Tuesday, September 30, 2008

Hey, there are lights at the old Bérubé place!

It's not haunted, eager trick-or-treaters, it's definitely the Michael Bérubé, because nobody else, but nobody, writes long posts this well on disability studies, academic conferences, and family trips all rolled into one. (It's also up at Crooked Timber, if you want to read through a different comments stream.) Today he explains, "My friends, I suspended my blog retirement so that I could see us through this crisis." I say that's a change we need.

Friday, September 26, 2008

Coming November 1 to DS,TU: The History Carnival

[Visual description: Logo featuring the words "The History Carnival" on a tan rectangle, with ripping and aging effects around the border.]

Still in the mood for more carnival? Upon kind invitation from Sharon Howard, I've agreed to host History Carnival #70 here on November 1. Given the date, I'm expecting a Halloween-candy-fueled, Dia-de-los-Muertos-colorful, election-anxious event. It would be lovely to have a block of contributions on disability history topics for the occasion, so Disability Blog Carnival regulars, consider this a bonus opportunity.

About nominations: The "simple nomination form" doesn't seem to have a non-visual code to type, so to improve accessibility, you may also email me with your links for consideration, or the carnival's coordinator (at sharon@earlymodernweb.org.uk ) with "History Carnival" in the subject line. For the History Carnival, it's also possible to enter a link by attaching the del.ici.ous tag "historycarnival" to your post. Finally, you can just leave a note in the comments thread for this message, I'll be checking.

UPDATE 9/27: I heard from Sharon Howard this morning that, in response to the accessibility concerns, she's activated a RECAPTCHA security feature instead. So the simple nomination form should be more useful to more folks now. But if it still doesn't work for you, the other options remain.

Wednesday, September 24, 2008

Disability Blog Carnival #46: Falling

Welcome to the 46th edition of the Disability Blog Carnival! The theme this time is "Falling," and you'll see that bloggers took that one-word prompt in a variety of directions....

But first, we really need to celebrate with Lost Clown and others, on the US Senate's passage of the ADA Amendments Act of 2008, just two weeks ago. And while we're at it, the recent ADAPT actions in Washington DC in support of the Community Choice Act are also newsworthy--but you wouldn't know it from the mainstream media, notes The Divine Miss Jimmi, who identifies a reason for the dearth of coverage: "When people with disabilities take to the streets and say that the system is broken, we don't want to live in your shitty institutions because the sight of us bothers you or that we want our rights along with choices that the mainstream public takes advantage of everyday--suddenly, we're not so cute and inspirational." CripChick pointed to that post, and added a celebratory blogroll-in-verse-form to mark the occasion.

And now, pack your parachutes, it's time for a whole lot of free FALLING....

Not FALLING down (literally!)
But what if he falls? At some point, every parent has to let go and let the child take a risk: Miryam leads us through the process of "letting him choose." In this case, her son climbs a ladder, and descends all aglow. Random Madness in Torrance isn't usually a disability blog (I read it because it's local to me), but a recent post involved shopping for a rolling walker--and finding some cool Scandinavian designs that should prevent further falls for a loved one. Occupational therapist Grace Young has some helpful tips for improving the odds of avoiding falls, trips, slips, and stumbles, especially important for people who may have higher risk for injury. And Ruth's caution is for the able-bodied students she sees daily: texting and listening to your iPod while walking is bound to result in collisions and nasty spills.

FALLING out of the workforce

Henk ter Heide explains his personal dilemma of finding suitable work in the Netherlands--but the contradictions and gaps in opportunity he's facing will sound very familiar to many disabled people, wherever they live; and meanwhile, Terri is concerned about her daughter falling into the gap between education and employment.

