Abstract

What does it mean to be the parent of a disabled child? This article explores assumptions which permeate the author's encounter with a prominent Canadian newspaper text on "stress". Through a hermeneutic phenomenological method, the author opens up broader cultural meanings that contribute to and rely upon the category of "parents of disabled children". In particular, the author explores prescriptive interpretations of disability, race, class, gender, nationality, and sexuality which emerge in the reading process. Additionally, the author examines the historical grounding of such interpretive moves and considers how medico-scientific authority is asserted in this textual encounter.

Introduction

What does it mean to be the parent of a disabled child? This is a question that I have asked and been asked in many different contexts: in my professional life as a clinical social worker, in my personal life as a parent of two children (one who has received a particular diagnosis), and in my scholarly life as a social work researcher. Others have asked similar questions using many approaches, including personal narratives (e.g. Bertelli, Silverman & Talbot, 2009; Brown, 2009), qualitative feminist and/or anti-colonial investigations (e.g. Landsman, 2005; Traustadottir, 1991; Bumiller, 2009; Salmon, 2004), historical analyses (e.g. Ordover, 2003; Snyder & Mitchell, 2006) and quantitative health research studies (e.g. Gupta, 2007; Risdal & Singer, 2004). Not surprisingly, the ways that the question is posed, and the information that is taken as evidence, substantially affect the answers that emerge.

For a hermeneutic phenomenological investigation, the researcher starts by assuming that the ability to ask this question is, itself, part of the data. How is 'parent of a disabled child' an available meaning to seek? I already must know something about the category before writing that first sentence. As summarized by Tanya Titchkosky:

A hermeneutic way of knowing or science of understanding our interpretations of interpretations, requires the inquirer to begin from the assumption that we are all enmeshed in multiple and conflicting webs of interpretation. (2007, p. 102)

In this article, I follow this interpretive methodological tradition to use my own reading experience as data, looking not only at what is in the text, but what the text calls upon me, as the reader, to supply (Titchkosky, 2007; Laverty, 2003). I follow theoretical traditions which view texts as materials which coordinate social acts, bridging local contexts through the combined efforts of writers and readers, influenced by taken-for-granted discourses (Smith, 2005). In Maurice Merleau-Ponty's words, the world "is where the paths of my various experiences intersect, and also where my own and other people's intersect and engage each other like gears" (1958 [1945], p. xxii). Thus, I see meaning as something writers and readers produce together, are "co-responsible" for, and reproduce themselves though, rather than something that can be distilled from authorial intent (Weiss, 2008).

In this article I focus my attention on reading a single text, allowing me to examine apparently small details as a means to grasp much larger threads of the cultural whole. Such an approach directly contradicts the concept of representative sampling; instead of showing that the focus of my analysis is 'typical', I examine its particularities and my own individual responses as a means to examine assumptions and beliefs which are 'available' to the writer, the editor(s), and me, as reader. Of course other readers, other writers or editors, and even other readings would differ; such an approach posits that shared assumptions can nevertheless be usefully explored.

The selected text that I analyze actually represents the category 'parents of disabled children' in an apparently cursory and indirect way, and might not initially appear to be about my starting topic at all. However, I argue here that the piecemeal and glancing nature of this text's references to "parents of disabled children" can only make sense to me if other assumptions and associations are particularly robust. Larger constructs such as disability, reproduction, productivity, and gender are rooted in the text's rhetorical moves, in the dance between the stated and the unstated, embedded in what the reader is asked to 'know already'. I ask, how is the category 'parents of disabled children' made comprehensible as something to investigate in reading this text? Who is a parent anyway, and what meaning is given to disability and children in this framing of parenthood? What is reproduced in and through disability and parenthood? In other words, what social knowledge is embedded in both asking this question and answering it, as offered through a reading of this particular text?

In structuring this analysis, I use a fundamental premise from Disability Studies, that disability is "another culture-bound, physically justified difference to consider" (Garland-Thomson, 2009, p. 63). Thus, rather than assuming that disability has an objective, easily-identifiable existence, I proceed from the starting point that the way that disability is discussed reveals something about the world surrounding and permeating such discussion (Titchkosky, 2009). Further, drawing inspiration from feminist and queer theories, among others, I trouble assumptions regarding parents and children. I assume that, far from being objective, questions of who is a parent, what parenting means, what a good or proper parent looks like, and what a disabled child means for/to parents, intertwine with multiple gendered, sexualized, racialized, class-based, and otherwise politicized hierarchies (e.g. Rich, 1986 [1976]; Bumiller, 2009; Butler, 2004; Collins, 2000; Hill, 2008; Weston, 1991; Epstein, 2009). In such an analysis, I hope to demonstrate ways in which these various theoretical frameworks can be brought together to examine a text, constructing a multiply determined understanding of "parents of disabled children". As I hope this paper will make clear, an exploration of how this text 'does disability' will blur into considerations of how it does gender, does class, does sexuality, does nationality, and does race.

