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Searching for My Role Model as an Adult With Cerebral Palsy

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Growing up with cerebral palsy (spastic diplegia) in the U.K., I received a lot of input from health professionals. There were physiotherapy sessions, special shoes, gaiters, a wheelchair, occupational therapist, offers of surgery and Botox injections. My condition was under consistent scrutiny – being told to walk up and down and up and down while doctors watched how I moved, placing white dot stickers on my joints so a computer could track my gait. Many sessions involved therapists pulling my bent legs up to measure the angle of my knee and test my flexibility.

I was never the best patient, always pushing away anything that made me different from my peers, looking upon my scuffed Piedro boots with scorn, despising the daily exercises and abandoning my wheelchair at the hospital as soon as my parents would allow. However, now that I am an adult, I am retroactively grateful for all the efforts of health professionals.

After a lifetime of medical input though, you hit the age of 16-18 and everything stops. After spending your life being told about what sort of things to expect and what can be done for you, you are thrust into adult life more or less alone. I understand this in a way – you have been told everything you need to know and how to deal with things, what more is there?

Have you ever tried searching about cerebral palsy online? The majority of results are directed towards the parents of young children who have the disability. As I navigate the already confusing world of adulthood, I am left asking – where’s my disabled role model?

I try to work out what my limits are, battling things like daily fatigue and questioning – is it normal? Is this the CP or is it just me? I search online about CP in adulthood and am only confronted with articles about my chances of developing complications like arthritis and joint pain as I age. Something to look forward to!

It is well known that media representation of disabled individuals is severely lacking. I am often left yearning for someone to make me feel less alone as an adult with CP, to tell me what to expect and that everything will be all right. This isn’t really realistic though, is it? Everyone experiences disability differently, and where CP is concerned, this is especially the case. It can vary hugely in its degrees of severity.

I suppose I am left to find out things for myself. I have to find out what is “normal” and what is not for me and mark my own boundaries and limits.

I will have to be my own role model.

Getty image by Ben Schonewille.

Originally published: December 9, 2018
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