Institutionalising Disability Studies: Research Methodologies and the Quandary of Over- Analysed Populations

The “hard light” of Science

People with disabilities recognize the oppressive force of diagnosis and evaluation all too viscerally for many have spent their lives beneath the judgmental surveillance of medicine and rehabilitation. For instance, during lectures to medical students we often ask how many know the empirical classifications for cognitive disabilities at the turn of the century. No medical students ever seem to know the answer to this question because, as the intellectual historian John Limon argues, medicine (like all science) tends to cannibalise its own past in the name of progress (1990: 9). When we explain that the accurate answer is “idiot, imbecile, moron, and subnormal (with moron and subnormal existing at the more ‘advanced’ end of the spectrum),” medical students act either amazed or embarrassedly amused. Even without knowing the historical etymology of these words as diagnoses, they are all quite familiar with the terms for having used them to taunt and torment their friends, enemies, and classmates on the playground years prior to their arrival at medical school (or, perhaps even more likely, were tormented by the terms themselves). But the point is that medical terminology of this sort is not value neutral and often reflects the prejudices (and even disgust) of those who purvey such classifications as knowledge.

Empiricism, as the British historian of feral children, Michael Newton, has argued, often recognizes itself as counteracting the romanticized perspectives of literature and art by foregrounding the “hard facts” of difference. Rather than endorse the Romantic’s conception of childhood as proximity to Nature and unadulterated sensation, empiricist practices of the 19^th century sought to unveil the devastation of communication and processing “disorders” associated with the savagery of feral children:

[According to behavioural science] the state of nature was not magical, attractive or beautiful: it was a state of vacuity and barbarism, an empty, ugly and unmeaning condition of entrapment (112).

The feral child was closer to Nature than modern scientific man (sic) with his artificial instruments of measurement and a dawning, but that proximity was recognized as a throwback to an earlier “primitive” state of human consciousness. The classification of a feral child positioned those as “locked in mental darkness” as a form of human “pre-history” that must be accessed by science, and therefore, conquered.

In this sense, we see a complicity of the science of disability in mistaking derogatory terminology with the “hard light of Truth.” Such practices essentially subsume bodies existing along a continuum of biologically based differences into a dehumanising narrative that then references the bodies in question as “proof” of their own deviancy. As Michael Berube argues, we now have a lengthy tradition of medical textbook images that used degrading photos of institutionalised individuals buried facedown in plates of food as the prevailing representation of Down’s Syndrome. Thus, pathology is accorded a correlative image sufficient to emphasize an extreme degree of deviance and the different bodies of disabled people are used to justify the condemnation at work in dehumanising classifications. We might make an analysis of medical representations of disability in instances such as this akin to that of British philosopher John Berger’s discussion of paintings of nude women in the tradition of “Vanity:”

You painted a naked woman because you enjoyed looking at her, you put a mirror in her hand and you called the painting Vanity, thus morally condemning the woman whose nakedness you had depicted for your own pleasure. The real function of the mirror was otherwise. It was to make the woman connive in treating herself as, first and foremost, a sight (1995: 51).

Here the political practice of portraiture is recognized as an expression of the painter’s prurient desires that are then deflected by placing a mirror into the object’s hand and titling the painting, “Vanity.” Such a representational strategy turns the female nude into a victim of her own narcissism. As medical historian Barbara Maria Stafford (1994) points out, medicine needs to construct difference as grotesque deviance because it is obsessed with the non-standardized body as a foil to normativity. Science publicly positions itself as the champion of homogeneity and norms while its obsession with human “imperfection” underwrites the entire system. In Stafford’s words, medicine’s obsession with the………concealment or display of stigmatisation…is about the fascination with…making seen the unseen, fragmentary self (1994: 283). This act of using a diminished object to “speak” its own condemnation was one of the primary weapons employed by European and American eugenicists at the turn of the century when they degraded their institutionalised charges by projecting a state of mind for those who occupied the status of "human waste" (Anderson, 1919: 9). The life of a feebleminded individual was constructed as one in which ‘it would be better both for him and for society had he never been born (Goddard, 1914: 558).

