“I Embrace My Bitterness” - An Interview with Abhishek Anicca
Abhishek Anicca. Photo credit: Shivam Rastogi
In The Grammar of My Body, Abhishek Anicca shared his journey of discovering his disability and chronic illness. In an interview, Anicca spoke about disability in the face of capitalism, politics, and literature in an ableist society.
According to the 2011 Census, and a survey conducted by the National Statistical Office in 2018, 2.2 per cent of India’s population—approximately 31 million people—live with disability. Narratives about illness or disability often romanticize the survival story, pitting the disability as something that must be overcome to achieve triumph. Abhishek Anicca’s memoir The Grammar Of My Body (Penguin Random House India, 2023) asks the world to reflect upon its ableism and envision more inclusive futures. The idea isn’t to simply be inspired by the survival of a person despite adversities; it is, in fact, a call to reshape the world where people with disability and chronic illness live with dignity.
Anicca is an independent writer, poet, and spoken-word performer. He identifies as a person with disability and chronic illness. He discovered in his 20s that he was born with VATER syndrome which might have gone undiagnosed had he not slowly developed limp from muscle degeneration from scoliosis. He is also the founder of Dislang, an online magazine that publishes narratives by disabled and chronically ill people. His writings, articles and poems have been published on various platforms over the years.
In an email interview, Anicca spoke to The Chakkar about disability in the face of capitalism, politics, and literature in an ableist society. Edited excerpts:
The Chakkar: Thank you for giving me your time, Abhishek. Let me begin by asking, what led you to write your memoir?
Anicca: I think it was an organic process. I kept writing about my experiences of disability and illness to make sense of my life, or maybe as a coping mechanism. So, every time I was recovering from an illness, I found myself writing about my experiences. How I really felt. It started off mainly as a sort of documentation, but then it became an important part of my activism too. Putting it out in the form of a book was an extension of that.
The Chakkar: It can be difficult to accept living with chronic illness and disability. There’s a tendency to wish for things to return to normal rather than acknowledging the present. It can lead to frustrations and sometimes turn a person bitter. Could you describe your experiences of coming to terms with all the changes that have now become parts of your identity?
Anicca: That will always be there. A part of you wishes things were easier. Even when you embrace your illness and disability, there is always the longing to belong somewhere. Being ill and disabled can be very alienating. Even within families or society, it’s a difficult experience.
I embrace my bitterness. The bitterness is not a result of why this happened to me. The bitterness comes from why I feel so alone, why all the stigma, the disgust, the shame for having a body that doesn’t fit into the idea of the normal. Many able-bodied people have these experiences in different stages of life but the stigma and shame, and the alienation that entails is only reserved for us.
The Chakkar: There are times when one feels that the body, mind, and willpower are three different entities, and that our job is to align them in order to get through the day or get any amount of work done. Do you have such insufferable internal battles going on? How do you deal with them?
Anicca: Yes. There is always a battle going on. Lots of pushing and shoving. But over the years I have started respecting all three. I don’t let one dominate over the other just to create an arc. There is no overcoming. No pushing my body. Of course, it leads to missed opportunities and sometimes leads to panic about finding work in the future. But I think that’s part of life now. I think the only way I cope with it is to set small goals, to ask for help whenever necessary, be honest to those who give me work and most importantly, [and] constantly readjust my ambitions if I realize it’s too much for my body.
The Chakkar: You lay bare your life with utmost tenderness in the book. You speak up where you need to, you advocate for the rights of disabled people, and you advocate for the expression of love and desire. And you continue to remain soft in your approach to the world. Could you reflect on this and take us into your inner landscape?
Anicca: Well, the inner landscape of desire is always tender. For me, it never wants as much as it longs. Everything is part of my story. This disabled body, the need to speak up for disabled rights or the search for love in this world. All of them are part of my core existence now. You have to be soft. To want love, you have to be an activist at times. To be an activist, you must have love within you. Rage can carry you only so far.
My only yearning is that the world gives me some love, for I have a lot of love to give. Not only individuals, but society as a whole. There needs to be more love. My own quest for love and expression of desire is just an appeal to the world to be less cruel and alienating and instead be more kind and accepting.
“I think all disabled people are like poems. Beautiful, unique poems, with a different grammar. Just because many in the society are not able to understand these poems, they don’t see their real value. But they make life beautiful for many around them and teach society to be more kind, empathetic, and equitable.”
The Chakkar: Do you believe that the onus of educating the healthy and able folks lies on the sick and disabled?
Anicca: We don’t have a choice. If we don’t do it, who else will? Although we don’t owe them anything. We don’t owe them knowledge or explanations. If only they tried to build a bridge. Right now, disabled people are the only ones building a bridge. Sometimes, through the language of rights, at others using the language of vulnerability.
The able-bodied world likes neither, and prefers inspiration porn, which they can just use for a dopamine kick. Plus, it makes every disabled person who doesn’t fit into the category of inspirational easily disposable or ignored. We don’t want that. One hopes that things will change but it’s not happening at a pace we would like it to.
