Forced normalization practices on children with Cerebral Palsy & the long-term mental health effects

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.

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.