Tuesday, July 31, 2007

Doctor murders disabled man to harvest organs

This story comes out of central California:

San Luis Obispo County prosecutors have charged a transplant surgeon with prescribing excessive drugs to a disabled patient to hasten his death and harvest his organs.

Here are the Facts First:

  • Ruben Navarro of San Luis Obispo was admitted to Sierra Vista Regional Medical Center on January 29th, 2006.
  • The 26-year-old was placed on life support and identified as a potential organ donor.
  • In February, California transplant donor network Doctor Hootan Roozrokh came to San Luis Obispo to procure Navarro's organs.

  • The San Francisco surgeon is facing three separate felony charges in connection with the death of Rueben Navarro.

    Navarro was a patient of a local skilled nursing facility when he suffered respiratory and cardiac arrest.

    He was taken to Sierra Vista Regional Medical Center where doctors determined he had minimal brain function.

    However, he was not declared brain dead.

    The San Luis Obispo County district attorney's office alleges that when Dr. Roozrokh arrived at Sierra Vista he gave Navarro medications including morphine and Ativan to speed up his death.
    I hear this story will be covered on CNN's Nancy Grace show this evening. (Update: Show transcript is here.)

    Note that my headline above is not what the news link declares. The criminal charges against the doctor currently include "mistreatment of a dependent, severely disabled adult" and "administering a harmful substance and unlawful controlled substance prescription." But really, the sum of and point of the charges is that the man was killed so the transplant surgery could begin.

    Here's a link to a UC-Berkeley site called Organs Watch that tracks worldwide trafficking and abuse.

    Monday, July 30, 2007

    Slumgullion #42

    A hodgepodge of links from my email files:

    Kenny Fries writes "Running outside of his lane" on Oscar Pistorius in the Washington Post. Also a Post poll on whether Pistorius should be allowed to compete in the Olympics.

    The Denver Post on comedian Josh Blue, an article that shows how to cover the lives of disabled folks and discuss their impairments without resorting to inspirational or supercrip themes. (Bonus points if you can pick out the sentence that bothered me, though.)

    Commentary in the Toronto Star: "Chance to stop crippling kids" by Helen Henderson on language and disability.

    "Braille literacy flags, even as technology makes it more urgent" in The Christian Science Monitor

    Kathi Wolfe writes "Get proud by practicing: The ADA's anniversary is Independence Day for 'queer crips' " at the Washington Blade.

    "No indictment in Katrina hospital deaths," the Associated Press report.

    "Roger's Battle," coverage of Roger Green's fight against the state of Georgia's practice to send disabled children using ventilators to out-of-state nursing homes when they reach the age of 21.

    "With a defendant afraid of heights, stairwells and elevators, court goes alfresco" in the Milwaukee Journal-Sentinel covers an example of apparently well-mannered and businesslike acceptance of ADA accommodations needed by a woman coming to court.

    At The Bygone Bureau, an article by Kevin Nguyen on an accessible sailing program in Boston.

    Laura Hershey on "The Dilemma for Disabled Authors" at BeyondChron reviews three books about disability: Anne Finger's Elegy for a Disease, Stephen Kuusisto's Eavesdropping and Georgina Kleege's Blind Rage. (I discussed Kleege's book a while back, here.)

    As We Are

    As We Are logoMy friend Trudi Evans has a magazine, As We Are, that's been up and running online for a while now and I haven't plugged it even once. This despite health and disability being a presence at the site, partly through "Vibrating Liz" a.k.a. Lymphopo of blog As The Tumor Turns writing there. The mag is still shiny new, but knowing Trudi and several of the women writing for it as I do, I know disability is considered a feminist issue by them and I suspect that'll be evident as time goes on.

    I'm too late for the magazine's blogging contest for those who bleg a bit for the magazine. But I don't care. It's a great online site for feminists, including disabled ones. As We Are is added to the sidebar as well.

    Sunday, July 29, 2007

    ADA coverage on The Daily Show

    Last Thursday, the anniversary of the signing of the ADA, was noted on Comedy Central's The Daily Show with this clip called "High Rollers":



    I can't find a transcript or description of the video anywhere. If someone knows where that might be found, if it exists, please leave a link.

    Friday, July 27, 2007

    Linguistically disabled?

    An article by Mark Aronoff in The Chronicle of Higher Education (available free to nonsubscribers for just a few days) asks the question "In Discussing Disabilities, Are We Linguistically Disabled?" I missed it, but apparently back in June Today show personality Al Roker made a joke about the animated logo for the 2012 London Olympics that had to be changed because it triggered seizures for some people with epilepsy. Roker's comment:

    "Remember that controversial Olympic logo for the 2012 Olympics in London? Some folks have complained that the campaign actually sent them into epileptic seizures. Well, we asked you to weigh in on our Web site in an informal poll; those of you who could get up off the floor after shaking around were able to actually log in."
    And here's his apology, offered the following day:
    "I started joking about it. I want to make this clear — I was not joking about epilepsy or anyone who suffers from epilepsy. ... We understand and know that this is a serious affliction and would never joke about that. ... We were joking about the logo — not about epilepsy. If anybody was offended, I heartily and really humbly apologize."
    Well, of course, he was joking about epilepsy and the people who have it. If he'd been joking about the logo only, he'd have made the crack about advertising promotions made by committee or London's competence in planning the big event or the International Olympic Committee needing a doping rules exception for anti-convulsive drugs. It's a fairly typical non-apology apology. He didn't do anything wrong, but he's sorry anyway.

    Aronoff asks and offers an answer for the question of why Roker's joke created a furor:
    There are two reasons. The first, much discussed, is Roker's hypocrisy. Roker was one of the most insistent critics of Don Imus's infamous "nappy-headed ho's" comment, which eventually led to Imus's dismissal. Why, some ask, should Roker not be held to the same standard? The second reason, less discussed but worthier of comment, is the taboo status of disability in American culture and especially public language.

