CHRISTINA PAPADIMITRIOU
FROM DIS-ABILITY TO DIFFERENCE:
CONCEPTUAL AND METHODOLOGICAL
ISSUES IN THE STUDY OF PHYSICAL DISABILITY
I. INTRODUCTION
This paper discusses conceptual and methodological concerns in the study of
physical disability and the human body from the perspective of a
phenomenologically informed sociology. I The study of physical disability
and the human body has claimed the attention of philosophers, social
scientists, psychologists, physicians, public health administrators, insurers,
and so forth, each of whom brings a unique disciplinary perspective as well
as distinct research interests and goals. In this paper I identify theoretical
and conceptual biases in the study of disability that: (I) tend to narrow its
understanding to a unitary phenomenon, i.e., as a dysfunction (either pathophysiological or psychological) affecting only the individual; (2) hamper its
conceptualization as a form of difference; and (3) restrict the ability of
persons with disabilities to live independent and respectful lives. Further, I
demonstrate how socio-political conceptions of disability raise many
theoretical and practical questions regarding research, as well as fostering
the uncritical use of notions of normality and difference. 2 Contemporary
research on disability and the human body is faced with a challenge: to
describe and analyze the world of disability within its social, political and
human contexts without perpetuating biased assumptions, ignoring bodily
differences, and marginalizing the experience of disability.3 This paper
suggests that a phenomenologically-informed sociology can help researchers
meet this challenge. Instead of seeing able-bodied and dis-abled persons as
separate and opposed, disabled embodiment may be conceived as a form of
human diversity, thus moving towards an understanding of dis-ability as
difference. This paper discusses how researchers can reach this
understanding through the phenomenological technique of bracketing and
by listening to the criticisms offered by disability advocates and writers.
II. THEORETICAL AND CONCEPTUAL ISSUES
Exposing major problematic assumptions in the study of disability, such as
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S.K. Toombs (ed.), Handbook of Phenomenology and Medicine, 475-492.
© 2001 Kluwer Academic Publishers.
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CHRISTINA PAPADIMITRIOU
able-bodied bias or ableism (Davis, 1995), clarifies and refines our understanding of the phenomenon of disability in its social context. These biases
are most visible and pernicious in social-psychological studies of disability.
In contrast, socio-political conceptualizations of disability present preferred
ways of understanding disability.
The first ableist biasing assumption in the socio-psychologicalliterature
is that disability is a catastrophic and tragic event in a person's life. Persons
with disabilities are assumed to be victims of unfortunate circumstances,
struggling to find positive meaning in what happened to them, or blaming
themselves for their misfortune (Bulman and Wortman, 1977). From this
point of view, "victims" are seen as either trying to camouflage their pain
and suffering, or trying to find some good in their tragedy. Assumptions
about how persons with disabilities cope with chronic conditions have been
drawn primarily from developmental models of "adjustment." That is,
coping and adjustment theories anticipate that persons who experience
physical disability will pass through a series of stages of adjustment, such as
mourning, shock, denial, anger and depression, similar to those of a
bereavement process (Weller and Miller, 1977). The epistemological
problem with this assumption is twofold: First, such analytic formulations
and explanations of behavior are deterministic and prescriptive; the theory
of stages of adjustment is taken to be valid in and of itself and is
superimposed on the experience of the person with a disability. Thus, this
analytic model determines the phenomenon without first examining,
describing, and observing it in its own terms. Second, adjustment theories
result in methodological inconsistencies since researchers are already
judging and categorizing persons' experiences according to their own
expectations and categories. This does not allow for adequate description of
the variety of responses that might occur nor does it allow us to see how
persons with disabilities actually negotiate their social world.
A second ableist assumption that pervades the socio-psychological
literature is that disability is a biological phenomenon, and, as such, is a
personaV individual problem. From this point of view, disability is solely a
product of biological or physiological dysfunction occurring in an individual
organism, rather than a phenomenon that is the result of discriminatory
social and architectural barriers in society (Fine and Asch, 1988; Hahn,
1988; Oliver, 1990, 1996). To understand disability as a product of biology
rather than as a social phenomenon means to concentrate on the individual
and locate his/her limitations in the body. Alternatively, conceiving of
disability as a social and political phenomenon exposes the environmental