Reviewed by Geoffrey F. Reaume (Critical Disability Studies, York University)
Published on H-Canada (May, 2005)
One day, while walking on a main street in a university town, Tanya Titchkosky and her partner, Rod Michalko, had a chance encounter with a senior professor from the nearby university. Both had guide dogs with them: Michalko is blind and Titchkosky had a guide-dog-in-training with her. In the course of their conversation, the senior professor, who mentioned he had a "special interest in the handicapped" (p. 101) said that he discouraged students from attending the university where he worked because, in his opinion, it was not worth the money to make this same place of learning accessible for students with disabilities. Instead, disabled people (a term Titchkosky prefers to "people with disabilities") should go to another university which "is all set up for them" (p. 102). Even though disabled students did attend that same university, they were hardly made to feel welcome in such an inhospitable environment. As the author notes, this discriminatory attitude is shocking, in and of itself, but even more so when it is expressed so cavalierly in the presence of a disabled person--Michalko--who, the senior professor knew, was about to teach a course there. Titchkosky, who has dyslexia, analyzes this incident, along with a number of other personal encounters with people and places, in the context of identity formation as a disabled person. Her approach to this topic, interweaving personal references with theoretical analysis, makes for a rich tapestry of ideas about how disability is situated in society as well as how it can teach people to think about ability and disability in North America today.
Titchkosky and her partner, Michalko, teach sociology at St. Francis Xavier University in Nova Scotia. Their experiences, together and individually, serve as the experiential underpinning of this study. The book sets out to understand the social context of disability in a world for people who are not yet disabled (but many of whom will be one day). The author analyzes the "mapping" of disability and normalcy, and how some disabled people "pass" as people without disabilities. There is a very evocative chapter about how unexpected encounters with disability can leave people both challenged and perplexed about what to do with "unintended" people whose very diversity upsets many preconceived notions about what "disabled" means. The second half of this book includes a discussion of how disability studies is making inroads into the academic study of this topic, as well as a chapter about what it means to be situated "betwixt and between" experiences of marginality and the mainstream.
Like most scholars in the field of disability studies, Titchkosky analyzes disability as a social construction. Early in her analysis, Titchkosky makes this point clear when differentiating between how able-bodied people perceive visible and invisible disabilities. If a person with dyslexia drives on the wrong side of the road, as Titchkosky has done, this is usually blamed upon error rather than disability on her part. However, if her partner Rod makes a mistake in grasping a handle on the door of a taxi cab, this is attributed to his being blind rather than to a mistake in how to open the door. This attitude can lead to the idea that "disability is simply and obviously a bodily phenomenon" (p. 16). The author argues that disability is shaped by social experience and cultural conceptions or, more often, misconceptions about disability. Societal barriers and efforts to ameliorate these barriers, both physical and attitudinal, are among the most important determinants of how people like Titchkosky and Michalko experience disability. For example, a trip to Hart House at the University of Toronto quickly proved impossible for them: there were no elevators; stairs were too dangerously steep and narrow; and the ornamental handrails, not being continuous, were no help if you were blind. Though the Hart House staff said accommodating a person with a guide dog was "not a problem," it was clearly a problem. The staff at Hart House simply failed to recognize how difficult their building was for someone visually impaired to access. Barriers exist where people do not bother to think carefully about disabled people as part of the community, whether as visiting guests, or in any other capacity. Disability is therefore a "problem" insofar as able-bodied people do not make "room" for them, both literally and figuratively.
Central to the author's argument is the need to understand disability, such as blindness, as a teacher or educator. In this way, disability can aid in understanding "our culture and the social meaning of selfhood" (p. 39). Recording, uncovering and interpreting the expression of the authentic voice of people with disabilities is at the heart of this book and Titchkosky does these things very effectively in relating her personal experiences with Rod Michalko. For example, she writes that when she first met her future partner, she was confused as she had thought of blindness as being the total opposite of having clear vision--there was no in between. But, for a time, Michalko was in-between, before he became completely blind. This ambiguity as well as diversity of disability is part of what is so little understood by most people who have not lived it, or who have not lived with someone who has been or is disabled. Too many people see disability as a fixed and clearly defined lack. Yet, disability is not fixed and people who are disabled have varied definitions of their own lives, far beyond the medical and legal categories which are too often seen as the ultimate word on what disability means. Titchkosky notes how important it is to examine the ways people "map" or conceptualize disability in order to understand the social situation of disabled people.
Constructing disability as belonging to the "other" is perhaps most strikingly shown where the author discusses "passing" both as able-bodied and then as visibly disabled. Prior to becoming completely blind, even though he was partially blind, Michalko was able to "pass" as sighted, but as soon as he had a guide dog, he became publicly identified as blind. Similarly, when Titchkosky and Michalko travel with their guide dogs, she "passes" as blind, though she is not. In her discussion of these experiences, and her adult life as a dyslexic, Titchkosky writes that it is often only blindness which is conceptualized as a disability: "Even though most people know that I am dyslexic, I am spoken to as if disability can only be located in Rod or in some distant 'they,' as in 'How do they teach?'" (p. 87). So long as someone "appears" to be able-bodied, they are not considered disabled.
