jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (CKR fuck no!)
Probably news to nobody reading here, but it was such stunning evidence of greed in the hospital industry I just had to memorialize it.

This is from 17 May 2013 NYTimes article on the East Coast hospitals with the highest billing and payment. There's such a disconnect between what's charged and what's customarily paid that one must account for both. The users who pay the most are the uninsured; Medicare pays the least, and most insurance companies negotiate something in-between. Bayonne Medical Should be Bayonne Financial )
This is like buying a towing company, distributing your equipment to all roads in town, and then digging ditches across the road to guarantee business. As [personal profile] laceblade would undoubtedly say, This shit is wrong!

ETA to fix erroneous time travel
jesse_the_k: Cartoon of white male drowning in storm, right hand reaching out desperately, with text "Someone tweeted" (death by tweet)
ETA: Cut. Sorry about spamming your droll. :(

Let me offer you a link paté -- I've actually read all these stories, and wanted to share their greatness with you:

Link Paté )
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).
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: Cartoon ruler says "You rock" to a cartoon stone who says "you rule!" (junk3)
I'm posting this before the polls close so that the results of the election don't contaminate my gratification with the grass-roots level of the election process.

My day was really upbeat. Where I worked in the AM, I insisted we test the MarkSense (pictured in my previous) Accessible Ballot Marking Device. As the trainer had feared, it didn’t operate. Our chief contacted someone from the City Clerk’s office, who tapped it, thumped it, and sent some test ballots through a few times and it worked (although glacially slowly). At that point I gave an impromptu training to all the poll workers: here’s why we have a machine, it can substitute for the eye to hand system or the brain to hand system. Here are the sort of things the machine can enable. If someone wants to use the machine, don’t be a gatekeeper. My fellow poll workers seemed eager to know more!

When I finished my shift I went back to my home to cast my own ballot, and used the MarkSense there. It operated fine; the design and function of the large print output, however, is abysmal. It comes in one large print size, around 18 points. Although it’s a full color display, its warnings are shown with black & white flashing, so rapid as to induce migraine (or perhaps a seizure, that was some nasty brightness). So I closed my eyes and used the audio interface.

No access problems at either polling place (although the student ward where I worked has a very high level of ambient sound, which I would never tolerate for more than a couple hours).
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (volunteer)
There are many things we can do to improve everyone's lives. Voting is not the only thing, but it sure is hell is easy to do. Many have given their health, their peace of mind, and their lives for the right to exercise the franchise. If you're a, head on down to the polls in your municipality this coming Tuesday. And while you're there, you might be wondering, "Gee, just how do people with disabilities vote?" As it happens, I know a little about this. And this time, dear readers, I've put it behind a cut. )
jesse_the_k: Two bookcases stuffed full (with books on top) leaning into each other (books)
Barb Johnson's fiction debut is a series of linked stories set in early 21stC New Orleans. More of This World or Maybe Another tells the neighborhood stories from a canal town and how these school kids reconnect as neighbors in Mid-City New Orleans. (It's available in paper and as an ebook from Kobo, an ePUB only bookstore.) it's delicious and challenging and thrilling. )
jesse_the_k: Ultra modern white fabric interlaced to create strong weave (interdependence)
[personal profile] kestrell introduced me to "exo-cortex," a handy term to cover any external device that augments our sometimes-iffy human brain function. The initial exo-cortex was probably the sand-clock. Pen and paper is generally reliable, as long as one doesn't leave them somewhere. (Yesterday I lost track of both my keys and my debit card. Got 'em both back.) More recently, I've used Palm devices (in particular, my late lamented AlphaSmart DANA) and now an iPod touch and cellphone.

I just stumbled on The Quantified Self website. I can't describe it in a sentence: that link is a mittload of web- and phone-enabled tools to track one's health and well-being. These are the sort of tools I love to use, but hate to evaluate: short-term memory loss means I need exactly the sort of tool I'm testing to remember whether it was effective.

One of the hosts is a BNF in the dot-com world: Kevin Kelly, who helped start the pioneer online comm the Well, thence to Wired and hence here. He's an alpha alpha geek. The other is Gary Wolf, of whom I know nothing.

Self-efficacy is a term which keeps popping up on the site. As Wolf writes:
 begin quote Self-efficacy is different than self-confidence or self-esteem. It is not a personality trait, or a set of general beliefs about oneself. Rather, it is a subjective expectation of how likely you are to succeed at some specified goal. quote ends 

It seems the Quantified Self is about how to increase one's self-efficacy, and therefore, one's quality of life. Many of the articles are quite meta: people addressing the "how do we monetize personal health informatics?" question. But (as Tara Calishain's weekly newsletter used to remind me) worth a look.

