Sterilisation first option for the disabled

by Vince Chadwick
Jan. 2, 2013, 2:30 a.m.

PARENTS of women with intellectual disabilities are going straight for sterilisation procedures rather than ”existing and viable options” to help control menstruation and contraception, a national Senate inquiry has heard.  Associate Professor Sonia Grover, a gynaecologist at the Royal Children’s Hospital, told the hearing she was horrified when she received ”straight-out” requests for hysterectomies. She said increasing access to respite care, helping women manage their periods, and ensuring contraception is in place are options ”so these young women, if they are able, can enjoy a close sexual relationship without risks of pregnancy if they are not able to have a pregnancy and care for a child”.  Under Australian law, parents wishing to sterilise a child or adult children who cannot give consent for non-therapeutic reasons must apply to the Family Court or, in some states, a guardianship board.

However, Dr Grover expressed frustration with the therapeutic test. ”The question really is: Is this a procedure you would do on a non-disabled person?” she said. ”We should not be doing a sterilising procedure if we would not be doing it in somebody who did not have a disability.” The inquiry into the involuntary or coerced sterilisation of people with disabilities in Australia began in September as part of the government’s response to a series of calls from the United Nations for an end to non-therapeutic sterilisation without consent, regardless of disability.  The executive director of Women with Disabilities Australia, Carolyn Frohmader, said options such as family planning and menstrual management were not being explored because the sexuality of young women with disabilities was not widely accepted.

”Parents and other care-givers are not made aware of these or are discouraged from understanding their effectiveness,” Ms Frohmader told a recent hearing in Melbourne.  In one case from Queensland in 2010, an 11-year-old intellectually disabled girl (”Angela”) was sterilised after she began getting her period, which was heavy and irregular, at age nine. Contraceptive pills were ineffective, two gynaecologists reported she would benefit from the removal of her uterus, and a Family Court judge was satisfied less-invasive treatments had been exhausted.  ”I am not a doctor but I am the mother of a nine-year-old child and I found that case very problematic for a whole range of reasons,” Ms Frohmader said.

The inquiry has so far received just five submissions, including one from a parent explaining her wish to have her 27-year-old intellectually disabled daughter sterilised.  ”Her own life is not stable enough to support another life,” the parent wrote. ”Advocates who say she has the ‘right’ to have a child need to factor in her ability to be responsible for that child.”  The author said they had already raised three children, but at 54 did not want to raise their grandchild. ”Sterilisation of my daughter is one thing that I can ensure for her before I die, otherwise who will?”  The inquiry is receiving submissions until February 22 and is due to report on April 24.

http://www.naracoorteherald.com.au/story/1213079/sterilisation-first-option-for-the-disabled/?cs=7

A law that enables

The National Advisory Council’s suggestions for strengthening the draft law on the Rights of Persons With Disabilities (PWD) is a potentially far-reaching intervention. The step is in sync with the recent notification of a separate Department for Disabilities in the Union Ministry of Social Justice and Empowerment, which was announced in the President’s 2012 address to Parliament. Ever since India ratified the United Nations Convention on the rights of PWDs in 2007, the formulation of a comprehensive law became imperative and these two developments suggest things are finally moving ahead. Currently, there are four separate pieces of legislation pertaining to India’s disabled population.

The earliest, the 1987 Mental Health Act, predates the discourse on affirmative action for the disabled in India and, to that extent, the status of mental illness as a disability remains ambiguous. Then, there is a separate law that deals with the creation of qualified and trained personnel for the provision of rehabilitation and education services for this segment of the population. The third, the PWD Act of 1995, is underpinned by an emphasis on anti-discrimination and guarantees of equal opportunities. Although the latter was envisaged as a comprehensive law, it did not address fully the conditions of persons with other equally severe disabling conditions. Hence the 1999 Act for people with autism, cerebral palsy, mental retardation and multiple disabilities.

It is hardly surprising that these four laws in themselves have not mitigated the sense of apathy and bureaucratic red tape that hamper the creation of an enabling environment. The mechanisms and procedures involved are riddled with duplication and inconsistencies, as evidenced by the evolving case law over questions of jurisdiction and interpretation of different laws. More than a billion people around the world experience one or another form of disability, according to the World Health Organisation and World Bank 2011 report. On other estimates, about 10 per cent of the population in developing countries is disabled. By any reckoning, India’s numbers would be much larger than what governments are prepared to acknowledge, given the detrimental influences of poverty, illiteracy and poor health on disability. It follows that stepping up investments in health and education is one of the important ways of preventing disabilities and mitigating their impact over the long term.

Requiring service providers to furnish a declaration of conformity with the relevant laws is the other means to ensure accountability and effective enforcement. An umbrella legislation will go a long way in altering the present state of affairs.

The Hindu

New disability bill draws mixed response from experts, activists

As the final draft of the Rights of Persons with Disabilities Bill, 2011 was submitted to the ministry of social justice and empowerment on June 30, activists working for people with disabilities, have mixed responses about the proposed Act.

