Perforations of a Disabled Identity in Childhood and Adolescence

by Shilpa Das

Drawing by Manali Jhinka Roy of the face of a young woman. One eye closed. She is surrounded by pejorative words used to refer to disabled people

I was five years old when I first became aware of my disability. Or should I say of my impairment? Of my polio-afflicted left leg. A friend from the neighbourhood, seven year-old Ashok, exclaimed as we sat next to each other, “Hey, your left leg is shorter than the right one!” The hazy memory I carry of the moment is that I forsook my slouch, sat up straight, and sized up the legs against each other, wondering what difference he was talking about for I could see nothing. Truly. I do remember sitting there looking at my legs for a long time before I walked home. It was not a hurtful moment. I don’t recall asking my mother about it. Perhaps I did. I do not know.

The next sharp memory is of the time I was about eight. This time at school. A classmate sidled up to me in the lunch-break and piped up, “You know my mummy was saying that people who commit dreadful sins in their lives, become blind, deaf, mute or crippled in their next birth. Your leg is not your fault. It is the fruit of your karma that is responsible for your predicament. That is what our religion says.” This time I remember being taken aback. Surprise turned into pain the next instant. I felt like a criminal. Besmirched. Tainted. It felt like being pushed off a moral high ground. This memory remained with me for years through my childhood and adolescence, successfully managing to recapture the exact slash of pain each time. Was God a malevolent rogue who delighted in sending little children their just desserts, I wondered. Did not this God have better things to do than throw such thunderbolts at babies?  ‘Here! I have blinded you.’ ‘There! I have twisted your limbs!’ Hard to believe, all considered, in light of how I perceived godliness from the vantage point of eight years. The other point about this argument that bothered me sometimes over the next several years was why should this God inflict such a bodily condition (and I considered it terrible at the time) at me in this birth for some heinous crime I may have committed in an earlier birth? The logic simply did not fit.

Drawing of a teacher talking to his class. A caption bubble from his mouth reads, 'Disabled and hunchback people are shrewd and cunning, you know.'A few years later, at age twelve perhaps, and again at school, I had yet another degrading experience that superseded the earlier one as an indelible memory. The arts and crafts teacher at school remarked casually in class one day, “Disabled and hunchbacked people are shrewd and cunning (luchhaa) you know. Have you heard of the evil hunchback Manthara in the epic Ramayana? She was the one responsible for all the tragedy that befell Lord Rama. You cannot trust the disabled. They are as untrustworthy as menial servants.” A searing flash of agony passed through me. I felt humiliated and sat head bowed not having the courage to look up and around, anxiously wondering whether my classmates had made any connection of disabled people with me. I was sure they had.

The fourth negative experience was at age 25. I was about to be engaged to the man I loved. We had gone to my paternal village in Odisha to seek the blessings of my grandmother and other elders in the family before we left for Bhubaneshwar for the engagement tripped-by-manali-jhinka-royceremony. Dressed in some sort of finery, I was walking along a long verandah at our ancestral home one afternoon when suddenly I lost my balance or slipped and fell. Am used to falling sometimes so it was business as usual and thinking nothing of it, I stood up brushing my clothes. No one was around. Or so I thought. Someone laughed. Aloud. It was a woman’s laughter. It was an aunt’s laughter. It was at my expense. No one had ever laughed at me. Or at least to my face. She came up to me but did not ask how I was. She was still laughing. And I was at a loss as to how I was expected to react. So I nodded at her and quickly went into my grandmother’s room sitting by her side lost in thought for quite some time.

Each time in my life the sense of being (or made to feel) different or lesser than others came not from within but from without. Disabled people face experiences such as these throughout their lives. Many speak of name-calling too. We may be called ‘grasshoppers’ (titighodo in Gujarati) because we limp, lurch, sway or hobble or as ‘Soordas’ (a blind bard in ancient India but now more of a derisive term often associated with beggars) because we cannot ‘see’ with our eyes. In Gujarat, as I grew up, I heard terms such as kaaniyo (the one-eyed one); baando (squint-eyed); aandhlo (blind); bobdo (speech impaired); behromungo (deaf-mute); lulo (having an impaired hand); langdo (one legged or mobility disabled). These never seemed to be simple terms borrowed from a language in order to be used to name certain types of people. Rather, they seemed to be pejorative, imbued with negative devaluations and were sometimes potent cuss words that were hurled our way.  The able-bodied world blithely affixes labels on us as being deviant or devious, pitiable or contemptible which erase all other attributes or capabilities we may have. And we, the disabled, internalise these labels through the socialisation process and spend a large part of our lives looking at ourselves through their eyes perceiving ourselves as they perceive us. We are made to feel small. We are made to feel flawed. By the ubiquitous stare. By thoughtless remarks. By culture. By society. And this colours our soul, the very core of our being. This becomes our identity. At least it did in my childhood, and the somewhat muggy years of adolescence and teenage.

