Korean girl still to be cared for by family of rapists

Here's the story in its entirety from The Korea Times, the only English-language, non-blogger source I could find for it:

Court Ruling on Rapists Draws Anger

By Kim Rahn
Staff Reporter

A court handed down suspended jail terms to four family members who repeatedly raped a teenage relative who suffered from an intellectual disability.

The Cheongju District Court Thursday sentenced an 87-year-old grandfather and two uncles of a 16-year-old girl to four-year suspended prison terms for sexually assaulting and raping the girl for the last seven years. Another uncle received a three-year suspended jail term.

The court acknowledged that their crime was ``sinful'' as they used the young girl, who is their family member, to satisfy their sexual desires. But it gave the suspended terms, saying, ``The accused have fostered the girl in her parents' place. Considering her disability, she will also need their care and help in living in the future.''

The court added it took the accused people's old age and illness into consideration.

Citizens strongly denounced the ruling, saying the punishments were too lenient for the grave crime. Internet users said it is absurd to release them to ``take care of her,'' as she needs help from others, not from rapists. They also said those committing such a crime do not deserve consideration regarding old age or illnesses.

Some bloggers are collecting signatures to oust the judge who made the ruling. The prosecution also decided to appeal. ``One of them even has a previous conviction for rape but was given a suspended term. The ruling is unacceptable,'' a prosecutor said.

English-language bloggers in South Korea have been passing this story around for a week now, mostly discussing their outrage at how bad the Korean justice system is at punishing sexual assault. This is juxtaposed against another news story of Korean prosecutors demanding a famous actress be jailed for 18 months for adultery, though bloggers are focusing little on the disability aspect and more on the sexual politics of the Korean judicial system and Korean culture. Disability, in the English-language analyses of this news, is mostly invisible. It's not clear to me how it rates in importance among Korean citizens.

h/t Feministing

"I had a choice, and I chose life. Does that make me pro-choice or pro-life"?

Tierney Temple Fairchild writes in the Washington Post about her ten-year-old daughter and what it means to her to "choose life":

I had a choice, and I chose life. Does that make me pro-choice or pro-life? Our political parties tell us we can't have it both ways. If I am pro-choice, then I must be for abortion. If I am pro-life, I may be lauded for a heroic choice when in fact none existed.

She continues:

In this economy, I must reflect on the circumstances that allowed us to make ordinary what some view as heroic. We were fortunate to have a health-care plan that covered Naia's medical bills. We were fortunate to have enough money to cover three weekly therapies carrying co-pays of $10 each. We were fortunate to have the educational backgrounds necessary to read research and advocate inclusive education for Naia. We were fortunate to have the lessons of discrimination and perseverance from another choice some also label heroic, interracial marriage.

Now, I look at my budding 10-year-old, and I see her beauty, poise and humor, not her disability. What I have learned is that we are not exceptionally burdened. Naia has some novel developmental and social challenges. Nevertheless, we and others are often struck by how typical she is, integrating with peers, reading on grade level and riding horses. All choices may not have the same result, but it is crucial that we all have the opportunity to make our own decisions.

If it's our choices that define us, choices that allow us to face down fears and lead us to our greatest achievements, what might come from taking those choices away?

Fairchild references Sarah Palin and her infant son Trig, but doesn't specifically mention this fact: Palin doesn't believe in allowing women this choice and neither does John McCain and the Republican party.

Oh happy day, tomorrow!

Vote if you haven't already.

h/t Patricia E. Bauer

Slumgullion #45

Yeah, I'm still here. I got new eyeglasses this weekend, and while it may take a few days to adjust to the bifocals (!) I hope to be spending less time squinting and more time online again.

In the meantime, this is the news I'm catching up on today:

"What happens when chronically ill kids grow up?" -- A June article in the Houston Press explains the gap in health care for disabled children who come of age. It's an important topic I haven't seen covered in such depth before, but, hello... the "first large generation of chronically ill pediatric patients to reach ­adulthood"? I'll be 40 in October, and I'm really tired of hearing how all the seriously disabled children before now died before needing adult health care. We're here. We've been here. A number of us have even been blogging online for quite some time. It's just that we're mostly invisible to the mainstream media.

"Girls parents and agency face charges in starvation" -- Danieal Kelly of Philadelphia was 14. She died in 2006 and the charges have just now been filed. Mark at The 19th Floor writes about Danieal and the grand jury indictment (pdf file with one very graphic photo) of nine people for her needless suffering and death.

