Disability Studies Quarterly
Summer 2005, Volume 25, No. 3
Copyright 2005 by the Society
for Disability Studies

Clenched Subjectivity: Disability, Women, and Medical Discourse

Tanya Titchkosky, Ph.D.
St. Francis Xavier University
P.O. Box 5000
Antigonish, NS
Canada B2G 2W5
E-mail: ttitchko@stfx.ca


Situated at the intersection of disability and feminist theory, this paper conducts an analysis of a way that women and disability are made meaningful in everyday life. The paper analyzes a seemingly ordinary newspaper story of disability; the story begins by telling of a woman who knowingly remains pregnant with a disabled fetus; goes on to provide statistics of similar cases and ends narrating the lives of families with disabled members. Bypassing the pro-choice/pro-life form of argument, I delve into the newspaper's medicalized textual rendering of disability and women and show how the meanings of both are enacted. I demonstrate the ways that text organizes the reader's consciousness so as to reproduce women as the embodiment of uncontrollable subjectivity and reproduce disability as nothing other than devalued lack. By interrogating the processes involved in medicalizing life through its technologies, the paper exemplifies the socio-political necessity of regarding text as a form of social action in need of critical analysis.

Key words: sociology of knowledge, medical discourse, Disability Studies, women, fetal abnormality, meaning making, textual enactment.


The first clue appeared on the ultrasound, a hint in the microscopic clenched fists' awkward inward curl and in the umbilical cord's missing artery that something was amiss. The doctor called. It could be Down syndrome or ... Only amniocentesis - examining a sample of fluid from the womb - could solve the mystery.

This depiction of something amiss serves as the opening lines of a newspaper article headlined, "Of Human Bondage: How the System Martyrs Parents of Disabled Kids," written by Margaret Philip (Globe and Mail, February 16, 2002, pp. F4-5). The article, which includes a relatively lengthy narration of the discovery of fetal genetic abnormality, as well as interview excerpts with parents, statistics, and pictures of children, appears over two full pages. This article was published in a nationally distributed Canadian newspaper, the Globe and Mail, within the special Saturday-only "Globe Focus" section.

Readers have been invited, and even seduced, into the genre of news medical mystery in an ordinary fashion, that is, by making a yet-to-be defined bodily anomaly appear through a story of its technological discovery. This kind of story grants agentive status to ultrasound machines and reproduces the taken-for-granted sense that technology alone can provide the meaning and movement of life. The illusory certainty in technology nonetheless delivers a mystery: Something is amiss. That something is amiss is delivered to pregnant women and readers alike in one of the most familiar and ordinary of ways; the doctor will call, and we are already expecting this. My paper examines the extraordinary social consequences of this ordinary orientation toward bodily anomaly.

Methodological Background: Interpreting Interpretation

As Gerard Goggin and Christopher Newell (2003) make radically clear, current understandings of technology as autonomous conceal their own political and social consequences and are often combined with the legitimating authoritative force of science. Such "technoscience" practices organize the actual ways people can and cannot live with disability: "effectively controlling ... aspirations, movements, and access to various parts of the social world' (Goggin & Newell, 2003, p. 10). When a technoscience rendering of bodies, minds, or senses appears in the news (as it regularly does), and appears to its consumer (that's us) as unquestionably sensible, then the on-going regulation of our consciousness is occurring. That technology "finds," and that medicine can "call and proclaim," and that it all makes sense, are opportunities to examine how the aspirations and movements of our collective ways of conceiving of bodies are manage through discursive practices such as everyday newspaper stories. Producing "the news" is couched within a common-sense reality that can be taken as readily comprehensible. The new, the alarming, the spectacular or the human interest story each is framed against a background of taken-for-granted expectancies of ordinary life (Golding & Elliott, 1996, p. 405; Hall et al., 1995, p. 424; Titchkosky, 2003, p. 8). The human interest story that, for example, parents of disabled children are martyrs is couched in the ready-made assumption that technology and science enable medicine to define bodies as problems as well as the sorts of lives we may live with these problems.

The newspaper article I analyze here is exemplary: It is very ordinary and sensible, it is typical and seems reasonable, and thus this text provides the possibility of analyzing it for, in Judith Butler's words, the "conditions of its emergence" (1997, p.13). The text has come to make an appearance in the midst of a variety of conditions, such as, the normative order of literate culture, commodification of knowledge, as these intersect with a popular press industry that includes trained and accomplished authors such as Philip. An analysis could treat the text as symptomatic of these larger structures that help to organize the text's being-in-the-world as an intelligible object. Still, there is more. There is the matter of the text itself as a context for inquiry. What conditions the meaning of this newspaper story of martyred parents and disabled children? How is it sensible that the starting point of a story of martyrdom is the technological discovery of bodily anomaly presumably located within a woman's body? How does that which conditions the sensibility of this text make women, bodies, and disability meaningful?

I address the conditions of the text's emergence through an analysis that asks how the text is empowered by, and simultaneously empowers, the genre, or language game of medicine (Bakhtin, 1986; Wittgenstein, 1976; Smith, 1999).

