Who’s afraid of chronic illness as disability? An entire field, apparently.

Here is a crucial point: the exhaustion of disabled research subjects comes by way of our historical investment in believing that disability makes a person available for excessive experimentation and bureaucratic oversight (Snyder and Mitchell 28, original italics).

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.

Though always vaguely aware of the prevalence of this position within the field, I stumbled into it headlong and with full force around a year ago, when a discussion entitled “Ethical Treatise on: Disability is not an Illness?”cropped up on the DS-HUM listserv (see the archives for a thread posted in March 2013). [1] 

The original poster, Terry Tracy, wrote:

Fundamental to my arguments is making a case for why they must make an ethical distinction of seeing a disability different from an illnessOn DS-HUM I think we share visceral understanding of that significant distinction. (boldface emphasis mine)

So began my protest against this alleged distinction, one of which “we” supposedly “share a visceral understanding.” You can read the full DS-HUM thread if you’d like to see how the conversation unfolded and what my counter-arguments to Tracy and other participants were. I don’t need to re-hash them all in this post. [2]

Related to arguments of whether illness and disability “fit” into the same category is the ongoing debate surrounding what in DS is known as “the social model.” This model is premised on a binary split between “impairment” (the underlying “physical specifics” of an individual’s embodiment) versus “disability” (the socio-cultural, economic, and institutional oppression visited upon particular bodies as a result of prejudicial attitudes and beliefs regarding certain forms of embodiment). To give a concrete example of how the social model operates: a paraplegic man has an “impairment” that prevents him from walking. However, he only becomes “disabled” when he enters an environment—such as a university campus with few or no ramps, non-functioning elevators, etc.—that does not permit him to navigate through its contours using his wheelchair.

The social model stands in opposition to the “medical model,” according to which “disability” (understood medically as synonymous with “impairment”) is portrayed as an individual problem that is both a.) undesirable and b.) needs to be “fixed” or “cured” through medical/institutional/scientific intervention.

Mitchell and Snyder have proposed a third model of disability known as the “cultural model,” which posits “disability” as in part historically determined and located within enclaves of culture such as charity systems, institutions, popular culture, advertising, etc. Interestingly, “the cultural model”—whose name gives the impression that it takes into account cultural differences in approaches to disability—remains squarely focused (as does the vast majority work within DS) on cultural locations of disability within an Anglophone—specifically Northamerican—context. [3]

Of these three dominant models (social, medical, and cultural), Mitchell and Snyder’s take (9-10) on the “impairment/disability” debate is the closest to my own. The impairment/disability binary is clearly modeled after Feminism’s sex/gender binary, which Judith Butler famously demolished in her monograph Gender Trouble, stating: “Indeed, sex, by definition, will be shown to have been gender all along” (11). Butler convincingly argued that sex and gender are two terms which properly refer to the same thing, i.e. – individual “situations” (to use Simone de Beauvoir’s word) produced by sociocultural and historical readings of specific modes of embodiment and physical markers codified as “sexed” and/or “gendered.”

In my view, “impairment” and “disability”—much like Butlerian “sex” and “gender”—are functionally synonymous and interchangeble terms. Neither should be understood as “purely physical” nor “purely social” (or cultural, or historical, etc.). Rather than preserving this artificial and ungainly binary and assuming there is a pristine divide between “the biological” and “the social,” dissolving the dyad of “impairment/disability” enables us to refer simply to “disability,” by which we can mean: “the situation produced when any individual exhibiting a ‘non-normative’ mode of embodiment enters into and interacts within a given social, cultural, linguistic, and historical context.”

“Disability,” in other words, becomes reformulated as a dynamic produced by interactions between that which is biological or physical with that which is sociocultural, historical, linguistic, etc.

Seen from this perspective it becomes clear that, terminologically, it makes little sense to continue separating “illness”—in particular “chronic illness”—from “disability.” Even according to the most extreme version of the social model, in which disability is theorized as a “purely” sociocultural and historical (e.g. – absolutely non-physical, non-biological) phenomenon, chronic illness can and should be considered a form of disability given that our understanding of what constitutes a “chronic illness” as well as how “chronic illness” is interpreted are culturally, socially, and historically dependent. [4]

Still, questions remain: why do certain groups within the field of Disability Studies have a vested interest in upholding a sharp divide between “illness” and “disability”? Why, in DS, is there a stigma against illness? Why, within the taxonomy of disability, is “illness” assumed to be both “inferior” to disability and (unlike disability) undesirable?

Susan Wendell does an outstanding job of explicating some possible responses to the above questions. In the introduction to “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities,” she writes:

[…] modern movements for the rights of people with disabilities have fought the identification of disability with illness, and for good reasons. This identification contributes to the medicalization of disability, in which disability is regarded as an individual misfortune, and people with disabilities are assumed to suffer primarily from physical and/or mental abnormalities that medicine can and should treat, cure, or at least prevent. (162)

and:

Thus, in promoting the liberatory version of social constructionism, it is safer and more comfortable to focus on people who are healthy disabled […] Illness is equated with impairment, even by disability activists and scholars, in ways that disability is not; hence there is anxiety to assure nondisabled people that disability is not an illness. (162; 165)

It seems to me that there are several issues at play here: the first is that Disability Studies as a field is resistant to “medical” intervention (or anything perceived as potentially constituting “medical” intervention). This is what Wendell touches upon when she discussed the “medicalization” of disability, and the assumption (widely rejected by DS scholars and activists) that disability should be “treat[ed], cure[d], or at least prevented.”

Disability Studies’ antagonistic relationship with medicine is completely understandable in light of the long history of medical violence (institutionalization, forced sterilization and eugenics, forced medical intervention and experimentation) perpetrated in the name of “treatment,” “cure,” and “prevention” upon disabled people—including many disabled people who either did not require or simply did not want any form of medical “support.”

That said, many disabled people living with sensory and mobility impairments don’t reject adaptive and assistive technologies such as wheelchairs, scooters, prosthetics, hearing aids, braille, and a myriad of other gadgets and devices now being re-figured in the public imagination not just as adaptive and assistive, but as “cool” and aesthetically pleasing. Historically, a great number of prosthetics were originally developed by physicians and surgeons, and even today many types of cutting-edge adaptive and assistive technology are designed, improved upon, and piloted with the help and support of the medical community.

Depending on how one views adaptive and assistive technologies, they could in theory be framed as either unwelcome attempts to “cure,” “treat,” or “fix” disability (after all, if “I’m fine just the way I am” then why do I need any adaptive or assistive technology?) or as creative ways of enabling disabled people by helping us to navigate environments that might otherwise prove hostile.

So at this juncture I’d like to make a couple of suggestions:

1.) Unless disabled people are prepared to reject any and all forms of adaptive and assistive technology, disabled people—in addition to DS scholars and activists, although I am aware that there’s a great deal of overlap between these groups—must recognize that by embracing adaptive and assistive technologies, we are in fact embracing one form of “medicalizing” disability. It is not possible to separate the history of prosthetics (and therefore of adaptive/assistive technologies) from the history of medicine or from the individual and collective work of physicians and surgeons. As disabled people, we may choose to frame adaptive and assistive technologies as “(en)ablers” that are, well, awesome—but in doing so we need to remain cognizant of the fact that much the medical community will still probably view them as devices to “treat,” “cure,” or “fix” us. Same devices, different ways of conceptualizing them. So whether we admit it or not, we are in fact embracing to some extent the “medicalization” of disability if we use any form of adaptive or assistive technology at all.

What I want to add is this: it’s OK to both say that you don’t want to be pathologized, enfreaked, or portrayed as “abnormal,” “less than,” or in need of “fixing” AND to take advantage of whatever adaptive and assistive technologies you find available and useful.

Allow me to repeat: IT’S OK TO SIMULTANEOUSLY DO BOTH OF THESE THINGS.

REALLY. IT IS.

It doesn’t make you less of a DS scholar or activist. What it does is make you less attached to out-dated, rigid, often unhelpful binaries that are quite frankly impeding the growth of our field and limiting the possibilities of what we can do, think, and explore together.

2.) Chronically ill people—sorry, I mean people with immunological disabilities—also make use of adaptive and assistive technologies. In some cases, these are the same technologies “healthy disabled” people avail themselves of: there are people with Multiple Sclerosis who use wheelchairs and scooters. There are people with Rheumatoid Arthritis who use canes. But then, let’s push this further. After all, if we can extend “adaptive and assistive” to the realm of spike-suits to ensure that people stay out of our personal space and armor for internal organs (even if only prototypes at the moment), why can we not say that an asthma inhaler is an adaptive technology? Why can we not say that pre-filled syringes of an immunomodulatory drug are an assistive technology for a person with MS? Why can’t antiretroviral pill cocktails be an adaptive technology for someone with HIV/AIDS?

You see where I am going with this. People with chronic illnesses—and obviously I don’t speak for everyone with a chronic illness, but I know that I speak for myself and for many others with whom I’ve discussed these issues—do not necessarily view ourselves as “broken,” “inferior,” or even needing/wanting “treatments” or “cures.”

Full disclosure: I have Multiple Sclerosis and I’ve had it for nearly 7 years. If you saw me on the street, you’d think: “Wow, she looks perfectly healthy.” I can probably kick your ass at almost any form of competition unless you’re an Olympic athlete or have a knack for math because, well, I suck at math.

I do not wake up in the morning and think about how “sick” I am. I don’t walk around thinking I “Oh, God–I need treatment.”

And, no, I do not want or need a “cure.”

That’s right: I do not want to be “cured.”

Not all people with chronic illnesses want to be “cured.” We do not necessarily view our embodied mode of existence as in need of “fixing.” Sound familiar?

I identify as disabled. I see myself as someone with an immunological disability [5] who uses an assistive technology [6] that enables me to participate alongside my non-disabled peers in employment as well as social and civic life.

Would a physician frame my situation in this manner? Most likely not. He or she would instead say that I “have a disease” which is being “treated” using “an immunomodulatory drug.” In other words, the physician would medicalize Multiple Sclerosis….but would probably also medicalize Deafness, blindness, paraplegia, and so on. The same physician would probably frame any form of adaptive or assistive technology—including those designed for so-called “healthy” disabled people—as devices designed to “treat,” “cure,” or “normalize” disabled bodies.

At the end of the day, your use of ramps and my use of syringes are not fundamentally different. My use of syringes is only “medical” and “different from” your disability if you willfully choose to emphasize the differences between us.

The presumption among DS scholars and activists that chronic illness cannot be a disability because “people with chronic illnesses want to be cured” is a sweeping generalization that I find unfairly simplistic and not accurately reflective of the rich complexity of experience among those living with chronic illnesses.

As for the notion that chronic illness (“unlike disability,” goes the claim) represents an “individual misfortune,” I once again respectfully disagree. Chronic illness—if treated, for the sake of argument, as something other than disability—can certainly be framed as an “individual misfortune” (just like disability can if it is “medicalized”), but it is not par excellence an “individual misfortune” any more than disability itself. On the contrary, many nations including the U.S. are increasingly acknowledging the role of chronic illness as an issue demanding both collective responsibility and collective action. It is unfortunate that in many cases this acknowledgement is part and parcel of treating chronic illness as a “crisis” or “burden” in need of “elimination” or “cure,” but chronic illness is far from being exclusively regarded as a “personal tragedy” in 21st-century society and culture.

My access to immunomodulatory medication should be no more of an “individual problem” than a wheelchair user’s need for ramps or a blind person’s need for braille. 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). The recently enacted Affordable Care Act is a step in the right direction—albeit not far enough, in my opinion—since it effectively makes individual and collective access to health care “social problems” (or “social responsibilities,” the flip-side of “problems”), which should be borne by all adult participants in a contemporary democratic society.

