Amputee soldiers return to active duty

The Quaker Agitator notes the changing military policy on injured soldiers. From the Yahoo story:

Previously, a soldier who lost a limb almost automatically received a quick discharge, a disability check and an appointment with the Veterans Administration.

But since the start of the Iraq war, the military has begun holding on to amputees, treating them in rehab programs like the one here at Fort Sam Houston and promising to help them return to active duty if that is what they want.

"The mindset of our Army has changed, to the extent that we realize the importance of all our soldiers and what they can contribute to our Army. Someone who loses a limb is still a very valuable asset," said Lt. Col. Kevin Arata, a spokesman for the Army's Human Resources Command at the Pentagon.

Also, just as advances in battlefield medicine have boosted survival rates among the wounded, better prosthetics and treatment regimens have improved amputees' ability to regain mobility.

So far, the Army has treated nearly 600 service members who have come back from Iraq or Afghanistan without an arm, leg, hand or foot. Thirty-one have gone back to active duty, and no one who asked to remain in the service has been discharged, Arata said.

Most of those who return to active duty are assigned to instructor or desk jobs away from combat. Only a few — the Army doesn't keep track of exactly how many — have returned to the war zone, and only at their insistence, Arata said.

Yeah, I hate the Iraq war and Bush is a liar I want impeached. But I don't automatically see this as bad. It's problematic for oh so many reasons, but continuing to employ people who might otherwise join the ranks of the unemployed disabled seems better to me than simply discharging them and leaving them to fend for themselves.

What do you think?

Link courtesy of reader Jo.

Movie review: Tiptoes

Imagine the movie North Country cast with Brad Pitt playing Charlize Theron's role of the woman suffering sexual harassment at work. Not as a man suffering that harassment. Imagine Pitt cast in the part as a woman, without irony or satire.

Or imagine Spike Lee's Do The Right Thing, about an urban cauldron of racial tension, but unironically cast entirely with white actors in the main roles. You know, because the actors are talented and it would be an exciting challenge to portray someone of another race convincingly when the audience is aware of exactly who they, as actors, are. Some of the white cast would need to wear blackface, but it's part of the craft of acting. Right?

Those movies had impressive scripts. But now imagine a film about an engaged couple where the woman gets pregnant but the man hasn't yet told her that dwarfism runs in his family. His twin brother is a dwarf, played in all seriousness by a well-known 5'10" actor.

Yep, the couple (Carol and Steven), an artist and firefighter, are played by Kate Beckinsale and Matthew McConaughey. That's them in the center of the photo for one DVD cover, at left. Gary Oldman, a great actor but 5'10", plays McConaughey's dwarf twin brother Rolfe (Oldman is also 12 years older than McConaughey), always filmed in lumpy clothing to hide the fact he's walking on his knees. He's in the picture at far right. Pictured at far left is Patricia Arquette, who plays Lucy the average-sized lover of Rolfe's weird, bitter French Marxist dwarf friend, Maurice. Maurice is played by Peter Dinklage, an actual little person and fantastic actor.* He doesn't appear anywhere in the photo, or the billing in that DVD cover photo.

Got that? Tiptoes, a movie about dwarfism with all average-size actors playing any character with billing. The secondary characters and extras include dozens of little folks, so it was a very conscious casting choice to not let dwarfs represent themselves in any major substantive character-developed way. And while it's good to see a film about dwarfism, exploring the unique difficulties and cultural events that bring little people together, they remain -- if you'll forgive me -- the sideshow to the average-sized people who spend the film talking about them or, in Oldman's case, acting as one of them.

False representation, however earnest or talented the actor, is still a form of silencing and control. Why shouldn't this be any less outrageous and offensive than blackface? Why is this accepted but we never see a male actor given a woman character for a role?

"Nothing about us without us." It's a disability rights political slogan for important reasons: too often someone else insists on controlling the story to ridiculous degrees.

Oh: I did enjoy little bits of the film. Dinklage was fun to see, and I do like all the actors in the cast. The script was uneven and boring toward the end. Tiptoes premiered at the 2004 Sundance Film Festival, but damned if I know why.


* Peter Dinklage played the lead in the film The Station Agent, which I reviewed here. He's also My Imaginary Boyfriend, so I may be slightly biased when I say he's the best thing in Tiptoes.

Regarding Kevorkian

Not Dead Yet is demanding that the Associated Press retract and correct a faulty poll that asked the public misleading questions about the parole of convicted murderer Jack Kevorkian. From the press release:

According to the AP, the survey asked the following question:

"Do you think that Michigan doctor Jack Kevorkian should have been jailed for assisting terminally ill people end their own life, or not?"

"This question misinforms the respondent about the nature of the crime Kevorkian was convicted of and also mischaracterizes the health status of the majority of people who died at his hands. As anyone who watched the 60-Minutes telecast knows, Kevorkian directly injected lethal chemicals into Thomas Youk. This is not 'assistance'," says Stephen Drake, Not Dead Yet's research analyst. "Further, the word 'people' is paired with 'terminally ill', indicating that the majority of his body count consisted of people who were close to death." Beginning with the Detroit Free Press series 'The Suicide Machine' in 1997, there is overwhelming documentation that the majority of people who went to Kevorkian had non-lethal chronic conditions and disabilities.

Diane Coleman, president of Not Dead Yet, personally contacted Trevor Thompson, the AP's Manager of News Surveys, to demand a retraction and correction.

"Mr. Thompson eventually agreed the question didn't jive with the facts of Kevorkian's career or conviction but rejected any corrective action after consulting with the D.C. Bureau Chief, Sandy Johnson. Johnson claimed that the story about the poll was accurate, disregarding responsibility for contaminating the poll with a misleading question."

Carol Gill, Ph.D., agrees with the concerns of Not Dead Yet. "All good survey designers know that misleading questions produce invalid results. When participants are asked to respond to inaccurate and confusing items, the result is spoiled data. Unfortunately, this poll contained flawed questions. It's impossible to base sound conclusions on these results." Professor Gill is a research psychologist and associate professor at the University of Illinois at Chicago.

Drake adds that the refusal of Thompson and Johnson to address the misinformation in the poll is a violation of the AP's public "Statement on Values and Principles," which calls for swift and comprehensive corrective action when it publishes erroneous information.

"This is worse than the usual error," says Drake. "In this case, it created news in the form of a survey and then reported on that fabrication. Instead of simply reporting misinformation, AP has created the information in a way that superficially resembles scientific sampling. It has knowingly polluted the public discussion about an important public policy topic - and the organization is refusing to take responsibility for it."

Chicago columnist Mike Miner on the issue.

And a recent article from the Detroit Free Press stating that pro-assisted suicide activists are desperately trying to distance themselves from Kevorkian and his legacy:

As Jack Kevorkian, 79, prepares to re-enter the national spotlight this week after eight years in prison, assisted-suicide advocates are doing all they can to distance themselves from the man called Dr. Death.

His release from a Michigan prison Friday -- one week before a planned California vote on whether to join Oregon as the only states to allow assisted death for the terminally ill -- could not come at a more critical or inopportune time for the movement, which has worked for years to legalize the practice and shed the ghoulish persona many associate with Kevorkian and his suicide machine.

