My interest in the area of disability has been almost a kind of decade long. I was more involved with the study of gender and more specifically women's movements in Indian context. That was my PhD dissertation. From there I moved to look at gender and development issues, largely in the context of indigenous women, tribal women, and I was interested in the kind of access they had to resources. I was interested in And it was by accident, I should say, that I actually came across or thought of, you know, doing a study on women with disabilities. because I thought that I hardly read anything about them in the literature on gender in Indian context and there was hardly any study in sociology or anthropology also on disability per se. So disability as a subject was kind of totally missing, invisible. something that only social workers did or say rehab scientists did or medical professionals worked with like physical therapists or you know occupational therapists so there was and I was kind of you know I felt that And is it, I think I had that inkling that it was not just about medical impairments that, you know, disability is all about. There's some, as sociologists, we are always suspicious of, you know, the things that we see all the time around us. And in that, I think, context, I started to look at women with disabilities and This was also interesting that I wanted to look at disabilities in the rural and agricultural setups because I thought I knew a little bit about what was happening in the urban context. There were organizations and taking care of children with disabilities and there were vocational training institutes and so on. Delhi has a lot of those things. But I did not know anything about what was happening to women in agricultural setup and how did they negotiate with work, family and community. So in a sense, from there, my journey began and gradually I moved from my ethnography with women in Haryana, which is close to Delhi. It's a very patriarchal context where women as it is, they are not in a very enviable situation. And I was thinking that women with disabilities would not have any chance to survive in such a sex-skewed state. But I found that they were surviving and they were doing well and they had, you know, options, even in a context where, you know, state was totally absent from the scene. So I think, and this, you know, brought me to think about state policy, law, why state was absent, why, you know, state, how disabled actually then survive, they manage, they negotiate when state is so missing from their lives. State was there only in very limited sense. that some kind of disability pension was being dispersed. And in this process I started to look at the broader picture. And I think my presentation is all about how in the last 12 years I have closely watched what is going on in Indian scenario about disability alongside doing my own research and research of my students at least six students are working on different aspects of disability with me to have finished their PhDs and which is like you know again something that is not really happening in too many universities. So you don't find too many, this number of students working on disability at one place. So today, you know, why I thought about talking about disability identity, because when I am working here, looking at disability studies program in the American universities, I find this term, two terms, disability identity and disability culture. constantly being talked about that you know this identity and culture is you know so much ingrained in the lives of people and they live by a certain kind what what is seen as identity and there are others who contest that They can't be a disabled identity. So it just, you know, took me to think about, is there a disabled identity or identity of a disabled in Indian context? And that is how, you know, I just begin with my presentation. Here, you know, when I looked at disability movements and disability studies, what I have seen over the last two decades is that there is something like disability movement. You can't say that there is no movement. It's all scattered. It's all fragmented. But it is there. The consciousness, disability consciousness has come. But, you know, initially it was all about rhetoric and activism that we need rights and we need, you know, infrastructure, we need access and so on. But gradually we are recognizing that there are some, a very small group of scholars. who have started to make intervention, academic interventions that you can't just talk about, you know, politics without having any base in research studies. So what we are recognizing today is that the politics that has emerged in last five years, I would say, has some basis in academic research, although much requires to be more specific than done because we don't have documentation, we don't have published material. That is one major problem when students in my own university, they want to do disability research. I often find them coming to me and asking for references, asking for a place where they could discuss issues. Because in their own disciplines, they are totally isolated and they are alone. But what is happening is that the politics that we are seeing today, disability rights politics in Indian context, it is much contested. It is much more... you know, divided. It is much more fragmented that you see here. Here, you know, there are some common issues where I find people agreeing on certain basic issues. But there, you know, it is because it is kind of coming together, they are still talking a lot about each other, against each other. And there is a context to it because we are going to we were supposed to pass a bill which would have resulted in a disability law in India and last two months a lot of debate has been going on about you know what should be the form of this bill and