According to Bhargavi Davar, managing trustee of the city-based Bapu trust for research on mind and discourse, the bill includes a liberal definition of ‘disability’ and disability rights unlike the existing Act. However, in some ways, it is inferior to the existing one.

"The Bill lists at least 20 disabilities as illustrative of the disability experience. A significant contribution is the inclusion of a range of civil political rights, such as right to liberty, life, political participation, among others. In terms of socio economic rights, the Bill offers manifold duties of the government and new entitlements. However, the new Bill is inferior to the existing Act in the context that the existing Act do not impose a limit on legal capacity, nor does it talk about guardianship," said Davar.

The new Bill, which promises to usher in landmark clauses to promote human rights and fundamental freedoms for all Persons with Disabilities (PwDs) without discrimination, has been drafted in harmony with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). 

Among other things, the proposed law suggests setting up of a National Disability Rights Authority to formulate regulations for ‘service animal’ training facilities so as to ensure that persons with disabilities are provided suitable animals to help them.
The bill also proposes to replace the existing practice of plenary guardianship with limited guardianship, a system of joint decision-making which operates on mutual understanding and trust between the guardian and the person with disability.

The ministry of social justice and empowerment had earlier constituted a committee with members representing persons with disabilities, NGOs and experts from the disability sector, to draft a new legislation to replace the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.

According to Davar, though the draft bill gives the right to full legal capacity, the concept of limited guardianship takes that benefit away.

"With any kind of guardianship, limited or plenary, the exercise of right for a person with disability becomes all the more difficult. The clause on ‘limited guardianship’ will again push the people with disabilities back to colonial times, as vested interests will take advantage of the clause and take away rights otherwise granted in the new Bill," said Davar.

At the same time, Davar is not sure about the implementation of the bill in the state, where the basic PwDs are, in many cases, non-existent. "The state coordination committee does not meet regularly and the budgets of 3% provided for, under the Action Plan for disability spending under all government heads, has been unutilised. State budgets for social welfare in general has been unutilised, whereas there is a crying need for huge reform of social / disability sector," she said.

Sadhana Khati, project leader, Bapu Trust, said, "Granting full legal capacity includes an array of rights – from the right of marriage to the right to vote. Though the draft grants the right to legal capacity, it does not grant ‘absolute’ right to legal capacity."
A lawyer, part of the Human Rights Law Network (HRLN), a collective of lawyers and social activists dedicated to the use of the legal system to advance human rights in India and the sub-continent, said on condition of anonymity, "The proposed law should have expounded on the concept of limited guardianship, instead of giving it a minimal definition. What the act proposes to do, i.e., replace plenary guardianship with limited guardianship sounds like a gain; but the finer details on the latter have not been specified. What the new Bill should have done is describe the process by which persons with mental disabilities – in conflict with law or in need of care and protection – are identified as a class apart, ensuring a participatory process, as the one ensured by the provisions of the Juvenile Justice (Care and Protection of Children) Act."

Pune, Times of India

Experts script design principles for India

New Delhi, June 22 (IANS) A nine-member panel of experts under the aegis of the National Institute of Design (NID) has prepared guidelines to help designers and manufacturers tool their wares to suit the Indian social landscape and open wider marketing avenues.  At a media interface here Tuesday, the panel authors said the Universal Design India Principles (UDIP) are based on usability, equitability, culture, economy and aesthetics.

The UDIP have been modelled on the seven standard global design principles, keeping the Indian cultural context in mind.  According to a member of the panel, Professor Abir Mullick of Georgia Institute of Technology and a scholar in residence at the NID, "The Indian design principles were inspired by Tagore’s ideal – the problem is not how to wipe out all differences, but how to unite with the differences intact". "Our primary focus is to make design equitable and democratic so that it becomes an uniting force. Indian designs will have to ensure usability because Indians are pragmatic by nature. We don’t throw away goods if they can be used."

"Aesthetics has to be crucial to Indian design to reflect the country’s cultural heritage and designs have to be economical. It should be unique to the cultural ambience of India," Mullick told IANS.  The contemporary idea of design as we know now has come from the West. Our design has been intrinsic, our craftsmen were designers. But India is now a global economy and has to interpret traditional design in the contemporary language to make it distinctive. The country is now paying attention to the fact," Mullick said.

He said innovation was the plank on which the Indian design movement would ride.  Disability is at the forefront of the design movement in India – with specially designed products for the disabled driving the design business, Mullick said.  Citing Census 2011 statistics, he said India "has 2.19 crore people with disabilities, constituting 2.13 per cent of the total population and nearly one-third of the global population of the disabled".  "Moreover, the elderly population in the country was the second largest with high family dependency, half of which have at least one kind of dependency. Design has to be accessible to them," he said.  Other members of the UDIP authors’ panel include experts from the Indian Institutes of Technology (IITs), the NID and the School of Planning and Architecture, Bhopal.

