Abstract:
In the last few decades, writing disability autobiography has emerged as a field of inquiry (especially of women with disability) in the field of humanities. The reason behind writing about personal history of the disabled women is that sexual identity and sexuality of a woman with disability is almost never talked in India. The paper tries to explore the present scenario of disability in India on the basis of life and experiences of two women Shivani Gupta and Malini Chib; and foreground the need to reconceptualise the relation between gender and disability. The paper looks at disability as a social, cultural, and political phenomenon; and the need of the shift from ‘charity’ to ‘rights’. These autobiographies show like never before the insights into identity of a woman living with crippling disability. I have chosen two disability autobiographies as a valuable and liberatory medium to introspect the “self”. These women defy all the odds to emerge victorious inspite of their crippling disability. The story either of Shivani or Malini is not only about the search for independence but also about identity and zeal to live a meaningful life despite their lifelong disability. The paper questions how ableism considers the disabled as ‘incomplete’ or ‘less autonomous’/ dependent; what people meant when they use the word “Disabled" and what (Dis)ability implied because the biased stereotypical prejudices that has kept shaping our lives forever has an important part in deciding our status as an individual. It also tries to interrogate a fresh notion of selfhood, a challenge to normative idea of the ‘body', how disabled person adjust and manage disability based on the lives of these women with disability. The paper also looks at how these authors make a shift from body to rights as the locus of self and individuation.
Keywords: - Accessibility, Acceptance, Inclusion, Education, Normalcy, Charity
The current literary moment in India, is not only particularly amenable to autobiography but also to disability autobiography. It would be correct to say that in the last few decades, autobiographies especially of women with disability have been written, published, reviewed and even adopted into films and celebrated like never before in literature. These autobiographies spawn as an abundant body of representation of the ‘self’ in the form of personal testimony and provide at most personal autonomy. It has also been noted that “Autobiography is a particularly valuable and liberatory medium for the representation of disability because by definition itself, it involves self-representation.Autobiographical narratives increasingly living up to its potential as the most democratic, most inclusive and most accessible of literary genres” (Couser, 292).
The practice of writing disability autobiography in India spans over four decades when the voices of these women began demanding their rights. Most of the people who suffered from any kind of disability was considered as outcaste from the mainstream of the society and were looked down upon. Thus, the trend of writing life-sketch became a cross umbrella term which has emerged as a medium of self-representation questioning the norms that suited them the most. Writing autobiography in India has also emerged from the negative representation of disability in popular culture, media and especially in films that had taken disability as a trope. Autobiography is perhaps uniquely suited for the representation of the ‘self’, and that to validate the experience of people with disability, and it has also the potential to counter the stereotypical (mis)interpretation of disability. “Moreover insofar as autobiography is the literary expression of the self-determined life, the genre that may be said to embody personal autonomy, it seems an ideal medium for contesting the association of disability with dependence and invalidity. Writing autobiography, preferably without assistance, may enable individuals with disabilities to cross back over the border into the mainstream or, better yet, to cross out that border” (Couser, 292). Thus, I have chosen two disability autobiographies as a valuable and liberatory medium of self-representation and to look upon gendered approach to disability, especially in Indian context where disabled woman fits well into the stereotype of passivity and dependency.
It is recently that the gender dimension of disability study has widely received attention and concern as a discourse. D. Das and S.B. Agnihotri, in the paper “Physical Disability: Is There a Gender Dimension?”examine the statistical evidences of the incidence of physical disability in India to prove how and why disabled women are persecuted in a higher degree than the disabled men in India.India is a vast country with a population of more than one billion and nearly 70 million people with disabilities. As Anita Ghai has also pointed out “The preference for a son in the larger Hindu community in India, in keeping with its religious philosophy, has now been coupled with technology that can provide a test to screen and determine the sex of an unborn fetus” (Ghai, 54). Thus, women in India always have low status and one can imagine the reaction to the birth of a disabled girl child. There is a famous Indian locutionfor- “A Woman and that too born with disability(ek to ladki upar se apahij)”.
The present study is an attempt to discuss gendered approach to disability, its conceptual and empirical implications that ‘disability is culturally constructed and socially exacerbated’. The paper discusses disability as a social, cultural, and political phenomenon, the present scenario of disability in India and how far it is different from western concepts of disability. The paper also tries to look at the identity politics and sexuality of a woman i.e. still embedded in the basic struggle for survival and almost never been talked about. One of the renowned scholar Nikita Mehrotra in her paper Negotiating Gender and Disability in Rural Haryana also points out the ‘double marginalised’ condition of Indian women with disability by quotingMaya Thomas and M J Thomas “women with disabilities often face double discrimination due to the prevalence of traditional gender roles and expectations ” (Mehrotra, 407).
The discourse of disability study also has not been left stained by the exploitative gender biases laid down by our society. Disabled women activist also admit that in the country like India women have to suffer because of both - being born in the particular gender and for the fact that they are disabled. Even all the disability movement often overlooks the concerns of disabled women.
“Disabled women activist, of late, have demonstrated that disabled women suffer oppression on account of both their gender and disability. They accuse the disability movement to be dominated by men's concerns, as it largely ignores issues of women’s social and economic discrimination, sexuality, stereotypical images, and oppressive mores relating to child bearing and motherhood. They have also been critical of feminist movement for neglecting their problems by failing to recognise the disability perspective” (Mehrotra, 407).
Thus, women are made to recline amidstthe four walls of houses, having no scope to nurture an identity of their own. Disability is often seen as an end of life. Similar to the literature by the marginal, the narratives of disabled people emerged more like a triumph over tragedy. Disabled people (especially women) have largely been neglected when it comes to education, accessibility, state policy, research and so-calledwomen's movement. This reality is true of women with disability in the cultures where the role of a wife and mother is considered as the primary role for a female. The attitude of people towards disability, and how disabled persons adjust and manage themselves can best be understood by reading the life sketch of women with disability. To gain an insight into the issues to encounter disabled women in India, I will begin by looking at the life-narrative of two women- Shivani Gupta and Malini Chib; their life, experiences, and general disability scene in India and in west. The paper is also an attempt to discuss the prevailing charity model of disability in India, and the need of the shift from charity to rights. These authors make a shift from body to mind as the locus of self and individuation. Furthermore, these autobiographies also showlike never before the insights into identity, and a woman living with crippling disability.
“I changed that day. I changed forever-
I was no longer the carefree person who dreamt of having
her own family.
I didn't know yet who I was now; neither did I know how
I was supposed to go on.
The one thing I knew was that tomorrow wasn't going to
be a better day.
My life from now was about rediscovering myself-
Struggling to let go of all that I had lost;
Learning to appreciate what I had left” (Gupta, 45).
The autobiography of Shivani Gupta No Looking Back: A True Storybegins with such self-conscious and counter-discursive form of life writing. Shivani Gupta is the founder of “AccessAbility”, a non-governmental organisation devoted in the area of disability. She is one of India's best access consultants who became disabled at the age of 22 in a car accident. She ended up in a wheelchair, paralyzed in all her four limbs. Her dreams shattered even before she has begun her life. The autobiography covers her life-span from childhood to adulthood, her journey of all the challenges that she took up. The other life-sketch that I have taken into account is One Little Finger by Malini Chib, a disability right Activist, founder and co-chair person of ADAPT (Able Disabled All People Together). Her contesting life-writing shares her experiences as a disabled in India and in West. She was a fighter in all the sense that she not only makes her own life, manages everything, but an inspiration for all the disabled. The book has much to do in changing the society's outlook towards disability. Malini is suffering from a neurological condition called cerebral palsyoften considered as a disease which makes body movement and speech extremely difficult. However, in Malini's case the bodily impairment doesn't hamper her cognitive functioning.Though, these autobiographies may be looked as an exceptional story that is smudge this binary of ‘disabled’ and ‘non-disabled’; but it has much to do in changing the society’s outlook towards disability. There are several crucial question that these authors seeks to us which are sensitive to the issues like autonomy, personal privacy that everyone desires, accessibility, rights, the question of ‘self’, the role of ‘normative body’ and the relation between gender and disability. Anita Ghai too notes in her paper “Living in the Shadow of My Disability” that the task of locating the “self" and “individuation" under such conditions for them has been a dismaying one. She also gives the combat analysis of the struggle of women with disability. Ghai says:
“It was a painful and disillusioning realization to recognised that disabled women occupy a multifarious and marginalized position in Indian society, based on their disability and also on socio-cultural identities that separate them into categories constructed according to such properties as caste, class, and residential position. Disabled women thus can have plural identity markers that make their daily experience perplexing and difficult.” (Ghai, 2002, 49).
