RIP Harriet McBryde Johnson, 1957-2008

Overwhelmingly sad news today: Harriet McBryde Johnson has died at age 50.

Image description: The photo shows Johnson in a flowered-print navy dress looking toward the camera. She sits in her wheelchair, though the image is a close-up focusing on her and not the chair. Johnson leans forward, right elbow on knee, chin in right hand. She's a middle-aged white woman with dark hair in a very long braid trailing over her shoulder and into her lap. She's not quite smiling, but looking interestedly back at you.

The Post and Courier of Charleston, SC, provides a preliminary notice, with a more formal obituary expected soon (the NYT will have something too, I hear):

Harriet McBryde Johnson, a well-known Charleston disability and civil rights attorney, died Wednesday.

"She worked yesterday. It's a shock to everybody," said friend and attorney Susan Dunn.

She was born July 8, 1957, and had been a Charleston resident since age 10.

She told The Post and Courier that she became an attorney because her disability-rights work had taught her something about the impact of law on how people live. . . .

Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to "the charity mentality" and "pity-based tactics" of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, "I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person."

Some of Johnson's writings:

Unspeakable Conversations in The New York Times, February 16, 2003 -- The magazine cover story featuring her debate with Peter Singer on disability and personhood.

The Disability Gulag in the NYT, November 23, 2003 -- On escaping the institutionalization that threatens so many disabled people.

As New Mobility's Person of the Year in 2004, article by disability activist Mike Ervin

The Way We Live Now: Stairway to Justice in the NYT, May 30, 2004 -- On the U.S. Supreme Court ruling on Tennessee v. Lane.

Overlooked in the Shadows in the Washington Post, March 25, 2005 -- Harriet on Terri Schiavo. (Same article also published at Slate and in audio at NPR)

Too Late To Die Young: Nearly True Tales From a Life, her memoir, published in 2005. Reviewed by Ragged Edge, excerpted in AARP Magazine, and included in a roundup of memoirs by disabled women at Disability World.

Accidents of Nature, her youth fiction book about a sheltered 17-year old girl with cerebral palsy who attends a summer "Crip Camp" and confronts how her physical differences and the accompanying ableism affect her interactions in the world. She and a friend also confront the ableism itself.

Speaking on video about Medical Ethics at Insights TV for the United States Holocaust Memorial Museum. The first section at the link is "Perspectives on Antisemitism," with Harriet McBryde Johnson directly below as part of the "Medical Ethics" section. Clicking on the link by Harriet's photo and below the headline introducing her brings a pop-up window that includes a full transcript. Here's the direct link to that window and transcript.

Wheelchair Unbound in the NYT, April 23, 2006 -- Johnson writes about speaking at the U.S. Holocaust Memorial Museum.

Alas for Tiny Tim, He Became a Christmas Cliché in the NYT, December 25, 2006

A Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon at disability activist Laura Hershey's site Crip Commentary

13 Questions at BBC's Ouch! on May 12, 2008

The Gimp Parade has an index label just for Johnson, and Barry has discussed her writing a number of times at Alas, A Blog.

More links posted as available.

Update: There are links to blog tributes in the comments below and at Alas, as well as this more complete (and more ableist in language) obit in the Charleston Post and Courier.

Friends of Johnson have created this website dedicated to her life and memory.

Cross-posted at Alas, A Blog

I feel sad, too, though unrelenting rage is more appropriate

Many who blog about autism have written about Alex Barton, the Florida five-year-old, whose Kindergarten teacher led his classmates in voting him out of the class after she also had the students tell him, as he stood at the front of the class, what they didn't like about him. From a news report:

After each classmate was allowed to say what they didn't like about [Melissa] Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

Melissa Barton filed a complaint with Morningside's school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said. . . .

Barton said after the vote, Portillo asked Alex how he felt.

"He said, 'I feel sad,' " Barton said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said. . . .

Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special" over and over.

Barton said Alex is reliving the incident.

The other students said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

Last Crazy Horn at Odd One Out is compiling a long, impressive list of posts on this news story as well as links to some resources responding to the topic.

Hiya gawkers!

Yesterday I went to Great Clips to get my hair cut. The hairdresser I've had for the past year got a job at the local bank around Christmas, so I've been badly in need of a trim. But I was also very conscious that in the two years I've had a trach and used a vent I have never gone anywhere "cold" and required a non-medical person to, well, touch me.

Knowing how weird people can be about wheelchair users, I expected a wheelchair user with a trach and vent would make the experience even more of an adventure. I was so right. The level of gawking -- outright staring -- from people less than five feet from me far surpassed anything I've experienced in my 25 years of being visibly disabled.

People stare all the time, right? Three women, close enough for me to reach out and kick them, sat or stood with their jaws hanging down as they stared. And stared. For several very long minutes. It may have been much longer. I had to look away from the rudeness.

I've felt comfortable challenging that in the past, at the very least with a pointed look back, but this time I found myself unprepared and struck silent. I looked back and found absolutely no recognition that they were looking at fellow human being. They stared like I was an alien or three-headed dog. My nurse, a smart outspoken woman, was stunned into silence too.

Then I got busy with what I came there for and the calm business manner of the woman who shampooed and cut my hair. But I felt the Othering shame of those stares in a way I haven't for a couple decades. And here I thought I had this worked out. Damn.

Friday Music: The Blind Boys of Alabama

The Blind Boys of Alabama are an old-school gospel group that's been singing and touring since 1939. Yeah, 1939. That's a lot of cultural and music business changes to weather over seven decades. Originally called the Happy Land Jubilee Singers, the five original singers (Jimmy Carter, the current lead singer, has been with the group since it began) met at the Alabama Institute for the Negro Blind in Talladega.

Clarence Fountain, another founding member, recalls the early years while the singers were still attending the institute: "The school was not happy for us to go off campus, but we would sneak out," Fountain told Folk Roots interviewer Dave Peabody. "We would go out and make some money. There was a big soldier camp up there,had about ten or twelve thousand soldiers. We'd perform for that soldier camp and we'd do alright."

On the band's name change, Fountain says, "For a while we called ourselves the Happy Land Singers and we toured all around the country. Then a promoter put us on a show with another blind group, the Jackson Harmonies from Mississippi. He billed it as a contest between the blind boys of Alabama and the blind boys of Mississippi. The name worked good so we stuck with it."

Known for remaining contemporary and collaborating with many mainstream artists while keeping their traditional gospel sensibilities, the Blind Boys have won four Grammy Awards and their most recent album, Down in New Orleans was released earlier this year.