"Immigrants facing deportation by U.S. hospitals" -- From a NYT series on how the government and others "compel illegal immigrants to leave the United States." Here's an excerpt:

Eight years ago, Mr. Jiménez, 35, an illegal immigrant working as a gardener in Stuart, Fla., suffered devastating injuries in a car crash with a drunken Floridian. A community hospital saved his life, twice, and, after failing to find a rehabilitation center willing to accept an uninsured patient, kept him as a ward for years at a cost of $1.5 million.

What happened next set the stage for a continuing legal battle with nationwide repercussions: Mr. Jiménez was deported — not by the federal government but by the hospital, Martin Memorial. After winning a state court order that would later be declared invalid, Martin Memorial leased an air ambulance for $30,000 and “forcibly returned him to his home country,” as one hospital administrator described it. . . .

Mr. Jiménez’s benchmark case exposes a little-known but apparently widespread practice. Many American hospitals are taking it upon themselves to repatriate seriously injured or ill immigrants because they cannot find nursing homes willing to accept them without insurance. Medicaid does not cover long-term care for illegal immigrants, or for newly arrived legal immigrants, creating a quandary for hospitals, which are obligated by federal regulation to arrange post-hospital care for patients who need it.

American immigration authorities play no role in these private repatriations, carried out by ambulance, air ambulance and commercial plane. Most hospitals say that they do not conduct cross-border transfers until patients are medically stable and that they arrange to deliver them into a physician’s care in their homeland. But the hospitals are operating in a void, without governmental assistance or oversight, leaving ample room for legal and ethical transgressions on both sides of the border.

Indeed, some advocates for immigrants see these repatriations as a kind of international patient dumping, with ambulances taking patients in the wrong direction, away from first-world hospitals to less-adequate care, if any.

“Repatriation is pretty much a death sentence in some of these cases,” said Dr. Steven Larson, an expert on migrant health and an emergency room physician at the Hospital of the University of Pennsylvania. “I’ve seen patients bundled onto the plane and out of the country, and once that person is out of sight, he’s out of mind.”

"Taking the long way around" -- From Oceanside, California, an example of how higher gas prices and budget cuts that have led to more crowded public transit is pushing wheelchair users off the bus. We'll be hearing more stories like this, I suspect.

"Her new role is fighting old label" -- Ms. Wheelchair America is interviewed by the Houston Chronicle. Beauty contests for disabled women have been covered here before, but I do like the approach to her new job that the current Ms. Wheelchair America, Michelle Colvard, seems to be taking. She says:

They're two main ways that the media portray women who have disabilities. It's either kind of passive, needing help, victim, suffering. You hear a lot of those words, wheelchair-bound, these negative-word connotations. ... On the other hand, women with disabilities who have done pretty well for themselves are put up on a pedestal. I think sometimes that's a bad thing, too.

I feel sad, too, though unrelenting rage is more appropriate

Many who blog about autism have written about Alex Barton, the Florida five-year-old, whose Kindergarten teacher led his classmates in voting him out of the class after she also had the students tell him, as he stood at the front of the class, what they didn't like about him. From a news report:

After each classmate was allowed to say what they didn't like about [Melissa] Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

Melissa Barton filed a complaint with Morningside's school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said. . . .

Barton said after the vote, Portillo asked Alex how he felt.

"He said, 'I feel sad,' " Barton said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said. . . .

Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special" over and over.

Barton said Alex is reliving the incident.

The other students said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

Last Crazy Horn at Odd One Out is compiling a long, impressive list of posts on this news story as well as links to some resources responding to the topic.

The Most Important Disability Policy

I had a hard time choosing one topic for this year's BADD. There's the presidential candidates' disability policies, McCain's refusal to even listen to the concerns of disabled Americans worried about institutionalization, funding cutbacks sure to threaten the mobility and health of disabled Americans (and all Americans) even more in the future.

A judge in Kentucky recently found a man named Ohmer Portwood guilty of breaking the pedestrian code for driving his wheelchair in the road, even though Portwood reportedly has nowhere else to be because of a lack of safe and accessible sidewalks. The judge declared that the city of Lancaster's failure to comply with the ADA was a separate issue.

Pharmaceutical companies lie for profit, children are given shock therapy, returning military vets are discharged without adequate health care.

And yet, the greatest example of disablism at work in the world today is this immoral war in Iraq that terrifies, maims, and kills while also destroying the existing social structure of supports that could help manage the everyday needs of Iraqi citizens. Maybe it sounds like a stretch to call civilian war casualties disablism in action, but what is disableist policy if not a policy that holds the lives, bodies and minds of others so cheaply?

