Finally, the government has turned its focus on enumerating the disabled in the country. With eight categories on multiple disability, the 2011 Census is being more inclusive of the diversity of disability.
An edited version of the article appeared in the Indian Express on January 16, 2011.
Chinki Sinha
New Delhi, January 15, 2011
Sitting in one of the rows, Kshama Kakade Kaushik, a disabled rights activist from Ajmer, made a mental note of meeting the Sarva Shiksha Abhiyan's block resource teacher in order to sensitize her about the enumeration of the disabled in the 2011 Census questionnaire. Through the resource teacher, she would be able to tap the caregivers who have access to the remote rural areas and they can spread the awareness about “number 9” question on disability.
Kshama was among the disabled rights activists from across the country who had traveled to the national capital to discuss ways to raise awareness about the 2011 census' disability question, which has been moved to number 9 in the order from the 15 th spot it previously occupied in the 2001 census.
Besides, the commission has revised the number o categories from five to eight, enumerating mental illness and mental retardation separately and incorporating a category called multiple disability where one can enumerate upto three disabilities.
But what the activists are touting as a major development is the inclusion of a category called “Any other” where autism, dyslexia, Alzheimer's and any other disease that doesn't fit into the other categories can be listed.
In the 2001 census, where a question on disability was included for the first time after the National Centre for Promotion of Employment for Disabled People (NCPEDP) and the Disabled Rights Group led by Javed Abidi lobbied hard for the inclusion of what they called the missing millions, the disabled people.
“The numbers of 2001 census on disability are all wrong. The truth is hiding somewhere between the percentages of 2.1 percentage and 10 percentage. We need to find it,” Abidi said.
In the last census, the five categories included seeing, hearing, speech, movement and mental disabilities. These left out disabilities like cerebral palsy, autism, etc.
But because of a lack of sensitization exercises for the enumerators and the people with disabilities and their families, a large number of disabled were not enumerated. According to the 2001 census, the percentage of the disabled in the country was pegged at 2.1 percent as against the United Nations estimates of 10 percent of the population in any developing country is composed of disabled.
Abidi said in the current census exercise which will begin from February 9, NGOs like AADI and Vishwas have been involved in training the enumerators on the disability question. An hour-long slot was dedicated to disability in the training of Census officials.
The NCPEDP has designed the Instruction Manual for Census 2011 Enumerators with the guidelines for the enumerators who would be the people on the ground conducting the surveys.
The training module urges the enumerators to ask the question.
“As an Enumerator you can make the difference! It is you who would be going to every house in the country. You will be the witness to the fact that people are there, they exist. You will report this data to the Government. It is this data that will be used for next 10 years for policy making, for resource allocation and for making facilities. It is therefore, in your hands to make the ‘invisible population’ ‘visible’!”
It goes on to list the disabilities and what to include and what doesn't qualify as a disability like a person with vision in one eye or a person who is color blind are not to be enumerated as disabled. Similarly, a person with hearing in one ear is not to be listed as a disabled.
But it makes it clear that short-statured persons or dwarfs are disabled in the category of “movement” and differentiates between mental retardation which it clarifies as a disability a person is born with and mental illness, which a person can acquire later.
It also asked the enumerators to not indulge in any discussions or counseling and to refrain from expressing disapproval in case a person talks about their disability. They are also instructed to keep the information confidential and convey it to the families so they don't shy away from listing their disabilities because of the social stigma.
With just three more weeks before the exercise begins, the NGOs and activists who met in Delhi at an event organized by AADI (Action for Ability Development and Inclusion) and NCPEDP brainstormed about what they can do to help raise awareness among the people.
Kakade, who works with the Mahila Kalyan Mandal, was among them.
“Information is key. We need to get the word out there. I came to get a perspective from the national capital,” she said. “In Rajasthan, transport is a an issue and traveling to remote rural areas is difficult so I am going to tap the SSA and the Local Level Committees in these areas,” she said.
Operating with a limitation of funds and resources, it would require reaching out to other NGOs in other sectors in states like UP and Bihar where there aren't many disability NGOs in order to spread the word, G Syamala, Executive Director of AADI, said.
“We have to see our strength is. We don't have much time,” Syamala said.
She said the solutions would depend on the cultural and regional context, too. For instance, in Rajasthan, Kathputli shows can be organized to raise awareness about the disability question. Besides, contacting local government officials, SSA teachers, youth organizations and role models could be useful in addition to organizing press conferences at the district level to involve the local media, which has a wider reach in the rural belt than the national dailies.
Several activists suggested ways to take the awareness campaign forward in order to get a significant proportion of the disabled enumerated so at the policy level, the numbers could be used to draft welfare schemes for the disabled as the politicians would be able to see what percentage of their vote bank consists of disabled and then work for them, according to Abidi.
Renu Anuj of AADI said solutions could be as simple as getting a chair and a table and sitting in crowded markets or railway stations in order to tap more people and making them aware or using the NREGA program officers to spread the word.
“Everyone knows their folk songs. We can use the Ramlila organizations. We just need to say disability is no curse and so come out and get enumerated,” she said.
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