Patricia E. Bauer

I've moved ...

2007-08-24T08:49:00.000-04:00

Please visit me in my new space, www.patriciaEbauer.com, where you'll find a more complete listing of my posts. Thank you.

Stand Tall

2007-08-23T11:03:00.000-04:00

Note: for a more complete list of my posts, please visit my new site at www.patriciaebauer.com --

Please also see my related post "Tell them it's not so bad" at: http://www.patriciaebauer.com/2007/10/02/tell-them-its-not-so-bad

Text of my keynote speech about routine prenatal screening

delivered at the 35th annual convention

of the National Down Syndrome Congress

Kansas City, Missouri

Sunday, August 5, 2007

Long ago, my husband and I thought we had the world figured out. We had good educations, good jobs, nice offices, even preferential parking spaces. We thought we had it made.

Then, a little more than 23 years ago, Margaret showed up, providing us with the most important learning experience of our lives. Our first order of business was trying to figure out this whole Down syndrome thing, of course, but ultimately it dawned on us that the effect of an extra chromosome here or there was the least of what we needed to learn. Over time, we came to reevaluate our core values, and to understand that much of what we had been led to believe – about what makes a family happy, what makes a life worthwhile — was misguided.

I’m sure I’m not alone in saying that for the first few years of Margaret’s life we worked very, very hard to do everything we could to help Margaret become “normal.” It was only later that we realized what most families get to eventually: that “normal” wasn’t the point. Our real goal was to help Margaret be Margaret. It was only by letting go of the concept of normal that we were able to see our daughter as the delightful person that she truly is, not obscured by some burdensome word, some arbitrary social ideal that had nothing to do with any of us.

Like it or not, though, we have to admit that we as a nation have been sold this concept of “normal,” and we’ve fallen for it. Somehow, while the disability community was out of the room, the world of medicine established a diagnosable standard called “normal” and now we’re all trying as hard as we can to achieve it.

Starting this year, it is recommended by the professional organizations representing obstetricians and gynecologists in the United States and Canada that all pregnant women be offered prenatal screening for Down syndrome. All pregnant women. Prenatal screening tests are now well on their way to being standard of care. Insurance companies are covering them. And since Down syndrome is not a condition that can be repaired in utero, it must be fairly assumed that the purpose of this testing is to allow – and urge — women to terminate their pregnancies, which is in fact what has been happening about 90 percent of the time when Down syndrome is diagnosed prenatally.

Let me just underscore that, to make sure we’re all on the same page. Studies have shown that nine out of ten pregnancies in which there is a prenatal diagnosis of Down syndrome end in termination.

This is a painful topic to talk about, I recognize, and it’s made more painful by the very ironic fact that these recommendations have come at a time when people with disabilities have more legal protections than ever before.

Not only that, people with Down syndrome are in general healthier and having a better quality of life than at any time in history. This is the first generation to benefit from early intervention, inclusion, improved health care and better educational opportunities, and they are blowing up yesterday’s old data. Increasingly, they’re completing high school, getting jobs, living more independently. Some are driving; some are getting married. Imagine: I met a woman with Down syndrome the other day who was part of a relay team that swam the English Channel. These are people who are living full lives and making contributions to their communities.

We laugh at our house every time we see some article in the media about how people are “suffering” from Down syndrome. Margaret, my daughter, has just moved into her own apartment with a couple of her girlfriends. She’s sure not suffering. And just the other day, self-advocate Audrey Wagnon delivered the same message in her speech to the full NDSC convention. Here’s how she said it: “I’m having the best life ever!”

But – oddly — we live in a time in history in which the faces of our loved ones have come to symbolize something in the public mind that is very much at odds with our life experience. People see our family members and think what they’ve been taught to think. They think our children are tragedies. Yet we who are privileged to live with them know that, despite some of the frustrations of day-to-day existence, our lives are also filled with possibility and love and joy.

So why the disconnect between our lives and society’s vision of them? Perhaps we should start by acknowledging the obvious: prejudices, biases and fears of disability run deep in our society, nourished by years of history and reinforced among other things by ignorance, gaps in the healthcare and educational systems and negative media images.

Physicians tell me that women want prenatal screens because they are very fearful of having a child with a disability.

Among other things, they fear that the financial burden would crush them or that they wouldn’t be able to get a decent education for their child. They’re afraid, too, that they would be held accountable for having a child with a disability, and that there would be people who would blame them for failing to prevent the birth of such a child. They are afraid of stigma and ridicule. Sadly, these are not unreasonable fears.

But that’s only one piece of the puzzle we face. Here are few more:

– Puzzle piece number two. Prospective parents are suing their doctors if they don’t get a so-called “perfect baby,” leading to skyrocketing insurance costs and doctors who want to run every test possible to prevent litigation. Not long ago, a Florida jury awarded a couple more than $20 million because their doctor failed to warn them that their son would be born with a genetic syndrome.

– Puzzle piece number three. Physicians, nurses and other health care providers are giving their patients negative, outdated, biased or incomplete information about Down syndrome, depriving them of the ability to make their own informed choices based on accurate information instead of negative stereotypes.

– Puzzle piece number four. Financial demands on doctors mean they have to process more and more patients in less and less time, giving them scant opportunity to discuss tests and deliver diagnoses in a sensitive, thoughtful compassionate way. Women are reporting that these rushed interactions feel coercive.

– Puzzle piece number five. Medical schools don’t offer clinical training about people with intellectual disabilities.

– Which brings us to puzzle piece number six. Let’s not forget that prenatal diagnostics is a profitable industry, in which hundreds of millions of dollars are spent each year. A substantial portion of that cash flow swells the accounts of the obstetricians and gynecologists who see pregnant women. By contrast, I should point out, the amount of money spent on research into treatments and processes to improve the lives of people with Down syndrome is minimal at best.

All these factors, I’m sorry to say, have combined to create an atmosphere in which there is a growing presumption that pregnant women should be tested for Down syndrome – a presumption, stoked by ignorance and stereotypes, that children like ours are expendable, that children like ours are without value, and that children like ours impose an unwanted cost on society. Somehow, without our knowledge or participation, a cost-benefit analysis has been applied to our children and they aren’t measuring up.

You may be wondering: How did we ever get to this point?

For the purposes of this conversation, let’s start back in the ‘50s. Most of you won’t remember it, but people with disabilities then had not been granted the right to go to public school. Doctors didn’t think that people with intellectual disabilities were capable of learning, and routinely recommended that they be sent away to institutions. During the ’50s in this country, an estimated half a million children were institutionalized, often under the most abusive and degrading conditions.

So when a French geneticist named Jerome Lejeune discovered the extra 21st chromosome that causes Down syndrome in the late 50s, his discovery caused many to hope that treatments would soon be found. As you of course know, that didn’t happen. A far more straightforward task, from a scientific point of view, was the development of tests that could be used for prenatal testing and screening. Those tests really took off after abortion was legalized in 1973.

Doctors and scientists took a public role in recasting the definition of healthy fetuses and legitimate abortions, and what were called “therapeutic” abortions came to be regarded as a legitimate and desirable way to prevent or eliminate Down syndrome. It was in some ways just an accident of history that these so-called therapeutic abortions became well entrenched before our society was able to see what individuals with Down syndrome, given a chance, could do.

It is, as author Michael Berube has written, a bitter paradox: even though we have barely begun to explore the ways in which we could include people with disabilities in our society, we are devoting precious time and resources to developing better ways of spotting and eliminating these people before they are born.

Particularly troubling is the fact that this shift – to preventing Down syndrome by attempting to prevent the births of children who have it – was largely engineered by members of the healing professions, the very people who are charged with the responsibility of protecting vulnerable populations.

So now we are left with a harsh reality indeed. The implicit message the American College of Obstetricians & Gynecologists seems to be sending is this: even though racial, cultural and ethnic diversity are valued and supported in our society, genetic diversity is not. It seems that it’s more important to be “normal” than to be “human.” Or maybe we should view this as less a philosophical discussion than a pragmatic one. For OB/GYN’s, it’s better for business to deliver only babies that the medical profession calls “good outcomes.”

Somehow, along the way, the professional organization representing these doctors has failed to notice that they have embarked upon the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.

I know we empathize with today’s young parents. Their finances are limited. They have grown up in an era of fear, taught to be afraid of strangers and wary of the strange. In the obstetrician’s office they trade their fears for the illusion of control — but in the process they are giving away much of what defines America at its best: a society that assumes responsibility for those who are vulnerable, a society that accepts those who are different, a society marked by generosity, liberty and freedom of thought.

These may sound like abstract concepts, but they’re not. The consequences of all these uninformed individual decisions, made in the privacy of the obstetrician’s office, are being played out before our eyes every day. We see them when our family members are the subject of unwanted stares. When people talk about how someone “had” to get rid of a pregnancy because it wasn’t perfect. When people tell us that special ed kids “cost too much.” When people ask us, sometimes in ways that seem unfriendly, whether we had “the test.” Or even why we didn’t have “the test.” When medical professionals look at our beloved children and say “that shouldn’t have happened.”

Let’s face it: people with Down syndrome have a catastrophic PR problem. The doom and gloom talk has gone largely unchallenged for far too long.

It gives me great pain to tell you all this, because I know you love your family members as much as my husband and my son and I love Margaret. I know, too, that you share our vision that people with Down syndrome are valued, contributing and vibrant members of our families and our communities.

We come together at reunions like these to affirm the value of our family members’ lives, secure in the knowledge that their extra chromosome is NOT the most important thing about them. They belong; they dream big dreams; they contribute; they deserve respect. What makes their lives difficult is not their genetic makeup; it’s the uninformed attitudes of others.

We know this, of course, but it’s not enough for us to share the message with one another. We need to put it out where all the world can see.

Let’s start with what we can do as individuals. As I’ve gone around the conference, I’ve heard about some great things that people are doing in their own communities. Things like:

–Helping to educate the doctors and genetic counselors in their area by visiting their classes or professional meetings.

–Building relationships with hospitals, and talking with families who have a fresh diagnosis.

– Monitoring their local news media, and holding them accountable for their coverage and their use of language about people with disabilities.

These are great steps, but let’s not stop there. Let’s dream even bigger.

It’s time for us to insist that our organizations advocate forcefully on behalf of people with Down syndrome in ways that are targeted to reach decision-makers, to reach medical professionals, and of course to reach the general public. Here are some of the things we need to do.

1. We need to provide disability awareness training and accurate information directly to obstetricians, to gynecologists, and to the professionals who assist them. They need to hear the nuanced, compassionate message that is at the core of diversity and human rights: all people have value and dignity and are worthy of celebration. We’ve told them this nicely. Now perhaps it’s time to turn up the volume.

2. We need to put out lots and lots of well-designed materials that will teach doctors how to discuss prenatal screening and diagnoses with their patients. Senators Kennedy and Brownback have recently reintroduced their bill on this topic. Whether it’s this bill or another one, we need to find a way for doctors to get the materials they need.

3. We need to improve medical school curriculums, which include almost nothing about children with disabilities.

4. We need to hold publishers accountable for the editorial content of their pregnancy handbooks. Take a look in your local bookstore, and notice what those books say about our young people. If they carry anything at all, it’s more than likely a cold, clinical list of symptoms and diagnoses, guaranteed to strike fear in the heart of any pregnant woman. We must change this.

5. We need to use technology to convey our message. Where does your average 20-or 30-something look for medical information? Right. The Internet. If we truly want to help people make informed decisions, we need to get involved in the Internet in a big way, both in print and in video. Our content needs to be useful and modern.

6. We need to enable prospective parents to see that people with disabilities live good lives, and that they have warm, sustaining relationships with their families and friends. Presently, that information is only coming to them anecdotally, if at all. Imagine how different things would be if people could be referred to a website that allowed them to click on videos that would show them footage of people with Down syndrome, of all ages and ability levels, going through their daily lives. America’s teenagers are communicating actively through Youtube – why shouldn’t we?

7. We need to speak up to challenge the old stereotypes about our family members and ourselves. We’re not victims. We’re not heroes. We’re just ordinary people sharing slightly extraordinary lives with people we love and who love us.

I talked earlier about people who sometimes ask us about whether we had “the test.” Here’s what I think they really want to know. Did you, or would you, choose this person to be in your family? Let me tell you my answer to that question.

When my husband and I decided to have children, we were kids. (Okay, we were in our early 30s. But viewed from a distance, that sure looks young now!) Sure, we had lots of education, degrees and experiences, but there was a lot we didn’t know:

– We didn’t know what it meant to be a parent.

– We didn’t know that there was no such a thing as normal.

– And we sure didn’t know that that it was possible to have a happy, thriving, loving family with a child who was not the same as everybody else’s.

Fortunately for us, we have learned a thing or two at the University of Margaret since then. We learned

– No child is “normal” — and neither are we;

– We, like all parents, need to get over the notion of our children meeting some arbitrary standards of perfection that we couldn’t possibly achieve ourselves; and

– We choose our children, and each other, over and over, every day of our lives.

In short, my husband and I have been privileged to share our lives with someone who is a constant reminder of some essential truths: the importance of family, the strength of unconditional love, the dignity and value of vulnerable people, and the fact that IQ points are not a good predictor of personal happiness or quality of life.

As we all ponder how to carry these messages to the outside world, as we get ready to leave the safe haven of our reunion today, let’s remember that we are all stronger together than we are separately.

But talking among ourselves, while important, won’t get the message out. We have to communicate directly with those not in this room.

A couple of years ago, a newspaper running a piece I’d written asked for a family photo, including Margaret. I gulped, feeling exposed, and called my husband to ask his thoughts. He said, “Stand tall; run the picture.” We did.

That is my message to all of us: Stand tall; get out the message.

People will listen.

We can do it.

Together.

'Life is far from ordinary for these kids'

2007-08-21T14:12:00.001-04:00

[I've moved! For a more complete listing of my posts, please see
my new website at: www.patriciaebauer.com. -- pb]

Teens talk candidly about growing up with a sibling who has special needs.

Twenty teenagers and young adults in the Minneapolis area have teamed up to produce a book about growing up in households with a sibling with special needs. “”Who Asked Me: A Journal of Discovery and Sharing By and For Siblings of People with Developmental Disabilities” is an attempt to present their lives honestly, from their own point of view. Among the topics covered are admiration for their siblings, impatience with people who use the word “retard,” embarrassment, and worries about adult responsibilities.

Mostly … the siblings wrote about love, complicated though it may be. The teens … agreed that their lives have been enriched, not cheated, by having these siblings.

One lovely example: “My brother,” wrote Tess Hayes, 14, whose older brother Brett has Ring 22 syndrome, “is an inspiration not only to me, but to every individual that has the amazing chance to meet him. I just hope that I, too, might one day live life as fully as my brother does, for that is truly a gift.”

The book is available here. Tips on strengthening sibling relationships are here.

From the Minneapolis Star-Tribune.

'Heroic teen fought for life to the end'

2007-08-21T13:50:00.000-04:00

Detroit News columnist Laura Berman contributes a thoughtful, sensitive portrait of Miles Levin, a funny forgetful teenager whose cancer diagnosis spurred him to develop into a conscientious student and a writer with an international following. By the time of his death this week, Miles’ messages of life and hope on a hospital blog had enlisted regular readers from around the world.

His passion for life was matched only by his insistence that it be a good life, a meaningful one. What the world most needs, he said in his last days, is “more kindness.”

… He tried to think of cancer as a gift. “I am living more richly than I ever was before cancer, so if I die, will it have been worth it just to get these years of superliving?” he asked at one point.

Miles’ website at William Beaumont hospital is here. Registration required.

'Some parents say special education is too easy on students'

2007-08-21T13:02:00.001-04:00

‘Parents say schools game system, let kids graduate without skills’

Writing in the Wall Street Journal, John Hechinger and Daniel Golden give weight to parent arguments that special education students are being passed through without mastering academic material. Hechinger and Golden track lawsuits claiming that special education programs are undermining academic standards by giving students with disabilities a free ride. The resulting story, the latest in a continuing series by the Journal, assumes the newspaper’s usual skeptical view of the value of special education programs.

In attempting to document the collision of the nation’s special education programs with academic standards and graduation requirements, the reporters find conflicting regulations, poor communication, and lots of hard feelings among teachers, administrators, regulators and parents.

The story is worth your time, although readers should be warned that the conflict it describes is a fundamental and thorny one that has been developing since the Individuals with Disabilities Education Act was passed more than 30 years ago. It defies easy solutions.

Sadly, scant attention is given here to the role that could be played by the effective use of each student’s federally-mandated Individualized Education Plan (IEP). IEPs should be designed to challenge each individual student and should be used as the standard against which to measure student achievement.

