Dialogues on Disability: Shelley Tremain Interviews Emily Heydon

Hello, I’m Shelley Tremain and I’d like to welcome you to the seventy-ninth installment of Dialogues on Disability, the series of interviews that I am conducting with disabled philosophers and post to BIOPOLITICAL PHILOSOPHY on the third Wednesday of each month. The series is designed to provide a public venue for discussion with disabled philosophers about a range of topics, including their philosophical work on disability; the place of philosophy of disability vis-à-vis the discipline and profession; their experiences of institutional discrimination and exclusion, as well as personal and structural gaslighting in philosophy in particular and in academia more generally; resistance to ableism, racism, sexism, and other apparatuses of power; accessibility; and anti-oppressive pedagogy.

The land on which I sit to conduct these interviews is the traditional territory of the Haudenosaunee and Anishnaabeg, covered by the Upper Canada Treaties and directly adjacent to Haldiman Treaty territory. I offer these interviews with respect and in solidarity with Indigenous peoples of Turtle Island and colonized people in other settler states.

My guest today is Emily Heydon. Emily is a second-year Ph.D. student in the Department of Logic and Philosophy of Science (LPS) at the University of California, Irvine (UCI), where she studies philosophy of biology and evolutionary game theory. In her spare time, Emily runs, hikes, figure skates, and blogs about her experiences as a disabled, formerly homeschooled, graduate student.  

Welcome to Dialogues on Disability, Emily! You began your university education in environmental science and evolutionary biology; then, you transitioned to a philosophy department. Please explain your decision to transfer to philosophy and how this move has shaped your current studies.

Thank you so much for having me, Shelley! I completed my undergraduate studies at Notre Dame, where I started off as an environmental science major. The environmental science program at Notre Dame is quite small and considered a subset of the much larger biology department. So, as an environmental science student, I had the opportunity to take a wide variety of biology courses, particularly in evolutionary biology and ecology. At the time, I assumed that I would eventually go to graduate school for field biology research; that was a dream I’d carried with me since childhood. However, in field biology and ecology, most data collection occurs outdoors in the summer months; and because I have chronic tension headaches that are exacerbated by the heat, I eventually came to the unfortunate conclusion that a career as a field biologist wouldn’t be conducive to my health. And so, in my third and fourth years of undergrad, I began actively searching for an alternative career path.

I had been taking several philosophy courses to fulfill my elective credits because I enjoyed the subject matter; not because I saw a future for myself in philosophy. Things changed when I entered my fourth year. That year, I took a philosophy of science seminar and so began reading literature in philosophy of biology for the first time. Around the same time, I began conducting environmental justice research under a faculty member in the philosophy department who used philosophy of science methods to analyze environmental issues. I found that I greatly preferred philosophical research to scientific research. So, I decided that I wanted to apply to graduate school in philosophy of science.

There was just one problem: I was about to graduate with a science degree and hadn’t completed the requisite majors-level philosophical coursework to make my graduate-school applications competitive. So, I decided that I wanted to double-major in philosophy and environmental sciences; this would allow me to stay at Notre Dame for a fifth year, so that I could apply to graduate school while completing an additional degree program in philosophy. As it turned out, the dean’s office was not too happy about me trying to add a second major so close to my graduation. I was told that I wouldn’t be awarded two degrees. In the end, I transferred my coursework into the philosophy department, forfeited the science degree that I had already earned, and graduated with B.A. in philosophy in May 2020.

Looking back, I’m glad that I decided to make the transition to philosophy when I did. Taking a fifth year of classes in the philosophy department led to two positive outcomes. One of these positive outcomes is that I gained admission to several philosophy of science graduate programs, including UC Irvine LPS, where I currently study. The other benefit is that I had the opportunity to develop my first research project in philosophy of biology. I’m almost finished with that project and hope to publish it soon; in the paper derived from the project, I use a couple of game-theoretic models to analyze how spiteful behaviors may inhibit the evolution of altruistic behaviors. I think that my prior background in biology helped make my transition to technical philosophy of biology work relatively smooth.

[Description of photo below: Emily sits on the concrete steps of the entrance to the main building at Notre Dame in June 2020, after graduation, wearing university regalia and with hands crossed on a bended knee. These steps are the subject of a tradition, or superstition, according to which no one is permitted to climb this staircase before they graduate; if they do so, according to this tradition/superstition, they will not graduate at all. This tradition/superstition has rendered the staircase a common site for graduation photos to be taken.]

