Showing posts with label heroes. Show all posts
Showing posts with label heroes. Show all posts

Monday, March 30, 2009

Sara

There are those people online that you never get to meet but suspect could be your very best friend if they only lived closer. I tend to work them into daily offline conversations sometimes, with references that don't sound as strange as they used to ten years ago: My Friend From Chisago County (only she doesn't live in Chisago County anymore), SuezBoo in South Africa, The Dancer in NYC, Sara in Massachusetts (you know, the one who takes photos of love potatoes).

You hope to travel, meet for lunch. You trade notes and laugh out loud, long-distance, at their clever crush-worthy minds.

You are heartbroken when you finally understand that the small portion of their greatness that you already got to see is all you will be so lucky to share.

Tuesday, November 04, 2008

Swallowing the world

"I set out," [Terkel] said, "to swallow the world."

Robin at Writhe Safely has a beautiful tribute to Studs Terkel. Go check it out, especially if you're bored with election news. Terkel is a fitting alternative on this day when everyone gets to speak their mind.

"If I did one thing I'm proud of, it's to make people feel that together, they count," he said last year.

Wednesday, June 04, 2008

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

Friday, April 25, 2008

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.

Sunday, February 03, 2008

RIP BrainHell

Self-portrait photo of BrainHell in bed with a dozen electrode sensors attached to his head













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.

Thursday, November 08, 2007

Marian Elaine Myers

I wish the internets had been big back in the '80s so there'd be an online record of Marian, my best friend in college. My first roommate away from home. My mentor in being a disabled girl out in the world.

She died 18 years ago today.

She was waiting for me when I arrived at the dorm with my mother and a breathless freshman naiveté. She was excited to meet me and become friends. She taught me how to ride the public buses with their brand new wheelchair lifts and ignorant drivers. She introduced me to crip culture. She was my best friend. She was hilarious and wise.

Her life had always been hard. She never knew her birth father, he'd left Marian's mother alone and in poverty. When Marian's juvenile rheumatoid arthritis became critically expensive, Michigan's child protective services took her away from her Mom and siblings and stuck her in foster care. Some homes were good, some were cruel. She spent time in hospitals and at Easter Seals camp. She almost died in a house fire once.

At 16, some kind neighbors apparently helped her just leave the unhappy home she was in and fly across the country to her mother, siblings and a new step-dad. Well, she always described it as a flight, an escape. She was emotionally intense. She'd learned early that you have to hold tight to the ones you love.

This dreamy blind guy once carried her up "A mountain" -- the very large rocky desert hillside bordering campus -- to watch an Arizona sunset. She was a semester away from getting her psychology degree when she died. She was going to counsel troubled teens. Someday she planned to have children. She'd already outlived all life-expectancy estimates, but she had big dreams.

She was generous and thoughtful. She entered the hospital on my 21st birthday and died there three weeks later on November 8, 1989. She left behind birthday presents she hadn't had a chance to give me, and already-wrapped Christmas presents for many people, anticipating the holidays.

She never lived to see implementation of the ADA.

I didn't take many pictures. I didn't know how little time we had. But this is Marian in our dorm room (my sophomore, her junior year) preparing to brave an Arizona monsoon rain (yes, she's sitting in front of that closet door). She's a short blond woman sitting in an Everest & Jennings motorized chair wearing one of those clear plastic "scarfs" over her hair and a white trash bag over her lap. The sink and closed door of our dorm room are behind her, with a life-sized poster of Patrick Swayze on the door.

And these last two photos were taken exactly one year before she entered the hospital. My 20th birthday. She gave me the stuffed purple dinosaur, Sam, and took me to dinner while other friends toilet-papered our room. We're with Anne, from that "pickle for three". In the first photo, Marian smiles at the camera. She's wearing a light blue tie-dyed t-shirt dress and holding my stuffed dinosaur, which has a toilet paper bow around it's neck. My bed behind her has a pink quilt and posters on the wall above it including one of Sting and one that says "Peace".

In the second photo, Anne, Marian and I sit at a restaurant table with glasses of wine and happy smiles. Anne is a tiny woman sitting in an Amigo scooter. I've got Veronica Lake hair and an embarrassingly large turquoise bolo necklace. I'm also drinking in a restaurant while underage because no one had the nerve to card a bunch of noisy women in wheelchairs.