Instead, underlying the story seems to be the impossible expectation that children with disabilities should be performing at the same academic level as their peers without disabilities, a goal which the reporters say is the result of the 2001 No Child Left Behind Act. That law requires that children with disabilities take the same tests as do other students.

There is plenty of blame to go around here. An attorney reports that school districts are passing special education students to avoide being blamed for not providing the right services if students faile. Teachers say they have tried to fail students who didn’t make an effort or skipped class, only to have administrators insist on passing grades. Parents report that students received standard diplomas without being able to demonstrate adequate language or math skills.

It appears that a fundamental, and neglected, aspect of the dispute may center around the terminology used in grades and diplomas. Many states require all students to earn the same kind of diploma, creating anxieties in families where students are not performing at typical levels on tests. Policies on grading are similarly divided.

One wonders whether a separate grading structure for students with IEPs would allow teachers to more accurately measure student progress against their IEP rather than against standards that have been developed for students without disabiities. Such grades, with a notation indicating an adapted curriculum, would give a more accurate view of student work as well as providing motivation for achievement, but would not provide inflated transcripts for college applications or feed unreasonable parental expectations.

From the Wall Street Journal. Registration required. See also the Journal’s listing of all its stories on what it calls “mainstreaming” and others refer to as “full inclusion.”

Not all my sons

2007-08-19T20:44:00.000-04:00

Arthur Miller’s missing act

From Vanity Fair, a powerful and well-written article that examines the tragedy of one father’s refusal to accept his son’s disability. Upon his death two years ago, playwright Arthur Miller was extolled as America’s moral compass, a champion of personal responsibility. Yet Miller’s personal life was at odds with his literary reputation. When his son Daniel was born with Down syndrome in the 1960s, Miller sent him to an institution, cut him out of his life and never acknowledged him publicly. Friends said the playwright never visited with his son until the years preceding Miller’s death.

Contributing editor Suzanna Andrews attempts to understand Miller’s actions and explain them within the context of the day. At the time of Daniel’s birth, it was common for doctors to recommend that children with Down syndrome be institutionalized, although many parents were disregarding such advice.

Andrews tracks down Daniel Miller and describes the hellish conditions in the institutions in which he grew up, where children were warehoused without supervision and tied to chairs if they misbehaved. She describes Daniel as an engaging and personable man who has a job, a huge network of friends, and a passion for disability advocacy work, despite the fact that he did not receive a formal education. Upon the death of his father Daniel was granted a quarter of his father’s estate. Still, he never enjoyed a father-son relationship with the man who authored “All My Sons” and “Death of a Salesman.”

It would be easy to judge Arthur Miller harshly, and some do. For them, he was a hypocrite, a weak and narcissistic man who used the press and the power of his celebrity to perpetuate a cruel lie. But Miller’s behavior also raises more complicated questions about the relationship between his life and his art. A writer, used to being in control of narratives, Miller excised a central character who didn’t fit the plot of his life as he wanted it to be. Whether he was motivated by shame, selfishness, or fear—or, more likely, all three—Miller’s failure to tackle the truth created a hole in the heart of his story. What that cost him as a writer is hard to say now, but he never wrote anything approaching greatness after Daniel’s birth. One wonders if, in his relationship with Daniel, Miller was sitting on his greatest unwritten play.

Today, Daniel Miller lives with the elderly couple who have long taken care of him, in a sprawling addition to their home that was built especially for him. He continues to receive daily visits from a state social worker, whom he’s known for years. Although his father left him enough money to provide for everything he needs, Daniel has kept his job, which he loves and “is very proud of,” according to Rebecca, [Miller Day-Lewis, his sister] who visits him with her family on holidays and during the summers. “Danny is very much part of our family,” she said, and “leads a very active, happy life, surrounded by people who love him.”

Some wonder why Arthur Miller, with all his wealth, waited until death to share it with his son. Had he done so sooner, Daniel could have afforded private care and a good education. But those who know Daniel say that this is not how he would feel. “He doesn’t have a bitter bone in his body,” says [disability rights advocate] Bowen. The important part of the story, she says, is that Danny transcended his father’s failures: “He’s made a life for himself; he is deeply valued and very, very loved. What a loss for Arthur Miller that he couldn’t see how extraordinary his son is.” It was a loss that Arthur Miller may have understood better than he let on. “A character,” he wrote in Timebends, “is defined by the kinds of challenges he cannot walk away from. And by those he has walked away from that cause him remorse.”

I'm moving ....

2007-08-06T18:30:00.001-04:00

... to www.patriciaebauer.com

Please visit me in my new space!

Travel plans

2007-08-04T07:04:00.001-04:00

I'm off in Kansas City to deliver a keynote address at the annual convention of the National Down Syndrome Congress. Back Monday.

Real jobs for real people

2007-08-02T08:32:00.000-04:00

The Wall Street Journal runs an extended feature on an employment program at Walgreen’s for people with disabilities.

The headline: “Erasing ‘Un’ from “Unemployable’: Walgreen program trains the disabled to take on regular wage-paying jobs”

Highlighted is 18-year-old Harrison Mullinax, who has autism.

“Mr. Mullinax works eight hours a day at a new Walgreen Co. distribution center, where he wields a bar-code scanner, checking in boxes of merchandise bound for the company’s drugstores. From his paycheck, he tithes to his church and sometimes treats his mother to dinner at Kenny’s, a local buffet restaurant. ‘It answered a prayer,’ says Mr. Mullinax’s mother….”

The distribution center employs 264 people, more than 40 percent of whom have various disabilities, and is 20 percent more efficient than the company’s older facilities.

“… an innovative program at the distribution center [in Anderson, S.C.] is offering jobs to people with mental and physical disabilities of a nature that has frequently deemed them ‘unemployable,’ while saving Walgreen money through automation.”

” … executives at Walgreen and the social-services agencies working with it believe the company’s program has a larger number of disabled employees, doing more-sophisticated work, than is typically available to people with mental and physical challenges. “

Paid registration required to view WSJ story.

Reaction to "Where's Molly?"

2007-08-02T07:56:00.000-04:00

Blogger Kay Olson, who describes herself as a “thirtysomething disabled feminist,” reacts to “Where’s Molly?” in a guest essay on the CNN site. She says the widespread acceptance of institutionalization in years past is a tragedy that continues to stigmatize people with developmental disabilities today.

” … we’re still living with the legacy of those folks being segregated, made invisible, and devalued. It has impacted how we view developmental disability and the way we think of difference - we have all been taught implicitly by this history that people who are intellectually or developmentally different do not belong among us because they’re dangerous, completely incompetent and lack any ability to contribute to society. And those beliefs are not true.”

The tragedy is exacerbated, she says, by the fact that abortion was legalized before people with disabilities were able to be fully integrated into the community. As a result, she says,

“… fear and stigma are a bigger part of [reproductive] choice than they might otherwise be if acceptance and providing community resources and integration were a bigger part of our social history instead.”

2007-08-02T07:28:00.001-04:00

Molly and Jeff Daly

From a new documentary featured on CNN:

In 1957, when Jeff Daly was 6 years old, his 2-year-old sister suddenly disappeared from his family.

For nearly 50 years, Jeff and his family lived their lives as if his sister had never existed.

One day, after both his parents had died, Jeff found the answer to the question he wasn't supposed to ask

Following records his father had kept, Jeff Daly learned that his parents had sent Molly to a state institution for the "feeble-minded" in Oregon shortly before her third birthday. He searched for her, built a new life that includes her, and then lobbied for a change in Oregon law that now makes it easier for families to locate people who had been institutionalized.

Now Daly has made a documentary film that explores his family's journey. "Where's Molly?" opens a window on the practice that led to the institutionalization of an estimated half a million children with disabilities in the '50s alone. More on the film can be found here and here.

CNN explores the history and significance of institutionalization in the 1950s and 60s, and traces the legacy of stigma and shame that is still felt today.

A new perspective on prenatal screening

2007-08-02T06:21:00.001-04:00

Writing in Canada’s professional journal of obstetrics, representatives of the Canadian Down Syndrome Society raise strong questions about the ethical implications of recent recommendations that all pregnant women be offered prenatal screening for Down syndrome.

“Our vision is of a proud Canada where all are welcome, where diversity is embraced, and where everyone’s genes are valued equally.”

CDSS vice-chair Rhonda Grant and executive director Krista Flint define Down syndrome as “a naturally occurring chromosomal arrangement that has always been part of the human condition.”

They maintain that social constructs and belief systems have aligned to cause perceptions that DS is a birth defect or an illness, a perception they say is flawed. They draw parallels between Down syndrome screening and prenatal sex selection, saying both practices are rooted in cultural biases that cause inequitable treatment and reduced quality of life for the targeted group.

Among their recommendations:

Professional education for physicians and health care providers about the reality of lives lived with Down syndrome.

A broad-based effort to provide accurate and balanced information to pregnant women, both about DS specifically and also about the realities of life with a disability.

The use of value-neutral language by doctors in discussing Down syndrome with patients.

A comprehensive plan to put prospective parents in contact with support groups or other knowledgeable parties.

Grant and Flint note that two members of the organization’s 11-member board have Down syndrome, as do twelve members of a board advisory committee. They describe the advisory board members as “university students, entrepreneurs, artists, employees and spouses who share our concerns about the new recommendations from the Society of Obstetricians and Gynaecologists of Canada (SOGC) and the implications of those recommendations for them and other people with disabilities.”

The letter is published in the July issue of the Journal of Obstetrics and Gynaecology Canada (JOGC), Canada’s peer-reviewed journal of obstetrics, gynecology, and women’s health.

A prenatal screening story with a difference

2007-08-01T14:01:00.000-04:00

Click here to see a thoughtful, nuanced piece about prenatal screening by reporter Amelia Santaniello of CBS affiliate WCCO in Minneapolis. It avoids the old stereotypes and buzzwords, talks about what people with Down syndrome can achieve, and encourages expectant parents to learn more about the lives of people with DS and their families.

Law day in disability world

2007-08-01T13:55:00.001-04:00

* Subway settles with the Justice Department in an accessibility case. Subway will have to renovate its 20,000 restaurants to make them accessible to people with disabilities. The company had been charged with violating the ADA.

* The Justice Department has launched a wide-ranging investigation of New York’s transit authority for “allegedly violating federal laws meant to help wheelchair-bound commuters get around underground,” reports the New York Post.

* A San Francisco surgeon is charged with hastening the death of a patient with disabilities in order to harvest his organs for transplant. Hootan Roozrokh is facing three felony charges in connection with the death of Ruben Navarro of San Luis Obispo. Roozrokh’s attorney says his client is the subject of a witch hunt.

* Six Medicaid patients sue the state of Florida to try to block cuts to in-home services for the developmentally disabled that are scheduled to begin on Wednesday.

* Parent feud divides Special Olympics organization in Texas. The Dallas Morning News shows us the documents.

Tories seek to end inclusion of students with disabilities

2007-08-01T11:46:00.000-04:00

Britain’s Conservative Party wants to see an end to the government’s policy of including children with special needs in mainstream schools, a party working group has recommended. Officials said children should be returned to “special schools” to restore parent confidence and provide better service to vulnerable students.

Said Sir Bob Balchin, the committee’s chair:

“The government’s policy of ‘inclusion’ - closing special schools and sending large numbers of children with special education needs to mainstream schools - has caused great distress.

“This is why we need to recreate many more special school places. Many parents of special needs children have lost confidence in the statementing process and our policies aim to put this right.”

Epilepsy zeitgeist

2007-08-01T07:45:00.000-04:00

The number of Google hits for the search "Roberts, epilepsy" as of 7:45 a.m. Eastern: 1,733.

Some examples:

Roberts facing medical option on 2nd seizure:
"... he and his doctors will have to decide whether he should take medications to prevent further seizures ... the drugs can have troubling side effects, including drowsiness or insomnia, weight loss or weight gain, skin rashes, irritability, mental slowing and forgetfulness. "
Experts split on whether Chief Justice Roberts has epilepsy:
Doctors "were divided on whether the seizure -- the second one the 52-year-old jurist has suffered in 14 years -- is a sign that Roberts has epilepsy, a neurological condition that could require him to take anti-seizure medication to control the disorder."
Does Justice Roberts have epilepsy?
"When Chief Justice John Roberts experienced the second seizure of his life on Monday, he may have become, in medical terms, an epileptic ... The diagnosis of epilepsy, say experts, may not necessarily mean that Roberts will have to take anti-seizure medication, which can control the electrical activity of the brain, or have to be concerned that future events will impair his ability to function on the Supreme Court."

Special education's Hager steps down

2007-07-31T17:26:00.003-04:00

John H. Hager, the assistant secretary who headed the office of special education and rehabilitative services at the federal Department of Education, has resigned to become chairman of the Virginia Republican State Central Committee, writes Education Week. Hager, a former lieutenant governor of Virginia, had occupied the position since 2004.

Under construction

2007-07-31T11:11:00.001-04:00

A word to the wise: we're in the process of moving to a new website. With luck, the change will be completed soon. In the meantime, some links to old blog posts may not respond as expected. Your patience is appreciated.

From the in-box

2007-07-31T07:02:00.001-04:00

John and Jane Roberts at his swearing-in ceremony in 2005 (AP Photo)

-- Doctors have started using the word "epilepsy" in connection with Chief Justice John G. Roberts Jr. , who stayed overnight in a hospital in Maine after experiencing a seizure on Monday. The seizure was similar to one he experienced 14 years ago, according to a court press release.

-- Parents of children with disabilities send a few choice words in response to a recent Wall Street Journal story on special ed -- words like "union thugs" and "overpaid fat-cat administrators."

-- Researchers find a link between pesticide exposure and autism, but caution that it's too early to draw conclusions.

-- Reviewing the new reality series "Flipping Out," Ginia Bellafonte says the show at last sets the record straight on obsessive compulsive disorder.

"For years now, the comic detective series “Monk” has equated O.C.D. with intuitive brilliance. We’ve long required a corrective interpretation, and “Flipping Out” is it. Mr. Lewis isn’t a genius of anything. He’s just a delusional jerk."

-- A growing number of professionals are prescribing a new treatment to patients with depression and anxiety. They call it "bibliotherapy." In lay language, that means: read a self-help book.

MS discovery sparks predictable treatment hopes

2007-07-30T16:04:00.000-04:00

Scientists reporting in the New England Journal of Medicine report that three genes will offer new understanding to multiple sclerosis and may lead to new treatments. Skeptics among us will be forgiven for remembering that scientists had the same idea half a century ago, after French geneticist Jerome Lejeune identified the triple 21st chromosome in Trisomy 21 (Down syndrome). And have new treatments for Down syndrome materialized? Nope. There are, however, lots of very profitable prenatal screens and tests that are widely used to prevent the births of infants with Down syndrome.

Autism: Random? Or mom?

2007-07-30T15:39:00.001-04:00

So does autism occur randomly? Or can it be traced genetically to mom? Two publications report two different views of an autism study from Cold Spring Harbor Laboratory.

Scientific American reports the scientists came up with a new genetic model for autism that divides families into two groups: those with a low likelihood of children with autism, and those with a higher likelihood.

"The team determined that most cases of autism arise from novel, spontaneous mutations passed down from one or both parents, resulting in large gaps in a person's genome often encompassing several genes, which are then disrupted or inactivated."

[Why those spontaneous mutations might be occurring at an estimated rate of one in every 150 children was not discussed.]

Newsday pointed instead at mom's role in conveying autism.

"What Wigler and his team found is a previously unrecognized pattern: Mothers, they say, acquire genetic mutations spontaneously that are specific to autism, which can be passed to their children. The mothers do not themselves exhibit traits of the disorder, but they have a 50 percent chance of transmitting the trait."

Once again, those refrigerator moms can't win.

Vouchers for kids with disabilities? Proceed with caution.

2007-07-30T15:16:00.000-04:00

Yet another gee-whiz story today about the new law in Georgia that will provide vouchers to students with disabilities. The law has been promoted as a ticket out for families who want to escape their local schools, but little has been written about the law's weaknesses. Among them: private schools that aren't obligated to provide adequate curriculum or teaching for kids; stipends that won't cover the cost of private schools; and a real possibility that kids will be disconnected from their communities in segregated "special" schools. For some more realistic talk on the subject, see this earlier piece that cautions: let the buyer beware.

A little housekeeping

2007-07-30T15:08:00.000-04:00

When the National Down Syndrome Congress meets in Kansas City this weekend for its annual confab, I'll be there. Look for me on Sunday, when I'll be giving a keynote address and a workshop on disability coverage in the media.

