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Babes in Bookland
A podcast celebrating women's memoirs, one story at a time!
Babes in Bookland
AUTHOR CHAT: Danilyn Rutherford on Her Memoir "Beautiful Mystery"
Does love need words?
I sit down with anthropologist and author, Danilyn Rutherford, to explore Beautiful Mystery, her memoir about raising Millie, a luminous daughter who communicates beyond speech, and the radical shift that happens when language stops being the measure of a life.
We trace her craft journey and discuss how Danilyn brings an anthropologist’s eye to family life, reckoning with the field’s history around eugenics and capacity while arguing for a social definition of personhood: we are human because we hold one another up. We are human, simply, because we are. That lens reframes speech therapy from “fixing” to curiosity. The result is a powerful invitation to meet people where they are and to see communication as more than words.
The conversation also moves through sudden loss-- Danilyn’s husband Craig died when their children were six and three-- and the quiet, practical ways grief reshapes a home. From there we widen the lens to advocacy: why caregiver wages, Medicaid access, and immigrant labor are the backbone of a functioning care system; how austerity and border crackdowns make families more fragile; and why investing in communication access is a justice issue.
Press play for an intimate conversation about parenting, grief, ethics, and the politics of care. If the episode resonates, share it with a friend, subscribe for more women’s memoirs, and leave a review with the moment that shifted your view of communication.
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If you have any comments or questions, please connect with me on Instagram or email babesinbooklandpodcast@gmail.com. I’d love to hear your suggestions and feedback!
Link to this episode’s book:
Beautiful Mystery
Other links:
https://communicationfirst.org/
https://nod.org/
Writing Down the Bones by Natalie Goldberg
Beautiful Lives by Stephen Unwin
The Question of Unworthy Life by Dagmar Herzog
Transcripts are available through apple’s podcast app—they may not be perfect, but relying on them allows me to dedicate more time to the show! If you’re interested in being a transcript angel, let me know.
Connect with us and suggest a great memoir!
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Welcome back to Babes in Bookland, your women's memoir podcast. I'm your host, Alex Franca, and author Danilyn Rutherford is here to discuss her memoir, Beautiful Mystery: Living in a Worldless World. Hello, Danilyn. I am so happy to have you on the show today.
SPEAKER_00:Oh, I am so honored to be here. Thank you so much for having me.
SPEAKER_02:Thank you. Your memoir was informative, honest, and I thoroughly enjoyed learning about your daughter, Millie. Your love and acceptance of her poured from the pages, and you didn't shy away from sharing difficult feelings or experiences as you navigated solo parenting after the death of your husband against a world who doesn't place much value on your daughter's life. I think we have to be honest about that. You came face to face with your own expectations of life and motherhood and your own internalized biases. And now, through your memoir, you fight and advocate for your daughter, for her worth, for her voice, for her happiness, for her services to support her. Let's get into it.
SPEAKER_00:Great.
SPEAKER_02:You have your doctorate in anthropology. What exactly is anthropology?
SPEAKER_00:It's, you know, when you ask anthropologists that question, we always blance. It's like a little bit like the Supreme Court justice who's like, what is per pornography? I know it when I see it. But anthropology literally means the study of people. Now, a lot of disciplines study people, psychology, for example. I think the difference is anthropology studies people in their complexity and singularity and diversity, and in the way that they're embodied in the world too. So within the American version of the discipline, we have biological anthropology, which studies what it is to be an embodied human being. It studies, you know, human evolution, archaeology, which studies people in time, and then cultural anthropology, which studies, you know, people in their own unfolding histories. I mean, my own work is both historical and ethnographic and deals with a lot of different things. So maybe the best way to describe it is, you know, if you had a psychologist who was doing a study, they might pick out like 300 undergraduates at their university and have them do surveys, right? And then they would make assumptions about what human beings are all about and what makes them tick. You know, if we were going to study 300 undergraduates at universities, we'd tell you what 300 undergraduates at universities are like and all of the sources that go into making them tick. So, you know, we're really kind of about the story, about the history, about the singularity of people. So when we make claims about, you know, what makes us human, it's always with a certain modesty and looking more for echoes between places rather than, you know, strict laws. So that's that's that's the rap I prepared for today. It might be different on a different, like I said.
SPEAKER_02:I loved it. What got you interested in this field?
SPEAKER_00:Uh, an accident, totally by accident. I mean, I think, you know, when you think about how you end up doing something, it's always easy to make up a story. So it's like, yeah, when I was five, my goal in life was to write novels from the perspective of my cat. The other thing I like to do was look at atlases and chart sea routes to any part of the world. Um, but yeah, then I, you know, I was interested in science. I was just kind of interested in everything. I studied both biology and history as an undergraduate. But I also took some time off. I just had this adventurous streak and, you know, rode my bike through Europe, ended up staying in France, being a nanny for a family in Paris. You know, after I finished school, I knew I just wanted to live outside the US again. And so I went to Central Java and taught English for two years. Came back, worked for a little nonprofit that made small grants, but kind of wanted to get back to Indonesia. Love living with people, love learning about their lives. And that seemed like, you know, way to do it was to go to graduate school. And I only applied to one anthropology program at Cornell because there were people there who knew a lot about Indonesia, which is where I wanted to go. And just kind of like stumbled into anthropology. I had never taken any anthropology when I started my PhD. Yeah. So the irony is, you know, I kind of have ended up an anthropologist. You know.
SPEAKER_02:Well, Danilyn, I would read that memoir as well. So, you know, just putting that out there. Yeah. That's incredible. It it seems like you were just led by love and by your passions, and you gave yourself permission to trust that life will work out a certain way, whatever that way is. Yeah.
SPEAKER_00:You know, it's kind of generational. I mean, I was kind of like the wannabe hippie generation, and I had this real kind of idea that life is about adventure, it's not about career or profession, you know. So I just really ended up kind of following my passions, right? And and I think that's often how things unfold. As much as you think you're going to have a really specific kind of route through life, it often doesn't work out that way. So, in a sense, you know, accepting invitations, embracing what comes your way is often the best way to kind of find your way in life, I think.
SPEAKER_02:Yeah. Life is what happens when you're busy making other plans.
unknown:Yeah.
SPEAKER_02:Let's talk about sitting down and realizing that you wanted to write this memoir, Beautiful Mystery, about your daughter.
SPEAKER_00:Yeah. So I kind of had this idea I wanted to write about Millie when she was little and first kind of going into early intervention and doing therapy. And I was just kind of coming to terms with the fact that, you know, she wasn't like hitting milestones. And just to back up, you know, I was a reluctant mother, you know, with my husband Craig. I'm like, okay, I'll have kids. He loved kids. He really wanted kids. I'll have kids, you have to do half the work. And then the other side is like, I don't really know how I, you know, this is not going to come naturally to me. I have to buy the guidebook. So I had like the what to expect books on my shelf. And it's like, I thought, oh, I'll write a book called What Not to Expect.
unknown:You know.
SPEAKER_00:But then I kind of put away that idea. And it wasn't until I moved to Santa Cruz that I really started writing about Millie. And I joined a writing practice class with a teacher, Laura Davis. She's a student of Natalie Goldberg who wrote this book, Writing Down the Bones. And writing practice is great because it's basically you, you know, have a prompt, the rules are you just have to keep writing first thought, best thought, be concrete, be specific. You know, so I started doing these classes and just generating a lot of material about Millie and my life with her. And then she started sneaking into academic papers I was writing, you know, and even when she was tiny, I would teach theory courses, and I couldn't help but talk about my daughter because it's like, you know, I'm teaching all this stuff about what it is to be a human being. And then I'm like, well, and then there's Millie, you know. So I couldn't help but want to talk about her. And so I had a set of essays, I had some more memoiristic writing, and I had just finished my third academic book, and I'm like, yeah, I just want to try to turn this into a book. So I didn't really know what kind of book it was. At first, I thought it was an academic book with some personal writing woven through it. And then I thought it was a memoir with some academic thinking woven through it. It really kind of was a process figuring out that it was going to be the book it is, which is somewhere in the blur between those two things.
