Neurodiversity Symposium, 5 August 2011, Syracuse University

Found at http://neurodiversitysymposium.wordpress.com:

On August 5, 2011, Syracuse University will be hosting a regional symposium on neurodiversity and autistic self-advocacy. Neurodiversity is a concept and social movement that advocates for viewing autism as a variation of human wiring, rather than a disease. As such, neurodiversity activists reject the idea that autism should be cured, advocating instead for celebrating autistic forms of communication and self-expression, and for promoting support systems that allow autistic people to live as autistic people.

The purpose of this event is to raise public awareness of the concepts of neurodiversity and the different facets of the neurodiversity movement, and to increase understanding and dispel myths about what it means to be against curing autism. The symposium will also address the ways in which the concept of neurodiversity can be expanded beyond just autism to include other atypical forms of neurological wiring, such as ADHD, hydrocephalus, and dyslexia, to name a few.

The event will kick off Friday with a keynote by Ari Ne’eman, Founding President of the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/) and the Vice Chair of Engagement on the National Council on Disability (http://www.ncd.gov/). Ari’s keynote will address issues such as the history, current state, and future of the neurodiversity/autistic self-advocacy movement, and autistic self-advocacy in politics.

Following the keynote, local activists will lead panels and smaller discussion on more specific topics related to neurodiversity, such as: autistic culture, allies, neurodiverse parents, self-advocacy, popular culture/conceptions of autism, dealing with sensory difficulties while still being anti-cure, and self-empowerment through facilitated communication and other non-verbal forms of communicating.

PLEASE NOTE: This is still a work in progress. Consequently, the content of panels is subject to change somewhat in the next few weeks. The exact time at which they keynote will begin, and when the panels will be held, has not yet been decided conclusively. Any updates will be posted to this page.

Cost: FREE!!!

Registration info: Preliminary registration is now available on this site.

The Neurodiversity Symposium is sponsored by:

• The Beyond Compliance Coordinating Committee
• The SU Center on Human Policy, Law, and Disability Studies
• The SU Disability Cultural Center Initiative
• The Institute on Communication and Inclusion
• The SU School of Education
• Cultural Foundations of Education, School of Education, Syracuse University
• The Taishoff Center for Inclusive Higher Education
• The Department of Teaching and Leadership

Sensory Friendly Film Screenings

Got this email through a local group:

Subject: Autism Society of America and AMC Entertainment to Host Films

AMC Entertainment (AMC) and ASA have teamed up to begin testing a pilot program to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis.

"Sensory Friendly Films" premiered across the country last August, and are continuing with a special showing of the new film Bolt for December.

For these movies the lights are up a little, the sound is down, there is no "silence is golden" rule, and people can bring in special dietary snacks.

An interesting experiment, similar to Parent Movie Mornings at some theatres on weekday mornings, where babies are welcome instead of frowned upon, secure stroller parking is offered, and the volume is down. And no doubt any such realistic accommodations are a godsend for many families.

But once again, the sensory-friendly screenings are targeting families and showing kid movies at this pilot stage, rather than imagining there are adults who might also like to "enjoy their favorite films in a safe and accepting environment" that includes lower volume and BYO snacks. These conditions don't have to be "special" or just for children--they might be appreciated by a much wider audience if the option were offered.

Say what?

From last night's debate (transcripts here):

MCCAIN: She'll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we've got to find out what's causing it, and we've got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

So... Sarah Palin understands about autism, because she has a six-month-old with Down syndrome? Walk me through that one, please. (Not surprisingly, Kristina Chew has the same question, with links. Yes, Palin has a nephew with autism. So do a lot of other people. That fact alone is not so impressive a qualification as McCain seems to think.)

And still, again, and again, only families with "very special needs" children are mentioned in the campaign's discussions of disability. What about disabled adults who need healthcare, jobs, access, transportation, etc. etc.? No mention of adults. What do they imagine happens to the "very special needs" children after about twenty years?

A hug and a wink from Sarah Palin won't keep my kid alive and well. Niceties are not a substitute for the programs and regulations that protect his rights--and his life.

Be sure to check out William Peace's commentary on the same passages in the debate transcripts, for further discussion.

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.)

