11    Patient Stories

Renarrating Illness and Valuing the Rejected Body

Wendy Peters

When we were at the bar together, you asked me, “What is embodied knowledge anyway?” I quickly shrugged my shoulders, shook my head, and replied, “I don’t know. It’s a lot of things.” If you had asked me, “What is semiotics?” I would have said, “It is the science of signs.” To the question of what embodied knowledge is, I cannot respond so easily. I want to understand embodiment better and I have a growing sense of why embodied knowledge is so difficult to comprehend within Western-colonial archives of knowledge. To acknowledge the glimmers of understanding that I have found, I offer a reflection on the past. To do so, I return to the only journal that I have ever kept in my adult life—one that documents the period between learning that I had a pituitary tumour in early 1997 up until my postsurgery recovery much later that year.

To begin, I situate my illness journal and this chapter as examples of embodied knowledge. I trace the profound and mundane effects that these benign cells had, and still have, on my writing, knowledge, and life. I return to my illness narrative, examining how Western-colonial constructions of the body—previously beyond question in my mind—informed my understanding, experience, and narration of illness. I employ Susan Wendell’s (1996) conceptualizations of “bodily normalcy” and the “rejected body” in order to interrogate how these normative discourses and their attendant identities—as related to health and illness—have affective, social, and material consequences. Specifically, I foreground how the expectation of perpetual good health operates in relation to identity, friendship, social interactions, and social relations within a neoliberal political economy. In revealing my complicity and internalized dominance in relation to the ideal of bodily normalcy, I elucidate some of the ways in which privileged subjectivities operate, interact with each other, and are bound together with rejected bodies. As my journal reveals, my identity is implicitly constituted within and through the marginalization of those who are rejected and devalued in relation to bodily normalcy, neoliberalism, and Western medicine.

This work was inspired by a graduate-level seminar titled “Embodied Learning and Qi Gong,” created and taught by Roxana Ng, which I had the pleasure of taking in 2001. Through assigned readings on Western and Traditional Chinese Medicine and through the practice of qigong, Ng created a classroom encounter that challenged colonial hierarchical thinking, specifically in relation to embodiment, mindfulness, health, and illness. In addition to teaching breathing techniques, focused intention, and the internally focused martial art of qigong, she offered tools that enabled and urged students “to be open to critical analysis of their own social location and what these obscure from their view, what remains unarticulated in their language, and what has been absent from their thoughts” (Nakata et al. 2012, 135). Ng’s course offered “an entry point for understanding the presence of other ways of viewing the world and one’s position in it” (132), a place where “students can be led to develop awareness of the limits of various positions, the persistent pervasiveness of ‘all-knowing,’ ‘taken-for-granted’ Western frames” (133). Ng urged her students toward “thinking about thinking” (133) and gaining “knowledge about knowledge” (126). She also challenged Western norms of classroom space and university content as students actively moved about the room, using our bodies and focusing on our breath. In keeping with Ng’s pedagogical aims, this chapter, which is based on a paper I wrote for the seminar, demonstrates my attempts to recognize and comprehend the positioning effects of Western knowledge and claims to know, as well as the social relations that ground these discourses in bodies and everyday lives.

While drawing examples from my own journal makes such evidence inherently anecdotal, I make every effort to contextualize the excerpts and highlight how my beliefs, experiences, and emotional responses are not solely the result of individual consciousness or intention but are formed within Western discourses in popular circulation. As Rubén Gaztambide-Fernández (2012, 42) writes, “The characteristics of this particular moment are neither spontaneous nor natural. . . . White supremacy and hetero-patriarchal order violently enforce colonial modes of human relationality, fabricating subject positions through intersecting and interlocking discursive regimes of gender, race, class, sexuality, and ability, among others.” For the purposes of this chapter, I focus specifically on privileged subject positions and social relations produced within dominant Western discourses of health and illness. It is my hope that the following examples will begin to answer the question that I answered so poorly when we spoke at the bar that night.

