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Disability Rights Movements in India: Politics and Practice

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Abstract

This paper charts the history of the disability rights movements in India by referring to the social and political contexts within which they emerged, the ideological influences, structures, issues, possibilities and challenges. Several factors were involved in the rise of disability movements in the late 1980s and 1990s. Among these was a much more accountable state policy, the strong presence of women's movements, and the interest and push of international agencies, the presence of which created a more conducive space for the political mobilisation of marginalised groups such as the disabled. The passing of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 owes much more to international pressure than to lobbying and protests by disability rights groups. The disability rights movement in India is still trying to register its presence in the public sphere. It has, however, undoubtedly touched the lives of masses of disabled persons and pushed fora more disabled-friendly environment in the country.
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Disability Rights Movements in India:
Politics and Practice
Nilika Mehrotra
This paper charts the history of the disability rights
movements in India by referring to the social and
political contexts within which they emerged, the
ideological influences, structures, issues, possibilities and
challenges. Several factors were involved in the rise of
disability movements in the late 1980s and 1990s.
Among these was a much more accountable state
policy, the strong presence of womens movements, and
the interest and push of international agencies, the
presence of which created a more conducive space for
the political mobilisation of marginalised groups such as
the disabled. The passing of the Persons with Disabilities
(Equal Opportunities, Protection of Rights and Full
Participation) Act, 1995 owes much more to
international pressure than to lobbying and protests by
disability rights groups. The disability rights movement
in India is still trying to register its presence in the public
sphere. It has, however, undoubtedly touched the lives
of masses of disabled persons and pushed for a more
disabled-friendly environment in the country.
Nilika Mehrotra (nilikam@gmail.com) is with the Centre for the Study of
Social Systems, School of Social Sciences, Jawaharlal Nehru University,
New Delhi.
I
n charting the history of disability rights movements (DRM)
one needs to examine the rise of other similar movements in
postcolonial India, especially the women’s movements, envi-
ronmental movements and more recently dalit movements. The
social and political context which provided the background and
the necessary impetus to these movements displays an interest-
ing trajectory, points of conjunction and disjunction across the
world. The political and ideological influences which grew and
crystallised in the post-second world war western world resulted
in the emergence of the civil rights movement, anti-racist pro-
tests and women’s movements. These not only reshaped the pub-
lic sphere but also propelled shifts in theory construction and re-
formulating methodologies for comprehending the changing dy-
namics of social reality. In the 1960s and 1970s, issues of power
hierarchies cutting across race and gender acquired an extremely
important position reframing the trajectories of social move-
ments across the world. Along with the focus on activated political
spheres through sweeping anti-establishment protests across
countries, the role of the United Nations, nation states and inter-
national funding organisations becomes crucial in contextualis-
ing the burgeoning growth of networks of people raising issues of
race, gender and disability in cross-cultural contexts. Disaffec-
tion with development agenda and lowered conviction in science,
failed projects of modernity, and widespread and growing ine-
qualities appeared central to the way people articulated their
grievances and expressed connections between theory and prac-
tice. In this paper I propose to chart the chequered history of the
disability rights movements in India by referring to the social and
political contexts, within which they emerged, the ideological in-
fluences, structures, issues, possibilities and challenges.
1
In contemporary times, we find global theoretical and practical
discourses emanating from the west and non-western counter-
points taking cues in conceptualising their own situation relevant
to local realities. Postcolonial and subaltern perspectives further
fracture the seemingly straightforward relationship between the
subject and the object resulting in reflections from the other end.
In the south Asian context, women’s movements and environ-
mental movements were in the forefront in the late 1970s and
1980s trying to foreground the structural basis of gender in-
equalities and environmental degradation. They perceived these
as grids for conceptualising the assault on a dignified life, and
livelihood possibilities in developing countries. In theoretical
terms, a shift from system to actor and agency signified alter-
native modes of comprehending and linking macro with micro
processes through greater emphasis on the phenomenological
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understanding of everyday life. Postmodern and post-structuralist
influences in the 1990s however, brought the question of differ-
ence to the centre and fuelled identity politics in the era marked
by what is loosely termed as globalisation.
The late 1970s and 1980s saw the emergence of large numbers
of organisations termed as non-governmental organisations (NGOs),
centring on livelihood and development issues and women’s
groups focusing on violence against women. In addition women’s
studies programmes and courses on development studies were
floated in universities focusing on a wide variety of issues right
from economic and political issues to health to right to equal and
dignified life. Dalit concerns, on the other hand, emerging in the
late 1980s became rather powerful in the 1990s. It took the
course of political mobilisation on reservation issues, acquiring a
political base, informing reshaping of dalit movements and push-
ing academic engagements to acquire political voice in the inter-
national arena on caste issues. Anti-caste articulations have be-
come one of the most important discourses in south Asia today.
Disability rights activism emerged in this context where the
voices of persons with disabilities (PWD) that were muted till the
early 1990s began to nd collective expression. One of the possi-
ble reasons for this lies in the complexity and diversity entailed in
the issue. PWD were and are a divided group signified by diver-
sity. Disability cuts across race, caste and class divisions and
therefore the likelihood of framing groups was not a simple pos-
sibility. More than 70% of the disabled live in rural areas where
there is virtually no information about their rights. The attitude
of the Indian state was clearly informed by the medical, charity
and religious model where PWD were construed as dependents and
beneficiaries of state provisions. They were not seen as capable of
formal employment and responsibility for them was invested
with families and communities. The failure of the Indian state to
perceive PWD as productive members of society was parallel
to the invisibility of women’s work and non-enumeration of it
t owards GDP. The theory of karma, family ideologies, attitudes of
charity and pity marked the attitudes of society towards the PWD
and clearly informed state policies towards them.
