Patient Engagement

Bridging the Normal/Disabled Divide

How disability is understood and addressed in healthcare practices has been critiqued by disability scholars and advocates for the last 30 years and yet we see little of this critique in our professional journals, websites, or conferences. The following is an edited excerpt from Chapter Two of my new book, Rehabilitation: A Post-critical Approach (Boca Raton: CRC Press), which explores how narrow conceptions of disability and normality structure health care practices.

Rehabilitation is not oriented to cure but rather to re-establishing physical and social function. Following injury this represents a return to previous function, or the closest possible approximation. For those with life-long impairments it is also an approximation towards something. What? The answer can only be normal:  normal bodies, normal activities, and/or normal social roles. ‘What are your goals?’ the clinician asks. And s/he takes this seriously, explains how they may be achieved (or not) through a series of steps, broken down into long term and short terms goals. But rehabilitation as part of a cultural and juridical set of healthcare norms is set up to accommodate some goals and not others. Some are declared unrealistic.  Others are deemed necessary: ‘You cannot go home unless/until you can get up those stairs’.  Through the background logics that organize practices, disability is made into an object of rehabilitation, something that can be addressed, helped, fixed, eased. Made normal.  Normality is positioned in opposition to disability which is constructed as the problem requiring intervention.

What is meant by disability? Disability is thought of in many different ways that are held in tension and form the basis of intense debates particularly in the interdisciplinary field of Disability Studies (Thomas 1999).  What does it mean to claim that all of us move in and out of disability? Can disability be desirable? The answers depend on how disability is defined, understood and/or experienced. Function occurs across a continuum without a bright line separating disability and ability. Desirable?  Many in the Deaf community claim Deafness as a cultural identity not a deficit (Skelton and Valentine 2003). But then again Deaf people would be unlikely to characterize the inability to hear as disability, so they are not claiming ‘disability’ is desirable.  A tension is thus revealed. What is disability? Is it the opposite of ability?  Or something else?

The so called ‘medical model’ still holds tremendous sway in healthcare (Hammell 2006). The medical model conceives of disability as an individual problem that arises because of a biologically dysfunctioning body part or system.  Clinically the focus is most often either on repairing/ restoring the biological body, and/or maximizing an individual’s existing abilities and modifying their immediate physical environments. Contemporary healthcare practices reflect a dominant cultural belief that the social disadvantages that ‘disabled’ individuals experience in daily life arise primarily from their impairments, even while acknowledging the influence of material and social ‘barriers’  that contribute to disablement. Disability studies complicates this view to assert that persons are largely disabled by material, social, cultural and political environments.

What is normal(ity)?

According to Lennard Davis (1997), the disabled body was invented in the 19th century alongside the development of the statistical norm. The idea of norms and averages grew directly from an increasing interest in statistically mapping the distribution of human characteristics.  With the ability to map human characteristics in terms of deviations from the norm, an insidious shift occurred whereby the average became the ideal.  The introduction of the concept of the norm suggested that most of the population could and should be part of this norm, and that deviations could be addressed for the general betterment of a population.

The idea that the population could be ‘normalized’ was expressed both in a mathematical and a social sense, and as such the early statisticians were also prominent eugenicists of their time. Evolution suggested that the weakest ‘defectives’ of a species would be weeded out by natural selection, and eugenicists looked for methods to identify and eliminate defective traits in other ways e.g., through the forced sterilization of ‘mentally defective’ women. Conflations of physical and moral failings persisted as physical differences became synonymous with personal character and placement on the bell curve.

This is the invention of ‘disability’. Far from being conceived of in neutral terms as part of a spectrum of human variation, deviant bodies were constructed as problems to be fixed or eliminated.  While the eugenics practices of the past have been condemned, achieving or approximating normal continue to drive much of what is done in the name of services designed to help disabled people. This includes healthcare interventions focused at helping individuals to reintegrate through normalization.

Rehabilitating Normal/Disabled

What does this mean for healthcare and rehabilitation?  First of all there is a need to acknowledge that normal drives intervention; not to say it is ‘wrong’ but rather to consider its effects, both positive and negative. Clinicians help people to achieve normal tone, normal range of motion, normal gait patterns, normal speech, normal occupations; to engage in typical activities of school or work, to live normal lives. When normal is not possible or practical, then the goal is to approximate it, to get as close as possible. These ideas are reflected in common rehabilitation measures and how good and poor outcomes are defined (see my earlier Wither ‘Quality of Life’ Post).  While these approaches may be helpful in many ways, this should not be the end of the conversation.

Healthcare has the potential to provide a key sight for resistance to normalisation. When persons with newly acquired impairments only focus on approximating ‘normal life’, other possibilities will be closed off. Clinicians have an opportunity to assist individuals to pursue alternative life scripts that do not rely on pursuing normality.  Doing so requires deep reflection about what constitutes good or poor outcomes.  It relies on providing space for reflective dialogue with clients and families whose values may shift in light of bodily changes.  An important task is to determine how best to assist them to attain or maintain a positive disability identity within the context of their therapeutic goals. To assist with these efforts, all health professionals need to reflect on their own assumptions and practices. Categories and concepts that carry the weight of tragedy – disability, dependency, abnormality – need to be rehabilitated.  Practices can be mobilized to help people adjust to and create new realities that do not have to be constructed in relation to preconceived norms.

References

Davis, L. J. 1997. Constructing normalcy. In The disability studies reader, ed. Lennard J. Davis, 9-28. New York: Routledge.

Hammell, K. W. 2006. Perspectives on disability and rehabilitation. Edinburgh: Elsevier.

Skelton, T., and Valentine, G. 2003. ‘It feels like being deaf is normal’: An exploration into the complexities of defining D/deafness and young D/deaf people’s identities. Canadian Geographer 47 (4): 451-66.

Thomas, C. 2007. Sociologies of disability and illness: Contested ideas in disability studies and medical sociology. New York: Palgrave MacMillan.

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