The 2024 iHuman Annual Critical Disability Studies Lecture
A keynote paper by Professor Anita Ghai
2.30 - 4pm, Delhi time (9.00 – 10.30 am, GMT)
The 2024 iHuman Annual Critical Disability Studies Lecture
Film recording
This lecture was delivered by Professor Anita Ghai, livestreamed and held face-to-face from the Karampura Campus, Dr. B.R. Ambedkar University, Delhi.
Introduction by Dan Goodley
Welcome to the 2024 iHuman Annual CDS lecture.
This year, iHuman, University of Sheffield is delighted to co-host this event with Ambedkar University. My name is Professor Dan Goodley, co-director of iHuman, University of Sheffield and the PI on a Welcome Trust six year programme of research of which Ambedkar University along with Sandeep Singh who is a key collaborator. It is my pleasure to be able to introduce this Annual Lecture. These yearly events are organised to showcase some of the most important, disruptive and influential voices in critical disability studies. Those invited are disabled people themselves and their work will have had a significant impact upon the interdisciplinary community we call critical disability studies.
Today I can state with confidence that we will be listening to a true critical disability studies leader, inspirational writer and influential social theorist: Professor Dr Anita Ghai.
When one thinks of Indian critical disability studies it is impossible not to think of Professor Dr Anita Ghai. Professor Ghai’s work has quite simply been revolutionary in her beloved India and across the global critical disability studies community. Anita’s career and scholarship can defined in a number of distinct ways. One methodology for capturing this unique voice - which continues to influence old and young critical disability studies scholars today - is to consider how Anita’s work has moved and influenced scholars and activists. In my brief introduction I would like identify what I am playfully calling five Ghaisms. I hope Anita you will forgive me for this: but what I have tried to do is to tease out five key arguments, provocations, leitmotifs no less - emblematic of your work - as way of introducing your lecture today but also as a means of saying thank you.
Thank you Anita for the intellectual, political and personal effort that you have put into shaping the field of critical disability studies.
So, five Ghaisms.
Ghaism 1: Disability can only ever be understood in relation to place, culture and history. A point we should remind those folk, especially white folk in the global north, who love to find a ‘universal model’ of disability.
Ghaism 2: Disability is as much a psychical matter as it is a political one. Do not be afraid to consider the psychological, the psychical, the emotional, the affective - just ensure its wrapped in criticality and a socio-cultural persuasion.
Ghaism 3: Disability theorisation can only ever be done in unison with disability politics and disability culture. It is impossible to divorce these communities from one another; no matter how much academia might like to do.
Ghaism 4: Disability is a fundamentally intersectional entity. Anita you’ve always known this, draw attention to this and pushed us all to not fall for simplistic one-dimensional understandings of disability.
Ghaism 5: The disability experience is truly a complex material and immaterial one.
You have always been as interested in materiality as you immateriality and your writing has never sought to separate them. Anita, thank you for all you have done and continue to do for the field of critical disability studies. It is truly an honour for me to able to introduce you today.
References
Ghai, A. (2002). Disabled women: An excluded agenda for Indian feminism. Hypatia: A Journal of Feminist Philosophy, 17 (3), 49–66.
Ghai, A. (2006). (Dis)embodied Form: Issues of Disabled Women. Delhi: Shakti Books.
Ghai, A. (2014). Rethinking Disability in India. Delhi: Routledge.
Professor Anita Ghai
The 2024 iHuman Annual Critical Disability Studies Lecture
Critical disability studies and engaged practice: A potential and some concerns
To reference this paper - Ghai, A. (2024). Disability studies and engaged practice: A potential and some concerns: The 2024 iHuman Annual Critical Disability Studies Lecture 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.
Disability Studies (DS) and now Critical Disability Studies (CDS) has been a major preoccupation of the last three decades of my life. I will make an attempt here to present what I see as an urgent inclusion in the field of social sciences and humanities. Just a few words about myself. My academic training has been in Psychology but unsurprisingly given my personal predicaments and existential reality, even my doctoral research was in a field that I then called Mentally Handicapped [sic]. In 2015, I got the opportunity to join the School of Human Studies, Ambedkar University in which three of my closest affiliations were coexistent namely Psychology, Gender and Disability. All three have a critical quality that engages with human predicament. The discourses take an affirmative position that can ‘urge us to think critically and creatively about who and what we are actually in the process of becoming. Critical disability studies view disability as both a lived reality in which the experiences of people with disabilities are central to interpreting their place in the world, and as a social and political definition based on societal power relations. Emerging from the activism of disabled people in the 1970s, this area of study involves both academics and activists representing multiple disciplines and perspectives which bring an interrogation of normalization, stigma, subjugated subjectivity, body, health, difference versus deficit and discourses of madness, mental health and gender.
