re-imagining the (dis)abled body

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Journal of Medical Humanities [jmh] PH042-302468 April 26, 2001 13:56 Style file version Nov. 19th, 1999

Journal of Medical Humanities, Vol. 22, No. 3, 2001

Re-imagining the (Dis)Abled Body

Cassandra Phillips1

Disability imagery, whether photographs, posters, or verbal or written discourse,comprises multiple viewpoints or gazes, ranging from the impaired physical bodyto the disabling social environment. In some instances, photographic image andaccompanying text combine to reinforce the notion of persons with disabilities ashelpless and needy people. These conceptualizations not only emphasize obviousprejudices and limited thinking about persons with disabilities, but also illustratethe consequences: persons with disabilities tend to assimilate the oppressive im-ages constructed by society. In order to create positive images of, for example,persons with brain injury, epilepsy or hemiplegia, we need to develop a disabilityconsciousness that allows us to re-imagine (dis)ability in ways that value individ-ual identity. In so doing, we raise critical questions about self and other.

KEY WORDS: disability; images; advertising.

Although much recent scholarship explores how difference and identity op-erate in such politicized constructions as gender, race, and sexuality, criticism hasgenerally overlooked the related perceptions of corporeal otherness we think of asdisability. Disability is centrally viewed as personal tragedy and loss within thebody. Historically, persons with disabilities have been described as freaks of nature,objects of pity, and burdens to society.2 When we hear about actors like Michael J.Fox having Parkinson’s disease or Christopher Reeve having spinal cord injury,we think about what a great loss this is to the individuals concerned, the families,and the entertainment industry. Tragically “struck down in their prime” these tal-ented individuals are viewed as incapable of leading a normal life. Of course, a

1Address correspondence to Cassandra Phillips, Department of English, University of Saskatchewan,9 Campus Drive, Saskatoon, SK S7N 5A5 Canada.

2See Thompson’s (1997) account of persons with disabilities in freak show exhibits in London duringthe early nineteenth century. One example, Tono Maria, originally from Brazil, was stripped of hercultural identity and framed by the lurid interpretation of early nineteenth-century English society; herbody bore nearly one hundred scars, each ostensibly representing an act of adultery. She became theembodiment of sexual deviance: the cautionary tale of natural female appetite let loose (pp. 55–56).

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common assumption is that we are all aware of what a normal life is. People tendto compare themselves to a standard or norm; from the day we are born, we areweighed and measured according to the norm. Today, people continue to debatethe norm surrounding body weight, intelligence, sexual orientation, even breastsize. The disability community is generally perceived as outside of the norm.

In this paper, my intention is to re-imagine how we (re)present persons withdisabilities. Disability imagery, whether photographs, television advertisements,pamphlets or posters, along with related text, are generally associated with charityor medical advertising. We never see a woman with a visual disability holdingup a bottle of Chanel perfume or a can of Pantene hair spray.3 Rather, the personwith a disability is the one in a wheelchair or invalid scooter while the speaker (orrelated text) extols either the apparatus or the audience as benevolent purchaser.Text and photograph usually combine to reinforce the notion of persons withdisabilities as helpless, needy people. In this paper, using both visual image andtext, I will demonstrate how such conceptualizations not only emphasize obviousprejudices and limited thinking about persons with disabilities, but also illustratethe consequences. Persons with disabilities have largely assimilated the oppressiveimages constructed by society, and, in so doing, deny their personal and multipleidentities (Peters, 1996). When persons with disabilities are told repeatedly howuseless they are, they soon begin to believe it and they no longer feel they cancontribute to society as employees, spouses, partners, or parents. In order to createacceptable images of persons with disabilities, we need to move away from thedisabled body as the site of impairment, because the victim position this affordsundermines the development of a positive subject position necessary to overcomethe otherness that persons with disabilities struggle against. More than anythingelse, we need to consider the unique and valuable perspective that persons withdisabilities bring to their own representation.