    Over the last two decades, disability has become the most taboo subject in American society. We seem unable to reconcile the fundamental tenet that all men are created equal with the equally powerful new admiration for physical and emotional perfection that drives so many of us to plastic surgery and Prozac. To a linguist, though, regardless of the cause, the evidence is in our language.
    I disagree with that second reason for the upset over Roker's comment. Roker was being a hypocrite and should be held to the same standard, but I don't think jokes about the disabled are taboo. I think they're considered very much fair game. Witness the frequent use of "retarded" by high profile comedians like Jon Stewart or the common reference to some politician's or celebrity's poor decision as "crazy." I think this particular joke by Roker was about having a seizure -- a specific physical and medical event -- which is distinguishable from being a person who has seizures. Joking about having seizures is perceived as like wishing someone bad luck or misfortune, and that's what was considered in poor taste.

    Aronoff goes on to note that taboo subjects are sometimes treated with complete silence or discussed through euphemisms. "A good euphemism," he says, "should always sound a bit peculiar, allowing us to create a distance between ourselves and the subject, as if we are saying the word in shudder quotes or picking it up with tongs." Think "physically challenged" or handi-capable."

    Aronoff also states that a taboo subject can be identified by the instability of terminology used to discuss it, like the evolution of terms for race ("colored," "black," "African-American"). I'd agree with that, as far as it goes, but I think this instability also indicates efforts to speak the unspeakable and expresses changing cultural attitudes. If someone refers unironically to "colored people" or "crippled kids" they're not simply using antiquated language, they're displaying a blatant failure to see or embrace current (or emerging) cultural norms. Language use is a barometer of an individual's social beliefs.

    Aronoff continues:
    The disability taboo is part of a larger societal trend to taboo all perceived hu-man defects, all departures from physical and mental perfection. That larger taboo has led to one of the strangest and most notable euphemisms in the history of any language or culture: the "people (living) with X" construction. What is most interesting about that euphemism is that it is not a single expression but a frame that allows speakers to construct an entire family of euphemisms, since X can be any tabooed condition, and the word "living" is optional.

    The construction appears to have started with chronic diseases, in such expressions as people (living) with cancer/AIDS/ADHD/etc. One rationale for this way of putting things was that by literally placing the person first, not the condition, we are de-emphasizing the condition. Another was that it allowed us to avoid the degrading term "victim," as in "cancer victim." The "people (living) with X" construction quickly moved beyond chronic diseases to stigmatized human conditions that had always been described with adjectives, like (mentally) retarded. Now they are people (living) with mental retardation. More broadly, where we formerly spoke of disabled people, we now say people with disabilities or, following the California examples, people with nothing but abilities, which, by deleting the negative prefix dis-, allows us to remove ourselves even further from the unspeakable. Finally, we have a simple way to talk about disability without mentioning it at all!

    I wish there was a disability equivalent to the term "queer." Something to express difference and the vast spectrum of ability that "disability" doesn't indicate. "Crip" and "gimp" are mobility-specific, but do have a directness that's needed to counter the euphemisms. George Carlin has an old comedy bit about how euphemisms get longer to distance the discussion from the impact of the idea -- "shell shock" became "battle fatigue" and then "post-traumatic stress disorder." Syllable-count works as bullshit detector, really. So, where's our one-syllable word?

    Disability Blog Carnival #19 at Arthritic Young Thing

    Zephyr at Arthritic Young Thing has the latest Disability Blog Carnival up and the theme is Sex. It's an amazing collection of posts that include thoughts, rants and reflections on sex, relationships, BDSM and kink, and activism. And so much more. Check it out!

    Carnival icon: A fake ticket filled out for admissionThe next carnival is with Andrea at Andrea's Buzzing About on August 9 and the very summer-y theme is "On Holiday." Deadline for submissions is Monday, August 6, and the carnival submission form is here. Andrea already has her very own icon for the event, shown at left. Visual description courtesy of Andrea: A pre-printed event ticket in various shades of green, with the following notable fields:
    Section/Aisle: YD (meaning, Yard)
    Row/Box: GA (meaning, General Admission)
    All applicable: ALL AGES
    Price: $20.00
    Accessible Admit
    Ticket title reads:
    ANDREA’S BUZZING ABOUT
    DISABILITY BLOG CARNIVAL
    W/ FREE REFRESHMENTS
    BUTTERFLY GARDENS
    INTERPRETERS AVAILABLE
    THU 9 AUG 2007 12:00AM

    Thursday, July 26, 2007

    Things that crack me up, #33

    Signs. Doncha always love them signs?

    Placard reads











    This placard reads
    It reads


























    Visual description: These three photos from collegehumor.com are about as unpretty as photographs can be. The first is a closeup of a placard that reads "HANDICAPPED FACILITES (sic) LOCATED ON 2ND AND 3RD FLOORS." The second pic is of a placard hanging next to a door with a lock on it that requires a key and a damaged wall above the placard, possibly where another sign has been yanked down. This placard reads "HANDICAP TOILET LOCATED ON 2ND FLOOR." The last photo is of a paper sign hanging in a window. It reads "NOTICE! HANDICAP BUTTON DISABLED (until further notice) Thanks for your Cooperation." There's something so passive-aggressive about that last.

    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).

    Tuesday, July 24, 2007

    Veterans sue U.S. government

    On Monday, two veterans' organizations filed a nationwide class-action suit against the U.S. Department of Veteran Affairs (VA) for failure to help thousands of post-9/11 war veterans with post-traumatic stress disorder.