Stressful encounters: Image, text, context

The two-page newspaper spread in front of me is very busy with texts and images. The article, entitled simply "Stress", was written by Siri Agrell and published by The Globe and Mail, a, daily, nationally distributed Canadian newspaper, on Saturday, October 30, 2010. It appears in the two-page centre-fold of the first section of the weekend paper (on pages A 14-15), a very high-profile location in a newspaper, reserved for articles that anticipate or court a large readership. This article appears as part of a multi-issue, heavily advertised series under the larger title, "Canada: Our time to lead", with this particular installment of articles under the heading, "Work-Life Balance". There is a subtitle to this heading which reads, "Health: Our busy life is making you sick". The "Stress" title is actually repeated in capitals all across the top of the two-page article, interrupted only by the image of a see-through line-drawing of a head with brain visible. The large-print introduction to the main article then reads:

It hurts body and mind. It costs employers and health-care billions every year. Most of us play down the impact of our overstuffed, imbalanced lives, but as Siri Agrell reports, scientists say it's time to get serious about stress.

The article is accompanied by several photos printed in color: a man, identified as a PhD student researcher, spitting into a test tube; the same man watching two women through "a two-way mirror", at a table covered by knobs and a video screen showing the women, who are not identified; and a woman, standing in front of a painting and smiling at the camera, who is identified as the director of a hospital Centre for Studies on Human Stress.

The largest image on the page, however, is the diagram of a see-through human body, its head and brain interrupting the repeating "STRESS" title at the top of the page. The outline is sketched in grey lines with different "systems" of internal organs represented in bright colors; lines connect each illustrated system to text to the side with a color-coded title (e.g. the orange-red title "Circulatory system" is connected by a black line to orange and red lungs and heart). This anatomical image takes up the entire vertical space of the page, just to the right of the central fold, from immediately below "The Globe and Mail" at the top, to the advertisement for an American car at the bottom. The rest of the photos and text are arrayed around this central image.

I know that the anatomical image is of a see-through woman, since one of the things I can see is her purple reproductive system. In case I continue to be unsure about the gender of this drawing, she is wearing a skirt and high heels. Indeed, her attire seems to indicate 'women's office wear', with a blazer and just-above-the-knee skirt and pumps. Her right arm appears to be raised to her temple (brain) and her eyes are closed, the edges of her mouth pointing down, as if to indicate a headache, all beside the title of the caption/text box: "The Pain of the Strain". The image and text suggest a prominent association: "Stress" has something to do with the bodies of women who work in offices, and who are in pain.

The caption's title, "The Pain of the Strain" is followed by a statement in bold print that precedes the organ/system headings and paragraphs:

The Japanese call it Karoshi: death by overwork. A growing body of research shows that stress has a direct impact on our health, affecting everything from cholesterol levels and the likelihood of developing diabetes to obesity and sexual dysfunction. In fact, chronic stress can change the body on a cellular level, modifying our brains, our chromosomes and even how babies develop in utero.

What am I supposed to make of this text and the images that follow? This opening statement combines with the banner subheading ("Our busy life is making you sick") to indicate the problem, whatever it entails, as national, transnational, and about "our life" and "you" or me, as reader. The reader learns that "the Japanese" have a term that recognizes the problem that "most of us play down", with the implication that "we" are not Japanese, but Canadian. The larger series title, "Canada: Our Time to Lead", also instructs me to assume that whatever problems are discussed have a direct effect on "our leadership" as a nation. I am to presume that "we" are trying to "lead" as a nation, in direct competition with other nations. The article on stress, thus, addresses the reader (you/me) as a concerned citizen (one of us), learning what "we" can do about "our busy life" to benefit our nation. Thus, while "overwork" may be transnational, how "we" respond says something about "Canada", and may be part what distinguishes "Canadians" from "Japanese". (Is it coincidental that the car advertised on this page is not Japanese?)

In this excerpt, which functions as a reader's guide to the overall meaning of the image and the caption texts that follow, disability is not explicitly mentioned. But here I learn that the stakes of "change…modifying" parts of "the body" (as documented by that other "growing body" of research) are clearly high, and have something to do with "overwork". Stress in this framing is something that acts on "the body", but is not of "the body". Disability may be seen lurking, as the unstated signifier depicted by the changeable, fallible, mortal body under stress. In the cultural context that the text and I share, I (we) already know that "people with disabilities and people with dangerous or incurable illnesses symbolize, among other things, imperfection, failure to control the body, and everyone's vulnerability to weakness, pain, and death" (Wendell, 1996, p. 60). Likewise, while parents are not explicitly mentioned, gender, sexuality, and genetic transmission are implied in "sexual dysfunction" and "chromosomes". "Babies" and "in utero" indicate that women's bodies may be present, and that parents may also be making an appearance. Pain, ill health, and changeable bodies are now stalking gender, sexual function, chromosomes/ genetic transmission, women's bodies, and babies. We must read on to find out how.