Disability comprises multiple viewpoints or gazes, ranging from the impair-ment of the body to the disabling social environment. Three models have emergedfrom the field of disability studies that serve as core organizational principles. Thefirst model, the medical model, assumes that disability is a physical condition inneed of medical intervention: the goal is to help the patient resume as normal a lifeas possible. Thompson (1994) states that, although “medicalization in certain con-texts has a role in managing some disabilities, it easily slips into paternalism, echoesstereotypes of dependence, and/or reinforces the sick role for disabled people”(p. 584). Utilizing a medical model approach, professionals chart and control theoutcome for persons with disabilities, and the disability becomes both the focusand the “problem.” As such, solutions incorporate medical interventions such ascounselors, doctors, rehabilitation workers, special care facilities, and so forth, allof which involve the person with a disability as the passive recipient of the service.

3A disability can be visual or nonvisual. When a person who is paraplegic uses a wheelchair, his or herdisability is termed visual. On the other hand, a person with cognitive impairment following a braininjury has a nonvisual disability.

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The second model, the social model, presents disability as a cultural constructin which disability has no inherent meaning but is defined by any given commu-nity’s understanding of a person’s role within that community. A few weeks ago, afriend of mine who has cerebral palsy and uses elbow crutches was walking alongThird Avenue in Saskatoon when she was stopped by a stranger who commentedon how wonderful it was to see someone so “brave” smiling and attempting tolead as “normal” a life as possible. My friend simply nodded, and the strangershouted “I just love you folks” as she walked away. While I do not doubt that thewoman meant well, her words presume that my friend is overcoming an affliction,certainly struggling to be “normal.” Her comments are patronizing and reflect theheroic status granted persons with disabilities who rise above the position affordedthem by mainstream society.

Finally, the third model, the Independent Living model, challenges both themedical and social models of disability. In the Independent Living model the socialconstruct of persons with disabilities, including physical and attitudinal barriers,become the problem because they reinforce the negative stereotypes of personswith disabilities. A physical barrier means that persons who use wheelchairs cannotaccess a building in the same way as those who are able-bodied; it is demoralizing(and dehumanizing) to have to take kitchen entrances or service elevators to im-portant events. Similarly, if an employer’s attitude is that persons with disabilitiesslow down a workplace, his staff will begin to think the same way. The Indepen-dent Living model offers solutions, skills development, peer support and self helpto remove barriers and empower rather than disempower persons with disabili-ties. Independent Living includes control, flexibility and choice in all aspects ofthe lives of persons with disabilities.4 For example, persons with disabilities maychoose to live outside of institutions, in the community. They may opt to controlavailable resources, including homecare workers and personal care attendants, tobest suit their needs. More relevant to this paper, when the Independent Livingparadigm is applied to advertising, it not only empowers persons with disabilities,but also affords persons with disabilities the subject position they deserve.

In telethons and charity campaigns, the goal is to raise money for the orga-nization that serves the consumer, or the person with a disability.5 Rarely, if ever,

4The Independent Living (IL) Movement was launched in the United States in the early 1970s. Thefirst Independent Living Centre was founded in Berkeley, California following an attempt to integratestudents with disabilities into the community; it was managed mainly by persons with disabilities.Today, there are more than two hundred centres across the United States and more than twenty-threecentres across Canada. In Canada, the IL centres are consumer run and driven in that they supportservices requested by persons with disabilities in that particular community. As a result, each centreoffers different or varying supports from one another. In Canada, the first centre opened its doors inKitchener, Waterloo, Ontario in 1992. The Canadian IL Movement differs from the US Movementin that it was shaped by the consumers’ advocacy movement, particularly its emphasis on personalempowerment.

5See Lonsdale’s (1990) account of the origins of charity-giving to the disabled poor. During theIndustrial Age, England’s workhouses were dumping grounds for the mentally insane and physicallydisabled who were deemed ineligible for handouts from Charity houses (p. 28–41).

