Hannah Diviney on What Life Is Really Like With a Disability

I’m talking about Barbie, the movie, with Hannah Diviney. “I felt relieved because the whole time I was looking at the line-up of Barbies going, ‘Come on, come on, come on… there's got to be one in here somewhere.’ Often, when people talk about inclusion and want to show that they have diverse characters, they forget about disability. It was quite a relief to see that they'd included a Barbie who had a disability.” But – because there’s often a ‘but’ when it comes to diversity and inclusion – “I wish that she'd been given the opportunity to have a bigger role to play, rather than just ticking the box. At the same time, I'm grateful that the box was ticked because there would've been a time not that long ago, when it wasn't.” It feels like box ticking isn’t enough anymore – it’s never been enough – and we need bigger boxes.

Hannah is what Gen Z would call ‘a multi-hyphenate’, which essentially means, you do a lot of different things. For Hannah, her professions range from acting (she starred as Sarah in the SBS comedy-drama TV series Latecomers which dives into the lives of Frank and Sarah who have cerebral palsy and after seeing their care workers hook up at a bar, decide to explore their own relationships with sex, and each other). She was the first disabled person in Australia to star in a sex scene. She’s launched a global campaign encouraging Disney Studios to create a disabled Disney princess. She’s the editor-in-chief of start-up media company Missing Perspectives, a MECCA M-POWER partner that strives to share the perspectives of women which often go unheard. She was a finalist in the 2022 Young Australian of The Year Awards. I’m not finished – there’s more. Hannah has just written her first non-fiction book, a memoir entitled I’ll Let Myself In. At just 23-years-old, she’s only just getting started.

As a little girl, Hannah loved the stage. It was the only place where she felt like she could control how people reacted to her. Because people have always reacted to Hannah, and their reactions are entirely out of her control. “I was a typical drama kid,” she reflects. “I could generally be found in the choir, in the drama group, on or near a stage most of the time at school.” On stage, and in life, she discovered that she could make people laugh. “Something that I've really developed as both a defence mechanism and a coping strategy, is a sense of humour about my disability.” The stage gave her a platform from which to disarm people with humour. “I wanted them to reconsider their perception of me. I also really enjoyed the fact that most people wouldn't expect to see a disabled kid on stage. If they did, they'd expect it to be a pity or inspiration role. I take pride in the fact that I now get to do this for a living.”

In her memoir, I’ll Let Myself In, which is exceptionally honest, Hannah writes about the childhood memories that have never left her. The parties she wasn’t invited to. The boys who asked her out as a cruel joke. The times she ate lunch alone. “Across my schooling experience, I didn't really have a period of time that offsets those memories. I didn't have a sweet spot… that didn’t come until well after I graduated from university.” Over the years, there has been lots of therapy. And then her book, which is so unashamedly raw and vulnerable, that even as a reader, you feel the freedom that must come with speaking your truth. Hannah writes it all down, holding nothing back.

Given she has wanted to be an author from the age of four, the book is a dream come true – only it’s different to what she pictured. She always imagined she’d start by writing a fiction book. “I never expected to write the book I have,” she says. For a long time, she didn't want to write about her lived experience. “I was hoping that there'd be a nice, long, healthy highway of distance between me and all of these experiences. I thought I'd be reflecting on them from a much more settled and solid place, whereas I'm still in a very formative mode at the moment.” At 23, Hannah has experienced so much more than most girls in their early 20s. “The months that I spent writing this book were like going to therapy every day. There were times where I would literally have realisations about things as I was typing them out on the page. I'll have no secrets left after everyone reads this, but at the same time, there is power in owning your story.”

Her book has been met with incredible praise. By Zoë Foster Blake, who wrote: “Hannah is here to change the world. Let's get out of her way”. And by Grace Tame, who describes it as “Brilliant, bright, defiant, moving, contagious. Hannah's flame leaps from the page straight into your soul. May it spread like a brushfire. This book is the proof point that disability does not mean deficit.” It’s a book that will wholeheartedly change your perspective. It’ll make you question everything you thought you knew about what it’s like to live with a disability. More than anything, it’s a book that will change lives. “My life would have been exponentially different if I had my book to read,” says Hannah.

Hannah was born prematurely at 27.5 weeks (to put it into context, the average length of human gestation 40 weeks). In the days afterwards, Hannah’s parents were informed their baby girl had cerebral palsy. “The fact that I'm here, and the fact that any of us make it healthily into the world, is something to be acknowledged because having a baby is not necessarily an easy process. It doesn't always go according to plan.” In her book, Hannah felt it was important to honour the life choices that her Mum and Dad made. “I'm very lucky that their immediate attitude after crying for 24 hours was ‘Okay, so how do we do this? How do we give our daughter the best life possible?’. Because that's not a given – it’s not what everyone always gets.” Her parents were told Hannah would never walk, talk or feed herself. “Well, clearly by virtue of us having this conversation, that didn't come to pass. There's no specific reason why that happened. It's not that my parents did something that other parents don't do. It's purely just luck and circumstance. I am well aware that it could have gone very differently for me, and for whatever reason, it didn't. I now have a voice, and I feel compelled to use that as much as I can.”

