This is not a tribute post to Stella Young. I didn’t know her, there will be many of those, and one of the reasons I so greatly admired her is how strongly she objected to admiration. So this is about me, disability, inspiration porn, and “positive thinking.”
If you haven’t heard of Stella Young, probably one of the best things to do is watch her TED talk.
“I am not here to inspire you. I am here to tell you we have been lied to. We have been sold the lie that disability is a Bad Thing. Capital B, Capital T. And to live with disability makes you exceptional. It’s not a Bad Thing. And it doesn’t make you exceptional.”
Stella subscribed to the “social model of disability” – the idea that we’re more disabled by the world we live in than by our bodies. When asked if she was inspired by others with disabilities, she said yes, of course, but;
“We are learning from each other strength and endurance not against our bodies and our diagnoses but against a world that exceptionalises and objectifies us.”
Stella was able to express far more eloquently than I why I feel so uncomfortable when people call me inspiring. I’ve always been terrible with any sort of compliment anyway, but if the compliment is couched with the unspoken words “for a disabled person,” things get so much worse. You’re exceptionalising me. You’re objectifying me as woman with a disability. Believe me, I get enough objectification for just the first one.
Stella called this behaviour and all its various expressions ‘disability porn.’ “It objectifies disabled people for the benefit of non-disabled people.”
When you put it like that’s it’s pretty obvious why I feel uncomfortable with being called an inspiration.
And then there was this, too.
I’ve always hated that quote with a passion and she nailed part of the reason why.
I mean, of course it’s bullshit. It ignores and belittles the unarguable physical reality I live with, and it tells me my emotions about that reality are my problem. NOPE.
It’s from the “pull yourself up by your bootstraps” school of thought that manages to completely destroy people’s self belief, and it applies to mental health too.
I was reminded of this line from the Hyperbole and Half series on depression: “Trying to use willpower to overcome the apathetic sort of sadness that accompanies depression is like a person with no arms trying to punch themselves until their hands grow back. A fundamental component of the plan is missing and it isn’t going to work.”
A fundamental component of the plan to “just have a positive attitude” is missing and it isn’t going to work.
That’s the thing about disability porn. It doesn’t just expect able-bodied people to feel shamed into motivation. It expects disabled people to be, too.
This is not to say that I don’t believe being positive helps me. It does. But I work fucking hard at having that attitude, and I refuse to be ashamed about the times that I don’t. I don’t expect myself to be able to overcome my spine fusing together by changing my attitude. And I don’t expect anyone else to encourage me to do that.
There’s another thing about being “an inspiration.” You’re handing someone a mantle. Do you have any idea of the weight of maintaining it?
Sometimes, I am going to feel bad. I am going to be pissed off about what’s happened to me. I may be petulant and angry and childish and loud and sad and I AM ALLOWED because that is NORMAL.
Acknowledgement and acceptance of that, by both myself and others, is really, really, important. The “dead fish” gag in Hyperbole and Half Depression Part Two really illustrates this.
Obviously, I’m not saying that my disability, or my depression, means my fish are dead. Not by a long shot. But sometimes, it’s gonna feel that way. And that’s ok. Me pushing through that isn’t inspiring. It’s just me living my life.
Thank you, Stella. For everything you said and everything you did that helped disabled and able-bodied people have real conversations about disability. This is a great loss that will be felt far.
In November, Stella wrote a letter to her 80 year-old-self. It’s fucking good writing, and a good note to finish on, so go read it.
Good post and well made points, I must say. Hence we must tell WINZ and government that it is more important to change society and people’s thinking, so “disabled” are respected for who they are, and given the fair and deserved chances and security to take part in social life.
All their (WINZ’s)talk about ‘enablement’ and “freeing” sick and disabled from “benefit dependence” is BS, when expectations are simply put onto people to have the “right attitude”, but no expectations are put to employers and others, to provide the framework and social environment that allows and empowers all to participate.
I fear that we are still a far way from the UN convention on the rights of disabled persons being fully respected and honoured.
Let us start also with a universal basic income that all can life off, no matter whether they do some paid or voluntary work or study or whatever else, which can also serve as a basic tax free income or credit, so people still can strive to earn more if they can and want to.
Sadly the new “science” the government now relies on seems intent on doing away with the “social” part of what used to be the social model, or now is often being integrated into a “bio psycho social model”, which has though somehow been perverted to serve the interest of claims minimising insurers, cost saving governments and ACC.
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