamiliar terrain on my unsteady pins. You get to know the various colors, textures, and light-reflecting effects of the different kinds of snow and ice that coat the ground. You also, hopefully, learn how to fall down properly.
- The most humiliating problem I run into is my car door freezing shut. Why humiliating? Because usually, it’s frozen just enough to prevent me from opening it, but not enough to make it at all difficult for anyone with anything like normal arm strength and finger dexterity. Rationally, I know it’s nothing to be ashamed of, but I feel silly anyway when after 15 minutes of my futile tugging, a kind passerby opens the door with a little pull and a tiny *clink* of breaking ice. A sturdy kitchen spoon sometimes helps me pry the door open, but then I have to remember to carry a stupid spoon out with me if I think the door’s going to be stuck again.
- I could also buy an automatic car starter, so the car would heat up before I got to it, but that’s one of those helpful, adaptive steps I’ve been unwilling to take since I bought my current car. Sure, it’s kind of expensive, but that’s not why I haven’t done it. Some might say it’s toughness, or determination to do things unaided. Or, maybe it’s bull-headedness … or stupidity.
Really, though, the winter hardships I face are trivial compared to the people I know who have physical disabilities and don’t drive. America is a car-centric culture, sidewalks are an afterthought, pedestrians are second-class citizens, and these facts are never more dire than during winter in a northern climate, in anything smaller than a small city.
Streets are always plowed and sanded. It’s one of a handful of things little towns and villages are really good at, and practically the only thing small town taxpayers don’t mind paying for. But, in my home town anyway, sidewalks are left to patchwork "voluntary compliance”. There’s an ordinance requiring property owners to clear their bits of adjacent sidewalk, but there’s little enforcement and no coordination. The idea of having city employees clear sidewalks is considered an extravagance, and … I kid you not … a symbol of the deterioration of civic virtue, because all the good citizens should be keeping the sidewalks clear voluntarily, out of a sense of neighborly duty!
So, wheelchair users, blind people, people who use canes, crutches and walkers, and anyone who can’t drive never know from one day to the next if they can get from point A to B, whether the route to work that was clear yesterday will be icy or totally blocked by snow … either fallen snow, or snow pushed out of the road and onto the sidewalks. Meanwhile, everyone else click their tongues and shake their heads at the irresponsibility of property owners, and complain loudly when they see a wheelchair user forced to make their way in the street. But just plowing all the sidewalks is impractical.
Yeah, that’s a sore point around here, especially for disabled people.
I’m with Tiffiny Carlson, though. I’ll probably never move to a milder climate. I’d miss “real” winter. After all, there is no better justification for sheer, lazy, stay-at-home-ness than a good snowstorm.
==========
PS: I got the Ned Stark "Winter Is Coming" picture from this wonderful short Tumblr post for "Spoonies" ... people with chronic pain / illness, another kind of disability that can make winter more difficult.
Friday, November 8, 2013
What The Hell ...
I watched this yesterday and decided not to post it, but now I’m thinking, why not?
I could’ve sworn I heard Bevis and Butthead in the background, saying, “Fire! Fire! Fire! Heh, heh! Heh, heh!"
The (Disability) Bechdel Test
Is there a disability equivalent of the Bechdel Test? Can we design one?
The Bechdel Test is a three-point criteria for assessing the portrayal of women in movies, television, or literature. A work “passes” the Bechdel Test if it:
1) Features at least two women, who
2) Talk to each other,
3) About something other than a man.
It’s such a simple test, but so powerful. When you first read it, you think, “What’s that supposed to do?” But then you remember movies, TV shows, and books with important female characters, you realize how few of them pass The Bechdel Test, and you think, “Holy shit. That would really change things up!"
Another reason why the original Bechdel Test is so influential is that it focuses on a fairly specific and easily accomplished change, but one that corrects or compensates for a great many diverse flaws in the portrayal of women in popular culture. A few good scenes of women talking about their work, life dreams, and friendships can make up for a lot of gratuitous nudity, stereotypical “cat fighting”, and abusive men in a story. After all, sexism is still part of the real world. But pining after and competing over men isn't the only way that women relate to each other and to the world.
Since disability prejudice and stereotypes are also common in real life, we don’t necessarily want to eliminate all traces of them in entertainment. Instead of simply listing what we don’t want to see in disability depictions, we should ask what can we add that helps balance out the bad with the good … the ham-fisted with the nuanced.
Before brainstorming my own ideas, I Googled “Bechdel Test disability” and found some great suggestions from other bloggers and commenters. Here are links to postings from two bloggers, with their suggested points:
Capriuni - December 2, 2012
1) There is at least one character who has an actual disability (with consequences)
2) The character is in the story to resolve a conflict of his or her own
3) Curing the disability will not resolve that conflict.
The same blogger posted an update and simplification on a message board on December 2, 2012:
1) There's a disabled character visible
2) Who wants something, and tries to get it,
3) Other than a) Death, b) Cure, or c) Revenge.
Dave Hingsburger, Rolling Around In My Head - March 4, 2012
1) There (is) a character with a disability in the movie
2) Who exists and takes action independantly without support or approval from others.
3) And who comments on disability as a real experience - not an enobling one, not one of pity, or one as comic relief.
Dave Hingsburger, Rolling Around In My Head - March 14, 2012
1) There (is) a major named character with a disability in the movie who exists and takes action under personal motivation without needing approval from others.