People not apt to listen to gospel music might know the Blind Boys from their cover of the Tom Waits' song "Down in the Hole" that was the theme song for HBO's drama The Wire. (The show has used a variety of covers of the tune, with the Blind Boys' version used in season one.)


YouTube has a wonderful selection of video performances:

"Something Got A Hold On Me" -- a 1960s live performance
"Too Close" -- the same early-to-mid 1960s performance venue
"Look Where He Brought Me From" -- a live performance in a church, I think, maybe in the 1970s
some old-fashioned musical testifying at an outdoor concert or tent revival
"Run On" -- live 2001 performance on the British tv show Later
"Amazing Grace" -- their live version sung to the tune of "House of the Rising Sun," and here's a studio version someone has set to images of Black American history
"Satisfied Mind" -- Ben Harper & Blind Boys of Alabama performing live (There Will Be A Light, Harper's album with the Boys came out in 2004)
"Shall Not Walk Alone" -- with Ben Harper, video is of a recording studio performance
"Jesus Hits Like the Atom Bomb" -- the video is some cute, quirky animation (2005 album Atom Bomb)

Source

Slumgullion #44 -- Voter ID edition

Here's a bunch o' links on the issue of voter identification, specifically photo ID, and how it impacts disabled people and other folks:

"Take This And Weep" -- Steve Kuusisto at Planet of the Blind comments on the U.S. Supreme Court's recent ruling allowing Indiana's requirement of photo ID for voters in that state.

"The (GOP's) War on Voting Right" -- Perry Dorrell at Brains and Eggs offers a collection of statistics on which Americans are most effected by photo ID requirements. (The League of Women Voters says up to 11% of Americans lack photo ID.)

"More of the Same" -- Mark Siegel at The 19th Floor notes that the story of a South African woman who was denied ID because she has no arms and local bureaucrats required her to submit fingerprints isn't dissimilar from his own experience five years ago here in Minnesota. In both cases, disabled people clearly weren't expected to ever show up and participate in their community as officials had given absolutely no thought to their existence.

"The Politics of Mobility" -- Ruth Harrigan at A Different Light relates the recent story of the elderly nuns in Indiana who were turned away from the polls for lack of proper ID to lack of mobility for many different Americans.

"Is the Supreme Court trying to swing the election?" -- Bob Fitrakis and Harvey Wasserman at AlterNet write about how the ruling on Indiana's photo ID requirement disenfranchises mostly Democratic voters.

"Was Justice Stevens' Water Spiked?" -- Archcrone at The Crone Speaks wonders what the hell Supreme Court Justice John Paul Stevens was thinking when he joined the majority in the vote.

"Voter ID law disenfranchises Americans" -- Mai Thor writing for the Minnesota Daily also summarizes the impact of the Supreme Court ruling.

Got another link about photo ID and voting? Share it in the comments.

And here's an important new(ish) link to check out:

Crimes Against People With Disabilities is a new blog designed to document and catalog the crimes often considered unrelated to disability prejudice and ableism. It joins the recent UK Disability Now magazine Hate Crime Dossier in an effort to connect the stories of abuse and death to show the larger picture of hate crime against the disabled.

Things that crack me up #39

Cilla at Big Noise cracks me up. After my last published edition of what afflicts me with the chuckles, Penny at Disability Studies posted a similar example of restroom signage discrimination where disabled guy is denied clothes. So, Cilla created this Wheelchair Cowgirl for me. Take that half-naked nondisabled Hawaiian guy and Knott's Berry Farm Cowboy Dude!

Image description: Cilla's artwork takes disabled guy, the basic universal disability access symbol, and gives him a cowboy hat, sheriff's star pinned to his chest, fringed chaps (showing the fringes on the underside of his thighs), kickass cowboy boots with spurs, and a lasso swinging in the air from his arm. She's beautiful. Thanks, Cilla!

Check out the 37th edition of the Disability Blog Carnival

Did you know that Dorothea Lange, famed Depression-era photographer, had polio and that her experience with disability informed her work?

Ms. CripChick presents the latest Disability Blog Carnival on Disability Culture and Identity: "Here They Come!"

“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”
—Dorothea Lange on disability

Over 40 bloggers weigh in on how the shared history, struggle, and culture of disability inform personal and group identity. This is an impressive collection of varied explanations on how what is viewed as a deficit by mainstream culture can be a binding force and a cause for celebration. Go and read.

Image description: The icon above, provided by CripChick, is a color image of a self-portrait by Frida Kahlo with the words "DISABILITY BLOG CARNIVAL" in bold black type across the painting. The image is a close-up of Frida in her wheelchair from the 1951 painting "Self-Portrait with Portrait of Dr. Farill" described in detail in both English and Spanish here.

Cross-posted at Alas, A Blog

Happy Cinco de Mayo

Apparently, "wheelchair guy" in Mexico is more interesting than his relative to the north.
















Image description: Two identical simply-stenciled images in bright red paint on a wall. The universal wheelchair access guy holds a gun (rifle, machine gun?) in an upraised hand as he sits inside a five-pointed star. Posted at Flickr by rsinghabout, the image is indexed under "San Cristobal," "Chiapas," "Mexico," "2007."












Image description: On the slope where a sidewalk ramps leads into a street in Mexico City, Mexico, a variation of universal wheelchair access guy is stenciled in black over yellow paint. This guy faces left instead of right and has a very large round head. Posted on Flickr by daquella manera.












Image description: On a large post painted green a round white stencil graffiti painting. The background of the image is white and the wheelchair guy is the color of the green post. He's a completely stylized version of the universal symbol, facing left. He has a very large oblong head with giant eyes, like an alien or maybe a Day of the Dead skeleton. He doesn't appear to have legs but his torso looks a little like ribs, though that may be a function of the illustration since the chair cushion, the chair's arm and the guy's body are all the same color green and each is cleverly articulated despite he drawing's simplicity. The manual chair looks light and speedy. Posted on Flickr by ultraclay!

Things that crack me up #38

Which is more disturbing? That the disabled wheelchair symbol guy is naked or that the nondisabled stick figure guy is not wearing pants?
















Image description: A color photo of restroom signage in the Honolulu, Hawaii, airport, posted on Flickr by Wha'ppen. On a black or dark brown background two white stick figures for the mens' restroom: The universal access wheelchair guy, looking like he always does in simple white outline, sits next to the mostly universal stick figure symbol for the mens' restroom -- a nondisabled standing guy in simple white outline. Except the nondisabled guy is wearing a very festive Hawaiian shirt , yellow with red flowers. The effect of the colorful shirt on the otherwise white figure is that he appears to be wearing only a shirt. Disabled guy doesn't get a shirt.

