"Rewriting the Myths, Redefining the Realities"
It seems to be an eternal dilemma for those of us who are
disabled. Are we “just like everybody else”? Or are we “different”? Many of us
choose to promote the first view, emphasizing our common human characteristics
and minimizing our disabilities’ impact on our lives. This approach offers some
alluring yet elusive benefits: It purports to make nondisabled people more
comfortable with us, and it argues for our
inclusion in a society constructed by and for nondisabled people.
On the other hand, denying the differences that disability makes requires denying a part of ourselves. A commitment to true social and political change may demand that we highlight our differences as disabled people, rather than playing down those differences.
In his book, The Difference That Disability Makes, Rod Michalko makes a convincing case in favor of “choosing disability.” To do so means to reject the notion that disability is somehow “unnatural,” a negative condition imposed from the outside on an otherwise “natural body.” In fact, Michalko disputes the very concept of a “natural body,” distinct from and unaffected by social practices. Instead, he argues that our bodies are, themselves, socially constructed — as are abilities and disabilities. He demonstrates this process of social construction powerfully and dramatically, by recalling his own transition from sight to blindness, and his own and others’ responses to his blindness.
As a young teenager, Michalko began experiencing a gradual loss of vision. For the first several years, he clung tenaciously to an idea of himself as a sighted person. In order to do this he closely studied the ways in which people established and conveyed themselves as sighted, and he mimicked their actions. For example, he learned acceptable body language, such as looking in the direction of the person to whom he was speaking. He learned to use sight-centered figures of speech, such as “I see what you mean.” In these and other ways Michalko constructed sightedness. Later, he realized that everyone — not just blind people— engages in this somewhat artificial construction of sightedness. This revelation would eventually lead him to develop this book’s nuanced analysis of disability in a social context.
Michalko is a sociology professor and researcher at St. Francis Xavier University in Canada. His prose is steeped in postmodern theory, which can at times make for difficult reading. However, he grounds his analysis in his own real-life experiences, which makes the book more accessible than it would be otherwise. His conclusions are not esoteric speculations; rather, they carry implications for practical/political strategizing.
For example, Michalko is critical of the trend toward “people first” language — i.e. preferring “people with disabilities” over “disabled people.” In his view, this represents an attempt to separate the disability from the disabled person’s personhood, and from the fictitious “natural body.”
Michalko critiques the prevalent, almost unquestioned belief that disability is an undesirable condition imposed on a person. Michalko recalls his first direct encounter with this belief. An ophthalmologist, having just completed a thorough examination of Michalko’s eyes, offered a clinical diagnosis followed by a comment about a possible hereditary component of this condition. The doctor
advised Michalko to seek genetic counseling, in order to avoid the possibility of having children who might inherit his impairment. The author points out the certainty with which this doctor presumed that Michalko — indeed, everyone – shared his negative view of disability. Collectively, citizens maintain a virtual, unspoken consensus viewing disability as an alien state, hateful to the disabled person and to society.
Disability studies researchers and disability rights advocates are beginning to challenge that consensus. Michalko points out that when we embrace our identities as disabled people, when we embrace the differences created by our disabilities, then we can demand a place for ourselves. Rather than mimicking nondisability, and adapting ourselves to fit into an inaccessible society, we can insist that society adapt to us.
The Difference That Disability Makes provides a powerful analysis of the presumptions underlying disabled people’s second-class status. It also argues persuasively for a more explicit acceptance of disability which is, after all, just as natural as its opposite. Michalko urges disabled people to come out, to refuse to continue passing as“normal” by prevailing social standards. He talks about how he eventually stopped trying to remake himself in the image of sighted society, and found ways to be *both* an active, competent professional *and* his own true disabled self. “I do things,” he says, “but no longer to prove that I can and no longer to pass as sighted.” (p. 173)
The only real weakness in Michalko’s book is his failure to develop the full implications of his argument. The Difference That Disability Makes merely suggests a vision of self-acceptance leading to revolutionary action. Yet Michalko does not fully articulate just how disabled people’s coming out will ultimately undermine assumptions about normalcy and naturalness, and change society.
Clearly, when visibly disabled people are seen in previously restricted spaces, engaging in a wide range of activities, public attitudes will begin to change. But beyond that, what fundamental social values might be challenged by coming to terms with the existence and the requirements of disabled people? Michalko’s book offered numerous provocative insights, but ultimately left me wondering: What is THE difference that disability makes?
Once again Autism is in the news.
It appears that the frequency with which Autism is occurring is increasing. Two possible causes are under discussion to explain this phenomenon. The first relates to more and better diagnostic procedures and the second to environmental factors. The chief environmental factor currently under suspicion is Thimerosal, a mercury based preservative in childhood vaccines.
The Eli Lilly Company, maker of Thimerosal, is worried enough about its potential liability to have its allies in Congress include a provision in the Homeland Security Act that exempts vaccines from product liability. Parents of children with Autism have made such an issue of the favoritism shown in this provision that members of Congress have pledged to remove it during the current session of Congress. It is well established that mercury can cause damage to the brain, but research has yet to link mercury poisoning to Autism. Studies underway are investigating the linkage, if any.
When the current research is complete, we will have a better idea about Thimerosal’s role in the increased frequency of Autism. In the mean time we can take the opportunity to become better educated about the condition. We need to understand Autism so that we can evaluate the political flap over Thimerosal, and so we can be more effective advocates.
For those who want to learn more about Autism, I recommend a book entitled, “Autism, Understanding the Condition”, by Mesibo, Adams, and Klinger. The authors provide a brief but comprehensive history of the condition. They review the development of the definition of Autism. The reader will find a careful discussion of diagnostic procedures, treatment strategies, and one can get a well-reasoned overview of the knowledge that currently exists in the field of Autism. Controversial issues associated with Autism are objectively discussed.
Leo Canter first described autism in a paper in 1944. During the first 30 years of the study of the disorder, it was treated as a psychodynamic condition. It was hypothesized that mothers who were cold and distant caused Autism in their children. Needless to say this view caused a great deal of pain among the parents of Autistic children. Fortunately we now believe that Autism results as the cause of complex genetic and congenital factors. However, the exact causes are still poorly understood.
There are three generally agreed upon elements that define Autism. They are self insulation, language abnormalities, and dysfunctional social relations. The authors explore these areas and then compare Autism with a variety of developmental, learning, and psychiatric disabilities. They argue that Autism is a unique disorder that can only be understood in the light of its own characteristics.
The authors offer a good overview of treatment modalities in use, including a discussion of the medications that are commonly administered. They favor behavioral strategies, early intervention, and highly structured school curriculums. They believe that a full continuum of services must be available to meet the diverse needs of persons with Autism.
Perhaps nothing is more characteristic of human experience than entering into the world of shared meanings. It is precisely this shared world that the person with Autism has such difficulty engaging. During the first year of life the Autistic child doesn’t make eye contact, point out a specific object, or gaze at an object with another. Later the child doesn’t join in age appropriate play with other children or grasp the subjectivity of others. The child with Autism also has difficulty learning symbolic language and abstract concepts. For better or worse we are social beings, and it is that very sociality that is so problematic for the person with Autism.
The authors believe that the best strategy for working with persons with Autism in the end is to let them be themselves. One should not try to make them normal. They should be allowed to engage in activities with others that they find intrinsically meaningful. A person should be allowed to find his or her own humanity in his or her own way. It is this insight that makes this book more than just a competent review of the literature. It is a book of value to anyone who wants to better understand the human condition.
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Copyright 2002 A&H Publishing Corporation