Shishur Sevay: Promoting Civic Engagement and Belonging for Disabled Young Women in India

Abstract

This is a case study of Shishur Sevay, an inclusive home and school for orphaned young women in Kolkata, West Bengal presented through the lens of disability rights and civic engagement from two disabled Desi scholars. It contrasts practices in the organization with disability policies in India and examines how emphasis on full inclusion contributes to the young women’s experiences of civic engagement. Data were collected through semi-structured interviews with students, teachers, childcare workers, administrators, and board members (n = 32). Secondary artifacts (i.e. news articles, blogs) were used to inform the study. Transcripts were analyzed using structural and in vivo codes with applications of Bhattacharya’s Par/Des(i) framework. Fostering community involvement has been key to a shared value of civic engagement – as seen by the organization’s challenging of institutional apathy and segregation, working towards equal rights in the home and providing opportunities for leisure for all.

Keywords:

• Disability
• inclusion
• India
• qualitative
• history

Introduction

What is it like to live in India with a disability? This is a question that has plagued me most of my life, as an international disabled Indian adoptee. This is also a question that I have tried to answer based on multiple trips back to India, specifically Kolkata, the place of my birth. Yet, I know that every single time I go, I am easily spotted as the Westerner. Deep down, I also know that many affordances provided to me such as access to education, employment and healthcare due to laws in the United States have made me, “one of the lucky ones.” I have written previously about coming face-to-face with what life could have been on my very first trip back to India (Forber-Pratt, 2021), but this paper seeks to take you on a journey of discovering a unique school and home for girls with and without disabilities in Kolkata, as well as the relationship with (then) disabled Indian doctoral student, now post-doc, Tanushree, as we jointly looked at these data and paint the picture for you. In this paper, we will go back and forth with my words appearing in Calibri font, her words in Arial italics, and our collective voice appearing as regular Times New Roman font. This call and response format helps to paint the picture of the context in India for disabled persons from our own unique viewpoints and our collective voice.

The history books tell us that the 2006 United Nations Convention on the Rights of Persons with Disabilities (UNCRPD; United Nations General Assembly, 2007) signaled a massive victory for the global disability rights movement and heralded a shift in definitions, treatment, and relationship of disabled¹ people with the state. The UNCRPD situates itself within the social model, such that disability is seen as the interaction between bodily impairments with societal barriers.

Disability policy in India seems to be shifting from care and “curing” disability to removing the social barriers that impede quality of life (Mehrotra, 2011). In 1995, the Persons with Disabilities (Equal Opportunities, Protection of Rights, and Full Participation) Act included provisions for eliminating structural and social barriers, fighting discrimination, and promoting inclusion. India reaffirmed this position in 2007 when it ratified the UNCRPD, signaling an international commitment to disability rights. The Rights of Persons with Disabilities Act (RPWD; 2016), passed in 2016, aligns India’s disability laws with the ideals of the UNCRPD. In addition to increasing the number of officially recognized disabilities, the legislation reflects a social approach to disability (Narayan & John 2017). However, aspects of the law retain a medical definition of definition (Jagani, 2017) complicating the idea of a progressive, linear movement towards disability rights and disability justice.

I find all of this interesting, as nearly every trip I have taken back to India was met with significant societal and physical barriers. I am left wondering: how have these policies and laws actually been received for those living day in and day out with disabilities in India? Were these momentous occasions celebrated and revered by the Indian disabled community? Or, are these markers in history that only those within the privileged elite of educated disabled status know about?

What is it like to live in India with a disability? I grew up in India with a medical condition – just some trouble walking, a bit of pain is all, ektu koshto (Rao, 2001). I did not grow up knowing that disability is a legitimate way of understanding the world (Ghai, 2015) or a valid, collective, cultural, and political experience (Putnam, 2005). I grew up in India not wanting to be labelled disabled – I didn’t want to be seen as the weak, pitiable other. My class and caste privileges buffered my experiences of being a disabled person in India (Chaudhry, 2018). And so, I did not(?) grow up as a disabled person in India. It was only when I started my doctoral education in the United States that I met disabled people who were not just recipients of care or pity or charity – they were creators of knowledge, they were friends, they were mentors, and advisors. I had the opportunity to share disability joy and frustration with Anjali, my advisor, and had the chance to create knowledge with disabled and non-disabled members in our lab. It was reading and listening to the transcripts from Shishur Sevay and visiting the home that had me question the entanglements of privilege and subjugation (Bhattacharya,2019) with respect to my own experiences as a disabled person in the homeland. In many ways, my awakening around disability identity, rights, and justice happened in the United States. This is true for several disability scholars and activists in India who have tirelessly advocated for disability rights in India (Bhambani, 2018; Chander, 2016).

Yet, state structures created to promote and ensure the rights of disabled people often violate these rights (Meekosha & Soldatic 2011). Sapra (2016) highlights the “institutional apathy” (p. 161) experienced by disabled people, especially those who experience intersecting forms of disadvantage, including gender, class, location, and education. A study by Johnstone and colleagues (2019) showed that disability organizations in India often find themselves powerless in a context of poor implementation of disability legislation.

I am still not considered legally disabled in India. I have been too afraid (and perhaps also ensconced in my privilege) to apply for a disability certificate. The piece of paper that will “prove” my status and allow me to pursue rights and entitlements as a disabled citizen (Bhaware, 2020). What if the State “informs(s) (me) in writing that (I have) no specified disability? (The Rights of Persons with Disabilities Act, 2016, p. 18). How do we engage with the rhetoric of increased focus on legal and social rights of disabled people in India? There are concerns regarding the feasibility of fulfilling the commitments enshrined within the law, especially when so many disabled people struggle with being recognized by the state as disabled. Provisions pertaining to involvement in family and community life, leisure and recreation, access to assistive resources, and rehabilitation are discussed more broadly (Aitchison, 2003; Devine & Lashua, 2002; Hiranandani et al., 2014), but have not received much attention despite their important roles in promoting the principle of full, effective participation and inclusion in society for disabled people. Such concerns require engagement with the lived experiences of disabled people in India, mired in the complex realities of caste, class, gender and how it affects their relationship with disability rights and the state (Mehrotra, 2011). The struggle for me then is to neither romanticize nor condemn home from my location in the North. To not diminish what home has to offer, yet to hold space for the intersections of oppressions that constitute and construct disability at home. And at the same time, to not read India from my own “colonised elite” standpoint (Smith 1999).