2) And who comments on disability as a real experience - not an ennobling one, not one of pity, or one as comic relief.
3) And who isn't smothered with a pillow or done away for their own good.
I like that last bit!
Actually, I like all of these points. However, I think we still need to narrow the focus a bit, onto something that writers can easily implement, without completely remaking the stories they want to tell, and something that makes a clear difference without itself seeming like too much of a deliberate tactic.
Here’s what I’ve come up with so far for a Disability Bechdel Test, with some explanatory notes:
- Two or more disabled characters supporting or advising each other on disability-related matters. (Rather than a non-disabled character “confronting” a disabled character’s depression, resignation, or self pity).
- One or more disabled characters who are involved in stories, events, and conversations not related to their own disabilities.
- Disabled characters portrayed as having both good and bad qualities. (Rather than one-dimensionally angelic, bitter, or terrifying).
- One or more disabled characters who have role in the story more complex than "the disabled character”.
- Wheelchairs and other adaptive equipment resemble what people actually use in real life. (Rather than generic hospital equipment, unless poor equipment is part of the story).
- We get to experience at least part of the story from the disabled character’s point of view. Rather than the disabled character only seen in how they affect other characters. (Rather than the disabled character seen only from other character’s point of view).
Yeah, still too many different ideas and nit-picks.
Next Friday I’ll revisit this list, maybe add to it, and take a look at which familiar movies and TV shows with disabled characters would pass or fail a Disability Bechdel Test.
Thursday, November 7, 2013
The Doctor and The Guillotine
Is there anything to say about the “Tory” (read conservative) ex-Deputy Mayor and physician in the UK who said that severely disabled children should be guillotined?
Sure … a few things:
- “The Daily Mirror” is, I believe, a bit like the “New York Post”, kind of a sensationalist rag, about as subtle as a sledgehammer. I’m not sure what that suggests about how to take the story, but I hope appearing in the paper doesn’t discredit the story itself, if it is, in fact, true.
- It sounds like everyone with any connection to this guy is falling all over themselves to denounce, investigate, and penalize him in some way. That’s encouraging, but it’s also easy to do, because his remarks were so inflammatory.
- I wonder what the reaction would have been if instead of referring to the guillotine, he’d used some more medical terminology, like “euthanize” or “withhold treatment”.
The point being that this particular man is easy to throw rotten fruit at, but the level of outrage doesn’t necessarily reflect how much people reject his general point of view. Some people think some scary, repugnant shit that they rarely say out loud.
Hospital Memories
I had all of my disability-related surgeries at the Montreal Children’s Hospital. I don’t know if that’s because it’s where all complicated pediatric cases in Plattsburgh, New York were sent at that time, or because my father had done some of his pediatric internships there. Nowadays, people from our area go to Fletcher Allen Healthcare in Burlington, VT, or the Dartmouth-Hitchcock Medical Center in New Hampshire if they need specialist stuff, but back then, I think Montreal was the place.
I don’t know exactly how many surgeries I had there. When I was around 8 or 9 years old, I remember finding out that I’d had like 10 surgeries to that point, several of them when I was an infant or toddler. So I’ll take a guess that the total might be 11 or 12. Strange as it may seem, I don’t think I have a definitive record of my early medical history. I think for fun I’ll get in touch with the Montreal Children’s Hospital to see if they can send me any old records they might still have. I’m also kind of curious to visit the place again, sometime before they finish the new building in 2015.
Some things I remember about MCH and my experiences there:
- By far the best thing about my yearly checkups at MCH was that we would get lunch at McDonalds afterwards … something that just never happened with my parents back home.
- The dominant smell of the place was chicken soup.
- The night before my last procedure there … extensive spinal surgery … they prepped me at 5 AM. This meant that they washed and shaved by back and covered it with a sterile sheet. And there I lay in a kind of drafty, chilly hospital room. My father came in and saw this, got pissed off, and covered me with a blanket. This caused a minor uproar because it meant they had to wash my back all over again.
- That surgery was the first time I got a taste of addiction. I hated, hated needles at that age, but after a few days I got to where I literally counted the minutes until I could have another shot of whatever powerful pain medication they were giving me. I assume they did everything right because I never got truly addicted in a harmful way, but I do remember a distinct cycle of pain followed by relief that seemed to have more to it than the actual pains in my back.
- A woman who went to our church at that time recorded herself on cassette tapes reading “The Lion, The Witch, And The Wardrobe” for me to listen to while I was in the hospital. I still reread the Chronicles of Narnia every few years.
- While I was in surgery, my parents made friends with a woman who was waiting for her daughter who was also in surgery. They had come all the way from Jamaica for the operation. I remember the mother visiting my parents and me in my room, and I think maybe Mom and Dad went to see her and her daughter in her room, too.
- My mother stayed in Montreal most of the time I was in the hospital, at the apartment of a very good friend of my parents. The place was just a few blocks away from the hospital, so Mom would walk back and forth. I remember her telling me about walking back to the apartment through a blizzard, saying that it was both scary and beautiful at the same time. Snowstorms in Montreal are like that.
I can't say I have happy memories of MCH itself, but I have some happy memories indirectly related to it, connected with that time of my life and the people around me then.
- Wikipedia: Montreal Children’s Hospital
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