Disability movement in India thus, begins with such segregation having experienced by all disabled in general. Besides, our extensive literature on disability in India has also been failed to comprehend this reality. The autobiographical narrative of disability has been a rare one. The more common script in disability narrative including autobiography is that of triumph over tragedy. In the field of humanities , it was not until the publication of the bookEnforcing Normalcythat for the first time brought a significant change for better understanding of this term “ableism”, “dis/able" and the concept of normal.Lennard J. Davis' Enforcing Normalcy: Disability, Deafness and the Body is a ground breaking text in the field of humanities. Following Davis, as he argues in the book that, to comprehend disability and experiences of disabled, one requires an understanding of the notion of ableism, how this dichotomy has been created and how these people are being perceived. For Davis, the concept of “normal" simply derives from the absence of “illness” or “inability” that these people have. Thus, one is not born disabled but becomes because one is failed to follow commonly accepted and expected set of bodily appearance and behaviour. That is how the idea of ‘normative body’ is constructed.
Thus, these life-writing either of Shivani or Malini can be looked at as a literary voice that seeks to empower the disabled and question our definition of “normal". These works of literature help us to understand the experiences of disabled, as well as understand our own responses to disability i.e. culture specific. Davis in his book, also clearly mentions that Dis/ability is not mere matter of body or bio-medicines (the current ongoing shift) but it is a matter of differentiation that is culture specific and brought under the rhetoric of normalcy. Furthermore, the story either of Shivani or Malini is not only about their relentless search for independence and identity but also of the treatment that their own country has showered upon them.The plight we witness here is astonishing and it necessarily needs to be talked about in order to locate the status of disability and the outlook of society towards them.
Here, emerges the need to transform the age long attitude possessed by the so-called ‘abled’ class towards the disability who consider them merely a subject to charity. The works articulating the voices of the disabled must work towards changing such perceptions: leading them closure to their ‘rights' than ‘charity’.A visit to Haridwar temple with his father was life changing for Shivani. While she was just about to enter the temple at Haridwar, a poor woman in her fifties walked upto her, and handed a 25 paisa coin although she was dressed nicely. Before she could say anything, the woman had left. Shivani Gupta narrates her own experience as follows:
“The woman had thought of me a beggar simply because I was disabled! She had assumed that because I was disabled I was needy. I didn't know how to react- whether to laugh at her nàìveté, or feel sad about what I had been reduced to. With her one charitable act, the woman had managed to make me question my own being” (Gupta, 63).
Thus, the image of disability in India is one associated with charity, pity, and condensed behaviour. The chain of incidents that these women experience showcases that society has pulled them down in all the way.
Furthermore, the indifferent attitude towards disabled worsens the situation. The image of disability is an emphasis on charity. As elaborated by Shivani in autobiography this charity model of disability that becomes an important issue to be discussed here. After her accident, she had to leave her career in hotel industry. She was left alone at home having nothing to do. One day one of her friends came to her place and gifted her painting brush and few shades of water colours. After so many failures in attempt to create something, she finally got success. Although, she had never thought of painting as her profession. As elaborated by her “In spite of all the laurels and recognition I had gained from painting, I knew that it was not I wanted to pursue as a profession. The reason being that it didn't seem like a very stable profession and I could never judge if people purchased my paintings because they really liked them or out of charity towards a disabled artist. Knowing this was crucial for me. All the media stories about my talent from my disability. I didn't want to base my life on charity” (Gupta, 73-74). This stigmatization is resolute from our mindset. No one understands that disability is just one of our many characteristics. Disability never implies a person as useless, hopeless and worthless. Although, this paper in western context would fail to comprehend the reality of Indians where these disabled people are being treated as people having no identity, no future whereas in west there is a different scenario. The only identity marker,in Indian context, that differentiates them from the crowd is their disability. It is always associated with the act of charity, and the general idea of this charity is religious in nature.Giving assistance or providing any kind of help is considered as performing a dharmic (religious) duty towards them.