Mythology and folklore fuel the cauldron of disabling our developing identities and selfhood. Inferences derived from disabled characters in Indian mythology, the stories of the Gods (Puranas), and especially, the classical epics Ramayana and Mahabharata (where, in both instances, ‘evil’ disabled characters set into motion the sequence of tragic events that befall the noble protagonist) and folktales replete with stock disabled characters prevail over the popular imagination. The age-old Hindu philosophy and moral law of karma shaped over millennia that prevails in India seeks to explain anything that happens in our lives as the predetermined effect of our past actions in an earlier life. Karma is believed to be immutable and to prevail through the samsara or eternal course of births, deaths and rebirths.  As a result, the rationale offered for any life at the margins (including disability) is the pre-ordained scheme of things— the vortex of one’s fate, and hence, hopeless. Many disabled people and their families in India also, therefore, subscribe to and seek solace in this deeply entrenched principle of karma. This is the very belief that my classmate at school at age eight was trying to impress upon me.

Popular cinema and mass media in India are also liable in portraying dehumanising depictions of disability through the perpetuation of disability-as-disaster and disability-as-a-burden narratives through characters hobbling about on crutches, crawling on the ground or being wheel-chaired around evoking sympathy or pity or by depicting disability as diabolical through villainous characters. These pitiable or evil characters are always mere caricatures. There were also a few films that fed the other loathsome disability-as-overcoming narrative where the disabled character becomes an exemplar of superhuman attributes and a source of inspiration to both the disabled and the non-disabled world. ‘Despite his disability he became a great cricketer.’ ‘Despite her disability she became an accomplished and feted dancer.’ This is the ‘super-crip’ phenomenon at work with hyper-masculinisation and hyper-feminisation thrown in for good measure. The more you set yourself as an example for others, the greater your acceptability quotient in the non-disabled world. You are always made a lesser version of yourself by culture. With much perseverance, you are permitted to be a greater version of yourself, but the irony is that you are never allowed to be just yourself.

Growing up on a steady dose of Hindi cinema, I particularly noticed the representation of disabled women in Hindi films. They were not likely to be the lead female protagonists. Usually, the virtuous and innocent sisters of the male protagonist, the hero, they were consigned to being in wheelchairs, shuffling about on their crutches and protected and loved by their families and especially, the brother. He’d sing to her, ‘I can bear anything that happens to me in life but I cannot bear to see you cry.’ They were depicted as cheerful, amiable and ‘brave’ about the catastrophe named disability that had befallen their lives, accepting the inevitability of a life of single status with a smile or a tear. Sometimes, villains raped them with the heroic brother seeking vendetta for the ‘dishonour’ brought to his sister and their family. In only a handful of films, was the female protagonist disabled. In such cases, she was usually blind. A very beautiful ‘but’ blind woman whom the noble hero would ardently woo with the promise of showing her the world through his eyes. The camera would often zoom in on her kajal-lined and made up eyes. Eyes that are nowhere like the eyes of the blind. The hero would leave no stone unturned to consult doctors and other experts in order to bring about a cure for her blindness. In the end, in these films, a surgery by an expert doctor would miraculously restore her eyesight thereby winning parental approval on their able-bodied union, and affixing a seal on their future marital happiness. The lesson that young disabled girls take from this is that the higher your mark on the gauge of ‘normalcy’, the more your chances of being desirable and desired, of having romantic relationships and further, of acquiring a groom in the marriage market. They find themselves nowhere in the reckoning.

Growing up, I never saw disabled characters in films and went about their lives like everyone does. Who were as ordinary as the person next door. Who queued up to take a bus, went to college, went to work, dated, got married, had children, and enjoyed living in the most mundane ways of our lives.  And hence, I had a sense of unease and utter despair when I saw how disabled women were portrayed, a growing dissatisfaction with such negative representations of disability as well as a gradual alienation from them. I recall myself internalising some of the tragic attributes of these young disabled women characters in films and the sad songs that often went with them until better sense prevailed and I outgrew these.  The deleterious effect on and the damage to our self-concept in our formative years through such mass media can only be imagined in a country where cinema is often called the opium of the masses.

