Abstract

In December of 2007, the Globe and Mail, one of Canada's national newspapers, published a series of articles written by columnist Ian Brown. In the three part-series entitled, "The Boy in the Moon," Brown narrates his life with his cognitively disabled son. This paper explores Brown's articles in relation to Judith Butler's (2004) "Violence, Mourning, Politics," and conducts an analysis of how cognitive disability is being enacted as "not quite a life" (34). This paper demonstrates how Brown's articles tell the story of cognitive disability as a state of brokenness, some-thing that requires fixing. Significantly, when disability defies and/or resists fixing, it is discursively re-framed as a tragic loss. By attending to the making of disability in Brown's articles, this paper is more broadly interested in how disabled and non-disabled bodies ('we') are being formed in and through social spaces.

"Who counts as human? Whose lives count as lives?"

- Judith Butler

Precarious Life: The powers of mourning and violence, 20

Introduction

Between December 1st and 15th 2007, the Globe and Mail, one of Canada's two national newspapers, published a series of articles entitled "The Boy in the Moon," written by feature reporter, Ian Brown. In the three part-series, Brown narrates his life with his 11-year-old son, Walker, who is cognitively disabled. Brown's articles, accompanied by large pictures of he and his son, were spread across the newspaper. Front page, above the fold, the articles were hard to miss. Indeed, during those first two weeks of December, the articles seem to generate a lot of 'talk'. Overwhelmingly, this 'talk' was positive. The 'Comments' section of the Globe and Mail Online was overflowing with praise. Finally — commentators wrote, again and again, often drawing on the same words — someone has garnered the needed 'courage' to write 'honestly' and from the 'heart' about what it is like to 'live with' disability. I would like to linger with the notion of 'living with' disability and reframe it as a question: What does it mean to be 'living with' disability?

In the newspaper, the notion of 'living with' disability is almost exclusively drawn upon to reference an individualized condition (for example, 'there are approximately 200,000 Canadians living with autism'), characterized as an individual 'problem' that seems to require an equally individualized 'solution'. This paper presents a contrasting view. I begin from an understanding that disability is not solely or simply in some bodies and not others, it is always made in the social spaces between bodies (Michalko 2002; Titchkosky 2007). Disability is always both lived and lived with. In this way, when we are talking about 'living with' disability, we are also talking about how disability is related to and is constituted by a relationship to non-disability.

I should note that as I draw upon the terms 'disabled' and 'non-disabled,' I am not intending to use them oppositionally or simply, but rather as designations that are fluid and relational. Disability marks the body in ambiguous ways — it appears and disappears, is noticed and is hidden — as we move through different physical and social spaces, and as we find ourselves in different political and historical moments. It's also critical to consider how disability marks different bodies in different and relational ways; systems of ableism come into contact with racialized bodies, queer bodies, classed bodies, gendered bodies, bodies that already have been touched by other (and perhaps multiple) systems of oppression. And so, we — all of us — are making sense of this thing called 'disability' that is many and shifting, and are endowing it with particular and divergent meanings. With this in mind, disability can and must be theorized as an interactional process — a 'living-with.' I am choosing to focus my analysis on Brown's series of articles because they are engaged in narrating Brown's (non disabled) life as a life lived in relation to disability — a life, literally, with disability.

As Brown's articles narrate his life with disability, they vividly and, often, poignantly, tell the story of Brown's multifarious relationship to disability. Brown's narrative of 'life with' disability tells the story of a father who suffers deeply with not always being able to comfort his son; a father who struggles with not being able to communicate with certainty with a son who does not use words to speak; a weary parent of a disabled child straddling his desire that his son might learn to 'fit in' to a normal world, and his longing that the normal world might welcome and, even, desire his son. Brown's narrative also tells of intimate moments of comfort and connection — the story of a child nestled into a father's side as they fall asleep together after a long night of crying, a private language of tongue 'clicks' shared only between father and son. Brown's articles braid together stories of joy and anguish, connection and isolation, pride and shame (Chandler, 2009): 'life with'.

This paper will critically examine one aspect of Brown's articles that appears in the midst of these stories; as Brown's articles are engaged in narrating life with disability, they, simultaneously, narrate the cognitively disabled life as a "lost" life. In the face of this seeming contradiction, this paper will explore Brown's series of articles in relation to Judith Butler's (2004), "Violence, Mourning, Politics." In doing so, this paper will trace how Brown is drawing upon and narrating his own life with disability and will conduct an analysis of how disability, particularly cognitive disability, is being enacted as "not quite a life" (Butler 2004, 34). I have chosen to focus on this particular aspect of Brown's articles as a way of initiating a conversation about the risks we face as we take on the impossible and necessary task of telling stories of our lives with others — of narrating a 'we'. I ask: if this is a story about 'living with' disability, what kind of story is being told? And, how are we all living with this story of disability? By posing these questions, it is my hope that we might begin to imagine how 'we' — disability and non-disability — might tell our story differently and otherwise (Butler, 1993; Titchkosky 2007).

