On #WorldCerebralPalsyDay, Jennifer McShane ponders the more difficult aspects of accepting your disability.
Today is #WorldCerebralPalsyDay. It’s heartening to see so many positive words about the day on social media; to hear so many uplifting stories about battles overcome by amazing individuals. Because to have a disability is to live a life of many daily battles.
I was diagnosed with mild Cerebral Palsy (CP) just after I turned one, and I’ve always been in and out of wheelchairs, on crutches, using walkers — it’s more or less the same now at 33, though I tend to avoid all walking aids, choosing to be as independent as possible.
I shouldn’t do this; it’s not good for my posture or balance, but sometimes I just want to move around without any added baggage.
That’s how I’ve always felt about the CP; like it was baggage I had to adapt to and learn how to balance. Only the difference is, you never get to put the disability down when the weight gets too much — it’s always there, whether you like it or not. I’ve gotten pretty good at managing mine, save for more than a few hiccups every so often.
But for so many years, I didn’t even want to say the words ‘I am disabled.’ Even though I am. You couldn’t miss it, to put it mildly. For me, from a very young age, the word disabled has a negative connotation that I found very difficult to get past.
Because having a disability took me years to truly come to terms with. I’d love to say I was just happy with myself right away. But it wouldn’t be true. It’s taken three decades to get to a place of comfort – and even then, it can be difficult.
I distinctly remember I was living abroad and at some after-school fun fair event when I got stuck trying to get up some stairs. A group of girls stopped by me, looked me up and down while one said, “Shouldn’t we offer to help her? She’s clearly disabled” as if I weren’t standing right in front of her.
All I remember is hearing the words ‘she’s disabled’ and wondering who they were talking about. Even though I knew I was different, my family never used the term when describing me. So straight away I felt like I had been unfairly labelled, using a term that was negative. I was only around nine years old.
It stayed with me for years, the fear that the disability was all that people would see.
I hadn’t yet realised that to be disabled could be something wonderful; that it could instill you with a will of iron to never stop trying until you got what you wanted.
But this is because I was a late bloomer in almost every respect. I happily will now tell anyone who listens all about having the CP; I wear it like a badge of honour because I’m so proud that I’ve come so far.
But even with the knowledge that this disability has shaped who I am today for the better — I ran away from it for years.
I didn’t want that label; I didn’t want others to call me “inspirational” because of a disability, I was just a kid — and I just wanted to be me.
Most of the time I convinced myself I didn’t have CP — that I was grand, happily going about life ignoring it, as much as I could. And then I’d become startled every time I walked by a reflection in a shopping centre, forgetting that I needed to push my knees in more to stand up taller when I walked (sometimes this still happens).
I have an identical, fully-able-bodied twin sister. There was no denying I had it when we stood side-by-side (I usually sat down). Instead, I came up with what I felt was an effective coping mechanism: as long as I knew I had it, but didn’t make it a big deal, I would be fine. People would see past it. That’s primarily formed my outlook — that ability to downplay it. But I was also aware that I was lucky too, to be as privileged as I was and still am.
I was educated, able to be reasonably independent, walk unaided — even if I found many things hard. Others in a similar situation had it much harder. So I felt guilty for making a fuss when I had so many things going for me. This has made things more difficult than they need to be, and still my automatic answer to the kind offer of ‘can I help you?’ is to refuse — even if I do need help.
And then there’s the guilt I feel. I still feel guilty. For not talking about it as much as I should. For downplaying it when I know it helps others to read similar stories. But I never read about this part growing up — I never heard about the person who found coping with their disability difficult. Even today, all I read are, by in large, positive stories. I never read about the woman who cries on the floor because she can’t pull herself up and has to try to painfully will her muscles into a kneeling position to do so.
I never read the stories that tell you that acceptance will come – even if it’s later than you expect. Or the ones that say it’s okay if you choose to wish you didn’t have it.
I suppose I’m here to tell anyone reading this that is disabled and has felt as I have, that all this is okay.
It’s okay to be a late bloomer.
It’s okay to only fully come to terms with your disability.
You’re trying your best up against so many obstacles.
Read more: Accepting my disability and accepting being disabled
Read more: What Netflix’s The Politician is already getting right about disability
More like this: ‘I hope it shifts perspectives’: Netflix’s extraordinary CRIP CAMP is a must-see
Jennie McGinn lost her mother Annie in October 2020. From an unusually large, and unusually female family, she writes about losing the centre of their family orbit and how she has managed parenting a toddler and a small baby while wanting to spend time completely submerged in her grief.
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