
Author Jessica Slice wrote a book about being a disabled mother.
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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 Rule about her new book, Lessons from My Teachers. And we'll hear excerpts from our recent Get Lit Book Club event with Lailah Lalamy, the author of the Dream Hotel, plus a special live performance from New York based band Imaginawa. And 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 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 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 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? Or are you a disabled parent? How do you cope with the expectation of others? And what was the expectation you had for yourself? What's a change from the quote unquote norm that you you worked out just fine in your family? Call us or text us now at 2124-3396-9221-2433. WNYC you can call in, you can join on the air, or you can text to us at that number. So, 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. I mean, 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. But also, I changed in sort of a deeper way. Before disability, I sort of 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. And 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? And when I found disability culture, I sort of 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. 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.
Host
Your body after you were diagnosed? And 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, so it took about two years to get diagnosis. I think, you know, 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. But it, you know, after a couple of years, I got that POTS diagnosis. And 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. And 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, you know, that I had to spend almost all of my time taking care of my body. And I remember one day just thinking, well, this is a day of my life. Like this is one of the days that I am alive. And so I started writing down in my journal, this too is a day of my life. And 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. And 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. And then the other shift was a few years later when I started reading Disability theory and reading the works of disabled authors. I kind of 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 one community of people, the non disabled community. And now I was part of disability cult. 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. And I was like, oh, I get to be one of you. Well, then this isn't, you know, a pure loss. There is, 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
You know, 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. And 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 parenting, disabled parenting?
Jessica Slice
I really wanted people to think about the fact that the line between disabled and not is not permanent. And it's also pretty fuzzy that all people have bodies that have needs and parenting really causes you to have more needs. And I wanted people to kind of 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.
Host
My guest is Jessica Slice. She is the author of Unfit A Disabled Mother Challenges an Inaccessible World.
Alison Stewart
Listeners, were you raised by a disabled parent? Parent?
Host
What do you want people to know about your life? Or are you a disabled parent? How do you cope with the expectations of others or what was the expectations.
Alison Stewart
You had for yourself?
Host
What has a change from the norm that you worked out just fine in your life? Give us a call or text us at 2124-3396-9221-2433. WNYC.
Alison Stewart
Why did you title the book Unfit?
Jessica Slice
There's a couple reasons. One, disabled parents lose custody of their children far more often than non disabled people. And when those reports are written, they're called unfit parents. And so I wanted to reference that. But two, I have this suspicion that all parents secretly feel unfit. And I wanted to touch on that, that I think we all have this insecurity about, am I good enough? Am I doing this right?
Host
The subtitle says, a disabled mother challenges an inaccessible world. What does that refer to?
Jessica Slice
You know, I think the world is inaccessible for disabled people, which is, you know, the lack of ramps, the lack of accessible spaces, the lack of accessible reproductive care. But I also think it's inaccessible for parents. I think there's a lack of adequate parental leave and a lack of affordable childcare. And I think I wanted to show that there's this between a lack of accessibility for parents and a lack of accessibility for disabled people.
Host
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
Those come up just all the time. And 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. But 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 kind of 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
Well, you know, 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. And disability really pried that from me. And so 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 that sort of, for me, mimicked the transition to disability. And so I felt like I had practice at that. And I think for some people who have had really predictable bodies and lives, that the transition to parenthood can feel especially jar, particularly if you're recovering from giving birth, which can be, you know, its own introduction to experiencing disability. And so 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 Reading, Connecticut. Hi, Kristin. Thank you so much for making time to call all of it today. You're on the air.
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Hi.
Kristin
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. So it has been a challenge throughout both of our lives dealing with this disability. And as she has aged, it's just gotten more and more difficult. But she's been an amazing mom to me. She's so strong. I've, you know, been in awe of her strength throughout all of the challenges that she's had to deal with. I mean, she had her stroke a day after she turned 40, and she's now 65. But it's been challenging for me as well, trying to find accommodations for her as her body kind of breaks down further. It's just amazing how things are so inaccessible even after so many years, you know, after laws have changed. Yeah, it's just been challenging. But I admire how she's been so strong through all of it.
Host
Kristin, thank you so much for calling and your candor. We do appreciate it.
Alison Stewart
Did you want to respond?
Jessica Slice
Jessica sounds like they have just a really special relationship. And 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. But there's this real magnification of that grief when the world is unwelcoming and you. You can't access what you need.
Alison Stewart
In the book, you note that 82%.
Host
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. Right, Right. So. So what are the outcomes of beliefs like that? Because it is, in fact, it's an opinion.
Jessica Slice
It is an opinion, and it's actually not based on fact. So 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 kind of unexpected high quality of life of disabled people. And within medicine there can be a pretty unnuanced way of looking at it. And what the impact is is disabled people receive less cancer screening than non disabled people, which is obviously very dangerous. And when interviewed, doctors say, well, they don't know what the value of treating a disabled person for cancer would be, which is, you know, makes all sorts of assumptions about what kind of life is worth having. And. But 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. But two, even if we were, we wouldn't be very good at predicting what we would want our life to look like. And we don't really know until we're in it. So preventing people from accessing the care that they need, be it fertility care or cancer screening or accessible gynecological appointments, all of that is, you know, based on just a completely inaccurate foundation.
Alison Stewart
Let's talk to Jesse who is calling from New York. Hi Jesse, thank you so much for making time to call all of it this afternoon.
