Reflecting on my Memory: My Life with Disability
By Sameer Chaturvedi
I am a Brahmin, male, heterosexual, and disabled. I ask myself which of these identities played a dominant role in shaping my life. I feel my experience of being disabled has had a long-lasting impact in determining my life course. At this juncture I have to admit that I am critical of the human rights approach to disability, which suggests that disabled people must resist an ableist society. At the same time, I am aware that rejecting the human rights approach to disability altogether would be a grave mistake as it tries to create consciousness that disabled people are as human as their nondisabled counterparts.
Writing about disability is a tough ask. The old maxim that says personal is political seems like an oversimplification of the life of an individual. And more so, I think there is a need to reflect on the “politics of disablement” that most disabled activists/scholars engage with. This article presents my personal thoughts and observations about what it means to be disabled. I am not claiming that it would present what every disabled person goes through in India.
For me, the phase from 1992 to 1999 was one of the best phases of my life. Although I did not undergo regular physiotherapy sessions there, I did well in schools only in patches but still I was happy. Personally, yes, there were times where I lamented on being “langra” but my taking part in indoor as well as outdoor activities never gave me enough time to think that I lack something in my body. Everyday stuff occupied most of my time. I must confess there was or is a deep rooted desire to be free from, disability, handicap or whatever one wants to name it. I used to tell my mother that I pray to God, “Mera paer thik ho jaye” (make my legs normal).
In Lucknow, my twin brother and I did schooling together as these were just the initial years of education. If I remember correctly, I was made to repeat nursery and my brother was promoted to kindergarten. It gave way to harmless teasing that is common between siblings. There were times when I tried to boss him; for example, I took his help in throwing my calliper as I did not want to bear the pain of wearing it. In fact our sister, who was of same age-group, was party to all that we did: from watching mythological television shows to Pink Panther, we did everything together.
When Papa got transferred to Banaras, my sister and twin brother got admission in the same school. The Principal of that school was sceptical about giving me admission. I was subjected to similar experience before as well; my parents were asked, “Why you guys are not thinking of sending him to special school?” to which my parents resisted. Most of the schools asked, “What if he falls down and injures himself? Who will take responsibility?” It was a school in a neighbourhood named, “Little Kingdom”, where I did schooling for one year and did well in my studies. The remarkable feature of the school was that the books were in English but instruction was in Hindi.
Eventually I got admission to St Mary’s School. It was one of the prestigious schools in Banaras. If I remember now there were times when I missed my brother being around for psychological support, as there were times I felt lonely at school. Lectures were mostly in English, which was a completely new experience for me. I also could not handle the pressure of syllabus, books, homework, class work, projects, and tests and failed in class three. I was probably not mature enough to take the pressure. Also, I feel when a student does not get a way out s/he might tend to run away from the problem.
The teacher in charge suggested that I should be shifted to a Hindi medium school as it was considered that I would adjust quickly to that atmosphere.
There also I took time to adjust to the books of the Uttar Pradesh Board. I used to wait for my father to help me with my homework. Once my father said that he was worried about whether I would be able to cope with education in the future at all. Gradually, I began to gain confidence in myself and started doing homework on my own.
Coming back to my togetherness with my brother, my mother used to send me with my brother to visit a friend’s place to play. I also started going to a nearby park, with my brother to play cricket. Both my twin brother and I played cricket, hand cricket, varied versions of football and tennis with a cricket ball.
When we shifted to Noida, things changed not only between me and my twin brother but also socially. 1999-2000 was the age of internet boom in India. People became more interested in chatting and e-mailing rather than investing energy in playing a sport. I know all his friends who came to our place during birthdays. There were people of the same age-group in our locality who were regular visitors to our place and became friendly with me.
My social isolation started there. I hated the new place. I found people to be self-centred and not companionate towards each other’s needs. Whenever I fell down on the road, I did not find anybody who would help me get back on my feet. Gradually things started changing as people started lending a helping hand.
In comparison to Banaras, my circle of friends in Noida was not that great. The first remarkable change occurred when my brother started learning to drive a scooter and I was not able to learn it. Also, I was against making any kind of arrangements that would assist me to do the things that others were doing.