SPEAKER_02:Yeah, I would agree. I would say it's a memoir with some academic writing, but but you make it accessible, which I appreciate because I am not an anthropologist, but you lay it out so smoothly. Here's what the history of this is. Here's what we need to be doing better. And here's why it matters, because here's my daughter.
SPEAKER_00:Exactly. And that was hard work. It's not easy for academics to write in ways that are accessible. We're really not taught to do it.
SPEAKER_02:So well, you did it. So that's good for you. Good for you. Yeah. Okay. So you went to this writing practice. Did you have any rituals that you discovered? Were weren't there anything ways that you were able to sort of switch your brain into a different mode?
SPEAKER_00:Yeah, I mean, writing practice is great. It is a ritual in and of itself, you know, because you have really strict boundaries about it. And you're also doing it with other people. So it's the way it works is everyone writes to a prompt for like 10 or 15 minutes and then you read aloud what you wrote. And in those classes, the only thing that you're allowed to say is thank you, right? It's not about being evaluated. It's just about the process of writing, which I think for me is just really important. Now, later I joined a feedback class where people were very much allowed to say this other than thank you. But yeah, I think the ritual for me is I really had to set aside, you know, times in the day. Like, you know, I'm a really early riser. I'm very athletic. I get up, I work out every morning, you know, I'm pretty disciplined. And then it's just like that first hour at the computer, you know, I'd be working on my own stuff. And then weekends, right? I work for a foundation now. Most of my career was as a professor, but now I have what's much more of a day job. So I have weekends a little bit more free. And that would just be my time, you know, and and just learning to really take pleasure in it, you know, was great. Also just writing with other people, you know, for my feedback class, it was like 1,600 words a week. So it's like I always knew I was gonna write 1600 words, gonna make it as good as I possibly could to share with my classmates. And that really, I think was an important part of the ritual. And then moving away from the place where you do your regular work. I mean, I'm just on my computer all day. That's pretty much my job. I'm writing all day. I write emails, I write reports, I write all sorts of stuff.
SPEAKER_01:Yeah.
SPEAKER_00:You know, that was also part of the ritual. And I guess the other, the other thing to say is just how you write. Now, until recently, anything that I was going to write that was going to be sort of like a memoir or a form of writing where I really cared about how it came out, I would write by hand, you know? And wow. Yeah, that most of my career I've done that. I've only recently transitioned to writing kind of first drafts of essays and stuff on the computer, which is making my life a lot easier. It got to a point where I'm writing, so I couldn't do it. Yeah. But yeah, I think that that handwriting, you know, that sort of embodied side of writing historically has been an important part of my, you know, my practice, my ritual.
SPEAKER_02:Are you able to slow your brain down? Because I feel like that's my problem when I handwrite. I I I just feel like my brain was either moving too fast or my hand would start cramping, and then I couldn't understand when I was writing.
SPEAKER_00:Yeah, yeah, yeah. It totally got that way. I think the problem for me, and again, this is like this weird generational thing. Like I wrote papers on an electric typewriter, and that was like a big technology. Right. You know, whiteout, all that stuff. That's true. You had to be more thoughtful about what you had on the draft and yeah, and you know, so when I got a computer, it was kind of like typing into a computer was like already editing, which meant I couldn't move through the thought, right? I'm kind of someone who stores stuff up and then I just sit down and I blurt out the whole thing. You know, whatever I've decided the chunk of stuff is gonna be, I want to write the whole thing in a sitting. And when I was trying to do that just first draft on a computer, I'd just be circling back around the same paragraph for like an hour, right? So I think what's happened is in my job right now, I just spend so much time writing emails, etc. I've gotten so I kind of can type thoughtlessly. I just can dump. Whereas it used to be I was just always really critical of myself as I was typing.
SPEAKER_02:Sure.
SPEAKER_00:This'll all be gone very soon. It'll be like it's like someone talking about back when we had quills, we had to spend a lot of time sharpening them and finding the right size feather.
SPEAKER_02:But I think it's so great for you to know if someone out there is trying to write their memoir, trying to write anything. Okay, if typing on a computer isn't working for you, sit down, try to write it up by end. Maybe that will unlock something differently.
SPEAKER_00:Yeah, yeah, that's that's absolutely true. You know, and I mean for me in college, like sometimes I would really have trouble getting started, you know, not quite writing blog, but writing anxiety. Yeah. It's like, no, I just have to be wandering around campus. I'm walking to the library, and then some words will come into my head. I would just sit down on a bench and then just write a draft of a paper. It's like pencil and paper were really kind of helpful in that way, you know. I think sitting at a computer or a typewriter just felt too formal.
SPEAKER_02:Right. Maybe there's too much pressure.
SPEAKER_00:Yeah, exactly.
SPEAKER_02:Part of writing is also living, experiencing, working through thoughts. But then for me, I always have to have my phone or a piece of paper nearby, but my phone, and I'll send myself text messages. That's my pencil and paper. You should read this text message to myself, Daniel. And it is bizarre. Sometimes I'm like thinking. Who knows? Who cares?
unknown:It's fine.
SPEAKER_00:No, that's kind of been my bridge. I like started using notes. I'm like, okay, this is hard to do, so you can't edit.
SPEAKER_02:Yeah, exactly. Exactly. Also, talk to text has become a good friend because then I really can't just word vomit.
SPEAKER_00:Oh boy, wow. That sounds dangerous for me. I go on and on, as you've seen.
SPEAKER_02:Okay, so you talked about writing anxiety. Did you ever have any moments of writer's block or not really?
SPEAKER_00:In this book, not really. I mean, there were moments of confusion, right? Unlike the other books I've written, you know, I think I'm a fairly okay academic writer. Like I try to write quite clearly, and I've generally had a pretty good vision of what a book is. And my thinking is always like in circles. Like each chapter is kind of its own little essay. And I mean, you've read Beautiful Mystery. We've seen this. The middle chapters are kind of that's my practice. It's like a little circle, a little self-contained thing. But writing a story, oh my God, that's hard. Like something where each chapter is building on the other and seeing what's missing. So it wasn't so much a block, it was more like just moments of um thrashing around trying to figure out how to do it. I mean, in the past, I did when I was trying to write my dissertation, I had like a year of writer's block where I just couldn't get started. I had too much to say, which melt me made me feel like I didn't have enough to say. And it wasn't until I just thought of a good first sentence of a chapter that I was able to start. So I I've experienced writer's block, but I think one of the beauties as you kind of spend more decades in doing this kind of work is you just get kind of shameless, you know. It's like the sort of anxiety that I think I felt as someone in my 30s, you know, you kind of shed that when you get into your 60s. And I think that's been really helpful, you know, in terms of that kind of fear that could be so paralyzing in the past.
SPEAKER_02:I think for me, when you come to understand that there is value in all aspects of the journey, even parts that maybe don't feel like they will be a part of your final paper. I had another author that I chatted with. She threw out a 10,000-word manuscript. Yeah. That's so hard and scary to do, but she needed to do that to get to the next point. And then now she has a memoir published. It's recognizing that there is value in the trash if it becomes trash.
SPEAKER_00:Absolutely. And that's really part of maturing as a writer. And it's also has to do with self-confidence. It's like, okay, I wrote some beautiful sentences, some beautiful paragraphs, and I'm gonna say goodbye to them. But you know, there are more beautiful sentences and paragraphs, maybe from that kind of like faith in the future. Again, it's just the more experience you have, the easier it is to do that, which is the best advice if people want to write, is just just start writing, you know.