Illness Life-Writing: Context, Content, and Embodied Learning

In 1997, I was diagnosed with a tumour on my pituitary gland. (You don’t know this about me.) I was sick for at least two years before my surgery; I stopped menstruating, my breasts lactated, and I experienced severe headaches. After my surgery to remove the tumour, I began writing about my experience of becoming ill. I felt powerfully compelled to document my experience for myself and for others. I was afraid that I would forget this experience that had changed my life. Nancy Mairs (1997, x–xi) observes that illness and disability life-writers tend to write the book that they themselves would most like to read, a book that would inform them about this uncharted terrain and allow them to guide and support an imagined reader in similar distress during this isolating and frightening time. Wilfrid Sheed, for example, “recounts his surviving polio, addiction-depression, and cancer of the tongue” in his 1995 memoir, In Love with Daylight (quoted in Mairs 1997, x):

I would have sold my soul cheerfully (if I could have done anything cheerfully) just to hear from someone else who had passed this way and could tell me what was actually happening to me and what to expect next. But among all the thousands of inspirational and pseudoscientific words I could find . . . not one came close either to describing what I was going through, or suggesting anything useful to do about it. . . . So I’ve had to write it myself, scene for scene—all the things I would like to have read back then.

As Thomas Couser (1997, 15) notes, “Generally, illness narratives reflect mixed motives: an urge for self-exploration and a desire to serve those with the same condition.” My desire to write my own illness narrative was strongly tied to each of these reasons: to chart the territory for others in similar situations, to understand and explore what happened to me, and to remember the experiences for myself.

I wrote in my journal about being given the diagnosis of having a pituitary tumour (casually, over the phone, while at work), going through CT scans (with their mysterious and disconcerting warning that “you may feel a powerful urge to void during the test”), exhaustive blood tests (and getting rear-ended en route back to work with one arm severely emaciated following the onerous triple bolus test), and then waiting seven months for surgery. I wrote about my anxieties, relationships with friends and family, the experience of learning that I would probably not be able to have children, and reconceptualizing my body from a healthy one that required (seemingly) no thought on my part to a sick body that I hardly knew how to relate to. I wrote about the support that I received from my partner, the difficulties of getting time off from my job and still maintaining some privacy around my illness, the many interactions with doctors, the medical tests, and the science behind my illness. I wrote a veritable novel about my experience, and it is a piece of writing that I hold very dearly. My story of illness seemed to pour onto the pages, where the words are still almost too hot, bloody, and salty to read. During my postsurgery recovery, I became obsessed with writing this story and I remember sitting at my desk throughout the night, writing and crying.

A concealed mind-body connection underpins my illness journal: I wrote ecstatically, fuelled by daily doses of the steroid prednisone. This drug, ingested and digested by my body, produced the predicted side effects of insomnia and euphoria. The steroid inspired what felt like boundless creativity, and I wrote by hand for hours and hours, even as I could barely walk from one end of my small apartment block to the other. The content of the journal is also implicitly embodied, since “rogue” pituitary cells produced these thoughts, words, and reflections. In fact, abnormal cell division led not only to these very specific insights but also to broader changes that I made in my life. While illness is typically and, at times, understandably regarded as an inherently negative event, my tumour awoke in me (at least temporarily) the ability to perceive a wider range of options for my life. As Yuk-Lin Renita Wong notes in her contribution to this collection, the mind shifts perpetually between past, present, and future, but the body is always in the present. It is not surprising, then, that being diagnosed with a tumour directed my attention toward my body and the present, ultimately revealing dissatisfaction with my life as it existed. These cells contributed to my decision to leave my partner, immediate and extended family, friends, job, and life in Winnipeg to undertake graduate school in Toronto, where I took Ng’s course. I believe that these cells inspired my life as it exists today in the most dramatic and mundane ways. I sit at my desk in North Bay overlooking Lake Nipissing because of these cells; I would not have left Winnipeg otherwise. I have a PhD because of these cells; my life was on a very different path prior to my diagnosis. The phone rings as I write and it is the ophthalmologist’s assistant reminding me of my appointment tomorrow, a yearly follow-up because of the tumour. During the writing of this chapter, I receive an email informing me that Ng has passed away. I mourn now, but with a sense of gratitude, because of the path these cells set me on. These “disordered” and “abnormal” cells shaped my life and learning in profound and ordinary ways, just as their absence gave form to my existence previously.

