On the occasion of the International Day for Persons with Disabilities, leading disability rights activist and academic Dr. Anita Ghai reflects on her own life and through it, some of the most significant issues that lie at the intersection of disability and gender in India.
‘How come you had polio? Were you not vaccinated? Why was your mother not more careful?’ These are some questions that always annoy me. Of course, there are many others, such as ‘why me?’ that all of us always ask ourselves.
How can one reply to these questions? In an effort to defend my mother, and indeed myself, I tell people the facts — the polio vaccine came to India in 1959, one year after I was born. There was little that both my parents could have done about it.
But the fact remains I am a ‘person marked with polio’. I have no memory of an ‘able body.’ The world that I grew up in gave me the message that to be disabled is to be defective. It is not surprising that it took me a long time to accept otherwise.
While I was not left out of familial interactions, the discourse that I grew up hearing was around curing the ‘poor girl’ — ‘itni soni hai par dekho na kismet ko’ (‘she is so pretty but look at her luck’). The notion of beauty as linked to femininity was something else that I needed to confront while coming to terms with my disability. I still remember that as a child, I would wear tights or long pants, just so I could hide the leg braces. I realised soon that these changes would not transform my gait.
While the disability experience records the pain and anguish of disabled lives, families and their disabled children both learn to resist the stigma of disability. My family was affected by the polio story, and the theme song was a ‘quest’ for a ‘cure.’ All through my life, I have negotiated with shamans, gurus, ojhas, tantric priests, and faith healers, as well as miracle cures — all to ensure that I could become a part of ‘normative’ hegemony.
Both my conscious and unconscious leanings have given me courage to engage with the theoretical formulations about the subjectivity of the disabled people as well as the societal context in which disability is embedded. I must submit that owning disability took almost three decades.
As a young adult, my yearning was to ‘pass’ as a ‘normal’ person. For many years though clearly disabled, I chose to walk and not take crutches or the wheelchair with the hope that while sitting or moving out discreetly, I would be able to pass as a ‘normal’ person. I went through torture in long flights, as I had to wear callipers. It was only later that I took a conscious decision to make my callipers public.
Passing is a conscious desire to act as if one is something that one is not. Too many people with disabilities have, for too long, tried to pass. It may appear that passing as able-bodied is easy for the person who appears disabled, but the reality is that it is not. Passing is not about interacting in the world, being involved with able-bodied people, having a career that has nothing to do with disability, or going to a friend’s second-floor home. Rather, it is a way to adapt to a task, and you have some real expertise to offer.
However, passing is crossing some line where acting as if you are not disabled causes a problem. There is a limit between taxing yourself within reasonable boundaries and acting against your self-interest because you don’t want to define yourself as a disabled person.
My first recollection was when I was buried neck-deep in ‘curative’ mud at the tender age of eight during a solar eclipse. My trauma embedded in my unconscious re-emerged through the free associative recall of psychoanalysis some years later. My parents once took me to the Balaji Temple in Mehndipur, a famous Hindu pilgrimage centre in Rajasthan, India.
At this temple, I also saw that some people were shackled in chains, a form of treatment for serious possession by a spirit that makes the ‘victims’ violent. As a child I remember being traumatised by this sight and at the thought that the temple authorities might chain me too.
In yet another instance, I recall going to Sohna, a small village near Delhi, that is famous for its sulphur springs, which are believed to have curative qualities for various stress-related ailments. Here, I was made to bathe in the hope that the sulphur water would take away my polio and make me ‘whole’ again.
Both spoilt and coddled, I looked upon polio as my cross to bear and as a gift. However, the challenges that my physical condition presented continued and had to be coped with. As a young girl I remember falling down on innumerable occasions. The physical hurt, though tough at times, was always less painful than the look of fear on the faces of those around me.
In an effort to understand my pain and to be rid of it, I would often conjure up different stories. My fantasy was that my condition could disappear in a variety of ways — by praying hard, a chance earthquake in which I would fall and get up as a non-disabled person. Every night (before bedtime) I would think of a fairy that would tell my body that when it woke up, the polio would be cured.
