On disability and chronic illness in mathematics

Guest post by Allison Miller

This piece comes from my desire to have more conversations about disability, chronic physical and mental illness, and neurodivergence in mathematical spaces. This is not one story but a multitude, shaped not just by diagnoses but by race, class, gender, and more: I hope that by sharing my experience I make a little more space for others to do the same.

 

Part 1: The personal

When I talk to students about my career path, I almost always tell them about the time that I nearly left grad school. The short version goes something like this.  In my second year, a department culture that “you shouldn’t try to be a mathematician unless it’s the only profession that could make you happy” combined with my own insecurities to predictable effect: I decided that I wasn’t the right fit for graduate school. After months of soul-searching and applying for non-academic jobs, though, I eventually decided that the ways I love math were enough and that I did want to continue towards my doctoral degree.

No part of that story is false, but it is incomplete. At the time, I was also dealing with significant health problems: I had to take breaks on my short walk home, saw my diet transform into whatever food didn’t upset my stomach too much, and was falling asleep all over campus.  Perhaps surprisingly, it took me years to recognize that this mismatch between me and my surroundings might have contributed to my feelings of isolation and inadequacy. In retrospect, of course I struggled to identify with a culture in which rest had to be earned and productivity was identified with personal value!

Today, I’ve found an equilibrium that looks different from that of many people around me.  I need more rest than most, and spend more time and effort caring for my brain and body. I feel guilty about this sometimes, which I suspect stems both from my knowledge that many people who equally need this rest can’t access it, and from internalized ableist narratives equating busyness with moral worth. I work with and around my wonky auditory processing, trying mostly unsuccessfully to balance “assertive enough to be listened to” and “non-confrontational enough to preserve important professional relationships” when asking for accommodations. While I do find this challenging, as a white woman I have significant privilege here: this line is much harder to walk for many others, especially BIPOC women (see Aparna R.’s piece, linked below).

While writing this piece, I sometimes worried about being perceived as that “ cultural bogeyman…the attention-seeking, trouble-making, fraudulent scrounger” [Limburg] who asks for undeserved special treatment. After all, I have been successful according to mainstream standards: who am I to make a fuss? There are many possible negative reactions, ranging from “you’ve done well, so what do you have to complain about?” to “you haven’t done well, so maybe you’re just not that good at math”. Both ends of this spectrum serve to silence critique and preserve the status quo: if both success and failure are delegitimizing, which disabled people are worth listening to?

 

Part 2: The political

The lens of disability can offer a powerful perspective on how to make academic mathematics more equitable, just, and humane. One key framework is the social model of disability, which argues that “for many people with disabilities, the main [sic] disadvantage they experience does not stem directly from their bodies, but rather from their unwelcome reception in the world, in terms of how physical structures, institutional norms, and social attitudes exclude and/or denigrate them” [Goerig]. As a personal illustration, I often have difficulty understanding all of people’s speech, especially when I can’t see their faces. The medical model of disability would locate any disadvantage from, for example, not being able to access a podcast as coming from a flaw of my body; the social model would emphasize that the podcast producers did not include a transcript. Both the medical and social models of disability have value in certain contexts, but I believe the latter gives us as mathematicians– people who design courses, advise students, and shape research environments– more to work with.

Writer and advocate Rebekah Taussig defines ableism as in part “the process of favoring, fetishizing, and building the world around a mostly imagined, idealized body.”  This process of “building the world” takes place in mathematics classrooms, research groups, and institutions as much as anywhere else. For example, see the decision to hold the 2022 JMM exclusively in person, during an ongoing pandemic that continues to have brutally disparate impacts (and despite nearly eighteen months of proof that virtual meetings can succeed while broadening access across many dimensions!). Even limiting myself to personally relevant examples, I could list off accessibility failures in our community ad infinitum: the assumption that all conference participants will enjoy a nice vigorous hike at high altitudes; the lack of even automated closed captioning at the majority of virtual talks; conversations on mental health in math that don’t acknowledge the existence of mental illness except as coming from the pressures and stresses of academia (see Mental Health in the Mathematics Community, linked below, for a notable exception).

However, such a list would be inevitably incomplete, and might also give the impression that there is such a thing as a perfectly accessible space. One conference attendee’s bright-enough-to-read-by is another’s migraine trigger; one student experiences a highly flexible course as invaluable in letting them work around pain flare-ups, while another finds it overwhelms their available executive function. Thirty years after the passage of the ADA, the legal requirement to provide reasonable accommodation for documented disabilities is both frequently unfulfilled and simply not enough. We must move beyond doing the bare minimum and towards a philosophy of “how can we best meet the needs of everyone who is– or should be– in the room?”