Culture, chaos theory and choice

So, in my BADD post the other day, I explicitly noted the evil of our U.S. foreign policy in Iraq -- our war that, among other things, disables Iraqi children, many of whom will live their lives in a society with such a damaged infrastructure that their basic needs will never (not for one day) be well met. I know that some people trying to understand disability culture and the idea of impairments as not inherently tragic will be further confused by this. (No, being disabled is not a tragedy, yes, being disabled by an occupying army is an outrage and tragedy.)

The current discussion in comments at Alas, A Blog, started by WheelchairDancer's wonderful post "On Making Argument: Disability and Language" (also with a separate comment trajectory at her personal blog) struggles with this, or with several readers' inability to mesh together the ideas that while being or becoming disabled is not a choice, it is experienced by many people as normal or even filled with various human joys.

The confusion persists, I think, because disability is seen as this separate thing that happens, not as part of the whole spectrum of possible valid and ordinary life experiences. Maybe the breadth of what disability includes causes part of the confusion: we are the person born with spina bifida and the old fart losing his hearing, we are the person born to quadriplegia in a car crash and the cancer survivor who lost a limb while winning the battle, we're the child born with Down Syndrome and the dyslexic movie star, we're the institutionalized schizophrenic and the woman taking anti-depressants to keep moving through her busy day.

Pitting one life experience against another is ludicrous and unfair, of course, but in those comparisons I just made, the first examples are routinely seen as tragic and the second ones are all sometimes -- for better or worse -- seen as either common and ordinary or as triumphs of luck, strength and will. Neither characterization sums up the individual life or experience with disability. With adequate and just support, any disabled individual might lead an utterly ordinary life where his impairments are only one aspect of who he is. Or it might be the very thing that completely defines him. It might inspire him to amazing heights or leave him paralyzed with bitterness. (Yeah, note the metaphor there. Discuss, again, if you like.) People are different like that.

Two people can have the same job, with one hating it miserably and the other blithely content. Neighbors living side-by-side for sixty years can lead incredibly different lives. All life, but maybe especially disability, is chaos theory in action. Any outcome might be true.

The thing that makes the war in Iraq and the children it disables an outrage and tragedy is the degree of human choice. Someone somewhere (or many someones) makes a decision, and it leads to this event causing pain to other people. To value freedom and the individual means to value and support choice wherever possible and to be against human actions that limit freedom and choice of others. I don't find that contradictory to also embracing the disability experience as one that is in many ways fulfilling for many of us, even though few of us got here by choice and some of us have been injured at the hands of others.

The Most Important Disability Policy

I had a hard time choosing one topic for this year's BADD. There's the presidential candidates' disability policies, McCain's refusal to even listen to the concerns of disabled Americans worried about institutionalization, funding cutbacks sure to threaten the mobility and health of disabled Americans (and all Americans) even more in the future.

A judge in Kentucky recently found a man named Ohmer Portwood guilty of breaking the pedestrian code for driving his wheelchair in the road, even though Portwood reportedly has nowhere else to be because of a lack of safe and accessible sidewalks. The judge declared that the city of Lancaster's failure to comply with the ADA was a separate issue.

Pharmaceutical companies lie for profit, children are given shock therapy, returning military vets are discharged without adequate health care.

And yet, the greatest example of disablism at work in the world today is this immoral war in Iraq that terrifies, maims, and kills while also destroying the existing social structure of supports that could help manage the everyday needs of Iraqi citizens. Maybe it sounds like a stretch to call civilian war casualties disablism in action, but what is disableist policy if not a policy that holds the lives, bodies and minds of others so cheaply?

What follows are 20 photos, mostly of Iraqi children.* Some are very hard to look at -- consider this a trigger warning. I've added my usual image descriptions for accessibility for all but they are limited to descriptions of what I see and lack specifics of time and place. Feel free to comment if you see something different in the images.











Image description: A young girl -- no more than three-years-old -- is in the foreground being carried by an adult. In the background, behind other people, are black trails of clouds from something burning. The girl is frightened and crying.












Image description: Under a sky blackened by sooty clouds, a tank follows a family that flees. A man and three children all hold hands as they move toward the camera. The background appears to be all desert. They carry nothing with them.











Image description: A close-up of a young girl facing the camera, her eyes brimming and wet with tears. In the background a military tank comes down the street.












Image description: A boy and girl, both perhaps age five, stand before a man in full military gear who runs a metal-detecting wand in front of the girl's chest. She stands with arms outstretched so the man can sweep her for explosives.













Image description: In the foreground, the torso of a man standing in full military gear and carrying a machine gun. In the background a child, perhaps four-years-old, sits, with both hands raised to cover her face.
















Image description: A young girl (maybe six?) sits cross-legged, arms wrapped to hug herself and cries, open-mouthed. A cinder block wall next to her is spattered with blood and just in front of her an adult lies in the grass, with only his feet and calves visible in the photo.
















Image description: A girl, maybe eight-years-old, sits cross-legged on a cushion, crying in anguish (and perhaps, pain) as she faces the camera. Her face and neck are spattered with blood, and the front of her pink shirt is wet with blood, as well.












Image description: A bearded man sits on a bed's bare mattress wearing only an undershirt and shorts. His feet are bare and dirty. He cradles a small child in his arms. The child appears to be unconscious and wears only an olive t-shirt and a white bandage over the top half of his head, with blood soaking through at the top.











Image description: A toddler lies on his back on a bed, his right arm covered in heavy white bandages and his shirt pulled up to reveal another bandage on his chest. He is crying.












Image description: A pretty girl (maybe eight?) lies on her side looking solemnly to the camera. The hand of her arm that lies along the pillow before her face is heavily bandaged.
















Image description: A girl, perhaps ten-years-old, lies stretched on a gurney. One hand is bandaged and the other holds a child's drawing. Her bare legs show serious, deep wounds, with about half of both her right knee and left ankle missing as if very large bites of flesh were taken from each.
















Image description: A child of three or four lies sleeping on her side, face nestled against the hip of an adult. Her left knee and foot are lightly bandaged, and the right leg is heavily bandaged from the top down to where it ends above the ankle.












Image description: A young boy lies, half-unconscious, with a bandage over his nose possibly holding a naso-gastric tube in place. His entire torso is covered in heavy bandages. In the background a woman sits keeping vigil.











Image description: A boy lays on a bare mattress, on his stomach but resting his upper body on his elbows. The white clothes he wears are all stained with blood, as are his hair, face and legs. He stares pensively off-camera.
