Manglogrean.com

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

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

Differences in language circuits in the brain linked to dyslexia

Milan, Italy, May 10: Children with dyslexia often struggle with reading, writing, and spelling, despite getting an appropriate education and demonstrating intellectual ability in other areas.  New neurological research has found that these children’s difficulties with written language may be linked to structural differences within an important information highway in the brain known to play a role in oral language. The findings are published in the June 2010 issue of Elsevier’s Cortex (http://www.elsevier.com/locate/cortex).

Vanderbilt University researchers Sheryl Rimrodt and Laurie Cutting and colleagues at Johns Hopkins University and Kennedy Krieger Institute used an emerging MRI technique, called diffusion tensor imaging (DTI), to discover evidence linking dyslexia to structural differences in an important bundle of white matter in the left-hemisphere language network. White matter is made up of fibers that can be thought of as the wiring that allows communication between brain cells; the left-hemisphere language network is made up of bundles of these fibres and contains branches that extend from the back of the brain (including vision cells) to the front parts that are responsible for articulation and speech. “When you are reading, you are essentially saying things out loud in your head”, said Cutting. “If you have decreased integrity of white matter in this area, the front and back part of your brain are not talking to one another. This would affect reading, because you need both to act as a cohesive unit.”

Rimrodt and Cutting used the DTI technique to map the course of an important white matter bundle in this network and discovered that it ran through a frontal brain region known to be less well organised in the dyslexic brain. They also found that fibers in that frontal part of the tract were oriented differently in dyslexia.  Rimrodt said, “To find a convergence of MRI evidence that goes beyond identifying a region of the brain that differs in dyslexia to linking that to an identifiable structure and beginning to explore physical characteristics of the region is very exciting. It brings us a little bit closer to understanding how dyslexia happens.”  Rimrodt is assistant professor of developmental medicine and Cutting is Patricia and Rodes Hart Chair at Peabody College at Vanderbilt.  The researchers completed the work at the Kennedy Krieger Institute with their colleagues there before moving to Vanderbilt. The research was funded by the Johns Hopkins School of Medicine General Clinical Research Center, the Kennedy Krieger Institute’s Learning Disability Research Center and F.M. Kirby Research Center for Functional Brain Imaging, the National Institute for Neurological Disorders, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

DISABILITY NEWS ASIA

Dyslexics get disability quota in colleges

Starting this year, dyslexic students will be eligible for professional college seats, reserved under the disability quota.  With this, Karnataka will be one among the first two States — the other being Maharashtra which will also implement this inclusive system starting this year — to recognise dyslexia as a disability.

In its order on Monday, the Government has decided that from here on, dyslexic students will come under the category of those suffering  from “mental disability” and will be eligible to apply for the three per cent seats earmarked for people with disability in professional colleges across the State.  The order states that this new quota will be enforced from the forthcoming admission season slated to commence in June. It will be applicable to seats in engineering, medical and dental colleges allotted by the Karnataka Examinations Authority through the Common Entrance Test.

Triumphant

The Government Order, in its preamble, states that this provision has been included following a letter by K.S. Gopalan, president, Malleswaram Dyslexic Association.  A senior official from the Karnataka Examination Authority said the same facilities and statutory provisions extended to persons those suffering from mental disability will be applicable to dyslexics.

Rules

To be eligible for this quota, dyslexic students must get a medical certificate stating the nature of their learning disability from NIMHANS, All India Institute of Speech and Hearing, Mysore, or produce a certificate by a clinical psychologist (with an M. Phil degree) attested by a government doctor not below the rank of district surgeon.

Further, the rules state that these certificates will again be ratified by the Medical Board.

The Hindu

Manmohan promises disabled-friendly laws

FIGHTING FOR THEIR RIGHTS: Physically challenged persons, under the banner of the National Platform for the Rights of the Disabled and led by CPI(M) leader Brinda Karat, march on Parliament Street in New Delhi on Tuesday to press their demands. Photo: V. Sudhersan

Prime Minister Manmohan Singh on Tuesday said the government was in favour of amending the laws, if need be, to make them more disabled-friendly. He gave this assurance to a delegation of the differently-abled persons who met him in Parliament. The delegation was led by CPI (M) MP Brinda Karat.  “The Prime Minister was extremely sympathetic towards the demands of the disabled persons and said their demands were genuine,” Ms. Karat said. Dr. Singh assured the delegation of changing the laws to make them disabled-friendly, if necessary. The Prime Minister interacted with the members of the delegations and enquired about their problems. Talking to The Hindu, Ms. Karat said this was the first time that a delegation of differently-abled persons had visited Parliament House. “It was pointed out to the Parliament staff that there was only one gate (Gate no 9) in Parliament House for the physically disabled people and this was far away from the main entrance,” Ms. Karat said. The delegation also met the Union Minister for Social Justice and Empowerment Mukul Wasnik who told them that the government was finalising a new law for the disabled that would replace the existing law.

