Fall Books 2020
9/25/20 - Do you need something to read (and take your mind away from doom-scrolling)? We talk with Nessa Rapoport about her novel Evening and Alice Wong, editor of the anthology, Disability Visibility.
We're also reading (or re-reading): Zadie Smith essays, NK Jemisin's Broken Earth trilogy, Angela's Ashes, and Parakeet by Marie-Helene Bertino.
Transcript below.
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CREDITS
Producer: Gina Delvac
Hosts: Aminatou Sow & Ann Friedman
Theme song: Call Your Girlfriend by Robyn
Composer: Carolyn Pennypacker Riggs.
Associate Producer: Jordan Bailey
Visual Creative Director: Kenesha Sneed
Merch Director: Caroline Knowles
Editorial Assistant: Laura Bertocci
Design Assistant: Brijae Morris
Ad sales: Midroll
LINKS
Disability Visibility edited by Alice Wong
Evening by Nessa Rapoport
Parakeet by Marie-Helene Bertino
TRANSCRIPT: FALL BOOKS 2020
Aminatou: Welcome to Call Your Girlfriend.
Ann: A podcast for long-distance besties everywhere.
Aminatou: I'm Aminatou Sow.
Ann: And I'm Ann Friedman.
Aminatou: Hey Ann Friedman!
Ann: Hey! I almost jumped in to be like "Hey you're Aminatou Sow!" [Laughs]
Aminatou: [Laughs]
Ann: On today's agenda we are talking fall books and we have two special guests: Nessa Rapoport, author of the novel Evening, and Alice Wong, editor of the anthology Disability Visibility.
[Theme Song]
Ann: I am very excited to talk about books with you today because we're not talking about our book, we're talking about other people's books! I love other people's books. [Laughs]
Aminatou: I know! God, doesn't it feel so good not to talk about your own book?
Ann: Listen, I love and am honored that people want to talk about our book and I do love our book but I am so ready for other people's books, OPB.
Aminatou: Oh my gosh, I'm sick of her. Okay.
Ann: Tell me what you're reading. Tell me what you're reading.
Aminatou: Ann, I am trying to read less and watch more movies right now which is such a different mode for me as you know.
Ann: Mm-hmm.
Aminatou: And it's been -- like the TV watching has been very satisfying. The reading though has been very, very, very sparse since we released our book but I am revisiting some older Zadie Smith tomes. On my bedside table right now is Feel Free. We love an essay collection and I am also re-reading Angela's Ashes because a very special teenager in my life is reading it and I needed to have something to talk about and I realized I had not read that book since like high school and actually it still slaps.
(2:10)
Ann: I am going to be honest and tell you I don't think I've ever read that book.
Aminatou: Really? It was such a big, mythical part of I feel like my high school experience.
Ann: I mean definitely I remember it being big. It's one of those books I remember being everywhere. But yeah, I just . . . I don't know. I think because it was like when I was a teenager I was like "Oh, I don't want to read something that's popular." It was like I was that kind of bratty team. So yeah, I missed that window for it and never made my way back. I don't know.
Aminatou: It's just nice to know kids who read because every once in a while they'll spark you to remember something. Another really important teen in my life is reading Twilight and I have never read Twilight but I've watched all the movies and I'm considering reading Twilight. Strongly considering doing it.
Ann: True story is that I read a couple of Twilight books for -- I was writing an article. I can't even remember how it came up but it was for something I was writing many, many years ago, like back when they were big.
Aminatou: The "I'm doing research" Twilight? Are you serious? Are you going to use that on me right now? [Laughs]
Ann: Listen, let me tell you I have . . . many kind of gendered classics I have read because it involved like I was writing something wherein an editor referenced it and I was like I should actually read this book to understand if the way you're referencing it makes sense or not. So that was -- yeah, I read Twilight in probably 2005 or '06.
Aminatou: From what I understand the writing is riveting and I am almost convinced to pick it back up, or to pick it up for the first time rather.
Ann: I think that would be a nice transition back to books for you. [Laughs]
(3:50)
Aminatou: I know! Well you know my feeling right? That if the movie is good I don't need to read the book. So that's usually how I feel. I'm like I'm sorry, someone has done all this beautiful work for me? I don't need to go back to revisit that.
Ann: [Laughs]
Aminatou: But I'm really in a phase of I'm trying to watch more movies because I never watch movies and it's been very nice.
