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

Student Forum Reclaims Radical Disability Studies

By Miriam Berger, Assistant Features Editor

At a University where classes such as “Gender in a Transnational Perspective” and “Ethnographic Approaches to Queer Studies” have moved towards the mainstream, Allegra Stout ’12 nevertheless felt that something was missing.  “I’ve been interested in disability studies for a long time,” Stout said. “A lot of classes have disability as a side note, but I wanted a more focused way to look at it.”  Disability studies—an inter-disciplinary field that approaches disability as a key aspect of human experience and identity with important political, social and economic implications—will now be redeemed from its sidebar status in a new student forum led by Stout, as well as Ariel Schwartz ’12, and Meredith Holmes ’10, that meets Thursdays from 1:10 p.m. to 4 p.m.  “We are going to look at disabilities the way that everyone looks at race and gender,” Stout said. “The forum will study people with disabilities as a marginalized oppressed group and seek to create social theories about that experience.”  The Americans with Disabilities Act (ADA) of 1990 defines a disability as a “physical or mental impairment that substantially limits one or more of the major life activities of such individual.”  Under the ADA, Americans with disabilities are afforded similar protections against discrimination as the Civil Rights Acts of 1964.  According to Schwartz, disability studies have developed over the last few decades as a more theoretical approach to embodiment and the experience of having a disability.  “When you volunteer for the special Olympics, it’s not the same as looking at the issue from a social science, oppression based way,” Schwartz said.

The discussion-based forum, which requires about sixty to eighty pages of reading a week, is intentionally flexible to accommodate different learning styles and creative pursuits. Each of the eight participants is required to lead one class, submit several papers, and complete a final project.  One component of the discipline is the social model theory of disability.  “The idea is that instead of the traditional medical view of disability in which there is something internally wrong with a person, the social model locates a person in the interaction between him or herself and a society that isn’t set up for them,” Schwartz said. “It’s not that your leg is broken, but that society is disabling you.”  “Crip theory,” another element of disability studies, was developed in connection with queer theory and addresses the oppressive normalizing forces of society that shape the experience of disabled embodiment.  According to Sheila Mullens, Visiting Instructor in American Sign Language, this forum is part of a wider academic movement.  “There is such a need in advocacy, law, and education for an approach like this,” said Mullens, who incorporates lessons on deaf issues into her second year sign language course. “I think that this is a wonderful beginning. It is an important part of the community.”  Across the country, institutions such as Teachers College of Columbia University, University of California at Berkeley, and Temple University, have all instituted disabilities studies programs on both the undergraduate and graduate level.

Schwartz urged Wesleyan to consider taking a similar path.  “There are a lot of classes that deal with disabilities tangentially,” Schwartz said, noting in particular American Sign Language, Psychotherapy Pathology, Ethics of Embodiment, and the Psychology of Gender. “I easily counted 10 classes that could fit under a disability class course structure.”  Stout has a similar aspiration.  “In the same way that a few decades ago women studies and female, gender, and sexuality studies (FGSS) didn’t exist, disability studies are a new, rapidly growing discipline.” Stout said. “I hope that this student forum will lead to interest in more professors and classes specializing in this field.”  Such was the case for Emily Wenzel ’10, who had no prior exposure to these theories before hearing from Holmes about the forum.  “I think that it’s interesting to look at, or attempt to look at, these experiences through someone else’s perceptive who deals with these considerations everyday,” Wenzel said.  Wenzel, whose brother was disabled in an accident, found the open environment of the forum ideal for discussing topics, such as the appropriate terms to use for identification, often hesitantly approached in other courses. For Crystal Abbott ’10 this forum provided the opportunity to build upon previous activism.

“I’ve been involved in the autistic community for some time,” said Abbott, who is autistic. “Disability activism is something that I intend to be involved with all of my life. I see this forum as a resource for me to get a deeper academic knowledge about disability activism and history.”  Stout originally presented the idea for the forum during a meeting of Wesleyan Students for Disabilities Rights, a group that she founded last fall as a freshman. Stout, Schwartz, and Holmes all attributed their interest in this field to personal influences, such as the experience of a family member with a disability or positive volunteer encounters.  Stout, however, stressed that disability studies is not an all-encompassing term.  “Disability studies does not include everything that deals with disabilities,” Stout said. “It is opposed to some approaches to disabilities, such as organizations, medical practices, and charities that evoke pity.”  She echoed Schwartz’s sentiments that volunteering should not merely be about the volunteer helping the person with disabilities, but rather should accentuate the strengths of both parties in order for each individual to gain from the perspective of the other.

While the forum’s facilitators lauded the University’s attempts to increase the accessibility of campus, such as the recent wheel chair ramp installed at 200 Church, they noted that a wider campus awareness of these issues is still needed.  “Accessibility isn’t just about ramps,” Schwartz said. “It’s about lighting, about the way people teach, and a million other everyday things.”