"My lovely son, the Hollywood star"

2007-07-30T12:12:00.001-04:00

Max Lewis and his mother, Sandy.
Max was featured in "Notes on a Scandal." (Daily Mail photo)

Here's a refreshing first-person article by Sandy Lewis in the (UK) Daily Mail. Sandy's 13-year-old son Max played opposite Cate Blanchett in "Notes on a Scandal," recently released on DVD. Sandy documents her personal journey, starting with the emotional story of her son's Down syndrome diagnosis and ending with his successful star turn in Hollywood.

Along the way, Sandy learns to ignore the negative predictions of "professionals" and instead to focus on the many strenths of her son, a gifted performer whose smile can light up a room. She has harsh words for the nurse who counseled her to institutionalize her baby, and for the parents who complained when they found their children shared a classroom with Max. She's looking forward to a bright acting future for Max, who is eagerly seeking roles that are written for "a boy with lots of talent."

Thisislondon.co.uk has another story on Max. Key quote: he likes acting "because I'm brilliant at it." For more information about actors with Down syndrome, go to www.dsiam.org, an online service based in Los Angeles.

Is the workplace discriminating against parents?

2007-07-29T13:10:00.000-04:00

Back in the day when my children were tiny, I worked 60-hour weeks as a senior editor at the LA Times Magazine. I depended heavily on the kindness of babysitters and preschool teachers, but the wheels pretty much stayed on the bus until Margaret was diagnosed with leukemia.

After that, it quickly became clear that my husband and I couldn’t manage two kids (one with both an intellectual disability and a chronic life-threatening illness) AND two high-powered jobs. If our family was going to survive, one of the jobs had to go. I left the Times -- a great loss for me, but one that seemed unavoidable.

Now that almost 20 years have passed, I often wonder whether the choices are less stark for parents who find themselves in similar circumstances today. Job or family? Family or job? Do people have to choose?

An in-depth story in today’s New York Times Magazine attempts to answer that question – and I guess I’m not surprised to learn things haven’t changed all that much for families despite the passage of landmark federal legislation. Or rather, things are much the same but a lot more lawyers are involved.

Writer Eyal Press introduces us to a woman who lost her job after her baby was born 16 weeks early, a man who was denied a request for time off to care for his ill wife and child, and a woman who was terminated after requesting a different work schedule so she could attend her son's therapy sessions. He traces lawsuit after lawsuit, discussing the issues in light of the 1993 Family and Medical Leave Act, the 1964 Civil Rights Act and the 1990 Americans with Disabilities Act.

Here’s how the headline frames the debate: “Do workers have a fundamental right to care for the families?” and “The latest front in the job-discrimination battle.”

"Acting normal in a world that thinks you're not" -- on NPR

2007-07-28T13:41:00.000-04:00

This American Life rebroadcasts an hour show called "Special Ed," featuring segments on people "who were told that they're different. Some of them were comfortable with it. Some didn't understand it. And some understood, but didn't like it." You can listen to the program or download the podcast here.

From the promo:

"Ira Glass talks with a bunch of special ed students. By and large, they thought of themselves as regular kids—until each experienced a shocking moment of revelation when they discovered that they were not the same as other kids, and that the other kids already knew that...and had known for a long time."

From one of the interviews:

“You kind of think of yourself as regular until these teachers and people in high authority are telling you you’re not the same as everybody else. So you have to figure out – so okay – why am I different?”

Law grants new rights to European travelers with disabilities

2007-07-27T07:01:00.000-04:00

The BBC reports that a new law passed by the European parliament will improve air travel for people with disabilities. Under the new rules, airlines will no loger be able to refuse to fly people because they have disabilities.

ADA anniversary, continued

2007-07-27T06:43:00.001-04:00

Just 17 years ago, our family was so preoccupied with Margaret's medical and educational needs that we didn't even notice the passage of the ADA. Similarly, any improvements that the ADA may have made to Margaret's life were certainly not obvious to us, as we struggled to get her a decent education in a largely unresponsive local school district.

With luck, this blog will help me catch up on what I missed, about the ADA as well as other disability-related developments. Stay tuned.

Meanwhile, here are a few more documents relating to the act's anniversary.
-- Proclamation from President Bush
-- Statement from Hillary Clinton, pledging to expand economic opportunity for individuals with disabilities
-- Statement from John Edwards, calling for Congress to strengthen the ADA

Diabetic and determined

2007-07-27T05:48:00.000-04:00

Team Type 1 in training. Photo by New York Times

The New York Times reports that athletes with Type 1 diabetes are "blasting out of the starting gate in full force.

"Because of new technology, the emergence of companies that help them manage their illness, the rise of successful role models and sheer determination, they are running marathons, doing 100-mile bike rides, completing Ironmen — many with their doctor’s blessing."

Special education = costly education

2007-07-27T05:31:00.001-04:00

A recent article in Forbes perpetuates the stereotypical view of special education as a benefit program for wealthy parents who sue school districts for costly and unnecessary programs.

"... the explosion in autism diagnoses has been a boon to lawyers who represent parents dissatisfied with the level of education their autistic kids are getting. Usually well-off, these parents don't hesitate to hire a lawyer to seek extra services or private school tuition."

The author recounts stories of million-dollar legal judgments, and suggests that autism diagnoses are booming because savvy parents and lawyers are seeking to profit by working the system. The article, by Mary Ellen Egan, can be purchased here.

Public buys harmful epilepsy "myths": study

2007-07-27T05:06:00.000-04:00

A study from the University College London finds that many people believe potentially harmful myths about epilepsy. A third would put something in the mouth of a person having a seizure to stop them from swallowing their tongue -- but doing so could block their airways. The study authors suggest that the inaccurate depiction of epilepsy in films may be perpetuating these myths, and contributing to negative stereotypes surrounding the disease. From the BBC.

Related story: In a first-person report on National Public Radio, a woman describes the stigma she faced as a child with temporal lobe epilepsy. The stigma didn't end until brain surgery stopped her seizures, she says.

On the 17th anniversary of the ADA ...

2007-07-26T14:20:00.000-04:00

-- From the National Council on Disability: "two reports on the Americans with Disabilities Act (ADA) ... show that ADA implementation is not only possible and practicable, it is also good for business."

-- From Radio Iowa: Democratic Sen. Tom Harkin intends to introduce language to "restore the intent" of the ADA, which he says no longer offers protections to people with epilepsy, diabetes and cancer.

-- From WUSA-TV in Washington, D.C. -- Legal advocates say courts have eroded the rights of people by allowing employers to say a person is too disabled to do the job, but not disabled enough to be protected. Majority Leader Steny Hoyer (D-Md.) and Rep. James Sensenbrenner (R-Wis.) say they will co-sponsor new legislation to restore the ADA to its previous mission.

Disability = Taboo

2007-07-26T14:01:00.001-04:00

TV personality Al Roker recently got in trouble for making jokes about people with epilepsy. Mark Aranoff, writing in the Chronicle of Higher Education, uses the incident to examine why, in his view, disability is the most taboo subject in American culture. Here's his conclusion:

"Taboos reflect the preoccupations of the societies in which they are embedded. Disability will be verbally charged as long as we are preoccupied with the physical and emotional perfection that few of us can aspire to. We will either get over it and accept ourselves, as the Dove soap campaign for real beauty exhorts us to, or, in a future more reminiscent of another Woody Allen movie, Sleeper, we will have plastic surgery and Prozac for all, greeting more-serious disabilities with an exceedingly awkward silence."

Mark Aronoff is a professor of linguistics and associate provost at the State University of New York at Stony Brook.

Democrats shift policy on abortion

2007-07-26T13:47:00.001-04:00

Stephanie Simon, writing in the Los Angeles Times, notes that Democrats in Congress and on the campaign trail are adopting some of the language and policy goals of the antiabortion movement.

"In a striking shift, Democrats in the House last week promoted a grab bag of programs designed not only to prevent unwanted pregnancies, but also to encourage women who do conceive to carry to term.

"The new approach embraces some measures long sought by antiabortion activists. It's designed to appeal to the broad centrist bloc of voters who don't want to criminalize every abortion — yet are troubled by a culture that accepts 1.3 million terminations a year."

The story also notes the return of the Kennedy-Brownback bill, which disappeared in committee in the last session of Congress and was reintroduced last week.

"Liberal stalwart Edward M. Kennedy (D-Mass.) is working with staunch conservative Sam Brownback (R-Kan.) to mandate more support services for pregnant women carrying fetuses with genetic abnormalities, such as Down syndrome. Focus on the Family, an influential conservative ministry, praises that bill as 'lifeaffirming.' "

Millions for "wrongful birth"

2007-07-26T13:09:00.000-04:00

Amara Estrada, right, hugs the wife of her attorney after the judgment was announced.
Photo from the St. Petersburg Times

A jury has awarded a Florida couple more than $20 million in what is being called a "wrongful birth" case. The parents had alleged that a geneticist was negligent in failing to prenatally diagnose their child's genetic syndrome. They testified that they would have terminated the pregnancy had they known.

" ... because the doctor works for the University of South Florida, the family will have to persuade the Florida Legislature to award most of the money. State law caps negligence claims against government agencies at $200,000.

"Daniel and Amara Estrada claimed in the lawsuit that if their first child's condition - a genetic disorder called Smith-Lemli-Opitz syndrome - had been correctly diagnosed, a test would have indicated whether their second child would also be afflicted ...

"But, they say, Dr. Boris Kousseff, who treated their first son, Aiden, after his 2002 birth determined that the child's birth defects were not specific and did not diagnose Smith-Lemli-Opitz syndrome."

Related links:

-- From the St. Petersburg Times, this story:

"From the moment their son was born, Amara and Daniel Estrada knew he would suffer. Baby Aiden had webbed toes, a cleft palate, low-set ears, a small head and genitals so tiny doctors had a tough time determining his gender..."

-- Link to the Smith-Lemli-Opitz Foundation website.

Planned Kevorkian speech draws protests

2007-07-26T12:36:00.001-04:00

Jack Kevorkian, shown in 1991 with his "suicide machine."
AP photo from New York Times.

A scheduled speaking engagement by Jack Kevorkian at the University of Florida is drawing protests from critics of euthanasia. Bobby Schindler, brother of Terri Schiavo, is organizing a petition drive seeking to get UF to withdraw its invitation to the man who has been called Doctor Death.

"The scheduled Oct. 11 appearance at UF will likely be his first paid public speaking engagement since his June 1 release from prison, according to his attorney. Kevorkian served eight years for second-degree murder in the poisoning of a man who had Lou Gehrig's disease."

Other recent coverage of Kevorkian includes:

-- An interview in the New York Times after his release from prison.

"But eight years behind bars and a strict list of promises to gain parole have done nothing to mellow the blunt, passionate, combative advocate for physician-assisted suicide. "

-- An interview by Detroit Free Press columnist Mitch Albom.

"After an hour, I knew I wouldn't want to go via Jack Kevorkian, a man for whom the world is bleak, happiness is rare, belief is a waste of time and life is a finite, meaningless entity. The act he champions may indeed be one of compassion, but how can it be delivered by such a cold, cold heart?"

-- A column in the Boston Globe, "Helping my Father Die," by Darshak Sanghavi.

"Dr. Jack Kevorkian was never an attractive poster child for dignified and comfortable deaths for the terminally ill. That's too bad, because Kevorkian was on to something important."

No genetic privacy? No problem.

2007-07-25T12:20:00.000-04:00

Medical investor Esther Dyson explains why she feels comfortable exposing her genetic and medical information on the Internet. She acknowledges that she doesn't have deep secrets or vulnerabilities that might expose her or her relatives to stigma or loss of insurability, and wonders what transparency may mean to others who are "less fortunate."

No matter, she says; the broader spread of medical and personal information on the Internet and elsewhere is "inevitable." See her Wall Street Journal column here.

The next generation of bionic people

2007-07-25T01:30:00.000-04:00

New Yorker staff writer Ben McGrath chronicles the life of Claudia Mitchell, a young woman who loses her arm in an accident and gets a bionic replacement. The story in the July 30 issue is available at newsstands, not on the Internet.

Schools beat back demands for special-ed services

2007-07-25T01:05:00.000-04:00

Parents Face Long Odds Amid Cost Concerns

Daniel Golden writes in the Wall Street Journal about a national pattern of denial of claims for special education services, quoting disability advocates and parents.

They say administrative reviews in many parts of the U.S. overwhelmingly back school districts in disputes over paying for special-education services. State education departments, which have an interest in keeping down special-education costs, typically train or hire the hearing officers. Also, recent U.S. Supreme Court decisions and changes to federal law have made it harder for parents to win cases.

Although relatively few disputes between parents and school districts reach the hearing stage, the decisions set ground rules for how much extra assistance districts must provide disabled students, who comprise 14% of all public-school students. In recent years, schools have "mainstreamed" more students with disabilities in regular classrooms, hoping to benefit the children through interaction with nondisabled peers while saving money at the same time.

The battles reflect tension over the high cost of special education. In 1999-2000, the latest year for which figures are available, national spending on special education reached $50 billion, according to the Center for Special Education Finance, a nonprofit research group. In 2005-06, New York City's public school system alone spent $390 million on private education for disabled students considered unsuited to public school. Such tuition can cost $50,000 a year or more per pupil.

In China, children with disabilities are sold into slavery

2007-07-25T01:00:00.000-04:00

A reporter explores the sale of children, often disabled, to work as beggars on the streets in China. The news follows stories earlier this summer about slave laborers, again often people with disabilities, who are forced to work in Chinese brick factories. How will these people be affected next year when Beijing hosts both the Olympics and Paralympics? From the (UK) Observer.

A helping hand for families living with chronic illness

2007-07-23T16:46:00.000-04:00

The Los Angeles Times reports on three nonprofit websites that offer web pages to families with chronic illness, allowing them an easy and effective way to communicate with family and friends. Leading sites are Caringbridge.org, CarePages.com and theStatus.com. Families praise them for helping to promote a community of care around their loved ones.

Alzheimer's treatment seen

2007-07-23T16:36:00.001-04:00

And while we're on the subject of doom, Alzheimer's style, British researchers report that an effective treatment may not be far off. From the (London) Evening Standard. Link here.

To headline writers: Two thumbs down

2007-07-23T13:47:00.000-04:00

Nominations for least favorite headlines:

Doomed from birth to death. From the (Toronto, Canada) Globe and Mail. On a story about the link between Down syndrome and Alzheimer's disease. See it here.

While it is indeed tragic that individuals with Down syndrome have a greater chance of getting Alzheimer's than the general population, it seems highly insensitive and unnecessary for the headline writers to refer to them as "doomed." Many, many people with Down syndrome are happy and productive community members; others are trying to make the most of their situations. One wonders: would a story about Elizabeth Edwards, who is living with incurable cancer, have carried a headline referring to her as "doomed"?

When an extra chromosome is one too many: Corruption to genes passed down to the baby from his parents can cause a myriad of problems. From the (Malaysia) New Straits Times. Link here.

As if babies didn't have enough problems -- now they have to deal with corruption. And very long headlines.

Braille literacy drop called civil rights issue

2007-07-23T08:54:00.000-04:00

The Christian Science Monitor reports that the number of Braille-literate children has dropped precipitously. It is estimated that between 12 and 20 percent of 55,000 legally blind children in the U.S. can read Braille, down from about 50 percent in the 1960s. Many believe the trend will provide a significant barrier to employment, as current studies indicate that at least 90 percent of the blind people in the U.S. who currently hold jobs are Braille literate.

"[Literacy] is the biggest single determinant of a person's ability to be successful," says Steven Rothstein, president of Perkins School for the blind in Watertown, Mass. … (He) considers the decline an "enormous crisis" requiring a civil rights movement for America's disabled.

… The decline in literacy is generally linked to the 1973 Rehabilitation Act, which mainstreamed blind students into public schools where teachers were often unprepared to teach them. Today about 85 percent of blind schoolchildren are enrolled in public schools.

The Zeitgeist

2007-07-22T03:07:00.000-04:00

Current reporting on the r-word

A regional campaign chairman for Rudy Giuliani has come under fire for using the word “retarded” when referring to the National Association for the Advancement of Colored People. Former South Carolina congressman Arthur Ravenel Jr. referred to the NAACP as the “National Association for Retarded People” at a rally in support of the Confederate flag in the year 2000. The Democratic National Committee has labeled the comment as “racist.”

From the Wall Street Journal:

“Mr. Ravenel said he wasn't sorry about his remarks but didn't mean to give offense to the retarded. He has previously said that he mistakenly transposed the name of the civil-rights organization with an advocacy group for the mentally disabled with which he worked in the past.”