It was I and my twin brother’s first birthday in Noida. His friends came and took him to McDonald’s. That day I told myself that this was how things would be. It was the natural course of life, but, yes, there were tears in my eyes. My relationship with my brother changed over time. Somehow I had thought that these things would happen to me at the time of childhood only. I remember writing a few pages on my inability to do things when I was about ten years old. But one thing that I had not thought of was how my brother, when he was in class eleven, started asking for privacy, to be alone and not in the midst of family. The family was not appreciative as it was thought of as going against our family ethos of collectivism, this need to have individualistic aspirations, of wanting to spend time outside with his friends and not at home. My sister also seemed to have a good time after graduation, having started jobs and so on.
Both my siblings started looking out for jobs when they were in school. If I remember correctly, I had mixed feelings about this as I was not party to it.
I remember crying while watching the film, Koi Mil Gaya, where in one scene, Jadu (the alien), through his magical touch helped Rohit, the disabled character, to become ‘normal’. In this film, Hritik Roshan played a role of an intellectually disabled young man, who loved to enjoy life to the maximum. Yet he was subjected to humiliation many a times which makes him ask his mother why God had made him that way. And then Jadu arrives, magically, as the name suggests in Hindi, to heal him. God answered his prayers. I cried because probably I wanted God to do the same for me.
Around 2002, I developed anxiety issues which hampered my walking. Many times I overcame it but it had a tendency to return and, rather acutely. A psychologist explained that this probably happened because I had poor self-image and this had persisted for a long time. Yes, probably the life I have led so far testifies it.
I am not sure how much the negative portrayal of disabled people in most of the Hindu religious texts have had a role to play in making me indulge in self-pity. When I used to watch the television shows of Ramayana and Mahabharata as a kid, I did’t think I was conscious of the fact that the evil characters were depicted as disabled but I read about these portrayals later in the disability studies literature. Being disabled does not mean that every moment of life is hijacked by a lamentation of the physical condition.
I am interested in academics, I discuss with people both offline and online, the different definitions of disability which have given me a positive sense of self and about many other issues. Life is not one-dimensional like the models of disability. I want to be “in love” someday. I believe in the motto: “caste, no bar; religion, no bar”.
PS: I Love you all and, reflecting back, I can say that this is probably how sibling life is in most of families. It is something I look back on and laugh at now.
Sameer Chaturvedi is a Ph.D. Scholar at the Centre for Study of Social Systems, School of Social Sciences, Jawaharlal Nehru University, New Delhi. His MPhil dissertation was titled, “Disability” Between Models: A Sociological Exploration (2015).
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.
What an inspiring man
Sameer you are one of the most cheerful and enthusiastic persons I ever met. I remember you taking your brother to task under the ‘Ibtida tree’. You are a gem buddy. All the best!
Truly Amazing !!
You have highlighted sibling relationship and how it changes over a period of time. Very good personal reflection!
This is a wonderful and reflective personal narrative Sameer that is also philosophically and theoretically grounded. Thank you for writing this and sharing with us. Keep writing 🙂 Best wishes
Dear Sameer bhai, I really like your positive attitude……You are an example for those who complain constantly about their suffering…You are most definitely a very articulate intellectual. Nature has its own way of compensating the weakness or the handicap we face in life. We are all inequal in health, appearance, intelligence and what not; we have to make the best of what we have and we can circumvent any physical obstacles we may have to face. And believe me, many of those who have a disability are truly those who are blessed with extraordinary powers to overcome all the obstacles in life. You will be in my thoughts…..and one day we shall meet….
By the way, I am considered a handicapped person with an ailment on both shoulders by the labor department and enjoy some privileges like priority in any queue or fro any seat..in public transport… ….i have fought and won my battle against sleep apnea with a 25 per cent weight loss (15Kgs) and no longer have to have an pump attached to my nostrils to help me breathe during sleep after six years of tortured breathing and lack of sleep. I have to maintain my weight at less than 62KG which I am succeeding, but have to monitor my weight every day. i avoid the biggest legal and addictive posion “sugar” and no or less salt in what I eat…..My doctors are happy with my progress. i have learned to be more disciplined… Please keep writing….Writing is also one way of looking at the handicap in the eye and telling it nossir you will not put be down.
Keep it up