
https://www.dukeupress.edu/disability-worlds
This interview took place on Zoom rather than email, and has been edited to reflect our vibrant conversation
Bridget Bradley: Having followed your work over the years, and in waiting patiently for the publication of Disability Worlds, I really loved how this book culminates almost two decades of fieldwork while also weaving in your own personal stories. It is beautifully curated, and simultaneously celebrates how people with disabilities are living otherwise in the United States, while reinforcing the importance of making disability count through empowering stories of disability justice and world-making.
Faye Ginsburg: Thank you so much Bridget! In the book, wesituated our disabled children’s lives among the experiences of advocates, families, experts, activists, and artists who are part of the disability worlds that they traversed. We wanted to show how disability consciousness emerges in everyday politics, practices, and frictions.
Rayna Rapp: Our chapters address dilemmas of genetic testing and neuroscientific research, the ways that kinship and community are reimagined, the challenges of special education, and the perils of transitioning from high school, what many call “the disability cliff.” We also address the vitality of neurodiversity activism, disability arts, politics, and public culture. Our fieldwork with diverse disabled New Yorkers and their allies reveals the bureaucratic constraints and paradoxes established in response to the disability rights movement, as well as the remarkable creativity of disabled people and their allies who are opening pathways into both disability justice and disability futures.
Bridget Bradley: I am keen to hear some of your reflections on the process of working, writing and raising children alongside each other over the years. How have you managed to intertwine your lives and research so successfully?
Faye: It is joyful for us; but we are very, very fortunate to have our collaboration.
Rayna: How did it start? So I gave a talk at the CUNY Graduate Center in 1982. Faye was a doctoral student there and I was an Assistant Professor at the New School, and we started talking…
Faye: …and Rayna became an outside reader in 1986 on my thesis on abortion activists and then we just kept working together.
Rayna: We started to think about the way in which gender and reproduction were being transformed comparatively across the globe. And by the time we edited the book Conceiving the New World Order: The Global Politics of Reproduction in 1995, we were very firmly committed to working together.
Faye: Then Rayna started doing her research on amniocentesis, and I was pregnant. So, I volunteered myself as a research subject.
Rayna: And we were seeing the connections. You [Faye] are working on abortion. I’m working on genetic testing and prenatal technology. And then Faye’s daughter Sam is born in 1989 with this mysterious set of symptoms, and we just kept in a constant conversation as Faye and Fred (her husband, anthropologist Fred Myers) had to figure out how to enable their daughter to both be diagnosed and flourish.
Faye: And because by then we were very close friends, our families were very connected from the beginning, from the birth of Sam who had a rare degenerative Jewish genetic disease, Familial Dysautonomia, and then later Rayna’s son, Teo was born…
Rayna: …who had a mild disability, dyslexia. It kept the conversation going about how to deal with the bureaucracy of special education, and all the injustices our disabled kids experienced, whether they were microaggressions, bullying, or the way in which children who are different are excluded from so many public events and venues; their lives are not necessarily cherished or valued by the larger community.
Faye: Rayna was looking at the early days of genetic testing; disability was inherently part of that conversation, which wasn’t always being addressed in the research going on in reproduction. And then, of course, Sam’s birth, at a time when there was no genetic testing available for her condition, very dramatically signalled that there was something I needed to understand about her difference, and Rayna was by my side.
Rayna: We didn’t think of it as doing autoethnography, but we were already launched on that path.
Faye: We were in constant conversation, and because it was about our familial lives and our intellectual lives, and increasingly, disability worlds, the discussions were pretty seamlessly interconnected. We just really love thinking, researching and writing together, and because we’ve done it now for such a long time…
Rayna: …we just finish each other’s sentences! We fight about semicolons and writing shorter sentences!! People think there’s some deep psychological meaning to our relationship. Actually, it’s all about editing [laughter].
Faye: We know a lot of people who work together who alternate writing: “You do Chapter One, I’ll do Chapter Two”, but we just sat down together from the beginning and wrote everything together.
