Guest Editorial: ‘Dis/Abilist Ideologies: Politicizing the Personal in India’

I was always aware of difference, of being different, of being treated differently, despite all attempts to be like my other friends. I was aware that the difference was sometimes affectionately mocked, like when my primary school friends called me Thumbelina. Sometimes the focus of attention of some relatives, who felt they had to be extra kind to me, sometimes the subtle yet consistent negation by other relatives, who did not expect much of me, and mostly the stares of people around us after a certain age when I was made to feel that there was something lacking, all these and many other encounters underscored subtly and blatantly that I was less than others around me. Even without a disability activist’s orientation, I was able to sense the devaluation, the doubt about my abilities and capabilities, the disbelief at each of my successes, and the knowing acceptance of my failures, to the extent that I too did what many other disabled people do – withdraw from social life, as being the cynosure of all eyes and the talk of all tongues is quite tiring. The will to fight evaporates slowly with each and every stigmatizing encounter.

As Goffman (1963) has pointed out, individuals with bodily characteristics different from the norms of the dominant social group are considered deviants, devalued and subjected to processes of exclusion. Notions of difference and deviance rely heavily on ideologies of the normate – what Garland Thomson (2002) defines as the corporeal incarnation of culture’s collective, unmarked, normative characteristics. These abilist ideologies create notions of a perfect or idealized body, functioning, behavior, comportment, and bearing. Bodies and minds that do not conform to these normalizing ideologies are hence preferred to be removed from social visibility, and tucked away into oblivion, as if acknowledging them harms the social conscience.

The word ‘disability’ signifies different meanings for different people – people divided by notions of difference, dependency, and discrimination. For years, disabled people have themselves been challenging such ideologies and indulging in such practices of the body and mind that enable them to overcome the aspersions of incompetence, deficiency, and helplessness. Despite such efforts, they are marked into either of these two categories – the Super Crip, who is able to overcome physical and mental inadequacies and emerge in a superhero role or the incapacitated, who is completely dependent and incapable of making choices or taking decisions, let alone assuming the role of a responsible adult.

Within such discourses remain hidden the personal – the personal everyday struggles, joys and sorrows, hopes and despair of disabled people on different fronts. Within the unfriendly physical environment, which is a reflection of the social structural barriers, disabled people build their lives and worlds much as their non-disabled counterparts do. Their lives, girded by families and the socio-cultural ideologies, acquire meaning through their personal interactions – with and through their bodies with the surrounding physical, social, and cultural milieu. Yet their daily struggles and strivings are invisibilised and rendered inconsequential. They are, in no uncertain terms, exempted from adult citizenship .

C. Wright Mills (1959) underscored the need to connect individual experiences to social relationships. Only by continually translating personal troubles into public issues, and public issues into the terms of their human meaning for a variety of individuals, can we identify and reveal the underlying power relationships that constitute them. The personal becomes political for disabled people through identifying common personal experiences of discrimination and oppression, even though the actual nature of such experiences might vary depending not only on types and degrees of disability but also on physical environment and social locations. Such shared oppression is exposed only when deeply felt personal experiences are made public, held up for scrutiny and underlying power relationships and structures are elaborated.

For most disabled people, the power of the gaze to impose both grotesqueness and invisibility is the first sign of oppression. From private personal arenas to public domains, disabled people become on one hand the cynosure of all eyes as the transgressor in public spaces, and yet their presence is ignored or denied on the other hand. The most common experience is while people stare at and comment loudly about the disabled person, no one ever speaks to them directly. The assumption seems to be that because they have a disability, they are devoid of feelings, ideas and thoughts and hence others have the power to decide for them. Notions of power are engaged in almost all relationships that disabled people find themselves enmeshed in or excluded from – from caring and dependence within families to expressing themselves and their sexuality, from assuming responsibility for self and others to asserting themselves in all spheres of their everyday lives. At every stage of life, disabled people find themselves to be either acquiescing to or resisting such power relationships that converge in their lives.