    ... Of the 1,400 VA hospitals and clinics scattered across the United States, only 27 have inpatient programmes for PTSD. This despite the fact that an estimated 38 percent of soldiers and 50 percent of National Guard who have served in Iraq or Afghanistan report mental health issues ranging from post-combat stress to brain injuries.

    The VA also has a backlog of over 600,000 disability claims, and the average Iraq war veteran who files for disability must wait six months for an answer. If he or she files an appeal, it could take up to three years.
    In the late '80s, I recall that homeless men in American cities were so often mentally ill Vietnam vets that it was practically an urban cliché. It seems we're heading down that same road again:
    In their lawsuit, the veterans groups ask the federal courts to force the VA to clear the backlog of disability claims and make sure returning veterans receive immediate medical and psychological help. They also want the judge to force the VA to screen all vets returning from combat to identify those at greatest risk for PTSD and suicide.

    An estimated 400,000 veterans sleep homeless on the streets of the United States. The VA estimates 1,000 former servicemembers under its care commit suicide every year.

    Cross-posted at Echidne of the Snakes

    Friday, July 20, 2007

    Friday music: Wonder by Natalie Merchant

    My favorite song about being bodily different:

    Direct link to YouTube music video here.




    Wonder
    by Natalie Merchant

    Doctors have come from distant cities, just to see me
    Stand over my bed, disbelieving what they're seeing.

    They say I must be one of the wonders
    Of God's own creation.
    And as far as they see, they can offer
    No explanation.

    Newspapers ask intimate questions, want confessions
    They reach into my head to steal the glory of my story

    They say I must be one of the wonders
    Of God's own creation.
    And as far as they see, they can offer
    No explanation.

    Ooo, I believe, Fate smiled
    And Destiny laughed as she came to my cradle
    Know this child will be able
    Laughed as my body she lifted
    Know this child will be gifted
    With love, with patience, and with faith
    She'll make her way, she'll make her way.

    People see me, I'm a challenge to your balance.
    I'm over your heads how I confound you
    And astound you
    To know I must be one of the wonders
    Of God's own creation.
    And as far as they see, they can offer
    No explanation.

    Ooo, I believe, Fate smiled
    And Destiny laughed as she came to my cradle,
    Know this child will be able,
    Laughed as she came to my mother,
    Know this child will not suffer,
    Laughed as my body she lifted,
    Know this child will be gifted
    With love, with patience and with faith
    She'll make her way, she'll make her way.

    Tuesday, July 17, 2007

    Italy, what's up?

    Why are hundreds of you Googling Aimee Mullins photos today?

    Update 7/18: Hmm, my curiosity continues. What exactly has made hits to my site triple, and why is all the interest from all over Italy on Mullins?

    Monday, July 16, 2007

    The 8 random things meme

    I've been tagged by 'Ryn!

    Here we go:

    The rules:

    1. Let others know who tagged you.
    2. Players start with 8 random facts about themselves.
    3. Those who are tagged should post these rules and their 8 random facts.
    4. Players should tag 8 other people and notify them they have been tagged.

    Eight Random Facts:

    1. I don't currently have a driver's license -- just a state ID -- but my identification has never been honest about my true height. I'm 5'11 and 3/4", or I was when my college roommate Michelle and I got drunk on screwdrivers while baking oatmeal-chocolate-chip-rum-raisin cookies to celebrate moving out of the dorm and into our first apartment. We had no furniture, so I laid down where the dining table should have been and we measured. It's possible we weren't entirely accurate. Or I may have shrunk since 1990.

    For a while my license said I was 5'5", and after I added a couple inches a cop once looked at the ID and then down at me in my scooter and declared there was no way I was as much as 5'7". I've always overestimated my weight too. Sometimes people don't want to see the truth.

    2. I was so painfully shy as a child that even though Laverne & Shirley was one of my favorite tv shows, I'd often have to leave the room when their escapades led to public spectacle and embarrassment that I could not bear to witness. It's like getting tickled: There's the joy of being unabashedly alive, but it also makes me anxious and need to pee.

    3. As a child, I took ten years of classical training in piano. I also played the guitar, the viola, and was part of the percussion team in the grade school and junior high bands. All of that was over by the time I was 16 and my manual dexterity began to go. But the piano lessons have left me with a natural affinity for any music with some good piano riffs in it.

    4. Ten minutes. I need a minimum of ten minutes after I first get out of bed with no one talking to me or messing with me in any way. Once I get that, it'll likely be a very fine day, but if I don't get that, all bets are off.

    5. Guacamole is the soupy-green nectar of the gods.

    6. Either that or margaritas are. Rocks and salt.

    7. The absolute best thing I did for myself last year was to splurge on two art prints that are now framed and in my bedroom. I had no idea how much joy they would bring me each day, how much color and creativity they'd let into my life. I'm still working on what I can do this year to equal that.

    8. My twin sister and I have a very juvenile response to bra-shopping. We gather our choices, go into the giant accessible dressing room, then giggle ourselves sick with the visuals each option presents. You'd think we'd have outgrown this at age 38, but no. And what's really silly is that I no longer actually wear bras.

    9. I'm a sucker for any story -- book or film -- that messes with the space/time continuum. And post-apocalyptic fiction. Combine the two and I'm stunned into geeky bliss.

    Will you play?

    I tag Steve and/or Connie, Laura, Dawn, Elizabeth, Trinity, Wheelchair Dancer, Frog and Amanda.

    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 13, 2007

    Friday music: Telescope Eyes by Eisley

    So, not strictly about disability, but very relatable, I think.



    Link to YouTube video. Interestingly, the little story within the music video has captions.

