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Death of a disability dynamo

  • 08 December 2014

Death loses its abstraction when a person like Stella Young dies. It becomes material. It makes itself manifest in the silence, which it somehow solidifies: the unwritten word, the unspoken retort, the unmade joke.

It is difficult even now to think of a world without Stella. I do not know her, but knew of her. She captured our attention in 2010 as the founding editor of the ABC blog Ramp Up, where she showed exceptional lucidity and passion as a disability advocate.

I met her once when she took time out of her Saturday to coach first-time panelists for a writers festival. She is as everyone says she is. Was. Is there a more awful word?

Stella was sharp, funny and warm, whether in person or elsewhere. She was fearless. She wrote a letter to her 80-year old self, published only last month, which is ferocious in its clarity. She outlines what she expects her life to have been by that age, full of love and loss, and marked by inner triumphs. There are no references to regret.

'Perhaps that thing I always say flippantly, usually with a third glass of wine in my hand — that I'm here for a good time not a long time — perhaps that's true,' she writes.

'But on my path to reach you, I promise to grab every opportunity with both hands, to say yes as often as I can, to take risks, to scare myself stupid, and to have a shitload of fun.'

It is worth wondering what Stella would think of the reaction to her death, knowing how much she bristled at being described as courageous and inspirational. 'Disability doesn't make you exceptional,' she told a TED audience in Sydney last April. 'But questioning what you think you know about it does.'

She flipped what we thought we knew about many things. She preferred to be called a disabled person rather than a person with disability, not just because her being a person should be assumed anyway, but because it correctly puts the onus not on her physical limitations, but on how the conditions around her — from stairs to policies — failed to account for people like her. She made disability visible and vocal, and made us wear the shame because it fit us — not her.

She wrote about abortion from the nuanced perspective of a pro-choice feminist with a genetic condition that can be screened. She