Wednesday, 15 March 2017

My Disability Defines Me & That's Okay

'Don't let your disability define you.'

I can't tell you how often I hear this, whether it's said directly to me or it's just a general comment made on Twitter. Disabled people are forever being told not to let our disabilities define us or take over our lives, ever since my health got worse I've constantly had this message thrown at me. You know what though? My disability does define me. It has an impact on every part of my life and I embrace it as much as I can, it really does define me and that's okay.


I'm sick of people, especially able bodied people, telling me that my disability shouldn't define me, that I'm so much more than that. And yes, I am so much more than it but it's the biggest part of my life and it would be difficult for it not to be. I have hospital appointments every week, I take a large amount of medication daily and I'm constantly in pain which means that my disability defines every part of my life. It gets to decide whether I can get out of bed and whether I can leave the house, just to name a few examples.

I'm not ashamed of the fact that my disability defines me because it's helped me to achieve so many things. I've talked about the issues myself and others face on my blog, I've written for other websites and publications about it, I've gained charity work from it etc. That doesn't sound bad to me! I've never seen my disability defining me as a bad thing and I'm sick of people giving out this message that it is bad.

My life revolves around my disability and not always in a bad way either. Of course it means I go to a lot of hospital appointments which means I sometimes miss out on things but it's not all bad. I've worked with charities like The British Heart Foundation and The Hypermobility Syndromes Association, educated a lot of people on disability issues and ableism and raised awareness of my own condition, Marfan Syndrome. My disability defining me has helped me to do these things, it's my unique selling point if you like.

So, if you're disabled and it defines you, your personality and your life: don't feel bad. Embrace it and ignore anyone who tells you that you shouldn't be defined by it, it's your life and your disability. Make your own rules.
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6 comments

  1. This is a great post; thankyou for sharing it :) I've heard this phrase and really similar ones so many times, online and in person by family members and fellow students back when I was at university, and it gets so tiring. My fibromyalgia and my mental illnesses do define me, they affect every aspect of my life and it's annoying that people constantly tell me it is a negative thing >.< I cannot change that my conditions impact every part of my life, and I'm trying my hardest to still do the things I love despite them and I'm always being brought down by ableist comments like this. My conditons do define me and I'm okay with that! x

    Sarah | Raiin Monkey

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    1. Everyone automatically assumes that disability is a bad thing, leading them to decide that none of us should be defined by our disabilities when it in fact so much good has happened in my life because of my disability. I wouldn't have met my partner, most my friends, I wouldn't be writing something for a book! I could go on! x

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  2. Interesting post. I've thought about this a lot over the past couple of years. A very good friend of mine became disabled by chronic illness a couple of years after she moved away, and in one of her letters she said about not letting her illness define her. Since I have now also become disabled by chronic illness, I waver between defining myself by it, and rebelling against it in my mind!

    I think nowadays I've settled on 'my disability doesn't define ME but it defines MY LIFE': true, I have changed in many ways since becoming disabled, but I still love all of the things I used to, and the things I can no longer do, I would still love doing if I could. My basic personality is pretty much the same, just hopefully a little improved, as is my love for life.

    [I recently told an acquaintance whom I hadn't seen in over a year, if I could be instantly better, I would jump at the chance - but I wouldn't change having been disabled.]

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    1. It's a really personal choice to make and there is of course no right and wrong situation, it's the pushy people who force their idea that I shouldn't be defined by my disability that annoy me, these are people who are usually abled.

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  3. Ah yes, I totally agree - those pushy ones are usually also the ones who are adamant that 'there's no such word as can't' / 'we all get tired at times' (argh!) / 'if you just tried x/y/z you'd feel a lot better' (funnily enough, no!)

    I sometimes wonder if they're actually just trying to remind themselves not to define us as just a disability (see also: proudly announcing 'I see the person, not the disability'. Blargh! Actually that's just as offensive, refusing to acknowledge that part of our existence. *Sigh* oh, ableism!)

    Sorry, that slightly ran away with me there. In short, I agree! XD

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    1. Argh god I hate the people that say 'I see the person, not the disability' statements like that imply that we aren't people in the first place.

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