Women with Disability and Reproductive Rights: Deconstructing Discourses

Introduction

In recent years, debates around gender and sexuality in contemporary India have gained salience and visibility. The activism around the contentious Article 377 of the Indian Penal Code, the mobilisation of sexual minorities, the sexualisation of the body facilitated by the spread of globalisation and mass media and the bold and unconventional depiction of sexuality in some recent mainstream films exemplify this trend. At the same time, sexual violence against women, the most notorious example of which was the December 2012 Delhi gang rape followed by days of angry street protests, has assumed increasingly brutal and blatant forms. The watchdog role of the 24 × 7 electronic media has resulted in sexist statements by politicians and other public figures to become the headlines of the day. The opening up of this discourse is also accompanied by attempts to regulate and police female sexuality, as can be seen in the so-called ‘honour killings’, acid attacks and other forms of structural violence perpetrated upon women who challenge patriarchal norms and exercise choice and agency.

In this paradoxical scenario, the situation of women with disabilities raises several critical and delicate issues. Women with disabilities are a particularly vulnerable section of society, devalued and discriminated against both on account of their gender and their physical or intellectual impairments. Addlakha (2008a) writes that the multiple barriers (physical, social, attitudinal, economic, legal and so on) experienced by persons with disabilities magnify manifold in the case of women with disabilities, rendering them a stigmatised and neglected category. According to the 2011 Census, there are 26.8 million persons with disabilities in India, of which 11.8 million, that is, 44 per cent, are women with 8.2 million living in rural areas and 3.6 in urban ones. This is believed to be a highly conservative estimate by scholars and activists and does not capture the ground reality.

The disability rights movement worldwide has campaigned on the rights of persons with disability for full inclusion and participation in all aspects of social life. The major thrust has been on removing physical and architectural barriers, provision of services, education and employment. However, when it comes to the specific issues of women with disabilities, particularly their experiences of sexuality, conjugality and parenthood, both the disability rights movement and the women’s rights movement seem to talk past each other. While the disability movement in India is largely male dominated, the women’s movement has not paid adequate heed to disability as an axis of discrimination and marginalisation. Contemporary feminist scholarship has sought to address this issue and bring to light the lived experiences of women with disability facing both patriarchy and ‘ableism’. ² The work of feminist scholars such as Addlakha (2008a, 2008b, 2013), Davar (1999, 2001), Dhanda (2000, 2008), Ghai (2002, 2003), Hans and Patri (2003), Hans (2015), Limaye (2008, 2015), Ghosh (2013), Mehrotra (2004, 2006, 2013), Mehrotra and Nayar (2013, 2015), to name a few, can be cited in this context. The recent edited volume by Hans (2015) situates itself against the backdrop of changing gender relationships, emerging ‘trajectories of power’ and a global human rights regime exemplified by treaties such as the United Nations Convention on the Rights of Persons with Disabilities (2006) and the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW). While mainstream social science in India is yet to engage with disability with the same urgency as other categories of oppression such as caste, gender and class, there is no denying that disability is no longer a soft issue to be wrapped in the tissue of charity but rather a political category that speaks the language of rights.

Despite the social and cultural aversion towards disability, the fact is that it is a great leveller that can strike anyone, anytime. The link between poverty and disability is well established and it is estimated that 80 per cent of the world’s disabled population lives in the poorest countries. ³ However, populations in affluent societies, too, face age-related disabling conditions of body and mind; disability scholars remind us that with the increase in life expectancy and medical technologies, most of us are bound to face disabling conditions during our life course.

This article attempts to open up the category of disability from a gendered lens with a specific focus on reproductive rights. Motherhood is a social role with tremendous cultural and ideological heft; the bringing forth of new life from one’s body through the processes of conception, gestation and birthing, sustenance through lactation, nurturing and the practices of care are surrounded by webs of meaning that shape and transform the embodied experience of mothering. When the mother in question is a disabled woman, the discourse of motherhood gets complicated. Sexuality, conjugality and motherhood are associated with normative, desirable, fertile bodies, whereas the disabled body is regarded as defective, undesirable and, thus, devalued. The very juxtaposition of ‘motherhood’ and ‘disability’ is viewed as a contradiction in terms—an ‘oxymoron reality’ in the words of Haldar (2015). Motherhood denotes caregiving while disability suggests a woman in need of care herself, and thus unfit to assume the caring role for another.

