The relationship between chronic illness and disability – including critical disability studies & the disability justice movement – is something I have actively been trying to understand for years, as my illness has continued to reshape my life. Invisible illness is a strange and alienating thing, and it has been a confusing process.
Part of my confusion stems from the fact that there isn’t a consensus within the field of Disability Studies itself. There are conflicting opinions, and many scholars and activists emphasize a clear separation between chronic illness and disability, while the lived experience of many is that the two often overlap. My confusion has been further exacerbated by a chronic spoon deficit that makes interpreting academic theory and legal/bureaucratic regulations difficult, as well as by the insidious pervasiveness of internalized ableism that plants niggling questions (‘are you really that sick? pfft’) in my head while I’m trying to make sense of things.
Actual questions I have typed into google and/or asked Siri over the past few years: When is chronic illness a disability? When isn’t it? Do I ‘belong’ in the disability justice movement? Or is chronic illness different? Am I disabled?
There are some very practical sides to this: Should I tick the ‘disability’ box on this job application to self-identify for employment equity purposes? Am I sick enough? Will my employer assume that I’m faking because my illness is ‘invisible’? Am I appropriating a struggle that doesn’t belong to me if I tick this box? Conversely, is my own internalized ableism holding me back from ticking this box: Do I have an unreasonable and stereotypical impression of what disability looks like?
In this post, I figure out how to personally self identify with attention to legal/bureaucratic definitions of disability as well as theoretical trends in disability studies. I also consider implications for the disability justice movement and reflect on techniques for coping with internalized ableism, which often manifests as persistent and invasive thoughts, creating barriers to accessing resources and support.
Legal/Bureaucratic Definitions of Disability
Perhaps surprisingly, legal/bureaucratic definitions of disability have felt more clear to me than my partial and and contradictory impressions regarding disability from activism and academia. This is the legal/bureaucratic/government definition of disability where I live:
According to this definition, I am quite clearly a person with a disability. Hmmm.
Chronic Illness, Disability Studies & Disability Justice
Although the Ontario government defines me as a person with a disability, many scholars in Disability Studies (DS) still maintain a clear separation between chronic illness and disability. According to Valéria M. Souza,
“The prevailing position within the field of Disability Studies is that illness and disability are two different phenomena, corresponding to distinct sets of embodied and—perhaps—socio-cultural experiences that bear little or no resemblance to one another.” (source)
How, then, does chronic illness fit within critical disability studies & the disability justice movement?
In order to understand the relationship between chronic illness and disability in more depth, we’ll have to delve into some academic disability studies theory. Since 1) my theoretical training is in an entirely different discipline, and 2) I no longer have enough ‘spoons‘ and sustained cognitive dexterity for combing through piles of material to sift through these theoretical debates for myself, I will draw heavily from an illuminating and insightful essay by Valéria M. Souza, entitled Who’s afraid of chronic illness as disability? An entire field, apparently. I learned a lot from this essay, and I highly recommend reading it in its entirety – Souza clearly and succinctly contextualizes trends in DS theory, and her arguments have important implications for disability justice.
Souza explains and contextualizes social, medical and cultural models for understanding disability, as well as the historical context that rationalizes the separation of chronic illness and disability. She ultimately argues that chronic illness should be considered a disability. Furthermore, she argues that by setting up illness as implicit weakness in contrast to the ‘healthy disabled’, many disability scholars are reproducing the same oppressive ideologies that they initially set out to dismantle. According to Souza,
“By treating “illness” as both other than and inferior to “disability”-by favouring images and voices of the “healthy disabled” while suppressing and silencing those of the unhealthy disabled”- DS scholars and activists are revealing the extent to which they themselves have internalized mainstream ideas about what constitutes “good,” “correct,” and “normal” bodies. Instead of challenging concepts of “health” or the unreasonable standards of performance applied to human beings in neoliberal capitalist societies and identifying these as neither just and ethical nor conducive to the fulfillment of human potential, they are proposing to liberate the “healthy disabled” by oppressing the “unhealthy disabled.” They are, in short, colluding with the very same ableist system they claim to abhor and reject.”
Furthermore, situating chronic illness within disability studies has tangible implications for disability justice. For example, “By re-framing chronic illness as disability, issues such as access (or lack thereof) to health care and prescription drugs become Disability Studies issues (and, beyond that, civil rights issues).”
Souza ultimately concludes that:
“Rather than contrasting “healthy” and “unhealthy” disabled people, let’s confront—as many times as necessary—and work together to dismantle the unhelpful stereotypes of both the “disability charity case” and its flip-side, the “supercrip.” Let’s stop internalizing mainstream ideals of what is “good,” “normal,” “ideal,” “correct,” and “functional.” Unhealthy and healthy disabled people have more in common with one another than either group has with healthy, able-bodied people—like it or not, choose to face it or not. We do ourselves and each other no good by reinforcing the general public’s perception of one group as “more able than” and/or “superior” to the other.”
Chronic illness is a disability justice issue. Conceptualizing chronic illness as disability is also a disability justice issue.
Barriers to Self-Identification = Internalized Ableism
My own internalized ableism has perhaps been the biggest barrier in figuring out the relationship between chronic illness & disability and how to self-identify. For example, my internalized ableism likes to minimize the impacts of my illness and my need for accommodations:
‘Are you really that sick? Couldn’t you just try harder? Maybe you could just push through. So what if it causes debilitating pain, technically you CAN do these things. Like, it’s not like you 100% definitely can’t, ever. I dunno, maybe you’re just being lazy or whiny or exaggerating. Pfft suck it up cupcake, people have it way worse than this.‘
Welcome to the realm of internalized ableism and invasive thoughts. If you’re unfamiliar with the sensation, then I’m envious of you. I suspect, however, that this is relatable for many chronically ill people who have transitioned over a period of years from passably healthy & capable of keeping up with other able-bodied people, to sometimes (often?) struggling with basic necessities of life (‘How will I make dinner for myself tonight?’ ‘I know I can make it to the grocery store, but can I carry the groceries home?’ ‘Can I work? Will I be able to stay on my feet for an entire shift?’ ‘How will I get to to the pharmacy, I think I’m too dizzy to walk by myself.’)
Luckily there are techniques for recognizing and silencing the insidious voices of internalized ableism, and I have learned some useful approaches from tumblr. Exhibit A:
Silencing Internalized Ableism, Technique #1: Similar to the example above, pretend your internalized ableist thoughts are being said to you by someone obnoxious. For maximum annoyance and therefore effectiveness, I personally picture an entitled white bro in his 20s who perhaps thinks that MRAs ‘have a point’, that ‘feminism oppresses men,’ that ‘white people are oppressed,’ or maybe that intersectional analyses of disability, gender, race and sexuality are ‘useless liberal drivel,’ or some other such nonsense. This is an effective technique for me. Use whatever imagery works best for you.
Imagining someone else – especially someone annoying and offensive – saying aloud your invasive internalized ableist thoughts is usually enough to show just how problematic and inappropriate they are, and the first step in lessening their power.
Someone (eg an imaginary entitled duebro) is questioning the legitimacy of my lived experiences of chronic illness? This person is minimizing the impacts this illness has had on my life? Oh hell no. Nope. Quiet down, internalized ableism, you are completely full of nonsense.
Silencing Internalized Ableism, Technique #2: If the above technique doesn’t work for you, try pretending that someone is saying these things to your chronically ill and/or disabled friend. In a situation like this, I would tear the offensive person to shreds with my scathing words and wrathful glare.
Wait. Those are my thoughts? What? No, brain, not cool. Also shouldn’t I care about me as much as I care about my friends? We have some work to do it seems.
Internalized ableism prevents us from accessing resources, support and accommodations. If you have an unkind and intrusive voice of internalized ableism that minimizes your experiences and the impacts of your illness, please don’t listen. You deserve support. And so do I.
Am I disabled? Yes. Obviously.
I am allowed to use this word, and I must work to unlearn my own internalized ableism.
I am chronically ill and (invisibly) disabled. Next time I will check the box next to Persons with Disabilities.
How do you self-identify, and how long did it take you to figure it out? What techniques do you use to overcome internalized ableism?
As always, I would love to hear (er, read) your thoughts.