CW: Ableism
We often overlook the challenges facing disabled patients in medicine. In medicine most professionals are focused on how patients are healing. But equally critical are the ways in which care is provided for vulnerable patients.
Patients with intellectual and developmental disabilities encounter barriers to medical care that exacerbate their lived experiences. Take the stories of people like Elizabeth Bell from the United Kingdom and James Oakley from the United States. These stories expose a concerning pattern in the way that healthcare systems ignore disabled people.
Elizabeth, who has Down syndrome, had a seizure and was taken to the hospital. She was separated from her brother, who is also her primary caregiver. Subsequently, he was not told when she was discharged and she was left alone while answering questions.
Likewise, James, who has autism and epilepsy, ended up in a U.S. emergency room in distress. He was agitated and would not eat or drink. His symptoms were dismissed as “part of his autism.”
It wasn’t until later that he received treatment for kidney stones. Can you imagine having kidney stones and not being able to tell anyone something was wrong? James did everything he could to tell his caregivers that he needed help, but his behaviors were ignored by medical staff and his pain went undetected.
He ended up in the hospital again in 2025, obviously in pain. He had untreated wounds on his hands. While there, staff questioned why he was “full code,” implying that lifesaving interventions weren’t necessary simply because he had a disability.
These failures are typical of the experiences of so many people during the height of the COVID-19 pandemic- when crisis standards for care frequently exposed biases as to whose lives were considered worth saving. Disability was often associated with poor outcomes, further deepening long-held concerns about getting pushed aside or not getting needed treatment.
These stories are not rare however. Disabled people can be treated like they are a burden to medical professionals., Physicians however, are typically not trained to work with disabled people. This is also seen in medical schools, of the 155 medical schools in America, 30 of them have no requirement for education in intellectual and developmental disabilities, and other schools offer it as an elective.
Until we create a healthcare system that offers a more understanding, flexible, and inclusive environment, we will continue to hear stories like Elizabeth’s, and James’s. Such stories are an unspoken cautionary tale demonstrating the ease with which vulnerable patients can fall through the cracks and be treated like an afterthought. We must work together to ensure every patient gets what they deserve— the compassionate and comprehensive care they should be treated with.
Sources:
“A Look at Medical Issues That Can Cause Behavioral Changes in Patients With Autism.” YouTube, uploaded by Kim Oakley, 8 June 2021, http://www.youtube.com/watch?v=-Q43Emsz3FY.
Iezzoni, Lisa I et al. “Physicians’ Perceptions Of People With Disability And Their Health Care.” Health affairs (Project Hope) vol. 40,2 (2021): 297-306. doi:10.1377/hlthaff.2020.01452
Santra, Romila. “U.S. Medical Schools Aren’t Teaching Future Doctors about 7.4 Million of Their Patients.” STAT, Boston Globe Media , 8 Dec. 2023, http://www.statnews.com/2023/12/11/medical-schools-idd-education-intellectual-developmental-disabilities-patients/.
Roberts, Georgia. “‘Hospital Staff Abandoned My Disabled Sister.’” BBC News, BBC, 25 Apr. 2026, http://www.bbc.com/news/articles/cevkw2xjxldo.
Samuelson, Kristin. “Disability Is Often Neglected in Medical School Curricula, New Study Finds.” Northwestern Now, Northwestern University , 14 Jan. 2025, news.northwestern.edu/stories/2025/01/disability-often-neglected-in-medical-school-curricula-new-study-finds/.
Shapiro, Joseph. “As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access? .” NPR, NPR, 14 Dec. 2020, https://www.npr.org/2020/12/14/945056176/as-hospitals-fear-being-overwhelmed-by-covid-19-do-the-disabled-get-the-same-acc.