The multiple discrimination faced by women with disabilities and their erasure from discourses around sexuality and reproduction will be explored with the help of empirical studies from different parts of the world. The implications of the experiences of motherhood for the gender identity of disabled women, which pose a challenge to feminist understandings of reproductive and caring roles as oppressive and disempowering, will be discussed. Two well-known cases in India, frequently cited in the context of debates on sexual and reproductive rights of institutionalised women with mental disabilities, will also be highlighted. In the ‘Pune hysterectomies case’ of 1994, mentally disabled women, in a state-run institution near Pune, underwent the surgical removal of their wombs, supposedly as a social service to prevent unwanted pregnancies and the discomfort of monthly periods. The second case took place in 2009. It relates to the pregnancy after the custodial rape of a young, intellectually disabled, destitute woman in a Nari Niketan, a women’s shelter, in Chandigarh and the ensuing debates on her right to give birth to the baby in light of her marginal and precarious status. The article highlights some of the major themes surrounding the categories of disability and motherhood, examining cultural notions of what constitutes ‘good’ and ‘bad’ mothering and how disabled mothers negotiate this discourse.

Disability and Reproductive Rights

The experience of disability across cultures and through history has by and large been viewed in negative terms; persons with disability have been viewed as accursed beings or victims of fate, a burden to be stoically borne by the affected individual and the family. Negative social attitudes are internalised by disabled persons themselves; their own self-worth suffers and they come to view themselves as inferior and inadequate. Disability is frequently deployed in cultural representations as a metaphor to connote moral flaws or weaknesses; everyday language is replete with disability metaphors. For instance, Mehrotra (2013) illustrates the local proverbs and folk tales used in Haryana that depict persons with disabilities as being hot-tempered, erratic, cunning and sexually incompetent.

The disability rights movement and the inter-disciplinary area of disability studies, which emerged in the United Kingdom and United States in the 1970s and 1980s, overturned the conventional understanding of the category of disability from an individual affliction or deficit to a social product, the consequence of disabling environments, and social and attitudinal barriers that constrain and exclude persons with impairments from participating in the life of society and, thus, marginalise them. The ‘social model’ of disability, which is the theoretical and ideological fulcrum of the disability rights movement and the discipline of disability studies, thus, focuses on identifying and transforming ‘disabling’ practices and policies so that people with impairments enjoy full human rights and are not discriminated against on the basis of biological or physiological differences.

The similarities with the core ideas of the women’s movement are too obvious to be missed, as both challenge biological determinism and the social differentiation of persons based upon their sexual identity or their ability/disability. Kallianes and Rubenfeld (1997) point out that the women’s movement has a long history of fighting for women’s rights to self-determination and bodily integrity and supports their right to make decisions about their bodies, sexuality and childbearing. Yet, according to disabled feminists, neither the women’s movement nor the disability rights movement has adequately addressed reproductive freedom for disabled women.

The term reproductive rights broadly refers to the rights of women and men to be informed and have access to contraception, rights of women to have a safe and legal abortion, to control her fertility and not to be forced to undergo an unwanted pregnancy (TARSHI, 2010). However, in speaking of disabled women, reproductive rights have a broader connotation. Morris (1995) writes that having sexual relationships (homosexual or heterosexual), family relationships, bearing and rearing children and making a home are all considered important human and civil rights that, if denied to non-disabled women, would cause an outcry. However, since women with disabilities have traditionally been seen as undesirable sexual partners and incapable mothers, for them, reproductive rights also include the right to engage in consensual sexual relationships and bear and rear children. While the women’s movement focuses on societal expectations and pressures on non-disabled women to marry and become mothers within patriarchal structures and, in a sense, aims to liberate women from these expectations, ironically, women with disabilities are routinely denied their ‘right’ to become mothers, if they so desire, by the negative attitudes and values of mainstream culture and society and even by the legal system in some cases. Women with disabilities, thus, view their reproductive rights as more than just the right to choose not to bear a child; they include the right to be recognised as sexual beings, to bear children even if the children are also disabled, to be seen as fit to mother and to refuse the use of genetic technologies (see Kallianes & Rubenfeld, 1997 for references to feminist perspectives). In the Indian context, Addlakha (2007) observes that the focus of disability policy is confined to medical rehabilitation, provision of education and employment. The rights of persons with disabilities to sexuality, conjugality, family life and parenthood remain unacknowledged and unaddressed. The Working Paper by TARSHI (2010) underscores the bleak situation of people with disability in India with regard to sexuality and reproductive rights.

