Disability Culture Watch

The Memory Keeper’s Daughter by Kim Edwards has been on the New York Times and many other bestseller lists for several months, often in first place. The story begins in 1964 in a snowstorm, with the birth of twins, a boy and then, some minutes later, a girl. The babies are delivered by their father, an orthopedic surgeon called into service when the storm prevents getting to the hospital. When he recognizes that the girl has the facial markings indicating Down syndrome, he gives the baby to his nurse and urges her to take the girl to an institution and leave her there, before his wife, who is heavily sedated, awakes and sees her. When she does wake up, the doctor tells his wife that the baby died.

The remainder of the novel follows the parallel lives of these siblings, and the families that raise them. The nurse did not, could not, leave the infant at the desolate institution the baby’s father had abandoned her to. In alternating sections of the book, we read of the different trajectories of these two children’s lives over the course of their first twenty five years. Along with these stories, we get a glimpse of the struggle that families of children with disabilities have had to find schools and communities where they will be accepted and offered opportunity.

I liked the writing very much, and was carried along by the tensions that build as the story develops. The book’s appeal for me, though, is that it questions the morality of institutionalization, and forces readers to confront preconceived ideas about the relative value of the nondisabled and disabled siblings. Since reading the book, I have read several reviews. What is startling to me about the reviews, is that the whole idea of disability, and the worthiness of disabled people, are given scant attention. If you check the reviews on Kim Edward’s website you will have difficulty finding much comment about disability. The idea of the family secret and the idea of redemption come up frequently in the reviews, but disability does not. It would be like talking about Schindler’s List without discussing anti-Semitism.

I would like to focus on disability here. Although The Memory Keeper’s Daughter is set in the recent past (1964-1989), the ideas and issues explored are pertinent to the present moment. We live in an era when it has become not only commonplace during pregnancy, but in some circumstances mandatory, to employ prenatal screening to predict a range of conditions. According to Wikipedia: “A 2002 literature review of elective abortion rates found that 91–93% of pregnancies with a diagnosis of Down syndrome were terminated.” A broad range of testing is currently available and more methods are in development to identify genetic markers indicating the likelihood that a condition will be present in the baby. How a given condition will manifest in a child is unpredictable in most cases, and certainly there is no prediction for the quality of life the person will have.

In the era described at the beginning of the Memory Keeper’s Daughter, the mid 1960s, these methods were not available, and so detection of disabling conditions occurred at birth, or at some point in development. Though many disabled newborns were taken home and raised by their parents, institutionalization and the more profoundly aggressive infanticide were practiced with varying degrees of public approval. Institutionalization is still a reality for disabled infants and for disabled people of all ages, usually when there is no medical necessity for people to live in an isolated and contained setting.

Edwards takes us, only briefly, into the institution that contains children who have been labeled at various historical moments, society’s “undesirables” or “incurables.” In my memoir, My Body Politic (U of Michigan Press, 2006), I used the word “preventables.” I imagined a future time when that term might be applied to children born to parents who had the hubris to have an unmediated pregnancy. I don’t think this is a far-fetched idea. As the reach and hold that genetic science has over the process of reproduction and the repairing of bodies grows, I am concerned that those with unusual characteristics will be increasingly disparaged and underprivileged. Certainly, in the present moment we are witnessing a growing belief, and a profitable industry which bolsters that belief, that imperfection is preventable or at least remediable. Plastic surgery, cochlear implants, and prosthetic devices of all sorts may seem to serve only individual users, but to the extent that they mask impairment, the public profile of disability shifts and these methods increase the perceived need to cover up imperfections or to hide yourself away.

These are critical moral issues, and I commend Kim Edwards for providing such a well-written and compelling novel, and an excellent vehicle to examine attitudes towards disabled people. I am encouraged by the book’s critical and popular success. Yet I am concerned that the numerous book club and other discussions that the work has enjoyed do not take on this core ethical and social issue.

As a society, we can congratulate ourselves on the advances made, but we should use the reading of The Memory Keeper’s Daughter as an opportunity to consider the ongoing oppression and discrimination that mark most disabled people’s lives. It is the present moment that I think reviewers and even Edwards, in her discussion of the work, have ignored. Edwards said in an interview that she chose the period (1964-1989) to chronicle how attitudes toward disability have changed. One reviewer commented: “If anything this beautifully crafted novel reveals a great deal about how society’s attitudes have changed towards the disabled in the last 40 years,” and at the end of the review: “Readers should not blame David Henry for what he did in 1964 — it was normal at that time.” But, isn’t that a question that the book raises? I don’t think it is the reviewer’s job to resolve that huge question so patly. Another reviewer briefly commented on the past, but not present, status of disabled people, using the outmoded term “the handicapped.”

Indeed, disabled people in 2007 experience greater social integration, and have more educational and economic opportunities. These are relative terms though, and a disability-focused critique would help readers explore the ways in which stigma and exclusion still mark the lives of most people with disabilities. How do parents, schools and other sectors of the society “send their disabled children away”? Maybe not swaddled and sent off in a snowstorm in the middle of the night - but how, how often and with what degree of social acceptance?