To explain what this schematic body has to do with stress, the sidebar text then itemizes each biological "system", from the top of the drawing to the bottom, head to foot: "nervous system/brain", "circulatory system", "digestive system", "reproductive system", "skeletal system", and "subsystem". Under each systemic heading, more text lists the types of disease, damage, and distress which stress enacts on the related body parts. I am clearly expected to understand something about biomedical research and its views of the body; moreover, I am expected to accept it as the dominant, if not the only, way of defining both "stress" and "the body".1 How does the text perform this assertion of biomedical authority? This process happens largely through what the text does not explain. I am, for example, expected to know of the existence of bodily "systems" that are so discrete as to each have their own color. I am expected to accept that a "body" or even a "person" is the composite total of so many separate "parts", merely the line drawing around the colorful core. None of the organs in the drawing are labeled; although few readers really see these organs in their everyday lives, there is an assumption that medico-scientific imagery is sufficiently dominant to require no explanation. I am also asked to accept that bodies are/should be uniform, such that "the body" and its organs can be represented in a single image.

Moreover, I am expected to view variations in bodies and bodily systems as signs of their fallibility, under a lens of "pain" and "death by overwork". When I read that "chronic stress" can enact bodily "change", I immediately understand this result to be unambiguously negative, and possibly deadly. As I read on, each system is identified and summarized in terms of the ways that "stress" causes it "pain" and "dysfunction". For example, under "Circulatory system" is a list of ailments:

Stress hormones also cause plaque buildup, clogging the arteries. Restricted blood flow increases the likelihood of a heart attack. As well, because the body needs cholesterol to produce cortisol, a chronically stressed system will boost cholesterol levels, which have health risks of their own…

Each of these ailments would be detectible primarily through medical testing. I only know about my "cholesterol levels", for example, when I have seen a doctor to get a requisition, gone to a medical laboratory to have blood drawn and tested, and been notified by the doctor (or, more likely, a nurse) to be told if the results are troubling or not. I don't wake up in the morning and 'feel a bit high cholesterol today'.

The biomedical framing thus assumes that medical practitioners and researchers are the ones to explain our bodies, to identify our embodied problems, and, presumably, to prescribe a solution/cure. As Susan Wendell (1996) has written,

…medicine can undermine our belief in ourselves as knowers, since it can cast authoritative doubt on some of our most powerful, immediate experiences, unless they are confirmed by authorized medical descriptions, usually based on scientific laboratory results. (122)

Indeed, I am repeatedly assured us that my own knowledge is woefully inadequate. For example, under "Nervous system/Brain" I read, "Many people believe they can control their stress, but it's a physical response". Here we assume that "physical response" is incompatible with people's "control". Apparently, getting "serious about stress" involves listening to scientists, since what I think I know is insufficient. I am now primed to interpret any evidence of bodily difference as an indicator of "change" which risks death and national decline, all of which can be identified, prevented, and resolved by following the advice of "medical experts".

Reproducing the problem: Stress, disability, and women

I now focus my attention on the "reproductive system" and the "subsystem" sections of the text. The heading "Reproductive system" is attached to a purple schematic drawing of ovaries, uterus, fallopian tubes, cervix, and upper vaginal canal. (None these organs are labeled, but the reader is assumed to know what is indicated. Indeed I do.) Thus, the textual heading "Reproductive system" is represented by "female reproductive system" imagery. I return to wondering why the 'female' is shown as the primary representation of both 'reproduction' and 'stress', even as the accompanying text does not state that it is focusing on women.

Indeed, prior to the "Reproductive system" section of text, the only mention of women has been the phrase "in utero" in the opening paragraph. Men have been mentioned once, under "Digestive system": "A Statistics Canada study in 2009 found that men who work more than 40 hours a week were likelier to be obese than those who work 30 to 40 hours." In this quotation, "men" are people who seem to be working too much or the right amount, but their manliness, per se, does not appear to be in question. All other references have been to "people", "the body", or various anatomical parts and medical measurements. I also know that images and terms which are 'male' have a long history as representing 'human' in the culture which produced this text, but that there are few legacies of 'femaleness' as a presumed universal in western scientific or social discourse. As Donna Haraway writes, of liberal, post-Enlightenment discourse, "The 'neutral' body was always unmarked, white, and masculine. As members of the species Man, women were silenced as such" (Haraway, 1990, p. 148). Why this specificity of female-ness in this text? Does this decision have something to do with the mention of "in utero"?

Even the "Reproductive system" text initially proceeds without reference to gender, but sexed/gendered terms emerge:

A body dealing with stress doesn't have much time for other things. Sexual dysfunction, erectile dysfunction, infertility and irregular menstrual cycles are all associated with heightened stress levels.

