jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Beating heart of love GIF)
Thanks to a [personal profile] liv-triggered happy rabbit-hole I just read Marissa Lingen's fabulous post illuminating why most people find the experience of impairment so mystifying.


if you need convincing: an excerpt )
jesse_the_k: Female head inside a box, with words "Thinking inside the box" scrawled on it. (thinking inside the box)
I eagerly anticipate every new post by Mel Chau thanks to her glorious insights ) although half of them discuss pedagogic philosophy above my head. The other half include glorious insights into her intersectional experiences as Asian-American, engineer, deaf & Deaf, female, teacher. This essay addresses the high cognitive load lip-reading imposes as well as the utility of residual hearing. A taste:

In my case — and the case of my deaf friends who prefer to not use residual hearing when there’s another access option available — we’re patching across multiple languages/modalities on a time delay, and that triggers two competing thought streams. If you want to know what that feels like, try to fluently type a letter to one friend while speaking to another on a different topic. Physically, you can do it — your eyeballs and hands are on the written letter, your ears and mouth are in the spoken conversation — but your brain will struggle. Don’t switch back and forth between them (which is what most people will immediately start to do) — actually do both tasks in parallel. It’s very, very hard. In our case, one stream is lossy auditory English as the speaker utters something, and the other is clear written English or clear ASL visuals some seconds behind it. (Assuming your provider is good. Sometimes this data stream is … less clear and accurate than one might like.) Merging/reconciling the two streams is one heck of a mental load… and since we can shut off the lossy auditory English as “noise” rather than “signal,” sometimes we do.

"Oral deaf audio MacGyver: identifying speakers"


jesse_the_k: Swim fins which are also high heels. (shoes 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

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: Callum Keith Rennie shouts "Fuck no!"  (Fuck no sez CKR!)
The ongoing protests of police violence against African-Americans is making this systematic horror more visible.

Police violence is all too common when the "suspect" (i.e., human being under the gun) refuses to answer and/or obey police orders. Many impairments make it difficult or impossible to perceive or respond to police orders, in this case, ordering a quadriplegic to stand up.

Brutal behavior without death )

The Hayes lawsuit

A mainstream media report from the (Delaware) News Journal
jesse_the_k: Zoe from Firefly looks fierce with her sawed-off shotgun (Zoe's Gun)
AV Club writer Gwen Ihnat's excellent article describes her own experience as someone who's visually different thanks to vitiligo. For a long time, the white spots on her dark skin drew ridiculous questions from adults, as well as suggestions she not have children since they might also have this auto-immune disorder. But when she saw American's Top Model contestant Chantelle Winnie, who also has vitiligo, all up in her tv, it had a strong impact on what vitiligo meant.
begin quote
Why shouldn’t I get a manicure, even if it will draw attention to my multi-colored (not discolored) hands? Why should I try to cover myself with bad makeup when people with other unusual physicalities don’t have that option? What if rocking my vitiligo would help my children tackle any future challenges better than “fixing” it could?
end quote

The Article:

The TV Show:
jesse_the_k: Ultra modern white fabric interlaced to create strong weave (interdependence) is still reliably useful. The most recent advice responds to someone who's been treated for ADHD as an adult, and is getting skeptical, disbelieving responses from someone she thought was a good friend.:
begin quote When disclosing to someone who is generally a positive force in my life, I personally have found it helpful to translate initial “But I wouldn’t have guessed that you have _________” or “You don’t seem like someone with _________” or “You are much too young/smart/pretty/good at things to be _____________” reactions as:

“I am trying to hard to reconcile my mostly positive impression of you with the highly negative, stigmatized (perhaps scary) perception I have of people with __________. Since I am trying to resolve this cognitive dissonance in your favor, I’m going with wishful thinking and denial.”

Yep, many people react as if denying the possibility that your brain could work differently from other people’s is a compliment to you. Because that’s how scary/negative/skewed/narrow/ableist their imagination is about people who have (whatever you have).

