Myself Must I Remake
By Jayati Gupta
How does one learn to cope with one’s own body, participate again in one’s active life and negotiate societal perceptions when one wakes up to consciousness after three days to find oneself bandaged like an Egyptian mummy on a hospital bed? Why am I here and how did I make my way here? The traumatic memory, now of a little over forty years vintage, still haunts. It reappears more intensely on the Diwali nights when there are no fireworks for my family, only the traditional fourteen lamps lit to ward off an evil that has left a permanent imprint on my life as an individual and on those whose lives are and were entangled with mine.
Genetic or congenital disability generates its own problems of coping from childhood onward with one’s physical and social environment. The experience of coming to terms with disability after an accident that leaves a life-long impairment is different but equally trying, physically and psychologically. The difference hinges on a vivid memory of a past that was ‘normal’ and a present that marks an abrupt disjuncture with that perceived wholeness of mind and body. How does one make a lacerated body do all the things that it did before? One starts discovering one’s physicality anew – inability to perform certain tasks, restricted movement, and dependence on others. Conservative and normative societal reactions are like mirrors that magnify a disability because civil society in India is not adequately sensitized to it. In a poem titled, ‘Disabled’, the First World War soldier-poet, Wilfred Owen, poignantly captures the voice of a helpless soldier whose experience when he ‘threw away his knees’ shatters his own desires and dreams, and changes the equations that he had with women and men around him. I wanted to challenge this paradigm of loss, pity, and repulsion.
A trauma that maims and disfigures the body that has to be repaired and reconstructed to bring it back to a semblance of its former self is often, during the stages of rehabilitation, an attempt to come to terms with a sense of loathing and shame for the sheer physicality of being. Silence regarding the disabled and the lack of visibility of their presence in the public sphere in India is indicative of this attitude of guilt. The politics of disability in India is a politics of exclusion.
Post-1995, the Persons with Disabilities and Equal Opportunities, Protection of Rights and Full Participation Act came into force in India. Legislation alone is inadequate to address the everyday travails of the differently-abled who are often unable to avail of educational and employment opportunities due to lack of support systems, especially transport facilities, accessibility in public places and buildings and special assistive facilities in places of work or education. From first-hand experience, I can say that the minimum requirements – elevators and wheel-chair accessibility for the orthopedically challenged – are non-existent in most places, be these educational institutions, public buildings, shopping malls, government offices, libraries, cinema halls, theatre houses, and public spaces. The message that goes out is distressing, but clear.
More than fifteen years after the first pro-disability legislation, the continuing absence of an enabling social environment only signifies the reluctance of the public to engage with issues of disability. Activism in this domain remains confined to specialized enclaves of work with different kinds of disability where the borders between categories of disability are as difficult to transgress as the demarcation of the boundaries between the normal and the differently-abled. Therefore, inclusion in mainstream activities is not viable and totally restricted. It is not governmental initiatives or private enterprises that take their own policy decisions that facilitate participation of the disabled in mainstream vocations. It is individual survival instincts and assistance from family, friends and mentors with a positive, encouraging outlook that constitutes the enabling environment.
I shall use myself as a case study to consider problems of returning to the mainstream. In academics and education in India, progression is linear and scope for lateral entries is minimal. One applies for admission to a postgraduate course explaining the circumstances of the gap years that had ‘happened’ rather than been voluntarily ‘taken’, not mentioning that one was technically speaking a dropout as one had taken admission into a similar course but was abruptly catapulted out of it by an accident. One appealed for admission not because one had a right to higher education, but on compassionate grounds. There were no arrangements for persons with special needs and one learnt to adapt. And with severe mobility problems one turned to friends to get books from the library on campus or hail a cab when it was time to get home. Since this cannot indicate the contours of an enabling environment, one’s disability hits hard. To realize that one cannot do several things which others were doing induced moments of frustration as well as anger. Visiting the National Library, housed then in that heritage building with its majestic flights of steps, was out of question. With a career interspersed with medical interventions from time to time, one was eventually able to negotiate those steps. But the catalogues had to be manually searched and standing for hours trying to locate books or preparing a bibliography was a most strenuous chore. So, research was slow, the career path was full of hurdles and mental stamina was sometimes sapped for strength.
In the early years of coming to terms with disability, the challenge lay in attempting to prove that one could do all the things that a ‘normal’ person did. Getting into the mainstream meant that one was in a denial mode—trying to prove oneself as capable as others by ignoring reactions of curiosity, sympathy, pity or charity from the persons one encountered. Then with time, one’s perspective changed. I counted my blessings that included family support systems, economic stability, encouragement of friends and an inner resilience that enabled me to get a foothold in mainstream activities. It gave me insight to discover others whose experiences were lessons in patience, suffering, neglect that could be reconstructed as sagas of courage, achievement, and endurance, stories of those who battled with the greatest of odds and never gave up.
I wonder where I belong. There are these two worlds that are always posed as binary existences – that of the normal persons and that of the disabled. When I chose to get married, it was a surprise to all. I was accepted by my husband’s family for what I was. Societal reactions of curiosity highlighted again the dichotomy of the two worlds. A disabled woman is not considered ‘marriageable’ and new acquaintances assumed that I was married when I was ‘normal’. I have learnt now to live with an impairment that my now grown-up sons, sensitized since infancy to my physical condition, have come to accept as normal. Since I have left the past behind, I have forgotten the time when I could run and dance and climb, and walk. The limitations on my mobility are my new reality and I have learnt to accept my body without feeling any shame. The dividing line between what is normal and what is non-normal is a matter of perception. The way that I am now, I feel absolutely normal, though disabled.
[Jayati Gupta is Professor of English, West Bengal State University, Barasat, West Bengal.]