The Barbellion Prize – A Roundup

At the end of last month I agreed to help promote the inaugural Barbellion Prize by reviewing its shortlist. I wrote about this here. All I initially knew about the books selected were their titles and the aims of the prize. I trusted that the judges would choose books worth reading – this proved a good call.

This year all shortlisted books were memoirs. It quickly became clear that each was structured differently, reflecting the authors’ skills – including use of language.

Most were beautifully written, a pleasure to read. Experiences were not mined for misery – to garner sympathy – but rather to help raise awareness of issues faced.

Over the past couple of weekends I have posted my thoughts on each book. Below are links to my reviews.

On 12th February, Golem Girl was announced as the winner of the prize. I have no quibbles with the judges’ choice – plus the amazing artwork by the author complemented the text perfectly. My personal favourite was probably Sanatorium, for its lyricism, but the list was so strong there was no disappointment at the outcome.

I was not the only book blogger approached to review the shortlist. If you would like to find out what other readers thought of these titles, check out the following blogs.

My thanks to the Barbellion Prize for arranging with the publishers for me to be sent copies of the four shortlisted books. I feel privileged to have been involved.

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Book Review: Kika and Me

“Changing attitudes about disability is mainly about education. That’s why I do my best to talk about my life.”

Amit Patel grew up in the town of Guildford, England. As the son of local corner shop owners, he was well known in his neighbourhood. A livewire, he liked nothing better than to try any new sport, especially those offering some risk. He was supported in all his endeavours by his close-knit family.

As someone who was not privately educated, attaining a place at Cambridge to read medicine was a notable achievement. It was during his university years that Amit learned he had an eye condition – one that should be correctable with surgery. Treatment was not as straightforward as expected. He underwent numerous procedures, although these did enable him to finish his training and enter his specialism as an A&E doctor, working at a busy London hospital. He married the girl of his dreams – Seema – at a lavish wedding attended by 600 friends and relations. They settled down to enjoy married life in a house close to Amit’s parents.

Kika & Me is Amit’s memoir. Although opening with a prologue describing an episode of disturbing human cruelty, the chapters covering his early life paint a picture of perfect happiness. Perhaps that is how he remembers those years given what happened next. In November 2013 he woke up with blurred vision, quickly and unexpectedly losing his sight altogether. Not only was he plunged into a world of darkness, this was accompanied by constant pain. Drugged and depressed, grieving for an expected future he had been anticipating with relish, he pushed Seema away.

Thankfully for Amit, his wife is a determined individual. At the end of the book she provides a brief account of how she too suffered, but at the time she became the rock on which Amit could rebuild his life. Gradually he refocused on new achievements: learning braille, walking with the aid of a white stick, attending therapy sessions run by organisations supporting the visually impaired. He learned to ask for help and attained a degree of independence. Seema encouraged him to apply for a guide dog – a move that would transform their lives for the better.

The writing style is simple and unchallenging but provides fascinating insight into the process of learning to live with blindness. It is horrifying to consider how some people treat the visually impaired – selfish thoughtlessness, attempts at taking advantage, and worse. This is perhaps why a book such as this, bringing such issues to light, matters. The more that is understood about the difficulties faced, the more can be changed to help. Amit proved himself a fine advocate, unafraid to challenge when needed.

Social Media, particularly Twitter, showed him how he could raise awareness. After learning that, unbeknown to him, a fellow traveller on the underground had attacked his guide dog, Kika, he fitted her with a camera. He posted a short video clip of a subsequent attack that went viral. When people know what is happening and find it unacceptable, they may be more willing to help prevent a next time.

Amit was raised a Hindu and writes of his work trying to persuade Temple hierarchy to allow guide dogs admittance. Some have been more accommodating than others. Through responses to tweets, he garners the attention of the mainstream media. He has forged a role for himself as an advisor and speaker, working towards enhancing rights and fostering better understanding of difficulties the visually impaired must navigate.

The attention Amit now commands has granted him the attention of those with influence, as well as earning him awards that help raise his profile further. In gaining a new career, he has regained his self-esteem. His work has the potential to make life better for others.

In his personal life Amit has proved that a blind man can be a hands-on father, even when his efforts have not always met with support from other parents. He writes of his determination never to let his impairment hold his children back.

The book concludes with an ‘Ask Amit’ section that offers suggestions on how to treat those like the author – a useful guide for any who may wish to offer help without offending.

