When discussing diversity and inclusion in academia, disability can be complicated as there are many different types and accommodations within this one group. Do people have visible or invisible disabilities? What daily impact does disability have on academics and their work? How does disability impact career decisions? What is the intersectionality of disability with other marginalized groups?
I am legally blind with Stargart Disease, and I was diagnosed when I was 13. Blindness is on a spectrum, and legal blindness is vision with 20/200 or worse in the better eye. My vision is right at this cutoff. When people meet me for the first time, I sometimes get shocked reactions when people realize that I am legally blind. Occasionally, people told me—meaning well—that I look “perfectly normal.” But I have been managing my disability for nearly 25 years. My adaptations may appear seamless, but there is a lot that goes on that people don’t see. My hope with this post is to open the eyes of other people to realize some challenges that I have as a disabled academic[1].
- I must advocate for myself
In daily life, I constantly disclose my disability and my accommodation needs. This can be in formal situations, such as starting a new job, or just attending a weekly seminar or workshop. It can also be in the middle of a campus visit that I explain to a cashier at a restaurant that I can’t read their menu on the wall. I had to learn to tell people that I can’t see well and need help.
Disclosure is almost second nature to me at this point, and generally people are understanding for people who can’t see. Despite the surprised reactions that I get from people, my disability is a visible one that doesn’t carry too much stigma with it. Yet even when these conversations go well, these are extra hassles in daily life.
But there are times when disclosures may not go well. People with invisible disabilities fear dealing with the stigma of disclosure. People with chronic fatigue or chronic pain may get different reactions when they share their disability or accommodation needs. At the worst levels, people are questioned whether their disability is real.
Regardless of how well disclosure goes, we also often get follow-up questions. There are times that people try to genuinely understand what I can see, and it isn’t always easy to communicate. I don’t mind these questions that much, but other people with disabilities might be exhausted having to disclose and explain these things all the time. I also will get the occasional inappropriate question (e.g., “Have you tried X to treat a condition you have lived with for decades?”). My main point here is that constant disclosure and advocacy are not trivial things, and those without disabilities should be mindful of this (and perhaps using Google to answer some questions rather than the disabled person you meet).
- I can’t just live anywhere
For people who know me, this point may seem like a joke. I have lived around the world—the U.S., the Netherlands, Australia, and now, Canada. But before I made any of these moves, I was selective of where I applied. I had to consider my disability when applying to colleges, graduate schools, post-docs, and faculty jobs.
I cannot drive with my disability, which is a huge issue in the U.S., Canada, and Australia (among other places). I had to apply to cities that have good public transportation or rideshare. Small college towns were not a reasonable option for me to live. Yet even the best plans can go awry. During the pandemic, my world shrank to a few miles from my apartment as rideshare became too risky.
Some universities may have shuttles or free public transport within their cities. However, this transportation issue is a huge issue for many disabled people. Disabled academics must select themselves out of possible jobs in a cycle because of these issues. Simply put, if your university does not have transportation support in place beyond the campus itself, you are making it harder for disabled academics to work at your university.
- Disability is expensive
Even if you live in a place with good health care, disability reaches out to all corners of your life. Disability costs don’t just appear in doctor’s visits, medication, and support equipment. It appears in all the systems you need to budget in daily life. For example, when choosing housing, I must select a place that is reasonably close to work, public transportation, and basic services (e.g., grocery stores). Usually, this means more expensive urban housing options than living further away from the city. During the pandemic, I relied on grocery delivery as I could no longer take a rideshare to get groceries. I may or may not live close to doctors or other appointments, which require rideshare or public transportation to access. These are just a few examples of how disability is expensive.
Over the years, I have had amazing friends and colleagues give me rides regularly, but we should be providing more support for disabled people to live independently without these extra burdens. Ultimately, when choosing to stay in academia, disabled scholars must consider whether an academic job is worth it compared to industry alternatives that pay more and support them more. In particular, if you live in an urban environment, be mindful of how much you pay your disabled graduate students, post-docs, and faculty.
- Managing a disability takes extra time
Time is everything in academia. We are expected to work long hours to secure a tenure-track position. We all have extra things in our lives that take our time. However, for disabled academics, our disability takes up our time. Regular doctor’s appointments. Long commutes on public transport. Extra paperwork required to prove our disability. Disabilities take time to manage.
