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From Jax Jacki Brown for
Daily Life in Australia:
May 21 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 (pictured), #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."
