It hurts me a little bit to post this ad for discussion. I participated in protests at my university when the sports department contracted with Nike. I overcame my significant fear of public speaking to join with a local union and represent NOW to the Board of Regents. That was a decade ago and Nike still sucks.
But they do have this commercial (also embedded below) airing this weekend that will feature Paralympian basketball player Matt Scott. The news about the ad:
Nike's New Year television commercial will feature University of Wisconsin-Whitewater wheelchair basketball player Matt Scott.
Scott, a senior from Detroit, Mich., and a member of the U.S. Paralympic Basketball team, will appear in Nike's "No Excuses" commercial. The spot is the latest in the company's series of "Just Do It" ads.
Throughout the commercial, Scott bounces a basketball and takes shots at the hoop, while reciting a long list of excuses people use to avoid working out and staying in shape. The spot ends with Scott in his wheelchair, slamming down two basketballs simultaneously and saying the final excuse, "And my feet hurt." He then wheels out of the gymnasium.
The commercial will air on New Year's Eve on ESPN and MTV and on New Year's Day on FOX, ESPN, the NFL Network, BET, the Comedy Channel, FUSE, ABC Family and others. "Overcoming a disability and striving for athletic excellence is certainly not for the weak," Scott said. "I am proud I was chosen to represent disabled athletes and show that we do not make excuses."
The brief description of the ad above is not bad. Scott is a large attractive black man wearing a black Nike shirt and a black knit cap. The ad is a full minute long and while he offers all the common and ridiculous excuses people give for not exercising, he bounces a basketball out of camera view. The camera moves and the shot is repeatedly edited so that his wheelchair does not show until the final image of him turning and wheeling from the gym.
The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie's story and the larger issues. Comments everywhere have been... illuminating.
I haven't written about this before now because these sorts of articles from the mainstream media -- this one involving children, parental control of a child's well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, "special needs" schooling, and "right-to-die" versus the right to not be coerced to die -- contain so much information that is either misleading, incomplete or biased that I can't think where to begin.
Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.
Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I'm not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn't discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article's end:
Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie [Katie's four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.
Besides, anything that beeps isn't allowed in the Jones house.
"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.
The group hug part is completely untrue. I've had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It's actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.
And the "no beeping rule"? There's the real reason for the DNR right there. Better dead than using a machine that might make some noise.
I understand machines are scary. I get that because I've needed to make my own adjustments to them and also because I see it in peoples' eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I'll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.
I'd like to hear much much more about the Jones' "no beeping rule." Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie's parents don't feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die "peacefully" from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?
It's not really the beeping, of course. And the answer to Trinity's question:
Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?
seems to be that it didn't seem relevant to the point of the article. Katie's consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.
Further discussion can also be found at Wrong Planet, an online forum for people with Asperger's Syndrome.
"I'd been suffering from depression for some years, which I don't think is a surprise for anyone to learn," she said. "When my third child was 5 months old, it got more severe. It's all under control, and I'm on the drugs.
"My life is much better. I've settled down a lot more. I have a lovely boyfriend, and I'm happy with my kids. It's a much more normal, kind of quiet life."
And yet, this is how that very article begins:
This may be hard to believe, but Sinéad O'Connor says she is trying to live a normal life.
That's the same O'Connor who tore up the pope's photo on "Saturday Night Live," bore four children with four different fathers, declared her lesbianism and then denied it, was ordained a priest, made a record of reggae tunes and now one of songs about God.
To prove she's trying to be normal, the Irish pop star promises to sing some oldies, including her classic, "Nothing Compares 2 U," when she performs Monday at the Pantages Theatre.
There's a lot that could be unpacked there -- normalcy versus political protest of Catholicism, normalcy versus motherhood via serial monogamy, normalcy versus sexual exploration, normalcy versus religious exploration and normalcy versus musical exploration. Admittedly, O'Connor's turbulent past has played out publicly to the curiosity of many. And, yes, she discussed finally being diagnosed as bipolar on Oprah this past fall, but I've always thought of O'Connor and her passionate music and politics as intrinsic parts of her character rather than symptoms of being abnormal. You know, part of what makes her voice so original and her music so captivating.
Other good linkage:
Recent SFGate interview about bipolarism, depression, religion and O'Connor's newest album Theocracy
Here's YouTube video of one of my early favorites from The Lion and The Cobra. "Troy" performed live at the 1988 Pinkpop Festival, just her and her acoustic guitar before an audience of thousands. The song seems to be about a lover, and refers to both the legend of the ancient Greek city of Troy and W.B. Yeats' poem "No Second Troy."
Lyrics:
I'll remember it And Dublin in a rainstorm And sitting in the long grass in summer Keeping warm I'll remember it Every restless night We were so young then We thought that everything We could possibly do were the right Then we moved Stolen from our very eyes And I wondered where you went to Tell me when did the light die You will rise You'll return The phoenix from the flame You will learn You will rise You'll return Being what you are There is no other Troy For you to burn
And I never meant to hurt you I swear I didn't mean Those things I said I never meant to do that to you Next time I'll keep my hands to myself instead Oh, does she love you What do you want to do? Does she need you like I do? Do you love her? Is she good for you? Does she hold you like I do?