But there were hopeful moments too. I spent a lot of my childhood with my grandmother. One of the most important stories she told me was of the Buddha, which (for me) became symbolic of the experience of suffering and its containment. In my formative years, this helped me believe that suffering was normal and disability was a ‘form’ of suffering, inherent in every human being.
Not surprisingly, the child in me had several questions, which my parents had to deal with constantly. My parents’ way of resolving my questions was with counter questions. I often asked my father, ‘Why me?’ His reply usually would be, ‘Why not you? Are you not God’s gift?’
I am not quite sure I understood the question or the answer but it definitely raised more questions and awareness. I truly believe that my parents helped me learn some very powerful values at a very young age — the determination to strive and to thrive.
Yet the issue of access to places and spaces continues to bother me. I have lived through countless assurances that a conference or seminar I would be attending is on the ground floor of a building. ‘It has just three steps’, I am told. Three damned obstinate steps and a metal barrier dividing the doorway, making it far too small for the wheelchair to fit through!
Small needs, such as going to a local shop, can be difficult as most places are not wheelchair accessible. Even with a motorised wheel chair, navigating the kerbs is not always easy. Notwithstanding the autonomy, which my wheelchair gives, the structural amnesia of the state and society with regard to built environment still impairs the determination of disabled people to be independent.
In my adult life I came to understand how illness is given significance and consequently comprehended and experienced through socio-cultural processes.
‘An illness soldier’
In November of 1968, I got sick with rheumatic heart disease. My mitral valve got damaged, resulting in an open-heart surgery in 1980. What is significant is that the surgeon asked for a tissue valve. I should qualify that this tissue valve replacement meant that I did not have to take blood thinners. Long-term use of blood thinner medicine carries a risk of serious bleeding complications.
However, the doctor did not bother to inform my father that such tissue valves require another valve surgery. Consequently, the valve gave way and in 1988, I underwent an urgent second heart surgery to get a mechanical valve. Now I need constant blood thinning. I was saved but the whole experience left me with questions about the power and status of the medical profession and also about the social and political basis of any illness. Surgeries also took away ‘natural’ and ‘prestigious’ roles such as marriage and motherhood.
I had difficulty coming to terms with my illnesses but I never lost my sense of humour or the ability to smile. In 2005, a mammogram confirmed second stage breast cancer. Trauma was really an understatement. It was as if cancer broke up my fused thread of temporality — past converted into present, and future lost all its significance.
Disability and cancer changed the relationship I had with my body. My intermittent fight with polio was not as terrifying, daunting and inexplicable as cancer. Cancer created questions; some of the hidden realities of my body were to become even more transparent than polio could ever make them. I had to acknowledge that this time my enmity was with a formidable foe.
There have been times when I took exception to the word,survivor. It was funny as I had thought of a litany of terms such as cancer, polio and mitral valve fighter, an illness soldier, a winner of suffering, among others. However, my internalisations would not allow me to play the victim. I stood up for myself and explained that being disabled with multiple issues is a part of who I am. But, of course, it was not easy.
The personal is political
Yet, my disabled self was very much intact, though marked by scars in many ways. While tears are always cathartic, resisting oppression is my theme song. That the personal is political became the slogan of my active struggles against the subjugations that I had to confront because of undesirable societal attitudes towards disability.
A colleague once asked me whether I believe in miracles. When I responded in the affirmative, she was taken aback and said, ‘…ask for a miracle to be cured of polio, then’. Strangely, this never really occurred to me. I had no memory of an able-bodied self. I also treasure the valuable experience that I can carry through life. I can’t imagine what my life would have been like if I didn‘t have polio and the other illnesses.
I think it is telling that finding a cure was not my real fantasy. Being independent was critical. Once I obtained a permanent job, there were new questions that confronted me: Will I be able to drive? Will there be a man to love me and take care of me? What kind of fun and excitement will I experience? Would intimacy be real? Would I be a mother?
As a young woman, I did not verbalise these questions as I knew that such roles will not be available to me. However, I reframed my questions through the lens of the fact that disability is not a curse. I realised that no one can fulfil all their desires. If someone does not empathise with a disabled subject and personhood, they will not be in a position to understand the intimate core of my disabled self.
Anita Ghai is professor in School of Human Studies in Ambedkar University, Delhi. Some parts of this essay are from her book Rethinking Disability in India.