disabilities

Take ‘Extraordinary Steps’ Aimed at Data Creation: CIC Tells Social Justice Ministry

The ministry’s website should be a centralised resource centre from where members of the public can access all necessary information related to persons with disabilities, the commission said.

New Delhi: The Central Information Commission has directed the Ministry of Social Justice and Empowerment to “take certain extraordinary steps aimed at data creation” and to make its website a centralised resource centre from where members of the public may be able to access all necessary information. It has also asked the chief public information officer (CPIO) of the ministry to put the issue before the “competent authority” to ensure that such data is also updated on a month-to-month basis.

The order from central information commissioner Saroj Punhani, passed on May 31, came on an appeal filed with the commission by L. Muruganantham, who had sought information on 15 broad points from the ministry in March 2019 on issues pertaining to persons with disabilities (PwDs). Not happy with the CPIO’s reply and the First Appellate Authority’s upholding of that reply, he approached the Commission with his second appeal.

During the hearing, Muruganantham said he was not satisfied with the CPIO’s claim that no separate census data is maintained for the categories of information mentioned in his RTI application related to PwDs.

He pointed out that the Supreme Court had in the case of People’s Union for Civil Liberties vs Union of India and Another (1997), held that the Ministry Of Social Justice And Empowerment, Department Of Empowerment of Persons with Disabilities of Government of India and its PIOs have the constitutional and statutory obligation to maintain all the information sought in the RTI application along with other information and also provide information in all the modes and means of commutation for PwDs.

Ministry said UDID would create a national database for PwDs

The CPIO of the ministry submitted that based on the availability of records at the time, the appellant was provided category wise and state wise data regarding PwDs. He further submitted that the process of incorporating the segregated data on autism and specific learning disabilities was ongoing as a part of the “Unique Disability ID” or “UDID” initiative.

He said this initiative was being implemented with the view to create a national database for PwDs and to issue a Unique Disability Identity Card to each PwD. Further, the CPIO said whatever statistics were made available by various states at the relevant time had been provided to the appellant.

‘Data for UDID accessible only to select officials’

To a query from the Commission regarding the availability of this segregated data on the ministry’s website, the CPIO submitted that since the data collected for the UDID was extremely dynamic, at present it can be only accessed by specific public officials who have the right of access to the ministry’s portal.

However, in response to a suggestion from the Commission, the CPIO conceded that a monthly update on the data can be made available for access to the general public. Further, the CPIO said that data on crimes/offences, education, marital status and other information related to PwDs sought in the application was not maintained by the ministry. For these points, the RTI application was transferred to the public authorities concerned, the CPIO said.

In its order, the Commission observed that Muruganantham’s case was “extensively reflective of the larger public interest of the persons with disabilities and his particular reference to the Article 31 of United Nations Convention on the Rights of Persons with Disabilities succinctly captures the essence of the information sought for in the instant RTI application”.

Commissioner Punhani also marked a copy of the order to the secretary, Ministry of Social Justice and Empowerment, to expeditiously look into the serious concerns raised by the appellant and take note of the Commission’s advisory.

It asked the ministry to provide the information directed by the Commission to the appellant free of cost, within 45 days from the date of receipt of the order.

Without the Right Tools, Students With Disabilities Struggle in Online Classes: Activists

A letter by an advocacy group to the Ministry of Social Justice says students with visual, hearing and learning disabilities are suffering during the lockdown.

New Delhi: While online classes are being conducted by many universities and academic institutions in the wake of the COVID-19 lockdown, the Javed Abidi Foundation has highlighted how these remain largely inaccessible to students with disabilities.

The Foundation has pointed out that 74,435 students with disabilities enrolled in universities across the country are not being able to attend these classes due to the lack of guidelines and absence of tools to facilitate students with visual, hearing or specific learning disabilities.

The Foundation said soon after the lockdown began on March 24, it held consultations to understand the specific needs of people with disabilities. Then on April 25, its convener Shameer Rishad wrote to the State Commissioner for Persons with Disabilities in the Ministry of Social Justice and Empowerment (MSJE) regarding the inaccessibility of online classes.

Set up in 2019 as a tribute to late disability rights activist Javed Abidi, the Foundation said it highlighted how several students with disabilities had pointed out the difficulties being faced by them in accessing online education during the lockdown.

It said students, particularly those with visual disabilities, were not able to access the study materials and the classes. “Some who were able to partially access classes said that it was only because they had help from their family. This was because assignments were sent to the students as scanned images. This could be a concern for people with learning disabilities as well who have difficulty reading.”

Furthermore, it added that “deaf students didn’t have access to the online classes itself as there was no sign language interpreter during the video calls. These students had also not been provided with transcripts. Most students were relying on notes which in some cases would take longer than a week to be collated and sent.”

Another major concern it highlighted was that many students did not have laptops, assistive technologies or internet access – all essential tools for accessing online education.

Ministry urged to ensure examination schedule, social distancing were not discriminatory

The JAF letter had also referred to how the examination schedule may discriminate further against students with disabilities.

It noted that “when students with disabilities do not have access to the study material or many of them do not even have access to the electronic devices to access the online classes, how will the students prepare for their examination?” It urged that the universities be asked to keep these challenges in mind while releasing the amended date sheets for examinations.

Also read: World Leaders, Experts Sign Unprecedented Letter Urging Govts to Back Free COVID Vaccine, Treatments

The Foundation had also highlighted that while social distancing appears to be one of the main solutions to control the spread of COVID-19, “persons with certain disabilities cannot follow this standard operating procedure as they require assistance from caregivers on a day to day basis”. It therefore demanded that those with disabilities not be subjected to any kind of discrimination for not practicing social distancing.

