Podcast appearances and mentions of Alice Wong

Canadian politician

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Best podcasts about Alice Wong

Latest podcast episodes about Alice Wong

Burnt Toast by Virginia Sole-Smith
Every Parent Is (Kind Of) Disabled

Burnt Toast by Virginia Sole-Smith

Play Episode Listen Later Apr 24, 2025 36:51


You are listening to Burnt Toast!Today, my guest is Jessica Slice, a disabled mom and author of the brilliant new book, Unfit Parent: A Disabled Mother Challenges an Inaccessible World.Jessica is also the co-author of Dateable: Swiping Right, Hooking Up, and Settling Down While Chronically Ill and Disabled, and This Is How We Play: A Celebration of Disability and Adaptation, as well as the forthcoming This Is How We Talk and We Belong. She has been published in The New York Times, The Washington Post, Alice Wong's bestselling Disability Visibility and more.As Jessica puts it, she originally wrote this book for disabled parents because their stories are not told or centered. But Jessica soon realized she was writing a book for all parents, because becoming a parent is its own kind of experience with disability.There are so many important intersections between disability, justice and fat liberation. One that I think about a lot is how both groups come up against the question: Don't we owe it to our kids to be healthy? Jessica's perspective on these issues is expansive, inclusive and enlightening. I know you will get so much out of this conversation and from reading unfit parent.You can take 10 percent off Unfit Parent, or any book we talk about on the podcast, if you order it from the Burnt Toast Bookshop, along with a copy of Fat Talk! (This also applies if you've previously bought Fat Talk from them. Just use the code FATTALK at checkout.)PS. If you enjoy today's conversation, please tap the heart on this post — likes are one of the biggest drivers of traffic from Substack's Notes, so that's a super easy, free way to support the show!Follow Jessica: Jessicaslice.com. I'm on Instagram @JessicaSlice, I have a Substack where I send monthly notes about Disabled Parenting, and then usually try to get people to read whatever poem I'm fixated on that month.The Burnt Toast Podcast is produced and hosted by Virginia Sole-Smith (follow me on Instagram) and Corinne Fay, who runs @SellTradePlus, and Big Undies.The Burnt Toast logo is by Deanna Lowe.Our theme music is by Farideh.Tommy Harron is our audio engineer.Thanks for listening and for supporting anti-diet, body liberation journalism! This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit virginiasolesmith.substack.com/subscribe

Artist as Leader
Ryan J. Haddad Claims His Spotlight and Access for All

Artist as Leader

Play Episode Listen Later Apr 23, 2025 26:59


Ryan J. Haddad is an actor and playwright whose work across theater and television consistently challenges outdated narratives around disability, queerness and identity. He made a striking Off-Broadway playwriting debut with “Dark Disabled Stories” at The Public Theater, which enjoyed a sold-out, extended run and earned him the Obie Award for Best New American Play. His autobiographical solo show “Hi, Are You Single?” has become a defining part of his artistic voice, touring nationally and earning critical acclaim. Ryan's television credits include memorable appearances on Hulu's “A Murder at the End of the World” and Netflix's “The Politician.”In addition to performing, Haddad is a dedicated writer and access advocate. His essays have appeared in The New York Times and Out Magazine, and he is a contributor to the anthology “Disability Intimacy,” curated by Alice Wong. His creative work and activism have earned him a Drama Desk Award, a Paula Vogel Playwriting Award from Vineyard Theatre and a Disability Futures Fellowship. He is also a proud alum of the Public Theater's Emerging Writers Group.In this interview, conducted just a few days before he premiered his latest solo piece, “Hold Me in the Water,” at Playwrights Horizons in New York City, Ryan reflects on the pivotal experiences that shaped his journey as an artist, from performing fairy tales in his childhood living room to commanding major stages and screens. He speaks candidly about navigating the entertainment industry as a gay man with cerebral palsy, building a career on his own terms and advocating for authentic representation and accessibility in the arts.https://www.ryanjhaddad.com/https://www.playwrightshorizons.org/about/production-history/2020s/2425-season/hold-me-in-the-water

TILT Parenting: Raising Differently Wired Kids
TPP 439: Jessica Slice on What We Can All Learn from Disabled Parenting

TILT Parenting: Raising Differently Wired Kids

Play Episode Listen Later Apr 22, 2025 39:10


Today we're talking about the reality of parenting while disabled. My guest is Jessica Slice, the author of the new book Unfit Parent: A Disabled Mother Challenges an Inaccessible World. A writer, advocate, and disabled mother who challenges the way society defines “fit” parenting, Jessica's work has appeared in The New York Times, The Washington Post, and Disability Visibility.  In this episode, Jessica opens up about the unique challenges disabled parents face, from the obstacles within the process of becoming parents to navigating a world that often feels inaccessible. We also talk about how disabled parents are often excluded from mainstream parenting conversations and why they face heightened scrutiny from Child Protective Services. Jessica shares her powerful perspective on creative adaptation — a mindset that empowers disabled parents to create a parenting approach that works for them, rather than trying to conform to systems that weren't built with their needs in mind. Whether you're a disabled parent, raising a disabled child, or just wanting to learn how to be a more informed and supportive ally, this episode is filled with Jessica's honest insights and practical wisdom that challenge outdated ideas of what makes a “good” parent.   About Jessica Slice Jessica Slice is a disabled mom and author of Unfit Parent: A Disabled Mother Challenges an Inaccessible World. She is also the co-author of Dateable: Swiping Right, Hooking Up, and Settling Down and This is How We Play, as well as the forthcoming This is How We Talk and We Belong, which was co-authored with the late Judy Heumann. She has been published in Modern Love, the New York Times, the Washington Post, Alice Wong's bestselling Disability Visibility, Glamour, Cosmopolitan, and more. She lives in Toronto with her family.   Things you'll learn from this episode Why disabled parents are not often part of the mainstream parenting conversations What are the challenges that disabled parents face when they're starting the process of becoming parents Why disabled parents face more threats from Child Protective Services, and why demanding that someone parent without help can be considered discriminatory How being disabled prepares potential parents for the parenting journey What creative adaptation is and how it can give disabled parents the freedom to build their life from scratch How non-disabled parents can support the disabled parents in their communities   Resources mentioned Unfit Parent: A Disabled Mother Challenges an Inaccessible World by Jessica Slice Jessica Slice's website Jessica Slice writes about disability, parenting, and poems Jessica on Instagram Demystifying Disability: What to Know, What to Say, and How to be an Ally by Emily Ladau Emily Ladau on Demystifying Disability: What to Know, What to Say, and How to be an Ally (Tilt Parenting Podcast) Learn more about your ad choices. Visit podcastchoices.com/adchoices

Rounding Up
Season 3 | Episode 14 – Supporting Neurodiverse Students in Elementary Mathematics Classrooms - Guest: Dr. Cathery Yeh

Rounding Up

Play Episode Listen Later Mar 20, 2025 26:24 Transcription Available


Dr. Cathery Yeh, Supporting Neurodiverse Students in Elementary Mathematics Classrooms ROUNDING UP: SEASON 3 | EPISODE 14 What meaning does the term neurodiverse convey and how might it impact a student's learning experience?  And how can educators think about the work of designing environments and experiences that support neurodiverse students learning mathematics?  In this episode, we discuss these questions with Dr. Cathery Yeh, a professor in STEM education from the University of Texas at Austin.  BIOGRAPHY Dr. Cathery Yeh is an assistant professor in STEM education and a core faculty member in the Center for Asian American Studies from the University of Texas at Austin. Her research examines the intersections of race, language, and disability to provide a nuanced analysis of the constructions of ability in mathematics classrooms and education systems. TRANSCRIPT Mike Wallus: What meaning does the term neurodiverse convey and how might that language impact a student's learning experience? In this episode, we'll explore those questions. And we'll think about ways that educators can design learning environments that support all of their students. Joining us for this conversation is Dr. Cathery Yeh, a professor in STEM education from the University of Texas at Austin.  Welcome to the podcast, Cathery. It's really exciting to have you with us today. Cathery Yeh: Thank you, Mike. Honored to be invited. Mike: So, I wonder if we can start by offering listeners a common understanding of language that we'll use from time to time throughout the episode. How do you think about the meaning of neurodiversity? Cathery: Thank you for this thoughtful question. Language matters a lot. For me, neurodiversity refers to the natural variation in our human brains and our neurocognition, challenging this idea that there's a normal brain. I always think of… In Texas, we just had a snow day two days ago. And I think of, just as, there's no two snowflakes that are the same, there's no two brains that are exactly the same, too. I also think of its meaning from a personal perspective. I am not a special educator. I was a bilingual teacher and taught in inclusive settings. And my first exposure to the meaning of neurodiversity came from my own child, who—she openly blogs about it—as a Chinese-American girl, it was actually really hard for her to be diagnosed. Asian Americans, 1 out of 10 are diagnosed—that's the lowest of any ethnic racial group. And I'll often think about when… She's proud of her disabled identity. It is who she is. But what she noticed that when she tells people about her disabled identity, what do you think is the first thing people say when she says, “I'm neurodivergent. I have ADHD. I have autism.” What do you think folks usually say to her? The most common response? Mike: I'm going to guess that they express some level of surprise, and it might be associated with her ethnic background or racial identity. Cathery: She doesn't get that as much. The first thing people say is, they apologize to her. They say, “I'm sorry.” Mike: Wow. Cathery: And that happens quite a lot. And I say that because–and then I connected back to the term neurodiversity—because I think it's important to know its origins. It came about by Judy Singer. She's a sociologist. And about 30 years ago, she coined the term neurodiversity as an opposition to the medical model of understanding people and human difference as deficits. And her understanding is that difference is beautiful. All of us think and learn and process differently, and that's part of human diversity. So that original definition of neurodiversity was tied to the autism rights movement. But now, when we think about the term, it's expanded to include folks with ADHD, dyslexia, dyscalculia, mental health, conditions like depression, anxiety, and other neuro minorities like Tourette syndrome, and even memory loss. I wanted to name out all these things because sometimes we're looking for a really clean definition, and definitions are messy. There's a personal one. There's a societal one of how we position neurodiversity as something that's deficit, that needs to be fixed. But it's part of who one is. But it's also socially constructed. Because how do you decide when a difference becomes a difference that counts where you qualify as being neurodiverse, right? So, I think there's a lot to consider around that. Mike: You know, the answer that you shared is really a good segue because the question I was going to ask you involves something that I suspect you hear quite often is people asking you, “What are the best ways that I can support my neurodiverse students?” And it occurs to me that part of the challenge of that question is it assumes that there's this narrow range of things that you do for this narrow range of students who are different. The way that you just talked about the meaning of neurodiversity probably means that you have a different kind of answer to that question when people ask it. Cathery: I do get this question quite a lot. People email it to me, or they'll ask me. That's usually the first thing people ask. I think my response kind of matches my pink hair question. When they ask me the question, I often ask a question back. And I go, “How would you best educate Chinese children in math?” And they're like, “Why would you ask that?” The underlining assumption is that all Chinese children are the same, and they learn the same ways, they have the same needs, and also that their needs are different than the research-based equity math practices we know and have done 50–60 years of research that we've highlighted our effective teaching practices for all children. We've been part of NCTM for 20 years. We know that tasks that promote reasoning and problem solving have been effectively shown to be good for all. Using a connecting math representation—across math representations in a lesson—is good for all. Multimodal math discourse, not just verbal, written, but embodied in part who we are and, in building on student thinking, and all those things we know. And those are often the recommendations we should ask. But I think an important question is how often are our questions connecting to that instead? How often are we seeing that we assume that certain students cannot engage in these practices? And I think that's something we should prioritize more. I'm not saying that there are not specific struggles or difficulties that the neurodiversity umbrella includes, which includes ADHD, dyslexia, autism, bipolar disorder, on and on, so many things. I'm not saying that they don't experience difficulties in our school environment, but it's also understanding that if you know one neurodiverse student—you know me or my child—you only know one. That's all you know. And by assuming we're all the same, it ignores the other social identities and lived experiences that students have that impact their learning.  So, I'm going to ask you a question. Mike: Fire away. Cathery: OK. What comes to your mind when you hear the term “neurodiverse student”? What does that student look like, sound like, appear like to you? Mike: I think that's a really great question. There's a version of me not long ago that would have thought of that student as someone who's been categorized as special education, receiving special education services, perhaps a student that has ADHD. I might've used language like “students who have sensory needs or processing.” And I think as I hear myself say some of those things that I would've previously said, what jumps out is two things: One is I'm painting with a really broad brush as opposed to looking at the individual student and the things that they need. And two is the extent to which painting with a broad brush or trying to find a bucket of strategies that's for a particular group of students, that that really limits my thinking around what they can do or all the brilliance that they may have inside them. Cathery: Thank you for sharing that because that's a reflection I often do. I think about when I learned about my child, I learned about myself. How I automatically went to a deficit lens of like, “Oh, no, how are we going to function in the world? How's she going to function in the world?” But I also do this prompt quite a lot with teachers and others, and I ask them to draw it. When you draw someone, what do you see? And I'll be honest, kind of like drawing a scientist, we often draw Albert Einstein. When I ask folks to draw what a neurodiverse student looks like, they're predominantly white boys, to be honest with you. And I want to name that out. It's because students of color, especially black, brown, native students—they're disproportionately over- and under-identified as disabled in our schooling. Like we think about this idea that when most of us associate autism or ADHD mainly as part of the neurodiversity branch and as entirely within as white boys, which often happens with many of the teachers that I talk to and parents. We see them as needing services, but in contrast, when we think about, particularly our students of color and our boys—these young men—there's often a contrast of criminalization in being deprived of services for them. And this is not even what I'm saying. It's been 50 years of documented research from the Department of Ed from annual civil rights that repeatedly shows for 50 years now extreme disproportionality for disabled black and Latinx boys, in particular from suspension, expulsion, and in-school arrests. I think one of the most surprising statistics for me that I had learned recently was African-American youth are five times more likely to be misdiagnosed with conduct disorder before receiving the proper diagnosis of autism spectrum disorder. And I appreciate going back to that term of neurodiversity because I think it's really important for us to realize that neurodiversity is an asset-based perspective that makes us shift from looking at it as the student that needs to be fixed, that neurodiversity is the norm, but for us to look at the environment. And I really believe that we cannot have conversations about disability without fully having conversations about race, language, and the need to question what needs to be fixed, particularly not just our teaching, but our assessment practices. For example, we talk about neurodiversities around what we consider normal or abnormal, which is based on how we make expectations around what society thinks. One of the things that showed up in our own household—when we think about neurodiversity or assessments for autism—is this idea of maintaining eye contact. That's one of the widely considered autistic traits. In the Chinese and in the Asian household, and also in African communities, making eye contact to an adult or somebody with authority? It is considered rude. But we consider that as one of the characteristics when we engage in diagnostic tools. This is where I think there needs to be more deep reflection around how one is diagnosed, how a conversation of disability is not separate from our understanding of students and their language practices, their cultural practices. What do we consider normative? Because normative is highly situated in culture and context. Mike: I would love to stay on this theme because one of the things that stands out in that last portion of our conversation was this notion that rather than thinking about, “We need to change the child.” Part of what we really want to think about is, “What is the work that we might do to change the learning environment?” And I wonder if you could talk a bit about how educators go about that and what, maybe, some of the tools could be in their toolbox if they were trying to think in that way. Cathery: I love that question of, “What can we as teachers do? What's some actionable things?” I really appreciate Universal Design for Learning framework, particularly their revised updated version, or 3.0 version, that just came out, I think it was June or July of this year. Let me give you a little bit of background about universal design. And I'm sure you probably already know. I've been reading a lot around its origins. It came about [in the] 1980s, we know from cast.org. But I want to go further back, and it really builds from universal design and the work of architecture. So universal design was coined by a disabled architect. His name was Ronald Mace. And as I was reading his words, it really helped me better understand what UDL is. We know that UDL— Universal Design for Learning and universal design—is about access. Everybody should have access to curriculum. And that sounds great, but I've also seen classrooms where access to curriculum meant doing a different worksheet while everybody else is engaging in small group, whole group problem-based learning.  Access might mean your desk is in the front of the room where you're self-isolated—where you're really close to the front of the board so you can see it really well—but you can't talk to your peers. Or that access might mean you're in a whole different classroom, doing the same set of worksheets or problems, but you're not with your grade-level peers.  And when Ronald Mace talks about access, he explained that access in architecture had already been a focus in the late 1900s, around 1998, I think. But he said that universal design is really about the longing. And I think that really shifted the framing. And his argument was that we need to design a place, an environment where folks across a range of bodies and minds feel a sense of belonging there. That we don't need to adapt—the space was already designed for you. And that has been such a transformative perspective: That it shouldn't be going a different route or doing something different, because by doing that, you don't feel like you belong. But if the space is one where you can take part equally and access across the ways you may engage, then you feel a sense of belonging. Mike: The piece of what you said that I'm really contemplating right now is this notion of belonging. What occurs to me is that approaching design principles for a learning environment or a learning experience with belonging in mind is a really profound shift. Like asking the question, “What would it mean to feel a sense of belonging in this classroom or during this activity that's happening?” That really changes the kinds of things that an educator might consider going through a planning process. I'm wondering if you think you might be able to share an example or two of how you've seen educators apply universal design principles in their classrooms in ways that remove barriers in the environment and support students' mathematical learning. Cathery: Oh gosh, I feel so blessed. I spend… Tomorrow I'm going to be at a school site all day doing this. UDL is about being responsive to our students and knowing that the best teaching requires us to listen deeply to who they are, honor their mathematical brilliance, and their agency. It's about honoring who they are. I think where UDL ups it to another level, is it asks us to consider who makes the decision. If we are making all the decisions of what is best for that student, that's not fully aligned with UDL. The heart of UDL, it's around multiple ways for me to engage, to represent and express, and then students are given choice. So, one of the things that's an important part of UDL is honoring students' agency, so we do something called “access needs.” At the start of a lesson, we might go, “What do you need to be able to fully participate in math today?” And kids from kindergarten to high school or even my college students will just write out what they need. And usually, it's pretty stereotypical: “I want to talk to someone when I'm learning.” “I would like to see it and not just hear it.” And then you continually go back and you ask, “What are your access needs? What do you need to fully participate?”  So students are reflecting on their own what they need to be fully present and what they believe is helpful to create a successful learning environment. So that's a very strong UDL principle—that instead of us coming up with a set of norms for our students, we co-develop that. But we're co-developing it based on students reflecting on their experience in their environment. In kindergarten, we have children draw pictures. As they get older, they can draw, they can write. But it's this idea that it's an ongoing process for me to name out what I need to be fully present. And oftentimes, they're going to say things that are pretty critical. It's almost always critical, to be honest with you, but that's a… I would say that's a core component of UDL. We're allowing students to reflect on what they need so they can name it for themselves, and then we can then design that space together. And along the way, we have kids that name, “You know what? I need the manipulatives to be closer.” That would not come about at the start of me asking about access needs. But if we did a lesson, and it was not close by, they'll tell me. So it's really around designing an environment where they can fully participate and be their full selves and feel a sense of belonging. So, that's one example.  Another one that we've been doing is teachers and kids who have traditionally not participated the most in our classrooms or have even engaged in pullout intervention. And we'll have them walk around school, telling us about their day. “Will you walk me through your day and tell me how you feel in each of these spaces, and what are your experiences like?” And again, we're allowing the students to name out what they need. And then they're naming out… Oftentimes, with the students that we're at, where I'm working in mostly multilingual spaces, they'll say, “Oh, I love this teacher because she allows us to speak in Spanish in the room. It's OK.” So that's going back to ideas of action, expression, engagement, where students are allowed a trans language. That's one of the language principles.  But we're allowing students and providing spaces and really paying close attention to: “How do we decide how to maximize participation for our students with these set of UDL guidelines? How we are able to listen and make certain decisions on how we can strengthen their participation, their sense of belonging in our classrooms.” Mike: I think what's lovely about both of those examples—asking them to write or draw what they need or the description of, “Let's walk through the day. Let's walk through the different spaces that you learn in or the humans that you learn with”—is one, it really is listening to them and trying to make meaning of that and using that as your starting point. I think the other piece is that it makes me think that it's something that happens over time. It might shift, you might gain more clarity around the things that students need or they might gain more clarity around the things that they need over time. And those might shift a little bit, or it might come into greater focus. Like, “I thought I needed this” or “I think I needed this, but what I really meant was this.” There's this opportunity for kids to refine their needs and for educators to think about that in the designs that they create. Cathery: I really appreciate you naming that because it's all of that. It's an ongoing process where we're building a relationship with our students for us to co-design what effective teaching looks like—that it's not a one size fits all. It's disrupting this idea that what works for one works for all. It's around supporting our students to name out what they need. Now, I'm almost 50. I struggle to name out what I need sometimes, so it's not going to happen in, like, one time. It's an ongoing process. And what we need is linked to context, so it has to be ongoing. But there's also in the moments as well. And it's the heart of good teaching in math, when you allow students to solve problems in the ways that make sense to them, that's UDL by design. That's honoring the ideas of multiplicity in action, expression. When you might give a context-based problem and you take the numbers away and you give a set of number choices that students get to choose from. That is also this idea of UDL because there's multiple ways for them to engage. So there are also little things that we do that… note how they're just effective teaching. But we're honoring this idea that children should have agency. All children can engage in doing mathematics. And part of learning mathematics is also supporting our students to see the brilliance in themselves and to leverage that in their own teaching and learning. Mike: Yeah. Something else that really occurred to me as we've been talking is the difference between the way we've been talking about centering students' needs and asking them to help us understand them and the process that that kind of kicks off. I think what strikes me is that it's actually opening up the possibilities of what might happen or the ways that a student could be successful as opposed to this notion that “You're neurodiverse, you fit in this bucket. There's a set of strategies that I'm going to do just for you,” and those strategies might actually limit or constrict the options you have. For example, in terms of mathematics, what I remember happening very often when I was teaching is, I would create an open space for students to think about ways that they could solve problems. And at the time, often what would happen is kids who were characterized as neurodiverse wouldn't get access to those same strategies. It would be kind of the idea that “This is the way we should show them how to do it.” It just strikes me how different that experience is. I suspect that that was done with the best of intentions, but I think the impact unfortunately probably really didn't match the intent. Cathery: I love how you're being honest. I did the same thing when I was teaching, too, because we were often instructed to engage in whole-group instruction and probably do a small-group pullout. That was how I was taught. And when the same kids are repeatedly pulled out because we're saying that they're not able to engage in the instruction. I think that part of UDL is UDL is a process, realizing that if students are not engaging fully in the ways that we had hoped, instead of trying to fix the child, we look at the environment and think about what changes we need to make in tier one. So whole-group instruction, whole-group participation first to see how we can maximize their participation. And it's not one strategy, because it depends; it really depends. I think of, for example, with a group of teachers in California and Texas now, we've been looking at how we can track participation in whole-group settings. And we look at them across social demographics, and then we started to notice that when we promote multimodal whole-group participation, like kids have access to manipulatives even during whole-group share out. Or they have visuals that they can point to, their participation and who gets to participate drastically increase. So there's many ways in which, by nature, we engage in some narrow practices because, too, oftentimes whole group discussion is almost completely verbal and, at times, written, and usually the teacher's writing. So it's going back to the idea of, “Can we look at what we want our students to do at that moment? So starting on the math concept and practices, but then looking at our students and when they're not participating fully, it's not them. What are the UDL principles and things that I know and strategies that I have with my colleagues that I can make some small shifts?” Mike: You know, one of the things that I enjoy most about the podcast is that we really can take a deep dive into some big ideas, and the limitation is we have 20 minutes to perhaps a half hour. And I suspect there are a lot of people who are trying to make meaning of what we're talking about and thinking about, “How might I follow up? How might I take action on some of the ideas?” So I want to turn just for a little while to resources, and I'm wondering if there are resources that you would suggest for a listener who wants to continue learning about universal design in a mathematics classroom? Cathery: Oh, my goodness, that's such a hard question because there's so many. Some good ones overall: I would definitely encourage folks to dive into the UDL guidelines—the 3.0 updates. They're amazing. They're so joyful and transformative that they even have, one of the principles is centering joy in play, and for us to imagine that, right? Mike: Yes! Cathery: What does that mean to do that in a math classroom? We can name out 50 different ways. So how often do we get to see that? So, I would highly encourage folks to download that, engage in deep discussion because it was a 2.2 version for, I think, quite a few years. I would also lean into a resource that I'm glad to email later on so it's more easily accessible. I talked about access needs, this idea of asking students, asking community members, asking folks to give this opportunity to name out what they need. It's written by a colleague, Dr. Daniel Reinholz and Dr. Samantha Ridgway. It's a lovely reading, and it focuses specifically in STEM but I think it's a great place to read. I would say that Dr. Rachel Lambert's new book on UDL math is an excellent read. It's a great joyful read to think about. I'm going to give one shout out to the book called the Year of the Tiger: An Activist's Life. It's by Alice Wong. I encourage that because how often do we put the word activism next to disability? And Alice Wong is one of the most amazing humans in the world, and it's a graphic novel. So it's just joyful. It's words with poetry and graphic novel mixed together to see the life of what it means to be a disabled activist and how activism and disability goes hand in hand. Because when you are disabled and multi-marginalized, you are often advocating for yourself and others. It's amazing. So I'll stop there. There's endless amounts. Mike: So for listeners, we'll link the resources that Cathery was talking about in our show notes. I could keep going, but I think this is probably a great place to stop. I want to thank you so much for joining us. It's really been a pleasure talking with you. Cathery: Thank you. Thank you. Mike: This podcast is brought to you by The Math Learning Center and the Maier Math Foundation, dedicated to inspiring and enabling all individuals to discover and develop their mathematical confidence and ability. © 2025 The Math Learning Center | www.mathlearningcenter.org

