World disability day

Who Doesn’t Love A Party?

But what we’d all really enjoy is to wake up on December 3 and find that World Disability Day has been cancelled.

International Day of Persons with Disabilities is observed today, December 3.

Disabled kids are like any kids. They love being made a fuss of, getting out of school to do something more interesting, having fun and eating laddoos.

World Disability Day gives them a reason to do what they most enjoy: being kids and having fun.

At Latika this year, we’ll celebrate by taking all 300 of our children for a glorious picnic. Some of our favourite donors have contributed generously to make sure they’ll have plenty of burgers, pizza, ice cream to eat, games and rides to enjoy and treats and surprises to take home. And of course, we adults will enjoy it all just as much as the kids will.

But what we’d all really enjoy is to wake up on December 3 and find that World Disability Day has been cancelled.

Who needs their own day?

The United Nations has around 200 days each year which are meant to “educate the public on issues of concern, to mobilize political will and resources to address global problems, and to celebrate and reinforce achievements of humanity.” Proclaimed in 1992 by a UN General Assembly resolution, December 3rd is the official day to create awareness about the rights of disabled people.

While there are a few days in the 200 that celebrate achievements and victories (Nelson Mandela Day, World Creativity and Innovation Day), most are reminders of travesties like genocide, human slavery and environmental degradation, or of catastrophes waiting to happen like World Malaria Day, Illegal, Unreported and Unregulated Fishing Day or World Day Against Child Labour.

You’ll notice, however, that there is no ‘World Day for White Men,’ no ‘World Day for the Wealthy.’

The sad truth is: if you’ve got a day of your own, you’ve got problems.

Thanks, we guess . . .

Having a Day just for the disabled does mean that at least important people are aware of those problems. But let’s not pretend it’s something to celebrate. At least 15 percent of the world’s population has a disability. That’s not the problem. The problem is that most governments, including our own, neither acknowledge the existence of disabled children and adults nor plan for them.

Here in India, according to a recent UNESCO report, 75% of disabled children under 5 still aren’t in school. And according to a study by the National Centre for the Promotion of Employment of Disabled People, 67% of disabled adults can’t find a job. A big part of the problem here in India is that our numbers are inaccurate: while most of the world reports a disabled population between 14 and 16% of the total, here in India, according to our most recent census, only 2.2% of the population is disabled.

Whatever the reasons for our wildly inaccurate headcount, the end result is the same: what you don’t count, you don’t plan for. And what you don’t plan – obviously – never happens.

A challenge, not a celebration

The Days that the UN designates are meant not to make us feel proud of our compassion and awareness but motivated to purposeful action. In 1988, World Polio Day was announced and by 1994, India, at that time home to 60% of the world’s cases, announced its commitment to total eradication of the disease.

India took World Polio Day as a challenge, not as a fact that couldn’t be changed. Over the next two decades, public health workers across the sub-continent toiled heroically and without pause until they reached their goal. India has been polio free now for fourteen years – an astonishing achievement which the entire world views with awe.

It has to matter.

For World Disability Day to matter here, we need to recognise what is at stake. 15% of India’s 1.4 billion population is huge. Two hundred and eleven million, to be precise. 211,000,000 citizens of India are denied a meaningful education, employment and physical access simply because of a condition they happen to have.

Forget about their personal deprivations and daily anguish; forget about their rights and dreams – what about the loss to the country? What about all that wasted talent, commitment and power? Are we so well-off that we can afford to squander such wealth?

This World Disability Day, let’s pledge to eliminate the need for a special day for the disabled. We did it for polio. We’re doing it for girls’ education and women’s rights. We can do it now for disability. Let’s commit to making our country and our world so accessible and so accepting of every person that disability simply won’t matter – it will just be a quirk, like being left-handed or wearing glasses. No big deal. No need for a special day.

Jo McGowan Chopra is American by birth and a writer by profession. A mother of three, she has lived in India for the past 34 years with her Indian husband. She is co-founder and director of Latika, a voluntary organisation for children with disability in Dehradun. She blogs at www.latikaroy.org/jo.

‘Poor Accessibility Standards, Lack of Govt Interest Mars Progress’: Disability Rights Activists

Activists have called for a uniform pension balanced with the inflation rate, higher education and employment opportunities and an accessible environment for persons with disabilities.

Today, December 3, is observed as International Day of Persons with Disabilities.

New Delhi: Several rights activists in India have called for urgent steps to address the issues of accessibility of buildings, higher education, and provisions for pension for the persons with disabilities.

