Online Symposium in Delhi

Online Disability Matters Symposium: Film recording

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Inclusive education in India: A personal exploration
Aparna Sachdev (she/her)
Aparna624@gmail.com
Saksham Trust, a DPO, and Indian Institute of Technology Delhi

Aparna Sachdev comes from an English Studies disciplinary background, and works on assistive technology testing, documentation and training as part of a joint project between Saksham Trust, a DPO, and Indian Institute of Technology Delhi. Lived experience of the Indian mainstream education system as a disabled person and a longstanding enthusiasm for assistive technology galvanized her interest in Disability Studies. Her research interests include inclusive education, disabled children's childhood studies, and disability and technology. 

To reference this paper: Sachdev, A. (2024). Inclusive education in India: A personal exploration.  In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

In writing this paper, I have kept the following questions in mind: What forms does does inclusive education in India take? How is it that Indian cultural specificities have (re)shaped a concept whose (first?) prototype emerged under and responded to a very different context? And if the idea of putting inclusive education and critical disability studies in dialogue with one another is to make disabled people's lives more viable in some way, is CDS enough? 

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India perhaps has as many inclusive education models as it has disabled students enrolled in mainstream schools. Varying along axes of situatedness (rural/urban, government/private), and with respect to factors such as variation in teacher preparedness (actual or perceived), available professional special education support (Johansson, Samson and Singhal, 2023), the plurality of approaches to the education of disabled students in mainstream classrooms tends to fall somewhere in the grey area on a spectrum between integrated and inclusive education [1]. As a blind person mainstreamed right from kindergarten in a tier-3 Indian city, I locate my school experience of the 5 mainstream schools I studied in, at various points in this spectrum. I experienced some school settings as more inclusive than others, based on concrete criteria like (infra)structural and attitudinal factors, and less tangible factors such as perceived social inclusion, perceived acceptance, sense of belonging and wellbeing etc, that are harder to pin down, define or measure. 

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Being a postcolonial majority-world country, grappling with the concerns that are attendant on that identity, India concurrently did not adopt inclusive education as defined by the minority world in the same way or in the same timeline as the latter. Additionally, India’s mainstreaming effort as regards disabled students has historically tended towards integration. [2] India’s first official forays into inclusive education as we understand it today occurred in the 1990s, in response to the rallying-cry of UNESCO’s Salamanca Statement that called for inclusive education worldwide. 

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Every major piece of Indian legislation on education for the disabled (starting from the Persons with Disabilities Act of 1995 onward) has attempted to address the tripartite requirement, widely acknowledged (by the minority world that is at the vanguard of inclusive education efforts) as essential for successful inclusive education reform. “policy that supports inclusive education, adequately trained educators, and … special teaching resources and…specially trained educational consultants” (Sharma, Moore and Sonwane 2009). But the integration approach, that intermediate step on the Indian trajectory of inclusive education (Sharma and Deppeler 2005) has proven hard to leave behind, and inclusion efforts still frequently pan out as integrationist in practise (Fernandes 2022). 

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This paper attempts to examine an inclusive education situation in which all three of the abovementioned gaps have been plugged to a significant degree, to understand something about the effectiveness and applicability of minority-world standards on majority world contexts. I take as the subject of this paper a third-party evaluative research I had the opportunity to carry out in 2022, on the inclusive education project conceptualised by the Xavier’s Resource Center for the Visually Challenged (XRCVC )[3], with the latter’s valuable assistance. The program had gone through four iterations of inclusive education support between 2014-2021 in an attempt to arrive at a uniform and standardised model of support that centred the disabled child, whilst ensuring that it spoke to the Indian context and responded optimally to stakeholder needs. I undertake to put my understanding of critical disability studies in dialogue with my understanding of inclusive education in the Indian context, both necessarily mediated by my positionality as an urban-dwelling, early-career blind woman born in a post-legislative, postcolonial majority-world country. I do this by reflecting on some findings of interest from the study on the XRCVC Inclusive Education Program.

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The program started out with the standard western IEP (Individualised Education Plan) approach, but found it logistically unviable since it was inadequately supported by legislation and private school management, and lack of proportionate special educator resources. Meanwhile,  it became apparent that a collective-training approach (in the context of special skills) that grouped together students with similar requirements would be a far more efficacious use of limited special education resources including personnel, time, and materials. This falls in line with the widely-expressed idea that uncritically exporting disability studies concepts from the minority world to the majority world whilst disregarding the epistemic positions that shaped these concepts (Rao and Kalyanpur 2020; Grech 2011; Grech 2015; Addlakha 2013; Jigyel 2020) is inappropriate at best and neo-colonialist at worst. A CDS approach would prioritise epistemic and experiential insights from the majority world and attempt to decenter hegemonic global North concepts (Grech 2015).

