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.

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.”

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.

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.

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 any more. 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.