You were homeschooled before attending university, Emily. How did homeschooling shape your education, your aspirations, and your research interests?

I was homeschooled up until the age of eighteen; so, when I left home to attend university, it was the first time that I was enrolled in any sort of traditional school. From the time that I was about middle-school-aged, I knew that I wanted to earn a biology degree and eventually become a researcher. I think my interest in biology was partly due to the fact that I loved animals—as a child, I had rabbits and chickens as pets—and partly a product of the specific educational resources to which I had access.

During my teenage years, most of my schooling came from books; I generally didn’t have access to teachers or mentors who could assist me with the material. Thankfully, I always had access to very good math textbooks—many homeschooled students don’t—and so I was able to learn trigonometry and calculus at home by reading and working out problems on my own. I think that my interest in, and comfort with, mathematical modeling is largely due to the fact that I was able to study some of those advanced mathematics concepts as a teenager. Similarly, it was relatively easy for me to study biology at home. I spent my teenage years in Hawaii, because my father was in the military and was stationed at Pearl Harbor. Because the weather was nice year-round, I spent a lot of time outdoors, drawing the local birds and dissecting specimens in my backyard. I also volunteered as a docent in the primate department at the Honolulu Zoo.

So, I had a lot of hands-on learning in the biological sciences, which was comparable to, or better than, the high-school biology education that I would’ve received in a public or private school. On the other hand, learning some subjects, such as chemistry and physics, was more difficult because I didn’t have access to a lot of the laboratory materials necessary to conduct those sorts of experiments. Furthermore, my at-home biology education was necessarily focused on environmental biology and ecology, as opposed to molecular biology, because experiments in the latter area were simply not possible without access to a laboratory.

One difficulty with being homeschooled was that I generally lacked women role models, particularly in the sciences. Within homeschooling culture, there’s a strong focus on reading and writing, less of a focus on science and mathematics. So, it’s common for homeschooled students to have above-average reading and writing skills and below-average skills in mathematics and the sciences. As a result, many formerly homeschooled students go on to attend small liberal arts colleges, or to pursue careers that don’t involve science or math. In other words, the fact that I spent so much time studying math and biology, as well as the fact that I wanted to attend university to study biology, made me a bit of an anomaly amongst my homeschooled peers. Thankfully, one of my mother’s friends was a field biologist and I was able to ask her questions about that career path.

Still, I experienced quite a bit of sexism in the homeschooling community, where my desire to pursue a career in a STEM-related field led to a lot of tension and conflict. My parents are traditional Catholics. Growing up, most of my friends were homeschooled in either traditional Catholic or conservative evangelical homes. Within the conservative religious homeschooling community of which my family was a part, girls are expected to do a lot of childcare and housework; they are generally dissuaded from pursuing careers outside the home. Among the members of that community, there is a general belief that homeschooling is the best way to ensure that children receive a Christian education, that mothers should be responsible for homeschooling their own children, and that it is not possible for a woman to pursue a career outside the home while also fulfilling her duties as a housewife and homeschooling mother.

So, the expectation was that I would one day marry a god-fearing man in the church and subsequently remain at home to homeschool my own children. It was generally frowned upon for a woman to earn a Ph.D. or pursue a career in academia. Many of my female childhood friends weren’t allowed to attend college. Although my mother encouraged me to attend university, she specifically did so because she wanted me to be able to support myself until I found a husband, or in the rare case that my future husband died before me. The fact that I spent so much time studying and playing sports, rather than helping with the housework or looking after my younger siblings, definitely led to a lot of tension between my parents and me. And I experienced a lot of internal conflict because, although I knew that I wanted to pursue a particular career path, the message I received—both from my family and from my community—was that doing so would be immoral. Even after I left home, it took me several years to shake the feeling that I was a sinner or that there was something fundamentally wrong with me because I wanted an education and a lifestyle that I’d been told I wasn’t allowed to have.

Emily, you have indicated to me that homeschooling is also, for you, intertwined with disability. Please explain this observation.

