Jessica Slice on What We Can All Learn from Disabled Parenting

Debbie:

Hey Jessica, welcome to the podcast.

Jessica Slice:

Thank you so much for having me.

Debbie:

I’m looking forward to getting into your book. I was approached, I think, by your publicist and I was like, ooh, this looks like a really interesting book. It’s a little different from the traditional kind of parenting advice fair that we do, but I was so intrigued by your story. And I know there’s a lot of parents in my community who are disabled, whether that’s disabled through their neurodivergence or some other way. And I just think there’s so much that we can explore together that would be really relevant to my audience. So I’m excited to get into it. So I just want to, sometimes I kind of dive right into the deep conversation and I forget to mention the name of the author’s book until the end. So I’m actually going to say that upfront. So your book, which is coming out in April is called, Unfit Parent: A Disabled Mother Challenges an Inaccessible World. So we’re going to get into that today. But as a way to kind of bring us into the conversation, would you kind of tell us a little bit about your story just so we have some context for your disability and how it manifested and how you came to be in the space that you’re in now.

Jessica Slice:

Yeah, of course. So I am 42 and became disabled at 28 very suddenly. I was on a hike, got heat exhaustion, and that triggered a neurological condition that had been latent called dysautonomia and POTS, which is now much better known than at the time because of its impact of long COVID as well. And as it turns out, my POTS was secondary to a genetic condition called Ehlers-Danlos syndrome. So I went from a runner, a business owner, someone who was just like a high, kind of a high performer, very active, very motivated to someone who could barely get out of bed. And my symptoms have not really changed measurably since the day I became disabled. So I have been almost entirely bed bound or if I’m not in my bed, I’m in a wheelchair since I was 28. I’m 42 now.

Debbie:

Yeah, thank you for sharing that. yeah, POTS is something that has actually come up a lot. And I didn’t realize that it was also something that people who are suffering with long COVID are experiencing. But that is a term that definitely I feel like has become more, just had more awareness in the past couple of years.

Jessica Slice:

Yeah, I went through the process that I think so many women have been through that when I got sick, doctors kept saying I was maybe just anxious or focused too much on my body or, you know, kind of inventing my own symptoms. And I think that that does still happen. But I think at least with POTS, there are more doctors who have heard of it and who look out for it.

Debbie:

Yeah. Well, I guess that’s one of the bright spots, I guess, and just what we’ve been learning over the past couple of years. In the neurodivergent space too, there’s just so much more awareness. I feel like things are moving both much quicker and certainly not fast enough. But in the opening of your book, which is a memoir, but it’s also like a reported memoir, good journalism and anecdotes and statistics. So it was just such a wonderful read. I really enjoyed this book. In the opening, you said, part of me wants to spend this whole book defending why I am just as worthy as a non-disabled parent. And you talk about the fact that disabled parents are everywhere, making up at least 10 % of parents and that you’ve been waiting to be included in mainstream conversations. That statistic really jumped out at me. Can you talk a little bit more about this population of parents which are maybe largely hidden or just kind of missing from so many conversations?

Jessica Slice:

Yeah, I mean, I think there’s a few reasons. One, and I think the biggest reason why we’re hidden is because we hide ourselves. Disabled parents are much, much more likely than non-disabled to have their children removed by child protective services. So we have this omnipresent threat of losing our children. And in 22 states, it is legal to remove a child on the grounds of parent disability. And parents know that. And when I interviewed attorneys who represent disabled parents who have lost custody of their children, they say that they think almost all parents who lose custody are disabled if you include mental illness under the umbrella of disability. Also, every disabled parent I interviewed who gave birth had social services visit them in the hospital and question their capacity to parent. And so the threat of, I mean, as you know, as a parent, like the threat of losing your child is the most terrifying threat. And so to be vocal about your disability as a parent is a risk. And so while we, you know, there’s like six to 10 million of us in the U S but it is a real decision to be public about your disability and what your parenting looks like.

Debbie:

So when you went down the path, and you write extensively about your decision to become a parent and navigating all that that entailed. I’m just wondering about your own process of discovering the barriers that you were going to be facing. Was it kind of like this slow unfolding of like, my gosh, I didn’t think about that this was going to be an issue or this was going to be a consideration? What was your awareness of all of the challenges that disabled parents face when they’re starting this process, whether they’re adopting or doing foster care or becoming pregnant themselves?

