Category Archives for Census

Advocating a bold attitude

Malay Desai

At a time when self-promotion is second nature to many and earning print space often requires desperate efforts, we are surprised to meet 42-year-old Nilesh Singit. The kurta-clad disability rights activist, appearing more like a JJ School of Arts student, flatly refuses to be interviewed, citing ‘typical’ treatment meted out to the disabled in ‘such’ articles. We agree, many stories of differently-abled people are either too sympathetic or overtly glorifying, but assert that we won’t veer in either direction.

“Things are blown out of proportion, a small achievement is written as ‘overcoming all odds..’ he tells us later, having agreed after a mediator’s word. So here are some facts about Singit’s life, with the least usage of superlatives: Nilesh belongs to a large joint family hailing from Karnataka but has grown up in Mumbai. The cerebral palsy (a group of movement disorders caused by damage to the brain before, during or just after birth) he was born with was nearly invisible for his siblings and cousins whom he shared a close-knit childhood with. At his school (special one for persons with disability – PWD, an idea he’s against) and later, his inclusion factor wore off a bit. “Over the years as a PWD and as a rights advocate, I have realised that things come in packages of advantages and disadvantages. I have come to accept it, why rue it? Those who ‘acquire’ disability have difficulty accepting it,” he feels, likening himself to a person ‘who failed the medical test by a whisker and could not pursue his/her dream of being an air force pilot.’ Surely a perspective we haven’t heard before.

It’s this attitude (and the eloquence in conveying it) that we quite relish, despite his career having enough to gush about. Once before getting on to a flight, Singit was asked for his medical certificate, which he didn’t have. A doctor was called, who then proceeded to ask him questions, to which Singit interrupted and stopped short of lambasting him and the crew, before making his way into the flight. Turned out that the doc was asking questions related to Down’s Syndrome. “Where’s your certificate?” Singit asked them back.

His flamboyance may have to be tucked in at various moments though, as he’s working in one of the most challenging sectors of the government – advocacy. As a research officer at the Centre for Disability Studies, Nalsar University (Hyderabad), he writes papers, conducts audits and litigates for the betterment of PWDs in India, and not all people he meets are smooth to deal with. “I’ve been caught up quite a number of times in what is termed as ‘friendly fire’. I always carry a white hanky,” he claims, tongue firmly in cheek.

That said, those who know Singit well don’t really risk not taking him seriously as the man has arrived at this position after much experience in the field. An MA in Literature, he pursued disability studies and went on to play several key roles in the field – trainer, advocate of rights and researcher being some. “There is a dearth of writings on disability; as an access audit consultant I found that even though there are tonnes of data on universal design, there is not much on adaptation and customisation for an individual’s needs,” he informs. Of course, being a PWD himself was a great influence in advocating for the UNCRPD (UN Convention on Rights of Persons with Disabilities), an international instrument that provides PWD with the same human rights as everyone else, which is sanctioned by India. “Disability studies are the way to get the PWD in command of his/her environment and life,” he admits.

His strong opinions and voices for and against all things perfect and imperfect come out unfiltered through his writings on the web. His blog, ‘Disability News Worldwide’ is replete with informative, transformative, even evocative posts. Another blog carries his rant against the Lokpal and an old ‘open letter’ to Shah Rukh Khan, while his social network profiles bear pointers to the range of work he’s accomplished and waiting to do. But it is only after hearing his plans do we judge him as a passionate writer: “I regret not having written as much as I ought to have. I think I have in me a book or two I’d like to begin writing sooner than later.”

“I would rather write than be written about,” he says of his above mentioned reluctance, explaining that the very act of overcoming the stereotype sometimes reinforces the stereotype. We don’t know if this article would make the cut with him, but we sure have returned more insightful after having met him.

