It's not what I thought.
That’s the way I’ve described parenting a child with disabilities and especially intellectual disability, which I believe is the most stigmatized difference in our culture.
The unexamined images lodged in my psyche – that disability wasn’t normal because it didn’t “exist” in my schools or that it was shameful because my friend’s brother jumped from the back of the station wagon, head down, and ran inside when he was dropped off from his sheltered workshop – are inadequate to describe the richness and complexity of my son’s life.
I want to convey this to others who haven’t walked in my shoes. But often I can’t find the words, because maybe they don’t exist in our lexicon. I want to tell a story or take a photo that shakes people out of their clunky mindsets. But most people don’t really want to listen or see.
Perhaps that’s why I’m so excited about the work of Sue Austin, a British performance artist who’s shattering common perceptions about the wheelchair by taking it places it’s never been before.
As part of the Cultural Olympiad events in London, people are watching Sue move effortlessly underwater like a mermaid – except she’s doing it in a wheelchair.
Motors under the chair propel her forward while Sue steers two acrylic hydroplane “fins” that curve out from the footplate with her feet: up, down, side to side and loop the loop, like a pilot doing graceful air manoeuvres.
Sue appears weightless, unlimited, even glamorous – her long dark hair waving behind the chair, a rush of oxygen-tank bubbles escaping upwards and a school of exotic orange fish passing by.
But something about what Sue calls "Creating the Spectacle" upends the spectator. The liberating images of life under the sea jar with our conventional notions of wheelchairs.
“I wanted to open up a new space where people feel the clash of their preconceptions meeting this new image, and it allows people to view a wheelchair in a completely different way,” Sue says. "I wanted to create a narrative that frees everyone.”
Sue began using a power wheelchair in 1996 after a virus attacked her nervous system and she lost her mobility and balance.
“I’d become housebound and my first experience trying a power chair was ‘this is my freedom,’” she says. “It means I can get back out into life and into the world and it’s so exciting to be able to zoom along and feel the wind on my face.”
She left her job in mental health and went back to school to pursue a degree in fine arts. "It kept me focused on what I could do and how I could see the world in a different way that was valuable," she says.
"When you acquire a chronic illness or disability, you can get trapped into thinking your life has ended and focusing on what you’ve lost, rather than on what can evolve from living life in a different way.”
Even though Sue viewed her wheelchair as freeing, she felt weighed down by people who saw it as a symbol of something broken or limited. "The way people reacted to me completely changed. They saw disability as some kind of tragedy. I came to understand that I’d internalized that message.”
Sue decided to incorporate her wheelchair into her art “playing with it, painting it and I found people reacted really positively to it.”
In 2005 Sue learned to scuba dive and was intrigued with the idea of bringing together scuba gear and her wheelchair in an art performance. “The ideas attached to scuba equipment are ones of excitement, adventure and expansion,” she says.
Like diving gear, a wheelchair extends a person’s activity in the world. But when Sue asked people what came to mind when they heard the word wheelchair, they said “‘fear,’ ‘restriction,’ ‘limitation’ and ‘pity.’”
Sue worked with diving experts and engineers to turn a National Health Service wheelchair into one that could be operated underwater.
Her project “Creating the Spectacle” is one of 29 commissions for Unlimited, a program of the Cultural Olympiad and London 2012 Festival that celebrates art from disabled and deaf artists. It includes screenings of a film of her flying through the water that was shown as part of the Paralympic Flame Festivals, as well as live events in Portland linked to the Paralympic sailing events.
“I’m trying to create work that is so surprising that people don’t have a framework to understand it,” Sue says. “They can’t relate it to their ‘normal’ attitudes about a wheelchair so they end up having to go ‘Wow, how did you do that?' When non-disabled people see it they say ‘I want to go in one of those.’”
Sue describes diving with her chair as “complete freedom and joy. In future footage of the project I’m literally doing loop the loop and it’s like flying in space."
Sue credits her art training with enabling her to “refind my identity and a sense of creating something of value in the world. Through art I could create new stories about how seeing the world differently from a chair could have its own unique value.”
She wants to raise the profile of art shaped by people living with disability. “It brings their unique perspective into the world.”
An important part of Sue's art is the images it leaves in viewers' minds. "Once people have the idea of the underwater wheelchair in their mind, where it's never existed before, they become part of the artwork. They're expanding the intention of the art which is to transform preconceptions."
Patents are pending on her underwater wheelchair and she hopes to work on a future version that would give a person with quadriplegia the ability to scuba dive with mouth controls.