Disability, Sexuality and Women’s Bodies

Women with disabilities are regarded either as asexual beings incapable of becoming sexual companions or as hyper-sexual and unregulated ones who must, therefore, be put out of sight so that their sexuality can be controlled and contained. Writing about her experience of growing up as a disabled girl in a Punjabi family, Ghai (2002) narrates that the restriction imposed on male and female cousins sleeping in the same room was not observed in the case of disabled girls, sending the clear message that they were not sexual beings in the same way as non-disabled girls of their age. Disabled activist Chib (2015) observes that the personal and sexual needs of disabled women are constantly hidden and ignored because they fail to live up to the notion of the feminine body, being the embodiment of sexuality. They are socialised into feeling ashamed about their bodies, and thus deny their sexual feelings and needs.

In her recent autobiographical narrative, Gupta (2014), paralysed after a road accident as a young woman in her early twenties, writes of her experiences of romantic love, marriage and intimacy. Her narrative captures the ambivalent feelings and insecurities about her changed body, its needs and limitations and the ongoing struggles with a world that regards disabled bodies as defective and worthless.

Stereotypes in popular culture also reinforce the idea of the pitiable and tragic disabled woman, as captured in Bhambani’s (2009) description of the disabled ‘heroines’ in mainstream Hindi cinema. Challenging this dominant narrative, a recent film by Shonali Bose, Margarita with a Straw (2015), depicts the story of Laila, a young woman with cerebral palsy and her search for love, sex and romance. Her experiments with sexuality, masturbation, pornography, a lesbian love affair with another disabled woman and casual sex with a male friend turn on the head received notions of the asexual and repressed disabled woman. The film received praise from some quarters for challenging traditional notions of sexuality and disability, and simultaneously criticism for ‘over-sexualising’ the disabled subject. An ‘open letter’ to the director of the film by a television actress Sonal Vengurlekar (Gera, 2015), widely publicised on social media, expressed the view that opined sex was the last thing on the minds of disabled women in India, as they faced so many other barriers and obstacles in their lives. She pointedly asks whether the film-maker would take the responsibility if ‘sick’ men were to molest and take advantage of disabled women after seeing the film. Here again, we note the two extremes of asexuality and hyper-sexuality between which the construction of disabled sexualities fluctuate.

Empirical research by Addlakha (2007) provides insights into the sexual needs, dreams and aspirations of young people in urban India with disabilities, capturing their ambiguous feelings about their bodies and sexualities. Their poor body image emerges due to the lack of ‘fit’ with culturally idealised images of healthy, strong independent and beautiful bodies, resulting in low sexual self-esteem. Since they have been taught to think of themselves as unattractive and undesirable, they may not take the risk of initiating and communicating sexual interest, fearing ridicule and rejection. Living in institutions for disabled persons or living restricted lives within the four walls of their homes reduces their opportunities for social interaction and developing relationship skills. Limaye’s (2008) case studies of two young, hearing impaired adolescent girls highlight how the ‘communication bottlenecks’ they face in a world which privileges the hearing affects their self-worth and the pressures to ‘fit in’. Radha and Hasina resent the restrictions and limitations imposed on them by their families owing to their gender and disability, and actively strive to forge friendships and romantic relationships with other hearing impaired people, revealing their need to engage with the world in the same way as their non-disabled peers.

Sexual Violence

Domestic and sexual violence is a harsh reality in the lives of women with disability, especially because it is believed that they cannot resist their tormentors nor communicate what has happened to them because of their disabilities. Women with mental or cognitive disabilities are at special risk. The report on Violence against Women with Disabilities in India submitted to the UN Special Rapporteur by the Women with Disabilities India Network in April 2013 highlights their plight. ⁴ The horrific gang rape and murder of an intellectually disabled woman near Rohtak, Haryana, in February 2015, where unspeakable torture meted out to the victim was widely reported in the media but failed to generate the kind of public outrage and anger witnessed after the Delhi gang rape of 2012. The protests that took place were largely by the community to which the woman belonged. With regard to sexual violence, the lot of disabled women like their non-disabled sisters in India is bleak indeed; their disability marks them out as the ‘other’, subjecting them to further humiliation and inhuman treatment.

