E-Kantipur

This June, Nepal celebrates the centennial of the population census taken every ten years. The eleventh population census will be held from June17-27. A census is an essential tool that serves, by collecting data population, to plan and guide state policies. It is, therefore, a time for everyone to stand up and be counted.

As the date for the census approaches, however, I am deeply troubled by the status of people living with disabilities (PWDs). Like in the past, there is a fear that most of the PWDs (over 95 per cent) will not be counted. There is evidence that in every society about 10 percent populations have some kind of disabilities. In fact, the latest report jointly released by WHO and World Bank, the World Report on Disability, estimates that more than a billion people worldwide experience disability. The report suggests that 15 percent of the world population is living with disabilities.  

In poor countries like Nepal, the total number of PWDs can go higher than 15 per cent. But one wonders where these people live. The sad truth is that many PWDs are locked in home and custody. Even in the educated families, PWDs become victim of family neglect, stigma and isolation. As a result, families hide their member with disability from outsiders, which means that they are not included in the census.  

For instance, in the last population census in 2001, government records the number of PWDS as 0.64 per cent of the total population. The statistic is a shameful lie. However, the government should not be blamed for this. It is the public attitude that looks at PWDs as an outsider at home and community which prevents them from being counted.

Determining the real number of PWDs in Nepal is not an easy task, primarily because disability awareness is very low. Social stereotypes and attitudes discourage individuals and families living with disabilities to confront the issue. They do not feel comfortable talking about the problems they face, preferring to hide the PWDs from others. One after another, the national censuses have reflected such social mindset that contributes to making PWDs invisible and undercounted.

In documenting PWDs, one of the shortfalls of the disability sector is the lack of academic institutions that focus on quality research that provides a clear picture. There is no single academic course on disability with our universities. The exclusion of such a sensitive issue from the academic industry puts us in disadvantage situation in our efforts to counter social stereotypes, language, negative imagery

and attitudes imposed on PWDs. The lack of research goes hand in hand with the lack of realisation that knowledge and attitudes are important environmental factors that affect all areas of service provision and social life.

Because our government bodies function with inadequate knowledge, there is rampant negligence in treating PWDs. Even donor agencies that fund to protect and promote the rights of PWDs fall short of fulfilling their responsibility.

Last week, a colleague, Nir Prakash Giri, brought to my attention some promotional materials (pamphlet and brochure) from the Central Bureau of Statistics (CBS) targeted at the disability community. The goal of the material was to promote inclusion of PWDs in the census, but seeing images and language used to portray disabled communities was shocking. In the pamphlet and brochure, thousands of copies of which were already published, mental disability, particularly, is portrayed in a violent and a cruel way. In defining the mental disability, the most degrading and unsympathetic words like “mad, cynical and crazy people” is used.

When I asked CBS about the unjust depiction, this is what they told me: “All the materials for print were prepared by National Federation of the Disabled Nepal (NFDN), an umbrella organisation representing the Disabled Peoples’ Organisations (DPOs) working for the cause of disability across the country. CBS is not responsible for the content.”

This kind of excuse is not unusual in this country of ours. But I could not stop there. It was a serious blunder committed by CBS and NFDN. To get to the truth of the matter, I contacted Birendra Raj Pokharel, the President of NFDN. At first, Pokharel was not ready to accept the description as a mistake. When I read for him the definition of mental disability (as described in the brochure developed by NFDN, which says, “people who are mad, has gone cynical or show strange behaviour are to be counted under mental disability”), he replied—”I was against this definition but CBS wanted such language”.

The response was rubbish and it worried me: NFDN had already created a big problem. In printing brochure and pamphlets, the donors spent a large amount of money, but the message the brochures send is damaging. And it happened as a result of the uncoordinated action of NFDN. While developing the message and the imagery, NFDN could have consulted with stakeholders working in the mental disability rights sector. Tragically, NFDN did not feel it worthy to co-operate with others. Let me state it again. The pamphlet and brochures violate human rights of PWDs by sending damaging messages. It would be better for CBS and NFDN not to distribute such materials. It is against the principles which seek to “to promote and respect the inherent dignity for PWDs”.

In the future, NFDN, government bodies, CBS and donor agencies involved in the disability sector should be careful when developing communication messages that affect millions of lives.

Here’s my appeal to the readers: PWDs are not violent. Instead, they are the victims of social ignorance. It is vital that PWDs are counted properly in the census to stop exclusion and discrimination and to develop appropriate policies and programmes. For this to happen, a positive role from individual, families and community is essential. Finally, I encourage PWDs to stand up, be visible and be counted.

jagannathlc@gmail.com

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