03 December 2013

Disability has meant finding my tribe.


While disability comes in different forms, I have found there's a collective sense of empathy in the disability community. Putting my condition in a box - ticking that box 'yes I have a disability' - has been more empowering than I imagined it could be.

I never identified with any words to describe my appearance when I was younger. The nicknames I was called hurt, and I wasn't disabled enough to go to a special school so I never had an affinity with the word disability. In the era and town I grew up, the definition of disability was either so severe you went to a special school, or you weren't disabled at all. I too had limited perceptions of disability.

When I first started mentoring young people with chronic illnesses, I was only a year older than the oldest members of the program. They talked about their experiences of having a chronic illness - things like constant hospital stays and appointments, time off school and a lack of understanding from their peers. I realised that these were my experiences too. We were different, we didn't have to talk about our conditions, but we just understood each other. It didn't matter that our conditions varied, we could learn from and support each others experiences. It was then, in 2008 I realised that I have a chronic illness. I always knew I did, but that was the first time I felt like I belonged in a group.

And then, when I was on No Limits, I'd listen to the stories from people with all types of disabilities. I'd nod and laugh, and sometimes tear up, because I just knew. I don't know what it's like to be in a wheelchair, but I do know what it's like to be asked intrusive questions.

Every time I mentored, or spoke on that TV panel, I had an epiphany and felt the greatest sense of empathy ever.

I'd found my tribe.

I went to Quippings on Saturday - it's a disability performance night. The theme was 'Piss On Pity'. I read out my piece on normal. Lots of people came up to me to tell me they enjoyed and/or identified with my words. The audience featured various disabilities and expressions of sexuality - everyone raging against the normal stereotype. It was brilliant. Kate Hood spoke of the patronising conversations she has with people who pry into why she's in a wheelchair. She mentioned how someone chased her down the street to give her a piece of paper featuring the number of a faith healer in Indonesia on it. It's happened to me too. Another performer, 'And Deathray', who has a variety of invisible disabilities, ranted that its so hard when she just doesn't fit neatly inside the box of disability. She's more than a wheelchair accessible sign. Why is she so sore today when she looked well yesterday. Again, I haven't experienced Fibromyalgia, but I've experienced the reactions she's received - the assumptions, advice and especially the sheer lack of understanding.

A person with Ichthyosis asked why I Identify with having a disability. She seemed surprised - she told me she doesn't believe she has a disability. Maybe she was surprised at me because of the negative connotations that the word disability has, or the assumption that disability is a limitation on mobility only? I told her that while I can do so many things, the disability surrounding my condition is external to me. It's the curiosity, attitudes, reservation and hesitation towards my skin, and occasional harassment - all from other people. These experiences are what my friends with disabilities face too. We are all different but so much of us is the same through our collective empathy.

Disability is a little bit about what I can't do, a little about the discrimination and attitudes I face and yet so much about what I can do. I don't want to diminish the harsh and often sad reality of disability. But I - and so many of my friends with disabilities - see the word and the condition in a positive light.

Since I've identified with having a chronic illness and a disability, my life has become enriched. I've met great people and done so many things that I may have missed out on if I'd dwelled on the negative connotations and assumptions around disability.

For me, disability is pride. it's individualism and not giving a fuck about non conformity. Disability is showing them - the underestimators. It's a sense of community. It's friendship and a strong sense of empathy with a big dose of laughing at the ignorance of others' reactions. Disability is a place to belong. It's finding my tribe.

Today is International Day of People with Disability. I've done a couple of interviews - one for 3CR radio and another for ABC Online. You can see what events are happening near you on the IDPwD website.


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