Abhishek Anicca starts his book with a quote by Frida Kahlo. “At the end of the day, we can endure much more than we think we can.” The quote encapsulates Anicca’s journey with his disability. He was born with VATER syndrome, a name for certain rare birth defects. What was supposed to be an affliction corrected by surgery spiralled into a life-long disability for him.  

Growing up, his illness was manageable to the degree that he or his family did not perceive him as a person with a disability.  “Even in college, as I fell ill year after year, sometimes with heartbreaking consequences, I never saw myself as different,” he writes. But the illness made itself known, for instance, when Anicca was rejected after auditions for plays staged by his college theatre group because he was falling sick so frequently.  Things worsened while Anicca was a college student in Mumbai. His limp became more evident, we learn; his mental health deteriorated.  

He continued to try to mask his disability. People in his social circle did not have a nuanced understanding of disability, he recollects. They expected him to “come out of that all right.” His deteriorating health changed how people viewed him, and he faced increasing challenges in relation to his career. After finishing college, he worked with a development organisation often travelling to remote villages in Bihar where he faced challenges in accessing washrooms in a timely manner. Even while working an office job, he faced problems. "I would go to the office and return early. I would take one day of leave, then another. I would lie. I would make excuses...My body had tricked me into embarrassment. I was depressed. I was broken. I quit my job." 

Anicca, celebrated for his poetry, often opens the essays in this book with some original verse. "Strength," a striking example, showcases his knack for evoking a mix of emotions in just 27 words. The poem stirs feelings of shame, fear, sadness, and helplessness. Here it is: 

Anicca knows people to be irked when he shares intimate details of his life. But in the memoir, he bares it all, or much of it. He writes of a memory he has of his childhood, where he soiled his pants in a rickshaw, and how the driver kindly took him back home and cleaned the rickshaw seat without any complaints. He also talks about how this incontinence causes recurring UTIs, its impact on his masculinity and the kinship he found among women because of it. 

Though it is not spoken about often, incontinence and UTIs are surprisingly common among people with lower body impairments. According to one study, people with disabilities were three times more likely to experience incontinence than people without disabilities.  

Inspirational disability discourse often reassures its audience—almost always non-disabled people—that people with disabilities ‘rise’ above their illnesses and disabilities, that they’re ‘so much more’ than a disability. This is obviously true. But the thing about afflictions like Anicca’s is that one’s life revolves around them. As he puts it, “As a disabled and chronically ill person, these are the small but very important questions that dictate your everyday life. When to eat. When to drink and when not to. How much to drink. The decisions you have to make. It’s exhausting.”  

Anicca goes on to write about experiences like finding love as a man with a disability, getting a disability certificate, the expectations of others, the queerness of his body.  He describes the painful journey of house-hunting in Delhi. Due to his disability, he sought a ground-floor apartment near the main road. However, no landlord would rent to an unmarried man with a disability. Anicca’s broker urged him to lie, suggesting he tell the landlord he was moving in with his family, but Anicca refused to compromise his integrity. In the end, he moved into a first-floor apartment, despite the lack of a lift. One day, during an illness, Anicca was unable to walk due to the cold, and had to crawl down the stairs, as his friend was unable to carry him. His neighbors saw him crawl but offered no assistance. 

Throughout the book, Anicca grapples with the idea of romantic love and the rejection that often accompanies it. He writes, “How could I expect someone to be in love with me? I would reject myself if we traded places... It’s just practical. I can’t blame people for not being attracted to me.” Amidst the fantasy of desire and the ensuing heartbreak, Anicca finds solace in being queer. He posits that queerness gives him hope about leading a happy life even when the heteronormative world tries to convince him otherwise. "Queerness gives me hope that I can find happiness...pleasure, intimacy and friendship outside the regimen of heteronormative relationships. That I can find companionship even if I am not attractive or my sexual organs do not work. That friendships will sustain even when families grow and people like me grow without families.” 

I found each chapter of this book more revealing and insightful than the one before. But the core of his argument is truly captured at the end of one of his earlier chapters where he speaks about how people in his life about him peeing in the dustbin at night. He writes, “No one mentions it, but they are all used to it. They are okay with it. And that’s a beautiful thing. It’s not just our responsibility to adapt to the situation. Everyone around us must adapt too. Only then we will be able to live a life of dignity and respect.”  

So much of the life of a person living with a disability goes into hiding the disability, masking the awkwardness that comes with the disability that acceptance of this kind feels radical. And it is all about acceptance, isn’t it? One can build all the ramps, make all the tech possible, but if one cannot accept persons with disability on their own terms, without caveats of what is “normal” then nothing else matters. But to accept, one must know. Anicca’s memoir is a good place to start to know a kind of life that has, for far too long, been systemically hidden.  

Link to publisher’s page – Penguin

Text and image by Pulakita Mayekar.