The impossible and necessary task of narrating a 'we'

The headline of the first article in Brown's series reads: "I am Walker Brown" (Brown 2007a, F1). However, Walker Brown does not narrate the story that follows. The sub-headline informs readers that it is Ian Brown who will be telling the "intimate story of his life with Walker" (Brown 2007a, F1). The sub-headline very simply and straightforwardly treats Ian Brown's story of "his life with Walker" as synonymous and interchangeable with Walker's own story. "[Walker] can't speak" the headline informs, "but he has much to tell us" (Brown 2007a, F1). Yet, it is Ian Brown's gaze that directs where to look, what is to be seen, and thus, what story will be told. Brown is not merely positioned as an interpreter of disability, readers are informed that he is charged with the task of "search[ing] for answers about the worth of the handicapped life" (Brown 2007c, F1). Brown is positioned as 'searching for' and, presumably, revealing 'answers' about the (already questioned and questionable) disabled life. It is by way of his proximal (familial) relation to disability that Brown is seen to have some kind of 'intimate' access to knowing disability.

One way disability is known is by way of the family relation. Indeed, Brown's narrative appears in the context of an entire genre of literature that tells the story of 'living with' disability from the vantage point of the relationally non-disabled family member. The familial relation is not a simple one; it is an embodied relation and as such it is a messy, tangled nexus of love, hope, grief, anger, disappointment, joy and, always, always more. We are ever proximal. We are infinitely distant.

Because this article grapples with (and is also the product of) the paradox of 'living with' one another, this paper represents the risk of approaching a critique of Brown's articles, without locating the processes of ableism with Ian Brown, the father, the person. Brown's articles appear in a cultural context that informs us, in covert and overt ways, that the disabled body represents a deviation from how bodies (and minds and senses) ought to be. And so, I search for a way to attend to how newspaper articles and family stories are engaged in the making of the meaning of disability, without falling back on these same systems of moral interpretation.

I do this for several reasons. Systems of moral interpretation do not bend and give to fit the complex contours of lived experience. Like disabled people, parents of disabled people have often been marginalized in the search for moral clarity. For example, parents of disabled people — mothers in particular — are very often discursively framed as morally or practically "culpable" for the "tragedy" of their child's disability and are, therefore, under constant public (and self) surveillance. I do not want to reproduce these (inherently ableist) tactics of moral surveillance by measuring Brown's role as a parent in relation to normative moral standards of how 'good' parents 'ought to be'. My critique — an interpretive critique — asks readers to resist our (persistent, seductive, collective) desire for moral clarity and attend to what Brown's narrative — itself a social, political action related to but separate from his actions as a parent — is already accomplishing. Tanya Titchkosky (2007) writes: "Texts appear to people, and with real consequences, texts enter our lives. In the context of our lives, texts come to life. This life reflects, if only in a flash, the meaning of the being of that which the text speaks…" Following Titchkosky, this paper asks: how is the meaning of disability and non-disability, already, being made and organized in Brown's text?

Brown's articles attempt to 'answer' questions like who is recognized as worthy, who is qualified to 'search for answers,' and who is human, by relying on the knowledge he has gained from his (familial) proximity to disability. However, as Michel Foucault (1988), demonstrates, questions of knowledge are also and always questions of power. Mechanisms of power are operating on and through Brown's articles — they were in print on the front page of a national newspaper for three weeks, are being published in book form by Random House in the summer of 2009, they are read by hundreds of thousands of people and are received with almost unanimous praise. By contrast, "Walker" the newspaper headline reminds us, "can't speak" [Brown 2007a, A1]. The kinds of stories that non-disability tells about 'living with' disability are never neutral. These stories, as relationally powerful stories, are always involved in the production and legitimization of conceptions of disability — conceptions that are always tied to the materiality of bodies. If to narrate 'living with' disability — to speak up, speak out, speak-on-behalf-of — is one crucial function of living with others, it is necessary to trace our speech along the lines of our (power) relations, to attend to the ways in which our words are producing and governing ourselves and others.

Emmanuel Levinas (1998) reminds us that coming to know the other is neither as straightforward nor as simple as Brown's articles seem to suggest. Insofar as I am always and already proximal to the other — exposed to her gaze, to his touch, to violence or respect — the autonomy of the I, Levinas posits, is fundamentally disrupted. Still, as I am touched by the other, as I am so close, so proximal as to be (re)formed in and through our relation, something still remains distant, inaccessible to me. Levinas reminds us that in our proximity, there is also and necessarily a distance; the other is entirely unassumable from the positionality of the I. He reminds us that the other is proximal to the I only as an excess that always exceeds my ability to fully know this other (91). It becomes critical to think through (again and again) the ways in which we are given over beyond the self, and where this excess of the other, and the other's relation to me, exceeds my ability to know it.

