Book Review: Neither Weak Nor Obtuse

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.

Book Review: Will This House Last Forever?

will this house

“The only gift anybody really gives you – a version of the world, a version of yourself. A particular experience of life that is only possible between you.”

Will This House Last Forever, by Xanthi Barker, is a memoir of the relationship the author had with her late father, Sebastian Barker. He was a published poet, ‘not famous, but known to some people’. He bought a plot of land in Greece containing the rubble of a derelict house and rebuilt it. He married three times, fathering four children, although he wasn’t much of a father, at least to the younger two. He left the family he made with Xanthi’s mother when the author was just a few months old citing his need to have space to write.

Sebastian, the son of artistic bohemians, was the victim of a boarding school education. He was intense, overbearing and often drunk, disliking the demands of everyday family life. He was also entertaining with his many stories and anecdotes. He shared his interest in history and science with Xanthi, his youngest daughter. Despite her anger at his many casual cruelties, his neglect, she idolised him.

“you were magical to me. I couldn’t see your limitations.”

The memoir is raw in its honesty but also beautiful in the love it conveys. The author can now see the flaws and facades of the man with his grandiose delusions, striving for achievements that were never quite enough to become what mattered. She recognises that she too acted a part when with him.

“I spent my life trying to be someone else to make a man love me, I don’t know how to do it any other way.”

The book opens three years after Sebastian’s death. The author is trying to process how she feels, her grief and inability to accept that he has really gone forever. She then goes back to recall the tale of when her parents first met and how they got together. It is a love story that couldn’t survive Sebastian’s inability to cope with the presence of young children in his day to day plans. After he left, he would spend time with his son and daughter only when it suited him.

Sebastian died of cancer. Following his terminal diagnosis, Xanthi spent as much time as she could with him. She was hoping for an apology for his past behaviour towards her and her family, an acknowledgement that he was glad she existed despite things previously said. She struggled to imagine her life if he was not available to talk to about their shared interests.

“Even though he wasn’t there when I was little, he was a huge presence. He formed so many of my ideas about the world, my values.”

Chapters jump around in time describing: meetings with Sebastian, holidays spent together, the progression of his illness. After her father’s death it takes Xanthi years to fully accept what has happened. She finds herself talking constantly about him, something a steady stream of boyfriends were expected to accept. She came to realise she was pushing them away for fear of getting hurt again.

“How do you find a person who will really see you?
How can you tell if you are really seen?
How can you tell if you are really seeing them?”

Even with other family members the author could not freely be herself. They did not appear to grieve as she did, to value the detritus her father had left behind which she held on to as if still a part of him. Despite having seen his body after he died, she kept expecting him to reappear.

“How quickly
A CV
Turns into
An obituary”

The story being told is of the author and the effect her father had on her life. It is more a memoir of her feelings and reactions – how his behaviour shaped her – than of him. What is being shared so viscerally is how she coped with losing a father who had for many years shunned the role and, in dying, took from her any chance of his becoming what she had for so long needed him to be. She adored her idea of him, what he was to her when together and apart.

A poignant and powerful reminder that every relationship is unique, a construct created that is rarely understood by others, even those involved. The author writes with compassion and insight while recognising both her and her father’s failings. A tale of the myriad forms of loss and grief, in life as well as death, that holds the reader in its spell.

My copy of this book was provided gratis by the publisher, Tinder Press.

Book Review: Shalimar

shalimar

“I am not listening out for the same pitch or cadence, I am listening out, always acutely, to the differences. These, I know, tell me exactly where home is and all the spaces in between.”

Davina Quinlivan describes herself as of diverse cultural heritage. Her forebears are of Irish, Burmese, Portuguese and Indian descent. Within each ethnicity are other minglings as, throughout time, people have emigrated for work or safety, blending to create new identities. Her father was born in Rangoon but lived in England for most of his adult life. Davina was raised within a close, multi-generational family scattered around the West London area, being told the stories of her relatives’ early experiences in distant parts of the world that have since changed borders and names as colonisers secede. There has never been enough money for them to make return visits to those left behind.