According to eugenicists, feebleminded individuals lacked a degree of sense that’ Comprises a group of children who are no comfort to themselves and no comfort to their parents or caretakers’ (Goddard, "Elimination": 505). This projection of a defining lack of pleasure proved critical in that it was presented as capturing a state of mind that accurately characterized the perspective of those with disabilities about their own lives. Eugenic science mis-recognized dehumanising descriptions as the signifier of hard science in its efforts to debase the research object. Our own medical terminology today suffers from this collusion of classification and debasement in a range of research practices from efforts to colonize genes and disorders with the names of their medical “discoverers” to the persistent use of the Greek and Latin nomenclature of teratology that suggest exotic grotesqueries.

Ready-made Laboratories

The license to mistake dehumanising research practices toward disability with the application of a rigorous empiricism took shape in the wake of the development of training schools in Europe and the United States. Beginning in the late eighteenth century in France as a result of Itard’s unsuccessful efforts to “civilize” the Wild Boy of Aveyron, training schools recognized people with cognitive disabilities as those who “suffered from a defective will”. The ability to successfully train the “subnormal” into more fully cognizant citizens depended on their custodial institutionalisations. Institutionalisation in the West was established based on the principle of round-the-clock corrective techniques that aimed at transforming the “weak willed” into a proper moral, modern subject.

Read into the daily schedules of the earliest training schools for idiots (later the feebleminded) and one immediately recognizes the earliest outlines of mandatory, formalized public education - a day of timed and regimented activities that strip subjects of choice in the name of routinization. The training school schedule created a disciplinary form where content was routed by increments of time-based practices; from combing one’s hair to brushing one’s teeth to meal times to gait training exercises, the training school regulated one’s day in units as small as ten minute intervals from beginning to end with an average of an hour and a half set aside for “academics.” What this regimen targeted was the cultivation of hygienic citizens with the majority of activities situated around turning the body into an object of continuous care and upkeep. What a diagnosis of “idiocy” delivered one into was a domain of self-care where the body was transformed into an object (or, in Foucault’s terms a techné) upon which the subject’s attention was trained. The body came to be increasingly alienated from individual self-definition, and disability metamorphosed into a full-time job where the “care of the self” became an expectation and an obligation that occupied the bulk of activities for institutionalised subjects. As one resident wrote in a letter during her incarceration at the Orthopaedic Institution for the Cure of Deformities in Brooklyn, New York in 1855:

I hope, dear cousin, you won't wait for me to get cured, before you come on because though it may take a good while, yet every one is quite certain that I will be straitened up, and it will be so nice to have you here. You asked me to tell you the mode of treatment - that I received - it is very simple indeed; at present I do nothing more than take gymnastic exercises every day . . . (Lizzie Jones, 1855).

By establishing the training of one’s body as the locus of one’s universe, institutions consciously narrowed the scope of interests of their charges by collapsing their worldviews in upon themselves as an object of normalization. The production of investment in one’s own body – never the body of others as this was primary taboo in institutions that sought to restrict sexual appetites and reproductive capacities – traded a universe of relations for the recognition of one’s body as an all encompassing centre of attention. One recognized oneself as the object of an internalised medical gaze that mimicked the scrutiny of the medical and administrative practitioners themselves. The self-consciousness produced in the observed subject ultimately over-determines one’s own practices as supplementary to institutional surveillance. One is transformed into the object of a therapeutic regime practiced on oneself. In other words, the medical observer is within. Yet, the formation of this ever-vigilant self-care regimen found its origins in the promotional efforts of training schools to encourage researchers and teachers of “defectives” to recognize the institution as a unique opportunity for the forwarding of their own professional careers.

