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.
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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
Wednesday, November 6, 2013
How To Tell If It's An Institution
Social skills for autonomous people Tumblr blog
The first thing I thought of when I read this post was a speech I heard at an Independent Living Center conference, I don’t know how many years ago. The speaker was talking about how institutional care facilities for the elderly and for people with cognitive impairments were becoming more sophisticated in how they marketed themselves. They had caught on to the fact that people no longer just accept nursing homes and large residential facilities, and are looking for care solutions that feel more “home-like”.
As a result, the lines between true Independent Living and “prettied up" institutional care were being blurred. They still are. And many people with disabilities in need of daily assistance are genuinely confused about what is “independent” and what is “institutional”. The speaker ended her talk with a bullet-point list of questions a person might ask themselves to realize whether or not they are living independently. I don’t remember all or even most of the list, but here are a few I do recall:
"Do you own the utensils you eat with?"
"Do people have to knock and wait for you to answer before coming into your room?"
"Do you have a lock on your residence with a key that you hold and control?"
"Do you choose the people you live with, or whether or not to live with anyone at all?"
"Do you decide what and when to eat?"
"Do you own the sheets and pillows on your bed?"
When I heard these questions, it felt like a bubble popped in my head. All of a sudden I realized that independent living wasn’t about the number of roommates you have, whether you rent or own, or even whether you live on your own or with your parents. It isn’t about doing what you want or some concept of “control”. It’s about ownership, privacy, and personal boundaries. It’s more about “how” and “who" than it is about where. You can't fake these things with extra potted plants or ice cream on Sundays.
If you’ve never even come close to needing extensive daily care, you may not understand how important this is. If you have spent time in an institution, or have come close, I hope this rings true to you.
Tuesday, November 5, 2013
CRPD Hearing Today ... Act Now
Sen. Robert Menendez and Sen. John McCain, USA Today - November 4, 2013.
"This treaty is consistent with our nation's interests and values. The Senate should ratify it this year."
People for the American Way - November 4, 2013
Andrea Shettle's Tumblr - November 5, 2013
"While right-wing groups circulate irresponsible rumors about imaginary impacts of the CRPD, international disability rights advocates are left without an important tool for their work – the United States’ approval of international standards based on US law. The Senate now has a second chance to listen to common-sense voices of support for the treaty – including leading disability rights, civil rights and business groups – and reject the unhinged rhetoric that brought down the treaty last year."Today, First of Two Hearings on Disability Treaty Convenes
Andrea Shettle's Tumblr - November 5, 2013
"The disability treaty issue is not just an important issue about disability rights. It is also a major test for the Senate to see if they can bridge their political differences and work together on a common cause. Disability rights has traditionally been an issue that legislators of all parties can get behind. We have to remind them that they cannot stop now."
Sign a petition, write, email, call, and Tweet Senators on the Foreign Relations Committee.
If you really want to dig into the details and find out why ratifying this convention is both worthy and essential, watch this video:
Monday, November 4, 2013
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