The anecdote is part of a larger WSJ wrapup on the GOP’s political troubles in the South. The DNC has demanded a denunciation from Giuliani. A column from the Greenville, S.C., News is here.
______

Celebrity Courtney Love, visiting London, was quoted criticizing the recently enacted British ban on smoking in bars, workplaces and public buildings. From the (UK) Sun.

Said Love: "The only place I can smoke in England is the Houses of Parliament! That's so retarded!"

______

Stats, as of July 21, 2007

From Youtube.com
Videos with the keyword “retarded”: 33,900
Videos with the keyword “tard”: 4,420
Videos with the keywords “so retarded”: 518
Number of videos in the top-4-most-viewed that have the word “retarded” in the title: 1

From Urbandictionary.com
Number of synonyms for the word “retarded”: 50
Number of definitions for the word “retarded”: 31
Number of American presidents referenced in definitions of the word “retarded”: 2

Amnio report sparks disability debate

2007-07-21T18:47:00.000-04:00

A report in the current Journal of Obstetrics and Gynaecology of Canada concludes that American data has understated the risk of miscarriage during amniocentesis. The paper quotes the authors as saying that the American findings are “misleading and should be interpreted with caution.” Story from the (Toronto, Canada) Globe & Mail here. The story sparked an impassioned public comment session, with newspaper readers debating the value of late-in-life pregnancies and the lives of people with disabilities. Link here.

UCLA offers college experience to students with intellectual disabilities

2007-07-21T03:54:00.000-04:00

The inaugural class of UCLA's Pathway Program is set to begin this fall. Sixteen students with intellectual disabilities including autism, Down syndrome and Asperger's syndrome will be attending classes through UCLA Extension, and they couldn't be prouder. From the story in the university's faculty and staff newspaper, Today:

Their excitement about what's in store for them this fall is palpable. It's in the eager glances and smiles they give their parents at an orientation session when meal plans, roommates and welcome week activities are discussed. It's the pride — even awe — with which their parents watch them assemble around The Bruin Bear for their official class portrait.

"It's inconceivable that our kids are actually doing this," confided parent Kathe Beltran, whose daughter Kate is in the class....

... This long-awaited program has been carefully crafted to offer students a college-going experience as well as a curriculum that blends academics with the practical skills they'll need to live independently.

... Living in apartments near campus, they will take classes in four UCLA Extension buildings and spend 60 hours a month learning to pay bills, budget, make medical appointments, use public transportation and cook, among other life skills. They will study at the library, exercise at the Wooden Center, eat in the dining halls, hang out at Ackerman and participate in campus life. Then at the end of two years, Pathway will help students transition to independent living.

For more information, see the UCLA Extension Pathway website.

Full disclosure: my husband and I are among the founders of Pathway.

Fetal medicine expert tells all

2007-07-20T14:44:00.000-04:00

In an interview in the (UK) Guardian & Observer, fetal medicine pioneer Charles Rodeck tells us how things look from his side of the examining table. It's a sobering view. Rodeck is the founder and head of the unit for fetal medicine at University College Hospital, London, and was among the first physicians to pioneer fetal ultrasound in the seventies.

Among his revelations: doctors are increasingly being called upon by panicked parents to predict the level of disability that may be present in a child, and they are not equipped to do it.

... Unless a fetus is suffering from a particularly well-defined abnormality, it is impossible for a physician to predict how a condition will manifest itself in any child. "Our diagnostic abilities have outstripped our therapeautic skills," Rodeck said. "We now screen more women and can identify a huge variety of abnormalities, but we still can only treat a minuscule fraction...."

"... I have to tell parents all the time that just we don't know or can't predict exactly how their child will be affected by any particular condition," he said. "Often we can't even give a name to the abnormality suffered by a fetus...."

Rodeck also offered stiff criticism to the commercial IVF industry, which he characterized as "very competitive."

"Some clinics try to keep a step ahead by offering more interventions than their competitors, even if they know these procedures are uproven and may not work. This can become exploitation..." He said he is particularly concerned about a growing number of pregnant women he sees who have been prescribed unnecessary, unproven and possibly harmful drugs by private clinics.

The full story can be seen here.

Kuwaitis reported biased against Down syndrome

2007-07-20T14:26:00.001-04:00

The Kuwait Times reports that Kuwaitis "attach a myriad of prejudice to people living with the Down syndrome." Among the anecdotal evidence cited: parents who subject children to multiple plastic surgeries to disguise their appearance, and parents who tied their child's hands and kept him in the basement as punishment.

A teacher is quoted as saying: "Some people fear them. Others reject them and don't accept them. There is a lot of rejection."

The link to the story is here.

Locked out.

2007-07-19T13:26:00.000-04:00

Note to Medicaid patients: The doctor won't see you.

The Wall Street Journal reports on another way that people with disabilities are being sent to the back of the line. A growing number people with disabilities are losing access to health care or facing monumental delays as doctors across the country increasingly refuse to accept Medicaid patients, reports Vanessa Fuhrmans. Link here.

The story, which focuses on Michigan, raises the following points:
-- Straining under higher costs, Medicaid has been freezing or slashing fees to doctors. Doctors say Medicaid payments now do not even cover their costs.
-- A recent report from the non-profit Center for Studying Health System Change found that nearly half of doctors polled said they had stopped accepting or limited the number of new Medicaid patients.
-- Specialists are exiting the system at a higher rate than primary care physicians.
-- Delays in receiving treatment are leading to serious health consequences and costly emergency care, patients say.
-- The dwindling number of doctors who accept Medicaid patients undermines some presidential candidate proposals to broaden health-care coverage by expanding Medicaid eligibility.

Sex selection redux

2007-07-18T13:56:00.000-04:00

Top fertility doctors in Britain want to lift the ban on parents choosing the sex of their babies, saying that couples have the right to pick "a pink one rather than a blue one." From the Daily Express (UK). Link here.

Parallels between sex-selective abortions and selective terminations

2007-07-17T14:00:00.000-04:00

Taken together, this story and the accompanying letter to the editor present a parallel to prenatally diagnosed disabilities and termination.

First, the story:

India tries to stop sex-selective abortions. New York Times. Link here.

"Last year, a study by The Lancet, the British medical journal, reported that up to 500,000 female fetuses are aborted each year in India, leading to the birth of nearly 10 million fewer girls over the past two decades. Experts say that sex-selective abortions in India reduced the number of girls per 1,000 boys from 945 in 1991 to 927 in 2001."

Now, the letter. Link here.

"India’s latest proposal to stop sex-selective abortion regrettably overlooks a root cause of the discriminatory practice ... Until the Indian government adopts and enforces laws and policies that promote education for women, eliminate discrimination in the family and the community, and ensure women’s access to safe reproductive health services, it will continue to disempower its women."

To connect the dots: In societies in which people with disabilities are not being provided with adequate education, health care and other needed services, couples look to termination to avoid personal heartache. The net effect is a practice that continues to foster discriminatory attitudes against a historically stigmatized group.

Who is helped and who is harmed by using donor eggs?

2007-07-16T11:39:00.000-04:00

The practice of using donor eggs for assisted reproduction is growing dramatically, giving older and infertile women new hope of giving birth. (Your Gamete, Myself, by Peggy Orenstein, New York Times magazine, July 15.) While we hear lots of enthusiasm among those who stand to profit personally or financially, the sad truth is that many thousands of young egg donors are being lured by the promise of quick cash without adequate information about the risks they may face of serious physical harm, damage to their future fertility, or even death.

Because egg donation is virtually unregulated, long-term studies about the effects of intense hormonal medications and surgical procedures on young women have not been done. Women and their doctors ought to lobby for regulation and oversight, so the safety of egg donors will not be overlooked in the market’s multi-million-dollar quest for eggs promising certain hair color, eye color, and taste in movies.

Related links:

From the New England Journal of Medicine: The egg trade -- making sense of the market for human oocytes, Debora Spar, March 29, 2007

From the BBC: Safety of egg donation 'unclear' -- June 30, 2005

Early screening cuts births of children with Down syndrome by 50 percent in Denmark

2007-07-13T17:56:00.000-04:00

Early ultrasound screening, coupled with a blood test, has reduced the number of children born in Denmark with Down syndrome by 50 percent, according to Professor Karen Brondum-Nielsen of the Kennedy Institute in Glostrup, Denmark.

The findings were the result of an analysis of data collected in three counties in Denmark, accounting for about one-fifth of the nation’s population, for the years 2004 to 2006. The analysis followed a recommendation for new guidelines for prenatal diagnosis in 2004 by Denmark’s National Board of Health.

Until September 2004 the Danish government had recommended that only pregnant women over the age of 35 should be offered the combined non-invasive tests, which are carried out between the 11th and 14th weeks of pregnancy.

But Denmark's national health board subsequently recommended that the early tests should be made available to all women who requested them, regardless of age. The combined testing regimen included a nuchal translucency ultrasound along with a maternal blood test.

Brondum-Nielsen reported that women whose initial screen indicated an elevated chance of Down syndrome were then offered an invasive test (amniocentesis or chorionic villi sampling). As a result of the early screening, she said, rates of invasive testing declined during the period studied.

See the reports here and here.

"... The professor concluded that there was a need to analyse the psychological impact of the policy, both in regard to the pre-test counseling available to pregnant women and their attitudes towards screening."

Unkind words wound people with disabilities and their caregivers

2007-07-12T05:33:00.000-04:00

Hello, all. I'm back after a brief vacation.

Check out this morning's USA Today for responses to its recent column about the widespread use of the word 'retard' as an insult. The columnist, USA Today reporter Theresa Howard, made the point that the use of this common slur diminishes the dignity of the estimated 7.5 million Americans who have intellectual disabilities as well as their families.

From today's letters:

"I just don't understand why many people avoid using racial slurs but somehow think it is OK to use 'retarded.' I know that in the vast majority of situations, people are not trying to be mean; they're just oblivious. Hopefully, commentaries such as Howard's will raise awareness of just how inappropriate it is to use degrading, insensitive terms in casual conversation. Perhaps people will begin to understand that they are being disrespectful to those who have developmental disorders and to the families who love them."

Couldn't have said it better myself. The letters can be found here.

Sadly and predictably, there are also many foolish and insensitive comments now attached to the original column, including some from writers advocating for their right to free speech -- an odd and paranoid twist, considering that Howard was arguing for civility, not censorship. (Navigate back to it here.)

2007-07-06T23:17:00.000-04:00

From In These Times:
Genetic Disorder: Parents with limited incomes are being denied access to genetic tests and the counseling that experts say should accompany them

From Boston Globe: With rise in autism, programs strained

From the Times (UK): Couples are 'driven to IVF tourism by ethical disparities across Europe'

From ABC (Australian Broadcasting Corp.): Stem cell research boosting women's egg trade

From Fox News: Infanticide, abortion responsible for 60 million girls missing in Asia

From the American Medical Association News: Confronting eugenics: Does the now discredited practice have relevance to today's technology?

Prenatal screening tied to MD concerns over lawsuits: Economist

2007-07-05T10:25:00.000-04:00

In a report from the Economist, ACOG's prenatal testing and screening guidelines are attributed at least in part to physician worries over wrongful birth litigation. See the story here:

Wanted: Perfection. Doctors try not to be sued over Down syndrome babies

Key quote:

The new guidelines may also be triggered by the surge in lawsuits. In November an ACOG survey found that 65% of obstetrician-gynecologists had reduced their practices for fear of liability claims. Clinic workers confirm that women who have imperfect babies tend to blame doctors. One nurse says her clinic can't afford the insurance to ward off the suits. 'If more tests reduce our risks, then so be it.' (emphasis mine)

What's remarkable to me is that more media attention hasn't been paid to the connection between wrongful birth lawsuits, lack of tort reform and the broadening of prenatal testing. Although ACOG has presented the guidelines as a response to requests from women, the Economist makes the point that the guidelines often are not well implemented, and many women are feeling ill-served.

From the story:

Many obstetricians are clearly overworked, with no time to offer more than suggestions and results. And although the guidelines describe these tests as options, many pregnant women are feeling badgered. Some are being asked six times or more whether they want an amniocentesis.

The economic subtext becomes more clear when you read the most recent ACOG report on litigation here. Among the key findings from the 2006 ACOG survey on professional liability:

-- Almost 70% of ob-gyn survey respondents have made changes to their practice as a result of the affordability and/or availability of professional liability insurance, and 65% have made one or more changes to their practice as a result of the risk or fear of professional liability claims or litigation.

-- A total of 89% of respondents indicated they had at least one professional liability claim filed against them during their professional careers, or an average of 2.6 claims per ob-gyn.

-- Top lawsuit allegation made against gynecologists: delay-in or failure-to-diagnose.

In other news:

From USA Today:
A mother's view of a word that wounds: 'Retard'

From the Independent (UK):
Screening IVF embryos 'can damage birth chances'
(See the original report in the NEJM here.)
Childhood asthma gene identified by scientists

From the Guardian (UK):
Benoit son's disability questioned

From WPVI-TV in Philadelphia:
Gifts for every parent

A Tale of Two Daniels

2007-07-03T15:15:00.000-04:00

How the WWE tried to protect its image by exploiting our prejudices

In the era of celebrity-driven philanthropy, it just might have been a non-profit’s worst nightmare. A celebrity does something ghastly, and surprise! Somebody blames the people you’re trying to help.

That’s what happened in the world of Fragile X last week when World Wrestling Entertainment tried to deflect blame for the apparent murder/suicide of wrestler Chris Benoit and his family.

Brushing aside questions about illegal steroid use, the WWE put out the word that Benoit’s 7-year-old son Daniel had Fragile X syndrome – an account that family members now dispute -- and that his disability was a constant source of tension for Benoit and his wife.

Faster than you can say eugenics, speculation about Benoit’s anguish over the boy’s “suffering” swept the airwaves and the internet, eliciting sympathy and temporarily blotting out the “roid rage” theories. Who among us can judge, wrestling fans asked one other. Perhaps dealing with a chromosomal anomaly was just too much stress. Perhaps Daniel was a “burden;” perhaps he was hopeless.

Let me add my own theories to the mounting pile. Perhaps the publicly-traded WWE was engaging in damage control. Reasoning that fans would be repelled by the specter of a celebrity turned murderer, perhaps they were banking on the hope that many might perceive a utilitarian logic in ending the life of a child with a disability. Judging by the number of Google hits that now connect Benoit’s name with the term “mercy killing,” the WWE may not have underestimated the public sense of justice.

Whether Daniel Benoit did or didn’t have Fragile X is not our business – or the WWE’s. What we should be concerned about instead is the WWE’s cynical effort to shift blame to an innocent and voiceless young boy, in effect victimizing him a second time.

In so doing, the WWE also sent hurtful messages about the many thousands of people who are living productive, satisfying and dignified lives with Fragile X syndrome, and about their families. To suggest that their lives are fraught with despair is both inaccurate and demeaning, and fuels public stigma against them.

Far from being a rare medical condition as it was described in media reports, Fragile X syndrome is shared by between 70,000 and 100,000 people in the U.S. according to the National Fragile X Foundation. If all the people who are carriers are included in that estimate – an estimated 1 in 130 women and 1 in 700 men -- the number rises to more than a million. The disorder gets its name from the long tail of the X chromosome.

While Fragile X syndrome is the most common inherited cause of mental impairment, better education and early intervention services have greatly improved prospects from what they were a generation ago. Experts say many young adults with Fragile X are now holding jobs and living independently or semi-independently, and that the trend will continue to grow.

We may not be aware of it, but it’s very likely that some of these people are among our neighbors and friends. If we are really worried about alleviating their “suffering,” then perhaps we should turn our attention to broadening the availability of accurate diagnosis and intervention services, and stepping up research into treatments.

I’ve often wondered why the public is so quick to swallow unproven assertions that families of people with disabilities are dysfunctional, and that disability in a family causes it to become violent.

Perhaps it’s a failure of imagination. If we haven’t lived with a person with a disability, we don’t know what to expect. As with raising any child, raising a child with a disability brings many aggravations as well as joys.

Studies have shown that families with disabled children report they fare no better or worse than others, and often rate themselves higher in personal satisfaction than other families. Many of them say what’s stressful is less their child’s diagnosis than the public stigma attached to disability.

Our family cherishes the friendship of a young man, also named Daniel, who has Fragile X syndrome. We greatly value his kindness, charm, sense of humor and taste in television shows (which runs heavily to reruns of “West Wing”). Supervisors in the gourmet shop where he has been working are much impressed by his enthusiasm and easy way of relating with the customers. Our Daniel has friends, a supportive family and a very active social calendar. He enjoys his life.