In the United States, one finds myriad advertisements such as the one depicted here as an enticement for would-be disability experts to ply their trade on the bodies of incarcerated individuals. While the earliest institutions were run as pastoral rehabilitation “get-aways” where “afflicted individuals” would go to recuperate from the stresses of rapid industrialization under Capitalism, the identification of institutions as laboratories with ready-made research populations slowly precipitated the transition from temporary to permanent facilities. School teachers of the feebleminded would enrol in summer institutes to learn pedagogical techniques for training “defectives;” social workers would frequent institutionalised charges while developing elaborate “pedigree charts” that traced back family histories to prove hereditary lines of transmission for “defects”; psychologists and psychiatrists studied “abnormal” behavioural patterns as a key to the development of human psychological theories; public health workers provided tours to legislators and other government officials to secure funding for public hygiene campaigns and policy initiatives such as restrictive immigration, permanent institutionalisation, and coerced sterilization – all successful eugenics campaigns in the U.S. and many European countries; physical and occupational therapists developed therapeutic regimens that would be exported to public school systems where those suspected of being feebleminded would be educated in segregated classrooms until they became of institutionalizable age (i.e. 13 years old). The institution became a locus for a surfeit of attention of newly professionalizing fields that today continue to oversee and manage the lives of people with disabilities. This concentration of attention, experimentation, and oversight at training schools and institutions provided a blueprint for what Foucault has called “the constraint of total education:

One can imagine the power of education which, not only in a day, but in the succession of days and even years, may regulate for man (sic) the time of waking and sleeping, of activity and rest, the number and duration of meals, the quality and ration of food, the nature and product of labour, the time of prayer, the use of speech and even, so to speak, that of thought, that education which, in the short, simple journeys . . . [that regulate] the movements of the body, and even in moments of rest, determines the use of time, the time-table, this education, which, in short, takes possession of man (sic) as a whole, of all the physical and moral faculties that are in him and of the time in which he is himself (1995: 236).

While Foucault developed this analysis of the exhaustion of time as the principle function of a regulated prison society, disability studies need to recognize this practice as one that translates into an analysis of modern-day oppression for those with physical, sensory, and cognitive differences. In fact, Foucault overlooks training schools and institutions for the feebleminded as critical vehicles for his own formulations. One finds perhaps even a better example of this depletion of individual control in institutions where disabled people were charged with the absorption of their lives in the performance of a host of insignificant tasks. The banal nature of these occupations in the institutions led to no other goal than the effort to make residents suitable for little more than a life of institutionalisation.

Since those classified as feebleminded were found to be outpaced by the speed and complexity of modern life, the institution sought to establish a routine that mimicked aspects of life outside its walls minus the liberty of its residents and at a pace that it controlled. Eugenic institutions excelled at strategies for the exhaustion of time on behalf of “the interests of those whose minds have not developed normally.” Subsidized by massive state and local grants, training schools and institutions for the feebleminded promised a space for “the study, care and training of mentally deficient children” who were depicted in workshop-like settings, sawing, hammering, and building. The implications of representations such as these suggest that training schools prepared its wards for a productive life; in reality, the release rate diminished as the practice of institutionalisation grew, and the institutional denizens found themselves trapped in a permanently circumscribed restrictive locale. Residents would find themselves subject to random experiments and perpetual testing exercises that used up their time, strength, and, most importantly, their aspirations for a return to the everyday world.

Curiously, in nearly every advertisement for the training school as an educational alternative for “defective children,” one also witnesses mention of “research laboratories” and a “thoroughly equipped School Department.” The training schools provided an optimum level of access to a permanent research pool of individuals with disabilities. This relatively unfettered access to the “subnormal and deficient” helped to create institutions into a cause worth fighting for in the eyes of researchers. As the U.S. documentary filmmaker Fred Wiseman demonstrates in his series entitled, ‘Multi-handicapped’, the eugenics-based institution continues to thrive on formulas of rote repetition, a debased manual labour pool, and the depletion of time based on the incessant practices of observation, assessment, disability hierarchy, intense differentiation, judgment, and punishment. What is evidenced most viscerally in these depictions of modern institutionalisation are the ways in which residents find themselves trapped in a life of busy work and evaluation that translates into no discernible value for themselves while a bevy of non-disabled professionals pursue careers at their expense. In Wiseman’s series we watch as residents perform repetitious activities aimed at the improvement of small motor control such as facecloth folding, putting pegs into holes, and telling time. The modern day disability curriculum perpetuates the nineteenth century training school regime by filling up the days of its residents with a pure mechanics of control. Severe regulation of activity translates into “severe disability” where researchers, teachers, and administrators mistake diminished practices for diminished capacities.

