In the academic discipline of Disability Studies, one of the topics in discussions of disability narratives and the social construction is disability and the so-called “super-crip narrative” or super-crip stereotype. The super-crip narrative follows a familiar pattern of documenting the experience of the individual who achieves great things in spite of a disabling condition. Usually great emphasis is placed on their “positive outlook” or optimism and sold to the public as a “feel good” story. See, for example, much of the recent coverage of Olympic sprinter Oscar Pistorius, known for his high tech carbon fiber prosthetic legs and childhood amputations as much as his running times. Other examples include historical figures like Helen Keller and FDR, or, more recently, Christopher Reeve.
One of the primary critiques of the super-crip narrative is that it emphasizes the idea that people with disabilities should be smiling, good-natured, and docile about their experiences (aka “The Good Cripple”), even when those experiences are painful, frustrating, and the source of a great deal of unhappiness. These stories tend to reinforce the expectation that people with disabilities should be grateful for any assistance they receive, no matter how limited or patronizing. They also put undue pressure on people with disabilities to “overcome” their disability— as though living with a disability weren’t difficult enough!— or, as in the case of a condition like autism, they suggest that disability is always paired with an extraordinary skill or talent. The Supercrip Narrative can also stand in the way of accommodations for people with disabilities, implying that “overcoming” is a matter of will and that accommodations are unnecessary, or that one should be nothing but grateful for any accommodation, no matter how small. Basically, the super-crip narrative says, “if you can’t overcome your disability, you’re not trying hard enough.”
While I am opposed to the sort of patronizing narrative designed to be an inspirational story that makes able-bodied people feel better about themselves, I still feel myself drawn to stories that highlight the achievements of people with disabilities and chronic illnesses, whether these stories are of “overcoming” or simply being. For example, I was interested to find out that Shannon Boxx, one of the members of the US Women’s Soccer Team, has lupus and Sjogren’s disease. Her story—both her bravery at revealing her diagnosis, and her commitment to continuing her soccer training despite the disease— is inspiring to me, as a fellow lupus patient.
I know I speak for many of us diagnosed with disabling chronic illnesses when I say that diagnosis, treatment, and the day-to-day experience can feel like the slow dismantling of your hopes, dreams, and aspirations. Suddenly things that seemed easy (or that required little thought or effort) become nearly impossible. On a good day you may find yourself making choices between, say, exercising, doing chores, or seeing friends. On a bad day you have to decide if you have the energy to take a shower or even get out of bed. Often pride gets in the way of revealing how terrible you feel (I know I would be lost without my DermaBlend concealer!). On those hard-to-get-out-of-bed days, reading about someone like Shannon Boxx helps me to feel something other than hopeless resignation that I will never achieve the things that I have set out to achieve in my life.
So how do we make room for stories about illness and disability that offer hope to those of us with similar experiences without enforcing the expectation that we be happy, compliant, inspirational figures to alleviate the guilt of those who are not (yet) ill or disabled? Certainly the move away from terms like ‘handicap” and “cripple” and toward people-first language has helped. But there’s still a great deal of misunderstanding and animosity toward people with chronic illnesses and disabilities—no need to look any further than the politic discourse in the US surrounding access to healthcare.
I think part of the responsibility is for those of us who struggle with disabilities and/or chronic conditions to document our experience in an honest and straightforward way, and to educate others about the destructive power of negative stereotypes. Stereotypes about psychosomatic and psychiatric disorders and “hysterical” women continue to delay the diagnosis and treatment of autoimmune diseases in both men and women (it took seven years from the onset of her illness for Shannon Boxx to receive her diagnosis). Well-meaning friends, family, and even doctors suggest things like brisk walks, therapy, and prayer. This is unacceptable.
The average person encounters disappointment and unhappiness in his or her life, and no one expects that person to remain smiling, grateful, or “inspirational” even in the face of great hardship and suffering. Why should the experiences of people with disabilities and chronic illnesses be any different?
The first version of the prompt for the opening day of Health Writer’s Month Challenge asked me to imagine constructing a time capsule related to my health condition. The second version asked me to consider a time capsule that tells my story. So I’m going to do a little of both.
Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?
Hmm. 2112. One hundred years is a long way off, and who knows what sort of technology will be available by then. I think the thing I want to capture in my time capsule is the excitement of the scientific discoveries that have been made in the past three decades, but also that there is still a great deal about illness that we do not understand, particularly autoimmune and rheumatological diseases. I would include articles about the development and release of the lupus drug Benlysta, as well as some materials to provide background on the issues of race, class, and access to treatment that Benlysta (and similar biological medications) raises in contemporary US culture.
Historians of medicine often puzzle over the way certain diseases were recognized (or not recognized) and treated (or not treated) in the past. I want to provide an archive to help explain how we early-twenty-first century people conceptualize rheumatoid arthritis and lupus, both in terms of the diagnosis and treatment of individual people, as well as how patients are treated as a group. I would include my own writing about my narrative of diagnosis, and my ongoing struggles during treatment, as well as images and stories of myself and others. I would primarily include printed materials (on acid-free archival paper, ‘natch) and I would also include video footage, though with the understanding that there might not be DVD players (or that the disc itself might be unreadable) in the future.