SPEAKER_02:Right. It's like anything in life. The more you do it, the more you grow comfortable with it, the more, the more that you'll just start to criticize yourself less and and let it flow. Let it flow.
SPEAKER_01:Yeah, exactly.
SPEAKER_02:Okay, so tell me about the moment when you finished your first draft. Did you celebrate?
SPEAKER_00:Well, you know, this is a rough question because you know, it was like sort of cobbling things together. So I didn't really feel like there was a finishing to it. I did I think that the moment, the moment of triumph, if there was a moment of triumph, was when I figured out what the prologue would be and what the epilogue would be. And those were pieces I wrote separately. I wrote the prologue in a different kind of writing group, something called Field Studio, run by Nomi Stone and her partner, Rose Skelton, an anthropologist and poet and a journalist and creative nonfiction writer. Oh wow. Who are working with academics to help them write more lively, engaging academic prose. So that was where I wrote the kind of prologue about the monk parakeets, right?
SPEAKER_01:Yeah. Right?
SPEAKER_00:But sort of figuring out like that other piece. I thought that was going to be the beginning. I thought the end was gonna be the beginning, the epilogue. It's when I figured out that this is one beat and this is the other, and the birds will fly through everything in their way. It's like figuring that out. That felt kind of like a moment of triumph. It's like, okay, I've got it. I guess the other moment of triumph was, you know, I had a lot of help writing this book. I worked with a couple of different developmental editors. I had delusions of grandeur. I thought I was gonna market it to a trade press book, you know, to trade presses and so on. One of the development editors was like, Yeah, you just don't tell the whole story. So it's like the chapter No Future that was missing in the first version, and sort of writing that chapter and kind of putting the last brick in the wall that also felt like, okay, now I have something I can work with. Um, but yeah, there were just so many drafts of it, Alex. It's like there wasn't, you know, as soon as I finished one, I knew it's inadequate and I have to go back into another one, right? Right.
SPEAKER_02:Well, also it's your life. How do you simplify it down? How do you do that? How do you pick the moments with Millie? How do you pick what you want to say?
SPEAKER_00:And how, you know, yeah, not an easy feat.
SPEAKER_02:And you did it. And and so, okay, the book is in your hands, and you have your publicist sending it out to people like me to read.
SPEAKER_00:Yeah, yeah.
SPEAKER_02:How how has that been sharing this part of yourself with the world? I mean, this is your this is your heart.
SPEAKER_00:Yeah, that's really a great that's a great question. No, it's funny. I mean, you were asking about like throwing things out. You know, one of the things you learn from this kind of writing is you learn craft, right? Which means you have to be close to the feelings. And, you know, I was working with kind of a bunch of other people who are writing memoirs, and some of them are very close to their feelings. I tend to be not that kind of a writer yet, you know. So it's like what's in there is, you know, kind of as much as I think I could reveal. Um, but you know, you learn stuff like not everything that happened is interesting, even if it's really precious to you. Experiences that are precious to you don't actually belong in a book, you know. And from going through all of that, it's funny at this point. I'm kind of like, you know, I'm really happy that people are moved by it and find it engaging. I mean, the best thing that people have told me is like I picked it up and started reading and I couldn't stop. I just read the whole thing, you know, which is not something that happens to books written by anthropologists very frequently at all. I could imagine that. I couldn't imagine. So that's actually all of that is making me happy. But, you know, the thing, and it's not really happiness, it's more just like, I don't know, like feeling emotionally taken by the moment, in that when I was writing the book, um, you know, all of this stuff about like how Millie has led me to question the things that we're taught in our society. About what it is to be a human being, either explicitly or implicitly. Sometimes I felt like, oh, am I kind of, you know, talking about the Nazis? Am I going overboard? And it's just the stuff that's happened in the world. Suddenly it just feels really important to have this story out there. And so, like the publicity thing, I have two reactions. Part of me is like, oh, this is kind of unseemly. You know, it's like self-promotion. That's not really my thing. Yeah. And then my other thought is, what is it? Doesn't work, you know? So it's sort of like, I think like I'm feeding a certain part of my ego. I'm not really happy to be feeding. Yeah. But at the same time, when I think about the fact that for better or worse, this is a very timely story. That makes me feel a little bit better about, you know, just trying to bring it to as many people as I can.
SPEAKER_02:A thousand percent. I'm in the same boat as you. I think what my podcast is, is this beautiful place for women's stories and voices to be heard and amplified. But I hate Instagram. I hate self-promotion. But I get to do it because I love you guys so much. So at least I'm sort of hiding behind y'all.
SPEAKER_00:I'm not like no, it's really anyway. And then it's like you hate it, but then you're like, oh, this is fun. Right? You're like, wait, but I'm not supposed to be this type of person. Yes. The definition of ambivalence, yeah. No. Yeah.
SPEAKER_02:Okay, how did you find the title?
SPEAKER_00:Oh, God. So that is a great story. So I got an NSF Scholars Award when I was first thinking, like, okay, Millie is a book. I didn't know what kind of book, but Millie is a book. And it was an award that allowed me to do some cross-training and psychology and, you know, kind of language development and do some interviews with other families, et cetera. Just a little bit, you know, anthropology things. Um, and when I wrote the proposal for that, you know, I got a title. And I'm very title-driven. Like before I write an essay, I have to have the title. Yeah, it's no.
SPEAKER_02:It's like the key that unlocks it.
SPEAKER_00:Key that unlocks it, the introduction. I have to explain the title. The other side of signs was my title. It's like, it's a much more academic kind of title. You know, what is a sign? How do we come to understand each other through symbols and signs? And what's the other side of it instead of just conventions, right? So yeah, that was my title whole way through. And then I, you know, ended up going with Duke University Press and Ken Whissaker, who was my editor, is like, that's not your title. It's like the marketing people will not buy that. Right. You need to come up with another title. And then it was like, you know, a week of struggle. Pounding your head against the wall. Yeah. Like my husband, who's a fiction writer and I are like, How about this? You know, we send it to Ken. He's like, No, that's not the title.
SPEAKER_02:You're like, Ken, can you come up with the title?
SPEAKER_00:No, and then I come up with titles like, oh, there are three books and four movies with this title. You know, but then it just came to me, I think the point, and I'm so glad it's the title now, because I feel like it really gets at something that's really distinctive about this book and really important about the ethics behind the book, which is this idea that you don't have to understand someone to love them, right? And accept them and make them part of your world. And I think that's just a really important message. So I'm glad I finally hit upon it. And beautiful is probably the word I use most in the book anyway. So you know so anyway, yeah, that's how I ended up finding it.
SPEAKER_02:No, it's a great pairing, and there is there's a there's a visceral reaction to beautiful mystery. You're kind of like, what is the beautiful mystery? What am I gonna learn here? What's right, yeah, it it evokes a feeling in you and it makes you want to pick up the book, which is what the title should do. And then also the cover, which is maybe with memoirs, it is a little different because it's more personal, but usually cover designs, you don't have any say. But I'm thinking you had to have a say with this because this is a photo of you.
SPEAKER_00:Yeah, you know, in academic books, we kind of get away with having a little bit more of a say, you know. In I've written three books about West Papua, which is the, you know, occupied part of Indonesia where I've done research and and I was able to kind of make some suggestions around that. You know, academic presses are very different from trade presses, right? They have a different kind of mission in the world. But Duke, if you look at their catalog, Duke is very spiffy. They have great book design, they have great book artists, you know. I think the book just turned out really beautifully. So, yeah, a suggestion. Um, I have this just very beautiful picture of me and Millie standing together on a deck. We were actually visiting Hawaii with some friends. My personal website has it because I love the picture so much. And so that was the picture I gave to them. And then there was a long discussion with Ken again about whether or not it would work.