Do you want me? Should I leave? I know you're always telling me That you love me Just sometimes I wonder If I should believe Oh, I love you God, I love you I'd kill a dragon for you I'll die But I will rise And I will return The Phoenix from the flame I have learned I will rise And you'll see me return Being what I am There is no other Troy For me to burn
And you should've left the light on You should've left the light on Then I wouldn't have tried And you'd never have known And I wouldn't have pulled you tighter No I wouldn't have pulled you close I wouldn't have screamed No I can't let you go And the door wasn't closed No I wouldn't have pulled you to me No I wouldn't have kissed your face You wouldn't have begged me to hold you If we hadn't been there in the first place Ah but I know you wanted me to be there oh oh Every look that you threw told me so But you should've left the light on You should've left the light on And the flames burned away But you're still spitting fire Make no difference what you say You're still a liar You're still a liar You're still a lawyer
Today was another Parts Replacement Day and all seems to have gone especially well. When I made this appointment to swap my feeding tube for a fresh one, I requested Doc A, mainly so that I would not get Doc B.
I got Doc C. (Yet another example of how a client of medical care must at all times be prepared to decide if she needs to make a stir or trust the moment or something else. It always seems to be ad lib.)
Doc A was doing something emergency-like, and I vaguely remember Doc C from when I was in hospital. In any case, one of the excellent support staff mentioned that he had, in fact, trusted Doc C with this procedure on his very own mother. The chatter between C and his staff about hockey relaxed me. Seriously, flying pucks, chipped sticks and dislocated shoulders are soothing and familiar discussion.
I didn't need to defend my use of this feeding tube to anyone (Doc A) and I didn't need to fear lack of expertise (Doc B). Also, they took great care to minimize the use of the poop-liquidizing contrast dye, so all is truly well. As my brother has said: "The key to life is a happy colon."
Ari Ne'eman, president of the Autistic Self-Advocacy Network (ASAN) that led the protest against the NYU Child Study Center's "Ransom Notes" ad campaign, announces:
I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that announcement here (at the NYU Child Study Center's website). The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.
Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.
Thank you to all of you who have made this victory possible. Remember: "Nothing About Us, Without Us!"
It didn't look promising at first. This past weekend the images of the ads at the Child Study Center's website were briefly taken down, but they were back up when the New York Times Sunday coverage of the ads quoted Koplewicz as saying the Center was determined to "stick with it and ride out the storm" and even expand the campaign to four other cities soon.
Kristina Chew, PhD., who blogs at Autism Vox and was also quoted in the NYT article, has been providing relentless commentary, coverage and linkage to dozens of blogs writing about the ads. To follow those posts chronologically go here, here, here, here, here and here.
Or check out Furious Seasons where Philip Dawdy makes some interesting connections in noting that Koplewicz co-authored a study of Paxil for the pharmaceutical company Glaxo SmithKline that apparently exaggerated benefits and downplayed adverse effects in treating adolescent depression. Koplewicz is one of dozens of co-authors of that study, but Dawdy wrote earlier this year:
"Some very smart people have taken on many of the issues around Study 329 and Paxil/Seroxat and, based upon the evidence, I'd have to say that it's fair to assert that none of us in the patient world should trust anyone who had a hand in the study (unless they want to suddenly recant the work) on absolutely anything they say about mental illness. At a minimum, we should be wildly skeptical of any claims they make."
Dawdy hasn't been the only one to speculate about what corporate interests might have connections to the Ransom Notes ad campaign. Many commenters to the NYT article wondered about possible pharmaceutical backing for the ads, though I've seen absolutely no direct evidence of this. It seems to have been yet another case of do-gooders offering a message that didn't take into account the experiences and feelings of those they set out to help.
In the Center's announcement of the end of the ad campaign, Koplewicz writes:
Though we meant well, we've come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.
Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.
We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.
TGP reader Stu Russell shares this photo from Malaysia. He writes: "The disabled in Malaysia are not well catered for, but the NGOs representing the disabled are fighting hard to get a better deal, and for Universal Design.
"As a follow up to your latest post, [this] is a photo taken yesterday on a Malayan Railway Commuter train heading south from Kuala Lumpur to Seremban. A section of seats had been permanently removed, but the sign remained saying 'Priority Seating' with symbols showing those persons who are aged, pregnant, have walking difficulties, etc.
"All but one or two rail road stations are totally inaccessible to those using wheelchairs, and access if difficult for those with walking difficulties and the elderly, or the infirm."
Photo description: Pretty much at Stu describes, it's a color photo of the inside of a commuter train car where there are no seats at all, just a pole and a window on the car's side showing a sunny day beyond. But a small sign on the wall reads in... Malaysian?: "Keutamann Tempat Duduk -- Priority Seating" with stick images of four people sitting. A person with a baby, a pregnant woman, a person with a cane and a person with a casted leg and a crutch.
And this bewildering sign from Flickr photog andreeainjapan: A big sign, black with white lettering, posted outside of a public toilet apparently for the disabled is in Japanese with this English translation: "The direction of companion mind should cooperate with rescue at lighting of a red lamp, or a buzzer. Please give me connection from a nearby extraordinary telephone."
And a sign for some really exclusive seating in China. A seat in an airport public waiting area in Shanghai boasts a bright yellow sign with red lettering in both Chinese and English. The English part reads: "THE OLD WEAK SICK DISABLE AND PREGNANT ONLY." Flickr photo by DiscoContinental.