I was diagnosed with post-traumatic stress disorder (PTSD) and panic disorder in 2018, after experiencing symptoms for several years. Many other folks who were raised in the conservative religious homeschooling community—some of them my childhood friends—have likewise received trauma-related diagnoses in adulthood. In some cases, these formerly homeschooled individuals are unable to work full-time due to their disability status. So, they struggle to separate from their parents. One might ask, why does the conservative homeschooling community produce so many heavily traumatized graduates? I think that there are two main reasons why it does so.

The first reason that comes to mind is that, within the conservative religious homeschooling community, there’s a strong emphasis on authoritarian parenting styles, with a belief that strict parenting is required to protect children from un-Christian values and secular influences. For example, when I was an adolescent, I was generally not allowed to use the Internet without permission, nor was I allowed to read or view age-appropriate books or movies that my parents didn’t approve of. Even most of my textbooks were produced by Christian publishers, who censored topics like evolution and climate change. Clothing was likewise heavily vetted: I was discouraged from wearing normal swimsuits and some of my friends were forced to wear long skirts by their parents.

The downside to this type of parenting is that any small deviation from the parents’ rigid expectations is interpreted as rebellion and punished accordingly. For example, when I was a teenager, I took up figure skating and began spending several hours a week at an ice rink that was a five-minute drive from the house. Rather than encourage my pursuit of the hobby, my parents became upset by the fact that I was spending so much time away from the family and wearing costumes that they considered immodest. Sometimes, they would refuse to drive me to skating practice and they wouldn’t pay for most of the training fees. So, I had to get a job.

Because the religious homeschooling community emphasizes traditional gender roles, there are consequences for girls who refuse to conform to gendered expectations. In my case, I refused to forfeit study time in order to perform unpaid childcare duties. Because I wouldn’t allow myself to be exploited in this way, I was regarded as selfish. Tensions escalated inside my family’s home. I eventually developed anorexia and OCD from the stress. My parents interpreted the eating disorder as an affront to their authority, and so, I was punished for symptoms that I couldn’t control. Sometimes, my mother would physically and verbally threaten me; sometimes, she would refuse to speak to me at all. I was taken to some military doctors who didn’t know how to help me, but rather caused me a lot of lasting medical trauma. It was a bad situation; and there’s a lot more that I could say about it. At the time, I chose to focus what little energy I had on my studies, because I knew that getting into university would allow me to leave that situation behind. Thankfully, I managed to score well on my entrance exams despite the chaos. So, I left home to attend Notre Dame in 2015, when I was eighteen.

Why are conservative religious homeschooling and trauma-induced disabilities interconnected? Isolation. In other words, I think the second reason is that, in many cases, homeschooling enables children to become relatively isolated from society which allows bad situations to develop inside the home from which it is difficult for children to leave. Now obviously, not all homeschooling parents are abusive and individual experiences with homeschooling differ rather widely. But given my personal experience as someone who grew up within the conservative religious homeschooling movement and my observations of the ways that many of my homeschooled childhood friends were treated by their parents, I’d say that child abuse within the religious homeschooling community is a far more widespread problem than most people on the outside believe it is.

I think that, growing up, it was difficult for me to recognize that my family was dysfunctional, simply because so many of my friends’ families were similarly dysfunctional; furthermore, this dysfunction was largely normalized. As a child, I generally didn’t have access to school counselors or therapists or anyone else to whom I could go for advice or with whom I could talk about what life was like inside my family’s home. My parents definitely discouraged me from talking about family problems with other people, saying that doing so would be “gossip,” which was immoral. At the time, I didn’t know what Child Protective Services was or even that there was a phone number that I could call for help. When I was a teenager, my parents confiscated my phone for several months, so that I couldn’t contact anyone on the outside. I generally blamed myself for my family’s problems: I thought that it was my fault that I couldn’t be the perfect Christian daughter that the religious homeschooling community told me that I was supposed to be.

A lot of people might ask, how can we prevent these sorts of abuses within the homeschooling community? I think that the only way is through better oversight. In the U.S., homeschooling laws differ by state, but most state laws about homeschooling aren’t very strict. In most cases, homeschooling parents are allowed to choose their children’s textbooks, decide which subjects their children will study, and proctor their children’s standardized tests. Moreover, the children generally aren’t required to ever meet with a certified teacher, or a school counselor, or a psychologist. This leaves plenty of opportunities for abused and neglected children to fall through the cracks.

