I see life as like eating an ice cream – it’s often difficult, sometimes messy, but always enjoyable .… if you can find the sweetness in it! And it’s true. Living with cerebral palsy affects my whole life, and gives me my fair share of challenges.
But my life is still pretty big, busy and fabulous. I graduated from the University of Sydney with a Bachelor of Arts (Sociology) (Gender Studies) in 2013, achieving First Class Honours in Sociology. Now I’m an aunty, artist, academic and advocate. I love hanging out with my family and friends, and going to the theatre.
As you can see, I’ve had access to rich and rewarding opportunities. But I certainly didn’t get there on my own! Building connections and involvement in the community has been crucial in my life, and I believe that cultivating this is one of the most important things people with disability can do. We all need high quality and authentic relationships in our lives – whether with family, friends or support staff.
Not only can the people in our lives assist us on our journey, they also bolster us when we inevitably come up against roadblocks. I think of them as flowers in a garden, brightening up even the rainiest of days. I’ve experienced firsthand the invaluable difference support from others can make, but I also know that this can be complex and tricky to navigate.
Disabled people are all too often made to feel unwelcome and unwanted – literally stared down, patronised, and pushed out into the margins. It’s as if people would prefer that we didn’t leave our houses at all. We are unruly. We are a nuisance. We are excluded.
And for those of you who support people with disability, I’m sure you think that you would never act like that. But ableist attitudes are everywhere, and sometimes come unintentionally from those closest to us. In the little frustrations and annoyances that come when we make the most basic requests at the wrong time, when you don’t have time. In the jokes that you tell and the comments that you make to “blow off steam”, what you allow others to say. We feel it all.
We are talked about, but hardly ever talked to.
So building connections and inclusion is important, but so is being able to define ourselves, to know our worth and take up space in a way that can’t be ignored. This could be anything – from filmmaking and photography, to being more independent, having choice and control, finding joy, telling a story or something else entirely. And it starts with opening up a conversation about our lives and what they could be, while respecting that this may be different to what you think.
Sometimes for me, community and inclusion is as simple as my nightly routine of rewatching my favourite shows with my best friend who lives in Brisbane, while texting back and forth. It’s time just for us, to be happy and enjoy each other’s company away from the demands of everyday life.
People with disability may be exhausted, lacking in the energy and resources to know what we want or need. The simplest, most powerful place to start is to truly listen to us. When you have been constantly told that you deserve and should be grateful for the smallest crumb, this can be life-changing.
A couple of months ago I created a short film performance piece called “A Seed of a Dream”. It was written to celebrate the 30th anniversary of Living My Way, which I know provides such valuable support to me and so many others with disability. So the central message of my piece was to remind us all that having the support we need is a human right, and that every effort should be made to support us to live exactly the life we want on our own terms.
And the world needs more “big dreamers”. People who see possibilities, rather than barriers. People who aren’t afraid to try something new, who step outside their comfort zone and gently encourage others to do the same. People like that can change lives. They changed mine.
We should not have to let our dreams wither and die.
We should be able to nurture them, and watch them grow and bloom.