I cannot believe it has been 18 years. I was so alone at college after she died that I nearly dropped out. For better and worse, my undergrad years were, emotionally, all about my friendship with Marian. Her joyful friendship, clingy intensity, illness, and the enduring grief.

She's so far away. So close. I often forget this anniver- sary. It was a sunny day when the painful vigil ended. My October birthday, her first day in the hospital and away from me forever, was the day I really lost her and the day I truly started to become an adult. This is pretty maudlin, but I haven't thought deeply about Marian for a while now, though she was clever enough that my family quotes her frequently. Even when I don't mention her name, she's a presence everywhere on this blog.

Wednesday, November 07, 2007

The wild life

It feels like winter coming here at the Gimp Compound. This past weekend, my father put up his little hand-turned wooden dish bird feeder and set out the winter birdbath on the back deck, which has been cleared of patio furniture for the season. The hand-turned feeder is about an eight-inch dish attached to a two-foot dowel and hung from the edge of the eave just outside the picture window I face when I enjoy my morning tea. The winter birdbath is heated, and wasn't plugged in at first, but the water froze solid yesterday, so it's a little birdy hot tub now.

The winter bird accommodations bring the wildlife right up to the picture window instead of 15 feet out at the oak tree bordering the back deck, though the suet feeder gets attached to the tree trunk for the winter and will become a popular lunchtime destination too. The past couple days there've been chickadees, nuthatches, juncos, downy woodpeckers, sparrows and finches at that little feeder a few inches from the glass. They eat a bit, then notice the shape of me through the window at a table about five feet away and they stretch and tip their heads to focus an eyeball in my direction with curiosity and concern. And they chatter to each other. Drive the cat wild inside. The squirrels look for dropped seeds under the feeder and sit eyeball to eyeball with the cat while she twitches uncontrollably.

Last week, the pileated woodpecker came to see if the suet was up yet. It wasn't. I sat with my tea, frozen motionless, while the massive 15-inch male crept up the tree trunk, peered with paranoia all around, then resignedly flew away. And today there was squirrel sex. Lots of it. In the oak tree, in the neighbors' oak tree up high -- a hundred feet off the ground. Much exuberant molesting of each other throughout the afternoon.

Life inside the picture window is much duller. Me, I'm exhausted from a night spent training a brand new nurse. All went great, but I never sleep well the first few nights with someone new around, so I'm tired and off to bed early tonight.

But check out my friend Grace's post on Wilma Rudolph. Wilma was my first hero. I read her autobiography when I was in grade school, and long before I identified as disabled or used a wheelchair I thought she was the most amazing person on earth. I'll do tomorrow's post now too, early, about another hero of mine.

Saturday, November 03, 2007

Nobel laureate James Watson and the big liberal tent

Last month, scientist James Watson, who won the Nobel back in 1962 for his work in understanding the Double Helix structure of DNA, was busy apologizing for his remarks that Africans are less intelligent than other folks. Undercover Black Man reports this isn't even the first time this year the 79-year-old has been compelled to backpedal and apologize for offensive comments. Actually, he's got the sexism, homophobia and ableism going just as good as the racism, as noted in a Washington Post column by Michael Gerson:

In 2003, Watson spoke in favor of genetic selection to eliminate ugly women: "People say it would be terrible if we made all girls pretty. I think it would be great." In 2000, he suggested that people with darker skin have stronger libidos. In 1997, Watson contended that parents should be allowed to abort fetuses they found to be gay: "If you could find the gene which determines sexuality and a woman decides she doesn't want a homosexual child, well, let her." In the same interview, he said, "We already accept that most couples don't want a Down child. You would have to be crazy to say you wanted one, because that child has no future."
So let's just look at Watson for a moment. He's Mr. DNA. He was the head of the Human Genome Project, the mapping of our genes to determine which genes cause which traits, variations and health conditions. He's the guy who was in charge of discovering the most basic information about how human beings differ from one another. And his opinions about those differences? Africans lack intelligence, girls should be designed to be pretty, dark-skinned folk can't keep their pants zipped, and there's no problem or social loss to identifying and eliminating gay people and those with Down Syndrome before they're ever born.

