Although she was as small as the children going house to house in costumes chosen by their mothers—Tinker Bell wings and leafy green leotards, or a plastic fire chief’s helmet and a black coat with reflective trim—Sarah felt too old for trick or treating when she turned eighteen. She’d outgrown the pointed witch’s hat, the American Girl costume.
Sam, fourteen, dressed up as Gene Simmons, the long-tongued bassist for KISS, and John, sixteen, went out without a costume.
I walked into the living room with a wooden bowl full of Snickers and Butterfingers, small yellow boxes of Dots, and white boxes of Junior Mints, with their subtle scent of mint and dark chocolate.
Sarah was lying on the bare oak floor in a white nightgown. Her hair was in French braids, and she wore ruby-red lipstick. Her hands were together over her belly, holding an apple.
I asked her what she was doing.
She answered, but I couldn’t understand her.
“Can you say it again?” I asked. “Say each word carefully.”
“For the kids,” she said, pointing toward the front door, just a few feet away. “For Halloween.” She turned her face toward the ceiling and closed her eyes. Her breathing was slow.
“Are you going to hand out candy?”
She opened her eyes and said a word that I couldn’t make out.
I waited.
“A tableau,” she said, enunciating carefully. She gestured toward the front door again. “For the kids to look at.”
Ahh. “Want a pillow?” Where does she get words like “tableau”?
She lifted her head from the floor to shake it.
“Cinderella had a pillow.”
“Snow White,” Sarah said, resting her head again on the floor.
“She had one too.”
Sarah closed her eyes again, her head shaking just a fraction.
I put the wooden bowl on a shelf next to the front door. “Do you want me to take a bite out of the apple? So it would look like Snow White bit the apple and then passed out?”
Sarah opened her eyes again. Frowned. “No.” She closed her eyes. “But thanks.”
I went back to the kitchen, started clearing supper dishes from the table.
The doorbell rang. It wasn’t even dark out. Through the glass front door I saw a girl dressed in a puffy orange tunic with a collar of pale green leaves, standing with her mother. On the front of the girl’s dress were two black triangular eyes, a triangle nose, and a gap-toothed grin.
“Happy Halloween,” I said as I opened the door. Cold air rushed in.
The little girl looked at Sarah, lying on the floor, feet together, legs straight. The girl looked up at her mother’s face, then back at Sarah.
“Is that Snow White?” I asked, to give the child a context for my daughter on the floor.
The child took a small step back.
“Is she under a spell? Waiting for a prince?”
The mom smiled at me. It was a crooked smile, and I couldn’t tell if it was in appreciation of our little show, or if she could tell Sarah had Down syndrome, or if she was wishing we’d give her kid the damn candy so they could move on.
The child stared at Sarah.
I leaned down and held out the bowl.
The girl stared into the bowl, and took a box of Dots.
“Take another one,” I said.
She paused, and took a Snickers bar.
“Say thank you,” her mother said.
“Thank you,” the girl said. She was staring at my daughter. She dropped the candy into her bag and looked at her mother, who placed a hand on her shoulder to turn her around.
Through the glass of the front door, I saw the child looking up at her mother’s face. The child said something. The mother replied. The child took the mother’s hand, and they walked toward the house next door.
“Dad,” Sarah said. “You don’t have to talk.”
A year later, Sarah, nineteen, decided to help Sally hand out candy. I was working the 5:30 pm to 2 am shift in the ER, so I missed the neighborhood kids trick-or-treating in their round Harry Potter glasses and thunderbolt scars drawn on their foreheads, and the kids with pirate eyepatches and plastic sabers.
A few weeks later, Sally showed me pictures she had taken of Sarah, dressed up to hand out candy. Sarah posed with her face tilted down, eyes staring up boldly into the camera. Her face had a thin layer of white makeup. Her smile was in the shape of an angel’s bow, black lipstick stark against the corpse-colored skin. A thin stream of scarlet trickled from the corner of her mouth. Blue-gray mascara was smeared across each eyelid and shanks of jet-black hair swept through her blond bangs.
