By Ishita Jha
Edited by Namrata Caleb, Senior Editor, The Indian Economist
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007, brought a paradigm shift in the very way disability is conceptualised and brought into focus issues of legal capacity, equality, and dignity and encouraged a more complex view of disability. This view looks as disability as not just located within the individual but also takes into account the role of the social environment in disabling an individual. The UNCRPD urged the member states to ensure the full actualisation of all human rights and fundamental freedoms for all persons with disabilities without judgement on the basis or degree of infirmity.
With such an explicit social dimension added to the framework disabled people in India now have renewed hope. At the core of this alteration was the shift in the focus from the person as an object of charity to a subject with rights where correcting attitudinal obstacles that lead to disregard, unawareness and discrimination would be the official aim. Due to the international pressures and demands by the disability sector the Ministry of Social Justice and Empowerment established a Committee in 2010 to draft a new law which would be in sync with the UNCRPD. The new draft bill was submitted to the Ministry in June 2011 after sessions with groups representing persons with disabilities as instructed by the UNCRPD.
However, this being India, not surprisingly, three years hence the submission, debates are still going on alongside many revisions of the bill resulting in its dilution. Over time, many discrepancies have also come up which have made consensus a severe difficulty. This article will talk about certain issues that are under debate briefly and then move on to discuss disability at a more conceptual level discussing certain nuances that I believe most of us remain unaware of.
One of the foremost challenges is posed by the fact that disability embodies a wide spectrum and variety of conditions. The term is meant to serve as an umbrella term that includes in its shade all impairments, congenital and acquired. But this very wide range of diversity is now posing a challenge because each group is busy in clamouring and lobbying for their own focused issues from a narrow and individualistic perspective which has led to not only many clashes but also to ignoring or favouring of certain groups. This has resulted in the mainstream disability sector’s neglect of “marginal” disability groups, creating a further bias for certain groups. There are many other issues like ambiguity of certain definitions of particular conditions which create a foundation for the contention over “degree” of disability which just imply a repackaging of the old PWD act. There are certain families who are concerned over the issue of legal capacity where a legitimate status for care givers is desired for people who have high support needs. Another apprehension in the several years of the drafts has been about the “welfarist” approach to disability that exists in India which detects the ‘problem’ within the individual and disregards the highlighting of certain social barriers that have been brought into focus by the UNCRPD. Thus there is a certain tension between the social model which guides the framework of UNCRPD and the medical model by which definitions tend to be given by. Due to diverse groups claiming for the inclusion of their variety of rights, facilities and entitlements the bill appears to include a cross section of voices but because of that it also remains vague in keeping a human rights- based approach. Thus there are problems regarding the very attitude of definitions and what guides them. There have been several articles trying to draw attention to the fact that the medical model continues to guide the legislation in many ways. So while a wide range inclusion of disabilities is a fact to celebrate about, the fact these disabilities become defined by a medical outlook suggests a watering down of the spirit of UNCRPD. Then there are issues about who will have the power to define. Medical professionals, officials, administrative officers, or activists? Many people have also raise their voices about how the current draft ignores barriers like gender, caste, tribe and ethnic identity that could restrict their access to schemes and resources thus ignoring the social environment as a “disabling” element again. Some people argue about how the bill due to its lack of consultation with the grass-root groups have gained an urban elitist flavour pointing out about how the debates centring around this issue is dominated by English speaking groups and take place only in major cities. So while some people demand for more sync with URCPD spirit there are some people who notice that the bill needs to reflect pan Indian issues that are grounded within our social-cultural milieu instead of simply following an international set of guidelines. Thus, as you can see the list of debates and contentions are endless and intermingling creating clashes within clashes.
However after devoting the opening of this article to the debate surrounding the bill I would like to move on to a discussion which is more fundamental to engage with. Before the knowledge about the bill, comes the knowledge about the nuanced existence of people who live with disabilities, problems posed by certain labels, creating of the “Other” and things like that which need to be brought out in the open and understood by all.
