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Introduction by Dan Goodley

Welcome to the 2024 Online Symposium of Disability Matters: a major six year pan-national programme of disability, health and science research, funded by a Wellcome Trust Discretionary Award.  

I’m Dan Goodley - the Principle Investigator - and I work in the iHuman research institute at the University of 91ֱ��. I’m a white, early 50s, cisgendered bald man wearing fabulous clothes, many of them sewn by my own fair hands. My preferred pronouns are he/him. I am a member of the TAB community. 

A key ambition of Disability Matters is to make disability the driving subject of research. One element of our programme promotes scholarship that demonstrates the contribution of disability studies to a host of fields and disciplines. Over the course of the project we are going to run a number of short and accessible online symposia. We are delighted to be joined by three brilliant speakers today and would like to thank them for their work for this event.

Before I hand to Christina I would like to say a few words about the brilliant, groundbreaking and critically acclaimed disability studies scholars Professor Anita Ghai. We learnt today of Anita’s passing. This is shocking news. Anita was a dear friend and original driving Co-Investigator of Disability Matters. We will, in time, ensure that the Disability Matters Programme truly celebrates her immeasurable impact on disability studies in India and across the world: but for now let us remind ourselves of and give thanks to this true powerhouse of disability studies. Today’s symposium sits with and acknowledges one of Anita’s greatest achievements: decentering disability studies. Sandeep we send love and respect to you and all Indian disability studies researchers and activists who will be mourning the loss of Professor Anita Ghai.

Rest in Power Dear Anita.
 

Introduction by Christina Lee 

My name is Christina Lee. I am a Research Associate for Knowledge Exchange for Disability Matters. My preferred pronouns are she/her and I am a southeast Asian woman with medium-length black hair in her 30s. I will be supporting Dan in facilitating this event. We are also being supported by Rhea Halsey, our Programme Manager, who is moderating today. 

The theme of this year’s event is ‘disability in the geopolitical south’. Conversations about disability are often dominated by scholars in the geopolitical north and the experiences of disabled people in the geopolitical south are often marginalised or ignored. So for this event, we wanted to disrupt this practice by inviting our speakers to respond to the question:

How does your area of research engage with disability in the geopolitical south and challenge dominant epistemologies and paradigms of disability?

The format of the symposium will be as follows:

• Three presentations (10 minutes x 3) - Christina will introduce each before their presentation and presenters will give an audio-description and preferred pronouns
• Q&A (20 minutes)
• Open plenary and discussion (20 minutes) 

Duration: 1hr 15m 

For access reasons, we are committed to sticking to time.
 

Housekeeping and Access 

• The papers being presented today are available on our website so you can follow as our speakers present. You can find this link in the chat. 
• Having cameras on is completely optional. (But please bear in mind that this session will be recorded if you do wish to keep your camera on.)
• If you wish to access English live captioning, you can turn this on by clicking the Live Caption option in the meeting toolbar below. 
• British Sign Language interpretation is being provided throughout by our interpreter, Bharti. If you require BSL interpretation, please pin the interpreter to your screen by clicking on the three dots on the top right corner of the interpreter’s video and select ‘pin’. This will ensure that the interpreter is visible on your screen at all times. If you experience any issues with this, please let us know in the chat.
• The symposium will be recorded and made available on the Disability Matters website. 
• Please direct questions to the Q&A box in the toolbar at the bottom of the screen. These will then be read out loud later on. 
• Do make yourself comfortable in this event and if you feel you need to leave the call at any point for any reason, please feel free to do so.

You can share your thoughts with us after the event by posting on Twitter/X using the hashtag #DisMatters2024 and tagging us on @DisMatters. Or you can also email us with comments at Disabilitymatters@sheffield.ac,uk.

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Presentation 1: Jiya Pandya 
 

Biography: Jiya Pandya is a scholar of transnational disability studies currently working on a concept history of "disability" in postcolonial Indian welfare as a PhD candidate at Princeton University. Their work has been published in Disability Studies Quarterly, Lateral, History of Anthropology Review, and QED: A Journal in GLBTQ Worldmaking.

How does your area of research engage with disability in the geopolitical south and challenge dominant epistemologies and paradigms of disability?

