Content warning: disability slurs, allusion to violence toward disabled people.
The below piece was written and then edited for The Stella Prize website, as part of their response to the 2020 shortlisted books. It was never published there.
Caro Llewellyn’s Diving into Glass (Penguin, April 2019) was a daring choice by the Stella Prize judges. The book took her more than fifteen years to write, and she told me it was very challenging to write such a personal story.
Part memoir, part biography of her late father, Richard Llewellyn AM, the book strongly focuses on disability – Richard’s disability as a result of acquiring Polio when he was 20, and Caro’s own diagnosis of Multiple Sclerosis (MS) when she was 44. The book also details the minutiae of her often difficult early life growing up in Adelaide, various romantic relationships, the birth of her son when she was 23 and becoming a single mother at 24, and her career. Caro also writes about her mother, writer Kate Lewellyn, who at times, had violent outbursts. Her parents met when her Dad was in hospital in an iron lung – her Mum nursed him. They married against family members’ wishes, and separated 12 years later.
Caro’s career has been illustrious – working as a band booker, in publishing houses, as the director of four world class writers festivals and and most recently at the Melbourne museum. Though it hasn’t been without struggle – she experienced sexual harassment as a cafe worker, workplace bullying at an international writers festival, and loneliness, and perhaps regret, as a result of leaving her son in Australia while she worked overseas. She also glossed over the three previous books she‘s written, a detail I felt was rushed.
I write this piece as a disabled woman, a writer, a writer passionate about disability inclusion and representation in literature, and also an advocate for accessibility in bookstores, publishing houses, and writers festivals.
Caro and my experiences and acceptance of disability are very different. I was born with my disability (a rare, severe skin condition), although didn’t identify as disabled until my mid 20s. It took a lot of practice to get proud, especially because so many people believe I can’t possibly be proud looking like I do, and tell me I’m unworthy of love, happiness and equality – through overt discrimination, exclusion and subtle microaggressions. I imagine this was the same for Richard, and indeed Caro.
I am passionate about increased positive representation of disability in literature and media. Tragic stories around disability are the default, and I strive to change that in my work.I think it’s excellent that a large mainstream publisher published a disability memoir and biography, and that it’s been shortlisted for The Stella Prize. I hope that Diving Into Glass paves the way for many other types of disability stories to be published and win awards.
When she was diagnosed with MS, Caro experienced anger and shame. In a brief written interview between Caro and I (below), she confirmed something she wrote in the book.
“Dad always told us that he was our fall guy, so we could live life safe in the knowledge nothing would physically harm us, so imagine my surprise when a neurologist told me I should move into a house with no steps!”
“There are only two types of people in this world. The disabled and the yet to be disabled.”
At a recent feminist writers panel event that I was able to attend unexpectedly, I heard Caro say that she has a lot to be thankful for since her MS diagnosis. She said,
“I’m not going to write that book, because that would be boring. No one wants to read that happy story”.
But many of us want to read stories of hope.
Not in an inspiration porn way, as Stella Young talked about, but in a way that shows us what’s possible. The story of disability as a tragedy is hard to escape, and it shapes how we are all seen, keeping expectations of disabled people low.
(That night, Caro also told host Jamila Rizvi and the packed audience that she didn’t see Diving Into Glass as a disability memoir, nor only for a disabled audience – “it’s for everybody”, she said.)
Like Caro, Richard Llewellyn also had an incredible career. He was clever and adaptable, and overcame immense discrimination. Before he contracted polio and then became disabled, he was sailor. And as a disabled man, he worked hard to provide for his family – making table mats and coasters, buying a mixed business store and an art gallery with his first wife, and then working in the Public Service – at first as a volunteer to prove himself, and then with pay but not equal rights as non disabled people, as a disability advisor to South Australian Premier John Bannon, and as a fierce disability activist. Since his death, a fund for Deaf and disabled artists has been established in his name.
While Caro wrote at length about her father’s disability and the barriers he faced – including unbelievable discrimination, I felt she also skimmed over his major achievements.
“Future generations of Australians have my father, and Becky in the wings making his work possible, to thank for for accessible public buildings, taxis that can transport people in wheelchairs, footpaths with ramps and accessible toilets. His tireless campaigning made it impossible not to hire someone with a disability if they were the best candidate for the job”.
I only wish his achievements – personally, and the way he made Australia and the world a better place could have been written about without being surrounded so much shame and stigma from his daughter. Becky Llewellyn, his second wife, wrote a 12 page detailed, compassionate and assertive submission to the Productivity Commission in 2011, outlining his personal achievements, career and the many improvements he made for disabled people.
From Becky’s submission:
“Richard also fathered 4 children, travelled interstate and overseas, invented key disability equipment and challenged conventional welfare blocks in Adelaide, then nationally, to listen to the voices of people with disabilities. He believed in self‐interest but also in creating a society without barriers so that people could make choices to participate as they wished. He was an advocate for raised expectations of people with disabilities but with structural and systemic supports to enable this citizenship to flourish.