Some of us are able to extricate ourselves from these internalisations and thick glutinous webs of ignominy and form a positive self-concept. We are lucky and may be privileged in several ways— perhaps having a loving and supportive home and community environment, a good and illuminating education or financial means to ameliorate the physical experience of disability. Others are not. The circumstances of their lives undercut any chance of a dignified passage through the vagaries of their lives and they are insensitively disabled by society often enough to have severely low self-esteem.

School experiences assume great significance in disabled people’s lives. It was my academic performance and extra-curricular participation at school that gave me an affirmative sense of identity almost from the very beginning. No small role in this was played by almost all my teachers at school with none patronising or over-protecting me on one hand or disparaging me on the other. Even the solitary arts and crafts teacher, I mentioned earlier, barring that one utterance always had an attitude towards me that grew gradually over the years from the ambivalent to the border-positive.  I wore thick, heavy steel callipers during my school days, which went all the way up to my thigh. Despite that, when teachers needed assistance with fetching or carrying books and when small and big chores needed to be done, and we students volunteered to help, I was often the one chosen. Even when it meant going up and down several flights of stairs over three storeys. Scholastic excellence and leadership roles at school inevitably led to teachers taking extra note of me. I usually felt loved by them. Memories of conversations with several teachers, including the art, music and sports teachers, on dreams, aspirations and life in general, even today, have a rosy glow around them. Hindsight is a beautiful thing to acquire, especially, later in life. It throws incidents, events and utterances of people in your dim and distant past into sharp relief lending a better understanding of people and human relationships. Today, almost half a century later, I wonder whether my teachers during the primary and secondary school years, through some tacit understanding and inner kindness were encouraging towards me and appreciative of me in order to boost my confidence in my own abilities and to build my self-esteem.

Drawing of two school girls sitting together at a deskI saw the same positive approach towards me in my classmates right from kindergarten and primary school to higher-secondary school. I cannot really claim to know how they perceived my disability while we were growing up but what I do know or would like to believe is that most of my classmates or all of them did like, love or respect me. Not only for my academic or other accomplishments but also for who I was. No one treated me differently or as special. I was just one of them. I do not know whether this was a result of the fact that I was an amiable and sociable person by nature and was entirely independent in carrying out my daily tasks and routine activities. I never sought help nor was offered any. In fact, it was the other way around with many classmates seeking me out for assistance with homework and other school assignments, for drawing in their sketchbooks, and later in biology lab journals and on rare occasions even to settle small disputes among them. I forged close friendships at school which remain strong till today. Thus, I blossomed at school in every way.

I cannot however, speak for other children with disability at school as having had positive experiences as I did. There was a boy named Vicky in my own class who had polio, wore callipers on both legs and had to be physically carried to class daily by his parents. He’ d remain in the classroom during sports class or mass drill. I was quite mobile and would go outdoors and observe everyone. He’d have his lunch alone in the classroom during the lunch break while the rest of us trooped out with our friends. He was always very quiet and withdrawn, had very low self-esteem I think, and would only speak when spoken to. He dropped out of school suddenly in the fifth grade. I understand today that individuals with similar physical impairments are likely to vary in their feelings and attitudes towards their own bodies because of social factors such as education, social support, and real or perceived social attitudes. I often wonder what Vicky’s experiences were of the social world, what attitudes he faced from people around him, where he is and what he is doing in life.

While the school environment was largely responsible for affirmatively validating and even lionising my identity in many ways, I also had to secretly and quietly battle a few internal demons in the same surroundings. The pain points were dance class and the sports class. Up to the fourth grade or so, I’d actively participate in the dance class often enthusiastically performing impromptu some song and dance that I’d have learnt from an older cousin in Odisha or that I had improvised on my own. The dance teacher, Mahipalbhai, would also play alongside on the dholak or the harmonium with loud exclamations of delight. By about fourth grade, I realised that I did not dance gracefully like the other girls in my class. The bulky and cumbersome callipers and the way I perceived my body due to these, I think, had a large role to play in my gradual withdrawal. By seventh grade, I’d sit on the sidelines in the dance class as a bystander ruefully watching the other girls glide around the floor like swans (or it seemed to me). On most of those days, I’d really want to join them on the dance floor. Be one with the rhythm. I was always dancing in my mind during the dance class. Observing the dancers. Immediately noticing when anyone was out of step. One day, Mahipalbhai looked my way and said, ‘you used to love dancing in your younger years. What happened to you?’ I smiled at him and kept quiet. However, I was very careful to always keep a straight face and maintain a casual and cheerful demeanour when watching the others dance. I would have died had anyone known how vulnerable I felt or how fragile my mood was or how close to tears I was at times. I mastered the art of looking stoic at such times. I realise now that I had been easily susceptible to social and cultural stereotypes of the body and personhood, had fully adopted an ableist homosocial world view for myself which included being acutely self-conscious of my body in its interactions with the world around and being anxious about the way I looked. I had learnt early in life that women are primarily defined by physical appearances and I had begun to aspire to live up to those ideals of body type and beauty. This is the time and the arena where I acquired a body image and self-concept that was border-negative. Obviously, it was a gendered concept that was reinforced and legitimized by the socialisation process in general and by the mass media especially advertising and cinema as mentioned earlier. My body was, in this way, the site for both an individual and a cultural inscription. Anyway, when I altogether stopped dancing at school, it meant that I did not participate at all in school annual functions despite my other love, acting. Now, I regret that my inhibitions kept me from volunteering for these since I could have and would have really enjoyed myself.

