The Complete Inelegance Of Tokenism
Addison Rd Community Centre for Marrickville Council's for International Day for People with Disability, November 2014.
Okay. So, as I was thinking about what I was going to say today, I realised that I seem to be getting increasingly annoyed every time December 3rd rolls around. I have always been somewhat cynical about the existence of an International Day for People with Disability, or more precisely, about the way it is celebrated.
Although tonight is a precursor to all those ‘celebrations”, I think it’s apt that this event is called “Complete Elegance”, because disability doesn’t often get equated with anything elegant. And when it is nicely presented, it’s the usual messages about how people with physical limitations, “haven’t let their disability stop them from living a fulfilling life”. There’s something about that sentiment that sits uneasily with me, because this places onus on the individual to triumph over [socially-constructed] adversity. We celebrate these feats as the embodiment of bravery and courage, and in some ways, they are. They certainly demonstrate human capacity for persisting with, and resisting against, uncompromising circumstances. But that doesn’t make the social disadvantage we face any less crippling - pun intended – and make our lives even more challenging.
I try not to play into the usual narratives of pity or inspirational courage that pervade the media by just being real and honest. Yet, when I write anything about my body, I still feel I have to preface it, by reiterating that I don’t feel my physicality is something I have to overcome.
I have been known to say that every time I go out alone, it is a political statement, but really, that isn’t technically true. Nine times out of ten, I just need to go shopping, get to that appointment, or I just simply want to get a coffee. These acts aren’t political in my mind (or not in that moment anyway), they are just part of what I do, what everyone does, to function and to sustain their life. Yet, because non-normative bodies and minds aren’t generally seen as being able to amount to anything resembling an ordinary existence, doing mundane things is perceived as courageous.
Now and then I even get congratulated for being out there living my life. Have you ever considered why people do this, and why people with disability are seen as brave? I suspect it’s not only because society de-normalises our existence, but also because people know how inaccessible society is for those of us with disability. When we overcome the numerous obstacles involved in heading out to buy, say a loaf of bread, it’s apparently an inspirational act. I mean, really, is this misconception necessary? We are just normal human beings, who occasionally may want toast for breakfast. With the imminent introduction of the national disability insurance scheme, people will be able to chose where to spend their funding, and thus be more free to access their community. And I truly hope that society will be forced to adapt to our disabilities more meaningfully. I eagerly await the day, where people aren’t shocked that I’m out, and that I’m out without a carer. The term “accessibility” shouldn’t be confined and defined in terms of disability, in terms of ramps and lifts. It applies to everyone and every situation.
Think about it. Everyone has some kind of inadequacy or another, although those of us with physical and cognitive disabilities are sometimes more conspicuous. It all depends on how you frame and measure inability, and people with problematic bodies are obviously more physically impaired than the average, but it’s definitely a spectrum.
For me, my body isn’t generally something that I feel I have to overcome, or put up with. From the fraught neuronal pathways, which my brain hasn’t been able to figure out how to navigate, or the untamed way my muscles move, to the absence of having natural speech, all part of me. They are the reason I am who I am. And let’s be honest, without my body, I wouldn’t exist, and yet most see it as lacking and not capable. In spite of this, I am forever grateful and amazed at how stubborn and resilient my body is, and how it refuses to conform to ideals of beauty or what others think it should be. My life isn’t an act of courage or of bravery, nor should my physical appearance elicit pity. My greatest daily battles are against the social pressure to conform to people’s expectations about how I look, act, think and feel.
I am lucky in that I can appreciate and embody the fragility on which human existence hinges, which makes the majority of people uncomfortable. It allows me to just keep on keeping on. A lot of people with disability don’t have the support, access to education, and services to meet their daily needs. Thus they don’t have a chance to accept their body as it is, nor learn to ignore the fact that society has a very narrow view of what body function and beauty look like.
The feel-good stories about disability that appear in the glossy pages of magazines, are often a result of people caring enough and being willing to fight. I am certain that that person excelling at life and who “beat the odds” had people that challenged the systems that denied services to them (because services are always denied at some point). I fail to see the significance of having this one day of social recognition and championing of our achievements, when the wider society constantly marginalises us every day.
What if International Day of People With Disability was a day when all impaired bodies were celebrated and appreciated for what they look like, and what if people with intellectual disability were appreciated for how they navigate the world? I know this suggestion might seem like a paradox, as a common phrase in disability circles tells us to “see the person, not the disability”. But once we are used to seeing the appearance of disability in a normalised environment, we can stop seeing it as something we can’t discuss, and then we can get to know and include people more genuinely.
Just some of my thoughts,
Thank you for listening