SPEAKER_02:But it's great though, because your face is shadowed, but and you can see Millie.
SPEAKER_00:Yeah, yeah, and that was it. It's just Millie is just luminous in this picture, and she's just generally luminous. My daughter is really luminous, and you can tell.
SPEAKER_02:You can tell from her book. Yeah, she's a light.
SPEAKER_00:Yeah, yeah, yeah. I was a little bit like the colors. I like this looks like an Easter egg. I was a little unsure about the colors, but they've grown in me.
SPEAKER_02:So yeah, no, it's it's all good. It really is. It's beautiful. Let's learn more about your light, Millie. Tell me about her coming into your world and then discovering that, like you said, she wasn't hitting her milestones and just that that whole experience of recognizing that life was gonna look a little differently than maybe you had expected it to look.
SPEAKER_00:Yeah. I mean, I guess one thing that's important is that Millie's my second child. My son Ralph was born while I was living in London and applying for academic jobs. And like I said, I was reluctant mother. I'm like, okay, Craig, I'll do this. And I was bowled away by how into my baby I was. Yeah, it's like maybe it's not not everybody's baby, but my baby I was really into. And I was really into being his mom, you know? And Ralph just had this personality, like from the minute he was born, you know, he was just clearly this person, right? You know, and I look at him today, he's still that person. It's just that sort of spark, right? So Millie, you know, well, Ralph was born like when I was finishing my dissertation. Millie was born when I was finishing the draft of my first book. And and it just, I kind of noticed something from the very beginning, right? And I kind of write about this book, and some of it's a little bit like a little woo-woo, you know, it's just the setting of how she was born and just my level of consciousness around her birth was just really different than with Ralph. And then bringing her home and just like that kind of spark like that I saw in Ralph, like that kind of reaching out for the world, it was just really hard to connect with Millie, you know. So early on, I kind of had this weird feeling. And I was also like really chugging, like, okay, book done, coming up for my first review, very career-driven, career anxious, all of that. Yeah, a little bit distracted. But then just when I would really look at her, it's kind of like, okay, well, she's not really making eye contact. Should she be doing that? I mean, babies, typically developing babies, are incredible flirts, right? You know, if you spend time on an airplane with a baby, you know they're flirts, right? Yeah. My daughter was just kind of self-contained. Also, would just get upset for really mysterious reasons, and like all of the things that you think of to do to calm a baby would not calm her. So I had all this stuff going on in my head. Yeah, you know, and I write in the book about like reading the different milestones and like, okay, I'm gonna try to get her to sit up on her own. Right. And telling myself she was okay. Yeah. But then finally she developed an eye turn. And I think Craig and I were each having our own sort of process, the same thoughts, and kind of came together and started sharing them and went to a pediatrician who was like, ah, babies, babies develop at different rates. You know, there's probably nothing wrong with her. Bring her back in a month, you know. And and by that point, it was just really clear not just that her eye turn was getting worse, but that her muscle tone was ridiculously low. So it's not an accident she wasn't rolling or sitting up. It's like she didn't have the muscle tone or muscle coordination to do all those things. So that sort of started us down this road. And, you know, again, I write about this scene in the book, like going to a neurologist and this sort of faith, like you just find the right expert and they tell you exactly what's going on with your kid, you know. And my life with Billy has been an education in the fact that no one knows exactly what's going on with my kid.
SPEAKER_02:Right. She's never been diagnosed with any specific.
SPEAKER_00:Never been diagnosed with anything, you know. You know, it was my 40th birthday. We're going to Wisconsin to see my parents. We go to the neurologist in the morning, and it's like he doesn't give us answers, but he definitely gives us the impression this is not just some passing thing, right? That there is something going on here, and this is really gonna change, you know, kind of your life with your kid. I mean, I think I had a lot of pretty selfish thoughts in the beginning, you know. I'll own them again. I was so anxious about my career. I had such a vision in my mind of what my life would be like, you know. It was like, yeah, you have kids and then they grow up and they're independent, and then you go back and do like a year of field work. I mean, I'm an anthropologist, right? You go and live someplace for a year.
SPEAKER_01:Yeah.
SPEAKER_00:Right. I had all of these ideas about stuff we do. You know, Craig was a management consultant, you know, that's what happened to my bearded Marxist, unfortunately. But I had this faith he would go back to being a bearded Marxist. You know, we lived like church mice, we saved a lot of money. You know, he's like, I'm gonna retire at 40. And it's like, yeah, great. You know, I just had this vision of hiking in the Sierras with our children and all of this stuff. And I had trouble letting that go, you know.
SPEAKER_01:Yeah.
SPEAKER_00:It was really that sort of change in tracks, you know, was pretty hard to come to terms with. And I think my reaction in the early period was just to take all of the therapy at its word, like super seriously, like we are gonna help her catch up. She's delayed, you know. Like I said, I'm an athlete. Yeah, you know, run harder, right? Right. And we will help her catch up, right? So that was, yeah. And what does it mean for my career, you know? Like, yeah, so there was just, you know, yeah, it was a lot. It was definitely a lot.
SPEAKER_02:I read and did an episode on Heather Lanier's raising a rare girl. Her daughter was diagnosed with a genetic condition, but she writes about being made to feel like she did something wrong. She had one doctor say it's either a bad seed. Yeah. Oh, I know.
SPEAKER_00:You know, again, because I didn't really have that much of my ego tied up in the idea of being a mother, it wasn't kind of like I'm a bad mother. It was more like, what the hell? Yeah. Like, how am I gonna deal with this? What am I gonna do? I mean, fortunately, I'm making this sound really bad. I mean, during those early years, I also had like Craig beside me, and yeah, he is a great, great dad, and really kind of approached it like, okay, just need to find out everything we can. What do we need to do? You know, very even keeled, loved his kids, would always love his kids, you know. So I also felt like, okay, I had this partner, you know, even if this is hard for me, it's not like I ever thought I was gonna be the starlet of the mother's group anyway, you know. But yeah, yeah, it's definitely a thing. And again, it has to do with your generation. I think my generation of moms, we were just moving into the moms raise super children kind of phase of the world, right? And my son's a fantastic human being, but this was an issue with him as well. It's like my kids are their own people, they're not hothouse flowers, and so relating to parents who are raising hothouse flowers has always been difficult for me.
SPEAKER_02:Yeah. Well, how was it navigating juggling Millie's diagnosis, uh lack of diagnosis, but treatments and therapies while also having a toddler? I mean, I've got a seven and a three-year-old right now.
SPEAKER_00:Yeah.
SPEAKER_02:It's a lot.
SPEAKER_00:Yeah, it's really interesting, you know, these questions because it's like from this perspective, is like, I just did it. You just did it now. And it was like, this is how I know what I know how to do. But like Millie, Millie was just this, you know, look back at like, you know, home videos of her. She was this just really sweet little thing. You know, she did kind of wake up, she did start smiling, but she was like, You put her down and she kind of stays where she is. Yeah. Not like I'm gonna crawl off and like electrocute myself, you know, like many. That's helpful. You know, and Ralph was just super verbal, just this talkative little thing, and really into his dad, and his dad was really into him. So part of that early phase was just like Craig taking Ralph off for adventures. You know, we the two of them went on a skiing trip in Colorado, they'd go on bike rides. They just Craig in kind of a fit of craziness took up hunting when he turned 40, you know.
SPEAKER_01:So it's like that.