Ann: Well I'm sorry to tell you this is not the movies episode. This is not the fall film episode. [Laughs]
Aminatou: I know! I know! I just wanted to be honest. I didn't want to be one of those people that comes to the books episode and it's like "Here are the seven trendy books I've read."
Ann: Right.
Aminatou: I'm like sometimes people don't be reading. I don't be reading right now.
Ann: Right. Right, you don't want to list the things that you're going to read as opposed to things you have read or are currently reading.
Aminatou: Yeah, yeah.
Ann: I hear you and I respect that. I respect that.
Aminatou: What are you reading right now besides 50 Shades of Gray?
Ann: So my turn my brain off immersive reading is NK Jemisin's Broken Earth series.
Aminatou: Ooh.
Ann: Which, I know, was my kind of late summer break read and I am making my way slowly, I'm about halfway through that trilogy right now. I am really enjoying it and it is also some tough apocalyptic vibes that I cannot engage with all the time so I am simultaneously reading other things. I really enjoyed a delightful novel called Parakeet by Marie-Helene Bertino. It was like a quickie little one-day read that I just was like yes, delightful. I would say it's like a magical realist novel even though I have not read reviews that describe it as such. Maybe it is widely recognized as that. A little bit of magic but rooted in reality was a good mood for me. And I just got but have not started the new essay collection from Eula Biss which is called Having and Being Had and that is just tantalizing me from my coffee table right now and I will probably start that very soon.
Aminatou: I love this for you, reading books. So good.
(5:50)
Ann: [Laughs] I do like reading books now that you point it out. I love it.
Aminatou: [Laughs] Oh my gosh. Well I am excited about today's book episode because I got to talk to the author of my favorite book that I've read this quarter.
Ann: Tell me.
Aminatou: The novel is called Evening. It was written by my friend Nessa Rapoport. Without giving you too many spoilers I will say that the novel is about two sisters and their kind of youthful obsessions. You know, a tragedy happens. There is some grieving that has to be had. You already know this about me, any book that is about complicated family dynamics I am immediately drawn to.
Ann: Family secrets genre? Yeah, yes.
Aminatou: Mm-hmm. I'm like family secrets really is my catnip. I'm just like how close to Atonement can a book be? That's where I want to be all the time.
Ann: [Laughs] On the Atonement scale is this one, ten? Ten being exactly Atonement and being has nothing in common with Atonement at all, where does this book fall?
Aminatou: This book beats Atonement I've got to say.
Ann: Wow, eleven? Wow.
Aminatou: Yeah, I mean Atonement, a better movie than it is a book. But let's focus on Evening right now. [Laughter]
Ann: Back to focus, okay.
Aminatou: Back to this book and back to Nessa. This almost never happens on the show where we go into an in-depth discussion of who the author is but I just really want to give Nessa a shout-out because Nessa is also the mom of my friend Maddie and Maddie introduced us and it was a very, very, very good introduction and a good match because Nessa is truly -- she's someone who, you know, if she had an app every day where she could give you a meditation and just tell you the truth about your life and about how the world was organized you would pay like $100 a day for that. So, so good. Like truly a lovely human who has taught me so much about persevering in your writing and just really keep at it and someone who's really prolific, like she has written another novel; she has written a poetry collection; she has written a memoir. And Nessa really I think has really poured a lot of herself in this novel so I'm excited for you to hear her talk about this.
Aminatou: Let's listen.
[Interview Starts]
(8:10)
Nessa: I'm Nessa Rapoport and we're here to talk about my novel Evening.
Aminatou: Hi Nessa! Welcome to Call Your Girlfriend.
Nessa: Thank you so much Amina, I'm thrilled to be here.
Aminatou: I am so excited that you're here Nessa. It's been such a treat to just read you this summer and I'm really excited to talk about Evening. Can you tell us how long you've been working on this book?
Nessa: You asked the right question. This book was meant to be my easy book because I had written a kind of Avant Garde novel that took me ten beautiful years before this and the first chapter came to me in an instant and I thought the rest would go like that took. In 1990 believe it or not it took me 26 years to figure out what these two sisters were fighting about just before one of them died so they didn't talk again and how to resolve after one of them had died the story of the secret that the living one discovers and needs to upend her idea of her family's story in order to contend with it.