I regard my journal and this chapter as embodied texts, learning, and knowledge. The journal narrates a new awareness of my body, a shift away from a physically normative and healthy body that I did not have prior cause to think about. I grapple with my identity, since it is premised on a normative body that is simultaneously foundational to how I understand myself and—through the sleight of hand available to normative, privileged, universalized identities and discourses—completely invisible to me. My journal reveals how bodies appear and disappear in relation to Western medical discourse. In writing from the perspective of a primarily normative and “healthy” person—then and now—I interrogate the troubling implications and effects of such identifications and discourses as they appear in my journal.

Constructing Experience and Affect

To focus on the material existence of these cells and their lasting impact on my life is to overlook how Western-colonial knowledge implicitly shaped my response to having a pituitary tumour. For example, at the time of my diagnosis, my doctor pointed to the centre of her forehead to give me a sense of the location of the pituitary gland and the tumour. Yet later that day, when my friend Michelle located information online about pituitary tumours under the heading “brain tumours,” I was utterly shocked and far more terrified. I wrote in my journal,

The word brain had not been mentioned. Why was the information in that section? Was it an error? Was the pituitary part of the brain? Oh my God! And there were many tears shed to the mantra in my head of “brain tumour.” That—I could not believe. It sickened me. (9 November 1997)

I had a brain tumour and would be having brain surgery. There was something distinctly and, to my mind, self-evidently ominous about these word combinations.

In 2001, Ng explained to me that within Traditional Chinese Medicine, the brain is conceived of as “a gelatinous mass” that is of no greater importance than any other organ. Shortly thereafter, I encountered Linda Tuhiwai Smith’s ([1999] 2006, 48) characterizations of the brain and mind: “Whilst the workings of the mind may be associated in Western thinking primarily with the human brain, the mind itself is a concept or an idea. In Maori world views, for example, the closest equivalent to the idea of a ‘mind’ or intellect is associated with the entrails and other parts of the body.” It was only through learning about non-Western understandings of the brain that I could reread my fear as steeped in Western conceptions that consider the brain to be the seat of personality and cognition while simultaneously elevating these faculties above other abilities. Encountering differing conceptions of the brain and the mind—their meanings and consequences—highlighted how Western knowledge imbued my experience with certain affective and experiential effects while ruling out other outcomes.

In Foucauldian notions of discourse, power operates through and produces the Western medical discourse of the brain while placing this knowledge beyond question. My response to having a brain tumour is characteristic of Foucault’s understanding of power as productive; I learned and internalized the common-sense Western discourse about the brain, and this belief, in turn, produced fears and emotions that were particular to the discourse. While fears and emotions are often understood as natural—even primal and beyond question—they can also be understood as discursively constructed effects of power. In another discourse, a brain tumour might evoke entirely different responses and emotions. Learning about non-Western paradigms enabled me to understand my original illness narrative, as well as my embodied and emotional experience of having a pituitary tumour, as constructed, relational, and produced within Western discourses concerning the brain and the mind.

Licence to Be Ill: Handing Bodies Over to Science

Western medicine structured my illness experience in other ways as I gave it absolute primacy over all other forms of knowledge. Extremely painful headaches and the cessation of my period became fake or dubious without a doctor to validate these signs and symptoms. For example, when I reflected on the moment that I first saw the results of my CT scan, I wrote,

It was a relief now to finally know all of the facts, after almost three months of waiting. Yes, I had a tumour, it was big, and it was coming out. And I felt vindicated. I had not been malingering. [My partner] and I had both seen the tumour, and it existed. (11 November 1997)

Foucault’s theory of power enables the observation that in my choice of words like “the facts” and “malingering,” Western medical discourse can be seen here to have the “effects of truth” (Foucault 1980, 118). Western medicine offers diagnoses that make bodily symptoms and signs appear real and legitimate. I desired vindication through a medical diagnosis in order to be proven right and reasonable and, perhaps more troubling, to be cleared of blame or suspicion. The implication of such a commentary is that people who experience bodily signs and symptoms but lack a Western medical diagnosis are unreliable and pathological. Within this logic, embodied knowledge alone lacks the credibility to produce the effects of truth.