Then you get the people who are immediate experts on your condition because of a thing they read one time, the people who want to immediately fix everything, the people who wring their hands and want you to comfort them about the issue that you are having, the diet and healthy lifestyle police who want to figure out how getting this was all your fault for not doing everything “correctly,” the blowhard who wants everyone to be so tough they don’t need medication…a rogues’ gallery of helpiness.

Once I can parse/translate their reaction as being about them and not really being about me at all, it doesn’t feel better, but it reminds me that I’m not the one making it weird by seeking health care for a health thing. quote ends

CA goes on to provide twenty-four ways to handle intrusive, boundary-pushing, stigma-painting inquiries. They'd work equally well for friends and family, and make very educational and gratifying reading.
jesse_the_k: harbor seal's head with caption "seal of approval" (Approval)
I've read almost all that British writer Alexander Masters has published, and I seek out his work. He writes from his daily experience, but is always ready to peel away his daily assumptions and received wisdom. books movies articles )Two books, the movie, scores of articles. Take a look the next time you see Alexander Masters' name.

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 56 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:

And of course when I think of people with disabilities I think about sex )
jesse_the_k: mirror reflection of 1/3 of my head, creating a central third eye, a heart shaped face, and a super-pucker mouth (JK 57 oh really?)
My WisCon37 was truly delightful. I sat on panels, I attended panels, I was a stand-up comic, of sorts, on a panel. I visited with old friends, I met with con-only friends, I had a wonderful time talking with folks i hope will be friends next time.

I am drafting a panel report -- in my sleep.

I am so sleepy that I have been dreaming that I'm sleeping. (If only I got twice the rest from a dreamed-of-sleep sleep.)

Be right back, after this nap.
jesse_the_k: Hands open print book with right side hollowed out to hole iPod (Alt format reader)
Recently Finished: Two winning science-y books

Too Big To Know by David Weinberger. For a very long time, human knowledge was what fit on paper (no mention of oral cultures). Now the Net removes the requirements of publishing contracts, printing limits, salability. Everybody can be a publisher. And so, there's a whole lot of knowledge; so much that it's ... Too Big To Know.

Author brings lots of Internet, journalism, and librarian experience to the question of, "How will we know what to learn?" Challenging, intriguing, probably 30 ways wrong but very enjoyable.

Delusions of Gender by Cornelia Fine. Stacks up the various studies that claim that male and female differences are hardwired into the human organism, and demolishes them one-by-one. Author is funny, provides tons of footnoted details, doesn't mention some statistical issues that even statistically-illiterate me think relevant. Nothing so delicious as the deconstruction of Simon Baron-Cohen.

Currently Reading: Many megabytes of Sherlock BBC fanfic

I prefer my works not-in-progress, and several of my fave authors have finished up novel-length narratives. In particular:

The Art of Seduction by [ profile] flawedamythyst
Sherlock maintains his intense focus on data and experiments, but the field is human sexual congress. Hilarious with tender and sad bits. Also lots and lots and lots and lots of sex, which ends with Sherlock emitting yet another "Dull!" and swirling away.

Not What Is Said But What Is Whispered by [ profile] sirona
It's the good old "characters read the fanfic" trope, but this one didn't squick. Instead I laughed and giggled at the (can you still call it 'epistolary' if it's) email.

Next Up: Many more megabytes of Sherlock BBC fanfic

And when I'm not on a bus, I have Consider the Fork by Bee Wilson (audio read by Alison Larkin) which claims to consider kitchen tools and gadgets from the beginning of history and their impacts on how we cook. Perhaps the mystery of the vegetable slicer will be unveiled?

