Census 2011 and Disability Making an ‘Invisible Minority’ visible

Numbers are an interesting thing. More often than not, we do not even realise their significance or their impact on our lives. When policy makers of the country sit down to allocate resources for issues, they go strictly by the book. If there is no authentic data on the percentage of population living with disability, resource allocation will not be proportional. For nearly 50 years after Independence, there was no authentic data on the percentage of population with disability. And therefore, disability was nowhere in the Nation’s radar screen.
The term ‘Invisible Minority’ has become synonymous (and even fashionable!) with disability. This was coined in the early 90s, when the Disabled Rights Group (DRG), non-political advocacy collaboration, was lobbying for the Disability Act of 1995 and suddenly realised that there was no authentic data on disability in the country and those that were, said that less than 1% of the population had a disability. People with disabilities simply did not exist!
The history of Census in India dates back to 1872. However, no Census of Independent India thought of enumerating people with disabilities (except in 1981 as it was the International Year of Disabled Persons). It was only in 2001, after months of struggle led by National Centre for Promotion of Employment for Disabled People (NCPEDP) and DRG, a question on disability was included at the last moment. The question, itself was rushed, and had only five categories – Seeing, Hearing, Speech, Movement and Mental Disabilities. A huge chunk of the disabled population with disabilities like cerebral palsy, autism, etc. had no choices where they could be enumerated. Then again, mental retardation and mental illness were not differentiated.
However, the biggest problem was the lack of sensitisation of the enumerators because of which the question itself wasn’t asked or; due to lack of awareness among people with disabilities and their families, they did not come out to get themselves enumerated. The result was 2.1%.
An often quoted study by the United Nations says that 10% of the population of any developing country has a disability. The Census figures of Australia says 20% of its population has disability, U.S.A. 19.3%, UK 18%, Sri Lanka 7%, Vietnam 6.4%, China 6.3%, Bangladesh 5.6% and Pakistan 2.5%. Even if we consider the statistics of just the developing nations, it can be assumed that 2.1% is a huge underestimation. Conservative estimates puts the population of people with disabilities at 6 -7%, i.e., 60 to 70 million people.
The next Census is due in February 2011. This time around, planning at NCPEDP happened months in advance. Fortunately, the Registrar General and Census Commissioner of India, Dr. C. Chandramouli, is highly sensitive to disability issues. There have been two major developments till now.
First, the question on disability has been revised. The question in 2001 had only 5 categories. This time around this has increased to 8. For the first time, an attempt is being made to enumerate Mental Retardation and Mental Illness separately. There is also a category called ‘Multiple Disability’ where up to 3 disabilities can be enumerated. However, the most important achievement has been the category called ‘Any Other’, where anyone who considers herself/himself to be disabled or whose disability does not fit into the other categories can be enumerated.
Second, the question has been moved upto number 9 in the questionnaire. In 2001, it was at number 15.
The challenge now is to sensitise the enumerators so that they ask the question. For this, a one hour slot has been given to disability in the training of Census officials which will then trickle down to the Enumerators.
The bigger challenge, however, is to spread awareness among people with disabilities and their families so that they answer the question. There is, after all, still a lot of stigma attached to disability, especially in the rural areas.
(The author "Ms Dorodi Sharma" is a Programme Manager with the National Centre for Promotion of Employment for Disabled People, New Delhi and has been working on the disability aspect of Census 2011 led by the organisation. She can be contacted at dorodi_sharma@ncpedp.org.)