Judith Butler (2004) articulates this distance or excess that lies between you and I in terms of an essential "unknowingness" (28). She writes: "I cannot muster the 'we' except by finding the ways in which I am tied to 'you', by trying to translate but finding that my own language must break up and yield if I am to know you. You are what I gain through this disorientation and loss. This is how the human comes into being, again and again, as that which we have yet to know" (Butler 2004, 49). The I, Butler tells us, is both constituted and undone by the other. The 'we,' then, is revealed to be a tenuous and paradoxical union. In one way, the 'we' designates homogeneity - a unification of the same and different; the self-and-other. Still, this 'we' also demarcates heterogeneity. The self. The other. Wholly separate yet conditionally linked. The 'we' is a complex tie that both binds and keeps separate, the same tie that binds and separates disability and non-disability in Brown's narrative.

Because of this 'excess' or 'unknowingness' and because we are always embedded in relations of power, Butler argues that there is, therefore, no such thing as a detached or innocent narrator of relations. She writes: "[T]he very 'I' is called into question by its relation to the Other, a relation that does not precisely reduce me to speechlessness, but does, nevertheless, clutter my speech with signs of its undoing" (Butler 2004, 23). As I narrate the relational ways in which I am intimately close with and connected to the other, as I draw on a 'we' (as I do, and I must), my words are always bearing witness to this excess. I am marking the very impossibility of the task of narrating a 'we'. If to narrate is one way to render the relationship between the self and the other knowable, then to narrate is necessarily "to falter" (Butler 2004, 23), to be reminded of a looming and inaccessible "unknowability" (Butler 2004, 28).

In the ways Brown relates to disability (or Walker) as other, as he weaves together observations and knowledge claims as ways in which he has come to know this other, and as he attempts to speak the 'we' in certain terms, we might find opportunity to carefully look for the ways in which his narrative is coming undone. If, following Rod Michalko (1998), "looking and noticing is located within a social web of interests, purposes, hopes, fears, anxieties and so on," (40) how is Brown's 'look' being directed and what kinds of things are being noticed and described?

My critique — itself a narrative like Brown's own narrative — is also grounded in uncertainty. I do not know what it is like for Brown, a parent of a child with cognitive disabilities in a social context that is unwelcoming and even hostile to this child's mere presence. I do not know what its like for Brown to spend night after night without sleep, feeling helpless as he watches his child in pain. I do not know what its like to feel that the only alternative is to place an eleven-year-old boy in a group home. I do not know. However, amidst all of this unknowing, Brown's articles are doing. Pulling at the threads of our knowledge claims about our lives with others is to first acknowledge that they are workings and then to attempt to decipher how they are accomplishing the work that they are doing. From these analytic processes, we can develop a position from which to look and notice — to 'live with' one another — differently. I now turn to a close examination of Brown's articles written about his son, Walker.

"My compromised son…": Disability and brokenness

One interpretive move Brown makes can be noted as he introduces his son as some-body that has deviated from a 'natural' (and even 'moral') state of wholeness. Brown states that Walker is 'broken' (Brown 2007a, A1). In the first article, we are introduced to Walker through an analogy. Brown writes: "[I] wake up to a steady, motorized noise. Something is wrong with the water heater. Nnngah. Pause. Nnngah. Nnngah. But it is not the water heater. It's my boy…" (Brown 2007a, F1). Something is off; something is making noise when noise ought not to be made. Something is out of order (and it is not the water heater). "It is my boy", Brown reminds us. Brown wakes up to an anomaly, he notices a noise that is not an expected noise. However, something occurs at this moment in Brown's narrative — seamlessly, Brown moves from noticing the unexpected to recognizing it as a sign of something wrong, something broken.

Brown identifies his son's status as 'broken' in several different ways. Time and again, Brown writes that Walker is "broken", "off", "flawed", "unnatural", a "typo", the "compromised son", a "snaggle" of a life, the product of a "genetic misfire", the "human consequence" of an "affliction," a "deleterious effect," an "unsuccessful random human mutation" and so on (Brown 2007, F1-F8). The seemingly insignificant move of linking anomaly with something being broken marks an act of erasure accomplished by Brown wherein his own complicity as a socially located interpreter of anomaly — as meaning maker — is forgotten. Thus, the move from difference to brokenness appears as if natural. And Brown's story of disability unfolds out of this assumption.

"…nothing else to be": Disability, hopelessness and non-possibility

If Walker is conceived of as 'broken', then the need to 'fix' him seems intuitively understood. In this way, hope and, with it, possibility become contingent on solving the 'problem of disability', on making 'right' what is already conceived of as 'wrong'. The series of articles charts Brown's progressive movement away from interpreting his son's life as hopeful and full of possibility to, upon his son's failure to conform to a normative embodiment, narrating Walker's life as being absent of hope, without possibility.

Early in the series of articles, Brown describes a brief period of hopefulness upon being told of Walker's diagnosis. He tells the following story of the day an infant Walker was diagnosed:

Walker had cardio-facio-cutaneous syndrome. He was eight months old. That would qualify as an early CFC diagnosis even today.
'Now that we know what's wrong, we'll know what to put right,' my wife said touchingly. She believed in medicine.
[The geneticist] was even upbeat. "His developmental milestones are being achieved at a rate that was well within the normal range," he wrote in a confirming letter after meeting Walker (Brown 2007a, F5).

