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Engineering Justice: Centering Disabled Voices in STEMM

With roughly sixteen percent of the world’s population being disabled, the disabled community makes up the largest minority group in the world. This is why I was shocked when I heard a colleague of mine say that disability ‘just isn’t that interesting’. We both worked at an internship program that focused on health disparities, defined as poor health outcomes due to social factors like racism, homophobia, or transphobia which go on to negatively affect the health of minorities and many communities. Amongst these, the disabled folks are not just one of the most prominent, but also one of the most intersectional and dynamic.

What is Disability? Who is Disabled?

Here’s the deal: there is often a gap between the medical definition of a disability and how the disabled community defines itself. According to Merriam-Webster, disability is defined as “impaired function or ability”. However, many in the disabled community disagree with this definition because they feel it implies that disabled folks are inherently less than others.

Additionally, this definition fails to recognize the vital role social context plays in disability. Many in the disabled community have the perspective that various types of physical or mental functioning are a normal part of human diversity. It is the society they are in that makes them disabled by being inaccessible, unaccommodating, and ableist*.

The Advancement of Science vs. Disability Justice

Fields like biotechnology and medicine, as well as science in general, can focus on pathologization** at the expense of vulnerable communities’ well-being. While science and medicine are fields that look for facts, the way those facts are applied in medicine or society can be subject to biases.

A nationwide study found that over eighty percent of physicians believed that disabled people have a lower quality of life; conversely, over half of disabled people reported having a good or excellent quality of life. This study suggests that physicians are underestimating the ability for disabled folks to live fulfilling, meaningful lives. Additionally, it was found that less than half of the physicians in the survey felt confident in their ability to provide equal quality care to disabled patients despite some physicians having over twenty years of experience.

Figure 1| This figure, put together by the author, compares and contrasts a disability justice approach to the current practices in STEMM fields and how both can work together to achieve a brighter future for science and the disabled community. For more information on the points outlined in this figure, see the “Learn More” section.

Engineering Justice – Diversity, Equity, Inclusion, and Accessibility (DEIA) in Science, Technology, Engineering, Mathematics, and Medicine (STEMM)

To create a more equitable future, we need to find a way to integrate disabled voices into STEMM fields. One way to ensure disabled people are heard in STEMM is by providing professionals, such as healthcare workers, better Diversity, Equity, Inclusion, and Accessibility training, as many providers and medical students feel they are not trained to properly provide care to disabled folks. Additionally, we must not merely consult the disabled community when we want to do research or create products that affect their lives. We should make a space for disabled folks to conduct scientific research themselves. We can do this by fostering a workplace that is more flexible, accommodating, and willing to make modifications to job duties. In conclusion, to create science FOR communities, scientists should be working WITH communities, disabled voices should be heard, and folks should truly live up to the disability mantra, ‘Nothing About Us Without Us.’ Disabled folks should be encouraged to enter STEMM and those fields should adjust to become more accessible with the ultimate goal to improve the quality of science being done, as research shows that more diverse teams create better, more innovative science.

*Ableist – the act of discriminating against disabled people

**Pathologization – “ to view or characterize as medically or psychologically abnormal”

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