The Chakkar: One of the powerful images early in the book is the incident of being stuck in traffic and struggling to make your way on your feet to your place that was nearby. Not only that but also people’s indifference to help you on the road. Tell us about coming to terms with such indifference and then fiercely talking about it in ways that make able-bodied folks think and act on the matter.
Anicca: Well, you go home and you cry. Cry not for yourself but mourn the indifference of this world. A world where no one wants to hear that they are ableist and definitely no one wants to acknowledge that they are complicit in the exclusion of disabled and ill people from their lives. A world where no one ever says I don’t love you because you are disabled, and yet they don’t love you because you are disabled. I mourn that world. And then, I move on.
There is no other option for us, is there? We have to move on, continue working for our rights, build bridges and enjoy our lives as much as we can. I am grateful to be alive. But I also want to live life to the fullest. I will fight the ableist world for that. I will do it through poems and essays. I will do it through walking in public places, my body all over the place. I will do it by dancing and singing at a protest. I will never be invisible even if a part of me wants that at times.
The Chakkar: You question the ableist notion of growing older and independent and advocate for interdependency instead. The idea of success—living alone, being able to provide for self—is ableist, too. Could you please elaborate on this?
Anicca: Society defines individuals in terms of productivity. So, for them, most disabled people are useless. But are they really useless or they are useless in ways that capitalism defines productivity? Independence is at the centre of an individualist, capitalist society because it makes it easy for society to calculate your value to the society. What productivity does a poem add to society? Maybe nothing. Does it make our life better? Definitely. So, there is immense value in it which none of the parameters for productivity can capture.
I think all disabled people are like poems. Beautiful, unique poems, with a different grammar. Just because many in the society are not able to understand these poems, they don’t see their real value. But they make life beautiful for many around them and teach society to be more kind, empathetic, and equitable. A lesson that society needs now more than ever.
Interdependence is beautiful and the idea of living in an interdependent community with fellow disabled and ill persons will always be my goal.
Although right now, with the kind of society we live in and the hatred going around, it seems like a pipe dream.
The Chakkar: Our friends are often well-meaning and supportive. They try their best to be empathetic. Sometimes what comes across is not support and many times empathy isn’t enough. What does support look like to you?
Anicca: There are limits to empathy. They can never experience what we experience. So no matter how much they empathize, they don't know what kind of strength it takes to be totally vulnerable and yet hold yourself together.
It is simple. Listen to us. Talk to us. Be open-minded. Share space with us. Do everything that you might do with any other able-bodied friend you are close to. You can be a great person and still be ableist. Not because it’s your fault, but because society is like that. And we haven’t reached a stage where people are aware of their bodily privileges. This is a beautiful opportunity for both of us to learn and unlearn.
Yet, we are constantly afraid. Fear prevents us from being friends. It codifies our behaviour with each other. Fear must end.
The Chakkar: You convey the futility of being an inspiration in the following lines:
Pardon me
But is getting inspired
A metaphor for getting an orgasm?
You get one
And you move on
Then browse again
Until you get another one?
“Inspiration porn is a way for the able-bodied world to create an arc for us and in turn to avoid our day-to-day struggles. I think some inspiration would have been good for young disabled persons. But, the way it is commodified and packaged makes it problematic.”
Where do you place your memoir in the larger body of illness and disability memoirs, vis-a-vis the perception of inspiration-porn?
Anicca: As I said, for me inspiration porn is a way for the able-bodied world to create an arc for us and in turn to avoid our day-to-day struggles. I think some inspiration would have been good for young disabled persons. But, the way it is commodified and packaged makes it problematic.
I often joke that there is definitely an award for every disabled person in India, just for being disabled. I don’t want to be awarded for just existing or living my life. It doesn’t add anything. It, in fact, makes us forget that among the disabled, all of us have different class, caste, and gender, which shapes our journeys.
I don’t want my book to be appreciated just for being a book about disability and illness. It should speak to you. The writing should resonate. I hate tokenism and I never wrote the book for it to be just a disability book. It speaks to the readers on so many levels. They should be ready to listen. That’s all.
The Chakkar: Lastly, what are you currently working on? Will we be seeing a separate collection of your poems anytime soon?
Anicca: The poems have to wait. As every publisher will tell you, poetry doesn’t sell these days. Anyways there is so much poetry for free out there. It’s difficult. I will try to find ways of putting them out in some form in the years to come.
But right now, I am switching to fiction. I tried writing fiction a decade ago, and although the novel didn’t really work, it taught me a lot about writing. Now is the time to put all the writing I have done into practice and merge it with some real-life experiences. Maybe a horror novel in rural Bihar. The book will find its trajectory in the course of time, hopefully.
I am primarily a writer, so I will keep writing and trying new things, and putting them out. As for the poetry collection, I really hope it takes shape in the years to come and the readers have something to savour.
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Akankshya Abismruta is a freelance writer and book reviewer. Her reviews are published or are forthcoming on Scroll, Purple Pencil Project, Feminism In India, Women's Web, and Bookish Santa, Asian Review of Books, and Deccan Herald. You can find her on Instagram: @geekyliterati and Twitter: @geekyliterati.