What follows are 20 photos, mostly of Iraqi children.* Some are very hard to look at -- consider this a trigger warning. I've added my usual image descriptions for accessibility for all but they are limited to descriptions of what I see and lack specifics of time and place. Feel free to comment if you see something different in the images.











Image description: A young girl -- no more than three-years-old -- is in the foreground being carried by an adult. In the background, behind other people, are black trails of clouds from something burning. The girl is frightened and crying.












Image description: Under a sky blackened by sooty clouds, a tank follows a family that flees. A man and three children all hold hands as they move toward the camera. The background appears to be all desert. They carry nothing with them.











Image description: A close-up of a young girl facing the camera, her eyes brimming and wet with tears. In the background a military tank comes down the street.












Image description: A boy and girl, both perhaps age five, stand before a man in full military gear who runs a metal-detecting wand in front of the girl's chest. She stands with arms outstretched so the man can sweep her for explosives.













Image description: In the foreground, the torso of a man standing in full military gear and carrying a machine gun. In the background a child, perhaps four-years-old, sits, with both hands raised to cover her face.
















Image description: A young girl (maybe six?) sits cross-legged, arms wrapped to hug herself and cries, open-mouthed. A cinder block wall next to her is spattered with blood and just in front of her an adult lies in the grass, with only his feet and calves visible in the photo.
















Image description: A girl, maybe eight-years-old, sits cross-legged on a cushion, crying in anguish (and perhaps, pain) as she faces the camera. Her face and neck are spattered with blood, and the front of her pink shirt is wet with blood, as well.












Image description: A bearded man sits on a bed's bare mattress wearing only an undershirt and shorts. His feet are bare and dirty. He cradles a small child in his arms. The child appears to be unconscious and wears only an olive t-shirt and a white bandage over the top half of his head, with blood soaking through at the top.











Image description: A toddler lies on his back on a bed, his right arm covered in heavy white bandages and his shirt pulled up to reveal another bandage on his chest. He is crying.












Image description: A pretty girl (maybe eight?) lies on her side looking solemnly to the camera. The hand of her arm that lies along the pillow before her face is heavily bandaged.
















Image description: A girl, perhaps ten-years-old, lies stretched on a gurney. One hand is bandaged and the other holds a child's drawing. Her bare legs show serious, deep wounds, with about half of both her right knee and left ankle missing as if very large bites of flesh were taken from each.
















Image description: A child of three or four lies sleeping on her side, face nestled against the hip of an adult. Her left knee and foot are lightly bandaged, and the right leg is heavily bandaged from the top down to where it ends above the ankle.












Image description: A young boy lies, half-unconscious, with a bandage over his nose possibly holding a naso-gastric tube in place. His entire torso is covered in heavy bandages. In the background a woman sits keeping vigil.











Image description: A boy lays on a bare mattress, on his stomach but resting his upper body on his elbows. The white clothes he wears are all stained with blood, as are his hair, face and legs. He stares pensively off-camera.
















Image description: A man in Arab dress carries an unconscious girl past a jumble of bodies in the background. The girl's clothes are torn and a grotesque jumble of flesh and bone hangs where her right foot should be.
















Image description: A man carries a girl in a school uniform across a courtyard. She is crying and blood runs across her face, down her bare legs and across her sandals.











Image description: A close-up of a girl's face as she stares blankly toward the camera. While her eyes appear undamaged, the skin of her forehead, nose and cheeks is badly damaged, perhaps burned.
















Image description: Two women, one in a white medical coat and the other an older woman in Arab dress, stand over a toddler laying on a table crying. Heavy bandages cover the child's torso and crotch. The child's left leg is entirely missing.











Image description: A boy lies in a bed on his back. His heavily-bandaged left forearm is raised to rest across his forehead. His right arm ends a few inches below the elbow with the bare stump in the foreground. His torso is a mass of stitches and bandages, with a chest tube adhering to his right abdomen.












Image description: A boy lies in bed on a colorful blanket, conscious and trying hard not to cry as a hand wipes his cheek. A bandage is wrapped around his forehead. Both of his arms are almost completely missing, with the stumps in white bandages. His chest and abdomen are covered in what seems like a white paste, though the black burned skin is clearly visible beneath the salve.