The Backdrop
Disability rights movements like other movements in the post-
1960s consist of several conglomeration of individuals and
groups with disabilities that came to be organised in the 1980s
under a cross-disability umbrella representing the interests of
the disabled as a group. It is pertinent to note here that in inter-
national DRM, the definition of disability took away from the focus
on the impaired body and its medical construction (medical
model) to a matter of social oppression where social-structural
arrangements and cultural values were seen as creating a dis-
abling environment for persons with physical or mental impair-
ments and socially engendering and undermining their psycho-
emotional well-being (social model). The disability rights approach
questioned the assumptions and taken-for-granted notions which
construed persons as able or disabled and uncovered the knowl-
edge and power politics inhering in these discourses. In the west,
a reliance on the social model provided for an understanding of
societal conditions as essentially oppressive and disabling. The
DRM were essentially engaged in struggles for creating condi-
tions for “independent living” for people with disabilities. More
recently, post-structuralist disability scholars have pointed to the
limitations of social models and have tried to bring back the im-
paired body to the discussions on disability. Postmodernist and
postcolonial interpretations, on the other hand, expand the scope
of the debate by urging us to note the diversities of social contexts
and implications of colonial discourses on questions of health,
disability and social-structural inequalities. In the south Asian
context, understandings of disability through charity, religious,
development, culture-centred and kinship-based models have
begun to take shape (Miles 2002; Dalal 2002; Mehrotra 2004a,
2006; Baldwin 2006; Staples 2007).
In India and much of south Asia, disability is largely seen as a
product of cultural impediments such as beliefs and stereotypes
as well as structural impediments like poverty, lack of develop-
ment, illiteracy, unemployment and caste, class and gender bar-
riers. PWD are marginalised in education, employment, mobility
and other significant life areas. The meaning of disability in India
is embedded in this basic struggle for survival and cultural
understanding. Prevention and rehabilitation models continue to
be relevant in such circumstances.
Miles (2002) argues strongly for recovering histories of disabil-
ities in south Asia to enable the improvisation of self-help strategies
through references to the past. It is within the family that south
Asians with disabilities have experienced the most responses
whether in childhood, in adulthood or as elderly persons. Yet the
category of the family or community as the rst level of response
to disability has been barely documented in history. PWD largely
appear as beggars in records from antiquity to the present, and
begging was not necessarily a despised activity.
Miles (2002) further argues that although the informal and
semi-formal responses might now be viewed as largely in the
charitable, top-down, dependency-enhancing mode, south Asian
social histories have also transmitted a heritage of role-models
for independent living. With the colonisation of India by the Brit-
ishers, large-scale charity missionary activities started under of-
ficial patronage. With their colonialist attitudes, they completely
ignored indigenous culture and belief systems. The identification
of the benefactors and beneficiaries did help in reaching out to
the poor and destitute, but there was no substantial impact on
the disability situation. Disability was never a real issue for them
to bother about (Dalal 2002).
In independent India following the policy of welfare, the
National Council for Handicapped Welfare was set up to frame
policy guidelines for the entire country and to prioritise disability
programmes. This council, comprising central and state minis-
ters and rehabilitation experts, regulated the activities of the
central and state governments and of voluntary sectors.
2
Most of
the rehabilitation services in India followed the biomedical
model in which hospitals and primary health centres played a
key role. Disability was viewed as a diseased state and the em-
phasis was on curing, correcting or attempting to ameliorate the
problem so that PWD became asnormal as possible.
3
Almost all
the older organisations acted as service providers working with
the idea of rehabilitation.
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The activities of these groups were centred on issues of educa-
tion, vocational training and those emerging from the common
nature of disabilities. The literature existing on these groups
is largely descriptive and does not dwell on questions of self-
advocacy and politics. They also had very little interaction with
other groups and were operating in a relatively apolitical context.
They usually defined their mandate on the basis of narrow diag-
nostic categories derived from a medical model of disablement.
Furthermore, due to state funding, their mandate was inherently
compromised. More fundamentally, they simply did not reflect
the views of disabled people but instead subscribed to the belief
that scientific experts such as physicians, social workers and
occupational therapists were best suited to define and solve the
problems faced by PWD (Malhotra 2001).
The Beginning
The 1980s saw a shift in the policy frame, from welfare to deve-
lopment and marked the phase where the disabled now figured
not as recipients but as participants in the development process.
The Decade of Disabled Persons (1983-92) marked another shift
in the whole debate about the goals of rehabilitation.
4
This
period witnessed the greater interest and participation of inter-
national NGOs and the emergence of local NGOs in partnership
with government working at the community level.
Several factors were involved in the rise of disability move-
ments in the late 1980s and 1990s. Among these one might men-
tion a much more accountable state policy, the strong presence
of women’s movements, the interest and push of international
agencies, the presence of which created more conducive space
for the political mobilisation of marginalised groups such as the
disabled. The passing of the Persons with Disabilities (Equal
Opportunities, Protection of Rights and Full Participation) Act, in
1995 owes much more to international pressure than to lobbying
and protests by disability rights groups. A simple comparison with
DRM in the west indicates that they had to wage a much longer
struggle and demonstrate a much stronger presence for passing
of the amendments. In India, this phase saw groups being formed
by disabled activists for claiming their political, legal and social
goals by adopting rights-based approach. In the 1990s, globalisa-
tion further determined the course of DRM in the Indian context
especially through larger international influences, stronger pres-
ence through local NGOs, and easy availability of funding, greater
possibility of networking and faster and productive information
flow through the web.