Marriage and Domestic Life

As regards to marriage and domestic life, we find that women with disabilities are frequently given away in marriage to men who are much older, widowers and are unable to secure non-disabled wives due to economic or social reasons. Mehrotra’s (2004, 2006) ethnographic work in rural Haryana reveals that women with mild-to-moderate disabilities that do not interfere much with their ability to perform reproductive and domestic tasks have to work as hard as other women—fetching water from the well, cutting fodder, cooking and cleaning. Few concessions are made for their impairment and if they receive any help or support, it is from their natal kin. Domestic violence and wife beating are common. Disabled men, on the contrary, find it easier to get wives due their structural superiority in the gender hierarchy. Mehrotra (2013) also brings out the role of ‘sorority’ or sisterhood as it operates through highly feminised domestic spaces, allowing women to manipulate kin ties and draw upon physical and emotional support from sisters, sisters-in-law, daughters and daughters-in-law to manage issues that arise from their disabilities. She cites cases where disabled women are married off into the same family as their female kin and can, thus, rely on them for support. Elderly women with age-related disabilities similarly expect care from daughters-in-law and grandchildren.

A study by Khanal (2013), detailing the reproductive health experiences of disabled women in Nepal, reports that disabled women are more likely to get married to disabled men due to the perception that their common experience of disability enables them to understand each other. However, a few disabled women also got married to non-disabled men because they were supportive, helpful and understanding of their disability. In some cases, disabled mothers were abandoned by disabled husbands, who later have got married to able-bodied women at the behest of the man’s family. The study revealed that disabled mothers experience violence within the family, both emotional as well as severe physical violence in some cases. Haldar’s (2015) essay on married women with disabilities in West Bengal also highlights the violence and exploitation that these women face. One of Haldar’s sources, with a disabling accident, was told by her husband, as she lay on the hospital bed, that he wanted a divorce as she would no longer be able to tend to his needs or give him sexual satisfaction. In another case, a non-disabled man who married a disabled woman made it clear that his reasons were strictly practical: unemployed, he expected his wife to avail of the reservation in jobs granted to persons with disability and take care of him! (ibid.).

Disability management within the structures of South Asian kinship, thus, is of a qualitatively different order from the framework of medicalisation and segregation that has emerged in the West. At the same time, with the growth of urbanisation, migration and the shrinking of extended family support and entrenchment of a neoliberal capitalist order, traditional structures of support for the elderly, infirm and disabled are disintegrating (Mehrotra & Vaidya, 2008). The role of the state as the guardian of these marginalised and vulnerable categories, thus, assumes significance, as we shall see later in the article.

Disabled Mothers and ‘Ideal Mothering’

We now shift the lens to the complex discourse of motherhood and how the embodied experience of disability enables us to consider it in new ways. It is in these discourses that societal and cultural attitudes towards disability and the ‘othering’ of women with disability resonate with great force. At the same time, through the lens of disability, we can reconceptualise mothering as an experience that confers agency on a person who is otherwise viewed only as a dependent. As givers of care rather than mere recipients, disabled women attempt to assert or reclaim their identities as ‘competent’ women. This certainly complicates feminist critiques of the female body as a vessel or the receptacle controlled by men through which patriarchal structures reproduce themselves.

The importance given to motherhood in India can best be summarised in the following quote from Sudhir Kakar:

Whether her family is poor or wealthy, whatever her caste, class or region, whether she is a fresh young bride or exhausted by many pregnancies and infancies already, an Indian woman knows that motherhood confers upon her a purpose and identity that nothing else in her culture can. Each child born and nurtured by her safely into childhood, especially if the child is a son, is both a certification and redemption. (Kakar, 2008, p. 56)

Becoming a mother is supposed to make a woman complete and fulfilled; a childless woman is referred to as a barren field (baanjh in Hindi). Her moral power in nurturing and training her children is acknowledged and celebrated. Thus, it is not merely the biological act of giving birth but the process of nurturing that constitutes the experience of motherhood. The mother as the source of selfless love and sacrifice is celebrated in myth and folklore; under conditions of globalisation, the ‘super mom’ who combines career and care seamlessly is the stuff of consumerist fantasy and the backbone of the advertising industry. Disabled women do not fit into these stereotypes. Moreover, the fear that a disabled woman can transmit her ‘defects’ to her child can adversely affect her own marriage chances and those of her relatives.