She stood with her hips at a tilt: right knee jutting forward, the red sheen of crushed velvet stretching tightly across hips and breasts. A press-on tattoo of a panther was climbing her forearm, the claws leaving red dots on her skin. Her plastic press-on fingernails were tipped in red. The nails were sharp and pointed. A spider sat motionless on the bare skin just above the hint of cleavage. She had crowned herself with a plastic tiara. At the center of the crown was a crystal butterfly with wings of blue sapphires and swirls of red rhinestones.
No pastel pinks or baby blues, no gossamer wings or Tinker Bell wands. It was all blood and sex and black widow spiders. My daughter had stretched the canvas of her imagined self, and had chosen a darker palate.
The inevitability of Sarah reaching puberty, and the possibility of her getting pregnant, had bubbled disturbingly in the back of my mind for years. People often refer to children with Down syndrome as being “so affectionate.” Sometimes it seemed that the ability to love another person had become one of the stigmata of the condition. But Sarah was more reserved than many of her peers. She’d laugh without restraint, and would give you an enthusiastic hug if she knew and liked you. But if you were a stranger, she’d pull away. I was glad of that.
Sally and I had spoken with other parents about birth control. One time, at Special Olympics, another mom and I were talking.
“I don’t get it,” she said. “We can sign the forms to get her tonsils taken out, or her appendix, but not to get her tubes tied.” She continued to stare at her daughter. “The doctor said we couldn’t sign for reproductive surgery, but we could get around it with a hysterectomy. We’d just have to say that she couldn’t maintain her personal hygiene when she had a period. But a hysterectomy seems drastic.”
It did seem drastic, and it didn’t make sense—until I learned the history of forced sterilization programs in the United States. In my home state, North Carolina, between 1929 and 1974, 7,600 “feeble-minded” people were sterilized against their will.
The laws forcing people to submit to sterilization were the result of the eugenics movement. “Positive eugenics” involved encouraging people with desirable traits—high moral standing, intelligence, a strong work ethic—to have more babies. “Negative eugenics” involved keeping the undesirables from reproducing. There was an assumption and fear that underpinned the field of eugenics: that lazy, dimwitted people reproduced more quickly than the virtuous, hardworking ones. Society would soon be overrun by sloth, drunkenness, and poverty, to the peril of all.
The eugenics movement began in Victorian England, and soon became powerful in the United States. Eugenicists successfully lobbied for anti-immigration laws to keep America white, and for laws to prevent interracial marriage. To be clear, eugenicists weren’t big-bellied blue-collar guys muttering about the wops who won’t work and the darkies who do it like rabbits in the bushes. No; eugenicists were educated. They were forward-thinking intellectuals. Progressives. Harvard, Columbia, and Cornell—they all offered courses in eugenics.
In 1920, Margaret Sanger, a proponent of women’s rights, sexual education, and birth control, wrote the following: “The lower down in the scale of human development we go the less sexual control we find. It is said that the aboriginal Australian, the lowest known species of the human family, just a step higher than the chimpanzee in brain development, has so little sexual control that police authority alone prevents him from obtaining sexual satisfaction on the streets.” Said more plainly, she thought that, were it not for the police, the natives would be fucking in the streets.
In 1921, Sanger founded the American Birth Control League, a forerunner of Planned Parenthood. She supported eugenic sterilization (forcing the feeble-minded to submit to sterilization), but she opposed killing subnormal children. The subnormal adults, she wrote, could be segregated or sterilized.
Thirty states passed laws allowing doctors to perform sterilization operations on feeble-minded people against their will and against the will of their family. In 1924, the Virginia State Colony for Epileptics and Feebleminded chose a seventeen-year-old named Carrie Buck as their first case. Carrie had been committed to the Virginia Colony after delivering a child out of wedlock—proof of her promiscuity.
Carrie’s biological mother had, in earlier times, been committed to the Virginia Colony for immorality, prostitution, and for having syphilis. The doctors at the Virginia Colony thought that any child that Carrie conceived would inherit the same feeble-mindedness and sluttiness that she had inherited from her mother.
