There is an old Buddhist story with resonances for the disability story we are about to embark on. When Kisa Gautami, the wife of a wealthy man of Shravasti, the capital of Kosala, loses her only son, she is overcome by a great sorrow and nearly loses her mind. Following the advice of an old man, she meets the Buddha, who tells her: ‘I can revive your child on one condition. Bring me four or five mustard seeds from any family in which there has never been a death.’ Gautami sets out to do his bidding, wandering desperately from house to house—only to find that there isn’t a single one which has not experienced death. This, to her, is a profound lesson on mortality, the fact that death is everywhere.
To look for a body that has never experienced disability, or for people who have never been touched by the disability experience, is akin to Kisa Gautami’s search for a family that had never suffered death. Chances are that we all know someone who has a disability. This person may have a disability from birth, may have acquired a disability later due to an illness or accident, or thanks to the ubiquitous process of ageing. This disability may be visible and obvious, or not. Our own bodies may have become, at various points, the sites of a disability—due either to the natural process of ageing or an accident. There is another issue we might want to keep in mind when it comes to thinking about people with disabilities. Sometimes, we hear that someone has ‘outgrown’, ‘overcome’ or ‘compensated for’ a disability. But for every such ‘positive’ account, there are also people who can’t or don’t ‘outgrow’ or ‘overcome’ their disabilities. Given our culture’s preference for ‘success’ stories, the only people with disabilities we want to hear about or hear from are the ones who have ‘made it’ in some way. The narrative of overcoming is, of course, a powerful one, and not to be discounted. However, this should not be the only narrative we pay heed to. What we should be asking ourselves is: What of the ‘non-successes’? What of their lives? What are the cracks through which they have fallen? How have they been failed? What value do their lives hold inherently? What of the lives of those who live with disabling pain that prevents them from leading a full life?
The thing about disability is that it could happen to anyone. Age or accidents could disable us in some way. We are unlikely to inhabit able bodies throughout life. Our bodies and our minds are in a constant state of flux. We just don’t see it. And so, we tend to think of disability as another planet of experience altogether, something that has not, will not and should not happen to us.
Disability is a no-man’s land. Mainstream medicine, by its very nature, is focused on the ‘treatable’ and the ‘curable’. Chronic illnesses, pain and disabilities are often impossible to ‘treat’ or ‘fix’. Poorly understood and poorly researched, these bodily experiences become nobody’s babies and tend to be locked away in tiny silos such as ‘special schools’ and the private space of the home. They are experiences no one wants to talk about. The body with a disability is a suffering body, a body we would do anything to avoid. And when I use the word body, I am also, of course, referring to the mind, which is inseparable from the body. But the good news is that the work of creating the vocabulary to describe and enhance the understanding of this experience is happening. Much of this vocabulary is being developed by people with disabilities or by people closely associated with them.
K Srilata was writer in residence at Sangam house, India, Yeonhui Art space, Seoul and the University of Stirling, Scotland. She teaches Literature and Creative Writing at IIT Madras. Her debut novel Table for Four (Penguin, India) was long listed in 2009 for the Man Asian literary prize. Srilata is the c0-editor of the anthologies The Rapids of a Great River: The Penguin Book of Tamil Poetry, Short Fiction from South India (OUP), All the Worlds Between: A Collaborative Poetry Project Between India and Ireland (Yoda) and Lifescapes: Interviews with Contemporary Women Writers from Tamilnadu (Women Unlimited). Her book The Other Half of the Coconut: Women Writing Self-Respect History was re-issued as an e-book by Zubaan in 2020. She has five poetry collections, the latest of which, The Unmistakable Presence of Absent Humans was published by Poetrywala, Mumbai in 2019. Her translations include Vatsala’s novels Once there was a Girl (Writers Workshop) and The Scent of Happiness (Ratna Books, 2021). A multi-genre anthology on the disability experience is forthcoming from Amazon/Westland later this year.