CW: Ableism & Death
In the early days of the COVID-19 pandemic, disabled Americans grappled with a terrifying question: Whose lives would be prioritized if medical resources were strained? For so many disabled people, the fear wasn’t hypothetical. It came from a long history of assumptions about the quality of disabled people’s lives.
Now, as the federal government prepares to rethink rules prohibiting disability discrimination in health care, the fears are resurfacing. The decision relates to regulations connected to Section 1557 of the Affordable Care Act, a patchwork of rules banning discrimination in healthcare programs receiving federal funding.
Disability advocates have said the stakes are painfully clear. At stake is whether disabled Americans will continue to be protected against discrimination in medical settings, at a time when healthcare systems are increasingly shaped by algorithms, institutional policies, and overwhelmed hospital systems.
These are prejudices many people have already experienced, and they find the conversation deeply personal. When Sarah McSweeney, who had cerebral palsy, was hospitalized before she died in 2020, doctors were confused when someone from her group home brought paperwork expressing her wishes regarding medical care. Staff members were puzzled as to why she didn’t have a do-not-resuscitate order in place.
People close to her were stunned by the implication. Because McSweeney was disabled and could not speak for herself, they assumed that her life was less valuable than a nondisabled person’s. McSweeney’s story is a perfect example of what advocates call one of the most pernicious, toxic forms of healthcare discrimination: not overt hostility, but insidious assumptions rooted in ableism about whose life is worth saving.
Yet disability rights groups were already aware that, in some states, emergency triage plans could lead to disabled people being treated like an afterthought and unable to access life-saving care. Some policies were created based on personal opinions about long-term survival, independence, or ‘quality of life’—standards that could be deeply ableist.
For many disabled Americans, the pandemic exposed something deeply unsettling about the healthcare system: laws and policies that appeared secure can become fragile under pressure. This is why the federal overhaul of nondiscrimination laws in healthcare has so many people concerned. The laws under investigation should reinforce protection against discrimination in healthcare settings.
They focused on everything from inaccessible medical equipment to artificial intelligence and automated decision-making systems capable of inadvertently reinforcing bias. In healthcare nowadays, decisions are no longer limited to the doctor and patient.
More and more, treatment decisions are guided by data models, predictive algorithms, insurance systems, and digital tools. Disability advocates have cautioned that, with weak oversight, those systems can rely on long-standing prejudices in ways patients may never even witness. Critics of the rules state they impose burdens on providers and insurers. But disability rights organizations worry that the broader implications of weakening them will be cultural as much as legal. They fear it would imply that disability protections are negotiable—dependent on politics, budgets, or administrative priorities.
These consequences unfold in moments of real vulnerability: emergency room visits, ICU admissions, denied treatment, and end-of-life decisions. Discrimination in healthcare is rarely explicit. Few patients are directly told their lives matter less than others.
More often, discrimination appears subtly—through delayed care, inaccessible services, assumptions about quality of life, or decisions made by people who believe they are acting in someone’s best interest. For disabled Americans, that subtlety can make the threat especially difficult to confront. The federal review process will likely take months, and any major changes could face legal challenges.
But this dispute already reveals a larger trend in American health care—civil rights protections that once appeared settled are increasingly being renewed or renegotiated. For the disability community, the issue is not just legal language. It is about whether, in times when life itself is on the line, the system treats disabled lives as equally worth fighting for.
Sources:
Diament, Michelle. “Feds To Reconsider Rule Barring Disability Discrimination In Healthcare.” Disability Scoop, Disability Scoop, 11 May 2026, https://www.disabilityscoop.com/2026/05/11/feds-to-reconsider-rule-barring-disability-discrimination-in-healthcare/31995/
Garcia, Eric. “Biden Is Wrong. the Pandemic Isn’t over for Disabled Americans.” MSNBC, NBCUniversal News Group, 23 Sept. 2022, https://www.msnbc.com/opinion/msnbc-opinion/biden-wrong-pandemic-isn-t-over-disabled-americans-n1299051.
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.