Patrice Jetter is a force of nature. She’s joyous in her clothes and her hobbies (sewing, painting, model railroading) and her confidence in small acts of kindness. She found love with Garry Wickham and they want to marry. They can’t afford to because they’re both disabled. Marriage would end their access to US Federal health insurance and income support.
Thanks, ![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
pauraque for giving me S for this six-question meme.
Something I hate
scented shampoo, soap, or similar substances. Fragrances like these trigger coughing fits and sometimes migraines. Weirdly, I developed this sensitivity after I quit smoking 10-15 cigarettes/day.
Something I love
sencha green tea, in particular Telsaan Sencha Spring Shizuoka, tragically out of stock
Somewhere I have been
Skópun, Sandoy, Føroyar (Faroe Islands). more about that trip
In 1971, I visited my sister & her husband for two weeks. He was studying Skópun and its people for his PhD in anthropology. She was studying everything in sight. My sister wrote a novel about it and my former-brother-in-law wrote several scholarly books. I took many wild ferry rides, snacked on skerpikjøt (fermented lamb) and turranfisk (fermented fish), and admired the beauty and strangeness of these tiny islands in the middle of the Atlantic. This was decades before the first undersea roundabout connected most of the Faroe Islands with roads.
Somewhere I would like to go
Shetland Islands, Scotland or Svalbard, Norway, especially during midnight sun season.
Someone I know
sasha_feather! I introduced her to a disability rights framework at WisCon. She enthusiastically joined in and succeeded me as WisCon Access Chair. She introduced me to Stargate Atlantis thence LJ thence DW fandom. We’ve had weekly lunches almost continuously for more than a decade.
Favorite movie
I'm drawing a complete blank. I loved Miyazaki's Spirited Away when it first came out--I should rewatch and see if still shines.
Want to play? Raise your hand for a letter.
Seventeen years ago, I volunteered to join the convention organizing committee (concom) for WisCon, an annual feminist SF convention held in my town. For sixteen years, the month of May was a festering cauldron of anxiety as I prepped for the event. Even after I handed off all my duties to other concom members, I couldn't let it go. Arghh, brains.
This May has been easier because WisCon is taking a Gap Year. If you're feeling chatty, the WisCon Gap Year Discord Server is for you. ( how to participate )
I'm proud that my concom work helped to provide a foundation for a more accessible WisCon, and thrilled that other event planners built on that work.
I learned a lot at WisCon, and I think the conversations we had, the relationships we built, the connections we nurtured have changed the SFF community. At its founding, WisCon made a place for feminist exploration. I think WisCon was part of a generational shift that means those conversations are happening all over the SFF world. If it turns out that 2023 was the last WisCon, it was a rousing success.
Another great column from s.e.smith, who goes deep into the flock of starlings metaphor. The topic is the surge of people newly disabled by post-acute sequelae of SARS-CoV-2, better known as Long Covid. While disability elders can see this as a chance to mentor the newbies, it’s also a chance for us to see the world anew:
( 340 words )
https://catapult.co/stories/se-smith-year-in-review-long-covid-disability-chronic-illnessThis is an initial draft -- comments welcome! In particular, I'm addressing "wheelchair friendly." I lack the experience to address sensory friendly.
This panel is WOW! Three disability justice elders tomorrow!
Wednesday 13 April 2022 6p CT - 7pm ET - 2100 UTC
“The Future of Disability Justice” panel featuring Alice Wong, Leah Lakshmi Piepzna-Samarasinha, and Mia Mingus
Register at https://tinyurl.com/DisabilityJustice22
Presented by Asian American and Asian Resource and Cultural Center at Purdue University. Reg form asks for "Purdue email" but my Pobox.com address worked fine.
DJ background: https://projectlets.org/disability-justice
kestrell linked me to the most eloquent sheribyrnehaber’s concise dive into why disabled people’s days have a different length than non-disabled people. I noticed her newer article Are bad graphical descriptions better than no graphical descriptions to someone with vision loss?. Her answer is basically, "no."
Given that a month ago I was whining about the "Accessibility Overlay" racket, accessiBe in particular. I was very pleased to see Sheri Byrne-Haber join with 200 other folks working in accessibility on the Overlay Fact Sheet.
Connor Gardner CatchTheseWords is a blind disability rights advocate. His recent post Do Automated Solutions like #AccessiBe Make the Web More Accessible? alerted me to an ongoing debate: do "AI-based" automatic site plugins actually provide useful access for screen reader users?
