Contextualizing Future Health: A Parent and Resident Discuss Down Syndrome.

Abstract

When I saw an e-mail with the subject line “Pediatric Resident Interested in Down Syndrome,” I was intrigued but skeptical. As the parent of Henry, an 11-year-old with Down syndrome, I look for opportunities to learn about the latest research and health care recommendations, but I am also wary of medical approaches that diminish the personhood of people with intellectual disabilities. I was pleasantly surprised to find that the sender was less interested in etiology or treatments for Down syndrome than in studying the social dimensions of health. She had read an article I wrote about my son’s love of the Muppets. In the vibrant world he shares with the Muppets, Henry finds comfort and a sense of belonging; there is no disability because nobody is perfect, and difference is the norm.1 This resident realized the value of looking at patients as individuals embedded in families and lived environments, and she wanted to treat my son and me (his mother but also an English professor with a long-standing interest in disability culture) as collaborators rather than as research subjects. This was the promising beginning of my ongoing dialogue with Katharine Press Callahan, a small portion of which is represented below. As a pediatric resident pursuing neonatology, I have often wondered about the lives of patients beyond the NICU and what genetic findings can and cannot foretell about patients’ futures. Teaching about Down syndrome centers on acute health concerns, but we receive little information about living with disabilities during medical education. We learn that Down syndrome is caused by trisomy of the 21st chromosome, with consequences that … Address correspondence to Katharine Press Callahan, MD, Division of Neonatology, Children's Hospital of Philadelphia, 3401 Civic Center Blvd, 2NW53, Philadelphia, PA 19104. E-mail: kpresscallahan{at}gmail.com