Aminatou: Ugh! Beautifully, beautifully, beautifully put. I was so fascinated that you chose to write about this sister dynamic because in some ways it's a very recognizable dynamic whether you have siblings or not, just very well-trodden territory, and at the same time it is such a richly deep and specific kind of experience for everyone. So I just wonder why you wanted to write about a family through the lens of two sisters.
(9:55)
Nessa: It's funny, this is not an autobiographical novel although as a magpie writer you find you've taken all kinds of tidbits from your life and placed them in various ways in the book. Thankfully I have not lost a sister. I'm actually the eldest of four sisters, very close in age, six years among all of us, and it's a lifelong bond. When I was an editor I commissioned a book on adult sibling relationships and one of the chief points that the wonderful writer Francine Klagsbrun made was no one knows you as long as a sibling besides your parents but your parents leave the world eventually and your siblings ideally are with you.
And I couldn't stop thinking about that and yet siblings aren't chosen; they're given. And we choose our friends and we have a kind of chosen family of women of our 21st century age. But our siblings are there for us to think about, to shape us, and I've come to feel to make our peace about issues in the family that we may not be able to address unless they were in our lives.
Aminatou: Mmm, you are such a beautiful writer Nessa and narratively this story is told so interestingly, like you use the frame of Shiva to make the story unfold. And so I wonder if you could talk a little bit more about that?
Nessa: [Laughs] Well some of us jokingly say Judaism is really good at death. We wish we didn't have that much experience of premature death, and we're not alone in our history but we're sort of uniquely alone in our trauma. But we have the ritual of Shiva which is seven days, really six-and-a-half, where the mourners sit on low chairs and are visited throughout the day by anybody who wants to come and help console the mourner. The mourners do nothing. The food is made and brought to them. The prayer services are organized by others. Drinks are brought to them. They usually don't leave that low chair while there are visitors there. People are always saying "Can I get you anything? Do you need anything?"
(12:00)
And the idea is that people come and offer stories about the person who's gone, ask you for memories especially if they didn't know the person. Of course humans being human there's always people talking in the background, people talking about things that the mourners may not want to talk about because they're really not about the dead person, especially if the person's lived long and it's not as heartbreaking. But what one is supposed to do is be there solely present to comfort the mourners. And when you get up from Shiva after those -- the funeral and then the following days -- you're meant to walk around the block and reenter the world.
The idea is grieving has certain amounts of finite time. The first three days are the most intense in our tradition. The seven are the next. There's a marker at 30 and one says Kaddish for immediate relatives, parents and siblings and God forbid children for eleven months. And then as I learned only in my adult life the tradition does not want you to be in that state of intense grief forever. You're meant to slowly re-enter the world.
I've often thought about people wearing widow's weeds or black in other cultures or in the Victorian era and wish there were a way in 21st century New York to wear some small signal on your clothes after the immediate death just to let people know that when they say "How are you?" you're still grieving.
Aminatou: Ugh, I think about that a lot because you're right it's that initial period of mourning I think so many people recognize and then you're kind of left to carry that grief indefinitely and it's hard. It is really hard to talk about and it is really hard to signal. I also just found -- the novel I think is just really powerful because we don't really have a word for when you are mourning your sibling, you know? There are other kinds of grief that are very -- they're recognized in a way you have a label.
Nessa: Right.
(14:10)
Aminatou: You could be an orphan. And with siblings that just doesn't exist and it left me thinking a lot about, you know, obviously I was thinking a lot about my relationship with my own siblings and how complicated that is when you start making new family structures. And so I would love to hear you talk a little bit about the bond between Eve and Tam and how the stories that Eve told herself in her childhood is not necessarily the story that is conformed to her at Shiva.
Nessa: Yes. We stereotype one another as siblings. I'll tell you something funny Amina: my mother is still alive and is -- or was one of five. She was the only daughter and when she had four girls and no boys her big anxiety was what if we wanted each other's boyfriends? Believe me it wasn't her only anxiety but she was really . . .
Aminatou: [Laughs]
Nessa: She was worried about raising teenagers especially since she had been brought up in the depression where there was a lot of deference to one's parents and they had a lot of authority. My father also by the way was one of three brothers, no sisters, so you can imagine. And what she didn't know was we sisters also polarize each other. If one sister gets an area of expertise the other sister may really not only want to compete but run as far as she can from entering that domain.
