Danilyn Rutherford: Right, exactly. Here’s the other thing to say about this. You’re told about things that happened in your childhood, and you’re told them so often that you think you have a memory of them. I’m sure writing this book has transformed my memory of certain things. At the end of the book, as all writers of this kind of book have to do, I include a disclaimer where I say that this is how I remember these experiences. Other people may remember things differently. 

Joshua Reno: None of the questions so far have been centrally about Millie. But this one is. There’s a chapter on sovereignty, but I think in a way, that chapter finds a name for is something that’s been happening throughout the book. Sovereign power, the way you describe it, is power you can’t bargain with. It’s insistent, it’s demanding. I love what you do with it. It’s brilliant in that one chapter, even though I think it does have relevance for the whole book. That being said, as an outsider to sovereignty studies, when I read “sovereignty” as a word, it seems so heavy with meaning. I think of indigenous sovereignty, debates about sovereignty, and like how it’s been used by Lauren Berlant in On the Inconvenience of Other People, they use it in a very specific way, and you’re repurposing it in this way. And so that leads me to ask, given all that meaning it has in, like, colonial studies, and given that you have written in that area specifically, and you know it very well better than I do, was the choice of this term meant to kind of draw either power from those other meanings or to deconstruct or unsettle them? Was it meant to challenge the assumption of Millie’s presumed powerlessness? Why might it not have been enough to say, “Millie’s agentive” or “Millie resists things”?

Danilyn Rutherford: There are always multiple ways of answering these kinds of questions. On the one hand, I’m going to say I had strong reasons for using the term sovereignty, and I’m going to defend my choice. On the other, the choice has to do with how I came to this book. If I had to describe myself, I guess I would say I’m a political anthropologist. All of my work has in some sense been about the political, but in an expanded sense of the political. I first wrote the piece that became that chapter when Deb Thomas and Joe Masco were working on the edited volume that was later published as Sovereignty Unhinged. They invited me to be part of the project. That made sense. I had written Laughing at Leviathan, and I had some things to say about sovereignty.

The Sovereignty Unhinged version of that chapter has two parts. The first is set in Papua during the period of colonial state building. It is about small moments during performances by colonial officials who were trying to extend their control over the interior of the island. They were trying to demonstrate that they had control over the situation, that they were sovereign, as it were, that they should be respected and obeyed as representatives of the Dutch colonial state. They did this through weapons demonstrations. They would shoot a pig, or a tree, or whatever.

The Me people who lived in this area were incredibly creative in their responses to these guys. The first time an officer fired a weapon, they would just flee. The officials wanted an audience to see how powerful they were. But the people were just gone, and they were gone with the food that these colonial officials needed to survive. Eventually the people came to really enjoy the weapons demonstrations as performances. They would beg the colonial officials to do them. They were like, “This is so fun.” They were not getting the message. They were turning away. Because they had other political universes that they were living in and creating day to day. They brought these outsiders into these universes and made use of them for their own purposes during this brief period of colonial state building.

Readers sometimes misunderstand my argument. I’m not saying that the Dutch weren’t incredibly violent, that colonialism hasn’t completely ravaged this land. I’m not saying that at all. But there are these small moments. I’ve always been interested in these small moments. The moment when you’re going through border control. The moment when you’re being called upon to respond in a certain way, and what happens when you don’t. The material about Millie lives together with the Papuan material in the same paper.

When it came time to write Beautiful Mystery, I felt like it was very, very important to talk about the political in relationship to my daughter. It’s not like I’m the first person to attempt to do something like this. Eva Kittay has tried to think the political by way of her daughter, Sasha, who is not that different from Millie. You turned me on to the work of Stacey Simplican. Stacey Simplican is so good at showing the degree to which our modern understanding of popular sovereignty makes certain assumptions about who qualifies to participate in the political; you have to be a capable subject, someone who is not drunk, cognitively disabled, or mentally ill. It seemed really important to think about Millie alongside these ways of thinking the political. If the point of the book was to challenge some of the assumptions I’d had around what it is to be social, and what the ingredients of the social are, I felt I needed to speak to the political.

Another side of my thinking here is somewhat utopian. Especially in this moment, when states and corporations are not our partners in saving the world, it seems really clear that we need to find new ways of being in relationship with one another. There are different areas where this thinking is happening. This is part of Deb Thomas’s interest in sovereignty, which I really appreciate and share. That was there. When I took this rather academic essay and turned it into a book chapter, those were some of the things on my mind. The Bayo Akomolafe material was also really helpful in this regard. Kelly Gillespie sent me that essay after reading an early version of this chapter. Khaled Furani and Elayne Oliphant read a later version, and they got me thinking about what Akomolafe means by “power with.” By way of his son, Akomolafe offers a way of turning away from colonial worldbuilding. What does this turning away actually look like?