How do I make sense of this statement? The first sentence hardly seems to have anything to do with "reproduction" or purple ovaries. What "other things" does this body not "have much time for"? Then the second sentence clarifies: "other things" are sexuality and reproduction. And sexuality and reproduction are assumed to be inextricably linked here, in the guise of "sexual dysfunction" and "infertility", through a joint association with the "reproductive system" and a particular set of color-coded organs. Since I happen to be a reader who has two children who were produced without the direct involvement of "sex", and a sexual identity which is usually seen as "non-reproductive" (Mamo, 2007), my "queer orientation" to the text may allow me to notice this conflation more than most (Ahmed, 2006). However, plenty of other readers would be familiar with the possible separation of sexuality from reproduction. Indeed, fearful invocations of "non-reproductive" sexuality, of "queerness", have historically been used to proscribe the activities of all women (e.g. Smith-Rosenberg, 1985; Gibson, 1998).

What else do I need to assume in order for this second sentence make sense? I need to assume that "fertility" and "sexual function" are capable of being defined and identified, and that both are unquestionably desirable. I must also understand that "regular menstrual cycles" and "erectile function" are equally definable and desirable, although I am also starting to assume that they do not apply to the same "body dealing with stress". If women experience "erectile dysfunction" or men experience "irregular menstrual cycles", is this a problem? Already my queer theory critique is champing at the bit, and yet, as a reader of a mainstream newspaper, I know that this is not what the text really means.

I still do not know, however, why the body that is shown in the picture is female, given that the dire consequences of stress on the reproductive system seem, thus far, to be affecting men as much as women. My question is addressed by the rest of the paragraph:

Stress during pregnancy can also have a generational affect [sic]. Research has found that babies conceive [sic] during stressful times in their mother's lives actually develop differently. As adults, they have elevated levels of stress hormones, indicating that their mother's stress triggered a change in the baby's development.

In spite of the apparent typos, I can read and understand the "generational effect" that I presume the author intended to refer to, rather than considering the emotional registers of birth cohorts, and know that babies are "conceived" during stressful times, rather than conceiving during stressful times.

These literal "mis-readings" would rely on remaining ignorant of a dominant story about reproduction, gender, and productivity. And I already know this story, through many encounters and retellings. I understand that, in the terms of the text, "conception" and "generational effect" fundamentally concern women. In order for this paragraph to make sense, I have to understand reproduction as primarily a female responsibility. Furthermore, reproduction and stress have to be understood as activities in conflict within the female body. Working too much may make men obese, but "stress", defined as it has been as "overwork" and pictured as a woman in a skirt suit, makes women reproduce aberrant babies. In other words, women in "our busy life" risk the health and wellbeing of future generations. Women who cannot maintain "work-life balance" reproduce stress, imbalance, and possibly even death in the next generation. Is the alternative to "work-life balance" a "work-death imbalance"?

How does disability make an appearance here, if at all? Reading the phrase, "triggered a change in the baby's development", I am to assume such "change" to be undesirable. All development is, of course, change, but this idea of unwittingly causing change in a baby's or child's development calls upon the ideas of "bad change". In contemporary western societies, extensive technological and professional monitoring purports to ensure that "normal fetal development", or normative change, is occurring during pregnancy (Landsman, 2010, pp. 15-47). Any change other than "normal development" is thus coded as "disability", and seen as undesired, dangerous, and undesirable (Titchkosky 2007, pp. 85-92). The case launched against "stress" in this article is thus also a case against bodily change and variation, against disability, particularly as it appears in women's efficacy as reproducers of the nation.

The text of the larger article even explicitly names the battle against stress as a fight against disability. After discussing European plans to increase "maternity leave…as a way of easing the burden on young families" (more reproduction), Agrell turns to disability as a failure of national productivity:

Lisa Raitt, the federal Minister of Labour, is currently doing cross-country public round tables on the issue of occupational health and safety, and says work-life balance is emerging as a serious problem.
"The worst thing possible is for someone to get so unbalanced that they have to go on long-term disability or take sick days or go to work and just go through the motions," she says.

As I read that people who are stressed may "go on long-term disability", I understand that "disability" is equated with stress, imbalance, not working, and requiring economic support. Thus, stress not only poses a threat because of the ways that it 'changes' the bodies of the nation, but also because of how it 'disables' the productivity of the nation.

What does this equation of imbalance, disability, and national productivity mean in light of the sidebar text about stress and the reproductive system? It raises the stakes for women in the workforce, since women who "get so unbalanced" from work-related "stress" risk not only their own (shorter-term) productivity as Canadians, but also the future productivity of the nation in their creation of "changed" babies and "adults …[who] have elevated levels of stress hormones". In order for Canada to seize its destiny, "our time to lead", it is up to women to sort out "work-life balance".

And yet, upon reflection, none of this is surprising to me, as much as I find it objectionable. How do I already understand that stress is to be viewed as especially dangerous for women's bodies? How do I remain unsurprised that women are seen to risk the most in the transmission of frailty, non-productivity, and 'disability' to future generations? This story is very familiar to me and, I imagine, almost any reader of this article. The assertion that women's "work" comes at a direct cost to children, family, and "life", has been reiterated throughout the last century across dominant western discourses, from daycare to contraception to political participation. Public health campaigns on everything from prostitution to smoking to mothers' allowances have argued for the need to monitor women's bodies and behaviour, justified through the expression of fears for future generations (e.g. Little, 1998; Valverde, 2008; Smith-Rosenberg, 1985; Gibson, 1998; McLaren, 1990). None of this is new.

