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Fight to stand up and be counted

On June 10, 2000, the government made the official announcement that a question on disability had been included in the 2001 Census. This was a landmark event in the history of the disability sector’s struggle. Rama Chari, traces the path to getting the Census authorities to include questions on disability.

We have statistics for almost anything, from rare species of animals to the number of vegetarians and non-vegetarians. India boasts of being one of the few countries that conducts a population census every ten years.

The irony is that inspite of this machinery in place, we do not have authentic statistics on the population of disabled people in our country. The official figure for the disabled population of India is 1.9% (Source: N.S.S.O. Survey 1991)! If we compare it with percentage of people with disabilities in other Asian Countries – China 5%, Pakistan 4.9%, Phillipines 4.4%, Nepal 5.0%, we can either pat our backs for literally having eradicated disability out of India or we can pinch ourselves in order to wake up and face the real truth.

1995 was an important year for the disability sector in India. It was the year when The Disability Act was passed. It was in that period that the disability sector also recognised one basic fact – that in the absence of correct statistics, people with disabilities will never get counted! It was promised to us by the then Government that appropriate data will be collected in Census 2001.

In the Ninth Five Year Plan (1997–2002), the Planning Commission also stated categorically that “to ensure planning for the welfare and development of the disabled more meaningfully, there is an impending need for the Office of the Registrar General and Census Commissioner, to revive their practice of 1981 Census to collect the data on the size of the population of persons with various types of disabilities and to make it available through the next Population Census of 2001 AD.”

So, it was assumed by all of us that Census 2001 would include disability. However, knowing fully well that something that is on the paper may not necessarily mean that it will get implemented, we wrote a letter to the Census Commission, enquiring if disability was being included in the coming Census. Their reply shocked us. They were not even considering the inclusion of disability as a category for data collection in Census 2001. It was indeed ironical that this letter came to us in December 1999, at a time when the disability sector was celebrating the last World Disability Day of the Millennium! This was a big blow to the disability movement.

We immediately wrote back to the Census Commissioner, explaining the need and importance of the issue. We also wrote a similar letter to the President, Prime Minister, Leader of the Opposition, Home Minister, etc. We mobilized our larger network. We wrote to all our contacts - NGOs, disabled people, politicians, etc. appealing to them to protest strongly against the decision of the Census Commission.

Around that time, our Executive Director, Shri Javed Abidi had an opportunity to meet Ms. San Yuenwah, Social Affair Officer, ESCAP in Bangkok and discussed the issue with her. To his surprise, he came to know that an International Workshop was being organised in New Delhi on Disability Statistics. This was being organised by the Ministry of Statistics & Programme Implementation in association with UN Statistical Institute for Asia and Pacific. Indeed quite ironical that information about such an important event in New Delhi came from someone in Bangkok.

We then enquired from the leading NGOs in Delhi and outside if they had any knowledge about this workshop. No one had a clue and that was not surprising at all. An International Workshop on Disability Statistics organised by the Government of India and the leading disability NGOs were not even aware of it. Disability issues get discussed and policies on disability get framed in our country without involving disabled people or NGOs who have more experience and knowledge on the issue. But then, Government or politicians cannot alone be blamed for this.

Ms. Vandana Bedi, Executive Director, Spastics Society of Northern India contacted Shri Arun Shourie and managed a few invitations. The Workshop was held from February 7-11, 2000.

The Workshop was very educative. Various methods of data collection were discussed, their strengths and weakness were elaborated and what emerged was very clear. Our conviction that disability must get included in the forthcoming Census became even stronger.

The fundamental strength and value of the Census comes from its universal coverage and its freedom from sampling error. Another advantage of the Census is that the statistics on persons with disabilities can be analysed by a wide range of other Census variables (such as age, marital status, income, labour force status, family status, etc.) and then compared with the results for the total population. What is more, the Census can give estimates for small areas and small populations, which is usually not possible in Sample Surveys because of their sample size limitations. No doubt that the Census may have problems with under-estimation of persons with disabilities, particularly with mild disability and children and older persons with disabilities and hence can provide only a crude measure of disability. But how crude will this ‘crude’ information will be? Certainly not cruder than the N.S.S.O. 1.9%. If these problems of under-estimation are taken into account while analyzing the data, the Population Census can provide baseline information on frequency and distribution of disability in the population. This frequency and distribution data is essential for policy planning and fund allocation according to the region. Data obtained in the Census can then be utilized for the development of representative surveys and studies where more detailed information can be collected on persons with disabilities. The data obtained through the Population Census could be used to reduce the inherent disadvantage of limited sample size prevalent in sample surveys. The ideal approach would then be the use of Population Census as a screening device and use it to improve the efficiency of the sample selection in a Sample Survey and thereby reduce its costs as well!