There are scores of one-step automatic accessibility plugins designed for CMSes like WordPress or SquareSpace — some free, some very expensive.
Connor Gardner is dubious. He points to Adrian Roselli -- a very experienced web dev who’s focused on accessible design since 1998. Roselli’s article accessiBe will get you sued is dubious in much greater detail.
The plugin developer in question, accessBe, asks critics to take a step back and see if "manual" solutions are even possible at this point.
https://accessibe.com/blog/trends/industry-wake-up-call-the-future-of-web-accessibility
We must acknowledge: web accessibility is a two-way street between business owners and people with disabilities.
Have we stopped for a second to consider business owners’ needs? Their wants? Their day-to-day operations? Their vendors? Their projects? Their expenses? Their priorities? Their challenges? If we want to achieve an accessible Internet we must consider what business owners are willing to do, what’s realistic for them, and what they actually need. Business owner’s nature is to care mostly about their revenue, their employees, and providing for their families. This is the nature of humans and humans run businesses.
They frame access as too expensive and too complicated: designers haven't got it right yet, so let's sell them a one-size-fits-all kit and call it done.
I’m still dubious.
ADA design guidelines are now part of US building codes -- building inspectors have become the ADA police when it comes to the built environment.
I wish the web had building codes.
ETA: updated Gardner's name and pronouns.
The Access Board has this to say about itself:
The U.S. Access Board is a federal agency that promotes equality for people with disabilities through leadership in inclusive design and the development of accessibility guidelines and standards.
Starting in March of next year, they’ll be holding ZOOM hearings re: autonomous vehicles and disabled people.
If you’d like to chime in with your thoughts, sign up here:
https://www.access-board.gov/av/
My thoughts:
AV pizza robots have already blocked curb ramps.
AV navigation depends on a deep understanding of the typical streetscape. But "typical" is a notion, not a reality. Every streetscape has atypical elements. For 50 years, I’ve observed the corner of Park and University Avenue. When UW-Madison is in session, the typical behavior is chaotic.
Color me doubtful and dubious. What problem are AVs solving?
From "An Unquiet Mind," s.e. smith's excellent monthly column at Catapult.co which explores disability identity and its interaction with the world at large.
“This was fine for someone else,” someone frustrated at being asked to accommodate me says, as though I am not an expert on my own self, as though all disabled people have the same needs. Why isn’t this thing that someone who isn’t you found perfectly acceptable enough? We spent all this money on it. As though being disabled does not in itself confer a literal body of knowledge, an expertise, a skill, an awareness of precisely what I need—because I have spent a lifetime fighting for it. I have a mastery of myself, a master’s degree in myself, yet I am followed, everywhere, by reminders that myself is too much. https://catapult.co/stories/what-if-accessibility-was-also-inclusive-column-unquiet-mind-s-e-smith
I adore s.e. smith’s viewpoint and way with words! Two other essays introduced me to myself.
OMG! It’s not just me who finds death sex so highly charged.
There is a thing that happens with those adjacent to death that many people seem to be afraid to speak of, perhaps because it feels startling and shameful when it happens to them for the first time. Perhaps because no one speaks of it, they assume they are alone in this, perverse, broken. But those of us in the know are well aware that funerals—memorials, celebrations of life, transition ceremonies, Passages (always with a capital P)—are absolutely the best places for hooking up.
https://catapult.co/stories/the-small-beauty-of-funeral-sex-essay-s-e-smith
s.e. smith nails the concept of "debility," something I struggled to understand last year at the SDS conference. When impairment is the result of trauma — whether that’s state or personal violence, especially due to marginalized status — the social model of disability isn’t enough.
Talking about how environmental disparities can contribute to disability becomes complicated as a disabled person who is proud and confident in my identity.
https://catapult.co/stories/when-disability-is-a-toxic-legacy-se-smith
I met s.e. smith through FWD: Feminists With Disabilities, an excellent group blog that’s further proof that longevity is not equal to value. Later I had the good fortune to meet s.e. in person. I’ve always admired smith’s ways with words, and I was delighted but not surprised to learn that three of smith’s monthly columns at Catapult won a 2020 US National Magazine Award.
Explore s.e. smith’s stuff at https://www.realsesmith.com/
I love Barry Deutsch (aka Ampersand)’s cartoon style: ligne claire with bodies that look real, including many fat folks like him. Most recently is his excellent 6-panel cartoon on the endless theme of non-disabled people telling us "I’d rather be dead than live your life."
https://amptoons.com/blog/?p=25717
Images with full description as well as DVD commentary on how he came to create it.
