Whither definitions? Celebrating Diversity………….

Blog by:
Dr.Nandini Ghosh
Assistant Professor of Sociology
Institute of Development Studies, Kolkata

Having consented to writing a blog, I was faced with the dilemma of where to begin…….with a lot of thought I decided to take the devil by its horns – how to define disability?

There has been enough debate on defining disability with the western academics and activists conceptualizing the models of disability, ranging from individual, religious, welfare, medical, social and human rights models. Each model highlights how disability has been or should be viewed from a particular perspective, with the first 4 models being more negative about persons with disabilities and denying their capacities and personhood and the last two, more empowering in terms of ways in which disabled people are viewed. More lately, the UNCRPD has offered a more inclusive definition of person with disability, thereby putting the onus on governments to minimize the impact of impairment.

The social model was very liberating for most disabled people who had access to its meaning – barriers created by social organization that failed to take into consideration difference. While in disability parlance, disability has been used to refer to socio-cultural interpretations of physical, cognitive, intellectual and psycho-social difference, it can be further extended to any kind of difference that exists in any society. Herein I refer to the diversity so highlighted in the UNCRPD, because in the Indian context, diversity exists not only in physical, cognitive or intellectual capacity, but also in terms of linguistic, religious, ethnic, regional, communitarian etc. identities. If we have, despite political manipulations, coexisted with these dimensions of diversity for centuries, why does disability as a form of diversity not find a place in society?

This brings us to the question of how included are disabled people in Indian society? In the individualistic west, the way in which barriers were interpreted and confronted, are the same barriers relevant in India also? In a cultural context, where independence is not so much a value as interdependence, what is the location of disabled people? Are they as isolated and neglected as in the west? Frankly no – mainly because of the fact that, however controversial, family still remains the foundation stone of society in India and families do take care of their feeble, elderly, disabled members, to the extent possible. But the sense of care and protection within families, even to the extent of over protection and thus creating more dependence, often is as detrimental as neglect and mistreatment. In rural communities in India, most disabled persons are as included as any other group of people, especially in childhood and adolescence, when they are taken to cultural and religious festivals, play with their peers and participate in household tasks. As they grow older, however, this participation diminishes – probably due to the hassle of taking the person to such gatherings and because of the shame experienced by the person himself/herself, as they increasingly aware of the gaze. The gaze is also there because of curiosity, pity and kindness, because most people have not seen or experienced such people in public spaces. They recognize the difference, diversity if you will, but confer on it aspersions of devaluation, just because they do not understand the same. Until and unless more and more disabled people are out there on the streets, public spaces and utilities, and making use of the same, this attitude will not change. This has to be on an everyday basis and not as and when convenient.

The other major issue is of the ways in which governments define disability. The present definitions are drawn from the PWD act 1995, which had medicalised disability and handed over responsibility for certification to the medical professionals and their exclusive knowledge. Although it is an understandable strategy from the point of view of the state in view of the masses of Indian population, this perspective completely denies both differences within individual impairments and the impact of social, economic, political and regional contexts. The assignment of percentage of inability further complicates the matter – after all, people who are completely blind, completely deaf and completely immobilized all have the same percentage of disability, but their needs are specifically different. Their restrictions and limitation in community are experienced differentially and this difference has never been accounted for. Putting them in to categories of boxes allows the state to then provide sops to these people and ignore them for most of the time.

The UNCRPD has encouraged us to look at the diversity in society, as well as within the disability sector itself. What is offers is more philosophical, which however needs to be translated into culturally specific ways of looking at and defining disability, at least in India, without creating a hierarchy of impairments and arguing for the most disadvantaged. Maybe instead of centralized certification, what is required in centralized guidelines but interpreted by local authorities in identifying and certifying disability based on more inclusive criteria, which takes into account functional restriction based on impairment as well as the social, economic, political and regional contextual barriers, which influence the experience of both impairment and disability in particular contexts. The team should thus be multi-disciplinary, blending professionals with non-professionals and disabled people themselves, who bring in their socio-cultural perspectives in designating disadvantage and thus discrimination. The modalities of such a process should be discussed openly with disabled people to make it as transparent and effective as possible.