|No. Of Credits
Semester and Year Offered: 1 and 3 Semester (Monsoon Semester 2017)
Course Coordinator : Prof. Anita Ghai
Email of course coordinator: anitaghai[at]aud[dot]ac[dot]in,
Aim: The course is designed with an approach to introduce the M.A students of varied disciplines to the discourse of Disability Studies. It will incorporate psycho - social, political and cultural perspectives. Through the exploration of these perspectives, the students will be asked to engage with concepts such as subjectivity and theories of disability and issues related to childhood, care, gender and culture. As per the AUD’s vision, theory and practice will be woven into all the modules. Drawing from the work of scholars from both the west and India, personal and professional experiences, the programme will engage with students in a transformative process of reflection, debate and discovery. This course will encourage a field orientation in which students will write a long essay, a short story, a poem, a song or a biographical note in the context of the theoretical understanding that will evolve through the course.
The course will examine core concepts of Disability Studies and the emergence of disability as an onto-epistemology. The aim is to immerse students in a highly participatory and provocative engagement with narratives, theory, policy, representation and culture seen through the lens of disability. The course begins with the question of what it means to be “human” and progresses to an understanding of disability in various contexts including childhood, the role of the family, the construction of subjectivity, personal narratives, and others. There will also be an engagement with questions of how culture and disability as well as gender and disability intersect. Further, the course will expose the students to key definitions, terminology, certification mechanisms and theoretical orientations that comprise current research and scholarship in Disability Studies.
Brief description of Modules and Reading list:
Module 1: Introduction
This module will explore questions around what it is to be “human”? Is disability a human predicament? The module will attempt to understand disability as a fundamental human characteristic. To appreciate disability is to embrace the human condition. To fear disability is to fear our humanity. And that fear of who we are—of our potential—underlies the drive to eliminate foetuses with detectable possible disabilities. Very often we think of “human potential” in terms of those characteristics that we perceive as desirable: better-than-average academic performance, perfect bodies, no illness, better-than-average physical skills and others. But very few of us achieve better-than-average performance in anything. The reality is that all of us are likely to experience disability at some point in our lives. We would debate whether Human Studies can engage with questions such as how certain people are regarded as on the edge of all that counts as human.The human norm generally stands for normality, normalcy and normativity. We will therefore think beyond ideas of the human to consider new ways of building our understanding of disability. Similarly, Disability Studies explores how disabled people figure on the edge of the ordinary orders of daily life, including education, work, leisure, and love, and it studies how such exclusion is normalized. This module recognises a tradition of academic argument in which the presence of disability, no matter how we define it, has a profound impact on our construction of the human.
Module 2: Disability Narratives: Self and Subjectivity
The understanding of narrative plays a crucial role in how we imagine social worlds. In Disability Studies, narratives enable us to develop a nuanced understanding of the lived realities of lives with disabilities.Any narrative is a story that influences human lives. Disability narratives teach us about what kinds of norms have historically been ascribed to bodies and minds.Disability scholars have developed a variety of models for understanding how narrative operates in the creation of disability as a socially contested category. Various kinds of relationships shall be explored in the course including the manner in whichthe narrative locates itself in relation to the self and vice versa, the relations among the characters and in relation to themselves. There shall also be an analysis of how a person with a disability strategically makes preferred identity claims and how identities are constructed and/or performed.The influence of the self on the development of the narrative and the associated interpretation of the narratives as well as the agency of the subject and the construct of “normalcy” shall be explored.This critical terrain of the self will be studied through the various narratives enlisted in this module as well from the discussions that will emerge in class. There shall also be an engagement with personal conflicts and self-doubts that may arise out of the narratives of people with disabilities. The student has to engage with one’s own subjectivity as well as the subjectivity of the other who is different. For engaging with the disabled person’s pain, we must enable ourselves to be self-reflexive and in touch with one’s own emotions, which in turns enables a kind of sensitivity to be in tune with the needs and feelings of disabled Hopefully the interactions based on feelings of mutual respect and willingness to listen and learn can potentially transform the lives of persons with disabilities.