We need to acknowledge the fact that ableism in mathematical spaces is unsurprising given the broader societal context, then pay attention to the ways in which our subculture’s norms and structures shape this ambient cultural noise. As a part of this, we can recognize that academic mathematics can offer accessibility advantages. Flexibility in when, where, and how work happens can be invaluable to the professional success of someone with a chronic illness.  While we may take such flexibility for granted in research math, in many other careers one would struggle to receive this even as a formal accommodation. But there are also deeply embedded structural aspects of academia (and mathematics in particular) that disadvantage disabled people. For example, the early career expectation to move every few years from grad school to postdoc and onwards disproportionately harms those who rely upon stable support networks and ongoing relationships with healthcare providers.

Success in mathematics should not depend on whether someone’s needs happen to mesh sufficiently well with institutional structures and spaces that have been designed to serve only certain kinds of minds and bodies. Moreover, it is not enough to take a piecemeal approach of making individual accommodations within the current system. We need an understanding that math happens not in disembodied brains but in and between people with particular strengths, needs, and limitations, and this must be accompanied by a commitment to honor needs and respect limitations as much as we celebrate and even fetishize strengths. (That said, there are excellent checklists for websites, meetings, events, and course materials that, while not systemic change, can make an immediate difference in making mathematical spaces more accessible– I encourage you to take a look.)

Many of the questions at the heart of disability justice, from ‘Whose needs are normalized and whose pathologized?’ to ‘Who is treated as an authority on their own experience?’, are deeply entwined with race, class, and gender. As a cis white woman without visible disabilities, I have been protected by privilege as well as harmed by discrimination: real progress will require hearing many voices and focusing on the most marginalized. I would be grateful to any readers who would like to take this space to talk about their own experiences, even and especially as they differ profoundly from mine. That said, if you don’t want to or feel safe in sharing, please know that you don’t owe disclosure to anyone. Even coming from a place of relative privilege and security, I have chosen to omit many details from this piece. Whether, when, and how to share intensely personal information is a set of questions without right answers, just trade-offs that each of us deserves to navigate in our own way.

 

Part 3: Acknowledgements and references

*Thanks to Miriam Kuzbary for much needed encouragement throughout the months-long process of writing this, to Siddhi Krishna for very thoughtful comments on every version of this piece, and to the editors of inclusion/exclusion for their helpful suggestions.

*Am I disabled?, by Joanne Limburg, for eloquently articulating the implications of answering this sometimes challenging question.

*Rethinking disability: the social model of disability and chronic disease, by Sara Goering, for the above quote about the social model of disability.

*Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Taussig, for the definition of ableism excerpted above and more.

*Mental Health in the Mathematics Community, by Mikael Vejdemo-Johansson, Justin Curry, and Julie Corrigan, from the August 2019 AMS Notices.

*The Disability Visibility Project led by Alice Wong, a large collection of “original essays, reports, and blog posts about ableism, intersectionality, culture, media, and politics from the perspective of disabled people.” The pieces “The burden and consequences of self-advocacy for disabled BIPOC” by Aparna R.; “Academic Ableism: Fighting for Accommodations and Access in Higher Education” by Krys Méndez; and podcast Episode 64: Disabled Teachers with Travis Chi Wing Lau and Dayniah Manderson are especially relevant.

*Indigenous Mathematicians, Lathisms, Mathematically Gifted & Black, and Spectra, for inspiring me to think more about the importance of individual and collective stories in mathematics.

This entry was posted in ableism, equity, graduate school, intersectionality, mental health, universal design, victim-blaming. Bookmark the permalink.

1 Response to On disability and chronic illness in mathematics

  1. Avatar Matilde Marcolli says:

    Ableism in the mathematical community is absolutely extreme, even by the standards of the very ableist society we live in. I think there are historical reasons for why the way our community perceives the activity of doing mathematics has this consequence. They are partly discussed in this post, and should certainly be analyzed more in depth. Having developed a physical disability in recent years, I have a clear perception of what devastating impact the same condition would have had just a few years earlier, when my academic career was still under construction. Now I can happily afford to distance myself from the rest of the community and continue to do my work, but early career researchers don’t have that luxury. Even the “piecemeal approach of making individual accommodations” is a complete failure: if you ever need a disability accommodation in a math department, go straight to the ADA office of your university and ask them to enforce the law, don’t waste any time trying to talk to your department chair. And this is just mentioning physical disability: the situation I have witnessed over the years for non-neurotypical people seems to be even worse. Thanks for bringing this topic to people’s attention: I am looking forward to seeing more discussion.

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