KQED’s Forum
Bay Area Legends: Activist Alice Wong and The Power of Bringing Visibility to Disability

KQED’s Forum

Play Episode Listen Later Jan 24, 2025 57:46


Writer and disability justice activist Alice Wong's illness took her ability to speak without technological assistance, but she continues to make herself, and members of her community, profoundly heard. As part of our new series profiling legends of the Bay Area, Wong joins us to talk about her joyous approach to life and her recent MacArthur Genius win, and to share some favorite interviews recorded with StoryCorps as part of her Disability Visibility Project. We also check in with fellow disability rights activists about the evolution of the movement and the importance of being heard. Guests: Alice Wong, disabled activist, writer and community organizer; founder, Disability Invisibility Project; author, "Year of the Tiger: An Activist's Life." Yomi Sachiko Young, Oakland-based social justice organizer, disability justice dreamer Sandy Ho, executive director of the Disability and Philanthropy Forum Emily Flores, journalist and founder/editor in chief, Cripple Media

CIIS Public Programs
Alice Wong and Mia Mingus: On Disability Intimacy

CIIS Public Programs

Play Episode Listen Later Oct 31, 2024 59:01


Some podcast apps may not display links from our show notes properly, so we have included a list of links at the end of this description. * Alice Wong is an acclaimed disabled activist whose work and writing has shaped the modern conversation around disability. As the founder and director of the Disability Visibility Project, her work foregrounds the stories of those living with disabilities and paints a vibrant picture of disability media and culture. In her latest book, Disability Intimacy, Alice uses her distinctive voice to highlight and curate stories of intimacy. More than sex, more than romantic love, the pieces in her stunning and illuminating new anthology offer broader and more inclusive definitions of what it can mean to be intimate with another person. * In this episode, Alice is joined in a conversation with writer, educator and trainer for transformative justice and disability justice Mia Mingus. Their conversation about Alice's life and work will free your thinking, invigorate your spirit, and delight your desires. * This episode was recorded during a live online event on June 18th, 2024. You can also watch it on the CIIS Public Programs YouTube channel. A transcript is available at ciispod.com. To find out more about CIIS and public programs like this one, visit our website ciis.edu and connect with us on social media @ciispubprograms. * We hope that each episode of our podcast provides opportunities for growth, and that our listeners will use them as a starting point for further introspection. Many of the topics discussed on our podcast have the potential to bring up feelings and emotional responses. If you or someone you know is in need of mental health care and support, here are some resources to find immediate help and future healing: * -Visit 988lifeline.org or text, call, or chat with The National Suicide Prevention Lifeline by dialing 988 from anywhere in the U.S. to be connected immediately with a trained counselor. Please note that 988 staff are required to take all action necessary to secure the safety of a caller and initiate emergency response with or without the caller's consent if they are unwilling or unable to take action on their own behalf. * -Visit thrivelifeline.org or text “THRIVE” to begin a conversation with a THRIVE Lifeline crisis responder 24/7/365, from anywhere: +1.313.662.8209. This confidential text line is available for individuals 18+ and is staffed by people in STEMM with marginalized identities. * -Visit translifeline.org or call (877) 565-8860 in the U.S. or (877) 330-6366 in Canada to learn more and contact Trans Lifeline, who provides trans peer support divested from police. * -Visit ciis.edu/ciis-in-the-world/counseling-clinics to learn more and schedule counseling sessions at one of our centers. * -Find information about additional global helplines at befrienders.org. * LINKS * Podcast Transcripts: https://www.ciispod.com/ * California Institute of Integral Studies (CIIS) Website: https://www.ciis.edu/ * CIIS Public Programs YouTube Channel: https://www.youtube.com/c/ciispublicprograms * CIIS Public Programs Instagram: https://www.instagram.com/ciispubprograms/ * Mental Health Care and Support Resources: https://988lifeline.org/ https://thrivelifeline.org/ https://translifeline.org/ https://www.ciis.edu/ciis-in-the-world/counseling-clinics https://befrienders.org/

Book Riot - The Podcast
National Book Award Finalists, MacArthur Geniuses, THE CORRECTIONS bags Streep, and More Book News

Book Riot - The Podcast

Play Episode Listen Later Oct 7, 2024 55:59


Jeff and Rebecca digest the finalists for the 2024 National Book Award in fiction, envy and admire MacArthur winners, get pumped for The Corrections on TV, and think about Reese's thriller. Subscribe to the podcast via RSS, Apple Podcasts, and Spotify. For more industry news, sign up for our Today in Books daily newsletter! Check out the Book Riot Podcast Book Page on Thriftbooks! The Book Riot Podcast Patreon Discussed in this episode: This content contains affiliate links. When you buy through these links, we may earn an affiliate commission. mytbr.co National Book Award finalists announced Federal judge orders Arkansas public library to reshelve “inappropriate” books Jason Reynolds, Ling Ma, Alice Wong among 2024 MacArthur grant winners Meryl Streep attached to star in Corrections adaptation Reese Witherspoon to co-write debut novel with Harlan Coben The Mighty Red by Louise Erdrich Entitlement by Rumaan Alam Chop Fry Watch Learn by Michelle King Learn more about your ad choices. Visit megaphone.fm/adchoices

Group Practice Tech
Episode 433: Intersections of Accessibility & Technology in Therapy Practice

Group Practice Tech

Play Episode Listen Later Sep 13, 2024 58:12


Welcome solo and group practice owners! We are Liath Dalton and Evan Dumas, your co-hosts of Group Practice Tech. In our latest episode, we chat with therapist Emily Decker about how to make group practice more accessible, both for clients and staff.   We discuss: The number of mental health clinicians who are disabled Navigating identity as a disabled person and as a helping professional, especially where those identities intersect Practice culture and neurodivergence Ways to create a disability affirming culture within group practice (for clients and staff) Unpacking what professionalism means What accessibility means What disability means Internalized ableism Unpacking what's actually needed for therapy and what isn't Universal Design, and how to apply it for therapy practices Our upcoming CE training with Emily on this topic Listen here: https://personcenteredtech.com/group/podcast/ For more, visit our website. PCT Resources 2 legal-ethical CE credit hour training (live and recorded), presented by Emily Decker, MS, LPC, NCC, Can You Hear Me? The Legal and Ethical Role of Accessibility in Anti-Oppressive and Neurodivergent-Affirming Teletherapy This training aims to create familiarity and comfort for therapists providing teletherapy and combat stigma and inaccessibility in teletherapy. The conversation is situated within an anti-oppressive and neurodivergent-affirming framework, connecting concepts of accessibility and disability justice with mental health care, and provides an overview of legal and ethical issues pertaining to accessibility within teletherapy, including identifying and dispelling common myths about accessibility and disability, and identifying specific, concrete resources for therapists to use to enhance the accessibility of their services. Resources Recommended by Emily Book: Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau DARN Disability 2023 conference recordings (free! and geared towards educators and supervisors) Web Accessibility and the ADA Textbook: Disability-Affirmative Therapy by Rhoda Olkin This author also has a webinar on this topic: https://www.youtube.com/watch?v=vEJ46Rfz2kc Textbook: Disability As Diversity by Erin E. Andrews Book: Disability Visibiltiy by Alice Wong (also has a great website and podcast by the same name)

Embodied
Written: Disability Love Stories

Embodied

Play Episode Listen Later Jul 12, 2024 49:41


When you live in a disabled body, you don't always get to see yourself in the love stories you consume. Anita talks with three folks changing that through their own writing. She meets a novelist, essayist and activist who share their disability love stories and how writing has changed their relationships with others and themselves.Meet the guests:- Keah Brown, journalist and author of "The Pretty One," talks about her experience with cerebral palsy and her multi-year journey to self-love- Maria Town, activist and CEO and president of the American Association of People with Disabilities, discusses opening up about her romantic relationship for the first time in her essay, ”This is My Solemn Vow”- Talia Hibbert, British romance author, digs into how her own experiences as a disabled person inform the romantic leads that she writesRead the transcript | Review the podcast on your preferred platformFollow Embodied on X and Instagram Leave a message for EmbodiedSign up for WUNC's new Politics Newsletter here.Dive deeper:“Disability Intimacy,” edited by activist Alice Wong

Dating Intentionally
86. Dating with disability & chronic illness ft. Jessica Slice

Dating Intentionally

Play Episode Listen Later Jul 12, 2024 52:00


In this eye-opening conversation with writer Jessica Slice, you'll learn what it's like to date with a disability and chronic illness. We get into so much in this episode, like when to disclose a disability, tips for using dating apps, where dating apps fall short when it comes to inclusivity for disabled folks and tips for what to do when you encounter someone in your dating journey who has a disability. We also talk a lot about Jessica's amazing new book, Dateable: Swiping Right, Hooking Up and Settling Down while Chronically Ill and Disabled. Book link: https://www.amazon.com/Dateable-Swiping-Settling-Chronically-Disabled/dp/0306832739 Modern Love piece: https://www.nytimes.com/2021/11/19/style/modern-love-he-cared-so-i-broke-up-with-him.html Slide into my DMs on IG: https://www.instagram.com/dating.intentionally/ Follow on TikTok: https://www.tiktok.com/@dating.intentionally Get my free dating FAQ guide: http://eepurl.com/ihTMYj Read more on the blog: https://intentionally.dating/blog-posts/  Watch on YouTube: https://www.youtube.com/@Dating.Intentionally  Submit a dating dilemma: https://forms.gle/xCmAWvDPGJdr3rFz9  Rate on Apple: https://t.ly/JJgpP  About Jessica Slice: Jessica Slice is a disabled author and essayist who has published essays The New York Times's Modern Love column, in Alice Wong's bestselling Disability Visibility, The New York Times, The Washington Post, Hippocampus, Glamour, Cosmopolitan, and HuffPost. Learn more about your ad choices. Visit megaphone.fm/adchoices

Making Contact
Caring Relationships: Negotiating Meaning and Maintaining Dignity (Encore)