Donna Haraway, in "A Cyborg Manifesto," has written that the early twentieth-century "hygiene" movements have their modern-day equivalent in "stress management" (1991, p. 12). Where "hygiene" movements promoted many public health measures focusing on professionally monitored "purity" in lifestyle and reproduction, this article promotes a similarly individualized, expert-guided answer to managing "stress" (Valverde, 2008). As indicated by the photo of the student spitting into a tube, I read that regular cortisol tests are promoted as a technique to "monitor" stress. But what solutions can doctors actually offer, other than to announce that the patient is, indeed, stressed, and should now take on the additional task (and stress) of reducing her/his cortisol level? The only stated recommendations for changing "work-life balance" remain privatized and vague, such as "combating" certain "feelings".

The stated primary suggestion of the article is to take stress "seriously." Is the unstated suggestion really that women should "work" less? When one bolded subheading near the see-through woman's left pump reads, "When biology trumps ambition", are women being told to be less "ambitious"? Will "cortisol levels" be a new technology to reinforce glass ceilings? I am not to question why men recede into the background, why men are not asked to figure out "work-life balance" so much as to limit their work to "30-40 hours per week" and to see their doctors.

Moreover, what kind of women, with what kind of work, is this text talking about? Who is the author especially concerned might become "unbalanced" in ways that adversely alter social reproduction? "Stress" here is not about securing enough food and shelter, or about the demands of cleaning other people's houses or working the night shift. "Work" in "work-life balance" is represented as primarily middle-class, white- or pink-collar employment that necessitates wearing a blazer, skirt, and heels. As such, there are numerous associations of race, class, and immigration status related to who is asked to consider the "stress" in their lives. Just as early twentieth-century "hygiene" movements promoted notions of "purity" which elevated white, Anglo-Saxon, middle-class, able-bodied women (Valverde, 2008), now "stress management" asks me to understand "stress" with regard to the demands of being a (probably white, probably middle-class, undoubtedly able-bodied) woman whose "work" in "the office" is in contradistinction to "life".

Who works, who cares? Exceptional care, expected stress, and deadly disability

Significantly, the "work" that is discussed in "work-life balance" is also paid work in a clearly demarcated, non-domestic labor force. Dorothy Smith's "generous notion of work" as "anything done by people that takes time and effort" is nowhere to be found in this article (Smith, 2005, p. 151). Such an understanding would blur the "work-life" distinction, and ask readers to consider "stress" as part of "life", including the realm of 'women's work', paid and unpaid. Indeed, through its exclusion of non-office-based work, the conflation of 'stress', 'non-domestic', and 'middle-class' is reinforced, leaving little room to consider the stress of people who care for the homes and children of other people (traditional 'women's work' done disproportionately by racialized and poor women). Any "generous definition of work" would undermine the implied message that stress is the price that Canadian society and women's bodies are paying for high-status women's decisions to engage in paid labor outside the home. If work instead occurs in all areas of life, the solutions to stress might similarly generalized, systemic, and even revolutionary.

This carefully delimited understanding of work is reinforced when the text does make a reference to stress that comes from somewhere other than the "the office": in the case of mothers caring for disabled children. By explicitly raising 'disability' as an exception, the text asserts a rule that the care that mothers provide to their children, is not, in and of itself, work, and therefore is not a cause of toxic "stress". The threat that stress poses to women's bodies, their offspring, and to the future of the nation itself, must be understood in this text as resulting from exceptional care, and certainly not from ordinary care, the 'non-work' of parenting in general and mothering in particular. Indeed, in the representations of the text, the presence of (need for) such exceptional care may be connected to the decisions women have made with regard to paid labor.

As a reader, I have already seen "disability" and "parents" appear, but these two have not been explicitly paired to this point. Under the caption heading, "Subsystem", still next to our see-through woman but not connected to any colored anatomy, the meaning of a parent of a disabled child is given some flesh:

Recent findings demonstrate that stress can shorten a lifespan by damaging the body at a cellular level, eroding the telomeres that keep chromosomes from fraying. One study of mothers who care for disabled children found the length of their telomeres tied to how much stress they were under. Each year of child care caused roughly six years of aging. Even worse, another study exposed lab rats to stress and found their brain cells became dramatically smaller.

My first response upon reading this segment was one of alarm. I am a mother of a child who is sometimes categorized as disabled — does this research finding then apply to me? Am I dying off more rapidly because of caring for my child?

The alarm response is what this article, more generally, appears to be trying to instill. There are no suggestions, for example, of what "mothers who care for disabled children" should do in response to this information. "Mothers", "caring for", and "disabled children" are simply linked to "under stress". "How much stress" seems to indicate the wiggle room of individual variability, however this space is almost immediately eradicated by the summary equation of "each year of child care" with "roughly six years of aging". "Each year", thus, of being a mother, and of caring for a disabled child, is understood as interchangeable with another year, another mother, another child, another example of caring. Further, there is no means for the average person to judge the health, vitality, and state of his or her telomeres. Now that I learn of my telomeres' possible early demise, I have another source of "stress" with no resolution. Even if I don't understand how the mathematics could work (if I care for my child for 20 years, wouldn't that take 120 years off of my life?), the alarm remains.

