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

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

Student trip to India shows inequality of caste system

September 24th, 2009

This past summer, senior Hannah Siebold, sophomore Ren Ostry, Matt Portman ’09 and I traveled to Mumbai, India, for a three-week anthropological field course led by Denise Nuttall, assistant professor of anthropology. With Nuttall by our side, we threw ourselves full throttle into the unknown, hybrid culture of India.  The experience was overwhelming, yet life-changing, as we witnessed and were deeply affected by the visible and disheartening conditions that low caste (Dalit) peoples endure. We were immersed in the daily life and cultures of Mumbai: a land of spices, layers of sound, seemingly chaotic traffic, potent smells, enchanting music, intense spirituality and profoundly philosophical people. It’s a land where modernity and tradition overlap and create a contradictory society, where one is forced to look within and acutely at the world around them. It’s a land where one cannot afford to be careless while walking through streets at the risk of encountering wild dogs, auto-rickshaws and flying debris from construction; where one works day, night and straight through monsoon conditions; and where one learns the significance of acceptance and faith.

This field course gave us the opportunity to live the life of our professor — an anthropologist, ethnomusicologist, Tabla (Indian percussion) performer and scholar. We participated in the world of classical music, visited museums and temples, met Bollywood filmmakers and revered holy men — like our good friend Babaji — and completed a week of service work at the non-governmental organization, Abled Disabled All People Together.  Through volunteering at ADAPT, I realized that there are significant social inequalities and educational injustices existing in India. Particularly, the barriers in the education system facing children with disabilities are immense. These children are invisible to the Indian government, as authorities neglect to enforce handicap-accessible building features and curriculums appropriate for disabled students. For this reason, Mithu Alur and her daughter Malini founded ADAPT and are now at the forefront of the human rights struggle for children and the able-disabled.

Upon entering one of ADAPT’s seven schools, I noticed a poster on the wall that read, “A small body of determined spirits, fired by an unquenchable faith in their mission can alter history.” These words, spoken by Mahatma Ghandi, ring true in describing the people and the mission of ADAPT, which promotes the idea of inclusive education for all.  There is no discrimination of students or faculty based on ethnicity, class, caste or religious divisions. The organization’s main goal is to educate low-caste children, both able and disabled, eventually integrating them into India’s public school system. Students receive an education based on the national curriculum, physical therapy sessions, yoga classes and prevocational training. In this accepting learning environment, all children get the chance to learn together — a chance they would otherwise be denied.

As a part of our field school, Siebold and I devoted a week to volunteering at Narika Shakti, a self-sustaining, craft-based training program at ADAPT. Shakti empowers mothers of students through teaching skills they can eventually teach to their own children. ADAPT provides a place where they feel safe and comfortable, which helps them to build relationships within a productive community. For as many benefits as mothers reap from this program, consumers too have much to gain. Siebold and I will be selling Shakti’s craft products this semester at Ithaca College to raise money for Shakti and the seven ADAPT schools. The authentic and beautifully crafted handbags, journals, stationary and other crafts made by mothers at Shakti will be on sale soon outside of Emerson Suites. We look forward to working with the college community to spread awareness and raise funds for this deserving organization.

Megan Kelly is a sophomore anthropology major.
E-mail her at mkelly5@ithaca.edu
The Ithacan Online.

Studying to tell the tale

There has been a lot of controversy over whether the Right to Education Act covers disabled children, and whether disabled children should have access to the same schools as all others. Here is my own experience. I am forty three. I have cerebral palsy which has affected my speech and mobility. I use a wheelchair to move around and a voice synthesiser which is a small version of what Professor Stephen Hawkings uses. I also have two masters degrees from the UK. Yes, I am educated despite the fact that I am moderately severe! My life has been a mixture of both East and West. I have a bachelor’s degree from St Xavier’s College in Mumbai, a diploma in desk top publishing from Oxford Brookes University, two masters one from the London University, and one from the London Metropolitan University. Today, I hold a corporate job in a popular bookstore. Due to technological advances my disabilities do not come in the way of my performance, as I coordinate events through emails and sms’s.

I am glad I was educated!

Soon after my birth, my parents noticed that I was not keeping up to the milestones like a normal child. They went searching for a diagnosis for me. Every doctor they met confirmed that I would be a ‘vegetable’. The doctors told them: ‘just feed her and clothe her as nothing can be done with her.’ My parents refused to give up hope and refused to just dump me. They went in search for a diagnosis for me in England. Indeed they were right. I was assessed with high intelligence! I was put into a special school where I flourished. At that time inclusive education had not happened as it has now, when it is a mandate with Acts of Parliament and budgetary allocations supporting it. I was able to read by the age of one and a half years!  Six years later my parents returned to India, they found no school for children like me. It was a culture shock to confront the oppression around me. When I used to step out, people would either stare at me or make remarks openly in front of me. They would offer unsolicited advice: ‘have you tried homeopathy or why don’t take her to a fakir or a guru, she will be cured. Why don’t you put a collar around her neck? It must be her last life. She doesn’t need to go to school keep her at home’

These kind of comments came from everyone, including the educated rich. I was even discriminated against at children’s birthday parties and social events. I was once stopped from entering a swimming pool because disabled people were considered infectious! Parents with disabled children were frowned upon. I am ashamed to say some of the top families of the country were ashamed to bring out their disabled children into their own drawing rooms in fear of the kind of behaviour that would be meted out. They say ignorance is bliss, but in this case ignorance was harmful and oppressive. The negative attitudes of people would make me cry and my mother would comfort me, but needed comforting herself. I was miserable. Socially, I felt rejected and isolated. On top of this, I had no school to go to.  It was then that my mother, who was influenced by the British model of educating disabled children, opened India’s first special school. The first Spastics Society model was started in 1972 in Colaba, Mumbai. Subsequently, other schools began in Calcutta, Delhi, Madras and Bangalore. My whole family came out in support of children like me.

For me life has not exactly had a silver lining. Looking back at the age of 43, I ask myself — was a special school enough? I was in segregated education till I was 17. Seventeen years of being shut away from my brothers and sisters, from my companions, due to my disability. The system disables one further. Special schools imprison disabled people. Segregation dehumanises.  Fortunately my education was a mixture of segregated special schooling and inclusive higher education. The masters degree changed my adult life. It taught me how to think. It taught me to articulate my inner traumas that come from living in a world full of non-disabled people. It gave me the freedom of speech and the freedom of my age. For the first time in my life it has made me believe in myself and what I stand for.

The most important input that empowered me was education. What would I have done without education! The sad fact however is that for every disabled person who has the privilege of a special school, there are hundreds of disabled children who are shut out of any school at all. Today, I am proud that the government has mandated all schools to be inclusive.  With the Right to Education Act including ‘all children with disabilities, I feel proud that the children of tomorrow will have an opportunity as a right to be able to study with their brothers and sisters in regular schools, and hopefully doctors will not call disabled people ‘vegetables’, and schools will not shut their doors to them, and the community will not shun them.

The writer is a disability activist and senior events manager, Oxford Bookstore (Mumbai)

Indian Express