Tuesday, May 27, 2008

The Art of Real Life [Carol Marfisi]

I was among thousands of museum goers who attended the Frida Kahlo exhibit at the Philadelphia Museum of Art. It is an understatement to say that the works were compelling and heart wrenching. Having a bit of anthropological DNA in my blood, I always tend to not only appreciate the main exhibit but the experiential exhibition of the observers. It is quite intriguing to watch how people respond to not only the main feature in a physical space but also how they interact with one another, but mostly strangers as we journey through different historical and cultural planes.

There were obviously many reactions to Frida Kahlo’s life and works. My co-observers focused on different levels and features of the artist and her works. Some were solely concentrated on the aesthetic and technical aspects of her paintings. Others were immensely intrigued by her culture and social dynamics which influenced her creativity. Oddly enough, I didn’t overhear anyone comment on her disability. Her life and brilliance of her works may very well have overshadowed that particular element of her character and life.

I would say that the experience was memorable for me, but rather typical as far as museum expeditions go. It was not until I exited the museum that the real unveiling of life began. Wanting to go into the city, I began to board a tourist bus. With relative naivety, I said to the driver, “Will you please deploy the wheelchair lift?” I should have known when he looked a bit confused and annoyed that drama was right behind. It took 45 minutes for this untrained driver to learn from a tourist from California how to operate the wheelchair accessible equipment. The driver, besides being frustrated and embarrassed, was being harassed by a string of drivers who were behind the tourist bus. They honked and yelled as if that would expedite the process. Many people including the museum staff were visibly upset at this interruption in their schedule. They were people with places to go and people to see and this one stranger in their midst was holding up progress.

Part of me felt bad for the inconvenience but a larger part of me wondered how much the tourists who saw the exhibit were sensitized by their understanding of Kahlo’s life. Did they have a glimpse into the disability experience and how that may have impacted Kahlo’s emotional creativity?

[Image description: the painting "Broken Column" by Frida Kahlo, 1944]

RIP: Jim Hayes (1949-2008)

A whole generation of people who started disabled student services and campus wheelchair sports teams is passing away. I caught this obituary from over the weekend. Jim Hayes was born in Fort Worth, Texas, in 1949. He injured his spinal cord in a diving accident on his 18th birthday. Hayes went on to be student body president at his junior college, then president of the Handicapped Student Association at the University of Texas-Arlington. After his graduated in 1974, he took a job on the Arlington campus, launching the Office for Students with Disabilities. Later, he was the ADA compliance coordinator on campus.

Jim Hayes also had a lifelong passion for sports. He started wheelchair basketball and wheelchair tennis programs at UTA. In 2000 he became full-time coach of the Moving Mavs --who won seven National Wheelchair Basketball titles under Hayes' direction. Hayes was a wheelchair road racer himself; he won a gold medal at the 1984 Paralympics, and he volunteered at the National Veterans Wheelchair Games. In 2004, one of his former students, Randy Snow, became the first wheelchair athlete inducted into the Olympic Hall of Fame. UTA students or alumni have represented their home nations in every Paralympics Summer Games since 1984. As a result of Jim Hayes' work, the UTA sports program was one of the first in the US to give full athletic scholarships to physically-disabled students.

Hayes died Friday, at the age of 58.

Sunday, May 25, 2008

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.

Friday, May 23, 2008

Book Tour: Cripple Poetics by Petra Kuppers and Neil Marcus

Homofactus Press has us on their blog book tour schedule (and apparently CripChick and Wheelchair Dancer are also stops on the tour). The book they've sent us information about this time is Cripple Poetics by Petra Kuppers and Neil Marcus (photos by Lisa Steichmann), which they describe as "by turns playful, unsettling, raw, and moving...an immersive and sensual correspondence that builds and heats by accretion--one keystroke at a time." Kuppers and Marcus are each, individually, respected performance artists in the field of disability studies. If that sounds like your bag, check it out when it's released this summer--or check out some excerpts here. New to the idea of "crip poetry"? Check out Jim Ferris's "Crip Poetry, or How I Learned to Love the Limp" essay, here.

Petra Kuppers was my roommate at the first Society for Disability Studies conference I ever attended, in 1999, which was also where I first met Mike Dorn. (Petra laughed because I bundle up to sleep, socks and all. You might guess from her work that she's not so much for the bundling.) Whenever you think, wow, it would be so cool if someone could combine this topic and that topic and do something provocative with all the intersections and overlaps and contradictions--well, Petra's one of the people who can do such things, and does them beautifully.

Thursday, May 22, 2008

Disability Blog Carnival #38 is up NOW!

Kathryn at Ryn Tales has done a lovely job of gathering a wide variety of posts around the theme "spirituality and disability." Check it out, for heartfelt explanations, pointed critiques, joyful celebrations, and humor, too--because what's better for the spirit than some well-timed laughter? This edition's theme was chosen before the story of Adam Race hit the news, but several of the contributes comment on that current situation, too.

Next edition will be hosted by Emma at Writings of a Wheelchair Princess, on June 12 (three weeks away). She's set the theme "If I knew then..." which seems like a very open invitation indeed, so write something and submit it for consideration: you can use the blogcarnival.com form, or leave your link in a comment here, or at Emma's blog, or you can just use the phrase "Disability Blog Carnival" in your post, and I'll probably find it that way, too.

A note about the blogcarnival.com site: We've known since before we started this Carnival in October 2006 that the CAPTCHA security system on blogcarnival.com is not great for accessibility. We've always had several alternative means of submitting links, and we certainly hope nobody's been left out. But it's lately come to my attention that blogcarnival.com does not have any intentions to update to a more accessible security feature; most inquiries on the matter (including my own) have gone unanswered. This is a problem. Let blogcarnival.com (support@blogcarnival.com) know that they're behind the times with an inaccessible security feature, that better alternatives already exist, and that there are plenty of users who do care about this issue. (And let me know if you find a more accessible site to manage our carnival submissions.)

Wednesday, May 21, 2008

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...

Monday, May 19, 2008

400+ Feeds

Sometime recently, like over the weekend, my Bloglines feeds passed the 400 mark. Now, some of those are defunct feeds that I just keep for the saved posts in them; some are personal friends' blogs, or local blogs, or stuff about history, feminism, maps, music, books, etc. Some are search feeds. But honestly, most of them are disability-related blogs, active and posting a lot! So I guess the 400 mark is as good a time as any to update our blogroll here--it's been a while since I did it--watch for some exciting additions in the next few days.

ADDED LATER: Wow, there are a lot to add. This is going to take a few days. I'm marking new additions to the blogroll "(new)," but truly most of them I've been reading for quite a while--kinda surprised to discover some of them weren't listed here yet!