These ideas Watson has about whose genes are good and whose are inherently bad are not random and unconnected. And I suspect it's also no coincidence that everything he's not (African, female, gay, developmentally disabled) falls short of being equal or worthy.

Gerson notes:
Watson is not typical of the scientific community when it comes to his extreme social application of genetics. But this controversy illustrates a temptation within science -- and a tension between some scientific views and liberalism.

The temptation is eugenics. Watson is correct that "we already accept" genetic screening and selective breeding when it comes to disabled children. About 90 percent of fetuses found to have Down syndrome are aborted in America. According to a recent study, about 40 percent of unborn children in Europe with one of 11 congenital defects don't make it to birth.
I don't know exactly how atypical Watson's beliefs are, but they're not as rare as Gerson indicates -- especially with regard to Down Syndrome and abortion. Gerson continues:
No one should underestimate the wrenching challenge of having a disabled child. But we also should not ignore the social consequences of widespread screening of children for "desirable" traits. This kind of "choice" is actually a form of absolute power of one generation over the next -- the power to forever define what is "normal," "straight" and "beautiful." And it leads inevitably to discrimination. British scientist Robert Edwards has argued, "Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease." A sin. Which leaves disabled children who escape the net of screening -- the result of parental sin -- to be born into a new form of bastardy and prejudice.

This creates an inevitable tension within liberalism. The left in America positions itself as both the defender of egalitarianism and of unrestricted science. In the last presidential election, Sen. John Kerry pledged to "tear down every wall" that inhibited medical research. But what happens when certain scientific views lead to an erosion of the ideal of equality? Yuval Levin of the Ethics and Public Policy Center, a rising academic analyst of these trends, argues: "Watson is anti-egalitarian in the extreme. Science looks at human beings in their animal aspects. As animals, we are not always equal. It is precisely in the ways we are not simply animals that we are equal. So science, left to itself, poses a serious challenge to egalitarianism."

"The left," Levin continues, "finds itself increasingly disarmed against this challenge, as it grows increasingly uncomfortable with the necessarily transcendent basis of human equality. Part of the case for egalitarianism relies on the assertion of something beyond our animal nature crudely understood, and of a standard science alone will not provide. Defending equality requires tools the left used to possess but seems to have less and less of."
Gerson apparently equates science with liberalism, and that correlation would be an interesting side debate, I suppose, though Watson certainly isn't sitting at the same progressive campfire as I am. Given his record, lets not pretend that Watson holds the liberal view of egalitarianism in any special esteem. Why does Gerson focus his criticism on liberalism? Possibly because the prejudices of the right are usually obfuscated by the anti-choice stance that does appear to accept developmental disability (and gayness and race) as part of the glorious diversity of human life, until it comes to funding things like special education or Head Start. Prejudices on the left can be seen as simple hypocrisy, something much easier to point a finger at.

Gerson says the "temptation of eugenics" involves a reductionism of individual human value into the tangible or quantifiable. While his point is an important one, and one I find especially important as a disabled feminist, he's reductionist himself in the way he shrinks the messy real-world issues of reproductive justice and choice for women into wobbly liberalism. And using Watson and his history of both scientific excellence and ideological bigotry to batter science and liberalism together is a cheap partisan strategy that fails to support the very people he criticizes Watson for devaluing.

h/t to Justice for All

Thursday, September 13, 2007

One more photo

These group action pics give me happy chills.

Dozens of ADAPT protestors rolling single-file toward the headquarters of the AMA.

Image description: From observer rachelleb, this color photo is taken from several stories above the street of dozens of ADAPT protestors , mostly in wheelchairs, in the far right lane of Chicago's State Street rolling single-file toward the headquarters of the AMA this past Monday.

I think it's safe to say. . .

Dozens of people in wheelchairs filling a city sidewalk and the entrances to a union office building.that folks in wheelchairs have the edge in creating successful sit-in protests. Not that it's all about sitting around, but we do bring extra immovable objects with us everywhere we go. Immovable if we choose to make them immovable, that is.

This post is to notify feed readers of updates to the post just below on the ADAPT actions this week in Chicago. Specifically, the local Chicago TV news coverage links at the bottom of that post should be easier to access now.

Here's another video, this one from Chicago's Fox TV on Tuesday's protest and blockade of the Thompson Center.