In the face of the common experience that something is wrong, medical discourse wields a fascinating power. Operating at the confusing intersection between science and technology on the path of everyday life, medical discourse seems to offer all who attend to its directions a clear organized relation to embodiment. The textual empowerment of medicine through its depiction of the fetal clenched fists, etc., are regarded here as opportunities to examine how this discourse works to organize our conceptions of disability and embodiment in general. The sensibility of the text reflects that which has conditioned its existence just as much as the text activates a form of medical language and seduces the reader into a taken-for-granted relation to this language use. In the context of the text resides the ongoing activity not only of making up the meaning of people and issues, but also of constructing relations between these people and those issues. I am speaking here of the issue of "governmentality," or as Foucault puts it, the conduct of conduct which governs our governing of ourselves (Martin et al., 1988; Pratt and Valverde, 2002; Rose 1999; Ruhl, 2002). Some Disability Studies' scholars have shown some of the ways that embodiment is governed as this is reflected in disability discourse (Corker 1998; Corker and Shakespeare, 2002; Davis, 2002; Stiker, 1997; Titchkosky, 2003b). I show how text is one way women are made into problems, just as disability's iconic status as abnormal deficiency is made to exist as if beyond question.

This analysis is grounded in sociologically-oriented feminist and disability theorizing that flows from the linguistic turn influenced by the traditions of phenomenological and hermeneutic inquiry. These traditions dedicate themselves to an analysis of the order of interpretation asking how best to address that which appears as a reality built up through interpretation; a kind of interpretation of interpretation. I conduct my analysis guided by the understanding that one way that the sensibility (obviousness) of the medicalization of women and disability appears and comes to manage, even master, our imaginative and experiential relations to embodiment is through popular text. One way that popular text achieves its sense is by making embodiment appear as a medical problem and, therefore, as a problem best managed by technology and science regulated through a medical regime. Text, then, is a site for, and a form of, oriented social action. Text is a scene of interpretation both reflecting and building the culture within which it appears. A single text suffices in this inquisitive endeavor insofar as we can treat a text as an occasion, as Hannah Arendt (1994, p. 311ff) suggests, to "... become humble again and listen closely to the popular language ..." A single instance of sensible speech suffices since this text is representative of our cultural logic surrounding bodies, mothers, and the birth of disability.

The unique approach offered here requires a constant search for the making of meaning: together text and reader are meaning makers, oriented to the social act of interpretation; the inescapable but ultimately ordinary activity of meaning making is all that this sort of inquiry aims to address. Such an approach aims, as Stiker (1999, p.18) suggests, to "...enlarge the understanding we already have." The meaning of the text, however, is not found in the structured sequence of words. Instead, meaning resides in the flash that arises between and amongst words where, as phenomenologist Asenjo says, words " ... must be taken as ephemeral condensations of ambiguous malleable relations: they are the local incarnation of global meanings, meanings which vary in the process of writing, reading, re-writing, and re-reading" (1988, p. 24). One's experience of reading this writing can be consulted for the flashes of meaning that establish interpretive relations between bodies and technology and between women and disability.

Textual Data

The newspaper article begins with the lead headline, "Of Human Bondage: How the System Martyrs Parents of Disabled Kids." However, when the reader turns to page F4, where the two-page article is presented in its entirety, a different headline appears. Such shift in lead headlines is a convention within the current newspaper industry. Thus, on page F4 readers find the headline, "Victims of Love" appearing in large bold print, topping both the text and some of the various pictures of disabled children that fill the center of the article. As the first headline indicates, the text makes the explicit claim of being an informative exposé on the failure of safety-net systems of state agencies to respond to the needs of parents of disabled children.

The shift in headline, "Victims of Love," demonstrates the article's adherence to the conventions of the journalistic genre while, at the same time, the shift introduces some ambiguity into the reading situation. Are disabled children the victims, or are the parents? Either way, what makes up this victimage, of what is it comprised? The ambiguity of the meaning of "victim" is intensified by the fact that the article opens by highlighting the problem of women's decision to give birth while they possess knowledge of fetal abnormality. Since reading, like writing, occurs in time and space, title shifts such as "systems," "love," "victimage" and "medical problems" are not discrete interpretive relations to disability; they are instead organized by the text and by the reader steeped in the normal conventions of reading. As Elizabeth Grosz says, texts are constitutive of "both their milieu and the means by which they become comprehensible and tamed ... histories – stories and reconstructions of the past — are in fact illuminations of a present that would not be possible without this past" (2003, p. 13-14). Other scholars also illustrate the theoretical and political importance of developing an analysis of the multiple ways in which disability is made manifest, and manifestly meaningful, through texts (Davis, 2002; Garland-Thomas, 1997; Mitchell and Snyder, 2000; 1997; and Titchkosky, 2003a, 2003b, 2001). Examining how, for example, one interpretive category, such as medicine, wields authority over others means allowing the ambiguity that exists between the different renderings of the problem of embodiment to emerge.

Still, the author, Philip, presents an unambiguous liberal orientation to disability. For example, she accepts the conventional medical understanding of disability as an unquestionable matter of abnormalcy and subsequent lack. Later, Philip informs her readers of the history of the rise of the independent living movement that sprung many disabled children and adults from institutions. She writes, eventually, of parents who care about their disabled children and in so doing Philip implicitly shows that she too cares about what is and is not happening to these families. What is most interesting, however, is Philip's introduction; for it is here that the story of women and disability as medical problems, discovered and managed through a variety of technologies, is accomplished. I turn now to a detailed analysis of the specific introductory narrative of the text, paying attention to how the text introduces readers to embodiment as a problem.

