31 Gender and Disability

Anita Ghai

Introduction

When I wrote the book Disembodied Form (2003) a painful and disillusioning realization was the recognition 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. To some extent my attempt was rewarding to initiate an inclusive discourse that would try to make universal sisterhood a distinct possibility. However, disabled women who can have plural identity markers make their daily experience perplexing and difficult. For women as well as disabled women, the rise of neoliberal states has deepened already severe oppression and exclusion on the basis of bodily ability and gender (Chouinard).

Within India the fact that there might be a gender dimension to disability has only recently been realized. (Ghai 2003; Hans &Patri 2003; Das &Agnihotri (1999) indicate that the incidence of disability is intersected (or influenced) by gender. The extrapolation of the available statistics, they have indicated that disabled women are marginalized much more than the disabled men. Disability legislation also adopts a gendered approach, with the result that out of 28 chapters outlining various issues, not a single one addresses the problems of disabled women.

While the Indian cultural reality has never been favourable to the birth of daughters (as is clear by the consistent fall in the gender ratio) the onset of disability, in daughter is a fate worse than death. While women are fighting hard for equal rights in a patriarchal order, disabled women are rarely recognized as persons. The society that accepts the able-bodied norm subjects the disabled girls and women to the most inhumane treatment possible. This holds not only for those whose disability is very severe, but also for anyone who is different from the ideal form. Thus right from the childhood, disability imposes a subordinate status on them, and increases the likelihood that their rights will be ignored. Women with disabilities also face discrimination at the hand of the feminist world, which as a frame to understand women’s lives and position in society, has not benefited disabled women the intermingling of disablement and gender marks the reality of a woman with disability in India. Opportunities for improving the quality of life of a disabled girl are virtually non-existent. Already living a life of subordination without education and employment, women can do without the burden of disability. As a mother lamented, ‘Wasn’t it enough that we have a hand to mouth existence? Why did God have to add to punish us further by giving a Langri (crippled) daughter’ (Ghai 2001: 31).

In a culture where being a daughter is considered a curse, being a disabled daughter is a fate worse than death for she has to contend with both her role as a daughter, when what was desired was a son, and with her disability. The desire for sons has to be understood in the context of the ritual value of sons as well as the social and economic burden in bringing up daughters (Johri 1999: 78). The construction of daughter as a burden is rooted in the cultural milieu that looks at daughters as Parai (Other). As Johri elaborates, ‘One of the religious duties of the father is Kanyadan, the unreciprocated gifting of the virgin, to the husband and the family. Giving dowry becomes a part of this ritual’. However, the implicit understanding in this practice however is that whatever you are giving will be perfect. The disabled girl, when offered to a prospective son-in-law has to be compensated accordingly. If compensation is not possible, then compromises like being married to a widower have to be made. Disability in a son, on the other hand, though traumatic, will still be more acceptable as he does not have to be given away.

In the chapter on conversations with culture, I have spoken about the negative rendering of a disabled woman (Doniger and Smith 1991, 205–06). Consequently, a culture in which arranged marriages are the rule, it puts disabled woman in a difficult position. While there is a possibility of resistance (however difficult) to this cultural arrangement for the ‘normal’ women, for disabled girls it is an uphill task. Some disabled girls in the rich or middle class might be able to negotiate the difficulties inherent in the arranged marriages, albeit with a great deal of compromising. Disabled sons retain the possibility of marriage, as they are not gifts but the receivers of gifts. Disabled as well as non-disabled men seek ‘normal’ women as wives, and therefore participate in the devaluing of people because of disability.

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 foetus. The 2011 Census indicated a continuing preference for male children over female children. The latest child sex ratio in is 914 female against 1,000 male — the lowest since Independence (PTI Mar 31, 2011). In a society where there is widespread female abortion, aborting imperfect children will not cause any stir or rancour. While there is an on-going discussion of the ethical contradictions that prenatal sex testing poses for feminists, prenatal testing to identify and abort children at risk for disabilities does not get addressed (cited in Ghai 2003: 69). For disabled women themselves, these issues become secondary because cultural stereotyping denies them the role of motherhood. Disabled women are, however, denied the possibility of this fulfilment, as marriage and procreation as both difficult achievements in a socially restrictive environment. The denial of women’s ‘traditional roles’ to disabled women creates what Fine and Asch (1988) term ‘hopelessness,’ a social invisibility and cancellation of femininity that can force the disabled women to pursue, (despite all helplessness), the female identity valorised by their given culture but denied to them because of their disability. A great deal of thoughtful work by Indian feminists analyses the impact of the evaluative male gaze. However, the essential differences between being sexual objects and objects of the ‘stare’ have not been understood. If the male gaze makes normal women feel like passive objects, the stare turns the disabled object into a grotesque sight.