Jessica Slice:

You know, I mean, I think there’s a few things that influence this. One, I wasn’t trying to get pregnant. I had seen an obstetrician and my own unique genetic profile made pregnancy too risky, or at least, you know, according to what risk I was willing to take and that the doctor advised. And so accessing accessible medical care as a disabled person can be quite difficult. And I also interviewed disabled people who received or who were rejected by fertility clinics, you know, and I didn’t encounter any of that because I didn’t try to. Well, actually, that’s funny. I didn’t write. I don’t know if I wrote about this in the book. I did try to freeze my eggs early on and was rejected, but was able to work it out. So, yeah, I didn’t have this heartbreaking process of trying to get pregnant. And when we became foster parents, we were not intending to adopt. And so I wasn’t going into it with my heart set on building a family. were really fostering because we felt like we had this moral obligation if we had extra space in our house and the time to provide housing for a child who needed it. And looking back, my view of the foster system at the time was overly simplistic, but I did think, okay, we have space, we have time. We should parent. And we thought we’d have an older kid. We thought a child would stay with us temporarily. 

And so I kind of became a parent in an atypical way. But even getting my foster license, it required some physical capacities that I don’t have. The first time I tried to take the classes, they were held in a room that was too hot and I don’t thermoregulate well and I started to get heat exhaustion and had to stop. And when I asked for accommodations, they said, If I couldn’t sit in a hot room for four hours, then I probably wasn’t suited to be a parent, which obviously is not overlapping skillsets. And so I did, and I also had to get permission from a doctor that would say I was suited to be a parent. But all of that said, I am someone who is just resourced in that I don’t. I’m not neurodivergent, like planning. the kind of executive function that it took to coordinate getting my foster license, I was able to do. I also had the financial resources and the education to make it possible. You know, I think there are disabled parents who encounter many more obstacles than I did in becoming parents.

Debbie:

Before we get more into your parenting journey, I want to touch upon what you talk about in the book is the privilege that you acknowledge having of having an acquired disability. And I thought that was interesting. So one of the things that you wrote early on in the book is that you’re surprised when the world isn’t designed for you. And you know, you’re kind of talking about the privilege that you are aware of, of having this acquired disability. Could you talk a little bit more about that? You were just saying that you recognize that there are some, there are some barriers that you were up against that are kind of minimal compared to or lesser than compared to what some other people have faced in their journey to becoming parents.

Jessica Slice:

Yeah, I mean, so there’s these actual concrete barriers that for me can be less because of financial resources or access to professionals or that my network of friends includes attorneys and these kind of hard to quantify privileges. But then also, I think a lot about how I retain this level of outrage about not being included that I don’t know if I would have been able to sustain if I had been disabled my whole life. But because I went 28 years in a body that was so accepted by the world and with capacities that were really celebrated by the world when it shifted. And now, you know, as a wheelchair user, as someone with a lot of physical limitations, I’m just shocked every time the world’s not accessible. So I’ve never been able to go into my daughter’s schools. Like she’s happened to have attended only schools that I can’t go to. And I’m horrified every single time. And I don’t know if I had spent so much time not able to enter places, if I would be approaching life, maybe internalizing that exclusion or at least assuming that I would encounter that exclusion. And so I wonder how much of my perspective is influenced by that.

Debbie:

Yeah, thank you. That’s super interesting. And I want to go back to something that you were talking about earlier with regards to child and protective services. And you have a chapter later on in the book about that. And you feature an interview with an attorney who argues that demanding someone parent without support is discriminatory. And that jumped out at me. In the neurodivergent space, we talk about this misguided goal that a lot of families have of wanting their child to be independent when really what we’re, you know, should be working towards is self-determination and that we are all interdependent, really. And so I was thinking of that when I read this quote. Can you talk a little bit about this idea that parents should be expected or the law wants parents to do this independently without any support?