Although I received a good education in mathematics, the liberal arts, and the sciences, this isn’t necessarily the norm. Growing up, many of my homeschooled friends didn’t study science, and many of them were years behind their public-school peers in mathematics. No one was checking up on these children to ensure that they were receiving an adequate education. In many ways, I was one of the lucky ones. Although I experienced a lot of emotional and verbal abuse as a teenager, I still managed to receive a decent high-school education, and so was able to attend university and abandon the religious homeschooling community for a better life. Some of my childhood friends weren’t so lucky; they were unable to attend college or unable to attend a good college; so, their only “option” was to marry someone within the religious homeschooling community and raise their own children in that community.

Emily, you are quite active on Twitter, especially with respect to disability and your identity. What motivates you to engage in the ways that you do?

For the longest time, I was afraid to say anything publicly about my disabilities. While I was still an undergraduate, some of my professors and advisors—who were genuinely trying to look out for my own good—warned me that, if I disclosed my disability status to other people in academia, I could experience discrimination which might negatively impact my career. Particularly, there was a concern that people might think my psych disabilities made me mentally unfit for logical, analytical philosophical work. Additionally, I think that there are a lot of misconceptions and misunderstandings around PTSD as a diagnosis; for example, the Internet abounds with popular articles about how PTSD leads to anger issues, or violent behavior, even though these claims aren’t true and don’t apply to the vast majority of people with PTSD. I was worried that if I were honest about my disabilities and spoke out about issues facing disabled people like myself, some of those negative stereotypes would be applied to me.

For a couple of reasons, my perspective on these issues changed after I started graduate school. I discovered that there were a lot of other Ph.D. students—both in my program and in similar programs—with invisible disabilities, many of them disabled similarly to me. In addition, I quickly became aware of a wide array of department-level and university-wide issues, both academic and financial, that disproportionately affect disabled students.

For example, while the vast majority of graduate students at UCI are rent-burdened to some extent, many disabled students—me included—face even higher-than-usual rent costs because their specific medical conditions require them to live in single units. Some of us also struggle to cover the cost of groceries because we’re required to follow restricted diets that are more expensive than the standard American diet. Although all Ph.D. students here have access to a university-sponsored health insurance plan, I’ve found that this plan doesn’t cover the costs of seeing certain specialists, or of running certain laboratory tests. Some of the students who have left my program in recent years have done so at least partially because they have invisible disabilities for which they received inadequate support and accommodation. After witnessing the many ways in which the system fails disabled students, I came to the realization that nothing will fundamentally change, unless people start talking about it.

Several other students in my department feel the same way and, over the past few months, we’ve begun organizing in order to initiate the changes that we think are necessary. A few of us have formed a student-led department climate committee, one of the goals of which is to develop better resources for disabled students. I discuss my own disabilities quite a bit on social media because I think it’s important for people to know the extent to which academia is designed to exclude disabled scholars and for other disabled students to know that they’re not the only ones struggling against an unfair system.

I’ve inevitably received a bit of pushback for that. There are some folks in the upper echelons of academic philosophy who think that it’s inappropriate for graduate students to express themselves so candidly on social media. And not everyone approves of the fact that I chose a holistic treatment program for my PTSD rather than to take certain commonly prescribed medications. So sometimes I receive messages that aren’t too nice. I try not to let it discourage me or prevent me from speaking out because, as I mentioned before, I think that it’s not possible to combat ableism in academia without discussing these topics, some of which have been historically regarded as taboo.

What do you think are the central, and even most, urgent issues that university faculty and administrators need to address with respect to disabled students?

I think that a common misconception, prevalent among university faculty and administrators, is that university-approved disability accommodations are relatively easy to apply for and receive. In reality, this state of affairs is very seldom the case. University-approved accommodations are generally inaccessible without a formal diagnosis. For many students, especially those from underprivileged backgrounds, the financial cost of obtaining a formal diagnosis is simply too high. Of course, certain aspects of a student’s disability can likewise make obtaining a formal diagnosis difficult. When I was an undergraduate, for example, I spent several years avoiding doctors and therapists: because I had so much prior medical trauma, I couldn’t step into a doctor’s office or a waiting room without having an anxiety attack. It took me many years to find a therapist’s office where I felt comfortable and, even then, the specific therapist I was seeing didn’t take my insurance. So, by the time I received a formal PTSD diagnosis, I had been showing symptoms for about four years. In the meantime, I was unable to access academic accommodations and my grades were thus negatively affected. I think that there are many other disabled students who find themselves in similar situations.

