Politics of Disability Estimates in India: A Research Note

Introduction

The phenomenon of disability is one of the pressing problems in the world. According to the projections of international agencies, about 10 per cent of the population are affected with physical, mental, sensory and other forms of impairments and around 75 per cent of the disabled population are concentrated in the rural and inaccessible areas of the developing societies. This data is based on recent studies carried out in various developed and developing countries as also corroborated by the UN and other international agencies. (Mont 2007:2) Being one of the most impoverished regions, the Indian subcontinent has a huge number of persons—constituting around 10 per cent of the total population—incapacitated by various forms of disability. The close and vicious interlinkage between disability, poverty and illiteracy has further aggravated the problems and barriers faced by them in their routine lives (ranging from architectural and educational to vocational and insensitive social responses) and social interactions.

There was a wave of disability rights movements across the globe in the decades of the 1970s and 1980s. Significantly, under the aegis of the United Nations and its plethora of agencies, a range of national level disability related initiatives have been taken during the past few decades in many developed and developing countries (including India) with a view to ensure equalisation of opportunities and full participation for persons with disabilities through specially enacted disability related legislations. One would, however, find certain discrepancies and contradictions in all such legal documents as also policy papers. Briefly stated, semantic or typological differences, under- or over-representation, preponderance of charity and welfare approach over rights-based approach and disruption of the disability rights movement in India are the major factors not only interrupting the process of development of a sound disability policy but also creating a rift between organisations of and for persons with disabilities.

In the absence of a clear-cut roadmap and strategy, the disability rights activists failed abysmally to raise their voice for achieving the goal of securing social justice, equalisation of opportunities and full participation in India. This failure could also be attributed to intense internal rivalry and cut-throat competition among the disability rights activists. The reasons are not far to seek. The compartmentalisation of approach as also mutual distrust between various typologies of the persons with disabilities could be cited as glaring reasons for the marginalised status of disability politics in our country. Hence, persons with disabilities and disability organisations have failed to coalesce, together and form themselves into a cohesive, powerful pressure group for ventilating their common grievances.

Urging for the Rights of the Disabled

Here it is worth noting that society at large seems to be so confused and messed up; on the one hand it talks about the rights of the persons with disabilities while on the other hand it is inclined to perpetuate the tendency of doling out charity and welfare benefits in the guise of rehabilitation to persons with disabilities. One must realise that rights and charity don’t go hand in hand. Persons with disabilities, for this reason, must be distin-guished from those people who face temporary hardships due to climatic/ natural and social hazards like flood, drought, war and displacements etc., those who need immediate rehabilitative support through government relief funds (such as the Prime Minister’s Relief Fund or National Relief Fund) and other aids and donation schemes. Rather, there should be a well-planned comprehensive plan of action targeted at facilitating total empowerment of millions of persons with disabilities.

Thanks to the efforts of the global disability rights movement, there has been a remarkable change in public perception towards disability from the welfare and charity-based medical-clinical paradigm to the rights-based paradigm. This new rights-based paradigm has shifted the debate away from the welfare approach and consequently the problem of disability is now overwhelmingly viewed as a human rights and developmental issue. Viewed from this stand-point, the problems and barriers encountered by the disabled in their day-to–day lives are basically the outcome of denial of or infringement on their basic human rights. The onus of creating and aggra-vating the disability situation lies on the society rather than the human body.

Politics of Disability Numbers in India

Insofar as the issue of inaccuracy of disability data is concerned, the Census of India (2001) and the 58th Round National Sample Survey (conducted by the National Sample Survey Organisation of India) present the respective figures of 2.1 per cent and 1.85 per cent for persons with disabilities. (Government of India 2001) However, according to a recently released World Bank report (prepared at the request of the Government of India), the number of persons with disabilities are reported to be in the range of four to eight per cent of the total Indian population. (The World Bank 2007:xx) Definitional and typological divergences between the Census of India and the NSSO measurement scheme have culminated in ambiguous data collection on disability in the country. (Mitra and Sambamoorthi 2006) Moreover, improper mechanism, untrained enumerators and societal stigma/ prejudices are normally identified as the determining factors for misrepresentation of the disability estimates. (Jeffery and Singal 2008)

One should also not ignore the discrepancies between the Census and NSS regarding the criteria adopted for enumerating persons with disabilities as also the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (normally referred to as PwD Act). The PwD Act, which spearheaded the formal campaign for empowering persons with disabilities, could also be faulted on various counts: it includes only seven denominated types of disability and fails to encompass within its ambit other forms of disability such as cerebral palsy, muscular dystrophy and autism etc. (Government of India 1995; The World Bank 2007: xx) Moreover, certain terminologies used in the PwD Act are also not in consonance with the ethos of the disability rights movement.