He began his wider role of encouraging more people to be advocates by mobilizing people in the late 1970s in a Club for Physically Handicapped. It met alternately at the Home for Incurables or Regency Park Centre for Crippled Children. People came together to learn how to be more active, participate and run committees. In the process, this Club started a movement that created many national leaders from SA in this field. Individuals count and it is in all of our interests that people with disabilities, not those of us who work with, live with and love them, push the agendas forward. Disability led initiatives, which tap the principle of self‐interest, are the most efficient market mechanism to ensure progress happens. People who are living this experience have the passion, commitment, black humour and crap‐detecting instincts to give over and above the normal because they are stakeholders in a larger vision of progress.“
In my work, I’ve been vocal about how people write about disability – especially the power imbalance that comes with non disabled storytellers. I am passionate about disabled people writing on disability – and so I’m grateful for this very writing opportunity, and also appreciative of Astrid Edwards’ review of Diving Into Glass (Astrid also has MS). And I also constantly question whose story is it to tell? The themes of people’s stories about disability – especially of a family member – are often burden, grief and shame. I believe this narrative not only impacts on the disabled person being written about, but the disability community as a whole. It’s hard to find pride when people show little respect and value for you.
But it becomes tricky when a disabled person writes about their own ableism towards others. On one hand, Caro’s feelings of abandonment and the shame she felt around her father’s disability are valid parts of her story. On the other hand, her father is dead – with no right of reply. While she writes about the discrimination and humiliation he faces by the public, his workplace and also family, she also writes about the shame and resentment she harboured towards her father, often very ableist.
While Caro has acquired her disability just over a decade ago, and the feelings she had towards her father were when she was much younger, she still wrote about her Dad with an ableist and shameful lens. This goes to show even disabled people aren’t always respectful when writing disability.
Caro wrote a lot about the shame and resentment she harboured for her father and his disability (which she also talked about on ABC Conversations) – that she was embarrassed when he came to parent teacher nights, she almost ridiculed him for claiming the success of growing tomatoes in a garden – even though he didn’t do any of the physical work, that she believed he tricked her mother into a relationship for his own freedom. She also used the word “cripple“, and laughed at the memory of her young son giving Richard the dehumanising nickname of “Chair”, stating “My father was his wheelchair.”
There was one story in the book that horrified me, especially in light of the current Disability Royal Commission. She wrote,
“Despite all the proof to the contrary – the wheelchair, the lifting device by the bed, despite not once being picked up by my father, I didn’t really believe he couldn’t walk, I thought that he was just being lazy, that he simply liked all the attention of us doing everything for him… I was eight when I came to the firm conclusion that my father wasn’t a cripple, he was a fake”. “I decided the only thing to be done was to set my father on fire.”
Caro believed setting her Dad on fire would make him walk, because she had heard a story about a man in a wheelchair who had been miraculously cured after his house caught on fire.
She told Richard her plan, and wrote that Richard was convinced she would proceed with this idea, so he asked Becky to hide the matches.
“Meanwhile I searched for matches, dreaming of roaring heat so hot my father would have no choice but that my father would walk from that damn chair.” , she continued.
She read this passage out at Byron Writers Festival, when we both spoke at a panel about disability memoir .She described it as “a strange way of me showing my love for my father”, and the audience laughed, awkwardly. I also laughed awkwardly before reading a piece out about how I stopped apologising about my own disability, surprised at what I’d just heard.
In my interview, I asked Caro how she is involved in the disability rights movement – given her Dad’s work. She told me,
“I’ve lived with disability all my life – first my father’s; now my own. I guess you could say I have been championing disability rights since the day I was born.”
I didn’t get that impression from Diving Into Glass. Only a few times did she write about her regret over how she viewed her father’s disability, and at times, she was very othering towards disabled people, and showed a lot of internalised ableism that I hope she works through.
I was challenged by reading this book and in writing this piece. It surprised me that a book like this would be shortlisted for a prestigious award, especially in a time when own voices are prioritised. Yes, Caro told her own story, but in doing so, she cast her father as a burden, manipulative and unable. Disabled does not mean unable, especially with the right supports and love around disabled people. (I acknowledge that many of the barriers Richard faced were due to being in a different era, where disabled people did not have access to equal rights and adequate support.)
However, I am grateful that I learnt so much about Richard Llewellyn AM through reading this book. I went on to research his work further.
When I encounter ableism, I often return to the work of proud disabled people, to remind me that I am worthy – that all disabled people are. The late writer, disability activist and comedian Stella Young had a tattoo saying “You get proud by practicing” on her arm – the title of Laura Hershey’s famous poem on disability pride.
“Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
I hope Caro can read this poem, and the work of other disabled people, and become proud too.