Furthermore, in an era of neoliberalism, an ideology whereby responsibility is assigned to individuals rather than institutions, my suggestion that not having a diagnosis is equal to malingering presumes that the failure to receive a diagnosis is not a systemic failure of medical science but an individual failure of an ostensibly manipulative and deceitful person. Such a perspective may appear anecdotal in this context, but it certainly reflects the experiences of people with recently disputed illnesses, such as myalgic encephalomyelitis, chronic fatigue syndrome (Brown 1995), and fibromyalgia (Jutel 2011). Their bodily signs and symptoms have been negatively structured in terms of medical validation. Handing over bodily authority and credibility to Western medical systems also has material consequences, including the allocation of government benefits for disability assistance or worker’s compensation (Walsh, Stephens, and Moore 2000, 159). Power operates through Western medical diagnoses to organize patients’ experiences of their bodies and their credibility as “legitimately” sick or malingering subjects. My journal entry illustrates how the authority ascribed to Western medical diagnoses and the lack of credibility accorded to bodily knowledge are taken up and lived by individuals in the culture. The cultivated Western practice of handing over bodies and their reality to medical science makes it especially challenging to understand and interpret embodied knowledge.

Bodily Normalcy and the Rejected Body

Conceptualizing my experience as both materially driven (for example, by abnormal cell division) and discursively constructed by Western discourses enables a further analysis of how my narration of having a pituitary tumour reflects and privileges the Western ideal of a perpetually healthy body. My journal highlights a fissure between having “the ‘normal’ body . . . a young, energetic, pain-free body with all parts present and a maximum range of graceful movement” and having a “rejected body” when “our ability to meet the standards is threatened in some way” (Wendell 1996, 91, 88). Susan Wendell explains:

Implied in any idealization of the body is the rejection of some kinds of bodies or some aspects of bodily life. I use the terms “rejected body” and “negative body” to refer to those aspects of bodily life (such as illness, disability, weakness, and dying), bodily appearance (usually deviations from the cultural ideals of the body), and bodily experience (including most forms of bodily suffering) that are feared, ignored, despised, and/or rejected in a society and its culture. (85)

Similarly, my journal reveals fear, ignorance, and a rejection of having a “sick” body, as well as the attendant identity of “sick people.” Reflecting on the day of my CT scan, I wrote:

I can’t believe that this machine is around me. Aren’t these for sick people? Whenever I have seen them on TV I always assumed that these people in my place were fighting off death. I’m not sick, what am I doing here? (12 November 1997)

My writing reflects an unwillingness to view my body as a changing and organic form and demonstrates an explicit rejection of illness, death, and sick people.

While my crisis of identity and fearful denial appear unique and personal, they are predictable enactments of dominant Western discourses. Wendell (1996, 91) explains:

It is not just from fear of being or becoming abnormal that the rejected body is shunned. It is also shunned from fear of pain, illness, limitation, suffering, and dying. Yet the cultural banishment of the rejected body contributes to fear of those experiences by fostering ignorance of them. . . . They belong to those with disabilities and illnesses, who are marginalized, not “ordinary” people, not “us.”

My illness narrative mirrors this powerful discourse as I recoil from having been diagnosed as having a rejected body and am evidently horrified at the prospect of being sick. I fear and deny the illness that I embody, while rejecting all other sick people who might similarly call attention to the impossibility of lifelong bodily normalcy. I enact what Foucault ([1978] 1990, 55) characterizes as “a stubborn will to nonknowledge” when I deny and ignore the realities of illness and death, particularly as they affect me.