Carrie fought her case all the way up to the US Supreme Court, where Justice Oliver Wendell Holmes, Jr., wrote, “Three generations of imbeciles are enough.”
At 9:30 in the morning of October 19, 1927, Carrie was given a general anesthetic, and a doctor named J. H. Bell swabbed her belly with antiseptic, cut through her skin and the muscles of her abdominal wall, and stuck his gloved hands down into her belly. He groped around until he found a fallopian tube, delicate and pink, about five inches long. The tubes, also called oviducts, carry eggs from the ovaries to the uterus. Holding one of the tubes in his fingers, Dr. Bell cut out a one-inch chunk. He then put a suture around the stump, and tied a knot that he cinched down tighter and tighter, until the tube was crushed shut. Dr. Bell then swabbed the ends with carbolic acid, and gave them a second swipe with alcohol. He repeated the procedure on the other tube. He then sewed her belly closed, and applied a bandage.
Done.
In the United States, we sterilized people with intellectual disability until the 1970s. 70,000 Americans were sterilized without consent.
When Adolf Hitler wrote Mein Kampf, he was already a big fan of the US eugenics movement. He wrote, “I have studied with great interest the laws of several American states concerning prevention of reproduction by people whose progeny would, in all probability, be of no value or be injurious to the racial stock.”
With the rise of the National Socialist Party in Germany, eugenics blossomed to its full potential. Using laws based on those in the United States, Germany outlawed interracial marriage, and began enforcing sterilization of people who were thought to be genetically inferior. Hitler took it one step further than Margaret Sanger would have and authorized a secret program to “euthanize” sub-par children, using starvation and lethal injection.47 A book co-authored in 1920 by an attorney and a psychiatrist, Die Freigabe der Vernichtung Lebensunwerten Lebens (Allowing the Destruction of Life Unworthy of Life) provided the philosophical and ethical justification for killing disabled children.
This soon evolved into Action T4, a secret program to rid Germany of all people—children and adults—who could weaken the Aryan blood line: people with schizophrenia, epilepsy, congenital deafness, Huntington’s chorea, and mental retardation—they planned to kill them all. The program’s organizers used medical language in their documents—“euthanasia” and “final treatment”—as if killing a patient was just another medical therapy. No attempt was made to pass legislation to make it legal, as they had with compulsory sterilization. Instead, they kept it secret, using a letter from Hitler, on his official stationery, as authorization. They started by injecting individual people. In the Eglfing-Haar institution, outside Munich, the pediatric ward had a special room exclusively for that purpose. A nurse stocked the room and assisted the physician with the procedure. She kept a potted geranium in the windowsill of the sunlit room, to keep it bright and cheerful.48 The progam expanded, and after experimenting with the most humane way to kill large groups at the same time, they settled on carbon monoxide.
When Hitler decided to rid Germany of Jews, gypsies, and political opponents, the basic technologies and procedures were ready.
In 2011, the North Carolina legislature made efforts toward reparations to the individuals and families affected by forced sterilization.49 The state House of Representatives set aside $10 million in the state budget, making North Carolina the first state to try to make compensation to victims of eugenic sterilization, but in June of 2012, the state Senate refused to fund the program. Only after I learned about this did it become clear to me why the genetics counselor, and our OB doctor, had shied away from the subject of sterilization.
I never pushed the issue, and had hesitated even to bring the subject up. There was something intrusive and unseemly about a father wanting to have his daughter sterilized.
Sally assumed that once Sarah was in a group home, staff members would make sure she took her prescribed birth control pills. It’s not that we expected her to be sexually promiscuous, but we hoped she’d fall in love, have a boyfriend, maybe get married. But if we couldn’t sign for a tubal ligation, we surely wouldn’t be able to sign for an abortion. And if Sarah wasn’t competent to sign for her own tubal ligation, how could she sign for her own abortion? If she got pregnant, who would raise her child after Sally and I died?