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Ableism & Healthcare Now is an independent research and analysis project about how structural ableism shapes healthcare and public health.

Ableism & Healthcare Now written in pink and black text over an opaque picture of a hospital hallway
Logo for Ableism & Healthcare Now

Why Is This Project Needed?

Research on structural ableism and health by disabled scholars is systemically unsupported [1]. In 2018, only 1.2% of awardees of National Institutes of Health (NIH) grants reported a disability [2], and it was only in 2023 that the NIH recognized disabled people as a national health disparity priority population [3]. While there were signs of increased interest in research on ableism and health following this [4], the future of this work remains uncertain in 2025 as words like "disabled" and "discrimination" are scrubbed from public documents [5].

Health policymakers rely, at least in part, on research and analysis to make public health and healthcare decisions [6]. Currently, most public health and healthcare research still centers nondisabled perspectives. This is reflected in national and global health policies that are heavily biased towards efforts to "cure" disability over allocating resources towards dismantling structural ableism [7]. Notably, this is reflected in the mission statement of the NIH itself which includes the phrase "to enhance health, lengthen life, and reduce illness and disability" [8].

This project seeks to publish research and analysis about structural ableism and health foremost to push back on the large amount of health research every year that still relies on ableist methodologies and makes ableist conclusions. Beyond that, the project also seek to shift the values and priorities of policymakers toward health policies that center the perspectives and needs of disabled people.

Ableism is deeply ingrained in society and within public health and healthcare [9]. It is often internalized, even by disabled people, and requires ongoing attention to unlearn [10-12]. This project invites everyone on a journey to further unlearn and divest from ableism (including its writers). At the same time, it seeks to hold policymakers responsible for ableism in public health and healthcare, as these are the individuals and groups who continue to uphold ableist policies, practices, and norms despite ongoing pushback and feedback from disabled people.

Structural ableism affects the health of disabled people in a myriad of ways that differ across communities [13-14]. This project is not an effort to examine all of the pathways by which structural ableism influences health. Instead, it addresses a few themes each volume in an attempt to generate meaningful dialogue and impact.

Research Themes Explored in This Project

The current volume is exploring three research themes:

  1. Ableism in quality-adjusted life years and disability-adjusted life years,
  2. How time functions within healthcare and public health systems and the ways “crip time” challenges these normative concepts of time,
  3. The exclusion of disabled, mad, and neurodivergent people from health system leadership and how this affects health policy and healthcare decision-making.

Scholarship Without Permission

Ableism & Healthcare Now's publishing approach is a deliberate attempt to circumvent the barriers that disabled scholars often face in research and academic publishing [13]. The public health research system is fundamentally misaligned with the occupational needs of disabled researchers [15-16]. This forces disabled people out and prevents them from advancing into positions of leadership [1]. 

Ableism & Healthcare Now is open-access and free to read. Readers interested in supporting the project's growth can opt into an optional monthly donation. Otherwise, this project is independently written and receives no external funding.

In addition to publishing here on this website and via a newsletter, all Ableism & Healthcare Now research and analysis is published on a preprint sever in a PDF format so it is citable with a permanent link and discoverable via research databases. This website is hosted on Ghost, a non-profit, independent publishing platform that is designed to be easy to read and accessible.

Research and analysis on Ableism & Healthcare Now is not peer-reviewed, unless it is clearly identified as such. In the case of peer-review, the project follows an open science model where reviewers are identified and reviews are published. Because preprint severs support uploading new versions of articles and archiving prior versions, articles published on Ableism & Healthcare Now (unlike traditional academic journals) may be further revised after initial publication to incorporate feedback and expand on issues that emerge in public or scholarly debate.

Contact Ableism & Healthcare Now

If you'd like to get in-touch with Ableism & Healthcare Now or encounter any accessibility issues, please reach out via email at contact@ableismnow.org.

References

  1. Rotenberg S. Integral to inclusion: amplifying public health leaders with disabilities. Lancet Public Health. 2021;6(8):e543. doi:10.1016/S2468-2667(21)00141-9
  2. Swenor BK, Munoz B, Meeks LM. A decade of decline: Grant funding for researchers with disabilities 2008 to 2018. PLoS One. 2020;15(3):e0228686. doi:10.1371/journal.pone.0228686
  3. NIH designates people with disabilities as a population with health disparities. National Institutes of Health (NIH). September 25, 2023. https://www.nih.gov/news-events/news-releases/nih-designates-people-disabilities-population-health-disparities
  4. Rose Broderick O. Q&A: Why the NIH is spending $30 million to counter ableism in health care. STAT. October 8, 2024. https://www.statnews.com/2024/10/08/disability-health-equity-nih-funding-research-ableism/
  5. Yourish K, Daniel A, Datar S, White I, Gamio L. These Words Are Disappearing in the New Trump Administration. The New York Times. https://www.nytimes.com/interactive/2025/03/07/us/trump-federal-agencies-websites-words-dei.html. March 7, 2025. Accessed July 24, 2025.
  6. Haynes AS, Gillespie JA, Derrick GE, et al. Galvanizers, guides, champions, and shields: the many ways that policymakers use public health researchers: Ways that policymakers use public health researchers. Milbank Q. 2011;89(4):564-598. doi:10.1111/j.1468-0009.2011.00643.x
  7. Lundberg DJ. Disability and Health State Utility Values: A Framework for Assessing Ableism and Equity. Value & Outcomes Spotlight. July/August 2023;9(4):32-35. https://www.ispor.org/publications/journals/value-outcomes-spotlight/vos-archives/issue/view/global-threats-from-climate-change/disability-and-health-state-utility-values-a-framework-for-assessing-ableism-and-equity
  8. Mission and Goals. National Institutes of Health (NIH). Accessed July 24, 2025. https://www.nih.gov/about-nih/mission-goals
  9. Lundberg DJ, Chen JA. Structural ableism in public health and healthcare: a definition and conceptual framework. The Lancet Regional Health – Americas. 2024;30. doi:10.1016/j.lana.2023.100650
  10. Campbell FAK. Exploring internalized ableism using critical race theory. Disabil Soc. 2008;23(2):151-162. doi:10.1080/09687590701841190
  11. Friedman C. Explicit and implicit: Ableism of disability professionals. Disabil Health J. 2023;16(4):101482. doi:10.1016/j.dhjo.2023.101482
  12. VanPuymbrouck L, Friedman C, Feldner H. Explicit and implicit disability attitudes of healthcare providers. Rehabil Psychol. 2020;65(2):101-112. doi:10.1037/rep0000317
  13. Valdez RS, Swenor BK. Structural Ableism - Essential Steps for Abolishing Disability Injustice. N Engl J Med. 2023;388(20):1827-1829. doi:10.1056/NEJMp2302561
  14. Christakis DA, Iezzoni LI. Calling on the USPSTF to Address Ableism and Structural Ableism. JAMA. Published online September 25, 2023. doi:10.1001/jama.2023.17092
  15. Levitt JM, Thelwall M, Moreira F. Identifying disability-related barriers to academic employment. Stud High Educ. 2024;49(11):2104-2115. doi:10.1080/03075079.2023.2290634
  16. Castro F, Cerilli C, Hu L, Iezzoni LI, Varadaraj V, Swenor BK. Experiences of researchers with disabilities at academic institutions in the United States. PLoS One. 2024;19(8):e0299612. doi:10.1371/journal.pone.0299612