The article notes that in Oregon, where assisted suicide is legal, "Suicides under the law peaked in 2006, with 45 patients choosing to end their lives early."

That's inaccurate. There are no 2007 stats yet, so there's no "peaking." If 2006 has the highest stats, then possibly it's an upwards trend.

Here's a link to the Free Press coverage of Kevorkian over the years. Steven Drake says in comments at the Miner link above:

I've lost count of the number of Michigan journalists who admit there have been problems with accuracy in covering Kevorkian but don't seem particularly troubled by it.

Also, to my knowledge, the disavowal of Kevorkian by other assisted-suicide proponents is only vocal now, after he's been convicted, paroled, and will again have a public microphone. If someone can show me where these people have been speaking stridently against Kevorkian and his methods prior to now, when it's politically expedient to do so, I'd be interested in seeing that.

Race as disability

Back in March the story of the Andrews family of Long Island came to public attention. The NY Daily News announced "What a mess, baby: Parents say fertility clinic botched in-vitro & girl's got the wrong dad":

A Long Island woman and her husband are suing a Park Ave. fertility clinic for allegedly inseminating her with the wrong man's sperm.

After struggling to conceive their second child, Nancy Andrews and her husband, Thomas, turned to New York Medical Services for Reproductive Medicine for in-vitro fertilization treatments, according to a lawsuit.

Andrews soon became pregnant and the couple was overjoyed. They only discovered the clinic's "colossal blunder" after Andrews gave birth to her daughter Jessica, court papers charge.

"While we love Baby Jessica as our own, we are reminded of this terrible mistake each and every time we look at her," the Commack couple said in documents filed in Manhattan Supreme Court. "It is simply impossible to ignore."

Thomas Andrews is white and his wife is Dominican. But Jessica, who was born Oct. 19, 2004, has darker skin than either of them as well as "characteristics more typical of African or African-American descent," the lawsuit states.

The couple tested their daughter's DNA using a home kit and later with two more sophisticated methods. All three of the tests confirmed their suspicions - the tot has a different father.

The story came to public notice in March because a judge ruled the couple can precede with their medical malpractice lawsuit but disallowed the claims of mental suffering -- the parents' suffering and baby Jessica's suffering for being a different race than her parents. There's a lot to unpack here and The Nation's Patricia Williams took a stab at it:

What's distinctive about the Andrews case is that the parents... tried to cite... Jessica's pain and suffering for having to endure life as a black person. The Andrewses expressed concern that Jessica "may be subjected to physical and emotional illness as a result of not being the same race as her parents and siblings." They are "distressed" that she is "not even the same race, nationality, color...as they are." They describe Jessica's conception as a "mishap" so "unimaginable" that they have not told many of their relatives. (Telling the tabloids all about it must have come easier.) "We fear that our daughter will be the object of scorn and ridicule by other children," the couple said, because Jessica has "characteristics more typical of African or African-American descent." So "while we love Baby Jessica as our own, we are reminded of this terrible mistake each and every time we look at her...each and every time we appear in public."

Since the claim of mental distress of their child hinges on appearance and public perceptions of skin color, Williams comments on the family's photo:

The picture underscores the embedded cultural oddities of this case, the invisibly shifting boundaries of how we see race, extend intimacy, name "difference." According to the Post, Mrs. Andrews is "Hispanic" and apparently, by the paper's calculations, one Hispanic woman plus one white man equals "a white pair." The mother is "a light-skinned native of the Dominican Republic," seeming to indicate that while she may not be "white," she's also not "black." Each narrative implies that if the correct sperm had been used, the Andrewses would have been guaranteed a lighter-skinned child. But as most Dominicans trace their heritage to some mixture of African slaves, indigenous islanders and European settlers, and as dark skin color is a dominant trait, it could be that the true sperm donor is as "white" as Mr. Andrews. But that possibility is exiled from the word boxes that contain this child. Not only is Jessica viewed as being of a race apart from either of her parents; she is even designated a different nationality--this latter most startling for its blood-line configuration of citizenship itself.

Paul Butler at BlackProf discusses the race issue as well.

If I understand the legal situation correctly, the parents' claim of mental suffering is essentially a "wrongful conception" or "wrongful birth" claim and their suit on behalf of Baby Jessica's mental suffering is a "wrongful life" claim. New York state, where the case resides, has precedence in these situations, which Manhattan Supreme Court Justice Sheila Abdus-Salaam cited in her ruling. Regarding the "wrongful birth" claim:

By logical extension of the principles enunciated by the courts in New York that the birth of an unwanted but otherwise healthy and normal child does not constitute an injury to the child's parents, and that even parents of a child with a serious disease cannot recover for emotional injury for the birth of that child, plaintiffs in this case cannot recover for mental distress arising from having a child who is not Mr. Andrews' biological offspring.... Plaintiffs cannot recover damages based upon their claim that they were deprived of the opportunity to have a child of their own genetic makeup. The Court of Appeals has rejected as too speculative a claim that is " . . . based essentially on "wrongful nonbirth", the deprivation of an opportunity by a woman to have a child by her husband.

While these types of lawsuits were originally an additional claim for malpractice issues like failed vasectomies or lack of medical information provided by doctors, much of the case law centers around the distinction of whether or not a child with disabilities is involved. And, of course, that determination hinges on the ability to diagnose that there's "something wrong" with a child at the time a suit is filed. In the Andrewses case, if Jessica had not been perceived as looking physically different from her parents, her genetic differences (in this case, the fact that her father was not a biological parent) may have gone forever unnoticed.

And because the wrongful life suit (rejected by the judge) on Jessica's behalf claims she will suffer physical and emotional stress from having darker skin than her family, race is made here to be a kind of disability. Disability, after all, is not only about actual impairments, but also perceived impairments -- the ADA recognizes this fact of the social stigma of disability.

While the specific circumstances (of botched reproductive technology leading to wrongful birth and life claims due to skin color) may be new, positing race or gender or ethnicity as a disability is not historically new. Disability is and has frequently been used as a method of demonizing or oppressing other minority populations. That goes back at least as far as Aristotle claiming that women are mutilated (read impaired) males. The medical definition of "hysteria" linked femaleness with mental instability. Irrespective of diagnosed intellectual impairments, black male schoolchildren in U.S. public schools are much more likely than other kids to be placed in special ed classes or considered behavioral problems. There are innumerable examples of oppressed minority identities having their identifying biological difference labelled as a disabling condition.

But culturally, we find it challenging to look at the dynamic from the other direction. Sandel's book (discussed briefly in an earlier, May 26, 2007, post) on the ethics of striving for genetic perfection asks:

Is it wrong to make a child deaf by design? If so, what makes it wrong -- the deafness or the design? Suppose, for the sake of argument, that deafness is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time, in their choice of mate and, these days, in their use of new reproductive technologies?

What if, with an understanding of how elusive and intersecting categories of ability and identity are, that paragraph were rewritten to more closely discuss the Andrewses court case?

