Recently, the NAMED Advocates completed another key leg of the data collection for the Rethinking Language in Science Project. The NAMED Advocates research team includes, Dr. Tanya Brice, a leading expert in health communication and research, undertook an exhaustive review of public information to understand the current narrative and language around rare diseases. Dr. Brice’s research involved meticulously analyzing a massive library of resources, including 267 NIH grants and 1,626 PubMed articles, as well as 456 other documents. As they waded through this sea of data, they didn’t just see numbers, they saw a missing narrative and a pattern of “deficit language” that unintentionally sidelines the very people it aims to describe.
The NAMED Advocates team discovered that the prevailing narrative was built on a foundation of “deficit language.” It was a world where a person was defined by what they lacked rather than who they were. In the text of grants and articles, people weren’t simply “living with” a condition; they were described as “suffering from” it. The researchers noted that shifting to asset-based language, like saying someone “who has” a condition, could change the entire perspective. They found “abnormal” used where “variant or difference” would have been more accurate and respectful, and “wheelchair bound” instead of the empowering “wheelchair user.”
But the silence was as loud as the words. Despite the frequent use of terms like “patient engagement” and “community partnership” in nearly 38.5% of the literature, the actual voices of the community were often lacking. In a staggering finding from the 392 PubMed articles specifically analyzed for this, not a single one was community self-determined, and only one was community-led. The people living these lives were being talked about, but they weren’t the ones telling the story.
The consequences of this deficit-based framing are profound. When language consistently focuses on lack and limitation, it not only misrepresents individuals but also perpetuates a cycle where research priorities are dictated by clinical needs rather than the holistic lived experiences of the community. This continuous oversight impacts equitable funding distribution and erodes the essential trust needed between researchers, clinicians, and the very people they serve.
This is why the Rethinking Language in Science Project was born. The NAMED Advocates are committed to building a new language framework that centers on the real stories and perspectives of those living with rare diseases and disabilities. They believe that for science to truly matter, it must listen to the experts by experience.
The story isn’t finished yet, and it needs your voice to be complete. If you have a story to share about living with a rare disease, condition, or disability, the NAMED Advocates want to hear from you. Stay engaged, read the full report on the NAMED Advocates website, and help us rewrite the future of how the world talks about disability.