The individuals within a marginalised group in society internalise the prejudices held by the dominant group – the acceptance and incorporation of ‘their values about our lives’ (Morris 1991). We harbour inside ourselves the pain and the memories, the fears and the confusions, the negative self-images and the low expectations, turning them into weapons with which to re-injure ourselves, every day of our lives. This form of oppression is most effective when it is acting at the subconscious level, affecting the self-esteem of the individual in addition to shaping their thoughts and actions (Marks 1999). This internalised oppression comes to the fore in the form of the refusal of disabled people to actively reflect about their own lives – it is easier to accept the prototyping and remain in splendid misery than to question and challenge them. This was most noticeable when, despite the call for entries for this issue being sent out repeatedly, through different forums and on a personal note, there were hardly any responses. What is strange is that even activists, who cry out that the voice of the disabled is suppressed, find it easy to talk of oppression as out there and not as internal to themselves . Hence, in India, we still talk in terms of the objective concrete indicators like education and employment for disabled people, instead of subjective experiences of everyday pain, struggles, negotiation, and hope. After all if you are disabled, you have to grin and bear it.

On the other hand, there are disabled people who constantly challenge abilist ideologies in different ways – either by adhering to social ideologies, which are not seen as applicable to them, thus challenging the negative associations or by conforming to cultural stereotypes leading to further unconventional modes of being. Both are subversive ways of contravening the accepted social ideologies – thus the severely disabled woman who is happily married, the single disabled adoptive mother, the severely disabled man who drives to work, the disabled son who performs caring responsibilities for his parents, the disabled adults who look for sexual gratification and pursuit of leisure in public – all are, in different ways, engaging in politics.

This issue highlights the everyday experiences of disabled people in the domains that are not talked of commonly – not the areas where the Super Crip emerges or the images of ineffectual impaired people reign. This issue is about disabled people in their everyday lives within families and communities, facing abilist ideologies, dealing with them, and emerging as survivors in the everyday struggles of life. The articles are reflections by and of common people with disabilities and their families, looking at aspects of life that no one deems worthwhile for the disabled people – relationships, sexuality, and independence. This issue celebrates the bringing to the political arena issues of personal importance that impinge on our lives, the lives of a group of people who remain marginalised in India and globally.

The personal narratives reflect a range of differential experiences – relationships of power and dependency that most disabled people face in their daily lives, which some readily accept, others subvert, and yet others challenge. From fear of living alone to living and managing independently, from negotiating inaccessible transport systems to travelling alone, from having communication problems to training others in communication, from being questioned as a sexual being to openly challenging such notions, from being cared for to becoming a mother – all reflect personal journeys in politics or changing the relationships of power. The perspectives reveal the ideologies that dominate the lives of disabled people, cultural values, and ideas that are held generally and, also, by disabled people themselves that impinge on their lives.

For me, this journey has been a physically and mentally demanding one – from the angst of not finding contributors in the initial days, to reliving lives of unknown people through their stories, connecting it to my own experiences of oppression and powerlessness, and to realizing at the final stage the common thread of hope and optimism that runs through all the stories. The challenge is cast; politics is hopefully engendered through the commonality of experiences that problematizes abilist ideologies and argues for respect for difference.

I leave with another personal note: nearly three months ago, I won the custody of my adoptive daughter after a long wait of more than two years. While no one in the adoption facilitating agency ever mentioned a word against my eligibility, I was made to cool my heels for almost a year before they even gave me the adoption application form. Even now, I am advised how to be a ‘good’ mother, not only by the agency but also by many relatives and ‘friends’ who are skeptical about my decision as a perceived-to-be-disabled single woman. I realize that disabled women are considered to be ‘unnatural’ mothers, always needing support. Don’t most other women, who also become mothers, need the same? Why cannot disabled women also experience the joys of a child? This is where the personal moves to the political arena as one analyses power relationships in our lives and decides what to do about them.

Even as I am penning the editorial, I have received news of a deaf disabled tribal girl, undergoing a vocational training course, has been brutally raped in Odisha by her instructor. For her, now, the personal has become the political, where an unresponsive state system becomes the oppressor, by legitimizing the very abilist ideologies we have chosen to problematize in this issue.

Read on!

Guest-Editor,

Dr. Nandini Ghosh

Assistant Professor of Sociology

Institute of Development Studies Kolkata