Disability rights groups, however, are diverse in nature as
reflected in their definitions of disability and strategies of activism.
To make sense of the diverse nature of organisations which
loosely form movements, the concept of social movement organi-
sations (SMO) is useful as it allows us to locate heterogeneities in
terms of ideologies and practices of the groups which at the same
time adhere to the larger goal of the disabled. In studying inter-
organisational dynamics of SMO, Morris (1984) analysed how
each of the major SMO of the civil rights movement shaped collec-
tive action by carving out its own spheres of organisational
activity and producing the leaders, organisers, and tactics that
provided the movement with its power and dynamism. At the
interorganisational level, these organisations engaged in com-
petition, cooperation, and conflict. What has been learned from
this interorganisational standpoint is that when SMO compete
and cooperate they can produce greater volumes of collective
action by sharing knowledge and resources and by triggering
tactical innovations.
The DRM in India started only in the early 1990s. The launch of
the Asian and Pacific Decade of Dis abled Persons in 1993 gave a
definite boost to the movement. In that year, the Indian govern-
ment organised a national seminar in New Delhi to discuss the
various issues concerning disabled citizens. The main need that
emerged from the seminar was for a comprehensive legislation to
protect the rights of PWD. However, it was only after intense lob-
bying of the Disabled Rights Group (DRG) that the crucial legisla-
tion was passed in 1995 (Hosamane 2007).
Bhambani (2005) presents the contested views regarding the
origin of the disability movement in India. According to her, dis-
ability remained a marginal issue on the federal stage and in the
social outlook of disabled persons in India until the early 1990s.
However, Jagdish Chander (2008) points out the role of govern-
ment-run institutions for the blind in providing space for the
politicisation of the visually challenged and their efforts at self-
advocacy. His paper clearly brings out the agency on the part of
the disabled much before the DRM became active in India.
Till the 1990s, only persons and groups with physical disabili-
ties tended to constitute the disability rights groups and those
with mental and developmental disabilities were largely left out
as these impairments were considered to have their own special
issues, which were largely medical in nature. In this case, many
NGOs run by families or parents of those with intellectual disabilities
emerged who pushed for the passing of regulation, the National
Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental
Retardation and Multiple Disabilities Act, 1999 which deals with
issues relating to persons with developmental disabilities.
Bhambani (2005) examines the factors that have facilitated
mobilisation in India. The three key factors she has identified
are cross-disability demands, issues (rights-based issues, issues
relating to inclusion/integration, demands for services, facilities
and concessions), and resources (material and human). Her
paper also dwells on the nature of tactics and strategies disability
activists employed including the civil rights frame as well as
Gandhian techniques.
The Persons with Disability (PWD) Act 1995 has been the most
convenient tool for disability activists pushing their rights-based
demands. The movement was further strengthened when the
National Centre for Promotion of Employment for Disabled
People (NCPEDP) launched Disability 2000, a national campaign
in which it collaborated with disability rights organisations, ad-
vocacy groups and local governments and formed the National
Disability Network. In each of the 32 states and union territories,
a partner was identified, who would work on various disability
rights issues affecting the nation (Hosamane 2007). Disability or-
ganisations are actively engaged in defining and transforming
disability policy and discourse at the local level and beyond. The
adoption of a civil and human rights agenda required disability
advocates to renegotiate and reformulate not only the structure
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and approach to disability policy, but also the identity, citizen-
ship, and social positioning of people with disabilities in society
(Baldwin 2006).
Structures and Strategies
Looking at the organisational framework of disability rights
movements we find three parallel tendencies growing right from
the 1980s onwards. Just as feminist theory has splintered into
myriad camps with vastly different perspectives, the disability
rights movements contain organisations with significantly differ-
ent politics, strategies and tactics (Malhotra 2001). On the one hand
we have individual-centred organisations led by educated dis-
abled professionals, largely urban-based, lobbying for provision
of services, awareness-creation and dissemination of information.
Then there are NGOs managed by both disabled and regular
activists largely working through community rehabilitation pro-
grammes among rural and urban poor. The third, group is of dis-
ability studies scholars largely engaged in knowledge production
within universities, research institutions and also NGOs.
The rst category of groups play an advocacy role, speak a
language of rights and network and lobby for influencing policies
of the governments. International exchange and collaboration
have made them aware of the struggle of people with disabilities
in other countries. This upwardly mobile strata of society plays a
key role in advancing the disability movement in India. They also
claim equal partnership for people with disabilities in all devel-
opment programmes affecting their lives (Dalal 2002). The DRG
was one such group of like-minded people, mainly persons with
disabilities, who came together in 1994 and lobbied for disabled
friendly legislations.
The NCPEDP, a Delhi-based group has been using the PWD Act
1995 as a reference point and has argued for better implementa-
tion in terms of providing basic disability statistics, details of pro-
grammes and the reach of the schemes through a shadow report.
The Disability Act that promises equal opportunities to the dis-
abled, provides for 3% job reservations for the disabled. They
a lleged that government annual reports did not provide any
i nformation on the implementation status of the reservation in
government jobs. Others have also recently raised issues of em-
ployment for disabled in the private sector. The business process-
ing outsourcing (BPO) jobs and the information technology (IT)
sector has been seen to be the greatest potential employer of
PWDs (The Hindu
2005).
The NCPEDP has been stressing the fact that there are no
disability-friendly vehicles in Delhi, or even disability-friendly
toilets at the New Delhi railway station. Their shadow report em-
phasised that the 10th Plan had made provision for a Composite
plan for the Disabled in the budgets of all the ministries, but that
none of the central ministries annual reports mentioned the
plan (The Hindu
2005). One of the major demands of such groups
is fulfilment of the promise to provide accessible facilities in all
public places.
