Enabling the disabled

In countries which list the types of conditions,the number is only slightly higher. But in countries which ask specific activity-related questions for instance: do you have trouble walking/ remembering?,disability statistics range from 10 per cent Poland to 19.2 per cent United States of the countrys entire population. The more specific the question,the more likely it is to yield a higher percentage of disabled people.

The Indian Census asked a question on disability for the first time in 2001 see box. Based on this question,the Census Commissioner estimated that 2.13 per cent of the population,or roughly 25 million Indians,were disabled.

But this number has been criticised for being too low. Javed Abidi,a disability activist and the head of National Centre for Promotion of Employment for Disabled People NCPEDP,says the low number is because the question in the 2011 Census merely listed the type of conditions,which world over have excluded many disabled people. He adds that the Census enumerators in 2001 were not sensitive. In fact,they did not even identify me as disabled, he

complains.

Mithu Alur,founder of Able Disable All People Together ADAPT,formerly Spastic Society of India says when she spoke to Chandramouli,he admitted that the 2001 data for the disabled was not robust,as they had very little time.

But while there is agreement on the need for a better question in the 2011 census,agreeing on the details has run into rough weather. Two drafts have emerged amongst the competing NGOs,each accusing the other of trying to hog the limelight. All are agreed that the new question on disability must be activity-based like in the US and Poland,but there is a dispute about what the exact question will be.

The first draft is led by a group that includes Abidi see box. This draft was the result of a day-long roundtable here on March 31,co-organised by Abidi,and attended by representatives from 22 states and the Census Commissioner himself,according to him.

The second draft has been formulated by ADAPT. Alur says these questions are based on a widely accepted,UN-approved standard,called the Washington Group on Disability Statistics see box. These questions are slightly different from the March 31 model. Alur says her suggestions are more explanatory

and inclusive.

Alur charges Abidi with not including her NGO in the March 31 deliberative process,and of hijacking the disability agenda. Abidi strongly denies this allegation. I sent an email to Dr Alur inviting her to the meeting. She did not come,but emailed me the sample questions that she suggested, says Abidi. Her questions were raised before the forum,and rejected. Alur denies this,saying it was a general email which did not contain any details of the meeting.

Abidi feels ADAPTs sample questions are too western and unsuitable for Indian conditions. One of the questions the ADAPT wants to ask is do you have difficulty in walking or climbing stairs. Half of Vasant Kunj will say yes to that question, says Abidi.

Both Alur and Abidi have a personal stake. Abidi is wheelchair-bound. Alurs daughter Malini was diagnosed very early with cerebral palsy. Both groups had joined hands to demand amendments to the Right to Education Act in August 2009 to make it disabled friendly.

Regardless of which version finally makes it to the Census questionnaire,disability activists say versions are improvements from the 2001 Census question as they are more descriptive,and expand the word mental in the 2001 question to involve specific forms of mental illness.

Chandramouli could not be contacted by phone. Alur says he has given disability activists till April-end to provide suggestions.