TEDxSydney has been getting a lot of bad press from the disability community lately. This is because of their very poorly thought out #StellasChallenge campaign. The campaign sought to capitalize on the message and popularity of late disabled comedian Stella Young. The campaign has similarities to the doomed Starbucks campaign Race Together which sought to start unsolicited discussions about race between baristas and their customers. The short-lived campaign was soundly mocked by many and died a quick death.
Similarly the #StellasChallenge suggested that nondisabled people should begin asking disabled people unsolicited probing questions about their lived experience. This was supposed to help them better understand the disabled social experience.
Disabled people were however not wowed by the plan, which has been criticized for being implemented without the input of actual disabled people.
If it had been they might have learned that nondisabled strangers asking disabled people unsolicited probing questions already happens a lot.
It happens while we’re grocery shopping
It happens while we’re rushing to catch a bus
It happens while we are out with our children
Basically any time a disabled person leaves their house, they run the risk of being accosted by random strangers who feel entitled to ask personal questions about our lives and bodies. This has been happening for decades (at least I can measure how long it’s been happening to me in decades and I doubt it started with me). In all the time this has been going on, it doesn’t seem to have had a measurable impact on improving our experiences in society. Case and point, I still run the risk of being asked random questions about my medical history every time I leave the house.
Here is how I view these interactions. They are very much a power play which tend to boil down to a few motivations.
“You are different from me, explain yourself”
This comes from a pure place of privilege and power. The idea that you can start asking someone personal and often medical questions where ever and whenever you want without pushback. If you get pushback you become defensive and say things like “calm down, I’m just trying to learn” or “don’t you want to be an advocate for yourself?”
“Your presence here makes me feel uncomfortable, comfort me by being compliant and nonthreatening”
This comes from ignorance and fear and an inflated sense of danger. Why people find disabled people inherently frightening I can’t fathom. Getting over their prejudices does not seem to be a viable option. We are expected to coddle them and not react to their fear.
“I don’t think you should be in this particular space, justify your right to be here”
This happens when you show up somewhere they don’t expect you to be like in a work or education setting. This is where you hear derisive comments about “affirmative action” and “taking jobs or places from more deserving people”
These interactions always happen on a purely individual level and even if you manage to give the questioner what they want. It only applies to you. At best this is a way to humanize disabled people one at a time to a single person at a time, a circumstance that needs to be repeated every time you meet someone new.
So even if the practice of randomly demanding information of disabled people wasn’t invasive and oppressive, it is not an effective teaching tool.
If the goal is to truly learn about the disabled experience, it should not be coming from a single acquaintance or a perfect stranger. While there are a myriad of stereotypes about disability. There is an even broader array of experienced within the disabled community. It is unreasonable to expect a single individual selected at random to be able to do that diversity justice.
In fact the very idea that speaking to individuals is a good way to learn about disability, only reinforces the idea that disability is a uniform experience.
A far better way is to engage with disabled people on their own terms and to engage widely. This way you don’t risk interrupting us when we’re living our lives and have plans. It means we’ve invited you to engage, usually in spaces where we have some control if the questions get inappropriate or offensive. It also shows a more real desire to learn and engage in discourse rather than an interrogation.
Some examples of places you can look
Blogs (like this one or many others)
There is an entire academic discipline called Disability Studies. Some universities with these programs offer their courses online if you don’t have a program near you (University of Winnipeg is one).
Ultimately remember that the lives and time of disabled people have value and that we don’t owe you explanations for our diagnoses or our assistive devices simply because it is convenient to you. We deserve to be able to exist in the world without harassment.
And if you are genuinely trying to learn remember that a person saying no to answering your questions is a lesson in and of itself. Respect it.