I only wish that Daniel Benoit might have been so lucky.

For more information, visit the National Fragile X Foundation or the Fragile X Research Foundation.

A calm, rational discussion of special education ….

2007-06-27T21:08:00.001-04:00

…. is not happening at the Wall Street Journal.

Nobody ever said that covering education is easy, and the job only gets tougher when reporters are called upon to spin compelling yarns while evaluating complex educational trends. Factor in the limitations posed by production and deadlines, and the results sometimes aren't pretty.

Unfortunately, that's what happened on the front page of the Wall Street Journal this week when John Hechinger's story on inclusion ended up sounding more like a rant against educating children with disabilities in the general education classroom.

The story sported the inflammatory subhead “Disabled children join peers, strain teachers.” It stirred up a lot of fear but didn't provide much insight, and didn’t even begin to discuss the benefits for all students that have been documented in well-run inclusion programs. Instead, the reader was served a stew of anxiety in which programs were evaluated not for their effects on students but on teachers, and the main concern seemed to be whether the presence of children with disabilities is damaging to teacher morale.

The less-than-balanced account relies heavily on the viewpoint of a disgruntled teacher in Scranton, PA, who announces that one particular 8-year-old student has driven her to early retirement. Clearly, this woman has axes to grind. The story appears to quote from a diary she kept of the student’s actions throughout the year, but if the reporter was present to witness any of the events described he gives no indication of it.

The end result is a quick-and-dirty account of a complex subject that deserves far more thoughtful consideration and a lot less finger-pointing – particularly against children. It’s worth a moment here to remember the origins of the federal law guaranteeing children with disabilities a right to education in the least restrictive environment: thousands of children with disabilities in 1975 were not getting any education at all.

It’s also worth remembering that the law provides no requirement that all students with disabilities get the same or similar placement. Classroom placements are determined individually, which gives administrators and teachers the flexibility to serve each student’s needs.

Implementation of special education mandates since the passage of the 1975 law has been disappointing, with students ill-served as states, localities and the federal government have wasted precious time assigning blame over funding and other issues. Inclusion has worked well for both students and teachers in settings in which training and support have been provided, and in which communication has been a priority. Sadly, those situations have been the exception.

The U.S. Department of Education reported last week that after 30 years, only 9 states have met acceptable standards. That's the real story. We've thrown away time in the lives of children that can never be reclaimed. The Journal ought to be asking why school administrators still can't get it right.

POSTSCRIPT: Did anyone else cringe over the publication of the 8-year-old student’s name and likeness? That she is a vulnerable child with a disability is obvious. That she is not capable of giving informed consent to being publicly pilloried as special education’s Public Enemy Number One seems equally obvious. Regardless of what her parents may or may not have said, this assault on her dignity should not have been permitted.

AND ANOTHER POSTSCRIPT: We wonder why the Journal is suddenly worried that inclusive practices are driving good teachers out of teaching. If you read the fine print, you learn that complaints on this score don’t even make it into the top ten sources of dissatisfaction by reporting teachers. (Not surprisingly, the top gripes circle around such evergreen topics as inadequate planning time, poor salary and heavy teaching loads.) “Mainstreaming special students” comes in twelfth – not enough to keep us up nights.

Click here for letters to the Journal.

Prenatal screening panic

2007-06-24T17:34:00.000-04:00

Dear Pat,

A dear friend's niece is facing a crisis. She is pregnant at 35 with one little daughter, and the prenatal screening tests are showing but not yet conclusively the possibility of Down Syndrome in this pregnancy. She is understandably overwhelmed. She won't have a complete report for another 10 days. Do you know what resources are available for counseling and helping a woman at this point in her life? I am sure there are many and some will presumably come from the OB-GYN, but if you have any suggestions, they would be welcome.

I have always told my daughters that in any critical situation there is time, as strange as that may sound, to still examine things and think them through. This definitely feels like one of those moments. This woman is utterly overwhelmed and I have tried to offer my friend encouragement to help her slow down, gather information, think carefully and proceed with care. The stakes on either side of her choice are very high.

What can we tell her?

Claudia
______

Yes, you're right: there is time to gather information and think it through. Unfortunately there’s a lot of confusion out there, and it seems that we’ve been much more successful in developing tests than in helping people interpret the results.

First, there’s the confusion about the tests themselves. Your friend should be aware that the prenatal screens used in the first trimester produce data in what is called a "probabilistic" format. In other words, they are not definite; they say that you may have one chance in X number of a particular result.

It's important to know that what the woman receives are odds (sort of like Saturday night in Las Vegas), and that the screens are designed in such a way that they deliver many false positives as well as false negatives. I've had email from women who have been told they had a high probability of a child with DS only to have a child without it, and women who were told their child would likely not have DS and then did have it. In all likelihood, her doctor will recommend followup testing of amnio or CVS, which will offer more definitive (although not infallible) information.

Then there’s the confusion about what a diagnosis of Down syndrome could mean. Everyone is unique, and there’s no way to predict what a person will be able to do by looking at their chromosomes. Recent advances in education and healthcare have brought about marked improvements in outcomes for people with DS these days, according to parent reports. (See "Prenatal tests put Down syndrome in hard focus" in the New York Times.) But national outcomes data is not kept, so it's understandable that medical professionals who have minimal contact with people with DS may well be unaware of progress that parents are seeing.

In a recent survey of mothers of children with DS published in the American Journal of Obstetrics and Gynecology, Dr. Brian Skotko found that parents feel obstetricians and genetic counselors fall short when it comes to delivering a prenatal diagnosis of Down syndrome to pregnant women. (You can access the study here.) Mothers who received a prenatal diagnosis of DS reported that doctors did not give them a balanced view of the possibilities and realities of life with Down syndrome, and did not provide up-to-date information.

With that in mind, your friend might want to contact her local Down syndrome organization. In my experience, predictions by doctors and lists of symptoms in medical textbooks can be very limiting. It’s not until you meet other families and get current information that you begin to see the possibilities. The National Down Syndrome Congress and the National Down Syndrome Society, available on the internet here and here, may be able to help you find a local affiliate.

And if that’s not enough to think about, you should also be aware that OB/GYNs are feeling the bite of rising medical liability insurance costs as courts in some states have been awarding damages in what are being called "wrongful birth" lawsuits. With that kind of backdrop, it's understandable that many doctors are insisting that women get prenatal screening (or sign a waiver declining it) as a way of warding off potential lawsuits. Sadly, this only adds to the level of anxiety that surrounds the topic of prenatal screening.

As I'm typing this, my daughter Margaret is busily reading "Julia and Jacques Cooking at Home" by Julia Child and Jacques Pepin, looking for recipes for tonight's dinner. She has completed high school and a post-secondary culinary arts program, and is excited that she will be moving into her own apartment with a couple of girlfriends (with some help from mom and dad) later this summer.

I guess I'd want to tell your friend that in the final analysis, being a parent to any child is both work and a gift. Like many things in life, it mostly requires that we keep smiling and keep showing up. Having a few good friends also makes a world of difference.

P.S. Here's a link to a story from the Sacramento Bee the other day about a "precocious" third-grader who's performing in her local junior production of "The Music Man." Her name is Katina and she's got DS. The photos are adorable.

Race, genetics and ... what else? Prenatal diagnosis

2007-06-23T16:51:00.000-04:00

Osagie K. Obasogie , writing on the Bioethics Forum, discusses the possible impact of efforts to decode the genetics of skin color. He wonders whether the money is there to create prenatal diagnostic tools to allow couples to choose the skin colors they want for their children, and ponders the effect of such a development on social constructions of race. Good questions. Given that racial inequality has historically been based largely on skin hues, how would it feel to live in a society in which the haves could choose their offspring's color and the have-nots could not?

Says Obasogie:

"What’s happening with genetic research into skin color is as much an ethical development as a scientific one."

States get dismal report cards on special ed

2007-06-22T21:31:00.000-04:00

The U.S. Department of Education has graded the states on how well they are educating children with physical and mental disabilities. Nine are complying with the law, five need "intervention," and the rest "need assistance." See the Department of Education release here, story on stateline.org here. The grades are based on public information submitted by the states for the 2005-2006 school year.

The states that met the requirements for children aged 3 to 21 were: Alaska, Connecticut, Hawaii, Michigan, Oregon, Pennsylvania, Tennessee, Virginia and Wyoming.

Those listed as "needing intervention" were: Colorado, Indiana, North Carolina, North Dakota and Washington.

So let's get this straight: it's been 32 years since Congress passed the law mandating public education for students with disabilities, and only nine states are in compliance?

Topics in prenatal diagnosis: Cosmetic enhancement, bullying, homophobia ....

2007-06-21T21:08:00.000-04:00

The British Human Fertilisation and Embroyology Authority has granted a license to a London family clinic to screen embryos for a genetic disorder which causes a severe squint. The action is being described as the first time a British clinic will be allowed to screen embryos for cosmetic problems. Critics say the action is inappropriate because the condition is not life-threatening. Story from the BBC here; from the London Telegraph here.

The Telegraph account quotes Prof. Gedis Gurdzinskas, who received the license, as saying that he would screen for any genetic factor, cosmetic or otherwise, that might cause a family severe distress.

When asked if he would screen embryos for factors like hair colour, he said: "If there is a cosmetic aspect to an individual case I would assess it on its merits.
"[Hair colour] can be a cause of bullying which can lead to suicide. With the agreement of the HFEA, I would do it. If a parent suffered from asthma, and it was possible to detect the genetic factor for this, I would do it. It all depends on the family's distress."

As long as there is money to be made screening pregnancies and embryos, there will be no shortage of people willing and eager to perform the service. But as the saying goes, the fact that we can do a thing is not an argument that we should. Increasingly, it seems, we are turning to market forces to eliminate problems that more properly should be addressed by social action. Prenatal screening to avoid bullying by those who don't like our hair color? Please.

If parents perceive themselves as being morally obliged to create "perfect" children who will not arouse social opprobrium, society will inevitably become less tolerant of those who are different, whether that difference resides in disability, a luxurious crop of red hair, or sexual orientation. For more on the topic of selecting for sexual orientation, see Alice D. Dreger on the Bioethics Forum: "Liberty and Solidarity: May We Choose Children for Sexual Orientation?"

She argues that prenatal screening attaches negative attitudes to the conditions that are screened, recounting a case in which a friend was "scolded" by a stranger for having a child with Trisomy 21 (Down Syndrome).

"I can fully imagine a scenario where, thirty years from now, a woman tells a friend her son has come out as gay, only to have the friend respond, “Didn’t you get the test?!” Could we really imagine that offering such a test would have no negative impact on how an already-homophobic culture views people who are gay (and their parents, for that matter)?"

Here's her conclusion about prenatal screening and termination for homosexuality (which she credits to researcher Simon LeVay:

"... we shouldn't ban it. Because that would be allowing governments to make decisions about our reproductive choices, which isn't a good idea. . . . But I reserve the right to become hysterical about it.”

Now that's productive.

More on the so-called "gay gene" from the Toronto Star here.

Michigan woman with DS killed in apparent murder-suicide

2007-06-21T20:43:00.000-04:00

Glee Bengel and her 24-year-old daughter April were found dead of shotgun wounds at their Lansing-area home this week, and police say they suspect the mother killed her daughter and then herself. Glee Bengel left a note saying that her colon cancer had returned and she feared that April would not be cared for in the event of her death.

A news report described April as a "delightful" young woman who operated the cash register in a local training program and was working on living independently. Links here and here. John Schneider, writing in the Lansing State Journal, extends his sympathy to the mother, writing that murder-suicide in such a case is not unprecedented. His words:

"... I don't know what other alternatives Glee Bengel had - for herself, or her daughter. But the world, minus the sheltering arms of a loving parent, can be a harsh place for people who depend completely on the selflessness and forbearance of other human beings. That's why we sometimes read about parents who just aren't willing to send their children to that place."

Sigh. Am I reading what I think I'm reading? The columnist finds it understandable for this mother to kill her daughter because her daughter had Down syndrome? That this case is a tragedy is not in question. But the tragedy was not that the daughter had a disability. (In fact, it sounds as though she was pretty capable.) The tragedy here was that her mother was not willing or able to seek the help that her daughter may have needed to maintain a secure and satisfying adult life in her mother's absence.

My hope, for this columnist and for the rest of us, would be that a case like this would provide an opportunity to examine the services that are available for families of people with disabilities, and to make reasoned recommendations about what improvements are needed. Instead, we find a writer who implicitly excuses this young woman's killing because he sees death (by shotgun blast) as preferable to a life in which she must depend on people other than her mother.

Attitudes like the ones expressed here serve only to extend unwarranted public stigma against people with disabilities, and to excuse society of the responsibility of caring for its more vulnerable members. If we aren't providing adequate support for individuals and their families, then let's be more forceful in advocating for needed changes in the memory of April Bengel. She deserves nothing less.

Note to the media: We can do better

2007-06-20T09:31:00.000-04:00

Kudos to Susan M LoTempio for her essay "How the News Media Handicap Those with Disabilities." Writing for the Poynter Institute, a school for journalists, LoTempio rightly skewers "feel good" stories about overcoming disabilities and takes writers to task for using language that reduces people to pitiable stereotypes. She targets a recent NPR report using the phrase "confined to a wheelchair" as inaccurate and disrespectful. Also receiving a dart was a story in Editor & Publisher bearing the headline: "Deaf Photog and Blind Editor Overcome the Odds Together."

Writes LoTempio:

"Overcoming the odds" is one of several troubling formulas that journalists choose when writing about people with disabilities. The others are, sadly, making people into heroes, objects of pity or sources of inspiration. None of those formulas will ever give a full and accurate portrait of a person with a disability because it crams the individual into some preconceived notion of what his or her life is like (but rarely is).

LoTempio also offers laurels to a New York Times story about an amputee sprinter who wants to compete in the Olympics. He uses carbon blades instead of feet. (See my earlier post here.)

A comprehensive discussion of troubling stereotypes in the media would take more time than we've got, but here's a recent nominee of mine:

USA Today's story "Despite Down Syndrome, sons compete -- and win," in which the writer profiles a single woman with multiple sclerosis who adopted four children with Down syndrome. The usual upbeat quotes about "doing your best" and winning medals in the Special Olympics are highlighted. It's hard to imagine the writer finding a less typical, and more stereotypical, subject for a story. If the writer has ever encountered a person with a disability before, or has any concept of what their lives may be like, it's not apparent here. My favorite quote: "Not surprisingly, Teri, a single parent, is considered a minority, if not an exception, for doing what she does." No, do you think?

Susan's earlier essays can be found here.

Guaranteed to give you a headache

2007-06-19T10:15:00.001-04:00

In this morning's New York Times: "States face touchy decisions on who is mentally fit to vote."

It's a thoughtful consideration of what happens when officials try to determine eligibility for voting, tiptoing around conflicts among the legal, medical and popular definitions of such terms as "insanity," "idiot" and "non compos mentis." This is a tough subject, and it's approached with care. Rights and risks of vulnerable people are discussed; someone asks whether people with medical diagnoses should be subjected to greater scrutiny than the average person (who may be making decisions based on jokes heard on the Daily Show.)

So then why do I have a headache? It's this quote, from the chairman of the Cranston, R.I., board of canvassers:

"I just think if you are declared insane you should not be allowed to vote, period. Some people are taking these two clowns and calling them disabled persons. Is insanity a disability? I have an answer to that: no. You're insane; you're nuts."

Nuts. Is that the legal term in Rhode Island?

Still more on the "pillow angel" saga

2007-06-17T10:41:00.000-04:00

The Seattle Post-Intelligencer carries an insightful column by Anne McDonald about Ashley, the 6-year-old girl whose uterus and breast buds were removed at the request of her parents. The parents had argued that it would would be easier to care for their daughter, who has mental and physical disabilities, if she did not grow to an adult size, and that a childlike body would afford her "more dignity and integrity than a fully grown female body." In their blog, the parents (who have not revealed their identities publicly) refer to their daughter as "Pillow Angel."

Last month, in the face of an investigation and mounting controversy by disability rights advocates, Children's Hospital in Seattle admitted that the hysterectomy was illegal. See link.

McDonald's column explores her own experiences as a child whose growth was attenuated and whose potential was overlooked by medical professionals. She questions the assessments of Ashley's abilities, and criticizes the decision to subject the girl to surgery without an effort to obtain her participation and consent for the procedure.

Her words:

"My ongoing concern is the readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

"The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

"No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

"Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own."

