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Culture of Silence Around Disability Influences Bad Policy


BENGALURU: Disability in India has long been misunderstood and persons with disability in India for decades now have lived on the fringes of society – excluded, marginalised and discriminated against. Persons with disability (PWDs) have and even today continue to fight for basic rights to education, to be heard, to have a say in their treatment/ rehabilitation, for legal capacity and accessibility.

The lack of awareness regarding the causes of disability and the various kinds of it makes matters even more difficult. There has long been a culture of silence surrounding persons with disability/ mental illness. This culture of silence often even translates even into policy decisions.

In the 2011 census for the first time persons with disability were accounted for; even though India had ratified the United Nations Convention on the Rights of Persons with Disability (UNCRPD) in 2007. While the 2011 Census claims that the disabled population of the country is 2.1 %, many experts and those who have worked in the field – nationally and internationally – have their doubts about the figures.

As a developing nation, there is a lot of work that needs to be done in India with regard to disability/ mental illness. Poor awareness and stigmatisation make it challenging given how poorly understood the both are.

In addressing Disability and Mental Health, perhaps the first battle would be to spread awareness and change perceptions about both; creating accessible spaces would be something that would have to happen along side. For a country that faces a plethora of challenges for integrating its citizens with mental illness/ disability, we are doing very little.

The discourse on Disability in India is outdated and still on the lines of the medical model, which perceived the individual as the problem; however, the world, with the UNCRPD has long moved on from that paradigm to the Rights based model. The recent approval received by the government of India from the President to incorporate the word ‘divyang’ (divine body) in the Hindi and English nomenclature of the Department of Empowerment of Persons with Disability received strong opposition and protest by persons with disability. And is a fine example of how ill – informed the discourse on disability and mental health is.

Instead of addressing issues of awareness, rights and accessibility, the government is busy changing terminology – which has been rejected by disability groups across the country. While the rest of the world seems to be taking on the Rights based approach, India is still viewing disability/ mental health from the Charity based perspective. There is little or no recognition of the personhood and agency of individuals with disability/ mental illness.

It was during the early Christian doctrine that having a disability/ mental illness was believed to be a means of purification. The world has moved far ahead in its understanding of disability and mental health since; but one is unsure if the same can be said about India. We still seem to be stuck in the era where having a disability/ mental illness is understood as the person being possessed by an evil spirit or paying the price for past sins.

Despite having ratified the UNCRPD, India has done very little to implement its provisions, rather it seems to be going in the opposite direction. The usage of the term ‘divyang’ is against the provisions of the UNCRPD which lays emphasis on the usage of person first language.

The usage of ‘divyang’ is really a reflection of the larger problems of Indian society in how it understands and perceives disability and mental health. It is ironic that PM Modi is referring to persons with disability as ‘divine’, in a country where persons with disability are denied entry into religious spaces, are unable to visit them due to inaccessible infrastructures; ill – treated; abandoned; kept chained in their own houses and in institutions like in Erwadi – where 28 chained inmates died in a fire which broke out or performed mass hysterectomies upon without consent, like it was done in the Shirur home for the mentally challenged.

PM Modi’s much publicised ‘Accessible India Campaign’ is merely old wine in a new bottle. Instead of improving the lives of persons with disability/ mental health, the very first move under this campaign of replacing ‘viklang’ with ‘divyang’ has done immense damage and taken the conversation around disability back by a good 100 years or more!

Apart from the change in terminology, there is nothing new that this campaign offers – the schemes for persons with disability which are being spoken off are the same as those that have been there. There is nothing new that the campaign offers apart from the damaging and retrogressive change in terminology.

Given than the Rights of Persons with Disability Bill, 2014 and the Mental Health Care Bill, 2013 are still sitting in parliament waiting to be discussed is a good enough indication of the State’s will to address issues of person with disability and mental health. Instead of engaging with persons with disability and disability rights groups we have had government officials come out and make irresponsible and damaging statements based on pre – existing stereotypes which have for decades now led to the systematic exclusion of persons with disability and mental health from mainstream society.

In January, Maneka Gandhi, member of the Group of Ministers (GoM) examining the Right of Persons with Disabilities Bill, 2014, raised questions about the ability of persons with Schizophrenia to hold a job. Her statement caused a huge uproar among Disability Rights groups. She later went on to say that she did not expect her statement to cause such uproar; and in one of her later statements in response to an open letter mentioned that she was unaware of what the UNCRPD is and its provisions.

It is surprising that laws and policies are being reviewed by individuals, who know and understand so little about disability and mental illness; who fail to do their home work or know that there is an International Convention which the country has ratified. Such apathy along with ill – informed and irresponsible statements made by office bearers have huge implications in a country where persons with disabilities already face so many challenges.

Despite widespread opposition, protests, open letters and online petitions from several sections of civil society, persons with disability/ mental illness and disability rights organisations the Government of India has gone ahead and incorporated the word ‘divyang’ ( divine body) in the Hindi and English nomenclature of the Department of Empowerment of Persons with Disability. It is a fair indication that we live in society where the voices of persons with disability/ mental health have never been heard.

Already far from being an inclusive society where persons with disability/ mental illness are given their rights, empowered and heard; such policy decisions makes you wonder whether we are working towards systematic inclusion or exclusion based on wrong and stereotypical notions.

When so much work in needed on the ground in the areas on rehabilitation, stigma, discrimination, empowerment, accessibility, etc., this regressive change in terminology is nothing but a damaging eye wash. Perhaps, if PM Modi and other policy makers chose to hear the ‘Mann ki Baat’ of others instead of just making his own heard, there could be hope for persons with disability/ mental illness to live better and more dignified lives; instead of being called ‘divine’ and then being treated as second class citizens or worse living on the fringes of society.

(The writer has a Master’s in Social Work in Disability Studies and Action. She is employed as Advocacy Officer at the Concerned for Working Children in Bengaluru)

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