In "Blackface/Yellowface/*face" Wheelchair Dancer muses about identity politics, performance arts and disability culture:
Despite years of discrimination and oppression and despite a history that is as appalling as the histories of other minoritized groups, there is no performing arts context for disability face. And even though exaggeration of certain physical aspects of certain impairments, there (perhaps fortunately) has not been a systematic reworking of these localized moments into a "tradition." Any attempt at disability face would look like a party costume. And that's kind of the impression I get when I see non-disabled types acting disabled roles.
So, over to you. What would disability face look like? Would you be able to distinguish disability face from disability drag? What would disability drag look like (and here I really do mean *drag,* as opposed to *dress up*). Could PWD with one impairment drag another? Could you drag your own impairment? Or would it have to be non-disabled people dragging disability? When does drag become disability face?
Could there really be a set of performances of disability in which we can separate an actor dressing up as disabled in order to create, with some degree of verisimilitude, a disabled role (because you *know* there are no disabled actors who can do this kind of stuff) from someone in disability face? Would it have to be literally a "face" to be disability face?
Other posts by Wheelchair Dancer on the intersection of race and disability include this, this, this and this.
Since I posted this at The Gimp Parade last June, Boys on Wheels has been a fairly major contributer to my site's daily visitor hit count -- easily 30+ hits per day. Obviously people are fascinated enough to Google. So, what do you think?
Funny or not so much?
Direct YouTube link here. (Or at the bottom of the post.)
The lead singer of Boys on Wheels is Jesper Odelberg and he is a guy with cerebral palsy, as well as part of a Norwegian comedy show. The four-minute video linked above is a montage of rock songs with lyrics slightly altered. Subtitles are provided in the language each song is sung in. For example, the first song is in Norwegian, the second is a spoof on the '80s hit by Norwegian band A-Ha: "Take On Me," instead called "I'm Not Gay." Bryan Adams' '80s power ballad "Heaven" has been altered so the lyrics begin:
Baby, you're all that I want, but you're living on the fifth floor. I'm finding it hard to get there, in my wheelchair.
Bon Jovi's "Living On A Prayer" is spoofed as "Living In A Wheelchair." Three men in power wheelchairs sit on a stage with dynamic colorful lighting. Sometimes the two backup guys do some dancing with their wheelchairs. Odelberg's costume changes to match the song, with '80s-era Bon Jovi hair and clothes for the last song.
The latest Disability Blog Carnival is up at Andrea's Buzzing About, where the theme is "A Few of Our Favorite Things." Check it out, or look through past carnivals.
Connie Kuusisto hosts the next one at [with]tv on Thursday, January 10, with submission deadline the Monday before.
Image description: Blue text lies over a line drawing of a old-fashioned back brace that look like an elaborate, longer corset. The text reads "the Disability Blog Carnival -- a bracing event."
We have your son.We are destroying his ability for social interaction and driving him into a life of complete isolation. It's up to you now…Asperger's Syndrome
The NYU Child Study Center has a new public education campaign designed to create awareness of psychiatric disorders. Ads appearing in magazines and on NYC billboards and kiosks are mock ransom notes signed by specific psychiatric disorders: ADHD, Asperger's Syndrome, autism, bulimia, depression and OCD. Here's the ad for bulimia (click on the ad below to see it larger or read text description here: Cut and paste words from magazine text form a ransom note: "We have your daughter. We are forcing her to throw up after every meal she eats. It’s only going to get worse. --Bulimia" Below the note the ad says, "Don't let a psychiatric disorder take your child" and gives info for the NYU Child Study Center.):
Text for the other ads reads:
We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning…Autism.
We are in possession of your son. We are making him squirm and fidget until he is a detriment to himself and those around him. Ignore this and your kid will pay…ADHD
We have taken your son. We have imprisoned him in a maze of darkness with no hope of ever getting out. Do nothing and see what happens…Depression
We have your daughter. We are making her wash her hands until they are raw, everyday. This is only the beginning…OCD
The NYU Child Study Center, celebrating its tenth year and the relaunch of its public information website AboutOurKids.org, says:
The idea behind the “Ransom Notes” is that, all too often, untreated psychiatric disorders are holding our children hostage. These disorders rob children of the ability to learn, make and keep friends and enjoy life.
"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We understand the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.
And people are joining the dialogue. The Autistic Self-Advocacy Network (ASAN) has gathered 14 other disability rights organizations and issued a joint letter (.pdf file) calling for withdrawal of the ad campaign. (There's also a petition for anyone to sign in support of the ASAN joint letter and appeal.) In part, the letter reads:
While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.
and
Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them.
The letter also notes that the ad campaign supports the idea that people with these psychiatric disorders -- note that autism and Asperger's Syndrome are labeled psychiatric disorders here -- may be dangerous to others around them.
Does anyone else's mind jump to Columbine-type scenarios when they see "children" and "hostage" linked? Mine did.
This doesn't always amuse me, but the persistent need to identify disabled persons' nearby presence -- distinct from identifying disabled access or other services -- does often crack me up.
"Ohmygod! They're lurking somewhere close! Those people you try not to stare at and never know what to say to. Look out! They're here!"