(15:45)
What interested me about Eve and Tam was on the surface Tam is the really successful sister. This novel is set in Canada which is where I was born and Tam is an eminent TV journalist, the most well-known national interviewer woman TV journalist, whereas Eve is still kind of muddling through her life. She has her obsessions and fixations. She's writing a dissertation piece she can't quite finish. She's really immersed in the world of British women writers between the wars, in particular a writer named Winifred Holtby who had a very passionate non-sexual friendship, a remarkable friendship with the more well-known writer Vera Brittain about which Vera Brittain wrote an entire book.
What I wanted to do was show in some ways that these stereotypes don't quite obtain. The world thinks that Eve is obviously jealous of Tam but she truly isn't. She's not in denial. She's not. She admires her but she doesn't understand her really because Tam is a driven, ambitious, one point to another person and she has been from her childhood. I give a description of Tam's written daily diary that reads like a soldier's manual: Get up at X, do Y, spend half a second on toothbrushing. That kind of thing whereas Eve is very discursive and she ruminates and she's fascinated by the past which exasperates Tam. Tam cannot understand why Eve just doesn't get going. "Don't you know enough about Winifred Holtby? Can't you finish your PhD?" And I think at one point she says in the novel "If this were me I would already be on the talk shows talking about her." Eve lasts and says "I'm sure you would."
Meanwhile Eve is in love with or half engaged with -- not to, but with -- her half-time boyfriend who lives half the time in Britain and half the time in New York who's a kind of prodigy and who is an academic who's engaged in thinking about reading in these very post-modern theoretical ways. And all Eve wants to do is crawl under the covers and read a novel end-to-end forever.
(18:00)
So there are a lot of contrasts that I put into place. I was trying to go against some of what you might think. And I don't want to spoil the journey that Eve goes on to really turn around how she has to think about her sister from what she discovers during the Shiva but I will say that it's a very naturalistic novel but Tam is always in Eve's head talking. Because that's the thing about sisters: you internalize their points-of-view even if you don't like them.
Aminatou: I mean you're right, they're the people that have known you the longest in a lot of ways. The thing that I was thinking about so much when I was reading this is how . . . like I am someone who is constantly scrutinizing my own memories all of the time, just to an obsessive degree the movie of my childhood plays in my mind over and over and over again. I don't think that's true for everyone but I think that reading about someone who is also just doing that in this very claustrophobic way, is very much in their thoughts and still being able to learn new information or to shift perspectives, that was something that was really . . . it was very illuminating for me. I think you wrote that very, very, very well.
Nessa: Well thank you. I was thinking about sisters and thinking about being women and feminists and I was struck by this irony that applies to my characters as well which is one spends one's entire life trying to acquire and implement agency, a voice in the world, fortitude as a woman, not letting oneself be swayed by mansplaining or the structural issues of being a woman in this world. And yet the greatest lesson life has to teach us is really a kind of humility which I've come to later in my life where I realize I kind of know nothing and I think this pandemic has really shown us that one second after we're sure of something anything -- anything -- can happen. Not only surprises for the bad which I feel braced for but also surprises for the good including may I say our talking together Amina and not just on this recording but in life.
(20:20)
And so I was thinking about that paradox that just as we move through our adult lives as women, becoming more and more able to be agents of our life, the learning we have to acquire is to really understand that it's not all up to us.
Aminatou: Ugh! But why can't it just be all up to us? [Laughs]
Nessa: You know why?
Aminatou: You say that and my inner anxious child just rises up immediately.
Nessa: Well I want to say two things about that. One is don't we all wish we could inject our close women friends with everything we've learned so they wouldn't have to find out the hard way?
Aminatou: Every single day.
Nessa: We can't do it. We have to get there on our own and yet our girlfriends tell us things and ten years later we finally understand exactly what they meant. So we have to keep at it and acquire our wisdom as we can, ruminating. Oh the other thing I want to say is not everybody scrupulously reviews her past every day to see what she can glean. I want to quote my friend Robin who says when we were young we thought everything was psychology and we could easily name what our parents did wrong psychologically but now we know everything is biology and there are people with different temperaments. Not everybody is sitting there as we are wondering all the time "How did this happen to us? Why did I think this? How did I get here?" And the last thing I want to say about that which I know we must share is our siblings had completely different childhoods from ours even if they're very close in age to us.