Rayna: …and we don’t know why but we just started writing, and we’re always in this office, which means only Faye can type because she uses a trackball mouse that I can’t use. So, we have to talk, and I have to peer at the screen, and she always knows if I’m getting upset about something she’s putting on the keyboard because I stand up and I go closer to the screen! [laughs]
Faye: She’s very small. She has to stand up [laughter]. So we’re very comfortable writing together, plus we’ve experienced so many of these things together that we write about in the book. It would be more efficient if we said, you do Chapter One, and I’ll do Chapter Two. But we just wouldn’t know how to work that way.
Rayna: Right. Now we have a shared archive. I mean, we’ve done so many interviews together that when we do them apart, we know how to think about each other’s responses. And that’s part of a long relationship.
Faye: There are parts of the book where Rayna did more of the research or I did more of the research… But we have just combined everything in the book
Rayna: …because, as we often said, we don’t know where one brain ends and the other begins.
Bridget: Disability Worlds is an incredibly accessible book, that will appeal to a wide range of readers including disability scholars, activists, and allies. In particular, one of the book’s main theoretical contributions is the notion of “new kinship imaginaries”, which speaks directly to families navigating disability worlds.
When writing the book, who did you find yourself writing for? What decisions did you make in order to increase its accessibility or appeal to different audiences?
Faye: Initially, we weren’t sure if we were going to do a book. And then we realized that we’d like our work to have that presence, to be both an anthropology and a disability studies book. We are allies to our children and the disability community. We are parents of disabled kids. People respect us for the fact that we support our children and try to find and make opportunities for them and many of their peers. But it was so important that we had been building a presence for disability studies and disability, arts and justice at our university, NYU, where we created a Center for Disability Studies. We really wrote the book with the disability community—including our kids – reading over our shoulders, having a conversation with us. And we’re super aware that we had to earn our credibility, and we have to continue to earn it. We’re waiting to see what the reviews are!!
Rayna: I think it will unfurl over the next few months, and even years to see how the book makes its way in both the disability studies and the anthropology audiences, and whether it has a life. We were delighted that you thought the book was accessible. We hope the book is accessible. But that doesn’t mean that it’s going to become a runaway hit bestseller. We’re just hoping that there will be a kind of network of sites, some of which we have some ability to enter, and some of which will just have to organically flower on their own, where people may come to appreciate the complexity of both what we’re writing about and what they might learn and contribute to it as well.
Faye: We thought about writing a book that jumped the fence into a more popular idiom and didn’t necessarily have as much academic language in it. Or we could have written about things like kinship in a more anthropologically theoretical way; it was really important to us to be accessible. You know many people have now read the book who don’t work in academia, and who have disabled children, or are disability activists/allies, and the book seems to have really resonated with them. But at the same time, we wanted it to speak to anthropology, and connect to the broader disability community.
Rayna: Absolutely! We continue to hope that anthropology will change and recognize the significance of disability –a fundamental form of human difference — to our field. And, it IS changing. Good things are happening but there is an ongoing struggle for recognition of this area. It is important to us that this be in a language and in a set of familiar research categories for anthropologists who might read the book and say – “Oh, this belongs in my introductory course”, or “Oh, this belongs in my course on the arts”. It had to be available in the categories that anthropology recognizes because the discipline sure has had a hard time recognizing the value of the category of disability.
Faye: One of the reasons we kept Disability Worlds for our title is because we were very struck, as you have been in your research, Bridget, by the incredible world-making activity we kept witnessing in the disability community. Once you have recognized that you been endowed with this label – disabled – for better or worse, people recognize, what some have called “crip kinship”. But these forms of community have been under-recognized. The book shows how people find ways to do the world-making that enables them to move beyond the sense of difference and stigma to being part of a community that is insistent on creativity and justice, and telling their stories from their point of view.
Bridget: Many of the people who you feature in this book are well-known disability activists, allies and artists. Likewise, some of the scholars you theorise with are also activists, and so the book offers a vast collection of recommended people and resources to explore, including films, documentaries, theatre shows, and books – all of which would enhance teaching on disability. The book also describes the innovative approaches to education you witnessed during fieldwork, and the inspiring examples of inclusive teaching environments for young people and adults with learning and sensory differences. While you do mention some of the resistance you have received from colleagues in response to your efforts to make academic learning more inclusive, I wonder if you have been able to introduce some of these innovative approaches when teaching Disability Worlds at NYU? In other words, what are essential adjustments we can bring to our classrooms in order to do justice to teaching and learning about disability in higher education?
