INTERVIEW

Professor Shilpa Das leads  the Liberal Arts Programme, and the Masters in Design, Film, and Video, at the National Institute of Design, Ahmedabad. Alumna of Jawaharlal Nehru University and Tata Institute of Social Sciences, India, Shilpa brings thirty one years of expertise spanning education, publishing, and the voluntary sectors. She is also Vice President, Indian Disability Studies Collective. 

Shilpa has collaborated internationally, supported by grants and partnerships with institutions including Swinburne University, Melbourne;  Central St Martins, London; Tokyo University of the Arts and Lucerne School of Art and Design, Switzerland. She has served on advisory boards for the Social Design Network, Bill & Melinda Gates Foundation, Design for Good, The Missing Billion, and others for projects on disability, women's reproductive health and social development. Through her work, Shilpa continues to shape and advance inclusive and interdisciplinary design worldwide.She has published widely on Disability Studies. Her forthcoming book with Springer, jointly edited with Someshwar Sati and Banibrata Mahanta, titled, "Narrative Universes of Disability" will be published in a few months.  

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1. Considering your unique position as a disabled Indian woman how has your insider perspective shaped your understanding of disability and gender, and what specific insights have you gained through this embedded approach that might differ from an outsider's perspective?

 

Response: As a disabled Indian woman conducting research on disability, talking to several disabled women, reflecting and writing on their experiences, and participating in that which is observed, I straddle the terrain mainly as an insider within the culture and thus, drive embedded studies. If each of us is the aggregate of our own experiences, then, I believe, we each have the prerogative to interpret our existence in our own ways. This study is as much about my own life experiences, about the existential realities of a physical impairment and the accompanying disability as it is about those of others. Conducting research from the ‘inside’ is as important as working from the outside in understanding and articulating life experiences; the act of aligning oneself with others, an empowering act in itself. A high degree of reflexivity is hence, inherent as also the political implications of my location as researcher.  It is important for disabled women themselves to ‘come out’ in order for them to feel they are part of a collective or a political constituency and to shun a sense of isolation. This research aims at capturing the experiences of women occupying such liminal spaces in their own voices. It takes as given that the positionality or positional perspective of disabled women is a vantage point from where values are interpreted and constructed i.e. disability and gender as a political position.

2. In what ways do you find the ‘female’ experience of disability different from the male experience?

 

Response: That's a really insightful question. Ours is as we know, a gender divided society that operates both at the level of culture (involving ideologies and the cultural construction of gender differences) and structure (through gender roles, sex-gender systems, and gender relations). In every culture, gender differences are accorded primacy and are key to the way how, as Sandra Harding pointed out, ‘individuals identify themselves as persons, organise social relations, and symbolize meaningful natural and social processes.’ Gender not only determines the status and role of women and men, but also determines relationships between men and women. Noted development economist, Bina Agarwal, terms this as ‘gender relations’ it refers to ‘the relations of power between women and men which are revealed in a range of practices, ideas, representations, including the division of labour, roles, and resources between women and men, and the ascribing to them of different abilities, attitudes, desires, personality traits, behavioural patterns and so on. Gender relations are both constituted by and help constitute these practices and ideologies in interaction with other structures of social hierarchy such as class, caste and race. They may be seen as largely socially constructed (rather than biologically determined), and as variable over time and place.’

India's societal structure, deeply rooted in patriarchy, creates various forms of unequal relationships between men and women. When we study gender in India, it's clear that factors like social class, religion, caste, age, and where someone lives all play a role in shaping these inequalities. The way society is organized shows how women are often seen as subordinate and the specific ways this happens. How gender roles develop is heavily influenced by traditional family structures, the hierarchy of the caste system, and historical foreign rule. Dominant ideas about women are created and maintained through symbols, customs, and religious beliefs within India's highly structured society. What it means to be a man or a woman is constructed through beliefs, ideas, behaviours, and how these relate to social class and the economy. These gender roles become ingrained in both men and women, with the family playing a central role in teaching and enforcing these rules about how men and women should behave.