Edited because I used "Qualified" instead of "Quantified" in the title, which is a pretty dorky error, yes?
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Calm the fire)
Just finished a fabulous book I recommend to, well, everyone.

Mistakes Were Made (but not by me)
Carol Tavris & Elliot Aronson

It's a highly readable tour of psych research on cognitive dissonance and how we justify error. Using examples from marriages and genocides, therapy, medicine, criminal justice and the law, it convincingly demonstrates the ubiquity of our reluctance to acknowledge our errors. I came away recognizing the human tendency to shifting a focus from what I did to what I intended. This move comforts and soothes the pain of cognitive dissonance; instead of facing error, it permits us to burrow into self-justification. This insight underlines the efficacy of "criticize the act, not the actor," since the latter would most likely stir up defensiveness.

When the authors apply their analysis to the broader world, it's useful and horrifying. This is how leaders justify torture and prosecutors justify imprisoning innocents. On the smallest scale, it's useful and mortifying: this is how we create grooves in our relationships, from which no amount of love and care can seemingly shift us.

Tavris & Aronson establish their thesis on many scientific studies (with footnotes! yay! footnotes!) and it's changed how I look at "guilt" and "blame." Highly recommended!
jesse_the_k: Panda doll wearing black eye mask, hands up in the spotlight, dropping money bag on floor  (bandit panda)
Effing Dykes, which has a few tasty, er um, tasteful bare breasts so may not be S for your W, is really really good today.

In our moment of direst need, the customer service person from the other side of the world channels truth direct to the cell phone in our hand!

Go! Read! Laugh!
jesse_the_k: Photo of baby wearing huge black glasses  (eyeglasses baby)
Just finished Joe Sacco's Palestine, graphic non-fiction about Intifada I. As with all his work, the narrative is honestly brutal and the drawings squirm with detail. I wholeheartedly recommend all his "comic books" (his preferred term). At Mother Jones, when he talks about his latest, Footnotes in Gaza, he explains why graphic non-fiction can sometimes tell a story better than words alone:
 begin quote  But one of the advantages of comics is that you're drawing frame after frame after frame, so almost in the background scenes you can create this atmosphere that's following the reader around, that doesn't necessarily relate to the foreground action but is somehow always present. For example, the way the buildings look—I can show that over and over again in the background, so in some ways I think you can really put the reader in that place, just with all these repeated images. If there's mud in the background, you can show that in every frame, so the mud is following the reader around. If you're a prose writer, really what you're doing is just mentioning it once, you're not going to keep mentioning it ever few lines—"and by the way, it was really muddy." So it's this constant reminder of what the place looks like. quote ends 
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (focused eyeball)
Season 2, Episode 1 of This American Life/TV is called "Escape." It's the best 30 minutes of documentary TV I've ever seen.

The first story is quite brief and, unusually for this show, told solely through pictures and first person narration. It's the surprising tale of urban cowboys: young people whose beautiful horses step proudly along Philadelphia sidewalks until they reach a huge park. There the horses and riders pound down the turf.

The second story introduces us to Mike Phillips, a 27-year-old blogger who has muscular dystrophy. At the time of filming, he can move his facial muscles and one thumb. He had a recent emergency tracheotomy which prevents him from speaking, so he uses a voice synthesizer program to speak.

Remarkably, this story is not about bravery, overcoming, or any other standard disability narrative. It's about families, independence, finding love and freedom via Craigslist. Mike's been able to stay out of a nursing home mainly because his mother has slept by his bedside for most of his life, ready to reconnect any of his life support systems when they fail. Partly thanks to talking about his life via email and in person with the This American Life documentary crew, he's hired his first personal care attendant; he hopes to use Medicaid waivers to eventually move out on his own.

Check Mike's blog, My Whole Expansive I Cannot See, for his thoughts on the process of making the documentary. A nice photo of Mike and his sweetie, Sara, is featured in this pretty good "human interest" piece from his hometown paper, the St Petersburg [FL] Times

This American Life's Escape episode is viewable for a limited (but unknown) time as a teaser on the U.S. Showtime network. (You have to sit through three minutes of commercials first; although the DVD is captioned, the online stream is not.) It's also available from iTunes and Blockbuster, but neither have captions. Grrr.
jesse_the_k: White woman with glasses laughing under large straw hat (JK 52 happy hat)
Great creative thinking at work over at cripchick's blog re: all the programmatic elements of accessiblity

I'm kvelling re [personal profile] coffeeandink's Ablism: Comment policy clarification. I think the ground is being made ready to address some of the deeper issues: interdependence, disability hierarchies, the tyranny of "normal."

