Dear Alice,
My timeline is filled with people mourning your loss – some people who knew you, but most (like me) who never had the honour. You made the world a better place. As I read about the impact you had on so many people, I keep circling back to all the ways you were a beacon for me.
When you won the McArthur Genius Award in 2024, you reminded us of the power of storytelling, how it ‘is a powerful form of resistance. It leaves evidence that we were here in a society that devalues, excludes and eliminates us.’ The Disability Visibility project – website and anthology – was some of the first content I read when I dove into disability community and culture. Your memoir, ‘Year of the Tiger,’ is arguably the most important disabled bible we have. I return to the Disability Intimacy anthology, flicking through its pages, finding solace in its paragraphs, whenever I feel the weight of ableism dragging me down. And we are lucky to have more of your writing to hold us on dark days.
Your next – final – anthology ‘Disability Vulnerability’ is scheduled for release early next year. Ironically, it ‘explores the precarity of life in the disabled community, focusing on the COVID-19 pandemic and ensuing fallout.’ Often, it feels futile to write or talk about the ongoing pandemic. I am usually the only person who masks in any given room. You couldn’t wear a mask, but you were vocal about the need for COVID precautions. You amplified the voices of people with Long COVID and refused to let them be forgotten. I hope, in your honour, more people will mask, will stay home if they have COVID symptoms, will consider ventilation and air quality, as you urged us to.
Alice, I have a confession to make: I’d intended to finish this piece days ago, but spasms and fatigue got in the way. At first, I was angry at my body and myself – why couldn’t I just push through? But that attitude is the antithesis of what you taught us, a clear contradiction to the disability pride you embodied. Instead, I requested an extension and decided to show myself some grace. You encouraged us to bask in the possibilities of crip time, to embrace the nonlinearity of our lives. I’m writing these words with the brightness on my laptop turned as low as it will go, with a heat pack on my legs, taking as many breaks as I feel I need. Alice, I’m trying. Creating my own mini crip revolution.
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When so many disability organisations in Australia and around the world were disgracefully silent about the genocide in Palestine, you showed us the meaning of disability justice. You articulated, time and time again, in your own words and by platforming those of disabled Palestinian and Jewish writers, that disability rights are inextricably linked to the rights of all other marginalised groups, especially Palestinians. When world leaders shrugged their shoulders (with the Australian Prime Minister deflecting responsibility on the basis that Australia “is not a major player in the Middle East”), you asserted that collective liberation is everyone’s responsibility. You balanced your advocacy with the understanding that showing up looks different for all of us, and that, “ everyone can do something with the time, energy, and resources they have.” Through Crips for eSims for Gaza, along with Leah Lakshmi Piepzna-Samarasinha and Jane Shi and a team of volunteers, you purchased over 20,000 eSims. Crips for eSims for Gaza has so far received more than $3 million in donations. In a Substack message, Leah and Jane have committed to continuing and documenting the work you did together.
So many disabled writers – including me – are confident enough to believe in the worth of our words and our lives – because of you.
When I worried about whether I would be a good cat mum, I thought of you and your beloved Bert and Ernie, how I would never question your worth as their mum. It would be an insult to you and all disability advocates – past and present – to believe my own internalised ableism. I adopted my darling Giles and if anything, I think he likes having a disabled mum who rests a lot.
Thank you, Alice. I hope you knew how much you meant to so many people. I hope you knew that you changed the world. You might be gone from this realm, but your legacy lives on.
I promise that we won’t let the bastards get us down. We’ll give them Hell instead.
Yours in crip solidarity,
Laura Pettenuzzo
Laura’s photo: Supplied (Image Description: Laura is smiling with one hand holding up her chin. She wears watermelon-shaped earrings.)
Alice’s photo: John D. and Catherine T. MacArthur Foundation; Creative Commons Attribution 4.0 international license (Image Description: a close up of Alice smiling while sitting in a wheelchair. She wears a pink and orange top.)
Laura Pettenuzzo is a disabled writer and accessible communication expert living on Wurundjeri country. Her words have appeared in places such as SBS, The Age, and Griffith Review.
You can follow Laura on Instagram: @thisgirl_writes
