Alison Stewart: This is All Of It. I'm Alison Stewart, live from the WNYC studios in Soho. Thank you for spending part of your day with us. I'm really grateful that you are here. On today's show, we'll speak with writer Sarah Ruhl about her new book, Lessons from My Teachers. We'll hear excerpts from our recent Get Lit Book Club event with Laila Lalami, the author of the Dream Hotel, plus a special live performance from New York-based band Imal Gnawa. Next week we have great conversations planned. The playwright, director, and one of the stars of the Tony-nominated play, John Proctor is the Villain will be coming in studio, and we'll also speak with the authors Ocean Vuong and Carl Hiaasen about their new novels. That's the plan. Let's get this hour started with a discussion about parenting. Sunday is Mother's Day, and for those of you celebrating the mom in your life, that could be your own ma or a friend or a sister, or someone you look up to and appreciate their maternal nature. Our next guest is the mother of two, and sometimes her motherhood is questioned.

Jessica Slice is a disabled person. She wrote a book called Unfit Parent: A Disabled Mother Challenges an Inaccessible World. In it, she uses interviews, studies, and her own experiences to examine why we treat a disabled mother as "lesser than." The result can sometimes be taking a picture and posting it with a caption, or, more seriously, a child being removed from a home. Her thesis is disabled parents live within "a disability culture that has allowed us to grow and develop in an alternative context to the rest of society. Flexibility and compassion are preventative survival techniques that disabled people pass to each other. Jessica Slice joins us now. Hi, Jessica.

Jessica Slice: Hi. Thank you so much for having me.

Alison Stewart: Listeners, we would like to get you in on this conversation. Were you raised by a disabled parent? What do you want people to know about your life? Are you a disabled parent? How do you cope with the expectation of others? What was the expectation you had for yourself? What's a change from the "norm" that you worked out just fine in your family? Call us or text us now at 212-433-9692. 212-433-WNYC. You can call in, you can join Jessica on the air, or you can text to us at that number. Jessica, let's get a little bit of your backstory. In your late 20s, you became disabled in around 2011. You were on a hiking trip. What was life like for you up until that point?

Jessica Slice: I was just a very active person. I worked long days. I went for runs in the morning, out with friends most evenings. I think I had an above-average level of activity. I was also a perfectionist and a real striver. I was hard on myself and just always wanted my life to be a little bit better.

Alison Stewart: What changed in your life the most?

Jessica Slice: Oh, my gosh. Everything changed. The activities of my daily life changed dramatically. I now spend almost all of my time in bed or reclined on a sofa, or in a power wheelchair. I can't exercise anymore. I no longer travel all over the world. Flying is almost impossible for me. Also, I changed in a deeper way. Before disability, I thought that if I worked hard enough that I could have a good enough life and finally be happy or finally have a perfect enough life.

Having all of those things I was working for taken from me really made me think about, okay, who am I? What do I value? When I found disability culture, I used that to build a life that feels more true for me. It's much smaller and it's definitely less beautiful to look at, but it feels honest and it feels a lot more sustainable than the life I had before.

Alison Stewart: Do you remember, was there an epiphany that led you to think differently about your body after you were diagnosed? If you wouldn't mind sharing with our listeners what you were diagnosed with?

Jessica Slice: Of course, I was diagnosed with POTS and EDS. It took about two years to get diagnosis. I think as a 21-year-old or 28-year-old woman, I was told by many doctors that my symptoms were in my head or just that I was worried too much about my own body. After a couple of years, I got that POTS diagnosis. Then a year later, when my little sister developed the same symptoms, we went to a geneticist and were diagnosed with Ehlers-Danlos Syndrome, which is a genetic condition that causes POTS.

Then as far as the realization, I think there were a couple. One, in the years that I spent trying to come to terms with my illness, I was having a really hard time with the structure of my days, with what they actually looked like, that I had to spend almost all of my time taking care of my body. I remember one day just thinking, "Well, this is a day of my life. This is one of the days that I am alive." I started writing down in my journal, this too is a day of my life. That really shifted something for me. It's not that the days I need to make the most of them. It's just that they exist and they count.

It's not like my life would finally begin once my days became easier. There was no other me that was waiting on the other side. Then the other shift was a few years later when I started reading disability theory and reading the works of disabled authors. I encountered this transition where I no longer felt like I had had this body that worked, and now it no longer worked, and I had a deficient, sick body. Instead, I started to feel like I had transitioned from this community of people, the non disabled community.

