Barbara Gibson, Associate Professor, Dept. of Physical Therapy, University of Toronto, Senior Scientist, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada, Barbara.firstname.lastname@example.org
In 1993 Mike Oliver posed the question, what’s so wonderful about walking? (Oliver, 1993) and lamented that an uncritical ‘ideology of normality’ permeates rehabilitation. He further commented that ‘(r)ehabilitation constructs the concept of walking uncritically in that it is never analyzed or discussed except in technical terms – what surgical operations can we perform, what aids can we provide and what practices can we use to restore the function of walking’ Others have also been critical of rehabilitation and its fundamental assumptions about disability (Davis, 1963; French & Swain, 2001; Stiker, 2002 (1997)). These ideas however have been slow to reach the audience where they might make the most impact, that is, rehabilitation practitioners, educators and researchers.
Rehabilitation researchers who are immersed in disability studies scholarship such as myself (a physiotherapist) are in a unique position to challenge rehabilitation discourses from within. As someone situated within a Canadian university physiotherapy department and children’s rehabilitation research institute, I have opportunities to speak directly to rehabilitation practitioners either in person or through rehabilitation conferences and publications. This includes working with professionals and students to be more critical of their work and provide alternative frameworks for working through some of their common concerns. In my experience, rehabilitation professionals are committed to helping to enhance the lives of people with disabilities and struggle with the big questions regarding their roles in working to ‘normalize’ impaired bodies versus promoting acceptance of people with a diversity of abilities. A key problem for rehabilitation professionals, in my view, is the lack of a clear framework for working through the function of rehabilitation in the lives of disabled people. Frameworks like the social model of disability are still not well integrated into rehabilitation, which has been more broadly critiqued for lacking theoretical grounding (Siegert et al., 2005) and an under-appreciation the social and political dimensions of disability (Magasi, 2008; Nicholls & Gibson , 2010).
Rehabilitation has come a long way towards recognizing the social determinants of disability and in refocusing interventions away from ‘fixing’ the body towards enabling social participation. Nevertheless there is still much to be done to change some deeply entrenched understandings of disability and the ideals of ‘normal’ that underpin it. The politics of disability are still largely absent in rehabilitation discourses. The introduction of the ICF in 2001 helped accelerate changes to rehabilitation philosophy whereby research development and education increasingly focused on enabling social participation rather than fixing bodily impairments. The ICF divides ‘functional performance’ into three primary components of ‘body functions and structures’, ‘activity limitations’ and’ participation’ and asserts that function is the result of dynamic interaction of myriad factors (WHO, 2001). The influences of ‘environmental factors’ are recognized in the ICF and rehabilitation, but are still discussed in largely apolitical terms and tend to focus on immediate individual factors such physical barriers in the home, personal resources, and family supports. Furthermore, despite some progress, deeply ingrained assumptions about disability as a problem to be fixed still dominate every aspect of rehabilitation. Promoting acceptance of diversity and difference are given short shrift when compared to the amount of time, energy, and money spent on achieving or approximating normal – normal bodies, normal behaviours, normal movement patterns, normal roles, and normal activities.
Walking is an example par excellence of a rehabilitation goal that is a taken for granted good in rehabilitation. Intense ambulation training is a major rehabilitation intervention for disabled children and is built into the system such that there may be very little individual decision making about treatment. In Canada, preschool children routinely receive intensive publicly funded standing and walking therapy two to three times per week. Use of mobility devices and powered wheelchairs may be discouraged until other options have been exhausted, although this approach is beginning to be questioned (Wiart & Darrah, 2002). Many parents also secure supplemental private services often at high personal costs and intensive time commitments for the child and family. Notwithstanding intense therapy efforts, a number of children will not achieve functional walking and/or will use wheelchairs for some or all of their mobility needs (Bottos et al 2001). The focus on walking interventions (formal therapy, home programs, community programs, conductive education camps) can take up so much time that children have limited time to just be kids.
Approaches to children’s rehabilitation do not occur in a social vacuum but are embedded in dominant social and medical discourses that understand disability in particular ways. The dominance of the concept of normal development restricts what variations in children’s bodies and abilities are considered acceptable versus in need of interventions (James, 1995) . Bodies which cannot be fixed through surgery, therapy and/or medications that fall outside the limits set for normal bodies thus risk bearing the stigma of pathology. Parents and children are also subjected to these frameworks of normality. The high value placed on having a ‘perfect baby’ in Western cultures results in parents of disabled children grieving over the ‘normal’ child they did not have (Piggot et al., 2002) . Mothers of disabled children in particular are subjected to competing responsibilities, as both advocates for care and defenders of their child’s worth, thus placing a mother in a paradox of saying to her child ‘I love you as you are’ and ‘I would do anything to change you’ (Landsman, 2003). Nevertheless parents may also resist the dominant narrative of disability that diminish the social value of their child and construct alternative stories that challenge the conventions of normality (Fisher & Goodley, 2007, Landsman 2003).
Through having their bodies singled out as in need of fixing, children also learn to distinguish between normal and different bodies and internalize negative valuations of their bodies and selves. Multiple medical, educational and social encounters reproduce and reinforce what eventually becomes a tacit understanding of social difference, a positioning outside of an accepted norm (Priestley, 1998). Walking and “standing on your own two feet” symbolize a whole set of moral virtues – rectitude, dignity, autonomy, not to stoop to anything and to stand by one’s convictions. The child with motor impairments thus runs the risk of developing an enormous focus on the body and therapies at a very young age (Mulderji, 2000).
Research that incorporates disabled children’s views shows they possess a keen awareness of perceived stigma from others, but do not necessarily internalize this stigma or identify as disabled (Sapey et al. 2005). In my own research, children with cerebral children palsy related conflicting and ambivalent notions about the value of walking (Gibson et al, 2011; Gibson & Teachman, 2012). They weighed complex factors related to energy expenditure, the activity, the environment and their personal preferences when making mobility choices (walk, crawl or wheel). Moreover, they resisted negative views of disability through direct expressions of pride in different aspects of their wheelchairs (speed, colour, functionality) and in identification as wheelchair- users. Nevertheless children over the age of 11 clearly conveyed the personal importance of being identified amongst their peers as ‘someone who can walk’. These findings help demonstrate how children are socialized to divide the world into walkers and non-walkers and internalize which group is valorized or stigmatized. They learn a dominant message, reinforced by years of rehabilitation, that non-walking and non-walkers are problems to be fixed.
I have no desire to vilify rehabilitation or its practitioners or to suggest that rehabilitation does not have myriad positive effects in the lives of disabled children and adults. Rehabilitation is a vital service and I have witnessed firsthand its potential to help people thrive in multiple ways. In writing about the example of walking in children’s rehabilitation, I hope to demonstrate a couple of points. First, rehabilitation could benefit tremendously from reflecting on its own theoretical assumptions and further immersion into the social and political determinants of disability. This could easily be served by more cross-pollination between rehabilitation studies and disability studies. Second, rehabilitation has changed and continues to change in promising directions. The ICF may not be the complete answer to the problems of the medical/illness model, but it is certainly a substantial improvement. Practitioners and researchers are becoming much more reflective about the goals of rehabilitation for disabled people beyond addressing impairments. I would encourage those working in disability studies to engage with rehabilitation practitioners (and vice versa) at every opportunity. Moreover, I would encourage those of us working from within rehabilitation to continue to ‘work the margins’ and challenge our colleagues to think differently. These kinds of partnerships cannot help but accelerate positive changes towards meeting the rehabilitation needs of disabled people on their own terms.
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