Brown describes taking Walker to behavioural therapies, physical therapies, oral therapies and so on. To teach Walker to walk (to "do what his name said he was"), they took him to a "costly and radical" therapy three times a week for two years that entailed "hanging him upside down and pulling his legs into unnatural positions" (Brown 2007a, F6). Brown writes: "He started screaming the moment we pulled into the driveway, but he learned to walk. At least he had that" (Brown 2007a, F6).

Later in his narrative, Brown recounts taking a two-year-old Walker to meet with a developmental specialist. He describes the specialist's assessment: "if Walker continues at his present rate of development, then he might be diagnosed with moderate mental retardation as an adult" (Brown 2007, F7). Brown then moves on to describe he and his wife's reactions:

"Moderate?" Johanna says, and puts her hand to her mouth. She is already crying. (I hope I held her hand.) "I was hoping for mild. Will he ever be able to read? Or drive a car?"
"I doubt it."
This is bad news. Moderate retardation is still catastrophic, and there is nothing to say it won't get worse as he gets older. He will need lifelong supervision, support in his living arrangements (Brown 2007a, F7).

I would like to contrast the above story with Brown's earlier description of the day he and his wife first learned of their son's diagnosis, in order to reveal how hope is narrated in relation to the cognitively disabled life. When Walker is first diagnosed, Brown describes a sense of hopefulness — it was an "early diagnosis," "milestones" were being "achieved," the infant was still "within the normal range." However, the only hope that is spoken about or attributed to the cognitively disabled life is the hope that it will overcome its cognitive disability. This point is underscored in Brown's latter account of his son's assessment as "moderately retarded," where this sense of hopefulness is replaced with a sense of despair or 'catastrophe' — Walker may never be 'able to read', he may never 'drive a car,' 'there is nothing to say it won't get worse' and so on.

In Brown's articles, hope is made contingent upon Walker's 'return' to an 'unbroken' (or at least a less 'broken') state. Hope and, with it, possibility, therefore become tied to non-disability. Cognitive disability as cognitive disability — and not as, say, disability on the way to non-disability — is conceived of as a life without possibility. If disability resists being fixed or cannot be solved, if the disabled life does not, cannot or chooses not to conform to a normative notion of what 'human' looks like or acts like or thinks like, it finds itself oppositionally bound to non-possibility.

One example of how disability's non-possibility is textually enacted can be observed as Brown tells the story of a photograph he has of his daughter Hayley reading a book to Walker. Brown describes the photo as follows:

They are lying side by side on a bed, and Walker is looking up at the book in Hayley's hands, as if riveted by every word. I'll never know if he understood a syllable. But he can hear her voice. Is thrilled to be with her and clearly grasps his smart big sister's affection. He has become the moment and it has become him, because he has nothing else to be. (Brown 2007a, F8)

Brown describes the photo mostly in certain terms. For example: "[Walker] is thrilled to be with [Hayley]" He is thrilled. This statement, uttered in certainty, is nonetheless Brown's assumption about his son's look. He sees Walker in the photo smiling and assumes that he is thrilled to be with his ("smart") sister. This interpretation seems reasonable enough. Yet, that "Walker is looking up at the book in Hayley's hands, as if riveted by every word" suggests that Walker, rather than being riveted by every word, only appears ("as if") he is.

The child is looking directly at a book and smiling; how does it become reasonable that he is thrilled by being read to but only looks as if riveted by the book itself? As I observe the other, I am always interpreting and attributing meaning as if I have full access to knowledge about the other. Yet, in Brown's description of the photo, these two words — 'as if' — are not drawn upon in an attempt to make transparent the author's location as an uncertain interpreter of the situation. Rather, these words, in this context, are enlisted for the functional purpose of highlighting Walker's perceived lack of agency. Agency cannot be attributed to a body that is already understood as being without possibility, a body that, apart from being carried along from moment to moment, has "nothing else to be".

The disorientation of loss

With "nothing else to be," Walker's life — the life of cognitive disability — is subsequently understood as "lost." After bringing Walker home from the doctor's one day, Brown quotes his wife as saying: "my little boy is gone" (Brown 2007a, F8). Walker is at home with her as she makes this statement. We have explored some of the conditions of possibility that allow such a statement to appear intelligible — we might have a sense of what Brown means when he repeats that he's lost his son even though his son remains physically alive. Narrated as broken, without possibility or future, the life of cognitive disability is conceived of as an unlivable life, and can thus be articulated as "lost." Elsewhere, Brown reflects on a living Walker's life in the past tense. He writes: "I decided to look again at the life he had lived and the way we had helped him live it — first at home, later in a special community for children like him" (Brown 2007a, F4 my emphasis). Insofar as Brown's articles endeavor to 'look back on' a life "lost," the articles might, in a sense, be read as an obituary.