Calls to “decolonize” disability studies have proliferated in the last decade. Pointing to the scholarly overrepresentation of Europe and North America, academics and activists have pushed for research into new places and ways of thinking. But what does it mean to “decolonize” histories and approaches that are forged through the workings of empire? Arguing that the discourse around “decolonization” in the Global South – specifically, India – is currently analytically and politically insufficient, my work reshapes disability studies by calling for engagement with historical specificity, attention to the hybridity of concepts in the encounter between West and non-West, and an awareness of the ways decoloniality is being coopted in global politics. I do this by using multilingual archival and ethnographic research to historicize the fundamental concept of “disability” itself and to look for “accessibility” and “disability justice” where they go by other names.

My dissertation/first book, Broken Bodies, Handicapped Nation: Conceptualizing Disability, Welfare, and the Indian Nation-State, 1930-1995, shows how “disability” was produced as a contingent and flexible concept in the mid-twentieth century. During this period of decolonization, newly independent nations like India worked with transnational aid organizations for the welfare of those they defined as “disabled.” Both Indian and transnational actors leveraged this “disability welfare” work to garner moral authority for varied political projects. Chapters feature (i) the use of leprosy work to gain support for missionary conversion and a nationalist mass movement, (ii) mandatory physical education and yoga as methods to build an able-bodied, healthy, independent nation, (iii) the expansive development of rehabilitation and vocational therapy for the disabled as a means to promote “indigenous” Indian technologies and industries, and (iv) the declaration of 1981 as the United Nations International Year of Disabled Persons to build goodwill for Western developmental aid and socio-economic liberalism. In addition to unpacking the top-down approach of developmental and humanitarian politics, I also examine how Indians with “non-normative” bodies – especially those categorized in Indian law as “socially handicapped” due to disadvantages of gender, class, and caste – navigated the flexible construction of “disability” to push for piecemeal inclusion in welfare projects. While these moral projects resulted in the incorporation of certain forms of disability and certain disabled people into transnational politics, they excluded many others from accessing disability identity and rights. Particularly now, at a time when India’s right-wing government is advertising its commitment to “disability welfare” and “decolonization” to back their dangerous and exclusionary policies, it is vital to push for a textured history of these concepts and the structures of power in which they are embroiled.

A key argument I make in this book is that the foundational concept of the “social model of disability,” which has shaped so much of our field and our activism, was actually inherently transnational, intellectually relying on concepts from the “periphery” to shape the Western trajectory of disability studies. Vic Finkelstein of the Union of Physically Impaired Against Segregation or UPIAS, the group credited with coming up with the “social model of disability,” in fact borrowed language for their model from the Indian legal emphasis on “social handicap” and from South African anti-apartheid work. I can speak more to this later, but I want to reiterate that there is no disability studies without the complex entanglements of the Global North and South, and the categories scholars take as foundational were, in fact, shaped during and after empire.

I have also brought the lens of disability justice to service work in the field and to advocacy work in South Asia. For the former, I am editing a special issue with two colleagues inaugurating the concept of “peripheral crip critique” which features scholarship exclusively about the Global South in the journal Disability Studies Quarterly. We are accepting academic articles, artistic pieces, and other forms of submissions on ways we can rethink crip theory and critique from the Global South by Feb 15th, and I encourage anyone here interested in applying at . I have also been recently with the International Campaign for Justice in Bhopal (ICJB), run by survivor groups from the aftermath of the catastrophic 1984 Bhopal Gas Leak. This year marks the 40th anniversary of the gas leak, and events have taken place around the United States and India to register the demands of survivors against Dow Chemicals, the company who owned the pesticide factory which leaked toxic MIC gas on the people of Bhopal, a small city in Madhya Pradesh, in India, and against the Indian government for their mismanagement of the legal case of survivors. If anyone here is interested in getting involved in that work, please write to me and we’d be thrilled to include you in future events and organizing.