The image above is another photo from Tim Wheat, showing dozens of people in wheelchairs filling a city sidewalk and the entrances to the offices of the American Federation of State, County and Municipal Employees (AFSCME), a union that persists in putting their members' incomes above the freedom of the disabled people housed in the institutions they serve. You can read Tim Wheat's diary of Wednesday's events at the ADAPT site.

Also check out the blog coverage of Galen Smith, an activist at his first ADAPT actions. He writes of Wednesday's action against the union:

We got periodic updates from our negotiators and learned that it was not going well. First AFSCME tried to counter the letter we gave them with a letter of their own. They expected us to sign a letter saying that nursing homes should stay open!! Then they said they would call their national office. Eventually they left the table and said they weren't coming back. When negotiations broke down the police moved in to start arrests.

AFSCME had 120 ADAPTers arrested today - for picketing. The irony was not lost on us as we chanted...

The People United Will Never Be Defeated!

...a chant that has long been used by striking unions.

The arrest process extremely relaxed. An officer approached me where I was standing blocking the alley and warned me that if I didn't move I would be arrested. I didn't move. Then he told me to follow the line of people heading for arrest. There was no police escort as we walked about a block and a half to line up on a sidewalk and wait for our citations. ADAPTers chatted with the officers as they wrote up our citations who laughed and joked with us. When the officer handed me my ticket he smiled and said, "You've been very bad. Here's your ticket" as he patted me on the shoulder and sent me on my way with a chuckle.

Wednesday, September 12, 2007

Updated: ADAPT action in Chicago

"Individually, no one's more invisible
than a person in a wheelchair.
Collectively they're pretty spectacular."

Source

How totally exciting and energizing is this?

Two disabled women at the protest outside the headquarters of the AMA.

Protestors, mostly using wheelchairs, block a revolving door.

A woman writes

A man surrounded by other wheelchair-using protestors chants.

Image descriptions: The four photos taken by Tim Wheat are part of ADAPT's coverage of the week's events here. The first is of Marca Bristo, CEO of Chicago's Access Living (the ILC) and former chairperson of the National Council on Disability, in a power wheelchair holding a Chicago Sun-Times newspaper layout of coverage from a 1992 protest where the large headline reads "Disabled take home-care protest to AMA's doorstep." She sits next to Laura Hershey, Denver writer of Crip Commentary, also in a power wheelchair outside the American Medical Association's headquarters in this 2007 protest.

The second photo is inside a building, taken from above, showing a half dozen activists blockading the entrance. Some people are sitting in power wheelchairs and scooters, many wear ADAPT t-shirts.

The third photo is outside the AMA headquarters. A woman is writing "Community Choice" on a large glass window with a red paint marker and activists are visible lining the outside of the building along the glass in the background. The Community Choice Act, Senate Bill S. 799 and House Bill H.R. 1621, seeks to break the institutional bias by using existing funding that now pays for nursing home coverage to provide the choice of community-based services instead.

The fourth photo shows a man, surrounded by other wheelchair users, chanting or hollering. In comments below, it's suggested he's also signing as he chants. Perhaps the sign for "Now."

From ABC Chicago channel 7: "Disability activists wrap up week of Chicago protests" (video at link too):

- Hundreds of activists for the disabled protested again Wednesday in downtown Chicago, demanding better housing conditions. They are angry with Illinois government officials for spending too much money sending the disabled to nursing homes.

Wednesday was the last day of what Adapt calls its fall action. The disability rights group has targeted medical and governmental agencies since Monday in its push for access to more community-based services.

Hundreds of members led a vocal call for change to the system that they say gives them only one option - care in an institution.

Members of Adapt parked their wheelchairs in front of the Chicago headquarters of the American Federation of State, County and Municipal Employees Union, at 29 N. Wacker.

They blocked the entrances and crowded into the lobby in a demonstration over housing options for people with disabilities.

"Everyone deserves a choice and right now, choices don't exist," said Gary Arnold of Adapt. "It's institutions or nursing homes or nothing for thousands of people."

Adapt is fighting for the Community Choice Act, a bill introduced to Congress earlier this year. It would allow patients with disabilities to access care in and around their homes, rather than rely on care from a nursing home.