Shalimar is a memoir that explores what the links between home and family mean. It opens with a defining incident in her father’s childhood, made all the more poignant as he has recently been diagnosed with cancer. Davina and her husband have been living with her parents for the past six years. They now decide to move away, to settle in their own place. Over the course of the stories being shared they move from London to Surrey, Berkshire, Hampshire and finally Devon. In the intervening years they have two children, and Davina’s father dies.

Grief, for someone with terminal cancer, begins before the actual death. Davina writes of denial, of running away from what she knows is inevitable, and of how she copes when it happens. Her life in London mostly revolved around the streets where she and her relatives lived. Once moved away she starts to use walking as a coping mechanism rather than a way to simply travel. She discovers the beauty and sensation of nature, the comfort to be found there.

“Even if you pull a tree out of the ground, its roots will have threaded through the other trees around it and will go on providing a scaffolding to the living systems it has dwelled within for years to come.”

Although there is obvious fondness and gratitude for the stability they offered, observations and anecdotes from wider family get togethers are entertaining and recognisable. Being related, especially through marriage, doesn’t necessarily mean being liked.

“In truth, there was a subtle history of unspoken tension between these two sides of my family, which followed them to England. Both families had known each other in India and Burma, but they were very different … These differences would manifest themselves at family gatherings, never openly admitted, but there in the way they interacted with each other. Everyone would be measuring each other’s behaviour.”

Many of the author’s musings focus on how a person is shaped not just by personal history but also by the histories of parents, and they by theirs’. In her children she recognises features they have inherited from both sides of their family. She ponders what they carry forward of her late father.

Quinlivan’s own experiences include the influence of aunts, uncles and grandparents. For example, she remembers, as a young child, being taught to swear in Burmese.

“Though a little blunt and inappropriate, it was a lesson really: in her own way, she was teaching me to be armoured, to be fierce.”

Davina may not have moved as far as her forbears to resettle but the new lands she encounters have similar issues. Ownership is asserted by the powerful not because of love of place but for the right to plunder its wealth. As she walks through fields and woodland she observes how everything eventually goes back to the earth or sea from whence it came. The great oak trees planted when ships were built from them remind her of the journeys her family made to get to England.

“this book is not my ship, it is my father’s, carrying my family safely within it, through all the little gaps in space and time.”

The prose in places is dreamlike and poetic. The grief the author feels is palpable. There is humour and love aplenty but what comes to the fore is how much a part of everything everything is. We are affected by an ecosystem whether or not we acknowledge it.

A hauntingly beautiful memoir that evokes the multiple layers that exist in people and place. An appreciation of life in its myriad incarnations.

My copy of this book was provided gratis by the publisher, Little Toller.

Book Review: The Long Field

long field

The Long Field, by Pamela Petro, is a memoir wrapped around musings on hiraeth – a Welsh word that approximates to homesickness. The author spends much of the book attempting to more clearly define the word for a wider variety of uses. The writing is also a paean to Wales where Petro, an American, studied for her MA in 1983. In the intervening years she has made more than 27 trips to the country – for work as well as pleasure – and she now directs the Dylan Thomas Summer School in Creative Writing at a small campus in Lampeter, linked to the University of Wales. The school attracts students from a variety of ethnicities and backgrounds – unusual in this remote and insular location. As well as teaching, Petro hopes to inculcate at least a few of her charges with the deep and abiding appreciation of the place, something she felt from the outset.

The author was born and raised in New Jersey, by loving parents who longed for their daughter to find the settled family life they had enjoyed. Petro, however, fell in love with a woman she met in Paris – Marguerite – although she never openly came out to her parents. She tried dating boys in Wales but did not find her happy ever after. What she did find was a feeling for the country that altered her profoundly.

“Wales was an ancient nation with one of the oldest languages in Europe, a proud, parochial, working-class, mostly rural place … I was a suburban, middle class, liberal, naïve American kid. And this place felt like home.”

Petro is eager to learn the Welsh language and muses on the importance and benefits of keeping local cultures alive. She delves into ancient history, particularly around the stone-age megaliths of the region, discussing how traders and invaders brought supposed progress that may have made life easier but also different. Successive changes over time shifted the balance of power, often at a cost to the indigenous population.

