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Down Syndrome Decades Ago: Nothing But Absence

(An abridged version of this review appeared in the May/June issue of Books and Culture.)

Fifty years ago, when Anne Crosby's son Matthew was born with Down syndrome, the life expectancy of a "mongoloid" child was around twenty years. Doctors and teachers called children with Down syndrome "ineducable," and professionals advised institutionalization for these children because it would be detrimental to the rest of the family to keep them at home. As one doctor says about Dido, Matthew's older sister, "Here is the important child, the bright and whole one. We can safely say the other is The Throwaway Child."

When Matthew arrives, his mother does not want him. She imagines allowing him to die (and goes so far as to consult with a lawyer about this possibility). She explains: "I felt nature had been mininterpreted, misused, so that this flawed little being was now paying for the doctors' interference, foisted with a life I felt he had no urge to live… He was a mongoloid, perhaps not even a well-synthesized mongoloid…" So Matthew's life begins: unwanted, sickly, ineducable, a detriment to society and family alike.

Although access to prenatal screening and legalized abortion has decreased the birth rate of children with Down syndrome in both Europe and the United States, individuals with Down syndrome have nevertheless become more and more integrated into society in recent years. With that integration has come a host of memoirs, starting with Martha Beck's Expecting Adam and Michael Berube's Life as we Know It, and including the more recent Road Map to Holland by Jennifer Graf Gronenberg and The Year My Son and I Were Born by Kathryn Lynard Soper. Each of these books describes the early years of life with a child with Down syndrome from the 1980s through the present. Anne Crosby's book was written and published in 2006, but it stands apart because it chronicles Matthew's life from infancy through adulthood, and it serves as a testimony to the very different social experience of life with Down syndrome in the 1960s and 1970s. Matthew: A Memoir is a tragic story. Anne Crosby loves her son, and her recollections of their years together portray him as an earnest, lively, and thoughtful young man. But Matthew's father never accepts him. In Crosby's words, "[Theo] claimed that Matthew's proximity was continuing to ‘destruct' our family life." At his father's insistence, Matthew spends most of his life in institutions. And yet even the most well-meaning staff members can never replace his family or the sorrow that comes from their separation. Crosby describes one outing with her son:

"There were times when [Matthew] whispered, ‘Dancing.' Then I stood up and took him in my arms as I tried to hum a Strauss waltz or some blues melody from Jelly Roll Morton. I stepped and spun about the room, but my efforts to achieve gaiety made us sad. Matthew might weep, but I dared not for fear of never ceasing."

When he does leave the grounds of the institution, Matthew encounters a world that has no place for him. On vacation with his mother, a waiter comments upon the fact that the two of them are alone without Matthew's father: "It is sad, Madame, but no self-respecting man can accompany a wife who brings such a son, can he?" Matthew's one experience in the workplace ends in disaster. His attempt to live semi-independently results in brutal and persistent sexual abuse by his roommate. As he grows older, his self-esteem plummets, until he tells his mother, "Not good as Dido… Not clever at skates… Not to reading ‘n writing…'n talking… lots of Nots for biggest things." This sad tale ends with Matthew in a hospital ward, dying of heart failure.

As the mother of a child with Down syndrome, I was both fascinated and appalled by this story. It serves as a haunting portrait of the ways social norms can adversely impact the lives of individuals with disabilities. Given Matthew's capacity for love and compassion, it is easy to imagine a happier saga, if only Matthew had been able to stay at home, if only the doctors and teachers and other professionals in his life believed in his value as a human being, if only society had been willing to receive him as a full participant. This story should be of great interest to any scholar looking for testimony to affirm the idea that disability is a social construct.

But I am not certain that this book achieves the words of its subtitle, "A Memoir." It is more a chronicle, a year-by-year report of Matthew's life that moves forward without offering much by way of universal human concerns that draw a reader in. Furthermore, although the story involves much love, it contains very little hope. Crosby concludes the book with an image of Matthew after his death: "With his eyes closed and his mouth set, in the face which was once Matthew's I saw nothing but absence." Matthew: A Memoir stands as an important testimony to the reality of life with Down syndrome in the age of institutionalization, and yet I suspect many readers would rather not know what happened to Matthew and his family.

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