Sighing again

So let me get this straight...

If parents walk into a children's hospital and ask for a highly unconventional series of surgeries to remove healthy tissue and organs, limiting their daughter's growth... a series of surgeries that would never be performed on a nondisabled child... the answer is, fine, because she's developmentally disabled?

BUT, if parents walk into a children's hospital and ask for a very standard surgery to treat an organ that isn't functioning properly, a surgery that will improve their daughter's health and very probably prevent an early death... a surgery that is routinely performed on nondisabled children... the answer is no way, because she's developmentally disabled?

Got it.

(Wolf-Hirschhorn syndrome is caused by a partial chromosomal deletion--just like my son's (unnamed) diagnosis, only it involves chromosome 4 instead of chromosome 7. Chromosomal anomalies can cause a whole array of anatomical and physiological differences that would complicate a surgery, or make it riskier, and I'd certainly expect those particular complications and risks to be explained to me in the planning stages of a surgery. But that's not why Amelia is being disqualified, according to her mother's story.)

Barriers Bridges and Books has a compilation of links about this story. Stephen Drake is also on the case.

Call for links, January Disability Blog Carnival: "Words"

Emma at Writer in a Wheelchair was the first to claim hosting duties for the Disability Blog Carnival in 2012. And now she has the call for submissions for January's edition up:

this year I've decided that a focus word might be a good thing to have along with my goals for the year. And the word I've chosen is Courage.

For the carnival this time round I thought it would be interesting to know what other people's words are.

Have you come up with a word of the year?

What words do you really hate?

Or like?

Does disability shape your view of language or even individual words?

Those are a few ideas that I came up with for the carnival but I can wait to see what others think of!

Submissions can be left in comments here, tweeted to me @FunkyFairy22 or emailed to ejcrees@googlemail.com if you email please put carnival or similar in the subject so I know it's not spam

The carnival will be on Tues 31st Jan and ideally I would like entries by Sun 29th please.

Disability Blog Carnival #79 is up NOW!

It's been up for a day or two already, but it's still fresh and worth a visit (or two, or ten). Check out the December edition at After Gadget, where the theme is "Disability and Occupy," and the entries are grouped to subthemes, like "Occupy Activists with Disabilities" and "Educating Occupies about Disability and Access Issues." (In case you think it might be all happy tales, there's also a section on "Exclusion and Alienation.") Also read through the comments for some additional entries. Carnivals that gather up links about current events are so valuable in shaping the ongoing conversation, and help bring attention to issues that might otherwise be dismissed as individual experiences. Thanks so much to Sharon at After Gadget for a fine edition.

Now to 2012! Would you like to host an edition of the Disability Blog Carnival in the new year? I'll take host offers in comments here; you'll also need to send me an email address or twitter handle so I can send you any reminders, schedule changes, or submissions. I'll keep a running calendar below, and fill it in as the slots are taken. If your name appears in the table below, consider that a lock--and start planning your edition!

JANUARY (#80): Emma at A Writer in a Wheelchair (theme: "words")
FEBRUARY (#81): Dave Hingsburger at Rolling Around in my Head (theme: "loving")
MARCH (#82): I'm Not My Disease (theme: "firsts")
[APRIL (#83): Disability.dreamwidth.org]  Not posted
[MAY (#84): Spaz Girl at Butterfly Dreams] Not posted
JUNE (#83): Never That Easy
JULY (#84): Caitlin at Stream of Caitlinness
AUGUST (#85): Stacie at Riley's Smile
SEPTEMBER (#86): Emma at A Writer in a Wheelchair
OCTOBER (#87): Dave Hingsburger at Rolling Around in my Head (theme: "birthdays")
NOVEMBER (#88):
DECEMBER (#89):

Wheels of life

Professor of Political Science in the Department of Science and Technology Studies at Rensselaer Polytechnic Institute visited us at the CSIC last summer. We,-that is, Paco Guzmán, Mario Toboso and yours faithfully- had the opportunity to share knowledge about artifacts ideology, which is Langdon´s expertise related with disability. You can visit Langdon´s webpage at: http://homepages.rpi.edu/~winner/ And his blog at http://technopolis.blogspot.com/2011/12/from-disability-to-functional-diversity.html

Disability Blog Carnival #78 is up now!

Actually, it's been up for more than a week--but I just found it. My apologies to the host, the contributors, and all eager followers of the carnival. Anyway, Martha at Believe in Who You Are has the November edition, around the theme of inspiration (in all its complexity). Go have a visit, definitely some fine links worth checking out.

The December edition is scheduled to be hosted at After Gadget. Here's the very thorough and clear call for submissions, around the theme "Occupy!" Links are due December 26, for December 28 posting.

In January I'll start recruiting hosts for the 2012 editions, so watch for that if you've been anxious to host a round.

Halftime Handoff

Every week during halftime on Sunday Night Football, Toyota announces which sports-related non-profit organization is getting $10,000 in their weekly campaign to publicize such groups. Last Sunday, it was Shane's Inspiration's turn, and my son is in the 15-second video's opening scene (blond kid in the Convaid chair, on the right of the picture, next to the rollerslide):



[Video description: Children playing on an accessible playground, some visibly disabled, some not--they are sliding, climbing, rolling, and smiling--sunny afternoon, colorful autumn clothing]

[Audio transcript: "Thanks to your votes, Toyota is proud to donate $10,000 to Shane's Inspiration, a Southern California-based foundation that helps build playgrounds accessible to children with physical disabilities. Every week, visit facebook.com/toyota to vote for the next Toyota Halftime Handoff."]

Okay, 15-seconds of a corporate ad, probably not going to change the world. BUT--some of the folks watching football on Sunday night never thought about accessible playgrounds before. Now they've heard the phrase. Maybe one or two of those folks are on a town council or city planning board, and when they hear the phrase again, they'll associate it, subconsciously, with smiling children and a nice evening watching football. And maybe, just maybe, that means they vote yes on the proposed accessible swing in their neighborhood... not even knowing why.

(There's a two-minute version of the ad coming out next week, for the Toyota website and Facebook page and YouTube -- I'll post that here when it's available.)

Sequel to an Obituary

ARC Handbell Choir, Westwood
Originally uploaded by pennylrichardsca

More than five years ago, I wrote about Dixie Henrikson here, after seeing her obituary in the Los Angeles Times. Henrikson (d. 2006) was one of those mid-20th-century mothers of a disabled child who was tireless in founding programs--in her case, social activities for young adults with developmental disabilities. One of her prides was the English-style handbell choir she founded, which performed a lot in Los Angeles.

Well... five years later, I happened upon that handbell choir Mrs. Henrikson founded, as guest performers at a play day in an accessible playground in Westwood. What fascinated me was the adapted score the conductor used (in the image above), which was devised by Dixie Henrikson herself. The choir of adults are not, mostly, able to read music, so the usual format won't work. The conductor told us that she has to transcribe tunes into this system's boxes of letters and colors, and transfer those transcripts to plastic window shades, so they're both large enough for the ringers to see during a performance, and sturdy enough to last through years of use. By demonstrating how the score works, the conductor made the choir not so "tricky"--oh, the audience can say, it's not magic or charm, it's a clever adaptation that supports the players where they are.