Now I was part of disability culture and feeling like I was in the disability community, just to me felt like coming home because they were these incredible, innovative, creative, brilliant, world-changing people. I was like, "Oh, I get to be one of you." Well, then this isn't a pure loss. There is gain here.

Alison Stewart: You've written several books. You've written for The Times, The Washington Post. What prompted you to write this book, Unfit Parent?

Jessica Slice: It's the topic that takes up most of my time personally. I have two young kids, and the reality of my parenting is what I spend my time thinking about. It's also the topic that when I write about it, I hear from the most people. I think a lot of disabled parents feel unseen and feel invisible, and that having a space where their stories are told is just deeply needed.

Alison Stewart: What questions did you want to raise in covering disabled parenting?

Jessica Slice: I really wanted people to think about the fact that the line between disabled and not is not permanent. It's also pretty fuzzy that all people have bodies that have needs, and parenting really causes you to have more needs. I wanted people to consider disabled people not as this wholly different and inadequate group of people, but that we're all on this continuum and different continuums of needs, and that accepting our own needs and accepting the needs of others provides real solutions to all of us.

Alison Stewart: My guest is Jessica Slice. She is the author of Unfit Parent: A Disabled Mother Challenges an Inaccessible World. Listeners, were you raised by a disabled parent?

What do you want people to know about your life? Are you a disabled parent? How do you cope with the expectations of others? What was the expectations you had for yourself? What has it changed from the norm that you worked out just fine in your life? Give us a call or text us at 212-433-9692. 212-433-WNYC. Why did you title the book Unfit Parent?

Jessica Slice: There's a couple of reasons. One, disabled parents lose custody of their children far more often than non disabled people. When those reports are written, they're called unfit parents. I wanted to reference that. Two, I have this suspicion that all parents secretly feel unfit. I wanted to touch on that, that I think we all have this insecurity about, "Am I good enough? Am I doing this right?"

Alison Stewart: The subtitle says, "A disabled mother challenges an inaccessible world." What does that refer to?

Jessica Slice: I think the world is inaccessible for disabled people, which is the lack of ramps, the lack of accessible spaces, the lack of accessible reproductive care. I also think it's inaccessible for parents. I think there's a lack of adequate parental leave and a lack of affordable childcare. I think I wanted to show that there's this real link between a lack of accessibility for parents and a lack of accessibility for disabled people.

Alison Stewart: In the book, you write that disabled people are good at thinking about, What do I need? What can my body do? What is the world like? What are the options? How do those questions come up in parenthood?

Jessica Slice: [laughs] Those come up just all the time. I think what traps so many parents is that you think the answer has to be the same answer of everyone else, or the answer to those questions has to match what companies who are trying to sell you things say they should be. I think if we can look at our individual lives and accept that each of us has a different capacity and a different need, then the answers actually look quite different and actually involve a lot more community and a lot more asking for help than a consumeristic-driven parenting would make you think.

Alison Stewart: You make the statement that disabled parents maybe are better at dealing with life changes. What do you mean?

Jessica Slice: For me, there was this major shift when I became disabled. I had been able to pretend for so long that my body was invincible and that life could go the way I wanted it to. Disability really pried that from me. When I became a parent and I had to confront the fragility of parenthood, the fragility of children's lives, the unpredictability of the days, the complete change in daily activities, that, for me, mimicked the transition to disability. I felt like I had practice at that. I think for some people who have had really predictable bodies and lives, that the transition to parenthood can feel especially jarring, particularly if you're recovering from giving birth, which can be its own introduction to experiencing disability.

I think there are disabled skills that just translate directly to the transition to parenthood.

Alison Stewart: Let's talk to Kristen, who is calling us from Redding, Connecticut. Hi, Kristen. Thank you so much for making time to call All Of It today. You're on the air.

Kristen: Hi. Thank you for taking my call. I'm calling because I have a mother who is disabled. She's been disabled for over 20 years. It happened when I was 16 years old. She had a very catastrophic stroke, which left her left side of her body almost unusable. It has been a challenge throughout both of our lives dealing with this disability. As she has aged, it's just gotten more and more difficult. She's been an amazing mom to me. She's so strong. I've been in awe of her strength throughout all of the challenges that she's had to deal with. She had her stroke a day after she turned 40, and she's now 65. It's been challenging for me as well, trying to find accommodations for her as her body breaks down further. It's just amazing how things are so inaccessible even after so many years after laws have changed. Yes, it's just been challenging. I admire how she's been so strong through all of it.