Making Contact

Play Episode Listen Later Jul 10, 2024 29:15


The vast majority of care recipients are exclusively receiving unpaid care from a family member, friend, or neighbor. The rest receive a combination of family care and paid assistance, or exclusively paid formal care. Whether you're a paid home care provider, or rely on personal assistance to meet your daily needs, or a family member caring for a loved one, the nature of the working relationship depends on mutual respect and dignity. During this week's anniversary of the Americans with Disabilities Act, we'll revisit the dynamic and complex relationship of care receiving and giving. Learn more about the story and find the transcript on radioproject.org. Making Contact digs into the story beneath the story—contextualizing the narratives that shape our culture. Featuring narrative storytelling and thought-provoking interviews. We cover the most urgent issues of our time and the people on the ground building a more just world. EPISODE FEATURES: This episode features Camille Christian, home care provider and SEIU member Camille Christian & Brenda Jackson, home care providers & SEIU members; Patty Berne, co-founder and director, Sins Invalid; Jessica Lehman, executive director, San Francisco Senior and Disability Action; Kenzi Robi, president, San Francisco IHSS (In Home Supportive Services) Public Authority Governing Body; Rachel Stewart, queer disabled woman passionate about disability and employment issues; Alana Theriault, disability benefits counselor in Berkeley, California; Ingrid Tischer, director of development, Disability Rights Education & Defense Fund (DREDF); and Alta Mae Stevens, in-home caregiver. MAKING CONTACT: This episode is hosted by Laura Flynn & Anita Johnson. It is produced by Anita Johnson, Lucy Kang, Salima Hamirani, and Amy Gastelum, and Contributing Producers, Alice Wong and Stephanie Guyer-Stevens. Our executive director is Jina Chung.  MUSIC: This episode includes Dexter Britain: The Time To Run (Finale), Gillicuddy: Adventure, Darling, Steve Combs: March, Jason Shaw: Running Waters, Jared C. Balogh: BRICK BY BRICK DAY BY DAY, Jared C. Balogh: INCREMENTS TOWARDS SERENITY, Nheap: Crossings, Cherly KaCherly: The Hungry Garden, Trio Metrik: Vogelperspektive, & Kevin MacLeod: Faster Does It. Learn More: UCSF: UCSF Study Projects Need for 2.5M More Long-Term Care Workers by 2030 SEIU: Longterm Care Workers Disability Rights Education & Defense Fund Disability Visibility Project Hand in Hand: The Domestic Employers Network National Disability Leadership Alliance Senior and Disability Action Sins Invalid San Francisco In Home Supportive Services Public Authority Family Caregiver Alliance  

You First: The Disability Rights Florida Podcast
#CripTheVote and Voting Advocacy - with Andrew Pulrang and Gregg Beratan

You First: The Disability Rights Florida Podcast

Play Episode Listen Later May 23, 2024 59:42


This podcast episode features Andrew Pulrang and Gregg Beratan, prominent figures in disability advocacy and social change. Their pioneering initiative, #CripTheVote, created alongside Alice Wong, has been important in raising awareness about the political power of disabled citizens and sparking meaningful conversations about disability, politics, and activism. Through their efforts, Pulrang and Beratan have used social media to foster a continuous online space that acts as a living archive for disability voting and civic engagement work. Our conversation also considers and discusses concerns and hesitancy around voting, especially for people with disabilities. We discuss the different approaches and why voting can be an effective way for people with disabilities to advocate for themselves. Relevant Links Follow Andrew Pulrang on Twitter: x.com/AndrewPulrang Follow Gregg Beratan on Twitter: x.com/GreggBeratan Disability Rights Florida Voting Resources: https://bit.ly/3UN9bp6 Access the Vote Florida: www.AccessTheVote.org Rev Up Campaign through AAPD: www.AAPD.com/about-rev-up Disability Victory: DisabilityVictory.org Detroit Disability Power: DetroitDisabilityPower.org New Disabled South: NewDisabledSouth.org

KQED’s Forum
Alice Wong Redefines ‘Disability Intimacy' in New Anthology

KQED’s Forum

Play Episode Listen Later May 2, 2024 55:45


“Intimacy is about relationships within a person's self, with others, with communities, with nature, and beyond,” writes Alice Wong, founder and director of the Disability Visibility Project and editor of the new anthology, “Disability Intimacy.” When Wong began work on the book, she googled what would become its title — and what was she found was “basic AF” and made her go “Ewwwwww.” That inspired her to commission and collect writing from people with disabilities about what intimacy meant to them. The essays reflect on friendships, parent-child bonds, romantic relationships and disability communities. We'll hear from Wong and some of the anthology's contributors about the intimacy of sharing and disclosing our relationships with ourselves, with others and with disability itself. And we'll hear their stories of “love, care and desire” — and the personal and systemic change that intimacy can bring. Guests: Alice Wong, disabled activist, writer and community organizer; editor, "Disability Intimacy: Essays on Love, Care, and Desire" s.e. smith, freelance journalist whose essay in "Disability Intimacy" is "Skin Hunger and the Taboo of Wanting to be Touched" Yomi Sachiko Young, Oakland-based disability justice activist; dreamer whose essay in "Disability Intimacy" is "Primary Attachment" Melissa Hung, writer, editor and journalist whose essay in "Disability Intimacy" is "The Last Walk"; founding editor in chief, Hyphen - an independent Asian American magazine; former director, San Francisco WritersCorps

How It Looks From Here
#42 Encore - Petra Kuppers

How It Looks From Here

Play Episode Listen Later Apr 30, 2024 39:53


This month we're rebroadcasting one of our favorites from 2022. Here, Mary talks with Petra Kuppers, a disability culture activist and community performance artist who lives in delighted concert with the natural world, sharing in powerful intelligence, adapdibility and love of True Nature. Petra holds the Anita Gonzalez Professor of Performance Studies and Disability Culture chair in English and Women's & Gender studies departments at the University of Michigan, Ann Arbor. She also teaches on the low-residency MFA Interdisciplinary Arts faculty at Goddard College. In her work, Petra uses somatic and speculative writing as well as performance practice to engage audiences toward more socially just and enjoyable futures. She has written academic books on disability arts and culture, medicine and performance, and community performance.In their conversation, Mary and Petra explore the natural world and its diversity, alongside the political, spiritual and activist considerations that arise from being embodied.Learn more about Petra Kuppers' art, writing and activism by visiting her website at https://www.petrakuppers.comCheck out Petra's poetry books like Gut Botany, her speculative fiction like Ice Bar and her scholarship, most recently in her book Eco Soma with the University of Minnesota Press in the Art After Nature series. You can find more on disability culture in the anthology, Disability Visibility edited by Alice Wong, available as a pdf at the link. And, in the meantime, Petra has been awarded and is currently a Guggenheime Fellow spending recent months at the Camargo Foundation in Southern France. You can check out the video work she's completed there - Crip/Mad Archive Dances project: a final 35 min video documentary.She's also completed a new poetry collection, Diver Beneath the Street -- true crime meets eco poetry at the level of the soil, out May 2024.

Sad Francisco
Keep Masks in Healthcare f/ Jillian Crochet, Senior and Disability Action

Sad Francisco

Play Episode Listen Later Apr 14, 2024 33:41


Politics have turned COVID into a dirty word, but Jillian Crochet, a Senior and Disability Action member, is working to get the San Francisco Department of Public Health to keep masking requirements in medical facilities and jails beyond April 30, when they're set to expire. Letter to SFDPH to keep masks in healthcare April 16 Action (IndyBay) Senior and Disability Action (Instagram | Twitter) Disability Visibility Project #N95s4UCSF

Feeling This Life
Catarina Rivera (Blindish Latina)

Feeling This Life

Play Episode Listen Later Mar 4, 2024 40:55


Cathy interviews Catarina Rivera, public speaker and disability and education inclusion advocate. Catarina, who has retinitis pigmentosa, has worn hearing aids from a young age and was diagnosed with a progressive vision disability at 17 years old.  Paige, Jenny, and Cathy consider how knowing what is available and having a choice about it is both inclusion and self-care.  They consider the positive impact of considering your strengths and how accidental accessibility makes life easier.  Catarina's Socials:   Instagram: http://instagram.com/blindishlatina  X: http://twitter.com/catarinarivera  Facebook: http://www.facebook.com/blindishlatina  Linkedin: http://www.linkedin.com/in/catarinarivera  YouTube: https://www.youtube.com/@CatarinaRivera  Website: www.catarinarivera.com    Mentioned in today's episode:   Haben: The Deafblind Woman Who Conquered Harvard Law, by Haben Girma, with a forward by Stephen Curry: https://habengirma.com/book/   Navigating Blindness: https://www.instagram.com/navigatingblindness?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==  Prevail and Braille Mama: https://www.instagram.com/prevailandbraillemama?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==  Crip Camp documentary: https://www.youtube.com/watch?v=OFS8SpwioZ4&pp=ygUJY3JpcCBjYW1w  Book: Demystifying Disability, by Emily Ladau: https://www.amazon.com/Demystifying-Disability-What-Know-Ally/dp/1984858971/ref=sr_1_1?hvadid=676936614912&hvdev=c&hvlocphy=9014255&hvnetw=g&hvqmt=e&hvrand=12604771403547326959&hvtargid=kwd-1990405576204&hydadcr=22167_13517494&keywords=demystify+disability&qid=1707748629&sr=8-1  Book: Disability Visability, by Alice Wong: https://disabilityvisibilityproject.com/book/dv/    Bret Dahmke Memorial Scholarship, a $500 scholarship that assists a Kentucky family of a child with a visual impairment to attend a local or national conference that is related to blindness/low vision.: https://vips.org/bret-dahmke-scholarship/      Please give us your feedback using this survey link: ⁠https://educationutah.co1.qualtrics.com/jfe/form/SV_39OmBvMih6MlgNw⁠      Make a Donation to-   VIPS: ⁠https://secure.vips.org/np/clients/vips/donation.jsp?forwardedFromSecureDomain=1&campaign=495⁠   Anchor Center: ⁠https://www.anchorcenter.org/get-involved/donate/⁠     Get in touch with us!   Follow us on Facebook @Feelingthislifepodcast and Instagram @Feelingthislife   Email: ⁠feelingthislife@vips.org⁠   ⁠www.anchorcenter.org⁠   ⁠www.vips.org⁠ 

Death Panel
#N95s4UCSF w/ Alice Wong (02/01/24)

Death Panel

Play Episode Listen Later Mar 1, 2024 57:52


Beatrice speaks with Alice Wong about Alice's campaign to reinstate a mask mandate at UCSF, a hospital system home to a number of physicians who have played an outsized, deleterious, role in advocating for a premature end to covid protections. Transcript: https://www.deathpanel.net/transcripts/alice-wong-ucsf Find Alice's call to action here: https://disabilityvisibilityproject.com/2024/01/25/n95s4ucsf-call-to-action/ Find our template letter from Abby here: https://docs.google.com/document/d/e/2PACX-1vTyI4yLBuOJQR_IgnYVc17GxCbBT2G32QiENnFLq0kZCDmoLy-c23o8eLX_ISNlCMCA6xARBAUkWfqQ/pub Find Leah Lakshmi Piepzna-Samarasinha's template here: https://docs.google.com/document/d/1JxT8VQbV7ju-xUrKCG6NDeW2scOROyis10wjNg4YnTY/edit Find our book Health Communism here: www.versobooks.com/books/4081-health-communism Find Jules' new book, A Short History of Trans Misogyny (out this week!) here: https://www.versobooks.com/products/3054-a-short-history-of-trans-misogyny Death Panel merch here (patrons get a discount code): www.deathpanel.net/merch As always, support Death Panel at www.patreon.com/deathpanelpod Further reading: Alice Wong's most recent column for Teen Vogue: COVID Isn't Going Anywhere. Masking Up Could Save My Life. https://www.teenvogue.com/story/covid-isnt-going-anywhere-masking-up-could-save-my-life Alice Wong, August 2022 (Disability Visibility Project): My ICU Summer: A Photo Essay https://disabilityvisibilityproject.com/2022/08/07/my-icu-summer-a-photo-essay/ Alice Wong, 2020 (Disability Visibility Project): Disabled Oracles and the Coronavirus https://disabilityvisibilityproject.com/2020/03/18/coronavirus/ Alice Wong, March 2023 (Teen Vogue): The “Unwinding” of Medicaid Coverage Will Be Difficult for Disabled Americans, Leave More People Uninsured https://www.teenvogue.com/story/medicaid-coverage-covid Alice Wong's 2023 interview with KQED: Alice Wong: I Still Have a Voice https://www.kqed.org/perspectives/201601142614/alice-wong-i-still-have-a-voice Alice Wong, January 2024 (Disability Visibility Project): Disabled Outrage and #PodSaveJon https://disabilityvisibilityproject.com/2024/01/02/disabled-outrage-and-podsavejon/

Here After with Megan Devine
Is There Enough Love to Go Around?

Here After with Megan Devine

Play Episode Listen Later Feb 12, 2024 24:28 Transcription Available


The world can feel like such a lonely place sometimes. You ever feel like there's not enough love and support to go around? Like, there's a severe shortage of compassion in the world, both for you and well, everyone? Me too, friends.  To get us into this topic, this week on It's OK, we cover grief comparisons, like whether divorce and death should be compared, or if the death of anyone should be compared to the loss of a pet. Of course the short answer is no: grief comparisons are never useful. For the long answer though - listen to the show.  This episode is basically my TED talk, if I had one, on how we create that support-filled world we all want (and deserve). It's my personal favorite episode of season one, brought to you again for this Valentine's day.    In this episode we cover: Why comparing divorce to death, or pet loss to child loss, is a Very. Bad. Idea. (usually) Is it ok to be sad about a musician or actor's death, even if you never met them?  How to treat compassion like an abundant resource AND have good boundaries all at the same  The path to the love-filled, support-rich world we all want (it's not easy, but it's worth it)  Terminology update: in this episode I use the term gender-fluid, but the term gender-expansive is more accurate.   Looking for a creative exploration of grief? Check out the best selling Writing Your Grief course here.   About Megan:  Psychotherapist Megan Devine is one of today's leading experts on grief, from life-altering losses to the everyday grief that we don't call grief. Get the best-selling book on grief in over a decade, It's Ok that You're Not OK, wherever you get books. Find Megan @refugeingrief   Notable quote:  “It sounds pretty woo but compassion really is an expandable resource. Practicing inclusion and validation means people feel heard, and heard people hear people, which means the whole culture starts to change from one of vindictive “how dare you feel that way!” to at worst, a neutral, impartial kindness, and at best - well, being generous like this creates a world built and sustained by love.” - Megan Devine   Resources:  Love in action! Check out this exceptionally non-extensive list of people to learn from as we grow the love-filled world we all want:  Rachel Cargle, Alok Menon, Alice Wong, Free Mom Hugs, Farmer Veteran Coalition, Natalie Weaver, & Resting Waters   Want to talk with Megan directly? Join our patreon community for live monthly Q&A grief clinics: your questions, answered. Want to speak to her privately? Apply for a 1:1 grief consultation here.    Check out Megan's best-selling books - It's OK That You're Not OK and How to Carry What Can't Be Fixed   Books and resources may contain affiliate links.See omnystudio.com/listener for privacy information.

The Englewood Review of Books Podcast
Episode 72: Live from CCDA w/Andrea Mae, Jody Michele, Andrew Draper

The Englewood Review of Books Podcast

Play Episode Listen Later Jan 29, 2024 44:00


Chris sat down with 3 co-authors and first-time podcast guests at the recent CCDA conference to discuss their work in the intersection of the topics of disability, inclusion, ministry leadership and the life of the church.Books Mentioned in this Episode:Disabling Leadership: A Practical Theology for the Broken Body of Christ by Andrew Draper, Jody Michele & Andrea MaeA Disability History of the United States by Kim NielsenHow the Body of Christ Talks by C. Christopher SmithThe Brothers Karamazov by Fyodor DostoyevskyDisability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong

Death Panel
Pathologizing Palestinian Resistance w/ Liat Ben-Moshe and Leah Harris (01/11/23)

Death Panel

Play Episode Listen Later Jan 12, 2024 60:56


Beatrice and Jules speak with Liat Ben-Moshe and Leah Harris about how Palestinian resistance and rebellion is pathologized and the importance of transnational disability solidarity with Palestine. Transcript: https://www.deathpanel.net/transcripts/pathologizing-palestine Find our book Health Communism here: www.versobooks.com/books/4081-health-communism Pre-order Jules' new book here: https://www.penguinrandomhouse.com/books/733966/a-short-history-of-trans-misogyny-by-jules-gill-peterson/ Death Panel merch here (patrons get a discount code): www.deathpanel.net/merch As always, support Death Panel at www.patreon.com/deathpanelpod Referenced in this episode: — Nu'man Abd al-Wahid, "Pathologising Palestinians to revive eugenic genocide" https://english.almayadeen.net/articles/analysis/pathologising-palestinians-to-revive-eugenic-genocide — Mohammad El-Kurd, "Jewish settlers stole my house. It's not my fault they're Jewish." https://mondoweiss.net/2023/09/jewish-settlers-stole-my-house-its-not-my-fault-theyre-jewish/ — Alice Wong, "Why Palestinian Liberation Is Disability Justice" https://disabilityvisibilityproject.com/2023/12/02/why-palestinian-liberation-is-disability-justice/