Disabled women contend not only with how men look at women but also with how an entire society stares at disabled people, stripping them of any semblance of resistance. Davies (1995, p. 128) cites a scenario described by Anne Finger ‘s interpretation of a imagined meeting between Rosa Luxemburg and Antonio Gramsci each of whom are disabled, with Rosa being given the temporary power of the abled gaze, we can measure startled reaction as she glimpses him the ‘misshapen dwarf’limping towards her in a second hand black suit so worn that the cuffs are frayed and the fabric is turning green with age, her eye immediately drawn to this disrupting in the visual field; the unconscious flinch; the retaliating that she is staring at him and to rapid turning away of the head. And then the moment after, the consciousness that the quick aversion of the gaze was as much of insult as the stare, so that she turns her head back but tries to make her focus general, not a sharp gaze Comrade Rosa.

Davis points out the irony in that Rosa has walked with a limp her entire life, and yet she found this abnormal. This brings a throbbing pain in me when I realize that to remove stigma is next to impossible. When books say am not I a woman, I get confused if I could say am not I a disabled? Few years back I went to see the marble sculpture of Alison in Trafalgar Square. My first reaction was that it was a wonderful example is found in the life of the disabled artist Alison Lapper. Apparently, the artist, Marc Quinn, wanted to introduce some femininity. The adjacent Nelson’s Column seemed to be an epitome of a phallic monument. A significant statement, which was entitled, ‘Alison Lapper Pregnant’ could be appreciated. Nelson who was ‘crippled and blind’ is thought of as a ‘war hero’; his disability doesn’t enclose him and pity is not aroused. A review told me that the able-bodied artist, Marc Quinn, said: ‘The sculpture makes the ultimate statement about disability — that it can be as beautiful and valid a form of being as any other.’

My contention is that indeed ‘disability’ as a social category is problematic, though beautiful but extremely complex. The statue in not only personified courage and bravery but it also signifies sexuality and maternity. I discovered that she is an artist in her own right, who has created an inspirational series of photographic self-portraits with her child. The statue in a way is a portrait of resistance. Whilst this sculpture seems to transgress normative ideals, yet it reminded me of the ‘damaged’ part. In a way the representation of a disabled body is opposition to ideas of beauty.

In a society in India any aberration from a normally accepted archetype is seen as a marked deviation, the impaired body becomes a symbol of imperfection. ‘The ramifications of such historical rendering are to be found in the North Indian Punjabi culture, where, although girls are allowed to interact with their male cousins, they are not allowed to sleep in the same room. Disabled girls, on the other hand, are under no such prohibitions’ (Ghai 2003: 72). This reflects what Harlan Hahn (Thomson 1997, 25) calls ‘asexual objectification’, and also evidences the disregard of the dangers of sexual violation to which disabled girls are exposed. The assumption that sexuality and disability are mutually exclusive also denies that people with deviant bodies experience sexual desires and refuses them recognition as sexually typical despite their differences.

Indian feminist scholarship has looked at embodiment along the axes of caste, class, and historical phases such as the impact of colonization; however, the impaired body has not been considered as having analytical consequence. As Niranjana (1997: 106) points out, Focus on the body has been a symbolic one where the body is perceived as sign or code important to the extent that it is speaking about a social reality other than itself. Suggestive as it may be to speak of the body as representing encoded social meanings, as an image of society or even a metaphor for society, the question remains whether these perspectives can acknowledge the materiality of bodies, not merely as they are formed/represented in a culture, but how they constitute the lived reality of persons.

