The article below appears on Ramp Up http://www.abc.net.au/rampup/articles/2013/07/29/3813511.htm
It’s Cerebral Palsy Awareness Week folks! It should be a time when I can see my body and my experiences reflected in the images and in the issues which are being brought to the public domain.
It’s Cerebral Palsy Awareness Week folks! It should be a time when I can see my body and my experiences reflected in the images and in the issues which are being brought to the public domain.
So I
go online to try and find myself, and am informed that there are 33,000
Australians with CP - that’s one in 400 babies diagnosed every year. I see
children who could have been me, bent legs, bodies held in walkers, smiling.
But their smiles unsettle me and remind me of my childhood.
You
see, there is an untold story behind their smiles, behind these images which
most people see as inspiration, bravery, of children overcoming their
disability. A story never told in the awareness campaigns is the one that
destabilizes these happy images - how the forced normalisation practices can
lead to long-term mental health issues. This is what I wish would be part of
the public discussion and awareness this week.
What
are the psychological effects from a childhood spent being subjected to
painful, intensive and intrusive therapy regimes, which have the effect of
reinforcing negative messages about a core, inescapable part of who we, as
people with CP, are? For me, it has been depression, suicide attempts and major
anxiety as I tried to find a way to live within a body so interconnected with
my emotions, a body which I was given no positive way of connecting to. I was
left with only shame, guilt and an inbuilt feeling that I was inescapably
wrong.
My
early childhood photographs could have seen me included as a poster child for
Cerebral Palsy Awareness Week. My lips stretched into a smile as I stood up as
straight as this bent body would allow, knees held back in pain, my body pinned
for hours in a standing frame.
I was
the gold-star child at my special school, that brave little kid who could take
more pain every day than all the others. I never cried no
matter how much it hurt. I was told the CP mantra that many people who live
with CP would remember, which was, ‘no pain no gain’. I repeated it over and
over while I tried so hard to walk, to be ‘normal’. I thought if I kept trying
with everything my five year old body had, I could push this thing out
of me, the CP.
I
spent 12 years from the age of two to fourteen attempting to normalise my body.
I tried to make it straighter, fighting against the natural tense state of my
muscles. This normalisation, this Holy Grail, was the focus of my life and my
family’s life. Unbending this bent body came before everything else, before
developing the capabilities or interests of my mind, before other aspects of
the rest of my personality. I would succeed, I would walk, if I just went
through the pain every day. I would overcome this CP, push it out of me. I
would become ‘normal’ because I was so determined, and I was so brave.
I
spent 12 years hearing and feeling the message that my CP, my very body, my
muscles were so very wrong. But as time progressed, I realised that the CP
wouldn’t go. It was there. Inside me. Every time I got upset, my muscles would
tighten along with my emotions. Every time I got excited, scared, right there,
it was in my muscles, inside me. It wouldn’t leave even with all the exercises
and painful stretches every day. All this pain and still, I couldn’t expel it.
Every
day of my life I would have to be hurt by the exercises, for hours. I was told
that if I stopped the interventions on my body, that thing, that hell on earth,
would come for me. I would end up in a wheelchair. I reached breaking point at
14. I couldn’t do it anymore. I called stop. Mum and I cried all day and
wondered what future would await me.
The
Wheelchair arrived for me. And I tried to forget how I’d failed. Tried to not
feel this tension that lives inside my body. This tension that connects my
mind, emotions and muscles, was until recent years, a deep source of shame. The
tension is how it feels to live inside my body but it was tied up with a belief
that I had failed, that I was still flawed.
What
does this do to children, and how does it affect them as adults? To reinforce
daily an unattainable notion of the need to be ‘fixed’, of reaching for an idea
of normality that isn’t possible? What happens when we finally, one day,
realise that we will always have Cerebral Palsy?
For me
it created a profound disconnect from my body, and an internalised hatred and
shame toward an intrinsic part of my identity and self.
My
parents had never known anyone with a disability before I came along, and there
are lots of things I wish they were told when I was born. I wish that someone had
told them that my body did
not need to be ‘fixed’. I wish that someone had taught them the
social model of disability, and that it is not the body which needs to be
changed but society. I wish I’d had role models and pictures of others with
non-normative bodies to put up on my wall and look up to. I wish I had been
taught ways to connect with my body as it is and the unique way my muscles and
emotions are intertwined, as I have now learned to appreciate and find
beautiful.
One thing I would
love to see change in my lifetime, is that parents who have a child with a disability
would be provided with contact details of adults living with that disability
which they can call and talk to. This would allow them to hear from those of us
who live the experience. We could provide information on the valuable and
complex experiences of a life lived within a body similar to that infant which
they are now holding. Our voices would then become a part of the picture
alongside that of the doctors for new parents to hear, a guide for them, as
they wonder, scared, how to give their child the best start to life.