Live Like the World is Dying
S1E101 - Leah on Disability and Preparedness

Live Like the World is Dying

Play Episode Listen Later Dec 22, 2023 83:31


Episode Summary This week on Live Like the World is Dying, Margaret and Leah talk about disability, preparedness, and covid. Guest Info Leah Lakshmi Piepzna-Samarasinha (They/She) is a writer and structural engineer of disability and transformative justice work. Leah can be found at brownstargirl.org, on Instagram @leahlakshmiwrites, or on Bluesky @thellpsx.bsky.social Their book The Future is Disabled: Prophecies, Love Notes, and Mourning Songs can be found: https://bookshop.org/p/books/the-future-is-disabled-prophecies-love-notes-and-mourning-songs-leah-lakshmi-piepzna-samarasinha/18247280 Their book Care Work: Dreaming Disability Justice can be found: https://bookshop.org/p/books/care-work-dreaming-disability-justice-leah-lakshmi-piepzna-samarasinha/16603798 Host Info Margaret (she/they) can be found on twitter @magpiekilljoy or instagram at @margaretkilljoy. Publisher Info This show is published by Strangers in A Tangled Wilderness. We can be found at www.tangledwilderness.org, or on Twitter @TangledWild and Instagram @Tangled_Wilderness. You can support the show on Patreon at www.patreon.com/strangersinatangledwilderness. Transcript Leah on Disability and Preparedness Resources Mentioned: StaceyTaughtUs Syllabus, by Alice Wong and Leah: https://disabilityvisibilityproject.com/2020/05/23/staceytaughtus-syllabus-work-by-stacey-milbern-park/ NoBody Is Disposable Coalition: https://nobodyisdisposable.org/ Power To Live Coalition: https://www.powertolivecoalition.org/ Disability Visibility Project article about Power to Live : https://disabilityvisibilityproject.com/2019/10/26/call-for-stories-powertolive/ Power to Live survival skillshare doc: http://tinyurl.com/dissurvival Long winter crip survival guide for pandemic year 4/forever by Leah Lakshmi Piepzna-Samarasinha and Tina “constant tt” Zavitsanos https://www.tinyurl.com/longwintersurvival Pod Mapping for Mutual Aid by Rebel Sydney Rose Fayola Black: https://docs.google.com/document/d/1-QfMn1DE6ymhKZMpXN1LQvD6Sy_HSnnCK6gTO7ZLFrE/mobilebasic?fbclid=IwAR0ehOJdo-vYmJUrXsKCpQlCODEdQelzL9AE5UDXQ1bMgnHh2oAnqFs2B3k Half Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine. (By Leah) https://docs.google.com/document/d/1rIdpKgXeBHbmM3KpB5NfjEBue8YN1MbXhQ7zTOLmSyo/edit Sins Invalid Disability Justice is Climate Justice: https://www.sinsinvalid.org/news-1/2022/7/7/disability-justice-is-climate-justice Skin Tooth and Bone: The Basis of Movement is Our People (A disability justice primer): https://www.sinsinvalid.org/disability-justice-primer DJ Curriculum by Sins: https://www.sinsinvalid.org/curriculum Partnership for Inclusive Disaster Strategies: https://disasterstrategies.org/ Live Like the World is Dying: Leah on Disability & Preparedness **Margaret ** 00:15 Hello, and welcome to Live Like the World is Dying, your podcast for what feels like the end times. I'm your host, Margaret killjoy. And I always tell you that I'm excited about episodes, but I'm really excited about this episode. It put me in a better mood than when I started the day that I get to record this episode. Because today, we're going to be talking about disability and preparedness. We're gonna be talking about Covid abandonment. And we're gonna be talking about a lot of the questions that... a lot of the questions that people write us to talk about that they have about preparedness and I think that we can cover a lot of those. Not me, but our guest. But first before the guest, a jingle from another show on the network. Oh, the network is called Channel Zero Network. It is a network of anarchists podcasts and here's a jingle. [sings a simple melody] **Margaret ** 01:08 Okay, and we're back. So, if you could introduce yourself with your name, your pronouns, and then I guess just a little bit about how you got involved in thinking about and dealing with disability and preparedness. **Leah ** 02:00 Sure. Hi, my name is Leah Lakshmi Piepzna-Samarasinha. She and They pronouns. Right now I live in Pocomtuc and Nipmuc territories in Western Massachusetts. And that is a great question. I will also just plug myself briefly and be like I'm a disability justice and transformative justice old sea-hag, aging punk of color who has written or co-edited ten books and done a lot of shit. Okay, so when I was sitting on the toilet thinking about "What do I want to tell Margaret when we get on the show?", I was actually thinking that my disability and my preparedness routes are kind of one in the same because... So I'm 48 [years old] now and I got sick when I was 21-22. So like back in 96-97. And, it was the initial episode that I got sick with chronic fatigue, ME, and fibromyalgia. And I was just super fucking ill and on the floor and was living in Toronto as somebody who was not from Canada. And, you know, I was just sick as hell, like crawling to the bathroom, like sleeping 18 hours a day. The whole nine. And I'd been really really deeply involved in anarchist of color and prison abolitionist and antifascist organizing and lots of stuff. I had a community, but it was 1997, so most of my community was just like, "What you're sick? Why didn't you make it to the meeting? We have to write all the prisoners with the [untranslatable]." And I was just like, "I just.... Okay, great." Like it was a really different time. There was no GoFundMe, mutual aid, Meal Train, someone brought me some soup. Like, know you, we weren't really doing that. And people really did not have a consciousness around, "You can be a 22 year old brown, nonbinary femme and be really, really sick and be disabled." So something I think a lot, and I've said before, is that disabled people are really used to the concept that no one is going to save us and we are really not surprised when state systems abandoned us because we live in that all the time. And so I was just like this little 22 year old sicko weirdo who'd read my Octavia Butler--and, in fact, that was part of the reason why I was like, "Toronto, great, there's gonna be more water and less heat." Okay, wasn't totally right about that. But, you know, I mean, I really had to save myself and I kind of was like, "Alright, I don't have..." Like, I'm working off the...I'm working under the table. I have hardly any money. I'm gonna make my own herbal medicine. I'm gonna grow a lot of what I eat from my backyard. I'm going to store water. I'm going to run a credit card scam and get a lot of dried goods and live off of those for like a year. [Margaret Hell Yeahs] Yeah, stuff like that. I feel like from there, over the last, you know, 26 years like it's....like, that's the route. The route was, you know, similar to a lot of people, I think of my generation, we were like on the cusp of looking at the current crises of like hot fascist war, hot eugenics war, hot climate crisis, and being like, "It's coming," and I started being like, "Yeah, like don't...don't think that it's all going to work out okay and that somebody else is going to fix it for you." So, I would say that's where my initial route--and then do you want to jump in? Or can I jump ahead like 20 years or something? **Margaret ** 05:10 Honestly, you could jump ahead 20 years later. I'm gonna come back and make you talk more about Octavia Butler. But we'll do that later. **Leah ** 05:16 Let's talk more about Octavia Butler because I have a lot of stuff about Octavia Butler and how she thought of--and I think sometimes misused--like nowadays [this is probably not the word but it's untranslatable] and also about disability. [Margaret "Oooohs" curiously] I know. We can get to that. Okay, so that's one route. And then, you know, I mean, I was always kind of like a little weirdo, where it's like, yeah, I grow most of my own food--or as much as I can--and it's not a fun green hobby. It's like, I'm broke as fuck and I need to grow a lot vegetables that fucking, you know, I can mulch and that can stay growing into December, you know? I stashed stuff. Something I also think a lot, is that as disabled people--and we talked about this a little bit when we're emailing--I think we're always prepping whether we call it that or not. Like most disabled folks I know just do shit. Like if you get a prescription and you have extra, you store it, you know? Like, if you can get a double dose, you put that aside. And then maybe you have it for yourself. Or, there's so many disabled mutual aid networks I've been a part of where someone's--I mean, before Facebook clamped down, this is really common on a lot of Facebook disabled groups--someone would be like, "Yo, does anyone have an extra five pills of such and such?" and I've seen total strangers for 15 years of disability justice be like, "Yep, what's your address? I do. I'm gonna mail it to you. I have my old pain meds. I've got this. I've got that." But, um, yeah, like doing the jumping forward that I promised you, so for people who don't know, disability justice as a movement was founded around 2005 by a group, a small group of disabled Black, Asian, and poor and working class, white disabled folks, who were all pretty, you know, gay, trans, and radical. And they were like, "We want to bring a revolutionary intersectional out of our own lives and experiences and issues. We want to create a disability movement that's for us and by us that's not just white, single issue, often cis, often male, often straight." Like, we want to talk about the fact that 50% of bipoc folks who were killed by the cops are also disabled, deaf, neurodivergent, etc... just to give one example. So, you know, that was '05 in Oakland, you know, Patti Burn, LeRoy Moore, Stacy Milbern, Ely Claire, Sebastian Margaret, Stacey Milbern Park, you know, the six. And I was living in Toronto and I moved to Oakland in '07 and I was kind of around for some of the beginnings of it. There's two stories I want to bring in. One actually predates my move. It was right when I was getting ready to leave Toronto, I got invited to go to this reading by a bunch of queer--I think all white--disabled radical folks. And I was just like, "Oh?" And I did the whole, like, "Am I really disabled enough?" and then it was like, "Oh, it's gonna be really depressing." And then it was really awesome. And I was like, "Whoa, disability community. Life saving." But it was kind of one of my moments of being brought into the disability community because there was this writer who was there who, their reading series was actually a choose your own adventure where there's four disabled, queer, and trans folks who are having a sex party and the zombie apocalypse happens. And then they have to figure out how to survive it without abandoning each other. And it was all like, "Okay, you all get to the van, but then there's no ramp. What do you do? Oh! You get this accessible ramp, but it smells like perfume and somebody has NCS. What do you do? And I was just sitting there with my mouth open--and it was also interwoven with like, 'Yeah, and then somebody's fucking somebody else with like, you know, a dildo strapped to their prosthetic,'" and I was like, wow, I fucking love disability. Like, sign me up. But I gotta say briefly, that was one of my first examples of like, you know, there's a really important phrase in Disability Justice, which is, "No one left behind, " right? Like, that's one of the core organizing principles. And that was kind of.... Before I even heard that phrase, I was like, "Fuck like this is..."--because I'd been around antiauthoritarian, quasi prepper, like "shit's gonna happen, we have to get ready." But I was always kind of quiet in the corner closeting my disability being like, "Well, shit, like, what if I don't have my meds? Or what if I'm too.... What if I can't run away from, you know, the Nazis or the zombies because I have a limp and I walk with a cane? Like, what if?" And that was my first example of this cross disability fantasy space of like, "We're going to escape together and we're not going to let anyone get eaten and it's going to mean really being creative about access stuff." Okay so jump ahead to, right, then I moved to Oakland and then I ran into actual Disability Justice community through Sins Invalid, which is an incredibly important foundational Disability Justice group, and through a lot of friendships I started making with other QTBIPOC disabled folks and my really, really good friend Stacy Park Milbern, who, people should totally know her work. She's incredible. She was one of the best movement organizers that the movement has ever seen. And we met online. And she was living in Fort Bragg, North Carolina with her family on the base because her family's military. And she was a queer southern, working-class, Korean and white, you know, physically disabled organizer from when she was really young. And then she was like, "Okay, I love my family, but I'm literally hiding my gay books in the wall because my mom's Pentecostal." So, yeah, and she's like--I literally realized she tells the story a lot--she's like, "Yeah, like, I realized I hadn't really left the house for a couple months and like, this is gonna be it," and she's like, "I was literally watching Oprah. And Oprah said, 'No one's coming to save you.'" And she was like, okay. She's 21 years old. And then through online, disabled, queer of color community there was this--or she organized--this initiative called To the Other Side of Dreaming where she moved crosscountry with Mia Mingus, who's another queer Korean organizer who was a friend of hers, ad moved to the Bay Area. And so that was around 2010-2011. And then in 2011, what happens but the Fukushima nuclear accident, right, disaster? And we're all on the West Coast--and it's completely ridiculous bullshit, looking back on it now--but all of these Bay Area folks were like, "Oh my God! Radiation!" And some people pointed out, "Look, you know, we're not.... There's...it's a big ocean. The people who really have to worry are in Japan and areas around it, so whatever?" But it was one of those times where we were like, fuck, this is a really big nuclear accident and we are sort of close and it's making us think about disaster. And I remember just going to fucking Berkeley Bowl, which is this big, fancy, organic supermarket and people had bought out all of the burdock all the fucking seaweed. And I was like, "Oh, my God, these people." But out of that, Stacy started having conver--and I and other people who were in our organizing network of disabled, majority BIPOC--were like, "What are we going to as disabled BIPOC if there is an earthquake, fascism, like another big disaster? And Stacy said, really bluntly, she's like, "You know," and she was a power wheelchair user. She used a ventilator. You know, she's like, "Yeah, I am supported by electricity and battery dependent access equipment." And she's like, "Well, I'm going to be really honest, my plan has always been, if something happens, I'm just going to lay down in my bed and die, because I don't think that any emergency services are going to come save me and the power is going to run out in 48 hours. And then we were like, "Okay, that's super real. What if, through our amazing collective access stuff we're doing, we could figure out something else?" And we had this meeting at Arismendy bakery, which for folks who know, is like a worker owned co-op chain, Our friend Remedios worked there. It's wheelchair accessible. We met there after hours. And it was just like, 12-15 of us who started just sitting there and being like, "What are the resources we have? What are the needs we have? And we made this map, which I still have, which I think I shared with you, which is just like, "Apocalypse, South Berkeley/Oakland Map 2011," where we were like, "Okay, you know, when the power goes down, the communication goes down. We're gonna meet at this one traffic circle because people who are wheelchair users can roll up. And we're gonna bury note paper in a mason jar with pens and we're gonna leave notes for each other. But we're also going to agree to meet there the day after at noon." And I was like, okay, my collective house, the first floor is wheelchair accessible. We have solar, we have a landline. And we have a lot of space. So like, let's meet there. And then someone was like, "We've got the one accessible van. And we know, it's only supposed to fit 4 people, but we can fit like 12 in there." And we started.... Like, I just think about that a lot because it's, I think it was a really important moment where it was important...the stuff that we did like that--you know, the actual strategies and the resources we started talking about--but it was also that it was the first time in my life that I was like, "Okay, we're not--not only are we not going to just die alone in our beds, I'm also not going to be the one person who survives. Like, I can actually survive with, and because of, other people. And we're all disabled BIPOC with a couple of disabled white folks. And we can actually collectively strategize around that. And this will be my last leap forward, because I see that you're like, "I want to ask you stuff." So, you know, eight years go by, and in that time we all do an incredible amount of Disability Justice organizing and strategizing. And, you know, in 2019.... And a lot of it started to be around climate disaster on the West Coast. Like, I moved to Seattle in 2015. The wildfires started being really bad a year or two later. A lot of us were involved in mask distributions, just spreading information about smoke safety and survival. And then 2019 was the infamous year where the wildfires came back and Pacific Gas and Electric, in all of its fucking glory, which is the main--for people who don't know--it's the main utility electrical company in Northern California. They announced two days before wildfires were going to really impact the Bay, they were like, "Oh, so we've decided that our strategy is going to be that we're just going to shut down all the power in Northern California. **Margaret ** 14:52 No one uses that. [Sardonically] **Leah ** 14:53 No one uses that. And they're like, "Oh, if you have a medical need, call this number, and we'll make sure to leave it on at your house." and Stacey was, "Okay." She had just bought her house, the Disability Justice Culture Club in East Oakland, you know, which was her house but also a community center, de facto community center, that housed a lot of disabled folks of color. And she was like, "I was on the fucking phone for eight hours. Like, I never got through." And she and some comrades started this campaign called Power to Live where they were like.... It started out as, "Okay, we can't save everybody, but we're not going to just lay down and die. What do we do?" So it started out as like, okay, let's identify who has housing that still has power. There's some people in Richmond, there's some people in this neighborhood, but then it also developed into this thing where it was just this amazing crowdsource survivalist resource where it was everything from, she's like, "Here's a number. Here's an email. If you need something, text us, call us, email us. We have a team of eight people. We'll figure it out. If you have something to offer, do it too." And then some of it was that people were sharing everything from generator information, to generator shares, to people in different areas-- like I was in Seattle and we were like, "Okay, we will mail you generators and air purifiers, because it's obviously all sold out in the Bay, but we can get it here and get it to you." The thing that always stands out to me is people being like, "Oh, yeah, here's how you can use dry ice and clay pots to keep your insulin cold if refrigeration goes down." And there's a lot more I could say about that action and how amazing it was. But for me, when I think about the through line, I'm like, that moment in 2011, when we all got together, and were like, "What do we do?" we were prepping for what we couldn't fully predict, you know, the exact manifestation of eight years later. We're there and we're like, "Okay, there's wildfires, there's smoke, there's no fucking power, and we've not only built our organizing base, we built our relationships with each other so that we can actually trust each other and more or less know how to work together when this shit actually is hitting the fan to create something that's really life giving. Okay, I'll shut up. That was a lot. **Margaret ** 16:52 Now I have so many questions about all of it. **Leah ** 16:53 Yeah, ask me all the questions. **Margaret ** 16:55 Because there's a couple...there's a couple of questions and/or feedback that we get with Live Like, the World is Dying a lot. And some of them are very specifically disability related, and you covered most of them, but I want to highlight some of them. Like a lot of people write and are like, "Well, I rely on the following thing that is provided by civilization. So my plan is to lay down and die." Right? This is a--and I know you've kind of answered it--but I.... I want to ask more. Okay, I'll go through all the things. Okay. So to talk more about what "No One Left Behind," means? And then the other thing that really stands out to me is that, you know, when we were talking, when we were talking about what we were going to talk about on this on this episode, I was saying, okay, we can talk about, you know, making sure that preparedness is inclusive and open and includes disabled folks, or whatever, and you pointed out, really usefully, the, the necessity to reframe it. And I think that the story you just gave is a really beautiful example of this, where it's less about, like, "Hey, make sure to pay attention to the people who need canes," you know, or whatever, right? Like, you know, "make sure you keep track of folks based on disability." And more than like the thing you just described, is the thing that we're always trying to push, which is that you need to make a list of all the resources and needs within your community and then figure out how to meet those needs and instead of assuming that we can't meet those needs, figuring out how to actually do it. And so I love that it's actually like.... It's actually disability justice movements that we should be learning from, I mean, or participating in, depending on our level of ability, or whatever, but I just find that I find both of those things really interesting. And so I wonder if you have more that you want to say about alternatives to laying down and dying, and specifically, to tie into the other thing that I get asked the most or that I get the common feedback is--because we talk a lot about the importance of community for preparedness on this show--a lot of people don't feel like they have community and a lot of people write to be like, "I don't have any friends," or "I don't know any other people like me," or, you know. And so, I guess that's my main question is how do.... [Trails off] Yeah, how do? **Leah ** 19:22 So how do you make community when you don't have community? Alternatives to lying down and dying? And was there a third one in there? **Margaret ** 19:28 I was just highlighting how cool it is that y'all sat there and made a list of resources and needs, which is exactly what.... Instead of deciding things are impossible, just being like, "Well, let's just start doing them." You know? **Leah ** 19:40 And I think.... Okay, so I'll start there. Like I think that like.... You know, Corbit O'Toole, who's like a, you know, Disability Rights Movement veteran and like older Irish, disabled dyke, you know, in Crip Camp, the movie, she's like, "Disabled people live all the time with the knowledge that the society wants thinks we're better off dead," right? Like one...back in the day, you know, there's a--I think they're still active--one of the big Disability Rights direct action organizations was called Not Dead Yet, right? [Margaret Hell Yeahs] I think this is the thing is like I think that sometimes abled people or neurotypical people are not used to sitting down and making the list. And I think that even if disabled people aren't preppers, we're used to being like, "Okay, what do I need? Fuck, I need somebody to help me do my dishes. Oh, I can't bend over. I need to figure out what is the access tool that will allow me to pick up something from the floor when my that goes out? Like, if my attendant doesn't show up, can I have a..." You know, like, my friends always like, "Yeah, I've got a yogurt container by the bed in case my attendant doesn't show up so I can not piss the bed. I can lean over and piss in the yogurt container." Like there's a--and I think that.... God, I mean, there's been so many times over the years where I've done or been a part of doing like Disability Justice 101 and me and Stacy would always talk about crip wisdom and crip innovation and people will just look blank like "What are you talking about? You guys are just a bunch of sad orphans at the telethon." It's not just about making the list, it's also about how disabled disability forces you to be innovative. Like, Stacy would always share this story where she's like, "Yeah," like, she's like "Crip innovation is everything from," she's like, "I save a lot of time sometimes by pretending I can't talk when people come over and want to pray over me. You know, I just act like a mute and they fucking leave and they go on with their life," and she's like, "You know, I realized one day, if I took my sneakers off, I could ramp a step if it's just two steps. I could just put them there and I could roll up." Or I mean, there's a million examples.... Or like, because I think it's about prepping and about making the lists and it's also about whatever you prep for, there's always going to be the X Factor of "Oh, we didn't fucking expect that." And I think that's where a lot of prep falls apart is people have their "Dream Bunker." They're like, "Oh, okay, I know exactly what the threats are going to be." And then of course, it doesn't fucking happen that way. I really hope I can swear on your show. **Margaret ** 21:46 You can. Don't worry. **Leah ** 21:47 Great. So, I mean, one example I could give is I'm remembering at, you know, a Sins show when we were in rehearsal, where everyone drove over from Oakland in Patty's wheelchair accessible van, and then the ramp broken wouldn't unfold. So we just were like, alright, who do we know who has welding equipment? Who do we know has lumber? Like, I think we ended up going to a bike repair shop and then they had tools. And then we're like, okay, we'll just bring the rehearsal into the van and do it that way. Like, you have to be innovative. And that's a muscle that I think society doesn't teach you to flex and that often, I think that even people who.... I think there can be a lot of eugenics in prep, you know, whether people are overtly fascist or not, there's a real belief of like, "Oh, only the strong and smart," --which looks a certain way-- "survive," and that "We should use rational thinking to make it all work out." And I think a lot of crip intelligence or wisdom is actually knowing that shit can go sideways 48 different ways and you have to adapt. And you have to just kind of be like, "Well, let's try this." So I think that's one thing. And I think, you know, one thing I'll say is, yeah, just speaking to kind of the reframing we were talking about, I think it's less like, "Oh, remember the people with canes," but, I mean, that's good, but also knowing that we're already doing it and that abled people actually have a shit ton to learn from us. But also, I mean, something.... I mean, the title of my last book is "The Future is Disabled," and it comes from something--it's not unique thinking to me--it's something that a lot of disabled people have been thinking and saying throughout the pandemic is that we were already at like a 30% disabled world minimum and we're pretty close--we're probably at majority disabled right now. Because what, 2% of the world didn't get Covid? Like, how many people have Long Covid? How many people have complex PTSD? We're all sick, crazy, and, you know, needing access equipment. Disability is not out there. It's in here. Like there's no such thing as doing prep that's like, "Oh, only the three Uber Mensch are gonna survive." Like fuck that. And that actually--I mean, sorry, this might be a side note, but a lot of people have probably seen The Last of Us. And I'm just gonna SPOILER ALERT it. You know that famous episode three of those two gay bear preppers in love? Yeah, I loved a lot about it. I was so pissed at the ending, which I'm just going to spoil. So you know, the more artsy, non-prep guy....