On one of my early trips back to India, I spent time with Dr. Hahn (pseudonym), the founder of Shishur Sevay. More about how this unfolded will be shared later. But, what struck me was the novelty and amazingness of what she had built–centering the needs and rights of young orphaned women with and without disabilities in urban India. She created a space and a home and environment where these young women are allowed to be educated and be seen as full, active members of their community. This made me realize, if they can do this in the middle of Kolkata, this counter-narrative needed to be shared with the world – as it embodies the progressive, rights-driven and inclusive atmosphere the policies set forth as the ideal. This exemplar organization negotiates complexities of disability to move towards full inclusion and participation of individuals with disabilities while promoting the rights of disabled people within home, school, and the wider community. The home has been viewed as a model for inclusion both in terms of structures and processes within the Indian disability context (Forber-Pratt & Lyew, 2019).

Guiding frameworks

Two theoretical frameworks were used to guide this work. First, from this larger study, a continuum of inclusion was proposed (Forber-Pratt & Lyew, 2019) which showcases how inclusion can vary based on differing levels of integration, cultural norms and beliefs around disability and local policies. The continuum ranges from inclusion as forced compliance or physical sharing of space of persons with and without disabilities but lacks in true programmatic inclusion on the one end to inclusion being embraced as the norm and seen as a catalyst for growth on the more progressive end.

This framework is important in the context of this study because it is a culturally responsive way to describe what level of inclusion was seen in this particular case, knowing that this would likely not meet colonized or Western views of inclusion. The second main theoretical framework is a deeper layer to that point and adds empirical evidence to support and expand on Bhattacharya’s Par/Des(i) framework which is described as a de/colonizing ontoepistemic framework that “highlights the movement of transnationals between national discursive subject positions, internalized colonizing perspectives, and resistance to the colonizing materiality of western superiority (Bhattacharya, 2009).” (Bhattacharya, 2019, p. 183). The tenets of this framework are described below and revisited after the presentation of the empirical data.

Methods

An intrinsic case study design (Stake, 1995, 2008) was used to examine Shishur Sevay. An intrinsic case study is the study of a case (e.g. person, specific group, occupation, department, and organization) where the case itself is of primary interest in the exploration. The exploration is driven by a desire to know more about the uniqueness of the particular case. Given that Shishur Sevay is an inclusive home and school in the middle of Kolkata, India, in its own right, this was intriguing in a place where inclusion and progressive rights for persons with disabilities are often undermined. The heart of this method lies in the “researcher at least temporarily subordinates other curiosities so that the stories of those “living the case” will be teased out” (Stake, 2008, p. 136). The purpose is not to come to understand some abstract construct, but rather to explore the uniqueness of one particular case, in this paper, of Shishur Sevay. While a part of a larger case study, the research questions that guided this portion were: (1) How does Shishur Sevay promote and expand civic engagement for the young women who live there? And (2) in what ways do the lived experiences of these young disabled women map onto Bhattacharya’s Par/Des(i) framework (2019)? (Table 1).

Table 1. Bhattacharya’s par/des(i) framework tenets (2019).

Tenet	Meaning
1. Re/membering Desh	The nostalgia, romanticizing, and memories of a static Desh (homeland) that signify simultaneously belonging and isolation, intersected with shifting privileges
2. Par/Des(i): The More Desirable Other?	The interplay of Par, Desi, Pardes, Desh, and Pardesi lenses and hierarchies that inform the ways in which we resist, accommodate, and liberate ourselves from various networked social structures of oppression such as colonialism, patriarchy, homophobia, transphobia, casteism, colorism, ableism, classism, Islamophobia, and much more
3. Home Is Permanently Deferred	The continuously reconceptualizing and reconciling our relationships with home.
4. Beloved and Problematic Communities	The work we have done to bring awareness to our internalization of oppression—including but not limited to colonization, patriarchy, homophobia, and transphobia, ableism, casteism, classism, Islamophobia, and so on—and how much freedom we have afforded ourselves to imagine alternate and transformative realities and futures.
5. Commodification of Multiculturalism and Diversity	The vigorous interrogation of the commodification of multiculturalism and diversity, which are too often limited to tokenization or identity politics.
6. Communal Healing Is Our Priority	The hybridity, liminality, and shuttling with opportunities for our communities to meditate on healing while being responsive to our diversity, dialoguing across differences, crafting possibilities of solidarity and common agendas.

Our desi backgrounds

Author 1

I was the lead researcher and collected all data in India and I self-identify as a transnational Indian adoptee and I use a wheelchair due to a physical disability. Like many adoptees, I have a complicated relationship with my Indian identity. Though, the overlay of my disability has added further layers to this already complicated relationship. While I was born in Calcutta, I was sent on an airplane at age 2.5 months to live a life in the United States. My first time returning to the country of my birth was in 2006, as a recent college graduate. I knew ever since then that I wanted a tattoo (that I now have) that reaffirmed my identity with India, specifically from Calcutta and Bengali culture.

Being in India, I was attracted to the richness of the colors and certain patterns that are specific to Bengali culture. Until I visited Calcutta, I did not truly identify with being Indian (Forber-Pratt, 2020a). I believe this is one of the challenges adoptees who grow up with White parents face—it is hard to gain a full appreciation of the culture you come from when you do not experience it until later in life. It was a bit of a paradox growing up in a predominantly white community and not fitting in there to then travel to India where everybody looked the same, but still not fitting in there either. I was also jealous of my brother, also adopted from India who made the choice to move to India as he grappled with this part of his own identity too, but this felt impractical for me because of my disability (Forber-Pratt, 2021).

This tattoo, seen in Figure 1, is something that takes certain elements of Indian Bengali culture in combination with who I am today having grown up in Western culture and merges the two. I have spent time speaking with other Indian adoptees who have also planned and got tattoos. These conversations have been interesting to have because I realized that being Indian means different things to different people, but that this is one avenue where adoptees feel they can bring a part of their home country into their daily lives with meaning.

Figure 1. Author’s Tattoo.