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In the study, of the four stakeholder groups consisting of disabled students, parents, mainstream school teachers and special educators, two or more stakeholders collectively and consistently identified the following three factors as being foundational to a successful inclusive education experience: special education intervention at school, advocacy, and parental support. Interestingly, in the presence of the same special education support for all students, 11% of the student participants in the study reported a sub-par inclusion experience with very little teacher and peer support at school, and lack of academic help from parents. Class position accounted for the absence of two of the three foundational factors mentioned above: government-school education, although more economical, is rarely ever open to external, non-governmental intervention, making special education intervention unviable, and parents’ educational backgrounds made it difficult for them to either provide academic help or effectively advocate for accessibility with the school. This underscores critical disability studies’ critique of conventional disability studies for the latter’s single identity-based organising (Ghai 2002; Meekosha and Shuttleworth 2009; Nishida 2019), and the collusive nature of marginalised identities in compounding educational disadvantage (Ashby et al, 2020). 

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The participant sample was by necessity asymmetrical in terms of duration of special education training, special education interventions at school, etc. In that context, in the absence of structured special education interventions, advocacy (one of the three crucial factors identified above) ensured that students were included rather than merely integrated. Contrary to the prevalent western idea of advocacy as a practise geared towards claiming entitlements provided as part of a rights-based framework, advocacy in the Indian context functions by appealing to the collective objective of making inclusion work   (Rao and Kalyanpur, 2020). 

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On the flipside, several observations in the study appear consistent with minority-world research: the crucial role of parents in ensuring an inclusive education experience (UNICEF 2014; Forlin et al 2015; Sharma 2022), beyond academic inclusion, “polite” forms of discrimination at school that delimit disabled children’s socialisation and play (Goodley and Runswick-Cole 2010), the determining effect of school management in implementing inclusion in a successful top-down approach (Ryan 2010; Sharma et al 2015). As is evident, some disability studies research and analysis responds better than others to majority world contexts (Rao and Kalyanpur 2015). 

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Broadly, disability studies “…is not only about theory or research, but it is about lives, how we live, and how we relate with one another." (Nishida 2019). To repurpose black feminist scholar Barbara Smith’s assertions for our purposes here – “if lifting… oppression is not a priority to you, then its problematic…”. How we live and relate with one another is highly context-driven, as is oppression. Evidently, there can be no one universal truth of inclusive education theory or praxis. There is only knowledge, and knowledge is inextricably intertwined in a mutual give-and-take with cultural specificity. In this context, critical disability praxis emerges as a far more potent entity to set in dialogue with inclusive education, to liaise with it in ways that utilize the interdisciplinary, interdependent, intersectional potential of critical disability studies towards an emancipatory educational praxis. In the context of the XRCVC Inclusive Education study, the program chose an observation-and feedback-driven process of change, wherein identified shortcomings fed into the future change agenda. That is one example of a model that centers local epistemic positions and is therefore a good fit for the particularities of contexts. I find Nishida’s  three principles of critical disability praxis (dismantling the knowledge hierarchy, cultivating intimate community-academia relationships, and engaging in action) (Nishida 2019) to be a good starting point from which to respond productively and proactively to the rallying-cry for locally relevant and socially just action. To circle back to where we started from, it is perhaps understandable for a plurality of contexts to give rise to a corresponding plurality of approaches to inclusive education, and for there to be a plurality of attributed reasons for its inadequate implementation: insufficiency of teacher preparation, inadequate special education support, skewed ratio of special educators to disabled students, scarcity of information or material resources, unsatisfactory contribution of school management towards the inclusion agenda, or, barring all of these, a sheer failure of the imagination in conceptualizing inclusion in a way that puts focus where it belongs: on interrogating exclusion. 