But then there’s another side to the question. You know this from parenting Charlie. When you have a disabled person in your life in the U.S., you quickly find out that their life is awash in sovereignty claims. There’s federal law, there’s state law, there’s all this legal stuff going on that’s shaping what’s happening for them day to day. I’ve always been really interested in those relationships and the ironic way the whole regime gives their quirky reactions to things stakes you wouldn’t think they would have. I’ve always found this aspect of how sovereignty works within disabled people’s lives a really interesting thing to think about.

And then finally, there is the whole problem of care. Here, I’ve tried to think along with Eva Kittay, but also Rachel Adams, who has a wonderful new book on the topic, and Dagmar Herzog, whose work is incredibly suggestive.  What would it mean to have a society built around the power of vulnerability, the grip that others have on us, which can be non-negotiable? What would it mean to think seriously about what we owe to people who make themselves vulnerable to this form of power? I don’t think it’s a completely utopian thing to be thinking about right now, when you consider what’s happening demographically in the US and a lot of other places. What’s happening in terms of our harsh, fascist immigration policies. In the US, Japan, and much of Northern Europe, birth rates have plummeted. They’re slowing in the rest of the world. I don’t think that’s a bad thing.  But it does mean that there are going to be more old people to care for as time goes on. The whole question of care, how we provide it, and how we think about those who provide it—that’s a pressing question for the species. In that sense, beginning with Millie and using the word sovereignty, and not just power, resistance, agency, or whatever, allows us to bring to bear more conceptual resources and social resources and affective resources, more resources for world building, than we might have access to if we talked about Millie in terms of agency. Does that make sense?

Joshua Reno: That makes perfect sense. It also leads quite directly into the next question, which is about world building and mutual aid and what you rightly call Millie’s sovereignty. From my perspective, the book grows as it goes. At first, it’s you and your family, and often just about you. Even though you have a child and a husband, so much of it is about your feelings, about how it is for you. Then, as it continues, not only are there more people around you. You’re also considering more and more what their experience is like and how it is different from yours. You see that happening in the process of the book. We get to meet more and more people. Of course, we get to meet doctors and state workers, as you were saying, but also friends and fellow activists and classmates and caregivers and people who are a lot like Millie and people who just love Millie. And there are just more and more people like that in the text, until you have this wonderful flock by the end. The way I was thinking about this was in relation to Rayna Rapp and Faye Ginsburg’s idea of a new kinship imaginary. In the paper I’m thinking of they relate this specifically to parents and caregivers. But the flip side of that is that that world building is being invented in real time by Millie as much as by you. I thought that was a fascinating place to get to by the end of the book. Not to say that the book is wholly utopian. It’s just very realistic about the concrete practices that creating a new kinship imaginary involves.

Danilyn Rutherford: I’m really glad that you got that impression, because that’s really the impression that I wanted to create, that Millie has created a social world around herself. It happens to be true.

Millie has always had great caregivers. I do what I can to foster that; I try to pay people a living wage, which is not easy to do, but I do it. But there is also something about her that is incredibly engaging for people. She’s really quite magnetic. Not if you just walk past her in the airport, but if you actually spend time with her. After Craig died, I had some doctoral students who helped me out with Millie. Bianca Dahl, who was a student at the University of Chicago, told me how much she enjoyed babysitting her. “Millie is so soothing,” she said. She still is.  Millie and I were in the hospital overnight together.  She’d stopped sleeping, and I rushed back from a trip when they admitted her for observation. I caught her when she was beyond the manic phase.  We just lay together on her bed listening to The Golden Compass. Doing Millie things is super relaxing. There is something really seductive about her as a presence in the world.  She’s not always interested in you, and that’s part of the seduction, but when she is, it’s incredibly pleasurable.

I don’t know if you experienced this, Josh. Like I said, I was a reluctant mother. Craig wanted kids. I told him, “Yeah, I’ll do this, but you have to do half of the work.” The man goes and dies on me! But even before that, I had this attitude when it came to having children. I was going to get help. I was definitely going to get help. I was not going to be possessive about my children. And I’ve always had help. I’m getting to the point now where I am totally not the Millie expert. Below me, on the next floor down, Millie is doing her thing with Julie. She’s probably going to go out on a hike someplace, or she’s going horseback riding, or she’s going to the pool. There are all these other disabled people in town who know Millie. They’re people with different kinds of disabilities. I take her to an event, and everyone shouts, “Millie’s here!” They’re excited to see her. I didn’t do that. Millie did that. I tried to create the conditions in which it could be done, and we’re both very privileged and lucky that our lives have worked out that way. But there is something about Millie’s force in the world that I wanted to come through in the book. So in a sense, the book is about me, because I can write about me, and it’s about the world in which Millie lives, and it’s about her, but it’s not about her in a way that claims to know her. It’s more about her from the perspective of someone who has felt her impact. The force that she exerts. That kind of gets back to the sovereignty question, too.

