1. Q. Please tell us a little bit about your academic background and your work.

Amar: First of all, I would like to thank Aura Magazine for giving me an opportunity to speak about my research and my experience in higher education institutions as a student and as a person with a disability. I have completed my graduation and post-graduation in political science from St Xavier’s College, Mumbai and Jawaharlal Nehru University, New Delhi, respectively. After this, I completed my MPhil in Educational Planning and Administration from NIEPA, New Delhi. In my MPhil dissertation, I attempted to understand how the institutional culture of academic institutions shape the academic and non-academic experiences of students with disability in higher education institutions. Currently, I am pursuing my PhD in Political Science from the Centre for Political Studies at JNU.

In my PhD work, I am trying to understand how the theoretical constructs of rights, welfare and charity are pursued and understood by people with disability (henceforth PWD) in their engagement with the state and society. I am trying to map the disability discourse around welfare, charity and rights ideas by focusing on engagement between PWD and the state, judicial discourse around disability rights in India and the functioning of disabled people’s organizations.

2. Q. It is considered that education is a means to liberation or social change. But it’s equally true that the current education structure replicates and continues many of the existing hierarchies in Indian society, such as caste, gender, or disability. What are your thoughts on this?

Amar: Personally, getting educated has positively impacted my life, and it has helped me gain a sense of independence, self-respect and dignity. I do not see any other robust mechanism compared to education to get empowered and work towards the goals of social mobility for marginalized communities. While saying that, I also recognize how the different hierarchies of caste, tribe, gender, disability, and religious identity shape students’ educational journey. In this case, the role of various stakeholders such as disability-related resource units, equal opportunity cells, representation of students and teachers from marginalized communities in different academic and non-academic institutional bodies, and administrative and non-teaching staff is significant. My MPhil research suggests that a well-functioning disability resource unit helps students with disabilities to overcome attitudinal, infrastructural, and resource-related barriers. I think the role played by student organizations and support groups are of importance in holding different stakeholders accountable and creating a discourse around assertive and inclusive culture within the campuses.

3. Q. How is disability understood in the Indian context, socially, and at a policy level? (You can answer this purely theoretically, personally or a mix of both).

Amar: People with disability are pursued differently at the level of state and society based on their roles. For instance, disability studies scholars have tried exploring how the phenomena of disability are pursued differently in different social settings such as rural Haryana, rehabilitation institutions, schools etc. (Mehrotra, 2013; Staples, 2018). I feel religion, a person’s functioning and ability to do any work (productivity concerns), and the impact of media significantly shape societal perception about disability. For instance, in working-class communities and rural societies individual’s disability is assessed by the non-disabled people based on how the individual contributes to the day-to-day work life in the society. Persons with disability face attitudinal barriers like people treating them as someone who needs mercy, charity and pity. However, I feel that education and advocacy change society’s perceptions of people with disability.

At the level of policy, the definition of disability reflects the state’s shrinking hand from welfare responsibilities, which can be seen in decreased allotment of funds and spending to the department of empowerment of persons with disability, closing special schools and hostels for people with disability etc. The state’s excessive focus on rehabilitation also shows how the disability as the phenomenon is treated as a ‘bodily deficit’ and should be cured.

Disability rights activists and scholars have utilized the model’s approach to articulate their claims for non-discrimination and justice. There are two significant models that help us understand the phenomena of disability and the activism for disability rights, namely, the medical and social models of disability. The medical model of disability, which disability rights activists have criticized, construes an individual’s disability as the result of bodily deficit, arguing for curing the physical impairment. On the other hand, the social model of disability defines disability as a phenomenon that results from societal arrangements that marginalize people with disability and privilege non-disabled people. For instance, the lack of provisioning of ramps and accessible toilets in public places creates barriers for people with disability. The shift from medical to social model of disability is characteristic of the development of the disability rights movement in India. This development also reflects the change in the definition of disability from the Persons with Disabilities Act of 1995 to the Rights of Persons with Disabilities Act 2016. This shift in the definition can also be attributed to the passing of the United Nations Convention on Rights of Persons with Disabilities (UNCRPD, 2006) and India’s subsequent ratification.

At the policy level, the state recognizes the beneficiaries of the affirmative action policies and various other provisions for Persons with Disability by defining the criterion of “benchmark disability” (one whose disability has been certified by medical authorities in a percentage of forty per cent or more). By defining disability through the ‘benchmark disability’ criteria, the state disempowers the larger section of persons with disabilities who do not fulfil the state’s criteria. Subsequently, it allows the medical fraternity to act as a gatekeeper for access to affirmative action policies and, consequently, the state to decide on their ‘targeted beneficiaries’ of social welfare.

The legal definition of Persons with Disability and its societal understanding, on the other hand, differs drastically. The perception and attitude toward persons with disability in society further marginalize people with disability. For instance, accessing reasonable accommodation within educational institutions is generally a nightmare for persons with disability. One has to struggle at the hands of the higher education institutions’ state’s administrative machinery, which is not sensitive or has not been sensitized towards their needs. The demand for reasonable accommodation is generally considered with suspicion of faking disability or misusing reasonable accommodation. Thus, this shows the difference in the definition of disability at the policy level, its implementation in everyday society, and its pursuance.

