It has been a pleasure following the Barbellion Prize race this year. In case you haven’t already seen the news, the winner of the inaugural award is Golem Girl by Riva Lehrer (my review).
It’s not often that my favourite from a literary prize list is also the judges’ pick, so I’m particularly pleased that my prediction came true. The full announcement is here. Here’s what two of the judges had to say:
Assistant Professor of Literature Dr Shahd Alshammari: “Golem Girl is a memoir that is infused with art, life, discrimination, love, self-love, and what it means to be vulnerable. Disability is on every page—and that is the type of literature we need.”
Cat Mitchell, Lecturer and Programme Leader of the Writing and Publishing degree at the University of Derby: “Golem Girl is a powerful and wide-reaching account of a life lived with disability. By interweaving her writing and art, Riva explores queerness, community, society’s fear of difference, and the often problematic representation of disabled bodies in art and medicine.”
Professor Tom Shakespeare FBA, Professor of Disability Research at London School of Hygiene and Tropical Medicine, and an advisor to the Prize, added: “From Pope to Stevenson, Woolf to Plath, writers have lived with illness and disability for centuries. Now here comes exactly the right prize at the right time: disabled writers have been locked down far longer, and deserve far more recognition than they get. The Barbellion Prize deserves to succeed, and Riva Lehrer’s Golem Girl will put it on the map.”
To recap, the other three on the shortlist were:
It’s been quite the whirlwind reading and reviewing all four books as the first two review copies only arrived on the 28th of January. Most of my reviews got bunched up right in the 36 or so hours before the announcement, but I was relieved that I managed to get them all up in advance. The Prize basically has no budget, so when I approached Cat (who used to work in publicity at Penguin) and asked if I and a handful of other bloggers could get involved, I wasn’t sure if it would be a possibility. I was really grateful to the four publishers for being willing to supply review copies. I hope we have helped to get the word out there.
The Barbellion Prize is already accepting entries for the 2021 award (submissions close on 31 October; see the website for more information). On my wish list thus far are two excellent memoirs, Sanctuary by Emily Rapp Black, who has a prosthetic leg and lost her son to Tay-Sachs disease, and A Still Life by Josie George, who lives joyfully with chronic illness.
Other relevant 2021 releases I’m interested in getting hold of are: The Invention of Miracles: language, power, and Alexander Graham Bell’s quest to end deafness by Katie Booth, Places I’ve Taken My Body by Molly McCully Brown, What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller, and Waiting for Superman: One Family’s Struggle to Survive – and Cure – Chronic Fatigue Syndrome by Tracie White.
Have you been inspired to read any of the shortlisted books?
The Barbellion Prize 2020 will be awarded tomorrow “to an author whose work has best represented the experience of chronic illness and/or disability.” (See also my reviews of Golem Girl by Riva Lehrer and Sanatorium by Abi Palmer.)
These two memoirs, though very different outwardly, both draw attention to the practical and emotional challenges of life with disability or a mental illness, and call for compassion from individuals and a commitment to help from governing bodies.
The Fragments of My Father: A memoir of madness, love and being a carer by Sam Mills
One in eight people in the UK cares for an ill or disabled relative. Sam Mills has been a carer for a parent – not once, but twice. The first time was for her mother, who had kidney cancer that spread to her lungs and died one Christmas. A few years later, Mills’s father, Edward, who has paranoid schizophrenia, started having catatonic episodes, as with the incident she opens her memoir on. In 2016, on what would have been her mother’s 70th birthday, Edward locked himself in the toilet of the family home in Surrey. Her brother had to break in with a screwdriver and ambulance staff took him away to a hospital. It wasn’t the first time he’d been institutionalized for a mental health crisis, nor would it be the last. It was always excruciating to decide whether he was better off at home or sectioned on a ward.
Mills darts between past and present as she contrasts her father’s recent condition with earlier points in their family life. She only learned about his diagnosis from her mother when, at age 14, she saw him walk down the stairs naked and then cry when he burned the chips. While schizophrenia can have a genetic element, relatives of a schizophrenic are also more likely to be high achievers. So, although Mills went through a time of suicidal depression as a teenager, meditation got her through and she exhibits more of the positive traits: An author of six books and founder of the small press Dodo Ink, she is creative and driven. Still, being her father’s full-time carer with few breaks often leaves her exhausted and overwhelmed.