While the Rights of Persons with Disabilities (RPWD) Act, 2016, has brought massive changes over the last few years and given more teeth to persons with disabilities, many departments dealing with their rights and entitlements are not much aware about the Act.

Therefore, what needs to be done is mass sensitisation, general awareness and attitudinal change towards persons with disabilities. This is required to be done at a high-level so that it harmonises with the United Nations Convention on the rights of persons with disabilities.

Moreover, the government’s Accessibility India Campaign has not been very successful, but it has created awareness among people, as many new ramps can be seen in the new public buildings. However, easy access to other public facilities is also required.

The National Policy on Disability is still in the draft stage, and needs to be first notified, and then operationalised in all sectors, including health, education, skill development, employment and tourism. The need of the hour is mainstreaming the inclusion of people with disabilities across all sectors and ministries.

Anjlee Agarwal, executive director, Samarthyam National Centre for Accessible Environments, told The Wire, “If we look at the history, there have been many changes from the medical model to the social model to the inclusive model of disability. The inclusive model has worked well in India in terms of inclusion across all the ministries and departments. It also includes considering people with disabilities not just as beneficiaries but also as people who can contribute to the society.”

Also read: India’s New Draft National Policy on Disability Is Disconnected From Reality

‘Ensure disability inclusion, provide uniform pension, and higher education’

Agarwal said she has a few demands from the government. First, disability inclusion should happen across all sectors, departments and ministries; second, the disability pension should be balanced with the inflation rate so that a person with disability who is living below the poverty line and not employed can at least get two meals a day, and get rehabilitation services out of that pension.

Third, she said there needs to be some uniformity in the amount of pension given to the persons with disabilities across all states.

“There is no synergy in the disability pension that is being paid in various states since it is a state subject. Delhi pays Rs 2,500 per month as pension whereas in Odisha or Chhattisgarh, the amount varies between Rs 800 and Rs 2,000,” she said.

The rights activist noted that while primary education is free for the children with disabilities, no such attention is given to their higher and technical education.

“So there should be a mandate in colleges and technical education [institutions] to provide them with higher education. Also, there should be no discrimination that persons who are blind cannot opt for science courses or those with hearing or speech impairment cannot go to IITs or IIMs.”

‘States not showing interest, spending adequate funds on accessibility of buildings’

Agarwal, who has conducted accessibility audits in Delhi Metro, Dilli Haat and various national monuments and government buildings, said that her final demand would the implementation of the Accessibility India Campaign.

“The decentralisation of the campaign has happened in the last two to three years. It has now become the responsibility of the states to implement the campaign and see to its monetary requirements,” she said.

She added, “The states are not showing any interest in either implementing [the Accessibility India Campaign] or spending funds on the accessibility of the public or private buildings. So what is happening is that the campaign has taken a backseat in terms of visibility and accessibility of buildings and public transport.”

As such, she said, “whatever has happened under the campaign was when the funds came from the Union Ministry [of Social Justice and Empowerment] under the Scheme for Implementing of Persons with Disabilities Act, 1995 (SIPDA). But when it was passed to the states, there was no cohesion or implementation.”

“In the new buildings, there is no mandate to cover disability or penalise those violating the law,” she said, adding that “the violations are happening every day.”

Also read: Systemic Delays, Red Tape Plague Disability Rights Space in India, Say Activists and Experts

‘Make accessibility standards mandatory like fire laws for all built environment’

She demanded that “it [accessibility standards] should be made mandatory like the fire law in all the built environment, transportation eco-system and information and communication technology. And if there is a violation, then strict punitive action should be taken against that particular department and agency. Additionally, capacity building should happen for all the big implementation firms and construction firms.”

“The National Building Code, 2016, mandates the accessibility elements for different kinds of buildings, and this should be made compulsory for all the concerned players and agencies,” she said. “Likewise, for the roads and highways, the Indian Roads Congress codes on universal accessibility should be followed strictly,” she added.

Some progress made but a long way to go

Subhash Chandra Vashishth, advocate and director of Centre for Accessibility in Built Environment Foundation, said in the last five to six years, the disability space has seen several important developments.

These included the notification of the Rights of Persons with Disabilities Act, 2016, and its Rules in 2017, and the launch of the Accessible India Campaign, which focused on three major verticals of accessibility – public buildings, transportation, and the website.

“In this period, a major positive change that I see is an effort on the part of the government to mainstream the issue of disability within different ministries. Under Section 40 of the Rights of Persons with Disabilities Act, the Government of India has tasked different ministries to develop their own sector-specific accessibility guidelines. This is a huge change from the way earlier governments had looked at disability inclusion,” he said.