4. Q. What are the intersections of disability with other identity markers such as gender or caste?

Amar: The framework of intersectionality has helped social scientists understand the diverse faces of oppression experienced by marginalized social groups at the level of structural barriers and representational aspects of it. If we consider the intersectional structures of gender and disability, we can understand the vulnerability experienced by women with disability. The Saksham Committee Report submitted to UGC suggests measures to tackle sexual harassment cases in educational institutions and has identified women with a disability as one of the most vulnerable social groups to the acts of sexual harassment. Disability studies scholars Anita Ghai, Nandini Ghosh and Nilika Mehrotra, have focussed their research on understanding the experiences of women with a disability and how the intersection of gender and disability further hinders their upliftment (Ghai, 2001; Ghosh, 2016; Mehrotra, 2013).

By employing the framework of intersectionality at the representation level, we find a higher dropout rate of women with a disability compared to men with a disability from post-secondary to higher education.

Around the intersections of caste and disability, disability studies scholars have explained the marginalization of Dalits and Adivasis who are disabled compared to their upper-caste counterparts (Mehrotra, 2013). However, I have not come across many works employing qualitative methodology or discussing narratives of Dalits and Adivasis with disabilities which I think should be taken up by researchers from disability studies.

5. Q. There have been many linguistic debates within the field of disability – the use of the word itself and the questions of sensitivity or progressive language. How important are these debates?

Amar: The debates around nomenclature regarding referring people with disability are significant in understanding how they shape the disability discourse and how people with disability as a social group identify themselves. I use the terms ‘people with disability’ and ‘disabled persons’ interchangeably in my academic writing and everyday conversations. Disability rights activists give different rationales for utilizing the terms people with disability and disabled persons. For instance, those advocating the term ‘people with disability’ believe that ‘person-first’ language helps not reduce an individual to their disability. Those advocating the term’ disabled person’ believe it is affirmative and allows them to identify positively with this social group. Disability rights activists have taken strong objection to the term ‘Divyagjan’ coined by the present NDA government because it associates the disability of an individual with divinity and further strengthens the prejudices along religious lines. ‘Divyangjan’ as a term has also facilitated the current government to pursue its agenda of propagating the dominant religion’s viewpoint in public discourse on disability. The term ‘differently-abled,’ which I have observed mainly is used by non-disabled people around me, has been criticized for its implicit and excessive focus on the ability of an individual to perform some tasks.

6. Q. What has been your experience of the educational sphere and those around you? Is there a significant movement for associational life, organizations for persons with disabilities and community movements within the higher education arena, and how have they been received by the broader university/college community?

Amar: As I said earlier, I value education in my life for the sense of independence, self-respect and dignity it instils in me. I have completed my schooling in the integrated model of schooling, where children with special needs are given admissions with their non-disabled counterparts based on specific criteria developed by these schools on how the school assesses the child to be educated in that school. I recognize the significance of supportive peer groups and teachers in assisting me with the barriers I experienced in my school education. If I look back and reflect, the idea of inclusive education was just getting popularised in the Indian context when I was completing my schooling. I wish my school could have been more aware and sensitive toward the needs of students with disabilities. I completed my graduation from St Xaviers College, Mumbai, which has one of the best-institutionalized mechanisms to support and respond to the needs of students with disabilities, named Xavier’s Research Centre for Visually Challenged (XRCVC). XRCVC works closely with students with disability to understand their needs and provides them with the necessary support. XRCVC also conducts disability sensitization programmes and events every year to sensitize different stakeholders in our college as well as stakeholders with whom we come in everyday interaction, such as bus transport staff, banking staff etc. The continuous engagement of XRCVC and my college with different stakeholders resulted in the creation of inclusive institutional culture in my college, which positively impacted the experiences of students with and without disabilities.

During my post-graduate education at JNU, it was for the first time I experienced associational living with my friends who have a disability. JNU has an organization of students with visual impairment named “JNU Vision Forum.” JNU Vision Forum has been one of the first organizations on the university campuses, which has worked around the issues of advocacy, provisioning of resources, challenging violations of reservation policy in the court etc. I have not seen any other significant organizational movements in higher education institutions compared to the cities of Delhi and Mumbai.

After I reflect on my journey as a student and researcher with a disability, I will say that people with disability are missing from the discourse around diversity in colleges and universities and student activism in higher education institutions. This can be attributed to a lack of recognition of people with disability as one social group, which further marginalizes them as the issues experienced by them. Consequently, they do not find references in everyday discussions on university campuses. The associational life of disability rights student organizations witnesses different dilemmas in deciding on modes of engagement with administration, non-disabled students and the teacher’s community. I think the dilemmas related to engagement with the administration, which is representative of the state, comes from the different structural and representational barriers experienced by people with disability to articulate their claims for the inclusive campus in a rights-based approach.

7. Q. Finally – do you have any inspirations or heroes when it comes to the spread of the true, liberatory idea of education in India or beyond?

Amar: I draw inspiration from Dr B R Ambedkar to spread the true liberatory meaning of education which I feel has the potential to allow an individual an opportunity to get social mobility and challenge the oppressive norms of society along the lines of caste, gender, and disability. I also draw inspiration from Anoop Kumar sir, under whose leadership Nalanda academy is working towards educating students from underprivileged and marginalized communities. The role played by institutions such as Nalanda Academy, Tritiya Ratna, Bahujan Economics (editor’s note: they have been previously featured in Aura e-Magazine), and Eklavya Academy has facilitated overcoming barriers marginalized communities face and gives them an opportunity to reach higher education institutions.