whether this bill should be passed at all so if you ever have a chance to just you know have a google you know what is happening around disability law there's so much of contestation suddenly which has happened i have never seen so much of protest movements and you know um the writings and um suddenly there seems to be a kind of outburst of the energy from disability rights activists and which is very positive i think but it remains very contested I'll just quickly run you through how, you know, when we talk about disability question in India, from UN Decade of Disabled Persons, actually this whole debate in India started to crystallize. So it was not before, say, late 80s that we find that a talk about disability rights began. And our state policy, when we look at state policy in relation to the disabled, we find that in 1952 when the state established social welfare boards, disabled were one of the subjects and they were actually handicapped. They were called handicapped or crippled or, you know, by blind and so on. But the term disabled was not there. but they were welfare subjects and gradually they were drawn into a kind of development discourse in in by late 80s and in last five to ten years I would say the talk about right-based model has something you know that state has started to acknowledge so if if we look at you know the you Indian state as such, we had... We had a very, very... charitable, I would say, approach towards the disabled. And it remains. It remains at a certain level. But, you know, the talk of rights has also come. Which actually resulted in a PWD Act, which is People with Disabilities Act in 1995. And interestingly, you know, very little activism actually pushed for this kind of act. It was, I have argued elsewhere that, you know, it was the international context which actually pushed Indian, Indian state to, you know, do something about the disabled and not so much to do with disability rights activism in India because it was hardly there. There were some groups, very, very small groups who were talking to, who were lobbying with the Indian state, but nothing like here, you know, here we have had a major history of disability rights activism. pushing for what we see as ADA, the law on people with disabilities. But there was hardly any activism, but state actually came up with the act, which BWT Act 1995, which actually had a lot of provisions, but it remained very developmentalist in its approach. It saw disabled as beneficiaries of development. And it provided for, as I have written here, it provided for some accessible services, reservations in jobs, especially public sector jobs and educational institutions. Some bit of pension, like when I was working in Haryana in 2002, the pension was, today it's 600, which is like $10. So, you know, it was 200 then, which is nothing really, but, you know, it is just nominal. Then state also has several institutions where, you know, rehabilitation work is done. Probation of assistive devices, like, you know, we are talking about a country where even basic assistive devices are not there. Like, you know. you could do with glasses, but glasses are not there. So, you know, this is the kind of affairs that we are talking about, that basic assistive devices is something that state, you know, distributes, these state agencies distribute to people. And then community-based rehabilitation services, which is just beginning to come because, again, the idea that there's a... It is the communities who take care of the disabled and not really the state. So, you know, the services should be at the level of community and the community should be able to participate in the way, you know, disabled negotiate with their lives. followed by this national policy on disability. This is again, you know, a little further step on the PWD Act where women and girls children with disabilities were included. And, you know, for the first time, because PWD Act did not talk about gender at all. But 2006 policy talks about gender. But I think the whole debate actually starts from India signing UN CRPD. in 2008 and once Indian state signed UN convention then this whole debate about that now we need our rights so activism actually starts from you know 2008 onwards and since then a large number of meetings discussions have held been held where disabled organizations have sent their representatives And they are, you know, part of these larger discussions and this new law that we are talking about, draft that we are talking about, actually has been, you know, a product of a lot of consultations across the country. When we, and this is also just to give a very brief idea about when we talk about disability rights movement, they did not arise in a vacuum. There was a very strong women's movement which was at the back. Then there are movements of the marginalized like Dalits, lower caste people, environmental movements and others, new social movements. And they have, and a lot of these activists actually have had very strong connections with other social movements. And I think that needs to be recognized that there was already a kind of political context within which these disability rights movements were emerging. And initially, they were only single disability organization like National Federation for the Blind and then National Federation for the Deaf and Dumb and so on. But gradually, as the movement, you know, took momentum. We are coming to realize that the cross disability groups also started to form. So disability rights group is one such group. Today we have alliances of disability rights activists across national and international networks have been. formed, a lot of our disability organizations are part of the international networks. So they may not be talking to each other, but there's transnational disability rights discourses move from here and move from