Fond as she is of the Welsh countryside and customs, she cautions against blind nostalgia.

“A good friend of mine might be able to travel to Italy, but her grandfather’s rural village of family stories – always conceived by her generation as a future destination – is now a suburb of Naples. The village only exists in memory and imagination. Hiraeth speaks to the salveless ache of immigrants and their descendants.”

To a degree, however, such longing can bring benefits if considered in wider context.

“To be able to put a name to what refugees are experiencing in exile as they seek safety far from home means that we who are already home can more easily put ourselves in their place.”

The author’s ponderings on language, stories, conquest and loss meander through the pages. There is much repetition as she tries to capture the subjects that intrigue her. Despite her obvious love for this small, damp country in western Britain, she comes across as, and admits to being, very American in expectation and outlook. Her positive perspective barely skims the surface of the lives of residents whose choices are stymied through being unable to afford to leave.

Petro is obviously a skilled writer. She provides a clear and concise analysis of Trump’s victory. The historic and literary elements of the book are fascinating. I learned much about the legend of Arthur, and other myths that were once believed. I would, however, have preferred a pithier version. In rambling so freely and repetitively through place and time, engagement occasionally waned.

Perhaps, for me, this memoir would have worked better as an addition to the publisher’s fabulous Monographs series. There is much beauty within its pages but I prefer the threads of a tale to be more tightly woven than this. Having said that, the meandering fits with Petro’s years of trying to pin down an idea that is hard to translate. A thought provoking if somewhat long read.

My copy of this book was provided gratis by the publisher, Little Toller.

Robyn Reviews: In The Wars

‘In the Wars’ is a moving medical memoir by an NHS doctor and Afghan refugee. It offers a fascinating, if horrific, look into life in Afghanistan in the 1990s and the experience of growing up through civil war. It also paints a stark picture of what it’s like to be a refugee in the UK – the rigidness of the asylum system and the impact this can have. Latter chapters explore Dr Arian’s humanitarian efforts – the charity he founded to improve healthcare in Afghanistan and other war-torn countries, and how his experiences have shaped how he approaches humanitarian aid. Dr Arian writes in a simple yet effective way, making profound observations. A highly recommended read.

The story starts with fifteen-year-old Waheed in Feltham Young Offenders Institution. He’s just arrived off the plane from Afghanistan as a refugee, and immediately been arrested on charges of travelling on a false passport – a charge with up to ten years in prison. Waheed is confused and alone, not understand why he’s been arrested when he believes himself a legitimate refugee. His cellmate is there on charges of theft – Waheed doesn’t understand why anyone would steal when they have the chance to legitimately work and earn money. It sets the tone for the rest of the memoir – a story with moments of positivity and hope, but also one that shows the harsh reality of growing up in a warzone and navigating a deliberately hostile immigration system.

We then go back in time to Waheed’s childhood. Born in Kabul, his early life was relatively peaceful, albeit with some strange quirks he never thought to question – not being allowed to play outside, only his mum and eldest sister being allowed to answer the door. The eldest son, he was granted privileges not afforded to his sisters. However, life changed quickly – his father was conscripted into the military, but wanting to remain neutral deserted, leaving the family in a precarious social and financial situation. As conflict escalated, the family fled to their first refugee camp in Pakistan, with the rest of his childhood split between spells in Pakistan and spells returning to Afghanistan in the hope things would be better. The family was regularly separated, and Waheed was forced to grow up far earlier than he should have. There was a constant fear of death, and not just from conflict – he nearly died of tuberculosis in a Pakistani refugee camp aged just five due to a shortage of medicines. It was that experience that cemented in Waheed’s mind that he was going to be a doctor.

These early passages are shocking. Britain is taught woefully little about modern history, and the precise origins of the conflict in Afghanistan were new to me. Dr Arian covers them almost matter-of-factly – because to him, there was no other way of living. This makes them more profound than any dramatisation. There are happier moments – the birth of siblings, trips to family in the Afghan countryside – but these are mere blips in an otherwise bleak canvas. Its difficult to imagine how anyone survived – harder still to think that there are millions living like this today.