My second book project builds on my political advocacy with ICJB by focusing on how Bhopali survivor activism speaks to “disability justice” without using that terminology. It provides a counter-genealogy of disability activism by focusing on alternative vocabularies of health, care, cure, and pain in social movements across the Global South. It takes as its starting point the understanding that disability identity and academic inquiry are fundamentally inaccessible to many by virtue of their class, caste, and geographical location. To meaningfully account for this exclusion, this project turns to movements that have not been considered part of struggles for “disability rights” or “disability justice” but work closely on questions of access, cure, care, and health. I put the theories emerging from the movement in Bhopal in conversation with those from environmental justice groups in Sub-Saharan Africa, Latin America, and East Asia, taking my cue from the survivor tour that Bhopalis did in the United States earlier this year building connections with frontline communities in Louisiana, Delaware, Pennsylvania, and Ohio, to name a few. In my second project, I establish that an inclusive, intersectional, and “decolonial” disability framework is already being materially developed outside the ivory tower. Through the two books, special issue, and other service and advocacy in disability community, I hope to continue building an inclusive, rigorous, transnational, and politically engaged disability studies.

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Presentation 2: Vishnu KK Nair
 

Biography: Vishnu KK Nair, PhD is trained as a speech and language therapist and a critical scholar of communication disability. Currently, he is a lecturer in the school of psychology and clinical language sciences at University of Reading. His research focuses on understanding communication disability utilising critical, decolonial and global southern epistemologies.

Locating Neurodiversity: Beyond (White) Liberal Global Northern Conceptualisations

In this paper, I focus on Global South and Neurodiversity and how these two intersections demonstrate opposing polarities of epistemological marginalisation and epistemological domination. I utilise this binary not in a reductive sense, but to highlight the invisibilisation of multi-conceptualisations beyond the ones originating from the North relating to Neurodiversity. Neurodiversity, as a theory and a movement had enormous impact in challenging the domination of brain, cognitive and medical based understanding of disabilities such as Autism or ADHD. Chapman (2023) laid out a Marxist perspective of Neurodiversity that clearly rejects the biological determinism underlying the construction of typical and atypical based on Galtonian ideologies. Whilst this theoretical evolution is commendable, the most popular version of neurodiversity utilised in Global North, particularly in countries such as the UK and the US are rooted within a liberal paradigm. This version of  neurodiversity has been depoliticised and commodified from its original onto-epistemological commitments towards emancipation and social justice.

A reconceptualised neurodiversity implemented across multiple liberal institutions such as university, organisations, charities, NGOs or academic publishing have erased the intersectional experience of racialised other living in the Global North (e.g., Onaiwu, 2020). This erasure is significant because, within these discourses, neurodiversity becomes a commodity for knowledge production or used within liberal institutions for upholding performative diversity measures. Such an erasure will also result in othering of individuals i.e., the White majority can be labelled as neurodivergent whereas the racialised other becomes “naughty”, “problematic” or “erratic” etc. This raises a set of questions, for example, who gets to have access requirement met for being neurodivergent in an educational setting? Who are the ones that are not imagined within this label or classification? It is not so much that the label itself is the site of contention but these questions are directly related to who is creating a particular construction in a given location. In my current research, I address this issue through pointing out the erasure of racialised other within a neurodiversity paradigm and think beyond the White, middle class, liberal discourses of neurodiversity. Importantly, I examine the intersectional impact of such erasure in a racialised neurodivergent child.

Whilst these issues offer a critique of liberal neurodiversity lens, I further unsettle the most radical forms of neurodiversity that challenges capitalism and aims to achieve a neurodivergent liberation. I argue that new scholarship emerging in this area is not fully engaging with other related fields of critical disability studies (e.g., Annamma et al. 2013; Goodley, 2012). In a recent paper, along with colleagues from the UK and the US, I pointed out that it is imperative for neurodiversity to engage with a number of different critical fields, particularly disability critical race theory to create an expansive understanding of neurodivergent oppression (Nair et al. 2024). This is particularly important in the context of increased incarnation rates of racialised other in the US or the UK. Critically, I highlighted the overrepresentation of whiteness in neurodiversity scholarship which is symptomatic of epistemological domination, a sign of totalising tendencies of colonial science that invisibles othered experiences. This epistemological domination is also predicated upon undermining Global Southern epistemologies that have parallels with neurodiversity, however, have a deeper understanding of disability. Whilst I do not aim to delineate a list of diverse southern epistemologies, I highlight that sensemaking of divergence existed in all cultures and there is a common thread of ethical and moral responsibilities, centering of distributional and relational practice towards neurodivergent individuals that is shared between diverse southern knowledge systems (Canagarajah, 2023). Wide range of situated knowledge practices have predated the Global Northern conceptualisation of Neurodiversity, yet the latter has often been projected as a singular theory or a movement originated in the 1990’s from the Global North capable of emancipation. This totalising tendency is problematic not just because of its epistemological erasure, but in doing so, it invisibilises the neurodivergent individuals living in Southern locations.

