Paying Attention: Fiona Murphy talks with El Gibbs, Fiona Wright, Hannah Diviney and Michelle Law

On the last day of the Sydney Writers’ Festival 2022 I went to an afternoon session called ‘Paying Attention’. It was curated by Deaf poet and essayist Fiona Murphy, author of the acclaimed 2021 memoir The Shape of Sound.

I was there because I’m interested in the idea and practice of paying attention – and I love the writing of two of the panellists, Fiona Murphy and Fiona Wright. Beyond that I had no idea what to expect. It turned out to be a riveting, illuminating, funny and very moving conclusion to my SWF 2022.

Murphy had invited four writers with disability and chronic illness – El Gibbs (live via video), Fiona Wright, Hannah Diviney and Michelle Law – to flip the script and speak of their conditions as superpowers, as expertise they should be charging money for.

She opened by noting that we’re living in an attention economy, but it’s unevenly distributed: people with disability and chronic illness are exposed to things they have to attend even if they don’t want to.

Murphy then asked each panellist to share their ‘big idea’, their tip for able-bodied people.

First up, award-winning writer and disability activist El Gibbs proposed Disability Inc: an organisation filled with disability specialists – ie people with disabilities – to advise governments, instead of consultants who have no idea what they’re talking about, such as KPMG and the other Big Four management consultancies. Gibbs would like to get rid of these ‘non-disabled leeches’.

‘Nothing about us without us is more than a slogan on a t-shirt,’ she said. ‘It’s now time for the disabled to fix things and take charge.’

Murphy then offered her elevator pitch for why disabled and terminally ill people need to take charge: ‘The world has a noise problem and deaf people are the only people who can solve it. Our bodies recoil with even the smallest unwanted ambient noises. Deaf people know that unwanted noise can be harmful.’

She spoke of ‘DeafSpace design’, an approach to architecture informed by the ways in which deaf people live and inhabit space, which was formally codified at Washington’s at Gallaudet University in 2005.

DeafSpace design constructs spaces that feel welcome and safe, and create better communications for everyone. It addresses five major ‘touch points’ between deaf experience and the built environment: space and proximity; sensory reach; mobility and proximity; light and colour; acoustics.

Murphy spoke of its qualities, such as ‘layers of light’, which are ideal for seeing sign language, and are achieved by windows and skylights, which create calm light which facilitates conversation. And patterns called ‘soft intersection’ – curved walls – which eradicate sharp corners.

Hannah Diviney talked about the change.org petition she created in 2020 calling for Disney to create a disability Disney Princess. (Disney finally responded in August 2022, acknowledging the importance of Diviney’s request for a story about her in the Australian Women’s Weekly.)

Born three months early, Diviney has Cerebral Palsy to show for it. She said she was told she wouldn’t talk – but now she can’t shut up. When she was four she learned that words were her superpower.

She said her mum told her the pen was mightier than the sword – and she knew that her pen had to be mightier than Excalibur to cut through all this other stuff, ie her disability.

She’s now in the process of writing her first book. Diviney thinks accessibility is important – but she’s more focused on increasing the representation of disabled people in the entertainment industry, in books, tv, film, as both creators and characters.

She also founded Krazy Kosci Klimb for people with disabilities to climb Mt Kosciuszko, Australia’s highest peak. It’s the first event of its kind in the world.

‘My Kosci Klimb raised over $1.9 million, my petition for a disabled Disney Princess got just over 60,000 signatures.’

Diviney said she’s an expert on making people uncomfortable. One of her favourite things in life is ‘to work out how to get into places and parties she’s not invited to. Not really parties, but places we’re not expected to be in.’

‘Being constantly either looked through or stared at has made me very good at seeing people. We all need you to listen to us as experts – all of us on this stage.’

Michelle Law spoke about the beauty industry. Yes, there are all the body-positive campaigns – but how much has really changed? How much will it take for us to learn the myths we’ve been taught by the beauty industry about what’s acceptable beauty?

‘Being beautiful takes so much hair,’ she said, referring to all the ads featuring people with long flowing glossy hair. ‘What would undo this? Losing all your hair. Developing alopecia, an autoimmune disease which results in hair loss. Bald people should be the ones running the beauty industry, because we can’t lie. All it takes is a strong gust of wind to undo us.’

‘If we ran the beauty industry all school children would have their hair unexpectedly shaved. Bald people will teach you how to find beauty in all sorts of places you never thought to look, like the meal you cooked with friends or how your family all has the same noses.’

Fiona Wright said she had an angrier and more despairing version of her talk, but woke up feeling hopeful following the federal election (which brought a Labor Party coalition to power) – she’s aware it’s probably misplaced – so she had to change her speech a little bit.

‘If you just funded the arts properly,’ Wright said, ‘you’d solve the problem.’ Because so many artists live with disability and chronic illness.

‘One of my greatest gifts is to walk into a room and go Oh look, an elephant! Then suddenly realise that everyone else has been assiduously avoiding said elephant.’

Recently diagnosed with Autism Spectrum Disorder, it still makes Wright uncomfortable to frame her disability as an ability or a super power.

Her diagnostic conversation went like this: notices details, connects disparate ideas without trying, loses herself down rabbit holes of research, loves research. These are brilliant characteristics for a writer – and they are also characteristics of autism.

Wright’s spent her entire life watching and listening to people, and watching and limiting and suppressing herself. Working out what she can and can’t say.

‘When I say ‘constantly’, of course I mean it literally. I’m autistic.’

‘The adjustments needed come from your side not our side,’ she said to the audience.

‘When I’ve spent my whole life trying to make you feel comfortable, it’s time you tried to make us comfortable. What it all comes down to is empathy. Autistic people do have empathy. Our empathy just doesn’t look like neurotypical empathy. So neurotypical people just need to work harder to extend their empathy to understand it.’

Murphy closed by asking each writer to say a few words about: When is attention beneficial? When is it taxing? Have people paid attention to you in ways you’ve wanted them to?

Diviney: ‘Good attention is when I get to control it.’ Being stared at and people underestimating what she’s capable of is taxing.

‘People need to start thinking about disabled people being allowed to be ordinary – disabled teachers, florists, doctors.’

Law: ‘You become really good at reading people and making them comfortable, which is beneficial as an artist.’ She was sick of constantly coming out as a bald person, so she made Homecoming Queens (her tv series based on her experience of alopecia) to put it out there.

Wright: Working with her disability dog made her disability fully visible. She noted the very different responses you get when you’ve marked yourself as ‘other’. The moment you use the word disabled in a request, they immediately treat her as incompetent. The mad woman in attic.

The medical community has been slow to understand that autism presents very differently in women than in men. Hence the average age of diagnosis for an autistic woman is 36. For a man it’s 6. Wright was diagnosed at 36. One benefit of her autism diagnosis is that it gave her a framework to understand her life from a point of view where she’s not to blame.

Diviney: The rise of Zoom during the pandemic makes it possible for her personality, brain, humour, to be the first thing people meet.

Law said one good surprise of her alopecia was meeting other chronically ill people in the arts.

These writers were awesome! Read their writing, follow their work. They’re changing the world.

Next up, some thoughts on Sally Rooney’s Beautiful World, Where Are You and Sheila Heti’s Pure Colour.