The modern day academy is, in many ways, an outgrowth of these early efforts to secure human beings for studies on the normalization of disability, the consolidation of new classifications and taxonomies of difference, the transmission and etiologies of deviance, and even the social context of their navigation. People with disabilities continue to be targeted for an array of research programs that continue to disregard the value of their time and energy in the name of advancing their personal and social well-being. We are the inheritors of this research legacy and stand to reproduce it even in the name of the liberation of people with disabilities.

Institutionalizing Disability Studies

In keeping with this analysis, Foucault ultimately extended his criticism to the academy for participating in the post-Enlightenment press of developing research data that will deliver a tangible - even politicised - knowledge of bodies and their attendant pathologies to the "light" of academic disciplines. All of this has a bearing for disability research practices today devoted to the administration of disability in higher education and the attendant development of research strategies. Those of us who are setting out or, in some cases, continuing to oversee the development of the study of disability and Disability Studies (two inherently different tasks I would argue) must ask the following question of ourselves: How can we cultivate and continue to pursue research about disability without further subjugating an overanalysed and diagnosed population? Can Disability Studies and the study of disability pursue work without further contributing to the oppression of those bodies that researchers seek to know and assess? What lessons must we take from a history of “people-based research practices” performed in the name of their best interests?

This is a profoundly important question and one that disability venues such as this symposium and university faculty developing disability-based courses and programs need to take up in a forthright and meaningful way. Disability communities also need to help police the university in relation to its penchant for over assessment and the rampant disregard of disabled peoples’ time and energies. The university must also recognize that disabled peoples’ information provides a privileged access to vital and unique perspectives; thus, like other researched groups there needs to be an end to access to this body of information without compensation for subjects. By way of providing a quick overview of the problems that disability research practices face today, I would like to forward a series of instances from the contemporary institutionalisation of disability as an area of academic inquiry. These examples represent a way to envision our project more fully and seriously if we can continue to champion the continuing study of disability in an ethical manner.

The Ph.D. program in Disability Studies is located in the College of Applied Health Sciences and hosted by the Departments of Disability and Human Development, Occupational Therapy, and Physical Therapy. To situate Disability Studies within such intimacy to the rehabilitation sciences is to automatically bring questions of impairment into the realm of a field that, at least in Britain, has purposefully cordoned off functionality, aesthetics, and biology as appropriate objects of disability studies analysis. For instance, Michael Oliver has argued adamantly for the ouster of impairment from disability studies: Disability is exclusively social . . . disability [has] nothing to do with the body. It is a consequence of social oppression (1996: 206).

Likewise, Jenny Morris has argued that the social model of disability most often associated as the paradigm of disability studies specifically targets social discrimination and “people-made” obstacles as the appropriate intervention contexts for scholars in the field: the whole focus on research [in the social model of disability] is shifted when the issue under examination is not impairment but disabling barriers (2001: 4).

By situating disability studies in the health sciences the Ph.D. program at UIC automatically violates this injunction with regard to impairment. Impairment – or characteristics linked to an underlying physiological deficit that prevent a person from performing (or appearing) typically – is very much part of the analytical terrain that U.S. models of disability studies take up. By and large, the study of impairment continues in medicine and the therapies as an objectifying practice with respect to the designation of disability as pathology; however, in U.S. Disability Studies the study of impairment provides a fulcrum for critique as a critical nexus that allows scholars opportunities to undermine claims to empiricism in the therapeutic and medical sciences. For instance, we just completed an essay on “disability as political subjectivity” published in Disability & Society that features the exposés of clinical and therapeutic sciences by workers in those fields who later converted to Disability Studies. This address of impairment is not intended to further entrench bodies as deviant, but rather to illuminate the ways in which disabled bodies and disability-identified researchers provide new perspectives on the world.

In addition to the critical perspectives of those who have worked inside the disability sciences, Disability Studies also recognizes the importance of providing venues for the articulation of disability experiences and theories by people with disabilities now seeking to professionalize at the highest levels of the academy. Since point of view is tied to the sources of stimuli that bodies use to receive, organize, and interpret data, impairments are not solely sources of bodily limitation; they also act as a conduit for the world comprehended in and through the bodies of people with disabilities. For instance, there has been some significant work on disability as a phenomenological experience, where sensory disabilities, for instance, have provided a means by which to contemplate what Mairian Corker has termed “sensibility”:

Sensibility engenders ways of being in and knowing our world that are materialized in contradictory bodies in process, and performed in shifting aesthetic, ethical, and political values . . . seeing, hearing, smelling, tasting – is formed of a union of the senses to the point where they often seem indistinguishable (2001:41).

