Activists / Doctors / Researchers

Tom Shakespeare, Dr. Padmani Mendis, Dr Firdosi Rustom Mehta: Learning from the first World Disability Report

The Indian government wanted its disabled citizens to vote. Faced with mounting social pressure, leading parties were debating disability issues in their stump speeches, vying for votes. Here was a departure from business as usual – the Disability Act, passed in 1995, guaranteed equal opportunities to disabled people but little had come of it.

Tom Shakespeare: In Colombo for the launch of the report

Now, in the run up to the 2009 elections, an order passed by the Supreme Court finally forced the Election Commission to contact the State Governments and Union Territories with a list of requirements.

Ramps would be installed in polling stations, braille numbers would be placed alongside ballot buttons on Electronic Voting Machines, separate queues would be set up for disabled people at polling stations and not least, electoral staff would be trained to interact with disabled voters. Indian citizens – even if they were in a wheelchair – could cast a vote.

This success story has Dr. Padmani Mendis, an independent disability issues expert, asking one question – “If India could do it, why can’t Sri Lanka?” Dr. Mendis who is currently consulting for the World Health Organisation (WHO) is one of the key figures on the team drafting a National Action Plan on disability and part of her mandate has been to find practical ways of implementing the recommendations put forward by the first World Disability Report.

Though it has had less ambitious predecessors, the report produced by WHO and the World Bank is unique in its comprehensive approach to addressing the issues concerning the ‘world’s largest minority.’ It took the contributions of 370 writers, a price tag of over a million dollars and a four year gestation period to produce it.

“The World Report on Disability is the first of its kind, providing global guidance on implementing the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and giving an extensive picture of the situation of people with disabilities, their needs and unmet needs, and the barriers they face to participate fully in their societies,” Dr Firdosi Rustom Mehta, Country Representative, World Health Organisation, told the Sunday Times in an email, adding that any national plan would be in line with national policy as well as the World Report on Disability.

That it is an issue of national importance is undisputed – not least because the numbers say so. “One of the headlines was that there were a billion disabled people in the world,” says Tom Shakespeare, who contributed to the report and was a member of the Editorial Committee. Tom, who was in Sri Lanka to launch the publication, explains that the numbers are rooted in an analysis of the World Health Survey (2002–2004). By these figures, around 15% of any country’s population could be considered disabled. Whether it’s a diabetic with an amputated leg, a child with juvenile arthritis or a soldier with PTSD, we’re also learning that disability takes many forms. “It’s higher than people thought,” he said. Now, it’s becoming clear that the 15% will only increase as an aging population begin to experience more disabling illnesses.

Accepting that the disabled may constitute a larger percentage of the population has added to the momentum driving a new approach to managing it. Tom hopes to see the numbers have a profound impact on policy makers: “Look, it makes sense to have an accessibility standard and to enforce it because that will benefit 15% of your population; to have non-discrimination policy in the work place because that will benefit 15% of your population. It’s not a small figure. It’s a significant figure.” Dr. Mendis agrees: “We in Sri Lanka have a tradition of segregated services and we’ve done well with them,” she says, pointing out that for instance, the island has had schools for the blind since the early 1900s. “We have had these segregated services and we have showed our concern for disabled people through that.”

Now mainstreaming people with disabilities is the new goal– luckily in Sri Lanka some of the infrastructure is already in place. Dr. Mendis uses the example of vocational training centres – while only a few have been dedicated to disabled people, a much larger network already serves the able-bodied. “Now we know the way to go is that we have a huge network of vocational training centres for our youth, our public. We have to open those to disabled people as well,” says Dr. Mendis. This mainstreaming needs to spread to every level of policy making.

“Everybody is still talking about the millennium goals – and whether it’s reducing child mortality or ensuring every child goes into primary school, there’s a need to include disabled people,” says Tom. “You can’t achieve a lot of these goals without disabled people.” Even when it comes to preparing for disasters, authorities need to be sensitised to plan for the needs of disabled people. This would include not just how to evacuate them but attention to details such as toilets for the disabled in shelters and ensuring that disabled aren’t overlooked when food is distributed.

Many of these goals can only be achieved by enlisting the community – but attitudes will need to be changed first. “Social attitudes are the biggest barrier,” says Dr. Mendis, citing superstitions that declare it unlucky to see a disabled person as soon as you step out of the house or to include a disabled person in a wedding party. “These are social attitudes out in society that stigmatize, but within the family it’s completely different,” she says, explaining that families often end up stifling their disabled members in an attempt to protect them and may even ill treat them out of ignorance. However, she believes that even this trend is changing. “Parents are beginning to realise that for the disabled child, education is essential.”

While over 90% of children in Sir Lanka go to school, the figures for disabled children are much lower says Tom: “People with physical disabilities – 77%. People with intellectual disability about 50%.” However, inclusive education isn’t a pipe dream for a developing country after nations like Laos and Vietnam have done well, once more begging the question – ‘why not in Sri Lanka?’ “It’s possible to do it,” Tom asserts. “It’s accessible schools, trained teachers and the right attitudes; a lot of it is about attitudes.”

The report also celebrates the times that countries have got some things right – whether it’s Uganda that has enshrined disability rights in its constitution and has people with disabilities represented at every level of the political process or Delhi metro in India’s capital which incorporated features of universal design (also known as barrier free features) in the planning stage at little extra cost. Nigeria has focused on providing microfinance, so that persons with disabilities can develop their own businesses. “If a person has the wheelchair they need, they can be productive, they can get a job. They can contribute to the economy. There may be a short term cost, but there’s a long term gain, says Tom, but he adds, “No country has got it completely right.”

Today, people with disabilities are 50% more likely to slip below the poverty line as their health costs often outstrip their incomes; disabled people are far more likely to be victims of violence, to be denied healthcare, education and even the chance to have a family of their own. Tom who authored ‘The Sexual Politics of Disability’ says that while Article 23 of the UN Convention on the Rights of Persons with Disabilities talks about the right to a family life, social prejudice can leave disabled people terribly isolated. “But in fact, most disabled people can have sex, can have children, can have normal family lives. It is prejudice, as in other areas, which prevents people.”

Going forward, the National Action Plan on Disability which was prepared in collaboration with disabled people and the representatives of ministries of social services and health, will look at ways to implement the report’s recommendations. “What the world report has done really is to reaffirm and to show us the importance of bringing disabled people into the mainstream in terms of human rights,” says Dr. Mendis, hoping that by the end of this process Sri Lanka will have an “overarching policy on disability” in place.

Highlights of the World Disability Report

2012 saw the launch of the first World Disability Report in Sri Lanka. Successive chapters in the World Report document data, health, rehabilitation, assistance and support; enabling environments; education and employment. For each area the report highlights a range of good practice examples which governments and civil society can emulate, to help establish an inclusive and enabling society in which people with disabilities can flourish.

According to Dr Mehta, the main message in the World Disability Report is the need for disabling barriers to be broken down. In addition, the report highlights:

  •  One billion people with disabilities in the world have the right to participate fully in their societies.
  • People with disabilities can live independently in their communities
  • All children have the right to education
  • People with disabilities have the right to decent work
  • The development and enforcement of legislation on accessibility is required
  • Better access to free and affordable health care needs to be provided
  • Rehabilitation promotes the participation of people with disabilities in their societies

Published in the Sunday Times, Sri Lanka on Sunday 17, 2012. Words by Smriti Daniel. Pix courtesy Dr. Padmani Mendis. 

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