The book’s two main points of reference are Leonard Woolf and F. Scott Fitzgerald, who cared for mentally ill wives and had to make difficult choices about their treatment and housing. In a nutshell, Mills concludes that Woolf was a good carer while Fitzgerald was a terrible one. Leonard was excused World War I service due to his nervous exhaustion from being a carer, and he gave up on the idea of children when doctors said that motherhood would be disastrous for Virginia. Virginia herself absolved Leonard in her suicide note, reassuring him that no couple could have been happier and that no one could have looked after her better. Scott, on the other hand, couldn’t cope with Zelda’s unpredictable behaviour – not least because of his own alcoholism – so had her locked up in expensive yet neglectful institutions and censored her work when it came too close to overlapping with his own plots.
The Fragments of My Father brings together a lot of my favourite topics to read about: grief, physical and mental illness, and literary biography. It had already been on my wish list since I first heard about it last year, but I’m glad the Barbellion Prize shortlisting gave me a chance to read it. It helps to have an interest in the Fitzgeralds and Woolfs – though in my case I had read a bit too extensively about them for this strand to feel fully fresh. (I also had a ‘TMI’ response to some revelations about the author’s relationships and sex life.)
Ultimately, I most appreciated the information on being a carer, including the mental burden and the financial and social resources available. (Although there is a government allowance for carers, Mills wasn’t eligible because of her freelance earnings, so she had to apply for Society of Authors grants instead.) With caring so common, especially for women, we need a safety net in place for all whose earnings and relationships will be affected by family duties. I read this with an eye to the future, knowing there’s every possibility that one day I’ll be a carer for a parent(-in-law) or spouse.
Readalikes I have also reviewed:
- Labours of Love: The Crisis of Care by Madeleine Bunting
- All the Lives We Ever Lived: Seeking Solace in Virginia Woolf by Katharine Smyth
“had I ever made a conscious choice? Caring felt like something that was happening to me, as though my father’s illness had been an eruption that had flowed like lava over my life. … I can’t think of any other job where someone defines your role by conferring its title on you, as though they are holding out a mould that you must fill.”
“caring is rarely simple because its nature is not static. It creates routines, crafts the days into set shapes, lulls you into states of false security, and then mutates, slaps you with fresh challenges, leaves you lost just when you feel you have gained wisdom.”
With thanks to Fourth Estate for the free copy for review.
Kika & Me: How one extraordinary guide dog changed my world by Dr Amit Patel with Chris Manby
Dr Patel grew up in Guildford, studied medicine at Cambridge, and specialised in trauma medicine as a junior doctor in London. Diagnosed with keratocornus, which changes the shape of the cornea (it affects 1 in 450), he required first special contact lenses and then a series of cornea transplants. By the time of his eighth transplant, he’d remortgaged his house to pay an American specialist. Meeting and marrying Seema was a time of brightness before, in November 2013, he completely lost his vision within 36 hours. Blindness meant that he could no longer do his job, and constant eye pain and inactivity exacerbated his depression. While white cane and Braille training, plus the Royal National Institute of Blind People’s “Living with Sight Loss” course, started to boost his independence, it was being paired with his guide dog, Kika the Labrador, in 2015 that truly gave Patel his life back.
Trying out guide dogs sounds a little bit like speed dating. The Guide Dogs for the Blind Association (founded in the UK in 1931) warned that Kika was a “Marmite dog,” moody and likely to push boundaries; there was no guarantee she and Patel would get along. But from the start Kika was just right for him. More than once, what seemed like her pure stubbornness – lying on his feet and refusing to move – kept him from dangerous situations, like getting trapped between a busy road and a building site on an unfamiliar route. After a 10-day core skills training course, during which man and dog stayed at a hotel together, Kika was ready to join them at home. In the days to come, she would learn all Patel’s usual routes around their neighbourhood and into the City – with the help of smears of mackerel pâté.
If you’re like me, you’ll be most curious to learn about the nitty-gritty of life for a visually impaired person. I loved hearing about how Patel practiced his Braille letters with an egg container and ping pong balls. Since he went blind, he and his wife have had two children, and with Kika’s help manoeuvring a baby buggy is no problem. Guide dogs are trained to be predictable, e.g., doing their business in the same spot at the same times so it’s much easier to find and clean up. Some dog training tricks also worked for children, like putting a bell on a Labrador or a toddler to know when they wandered off!
Patel has had some unfortunate experiences since he went blind, particularly on the London Underground: teenagers picking him up and spinning him around on a train platform, busy commuters barging past him and Kika on an escalator, and an impatient woman hitting Kika with her handbag. While Patel doesn’t like being negative on social media, he finds that posting video clips of these incidents raises awareness of the challenges VIPs face. Every time he hits a setback, he uses it as an opportunity. For instance, one Diwali he was excited to visit Neasden Temple, only to be dismayed that they wouldn’t allow Kika inside. Since then, he has worked with temples around the world to improve disability services. He is also involved in London’s “Transport for All” work, and advises companies on access issues.
