Thursday, 9 January 2014

Living in the Grey

I know I usually do a lot of posts about what we might call the lighter side of being disabled, because I think there's a good amount of humour there and it involves a lot of things that most people don't know about disability. However the subject I'm posting about today, I have never seen covered before, in blog, tv or magazine. So it's not too far away from what I usually write about in some respects.

Life to a lot of people is black and white. The longer I've been ill the more I can see this statement as being true. Humans like putting things in boxes, black and white boxes most of them. There are those who are disabled and there are those who aren't. Unfortunately life isn't that simple. Where do I fit into all of this? I am disabled, but it's my engine that isn't working to full speed not my kinetics. My legs physically work, I can physically put one step in front of the other. You could watch me walk down a corridor or up the first few steps in a flight of stairs and think me no different from any other person. But look away for a minute and look back and you might well see me clutching my chest for breath.

In day to day life it does not bother me that people don't know I'm ill. Why should it? Everyone wants to be treated equally right? Everyone wants to be perceived as normal. But there are people in my life who are not my close friends or close family, people who don't see me everyday but know me well enough to approach me in a public space, maybe go for a coffee or chat for a bit in the street. It's these people who bother me. You can almost see the confusion in their faces when they look upon me in a wheelchair in town when I was perfectly capable of walking from the disabled parking into the lecture room the other day. I don't know why it's so hard for people to understand that I have an illness which means I have good days and bad days. One day I might feel well enough to walk from my car to the lecture, sometimes I may not have a choice if I don't have carer with me to push me (wheeling yourself around is far more exhausting than walking!) and another day I might have a carer with me, oxygen on my face and be confined to the wheelchair for the day. But in any case, it is not difficult to imagine that someone may be unable to walk around town for hours or around a supermarket with their shopping, but can walk a little way into a lecture hall or up some steps into a shop. Surely I am in the same position as a young toddler in a pushchair, I can't be expected to walk all the way around town but it shouldn't surprise everyone that I can stand up and put one foot in front of the other a few times. Unfortunately I do get funny looks when I get out of my car, apparently healthy and then get into my wheelchair and I have had abuse from people when I've parked in a disabled bay. I got fully blown shouted at by a woman in a Mcdonalds car park because I'd pulled up and forgotten to put my badge up straight away.

I understand that society labels people and that being "semi-disabled" isn't currently a label. But it does create a bit of an identity crisis for people like me. I've given in, I don't mind being seen in a wheelchair or being considered disabled. But I know people in a similar position to me who reject the label and try valiantly to keep walking everywhere, to never be seen in a wheelchair or wearing oxygen because they feel like a fraud, because they're not completely paralyzed so it's like they don't feel right considering themselves disabled. And as painful as it is to admit it, I can see exactly where they are coming from when I think of the looks I get in public places when I stand up. I think we all fight the lazy stereotype. I went through school being called lazy by my friends and even teachers for not doing p.e. or saying no to walking down to the shops, or getting a lift home from school even though for sixth form I was at a school that was practically a road from my house. There's a sense of having to prove yourself, prove that you're not lazy, that you're normal or that you're disabled, because the truth is you're not any of those.

The fact that it isn't a huge bother to me isn't the point. There are other people like me, and there are people a lot younger than me who struggle with this identity crisis and when it's reinforced by people you know and like it can be very confusing. The name of my blog is a nod to the identity crisis everyone goes through being a teenager but for me was complicated by being 'the girl with heart disease'. I've embraced it, because it's a part of me, and if you are struggling with the same, that is my advice to you. Just be who true to who you are. It's okay to be different and it's okay to want to be normal.

I don't think the whole disabled identity crisis has been covered properly before, at least I've never come across anything written about it before. I wish I'd had someone to talk to at the time. I hope children's hospitals invest in nurses who can deal with the emotional side as I think it would have helped a lot. I don't know how much of what I was feeling I understood at the time, but just someone saying it was normal would have helped me a lot. So to anyone out there who knows a teenager with some kind of sickness or disability, tell them from me that what they're feeling is completely normal and you'll come to terms with it on your own soon but talking to someone will make it easier.

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