Jax Jacki Brown: "'I want to be seen as a whole and complete human being, just as I am − disability included." Photo: Paul Dunn
Last Thursday, TEDXSydney launched the #StellasChallenge campaign at the Sydney Opera House. Despite being billed as "a major initiative designed to contribute to the social inclusion of people living with disabilities", the campaign has caused outrage in much of the disability community.
Named after the late disability activist Stella Young, #StellasChallenge encourages members of the public to ask people with disabilities a series of questions or conversation starters like such as "Would you mind if we talked about your disability first, so that I can understand how best to refer to it, and would you mind if we explored how it has impacted your life?"
Well, this isn't necessarily a bad thing, I hear you say. It's good that people want to learn more, right? But as Stella's friend and a wheelchair user myself, I have experienced first hand how reductive (and frankly repetitive) these questions can feel. Stella and I have spoken many times about the fact that it's not our disabilities which have impacted our lives, but the structural and economic exclusion surrounding it.
As Stella summed it up in her widely shared 2014 TedX talk, "Life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term disabled people quite deliberately because I subscribe to what's called the social model of disability, which tells us that we are more disabled… by the society that we live in than by our bodies and our diagnoses."
So it's particularly disappointing that TedXSydney appears to have misunderstood this important part of her message.
For one thing, the wording of #Stellaschallenge seems to suggest that all she was advocating for was a change in attitudes. But if you have read Stella's work, or if you had known her as a friend, she made it clear, repeatedly, that she believed we deserved much more than an awareness campaign.
Indeed, the act of "questioning what you think you know about disability" calls not so much for a literal inquiry of facts, but the dismantling of presumptions, stereotypes and misconceptions you may hold about people with disabilities, what our lives are like and even questioning the structures and institutions in society which have taught you to think that way.
More importantly, it means questioning how we can address disability disadvantage and then actually implementing the changes that will improve our lives.
In Australia, almost one in five people have a disability and yet 45 percent of us live on or below the poverty line. A landmark report by Women with Disabilities Victoria into women with disability experience of violence in 2014 found that we are at least twice as likely to experience violence as women without disability, with 90 percent of women with intellectual disability having experienced sexual abuse. These are the issues we desperately need to address for people with disability. Not asking us questions but taking action.
Last week, a petition has been launched to call for these concerns to be addressed in #Stellaschallenge. So far, it has attracted almost 1,000 signatures.
We are angry, and we are deeply saddened that Stella's name is being used to spearhead a campaign that is not being led by or co-designed by people with disabilities. Instead, TedXSydney had chosen to consult with disability service providers and charities that are not run by people with disabilities.
Stella was not a supporter of the onus being placed on people with disabilities to tell strangers about our conditions. She was also not a fan of portraying disability as a tragedy.
As disability activist group Crip Army states, "An awareness campaign will not allow us entry into the job market, or make the built environment accessible, or stop abuse, or discrimination. An awareness campaign will not find us accessible housing, or a way out of poverty, or opportunity to make our own decisions about how we live our own lives."
The problem isn't a lack of "conversation" about disability. We're talking. You're just not listening. #StellasChallenge— Rabbit KM (@BathysphereHat) May 21, 2015
In response to the social media outrage, TedXSydney have apologised for the problematic approach. However, it remains unclear whether the project will continue to go ahead after so much criticism or if people with disability will now be hired to co-design the project or just consulted with. If the campaign isn't led by people with disability who understand what Stella's vision for an accessible and inclusive society really looked like, then it cannot be working towards the real inclusion and change Stella fought so hard for in her life.
TedXSydney's campaign has real reach and substantial funding behind it. It could be an opportunity to really address disability disadvantage, to do more than start a conversation -- a conversation that has already been had many times over in the lives of people with disability.
We need more than a shift in attitude. We need real change in access to key areas of society for people with disability in the areas of employment, accessible housing, freedom from discrimination and violence and changing infrastructure.
In Stella's own words: "What if we challenged people to call out ableism when they see it? Perhaps, next time you go to a restaurant that doesn't have an accessible toilet, you could ask the staff why that is the case and suggest they rectify that situation. Or you could keep your eyes peeled in your local community for opportunities to make things more accessible and raise it at local government level. No tactile indicators at curbs on your path to work? Send a quick email to council."
We need to "encourage people to speak up as allies alongside people with disabilities"-- a few patronising questions just won't cut it.