“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.