The Following is a Guest Post from Tom Reynolds, Associate Professor of Theology at Emmanuel College
I am caught up in matters of disability as a parent of a son on the autism spectrum. As an advocate for his “inclusion” on a number of fronts, questions of justice and human rights loom large in my life. Disability interrupts societal mechanisms of exchange based upon ideologies set up to privilege “normal” bodies. A big part of my work, then, is to highlight and even intensify the interruption, not as something troubling but as something potentially transformative. For disability does not simply represent a “body gone wrong,” a problem to be solved physically or remediated by curing. Nor is disability a problem merely to be included, an anomaly that is somehow “other” and outside, which, according to the good graces of a community “needs” to brought “inside” and given access and power to be involved. Both of these become ways temporality non-disabled people claim nobly to give something those others—“they”—don’t have, perpetuating an “us-them” or “inside-outside” dualism that retains a paternalistic ethos of exclusion.
It may be true that without accommodation an impairment (physiological difference, bodily condition) becomes a disability (social and environmental experience of restriction that results from limited access, from being considered to have an impairment). However, outside preconceived programs and expectations fueled by dominant visions of what is “normal”, people with disabilities are persons (equal) with gifts (differences) to offer. Insofar as our communities cultivate relationships of interdependence and respect and friendship between all participants, together we open access in ways far beyond what is often taken for “inclusion”.
In my view, “access” is a continually negotiated process between people with disabilities and non-disabled persons. Accessibility aims to treats all as equal AND different. That is, as equal without therefore being made over and assimilated into the image of what is taken by dominant visions as “normal”—which effectively erases difference—and as different without therefore being marginalized as “deviant” and “abnormal”—effectively denying equality.
In the end, disability is a gift that can teach and empower communities. Disability is about difference, a feature of communities that fosters the diversity, the plurality of life. This is important to stress first of all because such difference is often stigmatized and excluded by ableist ideologies. Second, it is important because disability itself is not singular, but diverse. The lives of people with disabilities are as varied and different as the lives of those without disabilities. And all are in fact part of who "we" are. The upshot is that full participation of people with disabilities is not an option for just communities, but rather a defining feature.
--Tom Reynolds
I like the spiritual exercise involved in glossing the term and reality of difference by the supposition gift. That seems like a valuable linguistic and conceptual tool to help us move beyond inadequate ways of conceiving and speaking about the range of human differences we clump under the term disability. Full participation does seem a norm to guide us in our working for a just society. Of course, full participation is itself subject to difference; it means different things for different persons subject to talent and desire and a host of other qualities. And there are embarrassing admissions that need to be made around the here and now, about our ability to live up to that impelling norm. I know a little about how that works at the athletic centre at the U of T. There has been a conscious effort there over the last couple of decades to acknowledge and live up to something like this norm. But there are only so many places to put locker room spaces to accomodate sexual and religious minorities, so much money in any budget for equipment to help morbidly overweight paralytics access the swimming pool during public hours, and so on and so forth. The norm remains and it goads as it should in the budget and planning counsels of those charged with responsibility for the athletic centre but we have to admit that we live far from the norm despite progress. As long as the goad goads, the norm is doing its work I suppose. But it is a delicate business when one lives far from one's goal. When is the goad working and when do our failures neutralize its work.
ReplyDeleteI think your image of the goad goading is a good place to begin. There is always the norm to live up to (that we fall short of) in terms of services such as you described. And at the same time, there's always changing hearts and minds.
ReplyDeleteWhile reading your comment, I thought of an example. My dad has cerebral palsy, and while I was growing up I never questioned why he limped so badly--I barely even noticed it. It didn't occur to me that his limp was all that unusual until one day in middle school another girl on my basketball team made some biting comment about my "gimpy dad". I was so shocked, because I had never even thought of him as physically disabled, and shocked that another kid would make a comment like that anyway, but I didn't even have to respond. The words were hardly out of her mouth before the whole rest of the team (peers only; our coach was not in the room at the time)turned on her and angrily took her to task.
I was only 12 or 13 at the time, but it made a huge impression on me. The fact that I did not have to be the "first responder" in dealing with this particular verbal injustice aimed at my family member because others beat me to it meant a lot. I think it also had quite an impact on the girl as well. Certainly I never heard her mock anyone with a disability again, because she had been so firmly told, by her peers, that such an attitude was unacceptable. One hopes that eventually she changed her own mind and not just what she let come out of her mouth.
But, as you note with your example of the athletic centre, minds and words are one thing; funding and services are another. And I know that my father was only able to walk even as well as he could at that point because he had previously been able to access services that helped him with his physical needs, and then was encouraged to remain physically active through what sports he could find acceptance in. (In his case, softball, where he became a pitcher.) It was only in speaking with mother about the incident with the girl that I realized why my father's softball team and his ability to play had been of such central importance in our lives. And I ask myself, what would his life, and our family's life, have been like if he had not been accepted on that team, and in other spheres as well? Better yet, what would his and our lives have been like if he hadn't had to fight for even that small acceptance?