With many thanks to Erica Chiandotto for her assistance in preparing this transcript.
Intro
Jiya
Recognizing that I have limited spoons and limited energy, what does it mean for, for me to prioritize care immediately where I am with all of these people that give me a sense of home, that aren’t all in one place. And also recognizing that, like, a lot of this is possible for me, because I have a lot of privilege. And I am, you know, a settler colonist in the US, but I’m also an immigrant, which means precarity.
Kim
My community has also surprised me by looking like a number of strong, intimate friendships, with others who are disabled queer people of color, while also recognizing, of course, that this shifts between cultures, and is made possible in many ways by technology, and by understanding that time isn’t linear time, and that when we are able to connect, it is a gift.
[Intro piano music: forthright melody accompanied by a habanera dance rhythm. Fades down while Áine speaks]
Áine
Welcome to Disability Crosses Borders, a podcast and blog featuring stories where disability, migration and culture meet. I’m Áine Kelly-Costello and today, I talk to two disabled queer South Asian scholars studying in the US. If you like unpacking the language we use to make sense of our place in the world on multiple axes of disability, queerness, culture and more, as well as finding ways to show up in caring community for each other, I think you’ll love this conversation. Let’s dive in.
[Music ends]
This is disability crosses borders. And I’m talking with Jiya Pandya and Kim Fernandez, it’s so good to have you both here. Could you introduce yourselves and just where you grew up, where you live now, and any kind of identity or cultural communities you belong to, or that are important to you, and maybe your fields of study and scholarship as well. Jiya, do you want to start?
Jiya
Yeah, and thank you so much for having us here, Aine. So hey, everyone that’s listening. My name is Jiya. I use she and they pronouns. I grew up in the city of Mumbai in India. And then I lived just outside the close city of Pune where I went to boarding school for two years, and I moved to small town Vermont for college. And I now live in Philly but I’m doing a PhD in history and gender studies at Princeton University. In terms of cultural communities, I feel like the obvious answers are often that I am a part of South Asian community that I identify with like queer and disabled community as well. But I have complicated relationships with these based on whether I feel like I’m taking up undue space or I feel invisible. And I also definitely identify with sort of Graduate Student Union, and activist communities as well. School and work have shaped my residential status, for a really long time, which is a really immense privilege, but for a variety of reasons, including queerness, and losing family safety nets because of queerness, I felt precarious. And so precarity has shaped my relationship to a lot of these communities.
I study disability and caste in post colonial South Asia. So my fields of study are essentially Indian history and disability history. And I’m trying to figure out how the two can be an interesting conversation with each other.
Áine
Thank you so much for that rich introduction. And yeah, we’ll pick up on a lot of those themes as we go through. How about you, Kim.
Kim
I’m also really excited to be here. So thank you so much for having us just echoing Jiya. I grew up in Doha, since my parents had moved there a number of years before I was born. And I lived most of my life in Doha, including undergrad and then moved to India to work. I’m in Delhi right now for field work. But otherwise, I live in Philly. I’m doing a PhD in education and anthropology at the University of Pennsylvania. And similar to Jiya, I think cultural communities include South Asian which I’m of course ambivalent about as a category in many ways. International Student when in the US, definitely various kinds of disabled and queer communities, depending on how and where they take shape, where I’m physically based, and the ways in which friendships form to coalesce into communities. I also sorry, forgot to say this. I am non binary and my pronouns are they/them.
My work within my PhD focuses on disability and quantification. So how, at least in India, the experiences of people with disabilities, when seeking out identity documents for disability come to be made into numbers through the disability certificate or the unique disability ID.
Áine
Thank you so much. Yeah, you’ve both obviously thought a lot about these intersections between disability and community and the other ways you connect to culture, which are ambivalent and complicated, which is something I can relate to, as well. So if we could just segue from there into how you got into your current fields, and how your lived experience has kind of shaped your interests and perhaps approaches to research, Jiya?
Jiya
Yeah, that’s a good question. I think I, for me, it’s an interesting relationship between lived experience and sort of academia and theory, I actually have come to a lot of the things that I believe in, in my everyday life through theory, I got to college, but even in high school, essentially left home and discovered vocabularies for things that I hadn’t really been able to name before including queerness including disability. And so the personal and the sort of theoretical or academic have always been connected for me, but in in somewhat reverse order in that I’ve been able to name lived experiences through theory, which is also just, I mean, again, an immense privilege. And and then that’s part of why I want to do the things that I want to study, the things I want to study is because I am part of why I want to be a professor is because I want, I think naming can be really powerful. And I want to be able to provide students with names and words for things that they might not have names and words for. But also recognizing that those names and words have histories, right, because I study history, and I think context really matters. But I did definitely come to my word, even if I didn’t have the vocabularies for it, through sort of personal trauma, pain, and realizing that I wanted to think more deeply about my relationship to my body.