Notes:

1. Both integrated and inclusive education systems aim to bring disabled children into the mainstream classroom. However, they are fundamentally different in their approach: integrated education is assimilationist, in that disabled students are expected to adapt to the pre-existing structure, pedagogy etc, whereas inclusive education adapts and proactively responds to students’ varying needs. Against this backdrop, the concepts of integrated and inclusive education in India appear less like two separate and distinct categories, and more like two ends of a spectrum, with educational experiences of most children with disabilities falling somewhere between the two extremes. 
2. The Kothari Commission (1966) made a recommendation for universal education which was extended to physically disabled children in the National Education Policy (1968). This was followed by  the Integrated Education for Disabled Children (IEDC) in 1974 and the Program Integrated Education for the Disabled (PIED) in 1987.
3. The study, titled “Off to School VI Go: A Report on XRCVC’s Inclusive Education Project”, can be accessed here:

References

• Addlakha, R. "Introduction." Disability Studies in India: Global Discourses and Local Realities, edited by R. Addlakha, Routledge, 2013, pp. 1–31.
• Ashby, Christine, et al. "Mapping Access and Opportunity for Students with Disabilities: Urban K–8 Schools as Pockets of Privilege." The Educational Forum, vol. 84, no. 4, 2020, pp. 356-376. DOI: 10.1080/00131725.2020.1801051.
• Fernandes, Kim. "Inclusive Education in Practice: Disability, 'Special Needs' and the (Re)production of Normativity in Indian Childhoods." Children's Geographies, vol. 20, no. 6, 2022, pp. 818-831. DOI: 10.1080/14733285.2022.2124845.
• Forlin, Chris, et al. "Knowledge and Perceived Social Norm Predict Parents' Attitudes towards Inclusive Education." International Journal of Inclusive Education, vol. 19, no. 10, 2015, pp. 1052-1067. DOI: 10.1080/13603116.2015.1037866.
• Ghai, Anita. "Disabled Women: An Excluded Agenda of Indian Feminism." Hypatia, vol. 17, no. 3, 2002, pp. 49-66.
• Goodley, Dan, and Katherine Runswick‐Cole. "Emancipating Play: Dis/abled Children, Development and Deconstruction." Disability & Society, vol. 25, no. 4, 2010, pp. 499-512. DOI: 10.1080/09687591003755914.
• Grech, Shaun. "Decolonising Eurocentric Disability Studies: Why Colonialism Matters in the Disability and Global South Debate." Social Identities, vol. 21, no. 1, 2015, pp. 6-21. DOI: 10.1080/13504630.2014.995347.
• Grech, Shaun. "Recolonising Debates or Perpetuated Coloniality? Decentring the Spaces of Disability, Development and Community in the Global South." International Journal of Inclusive Education, vol. 15, no. 1, February 2011, pp. 87-100. DOI: 10.1080/13603116.2010.496198.
• Jigyel, Karma, et al. "Benefits and Concerns: Parents' Perceptions of Inclusive Schooling for Children with Special Educational Needs (SEN) in Bhutan." International Journal of Inclusive Education, vol. 24, no. 10, 2020, pp. 1064-1080. DOI: 10.1080/13603116.2018.1511761.
• Meekosha, Helen, and Russell Shuttleworth. "What's So 'Critical' about Critical Disability Studies?" Australian Journal of Human Rights, vol. 15, no. 1, 2009, pp. 47-75. DOI: 10.1080/1323238X.2009.11910861.
• Nishida, Akemi. "Critical Disability Praxis." Manifestos for the Future of Critical Disability Studies Volume 1, edited by Katie Ellis et al., Routledge, 2019.
• Rao, Shridevi, and Maya Kalyanpur. "South Asia and Disability Studies: Time for a Conversation." South Asia and Disability Studies, Peter Lang Publishing, 2015.
• Rao, Shridevi, and Maya Kalyanpur. "Universal Notions of Development and Disability: Towards Whose Imagined Vision." Disability and the Global South, vol. 7, no. 1, 2022, pp. 1830-1851.
• Ryan, J. "Establishing Inclusion in a New School: The Role of Principal Leadership." Exceptionality Education International, vol. 20, no. 2, 2010, pp. 6–24.
• Sharma, Umesh et al. "Examining Parental Perception of Inclusive Education." Frontiers in Education, 2022.
• Sharma, Umesh et al. "Solomon Islands School Leaders Readiness for Inclusive Education." International Journal of Inclusive Education, vol. 19, no. 8, 2015, pp. 863-874. DOI: 10.1080/13603116.2015.1013999.
• Sharma, Umesh, Dennis Moore, and Sanjeev Sonawane. "Attitudes and Concerns of Pre-service Teachers Regarding Inclusion of Students with Disabilities into Regular Schools in Pune, India." Asia-Pacific Journal of Teacher Education, vol. 37, no. 3, 2009, pp. 319–331. DOI: 10.1080/13598660903050328.
• Sharma, Umesh, and J. Deppeler. "Integrated Education in India: Challenges and Prospects." Disability Studies Quarterly, vol. 25, no. 1, 2005. DOI: 10.18061/dsq.v25i1.524.
• Smith, B. The Truth That Never Hurts: Writings on Race, Gender, and Freedom. Rutgers University Press, 1998.
• Taneja-Johansson, Shruti, Nidhi Singal, and Meera Samson. "Education of Children with Disabilities in Rural Indian Government Schools: A Long Road to Inclusion." International Journal of Disability, Development and Education, vol. 70, no. 5, 2023, pp. 735-750. DOI: 10.1080/1034912X.2021.1917525.
• UNICEF. "Inclusive Education Webinar Booklet." United Nations International Children's Emergency Fund, 2013, https://www.unicef.org/eca/sites/unicef.org.eca/files/IE_Webinar_Booklet_13.pdf.

