May 28, 2024

NIH repudiates ableism in mission statement

The US National Institutes of Health has taken a stand against ableism, or discrimination against people with disabilities. It is planning to update its mission statement by deleting the word “disability”.

The relevant section of the old statement used to read:

“To seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.”

The proposed statement reads:

“To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.”

A recent article in JAMA explains the reason for the change:

Language matters. The current NIH mission statement suggests erasure, devaluation of an identity and existence that disabled people value and many view with pride. According to the 2011 World Report on Disability, “Disability is part of the human condition. Almost everyone will be temporarily or permanently impaired at some point in life.…” Most disabled people, like others, want to maximize the quality of their lives and, as the proposed mission statement suggests, “optimize their health”—recognizing that the word “health” also has various definitions. Revising NIH’s mission statement is necessary and long overdue. This change will guide the research and medical communities to finally acknowledge modern and community-centered views of disability.

The article attracted a few comments, all questioning the wisdom of the change. A psychiatrist observed: “If one cannot see, one is ‘not able’ to see, and so has a ‘dis-ability’. Call it what you will, but it’s either a lack of visual function or a loss of function. And for many it would cause distress. And for many, any return of vision would be welcomed. There may be some who feel their lives have been changed in a positive way by blindness. That may be true, perhaps profoundly true in an experiential sense. But it won’t help them cross a busy street.”

The mission statement about disability began to evolve in 2013. A deaf employee asked if a phrase which mentioned reducing “the burdens of illness and disability” could be amended. The then-director, Dr Francis Collins, agreed.

“This was a very important event from a diversity perspective,” said the NIH’s diversity management officer at the time. “NIH has no wish to have a mission statement that offends people … It just goes to show you that we all have different perspectives.”