Is it wrong to make a child dark-skinned by design? If so, what makes it wrong -- the dark skin or the design? Suppose, for the sake of argument, that dark skin is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time, in their choice of mate and, these days, in their use of new reproductive technologies?

Intersections between identities are never perfect, and matching women's oppression to racial oppression to disability oppression is never a perfect fit of history and experience, but the Andrewses case does beg the above questions about race. The references to "dark skin" could easily be changed to "light skin" to reflect the family's presumption of genetic whiteness, but the "problem" of skin color difference remains.

I confess that I don't know exactly how this court case illuminates the debates over prenatal screening and genetic engineering to avoid children with disabilities. But they are fundamentally related.


Cross-posted at Echidne of the Snakes

Update: Also posted at Racialicious

Mini-slumgullion # 38 -- Announcement-y stuff

Via Penny:

Cindy Sue at Six Almost Seven announces plans to celebrate the eighth anniversary of the Olmstead decision at the Georgia State Capitol. The 1999 Supreme Court decision in Olmstead v. L.C and E.W ruled that Georgia must work toward placing institutionalized disabled citizens in community settings rather than simply warehousing them. It's one of the few certain judicial victories resulting from the ADA and it's had huge, far-reaching implications for disabled people's lives and for public policy. The anniversary is June 22. What are you planning?

Via Connie at Planet of the Blind:

[With]TV -- A new television channel "of, by, and for people with disabilities... and everyone else." Details at POTB, and also at the [with]TV website.

Via Editor David Bolt:

The Journal of Literary Disability's first issue is now available online. (!) Seriously -- ! Stephen Kuusisto co-wrote one of the articles, and they all look interesting and exciting. Once I get a chance to read I'll no doubt be commenting on what's there.

The Case against Perfection

A new book by Michael J. Sandel, called The Case against Perfection: Ethics in the Age of Genetic Engineering, explores the moral issues created by the increasing knowledge about genetics and the scientific abilities to manipulate our future because of it. I haven't read the book yet, though I do plan to. But an excerpt from the opening pages (available here in .pdf format) offers some intriguing questions which are related to an upcoming post I'm working on.

Sandel begins by looking at a deaf lesbian couple who chose to have a deaf child and juxtaposes that rather radical decision with those couples who seek genetic perfection in their child:

Is it wrong to make a child deaf by design? If so, what makes it wrong -- the deafness or the design? Suppose, for the sake of argument, that deafness is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time, in their choice of mate and, these days, in their use of new reproductive technologies?

Not long before the controversy over the deaf child, an ad appeared in the Harvard Crimson and other Ivy League newspapers. An infertile couple was seeking an egg donor, but not just any egg donor. She had to be five feet, ten inches tall, athletic, without major family medical problems, and to have a combined SAT score of 1400 or above. In exchange for an egg from a donor meeting this description, the ad offered payment of $50,000.

Perhaps the parents who offered the hefty sum for a premium egg simply wanted a child who resembled them. Or perhaps they were hoping to trade up, trying for a child who would be taller or smarter than they. Whatever the case, their extraordinary offer did not prompt the public outcry that met the parents who wanted a deaf child. No one objected that height, intelligence, and ahletic prowess are disabilities that children should be spared. And yet something about the ad leaves a lingering moral qualm. Even if no harm is involved, isn't there something troubling about parents ordering up a child with certain genetic traits?

Some defend the attempt to conceive a deaf child, or one who will have high SAT scores, as similar to natural procreation in one crucial respect: whatever these parents did to increase the odds, they were not guaranteed the outcome they sought. Both attempts were still subject to the vagaries of the genetic lottery. This defense raises an intriguing question. Why does some element of unpredictability seem to make a moral difference? Suppose biotechnology could remove the uncertainty and allow us to design the genetic traits of our children?

The technology of genetic engineering is one cultural location where the politics of reproductive freedom and disability rights come together. These are not the only issues, or the only place these two interests intersect, but it is probably the most culturally compelling in our time.


Cross-posted at Echidne of the Snakes

Things that crack me up, #28

Photo description: A picture of a woman in a wheelchair taken from several feet behind her. A woman with long flowing almost white-blonde hair and a leopard print cushion behind her back sits in a motorized wheelchair. You can't see her face or body, but there's a bumpersticker on the back of the power unit that reads "Does this wheelchair make my butt look big?"

Courtesy of the Finnish blog Tassutuksia

Check out Disability Blog Carnival #15

The latest edition of the twice-monthly Disability Blog Carnival is up at Ryn Tales, where "Family" is the theme. Under that theme, host Kathryn gathers posts on the following topics: Loss of Anonymity, Don’t speak for me, What it’s like, Demystifying and Diversifying the Meaning of Perfection, Get a Clue! Tips for Family and Friends, Impact of Prejudice, A Day in the life: Parenting, and Hope for Ellie's Future.

The next carnival is at PilgrimGirl where the theme is "Borders": submission deadline is Monday, June 11, 2007, and further info is here.

Cross-posted at Echidne of the Snakes

Movie review: Emmanuel's Gift

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

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

So I had reservations aplenty.

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

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

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

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

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

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

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

“The society and country are not set up to take care of handicapped people. Emmanuel has tenacity, endurance and he has a strong heart to do the things that he is doing and to use what he has done as an example for other disabled people. We will support him and tell the government that they are also part of us—they may be physically challenged, but mentally and intellectually they are the same as us.”

The King's statements are nothing short of revolutionary in a culture where disability is commonly believed to be the karmic result of immorality.

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

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

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

Cross-posted at Echidne of the Snakes

Guest posting at Echidne's for a week

Tireless feminist blogger Echidne at Echidne of the Snakes has enlisted me and several other folks to keep her place busy while she takes a short break. I'll be cross-posting a few of my entries over there between now and next Wednesday, and since her readership is much, much larger than mine you might pop over and read any comments there. Join in discussion. Enjoy the change of scenery.

Admin notes

Welcome to the hundreds of visitors following the AOL links here through the news story of Emilio Gonzales. There's not really much original content from me specifically regarding that story, but feel free to browse these related categories: Ashley Treatment, children, choice, health care, and Medicare. My indexing doesn't cover most of my older posts yet, but the past six months or so are included.

Feel free to comment, though I have disallowed anonymous comments. Also, since I'm away from the computer for most of the next day, I've enabled comment moderation. That will delay appearance of comments until at least Tuesday evening.

Finally, I've added a few links to my sidebar under "More Gimp Parades":

Fate is Chance
L'Azile
Fey Stranger
Disabled Christianity
Screw Holland
The Adventues of Leelo and His Potty-Mouthed Mom
ADHD & Me
Life Sat Down

Enjoy.