Chicago's WGN covered the week's activities in video. The three individual clips cover the protest at the headquarters of the AMA and the shutdown of the Thompson Center. Here, here and here. Those links should work (for me, each opens three windows: the main WGN page, a WGN video troubleshooting page and the actual news video in Windows Media Player, preceded by a 20-second ad). Let me know if that doesn't work for you, please.

Update: I've added some info about the people in the above photos to the in-text image descriptions since commenters have helpfully identified the activists. Also, the links to WGN videos just above should now be a little easier to access, thanks to Stephen Drake of NDY (Check the Not Dead Yet blog for day-by-day coverage of the events and additional photos. Steve has been my source for all the links in this post, along with ADAPT itself.)

Tuesday, September 04, 2007

Another insult and apology

From the Washington Post. Jerry again, during yesterday's telethon:

The 81-year-old showman -- prowling about the stage during the live telecast Monday in Las Vegas -- was goofing around and dodging his cameraman, then went into a ramble about imaginary family members.

"Oh, your family has come to see you," he said, speaking to the camera and gesturing toward thin air.

"You remember Bart, your older son," he said, and motioning toward another unseen character, "Jesse, the illiterate f-----.

"No," Lewis said, quickly stopping himself before continuing.

Jesse is, apparently, the gay relative. I'm guessing he rarely comes to Lewis' imaginary family functions when the bigot himself is there. After all, Bart gets to be "the older son" and he is, well, illiterate. . . .

Here's CNN with the video clip. I can't imagine what he'd have said when he got to the sad, crippled little imaginary grandchild with MD.

Wait. Yes, I can.

But it all seemed to work out well for everyone in the end.

Gay & Lesbian Alliance Against Defamation (GLAAD) President Neil G. Giuliano criticized Lewis this morning:
“Jerry Lewis’ on-air use of this kind of anti-gay slur is simply unacceptable,” said Giuliano. "It also feeds a climate of hatred and intolerance that contributes to putting our community in harm's way. Our nation’s media have done an admirable job this year holding public figures accountable for their use of anti-gay slurs, and I hope they continue to do so with Mr. Lewis."

Giuliano said that GLAAD is contacting Lewis’ representatives today to request a meeting with him. "We want to sit down with him, help him understand why these words are so hurtful, and give him an opportunity to raise public awareness about the destructive impact of these kinds of anti-gay slurs, even more so in attempted humor.”
And by this afternoon, all was forgiven after Lewis issued an apology for a "bad choice of words."

GLAAD responded:
“GLAAD thanks Jerry Lewis for his swift and direct apology for this incident,” stated Giuliano. “We join millions of Americans in applauding the important work of the Muscular Dystrophy Association and wish MDA and Mr. Lewis much continued success in their efforts.”
Whew! I'm happy that's over!

He didn't mean it. He's a nice guy. He would never purposely say anything rude about cripp-- I mean, gay people. Everyone carry on! Nothing to see here but a little annual nationally-televised pity party for some dying kids.

Sunday, September 02, 2007

Back

So, it was actually a lousy vacation. I've spent the bulk of my time with ugly digestive complaints or working through the various management issues of having a home health care agency up in my life 24/7. Or both. But anyway, there was good amidst the bureaucratic busy-ness and grumpy misery. Two highlights of my August were a family gathering in the far reaches of western Minnesota and meeting Brownfemipower while she was in St. Paul for the MALCS conference*.

The Gimp Compound inhabitants met with a dozen other Olsons, including the French branch of my cousinry, in the little city of Montevideo. We shared the courtyard of a great little coffeeshop with a local family where a father and a newborn son spent a few precious hours together while the former was briefly home on leave from Iraq. Poignant, that.

Brownfemipower and I met in the union of the University of Minnesota while my parents wandered around sucking up massive doses of alumi nostalgia. Like everyone I've met in person after getting to know online, BFP is just exactly herself, but more. One of the things we talked about was what candidates would be good for a Radical Hot Off of disabled celebrities. It shouldn't be, of course, but the question is deeply problematic: Mainstream celebrities people would be familiar enough to vote on don't celebrate their disability if they have one, disability is stereotypically seen as the antithesis of sexy, and iconic or noteworthy disabled characters in pop culture are usually performed in film by nondisabled celebrities. Our short list consisted entirely of Peter Dinklage. And while that makes the list perfection, I look forward to adding to it.

Anyway, I'm back.

