As a reporter and editor at the Washington Post, the Los Angeles Times and elsewhere, I met with presidents and governors, senators and congressional leaders, and more celebrities than I'd like to think about. All those experiences taught me to think for myself, to observe closely, and to question conventional wisdom.
But none of the people I met in my journalistic travels has influenced me nearly as much as my daughter, Margaret. It has been my privilege to spend 23 years in the joyful company of someone whose life many people think should have been prevented. My journey with her has taught me to question just about everything.
Here's a glimpse from our travels. A few years ago, at a dinner party in Los Angeles, I found myself seated next to the head of an Ivy League ethics institute. After the usual pleasantries, I asked him about his research. And so he told me, over the soup course, that he was writing in the area of genetics. He felt prospective parents have a moral obligation to terminate fetuses with disabilities in order to avoid human suffering.
It was all I could do to keep from dropping my spoon. This man didn't know it, of course, but what I heard him saying in effect was that my daughter should never have existed—that my husband and I had a moral obligation to eliminate her before she messed up everyone's lives, and we blew it.
When I managed to collect myself, I said as gently as I could that my daughter had Down syndrome and that she was a source of delight to us all. I also managed to say she wasn't “suffering” any more than anyone else, as near as I could tell, and was doing just fine in her neighborhood public school.
What surprised me even more than his initial comment was what came next. The gentleman smiled quizzically at me, as though the words “loony fringe” had crept across my forehead. He changed the subject. And he suddenly began an animated conversation with the person to his left. He had concluded that there was nothing for us to talk about.
It was then that I began to see what had been happening behind closed doors during the years that my daughter had been faithfully doing her homework, singing in the school chorus, and going to Girl Scout meetings. Somehow, while we weren't paying attention, a large and profitable industry had grown up around prenatal testing, shaping public attitudes toward disability and reinforcing the notion that people like Margaret shouldn't be among us.
All this came to mind again in January 2007 when the American College of Obstetricians and Gynecologists (ACOG) released its recommendation that all pregnant women regardless of age should be offered prenatal screening for Down syndrome. (Subsequently, in December 2007, ACOG recommended that amniocentesis and chorionic villus sampling should be available to all pregnant women.)
We must assume, because there's no in utero cure for Down syndrome, that the primary purpose of all this screening is to facilitate early termination. Clearly, this is the way the public has reacted. It is estimated that 85% to 90% of pregnancies in which Down syndrome is diagnosed end in abortion.
To me, it is more than ironic—it's tragic, really—that the historical moment in which science has become really proficient in detecting Down syndrome prenatally is exactly the moment in which those who have intellectual disabilities have begun to benefit from political and social forces like early educational intervention, inclusion, improved health care, and better educational opportunities and are doing better than ever before.
Unlike many of you, perhaps, I've been blessed to have had a couple of decades to observe people who have intellectual disabilities closely as they move from infancy to toddler to teen to adult. And what I can tell you is that people with Down syndrome are in most fundamental ways more like everyone else than they are different.
Consider this excerpt from the article “What I Wish I Knew Then: Reflections From Personal Experiences in Counseling About Down Syndrome” (Brasington, 2007), which was written by a genetics counselor and published in the Journal of Genetic Counseling.
From getting to know many people with Down syndrome, I've learned they are not so different at all. They want what we all want—love, acceptance, respect, dignity.
Adults with Down syndrome are achieving more than ever before. With a lifespan now reaching into the 60s, people with Down syndrome are dreaming big dreams. More and more are finishing high school and moving on to secondary education. They are moving out of sheltered workshops and working real jobs for real pay.
They have friends, boyfriends and girlfriends, and even get married. They enjoy music, movies, reading sports, hobbies and church. They enjoy volunteering and having the opportunity to give back to others.
They want and enjoy the same things as you and I. What makes their lives difficult are the attitudes of others, not Down syndrome! (italics in original, p. 734)
Those attitudes that Brasington refers to, which are perpetuated and amplified by the ACOG recommendations, are the fallout of years of stigma and low expectations, holdovers from the bad old days when our society did not give people like these any kind of support.
Let's go back and remember what life was like when science first embarked on the development of prenatal tests for Down syndrome. Well into the second half of the 20th century, doctors didn't think these individuals were capable of learning. Many physicians opposed giving them medical treatment on the grounds that it would be cruel to raise parents' hopes. In withholding standard medical treatment, some said it was kind to “let” them die.
It was routinely recommended that children with disabilities be sent to institutions. In that atmosphere, parents could perhaps be excused if they believed the advice they were getting, and they sent their kids off by the hundreds of thousands. The institutions that housed them, it later became clear, were warehouses at best and abusive at worst. It is perhaps impossible for us today to imagine the dire consequences that befell these vulnerable children, who were deprived of education, medical care, emotional stability, and psychological support.
Things began to change for the better in the 1970s, when public outrage led to the closing of many institutions. In 1975, for the very first time in the United States, people with disabilities were granted a federally protected right to a public education. Yet, it took many more years before public schools had programs for them. Gradually, children with Down syndrome began to be allowed to attend school in their home communities and to achieve alongside their nondisabled peers.