In the sports period (and we had two in a week), again I’d sit on one side under a tree or on a bench in the school compound watching the rest of my classmates play. They usually played dodge ball or dog-and the-bone. I’d watch them swiftly run around the circle, deftly skirting the other players to avoid being caught or ducking to avoid being hit by the ball and usually I’d enjoy watching the game. As in the dance class, so here I’d usually want to run into the circle and play with them. But never did. It was probably when I was thirteen or fourteen and in the seventh grade when the urge to join them got the better of me one day that I realised that I could remove my callipers and play langdi with them which entails hopping around on one leg and chasing others to catch them. I did so and enjoyed myself since I could run quite fast on my right leg. But, it was too late by then as school closed for the summer and I was scheduled for another major surgery on my left leg. From the eighth grade, the class was to graduate to playing volleyball.

An honest confession I must make is that the callipers were never really in the way during the simple exercises of mass-drill every Saturday morning at school. But, from around age ten, I took the easy way out, mischievously deciding not to sweat it out with the entire school and instead to seat myself on a stone bench watching everyone do the drills imagining their discomfiture in the sun and relishing my pleasant comfort from sitting in the cool shade of trees.  No one asked me, to my great convenience, why I suddenly desisted from doing the drill. The drum would roll and the sports teacher would use his police-type whistle and left right everyone would go. 1-2-3; 1-2; 1-2-3. I’d sometimes hum a film song to myself and enjoy the scene.

I lived a sort of dual life between school and my neighbourhood at home from age five to age fourteen. The moment I reached home, I’d unbuckle and unlace the calliper from the thigh to the boot, remove it in a jiffy (my doctor had said I could remove them once I returned from school), change my clothes, have some refreshments, hurriedly complete my school assignments, and then face the best part of day. Playtime! In my housing colony, there were about 20 of us, boys and girls, who were the same age. We played rough-and-tumble and quite boisterously for about three hours every evening all kinds of outdoor games: hide and seek, blindman’s buff, badminton, hopscotch, fire on the mountain, dog and the bone, and several indigenous outdoor games including kabaddi, kho-kho, langdi, satoliya and eendu. Once the callipers were removed, I could easily play. I lurched somewhat of course but could play quite well pretty much everything except dod pakkad which required a lot of running and then grabbing other players. I had great stamina and was much stronger than other children, boys and girls alike. Perhaps our non-vegetarian diet at home had to do with it. So, I excelled at kabaddi even, on occasion, dragging two-three boys at the same time over the line. We also cycled a lot and over quite long distances, played cricket by the river Sabarmati at Shahibaug in the summer vacations. We lived in that colony for more than a decade and so, the childhood years passed happily at play.

The other activity I loved was acting. From the age of seven till about age twelve, about an hour each evening was spent with a bunch of friends on the terrace of our apartment. We would teach one another dances we had learnt at school, or would energetically and excitedly improvise our own steps. I’d even choreograph songs learnt in the folk music class at school and teach them the steps. We would play-act impromptu on stories we made up, stories we heard and we improvised on scripts. These plays would include song and dance sequences too. I delighted in playing characters with greater scope for dramatic enactment such as the haughty queen, the wicked mother-in-law or stepmother and imaginary villainous characters.

