Friday, 1 May 2015

Don't put me in a box: reclaiming my narrative

This post is part of Blogging Against Disablism Day #BADD2015 . Please click the link to read the other posts being published for BADD 2015.

Blogging Against Disablism Day, May 1st 2015

I was going to write about something else but I had a last-minute flash of inspiration for this post. It's something that has been forming as an idea for a while, but I didn't think until today about publishing it for BADD.

Some time ago, I came across this TED talk by Sue Austin, a disabled artist. I was really taken by much of what she said about narrative, and I really related to her experiences.

Society imposes narratives on people all the time. As disabled people, we are no different. We have many narratives imposed on us, many of them negative.

Last year, I went on a short break with my husband to Snowdonia. "Your life must be hell!" exclaimed the B&B owner, on learning that I was chronically ill (I wasn't able to think of a way to not tell him why I was using a wheelchair). I tried to tell him that, no, my life was not hell, thanks very much, but he wasn't really having any of it. He'd made up his mind, and it took 3 days of seeing me not living the life from hell (I was on holiday after all!) for him to unmake it. "You actually seem pretty happy" he said on the last day. Yes, yes I am, and you know that now that you actually know me, I thought.

You see, it isn't that I don't think anyone's life can be hell when they're ill. But mine isn't, and I get just a bit fed up when people assume that my life must be rubbish because I'm disabled, especially when they don't know anything else about me. My life, just like everyone else's, is a mixture of experiences; good, bad, bittersweet and everything in between.

It's not just assumptions about my life either. People make assumptions about my abilities, when they know nothing about them. Last year I attended the AGM of a local group who I'd recently become a member of. They were looking for people for the committee, and I was approached. I made the mistake, yet again, of mentioning that I'm chronically ill. The reaction was, 'I'll leave you alone then.' Noooooooooo! I thought. An opportunity to participate in my local community slipping through my fingers because of an assumption that I can't do anything because I'm ill. Fortunately, I spoke to other people and I've joined the committee anyway.

People make these assumptions because society tells us particular stories about disabled people. Disability narrative is full of pity, tragedy and fear. We are told that we are useless, worthless and a burden on society. Having supportive people in my life and being trained as a social worker to see people's strengths didn't stop me from absorbing this narrative for a while.

But no more. Slowly, I have realised that I don't have to let outside forces tell my story. I shouldn't let them, because that story isn't true, especially now. Yes, I was unhappy when I was first ill. It was a loss, I grieved. But when I came out the other side of that grief, I realised that the rest of the world hadn't travelled with me. I was dismayed, outraged at times, to discover that other people saw me so differently to how I saw myself. It was a source of frustration for a while, until I realised that actually, I didn't have to listen to that story that was being told about me. I could tell my own story. I've been telling it to myself for a while, and it has really empowered me, and helped me to take back my confidence and self worth. Today I'm sharing that story with you.

My name is Melanie. I am a wife, sister, daughter, friend. I write. I create. I cook. I have challenges. I have fun. I have suffered losses. I experience many emotions, but mainly I am happy. I am living with a chronic illness. I adore being outside in the sunshine. I make mistakes. I love eating good food. I am disabled. I enjoy good conversation. I am doing my best.

Look at me.

Photo credit: Lydia Brockless. Photo description: the picture shows woodland with bare trees, blue sky and sunshine. I am sitting in my wheelchair in front of a tree, with my arms flung back and my face towards the sky.

I am thriving.