Gradually, too, doctors began to give individuals with disabilities the medical care that had been routinely denied earlier. In the 1980s, in response to public outcry over what were called the “Baby Doe” cases, the federal government issued rules requiring federally funded hospitals to grant children with disabilities the same access to health care that everyone else enjoyed. Over the past 25 years, the life expectancies of people with Down syndrome have more than doubled.
These were giant steps for a historically stigmatized population, but they occurred largely out of the view of the public and, more importantly, the medical community.
Doctors now get training on the various prenatal testing and screening modalities, but they still are taught little if anything about the lives and possibilities of people who have the conditions that are being screened. A recent survey (Special Olympics, 2005, p. 4) of medical students found that about 81% reported that they were “not getting any clinical training” about people with intellectual disabilities.
Textbooks reduce the lives of people with Down syndrome to a crisp list of possible medical complications and symptoms, often accompanied by homely, lifeless photographs in which people are presented as little more than laboratory specimens. It's not surprising that when prospective parents receive information in this way, they feel as though they're being told that they've got the plague.
More than anything else, these lists carry a strong message that people with Down syndrome aren't exactly human but just constellations of symptoms and problems. Where is there room in such a list to report the joys as well as challenges, or to note that a person with Down syndrome can delight their family, make a pizza, read a book, drive a car, play a violin, graduate from high school, or execute a figure 8 on ice skates?
Yet I know people who have done all those things and more. For example, 28-year-old Karen Gaffney (who has Down syndrome) recently swam 9 miles across Lake Tahoe in water that measured 59 degrees; her purpose was to raise awareness about what people with Down syndrome can do.
Sadly, that awareness rarely gets through to pregnant couples. I've perused What to Expect When You're Expecting (Murkoff, Eisenberg, & Hathaway, 2002), the bestselling pregnancy book. I've scoured the pregnancy bookshelf at my local bookstore. Here's what I found: pages and pages about the tests but nothing at all about the lives of people with Down syndrome.
A recent study in the journal Pediatrics found that many physicians were ill-equipped to deliver news about a Down syndrome diagnosis and were using pessimistic, biased language. The author recommended that physicians familiarize themselves with current and accurate information so that it can be shared with prospective parents (Skotko, 2005). Another study (Cleary-Goldman et al., 2006) found that only 55% of the doctors surveyed felt they had received adequate training on prenatal diagnosis. Yet when ACOG released its recommendations, nothing was included that might help doctors with this very important task.
What's to be done? First, I'd like to offer a few suggestions for individual doctors, and then some thoughts about the ACOG (2007) guidelines in the context of public policy.
What Physicians Can Do
These are extraordinarily difficult times for people working in the field of obstetrics. Technology is changing at an unprecedented rate, and malpractice litigation and insurance rates are at record high levels. Doctors always have too much to do in too little time, and there's always the possibility of a lawsuit over a delivery that someone might consider to be less than a “good outcome.”
At the same time, there is much that doctors can do to reform the testing process, reducing women's stress, and lessening the risk of stigma against people with Down syndrome and other genetic differences.
1. Physicians should encourage couples to explore their personal beliefs about issues such as when life begins and what the value is of people with diverse gifts and needs before asking about screening. Women need to know that a conversation about screening results may well wind up as a conversation about termination, and they need to decide whether that's somewhere they want to go.
2. Physicians should make clear the risks, benefits, and limitations of the screens and tests. It should be made clear that the purpose of the tests is not to offer reassurance—as some doctors say— but rather to identify genetic and developmental differences in fetuses.
3. Physicians should provide accurate, current information about people with Down syndrome before asking prospective parents whether they wish to screen, while people are calm and can absorb information. All discussions about Down syndrome, as well as other disabilities, should be conducted in people-first language. I cringe whenever I hear the phrase “Down's child.” It conveys the powerful and inaccurate message that the diagnosis is more important than the person who bears it. Using people-first language puts the person before the disability and describes what a person has, not who a person is.
4. Physicians should avoid outdated, stigmatizing, and pitying language. For example, the word mongolism is considered by many to be racist and insulting. Don't tell parents you're “sorry,” or that Down syndrome is a “bad outcome.” While Down syndrome might be unexpected, it is also a naturally occurring and nonlethal genetic difference that does not limit the ability of individuals to lead happy, rewarding, and productive lives.
5. Physicians should support and respect every woman's right to choose whether to be screened and whether to continue a particular pregnancy. It's equally important, once a woman has made her decision, that she not be asked repeatedly to revisit the question. Women tell me they feel badgered and bullied when this occurs, and they resent it. They tell me that doctors have refused to deliver their babies if they decline the screening. This is certainly not informed consent. It's coercion. And it's not right.
6. Physicians delivering an unexpected diagnosis should refer parents to the real experts—other parents—through local support groups and should provide resources from national Down syndrome organizations.
7. Physicians should reexamine their own beliefs on the subject of disability and realize that less able does not mean less worthy. We've gotten so captivated with the concept of “normal” in our society that we've slipped, without thinking, into the idea that people who aren't normal are somehow suffering. (In our family, we joke about how we ought to have a photo album of Margaret suffering with her friends—at the beach, at the prom, at the ball game, at the mall).