[interrupted] **Margaret ** 21:47 Yeah, they don't survive. **Leah ** 22:47 Well, no, but like, not only did they not survive but one of them gets chronically ill. And I was just like, grinding my teeth because it's like, "Oh, he's in a wheelchair. Oh, his hand tremors." And then they end up deciding to both kill themselves rather than do anything else. And I was so furious at it because I was like, these are two people who are so innovative. They have figured out all kinds of problem solving. They have an entire small city for themselves. And it's all like, "Oh, no, he can't get up the stairs." And I'm like, really? There was no accessible ranch house you couldn't of fucking moved to? **Margaret ** 24:38 Or like build a bedroom on the fucking ground floor. **Leah ** 24:40 Or youcouldn't get meds? You couldn't? I mean, when his hand was shaking, it was like, "Oh, it's so sad. He's being fed." I'm like, there's tons.... First of all, it doesn't suck to be fed. A lot of things that seem like a fate worse than death are not when you're in them. And also, there's like all kinds of adaptive utensils that they could have fucking raided from medical supply if he wants to feed himself. Or I'm sorry, there's no cans of Ensure? They absolutely have power. They couldn't have made smoothies? Like, what the fuck is this? But beyond that--and I think that a lot of people who have talked about that episode did, I think, have some good analysis of it where, you know, the whole way they set up their prep was they were like, "Oh, it's just the two of us," and the one super prepper guy was like, "I don't even want friends to come over." And the other guy was like, "Hey, actually, we need to make alliances because there's things they have that we don't. And we also need more than just the two of us because I love you, but I'm gonna kill you." And I think that's something to think about is really moving away from the idea that just your little you know, the utopic queer rural community that so many fucking city queers fantasize about or, you know, lover are going to be enough, because it's not. So that actually leads me to, "I don't have community. Where the fuck do I get it?" And I'm like, yeah, that's super real. Right? And I think it's something I actually wrote about in "The Future is Disabled" is that I have people be like--when I write about different crip communities, just even when I talk about stuff on Facebook.... Like my friend, Graham Bach, it's going to be his second year death anniversary in like two weeks, and he was like, you know, white, psychiatric survivor, super poor, amazing sweetheart of a human being, he died.... I mean, he died in his, you know, rent to your income apartment because he was really afraid to go to the hospital and he had cardiac stuff going on. And he was an anarchist, he was amazing, kind, complicated human being. And, I was writing about, like.... I'm going to tell the story and there's a couple things I want to pull out of it. So I was writing about meeting Graham when I was in my early 20s through radical Mad people community, and somebody was reading it and was like "That sounds so great." And I was like, "Yeah, it wasn't utopic. Like, I had to yell back at Graham because he would scream at me and I'd be like, "Shut the fuck up!" Like, there was so many fights. There was so much racism. There were so many older white cis dudes who had electroshock who were jerky or gross, you know? And I guess that was the thing is, I was like, they're like, "Well, how did you find each other?" And I was like, it wasn't perfect. Also, it was very analog working class. Like my friend Lilith Finkler, who is an amazing Moroccan, Jewish, working-class queer femme psych survivor, she would just go to the donut shop where everybody poor hung out and would talk to everybody who wass there who wass crazy who no one wanted to talk to and be like, "Hey, do you want to come hang out at this meeting at the fucking legal clinic? We have a room. We have a snack plate. I'll give you tokens. Let's organize." So I think that's the first thing is that it's not--and I don't mean this in a finger-wagging way--it's not automatic. And also, one of the really big ways that community is often ableist, and that a lot of us get cut out from it, is that a lot of us who need it the most are not particularly easy to love in ableist neurotypical worldview. It's like we're cranky, we're wounded, we're in a bad mood, we're weird. So a lot of the time, I think it's thinking about, first of all, what's one step, one move you can take towards it. Like, can you make one fucking acquaintance and build it. And really think about what it would mean to build some kind of relationship. I think the other thing that I really want to highlight is that a lot of the communities that I see that keep each other alive, that I'm lucky to have been a part of making and being supported by in disabled community, they're not static and they're not perfect. Like, I have networks with people who piss me the fuck off and who, you know, I've sent 20 bucks to people who I'm just like, "I really don't like you, but I can see that you really don't have food," you know, and we're not going to be friends and we're not going to like each other, but I don't want you to die. And that's not...I mean, it's bigger.... There's also people who I'm like, "Okay, you're my ex-abuser. I'm not gonna give you $5. Someone else can give you $5. **Margaret ** 28:42 There's this person who puts a lot of their effort into talking shit on me on the internet and I...they're also broke and have a lot of chronic health issues and I send them money every month. And every now and then I'm like, could this like...could you stop talking shit now? **Leah ** 29:03 I think this is the thing sometimes is like, hey, how about this is the deal, like maybe just say "Thank you," or maybe just talk shit even like 20% less? Because you know, I'm really doing we keep us safe here. I just really want a "thank you." **Margaret ** 29:16 I don't want you to die. Like, I don't want you to starve to death, but I really wish you would be a little bit more open minded to people having different opinions on yours. **Leah ** 29:26 Oh yeah, nuance, right? Yeah, it'd be fucking nice. **Margaret ** 29:29 God forbid. Anyway. **Leah ** 29:31 No, it's good. I guess my TLDR would be to start where you are and start with "what's one thing you can do? What's one person you can reach out to?" And I think, you know, I don't know if this is true for everyone who reaches out to you and it's like, "Well, I don't have anybody," but I think that social media and online connectivity is a real double-edged sword because for some of us who are isolated, it can create both online communities that can sometimes become in-real-life community and, either way, can be sources of some community or support. But I think.... I mean, you know, I'm a Generation X'er and I've just seen social media get more and more chokehold and just turn into fucking the panopticon meets a mall, you know? [Margaret laughs] And I think it's hard because 12 years ago I was part of really early online disabled spaces, which were great because so many people were like, "Well, I'm so isolated in my small town or in my city," or "I can't leave bed, but this is great. I'm meeting with other people and we're building these connections and it's actually more accessible for me to be real about my stuff from like my bed with a heating pad." And now I just think it's so chokeholded that it's hard for us to find each other. So it's much more common for people to be like, "Wow, I'm seeing all these people who have millions of followers and a shiny brand and I just feel like even more of an isolated loser." And then at the same time, I think people are like, "Well, how did people meet each other before this?" And I was like, "Yeah, like, you go to the coffee shop or the donut shop. You put up a flier. You go to the library. You like, I don't know. I mean, I just remember people I met on the food stamps line, you know, when we got there at six in the morning. And not everything's gonna stick, but maybe something sticks. And I also think about like, I'm going back to 13 years ago in early Disability Justice community spaces where--I mean, I think back to [untranslatable] when I went back to Toronto--which, yeah, big city--but I remember I had so many people come to me and be like, "You're..."--because I was starting to be more out about disability, cuz I was like, "I'm in the Bay and there's these wild people who talk about it and they're not all white people." and so I have so many, especially Black and brown disabled femmes be like, "Hi, you don't really know me, but I have fibromyalgia too," or "I have Lupus too. And like, no one I know talks about that. How do you do it?" And I'm specifically thinking about this time that this person I'm no longer in touch with--but we used to be friends--who's like, you know, queer, brown nonbinary person was like, "Let's just have a meet up of other chronically ill femmes of color," which is how we were identifying a time, and it was four of us, four heating pads, a bottle of Advil, and just very tentatively starting to share things about our lives. And I was like, "Yeah, that was four people." But a lot of that hang out then rippled outward. And it was like, I think it's also important to be like, it's scary to build community. Some tools I want to shut out like, so Mia Mingus, who I mentioned before, she has a lot of really great writing on her blog Leaving Evidence and she created this tool a long time ago now--that some people might be familiar with but for folks who aren't--it's, you know, it's her tool that she calls Pod Mapping. And she actually created it as part of a collective she founded called the Bay Area Transformative Justice Collective that was working on doing transformative justice interventions into intimate violence, specifically childhood sexual abuse a lot of the time, and she had this framework that I find really helpful. She's like, "A lot of..." she was talking about in community accountability, transformative justice spaces and she made a really good point where she's like, "Sometimes we talk about like, 'Yeah, bring in the community. Like, everyone has a community.'" And she's like, "Most people don't have a fucking community, let alone one that can interview in childhood sexual abuse." So she created this tool where she's like, "Let's broaden the idea of what community is." Like, maybe it's that one cousin, that you only talk to once a year, but you could call them in a jam, or it's this hotline, or it is like, yeah, they're a weird church, but you really like their food banks. She's like, "You have to really bring in.... Like, start where you are and do the resource mapping we were talking about" I really liked that tool a lot as a place for people who are like, "What's my community?" because I think it's a big word and really being like, "What does that even mean to me?" and like, "What's one place that can start building it?" And I also want to shout out, Rebel Sydney Black, who's a friend of mine who passed this June, at the beginning of the pandemic, he created this tool called Pod Mapping for Mutual Aid that was specifically aimed at disabled folks who were trying to pod map during Covid--and we can provide the link and stuff like that--but I would say that those are two places to start and then I want to get to alternatives to lying down and dying. And then I'll stop. **Margaret ** 34:04 Okay, wait, wait, before we get to that I want to talk more about the building community thing. **Leah ** 34:08 Yeah, please. **Margaret ** 34:09 I think you brought up a lot of really interesting points. And one of the things that I really like about it, you know, talking about having like...you're broadening the idea of what counts as community, which I think is really useful. And one of the things I realized is that a lot of times when I was younger, I was like, "Y'all say 'community' and you just mean the people that you like," right? And that didn't make any sense to me. Community seems like the people where you have a shared interest, whether the shared interest is you live on the same block, or whether the shared interest is an identity, or whether the shared interest is an interest that you're trying to see change, or whatever. It doesn't mean people you like. It's a different thing. Friends are the people I like, right? Well, mostly. I'm just kidding. I love all of you. I mean, there's a lot of people I love that I don't always like. Anyway, so I don't know, and so I think that one of the things that stuck out with me about what you're gonna say and I want to highlight is the idea that--or maybe I'm misreading it--but like "pick issue to work" around seems like a good useful way. Especially if you struggle to just have friends, right? That's not like the thing that you're good at. But maybe there's a thing that you want to work on? Or having that meetup where it's like, oh, all the following people who have the following things in common, let's meet up and talk about it. Or honestly, activism is a really good way to meet people and work closely with people about things. And it doesn't necessarily have to mean these are now your friends. But they can be people where you rely on each other. And that doesn't have to be the same. I think about it a lot because I live in a fairly isolated and rural environment where there's not a lot of people around me who are culturally.... Whatever, there's not a lot of out, queer people where I live. There's not a lot of punks. And I'm like, that's okay. I talk to my actual neighbors instead. I mean, some of them, not all of them, but most of them, you know, they're who I would rely on in a crisis, because they're right there. It doesn't mean that we have the same ideas about a lot of stuff, you know? But we have similar ideas, like, "Let's not die," right? And so that's enough sometimes. Anyway, I just wanted to.... **Leah ** 36:12 No, I really appreciate it. And I mean that makes me kind of think about, when you were talking, I was like, yeah, you know, there's friends, there's communities, and then there's survival networks, which can include contacts, right? Because I just think about what would I do right now, if some should happened? And I was like, I've got long distance kin and long term friendships and relationships ofvarious kinds and I also have--because I moved to where I live, which is like semi-rural, but definitely more rural than where I've lived before--and I'm just like, yeah, I have a small number of friends. But there's like people who I know who I can...who are neighbors who like, maybe we don't know a shit ton about each other but I could be like, "Hey, this thing?" or "Hey, do you have water?" or, "Hey, let's do this." I think it's a lot about thinking about what are your goals? Is your goal intimacy? Is your goal survival? Is your goal friendship? Because you need different levels of trust and commonality depending on those things, right? I also think, and this is the thing too, I think something.... I think a lot of times because I've had people be like, "Well, I don't have community," also, I've heard that. And I think that a lot of times the context, I hear it in is people being like, "Well, I have care needs, but I don't have any community." So then there's also the really big thorny question of "need" and like being cared for is actually very complicated. It's very risky. It's very vulnerable. It's not safe a lot of the time. It may feel a lot easier to just be like, "I don't have any fucking needs." And so there's a lot, I will just say that there's a lot of unpacking that needs to do around like, "What would I need to be cared for? What are my lower risk needs that I need help with? What are my higher risk needs?" right? Like, there's people who I can.... There's some needs I have where I'm like, I don't need to trust you super, super deep politically or on an intimate level to let you do that. There are certain needs where I'm like, that's only going to be people where we've really built a lot of fucking trust because if this goes sideways you could really stuck with me. Right? And I think that when you're starting from nowhere, I think often where people get stuck is like, "Where I am feels like I have nobody and nothing. And I want to get to like the thing I've read about in your topic science fiction, where you know, it's Star Hawk and everybody loves each other. And how the fuck do I get from A to B." And I think the solution is like, yeah, you're not gonna get to fucking "Fifth Sacred Thing" right away--and that book is complicated. **Margaret ** 38:29 Yeah, It was very influential on my early.... **Leah ** 38:31 Oh yeah, when I was 18, I just wanted to fucking move there. And now I'm like, "Oh God, this is embarrassing. There's some shit in here." I'm like, "Wow, everybody's mixed race, but everyone's Black parents are dead." Wow. Cool. Nobody really thinks about race. I'm like, I'm gonna throw up. And like, you know, BDSM is just violent....Okay, sorry. We're not going to get into that. **Margaret ** 38:47 Oh my God, I don't remember that part. **Leah ** 38:49 Oh, yeah. No, where it's so violent. Like, "We're just loving." And I wrote a really no passion paper for school, because we actually had to read it in a college class I was in, and I was like, "Why are they not into leather sexuality?" And my professor was like, "Okay, 18 year old..." but yeah. **Margaret ** 39:04 I mean, legit. You 18 year old self had a legitimate critique. **Margaret ** 39:08 Yeah. **Leah ** 39:08 Yeah, no, there's a lot there. But, um, but jumping back, I guess it's just like, you know.... And I think this feels like disabled wisdom too, it's like, what can you do with the spoons or the capacity you have? Like, what's one move you can make that small? And then can you build on that? Yeah, but can I talk about alternatives to lying down and dying? **Leah ** 39:28 Yeah. Well, I think...I mean, this is the thing, is like, I'm a survivalist, but I'm not like anti-civilization in the ways that some people are. Like, I want meds, you know? And I think that's something that other crips I know talk about a lot, which is like, you know, we're really against this way that some people, including some people who would like align themselves with like Healing Justice who are like "We're like, oh, yeah, we just have to go back before colonialism and capitalism, and just everyone lived on herbs and it was great." and I was like, "Nah, bitch, I need surgery and meds." Like I want it all. Like, I love non-Western pre-colonial traditional healing. Absolutely. And I've had friends who died because they didn't get their surgeries on time. Like my friend LL died because nobody would give him a fucking kidney because they said he was too fat. And I'm just like, my good future involves.... I mean, and he's one of millions right? So like, my good future involves that we have surgical suites. And I'm just like, you know, honestly, also, a lot of times that worldview just seems so white to me, because I'm just like, listen, a lot of like, global south places figure out how to have field hospitals, right, in really dire and low-resource situations. So I'm sorry.... **Margaret ** 40:40 I mean, only Europoe's ever figured out surgery. No one else has done surgery until Europe showed up. [Said sarcastically implying the opposite] **Leah ** 40:45 Yeah, not fucking ever. [Also said sarcastically] **Margaret ** 40:46 Said the people who are like, "bite down stick and I'll saw your arm off." **Leah ** 40:49 Yeah, so I mean, I guess one thing I would just say is like, I would say that and I would say like, you know, really...I want to like lift up and encourage people to look at--and they can be hard to find--but look at cultures, look at organizing initiatives where people were like, "We can have our own ambulance, we can have our own like..." And when that's not there, to think about what it would mean to have medical care after the apocalypse, right? What would it mean to make hormones, make drugs, synthesize chemicals, and it's not impossible. I think that we're still in the in between of like, okay, we gotta figure out how to do that. But, um, you know, I'm thinking about, Ejeris Dixon, who's my friend and comrade, and, you know, we co-edited "Beyond Survival" together, which is a book we wrote that came out right at the beginning of the pandemic about stories and strategies from how people are actually trying to create safety without the cops. Ejeris always talks about how they were like, "Yeah, like, in Louisiana, you know, in the South, you know, like in the 50s, and 60s, and before I believe, there were all kinds of Black run ambulance and 911 services," because regular 911 wouldn't come to Black communities. Right? And they, I mean, something that I've heard them say a lot over the years is like, "We don't have the people's ambulance yet. But we could." And then it makes me also jump to some friends of mine who were in Seattle who were really active as street medic crew during the rebellions after George George Floyd was murdered by the police in, you know, 2020 in the summer, and specifically in, as some people remember, Seattle managed to have 16 square blocks break off from the city for a while, CHOP, Capitol Hill Organized Front. And so what people don't know is that the cops were like, "Okay, fuck you. We're not going to...If there's any 911 ambulance calls, we're not going to fucking let anyone go in there." So the street medic crew had to deal with a lot of really intense situations. And then after that, like a lot of us folks, like some folks were already nurses or EMTs and a lot of folks who were involved went to nursing school or EMT school and we're like--and I don't know where it's at now--but they were like, "We want to create,"--because right now in Seattle, there's, if somebody is having a crisis on the street, like a medical or a mental health crisis or an altered state crisis, there's no non-911 crisis response that you can call. There's either you go down the stairs to talk to somebody or there's the cops, right. And they were like, "We can get a van. We can get medical equipment from eBay." And you know, I don't know where they're at with that, but they were really organizing around like, "Yeah, we could get a defibrillator. We could get oxygen. We could get blood pressure cuffs. We could get fucking..." you know? And I think that that shit gets complicated in terms of insurance and regulation and the State and the medical industrial complex, but I want us to keep thinking about that. I also, and then I'll wrap up because we have other questions to get to, but it also makes me think about, I mean, I don't know if folks are familiar with Gretchen Felker Martin's amazing science fiction book "Manhunt," right, which is about.... **Margaret ** 43:50 I haven't read it yet. **Leah ** 43:52 It's so fucking good. Okay, so I won't give it away. But just for people who don't know, I'd say it's the one kind of gender sci-fi book where "Oh, a virus, you know, affects people with certain chromosomes or certain that dih-dah-dug that's not TERFy because it's a book that, you know, she's trans, and it's a book that centers trans women and nonbinary communities and there's like one or two trans masculine characters. But the two main trans femme, like trans women characters in the book, they're like, they have to, they're like, "Yeah, like, we're going on raids to get, you know, hormones, and, you know, different, like chemical drugs we need. And we're also figuring out how to synthesize them from herbs and different substances." And it's not easy. It's a struggle. But there are organized communities of trans women and allies that are fighting to do it. And I'm just like, yeah, and I mean, it's an amazingly well written book, and she's incredible, and I fucking loved it. And it's just beautifully written and really just--sorry, I won't gush too much but go read it, it's incredible--I just really also appreciated it because she was like, "Yeah, of course we're gonna get our hormones after the end of the world. Like of course it's possible." And I will also.... I have some criticisms of the ableism in it, but M.E. O'Brien and--fuck I'm forgetting the second author's name, but every you know, "Everything For Everyone," that book. I appreciated how in the good future society, they're like, "Our priority is making sure that insulin and chemical drugs and hormones are accessible and free to everybody." And I was like, I guess I would just push people towards there are ways of imagining the future where we can defeat capitalism but still have medical care of all kinds. We can have Reiki and acupuncture and we can also hormone surgery and transplants. And we might be doing it better because it's not controlled by fucking corporations and assholes. Sorry, that's my soapbox. Um, okay. I will say in terms of people being like, "That's really nice. But what about me?" I would be like, you know, I mean, right now in the war on trans America, there are so many people already who are like, "Yeah, I'm stockpiling meds. I like doing meds trading." I would say it goes back to what we started about, which is like, "Okay, what are your needs? What are the things that you're worried will not be there if the world ends?" Right? And we also need to recognize that the world's already ending and it's ended for some of us a bunch of times already. But I would be like, make that list and then really be like, "Alright, how do I get it?" You know, and if I can't specifically get it, are there like backups that I can get? And it may be stuff that you can research on your own. It also might be stuff where it's like, "Okay, are there trans [untranslatable], disability justice organizations, nationally, globally, locally, that you can hit up and be like, "What are folks thoughts about this? Are there ways that we can resource share?" Because I think it's about pills. I think it's also about durable medical equipment. So in terms of stuff that requires power to live, I think about generators and I think about generator shares. And I think about things like...there's a story when Hurricane Sandy hit New York 10 years ago, there were a whole bunch of us where...there's a guy Nick who's in community who, physically disabled guy, 13th floor, accessible apartment, you know, the lights went out, you know, really dependent on electricity to change out the batteries on his ventilator. There's a whole crew of disabled folks, like people walked up and down those fucking stairs every eight hours to take the spent batteries, figured out, "Hey, you know, what still has power, the fucking fire department." People were walking down recharging the batteries every eight hours. And it was allies, it was ambulatory, it was disabled people who could walk. It was fucking hard. But people were like, we're not.... Nick and his friends were like, "We're not just going to die. We're needed." So I wanna shoutout that and just for possibility modeling, I really want to, one other place I want to shout out, is an org that used to be known as Portlight but was now known as the Center for Inclusive Disaster Strategies, which is a disabled-led organization that is about like, yeah, when there's a climate or other disaster, they figure out ways of getting like accessible fucking evacuation methods to places because they know...we know, there's millions of examples of people who are just left to die in nursing homes or like, "Oops, the bus doesn't have a ramp," or, you know, I really want to name that during Katrina, some people might know about, you know, the situation with the nursing home that was there were a lot of folks who were wheelchair users or had high care needs were fucking killed by medical staff because the medical staff were like, "We're gonna actually euthanize these folks without their knowledge or consent." [Margaret exclaims] Yeah, no, there was actually a movie on HBO about it I think semi recently. Because "that's easier than figuring out how to fucking get people in the medivac ," right? Yeah, and so the Partnership for Inclusive Disaster Strategies, I'm still getting to know them, but I have friends who are involved and they're like, "Yeah, we're aware this is an issue." So yeah, let's work with the fucking Cajun fucking Navy to like make sure that you can get folks with different bodies onto evac boats. Like let's figure out what disabled survival looks like. And I will just say, and this is the last thing I swear, for me, I mean, we all know water is important. Like, I can't lift 54 pounds. Guess what? So can't--which is, you know, a seven gallon right, like a five or seven gallon whatever--I'm just like, yeah, so I can actually have smaller jugs of water that I can lift. So yeah, I have a bug out plan, but I also have a real Shelter in Place plan because I'm just like, yeah, my apartment's accessible for me. So yeah, I got a shit ton of water right here and I'll be good for a while. And I also have a plan B for.... Okay, there's...I've got my filtration equipment, so when that runs out, I'm close to some water sources where I can go and I can filter that shit. And that's me thinking about what works for my body. Think about what works for yours and then plan out from that. Okay, I'll really stop talking now. **Margaret ** 49:44 No, no, but there's so much there. Even just like to go to the weight of water, right? The thing that I ran across that I'm like--I'm reasonably able-bodied and such like that, right--but I live alone and so obviously there's this specific thing where like.... Well, one, I mean, abledness is always a temporary position.... **Leah ** 50:04 Yeah, you're going to get disabled, you're gonna get sick and disabled. **Margaret ** 50:07 Like it literally happens to--unless you, I don't know, die very quickly, very suddenly, probably violently, you're gonna go through a period of disability in your life, you know? And so my argument is that machismo is anti-prepping. And one of the ways that I would say is that like, there's now, I think.... Okay, so cement bags, they come in 50 pound bags traditionally, right? But now there's more and more, I think, there seems to be more and more 30 pound bags, right? And I used to be like, "Oh, whatever, I can lift a 50 pound bag. So I should carry the 50 pound bag." And then I'm like, well, it was not a helpful way to look at it. It is far better for me to just have 30 pound bags of cement because they're easier to carry and I'll get tired less. And I, you know, at the time that I was pouring these bags, I lived up a hill about probably the equivalent of a seven storey walk up to this cabin that I was building, right. And so I had to carry each and every one. It was way nicer that I carry 30 pound bags. And if your preparedness doesn't include the fact that your level of ability will change in different situations, then it's not very good preparedness. And and so like, I don't know, I mean, like most of my water jugs are four or five gallon jugs. I use jerry cans. I think most of them are five gallon. And I hate the six gallon ones and the seven gallon ones. They're just heavy and annoying. And it's like I can give lift them but there's no reason why I should. Unless I'm specifically working on lifting weights. And then the other thing that you talked about that I really think about a lot, you know, is this idea, of does your version of disaster mean that every doctor dies? Or like, does your version of disaster mean everyone who's ever made insulin dies? Like, it's possible. Sure, you could have 90...if almost everyone on Earth dies, then everything is a little different. But most disasters don't actually..... Most disasters destroy ways of living and large numbers of people, but not the majority of people write. Most people survive most disasters. And, people are like, "Well, our organizational systems are what produce insulin," and like, no, people produce insulin and they use organizational systems with which to do it. But different organizational systems can also produce insulin. Like different organizational systems can use the same infrastructure sometimes and make the things that we rely on. And it came up with this like whole thing where people on the internet were like, "Ah, if you're an anarchist, you hate disabled people because in anarchy, you can't have insulin," **Leah ** 50:28 That's gross. **Margaret ** 52:40 It is a complete misunderstanding of anarchism. It is not a lack of organization, it is a different type of organization. **Leah ** 52:46 Anarchy is responsibility. **Margaret ** 52:48 Yes, totally. **Leah ** 52:50 Sorry, sorry. **Margaret ** 52:52 That's why people don't like it. People are afraid of it because they actually have to.... It's the accepting no one is coming to save us except us. You know? No, I love that way of framing and it also annoys anarchists when you tell them this too. **Leah ** 53:07 Okay, well, I mean, you know, so I worked at Modern Times books, which was, you know, is no longer around, but was a long time anarchists and anti authoritarian radical bookstore in the Bay. And we had the only public toilet in all of the Mission because everybody else was like, "No, you gotta buy something." and in my interview, they're like, "How will you make the store better?" And I was like, "I will make the bathroom not smell horrible." Because, you know, it was just like a bust, everyone was pissing in there. And so I taped up a sign that said "Anarchy is responsibility. If you spray the fucking toilet with urine, please wipe it up. Together we can have a toilet." And somebody called me out and was like, "That's capitalist." And I was like, "No, just wipe your piss up or we're not gonna make the revolution. Like, come on." But yeah, they got pissed at me about that. [Both laugh] But yeah, I mean, I think that's a really good point. And it's like, you know, I mean, I think that it does point to, you know, I think a structural problem in a lot of our movements, which is like, yeah, we don't we need more people who know some basics of chemistry and can synthesize stuff. Like, that's, you know, we need more people who've gone to some kind of science or engineering school who can figure out how sewage works and how you synthesize insulin and how you synthesize hormones and like, basic surgery. And I think there's a lot of hopefulness because I--maybe it's just the folks I hang out with--but I have a fair number of friends who are like, "Yeah, I'm gonna be a nurse practitioner. I can give you an abortion. I can sew up your wound. I can help you figure out this thing." And I'd love for there to be more of us who can go to PA school or

