DisTopia

DisTopia looks at disability, art, and culture from the inside out. A production of DisArt, this podcast is invested in raising the voice, visibility, and value of Disabled people through interviews and episodes with past and present trend makers within the world of Disability culture.

4 Wheels, Ep. 4: Growing Up Disabled 04/18/2024

4 Wheels, Ep. 3: Advocacy 03/21/2024

DisKumbaya Ep. 2 | Adaptive Adventures 02/20/2024

4 Wheels, Ep. 2: Access Fatigue 02/15/2024

4 Wheels, Ep. 1: Adaptability 01/18/2024

DisKumbaya Episode 1: Intro 06/26/2023

In A Flash Episode 5: Part 2 - Dani's Twins 06/26/2023

DisKumbaya Episode 1: Intro (Teaser) 06/26/2023

In A Flash Episode 5: Part 2 - Dani's Twin (Teaser) 06/26/2023

In A Flash Episode 4 PT.1: Dani's Twins 03/15/2023

In A Flash Episode 4 PT.1: Dani's Twins Description: Disabled moms aren’t counted in most maternity statistics, and we aren’t found on the pages of obstetrics textbooks. Enter Dani’s Twins: a documentary about disability cultural advocate and quadriplegic mom Dani Izzie offering a rare and intimate look at the creativity, adaptation, and joy woven into disabled pregnancy and parenthood. This episode is the first of a two part series. In part one, we’ll talk with Dani about the role of creativity and community in the everyday life of a disabled mom. In part two of this series, we’ll zoom out to consider the role of creativity in transforming policy for disabled parents as we talk to the producer of Dani’s Twins, aspiring dad, and disability policy expert: Andy Arias. Guest: Dani Izzie Host: Jessica Stokes Audio Producer: Lawrence Carter-Long Transcript by: Lawrence Carter-Long Music: And Just Like That By Bryan Teoh Transcript: Jessica Stokes: Hello, and welcome to In A Flash: A DisTopia conversation. In A Flash is a short, accessible, sometimes irreverent podcast introducing you to topics important to disabled people and disability communities. I'm your host, Jessica Stokes. This podcast is made possible by the Creativity in the Time of COVID-19 project. Today, we begin a two-part series on the role of creativity in disabled parenthood. First, we'll zoom in on the experience of parenting through a pandemic, the everyday brilliance of reimagining motherhood outside of advertiser’s depictions, and the literal zoom usage that made community possible. We'll hear about a table transformed into an inexpensive, assistive technology for diaper changes. With little more than a reimagining of what that table could do. We'll learn about crafting, community, and the compounding isolation of a pandemic that disproportionately impacted disabled people, and in part two, will zoom out to the role of creativity in transforming the policies that impact disabled parents. And disabled parents to be. Disabled moms aren't counted in most maternity statistics, and we aren't found on the pages of obstetrics textbooks. Enter Dani's Twins, a documentary about disability, cultural advocate, and quadriplegic mom Dani Isaiah, offering a rare and intimate look at the creativity, adaptation, and joy woven into disabled pregnancy and parenthood. Dani Izzie has so many rules, from mom to wife to creative director to advocate. Her chair and lifestyle are an extension of who she is. A badass, smart, creative person, Dani is sharing her personal journey to help others with disabilities who are considering or experiencing parenthood. I'm so grateful for Dani Twins. It made me laugh. It made me see new possibilities for myself. In 2018, when I asked a team of specialists in my neuromuscular disease what might happen to my body during pregnancy, I was met with blank stares. One kind neurologist put in the work and got back to me with his deep dive into the almost nonexistent statistics. A few days later, he asked me to come back and teach his medical students about disability and motherhood so the blank stares wouldn't continue in this next generation of doctors. I wish I'd had this documentary to show them instead, I wasn't ready to become an expert yet. So, Dani, as a disabled mom and disability community influencer, what creative ways have you found a parent? What's one adaptation or solution to a parenting problem that you've developed I wouldn't find in a parenting book? Dani Izzie: Products are marketed specifically to non-disabled parents, right? And there's just a lot of stuff out there that we're told we have to buy. From my experiences, when it comes down to it, you don't really need very much of it at all. There are certain things that when you have a profound disability, such as mine, you might think you need really complex equipment that's built for you and built for people with disabilities in mind. And some of that is out there. Not very much of it, but when it is out there. The price is astronomical. I found that just being really creative and finding simple solutions was my best bet. I ditched crib. I bought a fancy crib, an adaptive one, and then I didn't use it. I just ditched the crib and I said, I'm going to co-sleep with the girl. Because co sleeping is accessible for me. It doesn't require me to get in and out of bed, which is very taxing. That was one solution, and then another one was none of the diaper tables are wheelchair accessible. You can't roll under them. Okay, so how about the dining room table? Just put a towel on the table, change the diaper there. So, a lot of times the answer is right there. You just don't see it because there's so much noise. Jessica: So many stories of motherhood are about immediate family. Dani's Twins shows you Dani surrounded by disability community. You say you are more ready for pregnancy and motherhood because of, not in spite of your disability. Could you speak more to the role of