Let’s Talk Disability – Using the Word

I’m really excited as I write this relatively short paragraph; my job as Blogging Llama in Chief is, by my own standards, very easy today. Why is that, you may ask…
I follow many different people, organisations and groups on Twitter, and one person whose tweets always stand out for me is Charli (definitely worth a follow). after reaching out to her on Twitter, she really kindly agreed to write a post for my blog, on a topic which means a lot to the both of us: disability. I’m so grateful to her for writing what is a brilliant, heartfelt and genuinely interesting and informative post from a primarily-silenced perspective; thank you Charli! I won’t waffle on too much longer, but in short, I hope you enjoy this wonderful post she’s written, and do make sure you give her a follow on twitter — you won’t regret it!

Disability perception is two-pronged. There’s the perception I have of myself, and the perception everyone else has of me (and other disabled people, of course). Both are hard; both cause tears and anger and just those general little feelings of annoyance.
For me, both of these types of perception have experienced a lot of change within the last little while. In terms of myself, I was finally diagnosed a few months ago so the feeling of being fake or dramatic has finally drifted away – although not as much as I’d like it to. Personally, I’m not against self-diagnosis but I struggled to accept that I could still look at websites and help for the condition when I wasn’t “officially” labelled. I think I’m accepting that as a Charli quirk that comes with my issues with self esteem.
Almost simultaneously, I began using a cane in May of this year, and that’s something really interesting when it comes to disability perception. I’ve experienced a lot of varying reactions – shock of the extended family and people asking me the typical “what happened?” (the sarcastic stock response being “I was born”). It’s hard, because I think it’s not really a bad thing – I’ve been walking further and better, but it’s seen as you getting worse, you giving in… As if there’s no hope once you turn to walking aids, especially with invisible illnesses.
My friends and I have taken to counting the stares I get, sometimes the dirty looks (interestingly, from other cane users). On one occasion, a woman was glaring at me and then my leg buckled so it suddenly changed to sympathy. I don’t know about the rest of the world, but the UK’s perception of young disabled people especially is bad – I suppose I should be healthy and running about, and if I do need a cane, I should be unhappy or not out with my friends.
Originally, I was more afraid of using my cane in school than in public. That probably wasn’t quite right – apart from a few over-inquisitive year 8s, nothing has really been said. And maybe, in public, I’m imagining things. I think using a cane will always make me feel self-conscious, and the few little incidents will make me such – the teenage boy who mimicked my legs buckling was one that I think back to quite often.
But… I like to think I’ve learnt to work with it now. I can walk through a crowd without really thinking about it, I can walk past other teenagers and not care whether they might be saying something as I go.
Invisible illness combined with visible aids will forever be a combination that some people just don’t quite understand. I might look fine to you, but trust me when I tell you that my body is under such intense pressure to stay upright each day… I am in pain, from my back to my little toes. My heart is beating too fast and I feel faint, and getting through the school day or the shopping trip will knock me out for hours, sometimes days.
So, that’s scraping the surface of disability perception of being disabled itself. But what about the word? The disabled and spoonie communities are forever having arguments with the able-bodied and non-disabled who think it’s better to say “person with a disability”, or a variety of other words that barely anyone wants to be used.
A lot of people, including so-called activists, will say or do what they think is right without listening, and that’s the problem, really.
And so, in conclusion, I’m not sure if you learn anything from this piece or if it’s just a lot of rambling – but I hope it’s interesting! I’d like to thank L for having me and I hope you’re all having a nice day!

Don’t forget to check out Charli on Twitter, and to give her a follow too!

6 thoughts on “Let’s Talk Disability – Using the Word

  1. My kids watched this Psalty: Kids Praise 5 (or 4) I think and there’s a part where the firefly was not functioning well. The kids said he was disabled, the firefly said “No. I am more than able.”
    Reminds me of the differences we have. You are able to do many things. 🙂 You can even do greater things than those who are not physically challenged. 🙂

    Liked by 1 person

  2. I know what it’s like to have an invisible disability; I don’t even have a cane or walk different or anything, so people don’t even think “what’s wrong with her?” and it can be silly, but I kinda want people to know without saying anything, so they can be nicer, I guess. I want them to know my struggles so they can begin to understand what my life is like. It’s having my mum lay out clothes for me when I’m eighteen, having her buy stuff for me when I’m, again, eighteen, it’s not having close friends because I can’t say what I want to say, it’s never getting on a bus by myself, it’s all of that and much more. But because it’s invisible, no one will ever know. They will just stare at me when I act a bit strange, or laugh at me, but they will never understand because you don’t understand until you’re going through it. Everyone with a disability, invisible or not, has a different experience with it and it’s hard to explain to others what you’re going through. This is a really nice post, thank you.

    Liked by 1 person

  3. Aw yay Charli!!
    Loved this, and reading about your experience. I relate to this but backwards if that makes sense. I don’t have a disability but I suffer from chronic pain. It’s invisible to other people, so nobody ever thinks ‘what’s wrong with her?’
    But sometimes i wish people knew. So i wouldn’t have to explain myself again and again why I can’t do something, to ignore the looks I get when I refuse to run, to jump. And when I have to take medication, I have to hide, sneak around.
    But that’s when I get to the issue of when I do explain it to people – they just don’t understand the struggle and that really can break me down.
    Thank you L for letting Charli write this post on your blog – absolutely loved it and this has inspired me to write something of my own…

    Liked by 1 person

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