Faye: The first essential adjustment is that we recognize that our students know so much. They’ve been born into a world that didn’t exist for us. We were born before the passage of the Americans with Disabilities Act, while contemporary disabled young people and their allies have experienced support and educational opportunities in ways that were not available in our generation. And they bring so much more awareness and experience to class; they teach each other and they teach us. We use ethnographies by disabled scholars which are going to really engage our students, for example work by Michele Friedner, Karen Nakamura, Arseli Dokumaci and other fantastic scholars. Whenever possible, we invite these authors to zoom into our classes so the students have an opportunity to talk to them.
Rayna: And that is a way of saying this is a new way of doing anthropology. Pay attention. And yes, it’s disability studies. But it’s also a new way of thinking about ethnography.
Faye: You learn that in an undergraduate class there are going to be people in their power chairs, along with others who have very visible issues. Those students usually are strong activists by the time they’re in college. But then you learn all these other things, all the invisible disabilities that people are struggling with, especially when they are coming from a range of cultural backgrounds. Some are coming out to one another for the first time, and they offer one another a lot of remarkable support.
Rayna: But there is something else that happens in those undergraduate classes which we started calling the “pedagogy of the chat box” during Covid. They support one another, and they come to have very enduring relationships amongst themselves, which we see in the ways that they use the chatbox on Zoom.
Bridget: Finally, the book’s introduction addresses the inherent ableism in anthropology, and slow but significant work being done to foreground disability within the discipline. You also mention the potential of an engaged anthropology that embraces participant observation (or in your case “observant participation”) in order to capture the way research and activism intersect. I appreciate this powerful endorsement for anthropologists to combine autoethnography or deep reflexivity with non-extractive research collaborations, and you clearly demonstrate the incredible impact that can emerge from these methodological and ethical choices. What further developments would you like to see for the future of anthropology and disability studies? And what advice would you give to those of us attempting to use our own lived experiences to bridge the research/activism nexus?
Faye: When we started this work many years ago, we thought, where is disability in anthropology? And even though there were some fantastic pioneering folks who did some really important door-opening books and conversations which we wrote about in an Annual Review essay in 2013…
Rayna: …there was a bias against it. And I think there still is.
Faye: I think it’s getting better…
Rayna: …but it’s still a struggle, even more than it is in some neighboring or adjacent fields.
Faye: So, despite the ongoing commitments to social justice, movements, and other things that have emerged in anthropology, disability has been very slow to have a presence in our discipline, which is still very ableist. We understand that this form of difference – disability — is fundamental to the human condition and yet is still not sufficiently acknowledged. And we are also trying our best to avoid the sin of extractivism; that is really a big issue. When you are doing autoethnography, your stakes are very much on the table. You are pulling that information from yourself and from, in our case, our children and the many disability worlds we learned about with them, and with their permission.
Rayna: It starts long ago, in the history of anthropology, the colonial critique has evolved into understanding the problem of extractivism, and insisting that you be reflexive about your own position and what you both contribute and take out of the work you do with others. For us, our roots in feminist anthropology were so important. That’s really what brought us together in the first place. All of that was part of reflecting on our own lives and the politics of what was going on around us, and being porous to those critiques rather than to some kind of defensive upholding of the expertise of anthropology. That’s an ongoing struggle that goes on. It’s not done, and that’s part of where we are now, bringing that kind of reflection into this conversation. To answer your question, I’ll say something very banal, which is: you end up planting where you live. You have to make the institutional change, whatever the struggle, exactly where your workplace, your community and your family are.
Faye: And it demands action. We’re at a university. We’re doing disability studies. There are no ramps in half the buildings where they are needed (as one of many examples). So we started a committee to change the accessibility of the campus. It’s an extension of the activism that we embrace. It’s very hard to write about this without looking around and saying, “Oh, my student using a wheelchair can’t get into my office. How do we fix that?”
Rayna: This is not a theoretical question. The institution which provided you with shelter also needs to be critiqued and transformed. That’s true within the AAA and it’s true within the university and wherever it is that you are investing your life’s energy. So that’s the kind of knowledge that we have learned really goes right back into the world – to disability worlds — in a variety of ways.