there. So there's a lot of talk and discussion going on, and which is, again, very, very critical to the way disability rights are being conceptualized in India. And then these international non-governmental organizations are there. The non-governmental organizations are there, which actually are mainly concerned with the delivery-based work, access to education, access to vocational training, and so on. Academic research, as I just said, it has just begun in very, very few universities. Only two universities have now disability studies programs that have just come up in the last three, four years. And, you know, in my own university, there's a lot of, we are in the process of formulating a disability studies program because we have a large number of Students who are interested in disability research. The role of media is very critical. In the last 10 years, again, I would say that 10 years have been critical for us. There have been some Bollywood films, you know, some superstars like Aamir Khan. They have, you know, been very instrumental in making films which are disability friendly. And that has created a kind of, you know, platform for talking about disability issues. He not only, Amir Khan not only made a film, he also in one of the state run channels, he presented a program with this whole discussion on disability, which actually has created a great deal of, you know, interest in at least the mainstream media, I would say. I'm not too aware of the local media, but... mainstream media, print media is talking about it, social media is talking about it, and of course the films are talking about it. But again, I have been talking about disability, but how do we conceptualize disability? What is disability? And I think that is something very critical and largely if you look at the Western models and Western context, there are three ways in which, prominent ways in which disability has been conceptualized. One is the medical model, which looks at disability as centered in the individual. So it is. impairment center that you know you have an impairment and In that kind of model, the individual has a responsibility to come back to the normal self. So in a sense that you have to take recourse to medical professional to help you to get back to normalcy. And that is the kind of medical model and which has been totally critiqued and kind of dumped by the disability activists saying that, look, it's not about our impairments, but it is about the social model, which is like the structures are oppressive. The structures are oppressive. If you don't have an accessible building, then you can't let the wheelchair user come into the building. If you don't have an elevator, how would he go to the fourth floor or fifth floor? So, you know, it talks about prejudices. It talks about the oppression that disabled face. because there are stereotypes about their capacities and their capabilities. And also, the infrastructure does not allow them to have their full potential. In the labor market also, the disabled are rejected in jobs because they are thought to be incompetent, either socially incompetent, intellectually incompetent, or functionally incompetent, physically incompetent. So in some sense, you know, social model... It is something that across the board disability movements have embraced and they talk about how this whole idea of normalcy has to be critiqued and deconstructed because who is the normal and who's able. and this whole idea is based on certain kind of social construction and which needs to be totally you know derailed but then there is you know the post-structuralists have come up with this idea of embodiment and they have brought the body back and they say that you can't you can't talk about disability without talking about the body because There are large number of disabled who live with pain and suffering and they have to constantly interact with the medical institutions in order to just, you know, fix their everyday life. So, you know, disability does not mean that it is all there, you know, environmental barriers. It is also about our, you know, bodily questions. And that is something. which is very critical and which is, you know, in the West, especially, I see a lot of people moving towards that kind of model. Of course, then there is post-colonial theory, post-colonial perspectives on how disability is produced in developing countries, has been produced because these are all post-colonial contexts where, you know, the subjects themselves have been projected and seen in certain, you know, negative. ways and post-colonial theory of course has a lot of relevance for South Asian context and feminist disability perspectives where you know gender and disability interface is seen to be critical that you know it's not just about you know disability per se but how women you know experience disability how men experience disability experience disability and then The whole gamut of disability, disability itself is so complex because it moves from one spectrum to the other. So you have some disability impairments which actually do not disable you in everyday life, but there are other impairments which can actually significantly alter the life of people. So disabilities and its responses are contingent on the nature of impairment also. and the nature of social environment within which they meet. But, you know, when we look at our own context, South Asian context especially, I've come across, you know, when I was trying to define what disability was, I came across three ways of, you know, looking at major ways of looking at disability. One, because I did not want to assume that somebody who I see having impairment is disabled. And that's what I came across when I looked at. When I was talking to people in the villages and I was trying to ask them what is your idea of, you know, and of course translation