Thus, my life at school and the one I lived at home were vastly different. At school, I was the class topper, (later) head girl and thrived in participating in co-curricular and extra curricular activities. But, I also denied myself (and today it seems inexplicably so) the joy of participating in school annual day functions and playing games in the sports class that I played at home anyway. The callipers were instrumental in this denial as I mentioned earlier. For years, neither my parents nor I knew that the calliper could be bent at the knee when required. All one had to do was adjust a metallic clip near the knee strap. I could have also taken off the callipers, played with my classmates and then put them back on. Sadly enough, it just did not occur to me to do so. And yet, there was a degree of shyness and self-consciousness at school (well camouflaged of course) that was not there with friends in my neighbourhood. However, in the ninth and tenth grade at school I did play volleyball, which did not entail too much running. I had a good and strong service and by now my orthopaedic doctor had asked me to wear only custom made ankle high leather boots without the steel callipers so jumping about was not an issue. To my great surprise, that year, I scored the highest marks in sports class or PT (Physical Training as it was called).

There is another significant experience in my life at that age that must be mentioned here for it has an important bearing on my physical and psychological experiences, feelings and attitudes with respect to how I felt about the appearance and desirability of my body, disability and body image. This pertains to the festival of nine nights or Navaratri in Gujarat sometime in the months of October or November.  It is a time when young and old all do the garba dance in ecstasy in reverence of the Hindu goddess Amba. Garbas are also performed at any event or celebration of joy such as weddings and gatherings as a mark of merriment, celebration and revelry. They require a sense of timing, grace, speed and stamina. In Gujarat, skills in graceful garba dancing are assumed, expected, appreciated and looked at favourably in the young, especially in young women. It is an art and a craft to be perfected over time that gives them a high quotient in terms of their attractiveness and femininity.

Right from the age of four to fourteen, I thoroughly enjoyed myself during Navaratri doing the simple two-taal and three-taal garba steps of the time and the dandiya raas (a dance using small sticks after the garba) with my friends in my colony and neighbourhood. I never felt different or that I danced differently from others despite my lurching gait. But in the summer between the seventh and eighth grade, at age fourteen as mentioned earlier, I underwent a surgery on my leg. My doctor asked me not to dance during Navaratri that year. So, for those nine nights, I sat at the otla (verandah) of a neighbour’s home on the ground floor and watched the festivities. Somehow, after that year, I did not dance the garba again though I did the easier daandiya raas for a couple of years more. I had stopped dancing at school in early childhood and now as a teenager, I stopped dancing even in the only space I had made available to myself, my neighbourhood. In my head, I had started equating looking good in this context with the ability to walk straight and dance gracefully. My identity was by now fully intertwined and associated with my body. In my eyes, my personality, deportment, body language, overall attitude and self-confidence that I derived from academics did not measure up at all. Navaratri, as I experienced it thereafter, highlighted my defeminisation, adversely impacted my self-esteem, got tightly enmeshed in multiple cultural discourses of bodily aesthetics, social imagery and embodiment and constructions of disability. I was constantly comparing myself with the ‘beauty’ and ‘normalcy’ standards of non-disabled women during the Navaratri, and felt that culture had typically denied me some traditional locations. A sense of being disabled became the most pervasive aspect of my identity. For the remaining years of school, I’d shut myself up at home, enjoy watching people dance from the window of my room but also feel very emotionally distressed on the inside. Sometimes, I’d cry myself to sleep.

Lived and gendered narratives of disability are a useful starting point to understand the complexity and politics of the socio-cultural world wherein the oppression of disability emerges and is perpetuated, and through which critical knowledge of bodily impairment, embodiment and disability are obtained. Looking back from the vantage point of today, when the old memories do not dredge up the same emotions in any way, when I can look dispassionately at all those experiences, I realise I have moved ahead in life by resisting stereotypes of disability and taking agency in life but that is another story.

Illustrations by Manali Roy.

Published 20 February 2020

Head shot of Shilpa Das smilingDr. Shilpa Das is Principal Faculty in Interdisciplinary Design Studies teaching social science, critical theory and humanities courses and heads the PhD Programme at the National Institute of Design, Ahmedabad, India. She worked on a communications design campaign on strategic behaviour change with respect to persons with disability for the Government of Gujarat. She is on the Core Advisory Board of the Bill and Melinda Gates Foundation (US) on projects related to global health and women’s sexual and reproductive health (SRH). She has published several articles and research papers on disability and is on the advisory board of various organisations working with disability in India. Her PhD thesis examined gendered disability in Gujarat especially covering aspects of embodiment and social stigma.

Manali Roy holds a Graduate degree in Comparative Literature, and a Masters degree in Museology (Study of Museums), and is presently pursuing a Masters Programme in Graphic Design at National Institute of Design, Ahmedabad. Her other interests include collaging, clay-modelling, travelling, and learning new ways to address her hearing and speech access requirements.