And what do I make of the "even worse" dismissal of "mothers of disabled children" in favor of the lab rats? Had these mothers, or their "disabled children" been considered as readers, perhaps the finding that stressed lab rats had smaller brain cells might not have been presented as "even worse" than the finding that human mothers could die off rapidly. But regardless of authorial intent or the anticipated audience, what makes the possibility of overstressed, rapidly-aging, deteriorating mothers caring for disabled children so expected, so unsurprising, that any alarm it might raise can be trumped by shrinking rodent brains? "Even worse" for me, was that I was not immediately appalled at the article's "even worse" clause. I had to re-read the passage to even notice its dismissive effects. I was alarmed by the possible effects of "stress" on my cells but not shocked, and was thus easily distracted by the rat brains. What does that tell me about mothers, disabled children, and stress?

Disability thus appears as an expected cause of maternal stress, as well as a result of it. Here, and elsewhere, caring for a disabled child is equated with expected stress, and this expected stress is expected to stress mothers. There is no statement about stress and its effects on the mothers of non-disabled children, nor any questioning of how "disability" is determined. This text joins with many others in associating "parents" (and particularly "mothers") of "disabled children" with "stress".2 This passage relies upon and recreates the assumption that mothers are primary caregivers, that they bear the brunt of the stress associated with caregiving, and that the toll that this takes on their selves and their bodies is unsurprising.

I started my inquiry with curiosity about the meaning of "parents of disabled children." I have now spent almost all of my time reading, thinking, and talking about women and mothers. I do not learn about how much stress "fathers who care for disabled children" might be under, nor about how their telomeres are holding up. I do not know what men are doing to (re)produce disability. These "mothers" are apparently in a void, alone with the "disabled children" they care for. The communities, relationships, systems, supports they might have or lack do not factor into the already-questionable equation.

The only solution, it seems, to the equation as it is written, is not to be a mother caring for a disabled child. Once you are a mother caring for a disabled child, your story is written. The story becomes one of misfortune, of disability as the tragic narrative twist that results in an early death for the mother. As such, this narrative equation fits with other individualized portrayals of disability as inevitably and only lack, negation, and tragedy, to be responded to through the charity but not the responsibility of others (Longmore, 2009). When the problem of "mothers caring for disabled children" is presented without a stated solution to me, a reader of this text, what "solutions" am I expected to imagine, even as they remain unstated? Abortion, eugenics, institutions, relinquishing children for adoption, even willing/spurring on the child's quick death: these unspoken alternatives linger in the shadows, known if troubling options already exercised by some. To revisit Rod Michalko's consideration of the high-profile murder of Tracey Latimer by her father, how might such a framing be used to justify Robert Latimer's actions? When he murdered his disabled daughter, was he substituting one, less valued/valuable life (his daughter's) for another, more valued/valuable one (his wife's) (Michalko, 2009)? What happens when I am asked to weigh who, and what, is "even worse" in the trade-offs of the "work-life balance"?

Further, what solutions am I asked not to imagine? If "mothers caring for disabled children" simply equal deadly stress, I am not to think about how this stress might be alleviated, shared, or reframed. Indeed, there is no explicit consideration of love and relationship: "caring for disabled children" and "being mothers" are the only requirements for stress in the text, without the specification that these mothers are caring for their own children (is this relationship assumed or irrelevant?). Again, the state of motherhood and choosing/being forced to care for disabled children reads as an expected and overdetermined tragedy with no way out except for the removal of the disabled children, or the mothers, from the equation.

At the same time, given what else is written here and elsewhere, this 'tragedy' may not be totally free from blame or accountability. Women's "choices" come under scrutiny. Given other discourses on "balance" and women's decisions, such stress may be viewed as self-inflicted by women who neglected the prescribed expert advice by "caring for" their children and prioritizing emotion and caring over science (Traustadottir, 1991). Based on the other equations in this article, mothers of disabled children may be seen as "to blame" for their "choices" to work, thus creating stress which negatively affected their developing babies. As Gail Heidi Landsman (2010) has documented, when there is an expectation of biomedically guaranteed "perfect" babies, mothers of "imperfect" babies (or children, or adults) are seen and see themselves as to blame for something that they did (e.g. how they ate, smoked, slept, worked, disciplined), but also for what they did not do, including prenatal testing and abortion. As Titchkosky (2007) summarizes, "Disability transmogrified as matter gone wrong helps to produce, and is produced by, women regarded as those who make things matter wrongly" (p. 101).