Social justice ministry directed HRD ministry to issue advisory to all states/UTs

Following the JAF letter, the Ministry of Social Justice and Empowerment on April 29 directed the Ministry of Human Resource Development to issue an advisory to all states and union territories to provide equal opportunity to all students with disabilities.

The letter stated that these measures should be taken to “ensure that students with disabilities participate equally with others in online classes and also to take into consideration the plight of such students while finalising the examination schedule.”

The statement by the Foundation said it was now awaiting a response from the MHRD.

A 20-point guide to a disability-inclusive response

Earlier this month, the advocacy group also came out with a 20-point “Disability Inclusive Response for Educational Institutions” which provided recommendations for educational institutions to make their education inclusive for students with disabilities during these challenging times.

The Foundation also said that while after the lockdown, educational institutions may have to adapt to the “new normal”, such as remote learning, social distancing, this “new normal” would have to be non-discriminatory and inclusive to people with disabilities. It reminded them that the Rights of Persons with Disabilities Act 2016 mandates non-discrimination and accessible and inclusive education for people with disabilities.

Also read: COVID-19 Is Leading to a New Wave of Social Stigma

Relevant guidelines needed for students with disabilities in schools too

Meanwhile, Rishad while sharing data as per the “on how Census data further shows that 61% of the disabled children aged 5-19 years are enrolled in school” while as per the All India Survey on Higher Education (2015-2016), conducted by Ministry of Human Resource Development only a mere 74,435 students are enrolled in Universities across India, said: “With schools going online and with so many entrance exams getting postponed, there is also a need for relevant guidelines in that regard as well!”

Rishad also commented that in his address to the nation on May 12, Prime Minister Narendra Modi had spoken about “Sabke Prati Samvedna”, which loosely translates to caring for everyone, and “Aatma-nirbharta” or self reliance. He said, “even though the government may want to take care of everyone the reality is that the invisible, who don’t raise their voices or who are not heard, fall through the cracks if they are not self-reliant.”

The JNU Fee Hike Affects Students with Disabilities More Than We Realise

In India, where a large number of disabled students come from poor families, the demand of a household to pay thousands in rent for higher education is a tall one.

The Jawaharlal Nehru University fee hike issue has not come to a halt yet.

Students are still demanding a complete roll back of the hike and the nullification of the draft hostel manual which was passed without proper consultation by the JNU administration without proper consultation from all the stakeholders concerned. One such group of students who are already a marginalised minority within the campus are students with disabilities. Their complaint is two pronged, the first is about the hostel fee hike itself which is a concern shared by every hostel resident in JNU.

The second complaint is that if the new hostel manual gets implemented, students with disabilities in the campus would no longer be given the mandated 5% reservations in the allotment of hostel rooms, which was still firmly being implemented as per the last hostel manual. This 5% quota in hostel rooms for differently abled students was implemented to be completely in sync with the reservation of differently abled students in education as per the Rights to Persons with Disabilities Act, 2016.

Till now, the JNU administration has followed the norm that every student with disabilities who has got admission in the campus would get a hostel room on a priority basis. Even such students who belonged to Delhi-NCR region could claim hostel rooms, if they are differently abled.

Such an option was not available to other students from the Delhi-NCR region. The reason that preferential treatment has been rightly given to students with disabilities in JNU is so that education can be made more accessible to them, thereby making lives easier for those who are otherwise a marginalised minority as a group, both inside as well as outside the campus.

Even an institution like JNU has, however, often failed to implement the disability reservation in the campus both in faculty recruitment and student selection from time to time.

Also read: JNU Students: You Are Our Only Hope

But that is a matter for another debate. Now, students with disabilities fear that whatever little was being done for them until recently is being diluted under the new hostel rules.

A logical question arises, why do students with disabilities want a status quo on their hostel quota? The reason is pretty simple. First, hostels are a basic necessity for differently abled students because it eases the process of their physical presence at their respective schools and centres as compared to a situation where they would have to live outside the campus and travel from there.

Again, living outside the campus and travelling from their place of accommodation to the campus are two different problems. First, because many differently abled students come from financially weaker sections of society, they would be unable to sustain themselves outside the JNU campus. Secondly, Indian society still discourages persons with disabilities to enter higher education and therefore, if a situation arises where the parents of a differently abled student have to shell out thousands of rupees just on room rent, there is a great chance that such a student would have to eventually quit studying and settle for a job instead.

Another scenario arises where a student with disability can afford to stay outside the JNU campus or if she or he has a house in the Delhi-NCR region. In this scenario, the problem of transportation is a large one. Sadly, our public transportation is not as conducive for persons with disabilities as it should be in a national capital. A big city like Delhi where going from one end of the city to another can easily take two hours on an average, it would be quite a frustrating and tedious task for differently abled students to spend three to four hours of their day just on travelling. It would just add to the list of their problems.

Also read: Social Justice in the Times of JNU Protests

Keeping all such scenarios in mind, the last hostel manual of JNU ensured that all students with disabilities are entitled to get hostel accommodation on a priority basis. This used to be an ideal case scenario and a model which other state universities should have followed in order to encourage differently abled people to enter higher education – a step which the government boasts that it encourages in letter and spirit. However, the changes in the new draft manual of JNU hostels threaten to strip away these basic necessities and the ideal which was followed for so long.

Among the cacophony of mainstream voices from within the campus, issues like these get dwarfed and therefore not highlighted because this particular aspect of the issue impacts only 3-4% of the students within the campus. Even within JNU, the politics of disability activism within the JNU students union is abysmally low. None of the office bearers of JNUSU are persons with disabilities.