disability community in that? Dani: Yeah, that statement hinges on the fact I allowed myself to be part of the disability community, and I found support and strength in that community where I started to see my disability not just as a medical condition or a hindrance day to day, but actually something to be empowered about. A lot of the challenges that I weather on a day to day basis prepared me for the emotional mental whole of motherhood. So I was already sad already, in a sense, having that community particularly equipped me with the strength that I needed through that phase, especially the early motherhood phase. Jessica: Do you have a story of a conversation, somebody that you talked to during pregnancy or early childhood that was transformative for you? Dani: I acquired my disability almost 15 years ago, so I'd say when I was first injured, one of the first questions that popped into my head is, am I going to be able to be a mom with this disability? And there was a mentor in the rehab where I was Shannon, who actually happens to be in the film. And she was the first woman that I'd ever befriended and gotten to know who was a quadriplegic and also a mom. And I was just amazed because I'd never seen it out there. And I just made the assumption that it would be too hard because what I was facing was unfamiliar territory. And so, yeah, I think Shannon was the first person that gave me hope. And then from there, I kept meeting more and more women who have kids, and I realized, okay, well, it's a regular thing. It's not even a big deal, actually. Jessica: So, the pandemic dramatically impacted the disability community and your pregnancy. I'm going through the film, and it's already about the kind of challenges that a disabled mom would face in a medical industrial complex that isn't quite ready to respond to disability and all of its complexity. Then the pandemic hits. I wonder if you could share a little bit more about that experience. Dani: Oh, my gosh. The pandemic really magnified the inequities and brought forth more. It was a tremendous challenge. Gave birth April 2020. So that was kind of right at the height of everybody was like, what the heck is going on? Nobody even knew. We were in a really high-risk situation for our entire family because, first of all, I have my disability, which affects my lung function. I have 30% lung function, and then I'm pregnant. So that kind of throws down your immune system. And then when I finally did have the baby, they were premature and their lungs weren't fully developed. It was terrifying. Jessica: And then you're entering early parenthood with preemies who are in the hospital and going back and forth to that space in this time that is isolating already for most moms that I talk to, like, isolation, loneliness, early parenthood, those are the words ... And then that word isolation had taken on a new meaning at the moment that you're going through it. So what was it like trying to create a village for yourself, connect to others, get the support you need, avoid as much of that isolation as possible in that time of early parenthood? Dani: It was so hard because while I was pregnant, I was really trying to have a game plan: How am I going to handle this? How am I going to get the support I need? I'm going to get family members to help on these days, I'm going to get caregivers to help me, and then separately, I'll also have baby sitters to help facilitate my ability to be a mom. Then I'll get lactation consulting to help me figure out how to nurse twins as a quadriplegic with dexterity issues. And so, I had all these plans, and all those plans went out the window. So, our family didn't come in. It was pretty much just Rudy, my husband and I, and baby boot camp, and I leaned a lot on him, but as you know, as a mother, those first few months, the baby depends on the mom. And so, it was very tough to figure out, and it was hard on us as a couple. I started just really using the internet and social media to start reaching out to other women to feel less alone. And we started using platforms like Zoom and Google Chat to talk to each other... FaceTime, just started doing that regularly. Didn't even feel like labor. It felt like survival. I had to connect with these people to figure out how to cope with this extraordinary situation. Jessica: We end each episode with takeaways. This isn't just an infodump, but a way to change your everyday. Disabled people often face discrimination, assumptions of what we can't do. People who think we can't have jobs, be parents, even get into buildings... Those assumptions are grounded in things like pity and disgust or perhaps people who just never really imagined us. Every day, disabled people challenge, hack, and reimagine our environments as we navigate inaccessible spaces, deep ableism, and places where no one thought we'd be. So, my first recommendation is that you hire disabled people and learn from our expertise. We craft paths where none existed. We shift long standing assumptions as we roll, and sit, and limp through the world, then watch Dani's Twins and recommend it to a health care provider in your life, so my life might be a little easier going forward. Finally, listen to Part 2 of this episode as we consider the role of creativity in transforming policy for disabled parents. We'll talk to the producer of Dani's Twins, aspiring parent and disability policy expert Andy Arias. Now go forth, you've got work to do… Music used for this episode is "And Just Like That" by Bryan Teoh. Find more at BryanTeoh.com /episode/index/show/distopia/id/26241513

In A Flash Episode 4 Pt.1: Dani's Twins (Teaser) 03/07/2023

In A Flash Episode 3-Pleasure & Justice: A conversation with Moira Williams 01/01/2023

