Many people with chronic health conditions, chronic pain, and/or mental health conditions are well aware that the mind can influence how the body feels on both acute and more long-term levels. A Google search for “chronic pain and depression” brings up around 42 million results; it’s not surprising that mental health concerns are a problem when it comes to chronic physical health problems, whether mental health issues precede chronic illness or spring up long after a person has been dealing with chronic pain and illness. In many cases, mental health issues and chronic illness/pain affect each other, but for those who have both, it’s not so much a chicken-or-egg problem of “which came first?” rather than trying to deal with and manage each issue on an ongoing basis.
The United States is deep in the throes of measles outbreaks on two coasts, in the Bay Area and New York City, with isolated patches of the disease elsewhere. This fully vaccine-preventable illness, which was officially ‘eliminated’ from the US, is experiencing a renaissance for one simple reason: people aren’t vaccinating their children, and they aren’t getting their adult boosters to ensure continued immunity throughout life.
It seems absurd, given that measles can be fatal and it can cause long-term neurological impairments in patients who recover from the infection. This applies not just to children, but also immunocompromised adults who can’t get vaccinated; people who are HIV+ or have autoimmune disorders are at serious risk if they get infected with measles. When an easy preventative step is available to address an illness with potentially serious consequences and people aren’t taking advantage of it, one is, quite reasonably, led to ask: why?
Heaven’s Gate was an American UFO religious Millenarian group based in San Diego, California, founded in the early 1970s and led by Marshall Applewhite (1931–1997) and Bonnie Nettles (1927–1985). On March 26, 1997, police discovered the bodies of 39 members of the group who had committed mass suicide in order to reach what they believed was an alien space craft following the Comet Hale–Bopp, which was then at its brightest.
–From Wikipedia’s entry on Heaven’s Gate (content warning on link for description of suicide and photos)
I’ve been fascinated with the Heaven’s Gate cult ever since I saw–as an 11 year-old–a huge photograph of the members’ dead bodies, apparently peacefully posed on bunkbeds, on the front page of my local paper, under the rather alarmist headline (and all-caps) headline HOUSE OF HORROR. As I picked up bits and pieces of information on the group that the news media breathlessly reported throughout April and May of 1997, I began to wonder if the “house of horror” headline was overblown; yes, these folks had committed mass suicide, but they had also found people to whom they could relate and live with peacefully (albeit in a fringe religious group). Was that so horrifying? To most people–and to the media–it seemed like the answer was a resounding yes.
In the United States, the government promises free universal access to education through high school (grade 12), providing funding to a vast network of public schools across the nation. The education system in practice is a deeply flawed, troubled institution, one rife with discrimination, inequality, and gross imbalances; children of colour going to school in a facility with clogged toilets and peeling walls while their wealthy counterparts enjoy an airy, leafy campus with impeccable facilities and the best, most modern technology, for example.
But on the surface, education in the United States is supposed to be a fundamental right, something accessible to all children. In fact, the country so aggressively pursues it that to not go to school is to find yourself meeting the truancy officer; if you don’t go to public school or who have parents with the power to pay for private education, you must be homeschooled with a curriculum approved by the state. In other words, this is more of an enforced right, as it were, at least for some students; again, inequality shows here when it comes to which students are closely watched and encouraged to stay in school.
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.
Content note: this piece discusses graphic details of caregiver abuse for the purpose of examining the scope and nature of abuse inflicted by people entrusted with the lives of disabled people who need assistance to complete tasks of daily living. Some of it may be disturbing. Be advised that linked stories contain explicit details.
Impairments can be highly variable in nature. Some allow people to live more or less completely independently, while others necessitate more interdependent relationships, and others require regular supportive care. Disabled people with with impairments that require some level of support are uniquely vulnerable to exploitation and abuse, and, thanks to social attitudes, they’re devalued by the people around them — including the representatives of the very government agencies that are supposed to protect them.
The United States is experiencing an epidemic of caregiver abuse, a problem that extends to the elderly community in addition to the disabled community, and it’s a problem that’s not just limited to US shores. One of the most sinister forms this abuse takes is that of the so-called ‘people collector,’ the people who take caregiver abuse to an entirely new and horrific level. In 2011, for instance, the Tacony dungeon case attracted international headlines, but the most disturbing thing about that case may not have been the suffering endured by four captives trapped in a basement for almost a decade — rather, the true horror lay in how many cases just like it haven’t been discovered yet.
An odd thing happens to me–at least once every few months–when I go out in public. It’s been happening since I was a teenager, and my most “visible” disability back then was a pronounced limp on my left side. Strangers seem very eager to try to engage me in conversation about the fact that I have a limp, or (more recently) that I use a cane.
I’ll be going about my day and/or doing things that lots of people do–running errands, going to see friends, going out for lunch–and, like the worst clock ever, on some days the annoying alarm of someone being concerned or just curious goes off:
“You have a limp!”
With minutes left on the buzzer, high school athlete Kevin Grow managed to score an astounding number of points for his team on 8 February. His feat was remarkable given that despite the fact that he’d served as team manager for the last two years, this was his second game ever out on the court. He landed 14 points in two minutes to bring his team to explosive, and decisive, victory. These kinds of stories large and small happen across the US every day, and most of them don’t make the news, but Grow’s did. Grow, you see, has Down syndrome, and the video of his feat went viral, leading the 76ers to sign him to a two-day ‘ceremonial contract.’ Continue reading
Recently, the Tumblr blog Chronic Femmes–which positioned itself as a resource for chronically ill femmes–was the subject of controversy after one of its moderators answered a reader question by saying that it was important for people with chronic pain, chronic health issues, or mental health issues to not “[appropriate] disabled” when identifying themselves as chronically ill (along with some other problematic statements, such as one’s disability status only counts if that person can receive or currently receives public assistance because of their disability). Many Tumblr users with chronic pain and health issues took exception to this–although the moderator who wrote the response, Kendall, quickly apologized for her mistake, the incident itself demonstrates a common misconception about chronic pain and illnesses that feature chronic pain as a symptom–that neither are “really” disabling or debilitating.
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 Tamra Davis’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.