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Archive for May, 2007

Real People, Working

Tuesday, May 29th, 2007

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

Tuesday, May 29th, 2007

PWD* reacts to prenatal screening

Friday, May 25th, 2007

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

Friday, May 25th, 2007

disability news and commentary, Cape Cod Community College, Project Forward graduationSo 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’

Friday, May 25th, 2007

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.

PB column: What’s Lost in Prenatal Testing

Thursday, May 24th, 2007

By Patricia E. Bauer

The Washington Post

Sunday, January 14, 2007;


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.

Beginning the blog

Thursday, May 24th, 2007

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.

About the Site

More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

Join journalist Patricia E. Bauer as she seeks to bring you the best information about what's happening now and what it may mean for you and your loved ones.

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