Photo descriptions: The first photo is a blurry color image of a yellow warning sign with the silhouettes of a man and woman walking. Below, a smaller yellow sign explains, "DISABLED." Flickr photo by dinaAZ.
Second photo is a color image of a white triangular warning sign with a red border. The silhouetted image is of a person riding a horse and a white sign below this one explains, "Disabled riders." Flickr photo by octa 2 yossie.
The third photo is a close-up of a big white sign with block letters. In red and underlined: "WARNING" followed by black text: "ELDERLY AND DISABLED PEOPLE." Flickr photo by markydeedroppics.
Last year alone, seven inmates killed themselves, and another's attempt left him brain dead; four have taken their lives so far this year.
Department of Correction officials say the suicides are random and unrelated. But a Globe Spotlight Team investigation of the deaths and detailed reconstruction of how they occurred found that they were far from random.
Most of the suicides came after careless errors and dangerous decisions by correction officials and the staff at UMass Correctional Health. And the trail of violence is far wider than the number of dead would indicate, as hundreds more inmates each year have wounded themselves or attempted suicide.
In fact, such incidents are soaring.
So common has it been to find a man with a makeshift noose around his neck that some correction officers have taken to carrying their own pocket tools to cut them down. The tally of suicide attempts and self-inflicted injuries - 513 last year and more than 3,200 over the past decade - tells a story of deepening mental illness and misery behind the walls of the state's prisons, despite repeated calls for better training of officers and safer cells for mentally troubled inmates.
Robert Wyatt is a music legend you may never have heard about. He was a singer and drummer of the '60s psych-jazz band Soft Machine that emerged out of Canterbury, England, along with Pink Floyd. Later, he fronted the band Matching Mole. In 1973, drunk at a party, he tumbled out a third story window and ended up paralyzed from the waist down. A lead singer with stage fright, he has said of the accident: "What could have been debilitating turned into an excuse to work in a different way without the pressure and responsibilities of performing or being in a group."
Thus began a solo career that continues with this fall's release of Comicopera, his tenth solo album of original work, though he's perhaps best known for his cover of Elvis Costello's "Shipbuilding," a touching song about the Falklands War. Here's a live video BBC performance:
Description: Wyatt, holding a microphone in both hands, sits in a traditional steel wheelchair on a darkened stage surrounded by his band. He wears an olive military-styled shirt and a black beret, with longish blond hair and a fullish beard.
The lyrics to "Shipbuilding":
Is it worth it A new winter coat and shoes for the wife And a bicycle on the boys birthday It's just a rumour that was spread around town By the women and children Soon we'll be shipbuilding Well I ask you The boy said dad they're going to take me to task But I'll be back by Christmas It's just a rumour that was spread around town Somebody said that someone got filled in For saying that people get killed in The result of this shipbuilding With all the will in the world Diving for dear life When we could be diving for pearls It's just a rumour that was spread around town A telegram or a picture postcard Within weeks they'll be re-opening the shipyards And notifying the next of kin Once again It's all were skilled in We will be shipbuilding With all the will in the world Diving for dear life When we could be diving for pearls
Among music trivia buffs, Wyatt may be known as the only person using a wheelchair to ever perform on Britain's Top of The Pops. The details range from funny to appalling. He was asked on the popular, long-running music chart TV program to sing his cover of The Monkey's "I'm A Believer," which he reportedly chose to record in the first place because he thought it was written by Neil Sedaka, whose music he claims to enjoy. Except "I'm A Believer" was written by Neil Diamond, which every British '60s experimental psych-jazz musician should know, right?
An argument ensued with Top of The Pops producers when they told him he needed to sit in a regular chair while performing because sitting on stage in a wheelchair was "not suitable for family viewing." This was 1974. In one 2002 account of the event:
A furious Wyatt stood his ground (metaphorically) with the end result that the entire band appeared in wheelchairs, and Wyatt spat out the lyrics with barely concealed venom and even more naked irony. The performance has never been shown anywhere since.
The most complaints the show received for a single episode was in 1994 when Manic Street Preachers performed their song "Faster" in a manner that was seen as intimidating and featured lead singer James Dean Bradfield wearing a balaclava such as would be worn by an IRA terrorist. Prior to this the performance that was rumoured to have drawn most complaints was Robert Wyatt performing his hit "I'm A Believer" in as animated a fashion as his wheelchair would allow.
You can judge the performance for yourself. Here's the YouTube video (that's Pink Floyd's Nick Mason on drums):
Another stage performance with an audience standing and dancing close to the stage. Wyatt sways in his chair as he sings. A hard-to-read text over the video indicates that this clip was missing and presumed lost for nearly 30 years. Either way, Wyatt's wheelchair evidently caused a stir for daring to show up on TV.
Then again, music trivia buffs may know Wyatt because his name has become a verb: "Wyatting" refers to the pub entertainment of intentionally picking a jukebox song that will empty the establishment.
All the above links to articles are entertaining because Wyatt is a character. Here are some other good links:
Update: First, apologies that my videos don't stay where they're placed within my text but migrate downwards. I don't know why they do that.
Also, thanks to Jennifer Justice in the comments of this post, here's a direct link to an audio file of the October 26 episode of "Sound Opinions" from Chicago Public Radio. There's some Britney Spears first, to skip directly to the discussion of Wyatt go to about 10:30 in the audio recording.
