I operate my powerchair with a joystick, like a gaming control but much sturdier, smarter, and costlier. It’s a metal post sticking out of a rubber hood. One can readily change the handle that attaches to the metal post. My joystick came with a carrot–shaped handle. I was looking for a better fit that didn’t require me to pinch my fingers. ( I didn't buy a neat one but hacked a cheap one that works well )
No wonder people who are recently disabled have such a tough time with disability - not because of the reality of the disability, although that takes getting used to without a doubt, but because of the voices, voices, voices of people throwing pity and sorrow and sadness onto a situation. How do you dig yourself out of a tough situation if people keep dumping their own shit into the hole?
When I began using a wheelchair, I couldn't parse the intense attention of nondisabled people. I thought it was personal; that I was doing disability wrong.
Nineteen ninety-three: I got my first powerchair, my city began a growth spurt, and the ADA design guidelines had just been published. This should have meant smooth rolling: many new accessible buildings!
( Yet many accessible locations are destroyed by deliberate barriers )
This is the continual battle against the normate space invaders. This is why accessible design and construction isn't enough.
If you think this barrier wasn't really created on purpose, that it's just the thoughtlessness of the ill-informed, I know that's not the case. I've visited this particular shop to inform them they've recreated barriers unnecessarily, and asked them to stop destroying the built-in accessibility. Their response is
Oh, don't worry, we'll be happy to help if you just ask.
Nondisabled people may wonder,
so what's so hard about asking? Great effort has been made to create accessible environments. Why should this thoughtless disablism require us to ask permission over and over? We are here; we are the public, as Dave Hingsburger put it so eloquently. When nondisabled people recolonize our spaces, we must regroup, react, and respond.
( How Dave Handled It )from Rolling Around In My Head: Wall Walker
I've only encountered direct confrontation a few times. But even after 23 years using a powerchair, I still hear a vile inner voice, saying "you're just not trying hard enough, if you were in better shape you'd use your rolling walker everywhere." ( My experience )
More #accessfail when you store chairs & boxes in the wide hall to toilet or cabinets inside. As those of us who use wheelchairs daily learn, our travel path is still invisible to non-W/C users & still blocked #accessfail. You may think at least W/C user needs are recognized but not reliably.
When I point this out owner usually offers workaround "if I just ask for help." But that's why ADA design is so specific & roomy): to permit W/C users to move through the world unmarked, as smoothly as "typicals."
Even when a space is built to ADA minimum standards, people can recreate barriers. "My space" that I need to move naturally is readily colonized by those of us who see it as "extra room."
ETA: first 3 graphs are a Twitter repost, which got zero response. I am prob doing Twitter wrong.
Limited net connection so PLEAE sig boost wide & far
limited net access, please SIG BOOST
SO, in the short-term, we want to explore those no-snow places for two-week (or more) vacations November - March. We don't need to stay in a fancy hotel (or rental vacation zone) because we'd probably be living in a house in town, not on the beach.
We do want to be somewhere where I can swim and MyGuy can cycle/golf and we can wander around together and enjoy being outside. I like water, but can cope with inland lakes (see: current location), seashores, large rivers.
The other minimal critical specifications:
- Good air quality
- At least three hours of sunlight every day: no month-long monsoons
- Sidewalks or ubiquitous bike paths or traffic so low I can go in the street
- Public-access pool (it could be a private health club, but I can join).
[ETA to clarify what I need re: sunlight.]
Instructables provides a nice framework for documenting your amazing projects (called ibles) so others can admire and do it themselves, as well as comment threads for more praise and good ideas.
Almost every wheelchair user is admonished to "drink plenty of fluids." But as ( Cupholders break. Here's one that doesn't )
begin quote Inclusion Daily Express saves you time while keeping you up-to-date on what people with disabilities are facing, saying and doing. Each daily edition features six or seven important disability rights stories—many you cannot find anywhere else—along with links to dozens of other articles, press releases, opinion pieces and disability columns. quote ends
Inclusion Daily is well worth the annual cost of US$160. That might seem too much to pay, but you can specify ten email recipients for each subscription. If you're part of a working group, an agency, a school district, just one sub can keep everyone in the loop, you choose whether it's weekly or every weekday.
