Mum had been a social worker in the UK for 20 years – in child protection. Because of her, we were drenched in social justice and systems theories. A human rights or social justice perspective on life was always there, mixed with her deep belief in the autonomy of children.
Mum’s a big advocate for the idea that children are not the chattel of their parents, but independent human beings with their own rights. She created the space for me to come to my own view about myself as a person, and then my cerebral palsy as a subset of that aspect of personhood.
There was never a thought that I was broken, which I’ve come to understand is a common thought that a lot of kids have as they grow up disabled. I never had that thought about myself. I have gone on a kind of journey with my self-conception of disability, enabled by the space that Tracey [Mum] gave me as a parent, and the boundless affection of my grandparents and my brother.
They were constant pillars of love and support, and Tracey gave me an intellectual framework in which to think. Not how to think, just ‘this is the space you can think in’. I could ask ‘What is this cerebral palsy? Like really?’ And she’d say, ‘Well what do you think it is?’ And I’d say, ‘Well, I can’t walk like Harry does, instead I crawl about’.’
There was never a thought that I was broken, which I’ve come to understand is a common thought that a lot of kids have as they grow up disabled.
It’s like you go to walk but there’s something not happening there. We used to say my brain telephone doesn’t ring up my legs properly. And I was totally happy explaining that to other people.
Relatively recently I’ve learnt how comparatively little I know about cerebral palsy because I’ve not been medicalised. It’s not necessary – what I need to know is what it means for me. Again, I’ve learnt that this is rare, not to be medicalised from a very early age.
My family believed I was deserving of love, respect and autonomy, and that I was a good person. And that gave me the space to think, ‘Okay, well, I might not be able to walk, but I’m not broken, I’m still okay. Let’s journey with this thing and see where we go.’ That carried me a long way through my childhood.
I always used to talk about journeying with disability. I conceptualised it as having this thing I wasn’t ashamed of. I wasn’t broken, I kind of travelled alongside it. And in that process, it shaped and moved me, and I shaped and moved it. From a very secure sense of self – I made my way with it.
I wouldn’t say that I didn’t identify as a disabled person, but as I moved more into the world of disability activism and identity, I noticed something. In one of his memoirs, [Barack] Obama talks about being a black man raised by a white mother and white grandparents in Hawaii in the ’60s, and he reflects on what that did to his racial identity and how unique his experience was.
He had people who supported him, encouraging him to engage with his identity as a black man. He says he never felt he needed to choose between Black America and White America; he felt able to legitimately live in both those spaces. That chimed with me: that sense of living a really unusual childhood that allows you to embody two things comfortably. Until I started getting involved in disability activism, I could have said with conviction that there is no disabled Australia and non-disabled Australia, there is only the Australian community.
When I got involved in disability activism, it was like I was three-quarters of the way there, but the fourth bit hadn’t slotted in yet. The big problem with that statement of Obama’s is that there is a Black America and a White America. He is just one of a very small number of people who feel their personal lives transcend that. And, there’s a lot of argument in black literature about whether that is a form of self-delusion.
Personally, I felt like I was finally breaking a self-delusion by getting involved in the disabled community. I even used to claim that while disability was part of who I was, it did not define me – I’d say that proudly. And then I had this lightbulb moment: What are you saying when you say that? It’s not about whether it defines you; you are defined by society, by it!’ And you can either claim your identity as a member of a group within society that is treated differently because of an impairment and understand the social model of disability – its emphasis on the collective creation of the negative aspects – or you can pretend to yourself that this is an individual thing, that you just get to journey with!
It was a bit of an epiphany moment: like, actually you have been individualising this, and when you say ‘it’s part of who I am but it does not define me’, it’s like saying ‘I have got this disease, but I won’t let it change who I am’. It’s not a negative thing. You have an impairment, but you are a disabled person because that is how you self-identify – you claim back that power. As somebody who is a member of a group subject to discrimination, but also as part of a community of people. And then we get to disabled culture, which is kind of a new concept in Australia.
You have an impairment, but you are a disabled person because that is how you self-identify – you claim back that power.
I feel so much more settled in myself since I had that moment of understanding. I think I had fooled myself into thinking that because I didn’t define myself as disabled, I could transcend the discrimination faced by disabled people. I had it impressed upon me less than so many other people because I avoided school (I was home-schooled). But still, it’s there. And it doesn’t mean that I haven’t had, in my life, moments of frustration or anger.
Sometimes the inaccessibility and ableism of the world in which we live really gets you down. And I’m sure that’s the same for everybody. There are moments when you can respond to that with eloquence and logic, and sometimes you just go ‘arghhhh’. I’ve had my share of ‘arghhhh’, as we all have. But I feel so much more comfortable with who I am, and wonderfully connected to the four million other disabled Australians. The prize for liberating myself from the illusion of not being defined as a disabled person is to come into a sense of collective community with other disabled people. And that’s incredibly affirming and wonderful.
Nothing in my life has changed me more for the better than knowing that I am loved by my family. And that’s what I hope people reading this take away. If you are a disabled kid growing up, love yourself. Or if you have just been gifted an incredible little baby that’s disabled, love them. Love the hell out of them. Treasure them as the incredible thing that they are. Treasure yourself as the incredible thing you are. Know that whatever you are, you are enough.
This article is the result of an interview by Chilla Bulbeck and is an edited extract from Growing Up Disabled in Australia, edited by Carly Findlay and published by Black Inc. Books earlier this month.
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