The valourised mothering role across cultures leads to judgemental attitudes and suspicion towards women with disabilities who aspire to become mothers. Thomas’ (1997/2009) sociological study of women with a variety of disabilities and chronic medical conditions in the United Kingdom reveals how these women are incorporated into the medical and social discourse around reproductive risks to their own health and well-being and, more significantly, to their unborn babies. If they give birth to a baby with impairments, they are viewed as being irresponsible and made to feel guilty. They also feel fearful about not being ‘good mothers’ and are under constant surveillance by professionals and ‘experts’ who judge their performance as good or bad mothers and potentially wield the power to take custody of the child. The medicalisation of pregnancy and childbirth under western biomedicine is starkly evident in the case of disabled women whose impairments are seen as additional complications to be managed by professionals: their reproductive journeys are characterised by material, ideological and attitudinal barriers that exemplify the devaluation of the disabled identity.

In their study of Norwegian women with a range of disabilities, Grue and Laerum (2002) employ a Foucauldian framework to show how these women resist the dominant discourse of disability as dependence by situating themselves within the discourse of motherhood, thereby constructing themselves as social actors capable of providing care and becoming responsible for the welfare of another human being.

Amongst the important themes highlighted by the authors was the empowering nature of the experience of motherhood and the difference it made to their perceptions of their bodies. They were not viewed merely as impaired bodies in need of medical treatment and improvement but rather as valuable persons capable of producing new life. For those women who had been disabled since childhood, having a child meant that for the first time in their life, they were given the status of adults and not just disabled people. Their motherhood enabled them to ‘stage their lives as gendered persons, as women’ (ibid., p. 676). Building upon Thomas’ (1997/2009) discussion on the need for disabled mothers to show that they are ‘good enough mothers’, Grue and Laerum (2002) demonstrate the care and the stress that goes into the ‘performance’ of competent motherhood and the self-policing that these women do to make sure their performance is perfect. Sometimes, the harsh and unforgiving glare of society refuses to account for the practical difficulties they undergo and the strategies they adopt. The authors cite the case of a wheelchair-using mother monitoring her toddlers at the beach. Because she could not run after them to keep them safe, she tied a long rope around the children and attached it to her wheelchair. As tying a leash on a child is considered unacceptable in that society, and only a ‘bad mother’ would do such a thing, someone reported to the police that she was mistreating her children! Disabled mothers must always be mindful and vigilant of the fact that the safety, health, well-being and psychological adjustment of their children are evaluated against the backdrop of their disabilities and the blame for anything that may go wrong is likely to be laid at their door. The performance of mothering is, thus, a tightrope walk that is carefully negotiated and always tricky.

In her qualitative study of Canadian mothers with disability, Malacrida (2009) examines the contradictions and tensions embedded in the disabled mothers’ performances of ideal motherhood and how women with disabilities reconcile the demands of ideal mothering against the realities of their disabilities. The ‘ideal mother’ is one who performs her multifaceted role as caregiver, teacher, playmate, optimally and perennially. As such, it is a construct that can never be lived up to by mothers, thus amplifying their sense of guilt and disempowerment. She attempts to show how disabled women perform motherhood in ways that will undermine or challenge the perceptions of others and the ways that normative constructs of femininity and motherhood structure their interactions with their peers, professionals and experts and welfare delivery systems. She notes that ‘women with disabilities go to creative and extraordinary lengths in order to be seen as complying with ideal motherhood, perhaps as a way to lay claim to a maternal and sexual identity that society denies them.’ (p. 99) The experiences of mothers with disabilities, as they negotiate the tensions of ideal motherhood, hold up a mirror to the challenges that the mothering ideology raises for all women and the need for a feminist politics that will account for the lived experiences of all mothers and attempt to change it.

These mothers’ stories, regardless of their marital status, socio-economic positions or geographical locations, inevitably acknowledged how their mothering practices reflected their awareness of the ideology of ideal motherhood. Malacrida’s respondents too spoke of how they felt judged and evaluated by non-disabled society and, thus, had to become ‘over-conscious’ of their motherhood performance and of living up to the image. While most women spoke about the difficulties in the performing ideal motherhood role, some of them, particularly those whose children also had disabilities, described their disabilities as enhancing their mothering, as they could intuitively understand what their children were going through.