Real jobs for real people, take 2

2007-06-16T11:37:00.000-04:00

Just heard a speech by Walter Smith, managing partner of international law firm Baker, Botts, who was being honored for the firm's commitment to hiring people with intellectual disabilities. To learn more about the program, click this link. There was also an article about the program in the Washington Post by Amy Joyce that ran last October. (Headline: Beyond disability barriers: Employees quickly emerge as assets.) Click here for the article preview; it's now pay only.

Here's what Walt had to say:

"We got as much or more out of this experiment as did our special needs employees. In fact, our lawyers and staff have responded so favorably to the idea, that we now have eight full-time special needs employees in our five offices in the U.S.

"It just so happens that professional service firms -- that’s law firms, accounting firms, consulting firms and the like -- are ideal places to work for individuals with cognitive or physical disabilities. We have a safe and quiet environment that lends itself to training and mentoring. We have a relatively educated and caring workforce. But most importantly, we have work they can do that needs to get done."

Companies that follow the Baker, Botts example, he said, will

"... not only be doing a great service, they’ll get a great employee as well. One who will show up for work every day with a smile on his or her face, eager and thankful for the opportunity. And remember: you won't just be helping them make a living, you'll be helping them make a life."

Secret pacts a problem for special ed

2007-06-14T12:31:00.000-04:00

Okay, it's a small school district, but we're deluding ourselves if we think these practices aren't widespread.

I'm talking about confidentiality agreements. The Santa Monica, California, School District has been requiring that parents of children with disabilities promise to sign confidentiality agreements (translation: stay silent) in return for getting the educational services they feel their children deserve. Parents have criticized the policy as an effort to intimidate them into silence and put a lid on political organizing. District officials say they're just keeping costs down.

The controversy had been simmering for a while, then came to a head when the school board also required that its departing CFO sign a confidentiality agreement in return for a cash settlement.

Now the Santa Monica city council has weighed in, voting to withhold funding unless the school district changes its ways. Read the link here. And then tell me that this isn't happening elsewhere. I'll believe you. Really.

More unintended consequences of prenatal diagnosis

2007-06-08T12:49:00.000-04:00

A friend sends this article from the Sunday Times in London. Here's the text:

"More than 20 babies have been aborted in advanced pregnancy because scans showed that they had club feet, a deformity readily corrected by surgery or physiotherapy."

The article goes on to say that abortions were also carried out for webbed fingers or extra digits, which can be corrected by simple surgery. All the terminations took place after the 20th week of pregnancy, although the specific week of pregnancy for each was not disclosed. The data, from the Office for National Statistics, added to controversy that had been ignited when a British woman had an abortion at 28 weeks for cleft palate, another surgically correctible condition. It's worth noting: babies delivered at 27 weeks have a survival rate of more than 90 percent.

More text from the article:

"Some parents, doctors and charities are increasingly worried by what they see as a tendency to widen the definition of “serious handicap”. The handicap provision, which does not exist in most other countries, permits abortions to be carried out until birth. It was intended to save women from the trauma of giving birth to babies likely to die in infancy."

Among people who have had club foot: Kristi Yamaguchi, the American figure skater who won an Olympic gold medal in 1992.

Prenatal diagnosis and perceptions of bias

2007-06-06T11:03:00.000-04:00

Data here on the unintended consequences of prenatal diagnosis, this from the journal Intellectual and Developmental Disabilities. Mothers of children with Down syndrome in Germany report a much greater feeling of being involuntarily segregated in society today, compared with data collected before the widespread acceptance and availability of prenatal chromosome analysis. The authors note this finding comes even as the prognosis for newborns with Down syndrome is better than ever before in terms of life expectancy, health care and psychosocial support.

“Accordingly, parents of children with Down syndrome may experience a somewhat paradoxical contrast in society between prenatal rejection and postnatal acceptance of their child.”

More quotes:

“…. In a recent survey in Germany of parents with children who have Down syndrome, 26% reported that they had been confronted with accusations that the birth of their child could have been ‘‘avoided’’. This rate was as high as 40.5% among those parents who had received the diagnosis of their child’s disability prenatally. This observation supports the widely discussed assumption that the availability of prenatal diagnosis puts affected families under social pressure by undermining the acceptance of their child with disabilities. “

The authors conclude that mothers experience feelings of greater personal stability and self-confidence than they did 30 years ago, presumably aided by parents’ self support groups, but that they also increasingly feel that their children are being discriminated against.

“... mothers of children with Down syndrome, which the general public widely recognizes as the most prominent example of a prenatally diagnosed genetic disorder, tend to experience the availability of prenatal diagnosis as an emotional burden. Nonetheless, mothers wishing that their child would not live anymore remain rare exceptions. The improved medical care and psychosocial support for children with Down syndrome and their families seems at least to outweigh the emotional stress caused by the option of prenatal diagnosis.”

The report appears in Volume 45, number 2: 98-102. The journal is published by the American Association on Intellectual and Developmental Disabilities. Lead authors: Wolfgang Lenhard, PhD, Erwin Breitenbach, PhD, and Harald Ebert, PhD, institute of Special Education, Wuerzburg University, Wuerzburg, Germany.

Language matters

2007-06-05T08:04:00.000-04:00

It's official: the term "mental retardation" has been cast aside. Here's the press release from the Association on Intellectual and Developmental Disabilities announcing that its journal is being renamed. The change comes amid concerns that the term "retarded" is widely used as an insult and can rob individuals of their dignity.

From the AAIDD press release:

"After almost five decades of being called Mental Retardation, this influential journal in special education changed names to Intellectual & Developmental Disabilities under the leadership of Editor Steven J. Taylor. The journal's name change is a microcosm of society's ongoing struggle to find a socially acceptable way of addressing persons with an intellectual disability.

"The new name comes close on the heels of the name change of its publisher, the American Association on Intellectual and Developmental Disabilities, formerly AAMR, the world's oldest organization representing professionals in developmental disabilities. For all those who ask, 'What's in a name?' Dr. Taylor says, 'The term intellectual and developmental disabilities is simply less stigmatizing than mental retardation, mental deficiency, feeble- mindedness, idiocy, imbecility, and other terminology we have cast aside over the years.'

The release goes on to quote AAID vice president Steve Eidelman calling for a public awareness campaign to promote positive images of people with intellectual disabilities. His words:

"Without a long-term effort to include everyone and to educate those with negative or neutral attitudes toward our constituents, a change in terminology will become the new pejorative very quickly."

Public man, private father

2007-06-04T07:23:00.001-04:00

Nowadays, pregnant women regardless of age are offered prenatal screening and testing for Down syndrome. That wasn’t the case in 1984 when my daughter Margaret arrived, all blue eyes and strawberry curls. She was just about the biggest surprise my husband and I ever got. We resolved to give her the best start we could and hope for the best.

Fortunately, health care for people with Down syndrome had started to improve, and there was a fresh federal law on the books guaranteeing our daughter the right to a public education. We were relentless in seeking out people who could help.

This fall Margaret will move into her own apartment with a couple of girlfriends. She’s giddy with excitement. Like many parents of young adults, her dad and I are holding our breath.

For years I hadn’t wanted to know too much about what had happened to people with Down syndrome in the years before they began to get education and health care. I feared that their sad historical legacy might dampen my resolve to help Margaret achieve her potential.

But when a friend sent me a note recently saying that Charles de Gaulle, too, had had a daughter with Down syndrome, I had to find out more. Who was she? What was her place in history? And what lessons might her life hold for those of us who have followed in her family’s footsteps?

My quest leads me down a shaded, winding road in France’s jewel-like Chevreuse Valley, near the little country town of Milon-la-Chapelle, just outside Versailles. Embraced by the arms of a mighty oak that is said to represent the great man himself, there stands the elegant Château Vert-Cœur.

The chateau is home to a few dozen souls, some of them refugees taken in by Charles and Yvonne de Gaulle after the Second World War, all of them with intellectual disabilities of one kind or another. I am welcomed by its inhabitants, gracious women with soft hands and kind faces, as well as by members of the de Gaulle family, and by representatives of the foundation that bears the name of Anne de Gaulle.

The general’s nephew Etienne Vendroux roars his approval upon glimpsing the photograph of my children I carry. “Margaret!” he cries. “My grandmother, Madame de Gaulle’s mother, was Marguerite. We have many Margarets in the family.” We laugh at the unexpected bond. My grandmother, too, was called Margaret. My daughter’s middle name is Anne.

An enthusiastic tour of the grounds begins, followed by lunch in a sunlit room. Over champagne, I learn the story of the relationship between one of the world’s most powerful men and his cherished, vulnerable daughter.

___

Scholars from all over the world have long combed the archives for clues into the puzzle that was de Gaulle. How did one young general find the courage to stand alone against the Nazis, breathing life into a dying nation? Even as the Germans marched into Paris in 1940. de Gaulle’s stirring call to arms via a BBC radio broadcast put a thumb in the eye of the would-be conquerors and created the French resistance: “"But has the last word been said? Must hope disappear? Is defeat final? No!”

There are many theories about the roots of de Gaulle’s indomitable resolve, most originating in ideas about a haughty man marked by boundless ambition, an iron will and a passionate allegiance to France’s ancient glories. But for those who knew him in his private moments, some part of the answer to the riddle resides in the influence of a girl who was not like the others.

The general’s youngest child Anne arrived on New Year’s Day, 1928. Her face carried the characteristic signs of Down syndrome, a condition now known to be caused by an extra copy of the 21st chromosome. Adding to the family’s woes, Anne had also experienced birth injuries that left her with motor impairments. Despite the family’s best efforts at teaching her, she would never be able to walk alone.

The news of Anne’s disability devastated her father, a war hero and an officer posted to Trier, Germany, and his wife, the former Yvonne Vendroux. He was a studious and driven young man wedded to the nomadic life of the military; she, the daughter of a Calais businessman, was not yet 28. They already had two other small children, Philippe and Elisabeth.

In the years between the great wars, public awareness of disability was shaped by the ideal of military casualties: brave men bearing injuries with honor in the service of a noble cause. By contrast, Anne’s condition was perceived as a cause for shame and social stigma. The couple concluded that their family life should be kept very private.

The discovery of DNA was still decades off, so scientists had turned to racial stereotypes in an effort to explain what they could not understand. They labeled Anne’s condition “Mongolian idiocy,” reflecting a popular Eurocentric belief that Mongolians occupied a low rung on the evolutionary ladder.

Children like Anne were viewed in that era with superstition and were often wrongly regarded as an indication of degeneracy, venereal disease or alcoholism on the part of their parents. The recent advances in medical care and education that have enhanced the health and welfare of people my daughter’s age were not yet dreamed of. Commonly in Europe between the wars, as in the United States, such children were sent to institutions that offered little more than subsistence living.

Photographs of the young Anne reveal a pretty child with an earnest gaze and a strong resemblance to her mother. The de Gaulles rejected public stereotypes and came to view Anne as a gift, their nephew says, an attitude that may have been rooted in large part in their deep Catholic faith. Though Anne’s speech did not progress beyond the realms of childhood, her unconditional love became the emotional center of the de Gaulle family. Her father described her as “my joy,” adding, “She helped me overcome the failures in all men, and to look beyond them.”

Charles and Yvonne set about trying to create a life in which each of their three children felt accepted and cherished. They insisted that Anne travel with them everywhere – Germany, Lebanon, Algiers. The general sang songs for her and read her stories, displaying an affection and tenderness that he did not readily share with the other members of the household. The family had one rule above all: Anne was never to be made to feel different or less than anyone else.

When the Nazis invaded and the general hastened to London in a desperate effort to spark the resistance effort, Madame de Gaulle embarked upon a resistance of a more personal sort. She saved the lives of all three of her children, driving them and a nurse through the flood of desperate refugees to the last ferry to leave Brest before the Germans arrived.

If Madame de Gaulle thought the journey might be made more perilous by the presence of a 12-year-old girl who was not able to walk alone, her actions did not reflect her fears. “We always had to take Anne, never abandon her. God gave her to us. We keep her,” Anne’s brother Philippe later wrote. “We have to take care of her as she is and wherever she is.”

The family spent the war years with the general in the Hampstead section of London, where he came to know in more detail the full horrors of the Nazi activities. Looking back, I wonder: did he learn then of the Nazi Aktion T4, the eugenic program which systematically exterminated some 200,000 people with physical and intellectual disabilities between 1939 and 1941? Had he known about it earlier? And how, given his very personal commitment to his daughter, might that knowledge have informed and shaped the outrage with which he denied the legitimacy of Vichy?

Although the archives don’t reveal whether the general knew the specifics of T4, there was no mistaking the eugenic winds that were blowing across Europe. In the years before the war, men who later assumed influence under Vichy had been publicly espousing forcible sterilization for “defectives,” a philosophy that fit neatly with Nazi desires for cleansing society of “racially unsound” elements. The implicit attack on Anne and on the de Gaulle family must have been all but unmistakable.

After the war, Charles and Yvonne’s love for their daughter inspired them to create a welcoming home for young women with Trisomy and other intellectual disabilities. Vert-Cœur has been the focus of that effort for almost sixty years, and it still maintains the aura of quiet serenity and protection that first drew the couple to walk its paths.

Management of the foundation today has been passed to the de Gaulles’ nephew and granddaughter, who maintain a discreetly low profile in keeping with family tradition. Although the foundation was originally focused on protection of vulnerable people, in keeping with modern thinking it is now moving more toward integration of people with disabilities throughout society. An expansion is planned in Brittany that will bring young people with disabilities together with their school-age peers.

Still, there are serious questions being raised about the level of acceptance that greets these people in modern France. Ethicists have questioned the essential paradox posed by a society that pledges support for people with disabilities while also providing public funding for the prenatal screening and termination that is believed to eliminate more than 90 percent of fetuses affected by Down syndrome. Within the foundation, there are concerns that these trends represent a shocking social schizophrenia. There is also a new determination to bear witness to the dignity of people like Anne.

In the end, the Man of Destiny who brought hope and life to millions could not do the same for his cherished daughter. Pneumonia overtook her, aggravating her weak heart, and Anne coughed her last in her father’s arms in February of 1948. Her life and death were defined by her era; tragically, the medical techniques we now know might have helped her did not come in time.

As far as her family knows, the brimming de Gaulle archive does not contain any writing by Madame de Gaulle about her daughter. But a letter her husband wrote to Elisabeth shortly after Anne’s death captures the couple’s profound grief: “Her soul has been set free,” he wrote. “But the disappearance of our little suffering child, of our little girl with no hope, has brought us immense pain.”

The self-created man who commanded soldiers and negotiated with great powers on his own terms woke each day with the certain knowledge that there were limits to his authority. Something he had dearly wanted – that his daughter be whole and strong and proud -- had eluded him, but he stood by her nonetheless and did everything within his power to serve her best interests and celebrate her memory.

Late in the afternoon, after hands have been shaken and cheeks kissed, on the ride back to Paris my mind keeps churning. Anne and Margaret. Margaret and Anne. Two extraordinary girls, two eras, two continents. Two lives joined by a common diagnosis. Two loving families who may have wished away their daughters’ impairments, but cherished their girls nonetheless.

Perhaps the general’s fierce devotion to Anne and his courageous resistance to Hitler were unrelated, two coexisting expressions of the ethical and moral sense of a religious and traditional man. But those of us who have been changed by the unconditional love of a person like Anne continue to wonder.

This young woman’s life was a constant reminder of the dignity and value of vulnerable people, a message delivered like an arrow to the heart of one of the twentieth century’s most influential men. I would like to think that Charles de Gaulle may have found in Anne an exhortation to stand up for what is right in the face of overwhelming public ignorance and cruelty. Perhaps, just perhaps, she helped to change the course of history.

Real People, Working

2007-05-29T20:11:00.001-04:00

The shop is called “C’est Bon de Vivre” – “It’s Good to be Alive” – and one visit will convince you of the wisdom of its name. The windows are lined with beautiful hand-stencilled ceramics in pastel hues, and the fact that the windows front on the main street of a little French city called Versailles makes the display all the more delicious. Inside, the shop’s white-smocked artists keep up a merry chatter as they layer on the paint.

It’s the creation of Helene bes de Berc, whose 23-year-old daughter Sophie’s oft-repeated saying provided the shop with its name. Madame de Berc had been eager to find a place where Sophie could work, socialize and connect with her community, but was disappointed in her quest. France has few programs for young adults like Sophie, who has Down syndrome, Madame de Berc said, so she set about to build her own.

The result is a bustling store with a revolving cast of artisans, all of whom have some degree of intellectual disability. Madame de Berc, who trained as an artist before her five children arrived, has conceived of her storefront as a place where young adults can work with paint, ceramics, wood and other media, as well as develop skills in reading, computation and independent living. All the artwork they produce is offered for sale. The shop also takes advance orders for particular items.