Significantly, even the policy-makers seem to be confused and messed up with the government enumeration. Under the provisions of affirmative action/protection, reservation quota is given in proportion to the population of the deprived sections like SCs and STs. But it is incompre-hensible on what basis government has provided not less than three per cent reservation for persons with disabilities (Government of India 1995: Chapter VI-Employment) (although it is in the interest of persons with disabilities), because the government enumeration (that is, 1.85 per cent and 2.1 per cent) is close to two per cent rather than three per cent. Also, if three per cent reservation is given out of welfare or charity, then it is contrary to the provisions of the PwD Act, 1995, which talks about empowerment of persons with disabilities based on human rights principles. Hence, it seems that the government itself has serious doubts on the Census data. One can’t seek to empower a deprived community through charity because it connotes a sense of superiority of one community over the other. Therefore, charity and human rights can’t exist together.

Disability and minority are synonymous in the sense that the disabled are equally subjugated and also happen to be victims of discrimination and exploitation by the majority non-disabled persons. (Karna 1999: 60–63; Robertson 1981; Safilios 1970) Despite enactment of several disability related legislations in India, especially the PwD Act, 1995, to protect persons with disabilities from various discriminatory practices, they are compelled to lead the life of ‘second class citizens’. The situation is worse for persons with disabilities living in rural areas. Taking into account the gargantuan size of the population affected by disabilities (which has been corroborated by UN and other international agencies as also the disability organisations), persons with disabilities could form into one of the largest minority groups (after the Muslim community) in India. The already over-burdened government machinery is obsessed with serious apprehension in regard to accepting the real figure of persons with disabilities because once the actual figure (of around six to eight per cent) is accepted, it may snowball into a major debatable national issue and stimulate persons with disabilities to clamour for equal and proportional distribution of government benefits. This way the consciousness and solidarity among them could be strengthened so as to mobilise them as a rallying political force and pressure group, whose interests cannot be ignored easily by any political power or government.

The spirit of unity and group solidarity as a precondition of minority group identity, however, is somewhat missing in the case of persons with disabilities, particularly in developing countries like India. Although there are evidences of the emergence of group rights consciousness globally, persons with disabilities have miserably failed to consolidate themselves into a cohesive and powerful force to reckon with at domestic and international levels.

The above arguments convincingly establish the absence of vital theoretical understanding about the basics of disability among the policy- makers and professionals involved in the data collection exercise. This is applicable to both the NSSO and the Census figures. In the West, Disability Studies has become a well-acknowledged academic discipline as a theoretical arm of the disability rights movement. The basic theoretical underpinning of Disability Studies is to change the mindset of the society so as to facilitate the empowerment of persons with disabilities in the true sense of the term, thereby disentangling the prejudices linked with disabilities. (Karna 2001) However, things are quite different in our country. Notwithstanding the fact that Disability Studies has been granted recognition as an academic discipline by the Ministry of Human Resource and Development (MHRD), Government of India, even the first stage of developing a model curriculum for it has yet to see the light of the day. Thanks to the lackadaisical attitude on the part of the mandarins of the MHRD as also the University Grants Commission (UGC) and other prestigious academic institutions (like Central Universities, IITs etc.), such a step-motherly treatment is being meted out to this emerging area of academic enquiry. There is more to it than meets the eye. It could also be a ploy to bedevil the process of development of the disability rights movement, particularly in the aftermath of ratification of the UN Convention on Rights of Persons with Disabilities by India.

