OPEN PAPER AS PDF
In thinking about the situation
of disability movements, be they considering the issue of rights
or removing a barrier or re-affirming a cultural position, and in
contemplating the positioning and re-positioning of disabled bodies,
I wish to think about the labels and terms we use to separate and
devalue or value bodies. I am moved to reflect on my own experience
as someone with a visible disability and as someone with an invisible
learning disability, now juxtaposed with my learning as a disability
studies scholar and my professional work supporting students with
intellectual disabilities.
I am all at once excited as
I explore histories, witness change and take pride in my role in
the process. My concept of disability is reshaped as I learn and
read more. I understand myself to have many allies and many peers,
as I agree with Irving Zola who describes disability as an open-ended
concept that is fluid-- something that people move in and out. I
come alive with the notion that all bodies have a space and a context
and are a text on which culture is written. A body that writes on
itself reads and responds. My reflection is animated by the work
of Gail Wiess who writes:
Recognizing
the materiality, or more precisely, the materialities, of texts
(including the body as text), is to acknowledge that all texts
are necessarily embodied just as all bodies can be understood
textually. What I am especially interested in establishing is
not that text can be reduced to their materialities or that the
materiality can be reduced to textuality, but rather that the
body serves as a narrative horizon for all texts, and, in particular,
for all of the stories that we tell about (and which are indistinguishable)
from ourselves. (Weiss 2003 p. 25)
The body becomes both the
artist and the canvas for the social imagination. I hope to make
use of this interplay between the duality of artist and canvas as
I reflect on the larger collections of text “we” as
a social body produce in the various disability movements we participate
in. This reflection is a preamble to a larger process which is still
a major work unfinished. I wish to explore my perception of the
siloing and neo-liberal approach to disability movements. To this
I will employ my lived-narrative osolating between my different
roles and varied relationships to disability. My writing is informed
by the work of Lenard Davis (2002). Moreover, my work also relies
on the theorizing of Jim Overbow.
For much of my life, disability
did not exist. Others said I was disabled, at times I felt disabled,
but never did I identify as being truly disabled. Rod Michalko (2002)
discusses the social discomfort that disability brings. He speaks
of the body society privileges and, in his words, prepares a “home
for”… He writes about the silencing of disability and
how it is socially positioned as an uninteresting difference that
is often understood as some how in-human. Michalko’s (2002)
writing exemplifies my early experience of disability. I participated
in the erasure of disability, making it uninteresting and of little
to no value. I did this as a function of moving through my culture,
relating to how Michalko (2002) talks about disability not having
a home in society. I had internalized this sense and decided that
if I was going to be at home in society, I needed to be as far away
from disability as possible. I made it my life’s work to not
appear disabled, and-when that wasn’t possible, I worked to
qualify my personhood. In school, a case for my inclusion was made
by stating “I was smart; my legs just didn’t work”.
I preferred to wheel home rather than take the “accessible
bus” so as not to be associated with students identified as
having intellectual disability. I used words like “crazy”
and “idiot” as a way of reaffirming my normalcy. I continually
worked to ensure someone else embodied the disabled other more so
than I. As I reflect on and think about my own experience and early
positioning of disability as a microcosm for the common view of
disability, I am called to think about how this mirrors the values
and social positioning of disability within society. The western
capitalist society thrives on the notion of the individual repeatable
body. Leonard Davis (2002) explicates the onset of the concept of
normal as coming to be in the early to mid nineteenth century period
with the onset of statistics. Prior to that point in time, only
the notion of the ideal permeated society. He says:
Before
the rise of the concept of normalcy, there appears not to have
been a concept of normal; instead the regnant paradigm was one
revolving around the word ideal. If people have a concept of the
ideal, then all human beings fall below that standard and so exist
in varying degrees of imperfection. The key point is that in a
culture of the ideal, physical imperfections are seen not as absolute
but part of a descending continuum from top to bottom (101).
Davis’ point allows
for the notion that the privileging of specific bodies over others
is not a “natural” interaction but one that is socially
produced. He is able to explicate the onset of the notion of the
privileged and unprivileged body (“normal” and “abnormal”).
Davis contends that the notion of “normal” stems from
the creation of statistics. He writes:
Around
the beginning of the nineteenth century in Europe, we begin to
see the development of statistics and of the concept of the bell
curve, called early on the normal curve. With the development
of statistics comes the notion of the idea of norm (101).
Davis further explicates the
climate this is normal curve is able to create he continues,
In
this paradigm the majority of bodies fall under the main umbrella
of the normal curve. Those that do not are at the extremes –
and therefore abnormal. Thus there is an imperative placed on
people to conform, to fit in, under the rubric of normality. Instead
of being resigned to a less than ideal body in the earlier paradigm,
people in the past 150 years have been encouraged to strive to
be normal, to huddle under the main part of the curve (101).