“I did it to show that it is possible,” Madame de Berc said, adding that she was eager to demonstrate the competence of Sophie and her peers in the face of a school system that does not devote much attention to students with intellectual disabilities. “It is good for them to do something creative, because they are able to understand and to learn.”

The shop “C’est Bon de Vivre” can be found at 56 Rue d’Anjou, 78000 Versailles. To learn more about their products, contact Helene bes de Berc at +33 (0) 1 39 50 00 74, or email bes_de_berc@wanadoo.fr

More Versailles photos

2007-05-29T08:00:00.000-04:00

PWD* reacts to prenatal screening

2007-05-25T09:35:00.000-04:00

The Washington Post runs letters in response to "Haunting Echoes of Eugenics." Bridget Brown, a woman with Down syndrome, compares widespread prenatal screening and termination with genocide directed toward people with disabilities. Her words:

I have a full and wonderful life, and the world needs to know that I do not "suffer" from Down syndrome. Most people I know with disabilities have full and productive lives. My heart breaks when I think that I might be part of the last generation of people with Down syndrome. The world will never again benefit from our gifts. But I will continue to hold hope for people with disabilities. And I will pray for all the people who think we don't have the right to live.

Ms. Brown's letter goes to the heart of the ethical conundrum surrounding universal prenatal screening, which Michael Sandel powerfully explores in "The Case against Perfection: Ethics in the Age of Genetic Engineering" (just out on Harvard University Press). Is total reproductive choice completely beneficial to society? Ms. Brown's experience doesn't lead her to that conclusion. As a person with a disability* (PWD), she encounters daily the uninformed and negative preconceptions people have about her and the quality and value of her life.

Sandel explores the issues around reproductive choice and views it as a mixed blessing. He worries that individuals who are granted this kind of control over their children will come to be held accountable for their children's perceived flaws. The implication: that those who screen and terminate will come to be seen as "responsible" parents, thus justifying a society that lacks empathy and compassion for the lives of those who differ from accepted norms.

Taken together, the aggregation of our private, individual decisions seems to reflects a deep and undiscussed discomfort with those who are different. The implicit message we seem to be sending is that while ethnic diversity is valued and supported in our society, genetic diversity is not. How comfortable would any of us be explaining that paradox to Ms. Brown?

Further reading on this topic: "Confessions of a 'Genetic Outlaw'", by Elizabeth R. Schlitz, in Business Week, July 20, 2006.
____

It's worth noting: this is not a discussion about Roe v. Wade. It is a discussion about the paucity of informed consent in prenatal screening, and the collective social effects of individual decision-making.

College honors

2007-05-25T09:25:00.000-04:00

So how's it been to attend college classes as a student with a disability? For Andrew Cormeir, who gave one of the student speeches at a Cape Cod Community College honors ceremony this week, the college experience has been a lot like it would be for everybody else. He made friends, worked hard, learned a lot. And if his pervasive developmental disorder slowed him down just a bit, Andrew took it in stride.

"It stinks, I know," he said of his disability with a grin as the audience roared its approval. "It might take me longer to think of things, but when I do I know what I'm thinking about."

Andrew was among scores of students who received certificates from the college's Project Forward Tuesday in a commencement ceremony that could only be described as joyful. Speaker after speaker lauded the group’s spirit, energy and zest for learning. “It’s not hard to be your strongest supporter,” said CCCC President Kathleen Schatzberg, who praised the students’ work in the community. “Your achievements have been enormous.”

It was a day for focusing on abilities, not disabilities, as cap-and-gown-wearing students gave speeches, sang, danced and high-fived their way across the stage to the delight of family, friends and college administrators. Pomp and circumstance gave way to tears when a student group sang “How could anyone ever tell you (you are anything less than beautiful)?” In all, almost 60 students earned recognition for their work in such areas as child care, mass communications, retail and culinary arts.

Project Forward, which serves students from all over the country, is one of a growing number of college programs that are designed to meet the needs of students with significant learning difficulties. Started 19 years ago, the program has grown steadily and will expand to welcome 115 students this fall. It focuses on developing employment skills with the goal of helping students live as independently as possible. This year it placed 67 students in internships with area businesses.

For more information on postsecondary programs for students with disabilities, see Thinkcollege.net.

The paradox of "normal"

2007-05-25T00:31:00.000-04:00

Penn State University professor and author Michael Berube, writing in Toronto’s Globe and Mail, asks whether widespread prenatal screening is a reflection of society’s negative views of people with disabilities.

An excerpt:

“ … as a society and as a species, we still don't seem to know what "normal" really is. We could think of the norm as (a) what's left over when we get rid of all the abnormalities, or (b) nothing more than the statistical mean in a fully inclusive society that incorporates every single one of us into public life to the greatest extent possible.

"I prefer (b) myself, and I think you should too; but I worry that uncritical advocates of prenatal screening are thinking in terms of (a). Which leaves us with a bitter paradox -- that even though we haven't begun to explore the ways in which we could include people with disabilities in our society, we devote precious time and resources to developing better ways of spotting them before they are born."

The whole piece can be accessed here.

What's Lost in Prenatal Testing

2007-05-24T14:23:00.000-04:00

By Patricia E. Bauer
The Washington Post
Sunday, January 14, 2007; B07

She was a fresh-faced young woman with a couple of adorable kids, whiling away an hour in the sandbox at the park near my home. So was I, or so I thought. New in town, I had come to the park in hopes of finding some friends for myself and my little ones.

Her eyes flicked over to where my daughter sat, shovel gripped in a tiny fist, and then traveled quickly away. The remark that followed was directed to the woman next to her, but her voice carried clearly across the playground. "Isn't it a shame," she said, an eyebrow cocked in Margaret's direction, "that everyone doesn't get amnio?"

It's been more than 20 years, but I saw the face of that woman again when I read about the recommendation from the American College of Obstetricians and Gynecologists (ACOG) this month that all pregnant women get prenatal screening for Down syndrome. I worry that universal screening brings us all closer to being like that woman at the sandbox -- uninformed, judgmental and unable to entertain the possibility that people with disabilities have something to offer.

The ACOG news release notes that the recommendations are based on consistent scientific evidence and will allow obstetricians and gynecologists to best meet their patients' needs. Until now, women 35 or older were automatically offered genetic testing for Down syndrome; under the new guidelines, less invasive and earlier screening options will be extended much more broadly.

What's gone undiscussed in the news coverage of the guidelines seems to be a general assumption that reasonable people would want to screen for Down syndrome. And since nothing can be done to mitigate the effects of an extra 21st chromosome in utero, the further assumption is that people would be reasonable to terminate pregnancies that are so diagnosed.

Certainly, these recommendations will have the effect of accelerating a weeding out of fetuses with Down syndrome that is well underway. There's an estimated 85 to 90 percent termination rate among prenatally diagnosed cases of Down syndrome in this country. With universal screening, the number of terminations will rise. Early screening will allow people to terminate earlier in their pregnancies when it's safer and when their medical status may be unapparent to friends and colleagues.

I understand that some people very much want this, but I have to ask: Why? Among the reasons, I believe, is a fundamental societal misperception that the lives of people with intellectual disabilities have no value -- that less able somehow equates to less worthy. Like the woman in the park, we're assigning one trait more importance than all the others and making critical decisions based on that judgment.

In so doing, we're causing a broad social effect. We're embarking on the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.

Much of what people think they know about intellectual disabilities is inaccurate and remains rooted in stigma and opinions that were formed when institutionalization was routine. In fact, this wave of terminations and recommendations comes as people with Down syndrome and other intellectual disabilities are better educated and leading longer, healthier and more productive lives than ever.

Nowhere in the fine print of the ACOG recommendations are these misconceptions or the advances of recent years recognized. Perhaps this is not surprising: OB-GYNs concern themselves primarily with mothers and well babies, not people with intellectual disabilities. But it's frightening, too, when you consider the millions of lives affected by their guidance, explicit or otherwise.

Federally funded research has found that physicians have lower expectations for people with intellectual disabilities than do other professionals. Some 81 percent of medical students polled by Special Olympics in 2005 said that they are "not getting any clinical training" about people with intellectual disabilities. The Hastings Center found that 80 percent of genetics professionals polled said they personally would terminate a pregnancy involving Down syndrome. These are the people advising pregnant women in the harried days when the clock is ticking.

Here's my fervent hope: that calls for universal prenatal screening will be joined by an equally strong call for providing comprehensive information to prospective parents, not just about the tests but also about the rich and rewarding lives that are possible with disabilities. If physicians and genetics professionals are willing to learn from people with disabilities and their families, they can disseminate the nuanced, compassionate message at the core of diversity and human rights: All people have value and dignity and are worthy of celebration.

Plastic shovels no longer captivate Margaret. She's more interested in her school roommates, her part-time job, the Red Sox and, at least recently, wrestling on TV. She knows how to hold an audience and how to bring down the house with a one-liner. And, like most of my relatives, she knows how to be an absolute pill some of the time. Such is life.

That day in the sandbox, I went home and cried. I didn't know what to say. I didn't know whether the woman was right. Today, I know. She was wrong.

An introduction

2007-05-24T13:20:00.000-04:00

When my children were in middle school, they participated in a schoolwide effort called the “Worthwhile Life Project.” The students were assigned to take stock of their lives and their dreams, and to write an essay in which they explained how they planned to use their talents for the benefit of society.

Margaret’s essay was both elegant and direct. She wrote that she had Down syndrome, explained that it is a genetic condition that causes her to learn more slowly than other students, and said she did not think it would stop her from having a worthwhile life. When Margaret presented her essay to the class, she caused a sensation. Some students wept. She was invited to present her work in several other classrooms around the school, with much the same result.

The reporter in me wondered at the time why Margaret’s presentation seemed to elicit so much emotion. In retrospect, I think now that she was challenging the subliminal messages that her classmates were picking up elsewhere. A worthwhile life? How could a person with an intellectual disability have a worthwhile life? And yet there was Margaret advocating for herself and talking about her dreams just like everybody else. It was a powerful statement.

A few years have passed since then, but the need for those powerful statements hasn’t gone away. This spring, the American College of Obstetricians and Gynecologists recommended that all pregnant women regardless of age be offered prenatal screening and testing for Down syndrome.

This recommendation, which is perhaps the perverse unintended consequence of concerns about “wrongful birth” lawsuits and high malpractice insurance rates, seems to me to fuel public fears of disability. It sends an implicit message that people with Down syndrome aren’t capable, don’t have worthwhile lives, and aren’t welcome members of loving families.

In my experience, that’s not an accurate assessment. Thanks to changes in federal law that have opened doors to education and healthcare, people with DS are increasingly finishing high school, working in the community, and enjoying more independence than ever before.

Anybody who has had the pleasure of spending time with Margaret knows that young adults with DS are not heroes or victims but real people trying to live ordinary lives under slightly extraordinary circumstances. Margaret’s got friends, a part-time job, an exercise class, a can-do attitude and a smile that can light up a room. I asked her recently what she thought people need to know about Down syndrome. Here’s her answer: “Tell them it’s not so bad.”

While raising my children, I’ve used my journalistic training in an effort to understand the ways in which our society treats people with disabilities. I've been encouraged by improved access to education and health care; I also know firsthand the frustrations of trying to exercise those legally protected rights.

At the same time, I've been struck by the paradox posed by the new reproductive technologies. While they hold the promise of great medical progress, it must also be said that they will further marginalize a class of people who have historically faced discrimination, social ostracism, stigma and abuse.

With neither a coherent public discussion nor a concerted effort to obtain true informed consent, we seem to be sleepwalking toward a collective intolerance for genetic diversity. Absent as well is a public conversation about the vast sums that will be spent on prenatally diagnosing DS, as compared with the relatively meager amounts currently dedicated to research into medical treatments for people with DS.

Margaret’s girlfriends from elementary and middle school are child-bearing age now. I try to picture them in an obstetrician's examining room, listening to a well-meaning doctor offering a gloomy and outdated vision of the life of a person with DS. What will they think? Will they remember the cute blond girl who shared sandwiches with them at lunch, who dusted them off when they fell on the playground, who loved them? Will they remember her “Worthwhile Life” project?

My husband likes to say that Margaret asks nothing of us except that we change the world. I invite the readers of this blog to contribute to my ongoing exploration, which recognizes the essential contributions of people with disabilities and searches for ways to assure that they are respected and valued.

Down syndrome in lay language

2007-05-24T13:15:00.000-04:00

Down syndrome, also known as Trisomy 21, is a naturally occurring condition in which a person has three copies of the 21st chromosome rather than two copies. It is the most commonly occurring genetic mutation, and the one most frequently diagnosed prenatally. It has no known cause. Although medical research is proceeding, no treatments have yet been developed to improve cognition in people with DS. It is estimated that 350,000 Americans have Down syndrome. In the United States, between 85 and 90 percent of prenatally diagnosed cases of Down syndrome end in abortion.

People with Down syndrome have historically faced discrimination and exclusion, and were regularly institutionalized, imprisoned and involuntarily sterilized well into the 20th century. Until the 1970s, they were routinely denied access to education. They still lack appropriate health care and housing in many cases.

Educational access is now protected by law, and as a consequence people with Down syndrome are increasingly completing high school, embarking on post-secondary study, and living and working semi-independently. Many of the characteristics that were once thought to be endemic to Down syndrome now seem to have been caused by institutionalization and social ostracism.

All of them have unique personalities and interests, as their family members can tell you. Recent studies report that families of people with Down syndrome are affected more positively than negatively. Waiting lists of families wishing to adopt children with Down syndrome are now being reported. (See Lindh, Heidi L., et al., "Characteristics and perspectives of families waiting to adopt a child with Down Syndrome," Genetics in Medicine, April, 2007.)

Down syndrome is characterized by developmental delays that are most often mild to moderate, but occasionally can be more severe. It is impossible to predict the extent of these delays based on prenatal diagnosis or observation of other physical symptoms. People with Down syndrome are at a heightened risk of heart problems, most of them surgically correctible, as well as early onset Alzheimer’s disease and leukemia. They often have recognizable facial characteristics, most notably the epicanthal fold of the upper eyelid that is also common in people of Asian descent.

Historically, the condition now known as Down syndrome was wrongly believed to be a racial degeneration, perhaps caused by disease or alcoholism in the mother. In Victorian England the disorder was labeled “mongolism” by doctor John Langdon Down, reflecting the popular Victorian belief that Mongolians were a lower form of human.

The genetic basis of the condition was discovered by Dr. Jerome Lejeune in Paris in 1959. Dr. Lejeune campaigned unsuccessfully against the use of his discovery for the purpose of prenatal screening and abortion, and called for ongoing scientific research into possible treatments for people with DS. In the years since, prenatal screening and abortion have flourished, while funding for research to treat the cognitive symptoms of people with DS has been meager.

In the 1960s, the British medical journal the Lancet recommended that the name “mongolism” be dropped after receiving a letter from leading geneticists charging that the name was “misleading” and had ”embarrassing” connotations. Subsequently, the World Health Organization dropped references to the term “mongolism” after receiving a complaint from a Mongolian delegate.

While considered offensive, the term is still in use among some medical professionals and appears in some medical texts as well as in the online prenatal guide of Harvard's Brigham and Women's Hospital. “Down syndrome” is the accepted term among professionals in the United States. In France, it is called "Trisomy 21."

The Abortion Debate No One Wants to Have

2007-05-23T20:48:00.000-04:00

Prenatal testing is making your right to abort a disabled child more like "your duty" to abort a disabled child.

By Patricia E. Bauer
The Washington Post
Tuesday, October 18, 2005; Page A25

SANTA MONICA, Calif. -- If it's unacceptable for William Bennett to link abortion even conversationally with a whole class of people (and, of course, it is), why then do we as a society view abortion as justified and unremarkable in the case of another class of people: children with disabilities?

I have struggled with this question almost since our daughter Margaret was born, since she opened her big blue eyes and we got our first inkling that there was a full-fledged person behind them.

Whenever I am out with Margaret, I'm conscious that she represents a group whose ranks are shrinking because of the wide availability of prenatal testing and abortion. I don't know how many pregnancies are terminated because of prenatal diagnoses of Down syndrome, but some studies estimate 80 to 90 percent of those diagnosed prenatally.

Imagine. As Margaret bounces through life, especially out here in the land of the perfect body, I see the way people look at her: curious, surprised, sometimes wary, occasionally disapproving or alarmed. I know that most women of childbearing age that we may encounter have judged her and her cohort, and have found their lives to be not worth living.