FALLING into the budget gap
You may or may not have heard that California was without a current budget for more than two months, ending this week--and in that time, some agencies and programs that serve people with disabilities stopped getting funded. Even when they're getting paid, the rate is so low that care needs go unmet (and that's definitely not just a California situation). Sally at Maggie World is hiring, but it's complicated, and agencies can't help like they used to. "Seems to me that home care for the most vulnerable and medically involved children should be given a little higher priority. It should be less of a game for the patients, the nurses and the families," she concludes. In other budget news, Coral and Opal notes that tighter transportation funds in some school districts have kids on buses for two or three hours each direction--a hazardous and traumatizing situation for the kids, and an infuriating one for their families and teachers. (And guess which group of kids is more likely to ride the bus, and for longer distances? Yup, kids in special education programs.)

FALLING in love
Do you control who you fall in love with? Lexie at Beyond Acquara considers (at wonderful length) this question, in the context of abled-disabled relationships, saying "although I have dated non-disabled people, I kept bringing home disabled people. My mother would just shake her head in disappointment." Cherylberyl decides that the quickest way to fall in love afresh with her own look is to get a good haircut.

FALLING into opportunities
Dave Hingsberger seems to fall into teaching moments a lot--or maybe they fall into him? Either way, it's good to have "a little chat" sometimes.

FALLING into the trap of cliches
Ah, an ongoing theme of the Disability Blog Carnival--bloggers unpacking the assumptions of politicians and media commentators. At Barriers, Bridges, and Books, Terri demands a rewrite from Katie Couric, after a grim, cliche-ridden and truly dated introduction to a story about Down syndrome. Kristina Chew confesses to being a Former Warrior Mom, against the media's apparent preference for the screaming-tigress-mom narrative. Gregor Wohlbring and Shelley Tremain at What Sorts of People explore the medicalization trap Joe Biden fell into recently, on the subject of stem cell research. Notes Shelley in comments, we should pay attention whenever politicians speak from
the pervasive medicalized misconception of disability, according to which ‘dealing with disability’ means prevention, elimination, and cure, and furthermore uncritically package this medicalized approach as what disabled people want, as what it means to support us.
Still in the same minefield, congressman Charles Rangel fell into one language trap (using "disabled" as a synonym for unintelligent, inexperienced, or misguided)... then another (setting up "disabled" and "healthy" as opposites)...and then the McCain campaign, in criticizing Rangel, landed in yet another (yes, they used the word "affliction" to describe Down syndrome). Wheelchair Dancer talks them all through the bottom line: "disabled is not a metaphor that you can use to describe uniformed, unrealistic, and, to my mind, frankly stupid perspectives on the world. Disabled is a reality that many of us live." Amen!

FALLING outside categories
When discussing emergency funds, Abby at I pick up pennies realized that "what most people consider 'worst-case scenario' is what Tim and I consider 'life.'" It's a little shocking to realize your life is the outcome many people fear most, she notes, and then turns that shock into a series of clear-eyed reminders about control and safety and survival. At Screw Bronze, Elizabeth is having dreams about slipping out of the human category--and frustrating real-life encounters with librarians who treat her like she's definitely not in the "take seriously" category. (I almost pity the librarians that discarded Accidents of Nature on Elizabeth McClung's watch--they have no idea who they're tussling with.... ;) )

FALLING for a scam
Karen is not falling for the lottery scam that's making the rounds (again, and again) via IM.

Autism Speaks is falling far short of real advocacy work, says Cody Boisclair at Standup UGA, pointing out the following analogies for readers unfamiliar with the issues:
Imagine, if you will, the sort of reaction the National Organization for Women would get if its leadership were made up entirely of men, or that the National Association for the Advancement of Colored People would get if it were made up of white folks. It’s an utterly absurd thought, isn’t it? How is it, then, that Autism Speaks can continue not to even have a token autistic on its board of directors or anywhere else in its leadership, much less an autistic member in any sort of significant role, to provide any sort of oversight?
Hot cocoa for everyone!
And a nice fall note to end on: Rob at Kintropy in Action observed the autumnal equinox with some cozy anticipations of hot chocolate and rainy day reading.