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

“You move forward in life with your intellect and thoughts, not with your legs,” Neeta Panchal

I first saw her when she wheeled herself into the coffee shop of the hotel I was staying in Ahmedabad. She and her husband made an interesting sight! People who had come down for dinner stopped in their stride. Her husband on crutches with their baby boy in a sling tied on his chest and she following on her wheelchair. It was endearing, if not anything. And then when she starts talking and you get to know her, you realise she is a bundle of energy with a zeal for disability rights. Her vivaciousness is infectious. Meet Neeta Panchal of Disability Advocacy Group, Gujarat as she shares her story with Dorodi Sharma of D.N.I.S.

D.N.I.S.: You acquired your disability when you were barely 17 years old. Can you tell us about the incident?

Neeta Panchal: It was during the huge earthquake that ravaged Gujarat on Republic Day in 2001. I was 17 years old at that time and was on my way to school along with 7 other girls. Suddenly, the earth shook. Since we stayed very close to the Pakistan border, we thought that it must be a war that had started. Unknowingly, we rushed into a building to escape what we thought was a bombing, only to realise that the whole building was crumbling down on us. My friends died. I was caught between two of them but somehow I survived.

I was trapped in the rubble for more than four hours. When they were pulling me out, I couldn’t feel my legs anymore.

D.N.I.S.: How did you overcome the trauma?

Neeta Panchal: It wasn’t easy. When the doctors kept telling me that I had been badly injured and that I was paralysed waist down, I was still hopeful. I thought I was in a hospital after all and I would get well soon. Finally after spending more than a year there, I realised that this was serious, that I would not be able to walk ever again in my life. It shook me. I went into depression. At that time I was also engaged to be married. When the boy’s family found out that I had become disabled, they broke off the engagement. I tried to commit suicide twice. Luckily, my family rallied on to get me out of that mindset. My brother especially. He showed me Sudha Chandran’s film called ‘Nache Mayuri’ which is her story about being a dancer despite losing one leg. Slowly, I came out of my depression. I realised that if God has saved my life, He probably had a reason.

D.N.I.S.: How did you decide to join the sector?

Neeta Panchal: That happened much later. The earthquake had taken a toll on my family. I lost my sister and grandmother. We lost our house and all our belongings. We had nothing. To top that, my family suddenly had to look after me. I did not want to be a burden. So I started a small shop of imitation jewellery and then moved on to open a P.C.O. By this time, I was friends with my disability. In 2004, I participated in the National Para Games in Bangalore and won a silver medal in wheelchair race. In 2006, I won the gold medal in the same event. It was only after I came to Ahmedabad that I entered the disability sector.

D.N.I.S.: You have a very interesting love story – almost straight out of a romance novel. Please do share how it all began.

Neeta Panchal: Well, Handicap International (H.I.) conducted rehabilitation camps in Kutch after the earthquake – teaching us basic daily activities, etc. I had several surgeries after the earthquake (Neeta has had 22 surgeries till date and calls the operation theatre her ‘home theatre’!). I needed to come to Ahmedabad for one such surgery. I did not know anyone here and my family was also from a very simple background and was not sure about managing things in a big city. I sought H.I.’s help. Parag (Panchal) who works with H.I. was asked to help me. That’s how we met and fell in love in the hospital.

But our families were dead against this match. Parag’s family because I was more severely disabled than him (Parag is orthopaedically impaired because of polio) and mine because they did not know anything about Parag. We went ahead against our families’ wishes and got married in the hospital on May 25, 2006.

D.N.I.S.: Did you families reconcile to this? Were there any problems?

Neeta Panchal: Our families reconciled to our marriage but there were other problems. My in laws’ house was not accessible. Parag walks with the help of crutches and he could move around the house. I am a wheelchair user and there were places within the house which were inaccessible. We had to get a place of our own. We spent all our money on it. There were days when we did not know where the next meal was coming from.

D.N.I.S.: You also have a two year old son. Being a paraplegic, what difficulties did you face during your pregnancy?