The reason why differently abled candidates are not brought to the forefront of campus elections in JNU taps into a bigger problem as one does not usually see differently abled politicians in India, barring extremely rare cases, either.

Ideally, the JNUSU should earmark at least one seat in their committee for which only persons with disabilities should contest in the student body election. This step would go a long way in making JNUSU diverse and would help raise issues related to disability.

This seems too ideal, but JNU is a place which can afford to be idealistic and has shown the way to society to think out of the box.

Martand Jha is a freelance writer based in New Delhi.

MCI Admission Guidelines Continue to Discriminate Against Disabled Doctors

Students are being forced to go to court as the MCI’s board of governors, Centre ignore previous SC, HC orders while refusing admission.

New Delhi: The Medical Council of India (MCI) recently told the Delhi high court discriminatory regulations for post-graduate medical education have been amended. It told the court that people with over 80% disability would no longer be completely barred from being admitted to medical courses.

However, this has not enthused disability rights activists or students with disabilities as they want the MCI guidelines, which they insist are discriminatory, to be quashed.

The MCI told the Delhi HC that candidates with over 80% would now be considered on a case by case basis. They would be evaluated for functional competency while they are using assistive devices.

The submission means little to doctors with disabilities who have completed their MBBS but are being denied admission to the post-graduate MD course. Already several such doctors have gone to court against the MCI directives.

Good enough to be doctors, but not specialists

Recently, the candidature of Anjani Bala, an MBBS doctor from Ranchi, was denied admission to the post-graduation medical course. Bala was evaluated at the Safdarjang Hospital in Delhi. She graduated from the Indira Gandhi Institute of Medical Sciences (IGIMS) in Patna and secured an 80,506 rank in the NEET PG, making her eligible for specialisation.

Talking to The Wire, Bala questioned the logic behind the denial of admission when she has already completed her MBBS. She also interned with all departments.

“If I am found okay to do MBBS, then why am I not able to do MD? If I can do rotatory internship – working with each and every department, both clinical and non-clinical – then why don’t I qualify for MD?” she asked.

Bala said she was not given an opportunity to explain her case to the doctors who evaluated her. “I was just handed a certificate by the staff,” she said.

Bala said she was also surprised by the result of her medical test, which said she was 80% disabled. Earlier tests said she was 70% disabled. She is planning to move the court against the rejection.

Dr Mohammad Shaloo also challenged the MCI guidelines barring admission in PG courses to doctors with over 80% disability.

‘Some PwDs being discriminated against’

The founder of Doctors with Disabilities: Agents of Change, Satendra Singh, said in January this year he wrote to the Union health ministry and the Ministry of Social Justice and Empowerment about “continuous discrimination” against PwDs in the National Eligibility Cum Entrance Test (NEET).

The letter pointed out that the National Testing Agency (NTA) began the online application process for NEET (UG) without any clarity on guidelines for candidates with disabilities. The brochure referred to the old MCI guidelines.

It said these guidelines were challenged in the SC, which directed that seats be reserved for candidates with disabilities who lost a year because of the MCI’s “discriminatory and unlawful guidelines”. However, this was not reflected in the 2019 brochure.

Singh also reminded the government that the MCI’s board of governors did not finalise the new guidelines in December or the first two weeks of January. Candidates with disabilities and their parents were kept under tremendous stress, he said.

“The exam is on 5th May, 2019 and guidelines are yet to be finalised,” he wrote, claiming the board of governors was “deliberately wasting time and playing with the emotions of people with disabilities.” He called it a “deliberate tactic to devoid such people of ample time to file litigations in the courts.”

Medical Council of India. Credit: PTI

MCI guidelines with anomalies notified in February

Though both the ministries did not react to the anomalies, the MCI guidelines for NEET UG were gazetted in February. Singh filed a writ in the high court on February 26 to seek quashing of the guidelines for being discriminatory. The matter will be heard on April 4.

“In the meantime,” he said, “Dr Shaloo was declared ineligible in NEET PG because of these same guidelines. Dr Anjani, who has polio, was also declared ineligible at the Safdarjung Hospital due to these guidelines just days before the counselling was to start.”

Singh said, “The key issue is that post our representation last year, the Ministry of Health modified controversial clauses in the MCI Guidelines and the Supreme Court allowed admission to one, Ashutosh, based on that. However, as the MCI was dissolved and the board of governors was constituted, they approved these modified guidelines during their third meeting.”

But in the February notification, he said, “a key clause was removed which now debars those with more than 80% disability” from seeking admission.

‘New regulations only benefit those with locomotor disability over 80%’

On the MCI’s submission to the Delhi high court that the regulations have been amended, Singh said, “It only solves the problems of those having locomotor disability of over 80%.”

The problems for several other categories persist. “Those who have one hand amputated can’t get admission. Last year, there was an SC judgment in the Muskan Sheikh case from Gujarat. The court asked why can’t she become a doctor as only one hand is amputated. So she got admission. But the new regulations require both hands and defy the SC’s observations.”

Also Read: Health Ministry Delay on NEET Criteria Leaves Disabled Students in a Lurch

Likewise, Singh said those with blood disorders haemophilia, thalassemia and sickle cell disease were also barred. “Those having more than 80% of these disease are not eligible. This is an invisible disability.”

The doctor said, “The question is when you can allow those with 80% locomotor disability – which may include wheelchair users – then how can you debar others with different disabilities?”