*Given that these photos were mined from the internet, it's certainly possible they are not all of children in Iraq under the current occupation. But I found them on sites that presented them as such, and they are, if nothing else, all photos of children living under violent circumstances, many in the clear presence of military occupation that leads to their great injury and harm. My BADD post is late because I was trying to find mainstream media news sources for these photos that might include photo credit and caption info. That's proven difficult but I'll happily accept any info on any of these photos' origins that anyone might have.While these photos were at various sites, they were also grouped together at a site called Children of Iraq, where dozens of similar ones can be seen.

Phoning It In

Last month, the state of Massachusetts issued a report on an August 2007 incident at one of the group homes of the Judge Rotenberg Center (JRC) where, on the basis of a phonecall, two boys were awakened in the night and repeatedly given electric shocks by the adults responsible for their care. If you're not already familiar with the JRC in Massachusetts or the aversive therapy used there on institutionalized disabled children, Mother Jones provides details in an article published this past September.

Eight states pay up to $200,000 per student, per year, to send otherwise "unplaceable" children with autism, psychological and behavioral disorders to the residential institution that uses aversive therapy to control many of its young inmates. Very generally, aversive therapy involves the use of a wide range of unpleasant stimuli to discourage specific behaviors. At JRC, aversives include electric shocks, food deprivation and isolation. On children.

The phonecall that led to the nighttime torture of the two boys turned out to be a prank. From the Boston Globe:

The report says none of the six staff members in a Stoughton residence run by the Judge Rotenberg Educational Center on the night of Aug. 26 acted to stop the harrowing events for three hours, despite ample reasons to doubt the validity of the caller's instructions to wake the boys in the middle of the night and administer painful shock treatments, at times while their arms and legs were bound.

The caller said he was ordering the punishments because the teenagers had misbehaved earlier in the evening, but none of the home's staff had witnessed the behavior that the caller cited. As the two boys' screams could be heard throughout the house, near-mutiny erupted among the other boys, who insisted that the accused teenagers had violated no rules. One boy even suggested the call was a hoax, according to the report by the Massachusetts Department of Early Education and Care, which licenses group homes.

The staffers, inexperienced and overworked, were described as concerned and reluctant, yet nobody verified the orders with central office, nor did anybody check treatment plans for the two teenagers to be sure they were permitted to receive that degree of shock therapy.

The damage was done before the staff at the JRC realized their "error":

By the time a call was finally placed to the central office and staff members realized their mistake, one teenager had received 77 shocks, well in excess of what his treatment plan allowed, and the other received 29. One boy was taken to the hospital for treatment of two first-degree burns.

The full account described by the Boston Globe is harrowing and beyond awful. The result of the state report is the suspension of seven JRC employees. But what I find telling is that because of the state investigation the following changes are supposedly being implemented at the JRC:

• Expanded training for staff -- Many of the suspended employees had been working at the JRC for less than three months at the time of the August incident. High employee turnover is also suggested by Google search of the center, which pops up numerous ads for employment.
• Institution of new telephone verification procedures -- Electric shock orders via telephone will continue to be part of the official procedure of aversive therapy, as is the incredibly extensive video surveillance of every moment of inmates' lives.
• Elimination of delayed punishment -- On its own, prior to this incident, awakening inmates through administration of electric shock was not a violation of procedure? Children were routinely hooked up to shock equipment even while they tried to sleep, apparently.
  

Supporters of JRC and its aversive therapy say it effectively changes behavior. Of course it does. Extended torture with no end in sight tends to do that. One of the axioms of torture is that anyone can be broken, given time and cruel enough methods. There are some inmates of JRC receiving electric shock that have been there for decades.

This post is part of a Blogging Against Aversives event. You can find links to writing from other bloggers on the topic here. Or check out Amanda Baggs' extensive and well-indexed writing on aversives, behavior modification, JRC, and other related topics at Ballastexistenz. This post of Amanda's is especially informative. Feel free to add links of other writings on this in comments.

Cross-posted at Alas, A Blog

Katie Jones and Deus ex machina

The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie's story and the larger issues. Comments everywhere have been... illuminating.

I haven't written about this before now because these sorts of articles from the mainstream media -- this one involving children, parental control of a child's well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, "special needs" schooling, and "right-to-die" versus the right to not be coerced to die -- contain so much information that is either misleading, incomplete or biased that I can't think where to begin.

Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.

Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I'm not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn't discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article's end:

Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie [Katie's four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.

Besides, anything that beeps isn't allowed in the Jones house.

"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.

The group hug part is completely untrue. I've had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It's actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.

And the "no beeping rule"? There's the real reason for the DNR right there. Better dead than using a machine that might make some noise.

I understand machines are scary. I get that because I've needed to make my own adjustments to them and also because I see it in peoples' eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I'll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.

