The Grammar of My Body review: Living with disability, desire and dignity

Anicca was born with an imperforate anus. He was taken into surgery the very next day. He suffered from various health conditions all his childhood. He looked at himself as “unlucky, sure, but not different.” He owes this to his family who never treated him any differently. It was only later in life, in his 20s, that he discovered he suffers from the VATER syndrome. It is a defect in which a person has Vertebral defects (scoliosis), Anal atresia (imperforate anus), and Renal anomalies (ectopic kidneys). Anicca suffers from chronic Urinary Tract Infection as well as erratic bowel movements that often forced him to cancel plans at the last minute.

As he grew older, he developed a limp when he walked as the muscles in his lower legs began thinning, and also the curvature of his spine became visible. He was born with these defects and yet, it wasn’t mentioned by the doctors or family members. Hence, his memoir becomes an intriguing case of a person with disability coming to terms with ‘becoming’ disabled. From a person who loves to dance at parties, he becomes the one who cancels plans at the eleventh hour, pees in a dustbin at night, wears diapers for outings and sometimes has had to lie in a room with his shit scattered on the floor.

Finding Freedom and Acceptance

His disability widens the gap between the home and the world. At home in Darbhanga, he is taken care of by his mother who is devoted to him. When he lives alone in Delhi, neither his flatmate nor his house help mentions his use of a dustbin to pee or used diapers in a black bag in the corner. He says, “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.”

In the world outside of home, people are trained, perhaps since childhood, to look away from disability. When a child stares, the parents command in whispers to look away. The act of looking away is not driven by respect but rather by discomfort. When a disabled person falls, no one comes to help them get up. If people look at them, then their gaze is accompanied by pity or disgust. They feel sorry for you as if you are no longer a person but a thing.

And this begins to shape the experience of the people with disabilities. There’s tenderness in Anicca’s words that informs the readers that this isn’t a new experience. The words are calculated, they are forgiving. Underlying rage, if any, gives the ableist world the benefit of the doubt, urging it to do better, to show up better, and to create space at the centre.

Anicca finds solidarity in the margins away from the world dominated by ableist male experiences. He bonds with women who are experienced in holding their pee during field trips, women who understand his ongoing battle with chronic UTI. He finds freedom and acceptance in queer spaces for they go beyond the imaginations of heteronormative people. His desire is not met with shame in these spaces, his desire — disappointing the ableist mindsets — exists vis-a-vis his disability.

The Pangs of Love and Desire

Desire. To love and be loved. Does it ever go away? Anicca reflects on love, more often than not. On occasions, he holds on to the hopeless romantic in him who believes love is the answer to all yearnings. He doesn’t stop from revealing his experiences as he grows older, where orgasms seem far more satisfying than a love he hasn’t yet experienced. And then, there’s the work that a disabled person must do, explain themselves and their disability for the other person to understand them, accept them, and make love to them.

His reflections on desire bring forth an understanding of the life of a man who is constantly trying not to blame his disability for the lack of love in his life but often comes back to the question: Is it my disability? How can it be when many able-bodied folks spend their lives without love? But the power structure is such that it “turns even a disabled, ill and fat person into an ableist, fat-shaming individual at times.”

A Place to Call Home

Drenching his experiences with vulnerability, laying bare his shame, walking naked, he tells the episode of getting a disability certificate, trying to get on flights that deny his entry, accessing hospital beds, feverish nightmares, and even the tales of support by his empathetic friends, adding that empathy cannot always be enough. There is a need for efforts to understand so that the person with a disability is not burdened with the onus of having to explain himself for his needs to be met.

He struggles to get a ground-floor flat in Delhi because people are brutal and uncaring, and brokers advise him to lie to a person who by default shares his truth. Despite the validation and reflections, there’s a collective smile in the motif that fairy lights have become, the warm light of a desire to live against all odds.

Upon finally finding a place to live in, Anicca writes: “That night, I decided to celebrate life. In the middle of the night, I was up from my mattress, looking for the thing that would convert this messy apartment into home. I took it out and wrapped it around the window overlooking the small balcony of my one-room apartment. Fairy lights on my window were not just a source of illumination but a declaration to the world that I was ready, ready to live like and make this place my home.”

Raging Against the Dying of the Light

The Grammar of My Body is an act of activism even though Anicca doesn’t claim it as such. For a fellow chronically ill person, this is a rage against the dying of the light. The poetic flow of his prose bares it all. It invites the readers to reflect on their ableism, to create a change, to bring the lives of people in the margins to light, and to do so without turning it into inspiration porn.

Anicca refuses to become an ephemeral icon of inspiration before the people move on to the next icon and, in doing so, he speaks for a significant part of the population who simply want a space for their lived experience without the guilt of not being as productive or independent as the able-bodied folks.

Reminiscent of My Story by Kamala Das, this page-turning memoir depicts the life of a person who is betrayed by his body, caught in the conflicts of desire, and claiming his place in a world that has a long way to go in treating its people with equity. Stubbornly, with all the softness gathered over the years shaped by betrayals and hope. Anicca’s restraint, juxtaposed with his vulnerability, makes it a delightful read that binds the reader into taking pauses to breathe deeply, consciously, while also wanting to move with urgency to see how the words slip over to the next page.