I've been able to keep up on disability-related news from all over. I find the info inspires me to action, provides examples, educates about other people working on "my" issues, and helps me know my place in the movement and the world.
You can try two weeks for free, and see if it's for you.
Here's a sample of what I found in the last two weeks, thanks to Inclusion Daily Express
( Terrible Captions on UK TV )
So, I use captions. I loathe the state of live captioning, and I'm dismayed at the falling quality of offline captioning, as more services enter the market with seemingly no understanding of what good captioning means. From thousands of miles away, this article raises the question: Does the US's FCC* investigate caption quality? Do they supply a "how to do it" manual? Could I do something to help increase caption excellence?
*parallel agency to UK's Ofcom
( Suing for Wheelchair Access to Hotel Shuttles )
Now this is highly relevant to my SF fan interests. Most cons are held in hotels; every hotel shuttle I've seen can't carry a powerchair. Sharing this info with other fans enables them to better advocate.
( Irish= Disability Advocate's Long Life )
As sasha_feather taught me, there have always been social justice advocates. Martin Naughton was a "man of his time" as much as the hospital administrators who couldn't conceive of someone using a wheelchair outside the hospital. Dave Reynolds, Inclusion Daily's editor, casts his net very wide indeed. Sometimes the articles sampled don't represent an ideal perspective on disability rights. But always, they include the living experience of people with disabilities in the world, and that's always welcome in my in-box.
Samples from Inclusion Daily Express—disability rights news service © Copyright 2015 Inonit Publishing. Please do not reprint, post or forward without permission.
There are amazing wonderful vids out there! I hear about some through political colleagues, and some through blogs, and some from just stumbling around. Feel free to drop links in comments (reminder: can't embed videos in DW comments).
( Twenty seven summer 2013 interns at the American Association for People with Disabilities made a video meditating on the ADA's 23rd anniversary (open captions, audio description) )
POV, the documentary series for "films with a point of view" organized by the U.S. public broadcasting system, encouraged entrants to submit shorts a web-only contest. Two of these present nitty-gritty life with impairment
( Grounded By Reality explores a day in the life of an artist and art teacher who has very little control over her body (closed captions, no audio description) )
Sound of Vision uses unusual film technique as it follows a blind man through his days. As is often the case when artists or developers create parallel accessible and non-accessible versions, the film submitted to the contest (where it won six prizes) diverged from the audio-described version. There's a lot of sudden black/white shift in the film, which was headache inducing, so here's the audio description track I preferred (although I think the description should be slightly softer than the film track):
Stream or download MP3 of Sound of Vision with audio description
In addition to those shorts, POV has broadcast many films related to disability. Check 'em out:
( And of course when I think of people with disabilities I think about sex )
( What she said, what I did and didn't say )
The ideal response is not having it matter it all. Not surprisingly, Dave Hingsburger's recent entry explores what it's like when we can really not care. ( Dave Hingsburger's recent entry explores what it's like when we can really not care. )
The brightly colored ramps from the Stop Gap ramp project could be an answer, but they’re definitely steep, and many manual chair and walker users would have a hard time using them. (Which creates yet another opportunity for my least favorite response to an access request, “Gee, everybody else seems to be able to use this fine.”)
Certainly in the Madison Central Business district, at least half the older shops have one step entrance. I’ve talked to numerous shop owners about installing a temporary use ramp, and they all think it’s a good idea and then ignore me.
This post pictures and ponders the drawbacks to any “just one step” ramp initiative (as opposed to a permanent redesign which obviates the step.
