What we found when we reviewed 57 studies on how science talks about disability, race, and rare disease.
An RLiS Research Digest
Accessible summaries of what RLiS research found, why it matters, what is working, and what questions remain.
Language is never neutral. In science and healthcare, it shapes how people are perceived, studied, treated, and invited—or not invited—into the work. Sometimes the consequences are obvious. Words such as abnormal, defect, and burden can frame a person’s body or life as the problem. Other times, the harm begins with something that appears almost small.
During an early RLiS community conversation, one rare disease advocate described a condition with a long scientific name and an unfortunate acronym: B.O. Imagine trying to build a movement among young people who are expected to introduce themselves by saying, “I have B.O.”
That name does more than create an awkward moment. It can affect whether people search for the condition, identify with the community, participate in advocacy, or join a research study. It is a reminder that scientific language does not remain inside journals. It travels into clinics, families, classrooms, fundraising campaigns, policies, and people’s understanding of themselves.
That is the premise behind the Rethinking Language in Science project:
When language includes us, science can’t ignore us.
RLiS Quick Take: What We Reviewed
The RLiS literature review analyzed 57 sources across 21 academic disciplines, drawing from biomedical, psychological, social science, policy, technology, disability studies, and community advocacy literature. The review included peer-reviewed research as well as credible grey literature and community scholarship because some of the field’s most important thinking has developed outside traditional academic journals (Dopson & Gray, 2026).
We intentionally prioritized work authored by disabled scholars, research centering disabled people of color, community-based participatory research, and publications from advocacy organizations.
The RLiS perspective: A biomedical-only review would have risked repeating the problem we were studying—allowing institutions to remain the primary authority on communities whose lives they do not share.
The Absence Was Part of the Evidence
We went looking for community voices. We prioritized them in our search design. We weighted them in our inclusion criteria.
They were still the smallest slice of the literature.
| Where the research comes from | Share of sources |
|---|---|
| Health and Medical Sciences | 35.4% |
| Social Sciences and Humanities | 29.1% |
| Policy and Systems | 16.6% |
| Community and Advocacy | 8.4% |
Source: Dopson & Gray (2026).
Read that final row again. In a body of literature about disabled people, people of color, and rare disease communities, Community and Advocacy sources represented only 8.4% of the material—even in a review designed to find and include them.
Disability Studies and Biomedical Sciences were tied as the largest individual disciplines, at 14.6% each. Two fields can study the same human beings while beginning from very different ideas about the body, identity, health, expertise, and what counts as a problem (Dopson & Gray, 2026).
That does not mean medical knowledge is unnecessary. It means the room remains incomplete.
What We Learned So Far
The literature does not give us one universal answer for how science should talk about disability, race, and rare disease. It does reveal four areas that deserve greater attention as RLiS moves from reviewing the field to conducting community-informed research.
Names Matter
Condition names, acronyms, diagnostic labels, and research categories affect more than scientific precision. They influence public awareness, identity, participation, advocacy, and whether people feel that a field of research sees them accurately.
The review also demonstrates that naming is connected to power. Institutions have historically held greater authority to define disability and disease, while communities have often had to organize to challenge the language applied to them (Dopson & Gray, 2026).
Medical Communication Needs Work
Scientific accuracy does not automatically create humane communication. The literature documents persistent gaps between the inclusive practices healthcare professionals support in principle and the language they use in practice (Crocker & Smith, 2019; Dopson & Gray, 2026).
This issue extends beyond word choice. How clinicians discuss diagnosis, prognosis, treatment, uncertainty, pain, and quality of life can shape trust and future engagement with care.
There is also evidence that education can help. Targeted disability education improved nursing students’ attitudes, knowledge, and skills, while a global evidence review identified systematic disability training as an important pathway for strengthening both clinical practice and language competency (Edwards et al., 2022; Rotenberg et al., 2022).
Definitions Are Contested
Words such as care, treatment, cure, function, normal, and quality of life can appear straightforward while carrying very different meanings across clinical, research, family, and community settings.
The same tension appears in debates over person-first and identity-first language. For some people, person-first language affirms that they should not be reduced to a diagnosis. For others, identity-first language expresses culture, belonging, and pride. The review found that preferences vary across individuals and communities, making universal rules inadequate for every setting (Dopson & Gray, 2026).
The lesson is not that language can never be standardized. It is that standardization should not replace listening.
Existing Models Are Helpful—but Not Enough
The literature includes important frameworks: person-first and identity-first language, the medical and social models of disability, intersectional analysis, strengths-based approaches, and the disability rights principle “Nothing About Us Without Us.”