Yesterday, a Canadian parole board in a prison near Victoria denied day parole to Robert Latimer. Latimer is the Saskatchewan farmer serving a life sentence for the second-degree murder of his 12-year-old disabled daughter back in 1993.
Some facts: Tracy Latimer acquired cerebral palsy from oxygen deprivation at birth. She was unable to walk or talk and had seizures every day, but she could smile, laugh and cry. She went to school each day on a bus, she could communicate likes and dislikes. She recognized the people she loved. Tracy had several surgeries and was scheduled for a fourth on the day of her death. (The back surgery she had to correct scoliosis and the complication afterward of a steel bar migrating in her hip sound identical to my own Harrington rod surgery experiences.)
On October 24, 1993, Robert Latimer placed his daughter, Tracy, in the cab of his pickup truck, connected a hose to the exhaust, ran the hose in the vehicle's window and gassed his daughter to death. He hid the evidence and lied about her death until an autopsy revealed foul play. Then he confessed.
But he has never expressed remorse, which is why he was denied parole:
The parole board decided the 54-year-old Saskatchewan farmer had not developed any insight into his crime. Latimer insisted during his parole hearing Wednesday that killing Tracy was the right thing to do.
He remained unapologetic and angry at the legal system.
"The laws are not as important as Tracy was," he said.
"I still feel don't feel guilty because I still feel it was the best thing to do."
While there's always been a frightening and enraging degree of support for Latimer's actions (which, interestingly, played out while Susan Smith was simultaneously being castigated for the murder of her nondisabled children in the U.S.), much of the fervor has been about the mandatory sentencing that required him to serve at least ten years in prison. The Canadian Supreme Court overturned a lighter sentence that failed to follow sentencing guidelines. He's currently spent seven years in jail.
In an appeal to his conviction, Latimer contended that he "had the legal right to decide to commit suicide for his daughter by virtue of her complete lack of physical and intellectual abilities."
Grant Mitchell, a lawyer representing disability groups in relation to the case, said yesterday:
"I think it's really sad that he's still maintaining that he committed no crime ... that killing a member of his family was a private matter that the public had no business getting involved in. And I think it's particularly concerning that when he was asked by the Parole Board whether he would do the same thing if another member of his family were in distress, he said he wasn't sure what he would do."
I agree with Mitchell. More importantly, I agree with the guilty verdict that holds Latimer accountable for murdering his daughter. I am less certain how much time in prison is appropriate, but since Latimer reportedly wished to use his day parole to spend time furthering the cause of euthanasia, I'm content that he remains in jail.
A Chinese woman by the name of Wang Fang declined a disability pension despite being born with feet that face backwards. This is news in Britain, if only, perhaps, so the intriguing pictures of the 27-year-old waitress and resident of Chongqing could be presented for the public to view.
Apparently, Wang's visibly different feet automatically qualify her for a disability pension in China, but she's refused both the "disabled" identity and the cash.
"I can run faster than most of my friends and have a regular job as a waitress in the family restaurant," she says. "There is no reason to class me as disabled. I'm like everyone else - except of course that I put my shoes on backwards."
She does wear her shoes backwards, and it appears that while her feet do truly "face backwards" they are not literally attached backwards so much as bent back so that she walks on the tops of her feet. (Visual description of the two photos here: Wang stands at the edge of some stairs next to another woman in the first photo, the camera shooting from below to show Wang wearing red bootie slippers worn backwards, with the heels facing the camera. In the second pic, Wang sits on a bench next to a child -- probably her five-year-old son -- while the same woman from the first photo supports her outstretched legs at the ankles. Wang, grinning broadly, is slightly blurred in the background, with the focus in the foreground on her bare feet. They are, indeed, turned backwards, and also small, wide, swollen, deeply callused and her toenails appear visible where most of us have pads on the underside of our toes.)
It looks painful. And it's fascinating, of course. That's why the pictures-- and the story as a whole -- exist in Britain's Telegraph. The news is that she denies being disabled or needing government money. The photos are evidence that she is visibly deformed and "legitimately" disabled. This little feature is newsworthy because she's interesting to gawk at. The story is too short to inform readers of any details about who Wang really is or what might be her true circumstances or full reasons for turning down the pension.
What caused her feet to form this way? Is it common? Is there medical treatment that could have "normalized" her feet when she was a child? Would that have been helpful or completely unnecessary? Does she need special shoes or wear the big slippers all the time? Is there pain? Are there work accommodations that help her? If her waitressing job wasn't in her family's restaurant would she be employable in China? If her family didn't have her as a waitress, would the business fold under the simple strain of paying another employee? How would that disability pension compare to a waitress' paycheck? Would she have to give up her job (and paycheck, if the family business issues her one) if she accepted the pension? That last is almost certainly true.
We learn nothing of that, yet here is what the Telegraph makes sure to report:
Ms Wang, a mother to a five-year-old boy - whose feet face the more usual forwards - is not looking for sympathy, and is certainly no benefit scrounger.
Her son is normal and she is not one of those "benefit scroungers," you see.