To them, Margaret falls into the category of avoidable human suffering. At best, a tragic mistake. At worst, a living embodiment of the pro-life movement. Less than human. A drain on society. That someone I love is regarded this way is unspeakably painful to me.

This view is probably particularly pronounced here in blue-state California, but I keep finding it everywhere, from academia on down. At a dinner party not long ago, I was seated next to the director of an Ivy League ethics program. In answer to another guest's question, he said he believes that prospective parents have a moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability, because it was immoral to subject a child to the kind of suffering he or she would have to endure. (When I started to pipe up about our family's experience, he smiled politely and turned to the lady on his left.)

Margaret does not view her life as unremitting human suffering (although she is annoyed that I haven't bought her an iPod). She's consumed with more important things, like the performance of the Boston Red Sox in the playoffs and the dance she's going to this weekend. Oh sure, she wishes she could learn faster and had better math skills. So do I. But it doesn't ruin our day, much less our lives. It's the negative social attitudes that cause us to suffer.

Many young women, upon meeting us, have asked whether I had "the test." I interpret the question as a get-home-free card. If I say no, they figure, that means I'm a victim of circumstance, and therefore not implicitly repudiating the decision they may make to abort if they think there are disabilities involved. If yes, then it means I'm a right-wing antiabortion nut whose choices aren't relevant to their
lives.

Either way, they win.

In ancient Greece, babies with disabilities were left out in the elements to die. We in America rely on prenatal genetic testing to make our selections in private, but the effect on society is the same.

Margaret's old pediatrician tells me that years ago he used to have a steady stream of patients with Down syndrome. Not anymore. Where did they go, I wonder. On the west side of L.A., they aren't being born anymore, he says.

The irony is that we live in a time when medical advances are profoundly changing what it means to live with disabilities. Years ago, people with Down syndrome often were housed in institutions. Many were in poor health, had limited self-care and social skills, couldn't read, and died young. It was thought that all their problems were unavoidable, caused by their genetic anomaly.

Now it seems clear that these people were limited at least as much by institutionalization, low expectations, lack of education and poor health care as by their DNA. Today people with Down syndrome are living much longer and healthier lives than they did even 20 years ago. Buoyed by the educational reforms of the past quarter-century, they are increasingly finishing high school, living more independently and holding jobs.

That's the rational pitch; here's the emotional one. Margaret is a person and a member of our family. She has my husband's eyes, my hair and my mother-in-law's sense of humor. We love and admire her because of who she is -- feisty and zesty and full of life -- not in spite of it. She enriches our lives. If we might not have chosen to welcome her into our family, given the choice, then that is a statement more about our ignorance than about her inherent worth.

What I don't understand is how we as a society can tacitly write off a whole group of people as having no value. I'd like to think that it's time to put that particular piece of baggage on the table and talk about it, but I'm not optimistic. People want what they want: a perfect baby, a perfect life. To which I say: Good luck. Or maybe, dream on.

And here's one more piece of un-discussable baggage: This question is a small but nonetheless significant part of what's driving the abortion discussion in this country. I have to think that there are many pro-choicers who, while paying obeisance to the rights of people with disabilities, want at the same time to preserve their right to ensure that no one with disabilities will be born into their own families.

The abortion debate is not just about a woman's right to choose whether to have a baby; it's also about a woman's right to choose which baby she wants to have.

Reporting on Disability with Nuance

2007-05-15T09:09:00.000-04:00

Here's a pleasant surprise -- a story from the New York Times about disability that tells the tale with the nuance it deserves. No heroes, no victims, no crocodile tears. It's the story of South Africa's Oscar Pistorius, a paralympics athlete who wants to compete in the Olympics. He's an amputee, and uses carbon fiber blades instead of feet to tear up the track.

A quote:

" ... Pistorius is also a searing talent who has begun erasing the lines between abled and disabled, raising philosophical questions: What should an athlete look like? Where should limits be placed on technology to balance fair play with the right to compete? Would the nature of sport be altered if athletes using artificial limbs could run faster or jump higher than the best athletes using their natural limbs?"

The story uses the lens of disability to broaden the discussion about the perpetual pursuit of athletic advantage. Performance enhancing drugs, adaptive devices, and even self-mutilation get consideration here. The headline sums up the conundrum: "An Amputee Sprinter: Is He Disabled or Too-Abled?"

Margaret's guide to Down syndrome

2007-05-12T13:18:00.000-04:00

Here's Margaret's essay, which she wrote laboriously and with assistance over a period of weeks. She did research, including interviewing her pediatrician. All the opinions expressed are hers, although she did need help figuring out how to get her ideas down on paper.

Margaret's essay came to the attention of the Washington Post health section, and was printed there in in 1999. It is available through the Post archives.

By Margaret Muller

Today I'd like to tell you about Down syndrome. My purpose for talking about this is to be able to say, "Yes, I have Down Syndrome. Sometimes I have to work harder to learn things, but in many ways I am just like everyone else." I would like to tell people that having Down syndrome does not keep me from doing the things I need to do or want to do. I just have to work harder.

Down syndrome is a condition and not a disease. You cannot catch Down syndrome like you can catch a cold or virus. It is something you are just born with--like blond hair and blue eyes. If you have Down syndrome when you are born, you will have it your whole life.

People without Down syndrome have 46 chromosomes, which carry all the genetic information about a person, in each of their cells. People with Down syndrome have one extra chromosome. So a person with Down syndrome has a total of 47 chromosomes in each cell. Doctors and experts are not really sure what causes it, but they say it occurs in about one of every 700 babies. This happens randomly, like flipping a coin or winning the lottery.

Everyone with Down syndrome is a totally unique person. The extra chromosome makes it harder for me to learn. Sometimes I need someone to say, "Settle down and get busy!" Also, it's really easy for me to be stubborn, so I don't mind if you say, "Hey, Margaret, please stop."

Even though I have one extra chromosome, the rest of my chromosomes carry information from generation to generation just like yours. Chromosomes control certain genetic characteristics, like eye color, skin color, height and some abilities like music, art or math.

For example, I get my blue eyes from my father, my fair skin and freckles from my mother, my blond hair from my grandmother, my long thin feet from both my mom and my dad, and my need to wear glasses from both my grandparents and my parents. I like to concentrate on the ways that I am like everyone else.

I am very lucky to be alive today rather than 50 years or even 20 years ago, because back then the doctors and experts believed that people with Down syndrome were not capable of learning. But now we know that people with Down syndrome are capable of doing many different things.

I personally am doing things that some people didn't think I could do. When I was born, somebody told my mom that it was too bad that I was named "Margaret" because I would never even be able to say my name. That person might never have expected that I could win four medals in Special Olympics swimming, be a green belt in karate, cook a pizza, read a novel, run half a mile or get up in front of the class and give a speech! With a lot of hard work and encouragement, I have been able to do all these things.

I am not sad about the fact that I have Down syndrome. It is just part of me. I have a great brother (most of the time), and parents who love me a lot. I have wonderful friends who enjoy hanging out and having fun with me. I have teachers who help me keep on learning new things. I am glad to be a student at Lincoln Middle School, because it is a great school and almost everyone is really nice. Down syndrome has not stopped me from having a worthwhile life.

What's So Funny About Disability? Well . . .

2007-05-11T00:02:00.000-04:00

By PATRICIA E. BAUER

December 11, 2005
The New York Times

SANTA MONICA, Calif. -- WHEN Edward Barbanell was growing up in Florida, he didn't have a quick retort for the kids who would bully him and call him names on the playground. "I just learned to walk away from it," said Mr. Barbanell, an actor who has Down syndrome. "They can call me what they want, but I am not a 'tard."

Now, he knows exactly what he would tell those kids: go see his performance in "The Ringer," a PG-13 comedy directed by Barry Blaustein and produced by the Farrelly brothers' Conundrum Entertainment with the active endorsement of Special Olympics. "This movie will touch people's hearts and give them a sense of hope about what people with intellectual disabilities can do," he said.

For Mr. Barbanell, the Dec. 23 opening of "The Ringer" would seem to represent an important moment in movie history. This film, as no major Hollywood film before, features a substantial number of actors who have intellectual disabilities. They are portraying reasonably competent, genuine characters - not the stereotypical victims, villains and heroes who have most often defined the disability experience in studio movies. And in a particularly striking turnabout, these actors with disabilities are playing comedy, inviting the audience to laugh with them, not at them.

Anxiety persists among some in the disability world that the filmmakers may have something other than their best interests at heart. They worry that the Farrellys' signature bawdy humor, as seen in their blockbuster hits "Dumb and Dumber" and "There's Something About Mary," could exploit and demean people who are already stigmatized, making them again the butt of the joke.

"They're sensitive, but they want to have it both ways, and that's what frustrates me about them," said Kathleen LeBesco, chairwoman of the department of communication arts at Marymount Manhattan College. She recently published a paper on the Farrellys' "contradictions of freakery" in Disability Studies Quarterly.

But Peter Farrelly argues that America needs to understand the inherent humanity of people with intellectual disabilities, and that includes seeing them make jokes, engage in hijinks and dance close to "Full Monty"-style in the shower. "My whole point in making this movie is to make people with mental disabilities accessible, make people know who they are and feel comfortable with them," he said during a recent interview in the brothers' office here.

"If you don't know someone who's mentally challenged, and you meet them, you're afraid of them because you don't know what to expect," he said. "It's not bad. It's just normal. But if you do know them, you're very comfortable."

This is obviously uncharted territory. Nobody really knows how audiences will react to seeing people with intellectual disabilities in a big-screen comedy - this is a considerable step beyond "Life Goes On," the last decade's Down syndrome-centered television dramedy - or whether they will show up in the first place.

Years of conditioning have taught Americans that it's not appropriate to stare at people with intellectual disabilities, much less to laugh at them. But what if a movie goes over adults' heads and appeals directly to teenagers?

And is it even remotely possible for these actors to pry open doors in the entertainment world so that others in their cohort may follow, as Bill (Bojangles) Robinson and Hattie McDaniel did for African-American performers in the 1930's?

These are the kinds of questions that have been floating around ever since Peter Farrelly and his brother, Bobby, received a pitch from Ricky Blitt, a writer from television's iconoclastic "Family Guy." His script idea had a simple, if explosive, premise: a guy fakes a mental disability in an effort to rig the Special Olympics.

More than five years ago, 20th Century Fox agreed to bankroll the $15 million project, but only if the brothers could secure the unqualified endorsement of Special Olympics. It was not an easy process. After an initial positive response from the Special Olympics president (and now chairman), Timothy P. Shriver, the Farrellys spent a couple of years in negotiation. They pared out some situations (a strip club) and some language (that can't be printed here). Dialogue was scrubbed. ("Mentally challenged" and "intellectual disabilities" were in. "Mentally retarded" was out, except in special circumstances.) There were arguments. During production, a Special Olympics representative stayed on the set to make sure nothing untoward slipped in.

The resulting film stars Johnny Knoxville, best known as the star of MTV's gross and dangerous stunt series, "Jackass," as the anti-hero. It would not be giving away too much of the plot to reveal that he is befriended by disabled athletes whom he comes to admire, and that he sternly admonishes another character who labels his new friends " 'tards," a variant on the widely used playground insult "retard."

The hope is that Mr. Knoxville's high-octane persona will draw in the adolescent boys whom Mr. Shriver sees as susceptible to an attitude transformation. "We're taking a risk with humor that might be edgy, and language like 'retard' that might be offensive," said Mr. Shriver, who is executive producer of "The Ringer." "I think it's time to zing it and zap it and make it go away."

Supporting Mr. Knoxville are five actors with intellectual disabilities in speaking roles, including Mr. Barbanell as Mr. Knoxville's wisecracking roommate, and Leonard Flowers, a hunky Special Olympics athlete who has earned two gold medals in worldwide tennis competition and was immortalized on a Wheaties box. An additional 150 Special Olympics athletes are featured as extras, and the film includes scenes in which an out-of-shape Mr. Knoxville struggles to keep pace with them.

The soundtrack also includes some tracks from the Kids of Widney High, a band composed of students from a special education school in Los Angeles. Their big number? What else: "Respect."

Attitude research recently conducted by the Center for Social Development and Education at the University of Massachusetts Boston underscores the band members' implicit message: they could definitely use a little respect. A national survey of 6,000 middle school students found that young people consistently underestimate the abilities of peers who have intellectual disabilities. In addition, the survey found that 67 percent of young people surveyed would not spend time with a student with an intellectual disability if given a choice, and almost 50 percent would not sit next to one on a school bus.

These findings come 30 years after landmark federal legislation opened the schoolhouse doors to students with disabilities, granting them the right to a public education alongside their peers. Although these students have now been educated in public schools for more than a generation, are performing at higher levels than ever before and are increasingly graduating from high school, they still face substantial stigmas.

Research financed by Special Olympics suggests that negative stereotypes in movies, television and newspapers are a big part of the problem. Another recent study, financed by the Screen Actors Guild and performed by the National Arts and Disability Center at the University of California, Los Angeles, reported that people with disabilities remain "virtually invisible" in American film and television.

That is certainly not the case in the world of the Farrellys, whose comedies use disability as a paradigm to explore life's quirkiness. Actors with real-life disabilities appear in virtually every film, both in featured and incidental roles, to the extent that it is often difficult to tell exactly who is disabled and who isn't.

"We have used a lot of disabled people in our movies, and I'm not exactly sure why," Peter Farrelly said. "I know one reason is I happen to know a lot of disabled people. I am amazed more people don't."

Among those he knows best is his childhood friend Danny Murphy. One summer day in 1974, when the two young men sailed with friends to a familiar spot in Oak Bluffs Harbor on Martha's Vineyard, Mr. Farrelly climbed onto a piling and prepared to dive into the water. Mr. Murphy waved him off, took his place and dove in himself. He struck a hidden silt mound and broke his neck. The injury left him a quadriplegic.

YEARS later, when the first Farrelly film came out, Mr. Murphy asked sharply why it didn't include anyone in a wheelchair. "I'll never forget Pete's face," Mr. Murphy said. "It was as if I had just told him that his parents had died."

WHEN the next movie came around, Mr. Farrelly invited Mr. Murphy to appear. In "Kingpin," he played the bad guy who flipped the switch to chop the bowler's hand off, and he has appeared in virtually every Farrelly film since.

Another recognizable Farrelly star is Rene Kirby, an actor with spina bifida whose self-deprecating and humorous performance provides much of the heart of "Shallow Hal." "When I meet a guy like that, I feel so blessed to come across such a spirit," said Mr. Farrelly, who grew up in a Roman Catholic household. "It makes you feel small. It just makes me want to put him in the movie. And it's not just any exploitative thing. It's not like, you know, this will be odd. It's just that I'm impressed with a guy like that, and I want to put that spirit on-screen."

Then there's Ray (Rocket) Valliere in "Stuck on You," the intellectually disabled waiter who works in the twins' hamburger joint and provides a comic foil for the film's stars. Scores of other people with disabilities turn up in Farrelly films where you don't expect them, or may not even know they are there - an amputee and a woman with a mobility impairment who play casting agents in "Stuck on You," for instance.

Of course, it is true that Farrelly films have won many laughs at the expense of high-priced actors in disability drag. In addition to "Dumb and Dumber," think of Woody Harrelson as "Kingpin's" handless bowler, and Jim Carrey as a man with a split personality in "Me, Myself and Irene," a film that the National Alliance on Mental Illness accused of stigmatizing schizophrenia.

(In the Farrellys' office, a California Media Access award recognizing the brothers' "lifetime commitment to the advancement and inclusion of people with disabilities in the media industry" is displayed. The office, which is wheelchair accessible, also contains two life-size sculptures of the human buttocks and vestigial tail that were a key plot point in "Shallow Hal.")

Still, Farrelly films have consistently tried to portray disabilities in a normalized and sympathetic fashion, free of inflated admiration, condescension and crocodile tears.

The conjoined twins in "Stuck on You" are a couple of sensitive, regular guys whose disability proves to be both a hindrance and a help. The main character in "Hal" learns that his true love's disability, morbid obesity, should not keep him from appreciating her beautiful inner self. And in "Mary," the audience is cued to assess the fundamental goodness of characters by judging how they relate to Mary's disabled brother.

This time around, the Special Olympics' Mr. Shriver is hoping the conundrum posed by the Farrellys' comic touch is irreverent enough to appeal to the target teenage demographic but not so blatant as to alienate the general public or the organization's traditional supporters. It's a delicate balance, and the stress occasionally shows. "I haven't gotten a lot of hate mail in this job," he joked. "That may change."