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does the person with a disability play an active role in the design of the campaign orthe management of funds received. There are, of course, scores of youngsters whoserve as poster children for the charity in question. These poster children generallyfit two criteria: they must be attractive and have a visual impairment that generallyrequires the use of a wheelchair or crutches. While the annual Jerry Lewis Telethonraises millions of dollars for muscular dystrophy, the children in attendance serveas nothing more than cute mascots or lures. Furthermore, by labeling the childrenas “Jerry’s Kids,” the organizers reinforce the dependency of persons with disabil-ities. Viewed as victims of a disease, persons with muscular dystrophy becomecharity cases because they need special care, where, I would emphasize, specialbecomes synonymous with separate. Many charitable organizations would be thefirst to defend the fact that such displays are necessary to increase public and cor-porate donations. Longmore (1997) suggests that, in telethons, the differentiationbetween the “givers and the takers of this world” made implicit in the appeal fordonations also draws on moral boundaries, because the appeal “contrasts humaneconcern for one’s neighbor with selfish preoccupation with one’s private interests”(p. 134). It distinguishes between those who personally shoulder responsibilityfor civic welfare from those who indulge in self-centred responsibility. Longmore(1997) goes on to point out that, as recipients, persons with disabilities form a thirdcategory, a category that is intextricably entwined with social stigma (p. 136). Thegivers reassure themselves of their individual and collective moral health whilethe recipients are socially invalidated. Persons with disabilities are ritually definedas dependent on the moral fitness of nondisabled people.

Like telethons, charity advertising focuses on the deserving few who aredependent on others to liberate them from the negative embodiment of theirpersonhood. The Saskatchewan Cerebral Palsy Association’s black and whiteposter (Plate 1) illustrates the point in question. Central to the poster is a pho-tograph of an attractive Caucasian middle class child who uses a wheelchair. Thechild is immobilized, with body and feet firmly strapped in place. The child’s armsare extended in a way that not only invites observer response, but also exposesthe child’s vulnerability. He smiles directly into the camera hoping that, as thetext implies, the observer will “take time to understand” his condition. Finally, thesmall bouquet graphic between the image and the text symbolizes the joy of bothgiving and receiving. The poster reinforces the medical model of disability.

On the other hand, the poster for the Association for Community Living(Plate 2) supports the social model of disability. Again, central to the poster isan image of an attractive Caucasian middle class child: a little girl with Down’ssyndrome. Just like any “normal” child, she is dressed for school, with knapsackand animal print jacket; but, unlike other children, as the text indicates, she isdifferent by means of association. The girl stands alone and bewildered; she gazesdirectly into the camera, grasping the wire fence which separates her from theschool playground and her peers. The height of the fence and the size of the bicycle

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serve to increase her vulnerability, isolation and otherness. The Association forCommunity Living speaks for the child, demanding, in exclamatory fashion, thatthe child should not be excluded on the basis of her disability. The framing of thetext points down toward the solution: the Association for Community Living andpublic donation.

Another example, a pamphlet distributed by the Spina Bifida andHydrocephalus Association of Canada, plays on the social and medical modelof disability. The text on the inside of the pamphlet outlines the likelihood of oc-currence of the disease in Canada, along with definitions and graphics of the threevarious types of Spina Bifida, a condition that demands public response becauseit is irreversible. Turning to the cover of the pamphlet (Plate 3), again a childtakes centre stage. The child stands in the shadows, with his back to the camera.Supporting himself on elbow crutches, his small frame faces an open doorway; hisexit is barred by a gate, which serves to protect the child from injury. The imageintroduces the observer to the physical limitations of a disease that prevents thischild from going outside to play. In isolation, he can only stand and wait. The textis minimalistic and impairment specific. It reaches out to the observer, indicatingthat the odds are in favor of someone coming to the child’s aid. The careful framingof the logo and identification of the Spina Bifida and Hydrocephalus Associationindicates to the observer that the Spina Bifida and Hydrocephalus Association isthe rightful custodian, the solution to this brand of impairment. The trapping ofthe passive image and its reflection between the active text and the organizationimplies that the solution is outside of the child’s control. At the same time, the childis nameless and has no voice. In many ways, he is dependent on the roll of the dice;according to the Law of Probability, if he waits long enough, someone will cometo his aid. This advertisement unites the charity and the giver’s gaze; the consumerof the service is not only silenced, but also dependent on others for assistance.

