Review by Samantha Connor
Edited by Robyn Cadwallader
George Orwell once famously said, ‘Autobiography is only to be trusted when it reveals something disgraceful’. It’s why I read Diving into Glass by Caro Llewellyn. Who wouldn’t want to read a book that describes how the daughter of one of Australia’s most revered founders of the disability rights movement planned to set her crippled father on fire?
I wasn’t disappointed. But not for the reasons you might expect.
It took Caro Llewellyn fifteen years to muster the courage to write this book — I read it in one sitting, gulping it down like a lavish Christmas dinner. And if some parts of this tale are exceptionally raw in its often-brutal candour, the writing is all the more hard-hitting for it.
There is power in truth telling, no matter whose truth it is.
Caro wrote this book from the perspective of a disabled woman — like me, she has a degenerative disability.
She’s also written it from the perspective of a daughter of a man with polio and high support needs, fifty years ago. Caro’s story includes her recollections about her resentful, embittered mother, who was caring for her husband in a time when there were wildly different societal attitudes and almost no disability support. That can be a hard perspective to understand, unless you’ve been exposed to the attitudes of those times. And really, this is not just a book about disability, life, parenting — it’s the story of any child with high achieving parents and an ugly divorce.
The only difference is that this story is told through the lens of a broken child with a talented mother who never wanted to be just a carer, and a disabled father determined to hold onto dignity and control at all costs.
It’s the story of any girl who lived through an era where gender roles determined that men worked and women were expected to care until they dropped. In her mother’s case, that meant being a nurse, then mother, then caregiver. Until she broke.
None of this story is new. That is why these stories have to be told. Especially right now, when we are looking down the barrel at austerity measures that might see an end to the disability care and support we fought so hard to win via the National Disability Insurance Scheme.
This book is challenging for any disabled person to read. It’s also important for any disabled person to read, including those born into a better world, those who are not aware of Australia’s shameful disabled history.
A disability rights response to narratives around burden, resentment and ableism shouldn’t be historical revisionism. It should be contextual recognition of where we’ve come from, where the disability rights movement is now and how far we have yet to go.
Most importantly, it should include all the voices. It’s a shame Richard Llewellyn, Caro’s father, was too busy living, working and achieving to write his own book, but not everyone is destined to become a writer.
Other voices that should be heard include Kate Llewellyn, Richard’s former wife, a brilliant poet and writer, and Caro Llewellyn, who wrote this candid book with such skill and raw honesty that it’s hard not to say the same about her.
Caro Llewellyn has a magnificent sense of humour. She probably didn’t inherit it from her dad. Her confession that she was determined to set fire to her father’s wheelchair to drive him out of it, prompted by a classmate’s story about a man with a spinal cord injury who was miraculously cured when his house caught fire, is in equal parts horrifying and hilarious.
I hope Richard Llewellyn saw the humour. Pragmatically, he hid the matches. It would be unlikely that he wasn’t concerned by Caro’s conviction that, despite all evidence to the contrary, he was faking his disability.
At the time, Caro was only eight years old and had been subjected to a series of traumatic events during her parents’ bitter marriage breakup, including her mother’s unraveling mental health.
Caro describes how, when she was about five years old, her father commenced an affair with his temporary caregiver. Her mother said she was relieved, that the affair was a good thing. The young woman, who later became Caro’s stepmother, slept in her parents’ bed, while her mother moved onto a single mattress on the floor of the art gallery out the back. In the morning, before the gallery opened, she would haul the mattress out into the woodshed.
On a later occasion, Kate Llewellyn cooked dinner for the family, setting the table with care and cooking a lamb roast. Caro describes her sense of rising tension, watching her mother’s demeanour, knowing something was about to go wrong. ‘Shimmering expectation,’ she calls it. Any child who is the product of domestic violence knows that feeling — the feeling of walking on eggshells — when you know something just isn’t right.
She tells how she started counting ivy leaves on the wallpaper above her brother’s head to calm herself, and the ensuing scene that resulted in police attendance, her mother sweeping the crockery from the table and stabbing Richard’s wheelchair tray with the carving knife. She then took the knife to a life-sized portrait of Richard that hung behind him and slashed it to ribbons.
It must have been challenging to write about this incident, principally because her mother is still alive. No wonder it took fifteen years to publish.
Caro is honest about her own anxiety, confusion and resentment. It would be unusual for a child not to be profoundly psychologically affected by her home environment and events like the one described above, especially given that her father and stepmother-to-be moved out immediately afterward.
She’s equally honest about her father’s faults, including his perfectionism, and Kate’s mercurial personality and bursts of rage.
Caro’s book never explicitly mentions mental health conditions, but the impact of trauma is broadly described throughout the book — including the revelation that she suddenly decided her father was faking his disability.
There’s a paragraph in the book that reads as follows:
I…pulled out a large black and white photograph of me about eight years old.
The image hit me like a blow to the chest. I clipped it with the pegs of a plastic coat hanger and looked at it long and hard. It was a photograph obviously taken by a professional photographer. In it, I am holding a flame shaped petal up to my chin. The ‘fuck you’ look in my eyes is chilling.
My mother was shocked when I showed her the photograph a few months later.
‘But that was such a happy day,’ she said in disbelief. ‘We were on a picnic.’
It was a picture of deep unhappiness and my mother could see it as clearly as I did.
Once I said to her that I didn’t think I had a very happy childhood. ‘But darling,’ she said, ‘you had French wallpaper in your bedroom.’
It’s a portrait of the deeply unhappy child who had decided that her hard-working father was faking his disability.
I have a photograph of myself, at a similar age. It was taken by the man who sexually abused me.
He told me to smile.
I can recognise trauma in a child.
It was a happy day, that day. We were on our way to a picnic.