ACOG Guidelines and Public Policy
At a time when the Americans with Disabilities Act provides greater protections than ever before to people with disabilities, the ACOG (2007) guidelines seem to be carrying a different message. While racial, cultural, and ethnic diversity are valued and supported in our society, the guidelines suggest that genetic diversity is not. Be wary, these guidelines advise the consumer. Be on your guard. The unspoken yet clear message of the guidelines is that a life lived with a disability is to be prevented, not supported.
This attitude has a way of rubbing off on real people. Nowadays, many parents of children with genetic disabilities may well feel judged or blamed, as others confront them with accusations that the birth of their child could have been avoided if parents had exercised a different “choice” (Lenhard et al., 2007; Sandel, 2006).
This pernicious attitude rubs off not only on the families of the people with disabilities but on everyone who may eventually become disabled, which, as I get older, increasingly looks like every single one of us. Are we the “temporarily able-bodied,” willing to accept an “I've-got-mine” world in which we can neither seek nor receive help on the inevitable day when we ourselves become vulnerable?
To me, it boils down to what kind of country I'd like to live in: one that celebrates everyone's gifts, shares responsibility for vulnerable individuals, and offers respect for all. And so I'm offended by the presumption—on its way to becoming a legal presumption—that certain kinds of people, with certain kinds of characteristics, are no longer welcome.
Somehow, with nothing but the best of intentions, our society has failed to notice that we are sleepwalking toward the elimination of an entire class of people: vulnerable people who have a history of oppression, discrimination, and exclusion.
Childbearing and prenatal diagnosis are fundamentally about the most poignant of human desires—to leave behind us some idealized vision of our highest and best self. In years past, we all had to rely on luck, eat our spinach, and hope for the best.
For today's young parents, reality is a lot more complex. I don't envy them the responsibilities and worries they carry. They worry about money. They worry about fitting in. In the obstetrician's office, they trade their worries for the illusion that at least parenthood is something they can control. (Of course, any parent who has ever handed the car keys to a teenager knows the folly of that thought.)
With the encouragement of technology, young couples are asked to make a choice. And so they choose among the things they can see: a chromosome here, a nucchal fold there, always reaching for that brass ring—normal! The trouble is, there is so much that doesn't show up on a diagnostician's report: wit and charm, kindness and grit, sparkle, creativity, and hope. How is it possible for a couple to make a truly informed decision when they haven't been informed about the lives of those they've been taught to fear?
Their fear, it seems to me, has in large part been fostered by the wrongheaded economics of a system that spends huge amounts annually to root out genetic differences while basic research to document and improve the lives of people with genetic diseases goes begging. Researchers at Stanford University and elsewhere tell us there is promise in research that could improve the cognitive functioning of people with Down syndrome, but research funds are down to a trickle. A pragmatist would say there's nothing surprising here. Prenatal testing brings big revenues, and with them, profits; research doesn't.
I believe we should start a national dialogue in which the medical profession rededicates itself to the ideal of true informed consent. We need comprehensive research to gather information about the lives and outcomes of people with Down syndrome and their families, so that physicians can be confident in the knowledge that the data they share with women are both current and accurate. That research should begin promptly and should be designed with the full participation of people with Down syndrome, their families, and advocates.
We need training for physicians about how to deliver unexpected diagnoses. We need well-produced informational materials about Down syndrome to be distributed to women and their partners. Again, these materials should be designed with the active participation of the people with Down syndrome, their families, and advocates.
Last, we need industrywide standards for the presentation of diagnostic modalities so that patients are fully informed about the strengths and limitations of the tests—and about the lives of people with the potential diagnoses—before they are asked whether they wish to be tested.
If all women are to be offered prenatal screening and testing, then those offers must take place as part of a coordinated, industrywide process that offers full and complete information, is respectful of all parties involved, and honors the true spirit of informed consent in the absence of coercion.
I started off today by remembering my conversation with that professor of the ivy league ethics school, who has a list of degrees as long as your arm. But there's one degree he doesn't have, and that's a degree from the University of Margaret.
After more than 2 decades of intensive study, my husband and I may be close to earning a passing grade:
We have learned that no child is normal, and neither are we;
We have learned that it is possible to have a happy, thriving, loving family with a child who is not the same as everybody else's; and
We have learned that we, like all parents, need to get over the notion of our children meeting some arbitrary standard of perfection that we couldn't possible achieve ourselves.
Along the way, Margaret has also helped us learn some essential truths about 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.
I'd like to close with a message from Margaret. I asked her what I should tell you about Down syndrome, and here's what she said, with a shrug and a smile: “Tell them it's not so bad.”
These remarks were delivered at a general session of the fall conference of the American College of Osteopathic Obstetricians and Gynecologists, St. Louis, Missouri, September 27, 2007.
Author: Patricia E. Bauer (firstname.lastname@example.org, PatriciaEBauer.com), P.O. Box 191545, Atlanta, GA 31119