Joshua Reno: I love that, the force of her flock. What was the term you use? I did okay on the SATs, but I never fail to learn a new word when I read a book. There was a word you used for the mixture of birds that make up a flock. And I think it’s used for, like, starlings, when in those configurations.

Danilyn Rutherford: Murmuration.There’s a back story to this. I got a lot of help in writing this book. It’s multiply authored, for sure. One of the pieces of help I got was by attending a workshop that Nomi Stone and her partner Ro Skelton offered as part of Field Studio, this initiative they have that is directed at ethnographic writers who want to improve their craft. They gave an example, which was a short passage by the nature writer, Helen McDonald. It was about birds. I became obsessed with birds. My partner and I found a bird that had flown into a building at the AAA in Baltimore. (Mary Beth Moss, who is on the Wenner-Gren staff, found a bird rescue agency; luckily it survived.)  Then there were the monk parakeets, which were an important part of our experience in Chicago.

I got into reading Helen McDonald’s work and became interested in murmurations. Murmurations are very very interesting. My friend Andrew Mathews’s son is in a PhD program in Physics and Engineering studying this kind of phenomenon. A murmuration doesn’t have a director, and yet it’s very organized. Each bird orients itself to the bird next to it, which orients itself to the bird next to it. With changes in wind patterns, the whole flock moves. A murmuration is a space of protection, because if you’re a little starling, it’s harder to get picked off when there are a bunch of you. The idea of the murmuration was really interesting to me in relation to Millie and all these people who are impacted by her and are trying to figure her out. Who copy each other and sometimes argue with each other. There’s this space around her, and there is something about it that this idea seemed to capture.

Joshua Reno: It captured it very well. This is me throwing myself into this, maybe more than I already have. You already talked about when you made the decision to start writing about your child.  There are things I thought about more than I did when I wrote about other things, including white supremacy, that also aren’t super easy things to write about.  But I worried more about how Home Signs was going to be misread. I worried that there were readings of it that I couldn’t anticipate. That can always happen; I’ve also read Derrida. The question was, how much could I know about these readings? Could I prevent them? Was I worrying too much about them? And this led me to think about how other people’s minds haunt you with their unknown interpretations of the text when your book is about a disabled child, and when you’re a parent writing about that child and you’re worried how your child might be misunderstood and possibly mistreated. Was that a challenge for you at all? Was that challenge different for scholarly or popular audiences? Were you worried about being misread?  Sometimes I feared that I wouldn’t get any real criticism because people would worry that criticizing me would mean they are taking the wrong side in a disability politics debate they don’t understand. All these are things I wondered about in my own work, and I wonder what they mean for you, if anything.

Danilyn Rutherford: For the record, I hate being criticized. This helps me in my day job at Wenner Gren, because I can be very compassionate with declined applicants. But no, seriously, that’s really a great question. When I first started talking about Millie in academic settings, it was pretty early on. I was teaching a theory class at Chicago. I would be talking about social theory, and I’d tell the students that I had this daughter who did this thing that was super interesting. This wasn’t within the frame of disability studies or within a narrative or anything. When I started writing about her in earnest in Santa Cruz, it was in a writing practice class. There are rules in writing practice. You can’t take your pen off the paper, you have to go with the first thought that comes to mind, and you try to be as concrete and vivid as you can. At the end, when everyone reads what they’ve written, there’s no praise or criticism. “Thank you” is the only thing anyone is allowed to say. I wasn’t really thinking about audience that much at that point.

When I started turning all this into a book, there were many things I worried about. I worry about them still. I worry about the fact that I’m exploiting my beloved daughter for theoretical ends. Like we do to the people we’ve spent time with when we’re writing an ethnography. That’s not something you can ever fully come to terms with. You really have to think about how you’re going to show up for people in the world beyond the text.

There’s that. I worry about that. I also worry about the sentimentality around this topic. I’ve given talks on this, and people in the audience have said, “Oh, you’re so brave.” Actually, my life is quite wonderful and very easy compared to a lot of people’s. So there’s also that.

Something in Home Signs that really affected me is where you admit that you’re going to be writing some intimate things about Charlie that Charlie did not give you permission to write about. And so, you needed to make yourself equally vulnerable. You do that really well in the book. I worry about this in my book. It’s intense reading for an ethnographic text; there’s a lot of personal stuff in it. But I felt that I had to be willing to have that stuff in there if I was going to be talking about Millie in this way. I had to be willing to tell the story in ways that revealed more of myself than I might otherwise have wanted to. The ethic that you lay out in Home Signs was important to me.

