Tag Archives: ableism

Why Feminist Disability Studies?

Every so often, I remember that even though I’ve left academia for good, there was one part of feminist and disability studies that made me feel less alone, and still does: feminist disability studies.

Although a solid anthology (which I reviewed for Global Comment) on the discipline was published in 2011, feminist disability studies and theory are still on the margins of feminist academia in some places; at least, it was when I was pursuing my M.A. and dealt with higher-ups who couldn’t reconcile the personal and the political (or “real life” and “scholarly praxis”) being so intricately interwoven for people like me. Before I start to sound like one of those “back in my day” grumps (I’m still in my twenties, after all), it’s probably a good idea to give a general overview of why feminist disability studies is necessary, and how it formed.

In doing so, I hope to also make the case as to why a specifically feminist focus on disability–in both academia and activism–is not just “splitting the movement apart” or “making the movement weaker” like some critics of the very idea of intersectionality say happens whenever a person who’s not white, abled, middle-class or higher, straight, or cis points out the issues within feminism. Because despite the best efforts of disabled feminists on the web, in the academy, and in activist groups, disability is still not on the feminist radar by and large.

Although Women’s Studies within the academy has opened up new understandings of gender, sexuality and their interactions with various systems of oppression, it has, like its activist counterpart, been critiqued—and rightly so–for leaving certain people out.

Scholar Chandra Mohanty contends that some Women & Gender Studies programs in the U.S. academy have implicitly supported “a kind of careerist academic feminism whereby the boundaries of the academy stand in for the entire world and feminism becomes a way to advance academic careers rather than a call for fundamental and collective social and economic transformation.” Unsurprisingly, something similar has happened in social justice circles, and online social justice continues to experience  controversies over careerism, representation, and who gets to speak on behalf of “the community.”

In another essay from her 2007 collection Feminism Without Borders, Mohanty argues that some Western feminist groups and texts “[have been] critiqued for their homogenizing, even colonialist, gestures; they have been critiqued, in fact, by those most directly affected by the exclusions that have made possible certain radical and cultural feminist generalizations.” Though Mohanty also notes that such critiques sometimes “have the risk of falling into culturalist arguments,” her point still stands, particularly for feminists and women who have been mostly left out of the movement because they do not fit what has been constructed as the mainstream “feminist” subject position: that of the white, middle-class, heterosexual, able-bodied, “liberated” feminist from the global north. Similar to some of the characteristics of the “normative” Western feminist described above, abledness has been and overwhelmingly continues to be an unspoken norm in both the academy and activist circles; reliance on these unexamined norms continues to take place in feminist spaces as well.

These “social patterns of bias and exclusion,” as Rosemarie Garland-Thomson call them, are “based on ability norms that operate similarly to gender and racial systems.” While such seemingly disparate groups as feminists of color, disabled feminists, trans feminists, and queer feminists may have different issues, they have something significant in common: they’ve all traditionally been excluded from mainstream feminism. Members of these groups, in various venues, have also raised important questions that interrogate who is excluded, why, and what steps can be taken to break that cycle.

However, those with the most privilege have traditionally called the shots as to where the energies, focus and concern are directed within feminist activism and scholarship, and middle-class, heterosexual, able-bodied, white feminists with access to media power have tended to not want to share the spotlight. Like many other groups that don’t quite fit more privileged feminists’ ideas of what “real” feminists are or what a “feminist” issue is, widespread attention paid to feminists with disabilities, and thought given to disability in feminist scholarship, seem noticeably absent within the feminist academy.

Feminist disability theory has been going on, however covertly and perhaps unnoticed by the mainstream, within Women’s Studies and Cultural Studies for many years. Central texts, at least in the U.S., have included Susan Sontag’s Illness as Metaphor (1978), Elaine Scarry’s The Body in Pain (1985), Rosemarie Garland-Thomson’s full-length cultural studies work Extraordinary Bodies (1997), and anthologies such as Gendering Disability (2004), edited by Bonnie G. Smith and Beth Hutchison, as well as the work of scholar-activists such as Barbara Hillyer, Cheryl Marie Wade, and Simi Linton.

Feminist philosophers such as Anita Silvers and Susan Wendell have done invaluable work on invisible disability, chronic illness, and the Western myth of bodily control; additionally, many queer theorists and activists, including Eli Clare, Robert McRuer and Abby Wilkerson, have taken up the disability studies cause under trans, queer and feminist activist and scholarly banners, thus showing that transgender theory, queer disability theory and feminist disability theory are, in fact, related–and are all important to cultural and area studies.

Garland-Thomson offered some useful working guidelines for feminist disability studies and theory in a 2005 article first published in Signs:

 Feminist disability studies…questions our assumptions that disability is a flaw, lack, or excess…it defines disability broadly from a social rather than a medical perspective. Disability, it argues, is a cultural interpretation of human variation rather than an inherent inferiority, a pathology to cure, or an undesirable trait to eliminate. In other words, it finds disability’s significance in interactions between bodies and their social and material environments.

