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.

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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.