jesse_the_k: Text reads: "I'm great in bed ... I can sleep for days" (sleep for days)
goofy context )
is the intro to the special issue of the journal, with actual science, but behind another paywall

I'm not making light of the underlying issue. I've been sick since 1988, I know the PACE trial is evil, it just amuses me what my unedited brain creates.
jesse_the_k: Callum Keith Rennie shouts "Fuck no!"  (Fuck no sez CKR!)

Until we arrived I didn't understand that Hurricane Katrina hit the Mississippi Gulf Coast even harder than New Orleans. before and after photos and videos )

jesse_the_k: sign reads "torture chamber unsuitable for wheelchair users" (even more access fail)
[Thanks to Carly Findlay, I've untangled who said what from yesterday's post; here's the revised version.)

"The Mighty" is a site funded by a US TV network executive. Real money is available to make an online magazine whose stated mission is Real People. Real Stories. We face disability, disease and mental illness together.

Mid-December, they published a mother's story about "Meltdown Bingo," where she described how her autistic son melts down. For a long time disabled writers have spoken up about the parental focus of the site. The "Bingo" article foregrounded the mom while invading the son's privacy. After a Twitter storm
The Mighty pulled the story
and invited disabled writers to participate. But The Mighty won't pay for prose, and the editors have changed submitted copy to swerve focus more to parents. Among the many angered by The Mighty, two Australian bloggers invested heavily in educating its editors. They joined the Mighty's private Facebook group for contributors and diplomatically discussed how previous stories were ableist, and how to improve. The Mighty's reaction was rapid and hostile. They banned the new writers from the Facebook group.
Refusing to Listen )
Phone call with Mighty staff has no impact )
jesse_the_k: Callum Keith Rennie shouts "Fuck no!"  (Fuck no sez CKR!)
ETA: my original post made a mess of quote attribution. Thanks to Carly Findlay for setting me right. Please see the next post:
for a revision.
jesse_the_k: Cartoon of white male drowning in storm, right hand reaching out desperately, with text "Someone tweeted" (death by tweet)
When a web page address (“URL”) appears as-is in the text, it’s a “bare link.”

For example, this URL:
takes you to my profile page.
two ways to make links )
In Dreamwidth and most other online writing spaces, a bare link automatically becomes clickable. I prefer bare links because
  • They’re easier to type, test, and proofread.

  • They simplify working around link rot.[2]
more details details details )
jesse_the_k: Lucy the ACD's butt & tail are all that's visible since her head is down a gopher hole (LUCY gopher hunter)
Seems there's a new meme in town called doge. If you've been seeing shiba inu dogs (plump foxes with attitude) adorned with semi-sensical language, you've seen it.

And this is why people get PhDs in linguistics:
begin quote The second factor that goes into doge is the general principle of internet language these days that the more overwhelmed with emotions you are, the less sensical your sentence structure gets, which I’ve described elsewhere as “stylized verbal incoherence mirroring emotional incoherence” and which leads us to expressions like “feels,” “I can’t even/I’ve lost the ability to can,” and “because reasons.” Contrast this with first-generation internet language, demonstrated by LOLcat or 1337speak, and in general characterized by abbreviations containing numbers and single letters, often in caps (C U L8R), smilies containing noses, and words containing deliberate misspellings. We’ve now moved on: broadly speaking, second-generation internet language plays with grammar instead of spelling. If you’re a doomsayer, the innovative syntax is one more thing to throw up your hands about, but compared to a decade or two ago, the spelling has gotten shockingly conventional. quote ends
Find out more, aimed at people without PhDs, from The Toast.

Another viewpoint, from The Week.

And when did we start having sites with two-word names? Is this a move to borrow newsprint's gravitas?

A good day

Jun. 26th, 2012 07:54 pm
jesse_the_k: ACD Lucy holds two blue racketballs in her mouth, side by side; captioned "I did it!" (LUCY absurd success surprise)
... today. Even though several disturbing things* happened, I was able to maintain an even keel. Even post about it. Hey ninety-eight point six so glad to have you back again.

Outstanding and easy-to-read ethical dialog re: file-sharing. )
I understand the power of peer pressure: before Megaupload died, I took advantage of illegal copies of otherwise unavailable video materials. That was a deep ethical collapse from my very strict "always pay!" stance nurtured as a niche software publisher.