‘Mother’s intuition’ is regarded as an important ingredient of the idealised mothering ideology and these mothers felt they could lay claim to it because of their own disabled state. While narrating how their bodily differences often interfered with their performance of ideal motherhood, the mothers also demonstrated remarkably creative ways of getting around these barriers. One of the mothers who was housebound and unable to access public spaces and, thus, unable to do many of the things with her son, like taking him to the park or the playground, worked around the problem by providing free day care facilities to her neighbours’ children. In exchange, her neighbours helped her out with her son, thus fostering strong community networks and supports that helped her provide all that an ideal mother was expected to. The disabled mothers consciously performed ‘compensatory mothering’ by ensuring that their children were always clean, tidy and well turned out or by pushing themselves beyond their limits in order to overcome the stigma attached to being a mother with disabilities. At the same time, hegemonic discourses of the ‘good mother’—ever present, endlessly nurturant and always available—were internalised and never questioned. Malacrida speculates that it is perhaps the denial of sexuality and procreation as legitimate experiences for disabled women that make them so eager to be seen as conforming to such an over determined construct that is fundamentally oppressive for all women, disabled or otherwise. Like the women in Grue and Laerum’s (2002) study, Malacrida’s respondents also experienced motherhood as ultimately a fulfilling and enabling experience, helping them to occupy the status of an adult women rather than dependents in need of care.

Limaye (2015) has opined that Indian mothers with disabilities, like their western counterparts, also have faced similar issues of stigma, pressure to conform to the concept of ideal motherhood and various kinds of oppression by family members. In her study of seven mothers with various disabilities, she found that during their pregnancies, the women experienced tension (reinforced by the attitudes of family members and doctors alike) that their children too would be born with impairments. After the delivery of ‘normal’ babies, they felt a sense of great joy and satisfaction. Their parenting experiences revealed their struggle to cope with the stress and strain of raising young children and their innovative strategies to cope with situations. For instance, a mother with visual impairment tying an anklet with a bell on her child’s feet to know where the child went and another mother with hearing impairment rigging a bell with a light bulb near the bed so that she could be alerted by her mother-in-law in the next room when the child cried at night. The author highlights how mothers could draw upon support from their parents, in-laws and friends and the children too who were certainly affected by the negative perceptions society had towards their mothers but over time came to accept their mothers’ disabilities as a part of their lives. She underscores the need for disability organisations to provide services and support for mothers with disabilities particularly in rural areas.

While the studies discussed above reveal the ways in which disabled women attempt to exercise agency and empowerment through motherhood, the following section moves the debate to another entirely different social and situational context where agency over the body and consent for the things done to it are appropriated by medical, legal and social practices that challenge the very personhood and humanity of the disabled person.

Disability, Agency and Personhood: Case Studies of Institutionalised Women ⁵

The reproductive capacities of persons with disabilities are perceived as a threat to ‘normal’ society and various means have been used to control them. Writing on the history of sterilisation of women with disabilities in several European countries, Tilley, Walmsley, Earle and Atkinson (2012) remark upon its continuance with the tacit support of the medical system even in present times. A much cited case in India is the mass hysterectomies or womb removal surgeries conducted on 11 women students from the Government Certified School of Mentally Deficient Girls in Shirur, Maharashtra in February, 1994. The women whose chronological ages ranged between 15 and 35 years reportedly functioned at the level of three- or four-year-old children. The justification given for the procedures by the facility’s authorities was that this would safeguard the women from unwanted pregnancies and the inconvenience of menstruation. Activists protested against what they believed to be a violation of the rights and bodily integrity of women under state control; they felt that conducting such a major surgical procedure was unwarranted and could not possibly guarantee of the safety of the women from sexual assault. The facility was described by activists as a horrific hellhole, reeking of urine and excrement where inmates led bleak, dreary lives, devoid of any kind of stimulation or engaging activity. No training in self-help skills, basic literacy or vocational skills was imparted that would help them lead a dignified life. The girls and women suffered from anaemia, skin infections and other clear indicators of poor care and bad hygiene. The absence of staff compounded the problem further. A report prepared by a group of non-governmental organisations, In The Guise of Human Dignity (Women’s Health, 1994), was a damning indictment not only of abysmal conditions at the Shirur centre but the appalling and callous attitude towards persons with disability in general. Given this state of affairs, it is hardly surprising that the women residents were seen as troublesome bodies to be managed and controlled rather than as persons with rights and entitlements to a dignified and comfortable life despite their cognitive limitations.