Though this analysis takes up issues of cultural spaces and the female body, there is no mention of the disabled body. This omission reflects a historical practice that continues to render the disabled invisible in a manner very similar to the invisibility experienced by blacks in a white racist society. It is ironic that feminists engaged with the issue of difference united in their attempts to empower the powerless, and resolved to transform social inequalities, have not picked up on the issues concerning the meaning of impairment for disabled women. While the disability movement’s failure to acknowledge disabled women can be fathomed as reflecting the patriarchal character of a society it accepts and aims to be included in at least within India, its disregard by the feminist movement, which claims objectivity through its theoretical deconstruction of oppressive social suppositions, is less understandable.

What is especially anguishing is that Indian feminist thought fails to recognize that the problematization of women’s issues applies equally to disabled women’s issues. In principle, some disabled women might have benefited from the activities of certain women’s groups, but no documentation exists of specific instances. On the other hand, ample evidence abounds that disabled women are the victims of domestic violence and sexual violation. However, when the national Indian media gave widespread coverage to a story about a woman with cerebral palsy being abused by her father, women’s groups gave no more than perfunctory response. Further, Indian feminist scholars have not attempted to develop theoretical responses appropriate to the situation of disabled women.

Historically, the only instance that evoked a reaction from Indian women’s groups was when 14mentally-challenged girls were compelled to undergo hysterectomies in the Sassoon general hospital in Pune, (a city in the state of Maharashtra.) on 5 February 1994. The instance was reported in the major newspapers on February 24. The intervention from women’s groups came after these press reports. On following the case, I found that the institution was catering to a large rural community that left developmentally disabled girls under institutional care. The girls, however, were not allowed to wear pajamas with drawstrings as well as sanitary napkins with belts, as it was claimed that they might use these strings to commit suicide. The records regarding the stay have not been kept very carefully, so it is difficult to provide the exact details. What is important is that it was the absence of protective gear, such as pajamas, undergarments, and sanitary napkins, made the management of the bodily functions such as menstruation difficult. To deal with the problem of menstrual hygiene, the hospital decided to go ahead with hysterectomies. Notwithstanding this paternalistic deprivation of women’s necessities, boys in the same institution were issued pyjamas complete with drawstrings that too could easily be turned into a noose than any sanitary napkin could be. However, in their case the danger of suicide was apparently not perceived. Sadly this instance was not translated into a broader effort to open a dialogue about the enforced sterilization of developmentally disabled women. This failure indicates that Indian feminists still do not see women with disabilities as an important and enduring constituency. Though there are efforts (The Hindu, Jan 01, 2005) which sought a ban on forced hysterectomy for mentally and physically challenged girls by the NCW and the CBR Network, a non-governmental organization. They have demanded a special charter for protecting the rights Marginalized Disabled Lives F 145 of persons with disability with separate provision for protection of rights of women with disability.

While there is a strong emphasis on mainstreaming women’s concerns for self-development in the national policy documents on empowerment of women, the paradox of a hierarchy within a hierarchy is evident because discussions about certain groups of women considered lower class and caste, tribal, and minority, continue to be couched in ‘welfare’ terms. This reflects the skewed attitude of mainstream feminists, who while sensitively exploring distress as a major component of a woman’s life experience conveniently leave disabled women out of their focus. There have been changes in the last decade as issues of disabled women have been included in the Women’s movements. There have been some gains in participation as well as inclusion in the decision making of some organisations.

Initially the disabled women were speaking mainly to the converted, but being in a conference did provide the opportunity to listen to other disabled women talk about their lives and to understand that there are feminists with disabilities who were ready to work together to bring about change in the lives of their fraternity. The 2008 Women’s Studies conference went a step further and discussed disability issues in a plenary, but still there were only two women delegates who were disabled among almost 500 women. Thus, while the feminists’ fight against oppression in India is for recognizing disability issues, it is not yet fully cognisant of them. Although the conference was ‘accessible’, access was defined in a limited way. The toilets were either too far away or not accessible. In another conference in Mumbai where disabled women were present in large numbers, many workshops were held in locations that were unreachable, with no elevator access. Inclusion surely means more than just making nominal arrangements for those of us living on the periphery.