* Can't talk about 'em yet.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
Ladies Home Journal has been around for a long time, and has long encouraged reader contributions. But this variation is remarkably different: I learned about it on the NYTimes' site:
begin quote The 128-year-old magazine, with an average paid circulation of 3.2 million, would be the first major mass-market magazine to draw on user-generated content for most of its pages. [... snip ...]

To find amateur writers, the magazine’s editors are looking for contributions across the Web, including on its own Web site, its Facebook page and, which is also owned by the Meredith Corporation and intended to gather stories from women on topics from parenting to beauty.
[... snip ...]
“It is reflective of real life,” Ms. Malloy said. “When you have a health issue or a sticky situation, you are likely to reach out to your community, your sister, your friend, your neighbor, your church.”

While most of the content will be user-generated, editors will continue to check facts in articles. Contributors will be paid the usual standard professional rates. And professional experts will also continue to provide advice, often alongside first-person accounts. quote ends focuses on interests which are not compelling to me, but its reputation and popularity among women can't be denied. It's also affordable, with an annual subscription of less than $6 bringing some of the web's writing explosion into the hands of women nationwide.
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK 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: Finding Nemo's Dory, the adventurous fish with a brain injury (dain bramage)
Three years ago, an excellent photog took a series of four photos:
He matched one half of the classical building on the back of US money with the actual building on a sunny DC day. The pix have gone viral a number of times, including this past week on Google+. Nothing makes me happier than sharing cool photos and giving props to the original creator, Brendan McKeon.

Google Plus -> thoughts.
  • integrates many useful bits into one home screen: sites, gmail, cloud photo mgmt
    "stream" flows like Twitter or Facebook but with fewer visual annoyances
    and many more.

  • Will probably increase the rates Google can charge for its ads.

  • Very vague about the Real Name vs Stable Psued vs Spam Factory issue.

  • last week I have demonstrated to myself (and unlucky others)
    that I reliably read social cues in email
    I attain 80% of my intentions in threaded discussions
    I don't even succeed fifty percent of the time for Twitter or chat

  • Last thing I need are more real time social media activities.

  • Will probably add G+ to the mothball repository with Facebook, LinkedIn no longer working
  • Twitter is seductive. Writers'-block issues destroyed by char limit; often offers illusion that I'm reading the minds of folks I like and admire.

  • Any thoughts?
    jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
    I'm glad WisCon introduced me to Haddayr Copley-Woods, who writes fiction and copy, mothers a couple of energetic kids, makes eloquent commentaries on Minn Public Radio, and bicycles through the winter in the Twin Cities. The last is made a little more unusual because she's got MS, and when walking lurches with crutches — she's fashioned a crutch holder from PVC pipe to tote her walking tools while she's biking. for stories! blog! more info!

    Haddyr's bike hack particularly delights me because it's functional and it blows up common assumptions. "How can a crutch user ride a two-wheel bicycle?" The answer illuminates why the USA disability rights movement has advocated "person first" language. Haddyr isn't a generic "crutch user";' she's specifically Haddyr, who uses crutches. She's got strong muscles in her legs and and she can balance a bike.

    So I was thrilled when I clicked the first number of Disability Studies Quarterly and read about a blind person who rides her bike all around the planet during daylight when she can see enough.

    Black Bike, White Cane: Nonstandard Deviations Of A Special Self
    Catherine Kudlick
    Department Of History
    University Of California, Davis

    begin quote Ever since I chose to use a white cane in selected situations, I've collided head-on with society's (undiagnosed) case of "cryptophobia" - my term for everyone's panic in the face of ambiguity. It might be the same angst many feel when they can't immediately determine someone's gender; as they search their data banks for clues - expected behaviors, dress, voice, gait, facial expression, body space - they overload if some detail doesn't come to the rescue in fixing the mysterious identity. quote ends

    Cryptophobia is an excellent term for the perplexity many people display around disability. I suspect cryptophobia is the source of much "disability policing," when people feel the need to make sure those people on disability benefits are not "scroungers," that this woman taking strong narcotics for chronic pain isn't "abusing"; that this person with a learning disability isn't getting an "unfair advantage" from longer time to finish tests.