Module 3: Theorising Disability
Virtually all humans experience a significant illness or disability at some point in life. Yet, economic, political, social, and cultural factors complicate the medical frameworks through which societies normally address disabled bodies.Drawing on scholarship in sociology, history, psychology, anthropology, cultural studies, literature, and other academic fields, this module will understand the theories of disability. Theory is essentially a way to make sense of the world. We come to theories because we are hurting intensely and want to comprehend and grasp our disabling selves.Most importantly, we see in theory a location for healing. This model will discuss the theoretical conceptualisation of disability. We begin this with the medical model, which represents power. 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 disabled people to their impairments, thereby negating the humanness of disabled person. Further, the social understanding in which the problem of disability is to be located within society. Disability, therefore, will be studied in its social, cultural, and historical context as much as the personal conditions of impairment and functioning must be studied in their medical and educational context. This module analyses disability and impairment and the relationship between the biological an the social in the understanding of disability. Further, we discuss the issues of definitions, terminology, and certification in the Indian context.
Module 4: Care in Indian Families
This module explores the ethics of responsibility and the role played by the family, society and the culture in creating disabled identity and analyses disability within the context of childhood.
Each reading will go beyond critiques of the deficit productions of disabled children’s development. The aim of the course is to raise expectations around disabled children’s childhoods. There will be an attempt to question the spectre of the ‘normal child’ and seek productive ways of moving beyond the ‘normal’/’abnormal’ binary.
There will be a discussion of family and disability in the Indian context. Families with a disabled household member are some of the most vulnerable groups of society. The birth of a baby with a disability or finding out that a child suffers from a disability can be a traumatic event for parents and can have profound effects on the entire family, especially when the family is poor and displaced. Notwithstanding the inner strength of the family, this section will discuss the particular difficulties that inevitably arise in caring for the disabled as well as the coping mechanisms that these families use to cope with the challenges of everyday life. This module also analyses the role of the state in offering support to the families of children with disabilities.
Care and dependency will be discussed in context of support and assistance for people with disabilities. Who is available to do the labor of care and who gets the care? This is the guiding question of this section. In the dichotomy of cure and care, the quest for the process of the former has often been a long-drawn-out costly process and requires an extensive critique. Disability Studies has the potential to underscore the contested meaning of cure, dependency and care. 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 as well as a burden to caregivers.
The contention of Disability Studies is that the feminization of care in a phallocentric culture makes participants in the caring relationship – regardless of gender identity – necessarily subordinate. 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. Similarly, norms surrounding both the giving and receiving of care, while dictated in part by the nature of human need, is also conditioned by cultural and ethical understandings and by economic and political circumstances. The distribution of care therefore is a question of justice and the interactions between carer, the cared for, and the larger community are appropriate matters of ethical inquiry.
Disability is defined by culture. The tendency to categorise all people with different impairments as ‘disabled’ is a fairly recent phenomenon emanating from the west. Many traditional societies do not have an exact equivalent in their own language for the word ‘disabled’, and they can seldom match the three-tier concepts in English of ‘impairment’, ‘handicap’ and ‘disability’ espoused by WHO and disability theorists; they usually do, however, have words for specific impairments such as ‘deaf’, ‘blind’, ‘lame’, and so on. For instance langra, aandha, behra and more recently divyang are the words that are used in disability discourse. We need to understand that what is counted as a ‘disability’ (ie. that which prevents someone from fulfilling the roles normally expected of them, especially as regards education, employment , marriage, motherhood), differs from one culture to another. The course will debate on how we understand the cultural differences of a disabled identity. This discussion sets the stage for our discussion of the disabled attempt to define themselves against both their particular cultural background.
The main objectives of this module are:Understanding the relation of culture to social and economic structures and to languageComprehending the relation between cultural aspects such as perfection and normative hegemony Is culture best understood as public or private—as within people’s minds, or within the symbols that convey meaning of disability between minds? In other words, the way societies think about disabled people is determined by a variety of cultural variables, including the nature of the impairment.
Module 5: Gendering Disability
What is the need to understand about gender in Disability Studies? What is the relationship between gender and disability?