Neeta Panchal: Several doctors told me I was crazy to think of conceiving. Finally I went to a doctor in a Government hospital. I told him that he does not need to worry about my decision and asked him to guide me through my pregnancy. I was confident that I could have a baby like any other non-disabled woman. It was not easy though. The delivery was even more difficult. There were some 20 plus doctors in the operation theatre. But inspite of everything, today I am a proud mother.

D.N.I.S.: How did Disability Advocacy Group (D.A.G.) happen?

Neeta Panchal: Parag works at H.I. and I also got involved with a lot of activities that they do. We soon realised that there was no forum for people with disabilities in Gujarat. There were big organisations working for disabled people while the latter were just ‘beneficiaries’. A group of us decided to form a platform which any person with disability can access. That is how the idea of Disability Advocacy Group (D.A.G.) happened. It was established with H.I.’s help and support. It was an informal network for a few years till we finally registered it in 2009. We now have 2,400 members across Gujarat. Everyone at D.A.G. comes in her/his individual capacity. We do not believe in the tag of an organisation. Our only identity at D.A.G. is that we are people with disabilities.

J.L. Nakum of Jamnagar is currently the President and I am its Secretary.

D.N.I.S.: What does an average day in Neeta Panchal’s life look like?

Neeta Panchal: Very ordinary! I have made my entire house accessible. I do all my household chores from cleaning to cooking on my own. D.A.G. does not have an office yet. I do all my D.A.G. related work from home. Doctors keep telling me to slow down – I still have a lot of health issues but then I got to do what I got to do.

D.N.I.S.: Any message for our readers?

Neeta Panchal: I think disability is in one’s mind. I have learnt a lot in the last 10 years. I was a simple girl from a remote part of Gujarat. Today I have participated in so many national and international events and have got to meet so many interesting people. I couldn’t speak anything but Kutchi language earlier, today I speak Hindi and broken English. I have come a long way. Of course, all this would not have been possible without the support of my family, my in laws and my husband. People today look upto me as a role model. What more can I ask? Zindagi me pairon se nahin, dimag se chalna! (You move forward in life with your intellect and thoughts not with your legs.) Everything happens for good.

DNIS

Finally, question on disability to get priority in 2011 census

Sumitra Deb Roy TNN

Come February and census enumerators will be asking specific questions on the type of disability in families, making it the first of its kind exercise while counting heads.The importance attached to the move can be gauged from the fact that it is among the top 10 questions. In fact, it appears even before the question on one’s mother tongue.

Activists were upset as most enumerators had ignored questions on disability in the 2001 census. “This time, the question will be number 9 on the list as against number 15 in the 2001 census,” said an official.  Another remarkable feature, say activists, has been the demarcation made between mental retardation (inborn) and mental illness (could be acquired) in the questionnaire, which will seek information on seven specific disabilities like visual, audible, speech, locomotor, mental retardation, mental ailments and multiple disabilities. A special addition is of the choice ‘any other’ under which every other form of disability will be listed.

“This is the first time in the history of the country that there will be actual enumeration of disability,” said Javed Abidi, honorary director of National Centre for Promotion of Employment for Disabled People (NCPEDP).  “The figure of just 2.1% population with disability of some form is gross misrepresentation. Even Sri Lanka has a population of around 7% having some kind of disability,” Suhas Karnik, honorary secretary, National Association of Blind said, adding that the UN has estimated that at least 10% of Indian population could have disability of some kind.  “During the earlier census, most enumerators either skipped the question on disability or did not fill the questionnaire completely,” said Nilesh Singit, an activist.  "However, this year we are hoping for a serious change in their attitude and awareness. Only a correct estimation can help the government plan policies and make appropriate allocations,” he said.

Times of India

EU development cooperation; does disability count?

Europe has declared 2010 to be the year against poverty and social exclusion. It is a good occasion to look at the European policy towards a group that knows only too well what poverty and social exclusion mean: people in developing countries living with a disability. Does European development aid reach people like Lila Maya in Nepal, who became blind as a baby and was isolated and mistreated until a local NGO helped her set up her business? Or Ricardo in Mozambique, who never went to school because of his paralyzed legs?

