Life with cerebral palsy: a little reflection
I never thought I would write anything like this piece. The internet is a harsh place, not somewhere you’d choose to write about the hardest aspects of your life. But after reading this piece by a fellow blogger, and after an illuminating first year at university, I decided that maybe the truth shouldn’t be so scary. I have come to accept a lot this year, and I want to share that with you. Here’s (just a little bit of) my story.
I have cerebral palsy. I have long accepted the harsh truth of this fact: I have brain damage, I will never walk. I need help to get dressed, eat, shower, go to the loo and anything else physical. Fine. I’ve never known any different and, honestly, I don’t care. It always amazes people when I tell them this; but it’s only half the truth. There are also social aspects of disability, and because these are harder to talk about, I often just don’t.
As a child, I was blissfully unaware of much of what was coming my way, but since struggling to make friends at secondary school I’ve been keenly aware of society’s attitudes towards disability. At 14, no one wants to be different. No one wants to be friends with someone they see as different. That’s just the way it goes. I went to a mainstream school and was the only person with a visible disability. I was very different and it was pretty lonely.
Loneliness and boredom characterised my teenage years. Even with the friends I did have (who were some honestly amazing people) it was hard to socialise outside school because of the pervasive lack of access and my reliance on a carer or, most of the time, my parents. No one wants to take their dad to meet their friends at Starbucks, and anyway, he understandably had better things to do.
I worked hard and I did well. I found joy in writing. But it was hard, and the more I fell behind socially – as house parties and romantic relationships became the norm for many of my peers – the harder it got. There were times that were very bleak and when I thought it would never get better. My self-confidence disappeared and I lived in constant fear of the future, thoroughly convinced my cerebral palsy would stop me from achieving my strived-for goals.
Looking at the last couple of paragraphs I see a one-dimensional account of my experience of cerebral palsy, which, it is important to remember, has never dominated my life. I have always been more interested in other things. And there have always been positives to my disability, not least the wonderful people who accepted and loved me, even on the days when I couldn’t appreciate it. Some of them, I simply wouldn’t know if I had been able to accurately place one foot in front of the other, and such an ability wouldn’t be worth their absence from my life. They all know, I hope, who they are, and I love them beyond all the words in the world.
They are still here now (give or take) but rather than softening the blows of life, they are sweetening the successes. For, despite what I thought, things did get better. I have just completed my first year at university and, for the first time in a long time, I am happy. A year in, the transformation of my life still takes my breath away. The freedom afforded to me by full time care is indescribably glorious, as is that which comes from leaving behind what held me back for so long. People of 18 and 19 are amazingly open-minded, and I have met incredible friends who do not care that I cannot do very average things for myself. I have written about the joys of university already, but I am writing this as a thank you to these new people.
They will probably never understand how, but by accepting me they have allowed me to accept myself. For so many years I pretended to the world that my disability didn’t matter. This, I thought, would allow people to see past it and just make it go away. In reality, it became the elephant in the room. Now I will freely discuss cerebral palsy – I am writing this, ridiculously – and the elephant has shrunk to the occasional awkward moment when someone simply forgets that I am disabled.
I think I know that things will never be easy, and the future is still scary. The job market for every graduate is difficult – add in an electric wheelchair, speech impediment and whatnot and things get trickier still. I feel left behind when it comes to relationships, and the stats for disability and relationships aren’t good. It is hard, sometimes, to smile and nod at my friends’ escapades in this particular area. But then I remember that if they’re talking to me about it, they don’t see me as being beyond such things myself and I breathe a little easier. And if there’s one thing I’ve learnt in the past 19 years, it’s that a surprising number of people see me for who I really am and not for my cerebral palsy. All I need is for one of those people to be the right guy, and it’ll be ok – right? And with all the success my writing has had this past year, I am quietly hopeful for a job, too.
So no, being disabled isn’t as ‘fine’ as I make it out to be. But it isn’t half as bad as I once convinced myself it was. There is a middle ground which I am beginning, perhaps belatedly, to settle in to. And maybe in finally writing this, I have accepted cerebral palsy as part of who I am. This is my story and my truth, and I wouldn’t change it. Not now, not ever.