CHEST INITIATIVES

Disabled and Whole

Sharing CHEST’s response to a mission of “reducing disability”

September 27, 2024 | VOLUME 2, ISSUE 3

In 2023, the National Institutes of Health (NIH) shared a request for information from interest group throughout the scientific research, advocacy, and clinical practice communities for input on its mission statement. It 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.”

CHEST responded with a proposed alternative, suggesting that the current phrasing perpetuated the false perception that people with disabilities are “broken.”

CHEST’s suggestion:
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.

“The belief in medicine that disabilities should be ‘cured’ stems from a narrow view of health that sees disability as a flaw to be fixed,” said Stephanie M. Levine, MD, FCCP, a member of the CHEST® Journal DEI Work Group who helped draft CHEST’s response. “This cure-focused view reinforces societal stigma that disabilities are undesirable, contributing to feelings of inadequacy among patients.”

Stephanie M. Levine, MD, FCCP

Stephanie M. Levine, MD, FCCP

Additionally, the focus on a “cure” for disabilities as a goal for optimal health erases the experience of many patients with disabilities for whom there is no cure. For some patients, a disability is lifelong and is something that will constantly impact their health.

“Shifting away from this mindset allows for more patient-centered care, empowering individuals to define their own health goals and fostering greater collaboration between patients and providers,” Dr. Levine said. “It reduces stigma, promotes inclusivity, and supports better mental health and well-being.”

That is not to say that research into curable conditions is not worthwhile. “A balanced approach that embraces both acceptance of disabilities and the pursuit of cures when needed could provide the most comprehensive care,” she said.

To date, the NIH has not changed its mission statement. But when it does, CHEST hopes it will consider the input from the disability rights community and collaborate with people who have lived experience in this area.

Read CHEST’s full letter to the NIH »


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