Tonight with Lester Podcast

Differently abled is not is not unabled, it's just different.


Guest : Lisa Joshua Sonn

I am not a sports enthusiast. I get my news about the Olympics and Paralympics off
Twitter, streetlamp poles, the radio and snippets on the evening news. A commentator
recently got my full attention when he reflected on the win of an amputee who used to
be a soldier.
He explained that he was choosing this story of triumph from a number of "awful
stories". This is commonly a space of misinterpretation.
We must all share our stories about how and what we know about people living with
disabilities, those born that way and those given the responsibility in their lives of being
disabled in one or other form. I want to share my learnings about people with
disabilities.
Mostly their stories are not awful, but we are. We don't make space to understand
disability; we don't delve into the miracles, the struggles, opportunities, challenges and
lives of people living with disabilities. There are many among us, some whose
disabilities are not even visible.
I take personal responsibility for being such a non-understanding person before a
traumatic and frightening ordeal left our son differently abled. He, and therefore our
family, became part of this community and found a space to be held, understood and
accepted. One person with a disability is not treated specially or differently, it is an
inclusive club. Everyone is welcome.
At the age of six our son had a stroke-like incident. It came from nowhere and after
batteries of tests, biopsies, consultations with academic universities, medical and
neurological specialists, we were not able to get a clear medical diagnosis. At the age of
eight he had a second stroke-like incident. The symptoms are exactly like the ones we
know of strokes in the elderly. The doctor shrugged his shoulders and said, "I am so
sorry to see you here again, I was hoping it was a once-off freak occurrence." In our
quest for answers we turned to alternative healers, spiritual guides, surrogate healers
and anyone and everyone people referred us to.
The result of the two strokes was cerebral palsy. His left hand and leg impacted
permanently, his speech rectified over time and he had some learning problems at the
beginning. The upside, and there have been many, is that it happened when he was
young enough for his brain to repair itself. He finished matric last year after it was
estimated he would not venture through to high school.
Fourteen years ago as parents we were completely unprepared, as were the doctors and
the school. Babies, teenagers and the elderly are known to have strokes. After the first
stroke, it was suggested we enroll him at a special needs school. As a mum, my rage
poured onto that suggestion. I was not ready to accept that he now had special needs.
Strongly, because of my own prejudice and assumptions about people with special
needs. We moved schools to what we knew to be a more inclusive environment.
Eventually I had to meet my son as he was, not as I wanted him to be. I stared down the
fear and investigated our options. In that time someone who treated him took me by
the hand and said, "What happened to your son is not your fault." It freed me to look at
what was best for him and not what I had done wrong and could do better. It was a big
leap of faith, a gulped pride and with a shamed guilt that I saw how selfish I was, how
scared I was, in my determination to fix my son.
Consciously I knew my fear was also based on the discrimination he would face, in
ordinary environments. My prejudice is pointedly covered by this definition of ableism.
"Ableism is a form of discrimination or prejudice against individuals with physical,
mental, or developmental disabilities that is characterized by the belief that these
individuals need to be fixed or cannot function as full members of society." (Castañeda &
Peters, 2000).
As a result of these assumptions, individuals with disabilities are commonly viewed as
being abnormal rather than as members of a distinct minority community (Olkin &
Pledger, 2003; Reid & Knight, 2006). "Because disability status has been viewed as a
defect rather than a dimension of difference, disability has not been widely recognised
as a multicultural concern by the general public as well as by counselor educators and
practitioners."
After a teacher at his school suggested he try out for swimming I grinned and asked how
that would work? The left side of his body was disabled. In the new definition I learned
how disabled is not unabled. In the world of disability, it is unnecessary to specify that it
is physically challenged swimming. They welcomed us in and we learnt how many life
skills there are to learn in a community free of prejudice and discrimination, just
acceptance as you are and as you aren't. Within a few months our son joined a
swimming club as a disabled swimmer, he went to trials and earned his provincial
colours. He represented Western Province at a few national championships. He was
selected for shotput, javelin and discus. He received gold, silver and bronze medals at
most of these events.
What disabled sport did for his confidence, his pride about what was possible for him, is
priceless.
I appeal to anyone who does not know to change their language, be curious about their
views and challenge their assumptions about people living with disabilities. They are
people first. Most of us are currently able as we do not have a disability. Eventually
when it's our turn, we are going to need each other. This is a suggestion that we prepare
now to live harmoniously, without judgment, but a lot more interest and appreciation of
how it is to live with a disability in a world of ableism.
The space they make for you in that world is where I wish all children could be taught
about life. The skills on how determination, persistence, resilience, opportunities and
challenges look is all-encompassing and once you have had exposure to it, there is no
going back to fear, dismissing people and their potential. The bigger the group of
people who get that nugget, the sooner the Paralympics will be as important as the
Olympics. The stories, trials and tribulations will carry and highlight the victory as
national anthems are sung to honour the winners. There are no losers in that world,
only learners.
I conclude that what the commentator referred to as awful are the stories from which
we will learn much, about how to be human and how to treat people the way we want
to be treated.

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