Breaking down the design, the main piece is the turtle, done with a batik type feel. The turtle is extremely symbolic to me on multiple levels. When mother turtles lay their eggs, she finds a safe place on a beach away from danger, lays and buries the eggs, and then the mother leaves them to hatch and go out into the world alone. Baby turtles never meet their mothers. They just go forth and conquer the big open sea on their own. On my trips to India, I learned that my story was different than how I had created it in my head. I wasn’t just an orphan from a broken poorest of the poor family; I likely was not just abandoned by a young unwed mother—which is what all of our paperwork said. I was born in a nursing home (in American terms, like a hospital) which means my birth mother had some money and was likely from middle-class or upper caste.

I have come to realize that for my birth mother to give me up was an act very similar to a mother turtle, where you want to protect and keep your babies safe, but you know you can’t be the one to guide your child along every step of the way. It was more of an act of selflessness and wanting me to have a better life than her. I am convinced that I would have contracted transverse myelitis (which led to my paralysis) regardless of whether I was adopted and, in the U.S., or not. The harsh reality is, had I gotten sick in Calcutta, I would have died. I believe this to be true because the recipe was: lack of adequate medical care, being a powerless orphan, and sudden onset of a rare neurological condition. This would not have ended well for me. And if, by some miracle and grace of God I had survived in India, I would have been shunned and kept hidden and separate from society without being allowed any formal education, participation in society or anything. I met the unadopted children who were left from my orphanage, they were the ones with disabilities kept locked away from society on an upper floor of an old building with no windows, no elevator, no access to anything, and ironically, behind the wall was a private school.

The other dual meaning is the similar mentality of my mom, my adoptive mother. She raised me to be independent and to chase my own dreams, but it was and is very much understood that you were and are expected to make it on your own. There is also the same element of wanting me to have a better life than her. She provided for us, cared for us, and allowed us to spread our own wings and fly, something she, to this day, in many ways, she never done for herself. I know she is proud, and she loves me, even if she doesn’t always know how to show that. And the truth is, I am grateful that through her selflessness and trust in me, that I have become who I am today. I’m also grateful for my birth mother who also contributed to making me into the independent fighter I am. My birth mother loved me before I was born, and both wanted what was best for me. The stories are intertwined, contributing to my selection of the turtle.

The word on the bottom written in Bengali is jibon which is the word for “life.” The meaning of that comes from the stories shared above, I have created my life now and the word is a reminder of who I am and where I came from. The sun that is the backdrop is not a complete circle but is also related to the concept of the circle of life. It’s not a complete circle because I believe that there will always be mistakes made and challenges along the way which means making it perfectly round would be fake, and life is ongoing. What looks like the paisley-leaves are actually a mango pattern that is very common in Calcutta. The mango signifies a guard against evil and misfortune. This relates to the acts of selflessness that have contributed to my life being what it is today.

The colors were also picked intentionally. Red signifies charitable, brave and protective. Burnt orange symbolizes purity, quest for light and is also worn by those in the warrior caste. Yellow is the color of knowledge and learning and relates to mental development and inner peace. Green symbolizes peace and happiness and is meant to stabilize the mind. Blue, the most prominent color in the design, is the color of nature and is worn by the deity who has qualities of bravery, determination, the ability to deal with difficult situations and who protects humanity. These characteristics are reminiscent of my core values and beliefs of fairness, challenge, and integrity. As an infant I was placed in a potentially unfair situation being abandoned, and throughout my life there have been many other occasions where this also happened but knowing that I have the strength and courage to face adversity and to live life means a lot to me.

While it may seem odd to frame my positionality statement in the context of my tattoo, the additional layer is that there is one person who has known me longer than anyone in this world, and that is the adoptive daughter of the founder of Shishur Sevay, the organization this study was all about. Her daughter was born a day before me and we were in the orphanage together. Our adoptive mothers in the United States were longtime friends, going through this adoptive journey together, and once we were both in the United States, we had many childhood birthday parties together. After her own life journey and stories, she answered a calling, to return to India and create and build Shishur Sevay. In 2006 when I first went to India, she was already living there, but Shishur Sevay was merely a shell of an idea.

Thus, I did have a previous friendship with the lead administrator at Shishur Sevay. I also knew a few of the students, teachers and administrators who were interviewed, as our paths had crossed on various trips to India, though never for research. Therefore, coming into this project, I was sensitive to the fact that some individuals may have perceived me as a friend and therefore may have been reluctant to share their true feelings however, I found the opposite was true because the young women were able to see me as a trustworthy ally. I did explain as part of the consent process and background about the study and its purpose that any existing friendships would not be jeopardized because of this study and reminded them that they could choose not to answer any questions.

Author 2

An often-told story in my house is about my first visit to my father’s desh, a village around 90 miles from Kolkata in West Bengal. We came to attend a pujo (prayer meeting) for my disability. I was ambushed by the hordes of visitors who would trickle in each day to see the daughter of the son of the soil who had escaped to the city. I left Delhi for this trip as a four-year-old child who spoke Hindi, a bit of English, a bit of Bangla, a touch of Punjabi. In the village, I did not speak a single word. When we returned to Delhi, all I could speak was Bangla.

My newfound Bangla proficiency was an encouraging sign to my father. I could be the good Bangali girl who could speak and write and read and sing in Bangla. Over the years, his efforts largely failed. Bangla was the language of the place that overwhelmed me. English was the language of status, of mobility, that was considered worthy of time and attention. My school(s) made sure we only spoke in English, censured us when we did not, and rewarded those, like me, who could speak the Queen’s language in the Queen’s accent. My Bangali identity is fraught and fractured. Childhood fluency in my father’s tongue gave way to Delhi-accented broken Bangla. I am a probashi audek Bangali. I am Bangali, most tellingly by my name. I was never deemed Bangali-enough by the desh. I am not of the desh. I learned my Rabrindra sangeet and Nazrul geeti. Yet, I resisted belonging.

My disability identity is an experience of gatekeeping and shame. I am yet to procure the legal paperwork that would establish my place as a disabled citizen of India. When I had the chance, I resisted. I did not want to be labelled by the language around disability, I grew up resenting– akshamata, protibondhi, viklang. These words rarely capture my experience of disability and have sought to eschew, rather than reclaim, because of the stigma of dependence attached to them (Mehrotra, 2011). I share this background because participating in this research brought together two parts of myself I never quite managed to make sense of. The words I resented were the words used to describe disability in the interviews. As a first-year doctoral student at the time, my involvement in the project set me on a journey of exploring my identities in question and as questions (Ahmed,2017).

