Archives for October 2012

The legacy of Charles and Anne de Gaulle

Anne and Charles de Gaulle

In just a few days – November 9, to be exact – it will be the 42nd anniversary of the death of former French President Charles de Gaulle.  The “Man of Destiny,” as Winston Churchill called him, is revered in his homeland for rallying the Free French Forces after Nazi Germany took over France in 1940.

De Gaulle is considered one of the great French leaders in history. But he has been reviled outside of France for being arrogant, autocratic and unreasonable in his dealings with other countries.

Indeed, he was a complex man. What is little known about him is the depth of his character and his capacity for love and tenderness. He didn’t show these qualities to many people, but he showered them on his youngest daughter Anne, who had Down Syndrome.

He sang songs to her and read her stories. He called her “my joy” and said, “She helped me overcome the failures in all men and to look beyond them.”

Veil of secrecy

De Gaulle and his wife Yvonne did not reveal publicly that their daughter, born in 1928, had intellectual and physical disabilities. In fact, there is very little evidence of Anne’s disability in the French archives that chronicle de Gaulle’s life.  Their silence no doubt was related to the eugenics movement that was sweeping Europe and the United States at the time and the shame involved in having a “defective” in the family.

Despite their insistence on secrecy, Anne was not sent away to an institution. She lived her entire life with her family. And even though she had difficulty walking, she traveled extensively with her parents.

One of the few mentions of her and her condition is contained in a letter de Gaulle wrote his other daughter Elisabeth after Anne died of pneumonia in 1948.

“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.”

Anne’s lasting influence

Anne de Gaulle’s legacy lives on. After her death, Yvonne and Charles created a foundation in her honor and established a hospital for girls with intellectual disabilities. The hospital is in a beautiful chateau near Versailles.

Chateau de Vert Coeur

Today, Anne de Gaulle’s foundation is run by Etienne Ventroux, the de Gaulles’ nephew, and a granddaughter.  In keeping with the times, they are focusing less on institutionalization and more on integration of people with disabilities.

In 1962, de Gaulle reported that he had been saved from an assassin’s bullet by the frame of a picture of Anne. The picture, which de Gaulle always carried with him, had been resting on a shelf underneath the rear windshield of a car that was hit by machine gun fire in Paris.

I continue to be amazed at the number of people – including the famous and powerful — who have first-hand experience with intellectual disabilities. Charles de Gaulle’s story, even though fraught with pain and grief, is nevertheless hopeful. It has a more positive outcome than many others from that era.

I am hopeful that in the 21st century, with the focus on inclusion and possibilities, with greater understanding and less fear and shame, that there will be too many stories to count of positive outcomes for people like Anne.

Dancing in heaven

At one point in my work on the book on Uncle Melrose, I was using a working title of “Dancing in Heaven.” That’s because I fantasize that my deceased uncle, who had a profound intellectual disability and severe physical limitations, is now dancing and talking with abandon.

I imagine these things because he could do neither when he was living at a state school or a group home or when I took him on outings. He could only say a few words and he was so bent with scoliosis that he could barely walk. He was hugely frustrated that he couldn’t do more.

Later in his life when I knew him, he let me know he was frustrated by shouting “No!” and stomping his foot in protest. But those incidents were the exceptions. Mostly, he liked to hug people and go for rides in the car. He liked to go to McDonald’s and eat hamburgers and he just liked hanging out with me and doing nothing.

A better way

I thought of my uncle when I read Dr. Dennis McGuire’s article on “If People With Down Syndrome Ruled the World.”  As Dr. McGuire points out, if we lived in such a world, there would be more dancing and more hugging.

And there would be more order. Doors and cabinets left ajar would be closed. The trash would be emptied regularly and chairs that were not in their proper place under the dining table would be adjusted. People like Uncle Melrose* would make sure of these things.

After getting to know my Uncle Melrose and spending time with him, I’m positive the world would be a better place if people like him were in charge.

*Uncle Melrose did not have Down Syndrome, but he exhibited many of the loving qualities of the people described in Dr. McGuire’s article.

Carrie Buck — victim and pawn

Today, October 19, is an extremely important day in the history of intellectual disabilities in this country. Today is the 85th anniversary of the sterilization of Carrie Buck, a young Virginia woman who was deemed mentally deficient and who had given birth to an illegitimate daughter.

Carrie Buck*

Carrie, who was 17, had been committed to the Virginia Colony for the Epileptic and Feebleminded after her foster parents learned she was pregnant. Seeking to avoid the shame of her condition, they sent her to the institution where her mother lived.

Officials at the Virginia Colony claimed that both Carrie and her mother Emma were mentally deficient and because of their feeblemindedness, were likely to be promiscuous. They claimed that Carrie was illegitimate and she was passing on the trait by having her own out-of-wedlock daughter. After little Vivian was born, she was taken from her mother and sent to live with Carrie’s former foster parents.

Carrie Buck was a test case

The Colony’s leaders decided that Carrie Buck’s case was a perfect one to test the legality of a new sterilization law that had been passed by the Virginia General Assembly.  Doctors at the colony had been secretly sterilizing residents before passage of the law and they reasoned that a court case would give them stronger legal backing. And so the infamous case of Buck v. Bell was established.

It wasn’t much of a fight. Carrie was represented by Irving Whitehead, a former board member of the colony. He put on no defense for his client. The case was prosecuted by Aubrey Strode, who wrote Virginia’s sterilization law.

During the trial, Carrie and her mother were described as part of the “shiftless, ignorant, and worthless class of anti-social whites of the South.”  Witnesses said Emma Buck had syphilis because she was a moral degenerate. One of Carrie’s teachers testified that she sent flirtatious notes to schoolboys, evidence that she was just as promiscuous as her mother. And Carrie’s baby was described by a nurse who examined her as having a look “that is not quite normal.”