Disability when thought about is always thought about from a perspective of rehabilitation. The definition of the term is couched in language that uses terms like “lack” or “deficit”. This “lack” of a certain requirement becomes then a source of discrimination where the difference is stigmatised. Now whenever we talk about disability, it implies the inability to perform a certain function according to what is considered “normal”. Before we get into the problem of defining what “normal” is, I would like to begin with trying to develop our understanding of the cultural construction of bodies and identity by redefining “disability” as a culturally encoded physically justified dissimilarity to be considered along with race, gender, caste and ethnicity. Beyond the realm of assailing stereotypes I wish to interrogate the very conventions of representation and unravel in the process experiential realities of disabled people which by the medical definition has been de-emphasized. The “disability” that roots the problem within the individual leaving it subsequently to the person to adapt or be “cured” is the one defined by a medical model. The social model shifts the emphasis from the individual to the environment which makes the impairment into a disability. A person is not disabled by his blindness to ascend the stairs, he is disabled by the lack of ramps in an environment built according to the needs of the “normal”. It claims that it is the society also that disables people with impairments, and consequently any significant solution must be focused on societal change rather than at the individual level. Moreover when discussing disability, the cultural context is important because what is considered disability in one social environment might not be seen as something “lacking” in another cultural milieu. For example a “simple” farmer in a rural landscape with his ability to do daily physical labour will fail to conform to the normal standard of an educated prototype of an urban citizen. Disability for people generally implies certain accepted notions about its absolutely inferior state or a condition of misfortune. But what it really is just a representation or as Thomson puts it “a cultural interpretation of physical configuration”.
This is where introducing the concept of “normal” is required to see how disability is just about whether one conforms to a hypothetical set of guidelines or not. Normal that comes from the language of statistics involving terms such as mean or average when began to be applied to human development is when the complexity arose. Because when you say somebody is “normal”, you automatically exclude the minority, the aberrant, and the rare. Our history is dense with tendencies in humans to conform to certain socially accepted upon norms or to breed the “perfect” subsequently resulting into constant attempts of trying to weed out any kind of perceived disability whether in ancient Greece or the Holocaust or in everyday reality. Disability is not just about the body then, it is about the social factors that define and mediate it, it is about the cultural milieu that confers meaning upon the impairments, social norms that exclude all that is not “normal”. Where disability is talked about as an “impairment that substantially limits one or more of the major activities” one needs to question the terms that are essential but implicit to the definition like “impairment” and “limit” in this case. Who decides these limits? On what basis? Disability, if thought in this fundamental manner is then not so much a corporeal property of bodies but a product of cultural guidelines about what bodies should do or not do. This view is clearly a socially contextualized one where one can observe certain “standards” that are culturally generated and disseminated which creates an effect of disqualification. Thus, the ways that bodies/minds conform to social expectations determine the degrees of disability. So this code of “normalcy” then excludes and disables those who do not conform while validating and affirming others. Then by focusing on the disabled person’s representation in culture we are also enabled to also focus on the normative self that is so strongly imprinted in our mind. By probing the peripheral, one might say, we are able to view the whole in a renewed way. A disabled figure who represents the paradigm of what culture calls “deviant”, can help uncover the very assumptions that sustain seemingly “neutral norms”. By probing the “abnormal”, we can probe what the “normal” or “ordinary” is. And if the ordinary is based on such shaky exclusionary assumptions then is anybody really normal or able? As Goffman points out that the most fortunate of normal are likely to have failings and for every little failing there is a social occasion when it looms largely creating “a shameful gape between the virtual and actual social identity”. The difference being that the visibly stigmatized suffer in every social encounter the constant indignity of wearing their situation on their sleeve. The multiplicity of norms in society is such that, according to Goffman, against which everyone in some situation or the other falls short which has the clear effect of “disqualifying”. He gives an example that there is only one complete unblushing male in America: a young, married, white, urban, northern, heterosexual Protestant father of college education, fully employed, of good complexion, weight and height and a recent record in sports. Anyone who fails to live up to any one or more of these standards will during some moments of course will feel inferior or unworthy. An ironical fact to notice here is that femaleness is not present in Goffman’s sketch of the normative. There is always in every aspect the defined “normal” and then what we see arising from that is deviance or conformance where the latter is always rewarded.
I hope it is clear by now that disability is not just a corporeal attribute, it is an ideological product marked by socially determined stigmas excluded from power and status. The normal then is the constructed identity whose ubiquity, value and force reverberates very clearly, which we try to emulate and attempt to conform to thus looking at any deviance as a spectacle of Otherness. I hope I have succeeded even in a small way through my pervious, rather congested, passages with clashing discourses about codes of normal and the idea of the “deviant” and its cultural implications, to encourage the reader to go further than the monologic explanation of physical difference as “deviance” from the “normal”. I desire to make the reader question the very foundations on which these words stand and urge everybody to think where the disability is really located. It is important to first conjecture about what disability really is, then examine the sites that construct it and then move on to the production of “extraordinary” and “ordinary” figures that disturb us all.
