Critical links between data & disability advocacy explored in third Know Your Rights Webinar Series

Across India, there is a growing demand for data collection and disaggregation by disability. How does this get transferred to people with disabilities and the groups that speak for them to enable a shift towards evidence-based advocacy and policymaking formed the theme for the third session in the Know Your Rights Webinar Series.

The crucial role played by data in decision-making and ensuring equal opportunities for disabled people came under the spotlight in the third discussion in the Know Your Rights Webinar Series.

Held over eight weeks, the webinars aim to engage youth leaders, students and experts across India and create greater awareness about disability rights. The event is being organised by the Javed Abidi Foundation (JAF), Disability Rights India Foundation (DRIF) and Commonwealth Human Rights Initiative (CHRI), with NewzHook as the media partner.

India’s data blackhole on disability

When it comes to data, India’s record has been rather poor as budding lawyer Harsh pointed out. He kicked off the session by questioning the mismatch between the Census 2011 figure which puts India’s disabled population at a measly 2.21% when the world’s disabled population is 15% according to the World Health Organisation (WHO).

Acknowledging the problem, social entrepreneur Ankit Jindal explained that in 2011 enumerators were not trained adequately. The other issue was that many disabled people and their families chose not to talk about their disability.

Ankit also spoke about traditional and contemporary approaches towards data collection. While the former is based on the medical model of disability, the latter was social, focussing on the issues and collecting information about barriers faced by a disabled person rather than the nature of impairment.

There are many key stakeholders who require data on disability, firstly people with disabilities themselves followed by policymakers, academicians, activists, students, NGOs, disabled people’s organisations, business enterprises and service providers as well. Each of these stakeholders need the data to take stock, plan policies, do advocacy and make contingency/emergency action plans. – Ankit Jindal, Social entrepreneur

Why data on disability matters

The gaps in data are substantial. Take MNREGA. The scheme has 3% reservation for people with disabilities. In practice, however, just only 0.59% avail of the scheme. This is because “only 28% of people with disabilities have a disability certificate”, says Ankit. “52% of disabled people are literate and average disability related costs for people with disabilities in rural areas is ₹ 2100 while in urban areas it is ₹ 3100”. Then there are the well documented issues faced in accessing public buildings and transportation.

The other speaker at the session Vaishnavi Jayakumar Co-founder, The Banyan, talked about the Washington Group Questionnaire, which is internationally used in 60 countries to capture census data on disability. India, she said, was far behind.

“I think India, as far as data and disability is concerned, is stuck at 2% and we are not able to get over this hump, it doesn’t matter which year be it 2001 or 2011 or the most recent NSSO reports thereafter. This is despite, the Kerala state government survey which covered a higher number of disabilities than the RPWD Act between the categories and sub-categories and they still only got 2.2%”.

The Washington Group Questionnaire looks at disabilities not through a fixed spectrum of the 21 disabilities defined under the RPWD Act. Rather, it classifies questions on limitations in activity and participation. “if the survey is impairment based then it gets very pigeonholed”, pointed out Vaishnavi. She also emphasised the need for gender budgeting and to push for action on credible data that exists.

The session ended with participants urged to seek information and write letters to concerned authorities.
“If we want to be heard, then we need to raise our voices. Information belongs to everyone and each citizen has the right to express themselves!”, said Shameer Rishad, Convenor, JAF.
If you would like to participate in the Know Your Rights Webinar Series, send an email to shameer@jaf.org.in. Or send a message or call +91 98110-38018 and +91 76249-55900

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