Here are some basic facts about disability in China that might have enriched what is otherwise a "freak show" feature:
According to the China Disabled Persons' Federation there are about 83 million disabled Chinese out of the total population of over 1.3 billion people. That's less than seven percent. (By comparison, the 2000 U.S. Census (.pdf file) estimates that over 19 percent of non-institutionalized American citizens aged five and older have a disability. That's about 50 million and is considered by many to be a gross underestimate, depending on definition of disability used and how inclusive the count really is.)
Currently, only about seven percent of the one million disabled in China's capital, Beijing, are employed. Other statistics are similarly grim, though the Paralympics, the Olympic event for disabled people that directly follows the Olympics themselves, is coming as part of the required commitment a host city must provide for the international sport celebration. Great hopesare pinned on all the accompanying accessibility China must create in Beijing and the lasting improvements it may provide for disabled Chinese.
Disabled children sold into slavery to become street beggars for racketeers in Beijing are a significant social problem, and the coming Beijing Olympics likely mean that one way or another these young beggars will be removed from the public eye. Thus, Wang -- able to walk and run, employed, living with her family -- is likely among the "elite" disabled in China.
Still, it's likely that for purely financial reasons (never mind the social and cultural ones), Wang could not afford to accept disability status and the accompanying pension. Or, since she's able to walk, run and work, she shouldn't qualify at all for the pension, right? But then there'd be no story or reason to publish those photos.
I blogged about it back in early November. You voted for her. She won!
The award money will go toward her latest production, "a film-based installation about the Nazi mass-murder of disabled people and contemporary echoes." I will be talking to Liz more about that later this Spring. Visit her site Roaring Girl Productions to learn more about her work.
I wasn't going to offer a Best of 2007 list of my posts this early because I'm an optimist and I like to think genius may strike me in the next three weeks. But for those who may be reading my writing for the very first time, here are five of what I think are my best blog posts of 2007. Plus a couple bonus posts.
Blind Rage and the legacy of Helen Keller -- Because I originally began The Gimp Parade to review books about disability, and more importantly, because Blind Rage is a fantastic book by a disabled feminist about the world's most famous disabled feminist.
I am tired -- My expression of how last winter's Ashley X debate affected me and the disability community online.
Is Roger Ebert a disability activist? -- When I wrote this, I inadvertently prevented comments to the post, so I never learned what others think about Ebert's "activism."
Bonus link: Because language use came up in comments to my Alas intro post, here's a blog entry on that topic: Linguistically disabled?
Hi all. My name is Kay Olson (known in the past and in the archives here as Blue or Blue Lily) and I write over at The Gimp Parade about disability. I blogged here as a guest last year, but Amp has asked me to join Alas as a regular co-blogger and I'm thrilled to be here.
A little about me: I'm a 39-year-old Minnesotan. I live in the small rural town I was born in, though I went to high school in Naperville, Illinois, and got several college degrees at Arizona State during my 13 years living in Tempe. My degrees are in English, political science and public administration and wherever possible in my studies I explored minority or diversity issues -- when disability wasn't an available option, I studied race or gender or any intersection of these identities.
I was born with a rare progressive neuromuscular condition that falls under the umbrella of muscular dystrophies. I've used a wheelchair or scooter for all mobility since 1983 when I was in ninth grade, and for the past two years I've had a feeding tube, a trach and used a ventilator full-time for breathing. Technically, I am unemployed, but I spend much of each day with people employed to help me 24/7, training them, managing their care of my needs, helping with scheduling, medical supplies, etc. I am a source of income for two full-time LPNs and up to five part-time LPNs and RNs, not counting the agency I must go through for their state-paid assistance. I live with my parents in a house they were able to build with full accessibility in mind, though I very nearly ended up in a scary nursing home less than two years ago. As you might imagine, if you haven't already visited my blog, I write a lot about my experiences with the medical community and how they are shaped by politics, bureaucracy and disability stereotypes and prejudice.
My hope here at Alas, other than writing coherently on a regular basis and learning from discussions, will be to bring current disability issues to a wider audience, put them into a feminist context when possible, and promote the writing of other disabled folks online. Mandolin's lovely October post, "Feminism is not your expectation," linked my blog as the sole example of disability in feminism but there's an incredible variety of disabled feminist bloggers out there I'd love to see recognized.
So, although I don't know if all these bloggers proudly identify as feminists, here is a list of some great disability bloggers that often speak to issues of feminism as well. Although this particular list doesn't include any non-Western disabled bloggers and very few disabled male bloggers (the latter are either less likely to be making connections between being a woman and disabled, or I am less apt at seeing the connections they make), it is otherwise fairly diverse with regard to age, race, ethnicity, religion, sexual orientation and disability:
Image description: The black-and-white photograph is the upper back of a man with a tribal art tattoo across the shoulders and the following "tattooed" just below: "NaBloPoMo '07 Mission Accomplished" with a little skull image after the "'07". Sara made this and the one from the beginning of the month, which I will leave in the sidebar at right for a while because it's cool. Cooler than me, actually.
So. One mission accomplished and another about to begin. Tomorrow I will begin blogging at Alas, A Blog on a regular basis. I've guest blogged there before for a month-long stint, and now Barry (AKA Ampersand) has asked me to be one of his regular co-bloggers. I'm excited about this for a variety of reasons, and I'll say more about it tomorrow, but two things for now:
First, everything I post over there that is disability-related will also be posted here, and some of the sillier stuff here won't all appear over there. The Gimp Parade won't change except that a couple times a week I'll make a point of writing something that will hopefully be interesting for the larger audience over there to read and maybe even discuss. Content here might possibly improve. Plus, I will be able to keep the focus here on disability and use Alas for occasional writing on non-disability stuff that I am often itching to talk about but don't want to use The Gimp Parade for.
