Monday 7 May 2018
Spoonie Writer - Being An Inspiration(!)
BEING AN INSPIRATION(!)
This is something I've been wanting to write for a while. It's something that a lot of spoonies (and disabled people in general) will have probably heard of, come across or being the centre of. And that's the idea that just because I'm disabled, I'm an "inspiration" to everyone. You've probably heard the saying: The only disability is a bad attitude. It's crap. A friend of mine did this wonderful gif that basically explains why it's crap. I'll add it below.
I know what you're thinking: what's the big deal? Why does it matter if people are inspired by you? You're badass and write and publish and all that jazz? What's the issue here? Glad you asked, because I'm gonna tell you! And if you didn't ask, feel free to keep scrolling, but if you stick around, you might learn something new and that's never a bad thing, right?
The issue isn't being inspirational because I wrote a book or two and am badass and all that. It's the fact that people who aren't disabled generally look at those who are as a source of inspiration in a way that's harming and pretty damn insulting. You'll have seen the headlines I'm sure, someone asked a disabled person out on a date, aren't they just amazing? Or the ones where you read about someone who did something "despite" their disability. The something can be as big as competing in the paralympics, or as small as getting through exams. The issue there is that, whether meaning to or not, the article is saying to everyone else out there: "What's your excuse? This pathetic being managed it, so should you!" And that's harmful af.
I am chronically ill. I am disabled. I wear oxygen most of the time and I use a wheelchair most of the time. I'm also an indie author with nearly 12 books out and over twenty written. The two have nothing to do with the other. That I'm disabled does not make me some inspiration. I'm not someone to be fawned over because I got out of bed "despite" my disability. I'm not someone to take pity of, or to use as you give yourself a pep talk. "OH Joey managed it and she's disabled which means if I don't, I'm less than her, and no one wants to be less than a disabled person!" You get what I'm saying here?
By all means, be inspired that I've written as much as I have, or that I've done things outside of the realms of the average human. But don't paint me as something to be admired because I happened to be in a wheelchair while I did it. Pity is a powerful thing, as is ableism. I know, I know, I used the a word and there are probably a thousand eye rolls right now. But it's an actual thing. I've dealt with it ever since I become a wheelchair user, even before that when the majority of my conditions were invisible.
There is a lot to be said for people who simply think that because I'm disabled I'm therefore less than. I'm not, and I know the majority of people don't see it that way. However, there are the few who do. They feel like the worst thing in the world is to be disabled. And it's not, quite simply, it's not. I have a full life. Yes, I have limitations in place because of the world not catering to my unique needs, but I'm still having a life. I'm still a person and I'm still someone who makes achievements. And yes, some of those are inspiring, but my very existence isn't.
Now, I know that some people will read this and think: Does she mean me? And the answer is, if I'm still speaking to you, probably not. I generally don't have much time for people who view me as a tool to beat themselves up with. Like just because I have the conditions I do and the effects it has on my life, they need to aspire to be better than I am because I'm disabled and therefore less than the average human. See what I mean about it being harmful? I write because it's part of me. I need to tell these stories and I need to tell them the way only I can. I post videos and blog posts as part of building my fan base and my platform and I do that because it's how I manage.
If you wanna be inspired about the number of things I get done in a month, great, but don't add on the caveat that I do it "despite my disabilities". I don't see myself as wheelchair bound. Without my wheelchair, I would be bound. I would be stuck in bed, inside and unable to do the majority of what I love. I wouldn't be able to go to signings or anything like that. I would be in a prison of my body's creation. My wheelchair is freeing. It allows me to do all the things I love and do them better and more often than I could otherwise. The oxygen also lets me do that. Otherwise I'd be stuck in bed. Same as my pump and everything else. All my treatments are there to help me live a full and happy life. They don't bind me, they allow me to be.
So, in short, I'm not an inspiration for simply existing, but I can be for being a badass writer. That's my thought for the day.
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