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Mainstream, Vol 63 No 3, January 18, 2025

Disability, A Lived Experience | Allen David Simon

Saturday 18 January 2025

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Excluded, illtreated and left behind

Although disability rights movement has not registered a presence in India, it has undoubtably made significant progress in the lives of persons with disability, pushing a more disabled-friendly policy framework, with accessible to public spaces, rehabilitation programmes, disability support services – both governmental and non-governmental (like medical care), and reservation in jobs reservation. While there has been a growing visibility of disability rights in both global and Indian public discourses over the last decades, the “medicalised approach” (treating disability primarily as a biological challenge) to addressing the disabled individual without simultaneously addressing the dominate socio-cultural beliefs and biases that keep alive the notion of disability as “suffering”, “incapability”, someone in need of “charity.” (Jeffery and Singal, 2008, pg. 24) Dis-ability is not meanly a biological category – whether one is physically impaired or not, but also a socio-political as well an economic one. Jeffery and Singal in “Measuring Disability in India” published in the Economic and Political Weekly concludes that disability is a “transitory process” with “insidious changes,” with a person’s ability to function in society, state or market determined by their immediate environment.

A Problem of Social Utility

The society, sustains itself upon utility, whereby functioning members must contribute valued skills, resources, or effort to receive rewards. Herein, the society is a system of interpersonal interactions and relations built upon considerations of mutual benefit and preservation – a prompt of quid pro quo amongst individuals. Society, therefore, deals with apathy towards the “different” and “broken.” What cannot be of proper use is casted away, thereby having an innate proto-eugenic bias. Throughout history, culture, religion (explaining disability as outcomes of karma) and traditions have reinforced the unacceptability of the disabled as ‘burdens’ upon family, “abominations” of a divine curse or a punishment for sins, vilified as outcasts, and a nuisance to social good. It is this lived experience of lacking social value that impedes disability.

While the initially transformative Indian state had addressed towards disadvantaged segment in top-down welfare programmes, post-1991 liberalization and the consequent decay of the developmental state, to make way from multi-lateral governance vis-à-vis an active civil society and market, has been accompanied by an ambivalent posture towards in social policies. The state too is derived from the institutionalization of collective needs in society, operates in terms of a continuous cyclical loops of inputs, outputs and feedback, with groups in exclusion of those segments less-than-capable of vocalizing their interests to the government apparatus. Thus, the disabled find themselves conveniently forgotten, marginalized, and stigmatized in public and policy. The government acts on unilateral impulses towards the social security for disability under the prevailing “charity/tragedy model” of addressing the disabled. Yet the government has so far kept the disabled away from participatory policy making, and equally civil society activism seems to restrict itself to service delivery through creation of awareness of government initiatives, providing shelter from material and moral abandonment, and skill enhancements, etcetera, hindering the disabled from attaining agency, as well as making no headway into overturning the prejudicial notions of society. (Jeffery and Singal, 2008, pg. 23)

So much of being disabled lies in the characterization of the physically impaired. So much of externalizing the disabled from society lies in the sympathising gaze. So much of it is compounded to by the treatment of the disabled as a liable. So much of the exclusion stems from otherizing them as “abnormal(s)” in society. It is the stigma that disabled is not capable of the so-called “normal functions” of life that creates the greater part of disability – not simply a bodily experience, but one that is reiterated as a lived experience, the reality of living each day as a disabled. Thus, there is a need to recognize that disability cannot be treated through social welfare policies alone, but must be rooted in addressing the underlying problem of locating social utility in the disabled. Thus, empowering the disabled can be brough about by a more nuanced treatment of the multilayered disadvantages that disabled individuals face in specific socio-political contexts.