The invisibilisation also results in exporting of a liberal neurodiversity framework to Global South under the assumption of a “theoretical lack” in those geographies. This raises a new set of tensions that an adapted and borrowed Northern liberal framework is not equipped to engage with, for example in the context of India where there are intersectional inequities due to rise in Hindu nationalism and Islamophobia, institutionalised brahmanical patriarchy and the convergence of caste and capitalism. Although the neurodiversity framework of the North may make minor liberal advancements, it may not have any emancipatory potential in these societies given the complex realities. I, therefore, call upon neurodiversity scholars to engage in this critical reflection and learn from other situated knowledges and practices of bodymind divergence and the intersectional impact of such differences in geographies beyond Global North.

References
Annamma, S. A., Connor, D., & Ferri, B. (2013). Dis/ability critical race studies
(DisCrit): Theorizing at the intersections of race and dis/ability. Race ethnic-ity and education, 16(1), 1-31.

Canagarajah, S. (2023). A decolonial crip linguistics. Applied Linguistics, 44(1), 1-21.


Chapman R. (2023). Empire of normality: Neurodiversity and capitalism. Pluto
Press.

Goodley, D (2012). “Dis/entangling Critical Disability Studies.” Disability & Society
27 (6): 631–44.

Giwa Onaiwu, M. (2020). I, too, sing neurodiversity. Ought: The Journal of Autistic
Culture, 2(1), 10. Doi: 10.9707/2833-1508.1048

Nair, V. K., Farah, W., & Boveda, M. (2024). Is neurodiversity a Global Northern
White paradigm?. Autism,
 

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Presentation 3: Ankita Mishra 
 

Biography: Ankita Mishra, PhD, is the Research Associate: Health Priorities for Disability Matters at 91ֱ��. Her research, teaching and scholar activism is interdisciplinary using participatory and creative approaches in her work with marginalised communities affected by intersectional oppression. She draws upon critical community psychology, Black feminism, critical race theory, critical disability studies and decolonial theory in her research and practice.

How does your area of research engage with disability in the geopolitical south and challenge dominant epistemologies and paradigms of disability?

I would like to start by saying that my understanding and use of north/south in this context is geopolitical, socioeconomic rather than geographical. I also acknowledge the limitations of these terms risk homogenisation of countries and regions, when that is not really the case.

Marginality is much more than a site of deprivation; it is also the site of radical openness and possibility, a space of resistance.
- bell hooks

In her essay Choosing the Margin as a Space of Radical Openness, bell hooks (1989) conceptualises the margin as a ‘profound edge’ that helps develop a particular understanding of the centre as well as the periphery, providing a sense of both the outside in and the inside out, fostering possibilities of radical perspectives and ways of knowing unknown to those not on the margins. In disability studies scholarship, despite ongoing discourses on decolonisation and de-ableism, Euro-American, Western, whitestream knowledge, practices, and institutions continue to exercise control over what counts as knowledge, how it is produced and by whom, through legitimising specific ways of knowing (Castro-Gómez, 2002; Mbembe, 2016), marginalising geopolitical South knowledge(s) and praxis. This hegemonic universalisation of the geopolitical North paradigms, epistemologies, theories, and methodologies asserts and maintains the ‘coloniality of power’ in the global context of research and knowledge production.