There seemed to be a sense of expectation that as a disabled Bangali Indian woman, I would have insights and insider knowledge about this site. My first interaction with the girls and the staff at Shishur Sevay was through text. I was trying to construct understandings of disability, inclusion, and the lives of the girls through words on pages. Most pages had the first author, the participant, and the translator. The translator had not only had the difficult task of turning English into Bangla or Hindi but to translate abstract concepts into lived realities in ways that were meaningful to the researcher and the participant. In the span of an interview, the translator was traveling across continents to create a space that all the languages in these places could call their own. As an international student in the United States, I saw myself in and as the translator; trying to make sense of both India and the United States in all of the languages that I speak (Sarkar, 2024).

Yet, the insider/outsider binary was troubled when I visited Shishur Sevay in 2018. My broken probashi Bangla, my lack of familiarity with Kolkata, my accented Par/Des(i) English gave me away. My inputs and suggestions on how to communicate with the community were steeped in metaphors and concepts from the English language and my Western education. My disabled, Bangali, woman self-collided with my class, caste, Western-educated, colonized elite (Smith, 1999) researcher privileges. Recognizing this entanglement of privilege and oppression was crucial to not assume “automatic belonging” (Minai & Shroff, 2019). I am both insider and outsider – a hybridized-self building homes and communities in many places (Bhattacharya,2019). Coming to terms with this was key to suspend judgement yet retain critical reflexivity on how Shishur Sevay negotiates disability-language, relationships, rights – and how the founder navigates different strategies to ensure inclusion, home, and family for the girls (Sandoval, 2000).

Participants and data collection

I (Forber-Pratt) was originally the sole investigator on this project and was the only one involved with initial conceptualization and data collection, so this section is from my perspective. The Institutional Review Board at our institution approved the study. Consent forms were available in English and Bengali. For students under age 18, legal guardian signatures were obtained, and students were read an assent statement. Pseudonyms were used. I (Forber-Pratt) spent two weeks immersed at Shishur Sevay in December 2015. During this time, 32 participants were interviewed and/or observed: 13 students (ages 3–16), 19 adults (ages 19–73) who held various roles (childcare workers, teachers, administrative staff and board members). Teachers and administrative staff weighed in to jointly create the interview protocol and questions used for the student interviews. I first spent time with all-teacher meetings as well as one-on-one conversations with the founder prior to finalizing the staff and teacher interview protocols. Semi-structured individual interviews with adults lasted between 45 and 90 min. Semi-structured student interviews lasted approximately 20-30 minutes.

A native speaker of Bangla and Hindi, also trained in qualitative research, provided on-site translation. The native speaker and I also met prior to each interview and encouraged her to participate not just as translator but as an informed researcher living and teaching in this space too. Participants were given a choice of language for the interview. A native Bangla and Hindi speaker translated the non-English interviews to written English and re-listened to the audio to verify the translation. Another native speaker conducted back translation on 10% of each transcript for these interviews following a process outlined by Nakigozi et al. (2013). The revised transcripts served as the primary data source. Secondary artifacts (i.e. news articles, annual reports, social media posts, blogs) also informed the study. The social media posts and blogs were all written by Shishur Sevay’s founder.

Data analysis

For this study, we went through numerous iterative rounds of analyses in order to better intimately know and learn from these data. We set out, originally, to conceptualize these data as the telling of the history of Shishur Sevay, in more of a narrative presentation. We were met with resistance based on that approach and pushed to more of a positivist construction and framing of these data. While there were issues with that approach too, the biggest was that we had moved so far away from the data and the stories themselves that the paper felt almost non-recognizable.

At this point, I abandoned this approach and tabled it. Not long after that, I was fortunate to have Author 2 as a new doctoral student working with me, and her passion for work on disability in India was closely aligned, and her knowledge and expertise of the culture and languages was something that I did not have in my own skill set. Initially, Author 2 was trying to make sense of the transcripts and the coding processes and memos that I had done, but there was a definitive tipping point when she asked for access instead to the raw audio files. Furthermore, as she shared above, we were able to arrange for her to go and see and spend some time at Shishur Sevay when she was visiting home. These pieces felt more important in this iterative process than any formal coding structure or approach.

The final piece was for us to learn about and wrestle with Bhattacharya’s Par/Des(i) framework (2019). Importantly, this came after data collection that occurred in December 2015 and many additional iterative rounds, but this felt like yet another critical missing link to aid in the translation of the stories from Shishur Sevay to digestible findings.

Even though data collection took place before Bhattacharya’s (2019) framework, elements of de/colonizing methodological turns were present in the collection, analysis, and writing process. For example, relating to giving up your will to know and creating new methodologies and strategies of inquiry (Bhattacharya, 2019), throughout data collection I ensured that all participants had a voice and a way to participate, despite any disability (Forber-Pratt, 2020b). Methodologically, to devise a way to emphasize Gitka’s voice despite being considered nonspeaking was a way to push against cultural ableism and challenging common methodological norms. Additionally, the prior students who worked with me on this project had not had the full immersive experience at Shishur Sevay or the opportunity to understand the importance of centering the case study participants as the primary audience.

Early on, structural codes as outlined by Saldaña (2015) were used for the first round of coding and In Vivo codes were used for the second round to capture terms used by participants themselves and feelings or emotions. As Saldaña (2015) points out, In Vivo coding helps honor and prioritize participants’ voices, particularly when participants come from marginalized or previously silenced populations. Over time, I kept adding to these codes and took liberal use of memoing, often with myself, and then in more dialogic form once Author 2 became involved in the project. I also regularly had informal member check conversations with the leader and other teachers and administrators at Shishur Sevay to assess if we were on the right track and accurately honoring what we had learned from our data collection in the field.

Interpretation (as analysis)

In this paper, we participate in what Palmer et al. (2023) articulate as feminist collective interpretations. The ways in which we interpret and analyze the data generated from the case study are personal to our unique social locations yet share a mutuality between the authors and the participants. As we sit with the data and ourselves, we consider our ongoing relationship with each other as we make sense of how we both experience disability in desh and how we make sense of the experiences of the girls at Shishur Sevay – stemming from these diverse experiences of occupying and negotiating female, disabled, desi selves. The messiness in this work (Palmer et al., 2023) is reflected in the way this piece is formatted – moving between and across traditional styles of journal articles and our own reflections and positioning.

