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