In line with hooks (1989), I distinguish between this type of marginality that is imposed by oppressive structures and the marginality that is chosen as a site of resistance. I contend that disability studies scholarship needs to engage with the marginality of the geopolitical South knowledge(s), ways of knowing, and understanding as a radical point of resistance to challenge the monoculture of Eurocentric disability studies and rational-cognitive ways of scientific knowledge. Here, the margin becomes the centre; the starting point from which to reimagine alternative worlds and possibilities in and of disability.

For disability studies scholarship, immersing in this radical space can be simultaneously:

• Disruptive, as it can unsettle hegemonic structures of knowledge or taken-for-granted ways of knowing and being embedded within Western whitestream disability studies (Santos, 2018);
• Generative, as it enables considering alternative ways of knowing through written, verbal, visual, affective, embodied, experiential, mental, intuitive, artistic, spiritual, and multiplicity of oppositional knowledge(s) to domination (Collins, 2002);
• Collective, as it seeks working with, from, and across the knowledge(s), experiences, and wisdom of disabled people in the geopolitical South (Nguyen, 2023);
• Recuperative, as it focuses on ethical principles that acknowledge relational accountability, care, communality of knowledge, interdependence, and benefit sharing (Chilisa, 2012; Wilson and Wilson, 2013).

As we reorient the periphery by engaging with the marginality of disability in the geopolitical South as a site of resistance, I propose that the conventional binary framing of ‘the global/geopolitical North as the “giver” and the global/geopolitical South as the “receiver”’ (Chataika, 2012: 262) can be disrupted. This further creates the possibility of expanding the scope for new relational epistemologies and paradigms of disability in the North to embrace traditionally excluded domains such as emotions, embodied practice, love, ancestral wisdom, spirituality, and the like (Castro-Gómez, 2002). This reciprocal engagement, as Spivak (2016) suggests, ‘confuses the distinctions’ between North and South, making the South visible in the North.

Connell (2019) describes this process as “cross-fertilisation” and “transculturalization” of knowledge(s) in transnational contexts. As such, our pan-national programme Disability Matters—with disability as the driving subject of inquiry—provides us with these possibilities. In my role exploring the health priorities of disabled people in Australia, Canada, India, Singapore, and the United Kingdom, I turn to centre India with the aim of reorienting the periphery and disrupting hegemonic paradigms of disability.

Owing to the tremendous diversity of the country, disability in India needs to be positioned within multiple contexts, or more precisely, in the ‘many Indias’ that exist. This multiplicity complicates attempts to apply universalised frameworks from the Global North, which often fail to account for the specific socio-historical conditions, the realities of colonisation, caste, poverty, religion, region, gender, sexuality, and the impact of the hybridised nature of culture, economics, and politics on the lived realities of disabled people (Ghai, 2006; Mehrotra, 2020). It is also crucial to interrogate the use of Eurocentric concepts in understanding disabled people’s health(care), dependency, healing, cure, and rehabilitation in the socio-political-cultural and religious-spiritual milieu of India, making their uncritical application both epistemologically and methodologically inappropriate.

Centring the diverse and multifaceted realities of the many "Indias" is immense and deeply layered, resulting in a multiplicity of meaning(s), knowledge(s), and understanding(s) of disability and disabled identities, something that is nearly inconceivable within most Global North contexts. Through the ‘many Indias’, it reminds us of the nuances, complexities, pluralities, and multivocalities of doing disability and being disabled, and how disability is understood and experienced in these contexts is historical, cultural, political, and social. This radical space of the margin denounces the binary understanding of nature and reason, body and mind, rejecting the ahistorical classification of bodies through the scientific canon of knowledge production independent of context (Connell, 2011). Moreover, the lens of ‘connected selves’ in the Indian context (Das and Addlakha, 2001) positions inclusiveness at the core of humanity and highlights the significance of family and community support, particularly in the absence of state support. Thus, engaging with connectedness challenges the myth of ‘western independence’ and autonomy and offers possibilities to reimagine care, kinship, and community through the existence and co-existence of disability.