Disability, like questions of race, gender, caste and class, is one of the most challenging topics among scholars who have an interest in marginality. As I have stated often, that the ‘comprehension and meaning of disability in India is embedded in multiple cultural discourses that are subtly nuanced’. ( Ghai[1], 2002 So how and why disability matters in India is significant. In the last few years, the question of disability has opened in many sites such as media, law, and gender. My predicament of a life lived as a woman with visible disability has brought me to rethink epistemology from the vantage point of disability.
Bridging the gap between theory and practice is significant, as my attempt has been to illuminate structures of power and learn how historical and cultural perceptions of the human body have been informed by and contribute to the oppression of people with disabilities. The genesis of CDS reflects not only the pain and anguish of disabled lives, but also the resistance to the oppression inherent in living with a label, which evokes and attaches a negative value to ‘lack’, 'deficit' as well as 'difference'. The normative culture both in India and the world over, carries existential and aesthetic anxieties about difference of any kind be it caste, class, gender or disability. This leads to a creation of a living reality of acute marginalization, discrimination and stigmatization Consequently my own research and practice has lead to evolve and legitimize “Critical disability studies” as a discipline. Before I underscore the potential of CDS, let me foreground some of the challenges that I believe have led to a development of CDS. As a disabled woman, my own location in the field is complicated because it raises perturbing yet important questions: What is my own disability? What is my stance as an activist? With what authority can I speak about disability and CDS? And why? Am I speaking with disabled people or about them? What language do I use to describe disability? Who has the power to name and label? How does understanding of CDS exclude others from speaking out? Is disability certification important? Are we in a position negotiating with issues of diagnosis?
The political theorist Michael Walzer[2] has concisely characterized "social criticism" as "the educated cousin of the common complaint" (Walzer, 1987, p. 65) to make his argument that effective social theory must never move too far from the very real problems faced by everyday people. So, CDS is an interdisciplinary study concerned with the representation of the concepts, cultures, and personal experiences of disability in all its variations. One way to do this is to mark out the differences from other fields e.g. the term " Critical disability studies” cannot be a substitute for special education or rehabilitation sciences. The term also cannot be compatible with research into community support and inclusive education, though research in these areas is in accord with these issues. The potential of disability is that study of disability be as broad as culture itself. For this the tools and traditions of all our ways of knowing about the world has to be comprehended. The subject matter of CDS transforms the understanding of disability from an individual deficit to a complex derivative of social, environmental, and biological forces. CDS perspective therefore enlightens how individuals designated ‘disabled’ are treated in a manner that diminishes their economic, interpersonal, psychological, cultural, political, and physical well-being relegating them to membership in a minority group. The interdisciplinary work in disability therefore would initiate and evolve new meanings about disability and examine issues of access, employment, education, sexuality, and representation.
Though there is a movement from the medical to the social, framed in cultural contexts, an understanding of disability as legitimate knowledge is still missing. People-oriented movements have highlighted oppressive structures and given to marginalized communities; however, these voices do not include the knowledge base of disability. Both academia as well as activists work on the assumption that there are far more serious issues such as that of survival that need attention – as if disabled people should wait their turn until the issues of poverty and employment are fully sorted out. it may be noted that such objections are never raised while dealing with gender or racism or casteism. It is important to realize that the study of disability should question not only issues of medical cure or rehabilitation but also conceptualize disability as a social category on par with, gender, class, caste, race and sexual orientation.
