This essay examines the portrayal of Down Syndrome in Kim Edwards' novel "The Memory Keeper's Daughter," contextualizing the story within the history of disability stigma and medical advancement in twentieth-century America. The paper traces the evolution of attitudes toward Down Syndrome from the early 1900s—when infanticide and forced sterilization were common—through the civil rights movements of the 1960s and 1970s. By analyzing the contrasting responses of two characters to a newborn with Down Syndrome, the essay demonstrates how individual prejudice and acceptance shape lives, while arguing for greater societal embrace of neurodiversity and disability rights.
In the 1900s, the world was plagued by war and discrimination. The theory of eugenics—a science of controlled breeding to create an ultimate species—was a popular belief among those who held the idea that certain genetic conditions represented inferior traits. For those unwillingly born with conditions and diseases affecting their mental health, the world was bleak. In the novel The Memory Keeper's Daughter by Kim Edwards, readers see the consequences faced by a father who identifies Down Syndrome in his daughter and willingly sends her out of his life. Through the novel's progression, the story traces both the child's development and her struggle for normalcy, alongside the life-altering effects of David Henry's decision.
Down Syndrome, now recognized and studied extensively by modern medicine, affects approximately 1 in every 691 births. Although it is the most common genetic condition in the United States, many people remain uncertain about what Down Syndrome entails and treat those affected as intellectually disabled regardless of their actual capabilities. The sole known cause of Down Syndrome is an abnormality in the 21st chromosome, which occurs most often when older women produce offspring. This abnormality is usually identifiable at birth by physical features such as low muscle tone, a deep crease across the palm of the hand, a slightly flattened face, and eyes that possess an upward slant. Although these features do not automatically confirm Down Syndrome, they serve as good indicators of the possibility of a congenital condition. With each individual, the severity of Down Syndrome varies considerably. While some experience very mild cognitive delays, others may be years behind their appropriate age group and very slow to develop. Due to modern medicine and corrective surgeries, the average lifespan of a person affected by Down Syndrome is now approximately 60 years old. Although the lives of those affected can be fairly normal in today's society, this was not always the case.
Even in the United States, the phrase "all men are created equal" did not hold true for those affected by Down Syndrome prior to the late 1900s. Originally discovered and described by John Langdon Down in 1866, those affected faced a long and difficult journey. In the early 1900s, many parents were encouraged to starve their children who exhibited any signs of disability rather than prolong their short lives. Children with disabilities who survived past childhood were often petitioned to be sterilized so that they could not have children with similar conditions. During the 1930s and 1940s, when World War II took place, those suffering from mental handicaps were placed alongside Jewish victims in Hitler's eugenics (superior species) movement. At this time, nearly 200,000 people suffering from mental disabilities were eradicated from society. Similar to Jewish victims, they were herded to concentration camps, stripped of their dignity, and forced to do hard labor until death.
Progress came slowly. It was not until the 1950s that the National Association for Retarded Citizens was founded, beginning to lay groundwork for equality. However, the disabled were excluded from the Civil Rights Act of 1964. It was finally in 1975 that a law was developed enabling handicapped children to receive education in public schools. Beyond lawful rights, the medical side of life has also improved dramatically. In the 1960s, those with Down Syndrome were not expected to live past the age of 2. This improved greatly by 1997, with significant disparities among racial groups: Caucasians had a life expectancy of 50 years, African-Americans 25 years, and all other races 11 years. It is this history of medical advancement and evolving civil rights that provides crucial context for Kim Edwards' novel, set against the backdrop of the 1960s.
The novel is set in the mid-1960s, focusing on Dr. David Henry and his pregnant wife Norah. The story begins when, due to an unfortunate snowstorm, David is forced to deliver his own babies with the assistance of nurse Caroline Gill. The first child, a boy later named Paul, is healthy. However, the unexpected second child, a girl later named Phoebe, exhibits the external signs of Down Syndrome. Upon inspection, David immediately instructs Caroline to prevent his wife from seeing Phoebe and gives later instructions sending Caroline to take Phoebe to a mental institution, informing his wife that the baby died at birth. Upon arrival at the institution, Caroline witnesses the extreme mistreatment of the residents and, rather than leave Phoebe there, decides to take her home instead.
Edwards demonstrates the development of her characters' feelings and behaviors toward Down Syndrome throughout the novel. Upon first seeing his daughter, David Henry states: "This poor child will most likely have a serious heart defect. A fatal one. I'm trying to spare us all a terrible grief," immediately assuming the worst of his daughter rather than giving her a chance to live as part of their family. This decision, however, punishes him with a pain-filled, guilt-ridden life that eventually leads to his separation from Norah and a rocky relationship with his son Paul. In stark contrast, the novel demonstrates the acceptance that comes with genuine engagement. Caroline takes Phoebe to Pittsburgh and makes a life for them, raising Phoebe as her own and fighting fiercely for her against those who make cruel comments such as, "What a terrible shame! Oh, you're living my worst nightmare," and "At least she won't live very long—that's a blessing." Rather than wait for the inevitable that was commonly expected, Caroline enjoys her time with Phoebe and encourages her to accomplish everything she can. Edwards' novel illustrates how a single judgment based on one isolated feature can shape an entire life, leaving readers wondering what would have become of Norah and David had Phoebe not been sent away.
"Reflection on persistent stigma and call for social progress"
You’re 85% through this paper. Sign up to read the remaining 1 section.
Sign Up Now — Instant Access Already a member? Log inAlways verify citation format against your institution’s current style guide requirements.