It is necessary now to re-frame Brown's depiction of his son and of disability. Judith Butler's (2004) book Precarious life: The powers of mourning and violence, will be helpful in this endeavor. One way to glimpse the radical sociality of how I am tied to you is through an examination of loss: how we mourn. Butler grapples with the power and politics of grief and mourning and probes how these are engaged in governing a collective humanness, or a 'we'. "Loss" she writes, "has made a tenuous 'we' of us all" (Butler 2004, 20). We have all lost and are constituted by a vulnerability to loss. Vulnerability to loss and loss itself bear witness to a fundamental sociality of embodied life — loss demarcates my tie to the other. Butler writes:

It is not as if an 'I' exists independently over here and then simply loses a 'you' over there, especially if the attachment to 'you' is part of what composes who 'I' am. If I lose you under these conditions, then I not only mourn the loss, but I become inscrutable to myself. Who 'am' I, without you? (Butler 2004, 22).

Mourning is disorienting: with the other gone, I must question what this loss of the other is. What of the other is now gone from me? How have I changed? Loss marks a destabilization of my autonomy, the boundedness of the I is no longer secure, no longer certain.

Given the disorder and the disorientation of loss, we are faced with a seductive temptation to quickly return to the former state of order; to "look for answers," to find 'worth,' to uncover familiarity, to give order to the (a) disorder. Butler reminds us, however, that when we undergo processes of mourning "something about who we are is revealed, something that delineates the ties we have to others, that shows us that these ties constitute what we are, ties or bonds that compose us" (Butler 2004, 22). Mourning reminds me that I am, in part, constituted by my relationship to and with otherness. I am not simply in my body and you in yours, and when you appear to me, when I encounter you, difference is negotiated and organized. Rather, I come into my body in relation to you — differentiation happens by way of and through our encounters with difference. In this way, Butler is suggesting that mourning represents an opportunity to contemplate and struggle with the ties that bind us together and, simultaneously, keep us separate. The disorder and disorientation of mourning is one occasion when we might reflect on how difference is being negotiated and organized — how we are 'living with' otherness.

The politics of mourning

Butler argues that mourning is not simply a 'natural response', but also a political act. Certain human lives are understood to be more grievable than others. Lingering with the phenomenon of mourning as a space that might teach us to struggle with our humanness, Butler draws on the usage of the obituary to ask the questions: "Who counts as human? Whose lives count as lives? And, finally, what makes for a grievable life?" (Butler 2004, 20).

Butler tells us that when a life is made 'unlivable,' public acts of grieving are inconceivable. In the obituary, Butler reminds us, "lives are quickly tidied up and summarized, humanized, usually married, or on the way to be, heterosexual, happy, monogamous" (Butler 2004, 32). In this way, the obituary is a means of publicly allotting grieveability — it is an instrument of recognition involved in reminding us which lives count as lives (and, therefore, which do not).

The public obituary both constrains and produces the compulsory human subject — who the human subject must be. This compulsory human subject, as Robert McRuer (2006) and others have gestured toward, is not simply male or white, or ablebodied, or middle classed or heterosexual. Rather, in order to secure his humanness, this subject must perform, and perform again, maleness, whiteness, middle-classness, heterosexuality, and non-disability. Any-body who 'deviates' from this compulsory human morphology is subject to either re-imagination or exclusion from being publicly remembered.

As Butler points out, newspaper obituaries memorializing queer victims of 9-11 either re-imagined (posthumously 'rehabilitated', perhaps) these lives as straight or omitted any mention of their queerness. This exclusion from public memory is demonstrated in Butler's example of the San Francisco Chronicle's refusal to publish obituaries marking the deaths of two Palestinian families killed by Israeli troops (Butler 2004, 35). Butler claims that there can be no obituary for such bodies, for they are the 'unreal' lives — already outside of, beyond, the limitations of how the human is imagined to be. By way of various discursive strategies, Palestinian lives were/are already being created by the US (and Canadian) media as non-viable lives. Because these bodies were already fashioned in the absolute negative, Butler argues, they could not be killed and therefore could not be collectively remembered in the obituary. In other words, the life that is unrecognizable, or recognized only as unlivable, is also and therefore ungrievable. Moreover, because a body is rendered unlivable, it is made more vulnerable, more exposed to the possibility of violence.

Mourning the figure of the stillborn

In many ways, Brown's articles depict his son as precisely the nonviable life to which Butler refers. Yet, unlike Butler's examples where one product of a radical dehumanization is an equally productive "silence of the newspapers" (Butler 2004, 36), Brown's mourning happens on the front page. Reading along with Butler, if Walker's life has been made non-viable, than it must also be ungrievable. Still, it is clear that something/someone is being mourned in the Globe and Mail. In and through his articles, Brown seems to be addressing Walker as he says "…my sweet, sweet lost and broken boy" (Brown 2007a, A1). Yet, given that Walker is not lost, he is neither dead nor absent, who is this boy Brown is addressing? What, then is being mourned in these articles?

Cognitive disability is characterized in Brown's articles as "hopelessly broken" (Brown 2007c, F7), but broken in relation to what? To narrate a body as 'broken' is to already understand that an originary body is lost, either temporarily or permanently. Brown's narrative of his 'lost and broken boy', this boy who was born broken, calls up the image of the unbroken child; the expected child. The story of this 'expected child' begins before birth during that time of expectation, when parents are told that they are expecting and, who (consider the 'bestselling pregnancy book of all time,' What to Expect When You Are Expecting).