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Radical Vulnerability: An effective tool for narrative construction
Abhishek Anicca (he/him)
Independent Scholar
byjha@gmail.com 

Abhishek Anicca, is a writer, poet, scholar and arts practitioner. An independent scholar, Abhishek completed his MPhil in Women's and Gender Studies from Ambedkar University, Delhi. His first book, The Grammar of My Body, a collection of memoir essays of living with disability and illness has been published by Penguin Random House India (2023)

To reference this paper: Annica, A. (2024). Radical Vulnerability: An effective tool for narrative construction. In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

If I talk about everything, all my bodily processes as part of my disabled experience, will that make me less of a human?

As a disabled and chronically ill writer, this question forms the centre of my narrative writing process. How much to put out? How much is necessary? Whether it's okay to leave out some parts if the process of revisiting also leads to trauma?

This form of ‘truth telling’ poses many challenges when talking about embodied experiences. Not only our experiences are shaped by society but they in turn reshape how society perceives us. Whatever we are putting out shapes how others treat us and the outcomes are not always positive or what we intended it to be.

For years, critical disability studies and health humanities have relied on narratives of persons with disabilities to foster an understanding of what it feels to live with a disability and how the society is shaped around it. Today narratives themselves have become a tool of healing through narrative therapy. But how much truth and power do these narratives truly carry? Do narratives shape a research or does research shape the kind of narratives it produces?

These are important questions, especially when there is disparity of agency between whose story is being told and who is telling the story. One of the ways this is resolved is by removing the subjectivity of the interviewer and letting disabled people tell their stories without any mediation from the researcher. But is that truly possible when most aspects of research itself are mediated by academic norms and what good research is?

One would assume that these problems resolve themselves when a disabled person is also the researcher and in charge of their narrative, using autoethnography or storytelling as the core fulcrum of their research. But one wonders even in these cases if the work is truly free from the pressures of what good research is and what fits in the normative idea of research. One also wonders about the filtering of these narratives, as they shape not only society's perceptions of disabled and / or ill  individuals but also perceptions of the self.

Truth telling itself is a tricky thing, especially when truth is experiential and subjective. A disabled / ill person's truth of everyday life of a disability is sometimes very different from the truth of even their primary caregivers. How then, can narratives embody truth in a way that they are not trying to conform into norms of research or societal expectations.

Not all truths are equal when it comes to a narrative. Some carry more weight than others. In fact, broader truths often lose their importance after a while. I am disabled by this society. A true statement which originates from the social model of disability while impactful to make an overarching statement, gives enough room for able bodied members to remain indifferent to this reality by refusing to fit into the definition of society. On the other side of the coin, small everyday truths that are factly yet vulnerable often force some kind of contemplation and even action. I fell today. I couldn’t go to the restaurant because it was inaccessible. I was bullied by some kids outside my house. Even if you see these statements as mere individual experience, they have a greater impact on how they shape perception around disability and help start conversations on disability.

During the course of writing my memoir essays, which was published as The Grammar of My Body (Penguin Random House India, 2023), I focused on these small truths of everyday life. I wear a diaper. I have UTI. I have incontinence. I shit in my pants. I kept falling and crawling. I am afraid I can't perform a traditional sexual role at times. Am I man enough? These small everyday facts of my life help me build the larger picture of stigma and social alienation that being a disabled and chronically ill person leads to. They not only become an effective tool of communication and advocacy but also work as a form of narrative therapy that helps me to heal.

