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Sunday

Disability ?

I don’t want to talk about disability generally. I can only speak to my own experience. I was recently introduced to the notion of the Social Model of Disability, the idea that it is the difficulty of functioning in society that determines if one is disabled, rather than the specific physical, emotional or developmental issue that a person might be experiencing. 

I have been diagnosed with Asperger’s syndrome, I am on the autism spectrum. This is a disability within the Social (and Medical) Model because being autistic prevents me from easily making a living and building friendships and professional networks within the current structure of the society I live in. It interferes with my ability to deal with people and it means that I have various sensory issues that can make daily life stressful or uncomfortable.

Living in a society with a welfare system and free healthcare you might think that I receive extra support for my disability. This is not the case.
Because of my Asperger's, I struggle to work with people on a daily basis. I cannot find a job that allows me to work on my own, so I have to work part-time in order to manage the stress of being around other people. However, I am not entitled to any benefits or financial support because I do not have a physical disability.

As an artist I could (and have) identify as a disabled artist and I have received some mentoring from and been exhibited with two disability arts groups. However, because artist organisations, even ones for people with disabilities, are not set up to support people with my kind of neurological make-up, the real support that I need and that would make a genuine difference to my professional life does not exist. Or if it does, I don’t know where. 
I’m mostly interested in making work about the world and being human, rather than focusing on making work about my disability, but it seems that disability arts organisations want artists who are political about disability (understandably) So I struggle to find suitable projects supported by these organisations that would exhibit the sort of work I love to make. 

I use social media to connect with other disabled/autistic/neuro-diverse people and artists and get some emotional and political support that way. It has helped me tremendously to understand my condition and to connect with other people in a way that is manageable. But it is also fraught with triggers: noticing people who do seem to get help and support for their autism, or who seem to be part of an offline autistic community, even winning a kind of celebrity for having the same condition that makes my life sometimes very difficult and frustrating. 

However, underlying all the feelings of frustration, unfairness and hopelessness there is another voice that questions if I am disabled at all, even though the difficulties I have just functioning day to day are quite frankly a bloody pain in the arse.

However.

However, I am competent. I’m actually more competent that many other people I know. Yes I’m beyond crap at remembering to smile at folk and I often get accused of being rude if my social functioning has been skewed by sensory overload, but I can talk to folk. I can give lectures. I can make small talk. I know some pretty good socialising rules and tricks. I remember to ask about them. I know to talk to everyone in the room. I can fix a smile and say the ‘right things.' I know what knife and fork to use and how to disport myself in polite company.

And I know how to do many things. I can milk a goat, knit a jumper, build a fire, bake bread, make wine, grow food, grow flowers. I know about British wildlife and mythology. I can create and run a pagan ritual. I can use a drill, a saw and hammer in nails. I can use a screwdriver and build a box and I know how to make ink from oak galls. I can build a pond and lay a crooked hedge. I can bake cakes, I’ve given birth, I can spin on a drop spindle and know many wild plants names and medicinal uses. I can swim, I can sing, I have a teaching qualification and a first class degree.

This person, this competent person, this person who loves to help other people, who raised a child, who has taught children and adults skills and knowledge, who reads and understands, who loves to think and is in love with the world, with the science and wonder of it all, this person is not. fucking. disabled.

I am thankful that I got a diagnosis of Asperger's/autism. It's helped me to understand myself better and because of my diagnosis I've made some changes that mean life is so much more comfortable than it was before. And there are some seriously wonderful autistic people out there, my tribe!

However, identifying as disabled has been of no help to me at all. It’s just made me feel helpless, incompetent and depressed. I have been thinking that all this agony, all this internal anger and despair has really been a very good thing for me because I have come to this realisation that I am competent and that I am here on this Earth to help, not to be helped. I am thankful that I am me and even though it would be lovely to get some support, it’s not for me. There are plenty of other people who need it more than I do. There are plenty of other people that I could actually help.

So I’ve decided that one way I can help is by doing it my way. By making the art I want to make and figuring out how to get the money to support my practice without trying to jump through the conventional hoops. Why can’t I give away my work? Why can’t I put on my own exhibitions? I’ve done both before. Not only that but why not live differently too? If I can only work part-time then why not embrace poverty? Why not figure out how to live happily on very little? (I think I pretty much have that sussed anyway)

If I live my own life, do things in my own way I can offer that as a gift to others. My footsteps can help to flatten that path of individuality just a little bit, which will hopefully make it an easier one for others to walk.

It won’t look like a ‘normal’ life. Perhaps I will never ‘make it’ as an artist. Perhaps it will be uncomfortable and difficult and weird. But it will be mine, my way of being and my way of making work and that doesn’t make me feel disabled or helpless or ashamed. It makes me feel strong.

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