I'd like to hear much much more about the Jones' "no beeping rule." Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie's parents don't feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die "peacefully" from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?

It's not really the beeping, of course. And the answer to Trinity's question:

Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?

seems to be that it didn't seem relevant to the point of the article. Katie's consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.

Further discussion can also be found at Wrong Planet, an online forum for people with Asperger's Syndrome.

Cross-posted at Alas, A Blog

"Ransom notes" ad campaign ends

Ari Ne'eman, president of the Autistic Self-Advocacy Network (ASAN) that led the protest against the NYU Child Study Center's "Ransom Notes" ad campaign, announces:

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that announcement here (at the NYU Child Study Center's website). The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember: "Nothing About Us, Without Us!"

It didn't look promising at first. This past weekend the images of the ads at the Child Study Center's website were briefly taken down, but they were back up when the New York Times Sunday coverage of the ads quoted Koplewicz as saying the Center was determined to "stick with it and ride out the storm" and even expand the campaign to four other cities soon.

Kristina Chew, PhD., who blogs at Autism Vox and was also quoted in the NYT article, has been providing relentless commentary, coverage and linkage to dozens of blogs writing about the ads. To follow those posts chronologically go here, here, here, here, here and here.

Or check out Furious Seasons where Philip Dawdy makes some interesting connections in noting that Koplewicz co-authored a study of Paxil for the pharmaceutical company Glaxo SmithKline that apparently exaggerated benefits and downplayed adverse effects in treating adolescent depression. Koplewicz is one of dozens of co-authors of that study, but Dawdy wrote earlier this year:

"Some very smart people have taken on many of the issues around Study 329 and Paxil/Seroxat and, based upon the evidence, I'd have to say that it's fair to assert that none of us in the patient world should trust anyone who had a hand in the study (unless they want to suddenly recant the work) on absolutely anything they say about mental illness. At a minimum, we should be wildly skeptical of any claims they make."

Dawdy hasn't been the only one to speculate about what corporate interests might have connections to the Ransom Notes ad campaign. Many commenters to the NYT article wondered about possible pharmaceutical backing for the ads, though I've seen absolutely no direct evidence of this. It seems to have been yet another case of do-gooders offering a message that didn't take into account the experiences and feelings of those they set out to help.

In the Center's announcement of the end of the ad campaign, Koplewicz writes:

Though we meant well, we've come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.

Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.

We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.

Cross-posted at Alas, A Blog

The "ransom notes" campaign

We have your son.We are destroying his ability for social interaction and driving him into a life of complete isolation. It's up to you now…Asperger's Syndrome

The NYU Child Study Center has a new public education campaign designed to create awareness of psychiatric disorders. Ads appearing in magazines and on NYC billboards and kiosks are mock ransom notes signed by specific psychiatric disorders: ADHD, Asperger's Syndrome, autism, bulimia, depression and OCD. Here's the ad for bulimia (click on the ad below to see it larger or read text description here: Cut and paste words from magazine text form a ransom note: "We have your daughter. We are forcing her to throw up after every meal she eats. It’s only going to get worse. --Bulimia" Below the note the ad says, "Don't let a psychiatric disorder take your child" and gives info for the NYU Child Study Center.):

Text for the other ads reads:

We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning…Autism.

We are in possession of your son. We are making him squirm and fidget until he is a detriment to himself and those around him. Ignore this and your kid will pay…ADHD

We have taken your son. We have imprisoned him in a maze of darkness with no hope of ever getting out. Do nothing and see what happens…Depression

We have your daughter. We are making her wash her hands until they are raw, everyday. This is only the beginning…OCD

The NYU Child Study Center, celebrating its tenth year and the relaunch of its public information website AboutOurKids.org, says:

The idea behind the “Ransom Notes” is that, all too often, untreated psychiatric disorders are holding our children hostage. These disorders rob children of the ability to learn, make and keep friends and enjoy life.

"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We understand the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

And people are joining the dialogue. The Autistic Self-Advocacy Network (ASAN) has gathered 14 other disability rights organizations and issued a joint letter (.pdf file) calling for withdrawal of the ad campaign. (There's also a petition for anyone to sign in support of the ASAN joint letter and appeal.) In part, the letter reads:

While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.

and

Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them.

The letter also notes that the ad campaign supports the idea that people with these psychiatric disorders -- note that autism and Asperger's Syndrome are labeled psychiatric disorders here -- may be dangerous to others around them.

