With today being UN International Day of Disabled People, Jennifer McShane ponders the more difficult aspects of accepting your disability.
Today is UN International Day of Disabled People. It's heartening to see so many positive words about the day on social media; 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. And I've overcome many of my own, yet I've never been one to shout about my disability, even on days like today. I had always thought I fully accepted mine from the very beginning, yet when journalist Louise Bruton wrote a fantastic column on the acceptance of her disability just recently, it reminded me I hadn't always felt the same way.
Related: Accepting my disability and accepting being disabled
Diagnosed with mild Cerebral Palsy (CP) just after I turned one, I've always been in and out of wheelchairs, on crutches, using walkers - it's more-or-less the same now at 31, 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 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. I'm 31 and a woman and a writer and disabled. I'm immensely proud of that now, to be a part of that community. But it wasn't always so. For me, from a very young age, the word disabled has a negative connotation that I found it very difficult to get past.
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. I don't ever remember hearing it in such an obvious way prior to that, even though I knew I was different - but my family never used the term when describing me. Straight away I felt like I had been unfairly labelled using a term that was negative. I was only around nine years old.
I still feel guilty for not proudly standing up and saying I am disabled much earlier
It stayed with me for years; the fear that disabled was all I'd ever be known as. I hadn't yet realised that to be disabled could be something wonderful; that it could instil 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 to be a disabled woman. But even with this pride that has seen me able to pretty much do anything, 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. A girl who wore terrible glasses (the photos will never see the light of day), adored her Mini Mouse pyjamas, loved movies and playing with her twin. Most of the time I convinced myself I didn't have Cerebral Palsy - 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, it was, I felt, an effective coping mechanism — something to make the problematic days more manageable. 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 because I knew even then to check my privilege. I was educated, able to be reasonably independent, walk unaided - even if I found many things hard. Others in a similar situation to me I knew 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; 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 proudly standing up and saying I am disabled much earlier. But I never read about this growing up - I never heard about the person who found coping with their disability difficult. Even today, all I read are positive stories by-in-large. I never read about the 31-year-old 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 not to be so happy about it all the time.
I suppose I'm here to tell anyone reading 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 30 years on.
As my mother always said, just be yourself and try your best and you'll get there in the end.
And you will. And that's the most important thing.