Poetry Monday: Jhamak Kumari Ghimire

What is the Interpretation of the New Millenium?
by Jhamak Kumari Ghimire

A soft light glimmers
on the eve of people’s deaths
The fern unfurls out of season
without its stem
having matured

No mourning will be observed now
on the eves of people’s deaths
What is the interpretation of this age?
A separate live identity
thrives inside a scream

After a hollow ending
the raped
accused
abducted
orphaned skeletons
won’t exorcise their agitation
at the crossroads of expression
as one exorcises
witches and ghosts
by sacrificing chicks

The sari and blouse torn in
the poverty of a rag to wear
in the freezing winters
dam the snow rivers of the season
and yet there is no hint of bitterness
The yearned-for attacks
not just of one winter
but of thunder and lightning
spread no mutinous luminescence
A peaceful flame burns forever
at evening time in the homes of the dead
It is likely that
the cultured people who affect devotion
do not wish to offer to the fire
a single tear
for this millennium
Now, what is the interpretation of this age?
Each hurting moment
Each hurting tremor
kisses the arrival of the new millennium
without the slightest cry of pain

Not a stir of the new millennium came
to the frostbitten heels of the old grandmother
to the ragged tunic of the old grandfather
The water jugs filled by a young girl
near this courtyard of poverty
taunt the new millennium
the flowers she has plucked and arranged
unearth countless realities
and search in the grandmother’s torn sari and blouse
in the grandfather’s patched tunic
for the interpretation of the new millennium

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

Photo description: Ghimire is a Nepalese woman in her early twenties. It's a black-and-white photo showing her with a short haircut and her bare right foot resting atop her left knee. She reportedly types her work with her toes. She's wearing a printed button-down blouse and dark-colored pants. She's laughing, with such a large happy grin on her face, straight pretty teeth showing and eyes squinted shut with laughter.

Emilio Gonzales dies

Baby Emilio died on Saturday. From the AP story:

AUSTIN, Texas (AP) - A 19-month-old boy whose terminal illness started a contentious legal and ethical debate over who decides when life-sustaining treatment should cease has died.

Emilio Gonzales died in his mother's arms Saturday night at Children's Hospital of Austin, family attorney Jerri Ward said....

Emilio, who had been on a respirator since December, was believed to have Leigh's disease, a progressive illness which destroys brain functions. His mother had fought in court to continue his medical care while doctors, saying there was no hope of recovery, sought to remove him from the machines keeping him alive.

Doctors wanted to invoke a state law allowing the hospital to stop life support after a 10-day notice for patients deemed medically futile.

Emilio's mother, Catarina Gonzales, said she knew her son would die but wanted doctors to continue care, pointing out that he smiled and turned his head when he heard voices. Her lawyer argued the state law was unconstitutional. In April, a judge agreed to temporarily block the hospital's move to end life support....

The state Senate approved legislation this month to change the law and give patients' families more time before ending life-sustaining treatment.

via FRIDA:

We of FRIDA offer our sincere condolences to Emilio's family and are thankful that he was able to pass without being under denial of treatment. We hope that his mother finds comfort in thinking of the many disability rights allies, including many readers of this blog, who sought to aid in whatever ways they could.

We encourage you to leave your comments and thoughts on this website, or post on other websites, and most especially we encourage you to write your thoughts to your local papers to make sure that the nation thinks long and hard about why this family had to fight this fight with the State of Texas and the medical establishment.

Need something to read because you came here to see what's up, only to find that I am currently a slacker?

Go here and read Retired Waif's lovely rant. A tiny taste:

Yes, I have a terrible attitude. I catch reproachful looks all the time. After all, I’m supposed to be the saintly Buddhist theology major, the non-traditional student who’s just so happy to be here, the poor kid on scholarship, and a thousand other things that make the constant chip on my shoulder lately seem so out-of-place to school-people, not to mention that girl who just got married and with her whole life ahead of her got that horrible disease, and I swear to God if I do anything other than smile bravely people downright glare at me for not giving them their little feel-good “there but for the grace of God,” “isn’t she inspiring” moment.

There are a number of people who need to disabuse themselves of the notion that I exist to show them the dignity of the human spirit in the face of adversity.

Eleventh Circuit: Mental Retardation is Not a Disability Under the ADA

I stole the headline from Sam Bagenstos at Disability Law. He has the relevant excerpt from the unpublished Eleventh Circuit District Court decision which asserts that:

It is unclear whether thinking, communicating and social interaction are “major life activities” under the ADA.

Some Fred Small lyrics for Ruth

Talking Wheelchair Blues
by Fred Small

I went for a jog in the city air
I met a woman in a wheelchair
I said "I'm sorry to see you're handicapped."
She says "What makes you think a thing like that?"

And she looks at me real steady
And she says, "You want to drag?"

So she starts to roll and I start to run
And she beat the pants off my aching buns
You know going uphill I'd hit my stride
But coming down she'd sail on by!

When I finally caught up with her
She says "Not bad for somebody ablebodied.
You know, with adequate care and supervision
You could be taught simple tasks.
So how about something to eat?"

I said that'd suit me fine
"We're near a favorite place of mine."
So we mosied on over there
But the only way in was up a flight of stairs.

"Gee, I never noticed that," says I.
"No problem," the maitre d' replies.
"There's a service elevator around the back."

So we made it upstairs on the elevator
With the garbage, flies, and last week's potatoes
I said "I'd like a table for my friend and me."
He says "I'll try to find one out of the way."

Then he whispers, "Uh, is she gonna be sick,
I mean, pee on the floor or throw some kind of fit?"
I said "No, I don't think so,
I think she once had polio.

But that was twenty years ago.
You see, the fact of the matter is,
If the truth be told,
She can't walk.

So he points to a table, she wheels her chair
Some people look down and others stare
And a mother grabs her little girl
Says "Keep away, honey, that woman's ill."

We felt right welcome.

Then a fella walks up and starts to babble
About the devil and the holy bible
Says "Woman, though marked with flesh's sin,
Pray to Jesus, you'll walk again!"

Then the waiter says "What can I get for you?"
I said "I'll have your best imported brew."
And he says "What about her?"
I say "Who?" He says "Her."

"Oh, you mean my friend here."
He says "Yeah." I say "What about her?"
"Well, what does she want?"
"Well, why don't you ask her?"

Then he apologizes.
Says he never waited on a cripple before.
We immediately nominated him for Secretary of the Interior.

Well, she talked to the manager when we were through

She says "There're some things you could do
To make it easier for folks in wheelchairs."
He says "Oh, it's not necessary.

Handicapped never come here anyway."

Well, I said goodnight to my newfound friend
I said, "I'm beginning to understand
A little bit of how it feels
To roll through life on a set of wheels."

She says "Don't feel sorry, don't feel sad,
I take the good along with the bad
I was arrested once at a protest demo
And the police had to let me go.

See, we were protesting the fact
That public buildings weren't wheelchair accessible.
Turned out the jail was the same way.
Anyway, I look at it this way--
In fifty years you'll be in worse shape than I am now.
See, we're all the same, this human race.
Some of us are called disabled. And the rest--
Well, the rest of you are just temporarily able-bodied."

-- posted for Ruth at A Different Light

Things that crack me up, #27

Sitemeter Google query o' the day:

"how do rodents adapt to dessert"? [sic]

How about it? Answers for inquiring minds?

As an aside: It is astonishing how many topics I post on fit extremely well into my catch-all category of "windmills and squirrels and etc."