Davis’ work sets the
theoretical stage for the birthing of the notion that one body is
privileged over another, that one disability to be deemed more valuable
then another The notion that there is a “normal” body
and an “abnormal” body allows for a physically disabled
woman to find refuge in statements like “I am smart; my legs
just don’t work”.
Further, the notion of the
“normal” and “abnormal” body allows for
disability and embodied difference of any kind to become an uninteresting
personal mishap that is at best erased and at worse made to be less
deviant through the juxtaposition of another’s body. It is
not to say that the existence of the “normal curve”
allows for this division of bodies, but rather considers how the
concept of normal is taken up within contemporary culture. This
phenomena can be witnessed through the division of labour that is
capitalism. Capitalism, Davis suggests, imagines that every worker
occupies an equitable “starting position” with respect
to access to the resources they need to survive and function. This,
clearly, is not the case. Workers, in fact, occupy a myriad of very
different positions (race, gender, education, ability/disability)
with very different access to resources, and all workers have less
access to resources than do capitalists. Capitalism, essentially,
cannot acknowledge these differences, this inequality of access
to resources, because to do so would challenge the very foundations
of the capitalist economic system itself. Davis (2002, p. 104) writes,
Capitalism
conceptualizes equity as equality among workers among workers
rather than as financial equality—since the latter would
eliminate the difference in capital between the ruling class and
the workers therefore eliminate capitalism.
Davis then goes on to acknowledge
an incongruence in the philosophy of enlightenment thinkers who
advocate for the liberty and freedom for all. He says capitalism
must somehow create an explanation for why some would have more
resources and capital than others. Davis (2002, p. 109) cites the
notion of the “normal” curve as the basis for just such
an explanation – and, ultimately, a justification –
writing,
The
concept behind normalcy allows for such an explanation. If you
take the bell curve as a model you notice that all variations
fall into the unremitting logic of this distribution. […]
Therefore it is logical to say that something like individual
wealth will conform to the curve of normal distribution –
on one side will be the poor; in the middle, people of means;
and on the other extreme, the very wealthy.
Davis (2002) illustrates the
use of normal distribution as a justification for the uneven distribution
of wealth within capitalism. His writing begins to explicate the
social productions of divisions between the disabled bodies. “Normalcy”
encompasses only some people, and others have to struggle to fit
in. This is a situation of not being understood as the normal body,
of not being able to huddle under the normal curve. The next best
thing seems to be to separate oneself from their disabled identity
and or create a spectrum on which you are more “normal”
in comparison to another body. It is this interaction I am fascinated
by. It is this interaction in which I ground in my lived experience,
minimising my not being able to walk by privileging my intelligence.
This also applies to the experience of hearing one disabled person
state that they have more value because they are not living with
another disability. For example, Jim Overbow (1999) discusses the
social production of valuing individuals through the devaluing of
others. He writes
Paradoxically,
the image of the disabled hero validates the lived experience
of a few disabled people and invalidates the lived experience
of the majority of disabled people because they cannot meet such
expectations. (Overboe, 1999, p. ?).
Overbow’s work can be
used to explore what is done when the “normal” body
is privileged over the disabled body or when one identity is given
status over another. When I choose to wheel home rather than take
the bus with students who were identified as intellectually disabled,
what did or what does that do to their status? Overbow’s (1999)
work interrogates this interaction saying, that it is not the quest
for normalcy we should pursue, but the re-organizing of society
to promote the value of all. This concept, this idea that there
is a normal center and by marginalizing other bodies even with the
voice of another’s oppressed body, one can better obtain normalcy.
How does this inform our social movements? What does this do? It
is my sense that when marginalization is understood as a manifestation
of social organization and not a hallmark of individual deficit
that lasting and effective social change can be created. I have
submitted this paper as a conversation starter. A first step in
an academic journey to explore how we build collations and re-organize
spaces so that rather than pitting disabled experiences against
each other, we can create a collective voice for change.
Bibliography
Davis, L (2002). Bodies of difference: Politics disability, and
representation In Synder, S, Brueggemann, B, Garland-Thompson, R
(Ed.), Disability Studies: Enabling the Humanities. New York: The
Modern Language Association of America. (pp.100-106).
Michalko, R. (2002).The difference
that disability makes. Toronto: University of Toronto Press
Overboe, J. (1999). ‘Difference
in Itself’: Validating Disabled People’s Lived Experience.
Body & Society 5 (pp. 17-29).
Weiss, G. (2003).
The Body as a Narrative Horizon. In Jerome ,J, C,&G , Weiss
(Ed.), Thinking The Limits of the Body (pp.25-39).
|