jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
Adaptations by Adrian makes outerwear designed for us. I've had two of their capes, and they're wonderful. The capes are custom made, so you can make sure they're short enough to clear your wheels or long enough to cover your back bag. details )
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)

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 )

jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
Dave Hingsburger is as always, brilliant:
begin quote
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?

end quote

http://davehingsburger.blogspot.com/2016/09/stfu.html

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.
jesse_the_k: sign reads "torture chamber unsuitable for wheelchair users" (even more access fail)
ETA: I wrote this for May 1st, Blogging Against Disablism Day. many more posts
http://blobolobolob.blogspot.co.uk/p/blogging-against-disablism-day-2016.html

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.

jesse_the_k: Swim fins which are also high heels. (swimmer deluxe)
Dave Hingsburger speaks to my experience as a wheelchair user who can also walk. He relates being called names by a neighbor who finds him walking the hall:
How Dave Handled It )from Rolling Around In My Head: Wall Walker
http://davehingsburger.blogspot.ca/2016/03/wall-walker.html

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 )
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
Starbucks in OKC built to ADA standards but mgmt makes #accessfail with furniture placement & storage choices. The "extra room" on handle side of a door? Wheelchair users need that space to reach the handle. You create #accessfail you put news racks, signboards or flower pots there!

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."


tl;dr
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
jesse_the_k: John Watson regards the void looking puzzled with white puzzle piece floating above him (JW puzzled)
SO, in the long term, we're thinking of moving someplace where there is No Snow.

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.]
jesse_the_k: Knitted red heart pulses larger within green and blue square (Beating heart of love GIF)
This site is catnip for the at-home mechanic. It has a wide range of fun and funky instructions, from all-cardboard storage systems, DIY security, and 3D printers that print themselves, to cooking recipes, provided in step-by-step detail.Pretty & Practical Bikes )
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.
jesse_the_k: Macro photo of left eye of my mostly black border collie mutt (Default)
Many smart writers are urging me to avoid BLACK & WHITE, a newish film with very old fashioned white family values. My favorite is Ijeoma Oluo in Seattle's alt weekly click to grin )

Almost every wheelchair user is admonished to "drink plenty of fluids." But as Cupholders break. Here's one that doesn't )
jesse_the_k: Ultra modern white fabric interlaced to create strong weave (interdependence)
For the last decade, I've been fortunate to receive the Inclusion Daily Express, an email-based news service. As their blurb promises
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 [personal profile] 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.

Movie Time!

Aug. 7th, 2013 07:45 pm
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
ETA: Forgot cut tags. Turns out they don't work the way I think they should anyway. Should I bother? Time for a poll.

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:
video.pbs.org/program/pov/



And of course when I think of people with disabilities I think about sex )
jesse_the_k: Underwater picture of chubby woman stroking and blowing bubbles with a grin (lynne cox swimming)
I had one of those encounters in the weeks before WisCon. I want to record it for posterity, and I welcome your thoughts as well.
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. )
jesse_the_k: sign reads "torture chamber unsuitable for wheelchair users" (even more access fail)
This example is better labeled “Design for none.” Not only was this stairway straight from MCEscher’s portfolio, it guarantees an unsafe trip for all users, of either ramps or stairs.

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.
jesse_the_k: Ray Kowalski is happy to be alive, surrounded by yellow rubber ducks (dS RayK's ducks)
It's been a slow, boring, sleepy time. It's been a horrifying, fast, annoying time. It's been a puzzling time, it's been a fannish time. To wit:

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 [personal profile] chkc in a successful fannish scheme to get [personal profile] anatsuno to Australia. Her SGA chibis are things of wonder. Look what she drew for me!!!! )
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
Haddayr is very very smart. And often finds just the words to explain the frustrations of everyday life.

Please, please, check out
http://haddayr.livejournal.com/686233.html
this post, where she productively meditates on why non-disabled people so often battle wheelchair users for control of the door.
jesse_the_k: White woman with glasses laughing under large straw hat (JK 52 happy hat)
Following the sterling example of [personal profile] wrdnrd, I'm inviting anyone coming to WisCon who has questions to speak up! I'll answer 'em here. If the answers annoy you, you can know to avoid me. Or maybe there will be fascinating answers and you can plan to share a meal or a stroll.

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
  • If we're speaking for more than two sentences, please get to my eye level, cause I can't tilt my head back.

  • NO HUGS, thank you. Any weight on my hypersensitive shoulders means throbbing all weekend long.

  • Hold hands! I love holding hands.

  • Don't rest your weight on my chair. I feel the tiniest shift as pain down my body, so lean on a wall.

  • PRONOUNS: She, you, me but mostly we!

  • ANXIETY: Fundamental building block of my spirit, these days. I assume the worst, and reliably misinterpret subtle cues. I particularly welcome open invitations.

  • COMPREHENSION: I'll have a better chance of understanding you if you look in my eyes when you talk.

  • SINGLE-TASKING is a talent; multitasking is a horror show.

  • There's more than one wheelchair user at WisCon. I am not Liz Henry, Susanne Blom, Stef Maruch ... or any of the other wheelers whose names elude me right now.


  • Resources
  • I'm local to Madison and I can help you find things.

  • I've been on the Concom for a while, and would be delighted to talk about volunteering.

  • if you're having a blood-sugar crash, I always have at least two emergency GF, vegan bars

  • I'll be at the hotel but if you're having a desperate craving for a dog to play with, it can be arranged.

  • I love assistive technology and will happily talk about it for ever.


  • SCHEDULE
    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! [livejournal.com profile] haddayr as well as two experienced and educated Anns (who aren't on DW/LJ), and [personal profile] 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.
    jesse_the_k: Human in professorial suit but with head of Golden Retriever, labeled "Woof" (doctor dog to you)
    Major excitement continues. Madison is the arena for a fierce battle between newly-elected Gov Scott Walker and all unions. Also many Democrats and, it seems, most Madisonians. (It's a company town, between the State, County and University. Walker's all about the cuts.) Jesse Jackson was talking today, Sarah Palin is due to talk tomorrow, and I'm planning on staying the hell out of Dodge. Navigating a crowd in a powerchair is claustrophobic at best, imprisoning at worst.

    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.
    jesse_the_k: The words "Indecision may or may not be my problem" over a blurry background (Indecision)
    While my recent surgical experience was as pleasant as those things can be, it's taken me longer than I expected to recover. I've even had time to watch -- well, flip through the channels -- day time TV. My menstrual timing and hormone levels #flash# led me to believe I was in menopause already. Now I understand that removing my ovaries makes a qualitative difference. #flash#

    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).

    http://rollingaroundinmyhed-feed.dreamwidth.org/
    You can add that URL to your reading page to see his daily posts.

    Dave and Me Re the Politics of Help )
    jesse_the_k: White woman with glasses laughing under large straw hat (JK 52 happy hat)
    I'd hoped to have a delicious thinky post about the difference 20 years of the Americans with Disabilities Act has made for the world, the nation, the state, and me. Meditating on those topics proved so depressing I didn't even leave the house yesterday. Ha! Depression is the gift that keeps on stepping on my toes.

    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:
    Discrimination is always illegal; only activism makes it unwise.

    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

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