Jessica Slice:

Right. mean, but I think what’s so ironic about that is no parent can do it without support. But for a few reasons, disabled supports lead to child removal. So one is that disabled people are allowed to earn below minimum wage by many organizations and by law. Two disabled people are much more likely to live below the poverty line because if you live on social security insurance, your max monthly income is $997. And so then you’re obviously relying on subsidized housing and WIC. so you disabled people are constantly encountering the social safety net and government agencies. And for many of those people, they are required to report. They’re what’s called mandated reporters required to report any concerns about parenting. And so there’s just a much larger exposure to people judging one’s parenting. And then there is so much, what’s the word? Not discrimination, what’s prejudice against disabled people? Here, can I say that sentence again? There’s so much prejudice against disabled people and unfair assumptions about our capacity to parent. 

And so we’re unfairly judged within those contexts. And then also the very nature that we often need help with housing and with food is then considered a reason why we might not be good parents. So there’s this whole convoluted system where it looks like needing help equals being a bad parent. But my argument is that every single parent needs help and anyone who’s pretending otherwise is absolutely crumbling under the pressure. Most of my friends are non-disabled parents and all of them are exhausted and all of them are desperate and all of them feel like they’re falling short. So I think all parents need help. But I think for someone who’s not living below the poverty line, they are able to kind of piece together haphazard supports that make it so they survive and make it so they don’t have child protective services called. But no one’s thriving if we’re all living under this delusion that we should be able to do it without help. So if we were to fully embrace that parenting needs to be a community and shared activity, then not only would disabled people get custody, but also all parents wouldn’t feel this impossible burden that is too heavy for everyone.

Debbie:

Yeah, you’re making me think of something you wrote in the book about, I think it was your doula who was talking about that parents who are suffering the most are those who deny their own needs. you know, again, I keep kind of pivoting this to the neurodivergent conversation, but so many neurodivergent kids, for example, right, have to do so much work to be able to show up in environments that weren’t designed for them that they end up having these kind of really great emotional intelligence, awareness and ability to advocate in all of these things. And we as parents, there’s so many demands on us that we become really resourceful. And similarly, you talk about that that’s one of the ways being a disabled parent may actually make parenting easier, right? And I’m using air quotes when I say easier, but can you talk a bit more about that, the ways that being disabled actually supports and can make being a parent more peaceful or less stressful or how maybe you’re designed to know how to get what you need to support yourself and your family?

Jessica Slice:

Yeah, mean, I could talk about this particular topic all day. But if I think about who I was before I was disabled and the way I lived at that time, which was like I mentioned, a major perfectionist, major achiever, sort of like no mercy to myself or anyone else. And I think about that version of me becoming a parent, it would have destroyed her because parenting, like by its very nature, is messy and complicated and impossible to succeed at and harder than any of us can manage. And it’s also like you have to confront your own fragility and the fragility of your children and the unpredictability of life. And it does all of these things. But for me, I became disabled six years before I became a parent. And becoming disabled forced me to confront all of those things. I became very fragile and was unable to work. I stopped earning an income. I went through a divorce. went from earning a lot of money to earning no money and living in a one-bedroom apartment by myself watching lifetime shows with my little sister. I had this complete shift in how I lived my life. And then eventually that led to an introduction to disability culture and the disability community. And with that, I started to really embrace all these new characteristics of a good life, like acceptance of its imperfection and acceptance of my imperfection and releasing the control I had held onto so desperately and problem solving skills and a capacity to enjoy smaller, less interesting and less beautiful days. 

And so I developed these skills through disability culture and that community, which I would guess a lot of parents in your community relate to with the neurodivergent community. And then when I became a parent, I had already been practicing those things. And so when parenting both of my kids, when there would be complications or difficulties or when I needed help or when it was harder than I expected or when my needs were confronted with their needs in inconvenient ways. I was already equipped to manage that and it didn’t flatten me and scare me the way it would have before becoming disabled. And I have found through my interviews and research that that’s actually the case for many or all disabled parents, that the skills we use to survive as a disabled person in an unwelcoming world apply directly to parenting. that instead of, that we’re often considered unfit parents, but in reality, we have really useful skills as parents and are particularly well-equipped to be parents.