Cerebral palsy is a group of disorders that affect movement and muscle tone or posture. “It’s a physical disability that affects a person's gross and fine motor skills. So, in non-medical English, that means people with CP can have trouble with everything from walking and balancing to being able to hold a knife and fork properly or play a musical instrument. They can have trouble with speech, breathing, swallowing, all that kind of stuff.” What some people don’t understand is that there is a wide spectrum of cerebral palsy and no two cases are the same. There are five major types of cerebral palsy: spastic, ataxic, athetoid, hypotonic, and mixed type. The type of movement issues an individual with cerebral palsy experiences can depend on how severely their brain injury has affected their muscle tone.

“Down one end of the spectrum, you have people who are affected maybe on one side of their body, so they might walk slightly lopsided or have a limp or have one hand that is slightly more claw-like or gnarled than the other. That's called spastic hemiplegia cerebral palsy. Then you've got people like me who kind of sit in the middle, who have what's called spastic diplegic cerebral palsy, where two limbs are more affected than the other. In my case, it’s my legs. But I also didn't get away with having completely unaffected arms either. For me, that means I can't cut up food on my own, or if I hand write, it's going to be messy and people aren't going to be able to read it,” says Hannah. At the other end, she explains, there are people who cannot do anything for themselves other than breathe and swallow. Cerebral palsy isn’t always diagnosed at birth. It’s only when babies don’t hit key developmental milestones – turning over, sitting up, walking, talking – that doctors will do further testing.

Day-to-day, Hannah experiences painful tightness in her body. “Spasticity is a never-ending untriggered tightness that, for me, exists a lot in my lower region. Even right now, as we're sitting here having this conversation, I can feel my muscles are tight. If I go to a physio, they’ll ask ‘what hurts’? It's much faster to tell you what doesn't hurt, because honestly, the baseline is pain. I don't know any different.”

When you live with chronic pain, you need to keep your mental health in check. For Hannah, writing about her own mental health was the hardest part of the writing process. “If I hadn't been so honest, it wouldn't have felt like I was telling the truth. It would've felt like I was presenting some sort of sanitised version of my life. And as difficult as it is to read, or as traumatic as it has been to go through those things, it's important that that stuff doesn't exist in silence.” In Hannah’s book, you step into her shoes and experience both the blinding brightness and the devastating darkness. You read what it’s like to live with cerebral palsy – a condition without a cure. “Cerebral palsy doesn't go anywhere. I need help to get out of bed, I need help to go to the bathroom, I need help to get dressed, to prepare food. I can eat it on my own, but it needs to be cut up.” As a child, Hannah spent her days faced with things she couldn’t do. There were roadblocks at every turn. “My childhood was a lot of small realisations of things I couldn't do, all of which made me feel less equal. I kept looking for people who looked like me to figure out what the alternatives were.” Yet in books, and on screens, no one looked like her. It made her even more determined to change the narrative for future generations.

Hannah says she stopped being a “nice disabled girl” a long time ago. “Nice disabled people are probably people who don't make a fuss. We don't demand better. We don't speak up if something is wrong. We are polite, we are deferential, we are always accommodating and never ask for too much because we take up a lot of space,” she says. Despite the challenges, she remains hopeful. “We are making strides. The fact that there are people like me and Dylan Alcott and Chloe Hayden – all of these amazing, wonderful disabled and neurodivergent humans out there who are pushing and changing things – is an indication that the narrative is changing, but we still have a long way to go.”

In I’ll Let Myself In, Hannah speaks candidly about the heart-wrenching fear that she won’t find love. “I think if you say something out loud, you take the shame of it away,” she says. “It's like taking the poison out of a snake bite. While it's scary to admit to the world that you're terrified of ending up alone, hopefully in doing that, you also create a conversation around why we feel that way.” She says expressing her desires shocks people. “There's a lot of shock and surprise about me or someone like me wanting those things. People's next thought is that the person I’d date would also be disabled - that happens a lot.”

In the opening chapter of her book, Hannah dives straight into the moment that she became the first disabled person in Australia to star in a sex scene when she starred as Sarah in the TV series Latecomers. “Well, that was something that I never saw coming,” she says. “Acting didn't seem like a particularly accessible world to me, let alone doing something like that – also disability, desire, sexuality, and intimacy are hardly ever in the same sentence. On the one hand, while I'm really proud to have that moment and to know that for the rest of time, I will be able to tell people that, ‘Hey, I was the first person to do this,’ but it’s also kind of sad and confusing that it's taken this long,’ she says.

Hannah has many female role models in her life – her mother, her sisters, her friends, her colleagues. “I've had some wonderful women who have lifted me up, women who have shaped the way I advocate. People like Carly Findlay, Alice Wong and Amani Barber. There are so many people, whether it be people I know through Missing Perspectives or people I've been lucky enough to meet, who have become mentors or who have become people that cheer me on and celebrate my success. The power of girlhood and womanhood inspires me, especially right now with the Women's World Cup and with Barbie. It's a really powerful time to be a young woman. Anything I can do to make things better for the women around me and for the women behind me, is something I'm going to try and do.”

For more information on Hannah, go to hannahdiviney.com
Follow Hannah on Instagram @hannahthewildflower
Purchase 'I’ll Let Myself In' here