A vicious cycle
Poverty, exclusion and disability are interrelated. Poverty causes disability, because it means that people do not have access to health facilities, information and adequate food that could prevent a simple disease to develop into a disability. With proper treatment, Lila Maya might have not become blind. Disability in its turn causes poverty, because practical problems and social stigma exclude people with a disability from education and work to earn their own living. Ricardo makes a little money by repairing the clothes of his neighbours, but what would his life have looked like, if he had had access to school and a wheel chair?  According to the United Nations 650 million people live with a disability and 80% of those live in developing countries[1]. The European Union is a major player in development cooperation; it provides over half of all official development assistance worldwide[2]. An inclusive development policy of the EU can therefore really make a difference for people with a disability.
Beyond good intentions
In 2009 the EU ratified the United Nations Convention on the Rights of Persons with Disabilities. It is a legally binding convention which stresses the importance of international cooperation and states that countries should ensure that: ‘that international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities’[3]. This means that, besides and above the good intentions which the EU expresses by announcing a Year against poverty and social exclusion, it has is a legal obligation to ensure that development cooperation reaches people with a disability. The Convention is an important landmark signalling a change in attitude.  In stead of talking about the handicapped who need to be cared for, people with a disability are now recognized as persons who have the right to participate in all aspects of society. Only countries that have ratified the Convention are bound to it. The EU already took this important step, but a number of European countries such as Norway, the Netherlands, Poland and Italy are still missing on the list.
Towards an inclusive European development policy
Europe has shown its commitment to the rights of the Lila Maya’s and Ricardo’s in the world. But to make sure they can
really benefit from European aid, more steps need to be taken.
  • Ratify: More countries should ratify the UN Convention on the Rights of Persons with Disabilities. This will show their real commitment and helps to make sure that we will come from good intentions to realization of rights. The EU should urge those member states that have not done so yet, to ratify the Convention as soon as possible. Together, the European countries can encourage other countries to ratify and of course to implement the  Convention.
  • Plan: The start of implementation is developing a good plan. A quick scan of relevant EU policy documents on disability and development does not give much hope. The Commission Work Programme 2010 refers to disability only once, in an annex and not in relation to development. The General development framework, makes no mention of disability at all. The Guidance Note on Disability and Development, published in 2004 by the European Commission[4] provides a number of useful principles, but apparently these are not put into practice. A good sign is that the Directorate General Development is considering to add disability to the list of ‘cross cutting’ issues. Recognizing disability as a cross cutting theme will help to ensure that attention will be paid to disability in all development activities: ‘mainstreaming’ disability. Already, the EU requires applicants of development grants to explain how the grant will benefit people with a disability. Besides mainstreaming disability in development activities, the EU will need to facilitate disability-specific services and support for disabled persons to empower themselves and to get access to mainstream services.
  • Learn: Developing such a plan is not easy. Implementing it will be even more challenging. Mainstreaming disability is a new concept and there are no studies yet that prove which strategies are successful. A lot can be learned from the experiences regarding gender and development. It is also important to do research regarding disability and development. Lessons should be drawn from good and bad experiences, to improve future  policies.
  • Measure. To know if efforts are effectively reaching people with a disability, it is important to collect data before, during and after interventions. How many people with a disability are living in the project area? Which disabilities do they have and how does this affect their ability to benefit from development efforts? Targets will need to be set on how many people with a disability will be reached by a certain effort. In most cases, the required data will be unavailable. People with a disability are not counted and therefore cannot be accounted for. Starting to collect these data will make them visible. This will require ‘disaggregation’ of data: asking projects to report on how many of the people they are people with a disability, just as they are often required to do regarding women and youth.
  • Involve. Last but certainly not least,  people with a disability should be involved in all the above. ‘Nothing about us without us’ is the adagio of the disability movement.
[1] UN 2006, Some facts about persons with disabilities, http://www.un.org/disabilities/convention/facts.shtml

Published by: Dutch Coalition on Disability and Development (DCDD) -Saskia Bakker

Disability and Census of 2011

Counting the “invisible” children of Mother India.

