A field guide to the frameworks shaping how we talk about disability, race, and rare disease.
An RLiS Field Guide
Quick reference tools from The NAMED Advocates for recognizing the frameworks that shape how we talk about disability, race, and rare disease.
In 1961, Fannie Lou Hamer entered a Mississippi hospital to have a uterine tumor removed. She came home without her reproductive organs. No one asked. No one told her (Blain, 2021; Roberts, 1997).
The chart would have recorded a hysterectomy. Routine. Indicated. Complete.
But Black women in Mississippi already had their own name for what was happening to them. They called it a Mississippi appendectomy—a phrase Hamer carried into public testimony for the rest of her life (Blain, 2021; Roberts, 1997).
Two names. One operating room.
The institution names the condition. The community names the harm.
That gap is where every language debate actually lives. Long before anyone argues over person with a disability versus disabled person, a prior question has already been answered—usually without us in the room.
Who wrote the dictionary?
RLiS Quick Take
What is a framework? Within RLiS, a framework is a way of organizing how we understand a problem and decide what to do about it. It shapes the questions we ask, the evidence we trust, who we recognize as an expert, and what solutions we believe are possible.
Language disagreements are usually framework disagreements. Two people can both value dignity and reach opposite conclusions because they started from different assumptions about disability, medicine, identity, and power.
Our literature review identified the frameworks below that currently shape language in disability and rare disease research (Dopson & Gray, 2026). They are not opposites, and this is not a scorecard. Most organizations—probably yours—borrow from both columns without ever naming which one they’re standing in.
Field Guide to Language Frameworks
| Biomedical & Institutional | Community & Justice-Oriented |
|---|---|
| Universal Person-First Mandate—Requires “person with X” as a one-size-fits-all respect standard. Sounds like: “Our style guide requires person-first language in all publications.” | Identity-First Language—“Disabled person,” “Autistic person,” and “Deaf person” as expressions of pride, culture, and belonging. Sounds like: “I’m not a person with autism. I’m Autistic. It’s not something I carry; it’s how I think.” |
| Institutional Standardization—Hospitals, universities, and publishers apply uniform rules across all conditions. Sounds like: “We need one consistent term across the whole system.” | Community Self-Determination—Communities define their own terms rather than accepting labels chosen for them. Sounds like: “Ask us what we call ourselves.” |
| The Cancer Analogy Fallacy—Treats every condition like a disease to be fought, borrowing battle metaphors that don’t fit every life. Sounds like: “We say ‘person with cancer,’ so we should say ‘person with autism.’” | Reclaiming Definitional Authority—Challenges institutional definitions of disability, illness, and normalcy. Sounds like: “Who decided that was the abnormal one?” |
| Professional Gatekeeping—Clinicians and researchers determine correct language without community consultation. Sounds like: “The clinical team reviewed the terminology.” | “Nothing About Us Without Us”—No policy, research, or terminology about a community without its direct leadership. Sounds like: “Who from the community is on this committee, and can they vote?” |
| Language Subjugation—Imposes institutional priorities over lived experience. Sounds like: “That’s just what we’re required to call it.” | Intersectional Approaches—Recognizes disability language as shaped by race, gender, class, and culture at once. Sounds like: “You can’t separate her race from her diagnosis. Neither could her doctor.” |
| The Medical Model—Locates disability inside the body as something to fix. Sounds like: “The patient is wheelchair-bound.” | Social & Strengths-Based Approaches—Locates disability in barriers and environments, and names community assets. Sounds like: “She’s not confined by the chair. She’s confined by the stairs.” |
Two Things Worth Knowing
Neither column is the villain. The United Nations recommends person-first language across its communications and does so in good faith—while also advising that the rule doesn’t fit every disability and that you should ask people how they identify (United Nations, n.d.). Meanwhile, in one study of nearly 300 Autistic adults, identity-first language was overwhelmingly preferred. Both facts are true at the same time (Taboas et al., 2023).
The disagreement isn’t really about grammar. It’s about who holds authority. That’s why the same organization can adopt respectful language and still get it wrong—respect handed down is a different thing than respect asked for.
Use This
- Which column does your organization’s language actually come from?
- Which of these have you experienced without knowing it had a name?
- Whose framework is currently deciding how you’re described?
The Conversation Continues
Tell us which ones you recognized.
Why We Wrote This
Rethinking Language in Science (RLiS) began with a literature review—a look at how disability, racial justice, and rare disease communities have been reshaping scientific language for decades, and where those efforts still fall short (Dopson & Gray, 2026).
One thing we didn’t expect to find: how many frameworks were already in the room.
People argue about language every day without knowing they’re standing inside a framework someone else built. This field guide is our attempt to make those frameworks visible—because you can’t choose a framework you can’t recognize, and you can’t challenge one you’ve never been told exists.
References
Blain, K. N. (2021). Until I am free: Fannie Lou Hamer’s enduring message to America. Beacon Press.
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.
Roberts, D. E. (1997). Killing the Black body: Race, reproduction, and the meaning of liberty. Pantheon Books.
Taboas, A., Doepke, K., & Zimmerman, C. (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, 27(2), 565–570. https://doi.org/10.1177/13623613221130845
United Nations. (n.d.). Disability-inclusive language guidelines. United Nations Office at Geneva. https://www.ungeneva.org/en/about/accessibility/disability-inclusive-language