Earlier, a large number of people with different forms of disabilities marched to Parliament House to demand a better deal. Marching under the banner, ‘National Platform for the Rights of Disabled Persons,’ the people highlighted the plight of the economically and socially disadvantaged among the disabled, the poor, and the Scheduled Castes and the Scheduled Tribes. “The basic issue is that of the approach of the government and we must request you to consider our demands not as an act of charity but as fulfilment of entitlements and rights as equal citizens of India. India is a signatory to the United Nations Convention on the Rights of the persons with Disabilities which enjoins the government to ensure minimum rights and livelihood to disabled citizens,” the marchers said in a memorandum submitted to the Prime Minister. The demands include a comprehensive social security system for all persons with disabilities and their families including the Antyodaya cards, free health care for disabled persons, amendments to the Right to Education Act to make provision for disabled teachers and professional and identification of jobs for the disabled immediately with annual special recruitment drives each year.

Besides setting up a separate Ministry for disability affairs, the memorandum also sought issuance of a universally valid identity card and replacing the current Persons with Disabilities Act (1995) in consonance with the provisions of the U.N. Convention and harmonising other laws, the disabled persons also wanted proper enumeration of the persons with disabilities. The organisations that participated in the march included the Paschimbanga Rajya Pratibandhi Samaiilani, the Differently Abled Persons Welfare Federation of Thiruvananthapuram, the Karnataka Rajya Angavikalara Mattu Palakara Okkota, the Jharkhand Vikalanga Morcha, the Tamil Nadu Association for the Rights of all types of Disabled and Caregivers and the Vibhinna Prathiba Vanthula Jakkula Vedika of Andhra Pradesh.

The Hindu

Defining learning disabilities

By Miriam Geronimus

Diane Metcalf-Leggette ’13 is suing the University for refusing to grant her 100 percent extended time on exams, as The Daily Princetonian reported last week. Because she has dyslexia and attention deficit hyperactivity disorder, Metcalf-Leggette argues that the University is in violation of the Americans with Disabilities Act and the Rehabilitation Act. But this isn’t just a legal matter. Whichever way the judge rules, it may be time to reexamine how learning disabilities are addressed at Princeton.The Office of Disability Services uses a model that courts have supported at times, though it has also been disputed by leading neuropsychologists. To qualify for accommodations under this model, a student’s performance on a standardized psychometric test must be 1.5–2 standard deviations below that of the “average person” in the same age group nationally. Is this the right standard to use? By this measurement, a dyslexic student whose reading rate is as low as the 17th percentile is defined as “average.” This bar seems too low.

Neuropsychologists define a learning disability as a significant discrepancy in test scores. For example, a dyslexic person may have an IQ in the 99th percentile but a reading rate in the 21st percentile. Is this reading rate rightly viewed as “average”? Neuropsychologists note that the discrepancy faced by such a capable but dyslexic student creates a problem different from that faced by people with universally low scores. As neuropsychologist Roger Lauer describes it, it is like having a Ferrari engine but a Volkswagen transmission. Because the speeds at which a person does different mental tasks are out of synch, it is hard for neural pathways to work together. Allotting these students extra time on exams is logical, since it takes them substantially longer to read and process questions. As Supreme Court Justice Sonia Sotomayor ’76 observed in a 1997 decision in Bartlett v. New York State Board of Law Examiners, for academically oriented people, “the inability to identify and process words with ease would be crippling.” In that case, Sotomayor, who was a judge in the U.S. District Court for the Southern District of New York at the time, found for the dyslexic plaintiff, who had proven herself an excellent lawyer as an associate but was unable to pass the bar exam without accommodations she had been denied. In choosing the “average standard” — unlike many other selective schools, which use a more inclusive model — Princeton appears to be placing too much emphasis on possible spillover effects on other students (which are likely to be minimal), while undervaluing the costs to learning-disabled students. Documents that Metcalf-Leggette found during discovery suggest that ODS is worried that learning-disabled students will gain unfair advantages through accommodations. But studies show that such students underperform on tests, especially when timed.

Some may worry that students pretend to have learning disabilities to gain an unfair advantage. Research should quell this concern too. According to a June 2009 report from the National Institute for Literacy — a federal agency affiliated with the U.S. departments of Education, Health and Human Services, and Labor — the degree to which non-disabled examinees benefit from extended time on tests is negligible. Additionally, when learning-disabled students were given extra time on the SAT, their scores improved but remained lower than those of their non-disabled peers. The NIL report, which surveyed all peer-reviewed articles on learning disabilities, concluded that “extra time is not going to improve performance if an individual does not know the [course] content.” It is only fair that students with learning disabilities be allowed to demonstrate the full extent of their intelligence and knowledge of course material on exams. Time extensions are the only accommodation that has been studied extensively and shown to work, according to the NIL report. The University does give 50 percent time extensions to students whose scores fall below the average standard, including Metcalf-Leggette. But research suggests that time extensions should be individually gauged and that 100 percent time extensions should be the starting point. These are commonplace in higher education, including at other selective schools such as Harvard, Yale, Brown, Penn and the University of Michigan.