CDS has not been privileged within the academia. Perhaps the reason is that understanding of disability is intimately connected to the study of ignorance, invisibility and identity as academia has not evolved tools for understanding how and why various forms of knowing have ‘not come to be,’ or disappeared, or have been delayed or long neglected, for better or for worse, at various points in history’ Absence of disability from the mainstream academia creates and maintains a status quo where the ‘disabled’ is incorporated within the existing social patterns as a “problem”.. Disability thus remains as an out-and-out state, both politically and academically — it is the source of its own oppression. Metaphors for disability have affected ways of thinking about and inter-relating with disabled people who have had little say in the choice of metaphors that writers have used to describe disabled bodies. Ableism therefore describes detrimental attitudes, impaired cognitive functioning and discriminatory behaviors toward persons with a disability. Disability thus provokes fears and anxieties about ‘able body’ mortality, and very easily renders itself as the ‘Other’. This process of alterity needs to be understood to comprehend the experience of exclusion. As Jordanova [3]points out “The idea of Otherness is complicated, but certain themes are common: the treatment of the Other as more like an object, something to be managed and possessed, and as dangerous, wild and threatening”.( (1989: p. 110). At the same time, the other becomes an entity whose very separateness inspires curiosity, invites probing knowledge. Thus creation of a devalued 'Other' is a necessary precondition for the creation of the able-bodied rational subject who is the all-pervasive agency that sets the terms of the dialogue.
Such an understanding suggests that more is at stake than a problematizing discourse of specific categories. By not exploring this relationship, higher education at large has delimited inquiry and pursuit of knowledge of disability. Possibly the reason is that schools, colleges, universities (and over all community), remains a site where not only knowledge but also a middle- class orientation with its patriarchal, neo-liberal and normative values are produced and reproduced. An academic understanding of disability as a social, cultural, and political phenomenon, is central counter the notion of disability as an inherent, unchallengeable trait located in an individual. Such an approach rejects the view that disability is solely a medical problem or a personal tragedy. CDS thus places the responsibility for re-examining and repositioning the place of disability within society not on the individual, but on academia as well as society itself.
CDS may be many things to many people, but if its full potential is to be realized, then it must avoid being seen as simply a new bottle for old wine. The purpose of making CDS an academic discipline is to create a body of knowledge, which can provide challenges towards rethinking and reflecting upon aspects of our comprehension of disability and social marginalization. CDS exists at the uneven boundaries of the social, concurrently rebellious and celebratory in its insistence that disability is neither tragedy nor inspiration but a satisfying and enjoyable way of "being in the world” just like the unforeseen possibilities of a new day, reflecting on the field of CDS is also loaded with unknown. For instance knowledge of disability has to be “ engaged in the unlearning of one’s own privilege. Ghai[4], 2015, p. 311) .
So that, not only is one marginalized constituency in a position to listen to another, but also one learns to speak in such a way that CDS academia and the larger society can rewrite the relationship between the margin and the center.
There are no easy answers to these never-ending questions of identity and inter-connections. There is no easy way of drawing boundaries between who should be in and who should be out; no easy inventory of heterogeneity of innumerable disability communities Both as an academician and advocate I believe that CDS make these questions relevant to everyone, whether they identify as disabled or not at any given time. It seems to me that identity is not an idle insertion into political discourse; rather it has critical implications for how the discipline of CDS can expand and thrive within academia”. As an insider I find that the ideas are wide-ranging with the most radical re-imagining of possibilities. They produce few answers but rather embrace the practice of constantly troubling the questions. They make even the radical seem quite conservative. For instance take any theory—humanism, psychology Marxism, critical race theory, feminist theory, LGBT /queer theory, etc. You bring CDS in its midst and pose questions such as. What are the conceptions of the normal, normality and normalcy? What is autonomy and an autonomous self? When exactly is life not worth living? Considering that passive euthanasia is now permissible in India, who will decide that whether a ventilator can be taken off is rationality the sole determinant of our humanity? How do we define limits? Issues such as Institutionalization, trans-humanism, cochlear implants, special schools /sheltered workshops are critical in CDS discourse. Thus CDS embodies unsettling ideas that refuse to disappear. Let me share some themes that are closely associated with the conceptualization of critical disability studies
CDS and its medical and social rendering
In simple words the medical model represents power. The scientific, objective and humane exterior of the medical model has not been able to hide the fact that, within its practices, there lurks considerable ambivalence towards the people it professes to aid. The essential underpinning of the medical model therefore ceases to understand disabled people as more than the specific problem. Notwithstanding the fact that medical science has and will play a key role in keeping many disabled people alive by reducing their pain and discomfort, the expertise tends to reduce/equate disabled people to their impairments, thereby negating the humanness of disabled person. Whereas Impairment is concerned with the biological such as "lacking/defective part of the body, Disability must be studied in its social, cultural, and historical context. The social model suggests that ‘disability is wholly and exclusively social and has nothing to do with the body. It is a consequence of social oppression (Oliver, 1996, p. 35). Social understanding implies that pain has no real basis in the disabled body as if we admit biological realities then changing the social and political connotations would be shaken.