Groups like these from time to time also resort to hunger
strikes, dharnas or sit-ins and protests to make the voices of the
disabled heard. Their main point of reference remains the State
and they wish to make it accountable for fulfilment of their
rights. However, on the occasion of the World Social Forum in
2004, activists did not forget to remind the organisers about their
disabled unfriendly attitudes as no facilities were provided for
their participation.
Post the PWD Act, in fact, a large number of disability issues
related NGOs have been set up. Many are small in size; the smaller
ones are flexible in terms of receiving funds and moving from
project to project and are not necessarily directed in their actions
by the State. But these groups also suffer from personality cults
and remain leader-centred.
Ghai (2003) argues that disability rights organisations are
dominated by the concerns of middle-class men.
The problem, however, arises when their fight for ‘disability rights
subsumes agendas that are visible and significant only for the very
privileged of the disabled. Concessions in air travel, hotels, and special
parking facilities, though undeniably necessary, are meaningful only
to a selected (sic) population of the disabled. The truth is that these is-
sues do not resonate in the lives of the majority of disabled who are
further marginalised by virtue of their class, caste, rural urban resi-
dence, and most strikingly, gender. What is and should be more sig-
nificant for them are the issues of education employment, residence,
technological aids, and accessibility, to name a few. The reality, how-
ever, is that the majority of the disabled are still fighting to secure the
‘bare minimum’.
The disability-rights movement claims to take cognisance of
the rights of the disabled with diverse impairments. Women with
disabilities who have felt ignored in the process and who seem to
suffer from multiple disadvantages have raised several issues.
Feminist disabled women are at the forefront of arguing that dis-
ability rights movements are male-centric and have also accused
women’s movements of not paying attention to their concerns
(Ghai 2003; Hans and Patri 2002). Today many women disability
rights activists have accepted prominent positions not only in the
DRM but also with government bodies, commissions and even in
the private sector.
Some lawyers are also active in the DRM as more PWDs are fil-
ing for breach of their rights. One such case is the Indra Sawhney
vs Union of India, popularly known as the Mandal case. Advocate
S K Rungta intervened for the National Federation of the Blind on
behalf of all persons with disabilities and wanted the Supreme
Court to consider the specific issue of whether “backward classes
of citizens” as defined by the Constitution could include persons
with disabilities. Despite sharp divisions on other issues raised in
the Mandal case, the apex court held that though backward
classes of citizens” as used in Articles 15 and 16 did not cover per-
sons with disabilities the constitutional scheme and spirit of
Article 14 allowed for affirmative action in favour of persons with
disabilities. Lawyers’ networks are strongly arguing for further
amendments in the law to allow for better implementation
(Pandey et al 2005).
The middle-class face of the DRM has made good use of tech-
nology. They bring out magazines, and journals, run websites
and work with media professionals for positive representations of
the disabled in the media. The Asia Pacific Disability and Reha-
bilitation Journal is brought out by a Bangalore-based disability
and rehabilitation organisation since the 1990s for researchers,
planners, administrators, professionals, donor organisations and
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implementing agencies involved in disability and non-institutional
rehabilitation. In 2007, Combat Law brought out a special issue
on disabilities and the challenges that PWDs face with regard to
civic participation in the Indian context. Disability News India
(DNI) is a news service dedicated to providing quality up to date
information regarding disability issues in the Indian context.
The hierarchy of impairments in the DRM in India is clearly one
of the problems which western disability studies scholars have
also pointed out. The frequent use of the symbol of the wheel
chair often obscures the differences within the movement and
the priorities of rights of persons with specific disabilities. This
symbol however not only particularly represents persons with lo-
comotor disabilities but also takes its cues from the societal and
governmental stereotyping of disability. Those with visual dis-
abilities also claim a very strong presence in the movement. They
have also been very vocal in fighting for jobs, accessible buildings
and assisted devices.
Community-Based Rehabilitation Services
Most disability services in India are under the auspices of the
government, but they have also have a strong NGO presence
(Thomas and Thomas 2002). In the rural areas, and among
urban squatters, NGOs are promoting organisations of disabled
people and parents, at local levels. They are also largely engaged
in what is known as community rehabilitation programmes gen-
erously supported by the government and international agencies.
All these efforts in the last two decades have contributed to popu-
larising the philosophy of community-based rehabilitation (CBR)
and raising the hopes of millions of people with disabilities. How-
ever, as the critics maintain CBR, as practised in India, clearly re-
flects biases of the urban, educated social activists and those of
the funding agencies. CBR initiators carefully maintain their dis-
tance from religious institutions and other traditional organisa-
tions because to them religion becomes an anathema, as they
pursue goals that fit within a medical and scientific framework.
The emphasis is on needs survey, advanced planning, budgeting,
record keeping, outcome evaluation, etc. All these are not only
alien but also incompatible with informal village functioning
(Dalal 2002, also see Miles 2002).
Cultural factors have hardly been considered in these pro-
grammes (Mehrotra 2004a). Despite the non-governmental and
governmental support, CBR has failed in bringing about any sig-
nificant change in the disability scenario in rural areas. One of
the advantages though of this grass roots activism is the dissemi-
nation of information, awareness and politicisation among PWD,
who have begun to voice their concerns (Erb and Harriss-White
1996; Lang 2001; World Bank Report 2007). NGOisation of the
movement however, also proves to be depoliticising in many con-
texts. Agendas are dictated, cultural issues ignored and a new
vocabulary of exclusion and discrimination introduced even in
those contexts where it did not exist.