The problem with charity advertising and the samples above is that theyconstruct meaning within the disabled body. Theorists like Sontag (1982, 1991),Burgin (1982, 1986), and Spence (1988, 1995), who have written on photographytheory and practice, have developed a postmodernist approach to photographicimage and representation.6 Burgin (1982) locates meaning not within the surface ofthe image, but within the context and the discourse in which the image is positioned.Just as an advertising image is anchored by a caption, the meaning of that imageexists by way of the reading of other meanings by the observer of the image. Thetext acts as policer of the image, because the number of readings of that imageavailable to the observer is closed off by the text. The observer/reader projectshis or her own meaning onto the image, which joins with its representational

6Peters (1996) points to the value of postmodernism in disability studies because it challenges thecultural borders that have been constructed through the process of cultural politics in institutions suchas education. Cultural borders are seen as historically constructed, and socially organized maps of rulesand regulations limit and enable particular identities. Postmodernism also encourages self-learningand telling of personal experiences (p. 222).

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discourse. As such, the space surrounding the image, between the observer andthe text, becomes the entry point into the image.

The basis of any “mood” or “feeling”. . .pictures might produce, as much as any overt“message” they might be thought to transmit, depends not so much on something individ-ual or mysterious but rather as our common knowledge of the typical representations ofprevailing social facts and values: that is to say on our own knowledge of the ways objectstransmit and transform ideology, and the ways in which photographs in their turn transformthese. (Burgin, 1982, p. 41)

The context influences the process by which the image is both constructed andinterpreted. Bearing this in mind, if we move away from the medical modelapproach prevalent in disability advertising, we can effect change in the waythat persons with disabilities are constructed in advertising by challenging thesocial, political, ideological, and psychological ramifications of the discursiveenvironment.

In contrast to the images shown earlier, I want to turn to a photograph bySpence (1986), who intertwines photographic theory and practice by fusing thepersonal and the political within the optics of production (Plate 4). Spence’s workdeals with a visual/textual dialogue with the self, whose audience internalizes themeaning through their own survivorship (or imagined survivorship) of the samecrisis. Spence is the photographer, the observer of the image in the mirror, theauthor of the text, and the survivor of breast cancer in this photograph. As such,she opens up a realm of possibilities for interpreting the image/text. While Burgin’snotion of meaning is the end point within the discourse, for Spence it is the pointof departure. Observing this photograph, we shift back and forth from the center tothe margin, combining image and text into a multitude of possible interpretationsof the image/text. The medical condition becomes secondary to the action. Indeed,by articulating the condition, Spence removes herself from the role of victim tosurvivor:

By creating a wide range of images I have been able to examine many different aspectsof myself and past history, and to integrate these into a whole. By acknowledging aspectsof myself and my past, which I might otherwise hide, or see as my “shadow” side, I havefreed myself from internalized restrictions and oppressions, and have come to accept myselfas I am, complete with all the contradictions that have formed me. (Spence, 1986, p. 174)

Spence’s work is termed photo therapy because it is about personal transformationand change. While the image displays the female body as fragmented, it alsoprovides the impetus for self-exploration and reconstruction (other than at thehand of the surgeon). It offers a starting point from within photography to movebeyond the external analysis to ask questions about what is not being shown orsaid—what cannot be said—and what is rendered absent. The image and the text,when combined, produce a personal and a political statement. When persons withdisabilities create, circulate and own the image production processes, they defineand control their meaning.

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FromPutting Myself in the Picturec©1986 Jo Spence. U.S. edition, The Real Comet Press,Seattle, WA. Reprinted by permission.