What of the "disabled children" themselves? Their lives are only given meaning as a cause of stress, and possibly as a result of stress/imbalance/poor judgment. I learn from the text that these children are a collective burden that takes a cellular toll on the collective martyrdom of mothers, in apparent contradistinction from any other children. We do not know how stress affects these "disabled children" or the adults that they might become. They are only vehicles of stress, not complete subjects with individual desires, relationships, and experiences. I am asked to see the "disabled child" as nothing more than a tragedy with a ripple effect, whose own story is over before it has even begun. Indeed, the possibility that the reader might be interested in how and whether disabled people may experience stress is completely precluded.

Such a negation of disabled subjectivity resonates with Tom Shakespeare's (2006) summary of disability rights movements' calls to shift disability discussions: "Whereas historically research and policy was dominated by proxies for disabled people (parents, carers, professionals), now it is the views of disabled people themselves which matter most" (p. 186). And yet Shakespeare also suggests that increasingly nuanced consideration of parents can be brought into a disability rights framework: "While accepting the importance of independent living and demedicalisation, I think there might be a danger of ignoring or undervaluing the role of parents. In stressing the negative aspect, there is a danger of giving an unbalanced picture" (2006, 188). Gail Heidi Landsman (2010) has similarly argued that mothers of disabled children can offer perspectives that usefully contribute to contemporary Disability Studies scholarship. Any singular version of "parent of a disabled child" (as murderer, oppressor, martyr, or saint) is as flimsy and dangerous a construction as a singular "disabled child" or "disabled person".

Conclusion

My encounter with this newspaper article shows how the construction of 'parents of disabled children' is enmeshed with interpretations that both precede and are refigured by such a category. First, to be a parent is to be gendered: mothers and women are the focus of reproduction and caring here. Second, this text can be read as instructive or prescriptive. It uses stress to indicate what should not be happening, and under these terms, disability should not be happening. Disability is presented as something to be avoided, prevented, and feared. Third, we learn that Canada's leadership is perceived to be threatened by women who are stressed from "overwork", and that unwelcome changes in their babies' development result. Fourth, the text presents assumptions that, while unrelated to other caring work, stress is an expected if deadly part of mothers' caring for a disabled child. The final message? Women who avoid excessive office work and reproduce 'properly' (without stress, with normative fetal development), it seems, will not be stressed. In this reading, to be a parent of a disabled child is to be a mother, a woman, who has failed, and who is suffering from the deadly stress of her failure.

Further, this reading suggests that, while women may be asked to lay down their paid 'work' in the service of reproducing Canada's future, productive citizens, such (expected) sacrifices will only be asked of certain middle-class, educated, non-disabled, Canadian women. Thus, the outcomes of stress, according to this text and the assumptions upon which it draws, depend on the individual conduct of a subset of women, such that the fate of the nation hangs in the (work-life) balance. At the same time, I am instructed to be clear on the limits of stress. I am to understand that this threatened nation-state, Canada, does not have any particular responsibility to resolve this stress, which produces and is produced by disability, this stress that both relies upon and destroys women's bodies. No, that task is also up to individuals, and to women most of all.

This work was supported by a Joseph-Armand Bombardier Canada Graduate Scholarship through the Social Sciences and Humanities Research Council of Canada.