Friday music: Random wheelchair reference

The Ramones: "I Wanna Be Sedated"



Lyrics:

Twenty-twenty-twenty four hours to go I wanna be sedated
Nothin' to do no where to go-o-oh I wanna be sedated
Just get me to the airport put me on a plane
Hurry hurry hurry before I go insane
I can't control my fingers I can't control my brain
Oh no oh oh oh oh

Twenty-twenty-twenty four hours to go I wanna be sedated
Nothin' to do no where to go-o-oh I wanna be sedated
Just put me in a wheelchair get me on a plane
Hurry hurry hurry before I go insane
I can't control my fingers I can't control my brain
oh oh oh oh

Twenty-twenty-twenty four hours to go I wanna be sedated
Nothin' to do no where to go-o-oh I wanna be sedated
Just put me in a wheelchair get me to the show
Hurry hurry hurry before I go loco
I can't control my fingers I can't control my toes
Oh no oh oh oh oh

Twenty-twenty-twenty four hours to go I wanna be sedated
Nothin' to do no where to go-o-oh I wanna be sedated
Just put me in a wheelchair get me to the show
Hurry hurry hurry before I go loco
I can't control my fingers I can't control my toes
Oh no oh oh oh oh

Ba-ba-bam-ba ba-ba-ba-bam-ba I wanna be sedated
Ba-ba-bam-ba ba-ba-ba-bam-ba I wanna be sedated
Ba-ba-bam-ba ba-ba-ba-bam-ba I wanna be sedated
Ba-ba-bam-ba ba-ba-ba-bam-ba I wanna be sedated

***

Disability Blog Carnival #14 -- Firsts

Welcome to the 14th Disability Blog Carnival! There's been much blogworld sharing of posts about disability recently because of the second annual Blogging Against Disablism Day on May 1. This will be a nice carnival here, but really, everyone (us small-time bloggers, that is) pulled out the stops for that event, which was beautifully organized by Goldfish. I'm still reading a few of the BADD posts each day and reveling in the wealth and diversity of experiences that nevertheless reveal our common humanity.

The theme for this carnival is "Firsts." I chose that as a theme because I've been dwelling lately on how nondisabled folks relate to those of us who identify as or are visibly disabled and how little we're talked about from their perspective. It made me think of how first interactions can shape us and our beliefs, how our first connections between personal experiences and those of someone else can be so enlightening and encouraging in understanding the world. (Studying racism and the civil rights movement before disability theory and the social model were available kept me sane and connected to the world as a teenager.) First accomplishments can be problematic for disabled people as a group if the lone achiever is touted as a supercrip and made to represent the stifling stereotypes of "saintly" or "courageous," but they can also open minds. And doors.

Angelo Suriano was the first paraplegic musher to compete in and finish the Iditarod. Photo description: On a snow-covered road, a man in a grey winter coat and black hat is pulled on a dogsled by seven huskies. Though Suriano is standing in the photo, he reportedly has a small seat for when he gets fatigued.

Firsts

Glenda Watson Hyatt writes on how transformative new experiences can be in Firsts Expand Our Comfort Zones So Dreams Are Reachable posted at Do It Myself Blog.

Wheelchair Dancer examines the many ways she has broken new ground personally, in her family and her community as a "woman of disability and colour" in First posted at Wheelchair Dancer.

Andrea recollects when, at age nine, her abilities weren't being recognized in school and she first tried to advocate for herself in First Foray at Andrea's Buzzing About.

Photo description: A close-up of a bronze plaque reads "In commemoration of the first public curb ramp and in recognition of those who have fought for equal access in every community. 25 years of working together, 1972-1997, City of Berkeley and Center for Independent Living." Flickr credit: marymactavish

Emma ponders what it means when the little old lady who stereotypically needs help crossing the street offers it to the gimp in A new low posted at The Life and Times of Emma.

Kestrell has news of the world's first universally inaccessible game in Game Over!: the world's most (intentionally) inaccessible game posted at Ex Libris. Yep, that's universally inaccessible.

And Kestrell also announces the upcoming first issue of a new journal in disability studies, the first issue available online for free (!) in Journal of Literary Disability to go online in late May posted at Ex Libris.

Last year, Canadian teenager Jenna Lambert became the first disabled swimmer to swim across Lake Ontario. Photo by Lynn Rees Lambert. Photo description: A white teenager with red hair swept up in a ponytail smiles, posing with hands resting on a white fence. She's wearing a red one-piece swimsuit and there's an indoor pool behind her with several swimmers doing laps.

Romeo Vitelli writes about the T4 eugenics program, which was a first step in the Nazi's Final Solution, in T4 posted at Providentia.

Penny Richards presents details of the first documented developmentally disabled people (siblings) in the American Colonies in Mara and Benoni Buck of Jamestown, Virginia posted at Disability Studies, Temple U..

Also, Penny Richards looks into the origin of the term "TAB" -- "temporarily able-bodied" -- in In Search of....the first TAB posted at Disability Studies, Temple U..

Dr. Annalu Waller, a computer scientist and expert in augmentative and alternative communication, is also Scotland's first disabled woman Episcopalian priest. She was ordained in 2004. Photo description: A head-and-shoulders pic of Waller, a white woman with short dark hair, sitting in an empty auditorium somewhere in Brussels. She's wearing a navy suit jacket with a blue-printed blouse underneath, and there's a nametag badge attached to the suit jacket.






David Gayes shares the childhood memory of his first realization that cerebral palsy would limit his physical abilities in First Loss over at Growing up with a Disability.

Ettina questions what happens after the first person of an identity group achieves something, and how to increase equality if that achievement is used as a token success in After the First One posted at Abnormaldiversity.

Karen writes about a Deaf travel agency marketing the first cruise where the entire ship, carrying over 4,000 travelers, will be devoted to deaf and hard of hearing vacationers in Deaf Freedom Cruise 2007 posted at A Deaf Mom Shares Her World.

Ruth Harrigan posts about how each encounter with strangers can be a unique, first experience in Close encounters of the first kind posted at WHEELIE CATHOLIC.


Politics, Social Observations & Rants

Autistic Bitch from Hell discusses Hillary Clinton's alliance with the troublesome organization Autism Speaks in Hillary Clinton's Final Solution posted at Whose Planet Is It Anyway?

Cindy Sue Causey looks at the ugly ableism of commentator Neal Boortz in his proposed solution to the quiet hybrid cars that endanger blind pedestriaans in Personal to Neal Boortz :: Meet your future, er, Don Imus.. posted at Six. Almost Seven...

Manxome offers a rant that asks "Why can't a patient have a copy of her medical records?" in Arrgh posted at Climacteric Clambake.

Astrophysicist Stephen Hawking recently rode in a zero-gravity plane -- a first for him. But Googling shows a woman was reportedly the first disabled person to travel in zero-g back in 2005. Photo description: Hawking, a white man with sandy-brown hair, wears a blue jumpsuit and floats horizontally inside a plane. In homage to Isaac Newton, an apple floats in mid-air nearby. Video of Hawking's flight.

Chris Bray discusses national health policy in the UK and a survey revealing the belief by many medical professionals that "lifestyle choices" should impact who pays in health services, state power, and social control (3) posted at historiblogography.