SPEAKER_00:Right, you know, so it's like you take Ralph off and they'd sneak away and carry her on dead birds, you know. So it's Ralph had this other sort of world with his father. You know, so it's just a really different kind of thing, right? Like Millie's needs in some ways are really limiting for families. Like you can't just get out of the house in three seconds. It's like not like everybody's walking, you just walk out the front door and down the stairs. It was like always an operation, sure, you know, with mobility issues because the world is not set up for people with mobility issues. Right. But then the other side of it is there's a lot of psycho-drama involved when you have two talking children that I didn't have to deal with and Ralph didn't have to deal with. I mean, I think about this. Sometimes I joke about this with Ralph. It's like if you had had like a typically developing sister, it would have been really hard on you. You know, it's like really good thing you had Millie.
SPEAKER_02:Yeah, yeah.
SPEAKER_00:Yeah.
SPEAKER_02:Okay, well, let's get to losing Craig.
SPEAKER_00:Yeah.
SPEAKER_02:How old was Millie? How old was Ralph?
SPEAKER_00:Yeah. So Millie turned three in August, and Craig died around Thanksgiving in November. So she was a bit over three, and Ralph was going on seven, his birthdays in January. So yeah, they were young, three and six.
SPEAKER_02:And your world shifted overnight. That was a beautifully written passage, by the way. That was heartbreaking, but it was beautiful.
SPEAKER_00:Oh, well, thank you. It was really therapeutic to do that writing, you know, I have to say. Because when you have a thing like that happen, you know, the stuff they say about flashbold memory, a traumatic experience gives you the kind of memory where every detail just remains vivid. Right. You know, I'm carrying around like those moments in my life and I will for the rest of my life. They're just incredibly vivid. And the feelings, I mean, there may be things in the details of what happened in the weeks afterwards, but I really, really remember kind of how I felt, right? And to be able to try to put that on paper without it being like maudlin.
SPEAKER_02:Sure. Yeah.
SPEAKER_00:Right? Or sentimental, or just to actually really express what was going on.
SPEAKER_01:Yeah.
SPEAKER_00:That felt really good. I mean, I think in part one of the feelings I had at the time was just it was like I mean, you're an you're an actor, right? It was like stepping out of one script into another, you know, without any rehearsal.
SPEAKER_02:That's a great way to put it.
SPEAKER_00:You know, it just the world just completely changed, right? And and then being around people, I mean, two things, just the enormous generosity of people, right? If you haven't experienced something like this, you haven't experienced the full capacity of human beings, even ones who don't know each other that well or whose fates are not that tied up in one another to just come forward and hold each other up. I mean, that was an amazing realization. Again, I'm not a super sentimental person. It's like I'm trying not to do like a Hallmark card, but I will never forget colleagues who called me up out of the blue that day, you know, um, and were willing to sort of enter into this space with me. It was really incredible. The other side though was I felt like kind of like with motherhood, like there's a script I'm supposed to be following. And that's not really, I can't really follow it. Like, you know, I like the whole thing of I think people expect me to burst into tears and run off into a dark room and stay there for the next three months. And it's like, that's not the way I responded. The way I responded was, what now? You know, it was like, okay, in the absence of any guideposts, like, okay, I'll make a list. Surely there are some tasks that I can throw myself into. And that's kind of what I was doing, you know. So it was a very, it was a very weird period, you know. Yeah. And again, like I said, I think that there are scripts and maybe there are commonalities with the way that people deal with this kind of an event in their life. But one of my main feelings is like, I'm just not doing this right. Right. Which was very yeah, you know, balanced by I'm so grateful for people who don't seem to care. They're still being really nice to me. You know, yeah.
SPEAKER_02:We should all reflect on like what our expectations of grief are from ourselves, from the people around us. Like, what why does it have to look any certain way? Right. As long as you actually are allowing yourself to grieve, because I think there is the flip side of that where do we even feel comfortable allowing ourselves to grieve? And you were a mother of two, a daughter who needed to stay consistent with a certain way that her life was going at this point.
SPEAKER_00:Yes.
SPEAKER_02:I mean, you did just have responsibilities, you weren't able to melting flower.
SPEAKER_00:Yeah, and I did. I think I found my ways to do it. Um, I mean, a couple of things were lessons to me that I've tried to carry forward when people around me have experienced this kind of loss. And one of them is I really wanted to talk about Craig. I really wanted to talk about him and, you know, continue to talk about him to his son, right? I just really wanted to to share who he was, you know, and that was really, really important to me. And I needed really time alone, right? So it's sort of like I cried, but I cried in the car by myself. Yeah. I also really needed to do stuff that was just being in the moment, being in the process. So, you know, I took a watercolor class. I've done watercolor since I was a teenager, but really like prioritized myself it, threw myself into it. I went through all of our pictures. I did a bunch of like the domestic stuff that he did. He was like this incredible partner. He made most of the money, he cooked, he shopped, did the finances. It's like I was kind of ornamental, you know. So I threw my well, what Craig bought all of these albums and hadn't put pictures into them. I just put pictures in albums. I did a bunch of stuff like that. And then I was with my children doing domestic things. And that was also, it was elegaic in this kind of really, you know, sort of moving way, right? So yeah, my forms of grief were not maybe what people expected, but they were there. And then at the end of the year, I needed to go into therapy because you know the other side of it. And I think that's something that's really, you know, beautiful in Joan Didion's book about losing. You know, her husband and then her of magical thinking. Yeah, it's just like you really think the person is going to come back. And that's you know, the process is just unfolding. It's constantly learning that they're not coming back. Um, yeah.
SPEAKER_02:Sorry, I didn't mean to be No, I I mean these are the parts of the conversations that I love because this is a stuff that people can resonate with. They may not be able to resonate with your motherhood journey, but they can still resonate with so many parts of your life. It was heartbreaking when you wrote about how it hurt you so much that your daughter wouldn't remember Craig.
SPEAKER_00:Yeah, yeah, absolutely. It's just it's interesting. And, you know, I think I captured this okay in the chapter on, you know, Craig's death. It's like all of this stuff that was just completely surreal was happening. And I'm like with Ralph, and I'm worried Ralph witnessed his father dying. It's like I'm with my kid, you know, and thinking about him having a chance to say goodbye, all of that stuff. And then for Millie, it was Millie was just there with her caregiver, right? You know, and then realizing it's like, oh my God, Millie. I had not been thinking about her in the throes of it. And then I started thinking about her. And it was just really, it's just really sad, you know. It just made me really sad. Like how, you know, I can talk about Craig to Ralph and I have nonstop. He's 28. We still talk about his dad, you know. But with Millie, how was I gonna keep her dad alive? He was so important in her life, right? You know, and so yeah, that was, you know, that was probably the hardest part of the experience is just what does this mean for Millie? And it wasn't just an enormous part of it, which is how am I gonna deal with this alone without this really wise, giving, compassionate partner who's suddenly gone? Yeah, it was also like, how do I keep him alive for her, you know? And it's like, will she miss him? Well, I know. What will this mean for her? You know, and yeah, like I described, she stopped sleeping, she cried, she went through a period that was rough right after he died. I don't know what that had to do with, but I felt like maybe it was because he was gone, maybe it was just because things were different and she had the sense of it. I don't know. But yeah, I think about that a lot. My mom died in 2020, you know, and she was one of the people in memory care who got COVID. She had a stroke. We don't know if it was connected to COVID or not, but yeah, that was when she passed away. And my mom was great with Millie. I mean, some of the babies I had to kill to make this into a book were discussions of my mom and my dad, right? And sort of her death, it just makes me really sad when I think about that in relationship to Millie, right? You know, it's like Millie has lost her grandmother, and I can't really talk to her about her grandmother, you know, I can't really share stories about it. Then you have to find other ways to keep people alive, I guess.