Next time on the Disability Blog Carnival
The next edition of the Carnival will appear at Day in Washington--regular readers there will not be surprised that the theme will be Policy. Well timed for the last month of the US presidential campaign, and the last week before the Canadian elections, among other fall events. Deadline for submissions 6 October, and edition #47 should post on 9 October. Submit posts in comments here or there, at the blogcarnival.com site, or just put "Disability Blog Carnival" in the text of your post, that usually works.

[Posting now, will add images and maybe more links later--off to school.--PLR]

Saturday, September 20, 2008

James Castle: His Life and Art

[Image description: an untitled James Castle work, made from paper, string, and soot, folded and tied to resemble a shirt front with square buttons; from the Museum of Modern Art website]

I got this Idaho Center for the Book press release (below) through SHARP-L, the listserv of the Society for the History of Authorship, Reading, and Publishing; links added. James Charles Castle was born on September 24 (or maybe 25) 1900 (or maybe 1899); either way, the date is coming up next week, so maybe observe the occasion by learning more about this twentieth-century artist. There is also a new DVD, "James Castle: Dream House," available from the Idaho Center for the Book, and a film documentary, "James Castle: Portrait of the Artist." A major Castle retrospective is due to open next month at the Philadelphia Museum of Art. (Amazon's got the exhibit catalog for pre-order.)


The second edition of "James Castle: His Life and Art," written by Boise State University professor Tom Trusky and first published in 2004, has been released by the Idaho Center for the Book.

"James Castle: His Life and Art" contains rare documents and photographs, exclusive interviews with Castle’s family, childhood friends and contemporary art and medical experts. The new edition features two new chapters as well as 200 black-and-white and color images and maps. The book has been revised and updated, including the book notes and bibliography.

[Image description: black-and-white photo James Castle in his work shed, wearing overalls and seated at a small table, with various papers pasted to the walls around him; photo found here]

The book has been called "the definitive critical biography of Castle," the native Idaho artist who died in Boise in 1977. Labeled for his entire life as deaf, mute, illiterate and mentally challenged, Castle is now thought to have been autistic. Born in 1899 in Garden Valley, he was the fifth of seven children.

He never learned to speak, had a limited ability to read and write and he seemingly refused to be taught to sign. His primary form of communication was the thousands of books, drawings and illustrations he produced during his lifetime. Houses, domestic scenes, family members and friends were endlessly rendered in what some have termed a primitive “folk art” style from crude tools and supplies — ink made from soot and saliva, pens fashioned from twigs or sticks and canvases scavenged from scrap paper, cardboard, books and the many catalogs that flowed through his parents’ general store and post office. Even when family, friends, curators and artists purchased paints and brushes for him, late in his career, he preferred to make his own tools.

Castle devoted himself to making art for more than 60 years. Although briefly “discovered” in the 1960s, he was largely unrecognized during his lifetime. Castle left behind more than 20,000 artworks.

“James Castle: His Life and Art” sold out of its first edition. It is published by the Idaho Center for the Book, housed at Boise State, and is available at the Boise State Bookstore and Amazon.com.

Media Contact: Julie Hahn, University Communications, (208) 426-5540, juliehahn@boisestate.edu

Thursday, September 11, 2008

Disability Blog Carnival #45 is up now!

Paula Apodaca has this edition up at E. is for Epilepsy, with the theme "the future." Go have a read--she even managed to work in the spammier submissions we get every round, about back health and marital bliss.

The next edition will be here, at Disability Studies, Temple U., first time in months I've hosted, just because it's been a while. The theme or prompt is "Falling." Because it's fall (in the Northern Hemisphere, anyway), and because I'm hoping you can spin the word in enough different directions for a good collection of submissions (think falling in love, falling down, falling for a prank, falling out, falling away, falling forward, falling in the polls, falling out of favor, falling into something, falling free). This will be close to our second anniversary of the Disability Blog Carnival, so I also encourage reflections on what the carnival has been or done for you in the past two years. Submit posts all the usual ways: the blogcarnival.com form (warning: inaccessible CAPTCHA feature is still there), in comments here, or just put the phrase "disability blog carnival" in your post, I'll probably find it.