of disability itself was an issue that how do you define who is a disabled, but their idea of disabled, they used a particular term ashrat. Ashrat is actually translatable as dependent. So and that, you know, somebody who is dependent. on others is disabled and in that sense who is disabled, who's dependent? Somebody who can't be functional in everyday life. In an agricultural setup where manual work is so important, there you know somebody having limb deformities would be seen as you know disabled and not so much with intellectual disabilities or you know hearing impairments and so on. So in a sense. And at another level, I see it in cultural terms, Ashwit dependent, the term is so broad that so many other categories of people can be included there. You know, children are dependent, elderly are dependent. Then, you know, there are other categories of people who you could, you know, temporarily include in that category or, you know, they can just come out of that category. So it is a much more... broader category. In my other study in Delhi, I found that where I was looking at women with psychosocial disabilities and when we tried to find out who they actually saw as a woman with psychosocial disability and they would use the term Dukhyari, you know, somebody who's sad or who's very, you know, how do I translate it, who's not happy with life or who has all problems in life. And, you know, then it is a very broad category. Again, it is not, it does not tell us only that, you know, she has problem of mind. But you know it's more of a social category that you know somebody who has lost her husband or who has lost her job or whose child has died you know anybody could be in that category. So it's a much broader category. So there are cultural ways of defining disability as against official and state definitions which PWD act in our context defined they had seven categories of disability blindness, low vision. leprosy, you know, locomotor difficulties and psychiatric illness. So there were seven categories. Only these categories and rest were not even included in, you know, disabilities. So these official and state definitions restrict the way we look at disability. And that was my methodological problem when I started to look for who is a disabled. State had its own definition and, you know, people had their own definition and they had hierarchy of. People had hierarchy of, you know, disabilities. And then, of course, UN, World Bank and WHO have been coming up with these evolving. They are looking at this WHO report in 2011 has talked about disability as a biopsychosocial concept. It's an evolving concept where, you know, they talk about environmental barriers. They talk about biological issues. They talk about psychological issues. so they are trying to you know see it as a kind of evolving issue but another issue is also who you figure In terms of numbers, because that's another very, very huge issue that how many people are disabled? And census is one of the ways and NSSO is another, you know, organization which number people. And they come up with, they have their own issues about, you know, defining disability. Some depend on state definition, some try to be open. And they clash, you know, the numbers clash. They don't really talk to each other. So we are not even sure how many people are actually, they have disclosed themselves as disabled. In 2011, actually, census for the first time, disability enters into the census as a category. So that is another thing that, you know, just, you know, recently that it has entered. But there are a large number of people who don't want to see themselves as disabled. So they would not disclose their identity as a disabled. When we talk about this disability in South Asian context, I think this is, I don't have to explain that it is so. Variable categories, so complex category. It is all, you know, age, gender, caste, class, region, religion, rural, urban factors actually impinge in the way disability is constructed. So, you know, like in urban areas, as I said, that disabled might find some kind of group or, you know, group to fall back on. But in rural areas, there was no category of disabled as such, you know, where people from, say, lower caste and higher caste could put. themselves in the same category. They would not. They are high caste, I am kind of low caste. That is also one of the major ways of identifying yourself. That is one problem about defining disability in our context is also that these identities people take over so many identities. It's not disability as a single excess identity becomes a problem there. And, you know, there is this common explanation across religion that we find, you know, karma theory being extremely critical. Constantly people talking about disability as caused by bad karma. And, you know, this belief in rebirth is something so critical to Hindus and kismat to Muslims, faith to Christians. And but there is some, you know. These cosmological issues, the cultural issues, the way they come in the discourses of everyday life of people, it remains critical. Because when we think of disability, disability is not in an individual. So, for instance, a child is born with disability, her mother would be blamed for maybe causing her disability. It is her bad karma that is deeds. which could have caused her to have a disabled child. So these discourses can't be ignored because they come in the way constantly when we are trying to talk about disability. Then there are charitable model and charitable model again is something which has worked in our context in the absence of state support. It was always the charities which were working for, you know, although they saw themselves as, you know, kind of charitable objects or beneficiaries, but nevertheless, they were always around. So for the education of the disabled or for the