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It follows then, that images produced by persons with disabilities have thepotential to challenge and subvert the ways that persons with disabilities are con-structed and represented. Those of us with disabilities who know what it meansto be disabled in the most basic sense of the word, through our daily struggleswith mobility, physical differences, and intellectual and cognitive challenges, mustput forward a disability consciousness that re-imagines existing paradigms. His-torically, the work of Friere (1983) regarding the liberation of peasant farmersfrom subordination through literacy and self-awareness calls on the notion ofconscientizacaoor “conscientisation.” This concept entails dialogue that existsin a constant dialectic between action and reflection directed at transformingstructures of oppression. The goal of “conscientisation” is to develop a self-consciousness as a prerequisite to liberation from an oppression which deper-sonalizes, and therefore, dehumanizes those who are oppressed (Peters, 1996,p. 225). By opening up a dialogue on the way we feel about disability, we raiseawareness and pose questions concerning issues of individual identity and socialconstruction.

Charity advertising is the problem not the solution to isolation and impairmentof persons with disabilities. Hevey (1992), a British photographer who also has adisability, was approached at an exhibition by a woman who has epilepsy fearinghe would show positive images of people having seizures (p. 17). Her commentsnot only speak to the sparsity of image references available for her and others tocall upon, but also embody her own unresolved dread of her condition. Neither pitynor spectacle is a necessary component to charity advertising. In his photographsof persons with disabilities, Hevey (1992) merges the personal and the politicalin ways that challenge and subvert the manner that persons with disabilities areconstructed by society. Moving away from the use of shadow and grey images,Hevey’s use of color demonstrates the significance of the image, which is reflectedironically in the text. In the photograph (Plate 5), the two women are subjectsof the photograph as well as writers of the text. They look into the lens of thecamera with a combined sense of disgust and celebration. The angle of the camerais such that it looks down on the figures, reinforcing society’s construct of personswith disabilities as subordinate and childlike. Party favors, identity tags, colorfulparty frocks and a cake proudly displaying the message “tragic but brave” recreatedifferent levels of social discrimination. Hevey (1992) asserts that his aim is to“name the pain or the oppression but not construct a victim” (p. 91). The textmoves beyond the surface of the photograph tohow identity is experienced andconstructed; it ironically celebrates inclusion rather than exclusion of personswith disabilities. By inhabiting the negatively constructed images, the womenforce the audience to reconsider their position on and construction of persons withdisabilities. Humor is a vital component, because it displays the point of contactbetween the oppression and the point of resistance. More significantly, impairmentis located outside of the image, within society.

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Reprinted by permission of David Hevey. Original photograph in color.

Acceptable disability imagery derives from lived experience. Persons withdisability need the space to telltheir story, the journey oftheir body. In so doing,they reclaim aspects of themselves and are empowered to take charge of theirown lives. Hevey (1992) states that “radical disability photographic practice will

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portray the process of self love, the process of personal power and the process ofpolitical power” (p. 118). Acceptable disability imagery should contain the signsof the pain, the sign of the reclaimed body, the revisualization of the “flaw” of theimpairment, the marks of the struggle and overcoming, and signs for the future.Both Spence’s (Plate 4) and Hevey’s (Plate 5) photographs incorporate these vitalelements; they draw the observer into the visual dialogue through the process ofmemory and identification. By visualizing the site of impairment in the mirror,Spence is able to reconstruct her fragmented self into a whole that challenges ourway of perceiving and understanding the body dialectic. Similarly, surrounded byparty clutter, the women in Hevey’s photograph permit observers to identify withrather than separate themselves from difference. In other words, the process of selfidentification provides the impetus for change.