Victims of Love: The Constitution of Medical Issues

Establishing the Problem
The introductory tag lines, "Of Human Bondage: How the System Martyrs Parents of Disabled Kids," "Victims of Love" and "Care and Woes," are followed by a short block of text that introduces not only disability but also the author: " ... Margaret Philip finds that many Canadian families are on the verge of despair ... " (Philip, 2002, p. F4). Her exposé of this despair begins with a depiction of an ultrasound test. Again:

The first clue appeared on the ultrasound, a hint in the microscopic clenched fists' awkward inward curl and in the umbilical cord's missing artery that something was amiss.
       The doctor called.

Philip defers to the authoritative image of the ultrasound. This image "voices over" Philip's own voice and displaces her as author. Still, the beginning of the text seems almost personal in its poetic description of an abnormal happening. There is a writer of course. But in the face of the startling clues of something amiss, it seems almost natural that the "really wrong" will appear as if it is outside of human acts of noticing and interpreting.

It should be noted that ultrasound is today regarded as the authoritative text/image of many different aspects of pregnancy (Stabile & Hartouni, 1998). Ultrasound is a technology that uses pulsating sound waves to produce an image of tissue. In relation to pregnant woman who have access to such health care procedures, ultrasound imaging has become routine. A " ... scanner moves over the abdomen of the woman, sound waves penetrate the uterus; these waves bounce back to a monitor that produces the image, which can be captured immediately by the Polaroid camera attached to the machine" (Cook, 1996, p. 74). The clue to something really wrong is made to appear as if it is not produced by human interpretation, but is instead produced by the stark and undeniable technological authority, which has the ability to see inside the body -- the ultrasound image.

Making the author's voice disappear, while making it appear as if technology alone delivers the problem, is a move in the play of establishing legitimacy. Critical media studies demonstrate that news is an "end product of a complex process..." (Hall, 1996, p. 424) involving many decisions including how to define news-worthy problems and how to do so in a readily recognizable way. The displacement of the author's voice is a common practice of legitimation. Nonetheless, the practice is social and acts to achieve meaning. Displacing the author's voice offers the reader an up-close look at something going wrong, while simultaneously making it appear as if this desire to see and to know exists in the starkness of the wrong and not in the relation between writer and reader.

A departure from the normal configuration of fetal development as narrated through the use of ultrasound technology becomes a "clue" and through this description the reader is delivered a sense of a problem, namely, imaged symptoms of a fetus that, in general, is a problem because it has a problem. The problem is not that of a system that martyrs parents of disabled children, at least not so far. Nothing is attended to outside of the fetus and the technology geared for reading it for "microscopic clues" of abnormality. This clue is depicted as belonging solely to the domain of the ultrasound, which is a common, yet political, diagnostic imaging procedures (Cook, 1996, p. 76; Hartouni, 1998, p. 208; Stabile, 1998, pp. 187-188). The reader is given a sense of a type of problem documented only by the authority of technology deployed and enveloped by medical practice. This represents the birth of disability as abnormality conceived of as a medical problem.

When disability is given birth to by medicine, medicine must labor to separate women from their bodies. There is no mother mentioned in Philip's depiction of the ultrasound image and it is difficult to remember that "the division between woman and fetus is historically unprecedented" (Stabile, 1998, p. 172). In the face of the authoritative technoscience image of something wrong, it is relatively easy to forget that the image maker, like the embryo, and like its story, has a history (Sawicki, 1999, pp. 191-193). Moreover, medicine must further enact a separation between bodies and any sense of a wider social context. As Irving Zola reminds us, constituting a medical trouble requires that discourse on technology be used to " ... locate the source of trouble as well as the place of treatment primarily in individuals and makes the etiology of the trouble asocial and impersonal" (Zola, 1977, p.62).

Ultrasound is used to provide the reader with a legitimated sense that there can be the discovery of objective clues of abnormalcy. This legitimacy is predicated upon a collective understanding that it is sensible to not acknowledge our ordinary interpretive relations to medicine as a powerful separator of bodies from that which conditions them. This conditioning includes texts that provide us with legitimized ways of regarding embodiment and it includes technology interpreted as if it is an ahuman activity. Readers are provided with a text of some "thing" objectively wrong and are not provided with images that reflect culturally specific ways to imagine wrongness. Without signs of medical decision-making and interpretation, it becomes difficult to remember that imaging something is a way of forming the decision to look. As Rod Michalko (1998, p. 40) says, any look is, "...essentially a social act. Looking and noticing is located within a social web of interests, purposes, hopes, fears, anxieties, and so on." The ordinary phraseology for noticing something wrong – "The first clue appeared on the ultrasound" – accomplishes the extraordinary work of displacing not only the author but the entire sociality that grounds contemporary ways of looking at bodies. Through separations, such as the one between women and their bodies, and through displacements, such as displacing an imager by the de-contextualized image, the authority of the medical domain is achieved and its coherent articulation of the whole of human embodiment is accomplished. The problem, something amiss, is established through the ongoing achievement of technology as if it is objective and autonomous. The problem is imaged and exposed; the means of doing so are not.