Image description: A man in Arab dress carries an unconscious girl past a jumble of bodies in the background. The girl's clothes are torn and a grotesque jumble of flesh and bone hangs where her right foot should be.
















Image description: A man carries a girl in a school uniform across a courtyard. She is crying and blood runs across her face, down her bare legs and across her sandals.











Image description: A close-up of a girl's face as she stares blankly toward the camera. While her eyes appear undamaged, the skin of her forehead, nose and cheeks is badly damaged, perhaps burned.
















Image description: Two women, one in a white medical coat and the other an older woman in Arab dress, stand over a toddler laying on a table crying. Heavy bandages cover the child's torso and crotch. The child's left leg is entirely missing.











Image description: A boy lies in a bed on his back. His heavily-bandaged left forearm is raised to rest across his forehead. His right arm ends a few inches below the elbow with the bare stump in the foreground. His torso is a mass of stitches and bandages, with a chest tube adhering to his right abdomen.












Image description: A boy lies in bed on a colorful blanket, conscious and trying hard not to cry as a hand wipes his cheek. A bandage is wrapped around his forehead. Both of his arms are almost completely missing, with the stumps in white bandages. His chest and abdomen are covered in what seems like a white paste, though the black burned skin is clearly visible beneath the salve.


*Given that these photos were mined from the internet, it's certainly possible they are not all of children in Iraq under the current occupation. But I found them on sites that presented them as such, and they are, if nothing else, all photos of children living under violent circumstances, many in the clear presence of military occupation that leads to their great injury and harm. My BADD post is late because I was trying to find mainstream media news sources for these photos that might include photo credit and caption info. That's proven difficult but I'll happily accept any info on any of these photos' origins that anyone might have.While these photos were at various sites, they were also grouped together at a site called Children of Iraq, where dozens of similar ones can be seen.

Girlcott of Seal Press

I've always intended to go back and review one of my favorite disability autobiographies, Connie Panzarino's The Me in The Mirror, which I read back when I was a teenager. But, you know what? It's published by Seal Press, a company that I cannot support or endorse at this time. Not even for Connie Panzarino, who was an amazing white, queer, disabled woman. I haven't found a good online reference on Connie that doesn't reference and quote the book, so I'm just not going to say that much more about her right now.

Someday I hope Seal Press sets this right and I can talk about an interesting book and an empowering woman. Connie Panzarino, that is.

Friday Music: Chavela Vargas

April 17, last week, was the 89th birthday of Chavela Vargas, the legendary Mexican-Costa Rican singer. My friend Penny Richards of Disability Studies, Temple U. moderates a mainly read-only Yahoo group, Born on this Date, that features one important woman in history each day. Here's what she wrote about Vargas:

"Una mujer tiene muchas vidas que vivir. Para hacer muchas cosas y romper parámetros como yo he hecho, hay que ser muy mujer. Después dirá."

[A woman has many lives to live. In order to do so many things and break so many limits, as I have done, one has to be very much a woman. At the end it will be told.]

--Chavela Vargas

Today on our homepage: Mexican-Costa Rican singer Chavela Vargas, born Isabel Vargas Lizano on this date in 1919, in San Joaquín de Flores, Costa Rica. She remembers having polio and being blind during her childhood, but says that she was cured by shamans. She left Costa Rica at age 14, and there she sang rancheras (folk songs) on the streets to earn her living for years. She wore a red poncho and smoked cigars, carried a gun and dressed as a man, to protect herself in such a visible and vulnerable life. She acquired a limp as a young woman--she says she jumped out of a window after disappointment in love.

In time, she became a popular cabaret singer in Mexico, touring the US and Europe, a favorite with the likes of Frida Kahlo (with whom she had an affair, she says) and Diego Rivera. Her stage shows were frank in their sexuality--she dressed in dashing men's clothing and sang songs of seduction to the women in the audience. In 1961, at the age of 42, the first recording of her music was released, Noche de Bohemia. She retired for health reasons in the 1970s, only to return to performing in 1991.

She released an autobiography, Y si quieres saber de mi pasado (And if you want to know my story...) in 2002. In it, she recounted a 15-year bout with alcoholism in the 1960s and 1970s. In 2003, she appeared at Carnegie Hall in New York, in a show introduced by Salma Hayek and promoted by Spanish film director Pedro Almodóvar, a friend. She has appeared in several of Almodóvar's films, and also in the recent biographical film Frida; she also appeared on the soundtrack of that film. She recently appeared in the film Babel, again as a singer.

She was awarded Spain's Great Cross of Isabela la Católica in 2000.

Today is Chavela Vargas's 89th birthday. She lives in Veracruz, Mexico.

She's on YouTube, here are just a few of the many clips there:

http://www.youtube.com/watch?v=duVaGM_JsME (a 2006 live performance)
http://www.youtube.com/watch?v=yQnNY8zMihs (a recent live performance)
http://www.youtube.com/watch?v=yuVjT2Rl7Bg (a 1998 performance for Spanish TV)
http://www.youtube.com/watch?v=0gQ31m4Yt0s (clip from "Frida")
http://www.youtube.com/watch?v=3bBRp-co68I (audio only)
http://www.youtube.com/watch?v=gqHh2U4TSJQ (audio only)
http://www.youtube.com/watch?v=XGESStAwS1k (slide show accompanies audio)
http://www.youtube.com/watch?v=cF6jEclOMcw (slide show accompanies audio)
http://www.youtube.com/watch?v=-mnZcErj-SA (slide show accompanies audio)
http://www.youtube.com/watch?v=6D2e8JMsTho (slide show accompanies audio)
http://www.youtube.com/watch?v=XAIF1IgiLeo (slide show accompanies audio of duet)

http://es.wikipedia.org/wiki/Chavela_Vargas
http://en.wikipedia.org/wiki/Chavela_Vargas
http://www.allmusic.com/cg/amg.dll?p=amg&sql=11:br63mps39f8o
http://www.afterellen.com/archive/ellen/People/2005/1/chavelavargas.html
http://www.afterellen.com/archive/ellen/People/2005/1/chavelavargas2.html

http://www.glbtq.com/arts/vargas_c.html

See also:

Yvonne Yarbo-Bejarano, "Crossing the Border with Chabela Vargas: Chicana Femme's Tribute," in Sex and Sexuality in Latin America (NYU Press 1997). A shortened version is online here:
http://www.lolapress.org/artenglish/chabe13.htm

Happy belated birthday, Chavela!

For another fan of Chavela's, Brownfemipower, whom I miss very much.

