Navigating environmental academia in a disabled body: an embodied autoethnography of ableism and advocacy

Abstract

Disabled scholars are seriously underrepresented in academia and experience some of the highest rates of harassment of any protected class within the post-secondary educational system. This paper recounts my personal experience as someone living with Ehlers Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and endometriosis. Focusing on lived examples of ableism and approaches to advocacy, I highlight barriers to disabled individuals within the academic field of environmental science. I further argue that the pervasiveness of ableism within the environmental field is especially insidious, as such barriers limit the ability of ∼1/5 of the population to contribute to addressing environmental degradation. This account provides insights to administrators seeking to improve their organization’s treatment of disabled faculty and staff, to faculty and staff seeking to improve their treatment of disabled colleagues, and to disabled scholars currently navigating an ableist education system and job market.

Keywords:

• Ableism
• autoethnography
• disability representation

Increased attention is being rightfully given to diversity, equity, inclusion, and belonging (DEIB) issues in academia. Many universities and research institutions expressly state their intention to diversify their workforce, including providing space for disabled and neurodiverse scholars (Lindsay and Fuentes 2022). However, despite these intentions, recent analyses consistently demonstrate that disabled individuals are extremely underrepresented in academic spaces, even when compared to other minority populations (Brown and Leigh 2018; Lindsay and Fuentes 2022).

An estimated 16–20% of people identify as disabled, representing about one-fifth of the population. In a post-COVID 19 world, these numbers are set to rise. Yet, even generous estimates put disabled academic faculty and staff at a meager 3.9% of the total institutional workforce (Brown and Leigh 2018). This disparity is especially egregious in many STEM fields, including my own—environmental science and anthropology (Durban 2022; Peterson 2021). For those studying STEM, there is a clear loss of disabled perspectives the higher up in education one goes. Beginning with STEM undergraduates, about 10% are disabled, but that number falls to 6% for graduate students, and to only 2% for those who earn a doctoral degree (Peterson 2021). This pattern indicates barriers to disabled scholars inherent within academia and the sciences that need to be dismantled (Vasquez 2021; Peterson 2021).

But what are these barriers, and why are they especially pervasive in STEM fields? Prior research indicates that ableism takes many forms in the academic world, including inflexible field work requirements, a worldview that interprets disability as deficit (leading to some of the highest rates of harassment), and a lack of disabled mentors (Brown, Thompson, and Leigh 2018). In the following section, I will share my personal experiences of these barriers, in the hope that my account of these moments can increase awareness and empathy for the unique challenges faced by disabled scholars. We will then turn to different approaches to self-advocacy and the question of disclosure, before linking this embodied experience to the larger toll it takes on the environmental field.

Autoethnographic reflection: lived experience of ableism in academia

I once referred to myself as ‘disabled’ to a supervisor with whom I had a good, working relationship. Their response was to immediately place their hand over their chest and say that I shouldn’t ‘talk down’ about myself. It was a puzzling moment, because I knew they were trying to be empathetic and encouraging, but it also revealed an unsettling assumption on their part—that to be disabled was inherently a deficit—a bad word to be avoided.

The truth was, I was not speaking badly about myself at all. In fact, the mere act of being able to state my disability was for me a feat to be proud of. I had gone through years of pain, surgeries, and medical gaslighting before finally learning why certain things were easy for others, but nearly impossible for me. I knew in that moment, wherein I had hoped to find reasonable accommodations that would allow me to continue in a job I loved without continuing to physically harm and injure myself, that no such accommodation would be possible—or at least conceivable by those in the position to make those decisions.

Indeed, I would soon be offered a different job as such an ‘accommodation’—one that came with reduced hours, reduced pay, and most insidious (and ironic) of all—possibly no healthcare. It was not an offer I could take, and so we parted ways. It was an amicable separation, as I had already found a better-suited job elsewhere, yet it stung nonetheless, as this otherwise forward-thinking, diversity-championing institution could not (or would not) make space for my disabled body, despite the wealth of knowledge and skills they acknowledged I offered. Nor was this the first time I had experienced such a disappointment.

A few years earlier, when I had been a young graduate student dealing with mysteriously failing health on top of my full course load and research assistant duties, I’d had a similar conversation. With days on-end spent in specialist’s offices, and ever-increasing pain, brain fog, and exhaustion overtaking my body and mind, I came to my mentor and research supervisor for help. I had two simple requests: that I be given specific, hard deadlines for all deliverables, and that I be allowed to set my schedule around the needs of my body, provided those deadlines were met. At the time, the working diagnosis to explain my chronic pain and overwhelming fatigue was fibromyalgia (though this would later turn out to be incorrect). I communicated this through tears to my mentor and watched as their jaw tightened and face fell.