SPEAKER_02:Yeah. Let's get into life with Millie, you navigating forward, moving forward, and figuring out this new way of communicating or what communication even means.
SPEAKER_00:Yeah. I mean, this is something, you know, going back and thinking through that period, I just always assumed she would talk someday, you know. We were all worried about her walking. It's like we just took for granted she would talk, and then time went on and she didn't, right? But then I think something I've written about academically, but I think I'm able to write about it in the way I do because I've experienced it myself. It's like having this strong longing to make a connection with your kids, right?
SPEAKER_02:Yeah.
SPEAKER_00:It's like this being who used to be in my body. I mean, I want to be like a biological determinist, but she used to be in my body and now she's out here. But we have this bond. Yes. And her not making eye contact, you know, it's still something. It's like you see her looking out of the corner of her eye at someone, you think she's looking at that person. But if you're that person, she's kind of looking at you. She's kind of not. She uses her peripheral vision, right? Which makes it really hard to tell if she's paying attention or not. But then her hand will reach out and she'll like touch your touch your hand or or you know, stroke your clothing or or pull on your zipper. It's like she knows you're there, but she doesn't indicate it in the ways that we're kind of taught or socialized into accepting and accepting, right? So the moments of connection with her, you desire them, so you get curious and you seek them out. And then you find them, and you have a moment when she is looking into your eyes and you're both laughing. It's just like it's like a drug. Oh my god. It's so pleasurable. Yeah that you keep trying in the long run. Yeah, you're like, what can I do? Yeah. It's like, ah, this is so great, you know. And I think all of us, you know, I mean, she has six caregivers now. She just has this really great team of people who are with her. And I think we all have our own ways of connecting with Millie. And she's taught us to be really curious about other people and just see these things like the way we move our bodies together, our body language. You know, there's so many things in the ways that people interact that just fly under the radar when we're just focusing on language. Um, I think Millie is really kind of great in teaching us this. Yeah, and I mean there's a point in the book. I talk a little bit about, you know, what speech therapy was like for her. And I don't want to cast shade on any of the therapists who've worked with her. This is like super virtuous work, but you know, they're definitely models of special education which are all about like, let's make disabled people as much like us as we possibly can. And kind of know where that comes from if you think about the history of eugenics and the way that disabled people have been treated who don't act like everybody else. So, you know, you can see that. So a lot of it was like, okay, Millie, let's see if you can consistently make choices between two symbols, a preferred object, a dispreferred object. And it was completely random, you know, and some of the stuff they did was contingent on her having hand-eye coordination and regular vision, which she doesn't, you know, there's just all sorts of craziness. But finally, you know, in her adulthood, we, you know, met up with a speech therapist who was like, I'm just gonna watch Millie and look at the way that she's kind of reaching out. And it's like, wow, she's really creative, you know, and I love that. It's like instead of a flawed communicator, she's a creative communicator. Yeah. You know, what a great idea. I also talk in the book about an important movement, you know, among disabled people and their allies around discovering sort of, you know, creative new sort of non-traditional modalities of communication. And for people who have motor issues, who have sensory issues, you know, this is something controversial, and especially there's psychologists who've kind of made it their career to critique this kind of thing. There are others who are like doing research that's showing that it's valid, right? People who might present like Millie actually, if you can find the right modality, are totally capable of language and of communicating and of writing poetry. I mean, there's a long list of people who have become writers by way of these sorts of new systems of communication. And one of the chapters is about exploring one of them with Millie, right?
SPEAKER_02:Yes.
SPEAKER_00:I'm totally, it's very important. And this is where mystery is really important because I think sometimes as a parent, you know, you may feel this as a typical parent too. It's like everyone assumes you understand your children completely, and you're like, hey, I'm just trying to get by. I don't know what the hell's going on.
SPEAKER_02:That's what like I loved about your book so much. We're all flawed communicators. You when your friend sighs, you're like, Are you mad at me or are you just disappointed that you didn't see a blue bird flying by?
SPEAKER_00:Yeah, it's just it's crazy, you know. So but I think it's very important with people like Millie, for parents in particular, who are given so much power over their lives, right? Basically for all of their lives. I'm her medical conservatorship. I had to do that so people at Medicaid will talk to me on the phone. It's like very important for me to maintain the position that I am curious, doing my best to understand Millie and what she wants and what's in her best interest, but I ultimately cannot know the totality of that. And I had to hold open the possibility of revision and the possibility of other people understanding her better, right? So and I think that's important for all parents. There is an authority of parenthood that can actually be quite dangerous to people. So especially to disabled people. Yeah, you know, yeah.
SPEAKER_02:There's a rigid is it rigidity or rigidness?
SPEAKER_00:Yeah, rigidity probably, but you know, whatever.
SPEAKER_02:There's a rigidity that can really be a hindrance to people and to children. It's about, like you said, staying curious as opposed to having these rigid expectations. And you just you portray that so simply and easily in your book. It just feels like, yeah, this is the way we should all be parenting. We should all be living, meeting people where they are, not projecting our own expectations of whatever.
SPEAKER_01:Right.
SPEAKER_02:And I love that you, like I said, you make it so accessible to us, regardless of if we even are parents, regardless of if we're typical parents or have children in rare bodies or able, you know, it's there's something for everyone here to learn at the end of the day. Communication goes so much past just verbal talking to one another.
SPEAKER_00:Absolutely.
SPEAKER_02:So we have to be open to that.
SPEAKER_00:Absolutely. Yeah.
SPEAKER_02:Now, how do you think being an anthropologist has influenced your parenting in general and and also how you've shown up for Millie?
SPEAKER_00:No, it's so funny. It's like I didn't, you know, I didn't live like playing to be an anthropologist. I love being an anthropologist. I really love our field, which is good because I'm the president of a foundation that supports anthropologists. So it's good to get into it. That is good. It's also, I mean, there's all sorts of things about my field that no one should be proud of, you know. But I think where it is now and where it's going and the kinds of curiosity and imagination and commitment, you know, like people are really coming to the point where you just don't go in and like turn people into lab rats and write your dissertation and then get your nice job. It's like you actually need to be in solidarity with the people who make your knowledge possible. All those things I really love about what's happening in anthropology now. Thanks to the great people who are coming into the field. So yeah, you know, all in favor of being an anthropologist. And it is quite fun being a mom and an anthropologist because we have these like kind of two tracks we're always on. You know, when I introduce the book, I talk about my daughter-in-law, Sophia Lombrellia, has this thing called the dessert stomach that she's taught me about. Like your dinner stomach is full, but your dessert stomach still has room.
SPEAKER_02:I told that to my parents all the time growing up. I called it a dessert capsule. So I'm right there with her.
SPEAKER_00:It's like cows, you know, whatever. Yeah. Um, so it's like anthropologists have anthropology stomachs. It's like we can be in the midst of something that's very engaging personally. We're really immersed in it. And yet we also have this little like side of our brain that's like, oh, isn't this interesting? How does this compare with this? How's this like that? What's the broader context? So a story that got cut out of the book was like when I was in London and you know, Ralph was a baby, and I'm like off in the pram. I got stopped by a reporter, you know, with a camera crew on the BBC, and there's like research just came out showing how much it costs to raise the average baby. What are your goshness? And I talked about capitalism, and I talked about, you know, the anxiety that, you know, popular culture creates for parents. I just did this whole like kind of anthropology rap. And then I went off and bought a, you know, baby monitor. Because you need one. Exactly. You know, so it's like, I think we're we're in situations, thinking about them as situations at the same time and kind of toggling back and forth. And again, what I was just talking about is just an emerging idea of the ethics of the field is yeah, you're toggling back and forth, but you also need to toggle back and recognize that these are real relationships, right? That have obligations, right? So it's like you're immersed in the lives of the people who make your research possible, and that has lifelong effects, right? So yeah. So I think being an anthropologist is just like it makes everything more fun, Alex.