Since August 2016, the NYTimes has published a Disability op-ed at least monthly.§ The vast majority of contributors bring a social justice perspective on living with impairment in a disabling society.
The NY Times’ Sunday Magazine this week is an all-disability issue, celebrating the ADA’s 30th anniversary. Thanks to yourlibrarian for letting me know they’ve been making a newspaper-wide push for accessibility, including producing braille editions of the Sunday special. (I was pleased to discover that they’ve been captioning all their videos for the last few years.)
One of the joys of working on WisCon access was deploying blue painter’s tape to create a reality that worked for all of us. Blue tape marks wheelchair parking spaces in program rooms, front row seating for those who need it, and keep-clear aisles to improve traffic flow.
My favorite podcast hosts an article on painter’s tape creating physical distancing in public spaces
Absent context, images from the Tape_Measures feed on Instagram could look like a series of art interventions. In light of a global disease outbreak, though, they are clearly signs of the times showcasing how a low-budget tool can help reinforce social distancing practices.
New Mobility magazine focuses on wheelchair users, particularly power. I published an article there in 1999! Now published by the United Spinal Association It’s free, it’s got lots of detailed information, and stories from wheelers around the world. (Sadly not a lot of service-journalism on wheelchair manufacturers. They would be the #1 advertisers, of course.)
This article explores the fundamental differences between the very heavy deep-cycle marine batteries in traditional powerchairs, and the much lighter laptop-like lithium batteries powering the Whill CI, SmartDrive, and the new under-60 pound folding personal mobility devices.
[gear hacker] Mackay estimates he gets 30 miles on one charge, which is about the same distance he expects from his supplemental 24-volt, 75-amp-hour, lithium-ion marine battery — but the similarities stop there. The lithium-ion one weighs 70% less than its lead acid counterparts. Additionally, the two power sources deliver their charges very differently.
Lithium-ion batteries maintain max power output until they are depleted, whereas lead-acids put out less power as they near empty, resulting in a noticeable slowing of the chair. “In my experience, the lithium-ion battery gives me the same range as lead-acid. But because it puts out full power until it quits, it gives me an average of 1 mile per hour extra speed over a course of 20 miles,” says Mackay.
https://www.newmobility.com/2020/07/better-batteries-better-wheeling/
§ Marking a welcome 180° swerve away from the Times I grew up with — where the only disability coverage appeared in the heart-breaking inspo-porn-fest that was the NYTimes Neediest Cases.
Last month I attended the Grounding Movements in Disability Justice panel online. It was great. The video (with ASL interpreters and a PDF transcript) is now up! It’s free! Check it out!
https://www.dustinpgibson.com/offerings/groundingmovementsindj
I was particularly impressed by Azza Altiraifi, who explained an idea capri0mni introduced me to: that various oppressive systems use disability bigotry as the lever to enforce power over oppressed people. To label someone as "disabled" is to erase their right to have control over their own life. Azza explores how this intersects with anti-Black racism in the U.S. She’s part of the Disability Justice Initiative at the Center for American Progress, a progressive think-tank:
https://americanprogress.org/about/staff/altiraifi-azza/bio/
If I were on Twitter, I’d definitely follow Azza_Alt!
There’s another panel tomorrow night, Friday, May 8th at 7:00 PM EST, on Disability Justice & COVID-19. Join the livestream by signing up at bit.ly/djgrounding
I’m so grateful that this information is available and provided in accessible ways. This is the way forward with hope: follow the ideas and leadership of Black people, who have been surviving and thriving in a system set against them for centuries.
Here’s Azza Altiraifi, copied from the transcript
( 660 words of wisdom )
I really loved Have Dog, Will Travel—Stephen Kuusisto ( 5 of 5 )
( excerpts )
45-minute audio of author interview with Charity Nebbe, Talk of Iowa public radio
Scores of guide-dog related posts from Kuusisto’s blog include early drafts of the book
Thanks to NPR, this project absolutely delivers on its concept. I guarantee that browsing four years of 40-item finalist galleries will provide a brain vacation.
NPR’s own caption provides an elegant example of image description:
This squirrel in Sweden better have some wishes in mind — and fast — with the wind blowing those dandelion seeds like that.
Geert Weggen/Comedy Wildlife Photo Awards 2019
( you’ll be glad you clicked )
Sadly, the other 100+ images aren’t described at the Comedy Wildlife site.