    Lyrics:

    Telescope Eyes

    Ohh,
    You humor me today,
    Calling me out to play,
    With your telescope eyes, metal teeth,
    I can't be seen with you, you see

    Please don't make me cry,
    Please don't make me cry,
    I'm just like you I know you know,
    I'm just like you so leave me alone,

    I wonder, why can't you see,
    You're just not near enough like me,
    With your telescope eyes,
    Metal teeth, I can't be seen with you,

    Please don't make me cry,
    Please don't make me cry,
    I'm just like you I know you know,
    I'm just like you so leave me alone,

    Please don't make me cry,
    Please don't make me cry,
    I'm just like you I know you know,
    I'm just like you so leave me alone,

    Please don't make me cry,
    Please don't make me cry,
    I'm just like you I know you know,
    I'm just like you so leave me alone.

    Oh, you humor me today...

    3 perks to using a ventilator

    Yes, perks.

    1. Sleeping with your head under the covers while still getting very fresh air.

    2. No histamine buzz in the nose from allergies since inhaling doesn't happen up there.

    3. And one I learned today: Sometimes, when the vent alarm sounds, a male cardinal sitting outside at the nearby birdbath will cock his head and answer back. "Beep! Chirp! Beep! Chirp! Beep! Chirp! Beep! Chirp! Beep! Chirp!"

    Thursday, July 12, 2007

    Disability Blog Carnival #18 at Retired Waif

    Disability Blog Carnival #18 at Retired WaifThe latest Disability Blog Carnival is up at Retired Waif and it looks fantastic, particularly since our intrepid host put it together while very pregnant and having some labor pains. (!) The theme, developed from looking at the submissions, is The Disabled! We’re just like YOU!!!!

    Retired Waif explains:

    .... This edition of the Disability Blog Carnival is designed to explain to the untutored able-bodied type that there’s nothing abnormal about us… we’re just like them! Please do accept my tongue-in-cheek parody and sweeping generalization in the spirit it’s meant, and don’t allow my irreverence to detract from some of the awesome, wonderful writing to be found in… Disability Blog Carnival #18
    The above icon for the carnival is a photo of the sculpture of a nude and pregnant Alison Lapper that resides in Trafalgar Square in London. Alison Lapper is a British artist who was born without arms and with foreshortened legs, and her personal website is here. The sculpture is by artist Marc Quinn. On the sculpture, Quinn says this:
    The sculpture is a portrait of Alison Lapper when she was 8½ months pregnant. It is to be carved out of one block of white marble and would stand 4.7 metres high.

    At first glance it would seem that there are few if any public sculptures of people with disabilities. However, a closer look reveals that Trafalgar Square is one of the few public spaces where one exists: Nelson on top of his column has lost an arm. I think that Alison's portrait reactivates this dormant aspect of Trafalgar Square. Most public sculpture, especially in the Trafalgar Square and Whitehall areas, is triumphant male statuary. Nelson's Column is the epitome of a phallic male monument and I felt that the square needed some femininity, linking with Boudicca near the Houses of Parliament. Alison's statue could represent a new model of female heroism.

    In the past, heroes such as Nelson conquered the outside world. Now it seems to me they conquer their own circumstances and the prejudices of others, and I believe that Alison's portrait will symbolise this.

    I'm not physically disabled myself but from working with disabled sitters I realised how hidden different bodies are in public life and media. Her pregnancy also makes this a monument to the possibilities of the future.
    The photo on the icon is in color with a puffy-clouded blue sky behind the sculpture where it sits on a pedestal. The words "disability blog carnival" are overwritten in red text at the bottom.

    Carnival #19 will be hosted by Zephyr at Arthritic Young Thing on July 26, 2007, and the theme is "Sexuality and Disability." The submission form is here. Deadline for submissions is Monday, July 23.

    By the way, although Zephyr herself is Canadian, July 26 is the 17th anniversary of the signing of the Americans with Disabilities Act. I double dare anyone to put together a submission that fits Zephyr's theme and explicitly celebrates such an auspicious occasion. See you there.

    Blogroll additions

    I can't find my "list o' links I intend to add" but I did cobble together this many from my extremely disorganized files. New to the More Gimp Parades blogroll:

    [with]tv
    Asperger Square 8
    Chronic Pain Lifestyle
    Disapedia
    Hop Bloody Hop
    Illin n' Chillin
    Journal of Literary Disability
    Kids On Wheels
    Retired Waif
    Tremors of Intent
    Wikibility Rights

    Wednesday, July 11, 2007

    Slumgullion #41

    A link list to five blog posts you should see:

    At Writhe Safely, "Damn, feminists" discusses the tendency of feminist activists to overlook mental health issues and specifically the case of Simone D., which, as flawed plan points out should have all feminists up in arms, writing letters, making phone calls:

    Crickets chirp at what’s happening in your own back yard; not a single post in the feminist blogosphere about Simone D., New York Hispanic woman with an impressive story of injustice and a rather pressing need for acts which activists can and are being urged to do on her behalf in the activist way they pride themselves on. Given the right conditions. Which are what again?
    At The Trouble with Spikol, Liz looks at PETA head Ingrid Newkirk's attack on Michael Moore's weight. Here's an excerpt, but read the whole, excellent piece:
    “Congratulations from PETA on the reviews for Sicko,” Newkirk wrote. “Although we think that your film could actually help reform America’s sorely inadequate healthcare system, there’s an elephant in the room, and it is you.” This was followed by Newkirk’s advice that Moore convert to vegetarianism. She wrote: “As they say at Nike (sorry!): ‘Just do it.’”

    I was horrified—as were many others who read the letter. PETA later claimed that where Newkirk was using the “elephant in the room” metaphor, she was merely invoking a commonplace idiomatic expression rather than commenting on Moore’s girth. But that’s bullshit.

    She could’ve just as easily put it in other words, but PETA has always prioritized cleverness over compassion. I’m sure she and her staff were thrilled when they thought of that one. What a zinger!