For the first time, the mainstream Journal of Gender Studies bought out a special issue on Disability, Gender and Society (May/August 2008, Volume 15, No 2, published by Sage). Though a lot more work needs to be done, this is a welcome starting point. While there are sensitive women who have heard the voices of their disabled relatives, colleagues and friends, within the broader feminist discourse and practice a certain tokenism prevails. To really hear disabled women’s voices, the women’s movement has to acknowledge the social, economic, communication as well as architectural barriers that prevent disabled women from sharing their stories and engaging in a public discourse. It’s time that the women’s movement interrogates able-ism. This is seen in women’s a service that are not physically accessible or that assume that accessibility is just a wheelchair ramp and nothing more. For example, for women who are hearing impaired or visually impaired, accessibility may mean using sign language or Braille format.

Able-ism is also reflected in the kind of language that non-disabled feminists use when referring to feminists with disabilities, as for example, ‘you are so brave’ or ‘it’s really wonderful that you were able to get out and come to this conference. However a lot is needed, as women studies departments have not included issues of disability. It could be argued that I am weaving a where there would be a possibility of real dialogue between the by feminists and women’s groups and disabled women. It isn’t that I am ignoring the possibilities of resistance, which in the face of no recognition can only be attributed to a sheer will to survive. Taking this into consideration, I could argue that women with disabilities have formed support groups and are in the process of challenging dominant constructions of disabilities.

Also Indian association of Women Studies created funds, which helped in creating a module on gender and disability. It also went to University Grants Commission and in a way the module was accepted However women studies departments will take a long time to address disability Also, owing to the absence of discussion among disabled women themselves, no group exists to collectively pursue the concerns of disabled women, and thus to influence both the disability movement and the women’s movement. Right now the voices of disabled women are restricted to academic settings, where a double oppression hypothesis is expounded. This hypothesis takes the standpoint that disabled women experience a double disadvantage, as they fare worse than either disabled men or nondisabled women socio economically, psychologically and politically. Disability compounds their already marginal status as women.

Many feminist thinkers in the field of disability have objected to this ‘double disadvantage’ approach since its literature does not empower disabled women. Says Morris, ‘I always feel uncomfortable reading about our lives and concerns when they are presented in these terms’. When Lonsdale (1990) writes, For women the status of ‘disabled’ compounds their status of being female to create a unique kind of oppression, I feel burdened by the disadvantage, I feel a victim . . . Such writings do not empower me. We have to find a way of making our experiences visible, sharing them with each other, and with non-disabled people, in a way that — while drawing attention to the difficulties in our lives — does not undermine our wish to assert our self worth (1996: 2).

While Morris is absolutely right in her stance, the problem is that even the double disadvantage hypothesis fails to produce concrete action as the outcome of the feminist discourse, and practice does not move beyond tokenism and rhetoric. The struggle in India is very similar to the battle that, feminism which was cognizant of differences between women, engaged with as a political movement. It had to fight continuously for mainstream feminism to acknowledge the dangers inherent in adopting the universal category of ‘woman’ — and by default the exclusions of those living on the periphery and margins. Says Elizabeth Weed (1989, 24), For those outside mainstream feminism, women’s experience has never ceased to be problematic. The common ground of sisterhood long held as white feminism’s ideal was always a more utopian than representative slogan. Worse, it was coercive in its unacknowledged universalism, its unrecognized exclusions.

Indian disabled women experienced this exclusion when feminist theory and practice in India continued to ignore their experiential realities of discrimination, ignorance, and neglect. The feminists reinforced the construction of disabled women as being outside the hegemony of normalcy. Consequently, the much-needed political action has not been forthcoming. The resistance offered by disabled women has only led to a superficial acknowledgment of differences, with an implicit assumption that the core issue is gender. The perceived need is, therefore, to raise the gender issues presumably adequately enough to address all women’s lives regardless of their backgrounds and differences. At least this recognition is responsible for the emergence of a discourse about difference; but I cannot ignore the reality that this discourse has not been able to effect much, if any, change — either in increasing acceptance of disabled women’s concerns in social policy or in enhancing the quality of their lives. According to Nivedita Menon (2000), a more fundamental, reason for the total absence of disability as an issue in the Indian women’s movement — and the comparative lateness of its emergence in Western women’s movements — could be that feminists all over the world have usually assumed ‘women’ to be a category that is self-evident. In one sense this has been the internal colonization. That is, there is an unsupported assumption that all women, regardless of their differences from one another, have obvious shared concerns.

