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Rethinking Language in Science

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About the Project

Rethinking Language in Science is a multi-year initiative that challenges the harmful language often used in science, healthcare, and research—language that can dehumanize disabled people, particularly those living with rare diseases and intersecting identities.

Grounded in community knowledge and lived experience, this work aims to reshape how disability, illness, and rare conditions are discussed, understood, and represented.

At its core is a central question: what would research look like if the people most affected by this language helped shape it?

To stay in the loop about upcoming RLIS efforts, please complete this brief interest form.

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About the Project

Rethinking Language in Science is a multi-year initiative that challenges the harmful language often used in science, healthcare, and research—language that can dehumanize disabled people, particularly those living with rare diseases and intersecting identities.

Grounded in community knowledge and lived experience, this work aims to reshape how disability, illness, and rare conditions are discussed, understood, and represented.

At its core is a central question: what would research look like if the people most affected by this language helped shape it?

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Research

We examine how scientific language shapes perception, treatment, and policy — particularly for individuals living with rare diseases and conditions — and how it can reinforce or dismantle ableism.

An initial literature review revealed several important insights:

  • Tension between disability models: Ongoing conflict between the medical model (focused on fixing conditions) and the social model (focused on removing systemic barriers).
  • Contrasting language frameworks: Biomedical research often uses deficit-based language, while disabled communities emphasize identity, autonomy, and lived experience.
  • Need for community-centered research: People living with rare diseases are rarely asked how they want to be described—highlighting a critical gap this project aims to address.

We want to hear from you. Your experiences with the words used to describe your health, your body, and your community matter.

This study is exploring how language in research and healthcare can be more respectful, more accurate, and more just.

Thank you! The Rethinking Language in Science survey is now closed. We are deeply grateful for the overwhelming response to this project. In just a short time, our community stepped forward and shared their experiences, far beyond what we expected. Your voices will help shape how healthcare providers, researchers, technologists, and policy makers talk about disability and rare disease. Thank you for trusting us with your stories.

To learn more about upcoming interviews, surveys, focus groups and to stay in the loop about upcoming RLIS efforts, please complete this brief interest form.

Have questions? Contact the research team at: research@namedadvocates.org

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Resources

Educational materials, explainers, and tools designed to support advocates, researchers, and community members seeking more just and inclusive language practices in science and health — especially as they relate to rare diseases and conditions.

Literature Review
The Rethinking Language in Science: A Literature Review on Inclusive Language Practices in Disability and Rare Disease Research provides the research foundation for the RLiS initiative. Drawing from 57 sources across 21 academic disciplines, the review examines how language influences disability and rare disease research, healthcare, policy, and emerging technologies such as artificial intelligence. It explores the historical and ongoing impact of language on marginalized communities while offering recommendations for more equitable, community-informed research practices that center Disability Justice and health equity.

Download the full literature review here.

Read more resources here.

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Advisory Council

The Advisory Council is made up of disabled leaders, advocates, and thinkers — including individuals with lived experience of rare diseases and conditions — who help provide valuable input in how the project grows, ensuring accountability to community values and lived realities.

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