And second, I know that some of my strongly anti-porn radical feminist friends won't want to click over there to follow discussion and might be upset I'm contributing there. (No, Amp isn't in the porn business and you won't find porn at Alas, but about a year ago he did sell his domain name in order to pay some bills. The buyer does link to porn, and you can read more about all that here.) I'm not categorically against porn, and while I could say much more about that, I won't just now. But I hope those uncomfortable with participating at Alas will continue to do so here.
What I will say is that Amp has always been committed to inclusion of disability issues on his blog and in discussion of diversity generally. He and I don't agree on everything about disability. For example, there've been long threads on personhood and Terri Schiavo at Alas that made me want to scream and tear my hair out, partly for Amp's contributions and partly for the tone of many commenters. Step outside the disability blog niche and many (if not most) discussions of disability are much more contentious and not as crip-friendly or nuanced to our experiences. I don't expect this will have changed and while I will personally find it very challenging -- partly because I lose patience and interest when thread comments run into the hundreds -- I don't think it has to be a bad thing.
Amp and I have been discussing disability and other things in various online forums for about eight years now, beginning at the long-defunct Ms. Magazine Boards. That predates this blog by about four years. So, I have trust in Amp's commitment to disability issues and inclusion of the disability perspective in any and all debates at his place, though as I've noted the community of people who comment there are not all of like minds. I hope readers will join us over there to enrich the discussion of disability. It's bound to be interesting.
Ms. Crip Chick riffs off of recent critiques of women's studies programs that offer only token examples of women of color by discussing token committee membership experiences or what she calls "crip on a stick"
Mik Danger at Coffee and Gender posts on the use of the ADA to provide physical and financial safety against trans hate and discrimination in "In and Out of My Body"
Cilla Sluga at Big Noise writes about the difference between offering help and teaching empowerment in "No Short Cuts"
Image description: A poster from Northland Poster Collective. On a beige background with a woodcut texture, bold black text reads "If you have come to help me you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together. -- Aboriginal Activist Sister"
I've been posting images of art about disability that I've found on Flickr lately. But there's a program in Uzbekistan that uses art to help integrate disabled children with their nondisabled peers. From a Unicef news story:
Renata Karimova among over hundred of children does not suffer the fate of many other peers. Having come to the "SANVIKT" art rehabilitation Center, the children get opportunities for developing their creative abilities and communicating with healthy peers. "It is impossible to solve a problem of disabled children integration into everyday life without joint education and communication"- says Gulsara Rajapova, the Center Director. "It is a valuable opportunity for healthy children to learn to be tolerant, surmount deep-rooted prejudices and to look widely on life", -she added.
For many children staying with the Center is the opportunity for developing their creative abilities, increasing their capacities, acquiring necessary life skills and knowledge for the future realization of their potential.
The program's site, Sanvikt, is not in English. (Russian, maybe?) And the images of the art and people in the program are lovely, but not still images, so I do not know how to put an example here or even describe for the visually impaired, except to say there are dozens of images showing rooms filled from wall to ceiling with art, images of children working on art, and a big mural being painted by many. Anyone with suggestions of how to capture an image or two to put here, please enlighten me.
A follow-up to last week's post about "My fat (but actually very normal-sized) legs" to illustrate that I speak the truth: My legs are no longer skinny, but are also totally not fat, no matter how much the change in them surprises me or how much the media representation of "normal-sized" warps my brain even after years of being unhealthily underweight and wishing I was not.
Both of these photos were taken this past week, though frankly, the first one is just to show off my socks. Both are color pictures of me from mid-thigh down sitting in my white scooter. Vent tubing can be glimpsed here and there, as well as "The Tooth" (see endnote here) near my right knee in the second photo.
In the first I am wearing white print pajama pants pulled up to my knees to show long over-the-knee stripey cashmere socks in shades of green, brown, orange and light blue. Snazzy blue tennis shoes.
In the second photo I am wearing brown pants pulled up to my knees to reveal my sturdy looking pegs. Crew socks in a space-dyed purple-brown-dark green (psst! Elizabeth: Smartwool!), my hairy legs, and those same tennis shoes.
Here is a side-by-side comparison of my legs in '92 and today. Reminder: I am 5'11" and currently weigh about 125 pounds. That puts my BMI at 17.4, thoroughly in the "underweight" category even now.
On a different topic, an interesting Google search led here today:
"what would I look like with no skeleton?" (This blog is, inexplicably, the fifth best hit for that info.)
Image description: Screw Bronze's Elizabeth McClung sits in her manual wheelchair in a park feeding a squirrel. Hand held down by the back rim of her right rear wheel, a brown squirrel stretches up to reach the food she holds. The squirrel's front paws are holding onto the wheel rim. I believe his name is Twitchy, which is coincidentally also the name of all the woodland squirrels I know.