Then finally, there’s another problem I was thinking about. This might be the real answer to the question and perhaps the most interesting one. I don’t know if you’ve had this experience with Charlie. I’ve definitely had this experience with Millie, and I write about it in the book. When your kid is little, people see her and think, “Oh, she’s a really cute, kind of large one year old.” She’s actually three. Or she’s four. But people think they know how to engage with her. And then you get to the point when she’s nine. Or she’s ten. Or she’s thirteen. And people don’t want to look at her.

There are ways to write about people like Millie in which you refuse to provide a representation of a person when you know that that representation is going to feed stereotypes. At the same time, there are situations in which those stereotypes are so powerful that whether you represent the person or not, they’re going to be in readers’ minds. My response to that was to write as vividly and specifically as I could about the singularity of my daughter and the singularity of the other people we have met along the way. There are vivid descriptions of disabled people in here that don’t shy away from the way that bodyminds can be different. But I also try very hard in those descriptions to capture what’s specific about the glow of this person’s face, for example. What’s specific about the way this person sits or interacts or vocalizes. I tried to go the other direction. We’ll see if that works.

The other thing I need to say for the record is something you write about in Home Signs. Who writes these books? You say it’s mostly men. I think it’s women, too. These memoirs are usually written by white, pretty well-off people. Whether they are overcoming adversity or not, there’s a very privileged position they are writing from. Absolutely, I’m as privileged as you can get in our field. I have a great job. I have always had a lot of support. I’m pretty healthy for my age. There are all sorts of things about the way I am in the world that have made this easy.  I live in Santa Cruz, California, where there are excellent services. 

I felt that it was important to show that there are a range of different lives that people like Millie are living. For years I was able to pay for Millie’s care out of pocket. Millie has the care that she has now because I’m able to navigate the system. I’m able to navigate the system because I have the time to do it. I have a flexible schedule. I’m not working three jobs. I meet other families out and about. One of the good things about disability is that it brings you into contact with people from all different walks of life because people like Millie are so rare, so scarce. People live at home until their parents can no longer take care of them, and then they end up institutionalized. Our society offloads the heavy-duty work of care onto parents who obviously love their children, or one hopes. But it’s not a job one person can do alone, and there are a lot of people out there doing it alone. If I had written a book that was from that perspective, some of the things in the book would have been the same, others perhaps would not have been. Because I would have been much more engaged in trying to survive. 

Joshua Reno: That was wonderful. We’ve already talked a bit about writing. The last question I’m going to ask is about writing. You’ve already talked about trying to write vividly. You succeed in what you talked about. We talked quite a bit about memory and trying to revisit memories and dealing with the difficulties of memory. We talked about the politics, disability-related and otherwise, connected with writing about something as difficult as this. You accomplish a lot in this book. I can’t wait to see what you write next. But I am also trying to imagine being you as a writer. How have you been changed by this project? The next book might not be Beautiful Mystery, Part Two; it might be about something else, because you tend to write about different things. Maybe the next book will be about birds! But whatever it is, do you think there will be things from this writing experience that you will bring forward into your future writing?

Danilyn Rutherford: That’s a great question. I’ve always wanted to be a writer. My first goal in my life was to write stories from the perspective of my cat. I got a notebook, pencils, and scissors for Christmas when I was five, that kind of thing. Coming out of graduate school, I ended up at Chicago, where I taught first and where I got tenure. In that department, there was a real emphasis on precision, and knowing your stuff, and being able to describe your sources of inspiration, your analytic frameworks, in very clear and precise ways. I’ve always admired people who are able to do that—people like Webb Keane, for instance, whose his work I’ve always loved because he is so good at being clear and precise. You want your writing to have music. His writing has music. I feel like my early writing had a nice tune and was fairly precise. For people who were not already in my head space, it was completely impenetrable. But it sounded good. I was really good at the beautiful abstraction.

This book kicked my ass, if I can say that. I wrote every single part of it in 1600-word chunks and shared them in a feedback class with non-academics. They’d be like, “this is such a snooze. I am so bored.” If there was going to be an analytic concept, it had to earn its keep and earn it with a story. If I was going to bring in a theorist, I had to bring them in almost as if they were a character in the story. That was super good for me. The other thing that changed my writing was teaching at UCSC. I did a lot of undergraduate teaching. I took great pleasure in it, but I also got my ass kicked. I had to learn how to communicate in ways that were clear. I’m hoping to retain that impulse. If I’m going to trot out something fancy, it’s got to earn its keep. That seems like a good ethic. 

But also, it’s also really fun to write in ways that people you know might want to read. I think all anthropology could be more like that. We are forced by all sorts of institutional constraints to stint on the ethnographic writing part of ethnography. We don’t bring situations to life in the way we could. You think you’re dumbing down your work because you don’t get to give yourself ten pages on Bataille. But I think you can still do a lot of conceptual work and write work that’s pleasurable to write and pleasurable to read. I’m hoping I’ll be able to continue doing that.

Joshua Reno: Ultimately, I just want to thank you for writing this book. It is so good.