Something Amiss
As the objective knower, ultrasound need not be depicted as social action and any details of its contexted existence are made absent within and by the text. This technology is presented as an asocial objective mirroring of some-body but this presentation is reliant upon a number of veiled social acts – separations, displacements, and absences. "Ultrasound" is used in such a way as to establish the power of the god trick (Haraway, 1991, p. 189) and through this trick the reader comes to an unquestioned sense of something amiss. Disability is thus defined as the anomalous, the missing, it is defined as lack and as abnormality, which is documented by technology, all of which will be treated by the call and concern of medicine. Not only is there no clue as to how the system martyrs parents of disabled children, there is no reference to a social context of any kind, not even that of a woman's body. Techniques, images, and clues appear as if they happen outside of the social organization of hospital or clinic. Technology appears to produce its results without the need for the reader to imagine even a technician operating the body-imaging-machine, let alone, to imagine the presence of an "actual" woman's body (Smith, 1990, p. 5). Ultrasound is the linguistic device that serves the function of abstracting the body-as-problem from social life.

Then, the doctor calls. It does not matter who this doctor is, nor does it matter where the doctor is, nor does it matter when the doctor is calling. The doctor's name and gender are not given, nor is the reader given any sense of the doctor's training, specialty, or social location. An anonymous agent (Sawicki, 1999, p. 194), the "doctor" who "calls," is the only necessary identity marker. The only thing the reader needs to remember is that when medicine calls, there is a good (medical) reason for it to do so, and this reason has been provided for by Philip's account of the ultrasound image with its authoritative discovery of abnormality. No question about it, something is amiss, some-thing is wrong.

The abstract doctor who calls is a textual enactment of medicine that hides the wielding of its decisive authority in the veil of expertise, objectifying and fragmenting the body in the process. The socially abstract and disembodied doctor normalizes the notion that some human problems are beyond a need to attend to their social organization and production, thus reproducing the belief that some technologies and practices of medicine are not grounded in decisive and, thereby, oriented human action. This sensibility allows the reader to experience "the doctor called" as clear and obvious while not experiencing the doctor's particularity as missing. This is not a strange way to speak of doctors. It makes sense. The disembodied, de-contextualized doctor can call and can be called. While bodily uncertainty or pain may make this call most welcome, the call nonetheless is a masterful organizer of that uncertainty and of that pain.

Seeing Abnormality as Devalued Form of Life

The doctor called. It could be Down syndrome or some other genetic fluke, the simple biological mistake of a spare chromosome that can render a child mentally or physically shortchanged. Only amniocentesis – examining a sample of fluid from the womb – could solve the mystery.

This represents the spirit of what the doctor said when the doctor called. The medical call of abnormality transforms the ultrasound "image" into the doctor's "actually seeing" of abnormality. "Clearly, technoscience knowledge confers power upon those who control it ..." (Goggin and Newell, 2003, p. 11). The doctor's call mediates what she or he has seen and mediates power relations. Still, what is wrong is a mysterious problem to be unraveled by an amniocentesis test. Amniocentesis testing is a procedure that involves collecting a sample of amniotic fluid by inserting a needle through the pregnant woman's abdomen. Medicine conducts amniocentesis tests only in the light of a medical version of risk, such as, the age of the woman, history of disability, illness, and, of course, an abnormal ultrasound image. While medicine conducts this test in the face of such risk, the test itself has its own risks, such as spontaneous abortion (Berebue, 1996, pp. 40-94).

Unraveling the problem involves two aspects. First, medicine wants to solve the mystery as to what type of disability it is dealing with, for example, "Down syndrome or some other genetic fluke." That the problem of disability is located at the level of the gene is an important issue that is just beginning to receive theoretic attention. In the words of Nikolas Rose (1994, p. 50), "Our modern medical experience is, first, constituted in certain dividing practices ... " The amniocentesis test will allow for medicine to divide one type of problem from another but, for now, the diagnosis of a type of disability remains a mystery and medicine is depicted as guessing at what "it could be ... " Nonetheless, the consequences of disability are not mysterious; someone (and not medicine) will be, as Philip puts it, "shortchanged." Medicine is depicted as already successfully actualizing a dividing practice – the contours of the shortchanged life are seen as separate and distinct from the contours of normal fetal development, and the woman is separated out so radically that she is yet to make an appearance. It is now the self-proclaimed task of medicine to " ... locate subjects in different relations to the decisions and actions made about their problems ... " (Rose, 1994, p. 52).

The second aspect of dealing with the problem involves articulating these consequences to whomever the doctor calls. Ultrasound in hand, the doctor calls the possessor of the womb that is carrying a fetus that displays an apparent abnormality. The doctor gives a partial diagnosis by regarding the abnormality as caused by something, for example, a faulty genetic configuration. A caused abnormality, even at the microscopic level, grounds the doctor's ability to also provide a prognosis – this fetus represents something mentally or physically shortchanged. At this point in the text, not only has the fetus been interpretively transformed into a child, but also a clue of abnormality has been transformed into a living-lack. This prognosis is related to medicine's "social vocation" to determine where embodied differences fit and where they do not (Rose, 1994, p.52).