‘Those with dysgraphia, neurological disease being left out’

In specific learning disabilities too, the MCI guidelines are discriminatory for both the UG and PG admissions through NEET. “This includes dyslexia, dysgraphia and dyscalculia. Here dysgraphia has been removed from allowed categories. So why have the other two categories been allowed and not this?” he asked.

Similarly, in chronic neurological diseases, he said over 80% cases are not being eligible for admission. Again, a candidate from Haryana was admitted on court orders, but the rules still prohibit such admissions.

Watch: No Relief for Displaced Residents of Blind School Demolished by DDA

On December 15, 2017, the Lui Progressive Welfare Association for the blind in Janakpuri, New Delhi, was razed to the ground without any prior notice. More than two months later, the residents of the hostel remain displaced.

On December 15, 2017, the Lui Progressive Welfare Association for the blind in Janakpuri, New Delhi, was razed to the ground without any prior notice. More than two months later, the residents of the hostel remain displaced.

Ehlena and Her Dog, Wonder, Win at US Supreme Court

Ehlena was born with cerebral palsy, a neurological condition that severely limited her mobility. Wonder was trained to help her balance, retrieve dropped items, open and close doors, turn on lights, take off her coat and other tasks.

Ehlena was born with cerebral palsy, a neurological condition that severely limited her mobility. Wonder was trained to help her balance, retrieve dropped items, open and close doors, turn on lights, take off her coat and other tasks.

Ehlena Fry and her trained service dog, Wonder, are shown in this handout photo provided by the American Civil Liberties Union. Credit: Reuters

The US Supreme Court on Wednesday sided with a disabled Michigan girl whose school refused to let her bring her service dog to class, making it easier for students like her to seek redress for discrimination in federal court.

The justices ruled 8-0 that Ehlena Fry, 13, and her parents may not be obligated to go through time-consuming administrative appeals with the local school board before suing for damages for the emotional distress she said she suffered by being denied the assistance of her dog, a goldendoodle named Wonder.

“I saw with my own eyes how Wonder helped my daughter grow more self-reliant and confident,” Stacy Fry, Ehlena’s mother, said in a statement. “We are thankful that the Supreme Court has clarified that schools cannot treat children with disabilities differently or stand in the way of their desired independence.”

The justices sent the case back to a lower appeals court to determine whether Ehlena’s complaint involves the impermissible denial of a proper special education.

The dispute arose in 2009 when Ehlena’s elementary school in Napoleon, Michigan refused to allow her to attend school with Wonder. The school said she already had a one-on-one human aide, as part of her individualised special education program.

The family eventually moved to a different school district where Wonder was welcomed. They filed suit in 2012 in federal court, claiming discrimination under the federal Americans with Disabilities Act, which permits service dogs in public institutions.

The American Civil Liberties Union, which represented the family, said the ruling will remove unfair legal hurdles for victims of discrimination that prevent students from seeking justice guaranteed by the Americans with Disabilities Act.

Napoleon Community Schools Superintendent Jim Graham said he had no comment.

Ehlena and her parents sued the school district seeking money damages for emotional harm, claiming the school deprived Ehlena of her independence, including in intimate settings such as the bathroom.

Wednesday’s ruling overturned a 2015 decision by the 6th US Circuit Court of Appeals in Cincinnati, Ohio upholding a dismissal of the lawsuit. The appeals court had said that under the Individuals with Disabilities Education Act (IDEA), a federal law governing special education, the family had to exhaust all of the administrative hearings in its service dog dispute with local and state officials before filing suit.

Writing for the court on Wednesday, Justice Elena Kagan said that if the substance of a lawsuit does not claim the denial of a proper special education under IDEA, then exhausting the administrative remedies is not required.

(Reuters)

Around the Globe, People With Disabilities Face Unseen Discrimination

People with disabilities lag behind in employment and health indicators across the world. So severe is the issue worldwide that in 2014 the UN created a Special Rapporteur position to examine the problem, which affects many of the one billion people – about 15% of the world’s population – who have some form of disability.

It’s past time to dismantle the (often invisible) barriers that keep people with disabilities less healthy, employed and educated than other groups worldwide.

People with disabilities face physical barriers structural barriers. Congresswoman Mara Gabrilli, a quadriplegic and an international activist on disability issues, makes her way to Arena de Sao Paulo stadium in Sao Paulo, June 1, 2014. Credit: Chico Ferreira/Reuters

People with disabilities face physical barriers structural barriers. Credit: Chico Ferreira/Reuters

In Argentina, there is no formal or legal barrier to women becoming judges. But according to a 2013 report, 56% of inferior judges, 67% of appeal judges and 78% of state justices in Argentinean courts are men.

Why should this be the case? The answer is, of course, structural inequality.

It’s also the reason why today, across the world, people with disabilities lag behind in employment and health indicators across the world. So severe is the issue worldwide that in 2014 the UN created a Special Rapporteur position to examine the problem, which affects many of the one billion people – about 15% of the world’s population – who have some form of disability.

In Latin America, though statistics are not fully reliable, we know that many children with disabilities are not being educated: only 20% to 30% of children with disabilities attend school. According to the International Labour Organisation, 70% of people with disabilities in the region are unemployed.

In the US, people with disabilities are segregated and over-represented in civil and criminal institutions. According to the American Civil Liberties Union, 70% of US public school students who are physically restrained or secluded have disabilities, 60% of people in local jails have some form of mental disability and 48% of people with disabilities have an income of $15,000 or less.

The UN’s Special Rapporteur of the Human Rights Council has pointed out that people with disabilities are also more likely to experience poverty and social exclusion and less likely to be employed, receive an education, or gain access to public services; they are more likely to be the victims of violence and contract HIV/AIDS.