The humanities have also analysed the significant influence of disability on artistic expression such as in the cases disabled of artists and writers such as Alexander Pope, Lord Byron, Vincent Van Gogh, Pablo Picasso, Frida Kahlo, and Flannery O’ Connor. Phenomenologically based studies have proved valuable in a revaluation of disability subjectivity as informing unique worldviews. They have also provided entry into a new theorization of impairment without rectifying notions of incapacity. These represent potent disability studies approaches needed to reconstruct the historical perspectives of disabled people on their own lives and on the societies in which they lived.

Yet, in situating disability studies in close proximity to the rehabilitation sciences, disabled students and faculty inevitably find themselves in awkward situations through their interactions with medically based researchers. For instance, my own dean and other kinesiology/therapy colleagues find it difficult to refrain from suggesting that I would make a good specimen for various impairment studies. They intend this comment as a “compliment,” without recognizing the way that it reproduces disabled people as time-honoured objects of research. One can walk down the halls of the medical schools and clinical rehabilitation programs as a disabled person and find one’s body subject to a series of diagnostic gazes that try to classify one’s body within available taxonomic categories. One’s body is perpetually sized up for quick exercises of medical acumen as if the doctor’s office represents a mobile space that follows disabled people around. A neurologist once asked me if I would be willing to undergo a series of painful tests to re-establish the accuracy of my diagnosis on behalf of her students’ knowledge of rare conditions like mine. I was, as she pointed out, after all a professor presumably invested in the welfare of students’ future careers to “help people like myself.”

Disability studies scholars and students often find themselves having to navigate the hazardous rhetoric of “help” and “fixing” that pervades medical and rehabilitation vocabularies. As one unit administrator commented to me in an email when I challenged his belief that all disabilities resulted in functional impairments (some are purely aesthetic and others belong to the quirky histories on their period I argued):

Impairment is the term used by those who study impairment, so I think it should remain in the terminology without qualification . . . to achieve a balance.

It seems that even in the face of exceptions therapists will have their impairments. To insist on this point makes the language of impairment primary to the study of disability. If disability studies are to revolutionize our approach to human differences, the therapies must surrender their investment in vocabularies of pathology as empirical claims. In many ways the field of disability studies is involved in efforts to re-contextualise bodily variations as part of a diverse continuum of bodily landscapes: in doing so questions of health, functionality, and appearance must no longer be determined with respect to static norms, as if there is a solitary, static baseline from which all bodies diverge to one degree or another. Rather dynamic bodies must be comprehended with respect to their own laws and requirements and an empirical therapeutic or medical science would need to become flexible by assessing bodies with respect to their own individualized standards. For instance, “health” for a wheelchair user on a vent differs from that of someone with a visual impairment who, in turn, differs from someone with epilepsy, etc.

The focus on disability as impairment results in tensions when one places disabled and non-disabled students in the same academic program. In the disability studies Ph.D. program, therapy-based students and faculty have sometimes complained that disabled students make them feel uncomfortable in the classroom because they critique therapies as oppressive to their own sense of self-worth. Such a charge amounts to an argument that the therapies are unfairly maligned by disabled people, but there is little effort to come to terms with why this perspective is so widely shared. One would assume that the modernization of the therapeutic sciences depends on incorporating and responding to the critiques of one time clientele to extant practices. Yet, even in spite of this professed discomfort that results from challenges to the efficacy of practices in the rehabilitation sciences, disabled students in the program are much less likely to complete their course of study. The lower rate of completion among disabled students results from the depletion of their resources because of relatively inaccessible university environments and the demoralization that comes from continuous exposure to the often patronizing ideologies of the “helping professions.”

