Sarita Sidhu
Golem Girl is a sweeping, stunning work of visual and literary art. It is the groundbreaking memoir of an artist who has refused to be erased by a society with a rigid, very short set of rules on who deserves to live and who can and cannot be human.
Riva’s birth was a miracle, after her mother, Carole, had experienced the trauma of three miscarriages. But her life hung on a thread, a cord; her spinal cord to be specific. Riva was born with the worst type of spina bifida in which a section of her spinal cord billowed from her back “like a gruesome [red] birthday balloon.” This was 1958, when surgical interventions were reserved for only the ‘strongest’ 10% who made it to the age of two; to operate sooner would be ‘wasting’ medical resources. Ironically, and very fortunately, Carole had worked as a medical researcher for a birth defect specialist who did not subscribe to this conventional wisdom. Riva was operated on by a surgeon trained in cutting-edge techniques to close the lesion in her spine. She says “Spina bifida babies are born open to the world.”.
She has undergone more than forty surgeries during her life, and each one delivered the message that she needed to be fixed. She was also given this message in other ways: “People kept giving me books about little crippled girls…All the books agreed on one point: all you really needed to get better was willpower.” The world also spoke to her directly:
Our bus was painted with CONDON SCHOOL in big block letters, so we were always 100 percent visible … Sometimes six or seven kids stood at the corner where we’d stop at the red light; other days, there would be teenagers or even a single vicious adult. There was no lack of people eager to scream ‘Retard!’ at the top of their lungs.
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I was browsing the racks [of an upscale boutique] when a woman planted herself at my elbow, checked me up and down, and announced, ‘If I looked like you, I’d kill myself!
The source of Riva’s self-loathing―going so far as to call herself a monster― is no great mystery. She writes: “I began each day with an illusion. My last act before leaving the house was to take off my glasses … and let Chicago disappear in a smear and a blur. I dodged traffic and baby strollers, dogs and delivery men, all to ensure I wouldn’t see myself reflected in the city’s shop windows and plate-glass mirrors. The sight of me literally made me sick.”
Riva’s avoidance of other disabled people enabled her denial of her own disability. But she admits that she selfishly joined the Illinois Spina Bifida Association when she developed novel frightening health issues, and she needed guidance. She realized that pretending she was ‘normal’ might lead to her death. At the organization’s picnic she tells us she “walked into a field populated by my own body. All of us short and barrel-chested, all of us limping, leaning on our braces, crutches, and canes, or wheeling our chairs over the grass.” She continues “A few brief conversations confirmed my worst suspicions. No one had a job, no one was married or even had a sweetheart, and everyone lived at home.” Propelled by her artistic creativity, this was the fate she had fought so resolutely to avoid.
She writes of her time at Condon “I had memorized the times of the day when the art room was empty and I could work in peace. The art room had always been my room…Art was magical, and not just in the making: people would look at my work, then look at me with a changed expression. One far from the usual oh poor you.”
The author alternates with ease between the universal and the deeply personal throughout the book. She “discovered that there were satisfyingly weird people at DAA [the Department of Design, Art, and Architecture at the University of Cincinnati],” but it was in the Chicago Disabled Artists Collective that she found “[her] people.” As Riva takes us through her political awakening within this group, we are simultaneously educated:
Our true obstacle was not how our bodies or minds functioned; it was having to wrangle with physical and social environments that ignored our existence. I’d always accepted that I wasn’t strong enough, tall enough, fast enough … I’d never considered that society derived benefits from ignoring the needs of the Disabled. Self-blame absolved the normate world for its failures of justice.
I had spent years fighting against misogyny, homophobia, and anti-Semitism, yet I’d so easily believed that I should be ashamed of my body that I’d never understood that shame was both the product of and tool of injustice. I hadn’t just needed Disabled friends. I’d needed friends who could give my experiences context and analysis.