Barely a teenager, Waheed decides to enrol to study medicine at the Islamic University in a Pakistani refugee camp. This is not an accredited university, but the only way he can see of achieving his dream of becoming a doctor. However, his family choose to return to Afghanistan – leaving him, at thirteen, living a totally independent life. Waheed is a child surrounded by adults, and reading about this time is heartbreaking. The mental toll of separation is almost inconceivable. However, his joy in his studies is clearly apparent. There’s an interesting dichotomy between his joy of being so close to his dream, and the sadness of everything he’s giving up – plus the knowledge that, as fulfilling as the course is, it won’t actually give a qualification recognised anywhere outside the refugee camp.

In these chapters, Waheed also gives the greatest insight into the political situation in Pakistan and Afghanistan, and how the rise of various militant factions affects day-to-day life. Again, it’s a fascinating look at a piece of modern history that is rarely contextualised in Western media. Waheed’s drive and determination is admirable, and its impossible not to be affected by the plight of a thirteen-year-old separated from his family in search of a better life.

It’s around this time that Waheed, naturally, starts to think about seeking asylum elsewhere to pursue his dreams. These passages are difficult to read in a different way. Waheed is hugely vulnerable to exploitation, and the way those around him use his plight is horrendous. It’s one thing knowing that the UK – and many other countries’ – immigration departments are designed to put off asylum seekers, another entirely to read first hand how confusing and traumatic the process is. In many ways, Waheed is fortunate – he does make it to the UK, and whilst he’s initially treated like a criminal he eventually succeeds in claiming asylum for both himself and his younger brother. Reading this section, it’s clear Waheed’s success is in a huge part down to both luck and his own intelligence. It’s clear that many others like Waheed will have had stories ending a different way.

Asylum seekers are not allowed to work. They receive housing benefit, but many landlords won’t accept tenants on housing benefit, and the benefits available don’t always cover the cost of living. Young asylum seekers like Waheed can access education, but are not given the knowledge of what qualifications will be useful to them – they must figure this out by themselves. Like many asylum seekers, Waheed works multiple jobs illegally to scrape together enough money to survive and build a life for himself. Once again, his sheer tenacity shines through. It’s difficult to imagine just how hard this period was for him.

Against all the odds, Waheed makes it to medical school – initially Cambridge, then transferring to Imperial for the clinical years, a path that was common then. Here, his struggles take on a different note. A little older, and far less affluent, than his course mates, Waheed struggles to make genuine connections. His cultural background leaves him unsure how to interact with them – women especially. He also, for the first time in his life, starts to struggle academically. Elements of this section are harder for Westerners to relate to – his search for a wife, for example – but it’s interesting seeing why this is so important to Waheed and his family, and how the intersection of his Afghani and Western upbringing affects how he approaches things. The guilt he feels about betraying his roots is palpable and very moving.

The final part of the tale follows Dr Arian as he navigates medical training and sets up his charity, Arian Teleheal. It’s lovely seeing how much joy he gets from his dream job and what being a doctor means to him. After so much suffering, it’s also wonderful to see him settled and happy with a family of his own. The guilt is still there – most of his family is still in Afghanistan or Pakistan, and he worries about leaving them behind – but there’s also the awareness that he’s helped them far more by taking the risk and leaving than he would have by staying.

The sections on the charity are interesting, but after a time become a bit repetitive. Arian Teleheal is a wonderful organisation, allowing doctors in countries like Afghanistan and Syria to access the knowledge of doctors practising in the Western world. Its expansion and achievements are incredible, but unfortunately the end of the memoir turns into a sort of list of them, losing some of the emotional impact of the rest of Waheed’s story. Teleheal appears to be the only reason he’s released a memoir – in the hope that his story will drive further investment and achievements for the charity – which is admirable. I hope it succeeds. It’s a shame, therefore, that the Teleheal section is the one with the least poignancy and resonance to the reader.