All of these difficulties and petty humiliations endured by people with disabilities in the academy are the after effects of the fact that universities have been literally set up to exclude disabled people. Historically disabled people have been objects of study but not purveyors of the knowledge base of disability. Because of the fraught history of the relationship between physical, sensory, and cognitive disabilities, universities as institutions that champion “Reason” and “pursuit of life of the mind” have presumed that disability is an automatic disqualifier from participation. The academy finds itself hard pressed to provide physical access, alternative text/communication strategies, and/or altering the pace of its intellectual environment as an accommodation to the creation of newly accepting environments for people with disabilities. Consequently, a continuum of human variations cannot be translated into an investment in the continuum of diversity of thought that such variation represents on most campuses. Particularly with respect to the traditions of knowledge gathered in the health sciences where taxonomies of bodily deviance have claimed the lion’s share of efforts with respect to empirical practices that seek to identify, sort, and classify human differences as variations on the theme of human insufficiencies.

A Cautionary Tale

Yet, I want to conclude this discussion with cautionary tales to those who imagine themselves as participating in new efforts to involve disabled people in research on their own experiences. Even in disability studies we are running the risk of reproducing research methodologies that may contribute to the “exhaustion of people-based research practices.” Research that involves human subjects replicates the oppressive history of time and energy depletion that is one of the primary sources of our subjugation. Even in our press to act “morally” and “with the interests of disabled people in mind,” we cannot afford to mis-recognise the specifics of history. All research on disability has been conducted under similar “ethical” precepts – even eugenicists argued that their work was performed on behalf of the target population as an alleviation of their “problems.” For instance, most eugenic scientists believed that disability was the result of a changing social context. They reasoned that as western countries shifted from agrarian-based economies to capitalist practices of manufacturing and the development of urbanization, people with disabilities found themselves unable to keep up or function successfully in a market-based economy. This argument was made in the late 19^th century and amounted to an understanding of disability based on a “social model”: impairment was less to blame than a new social order of “modern” demands.

However, in order to adjust to this system of labour-based practices, eugenicists recognized the social context as the producer of human insufficiencies but went on to target disabled people as the appropriate object of intervention, so a population of deficient bodies were targeted for rehabilitation and institutionalisation as a remedy to a dehumanising social system. While disability studies has proposed to correct this misidentification by targeting social contexts rather than biologies as the proper domain of intervention, we still turn to disabled people as the fulcrum of this shift in research-based practices. We continue to interview, survey, record, quantify, and assess disability experience without enough attention to whether our practices duplicate the exhaustion of people-based research. In our own unit, I watch social science based research practices marshal in students, community residents, and professionals with disabilities as if this population were an ever-flowing fount of information. Beneath the guise of a “leftist” agenda of disability-identified research practices we still reproduce an intense degree of oppression in the name of a newfound respect for disabled peoples’ input into the bottomless well of our quest for disability knowledge.

We interview children about their experiences in schools; we have multitudes of meetings among people of colour in wheelchairs due to gang violence; we survey our students about the transformational aspects of their work in disability studies; we bring in people with Down Syndrome to participate in bi-weekly physical exercise programs; we perform follow-up interviews with people who have managed releases from nursing homes; we ask families about their frustration with service delivery, inadequate inclusion practices, sibling experiences of growing up with disabled brothers or sisters, attitudes toward disabled family members. In other words, I don’t see the modern disability research industry enacting an appropriate level of restraint with respect to the value of disabled peoples’ pursuit of their own objectives. We are running the risk of reproducing aspects of an oppressive structure that disability studies was expected to correct.

In the U.S. university system, research on disabled people often encounters the obstacle of human subject review boards that delay or prohibit such undertakings. In most cases, the resistance to involving disabled people in even the most progressive research studies centres on issues of informed consent: many human subject review boards refuse to recognize that people with disabilities – particularly youths with disabilities and people with cognitive impairments – can “give consent” to participation in such studies. Such positions result in the continual whittling away of power – even over one’s own personal choices – from people with disabilities as cognisant human beings. Yet, given the glut of research projects that comprise modern life for people with disabilities, one almost has to feel relief that these prohibitions exist. For instance, in my own college I have heard researchers argue that they should receive automatic consent to pursue experimental research on teenagers with terminal cancer because they “will die any way.” We occupy a university context that has few if any restraints on its own practices and sadistic tendencies.