Does anyone else's mind jump to Columbine-type scenarios when they see "children" and "hostage" linked? Mine did.

h/t to Stephen Drake at Not Dead Yet

Cross-posted at Alas, A Blog

Robert Latimer denied parole

Yesterday, a Canadian parole board in a prison near Victoria denied day parole to Robert Latimer. Latimer is the Saskatchewan farmer serving a life sentence for the second-degree murder of his 12-year-old disabled daughter back in 1993.

Some facts: Tracy Latimer acquired cerebral palsy from oxygen deprivation at birth. She was unable to walk or talk and had seizures every day, but she could smile, laugh and cry. She went to school each day on a bus, she could communicate likes and dislikes. She recognized the people she loved. Tracy had several surgeries and was scheduled for a fourth on the day of her death. (The back surgery she had to correct scoliosis and the complication afterward of a steel bar migrating in her hip sound identical to my own Harrington rod surgery experiences.)

On October 24, 1993, Robert Latimer placed his daughter, Tracy, in the cab of his pickup truck, connected a hose to the exhaust, ran the hose in the vehicle's window and gassed his daughter to death. He hid the evidence and lied about her death until an autopsy revealed foul play. Then he confessed.

But he has never expressed remorse, which is why he was denied parole:

The parole board decided the 54-year-old Saskatchewan farmer had not developed any insight into his crime. Latimer insisted during his parole hearing Wednesday that killing Tracy was the right thing to do.

He remained unapologetic and angry at the legal system.

"The laws are not as important as Tracy was," he said.

"I still feel don't feel guilty because I still feel it was the best thing to do."

While there's always been a frightening and enraging degree of support for Latimer's actions (which, interestingly, played out while Susan Smith was simultaneously being castigated for the murder of her nondisabled children in the U.S.), much of the fervor has been about the mandatory sentencing that required him to serve at least ten years in prison. The Canadian Supreme Court overturned a lighter sentence that failed to follow sentencing guidelines. He's currently spent seven years in jail.

In an appeal to his conviction, Latimer contended that he "had the legal right to decide to commit suicide for his daughter by virtue of her complete lack of physical and intellectual abilities."

Grant Mitchell, a lawyer representing disability groups in relation to the case, said yesterday:

"I think it's really sad that he's still maintaining that he committed no crime ... that killing a member of his family was a private matter that the public had no business getting involved in. And I think it's particularly concerning that when he was asked by the Parole Board whether he would do the same thing if another member of his family were in distress, he said he wasn't sure what he would do."

I agree with Mitchell. More importantly, I agree with the guilty verdict that holds Latimer accountable for murdering his daughter. I am less certain how much time in prison is appropriate, but since Latimer reportedly wished to use his day parole to spend time furthering the cause of euthanasia, I'm content that he remains in jail.

Cross-posted at Alas, A Blog

Art program for disabled children in Uzbekistan

I've been posting images of art about disability that I've found on Flickr lately. But there's a program in Uzbekistan that uses art to help integrate disabled children with their nondisabled peers. From a Unicef news story:

Renata Karimova among over hundred of children does not suffer the fate of many other peers. Having come to the "SANVIKT" art rehabilitation Center, the children get opportunities for developing their creative abilities and communicating with healthy peers. "It is impossible to solve a problem of disabled children integration into everyday life without joint education and communication"- says Gulsara Rajapova, the Center Director. "It is a valuable opportunity for healthy children to learn to be tolerant, surmount deep-rooted prejudices and to look widely on life", -she added.

For many children staying with the Center is the opportunity for developing their creative abilities, increasing their capacities, acquiring necessary life skills and knowledge for the future realization of their potential.

And despite some obvious language translation problems, here's another informative article on the program.

The program's site, Sanvikt, is not in English. (Russian, maybe?) And the images of the art and people in the program are lovely, but not still images, so I do not know how to put an example here or even describe for the visually impaired, except to say there are dozens of images showing rooms filled from wall to ceiling with art, images of children working on art, and a big mural being painted by many. Anyone with suggestions of how to capture an image or two to put here, please enlighten me.

Preschoolers: What happens when people get old?

Image description: A large piece of butcher paper hangs in an outdoor display of drawings by preschoolers prompted by the question "What happens when people get old?" This paper shows a simple line drawing of a character in a wheelchair. The character looks a little like a mouse's head sticking out of a large square cart on wheels. Below an adult has printed a child's thoughts, "You go in a wheelchair. Your body is a little twisty."

Flickr: Frauenfelder

Another insult and apology

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

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

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

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

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

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

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

Wait. Yes, I can.