1. Out on the town, sitting in the littlest room reading fanfic on the throne (as I do) and I dropped my iPod touch. ( Damage! Shining Knight in Wool Armor! Apple does good. )
2. It was rainy, so I was wearing my wheelchair rain cape. ( Who knew I'd kiss death? )
3. Saw the endocrinologist. T3 high, T4 low, TSH low. ( End may be in sight )
4. I won a drawing from the talented artist known as chkc in a successful fannish scheme to get anatsuno to Australia. Her SGA chibis are things of wonder. ( Look what she drew for me!!!! )
Please, please, check out
this post, where she productively meditates on why non-disabled people so often battle wheelchair users for control of the door.
I'm a 155lb, white woman with short pepper-and-salt brown hair and thick purple glasses. Which is probably irrelevant because the first thing you'll notice is my zooming black power wheelchair with red bag on the back. I'm 5'3" standing, but 4'3" sitting. I'll be wear a hat (oh! having to choose!) with my badge on the front.
Better Interactions through Advance Notice
Friday 9pm Making the Most of WisCon Starts wicked late at night for me but I decided to risk it. If you have any suggestions for things to communicate, feel free to let me know!
Saturday 2:30p Beyond Etiquette: How Not to Disable People with Impairments This one should be a gas! haddayr as well as two experienced and educated Anns (who aren't on DW/LJ), and sasha_feather
Monday 10a The Tiptree Award Winners That Everyone Should ReadI'm moderating this one -- the panelists have all been Tiptree jurors so I'm sure they'll have lots to say.
Ever wondered how to ensure that the maximum amount of money goes to the musician when you buy tunes? I surely have! NPR's story says (in summary). Any retail, whether online or bricks-and-mortar, takes a huge chunk out of the transaction before the musicians see any of it. Best way to buy is direct from the band.
I've been enjoying Dave Hingsburger's blog on disability issues for several years. It's called "Rolling Around In My Head," (he changed the name from "Chewing the Fat" because he wanted to fully embrace his fat self).
You can add that URL to your reading page to see his daily posts.
( Dave and Me Re the Politics of Help )
So: the ADA and what it enabled today. In my zippity, comfortable power chair I zoomed to a "regular" bus stop and thence to my accessible health club where I swam for 40 minutes. I used half of the seated showers (what the staff insist on calling the "handicapped stalls.") Most of the people I encountered treated me respectfully and without patronizing me. I saw at least 10 other people whose impairments were readily evident to me. Another bus to the next stop. I had no worries about crossing a six-lane 45mph road because my chair goes fast enough (but not, alas 45mph). There were curb ramps which almost met ADA specs almost all the places there should have been -- the speedy chair simplifies crossing the street via driveways when necessary. I stopped in three stores during these errands. At one store the counterperson dramatically jumped back and performed the Vanna White maneuver to demonstrate that there was room to move in the shop. (Oh really?) The other stores gave me exactly the same attention as the evidently enabled* people who entered at the same time.
OK, that's all about assistive technology, and there's more AT-related items I could enumerate (built-in enlarging features in apps and OS simplify computer use; cordless phones; I'm stopping now).
The biggest change has not been in my body but in my perspective. In the late 80s, I'd been educating myself on social-model, disability-rights reading, but my impairments were not yet evident to others. That disabled people's rights had been enshrined in law was hugely important to me. That the ADA used "mental illness" as an example finally tipped me into considering therapy.
So, thanks for my life, ADA: many mundane things, and a few great big ones.
The law is not enough; as Cal Montgomery taught me:
So thanks to these RL advocates, who taught me advocacy:
- Caryn Navy, who was infinitely patient with my AB privilege, remade a corner of the world at Raised Dot Computing, and demonstrated dignity through snark
- Chris Kingslow, who taught me that mental illness isn’t the end of the world
- Catherine Odette, who published Dykes Disabilities & Stuff, founded Able Lives Theater, and gave me permission to take as long as it takes
- Cal Montgomery, who decoded the disability studies stuff I couldn’t follow, made me laugh, and taught me that there is dignity in “behavior management,” as well as potential for abuse
- Mike O’Connor, who held my hand while I took my first steps into the public square
- Fayth Kail, who cranked open many minds as she served as an Assembly page in the state legislature while also campaigning for abortion rights, reminding me that advocacy has a life cycle