I want to make a last endorsement for the value of humanities-based approaches in disability studies. This area has been significantly overlooked (even disparaged) by many researchers in disability studies because the field has been dominated by the social sciences since its inception. The arguments against the utility of humanities-based approaches are those that have been traditionally levelled at the field. Namely, 1) a lack of pragmatic value to the real-life situations of disabled people; 2) a textually based object that is inherently degraded in its representation of disability; 3) a focus on history that proves irrelevant to the problems of today; 4) an over-emphasis on metaphor. These are important charges that the humanities, almost by their nature, find difficult to refute. In part, this difficulty is because textual research has been devalued in an era that believes “real” knowledge can only be developed within a materialist vein. We still over-value bodies as the primary locus of relevant information – particularly in the case of disability.

But I want to make the heretical claim that textually based analysis is the only absolute remedy to the exhaustion of people-based research practices. Primarily, due to the fact that, no matter what its limitations, a study of text exhausts no one other than the researcher (and, perhaps, the original author). There is a great practicality to approaching disability as an object of study in this manner. In fact, there needs to be a radical research based agenda articulated from this very point of view: since texts provide us access to perspectives that inevitably filter disability through the reigning ideologies of their day, their analysis proves tantamount to turning social beliefs into an object of investigation. Just as disability studies has argued vociferously about the socially constructed nature of disability, we must recognize that texts supply windows onto social contexts for our scrutiny.

Because most people encounter a majority of their interactions with disability in written and visual materials, the analysis of this domain can provide significant interventions into the public representation of bodily, sensory, and cognitive difference. While such an analysis often entails exposing debilitating depictions, this cultural work is necessary and even paramount to influencing the ideological agenda of disability. For instance, the recent release of the film, “Iris”, that details the writer Iris Murdoch’s development of Alzheimer’s, practices the convention of using her youthful life as a nostalgic antithesis to her debilitating later life. Without reference to this earlier “utopian” period, the film suggests that Alzheimer’s cannot locate a complex, human portrayal. The work acts as a commentary on our own time’s obsession with Alzheimer’s as the stripping away of every recognizable “human” feature – particularly when we conflate these symptoms with our debilitating fantasies of old age and dependency. While we can recognize these beliefs in our own everyday lives, the film provides these beliefs within a frame that makes them more readily available for critique. The film, from a disability studies point of view, may be more useful for its exposé of beliefs about Alzheimer’s than Iris Murdoch’s experience. Our obsession with “positive” representations of disability ignores the productive value that less adequate portrayals often provide.

In other words, to some extent we have placed the emphasis incorrectly if we value texts only for their empowering representations of people with disabilities. We should rest assured that our own era’s beliefs about disability will be found wanting in the future, just as the social model is already coming under attack from various quadrants of the disability universe – including disability studies and disability activism. The fact of the matter is that representations are inevitably bound to their own historical moment’s shortcomings, idiosyncrasies, and obsessions, but their analysis does not require the presence of those who might be affected by the portrayal to pursue their meanings, expose their insufficiencies, or recognize the distance placed between bodies and their representations. Disability Studies, like all minority and identity areas of study, must engage the images that function in the spaces of cultural mediation. One of the primary tasks is to cultivate media and textual critics who can intervene in the cultural images of disability that influence our responses and ways of imagining human differences.

The importance of these practices is more pressing – in many ways – than requiring disabled people to continue to subject themselves to the people-based research practices of even the most leftist social agendas. Everyone is exposed to such images, even those who don’t imagine themselves as participating in the glut of disability portrayals that saturate our environment each day. As the media philosopher Michael Ventura argues: “Media is our most immediate environment.”

We exist among media like we exist in the air that we breathe – they pervade our atmosphere and we imbibe them without thinking about the involuntary nature of our intake. Disability Studies must redress our lack of self-consciousness about this process, and, in turn, recognize textual and visual materials as arenas of pragmatic intervention. In assessing representation we analyse our most immediate environment (as well as the attitudinal environments of those who have gone before us); rather than waiting months, years, or decades for policies to be shaped and implemented or longitudinal demographic studies to be compiled, the interpretation of textual and visual material delivers objects of intervention that provide an opportunity to re-formulate our attitudinal milieu immediately – and in the most pragmatic and visceral manner.