Debbie:

Yeah, there’s a quote that I pulled out that I just want to read. First of all, I’ve said this already, but the writing is just such a pleasure to read. It was really so thoughtful and beautifully written. I just, I kept like when I’m researching for an interview, I’m, you know, I’m reading with my computer next to me and I’m like pulling out quotes and I literally have three pages of quotes. So a lot of it jumped out at me. Yeah. But I want to share this one. You said disabled people with our bodies and minds that change and shift unpredictably and our evolving needs offer wisdom to those who want to be parents. We’ve had the illusion of control pried from our hands and found ways out of the shame the suffering can bring. In its place, we’re left holding heart shattering awe. And I just thought that was, it just gave me chills when I read that. I just, so it kind of captured this journey. you talk, you know, in the book, you say, I wouldn’t go back. Like I wouldn’t change who I am and not be disabled because of what it has brought to your life.

Jessica Slice:

Yeah, and I don’t want that to ever sound too bright-sidey or overly simplistic, but it is true. I do mean it. And not every disabled person would say that or every chronically ill person would say that. And I think it’s the same, like people in my family and many people in my life are autistic. And I know people have all sorts of relationships with their neurodivergence, but I think for many people, disability or neurodivergence, offers a relationship with life and with truthfulness that is, I don’t know, that is like restorative and that actually makes our lives feel more real. I was thinking about it. I was thinking a lot about it over this last week and I don’t know, maybe this will end up too far afield and you’ll want to cut it. But I recently lost a dear friend last week who’s my age. She had cancer and died and has three kids. I was thinking about how sad I am about her death and how, you know, I was kind of thinking to her in my mind after she died that like, I’m so sorry, you’re missing this. I’m so sorry that you don’t get to see your kids grow up. And I want so badly to have a long life with my children. And I think before I was disabled, all of my perfectionism and all of my desperate attempt to control everything was with this diluted sense that I could just work hard enough and outrun my own mortality or the reality that every single one of our lives is fragile and temporary. And there’s more heartbreak acknowledging that we’re fragile and living in a body that is like a constant reminder of that. But ignoring it the way I did for so long felt like it was destroying me, like it was corrosive. Because we always know deep inside that there’s no working our way towards perfection or outrunning our mortality. And so, I don’t know, I think there’s something magical or something like that allows us to access something beautiful when we so deeply crave lives that will not end, but admit that they do. Like when we can hold both of those things at the same time, I think there’s something true there or something magical there. And I wouldn’t give up that knowledge, even though it is very, very painful.

Debbie:

That’s so beautifully stated. And I’m so sorry to hear about your friend. That sounds like a devastating loss. I’m so sorry about that. One of the things that you write about that kind of ties to what you were just speaking about is this idea of creative adaption in the context of how disabled people may approach parenting life. You said that we create our lives from scratch and that really jumped out at me as well. You know, the freedom in that, you know, of realizing, as you said, we really don’t have any control and that’s something that people may internally know, but they fight with that. And it sounds like you’ve surrendered to that. Can you talk a little bit about this idea of creative adaption and what you mean by that?

Jessica Slice:

Yeah, well, and also, I mean, I haven’t surrendered to it. I constantly have to, but I think I know it and I work to surrender to it. I think the work of my life is trying to figure out what I’m in control of and not. But for creative, like, adaption or adaptation, I think an example that I’ve been thinking of recently is strollers because there’s a lot of very expensive and interesting stroller options out there and a lot of debate around what’s safer. Like, is it really safe to have a car seat that folds and unfolds into a stroller and all of this stuff? And I’m kind of opted out from any of that discussion because I cannot push a stroller in my wheelchair. It’s just not possible. The physics of it do not work. And so when I’m out with my infant, he’s on my lap and I use this Velcro strap thing that was originally designed for work from home parents to be able to attach their babies to their laps during the pandemic and attend Zoom meetings. So it’s $30. I bought that and then some friends of mine added some extra material so that the size could be more flexible to allow for big puffy winter coats to fit inside. And so when I’m on my wheelchair, my baby’s like tucked inside my coat in this Velcro strap thing. And that’s my version of a stroller. And so it’s kind of just starting from scratch. It’s like, OK, I need to go in the world. I need to be sitting down in my power wheelchair. The baby needs to be with me. How can that happen so that I have my hands free? And I don’t know. mean, it’s a lot of work to start from that place. But there’s also a lot of freedom. then you’re not like, it’s easier to avoid the sense that one purchase or the right purchase or the perfect purchase is going to make parenting easier or is going to insulate your child from harm because I just have to opt out from most of those conversations.

