Beyond Awareness By Shivani Singh

 Critical Disability Studies (CDS) has increasingly challenged the dominant understandings of disability that frame disabled people mostly through the deficit lenses or through dependence or pathology. CDS seeks to identify disabling social systems, institutions, environments and cultural attitudes rather than focus on the body or mind of the person in need (Goodley et al., 2021). Reading through these views profoundly changed my understanding of disability, care, accessibility and inclusion, and these ideas have had a lasting impact on my own academic research and lived experience. As a psychology student, I have been involved in research related to disabilities and as a shadow teacher for a child, I kept coming across an issue of formal inclusion and lived accessibility. Though legal provisions, educational adjustments and institutional arrangements might be present, meaningful inclusion is frequently incomplete, tenuous and uneven. 

This conflict was especially apparent in my dissertation work and my theoretical paper presentation on the Rights of Persons with Disabilities (RPwD) Act, 2016. (Indian Act). In my theoretical paper, I applied Bronfenbrenner's ecological systems framework to explore the interaction between various systems that affect the experiences of disability in the family, school, institutional, healthcare, and social attitudes (Singh & Arora, 2016). This was a framework that enabled me to consider disability not just on an individual basis, but relationally and structurally. While the RPwD Act marks an important shift in the disability discourse in India from rights to the strategy of accessibility and inclusion, my analysis indicated that the response of institutions, communities and systems is a critical factor in accessibility and inclusion. The legal vs. lived distinction became a key part of my disability understanding. 

The RPwD Act, 2016 was an important change in the disability policy in India, bringing in a broader definition of disabilities and a focus on equality, inclusion and non-discrimination (Government of India, 2016). But Critical Disability Studies invites us to question whether or not legal recognition can break down ableist structures. It is not enough to look at disability solely from policy inclusion as ableism is inherent in social, educational and institutional structures themselves (Meekosha and Shuttleworth, 2009). In a similar fashion, Anita Ghai (2015) challenges situations in which disability is dealt with in the construct of rehabilitation or charity in Indian settings, where structural exclusion and social inequality are not comprehensively addressed and discussed. With these thoughts in mind, I was able to gain deeper insight into the ideas I saw during my research and field experiences. 

I conducted research in my dissertation graduate study on the awareness of RPwD Act by caregivers of children with disabilities and how awareness of RPwD Act was associated with caregiver quality of life and wellbeing. A mixed methods design was used, such as thematic analysis of the subjective responses shared by caregivers. As I built the awareness checklist, and listened deeply to participant stories, I started to see that awareness didn't always translate to accessibility or support. Many caregivers had some knowledge of the rights of people with disability and of what kinds of accommodations were possible, but also encountered delays in moving through the institutions, information that was not accessible, uncertainty about services available, and challenges in navigating educational or healthcare institutions. Thematic analysis revealed common themes regarding the emotional cost of care, institutional barriers, bureaucratic difficulties and the burden of negotiating access to support systems. These experiences highlighted an important realisation: inclusion does not equal the presence of policy. 

My dissertation findings also revealed the unseen work of caring, which is so commonplace. In addition to providing emotional and practical support, caregivers needed to advocate, coordinate, navigate systems and engage in continual negotiation with often opaque and inaccessible systems. This is in line with Mia Mingus' (2017) notion of interdependence and intimacy of access, which calls into question the assumption of independence as the ideal human state. Rather, the concept of disability justice acknowledges that caring, dependence, and supportive relationships are common and normal areas of human experience. However, the work of caring is often devalued and un-supported in institutional settings. In my research, the emotional burden of caregivers was not just related to the disability itself, but to the constant struggle to access rights, information, accommodations and recognition. 

 These reflections were complicated and deepened further as a shadow teacher. It was highly rewarding and interesting to work closely with a child with autism. In many aspects, the child was very high functioning and very perceptive, creative and emotionally intelligent. I saw at the same time the positive and confining effects of being seen as “special.” Some areas tried to welcome him, but others felt that they were not welcoming him in a way that was inclusive. This was especially evident in the nuances of social interaction, comments from peers, expectations for the classroom and future worries from adults who interacted with him. Adjustment, employability, independence and “fitting into society” were frequently raised questions, reflecting the conditional nature of inclusion in relation to closeness to the norm.

The most important thing to learn from this experience is that being present in a classroom is not good enough to be considered as being included. A child might be physically in the same school as others but be emotionally, socially and pedagogically excluded from the school. This resonates strongly with Dolmage's (2017) work on academic ableism, which posits that academic institutions are still affirming their commitment to inclusiveness while continuing to uphold the norms of academic communication, behaviour, productivity and participation. I started to see that inclusion was sometimes seen as a duty on the process of inclusion and not as a change in the culture of education. Accommodations were sometimes presented in an apparent “checklist” manner rather than a relationally responsive approach. 