SECOND EDITION OF ‘JAMES CASTLE: HIS LIFE AND ART’ EXPANDS ON STORY OF MISUNDERSTOOD IDAHO ARTIST

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

Hang in there, Alex Barton--and your classmates, too

[Image description: Composite photo of a kindergarten class--mine--captioned "Jefferson School 11 1971-1972 Kindergarten"]

Hey Alex, what happened to you should never, ever happen to any kid, anywhere--you had a right to a kindergarten experience that left you excited about school, not one that left you feeling rejected by peers and your teacher. I know--because I had a pretty awful kindergarten teacher too. It was a long, long time ago, and I'm pretty sure she's gone now; she was on the verge of retirement when I had her. She tried to switch me from lefthanded to righthanded, moving the marker from hand to hand whenever she caught me doing my thing. (It didn't work.) When she saw me reading, she snatched the book and told me my parents had "ruined" my life by letting me learn to read so young, without expert instruction. I went home and stood on my head and tried to forget how to read, figuring she must be right. (That didn't work either.)

But what I remember most was that she humiliated a little boy, made him stand in the middle of the room and take her berating in front of all of us, for the crime of.... leaving the toilet seat up. Did any of us object? We wouldn't have dared. Did any of us reach out to him afterwards? I don't remember. Do any of those sweet little boys in that photo above look like they deserved that? They didn't. They couldn't. A lot of us, including that little boy and me, we graduated high school together--and I'm sure none of us forgot that moment.

Alex, your classmates, the ones who were led to vote against you, will be haunted by this moment. They were asked to be cruel to you, by an adult they trusted. Two of them voted in support of you, by all accounts, and they're obviously great kids, but the others aren't bad kids, just five years old. The adult in this case should be removed from the classroom and disciplined and, if possible, trained out of whatever ideas got her to this place; but the kids are just kids who were put in a terrible situation.

And Alex, you're just a kid too--and you absolutely didn't deserve this. But hang in there-- with any luck, you will also meet amazing teachers and peers, and learn, and flourish. A whole lot of us are watching now, and we expect the best for you.

They're onto us, Kathleen

Many folks have been following the Kathleen Seidel subpoena story--it's being discussed in various sectors of the blogosphere, not "just" on blogs about autism but on blogs about science, law, and blogging itself. (I Speak of Dreams has been compiling a good long list of blog responses to the controversy.)

My in-house science consultant (aka, my husband, the physicist) pointed me to this choice quote in the response by one of the attorneys seeking access to Seidel's email files. Apparently they think her connections should be treated as suspect because she's

"a person utilizing investigative ability well in excess of that available to the mother and housewife she claims to be..."

Uh, whuh? I can't understand, maybe I'm a little distracted, what with the jangle of minivan keys in my pocket and the Spongebob songs running on a loop in the next room... but "mother and housewife" status doesn't limit my "investigative ability," and it is surely completely irrelevant to Ms. Seidel's capacity for finding and analyzing published or public-record legal and scientific documents, too. Now I'd say more about this, but my suspiciously excessive ability to use a search engine doesn't get the dishwasher loaded or the other kid off the schoolbus...

Talk: How Culture Shapes Autism

NYU Council for the Study of Disability, The Psyences Project and The Department of Anthropology present ...

WHAT IN THE WORLD IS AUTISM? How Culture Shapes An Illness
a lecture with Roy Richard Grinker
Professor of Anthropology, George Washington University, Thursday, April 17, 2008, 3:00-5:00PM
King Juan Carlos Center Screening Room, 53 Washington Square South

How did autism shift from being a rare disorder, occurring in 3 in 10,000 people to an "epidemic," occurring in 1 in 150 people? Is this evidence that scientists are finally counting cases correctly, or is it the result of advances in mental health and education? In this lecture, Roy Richard Grinker, author of Unstrange Minds: Remapping the World of Autism, answers these questions from the perspective of an anthropologist, and as the father of a child with autism. Grinker will discuss the shift in how we view and count autism is part of a set of broader shifts taking place in societies throughout the world.
Co-sponsored by NYU's Center for Religion and Media and NYU's Center for Media, Culture and History.
All events are free and open to the public. Seating is on a first- come, first-served basis.

No more Ransom Notes

Happy news today (via Stephen Drake) from Ari Ne'eman of the Autistic Self Advocacy Network:

I am pleased to inform you that this afternoon the NYU Child Study Center
announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that
announcement here. The thousands of people with disabilities, family members,
professionals and others who have written, called, e-mailed and signed our
petition have been heard. Today is a historic day for the disability community.
Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the
NYU Child Study Center, I have obtained a commitment to pursue real dialogue in
the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

November 11: Kim Peek (b. 1951)

I have so many things in me that you can't even guess them all.