Due to Shri Arun Shourie’s initiative, a meeting was organised on 18th February 2000 with the Census Commissioner, under the Chairmanship of Shri K.V. Irniraya, Secretary, Ministry of Statistics & Programme Implementation, to discuss the various issues related to the inclusion of questions on disability in Census 2001. Dr. N.S. Shastri, D.G. & C.E.O., N.S.S.O., Shri J.K. Banthia, Registrar General and Census Commissioner, Shri Javed Abidi, Executive Director, N.C.P.E.D.P., Ms. Vandana Bedi, Executive Director, S.S.N.I., Dr. Madhumita Puri, Prabhat Society for Child Development and Shri Rakesh Arora, Project Director, District Rehabilitation Centre attended the Meeting.

We were happy with the progress and we hoped that we would succeed in making the Census Commissioner understand the importance of issue. But we were completely wrong. He was stuck with the viewpoint that, “It is impossible to collect data on disability through a Census”. The arguments that the Census Commissioner gave us for not including disability in Census 2001 were:

1. The Census on disability that was conducted in 1981 was not successful. It did not give a correct estimate of disabled people in our country. The Census Commission was made responsible for this failure and hence, the practice was discontinued.
2. The Enumerators will find it difficult to elicit information from the respondents regarding the type of disability, etc.
3. People with disabilities will hide their disability or that their families will not be forthcoming with the information.

Lets now look at the history of Census in our Country. Collecting data on disability through Census dates back to the very inception of the Indian Census in 1872. The questionnaire of 1872 included questions not only on the physically disabled but also on the intellectually disabled! The practice was discontinued in 1931. No attempts were made to obtain such information at the Census of 1941, 1951, 1961 and 1971. It was only once, after our country’s independence that an attempt was made to collect information on disabled persons under the Census. That was in 1981, because it happened to be the International Year for Disabled Persons! This practice was once again discontinued in 1991. No one even questioned WHY?

According to international figures, in 1970, fewer than 20 countries included disability questions in their National Census; in the 1980 round, the number was increased to nearly 60; and for the 1990 round, to over 80 countries. If 80 countries have preferred Census as a data collection method for disability, why can’t India do the same?

We agree that the Census of 1981 faced certain problems. However, instead of learning from the past experiences and working towards improving the and data collection methods, the Commission took the easiest and the fastest way out and altogether dropped disability from its agenda.

Even a cursory glance at the 1981 Questionnaire would have been enough to understand as to why the Census of 1981 failed. The Questionnaire of 1981 had only 3 categories – totally crippled, totally blind, and totally dumb! The definition of disability itself was so very restrictive. It totally neglected two major categories, namely, hearing impairment and mental impairment and left them out of the data collection! Another drawback was the use of the word “totally”. By doing this, they left out a large section of the population who were partially disabled. The word ‘totally’ is so ambiguous. We really wonder as to who would qualify to be “totally crippled / or totally dumb?”. The words crippled and dumb are also indicative of the awareness level with regard to disability at that time.

About their claim that the enumerators will find it difficult to gather information, we pointed out to them that the job of the enumerator is not to probe but to only faithfully record what the people have to say. Hence, any special training of enumerators was not required. And, in any case, the Ministry of Social Justice & Empowerment had given the assurance that they would take the responsibility of training and/or sensitising the enumerators.

Also, the Census cannot happen in isolation! It would be backed with a major public awareness campaign by the Government. Even the NGO sector will do whatever little they can to create awareness on the issue.

To their argument that people will hide disability, they were overlooking that there is a world of difference in the disability sector and the awareness levels & attitudes of disabled people between 1981 and 2001. Especially with the passage of The Disability Act 1995 and the growth of disability movement in the country, there is definitely much better awareness among disabled people now than it was in 1981!

And if social stigma is the reason for not including disability, then isn’t there social stigma attached to even caste, religion and gender also? Then why does the Census Commission ask questions on those issues?

