My Experiences with Auto-Immunity and Why I Dislike the Term “Able-Bodied”
I dislike the term “able-bodied.” I see this term used frequently in academic and activist scholarship, as well as everyday language, often without giving the term its due scrutiny. As an academic who studies structural inequalities based on race, gender, and disability, I find that it assumes a binary system structured on ableist ideas. It also leaves out the real experience of the “in-between,” or the many chronic and invisible illnesses that millions live with every day, which often get worse or better with little reason or warning.
Viewing disability in a binary is important for scholars and activists to see how discrimination has been constructed throughout history and contemporary society. Yet binary thinking often rests on visual assumptions of the body that in many cases aren’t accurate representations of one’s physical ability. Because chronic illness is so fluid, it is important that we not assume levels of ability, which is often a limit of thinking in binary terms.
I was reminded of my dislike for the term while reading Daniel Wickberg’s article, “Heterosexual White Male,” published in The Journal of American History in 2005. Wickberg seeks to explain why and how a large group of American historians has turned “toward the critical history of dominant and privileged identity categories in recent years.”1
He writes of the trend toward examining histories of whiteness, masculinity, and heterosexuality, rather than histories of minorities, feminism, and LGBTQ. Originally met with some criticism, these understandings of the “norm,” as Wickberg has charted, actually strengthen our understandings of the “non-normative.”
Yet despite these benefits, it can be all too easy to fall into seeing categories of analysis as binary systems, or one vs. the other thinking, rather than in fluid terms. Wickberg cites critical race theory scholars who saw the notion of racial classification as racist. He also cites gender scholar Judith Butler who argues that the sex versus gender distinction reproduces a sexist order.2
While all of this analysis is compelling, nowhere in his article is disability addressed. Despite the usefulness of a simple disabled/abled binary for highlighting inequalities, terms that rely on binary thinking help to fortify an ableist order by emphasizing biological impairment rather than the social attitudes and structural barriers to ability.
So as an academic who studies disability history — while I get the usefulness of singling out disability vs. ability, the term “able-bodied” is highly problematic. It reinforces inaccessible social attitudes by insinuating that a lack of physical differences means a lack of bodily pain. It additionally ignores a vast majority of the lived experience of chronic discomfort.
Now it’s time to get personal. I’ve lived with an autoimmune disease since I was roughly two years old. Juvenile Idiopathic Arthritis (called Juvenile Rheumatoid Arthritis until recently), found in about 300,000 adolescents, is just one of many autoimmune disorders that roughly fifty million Americans live with.3 JIA has been a constant in my life, first manifesting itself in the form of fevers, joint swelling, pain, and redness, shortly after a bout with chickenpox. From then on those symptoms became a reliable nemesis in my adolescent years. And while symptoms in my adult life have been relatively subdued, the experience of autoimmunity has left its mark.
My earliest memories are of trips to the hospital and doctors’ offices, trying treatments, bouncing between specialists because there were so few pediatric rheumatologists in the early 90s, and enduring near constant pain; a lot to take in as a child. My elementary school teachers would comment that they could recognize flare-ups because almost every day, like clockwork, I would spike a fever and start to doze off in class.
Eventually, my JRA was credited with multiple injuries, exits from my favorite sports, and even some difficulty with friendships. I remember that it shaped health experiences not related to rheumatological visits, having had special eye exams due to an increased risk of uveitis and visits to a kidney doctor to keep up with potential side effects from medicine. I also remember my file at the dermatologist’s office emblazoned with large bright lettering saying, “JRA: WATCH ROOTS!” which to this day I do not entirely understand. There were few places I could go to escape it.
Beyond the physical discomfort and fatigue that autoimmune disorders produce, they can strain social situations as well. The best way to understand it from the outside is through the spoon theory, or the newer “matchstick theory.”4 The essential premise is that you start out the day with a set number of spoons — representing energy, physical ability, etc. — or matchsticks that can fluctuate day-to-day depending on how you feel.