I did a written interview with Caro as part of the research for this piece – here’s our Q&A. My questions are in bold and Caro’s answers are below.
1. Diving into Glass is your fourth book. It’s your most personal – a memoir and biography of your father. How did it feel to write about such personal stories?
Caro: “It was very challenging to write such a personal story – hence the time (15+ years) to write the book. I had to process and do a lot of self-reflection in order to make sense of what was happening to me and it was very challenging for me to speak my truth, tell my story!”
2. I understand that even though you grew up with a disabled Dad, you struggled to come to terms with your MS, describing your Dad as your “fall guy” – you assumed he took the hit of tragedy for your family. (Note – I don’t believe disability is a tragedy, or means for a tragic life.) Was writing this memoir, and talking with other disabled writers in events (like the panel with Jessica White and I, and also with Jamila Rizvi) helpful for you in processing your grief of acquiring MS?
Caro: “Yes, absolutely. Dad always told us that he was our fall guy, so we could live life safe in the knowledge nothing would physically harm us, so imagine my surprise when a neurologist told me I should move into a house with no steps! Writing the book made me understand my life experiences better and I was able to heft off a lot of shame, which has been very liberating. And, yes, talking with you and Jessica and Jamila has been hugely affirming – to be with such amazing women, living such amazing and inspiring lives has been a great privilege.”
3. Has writing this book (and seeing the reactions to it) changed your views of disability as a tragedy?
Caro: “You are so wonderfully right that disability doesn’t have to mean that you lead a tragic life. Life with a disability might mean it’s different from other people’s daily experiences, but it doesn’t necessarily have to mean it’s sad or helpless or tragic – it’s different. I don’t want to sugar-coat it, life with disability presents challenges. Sadly, the world is simply not yet set up for diversity, but we’re all working on it and it’s getting better all the time. But I think the thing to really celebrate and acknowledge is that there are all sorts of unexpected joys and discoveries. So often when people are walking with me (which means walking slowly) they say, “Wow, this is so nice. I’m forever rushing everywhere. It feels good to slow down. I feel like I can breathe.”
4. One of the biggest privileges I’ve found with writing disability related memoir has been other disabled people writing to share their stories with me – especially how my work has helped them find self-worth and the courage to disclose their disability (to others, and even to themselves). Have you found this too? How do you hold space for their stories, and yours?
Caro: “You’re so right that it’s a great honour and privilege to have people share their personal stories and experiences having read the book or heard my story. It’s the greatest joy to learn that someone has gained insight or hope or learned something that makes their journey easier than mine.”
5. I personally became to identify as disabled when I met and read the work of other disabled people – even though I’ve had a life-long severe skin condition. I realised we experience very similar barriers and discrimination, even though we have different impairments. I cherish disabled writers’ work – it makes me feel less alone – and am so excited to connect with many disabled writers in person and online. What other disabled writers have inspired you?
Caro: ”It’s so wonderful to hear that reading helped you in your journey and enabled you to make connections with others. Seeing the lives of others through a different lens and identifying with them even when the specific details might be different is one of the very best and most important outcomes of literature and reading. Brava to that!”
6. How have you benefited from your Dad’s work in the disability rights movement?
Caro: “People with disabilities are not the only people who benefit from my father’s work – ramps and easy access are also good for parents with prams, the elderly, the injured…. Buildings designed well with access in mind are inclusive to all people and that’s a thing of beauty.“
7. How are you involved in the disability rights movement – through writing, your wider work and personal life?
Caro: “I’ve lived with disability all my life – first my father’s; now my own. I guess you could say I have been championing disability rights since the day I was born.”
8. I think it’s excellent that a large mainstream publisher published a disability memoir, and that it’s been shortlisted for The Stella Prize – well done! What adviceand encouragement do you have for other disabled and chronically ill writers, following the critical acclaim of your book?
“Tell you story as honestly as possible.”
9. You have worked in literary festivals and also publishing, and now have this book out – which touches on your disability, and your Dad’s too. Are you still seeing barriers to the literary industry (festivals and publishing and book events), and what changes have you seen/have you helped make?
Caro: “I have seen terrible oversights at literary events. Once I watched on heartbroken as Toni Morrison had to receive a big prize from a human rights organization off stage where no one could see her, because no-one had thought to organize a ramp for her wheelchair to get on to the stage. There is a lot of training to be done in the industry to make sure it becomes second nature to allow access. Strange thing is, it benefits everyone not just the person with the disability.”
10. What are you plans for future writing?
Caro: “I’m so excited to be almost finished a novel, which I started last year. I figure the memoir took 15-years, so this can be a bit faster! It’s about a woman who returns home after living in New York for many years and wonders where she belongs. Sound familiar….?!”
Caro Llewellyn has created Together Remotely – a virtual writers festival – as a response to COVID-19. Find out more information about Together Remotely here.