Principle of non-discrimination

As I have written in my latest book, understanding how both women and people with disabilities – not to mention people of colour, immigrants and other minority groups – are invisibly constrained requires understanding the difference between legal equality and real equality.

In liberal democracies, citizens have the right to equal treatment under the law, which means that governments should not differentiate among people without good reason to do so. This is known as the principle of non-discrimination.

But what if a government wants to reduce car accidents? In that case, it is allowed to provide driver’s licenses to some people and not to others.

Passing a driving test would seem to be a reasonable justification for determining who can and cannot drive a car. Being male or white, on the other hand, would not be legitimate, since sex and race have no connection with good driving.

In other words, public authorities may distinguish between groups of people – but only with a specific policy goal in mind.

Supporters of affirmative action in US university admissions, at the University of Texas. Kevin Lamarque/Reuters

When just not discriminating won’t cut it

But sometimes a government may actually end up creating or perpetuating inequalities among groups by complying strictly to the principles of equality and non-discrimination.

Take, for example, the original case of Argentina’s judiciary gender gap. No law says women cannot become lawyers, or be appointed as judges, and yet the facts strongly suggest that something is stopping them.

That’s because true equality requires a government to actually dismantle structures that perpetuate group disadvantage, either by providing preferential treatment or special protection to those on the wrong side of invisible barriers.

Social movements of the second half of the 20th century pushed governments across the world to implement such policies, from affirmative action in university admissions for racial minorities in the US and quotas for women in the Argentinean congress to Uruguay earmarking public-sector jobs for Afro-Uruguayans.

None of these preferential treatment policies are a magic solution for ending group discrimination and segregation, but without them the number of African-Americans in US and Brazilian universities, or women in the Argentinean Congress, would be far less than they are today.

Still, people with disabilities remain largely excluded from such efforts, despite the many obstacles that persist in their everyday lives. These barriers can be both invisible, in the form of attitudes or assumptions held by others, and physical, as when steps or staircases literally prevent people with disabilities from accessing public spaces, offices and transport.

True equality, that ‘most difficult problem’

The urgent necessity of such policies for historically marginalised groups was made most eloquently by US Supreme Court Justice William Brennan in the 1982 in Plyler v Doe, which struck down a statute that allowed schools to deny admission to undocumented immigrant children.

In the judgement, Justice Brennan wrote of structural inequality that:

Sheer incapability or lax enforcement of the laws barring entry into this country, coupled with the failure to establish an effective bar to the employment of undocumented aliens, has resulted in the creation of a substantial ‘shadow population’ of illegal migrants – numbering in the millions – within our borders … This situation raises the spectre of a permanent caste of undocumented resident aliens, encouraged by some to remain here as a source of cheap labour, but nevertheless denied the benefits that our society makes available to citizens and lawful residents.

Brennan concluded with a passionate defence of the “equality as non-subordination” principle that today underlies affirmative action, quotas in congress and other measures to prevent the invisible discrimination faced by people in historically marginalised groups.

There are some examples of specific measures intended to help level the playing field for people with disabilities. Austria mandates that 4% of private and public-sector jobs must be set aside for people with long-term disabilities, for example. Advocacy groups also recommend increasing the accessibility of public information and educational materials and mandating inclusive workplaces.

But such initiatives remain rare. What would Justice Brennan say?

Relaxation rooms that deliver different stimuli using lighting effects, colour and sounds – can help calm autistic students. Credit: Pilar Olivare/Reuters

Governments have a duty – not to mention an obligation under international human rights law – to respect and protect all citizens, including those with disabilities. That means undertaking all possible measures to dismantle barriers to equality within their borders.

It’s not as simple as just adding a wheelchair ramp. People with disabilities have the right to true equality, not just equality under the law.

Roberto Saba, Professor of Constitutional Law & Human Rights, Universidad de Palermo.

This article was originally published on The Conversation. Read the original article.

The Right to Education is the Responsibility of Every Indian Citizen

The greatest barrier to inclusion of children with disabilities is the wrong attitude on the part of individuals.

My daughter Moy Moy has a severe mental and physical disability.

She is now 26. I have cared for her for her entire life. That makes me something of a disability expert. But I wasn’t born that way. When Moy Moy arrived, I was an ordinary mother with two typical children. I had no experience or training and no idea about anything disability-related. All I knew was that she was mine and I had to bring her up. What I didn’t know, I learned. The skills I didn’t have, I acquired.

As schools around India struggle to adapt to the challenges that the Right to Education Act has introduced, particularly regarding children with special needs, I am newly moved to think about how families adapt and respond to the birth of a child with disability. Families are, of course, the original democracy: full of people with whom you might not even choose to be acquainted, let alone be related to. Principals and teachers could learn something from this phenomenon. They shouldn’t get to choose the children they teach, any more than families choose whom they include and bring up.

Our adaptability is actually one of our best traits. It’s what gives us our remarkable resourcefulness and problem-solving abilities. As a species, we are amazing: we have built a world that is complex and sophisticated, conquering time and space and meeting challenges of monumental proportions. We didn’t do this by confining ourselves to boundaries and mixing only with people exactly like ourselves.

My own story is emblematic of this necessary mingling and expansion. I was born in a small city in the United States but I married a guy from Mumbai and settled in Dehradun. Our children were raised in India but hold US passports. Our son is married to a girl from China and they live in London. Our daughter is in love with a boy from England and they are at the University of Chicago doing PhDs (she’s a Catholic, studying the Hebrew Bible; he’s a Jew doing Islamic Studies).