ETA: Oh yeah, dates. The next carnival edition will post on September 25--so deadline for submissions is September 22. Thanks to twxee for pointing out this omission!

Want to host an edition of the carnival in its third year? Hope you have a 2009 calendar handy! We're recruiting for January forward right now.

Wednesday, September 10, 2008

The Candidate's Disabled Son--in 1872

[Image description: photo portrait of Victoria Woodhull, in a lacy dark dress, head turned to the camera, torso in profile]

There have been quite a few presidential and vice-presidential candidates with children who would today be considered disabled--especially in times when many families included someone who had survived measles or high fevers or accidents of various disabling kinds. (Nineteenth-century American children grew up around open flames, sharp and grinding farm equipment, large animals, and no antibiotics, among other hazards.) Maybe because it was so common, impairment in a candidate's family wasn't generally much remarked upon in the 19th century, from what I can tell. Or maybe in the era before photo ops and newsreels and TV ads, the candidate's family just wasn't as visible during campaigns.

But when Victoria Woodhull (1838-1927) ran for president in 1872 as the candidate of the Equal Rights Party (with Frederick Douglass as her running mate), her lover Theodore Tilton included descriptions of Woodhull's teenaged son Byron when he wrote her campaign biography:
To add to her misery, she discovered that her child, begotten in drunkenness, and born in squalor, was a half idiot; predestined to be a hopeless imbecile for life; endowed with just enough intelligence to exhibit the light of reason in dim eclipse:--a sad and pitiful spectacle in his mother's house to-day, where he roams from room to room, muttering noises more sepulchral than human; a daily agony to the woman who bore him, hoping more of her burden; and heightening the pathos of the perpetual scene by the uncommon sweetness of his temper which, by winning every one's love, doubles every one's pity.'
In the context of the many (many) revelations about Woodhull that came out in 1872, and again the next year when she was on trial in connection with the Beecher-Tilton scandal, the existence of her son wasn't even a blip. And neither was the excessive horror-tinged language used in passages like the one quoted above much of an issue--it was clearly political language meant to evoke an emotional response (shock? admiration?), and it was the kind of language Woodhull herself used on the lecture circuit when describing Byron. She never hid Byron, never institutionalized him, always made sure he was well cared for, brought him along when she fled her legal problems and moved to England. But she was no friend of people with disabilities--she was, rather, an early and enthusiastic proponent of eugenics.

Woodhull's run for the presidency was clearly symbolic--generations before American women had the vote in national elections, she had no chance of winning, and to compound the impossibility she was younger than the minimum age specified in the Constitution--but it wasn't frivolous. She used the platform it offered to talk about women's rights and her views of marriage, education, and economics. She was a fascinating woman, a brilliant speaker who took outrageous positions, and enjoyed the stir she caused. And 136 years ago, she was the first woman candidate for the White House AND the first to work a son with developmental disabilities into her campaign.

[Woodhull wouldn't have a chance today either, but man, what 24-hour cable news would do with her story.... wow.]

Saturday, September 06, 2008

September 6: Jane Addams (1860-1935)

[Image description: Sepia portrait of an unsmiling Jane Addams, younger, seated, facing camera with her elbow on a table and an open book nearby]
I do not believe that women are better than men. We have not wrecked railroads, nor corrupted legislatures, nor done many unholy things that men have done; but then we must remember that we have not had the chance.

--Jane Addams, in a speech to the Chicago Political Equality League in 1897
Settlement movement leader, feminist, and Nobel laureate (Peace, 1931), Jane Addams was born on this date in 1860, in Cedarville IL. She was a major figure in the international women's suffrage and peace movements, and among the founders of the ACLU and the NAACP.