(21:50)
Aminatou: I mean that is the thing that is so wild to me. I grew up in a home where I think my parents were actually very fair in how they raised us. It was we got punished the same way, we got loved the same way. They were very consistent in the ways they parented us and there are three different humans who emerged from that same household.
Nessa: I so know what you mean. And not only three different humans but our memories are truly different. I can put something out there. We now have Zoom calls among the four of us because of course nobody can travel anywhere these days. I can put something out there, not only a memory I suspect but one I'm very confident happened, and three different sisters remember it differently and I've learned they may be right. Any one of them may be right.
Aminatou: I keep remembering that the first book of yours that I read is A Woman's Book of Grieving, this very beautiful collection of poems and verses that are all trying to capture how insurmountable grief is. And I find these -- you know, that book and your novel are in conversation with each other in the sense that 1) we are truly in a moment of grieving. You are able in this very unique way to give words to the weight of grief and just how crushing it is and also just how inevitable it is. In some ways I'm like anything about grief is straight from the biblical lamentations so, you know, I'm like that is truly the frame for understanding what's going on here. I wonder if you could speak to your writing about grief and why you do it but also how you find the words to really describe something that is so hard to describe?
(23:45)
Nessa: I'm really glad you asked me that. I'm not sure I would've remembered to say this but I have lost four extremely close women friends. The kind that are in what I call tier one, those very few people in whom I can confide everything. The real deal. I lost them all in different -- well two were within two weeks, some from long illnesses, one from a brain aneurysm that happened in one instant, and I felt it was not possible in our culture to really name that particular kind of grief as you mentioned before which is to lose one's close, close woman friends. I have a best friend in the galaxy as you do and we have a deal that we'll jump off a cliff together at exactly the same time.
Aminatou: [Laughs]
Nessa: I don't want to live one second past her not living in the world and neither does she. There's a little poem about that too in the grieving book because I talk about how our children will kind of tolerate each other because the mothers are really close. But the kids, you know how it is? So I'd like to name them. I'd like to say their names which are Linda and Lisa and Mimi and Liz. One of them is a dedication and a set of poems in the grief book and the other three are the dedicatees if there is such a word in Evening because that experience shaped me so much in recognizing that there was no ritual for women to mourn the loss of a very close woman friend and I think there should be. It's actually very hard to create modern ritual. It can be very thin and pink and balloony if you know what I mean.
Aminatou: Yeah.
Nessa: We depend on ancient traditions to help us grieve because they have served people for millennia and they work, to get back to your first question about Shiva. And I do understand especially before antibiotics why traditions don't have many, many kinds of ritual for every kind of loss because there was so much loss. So many infants died, war, all the things we know that one would be grieving all the time and yet in our era I really encourage people gifted at ritual to create for us in a vocabulary of various traditions rituals that work for grieving a woman friend.
(26:15)
You asked about how I found the words? My sister has told me one of them: "Don't say this Nessa but I'm going to say it. I can't cook. I can't drive. The one thing God gave me is language." And like so many women people would say to me when I was younger "So articulate." I actually didn't know what they were talking about because all I did was talk. But now like so many women I always say just because a talent comes as easily as breathing doesn't mean it's not a gift.
And I recognize that this can be my contribution, that I have the words. I was one of those children that read when I walked down the stairs, read in school, read with a book underneath my textbook. My mother would not buy me Nancy Drew books nor would her mother buy her Nancy Drew books so I literally stood in what was then Cole's Bookstore in Toronto and read an entire Nancy Drew. I was the girlfriend that you never wanted to invite over because if I saw that you had a book I liked I stopped playing with you and read the book.
Aminatou: Nessa! [Laughs]
Nessa: Sorry but I did. [Laughs]
Aminatou: No I love that. I love that.
Nessa: I think that's the natural outcome when you're that type of reading, and still reading is my highest passion and I always say when my children were young I didn't hear their importuning if I was in the middle of a book. They had to shake me, "Mom, mom!" as I had to shake my mother. She would say "Hmm, hmm." And I would say to her "You have your reading voice on," and she would say "Oh, that's what my mother did too." So I'm third generation of "Hmm, hmm."
Aminatou: I love this. We would've so been friends. You would've just come over to read all of my books and we would've not talked to each other for hours.
(27:55)
Nessa: Completely. My family's idea of socializing was to sit in the living room each of us reading a book and it didn't have to be a high literature book either may I say often not, more often not, and then look up once in a while and say "Listen to this." Which was always annoying to the other people who didn't want to be interrupted from their reading.