There are many who totally reject such stories. They are the ones who believe that we should all stay in our own contracted circles, marry only our own kind and produce children who think and behave just as we do. ISIS, RSS, born-again Christians, Jewish zealots – God bless them all, but the world has moved on. Our children are simply not interested in that kind of limited life.

Inclusion must begin in schools

Neither should our schools. Schools should be reflective of our world. We should be able to stand at the open door of any school and say with pleasure and anticipation as the children rush in: Here comes everybody! Rich, poor, boys, girls, smart, slow, fit and disabled: everyone is welcome here.

The idea that schools are for everyone, that every single child has the right to an education, is one of the most revolutionary concepts in the world. It is the foundation of democracy, the great equalizer. It is what makes it possible for a boy born in poverty to become prime minister of his country, for a girl born in a tiny African village to win a nobel prize in literature.

But it’s more than that. Education is richer, more vibrant and more sustainable when everyone takes part, more effective when it recognises and encourages all kinds of learning.

India’s Right to Education Act is unambiguous: no child can be denied an education because of a disability. Yet we all know that a law on paper and a law in which the public believes are two different things.

Shefali, and the case of a bad school

Shefali was born premature and has cerebral palsy. She needs some help to get around and her speech can be hard to understand until you get used to it. She’s a little slow to grasp new concepts, but she is eager to learn and she’s curious. She’s friendly and engaging and easy to like.

Because her parents are educated and aware, they enrolled her in our Early Intervention Centre when she was an infant – and she did beautifully. At five, they admitted her to the Kendriya Vidyalaya in their neighbourhood and we went for the initial interview to help Shefali make the transition.

Right away, we knew it wasn’t going to be easy. The principal was deeply opposed to any “child like Shefali” attending her school (but what is a “child like Shefali” anyway?) and adamant that it wouldn’t work for her to be in class with ‘normal’ kids. Then she set out to prove it.

A principal who is reluctant to accept inclusion can sabotage the best law. This one told us that her hands were tied. She could not legally refuse to admit Shefali, but she could – and she did – make sure she was so miserable that in a short time she would beg not to be sent to school.

The ayahs were told not to do anything extra for her – her mother had to come in every morning to take her to the toilet. The class teacher was told to make no allowances – Shefali could keep up with the others herself, or she could fall behind. The children were encouraged both subtly and overtly to isolate her, going so far as to leave her alone in a darkened classroom when the others went to play.

The greatest barrier to inclusion is not overcrowded classrooms, untrained teachers, inaccessible toilets or lack of money. The greatest barrier is bad attitudes.

A school that truly wants to include children will do it. They will figure it out as they go along, just as my husband and I did when we adopted Moy Moy. And that brings me to my last story.

Gamru school, a simple but successful model

Gamru is a simple school in Himachal. They have no fancy equipment or major funding. All they have is a genuine love for children, a bedrock belief that every single child has potential, and a principal who stands like a pillar of conviction and belief.

Gaurav is profoundly deaf and has cerebral palsy and intellectual impairment. Kailash was born with a severe disfigurement of the skull which has left him with only one eye and a very strange-looking face. Both of them went first to other schools where they were “deeply unhappy”.

At Gamru, they were welcomed and included. Their teachers helped the other children accept and embrace them through example, direction and high expectations. They adapted the learning environment so that it worked for both boys. Today both are not only thriving academically (at their own unique levels) but are also happy, popular and emotionally healthy.

Gaurav and Kailash demonstrated their potential for learning once they found the right school. They succeeded – each in his own way. Isn’t that what school should be about? Turning on the light of learning in a child’s eyes; helping her find her path, helping him discover what he was sent here to do.

And isn’t this what we want for all our children? Whether they have disabilities or not, don’t we want them to grow up to be good, caring people, people who accept each other and look out for one another?

Because one day – and you can write this down – one day, if we live long enough, all of us will be disabled. And then we are going to need and want people around us who have practiced kindness and compassion from an early age.

Inclusion just makes sense.

As Martin Luther King said: “The arc of the moral universe is long, but it bends towards justice.” The Right to Education Act has bent that arc closer. Making sure it extends to every single child in India is the responsibility of each citizen.

Use of ‘Divyang’ is Regressive and Patronising, Say Persons With Disabilities

The rail budget became the first official document to use the term ‘Divyang’, coined by Prime Minster Narendra Modi to refer to persons with disabilities. But it has not gone down well with the disabled community

File picture of visually impaired girl in Uttarkhand feeling the shape of a vehicle. Credit: Sumita Roy Dutta. Wikipedia Commons CC BY-SA 4.0

New Delhi: The rail budget is an unusual occasion to give a new name to people with disabilities, and that too an official one. The government did – using the term ‘divyang‘ for the first time in an official document – and it might just have got on the wrong side of an already agitated part of society. There’s a good chance that it may escalate into a confrontation between persons with disabilities and the government in the months to come if the Centre goes on to give the new term a legal base.

In his budget text, railway minister Suresh Prabhu used the expression ‘divyang’, coined by Prime Minister Narendra Modi last December, to refer to the disabled community, thus making the document the first government text to have mentioned it officially; the usual official (and widely accepted) nomenclature is persons with disabilities (PWD).

This change of terms springs from the December 27 ‘Mann Ki Baat’ episode where the prime minister said persons with disability have a “divine ability” and therefore should be referred to as divyang instead of the Hindi term viklang. Soon after, various ministries jumped into action. The ministry of social justice and empowerment (MSJE) took the lead by writing a letter on January 29 to various stakeholders and activists in the states and Union Territories to build a consensus on giving a legal basis to divyang instead of the present viklang.