“Earlier, only the Ministry of Social Justice and Empowerment was solely responsible [for the implementation of the Act],” he said, adding that “now, there’s an effort to ensure that each ministry takes responsibility for disability inclusion and implementation of the Act with respect to the areas governed by them.”

He pointed out that some of the ministries have drafted their own accessibility guidelines, which will be implemented, and “will be enforceable once notified under Rule 15 of the RPWD Rules.”

He also said that the persons with disabilities are provided with a 10% goods and services tax concession on cars – both adapted and automatic, and manual transmission. “They will also get toll tax exemption on the highways,” he added.

Several cracks still remain

“When we listen to the users [of these facilities], [we realise] that there are still several cracks [in the implementation of the Act], he said.

“The larger need at this point of time is sensitisation of the community, both in the government and general public, as well as among the persons with disabilities and their families, about their rights. There is also a need to enforce the provisions of the law and policies on the ground and also create monitoring mechanisms.”

He further said that the “people with disabilities also need to be given a representation in politics.” He added that “this is already being done by reserving seats for them and nominating them in municipal corporations and panchayats in some states such as Rajasthan.”

He also called for the government to reach out to rural areas where a large number of persons with disabilities cannot access basic facilities, and built environment and transportation.

Were Assembly Polls Accessible to Voters with Disabilities?

The Election Commission declared ‘Accessible Elections’ as its theme for 2018. Activists say there is still much to deliver.

New Delhi: This July, the Election Commission (EC) held a two-day National Consultation on Accessible Elections, aiming to make voting more accessible for people with disabilities. Yet it failed to act on recommendations concerning people with intellectual and psycho-social disabilities. Activists are demanding immediate action.

Talking to The Wire, mental health activist Ratnaboli Ray lamented that “disabled people are not even considered voters, which is why there are no proper arrangements.”

‘Specified set of rules, sensitisation needed’

Noting that “each disability requires a specified set of rules,” she explained: “It is not that you make a ramp and give access to wheelchair users and that is enough. Wheelchair is not an equipment, it is not an accessory – along with it you need to facilitate a climate for meeting their other needs too.”

People with psycho-social or hearing disabilities need interpreters, Ray said. Election staff also need to be sensitised: “The election staff needs to be trained in disability etiquettes. They need to be patient, should know how to deal with strange requests of persons with disabilities, and told to never call them names like ‘langda’ or ‘lula’.”

She said a manual was prepared for the EC a few months ago with inputs from about 20 organisations, but key suggestions are yet to be implemented.

Also read: Disability Activists and EC Work to Make Assembly Polls More Accessible

‘Do not exclude persons with disabilities by labelling them as having unsound mind’

Delhi-based disability rights activist Satender Singh, who is also a member of the State Steering Committee on Accessible Election (SSCAE), has charged that the practice of labelling some categories of persons with disabilities as having “unsound mind” was unjust.

“Persons with psycho-social disabilities [mental illness] and intellectual disabilities [mental retardation, learning disabilities, autism, etc.] have equal voting rights, but because of ignorance and poor awareness they are excluded from the electoral process,” he said.

Stating that “neither the EC nor the CEO is the competent authority to declare a person or voter being of unsound mind,” he insisted that only a competent court could certify someone as such after due process.

“If anybody – irrespective of having a disability or not – is certified as being of unsound mind by the competent court, the respective person will not be allowed to vote by the EC. Otherwise, everyone has the right to be enrolled and vote, and this includes people with intellectual and psycho-social disabilities.”

Singh also suggested to the SSCAE that to enhance the electoral participation of persons with disabilities, the “state icons” be chosen from among them.

He said the selection would be easy as the Department of Social Welfare in Delhi, every years felicitates outstanding people with disabilities with state awards. And so, from among them the state icons may be selected.

‘Resume data collection on persons with disabilites, have special enrolment camps’

Singh has also demanded that the practice of gathering elector data – disaggregated into all 21 types of disabilities, as per the Rights of Persons with Disabilities Act, 2016 – be resumed. It was discontinued after the 2014 Lok Sabha elections, despite being mandated by the EC.

He said the committee has also been urged to organise repeated special voter enrolment camps for persons with psychosocial and intellectual disabilities living in residential areas, rehabilitation centres and places for homeless people.

The state-level committee was constituted by the EC to have polling station-wise mapping of disabled electors, facilitating their enrolment and for creating a barrier-free environment for their participation in elections. These committees have also been mandated to train election functionaries on special needs of persons with diabilities.

Also read: The Disabled as Vote Bank: Is it an Oxymoron?