It seems easy not to be startled by the text's radical movement from a description of the technological traces of a microscopic abnormality to the depiction of a child's form of life: a disabled one, a shortchanged one, a devalued one. Moving from an image of abnormal body parts to the imagining of an entire shortchanged form of life and its life-course are presented within Philip's text as normal-facts and not as a decision based upon an interpretive relation to disability. But still, there is no mention of the system or of any other social context. While the title "Victims of Love" may haunt the text, it is not yet a manifest issue. There are, however, the beginnings of a cost/benefit analysis regarding faulty genes. The reader is given a not-so-mysterious articulation of disability: It is a "simple biological mistake;" a troublesome thing; it exists in and of it self; disability becomes that thing that renders the lives of some people shortchanged. Nonetheless, the medical mystery continues to reside in the yet undetermined prognosis – just how shortchanged is this fetus? According to the text, this mystery can be solved by an amniocentesis test.

That a medical test can be used to foretell life-chances, or forms of life, makes sense only insofar as both the reader and writer conform to a set of taken-for-granted beliefs. Both reader and writer must accept the efficacy of such tests; both must believe in and expect a straightforward equation between type of disability and type of life; both must subscribe to the belief that disability is a fluke condition of a nameable type within which there are few variations. The primary shared belief required of readers and one actualized by the text is that a named problem condition is not merely a prediction of a form of life, but is also a reasonable depiction of a life conditioned by such problems. A belief in the efficacy of medical tests on women's bodies and fetuses to reveal not only problems but forms of life is, as Ruth Hubbard (1997, p. 197ff) argues, empirically questionable and even fallacious. Moreover, such tests are completely unable to foretell what others will make of embodied human differences. In the Philip story, disability is made to appear as a problem-condition not only found, diagnosed, and treated by technology, but also as a way of being, the meaning of which is clarified by medicine – disability is rendered as a life which is abnormal and shortchanged, and of little value. All this meaning is being made under the technologically enhanced illusion that disability is unrelated to human interpretation. The clarification of these meanings becomes part of the doctor's call.

It is, say Janet Price and Margrit Shildrick, "The enduring power and authority of biomedicine to reproduce bodies as predictable collections of matter, fixed and held in place by empirical scientific analysis ..." (1999, p. 147). Within the realm of new reproductive technologies "fixing" (as in remedy) is usually not a viable option and is not a justifiable ground for medical authority. For example, prenatal surgery, opening the pregnant woman's uterus (hysteronomy), partially removing and operating on the fetus, and then putting the fetus back into the womb is a newly emerging field within medicine accompanied by a high risk of death for the fetus. According to Monica Casper (1998, pp. 28, 29ff, her emphasis), "[a]pproximately half of the fetuses that undergo treatment die, while those who live are unlikely ever to be fully healthy and always require postnatal treatment of some kind."

However, "fixing," in the sense of pinning down with precise specificity a type of problem, is something that medicine can do. The mass media news reports daily on one genetic "break through" after another, and most such breakthroughs are operative only at the diagnostic level (Albert 2001; Fitzgerald, 1998; Fortun, 2002; Melzer et al., 2002; Rapp, et al., 2002; Rapp 2000). This ever-developing ability to pin down (fix) a specific problem provides justification of medicine's authoritative ability to name the condition, to claim the condition as some-thing wholly within the purview of medicine, and to impart to medicine the power to slip from saying "what" the problem is, to describing what the problem means. Rose Braidotti (1997, pp. 72 - 73) describes this expanding field of medical meaning-making as a " ... practice that consists in deciphering the body, transforming the organism into a text to be read and interpreted by the medical gaze." Deciphering, transforming, and interpreting the problem-matter are practices animated, according to Braidotti (1997), by an unexamined belief in the perfectibility of the living organism and the gradual and eventual abolition of anomalies. These practices are enabled by an unquestioned belief in technology as merely finding "what is there" while not regarding technology as defining the way in which people imagine, confront, and trace differences.

The text governs our consciousness embodiment (Titchkosky, 2003b, 2002; Pratt & Valverde, 2002; Foucault, 1988, p. 16ff). Writer and reader can govern their relation to disability by the understanding that disability is an objectively given lack that is assembled as if it is completely unrelated to the symbolic realm of social meaning – unrelated to systems that offer poor supports, unrelated to medical techniques and knowledge, and unrelated to alternative interpretations that might be held by pregnant women or parents.

Governing Objectivity and Subjectivity
The yet un-named but objectified problem reported by Philip, unencumbered by any mention of a woman's body, or an actual doctor, is made to exist on its own, and made to appear completely within the purview of medical technology, practices, and beliefs. But when the doctor calls, she or he calls a woman to whom this problem apparently belongs, and the meaning of disability expands well beyond the issues of diagnosis and prognosis.

Adela Crossley searched her soul. Her first child, Jason, was a strapping boy who seldom fell ill. If her second child turned out to be cursed with a debilitating genetic defect, would she opt for an abortion?

No, she decided, "Francine was conceived in love." Adela, 34, now says, "and we loved her with all our hearts even before she was born. The fact she was born disabled, didn't make her any less of a child." She refused the amnio, leaving the doctors to shake their heads as successive ultrasounds revealed every more starkly the subtle deformities of a fetus with a severe chromosomal disorder.