The alternative that was offered by the Census Commissioner was a Sample Survey! As explained before, we argued that there was simply no justification for an either-or approach. Population Census and Sample Survey are infact complementary to each other. You first get the raw data with the help of the Census and then refine it up with the help of the Sample Surveys.

When we did not succeed in making the Census Commissioner see the simple logic behind the inclusion of disability in Census 2001, we further intensified the protest. The media was mobilised in a major way. The issue was covered extensively in all major newspapers and T.V. channels. A larger public opinion got mobilised in the process. The pressure started building up. Some MPs were also motivated to raise questions in the Parliament. Yet, nothing seemed to deter the Census Commissioner. He was still not ready for negotiations.

We then organised a Public Rally on March 7. Over a thousand people gathered at Jantar Mantar, the heart of Delhi, to appeal to the Government and Parliamentarians to include disability in Census 2001. Our demand to meet the Home Minister was accepted. A delegation met the Home Minister, Shri L.K. Advani. He assured us that he would personally look into the matter.

Five more weeks went by. Frustrated with the way things were going, we decided to intensify our protest even more. We planned to hold a day-long Dharna on April 20 outside the office of the Census Commission. We decided that if our demand was not conceded by/on April 20, we will launch a strong Nation-wide protest from April 24 onwards. We informed NGOs and disability activists across the country. The response was overwhelming.

This was communicated to the Census Commissioner. We also requested him to once again reconsider his stand on the issue. The copies of this letter were sent to the Home Minister and other Parliamentarians and political leaders. The disability sector all over the country was preparing for the Nation-wide Dharna.

A day before the proposed day-long Dharna, we received a call from the Home Minister’s office informing us that a meeting has been called to discuss this issue under the chairership of Shri L.K. Advani himself. Programme and Implementation Minister, Shri Arun Shourie, Social Justice Minister, Smt. Maneka Gandhi and the Census Commissioner were also present. Shri Javed Abidi, Convenor, Disabled Rights Group alongwith Ms. Vandana Bedi, Gen. Ian Cordozo and Dr. Madhumita Puri, represented the disability sector. The meeting lasted for over one hour. It was held in a very positive environment. Various points were raised and argued. Shri Arun Shourie played an extremely critical and positive role in convincing the other Ministers present.

The Census Commissioner had brought with himself the Draft Questionnaire of the upcoming Census. There were a total of 26 questions in the questionnaire! One of the questions was, whether you are a vegetarian or a non-vegetarian? If you said that you were a non-vegetarian, you would then be asked as to what you eat: a duck or a chicken? Shri Shourie, who is also a parent of a disabled person, asked the members present, “Is this question more important than asking whether my child is disabled or not?” There was no answer to this. It became so pathetically obvious that the Government had no other option but to take a closer look at the issue.

Shri L.K. Advani assured the DRG team that the issue will be resolved. An informal Committee was constituted on the spot to discuss the issue further. The Committee comprised of Shri Arun Shourie, Smt. Maneka Gandhi, Shri Javed Abidi, and a few other eminent people from the NGO sector, representing various disabilities. The Committee met the very next day and drafted its recommendations. The recommendations were then presented to the Home Ministry for their final approval.

On June 11, the Government made an official announcement that disability has been included in Census 2001.

The inclusion of disability in Census 2001 is a major victory for all of us in the disability sector. This whole Census episode symbolizes the status of disability in our country. It took us so many rallies, dharnas and sit-ins to convince the government about something so simple and logical as this. On the positive side, we can now confidently say that the disability sector has finally arrived. This victory has once again proved that there is a greater strength for all of us in cross-disability unity.

Now, the bigger challenge before us is that we have to ensure that this exercise is conducted in a proper manner. We must see to it that maximum disabled people are accounted for when the actual Census, as in the Head Count, takes place all over the country, in one go, during the period February 9-28, 2001.

It is an opportunity we should not let go. If we do not play our role effectively, we will have to wait for the next ten year to get a correct figure regarding the disabled population in our country. Authentic statistics that will emerge out of this exercise will have a direct bearing on policy planning, resource allocation and the well-being of 70 million disabled citizens of our country.

We therefore are appealing to everyone who is a well wisher of the disability sector to do his/her best to ensure that the message trickles down to the last village and slum of our country so that not a single disabled man, woman or child is left out of the Census enumeration in February 2001.

Rama Chari is an Executive Officer in the National Centre for Promotion of Employment for Disabled People. She is also a member of the Disabled Rights Group (DRG).

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