Alison Stewart: Kristen, thank you so much for calling and your candor. We do appreciate it. Did you want to respond, Jessica?

Jessica Slice: Sounds like they have just a really special relationship. It's interesting she mentioned the struggles, but it sounds like which is a thing I hear a lot, that often one of the most painful things is a lack of accessibility and a lack of resources. That a changing body can, of course, be really difficult and hard and involve a lot of grief. There's this real magnification of that grief when the world is unwelcoming and you can't access what you need.

Alison Stewart: In the book, you note that 82% of doctors, when they were interviewed, believe that people with disabilities have a worse quality of life. That was a shocking statistic to read because also, it's not really necessarily a fact. It's people's opinions. What are the outcomes of beliefs like that? Because it isn't a fact. It's an opinion.

Jessica Slice: It is an opinion, and it's actually not based on fact. When disabled people are interviewed, they have a much, much higher quality of life than non disabled people expect. It's actually so dramatic that there's an entire branch of philosophy that studies the disabled paradox, which is the unexpected high quality of life of disabled people. Within medicine, there can be a pretty unnuanced way of looking at it. What the impact is, is disabled people receive less cancer screening than non disabled people, which is obviously very dangerous.

When interviewed, doctors say they don't know what the value of treating a disabled person for cancer would be, which makes all sorts of assumptions about what kind of life is worth having. What I think all of this gets to is that in my personal experience, we are very, very bad at predicting what will make us have a good life. That one, so little is in our control that we're not very good at orchestrating our life. Two, even if we were, we wouldn't be very good at predicting what we would want our life to look like. We don't really know until we're in it.

Preventing people from accessing the care that they need, be it fertility care or cancer screening, or accessible gynecological appointments, all of that is based on just a completely inaccurate foundation.

Alison Stewart: Let's talk to Jesse, who is calling from New York. Hi, Jessie, thank you so much for making time to call All Of It this afternoon. You're on the air.

Jessie: Hi there.

Alison Stewart: Hi.

Jessie: Thank you so much for having me on. I really appreciate it. I just wanted to thank Jessica for writing this book. I have a six-year-old son. I became disabled with Long COVID three years ago. It certainly changed what I was able to do as a parent and changed my relationship with my son, and led to a lot of the questions that I think Jessica brings up in her book. I'm just grateful to have somebody who is shedding light on-- Giving visibility to a group of people who are often made invisible. Certainly, in the case of Long COVID, there's so much denialism and people not wanting to recognize that it's an actual thing that we can often feel invisible.

Alison Stewart: Jessica, thank you so much for calling in. One of the ways you give an example of how people can care for one another is by offering mutual aid. What's an example of that?

Jessica Slice: Oh, I love that. I've noticed when doing interviews for this book, when I have an interview with another disabled person, we're often doing this mutual accommodation, mutual aid. A local NPR reporter came to interview me at my house. Speaking of Jessie and Long COVID, the caller, this reporter is very COVID-conscious and said, "Would you like me to test first and mask?" I said, "Oh, actually, that'd be great. Would you like me to mask and test first?" She said, "That'd be great." She said, "I'm actually disabled," and so then I asked what furniture would work for her body, and she let me know.

Then she asked me where I would be most comfortable. We just had this back and forth, and there's something so lovely about a mutual acceptance of need and a mutual acceptance acknowledgement that it's not embarrassing to have specific requirements. It's actually just a way of caring for each other.

Alison Stewart: Sometimes people respond in a way that they think is right. You note in the book, this woman noted a child on the lap of a woman who was using a wheelchair. She was very, very, very concerned. You point out why that might not be the right response. How would you ask someone-- What would you ask then people to consider before getting involved, before making an assumption?

Jessica Slice: I think these safety concerns, which have come up for me too, once I was told I couldn't have my baby on my lap at an airport in my wheelchair. I think a lot of that comes from this desire to be able to control our lives and keep our kids safe. We act like we know what will keep us safe and what won't. When a disabled person and the way we parent is unfamiliar, it's easy to say, "That is unfamiliar, so it must be safe, and what I'm doing is fine." It's like a way of comforting oneself.

I just think before questioning the safety of someone else's parenting, it's probably a good idea to wonder, "Where is this coming from? What is the fear that I'm trying to alleviate? My own fear that I'm trying to alleviate by pretending I know something about another person's life." I think it's often more of a personal struggle.