    Newkirk’s decision to co-opt the debate about Moore’s film is preposterous. Sicko creates an essential opportunity to galvanize activism on the subject of healthcare, and given the reality that Moore histrionically illustrates in his film, we can’t afford to waste this moment.
    At The Joy of Autism, "Are We Listening?":
    It is rare to sit in a room with so many other autistic people, some walking back and forth in the lunch room humming to themselves in a heightened perhaps even ecstatic state, where I can only imagine in other less accepting settings, would be frowned upon. When I came to squeeze into the small space where this young man hummed to deposit my lunch tray, he politely moved away to make room for me, extremely aware despite the fact that others would believe otherwise.

    When I saw him next time in the leisure area, he was asking others to play a board game with him. Other autistic kids were hanging out together, and sprawled themselves out on couches in front of the TV, not unlike other teenagers. Around the grounds, people wore badges that indicated if they wanted to talk, if they would only talk to people they knew, or if they did not wish to talk at all. There were many times I wanted to flip my own badge that indicated the latter – as I am a person who likes to absorb and observe, yet have been taught to socialize and be diplomatic and suffer from a compulsion to keep that impression going. Although it’s a skill I’ve acquired, I still find it exhausting. I wished that those badges existed at the many functions I have attended, where most people pretend to be something that their not, or interested in things that others say that they actually have no interest in at all. I consider all the wasted time I’ve had to spend doing "small talk." and all the time I spend in explaining life as we know it to people who don’t have the time to understand.
    At ChronicBabe, "How asking for help has brought me closer to friends":
    My friends sometimes forget that I am in pain, and for the most part, I'm glad my friends forget about it. The last thing I want is for my pals to walk around, worrying about me, thinking every time they see me that I'm a mess.

    But because I've learned to live with pain, I don't always say anything about it. I might take a day off because I don't feel well, but I don't announce it to the world. I might need somewhere to sit when we go out, but I find it myself most times. There are days when I can't walk very far, or I'll go out with girlfriends and I can only dance to a couple songs. But I don't whine about it.

    Because I'm relatively quiet about the pain I live with, people forget I have it, especially my friends.
    At Bums & Bellybuttons, "The Day I Became Different":
    ....When I was about 5, I learned that I was different. When I entered the restaurant with my parents, a young boy (about my age, I guess) stood up and repeatedly announced to the entire population, "She's in a wheelchair!" Needless to say, staring commenced. Pairs and pairs of eyes swiveling toward me, a little girl, cute in her party dress, suddenly not the girl she was five seconds before she came through the door. Even thinking about it 20 years later makes me want to claw my skin.

    It had never occurred to me to realize that sitting down made me fundamentally different than just about everyone I encountered. No one else seemed to notice, so why should I? My parents didn't make a big deal out of it, unless it was for my own physical safety. It just was as it was.

    Monday, July 09, 2007

    What would that look like?

    In the recent discussion of Aimee Mullins in Sports Illustrated, Sara, Trin and I have been debating Mullins' portrayal in that mag, and the portrayal of amputees and disabled people, generally, by the media. In the sidebar at right I've got a category for analysis of media coverage of disability, Wheelchair Dancer frequently looks at NYT coverage (examples of that here, here, and here), and there's a thoughtful discussion at Medical Humanities Blog, also about a woman amputee excelling in her career.

    So, what would positive media coverage of Aimee Mullins, specifically, look like? How would someone laud her successes without putting her on the supercrip pedestal or fetishizing her amputated limbs either textually or with photos? Here are a couple alternatives to the SI story's sexualized supercrip slant:

    And here is Petra Kuppers on "Addenda? Contemporary Cyborgs and the Mediation of Embodiment" where she specifically analyzes a fashion photo of Mullins wearing those old-fashioned wooden prosthetics she briefly mentions in the SI article. It's a complex look at disability, feminism, Mullins' agency or complicity with the image, "false consciousness" and media portrayal both of disability and femininity. I'm too short on time and energy just now to write about it, but it's right on topic here.

    Visual description: There are three photos here. The first is one of Lynn Johnson's collection on Mullins and is in black and white. Mullins stands in her athletic uniform and high tech racing prosthetics on a race track facing a woman holding a microphone and two men with tv cameras on their shoulders. This is a media interview at the 1996 Paralympics in Atlanta.

    The second photo is the fashion art pic Kuppers analyzes and this is her thorough description: "The large colour photo presents Mullins sittting on the floor, her head in her hand in a defeated or melancholic position. She appears squeezed into the frame, contained by the photo’s borders. The colours of the image are brown and beige, earthy, taking up the blond of Mullins’ wild hair and echoed in the make-up. Mullins is wearing various stiff items of clothing, all of which extend out of the photo frame. The clothes are referenced in the accompanying text, in accordance with the generic conventions of fashion photography. The comprise of: a calico-coloured skirt skeleton reminiscent of whalebone crinoline underskirts (crinolin [sic] frame, for hire from Angels and Bermans) and a textured close-fitting top (suede T-Shirt by Alexander McQueen) to which shoulder ornaments are attached that look like wooden filigree Japanese or Spanish fans (wooden fan jacket, by Givenchy Haute Couture). She is also wearing artificial ‘mannequin’ lower legs (not referenced as ‘model’s own’ in the picture blurb, but extensively discussed in the Press). The legs look old and stained, and while one foot with coloured toenails is visible in the frame, the other reaches out to frame-left."

    The final photo is Mullins running full-out on a beach with the ocean and blue sky behind her. She's heading down the beach away from the camera and appears to be wearing the exact black bra top and string bikini bottom she wears in the posed studio photo topping the SI article -- that much-discussed other photo.