My submission is that this does not have to be an either-or proposition To mention biology, to admit pain, to confront our impairments has been to risk the oppressive seizing of evidence that disability is really about physical limitations after all’ Rehabilitation professionals adopt practices, which are aimed at improving the ‘quality of life’, which is contingent on normalizing. Not-walking or rejecting nearly walking, as a personal choice is something different however; it threatens the power of professionals, it exposes the ideology of normality and challenges the whole rehabilitation enterprise. The theoretical frameworks CDS takes up, such as critical race theory, cultural studies, intersectionality, and women and gender studies, allows us to undertake the significance of these power relations and to question how professionals become constituted as expert knowledge-producers and holders, who ‘know’ the way forward better than clients themselves. The project would respect the insights of patients and empower the experts who treat them. The phenomenology of the patients can educate about the context of their problems – their current and past lives. In expanding to the "big picture" of disability, medicine can be more effective because such understanding builds better rapport and bases for collaboration with patients as well professionals. My vision is that CDS can create a humane medical curriculum, so that students who can be in rehabilitative work can be educated, empathic and sensitive professionals who relate to anguish of the patients of a variety of cognitive styles or experience. As Diprose [5]would say, ‘bodies that touch are also touched’ (1998: 37). pleThus, the medical encounter disrupts the usual notion of subject/object that marks the distinct relationship between the doctor and patient which is neither closed nor self-contained,
Sexuality
Sexuality for disabled people in South Asia is as much an issue as it is for the West. It has been now a rather well documented fact that within the normative society there has been a conspiracy of silence about the sexuality of disabled people, and it not rated as being a high priority issue even amongst those who are active advocates of the cause of disability. I am going to underscore the missing discourse of desire in studies of sexuality and disability. This submission will scrutinize theoretical influences and debates informing prevailing assumptions about disability and sexuality in India. My attempt would be to fortify and shape often-inequitable sites of contestation, and suggest that disabled women’s subjectivities are many more than ‘asexual’ or ‘hypersexual’ medical interpretations.
As I write elsewhere (Ghai,[6] 2020, p.354 ) a teacher who taught sexuality to students via psychoanalysis, my self-hood remained isolated from my sexual desires. I experienced my wishes for romance, sex and love life through Bollywood films and the stars of Bollywood. For me, it was a different ball game. Whereas other girls enjoyed the “wolf-whistle” and later detested it, I, on the other hand, yearned for the “wolf-whistle.” Soon, I understood that, as a disabled person, I did not have the right to think about dating, intimacy or romantic relationships, as predominantly North Indian society thought of disabled people as non-sexual. Such a negative mental set was entrenched strongly in disabled men’s and women’s inner psyche. In previous writings, I note that, in several societies, including India, where any aberration from a normally accepted archetype is seen as a marked deviation, the impaired body becomes a symbol of imperfection. An exploration of the ways in which the intersection of disability and sexuality involves an understanding of the entwining conversations of normalcy, sexuality, able-bodiedness, moral panic, access and desire, which can evolve the potentialities for desire, intimacy and sexuality for people with a disability. I conclude by underscoring the critical significance of sex education for the people with disabilities
Binaries and deconstruction
CDS can interrogate the use of binaries such as the separation between abled and disabled people. Deconstruction thus dislodges the understanding of identity as fixed and definite. While challenging the fixity, it also attempts to view the significance of context in which that fixity is being advocated.’ . . . While deconstruction can assist in breaking down the oppositions, the task does not end there. --- The idea of TAB’s, that is, temporarily able bodied, though intended, as an indicator of the precariousness of human existence, is extremely helpful in destabilizing the binaries of health/ill health, non-disabled/disabled. Thus, the boundaries, which divide us into categories, are tangentially wobbly, such that constant replication is needed to keep them in check. In a similar way as we perform our gendered/disabled/sexed/impaired identities, we also need to perform what is expected of a healthy body, so that it is not tainted with bodily breakdown. The negation of binary thought opens up the realm of continual negotiation, within which it might be possible to work towards a truly inclusive society. However, we have to be extremely cautious that erasing the binaries is not a not a onetime attempt. -- If we can enhance disability as knowledge it will adds not only to existing disciplines, but also create new scholarship by posing questions about the place of diverse human realities in a society that conventional disciplines have ignored. CDS can enable research to think critically not only about disability, but also about structures of inequality and oppression that affect all historically marginalized groups.