Gaulpo: Stories from our results

Shishur Sevay operates with disability rights as their foundation by challenging institutional apathy and segregation, working towards equal rights in the home and the family, and providing opportunities for leisure and civic engagement for all.

Aapotti: Challenging institutional apathy

This information came from a combination of interviews with the founder and through the reading of secondary artifacts described above. Founded by Dr. Miriam Hahn² in 2006, Shishur Sevay is an inclusive living and, as of 2013, learning facility for orphaned young women with and without disabilities in Kolkata, West Bengal. Dr. Hahn decided to establish Shishur Sevay due to her experiences in India—adopting her daughter in 1984, visiting in 2000 to better understand the country, and volunteering at orphanages and learning about the Indian non-profit community. Throughout, Dr. Hahn wondered what happened to children who were not adopted.

She learned that many orphanages and non-profit organizations did not take in orphans who had no known living family connections or extended community ties. The Merriam-Webster dictionary defines ““orphan”” (n.d.) as “a child deprived by death of one or usually both parents.” Instead, such facilities housed and served young people who were not by definition ““orphaned”” but rather, relinquished by their parents for reasons related to social circumstances, economic background, or stigma (Csaky 2009). Wanting to provide another option, Dr. Hahn set out to create a model of inclusive and non-institutionalized care for true orphans.

In April 2006, she purchased and renovated a 900-square foot home and obtained the necessary certifications with her personal life savings. In January 2007, Dr. Hahn received clearance from the Directorate of Social Welfare to begin operations, and the first children were approved to live in Shishur Sevay by the West Bengal Child Welfare Committee (WBCWC). Initially intending to take in children from another home, while picking them up, the WBCWC asked if she would take at least one of the four disabled children they had under their care. Refusing to choose between them, she took home all four children; their disabilities ranged in type, scope, and levels of supports needed. Dr. Hahn returned to Shishur Sevay with a total of 12 young women ranging from 18 months to 11 years old. She referred to this experience as a paradigm shift, in which she and her staff had taken on not only a lifetime of care, but also the challenge of meeting their diverse needs.

Now thirteen years later, the young women take care of one another like sisters, helping each other with morning routines, chores, and meals. They play, dance, and go on field trips. Dr. Hahn and her staff create pragmatic plans for them to be interdependent and have agency over their lives. Shishur Sevay has given orphaned young women—of all abilities—the potential to flourish. Dr. Hahn and the other teachers believe that without inclusion, the young women will never be able to actualize their future potential. The main organization is called Shishur Sevay, and the school component is the Ichche Dana Learning Center. Sudesh, a teacher at Ichche Dana, explains that inclusion means every student, no matter their disability or ability, learns, lives, and eats together:

The word inclusion is everybody together…if someone is able or not able is not a criteria for being able to participate in something or not. See, for me inclusion means being part of the society, and just living your life like any other person. You should be free to do that. Living together and being the part of a society, being a part of a household, being a part of a school, that is inclusion.

Creating an inclusive environment that challenges the institutional apathy elsewhere, requires staff investment in the long-term education of the students. In return, however, there is deep dedication of the staff. For example, staff member Champa stated:

I hadn’t seen children with disabilities before. I hear [the word] disabled or I had seen one or two on the road but coming here, being with the disabled and with all these kids, I have really liked it…Now I feel like I’ll work here only. I won’t work anywhere else.

Teacher Aesha remarked on the novelty:

And I don’t know there is any other place in Calcutta who would allow me to do a thing like this. Though I have worked in other places. In inclusive schools. But uh they would always say ok you can do this separately with this child, but not in the class.

The faculty and staff at Ichche Dana rely on additional supports, like technology, to provide all students with fundamental rights such as communication. For example, Gitka has cerebral palsy and spastic quadriplegia and uses a wheelchair and was considered to be nonspeaking. She was desperate to communicate, but her fingers were too weak to manage even a special keyboard, explained Dr. Hahn on Shishur Sevay’s website:

Her toes flexed in the wrong direction when she tried to use her feet on a keyboard, and her neck couldn’t hold up her head enough for her to manage a head point. I eventually decided to purchase the Tobii Eye Tracker for Gitka; this technology allows a child who has no ability to use her hands, feet, or head to be able to use her eyes on the computer screen to communicate with others. The eye tracker offered the ability to operate windows in addition to the specialized communication software. Gitka could eventually learn to surf the web, without ever having to use her hands or fingers. This version of eye tracking, originally used for gaming was said to be less sensitive to head motion. Buying without any chance to try it felt reckless. But I kept coming back to Gitka’s current and future needs to break out of the isolation of her disabilities. Among all our girls, she is the one who tries the hardest, loves to study the most, cares about geography, history, and news, and understands humor and sarcasm.

The Tobii Eye Tracker challenges the prevailing assumption in many parts of India that disabled persons do not have a voice or that they should not be included in conversations. While this technology offers opportunities to communicate, these assistive devices should not and cannot be viewed as replacements for societal and attitudinal changes. Refer to Forber-Pratt (2020b) for details about Gitka’s voice and the methods used to interview her. Dr. Hahn and her staff are creating real learning environments for their disabled students by giving them the tools to participate in society as thriving, active civically engaged citizens of Kolkata. However, there is fear of whether or not the broader community outside of Shishur Sevay will be as embracing. Gorma, a teacher, spoke to the reality for the girls and young women in India beyond Shishur Sevay:

Inclusion is not only about school, inclusion is about the society, too. So take Gitka, for example, at Ichche Dana [name of learning center within Shishur Sevay], with her device, she understands every joke, she’s a part of our chat, so she’s one of us. But if she were to go to another school or a different classroom, she would be discriminated against.

