CW: Ableism, Death, & Medical Care
A deaf patient who uses American Sign Language wasn’t provided with an interpreter while being treated at the University of Pittsburgh Medical Center in Williamsport. This came to light after a complaint was investigated by the U.S. Department of Health and Human Services Office for Civil Rights. As a result, UPMC Williamsport has agreed to make changes to better communicate with disabled patients.
For disabled people, stories like this aren’t shocking. They are part of a pattern in which healthcare systems often treat accessibility as an afterthought and view disabled patients as a hassle.
A study from 2008 revealed that 44% of organ transplant centers in the U.S. stated they wouldn’t consider children with intellectual or developmental disabilities for transplants. The same study found that 85% of these centers factored a child’s disability into their decision-making process for listing them. Disabled children are frequently seen as less deserving of life-saving treatment, not because of their medical needs, but because of assumptions about their quality of life.
The beginning of the COVID-19 pandemic made these disparities impossible to ignore. Disabled people faced not only higher risks but were also given lower priority. A 2021 report from the National Council on Disability indicated that one-third of all COVID-19 deaths in the U.S. occurred in facilities for older adults and disabled people between the start of the pandemic and March 2021.
In 2020, Sarah McSweeney, who had cerebral palsy, was admitted to a hospital with a document outlining her preferred care. Hospital staff were confused because it wasn’t a “Do Not Resuscitate” order. They saw a disabled woman who couldn’t speak and treated her as less worthy.
Many medical facilities are not designed with disabled people in mind. Many have exam tables that don’t lower, inaccessible scales and no patient lifts. When equipment isn’t accessible, it sends a clear message that the space wasn’t built for you and that providing your care would require effort no one is willing to put in.
A 2012 study published in the official journal of the American Association on Health and Disability found that less than 10% of primary care clinics in California have accessible exam tables. The same study found that the four most essential diagnostic tools: exam tables, X-ray machines, scales, and exam chairs, are not accessible. Most don’t have height adjustability, and they’re not designed for wheelchair users.
I have cerebral palsy and, in my experience, medical care is difficult to access. My primary care provider’s office only has one accessible scale. During my physical last year, they attempted to weigh me using a regular scale. My personal care assistant tried to help me stand up. After three tries, they were unable to weigh me.
Real change requires a shift in culture, one that views disabled people as equal partners in their healthcare and sees how vital accessibility is. Disabled people deserve healthcare systems that truly see them, listen to them, and treat them with respect and dignity.
Sources:
Hand, Brittany N., et al. “Comparing Kidney Transplant Rates and Outcomes Among Adults With and Without Intellectual and Developmental Disabilities.” JAMA Surgery, vol. 158, no. 4, Apr. 2023, pp. 386–392. https://doi.org/10.1001/jamasurg.2022.7753.
“[HHS OCR Agreement with Pennsylvania Hospital Regarding Deaf Patient Access].” U.S. Department of Health and Human Services, https://www.hhs.gov/press-room/hhs-ocr-agreement-pa-hospital-deaf-patient-ed.html. Accessed 13 Sept. 2026.
Mudrick, Nancy R., et al. “Physical Accessibility in Primary Health Care Settings: Results from California On-Site Reviews.” Disability and Health Journal, vol. 5, no. 3, July 2012, pp. 159–167. https://doi.org/10.1016/j.dhjo.2012.02.002.
Richards, Christopher T., et al. “Use of Neurodevelopmental Delay in Pediatric Solid Organ Transplant Listing Decisions: Inconsistencies in Standards across Major Pediatric Transplant Centers.” Pediatric Transplantation, vol. 13, no. 7, Nov. 2009, pp. 843–850. https://doi.org/10.1111/j.1399-3046.2008.01072.x.
Shapiro, Joseph. “As Hospitals Fear Being Overwhelmed By COVID-19, Do the Disabled Get the Same Access?” 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.