International institutions have gradually recognised disability
as one of the most important issues which if not considered,
makes development targets elusive. Linking disability to poverty
is one of the ways in which this discourse poses impoverishment
not only as breeding disability but also in terms of high economic
costs for families and communities who have to bear them. High
costs incurred due to the stigmatising effects of disability in
mainly developing countries are said to result in low literacy
rates, widespread unemployment and high cost of healthcare.
The interlinkage of gender and disability has also been empha-
sised strongly as one of the key concerns in this context by the
World Bank (2007).
More recently the distinctions between groups who worked
as advocacy groups and those working at the grass roots level
have blurred. Action for Ability Development and Inclusion, AADI
(earlier Spastic Society of India) is today not only an advocacy
and service organisation but it has also started outreach to the
villages, implementing CBR initiatives. Some of the older organi-
sations working in the field have also expanded their canvass to
include notions of rights, advocacy, training and CBR initiatives.
Disability Issues in Academia
For a long time the study of disability was mired in the medical
model in subjects like rehabilitation studies, psychology, social
work and, to some extent, education. In mainstream social
science disciplines like history, economics, political science and
sociology/anthropology there was a virtual neglect and of dearth
of interest in disability issues. Of late, though, disability perspec-
tives are gradually emerging and challenging the very premises
of the social science understanding of social life which centre
around the supposedly normal” or “ablebodies. The concept of
disability questions the assumptions and conventional notions
which construe persons as able or disabled and uncovers the
knowledge and power politics inhering in these discourses.
So far we have found similar trends in charting DRM with ref-
erence to trajectories of women’s movements. There are a few
points of divergence that are noticeable. One of the most impor-
tant is its limited linkages with the academia. Unlike women’s
movements and women’s studies which fed into each other, we
find fewer inputs coming from academia which could enrich the
movement. Ghai (2003) laments that the disability movement
has promoted sweeping generalisations about disability and
handicap without regard to differences in kind and degree of
impairment, or different adaptations to impairment. There is
serious dearth of original research which is not based on the
medical model. Much of the literature is either in the form of
news, reviews, compilations of articles from across the globe,
studies in the form of cases and literature produced by NGOs, or
documentation of rehabilitation practices and reflections on
policy issues without substantiated facts (Karna 2001, Hans and
Patri 2002, APRDJ). Some literature is also based on narratives of
disabled leaders. Anecdotes are often used by disabled activists
to generalise about social conditions. Critics of disability move-
ments maintain that efforts are being directed towards develop-
ing infrastructure and not towards conducive interpretation of
disability in the Indian context (Mehrotra 2006, 2008; Miles
2002; Staples 2007).
Though some writers have advocated the role of academic
institutions in effecting the transformation of public perception
regarding disability issues and affecting policy changes in India,
universities have been rather slow on this account (Karna 2001).
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There is general suspicion of research which challenges or
disproves the claims of exclusion, deprivation and discrimina-
tion, in short the rhetoric of the movement (Mehrotra 2004b;
Staples 2007). A beginning has been made in the adoption of a
disability studies perspective by a few Indian scholars. Econo-
mists have mainly shown interest in measurement of disability,
and number of disabled in the country. There is vigorous debate
among the social scientists on the measurement and definition of
disability itself and its implications for GDP and the overall ques-
tion of development especially with reference to the employment
situation, costs of care, and constraints on the families (Erb and
Harriss-White 1996).
Political scientists and lawyers have started to engage with
questions of citizenship, rights and entitlements with reference
to the State and civil society and educationists are beginning to
explore links between disability and education not only in
schools but also institutions of higher education. Some anthro-
pologists have come up with real life ethnographic studies of PWD
in their families, communities and institutions which comment
on the heterogeneous nature of impairments, diversity of social
structures and nature of exclusion and inclusion, and the agency
of people thereby providing correction to rhetoric and contri-
buting to policy issues (Staples 2007; Lang 2001; Mehrotra 2006;
Vaidya 2008; Adlakha 2008). There is an urgent need for
researchers to recognise disability as an important marker of
social inequality. Disability studies around the globe situate dis-
ability as a reality to be deconstructed and demolished through
political and intellectual activity (Stone 1999).
There is growing literature today which points to the gendered
dimensions of disability in the Indian context (Davar 1999; Hans
and Patri 2002; Ghai 2003; Mehrotra 2006, 2008; Mehrotra and
Vaidya 2008; Adlakha 2008). Books, articles and compilation of
special issues focus on the linkage between gender and disability
in the Indian context. They reflect on disabling and oppressive
conditions existing for women who appear to bear multiple
burdens of gender, caste, class and disability. The dominant dis-
course emerging out of these studies focuses on societal ableist
5
conceptions acting as impediments in women’s aspirations to
lead “normal lives” with marriage and children as they are seen
as unfit to be wives and mothers. Ethnographic research, how-
ever, challenges these notions as such generalisations are not
backed by facts. Realities vary. Mehrotra’s (2008) study clearly
shows that in situations where there is a dearth of marriageable
girls like in Haryana, women with disabilities may be at an ad-
vantage against poor, unemployed men who do not fit the bill.
Women with moderate disabilities may not be seen as depend-
ent as they are considered to be useful for procreation and do-
mestic work. The gendered nature of care work as an issue has
assumed importance in disability discourses and issues of disa-
bled women both as caregivers and those in need of care have
acquired recognition.
One of the important points of discomfiture is on the issue of
methodology. Most of the disabled scholars express covertly or
overtly that the experience of disability is crucial to knowledge
construction. Here we need to draw from other movements
around questions of race, caste and gender. One lesson from
women’s studies is that there is a danger of ghettoisation. Like
gender and caste, inequality based on disability needs to be a
central concern of pedagogy. Consensus, however, in the com-
munity of disabled scholars seems to be for the establishment of
disability studies taught by disabled scholars.
