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.
In the early morning hours of December 3rd, 1984, hundreds of gallons of methyl isocyanate (MIC) gas began to leak out of large industrial containers on the property of the Union Carbide factory in Bhopal, located in the Madhya Pradesh region of India. This incident, known as the Union Carbide disaster, is considered by many environmental activists and scholars to be one of the worst man-made industrial disasters of the 20th century.
Although the gas leak occurred decades ago, the continuing adverse health effects of the disaster that plague Bhopal’s citizens have far-reaching implications for a more global framework of disability rights—something that the Western disability movement has unfortunately left by the wayside.
The illness, health issues, reproductive problems, disability and related abject poverty that the Bhopal gas leak left in its wake signals important issues for disability studies and the disability rights movement–many of which remain unaddressed. The negative and debilitating effects that the Bhopal disaster caused, including illness, injury and disablement reveal some of the limitations of what scholars Clare Barker and Stuart Murray, in their 2010 article “Disabling Postcolonialism: Global Disability Cultures and Democratic Criticism,” call a “rights-centered” disability framework. This framework has taken particular root in the West and especially in North America. Of course, the rights-based social model that disability activists in the U.S. and Canada have forwarded since the mid-1970s is useful and empowering for many people. It has also been instrumental in separating the association with “able” as “good”/normal and “disabled” as automatically “bad” or abnormal.
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.
Love your body! Stop hating your body; start a revolution! These are just a few of the popular third wave slogans that are fairly well-entrenched as directives, or at least as aspirations, within feminist activism both online and off. There’s Love Your Body Day, sponsored annually by the National Organization for Women (NOW), Love Your Body weeks on various college campuses around North America, and thousands, if not millions, of web pages, graphics, and digital art pieces online that celebrate this theme and encourage women to do so every day. Many liberal feminists have proclaimed that body image –and a matching emphasis on loving your body–is “the” issue for the third wave, as this widely-anthologized essay by Amelia Richards explores.
At a basic level, LYB discourse can be a very positive thing, and it’s often a good stepping-stone for women who are new to feminist ideas. But it’s this very basic quality that can limit–and does –which kinds of bodies are acceptable to reclaim, have pride in, and even love. A cursory Google search for “love your body” brings up a plethora of images of white, visibly abled, young, cisgender, straight, and/or acceptably thin women encouraging other women to love their own bodies. From this cursory Google search, I found one image–the NOW Foundation’s LYB 2009 contest-winning poster designed by Lisa Champ–that shows a variation on the woman clip-art symbol with a (visible) disability. This single image was more than I was expecting to find, but even with this limited representation, there are still problems in how LYB discourse is built for and around abledness–not least of which is its leaving out of disabled bodies. The complex relationships that many women with disabilities of all kinds have with their bodies are left out as well.
I’ve been a lurker in the online skeptic community for a long time. I am also a feminist with fibromyalgia and several other health conditions (lifelong cerebral palsy and debilitating allergic reactions amongst them).
Whether it’s Dawkins-style puffery on which health conditions “actually exist” versus which are “somatization disorders” or, say, discussions of chronic illnesses that reduce said illnesses to strictly theoretical exercises instead of things (albeit misunderstood things) that impact peoples’ lives, there appears to be an unwillingness to make space for–and listen to–people with those very conditions.
Now, the notion of a skeptic and atheist with a “controversial” health condition will seem strange to some, and even stranger still because of the relative absence of skeptics with disabilities, chronic illnesses, and chronic health conditions in the online skeptic community. The feminist community — even online, where things like gender, ability, race, class, age, and sexuality supposedly “don’t matter” — suffers from similar problems when it comes to including and welcoming people with disabilities, as Neurodivergent K outlined in this excellent post at Feminist Hivemind. The old second-wave canard that women are physically strong is an unquestioned assumption in many modern feminist circles — and has the effect, unintended or not, of leaving out women with disabilities who are not strong or whose health conditions prevent them from being physical dynamos. The idea that chronic illnesses and disabilities like Chronic Fatigue Syndrome, Fibromyalgia and related pain/fatigue conditions are bad for the feminist movement–because women with these conditions apparently fulfill the stereotype of women as “weak” and fragile–has also gained some traction in feminist theory, most notably from feminist literary critic Elaine Showalter, who wrote a book in the late 1990s positing that CFS, Gulf War Syndrome and other “controversial” illnesses were media-spread, hysteria-driven epidemics comparable to alien abduction. Add to this the blithe unconcern that mainstream feminism has with disabilities of all kinds–and with women who have disabilities–and you’ve got a fairly unsafe environment for feminists of all genders who happen to have disabilities, or who think that (GASP) disability, chronic pain, and illness are feminist issues! After a while, it starts to look like current online “feminism” is only concerned about fighting for the rights of abled women–those without chronic pain, illness(es), physical disabilities, mental health conditions or who are neuroatypical. Thanks, feminism!
[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!