When we delve into the 'female' experience of disability in India, we see some really significant divergences from the 'male' experience, often rooted in the deeply entrenched cultural and societal structures here.

Firstly, disability intersects with pre-existing gender inequalities in India in quite a profound way. It's not just about being disabled; it's about being a woman with a disability in a context where women already face considerable social devaluation. We are aware how traditional patriarchal views can see daughters as burdens. Now, when you add disability to that, it unfortunately amplifies this negative perception, sometimes to a shocking degree, with historical accounts even suggesting that families might view a disabled daughter's existence as deeply undesirable. This initial societal positioning is a fundamental difference in the lived experience right from birth, something a disabled man might not encounter in the same way.  

Secondly, the social implications of disability differ significantly for women. We see limited marriage prospects for disabled women and the potential for social exclusion. In a society where marriage often holds significant social capital and security for women, disability can create a major barrier, leading to isolation and further marginalization. Disabled women perceived as imperfect and flawed may be rejected in the traditional arranged marriage scenario. This is because they are considered to be unfit to fulfil the traditional roles of Indian women— of wife, homemaker, and mother—as not conforming to the stereotypes of beauty and femininity in terms of appearance and perceived negatively as being in need of physical assistance themselves. Thus, disabled women often find themselves accepting the cultural dictum that marriage and motherhood, which are seen to bestow a sense of purpose and identity to a woman’s life, are forbidden aspirations. Our system of arranged marriages and dowry is oppressive because in the case of disabled girls, it means that parents would have to give extra dowry, if the girl were to marry a non-disabled boy. But, as it happens, disabled men and boys would rather marry a girl without disability than a disabled girl, thus further de-valuing them. So there may be rejection from both non-disabled and disabled men. While disabled men also face challenges in marriage, the social pressures and expectations surrounding marriage for women often make this a uniquely gendered experience of disability. NSS data (2002) indicate that 47% of disabled men and 39% of disabled women remain unmarried, highlighting a statistical disparity. Other studies suggest that only one in six disabled women in India is likely to marry.  

Even when the parents do manage to get the girls married after giving a lot of dowry to ‘compensate for the defective status’, the stigma of disability always looms large and many women report being ignored, ill-treated, subjected to physical and mental harassment at home or abandoned. Studies indicate that disabled women are usually married to other disabled men, widowers, much older men, a man who cannot find a spouse for some reason such as poverty, low income, etc. Census data also indicate that although only 8% of disabled men are widowed, divorced, or separated, as compared to 31% women. Disabled women are also more likely to be abandoned, divorced or have their marriage annulled than non-disabled women because of prevailing views that they do not have the stamina or fitness levels to do their domestic chores, to care well for their families and especially children, and cannot contribute to the family’s earnings. Considering that marriage is perceived as a valued traditional role for women, disabled women quietly suffer the negative emotional trauma that follows the break up or loss of long-term relationships. In fact, many disabled women repudiate marriage or traditional female roles because their avenues to traditional roles are restricted.

Third, when we look at education, the disparities become quite apparent. Disabled women often face greater barriers to accessing education compared to disabled men. Studies indicate a clear gender gap in literacy and school enrollment. For instance, a study from 2015 noted that a staggering 95% of disabled children (with girls constituting 40% of this population) did not receive any schooling or special education. Some studies reveal that disabled girls are often not sent to school at all. Even among the disabled child population, girls constitute a mere 0.47%, indicating a lower number of disabled girls compared to boys. By the age of 14 years, almost 68% of disabled girls are not enrolled in schools. Only about 38% of disabled women are literate, compared to 43% of disabled men. In rural Gujarat, where 90% of the disabled population lives, only 1% of girls go to school, while 67% of disabled men do. Alarmingly, only 0.5% of disabled women in India manage to attain a college education. A major reason for the low educational attainment among disabled girls is the high dropout rate after puberty. This is often due to safety concerns while traveling to distant schools, the need to help with household chores, or the pressure to engage in income-generating activities. Ultimately, disabled girls and women are significantly underrepresented in education because of their systematic exclusion.