Joel Smith presents some thoughts on the value of work and the need for supportive environments in Importance of Work posted at NTs are Weird.

Fey Stranger notes the absence of large print books for readers of science, history, philosophy and other deep subjects in yet another "separate but not equal" moment: large print books posted at Fey and Strange.

Philip Dawdy presents an excellent round-up of posts on Cho Seung-Hui coverage in That Guy: A Cho Roundup posted at Furious Seasons.

Karl Dean says he is the first disabled person in Britain to get a college degree entirely with the use of a "head pointer" device to complete his work, including a 10,000 word dissertation on augmentive and alternative communication systems. Photo description: Dean is in the foreground wearing a head pointer strapped to his head, and his laptop sits on a table in the background.

IronJawedAngel shows a YouTube video example of "well-meaning ableism" in Hmmm.... posted at She Speaks. (Video description: Basically, this is ten minutes of a guy talking straight to the camera. There's some strange and awkward editing where he turns between two cameras, and he does include an inset of a disabled guy's video toward the beginning. The audio is clear and seriously cringeworthy, though given my own recent rant on nondisabled people not talking about their fears and prejudices of disabled folks, I appreciate parts of this and find it really worthy of discussion.)

Jeff McNair asks why he can't just be friends with residents of a grouphome -- he has to be fingerprinted, and a "certified volunteer," before any interaction in being certified as a volunteer posted at disabled Christianity.

Michael McGrath of Britain is the first disabled explorer to have visited both the North and South Poles. Photo description: While McGrath can and did walk for much of each trek, the photo shows him in a sunglasses and a bright blue parka with fur-trimmed hood sitting in a manual wheelchair next to the shiny ball on a red and white striped post that apparently signifies the south end of the planet. He was there in 2004 and the photo shows a British flag planted in the snow behind him. The surrounding landscape is flat with a hard perma-frost snow cover and the sky is blue with just a wisp of clouds.


The Personal

Lauredhel presents a "coming out" first post about her hidden disability. Or she presents a rant. This could have gone in either category above, but she also writes about the personal experience of coming to terms with a new lower level of energy in Stop and think: invisible access for invisible disabilities posted at Hoyden About Town.

Kim quotes Robert F. Kennedy, Aeschylus and Maurice Merleau-Ponty to answer a late night question in a bar in Reprise: What's it like to have one leg? posted at Larvatus Prodeo.

Leticia Velasquez writes about the tricks and difficulties of raising a restless disabled child, and her commitment to stand up to doctors who want to do just one more test in My Private Struggle posted at cause of our joy.

Tokah Fang ruminates on a common humiliating experience of disability and the behavior of nondisabled folks in Oops? posted at From Where I'm Sitting.

And that concludes this edition. Thanks to everyone who participated, and thanks to Penny Richards for the creation and continued fostering of this project. Submit your blog article to the next edition at Ryn Tales, where the theme is "Disability & Family." Here's the carnival submission form. Deadline is usually the Monday before the Thursday carnival.

Technorati tags: disability blog carnival, blog carnival, disability.

Please sit by

Or stand by, if that's your thing. There are a couple dozen emails from readers that I'm not ignoring -- if they seem to be a topic of mutual interest to me and the sender, that is -- but have put on the back burner for a couple days. I'm putting together the next carnival, which should go up as scheduled tomorrow. And I'm trying to follow the recent discussions of the Ashley Treatment. There's a lively discussion on that in the post just below.

In other news, the weather is unbelievably beautiful today, and probably for the next few days. I intend to enjoy all the pre-mosquito outdoorsiness I can, and I expect that to impact the rhythm of posting here. All summer long, if I'm lucky. In the meantime, feel free to comment on old posts or keep the Ashley X discussion going. Or visit these fine folks:

As The Tumor Turns

Diary of a Goldfish

The Perorations of Lady Bracknell

PilgrimGirl

The 19th Floor

Wheelie Catholic

Hospital violated state law performing "Ashley Treatment"

I will do more than simply post the links on this soon, but the news for now from the Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW):

Many people with disabilities have expressed great concern over the use of invasive medical procedures used to keep a young child with disabilities small. As reported at great length, parents of a six-year old girl named Ashley asked doctors at Seattle Children’s Hospital to give Ashley high doses of hormones, and remove her breast buds and uterus.

Pursuant to its PADD federal mandate, the Washington Protection and Advocacy System (WPAS) used its federally granted access authority to initiate an investigation into the use of the “Ashley Treatment.”

The investigation revealed that legal the rights of the child were violated when the hospital involved proceeded with the hysterctomy portion of the treatment without a court order first being obtained.

The hospital acknowledges its mistake and has agreed to implement many procedures to prevent similar legal violations from happening in the future.

Please read the WPAS Investigative Report Regarding the “Ashley Treatment” for more information about what happened to Ashley and how to prevent it from happening to other children with disabilities.

Update: Ashley X's parents respond to today's report:

Parents of Ashley X's Position on the Legal Findings on Hysterectomy

As the loving parents of Ashley X we support the vigilance of WPAS in their effort to protect the vulnerable members of our society.

In 2004 Ashley X was indeed given a hysterectomy without a court order. Prior to the surgery, we had consulted with a disability lawyer and learned that the state law, which is intended to protect the rights of the disabled to procreate, did not apply to Ashley's case since:

1- Given Ashley's developmental state and prognosis, which is well-documented by her doctors and was reported to the Ethics committee, voluntary procreation is not meaningful or applicable to her case and will never be.

2- Sterilization is not the intent of the Ashley Treatment but a byproduct of it

While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. . Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley's.

As responsible and loving parents, deeply concerned for the wellbeing of our child, we provided a better quality of life to our Ashley, who is doing very well under our love and care. We hope that other families of the many children like Ashley will likewise be able to care for and benefit their children without undue obstacles.

We appreciate your continued support, prayers, well wishes, and respect of our privacy.

Why the disabled do Taliban's deadly work

Globe and Mail article here.

Excerpt:

His disability didn't come as a surprise. As the insurgency in Afghanistan gathers urgency, the Taliban and other forces are recruiting marginalized and vulnerable groups to carry out suicide attacks while men from their own ranks keep up the ground offensive.

The pool of the disenchanted and hopeless is large in Afghanistan -- people left on the fringes by their economic, physical or mental circumstances -- and there are few services to rehabilitate them after three decades of war.

"Almost 90 per cent of [suicide bombers] are people with some form of disability," forensic expert Yusuf Yadgari said.

Every bomber's body in Kabul-based attacks passes through Dr. Yadgari's morgue. He has so far detected such disabilities as muscular dystrophy, amputated toes, blindness, skin diseases and signs of mental illness in the bodies of suicide bombers.

Although no statistics are available, anecdotal evidence increasingly backs up Dr. Yadgari's observations. Security experts argue that the Taliban seek out the disaffected, the poor and the marginalized, a group that certainly would include a majority of the disabled. And non-governmental organizations say reports of disabled people being trained as suicide bombers, although unproven, are common.