U.S. Supreme Court weighs in

Predictably, the court gave the go-ahead for Carrie’s sterilization. But the case was appealed up the line to the U.S. Supreme Court.  In upholding the law in the majority opinion, Justice Oliver Wendell Holmes wrote the famous words:  “Three generations of imbeciles are enough.”

And so, on Oct. 19, 1927, Carrie Buck was sterilized at the Virginia Colony and later released. In the decades since, some hidden truths have emerged about her case.

The truth

First, Carrie was not illegitimate; her mother was legally married to Carrie’s father. Their marriage certificate was produced after the case concluded.

Second, neither Emma, Carrie nor Vivian was intellectually disabled. Carrie made satisfactory grades in school and Vivian made the honor roll. Emma was sent to the colony because she was a widow and had no one to take care of her.

And finally, Carrie became pregnant because she was raped by a member of her foster parents’ family.

A total of 33 states passed sterilization laws and because of the Supreme Court ruling on Buck v. Bell, more than 60,000 people were involuntarily sterilized nationwide. Most of them were living in institutions.

After World War II, revelations of the Nazi racial purification programs emerged, as did news that they were based on eugenical sterilization laws drafted in the United States. As a result, enthusiasm for forced sterilization declined in the U.S. Although Buck v. Bell has never been overturned, most states have either repealed their sterilization laws or the practice has ceased.

*Photo courtesy of the Journal of Heredity

Silence doesn’t always mean secrecy

I have often pondered the secrecy that seemed to surround the existence of my Uncle Melrose, who had a profound intellectual disability. No one in my family ever talked about him – not my Dad or my other aunt and uncles or my grandfather.

As I have learned in the past few years, my family was not unique. The same veil of silence seemed to affect many other families who had a member with a disability in the early to mid-20th century.

Surely, I thought, a certain amount of shame was behind the attitude of my father and his relatives. And that was understandable, given that Uncle Melrose was born in an era when people like him were considered a menace to society. It was generally accepted that people with intellectual limitations were born of bad stock and would either be a societal leach, a criminal or a prostitute.

Out of sight, out of mind

It was widely believed that people with intellectual disabilities were a danger to society and vice versa. Steps must be taken to protect one group from the other. That’s why institutions were built in remote areas – to remove the disabled from the mainstream.

To keep the population of the “feebleminded” under control, there was widespread support for the eugenics movement. Sterilization laws were passed in many states and tens of thousands of people – most of them in institutions – were rendered incapable of reproducing.

Many people – including the highly educated – believed that if a person was born with an intellectual disability, it was retribution for some sin by the parents.  Perhaps the father was a womanizer or the mother had taken to drink.

No other options

When I consider these things, I think it’s a miracle that Dad’s family kept Uncle Melrose at home until he was 15 years old. It was only when the family couldn’t handle my uncle’s explosive outbursts of frustration any longer that they placed him in a state school in Texas.

That must have been unbelievably painful for all of them, including Melrose. I know it was for my dad, who expressed outrage to his parents for their decision.

Help from Pearl Buck

Pearl Buck

When you look at the whole story, it is easy to see why my uncle seemed to be a family secret. But there is one other factor that I had overlooked until I read The Child Who Never Grew, by Pearl Buck. When the book was published in 1950, Buck revealed that she had a daughter with an intellectual disability.

Her daughter Carol was someone she had not been able to acknowledge even though she had raised her for several years before placing her in an institution. When Buck’s  award-winning novel The Good Earth was published, the public was naturally curious about the author. But Mrs. Buck could not talk about Carol. The reason, she said, was “not shame at all but something private and sacred, as sorrow must be. I am sore to the touch there and I cannot endure even the touch of sympathy.

“Silence is best and far the easiest for me. I suppose this is because I am not resigned and never can be. I endure it because I must, but I am not resigned.”

Perhaps it was the same for my father.  Thoughts of his brother made him sore to the touch. He knew he must endure the pain, but he could never resign himself to his brother’s condition or to his institutionalization. And so, as it was for Pearl Buck, silence was the easiest thing for him.

A Willowbrook heroine

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. ”

Margaret Mead

I would guess that Barbara Blum, who was New York State’s social services commissioner from 1977 to 1982, would not consider herself to be one of the thoughtful, committed citizens that Margaret Mead spoke of.  But many others would.

Mrs. Blum, who died Saturday in Albany, N.Y., was a heroine in her own time and she changed hundreds of lives for the better. In the 1970s, she was given the task of finding homes for more than 1,000 residents of the infamous Willowbrook State School on Staten Island.

An infamous snake pit

The school, which was home to 6,000 people with intellectual disabilities, had been described as a “snake pit” by New York Sen. Robert Kennedy after he toured the facility in 1965. Residents were locked in wards, some of them naked and lying in their own waste, with minimal assistance and supervision.  Kennedy said animals in zoos had better living conditions. Willowbrook was nothing better than a human warehouse.

Kennedy’s statements created an uproar, but nothing changed until 1972, when New York City TV reporter Geraldo Rivera managed to get inside Willowbrook and film the deplorable conditions. The resulting public outcry forced the closure of the institution. When it came time to find homes for the thousands of displaced residents, several people turned down the job of leading the effort.

She did the impossible

After various social services organizations pronounced the task impossible and refused to help, Mrs. Blum worked with the Catholic and black community groups to find homes. Her efforts ultimately were successful, but she was met with fierce neighborhood opposition. She was pelted with eggs and her nose was broken.

As is so often the case, people do great things because of some personal heartbreak. For Mrs. Blum, her thoughtfulness and commitment were steeped in the reality that her son was born with autism.

Mrs. Blum’s death was reported in the New York Times. I will add her to the growing list of people I wish I had known.