Baadite shaubhai shaaman: Equal rights in home and family

The UNCRPD emphasizes equal rights, equal participation within the family and Article 28 requires adequate standards of living. Guaranteeing these rights can be a challenge when stigmas and beliefs about disabled people limit their opportunities to be active participants and contributors to the home and family environments. Shishur Sevay experienced several such challenges. True and full inclusion did not take place at the home overnight. Initially, the younger young women (with disabilities) slept in a different room than the older ones (without disabilities) and spent most of their time isolated among themselves. Eventually, Dr. Hahn would adjust the layout of the home’s first floor into a single and unified space for all of the children, creating an environment in which the young women with disabilities are fully included in everyday life:

We would put mats down on the floor they would sleep on the floor, and at one end of the room I kind of slept with the little ones, the ones with disabilities around me. And now we had included them. We had total inclusion. And it was kind of the older girls slept taking care of them helping them feeding them and sometimes they didn’t.

The transformation of the physical space enabled the young women to engage and spend quality time together. This has strengthened their sisterhood, with many of the young women insisting on playing together, going on trips together, and so forth. For example, Premila stated, “Together…everybody together,” in response to who she likes going to the park with. Some of the older young women have even talked about their plans to take care of their sisters in the future. Many teachers and staff have commented on their bonds. Sudesh, a teacher, noted, “The big girls always try to take care of their sisters with disabilities. They always try to assist them, play with them.” While disability continues to be taboo in many Indian families and communities, at Shishur Sevay, the culture strives to not stigmatize disability by insisting on equal rights for all the moment the girls were brought home.

Adda, mauaja, naach gaan & aaram: Opportunities for leisure & civic engagement

Article 30 of the UNCRPD states that disabled people have the right to participate in “cultural life, recreation, leisure, and sport” and Article 19 emphasizes being included in the community. Opportunities to engage are crucial to the experiences of civic engagement. At Shishur Sevay, conscious efforts have been made to provide all the young women, including those with disabilities, with opportunities to be kids, to have fun, and to learn more about their culture. Time for art, games, and entertainment is set aside. Music and dance play a large role in this endeavor. The young women have tabla (traditional drum) class twice a week, practice music almost every day, and receive dance and movement instruction three times per week. These activities are important not only because the young women get to physically participate, but also because they serve as a platform for the young women to interact with others, and to be part of a community. A statement on the Arts and Culture section of Shishur Sevay’s website describes the impact of these lessons, stating, “For the children with the most profound disabilities, the music and people enrich their daily lives, even in the times they cannot participate.”

However, problems with accessibility and logistical issues such as transportation, physical assistance, and safety, have challenged Shishur Sevay’s ability to provide the young women with meaningful, non-isolated opportunities for leisure outside of its walls. In December 2010, Dr. Hahn blogged about difficulties going on trips, even seemingly uncomplicated ones such as to the park:

Going to the park is not a simple matter. In fact, right now, there don’t seem to be any ‘simple matters’. The park close to us used to be a good place for us to go when the girls were younger. I’ve written before about the boys leering at the girls, saying things, making it ‘not pleasant’ to go there. Then, moving around with the disabled children gets harder as they get older…We no longer all fit in our car so car trips require at least one extra vehicle. If we take the children with disabilities, it’s yet another vehicle as we have to bring wheelchairs and attendants…How do you decide when everyone goes? It takes more time; it means in the end we go less often; it’s also hard to leave them behind when you know it’s only because of the disabilities and they would love the experience.

In addition to these challenges, Shishur Sevay’s efforts to provide young women with opportunities to participate in community life have also been affected by attitudinal barriers. Though perceptions have not changed overnight, the organization has sought to cultivate community acceptance and engagement by raising awareness of its mission and practices. One way Shishur Sevay has done this is by creating avenues for the young women to demonstrate their capabilities in communal spaces and encouraging others to see it in action. For example, Dr. Hahn invited leaders of the local community club to an inclusive dance performance so they could learn first-hand what goes on at Shishur Sevay. In June 2017, the young women displayed their inclusive artwork in a four-day exhibition at the Indian Council for Cultural Relations. Such events give the young women a chance to be visible and interact with members of the community and to challenge deficit-oriented views of disability.

Despite the obstacles encountered in public spaces, Shishur Sevay remains committed to giving the young women exposure to meaningful social experiences. Their excursions have ranged from simple trips to the mall and games at the arcade, to a carefully planned and heavily staffed outing to the water park. Dr. Hahn shared details from an April 2017 Facebook post:

The promised day at the Water Park, a day when the motor impaired children can splash in the water relatively free of gravity…In Kolkata I’ve come to appreciate ‘artificial’ environments where we can move easily and safely. We arrived home very late as the bus that we hired didn’t come back for us. Thirty people, seven wheelchairs, stranded outside…We used five taxis, but each is only allowed four passengers including children. We had just enough people who knew the way and could be distributed in the cabs…

While planning these activities often require an enormous amount of work, everyone at Shishur Sevay understands their importance to the young women’s well-being, sense of belonging and agency, and quality of life. Padma, an administrator, reaffirmed this, saying “…the thing is there”ll always be excuses so we just need to—they really do need to get out more.’ Such outings have also increased Shishur Sevay’s visibility to and engagement with the community. Of this, Padma, an administrator notes:

But now there are more people on the way who smile then. Part of that could be me, but part of that could be the changing perception of what actually happens here. People from the community help, having visited here…I think that has been a shift in the perception. Good things are going on. I haven’t really had a conversation about Shishur Sevay. But in terms of just reactions and responses on the road.

Aador: inclusion as care and help

Examining the perspectives of maashis, that is, the women who help feed, bathe, and care for the girls, particularly the girls with high support needs is crucial to understanding how relations of care are enacted at Shishur Sevay. The word maashi refers to maternal aunt but is used for women who care for children “like a mother,” often providing both bodily and emotional care and support. The maashis describe this as “daekha shuna kaura’’ or looking after the children. Across interviews, this daekha shuna kaura results in anando and bhaalo laaga. The maashis feel a sense of bliss and joy from this care work. Further, when asked about why they value inclusion at Shishur Sevay, the maashis suggest that the able-bodied baudo bacha, or big girls can lend a hand to help and support taking care of the koshto (Rao 2001) that their disabled sisters experience. The older sisters often help maashis interpret what the younger sisters need. On the surface, this view of inclusion and disability appears to be rooted in a charity model (Shakespeare & Watson, 2002), wherein disabled people are viewed as objects and recipients of care and service provided by non-disabled individuals and institutions. The charity model of disability is apparent in early disability legislation in India (Das & Shah, 2014).