CDS and health
Finally I want to underscore the question of health and the research connected to it As I have mentioned CDS summons some deeper cultural and philosophical questions about how society constructs disability, health, “normalcy,” and deviance. Disability Matters aims to create opportunities for faculty, students, and community members to grapple with what it means to heal, cure, care, transform, prevent, rehabilitate, improve quality of life, and augment the health research and policy. As an insider in India , some critical questions challenge us as to who has access to health services? Are the disabled bodies and minds prioritized within health research? What are the public health implications of ableism, casteism, racism and sexism? What are the dominant narratives about Disabled people’s health, rehabilitation, cure and care in media and literature? The data that we have indicates that Census 2011 and recently held 76th round of the National Sample Survey (NSS) estimates the prevalence of disability was 2.2% in India. The latest survey shows that 26.8 million people with disabilities which implies that prevalence of disabilities continues to rise gradually with age and is highest in individuals above 60 . The projection is that in 2050, 323 million (19.1% of the total population) will be 60 years who will face significant structural and budgetary hurdles. Currently the health system in India is fragmented - quality can be inconsistent and coverage inadequate. The insufficient wages and uneven health systems compromise the situation even more. The steep differentials between regions, sex and disadvantaged populations including Persons with disability can be further detrimental to their wellbeing if not recognized and managed in a timely manner. Disability is public health as well as a human right concern. People with disabilities usually are vulnerable to poor health. though disability is common, health disparities remain largely unaddressed for this population. People with disabilities are more likely to be denied health care than people without disabilities, and face unique impediments and humiliation when accessing health care. In part, these obstinate inequities are roused by an archaic view of disability as the converse of health. Therefore health and medical research efforts are largely focused on prevention and treatment of disabilities with cure as a theme . While efforts to prevent and treat diseases and conditions will always be important and necessary, this myopic focus perpetuates stigma, ableism, and inequities for the disability community. Research aimed at maximising the health and inclusion of people with disabilities is crucial. People with disabilities often face health inequities, which are disparities in health outcomes and access to healthcare.
Here are some key points: Disabled individuals may experience exclusion from education and employment, limiting their opportunities impact their access to health. Further, the primary health condition leading to impairment of disability, disabled may experience greater vulnerability to secondary health conditions (related to primary) and comorbid (unrelated to primary). For example, a cerebral palsy (primary) individual may develop pressure ulcers, urinary tract infections (secondary), or development of diabetes or hypertension in people with schizophrenia. As I argue elsewhere (Ghai[7] 2001:, p.. 29), for poor families with a hand to mouth existence, the birth of a disabled child or the onset of a significant impairment in early childhood is a fate worse than death. In developing countries like India, impairment islargely caused by poverty. The prevalence of impairment, particularly malnutrition, lack of health facilities such as immunisation, is considerable higher among those who are below the poverty line than those who are above it. This situation becomes bleak in the face of environmental barriers, which are both structural and attitudinal. For the poor there is no allowance for disability in any area of life. With practically no access to education or training, they are forced to live a life marked by extreme defenselessness on every score. To demand more from themselves, or what is fair and right from others, does not appear possible. After years of campaigning for the same, activists rejoiced when the government added one question on disability in the National Family Health Survey NFHS-5, and were optimistic that this would be built upon in subsequent versions of the nation-wide survey. However recently the Union government decided to drop the disability question from the National Family Health Survey (NFHS)-6. The omission, and reluctance to map the intricacies that would have understood disabled lives and needs better, raises a serious question: is the government sincere about its commitment to the disabled in the country. The rationalization is that data obtained in NFHS 5 and sample Registration Survey (SRS) 76th round, stating that disability data will ‘not change fast’ is an inaccurate belief. While the SRS does a good job with marking the prevalence and incidence of disability, education level, living arrangements, care-givers, certificate of disability, accessibility and unemployment rate, among others, the NFHS inquired more comprehensive questions. It seeks answers on health and nutrition status, access to health