“My cousin is Downs.” A woman I’d never seen before was bending over my shopping cart peering down at Sarah, who was asleep in a baby carrier.
I was standing in the checkout line of the grocery store, looking at the cover of a Cosmopolitan magazine, curious to know more about “Long Term Lusty Sex: Taking the Monotony Out of Monogamy.” Sally and I had been married for six years. We’d never bored each other in bed, but still . . .
I glanced a couple of times at the conveyor belt—the stacks of frozen pizzas, tubes of refrigerator biscuits, and six-packs of Diet Coke ahead of my purchases. The woman leaning over my shopping cart was about my age, maybe a few years older, and several pounds heavier. “And he is an angel,” the woman continued, still looking down at Sarah. “A perfect angel.” The roots of her blond hair were dark. Her scalp was pink. She straightened. The top few buttons of her blouse were undone.
I bobbed my head and smiled in acknowledgment. It would have been presumptuous to correct her. But it wasn’t just poor grammar to say he is Down syndrome. He must be something more than a diagnosis. And anyway, it was Saturday afternoon, and I was just a guy in a pair of jeans and a T-shirt getting a six-pack of St. Pauli Girl beer and some Triscuits. I wanted to let someone else represent the Down syndrome community.
“You and your wife must be pretty special,” the woman said. “For God to choose you two to raise this little angel.” She looked me in the eye. Her eyelids were a shimmering blue.
In 1953 Dale Evans wrote a book called Angel Unaware about her daughter, Robin, who had Down syndrome.27 Against the advice of the doctors, Dale and her husband, Roy Rogers, decided to “keep” her, and take her home. At the time, doctors routinely recommended that mongoloids be put away. “You don’t want to get too attached,” the doctors told Dale and Roy. “It will only break your heart. This baby will never have a normal life, she will never live past two years of age, she will never be able to read or do anything else. Besides,” the doctors continued, “the baby won’t know the difference anyway. She won’t even remember you from one visit to another.”28
Dale Evans and Roy Rogers were international celebrities with public personas that were as carefully crafted as the characters they played in the movies. In 1943, Roy was featured on the cover of Life magazine. The full-page photograph showed him relaxed in the saddle as his horse reared up on a mountaintop. The article described the character that Roy played: “He is purity rampant—never drinks, never smokes, never shoots pool, never spits, and the roughest oath at his command is ‘shucks!’ ” The report continued, “Roy actually doesn’t smoke and he never takes a drink in public.”29 Roy’s image was on everything from binoculars to boots. In one year alone, 900,000 Roy Rogers lunchboxes, 1,203,000 jeans and jackets, and two million comic books and records were sold.
In her memoir, Cowboy Princess: Life with My Parents Roy Rogers and Dale Evans, Cheryl Rogers-Barnett writes, “I didn’t realize at the time how courageous they were in taking this stand—the studio was very upset with them. To the public relations department, a child with Down syndrome was the ultimate in bad publicity. They were convinced that Mom and Dad would repel their fans by ‘flaunting’ this sick child. Even the people at church disapproved. Some of them believed—and even said aloud—that a child with a handicap was a punishment, that the parent had clearly committed some terrible sin and this child was the result.”
The studio had a point about the brand’s public image: this was a time in which “ugly laws,” written to keep unsightly people from going out in public, were still in existence. The most famous example was part of the Chicago municipal code, passed in 1911 and repealed in 1974: “No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense.”30 Chicago was far from an isolated example: San Francisco, Portland, Denver, Omaha, and Reno all had “ugly laws” on the books. The state of Pennsylvania passed a state version of the law.
The smart thing for Roy and Dale to do would have been to hide the child away.
Pearl S. Buck, the Pulitzer-Prize winning author of The Good Earth and Nobel laureate, spent thirty years denying the existence of Carol, her daughter with intellectual disabilities.31
At first, Carol had seemed like any other child, but she began to express her wants “with jabbering and grunts, sniffing at visitors or jumping up at them like a dog.”32 Buck writes, “She was three years old when I first began to wonder.” She took Carol to physician after physician, hoping to find the cause of the child’s failure to develop. Eventually she took her to the Mayo Clinic, where one of the doctors said, “You will wear out your life and beggar your family unless you give up hope and face the truth. This child will be a burden to you all your life. Get ready to bear that burden.”
Buck would later write, “I can remember those words exactly as he spoke them. I suppose the shock photographed them upon my memory. I remember too, exactly how he looked, a little man, shorter than I, his face pale, a small, clipped black mustache, under which his lips were grim. He looked cruel, but I know he was not. I know now that he suffered while he spoke.”33 She referred to the exchange as a “moment for which I shall be grateful as long as I live.” She decided to put the child away.
