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.

Prenatal screening panic

Dear Pat,

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

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

What can we tell her?

Claudia
______

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

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

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

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

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

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

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

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

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

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

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

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

Says Obasogie:

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

States get dismal report cards on special ed

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

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

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

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

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

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

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

When asked if he would screen embryos for factors like hair colour, he said: "If there is a cosmetic aspect to an individual case I would assess it on its merits.

"[Hair colour] can be a cause of bullying which can lead to suicide. With the agreement of the HFEA, I would do it. If a parent suffered from asthma, and it was possible to detect the genetic factor for this, I would do it. It all depends on the family's distress."

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

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

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

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

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

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

Now that's productive.

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

Michigan woman with DS killed in apparent murder-suicide

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.

Guaranteed to give you a headache

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

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

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

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

Nuts. Is that the legal term in Rhode Island?

Still more on the "pillow angel" saga

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

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

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

Her words:

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

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

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

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

Real jobs for real people, take 2

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

Here's what Walt had to say:

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

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

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

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

Secret pacts a problem for special ed

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

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

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

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

More unintended consequences of prenatal diagnosis

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

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

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

More text from the article:

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

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

Prenatal diagnosis and perceptions of bias

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."

Public man, private father

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

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

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

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

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

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

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

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

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

___


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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