In the last one decade the number of students doing research
on disability issues has increased considerably.
6
In universities
there are proposals for introducing courses on disability studies.
7
Inclusive education courses are dealing with disability issues.
8
These are welcome moves which indicate that the disability ques-
tion is moving away from medical concerns and entering the
arena of social science. The need of the hour however, is to ex-
plore the interface between medical and social realities.
Self and Identity Issues
Like other identity movements across the world, the DRM have
also constructed the disabled as a political category to encompass
the diverse range of people with impairments advocating their
right to live life with dignity, free from stereotypes and stigma and
as regular or “normal” people. Not all disabled are part of these
movements. In the Indian context, we see a change in vocabulary
undergoing major shifts over decades, i e, from “crippled” to
“handicapped” to “physically challenged” or differently abled to
finally “disabled” to designate persons with impairments. Only
people with a certain level of awareness and consciousness
would proclaim themselves to be disabled. In some contexts the
term “differently abled” also came into usage but it has not found
much acceptance among rights activists for its ableist connotations.
In my study in rural Haryana, most women with impairments did
not see themselves as disabled as in their cultural terms it trans-
lates as being “dependent” an identity they refuse to embrace.
Disabled as an identity has a limited reach owing to its common
sense understanding of being incapacitated”, “dependent” and
also due to the stigma it seems to carry.
Disabled-rights activists claim multiple identities such as dis-
abled, deaf, woman and so on. Feminist disabled activists accuse
the male leaders of being self-serving. The major distinctions ac-
tivists see among persons with disabilities are in terms of urban, ru-
ral, class, educated, illiterate and to some extent gender. Caste
and religious and ethnic issues have hardly been considered. Age
is another important missing factor. As a large number of activists
are relatively young and middle-aged, belonging to affluent
backgrounds, complex realities of identity formation and person-
hood in diverse Indian contexts takes a back seat.
Gainful employment has been seen as one of the most impor-
tant issues for PWD across rural/urban and caste/class divides.
When employed, the disabled are able to shed stereotypes of
being “dependent and they support not only themselves but
also their families. Education and employment are major aspira-
tions among the poor PWD both in rural areas and in the slums
of urban areas who wish to support themselves. In different
studies, PWD especially pointed to marriage and employment as
the desired goals (Lang 2001; Erb and Harriss-White 1996;
World Bank 2007).
The idea of “independent living” which assumes much impor-
tance in DRM in the west has been translated and interpreted not
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71
in individualistic terms” but “as people who live in family and
want to live as normal people with their families” (Singh 2008).
Marriage in this context emerged as one of the most important
issues which people not only in urban but rural areas also empha-
sised. Family and marriage seem crucial social support mecha-
nisms which PWD tacitly accept, especially in a context where
social security mechanisms are poor (Lang 2001; Mehrotra 2004;
World Bank Report 2007).
Most activists come from supportive family backgrounds with
western exposure. Many have also participated in other move-
ments in the Indian context especially the women’s movement.
The disability rights movement is also very strongly supported by
mothers of children with disabilities and by female professionals
like those with Action for Autism, AADI and several others. Nev-
ertheless, we do not find families figuring in the discourses of
rights of disabled and care is still not much of an issue. Sexuality
is also emerging as an important issue in recent years. Many
studies suggest that the disabled are seen as infantilised” and
asexual. Marriage and motherhood are seen as distant possibili-
ties for a majority of women in urban areas due to stigma and
notions of ableist normativity. Disabled activists especially in
urban areas have been debating on these issues (Limaye 2003;
Adlakha 2007).
Pioneers in the field are very few, and are struggling with mul-
tiple issues such as carving out a space for the movement and also
negotiating their identity. There are many disadvantages they
have to face in surviving and in sustaining the movement and
also self issues of political visibility are also important. Activists
have made good use of the media which, in turn, has been giving
wide coverage to individuals. A great deal of distrust and compe-
tition is visible as they are rarely seen on the same platforms or
making joint statements. They clearly seem to have found a con-
stituency and speak on othersbehalf and claim leadership roles.
One of the prominent activists fought a Lok Sabha election claim-
ing to be the spokesperson of the disabled in India.
Conclusions
It is clear that the disability rights movement in India is still trying to
register its presence in the public sphere. It has, however, undoubt-
edly touched the lives of masses of persons with disability and
pushed for a more disabled friendly environment in the country.
Given the enormity of a country like India, dealing with heter-
ogeneous communities and issues of stark underdevelopment,
striking differences in the backdrops of western DRM and Indian
DRM are visible. In India, the provision of accessible environment,
disability support services, job reservation and rights issues have
to be contexualised within the larger picture of deprivation and
marginalisation. The State has played a very important role in
taking the lead in formulating acts and policies, initiating dis-
ability prevention and rehabilitation programmes and promoting
organisations affecting the lives of millions of disabled in the
country. With the passing of the PWD Act and with the India rati-
fying the UN convention on the rights of the disabled, the ground
was laid to demand rights to citizenship, respect and opportuni-
ties for persons with disabilities. To establish disability studies as
a discipline too, state support is critical and positive responses
have been coming from universities. Unlike the women’s move-
ment in India where changes in law and policies followed aggres-
sive protests and lobbying by women’s activists, in the case of the
DRM, the shifts in the State’s development policies itself triggered
the background for disability rights activists to come together.