While the current focus of political debate is on ‘caste and census,’ there is another important aspect that deserves attention. This concerns disability.  For decades after our independence, there was no effort to actually count how many of us have any disability. There were estimates-informed or otherwise- but no factual figures. All our  government’s plans and budgets, rules and regulations, proclamations and posturing were built upon shaky foundations. A new Ministry was created, staffed and has been operating for several decades on that basis. It seemed to suit every one, except the millions who were thus rendered ‘invisible’. This lasted for 54 years. But, despite their  ‘invisibility,’ the disabled and the NGOs dealing with disability made progress on the ground.

Let me illustrate with an example. There was no government or non-government organisation looking after the needs of children with cerebral palsy, till a young mother of a child with cerebral palsy set up the very first Spastics Society of India, Mumbai (now known as ADAPT-Able Disabled All People Together)) in 1972. The handful of children included her own daughter. Dr. Mithu Alur, our Chairperson, had thus created a unique institution, offering all facilities under one roof, including diagnosis, physiotherapy, physical aids, schooling, parental counselling, etc. Over time, these services also came to include research, teachers training, admission of older children in “normal” schools and colleges, job-oriented training and placements and so on. This model is now replicated in 18 States. Almost all the organisers have themselves been trained at Mumbai. These NGOs operate independently, while forming a Regional Alliance, constantly coordinating, cooperating and learning from one another.

During preparations for the Census of 2001, several NGOs (including us) approached the Census Commission with the request that they should also count the disabled in our country. Obvious arguments were put forward. Approaches were also made through the concerned departments of the Government. Unfortunately, nothing worked; we were simply told that the disabled could not be included. The NGOs were persistent; the matter was taken to the political level. Eventually, it was decided that the Census would include, for the very first time, a counting of the disabled. However, this historic decision was taken at a very late stage, in the face of consistent opposition by the Census Establishment. Perhaps, their subsequent actions were reluctant and grudging. Perhaps, there was not enough time for the necessary preparations. It is also possible that, despite their best efforts, framing of appropriate questions, their translation into the required languages, training of the enumerators etc. left much to be desired. For all these reasons, the results of the Census 2001 were deeply disappointing for the disability movement.

For example, the Census of 2001 concluded that there were only 2.13 % or 21 million Indians with any kind of disability. This was a fraction of the estimates by most experts. This has since been amply proved by a World Bank report of 2007. This report was “prepared at the request of the Government of India”. In fact, it acknowledges “the guidance of officials of the Ministry of Social Justice and Empowerment, guidance provided by an inter-ministerial Technical Advisory Group set up for the work by MSJE and consisting of representatives from the Ministries of Health, Labour, Human Resource Development and Rural development, as well as an NGO representative.” Similarly, it acknowledges the help of officials in several States including Rajasthan, Karnataka, Orissa, Uttar Pradesh and Tamil Nadu. In short, the World Bank Team had the full backing and support of the Government of India and many State governments. The report is entitled ‘People with Disabilities in India: From Commitments to Outcomes’. It concludes: “While estimates vary, there is growing evidence that people with disabilities comprise between 4 and 8 per cent of the India population (around 40-90 million individuals)”

Obviously, there is a vast difference between 2.13 per cent or 21 million ‘counted’ by the Census of India, and 4-8 per cent or 40-90 million estimated by the World Bank team. Several NGOs, including ADAPT, have been interacting with the Census Commission, individually or in groups. The Commissioner, Dr. C. Chandramauli, has been positive and open-minded. In a recent letter to him, based on our own experience, and consultations with our regional partners and other experts, we have made a number of recommendations. These take into account the Commission’s constraints of space and format, the work already done, and recommendations made by others in the disability movement, like a Delhi-based group which had also held wide consultations. For example, along with the Delhi group, we have endorsed the inclusion of four types of disability in seeing, hearing, speech and movement, repeated from the 2001 census. We have also endorsed the recommended inclusion of Multiple Disability and Mental Retardation. But, since the latter expression is no longer used, we propose “Remembering and Concentration” instead. Thus, there is already an agreement on the types of disability.