Although an easy, at times sugared, read, the story told fulfils its aim of raising awareness. Given all that Amit has achieved – including driving the ‘reasonably-fast car’ for an episode of Top Gear (!) – it is also an inspiring reminder that disabled does not equate to incapable.

My copy of this book was provided gratis by the publisher, PanMacMillan, at the request of The Barbellion Prize, for which it is shortlisted.

Book Review: Golem Girl

“Ableism is the belief that in an ideal world, all bodies should be flawless, or that they should at least try to be cured.”

Riva Lehrer was born in 1958 with the inner layer of her mother’s placental wall adhered to her skin swathing the lower half of her body like a mummy’s bandages. She had a red sac protruding from her back. She had spina bifida. At the time only 90% of babies born with this condition lived to see their second birthday. Prevailing medical opinion was that they should be left alone – only those who survived proving themselves worthy of the medical resources necessary to treat them. Riva’s mother, Carole, had already suffered two distressing miscarriages. She was determined to fight for her living child and found an ally in a surgeon freshly trained in the latest techniques for treating spina bifida. Newborn Riva was operated on – the start of decades of surgery in which doctors would try to make her body more ‘normal’.

Golem Girl is a memoir that tells the personal story of an accomplished artist and teacher whose life has been built on the belief that she is a monster – an aberration. Throughout her childhood she was expected to submit to painful surgeries and treatments that her mother sought in an effort to, if not ‘cure’ her daughter, at least enable her to function and fit more smoothly into a society that would cruelly comment and stare with impunity. Thankfully, attitudes changed over the years, although in her epilogue – written in May 2020 – Riva questions the underlying truth of this.

The first half of the book covers the author’s childhood, during which she would have little agency over her treatment and education. Carole was a formidable advocate, supported by her fiercely Jewish wider family. She did not consider that Riva could want anything other than to be made less obviously disabled. She also took life changing decisions for her daughter because, as she bluntly stated, she did not believe Riva would ever find a loving husband, looking as she did. She wished to protect her child yet could never see her as anything other than someone in need of fixing.

Not all the surgeries Riva underwent resulted in the outcomes aimed for, yet still her mother persisted in her search for treatment that would change how her daughter looked and moved. As she grew older, Riva started to question their necessity, angered that she was not consulted.

Riva was in her late teens before she gained any sort of autonomy – and this was under difficult circumstances for the family. It would be many more years before she would question the orthodoxy that surgery was necessary, not to save her life but to make her look more acceptable. She was a talented artist still trying to find her niche in a world that could not see her and her work except through their blinkers of what others considered the bounds of femininity and disability.

Riva did find love, and also came to question why society struggled to regard people like her as acceptable as they were.

“Disability was natural, as was queerness, and neither were in need of correction or eradication.”

The timeline of the second half of the book jumps back and forth through several decades as the author explores a variety of issues she faced as an adult. There were a number of significant love affairs. There were friendships that resulted in impressive bodies of artwork. Throughout the book are illustrations of some of Riva’s art – many of them portraits that study the lives of other disabled people. These are reproduced in a section at the end which describes them more fully.

I use the term disabled aware that such a term may not be acceptable to some. Riva discusses this as she tells her story – how descriptors have changed in her lifetime. As a child she would be subjected to abuse regularly – neighbourhood children calling her ‘retard’ and pelting her with missiles. As an adult she was approached by a stranger intent on telling her: if I looked like you I’d kill myself. All of this has shaped Riva’s perception of herself, and her self-confidence. That she used her experiences to get to the stage she is at now is remarkable – or maybe that view is also reductive and I should listen more carefully.

This is an eminently readable and important work, depicting as it does life through the lens of a woman who has been both othered and dehumanised. Thanks to her own efforts and the ongoing support of her family, Riva has been able to carve an independent life for herself. She points out that financial constraints prevent many disabled adults from ever leaving their parents – infantilising them in a cocoon of well-meaning autocracy.

A poignant and moving tale but also one that is anger inducing when one considers how the disabled continue to be treated. The artwork within these pages speaks as powerfully as the words – of bodies that are beautiful and have achieved and are various. This is a story that deserves to be heard and then heeded. A recommended read.

My copy of this book was provided gratis by the publisher, Virago, at the request of The Barbellion Prize, for which it is shortlisted.