This abstraction of ‘women’ emerged from a feminist positing of ‘difference’ as a challenge to the abstract category of ‘citizenship’ which assumed masculinity as the norm. Up to the late 1970s, ‘sisterhood is global’ seemed an unquestionable feminist truth. The challenges from women of colour and other stigmatized and marginalized groups of women showed the category of ‘women’ to be another abstraction, which in turn assumed the white, middle-class, heterosexual woman (without disability) to be the norm. In India, this kind of challenge has come from feminists of minority communities. The charge is that the women’s movement has assumed the Hindu upper caste woman to be the norm, and this critique has emerged most clearly in the debates over the Uniform Civil Code (UCC). The debates were regarding the demand for a common set of personal laws that would apply to all religious communities in India. The opposition came from the belief that the emerging uniformity would essentially represent the voices of majority (which in this case was the Hindu women), thereby marginalizing the women from minority groups.

Menon, a vociferous activist in the women’s movement and a political scientist by profession, feels that the invisibility of disability within feminism occurs because of mechanisms similar to those that have made women in general invisible in the larger society. But as a feminist who felt disturbed by the neglect of disability issues, she thinks that the movement has the potential to grow and change. Another reason for the failure to represent women with disabilities is that within the Indian women’s movement there are far too many issues and far too few resources. Consequently, action has been oriented to the dramatic patterns that resonate in the lives of the majority of women who are able and normal, rather than to the minority who fail to exercise voice or agency. Notwithstanding the current reality of the exclusion of disabled women within the Indian women’s movement, I would argue that simply deciding to include them is insufficient. The problem cannot be resolved so easily by merely adding on disabled women as another category to the list of matters or kinds of issues requiring attention. Offering a feminist account of disabled girls is problematic because it requires including them in the discourse. However, writing a subject (for example, disabled women) into the on-going discourse necessitates a certain exercise of power to construct that subject in some form, to give her shape, and to breathe life into her. This cannot be accomplished without knowing how she might construct herself.

This process thus requires certain reflexivity. To explore the possibilities authentically and adequately requires that the process have a dialogical character. It is vital that both feminist discourse and practice engage in a concerted dialogue with the disabled women and the disability movement, so that a more inclusive theory as well as practice can emerge. To quote Mairian Corker (1999, p. 639), It is often argued that theories are too complex for ex post facto explanation rather than for use by disabled people, they may lead to confusion and the paralysis of analysis. This is always a danger, if complexity of life is overemphasized, and if the need to understand fully is placed ahead of the need to act more effectively, because disabled people can be turned into interested spectators, rather than proactive participants of a strong social movement. Theories which reduce or simplify disabled people’s experience particularly those which fail to conceptualize a dialogic relationship between disability and impairment can have the same effect.

The solution of these problems might come by following the example of Leonard (1997) in creating a paradigm of communication rooted in discursive strategies rather than structure. Failure to create these spaces even unintentionally does not alleviate the asymmetry of power relations. Feminist discourse has developed without disabled women taking a hand in shaping it. What now can be done about feminists’ inattention to disabled girls and women, and how would feminist discursive attention look and read if, initially, they had been involved in its development? Do we need a different kind of feminist theory to account for disabled women? As Rosemarie Garland Thomson observes (1997, p. 24), feminist theory can challenge the persistent assumption that disability is a self-evident condition of physical inadequacy and private misfortune whose concern only a minority of women. Feminist disability praxis would uphold women’s right to define their physical differences and their femininity for themselves, rather than conforming to the social interpretation of their bodies. Such praxis could address some of the specific issues currently addressed by feminists, ones that might look different when seen through the lens of a disability perspective.

One matter that, though within the ambit of feminist thought, seems different from a disability perspective is the issue of caring for the mothers of disabled children in India. As I elaborate, ‘Although the stress of impairment impacts upon both the parents, it is usually the mother who bears the brunt of the child’s disability’ (Ghai 2000, p. 47). Instances abound where women have been divorced, abandoned, or tortured because they have given birth to a disabled child. Given the preference for sons, even here blame of the mother is more severe in instances of a girl child. The fantasy of maternal omnipotence holds mothers responsible for providing the caring.