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The Black Wine Guy Experience
Navigating the Wine Industry: Perspectives from Importers, Winemakers, and Wine Ambassadors. Recorded at Wine2Wine Verona!

The Black Wine Guy Experience

Play Episode Listen Later Nov 24, 2023 96:26


Welcome back to The Black Wine Guy Experience! In today's BONUS episode from "Wine 2 Wine," we have an exciting lineup of guests joining our host, MJ Towler. Get ready to dive into the world of wine with our special guests: Sofia, Hermione, Alice, Adam, and Michele.Michele, a director at a family-run wine importer and Italian wine ambassador, shares his expertise from Italy and the UK. We then shift gears and hear from Adam and Hermione, who are involved in publishing wine-related books. Join us as they share their insights on the importance of storytelling in the wine industry and their experiences with AI.Alice kicks off the conversation by sharing a memorable wine experience with a story about Shiraz from Australia, which her partner helped her study blind tastings with. Sofia takes us on a journey through her winemaking ventures in Sicily, particularly on Mount Etna. She reveals the unique qualities of Mount Etna wines and her passion for showcasing quality Italian wines in the US.So grab a glass of your favorite wine, sit back, and enjoy this enriching episode of The Black Wine Guy Experience: "Wine 2 Wine." Cheers!A Massive THANK YOU to Michele Longari, Hermione Ireland, Adam Lechmere, Alice Wong & Sofia Ponzinil!!!To learn more about Hay Wines, click the link!Follow Michele on IG!To learn more about Académie du Vin Library click the link!Listeners can use code BWG5 it will give $5 off all of our books *(with the exception of a couple of distributed titles.)Follow Académie du Vin Library on IG!Follow Hermione on IG!Follow Adam on IG!To learn more about Vin Etude Asia click the link!Follow Alice on IGFollow Tenute Bosco on IG!Follow Sofia on IG!____________________________________________________________Until next time, cheers to the mavericks, philosophers, deep thinkers, and wine drinkers! Subscribe and give The Black Wine Guy Experience a five-star review on whichever platform you listen to.For insider info from MJ and exclusive content from the show, sign up at Blackwineguy.comFollow MJ @blackwineguyThank you to our sponsor, Grenache Study. The Grenachenaissance© is upon us! Find out more at Grenache Study Hosted on Acast. See acast.com/privacy for more information.

Read Appalachia
Ep. 10 | Disability Pride Month

Read Appalachia

Play Episode Listen Later Jul 29, 2023 70:22


For Disability Pride Month, host Kendra Winchester is joined by Appodlachia co-host Callie Pruett Schwaber to discuss the importance of disabled people telling their own stories.Things MentionedKendra's interview with Alice Wong on Reading WomenBooks MentionedDemystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily LadeauBlind Man's Bluff: A Memoir by James Tate HillWhat Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa MillerIllness as Metaphor and AIDS and Its Metaphors by Susan SontagSome Days: A Tale of Love, Ice Cream, and My Mom's Chronic Illness by Julie A. StammEl Deaf by Cece BellDisability Visibility: First-Person Stories from the Twenty-First Century edited by Alice WongGuest InfoCallie Pruett SchwaberTwitter | InstagramShow Your Love for Read Appalachia! You can support Read Appalachia by heading over to our merch store, tipping us over on Ko-fi, or by sharing the podcast with a friend! For more ways to support the show, head over to our Support page. Follow Read Appalachia Facebook | Twitter | Instagram | TikTok ContactFor feedback or to just say “hi,” you can reach us at readappalachia[at]gmail.comMusic by Olexy from Pixabay

Disability After Dark
Bonus! Ten Thousand Things Episode from KUOW in Seattle w/ Alice Wong

Disability After Dark

Play Episode Listen Later Jul 16, 2023 19:04


Episode Notes In this special episode, Disability After Dark has partnered with KUOW in Seattle to bring you an episode of one of the most notable podcasts of 2023, Ten Thousand Things, where host Shin Yu Pai -- the current reigning Civic Poet of Seattle! -- sits down with award-winning disability rights activist Alice Wong to discuss her long history of advocacy. From lobbying her university for disability-related curriculum to being appointed to the National Council on Disability, not to mention founding the Disability Visibility Project, Alice is an awesome human being who's disrupting the status quo. Needless to say, this is a “can't miss” conversation, and if you want to hear more like it, be sure to follow Ten Thousand Things on your favorite podcast app. (And tell them we sent you!) With that said, here is Ten Thousand Things. Enjoy! This podcast is powered by Pinecast.