This inequality in education directly translates into disparities in employment prospects. Disabled women face significant disadvantages in the job market. With lower educational attainment, they often have fewer qualifications, and employers may hold discriminatory views about their capabilities. The ILO states that disabled women are at an increased risk of being poorer and more socially isolated than either disabled men or non-disabled women, which indirectly points to the employment disadvantage. When you add variables such as caste into the gender and disability mix, we realise how this significantly impacts the access and opportunities available to Dalit women with disabilities in the Indian economy, highlighting an employment disparity.  

There are, oftentimes, multiple layers of marginalization. For women with disabilities, their experience isn't just shaped by ableism and sexism in isolation. Factors like caste and religion further complicate their experiences, creating a unique intersectional disadvantage that might not be the same for men with disabilities. Caste and class act as "plural identity markers" that render the experience of disability more complex for women, often leading to increased vulnerability, poorer health outcomes, and limited access to resources. For instance, Dalit women with disabilities often face compounded discrimination due to their caste and gender, in addition to their disability.  

Other issues faced by disabled women, such as reproductive health concerns, experiences of violence and abuse, also have a distinct gendered dimension that needs to be addressed specifically. This recognition itself underscores the unique "female" experience of disability that necessitates a different analytical framework compared to the "male" experience.  

South Asian societies are deeply rooted in patriarchal control over women’s labour, fertility and sexuality, oppression within the family and in society at large. Women are disenfranchised with limited rights, lack of access to resources, and lack of inheritance rights. Gender inequalities also result from pre-existing, ideologically embedded, gendered social norms and social perceptions that are constantly reformulated. Because disabled girls are often unseen by the wider world, governments and social movements tend to ignore them, as if they don't exist. When they are made invisible, they are not considered to have the same rights as others.

While both disabled men and women face ableism, for women, it's like navigating a double whammy. They're dealing with the stigma and barriers associated with disability, but also with the pre-existing biases and inequalities simply because they are women in Indian society. This creates a very different and often more challenging reality. The societal lens through which their disability is viewed is often filtered through patriarchal norms, leading to unique forms of exclusion and devaluation that their male counterparts might not face to the same extent.

 

Are there any small incidents and anecdotes from your personal life that you would like to share with our readers?

 

Response: I've also experienced discrimination in various aspects of my life. For instance, when I interviewed for a college lecturer position in my late twenties, the focus shifted to my locomotor disability. I was questioned about how I would navigate the building and manage my teaching duties. I had to emphasize that my disability had never hindered my abilities and that physical access to the building was a solvable issue. Furthermore, I clarified that my disability affected my mobility, not my intellectual capacity to teach.

3. With the beginning of twenty first century, how do you see the position of women with disabilities evolving in the Indian society? Do you see any major changes underway?
 

Response: In my own research in Gujarat I have seen increasingly over the decades how disabled girls and their families gradually emerge from a phase of self-pity to apply their own problem-solving approach to deal with the new circumstances that disability brings. One of the first measures is ways to improve their mobility by working closely with prostheses makers and doctors. They cultivate interests and creative activities turning them from pastimes to those with a deeper cathartic-healing function and hence, are seriously pursued. Secondly, adapting daily routine becomes an important step for those disabled later in life. They learn how to navigate their way through their day to day lives, and devise strategies to handle and manage potential hurdles. 

 

Several discursive strategies are used by disabled women to counter the stereotypical ascriptions of disability and to resist becoming the objects of pity. Through these strategies, they consciously question existing societal structures, resist the oppression therein and more importantly, actively rethink gendered disabled identities. The features of their own middle-class families propel them towards acquiring higher education or planning their careers seeking to achieve the goal of securing their financial status. Paradoxically, this is a tacit subscription to the widespread belief in the non-disabled world that the options of marriage and motherhood that are available to all non-disabled women are not meant for them.  The role of parents as being open minded in the face of patriarchal modes of thought needs to be underscored. Fathers, the prime decision makers in the patriarchal family support their daughters in terms of the decisions they take in terms of their education, careers and marriage. In this study, especially the Muslim fathers are seen to support their disabled daughters to cross traditional socio-cultural thresholds and defy sex-role stereotypes to chart different life trajectories for themselves. Fathers emerge undoubtedly as the biggest affirming influence. Disabled girls wrest the agency to achieve their goals, resist and discard the stigmatised identities attributed by society and the definition of disability as disaster, and stride confidently towards a self-reliant future.