Overall, ‘In the Wars’ is a powerful and moving story about living through conflict, the refugee experience, and one man’s determination to give back. Dr Arian is clearly an incredible person and I hope his charitable endeavours have the success they deserve. Recommended for those who want to learn more about an important piece of modern history and those just looking for a powerful, moving read.

Thanks to NetGalley and Penguin Random House for providing an eARC – this in no way affects the content of this review

Published by Bantam Press
Hardback: 17th June 2021

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.

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: The Pleasure of Regret

I first came across Scott Manley Hadley when I read his poetry collection, Bad Boy Poet. This intrigued me so I started to follow his blog, Triumph of the Now, where he posts his thoughts on books alongside how he is feeling. There is an honesty in his writing that can be shocking at times but is mostly refreshing given how caged most writers – and others – remain about what would be considered their private life.

The Pleasure of Regret is a memoir written in a mix of poetry and prose. It opens with a poem that encapsulates how certain adults try to pass on what they consider wisdom to their children as they reach adulthood – an endeavour that is unlikely to achieve the intended result.

“I think this man
Was not a man
Used to ignoring himself
And here
He confused
Arrogance
With wisdom.”

The advice giver is the father of a valued friend. Manley Hadley has a challenging relationship with his own parents who he grew to despise while attending grammar school, for reasons explained. He writes of the bullying endured at this place, and then the friends he made in sixth form. This section captures the magic of a period in life when everything seems possible – the intensity of friendships made in late teens.

“Nudity and poetry and music and liquor. Cigarettes and dinner jackets and-
I miss it.
I miss it most because I know it, and nothing like it, can ever happen again.”

“It felt magical because it felt like it would never end. It felt magical because I thought life would keep getting better.
It didn’t.”

The author goes to university – an establishment chosen for potential fun rather than academic rigour. Following graduation, he enters a toxic relationship with an older woman that will last a decade. The woman is wealthy and destructive – self-centred and manipulative. This period in Manley Hadley’s life is shaped by substance abuse and depression.

“When I began learning Spanish,
She disapproved.

She said,
“I already speak Spanish.”

She said,
“How is that going to help me?”

my favourite lines
are the lines of poems
her favourite lines
are not”

The breakdown of the relationship is followed by a severe mental health breakdown. As the author writes, not all wounds heal.

There follow sections in which Manley Hadley writes about his parents, both now suffering chronic health conditions that will likely bring forward their deaths. He acknowledges that they are not bad people, but that they didn’t give him what he needed from parents. Again, there is a rare honesty – few would openly admit to such feelings despite their omnipresence.

Footnotes in the book occasionally send the reader to the author’s earlier blog posts. I made sure to read these entries as they offer further understanding of how Manley Hadley’s life has been shaped.

Another thread explored is academia – a career choice considered when the author was trying to claw his way out of impending mental breakdown. The veneer is stripped from the hallowed spires, revealing a truth about how academics exist within their bubbles, revered by peers and detached from those unlike them.

“The academics, the readers, the thinkers… some professional, some – like me – amateur, were all linked by class and intellectual interest.”

The memoir closes with a timeline and then a diagnosis for the disorder the author suffers. While this leads to effective treatment it also eats into how he regards himself – defined, predictable, medically “wrong”.

How much truth can any memoir contain? The author is a poet and writes with laconic intensity. He shares shocking details yet leaves many blank spaces. He longs for love and seeks it in sex that leaves him empty. He harbours regrets and struggles to live with what he is.

This is poignant, powerful writing that offers insights both dark and exquisite. It is intoxicating and searching. A recommended read.

My copy of this book was provided gratis by the author.

Book Review: The Fragments of my Father

“Being a carer can sometimes mean that you end up being an emotional punchbag. You have to remind yourself that it’s often your loved one’s illness speaking, not them.”

In the summer of 2010, Sam Mills’ mother, Glesney, was diagnosed with a cancerous tumour in her kidney. Sam’s father, Edward, had suffered from schizophrenia since she was a young child and Glesney had dedicated her married life to caring for him. Now she would need help. Their daughter agreed to move back to the family home in London, from a village outside Manchester where she had felt happily settled, to become her parents’ carer. Her two brothers had full time jobs whereas Sam’s work was mostly freelance. Nevertheless, she was unaware at the time the toll this role would take on her life and health.