employment of the disabled, you know, charitable organizations have been working. And one of the ways in which, again, the Western models totally reject charitable model is also problematic because I see that, you know, in the lives of... Disabled, one of my colleagues has done some work in Hyderabad recently and he was talking about how they see these charitable organizations as very empowering institutions. For people who are poor, these organizations are very, very empowering. And then when we talk about stigma, stigma is something again in Western disability rights movement, stigma is something constantly being talked about, but I feel it's a kind of black box. How do you talk about stigma? Stigma in what way? How? People even don't understand what is stigma, you know, in a sense that we may have a certain understanding of what is stigma. It's a whole, you know, dog. when we talk about stigma, we have to ask people about their whole way of life. It's not just about, you know, in one sense or the other that we are talking about. And then again, you know, say people with leprosy are actually stigmatized. But, you know, people would say in my field area with the speech impairment or they are not stigmatized. So in the same sense, then you have... stigma operating at different levels and the prejudice operating at different levels. Then, you know, disability, as I just said, that it is embedded in relations. Disability is not so much about, you know, individual problem. Although there is so much of debate on this whether we have individualistic self or individualistic self and the debates in sociology, anthropology about Dumont and so on. But it is also true that there is so much invested in social relations. So disability is, you know, if a child has disability, her sibling would also be seen as somebody who's affected by that. So it's not that, you know, she is alone in the process. And then there are issues of cultural competence. A child with intellectual disability in the rural context may not be stigmatized or may not be excluded. He may be sent to, you know, do the grazing. Whereas in the urban context where there's so much premium placed on educational competence, getting a good job and so on, he would be seen as a culturally incompetent person. So again, there are variations around these issues. But still, you know, till the time the state actually intervened, disability continued to be managed within families and communities. And even today, I would say to the large part, families and communities manage disability and they don't necessarily exclude. There are all kinds of stories, positive stories and negative stories. Families are altruistic sites. Families are also oppressive sites. So, you know, we find a lot of, I just came across an article where, you know, Indian context and American context have been compared, especially in relation to mentally ill people. And it was argued that, you know, South Asian families don't abandon their mentally ill. They continue to keep them, but these are marginal to the families, whereas in the American context, they become the homeless. So in a sense that. They are abandoned and they are out in the streets. So in a family and community is something very central to the way when we think about disability. And of course, the charity institutions and exclusion and inclusion here again, I want to say that who is excluded? In most contexts we see that it is the lower caste people who are excluded from different contexts. So, you know, exclusion also happens on different, you know, So exclusion is not just because that you are a disabled, but there are other factors which work here. And like a woman with no children would be more seen as more socially disabled than somebody who has a child. So how do you and now, as I said, the state is gradually coming in. What are the broad terms of discourses in disability rights movements looking through the culture? Again, you know, very familiar to what is happening in American context. Although, you know, the idea of independent living is very different there. What is independent living? I was talking to a disability rights activist and he was saying, look, you know, for me, independent living means that I live with my family. That is, you know, independent living. So in a sense that they don't want to be a part of community of people just like them, but they want to live with their own families. So that is the idea of independent living. They want to be independent, they want to have a job and they want to be economically self-sufficient, but they don't want to be outside of the kinship circle. And of course, disability as a development issue is something very, very critical because again, you know, this whole discourse about that poverty breeds disability and then, you know, there's a vicious circle is something which most of the state is also interested in because state wants to see disability primarily as a development issue and not as a rights issue, not as an issue of, you know, attitudes and cultural representation and so on. Thank you. Lastly, of course, the law is something that, you know, I just spoke about that law is the most contested field, site at the moment because all efforts are being made to change law because with law, a lot of things like say women with intellectual disabilities who had no You know, they are still, they could be abandoned by the families. They are deprived of property because the law, you know, remains colonial law and, you know, it needs to be changed. I would, I think, just leave this. You can see, you know, how this gender and disability interact in our context. But idea of personhood is very important because, you know, who is a person? And I've talked about this. Who is a person? How do you look at the self of South Asian self? How South Asian self is to be understood? Is