In recognition of American with Disabilities Act Day on July 26, this week’s post is about the low representation of individuals with disabilities in the biomedical research workforce and efforts underway at the NIH to change this.
According to recent education and workforce data, the participation of individuals with disabilities in science, technology, engineering, and mathematics (STEM) fields is improving but at an unacceptably slow rate. The share of academic scientists with one or more visible or invisible disabilities grew from just 6 percent in 1999 to 9 percent in 2019; individuals with disabilities make up about 11 percent of the U.S. general population.
These statistics are from the “Women, Minorities, and Persons with Disabilities in Science and Engineering” report published in April 2021 by the National Center for Science and Engineering Statistics at the National Science Foundation. The report also found that:
- Of all graduates awarded doctoral degrees in the biological and biomedical sciences in 2019, 8.89 percent reported having one or more disabilities.
- Scientists and engineers with disabilities have a higher unemployment rate than those without disabilities and a higher unemployment rate than the overall U.S. unemployment rate in 2019.
- A smaller share of scientists with disabilities received research assistantships, traineeships, or internships or had fellowships, scholarships, or grants than did those without disabilities.
Other research confirms the lack of representation of people with disabilities along the academic and biomedical career pathways.
- Students with disabilities indicate interest in and intent to major in STEM fields at the same rate as their peers without disabilities, but they do not receive an undergraduate degree or pursue STEM graduate studies at the same rates.
- In medical education, data suggests that medical students with physical disabilities constituted less than 1 percent of learners in 2019.
Barriers to Inclusion
Individuals with disabilities face multiple barriers in the scientific workforce. These include:
- A lack of systemwide recruitment and engagement of individuals with disabilities.
- A lack of data on individuals with disabilities in federal, state, and local databases related to STEM careers and workforce.
- A lack of a standard assessment tool for data collection and evaluation of individuals with disabilities.
- A lack of representation of employees with disabilities on advisory boards and leadership teams at institutions.
- At the institutional level, workplaces have limited staff resources for staff training and purchasing accessibility-related technology.
The absence of mentors and role models is tied to the low persistence rate of individuals with disabilities in STEM fields, as it is for other underrepresented groups in science who benefit from the sense of belonging and identity role models instill. For example, a survey published in JAMA in 2021 examined the prevalence of U.S. practicing physicians with disabilities and estimated an overall disability prevalence of 3.1 percent.
Without faculty mentors who identify as disabled, individuals with disabilities will continue to be underrepresented and potentially disadvantaged during career transitions, perpetuating the cycle of underrepresentation of people with disabilities in the biomedical workforce, according to the authors of a 2019 article on diversity inclusion published in The New England Journal of Medicine.
Diverse Experiences Foster Creativity
Education and workforce inclusion initiatives have historically focused less on individuals with disabilities, despite their low participation and persistence in the science workforce. As a result, the biomedical research enterprise can benefit significantly from the diverse perspectives individuals with disabilities contribute.
The authors of a study on workplace accommodations to support people with disabilities concluded that workplace accommodation could lead to more creative work by disabled and non-disabled employees by enhancing their creative self-efficacy.
Some scientists with disabilities say that coping with everyday life challenges has helped them strengthen their creative skills, ability to concentrate and deal with adversity, and other similar skills. Research suggests that individuals with neurodivergent features—variations in cognitive functioning such as autism, ADHD, and dyslexia—may have a creative edge because such traits are linked to new idea generation and innovative problem-solving.
Despite this evidence, misunderstandings, a lack of inclusivity policies, and biases regarding people with disabilities can prevent their particular talents and abilities from being appreciated in the workforce by the non-disabled population.
How the NIH is Addressing Disability Inclusion
In a December 2020 post, I discussed the systemic barriers to the inclusion of individuals with disabilities in the scientific workforce, such as implicit bias, and suggested evidence-based strategies institutions can take to counter these negative perceptions.
One approach at the NIH is the newly constituted Advisory Committee to the Director Working Group on Diversity (ACD WGD) Subgroup on Individuals with Disabilities. The subgroup will support the working group to assist, in turn, the Advisory Committee to the Director with its advice to the NIH Director on how to best support individuals with disabilities in the scientific workforce.
To start, the ACD WGD subgroup will systematically identify data, strategies, and experiences of individuals with disabilities in the scientific workforce. The subgroup will report its findings in a white paper along with suggestions for how the NIH can improve its efforts to support individuals with disabilities in the biomedical research enterprise. I look forward to sharing the results of the subgroup’s work with you in future COSWD Office communications.
Another effort underway is the NIH Common Fund’s Faculty Institutional Recruitment for Sustainable Transformation (FIRST) initiative. FIRST aims to enhance and maintain cultures of inclusive excellence in the biomedical research community using a multi-pronged approach. In part, FIRST will achieve its goals by funding institutions to hire cohorts of highly qualified, early-career research faculty committed to diversity and inclusion, including individuals with disabilities.
Dr. Bernard’s Reflections
We must engage the full range of diverse talent in the U.S. and ensure working to include individuals with disabilities in the scientific workforce is a priority for the NIH. The COSWD Office’s proactive approach focuses on data collection, education and awareness, and visibility, among other actions that will reduce the barriers to entry for individuals with disabilities and foster their lasting participation in the workforce.