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Disabled But Not ‘Defective’: My Journey As A Polio, Heart Disease And Cancer Fighter

By Anita Ghai:

“How come you had polio? Were you not you vaccinated? Did Why was your mother not more careful?” These are some questions that always haunt me. Of course, there are many others such as “Why me?” that all of us always ask ourselves.

But what can one reply to these questions? In an effort to defend my mother, and indeed myself, I respond by reeling out factual information about the polio vaccine coming to India in 1959, one year after my birth. There was little that both my parents could have done.

However, the fact remains that I am a ‘marked person with polio’. I have no memory of an able body. Hence, the world that I registered, gave me a message that to be disabled is to be defective. It is a place where disability maybe endured but in a conclusive analysis, it is intrinsically disapproved of. Not surprising therefore, it took me a long time to own my polio and disabled body and accept that I was disabled but not ‘defective’.

While I was not left out in the familial interactions, the discourse within the family was of curing the ‘poor girl’ — “Itni soni hai par dekho na kismet ko” (“She is so pretty but look at her luck”) — was what I have grown up hearing.

Disability records the pain and anguish of disabled lives in addition to families and their disabled children both learning to resist the stigma of disability. My family was equally affected by the polio story, and the theme song was ‘quest’ — thus searching for cure of every kind. Across the 58 years of 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 an able-bodied person finally!

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Shared on Facebook by Anita Ghai.

My first recollection is when, as a child, I was buried neck-deep in such ‘curative’ mud at the tender age of eight during a solar eclipse. My trauma remained suppressed for a long time and it was only in later years, through psychoanalysis, that some of the traumatic memories resurfaced. Later my parents took me to the Balaji Temple in Mehndipur, a famous Hindu pilgrimage centre in Rajasthan, India. The belief is that the insane and possessed person is cured by the blessings of Lord Shri Balaji. At this temple, I also saw that some people were shackled in chains, which I later understood to be 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. I was made to bathe there in the hope that the sulphur water would take away my polio and make me whole again. When my father’s brother suggested urine therapy, my parents and I did not entertain the idea as we found it repulsive and disgusting.

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 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 who would tell my body that when it woke up, the polio would be cured. But the following morning, I would, once again, open my eyes to the reality of my life.

Spending a lot of time with my grandmother meant listening to stories. One of the most important stories 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. Thus, I became both a threat and a reminder of imperfection — to myself and to those around me. Not surprisingly, the child in me as a polio survivor had several questions, which my parents had to deal with constantly. My parent’s 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 God’s gift?” I am not quite sure if 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. In my adult life, I tried very hard to put my disability behind me and was not viewed as the ‘other’ by my teachers and colleagues, with whom I worked with, over the years, especially in my college. It helped me understand how illness is given significance and consequently comprehended and experienced through socio-cultural processes.

Nonetheless, access still bothers me. I have countless instances of assurance for a conference or seminar that the place is on the ground floor. “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 wheel chair 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. Uneven ground, passing pedestrians, cars, buses, auto rickshaws, and cycles whizz past inches from me as I try, with rising panic, to desperately work out the kerb cuts. Today, after two decades, my wheelchair has become the source of my liberation.

The notion of beauty and femininity was yet another area that I needed to confront with disability. I am fair — something my north Indian background cherishes and marks as a sign of beauty. But my gait did not conform to feminine ideals of beauty. I still remember that, as a child, when I expressed my desire to wear tights or long pants, this idea was interpreted by others as my need to hide my braces and thus cover my disability. I came to believe that was true too.

In November 1968, I got sick with rheumatic heart disease. Due to our negligence, the mitral valve got damaged, resulting in the first open heart surgery in 1980, for the replacement of the valve. The tissue valve gave way so I underwent an urgent second heart surgery in 1988 to get a mechanical valve. Now I need constant blood thinning. Soon, I realised that very prestigious roles such as being married and motherhood are both difficult aspirations as I coped with illnesses.

Throughout my illness, I mourned but I never lost my sense of humour or my ability to smile. It was interesting that my family, though in despair, found within themselves the capacity for creating a playful approach to my illnesses. Each member had a list of proverbs, jokes and punch lines about realities of life.

However, the transitions were problematic as losses were escalating. A mammogram confirmed a second stage breast cancer. The word ‘trauma’ was really an understatement. It was as if cancer broke my fused thread of temporality — the past had converted into the present and the future lost all of its significance. Disability and cancer changed my relationship 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 that 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 because I had thought of a litany of terms such as ‘cancer, polio and mitral valve fighter’, ‘illness soldier’, ‘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.

What was worse but, in retrospect, the flip side, was that, very often the lumpectomy and loss of hair, tells us something about the way our society responds to femininity.

Even as I was sedated under heavy anaesthetics, and my scarred breast would still be under the knife, I did not muster the courage to say yes to a mastectomy. I opened my eyes in the ICU to a dull, throbbing ache which I tried to ignore. I found myself trying to disguise the physical evidence of my treatment by wearing scarves but not the wigs.

Yet, my disabled self was very intact, though marked by scars in many ways. The tears, indeed, are always cathartic. They liberated and permitted me to transcend the negation of the ones who hated the fact that I was vulnerable and weak.

However, my independence/dependence, in the physical world remains fluid. The reality of my driving, conversely, is contingent on caretakers to assist me in getting my wheel chair out of the car. For a stranger, this transgression is very difficult to understand. One moment you are autonomous, able to deal with life, the next you are at the mercy of the caretaker, enhancing the experience of helplessness.

A colleague asked me whether I believe in miracles. When I responded in the affirmative, she was taken aback and said, “Ask for a miracle to cure yourself from polio.”

Strangely, it 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 would my life have been if I didn’t have polio and the other illnesses. I think it is telling that my first questions were: “Will I be able to drive? Will a man love me and take care of me? What kind of fun and excitement will I experience? Would intimacy be real?” I did not ask such questions because they were not available to me. I’m quite content with my life. If one does not empathise with a disabled subject and my personhood, one will not be in a position to understand the intimate core of my disabled self.

This is an excerpt from Rethinking Disability In India, Routledge India, 2015. 

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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