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.
(Fellow bloggers John Fish and Jackie Law have also been reading along with the Barbellion Prize shortlist. See their reviews thus far: John—Mills and Palmer; Jackie—Mills and Palmer.)
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?
I read and loved the Sam Mills book last year (and reviewed it on Shiny). Glad to hear you liked it so much too.
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I remember seeing your review. I’d just reread The Great Gatsby for book club and we’d chatted a fair bit about Scott and Zelda, so this was good timing for me!
Kika and Me sounds especially interesting, I’ll need to see if it is available as an audiobook. As someone who was born blind, I have always been attracted to the stories and experiences of people who lost their sight, and have to learn processing the world differently. Guidedogs arn’t for everyone, but I’m glad this was a success story over all.
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I had no idea you were blind! Patel mentions something that he (and others who previously had full vision) struggles with: Charles Bonnet Syndrome, which involves disturbing visual hallucinations. Specifically, his recurring one is an image of the girl in the white dress from the horror film The Ring.
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Both of these sound fascinating. Like you, I think I’d like hearing about the day to day life of a visually impaired person. I bet there are so many challenges we don’t even think about. Especially with children! How awful that he gets treated badly when he’s out. 😦
Schizophrenia is also interesting to read about. I have a friend whose father was diagnosed with schizophrenia, but their mother kept it a secret until they were grown which she said was a mistake because it would have explained so much.
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Kika has a collar camera to capture these incidents. It’s so hard to imagine people seeing vulnerability and wanting to hurt rather than help.
Family secrets almost always end up being detrimental, don’t you think? Full honesty, even if you’re worried the children won’t understand, seems like the best policy to me. I’m always fascinated to read about mental illness in families.
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You’ve brought attention to each of these titles and to the prize in general: so great! How curious that the administrators have asked for donations to support the prize; I’m trying to think if I’ve ever heard of such a thing with literary prizes…
It’s completely self-supporting; it has no corporate sponsor (many major prizes do — e.g. the Women’s Prize has been the Orange and Baileys; the Booker used to be the Man Booker; the Whitbread Awards are now the Costa Awards (a coffee company/cafe chain)) or private donor.
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