SJE minister Thawaarchand Gehlot’s letter said, “With a view to taking forward the use of the word ‘divyang’, that is ‘persons with extraordinary abilities’ and giving a legal base for the use of this word, the department intends to invite the views of all stakeholders including states/UTs.”

However, the news about the ministry’s proposed change in nomenclature, including in the legal instrument, was not taken lightly by the activists and others from the community. Two sets of letters were addressed to the PM expressing their disagreement with it, first on January 17 and then in an open letter on January 22. However, Modi continued to use the term publicly, first at a rally in Varanasi on January 22 and at the launch of the government’s accessibility campaign on December 3. Addressing the public in Varanasi, he said, “What I want to do is change the mindset about differently-abled people. When I say let’s use the word ‘divyang’, it is about that change.”

In the January 17 letter, as many as 71 organisations and individuals reportedly said, “Even while not questioning the motive behind coining of this expression (by the PM), it is needless to say that mere change of terminology is not going to bring about any change in the manner in which people with disabilities are treated (in India). Invoking divinity will not lessen the stigma and discrimination that persons with disabilities have been historically subjected to and continue to encounter in their daily lives.” The signatories said, “We would like to reiterate that disability is not a divine gift. And the use of phrases like ‘divyang’ in no way ensures de-stigmatisation or an end to discrimination on grounds of disability.”

After the January 22 address of the PM – read out by finance minister Arun Jaitley at the launch event of the government’s accessibility campaign in New Delhi – the National Platform for the Rights of the Disabled (NPRD) said in an open letter to Modi, “Exclusion and marginalisation can’t be addressed by using patronising terms like ‘divyang’. On the contrary, it will only invoke sympathy and underline that charity is what counts.”

Making ‘divyang’ official

Now that the term is mentioned in the Railway Budget to refer to PWDs, it seems the Centre is making the term official. This has forced the disabled to ask the government to explain what defines it and the need to expand the definition of PWDs to include divyang.

Meenakshi Subramaniam, one of the signatories to the January 17 letter and associated with the Chennai-based Equals Centre for Promotion of Social Justice, asks, “We know what viklang means, what is the scope of the word. But we don’t know what defines divyang. Who is a divyang? Because we know we are not divyang, we have no divine limbs and abilities. Since no separate law has come up in the country (the existing law is called Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Protection) Act, 1995) and the existing one calls us PWDs, we need to know who is a divyang.”

Wheel-chair bound Subramaniam underlines that the consensus term for the community as per the United Nations Convention on Rights to Persons with Disabilities (UNCRPD), to which India is a signatory, has been PWD. “Till now, that was the term used officially and viklang in Hindi. People from the community have more or less accepted the term viklang because it points at an organ, an ‘ang’, that is ‘vik’ or not functioning as it should. But divyang is an absolutely regressive and patronising term as it puts us in the charity bracket. We don’t want anyone’s sympathy but our rights. Divyang means you have divine limbs or organs, which means we don’t need anything. We don’t want divine powers, nor do we have any. All we want is the right to be treated equally and the government can’t wash off its responsibilities just by coining a new term.”

Here, Subramaniam and some others from the community refer to the term ‘harijan’ coined by Mahatma Gandhi to refer to the dalits. “Gandhiji’s intention was good too; he wanted to stop people discriminating against the Dalits by calling them children of god. Finally, nothing changed for the dalits on the ground,” points out Subramaniam.

P.K. Pichai, the first person with disability to become the chief commissioner for disability in the Government of India, says “Finally, someone had to go to the Supreme Court urging that the expression harijan should not be used for dalits.” He too finds the term divyang patronising. “I don’t want anyone to sugar-coat my disability. It takes people away from the reality. Also, like there are handsome, ugly, tall, short, fair persons in a society, a blind person like me is also part of that diversity. My blindness doesn’t say anything more than that diversity, certainly nothing about whether I have divine abilities or not.”

Pichai says he has problems with terms like differently-abled and specially-abled too. “These are again patronising terms. Ability is ability and different people have different abilities. Don’t the so-called able people have different abilities? Then why are we only singled out? You have to see the mindset behind a term. For instance, before using the term handicap you should know where it came from. The word was originally used in Europe to mean beggary and then it graduated to include the PWDs too as people thought the disabled can survive only with a bowl. Same with Hindi terms like akhyam. If mindsets have to be fought, it has to done not by giving a glorifying term but by making efforts that actually bring changes on the ground.” Delhi-based Abha Kheterpal, also a signatory to the January 17 letter, calls it “an attitudinal barrier which can’t be legislated.”

‘Divyang’ will lead to identity crisis

“The term divyang can invoke emotions in people but has no practical use. We have been made ‘human-angel hybrids’ now. I am a psychologist by profession and I can tell you that this will lead to an identity crisis among PWDs. People will be confused as to who they are. On one hand, they are people with divine powers and on the other, they can’t even get a glass of water on their own,” says the wheelchair-bound activist. She also points out, “It doesn’t work even from the economic point of view. We are a sizeable population in this country, so we should be adequately educated and employed. Public places should be made accessible to us so that we can contribute to the economic wellbeing of the country.”

Reacting to the Railway Budget, Equals, in a press note on February 22, asked the government to not only define divyang but also posed some others questions including why wheelchair services at stations have been designed as paid services for PWDs.