    Do check out the rest of the Disability Studies Quarterlies. Each issue includes some creative non-fiction and fiction, book and other media reviews, and peer-reviewed articles. I can always understand at least one of the articles, and at least one leaves me scratch my ears, perplexed. All for free in HTML!
    jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
    Dave Hingsburger is a reliably educational blogger. Today's post about a TV show not only demonstrates excellent rhetoric, but offers some useful history on getting it wrong, and then facing the facts and doing it better.

    begin quote We planned a weekend where we could simply dive into the show and enjoy being entertained. And, we were. Because of the nature of the character we were a little worried that, in proof of his 'coolness', he would let slip with the 'r' word. But, no, episode after episode passed and we thought we could relax.

    Then in an episode written by Mr. Boxen, the character created and played by Mr. Hawco, tosses the word, of course as a pejorative, at another cast member. We actually paused the episode to calm ourselves. It was clear that the word was carefully chosen and purposefully used. Unlike with epithets used against other minorities, which are employed to demonstrate the negative nature of a character, this is a word (which is widely and openly reviled by the disability community) that is actually used to increase the 'coolness' factor of a character. The use of the word, in the manner it was used, shows a knowing willingness to hurt one group of people to curry favour and impress another. This kind of purposeful bigotry ought to be loudly condemned, however, it is this - my complaint - that will be attacked. Every legitimate call for the concept of respectful language to include disability concerns are ignored by the powers the be and attacked by supporters of the status quo. Those who wish the freedom to hate mask themselves as fighters for the freedom to speak. quote ends

    Then Dave details how Charles Dickens entertained complaints about his anti-Semitic framing of Fagin in Oliver Twist. Since his works were published in serials, he was able to make some changes mid-novel — and did so. I'm not holding Dickens up as a perfect exemplar — I don't think there are perfect humans — but he's certainly outside the "cruncy granola circle" I hear invoked when folks like us get mad about bigotry in literature and performance.
    jesse_the_k: Hands open print book with right side hollowed out to hole iPod (Alt format reader)
    I so wanted to love this book, and there were many excellent elements.

    The title is funny, transparent and true.

    The author is a freelance journalist, so naturally someone who's depended on the skills, talents, and kindness of librarians all over. She wants to repay the favor.

    It mentions the Zotero bibliographic add-on for Firefox, which looks like it does everything Refworks does, saves the data in standard format, and makes a ZIP archive for your local reference to boot.

    It school me about the heroic librarians in Connecticut who were willing to personally stand up for all of our rights under the PATRIOT act (and who were eventually joined by folks from NYC and the West, with fiscal support from the American Library Association and the ACLU). Not only were these librarians being all noble, the Justice Department was tying them up in a gag order explicitly so that this suppression of our rights could not be debated during the reauthorization of the PATRIOT Act.

    I did come away understanding that my starry-eyed admiration for librarians as guardians of justice, learning, and independent thinking is fundamentally correct. But actually I'd already got there.

    And now the rant: the writer's previous book about obituary-writing, The Dead Beat, was very funny. It was also, it seems, uniquely suited to her attention span and organization skills. Probably the killer item, however, was the audiobook presentation. The narrator, Hillary Huber, was toneless. Although a native English speaker, she mis-pronounced several common words. That wouldn't be a capital sin over the span of a 8-disk work, but one of them was "lie BREH ee".

    The author has what may be the world's most ugly and un-usable website. (As an Apple enthusiast, I hang my head in shame but that's what happens when someone uses iWeb, one of the very worst pieces of software Apple has ever come in contact with.)

    So instead of wasting time with the book, here's a blog roll of connected librarians
    jesse_the_k: Human in professorial suit but with head of Golden Retriever, labeled "Woof" (doctor dog to you)
    I loathe typing his name, but Jack Kevorkian is in the news again, because someone's turned his life into a docudrama. Follow the link to learn the many things that "everybody knows" about Kevorkian which just ain't true. The blogger, Stephen Drake, has been closely following Kevorkian's activities for two decades.
    jesse_the_k: Robot dog from old Doctor Who (k9 to the rescue)
    Even when I'm offline, it seems, I'm opening tabs!