Several steps initiated, more needed

Since 2009, the EC has set up systematic voters’ education and electoral participation (SVEEP) to facilitate voting by all citizens, including persons with disabilities. On National Voters Day this year, it declared ‘Accessible Elections’ as the theme for 2018.

A number of steps have been mandated to encourage persons with disabilities to vote. These include adding Braille to electronic voting machines, constructing ramps at polling stations, and offering disabled voters priority entry to booths and wheelchair facilities. Even so, many people with disabilities remain uncovered.

India Has a Long Road Ahead to Combat Challenges Faced by Persons With Disabilities

There needs to be a shift from a charity-based approach to a rights-based approach.

World Bank data on the total number of disabled in India suggests the number to be between 40 to 80 million. Credit: Reuters

December 3 is a significant day for millions of persons with disabilities across the globe. It has been marked as the International Day of Persons with Disabilities by the United Nations since 1992. It has been more than 25 years since the United Nations General Assembly adopted the Resolution 47/3, to mark this day.

As per the United Nations, “the aim behind the annual observance of this day is to promote the rights and well-being of persons with disabilities in all spheres of society and development; and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life.”

Disability in India

Today, there are millions of people living with one or multiple disabilities. In India, the population with disabilities is around 26.8 million, constituting 2.21% of India’s total population, if one goes by the 2011 population census data. Disability rights activists and academicians working on disability issues, however, say that these numbers in the census are a very small percentage of the actual numbers. World Bank data on the total number of persons with disabilities in India suggests the number is between 40 and 80 million.

Whatever the difference between official figures and figures estimated by global institutions, what is clear is that persons with disabilities constitute a significant part of the Indian population. Their numbers are more than the total population of many countries in the world, and India has one of the highest numbers of people with disabilities globally.

Despite constituting such a significant proportion of the total population, persons with disabilities live a very challenging life. Their ‘disability’ is often seen as their ‘inability’ by many and people in general have preconceived notions about their capabilities. There have been many cases where employers have denied a job to a candidate with a disability, citing the usual ‘not found suitable’.

The main problem lies in the psyche of a significant mass which considers persons with disabilities a liability, and this leads to discrimination and harassment against them and their isolation from the mainstream.

While writing the foreword to the World Report on Disability 2011, professor Stephen Hawking stated:

Disability need not be an obstacle to success. We have a moral duty to remove the barriers to participation, and to invest sufficient funding and expertise to unlock the vast potential of people with disabilities. Governments throughout the world can no longer overlook the hundreds of millions of people with disabilities who are denied access to health, rehabilitation, support, education and employment, and never get the chance to shine.

Ideally, these words should be put into action by governments all over the world, and some progressive countries have taken action to make life easier for their citizens with disabilities. India still lags behind in a big way when it comes to removing infrastructural, institutional and attitudinal barriers for the persons with disabilities. Even now, most buildings in India are not disability-friendly, despite the government of India, under the Accessible India Campaign, instructing all ministries to make their buildings accessible to persons with disabilities.

Also read: When ‘Looking Disabled’ Is an Option, and When It’s Not

It is a welcome step but it will take a lot of time for a culture to be developed in India, where the needs of the population with disabilities are kept in mind while building any infrastructure. Historically, people with disabilities as a community have been targeted and discriminated against across the world. In fact, if one looks carefully, the population with disabilities constitutes the world’s largest ‘unrecognised minority’ group.

Who is a person with disability?

The most important element in the discourse on disability is to assess who is a person with disability. Disability is not a homogeneous concept, as it varies from person to person. Seen through a microscopic lens, one person will always be more or less disabled than the other, in terms of their relative physical capabilities.

The Social Statistics Division under the Ministry of Statistics and Programme Implementation, government of India, came up with a report titled Disabled Persons in India: A statistical profile 2016. While defining disability, the report states:

From the conceptual point of view, there is no universal definition of what constitutes a disability or of who should be considered as having a disability. Moreover, there is no one static condition of disability. A disability is a result of the interaction between a person with a health condition and a particular environmental context.

This report reveals that as per 2011 population census, 20% of persons with disabilities in India have a disability in movement, 19% have a disability in seeing, 19% have a disability in hearing and 8% have multiple disabilities. The report also highlights that the number of persons with disabilities is highest in the age group 10-19 years (46.2 lakh people).

The United Nations Conventions on the Rights of Persons with Disabilities defines disability differently. It says:

Disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others. Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

The World Report on Disability 2011 sums up the various definitions of disability by stating that “Disability is complex, dynamic, multidimensional, and contested”.

Why is there such a large population of persons with disabilities?

As one looks at the staggering number of people with disabilities in India, the first question that comes to mind is why are the numbers so high? And can they be reduced?

