Death of a disability dynamo

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Stella YoungDeath 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 pointed out the limits of a deficit view of disability, especially in debates around voluntary assisted death or euthanasia, where medical assertions of 'quality of life' don't necessarily cohere with how a disabled person views their dignity.

Stella did not make it easy for us to be passive, unthinking or dispassionate. She asserted her presence in our lives in this way, even if we had never met her.

When people who shine fiercely leave us, we realise suddenly the darkness that had been held at bay.


 

Fatima MeashamFatima Measham is a Melbourne-based social commentator who contributes regularly to Eureka Street. She tweets as @foomeister and blogs at This is Complicated.

Topic tags: Fatima Measham, Stella Young, disability, euthanasia, abortion

 

 

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Existing comments

I won't make comparisons, and I realise that news editors have to make choices, but why was her death not the first item in the the news last evening?Thanks Fatima for telling us about a great human being.
Frank | 09 December 2014


Fatima, your final statement is a beautiful.appreciation of Stella who made herself known to us. Thank you.
alex | 09 December 2014


What a gift it is to be able to make people laugh. Stella Young had that ability. So much so that after a sentence or two you hardly notice that she was a disabled person, 'a crip' as she daringly called herself. Her parents named her well, Stella (a star), for she shone like a star wherever she went. Even before she spoke her smile, her whole face, radiated fun. So the careers she chose, comedian and disability advocate, have proved to be too much for her courageous heart. Stella forever young. Rest In Peace.
Uncle Pat | 09 December 2014


Thanks Fatima for a great article about a wonderful woman who challenged so many of our shallow ideas about disabled people and made us smile with her.
Maureen O'Brien | 09 December 2014


Thanks, Fatima. Nor did I know Stella and yet, having seen her and heard her twice, I feel I did know this wonderful, most positive woman who allowed us to become acquainted with so much of her fascinating, positive self.
Caroline Storm | 10 December 2014


We mourn the death of Stella Young of colourful shoes and intelligence and wit to build a web of people around her. We are joyful that she has been with us and inspired others who we sincerely hope take up her faith and glorious personality.
Mary | 13 December 2014


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