After visiting multiple state and private institutions, Buck found one with a director she trusted, the Vineland Training School. Dr. Edward Johnstone’s philosophy was: “The only child who can learn is a happy child.” Even so, it was a difficult decision to leave Carol there. “Only the thought of a future with a child grown old and me gone kept me from hurrying to the railway station.”
Carol was born in 1920, during the height of the eugenics movement. Part pseudoscience and part social reform movement, eugenics aimed to breed better humans. A child with mental retardation was seen as indelible proof of hidden faults in the bloodline: alcoholism, drug addiction, sloth, or sluttiness. A disabled child brought shame to the family.
Mainstream magazines like Collier’s ran articles about eugenics. This was a magazine for sophisticated, educated readers: Winston Churchill, Ernest Hemingway, F. Scott Fitzgerald, J. D. Salinger, and John Steinbeck all wrote for the magazine. The advertisements were for upscale whiskey, GE refrigerators, and Nash automobiles.
Past issues of Collier’s are collectable now for the vibrant original artwork on the covers. The issue of May 20, 1939, has an illustration that is clever and stylish and fills the entire cover. Across the bottom, in bold block print, it reads: “LEGALIZE MERCY KILLINGS! By Dr. Foster Kennedy.” Dr. Kennedy, a well-known neurologist and eugenicist, believed in euthanizing “defective” children. He wrote, “I am opposed to the legalization of euthanasia for those persons who, having been well, are now ill. I believe it would be for the general good that euthanasia be legalized for creatures born defective, whose present condition is miserable and whose future, in the opinion of a properly constituted board acting under state authority, is hopeless.”34
A couple of years later, Dr. Kennedy wrote an editorial in the American Journal of Psychiatry, specifying that the defective children should not be killed before five years of age, because in some cases, it took that long to determine if the defects were severe and permanent.35
Germany was the only modern country that went so far as to kill defective children, but eugenicists in the United States made disabled children a source of personal shame. When the Nazi war crimes were exposed at the Nuremberg trials, eugenics lost much of its popular support in the United States. But the notion that a child with intellectual disabilities exposed a secretly tainted bloodline was slow to fade. It’s easy to see how Buck would deny her daughter.
But in May of 1950, she went public about Carol in a feature article titled “The Child Who Never Grew,” for Ladies’ Home Journal. She later expanded it into a book of the same title.36 In the book, she was honest about her ambivalence about her daughter. While she considered the idea of killing disabled children “monstrous,” she admitted that “it is inevitable that one ponders much on the matter of a kindly death.”
Not Dale Evans. She cherished Robin until she died from encephalitis just before turning two years old.37 Dale began Angel Unaware a few days later. This short book is written as if it was a letter from Robin to God, reviewing the mission God had assigned to Robin: to enrich the spiritual lives of her parents. The book came out in 1953, five years before Lejeune would discover the extra copy of the chromosome that causes Down syndrome.
I could accept the idea that a God may exist—the one I’d learned about in Sunday school. A God who has counted every hair on my head, and who knows when every sparrow falls. I could accept a God who’d know how many dimples there are on a golf ball, and how may grains of sand are in the desert. I could see how that type of deity could be believable. But I couldn’t imagine an omniscient deity choosing, on purpose, to “send down a child with Down syndrome.” And I couldn’t imagine how He would do it: would He send the extra 21st chromosome down like a tiny bolt of lightning? Would the woman’s belly twitch from the impact as the special little angel bumped a normal kid out of the way? I just couldn’t believe that.
But Dale Evans could, and she wrote a brave book, which sold over 500,000 copies. Evans donated all of the proceeds to the National Association for Retarded Citizens, which allowed them to establish an office. The organization later changed their name to the Association for Retarded Citizens, and was later known as the ARC. When the medical term “retarded” became pejorative, they changed the name to The Arc, dropping the offensive word.
After Angel Unaware was published, whenever Dale and Roy appeared at rodeos or other public appearances, there would always be children with Down syndrome in the audience, clapping and laughing, out in public with their families.
“My aunt kept him,” the woman said as she handed the checkout guy some cash. “He’s thirty-two. Watches TV with her.” She turned back to face me. “Can’t read a lick, but he loves Kojak. He can go through a TV guide and put his finger on every single Kojak.” Her voice carried a note of pride. She put her change in her pocketbook and snapped it shut. Her high-heeled shoes made sharp clicking sounds as she pushed her cart away.