* Mujeres Activas en Letras y Cambio Social (MALCS, Women Active in Letters and Social Change) is an organization of Chicanas/ Latinas and Native American women working in academia and in community settings with a common goal: to work toward the support, education and dissemination of Chicana/Latina and Native American women's issues.

Thursday, July 26, 2007

Happy 17, ADA!













Today, July 26, is the 17th anniversary of the signing of the Americans with Disabilities Act. Here's a photo of the historic event, showing President George H. W. Bush signing the bill into law with Evan Kemp, then-Chairman of the Equal Opportunity Employment Commission, at Bush's right and Justin Dart, then-Chairman of the President's Committee on Employment of People with Disabilities, (in the hat) at Bush's left. Both men have died, but they were instrumental in creating this law protecting our rights. Standing behind Kemp is the Rev. Harold Wilke (left) and Sandra Swift Parrino, Chairperson, National Council on Disability (right).

Saturday, July 14, 2007

Movie review: Living in Oblivion

Well, a mini-review. Because kactus is right, Peter Dinklage's rant toward the end of this film is both hilarious and great righteous anger unleashed.

Living in Oblivion is a 1995 comedy about the trials of independent film-making, where everything that can go wrong with a production, does, and yet the project stumbles along. Here's a review of the movie as a whole that captures the comedic angst of the film.

Dinklage plays a dwarf named Tito hired for a goofy dream sequence in the film-within-the-film. Among the many misadventures of completing the dream scene, Tito finally quits in disgust after this tirade with the director:

Tito: Why does my character have to be a dwarf?

Nick: He doesn't have to be.

Tito: Then why is he? Is that the only way you can make this a dream, to put a dwarf in it?

Nick: No, Tito, I...

Tito: Have you ever had a dream with a dwarf in it? Do you know anyone who's had a dream with a dwarf in it? No! I don't even have dreams with dwarves in them. The only place I've seen dwarves in dreams is in stupid movies like this! "Oh make it weird, put a dwarf in it!". Everyone will go "Woah, this must be a fuckin' dream, there's a fuckin' dwarf in it!". Well I'm sick of it! You can take this dream sequence and stick it up your ass!
While I am again waxing on about All Things Dinklage, here's an old review of The Station Agent that appeared in The New Yorker, and here's a USAToday article on short actors in Hollywood.

Friday, July 06, 2007

Frida Kahlo -- Celebrating the 100th anniversary of her birth

Artist Frida Kahlo was born on July 6, 1907, in Mexico City, Mexico, to a Mexican Indian and Spanish mother and Hungarian Jewish father. She died at age 47, on July 13, 1954, but she is, quite possibly, the most world-famous disabled woman living or dead. Her art is her fame, as well as her relationship with fellow Mexican artist Diego Rivera and her communist politics. Deeply personal, her art is filled with imagery of impairment and physical pain.

There are indications that in addition to childhood polio, a devastatingly injurious tram accident at age 18, and the loss of a limb in her later years, Kahlo was born with some spinal condition such as spina bifida.

Along with the paintings shown here, I've got a collection of links more interesting than anything I can write about Kahlo:

Her paintings are catalogued and described fairly well (in both English and Spanish) here, as part of an excellent site all about Kahlo, her life and her work.

This article, "The Trouble with Frida Kahlo" by Stephanie Mencimer, published in 2002 in Washington Monthly explores how Kahlo -- and all female artists -- needed to have a tragic or sensational personal story to enter the male canon. Mencimer's analysis begs for a disability studies rebuttal, particularly comments like this:

Some feminist art historians have struggled against such reworkings of women artists, but Kahlo's pop-culture mania revives it with a vengeance. Kahlo certainly facilitated this process by painting herself as the quietly suffering female. In every possible sense, the mass-culture Kahlo embodies that now-poisonous term: victimhood. She was the victim of patriarchal culture, victim of an unfaithful husband, and simply the victim of a horrific accident. But that's probably one reason why she's so popular. "People like to see women as victims," says Mary Garrard, a professor of art history at American University.
And this:
Many of her surgeries may have been unnecessary. Even Herrera notes, "If Frida's physical problems had been as grave as she made out, she would never have been able to translate them into art." Kahlo's close friend, the famous doctor Leo Eloesser, believed that she used her many surgeries to get attention from people, particularly from Rivera. There's no doubt that she was obsessed with him in a way that should make feminists cringe. She also made several suicide attempts and spent much of her adult life addicted to drugs and alcohol.
Though the article is well worth a read for it's look at how Kahlo's inability to bear children is widely interpreted as a tragedy when she may well not have seen it as such. And for when Mencimer notes this:
One wonders what the postal service was thinking when it put Kahlo on a stamp. "Visas are denied to [foreign] artists with Frida Kahlo's politics," notes Chadwick.
Here is, I think, a more developed and disability-studies-friendly analysis of Kahlo's self-portraiture. (That's a link to the main page of a Frida site. Check out the sidebar feature labeled "Frida and her obsession of self-portraits.")

