By Rowan Dunbar, C2ST Intern, University of Illinois Chicago

In part one, Engineering Justice: Centering Disabled Voices in STEMM, we learned more about how STEMM fields (Science, Technology, Engineering, Mathematics, and Medicine) need to incorporate disabled folks to create more innovative science. To dive deeper into the issues currently faced by disabled folks in the workforce and academia, I spoke with Timotheus “T.J.” Gordon, Jr., an autistic researcher and disability advocate. He has done work surrounding intersectionality within the disabled community, specifically neurodiversity and the black community, sexuality and disability, and self-advocacy.

Importance of Intersectionality and Disability 

Intersectionality is about how every aspect of your identity comes together to shape your lived experience. Intersectionality within the context of disability is about how aspects of your identity (race, gender, socioeconomic status, etc.) affect access to essential specialty care. Approaching disability with this lens is about getting a more holistic view of the lived experience of disability. 

On the Current Field of Research 

While speaking with Gordon, I asked him what barriers he thinks currently exist in the field of research that present challenges to the hiring, retention, and ultimately success of disabled scholars and scientists. Currently, two of the major issues are an emphasis on formal education and a lack of livable wages. 

Gordon went on to say that in academia, there is a difference between having a doctorate (a PhD) and a master’s degree, with a doctorate typically giving you the ability to do more independent, impactful research. This poses an accessibility issue because most PhD programs lack flexibility. There is no opportunity to create a more artistic or expressive piece as your dissertation*, which restricts how people can find themselves in their work, meaning that they could do their work in a way they feel passionately about and in a way that they feel represents them authentically. Gordon said that feeling passionate about their work is key to working despite burnout**. Limiting creativity also prevents scholars from using culturally relevant mediums, like poetry or art, to communicate their research, ultimately widening the gap between researchers and the disabled community. Additionally, this dissertation is a technical paper, meaning that it often does not use plain language, which is a major accessibility tool. He also notes that most PhDs, especially those in disability studies, focus a lot on theory instead of community-based work and care. Basically, academia tends to separate itself off from the lived reality communities and people face.  

Regarding livable wages, which is an up-and-coming issue, Gordon brings attention to the fact that many disabled folks have increased living expenses due to needing things like mobility aids, accessibility devices, frequent appointments, transportation to appointments, accessible living spaces, medications, etc. To build upon Gordon’s point here, a lack of livable wages is an additional barrier to creating disabled scholars. This is because PhD stipends across the U.S. are often not enough to cover living expenses for non-disabled folks, with a study finding that stipends are significantly lower than the living wage in some areas, and with increased living expenses, we can assume this issue would only be worse for disabled folks. 

How Science Can Move Forward

While it may seem straightforward, STEMM still has a long way to go to make careers in research a reality for disabled folks. While Gordon and I discussed some of the more apparent issues barring disabled folks from academia, there are many other aspects of academia that limit the ability of disabled folks to enter and succeed in the field. Here are some suggestions that can help the retention of folks with disabilities: 

Accessibility: Getting In 

• Place value on experience and formal education, and look at experience holistically  
• Use more plain language and visuals in academia  
• More flexible PhD programs  
• Livable graduate stipends 

Retention: Making Sure Disabled Scholars Can Succeed  

• Livable wages and comprehensive benefits  
• Comprehensive health insurance, paid medical leave, etc
• Accommodations and Accessibility – the workweek 
• Modifications to the standard work schedule, such as more frequent breaks throughout the day or not working forty or more hours a week  
• Changing culture surrounding high productivity that is expected in academia 
• Reducing expectations, like the ability to travel frequently to present at conferences or often socialize 
• Mentorship is essential to a career in research, with studies showing that mentorship is key to self-efficacy and career satisfaction among young researchers. Additionally, research shows that minority students receive less mentorship. 

Conclusion

While we continue to work towards a future that is better for science and disabled folks by reducing barriers to disabled scholars entering and thriving in the field, it is also important for current scholars to move forward with cultural competency***. In order to foster more understanding between researchers and the disabled community, Gordon urges scholars and STEMM professionals to use disabled folks as a primary source, saying, “We live the life every day.”

*Dissertation – A research paper that is lengthy and focuses on a particular topic of interest (some highly specialized area that the author has experience in) and is required to earn a doctorate degree (PhD or Doctorate of Philosophy).

**Burnout – A term used to describe feelings of fatigue, inadequacy or decreased efficiency, and negativity towards your job.

***Cultural competency – Listening to minorities with empathy and trusting them to be experts on their own experience.

To learn more about

• Chicagoland Disabled People of Color Coalition
• Black Autistic Joy,  a piece by T.J. Gordon 
• The Black Autist T.J. Gordon’s Blog 
• Limitations of wage under 14c, a federal law that allows companies to pay disabled workers less than minimum wage to account for potentially decreased productivity compared to a nondisabled worker
• More on how we know accessibility becomes a major issue in academia and graduate programs, not undergraduate education
• Importance of Mentorship in Science  
• More on Occupational Burnout
• More on Autistic Burnout
• Autistic Burnout in the Workplace

Resources

1. cnsmaryland.org/2023/03/29/grad-student-stipends-often-fall-short-of-the-living-wage/
2. https://doi.org/10.2139/ssrn.4058599
3. https://doi.org/10.1021/acscentsci.3c00500
4. www.thetransmitter.org/spectrum/autistic-burnout-explained/
5. https://doi.org/10.1186/s12919-017-0083-8
6. https://doi.org/10.1016/j.tins.2021.04.004