Home care is usually the only option; there often is no question of choice. Indian feminists who have debated over the ethics of caring, and who are now in the process of initiating a debate over equality in caring (Davar 1999, p. 207), have not taken note of the conditions in which disabled people, and especially girls, are placed. Within the traditional Indian system, the mother has been a source of succor for the children, especially for girls with disabilities (Ghai 2001, p. 21). In the absence of social and community support, disabled women have relied largely on the caring provided by mothers, who undoubtedly have carried the extra burden. While it is perfectly justified to engage with their experiences of oppression in caring, the attempt to destabilize traditional notions in the absence of adequate alternative provisions might end up working against disabled women. In such a context, it will be worthwhile to engage with the cautionary note given by Anita Silvers (1995, p. 52)    that ‘far from vanquishing the patriarchal system, substituting the ethics of caring for ethics of equality threatens an even more oppressive paternalism’

Another significant area where feminist questioning would be invaluable concerns the area of independent living as espoused by disability theorists in the West. In the absence of education, employment, infrastructure, and a Social Security system, autonomy is a formidable goal for women in India to attain, and more so for disabled women. The resolution of any issues concerning disability has to be in the context of the family and community. Indian feminists, with their grasp of the Indian reality, are equipped to devise options that can merge with the specific Indian context of the familial and the social.

One possible solution would be to apply Susan Bordo’s (1990, p. 138) view that the concrete experiences of exclusion have neither to be grounded in theory nor given a theoretical response. Rather, as new narratives began to emerge, the major task is to tell the story of diverse women’s experiences in as truthful a manner as possible. The only requirement is to listen, to become aware of one’s own biases, prejudices and ignorance, so that a process of stretching the borders of what Minnie Bruce Pratt (in Bordo 1990, p. 138) calls the ‘narrow circle of self’ can begin. As Bordo explains, ‘No matter how attentive the scholar is to the axes that constitute social identity, some of the axes will be ignored and some selected’ (Bordo 1990, p. 140).

This is an inescapable fact of human embodiment, as Friedrich Nietzsche was the first one to point out: ‘the eye . . . in which the active and interpreting forces, through which alone seeing becomes seeing something, are supposed to be lacking [is [an absurdity and a nonsense. There is only a perspectival seeing, only a perspectival knowing’ (Nietzsche 1969, 119). Perspectival knowing is never really pure. Our political, social, and personal interests always influence it. Even in acting on the desire to embrace our differences, we are unavoidably centric.

Mere recognition of difference does not assure that we will construct an adequate representation of difference. Further, constant attention to difference might create and construct others who are unheard of and therefore unfamiliar. Thus difference is dangerous — and every new context demands that we re-examine the difference. However a significant questions is what Sharon Lamb (1999) refers to a common tendency in people to accuse others for what is not right in the disability world, posing this question in view of actuality that an accusing stance does not seem to assist, given that it is not possible to both accuse and encourage another to take responsibility for their actions at the same time. As Lamb suggests, as much as we might wish for the clarity of vision a fault and blame position provides, it may be impossible to deal with the complexities that make up the day to day lives of disabled people and those who support them from within this view. Lamb also talks about the zero/sum position blame reinforces and how becoming locked into this position means that we cannot explore questions such as: How far are individuals controlled by the conditions of their lives? At what point in time could the (blamed) person concerned have had a choice to take a different road, to make a different decision.

Conclusion

Thus, what is needed is not merely a strong commitment to create spaces where different voices can share their realities and be heard, but also an active integration of differences among and within women. However, for this possibility to become a reality, feminist discourse would need to go beyond a mere recognition of binaries. What is required is a consideration of a multiple constraints that inhibit the articulation of difference. This task is an arduous and a complex one, especially when heterogeneity serves as a mere tool to hide homogenous understanding. Hope is essential in the struggle for change. It involves a recognition of the unacceptable nature of the present conditions and relation. It arises from a within social context characterized by unacceptable inequalities and discrimination. It is of paramount importance that hope is grounded in an informed understanding of the social conditions and relations of the past (Barton2001: 3‒4).

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