MyGuy and I celebrated our 29th anniversary on Sunday night. I'm proud that we've made it so long together, and that we had the good sense to choose each other. There was some accessibility fail at the first restaurant, but I grit my teeth and got some good eats in the end.

Tapas at The Icon: tasty and not that expensive. Marinated Spanish White Anchovies, Marcona Almond Parsley Pesto, with Chocolate Espresso Crema Catalana. And room for popcorn at home later!
jesse_the_k: White woman with glasses laughing under large straw hat (JK 52 happy hat)
I think I'm not the only person who was expecting that LJ friends' content would show up on my DW reading page. It's a common enough misapprehension that there's a FAQ.

In brief: not yet, maybe later.

However, there is a workaround:

In brief: DW's reading page functions as an RSS headline reader. LJs create RSS feeds; set up your DW reading page to subscribe to those feeds. It's a three-click process, and you only need do it once.

Visiting your
Manage Your Circle page will show you the OpenID list which DW automagically creates when you import your accounts. Copy that link. Then visit the Feeds page to paste in the link. Add the four characters /rss to the end and click the "Add Feed" button.

ETA 23 JUN 09: correct grammar errors. I used to be able to write, really.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Flashy Bipolar means 2x fun)
...I've been obsessively contemplating and editing and researching, I must fling this out from Mandolin at Amptoons :
 begin quote It’s not okay to call a coward a pussy, or a bad thing gay, they argue, because there’s nothing bad about having a vagina or being homosexual. But there IS something bad about not being mobile! In fact, it’s no fun at all, just totally miserable. All other things held equal, isn’t it better to be not-lame than lame?

[... snip ...]

But even accepting that impairment to mobility is itself a sucky thing, MAYBE DISABLED PEOPLE DO NOT APPRECIATE BEING THE CULTURAL GO-TO FOR THINGS THAT SUCK. quote ends 

Yes yes yes yes yes! This post (as supplemented by commenter Lexie) succinctly explains why epithets-based-on-impairment* are not just rude, but actively disabling—they create the social conditions that make living with bodily difference difficult.

* E.G., "Iranian ruling classes are deaf to the chants of demonstrators."

ETA Hah! Mandolin's insight was nourished at WisCon!
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (expectant)
At the Rethinking Disabling Metaphor panel, [personal profile] sasha_feather proposed reclaiming "crutch" as a positive metaphor, like "tool" or "scaffold."

This poet, Britany Wilson, most surely does it with "Crutches."! Thanks, [ profile] sophy for telling me about it.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
DSQ, the Disability Studies Quarterly is an academic journal where academics, scholars, and independent thinkers have been poking at the meaning of disability, impairment, handicap, and other problematic labels for two decades. Both DSQ and its newer cousin, the Review of Disability Studies, are available free online. One reads DSQ in one's browser; RDS is downoadable as PDF or DOC files (an odd choice).

Since I now have two handheld reading devices, I'm always slurping up digital content. Which is where I encountered this, in Michael Davidson's review of Tobin Sieber's Disability Theory:
If a constituency is perceived to define rights claims for "special accommodation" around individual medical conditions, then that group could be said to be self-serving and narcissistic — hardly the best climate in which to mount a social movement.

Ah! This is why the Clint Eastwood-pattern "why are they asking for special rights?" objection stirs such a visceral reaction! I'm being called out as selfish, greedy and needy.

The reviewer further discusses how this book challenges the simple binary between the "medical model" and the "social model" of disability:
As I read (and teach) new scholarship on disability studies I see the same rhetorical sleights of hand being used to deconstruct ableist ideology without much critical reflection on the assumptions that underlie this endeavor. Siebers' book is a caution about how easily academic discourse produces the illness it seeks to cure. "We" all agree that the medicalization of the body has been harmful to persons with disabilities. "We" all agree that this model locates the "problem" in the impairment and not in the social and cultural barriers to full participation in social polity. "We" all agree that ideological state apparatuses reinscribe power on the body and render them docile. But as Siebers points out, the social model, by focusing on the social meanings of disability tends to dismiss the body as a kind of empty code of signifiers. That is small comfort for a person experiencing chronic pain or receiving dirty looks when boarding a bus or being denied access to a job, courtroom, or medical insurance.