Debbie:

Yeah. Yeah. So interesting. I’m reading about that in the book, and you talk about the fact that this is another quote that I wrote down. Disabled people are systematically excluded from these false dichotomies, but that your exclusion from mainstream conversation isn’t merely unjust. It actually hurts everyone because your outsider perspective offers solutions and new approaches that would benefit all parents. I think I’m just trying to think of how to kind of neatly wrap this up. There’s so many things that we could really explore together. But I think about this kind of public perception or kind of the mainstream parenting culture, right? And it’s something I think about again, pivoting to neural divergence. I’m always thinking like there’s so many resources available that are written or offered through the context of this assumption of a neurotypical experience. And so there’s always this kind of adaption and interpretation that has to happen. And in reading your book, I kind of recognized how pervasive that is within the disability community as well. And I’m just wondering what you think or what you would encourage parents listening to this show to kind of think about differently or ways that we can just be more aware of and supportive of the paradigm shift, whether that’s understanding our own ableism or being more aware of the systemic barriers that exist and what can we do to fight for more inclusion. What would you like maybe even to zoom out? This is like the longest question ever, and I apologize. But maybe what would your wish or hope for the book be in terms of its impact in the world and what it would inspire readers to think about or do be?

Jessica Slice:

So a couple of things. One, to your specific audience, think most of your audience is parents of neurodivergent kids, right? Which also means just because of the way genetics works, a lot of your audience is probably neurodivergent. So I would guess the book would speak to your audience for a few reasons. One, think when your kid is neurodivergent, which I also have experience with, parenting you can feel like you’re failing the mainstream parenting game because school looks different, spring break looks different, holidays look different, all of these things. And I think the disabled community is something to embrace as a parent of an art-a-virgin kid because we’ve already said, forget all that. And I think there’s a real community to be had there not as a way to only sell my own book, but I do think the book has something to offer parents of neurodivergent kids for that reason, because it offers an alternative to this exclusionary and also unsustainable way of parenting that we’re sold. And then my real, I mean I really started writing the book for disabled parents as a way to say like, okay, we’re here, we exist. Like your experience is valid and real and beautiful. And then as I wrote, I realized that I wanted non-disabled parents to really read it too, because I went from thinking we needed to prove that we should be included to hey, like you want us here because we’ll make things easier for you. Like we have something to offer. 

And I think on a practical level, the first step to including us is being aware of access deficiencies in your immediate environment and addressing those. if there’s a meeting with other parents or a PTA meeting or a play date, like asking about access needs and striving to address them, pay attention to if there’s a ramp going into a place and if there’s any parent who might need one. Is there someone who’s staying home because they know they wouldn’t be able to go that, like, as a disabled parent, I spend so much time advocating for myself in the world. And it makes me tear up every time another parent takes on some of that work for me because it’s just a little bit of a load off. And I think it’s something we can all do for each other. And even if you’re, yeah, if there’s a meeting and just include on the email about the meeting, Hey, does anyone have any access needs? Do you want everyone to mask? Is there anyone here who’s immunocompromised? Is there anyone who’s sensitive? Like just say, have kind of an open invitation for people to express needs. I think that is incredibly freeing for everyone involved.

Debbie:

Yeah, that’s wonderful. Thank you. And I want to just also mention this for listeners, that if you haven’t heard the episode I did with Emily Ladau, who wrote De-Mystifying Disability, I will have a link to that in the show notes. Jessica refers to her work in Unfit Parent as well. And it was a great conversation. And I’m going to just really encourage listeners, I hope you’ve enjoyed this conversation and you can hear how thoughtful and yeah, just how thoughtful Jessica is about sharing this important information. yeah, there’s just a lot to think about, a lot to consider. And I would encourage you all to check out her book. It’s called, Unfit Parent: A Disabled Mother Challenges An Inaccessible World. I think April 15th is what I see as the pub date. So check that out. And Jessica, is there anywhere in particular you would like listeners to go to engage with you online or in social media?

Jessica Slice:

Yeah, you can find me on my website, which is jessicaslice.com and my Instagram, you know, I’m on there as @JessicaSlice and that’s really my only active social media. I have a sub stack that I write on monthly about disabled parenting and also usually include whatever poem I’ve been reading that month. And thank you for having me. I’ve been listening to your podcast for a while and a lot of my friends do too, and I’m thankful to be here.