Check out Disability Blog Carnival #36

The latest Disability Blog Carnival is now up at Abnormal Diversity where the theme is Abuse. I submitted a post on something that happened to me about two years ago, and there's much more to read on the topic. Check it out.

The next Disability Blog Carnival will be on May 8 at CripChick's. The theme will be Disability Identity and Culture. From CripChick:

Here are some topic ideas!:
• What is disability identity? If you are disabled, do you feel disability is a part of you and your experience?
• What is disability culture to you? How do you put it out there or live it every day?
• Does disability intersect with your other identities (i.e. queer person, person of color, person of faith, etc.)?
• Is pride, community, or the Disability Rights Movement important to you? Why or why not?
• How do you feel about the word disabled? Is it a political term with power to you or do you despise it?
• Do you see disability outside of a rights framework (i.e. is disability something that is more than advocacy to you?)
• If you identify with the autistic acceptance movement, the deaf community, or other groups, how do you feel about disability? Many people do not want to associate with the disability community— how do you feel about this?
• Have you felt alienated [left out] from the disability community because of racism, exclusion because of your disability, the media or other factors? How has this affected your identity as a disabled person?

And some topic ideas for allies:
• Why is disability important to your work or politics?
• How do you feel about the Disability Rights Movement and what would you say to activists who downplay this movement or even disability as an important social justice issue?
• How do you see disability intersecting with feminism, reproductive justice [movement that focuses on ALL people having ALL control of their bodies], and other movements that work to end oppression?
• What do you see in your role as an ally?

CripChick also provides a list of resources for anyone wanting to bone up on the topic before participating. Deadline for submissions is May 4. The carnival submission form is available here, or leave a comment with your submission's link at CripChick's, or email her with the info at consciouslycrip [at] gmail [dot] com.

Other recent Disability Blog Carnivals have been at Reimer Reason on the theme of The Hardest Part, Andrea's Buzzing About on Breaking Out, Wheelie Catholic on Appreciating Allies, and Sunny Dreamer on Standing Outside the Fire.

Image description: The icon above, provided by CripChick for the upcoming carnival at her place is a color image of a self-portrait by Frida Kahlo with the words "DISABILITY BLOG CARNIVAL" in bold black type across the painting. The image is a close-up of Frida in her wheelchair from the 1951 painting "Self-Portrait with Portrait of Dr. Farill" described in detail in both English and Spanish here.

Cross-posted at Alas, A Blog

Participate in the 3rd Annual Blogging Against Disablism Day, May 1, 2008

It's time to be BADD!

Once again, the amazing Goldfish is sponsoring Blogging Against Disablism Day on May 1st. BADD is an annual event where disabled and non-disabled bloggers everywhere write about ableism, disablism and disability prejudice and discrimination.

Last year over 170 bloggers contributed. I've been proud to be a part of this the past two years and I can't wait to see what everyone has to say this year.

Details on how to participate are at Diary of a Goldfish, including a notice of Language Amnesty. Goldfish explains:

You can write on any subject, specific or general, personal, social or political. In the previous two BADDs, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with racism and sexism.

It's a good chance for allies to get their feet wet on a topic they might be hesitant to address, I think. Hope to see you there.

(Image description: The above logo for Blogging Against Disablism Day is one of several available --easy copy-and-paste code -- at Goldfish's. This one is a square divided into a headline naming the event and a grid of 20 colorful boxes, each featuring the simple shadow of a person, with one box showing a person using a wheelchair and one other person holding a cane.)

The Russian

On my first night at the rehab hospital, I was about as vulnerable as a person can be. I'd been in the ICU at a different hospital for a month. I had a new tracheostomy and was using it to breathe with a ventilator -- a new and frightening experience for me. I also had a new feeding tube, a PICC line, a catheter for urinating, and I'd barely been out of bed for that whole month.

I was weak and unable to speak. I communicated by writing on paper, which required the absolute cooperation of whomever I was communicating with. Basically, they had to consent to let me "speak" by handing me paper and pen, then waiting for me to write my message. (BTW, this procedure is the reason I am kinder to spelling errors -- my own and everyone else's. Spelling used to be a pet peeve. Ah, the luxury.)

Leaving the ICU, I chose between two rehab hospitals that I knew nothing about. My parents visited each and each sent representatives to meet me, "assess" me and lobby hard for me to choose their institution. I made a wild guess, choosing the hospital farthest from my home and requiring almost an hour's more commute each way for my parents as they came to see me most every day for the next three months.

It was the right choice. I ended up at place filled with amazing, dedicated people. But that first night was terrifying. And not just because of my own uncertainties.

I've got a knobby little tailbone that sticks out. I've never ever had a pressure ulcer (also called a "bedsore" or decubitus ulcer) anywhere on my body, including my tailbone, in part because I've spent quite a bit of time lobbying on it's behalf every time I put my body into strangers' hands, lay on a hard x-ray table, or require other people's assistance in keeping it healthy. For my four months in the ICU and rehab that meant an inflatable mattress on my hospital bed and frequent repositioning.

Sometime during my first night at the rehab hospital, I woke up needing help to roll over, a rather complicated process when I was so weak and had so very many tubes to avoid yanking. I rang the bell for help and a nurses' assistant showed up. I forget her name, but she had an accent so I'll call her "The Russian" as I did at the time to family and friends.

She understood I needed to be repositioned and she told me she needed to go get another person to help. It is commonly a two-person job in acute care settings and may even be required procedure, but when she didn't return and my butt began to ache badly from laying in one position too long, I rang the bell again.

The Russian returned alone to tell me she was trying to get help, then left again. I don't know exactly how much time passed, though it was easily 30 minutes since my first call for assistance, and it may have been as long as an hour. My butt was throbbing painfully now, sparks of nerve pain shooting down my leg. In desperation, I spent significant energy wrestling the pillow wedged behind my back away enough that I could shift slightly and ease the sharpest of pain to buy some time.

Shortly after, The Russian returned. Again alone. She saw the pillow had been moved and began berating me: "Why you bother me? You don't need help! You did this yourself after bothering me? If I catch you ever moving by yourself again don't expect me to do anything for you!"

I had no opportunity to tell her what I was thinking: "You will too frakking help me! That's your job! $ & % #*&!"

In order to reply, she would have had to agree to handing me my paper and pen, and she either didn't understand that's what I wanted or she purposely refused. It was a long fearful first night after that, not knowing if help would come if I needed it (for repositioning or breathing or whatever), and for the next many nights until I learned that her behavior was not typical of the institution or people working there.