Crossley must be the bodily container (Purdy, 1990) upon which the ultrasound was performed and who will be delivered the diagnosis, prognosis, and treatment issues that accompany a medical noticing of abnormal fetal development – she will be delivered the issues of deformity, disorder, defect, and disability. Adela Crossley is whom the doctor, of unknown gender, name, experience, or place, has called. The disembodied doctor (objectivity) calls the embodied and socially located woman (subjectivity) who possesses the womb that carries a problem in order to recommend further examinations.

Whatever Crossley's lived actuality of this complex event might have been, it serves in the text to introduce the soul-searching problem of cultural interpretations of health and illness, disability and ability, anomaly and normality as they emerge and take place in and on women. Here illness becomes falling and disability a curse that is located in a context described only as a mother's love. As much as a cliché as this sounds, Crossley becomes the occasion to articulate complex and messy interpretive relations between disability (all that is bad and not strappingly normal) and women as the subjects who bare this objective wrong. "The fact she was born disabled, didn't make her any less of a child." Child and disability are separated and somehow this separation, like the medical separation between fetus and woman, makes sense. Crossley is depicted as splitting disability and personhood and, on the basis of this split, all sorts of other soul searching considerations enter into the meaning of disability. Many Disability Studies scholars theorize the meaning of the split between personhood and disability (Corker & Shakespeare, 2002; Corker 2001; 1998; Michalko 2002; Overboe 1998; Titchkosky, 2001). The neater technologically enhanced medical distinction between normal and abnormal conditions, resulting in functional or shortchanged lives, becomes messy and unclear upon the advent of an imagined personhood whose meaning inevitably exceeds the sensibility offered by medical discourse.

Regarding the fetus as "Francine" or regarding it as "severe chromosomal disorder" requires human acts of interpretation. The act of imagining the future child readily displays the image's human origin. Imagining the fetus as "Francine" displays the context of interpretive decisiveness by making reference to institutions such as motherhood, to orientations such as love, and to situations such as age, gender, and a family nexus. The act of imagining the fetus as "severe chromosomal disorder" represses its own decisive character and requires a form of imagination able to abstract how it sees from what it sees. In the text, "Crossely" functions as a set of interpretive relations that brings out the decisive character behind any act of noticing or treating disability.

Orienting to the medical meaning of disability as if it is both "natural" and "objective," conceals medicine's active interpretive relation to disability and makes Crossely appear all the more troublesome, indeed mistaken, in her thoroughly subjectivized stance. Crossely's reasoning seems attached only to a surfeit of subjectivity – "love." She refuses to regard the ultrasound's sound version of the fetus as something that can be totally contained by a medical conception of disability as organic lack of function and abnormality. In the process of intersecting with extra-medical institutions and contexts (such as motherhood) the diagnosis, prognosis, and treatment of disability become more complex. But, like the doctors, readers are positioned so as to only shake their heads at Crossely's overly subjectivized stance. The juxtaposition of the singular patient, saturated with her own subjectivity, and the many doctors, abstracted from any form of subjectivity beyond their function, provides the reader with a sense of the woman's decision as strange – Crossley will knowingly birth a disabled fetus. Moreover, she is humanizing that which medicine insists is best regarded as a departure from humanity. That this appears unruly and even monstrous is steeped in an understanding of woman as dangerous; woman blurs and confounds the clear cut categories of self and other especially in matters of maternity. Margrit Shildrick explicates the mother/other/monster cultural conceptions and shows how mothers "as a highly discursive category, have often represented both the best hopes and the worst fears of societies faced with an intuitive sense of their own instability vulnerabilities" (p. 30).

The tacit meaning of "Victims of Love" now begins to crystallize. Some fetuses are cursed by a faulty genetic make-up. Technology is heralded as merely discovering this curse. Undoing this curse is difficult because the problem is in fetuses at the microscopic level manifesting in clenched fists, in missing arteries, in deformities, deviations, and disorders. Currently, elimination of such fetuses is the only sure medical treatment. But, there are times when the curse is not undone. Because of some women's failure to be mastered by the call of medicine they are victimized by their own (subjective) orientation toward pregnancy and thus the healthy management of an orderly and normal life is put at risk. A second level of victimization then emerges as the fetus is forced to live with its curse because of the mother's decisions. Under the medicalization of life, mistaken or risky bodies are made manifest as lives victimized by an impaired sensibility, a sensibility unable to fully subject itself to the ruling authority of the day. A third level of victimization lies in this: The birth of such a being is the birth of a shortchanged life in regards to which both parent and medicine will have to offer compensatory measures. If we do not heed the call of medicine and willingly submit to it as the best way to order our lives, we all pay for it in the end. The price we pay in not accepting our subjectitude serves to remind all that a renewed acceptance of the medicalization of life is rational, necessary, normal, and good.

The story of this victimage continues:

Francine Crossley was born with an enormous bump on the side of her head and a floppy rag doll of a body weighing little more than four pounds. In seconds, she was in the intensive-care ward, where three days later she was diagnosed with Trisomy-18, which medical texts describe as "incompatible with life." Most babies die before their first birthdays, the victims of heart failure or an infection their faulty immune systems are helpless to fight.

"The pediatrician told us she was going to be extremely disabled mentally and physically to the point that she would not know us," Adela recalls. "Her quality of life would be impaired significantly and most likely, she would never walk or talk."

