Thursday, 11 December 2014

'The Stella Paradigm' & How I Lost My Tribe

Four years ago this month I wrote the first published article on the ABC's online disability portal Ramp Up. Writing that article was, at the time, a thrilling experience. I always wanted to be a contributor to my national broadcaster. I was so green though, and it showed. I thought the views I expressed in that article were indicative of the views of people with disabilities around the country. Turns out they were not. I was the radical within my own fringe group.

In the following months, this sense of displacement grow wider, as the views on my own disability radicalised. It was pure happenstance that I learnt to loathe my cripness at the same time that my views on disability became more widely known. I never set out to ruffle feathers, and contrary to the opinion of some, I don't take pleasure in telling the world that I hate my most widely known characteristic.

I can never understand the mainstream orthodoxy of disability in this country. Since being published by Ramp Up, at the instigation of Stella Young, I have really tried to understand the views of the disability community that differed from my own, particularly those of Stella's, who to my mind was always the personification of this orthodoxy. I read every article of hers, more than once. Each time I could feel myself wondering:

How the hell did she get there?

For someone so beloved by so many people I know and respect, I was often so utterly confused by Stella. It wasn't that we disagreed, and that we were polar opposites ideologically, but that our views were so personal, and went to the core of our respective beings. Every time she would write, and appear on TV, she would proclaim that being disabled was not only a thing that she loved, but that it was the best part of her.

Since news of her death emerged, the response of the media and the community has genuinely astounded me by its sheer number. It is great that she has been recognised, because she was a game changer for disability advocacy. I don't begrudge the enormity of the coverage, even though the occasional piece veers into the self indulgent wankery of 'I knew Stella better than you did.'

I did not know Stella at all, but the response to her death leaves me more confused than any of her pieces ever did. When the only coverage of disability in the media (and thereby the only argument projected to the general public) is centred around individuals who accept 'The Stella Paradigm' of disability pride: where all crips are assumed to be for the social model of disability, NDIS advocating, 'inspiration porn' crusading, crip champions for the masses.

What happens when you disagree with every single aspect of 'The Stella Paradigm'?

Over the past three days I've read all of Stella's editorials for the ABC again, trying to figure out why there was such divergence between us.

Am I just plain wrong?

Am I being too harsh on my own disability? Should I learn to love it? How come I cannot?

How come when I think of my disability, it brings me nothing but pain, regret and longing?

How could similar thoughts bring Stella, and many others, so much joy?

It is these questions that give me pause and so much confusion.

Just a few hours ago I read an article that advocated for the return of Ramp Up. Looking at the big picture, I always think it is fantastic idea to give people with disabilities the opportunity to share their opinions and values. However, if Ramp Up was to replicate its former model. I don't want to be part of it. I met some great people through my connection with the site, but that model represents 'The Stella Paradigm' in all its glory. Pride proclaiming, chest beating, flag waving cripdom. 

This week has been such a struggle. Revisiting my own crip ideology, I have concluded that the biggest thing that defines my disability is my own self loathing.  I have never wanted to do what Stella did on behalf of all disabled Australians. I would hate to be the walkie's authority on all things disability. It is why I admired Stella. She did things I could never do. She spoke for the nation. She loved her tribe. She loved herself.

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