SPEAKER_02:You know, it sounds like it. You did write in your book that your relationship and experience with Millie made you revisit or rethink the things that the field of anthropology was was trying to say was fact almost, maybe.
SPEAKER_00:Right, right, right. I mean, I could go incredibly nerdy on this, but I will try not. Two, one of the things I love about anthropology is like we're kind of taught to take nothing for granted. That's one of the sort of ethics of our field. You know, like I said, I was interested in everything. I was really interested in how did stuff get here? How does it work? You know, so physics was my favorite class in high school. You know, it's like getting down to the roots of things, you know? And and I studied at Cornell with a very brilliant, somewhat idiosyncratic teacher who was a big follower of the fancy French philosopher Jacques Derrida. I mean, if you ever want to hear people making fun of academic writing, they're always like trotting out Derrida, who I think is a great writer, by the way. I don't, I don't abide by any of that, but anyhow, um Yeah, Jim Siegel. Yeah, and so I knew nothing about anthropology. The first class I took with him had a requirement of reading knowledge of Melee, the colonial language of Indonesia. It was crazy, you know? And then the next class I took with him was called Myth, Ritual, and Sign. And it was just reading a lot of foundational philosophy and social theory around how something like a human subject, a human orientation to the world becomes possible. A lot of that was kind of about how it becomes possible to have a convention. You know, if you think about language, it's a series of conventions. We, because of the particularities of where we're born and grown up and the experiences that we have, when I say tree, it calls to mind something in your mind, right? Right. If you didn't speak English, it's just a sound. Yeah, right. You know, this idea that language is incredibly important in how it becomes possible to have an experience of yourself. It's the stories you're telling yourself, but it's also the way it's coming from outside, that these things that we think are so intimate to ourselves, which is one of the things that's great about writing a memoir, is like it's supposed to be like dumping out the stuff that's so intimate to yourself, but you have to have craft, right? You have to use words. It's mediated, it's controlled by the genres of self-expression that will allow what you see recognizable to others, right? All of this stuff about language is so deeply seated within the way we think about what it is to be a human being.
SPEAKER_01:Right.
SPEAKER_00:And it's not surprising that many cultures around the world, it's like it's not just long traditions of Western philosophy, like going back to the Greeks, right? It's like man is the talking animal, man is the rational animal. Right. You know, it's like in a lot of places to become a human is to become a speaker, right?
SPEAKER_02:So then what happens when language is taken is taken away or doesn't exist?
SPEAKER_00:Well, there's actually a bunch of things prior to agreeing upon a convention that are happening all the time. And that's actually, you know, that chapter, it's not it's critiquing myself. It's not necessarily like I'm turning away from everything I learned, because I think that was part of what I was learning from Jim, that there is something outside of language. It's hard to use language to talk about it. I think my book is a long effort to use language to talk about it. So it's like in that sense, I'm kind of leaving it behind. But it's like, first of all, the idea that there is another in front of you, right? The possibility that you could even share an experience with someone else. Like, how does that become possible? And what are all of the embodied ways in which it becomes possible to share experience prior to actually using words? Yeah. I just think that's really interesting, you know? And I think it's also just really important because on the one hand, it seems really innocent. Oh, yeah, of course, humans use language. At the same time, it's been used as a way of excluding people from, you know, the basic, you know, privileges and duties that come with being a member of the species, right? It's like, and this is the dark history of anthropology. Anthropology, what makes us human? Well, a lot of time was spent by early anthropologists, you know, looking at certain people and saying, no, those guys are not human, you know, right? Or our all of our political systems. You look at the people who created democracy, democracy totally worth defending in these times. But if you look back at these 18th century thinkers, it was like, yeah, rational, critical debate. And they meant like getting the men together in their coffee houses, smoking their cigars. It's like the people who are capable of talking rationally, didn't include women, didn't include black people, didn't include indigenous people. That's right. And really didn't include disabled people. So yeah, so there's that whole side of like language. I guess the other thing I'd say that isn't in the book is I'm kind of you know jumping around a little bit, but someone whose work I really love is the historian Dagmar Herzog, who writes about Germany, and she has a few really beautiful recent books out. One of them is called The Question of Unworthy Life, and it's about the euthanasia killings in Germany. It's like people don't necessarily widely know this, but the T4 program, which basically killed people like my daughter, that was where they really got those gas chambers warmed up, right? They used gas chambers on disabled people first, and then they used them on millions and millions and millions of Jewish people, right? So and the kind of logic that justified that was based in very much shared sorts of ways of thinking, talking, doing things in the United States, England, throughout Europe. You know, another recent book Steve Unwin has written called Beautiful Lives, and he's, you know, he's a theater director, literary scholar, you know, like Virginia Wolf. Yeah, these people, we should just kill them. I mean, it was very, very common for people to think that people who are not kind of like up to the mark of what a, you know, well-engineered human being should look like, someone who could really contribute to society, we should just get rid of them. It's a way of saving money, et cetera, right? And anthropology was part of that story. I mean, in America, we American anthropologists, there's a long history of like pat ourselves on the back. We had Franz Boaz who like did studies to refute the eugenicists and the race scientists. And one of the things that came out of this is this idea of the psychic unity of mankind that, you know, people may vary across the globe in terms of their physical appearance, but we all have the same brain, right? Yeah. And I think that created some problems, right? And you even see it in popular writings about eugenics in the US, where, you know, there's a lovely book that's, you know, on Carrie Buck, this woman who was sterilized with the approval of the Supreme Court. And the whole point of the book is to show that, oh, Carrie Buck was really of normal intelligence. She didn't deserve to be sterilized, which is assuming that people who were not deserved it, right? So I think that anthropology needs to be able to grapple with these forms of difference that we've kind of like, oh, those things don't exist, right? You know, again, you look at civil rights battles, et cetera. It's always like, we are capable, you know, we pass the litmus test. Whereas really what makes us human is that we're social, right? We're social, which means you can't like look at an individual human, like pluck any of us out of our social context and we're completely non functional, right? What makes us human is that we have a world that can support people like my daughter, right? My daughter's like one of the most human people out there. There, if that's the way you're thinking about what humanity is. So just really moving away from these ways of thinking about capacity, which I think for very good reasons, you know, anthropologists embraced. But this is a really good moment to think about, you know, what actually, what quagmars have we stepped into by kind of playing that game?
SPEAKER_02:What if we're human simply because we're here?
SPEAKER_00:Yeah.
SPEAKER_02:Oh gosh, Daniel, I feel like I could talk to you forever. I don't want to take up too much more of your time because I know that I kind of booked an hour of you. But this was a mic drop moment for me in your book. So I wanna, I wanna read your words to you. You wrote, Capitalism does such a poor job of valuing the work that really matters. Neoliberalism has ripped huge holes in the safety net and impoverished programs that remain. The savagery of the immigration system feeds the gig economy. Corporations profit from their employees' vulnerability. It's what keeps people on the job. Sexism mistakes labor for destiny and skill for instinct. Racism is the linchpin that holds the entire structure in place. Soon our computers will be writing our novels. They're already driving our cars. At least for now, care for my daughter and others like her is something only living, breathing humans can do. I do feel like your book, also at its core, is advocacy. Yeah. Right now we're in a very dark time. We have a president who just used the R word last week as an insult.
SPEAKER_00:I miss that, but there's so much to choose from.
SPEAKER_02:There's so much to choose from. Exactly. Talk to me about your fight for our society to value lives like your daughters and also support lives like your daughters.