Beyond these systems, our disabilities themselves may limit our physical ability to work faster. My reading rate is significantly slower because of my disability. Sometimes I get eye strain when looking at a screen too long. All this means my work can take me more time to do. As such, imposter syndrome takes on a whole new dimension—am I doing enough to keep up with my able-bodied colleagues or am I doing fine?
- I am trying to do my job, not be inspirational
There is a stereotypical disability narrative called a “supercrip.” It refers to the trope of a disabled person as an inspirational figure overcoming their disability. However, the flaw of this narrative is that it neglects the challenging systems that come with the disability. It also can raise questions about whether people with similar disabilities who don’t “overcome” their disability in the same way. This topic is immensely complex, and it also raises issues of intersectionality (i.e., the disability advocacy has been largely White, as noted by Vilissa Thompson).
Supercrip is a damaging stereotype, and it is something that people have said to me regularly over the years. It is tricky for me because I never know how to respond to it. Also, these people have good intentions. They are trying to be nice and supportive by complementing me on how I manage my disability. But often, people only see the successful outcome and not the process to get to that point. An example relevant to my academic career, I had to delay taking my GRE, which involved coordinating multiple rides with people. The computer with the accessibility software was in use and there were no more slots or computers with that software at the test center, so I had to wait 2 extra weeks to take the exam, making similar arrangements again. This is just one small example of many disability hurdles that people may not know if they just see that I landed a tenure-track job. By ignoring the process, people ignore the many ableist systems in place that prevent other people with disabilities from excelling, too.
In academia, this narrative can be incredibly dangerous. Disabled scholars are inspirational when they are just trying to exist in a competitive job environment that has additional structures stacked against them. For those of us who succeed, it perpetuates this myth that the existing systems for disabled academics are fine—and that is far from the truth. Disabled academics are an underrepresented demographic on multiple levels—from graduate admissions to professors. We should not be making things this hard for disabled academics in the first place.
- Reasonable accommodations for tenure
The Americans with Disabilities Act (ADA) requires reasonable accommodations for work. For example, employers provide me with larger monitors and other equipment to help with my disability. But reasonable accommodation for essential job functions is ambiguous, and the issue becomes more complex when universities have ambiguous tenure expectations. The thorny question is how to accommodate the ever-changing standards of our early-career researchers. Our CV and research output are key to getting hired as post-docs and faculty. But given the extra time constraints on disabled academics, is there any consideration for reasonable accommodations in the tenure process?
In the United States, 26% of the population has a disability. I looked up 2019 data reported by the National Science Foundation (NSF) about the number of professors with disabilities at 4-year educational institutions. In Table 9-33, in all occupations, the percentage of tenured faculty with disabilities was 10.2%, while the percentage of tenure-track faculty (not tenured) with disabilities was 7.5%. In Table 9-34, the data are split by age. Under the age of 40, the percentage of tenure-track faculty (not tenured) with disabilities was 6.3%–and tenured faculty was 3.4%. To me, these descriptive statistics suggest that there might be a difference in disability representation in academia. We may have more disability representation of those disabled after tenure rather than those disabled earlier in life. Disabled scholars need support regardless of when they became disabled, but these data suggest that we could do better to support disabled early career scholars.
This point is controversial. So many reward mechanisms in academia are tied to productivity and time. As discussed above, many disabled academics may have a lower ceiling to how much they can work without hindering their health any further. The push to work longer, harder, and faster in academia has consequences. As we spiral into requiring more and more from early career scholars, we will reach a breaking point where only able-bodied academics can do this work. Or rather, the only disabled academics are likely those who were diagnosed with a disability after reaching tenure. This is not sustainable, and universities need to reflect whether they are truly providing an environment that supports their disabled students, post-docs, and faculty.
Conclusion
These are just some important issues as a legally blind academic. Other people with disabilities—or even other blind academics—may have different thoughts or experiences. What is clear is that academia should provide more support for scholars with disabilities. While I have learned to manage my disability over the past 25 years, it still has major consequences for my life and career. There is no cure or overcoming my disability—I am just managing things that I can day-to-day. My hope is that academia can be more supportive in helping me—and other disabled scholars like me—to manage my disability in the future.
[1] I call myself disabled, and I will use disabled academic and disabled scholar regularly in this post. I also use academic with disabilities, too. This language issue gets into a broader context about disability identity that is explained well by Anjali Forber-Pratt in this post.