    Sunday, July 08, 2007

    Overdue bill threatens life support

    From The Flint Journal in Flint, Michigan:

    Bedridden with a chronic lung disease, Patricia Alsteen depends on machines to help her breathe.

    But the mother of four said she's worried that her electricity will be shut off because she can't pay a sizable power bill that accrued, in part, because of her life-support equipment.

    For weeks, Consumers Energy Co. has been threatening to shut off her services, she said.

    "I understand I owe them money," said Alsteen, 43. "I would pay it if I had it."

    A spokesman said Consumers is holding the account open while she works with agencies that might be able to help with her energy bills.

    "We are waiting to hear back from the customer about contact she made with some other agencies, and we're continuing to work with her on a payment plan," said spokesman Terry DeDoes.

    Alsteen said she is on Social Security and hasn't been able to work for several years. She has a caregiver and lives with her four children, ages 7-18, and a grandchild, 2.

    She's been hospitalized several times over the past year, including once for a bout with pneumonia that nearly killed her, she said.

    "Every time I go in the hospital, I have to pay somebody to come and take care of my children," she said.

    During the day, she receives oxygen from a machine through a trachea tube. At night, she is on a ventilator.

    Over the winter, Alsteen paid about $230 a month to Consumers under a seasonal billing protection plan, she said. But because she used about twice that amount of energy, a bill of more than $2,000 came due when the plan ended in May, she said.

    A recent television news report on her situation drew a couple of donations, including $450 from an Owosso woman who took up her cause and started a fund at Charter One Bank in Owosso.

    The benefactor, Jenny Roberts, said the overdue power bill is literally a life-and-death situation for Alsteen.

    "When she was crying, I was crying," Roberts said. "She said, 'If they shut off my life support, I'll die.'"

    DeDoes said Alsteen didn't need to pay the entire balance.

    Consumers granted a 14-day extension for her to pay an agreed-upon sum, then cut the payment to $321, DeDoes said. A church stepped in and covered that bill, he and Alsteen said.

    The utility also sent forms on a discounted rate for life-support equipment, along with a list of agencies she might call for help, he said.

    Alsteen said she already receives the discounted rate and hasn't been able to find much assistance.

    "I called agencies, I called churches - everywhere I could think of or where people told me to call," she said. "None of the agencies had money.

    "I feel kind of like a bum asking people for help. I'm not that kind of person."

    Consumers planned to speak with Alsteen on Monday to discuss her situation, DeDoes said.

    "We encourage customers to call us as soon as they believe they are going to have a problem paying a bill, and not when they receive a shutoff notice," he said.

    "That way, we have more time to set up payment plans and work with a customer."

    Donations can be sent to The Patricia Alsteen Fund, c/o Jenny Roberts, c/o Charter One, 200 E. Main St., Owosso.

    Friday, July 06, 2007

    Friday music: Mr. Larkin by State Radio



    Direct link to the YouTube live version of this song. A softer version is available at eMusic.


    Lyrics:
    Mr. Larkin

    I work in the kitchen
    At an old folk's home
    I do my best but I too am getting on
    I do the dishes but lately I been dropping plates
    See as I get older my hands are starting to shake

    So Mr. Larkin
    See I got to hold this job
    Did you misspeak when you told me
    She was all but gone
    Mr. Larkin
    Dock me my one week's pay
    But don't ask me to leave
    I can't afford that today

    Ten years ago my wife took sick
    So I brought her here
    My job I quit
    I started working for the home
    So I could be by her everyday
    We couldn't afford the cost in any other way
    So

    So Mr. Larkin see I
    I know she know who I am
    Every now and then she'll squeeze my hand
    It's what I live for it's why she don't die
    So Mr. Larkin won't you won't you give me this try

    I walk to work on route 27
    I see the same cars pass everyday
    And through all this New England weather
    You know never once have I been late

    So Mr. Larkin see I
    I know she know who I am
    Every now and then she'll squeeze my hand
    It's what I live for it's why she don't die
    So Mr. Larkin won't you won't you give me this try

    I see the argument you're makin'
    And I understand you got to do your job
    And believe me I know she's turning angel
    But you see this woman is all I got

    So Mr. Larkin see I
    I know she know who I am
    Every now and then she'll squeeze my hand
    It's what I live for it's why she don't die
    So Mr. Larkin won't you won't you give me this try
    Won't you give me this try
    Won't you give me this try


    Okay, so the song "Mr. Larkin" is about nursing homes and staying near your loved one.

    This is the State Radio song that I cannot get out of my head:

    "Camilo" about the Iraq war. The live video version explains the song's origin.



    Lyrics:

    Woke him up with a barrel to his head
    His eyes shut tight bracing for the blow
    Resigning his life to the metal held
    In another man's hand

    Twenty days in a concrete fallout
    What life have I to take your own
    Oh my country won't you call out
    Doorbells are ringing with boxes of bones
    And from another land's war torn corners
    To a prison cell in my own
    Punish me for not taking your orders
    But don't lock me up for not leavin' my home

    Your words just a bloody fallacy
    A house of cards you painted white
    You tried to recreate Normandy
    But you made up the reason to fight
    And now red oil is spillin' down on the street
    And your eyes too big for the belly is weak
    Will you not refuse this currency
    Or is blood money just money to you
    Is blood money just money to you

    Twenty days in a concrete fallout
    What life have to take your own
    Oh my country won't you call out
    Doorbells are ringing with boxes of bones
    From another land's war torn corners
    To a prison cell in my own
    Punish me for not taking your orders
    But don't lock me up for not leavin' my home

    Camilo
    Camilo
    Leavin' my home
    Camilo

    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.

    Thursday, July 05, 2007

    Not "legless": Ten pairs of legs!

