On 26th September 2023 the United States-based National Institutes of Health (NIH) officially designated people with disabilities as a population with health disparities. The NIH is the largest funder of medical research in the world, and specifically monitors minority health and health disparities research, but until now the organisation has not included funding or monitoring for the health disparities, discrimination, or intersectional barriers faced by disabled people.
It seems that acknowledging and researching health disparities comes as a natural consequence for groups that fight for civil rights, and this delay is no surprise as disability rights are a long way behind the rights of BIPOC, gender, and LGBTQAI+ communities.
This new designation comes with two bonuses:
(1) New funding opportunities for research into understanding and addressing the intersecting impact of disability, race and ethnicity, and socioeconomic status on healthcare access and outcomes.
(2) Revising the NIH’s mission statement to remove the phrase “reduce illness and disability”. As we don’t say “reduce gender” or “reduce race”, this will be more inclusive of the disability community who have raised concerns about the eugenicist undertones of the old phrasing.
Public consultation is open now until 24 November 2023 to suggest more inclusive updates to the NIH mission statement.
The NIH now officially acknowledges that people like me exist, that we face health disparities, and that our health and our lives are worth investing in. While it may seem like a formality, as a disabled First Nations woman in STEM, living with and researching disability and health disparities, I have directly seen how this lack of designation has led to blind spots and data deserts in medical research and healthcare services.
This development is freeing, and brings relief and hope. It frees up people like us to be a little bolder, speak a little louder, and stop wasting precious time and energy constantly justifying things that are obvious to those who live and work in those intersectional blind spots.
[Top Image: An image showing the National Institute of Health’s logo, a rectangle with a triangle inverted sideways with ‘NIH’ in bold.]