Advising learning-disabled students that the solution is to drop classes with grades heavily dependent on timed exams — as ODS has advised Metcalf-Leggette — is antithetical to Princeton’s own educational goals. If a learning-disabled student avoids such courses even though he or she could master the material, then Princeton’s rules stand in the way of that student’s education. This educational approach is inefficient, wasteful and disrespectful to hardworking, high-functioning students who have gained admission to Princeton despite the obstacles posed by learning disabilities. Princeton has distinguished itself in other areas by not being content to follow the minimal standard required by law or convention. By using a scientifically supported and more inclusive definition of learning disabilities, the University would enable more students to get the most out of their education. Through small modifications to existing accommodations, the University can extend the principles of diversity, equity, efficiency and excellence in education to students who have been admitted to Princeton, but whose success here is impeded by learning disabilities.

Miriam Geronimus is a sophomore from Ann Arbor, Mich. She can be reached at mgeronim@princeton.edu.

Correction: Due to an editing error, an earlier version of this column stated that Diane Metcalf-Leggette ’13 was diagnosed with four learning disabilities. Though her original complaint read that she had four learning disabilities, she was most recently diagnosed with only dyslexia and attention deficit hyperactivity disorder.

Published: Tuesday, April 6th, 2010

My ‘Raid de Himalaya’ experience: Deepa Malik

Deepa Malik is no stranger in the field of disability sports. A paraplegic with a strong resolve, she has won numerous accolades for her participation in various adventure sports. Whether it is swimming against the strong Yamuna current, or riding a special bike or even taking a shot at the Paralympics, she has done it all! Last October, she became the first paraplegic to participate in the toughest car rally, the ‘Raid-de-Himalaya’. In a tell-it-all with D.N.I.S., Malik shares her experience with disability and what it took to take the long and arduous Himalayan road.

Deepa Malik

I was not born with a disability. After 30 years of regular life, I became a wheelchair user due to three spinal surgeries for repeated tumors resulting into spinal cord damage and paraplegia. I could easily compare the two worlds, that of able bodied people and that of the physically challenged. I had the maturity to feel that a lot could be done in the field of disability in our country, starting from social outlook, acceptance of disabled, to their inclusion into the mainstream.  I noticed that wheelchair users mostly remained at home. I felt a need to generate motivation among them, so that they live a more wholesome life. This inspired me, and I set out on a mission called ‘ability beyond disability’ in my own little way. I had no clue what I had to do. But I felt that I had to contribute in some way or the other. Promoting outdoor sports I felt was the best possible way. And then to my horror, I found out, that I was the first paraplegic woman to join the world of sports in the Indian scenario!

Driving was another of my passion. So much so, that I often laugh that God probably misinterpreted my desire of ‘being on wheels’ and therefore made me sit on a wheelchair! I had always wanted to rally but somehow, I was made to believe that my this desire would never be fulfilled in the present life because of my disability. That only strengthened my resolve and I decided that I must take part in the world’s highest and toughest car rally ‘Raid-de-Himalaya’.

Everyone thought I had lost it. With a spine that had been cut open thrice and a bladder and bowel condition, how was I going to manage a long, strenuous, high altitude journey, in minus temperatures? The only person who stood by me was my husband. He let me follow my dream, and told me that I would have to get there on my own effort.

I started my homework. Being an army wife, my first try was with the army adventure cell. But I soon learnt that only serving army officers’ wives were allowed to participate. I kept struggling for three years until I landed at the flag off of the Desert Storm Rally in Delhi in February 2009.

I literally sat there trying to pick up contacts and telling various teams about my wish of doing a rally. Some thought I was crazy, some felt happy about my courage but it was the Pune Millennium Team that took me seriously and taught me all the skills of navigation. Through them, I learnt what were the legalities required to be on a rally and that was going to be a challenge.

I got in touch with Himalayan Motorsports Association (H.M.A.) and Federation of Motor Sports Clubs of India (F.M.S.C.I.) regarding my acceptance in the rally as a formal competitor. They needed a bit of time, as it was the first time a disabled person had approached them. But I was happy that they appreciated my love and enthusiasm for motor sports and felt positive. I just held my breath back till I saw a ray of hope when they agreed but I had to complete all the required paperwork.

The most difficult task was to get the personal accident insurance on heavy risk basis. Next up was to start looking for sponsorship and a professional to accompany me and form a team. I am extremely grateful to Maruti Suzuki and three time Raid-de-Himalaya winner, Rakesh Diwan for supporting my endeavour. My husband, too, joined me as an attendant.

After a long struggle for permissions, sponsorships, a rally vehicle, a professional team partner and procurement of snow clothing, I found myself in Shimla. Initially people thought I was there to cheer a friend but the moment I got my name stickers on the car and a competitor’s license and an identity card on my neck, everyone took me seriously. I was very happy to see the surprised look on everyone’s face! It was a moment of achievement, a sense of satisfaction to be able to turn a dream into a reality and to prove to the world that disability is a state of mind and not of the body.

We were flagged off on the morning of October 7. It was a harsh 8 day, 1700 k.m. drive in minus degree temperatures. Even on an altitude of 18000 feet with oxygen shortage, I was able to sustain it all. It was tiring but the adrenaline rush was so high that I never felt tired. During the rally, we were in third position in the adventure category until an unfortunate accident happened.

