A note on language and perspective —
Language has always fascinated me. I love the way it evolves almost constantly, especially when words are reclaimed that were once loathed or used to insult and dehumanise certain people. The evolution of the word ‘queer’ is a prime example. Where there has for the past couple of decades been a preference for person-first language, that is ‘person with a disability; person with autism’, in more recent years this has cycled back toward identity-first language, that is ‘disabled person; autistic person’. This is my personal preference for two reasons. For one, I see my disability, including my autism, as central to my identity. It is in the very core of my being. It is, quite literally, under my skin. It is not something I can either have with me or leave behind like a handbag or a wallet. I am disabled in the same way I am Australian, not ‘a person with Australianness’. Second, I believe in the social model of disability. The social model, as opposed to the medical or pathologised model of disability, posits that it is not the disability — the physical, cognitive, sensory, or neurological difference — that needs to be fixed. Instead, our collective reactions to those differences as a society are what present the problem. In other words, we are largely rendered disabled by environments that present unnecessary and surmountable barriers to our free and easy participation.
Of course, there are some limits to this model. A person with chronic fatigue, for example, may continue to experience extreme tiredness that will from time to time make it difficult for them to work and socialise. This will remain the case no matter how many lifts, ramps, Easy English documents, or tactile pathway indicators we provide.
But even with these limitations, the social model remains infinitely preferable to me, rather than one that tells the world I was born broken and my entire life serves as a cautionary tale.
In saying all this, in recognition of the many nuances and opinions that exist, in this book I will use person-first and identity-first language interchangeably.
When I was first offered the opportunity to write this book, two feelings hit me in perfect unison: first, humbled excitement for the chance to do the thing I love most in the world, writing, about one of the subjects that means the most to me. But I was simultaneously struck by anxiety. At first it was the garden-variety anxiety, the one that has been my near constant companion since early childhood. The one that occasionally wakes me between the hours of 1:00 and 3:30am just to go over the mistakes I made in my Year 12 French exam in 2006. It is a natural, in-built safety mechanism that has long gone above and beyond its initial job description. Not only does it alert me to wolves that may eat me in the night and the potential for me to walk into oncoming traffic; now it regularly alerts me to a clear and present danger that I am unable to escape: myself. If I write the book, chances are it will not be good enough, whatever that means. But if I don’t, then I have already failed because I did not take the chance.
And then, different anxiety quickly became more pressing. How could I, with the word limit of a mini book, possibly cover the full gamut of issues, thoughts, feelings, and experiences that fall under the label of ‘disability’?
Moreover, how could I, as a disabled person of relative privilege thanks to factors including but not limited to my skin colour and employment opportunities, be the right person to take on such a task? I was gripped by worry at the idea that some well-meaning person wanting to learn about disability might pick up this book and see it as some kind of comprehensive go-to guide on the lived experiences of disabled people. Neither I, nor any one person, can provide this — and that is simply because we are all different. Because we are human.
This book is not so much about disability itself as it is about disability serving as a lens to amplify and inform a kaleidoscope of human experiences.
I want this book to be about making mistakes. About learning through living. About challenging perceptions; the way in which we are perceived by others and by ourselves. And, perhaps above all, I want this to be a book about love. Love of the world around us and the belief in our ability to create a better one. Gentle, curious love of each other exactly as we are, and the quest for unapologetic and unfaltering love of ourselves. Love for everything we have been, as the fuel for everything we will become.
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