In the morning when my parents arrived, I told them all about The Russian, writing the incident out for them in detail. I didn't take it further than that and neither did my parents.

Why? Because I didn't yet know if she ran the night shift, if others held her view and I was stuck somewhere where being the squeaky wheel might further endanger me. Because I was immersed in trying to get my primary doctor to hand me the paper and pen instead of telling me about my care and walking out the door. Because the speech therapy folks were busy giving me cognitive tests and asking things like if I knew where the window in the room was. Because in addition to my serious health issues I had one giant communication problem with getting people to treat me as an aware, active participant in my own recovery. Because the principle and all-consuming job in being an inmate in any institution is self-defense, just keeping well-meaning professionals from accidentally making you sicker.

My parents were equally immersed and could certainly have reported the incident, but when the abuse didn't recur, we all ended up focusing on the next most emergent issue. And there were dozens of them.

Was The Russian just having a bad night? Maybe. But I think she was hazing me. Three long months later, on the night before I came home, she stepped into my room to tell me what a pleasure of a patient I'd been. "No trouble." Compliant, she meant, of course. Less needy than other folks. There hadn't been a night for those whole three months that I hadn't been acutely aware of whether or not she was on duty.

The most disturbing part of this story is that I didn't tell her supervisors, right? I was conscious, had by wits about me (more-or-less), had caring family visiting daily, and knew at the time it happened that she was being abusive of her power over me. But this is how institutional abuse starts, why there is space for it to lurk even at excellent institutions. I was busy surviving and her behavior was only one of the many scary things I was subject to.

What would have happened if I had told her supervisors? Would I have been believed? Would I still have been subject to her care after essentially threatening her job? Were there a dozen other employees like her I just hadn't met yet who would hear I was "troublesome"?

What if I hadn't had any visitors to tell, providing, as my parents did, psychological assurance that further abuse could be responded to? What if I had been unable to communicate any of this to anyone, as was true for many of the people in rooms adjacent to mine?

Abuse doesn't really need much space to thrive, and it needs even less to occur only once. Probably not everyone would consider this abuse. But it was a verbal threat to deny me assistance while lying helpless in a bed from someone charged to show up if, say, my ventilator quit giving me air. Like any sort of intimate violence (domestic violence, date rape, etc.), violence against disabled people is contextual and opportunistic and can happen to anyone.

Spring: w00t!

This winter has been longer than I could stand, but spring seems to finally have taken over. The subzero weather and endless snow has kept me indoors much more than I expected, and I stopped blogging for a while there as a way of spending less time in my own head while cooped up indoors.

Thanks to the people who emailed me with concern for my absence here. I'm good, and I promise to not go missing again without noting I'm on hiatus.

Yeeeeaay!

This makes me happier than I can possibly say.

Planning health care in a disaster

From the Sacramento Bee:

Older, sicker patients could be allowed to die in order to save the lives of patients more likely to survive a massive disaster, bioterror attack or influenza pandemic in California.

It's not how nurses and doctors are accustomed to doing things, nor how Californians expect to be treated. But it is part of a sweeping statewide plan being praised for its breadth, even as it rankles providers who will have to carry it out.

The new "surge capacity guidelines" released by the state Department of Public Health, depict a post-disaster health care environment that looks and feels nothing like the system most Californians depend on.

It provides for scenarios in which patients could be herded into school gymnasiums for life-saving care or animal doctors could stitch up the human wounded and set their broken bones.

The 1,900-page document lays the practical – and ethical – groundwork for local and county health departments, hospitals, emergency responders and any able-bodied health care worker likely to be called upon in a catastrophe.

Striking in its specificity and its frank focus on the need to suspend or flex established laws and to ration health care, the plan is being hailed as a model for the rest of the nation.

You really need to read the whole thing to get a sense of how the plan would simultaneously limit patient protections and provide freer access to care.

Cross-posted at Alas, A Blog

Praying with Lior

I've heard good things about a new documentary film, Praying with Lior, only opening now in a few cities and playing primarily at Jewish film festivals. From the film's website:

An engrossing, wrenching and tender documentary film, Praying with Lior introduces Lior Liebling, also called "the little rebbe." Lior has Down syndrome, and has spent his entire life praying with utter abandon. Is he a "spiritual genius" as many around him say? Or simply the vessel that contains everyone’s unfulfilled wishes and expectations? Lior – whose name means "my light" — lost his mother at age six, and her words and spirit hover over the film. While everyone agrees Lior is closer to God, he’s also a burden, a best friend, an inspiration, and an embarrassment, depending on which family member is speaking. As Lior approaches Bar Mitzvah, the Jewish coming-of-age ceremony different characters provides a window into life spent "praying with Lior." The movie poses difficult questions such as what is "disability" and who really talks to God? Told with intimacy and humor, Praying with Lior is a family story, a triumph story, a grief story, a divinely-inspired story.

It sounds like this could go either way, right? The stereotyping of a child with Down syndrome as closer to God than the rest of us, an inspiration or a burden are themes on developmental disability we've heard many times before.

But filmmaker Ilana Trachtman's motivations as reported by Devorah Shubowitz at Media Rights reveal complexities behind the intent of the documentary:

As Trachtman struggled to focus during a Rosh Hashanah service at Elat Chayyim, a multi-denominational Jewish retreat center in the Catskills, she was mesmerized by the soulfully attentive off-key voice that came from behind her. When she saw the source, a boy with Down syndrome, she was shocked. Lior's praying shattered her expectations of what people with disabilities can do. "He amazed me. He could do something that I can't do -- pray with real concentration in Hebrew and in English. So I stalked him because of my own spiritual curiosity." When Trachtman heard Lior was going to have a Bar Mitzvah, she thought somebody should tell his story on film and shortly after, she decided to be that person....

Audiences may debate whether this photogenic young person's "star quality" sets him apart from other people with disabilities. Some may argue that Lior's integration is dependent upon his recognition by and attractiveness to non-disabled society. Others may think his charisma is connected to his disability. The film certainly brings to the foreground issues of the aesthetics of disability, and non-disability, in film.

Another review at Cinematical also suggests that disability is just one (important) facet of this complex family story about love and religious faith.

Cross-posted at Alas, A Blog

Update: Casting director fired from "Shelter" flick

According to the AP:

A casting director for the horror thriller "Shelter" has been fired after West Virginia Gov. Joe Manchin's office objected to what it termed an insensitive casting call for extras with unusual features that might look inbred.

Donna Belajac Casting's Web site initially advertised the scene as being set in a "West Virginia 'holler,"' but producers Emilio Diez Barroso and Darlene Caamano Loquet said the movie is not set in West Virginia and the state will not even be mentioned.