I think that another common misconception, among faculty in particular, is that academic accommodations give certain disabled students an unfair advantage over their able-bodied peers. And I think that university Disability Services Offices are partly to blame for this issue. On-campus Disability Services Offices tend to take a “one-size-fits-all” approach to accommodations, with “extra time” the most common accommodation instituted for a wide range of disabilities. Rather than take the time to evaluate each student’s specific needs—Do they need the ability to take short breaks? Access to medication? A private testing room to reduce distractions?—Disability Services Offices simply give disabled students additional time in which to take their quizzes and exams.

For many disabled students, these accommodations work, by enabling them to take short breaks to take medication, or address distractions in their environment, or meditate to reduce anxiety symptoms. In my experience, however, faculty don’t always understand the purpose of the extra time, and sometimes think that disabled students are given additional time in which to physically write their answers to exam questions. From this misunderstanding springs the erroneous idea that students asking for disability accommodations are trying to cheat.

When I was applying to graduate school, I took the GRE twice. The first time, I didn’t have any accommodations. The second time, I did—they gave me a bit of extra time. The second time I took the test, I scored only six points higher than I did the first time. I am sure that I scored higher the second time because I wasn’t having an anxiety attack for the entirety of the exam. I sometimes tell this story because I think that it helps to dispel the notion that students with disability accommodations are using extra time in order to unfairly outscore their able-bodied peers, or to score far higher than they would without those accommodations. In this case, disability accommodations just gave me a bit of extra time in which to breathe, so that my anxiety wouldn’t interfere with my ability to focus.  

In summary, I think faculty and administrators, as well as nondisabled students, need to understand that university-approved disability accommodations are generally hard to come by and that only disabled students who have sufficient documentation are able to receive them. In short, students who receive accommodations genuinely need them and many students who need accommodations can’t get them. Rather than gatekeeping disability accommodations, faculty and administrators need to shift to a different mindset, one in which they’re focused on helping disabled students who fall through the cracks.

I’ve witnessed situations in which faculty take initiative in this area; for example, they may offer additional time on exams to all students enrolled in a particular course, regardless of “official” disability status. At the administrative level, I think that universities must recognize that many of the bureaucratic processes that they’ve created are difficult, if not impossible, for certain disabled students to navigate. In addition, universities should take concrete steps to alleviate the financial and temporal limitations that prevent some students from receiving the accommodations that they need. For example, universities could offer stipends to cover the costs of obtaining formal diagnoses and official paperwork.

Emily, what would you like to say in closing this interview? Is there anything that we’ve discussed that you would like to expand upon? Would you like to recommend some resources of any kind about something that you’ve discussed in this interview?

In closing, I’d like to say the following: If anyone reading this interview is in a situation similar to the one that I was in two years ago—that is, finishing an undergraduate degree and hoping to attend graduate school in philosophy, but worried that others will think that they aren’t capable of earning a Ph.D. due to their disability status—I want you to know that there is absolutely a place for you here. I’m not going to lie to you and say that it’s easy. Speaking from my own experiences, however, I’ve found that the majority of people are supportive and that there are many other graduate students in my research area with disabilities similar to mine.

Emily, thank you so much for your terrific interview and in particular for offering your observations and insights on the character of homeschooling in the US. I’m sure that many readers and listeners of this interview concurred with your assessments.

Readers/listeners are invited to use the Comments section below to respond to Emily Heydon’s remarks, ask questions, and so on. Comments will be moderated. As always, although signed comments are preferred, anonymous comments may be permitted.

You can support the continuation of the Dialogues on Disability series by becoming a Patreon supporter of the series here. The entire Dialogues on Disability series is archived on BIOPOLITICAL PHILOSOPHY here.

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Please join me here again on Wednesday, November 17th for the eightieth installment of the Dialogues on Disability series and, indeed, on every third Wednesday of the months ahead. I have a fabulous line-up of interviews planned. If you would like to nominate someone to be interviewed (self-nominations are welcomed), please feel free to write me at s.tremain@yahoo.ca. I prioritize diversity with respect to disability, class, race, gender, institutional status, nationality, culture, age, and sexuality in my selection of interviewees and my scheduling of interviews.

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