In A Flash Episode 3-Pleasure & Justice: A conversation with Moira Williams Guest: Moira Williams Host: Jessica Stokes Audio Producer: Taylor Kaigler Transcript by: Taylor Kaigler Music: Hammond by Waiting for Sound Life is a cabaret…or at least moira williams’ environmental justice activism is a cabaret. When people think about water justice, they imagine access to clean drinking water and an end to extractive practices; Guest moira williams proposes all that and a day at the beach. Introduction [energetic synth rock music with heavy percussion] Jessica Stokes: Welcome to In a Flash a dystopia conversation in a Flash is a short, accessible, sometimes irreverent podcast, introducing you to topics important to disabled people and disability communities. I'm your host, Jessica Stokes. I have big red hair. Too much of it. And a green walking stick or purple wheelchair. Today I'm having a conversation with Moira Williams on Pleasure and activism. Jessica Stokes: Normally in a Flash has three parts. We introduce you to a topic. We wheel you through a conversation on that topic. And then we end with takeaways, practical steps for you to change your everyday. But today we're throwing you in in the deep end. Don't worry, there's an accessible barge waiting for you and an explanation of what water justice looks like can feel like can taste like can be. Jessica Stokes: So join us for disabled people in community on an accessible barge. And today we're joined by Moira Williams. They're a disabled Indigenous artist, cross disability, cultural activist and access doula co-creating and weaving disability justice together with Crip, celebratory resistance and environmental justice. Their work is so vibrant and compelling. I spend a lot of time watching plants grow on your body. Jessica Stokes: I'm thinking about that Moira and I shared it with my students recently and I'm just very excited to to be in conversation with you and see what will grow from that. Moira Williams: Hey, everybody. Thank you, Jessica. I'm so honored and excited to be here to sharing a real space with you. Super exciting. My name is Moira again, Moira Williams. I'm an indigenous disabled artist and cultural activist, and I have a constellation of disabilities, primarily a traumatic brain injury and I was born with other disabilities as well. So hence the constellation. Moira Williams: That's also the way I think of things as multiverse and constellations. My work is is primarily disability justice, water justice or environmental justice and also pleasure activism. And I like to think of like why not irresistible pleasure activism. Jessica Stokes: That's lovely, yea, I'm hearing in the introduction as you move through this conversation around water justice and I think about what immediately comes to mind for me in a water justice conversation is to have access to safe drinking water and to know no one is being poisoned by that water. But then your list keeps going to pleasure activism and even to irresistible pleasure activism. Jessica Stokes: You're calling me into this world. And so I just wanted to talk a little bit about how you think our listeners might perceive environmental justice. And then if you could move us into or wheel us through how you frame environmental justice in your own work. Moira Williams: I so oftentimes people think environmental justice is exactly that about equitable drinking water, access to equitable drinking water, clean drinking water and and climate change is, you know, primary thought too with with environmental justice. And for me, those things are all very important. But as an indigenous, disabled person, I also think of equity for all beings in the world, from macro to micro. Moira Williams: You know, just everything about respect, about, you know, absolutely equity, but respect respect for cultures, ancient knowledges, respect for all things being and the interconnectedness and unity of that environmental like, environmental unity, essentially sacredness of the earth. And for me, that's about the body mind, spirit, connection, that we're a wholeness and that we come from Earth. Moira Williams: I'm made from the Earth. Everybody's made from the Earth. Everything we see is made from the Earth and the respects of our culture and language and ancient knowledge is around that. But also, as a disabled person, I think of environmental justice as health justice and care justice and the sense of like in New York, one of the projects I was working on with works on water and culture push around the New York City comprehensive waterfront plan that comes out every ten years. Moira Williams: And it's a revisioning plan. Not all of it happens. It's, you know, just a base of possibilities in the built-in environment. But one of the things that was really disturbing, just writing the ferries, they're not accessible and they're supported by private and public funding. I mean, how I mean, what a beautiful thing to have an accessible ferry, not only for transportation to get to places like other islands that are part of New York City for for pleasure like everybody else does. Moira Williams: So that's also part of what I see as environmental justice is everybody's ability, supported ability to get to places that are in the environment for pleasure and joy. Jessica Stokes: Yeah, I'm thinking about this question of how do we bring people along and the kind of interdependence spaces that you're trying to make happen and how that comes back to to notions of time. So I wondered if you could talk a little bit more either in your performance work or in your activism about what having more time can mean for making space for cross disability activism as well as space for this kind of interdependent imagining that you've been doing and making. Jessica Stokes: What the sort of role of time is in all of that. Moira Williams: Time is a big thing. I like to because I primarily work in the art world. Time is not the the thing that art spaces afford. Typically, even in the virtual world, you know, which is is sad to me because for me time, it takes time to build relationships for one. And a lot of the work that I do is, is