However, inclusion at Shishur Sevay appears to be rooted in mutual relations of aador. Aador has a myriad of meanings in Bangla (Basu, 2001) but can perhaps be best understood as a combination of adoration, physical and verbal affection, and respect. Aador is how maashis often communicate with the non-verbal disabled girls at Shishur Sevay, as one maashi described, “I ask her to give me aador, and she does, and that’s how I know she understands me.”. Aador is also one of strategies that the maashis use to understand the girls’ needs when they are distressed, after water, food, and excretion. Further, the girls’ bodily needs are not flattened. Each girls’ needs are considered as a unique set of preferences and desires. The maashis have an embodied understanding of each girls’ preferences for care, “X likes to go out, Y is picky about food, but Z will eat anything, W will call you to get aador”.Here, inclusion is deeply tied to bodily needs, care, and affection. This form of care, the trial and error, this deep understanding of each child’s care preferences, might be likened to what Mia Mingus describes as access intimacy, capturing the entanglement of vulnerability and interdependence in relationships between disabled people and between disabled and non-disabled people (2011). Mingus argues that this form of intimacy is a crucial component to challenging inaccessibility and ableism (Mingus 2011).

Yet, recent work from India documents fissures in care relations for disabled people in familial settings, with non-governmental institutions, like in the case of Shishur Sevay, “mediating the slippery terrain between state regulatory mechanisms and market forces” (Addlakha, 2020, p. S53). Nevertheless, one cannot ignore the complexities of gender, caste, and class when examining the contexts within which these women came to become maashis at Shishur Sevay (Erevelles, 1996). Many of the maashis viewed their work at Shishur Sevay as a better alternative to the loneliness and anxieties they would experience as a domestic worker or the exploitative conditions of wage labour in factories. Care work is tied to gender and caste (Erevelles 1996). Even the term aador, particular in the context of children, is both diminished and exalted as the “ultimate pleasure from mothering” (Basu, 2001, p, 186). Although Shishur Sevay and the maashis, in enacting care intimacy (Dokumaci, 2020) counter dominant ideas of charity and dependence that underlie care relations for disabled people, particularly in the Indian context (Addlakha, 2020), the tensions between care and disability (Kröger, 2009) and the historical materialist context within which they occur cannot be discounted (Dokumaci, 2020; Erevelles, 2011).

Kahani’r saar: Discussion

Revisiting RQ1: Ways Shishur Sevay promotes and expands civic engagement

Shishur Sevay provides an example of how civic engagement and disability rights can be expanded by proactively envisioning and creating futures for the young women through equal participation and inclusion at home, in the community, and in educational experiences. Envisioning a real, actualizable future for disabled children where their bodily differences are embraced, stands in contrast to much of India and even other disability organizations. This fundamental premise laid the foundation for demonstrating response to research question 1–showcasing how the rights of disabled people were supported within Shishur Sevay. The young women at Shishur Sevay were truly the children nobody wanted; presumably their former families, the state, and even potential adoptive families could not imagine a future where these disabled children were anything other than an unwanted corporeal burden. Able to imagine a future for all children, Dr. Hahn welcomed them into their new home. Instead of seeing the young women’s past experiences and ability status as limiting, she saw these characteristics as integral to not only the mission of the organization but to each woman’s future. Dr. Hahn and the entire staff are committed to each woman’s long-term success, whether that be finding a career or remaining at Shishur Sevay living interdependently with other disabled people.

Often the state and other disability organizations claim to be committed to educating and envisioning a future for disabled children, but in reality, many of these institutions struggle to live up to this promise. This paper demonstrates how instead of perpetuating ableism (Johnstone, et al., 2019) or furthering institutional apathy (Sapra, 2016), Shishur Sevay provides a space where young women with and without disabilities are exercising their rights, pushing for community involvement, and claiming their stake (Hirschmann & Linker, 2015, p.15).

Revisiting RQ2: Mapping the young women’s lived experiences onto Bhattacharya’s par/des(i) framework

The disabled young women at Shishur Sevay create home and community in the very Desh that neglected the rights to social protection tied to their citizenship. Notions of home and community are troubled for disabled women in India whose intersecting needs are often ignored by both feminist and disability rights discourses (Ghai 2002). Yet, the focus on rights and civic engagement at Shishur Sevay reveals the possibilities for these young women to work through and within “beloved and problematic communities” (Tenet 4).

In relation to research question two and how promotion and expansion of civic engagement occurs at Shishur Sevay, these women have become ambassadors for inclusion simply by living their lives and becoming civically engaged in their communities. Recently, they have chosen to engage more intentionally, showcasing—through events such as community dance performances and an inclusive art show—what is possible when the boundaries of citizenship and opportunities for meaningful participation are not closed off to disabled people. Proud of their collective story after participating in interviews for this study, they pushed to partake in more community outings—something they emphasized was missing from their experiences at Shishur Sevay.

There is much to learn from these empirical findings to elaborate on the Par/Des(i) framework (Bhattacharya, 2019). Specifically, the young women at Shishur Sevay have a complicated relationship with their homeland which relates to Tenets 1 and 3. While they are not transnational, as orphans, their histories are layered and complex with having to reconcile the painful experiences of being rejected not only by their blood relatives but also for some feeling this rejection by their own country too. Yet, they still hold on to this nostalgic and romanticized sense of home, they re/member Desh, their conceptualization of Desh and have been supported at Shishur Sevay to honor that. While their home is permanently deferred, for different reasons than being transnational, these young women have recreated and continue to reconceptualize and reconcile their relationship with home.

Collectively, the descriptions of challenging institutional apathy, demanding equal rights for all and emerging as civically engaged ambassadors in their community highlight the heart of Tenet 4–beloved and problematic communities while also showcasing the young women’s liberation from oppressive structures (Tenet 2) in the ways in which they demand they have value and much to offer to their community. Despite what society had done to label these young women, in multiple oppressive ways–their inner resiliency was allowed to be nurtured and grow into a strong voice challenging and resisting others’ communal disciplinary gazes and structures. This was also evidenced by the teachers and staff who choose to work at Shishur Sevay, despite there being closer schools to them, they believe and are dedicated in the vision and now hold this space as a beloved community and have become ambassadors for inclusion too. While there are likely other ties to Tenets 5 and 6, we believe these exemplars will become more solidified as these young women get a little older and become professionals in the world. Yet, there is compelling evidence of the applicability of the Par/Des(i) framework to the experiences of these young disabled orphaned women and their teachers, staff and administrators at Shishur Sevay.