The Chills at Will Podcast
Episode 191 with Sarah Fawn Montgomery, Possessor of a Poetic Sensibility, Chronicler of Nature, the Psyche, and Love's Many Iterations, and Author of Halfway from Home: Essays

The Chills at Will Podcast

Play Episode Listen Later Jul 11, 2023 70:27


Episode 191 Notes and Links to Sarah's Work       On Episode 191 of The Chills at Will Podcast, Pete welcomes Sarah Fawn Montgomery, and the two discuss, among other things, her early reading and writing, storytelling, growing up in Central California, the ways in which blue-collar Americans have been depicted-or not depicted in literature, and salient themes in her essay collection, like nostalgia, father-daughter relationships, cycles of poverty and violence and trauma, and evolving ideas of home.      Sarah Fawn Montgomery is the author of Halfway from Home (Split/Lip Press, 2022), Quite Mad: An American Pharma Memoir (The Ohio State University Press, 2018) and the poetry chapbooks Regenerate: Poems of Mad Women (Dancing Girl Press, 2017), Leaving Tracks: A Prairie Guide (Finishing Line Press, 2017), and The Astronaut Checks His Watch (Finishing Line Press, 2014). Her work has been listed as notable in Best American Essays many times, and her poetry and prose have appeared in Brevity, Crab Orchard Review, DIAGRAM, Electric Literature, LitHub, New England Review, The Normal School, Passages North, Poetry Foundation, The Rumpus, Southeast Review, Terrain, and numerous other journals and anthologies. She holds an MFA in creative writing from California State University-Fresno and a PhD in English in creative writing from the University of Nebraska-Lincoln. She is an Associate Professor at Bridgewater State University in Massachusetts.      Buy Halfway from Home: Essays   Sarah's Website   Review of Halfway from Home: Essays from Kirkus Review   Split Rock Review-Review of Halfway from Home   At about 2:20, Sarah talks about her early relationships with reading and writing, and about how she wanted to write stories about often-overlooked working-class people   At about 4:20, Sarah cites some early favorite books and writers, and she analyzes the ways she reads a favorite, Joan Didion, now differently than she did then   At about 7:00, The two discuss class and how it is talked about in our society (or not) and represented in literature    At about 9:00, Sarah discusses how she got excited about writing-she shouts out to a high school teacher who gave a meaningful and transformative journal assignment and invited Sarah to keep writing   At about 13:00, Sarah references nonfiction writers who thrilled her in college-like Audre Lorde, Sandra Cisneros, and Jamaica Kincaid-and thrill her today, like Chen Chen, Ada Limón, Donika Kelly, Saeed Jones, Dorothy Chan, and torrin a. greathouse     At about 14:40, Sarah recounts the genesis of her Halfway From Home collection and answers Pete's questions about making the individual essays cohere   At about 17:40, Pete summarizes the book's first essay and its “dig sites” and focus on her father's whimsy and her love of dirt-it's called “Excavation”    At about 19:00, Sarah speaks to the significance of “excavation” in the first story and beyond   At about 21:00, Pete compliments the story's “imagined ending” and Sarah speaks about its significance and background    At about 23:25, Sarah discusses the power and symbolism of fire and light, cold and darkness, as featured in her book   At about 26:10, The two discuss ideas of homes, serenity, and respite from traumas and chaos   At about 31:30, The two discuss her essay on cartography   At about 35:40, Pete muses   At about 37:00, The history of Sarah's family in mines is discussed, along with the multiple meanings of “descendants”   At about 40:50, Sarah talks about “complicating humanity,” especially with regards to her grandfather and grandmother   At about 42:15, Pete asks about the end of an essay and how Sarah approached its second-person address   At about 44:20, The two discuss nostalgia and its connections to the essays, the intriguing concept of saudade, and nostalgia's history as something to be discouraged   At about 48:35, Pete recounts how nostalgia has informed the podcast's ethos   At about 50:45, Sarah confesses to being “anti-time” (!) and the two reference a classic Saved by the Bell scene   At about 54:45, Cycles of violence as depicted in the essay are examined   At about 56:45, Sarah reflects on how she sees and saw he father throughout her collection and in more recent times   At about 1:01:00, Pete notes the ways in which women in Sarah's family are portrayed in her collection    At about 1:02:30, Pete compliments a beautiful scene with father and daughter and Sarah talks about the nostalgia associated with parents and childhood-Pete    At about 1:04:45, Sarah shares an interesting new project involving combatting ableist writing as default    At about 1:05:50, The two fan boy/girl over Alice Wong's work   At about 1:06:15, Sarah shouts out her publisher Split Lip Press as a place to buy her book   At about 1:06:45, Sarah gives out social media/contact information    You can now subscribe to the podcast on Apple Podcasts, and leave me a five-star review. You can also ask for the podcast by name using Alexa, and find the pod on Stitcher, Spotify, and on Amazon Music. Follow me on IG, where I'm @chillsatwillpodcast, or on Twitter, where I'm @chillsatwillpo1. You can watch this and other episodes on YouTube-watch and subscribe to The Chills at Will Podcast Channel. Please subscribe to both my YouTube Channel and my podcast while you're checking out this episode.    Sign up now for The Chills at Will Podcast Patreon: it can be found at patreon.com/chillsatwillpodcastpeterriehl     Check out the page that describes the benefits of a Patreon membership, including cool swag and bonus episodes. Thanks in advance for supporting my one-man show, my DIY podcast and my extensive reading, research, editing, and promoting to keep this independent podcast pumping out high-quality content!    NEW MERCH! You can browse and buy here: https://www.etsy.com/shop/ChillsatWillPodcast    This is a passion project of mine, a DIY operation, and I'd love for your help in promoting what I'm convinced is a unique and spirited look at an often-ignored art form.    The intro song for The Chills at Will Podcast is “Wind Down” (Instrumental Version), and the other song played on this episode was “Hoops” (Instrumental)” by Matt Weidauer, and both songs are used through ArchesAudio.com.    Please tune in for Episode 192 with Donovan X Ramsey. He is a journalist, author, and indispensable voice on issues of identity, justice, and patterns of power in América; When Crack Was King: A People's History of a Misunderstood Era comes out on June 11, i.e. the day this episode with Sarah has been published.  The episode will air on July 18.

Down to the Struts
Alice Wong on Voice (from Ten Thousand Things)

Down to the Struts

Play Episode Listen Later Jul 11, 2023 19:42


Check out this amazing episode of Ten Thousand Things from our friends at KUOW in Seattle, featuring a meditation on voice from disability justice activist, oracle, and cyborg, Alice Wong. Ten Thousand Things with Shin Yu Pai is an acclaimed podcast that amplifies heartfelt stories from Asian America. You should definitely check it out on Apple Podcasts, Spotify, or wherever you love to listen—and tell them we sent you! Transcript available here. To hear more from Alice Wong, check out Qudsiya's conversation with Alice in season 3, episode 1 of Down to the Struts. -- Loving Down to the Struts? Support the team behind the podcast with a donation. Leave a review on Apple podcasts. Subscribe to Qudsiya's newsletter, Getting Down To It.

The Blue Suit
Voice

The Blue Suit

Play Episode Listen Later Jun 19, 2023 17:10


This is a story about the way we make a statement. Alice Wong, a Chinese-American disability activist, came into her own as a public personality through creating and hosting a podcast on disabled voices. Her status as a person with a disability in an ableist world gave her access to a world of perspectives and voices that we don't usually hear on public radio. And she prioritized putting disabled voices on the air. But losing her own voice and replacing it with an app forced her to reckon with a new relationship to voice. Related links:Disability Visibility ProjectDisability Visibility PodcastYear of the Tiger by Alice WongResistance and Hope: Crip Wisdom for the People, edited by Alice WongWe can only make Ten Thousand Things because listeners support us. Make the show happen by making a gift to KUOW.And we want to hear from you! Leave us feedback online.Ten Thousand Things is produced by KUOW in Seattle. Our host, writer, and creator is Shin Yu Pai. Whitney Henry-Lester produced this episode. Jim Gates is our editor. Tomo Nakayama wrote our theme music. Additional music in this episode by Jaylon Ashaun and Stan Forebee.Search for Ten Thousand Things in your podcast app!Partial funding of Ten Thousand Things was made possible by the Seattle Office of Arts and Culture Hope Corps Grant, a recovery funded program of the National Endowment for the Arts, plus support from The Windrose Fund.

Real Friends Who Read Books
Disability Visibility edited by Alice Wong

Real Friends Who Read Books

Play Episode Listen Later May 23, 2023 38:14


One in five people in the US lives with a disability. Some are visible, others less apparent—but all are underrepresented in media and popular culture. In Disability Visibility, activist Alice Wong brings together blog posts, manifestos, eulogies, congressional testimonies, and more, creating an anthology that offers a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of the community.  Disability Visibility in one sentence: Mary Paige: I'm just sad.Erica: Remember when I said I didn't like essays at the end of last season? I TAKE IT BACK. Courtney: This made me feel visible. Read along with us! Coming up next:  June: Killers of a Certain Age by Deanna Raybourn July: Happy Place by Emily Henry August: Everything I Need I Get From You by Kaitlyn Tiffany Check us out on Instagram @realfriendsbookclub or visit our website, RealFriendsBookClub.com

KQED’s Perspectives
Alice Wong: I Still Have a Voice

KQED’s Perspectives

Play Episode Listen Later May 18, 2023 2:54


Alice Wong can no longer speak. But she still has a voice.

Crosscurrents
Law And Culture / Bay Poets / Disability Healthcare Gap / Alice Wong

Crosscurrents

Play Episode Listen Later May 16, 2023 26:51


How can lawyers provide equal representation to all? Today, we hear about how one lawyer practices cultural competence in a legal system that often lacks it. Then, we listen to a conversation on how disabled doctors and medical students are working to help their colleagues understand disability. Plus, readings from Bay Area writers. With local music from Periscope.

Raw Material
I Still Have a Voice (Epilogue)

Raw Material

Play Episode Listen Later May 9, 2023 6:03


As an epilogue for the Raw Material: Disability Visibility Mixtape, we're honored to share an audio piece by this season's podcaster-in-residence Alice Wong. The story first aired on KQED Perspectives, a show that features opinions from folks living in the Bay Area. If you haven't already, check them out at kqed.org/perspectives. Thank you for listening and learning with us this season. Full episode transcript available below: https://docs.google.com/document/d/16gg7FbeIus45ltihrb1qA-i3i6xlBgMnwGmHXqVBURc/edit?usp=share_link Episode Artwork by: Jen White-Johnson (www.jenwhitejohnson.com) Episode Artwork Description: Digital portrait of Alice Wong, an Asian person smiling. She is wearing a trach at her neck and wearing a crew neck blouse. She is sitting in her power wheelchair. There is a cream colored circle crown on a purple background.

Real Friends Who Read Books
Book Report: Disability Visibility edited by Alice Wong

Real Friends Who Read Books

Play Episode Listen Later May 9, 2023 21:53


This week RFWRB check in on their progress with Disability Visibility, edited by Alice Wong. Let's get reading! Don't forget to tune in on May 23rd for the full book discussion! We'll see you on the interwebs! Check out our instagram @realfriendsbookclub or our website realfriendsbookclub.com.

Dear White Women
217: The Biracial Asian Experience in America

Dear White Women

Play Episode Listen Later May 2, 2023 38:29


If you're listening to this episode when it's released, we're now in May of 2023, which is also AAPI Heritage Month. There are a lot of names for this month, which is great, as there are also a lot of countries and ethnicities represented by the simple word “Asian”. But one group of people that is often left out of the overarching Asian umbrella are the biracial Asians - and, given our own identities in this space, this is something that we experience regularly.    So, to kick off AAPI Heritage Month from a perspective not often discussed, we're focusing today on our personal stories of being biracial Asian women, and what identity, belonging, and inclusion mean when we look at being Asian in this country through this lens. And, since it's us, we'll be throwing in a little bit of history, laws, and psych along the way.   What to listen for:  Sara & Misasha's personal experiences growing up biracial as one of the OG legally biracial folks in this country's history The census data - and how we could only check one box until 2000! The Loving v. Virginia decision, and how that opened up the door to our families being allowed to exist How we want more Asian people to stop gatekeeping who is “Asian enough” and instead, start banding together with other marginalized groups to push back against White supremacy – because it's all of us or none of us. In this episode, we highlight the podcast Ten Thousand Things.  In many Chinese sayings, “ten thousand” is used in a poetic sense to convey something infinite, vast, and unfathomable. For Shin Yu Pai, the award-winning poet and museologist who hosts the podcast, the story of Asians in America is just that. In Ten Thousand Things, Shin Yu explores a collection of objects and artifacts that tell us something about Asian American life – from a second-hand novel to a blue suit worn by Congressman Andy Kim on January 6. Ten Thousand Things is a vibrant, diverse, and bittersweet celebration of Asian America ... and a challenge for all of us to reimagine stories of the past and future.  Featured guests this season include Disability Visibility Project podcast host Alice Wong; transgender and non-binary, poet and educator Ebo Barton; and NED founder Eason Yang; among others.

Raw Material
Museums w/ Amanda Cachia

Raw Material

Play Episode Listen Later Apr 25, 2023 33:25


In this episode Alice Wong introduces us to Amanda Cachia, an independent curator and critic whose work focuses on contemporary art, activism, and disability language in visual culture. Episode Artwork by: Jen White-Johnson (www.jenwhitejohnson.com) Full episode transcript available below: https://docs.google.com/document/d/1yz6gvmvR623muzyvxbkgHyMyJpYuvPyYHSQ4mu7Qhz4/edit?usp=sharing

OFF-KILTER with Rebecca Vallas
“You Have to Work Until You Die” and Other Barriers to Self-Care for People with Disabilities

OFF-KILTER with Rebecca Vallas

Play Episode Listen Later Apr 21, 2023 59:54


This week, Off-Kilter continues our ongoing series of conversations with social justice leaders digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work. As we've explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care—with disabled people as modern-day oracles, as activist Alice Wong often puts it.  For this week's episode, Rebecca sat down with Keith Jones, a longtime disability rights and justice activist, cofounder of Krip Hop Nation, president and CEO of Soul Touchin' Experiences, and a visionary thinker when it comes to approaching social justice work itself as a form of radical self-care for the collective. As Keith puts it: “In order to build a stronger community, there must be a heart and soul commitment to those who need assistance in order to begin caring for themselves and in turn caring for others.”  They had a far-ranging conversation about one of the most significant barriers to self-care for people with disabilities: asset limits and other backwards policies that make “work until you die” the default retirement plan for a huge swath of the U.S. disability community; what it looks like to enter social justice work from the starting point that “everything has a soul”; how Keith has woven together hip hop music into his disability activism through Krip Hop Nation; and more. For more: Learn more about Keith's work with Soul Touchin' Experiences, Krip Hop Nation, and follow him on twitter @dasoultoucha  Learn more about why “work until you die” is the retirement plan for so many disabled people in this op-ed by Rebecca Cokley  

Progressive Voices
Off Kilter TCF S411 E53 04 - 14 - 2023

Progressive Voices

Play Episode Listen Later Apr 17, 2023 59:59


This week, Off-Kilter continues our ongoing series of conversations with social justice leaders digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work. As we've explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care—with disabled people as modern-day oracles, as activist Alice Wong often puts it. Last week, Rebecca talked with Lisa McCorkell of the Patient Led Research Collaborative and Ryan Prior, author of The Long Haul, about what we can learn from the long COVID and ME/CFS communities when it comes to self-care practices like radical pacing and more. And this week, Off-Kilter is continuing to explore what we can learn from the chronic illness community when it comes to radical self-care. A concept Rebecca has found incredibly powerful in her own life as someone who lives with chronic illness is something called “Spoon Theory”—a framework that enables thinking about energy management in terms of metaphorical “spoons.” To dig into Spoon Theory and what we can learn from the so-called “spoonie” community when it comes to radical self-care, Rebecca sat down with Dawn Gibson, creator of #SpoonieChat and a board member for the National Pain Advocacy Center. She's a former Episcopalean minister-turned-health activist who's spent the last decade creating a powerful online community for “spoonies” and advocating to protect access to pain medications for people who live with chronic pain. They talked about the origins and evolution of Spoon Theory, the story behind #SpoonieChat as it celebrates its ten-year anniversary, what we can all learn from spoonies when it comes to radical self-care, and lots more.