If persons with disabilities need to take charge of their bodies and the ways thatthey are represented, we need to reexamine the way we look at charity advertising.In writing this paper, I struggled on the one hand with the images of personswith disabilities portrayed on telethons, and on the other hand with the politicalcontent of images created by photographers like Hevey and Spence. As much asI was drawn to Spence’s photo therapy images, they could not (and were neverintended to) draw in the much needed funding required for services for personswith disabilities. Much to my chagrin, Jerry Lewis will be around for a few moreyears. Having said this, funders are beginning to give persons with disabilitiesa legitimate voice and position in their own image making. This is evident inthe recent television advertisement titledAlex’s Wishproduced for Make a WishFoundation of Michigan.7 The Make a Wish Foundation solicits public donationsto grant wishes to young children who are survivors of cancer or have some formof disability. Alex’s Wishwas borne out of an experience in an amusement parkwhere, rather than be helpful, visitors at the park chose to stare at Alex and the otherchildren in her group who had lost their hair, used crutches or wheelchairs. It wasAlex’s wish that they could all be viewed differently. She died shortly after the tapewas produced. As such, it supports the notion of consumer control characteristicof the Independent Living philosophy. In the advertisement Alex and her friends,dressed in jeans and caps to cover their bald heads (a result of chemotherapy), lookdirectly into the camera and open up a dialogue about their personal experienceswith various forms of discrimination. The setting is minimalistic and the languageis simple but effective; when a child expresses her frustration at the “pokes” ratherthan the repeated intravenous injections related to chemotherapy, the associationis the pain and not the medical treatment. By controlling the text and the image,the children are able to confront social stigma and demand change in attitude.

7Copies of the television advertisement can be obtained from Mr. Gregg Rosenbury, Make a WishFoundation of Michigan, 1669 Hamilton Road, Suite 210, Okemos, Michigan 48864-1809. Phone:517-347-2282. Fax: 517-347-2720.

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The audience can do nothing but empathize. The advertisement satisfies both thefunder and the consumer.

The images, both real and imaginary, that we create about persons with dis-abilities need to move away from the medical model of disability which focuseson the body as the site of impairment. As long as persons with disabilities are con-structed as helpless and excluded from their own image making, they will continueto struggle with issues surrounding individual identity and self worth. An imagecommunicates by means of its association with some hidden or implicit text thatcarries that image into the domain of readability; prevailing ideology, social stigmaand memory contribute to the dialectic between the image and the text. Bearingthis in mind, the next time that the Jerry Lewis Telethon is scheduled viewing or adisability organization’s pamphlet is slipped through our door, we need to examineour own perceptions of the image, the text, and how we are going to respond.

REFERENCES

Burgin, V. (1982). Photographic practice and theory. In V. Burgin (Ed.),Thinking photography(pp. 39–109). London: Macmillan Press.

Burgin, V. (1986).The end of art theory: Criticism and postmodernity.Atlantic Highlands, NJ:Humanities Press.

Friere, P. (1983).Pedagogy of the oppressed.New York: The Continuum Publishing Co.Hevey, D. (1992).Creatures time forgot: Photography and disability imagery.New York: Routledge.Longmore, P. K. (1997). Conspicuous contribution and American cultural dilemmas: Telethon rituals

of cleansing and renewal. In D. T. Mitchell, & S. Snyder (Eds.),The body and physical difference:Discourses of disability(pp. 134–158). Ann Arbor, MI: Michigan Press.

Lonsdale, S. (1990).Women and disability.New York: St. Martin’s Press.Peters, S. (1996). The politics of disability identity. In L. Barton (Ed.),Disability and society: Emerging

issues and insights(pp. 215–234). New York: Longman.Sontag, S. (1982).A Susan Sontag reader.New York: Farrar, Straus, Giroux.Sontag, S. (1991).The way we live now.New York: Noonday Press.Spence, J. (1986).Putting myself in the picture: A political, personal and photographic autobiography.

Seattle, WA: Real Comet Press.Spence, J. (1995).Cultural sniping: The art of transgression.New York: Routledge.Thompson, R. G. (1994). Redrawing the boundaries of feminist disability studies.Feminist Studies,

20,583–595.Thompson, R. G. (1997).Extraordinary bodies: Figuring physical disability in American culture and

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re-imagining the (dis)abled body

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