 

From my own research here in Gujarat, I find that in the journey towards resisting their stigmatised identities, education is seen by disabled girls and their families as the first stepping stone towards an improved future.  Schooling of disabled daughters is perceived as the first positive step towards the goal of self-reliance, as a way of productively engaging them, as a way to achieve greater social equity and autonomy, and as the prime means to reduce the stigma of disability. Interestingly, I have seen parents in Gujarat perceive lack of education and not the impairment as causing harm to the daughters’ psychosocial development. In fact, in some communities, their education is an outcome of their impairment; non-disabled girls may not be permitted to be educated as much. The value of further studies is upheld even by those disabled girls who acquired a disability later in life who ensured they acquired new or more advanced degrees or training in a specific area in order to follow a new vocation in life.

Broadly speaking, the affirmative experiences in terms of human relations at school and college mentioned by disabled girls specifically highlight positive, encouraging, caring and supportive teachers and school administration who helped them move towards greater self-reliance and confidence in terms of negotiating day to day activities and difficult aspects of the school building, as well as developing competence in studies and co-curricular activities. Positive attitudes of teachers towards disabled students lead to their peer acceptance and social integration. Scholastic and co-curricular achievement and progress of disabled girls also make for greater peer acceptance, mark them in a more profound way than their disability ever did, significantly negating their disabled identity and providing parents a way to counteract the ‘doomsday’ reactions of other people to the daughter’s disability. These small successes aggregate to create a favourable approach towards the daughter’s education in parents’ minds and lead to an enhanced self-concept for the girls themselves.

A career is a natural outcome of their education and empowers disabled women in many ways even though they face negative experiences in their working life.  A career is considered as a source of empowerment and a prime means to counter the stigma of disability as dependency, passivity and as a burden. Some participants, especially those disabled later in life, look at work as a way of occupying themselves and dealing with mental turmoil. They begin to realize that they would have to work in order to sustain themselves and to become physically and mentally independent from their brothers’ or fathers’ assistance and support. The capability to be financially independent and the self-sufficiency of employment allow for a significant legitimisation of a disabled woman’s status. Work is perceived as preventing them from being burdens on their families, enabling the forging of identities, and conferring a status in society. Significantly, the social interaction afforded by work is perceived as vital to one’s personality development, specifically in terms of building one’s confidence, wearing off of reserve and affirmation of the power of people-skills especially in terms of interaction with men. Working in an organisation hones disabled womens’ decision making power and provides opportunities to exercise the same and they begin to perceive their life as a move towards self-reliance, the progressive evolution of their worldview and even the development of leadership skills.

 

I also see another kind of resistance in the very act and manner of narrating their life histories, the key words of these narratives being adjustment, acceptance, management, struggle, resistance, freedom, and independence. All the narratives are simultaneous ways of overtly constructing, resisting and even subverting their disability status. The life histories of these women as told by them contest in many ways prevalent views of disabled women.

4. Do you see feminism in India addressing the issues of women with disabilities?

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Response: In India, the feminist movement has often overlooked disabled women, treating them as an invisible group. While the Indian women's movement has explored differences among women based on caste, class, and location, it has largely ignored the intricate ways disability and gender intersect. As a result, the specific challenges and oppression faced by disabled women haven't been adequately addressed, leading to limited political action in this area. This lack of attention has been partly attributed to the dominance of a medical understanding of disability, which treats it as a natural condition rather than a social issue.

The Indian women's movement has focused more on broad social, economic, and political issues, sometimes neglecting the personal and psychological experiences of disabled women. This focus has inadvertently aligned the women's movement with medical professionals, mental health systems, government policies, and the pharmaceutical industry. Bhargavi Davar wrote about this almost ten years ago.