Addams had spinal curvature and other permanent effects of tuberculosis in childhood, effects which were treated with experimental surgery and injections in her twenties, and a back brace made of steel, whalebone, and leather. She experienced chronic back pain for much of her life, both from the disease and from the treatments available. She mentions her own disability (and uses that word) in her classic memoir Twenty Years at Hull House; she also writes about the "crippled children" she sometimes encountered in her work:
The first three crippled children we encountered in the neighborhood had all been injured while their mothers were at work: one had fallen out of a third-story window, another had been burned, and the third had a curved spine due to the fact that for three years he had been tied all day long to the leg of the kitchen table, only released at noon by his older brother who hastily ran in from a neighboring factory to share his lunch with him....Hull-House was thus committed to a day nursery which we sustained for sixteen years.... (88)

Thursday, September 04, 2008

Memo to Governor Palin

Some notes about this passage in your speech last night:
"And children with special needs inspire a very, very special love. To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House."
1. We're not friends. We may have some things in common--motherhood, kid with a chromosomal diagnosis, age give or take a coupla years, race, messy dark hair, glasses, check check check--but we've never had a coffee together, or watched each other's kids, or worked on an art project together. And I don't see any of that happening in the future, either. So cut the "you've got a friend" line. I grew up in a state where that sentiment was on every license plate, and it means nothing when used in such a wholesale, consequence-free way. Worse, it devalues the real worth and work of friendship. I like and need friends. You're just not one of them.

(BTW, I also bristle at agency literature using words like "partner"--uh, no. Unless you're willing to take a 3am shift whenever kids are sick, you're not my partner in this.)

2. I don't think "very, very special love" qualifies as a policy. My kid doesn't need your "special love." He needs to have his rights recognized and protected; he needs the appropriate school education the law says he's entitled to; he needs accessibility to make living in the community a reality instead of a goal, and not just when he's a kid, but his whole life. I expect a vision with policy specifics. Hey, there's one!

3. Unless you started being a disability advocate long before your youngest son was born in April of this year, you're not in any position to use the term "advocate" for yourself. It's presumptuous to claim otherwise. You're still learning. Keep learning. Gotta say, I'm glad there were no reporters writing down my every word when my son was four months old--I'm sure anything I might have said about disability back then would have been a bundle of contradictions and confusion, because I didn't have near enough experience to speak otherwise on the subject. (And I'm still learning every single day, after thirteen years.) Presenting yourself as the stereotypical "kn0w-it-all mom" who is (rightly) dreaded by many in the disability world is not doing the rest of us parents any favors, so please rethink that pose.

4. Truth is, I was never going to vote for your ticket anyway, no matter who the VP choice was. But you're sure making me more secure than ever about that position.


5. Belittling the important work that community organizers do? Really not cool.

6. Vice-president Cheney, by all accounts, loves his daughter Mary--but it doesn't make the administration in which he serves any friendlier to gay marriage or same-sex parents. And Sarah Palin, by all accounts, loves her little son--but that doesn't mean the administration in which she'd serve would set any priorities for the equality of people with developmental disabilities.

LINKS: More Palin critiques and commentaries from disability bloggers:

Joel at NTs are Weird
Kara at Disaboom
William Peace at Bad Cripple, and in a sequel post
Sweet Machine guest posting at Shakesville
BadMama at BadMama
Sarahlynn at Yeah, but Houdini Didn't Have These Hips
Ruth at Wheelie Catholic
Dave at Chewing the Fat
Angie at Nuvision for a Nuday (and more from Angie here)
Terri at Barriers, Bridges and Books
Cindy at Bissellblog
CityzenJane at Daily Kos
ABFH at Whose Planet is it Anyway?
Emily Elizabeth at Lovely and Amazing
Kristina Chew at Autism Vox
Nicole at All 4 My Gals
Miryam at Breeding Imperfection
Becky Blitch at Open Salon
Dad at Kintropy in Action

See also Patricia Bauer's really nice FAQ about Palin, Down syndrome, and policy (thanks to Jeff at Big Dawg Tales for the heads up on that one), and the disability-specific portions of both the RNC and DNC platforms, as laid out at JFActivist (thanks to Stephen Drake at Not Dead Yet for pointing that one out).