The newspaper birth announcement, like the obituary, announces something more than simply who happens to be born and to whom (Titchkosky, 2007). Weaving together cultural assumptions about the desirable body and the viable life, the birth announcement restricts who must be born. Birth announcements serve as acts of welcoming. Most commonly, we read: "It's a girl!", "It's a boy!", "healthy!", "happy!" and so on. These announcements, however, remain silent with the arrival of the intersex child, the cognitively disabled child — the child who is unimagined, unexpected and whose arrival, subsequently, goes unwelcomed. In this way, the image of the expected child has come to be shaped and infused with dominant and even compulsory hopes and anticipations. The possibilities of who might be expected, and who might be welcomed as a viable life, are restricted.

In the case of Brown, this expected child was never born at all. In an article in the Autism Network International newsletter, "Don't Mourn for Us," Jim Sinclair (1993) compares the loss of a parent's expectations with the birth of a stillborn child. The stillborn — not as an absent child but as a very present figure — seems to animate Brown's observations and interpretations and haunts the life of disability throughout Brown's narrative.

The child Brown mourns for is precisely the figure of the stillborn, the affirmation of the negated life of disability. In this way, Brown's articles do not mourn disability, they mourn because of it. Brown's articles describe "a boy of [his] dreams," an "ordinary" son; an expected son, who can "talk like a trial lawyer", "throw a ball," "be an ordinary kid who [gets] C's in school". This figure has a girlfriend, will get married, says: "Ma, I love you" and "Fuck you Dad!" (Brown 2007, F1-F8). The figure of the stillborn is replete with possibility, and is thus mournable, because he fits the contours of the imagined shape of the compulsory human subject — he performs his whiteness, maleness, middle classness, heterosexuality and his non-disability.

Yet, vis-à-vis the life of disability, the stillborn — this valued and viable figure of non-disability — is necessarily rendered still…but not entirely absent. In relation to the birth of disability, the figure of non-disability may be born still. However, this figure is born, still. The figure of the stillborn (who is always and already linked with death and loss) is made to be so proximal as to be (almost) grafted onto the life of disability. The conflation of Brown's loss (i.e. his expectations) and his son's life enacts the life of disability as 'not quite a life' (Butler 2004, 34) or even, to borrow from Michalko, as "already dead" (Michalko 2002, 110).

At the close of the third and final part of Brown's series, a distinct shift can be observed in how Brown narrates his relationship with his son and, perhaps it can be argued that he has recognized this figure of the stillborn, noticed how this shadowy figure haunts his relationship with disability. As his series comes to a close, Brown returns to his search for "answers about the worth of handicapped lives" (Brown 2007c, F1). What is more, in this third and final part of the series, Brown claims to have found these answers. He states that he has uncovered the 'worth' of the cognitively (what he refers to as 'severely') disabled life. Moreover, he claims this ('broken') presence is "essential to the world" (Brown 2007c, F1). Yet, even as Brown 'grants' the disabled life its value, cognitive disability is still being enacted as 'not quite a life'.

Brown writes: "the more I struggle with my limitations as a father, the less I want to trade him" (Brown 2007c, F8). He continues: "I have begun simply to love him as he is, because I've discovered I can" (Brown 2007c, F8). Yet, despite this notable change in the way Brown narrates life with disability, and even as he explicitly and crucially states the importance of 'accepting' disability as disability, his narrative works to reinforce non-disability as the only viable way of being in the world. After all, Brown tells us, as does his culture, that he has to develop an ability to love disability. Disability can be loved, Brown tells us, but loving disability is not 'natural' — 'we' have to learn to love it. What are the risks in narrating this moment of self 'discovery'? And, how is the self being constituted in relation to otherness?

Paraphrasing philosopher Jean Vanier, Brown claims that "Every time we meet someone who is severely handicapped… …they ask a question: Do you consider me human? Do you love me? Our answers define not only who we are but how human we want to be" (Brown 2007c, F8, my emphasis). It is critical, however, to question: who is this 'we' to which Brown is referring? Certainly 'severe' disability is still imagined out of this 'we'. What is more: who is permitted to ask the question 'how human do I want to be?' and who is left with a questioned and questionable humanity? The non-disabled life is confirmed as the only possible life — a life so full of possibility it can choose how human it wants to be. And, this choice, this act of confirmation is only made possible if the humanness of the 'severely' disabled life is understood as uncertain. Conceiving of the 'severely disabled' life as 'perhaps not human' makes it possible and, seemingly, reasonable for a well respected national newspaper to publish a close-up photograph of the face of a cognitively disabled child, next to the large bold print question: "Am I human?" (Brown 2007c, A1).