"On behalf of the entire SHELTER production we regret and are deeply sorry for the very insensitive casting call sent out without our knowledge by our casting director Donna Belajac who has been dismissed from this project as a result," Barroso and Loquet said in a statement issued Tuesday night.

I don't care one way or another about Belajac's firing. It's not a victory for disability awareness if all the brouhaha was because it was offensive to suggest people of a geographical region all look abnormal or disabled. It was the association with abnormality everyone was upset about, not any assumptions about the worth of people who aren't picture perfect.

The movie studio will hire someone careful to not attribute the abnormal "inbred" look of its scary characters to a particular place, and we're all supposed to be placated by that. Rest easy. Be assured that the scary folk in the movie are not "us" and we are not "them."

See previous post here.

Pedro Guzman sues government

From the AP story:

"I will never forget what Peter looked like when he finally returned to the U.S. — exhausted and in terrible shape," said Guzman's brother, Michael. "Peter's life is forever changed by what his government did to him."

His lawsuit, which seeks unspecified damages, was filed in federal court in Los Angeles by the American Civil Liberties Union on behalf of Guzman.

"Not only does Peter and his mother want some vindication, they want to make sure immigration officials understand they can't do this," said attorney Jim Brosnahan, who represents Guzman. "They should have apologized and said they would take steps to make sure this doesn't happen again."

A statement released by Immigration and Customs Enforcement, a branch of Homeland Security, called the incident a "one-of-a-kind case" and added more than 1 million illegal immigrants have been deported since the agency's inception.

See other posts on Guzman here and here.

Cross-posted at Alas, A Blog

Latimer paroled

Through the appeals process, the decision to deny Robert Latimer parole has been overturned:

After seven years in prison for killing his severely disabled daughter, Robert Latimer will be freed on day parole this week.

The appeal division of the National Parole Board this afternoon overturned a parole board decision last December that rejected Mr. Latimer's bid for parole.

The appeal division, following a month-long review, concluded Mr. Latimer does not in fact pose an undue risk to reoffend.

....

In its decision in December, a three-member panel of the parole board concluded: “You could not or would not describe the feelings or thoughts underlying your actions at the time of the offence.... You appear satisfied with the position that you and only you were able to determine her life or death, describing such decisions as beyond the law.”

The appeal division, however, found that although Mr. Latimer was at times unfocussed, he was not unwilling to answer their questions.

“The Appeal Division finds that the Board's determinations in this regard are unreasonable and unsupported. Your responses at the hearing reveal that you did in fact demonstrate insight and were able to explain why you decided to end the life of your daughter.

The appeal division has applied two conditions to his parole: Mr. Latimer cannot have responsibility for, or make decisions for, any individuals who are severely disabled.

See previous post on Latimer here.

Cross-posted at Alas, A Blog

Hollywood casting call for that "inbred" look

From the Pittsburgh Tribune-Review (bolded italics are mine):

The announcement -- which was sent out in a news release and posted on the casting company's Web site -- asked for people with the following attributes:

"Extraordinarily tall or short. Unusual body shapes, even physical abnormalities as long as there is normal mobility. Unusual facial features, especially eyes."

The announcement requests "a 9-12-year-old Caucasian girl with an other-worldly look to her."

"Could be an albino or something along those lines -- she's someone who is visually different and therefore has a closer contact to the gods and to magic. 'Regular-looking' children should not attend this open call.'"

Asked if she felt the characterization might be offensive to West Virginians, [Donna] Belajac [of Donna Belajac Casting] said: "We tried to word it in a way that's not offensive. I hope it's not an offensive thing. It's not meant to be a generalization about everyone in West Virginia. That's why we put that it's in a 'holler' in the mountains."

....

"It's the way it was described in the script," Belajac said Monday. "Some of these 'holler' people -- because they are insular and clannish, and they don't leave their area -- there is literally inbreeding, and the people there often have a different kind of look. That's what we're trying to get."

Belajac said the announcement was not meant to stereotype people from West Virginia. But state officials and a history professor called it "unfortunate" that such unfair views of people are being repeated.

"They clearly are not trying to create the image of a quaint, homespun mountain family," said Kevin Barksdale, assistant history professor at Marshall University in Huntington, W.Va. "Clearly, what they're trying to establish is this notion of the hillbilly monster."

The above casting call is for an upcoming horror film called "Shelter" starring Julianne Moore.

The following one is for a movie version of Cormac McCarthy's The Road starring (ATTN: Brownfemipower!) Viggo Mortensen and Charlize Theron:

It's set in a post-cataclysmic America. The few survivors who were not seared by an unspecified fiery disaster are divided into two classes -- barbaric cannibals or their prey.

Men and woman ages 18 to 50 are needed for eight speaking roles and 30 extras.

Producers are looking for people with minimal muscle tone, long stringy hair and a starved, ravaged appearance. They need men capable of growing a full beard.

Also needed: a thin man of any ethnicity who is missing one or both legs. No previous acting experience is needed for this role.

I have a deep, unnatural love for post-apocalyptic fiction, and I recently read McCarthy's Pulitzer-prize-winning novel and found it as riveting as anything I've ever read. I think McCarthy is the great American author living today, and at least one character in another novel of his has had provoking things to say about disability/deformity. (That excerpt from All The Pretty Horses was one of my 2006 blog posts.)

Regarding these casting calls for the unusual, extraordinary, irregular and inbred, I certainly don't have any problem with disabled actors being part of Hollywood. Bring them on, please. But give them roles with humanity and lives beyond their physical attributes.

The movie "Shelter" is clearly working on the theory that physical oddballs and country hicks are effective monsters that provoke horror for their film. When will we get over this? When will the insult of collecting unusual-looking people be seen as complicated and problematic in and of itself and not just because it might suggest insulting things about a geographical region or particular tribe of people?

Notice also, the odder the better, so long as you have no trouble with mobility. That's pretty specific. What's that about? My guess is they've fine-tuned their idea of the grotesque to mean physically strange, but they don't want any mobility aids distracting from the impact of that strangeness. Or maybe they need creepy people capable of chasing the star?

Thanks to Grace for providing the link to the news article.

It's an honor. . .

Over at A Creative Revolution, The Gimp Parade has been nominated for a Canadian F-Word Blog Award under the category of Best International Feminist Blog. (Thank you, Matt Bastard for the nomination.)

