There is a quote from Rosemarie Garland-Thomson, a Professor of English and Bioethics, and a scholar of disability studies, which I think about quite a lot: ‘Disability is a culturally fabricated narrative of the body’.
I wanted to tell you about this quote because I think it invites you to ponder the stories we tell, and consistently are told, about disability and how these narratives frame how we think about it, how we write about it and how we, as a society, respond to physical or mental difference. I want to invite you to think about disability differently than you may have previously.
Disability is not a personal problem but a sociopolitical question. As the late disability activist Stella Young put it: “I am not wrong for the world I live in, the world I live in is not yet right for me!”
Many of the disadvantages people with disability face are social in origin; 45% of people with disability live on or below the poverty line. People with disability are half as likely to be employed as those without disability; two times more likely to be living in public housing and significantly less likely to have a tertiary education.
In 2014, Women with Disabilities Victoria released a landmark report that found women with disability are at least twice as likely to experience violence compared to women without disability. 90% of women with an intellectual disability have been sexually abused. As we, as a nation, strive to address violence against women, we must not forget women with disability and the simultaneous disadvantages we face. We, individually and as a society, need to take action. The time is now to address disability abuse and discrimination.
Disability is not an uncommon experience, with one in five people in Australia living with a disability. This becomes two in five if you include carers or family members. How would this number expand if we include lovers, friends and allies of people with disability? We are all touched by disability in some way. After all, we are all only temporarily able-bodied.
We will all age and our bodies and minds will change over our lifetimes.
As a writer and performer with disability, much of my work focuses on challenging and changing perceptions of disability. I aim to get people to question the mainstream belief that disability is a terrible tragedy or conversely that people with disability are inspirational solely because they have a different body or mind. Stella Young infamously labelled this as ‘inspiration porn’ in her TedX talk and made it clear: ‘Disability doesn't make you exceptional, but questioning what you think you know about it does.’
Stories provide an interesting and engaging way to challenge and change perceptions and, with one in five of us living with disability, we are hungry to read stories which reflect our lives. People with disability have valuable, nuanced and interesting stories to tell. There is immense power and reclamation for minorities in telling their own stories in their own words. The telling of maginalised stories can create personal and social change. This is also is true for people with disability.
As a young person growing up in a regional town, it would have made such a difference to my self-esteem and lessened my feelings of isolation if I could have read work by other people with disability, stories that depicted people with disability as whole, complete human beings leading rich and messy lives, having lovers, having children, living independently, finding joy and confidence in who they were.
Disability is an intrinsic part of the human experience. We can all learn something from those of us who are currently living with disability. We can learn about how to deal with a changing body or mind. We can learn not to be scared of disability and that, indeed, it is natural human variation and a very normal part of life.
We can learn, ultimately, that there is value in the experience of disability and even pride. I am proud of having a disability. I am proud of the unique perspectives it has given me, how it allows me to move through the world differently, to think deeply about the body, identity and social justice. I feel connected to other people with disability because of our shared experience of disadvantage and our struggle for a more equable society.
Disability is part of the diversity we celebrate in this country. We are 22% of the population. But we are nowhere near that percentage of the stories that are being told. It is time to see our stories in the mainstream. Alongside me there are writers like Eli Clare, Samantha Connor, El Gibbs and Carly Findlay who write and think politically about disability. This is not enough. We need more and more voices published every day. We need to hear more from people with disability who hold multiple marginalised identities, pay them for their work and to all boost their voices into the mainstream.
I want to see writers with disability published widely and in accessible formats so that people with a variety of disabilities can have access to and enjoy them.
I want to see writers, performers and artists with disability included in the programs of festivals and events as a matter of course.
I want mentorships by and for writers with disability, funding for writers with disability and paid positions within key literary organisations.
I want to read our stories, told by our voices, everyday.
About Jax Jacki Brown
Jax-Jacki Brown is a feminist, disability and queer rights activist and spoken-word performer with a BA in Communication and Cultural Studies (honours) which focused on the intersections between queer and disability identities. She is the independent producer of Quippings: Disability Unleashed, a disability performance troupe and is also a freelance writer and a workshop presenter on disability and sexuality for university departments, health and disability organisations.
This commission was made possible by the Australia Council for the Arts.