I’ve been thinking a lot recently, so much more than usual, I know, who even knew that was possible?
And in all this thinking I have come to realise how much all my thoughts have changed from those early years of my accident, to now.
You see I’ve been feeling a little like a failure in just about everything at the moment, and that people are just getting a little exasperated with me. I feel like everyone around me got used to a Chloe that was naive to her new world, enthusiastic about finding her way, and in the thought it’d all be easy.
They have heard me say over and over that I want to achieve all these different things, continue with all the goals I’ve always had, and that I won’t let my disability stop me.
Yet here I am, no further on really, the only thing I’ve really done is get my degree. Which is huge yes, I acknowledge that, and I’m immensely proud, but three years on from that I feel people expect more.
I guess it comes from an accumulation of so many different things.
There’s that societal pressure of you must have this, this and this by the time you get to whatever age in order to live a fulfilling happy life. Mixed with everyone around me reaching those goals and feeling further and further behind.
Then there’s the fact I’ve lived with disability for 10 years now, and I now know how fucking hard it is.
I honestly thought it would be so easy.
In hospital you’re in an environment that’s pretty accessible, and everyone is in the same situation. I accepted straight away what had happened, I knew it wasn’t going to change so I just wanted to get on with life.
Then i become a part of the real world again.
I couldn’t just get on with my day because the care wasn’t there to help me get out of bed. I went from being able to make friends so easily to everyone being terrified to talk to me. To having conversations where I was included on the next trip, to not even being included in the conversation. From feeling like the world was my oyster, to not even feeling like I had a place in my own community.
That initial shock really shook me and it took a long time to get to a place where I thought I was strong again. I got on that path again of feeling like I could tackle my way through life, and I felt confident about where I was heading.
Then college let me down, kicked me out because I’d been off to many times while dealing with MRSA, even though all my work had been in on time.
I fought my way back.
Then had the adaption to the house rejected because “it would spoil the view” and “I had a cellar I could live in.”
Again I’d push through and fight.
Care would fall through, again and again and again…
With everyone of these push backs the fight gets a little bit harder, and you’ve fallen further behind everyone around you, and further from being able to achieve all those things you were supposed to have achieved by now.
You don’t only have to find your way back to your starting point, but you have to build yourself back up to being able to move forward.
People don’t see these battles, and I know it’s in part because I don’t always express how hard the fight is.
People don’t see that being disabled means you are always going to be at the very least one step behind, because we live in a world where you are an afterthought. A world where you are seen as a drain on the system, surrounded by people like Piers Morgans that think disabled people would be fine if they just stopped feeling sorry for themselves and get on with it.
The point is we do, every god damn day!
We have to get on with having no or incorrect equipment which is necessary to exist let alone live, because it’s deemed to expensive. We have to get on with people parking in disabled parking spaces when they’re just popping into the shop. Get on with disabled bathrooms or the entrance to them being used as a store room. Get on with inadequate care, resources, job opportunities, wheelchair fucking access.
How am I supposed to keep up with everyone else, when I can’t even get access to a correct sling to get out of bed.
How can I not feel like a failure when in almost every way I’m set up to fail, and how can people not see me as a failure when they just see the expectations.
Love, C x