Can't wait for Seiber's book to arrive!
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Oh really?)
Bill Shannon, aka Crutchmaster, is a four-legged dancer: a pair of legs plus two rounded-bottom canes. I'm not much for dance, but this guy adds a clueful, witty social analysis to his public performances and interactions with his audiences.

You may have seen his rad moves on YouTube.

In this Poptech presentation he lectures on the sociological details of how he perceives and is perceived as he dances in public: a 20-minutes disquisition on the social model of disability and the disabling gaze. (The video is Flash-based, but it starts automatically.)

His home sites, What is What and Virtual Provocateur, both use Flash, and are thus opaque to speech navigation.

As part of the UC-Berkeley-based Artists with Disabilities Oral History Project, there's a 70-page transcript from 2004 covering his early history, education, design & performance philosophies, and a ton of other interesting stuff.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (insane smarty)
Today the Americans with Disabilities Amendments Act goes into force. Sadly, the implementing regs have not yet been written, and as with most US Federal laws, the regulations are the details where the devil resides.

However, the purpose of legislative intent on the Amendments Act is clear: reverse the US Supreme Court's radical restriction of who was considered disabled under the law, and therefore who was protected under the ADA.

The Job Accommodation Network has the clearest description (I've seen) of how the Amendments Act language accomplishes this goal. Don your logical thinking beanie and read all about it on JAN's website.

Here's one example of how the changes in the Amendment Act mean better coverage for people with mental illness, cancer, diabetes, and epilepsy, where it's not so much the conditions themselves, as the implications of living with them, which require accommodation. Before the Amendments Act, the Supremes basically said, "If you can medicate the condition, then it's not a problem."

JAN's summary of the changes:
One thing to keep in mind regarding a request for reasonable accommodation is that the accommodation does not have to be tied to the substantially limited major life activity that established that the employee has a disability. For example, a person with cancer may establish that she has a disability because she is substantially limited in normal cell growth, which is listed as a major life activity under the “bodily functions” category in the Amendments Act. However, her accommodation request is related to fatigue and nausea resulting from her medical treatment. Once the employee establishes that she has a disability, then the employer must consider providing accommodations for any limitations she has as a result of her impairment, not just the limitation that established her disability.

Editorial aside: one of the reasons I love JAN's explanation is its "twelve days of Xmas" format. Very tasty for the slow learners among us.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (insane smarty)
Disability-rights advocates hate institutions. Their high walls and one-way doors nurture a culture of sexual, physical and mental abuse. The most important Supreme Court ruling so far on the Americans with Disabilities Act has been Olmstead v L.C., which held that sentencing people with disabilities to institutions when they could live in the community constituted discrimination.

Almost ten years later, states are still fighting to keep large institutions open (and advocates are still suing to switch spending from supporting institutions to supporting people living in the community). As always, civil rights laws never automatically mean discrimination is over: it only gives us the legal standing to sue.

Today my invaluable Inclusion Daily Express brought news of excellent political theater necessitated by the State of Texas' refusal to implement the Olmstead decision.

As the Inclusion Daily Express Archives show: Texas Houses Largest Number Of Americans Behind Institution Walls

Shouting 'Fifty-three murders on your watch!' and 'People are dying, shame on you!' the group of about 20 protesters interrupted the meeting. They waved signs and emptied a bag of 53 toy watches, painted red, on the floor near the panel. )

jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
I love Dmae Roberts's radio pieces. She explores vital, difficult issues and they're full of laughter. Listening to her voice helps me experience her insights more directly.
What are we but a collection of secrets? as we move through our lives, as we choose to reveal our lives, our stories, our very being to strangers—or not. 'How did your parents meet?'
Being visibly different in our racist society, she daily experiences rude questions from strangers. (Some of those same folks likewise see my power wheelchair as permission to say remarkably intrusive & thoughtless things.)

Her "Secret Asian Woman" explores the costs of passing. Her parents are White and Chinese, and she looks "White enough" to witness countless racist comments. She browses labels—"White," "half-Oriental," "Eurasian," "half-breed," "multiracial," "HAPA," "mixed,"—comparing their histories and fit. I laughed at her fellow-feeling with "Secret Agent Man," the 60s TV show: by being able to pass she inhabited the mysterious-infiltrator role into which many Asian women are cast.

more good stuff from Dmae Roberts )

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