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Article Excerpt
GILLES DELEUZE PREFERRED THAT HIS WORK BE USED, not analyzed. From a sociological perspective, this paper traverses and uses various paths to argue that "genetic fundamentalism" negates "expressions of life" deemed disabled. (1) Moreover, this essay argues for the affirmation of "expressions of life" that have been negated as "states of exception." Applying Giorgio Agamben's theoretical views on life to the concept of disability, I argue that disabled lives exemplify what is meant by the "bare life" (associated with the state of exception) as opposed to the "political life" linked primarily with being able-bodied. This distinction will attempt to explain a public discourse that favours a non-disabled orientation towards the social world and questions the authenticity of the experience of cerebral palsy. Next, the conflation of liberal individualism and nostalgic populism is critiqued for justifying the negation of (possible) "expressions of life" through "genetic fundamentalism." The following section addresses the dominance of the discourse of genetics in any discussion concerning life. Drawing on the work of Judith Butler, the next segment argues that there is an ableist matrix that constitutes the disabled "expression of life" as negative. The paper concludes by offering an alternative view that affirms "disabled.... expressions of life" through the Deleuzian concept of "Pure Immanence."
Disability as a "Bare Life," Which Is a "State of Exception"
The title of this special issue, Genes and Society: Looking Back on the Future, resonates with me. On September 28, 1997 I was forced to look back on my own genetic make-up (as some other people perceive it) to critique the future. Listening to the Canadian Broadcasting Corporation radio program Cross Country Check Up (Murphy, 1997), I heard a geneticist claim that he had "discovered" the genetic cause for cerebral palsy. Over the years, my physicians have concluded that my cerebral palsy was caused by a lack of oxygen to the brain. This new genetic explanation is a pre-cursor, and reduces the "lack of oxygen to the brain" to a complication resulting from genetic mutations. Consequently, my body and my life are now being read through the lens of genetic fundamentalism.
Provoked, I felt compelled to respond and called the program. In my interview, I explained that the question "When should we screen for genetic defects?" devalues the experience of disability by presuming that genetic intervention is not only permissible but preferable in certain cases. In terms of so-called genetic abnormalities that may cause illness and disability, "common sense" would suggest that some intervention is not only desirable but is a societal goal. I spoke about the positive aspects of my cerebral palsy, stating, "not in the sense of a 'gift' from which other people learn, or as God's chosen 'crippled angels,' but rather how my spasms give me great joy and how they inform my life. Any success I have is not despite my cerebral palsy but because of it!"
I also argued that these positive aspects of cerebral palsy cannot be "measured," because the ways and means of measurement are developed from the perspective that devalues cerebral palsy as an "expression of life." I spoke about the similarities between myself and Tracy Latimer, who was murdered, to forestall the invocation of a continuum of cerebral palsy with myself at the pinnacle (the poster-child for overcoming) and Tracy Latimer (symbolizing victims) shackled to the lowest rung in life and memory.
As my segment concluded, the host, Rex Murphy, thanked me for educating him as well as others. I corrected him, stating, "My intention is not to educate others but to give cerebral palsy a life-affirming presence. I explained that my life is not, and should not be, dependent upon able-bodied people understanding me or giving me their blessing." Often people who privilege an able-bodied life have demanded an explanation for my being alive. Today, by having a presence, I conveyed to the audience that no longer did I have to explain, justify, apologize for, or educate others about my cerebral palsy. The radio segment offered me another opportunity to expose the vivaciousness of cerebral palsy as a life affirming force. Consequently, I am moving beyond the dichotomous pairing of disability and ability which restricts my vivacity.
Since I was a disembodied voice over the radio, ableist rhetoric and anger could be vented. One caller screamed, "How dare you question normality!" Others said that I should be thankful they allowed me into a regular school and I repay their generosity by making such outlandish statements. No matter what I said, the ableism was pervasive. Believing that I was too intelligent, some callers questioned my ability to comment on the lives of severely disabled people. Others maligned me for being outrageous and lacking rational thought. Paradoxically, I was either too intelligent or too stupid. Either way, the status quo which favours the body and lives of non-disabled people remains intact.
The theories of Giorgio Agamben allow me to explore the underlying principles that inform this discussion on genetics and disability. Giorgio Agamben (1996: 30) argues that "the concept of people does not refer to a unitary subject. It is an oscillation between two opposite poles: People as a whole refers to an integral body politic whereby life becomes politicized. And people as a subset a fragmentary multiplicity of needy and excluded bodies." Agamben (1996: 30) adds, "The concept of people pretends to be inclusive with no remainder. While simultaneously an exclusive concept known to afford no hope." At one extreme, people were anointed to the total state of sovereignty, at the other end, total banishment. These banished people are considered to be under the "state of exception" (Agamben, 1998: 26-27).
For the majority of the radio audience, I personified the extreme binaries of the concept of people by being anointed to the total state of sovereignty while clinging to aspects of my life that should be banished as the "state of exception." More disturbing for the audience was my privileging of "my expression of life," which flowed from my spasms over other expressions associated with able-bodiedness. My point in affirming a disabled expression of life is to give it a presence. Ironically, by giving voice to a "disabled expression of life" and noting its significance within the polis, I unwittingly reinforced my stature as a "bare life" by speaking "madness" worthy of my being banished to the "state of exception" by the majority of the listening audience.
Tracing within modern society, where sovereign decisions give life and pronounce others "not worth of living" coincide. Within modernity, the line between biopolitics and thanatopolitics has been blurred, and there is a movement towards an "ever more intimate symbiosis not only with the jurist but also with the doctor, the scientist, the expert, and the priest" (Agamben, 1998: 122). The symbiosis between the sovereignty and physicians in the decision-making of what constitutes "a life not worth...
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