Importantly, Wendell (1996, 88) highlights how the discourse of bodily normalcy produces an attendant and often taken-for-granted identity in those who conform closely to this privileged Western discourse and, I would add, have no cause to identify strongly with those who do not:

For many of us, our proximity to the standards of normality is an important aspect of our identity and our sense of social acceptability, an aspect of our self-respect. We are unlikely to notice this until our ability to meet the standards is threatened in some way. An injury or a prolonged illness often draws the attention of non-disabled people to this previously unnoticed facet of their self-images.

Predictably, prior to being diagnosed with a pituitary tumour, I did not notice how my subjectivity was implicitly a “healthy” self forged in opposition to sick people. This invisibility is in keeping with all privileged identities in which the position of dominance is favoured, unmarked, universalized, unexamined, and therefore often indiscernible to those who embody it. Those who conform closely to the dominant position are not readily encouraged to be aware of their own subject position or the unearned privileges accrued as a result. In contrast, those with less or no access to the privileged subject position are often in a better position to recognize its existence. For example, an individual with a chronic illness or one who is near death is, in theory, in a better position to recognize the ubiquity of the discourse of perpetual good health and the pain-free body, as well as the social avoidance of those who cannot conform to this ideal. True to form, it is only in the fissure between health and illness that my universalized and privileged “healthy” subjectivity became visible to me. My proximity to bodily normalcy allowed me to rely on the discourse as an integral part of my self-image—as I demonstrate when I insist that I am not like sick people—yet remain uncritical of its impossible expectations and harmful implications.

Disclosure, Discomfort, Disruption

I was in the privileged position of being able to pass as healthy during the time leading up to my surgery, and disclosures concerning my illness became a frequent focal point in my journal. Disclosures to close friends, acquaintances, and work colleagues each revealed unique issues in relation to the discourse of bodily normalcy and its effects. Internalized and externalized forms of discipline were revealed through my anxieties prior to and following disclosures, others’ reactions to my disclosures, and (perceived) material consequences for making my illness known in the workplace. My focus here is on “‘governmentality’ or, as Foucault puts it, the conduct of conduct, which governs our governing of our selves” (Titchkosky 2007, 83). In engaging with the journal excerpts below, I assert that discomfort and anxieties leading up to and surrounding disclosures of illness serve to discipline the speaker, implicitly urging them to remain silent in order to actively preserve and protect the discourse of bodily normalcy. Not disclosing illness, for example, implicitly sustains the myth that bodily normalcy—with its impossible expectation of perpetual good health—is real and attainable. As the following examples suggest, those who fail to live up to the ideal are often positioned as awkward and challenging.

In recollecting the process of diagnosis and waiting for surgery, I wrote,

I remember that largely, it was difficult for me to tell my friends. It’s a difficult topic to bring up in a relationship built on common assumptions of mutually good health. I felt daunted by the shock that I would inflict and have to deal with. (10 November 1997)

In my own words, the social relations between friends who conform closely to the expectations of bodily normalcy manifest in the everyday as “common assumptions of mutually good health.” These expectations operated as unarticulated presumptions and premises within my existing friendships and were only detectable to me when I was placed in the position of having to shatter the shared and unacknowledged assumption that we would all be healthy forever. In my journal, I regard my disclosure as causing a disturbance, and in many ways such disclosures do disturb. They expose the unspoken discourse of bodily normalcy and reveal the social relations that ground it in reality.

Another Western discourse that shaped my experience is the relegation of illness to the private realm. In positioning sickness as a private matter, it becomes improper to discuss this topic in “polite” conversation. To introduce such a taboo topic is to risk making others uncomfortable. Furthermore, positioning illness as private favours independence over interdependence. As Thomas Couser (1997, 177) articulates in relation to discourses pertaining to physical disability, “Society commonly considers disabled people the embodiment of trauma, personal disaster, or failure; ignoring the profound ways in which we are all interdependent, Western culture’s individualism stigmatizes or blames those who fail to be ‘self-sufficient.’” While physical disability and illness are not interchangeable, the neoliberal injunction to be independent—financially, physically, and emotionally—resonates with my own illness narrative and can be seen obliquely in the next two journal excerpts regarding disclosures of illness to acquaintances and at work. Furthermore, the imperative to keep such matters private serves the purposes of a culture that fears, ignores, and rejects those who cannot conform to bodily normalcy.