    Prof Deb Reese accomplishes two useful things here at her American Indians in Childrens Literature blog: a. Speaking up on why the phrase "a few dead Indians" is problematic and b. Documenting info and rumor flow via Twitter, blogs, email, &c.

    Web-related book rave )

    Jesse Goes to the Ball Park )

    Ooops! Time's up! Back at you in a couple days.
    jesse_the_k: harbor seal's head with caption "seal of approval" (Approval)
    Just Netflixed a wonderful movie, The Beaches of Agnès by Agnès Varda. For every media fan wanting to exercise your brain, her work is delightful. She's been taking still pictures and movies in the heart of French avant garde since 1950. She is a pool shark with a camera, playing all the anglers. This movie is an introspective, dream-like, retrospective of her youth, her influences, her triumphs, her age (she's in her 80s), some name-dropping, an elegy to Jacques Demy, and three rainbow's worth of colors. Also, many beaches on many oceans. I was entranced.

    There's a YouTube trailer
    beneath the cut )
    jesse_the_k: White bowl of homemade chicken soup, hold the noodles (JK's chicken soup)
    My "internet budget" (no access during the day) has been enlightening. When the access turns off, I feel an enormous burden lifting from my shoulders.

    I find I'm posting *more* because I have a limited amount of time and therefore don't revise, reword, edit, rethink and (65% of the time) abandon my responses.

    I've so enjoyed the poems popping up all around my d-roll. Let me share my enthusiasm for Lucia Perillo.

    The Sweaters -- 1989

    Used to be, fellows would ask if you were married--
    now they just want to know what kind of diseases
    you've got. Mother, what did they teach you of the future
    in those nun-tended schoolrooms of the Sacred Heart?

    Nobody kept cars in the city. Maybe you'd snuggle
    when the subway went dark, or take walks
    down castle Hill Avenue, until it ran into the Sound--
    the place you called "The End": where, in late summer

    the weeds were rife with burrs, and tomatoes ripened
    behind the sheds of the Italians, beside their half-built
    skiffs. Out on the water,
    bare-legged boys balanced on the gunwales
    of those wooden boats, reeling in the silver-bellied fish
    that twitched and flickered while the evening dimmed to purple.

    What sweater did you wear to keep you from the chill window
    blowing down at The End, that evening you consented
    to marry Father? The plain white mohair, or the gray
    angora stitched with pearls around the collar?
    Or the black cashmere, scoop-necked
    and trimmed with golden braid, store in a box below the bed
    to keep it hidden from Grandma? Each one prized,
    like a husband, in those lean years during the war.

    I see him resting his face against whichever wool it was,
    a pearl or a cable or braid imprinting his cheek
    while the Sound washed in, crying _again, again_.

    Mother, we've abandoned all our treasured things, your sweaters
    long since fallen to the moths of bitter days. And what
    will I inherit to soften this hard skin, to make love tender?

    Resource: Whoever is running her website is stuck in 2000: frames and bitmapped menus. Here's a page of audio links, and she's got a mittful of books available as well.
    jesse_the_k: Due South's Ray Kowalski and Benton Fraser both rubbing their foreheads (dS F/K headache)
    No more denial from this corner: I have developed fangirl cataracts. While I was browsing this collection of 20 never-before seen LIFE photographs of Steve McQueen from 1963, all I could see in that lithe form was CKR playing RayK dreaming he's Steve McQueen.

    (link goes to totally undescribed AJAX-heavy photo gallery.)

    There is even, [personal profile] dira fans take note, a shot of battered hands!
    jesse_the_k: kitty pawing the surface of Atlantic phonograph record on turntable  (scratch this!)
    The song Bread & Roses was inspired by the IWW (Wobbly) organizing campaign in the Lawrence, Mass textile mills. The workers were almost all female (since the owners could pay them less) and mostly immigrants. My family history somehow intersects here: I heard fuzzy stories growing up about my Socialist Grandfather Knebel running away from the company police on the Lawrence train platform—I assumed he was in town making trouble.

    March 8th used to be one pivot point of my year.
    Read and hear all the details )

    about me

    jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
    Jesse the K

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