Adela Crossely, victimized by her own decision to not allow medicine to order her relation to her pregnancy, has become mother to a mistake. In the text, this mistake is fully enunciated by medical discourse – the infant "was diagnosed with Trisomy-18, which medical texts describe as 'incompatible with life.'" This is a big mistake since Francine is so short-changed by her genes, and her mother's decision not to seek treatment, that Francine's rare condition is described as incompatible with life. Francine's "quality of life" is deemed to be impaired by her form of life. The life that is incompatible with life is the one that medical technology must now treat and attempt to save.

Francine is thus encapsulated by her condition. Symptoms: a huge bump on the side of her head, a rag doll body, and a low birth weight. Diagnosis: Trisomy 18. Treatment: intensive care. Prognosis: extreme mental and physical disability leading to the constitution of a child whose most notable features are that she will never recognize her parents, never walk, and never talk. Francine is defined via her departures from, even negations of, normalcy. This all seems dramatic. However, Francine is defined via the most common, normal, and ordinary definition of disability – negative biological lack causing personal limits and a life of abnormalcy.

Excessive Female Subjectivity and Medical Heroics

I have analyzed in sequential order the first part of "Of Human Bondage: How the System Martyrs Parents of Disabled Kids," written by Margaret Philip. The introduction of this part of the text comes to a close with the visual aid of three diamond-shaped dots. In newspapers, such dots typically signifying a shift within a text and provide the reader with a sign that some space or distance lies between what has come before and what is to follow. The reading of any text is layered with meanings produced out of the interaction of what comes before in a text and what comes after, and vice versa. While readers may imagine that these victims of love will now be discussed in relation to how the system fails to assist them with their cares and woes, this is not what occurs. It does not occur since, it turns out, the introductory story of medical technological heroics as this interacts with women and embodiment is not yet done. Thus, the social support system and its failures will not be introduced for yet another four paragraphs. Instead, we are informed that

The decision by so many women to delay having children and the onward march of medical science has resulted in a dramatic growth in the number of children born with severe disabilities.

Statistics Canada found in 1999 that 3.1 million people – 12.5 percent of the population over the age of 12 – suffered from a "long-term disability or handicap," compared with 2.85 million or 11.6 per cent just two years earlier. In 1996, the National Longitudinal Survey of Children and Youth found that 436, 000 youngsters – 9.3 per cent of the population – where regarded as having special needs, from a learning disability to something as severe as a debilitating degenerative disease.

These are just estimates. Even the expert data collectors at Statscan [Statistics Canada] won't have a solid figure until they see the results from a major survey on the subject conducted as part of last year's national census.

But it's no secret that delivery room heroics now save thousands of disabled babies who once died shortly after birth. They also are creating a population of shell-shocked parents stunned to discover that, when it comes to rearing such children, they are largely on their own.

Following the diamond-shaped dots, and six paragraphs into the account, readers discover that this is not really a story about Crossley and Francine. Mother and child are merely one case within a larger, troubling, and troubled, population. They are one of 3.1 million of Canada's entire population of approximately 31 million. The story of Adela Crossely's giving birth to a child with a rare form of impairment is transformed by the text into something not rare but typical. Crossley's story is made into a representation of the general population of parents with disabled children. The population of concern is women who have made decisions to delay having children and in their decisiveness are the producers of a highly problematic population. Women are thus depicted as victims of their own undisciplined desires and in the wake of this excessiveness, women become the producers of many more victims.

Philip now uses both statistics and medicalized discourse to deliver to the reader the sense that some women, far too many, are unwittingly giving birth to disabled children and this is partly caused by medicine's technological efficacy and partly caused by women who fail to take medical advice due to their superfluous subjectivity.

Thus, the story of interest becomes – "The decision by so many women to delay ... " Women's decisions, already represented through details of Crossley's thoroughly subjective stance, are combined with the "onward march of medical science," already represented as authoritative, rational, and progressive. The product of this combination, especially if women fail to listen to the call of medicine, or fail to avail themselves of the latest technological advancement, is a "dramatic growth in the number of children born with severe disabilities."

The article is making the claim that within the span of two years, the population of disabled children grew by a quarter million. Philip's particular use of statistics transforms systemic failure into natural short-coming. Systemic failure, if it can be understood as caused, not by the system, but rather by the "dramatic growth in the number of children born with severe disabilities," is no longer a political issue, because what system could be expected to be prepared for such a dramatic growth? The incredible rise in the disability rate, and not the failure of systems of support for parents, is what has become the stunning news.

A reasonably critical reader will notice how this empirical rendering of disability and women is, frankly, warped. It is inappropriate for Philip to use the statistical rendering of a general disability rate for an age group over 12 as a way to provide proof for a "dramatic increase in the number of children born with severe disabilities." There is no reasonable correlation between those two sets of truth claims. There is something disturbing about moving so easily from disease to disability, from special needs to learning disabilities to severely debilitating conditions, all of which seem steeped in an unexamined assumption that the body-gone-wrong is clear and obvious to anyone regardless of definition and regardless of social context. Despite the fallacious statistical presentation of disability by Philip, much has been communicated about the imagined nature of the problem of disability as it is related to woman-as-problem. Through drawing upon the ruling relations of state-sponsored bureaucratic ordering of populations into discernable types (Smith, 1990), disability becomes simply an objective departure from normalcy, noticeably clear and certain for some agencies to count. The discursive regime that organizes the appearance of disability as objectively problematic remains untouched by questions. The only question that Philip's article raises is that of the actual extent of the problem. 12.5%, 11.6%, 9.3%, etc., are "just estimates" and thus we are encouraged to await the "expert data collectors at Statscan" to tell us if the solid figure of disability as a major problem is even worse than we first imagined (estimated). If so, surely the surfeit of subjectivity that is woman will require a stronger form of governance.