The car ahead of us braked suddenly and our car skidded and hit the snowy road. The radiator developed a crack and the rest of the journey was completed filling up water every few k.m.s. That made our journey even more challenging and longer in terms of time. But on the whole, the experience was amazing. And I was awarded the TRUE GRIT TROPHY for outstanding courage.

More than the trophy, what made me happy was the declaration by H.M.A. official, Manjeev Bhalla that henceforth disabled persons will also be eligible to compete in the rally. I was thrilled that my efforts opened doors for people with disabilities to the world of motor sports.

Sometimes we take it for granted that a particular thing or activity is not meant for disabled people. Society then reinforces that belief. It happened to me as well when I decided to go for motor biking. But once I was determined, I did not only get a special bike designed but also made it on record time.

I feel that it is important for one to think beyond the stereotype and follow your heart.

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.”

From DNIS: “No to Amendments,” is the writing on the wall!

While the Ministry of Social Justice and Empowerment continues to take an ostrich like attitude and push for Amendments to the Disability Act 1995, disabled rights activists from across the country were in Delhi on October 29 and 30 at 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., to take their demand for a fresh new law forward. Dorodi Sharma of D.N.I.S. takes a look at it.

Amendments to the Disability Act of 1995 have become like an urban legend in the disability sector. And why not? After all, from Maneka Gandhi to Meira Kumar to now Mukul Wasnik, amendments to the Act seem to be their favourite task. Although, the Ministry of Social Justice and Empowerment (M.S.J.E.) is all gung-ho about the amendments, for the disability sector it has come a tad too late – so late that it is time for a fresh new Act.

The Disability Act of 1995 came at a time when the rights based movement in India was at a nascent stage. Thus, it was like manna from heaven for a sector which till then had been neglected and segregated. However, 14 years since then, the paradigm has shifted considerably, more so with India ratifying the United Nations Convention on the Rights of Persons with Disabilities (U.N.C.R.P.D.). Popular sentiment in the disability sector is that any amendments to the old Act will merely be cosmetic and mostly a patchwork.

Disabled Rights Group (D.R.G.) had formed a Core Group which took up the task of drafting a new law. A delegation met with Mukul Wasnik giving him a detailed representation on how the proposed amendments left out several provisions of U.N.C.R.P.D. There is an infectious excitement throughout the sector regarding a new law. So much so, that the D.R.G. Core Group even thought of a new name!

With a view to broadbase this discussion, National Centre for Promotion of Employment for Disabled People (N.C.P.E.D.P.) organised a National Consultation on ‘The Rights of Persons with Disabilities (Respect for Dignity, Effective Participation and Inclusive Opportunities) Act, 2010’ in New Delhi on October 29 and 30. The top notch and most respected disabled rights activists from across the country were there. The Consultation was divided into different sessions over 2 days. The topics for discussion included ‘New Law and not Amendments’, ‘Definition of Disability’, ‘Legal Capacity’, ‘Accountability’ and ‘One Law and not Four Laws’. All the leaders and activists present unanimously agreed that the Disability Act of 1995 was archaic and had served its time.

What was interesting to see was that the issue attracted instant support from most mainstream, national level political parties. Prakash Karat, General Secretary of C.P.I. (M) and L.K. Advani of B.J.P. personally wrote to N.C.P.E.D.P. and nominated senior members from their parties to attend the Consultation. “Let me assure you that C.P.I. (M) is committed to the rights of people with disabilities. It would not be content with mere expression of solidarity or support. We will very much be part of your movement,” said Muralidharan, member of C.P.I. (M) at the Consultation.

“The 1995 Act was inadequate even when it was enacted. Today, in a changed circumstance, amendments by themselves even if aimed at overhauling the Act would not suffice. Only a fresh law replacing the 1995 Act would satisfy,” he stated categorically.

Najma Heptullah, Member of the Rajya Sabha from B.J.P. promised support on behalf of her party. She is the Chairperson of the Subordinate Legislation Committee and promised that she would also look into the lack of implementation of the Disability Act of 1995. She gave an assurance at the Consultation that she would personally take this issue up with Mukul Wasnik. Incidentally, Heptullah was the Deputy Chairperson of the Rajya Sabha when the Disability Act of 1995 was passed.

M.S.J.E. also seemed to be feeling the heat. Javed Abidi. Honorary Director, N.C.P.E.D.P. personally met Mukul Wasnik on October 22, who assured him that Ministry officials would be present at the Consultation. And sure enough Dr. Arbind Prasad, Joint Secretary and Nidhi Khare, Director, M.S.J.E. attended the Consultation on the first day. Dr. Prasad said that the Ministry was open to “suggestions”.

Although officials from M.S.J.E. seemed cagey about the whole issue, officials from the Prime Minister’s Office (P.M.O.) seemed to be more than willing to listen. Sanjay Mitra, Joint Secretary and Rajeev Topno, Deputy Secretary at P.M.O. answered queries from disabled activists ranging from the non – implementation of the XIth Five Year Plan to the question of a new law. Mitra said that disability was an issue close to the Prime Minister’s heart. He advised the sector to be resilient in their demand.