Aminatou: Ugh, I love that very specific memory. I feel like everything is so heavy right now and it was so -- it just felt like a real kindness to get lost in your work for a few hours and I'm just very grateful for your contribution to literature. It's beautiful.
Nessa: Well Amina thank you for loving my words and I would like to say to anybody who wants to read Evening that it's also very funny and that Eve, our narrator heroine, does come to a kind of peace. I think since we've spoken so much about grieving and she is grieving it's also important to say that one can attain a complex peace.
Aminatou: Back to Eve for one second. She is funny, she is messy, she is -- you know, I'm like she's a real three-dimensional lady. [Laughs] You know that experience sometimes of you're reading something like oh yeah, some of this is really heavy or you are very invested in your own like what you are projecting into the novel? Which for me was very much like what is my relationship with my sister? What will happen when I die?
Nessa: [Laughs]
Aminatou: You know, and then having these funny asides or like her romantic life is unfolding in this other part of . . .
Nessa: In the middle of Shiva. [Laughs]
Aminatou: Yeah. You're like okay, yes, this is exactly how life is. Nothing is siloed to one -- you don't get to just be lost in your thoughts and life doesn't just happen and I really just appreciated that.
(29:50)
Nessa: Well I do want to say one last thing even though I've said one last thing which is your book with Ann captures what I call the eros of these kinds of friendships, and I don't mean erotic, I mean eros in the sense that it's a kind of enchanted love affair. I think the real love affair in this novel is between Eve and her sister.
Aminatou: Mm-hmm. And also relationships with sisters are hard. Relationships with siblings and family is hard. Not everyone gets to have enchanted family life so I think it's important to have these complicated narratives about how it can be so thank you so much for coming on Call Your Girlfriend Nessa. Evening is available wherever you buy books, especially at your local indie bookstore. You will not regret reading it.
Nessa: Thank you for having me Amina. It was a delight.
[Interview Ends]
Ann: Ugh, yes, Nessa!
Aminatou: Nessa is the best. Nessa is the best and again thank you to Maddie for the gift of Nessa because we love when friends share the good people in their life.
Ann: Let's take a quick break. So next up I talked to an incredible activist/editor/writer/podcaster/curator, all of these things, Alice Wong. She is the editor most recently of the anthology Disability Visibility: First-Person Stories From the 21st Century. And this collection is really, I don't know, I am enjoying it so much, I am learning so much from it, and there are many essays in it. I would say it veers on the side of shorter and more which I love because it's sort of like dipping into all of these different perspectives on an identity that is incredibly varied and diverse. Yeah, I could not recommend it more highly as the kind of book that you maybe don't sit down and read cover-to-cover but you pick up when you have a minute and read a few of the essays and then put it down then a few days later dip in again.
(32:12)
Aminatou: I have to say I really agree with that because it's like sometimes an anthology is too much and other times it's just perfect. And with this one every single essay I read is obviously in conversation with the rest of them but they're so different and they're told so well by this very unique perspective of a person who is writing and it's been really nice to read a couple of them and have some time to reflect and think and come back to the book over and over again. So I really have to say I am enjoying the reading experience of that.
Ann: Yeah. And Alice Wong because she works in so many different types of media I think this collection feels broad on that front as well. I mean she created the Disability Visibility Project which is a community of people that comes together to share and create and amplify disability media and culture and then she also hosts the Disability Visibility podcast so you can go and listen to that for more stories in a different medium.
And there's something I love, much like you were saying about Nessa working in all of these different genres, I don't know, there's a real depth to this anthology because Alice works in so many different media.
Aminatou: I'm excited to hear you and Alice talk.
[Interview Starts]
Ann: Alice thank you so much for being on the podcast.
Alice: Thanks for having me.
Ann: So Disability Visibility is the title of this community media project you run and your podcast and this new book that Aminatou and I are both reading. I'm wondering why you chose it, if you could talk us back to the beginning where you were like this is the title for this -- the umbrella title for the work you're doing?
Alice: Yeah, so at the very beginning the Disability Visibility project was really just an oral history campaign. I formed a community partnership with StoryCorps which is a national oral history non-profit. And I thought okay, I need a date for this project. It's all about encouraging disabled people to tell their stories. It lead up to the 25th anniversary of the Americans With Disabilities Act which was 2015. I need a hook. I need something catchy that really captures the progress, you know? Just to share advice and to center it on disabled people whether it's disability history, disability stories, disability culture. It's about being physical not just literally but showing up everywhere.