Persons with disabilities and the disability organisations are also responsible for this sordid state of affairs: they have failed to mobilise themselves as a pressure group to influence the policy-makers and planners. Unlike other depressed communities, the reliance on numbers for political mileage has failed in the case of persons with disabilities: this is seen in Uttar Pradesh (34.53 lakhs) with the largest number of disabled population, followed by Bihar (18.88 lakhs), West Bengal (18.47 lakhs), Tamil Nadu (16.42 lakhs), and Maharashtra (15.69 lakhs)—they have not been able to organise themselves politically as one community. (Government of India 2001)

This statistical argument gets all the more strengthened by the fact that in the rural areas there is a large concentration of disabled population. For instance, Himachal Pradesh has the highest rural disabled with the figure of 92.82 per cent, followed by Sikkim (91.18 per cent), Bihar (89.66 per cent), Nagaland (88.76 per cent) and Assam (88.27 per cent). Despite the fact that nearly 90 per cent of disabled individuals live in the rural areas of these States, persons with disabilities have failed to get their due representation even in the third tier of governance like the Panchayati Raj Institutions.

The reason behind this exclusion is lack of awareness among the disabled regarding their basic human rights, particularly political rights. This could be substantiated by the fact that only 50.56 per cent of the rural disabled people are literate in Himachal Pradesh where there is 75.08 per cent rural literacy. The same is the case with Sikkim, Bihar, Nagaland and Assam where the figures of literacy for the rural disabled are only 39.35 per cent, 34.92 per cent, 26.44 per cent and 42.42 per cent respectively. This despite the fact that the total rural literacy in these States is in the range of 66.82 per cent, 43.92 per cent, 62.79 per cent and 59.73 per cent respectively. (Government of India 2001)

Concluding Observations

The above discourse leads us to explore the root causes of such ambiguities/ discrepancies, and thereby remedying the situation. The yawning
gap between aspirations and fulfilment of the commitment of the government is perhaps due to the lack of proportionate growth of the concerned peripherals and other supporting socio-economic and ideological structures. What is urgently required in the Indian context is to promote teaching and participatory action research in the field of Disability Studies. Ambiguities, discrepancies and contradictions in disability data and the PwD Act as also other legislations are not the root problems per se; rather they are mere manifestations of the real and deeply entrenched problems. The main problem lies in lack of proper understanding about disabilities as also disabling barriers at the grassroots level. Disability Studies could play a vital role in this direction by sensitising the stakeholders as also all those involved in shaping and implementing policies for mainstreaming persons with disabilities. Subsequently, this could serve as a rallying point for actualising the goals of equalisation and full participation of persons with disabilities in nation-building. Hence, the basic understanding of disability, rehabilitation and human rights related issues must find place in the curricula at all levels ranging from schools to colleges and universities. Since the phenomenon of disability involves multitudinous aspects, Disability Studies must be studied from interdisciplinary perspectives. Scholars, experts and professionals from all disciplines could contribute to developing and enriching this discipline so as to make it a change agent for mainstreaming the vast population of persons with disabilities.

References

Government of India (1995): The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995, Parliament of India, New Delhi.

Government of India, (2001): Census of India 2001, Registrar General and Census Commissioner, New Delhi.

Jeffery, Roger and Nidhi Singal (2008): ‘Measuring Disability in India’, Economic and Political Weekly, 43 (12 and 13), March 22-April 4.

Kama, G. N. (1999): United Nations and Rights of Disabled Persons: A Study in Indian Perspective, (New Delhi: APH Publishing Corporation) pp. 60–63. See also I. Robertson (1981): Sociology (New York: Worth Press); also see C. Safilios–Rothschild (1970): The Sociology and Social Psychology of Disability and Rehabilitation (New York: Random House).

Kama G.N., (2001): Disability Studies in India: Retrospect and Prospects (New Delhi: Gyan Publishing House).

Mitra, Sophie and Usha Sambamoorthi (2006): ‘Disability Estimates in India: What the Census and NSS Tell Us’, Economic and Political Weekly, 41(38), September 23-29.

Mont, Daniel (2007): Measuring Disability Prevalence, SP Discussion Paper No. 0706, The World Bank, (http://siteresources.worldbank.org/SOCIALPROTECTION/Resources/SP-Discussion-papers/Disability-DP/0706.pdf), viewed on February 10, 2009.

The World Bank (2007): People with Disabilities in India: From Commitments to Outcomes, Human Development Unit, South Asia Region, (http://siteresources.worldbank.org/DISABILITY/Resources/Regions/South%20Asia/PeoplewithDisinIndia.pdf), viewed on February 7, 2009.

The author is a doctoral candidate at the South Asian Studies Division, School of International Studies, Jawaharlal Nehru University, New Delhi.