And when I want to hold an actual book in my hand, I've got How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. I'm not really at all Buddhist (or even JewBu), but I want to read this book in honor of my acupuncturist Kate Behrens. She surely is a Buddhist, and has improved my life greatly. Easier first step than joining a meditation community.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
This is the funniest NYTimes article I've read in years. I doubt the author intended me to be laughing so hard, but....
begin quote  Men flirted and showed off their muscles through tight-fitting tank tops. Women with no shoes gyrated next to men with no shirts. A D.J. played deep beats. Shachar Keizman, 24, climbed atop an armrest and peeled off his shirt to reveal a chiseled torso. People screamed and stuck dollar bills in his shorts. ¶ Then the lights went down, and Channing Tatum got naked. quote ends
Yes, the Times reporter is amazed to find that the new movie Magic Mike, featuring male strippers, is drawing audiences of gay men! How surprising!

Also of interest & from the NY Times, runner & dak amputee Oscar Pistorius has qualified for the South African Olympic Team.
begin quote His presence on the most prominent stage in sports will no doubt rekindle an international debate over whether his J-shaped, carbon-fiber prosthetic blades give him an unfair advantage. quote ends

Direct from me:

  • New pains. Feh. One thing that's comforting about chronic pain is I become well-acquainted. This new stuff I don't understand yet. Could it be something worth bringing to medical attention? or is it just another meaningless annoyance? Also, keeps surprising me. There again? again? again? Grrr.

  • Finished Code Name Verity, a gripping YA novel set in World War II England and Occupied France. Two "girls" — one very posh and one very working-class — meet shuttling airplanes for the RAF aviators. Their epic friendship takes them across enemy lines, class lines, and moral lines. Author Elizabeth Wein threw an excellent virtual launch party at her, with links to the historical characters that sparked her imaginative yet usefully accurate book. I was particularly struck by her descriptions of handling flying when things go terribly wrong. Wein herself is a pilot. I wished I'd known before I began that there is significant violence in the framing story: one of our two heroines is tortured by the Nazis. Wein's afterword helped me understand that she included these horrors to ratchet up the memorability — Never forget, and never again.
  • jesse_the_k: mirror reflection of 1/3 of my head, creating a central third eye, a heart shaped face, and a super-pucker mouth (JK 57 oh really?)
    My Mac's back, but I'm not taking it to the con — continue contact via Twitter.

    I know I've a remarkably large number of medievalistson my Droll, who might be interested in this exploration of "Diversity in Medievalism."

    The very best possible eclipse plus Golden Gate bridge photo

    While backstroking with moxie in the pool this AM I bonked my head on the concrete wall. All I know from concussion I learned from fanfic. I did check Dr Google and know to expect headache, visual problems, and sleepiness.

    If my pupils dilate asymmetrically or I start babbling more than usual, do let me know

    I'm molto excited about WisCon, and this one in particular.
    jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
    s.e.smith blogs daily, deploying wisdom, humor, and a broad-spectrum passion for social justice.

    Yesterday's post shone particularly brightly, addressing the damage that lay diagnosis of mental illness causes for those of us with mental illness as well as those without it:

    Armchair Diagnosis: Just Don't
    begin quote  People sometimes seem to think they are doing someone a favour with armchair diagnosis. They’re explaining that a behaviour isn’t someone’s ‘fault’ by attributing it to mental illness. In fact, they do neither the person they’re diagnosing, nor the mentally ill community in general, a favour. By insisting that behaviours that are weird, or out of alignment with how someone usually acts, or distasteful are the result of mental illness, people are engaging in distancing. They’re saying that no ‘normal’ person could do that sort of thing. It’s impossible, for example, for someone who has been having a bad day of work to snap at someone and collapse in tears. Obviously she’s paranoid and has schizophrenia. quote ends

    Here, I promise that adding this feed to your D-roll will improve your life:

    [syndicated profile] thisaintliving_feed
    jesse_the_k: The words "I told my therapist about you" in Helvetica Bold (told my therapist about you)
    I've spent the past couple weeks playing around on Twitter. It's short enough (max message length is 140 characters) that it slides under my writers' block. However, it updates continuously, and therefore grabs my attention many, many times a day. Conclusion: abandon Twitter. (already done.)