Concluding reflections

Situated in a context where paternalistic views about the capabilities of disabled people continue to be prevalent, Shishur Sevay demonstrates the implications of total inclusion for disabled people’s realization of active participation in society and civic engagement. At Shishur Sevay, the young women are free to build their own understandings of success. They are encouraged to develop their own visions for the future, achieve their dreams, and speak their truths in the ways they are able and willing to do so. Yet Dr. Hahn and the staff know that their words must be followed and reinforced by actions, and that the supports they offer—spaces, opportunities, technologies, love, and affirmations—are essential in the young women’s development as citizens. The study highlights how disability organizations in India can resist normalizing discourses around disability (Johnstone, et al., 2019) that may perpetuate ableism and instead create circumstances for the full participation of disabled women in their communities (Forber-Pratt & Lyew, 2019).

As a scholar traveling and translating between home in the global South and the academy in the global North (Sarkar et al., 2022), learning from and writing about Shishur Sevay provides an opportunity to Par/Des(i) disabled scholars like ourselves to counter prevailing perspectives towards disability policy implementation in India and to contribute to a rich body of everyday experiences that can support efforts to de/colonize disability studies in India (Staples, 2020). The challenge we grapple with in this paper through the Par/desi framework is recognizing the ways in which desh can be both romanticized and problematized.

The dominant research on India highlights the poor implementation of disability rights and legislation (Jagani, 2017; Johnstone, et al., 2019) and the vulnerability of disabled people (Hiranandani & Sonpal, 2000), While we recognize that this work supports activism and advocacy, counter-narratives such as Shishur Sevay bring voices of individuals within inclusion-striving spaces.

I am struck by the magnitude of Dr. Hahn’s expansive life and dedication to these young women and for making the world a better place. The history of Shishur Sevay spans over three decades of Dr. Hahn’s life, yet the interviews took place during one moment in time where Dr. Hahn thought back to the early days, current happenings, and the future. This was monumental for me, an adoptee from India, to learn about how Dr. Hahn’s thinking had evolved over time as well as the evolution seen in and across India. While I am intrigued and proud of the identified themes of civic engagement seen among the young women at Shishur Sevay, I do wonder if these themes exist in other inclusive community contexts throughout the rest of India. Though artifacts such as blogs, press articles, and perspectives from those affiliated with Shishur Sevay helped validate the trajectory of this history, as is the case with all qualitative studies, some of these data were richer than others. I am still unsure if this was or is just a unicorn in India or if this is indicative of broader cultural change towards a more inclusive and accepting culture. I am especially curious how civic engagement by and with people with disabilities help to change the narrative about ableism.

I was a first-year doctoral student when Anjali invited me to be a part of this study. For me, this project sparked an ongoing interest in questions of language and terminology in inclusive education in the global South, experiences of teachers and civil society organizations in enacting inclusive education, and the perspective of children and youth towards educational policies in India. Addressing these questions require reckoning with my fractured disability identity, the intersections of and my location across desh and the academy. Methodologically, as Anjali’s existing research has accomplished (Forber-Pratt, 2020b), I am interested in questions of carrying out inclusive and accessible (Nind, 2014; Price, 2024) inclusive education research that focuses on the participation of disabled youth and children in the research process.

In the future, I would be interested in exploring how the young women at Shishur Sevay and disabled youth and adults more broadly experience the changes in disability legislations in India. As I continue to work with civil society organizations in India, I draw hope from Shishur Sevay’s commitment to inclusion and development of civically engaged young women to demonstrate both what is possible and what is in tension when we imagine disabled futures and how these interact with caste, class, religion, gender, language and other forms of difference in India.

Further, this Par/Des(i) epistemology provided a way for me, the lead researcher, who often felt like an outsider due to my own complicated identities to feel like an insider and to do this work with my community, to learn from and with Sarkar (Author 2) and to disrupt many traditional gazes. This also provided me with a greater understanding of the depth of my relationship with India and with the participants who are my community.

The expansion of the Par/Des(i) framework to include those marginalized from within Desi culture and who intimately experienced colonization from within due to ableist and classist oppressive structures is empowering. This was empowering for us, two Desi disabled scholars. The identities and selfhoods of these young women are flourishing, and they are becoming strong civically engaged ambassadors in their own community, disputing many stereotypes and faulty beliefs about disabled people. As Par/Des(i) disabled scholars like ourselves, our amplification of the case of Shishur Sevay contributes to expanding both scholarship and disrupting and de/colonizing disability discourses. We hope this presentation of these stories alongside our stories helps other scholars to not be afraid to allow their full selves to show up in the work while exercising refusal towards extractive research practices (Tuck & Yang, 2014). Oftentimes scholars are instructed to keep their own identities out of the research process or the research write-ups, and we challenge this notion. This work would have looked much different without the raw and personal linkages and the deeper Des(i) framing we each brought to this project.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The study was funded by Peabody College Small Grants for Research.

Notes on contributors

Anjali J. Forber-Pratt

Anjali J. Forber-Pratt, Ph.D. is a disability researcher and activist. As a researcher, her primary area of work relates to disability identity development and inclusion. As a wheelchair-user for over 35 years, Dr. Forber-Pratt is nationally and internationally recognized as a disability leader and mentor. This work was completed when Forber-Pratt was a faculty member at Vanderbilt University.

Tanushree Sarkar

Tanushree Sarkar, Ph.D., is a postdoctoral fellow in the Department of Educational Leadership and Policy Analysis at the University of Missouri. She studies the implications of the global spread of educational theories, policies, and practices for social justice, teachers’ work, and the experiences of children with disabilities in schools in the global South.

Notes

1 The authors have intentionally chosen to use identity-first language of “disabled people” where appropriate versus person-first language of “individuals with disabilities”. This reflects shifts in language use, led by the members of the disability culture who prefer to refer to themselves as disabled. This is the preferred language in the UK by Disabled People’s Organizations, has been recognized in the United States and supported by the publication manual of the American Psychological Association (2019). The American Psychological Association states that identity-first language can be used interchangeably with person-first language.

2 This is a pseudonym.