at home with down syndrome
In storage at the Museum of Fine Arts in Boston is the secret to what one professor calls “the first Down Syndrome Association in the history of the world.” In 1982, Dr. Brian Stratford, a specialist in developmental disabilities at the University of Nottingham, suggested in the journal Maternal and Child Health that the Italian Renaissance painter Andrea Mantegna used a little boy with Down syndrome as the model for his Christ child. Stratford made a “clear characteristic diagnosis” of the baby based on his distinctive facial features and the shape of his hands and toes.
The curator at the MFA dismissed this theory, attributing the work to an unknown, less technically astute follower of Mantegna, and calling the resemblance to a child with Down syndrome accidental. In the meantime, however, Stratford heard from a history professor in Rome. The Gonzaga family of Mantua, Mantegna’s sponsor, had a boy with an unidentified “sickness,” she said, and one of the artist’s own fourteen children shared this condition—a not insignificant factor in Ludovico Gonzaga’s choice of Andrea Mantegna as his court painter.
Gonzaga and Mantegna appreciated the humanity of these children whom some might have preferred to hide away or let die, and that shared sensitivity gave them a “sense of purpose” with respect to disability which Stratford regrets has been all but forgotten by our society: “Perhaps Mantegna saw in this child something beyond the deficiencies which now so occupy our attention and perhaps then, the qualities of love, forgiveness, gentleness, and innocence were more readily recognized. Maybe Mantegna saw these qualities as more representative of Christ than others we now regard so highly.”
Down syndrome is a developmental disability resulting from an extra copy of the twenty-first chromosome. It is the most common single cause of human birth defects, occurring in about one in eight hundred births. Symptoms include mild to moderate mental retardation, lower muscle tone, an approximately forty percent chance of a congenital heart defect, and lesser but significant risks of gastrointestinal disorders and leukemia.
Individuals with Down syndrome generally have outstanding social skills and in a supportive setting can be fairly high-functioning. Due to improving medical care, the life expectancy for someone born with Down syndrome has increased from twenty-five in the early 1980s to more than fifty today. In many other ways as well, a child born with Down syndrome today has brighter prospects than at any other point in history. Early intervention therapies, more inclusive educational support, legal protections in the workplace, and programs for assisted independent living offer a full, active future in the community. Adoption agencies report a high demand for children with Down syndrome.
However, the abortion rate for fetuses diagnosed with Down syndrome tops ninety percent. The alphafetoprotein maternal blood-serum test followed by amniocentesis are standard practice in prenatal care for women over thirty-five, who have an elevated risk of conceiving a baby with Down syndrome. Eighty percent of babies with Down syndrome are born to younger women, however, due to their higher overall fertility rate, and the American College of Obstetricians and Gynecologists (ACOG) recommended in 2007 that all pregnant women be offered screening for Down syndrome. While ACOG insists on its neutrality with regard to abortion, it is not difficult to interpret this move as an effort to reduce the number of individuals with Down syndrome who are carried to term.
Read on.