    There's been a discussion making the rounds on feminist blogs about a recent Sports Illustrated story on Aimee Mullins, double-amputee athlete, actor, model, most current President of the Women's Sports Foundation and apparently also one of the 50 Most Beautiful People in the World. The SI story uses the "supercrip" stereotype to hype Mullins considerable accomplishments with a lede that first lists her successes and then sets her up on that unreachable pedestal:

    Her accomplishments are each impressive enough on their own, but when you take into account that she's done it all on silicone and titanium legs, she's just making the rest of us look bad.
    Accompanying the text are several photos -- one, thankfully, showing her actually competing athletically -- with the most prominent pic being the topic of bloggy discussion. Here it is, at left. It's a full body black-and-white shot of Mullins in profile, positioned on all fours as if at the starting blocks for a foot race. She's wearing high-tech, below-the-knee prosthetics, a black bra and string bikini bottoms, with a wind machine swirling her hair in the air. She's not on a race track. This is a posed publicity shot.

    Now, I do hesitate to just post this photo, but as it happens, Mullins is already the number one Google image search leading to my site, for a magazine cover photo she modeled years ago and which I never did actually post here -- only linked to prior to now. But, what the hell, this is that photo too:

    Photo description: It's a magazine cover with the bold capitalized words "DAZED" across the top and a background of all white. Mullins wears form-fitting athletic pants and studio lighting accentuates the curve of her buttocks. She's got the high-tech prosthetics that look much like wide flat metal hooks, and she's not wearing anything else. She's turned away from the camera enough that her upraised left arm allows her to peek over her bicep at the camera and her left breast is in provocative profile. At knee height, down by her prosthetics, runs the capitalized text "Fashionable?" though the word is split on either side of her body so it could also read "Fashion Able?"

    This is the photo The Gimp Parade routinely gets 100 hits/day for. Well, it competes for most hits with this photo of Marine Lance Corporal James Blake Miller, taken about a year ago in Fallujah (make of that what you will):

    Visual description: Taken by Luis Sinco for The LA Times, it's a head shot of Miller, wearing a desert camouflage-colored helmet, face smudged with camouflage war paint, eyes staring tiredly, and a cigarette hanging from his lips. Smoke swirls around his face. The news story, linked just above, explains why this photo has been dubbed "Marlboro Man."

    I posted a link to it for Memorial Day, 2006, when I was noting that the war continues to disable people and leave them, both here and in Iraq, with less than they had before. This pic is a sort of porn too really, you know.

    Anyway, here are links to discussion at IBTP, Bastante Already, Fetch Me My Axe, and Trinity at The Strangest Alchemy, here and again here. To skip the PhD version, just read Trin's first link, and maybe the one at FMMA. The feminist tension throughout these posts seems to be basically one of radical feminist privileging of a strictly feminist media analysis over one that would be more of a disability-feminist analysis.

    Sara of Moving Right Along comments at IBTP:
    It is my fond wish that amputees be seen as just another flavor of ordinary, not extraordinary or freakish just because we don’t have all our original body parts, so ordinary that people don’t even blink when they see us coming. If we could achieve this, it would make our lives easier and richer because we could spend less of our precious, irreplaceable lives fending off other people’s projections and could instead just get on with it all. And getting images of us out there in mainstream publications showing various among us doing ordinary or extraordinary mainstream things that would be just as ordinary or extraordinary for anyone else, things like competing in sporting events like ordinary folk, even being extremely successful at it as some people are, is definitely one very good way to go about this. It is!

    However, pornification does not equal normalization.
    Even more to the point, in a later comment, Sara adds:
    ... I have to say that I pay as little attention to acrotomophiliacs (the fetishists you mention) as I possibly can. My introduction to them was via a year-2000 article on apotemnophilia (no longer available online without a subscription) which I found at the Atlantic Monthly website in 2003. This article was the first thing listed in response to an AltaVista search I’d run as my first step doing research to determine whether I’d rather have my leg off or die of cancer that year, which doctors had concluded by then were my only two immediate choices.

    Fortunately, my second result sent me to a prosthetics site showing a young woman who’d just climbed a mountain in her prosthetic leg. The blurb about her didn’t focus on her ass and say whether she’d ever modeled.

    Living as a woman, sexual objectification and obligatory attempted submission to fuckability/worth standards are implied, no matter what. The objectification I experience as an amputee is distinct from the objectification I experience as a woman in that it is not always sexual. For clarification of what I’m talking about, please see these posts:
    Talking Points: An Object Lesson at my site

    and these posts and their comments from the last Disability Carnival:
    Disabled Performing Pioneers by Marcy at Dirty Laundry
    and
    Disability and Media by Daniel at Medical Humanities Blog

    Whether we are talking objectifying amputees and other putatively or definitely disabled folks, women or men or children, sexually or otherwise, the problem is the same: people not seeing other people as people first but as objects and symbols they then have to be re-taught are human. I expect Twisty would say it all happens because of the dominance engine that fuels the patriarchy, though I also expect she’d put it better.

    You might think it’s only bad when you’re being sexually pornographied. However, there are lots of ways to demean people by objectifying them. Consider this: Yesterday, in walking from my car to the post office, maybe half a block, I had two perfect strangers come up to me and basically tell me I was a brave woman for leaving my house. One came up from behind asking “How’s the leg working out for you?” (And I was wearing really cute shoes!) The other one told me right to my face, with tears in her eyes — you know, instead of “Hi, how are you?” — “You’re a brave woman!”

    This kind of thing happens to me everywhere I walk. I would find it inhibiting if I weren’t already so shopworn.

    When I was young, I couldn’t leave the house without being pestered by some man about my tits and my ass. Now I can’t leave my house without being congratulated for my [projected] courage by complete strangers.