In the documents about my own experience, I also want to describe the complicated mass of phenomena that come together to form the medicalized body of a woman, including the history of hysteria, conversion disorder(s), and somaticisation as an issue of women’s physical and mental health; the absence of women from many clinical trials, particularly in the mid-20th century; and the political conflicts over such disparate issues as access to birth control, privatized health insurance, and medicare repayment (which affects access to rheumatological care). I want to provide a snapshot of what it means to be a woman, to be American, to be chronically ill, and to be disabled at this moment in history.
I want my time capsule to capture the struggles and the hopes of patients with rheumatoid disease and lupus. I hope that in 100 years these diseases will be cured—by advances in genetics and in the technology that has led to the development of biologic medications. If this is the case, I want my capsule to provide a window in to the experiences of individuals whose lives were ravaged by disease, and yet lived productive and even joyful lives despite their illnesses.
I’ve been thinking a lot lately about anonymity and privacy on the web, and I have to admit I’m feeling mighty ambivalent. Which is not to say indifferent; I mean ambivalent in the “moving back-and-forth between two poles” sense. I have strong feelings about both positions.
When I started this blog, it was in the months prior to my initial diagnosis, when I was sick and undiagnosed, stressed out by my PhD exams, and grappling with the emotional fallout of a breakup. I was just looking for a place to vent a little, and to write things down so that I might get some sort of pleasure or closure by ordering and narrating the events of my own life.
But then I got diagnosed with lupus, and I realized I couldn’t talk to very many people in my everyday life about what was going on. So I joined several forums, I created a Twitter account, and I started collecting (and connecting) to other blogs about lupus, arthritis, and autoimmune disease. Somewhere in the middle of all of this, I applied—and was accepted— to be an ACR Advocate for Arthritis. Suddenly I had gone from Megan: Autoimmune Girl Blogger to Megan: Autoimmune Arthritis Patient Advocate.
And here is where the great ambivalence set in. I know that I could be a more powerful force as a patient advocate if I revealed my full identity, but I also know there are consequences to the choice to “come out” and tell my story publicly.
I say a lot of revealing things in my guise as “mirroredlens.” I talk about my diagnoses, my meds, my pain, and my interactions with medical practitioners. I write about my experience of being visibly and invisibly ill and disabled, and how this affects my self-identity, my being-in-the-world, and my goals and fears for the future. I do this because it helps me make sense of my life. But I also do it because I’ve relied on the same kind of first-person narrative from other bloggers and writers to guide me and comfort me, and I want to be able to offer the same kind of guidance and empathy in return.
Despite all of my “virtual” honesty, the group of people I interact with face-to-face who know the details of my illness is relatively small. Partly this is because my diagnosis has been provisional for so long and I prefer to do as little explaining as possible. (“Huh? Wait, I thought you had lupus. Now you have RA too?”) But also because a) I am allergic to pity; and b) I am all-too-aware of the implicit and explicit discrimination toward people with disabilities. And it’s that second part that keeps me from removing my not-particularly-opaque veil of anonymity.
Now clearly I haven’t done a whole lot to obscure my identity on here– I have a photo (yes, that’s really me) and I use my first name. But I haven’t made any explicit links to other parts of my life, online or otherwise. Why? Because I am still (meds and disease activity willing) committed to pursuing a career once I finish grad school, and I am concerned that by disclosing my status too publicly I will jeopardize my chances at an academic job. (Google has a very long memory and the academic job market is ridiculously competitive. The reach of the ADA only goes so far.) It shouldn’t be that way, but it is.
So for now, my identity as a blogger remains separate from my identity as an academic, and my advocacy work falls somewhere in the middle, tenuously connecting the two. I know that I could be a stronger advocate by making those links legible, and I would likely also strengthen my academic work on disability theory by disclosing my status as a person with a chronic illness. But I also know that there are long-term consequences to that kind of candor, consequences that I’m not yet ready to negotiate.
Well, OK, maybe just a short one. It’s been a long time since I’ve blogged, but the microbloggery of facebook and twitter just aren’t cutting it these days. Maybe I just need an outlet while I’m writing my dissertation. I’ll let you know when I figure that one out.
I always struggle with the “where to start” question when it comes to narrative projects, autobiographical or otherwise. But you don’t need to know my life story for any of this to matter, so I’ll start with the thought that made me want to start blogging again, and hope that’s enough.
The other day I tagged myself in a photo a friend had taken me at a costume party a couple months ago. It’s a great photo of me, and I like it. But as friends– especially friends who don’t live here, and/or who haven’t seen me in a long time– started to post compliments, it began to make me uncomfortable. It’s only recently that I’ve started to really feel comfortable in my own skin. And while I recognize that I’m conventionally attractive in most of the “right” ways, it really took until my late 20s before I was able to see myself that way. I always saw myself as quirky and off-kilter, unconventional and interesting. Not attractive. But now, in my early 30s, I’m in possibly the best shape of my life, and I look good. And I’m finally able to see that. I won some genetic lottery that makes me tall, thin, and well-proportioned. I don’t want to be the kind of woman who can’t take a compliment. But there’s a huge caveat to all of this. (Isn’t there always?) It’s false advertising. And I do mean beyond the hair extensions and the fake eyelashes in this particular picture (which may make me sound like a drag queen, but I swear it’s no different than the average cosmetics ad– that new mascara will not make your eyelashes look like that unless you’re using glue, trust me). I’m down to the size I was when I was in college– or maybe junior year of high school, even– but it has very little to do with willpower, diet, exercise, or self-denial. Having defined triceps for the first time in my life? Well, I’ll take some credit for the yoga that made that possible. But the rest? Chronic illness. And it’s a magic bullet I cannot recommend.