Barriers to Inclusion of Individuals with Disabilities in the Scientific Workforce

On December 3rd of this year, the United Nation’s International Day of Persons with Disabilities was observed. As we continue to strive to establish a culture of inclusive excellence in the scientific workforce, it is important that we consider the unique situation faced by those with disabilities.

Disability in the Scientific Biomedical Workforce

Individuals with disabilities have been identified as an underrepresented population in the biomedical workforce. The amended Americans with Disabilities Act of 1990 defines an individual as having a disability if they have "a physical or mental impairment that substantially limits one or more major life activities." It is important to keep in mind that a person can have a disability that is not readily apparent. For example, a person with a sitting disability caused by chronic back pain may show no sign of their disability when they are standing up.

The NIH encourages institutions to diversify their student and faculty populations to enhance the participation of individuals from underrepresented groups, including those with disabilities. Including individuals with disabilities is not just a matter of fairness or following the law, it’s also important for the advancement of science. Including individuals with disabilities means including people who have different ways of thinking, different viewpoints, and different skillsets. When approaching many problems in science, it is imperative to incorporate unique perspectives in problem-solving styles as this can broaden the scope of inquiry. Diversity increases creativity and performance, and is a key component of achieving innovation-related goals.

According to the CDC, one in four U.S. adults (61 million people) report having a disability [1]. However, according to a study by the NSF, only 7.8% of science and engineering doctorate recipients reported having a disability. These data suggest that in spite of efforts to enhance inclusion accessible opportunities to enter the scientific workforce are not available to all.

Barriers to Inclusion

In addition to being underrepresented, individuals with disabilities face multiple barriers as they attempt to enter and navigate biomedical careers [2]:

• Lower levels of career success when compared to their nondisabled peers
• Less likely to complete college
• Less likely to pursue a STEM (science technology, engineering, and mathematics) degree
• Less likely to earn a postsecondary degree
• A lack of role models in senior leadership roles

Similarly, institutions cite the presence of barriers in providing support to individuals with disabilities. These include having limited resources for staff training and purchasing accessibility-related technology.

Despite the challenges, there is a growing number of success stories from individuals with disabilities who managed to not only overcome these barriers, but also thrive [3]. But these are anecdotal reports and what is needed to address this area of inclusion is data. Dr. Bonnielin Swenor, an assistant professor of ophthalmology (who also has an invisible disability of low vision and for years did not discuss her disability with peers), points out that there currently is a lack of data on the number of people with disabilities within the scientific workforce [4].

Approaches to Overcoming Barriers

The first step towards inclusion is to gain an understanding of the community and needs of individuals with disabilities. Armed with an understanding of the individual’s context, we can then focus on how to address personal and institutional obstacles.

Overcoming barriers to inclusion for individuals with disabilities has been approached in multiple ways. In education, there are competing approaches of designing educational systems vs accommodation [5]. Proponents of Universal Design for Learning (UDL) attempt to design educational products and environments so they are accessible for all people. In contrast, an accommodation approach seeks to provide specific accommodations to individuals with disabilities on a case-by-case basis.

Another significant method to enhance the inclusion of individuals with disabilities is establishing work environments that are diverse, inclusive and respectful. There are multiple evidence-based approaches that can be taken on an institutional level to help accomplish this goal. Broadly, these involve infusing diversity into administrative structures and policies including recruitment, admissions and hiring processes. Of notable importance are policies to ensure employees are not only supported and treated fairly, but also have the perception that this is the case.

Parting Thoughts

We expect our work to establish cultures of inclusive excellence for underrepresented groups will have a significant impact on individuals with disabilities. For example, the NIH recently released the FIRST Cohort FOA that will support institutional culture change and faculty cohort bring at institutions. One of its stated objectives is to enhance the diversity of FIRST Cohorts by encouraging awardee institutes to actively recruit candidates identified as underrepresented in the biomedical, clinical, behavioral, and social sciences which includes individuals with disabilities.

References

1. Okoro CA, et al., Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep, 2018. 67: p. 882-887. Available from: https://www.cdc.gov/mmwr/volumes/67/wr/mm6732a3.htm?s_cid=mm6732a3_w.
2. Bellman, S., S. Burgstahler, and E.H. Chudler, Broadening Participation by Including More Individuals With Disabilities in STEM: Promising Practices from an Engineering Research Center. 2018. 62(5): p. 645-656. Available from: https://journals.sagepub.com/doi/full/10.1177/0002764218768864.
3. Bellman S and B. S., Perspectives of STEM Students with Disabilities: Our Journeys, Communities, & Big Ideas. 2015: University of Washington. Available from: https://www.washington.edu/doit/perspectives-stem-students-disabilities.
4. Swenor, B. and L.M. Meeks, Disability Inclusion — Moving Beyond Mission Statements. New England Journal of Medicine, 2019. 380(22): p. 2089-2091. Available from: https://doi.org/10.1056/NEJMp1900348.
5. Moon NW, et al., Accommodating Students with Disabilities in Science, Technology, Engineering, and Mathematics (STEM). 2012, Atlanta, Georgia: Center for Assistive Technology and Environmental Access. Available from: https://hourofcode.com/files/accommodating-students-with-disabilities.pdf.