Works Cited

  • Agrell, S. (2010). "Stress." The Globe and Mail, Saturday October 30, 2010, pp. A14-A15.
  • Ahmed, S. (2006). Orientations: toward a queer phenomenology. GLQ, 12(4), 543-574.
  • Bertelli, Y., Silverman, J., and Talbot, S. (Eds.) (2009). My baby rides the short bus: the unabashedly human experience of raising kids with disabilities. Oakland, CA: PM Press.
  • Brown, I. (2009). The boy in the moon: a father's search for his disabled son. Toronto, ON: Random House Canada.
  • Bumiller, K. (2009). The geneticization of autism: from new reproductive technologies to the conception of genetic normalcy. Signs, 34(4), 875-899.
  • Butler, J. (2004). Undoing gender. New York, NY: Routledge.
  • Collins, P. H. (2000). Black feminist thought: knowledge, consciousness, and the politics of empowerment. New York, NY: Routledge.
  • Epstein, R. (2009). Introduction. In Epstein, R. (Ed.) Who's your daddy? and other writings on queer parenting, (pp. 13-32). Toronto, ON: Sumach Press.
  • Garland-Thomson, R. (2009). Disability, identity, and representation: an introduction. In Titchkosky, T. & Michalko, R. (Eds.) Rethinking normalcy: a Disability Studies reader, (pp. 63-74). Toronto, ON: Canadian Scholars' Press, Inc.
  • Gibson, M. F. (1998). The masculine degenerate: American doctors' portrayals of the lesbian intellect, 1880-1949. Journal of Women's History, v. 9 (4), 78-103.
  • Gupta, V. B. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19, 417-425.
  • Haraway, D. (1990). Investment strategies for the evolving portfolio of primate females. In Jacobus, M., Fox Keller, E., & Shuttlework, S. (Eds.), Body/politics: women and the discourses of science, (pp. 139-162). London & New York: Routledge, Chapman & Hall.
  • Haraway, D. (1991). A cyborg manifesto: science, technology, and socialist-feminism in the late twentieth century. In Simians, cyborgs and women: the reinvention of nature, (pp. 149-181). New York, NY: Routledge. Accessed March 29, 2011 at http://www.stanford.edu/dept/HPS/Haraway/CyborgManifesto.html
  • Hill, S. A. (2008). African American mothers: victimized, vilified, and valorized. In O'Reilly, A. (Ed.) Feminist mothering. (pp. 107-121).
  • Landsman, G. H. (2010). Reconstructing motherhood and disability in the age of "perfect" babies. New York: Routledge.
  • Laverty, S. M. (2003). Hermeneutic phenomenology and phenomenology: a comparison of historical and methodological considerations. International Journal of Qualitative Methods, 2(3). Article 3. http://www.ualberta.ca/~iiqm/backissues/2_3final/pdf/ laverty.pdf
  • Little, M. (1998). No cars, no radio, no liquor permit: the moral regulation of single mothers in Ontario, 1920-1997. Toronto, ON: Oxford University Press.
  • Longmore, P. K. (2009). Conspicuous contribution and American cultural dilemmas: telethon rituals of cleansing and renewal. In Titchkosky, T. & Michalko, R. (Eds.) Rethinking normalcy: a Disability Studies reader, (pp. 137-157). Toronto, ON: Canadian Scholars' Press, Inc.
  • Mamo, L. (2007). Queering reproduction: achieving pregnancy in the age of technoscience. Durham, NC & London, UK: Duke University Press.
  • McLaren, A. (1990). Our own master race: eugenics in Canada, 1885-1945. Toronto, ON: McClelland & Stewart.
  • Merleau-Ponty, M. (1958 [1945]). Phenomenology of perception. London, UK: Routledge & Kegan Paul.
  • Michalko, R. (2009). Coming face-to-face with suffering. In Titchkosky, T. & Michalko, R. (Eds.) Rethinking normalcy: a Disability Studies reader, (pp. 91-114). Toronto, ON: Canadian Scholars' Press, Inc.
  • Ordover, N. (2003). American eugenics: race, queer anatomy, and the science of nationalism. Minneapolis, MN: University of Minnesota Press.
  • Rich, A. (1986 [1976]). Of woman born: motherhood as experience and institution. New York, NY: W. W. Norton.
  • Risdal, D. & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: a historical review and meta-analysis. Research and Practice for Persons with Severe Disabilities, 29(2), 95-103.
  • Salmon, A. (2004). 'It takes a community': constructing Aboriginal mothers and children with FAS/FAE as objects of moral panic in/through a FAS/FAE prevention policy. Journal of the Association for Research on Mothering (6) 1: 112-123.
  • Shakespeare, T. (2006). Disability rights and wrongs. New York, NY: Routledge.
  • Smith, D. E. (2005). Institutional ethnography: a sociology for people. Lanham, MD: AltaMira Press.
  • Smith-Rosenberg, C. (1985). The New Woman as androgyne: social order and gender crisis, 1870-1936. In, Disorderly conduct: visions of gender in Victorian America, (pp. 245-296). Oxford, UK: Oxford University Press.
  • Statistics Canada. (2008). Participation and activity limitation survey 2006: families of children with disabilities in Canada. Catalogue no. 89-628-X — No. 009.
  • Titchkosky, T. (2007). Reading & writing disability differently: the textured life of embodiment. Toronto, ON: University of Toronto Press.
  • Titchkosky, T. (2009). Disability Studies: the old and the new. In Titchkosky, T. & Michalko, R. (Eds.) Rethinking normalcy: a Disability Studies reader, (pp. 38-62) Toronto, ON: Canadian Scholars' Press, Inc.
  • Traustadottir, R. (1991). Mothers who care. Journal of Family Issues (12) 2:211-228.
  • Valverde, M. (2008). The age of light, soap & water: moral reform in English Canada, 1885-1925. Toronto, ON: University of Toronto Press.
  • Weiss, G. (2008). Refiguring the ordinary. Bloomington, IN: University of Indiana Press.
  • Wendell, S. (1996). The rejected body: feminist philosophical reflections on disability. New York, NY: Routledge.
  • Weston, K. (1991). Families we choose: lesbians, gays, kinship. New York, NY: Columbia University Press.

Endnotes

  1. See also Titchkosky, 2007, chapter 3, "Metamorphosis: Making disability a medical matter" and Susan Wendell, 1996, chapter 5, "The cognitive and social authority of medicine."


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  2. For example, in the Statistics Canada report on a 2006 survey of "Families of children with disabilities in Canada", the introduction reads, "families of children with disabilities experience higher levels of stress, illness, and marital strain compared to families without children with disabilities" (2008, p. 6). Among the charts that follow, the report documents "Mothers' employment most affected by child's disability" (p. 11). The report also finds increased "stress" and reduced parental health with increased "severity" of the child's disability (pp. 8-9). See Gupta, 2007 for another example of the discursive association of stress with parents of disabled children.


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Copyright (c) 2012 Margaret F. Gibson



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