The following passage from my journal illustrates some of these tensions:

I recall one instance where I ran into an awkward situation, when I met up with [an acquaintance] at the folk festival and she said that she had heard that I was “unwell.” Yes, I had a tumour I told her, but I was going to be okay. “Where?” she asked. “Brain,” I said, a little too abruptly. [The woman], with her children seemed rather shaken and tried to tell me about a yoga group for women with cancer. I was not at all interested, but I let her bumble along as she could not remember where it was or the name of the woman who put it on. This was an unsettling exchange and I left feeling sorry that it had to be that way. My friend said “I feel sorry for that poor woman,” as we walked away. It had been an odd moment for all involved. Sometimes I wished that my personal life could stay completely private, but in the end, the support of others helped me immensely. (10 November 1997)

As Susan Wendell (1996, 91) points out, rejected bodies suffer from “cultural banishment,” and this is revealed, arguably, in this very awkward casual conversation concerning my brain tumour. Even though I was clearly asked to provide the private information that transgressed the norms of casual conversation, it is notable that my friend and I were left feeling sorry for the person who received the information that I had a brain tumour; she appeared to be taken aback, disconcerted, and anxious. Disrupting the discourse of bodily normalcy may create a personal crisis for the sick person, but it also creates a social crisis for those around them.

Furthermore, the last line of the journal excerpt signals a tension between wanting and needing the support of others (interdependence) and feeling bad about disclosing my illness because these are ostensibly private matters (independence). Conforming to the neoliberal expectation that individuals should take care of themselves or extend their support group narrowly to their immediate family, such encounters exerted an often not-so-subtle social pressure to keep silent and endure my illness alone rather than seek extended community or collective support. These social norms around “polite” conversation marginalize the realities of sickness and sick people while upholding the discourse of bodily normalcy. Returning to neoliberalism and the practice of assigning responsibility to individuals, the “problem” of illness is not configured in my interaction with this woman as a systemic issue of normalizing a discourse of bodily normalcy that all will fail to attain in the long term; rather, the sick individual is held accountable for embodying and failing to conceal the knowledge that the culture wants to forget. In these uncomfortable interactions, the problem is not usually figured or experienced as the unreasonable expectations of the listener but is attributed to the disclosure.

A disclosure that reveals further dimensions of the social relations of bodily normalcy relates to my employment as a counsellor at that time. About trying to decide whether to tell my boss about my illness, I wrote the following:

I decided not to tell my boss, although I liked her a lot. I wanted her to know [that I was sick] because I was often upset and emotional, but I knew too well that my term was up in April and as a sick employee, I might lose the credibility that I had worked hard for. I did not want to be terminated over this. (9 November 1997)

In this passage, I am most struck by the word credibility and the notion that I had worked hard for it. There are numerous slippages and conflations here, and in retrospect, I identify the credibility that is (ostensibly) at risk as simultaneously discursive and material. Discursively, I see this excerpt as reflecting a dominant Western notion that a “good employee” conforms to rationality and bodily normalcy. My credibility as a counsellor and an employee was implicitly predicated on a silent body, perfect health, normative abilities, restrained emotions, and “appropriate” behaviours: in other words, on a privileged body that acts as a vessel for the rational mind. The credibility that I feared losing was premised, at least in large part, on my proximity to the favoured discourse of bodily normalcy and therefore was actually credibility that I had not worked for. My narration favours a liberal notion of power that obscures social inequalities while conflating privilege with hard-earned success. Such thinking “masks the fact that some benefit more than others from the present situation (and also exonerates from guilt those who benefit)” (Gaztambide-Fernández 2012, 58). Correspondingly, I characterize my successes in individualistic and self-flattering terms rather than as someone jeopardizing a systemically unearned privilege that in turn has produced material privileges. This notion allows me to establish myself as hard-working, deserving, and credible in opposition to those whose bodies are rejected and marked as other; their credibility as employees is implicitly questioned in my narrative.