it, you know, in the same individualistic term, largely here in the Western context or in, you know, context of family and community? What is happening today is that this globalization has made a lot of changes. And I've talked about these international networks and networks. But. Still, you know, there is very, very little awareness of disability rights, especially in some parts of the country, I would say. Like I was working in North India, and in North India, there was hardly any effort. In the last five years, some efforts have started. But in South India, there's a lot of awareness because these South Indian states are better governed. So, you know, disability also becomes an area of good governance. and so but what I found recently is that disability identity a new kind of disability identity being articulated here that you know who's getting pension in the village when I was talking about so they would identify immediately oh so and so is getting you know pension So now on the basis of the idea that you know if you have an impairment you would you are entitled to pension. A new kind of identity is which was not there 10 years back when I spoke to people they had no clue. But today I think pension has made that kind of difference. Then microfinance you know that there would be groups of disabled people coming together saving schemes. So again, you know, it's a state program which has created a kind of identity for the people. Then reservations. Reservations, again, though it's a contested area, but like in jobs and in schools, if you are getting into, so you become a quota person, you know, so you are coming through a quota. So like earlier it was scheduled cast and scheduled tribes as quotas. Now, disability quota, which is the product of, again, PWD Act, 3% reservation. I think it has also created a kind of new identity. But when we look at the disability rights movement, there are a number of problems. Movements are largely drawn from people who are, you know, the urban activists. And this is not surprising because most of the social movements are such. But in disability rights movement, it's very, very visible. Although now some work is being done in South India and some grassroot organizations are also coming up. But the leadership is largely the middle class, urban, educated, and male, largely male. And so, I think that's a really important thing. This identity politics, the major identity politics which I see is between the disabled themselves who are seeing themselves as individuals. And the parents of children who are, especially with those with intellectual and developmental disabilities, who don't have a voice of their own. So there are many parent-run organizations in India where, you know, they would like to speak on behalf of, you know, persons with developmental disabilities, but they are brushed aside that you are parents, you know, parents are seen as bad people, as you know. Not really that guardians actually mistreat this whole idea that the family is mistreat disabled. And so there is a great deal of contestation. Yesterday only I saw one of my students who did work with families with autistic children. She has an autistic son. And she wrote very strongly in one of the social media sites about, you know, this disability rights and parental activism. How do they go together? You know, because at one level, if we see disabled, it's not the disabled who's kind of... The person himself who's kind of excluded but the families don't have the support structures. how do families actually bring up children? If families are not provided that state support, then, you know, how does it come about? So families are very critical in the debates, but families are being pushed aside constantly. And then there are hierarchies, like, you know, visually disabled are very dominant in the debate. People with locomotive difficulties are very dominant. are dominant in the debate. Others are like, you know, people with hearing and speech impairment, especially hearing impairment, they come largely from very poor sections. They are not articulated, they are not English educated. So they are also not, you know, prominent in their debate. They're one of American anthropologists who work with the deaf communities in India. She actually wrote a very poignant point about how they feel excluded from the debate which is going on in the English social media. So in a sense that there are many issues here. But then again, you know, when we talk about identity, identity being formed around these certain kind of politics and this identity remains very fractured identity because most of the time we do not see the disabled identifying themselves as disabled. Rather, they would identify themselves as, you know, belonging to so-and-so family or so-and-so community or so-and-so ethnicity. And class is very critical here. So in a sense that what brings them together, how identity is to be this identity to recognize this identity intersectional lens is very important. And like here, race and gender become, you know, come together in our context, caste, gender, disability. They have to come together in intersectional ways to actually identify that there are multiple marginalities that work at various levels. And they can't be just one. kind of singular identity, which, you know, could talk about rights, because rights, again, what rights we are talking about, whose rights we are talking about. Majority of the people have issues about survival. So those rights, rights to live as people who have some access to resources, to work, to education, to employment, as against those who have everything, and they are talking about more you know identification more recognition assertion and these are you know to prominent, you know, I think dichotomies that I see in our context. So I would just like to stop here. Thank you.