Kim Peek, American "mega-savant" and one of the real-life models for the Raymond Babbit character in Rain Man, turns 56 today (November 11). He seems to have a variety of diagnoses and labels, but he also defies prognoses and assumptions. There's an hour-long documentary about him, available in five parts (uncaptioned) on YouTube. The narrative arc of the film follows Peek and his father on a trip to some medical specialists, so it's pretty focused on his unique neurology. And there are a lot of clips of his public appearances, where Peek's answering trivia questions about dates and baseball. But it still gives a picture of his personality, his history, his relationships (especially with his father), and plenty of direct commentary from Peek, so it's not just talking about him.

What's in the notebooks of Joseph Gousha, Jr. (1921-1998)?

There's just a little sentence in the online catalog entry about the Dawn Powell Papers at Columbia University Rare Books and Manuscripts libraries: "There are 4 scrapbooks of her husband, Joseph R. Gousha, recording the plays he saw in Pittsburg [sic] from 1910 to 1914, and 4 journals of her son."

What's in those four journals of Joseph R. Gousha Jr.?

There's a disability history project calling out to be done here. Joseph Jr. is one of the so-called "hidden horde"--a man with autism born decades before autism was named. His isn't a pretty story, but it's well-documented, because his parents were both writers; and it's well-preserved, because his mother Dawn Powell was a novelist and playwright of some note. She kept diaries and wrote letters, too--and she wrote a lot about her only son. The story of Joseph Jr. (he was called "Jojo" by family in his life, but I'm going to call him by his formal name) is in there--here are the outlines I can glean from online accounts of Powell's life:

Joseph Gousha Jr. was born 22 August 1921, in a difficult delivery, in Manhattan. He was the only child of Dawn Powell (1896-1965) and Joseph Gousha (1890-1962), both writers, though his father also had a career in advertising. By the time young Joseph was three or four (about the time the photo above was taken, with his mother), it was clear that he was different from most children--he got labeled "retarded," and "schizophrenic," but most accounts agree that "autistic" would be the label he'd have today. His parents hired a live-in nurse, Louise Lee, who stayed with them even during Joseph Jr.'s frequent hospitalizations and residential school placements, beginning in the late 1920s.

Here are some terse lines about him from Dawn Powell's 1930 journal entries:

July 28. jojo came in from country to go to Mt. Sinai with Louise and Bobby. Sick-looking.

October 28: Worried alternately about book and Jojo. One worry lulls and absorbs the other.

November 2: Took Jojo to Dr. Jamieson's at Seagirt [New Jersey] for school. Beautiful place but it was hard on the poor little darling and me too.

November 5: Pompous letter from Jojo saying he's studying French and German so I guess he's happy.

In 1938, the 17-year-old Joseph was moved to Gladwyne Colony in Vally Forge, PA, where he lived for the most part until 1952. In 1947, he injured his mother during a home visit, requiring Powell to be hospitalized for more than two weeks. In 1954, Louise Lee left the Gousha household because of her own declining health, and Joseph's parents looked into a lobotomy to make his behaviors less violent; novelist and family friend John Dos Passos is said to have dissuaded them from this course of action. Joseph's parents both became ill in the late 1950s, and both died from colorectal cancers in the early 1960s. His guardian thereafter was his mother's cousin Jack Sherman, who recalled in a radio interview about Powell, "She loved Jojo very much, but realized there was nothing much she could do for him." Joseph R. Gousha Jr. died in 1998, at the age of 77.

If you're looking for more information, or you need a project and you live near New York City, those four journals of Joseph Gousha Jr., should be worth a peek, no?

Katherine McCarron Memorial Day links

She's not the first disabled child to be killed by her mother, but she's one of the latest. And the Katherine McCarron story has autism bloggers and others feeling a need to remember and protest. Wednesday, Autism Hub members will be posting on the story; Thursday, the Autism Hub will be "closed" for 24 hours, as a gesture of respect; Friday, the Autism Hub will reopen as usual.

Already commenting: Kevin Leitch; Ballastexistenz; Kassiane; Kristina Chew; Dave Reynolds, ABFH...there are surely others, but this is a start.