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Wither the poor disabled tucked in the corner of their houses…

By Deepa Sonpal

It is a widely accepted fact that persons with disabilities are among the poorest of the poor, with about 70 million residing in India, out of which 50 million are profoundly isolated and confined to the home. Persons with disabilities are not part of the informal economy and rely entirely on benefits from schemes to survive. The recent World Social Protection Report on Building Economic Recovery, Inclusive Development, and Social Justice 2014-15, published by the International Labour Organisation (ILO), lays emphasis on social protection and security for realising the human rights, to reduce poverty, inequality, and injustice, discrimination and promoting inclusive growth/ development. Limited access to social protection and security are a major barrier to economic and social development. Only 27 per cent of the world’s population enjoys access to full social protection. Persistent low coverage of these benefits, especially among persons with disabilities, results in restricting their engagement as productive/ contributing members of society. Hence, the policy environment should aim at engaging the maximum number of persons with disabilities in gainful and sustainable employment. With globalization and shrinkage in formal economies, largely, the unskilled or semi-skilled populations are caught up in the informal sector with limited guarantee to gainful employment and livelihood.

Ironically and painfully so, the low emphasis on social protection and social security of persons with disabilities, in all the series of consultations on the Rights of Persons with Disabilities Bill, be it the 2011 version, drafted by the so-called expert committee on disability, or the 2012 version uploaded by the Ministry of Social Justice and Empowerment or the 2013 version that was placed in the parliament, sets one thinking!  On critically analyzing, I wonder if we are/were even thinking about the multitude of the disabled who have no voice and are being subjected to sub-human living conditions. Persistent feedback to the disability advocates sees limited registration and action into strengthening this section on Social Protection and Security that persistently views the disabled as objects of charity and recipients of petty benefits.

We need to look into the section on social protection in the RPDB and make it the basis of strengthening the disability community, for it is the collective, comprising of all persons with disabilities, that needs to be emancipated as a lot. A few powerful and well placed individuals with disabilities may leave a mark in history, but they are not in a position to change the face/fate of the majority. More and more emphasis needs to be put on how to enable uneducated, semiliterate, and low-skilled persons with disabilities become part of the mainstream development process. It needs to be continuously explored how the skills of such individuals could be harnessed to make them contributing members of our society that would reduce the poverty gaps and promote inclusive growth. The United Nations Convention on the Rights of Persons with Disabilities is a strong human rights treaty that particularly aims to protect the human rights of all persons with disabilities.  It is up to individual country representatives and disability rights advocates to dive deep into the existing conditions and lived realities of persons with disabilities, living in remote regions of the country, and then frame policies that will collectively emancipate us as a community.

The degeneration of values in modern society is more evident when we are each trying to look at policies from the individualistic perspective of a particular disability type.  Lobbying, stressing, fighting, and shouting out our lungs regarding how she is being left out and excluded and working out ways how she will be able to make a name for myself as a savior of the disability community. Is it possible for the educated, so-called elite, more fortunate persons with disabilities, to forget what she will get or want or what persons for a specific disability would gain or lose, and think about the poor voiceless disabled in our country? Is it possible for poor communities to furnish a disability certificate that is mostly issued at the district or state levels? Is it possible for poor families to bring persons with disabilities to these locations only to be abused by the health professionals?

We are often treated as if we have committed a crime or a bad deed either in this life or previous lives. So much so that we cannot even be examined/treated with a compassionate and humane touch. As if this is not enough, to get access to a certificate that declare us as 40% disabled, we have to produce other certificates, too, such as an Identity Card, Income Certificate and Below Poverty line card, railway concession form etc. Mind you, each of these requires a separate process. Under the circumstances of a multitude of barriers, how is it possible for a poor disabled person to obtain so many certificates/proofs, to avail our entitlements, when we are not even being able to walk out of my house?

The questions to ask ourselves is: why can’t we come out of these medicalised terms of classifying our disability type and the percentages by a so called qualified doctor and have the choice of registering our disability at the panchayat level itself the way we do birth and death registrations. We should be the one to decide if we need the benefit of a scheme or not. We should be the one to claim my entitlements with wisdom, while maintaining my self-respect; we will certainly not claim what is not our right or does not lend us a life of dignity. It is disheartening to witness policy decisions such as the Socio-Economic Survey that mentions that the poor disabled persons living with able-bodied persons would not be considered to benefits entitled to persons Below Poverty Line. Now, which disabled person in our country would be living on their own with a legacy of communities accommodating vulnerable members like the disabled, orphan children single, and widow women in whatever condition? As a mid-way progressive states campaigned for disabled persons to declare themselves as a single unit but information percolation was largely miniscule.

Another crucial aspect that is probably overlooked or less understood is that of political representation which, if formulated and implemented in the true spirit of empowering the disabled and including their perspective in the decision making process, will lend more visibility to the disability sector.  It is not enough that we have access to accessible voting booths and voting machines, but we need to move beyond the first level of political participation. Primarily, we need to collectively assert our voting rights as citizens of this country and have access to voter identity cards that guarantees us the rights of citizens in the country.  It is not that if we have a disability certificate all our miseries will end or that we will be able to access our entitlements as well as our rights. But first and foremost, we need to be acknowledged as citizens of this country and establish our identity to represent politically and stand for elections. Ideally, we should be struggling and protesting for reservation and in the electoral process, advocating with political parties for including our demands/concerns in their manifestos and as responsible citizens demonstrating or setting an example to the community about the potential we have as contributing members. Such an approach may compel us to look beyond legal legislations and policies, press for moving the agenda for constitutional amendments, and build a more equitable future for the coming generations. This logically demands the strength of numbers and, to gather strength, we need to not only pull out disabled people compelled to reside within their homes for complex and multiple reasons, and pressurize for proper and more accurate enumeration on the prevalence rate of disability. Disability advocates need to rethink and re-strategize for reaching out to the last mile among persons with disabilities.

This piece is to be treated as one that is intended to provoke thoughts and not to undermine other pressing issues that are being debated around the bill. Without our collective strength, individually, we are powerless and will not reach our objective of enabling persons with disabilities to live a life of dignity, where we respect ourselves and also demand/command respect from others by fulfilling our duties and responsibilities as citizens.


Deepa Sonpal is Programme Coordinator with Unnati Organisation for Development Education, Ahmedabad. She is a development educator and researcher on social inclusion of vulnerable sections, poor, dalits, women, tribals, and persons with disabilities. Deepa is engaged in building civic leadership, social accountability, governance and disaster risk reduction with development actors.


For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.

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