I was happy to read this revision of William Carlos William’s irresistibly remixable poem, "This is Just To Say,"
This is just to say
I have built
a massive wheelchair
in my lab
that can climb stairs
And which
You were probably
hoping
could be affordable or fit on a bus
Forgive me
the likes from abled people were delicious
so sweet
and so cold
Who rt'ed in here? (
The Girl with the Purple Cane
Liz Jackson elizejackson writes about design and disability with clear insight and an acid tongue which make me happy.
A Disability Dongle is a well intended elegant, yet useless solution to a problem we never knew we had. Disability Dongles are most often conceived of and created in design schools and at IDEO.
#disabilitydongle on Twitter generated lots of responses collated on Medium.
sesmith uses the disability dongle concept to critique the wrong-headed focus on cutting-edge assistive tech:
It’s not just impractical and unsafe. It’s also wildly expensive. Breakthrough technology can cost more than a midrange car and most insurers do not cover it. Insurers, including private companies and Medicare/Medicaid, make durable medical equipment (DME) coverage determinations on the basis of demonstrated need, and they are notoriously choosy.
Disabled people don’t need so many fancy new gadgets. We just need more ramps.
There’s many more megabytes of Liz Jackson worth perusing
Great reading today from three places.
On DW:
seperis makes me laugh really hard about living with bunnies
Bunnies can eat through anything. Even zip ties. Even dozens of zip ties. Even all the zip ties. That is how I ended up with baby bunnies in the first place. They can also jump under duress three feet at a run and two feet just because they're assholes. (One of my tiny psychopaths can do three and a half feet, catch himself halfway over the top of the play area, and shimmy over.) Rabbits also like access to small, comforting, dark spaces to hide and cuddle (each other, not me).
https://seperis.dreamwidth.org/1041231.html
further background on bunny ownership: https://web.archive.org/http://seperis.tumblr.com/post/166559117285/the-bunny-files
On Granta:
Jillian Weise is a poet, performance artist, prosthetic-wearing ass-kicker. She delivers the Donna Haraway smackdown I've been waiting 20 years for:
When I tell people I am a cyborg, they often ask if I have read Donna Haraway’s ‘A Cyborg Manifesto’. Of course I have read it. And I disagree with it. ( 286 wise words )
https://granta.com/common-cyborg/
I first encountered Jillian in her Tipsy Tullivan persona, as she excoriated AWP for their hostility to disabled writers:
https://www.youtube.com/channel/ucwfcyz-fipjq0u6v-fevomq/featured
To my delight, she was on one AWP 2016 panel, celebrating the 40th anniversary of her publisher BOA, reading several poems and a call to action/drinks. ( uncaptioned video )
On Captain Awkward
I subscribe to the DW ![[syndicated profile]](https://www.dreamwidth.org/img/silk/identity/feed.png){kind=small}
captainawkward_feed
Cap addresses “Tips for staying positive when your body hates you.” from a PhD student dealing with sudden liver cancer. Cap wisely turns to the wisdom of disabled people, and offers lots of excellent suggestions.
What if I told you that you don’t have to feel positive or stay positive or be positive. Stay alive. Positive can wait.
[... snip ...]
Fight the idea that being sick is something you’re inflicting on others. You say: “I feel like I’m a drain on everyone around me and I can’t even contribute academically anymore.” This ableist framing is hurting you and other people.
Your worth is not based on how much money you earn, it is not based on how much research or scholarship you do.
I'm excited about this because many of the contributors are publishing their ideas on social media I'm avoiding due to my news fast.
Alice Wong direwolf
announces
I am proud to publish a new anthology available today Resistance and Hope: Essays by Disabled People
Your first chair is a learning experience.
( oh the things you will learn )
Start with a used chair.
( ...although determining its price will be challenging )
Don’t use insurance to buy your first chair.
( save insurance co reimbursement for the most expensive item )
Connect with Chair Users for hands-on experience
( Community service agencies, sports groups, possible rentals )
Places to Buy Used
( the internet is our friend )
More Reading & Reviews
For those of us who can’t climb the stairs, there’s a very tiny lift. The bus company requires 24 hours notice if I want to ride, because wheelchair users never have family emergencies. In general, I bought my ticket six weeks in advance. But based on six trips’ experience, the driver is always surprised to see me at the curb. ( the details of the boarding procedure, in case you ever ride )
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