Materially, I feared losing my contract renewal if I disclosed that I would be going on sick leave only a few months into my new contract. If employers privilege profits or fiscal financial restraint over responsibility to their employees, it is in one’s best interest to conceal information regarding illness if one is in the privileged position of being able to do so. My narrative points to the (perceived) necessity of maintaining bodily normalcy in some workplaces, especially in a neoliberal economic context with growing dependence on a contractual and “flexible” workforce; it also reveals the ways in which the “good employee” implicitly conforms to the discourse of bodily normalcy. Those who cannot conform are figured as lacking in credibility and perhaps even failing to work hard enough. As Susan Wendell (1989, 113) writes, “When you listen to this culture in a disabled body, you hear how often health and physical vigour are talked about as if they were moral virtues. People constantly praise others for their ‘energy,’ their stamina, their ability to work long hours.” This health, stamina, and credibility stands in opposition to those who cannot conform to these expectations, expectations that may eventually undermine one’s own health. The demand to work harder in “flexible” and contractual contexts creates circumstances of high stress and high labour turnover, making it increasingly difficult for employees to maintain a healthy body and mind. Furthermore, the material and discursive pressures to exhibit boundless physical vigour and energy in the workplace while keeping silent about illness serve to privilege and normalize the discourse of the normative and “universal” healthy body while rejecting those who cannot embody the standards of bodily normalcy. Such workplace expectations perpetuate an imagined norm in relation to which we are all bound to fall short, and even those who conform closely are still only close enough. In some sense, revealing and critically understanding the discourse of bodily normalcy dissolves the self-other binary that this discourse produces, since no self can ever meet its expectations.

While the excerpts from my journal appear particular to me, they are not original or unique. They are Western discourses played out at the level of the individual and their interactions, the social relations that give life and currency to the discourses of bodily normalcy and rejected bodies. These discourses can be seen to animate identities, relationships, actions, experiences, emotions, and knowledge for those who are marginalized and for those who are privileged within them.

Postscript

In choosing to (belatedly) share my experience of having a brain tumour, I worried that you would expect a story of tragedy. I hope we can now agree that it is more of a mystery. How is it that the myth of bodily normalcy remains so tenacious in the face of everyday and inevitable illness, bodily suffering, disability, aging, and death? In banishing rejected bodies—culturally, conversationally, visually—we cannot actually avoid the vicissitudes of life. In analyzing my illness narrative, it seems to me that the rejections, investments, and justifications that I enacted largely served to protect and naturalize the privileges accorded to those whose bodies (temporarily) fall closely in line with the myth of bodily normalcy. These everyday social relations simultaneously reinforce and obfuscate social inequalities that marginalize and blame all who (inevitably) cannot conform. My journal elucidates how privileged subjects’ sense of self and other are constituted within a neoliberal symbolic order that frames unearned privileges as invisible, earned, and well deserved while holding marginalized individuals responsible for failing to live up to its untenable terms.

As Randelle Nixon and Katie MacDonald suggest in their contribution to this collection, privileged subjects are often hailed as benevolent rather than as implicated and complicit in the oppression of others. In analyzing my illness narrative, I seek to contest and reveal aspects of Western-colonial knowledge, including privilege, complicity, and internalized dominance in the realm of health and illness. I do so with the recognition that the discursive questions that I employ largely sidestep embodiment and the physical body, even as bodily normalcy is the focus of the analysis. Such a slippage is analogous to Eve Tuck and Wayne Yang’s (2012) observation that anti-oppression educators have readily taken up notions of decolonizing knowledge and minds while avoiding discussion of the decolonization of land. As this collection aims to redress, the material world of social justice is too often overlooked. While Ng always foregrounded the importance of materiality in her work, she also taught her students that a commitment to social justice requires understanding how privilege operates, actively resisting disembodiment, and transforming discursive and material inequities embedded within Western medicine, epistemologies, and knowledge. In critically reflecting on the construction and enactment of the privileged “I” within Western medical discourse, the myth of bodily normalcy, and neoliberalism, I offer this chapter as a starting point toward material and symbolic transformations rather than as a conclusion.

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