For true disability studies analyses of the 2002 film Frida, starring Salma Hayek, read Marta Russell's CounterPunch review and a wonderful discussion between Harilyn Rousso and Simi Linton at DisabilityWorld. Both movie reviews note the obliteration of any depiction of Kahlo's childhood polio and it's early effects, with the tram accident framed instead as the life-altering tragedy to her physical health. Also, her recovery from that accident is made complete in the film so that a tango between Kahlo and another woman is not complicated by what would have been an interesting limp. The Rousso-Linton discussion ranges beyond the movie itself to look at use of the word "cripple," sexuality, and class and disability.

Rousso says:
Remember the scene in the garden where she's sitting in her wheelchair a few months after the accident? To me, this is the quintessential stereotype about the person who is in an accident or illness--that their main desire, preoccupation is to be able to walk again. She is sitting in the garden, her parents arrive and she gets up out of the wheelchair, takes her first steps and suddenly becomes almost nondisabled.... I found it shocking when we finally do see her using a wheelchair in an ongoing way, which is about an hour and a half into the film. We are given no sense of the progression of her disability. Until then, her disability was not shown as affecting her daily life. It was shown as affecting her painting - both her decision to paint and at least some of the content of her paintings, but not the details of her life. She was by and large portrayed as a "non-disabled disabled women." Then suddenly well into the film she is shown as quite significantly disabled.
Here's a link about Liz Crow's short experimental drama Frida Kahlo's Corset. "Corset" refers to the orthopedic back braces Kahlo wore because of her impairments.

From a 2005 exhibition, here's the Kahlo site for the Tate Modern Art Museum in London.

Finally, this PBS site on the film The Life and Times of Frida Kahlo includes five of Kahlo's works of art made into image maps with additional info available to mouse rollover.

Links lead to visual descriptions in English and Spanish: The four paintings in this post are The Broken Column (1944), Tree of Hope, Remain Strong (1946), Henry Ford Hospital (1942) and Self-Portrait with the Portrait of Doctor Farill (1951).

Thanks to Penny for the heads-up on Frida's birthday.

Friday, June 15, 2007

Things that crack me up, #29

"This is a job for Blindness Girl!"

And, her resume explained by Steve Kuusisto at (where else?) Planet of the Blind.

Monday, June 11, 2007

Because

Penny tells me it's Peter Dinklage's birthday today:






















































Photo descriptions: There are five photos of Dinklage (My Imaginary Boyfriend). The first is a publicity shot for the sci-fi series Threshold where Dinklage wears a leather jacket over a dark red shirt. The second and third photos are from The Station Agent. In the second, he's standing on some railroad tracks with a suitcase next to his feet and the train tracks disappearing into the distance behind him. In the third, he's sitting in a doorway at the top of a few stairs with a woman and they're leaning toward each other to kiss. In the fourth photo, he wears a tan three-piece suit and stands at a podium in a courtroom. I think the photo is from Find Me Guilty. In the fifth photo, Dinklage sits at the edge of a table wearing blue jeans, a white undershirt and an unbuttoned dress shirt. His hands are in his pockets and his hair is tousled. Mmmm. The last pic is in black and white, as is the photo on the railroad tracks.

Happy Birthday Peter!

Friday, May 25, 2007

Movie review: Emmanuel's Gift

I didn't expect to like this 2005 documentary, the story of Ghanaian Emmanuel Ofosu Yeboah, born without a tibia in his right leg and one of the two million people in his country living as a second class citizen.

