Stop portraying disability as tragic or inspirational
Disabilities be seen as part of a continuum of abilities
A colleague of mine, Crystal Chin, is a young woman with cerebral palsy who now uses a wheelchair for mobility. Crystal spent a huge amount of her childhood in therapy trying to walk independently. Nobody ever asked her if the goal of walking was important enough to spend so much of her childhood trying to achieve it.
Crystal went to physiotherapy five days a week, and her well-meaning parents did nightly exercises and stretches with her, integrating “therapy” into everyday life through constant correction of how she moved. This went on for years and Crystal says the constant scrutiny sent a clear message to her that she was “just not good enough.”
Living as a disabled person can pose challenges and many of these can be helped with medical care and treatment. However, disabled people will tell you that the majority of challenges they face are not related to their bodies, but to material barriers such as lack of ramps, closed captioning or Braille texts, or to attitudes of others who assume they are “less than.” By actually listening to disabled people, we realize they are “disabled by” their worlds more than by their bodily differences.
Through my research, I have discovered that young children do not necessarily perceive disability in negative terms.
Instead, they are curious and welcoming of differences. Those who use walkers and wheelchairs may take special pride in their devices, and other children may want to try these out or “go for a ride.”
However, as Crystal’s story demonstrates, over time kids learn that their differences can negatively mark them as different or “just not good enough.” The attention of wellmeaning parents, health professionals and teachers who try to “fix” difference sends this message loud and clear.
Children, like all of us, are also constantly bombarded with messages in popular media that present disability as a tragedy or as some kind of heroic battle. In a recent TEDtalk, the comedian and wheelchair user Stella Young says that inspirational images objectify disabled people for the benefit of nondisabled people, who look at them and think “things aren’t so bad for me.” Disability advocates like Young have long argued for alternative, diverse representations of disabled people.
I recently interviewed a 16-year-old young man who uses a wheelchair. He lamented that he was never allowed to do the “awesome stuff” that his peers were doing, because the adults around him were worried about his safety.
He recently had the opportunity to ride an ATV and said: “My whole life, I’ve been wearing this thing (lifts up his wheelchair seatbelt). I’m not that kind of person. I’m the kind of person that would take risks. I don’t want to just live my life as a boring person — seeing everyone do awesome stuff and me doing nothing, that’s stupid. But (the ATV ride) felt so good, even though I was sitting on the wheelchair with a seatbelt on. I felt like ‘oh my God’ ‘cause they were letting me go free. That was awesome.”
This young man’s experience reminded me that adolescence is often a time where kids test out their abil- ities and take some risks. Why should this be different for a disabled child?
Here are some alternative ways of thinking and talking about childhood disability:
Disability can be seen as part of the diverse human continuum of abilities. Some people may be more disabled than others, but often much of this can be attributed to the barriers built into society. For example, using a wheelchair is not a “failure,” it’s a different way of getting around that would be much easier with the availability of accessible spaces.
Let kids be kids. Therapy can be an aspect of a child’s life, but not everything they do should be oriented to therapy. Kids want to play, be with friends and have fun.
Disabled people may welcome help from medical and other professionals, but professionals should not assume that differences are always problems that need to be fixed.
Children learn from adults how to think about differences. Therefore, we should avoid presenting stories of disabled people as tragic or heroic just because they are different. Dr. Barbara Gibson is an associate professor in the Department of Physical Therapy at University of Toronto. She is a senior scientist at the Bloorview Research Institute at the Holland Bloorview Kids Rehabilitation Hospital. Gibson holds the Bloorview Children’s Hospital Foundation Chair in Childhood Disability Studies. Crystal Chin was born in Taiwan where she was diagnosed with a neuromotor condition at 8 months of age. She immigrated to Canada during late childhood. She is currently a youth/ patient adviser at Holland Bloorview Kids Rehabilitation Hospital. Doctors’ Notes is a weekly column by members of the University of Toronto’s Faculty of Medicine. Email doctorsnotes@thestar.ca.