Taken together, an engagement with disability as the driving force of legitimate knowledge, the multiplicity of narratives of disabled people in disability and health research scholarship in India, and valuing diverse ways of knowing suggests the necessity of participatory research. Participatory research is a collaborative form of inquiry that centres the commitment to ‘no research on us without us’, originally advocated for by South Africans and Maoris in New Zealand and later adapted as the primary value of the disability justice movement (Fine et al., 2021). The origins of participatory research and its development draw inspiration from several thinkers and practitioners in the geopolitical South and have been adopted worldwide. By thinking through geopolitical South disabled ways of being as valuable and viable, we aim to de-hegemonise accounts of ability and disability in transnational contexts. Practicing where I am from and not where I am at gives me the inherent power in refusal for taken-for-granted ways of knowing and being. Following Grech (2021: 138), I refuse the generalisation and simplification of disability and the geopolitical south(s); I refuse the notion of vulnerability and fading agency attributed to disability and the geopolitical South; I refuse the imperative for intervening or exporting from the west to the other(s). Our endeavour in Disability Matters insists that the margin is not merely a site of deprivation but a transformative space of possibility. If disability studies fails to embrace these generative margins, it risks replicating the very systems of exclusion it seeks to dismantle.

References
Castro-Gómez, S., (2002) ‘The social sciences, epistemic violence, and the problem of the “invention of the other”’, Nepantla: Views from South, 3(2), pp. 269–285.

Chataika, T., (2012) ‘Disability, development and postcolonialism’, in Goodley, D., Hughes, B. and Davis, L. (eds.) Disability and social theory: New developments and directions. Basingstoke: Palgrave Macmillan, pp. 252–265.

Chilisa, B., (2012) Indigenous research methodologies. Thousand Oaks, CA: Sage.

Collins, P. H., (2002) Black feminist thought: Knowledge, consciousness, and the politics of empowerment. 2nd edn. New York: Routledge.

Connell, R., (2011) ‘Southern bodies and disability: Re-thinking concepts’, Third World Quarterly, 32(8), pp. 1369–1381.

Connell, R., (2019) The good university: What universities actually do and why it’s time for radical change. London: Zed Books.

Das, V. and Addlakha, R., (2001) ‘Disability and domestic citizenship: Voice, gender, and the making of the subject’, Public Culture, 13(3), pp. 511–531.

Fine, M., Torre, M. E., Oswald, A. G. and Avory, S., (2021) ‘Critical participatory action research: Methods and praxis for intersectional knowledge production’, Journal of Counseling Psychology, 68(3), pp. 344–358.

Ghai, A., (2006) (Dis)embodied form: Issues of disabled women. Delhi: Shakti Books.

hooks, b., (1989) ‘Choosing the margin as a space of radical openness’, Framework: The Journal of Cinema and Media, 36, pp. 15–23.

Mbembe, A. J., (2016) ‘Decolonizing the university: New directions’, Arts and Humanities in Higher Education, 15(1), pp. 29–45.

Mehrotra, N., (2020) Disability studies in India: Interdisciplinary perspectives. Singapore: Springer.

Nguyen, X. T., (2023) ‘Towards a decolonial approach to disability as knowledge and praxis: Unsettling the “colonial” and re-imagining research as spaces of struggles’, in Arvin, M., Murakami, W. and Figueroa, M. (eds.) Intersectional colonialities: Ethnic and indigenous studies in the new millennium. London: Routledge, pp. 233–251.

Santos, B. de S., (2018) The end of the cognitive empire: The coming of age of the epistemologies of the South. Durham, NC: Duke University Press.

Spivak, G., (2016) ‘Interview for the seminar “The veils of violence: Reflections and ethnic and gender experiences in Chile and Latin America”’, Cátedra Indígena, UChile Indígena, the Interdisciplinary Center for Gender Studies of the Faculty of Social Sciences. Available at: (Accessed: November 07 2024).

Wilson, S. and Wilson, A., (2013) ‘Neo way in ik issi: A family practice of Indigenist research informed by land’, in Mertens, D., Cram, F. and Chilisa, B. (eds.) Indigenous pathways into social research: Voices of a new generation. Walnut Creek, CA: Left Coast Press, pp. 333–352.

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Q&A Session and Close

Thank you to our speakers, we will now open up to the audience for questions. 

If you attended our event, please feel free to leave your feedback via our survey (5 questions): 

Thanks again from the Disability Matters team.