Despite constituting such a significant proportion of the total population, persons with disabilities live a very challenging life. Credit: Reuters

Disability is generally classified into two types. One is when a person is born with a disability while the other is when a person acquires a disability during his/her life. In the first case, the reason is often the lack of good and accessible medical facilities, resulting in various medical complications for both the pregnant mother and the unborn child, often leading to a disability for the child.

Another reason is the lack of care given to pregnant mothers during pregnancy. Data on disability points to a correlation between ‘disability’ and ‘poverty’. A large number of people with disabilities are born in to poor households. This is not just a mere coincidence. This is due to the fact that pregnant mothers have to work until the very late months of their pregnancy under very harsh conditions to make ends meet.

This lack of care due to systemic fallacies leads to medical complications during pregnancy leading to the birth of children with disabilities in many cases. The population census data 2011 also points out similar trends when it says that 69% of the total population of persons with disabilities in India resided in rural areas. This again not a coincidence – it is primarily because of lack of awareness, lack of care provided to pregnant women and lack of good and accessible medical facilities that the number of persons with disabilities in rural areas is more than double the number in urban areas.

So, a large percentage of the population with disabilities can be reduced if two out of three listed causes for child births with disabilities can be eliminated. The first being lack of awareness and care to pregnant mothers and second, the lack of good and accessible medical facilities across the rural heartland. For eliminating both these barriers, the state governments need to invest heavily in their health sector as health comes under the ‘state subject’ in our constitution.

It is the third listed cause that is the real challenge for any government – the fight against poverty. It is poverty that forces a poor pregnant woman to work in the late stages of her pregnancy. Poverty provides a ripe ground for the birth of persons with disabilities – both during and after.

The other type of disability, as discussed above, is acquired disability. This could happen due to various reasons including accidents, disasters, wars, violence and other factors. All these are “controllable” (except natural disasters). Every year thousands of people acquire permanent disability in road accidents; and the individual’s – as well as the nation’s – physical potential gets reduced.

The way ahead

The first thing to be done is to move away from the ‘charity-based approach’ to the ‘rights-based approach’. A significant proportion of people see a person with disabilities as an object of ‘sympathy’ and ‘pity’ thereby leading to their ‘othering’ and their treatment as a third-class citizen in the country.

This is not just a metaphorical statement. When was the last time India had a celebrity with disabilities or a person with disabilities was recognised popularly?

This is because of systemic attitudinal apathy and discrimination against persons with disabilities as many able-bodied people are just not ready to see a person with disabilities as an ‘equal member’ of society.

The identity of such a person is therefore often left to just being a person with disabilities in the eyes of the rest. In recent years though, the discourse of disability has certainly gained momentum. In the public sphere, movies and TV news channels have highlighted issues of disability. Actors have played the roles of people with disabilities in films and news channels have had shows on disability.

Also read: What India Needs to Learn About Disability Rights

But does anyone remember a movie or an advertisement where the lead actor was a person with disabilities or a news channel anchor with disabilities? Again, this is a tough and uncomfortable question to answer. Only when we, as a society, have positive answers to these questions, will the narrative on disability change for good. Merely using the word ‘divyang’ or ‘differently-abled’ won’t change the psyche of the masses towards persons with disabilities.

Rights to Persons With Disabilities Act, 2016

It has been almost a year since the government of India came up with this landmark act on disability which increased the number of disabilities from seven to 21. This act which replaced the earlier Persons with Disabilities Act, 1995 has also increased the quota of reservation for persons with disabilities from 3% to 4% in government jobs and 3% to 5% in higher education institutions.

All this looks good on paper. A lot of posts, especially in group A and group B services in the government, continue to lie vacant. And it is the same in higher education institutions. In both cases, the typical answer is given by authorities is that they couldn’t find any ‘suitable candidate’. This answer is a face-saving attempt by the authorities, and could be right in only two instances.

One, if the Indian education system is proving itself incapable of producing candidates with disabilities who possess essential educational qualifications to sit for an exam for a particular post in a government job or higher education. Secondly, if due to systemic discrimination, the employers are just not interested in recruiting a person with disabilities.

Both cases are shameful, if true. Since the inception of Rights to Persons With Disabilities Act, 2016, there have been many instances of faulty implementation of disability reservation. The new act can only be successful if there is a genuine ‘intent’ to recruit persons with disabilities.

To sum up, International Day of Persons with Disabilities on December 3, 2017 should not be just another day where various workshops, talks, seminars and events are organised on the issue of disability. The idea should be to reflect on where we have been going wrong as a society with respect to citizens with disabilities and how these wrongs can be undone.