More so than the rest of the shortlist, Kika & Me is illuminating about daily life with a disability and has a campaigning focus. It’s an easy read, and not just for animal lovers. Judging the book by the cover, I might not have picked it up otherwise, so I’m grateful that the Barbellion put it on my radar. I’m deeply impressed by what Patel has achieved and the positive attitude he maintains. (Kika has her own Twitter account! @Kika_GuideDog)
With thanks to Pan Macmillan for the free copy for review.
Next year the Barbellion Prize hopes to award more money, including to all nominated authors. They are accepting submissions for 2021, and are grateful for any Paypal donations via their website (see the page footer). I’ve donated to the cause. Can you help, too?
New this year, the Barbellion Prize will be awarded annually “to an author whose work has best represented the experience of chronic illness and/or disability.” It’s named after W.N.P. Barbellion (the pen name of Bruce Frederick Cummings), the English author of The Journal of a Disappointed Man, which he started writing at 13. A self-taught naturalist, he specialized in lice when he worked for the British Museum’s department of natural history in London. He was rejected for war service in 1915 after a doctor found him to have multiple sclerosis. At that time, the diagnosis was like a death sentence; indeed, Cummings died at age 30 in 1919, though by then he had managed to produce two volumes of memoirs as well as a daughter.
Here’s some more information on the prize criteria from the website: “Eligibility for the prize is predicated on the author’s presentation of life with a long-term chronic illness or disability, whether that be in the form of blindness, MS, cystic fibrosis, dwarfism, or another comparable condition that may substantially define one’s life. Authors – such as those in a carer’s capacity – who themselves are not ill may be considered for the prize if their work is truly exceptional as an articulation of life with illness, but authors who themselves deal personally with illness or disability will take priority in any selection for the prize.”
Especially in the absence of the Wellcome Book Prize, which has been on hiatus since the announcement of the 2019 winner, I’m delighted that there is a new prize with a health slant, particularly one that will lead to greater visibility for disabled writers and their stories. From a longlist of eight, in January the Barbellion Prize judges chose a shortlist of four titles: three memoirs and a work of autofiction. The publishers kindly agreed to send me the shortlist for review. Two have arrived so far (there have been postal delays in the UK, as in many places).
I have already read one of the nominees and will do my best to review the rest before the £1000 prize is awarded on the 12th. The others are:
- Golem Girl by Riva Lehrer – An illustrated memoir by a visual artist born with spina bifida.
- The Fragments of My Father by Sam Mills – A memoir of being a carer for her father, who has paranoid schizophrenia; also includes musings on Leonard Woolf and F. Scott Fitzgerald, who cared for mentally ill wives. I’m currently reading this one.
- Kika & Me by Amit Patel – Patel was a trauma doctor and lost his sight within 36 hours due to a rare condition. He was paired with his guide dog, Kika, in 2015.
Sanatorium by Abi Palmer (2020)
Water is a source of comfort and delight for Abi, the narrator of Sanatorium (whose experiences may or may not be those of the author; always tricky to tell with autofiction). Floating is like dreaming for her – an intermediate state between the solid world where she’s in pain and the prospect of vanishing into the air. In 2017 she spends a few weeks at a sanatorium in Budapest for water therapy; when she returns to London she buys a big inflatable plastic bathtub to keep up the exercises as she tries to wean herself off of opiates.
Abi feels fragile due to a whole host of body issues, some in her past but most continuing into the present: an autoimmune connective tissue disorder, psoriatic arthritis, Crohn’s disease, and sexual assaults. Her knee is most immediately problematic, leading her to use a mobility scooter. As her health waxes and wanes, other people – unable to appreciate any internal or incremental changes – judge her by whether or not she is able to walk well.
The book is in snippets, often of just a paragraph or even one sentence, and cycles through its several strands: Abi’s time in Budapest and how she captures it in an audio diary; ongoing therapy at her London flat, custom-designed for disabled tenants (except “I was the only cripple who could afford it”); the haunted house she grew up in in Surrey; and notes on plus prayers to St. Teresa of Ávila, accompanied by diagrams of a female figure in yoga poses.
Locations are given in small letters in the top corner of the page, apart from for the more dreamlike segments that can’t be pinned down to any one place. For instance, I was reminded of a George Saunders story by the surreal interlude in which Abi imagines Van Gogh’s Starry Night reproduced in the hair on a detached pair of legs mounted on a wall as a work of art.