Why is this kind of radical vulnerability important to critical disability studies, health humanities and academia in general? Firstly, it is one way to free narratives about disability from structural chains of research, be it theoretical frameworks or methodological tools. Secondly, it elevates a narrative to a communication and advocacy tool, impacting readers by introducing day to day facets of disability which often get ignored. Thirdly, it highlights the ‘ugly’ aspects of disabled life, things that are not talked about and often cause discomfort but are essential to expand the disability discourse.

Radical vulnerability does not apply only to autoethnography or autobiographies. Even in ethnographic research vulnerability helps to break the power equation between the interviewer and interview, where despite different subjective positions in life, they can both open up and let each other into their lives. To share everyday aspects of lived reality, frees the narratives from presenting stories of overcoming, achievement and success which turn them into some form of inspiration porn, reducing disabled lives into an arc fit for consumption for the able bodied society.

There are limits to using radical vulnerability. Too much of it can result in performative victimhood, especially in a situation where disabled people across disabilities are involved. Moreover, reliving your lived reality through narrative, at least some aspects of it can be very traumatic and might do harm to mental and emotional wellbeing of disabled individuals. Radical vulnerability can be an important radical tool if used to give more depth and reveal hidden aspects of disabled lives within the structure of narrative storytelling. It also creates a template for effective research communication and disability related advocacy. It can include diverse bodily experiences and yet construct an argument against the stigma and discrimination that alienates disabled individuals.

Some publications by the author

Books
The Grammar of My Body, Vintage, Penguin Random House India (December, 2023)

Academic Articles
Anicca, A (2021). The Beauty of Patterns: A review of Five Poems by Tito Rajarshi Mukhopadhyay”, Indian Journal of Critical Disability Studies. Delhi, India, 1(1), pp. 94 - 103. Available at:

https://jcdsi.org/index.php/injcds/article/view/40

Anicca, A. (2021). Play pricking. Research and Humanities in Medical Education, 8, 127. Retrieved from https://www.rhime.in/ojs/index.php/rhime/article/view/526

Anicca, A. (2022). The year of dying and living. Research and Humanities in Medical Education, 9, 1–3. Retrieved from https://www.rhime.in/ojs/index.php/rhime/article/view/528

Anicca, A. (2020). Paranoia. Research and Humanities in Medical Education, 7, 41–42. Retrieved from https://www.rhime.in/ojs/index.php/rhime/article/view/307

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Disability in Healthcare: Mediating the Self in Illness Narratives
Sandeep Singh (he/him)
Ambedkar University
sandeeprsingh@aud.ac.in

Sandeep R. Singh is an Assistant Professor of Comparative Literature at Ambedkar University Delhi, India. He teaches courses on Disability Studies, World Literature, Literary Comparison, Narratology and Life-Writing at the Undergraduate and Postgraduate level. He is a co-applicant on the Disability Matters Project funded by Wellcome Trust, United Kingdom. His research interests lie in the areas of Critical Disability Studies,  Life-writing, and Narrative Discourse.

To reference this paper: Singh, S. (2024). Disability in Healthcare: Mediating the Self in Illness Narratives. In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

To restore the human subject at the centre-the suffering, afflicted, fighting, human subject-we must deepen a case history to a narrative or tale; only then do we have a 'who' as well as a 'what', a real person, a patient, in relation to disease-in relation to the physical.     

Oliver W. Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales, viii

This paper aims to engage with an experiential perspective in understanding disability discourse from the notions of ability, normalcy, capacity and subjectivity. Simultaneously, attempting to trace disability as an epistemology. The paper will also focus on the presence of disability inclusive health research environments, and on thinking about how to cultivate a new generation of disabled and disability-positive health researchers.

My interest in life narratives of illness and disability began to take shape when I was a student in the Masters Programme at the Centre for English Studies, Jawaharlal Nehru University, New Delhi. I was fortunate enough to meet and be taught by the late Dr. Navneet Sethi who was a fellow disabled person and mentor, invaluable teacher and a beloved friend. She was also my Ph.D. supervisor in the formative years of my thinking through the ideas of disease, illness stories and the life narratives of the disabled. A lot of the ideas I thought through were predominantly an outcome of enriching conversations that I had with her about disability discourse, human predicaments, and narrative as therapy in general, and also about her illness and disability in particular. Her experiential narratives were about her lived realities of the everyday. She was a person with ailing lungs and a failing spinal cord, and required constant care, attention and a life support system for survival.