Wesleyan Students for Disability Rights meets on Mondays at 8:30 p.m. in Usdan 114. Students can contact Allegra Stout (astout@wesleyan.edu) for more information on the forum or about the group’s campus work.

“Persons with mental disabilities should not be deprived of their human rights” says Commissioner Hammarberg

[21/09/09]   Individuals with mental health or intellectual disabilities have been discriminated, stigmatised and repressed even in recent years. Their mere existence has been seen as a problem and they have sometimes been hidden away in remote institutions or in the backrooms of family homes. They have been treated as non-persons whose decisions are meaningless. Though much of this has changed with the progress of the human rights cause, persons with mental health or intellectual disabilities do still face problems relating to their right to take decisions for themselves, also in important matters. Their legal capacity is restricted or deprived completely, and they are placed under the guardianship of someone else who is entitled to take all decisions on their behalf.  Some persons with mental health or intellectual disabilities may have objective problems in representing themselves to authorities, banks, landlords and other such institutions – as a consequence of their actual or perceived impairments. They may also be manipulated to make decisions which they would otherwise not make.

A basic principle of human rights is that the agreed norms apply to every human being, without distinction. However, the international human rights norms have been denied to persons with disabilities. It was this failure which prompted member States of the United Nations to adopt the Convention on the Rights of Persons with Disabilities, which emphasises that people with all types of disabilities are entitled to the full range of human rights on an equal basis with others.  The aim is to promote their inclusion and full participation in society. When we deprive some individuals of their right to represent themselves we contradict these standards.  How then should the concrete situations be handled?

• The UN Convention addresses this issue in its article 12 which starts by stating that governments shall “recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life”.
• The Convention recognises the reality that some people because of their impairments or external barriers are unable by themselves to take important decisions. For them the Convention requests governments to provide access to support they may require in exercising their legal capacity.
• The nature of this support is a crucial aspect. Supported decision-making is a developing field in some Council of Europe member States, and the practice has been embedded for several years in many Canadian provincial laws. What happens in those jurisdictions is that a network of supporters are recognised – but not imposed on the adult – and these supporters provide information and options for the adult to make a decision.
• The Convention states that there should be appropriate and effective safeguards in order to prevent abuse. The rights, will and preferences of the concerned person should be respected and there should be no conflict of interest and undue influence between those supporting the adult, and the adult him- or herself.
• Further, the arrangement for the support should apply for the shortest time possible and be subject to regular review by a competent, independent and impartial authority or judicial body.

These formulations allow for a range of alternatives to guardianship to be provided for adults with disabilities. The starting point for the reforms is full legal capacity combined with the right of the individual to seek support. The exercise of this support should always be regulated with safeguards to avoid that the trust be misused.  This is different from the actual practice in a majority of countries, including in Europe, where there has been a tendency to declare almost routinely people with mental health and intellectual disabilities legally incapable and put them under legal guardianship.

However, the UN Convention – as well as the Council of Europe 2006-2015 Action Plan to promote the rights and full participation of people with disabilities in society – may have had a positive effect in some countries. A European Union high-level group on the implementation of the Convention reported recently that it had got assurances about a review process on this issue from the Czech Republic, France, Hungary, Ireland, Latvia, Portugal and Slovakia.1

The report also referred to the fact that these countries and others “had all expressed an interest in sharing information by organising conferences, expert working groups and seminars on the topic, involving civil society and all relevant players, including the judiciary, and discussing legal terms with a view to developing legislation, policy and practice in this area”.

Such discussions are necessary in order to make real the shift of laws and policies which were agreed in principle when the UN Convention and the Council of Europe Action Plan were drafted and agreed. Obviously, the case law of the Strasbourg Court will be studied in detail during this process, and more litigation before that Court is needed in order to better integrate the UN Convention’s approach into the European jurisprudence.  In a case last year (Shtukaturov v. Russia) the Court had to deal with deprivation of legal capacity; enforced hospitalisation and treatment without consent. Mr Shtukaturov, an adult who was diagnosed with schizophrenia, had been declared of his legal capacity in a decision made without his knowledge at the request of his mother, who had become his guardian. He was legally prohibited from challenging the decision in Russian courts and had subsequently been detained in a psychiatric hospital.  After reviewing his case, the European Court of Human Rights stated that “the existence of a mental disorder, even a serious one, cannot be the sole reason to justify full incapacitation”. The Court stated that domestic legislation must provide for a “tailor–made response”. The Court found that the decision-making process depriving him of his legal capacity constituted a disproportionate interference with his private life, and found various violations of the European Convention on Human Rights.2

This judgment must be interpreted to promote an approach in line with the UN Convention. Any restrictions of the rights of the individual must be tailor-made to the individual’s needs, be genuinely justified and be the result of rights-based procedures and combined with effective safeguards.  Interestingly, the UN Convention underlines the particular importance of protecting the right of persons with disabilities to own property, control their own financial affairs and to have equal access to bank loans and mortgages.3 This appears to be based on the experience that decisions on incapacitation in this area have been taken against the spirit of human rights.  I would like to add that persons with mental health and intellectual disabilities should have the right to vote in elections and stand for election. Though this is stated clearly in the UN Convention (Article 29), individuals in a number of European countries are excluded. Being deprived or restricted of their legal capacity they have been denied these rights as well. This has further exacerbated their political invisibility.  We should remember that there is a great difference between taking away the right to take decisions about one’s life and to provide “access to support”. The first views people with disabilities as objects of treatment, charity and fear. The second places the person with disabilities at the centre of decision-making and views them as subjects entitled to the full range of human rights.

