‘But in case I get hit by a bus tomorrow, I want to make something clear. I am not a snowflake. I am not a sweet, infantilising symbol of the fragility of life. I am a strong, fierce, flawed adult woman. I plan to remain that way in life, and in death.’

Stella Young –

When famous people die we often ask our friends – where were you when …. ??? I was in a petrol station filling up when I saw on the TV in the petrol station that Princess Di died. I was at Manor Farm oval meeting a friend to play soccer when he told me that Elvis had died. I was a peanut in my Mothers tummy when Winston Churchill died.  I remember being really moved by Steve Irwin’s death. I watched his funeral on TV.  When Bindy gave her eulogy, all 8 years old of her, confident and articulate, I turned into a blubbering wreck.

I was on the train today when I heard of Stella Young’s death. I was flipping through Facebook, trying to pass the time before arriving at work. And there it was, someone posted that Stella Young had died. I thought it was a hoax. It was not possible. And then posts started to appear rapidly announcing her passing. And I cried. I looked down at my iPad and cried. I walked to work from the train station and I cried. I had to stop at a café to compose myself. I ordered a coffee and I cried. Even now as I type this the tears are welling up.

But I never met Stella in person. Like most people interested in disability activism I knew her through her writing. I knew her through her television appearances. I knew her as an editor of the now defunct Ramp Up disability Blog. It was not until today that I realised just how much her work, her views and her life had impacted on mine.

I had the privilege of being contacted by her when she was editor of Ramp Up. You see, unbeknown to me, she was a reader of The Rebuttal. She had read a piece that I had written about a conference organiser who would not provide interpreters for me to attend. I wrote of how I put pressure on the conference organisers by emailing them and all of the speakers who were to present at the conference. She loved the piece and wanted to publish it on Ramp Up. “The Rebuttal”, said Stella, “..is awesome.” Coming from a person who is perhaps the best writer on disability of our age, this was high praise indeed.

When I read of her passing I was moved to post my own tribute to her on Facebook. The word that kept coming to me was Inspiration. I had to force myself to not use the word. People that followed Stella’s career would know of her loathing of the word inspiration. She wrote and spoke about this loathing often.

In a Ramp Up article Stella had this to say, “Inspiration porn shames people with disabilities. It says that if we fail to be happy, to smile and to live lives that make those around us feel good, it’s because we’re not trying hard enough. Our attitude is just not positive enough. It’s our fault. Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it’s all about attitude. And we’re not allowed to be angry and upset, because then we’d be “bad” disabled people. We wouldn’t be doing our very best to “overcome” our disabilities.”[1]

Until I read this piece I had always struggled to articulate the unease I felt about inspiration porn. I had always hated the photos of little disabled children struggling to walk on crutches or leg braces while TV celebrities wept as they looked on. I had always hated those videos of children who had received cochlear implants. Inevitably the child’s eyes open super wide as the implant is switched on and the headline screams “CHILD HEARS” These people cared and I hated it. Why????

But Stella had the answer. Said Stella of the motive behind inspiration porn, “…it’s there so that non-disabled people can put their worries into perspective. So they can go, “Oh well if that kid who doesn’t have any legs can smile while he’s having an awesome time, I should never, EVER feel bad about my life”. It’s there so that non-disabled people can look at us and think “well, it could be worse… I could be that person”.”

And that was it in a nutshell. Inspiration porn is designed to make non-disabled people feel good, not people with a disability. The motive is nearly always to make non-disabled people think – “ ..thank fuck I am not like that.” And that’s why I and many other people with a disability hate it – Because it makes people with a disability out to be lesser beings. They are deficit!

I will always be thankful to Stella for having the courage to say this loudly and publicly. She put into words what many of us felt but could not or feared to articulate. Stella pointed out often that if people with a disability protest or show our revulsion for inspiration porn they are made out to be miserable bastards. They are made out to be ungrateful and unreasonable. But if you were told every day that your existence is only worthwhile if you are able bodied and normal – Well pardon me if there is an overwhelming desire to say – UP YOURS!

So Stella Young has died. Of course we must grieve. Grief is a natural process. But we must not grieve too long. We have the responsibility to carry on Stella’s legacy. Through her wit, her charm, intellect and sheer desire she has created waves for the disability community to surf. Let’s use Stella’s death to create waves, to knock down barriers and change attitudes. As we do this let’s have fun, lets party and even knit. Let us show the world that disability is, more often than not, a life worth living – VALE Stella – I promise you your legacy will not go to waste.

I could not resist closing this tribute with the delicious example of black humour from my friend Samantha Connor who is, like all of us, devastated at Stella’s passing:

“There is a very competent lawyer in WA, Prue Hawkins, who also has OI. She is older than Stella but also has stylish hair and a flair for fashion so is often confused. I tell Shaye that Stella has died, and she tells me she often saw Stella in the city – Shaye works in law. No, Stella lived in Melbourne – you saw Prue, I tell her. Then I get the giggles thinking how funny Stella would have found the thought of thousands of people spotting Prue or others with OI and coming up to them, mouths open, saying ‘OMG I thought you were DEAD’ – she would have found their shock and horror deliciously amusing.”

Indeed I reckon Stella, with her impish sense of humour, would have found this hilarious!

Let the celebration of her life begin !!!

[1] http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm