Campaign on disabled to kick off on Nov 10 2011

BHUBANESWAR: Badhte Kadam _ a nationwide awareness campaign to uphold rights of people suffering from mental retardation, mental illness, cerebral palsy and autism _ would be flagged off in the State on November 10.  The nationwide endeavour is initiated by National Trust, an autonomous body under the Union Ministry of Social Justice and Empowerment.  It was launched last year in an effort to make people aware of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) to which India is a signatory, provide understanding of disabilities and celebrate diversity.

As part of the campaign, teams will be formed which will travel by road and stop at different locations to conduct awareness drives with the help of local NGOs.  Last year, the Badhte Kadam campaign was organised in eight coastal districts of the State and this year it is being planned to be extended to at least 10 more districts. The Badhte Kadam 2011 will conclude on December 2, a day before the World Disability Day on December 3.  Informing this at a media conference here, coordinator of the State chapter of National Trust Sanyas Behera said the campaign not only aims at making all sections of society aware of the� plight of the handicapped people but also to boost the latter’s morale.

The Open Learning Systems (OLS), a local voluntary� organisation, will coordinate the campaign in the districts.  “To bring a fresh perspective that would help people with disability live as one amongst us with as much rights and responsibilities is the main objective of the campaign,” said Behera, also a member of OLS.  Photo and poster exhibitions, display of aids and appliances used by the disabled, simulation games, talent hunt, essay writing, art competition and signature campaigns will be organised as part of the campaign, he said.

Indian Express

Let Us ACT Together!

Article on Rights of Persons with Disabilities Act working draft

From its very conception, the Rights of Persons with Disabilities Act has been fraught with controversies; quite a surprising situation given that most factions fighting for disability rights in the nation supposedly desire to present a united front. India, having signed and ratified the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) in October 2007 with astounding alacrity, took almost three years to decide to draft a new piece of legislation, instead of bringing about over 100 amendments to the existing The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act of 1995, to align laws in the country with international obligations.

The recent past has seen a flurry of activity in the written media about the working draft of the Act that was released on the 20th of November, 2010. As is the situation in case of every decision dealing with a great number of people with divergent ideas, this draft too has come under fire on several grounds and has received bouquets as well. The only crucial factor, however, is that the draft, termed as a working draft seeks not to be a decision, but a deliberative instrument meant to change as substantive suggestions come in.

One of the principal opponents of the law, Mr. Javed Abidi, Convenor of the Disability Rights Group, is of the opinion that the current draft legislation is, in entirety, against the letter and spirit of the UN CRPD. His opinion is based on the belief that the voices of persons with disabilities went unheard in the drafting process and that the Committee set up to draft the law is inept and displays a lack of “brain trust”. He has made it clear that in his belief, the Committee has lost any faith that he had in it and that it, along with the legal consultant, ought to be dismissed. Taking a strongly opposing stance, Mr. Prasanna Pincha, Special Rapporteur at the National Human Rights Commision, in his open letter detailing his opinion of the draft on first reading, states that “the working draft, in a certain sense, is way more radical/progressive than even the UNCRPD.” He goes on to congratulate the Committee and the legal consultant for executing the task of drafting such landmark legislation “with remarkable sensitivity and alacrity”.

Mr. Abidi insists that expert knowledge and the requirements of persons with disabilities have been disregarded time and again by the legal consultant, Dr. Amita Dhanda, and the Committee. On the other hand, the legal consultant informs that sub-groups had their deliberations with the legal consultant after consulting with larger civil society. These opinions were proactively obtained by committee members, for example on women with disabilities, even whilst in consultation with the legal consultant. The duty to seek opinion of civil society was on Committee members’ not the consultant; it was a duty which the members fulfilled in both letter and spirit. Another source who was intrinsically involved in the drafting process and worked on accessibility points out that the civil society has been involved throughout. The one meeting in September where the civil society was invited, “they derailed the entire process”. Also, the chair was always open to suggestions via e-mail. Mr. Mahesh Chandrasekhar, Advocacy Coordinator at CBR Forum opines that the manner in which the draft law has been published without any explicit statement soliciting civil society participation facilitates the creation of a situation where “the few people who have been in someways [sic] connected to the members of the committee are somehow trying to be engaged in this process”

It is, however, interesting to note that the very idea behind having a working draft is to listen to the suggestions of experts and concerned parties and make changes if required. The first explanatory note stating that “this working draft has been put together so that the Committee, the Disability sector, the larger civil society and the duty bearers can through a process of dialogue and deliberation arrive at a draft which can be accepted by all” seems like an explicit enough solicitation of expert opinion and civil society participation. It seems unwise to squander such an opportunity, basing one’s arguments, against the fruit of eight months’ worth of effort of numerous individuals, on grounds such as the fact that the Committee met for short hours with long gaps of forty days in between and that it was “lazy”. While much of the criticism leveled against those involved in drafting the law may be justified, one wonders whether it makes a substantive difference in ensuring there exists robust disability rights legislation within the nation. Given the parallels being drawn between the drafting process of the UN CRPD and that of the draft law under discussion, it would perhaps be pertinent to highlight the united efforts of the disability sector in the case of the former to present constructive criticism. The remarkable contribution of disability rights groups in the framing of the UN CRPD came from a conscientious attempt to criticize effectively and provide feasible alternatives. It certainly would be preferable if those criticizing the current working draft had substantive changes in mind and alternatives to offer, as was the case during the drafting of the UN CRPD. While much has been said about representatives who weren’t allowed a say in the drafting of the law, the fact that deliberations on the working draft are on and this is the ideal time to send in any substantive or structural changes that one would want to see in the draft seems to be ignored.

A question that has gained prominence of late is the suggestion of a Disability Code with dedicated legislation for special situations and for authorities such as the Disability Rights Authority. The suggestion was made for several reasons, such as the requirement of dedicated legislation that details the functioning of important bodies like the DRA and the constraint in space if an all encompassing law was to be drafted. Critics claim that this is against the wishes of the disability sector and is legally not viable while Dr. Dhanda states that it is a mere suggestion that arose out of practical discomfort and that it would effectively deal with issues of reconciling inherent differences and also allow for greater detailing to define the accountability of the DRA or rules governing it, etc. Mr. Pincha also wholly endorsed the concept, affirming that “common law to address commonalities, and specific laws, to address specificities depending on need and necessity” is what is required. A meeting held by CBR Forum in Bangalore on the 20th of December simply concluded that the idea required further discussion on public forums. All that this goes to show is that various shades of opinion exist within the disability sector and constructive suggestions and open discussions alone can hope to solve the deadlock one seems to notice forming. What effort has, thus far, been expended at criticizing issues that can neither be mended nor bear any consequence to the progress of the law, could perhaps now be used constructively to build on the foundation that the working draft sets.

It has been said quite succinctly that “There is no odor so bad as that which arises from goodness tainted.” One cannot help feeling that those advocating unity amongst and justice for the 70 million people with disabilities in India are the very same stalwarts who leave the sector fragmented. It is, perhaps, time for sincere attempts at reconciliation and for real and substantive criticism, if this landmark piece of legislation detailing the rights of the aforementioned 70 million people is to finally materialise.

Anindita Mukherjee

http://news.oneindia.in/feature/2011/01-04-rights-of-person-disability-act-draft-part1.html

http://news.oneindia.in/feature/2011/01-04-rights-of-person-disability-act-draft-part2.html

More than ramps needed to make education barrier-free

The state government’s recent announcement that it will focus on making secondary school education barrier-free has been welcomed by activists though they add that more than just ramps and resource centres are needed to make the education system truly inclusive.

"We need to change exam methodology to make it more inclusive as well as have a curriculum that allows for people with different abilities," says disability rights activist Rajiv Rajan. "It’s mainly the special schools and NGOs that offer vocational training and skill development like carpentry or food processing." These NGOs are mostly based in urban areas, while a large proportion of disabled children live in villages.

The state government recently said it plans to introduce ramps, modified toilets and resource centres for disabled children in classes IX to XII. The project will be part of the centrally-sponsored Inclusive Education for the Disabled at Secondary Stage. Since the Sarva Shiksha Abhiyan only covers children with disabilities up to class VIII, the new scheme aims to help children continue their education in an inclusive environment in regular schools.

"This is a good first step, but we need more," says B Meenakshi, assistant co-ordinator, Disability Legislation Unit, Vidyasagar, an organisation working with the disabled. "We need to look at different evaluation and teaching methodology. For instance, if a child cannot do lab work, he has to have another option. The alternatives are available in the curriculum but many mainstream schools do not offer them," she says.

"Disabled children need to pass exams and go on to regular colleges and training institutes and become independent," says a representative of the special school at the Spastics Society of Tamil Nadu (SPASTN), a voluntary organisation for people with disabilities.

Right now, children who are academically inclined but cannot take regular board exams follow the Open Basic Education (OBE) system which allows them to choose subjects they are good at. They are then sent up for school-leaving certificate exams through the National Institute of Open Schooling ( NIOS) which gives them nine chances over the course of five years to take exams. "This system grades the child based on his or her level and ability but not all the mainstream schools provide it," says the SPASTN representative.

Meenakshi says the education system will become truly inclusive only when hostel as well as transportation facilities take in the needs of the disabled.

Chennai, Times Of India

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

What Women Want: The ability debates

DEEPA ALEXANDER

The triumphs and disasters of the differently-abled in India are two ends of the spectrum. Among the 70 million disabled in our country are those who have conquered peaks, won gold at the Paralympics, and raced in Himalayan and desert car rallies. But, millions more struggle to meet daily challenges in a society that tends to portray the disabled  as either heroes or victims with little or no access to their rightful resources. The proposed amendments to the Copyright Act (1957) are seen as restrictive and discriminatory, as the copyright exception, which aims at allowing persons with disability easy access to copyrighted material, applies only to certain types of disability. We spoke to activists who address these issues, not as charity or welfare but as matters of development and dignity.

Change in attitude

National Trust’s programmes work on building capacity, changing patronising attitudes, building trust in the abilities of people with developmental disability and creating an equal playing field. Unfortunately, deeply entrenched attitudes  continue to exclude people with disabilities. Even if an opportunity is given, it is given only once; if a person with  disability fails, incapacity is assumed. But, in the recent case of a young woman with intellectual disability who had been raped in a women’s home, the Supreme Court upheld her right to ‘choose’ to keep her baby, and she has proved to be a competent mother. However, the disapproval of the intelligentsia in the media is an indicator of the social prejudices people with disabilities have to live with.

Implement their rights

Ability Foundation’s thrust is on creating an equitable society. Through our magazine Success & Ability, we spread this message at a time when service to the disabled was seen only at the physical, and not at the emotional level. Persons with disabilities need access to inclusive education, employment and public places. Being ‘accounted’ in the Census 2011 will open up a plethora of possibilities. Accurate data will enable Government intervention at various levels, leading to proactive action. We need ramps for wheelchair users, audio announcements in bus / train stations for the visually-impaired, and video announcements for the hearing-impaired. Floor numbers in Braille for lifts, sign language interpreters in every hospital, police station and court of law, slip-proof flooring in malls, and large-print books in public libraries for those with low vision are the other needs. The implementation of the rights of persons with disabilities as per the United Nations convention and the Persons with Disabilities Act (PWD), in letter and spirit, is also essential.

A development issue

My daughter Tamana was born with cerebral palsy. It pushed me to found an organisation in 1984 to fulfil the dreams of children with special needs and those of their parents. Therapy and counselling for children and their families is essential for optimum adult rehabilitation. Since Independence, the disabled have been categorised along with sections such as women, Scheduled Castes and Scheduled Tribes. While these have had powerful political lobbies, there has been no spokesperson for the disabled. The dichotomies between the Ministries of Education and Social Justice further worsen the exclusion. Most policy-makers look at disability as a welfare, not a development issue. Disability should be jointly addressed by the Ministries of Health, Women and Child Development, HRD, Social Justice and Empowerment. The definition of disability in the PWD Act does not include autism, which leaves out nearly two million autistic persons in India. Admitting disabled children in normal schools is not enough — you need to have professionally trained staff, who are sensitised. I also hope for a different curriculum for special children, even as they are being integrated in the mainstream. Better pay scales will also bring in more jobs in the disability sector.

Public-private partnership

NGO-run establishments provide free schooling for disabled children. The Government has provided legislative intent  through the Inclusive Education Act, which makes it mandatory to include all kinds of impaired children. However,  Government schools that cater to the poor are generally marked by grossly inadequate infrastructure and teaching  aids, so imagine the predicament of the disabled. I would like a public-private partnership for day-care and residential  institutions which provide educational and recreational service on a long-term basis. This needs to be supported by   research institutions which focus on technology, communication and teaching aids. We need to benefit from global  expertise, and customise them to local needs. As Childline’s primary mandate is child protection, I feel that the  Government must compulsorily provide for a child protection policy in any institution that deals with disabled children, as, such children are more vulnerable to abuse.

The copyright angle

The Centre for Internet and Society is associated with the copyright amendment movement for persons with  disabilities, and is one of the founding organisations for the Indian Right to Read campaign. At present, the proposed copyright amendment is detrimental to the disability sector’s needs. The exception extends only to ‘specially designed’ formats such as Braille and sign language, and does not benefit the millions who have cerebral palsy, dyslexia and low vision, and the visually-impaired persons who do not know Braille. Such persons require audio, reading material with large fonts and electronic texts, which are not ‘specially designed’ formats. For conversion to non-specialised formats, the amendment proposes a licensing system, which will permit only organisations working for the benefit of the disabled to undertake conversion and distribution. This will prevent educational institutions, SHGs, other NGOs and print-disabled individuals from undertaking conversion. The licensing system will also require approaching the Copyright Board for each work, which will be extremely time-consuming. The waiting period for obtaining permissions and subsequent conversion will result in students losing academic years, a violation of their right to education. The  proposed amendment violates the Constitutional guarantee of equality under Article 14 since it discriminates between  those visually-impaired persons who know Braille and those print-disabled persons who do not. It is important for the  nation as a whole to take the concern of persons with disabilities as a mainstream concern.

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

From DNIS: “The reason we want a new law…”

Disabled rights activists from across the country were in New Delhi for the National Consultation on ‘The Rights of Persons with Disabilities (Respect for Dignity, Effective Participation and Inclusive Opportunities) Act, 2010’, organised by N.C.P.E.D.P. The demand for a new law was unanimous.Dorodi Sharma of D.N.I.S. caught up with a few of them with the poser, “The reason I want a new law…” From vehement demands for a rights based Act to strong voices for accountability, the views were mixed but not different.

Shampa Sengupta, Sruti Disability Rights Centre, Kolkata: “The reason I want a new law is because amendments to the old will not be able to cater to the ‘diverse’ needs of persons with ‘ALL’ kinds of disabilities.”

Sameera Shamim, Talking About Reproductive and Sexual Health Issues (T.A.R.S.H.I.), New Delhi: “The present law has many loopholes and does not look into the day to day lives and problems of people with disabilities. The definition of disability is very narrow, as is the understanding of other issues vis-a-vis disability. As someone who believes completely in affirmative rights towards sexual and reproductive health of all people, the present law completely neglects this area. Also post U.N.C.R.P.D., the existing law can be thrown away.”

C. Mahesh, Community Based Rehabilitation (C.B.R.) Forum, Bengaluru: “India needs to have a new and comprehensive Act that clearly defines all the rights in the context of people with disabilities. The current law is inadequate on how inclusion, participation, and exercising legal capacity by persons with disabilities in the areas of living in the community, accessing services, education and employment can be made possible. There is also no accountability and enforcement mechanism in the old Act.”

Amitabh Mehrotra, S.P.A.R.C. India, Lucknow: “We need a new law in line with U.N.C.R.P.D. that will look into the ground realities of our vast country. The concerns of the unheard voices need to be addressed immediately. Justice needs to be done to people who are intentionally or unintentionally segregated from the mainstream.”

Arun Rao, The Deafway, New Delhi: “The new law with U.N.C.R.P.D. as a base document would put deaf issues and concerns in a position where positive progress is possible. There will be a lot to consider naturally but the retrogressive thinking in the Disability Act of 1995 will be negated. This will open up fresh approaches to the future. On another track, the old Act has made us insecure, there is also a tendency to be very narrow minded and grabby about things. I guess any oppressed community is reactive and defensive without consciously wanting to appear so. As the broad scope of the new Act sinks in, people will put down their individual agendas and apprehensions and truly embrace inclusion in the spirit in which it deserves to be talked about and engaged.”

M. Srinivasulu, Network of People with Disabilities Organisation, Hyderabad: “The present situation demands that any disability legislation needs to be on the basis of U.N.C.R.P.D. To achieve this, the old Act has to be repealed. As a grassroot activist, my opinion is that if justice is to be done to all sections of the disabled population, we need a new law and not amendments.”

Suhas Karnik, National Association for the Blind (N.A.B.), Mumbai: “It is almost 14 years since we got the old Act. Amendments were due for a long time. But with India ratifying U.N.C.R.P.D., we have a different frame of reference now and mere amendments would not work. Although the Government has started the process of amendments, the concerns of the disability sector have not been taken into consideration. The most glaring drawback of the amendments is that it does not take into account 18 Articles of U.N.C.R.P.D. There is no mention of legal capacity, accountability and punitive measures. Having more than 100 amendments makes no sense. It is time to go for a new law which is in consonance with the U.N. Convention.”

Gautam Chaudhary, Sanchar, Kolkata: “There has been a major paradigm shift towards rights based approach since 1995. U.N.C.R.P.D., which has been ratified by India, gives us an appropriate frame work from the rights perspective to the issue of disability. When the whole framework of reference has undergone a vast change, it is rather futile to try to amend the old Act. Many of the significant chapters are not taken into consideration in the present process of amendments. One simply cannot include all the aspects of U.N.C.R.P.D. in the present law in its present format and if one is talking of changing the format, one is obviously talking of a new law. I strongly feel that we have no other alternative but to have a new law.”

Rajiv Rajan, Vidyasagar, Chennai: “The old law was enacted when the sector was still following the welfare model of disability. Now we should go for a rights based law that will reflect the letter and spirit of U.N.C.R.P.D. However much we try to incorporate the provisions of the U.N.C.R.P.D. into the old law, it will just be patchwork.”

Kanchan Pamnani, a visually impaired Advocate from Mumbai summed up the general feeling about the Disability Act of 1995: “I am fed up of the charity mindset that the old law projects. I think we all are.”

“Mental illness is not a disability, it is a disease”: J.P. Gadkari

As the cry to include mental illness in the National Trust Act gets louder, organizations working with mental retardation, autism and cerebral palsy, etc. are vehemently opposing it. In an interview with Dorodi Sharma of D.N.I.S., J.P. Gadkari, President, Parivaar, the parents’ body for intellectually disabled people, gets candid on why they do not want mental illness in the National Trust Act.

D.N.I.S.: There is a huge debate in the disability sector on whether there should be four different laws on disabilities or one comprehensive law. What are your views on this?

J.P. Gadkari: A few back when a bureaucrat of the Ministry of Social Justice and Empowerment had posed a question to me as to why can’t we have a single comprehensive law dealing with all disabilities, I was somewhat taken aback by this poser. My apprehension was that under one such disability law, the persons with different categories of disabilities will be deprived of various benefits and facilities which they had won after a prolonged struggle. This apprehension was not without basis if you look at the bureaucratic attitudes displayed by those in power and administration from time to time.However, there is a paradigm change in the situation now. U.N.C.R.P.D. has also removed distinction among persons with disabilities by asserting that all persons with disabilities have legal capacity and equal rights like all other citizens. In this changed situation, there should not be any objection to a single comprehensive law with different chapters for all disabilities based on their specific needs and requirements. Also all existing facilities, concessions, etc., should be safeguarded and further improved upon in the light of the provisions of U.N.C.R.P.D.

D.N.I.S.: What do you have to say about the major debate to include mental illness in the National Trust Act?

J.P. Gadkari: We (Parivaar and myself personally) are firmly against the inclusion of mental illness in the National Trust Act. Because we believe that mental illness is NOT a disability, it is an illness or a disease. It can be treated and cured in most of the cases. It was a mistake to include it in the list of disabilities in the Disability Act of 1995. I want to emphasize here that National Trust Act is meant for persons with autism, cerebral palsy, mental retardation and multiple disabilities. These conditions are acquired from birth in most of the cases and are irreversible. It was enacted as a separate legislation for these four disabilities to fulfill their specific needs and requirements and provide permanent residential care, respite care, rehabilitation services and family support programmes. For the mentally ill there is a separate legislation – the Mental Health Act, 1987 which should not be considered as a disability legislation. It should be under the charge of the Health Ministry and the mental illness lobby can ask the Government to provide all facilities, which they require under this Act.

D.N.I.S.: There is a growing demand that people with mental illness and many other severe disabilities should also be covered under the various schemes of National Trust like Gharaunda and Niramaya. What is your take on this?

J.P. Gadkari: The severely disabled are already covered by the National Trust Act under the category of multiple disability. Other disabilities have adequate provisions under the Disability Act. As far as mental illness is concerned, I have already expressed my views.

D.N.I.S.: It is being alleged that organizations working for mental retardation, autism, cerebral palsy, etc. are putting pressure on the National Trust to not include other disabilities in general and mental illness in particular under the National Trust Act. What do you have to say on this?

J.P. Gadkari: It is patently and totally a false allegation that organizations working for mental retardation, autism, cerebral palsy etc., are putting pressure on the National Trust not to include other disabilities, mental illness, etc. under the National Trust Act. Infact, the National Trust through its website is conducting an opinion poll on these questions and everyone has a freedom of opinion to express his or her view.

Moreover, even if someone pressurizes the National Trust, they have no authority to change the law, include or exclude any of the disabilities from under their purview. That can only be done through an amendment to the present legislation by the Parliament.

D.N.I.S.: Recently, after much dithering, the Chandigarh administration has finally agreed to take care of an orphan mentally retarded girl who became pregnant after being raped at a government run shelter home. What are your views on the case?

J.P. Gadkari: It is a great victory for the entire disability sector which stood firmly by the girl. Since the crime was committed at a Government run sheltered home where the girl was staying, it was primarily the responsibility of the Chandigarh administration to take care of the victim and give her shelter, protection and all other facilities to take care of her advancing pregnancy and the forthcoming birth of the child. However, the administration wanted to wash its hands off this responsibility. It was only because of the active intervention on the part of the Disabled Rights Group (D.R.G.) and the National Federation of Parents Associations – Parivaar that the Chandigarh administration was ultimately forced to assume its responsibility.

DNIS

“Everyone who needs support should be included in the National Trust Act”: Poonam Natarajan

The National Trust for the Welfare of Persons with Autism, Cerebral Palsy,  Mental Retardation and Multiple Disabilities has been in the eye of quite a  few storms recently. From ensuring that an adamant Chandigarh administration takes onus of the mentally retarded rape victim to the debate on including mental illness in the National Trust Act. Poonam Natarajan, Chairperson, National Trust clears the air in an interview with Dorodi Sharma of D.N.I.S.

D.N.I.S.: There is a huge debate in the disability sector on whether there should be four different laws on disabilities or one comprehensive law. What are your views on this?

Poonam Natarajan: I think there should be one comprehensive law. However, from the earlier four laws, the Rehabilitation Council of India Act should be amended separately. It cannot be part of the comprehensive law, because manpower development is a separate subject. The new comprehensive law should also take a good look at all that we have achieved in the in the last 15 years and also some of the structures that are in place. For example, the Local Level Committees under the National Trust have a huge potential and they must stay. Some of the welfare schemes like pensions given by each state, insurance, etc.must be ensured to people with disabilities.

D.N.I.S.: Given the fact that there is a growing demand for one comprehensive law, doesn’t the Amendments to the National Trust Act become a futile exercise?

Poonam Natarajan: No, Amendments to the National Trust Act is not a futile exercise. Legal capacity has not yet been considered (in India). The amendments to the National Trust Act put in place legal capacity and supported decision making. The role of the Local Level Committees is also being enlarged to develop support systems for people who may need support in making choices and decisions. At present this is only for four disabilities. Perhaps, this can be expanded for all people who need such supports.

D.N.I.S.: An opinion poll has been put up on the National Trust website on whether mental illness should be included in the National Trust Act. It is being alleged that like the issue has been made into a frivolous exercise. What is your take on this?

Poonam Natarajan: Firstly, this is not a frivolous exercise. I think, it will generate discussion, debate and will get us the views of our stakeholders. Personally, I do not see anything wrong in such an opinion poll. However, we have got feedback that some people feel that it is not in good taste and we will reconsider having it on our website. In any case, an opinion poll is only an indicator, to see what the stakeholders are thinking and which way they would like us to go. It is not a final decision.

D.N.I.S.: There is a feeling in the sector that pressure from certain groups is keeping the National Trust from including mental illness in the Act. How much truth is there in this? If not, then why isn’t the National Trust including mental illness in the Act?

Poonam Natarajan: The National Trust Act cannot just include other disabilities, this will have to be done by Parliament. It is not a decision that the National Trust Board or the Chairperson can take. Yes, there are groups for and against the inclusion of mental illness. We also have requests from other groups like people living with Muscular Dystrophy and Multiple Sclerosis who would like to be included. My personal view is that everyone who needs support in decision making or a legal guardian should be included, no matter what the disability. The National Trust Act should become the Act for Legal Capacity or a similar chapter in the new law.

D.N.I.S.: The recent case of the pregnant mentally retarded girl in Chandigarh has highlighted the lack of State ownership and support systems needed for the care of intellectually disabled people. Is the National Trust working towards any policy that will ensure that such situations do not arise in the future?

Poonam Natarajan: This is a land mark case in our country. State ownership and support systems do exist, but they are lost in the earlier paradigms of protection, care and charity. This certainly needs to be changed, across the country.

The National Trust can be a facilitator and a catalyst to work towards more forward looking State Policies. This will need to be done in partnership with disability advocates. They will need to use U.N.C.R.P.D. as a tool to take this objective forward. We hope to work on these issues in the future.

DNIS