The discussions on both the days saw some exciting views come up. While the definition of disability was most debated, it was finally settled that the current definition envisaged in the draft Disability Act 2010 would be circulated and debated upon at a larger level to reach a consensus. Legal capacity and accountability were also discussed at length. Implementation of the law in general and accountability on part of both, government and the private sector in particular were a major concern at the Consultation.

“It is unfortunate that in this country a person can be penalized for cutting down a tree or for jumping a traffic light but there are no punitive measures to ensure that the rights of disabled people are judiciously implemented and that they are not exploited and abused,” said Abidi.

Praveen Kumar and Victor Cordeiro spoke at length about the need to take the grassroots level disabled population into consideration and ensure that the law is implemented properly. Another topic which saw a much heated argument was the issue of having one consolidated law rather than four different laws on disability. The leadership seemed to be clearly divided on the issue. Even though the merits of having an umbrella law were articulately placed by the speakers, the jury on this one is still out.

It became very clear by the end of the Consultation that there can be no two ways on the sector’s stand on amendments. However much the Ministry tries to play with semantics, the writing on the wall is loud and clear: “No to Amendments and Yes to New Law.” The leadership who attended the Consultation vouched to carry this cry to the length and breadth of India. N.C.P.E.D.P. is planning to follow this National Consultation with four Zonal Consultations, sometime around January next year. In the meantime, the drafting process of the Disability Act 2010 by the D.R.G. Core Group in New Delhi is expected to be over by December. This draft would be widely circulated and discussed in the sector and the final draft would then be submitted to the government.

The Indian disability sector has always been accused of being reactive. But this time around, they have decided to take control of things and play a strongly proactive role. If the Ministry officials have a quarter of pragmatism and intelligence they credit themselves with, they would surely see a golden opportunity to set an example by joining hands with the disability movement, rather than fight with them or mock at them. An example of Government – N.G.O. ‘partnership’. An example that probably will take the meaning of democracy to a new and higher level.

From DNIS

From DNIS: M.S.J.E. continues to drag its feet on web access

News Network: More than half a year has passed by since the Ministry of Information Technology revised the web access guidelines mandating all websites in public domain to be W.C.A.G. 2.0 compliant. But Ministry of Social Justice and Empowerment (M.S.J.E.), the nodal ministry for disability and the national institutes and bodies under it are seemingly competing against each other to be the last to wake up to web accessibility!  D.N.I.S. has been following this story for months now. Despite, several letters and phone calls, only the National Trust and the Ministry of Social Justice and Empowerment had found it necessary to reply!  Dr. Vinod Aggarwal, Joint Secretary, M.S.J.E. told D.N.I.S. that the new, W.C.A.G. 2.0 compliant website of the Ministry is ready and would be unveiled anytime soon. According to sources, the last minute security tests are being conducted now. It was earlier scheduled to be launched in mid September. Poonam Natarajan, Chairperson, National Trust said that their W.C.A.G. 2.0 compliant website was to be released in mid September as well. However, when contacted a month later, National Trust said that they have been in touch with N.I.C. and hopefully the website would be fully accessible by October end.

The Rehabilitation Council of India, on the other hand, washed its hands off the issue by asking Media Lab Asia to respond to D.N.I.S. That was in the first week of September. A month and a half later, neither S.N. Goswami, Managing Director and CEO, Media Lab Asia nor Dr. J.P. Singh, Member Secretary, R.C.I. found the time to either come on the phone or reply to E-mails and letters.  But the winner obviously is the National Institute for the Visually Handicapped and a sure shot entry into Ripley’s Believe it or Not! The institute meant for people with visual impairment, who obviously will benefit the most from accessible websites, is not W.C.A.G. 2.0 compliant!

“We have been trying to get our website W.C.A.G. 2.0 compliant for the last 2 years now. But there are no experts on web accessibility in the country and that is why we have not been able to do so,” said Anuradha Mohit, Director, N.I.V.H. A statement that is extremely hard to believe! After all, a good number of government websites are on the verge of becoming W.C.A.G. 2.0 compliant. How come they did not have any difficulty in finding ‘experts’?  Dr. Arbind Prasad, Joint Secretary, M.S.J.E. had earlier directed all national institutes under M.S.J.E. to get their websites W.C.A.G. 2.0 compliant. According to sources, the Ministry is now tightening its reins. However, while most national institutes are scurrying to get their act together, N.I.V.H. apparently is the only one which has not responded. “We do not have to respond, we only have to act,” said Mohit when asked. “And we have been working on it for quite some time,” she added. And how many more months or perhaps years is it going to take to ‘act’? Well, your guess is as good as ours!

DNIS

“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

The ‘lesser’ among the less privileged

Mental illness in India has a huge taboo, ignorance and terrifying superstitions attached to it. The memory of Erwadi, where 27 women with mental illness were charred to death as they were chained to their beds while the building they were in caught fire is long forgotten. While the fate of mentally ill people continues to be dismal, Dorodi Sharma of D.N.I.S. takes a hard look at the debate raging in the Indian disability sector whether or not mental illness should be included in the National Trust Act.