Kim
Thank you for that articulation Jiya. I was also thinking about kind of getting into my current field because I like lived experience have played a significant part in shaping my research, I started to get really sick around the time that I started graduate school. And that shifted the focus of my work on early childhood education and statistics to include an interest in disability. At that point, I was working primarily with census data from India on disability, and often came up against narratives of disabled people kind of not being counted adequately on the Indian census, not to say that this was not true or not a problem. But that these narratives were something I felt discomfort with. I couldn’t yet articulate why at the time. But it felt like this statement was erasing the lives and identities of people with disabilities who were already living and who mattered, even if they weren’t “counted” officially. And I think for me, I kind of my work shifted too, because I realized that at least the methods I was trained in qualitatively more broadly, were not sufficient as lenses through which to explore disabled lives and the ways in which I was interested in them. And so wound up beginning a joint PhD in anthropology, and that’s I guess how these two things connect. And very quickly, I think Jiya, what you just said, about, like, naming things, through theory was really powerful, obviously, because these weren’t, in any way, linear timelines for me to hold up lived experiences against theory, and see how they matched but that if I hadn’t sort of migrated and had the experiences I had around school, I don’t know what my naming trajectories would have looked like, in these specific ways.
Disability language trajectories
Áine
Thank you both. They’re really powerful reflections on what theory and academia can bring to making people feel valued back, particularly bringing that vocabulary to marginalized communities as as you were talking about, Jiya. And being there showing up for our communities so that the research and the, the theory as well as practice can really include us and, and count us, and especially people who are multiply marginalized, so thank you for that.
So the tagline of this podcast is “where disability migration and culture meet”, but disability also isn’t, you know, a single thing or a single definition. So from your experience and your research, I’m interested in how you understand disability within the South Asian, and yeah feel free to deconstruct or critique that term as well. And and US cultures that you are part of, and whether the experience of migration adds something, perhaps to how you think about disability or talk about disability, Jiya?
Jiya
Yeah, I mean, I think what Kim was saying about naming trajectories is really powerful. And I think, sort of like Kim was gesturing to, I definitely learned words for specific values, experiences and found certain communities in the process of migration. And I feel messy in saying that, because I don’t want to portray an idea that disability and queer community don’t exist in India, because of course they do. And there also are communities that don’t use those words that exist, that serve a lot of the same functions, and that’s part of what my research is about. But I do think that for me, at least, I found a lot of these words in this context, and I think part of it has to do with American commitment to identity, right and labels. And that’s not to say that India doesn’t have those we live in a sort of neoliberal transnational capitalist economy where these words traveled. But I, I learned my words in the US. And I think that is for me related to the privilege of migration. I think South Asia is a complicated term, because there’s class caste distinctions, there’s you know, and I come from a privileged upper caste, middle upper middle class groups in South Asia, which means migration, for me, meant more access and more opportunities. And that’s not the case for everybody that migrates.
Kim
I realize, hopefully, I’m not backtracking on what I said earlier. But I realized, as I was trying to think through sort of where I started, and when I started developing vocabularies, that a lot of it came from my undergrad, which was in Doha, but was at an American university. And I think in those moments, even though this wasn’t specifically a physical migratory moment, and most of the vocabulary around what it meant to be disabled, was not, was not kind of explicitly taught in the classroom or through theory, it was more so the idea of being located at the intersection of a number of different borders that allowed me to learn outside of the classroom and have the kinds of experiences within communities that centered around organizing and activism that allowed me to start naming what it meant to be ill and to live in community while being ill. And, of course, a lot of this has shifted to, which is to say that, in some ways, like Jiya pointed out very accurately coming to the US was also learning a whole new set of vocabulary around like disability, pride and disability as identity primarily because of the ways in which community spaces outside of academia that I’m a strong part of in the US emphasize these identities. I also wanted to think about migration as very much shaping my own relationship to disability and the relationships of a number of other international students. I know, say, for example, during COVID, folks who felt precarious, traveling from their own home countries to the US, were also feeling scared to talk about the risk to their health from this travel and didn’t have an option in terms of their visa, because of the ways in which being an international student and then being disabled made them precariously visible in specific ways. I think migration has shaped a lot of these parts, including, for example, my own identifying with South Asian community,
Áine
I think that’s picks up on really good threads in terms of coming to understand disability within different contexts, but also the dual precarity of being an international student and being disabled or having, you know, underlying health conditions in the time of the pandemic, as well.
