{"id":2595,"date":"2021-08-23T17:31:00","date_gmt":"2021-08-23T21:31:00","guid":{"rendered":"https:\/\/blogs.ams.org\/inclusionexclusion\/?p=2595"},"modified":"2021-08-23T17:36:01","modified_gmt":"2021-08-23T21:36:01","slug":"on-disability-and-chronic-illness-in-mathematics","status":"publish","type":"post","link":"https:\/\/blogs.ams.org\/inclusionexclusion\/2021\/08\/23\/on-disability-and-chronic-illness-in-mathematics\/","title":{"rendered":"On disability and chronic illness in mathematics"},"content":{"rendered":"

Guest post by Allison Miller<\/a><\/p>\n

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.<\/p>\n

 <\/p>\n

Part 1: The personal<\/strong><\/p>\n

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.\u00a0 In my second year, a department culture that \u201cyou shouldn\u2019t try to be a mathematician unless it\u2019s the only profession that could make you happy\u201d combined with my own insecurities to predictable effect: I decided that I wasn\u2019t 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.<\/p>\n

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\u2019t upset my stomach too much, and was falling asleep all over campus.\u00a0 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!<\/p>\n

Today, I\u2019ve found an equilibrium that looks different from that of many people around me.\u00a0 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\u2019t 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 \u201cassertive enough to be listened to\u201d and \u201cnon-confrontational enough to preserve important professional relationships\u201d 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.\u2019s piece, linked below<\/a>).<\/p>\n

While writing this piece, I sometimes worried about being perceived as that \u201c cultural bogeyman\u2026the attention-seeking, trouble-making, fraudulent scrounger\u201d [Limburg<\/a>] 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 \u201cyou\u2019ve done well, so what do you have to complain about?\u201d to \u201cyou haven\u2019t done well, so maybe you\u2019re just not that good at math\u201d. 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?<\/p>\n

 <\/p>\n

Part 2: The political<\/strong><\/p>\n

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 \u201cfor many people with disabilities, the main <\/i>[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\u201d [Goerig<\/a>]. As a personal illustration, I often have difficulty understanding all of people\u2019s speech, especially when I can\u2019t 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.<\/p>\n

Writer and advocate Rebekah Taussig<\/a> defines ableism as in part \u201cthe process of favoring, fetishizing, and building the world around a mostly imagined, idealized body.\u201d\u00a0 This process of \u201cbuilding the world\u201d 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\u2019t acknowledge the existence of mental illness except as coming from the pressures and stresses of academia (see Mental Health in the Mathematics Community<\/a>, linked below, for a notable exception).<\/p>\n

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\u2019s bright-enough-to-read-by is another\u2019s 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 \u201chow can we best meet the needs of everyone who is– or should be– in the room?\u201d<\/p>\n

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\u2019s 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.\u00a0 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.<\/p>\n

Success in mathematics should not depend on whether someone\u2019s 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.)<\/p>\n

Many of the questions at the heart of disability justice, from \u2018Whose needs are normalized and whose pathologized?\u2019 to \u2018Who is treated as an authority on their own experience?\u2019, 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\u2019t want to or feel safe in sharing, please know that you don\u2019t 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.<\/p>\n

 <\/p>\n

Part 3: Acknowledgements and references<\/strong><\/p>\n

*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.<\/p>\n

*Am I disabled?<\/a>, by Joanne Limburg, for eloquently articulating the implications of answering this sometimes challenging question.<\/p>\n

*Rethinking disability: the social model of disability and chronic disease<\/a>, by Sara Goering, for the above quote about the social model of disability.<\/p>\n

*Sitting Pretty: The View from My Ordinary Resilient Disabled Body<\/i> by Rebekah Taussig<\/a>, for the definition of ableism excerpted above and more.<\/p>\n

*Mental Health in the Mathematics Community, by Mikael Vejdemo-Johansson, Justin Curry, and Julie Corrigan, from the August 2019 AMS Notices<\/a>.<\/p>\n

*The Disability Visibility Project<\/a> led by Alice Wong, a large collection of \u201coriginal essays, reports, and blog posts about ableism, intersectionality, culture, media, and politics from the perspective of disabled people.\u201d The pieces \u201cThe burden and consequences of self-advocacy for disabled BIPOC\u201d<\/a> by Aparna R.; \u201cAcademic Ableism: Fighting for Accommodations and Access in Higher Education<\/a>\u201d by Krys M\u00e9ndez; and podcast Episode 64: Disabled Teachers <\/a>with Travis Chi Wing Lau and Dayniah Manderson are especially relevant.<\/p>\n

*Indigenous Mathematicians<\/a>, Lathisms<\/a>, Mathematically Gifted & Black<\/a>, and Spectra<\/a>, for inspiring me to think more about the importance of individual and collective stories in mathematics.<\/p>\n

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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 … Continue reading →<\/span><\/a><\/p>\n

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