"One reason why people entertain the idea is there is complete loss of hope in being able to live a normal life," said Firoz Ali Alizada, who lost his legs to a land mine and now uses artificial legs and crutches.

"In a culture like ours, disability and the possibility of being out on the street are equated with great shame. A man who is married and has children is suddenly incapable of supporting and feeding his family. ... He might find it easier to die."

Ron Kovic on war

This is a video of activist Ron Kovic by MoveOn.Org speaking about war, the disability it causes and the cost to Americans. Thanks to Trinity for the link.



Description: Visually, it is a close-up of Kovic speaking. He's a genial-looking, balding white man with a trim white beard and mustache, wearing wire-rimmed glasses. He's wearing a button-down white dress shirt, unbuttoned at the collar, and a black vest. Preceding his speaking is a black screen with the words "Video Vets interview with Ron Kovic" and then a cover of his autobiographical book Born on the Fourth of July. And following his speech is another black screen and the web address MoveOn.org

Audio: "My name is Ron Kovic. And I joined the United States Marine Corps out of high school in 1964 inspired by President Kennedy's "Ask not what your country can do for you, but ask what you can do for your country." I asked what I could do for my country. I volunteered for two tours of duty in Vietnam. I was ready to- I was willing to risk my life and I was willing to die for my country. I so- I trusted- I trusted my leaders, I trusted this government. And all of that was shattered after Vietnam.

"On January 20th, 1968, while leading my scout team across an open area. Leading an attack on a village, I was shot in the right foot, the first bullet went through my foot and blew out the back of my heel. The second bullet- I continued to return fire in a prone position. The second bullet hit my right shoulder, went through my lung and severed my spine from my mid-chest down. I became paralyzed for the rest of my life. Vietnam changed my life and that wound changed me forever.

"I'd seen the cost of war, the human cost of war at the intensive care ward in Danang. I'd seen it at the Bronx VA. I'd lived amongst the rats and the overcrowded conditions. Patients pushing call buttons, aides never coming to their- men lying in their own excretement. And a government- a government that could pay for the most- the most technologically-advanced weaponry, the most lethal weapons you could imagine. Millions of dollars, billions of dollars, and yet could not care for their own wounded when they came home.

"Over the last month and a half, I found myself amongst the wounded once again at the Long Beach Veterans Hospital. I was told that there were two young men in the room next to mine. They were in their early twenties. They were Iraq veterans who'd just been paralyzed in the Iraq war. And it just touched me very deeply.

"I spent that month and a half in the Bronx VA. I met some of the most wonderful people, very dedicated people, very caring human beings. But there were the same overcrowded conditions. There was- there was the equipment that broke down, the equipment that did not work, the need for more funding, the need for more caregivers, more aides. And there were patients who continued to have to wait for assistance, same as the Bronx in 1968. There was a shortage of nurses.

"How can you send young men like myself and those of this generation to Vietnam and to Iraq? How can you send them and spend billions of dollars on a war that is lost, a war that cannot be won? A senseless war. A wasteful war. How can you do that? How can you put their lives at risk? How can you put them through that emotional trauma and not care for them when they come home? This is- this is unacceptable. I love this country. I was willing to risk my life. I gave three-quarters of my body to this country in Vietnam. And I'm watching this same thing happen all over again.

"What is it gonna take? How many more have to die? How many more have to come home wounded and maimed like myself?"

Poetry Monday: Mark Doty

An excerpt from "Atlantis" by Mark Doty:

4. ATLANTIS

I thought your illness a kind of solvent
dissolving the future a little at a time;

I didn’t understand what’s to come
was always just a glimmer

up ahead, veiled like the marsh
gone under its tidal sheet

of mildly rippling aluminum.
What these salt distances were

is also where they’re going:
from blankly silvered span

toward specificity: the curve
of certain brave islands of grass,

temporary shoulder-wide rivers
where herons ply their twin trades

of study and desire. I’ve seen
two white emissaries unfold

like heaven’s linen, untouched,
enormous, a fluid exhalation. Early spring,

too cold yet for green, too early
for the tumble and wrack of last season

to be anything but promise,
but there in the air was white tulip,

marvel, triumph of all flowering, the soul
lifted up, if we could still believe

in the soul, after so much diminishment ...
Breath, from the unpromising waters,

up, across the pond and the two-lane highway,
pure purpose, over the dune,

gone. Tomorrow’s unreadable
as this shining acreage;

the future’s nothing
but this moment’s gleaming rim.

Now the tide’s begun
its clockwork turn, pouring,

in the day’s hourglass,
toward the other side of the world,

and our dependable marsh reappears
—emptied of that starched and angular grace

that spirited the ether, lessened,
but here. And our ongoingness,

what there’ll be of us? Look,
love, the lost world

rising from the waters again:
our continent, where it always was,

emerging from the half-light, unforgettable,
drenched, unchanged.

Is it teh funny? Discuss

Above is a YouTube video clip (link to it on YouTube here) from the cable comedy show Campus Ladies, an episode where the women research and then report to a class on the benefits of being "handicapped." Guest stars Janeane Garofalo.

This needs greater visual description, which I will add very soon. Here's the description from the Oxygen channel website:

When Joan and Barri's Sociology Professor asks his class to "live the life of someone struggling outside mainstream society," the Campus Ladies choose to be handicapped. But after Cassie Dipetrio (guest star Janeane Garofalo) befriends a wheelchair-bound Joan, the "perks" give her second thoughts.

Update: Okay, a visual/audio description. The clip is over four minutes long. It begins with the two women characters, Joan and Barri, getting out of an SUV where they've just parked at a curbside disabled access parking space. "We got the sweeeet spot Joannie!... And look where we are, right in front of the student store! The perks of being handicapped!" As they are chatting and getting an old Everest & Jennings manual out of the back of the vehicle, two young women come along and one of them says, "Excuse me. This spot is for handicapped people." Barri laughs a little and says, "Wellll, I don't know if you can tell, but my friend here is confined to a wheelchair." As she says this, Joan and she open the folded chair and Joan sits in it. Barri continues as she unfolds a white cane and puts away her dark sunglasses: "And I am legally blind." (Barri got out of the driver's seat of the SUV as the clip began.) The young women look at each other in amazement and shrug.

The scene switches to the inside of the student store where the women shop and chat:

"Do we get a discount? A handicapped discount?"

"We do, we get a huge quantity off just because we're (whispers) handicapped."

Joan is looking at tops hanging on a wall and gets out of the wheelchair to stand on the seat and reach for a shirt way up high. A woman (actor Janeane Garofalo) comes up to them in a manual chair, sees Joan, apparently surprised that she is out of the chair and can stand. She says, "Joan?"

When Joan and Barrie see her, they apparently know her and one of them says about Joan standing, "Hi Cassie, look it's-- Ohhh, it's a miracle! Oh, wait! Cassie!" Cassie wheels away quickly, upset. "Cassie! Cassie! Cassie!" they call after her. Barri: "Oh boy, I think she knows."

Joan sits back in the chair, shakes her head and says "Damn."