Why did I dread watching this flick? Yeboah "overcomes adversity." That tired inspirational trope that dominates stories of disabled people's lives. He rides a bicycle across Ghana. I've never really understood athletic endeavors meant to be attention-getters for some cause. Go pound some nails instead, okay? Do some activity with actual value beyond it's celebrity. And the film is narrated by Oprah Winfrey, who has never before uttered the words "disability rights," though she has no problem exploring the medical aspects and social misfortunes of impairment. Oh, Winfrey's had guests who happen to discuss ableism and crip rights -- Chris and Dana Reeve (to some degree) and William H. Macy* (eloquently) are celebrity examples. Never once did I see her take that bait and follow the thread of social injustice or call for people to demand change.

So I had reservations aplenty.

But here's the thing: In Ghana, where an astounding one in ten citizens have some sort of disability, infanticide of visibly disabled infants is common. If they aren't killed or hidden away shamefully, disabled Ghanaians become beggars on the street. That is the range of options.

So a guy with one working leg riding a bicycle across the nation -- 380 miles -- and calling for disability rights and opportunities had an incredible impact on a society that thought it had everyone in their rightful place.

When Yeboah was born, his father saw him and promptly abandoned the family. His mother was encouraged to kill her son, but instead she sent him to school and taught him he deserved all the privileges and opportunities nondisabled people have. When Yeboah had trouble getting the other schoolkids to let him play with them, he ingeniously saved his money (no easy feat) and bought his own soccer ball -- a rare commodity. The price of playing with it was letting Yeboah join in the game using his one full-grown leg and crutches.

With his mother ill and medical bills to pay, young Yeboah shined shoes for money. He left his village and family behind to go to Accra, the nation's capital, to earn $2 per day shining shoes instead of just $1 per day back home. So, he's a teenage boy on crutches shining shoes far from home to support his family -- mom and two younger siblings, I believe. Yet after his mom dies and he applies to the Californian Challenged Athletes Foundation (CAF), he asks not for cash but for a bicycle because he's thinking big. He wants all Ghanians to see that disabled people can do more than be street beggars.

Yeboah's bike ride makes him a national hero and celebrity. The film follows his visit to America, where he competes in some athletic events and decides on amputation of his limb so he can wear a prosthesis. He returns home without his crutches, but with political momentum. We see him meeting with tribal chiefs, disabled beggars whom he encourages to reach for more, and most poignantly, the father who abandoned him.

The film's slick editing interferes with the story, but the celebrity created by Yeboah's bike ride forces public officials to reconsider national disability policy and respond, as one canny bureaucrat notes, that ''we may have underestimated the urgency of the matter." Returning to the United States, Yeboah meets with fellow Ghanaian and then-U.N. President Kofi Annan, and also receives grant money for his goals of helping other disabled Ghanaians and starting a wheelchair basketball team for the 2008 Paralympics in Beijing.

In a historic meeting at King's Palace in Kibi, Ghana, where because of superstition and stigma no disabled person has ever before been invited, King Osagyefuo praises Yeboah and throws his support as leader of 2.5 million people in Eastern Ghana behind efforts to improve the lives of disabled citizens. Says King Osagyefuo:

“The society and country are not set up to take care of handicapped people. Emmanuel has tenacity, endurance and he has a strong heart to do the things that he is doing and to use what he has done as an example for other disabled people. We will support him and tell the government that they are also part of us—they may be physically challenged, but mentally and intellectually they are the same as us.”
The King's statements are nothing short of revolutionary in a culture where disability is commonly believed to be the karmic result of immorality.

Yeboah hopes to become a member of the Ghana Parliament one day. In the meantime, he's married -- to a nondisabled Ghanaian woman, which is apparently a feat of disability acceptance in itself due to cultural stigmas -- and has a daughter. The film fails to show these last and most ordinary achievements in his life, but Yeboah's story shines through any directorial shortcomings to show what a single person can achieve when he is taught his own self-worth.

------------------------------------

* IIRC, Macy appeared on Oprah after the release of Door to Door, his award-winning made-for-tv true story of Bill Porter, a man with cerebral palsy who confounded all expectations by becoming a top door-to-door salesman. Macy had become a national ambassador for United Cerebral Palsy and when prompted by Oprah about his volunteer position he spoke eloquently and at length specifically about disability prejudice and discrimination.

Cross-posted at Echidne of the Snakes