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

***

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.