    The objectification escalates. And it’s all the same dynamic, even when it’s not strictly sexual.
    Mainly, I wanted to put Sara's remarks in gimp context, so they wouldn't surrender to the archival oblivion at Twisty's. Trin takes issue with other IBTP commenters who suggest photos of Mullins in SI would be better if she were au naturel, that is sans prosthetics:
    Heaven forbid your assistive technology make you hot. It's supposed to look all klunky and weird and alien so we can pity you. Didn't you get the rulebook?
    Personally, I'd love to see Sara and Trin hash this out as two disabled women (though I know Sara cringes a bit with that identification) who seem to disagree. My guess is that they don't so much disagree as they see different aspects of the radical feminist analysis that need to be emphasized from a disability perspective.

    My perspective: Mullins appears to be the amputee soft-porn that causes most people to show up at this blog, and I suspect they're not hanging around to read the latest on Kevorkian or the anniversary of the Olmstead decision. And blogging ego aside, I do have a problem with that.

    On the content of the SI article itself, this is what really caught my eye:
    [Mullins] owns 10 different sets of prosthetic legs, from her titanium sprinting legs ("my brother calls them my 'robo-cop legs,'" she laughs) to the intricately carved ashwood museum pieces she once modeled in a fashion show for designer Alexander McQueen.
    Share the irony with me: I recently commented on something written by a woman temporarily using crutches and wheelchair who repeatedly referred to her "life without legs." And here's Mullins, a double-amputee who talks about her ten different pair.

    I also want to know how she accumulated her legs. Do they all work? Are some spares or gifts because of her relative fame? How many, on any given day, might be useful enough that she decide between them? At one point I owned as many as four wheelchairs and scooters. I think there are three around here just now, but I'm sitting in the only one that is suitable for anything but an emergency. The one in the garage (bought around 1990) may not work at all, and the one in the basement (Quickie manual, circa 1985) would cause me great pain and discomfort if an emergency arose and I found I needed to use it, though it would get me from here to the can.

    Are Mullin's ten pair extravagance or simply spare parts, like mine? And is there anyone in the world who can claim more pairs of legs than her? I mean, there are lifetime amputees who've never had a single prosthesis or wheeled chair. Does Mullins have crutches and chairs, as well? That would be the story here for me. Well, unless we can just talk about an impressive woman with many accomplishments, without the supercrip theme.

    Tuesday, July 03, 2007

    Wiki frenzy

    There are several new wikis focusing on disability information that have popped up recently. Like with all wikis, they're a work in progress open to anyone who wishes to contribute. Here are the links:

    Disapedia
    Wikibility Rights
    Civil Rights WikiSpace, with dis info here and here

    Slumgullion #40 -- Let's Hear it for the Boys edition

    Most disability bloggers seem to be women, but the mens got good things to say too:

    "My guide dog is about to retire" by Damon at Do Your Worst:

    My guide dog Liam, who I've had for seven and a half years, will be retiring at the end of this week. He's now nine years old. Liam is a bit of a stressy sensitive dog so this seems the best time to retire him.

    So, what does this mean. It means that Damon has to go back to using a white cane - something he hasn't done since leaving school in 1991.
    "The Pitfalls of Pity" by Gordon Cardona at Gordon's D-Zone:
    It was when on the local newspapers and media I get to know that my best friend had received a prize for ‘helping his poor crippled friend’ (me that is). I was speechless and betrayed. At first I blamed my friend for it and said I wouldn’t trust him any more. But then I knew that it was all about the way society viewed people ‘like me’ that was the cause of it all.

    I suddenly felt inferior and felt betrayed by my teachers, my schools and all the institutions that supported this prize. Sadly, this prize goes on every year and guess what? Non-disabled boys and girls still receive this prize for ‘being friends’ to their disabled ‘less fortunate’ friends.
    Was it only last September that Mark Boatman at NodakWheeler escaped from a nursing home? The vent-using quadriplegic had to leave his home state to do it, but since he moved to neighboring Montana he's got a pet dog, seen The Rolling Stones in concert, and now he's heading off to college. Check out his adventures in the many photos he posts.

    "On Being Married to Big Foot" by Stephen Kuusisto at Planet of the Blind:
    She can clean dog hair off the kitchen floor in less than two minutes with her feet. This is a kind of domestic dancing that even the ancient and labyrinthine Gods and Goddesses of Knossos would take their hats off to, but of course they didn't have hats, which is probably why they died out if you stop and think about it.
    "Livin’ la vida corta" by Michael Bérubé at Pandagon:
    And I hope I haven’t given people the sense that everything is just wonderful with Jamie all the time, and that Down Syndrome isn’t such a big deal if you just take the Right Attitude. (There’s a little story in the DS community about how having a child with DS is like winding up in Holland when you’d planned to go to Italy, and while this story serves the crucial function of reassuring new parents that their lives are not ruined or blasted or just plain over, it’s really not a very good analogy, in the end.) There’s a reason why so many Jamie Stories involve me taking him on trips or playing golf with him or going to aquariums and zoos with him: it’s not like he has friends. Oh, people are mostly very nice to him, and kids greet him cheerily in school and in town, and his teachers and aides like working with him, because he’s a great kid. But he doesn’t have the kind of social network other fifteen-year-olds do; he doesn’t do sleepovers and play dates and just hanging out. (When Nick’s friends were here last month — and Nick’s friends are absolutely wonderful to Jamie — I told Jamie he could stay up until midnight and hang out with them. After a few minutes he came into my study, sat down, and said dejectedly, “I don’t know how to hang out.” I explained that he didn’t really have to do anything at all; he could just sit in Nick’s room and listen to what everyone was saying. But, of course, he was quite right. You have to know how to hang out before the invitation to hang out makes any sense.)