In a 1988 article, feminist philosopher Susan Wendell contended that feminist disability studies cannot be totally, abstractly theoretical: “To build a feminist theory of disability that takes adequate account of our differences, we will need to know how experiences of disability and the social oppression of the disabled interact with sexism, racism and class oppression” (“Toward a Feminist Theory of Disability”).

Feminist disability theory and studies not only offer new possibilities for feminist theory as a whole, but powerfully illuminate issues that have traditionally been important to feminist theory in new and exciting ways, including include abortion and prenatal testing, assisted suicide and the right to die (or live), pace-of-life issues, media culture, cultural messages about the body, the experience of chronic illness and pain, the social construction of “normative” versus non-normative bodies, the medical establishment, labor, and sexuality. However, many feminist theorists and activists currently do not consider these issues from a feminist disability viewpoint at all–much less consider how these issues affect or might affect those living with disabilities and/or chronic health conditions.

Even as it continues to make inroads, feminist disability theory will need to acknowledge and bridge perceived “gaps” between theory and “real life” if it is to remain on the cutting edge; such a continued process could perhaps be modeled on Bonnie Zimmerman’s contention that successful theory should “[root] the production of knowledge in real social relations and commitment to social change.” While the many linguistic accessibility issues with disability theory, feminist theory, and feminist disability theory are beyond the scope of this piece, it’s been a common (and correct) criticism of academic theory that it is written and designed to be understood by an ever-shrinking number of people who have the “right” college or advanced training in the Humanities, social sciences, and/or area studies. This, unfortunately, leaves out people who could also benefit from using theory to understand sociopolitical issues in their own lives–but who might not have the “correct” (or any) credentials.

Although the theoretical is important, in matters of disability and ability, it is equally important to remember that peoples’ lives are still being talked about; no lasting social change is possible if this goes unacknowledged or minimized. Theory that doesn’t take lived experience into account is not very useful, and this is one of the many qualities of an academic approach to social issues that feminist disability theory–like feminist theory, disability theory, and other area studies–needs to keep at the forefront in order to remain vibrant, useful, and interesting.

Is There an Underlying Problem With How We Frame Autism? Gender, Race, and Misdiagnosis

When I was 16 years old, hands flapping rapidly against the arms of the therapy room chair, a psychologist informed me I had Asperger’s Syndrome. I had never even considered it before, I barely knew a thing about autism spectrum disorders, but once I started learning, everything quickly fell into place. But it left me wondering: why was I diagnosed so late? How did no one notice, in all the years I’d been at school, that I was autistic?

Continue reading “Is There an Underlying Problem With How We Frame Autism? Gender, Race, and Misdiagnosis” »

Ticked Off: Under Our Skin and the Gender(ed) Politics of Chronic Lyme Disease

Chronic Lyme disease is one of a rather varied group of disabling and/or debilitating health conditions that have in recent years become subjects of controversy within the medical community, as well as public and media scrutiny and skepticism—often to the consternation of people who deal with these illnesses on a daily basis. Similar to multiple chemical sensitivity (MCS), fibromyalgia, Chronic Fatigue Syndrome, and Restless Leg Syndrome, chronic Lyme has been a subject of considerable debate amongst medical doctors (see these posts on Science-Based Medicine for some interesting background material), and has also been particularly galvanizing within patients’ rights communities.

Despite the ongoing controversy, people who have been affected by chronic Lyme or some sort of post-Lyme syndrome have fought to be heard by the medical establishment, the media, and the general public. In recent years, “chronic Lyme” has been getting more attention from the media and the public, and has even come up in popular culture in recent years. In Sini Anderson’s 2013 documentary film on influential riot grrl feminist and musician Kathleen Hanna, The Punk Singer, Hanna reveals that the energy-sapping health issues that have been plaguing her since 2004 (and which caused her to stop performing in 2005) stem from chronic, late-stage Lyme disease. A feature-length documentary about Lyme disease, Under Our Skin, was released in 2009.

Continue reading “Ticked Off: <em>Under Our Skin</em> and the Gender(ed) Politics of Chronic Lyme Disease” »

My Color is F-You Fuchsia, or, Why I Decided to Leave Women’s Studies and Academia

[Note: All names and identifying characteristics have been changed.]

The exact moment that I knew I was finished with academia–and, more specifically, Women’s and Gender Studies, which I had once adored and wanted to pursue a PhD in–was in 2010, during a graduate Women’s Studies seminar at a rather middling-tier state university where I was enrolled as an M.A. student. I distinctly remember shoving my sunglasses on my cried-out, red eyes before going to class, sitting down, and then hunching over to make myself appear smaller. It was a month before the end of the semester. Right before class, the instructor–also the head of the department at that time–had called me in for a meeting because she was “concerned” about my attendance. The first week of the term, I had met with her to discuss my accessibility needs, and give her advance notice that my ongoing chronic pain and fatigue caused by fibromyalgia would sometimes prevent me from making it to class.

She seemed okay with this in the abstract, and mentioned that she’d worked with several students with special accommodation needs. Until this health issue actually (SHOCK/HORROR) got in the way of my making it to her class three times in a 16-week semester, I figured we were okay. There was even an accessibility statement on her syllabus!

Continue reading “My Color is F-You Fuchsia, or, Why I Decided to Leave Women’s Studies and Academia” »