OFF-KILTER with Rebecca Vallas
“Swimming with Dragons”: What We Can Learn From “Spoon Theory” About Self-Care

OFF-KILTER with Rebecca Vallas

Play Episode Listen Later Apr 14, 2023 59:54


This week, Off-Kilter continues our ongoing series of conversations with social justice leaders digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work. As we've explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care—with disabled people as modern-day oracles, as activist Alice Wong often puts it.  Last week, Rebecca talked with Lisa McCorkell of the Patient Led Research Collaborative and Ryan Prior, author of The Long Haul, about what we can learn from the long COVID and ME/CFS communities when it comes to self-care practices like radical pacing and more.  And this week, Off-Kilter is continuing to explore what we can learn from the chronic illness community when it comes to radical self-care. A concept Rebecca has found incredibly powerful in her own life as someone who lives with chronic illness is something called “Spoon Theory”—a framework that enables thinking about energy management in terms of metaphorical “spoons.” To dig into Spoon Theory and what we can learn from the so-called “spoonie” community when it comes to radical self-care, Rebecca sat down with Dawn Gibson, creator of #SpoonieChat and a board member for the National Pain Advocacy Center. She's a former Episcopalean minister-turned-health activist who's spent the last decade creating a powerful online community for “spoonies” and advocating to protect access to pain medications for people who live with chronic pain. They talked about the origins and evolution of Spoon Theory, the story behind #SpoonieChat as it celebrates its ten-year anniversary, what we can all learn from spoonies when it comes to radical self-care, and lots more. For more: Join #SpoonieChat at 8:00 pm ET most Wednesdays Learn more about and get involved with the National Pain Advocacy Center Connect with Dawn on Twitter @dawnmgibson and subscribe to the free #SpoonieChat newsletter Learn more about Spoon Theory in these remarks by its originator Christine Miserandino  Check out last week's episode of Off-Kilter for more on what we can learn from the chronic illness community when it comes to self-care Learn more about the American Association of Health and Disability's “nothing about us without us” All of Us research program

The 3D Podcast
Identity Unwrapped: Navigating Identity in a Diverse World

The 3D Podcast

Play Episode Listen Later Apr 13, 2023 46:51


Join us for a thought-provoking episode of “The 3D Podcast” as we engage in a stimulating conversation with Tash Koster-Thomas, Co-Founder of Breaking the Distance and an expert in Inclusion and Diversity. Tash shares her unconventional path from being a theater performer to becoming a consultant in Inclusion and Diversity. We delve into the meaning of identity in a diverse world and address both the positive and negative aspects of this reality. The episode concludes with practical steps that can be taken both in and out of the workplace to foster a more inclusive world.Connect with TashLinkedin : https://www.linkedin.com/in/tashthomasWebsite: https://www.breakingthedistance.com/Recommended Books :Disability Visibility: First-Person Stories from the Twenty-First Century by Alice Wong : https://a.co/d/7btJWl7Diversify by June Sarpong : https://a.co/d/6uhS6xFThe Inclusion Nudges Guidebook: https://a.co/d/6kRgHgp

Raw Material
Accessibility w/ Finnegan Shannon

Raw Material

Play Episode Listen Later Apr 11, 2023 36:12


In this episode Alice Wong introduces us to Finnegan Shannon, a multidisciplinary artist making work about disability culture and access. Episode Artwork by: Jen White-Johnson (www.jenwhitejohnson.com) Full episode transcript available below: https://docs.google.com/document/d/1b5mnmutrmxGUAci1nSxkQT1y6o--8dZ4HX6Eypzc6yY/edit?usp=sharing

OFF-KILTER with Rebecca Vallas
Learning from Long-Haulers about Rest and Radical Pacing

OFF-KILTER with Rebecca Vallas

Play Episode Listen Later Apr 7, 2023 59:54


This week, Off-Kilter returns to our ongoing series of conversations with social justice leaders digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work.  As we've explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care—with disabled people as modern-day oracles, as activist Alice Wong often puts it.  And to that end, for this week's episode, Rebecca sat down with Lisa McCorkell, cofounder of the Patient Led Research Collaborative, a new organization that advocates for folks with long COVID; and Ryan Prior, a journalist-in-residence with TCF's Disability Economic Justice Team, a board member of ME Action (which works to build awareness about a condition called ME/CFS), and author of The Long Haul.  Picking up on a conversation they had last July for the podcast about the patient advocacy revolution sparked by COVID long-haulers, they had a far-ranging conversation about what we can learn from the long COVID and ME/CFS communities when it comes to radical self-care, with a deep dive on the practice of “radical pacing”; the significance of self-care as political warfare to the chronic illness community; how patient advocacy itself is a form of self-care, particularly for folks with invisible chronic illnesses; the policy and cultural shifts needed to ensure basic practices like rest are universally available; and more. For more: Learn more about and get involved with the Patient Led Research Collaborative and ME Action Get your copy of The Long Haul Listen to the July 2022 episode of Off-Kilter on the long COVID patient advocacy revolution that comes up in the discussion Read a piece by Ryan on the World Health Organization declaring burnout an official medical diagnosis

Death, Sex & Money
Alice Wong On Medicaid, Rage, and “Good Care”

Death, Sex & Money

Play Episode Listen Later Mar 29, 2023 44:59


Growing up near Indianapolis in the '80s and '90s, Alice Wong was eager to leave. "I knew life was going to be so much better once I got into college," she said. Alice was raised in an immigrant household, and while there was a local Chinese-American community, she rarely saw people who looked like her in the mostly white community of disabled people she was also a part of. Back in 2020, Alice and Anna talked about how she learned to advocate for herself as a young adult, finding a community that felt like home, and managing finances on Medicaid. Since then, Alice has published a new memoir, Year of the Tiger: An Activist's Life, and then, last summer, faced a medical emergency that left her without the ability to speak or eat. She recorded an update for us using a text-to-speech app.   You can read more of Alice's recent essays in Teen Vogue, for CNN, and on the Disability Visibility Project's website.  

Raw Material
Art & Technology w/ Lindsey D. Felt and Vanessa Chang

Raw Material

Play Episode Listen Later Mar 28, 2023 47:46


In this episode Alice Wong introduces us to Lindsey D. Felt and Vanessa Chang, curators who collaborated on the multidisciplinary art exhibition "Recoding CripTech". Episode Artwork by: Jen White-Johnson (www.jenwhitejohnson.com) Full episode transcript available below: https://docs.google.com/document/d/1rW9gUlWx_jbxLV7aRTBimrIyoCbfCFY9NvoBiGfBxRI/edit?usp=sharing

OFF-KILTER with Rebecca Vallas
Everything You've Ever Wanted to Know About Boundaries But Were Afraid to Ask

OFF-KILTER with Rebecca Vallas

Play Episode Listen Later Mar 17, 2023 59:54


This week, Off-Kilter returns to our ongoing series of conversations with social justice leaders digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work. Given that the disability community harbors some of the greatest wisdom when it comes to radical self-care–with disabled people as “modern-day oracles,” as activist Alice Wong often puts it—Rebecca has been spending a good bit of this series in conversation with leaders across the disability rights and justice movement. For this week's episode, she sat down with longtime disability rights and justice activist Vilissa Thompson, founder of Ramp Your Voice!, a fellow with The Century Foundation's Disability Economic Justice Team, and someone who doesn't mess around when it comes to self-care. They take a deep dive into the subject of boundaries at work—a practice that, like so much within the realm of self-care, gets talked about a lot at the surface-level, but remains a perennial challenge for a lot of folks engaged in social justice work. Not so for Vilissa, who is so renowned for her mastery of boundaries—at work and throughout her life—that her friends and colleagues lovingly call her the “patron saint of boundaries.” For more: Follow Vilissa on Twitter @vilissathompson and learn more about Vilissa's work including Ramp Your Voice!  

Tamarindo
Latin Music with Raul & Pili

Tamarindo

Play Episode Listen Later Mar 15, 2023 43:34


On this episode we talk to the duo behind Raúl, Pili, y La Musica, the Latin music podcast where Raul and Pili tap into the human side of your favorite Latin artists.   DJ Raúl Campos is a house-hold name here in Los Angeles from Power 106 to KCRW. Emmy award winning TV host and producer, Pili Montilla has made a name for herself as the "go to" host in the bilingual entertainment world. We'll get to know a little bit about each of them and you'll hear how their passion for Latin music and artists is contagious.  More about our guests:  PILI MONTILLA  Emmy award winning TV host and producer, as well as content creator and tastemaker, Pili Montilla has made a name for herself as the "go to" host in the bilingual entertainment world. Always immersed in the world of music, Pili created, produced and hosted the Emmy winning music show "Té Para Tres con Pili Montilla”. DJ RAÚL CAMPOS  Los Angeles based radio host, producer and DJ Raúl Campos creates a mix of emerging artists and current favorites, from soulful grooves and fresh remixes to indie rock and Latin rhythms. From early days on Power 106FM's Power Tools to his current home at KCRW 89.9FM, he embraces a devotion to diversity.  Links mentioned on the episode: Rual, Pili, y La Musica: https://linktr.ee/piliraulandlamusica Article in the Nation: https://www.thenation.com/article/society/judith-heumann-work-retirement-plan/ Alice Wong's memoir: https://www.penguinrandomhouse.com/books/688504/year-of-the-tiger-by-alice-wong/ Spotify Playlist: https://open.spotify.com/playlist/3Sb3Ihxgpv07H82Vb89H87?si=20190d6cb6624d5a Chispa is the #1 dating app if you're looking to connect with other Latinx/Latine folk. Whether you're looking for love or just amiguis right now,  Download Chispa to look for that like minded community or that special someone.  Tamarindo podcast is the Latinx show where hosts discuss politics, pop culture, and how to balance it all con calma, hosted by Brenda Gonzalez and Ana Sheila Victorino. Join us as we delve into discussions on race, gender, politics, representation, and life! Check out all of our upcoming events:  https://www.tamarindopodcast.com/events Brenda and Ana Sheila are executive producers of Tamarindo podcast with production support by Mitzi Hernández and Augusto Martinez, of Sonoro Media. Jeff Ricards produced our theme song. If you want to support our work, please rate and review our show here. You can get in touch with us at www.tamarindopodcast.com Contribute to the show: https://www.paypal.com/paypalme/tamarindopodcast1 Follow Tamarindo on instagram @tamarindopodcast and on twitter at @tamarindocast  Follow Ana Sheila on instagram @la_anasheila and twitter @Shelli1228 Follow Brenda on twitter at @BrendaRicards

Raw Material
Disabled Artists w/ Jeff Thomas

Raw Material

Play Episode Listen Later Mar 14, 2023 33:05


In this episode Alice Wong introduces us to Jeff Thomas, an urban Iroquois photographer, researcher, public speaker, and curator. Episode Artwork by: Jen White-Johnson (www.jenwhitejohnson.com) Full episode transcript available below: https://docs.google.com/document/d/13hGXKXo1tJokHHKtpobdaHdJBG03eb0D-fL_-EAFm38/edit?usp=sharing

Crosscurrents
Photographer @WORK / Disability Rights / Black Migrants at the Border

Crosscurrents

Play Episode Listen Later Mar 1, 2023 26:50


Today, a local photographer takes his craft back to the basics. Then, friends of disability activist Alice Wong talk about her memoir. And, we meet a lawyer who works with Black migrants at the U.S.-Mexico border.

Raw Material
Disabled Dancers w/ India Harville

Raw Material

Play Episode Listen Later Feb 28, 2023 32:54


In this episode Alice Wong introduces us to India Harville, an African American queer disabled femme dancer, somatic bodyworker, activist, and educator. Episode Artwork by: Jen White-Johnson (www.jenwhitejohnson.com) Full episode transcript available below: https://docs.google.com/document/d/1TlOETTK70geysFM9MpBmYLmQ1ADhCF825M_6DZFC-Ws/edit?usp=share_link

Brains On! Science podcast for kids
Terrestrials: The Mastermind

Brains On! Science podcast for kids

Play Episode Listen Later Nov 11, 2022 24:48


Hi friends! We wanted to share this episode from the fabulous new podcast: Terrestrials. If you like it, you're in luck, because there are five more episodes waiting for your hungry ears. Enjoy! Radiolab for Kids Presents: Terrestrials. Terrestrials is a show for people of all ages that explores the strangeness that exists right here on Earth.    In this episode, Sy Montgomery, an author and naturalist, shares the story of a color-changing creature many people assumed to be brainless who outsmarts his human captors. If you want a SPOILER of what the creature is, read on: It's an octopus. We hear the story of one particularly devious octopus who lost a limb, was captured by humans, and then managed to make an escape from its aquarium tank—back into the ocean! The tale of “Inky” the octopus calls into question who we think of as intelligent (and kissable) in the animal kingdom.   Learn about the storytellers, listen to music, and dig deeper into the stories you hear on Terrestrials with activities you can do at home or in the classroom on our website, Terrestrialspodcast.org.    Find MORE original Terrestrials fun on Youtube.   Badger us on Social Media: @radiolab and #TerrestrialsPodcast    Credits:   Terrestrials is a production of WNYC Studios, created by Lulu Miller. This episode is produced by Ana González, Alan Goffinski and Lulu Miller. Original Music by Alan Goffinski. Help from Suzie Lechtenberg, Sarah Sandbach, Natalia Ramirez, and Sarita Bhatt. Fact-check by Diane Kelley. Sound design by Mira Burt-Wintonick with additional engineering by Joe Plourde. Our storyteller this week is Sy Montgomery. Transcription by Caleb Codding.   Our advisors are Theanne Griffith, Aliyah Elijah, Dominique Shabazz, John Green, Liza Steinberg-Demby, Tara Welty, and Alice Wong.   Terrestrials is supported in part by Science Sandbox, an initiative of the Simons Foundation.

Radiolab for Kids
Terrestrials: The Unimaginable

Radiolab for Kids

Play Episode Listen Later Oct 13, 2022 26:25


Over a billion lightyears ago, in the darkness of outer space, a collision of black holes sent out a fleet of invisible waves that were headed right toward planet Earth. The waves were so powerful they could ripple spacetime but most people on Earth didn't believe the waves were real. SPOILER ALERT: The waves are called gravitational waves and…they are real! Astrophysicist Dr. Wanda Díaz Merced tells the story of what happened when they hit Earth in 2015 and how scientists came to learn to use senses beyond eyesight to detect the waves. We also learn from Dr. Stavros Katsanevas about the building of a giant gravitational wave catcher called “The Interferometer.” This episode also explores how to persist in the face of doubt as we learn Wanda's tale of going blind and learning how to listen to the stars. Learn about the storytellers, listen to music, and dig deeper into the stories you hear on Terrestrials with activities you can do at home or in the classroom on our website, Terrestrialspodcast.org.  Watch the interferometer come to life, disco style, and find even MORE original Terrestrials fun on our Youtube. Badger us on Social Media: @radiolab and #TerrestrialsPodcast  More from Terrestrials  The Shovels: Dig Deeper For each episode of Terrestrials, we provide a selection of activity sheets, drawing prompts, musical lessons, and more. We call them “shovels” because we hope they will help you (and your friends, family, students, neighbors, etc) dig more deeply into the world! You can do them at home, in the classroom, outside, or in the privacy of your own mind. We hope you enjoy!If you want to share what you've made, ask an adult share it on social media using #TerrestrialsPodcast and make sure to tag @Radiolab Draw -  Use your ears to draw! In this very special drawing prompt, Wendy Mac and the DrawTogether team pull in an actual rockstar to play you various favorite sounds to draw. It's a feast for the mind, ears, and hands. Grab a pencil, pen, crayon, marker, anything, and check it out here! Play 🎶 - Learn how to play the chords to the song “UNIMAGINABLE” Do - Get crafty with a fun activity sheet!   This week's storyteller is Dr. Wanda Díaz Merced. Want to keep learning? Check out these resources to learn about the time-bending power that is the gravitational wave: Get to Wanda a little better; watch her TED talk!Take a tour of the world's first interferometer! (Free monthly tours in person in Richland, WA)Train yourself to use sound for signal detection in astronomy. Learn more about asteroseismology with the wonderful Hank Green!Spooked by the idea of the infinite universe? Listen to John Green's “Against Nihilism” (probably best for 13 and up)! Terrestrials is a production of WNYC Studios, created by Lulu Miller. This episode is produced by Ana González, Alan Goffinski and Lulu Miller. Original Music by Alan Goffinski. Help from Suzie Lechtenberg, Sarah Sandbach, Natalia Ramirez, and Sarita Bhatt. Fact-check by Natalie Meade. Sound design by Phoebe Wang with additional engineering by Joe Plourde. Our storytellers this week are Dr. Wanda Díaz Merced and Dr. Stavros Katsanevas. Transcription by Caleb Codding. Our advisors are Theanne Griffith, Aliyah Elijah, Dominique Shabazz, John Green, Liza Steinberg-Demby, Alice Wong, and Tara Welty. Terrestrials is supported in part by Science Sandbox, an initiative of the Simons Foundation. Have questions for us, badgers? Badger us away! Your parent/guardian should write to us along with you, so we know you have their permission, and for maybe even having your ideas mentioned on the show. Email terrestrials@wnyc.org

Radiolab
Terrestrials: The Mastermind

Radiolab

Play Episode Listen Later Sep 23, 2022 29:42


Lulu Miller, intrepid host and fearless mother of two, went off on her own and put together a little something for kids. All kids: hers, yours, and the one still living inside us all.  Radiolab for Kids Presents: Terrestrials And it's spellbinding. So much so, that we wanted to put this audio goodness in front of as many ears as possible.  Which is why we're running the first episode of that series here for you today.  It's called The Mastermind. In it, Sy Montgomery, an author and naturalist, shares the story of a color-changing creature many people assumed to be brainless who outsmarts his human captors. If you want a SPOILER of what the creature is, read on: It's an octopus. We hear the story of one particularly devious octopus who lost a limb, was captured by humans, and then managed to make an escape from its aquarium tank—back into the ocean! The tale of “Inky” the octopus calls into question who we think of as intelligent (and kissable) in the animal kingdom. Learn about the storytellers, listen to music, and dig deeper into the stories you hear on Terrestrials with activities you can do at home or in the classroom on our website, Terrestrialspodcast.org  Find MORE original Terrestrials fun on Youtube.And badger us on Social Media: @radiolab and #TerrestrialsPodcast And if your little ones or you want to hear more of Team Terrestrials amazing work on this series, please search for Radiolab for Kids Presents: The Mastermind, wherever you get podcasts.  Terrestrials is a production of WNYC Studios, created by Lulu Miller. This episode is produced by Ana González, Alan Goffinski and Lulu Miller. Original Music by Alan Goffinski. Help from Suzie Lechtenberg, Sarah Sandbach, Natalia Ramirez, and Sarita Bhatt. Fact-checking by Diane Kelley. Sound design by Mira Burt-Wintonick with additional engineering by Joe Plourde. Our storyteller this week is Sy Montgomery. Transcription by Caleb Codding. Our advisors are Theanne Griffith, Aliyah Elijah, Dominique Shabazz, John Green, Liza Steinberg-Demby, Tara Welty, and Alice Wong. Our newsletter comes out every Wednesday. It includes short essays, recommendations, and details about other ways to interact with the show. Sign up (https://radiolab.org/newsletter)!Radiolab is supported by listeners like you. Support Radiolab by becoming a member of The Lab (https://members.radiolab.org/) today.