Disability and queerness
Building on this idea of disability as fluid. Do you see more intersections as well with queerness? In the language around that, Jiya?
Jiya
Áine
Yeah, that’s beautiful. Thank you. Did you want to add anything, Kim?
Kim
Just sitting with how powerful what Jiya has said is, and thinking also about, I hope this quote is at least somewhat okay to present because I don’t remember all of it from memory. But bell hooks talks about being queer, as kind of being about like the self that is at odds with everything around it. And I think of disability or the way I came into at least my disability and queerness in similar ways, as at odds with so much of what I had imbibed culturally, also, as Jiya has named a product of caste and class locations, and of ideas of culture from both these locations that have been passed down to me primarily through family. And so to the fluidity of being able to see these identities as things that are always open, and always sort of changing whether or not they intersect with each other, has been really powerful for me, as has been the ways in which temporality and spaciality kind of shape, even how we name disability and queerness
Áine
Thank you, I think you both bring out really powerful themes around understanding disability and queerness, both in ways that are connected to culture and community and care and chosen family. And, you know, it just feels so much at odds. It’s was I think of, you know, the UN Convention on the Rights of Persons with Disabilities or something that has, you know, this legal conception of disability being impairments in interaction with social barriers, and it’s, it’s a lot more than that. Right?
So we’ve talked about identities around disability, migration and queerness here quite a bit. And I think from from what you’ve been saying that the understandings of our experiences through such identity categories, kind of probably has its limits. But I’m interested if you can talk a bit more about how that feels to you. And if there are ways to talk about our experiences and identities, perhaps in ways that don’t fall into these traps. Jiya?
Jiya
Yeah, thank you. You know, I think as much as I don’t think it’s as simple as identity good, or identity, bad community good. I think identity is trickier. I think on the one hand, it allows access to resources, if someone identifies as disabled, if they can get all the right paperwork to be legible as such, it can be really helpful. And also, you know, it also means exclusions. And so I think of identity as strategic and sometimes useful, but not necessarily the sort of horizon of our politics and our ways of gathering. And I think actually, that care and community as rooted in care is a great corollary to identity in thinking about just networks of care, whether that is ostensibly through identity. And I think sort of crip community in the way that Leah Lakshmi, Piepzna-Samarasinha talks about this, like really thinks about care, as a way to participate in community that is non identitarian. And I think we care for lots of people that we don’t agree with, right? And I think that’s a really interesting way to think about community and the ways that we show up for each other, recognizing, of course, that the limits of care and identity are that these are not just like individual or sort of social processes. They’re also shaped by systems of oppression. And so I think in thinking about disability identity queerness migration, I just want to acknowledge that I think a lot of it is we’re having this conversation in a, in a world shaped by things way beyond our control. And that is painful, but it also means that community can be a really important space of survival.
Áine
Thank you, that’s super powerful. And how about you, Kim?
Kim
Yeah, it absolutely is for that response. And your question. I’ve been thinking a lot about the what else. Obviously, for the same reasons, I think, in large part because it’s not either good or bad, it’s, in my experience, at least, often, the limits of identity are not just that they don’t fully capture the range of our experiences. But also because then categories are sort of mapped or thought of as additive rather than cumulative, or constitutive. But I think the other wise for me has also led me into us many times, my own use of identity labels, even if unintentional, gatekeeps the way community is formed. And I think about this particularly from the work of Mia Mingus, and access is love. And thinking about sort of access as a relational way to form spaces where we can and do care for each other and create the worlds that we want to see has sort of been a really powerful way for me to ground myself in asking, if this category doesn’t work for me, or if I feel a tension with it, at least theoretically, or in the ways that shows up in my life, what does it look like when I practice? What are the limits, even of [word unclear] identity? What does it mean to focus on restorative justice practices and organizing? And to understand that care, it’s very many different shapes. For me, I see it as like, very directly connected, because this is sort of where my thinking about disability and queerness and the meandering from it has led me to.
Áine
Yeah, thank you. I think that’s really powerful and understanding categories, not only as being dynamic rather than static, but also rooted in practice. So like, rooted in this ethic of care, which is, you know, action oriented, which is like a way of showing up for each other. Did you want to expand any more on because I know, we’ve talked about it a little bit, but like, what community means to you, and whether what community looks like, shifts, sort of between cultures, and maybe also with the increasingly online spaces that we have now for building community? Jiya?
Jiya
Yeah, I mean, I think what Kim was saying about these things as dynamic rather than static definitely sits with me. And I think community obviously shifts between cultures and spaces. But for me, my strongest idea of community for myself has been my chosen family, and they’re everywhere. And so you know, access to technology has been really helpful. And in that ways, the sort of modes of access that disabled folks have been talking about forever, that the rest of the world seems to have just woken up to, in the pandemic, have been really helpful.