schemes, insurance, sexual behaviour, availability of family planning, use of contraception, domestic violence, household amenities and possessions, lifestyle indicators, and access to drinking water and toilets. There is no doubt that the latter will yield better, more robust, data on the disability sector. While Health Ministry officials claim that the sole NFHS question on disability too resulted in under-reporting, that might actually be a function of training for field staff who ask the questions. The state must employ these efforts — adding questions on disabilities, training field staff, because nothing really justifies any attempt to keep a significant section out of a massive scale count of the Indian population. According to Annica[8] (2023), “This act of invisibilisation of persons with disability isn’t new. The NFHS didn’t really cover health-related aspects of persons with disabilities even in the last survey. All it did was to count their presence through three questions. Moreover, it focused on identifying people across only five specific disabilities, vis a vis the twenty-one that are part of the Rights of Persons with Disabilities Act, 2016.” Preferably, the forthcoming NFHS survey should focus on h detailed studies of health-related data of persons with disabilities. More so as this would have assisted health concerns of PWD in the Covid-19 pandemic. This would been a constructive move which would have enhanced the balanced public health system
I would fail in my sharing , if I overlooked the pandemic with specific reference to disability. It is only when we create intersections that we assess gaps, which places limits on human beings, both disabled, and non-disabled. On 11th March, WHO declared COVID-19 as global pandemic and India too acknowledged COVID-19 as a “ notified disaster” Though India has strengthened protections for people with disabilities, COVID-19 pandemic is an inimitable amalgamation of both an unparalleled health crisis and a fiscal crisis. In the notifications disability is excluded both from center and state endeavors.. As I write elsewhere,( Ghai , 2020[9], p.4 ) “ Foucault ’s discusses a pre-modern soldier to interrogate the difference between the disabled body and the docile body. Thus the ideal of the soldier in the seventeenth century is easily recognizable in body and action. The body is therefore the centre of power. The docile body is subjected, castoff, converted and improved. It seems that the docile body is like the disabled body Docility thereby epitomized a new scale of control. Since we do not confront the disabled body we fail to see the contours of docile body, which replaces the able body”. As Foucault [10](1977: 138–39) puts it what was then being formed was a policy of compulsions that act on the body, a premeditated manipulation of its elements, its gestures, and its behaviour. The human body was entering a mechanism of power that explores it, breaks it down and rearranges it . . . thus; discipline produces subjected and practiced bodies, ‘docile’ bodies’. The docile body in other words is a disabled body which requires sustenance and restrictions, its every movement based on a calculation. It represents the docile body as an evil to be exterminated and the docility of the body is a mirror of the most repulsive injustices of ablest framework.
In the strictest lockdowns in the world the movement of individuals restricted, the disabled were dealt a huge blow with their access to personal care. For almost a week, many of us were baffled and sensed that living is going to be unbearable. I cannot say that I have not known the excruciating pain as a care recipient; I have remembered the feminization of care in a phallocentric culture. It was our resistance that I managed to speak to the disability commission in Delhi. I had to send the Aadhar card and disabled people’s medical certificates as the supportive evidence. The bureaucracies are immune to any civilized understanding of disability. However, finally I did get the “care pass” which I shared with fellow disabled and heaved a sigh if relief. Countless examples indicate that a caring relationship——is knotty. Though we understand that though the dependency is recognized as an essential part of the human condition, the present circumstances should not complicate the fact that both disabled bodies places them at much greater risk of losing their dignity and self esteem. The most blatant limitation has been the realisation that some of India’s largest public hospitals that function with an ablest gaze have remained inaccessible to people with disabilities during the pandemic. “Many cases came to our notice, in which COVID-19 patients with disability suffered due to lack of infrastructure,” I too refused to go to the hospital as the harsh reality was that “No toilet facilities would be available. Further the disabled patients were not attended properly as the hospital staff required assistance for simple things. The incongruity was that the fear of infection through touch was clear, so social distancing kept hospital workers away from disabled patients who regularly assisted otherwise physically As Shakespeare[11] (1994, p. 298) argued that non-disabled people ‘project their fear of death, their unease at their physicality and mortality onto disabled people, who represent all these difficult aspects of human