The shift, indicated by the three dots and the move into the delineation of a population of women producing disability represents the final medicalized account. The dramatic depiction of Crossley's decision to give birth to Francine, a particular child, does the work of preparing the reader to accept the truth-claim that the birth of disability in general is just as dramatically disturbing as are the dramatically increasing numbers of disabled youngsters. Disability transmogrified as matter gone wrong helps to produce and is produced by women regarded as those who make things matter wrongly. In the words of Merleau-Ponty (1964, p. 98), "Every science secretes an ontology; every ontology anticipates a body of knowledge." Our ways of knowing, including technology, organize ways of being and being a woman seems particularly subject to the necessity of knowing if we are going to manage Her excessiveness.

The Crossroads of Women and Disability

Through this analysis of a newspaper text, I have aimed to reveal at least two sciences and at least two ways of being in the world that these sciences presuppose and require. There is the way of knowing bodies, mothers, and anomalies that is produced by the discourse organized under the auspices of medicine. This way of knowing "secretes" disability as a being (ontology) the characteristic feature of which is devalued-difference produced by and producing abnormalcy. This way of constructing disability anticipates the knowledge that women who willingly give birth to disability are not only derelict in their duty, but monstrously mistaken in their choices. This way of knowing is so certain in its understanding of disability that it can only shake its head, flabbergasted, at those who dare exercise women's right to choose in the face of disability. As authoritatively hegemonic as this way of knowing is, my current analysis of the newspaper text both presupposes and demonstrates that there are alternatives ways of coming to know embodiment.

My alternative way of knowing (steeped in hermeneutics) begins from the assumption that there are, in fact, a plurality of ways of developing relations with bodies, mothers, and anomalies and that all ways, even medicine's, involves interpretive decisions and ontological commitments. 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. These interpretations were drawn out and analyzed. Despite conflict and messiness, this more reflective way of knowing attempts to understand all stories and all truth-claims as engaged in and accomplished through the social action of interpretation and secretes an understanding of readers and writers as meaning makers. As such, readers can read their readings and thereby provide for the reflexive space that arises upon establishing the possibility of alternative or plural interpretations.

In the face of texts, we as readers exemplify the dynamic interchange among the text, the context of reading, and our effective histories as readers (Gadamer, 1996; 1986). Moreover, that which conditions the text's existence as a sensible cultural object lies in-between all the words the text deploys in order to communicate its message and the possible orientations we can take to the flashes of meaning released though the text's organization. Texts are read by people located somewhere and this gives rise to a variety of consequences one of which is, as Dorothy Smith (1999:214) shows, the risk of capture by the dominant discourses of the day. If every act of reading risks capture, then attending to the act of reading may be a way to resist such capture. Texts call out for us to be certain kinds of readers, they act upon our consciousness in the act of reading itself, organizing and governing what we may and may not come to know. This holds true for the medical mystery as much as it does for any other genre.

As I demonstrated, the mystery of interest for medicine is this: What are the problems generated by the problem that is disability? The newspaper narrative contained an answer: Disability is a problem that lurks everywhere. Not only does disability lurk in accidents of fate and technological heroics, it lurks under, in, and around bodies and, most poignantly, it lurks even in thoughts, desires, and decisions such as those surrounding an interest in bearing a child. Disability, we are told, is only the body gone wrong, it is nothing in itself but a lurking haunted under-life. It is not an appropriate way of being in the world. The mystery has been solved.

Disability as the devalued under-life of all the worthy and valued aspects of life comes with a further detrimental consequence. Disability, like all other forms of human life, is born of woman. Woman is responsible, yet again. Today, disability is born of woman either because of her uncontrolled and unreasonable relation to the fetus or because of her "natural" ignorance. Had she known, had she considered the risks, had she had the tests, had she had a few more tests, had we been better able to contain her, disability would not be born. "But it is not simply that the feminine is presented only as a lack ... it is also the site of an unruly excess that must be repressed" (Shildrick, 2002, p. 105). Perplexing still, woman is imagined as able to respond to (e.g. love) this devalued under-life, thereby putting into question woman's own tie to a reasonable version of humanity. Woman's lack is nonetheless clenched by her own surfeit of subjectivity and thus technoscience always needs to recover its hold on her. Perhaps the story of the birth of a life incompatible with life, discovered and saved by medical technology, is a way to re-achieve this hold.

But there is the alternative reading, one that posits and assumes a different ontology, a different way of being. Disability here is that alternative self-reflective space where we confront not the "true nature" of embodiment but the "true character" of all that our culture can make of embodiment. Disability here has served as an opportunity to examine how technoscience discourse can imagine and manage human difference. Disability, as the despised under-figure of a "natural and normal" body becomes the discursive space where we confront culture as it makes our embodied possibilities out of the limits that it has constructed disability and women to be.


Many thanks to the members of the "I've Had It!" student reading group at St. Francis Xavier University for bringing this work into provocative discussion.


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