Áine
Can I just interrupt you very briefly, I’m sorry. I just wondered if you could just unpack like talking about your chosen family? And like, what that means to you? And what that looks like?
Jiya
Yeah, yeah, I mean, for me, chosen family has meant investing sort of significant time and energy and resources and people that wasn’t, that aren’t my birth family, and I love my birth family. But I have a pretty tense relationship with them for a variety of reasons. And so chosen family has meant people that I found in my world that were friends or teachers or people that I met organizing, that provide me that sense of comfort, and it also means that I prioritize them in ways that aren’t typical to prioritize the people around you that aren’t your sort of immediate in sort of like cis heteronormative worlds, your immediate kin. So that’s what chosen family means to me. And I have really sort of intimate and close relationships with friends and people that identify as chosen family. And so investing in that alongside investing in my immediate locale. which is currently Philadelphia, and currently actually very rapidly gentrifying West Philadelphia has been something that I’ve been trying to hold and think about. Recognizing that I have limited spoons and limited energy, what does it mean for, for me to prioritize care immediately where I am with all of these people that give me a sense of home, that aren’t all in one place. And also recognizing that, like, a lot of this is possible for me, because I have a lot of privilege. And I am, you know, a settler colonist in the US, but I’m also an immigrant, which means precarity. And so thinking a lot about the ways I show up in relation to the people around me. So did that make any sense?
Áine
Yeah, absolutely. And I think it’s a really concrete, great example of what showing up looks like for you and what doing care work means in, you know, in your in your life. So thank you for sharing that. How about you, Kim?
Kim
Yeah, Jiya, to your question, I think it made a lot of sense, particularly because it starts to find reimagining what queer disabled community can look like for so many of us, and how that could be different from other sort of ideals or forms of community we’ve encountered elsewhere. I, for instance, have been taught to think of community often as like a large group of friends. And while it isn’t the case, for me that these don’t exist, my community has also surprised me by looking like a number of strong, intimate friendships, with others who are disabled queer people of color, while also recognizing, of course, that this shifts between cultures, and is made possible in many ways by technology, and my understanding. The time isn’t linear time, and that when we are able to connect, it is a gift but that this has been a really hellish and hard couple of years. And that for me, that I think has been in many ways, the foundation of building and holding community through this pandemic, to locate care within it and to give each other space and to offer grace in how we show up for each other.
Áine
Thank you so much to you both. Is there anything else that you’d like to talk about or expand on at all that we haven’t talked about yet?
Jiya
I’ve been thinking a lot about reparations and the, the ways we can have these conversations and really abstract theoretical emotional ways. But what that means for recognizing the ways that we exist in the world, the the privileges and the sort of positionality is that we hold. And so I think, one parting thought that I am left with is I guess it’s a question to whoever is listening, which is, what are you doing? What are we doing, to make sure that our investments and care are not just sort of emotional, but they’re also material? And they think a lot about systems of power, alongside the incredibly personal and intimate, whether that’s giving money to speeding or mutual aid? And how do we make that sustainable for the long term? That’s the question that I’m reckoning with.
Áine
Thank you. It’s given me a lot to think about as well.
Kim
I think along similar lines to what Jiya was saying, one of the alternative justice communities that I’m a part of, noted the other day about? community, not just being people we share our politics with, but also people we share resources with. And that’s been a really strong way for me to think about when and how I show up. And I know for a lot of others in my circles too to think about what it means to form and constantly do the work of committing to these communities. And so I really appreciate Jiya, your articulation around this. And around the many sort of axes of positionality that we find ourselves along. Because I think that these are such ongoing, constant conversations that always motivated me at least to think and rethink. And I’m glad to have been able to do this today with both of you.
Áine
Thank you both so much, all of your experiences and insights and articulations of things that could be really theoretical, but also have such real world impacts and connections for us as disabled people and especially for multiply marginalized disabled people, queer and people of color and between cultures as well. So thank you so so much for making time and for sharing this space with me
Jiya
Thank you so much for doing this and for sort of raising such interesting questions and continuing to do this work yourself, thank you.
Kim
[Outro piano music: forthright melody accompanied by a habanera dance rhythm. Fades down while Áine speaks]
Áine
Before you go, if you appreciated this episode of Disability Crosses Borders, it would mean a lot to me if you could tell a friend or colleague about it to help it reach more people. You can also like Disability Crosses Borders on facebook, and sign up for email updates at disabilitycrossesborders.com. Send your feedback to hello@disabilitycrossesborders.com. Thanks for listening. Till next time!
[music fades out]
Disability Crosses Borders 
2 comments
Comments are closed.