The different formats and short chunks of prose generally keep the voice from becoming monotonous, though I did wonder if occasional use of the third person (and some more second person) could have been effective, too. Far from a straightforward memoir, the book incorporates passages that are closer to fantasy and poetry, and the visual elements and fertile imagery attest to Palmer’s background as a mixed-media artist.
Sanatorium is a fascinating work – matter-of-fact, playful and sensual – that vividly conveys the reality of life with a chronic illness. It was already on my wish list, but I’m so glad that this shortlisting gave me a chance to read it. Though I haven’t read the other nominees yet, the passages below are proof that this would be a deserving Barbellion Prize winner.
You go through life as a chronically ill person with so many different people who have so many different opinions about how your treatment should be. They’re not always useful or right. You have to build your own narrative and your own sense of what feels appropriate. You have to learn to trust your body to tell you what’s working. But that’s hard too, when your body keeps changing the rules.
I am one of the more privileged ones and still I’m screaming. God, it would be so nice just to dissolve into nothing and wash up onto a lonely beach.
I wonder if what I’ve learned about chronic illness, more than anything, is that it’s a constant cycle. You fall apart, then you try your best to rebuild again. I wonder what would happen if I stopped trying.
Readalikes I have also reviewed:
- Heal Me by Julia Buckley
- Bodies of Water by V. H. Leslie
- My Year of Rest and Relaxation by Ottessa Moshfegh
With thanks to Penned in the Margins for the free copy for review.
Although over 100 books from the second half of the year are already on my radar, I’ve limited myself here to the 15 July to November releases that I’m most excited about.
The modest number is a cheat in that I’ve already read seven books from this period in advance (plus I’m currently reading another three), and I haven’t listed any that I already have access to via proofs, promised finished copies, NetGalley, Edelweiss, or library preorders. Some of these that I intend to read are A Traveler at the Gates of Wisdom by John Boyne, D (A Tale of Two Worlds): A Modern-Day Dickensian Fable by Michel Faber, Bringing Back the Beaver by Derek Gow, Just Like You by Nick Hornby, How to Fly (poems) by Barbara Kingsolver, Vesper Flights by Helen Macdonald, Utopia Avenue by David Mitchell, Summerwater by Sarah Moss, Lake Life by David James Poissant, Dear Reader by Cathy Rentzenbrink, Jack by Marilynne Robinson and The Wild Silence by Raynor Winn.
(Meanwhile, two of my overall most anticipated 2020 releases have been pushed back to 2021, at least in the UK: Transcendent Kingdom by Yaa Gyasi and The Anthill by Julianne Pachico.)
The following are in release date order, within sections by genre; the quoted descriptions are from the publisher blurbs on Goodreads. For most I’ve added a note on why I want to read it. Nonfiction dominates: this seems to be the way of 2020 for me. Lots of flora and fauna on the covers and in the themes. Look out for antlers x 2.
Artifact by Arlene Heyman [July 9, Bloomsbury] “A sweeping debut novel about love, sex, motherhood, and ambition that follows a gifted and subversive scientist’s struggle to reach beyond cultural constraints for the life she wants. … Artifact is an intimate and propulsive portrait of a whole woman.” Susan of A life in books put me onto this one; here’s her review.
Sisters by Daisy Johnson [Aug. 13, Jonathan Cape / Aug. 25, Riverhead] “After a serious case of school bullying becomes too much to bear, sisters July and September move across the country with their mother to a long-abandoned family home. … With its roots in psychological horror, Sisters is a taut, powerful and deeply moving account of sibling love.” I loved Johnson’s Booker-shortlisted debut, Everything Under.
Piranesi by Susanna Clarke [Sept. 15, Bloomsbury] “Piranesi’s house is no ordinary building: its rooms are infinite, its corridors endless. … For readers of Neil Gaiman’s The Ocean at the End of the Lane … Piranesi introduces an astonishing new world.” It feels like forever since we had a book from Clarke. I remember devouring Jonathan Strange & Mr Norrell during a boating holiday on the Norfolk Broads in 2006. But whew: this one is only 272 pages.
The Swallowed Man by Edward Carey [Nov. 5, Gallic / Oct. 27, Riverhead] “A beautiful and haunting imagining of the years Geppetto spends within the belly of a sea beast. Drawing upon the Pinocchio story while creating something entirely his own, Carey tells an unforgettable tale of fatherly love and loss, pride and regret, and of the sustaining power of art and imagination.” His Little was one of my favorite novels of 2018.