Flickr photo by mike fischer of a fantastically beautiful mural in San Franscisco. (I think Brown- femipower had this image in an entry about a year ago.) Two Latino women clasp hands above their heads and dance. A young woman with flowing dark hair sits in a manual wheelchair grinning at her able-bodied dance partner, an older woman with her hair in a bun. The older woman wears a sunny yellow top and blue print skirt. The younger woman wears turquoise pants and a lavender sleeveless top with the words "Earn Your Attitude, ACT UP" on it. The front wheels of her chair are not touched the ground, which is a field of grass and flowers.
Flickr photo by dabdiputs of a mural in the cafeteria of the Department of Agriculture in Washington, D.C. Against an abstract multi-colored squiggle background the giant blue figure of the international wheelchair access symbol dude sits with a big grin and some sort of green helmet. I think the helmet is for Extreme Moshing, because he is surrounded by the multi-colored words "Rock 'n Roll Wheelchair."
Flickr photo by nicholsphotos of the Working Classroom Mural at about 3rd and Gold Streets in Albuquerque, New Mexico. It's part of the Albuquerque Murals Project. Detail of a larger image, apparently, this part is of a classroom of young students. A black woman in a bright turquoise dress stands before them holding up a copy of the Free Press newspaper while students of various races and ethnicities sit before her. The student on the far left, hand raised in the air, sits in a manual wheelchair.
A huge, very realistic image of a Latino or black man sitting in a power wheelchair. The dude is about ten stories tall and looks so real. Could an actual photograph be transferred onto a space that big? He's in a modern black power chair and wears a gray hooded sweatshirt under a khaki jacket. Baggy blue jeans and white sneakers. Flickr photo taken in Philly by robotkasten.
On a large wall with big white tiles of smooth brickwork, black silhouetted figures in profile travel toward each other. Coming from the left, a woman with her hair in a ponytail pushing a child in a stroller. Approaching from the left, an elderly man pushing a person in a manual wheelchair, with the leg rests of the chair sticking out in front. Flickr photo by LarimdaME. If the photo tags can be trusted, this mural can be found in the subway station at Prince Street, uptown in New York City.
Flickr photo by gregkendallball of a mural in an Edgefield hotel in Oregon. Three bald people in white sleeveless gowns sit in manual wheelchairs. They have small wings attached to their backs, so perhaps they're supposed to be angels? (I don't like that part.) On a cream colored wall with a bold blue river of water the people seem to be following. Yellow stars follow their path.
Liz Henry who blogs at Badgermama captions this Flickr photo from a Portland hotel: "i hate this hotel with its no elevators to the third floor and its 1-story high ramp in the back and how there are no lifts anywhere. and how smug everyone is. and how there is no bathroom in my room and no bathtub anywhere. But I especially hate its endless giant murals of smiling people in wheelchairs. What the fuck?" This mural of smiling people in wheelchairs is located in a stairwell, as you can see from the photo taken half a flight up, the closest someone portrayed in the mural might ever be able to get to the art. Ironic, no? I can't see the mural clearly enough to describe much detail, but there's a pool table and at least two people in wheelchairs, with a woman lounging sexily in the lap of one of the wheelchair users.
Posted at Flickr in September, 2006, by mexicosolidarity, who leaves this caption: "An incredible banner that has been created in the Zocalo for many weeks. It depicts the struggle. The people carry signs calling for death to capitalism and for APPO. Governor Ulises can be seen in the wheelchair along with many other members of his repressive government." The mural is long and horizontal, in shades of red, white and black. Soldiers with guns face a crowd carrying weapons and banners that read, in Spanish, "Death to Capitalism" and"Fire [Governor] Ulises!"
R. Hennessy's Flickr photo, captioned: "Sure, it's a mural of a scenic day at All-American City Rutland, Vermont. Guys playing guitars, kids on roller skates, old people looking at things, and guys in wheelchairs. But take a closer look. Why does everyone have on the same pair of sunglasses? What is it about Rutland, Vermont that makes everyone want to be an aviator? Or does the artist simply not know how to paint eyes?" An idyllic city park scene, the person in the right foreground is an older white man sitting in a manual chair he pushes himself. Yes, he has the aviator sunglasses too.
Nuevo Anden's Flickr photo of a wall mural in Brookline, Massachusetts. While the dramatic Mexican mural conveys action and the Vermont mural is very realistically painted, this close-up of a white-bearded white man in a manual wheelchair is blurry and expressionistic. The man is looking toward us, leaning to the right over his right wheel. There's a small brown dog playing by his feet and the man has a stick in his hand. There are trees, leaves and grass all around.
Zesmerelda's Flickr photo of a Philadelphia wall grafitti of a bold, white spray-painted manual wheelchair and a box with the word "wheelchairs" and an arrow pointing to the drawing.
Edith OSB's Flickr photo of detail of a mural at the Sierra Vista Elementary School. I don't know what city. It's a colorful painting of an Indian woman or girl in a manual wheelchair wearing a pink and green sari and traditional Indian jewelry. The spokes of the wheelchair have "virtues" written along them, including: "Commitment, Detachment, Diligence, Excellence, Flexibility, Gentleness, Humility, Idealism, Integrity, Justice, Modesty, Patience, Responsibility, Reliability, and Self Discipline." There's another woman standing just behind the chair with a peace flag with a white dove on it. This is the entire mural.