While they expressed their sympathy, they relayed that having previously worked with a colleague with fibromyalgia, they had ‘promised themselves they would never do so again.’ They were clear in their opinion that individuals with such conditions were objects of pity, but not individuals with whom they would consider collaborating with—especially if they needed any ‘extra’ accommodations. My mentor said that the project we were working on was simply ‘too important’ to include people with such conditions and needs, and thus, I was terminated. Due to that individual’s immediate, visceral rejection of working with a disabled student, I lost my income, benefits, and tuition coverage. Had I not been fortunate enough to have had a teaching assistantship open in the middle of that school year, I likely would have been forced to drop out, despite my 4.0 GPA and multiple awards from the school. I often wonder how many students in similar situations were not so lucky.

These two experiences exemplify the barriers I have faced as someone who I now know has a genetic disorder called hypermobile Ehlers Danlos syndrome (hEDS) comorbid with postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), autism, and endometriosis. These conditions, which often present together, cause me great pain, and require medications, supplements, various therapies, and careful diet to manage. But I heartily decry the idea that they inherently prevent me from providing meaningful contributions to my chosen field. In my experience, it has consistently been how others in my field perceive my disabled body as somehow deficient that ultimately renders such negative outcomes such as those described above.

In addition to these two examples, my graduate student career has been littered with microaggressions, from disparaging comments made about my need to sleep more than my peers during fieldwork to questioning my need to sit rather than stand to avoid syncope. Such subtle ribbing may seem harmless, but they create a culture that deems rest and self-care indulgent, rather than necessary. This harms not only disabled individuals, but all of us, as we are ultimately humans with bodily needs.

Approaches to self-advocacy: to disclose or not to disclose

Having shared my personal brushes with ableism in the academic world, I turn now to what we can do to mitigate these barriers first as individuals, then as a collective. For individuals contending with disabilities, the first major hurdle that must be crossed is the decision whether to disclose their disability to their employer and/or supervisor. This in and of itself presents a puzzling quandary, as disclosure is necessary to access accommodations and resources, but also leaves the individual vulnerable to stigmatization (Yerbury and Yerbury 2021). This risk of stigmatization is especially high for those with less visible disabilities—as they may be perceived as malingering due to a personality fault, such as ‘laziness’ (Brown and Leigh 2018). This decision is therefore an individualized cost-benefit analysis, mediated even further by self-doubt and their personal journey with their disabled identity.

When compared to disabled workers in other fields, disabled academics have been shown to have an outsized concern for being taken seriously for their contributions when compared to non-disabled colleagues (Brown and Leigh 2018). This fear may lead to more academics choosing to hide or ‘push through’ their disability, causing deficits in other areas of their life, including health and family. This ableism, both internalized and present from others in their lives, therefore, poses a real risk of burnout, representing a large loss both for individuals and the fields in which they work.

Disabled individuals may benefit from working on their personal acceptance of their disability first, to combat their own internalized ableism, such as through therapy. I personally found this strategy, alongside finding an accurate diagnosis, to be an invaluable part of my journey. But without true institutional support and a culture that actively identifies and calls out ableist assumptions and microaggressions, no amount of personal reshaping is enough. Institutions can begin to accomplish this by funding employee resource groups (ERGs) for disabled people, providing training in addressing bias and recognizing discriminatory practices toward disabled employees, and/or re-thinking certain norms (such as the need for all students to be able to complete physically demanding fieldwork).

Speaking of field work, I would like to specifically address observations I have made as a disabled academic working in the environmental sciences. As part of a student’s natural progression in the conservation field, they are expected to find various temporary placements (internships, summer jobs, field work positions etc.) as stepping-stones to gain experience. Entire online job boards exist for this purpose, but a quick search of available positions reveals that nearly every posting requires the student to be able to ‘lift 30–50 pounds,’ ‘work outside for long hours,’ ‘work in all weather conditions,’ etc. While some positions undoubtedly do require such physically inclined individuals, I refute the idea that they all do, or that accommodations could not be made. I wonder how many disabled individuals have been ‘filtered’ out of continuing in the environmental field, purely because of the constant barrage of physical requirements in nearly every internship or fieldwork opportunity.

This filtering of early career scientists is especially costly to the field of conservation, because of the environmental catastrophes currently facing our planet and species. We simply cannot afford to lose the potential contributions and perspectives of disabled individuals on environmental issues. Therefore, I encourage anyone in a position of posting available internships, seasonal positions, etc. to be thoughtful about whether they truly require someone who meets these rigid, physical criteria, or if they can be more inclusive in their hiring practices.

Conclusion

Ableism is not limited to the academy, but given our expressed commitment to inclusivity, the rampant discrimination toward disabled scholars is particularly problematic. The cost is not only felt by disabled individuals who must navigate unnecessary obstacles, but also by the fields we are working in as a whole (Compes 2021). This is especially true for applied disciplines like the environmental sciences, as we need ‘all hands on-deck’ in this current period of unprecedented environmental degradation. To combat this, we must confront ableism by re-thinking norms of ability and providing robust training that allows mentors and supervisors to recognize and alter their ableist behaviors.

Disclosure statement

No potential conflict of interest was reported by the author(s).