The exclusion of disabled women from the feminist movement has also been linked to their limited involvement, possibly due to the overwhelming daily challenges they face. Some argue that even the simple act of surviving can be a form of resistance for disabled women. Often lacking support groups to challenge negative societal views and facing marginalization within both feminist and disability movements, disabled women frequently confront gendered oppression alone. Anita Ghai foregrounded this issue almost two decades ago.

Even within organizations specifically for disabled women, the focus tends to be on those with physical or visual disabilities, often neglecting the needs of women with intellectual disabilities and mental health conditions. While political and legal rights are important, they don't always fully address the diverse and specific needs of all disabled women.

With respect to scholarly research though, the emergence of feminist disability perspectives in India at the turn of the new millennium marked a turning point, challenging the male-centric focus of traditional disability studies and activism. Many scholars highlighted the unique challenges faced by women with disabilities, including reproductive health concerns, experiences of violence and abuse, and limited access to education and employment opportunities among other issues leading to significant insights.

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5. Lastly, how do you see Disability Studies evolving and what would be your personal take on ways for ‘changing Mindsets’?

 

Response: Disability Studies is developing as an interdisciplinary and transdisciplinary field, drawing from humanities, social sciences, and cultural studies to explore disability. This field critically examines the concepts, categories, and various dimensions of disability, including the social, cultural, philosophical, historical, political, and social policy aspects, as well as the experiences of disabled people. It is challenging conventional explanations of disability to understand their origins and potential future evolution. This academic area has grown from the disability rights movements of the 1960s and 1970s, which advocated for civil rights, access, and inclusion. These movements and the subsequent legal and political developments have encouraged scholars to analyse disability through various theoretical and intellectual lenses.  

Within academia, Disability Studies programs and publications have gradually increased globally including in India, with scholars challenging traditional views on disability and disrupting the notion of ability. This field critiques the idea of "compulsory able-bodiedness" and the societal privileging of able-bodiedness, which often leads to the marginalization and oppression of disabled people. Disability Studies also analyses how "normalcy" is constructed and enforced, contributing to social inequity and intolerance. It opposes the medical model of disability, which views disability as an individual deficit to be cured, and instead, it promotes the social model, which emphasizes the role of social barriers in creating disability.  

Disability Studies has evolved to include critical perspectives, such as feminist disability studies, which examines the intersection of gender and disability, and critical ableism studies, which analyzes ableism within societal structures. The field also encompasses queer disability studies, posthumanist disability studies, and global perspectives, recognizing the diversity of disability experiences.  

Further, Disability Studies is becoming more global, with scholars from various regions, including the Global South, contributing to the field and challenging Western-centric perspectives.  

You also asked me about my personal take on ways for ‘changing mindsets.’ Changing mindsets about disability necessitates a comprehensive strategy that confronts ableism on multiple fronts. A fundamental element is increasing education and awareness to dispel the myths and stereotypes surrounding disability, which should be integrated into education from an early age and reinforced throughout life with accurate portrayals of disability in media, literature, and educational resources. It is also imperative to carefully consider the language we employ, avoiding ableist terminology and adopting respectful and inclusive communication, acknowledging the phenomenon of the "euphemism treadmill" and actively breaking the cycle of derogatory language.  

Promoting the social model of disability is crucial, as it posits that disability is largely a social construct resulting from societal barriers, rather than an individual deficit, thereby shifting the emphasis from "fixing" individuals to fostering inclusive environments. Creating opportunities for the full participation of disabled people in society is essential, which includes ensuring accessibility in education, employment, healthcare, and public spaces, as well as empowering disabled people to advocate for their rights and ensuring their voices are heard.  

Moreover, it is important to embrace the diversity of human embodiment, moving away from the notion of a single "normal" way of being. Disability should be acknowledged as a natural facet of the human experience, and differences should be celebrated rather than stigmatized. An intersectional approach is also vital, recognizing that disability intersects with other identities, and efforts to transform mindsets must address these intersecting forms of oppression.  

Ultimately, changing mindsets requires self-reflection and a readiness to challenge our own biases and assumptions about disability. By doing all this, we move towards a more inclusive and equitable society. By integrating academic inquiry with activism and a commitment to social justice, we can strive towards a world where disability is no longer a source of marginalization.