“I knew for a fact that I wasn't the best painter- so I always had this dilemma. Were people purchasing my stuff because it was good, or merely because I was disabled? I couldn't have lived with answer if it was the latter, so even before I could find out, I decided to try my hand at something else” (Gupta, 73).
However, as Malini says London was a place where she has blossomed and acquired stability with excellent management for the first time since her birth. She even has learnt to read, do well intellectuallyand has begun to walk. People there loved and accepted her for what she was. Moving back to her native place India proved a dark period in her life. She felt left out, isolated, and frustrated not being able to participate and contribute fast, like her peer group. She began to question- “Did I have my own personality? Was I just another disabled girl who needed things done for her? I knew that I was different and trapped in a dysfunctional body, but did others realize I had a spirit and a mind separate from this body?”(Chib, 54).
Thus, the task of re-locating the: from body to soul ‘self’ under such poor conditions for them was a daunting one. They were left out with the assumption that they had no feelings and thus, how could they feel left out? This is true especially of women with disability in India. There is this need to bring a shift from charity to rights. One would be very surprise to know that according to the census report, out of the total population of India, 6% i.e. 70 million of the total population of India are people having different sort of disability. Our policy-makers, other governmental program for people with disabilities revolve around reservations that are much easier than creating an inclusive environment.Consequently,the physical environment is also largely inaccessible and inconvenient. The lack of availability of other assistive technological devices like electric wheelchair at an affordable price, escalators at public places, accessible restrooms add miseries to these people.
Moreover, our studies have found that the present scenario of disability in India, is very much different from that of West. As Malini also discusses:
“the old medical model of disability had changed to a right based approach, which was known as the social model. According to this, if a disabled person could not gain access to offices, restaurants, libraries etc., it was not because she or he could not walk but because of the faulty design of the environment, or the faulty attitude of society. The old belief that a disabled person had to be fixed, fitted and cured had changed to a more special approach. This definition, made a clear distinction between the impairment itself (such as, a medical condition that makes a person unable to walk) and the disabling effects of society in relation to that impairment. In simple terms, it is not the inability to walk that prevents a person from entering a building unaided, but rather the design or location of stairs that are inaccessible to a wheelchair- user. In other words, disability is socially constructed” (Chib, 2015).
Furthermore, “the cultural understanding of the concept 'disability' is central to the determination of the position or status that the disabled individuals are given in a specific society. Cultural understanding is also shaped by the meanings attached to the concepts of human being or personhood, by the social and economic organization of a given society, or by other internal and external cultural dynamics” (Igstad and Whyte, 8). Culture and related practices are foreplayers in deciding the key roles of people/individual who inhibit it.Thus, “Culture has a normative role in a given society. (Goodenough, 1963) Thus, it sets standards and value of a person, their gender role, even the concept of disability is formed by the conception of a person in a society. In India people with disabilities are always be treated as ‘second- class citizen’. The biased stereotypical prejudices that has kept shaping our lives for ever has an important part in deciding our status as an individual. “Society always has this stereotypical concept of disabled people, where they are portrayed as being extremely dependent and helpless” (Chib, 85). In a patriarchal culture like India, these deficits become more tragic where the role of a female is limited to motherhood and all they need is physical beauty. Ghai discusses quoting Michele Fine and Adrienne Asch, “The denial of women's ‘traditional roles’ to disabled women creates what term “rolelessness,” a social invisibility and cancellation of femininity that can impel disabled women to pursue, however hopelessly, the female identity valorized by their given culture but denied to them because of their disability” (Ghai 2002, 55). This stigmatization is very much visible in India. Ghai in her essay “Disabled Women: An Excluded Agenda of Indian Feminism" quotes one of the renowned scholar Rachna Johri that “In a culture where being a daughter is considered a curse, being a disabled daughter is a fate worse than death. She has to contend with both her role as a daughter, when what was desired was a son, and with herdisability. The desire for sons has to be understood in the context of the ritual value of sons as well and economic burden on bringing up daughters” (Ghai, 53). Moreover, Disabled women are never been allowed to indulge in love making, have children or so called marriage. Marriage for them ‘is impossible and that can never be part of their life.’ As stated by Malini in her autobiography, “I wondered if there would ever be a man in my life. Would a man see beyond my body? Would anyone put their arms around me and dance with me? Would anyone kiss me passionately? Would I ever be needed by a man emotionally or would I always be regarded as a burden for someone to take care of?” (Chib, 65). These are certain questions which have never been answered with one exception i.e. the life of Shivani who was blessed to experience the feeling of to be loved by her one and only Vikas. One hardly find in India, a disabled person getting acceptance to fit into the so-called heterogeneous society. Shivani not only lived her life but celebrated it getting married to Vikas. Her marriage can be viewed in terms of an eye opener for society who perceive disability as stigma and also for the fact that Vikas was not disabled, marrying a disabled not for the sake of charity but because he really loved not her body but her soul. Reading the life of Shivani, one can realise the ongoing shift of not only the self-acceptance but of the society's attitude towards disability. Her marriage defied all those socio-cultural norm that it had created for disabled women. Davis problematizing the prejudiced attitude of society writes: “Because [T]he problem is not the person with disabilities; the problem is the way that normalcy is constructed to create the ‘problem’ of a disabled person” (Davis,24). In my understanding too, this concept is culture specific and brought under the rhetoric of normal and this notion is also of deep introspection. “What is normal? Who is normal? Why am I abnormal? Who decides? I cannot speak, I cannot walk; does that make me abnormal? It seemed obvious that I was different. I began to be painfully aware that I was never going to be accepted by the so-called normal society” (Chib, 56). That disability is a category of vulnerability and precarity is no longer in doubt, however, questions related to the conceptual constitution of this category remain under-researched and these are certain questions that are unanswered even by those who have gone through it. The common argument that all disabled make is that everyone in this world is not fully independent rather we are interdependent and everyone in his or her life undergoes once a feeling a disability.
“Nobody is completely independent. For instance, a normal person needs a carpenter, a plumber or an electrician, perhaps. The disabled too, are dependent on getting help to enable independent living, so that they can function more efficiently. The idea behind this is that we are all in someway or another interdependent or co-dependent – socially, emotionally, physically and intellectually” (Chib, 149).
The issue of autonomy is also much more complex in respect to disability. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect individual’s life. On one place Malini also shares this universal experience- “I felt there was a need for disabled people to socially interact with the so called normal people. I believe that though we all have our own problems, we must make an effort to succeed with our fellow human beings. Perhaps, disabled people have to make more of an effort, who knows? I believe that nobody is perfect; we are all in some way or another disabled. Our disability is more visible, other have what I like to call, an invisible disability” (Chib,103). She has experienced all kinds of barriers curtailing her independence. It was not her inability that restricts her but the absurd architecture. Malini questions: “Why do normal people think that everyone in the world must keep the norm of walking pattern, and if one does not keep to the norm of walking pattern, and if one does nor walk like everyone else, one will be left out of life?” (Chib, 53). She faces huge obstacle as far as accessibility was concerned.The basic problem in India even today is the lack of accessibility. Thus, instead of focusing on how society views disability, one needs to look upon how the social structures are responsible to make the condition worse. Besides, Shivani tells about the horrible experience of visiting the Kanyakumari temple:
“A couple of years ago I had visited the temple with colleagues from the centre. I wasn’t allowed to enter the temple in my wheelchair as it was considered impure. After a great deal of hesitation, I allowed one of my colleagues to carry me in his arms to get a darshan. I didn't know better, so I agreed to be carried, but it was one of the most humiliating and embarrassing experiences of my life” (Gupta 119-120).
But later on in her life, after the training in the field of how to make the environment accessible, she justifies her anger at the humiliation that she has been made to face. All that happened to her, was simply because of inaccessibility. It was only after this realization, she decided to take training from UK along with her husband Vikas on how to build a non-handicapping environment and to what extent this accessible environment can benefit people. During her training, she learnt- that the elements like a ramp, an elevator and large restrooms were important for a person using wheelchair. It was only after her training that she could visualize a complete picture, wherein a non-handicapping environment needs of all kinds of disability and the importance of accessibility for inclusion of a disabled person in society. She realized how India needed to work towards creating accessible environments across the country and thereafter she came to be known as India’s best access consultants.