The role of transnational discourses on disability rights flowing
from international funding organisations further helped to
consolidate the disability rights group identities in the Indian
context. With the beginning of the cross-disability movement, a
political identity for the disabled was claimed and asserted in the
public sphere. From the beginning, gender has also been incorpo-
rated as a major aspect of disabled identity owing to the already
existing fertile ground laid for it by disabled feminist scholars
in the west.
Unlike the western countries, where state and international
agencies are looked upon by DRGs as matter of rights, in develop-
ing countries with poor social security mechanisms, much is left
to families and communities as they have traditionally been
responsible for taking care of their disabled members. While ac-
knowledging this fact and also pointing to shrinking community
and family support mechanisms, the State is being reminded of
its responsibility towards disabled citizens. Pointing to disabled
unfriendly attitudes DRGs ask for the removal of social barriers
too through legal interventions, disabled friendly policies and a
supportive bureaucracy.
Though many rights groups are informed by the social model
and have moved away from charity to self-advocacy approach, in
practical strategies they adopt biosocial approaches where disa-
bility is seen both as a medical condition and a product of social
oppression. CBR initiatives which always adopted a rehabilitation
approach have also made room for rights-based perspectives.
Groups have grown into organisations and are more profession-
alised and face routinisation.
The role of individual activists is very crucial as they have
made DRGs visible and also helped to claim an identity of DRM by
and for PWD. Their limitations are in terms of relying on western
models and perspectives, narrow focus on jobs, reservations and
concessions, little understanding of the grass roots and an inabil-
ity to deal with diversity. They use slogans like “exclusion and
discrimination” without much consideration of diverse contexts
where inequalities of several kinds always exclude some people
from some contexts. In fact their inability to consider the positive
cultural resources like undocumented histories of the disabled,
family and community support mechanisms and also a much
more responsive state creates a myopic vision (Miles 2002;
Mehrotra and Vaidya 2008).
In the Indian context, a general disabled friendly attitude is
often construed as based on charity or pity approach, but family
support is often taken for granted. However, in the west, relative
lack of family or community support pushed disabled activists
towards ideas of independent living. The fact of exclusion of the
disabled from certain spheres of life in the Indian context is sup-
ported by surveys, but community support is relatively easier to
come by. Except in cases of certain severe disabilities and illnesses
like leprosy, TB or AIDS, social stigma is not very strong and PWD and
their families find ways to deal with it (Das and Adlakha 2001).
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Economic & Political W eekly
72
Staples (2007) reports how even those suffering from leprosy ne-
gotiate stigma, and use their agency to utilise their condition for
their livelihood. In fact some service organisations have taken on
the form of larger families in the relative absence of kinship cir-
cles in metropolitan centres (Vaidya 2008). Social attitudes like
the karma theory to explain disability also create a much more
accommodative approach to it.
A general suspicion on the part of disability rights activists
working with government-funded organisations, or those run by
“regular persons and a belief that experience is essential to
theory and practice may prove to be limiting in the long run.
The heterogeneity across organisations, however, points to
convergence and divergence required for working on diverse
issues, with different understandings of disability to deal with
the complex realities of the lives of the disabled in India.
The personal aspirations and co-option of many activists in
committees in India and abroad is pointing towards depoliticisa-
tion. Political participation remains one of the most neglected
issues in DRM.
One of the major implications of the assertion of disability
rights is its growing visibility in the public discourse in the
Indian context. In the last one decade or so, disability issues are
being raised in the media, in NGO documents and policy docu-
ments of the State.
The challenges before the DRMs are enormous. The recogni-
tion of diversities, historical, social structural arrangements, fast
changing social, political and economic dynamics have posed
new challenges. Building a strong movement requires a better
and nuanced grasp of the complexity of socio-political contexts
which the disabled inhabit. Lessons from the past and learning
from other movements like the women’s movement will go a long
way in strengthening DRMs in the Indian context.
Notes
1 This paper is based on secondary sources and my
engagement with disability studies over a decade.
This is by no means a complete account and
presents a partial picture of the movements.
2 The central and state governments initiated a
large number of welfare schemes and enacted
laws tomonitor the functioning of governmental
and non-governmental agencies. Four national
institutes for four types of disability, blindness,
orthopaedically handicapped, hearing impair-
ment and metal retardation were established in
different parts of the country during this period.
All these national level institutes were intended
to serve as apex bodies in the respective fields of
man-power development, evolving suitable service
models, carrying out research and serving as
information and documentation centres. The gov-
ernment also set up 11 regional vocational train-
ing centres in different parts of the country. The
state governments and voluntary groups founded
many other training organisations. To ensure uni-
form standards in technical courses in the field of
rehabilitation for the disabled, the Government of
India set up in 1986, the Rehabilitation Council of
India, based upon the model of the Medical Council
of India (Miles 2002).
3 Ibid.
4 With enactment of the Persons with Disabilities
Act, 1995 (19), by the Indian Parliament stage was
set. This comprehensive law ensures equal oppor-
tunities, protection of rights and full participa-
tion of people with disabilities in all spheres of
national life. With this, the government did away
with charity and welfare based models of reha-
bilitation. The Act guarantees equal rights, with
provision of imprisonment for those who indulge
in discriminatory practices.
5 Ableism asserts preferability and compulsoriness
of the norms of “able” body.
6 Especially in University of Delhi and Jawaharlal
University. See Karna (2001), Vaidya (2008),
Chakravarti (2008).
7 Indira Gandhi National Open University and
Ambedkar University at Delhi.