A contextual solution to society’s problems can be answered only through an embedded social institution itself, capable of shifting the view on the disabled subject. While Nilika Mehrotra in Disability Rights Movements in India: Politics and Practice, published in Economic and Political Weekly pointed towards the shrinking community and family support mechanisms, and at the same time increased co-option of disability rights issues in the face of a de-politicised and a professionalized trend in civil society activism for the disabled, in order to urge increased need for legal intervention, disabled-friendly policies and a supportive bureaucracy to removal social. Yet legislation through coercive instruments of the state does not inspire rather imposes, making no substantive social transformation towards disability, which is not only biological but also socio-political. At the same time, while the media is a powerful medium of social change, discourses are reactionary to public opinion, where the media – that has increasingly been critiqued for its profit- driven style – shows people what they want to see (no longer news but stories), making media hesitant to reflect minority opinion or provide space to marginalized groups. Herein, education is the most suitable candidate.

Solutions through Education

Education, formal and informal, is a human right: a sacrosanct entitlement by virtue of human birth. It is a process of building the ‘self’ and propelling consciousness of personality and character. It is the v-e-r-y function of transmitting survival instincts, social communication, and cultural bonds upon which human civilizations are built. Through skills and knowledge imparted, innovations, achievements, and contribution towards fellow groups and society-at-large is expected…extracted. Thus, education is an indispensable necessity to being an accepted, acknowledged, and respected member of society. Yet, education too conducts itself as the give and take agreement in society. What fails this criterion is excluded. In this conundrum, the disabled find themselves a hostage of cultural stigma, social apathy, and systemic exclusion. Although much “sympathized” for in the 21st century post-modern world, the disabled have remained out of sight from social (re)consideration of their true value and out of place from education systems. The accommodation of disabled into the educated ecosystem is financially costly, where only well-off parents can employ personalized educators for children with special needs, while others must put their children through regular schooling or no schooling at all, thus being left behind.

Even as liberal rights regimes incorporate education as a Platonic endowment and as a human claim, the simple truth of uncatered groups persists, not far from the evident and rising inaccessibility and unaffordability of modern education. To anoint the disabled into regular curriculum is to treat ‘unequals’ equally. Those facing challenged senses can only be provided opportunities by catering to special needs, inclusive environments, multi-modelled learning, determined learning and constant investment in treatment. Surely, non can contest the admissibility of the impaired for social security and pertinent access to common resources, as qualified and just obligation of the state. While the enacted Persons with Disabilities Act, 2016 has reinforced the citizenship rights, human dignity and opportunities for disabled individuals, there has not been any apparent or considerable consolidated the disability rights group identities in the Indian context. Moreover, policies towards the disabled in India has focused more on accessibility than inclusion. It is not enough to make schools accessible to disabled students, but also consider if the teaching-learning process and student-teacher environment provide an inclusive process, beyond simple technical processes. Although India reserves five percent seats [Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 & Rights of Persons with Disabilities Rules, 2017] in public institutions, no state is capable of or has political will to set aside funds for proper integration of the disabled into education and thereby in daily life. a narrow focus on jobs reservations and concessions, brail indicators on lifts, ATMs and metro-trains can only do so little in truly make society livable for the impaired.

Must society not resolve to bring about substantive changes in the failing system of education to reintegrate equal human beings into the fold of ‘develop-ing human’? The first sure step is to stop ‘sympathizing’ or helping out of “pity” (Mehrotra, 2011, pg. 71-72), and begin ‘empathizing’ with fellow mates of our own kind – to accept the disabled as one of “us.” This can only do through sensitization. We all were born incomplete; it is life and living that rounds it off. Education, thus not only secures a means of livelihood, industry, and agency for the disabled, that both safeguard interests and brings efficacy for the community in political processes, but also ensures that state assurances for the community is complemented by a canopy of social acceptance and encouragement. This greatly solicitated systematic change in the education system would transform the modem of socialization into an inspiration for social seeking, accepting and upliftment: education as empowerment, education as emancipation, moving away from charity to self-advocacy.

The surest leap between disabled and differently-abled is catapulted through education alone.

(Author: Allen David Simon is an M.A. (Political Science) student at St. Xavier’s College (Autonomous), Kolkata (University of Calcutta). He is an editor at the A Different View blog, an associate publisher at The ArmChair Journal and a contributor to Student Research Committees under the International Association of Political Science Students. He can be reached at linkedin.com/in/allen-david-simon or allendavidsimon2003[at]gmail.com.)

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