Two new books about Rosemary Kennedy, the lobotomized daughter of the Kennedy family, have been published in recent weeks, one by the niece of Rosemary’s caretaker, the other by an historian. The news they bring had been hidden out of sight, as are so many family secrets about mental illness. As I’ve been writing a book about the two lobotomies in my own family, I’ve been thinking about Rosemary and my Uncle Bennie, a comparison that is revealing about how we treat the mentally ill.
My uncle, Bennie Goldstein, and Rosemary Kennedy were born within nine years of one another—my uncle in 1909, Rosemary in 1918. They came into the world not more than ten miles apart, Rosemary in Brookline, Massachusetts, Bennie in nearby Roxbury. Rosemary was born into an Irish family that would number among them a United States president, Bennie to a modest Jewish family of immigrants from Russia.
They both suffered from mental illness: Bennie from dementia praecox as schizophrenia was called then; Rosemary from long-debated issues of which minor mental retardation seems a certainty.
The fates of Bennie and Rosemary began to converge at the First Neurological Congress held in London in 1935, where a session on the frontal lobes featured an experiment on two bad-tempered chimpanzees who became docile after removal of their frontal lobes. After the Congress, neurologist Egas Moniz went home to Portugal where he performed an early lobotomy, the first brain surgery to treat mental illness. He would win a Nobel Prize for this discovery. A few years later, the operation reached America, marketed to the public by pathologist and enthusiast Walter Freeman.
By the late thirties the fates of Bennie and Rosemary drew nearer. When Bennie became increasingly violent and a lobotomy was suggested, his sisters—my mother and aunts, young women at the time—chose to go ahead based on their faith in the authority of doctors. The decision to go ahead with Rosemary’s surgery was made by one person, her father, Joe Kennedy, who was concerned that his daughter, growing into a voluptuous teenager without psychological constraints, could become pregnant and embarrass his political ambitions.
Both Bennie and Rosemary were lobotomized within a year of one another—Bennie in 1940 at age thirty-one; Rosemary in 1941 at age twenty-three. Bennie emerged from the surgery profoundly damaged. He walked slowly, and after he sat down he barely moved. He didn’t speak at all. He didn’t react to anything or anyone around him. Rosemary’s aftermath was even more disastrous: she was permanently disabled, paralyzed on one side, incontinent, and unable to speak coherently.
Here their stories diverge. I am continually surprised to realize that Bennie went on to lead a better life than the far more economically privileged Rosemary, who was sent to a house built especially for her on the grounds of a school in Wisconsin, with only a hired private nurse for company. Her siblings were told that Rosemary was away working; she didn’t see any of them until after her father’s stroke in 1961.
Bennie was never left alone. His sisters rallied around him. He lived with his mother, supported by a financially successful sister who paid for all of his needs. The sisters visited several times a week. When Bennie’s mother had to be moved to a nursing home, Bennie went with her as a matter of course. After her death, his sisters went on taking him to family gatherings, to a sister’s home for the annual Thanksgiving dinner, to another’s home for summer cookouts. My mother toted his laundry to our house to wash and iron. My father brought the clothes back to the nursing home starched and neatly folded, smelling of Ivory Snow.
In a follow-up study, Walter Freeman concluded that post-lobotomy Jews had the best outcomes because their close families kept them at home. The comparison of Bennie with Rosemary is not about religion or ethnicity or family in the conventional sense. Nor is it congratulatory to my own family who went on to make a terrible mistake, choosing to lobotomize a sister fifteen years later. Their mistakes led me to ask how this could have happened and to writing my book.
One visit I made to Bennie when I was in high school has illuminated for me how the comparison between Bennie and Rosemary points the way beyond the barbaric surgeries of the past and toward another way to treat those afflicted by mental illness. Every month my father would go to the nursing home, bringing a razor from home to shave the back of Bennie’s neck. When he finished his careful downward strokes, Bennie’s back hairline was straight, demarcating the salt-and-pepper hair above from his white skin below. My father carried a towel to the wastepaper basket, shaking it out until most of Bennie’s hairs had fallen from it. Bennie hadn’t said a word.
Later, I asked my father why he went out of his way for Bennie who wasn’t even his own brother and who didn’t seem to care one way or another.
“Look,” my father said, “he’s a human being, isn’t he?”
With these words, my father had recognized the fact that our damaged relative deserved to be part of the human family with all its rights. One right is to live life as a complex human being; this had been taken from Bennie and Rosemary with the operation. But there is another right that should be intrinsic to our membership in the human community: the open acknowledgement that we all have the same needs, whether mentally damaged or not. Instead of the tragic banishment that Rosemary endured, we need to be cared for and included, all of us for one another.