This also affected my own perception of what access was. Before I became more involved in CDS frameworks, I sometimes envisioned accessibility as ramps, resource rooms, accommodations, etc.Before I get into the details of CDS frameworks, I would often think of accessibility as ramps, resource rooms, and accommodations. But, I was challenged to consider not only physical access, but also my relationship to the text, emotionality of the text, communicative access, and pedagogical access, by the work of other scholars like Hamraie (2017) and Garland-Thomson (2012). Accessibility is not just about getting into a building; it's about the ability to participate without constantly negotiating one's legitimacy, to belong, to communicate, to be. Communities of people with disabilities and caregivers remain largely responsible for making changes to their environments, while systems themselves remain unchanged in many educational and institutional settings. 

I was able to see this when I was a shadow teacher as the course discussions around anti-ableist pedagogies and inclusive environments really resonated. In order to create an anti-ableist pedagogy we must challenge the assumptions that are taken for granted in our educational systems, not just add accommodations to the existing system of exclusion (Ktenidis, 2025). As I think about it, it can be performative to be included in an institution when the attitudes and expectations are not. Disabled children are often required to fit into systems that function according to the norm and caregivers are expected to function as mediators between disabled child and inaccessible systems. 

 Another thought change that I had was that, disability isn't just a medical or psychological diagnosis, but a political and relational category. From the beginning my interactions with disability were based on concepts like caregiver stress, quality of life, coping and mental health as a psychology student. These are still significant, but Critical Disability Studies makes me consider how an inaccessible system and ableist environment contribute to psychological distress itself. Goodley et al. (2021) contend that disability is not a standalone phenomenon, but rather part of a wider social configuration that shapes the social valuing of whose bodies, behaviour and ways of being. This thinking gained special significance during my reflections on caregivers' stories from my dissertation in which emotional exhaustion frequently manifested itself not only due to the burden of caring, but also due to systemic and institutional failures, uncertainty and exclusion. 

It has been important to note the reflective process also altered my perspective of the RPwD Act itself. I am no longer thinking of legislation as the end goal of inclusion and see it as a component of a much longer journey of cultural, institutional and structural change. Awareness is crucial but awareness isn't enough; it won't make inaccessible attitudes, education, policy, or assumptions socially invisible. Institutions must go beyond complying with accessibility standards to being accountable, responsive, and anti-ableist in order to be truly accessible. It involves acknowledging people with disability and carers as experts, agents and lived knowledge. 

Finally, the Critical Disability Studies helped to re-think my own research and experiences of the field. Through my experiences as a shadow teacher, my theoretical paper, and my dissertation work, I became aware of the ways that disability is not simply a result of the diagnosis or the impairment, but is also created in relationship, systems, and institutions, and in social expectations. While the RPwD Act 2016 is a positive step towards rights-based inclusion in India, there is a long way to go for meaningful accessibility. It requires shifts in the culture of institutions, in learning, in public perceptions and in the knowledge and understanding of care. This has led me to consider accessibility as something more than an accommodation for a select few; it is an ethical and collective responsibility that fundamentally changes the notion of 'belonging', 'participation' and 'human value' in society.

Reference

Dolmage, J. T. (2017). Academic ableism: Disability and higher education. University of Michigan Press. https://doi.org/10.3998/mpub.9708722 

 Ghai, A. (2015). Rethinking disability in India. Routledge India. 

 Goodley, D. (2024). Depathologising the university. Pedagogy, Culture & Society, 18. https://doi.org/10.1080/14681366.2024.2316007 

 Goodley, D., Lawthom, R., Liddiard, K., & Runswick-Cole, K. (2021). Key concerns for critical disability studies. The International Journal of Disability and Social Justice, 1(1), 27–49. https://doi.org/10.13169/intljofdissocjus.1.1.0027 

 Government of India. (2016). The Rights of Persons with Disabilities Act, 2016. Gazette of India. 

Hamraie, A. (2017). Building access: Universal design and the politics of disability. University of Minnesota Press. 

Kafer, A. (2013). Feminist, queer, crip. Indiana University Press. 

Ktenidis, A. (2025). Questioning ableism in education through anti-ableist pedagogies. British Educational Research Association. https://www.bera.ac.uk/blog/questioning-ableism-in-education-through-anti-ableist-pedagogies

Meekosha, H., & Shuttleworth, R. (2009). What’s so “critical” about critical disability studies? Australian Journal of Human Rights, 15(1), 47–75. https://doi.org/10.1080/1323238X.2009.11910861 

 Mingus, M. (2017, April 12). Access intimacy, interdependence and disability justice. Leaving Evidence. https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-dis ability-justice/ 

Singh, S & Arora, M From protection to participation: A theoretical analysis of the Rights of Persons with Disabilities Act, 2016 as a mental health precursor for families. Paper presented at the One-day International Conference on Flourishing Minds, Flourishing Societies: Psychological Pathways in a Changing World, Indraprastha College for Women, 10 April 2026. (Unpublished)