On Thursday, May 21, TEDxSydney announced an initiative called #StellasChallenge. Named in honor of Stella Young, the late writer, advocate and comedian who was a featured speaker at TEDxSydney 2014, the initiative was designed to, “contribute to the social inclusion of people living with disabilities.” To that end, TEDxSydney plans to “galvnize its creative and resourceful network to commission a national multi-media campaign, designed to lead the shift towards social inclusion for people living with a disability.”
The initial announcement outlined three ways people can participate in the challenge (these are TEDxSydney ideas – not mine):
1. Contibute expertise to become a Founding Producer to create the campaign.
2. Connect by having a conversation with someone with a disability, their families or their carers and find out what they want to see changed.
3. Watch Stella’s video.
I am not an Australian but I am a person with a disability who has lived in Australia. I never had the chance to meet Stella in person, but we did have some online interaction immediately prior to her death in December and had intentions of trying to meet during my recent trip to Australia in March.
Even though I never met Stella, I think the last thing the she would want – more importanty the last thing people with disabilities need – is an awareness campaign.
Think about your personal life and daily routines. Are you aware there are people with disabilities in your community? Can you name someone who uses a wheelchair, who is blind, who has a learning disability? Do you know they face some challenges in their lives? I thought you might.
People with disabilities are part of the fabric of our communities, yet they are often marginalized or face discrimination. They face barriers to employment, housing, medical care and economic stability.
On Wednesday, in my Redefining Disability Challenge post, I quoted disability statistics for the United States. The numbers are sobering. The source for many of my statistics is the American Community Survey which can be found on www.disabiltystatistics.org. Twenty percent of working-age persons with a disability were employed full time for a full year. Only 12% of non-institutionalized working-age persons with a disability have attained a bachelor degree or higher. Twenty six percent of adults with disabilities could not see a doctor due to cost in the past twelve months.
The original #StellasChallenge campaign may have been designed with good intentions, but I am not the only person who thinks TEDxSydney missed the mark. It has been amazing to see various social media outlets come alive with messages from people with disabilities speaking out against the campaign.
The primary reason I have reservations about the campaign is because part of the campaign encourages non-disabled people to ask people with disabilities questions – and if you can’t find a person with a disability then ask their family or their carers. They recommend you start by asking, “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?” (As an aside, that is more than one question. And I strongly dislike the word “carers.” As if I or anyone else exist just to be cared for. I prefer “Personal Assistant” to describe the women I hire to assist me with my daily tasks.)
I am all about using questions to start a conversation with a strangers. I do it frequently. “How are you today?” “Isn’t the sunshine glorious?” “Do you think winter will ever end?”
People with disabilities face questions from strangers ALL. THE. TIME. As a wheelchair user, I hear at least one of these questions from a stranger at least once a week and have heard them for as long as I can remember.
“Do you have a license for that thing?!”
“How fast can that go?”
“What’s the speed limit here?”
“What happened to you?”
“Do you know … (insert the name of any other person with a disability who lives within 100 miles here)?”
I don’t mind talking about my disability. I am happy to discuss it. But when it is always the first thing a stranger comments on, it can feel as if all the other amazing things about me don’t matter to them. And it can make me defensive as I try to illustrate (once again) how I am more than the shiny piece of metal attached to my butt.
The questions proposed by TEDxSydney define a person by their disability. Not their hobbies, their interests, their careers or accomplishments.
Like me, Stella refused to let others define her by her disability. Of course, she acknowledged its impact on her life. But she fought for the right to determine how she spoke about her disability and she was passionate about the everyday struggles faced by people with disabilities.
During her life, Stella was editor of RampUp, a website hosted by the Australian Broadcasting Company which served as an online space for news and discussion about disability in Australia. I visited RampUp frequently because it was a place where I could read disability stories written and shared by other people with disabilities. It was where I was first introduced to Stella’s brilliant writing, and encouraged to try sharing stories of my own.
RampUp stopped creating new content when funding was cut in 2014. If TEDxSydney really wants to honor Stella’s legacy, they could consider putting efforts into reestablishing the site to the vital resource it was. This would give people with disabilities the space to continue to share their words about their lives, offering them the chance to tell their stories as they wish, without needing to endure yet another probing question from a stranger.
Yesterday, TEDxSydney posted an update on the #StellasChallenge website. They have pledged to listen to the complaints and suggestions raised by members of the “disabilty sector” (their words – not mine). I really hope they do use this as an opportunity to fully engage members of the disability community to create a project Stella and the rest of us can be truly proud of.