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

Gay & Lesbian Alliance Against Defamation (GLAAD) President Neil G. Giuliano criticized Lewis this morning:

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

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

And by this afternoon, all was forgiven after Lewis issued an apology for a "bad choice of words."

GLAAD responded:

“GLAAD thanks Jerry Lewis for his swift and direct apology for this incident,” stated Giuliano. “We join millions of Americans in applauding the important work of the Muscular Dystrophy Association and wish MDA and Mr. Lewis much continued success in their efforts.”

Whew! I'm happy that's over!

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

Yes, the road to hell is paved, but that doesn't mean it's accessible

Good intentions are tricky. With philanthropy, you can get so invested in your own self-righteous helpfulness that you fail to see you aren't respecting the objects of your charity and their needs. On a personal level that could be called narcissism. On a broader level, it is the annual MDA* Telethon in the United States, hosted by comedian Jerry Lewis.

The telethon has historically relied on pity to sell the need for a cure and Lewis is the unabashed champion of portraying disabled people as pathetic victims and unemployable "half-persons" for the cause. He's also completely unapologetic about demeaning disabled people to raise cash. Never mind that pity never helped any disadvantaged group of people gain their own place in the world. Never mind that he's raised billions for that still-elusive cure while disabled folks languish in institutions and remain largely unemployed because of societal barriers maintained by attitudes like his.

Actor Michael J. Fox, who lives with Parkinson's disease and raises funds for research on it, once said "I feared pity because pity is a step away from abuse." Fox has also stated that his life goes on without a cure, and he's been his own spokesperson, forthrightly showing his impairments while engaging the public thoughtfully and open-mindedly on the related politics of stem-cell research. He's been anything but a pitiable victim, even though he is fighting the clock.

Fox knows pity is harmful, and he's not wrong about it's relationship to abuse. For one thing, a life that is considered hopeless without a cure is held rather cheap. But more to the point on good intentions, when told repeatedly over the years by many former MDA poster children that the telethon experience is demeaning and damaging, Lewis shifts directly from pity to verbal abuse. Over and over again.

Don't believe it? Here's one vague apology the MDA issued to try to shield itself from the damage it's spokesperson causes**, even as they keep him on the job. The offensive remark the apology doesn't really mention is when Lewis said: "Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"

Jerry Lewis has good intentions, you say. The money is for a good cause so it doesn't matter what message brings in the dough. Not every disabled person agrees -- we're a very diverse lot -- but I say the price of pity is far too high. Jerry Lewis has good intentions? I know where he can go with them.

Image descriptions:

The banner at the top of this post is for this Blog Against the Telethon event. It reads, "Until There's a Cure... There's a Telethon: Blog Against the Telethon -- Abolish Charity and Cure Mentality". The text is bold over a black-and-white photographic background of a little blonde girl's face close-up at right and Lewis in a tuxedo pointing a finger toward her downstage at left.

The second image is a color photograph of a person in a manual wheelchair wearing a black t-shirt with bold pink lettering that reads "Piss on Pity" while holding a sign that reads "Dump Jerry". It's taken in 2003 by Tim Wheat of MCIL.

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

* Muscular Dystrophy Association

** Other damage? In 2000, Jerry Lewis said this at a comedy festival: "A woman doing comedy doesn't offend me, but sets me back a bit. I, as a viewer, have trouble with it. I think of her as a producing machine that brings babies in the world." The Chicago Sun-Times report says that he apologized later to avoid a backlash in fewer telethon donations. Here's the humorous response from several female comedians.

Movie review: Notes on a Scandal

Along with Testament, Penny mentioned in comments of an earlier review of mine that Notes on a Scandal, the 2006 psychological drama that scored four Oscar nominations, has a child actor with Down syndrome in the cast. Penny said:

Child actors with Down syndrome occasionally have small roles in films where their visible difference is not much commented upon, nor does it become a major plot point. I'm thinking of Testament (1983), for example, and last year's Notes on a Scandal. Both smaller, serious dramas, with women in the leading roles--maybe that's no coincidence?

I got a chance to see and write about Testament last weekend, and now I've seen Notes on a Scandal too. Unlike in Testament, where the child with Down does not seem to be used as a signifier of anything else within the plot, I do think Ben, the 12-year-old son of Cate Blanchett's character, Sheba Hart, carries more symbolic meaning than the average nondisabled child in an adult drama. But the story is emotionally and psychologically dense, so he doesn't simply stand for unspoiled innocence, or parental sacrifice, or unruliness, as developmentally disabled folks frequently do in fictional stories. I think Ben, played by Max Lewis, does symbolize all those things, but there are also some great family scenes where I think his presence is fully integrated and normalized in ways rarely seen in film.