We were taught, we children of that era, to keep on smiling, no matter what. To keep up appearances. To carry on because hard work would win the day.
I would hope that children these days have better access to mental health supports, but I know from experience that’s not necessarily true.
Confessing ableism, resentment and sometimes revulsion is an incredibly difficult thing. It’s almost as hard to read, if you’re disabled.
What we dependent people fear the most is being a burden. There is nothing worse than seeing the resignation on the look of the person caring for you when you ask them to do something, when you know they are already exhausted.
It is devastating seeing the look of embarrassment on your child’s face when a stranger stare at you. It’s awful knowing that you are the secondary cause of anxiety, exhaustion, guilt and shame — not because of your own actions, but because of lack of support, discrimination, ableism and stigma.
The fear of being a burden is the reason most often cited by people who want to access euthanasia, studies show. Caro is candid when she talks about her own ableism. The family’s treatment of their father was shameful, she admits.
She tells a story about wanting to go shopping without her father so that she could buy her new school uniform for the first year of high school, ‘So it will be quicker,’ she tells her stepmother, who is disappointed in her. Caro knew that if she was seen by her classmates, she’d be ‘branded as a freak’. Every twelve-year-old wants to avoid embarrassment when among their peers.
They went to the shops alone and she ran straight into the bedroom upon her return to show her new clothes to her father — ‘Trying to make up for my cruelty’, she describes it. But when she opened the door, she started screaming. Her father was covered in ants, attracted by a wound on his big toe. They were eating him alive.
She describes another incident when she was ten years and her father almost drowned because she was ‘not watching’ him in the pool.
What most people won’t understand is that this is not the story of burden, but of the impact of guilt caused by ableism, the story of a failure of our country to support disabled people well. It is also Caro’s lived experience as the daughter of a disabled man during a particular time in history when this was the norm.
The book takes on the tone of confession when she talks about these events — but they were no more Caro’s fault than they were Richard’s.
Last year, just before the federal election, I made a public appearance on ABC’s The Drum. The host, Ellen Fanning, took me over to see the set design for the ‘budget special’ the next night. There was a power cord on the floor and she casually motioned to me to note that it was there.
It was the kind of casualness that only comes with proximity to disability. Most people are weird about disabled people. Awkward. I asked her if she had a family member with a disability. If she was surprised, she didn’t show it.
My dad was a quadriplegic, she said, pulling a photograph out of her wallet. He died when she was two, in 1969, of a brain haemorrhage. A few months later, she tweeted that her father had been saving hard to buy an electric wheelchair when he died — a few months later, her mother used the savings to pay for his funeral.
Things were different fifty years ago. They are, truth be told, not too much different now.
I know at least half a dozen physically disabled men who married nurses or support workers in order to stay out of an institution. Some of them were even in love.
Unless disabled people are alongside non-disabled people in every part of life, school and work and play, stigma and exclusion will continue. We must ensure segregation and isolation ends, that institutions close. If we do not, the impacts of shame and stigma will continue to shape our lives and the lives of our families.
Unless disabled people have enough disability care and support to meet their needs and help them be who they are, women will be forced into eternal unpaid caring roles. More than two thirds of Australian primary carers are women, predominantly mothers, daughters or wives.
And, most relevant of all, unless we start listening to all the stories and the lessons of the past, the future is doomed to repeat itself — that includes the impact of enforcing a narrative of rugged individualism and ‘bootstraps’ hard work as a valid alternative to disability care and support.
It also includes the story of polio and the importance of vaccination. A national immunisation effort had been rolled out when Richard Llewellyn was nineteen, but he was considered to be past the danger years because polio predominantly affected children. Years later, Australia has completely eradicated polio, but there are still 400,000 Australians who live with residual effects.
Not enough has changed, but enough has changed that Caro Llewellyn, a disabled woman, won’t live in exactly the same ableist, inaccessible world her father did.
He was one of the people who saw to that.
I am grateful to Kate Llewellyn for living with such reckless abandon that she dared to love, and leave, a disabled man in an iron lung. And for her commitment to all manner of things, including the creation of good poetry and talented children.
I’m grateful to Richard Llewellyn for his extensive work in the disability rights movement and for paving the way for others to make change.
And equally, I am grateful to his daughter, Caro Llewellyn, for telling her own story in Diving into Glass — not Richard’s. We all have our stories to tell.
The only thing that is missing is Richard’s own story, told from his perspective. I am hopeful that in the future there will be more disabled Australians, including and especially those who do not hold great privilege, who will be able to narrate their own stories.
Autobiography is only to be trusted when it reveals something disgraceful, Orwell said. This award-winning book rings with the authenticity and legitimacy of one that does that, and so much more.
Diving into Glass
Penguin Books Australia, 2019
Samantha Connor is a disabled woman living on Ballardong country in Western Australia. She has a strong track record as a disability and human rights advocate. She is President of People With Diasability Australia (PWDA), member of the Ministerial Advisory Council on Disability in WA, and board member of Physical Disability Australia. Samantha is a current board member of Autism Self Advocacy Network AUNZ — she is autistic, has ADHD and muscular dystrophy and uses a wheelchair for mobility.
Samantha is a campaigner and has been actively involved in many campaigns, including the successful campaign for a disability Royal Commission. She has also been heavily involved in actively working for a better NDIS — as a founder and administrator of the online group NDIS Grassroots Discussion, she supports 48,500 people with disability and their families to navigate a scheme that is not working well. She works only in roles that will benefit disabled people and currently lectures part time at two universities in human rights, activism and disability discrimination in Human Resources.
She believes that disabled people have the right to be unapologetic in taking up space in the world and in the disability rights mantra, ‘Nothing About Us Without Us’. You can talk to Samantha @criprights on Twitter.