Disability blogs and the blogs of many of our great allies are well-represented throughout the categories. Competing with me in the same category, for example, are Bint's My Private Casbah, Daisy's Dead Air, As The Tumor Turns (Lymphopo/Grannie has kicked cancer's ass so seriously she's decided she doesn't need to blog about it anymore for now, btw), and Ms. Crip Chick, as well as many other people I love and blogs I love to read. Elizabeth's Screw Bronze! is nominated under Individual Blogs.

The first round of voting is now -- February 15-16. The final round of voting will be February 22-23 with winners announced on the 24th. To vote, go to the main nominations page and follow each link on the right sidebar to vote in each category.

And while you're over there, check out A Creative Revolution's fundraising initiative for WISE:

WISE (Wellbeing through Inclusion Socially and Economically) is one of many organizations who have been mightily screwed by Canada's Eww Government's cruel and unnecessary cuts to the SWC, because of the need to toss some raw meat to their socially conservative, classist, anti-woman base. WISE needs your generous help more than ever to continue providing leadership, training, awareness, and advocacy for low income women across Canada.

We know that you would help women in need out of the goodness of your heart - there is no doubt about that. However, to sweeten the deal, we have added a super-fantastic raffle which will entice you to give more!

Many disabled women are in the low income category of women WISE seeks to assist, of course. If the joy of voting for some of your favorite bloggers doesn't encourage you to make a small donation, maybe ACR's prize to the winner of a raffle for donators will get you interested: "It's a pair of fabulous, bodacious, hand-knit Teutonic Titpillows!" (Visual description of the image at the fundraising post link: Just what you might imagine. Two hand-knit plump-but-perky white-girl boobs.)

Cop dumps quadriplegic man out of his wheechair

The story:

Police Suspended for Wheelchair Dumping

TAMPA, Fla. (AP) — Four Hillsborough County sheriff's deputies have been suspended after purposely tipping a quadriplegic man out of his wheelchair at a jail, authorities said Tuesday.

Orient Road Jail surveillance footage from Jan. 29 shows veteran deputy Charlette Marshall-Jones, 44, dumping Brian Sterner out of his wheelchair and searching him on the floor after he was brought in on a warrant after a traffic violation.

Sterner said when he was taken into a booking room and told to stand up, Jones grew agitated when he told her that he could not.

"She was irked that I wasn't complying to what she was telling me to do," he told The Tampa Tribune.

"It didn't register with her that she was asking me to do something I can't do."

Jones has been suspended without pay, and Sgt. Gary Hinson, 51, Cpl. Steven Dickey, 45 and Cpl. Decondra Williams, 36 have also been placed on administrative leave pending an investigation, sheriff's spokeswoman Debbie Carter said.

"The actions are indefensible at every level," Chief Deputy Jose Docobo said. "Based on what I saw, anything short of dismissal would be inappropriate."

He said the officers' actions were an aberration.

Yes, just another story documenting the callous abuse of power by law enforcement. Unbelieveable, but... not, right?

But it's also an example of how inept the media is at covering disability. The Associated Press headline: "Police suspended for wheelchair dumping"

"Wheelchair dumping" is ambiguous, obnoxiously imprecise, and goes for the shock value at the expense of even mentioning the victim involved. "Man dumped from wheelchair by cop" would have preserved the news shock value while also speaking the truth.

In any case, "wheelchair dump" has another meaning. "Dump" (also known as "rake" or "squeeze") refers to the seat angle on a wheelchair. To a seasoned wheelchair user, a story titled "wheelchair dumping" suggests discussion of the intricacies of butt comfort, balance, and leverage to push oneself. To a wheelchair user, the headline is not only insulting, it makes no sense.

The video of the abuse shows the police officer walking behind the man in the wheelchair and abruptly tipping the chair forward so the seat is at much more than a 45-degree angle from normal. Sterner attempts, briefly, to hold onto the arms before falling forward head first and landing hard on the floor. He is then rolled around on the floor and searched before being placed roughly back in his chair. The TV news report showing this video includes footage of Sterner outside, wearing sunglasses and using his arms and hands with some difficulty. He explains to the news camera that he has no feeling from the chest down and did not know at first how badly he was injured from the fall, but thought he might have broken some ribs.

RIP BrainHell

BrainHell died yesterday. He was a husband and father of two on an inevitable journey with ALS.

Image description: A color photo taken by the subject, his arms outstretched to hold the camera for a head-and-shoulders shot. He's a man in his 40s, dark hair, intelligent brown eyes with very arched brows. BrainHell wears a dozen electrode sensors on his forehead, ears and in his hair, with a halo of multi-colored wires encircling his head.

He was honest. Insufferably honest, sometimes. He used his blog to record random personal thoughts and childhood memories, share frustrations about his failing body, provide instructions for his nursing care as his ability to communicate became more difficult, leave love notes to his family, and express anger too.

I was an inconsistent but devoted reader of his blog, and to my knowledge, he never specifically wrote about "disability rights" or "crip culture," but he lived the experience and shared it organically, apolitically. Just two weeks ago, a typical BrainHell entry on the tricky dynamics of intimate personal assistance:

he started out being my best night caregiver. he calls me 'the best in the west' sans irony, and agrees when i say i respect him and would never play games. but once i am helpless in bed, his anger mounts as he accuses me of ringing the bell to toy with him. it frightens me. l wonder if he knows that when he does this, he is acting like the mean rich people told me about. i want to work with him, not ask the agency for someone else.

BrainHell wrote often about inadequate care but, as with everything, he never really bothered to return and provide closure of any kind to the problems or speculations he shared with readers. He was writing about uncertainty anyway, and it would have been an indulgence to readers if he had. I don't believe that was his style.

His Amputation Derby entry of about three years ago seems especially poignant now:

Here's a fun game: what body part would you be willing to part with in exchange for being thereby cured of ALS?

You might think I'd give up an arm and a leg quite happily so that I would not DIE! But people are always trying to get the best deal for themselves, always scheming and calculating...

See, I have this gut feeling, perhaps totally foolish, that I will live long enough to witness a treatment that will stop the progression of the disease.

So, since a stop-cure is coming anyway, why lose a foot over it? OK, actually, maybe losing a foot today would be worth it because, who knows, in five or 10 years when the cure comes around, I may no longer be able to stand up. So yeah, in that case, it might be worth it.

I would never have described him as an optimistic guy. He wasn't hopeful -- just living fully within the grim uncertainties of ALS.

For some time now, his blogging has been brief, often riddled with uncorrected typos, and less frequent. His last words for us, offered posthumously:

ok i'm dead. so what? i partook of much wonder and beauty. you should be so lucky!

We were lucky to have known a bit of him. RIP BrainHell.

Read Bint's memorial.