    My subscription list has approximately 220 people and 40 communities. That would be why it takes four or five hours to read through my mobile-optimized Dreamwidthroll. The connections I've made and the kindnesses you've offered are wonderful, but it requires so much energy that I don't have time to center myself.

    So I'm going to slice my sub list way, way back. If yours is among them, please don't take it personally. It's really about my person and what she is and isn't capable of.
    jesse_the_k: Due South's Ray Kowalski and Benton Fraser both rubbing their foreheads (dS F/K headache)
    All y'all know how much I love assistive technology, but as the NYTimes reports in this article, "Remedy Is Elusive as Metallic Hips Fail at a Fast Rate". Seems that metal-on-metal replacement hip joints (whether complete or "resurfacing"), can fail catastrophically and silently. The story details the intense research patients undertook to locate doctors (perhaps not coincidentally, non-US) to pay attention to what was happening to their mobility. The moral I took away was that when a prosthesis or implant fails, it may degrade into bits our mighty immune systems decides to fight.

    So my thyroid values are all low yet my cortisol is high, which the endocrinologist says is not unknown, but not typical neither. So I'm going to be spitting in to cotton balls for a couple nights to assess my cortisol over time. Flying spaghetti monster only knows what is next. I no longer feel guilty for sleeping all the time (hey! it's a hormonal thing!) but it does use up a lot of hours in a day.
    jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Beating heart of love GIF)
    A lovely Labor Day meditation on personal care workers, supported employment assistants, and the millions of others whose labor makes the lives of people with disabilities possible:

    I was moved by his recognition that unpaid labor is still labor. MyGuy has been my backup and foundation and ceiling. When we met we were all about equality. MyGuy taught me that equality is an ideal that's premature when we are born to an oppressive society: I learned to value equity instead. At the time I don't think either of us realized how much work would land on his shoulders. I am so grateful he bears the burdens without rancor and with love.
    jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK 56 powertool)
    Just found out about a really cool movie in production, called FIXED. Made by a disabled filmmaker, the movie explores the meaning of assistive technology in our society. Must disabled people accept AT to become "normal"? What happens when the AT makes us superior? Do normate values inform the funding priorities for AT? Why should we research brain implants when people don't have access to health care?

    As the filmmaker, Regan Brashear, puts it:
    begin quote  What's the film about? What does “disabled” mean when a man with no legs can run faster than many Olympic sprinters? With prenatal screening able to predict hundreds of probable conditions, who should determine what kind of people get to be born? If you could augment your body’s abilities in any way imaginable, what would you do and why? From pre-implantation genetic diagnosis to neural implants and bionic limbs, researchers around the world are hard at work developing a myriad of technologies to fix or enhance the human body, but what does it mean to design “better humans” and do we want to? FIXED follows three remarkable people: Gregor Wolbring, John Hockenberry, and Patty Berne – a scientist, a journalist and a community organizer – each of whom has a personal story of disability and a passionate engagement in the debates around emerging human enhancement technologies.  quote ends

    She's got lots more details and testimonials on her Kickstarter page

    I could tell she's One of Us by the donor categories, which include THE BORG SPECIAL; THE BIONIC WOMAN; and THE PROFESSOR XAVIER NEURAL ENHANCEMENT.
    jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (endless)
    Beginning to return to normal post-Con energy levels. I think I'm over that snotty cold, but my thyroid values are sinking mysteriously: after five years I'm going to an endocrinologist next month. It might be something fixable! Wouldn't that be a change?

    Liz Henry is a force of nature. Liz Henry is a force of nature. )

    Planned net outage starting this Friday for a couple weeks. Which might be sad, but isn't because lunch in Chicago on Friday with [personal profile] meloukhia, [personal profile] were_duck, and [personal profile] sasha_feather. I feel so metropolitan.

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