How do men’s and women’s experiences of disability relate to each other? How does normative heterosexuality affect gender identities of disabled people and how does a disability perspective be used to question gender binaries and normative notions of sexuality? In this module, we understand that the experience of disability is always gendered. This is not to say that disabled people have no common ground, no shared experiences of disablism, but that the forms of disablism are always refracted in some way through the prism of gendered locations and gender relations. It is true though that disabled women, in general, do not deal with the same oppressions that non-disabled women do primarily because disabled women are not seen as women in an able-bodied society. For example, women with disabilities have not been 'ensnared' by many of the social expectations that feminists have challenged.However, this confinement is actually indicative of a negative rendering of their lives as the usual roles such as marriage and motherhood are out of bounds for them. While it is true that the specific issues for women with disabilities may vary from those of non-disabled women, the reality of womanhood which includes the usual experiences and fears of a patriarchal society are bound to be similar. However, with a body that does not 'measure up' to societal norms, the situation becomes precariously unbalanced. Further, we debate about ethical questions concerning genetic testing, selective abortion, reproductive health, sexuality and others from a disability lens.An attempt shall also be made to understand the differences in the discourses of disablism and ableism in matters of sexuality. A “disablist” perspective would provide for an analysis of how impairment and bodily difference decenter dominant notions of sexuality. An ableist perspective would focus on how the hegemony of certain discourses of sexuality premised on narrow definitions of embodied desirability and normative heterosexuality pose restrictions to the construction and expression of sexuality across social groups including disabled people. Thus, both disablism and ableism together shape the understanding of lived sexualities of disabled people.
Module 6: Education as the Practice of Freedom
module would attempt to explore the development of “special” segregated education and the subsequent challenges to this approach arising from educational issues of people with disabilities. Education continues to fight many battles of access, affordability and exclusion specifically of students with disabilities. 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 afterthought approach in that the child is simply added to the programme. Thus the child is “in but not of the class" (p. 284). The disabled child is really not a functional member of the class or an active participant in its activities. Thus, it is not the system that gets transformed: rather it is left to the disabled child to adjust. Disability Studies has to engage with the format of dividing students into standard and non-standard populations. It is a ranked notion of ability that disrupts the notion of true diversity. Acts such as the RTI needs a lot of research bandwidth so that Disability Studies can conceptualize inclusive education both as an ideological commitment, as well as pedagogical issues of inclusion.
Module 4: Disability as Legal/State Problem
In this module, the focus will be on the framing of disability as part of the state’s regulation. This shall include debates on the ideas of citizenship and justice. What are the qualifications for citizenship?What is the significance of equal rights for all citizens?How do the concepts of public/private feature in the context of citizenship?What constitutes justice in the case of disabled citizenship?What challenges do disabled people face in claiming access to citizenship and justice?The current frameworks of disability and justice are strongly predicated on the idea of normalcy and of an ideal citizen who is non-disabled.This entails assumptions about certain notions of ability, autonomy, critical thinking, independent decision-making and the pathologizing of dependence. The denial of individuality of disabled people and the apparent incompatibility between citizenship and relational autonomy have posed particular problems for the status of disabled people as citizens.Although disability rights advocacy and Disability Studies have emerged, the latter will develop along a different trajectory. While the rights discourse has demanded the establishment of laws and policies that assist people with disabilities as equal and valued citizens. DS has created the intellectual and creative groundwork to reimagine disability not as a biological defect but as a valued form of human variation that exists within and is deeply affected by its social context.
Module 8: Emancipatory Research and Practice
research important for understanding disability? This course will discuss the understanding of research which is troubled by “giving voice” to the disabled and many marginalized constituencies. So what does "participation" truly mean in terms of research? The potential of Disability Studies is that instead of attempting to "give voice" we need to "facilitate voice and agency" in the theoretical frameworks and research endeavours. Research in Disability Studies 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 the lives of people with disabilities in myriad of economic, political and cultural factors. The course will point out 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 positivist and essentialist theoretical paradigm, which is oppressive for the disabled people.Several researchers note the scarcity of emancipatory research in Disability Studies. Emancipatory Research becomes a transformative endeavour unembarrassed by the label “political” and unafraid to achieve a relationship with emancipatory consciousness. Thus, rigorous research should struggle for good practices. In contrast to traditional beliefs that separate academia from activism, 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.