May 8: Douglas A. Martin (1947-2003)

May 8 was the birthday of Douglas A. Martin, a leader of the disability rights movement in Los Angeles in the early 1970s, active in Californians for Strong Access, and co-founder and director of the Westside Center for Independent Living in 1975. In 1971, he was the first grad student with a "significant disability" to win a UCLA Chancellor's Fellowship--and the next year he was UCLA's first disabled teaching assistant. He earned a PhD in urban studies at UCLA. Martin co-founded the Chancellor's Advisory Committee on Disability in 1983, and was a Special Assistant to the Chancellor to coordinate ADA and 504 compliance on campus. On the national level, he lobbied tirelessly to remove work penalties from Social Security provisions. Martin died way too soon, in 2003, at age 55.

There's a really good, long, interesting oral history interview with Douglas Martin, conducted in 2002 by Sharon Bonney, available in transcript at the Bancroft Library website. (There are also audio and video clips. This might be limited access, I'm not sure.) One section that particularly caught my eye was about his three years in an Omaha hospital after contracting polio at age 5; television was new then, and a great distraction for a ward full of children in iron lungs. But the Army-McCarthy hearings were running on the only channel for much of the day! Martin remembers that planting a seed:

It just really gave me a sense of, there's a whole big wide world out there going on, and you know this political world and all this stuff. It was interesting. Didn't have that much to do with it at that point except take it all in. But later I guess, it might have been part of the reason I was interested in politics, and getting involved in Washington, and kind of having knowledge. There was so much information and detail about the system, and how it worked and how it didn't work, in those days. Some of the best and some of the worst in people in politics came out. It was fascinating, and I guess I got interested, I saw it to be a place where you could make a difference. I kind of filed it away in the back of my mind. I kind of remember that as possibly motivating, as some basis for later interest in trying to bring about social change, something more positive. (here)

I don't watch TV if I can help it when I'm in the hospital. When my kid is hospitalized, it's usually in a shared room, and there's little choice. I remember being in a quad isolation room with him during the 1998 Clinton impeachment hearings; the mother across the room was shouting at the commentators a lot. Think I also saw an Olympics opening festivities in a PICU once? I know another mother whose son was born in July 1969--so she and the other women giving birth that week were among the Americans who did not see the Neil Armstrong moon landing live.

What have you seen--or not seen--on TV during hospital stays?

March 20: Fred Rogers (1928-2003)

[Image description: Mr. Rogers, at his closet, with one arm raised as he dons his familiar red cardigan]

"You are an important person just the way you are."

This Thursday would have been Fred Rogers's 80th birthday. In observance of the date, the City of Pittsburgh (Rogers's homebase) is inviting folks everywhere to wear their favorite sweater -- if you have one, a zippered cardigan would be most appropriate -- and send in a photo or video. Here's a video explaining "Won't You Be My Neighbor?" Day.

Fred McFeely Rogers wasn't disabled, but for many American children, his show was an early introduction to people with disabilities, adults and children, as "neighbors"--ordinary, interesting, full members of the community. Longtime cast members on Mister Rogers' Neighborhood included Chef Brockett (played by the late Don Brockett), owner of Brockett's Bakery, who sometimes talked about his physical disability (he had a visible limp); and Mayor Maggie (played by Maggie Stewart), who was a professional ASL interpreter as well as a town executive. Violinist Itzhak Perlman was a guest on Rogers's show, and later played at Rogers's funeral, expressing his admiration for the man.

Children with disabilities were regularly cast as Mr. Rogers's friends, and he spoke with them in the same vein of polite curiosity and spontaneous decency that he did with all his guests. (See the late Jeff Erlanger's fond remembrance of his appearance on Mr. Rogers, including clips, here.) In a well-known episode of the show, Rogers took viewers to visit Children's Hospital of Pittsburgh, to demystify the experience of hospitalization. Rogers's Let's Talk About It: Extraordinary Friends (Penguin Putnam 2000) is a picture book for very young children, featuring photos of six real kids playing, disabled and non-disabled, with short bios of each kid in the back--so they're not just models or wheelchair users, they're real kids--pet owners and team members, who like pizza and dolls and swimming. The text of my favorite page:

"If you feel like trying to help somebody, it's a good idea to ask first. Sometimes people want help, and sometimes they don't."

I'll be wearing my cardigan tomorrow.

Paging Dr. Cliche ...

The television writers are on strike. This is national news, I realize, but it's also local chatter here--I drive past the picket line at Raleigh Studios Manhattan Beach some days, it's only a mile or two from my house. I was talking to a striking writer at a small dinner gathering last night, and an assistant director who's also affected. That's LA for you. But one show's writers probably shouldn't rush back to work--if recent episodes are any indication of their mindset.

Cilla Sluga at Big Noise explained what was wrong about last week's mess on ER: an episode in which a doctor and a young teen decide the kid (who has a terminal illness) shouldn't live any longer, so they lie to the kid's mother about treatment options--and this is presented as a noble gesture on the doctor's part, not as gross malpractice. One character objects, but doesn't go farther than voicing her objection. (And as Sluga further reveals, the episode was written by an ER doctor at Children's Hospital LA--a scary twist to the story.) In this week's episode, William Peace at Bad Cripple catches another doozy: a wheelchair user is the tired "bitter cripple" stereotype, complete with lines like "anger is my baseline" (which would make a fine t-shirt, but as a summary of a disabled character, ugh). One implication of his storyline is that he can't be a good parent because, uh... because he can't clean the gutters. What?

It wasn't always like this: ER has in the past done much better by the disability community. Characters with physical, mental and sensory disabilities have been presented as rounded human beings with full civil rights, at least as well as any other 44-minute network TV drama has done (admittedly, that's a low standard to achieve). One highlight was a 1998 appearance by Neil Marcus, which was about showing disablist assumptions for the dangerous errors they are.... not about confirming those assumptions for viewers.

I hear that this is ER's last season. Maybe that's for the best.

UPDATE 12-7: William Peace notes that the 300th episode (much hyped, aired this week) was also cringe-worthy.

ASL, the Lost Experience, and YouTube

"The Lost Experience" is a summer ARG (alternative reality game) meant to keep fans of the ABC television series "Lost" engaged until the new episodes air in the fall. One component has been the search for clues, in the form of "glyphs," strings of characters that can be used to access seventy video fragments, which will in turn eventually be assembled into a bigger picture. Players from all over work together to solve anagrams, codes, and literary and scientific references. Clues have appeared in television commercials, on websites, on phone messages, on t-shirts and wristbands, on the display in Times Square, and yesterday, a clue appeared.... in American Sign Language, in a YouTube video. (The "glyph" is part of the symbol on the signer's shirt; the signer's message does not match the video's voice-over, but instead communicates details for the game's story.)

You can follow how the players responded to this in the comments at The Lost Experience Clues blog. It didn't take long for a few regular players with ASL fluency to be found, and online (partly in chat) they worked on a translation together--discussions have touched on problems such as the video's quality (too grainy for the fingerspelling to be easily read, even in slowed down versions), the signer's distracting attire, the close-cropping of the video (for game purposes, the signer's face cannot be shown, and the gamers have discussed how that hinders ASL communication somewhat). Some players posted slower or false-colored versions of the video, to be helpful. So, hundreds, maybe thousands (the video has been viewed over 1500 times in its first day), of Lost gamers are learning something about ASL, or using what they already know, this week.

Elsewhere on YouTube... Caughtya.org recently linked to a wicked New Zealand public service announcement about accessible parking, definitely worth a peek. There's a lot of junk on YouTube, but there's also a lot of potential, like most formats.