The other perspective as far as autonomy is concerned is about getting a chance to prove the self-worth and personal privacy that every human being desires on their own to develop and think, just like one need food or water. It is because of inaccessibility that all disabled people in India have to face the lack of autonomy and personal privacy. Malini, it was only without her personal attendant that she began to take on more of the outside work. She felt free instead of being constantly forced to be with someone and having to tell someone what to do. She began doing things on her own. But this happened to her when she was in London. She herself says- “I was free! Free to go anywhere I wanted. This was very different from the situation in India. It made me forget that I couldn’t walk” (Chib, 117). She roamed on the streets of London, shopping groceries, hitting to the clubs etc. “For the first time, as a woman, I had choice of choosing my own things and choosing what I wanted to do, where I wanted to go” (Chib, 2015, 120). It was only possible because the structure there was truly accessible. It was so different in India where she was asked several questions, apart from staring to her. But on the other occasion, she addresses that there is no equal opportunity policy pertaining to disability. She had to face a lot of problem getting an accommodation inside her institute during her master's program in London. She was asked several times there about her personal attendant or who is going to accompany her. It is believed that a disabled person should always carry a helper. On another occasion, when she decided to go to the University canteen for lunch, the incident that happened to her was humiliating. While she was waiting in the queue for food, she was offered help of a young gentleman whose companion in turn ridiculed her:
“When I believed all was well, his companion arrived, she was awful; she was very rude. She came up to the table and ignoring me said, ‘How is she alone? She can’t be alone as she doesn’t know her mind. I have worked with these types of people before. These people doesn’t know their mind, they are mental.’ ‘Who are you with?’........” (Chib,141).
So, one of the defining issues that these writers paint in their life-writing is the insensitivity and outright hostility of society towards disabled. There are always loopholes present inside the entire system that is reflected on the entire discourse on disability.
Furthermore, the other perspective of looking at disability in respect to woman is their sexuality. They are considered as asexual or oversexed. Political and cultural forces always keepthe disabled women in a position of subjugation. As Ghai also notes:
“A great deal of thoughtful work by Indian feminists analyzes the impact of the evaluative male gaze. However, the essential difference between being the sexual objects and objects of the ‘stare' has not been understood. If the male gaze makes normal women feel like passive objects, the stare turns the disabled object into a grotesque sight” (Ghai, 55).
It is ironic that all the feminist movement in India engaged with issue of difference and suppression of women; while they fail to recognise the concerns of disabled women that applies equally to such women too. They are ‘doubly suppressed’under the various labels of gender and disability. Cultural significations also symbolise a disabled person as one needed to be taken care of. As Malini narrates these lived-realities:
“There is cultural association to disability with dependency, childlikeness, and helplessness. A disabled man is on the other hand is viewed as a wounded ‘male’ while a disabled woman is not able to fulfil the cultural expectations” (Chib, 145).
Our media also plays an important role in portraying the image of woman associated with caregivers, child-bearing and so on. The image of woman is one associated with beauty. Susan Wendall, one of the most widely quoted feminist writer and researcher, says in her book The Rejected body that disabled women always gain no attention and is rejected just because her body is different. She has called the disabled self as “rejected body”. In general, all the media and literature portray that disabled women have no gender in common. It is easy to provide them access but fail to recognise the emotional and physical needs of a woman. Thus, sexual identity and sexuality of a woman is almost never been talked about. In her article “No Sex Please, You're Disabled”Malini addresses the issues of women with disability. She writes about feelings, passions and expectations of disabled women like any other non-disabled women. All the feminist texts need to go beyond this binary. Malini is actively participating in this field not just to empower the women but with an objective of ADAPT(Able Disabled All People Together) to initiate a change in access, attitude and policy.
Both the writings, either of Shivani or Malini are not merely a reality and voice of a disabled woman but function as a tool that serve towards developing an understanding of the lived realities of women with disability, a cross cultural perspective and a journey from charity to rights. We are different from each other in one way or another which should be accepted and welcomed like one of the many aspects of humanity.
Work Cited