8 At NUEPA and Lady Irwin College, New Delhi.
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Intellectual disability is one of the least researched areas in social science inquiry. This paper traces the complex interplay between the concepts of intellectual disability, gender and personhood. It outlines the socio-historical and cross-cultural variability of intellectual disability, and its connections with class, urbanisation and modernisa- tion. Based on ethnographic material on the disabled in Delhi and the neighbouring state of Haryana, it presents case studies of two NGOs working with the intellectually disabled, namely, Arpan, a school for the mentally retarded in Rohtak, Haryana, and Action for Autism in New Delhi. It engages specifically with the notion of masculinity and the manner in which intellectually disabled male adults are feminised and in- fantilised. An attempt is made to understand how disabled individuals and their families seek social spaces for themselves and negotiate the social compulsions for ‘normalcy’ and competent adulthood.
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Public Culture 13.3 (2001) 511-531 The figures of the diseased and the disabled have been at the center of analysis in conceptualizing certain postmodern forms of sociality. Paul Rabinow (1996) formulated the concept of biosociality to suggest the emergence of associational communities around particular biological conditions. Many others (Ginsburg 1989; Rapp 1999) have theorized that major transformations in biotechnology have led to new forms of community in which people with disability or impairment have formed associational relationships in order to act in civil society and to influence, on the one hand, the decisions of the state, and on the other, the course of scientific research. But while such political mobilizations are extremely important in changing the environment of the disabled, they locate the subject positions of the disabled firmly within a liberal political regime. Issues of sexuality and reproduction can only be addressed in such a framework in terms of the legal rights guaranteed by the state to its community of citizens. As Anne Finger (1992: 9) states the issue, "It is easier for us to talk about -- and formulate -- strategies of discrimination in employment, education, and housing, than talk about our exclusion from sexuality and reproduction." In this essay, we propose to analyze notions of impairment and disability through a reconfiguration of the domestic sphere, offering ethnographic vignettes from the fieldwork we have conducted in different kinds of locations in Delhi. We hope to show that the domestic, once displaced from its conventionally assumed reference to the private, becomes a sphere in which a different kind of citizenship may be enacted -- a citizenship based not on the formation of associational communities, but on notions of publics constituted through voice. The domestic sphere we present, then, is always on the verge of becoming the political. A focus on kinship not as the extension of familial relations into community, but as the sphere in which the family has to confront ways of disciplining and containing contagion and stigma yields startling revelations about disability and impairment as located not in (or only in) individual bodies, but rather as "off" the body of the individual and within a network of social and kin relationships. Finally, by pairing the notion of the domestic with that of citizenship, we will also suggest that community as imagined by the modern liberal state in India makes state and citizenship complicated entities, and that claims to membership and belonging within the state may be enacted in everyday life in all kinds of dispersed sites. We identify the hospital as one such site, at which the domestic is instantiated performatively in relation to both state- and kinship-bounded figurations of community. Our ethnographic examples are drawn from a study of Punjabi kinship in which Veena Das was engaged in varying intensity from 1974 through 1994, and from a study of hospitalized female psychiatric patients in Delhi conducted by Renu Addlakha from 1990 to 1992. According to the editors of a recent volume entitled "Defects" (Deutsch and Nussbaum 2000), studies on disability have only recently begun to show an interest in the genealogies of earlier periods. Scholars have begun to take up diverse matters -- femininity as monstrosity; ugliness as aesthetic category; deafness and sign language; the exotic deformed in the early modern and Enlightenment periods -- in order to explore the historical connections between the imagining of community and the construction of normalcy. The category of gender is particularly important for such discussions within disability studies, demonstrating how contingent discursive inscriptions of "defect" could imperil the life projects of female subjects, even in the absence of any functional disability or impairment of the senses. Eighteenth-century European women whose smallpox-scarred faces were rendered "damaged" are one example of defective subjects produced at the intersection of norms of femininity and normalcy (Campbell 2000). Indeed, the importance of the face in defining norms of masculinity and femininity provides a cross-cultural point of entry into this range of issues and shows how defect may produce serious social disability. The example we highlight comes from contemporary Israel. In surveying the recent literature on disability, we found striking evidence of the conditional character of the parental...
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While most parents adapt well to caring for a disabled child, some do not. The literature on disability, narratives of parents, professionals and disabled activists in India highlight the role of prevailing social conditions in the suffering of the disabled and their families. Many issues germane to their day-to-day lives are made invisible by society, and personal and social suffering are ignored. Families also require a range of support services to be able to successfully care for a disabled member. Using the case study approach, this article examines the experiences of caregiving in families of young people with cerebral palsy. It highlights the individual and social dimensions of disability, and their intersection in the lives of individuals with disabilities and their families.
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Using qualitative data, this paper discusses notions of sexual identity among urban Indian youth through case studies of college students in Delhi. Gender emerges as a key analytical category in perceptions of sexuality among young men and women with visual and locomotor disabilities. The paper does not make claims to capturing the complex reality of ‘disabled sexuality’ in India, but highlights some key issues in a hither-to largely under-researched domain. [CWDS]
The Politics of Disability Rights Movement in India
  • Meenu Bhambani
Bhambani, Meenu (2005): "The Politics of Disability Rights Movement in India", International Journal of Disability Studies, Vol 1, No 1: 3-28.
Disability and History in India
  • Jagdish Chander
Chander, Jagdish (2008): "Disability and History in India", The Disability History Association Newsletter, Volume 4, Issue 1.
Disability Rehabilitation in a Traditional Indian Society
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Dalal, Ajit K (2002): “Disability Rehabilitation in a Traditional Indian Society”, Asia Pacific Disability Rehabilitation Journal
Outcast from Social Welfare? Adult Disability and Development in Rural India
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Erb, S and B Harriss-White (1996): "Outcast from Social Welfare? Adult Disability and Development in Rural India", unpublished paper, Queen Elizabeth House, University of Oxford.