existence’. The invalidation has both psychological and ontological dimensions. As Hughes[12] (2007,68 writes, ‘The first is fear of physical frailty, bodily difference and social vulnerability that is projected onto the disabled other and the second is the process by which social distancing associated with projected fear is frozen into a binary of being that embodies a hierarchy of existence. A society that does not include all its members. In neoliberal times individualism does not build relationship and a warm community specifically in COVID The financial assistance for disabled, provided by both central Government and the states is contemptuous.” Half the disabled don’t have a disability certificate; they cannot get information of government schemes. In COVID reminded us that queries of selfhood does not come easily to those who ensue no social security and other benefits or receive such minimal amounts that leave them below subsistence levels, hardly — and not always — able to survive. In order to validate the impaired body within CDS, I/we accept the notion of fluidity, on which embodied subjectivity is formed and reformed. Though in general disabled people have been imbricated, COVID-19 has been called “a disaster for feminism” (Lewis 2020)[13] as heightened care obligations within the pandemic context negatively impact disabled women’s financial and employment security. Historically feminist issues such as reproductive technology, the positioning of bodily differences, the particularities of oppression, and the ethics of care were understood without any reference to disability. I have underscored the fact that disabled women too like the non-disabled women, can occupy multiple positions. That are taken as responses to the kind of domination that is experienced by patriarchy I think the most compelling and complex analyses of gender and disability intersections are tied to a CDS program. In the dichotomy of cure and care, the quest for process of former, has often been a long-drawn-out costly process and requires an extensive critique. CDS hopes to highlight the contested meaning of cure, dependency and care. Even if dependency is recognized as an essential part of the human condition this should not obscure the fact that some people's experience of some bodies (their impairment) places them at much greater risk of losing their human (and civil) rights than the majority of the population. Someone who, for example, does not use speech to communicate, has a high level of cognitive impairment, and/or relies on others for help with all their bodily functions requires care . While it may help to recognize the way we are all—as social beings—dependent on one another, care requirements can be qualitatively different. Within this context, I think CDS has to engage with society and aligning with the disabled to provide support so that a care policy can emerge. I recall Julia Twigg’s work on older people’s experiences of being given a bath. What she says is enlightening, “One person, strong and able, stands above and over another who is frail and physically vulnerable, forced to rely on their strength and goodwill. Being naked in the face of someone who is not contains a powerful dynamic of domination and vulnerability, and it is often used in situations of interrogation and torture as a means of subjugating the individual.” (Twigg,[14] 2000, p. 21). In contrast to cure, Care" simply means providing support to make differences less problematic, acknowledging that the person will still be different, even though their functional capacity may improve over time. Disabled people have been highly critical of prenatal screening and selective abortion, seeing them as a new strategy of eugenics. The new reproductive techniques reinforce the notion that there is an ideal that humanity must aspire for. Such a position looks at disability as deficit. However, this approach is like a slippery slope to other forms of selection, and thus eventually to a world of new ‘designer baby’ eugenics. However, the ideas of homogenization that designer baby eugenics is to be resisted, as that is problematic. In this view, disability offers a way of resisting homogenization. What is perhaps required is research as well as political work, which can reflect on the social values and structural inequalities that promote the choices. I believe CDS can expand the choices of the disabled women and men to voice out the concerns of not only the reproductive techniques debates but other concerns new technologies such as augmentative communication devices, robotics etc.
Disability matters underscores the fact that interdependence is a key both for non-disabled and disabled people. Despite its empirical vicissitudes and even the violence that sometimes accompany it, care for disabled people is often demonized and its organization is regularly represented as a significant barrier to the emancipation and independence of disabled people. An inescapable fact of human embodiment is that we break the boundary clearly defined as to what is a stable body and to imagine the possibilities of the new space that is established by deconstructing the dichotomy. CDS and of course the project can renew attention on disembodied and embodied beings that very often utilize their bodies as a means of organizing insights regarding the circumstances surrounding them.