Daily activities like work, cooking dinner, or some days even going to the store take spoons from your supply, and once your spoons are out, you can’t use any more. While this theory can apply to many different chronic illnesses and disabilities, I find that it captures what it feels like to live with an autoimmune disease fairly well. So when a friend invites you on a trip and your lack of spoons prevents it, oftentimes your social interactions depend more on the friend’s understanding, than on how awful you feel.
JRA hasn’t been all negatives. Thankfully, while much of my discomfort was through childhood, I have been in and out of remission in recent years, only experiencing relatively minor flare-ups. And my JRA is not a source of shame, but one of empowerment and pride. I have spoken with others who have it who wouldn’t take back the experience. In many instances, those with chronic illness learn to embrace that which we cannot change. I try to maintain a healthy lifestyle to keep pain and inflammation at bay and maintain my mental health — which I have found out recently JRA has affected more than I ever thought — through meditation and therapy.
My autoimmune disease has helped me cherish some of the simple things in life that many other people might take for granted, like a walk outside on a nice day. With little control over my own body, I have made strides to better control other things, like my professional life and engaging in relationships with those who really deserve both the time and “my spoons.” Through it all, though, the one thing that has been reliably there, no matter what life has thrown at me, has been my JRA. It has been there in all its pleasures, pains, and uncertainties, providing a source of consistent ironic comfort in a world of uncertainty.
The issue at hand, then, is not my JRA, but the social attitudes that suggest that since I have no evident physical differences, I should be fine to do whatever anyone else does. And language contributes to social attitudes and ideas. So when I hear or read the term “able-bodied,” I sometimes cringe, and not just because a doctor once dismissed my pain because I “looked fine.”
I cringe because it overlooks the murky grey area embodied in the very real chronic discomfort of disorders like JRA, lupus, Crohn’s, and others, along with the very real bodily and medical upkeep that is required in order to feel as good as you may look. It implies a normative conception of the body free of flaws, flaws that inevitably make up the human anatomy.
Instead of relying on “able-bodied” as a term for anyone with no evident visual impairments, we need to embrace the murky “in-between,” and keep our conversations, if not our word choice, open-minded by instead of assuming ability, assuming the “in-between.” One should not have to prove ability or lack thereof, regardless of physical circumstances. For lack of better terminology I argue for, if not a rejection of labels, a rejection of ascribing labels on others. That way, people living with autoimmune diseases or other chronic illnesses won’t be cornered by assumptions.
We cannot overlook the reality that such a large portion of the population lives with illnesses with symptoms that can come and go unpredictably but often with disabling effects. All of us need to break down the disability binary so to better understand all the myriad human bodily experiences and make our society that much more accessible.
Notes
- Daniel Wickberg, “Heterosexual White Male: Some Recent Inversions in American Cultural History,” The Journal of American History (June 2005) 156. Return to text.
- Ibid., 144. Return to text.
- “Autoimmune Disease Statistics,” American Autoimmune Related Disease Association, Inc. Return to text.
- Christine Miserandino, “The Spoon Theory,” But You Don’t Look Sick. Return to text.
Evan is an Instructor of History at SUNY Adirondack. He holds a PhD in History from University at Albany, and specializes in gender, disability, and war in the twentieth century. He focuses specifically on veteran disability and rehabilitation in the United States following the First World War.
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It’s basically impossible to explain on a job application, too, at least in my experience. Hard to explain a thinner CV than expected, even if the work is excellent. I have MS (I’ve written about it several times here at Nursing Clio). I’ve been relatively lucky with avoiding motor symptoms (knock wood), but I didn’t have the stamina to have children and a job at the same time. It seemed risky to “come out” as disabled, especially when I was concerned people would see MS-related tiredness as slacking since I don’t look like anything is wrong, or just assume that I couldn’t handle a job. I’m “out” now because I’ve committed to being an indy scholar, and I rely on my husband to support our family. I never did figure out what would be a way to navigate the tenure-track path with MS on board.