Disability is articulated in the final part of Brown's narrative as "valued" and "essential". However, cognitive disability is understood as valuable in Brown's narrative only insofar as it confirms non-disability's dominant status; only insofar as it allows non-disability to recognize or 'discover' itself as human. 'The difference that disability makes' (Michalko 2002) is effaced; it becomes totalized under a rubric of non-disability. The tie that binds me to you, and that also and necessarily preserves and maintains our difference, is not attended to. Thus, the cognitively disabled life — in and of itself — is narrated as non-valuable and even non-viable.

Vulnerability and violence

Butler argues that by attending to processes of mourning as political, we might also glean how and in what ways some lives are made more vulnerable to violence than others. She warns that: "[negated lives] cannot be mourned because they are always, already lost.. …and they must be killed, since they seem to live on, stubbornly, in this state of deadness" (Butler 2004, 33). Her point is underscored in Brown's articles as conceptualizations of disability as brokenness and absolute negativity are brought together under a rubric of economy — disability is narrated using language like 'worth' and 'cost'. Brown asks: "What is the value of a life like his — a life lived in the twilight, and often in pain? What is the cost of his life to those around him?" (Brown 2007a, F4). Indeed, he goes on to offer many examples of the 'cost' of disability, from actual figures: "we spend a million dollars to save them" (Brown 2007a, F4), to lived costs: "the havoc [Walker] has caused in our lives, threatening our marriage and our finances and our sanity" (Brown 2007a, F4).

Making reference to Tracy Latimer, the 12-year-old Saskatchewan girl with Cerebral Palsy who was murdered by her father, Robert Latimer1 , Brown writes:

There is no excuse for murder. But there have been nights, after hours of trying to stop Walker from smashing his head, when I imagined I understood Mr. Latimer's desperate reasoning. Medicine had kept his daughter alive, but 90 per cent of her life was agony. How much of [Tracy's] parents lives had been shaved away, witnessing that pain? If you added the losses up, it wasn't long before the equivalent of several healthy lives were draining away to mind one hopelessly broken girl. Latimer cut his family's losses and put Tracy out of her pain. So I explained it to myself. It was murder, illegal and unconscionable. But the logic was no more pathological than a crop rotation. (Brown 2007c, F6)

The relationship between disability and non-disability appears in Brown's articles as a simple binary, without complexity or nuance. Non-disability is hope where disability is hopelessness. Non-disability is wholeness, where disability is brokenness; Non-disability is life, where disability is 'not quite a life,' or mostly death. What is more, as non-disability is understood to be life and disability mostly death, the non-disabled life 'living with' disability is re-framed as a life tied to death — "several healthy lives were draining away to mind one hopelessly broken girl". This 'rationality of opposites' (Michalko 2004, 108), makes it possible to move toward a consideration of violence against disabled bodies.

Michalko (2002) traces a similar 'rationality of opposites' through the Latimer court case. In the transcript of her testimony at her husband's trial, Laura Latimer, Tracy's mother, states: "Tracy's, her birth, was way, way sadder than her death…we lost Tracy when she was born and…that's when I grieved for her…i did all my grieving when she was little. We lost her then" (Quoted in Michalko, 2002, 105-106). Michalko argues, "the loss of normalcy and personhood — the loss of Tracy — occurred at her birth and her actual death was inevitable and anticlimactic. Robert Latimer killed his already dead daughter" (Michalko 2002, 110).

I am not suggesting that Brown condones the action of Robert Latimer. After all, Brown does say that there is "no excuse for murder". Moreover, it is not my intention to ignore or efface the anguish, the grief, the helplessness and love Brown is expressing as he shares a story of witnessing his son hurt himself for hours on end. However, amidst anguish, grief, helplessness, and love, it is necessary to consider the political risks inherent in, following Michalko (2002), "suffer[ing] the suffering of another"; to attend to the ways in which my suffering is related to and, still, is separate from your suffering. My point is to underscore the necessity of remaining vigilant to how common, everyday stories of the cognitively disabled life as broken and unfixable, hopeless and without possibility produce a kind of "reasoning" that make it possible and even, in Brown's words, "logical" to move to violence.2

Re-conceiving the 'we'

The forces that govern what the 'human' looks like extend far beyond the example of Ian Brown's three articles. The systemic processes that work to dehumanize disabled bodies are deeply entrenched in our social context and work on as much as through Brown's narrative. Families with disabled members are subject to and governed by ableist social processes and systems of oppression and, as such, are marginalized. Still, in her chapter, "From pity to respect: The ableist gaze and the politics of rescue," Sherene Razack cautions that identifying ourselves as marginalized often allows us "to avoid addressing our position within dominant groups and to maintain our innocence or belief in our non-involvement in the subordination of others" (Razack 1998, 132). Following Razack's assertion, it is critical to consider how non-disabled family members, hierarchically privileged in this regard, are always at risk of sustaining and reproducing systems of ableism and oppressive processes of normalization. While Brown did not invent this kind of ableist framing, his articles do participate in its reproduction.