Equally important is the framing of questions under each type. Questions must be activity related; these must also be relevant to our circumstances; only then can these elicit accurate responses. For example, the question suggested by us on speech is: “Do you have difficulty in speaking in your usual language?” The latter language is included because, in the course of a research study with UNICEF involving 31,000 children, we had found that children who had migrated out of their home states had a linguistic problem, which may be reflected as a speech problem. We have also submitted Hindi translations of these easy-to- understand questions to demonstrate that similar translations in other languages could be equally easy and understandable. Contrary to speculations, there is thus a growing meeting of minds between the Census Commission, on the one hand, and several sections of the disability movement, on the other. Thus, we can hope that the Census of 2011 will finally be able to give us a correct count of the disabled in our country, making them truly visible.

By Kamal Bakshi
(A former ambassador, and Vice-Chairperson of ADAPT, Mumbai.)

© Copyright 2000 – 2009 The Hindu

Disability law: Hunger strike called off

After the Centre partially conceded their demands, a group of disabled people on Wednesday called off their hunger strike held to protest against their poor representation on a committee which is drafting a new law to protect their rights.  Javed Abidi, convenor of the Disabled Rights Group, said the strike had been called off after the Centre’s positive response.

A S Narayanan, secretary of the National Association of the Deaf, told The Indian Express through a translator that Gopal Reddy, personal secretary to Social Justice and Empowerment Minister Mukul Wasnik, had confirmed that six more people would be added to the committee, of whom three were disabled. This would bring the total number of disabled people on the committee to six.  Following pressure from various disabled groups, the Social Justice And Empowerment Ministry had formed a committee in April to draft a new legislation, reflecting the UN Convention on the Rights of Persons with Disabilities, to replace the Disability Act, 1995. The first meeting of the committee will be held on Thursday.

Disability activists are looking for three main changes to the Act.

VINAY SITAPATI
Indian Express

Disabled people plan hunger strike in Delhi for rights law

A group of disabled people will begin an indefinite hunger strike from Wednesday outside the Shastri Bhawan, which houses many central government ministries, to protest their poor representation on a committee drafting a new law protecting their rights.

Following pressure from various disabled groups, the social justice and empowerment ministry in April ormed a committee to draft new legislation, reflecting the UN Convention on the Rights of Persons with Disabilities, to replace the Disability Act, 1995.

The first meeting of the committee will be held June 10.

“The government has overlooked the basic tenet of the convention and the bedrock of the disability rights movement – ‘Nothing about us, Without us’. The 27-member committee appointed by the government has only three people with disabilities,” said Javed Abidi, convener of Disabled Rights Group.

A group of disabled people also met Social Justice and Empowerment Minister Mukul Wasnik May 26, demanding an increase in the number of disabled people in the committee, he said.

“We will sit on indefinite hunger strike till our demands are accepted,” Abidi added.

Enabling the disabled

With sensitised education for the disabled high on Human Resource Development Minister Kapil Sibal’s agenda, all eyes are on the 2011 Census which will provide crucial statistics on the number of disabled Indians and what disability they suffer from. But a raging dispute has broken out within the disability sector about the exact question in the Census questionnaire and Census Commissioner Dr C Chandramouli is being lobbied by different groups.  World over, asking the right question has proven the key to getting accurate disability figures. According to a 2009 World Bank Report, in countries which ask a simple yes/no question, disability statistics range from 0.5 per cent of the total population (Nigeria) to 3.8 per cent (Ethiopia).  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 country’s 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. 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 ADAPT’s 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. Alur’s 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.

Vinay Sitapati
Indian Express New Delhi : Wednesday, Apr 28, 2010