Disrupting the Disabled/Normal Divide

blog post by A/Prof Barbara Gibson

My new book Rehabilitation: A Post-critical Approach was written to help rehabilitation students and practitioners make the links between the critical scholarship and what it might mean for practice. A key chapter in the book explores how as a society we think about ‘normal’ as a preferred state of being, and how this is carried over into our rehabilitation practices. Here I provide an overview of this discussion. Normalizing practices in rehabilitation help sustain negative attitudes towards disabled people and deny the richness of human diversity. In making this somewhat provocative statement my purpose is not to suggest that all rehabilitation practices are focused on normalization, nor is it to suggest that practices aimed at approximating normal (function, behaviours or social roles) cannot be helpful. Rather my goal is to demonstrate some of hidden effects of rehabilitation (including physiotherapy) practices that may not always be recognized because they are not immediately obvious. One of the ways to do this is to trouble the normal/disabled binary that is common in rehabilitation talk and practice. The ‘normal/disabled binary’ simply refers to how humans tend to group each other into either/or categories. You are either disabled or not disabled. The binary opposite of disabled is most often construed as normal. While some people have discomfort with the claim that rehabilitation is aimed at normalization, if you hang out in rehabilitation departments, talk to clinicians and ‘patients’, and read rehabilitation literature you will see it everywhere. For example, ideas of statistical deviance from established norms are built into standardized measures used to determine what counts as a problem amenable to intervention. We also see it in our definitions of rehabilitation such as in Miller-Keane's (2003): The process of restoring a person's ability to live and work as normally as possible after a disabling injury or illness. Statements like these are ubiquitous in rehabilitation and largely considered unproblematic. Rehabilitation is not oriented to cure but rather to re-establishing physical and social 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. Programs are designed to address individual problems as defined by rehabilitation: the amputee program, stroke, traumatic brain injury, paediatric, geriatric, physical rehabilitation. Each program is part of a system and a society that understand disability a particular way, as a problem of one kind or another that can be labelled (diagnosed) and grouped according to set categories and admission criteria. Through these techniques of categorization, disability is made into the object of intervention, something that can be addressed, helped, fixed, eased. Made normal.

Rehabilitation arguably preceded other health fields in recognizing the social determinants of disability and in refocusing interventions away from ‘fixing’ impairments towards enabling social participation, most notably through embracing the ICF as a guiding framework. The move towards holism, to seeing the patient in a context, however (still) relies on particular ideas of disability and normality. Rehabilitation seldom reflects on its view that to be ‘like everybody else’ is the best possible outcome. Why, we might ask, is difference, by default, something to be avoided, repaired, or obliterated? Is there another way of understanding disability that might be useful to our practices? The work of post-critical scholar Margrit Shildrick is helpful in this regard. She suggests resisting the oversimplified binary of disabled/normal to recognize the irreducible variations and vulnerabilities of all of us. In this way we acknowledge a multiplicity of bodily differences without trying to contain differences within categories such as disability/ability or normal/abnormal. This is a powerful idea that requires a philosophical shift, not to discard the norm but to deflect its power, to use it reflectively, and to see it as one way amongst others of thinking about differences. What does this mean for physiotherapy 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. Rehabilitation undoubtedly helps, but as part of a social system of normalizing practices, it may also harm in other ways. Negative valuations of disability are socially pervasive and are taken up by individuals as self-evident. Included are ‘patients’ who often want to be normal or return to normal, as much as or more so than their clinicians (Amundson 2000; Gibson et al. 2014). But things could be otherwise. Physiotherapists and other rehabilitation professionals have an opportunity to promote counter-narratives of disability, to assist individuals to pursue alternative life scripts that do not rely on notions of normality. A more open approach partners with the recipients of care to re-imagine what counts as a positive outcome. For example, paid work may not always be possible or desirable for some people, and other pursuits such as caring for others, sustaining relationships, or managing personal care needs may take on a greater significance (Aitchison 2003). Doing so requires deep reflection about the program and services made available to clients, and what constitutes good or poor outcomes. It relies on providing space for reflective dialogue with clients whose values may shift in light of bodily changes and experiences. An important task is to recognize the many ways that people labelled as disabled are marginalized and determine how best to assist individuals to attain or maintain a positive disability identity within the context of their therapeutic goals. To assist with these efforts, professionals need to reflect on their own assumptions and how these are reproduced in their practices. References Aitchison, C. 2003. From leisure and disability to disability leisure: Developing data, definitions and discourses. Disability and Society 18(7): 955–969. Amundson, R. 2000. Against normal function. Studies in History and Philosophy of Biology and Biomedical Sciences 31(1): 33–53. Gibson, B.E. 2014. Parallels and problems of normalization in rehabilitation and universal design: Enabling connectivities. Disability & Rehabilitation 36(16): 1328–1333. Miller-Keane and O’Toole, T.M. 2003. Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, 7th edn. Philadelphia, PA: Saunders.

-oOo-

Barbara Gibson is the Bloorview Children’s Hospital Foundation Chair in Childhood Disability Studies; Associate Professor, Department of Physical Therapy, University of Toronto; and Senior Scientist, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital. Email: barbara.gibson@utoronto.ca Twitter: @BarbptToronto