Dearly: New Poems by Margaret Atwood [Nov. 10, Chatto & Windus / Ecco / McClelland & Stewart] “By turns moving, playful and wise, the poems … are about absences and endings, ageing and retrospection, but also about gifts and renewals. They explore bodies and minds in transition … Werewolves, sirens and dreams make their appearance, as do various forms of animal life and fragments of our damaged environment.”
Bright Precious Thing: A Memoir by Gail Caldwell [July 7, Random House] “In a voice as candid as it is evocative, Gail Caldwell traces a path from her west Texas girlhood through her emergence as a young daredevil, then as a feminist.” I’ve enjoyed two of Caldwell’s previous books, especially Let’s Take the Long Way Home. Also, I’ve been reading a lot of childhood memoirs and I like comparing them to see how authors capture that time of life.
The Fragments of My Father by Sam Mills [July 9, Fourth Estate] A memoir of being the primary caregiver for her father, who had schizophrenia; with references to F. Scott Fitzgerald and Leonard Woolf, who also found themselves caring for people struggling with mental illness. “A powerful and poignant memoir about parents and children, freedom and responsibility, madness and creativity and what it means to be a carer.”
Avoid the Day: A New Nonfiction in Two Movements by Jay Kirk [July 28, Harper Perennial] Transylvania, Béla Bartók’s folk songs, an eco-tourist cruise in the Arctic … “Avoid the Day is part detective story, part memoir, and part meditation on the meaning of life—all told with a dark pulse of existential horror.” It was Helen Macdonald’s testimonial that drew me to this: it “truly seems to me to push nonfiction memoir as far as it can go.”
World of Wonders: In Praise of Fireflies, Whale Sharks, and Other Astonishments by Aimee Nezhukumatathil [Aug. 3, Milkweed Editions] “From beloved, award-winning poet Aimee Nezhukumatathil comes a debut work of nonfiction—a collection of essays about the natural world, and the way its inhabitants can teach, support, and inspire us. … Even in the strange and the unlovely, Nezhukumatathil finds beauty and kinship.” Who could resist that title or cover?
Antlers of Water: Writing on the Nature and Environment of Scotland, edited by Kathleen Jamie [Aug. 6, Canongate] Contributors include Amy Liptrot, musician Karine Polwart and Malachy Tallack. “Featuring prose, poetry and photography, this inspiring collection takes us from walking to wild swimming, from red deer to pigeons and wasps, from remote islands to back gardens … writing which is by turns celebratory, radical and political.”
The Good Ancestor: How to Think Long Term in a Short-Term World by Roman Krznaric [Aug. 27, W.H. Allen] “Drawing on radical solutions from around the world, Krznaric celebrates the innovators who are reinventing democracy, culture and economics so that we all have the chance to become good ancestors and create a better tomorrow.” I’ve been reading a fair bit around this topic. I got a sneak preview of this one from Krznaric’s Hay Festival talk.
Eat the Buddha: The Story of Modern Tibet through the People of One Town by Barbara Demick [Sept. 3, Granta / July 28, Random House] “Illuminating a culture that has long been romanticized by Westerners as deeply spiritual and peaceful, Demick reveals what it is really like to be a Tibetan in the twenty-first century, trying to preserve one’s culture, faith, and language.” I read her book on North Korea and found it eye-opening. I’ve read a few books about Tibet over the years; it is fascinating.
Entangled Life: How Fungi Make Our Worlds, Change Our Minds and Shape Our Futures by Merlin Sheldrake [Sept. 3, Bodley Head / May 12, Random House] “Entangled Life is a mind-altering journey into this hidden kingdom of life, and shows that fungi are key to understanding the planet on which we live, and the ways we think, feel and behave.” I like spotting fungi. Yes, yes, the title and cover are amazing, but also the author’s name!! – how could you not want to read this?
Between Light and Storm: How We Live with Other Species by Esther Woolfson [Sept. 3, Granta] “Woolfson considers prehistoric human‒animal interaction and traces the millennia-long evolution of conceptions of the soul and conscience in relation to the animal kingdom, and the consequences of our belief in human superiority.” I’ve read two previous nature books by Woolfson and have done some recent reading around deep time concepts. This is sure to be a thoughtful and nuanced take.
The Stubborn Light of Things: A Nature Diary by Melissa Harrison [Nov. 5, Faber & Faber] “Moving from scrappy city verges to ancient, rural Suffolk, where Harrison eventually relocates, this diary—compiled from her beloved “Nature Notebook” column in The Times—maps her joyful engagement with the natural world and demonstrates how we must first learn to see, and then act to preserve, the beauty we have on our doorsteps.” I love seeing her nature finds on Twitter. I think her writing will suit this format.