Alison Stewart: My guest is Jessica Slice. The name of the book is Unfit Parent: A Disabled Mother Challenges an Inaccessible World. You note in the book that 22 states consider disability as a possible reason to remove kids from a home. What laws would you like to see changed?

Jessica Slice: One, in a number of states, the actual court system that a family goes through when a child remove is not accessible. I think that should be just absolutely changed. Parents should have access to the accommodations they need when going through the system. Be it when they're given instructions for what they need to do to prove that they're capable of taking care of kids. I talked to an attorney in New Jersey who was representing an autistic couple. He said they kept being told that they weren't listening to what they needed to do, but it was actually that they were not being given instructions in a way that they could follow.

I said, "Is it like they are being instructed in a language they don't speak?" He said, "Yes, exactly. Exactly." We need a translator. In some places, it's as simple as that, that a parent is doing everything they can, but they aren't sure or they aren't able to access the facilities or access the instructions or, yes-- I think the accommodations is one. Then two, I think we need an overarching shift in how we think about parenting, that there's this sense that if you can't take care of a kid on your own and you need help, that you're somehow inadequate.

In fact, everyone needs help when caring for kids. It's just that people with higher incomes are able to pay for that additional help. If your need for help is laid bare by poverty, then there's judgment cast on it. I think we just need to accept that every person needs help, and needing assistance is not an indication that you're a bad parent.

Alison Stewart: This adds to a text that just came in. It says, "My sister is a disabled single mother who is raising two brilliant and impressive sons. One thing that really adds unnecessary stress and difficulty to her life is the US Disability system. She is forced to live in a life of poverty to qualify for benefits she needs to survive. She works part-time and constantly juggles trying to secure a better life for her kids while trying to make sure she doesn't disqualify herself for Medicaid. The lack of social welfare net in the US is a travesty that forces many into poverty and adds layers of hardship for disabled folks here." Jessica, your thoughts?

Jessica Slice: Yes, that is absolutely true. The highest income you can get on SSI is about $1,000 a month. Then, if a parent is receiving Social Security insurance, then they have to cobble together other governmental services in order to support their family. WIC and subsidized childcare, and using Medicaid to have their own assistance. It is such a complex and impossible to navigate system that it puts parents in this impossible position. It is a completely unsustainable way to live. Can anyone imagine having to survive, particularly in a major city, on $1,000 a month? Even if you receive housing subsidies, and that's not to mention how inaccessible a lot of housing is. I think the blame is placed on the disability, but the blame is actually in a system that makes it nearly impossible to survive.

Alison Stewart: I went on Reddit to find posts from kids with disabled parents. I want to read this to you. This person posted. "My dad had polio as a baby and always had a paralyzed leg. He could drive a stick shift, ride a bike, do almost anything except run. Honestly, I didn't know any different. He was a great dad. I felt lucky to have him. He was way better than any of my friends' dad. Then my brother, who's a year older than me, was born deaf. Like our dad, my brother's very capable and accomplished. I was proud of both of them and think I have more empathy because of them." Did you get to talk to any kids for your book?

Jessica Slice: I didn't. I mean, my own. I have heard from a lot of kids after, and a lot of kids are saying what this person you found said, which is that they feel thankful to have had a disabled parent. I'm not saying that's always the case. I think of this in a couple ways. One, I think any characteristic of a parent can help and hurt a child. The example I've given before is if I were a surgeon, my children would benefit because I would probably make a lot more money, and I would have this specific set of skills.

I would probably have access to certain settings, they would benefit, and then they would probably also suffer because I would work long hours. I would have such an intense job. I would be called away. I think that anything about us has ways that our children suffer and benefit. I also think about this idea of empathy with our kids and disabled parents. People say, "Well, aren't you worried they'll have too much responsibility?" Or, "Shouldn't a parent just be like a blank slate with no needs, so your kids never feel like they have to carry any of your burden?" I think there's a balance there. I think for children to watch a parent be honest about needs and to have like a respectful relationship that does include taking and giving help, I think that is okay. I think my kids would be well served to grow up having the capacity to think about other people and what other people are experiencing and need.

Alison Stewart: The name of the book is Unfit Parent: A Disabled Mother Challenges an Inaccessible World. It is by Jessica Slice. Jessica, thanks for being with us, and happy Mother's Day.

Jessica Slice: Thank you so much. Happy Mother's Day to you.