Book Review: Sanatorium

Abi Palmer is an artist and writer who has suffered from a disabling chronic illness since childhood. In this, her first book, she writes of the treatments she received and the effects they had on her body while attending a thermal water-based rehabilitation programme in Budapest, Hungary. Her visit was funded as part of a research project. Many of her fellow attendees pay for their own, annual visits. The sanitorium reminds the author of a hotel, with comparable private accommodation. This differs from her previous rehab experience, provided by the NHS, in which she shared a ward with 17 other patients.

Entries jump between Budapest, London and Chertsey.

The author lived in adapted accommodation in Chertsey, visited daily by time-stretched carers, to enable her to attend college. Some of the anecdotes she shares of this time, how she was treated, are horrific.

In London she lives with her partner, Hans. When no bathtub is provided in their flat – such provision goes against regulations in case she falls climbing in or out – she purchases an inflatable one from China. Its gradual deterioration is mined for metaphors of her body’s struggle to function adequately.

The stories are presented as short episodes of treatment, interactions and complications. The language used is poetic with much use of imagery.

The author has occasional out of body experiences and vivid dreams. She muses on Saint Teresa of Ávila, a Carmelite nun and mystic who claimed healing through instances of religious ecstasy. The author muses on this and her own sexual escapism.

The pain Palmer suffers is described in succinct yet vivid detail. She also has digestive issues and regular skin complications. Having lived with her condition for so long, she is wary of being pushed too hard at the sanatorium and suffering consequences. Nevertheless, she wishes to give the treatments offered in Budapest a chance before refusing them.

Occasional sketches, drawn by Nick Murray, enhance the text – as does the generous use of white space.

The theme of floating – in water, air and mind – is made more salient due to Palmer’s inability to physically support her body easily. Walking unaided for just a few minutes is a challenge – movement requires mobility aids. Those offering treatment are not always sympathetic to the recurrent pain the author lives with. All this is presented through action and consequence alongside graphic description.

Back in London, Palmer feels well enough to attend a party with friends.

“It felt really nice to be included. I also didn’t have the usual feeling that haunts me: I wish I’d been able to stay longer, I wish I fitted in, I wish I felt part of things.”

I hesitate to describe this as a beautiful book given its sometimes devastating subject matter, yet there is an exquisite quality to the writing that brings it alive. The visionary prose does not shy away from bodily functions and their occasionally gross aspects. What lingers is more rarefied.

Living with pain is shown to be exhausting and consuming but there is more to the author’s life than survival. She retains her appreciation for that which she finds comforting or aesthetically rewarding. An eye-opening but still life affirming read.

My copy of this book was provided gratis by the publisher, Penned in the Margins, at the request of The Barbellion Prize, for which it is shortlisted.

The Barbellion Prize

The Barbellion Prize is a book prize dedicated to the furtherance of ill and disabled voices in writing. The prize is awarded annually to an author whose work has best represented the experience of chronic illness and/or disability.

The awarded work can be of any genre in fiction, memoir, biography, poetry, or critical non-fiction from around the world – whether it is in English, in translation, traditionally published, or self-published.

The prize is named in tribute to English diarist W.N.P. Barbellion, who wrote eloquently on his life with multiple sclerosis (MS) before his death in 1919.

 

Earlier this month I was delighted to be contacted by Jake Goldsmith, creator of The Barbellion Prize, asking if I would consider taking this year’s shortlisted books to feature on my blog. I had been following the prize on Twitter and was happy to become involved.

In writing about why he set up the prize, Jake states:

It can take a lot of time and energy to be ill, and many do not have the luxury of being able to write about their lives, or be creative, or even the opportunity of an education in order to do that. And it would surely be better if we could see and celebrate these lives more.

The prize is being judged by

  • Dr Shahd Alshammari – Assistant Professor of Literature, currently teaching in Kuwait
  • Jake Goldsmith – founder and director of The Barbellion Prize
  • Cat Mitchell – Lecturer and Programme Leader of the Writing and Publishing degree at the University of Derby

All are writers who live with chronic illness.

 

The 2020 Longlist

I have only read one of the longlisted books – Saving Lucia – but liked the sound of the four books I was being offered.

I look forward to reading these as they arrive and posting my thoughts.

The winner will be announced on 12 February 2021.

 

To find out more about The Barbellion Prize, you may visit its website: here.

You may also follow them on Twitter: @BarbellionPrize