Based on the novel by Zoe Heller, which was on the short list for the Man Booker Prize back in 2003, Notes is about two women: the aging, bitterly lonely lesbian history teacher, Barbara Covett, played by the fabulous Judi Dench, and Sheba Hart, the straight, married art teacher who has an affair with a 15-year-old student. The events of the story are narrated as Barbara keeps a journal of her obsessive relationship with Sheba, and she's a captivating and disturbing "unreliable narrator" in the tradition of Holden Caufield or Humbert Humbert. (For full coverage of the movie's complex psychodrama -- complete with spoilers -- check out this review at Blogcritics.)

Upon meeting Sheba's family -- her much older husband, teenage daughter and Ben -- Barbara caustically refers to the children as "a pocket princess" and "a somewhat tiresome court jester." Barbara's desire for Sheba and jealousy of her family life leads her to manipulate events to break Sheba from her family. Her last name isn't "Covett" for nothing.

Two of the film's most dramatic scenes hinge on the role Ben plays in his mother's life. After a tryst with her underage lover, Steven, in her art studio behind the family's London flat, Sheba first waxes nostalgic about a Siouxie and the Banshees' album Steven sees. When he then picks up a wizard's hat Sheba is making for Ben's upcoming school play and jokes about such a childish thing being for a 12-year-old, Sheba tells him her son has Down syndrome. It's a sobering moment for the characters, filled with complex subtext: she hadn't told Steven about her son's disability, Steven is the picture of boyish youthful perfection, she's long past her carefree punk rocker days, Ben represents her life's realities.

In another scene, a grief-stricken Barbara has just left her beloved cat at the local vet to be euthanized when she flags down a car loaded with the Hart family on their way to Ben's school play. On the sidewalk, Barbara demands Sheba stay with her and abandon her family plans, suggesting she will reveal Sheba's illegal and adulterous behavior if she doesn't get her way. The choice would be wrenching without it involving a developmentally disabled child, but Ben is used specifically to ratchet up that effect (very similar to the blackmailing of the father of a very ill daughter in Derailed, by the way).

I mentioned that developmental disability in fiction often symbolizes an unruliness in life. A classic example is Lennie in Steinbeck's novella Of Mice and Men, where the developmentally disabled man accidentally kills animals and a woman with uncontrolled physical strength. In Notes, I think the unruliness Ben represents is equal parts adult disenchantment with life's realities and joyous familial free-spiritedness. Sheba, describing to Barbara how she fell into the affair with Steven, says:

This is going to sound silly, but something in me felt... entitled. You know, I've been up to my head all my life, a decent wife, a dutiful mother coping with Ben. This voice inside me kept saying "why shouldn't you be bad, why shouldn't you transgress? I mean, you've earned the right."

And on disenchantment more generally:

My father always used to say... you know, on the tube...? "Mind the gap." ....It's just the distance between life as you... dream it and... life as it is.

Again, any family with all it's adult obligations would serve to illustrate this, but Ben is used to intensify the effect. This may not be an inaccurate portrayal, but it does seem to be the main or sole dynamic signified by children with developmental disabilities (physical ones, too) in fiction.

Yet I think Ben offers more complexity than that, even on the theme of unruliness. Barbara is attracted to Sheba's bohemian artsy-ness and describes her as "different" from her other colleagues at school. They first meet when Barbara steps in to help Sheba with an altercation between two students -- an unruliness Sheba cannot manage on her own. In thanks, Sheba invites Barbara to lunch with her family, where Barbara finds herself observing casual family intimacy that includes a ritual after-lunch family dance. Young Ben is a key part of this free-spirited unruliness, the happy abandon of family togetherness that best reveals the loving connections Sheba endangers with her affair and Barbara threatens with her jealousy.

Penny wondered, in her comment quoted above, if "both smaller, serious dramas, with women in the leading roles--maybe that's no coincidence?" I don't think it is a coincidence that films centered on women's stories seem to portray parenting of children with Down syndrome more realistically than we've historically seen. (Take that observation for what it's worth -- I'm a student of disability in fiction but I'm not a parent and don't currently spend any time with children with developmental disabilities.) But I also think that the portrayal of these children, in Testament and Notes, by children who actually have disabilities is a function of the roles being small and not competitive roles for established actors. Adult developmentally disabled characters are typically played by nondisabled actors because some well-known star gains prestige from the role.

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