Countless disabled people feel social pressure to pass as "normal," with concomitant influence on self-worth, access and accommodation. To take but one example, students with a psychiatric history or a learning disability are frequently very reluctant to disclose this information, largely due to societal prejudices towards people with what are viewed as "invisible" disabilities. Such students are under societal pressure to pass as "normal," even though they deserve to be accommodated as much as any one else with a disability. The impact of these pressures are felt in a myriad ways, including increased social isolation, depression and suicide. Titchkosky discusses the problem in terms of "unintended" people: people not expected to be a part of the discussion or environment in which they live. Why bother to accommodate them? This would be too expensive after all. Of course, the point being made here is that the societal expectation of appearing "normal," whether in relation to physical, mental or sensory abilities, denies the diversity of what disability means and creates huge impediments for those people who are pressured to "pass." It most obviously and visibly creates problems for those individuals who can not pass--they are marginal in the world of the able-bodied, whether it be in regard to access to buildings, jobs, education or activities that most able-bodied people take for granted.
In an effort to challenge these prejudices and offer new interpretations on this topic, disability studies has been flourishing over the last two decades, particularly since the 1990s. Titchkosky divides the field into "old" and "new" disability studies. The old disability studies takes the perspectives of so-called "normals." Disability exists as a "problem" in standard sociology texts which Titchkosky critiques; it is equated with "deviance." In this old school, people with disabilities are portrayed, above all, as passive recipients of various kinds of "treatment"--whether by medical officials or as stigmatized individuals exiled from the community. Disabled people as agents in their own right, advocating and organizing, scarcely figure in this traditional approach.
In contrast, the "new" disability studies takes disabled people as very active participants in their own lives, as people who are not passive objects to be studied, but as engaged participants who are producing the knowledge which forms the basis of this work. This new field is particularly critical of the medical model and it accommodates different intepretations about what disability means and how it is experienced. Crucial to this understanding is the need to get away from the notion that much of what disabled people do should be interpreted as a "symptom" (p. 162-163). Instead, disability studies seeks to challenge the ideas of what "normal" means. Being disabled is a "normal" experience for many people from birth and it will be a "normal" experience for many people as they live out their lives. As Titchkosky writes, "disabled people are 'normal' people who just happen to be troubled by an inessential add-on condition" (p. 167). The dissemination of knowledge through the new field of disability studies therefore challenges many of the preconceived notions around disability that exists to this day.
Titchkosky points out that, in the wider scheme of things, disability is neither "normal" nor "abnormal"--people can find themselves living a normal experience in an able-bodied world, while also "being struck by the touch of abnormality" as a disabled person (p. 223). In this sense, disability is about being between different levels of experiences and values--"betwixt and between"--neither being part of mainstream society nor entirely outside of it either. (Of course this depends on one's social situation, since historically, disabled people were confined in institutions outside of mainstream society.) She also makes this point by noting that she wrote the book as a dyslexic writer who put "my unique word order into 'normal' grammar" and who read every word of it "to Rod, in his blindness" (p. 231). Different lives, different experiences of disability, of being between what is normal and abnormal. The marginal existence of most disabled people, Titchkosky argues, can serve as a valuable guide, a point she proves quite eloquently in this thoughtful and thought-provoking study.
. See, for example, Marcia H. Rioux and Michael Bach, eds., Disability Is Not Measles: New Research Paradigms in Disability (North York: Roeher Institute, 1994); Lennard J. Davis, Enforcing Normalcy: Disability, Deafness and the Body (London: Verso Press, 1995); Len Barton, ed., Disability and Society: Emerging Issues and Insights (Harlow, England: Addison Wesley, Longman, 1996); Michael Oliver, Understanding Disability: From Theory to Practice (New York: St. Martin's Press, 1996); Simi Linton, Claiming Disability: Knowledge and Identity (New York: New York University Press, 1998); Marta Russell, Beyond Ramps: Disability at the End of the Social Contract (Monroe: Common Courage Press, 1998); Mairian Corker and Sally French, eds., Disability Discourse (Buckingham: Open University Press, 1999); Mairian Corker and Tom Shakespeare, eds., Disability/Postmodernity: Embodying Disability Theory (London: Continuum Press, 2002); Rod Michalko, The Difference That Disability Makes (Philadelphia: Temple University Press, 2002); and Sharon Snyder, Brenda Jo Brueggemann and Rosemarie Garland-Thomson, eds., Disability Studies: Enabling the Humanities (New York: The Modern Language Association of America, 2002).
. In addition to the above listed sources, the journal Disability and Society, published in Britain since 1986, is the most well-known academic periodical of its kind in the English-speaking world. When it began, this journal first started to publish three times a year but interest has grown so much that it now publishes seven times a year.
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Geoffrey F. Reaume. Review of Titchkosky, Tanya, Disability, Self, and Society.
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