Stand Tall

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.

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

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?”

Special education = costly education

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

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.

Disability = Taboo

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.

Planned Kevorkian speech draws protests

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."

To headline writers: Two thumbs down

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.

The Zeitgeist

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

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.

Kuwaitis reported biased against Down syndrome

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.

Parallels between sex-selective abortions and selective terminations

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.

Unkind words wound people with disabilities and their caregivers

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.)

A Tale of Two Daniels

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 ….

…. 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.

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

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."

Michigan woman with DS killed in apparent murder-suicide

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

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.

Prenatal diagnosis and perceptions of bias

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

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."

What's Lost in Prenatal Testing

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.