When I was asked to write this article, I panicked for a split second. I panicked because it meant talking about the underlying tension that is a constant hum in my body and brain. And no, I don’t mean the spasticity caused by cerebral palsy (CP), although that’s a constant humming tension too. I’m talking about the constant tension that comes from the exhaustion of living in a world not built for you.
I often joke that having a disability is like having a full-time job, except you don’t get paid and there are no holidays. It can be relentless, feeling like you have to justify your every need while also fighting hard for any and all accommodations that might level the playing field.
For a long time (especially in my teenage years) I actively resisted the idea of being a disability advocate. I was so consumed with - and, if I’m honest, wrung out by - advocating for just myself that I couldn’t see a situation in which I had the energy to do it for anyone else. In those years when I fought it most, I was focused on everything from working to make sure my peers at school saw me as an equal with value, to navigating the complex world of endless medical appointments, treatments and surgeries.
It was all I could do to keep my head above water and convince my body it was worth getting out of bed to fight another day. I also wasn’t keen on the idea that being a disability advocate meant defining my life by my disability. Back then, I thought that was one of the worst things I could do for myself.
Now I realise that’s not true at all. Defining myself and my life by my disability is as obvious as saying I have brown hair or brown eyes. There’s no way that my life isn’t defined by the fact that I’ve grown up disabled, because it shapes the prism through which I see the world. It tells me a lot about the things I value and, equally, the things that don’t matter to me in the slightest.
I have a voice and a level of skill in speech, articulation and the motor skills involved in advocacy that not everyone with a disability has. Based on my original prognosis at birth, I wasn’t necessarily supposed to have those things. So I feel like I have a responsibility to speak up and advocate for the wider disability community on issues or patterns of behaviour that affect us.
Being a disability advocate (and seeing it as an actual job) is a choice I eventually made about a year ago, after I was asked to write a piece for the ABC on ableism and allyship. The response to that piece blew me away and since then I’ve been so lucky to work educating people and sharing my story in an effort to make the world better for disabled people everywhere.
But every advocate looks at their work differently - and it would be remiss of me not to explore the added and unacknowledged emotional labour that comes with advocating beyond yourself.
It can feel like you’re expected to respond to every ableist comment or piece of media on the public record and unfortunately, even in 2021, there are still a lot of those. It’s incredibly draining to be constantly confronted with the knowledge that there are people in the world who don’t believe you should have rights or value - who say that they could see nothing worse than a life like yours.
There are people who police the language we use to describe ourselves, our right to representation, who seem to steadfastly ignore what accessibility means and the countless resources painstakingly prepared by our community. People who see nothing wrong with not paying us for our time and work.
Being a disability advocate can feel a lot like pushing a boulder up a bloody steep hill. And then you get a message from a parent or a kid themselves, thanking you for making them feel seen or being grateful that their kid will grow up with people like you to learn from. And that just makes it all worth it. One day, I hope there’s no need for disability advocates like me but until then, I really love my job.
Discover more
Hannah Diviney
Hannah Diviney is a writer and disability advocate from Sydney, Australia. She's also the Editor-in-Chief of Missing Perspectives. You can follow Hannah's adventures on Instagram and Twitter.