I met Stella Young once, at a party. Our brief interaction – drinks in hand, dancing right beside the sound system – left me intimidated by the speed of her wit and disarmed by her charm.
The same week I went shopping with a friend, who uses a wheelchair. She is also non-verbal, meaning that some physiological feature negates her ability to speak, but she has no intellectual disability (though this is often assumed).
A well-meaning woman came up to us in the mall and shouted, ‘Hello, person!’ She touched my friend on the arm, as if her body was public property. ‘Hello, carer!’ she said to me.
And although, in that moment, I was there in my capacity as a support worker, I was angry that the relationship was assumed, as if the wheelchair contradicted the possibility of any other association. Could she not have been my friend, my sister, my partner or my colleague? Did her wheelchair use automatically render her incapable of the typical interaction we all enjoy?
By assuming that I was a carer this woman betrayed an attitude to disability that I often encounter when I mention my work: that disabled people exist only to be bathed, fed and put to bed; that life with disability is hard, boring and constant pain; that people with disabilities have no friends and are a burden on those who care for them. Or, to be blunt, that life with disability is worse than death.
The stranger’s well-meaning comment was wrapped in a discourse to which I am often exposed. As an able-bodied person immersed in the disability community, those on the outside often tell me they’d rather die than wake up in a wheelchair. People often expect me to commiserate, to understand, but I generally just tell them they’d wake in a bed, not a wheelchair, and walk away.
What I disliked the most in this shopping mall encounter was the validation that the stranger seemed to gain from interacting with us.
‘I’m the sort of person who says hello to people,’ she said, a benign smile upon her face.
And that’s great, except she didn’t walk up to the young couple in the coffee shop beside us and stroke each of them on the arm. She didn’t acknowledge the numerous people who had turned to wonder at this loud and inappropriate exchange. Instead she objectified my friend, treating her as the kind of inspiration porn that Stella Young spoke so eloquently against, and I was angry.
I have been a support worker for almost six years now, predominantly with kids and young adults who need the kind of complex care you have to be trained in. Before scoring a job with funniest twenty-one year old I’ve ever met (with whom I spent the better part of the following three years watching the Simpsons) I had been a nanny for many years and also cared for my mother in the last months of her life. The things I am – patient, energetic, and excellent at administering medication – conspired with the things I am not – content with regular hours, able to sit still – to make me an ideal fit for the job.
I didn’t go into disability work to be a better person or to ‘give’ anything in particular. Through my mother’s illness, I had developed a reliance on my own necessity, and I was selfish in my need to be needed. I still feel relief when I walk into a home and hear the words, ‘Thank God you’re here,’ tumble from a grateful mother’s throat, even though I know that my validation comes at someone else’s suffering.
I couldn’t articulate any of this until I came across the work of Stella Young. Her TED Talk, ‘I’m Not You’re Inspiration, Thank You Very Much’, gave voice to the discomfort I felt within myself when spending time with friends and clients in the community, and the outrage I felt in my role as an advocate for a young man I worked with in his search for independent housing and work.
Young made it clear that being disabled does not make someone exceptional, and that doing your best in the body you’ve got isn’t brave. I have to say that I have worked with people who I do consider brave. I think it’s brave to want to leave the house in a wheelchair that causes excruciating pain. I think it’s pretty exceptional to tell jokes in a series of blinks and smiles and make a clear point, as one young man I worked with did, in the same way I think performing in front of thousands of people doing stand-up is pretty bloody exceptional. I think going to school each day is brave for any kid who faces vicious bullying, and I think it sucks that I know quite a few disabled children for whom this is a reality.
Young subscribed to the social model of disability, which, in her words, ‘tells us that we are more disabled than the society that we live in than by our bodies and our diagnosis … no amount of smiling at a flight of stairs has ever made it turn into a ramp.’ To this end she always referred to disabled people rather than people with a disability.
And I get it, though I also believe that no amount of public understanding or accessible parking is going to make a little boy I know on the autism spectrum be able to stand the sensation of rain on his skin. Maybe more funding, more services, more research and more people voting based on disability policy will. Maybe. But I’m not sure that these things will ever cure the bowel obstructions brought on by severe scoliosis for some, or the ability to transition from one task to another without significant anxiety for some others. Sometimes I think it’s important to use phrasing that puts the person first, particularly when comes first all too often.
What matters is that this debate is happening and is happening often, and that is thanks to Stella Young. Her wit was acerbic and her opinions strident. Her work as a writer and comedian was often received with debate. But that’s the point.
I am grateful that Stella Young offered me the tools I’ve needed when advocating for the education of the kids I’ve cared for. I am grateful that I’ve learned to check myself, often, in my work and in my personal life. I have learned to think critically and dangerously about my own perception of disability. Mostly because Stella Young’s writing told me to.
Stella Young didn’t inspire me. She challenged me. She made me double check the accessibility of any venue in which I held an event and she made me ask myself the kind of questions I didn’t always want the answer to.
I hope that her legacy is more people being able to live pretty mundane lives without comment. I hope, too, that Stella Young has readied the platform for future fierce, funny and smart leaders to speak up on the causes that fill them with fire.
One day we’ll live in a world where no one feels compelled to support two friends in their ‘amazing’ trip to the mall to buy sushi, and instead that mall will be filled with shop aisles wide enough to navigate. And it’ll be thanks, in huge part, to Stella Young.
Young’s family have asked that people consider making a donations in support of Domestic Violence Victoria, a cause about which she was intensely passionate.