The second quotation by Wendell above explains Disability Studies’ preferential consideration for “healthy disabled” people over the “unhealthy disabled” (aka chronically ill). Wendell explains how the “healthy disabled” have worked to craft a “liberatory” narrative of disability divorced from physical realities of pain, discomfort, difficulty, etc. in favor of images of “able disabled” people who are “exactly the same as everyone else” and “can do everything that non-disabled people can do, provided we have the proper support systems and accommodations in place.” Once again, the desire to cling to this narrative stems from DS scholars’ affinity for the “social model” over the “medical model.” If “impairment” is separated from “disability” and “disability” is viewed as solely—or at least primarily—an effect of sociocultural and historical inequalities perpetrated against people with “impairments,” then it becomes easier to focus our attention and that of the “healthy,” non-disabled public on external sources of oppression that hinder disabled people. This ideology also dovetails nicely with DS scholars’ and activists’ insistence that “disability is not an illness” (because, of course, illness is a “terrible, awful, bad” thing that “nobody wants”) and therefore “does not need to be cured” (unlike illness, which “of course” we “all” want “cured”).

The truth, as Wendell notes, is that even “healthy disabled” people will at various points in life experience pain, discomfort, weakness, failure, breakdown, etc. that is directly related to their disability or disabilities (162-166). Even if one wholeheartedly accepts the purist “social model” wet dream of a perfect binary separation of “impairment” from “disability” (which, again, I do not), there is no such thing as a purely constructed “disability” without some underlying “impairment.” And there is no “impairment” without some degree of, at minimum, physical difficulty.

Because I use “disability” as an intersectionist term incorporating physical/biological and social/cultural/historical elements, I see no reason to disavow any aspects (including potentially “negative” ones) of the physical realities of embodied experience shared by many people with disabilities, including those with chronic illnesses. When Wendell mentions that “Illness is equated with impairment, even by disability activists and scholars, in ways that disability is not,” she seems to be hinting at something like: “Illness is associated with weakness […] in ways that disability is not” (or “does not want to be”). The elephant in the room here is the figure of the supercrip, and with it the pressure to uphold, in the public imagination, the view of disabled people’s abilities  only.

In response I contend, as have others before me, that the supercrip—the “inspirational” and “heroic” figure that functions as the inverse of “the pity-worthy charity case”—brings with it an equally problematic trove of stereotypes and ableist attitudes. By treating “illness” as both other than and inferior to “disability”—by favoring 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.

Is there another kind of future we can create—one that avoids replicating the same old impairment/disability and chronic illness/disability binarisms? Is there common ground upon which we can build a better foundation for the field and open our work up to fresh approaches?

As a preliminary gesture in this direction, I suggest the following list of concerns common to both “healthy” and “unhealthy” disabled people:

  • Access. “Access” can mean a variety of different things. When we start to count chronic illness as a disability, we expand the definition of what “access” means. “Access” is about building ramps and making sure elevators work. It’s about accessible bathrooms. It’s about getting rid of the fluorescent lights that can inflict pain on people with certain sensory disabilities and minimizing ambient stimuli that can overload people with autism. It’s about providing resources in different media that can be accessed by people with varying sensory preferences and/or bodily configurations. But “access” is not just spatial or even social. “Access” can mean “access” to the adaptive and assistive technologies of asthma inhalers, pre-loaded syringes, and antiretroviral therapy. “Access” can mean technologies that facilitate the navigation of bureaucracy—whether that means the mountain of paperwork necessary for a university student with ADHD to get time-and-a-half on exams or for a blue-collar worker living with depression to secure an ADA-sanctioned leave of absence from his job. “Access” can also mean empowering people and providing tools for navigating health care bureaucracy. [7]
  • Equal opportunity. “Equal opportunity” means not just to work, but also to socialize and play. Ensuring equal opportunity for both healthy and unhealthy disabled people is equally as important. Both healthy and unhealthy disabled people share some common barriers to equal opportunity, the primary barrier being social (mis)perceptions about disability. Rather than the healthy disabled stressing that “we can do everything you can do (unlike those sick people!),” perhaps a more productive message would be: “With the right support systems and tools, disabled people (including chronically ill people) can participate in labor, leisure, and civic life alongside our non-disabled counterparts.” This concern is, of course, related to “access” in that both healthy and unhealthy disabled people often require a.) accommodations and/or b.) adaptive or assistive technologies in order to achieve equal opportunity.
  • Public (mis)perceptions. 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.
  • Adaptive and assistive technologies. Again, these may be ramps, braille, and prosthetics for you and syringes, inhalers, and pills for me. Does it really matter? They’re all “medical” devices (or not), depending on how we choose to frame them. They’re all “not about curing” (or not), depending on which narratives we construct around them. My pre-filled syringes help me participate in work, leisure, and social life; they’re not going to “cure” me and I don’t actually want to be “cured” anyway. They’re an adaptive/assistive technology in the form of an injection. There doesn’t have to be a stigma attached to them any more than there should be one attached to a prosthetic hand.
  • Celebration of “non-normative” modes of embodiment and perception. I use “celebration” as opposed to mere “acknowledgement” or even “acceptance” because I genuinely believe that not only is it possible to celebrate, yes, even chronic illness, but that it should be celebrated. The fact that I have a chronic illness is part of my identity—not something about me that needs to be “fixed” or “cured.” Many “healthy disabled” people have expressed similar sentiments—that their Deafness, or blindness, or paraplegia, or autism etc. is an identity rather than a “problem” and that what is needed is education, understanding, and improved access—not a “cure” or “fix.” If you’re a member of the “healthy disabled,” you don’t strengthen your identity by placing yourself in contrast to some chronically ill Other. Or maybe you do, but it’s not necessary for you to do this, and it’s ultimately counter-productive for you, for your “unhealthy disabled” counterparts, for the field of Disability Studies, and for society as a whole. I am sure that we with chronic illnesses have valuable experiences and ways of inhabiting and perceiving the world that we can share with you, just as you all have important insights about your mode(s) of embodiment and perception that you can share with us. There is no reason to perpetuate internal divisions merely for the sake of perpetuating them.
  • Desire to confront and change systems and conditions that oppress all of us. Things like poverty; bureaucracy (medical, educational, governmental, and other); public misperceptions about disability; stereotyping (“charity case”/”supercrip”); lack of access (to spaces, to health care, to maintenance medications, to adaptive and assistive technologies, to choices); internalized notions of what constitutes “good” bodies (including the idea of illness—any kind of illness—as “bad” and undesirable).

***COMPLETE FIRST DRAFT: SUNDAY, FEBRUARY 2, 2014. 22:16H CST***

Notes

1 – This direct link to the discussion may or may not work. (Apologies in advance if it doesn’t—I tried!).

2 – A Cliff Notes version of some of my arguments can also be found within the text of an article located here.

3 – More on this later. It’s the subject of another post—another series of posts, actually.

4 – Consider illnesses labeled as “chronic” (or not) based on prevailing sociocultural and historical beliefs and/or advances in pharmaceutical and medical technology during a given period. “The vapours” existed as a legitimately recognized chronic condition in the 19th-century but no longer do. Similarly, HIV/AIDS has gone from being an acute to a chronic illness over the past 20-30 years.

5 – Social model purists would say “immunological impairment.”

6 – Namely pre-filled syringes of an immunomodulatory drug called Rebif, aka Interferon Beta-1a.

7 – More on this later. It’s also the subject of its own series of posts, many forthcoming on this blog.

Works Cited

Butler, Judith. Gender Trouble: Feminism and the Subversion of Identity. New York and London: Routledge, 1990. Print.

Snyder, Sharon L. and David T. Mitchell. Cultural Locations of Disability. Chicago and London: The University of Chicago Press, 2006. Print.

Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” The Disability Studies Reader, 4th ed. Ed. Lennard J. Davis. New York and London: Routledge, 2013. 161-173. Print.

Note: These are only the Works Cited other than those directly linked to in the body and/or notes of this post.

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3 Responses to Who’s afraid of chronic illness as disability? An entire field, apparently.

  1. Pingback: Complicating Disability Studies’ Relationship to Medicine | It's complicated.

  2. Pingback: Chronic Illness as Disability | EDS Info (Ehlers-Danlos Syndrome)

  3. Pingback: Am I Disabled? When is (Invisible) Chronic Illness a Disability? | Chronic Illness, Coping & Critiques

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