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Guest post: "I have cerebral palsy - but I refuse to let it define me"

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MumsnetGuestPosts · 18/08/2015 15:15

"What's the matter with you, then?"

My attitude to this question has morphed through the decades. Aged five, I didn't understand it. At ten, I was angry to be singled out. By twenty, I felt it was very mature to offer a full explanation: "I have cerebral palsy, which I was born with. I suffocated at birth because the doctor did not believe I was in my mother's uterus…". Aged thirty, typically, I felt affronted at the questioner's impudence. At forty, I was so far beyond fed up, I did my best to ignore the inquiry and now, I reply, "I feel great today, thanks; and how are you?" My refusal to be drawn into pointless reflections on the pities of life often annoys my inquirer.

I am not defined by the way I walk. Of course, how my legs and knees work isn't important. And yet, looking back over my life, I can't help noticing how often people and professionals of every hue have misread or underestimated me because when I walk, I sway, stagger and fall quite a lot. The headteacher who denied me entry into her school ("We have the reputation of our girls to think of, we cannot lower the tone!"); the child psychologist who spent a couple of hours testing me and then concluded I would not amount to much; the employer who opined that my presence was bad for his business; the medic who airily declared I would be in a wheelchair at forty. However, some part of me is oddly grateful for others' dismissal of me. Something in that carelessness provokes a refusal to accept "we expect very little from you, dear", and galvanises me to prove the world wrong.

The irony is that I wouldn't have achieved anything – gone through schooling, university, work, marriage and child-rearing, had a book published about my life with cerebral palsy - if I were not so entirely used to being underestimated. Though the sheer effort of proving myself capable has caused exhaustion and depression along the way, contrariness has its uses. During my time as a solicitor, I grew accustomed to handling complex cases at short notice, and was asked to take on 'heart-sink' files that had lingered around the office for twenty or thirty years and which had miraculously turned urgent overnight. Perhaps the intention was to test me, but I dug in my heels, persevered and sorted out most of these files alone. I did finally leave law, but only when my mental and physical stamina were spent.

In the struggle to sort out the good advice from the unhelpful, too often I have been my own worst critic: sold myself short, opted for the less risky outcome. As a young woman I was so fearful of attracting criticism. Now, I care much less about what other people think, though I still have bad days.

Thankfully, I got the important decisions right. My mother thought I would do better not to get married. Little does she know that marriage saved my life. My parents were worried when I became pregnant, and there were endless family conversations (from which I was excluded) concerning whether I would manage. It never seemed to occur to them that my husband would have an opinion, and that he would prove a mainstay of childrearing (he did, and he was). I also found support and encouragement from my GP, my midwife and my friends, which reassured me that I could handle the challenges of parenthood.

Finally, I have managed to cobble together a life of my own choosing, while constantly worrying about my ability to succeed with choices that others seem to take for granted: whether to enter mainstream schooling, whether to continue battling with employment, whether to have a child. I have fought for the 'normal' that so many people thought I could never achieve. Though they might define me by my cerebral palsy, I will never limit myself to others' expectations of what this should mean.

Fran Macilvey is an author and motivational speaker whose first book Trapped: My Life with Cerebral Palsy is an Amazon bestseller.

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Mrsjayy · 19/08/2015 12:06

Wonderful post Fran lots of the things that affected you happened to me growing up and beyond its hard sometimes

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franmacilvey · 20/08/2015 19:12

Hi, Mrsjavy - thanks for reading, and for your comment. :)

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