The scene switches again, this time to a college classroom where Barri and Joan are speaking to the other students while a male professor stands by and the listening students sit looking sceptical or frowning. The women finish each other's sentences in their enthusiasm: "There are so many perks to being handicapped, here are just some of them: Number one, they have whole special rooms and walkways devoted to handicapped people. Number two, you always get to park in a handicapped parking spot, even if you're blind and if you had a car, that's where you would park. Number three, you get super-duper discounts all over campus! I don't know if you guys know that. In the cafeteria, you always can get to the front of the line, and people always help you. Oh my gosh! Everyone's willing to carry your stuff, whether you're blind or in a wheelchair. You kind of have it made. So what we learned from being handicapped for a week, other than it was tremendous! Oh. My. Gosh! Did you guys have as much fun as we did? If you didn't have to lie to people and be dishonest, which we did with all the disabled kids on campus, and take advantage of a lot of stuff you wouldn't normally take advantage of... other than that it. was. out of sight! And what we learned overall is that handicapped people don't face nearly as many obstacles as you and I do in our daily life. They just cruise! It's excellent!"

Again the scene changes to what I believe is supposed to be a lounge area on campus for disabled students. Pictures on the wall show an empty wheelchair on a beach and another has crutches. There's a Foosball Table in the background and a half dozen students in the room. Janeane Garofalo's in her wheelchair in the center telling a young woman who uses a walker something about "I prefer you wear the helmet..." as Barri and Joan enter.

This is taking much more time than I expected, so a summary of the remaining dialogue: Barri and Joan apologize to the disabled students if they were offended, but assert that everyone is the same except that they (J & B) can run and see and escape buildings in earthquakes, etc. Joan's wheelchair is there, apparently having undergone some repairs and an heated discussion ensues where Joan says she's not sure she should take it back and Janeane's character repeatedly insists she can't have it back, they're not giving it to her. Joan doesn't appear to hear and keeps saying she can't accept it. Then the two mention donating money to make the campus "Snack Shack" wheelchair accessible and Janeane's frown becomes a smile.

One last scene occurs in the auditorium of some theater where the women use disabilities to get into the venue.

Coming Tuesday -- Info pulled upon request

The full info on Tuesday.

Update: Info here.

Friday Poetry

Goodbye to Tolerance
by Denise Levertov

Genial poets, pink-faced
earnest wits—
you have given the world
some choice morsels,
gobbets of language presented
as one presents T-bone steak
and Cherries Jubilee.
Goodbye, goodbye,
I don’t care
if I never taste your fine food again,
neutral fellows, seers of every side.
Tolerance, what crimes
are committed in your name.

And you, good women, bakers of nicest bread,
blood donors. Your crumbs
choke me, I would not want
a drop of your blood in me, it is pumped
by weak hearts, perfect pulses that never
falter: irresponsive
to nightmare reality.

It is my brothers, my sisters,
whose blood spurts out and stops
forever
because you choose to believe it is not your business.

Goodbye, goodbye,
your poems
shut their little mouths,
your loaves grow moldy,
a gulf has split
the ground between us,
and you won’t wave, you’re looking
another way.
We shan’t meet again—
unless you leap it, leaving
behind you the cherished
worms of your dispassion,
your pallid ironies,
your jovial, murderous,
wry-humored balanced judgment,
leap over, un-
balanced? ... then
how our fanatic tears
would flow and mingle
for joy ...

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

Who Said It Was Simple
by Audre Lorde

There are so many roots to the tree of anger
that sometimes the branches shatter
before they bear.

Sitting in Nedicks
the women rally before they march
discussing the problematic girls
they hire to make them free.
An almost white counterman passes
a waiting brother to serve them first
and the ladies neither notice nor reject
the slighter pleasures of their slavery.
But I who am bound by my mirror
as well as my bed
see causes in colour
as well as sex

and sit here wondering
which me will survive
all these liberations.

Gimp Etiquette

In comments to my BADD post below, Attila the Mom links to Sunny Dreamer's list of Wheelchair Etiquette and Mr. Soul says:

Wheelchair/gimp etiquette is different in different places. New Yorkers will promptly pick you up if you fall on your face, and then walk on without even saying "hello"--which to me is weird! OTOH, southerners say hello--or "hey!"--to EVERYBODY, therefore if they don't say hello to you, it is evidence of disability-phobia and avoidance.

I am curious about gimp-etiquette elsewhere.

Speaking not just about wheelchairs but more generally, here's a roundup of what I recall some folks have said:

Bint at My Private Casbah has written about this:

During the periods of time that I've lived outside of the south, I came to see that people in those areas are just a lot less friendly--at least in the way that southerners would probably describe friendliness. It's not that they are necessarily rude but they just don't seem to seek out social interactions as much as we do down here. For instance, if someone saw me eating alone at the local coffeeshop one morning and they started asking me questions about my disability, I wouldn't consider it rude at all. It's just something we do down here. We will hold a conversation about almost anything with a stranger. On the other hand, striking up a conversation with the barista or customer at a northern coffeeshop, just isn't going get the same reaction.

I think it would be a bit interesting to find out if being questioned (about your disabilities) by strangers bothers other southern PWD as much as it does those who are from the north. I wonder if others feel like I do when it comes to these sort of questions from others who have disabilities. When I encounter other disabled people and they ask me questions, it feels less like talking to a stranger. Even if they ask me questions that go beyond what I'd probably be comfortable telling a stranger, it doesn't really seem rude to me because I don't have to feel any pressure to give them the super-cheerful answers that I sometimes feel obligated to give non-disabled people. Does that make sense? I dunno.

And so has Sara at Moving Right Along. Here on the reticence of New Englanders and trying to bridge that gap:

So sometimes I would have a female customer with no hair, far, far less common than a male customer with no hair, and maybe she had that grey transparency to her skin people in chemo have, and maybe she didn't. Maybe she wore a kerchief, because she was okay with the baldness, or a wig, because she felt she had to hide it. And I would never know the truth of this person's life unless she chose to volunteer it. But I had all this -- yes -- love, and this newly sprung hole in the wall of reticence through which it all just wanted to leak over everyone. Yet there was nothing I could do except smile.

Sometimes I would think I knew the truth, and I would smile extra big. And sometimes I would ask people how they were in a voice that I tried to make thick with extra meaning, like some kind of metaphorical secret handshake. And sometimes they would beam back at me or smile sadly back at me in ways that hinted "handshake received and returned." And sometimes they wouldn't.

And Steve at Planet of the Blind has said quite a bit about helpful strangers generally. I forget if he has expounded on regional differences, or global, since I know he's traveled, though he hints at it a bit here:

And all you wanted was coffee. Maybe a cholesterol busting eggs and bacon dish. Yes and you wanted silence. You wanted a moment's worth of freedom from American sincerity. You had wanted to sit, unclouded, contemplating your earthly duties with nothing more than a bite of scrambled eggs and a swig of coffee.

O the vastness of disability. O the lonely geography of America and all its respective, shattered childhoods...

I have to think about this a little before I generalize between my experiences in Minnesota, Illinois and Arizona, the places I've lived. But I will say that there are distinct differences between a rural Midwestern town and a urban university environment in the American Southwest.

Anyone else?