By Barbara Gibson
Rehab professionals want to help improve the lives of children with disabilities. But they sometimes struggle with two conflicting visions of how to do that.
Is their role to "normalize" bodies that are impaired, or to promote acceptance of diverse bodies and abilities?
As a physiotherapist and child disability researcher, I know that “normal” is often taken for granted as a benchmark to assess quality of life. To rate life quality, we often measure the amount of help a person requires to carry out daily activities. Our questionnaires assume that the more you do on your own, the better life will be. So walking independently gets a higher score than walking with a cane. And walking with a cane rates higher than using a wheelchair.
By assessing physical abilities alone – and ignoring social influences on wellbeing like relationships, security and expectations – these measures reproduce cultural biases about what constitutes a good life and inadvertently reinforce exclusion. On these measures children with disabilities are marked as “other” and in need of intervention.
Of course cultural values about disability don’t originate in rehab. They reflect societal values.
Developmental psychology is largely responsible for the concept of the “normal child.” Bodies which can’t be fixed through surgery, therapy or medications fall outside the limits of normal development and bear the stigma of pathology.
New parents are a good barometer of mainstream ideas about disability. Many parents of infants with disabilities come to rehab with high hopes that surgery, drugs and intense physio will cure their child – or dramatically reduce differences – and the willingness to “do whatever it takes.”
Because of the value placed on normality, parents – particularly mothers – find themselves caught between pushing for intervention and defending their child’s worth. They are put in the paradoxical position of saying to their child “I love you as you are” and “I would do anything to change you.”
When parents have unrealistic expectations, rehab therapists struggle with how to support these families while not destroying their hope.
Walking is an example of a rehab goal that is a taken-for-granted good in children’s rehab. Intense walking training is built into the system in a way that largely precludes parent decision-making about whether or not to have treatment. In Canada, preschool children routinely receive intensive publicly funded standing and walking therapy two to three times per week. Use of walkers and powered wheelchairs may be discouraged until other options have been exhausted. Many parents seek out additional private therapies – often at great monetary and time costs.
The focus on walking (from formal therapy to home and community programs to conductive education camp) can fill up days – leaving children little time to just be kids.
Because their bodies have been identified as in need of fixing, children themselves come to understand that they fall outside an accepted norm. In our culture, in addition to conveying mobility, walking and “standing on your own two feet” symbolize a whole set of moral virtues – including dignity and autonomy. The drive to walk can create an overfocus on bodies and therapy.
And even with intense therapy, some children won’t ever become walkers or will use wheelchairs to get around some or all of the time. (As they age, we are better able to predict the walking abilities of children.)
Studies with self-reports from children show they are keenly aware of how others stigmatize them. Interestingly the same studies find children don’t necessarily internalize this stigma or identify themselves as disabled. This may suggest that children are less concerned with walking and more concerned with being able to get around.
A study of adult wheelchair-users revealed a distinction between the way they viewed their wheelchair positively as children, and the negative views their parents held of the wheelchair. Many stopped associating “not walking” with a medical condition. Wheeling became a normal mode of movement. This shift in attitude helped wheelchair users gain a positive identity and achieve life goals in spite of the stigma attached to wheelchair use.
In my own research with children with cerebral palsy, children were conflicted and ambivalent about the value of walking. When choosing whether to walk, crawl or wheel, they considered the amount of energy needed, the activity, the environment and their preferences. They resisted negative views of disability by expressing pride in the speed, colour or features of their devices and in identifying themselves as wheelchair users.
However, children over the age of 11 expressed that it was important to be identified among peers as “someone who can walk.” These findings help demonstrate how children are socialized to divide the world into walkers and non-walkers. They learn a dominant message, reinforced by years of rehabilitation, that non-walking and non-walkers are problems to be fixed.
Promoting acceptance of diversity and difference are given short shrift in rehab compared to the amount of time, energy and money spent on achieving, or moving closer to “normal:” normal bodies, normal behaviours, normal movement, normal activities.
There is positive change in the way the rehab world views intervention. The introduction of the World Health Organization’s International Classification of Functioning, Disability and Health puts the rehab focus on social participation rather than fixing bodies, and acknowledges that function results from many influences.
But the politics of disability are still largely absent in rehab talk.
This is where cross-pollination between rehab professionals and disability studies researchers is invaluable. Rehab researchers who are immersed in disability studies (like me!) are in a unique position to challenge rehab assumptions from within. We need to encourage our colleagues to think differently. And rehab professionals have a wealth of knowledge and experience to help children reach their full potential – knowledge that isn't always recognized or appreciated in the disability studies community.
Barbara Gibson is an associate professor in the Department of Physical Therapy at the University of Toronto, and a senior scientist in the Bloorview Research Institute.