“Till now, even if the wheelchairs are for free at railway stations, a PWD has to pay a hefty sum to the person pushing the chair. It therefore can’t be used by all. The February 22 rail budget mentions ensuring availability of wheelchairs in sufficient numbers only at A1 stations. Also, since the wheelchair service has been mentioned along with other special services like battery operated cars, etc., there is no clarity on whether we still need to pay for the services,” she points out.

Though the government’s accessibility campaign mandates the railway ministry to make all A1, A and B platforms accessible by July 2016, the rail budget only mentions that it will try to make “all stations under redevelopment accessible by the divyang” and will “make effort to make at least one divyang friendly toilet at each platform in A1 class stations during the next financial year.”

Disabled People’s international chairperson Javed Abidi points out another anomaly in the rail budget. “It says there will be at least one disabled friendly toilet in all A1 stations. But I want to remind the ministry that all A1 stations already have one accessible toilet. What is needed is all existing toilets be made accessible and to have one such toilet on every platform.”

Amidst such teething problems, with the added concern now over the rail budget using the term divyang “without taking the disability community into confidence”, Khetarpal says, “I plan to file an RTI application to know how many organisations have been asked for inputs by the Union minister for SJE on using the new term instead of viklang.”

“She’s Our Daughter. The Law be Damned.”

That foreigners can’t be appointed as guardians to persons with disabilities is a travesty of justice to those who have been like parents to people who need help

Family portrait. Credit: Alessandro Capurso, CC 2.0

On Thursday I attended a meeting at the Dehradun District Magistrate’s office. As one of the city’s prominent organisations for people with disability, we were asked to be present at a session to decide on guardianships for a number of adults with mental handicaps.

By law in India, a person over 18 with a mental handicap is no longer automatically in the care of her parents or siblings. Over 18, the State steps in (with both flat feet) and things become more complex.

At this meeting, eight individuals were represented by a voluntary organisation which had been caring for them for over 40 years. Four were spoken for by family – one mother; one father; two sisters.

After granting guardianship to all of those who had applied, the District Magistrate paused to thank them for their good citizenship, for their willingness to shoulder the responsibilities of caring for a person with a disability and for the strength of character behind their decision. I liked that. Because it’s not an easy thing to do for a lifetime and it’s nice when it’s acknowledged.

During the process, however, Rizwan Ali, my colleague at the Foundation and also a lawyer, pointed out a clause in the law which had till now escaped my notice. In a list of criteria for being appointed a guardian was this one:

A guardian must be a citizen of India. Foreigners, even though they be persons of Indian origin, may not be appointed as legal guardians.

I have lived in India for so long my first thought was “There’s got to be a way around this.” With the formalities over, I asked for permission to speak, saying I had a question I wanted him to clarify.

Briefly, I explained my situation: I am an American with “Person of Indian Origin” Status. I’m married to an Indian and have been living in the country for 34 years. My husband and I adopted a child with disabilities when she was 2 weeks old and we have been caring for her for the past 25 years. I started an organisation for her which now serves hundreds of children with disability every day.

And then the question: Are you really saying that I cannot be her legal guardian? The District Magistrate and I went back and forth a few times. “Madame,” he said. “This law must have been written after a lot of thought. You are obviously a good person, even though a foreigner. But there must be foreigners who are not so good. Hence this law.”

“Of course!” I agreed. “But there are also plenty of Indians who are not so good. That can’t be the reason for the law.”

Finally, the Social Welfare Commissioner weighed in, in the traditional, buying-time-approach so common to Indian bureaucrats: “Madame, aap apply kijiye. Hum dekhae jayengae.” (Just apply, Madame. We will see what happens then.)

The District Magistrate glared at him. “If she submits an application, I will reject it.”

At least he was honest.

But he couldn’t possibly understand what his words did to me. I felt as if I’d been hit by a bus. It was all I could do to stop myself from crying out. Because I have three children and it felt as if one of them was being torn out of my life.

The author’s three children: Anand, Cathleen and Moy Moy. Credit: Jo McGowan Chopra

In real terms, nothing will change. The government of India is not going to swoop into our home and wrestle Moy Moy away from us because I am not her appointed guardian. The last thing the government wants to do is take on another responsibility. It has been ignoring people with disability for generations; it’s not going to pick a fight with someone who is being well-looked after.

But if Moy Moy needs an operation and someone in the hospital I take her to decides to be serious about medical consent law, my being her mother – the person who has cared for her since the day she was born – will make no difference whatever. Legally, I am no one in her life.

And if I want to take her with me to America to meet her grandfather, her brother, her sister, her aunts and uncles? Not happening. She cannot apply for a visa herself and legally, I can’t do it for her.

Her disability pension, guaranteed to her under the law? Who will apply for it? Not me. I don’t exist in the eyes of that same law.

“It’s nothing personal,” someone told me. “It’s nothing against you. It’s just the way the law is written.”

I know. Like when your house is broken into and all your possessions are stolen. Nothing personal!

Or when you are mowed down by a hit and run driver and you end up in the hospital, fighting for your life. Nothing personal! I know. The District Magistrate has nothing against me personally. He’s just upholding the law. He didn’t write it; he knows it doesn’t apply to me.

And yet it does.

My daughter. My children. My life.

I believe that there is no parent anywhere who would accept this travesty of justice. I am Moy Moy’s mother. I have given up my life for her. She is 25 years old and I have been with her for every single one of those years. Every. Single. One.

That’s not small. That is actually huge.

So let’s celebrate that. Let’s celebrate a quarter of a century of devotion and love. Let’s celebrate Moy Moy and her family: her sister and her brother. Her parents. Let’s celebrate this family. Because oh my gosh: we love this girl. She is ours. She belongs to us.

The law be damned. She is ours.