I came to understand how teaching and learning from her students, as she explained it, gave her joy and satisfaction amidst her struggles to stay afloat in her disabled body. There was one instance I recall very vividly; she was late for a class and promptly apologised the moment she arrived. We were quick to point out that she was only occasionally late whereas students came in late all the time. If she could help it, she told us, she wouldn’t be late at all⸺it was her body that planned her day, not her mind. It was her body that decided how far she could go, and for how long.

As for her classroom space, she loved it immensely. She talked about it as a place where she could flourish, foster deep personal and social relations, study emotions, and through the creative lens make the textual contextual, allowing personal narratives to be the source of wisdom about life. From her students, she would say, she drew the strength to go on with life, as her struggle for survival continued.  She also taught me to think about disability from the vantage point of epistemology, and how Disability Studies exists at the uneven boundaries of the social, foregrounded in resistance and celebratory in its insistence that disability is neither tragedy nor inspiration but a satisfying and enjoyable way of “being in the world”. This led me to think about disability as an epistemological resource to reflect on fundamental concerns within society such as the meaning of family and community, the role of the state and the very meaning of what it means to be human.

This opened up new vistas of learning in the classroom for me, and as a fellow disabled person, she would talk to me about how her illness and disability informed her academics as well as her politics. The embodied experience of disability, and the bearing it had in her classroom discussions and the courses she taught provided me with a broader understanding of disability, its lived realities, and the life narratives  about varied forms of writings.

As Arthur W.  Frank observes in The Wounded Storyteller: Body, Illness, and Ethics, “Ill… People tell stories not just to work out their own changing identities, but also to guide others who will follow them. They seek not to provide a map that can guide others—each must create his own—but rather to witness the experience of reconstructing one's own map….Storytelling is for an other just as much as it is for oneself" (17). The abovementioned observation by Frank, while acknowledging the self-exploratory nature of this kind of writing and further recognising that these narratives guide others on the same trajectory, also interestingly situates illness narratives as universal in scope, indicating that they invariably appeal to everyone.

Furthermore, this form of storytelling by the ill and the disabled carries within it the potential to rewrite the relationship between the margin and the centre. The embodied nature of our existence and the anxieties of illness, disease, disability and the vulnerabilities thereof mark the contours of our preoccupation with bodily perfection. It is this idea of bodily perfection that foregrounds the concepts of illness, disease and disability, and paves the way for the body to mediate its identity. One way to conceptualise this mediation is to understand that the identity thus arrived at is “embodied” i.e. determined by our being in the world while negotiating the realities of limitations that arise due to labelling and classification of the ill and the disabled. This results in contingencies of stigma, trauma, discrimination, struggle for survival and constant disruption of life, perpetuated by social disablement that occurs through the normative order and ableist rhetoric. To counter this tyranny of a dominant, hegemonic discourse, the ill and the disabled (through their embodied identity and the experiences of  everyday realities) make a claim for personal experience to be used as a reference for self-expression.

In my own life, having undergone eye surgeries as a blind person, I have only ever been a passive recipient of healthcare. I never knew what procedures were performed on me, what spaces I was taken to or who the doctors or nurses were. As their hands ran over me in the process of the surgery, I couldn't run my hands over them in return; to gather information about who they were and what they were doing. As a young child this was a particularly traumatic experience that led to a fear of hospitals and suspicion about medical care. These experiences were instrumental in cementing my conviction that healthcare experiences need to be more inclusive.

Health research often ignores the specificities of disabled people’s lives and the health inequalities that they endure as a consequence of disabling systemic factors. I am of the opinion that, critical disability scholarship must create a level playing field so that we can proactively thrive rather than passively live with our disabilities.

As a disabled early career researcher, I strongly believe that disabled people shouldn't merely be  considered consumers of health. They should play a pivotal role in guiding health research and practice. We must position people with lived experience of disability as experts and advocates in the formulation of health priorities.

References

Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1997. Print.

Sacks, Oliver W. The Man Who Mistook His Wife for a Hat and Other Clinical Tales (1970). New York: Touchstone, 1998. Print.