The Fragments of my Father is a memoir chronicling the costs of caring for loved ones. Alongside her own experiences, Sam writes of other authors who were carers for many years – Leonard Woolf and Scott Fitzgerald. The former she regards in a positive light, unlike the latter. Although shocking at times, the details of these men’s treatment of their wives are explored with the caveat that carers are human whose own desires risk being subsumed by the needs of their mentally ill relative.

Edward suffers episodes of catatonia that result in him being sectioned and placed in care homes for the mentally unstable. His anti-psychotic medication is designed to prevent this – to provide scaffolding – but leaves him a shadow of the man he could otherwise have been.

 “It seemed such a waste, his life. If only he had been born in a different era, when his voice might have been accepted rather than labelled a sickness he had to fight. The medications he’d taken were not cures, just compromises, putting him in purgatory, half-awake, half-alive.”

Of course, this is not the whole story. When his drugs didn’t work Edward would become agitated and upset by the voices in his head. Unable to repress his emotions, he would express them in ways deemed unacceptable. Society couldn’t cope with his erratic behaviour – such as his choice to wander naked. Medication made him acceptable.

“his symptoms subdued into a sad, quiet existence”

Sam writes of her childhood – of her father’s absences and the impact his inability to hold down a job had on his family. She was a teenager before she understood his behaviour was a named illness – it took years to reach acceptance and look into what schizophrenia meant. When caring for him, she tried to work out what could have caused his mental breakdown. She muses on the balance between madness and the inspiration of artistic creatives.

Glesney married Edward with expectations of a fulfilling life that were repeatedly stymied. Sam reflects on what her mother lost, and on how she herself will cope with the ongoing situation and the pressures it brings. Caring demands more than action. It brings with it an emotional burden. Difficult decisions must be made for patient and carer.

I read this book as someone who chose the more selfish route. When my increasingly frail parents required hands-on support in their old age, I refused to leave my husband and children to move country – as requested by my sister – and share with her the burden of caring for them. As a result, she shouldered this alone for close to a decade until their deaths last year. The fraught and at times angry updates she would give me came to mind as I followed the experiences the author reflects on – her mental and physical exhaustion and need for breaks she couldn’t take.

Sam was unsure about writing this memoir but was encouraged by a friend to do so.

“I was worried being a carer might be seen as a boring topic to explore. Unglamorous. I said that perhaps I ought to choose a sexier subject. He replied that this was exactly why I ought to write it, because there are numerous books out there about doctors and high-flying surgeons and so few about those for whom caring is an unpaid, everyday duty. There are currently 6.5 million carers in the UK, which means that 1 in 8 of us are carers; the number is set to rise”

What comes to the fore in these reflections is the difficulty of providing for those in need when society has little interest in illness – regarding it as something to be managed stoically, or institutionalised. Family carers find their lives and choices revolving around the needs of their loved ones, their own requirements and ambitions slotted into whatever crevices they can carve out in terms of time and energy. There is love but also a strong sense of duty – ties that bind.

The book is structured in a fragmented timeline, jumping between: Sam’s life, the years spent caring for her mother, the effects of her father’s illness, Leonard and Virginia Woolf, Scott and Zelda Fitzgerald. The language employed is direct, with just the occasional use of words I had to look up: inanition, quiddity. These help emphasise the author’s obvious intelligence, something carers must worry they lose recognition for when they take on a role that is largely undervalued.

This is a story that packs a punch and will resonate with all who have loved ones in need of care, or who face the prospect of need themselves. Sam does not hold herself up for admiration but rather presents this memoir as a cry for better support for all those who, like her, suffer emotionally and financially in order to keep loved ones well. It is also a reminder that mental health issues deserve more empathy and attention.

“psychiatry should not ask the question ‘What’s wrong with you?’ but ‘What happened to you?’

A poignant and timely read from a skilled writer. Recommended.

My copy of this book was provided gratis by the publisher, 4th Estate, at the request of The Barbellion Prize, for which it is shortlisted.