Pediatric Bioethics: Rethinking Disability in Pediatrics: Historical, Conceptual and Ethical Reflections to Improve Clinical Practice

Column Author:  Jeremy R. Garrett, PhD | Program Director, Pediatric Bioethics Fellowship, Professor of Pediatrics, University of Missouri-Kansas City School of Medicine

Column Editor: Brian S. Carter, MD | Interim Director, Bioethics Center; Department Chair, Department of Medical Humanities and Bioethics, Professor of Pediatrics, University of Missouri-Kansas City School of Medicine

From its earliest days, the field of bioethics has been keenly interested in the intersection of disability and pediatrics. But how bioethics has understood and evaluated decision-making at this intersection has changed significantly over the past 60 years. Exploring the historical shifts in conceptual and ethical frameworks is instructive for improving clinical care for patients living with disability today.

One question that engrossed many of bioethics’ founding figures concerned whether it was ethically permissible to withhold basic lifesaving interventions from infants born with Down syndrome. This question gained wider public attention in 1971 when a “landmark” short film, commissioned by the Joseph P. Kennedy, Jr. Foundation and depicting a composite of three cases that had occurred at Johns Hopkins Hospital, was shown before an international symposium at the Kennedy Center for the Performing Arts.^1,2 The film portrayed a young couple faced with a choice whether to pursue surgical correction for duodenal atresia in their newborn son. Given that this procedure was, even at that time, a safe and routine operation, it might seem, from our contemporary vantage point, like no “decision” at all — the parents obviously should pursue the surgery, as it was necessary to save their son’s life. However, the case has a wrinkle — the son is, to quote language used widely at the time and in the film to refer to individuals with Down syndrome, “a mongol.”³ The young parents are thus offered a choice regarding surgery, and, undoubtedly influenced by “medical facts” regarding the notably shortened life expectancy and numerous hardships awaiting their child as well as wider cultural norms (endorsed even by trusted medical authorities like Dr. Benjamin Spock) that such children are burdens to their families and society, they opt to withhold this intervention. Fifteen agonizing days later, the infant dies from dehydration.

In the decades since, many bioethicists and disability advocates have argued for shifting from a medical to a social model of disability. Understanding this shift requires distinguishing among three important concepts: (1) impairment — “a physical or mental characteristic labeled or perceived” as a “dysfunction,” (2) disability — a (usually) “significant personal or social limitation associated with that characteristic,” and (3) handicap — “the extent to which society will or will not make accommodations, the degree to which one’s disabilities do or do not prevent social functioning and integration.”⁴ On the medical model, disability is caused by impairments, implying that “solutions” need to target the underlying individual physical or mental characteristic. The social model, by contrast, views disability as resulting primarily from handicap — the failure of social environments to accommodate difference and enhance social functioning and integration for all people. Accordingly, whatever adverse effects might result from the impairment itself, the far more damaging effects result from “social exclusion, are greatly magnified by hostile environments, and could be significantly reduced by more inclusive environments.”⁵

Down syndrome powerfully demonstrates the limitations and dangers of the medical model of disability. In 1971, and as late as 1983, the average life expectancy for a person with Down syndrome was 25-35 years. Today, it has increased to 60 years, with some people living to 80. While some general medical advancements have contributed to this increase, little has come from targeting the genetic “impairment” itself. Rather, most gains in life expectancy and quality of life for people living with Down syndrome have stemmed from ending institutionalization, increasing opportunities for social integration and functioning, and providing adequate medical care (e.g., safe and effective lifesaving surgery) that previously was routinely withheld simply because of genetic difference.

American pediatricians today are better able to address these concerns as they live in a world shaped by the Americans with Disabilities Act (ADA) of 1990, which prohibits discrimination against anyone with disabilities in most aspects of public life. The most readily identifiable impact of the ADA has been in reducing the hostility of the built world to people living with physical disabilities. New building codes require accommodation for wheelchairs, including stalls in public restrooms. In addition, public transportation must be able to accommodate mobility, visually, and hearing-impaired persons. Since its passage, the field of physical medicine and rehabilitation (PM&R) has grown rapidly and today physiatrists will ideally work with an interdisciplinary team to bring their patients the greatest degree of function possible that is consistent with their goals and values.

Nonetheless, there is still significant work to do. According to the National Survey of Children’s Health, 1 in 5 American children has special health needs.⁶ In Missouri and Kansas, a quarter of children have one or more functional difficulties.⁶ Of children with special health needs, only 33% in Missouri and 40% in Kansas are flourishing based on measures of resilience, self-regulation, and curiosity about learning.⁶ Bioethicists and disability theorists have much to offer today’s clinicians in rethinking how they might improve care for patients living with disability. Philosopher Joel Michael Reynolds identifies three problematic assumptions that clinicians would do well to discard⁷:

1. Quality of life is always, only, and significantly diminished by the loss or impairment of typical abilities.

Numerous studies demonstrate otherwise, and clinicians would especially benefit from the rich body of qualitative data discussing this from the first-person experience of persons living with disability.

2. The “‘normal’ able body is better than abnormal bodily forms” and that everyone wants, should have, and would suffer without such a body.

This assumption is both empirically false and conceptually flawed — it ignores the rich culture and flourishing lives fostered by persons living with disability, and it fails to appreciate that “plurality in embodied human form is normal, not abnormal.”

3. Disability entails “disease, illness, pain, suffering, and disadvantage.”

To live with disability is not “automatically or necessarily” to live with any of these other states. The experiences of disability are as varied, multifaceted and contextually influenced as any other “significant facet of human identity.”

In addition to calling on clinicians to challenge these underlying ableist assumptions, Reynolds encourages them to rethink their relationships and clinical engagement with patients living with disability. By “[fusing] clinical understandings with patients’ lived experiences, [sharing] authority in communication and decision making, and [elevating] patients as experts in living with disabilities,” clinicians can become true and welcome partners in improving their patients’ quality of life and flourishing.

References:

1. The Joseph P. Kennedy, Jr. Foundation. Who Should Survive? Guggenheim Productions, Inc; 1971. Available at: https://mn.gov/mnddc/ada-legacy/who-should-survive.html
2. Jonsen AR. The Birth of Bioethics. Oxford University Press; 1998.
3. Fost N. “The Hopkins Mongol case”: the dawn of the bioethics movement. 2020;146(s1):e20200818C. doi:10.1542/peds.2020-0818C
4. Brody H. The Future of Bioethics. Oxford University Press; 2009.
5. Putnam D, Wasserman D, Blustein J, Asch A. Disability and justice. In: Zalta EN, ed. The Stanford Encyclopedia of Philosophy (Fall 2019 Edition). Metaphysics Research Lab, Stanford University; 2019. https://plato.stanford.edu/archives/fall2019/entries/disability-justice/
6. Child and Adolescent Health Measurement Initiative. 2021-2022 National Survey of Children’s Health (NSCH) data query. Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Accessed April 1, 2025. childhealthdata.org
7. Reynolds JM. Three things clinicians should know about disability. AMA J Ethics. 2018;20(12):E1181-E1187. doi:10.1001/amajethics.2018.1181