Ann: I was struck reading many of the essays in this collection by the way they describe this tension between the experience of feeling invisible in politics or in the culture at large or in the concerns of even friends and family and at the same time hyper-visible. You know, very kind of othered by strangers when in public or something like that. I'm wondering if you could talk a little about that invisible/hyper visible dichotomy that I read as one of the themes that came up in the book?
(35:55)
Alice: Yeah. There's, you know, all types of disabilities but at the same time we're all living in the middle of society. We're living in a society that was never built for us and a society that frankly does not value or want us. I mean you want to talk about the Coronavirus and this major shitstorm, the dumpster fire that we're in, we see clearly eugenics at work. Certain people are considered disposable and very much this is about brown, black, indigenous people, poor people, older people, and very clearly disabled people. And that is part of the invisibility in terms of just the lack of power I guess or influence, the fact that states and countries and decision makers have -- you know, there are qualms about saying oh, you know, this virus, it only affects high-risk people. It's already -- don't worry about it. There are just those people that will get it and everybody else it's going to be like a bad flu. So to hell with older or disabled people who die. Just, you know, their lives just weren't that valuable to begin with.
(37:45)
And that's part of the invisibility but hypervisibility is very much about the harassment and microaggressions and just a lot of scrutiny about disabled people. You know, so many people speculate on the president's health. Clearly he is a despicable human being. I have nothing but horrible things to say about him. But I don't think anybody should be judged about their mental status or their disability unless the person is to perform something. Just those kinds of rhetoric are vile, ableist language. It's used in politics that we're crazy is something I've learned to not say anymore. These times are really horrible and surreal, and for people with mental health disabilities they are just as harmful. So ableists are just everywhere, so there's that kind of hypervisibility that's very painful. It can be very unsafe but there is this other aspect of visibility which is very much an act of resistance. It's an act of defiance, of joy, of pleasure, and of pride. And I think that's, you know, tied into your identity as well.
Ann: The collection opens with an essay by Harriet McBryde Johnson that was originally published in the New York Times in 2003 and you make reference to this in your intro but I'm hoping you can tell me what it was like for you to read her essay in the Times back then and why you wanted to open the collection with it.
(40:00)
Alice: Yeah, Harriet McBryde Johnson, I really looked up to her. I think she was just a bad-ass disabled activist, writer, lawyer. When I read this piece I just -- so much of what she experienced and wrote about was people who believed that disabled people are better off dead. This is something I experienced. And also just the everyday experiences that Harriet describes with herself with a town when she travels, when she works with her personal chair attendant. You know, these are all things that I deal with in my own personal life. And to see her fight with such searing precision and just wits, it was such a clarity . . . it just blew me away.
You know, she's the kind of role model I wish I had as a teenager. You know, I was just so grateful to read her work and this is one essay that I definitely put at the very first as the first essay because if there is one essay readers should read of this anthology I want it to be Harriet's because it really does give, I think, non-disabled people just a small glimpse of what ableism looks like. I think that to me is hopefully the start. What did you think about it?
(42:00)
Ann: Oh it blew me away. I mean I immediately went to look up more of her work. I had not read her work before I am sorry to say although I've been working my way through what I can find online and have ordered her memoir. But I was struck by the fact that when I went searching for more of her work I noticed that when she died five years after this article was published, the New York Times asked Peter Singer -- who was the person who was denying her humanity -- to write a remembrance of her. And I really like -- somehow seeing that really just underscored every single point that she made in that essay you excerpted. It made me so angry when I saw that.
Alice: I'm so glad that you're angry because that, you know, again it's not disabled people speaking for disabled people. And of all people, a philosopher who has a massive platform, is highly-regarded, there's this guy and he's really famous. People just don't seem to find it problematic that he advocates for the infanticide of disabled people. So I still don't understand how people just don't -- you know, they love his work on essays, and about animal rights, just, you know, all of these interesting thought experiments. Well you know what? These thought experiments, they play out every day to disabled people and this is why we see medical triage guidelines in the time of COVID-19 that de-prioritize people solely on the basis of disability because the presumption underlying having a disability is that your quality of life is automatically less than a non-disabled person. And that's fucked up. That is completely fucked up.