As a way to begin the task of thinking through what it means to speak the 'we' — to tell the story of our lives with others, I would like to return to Brown's mourning of his 'lost' boy. Brown's narrative seeks a quick end to his grief by way of a quick return to the familiarity of the same — to return his boy to a state of non-disability, to return his life to a state of without disability. In doing so, Brown's articles miss an opportunity to attend to how the 'we' — how disability and non-disability — is being constituted in these moments of grief. So, I would like to finally stay with the grief expressed by Brown, struggle with it as Butler suggests, and resist the seduction of a quick return to order. Butler states that the disorientation of grief provokes us into a state of questioning the self and the self's relation to the (lost) other. Grief is disorienting, it leaves me uncertain of who I am without you, or without the you I expected. Rather than an end point, I believe this place of uncertainty is a rich place to begin to theorize the tie that links together disability and non-disability.

To 'live with' the other, to speak the 'we,' is always to be at risk of relating to the other violently. However, this risky space may also be an opportunity to re-enter the story that 'we' are telling and to tell it differently. In the face of otherness, instead of asking (and answering) questions like, 'Do I consider you human?,' we might ask, following Hannah Arendt (1958), "Who are you?" (178). The other's response to this latter question can never be fully known in advance and can never be finally known, once and for all. As we turn to the other and ask, "who are you?," we are also, and inevitably, asking the question, 'who are 'we'?'. It is vital, then, to stay with and 'live with' the uncertainties and disorientations that result from approaching living with disability as a question to which there is no single or simple answer and a question that must be returned to and theorized again and again.

Works Cited

  • Arendt, Hannah. 1958. The human condition. Chicago: University of Chicago Press.
  • Brown, Ian. 2007a. "Part 1: The unexpected son." The Globe and Mail, December 1 2007, Focus Section.
  • Brown, Ian. 2007b. "Part 2: Finding Walker's place." The Globe and Mail, December 8 2007, Focus Section.
  • Brown, Ian. 2007c. "Part 3: Walker, my teacher." The Globe and Mail, December 15 2007, Focus Section.
  • Butler, Judith. 2003. Bodies that matter. New York: Routledge.
  • Butler, Judith. 2004. Precarious life: The powers of mourning and violence. New York: Verso.
  • Butler, Judith. 2005. Giving an account of oneself. New York: Fordham University Press.
  • Chandler, Eliza. 2009. "Pride and shame: Toward a temporality of disability pride" paper presented at the Society for Disability Studies Conference 2009 in Tucson, AZ.
  • Foucault, Michel. 1988. The history of sexuality. New York: Vintage Books.
  • Globe and Mail. 2007. Latimer should be granted clemency. December 8. A28.
  • Globe and Mail. 2007. Letter to the editor. December 10. A20.
  • Levinas, Emmanuel. 1998. Entre-nous: on-thinking-of-the-other. New York: Columbia University Press.
  • McRuer, R. 2006. Crip theory: Cultural signs of queerness and disability. New York: NYU Press.
  • Michalko, R. 1998. The mystery of the eye and the shadow of blindness. Toronto: University of Toronto Press.
  • Michalko, R. 2002. The Difference that Disability Makes. Philadelphia: Temple University Press. 2002.
  • Razack, Sherene. 1998. "From pity to respect: The ableist gaze and the politics of rescue," from Looking white people in the eye: Gender, race and culture in courtrooms and classrooms. Toronto: University of Toronto Press. 1998.
  • Sinclair Jim. 1993. "Don't mourn for US." Our Voice. 1(3).
  • Titchkosky, Tanya. 2007. Reading and writing disability differently: The textured life of embodiment. Toronto: University of Toronto Press.

Endnotes

  1. Robert Latimer was convicted of the second-degree murder of his 12-year-old daughter, Tracy, who had cerebral palsy (R v. Latimer 1997, 2001). According to her parents and physicians, Tracy experienced severe physical pain. Robert Latimer, unable to witness Tracy's pain, poisoned her with carbon monoxide. In the ensuring court cases, Latimer's attorneys used a defense of necessity, which sparked a national debate on the ethics of (what was described by many as) 'mercy killing'. For a more detailed analysis of this case, see Rod Michalko (2002) "Coming face-to-face with suffering" in his book The difference that disability makes and Ruth Enns' (1999) book A voice unheard: The Latimer case and people with disabilities.


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  2. On December 8th, 2007 — the same day the second part of Brown's series was spread across the front page — the Globe and Mail's lead editorial advocated for the reversal of Robert Latimer's recent parole decision, in which Latimer was denied parole. The editorial frames the murder of Tracy Latimer as "killing out of compassion" and calls for the federal government to reverse the parole decision in order to "spare Mr. Latimer any more agony" (The Globe and Mail 8 Dec. 2007, A28). In a letter to the editor the following day, one commenter noted the seeming contradiction in publishing Brown's story and the Latimer editorial in the same paper (The Globe and Mail 10 Dec. 2007, A20). However, I feel that it is, neither a contradiction nor a coincidence that Brown's articles are able to appear alongside this appeal for Latimer to be granted clemency, for both articles rely on and produce notions that the 'severely' disabled life is a broken and an 'agonizing' life, and a life that may or may not be 'worth' living.


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