The voices of the affected women did not find a place in the discourse; it was the doctors, activists and administrators who battled out the ethical, medical and legal aspects and offered contradictory understandings (Sunder Rajan, 2005). The activists’ perceptions of the feelings and emotions of the women were countered by the versions of the officials running the facility who highlighted the difficulties experienced by the women in managing their periods and the risks of pregnancy. The lack of engagement, the subjectivities and consciousness of experts, who took decisions on the behalf of the women, were a testimony to the devaluation and dehumanisation of the disabled subject.

A report in The Indian Express (22 January 2008) published in The Punekar, revisiting the events of 1994, painted a less dismal picture. The running of the centre was handed over to social workers in 1997. Conditions had improved—there was more staff available to run the home and the women who had undergone the procedure in 1994 were reported to be doing well with no medical complications. The nun, who was in charge of the centre, felt that for some women with profound disabilities, a surgical removal of the womb was necessary and humane, as they were just not able to manage their periods. For many non-disabled women too, monthly periods are frequently painful and debilitating and if they wish to opt for womb removal, they are free to do so. The jury continues to be out on the vexed issue of rights over bodily integrity and reproductive freedoms, on the one hand, and the very real difficulties and dilemmas of caregivers of disabled persons (usually women), on the other hand, who must assist their charges in maintaining menstrual hygiene, changing soiled clothing and so on. The experiential reality of the reproductive female body cannot be captured clinically within a medical or legal discourse; the voices of diverse women must be taken into account.

The Chandigarh Nari Niketan case further complicates these debates. The custodial rape and resultant pregnancy of an intellectually disabled 19-year-old woman in March 2009, at a government-run home for destitute women, by staff working in the facility created a public outcry. The issue of whether the young woman who suffered from several physical ailments, in addition to her mental impairment, and had no family or any other means of social support, was fit to carry and give birth to a baby was a sensitive and contentious one. The Chandigarh administration and the Punjab and Haryana High Court had to weigh the legal issues of informed consent and the ability of mentally disabled persons to make decisions about their futures and those of their unborn children (see Rastogi & Yadav, 2010). A three-member committee was formed by the director of the Government Medical College and hospital to assess the young woman’s mental condition: she was reported to be ‘mildly mentally retarded’ with the mental capacity of a 9-year-old. A multi-disciplinary medical board, constituted a few days later, then went into the details of the case. The board felt that the woman’s physical ailments and impairments were such that they might be genetically transmitted to the foetus or endanger the health of the mother. The mental condition of the woman was such that she was not deemed capable of understanding how she came to have a baby inside her. Her destitute status and the bleak future prospects of a child of a victim of sexual abuse were also considered. The board, therefore, recommended the medical termination of the pregnancy. The High Court, however, appointed yet another committee consisting of three doctors, including a psychiatrist with a judge as a co-ordinator. According to the committee, there were no serious physical risks involved in the pregnancy. However, they felt that the woman was neither socially nor emotionally capable of understanding what motherhood meant. She thought of her unborn baby as a future playmate and seemed quite unaware of the precariousness of her situation. The committee was unable to ascertain whether the woman’s surroundings were conducive to her making an informed choice about herself and her unborn child. On 17 July 2009, the High Court ordered the Chandigarh administration that the pregnancy be terminated. The case took a new turn when an advocate took an interest in the case and helped the young woman move the Supreme Court to seek the protection of her unborn child.

After listening to arguments on both sides, the Supreme Court stayed the decision of the High Court. The woman was permitted to go ahead with the pregnancy. The Supreme Court’s decision was based on the following considerations. First, whether it was correct on the part of the High Court to direct termination of pregnancy without the consent of the woman in question. Second, even if the woman was assumed to be mentally incapable of making an informed decision, what were the appropriate standards for a Court to exercise parens patriae jurisdiction? If the intent was to ensure the ‘best interests’ of the woman in question, the Court held that the direction for termination of pregnancy did not serve that objective (Tripathi, 2014). It is also pertinent to note that the woman’s pregnancy was perilously close to the legal limit for medical termination, that is, 20 weeks.