Finally, Both health and education are significant issues as they still continues to fight many battles of access, affordability and exclusion specifically disabled people. While policies have advocated inclusion, CWD are still constructed as the "problems", thereby making a mockery of the supposed mainstreaming. This represents what is called an add-on approach or an after-thought approach, in that the child is simply added to the program. Thus the child is “in but not of the class" (p. 284). The education policies have the capability to have a considerable effect on health. As Batra (2020) reminds us “There are several sections of society, including women, minorities, people with disabilities and the poor, whose needs require policy redressal. NEP 2020 mixes all these categories of disadvantaged and deprived groups into a single category: Socio-Economically Disadvantaged Groups. Not surprising, when put together, the disadvantaged groups make up over 80% of India’s population”
Research and practice agenda
I have always been troubled by “giving voice” to the disabled and many marginalized constituencies what does "participation" truly mean in terms of scholarship? The potential of CDS is that instead of attempting to "give voice" we need to "facilitate voice and agency," in our theoretical frameworks and research endeavors. Research in CDS has to be transformative to the extent that disabled people (and other marginalized groups) are able to use such research as an aid to bringing about changes in the status quo. It is only when we understand the nuances of being disabled, that we can appreciate the contextualization of their lives in myriad of economic, political and cultural factors. CDS points out to several important methodological questions that are raised in the context of researching disability. The general critique shows that the present disability research has taken place within a positivistic and essentialist theoretical paradigm, which is oppressive for the disabled people. Several researchers note the scarcity of emancipatory research in critical disability studies. Emancipatory Research becomes a transformative endeavor unembarrassed by the label ‘political’ and unafraid to achieve a relationship with emancipatory consciousness. My understanding is that rigorous research should struggle for a better world. In contrast to the traditional beliefs, this approach necessitates the generation and production of meaningful and accessible knowledge about structural components such as economic, political, cultural, and environmental, which create unlivable conditions for the disabled people and their families.
In my understanding human suffering is universal. I am enticed by the vision of CDS because it seems to contain a space to reflect upon the nature of this suffering both in its existential and political reverberations. I am aware of the fact that the project carries a revolutionary character of the health research. However I do feel that PROJECT will have a tradition of “engaged Practice” and a relationship with social change. As a scholar of critical disability studies, my vision would be teach and practice in a way that students intellectual pursuit are reflective, regarding their own subjectivity. Notwithstanding their potential for advocacy, the students must engage in a transformative process of contemplation, so that they think critically, understand their disabling parts which can touch their own and other’s pain, and anguish, so that they find the courage to move beyond an exclusive concern for reconfiguring the self. Thus self discovery will make them work with other human beings in need. At the heart of CRITICAL Disability Studies Program, lies an idea that respects vulnerability while actively constructing horizons of hope. This can be done only if DS can bring in the methodological tools that can communicate these problems/issues to policymakers and assess the relative merits of varying strategies to solve them. In my understanding CDS has the potential of engaging with some of the most pressing debates of our time such as questions about the beginning and end of life, prenatal testing, abortion, euthanasia, eugenics, reasonable accommodation in schools and universities, public transportation and “care” of the non-normative body, disease, disaster injuries, and healthcare. Disability matters because it forces us to interrogate charged ethical and political questions about the meaning of aesthetics and cultural representation, bodily identity, and dynamics of social inclusion and/or exclusion. Finally. I want to stress that CDS is something that is very easily doable; it doesn’t required expensive equipment to set up etc. The project Disability Matters is in an ideal position to oversee the fluidity of the field, which easily and seamlessly flows into other branches other disciplines effortlessly.
Conclusion
As I write elsewhere (Ghai, 2015, p.) “ bell Hooks (1995) who says that, achievement of colonialism does not require the assumption of power in someone else’s country. Rather colonialism can be accomplished by dominant and normative hegemonies through social apartheid. The understanding of ignorance of margins should remind us that the apartheid is always subject to constant revision The goal of CDS is to find answers to more fundamental questions such as the meaning of humanity, at the same time safeguarding against cynicism. The potential is DS is substantive. However hope might be an accomplished liar yet, I believe that hope and promise is all we have. ☹ ☺☺
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Our work
How we understand being ‘human’ differs between disciplines and has changed radically over time. We are living in an age marked by rapid growth in knowledge about the human body and brain, and new technologies with the potential to change them.