There is another very important aspect that I would like to discuss is the construct of the disabled figure in our culture that is informed more by receive notions and assumptions where the only defining principle about the person is his or hers disability which is really clear when one examines the conventions in literary representation of certain characters. When we see a disabled person, their disability is seen as an absolute organising principle of their life thus stripping them of their multi-dimensional life that is not centred on their disability. Disabled literary characters are generally uncomplicated figures or exotic creatures whose physical traits are brought into use as mere spectacles to elicit responses from other characters or to further the plot or to produce a rhetorical effect. This reduces the disability into a trope to be used by the plot which not only decontextualizes the identity of the person but makes it seem as if the disability is the only defining trait of the person. There is a huge gap between an attributed concept of the identity of the disabled person in the narrative and the experience of real people living with impairments which very clearly suggests that certain interpretations and conferring of meaning to bodies have given rise to such exaggerated version of characters. Also, if we accept the convention that art imitates life and vice versa, if we agree that literature has some mimetic relation to real life, we grant the literature power to mould and solidify our perceptions regarding such complex situations. To prevent from people’s tacit acceptation of the misrepresentation of flattening of the experiential reality of people the gap has to be made to see between disabled people and their representations in our culture. Thomson rightly suggest, that from folk lore to myths to today’s postmodernist concept of “grotesques”, the disabled body is always a freakish spectacle presented as a narrow profile by the mediating narrative voice. She proceeds to give eye opening examples which I would like to simply quote here, like “Dickens’s pathetic and romanticized Tiny Tim of A Christmas Carol, J. M. Barrie’s villainous Captain Hook from Peter Pan, Victor Hugo’s Gothic Quasimodo in The Hunchback of Notre Dame, D. H. Lawrence’s impotent Clifford Chatterley in Lady Chatterley’s Lover, and Tennessee Williams’s long-suffering Laura Wingfield from The Glass Menagerie.” So in all these texts one might notice that all the disabled characters are just defined by their “otherness” where their disability is highlighted as a an obvious difference creating a reality that falls very horribly short of intricacy of real life that is not just about one exaggerated difference around which one’s existence revolves. Very obviously, literary texts disable the character from having a contextual identity engulfing him or her by a single stigmatic trait. The stereotypes and caricatures which arise from the gap between representation and life are in turn more hardened when communally shared and indoctrinated. The narrow minded focus on the body is not just an evidence of cultural assumptions but also serves to further make such disabilities permanently etched as caricatures in our mind. These caricatures enables us to see such people only for their stigmatized trait and “tsk” with pity inwardly as if that impairment was the only thing about them.
The last thing that I would like to talk about is the issues of plural identity markers where we see the discourse of disability intermingling with discourses of caste, gender, race and other such cultural identities which through our discussion about the RPD bill we saw was a factor to be considered when discussing about access to schemes and resources for the disabled. Here I would like to talk about how these plural identity markers further marginalize one, creating a paradoxical hierarchy within a hierarchy. My point can be put across perfectly through the discussion about what a disabled women in India goes through about which my views were born out of readings of Anita Ghai’s work. Here the cultural constructs become more heavy, more oppressing and hard to miss. As she negotiates the socio-cultural and political positioning of a disabled women in a traditional patriarch society through her own experiences we see how terribly one’s impairment can be exacerbated to a point where it “becomes” a severe “disability”. The journey of recognition of cultural forces in an everyday reality of a disabled person that makes their life so perplexing and difficult to engage with is enlightening. Disabled people as we discussed before have to constantly content with negative cultural constructions marked by stigmatisation. Within the Indian context, it implies a “flaw”, which is associated with the image of helplessness. Or worse certain cultural constructs images the disabled people as associated with deceit and devilry. Sometimes they are depicted as ones suffering the wrath of the God being punished for misdeed that they must have committed in their past life. This image can be related to how this then gives rise to the whole “charitable’ approach as a response to the predicament where the gestures are not out of a sense of commitment but as a response to the traditional belief to do one’s holy duty towards the helpless. This welfare approach is also reflected in governmental approach which very recently looked at disability as a realm of charity towards which contribution was made by strengthening non-governmental organisations and funding. Even though this is a tangential point, but it clearly shows the negative effects of cultural connotations that disability has come to be associated with, which has resulted into a welfare approach by government and society. Coming back to disabled women, disability in women is viewed as an “additional stigma” beyond the obvious stigma of being a women where she becomes a “double burden”. The possibility of a gender dimension to disability has only recently been realized. Das and Agnihotri (1999) indicate that the occurrence of disability is intersected (or influenced) by gender. In Hindi there is a common phrase, “Ek to ladki, upar se apahij “translates as ‘First a girl, and then disabled.’ Which implies that the incidence of being a girl itself is a congenital liability which has been worsened by her being disabled. Indeed chances to improve the quality of life of a disabled girl especially from an indigent background in India, are virtually nonexistent. They are already living a life of subordination without education or employment, they could do without the stigma of being disabled. In a culture where being a daughter is considered a curse or a burden, being a disabled daughter is a fate worse than death as Ghai rightly points out. She not only has struggle with the thwarted desires for a son but also her disability which makes her even more of a burden whose weight she can’t seem to alleviate, reject or deny. The desire for son is rooted in the context of a cultural view which makes the girl a futile social and economic burden which eventually has to be given away while a son stays back as the supporter of the family. The construction of “daughter as burden” is rooted in the culture which looks at daughters as parai (outsider), that is, one who will go to another home. The idea of her going to another home comes from the religious ritual of Indian marriages where one of the duties of the father (note that the duty is of the patriarchal head to “give away” the daughter, not the mother) is kanyadan, as Johri says, “the unreciprocated gifting of a virgin to the husband and his family.” And this is where giving dowry also becomes a ritual. The implicit understanding in this practice is that whatever you “gift” must be perfect. Thus, a disabled bride must be compensated for. If the recompense is not probable, then compromises, such as marriage to a widower, have to be made. But the boy, if disabled, always demands an able bodied woman, because god forbid he has to “come down” to the status of a disabled woman. Also, disability in a son though distressing, is more tolerable, as he does not have to be given away or made compensation for or to be carried as a “burden”. Manusmriti comprises of 2,685 verses about depictions of life in the world-how it is and how it should be. Manusmriti is a fundamental text of the dominant form of Hinduism. According to interpretations by Wendy Doniger and Brian K. Smith, in the text, Law 72 states: ‘Even if a man has accepted a girl in accordance with the rules, he may reject her if she is despised, ill or corrupted, or if she was given with something concealed.’ This is then followed by Law 73: ‘If anyone gives away a daughter with a flaw and does not mention it, that gift from the evil hearted daughter-giver may be annulled’. The disabled sons retain the likelihood of marriage, as they are not gifts but the receivers of gifts. Gifts being women here. Moving one from marriages issues, the double feature is not only restricted to such issues. There is the issue of the gaze, where male gaze makes women feel like passive objects and staring at a disabled person turns him or her into a grotesque sight. Disabled women not only contend with how men look at women but with also a society which strips them of their contextualized identity. Their being doubly pinned by the male gaze and gaze of the culture is a fact ignored by both Indian feminism and Indian disability movement. In a nation where any nonconformity from a normally acknowledged prototype is pointed out as a discernable deviation, the compromised body becomes a representation of defectiveness. The myth of the beautiful body defines the impaired female body as unfeminine and undesirable. Disability is hence established as being profoundly ‘Other’ in our civilization. The roots of such thinking can be found in Indian mythology as shown by an excellent example by Anita Ghai. Lakshmana, brother of Rama, cuts off the nose of Shurpanakha who shows interest in him. The fact that Lakshmana can only respond to what he considers unacceptable comportment by disabling the ‘ugly female’ shows how disability and de-sexing are associated in the Indian psyche. This kind of reasoning is echoed in the contemporary culture of Punjab in North India where although girls are permitted to intermingle with male cousins but they are not allowed to sleep in the same room with them. Disabled girls however are put under no such restrictions. This is what Hahn calls “asexual objectification” where sexuality is not considered to be associated with “ugly” disabled girl. It not only denies them basic human attributes creating further the “Other” but also exposes them to the dangers of sexual violation and abuse regarding which there have been many horrific cases. The supposition that sexuality and disability are mutually exclusive repudiates that people with “different” bodies experience sexual desires thus denying them anything that comes under the ambit of being a “normal” female.
There are many more issues that I would have liked to talk about, like issues of “sameness” and “difference, ghettoization, attempts to quantify disability and so on. But this is, I hope, enough to fulfill my mission. After personally coming to engage with the concept of “disability” I wished to discuss it, because if I do not discuss it, I am participating in marginalizing it further. Everybody knows about 377, nobody knows about the RPD bill, it is an astonishing and tragic fact. The knowledge about the bill is important, to contribute to it our voices is important but not before knowing the discourse of disability which is huge, complex and opens up an entire world that most of us have not even thought about to venture in. We have been systematized into thinking a certain way, about certain things. This articles wants to shatter that systematization by introducing and posing certain conceptual questions that urges you to think and then engage with the issue in your own way with the motive of bringing the issue in the forefront.