(44:25)
Ann: Yeah. I find myself thinking about a line, I think it's -- it's definitely a later essay in the book. I think it's Leah Lakshmi Piepzna-Samarasinha's essay. They say something to the effect of "Power lying in the ways that disabled people organize that are unknowable to the abled." And I don't know, I find myself thinking about that a little bit, about how the unknowable joys and complexities of living with disability being part of what's happening here and part of the kind of really toxic dynamics that you're describing as well.
Alice: Yeah. And I see it as a real generative force. It is a source of creativity. It is -- you know, when you're living in a world that's... You kind of have such MacGyver stuff, you know?
Ann: [Laughs]
Alice: When you don't have universal healthcare and places are still not accessible, much of that is transportation, you learn how to do things. You know, there's such a wealth of wisdom and brilliance in disabled people, and I think this book just offers a glimpse of it. I think all of these contributors are just brilliant. They're powerful. They have things to say. That to me is what's really important.
(46:00)
Ann: Well that seems like a perfect lead-in to my question for you about another part in your introduction where you specifically call on the publishing industry to be more attuned to the under-representation of the disability community, both among editors and also among the writers they're commissioning. That was very front-of-mind for me as I went to read more from the writers who I discovered through this anthology. I found myself wondering if this book is sort of, "look, see how easy it was for me to find all of these stories? Like here you go publishers, can you do a fraction of this now on your own?" I know it is a direct challenge to them as well but maybe you can talk a bit about that, the challenge to publishing?
Alice: Yeah. I do think that just like every other major field and discipline there's simply not enough disabled people even though, you know, in the United States there's at least one in four people with some sort of disability. You know, to actually press it but probably not willing to disclose, you know? And I think this is another problem in our culture.
Another reason why identity in disability is so important is because ultimately it encourages other people to want to be visible and to be represented. You know, clearly I am all for the reckoning that's happening in the publishing industry regarding race and regarding their poor track record of publishing black and brown writers, indigenous writers, and writers of color. And I think this speaks to just this system is not -- that the publishing industry is overwhelmingly white and does not think about . . . or maybe just performatively they care about diversity but they're not willing to make the changes in terms of sharing that power with other people.
(48:40)
Taking a risk. Taking risks because people are just so stuck in what they think they know, and I think some of this stuff about publishing that's so New York centric, you know? It's about, if you're not in New York City, you don't have access, which I think now, after the pandemic, we see how that's not the case. But also the fact that there's a lot of people who, without these would not be able to be able to write a book, you know? People who don't have to worry about working two jobs, you know? Things like that. I think there's so many amazing storytellers out there that just need more support. The power I'm flexing as an editor is really trying not to think -- trying not to cater or be preoccupied about what non-disabled people expect. So this is why these contributors may be a little bit more challenging, and I think that to me is very exciting. That's where the potential really is because I want readers to be changed. You know, I really want to -- I really want to leave readers wanting to learn more but also really just changed afterwards.
(50:30)
Ann: Well it worked for me. I hope it works for many people who will pick this up after hearing our conversation on this episode and I want to thank you for the curatorial work and for introducing me to all these writers who I now get to dive into the rest of their work, not just the essays in this collection.
Alice: Thank you. And there's also a reading list in the back because I really wanted people to use this book as a springboard. This is not the one definitive book and there are so many other books that are just part of us us, that just help us. Great media out there. There's a really wonderful reading list that will help direct people who want to learn more.
Ann: Awesome. Alice thank you so much for your work and for being on the show today.
Alice: Well thanks for having me.
[Interview Ends]
Aminatou: Wow! That was so great. That was so great and I'm so excited to buy more copies of this book and recommend it to friends. Alice Wong, what a talent.
Ann: Yes truly. All right, I will see you on the Internet.
Aminatou: I will see you on the Internet. Bye boo.
Ann: Bye.
Aminatou: You can find us many places on the Internet: callyourgirlfriend.com, Apple Podcasts, Spotify, Stitcher, we're on all your favorite platforms. Subscribe, rate, review, you know the drill. You can call us back. You can leave a voicemail at 714-681-2943. That's 714-681-CYGF. You can email us at callyrgf@gmail.com. Our theme song is by Robyn, original music composed by Carolyn Pennypacker Riggs. We're on Instagram and Twitter at @callyrgf. Our producer is Jordan Bailey and this podcast is produced by Gina Delvac.