Each contributes something valuable. The social model shifts attention toward environmental and institutional barriers. Intersectional approaches help researchers examine how race, disability, gender, class, and other identities shape one another. Community self-determination challenges the assumption that professional expertise should automatically override lived experience.
But the review did not identify one approach that fully integrates rare disease experience, disability justice, racial justice, community authority, and emerging health technology into a shared framework (Dopson & Gray, 2026).
What the Literature Says Is Working
The literature is not only a record of harm. It also gives us evidence about practices worth building upon.
Community Leadership Changes Research
Rare disease patient advocacy groups are taking on increasingly significant roles in research, including identifying priorities, building partnerships, supporting study design, and helping connect researchers with communities. These collaborations offer practical examples of community knowledge improving scientific work rather than merely commenting on it after decisions have been made (Patterson et al., 2023).
Focused Education Can Improve Practice
Disability competency is teachable. Research on nursing education and health-worker training suggests that structured education can improve knowledge, attitudes, and practical skills, particularly when disability is treated as a substantive area of competency rather than a short awareness exercise (Edwards et al., 2022; Rotenberg et al., 2022).
Organized Advocacy Can Change Official Language
Rosa’s Law demonstrates that institutional language is not permanent. Advocacy led by people with intellectual and developmental disabilities and their families resulted in the replacement of stigmatizing terminology in federal law. The change illustrates what can happen when communities gain an advocacy platform, political support, and meaningful authority over the language used about them (Dopson & Gray, 2026; Rosa’s Law, 2010).
Intersectional Approaches Improve the Questions
The strongest emerging work does not isolate disability from race, culture, gender, class, or other systems of power. Instead, it asks how those identities and systems interact in research, healthcare, policy, and everyday life. The literature treats this approach not as an optional addition, but as necessary for accurately understanding how people experience scientific language (Dopson & Gray, 2026).
Community leadership. Focused education. Intersectional analysis. Institutional accountability.
The research does not yet tell us exactly how to scale that formula—but it gives RLiS a promising place to begin.
What Comes Next
The literature suggests that changing a few terms will not be enough. Meaningful transformation requires shifts in who leads research, whose knowledge is treated as credible, how language decisions are made, and how institutions evaluate whether their practices are working (Dopson & Gray, 2026).
RLiS will use the next phase of research to examine those questions with patient advocates, disabled people, people living with rare diseases, clinicians, researchers, and other partners.
We are not beginning from the assumption that communities need science to hand them the right words.
We are beginning from the recognition that communities already hold knowledge science needs.
The Conversation Continues
- What would change in science if the people being described had equal power to shape the language—and if researchers studied what those communities were already doing well?
- How do names and labels affect people’s willingness to seek information, identify with an advocacy community, participate in research, or publicly discuss a condition?
- Which training practices lead to lasting changes in communication, and how do patients and families define a respectful and useful clinical conversation?
- Which words create the greatest disagreement across communities and institutions, and what decision-making process helps people navigate that disagreement without erasing context?
- Which elements of existing frameworks work well across settings, where do they conflict, and what is still needed for people of color living with rare diseases?
Why We Wrote This
Most people will never read 57 sources across 21 disciplines. This Digest is our effort to make the central findings useful and accessible without requiring a university login.
The full literature review offers deeper analysis of the history, frameworks, conflicts, promising practices, and unanswered questions summarized here. This Digest is the front door—not the entire house.
References
Crocker, A. F., & Smith, S. (2019). Person-first language: Are we practicing what we preach? Journal of Multidisciplinary Healthcare, 12, 125–129. https://doi.org/10.2147/JMDH.S140067
Dopson, R., & Gray, K. (2026). Rethinking language in science: A literature review on inclusive language practices in disability and rare disease research. The NAMED Advocates.
Edwards, A. P., Cron, S., & Shonk, C. (2022). Comparative effects of disability education on attitudes, knowledge and skills of baccalaureate nursing students. Nurse Education in Practice, 61, Article 103330. https://doi.org/10.1016/j.nepr.2022.103330
Patterson, A. M., O’Boyle, M., VanNoy, G. E., & Dies, K. (2023). Emerging roles and opportunities for rare disease patient advocacy groups. Therapeutic Advances in Rare Disease, 4, 1–12. https://doi.org/10.1177/26330400231164937
Rosa’s Law, Pub. L. No. 111-256, 124 Stat. 2643 (2010). https://www.congress.gov/111/plaws/publ256/PLAW-111publ256.pdf
Rotenberg, S., Rodríguez Gatta, D., Wahedi, A., Loo, R., McFadden, E., & Ryan, S. (2022). Disability training for health workers: A global evidence synthesis. Disability and Health Journal, 15(2), Article 101260. https://doi.org/10.1016/j.dhjo.2021.101260
