[community] Fwd: Doctors’ Notes: Stop portraying childhood disability as tragic or inspirational.

[William McQueen]

Doctors’ Notes: Stop portraying childhood disability as tragic or
inspirational.
By actually listening to disabled people, we realize they are “disabled by”
their worlds more than by their bodily differences.
Seeing people with disabilities as "inspirational" figures does them a
disservice, critics say.

https://www.thestar.com/life/health_wellness/2016/11/28/
doctors-notes-stop-portraying-childhood-disability-as-
tragic-or-inspirational.html

By DR. BARBARA GIBSONUniversity of Toronto
Mon., Nov. 28, 2016

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 well-meaning 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 abilities 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 at thestar.ca
<doctorsnotes at thestar.ca>*