SPEAKER_00:Well, part of the fight is to support the lives of the people who care for her. Yeah. You know, and that's actually what I feel the most sort of fired up about because Millie's life is pretty wonderful right now. You know, she's got a mom with a great job. We live in a great house. It's a great community, great caregivers. I have the resources. Like I said, we live like church mice, we save money. Craig took out an extra million dollars in life insurance. I've lived pretty frugally. You know, we're gonna be okay, right? Yeah. But a lot of people like Millie are not gonna be okay. And the people who care for her who maybe have loved ones like Millie are not gonna be okay. I just feel like, I mean, like I said about publicity, it's kind of like, ooh, it's a little bit icky. Writing something this personal as an anthropologist, you know, again, given the width of exploitation around the way we engage in our relationships. I mean, you gotta be honest about it. It's like, you know, Millie didn't ask me to write this book, you know, and the book is not, I mean, it's about her, but it can't be about her. It's about her impact on me and people around her. Um, yeah. The one way I can live with this is just like, how do I kind of turn this into a message that maybe people will hear? So there's some very, very specific things that are going on right now. Immigration, the deportations of people, including people with green cards, people with permission to be here, people who are citizens, but people who are non-citizens, right? I mean, let's remember why it is that people are here? It has to do with US foreign policy over generations, right? It has to do with climate change, which people in the United States are more responsible for than anyone else, right? It has to do with parts of the world not becoming livable. It has to do with these forever wars we seem to keep starting, right? And it has to do with the fact that, and I always like hate this kind of excuse, but you know, there is this thing. It's like, yeah, people don't want to do that kind of work, right? Because it's deeply devalued. And that's sort of like the racism that feeds into this, the sexism that feeds into this, heaven forbid, I should have to do that kind of work, right? So really our care system is really dependent on opening borders, not closing them.
SPEAKER_02:Right.
SPEAKER_00:Our population is aging worldwide. There are gonna be more and more people who, if not exactly like Millie, are in the same camp who need people to care for them. Yeah. And like, what the hell are we doing keeping people out? It just is crazy. And it also is just like a devaluation of things that are like the best in our species. There are lots of things in our species that are not admirable, right? But our ability to reach across boundaries and touch one another and make each other's welfare our business, you know, and just have the imagination to imagine what it is to be someone who's not yourself. It's like these are really important muscles for the species to continue to exercise. And it just really bothers me that this is the case. So long-winded the immigration things and then the cuts to Medicaid, you know, and if you talk to, you know, people, you know, who are supporters of the administration, and you know, and you'd have from time to time, right? It's like, yeah, but we're not talking about your daughter, you know, because then, I mean, unless they're like Trump, right?
SPEAKER_02:Yes, right.
SPEAKER_00:Openly eugenicist, you know, they might be like, Oh, yeah, I have a friend who has someone like your daughter. It's like, no, of course not the really truly needy, you know, right in tyranny cases. But they don't understand that this is a system, right? It's a bureaucracy.
SPEAKER_02:Yeah.
SPEAKER_00:And when you go after her caregivers, you're going after her.
SPEAKER_02:Right.
SPEAKER_00:And when you fight fraud, you put up bureaucratic roadblocks to her and to people like her. You create long waiting lists to get services. You create situations like in the LA fires where the father and the son, son had cerebral palsy, the father was an amputee and wheelchair user. It's like, why the hell were those people alone in that house? It's because the state was not providing them with support for the care that would have protected them and saved their lives, right? So it's all of these things are really worth getting up in arms about. I mean, it was bad enough in normal times. It's just like I really feel like we need to fight this. And again, I'm talking too much, so you can cut me off. But you know, I've been on the radio a couple times. I was on 1.8 twice. I was like super grateful for that. The first time I didn't get the questions ahead of time. So it was a little bit like being dropped on a stage with a bunch of professional ballet dancers and trying to keep up with them. But, you know, they were like, oh, we want to talk about how hard it is being Millie's caregiver. And then the second was we want to talk about the financial burden of being Millie's caregiver. It's like, my life is beautiful. You know, it's like, I don't think taking taking care of Millie is not my hardship. It's like living in a world that hates people like her and hates the people who her life depends on is the hardship. You know, it's like that's what I want to talk about. And I'm just happy that this book gives me a chance to explain something about how this life that people think would be a nightmare is actually not. Right. I'm happy to have that opportunity, but also to have this opportunity to just like say, and here are the conditions that make this possible, and here's why they're impossible to achieve for a lot of people, and here's why they're incredibly fragile and now directly under threat.
SPEAKER_02:And I think that's exactly what you do. You have all of your readers reflect on what communication is, what we're placing value on, money versus human life, human happiness. And I completely agree with all the points that you made. And I I really want to emphasize I mean, when people read a memoir like yours and they're like, that's not my experience. So I don't have to worry about it. But at any point in our lives, we we can become disabled, accidents, disease. And also, as you said, with an aging population, you will need a caregiver at certain point in your life.
SPEAKER_01:Yeah.
SPEAKER_02:So it's like you can escape the system that a lot of people are trying to break down.
SPEAKER_00:Absolutely.
SPEAKER_02:And it is worth the fight. I completely agree. Completely agree. So if you have any organizations that you love, you know, if there's someone like me where it's like, I don't really know how to help besides vote, obviously a certain way.
SPEAKER_00:I mean, I will like give one shout out. There are lots, but communication first. Okay. Yeah. Okay. Great.
SPEAKER_02:And we'll link that information in the show notes. Yes, we will.
SPEAKER_01:Yeah.
SPEAKER_00:Yeah.
SPEAKER_02:Okay, Danielyn, let's wrap this up. This is the question that I ask all of my authors. How do you stay hopeful today?
SPEAKER_00:Well, like I said, it's one of life's like, you know, really bad jokes that you actually will get old. You know, so I'm kind of tempted, like, young people, give me hope. But what really gives me hope is like at least once a week I walk down to Seabright Beach and I throw myself into the ocean. I don't stay long, but I just get cold waves and they come out and I lie in the sun, and that gives me hope.
SPEAKER_02:I love that. Good for you. I have tried cold plunging. My husband was really into it for a while. Not my jam, but go along with your bad self, Daniel.
SPEAKER_00:No, not my partner's jam either, but there you go.
SPEAKER_02:Thank you so much for joining me today. Like your memoir. Our conversation was insightful, educational, and lovely. Thank you for sharing your and Millie's stories. They're more important now than ever, like you said. I just feel so grateful to be a part of the amplification process of your memoir, Beautiful Mystery.
SPEAKER_00:Thank you, Alex. It's been really fun to talk to you, and I'm really honored to have this platform. So thank you so much. Doing what you do. Thank you.
SPEAKER_02:I appreciate that. Okay, well, have a wonderful day.
SPEAKER_00:All right.
SPEAKER_01:Thank you. Take care.
SPEAKER_02:Bye. Bye. Thank you all so much for listening to today's episode. If you enjoyed my conversation with Danalyn, I highly suggest the episode on Heather Lanier's Raising a Rare Girl. My cousin and I discuss Heather's memoir and my cousin's own journey through advocacy for her daughter. I'll link how to buy Dana Lynn's book in the show notes. And next week we're back with our final book of the year. With our final book of the year, Katherine Johnson's My Remarkable Journey. This book was. My friend Kate joins me to discuss the incredible woman behind. My friend Kate joins me to discuss the incredible woman behind. Who was the inspiration for the movie Hidden Figures and was one of and was one of the people responsible for helping land men on the moon and return them safely. It's a joyful conversation and the perfect way to end the year as we all reflect on our own journeys this year. Until then, take care, be well.