The Nari Niketan case is cited as a crucial landmark in moving the discourse around disability and the lack of agency of the subject to one driven by recognition of personhood and rights. The labelling of institutionalised women as ‘inmates’ suggested that they were on par with prisoners in a jail or dangerous persons who deserved to be locked away from public view rather than ‘residents’ of shelters or rehabilitation homes where they were entitled to receive care and services by virtue of being citizens. Ironically, the institution mandated with her care and safety was the site of her violation and its own employees actively colluded in the crime. The presumed inability of the young woman to understand the enormity of what had happened to her and the presumption that having the child could result only in further deterioration of her situation were compelling reasons for ordering a termination. Her resistance prompted the legal system to review the ruling and restore the girl her rights over her body and reproductive decisions. Her disability was not deemed to disqualify her as a potential mother; at the same time, it was acknowledged that she would need support and help in discharging her functions as a mother and that it was the duty of the state to provide her with adequate and appropriate help.

On 2 December 2009, a baby girl was born. A recent article by Tripathi (Frontline, 7 February 2014) suggests that both mother and child are doing well. According to the report, a special educator visits them regularly; the mother is imparted basic self-help and vocational skills and the child attends a playschool. The young woman, after initial hesitation, learned to handle and care for her child and is reportedly an affectionate mother. The little girl is likely to be admitted to a residential school when she is older. The circumstances around her birth brought into view the pathetic condition of state-run institutions and the need to make them more open and accessible to public scrutiny so that the routine and unreported abuse taking place behind their walls would be exposed and prevented.

The need to engage disabled ‘inmates’ to integrate them into the life of the community and to make available to them a range of life experiences is underscored. India is a signatory to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD-2006) that views disabled people as equal and contributing members of society. Apart from recognising persons with disabilities as equal holders of all rights, the UNCRPD places them at the centre of all rights. It is for this reason that even though families are seen as the major support for persons with disabilities, the rights and entitlements still belong to the person (ibid.). While the exercise of their rights may be problematic for persons with profound disabilities, the attempt as far as possible should be to ensure that they receive support and help to make informed decisions and their personhood and agency be respected.

The young woman in Chandigarh was reported to have a ‘mental age’ corresponding to that of a 9-year-old, and thus she was deemed unfit to take appropriate decisions regarding her well-being and that of the child she was carrying. The equating of ‘fitness to mother’ to a western biomedical construct, namely the Intelligence Quotient, denies a whole realm of emotional experience and is a reductive and simplistic way of measuring ability and competence. It exemplifies the application of the medical model of disability to the hilt and sidelines the role of social and community structures in fostering or impeding competence.

Concluding Remarks

The experience of disability complicates the understanding of motherhood as a ‘natural’ and normative rite of passage signalling a girl’s entry into the adult world and her incorporation into a gender regime where her role as a reproducer and nurturer is paramount. The disabled, deficient female body is viewed as an abomination which is itself in need of care and incapable of giving or receiving sexual pleasure or bringing forth new life. While women with physical disabilities are regarded as ‘asexual’ and unattractive, women with mental or cognitive disabilities are seen to be sexually unregulated and vulnerable to abuse and, therefore, in need of medical and social interventions ranging from sterilisation to confinement in institutions where their sexuality and reproductive capacities may be controlled if not erased. Scholarship at the intersections of gender and disability studies has sought to illuminate the ways in which women with disabilities challenge these understandings, and thereby complicate and enrich discourses on embodiment and motherhood. At the same time, hegemonic, patriarchal ideological constructs of ‘good’ and ‘bad’ mothering practices appear well entrenched and internalised, and disabled women attempt to reclaim agency and feminine identity by conforming to these constructs to the best of their ability. The growing medicalisation of disability in contexts like India has resulted in western constructs of ability and intelligence being mechanically applied. Disabled women’s bodies become the objects of medical and legal discourses about reproduction and sexuality, often at the cost of lived, experiential realities and diverse socio-cultural contexts. This compels us to reflect upon the disciplining and punitive power of patriarchal social structures and the modern state over non-normative bodies and will hopefully lend urgency and a critical edge to our understandings of what constitutes humanness and personhood.