Book Review: Neither Weak Nor Obtuse

I first came across Jake Goldsmith when I was asked to help promote the inaugural Barbellion Prize  – a book prize dedicated to the furtherance of ill and disabled voices in writing – which he founded. I became aware that he lived with chronic illness but had no comprehension of how much this affected his life. Neither Weak Nor Obtuse removed some of the blinkers that exist when casually pondering the difficulties faced by those who struggle with daily tasks most accomplish with unthinking ease. Such lack of consideration may be unintentional, but works such as this are important if only to raise awareness of how society must do better and not turn away when challenging issues are raised.

“Heaven forbid you make the healthies uncomfortable. One better not present a less than heroic image”

The author describes his book as an ‘indulgent memoir’. I came to view it as a philosophical treatise. Although clearly articulated, the thinking is meaty, requiring time to consume and digest. While indirectly personal, thoughts and feelings are often expressed through opinions on others’ written works.

Goldsmith was born with cystic fibrosis, a progressive and life limiting condition for which there is no cure. He makes clear that he is now very ill and has known since childhood he is likely to die before his peers. This prognosis has shaped his attitude and outlook. Nevertheless, he remains a highly intelligent and reactive young man with all the baggage this brings. Within these pages are moving reflections on love, romance and friendship – how some may feel that allowing oneself to care deeply for a person with limited life expectancy could be regarded as an act of ‘self-harm’, and how hurtful and damaging this thought process can be. The author writes of loneliness, of a longing for companionship. It is not a call for sympathy so much as a reminder that the ill and disabled are human beings.

The early sections of the book reflect on how shallow and fickle much thinking is in our current culture of fast media and judgemental reaction.

“With the contemporary world comes mass saturation. Slowing down to reflect goes awry when surrounded by zooming things. And I want something reflective over something so hurried. It is in some ways a primitive wish. A quickened culture, as well as one of mass quantity, neither reflects nor understands itself very well.”

The author spends some time pondering the way society allows itself to be led down pathways without examining cause and effect more deeply – believing the soundbites and shallow virtue blaming – and how this could be changed.

“Our opponents are stronger than we think and we need to act tactically and more astutely”

He cautions against those who believe pulling systems of governance down is necessary as this would merely open the doors for new oppressors to enter.

“Razing the ground does not give a pristine opportunity to rebuild, because most are incapable of that”

Goldsmith is also wary of those who believe their country harbours so much that is bad it should be abandoned, and of those who are so convinced by their own intelligence they look down on anyone who doesn’t agree with their opinions.

“Arrogance comes easily if one can set themselves apart from their peers just by knowledge accumulation”

The ideas presented are woven around the writings of many historic thinkers. The author is obviously well read and capable, peeling back the layers of common complaint and complacency to urge a more profound and reflective debate.

This is not, then, a memoir in the more common vein of the genre. Nevertheless, it offers a window into the experience of living within a painfully failing body while retaining a sharp and questioning, if modestly presented, intellect and open heart.

Not a book to be rushed but one with potential to change a reader’s outlook, especially as regards the ill and disabled and the lives we all live in a shared society. A profoundly moving but also thought provoking and rewarding read.

My copy of this book was provided gratis by the publisher, Sagging Meniscus.

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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.

• Golem Girl by Riva Lehrer, published by Virago
• The Fragments of My Father by Sam Mills, published by 4th Estate
• Sanatorium by Abi Palmer, published by Penned in the Margins
• Kika & Me by Amit Patel, published by Pan MacMillan

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.

• The Last Word Book Review
• Bookish Beck
• Linda’s Book Bag

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.

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