Many years prior, as a young art student, Riva’s overwhelmingly old white male professors had only valued conformist art which perpetuated their own subjective but long- standing aesthetics; there was zero interest in feminist art, and the same total disregard for Riva’s subject matter. Her TA, Bryan, had explained that her task was to find universal subject matter: ‘“A viewer is never going to recognize himself in these pieces of self-indulgence. Yet it’s hardly feminine work, is it?”’ In typical form, Riva wonders “What (in Holy Penis Hell) is Universal Subject Matter?” Bryan graces her with an expansion of his wisdom:
‘The themes that civilization has always chosen as basis for great art! Conflict! Think of Ruben’s Consequences of War…And beauty! Ingress’s Grande Odalisque.‘
Riva understood that the Universal was only “men at war and women in bed” and that “The fragile human body pertained only to [her].” She describes her surprise though with her own response to this realization: “Instead of sobbing, or quitting, I felt the beginnings of fuck you stirring in my soul.”
Through her immersion in disability portraiture, Riva’s indoctrination with conventional beauty standards is shattered:
For most of my life, I had glanced at impairment and looked away, afraid to see myself. Now I looked slowly and deliberately. I let the sight come to me. And beauty arrived … This was a beauty I couldn’t name. It startled me and didn’t, was familiar and unexpected. I remembered how it felt to love disability back at Condon School. I’d rejected that love ever since. “Normal” beauty is unmarked, smooth, shiny, upright; but my gaze began to slip past normal beauty as if it was coated in baby oil. I wanted crip beauty―variant, iconoclastic, unpredictable. Bodies that were lived in with intentionality and self-knowledge. Crip bodies were fresh.
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The division of the memoir into its two sections pivots on Carole’s tragic, untimely, and avoidable death, while Riva was still a high school student. Carole suffered with nerve pain that “[made] it hard to exist” following back surgery performed by a negligent doctor. This led to her addiction to painkillers. The family had become burdened with financial debt due to medical bills and also attorney fees, but justice never materialized. Carole died at the moment her dream career was beginning to blossom:
Twenty-two years after she’d been forced to relinquish fashion design, Carole Horwitz Lehrer would work to change how big women dressed. She left a trail of notepads all over the house, full of gowns that swirled with joy and dignity (and, of course, rhinestones).
Along with the seismic loss, Riva had to contend with the guilt and regret she carried from their final heated conversations around her increasing desire for autonomy. She explains “Mom had been my librarian, my architect, my surgeon general, my curator. She had left me half-formed; for all my teenage rebellion, I was unprepared to take over the task of inventing myself.”
Having spent an unimaginable amount of time in hospital, (the first two years of her life, just for starters) it’s unsurprising―yet simultaneously surprising―that Riva’s first sexual encounter was in the courtyard garden at Boston’s Children’s Hospital, with a hospital employee. It occurred while she was battling with her mother over her need for greater independence. She writes about this awakening with the complexity that emerges over time. Riva also addresses the prevalence of sexual assault and abuse of disabled individuals, both at home and elsewhere.
Riva weighs in on the topic of forced sterilization of the vulnerable, in the context of her own sterilization, without her consent. In tandem with this question of who is allowed to reproduce, she questions, with obvious authority, the abortion of disabled fetuses.
The life of any artist is often synonymous with struggle, and the challenges are multiplied by several orders of magnitude for disabled artists. Riva acknowledges the additional, significant obstacles, while also recognizing her own relative privileges as a white woman with a middle-class upbringing.
I was drawn to this memoir because of my long-standing affinity with the underdog, whose life is rarely, if ever, portrayed with the complexity that is warranted. This is precisely why we must write our own stories. As someone who was born in India and raised in working-class England, the oppressive layers of the misogyny rooted in my own culture, the patriarchal constructs in wider society, racism, and classism, felt like a fire blanket on a life that was predetermined to be compacted and subjugated. As a radical feminist, I understand that there is still a long way to go in the creation of an egalitarian world, because change takes time. A really long time. But it starts with a repudiation of the lies we are told about who we are and all we can ever be.
This memoir is full of joy and humor. Each chapter is short and accessible. Each page is set as though it is itself a work of visual art. The reader is forced to consider their own complicity in the perpetuation of an ableist society through our own blind spots. And so this expansive, insightful book is also a call to much-needed action for the inclusion of the disabled community in all considerations of the greater good.
Sarita Sidhu is a writer and activist in Irvine, California. She was born in India, raised in working-class England, and moved to the US in 1999. Her work has appeared in The Sun (Readers Write), 100 Word Story, Emerge Literary Journal, and elsewhere. She can be found on Instagram @saritaksid