Area of darkness: Serious research on disability in India remains a pipe dream

Disability Rights Perspective, a first-of-its-kind social development report, was tabled in New Delhi recently with a view to highlighting the unavailability of adequate data and research studies on disability in India. Srija Naskar speaks to activists ab

ing that there are not enough students with disabilities who have gained entry into universities and that there are not enough teachers in the universities who are teaching disability but we have not even now reached a point where we can even begin to say that having people with disabilities will alter the quality of education itself because it will bring new perspectives to people who are not disabled, that there is a quality that persons with disabilities will render into universities that will enrich the fabric of higher education. It is something that we have not begun to appreciate.”

The report’s objective is to focus on disabilities in labour, education, status of girls and women with intellectual disabilities in rural and urban areas, in situations of custody and psychiatric care. “What we are hoping to do is to persuade more people to dismantle the boundary between mainstream social scientists and people working from disability rights perspectives to try and enrich our social and academic fabric,” added Kannabiran.

Asha Hans, a feminist who has been part of the women and child disability movement alongside the likes of Anita Ghai and Malini Chib, brought to the audience’s attention that while a lot of qualitative work has been done in this area of study, there is a huge lack of gender-related data. Hans recalled the time when she was doing shadow reporting; she had asked Malini Chib about the worst kind of suffering that women with disabilities were being subjected to in present times, to which the latter had said that the most pressing need for them was the unavailability of toilets. Hans immediately did a survey on this, the findings of which can be found in the report.. She also went on to do a survey of the Asha Kiran institutes in Delhi where to huge dismay and shock it was found that children and women in disability were kept under inhuman conditions in these institutes. About 180 women out of a total of 243 residents of these institutes had been abandoned. Another important area of research by Hans has been the issue of reasonable accommodation, which she pointed out as an important part of the convention of Rights of Persons with Disabilities. “If we are to follow what the Universal Declaration on Human Rights talks about, human beings are born free and equal in justice and dignity and that is what our report has tried to bring about,” said Hans.

Muchkund Dubey, who had chaired the event, took the dais to highlight the significance of the report which was releasing right after the announcement to bring changes to the Disability Bill was announced by the Parliament on International Disabilities Day on December 3. “Significant amendments have been made to the Disability Bill with regard to education, the rights of which are also recognized in the RTE Act. But surprisingly, the bill proposes free education for the disabled but not a ‘compulsory’ one. So far as disability in education is concerned, the more relevant data is not enrolment but attendance. Most of the disabled are in the ‘out-of-school’ data,” said Dubey.

That disability is not a liability and that it is the legal right of the disabled to be helped out was reiterated during the occasion. Ashwini Deshpande who teaches Economics of Discrimination at Delhi School of Economics has also contributed a chapter titled ‘Disability and Data’ in the book and was present at the occasion to talk about the findings from her research. “The literature on disability is very sparse and when we talk about inclusive development, disability inclusive development is not really mainstream, both in terms of policy and in terms of scholarly research. There are all kinds of hurdles; attitudinal, social, so forth that prevent the full integration of people into social and economic life but in order to solve this at the policy level, if u say, ‘I want to do mainstream inclusion’, ‘ how do u know who to mainstream?’, ‘how do you know how many to mainstream?’ and ‘what are the contours of this large issue?’ That is why the data is very important,” said Deshpande.

“What started as a medical condition in understanding disability later on moved to social integration and now an integrated model, the ICF model ( the standard modeldefinition followed today in understanding disability) combines the bodily and the social one. The NSS conducts a special disability survey every 11 years, but NSS surveyors are told that if a person is restricted or lacks the ability to do a particular function considered ‘normal’ for a human being– the onus of defining and counting a person as disabled lies on the NSS enumerator which I think is unfair for thousands of enumerators who are very hard working and do their task with a lot of diligence. Census of India, for instance, offers micro data state-wise, even town-wise, rural/urban-wise but they have no screen for assessing disability. Census enumerators have to

“What started as a medical condition in understanding disability later on moved to social integration and now an integrated model, the ICF model (the standard model-definition followed today in understanding disability) combines the bodily and the social one.”

decide whether a person is disabled or not. There’s a new data set which is increasingly being used, it is called India Human Development Survey that focuses on activity limitations, participation in the broader social or economic life and there is a gradation, so this one’s focus is different from NSS and Census data because it really focuses on activity imitations. What the Census focuses on is essentially impairment, what the IHDS focuses on are the functional and activity limitations. I have highlighted most of these aspects in my chapter,” said Deshpande.

Another very interesting point brought to the fore by Deshpande was the debate on reporting versus incidence which is incumbent to understanding how we look at disability rights and the cases of violations that take place everyday. “With the kind of data that we have, economists are always asking this question, is it a reporting story or is it an incidence story? Are people not reporting enough or is it that the incidence is low? For example, if u look at official Census data, it states that 2.2 % of the population is disabled which the disability sector recognises as an underestimate because their estimate ranges between 4-5% and the World Bank estimates range between 4-8%. So, already there is an estimate between 2-8% and maybe it is even more than that. We don’t yet know but all of this would signal back to the question that I had in the first place begun my discussion with, ‘what is disability?’”

Disability Rights Perspectives report gives no easy answers because it is not a policy document. But it gives recommendations based on current findings and what it does, most important, is open up the scope for more venture into future research on a subject, hitherto lurking in the margins.