Thomas Hammarberg

——————————————–
Notes:

1. . Information note to accompany the second Disability High Level Group Report on the UN Convention (2009). 4 June 2009, p. 5.
2. . Shtukaturov v. Russia, 27 March 2008. Also see the pending case of D.D. v. Lithuania (Application No. 13469/06) lodged on 28 March 2006. The statement of facts was published on the Court’s Website on 10 December 2007.
3. This is spelled out in the fifth and last paragraph of Article 12 of the UN Convention. Note also in this regard the case Winterwerp v. the Netherlands in which the European Court ruled that the capacity to deal with one’s property is a “civil right” and protected by the European Convention.

Links:

• The Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (“Convention on Human Rights and Biomedicine”) of 4 April 1997
• Recommendation (99) 4 of the Committee of Ministers to member States on principles concerning the legal protection of incapable adults.
• Recommendation (2004) 10 of the Committee of Ministers to member States concerning the protection of the human rights and dignity of persons with mental disorder.
• Recommendation (2009) 3 of the Committee of Ministers to member States on monitoring the protection of human rights and dignity of persons with mental disorder.
• The compendium of the 27 Viewpoints written by the Commissioner during his second year in office is available in electronic version.

Commissioner of Human Rights Europe

Auditors hit at ‘unacceptable’ use of money at Equalities and Human Rights Commission

• Concern at £311,000 of fees spent on former staff

• One more commissioner expected to leave soon

The National Audit Office will tomorrow publish details of “unacceptable” use of public money at the Equalities and Human Rights Commission, worsening the sense of crisis at the organisation, which saw two new high-level resignations over the weekend.  Three commissioners have resigned from the EHRC’s 16-member board in the past three days, making a total of five commissioners to walk out in recent months; all three cited problems with the body’s leadership among their reasons for their departure. At least one more commissioner is expected to leave in the next few days. The critical findings of the National Audit Office will focus renewed scrutiny on the management of the EHRC by its chair, Trevor Phillips, according to a senior source at the organisation who has seen the findings.  Explaining why they have refused to approve the EHRC’s accounts, auditors will highlight a sum of £311,000 that was paid out in consultancy fees to a number of staff members after they had taken redundancy packages from the Commission for Racial Equality.

The terms of their redundancy payments made it clear that they could not then continue to work for the new government-funded rights watchdog, which was set up in 2007 to replace the CRE, the Equal Opportunities Commission, and the Disability Rights Commission. But four former CRE staff members shared consultancy payments worth £273,819 over a six-month period, despite having already received pay-offs, the NAO will say.  The NAO report, which will be presented to parliament tomorrow, will describe these payments as an “unacceptable” use of public money. It will also criticise the government for failing to supervise adequately the EHRC’s creation.  The unease about these payments and other management issues has created an unhappy atmosphere within the EHRC, and has contributed to the string of high-level departures, the source at the EHRC said, adding: “If you don’t have good governance from the top then you can’t expect staff further down to behave in the exemplary way that you would expect of a body that was set up to promote good practice.”  There was dissent within the government equalities office over the decision to reappoint Phillips last week, with junior officials raising concerns about whether the organisation represented value for money, with its £70m annual budget.

Two days later, the respected disability campaigner Lady Jane Campbell resigned. She was understood to be unhappy at Phillips’s reappointment although she made no public statement. Prof Francesca Klug, a human rights academic, and Sir Bert Massie, another leading disability rights campaigner, resigned on Saturday.  In his resignation letter to Harriet Harman, the minister for equalities, Massie said he had long been concerned about “corporate governance” at the EHRC, adding: “The chairman’s conduct in various ways has damaged the commission’s external reputation.”  In her resignation letter, Klug mentions “problems of leadership and governance”, without mentioning any names.  Ben Summerskill, chief executive of the gay rights group Stonewall, is also understood to be considering his position.  A spokesman for the EHRC said no comment could be made on the NAO’s findings until they are published tomorrow. However, sources acknowledged that mistakes had been made as officials attempted to ensure that the new organisation was set up on time and correct procedures had inadvertently not been followed to secure permission for consultancy work to be given to staff members who had been already paid off.  On the issue of ongoing resignations, the spokesman said: “We have done a lot of things of substance over the past six months and that is what we want to be judged on.”  Trevor Phillips was not available for comment.

The Guardian