co-thinking co-creative. Moira Williams: It's not like I say we and with, you know, it's not just me. Like I have an idea that might be changed by working with other people and that takes time that that's the thing I can I mean, this project was almost two more than a year long, you know, and so so that's for me, that's really important. Moira Williams: The idea of longer time, whether people want to call it Crip time or just which I love crypt time. And I think crypt time means so much to so many different people. But if like slowing down is, is what I try to do with my work because then it also allows me to give time to other people who I would love to invite into the work. Moira Williams: So they have time to think or time to process things that we're talking about, you know, or react or embody or whatever it is that they need. So time is really important. Jessica Stokes: Yeah. So, so you had this the sort of example of the totally inaccessible giant ladder sort of space, but you had access to it. People invited you to come out and then you've got this image of accessibility. But accessibility for what? I would say for whom, but it seems like for what we the kind of way in which barges show what was imagined, moving from one space to another instead of imagining disabled people in that space. Jessica Stokes: And yet you made it happen to get disabled people to the waterfront to celebrate the access that you made possible on this barge. And I wonder if you could just take us there, like tell me a little bit about what it was like the night of the cabaret when you got this group of people together to celebrate what y'all have done on the waterfront? Moira Williams: Well, it was it was a it was a great night it was July. I think it was July 12th ninth, not 19 July 12, 2021. And we it was the first it was the first day or the first week that people could go out in public during COVID. So, of course, people were super excited, you know, and of course, people were afraid, too. Moira Williams: And we had a a serious mask policy. And the other reason the barge was a a place that I thought would be perfect is because a barge has is pretty much an open space. So it has these big wide doorways that are about ten foot wide by ten foot high and four of those. And so the air goes through and people could go off onto the dock, which was a nice, sturdy platform. Moira Williams: It was. It was a beautiful summer night. Who Girl a.k.a Kevin Gaskins was deejaying our gracious deejay, wonderful human being deejay. We'd have several artists for our cabaret because it was a overflows and disruptions trip cabaret on an accessible boat. We had, I believe, five, six performers. And Kevin, of course, and then Kevin Quiles Bonilla who I commissioned with his sister Kiesha, to do or have a conversation about access to the water and then that was a video that we showed. Moira Williams: We had lots of dancing we had between dancing and dance sets and just just basic hanging around because that's what we craved. I think everybody was craving that. There was specific food and drinks, nonalcoholic drinks and food that was really easy to carry around, like snacky kind of things that were like no allergens. And we had a couple of stim areas and cozy areas were set up with big pillows and there were soft lighting there. Moira Williams: The boat, the barge itself has an awesome, like huge game that you can play. That's like a fun carnival contraption. We also had areas set up where you could get your photograph taken with with a glittery background part of the New York skyline. And you could hold these really great banners that were like affirmations about our like our bodies connecting to bodies of water. Moira Williams: And those were commissioned I commissioned those from a fabric artist, Ariel Romanski, and then then pipe access to the performance, which was beautiful. Simone Johnson and Humanuh Oh, Humanah. I'm so sorry. I can't remember your last name. A poet, disabled poet, trans poet. And then, uh, Von did ended us with this beautiful, like, ritualistic performance that was sung and spoken poetry and just really beautiful. Moira Williams: And those. The other cool thing about this whole event was, well, several cool things, I think, that were I feel really proud of. One was that it was a hybrid event, so it meant we were in-person and online so people could attend both. And we broke that up with also having some of our performers, our guests also online. Moira Williams: So that was really great and also gave them opportunities to perform too. So always thinking about how do we bring people along, how does that work? Because not everybody wanted to go out during that time. And then the other thing that was really great was that the people at Works On Water and Culture Push were more part of part of this entire advocacy for programing and work that I was doing. Moira Williams: I was commissioned to do that and work with them and supported by them, which was amazing. And they not everybody who works with them is disabled. And there was a lot of this really great, not only across disability kind of work going on, but also just across disability advocacy, allies happening. So it was really it was really great all around in many ways. Wrap-up and our takeaway Jessica Stokes: Thank you so much for bringing us back to the beach and then also making us think about what is it that we could do if, in fact disabled people got involved in citizen science and the kinds of thinking, questioning thing that could happen in those spaces? I so appreciated doing this interview with you today. The second time I feel I learned even more and been taken to places I didn't know that I would veer off into as we thought about time together and what it means and the kind of work that you do. Jessica Stokes: I so appreciate your Moira. Thank you so much. So get out of here. You've got work to do to create a more accessible world. Go forth. You've got work to do. [energetic synth rock music with heavy percussion] /episode/index/show/distopia/id/25377828

In A Flash Episode 3- Pleasure and Justice: A conversation with Moira Williams 12/26/2022