Every disabled person in this country has to become an activist, says writer and poet Abhishek Anicca over the phone from Delhi, where he has just landed from Patna where he lives. “Go to an ATM, you find that it is not accessible to someone in a wheelchair or using a crutch. Complain to the officials, put it out on Twitter. Go to a cool, independent bookstore and find that it has a really steep spiral staircase, which you have no hope of being able to climb. Complain, put it on social media, wait,” Anicca says.

After a pause, he adds: “This is something you shouldn’t have to do. It is humiliating. It dehumanises you. It makes you feel like your only identity is as a disabled person. But then what can we do, we live in a society shaped by ability privilege.”

Anicca’s recently released book, The Grammar Of My Body, is a memoir of living with disability and chronic illness, and a moving diatribe against a world that overlooks this privilege. A lyrical yet unflinching account, it is necessary documentation of being an Indian person with disability who also values their independence and doesn’t want to be surrounded by the oppression of care.

According to the 2019 National Statistics Office report on disability, an estimated 2.2% of India’s population (or roughly 31 million people) lives with some physical or mental disability. More accurate numbers are simply unavailable—earlier this year, a Parliamentary standing committee on social justice and empowerment called out the Union government for failing to accurately estimate the current population of persons with disabilities (PwDs) in the country. The committee pointed out that in the ongoing sixth round of the National Family Health Survey (NFHS), conducted by the Union ministry of health and family welfare, disability related questions had been dropped.

With the United Nations-observed International Day of Persons with Disabilities (IDPD), marked on 3 December every year, Anicca’s book comes at a time when we have even overlooked counting the number of disabled in the country or painting an accurate picture of the kinds of disability people live with. Born with VATER syndrome, Anicca, 36, became aware of his exact diagnosis only a few years ago. The syndrome, also known as VACTERL association, is a complex condition with a cluster of irregular congenital defects that encompass several parts of the body, VATER being an acronym for the affected parts, including the vertebrae, anus, heart, trachea, esophagus, kidney and limbs. Although Anicca was born with missing pathways in his intestine, underwent surgery the day after he was born, and lived with recurring urinary tract infections, some of his symptoms, such as muscular degeneration, didn’t become aggravated till he was older.

“Even in college, as I fell ill year after year, sometimes with heartbreaking consequences, I never saw myself as different. Unlucky, sure, but not different,” he writes in the book. “That inadvertent lie that I held so close to my chest broke me many times. Being part of the college theatre group, when I went for auditions, I was told that I would not be cast in the plays because I ‘fell ill’ frequently. That year, as other people fell ill, too, with dengue and other things, and had to be replaced, I sat on the sidelines…”

Going back to the flight he took to Delhi the previous day, Anicca recalls his preparations that took several days. While booking his ticket, he had to make sure he got a seat in the first row because he needs the extra space. He packed over two days, because his movements are slower and he has to pack a lot of essentials. Once he got to the airport in a cab, he called an airline officer he knows and arranged to have a wheelchair brought to him.

“I now have many numbers saved because I have faced situations where they have refused to let me fly on my own or without a medical certificate,” he says. “Once they said there were no wheelchairs and I said that’s not an option for me. Later they arranged for one but after a huge tussle—I had to tweet about it and some actors retweeted it. A lot of activism that disabled people have to do in this country is forced on them.”

How does a disabled person not define themselves by their disability? It was a question I had prepared to ask Anicca, but over the course of the conversation I understood that it’s the world that won’t let him be anything else. “Even things I write about, including dating, I would like to imagine that I am not defined by it. I have had days, very good days, things have gone very well. And then I have met people who have looked at my body, and have heard my story and it’s just too much for them, you know?” he says.

This is why what he calls the “inspiration porn” business exists—people want to make disabled people heroes who have overcome hurdles and achieved great things. “It makes them feel good about themselves, it makes them believe they can overcome barriers, they can become great. But they don’t often acknowledge the realities of what being disabled means,” says Anicca.

The world also has a limited idea of what constitutes disability. Anicca recalls how, even though he had lived with severe and debilitating conditions all his life, it was only when he developed a limp that people began acknowledging his disability. “I had gone to TISS (Tata Institute of Social Sciences) for an exam, and a professor said ‘why didn’t you apply under the PwD quota? I was taken aback, because till then, even I had not fully acknowledged it,” he says. “I realised it had affected everything—the way you liked people, the way people liked you or loved you, or didn’t love you, all of that was shaped by disability. But the realisation is retrospective. In the moment, you can’t, you don’t see yourself as less of a person.”

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The Grammar Of My Body: A Memoir By Abhishek Anicca; Vintage Books (Penguin Random House India); 256 pages, ₹499.

In the book, Anicca doesn’t spare either himself or the reader intimate details of his life, from living in squalour because his legs refuse to work and he can barely move from bed to fridge to get food, to wearing adult diapers while leaving the house. It’s embracing a sort of radical vulnerability. “The idea of writing is also to be very vulnerable, very open. Because there’s no point in creating a narrative, an arc, that I have survived. Yes I have survived, I have written last letters to people… As a narrative, it’s fine. But all that you actually experience is pain. And of course you have to rely on the kindness of others, which can be a very heartbreaking thing in itself because what if people are not kind?”

It is perhaps then that the idea of being kind to oneself takes shape. During the covid-19 lockdown, Anicca started making videos of himself doing things around the house, looking in the mirror. Shot in black and white, often from camera angles that feel surreal and bizarre, the resulting 18-minute film, Dear Aphrodite, available to watch on digital art collective Reframe Online, is a journal of a life.

As a preface to the work, Anicca wrote: “More than anything, Dear Aphrodite is the process of looking at oneself, asking important questions, both personal and political. It is not a document of self love. On the contrary, there are too many things which hint at self hatred. But maybe there is a thin line between the two…”.