The Indian disability sector has many things to be proud of. Like the paradigm shift from charity and welfare mindset to a rights based attitude towards disability. Or the shift from the medical model of disability towards the social model. Even the whole mantra of inclusion, for that matter. But despite these evident paradigm shifts, there still are many things that we cannot be proud of. The condition of people with mental illness for example. Or the segregation that they still face. And segregation not only from the rest of the society but also from the so called champions of ‘inclusion’ within the disability sector!

If one goes by statistics, at any given point of time, around 5 percent of the country’s population is afflicted with mental illnesses. The change to a rights based outlook also brought about rights based legislations. While people with physical disabilities got the Disability Act of 1995 and those with autism, mental retardation, cerebral palsy and multiple disabilities got the National Trust Act of 1999, people with mental illness continue to remain ‘invisible’.

There is a huge stigma attached to mental illness in the society. The fact that a person has mental illness not only makes him or her an outcast in the society but also ostracises his/her entire family. While the Disability Act ensures job reservations for people with physical disabilities, people with mental illness run the risk of losing whatever employment they may have if their condition becomes known!

From small towns to metros, how many of us have seen mentally ill men and women roaming the streets and obviously vulnerable to exploitation? How many of us have read about people with mental illness being locked up like animals? Despite the undisputable fact that it leads to such obvious ‘handicaps’, this is what President, Parivaar, J.P. Gadkari had to say. “Mental illness is not a disability; it is an illness, a disease. It was a mistake to include it in the Disability Act!”

However, mental health activists strongly differ from this point of view.

“If you compare autism, cerebral palsy and treatment resistant mental illness, they all fall in the same category and need guardianship,” said Akhila Charagi of Nodal Association for Mentally Ill (N.A.M.I.). Gadkari feels that people with mental illness already have the Mental Health Act of 1987. In doing so, he neglects the fact that this Act is a medical one and not a rights based one.

While the National Trust provides guardianship and supported decision making structures, there is no legislation or statutory body at present that provides this to people with mental illness.

“Where do mentally ill people who are thrown into the streets – women, elderly, men included, go?” questioned Charagi. “Is anyone trying to understand the enormity of the problem?” she added.

So, why is there such a resistance to including mental illness in the National Trust Act?

“It is probably because the leadership of the intellectual disability sector is feeling threatened and believe that it will reduce their cause,” said Charagi.

Or, is it because of the Rs. 100 crore corpus fund of the National Trust that a few already in control do not want to share? If so, then all the paradigm shifts that the so called disability sector leaders do not tire of crediting themselves with, will come to a naught. If so, then the sector will be pushed back another 20 years, when cross disability was unheard of and each disability would look at the other as a possible competitor for grants and money. And if so, then it would be nothing short of a travesty.

In the last few months, the demand to include mental illness in the National Trust Act has become louder. Along with this, the pressure on National Trust to not include mental illness is also increasing. The National Trust has more than 800 N.G.O.s registered under it and all with voting rights. Apparently, these organizations are pulling the strings real hard, especially with the elections to the Board being in process! Although organizations working for mental retardation, autism, cerebral palsy, etc., vehemently refute this allegation, popular feeling in the sector seems to be telling a different story.

Disability sector leaders opposing the inclusion are now engaged in futile academic delusions and discourses which serve no other purpose but fill reams of papers with tongue twisting words and irrelevant information. And while the debate rages on, the National Trust has put up an opinion poll on its website with the question “Should National Trust Act include mental illness?” This has left people fuming.

“Is this a cruel joke or is it supposed to be a participatory exercise? It is a discriminatory question. It is against the spirit of U.N.C.R.P.D. National Trust is not an insensitive television channel. Fate of people with mental illness has to be a considered legal and policy decision and not the outcome of some public voting,” said Dr. Achal Bhagat, Director, Sarthak, in a strongly worded letter to Poonam Natarajan, Chairperson, National Trust.

Will the National Trust not include mental illness under its Amendments if there are 101 votes opposing inclusion against 100 votes advocating for it? And what about engineered votes? While the jury is still out, it is time for the disability sector to introspect. We lament the lack of inclusion in our society but have we risen above our own inherent prejudices? We talk about U.N.C.R.P.D. and jargons like ‘inclusion’, ‘social model’, etc., but have we ourselves moved beyond ‘We, the hearing impaired’, ‘We, the visually impaired’, and so on to ‘We, the disabled people of India’?

We want to be safely cocooned in our own bubbles, afraid that the other would take away our share of the pie. Isn’t it time for us to demand that the ‘pie’ be made bigger?

Yes, indeed it is time. Time to rethink, time to be less hypocritical and time to practice what we preach. After all, the only place a myopic vision will take us is a place the sector has been through decades ago. And a place no one wants to be now!

DNIS

HC Raps Govt. on Disability ACT

DNA, Bombay Feb 2, 2006

The Bombay High Court on Wednesday expressed displeasure at the slow progress in the filling up of posts disabled people and constructing of ramps