Host
You're on the air. Hi there.
Alison Stewart
Hi.
Jesse
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. And it certainly changed my, you know, 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. But I'm just grateful to have somebody who is shedding light on, you know, that sort of giving visibility to a group of people who are often made invisible. And 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.
Host
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 sort of mutual aid.
Alison Stewart
What's an example of that?
Jessica Slice
Oh, I love that. You know, I've noticed when doing interviews for this book, when I have an interview with another disabled person, we're often doing this like mutual accommodation, mutual aid. So a local NPR reporter came to interview me at my house. And speaking of Jesse and Long Covid the caller, this reporter is very Covid conscious and said, would you like me to test first and mask? And I said, oh, actually, that'd be great. Would you like me to mask and test first? And she said, that'd be great. And she said, I'm actually disabled. And so then I asked what furniture would work for her body, and she let me know. And then she asked me where I would be most comfortable. And we just kind of 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 and it's actually just a way of caring for each other.
Host
Sometimes people respond in a way that.
Alison Stewart
They think is right.
Host
You note in the book, this woman noted a child on the lap of a woman who was using a wheelchair, and she was very, very, very concerned. You point out why that might not be the right response.
Alison Stewart
But what.
Host
How would you ask someone, what would you ask them people to consider before getting involved, before making an assumption.
Jessica Slice
So 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 and control our lives and keep our kids safe. And we act like we know what will keep us safe and what won't. And when a disabled person in the way we parent is unfamiliar, it's easy to say, well, that's. That is unfamiliar. So it must be safe. And what I'm doing is fine. It's like a way of comforting oneself. And 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. I think it's often more of a personal. A personal struggle.
Host
My guest is Jessica Slice. The name of the book is Unfit. 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
1. In a number of states, the actual court system that a family goes through when a child remove is not Accessible. So I think that should be just absolutely changed. Parents should have access to the accommodations they need when going through the system. Be it like 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, and he said they kept being declared 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. And I said, is it like they are being instructed in a language they don't speak? And he said, yes, exactly, exactly. Like we need a translator. And 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. Yeah. So I think the accommodations is one, and 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. But 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. And if your need for help is kind of laid bare by poverty, then it's. Then there's judgment cast on it. And 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.
Host
This adds to a text that just came in.
Alison Stewart
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?
Host
Yes.
Jessica Slice
Yeah, that is absolutely true. So the highest income you can get on SSI is about $1,000 a month. And so then if a parent is receiving Social Security insurance, then they have to cobble together other governmental services in order to support their families. So, you know, WIC and subsidized childcare and using Medicaid to have their own assistance and it is such a complex and impossible to navigate that it puts parents in this sort of impossible position. I mean, it is a completely unsustainable way to live. I mean, 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. So I think the blame is placed on the disability, but the blame is actually in a system that that makes it nearly impossible to survive.
Alison Stewart
So I went on thread it to.
Host
Find posts from kids with disabled parents. And I want to read this to you.
Alison Stewart
This person posted.
Host
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. And 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
You know, 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. And 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. 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. And people say, well, aren't you worried they'll have too much responsibility? Or shouldn't a parent just be kind of like a blank slate with no needs? So your kids never feel like they have to carry any of your burden. And, you know, I think there's a balance there. But I think for children to watch a parent be honest about needs and to have like a respectful and 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.
Host
The name of the book is Unfit 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.
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Podcast Summary: All Of It – "A Disabled Mother Writes About the Challenges of Parenting in an Inaccessible World"
Introduction
In this compelling episode of All Of It, hosted by Alison Stewart on WNYC, listeners are introduced to Jessica Slice, the author of Unfit: A Disabled Mother Challenges an Inaccessible World. Airing on May 9, 2025, the episode delves into the intricate challenges faced by disabled parents in an often inaccessible society. Stewart sets the stage by highlighting the significance of Mother’s Day and the broader conversation about parenting, accessibility, and societal perceptions.
Guest Introduction and Background
Alison Stewart welcomes Jessica Slice, a mother of two and a prominent writer for esteemed publications like The New York Times and The Washington Post. Jessica’s book, Unfit: A Disabled Mother Challenges an Inaccessible World, combines interviews, studies, and personal experiences to shed light on the systemic barriers that disabled parents encounter.
Jessica Slice's Life Transformation
At [03:18], Jessica shares her life before becoming disabled. In her late 20s, during a hiking trip in 2011, Jessica faced a life-altering incident that resulted in her disability. Prior to this, she led an active, perfectionist lifestyle—working long days, maintaining a rigorous exercise regimen, and striving for personal excellence. Post-diagnosis, her daily activities were drastically altered; she became largely reliant on a power wheelchair and had to cease many of her former pursuits.
This profound change prompted Jessica to reassess her identity and values. As she explains at [03:43], she transitioned from believing that hard work could secure an ideal life to embracing a life that felt more authentic and sustainable within the context of her disability. Discovering disability culture provided her with a sense of community and belonging, transforming her perspective on what constitutes a fulfilling life.
Disabled Parenting: Challenges and Insights
Jessica discusses the core theme of her book—parenting as a disabled individual—in depth. At [07:40], she explains that her motivation to write Unfit stems from the pervasive invisibility and marginalization of disabled parents. She emphasizes that disabled parents often face unjust scrutiny and higher rates of child custody loss, as highlighted by the statistic that 22 states consider disability a possible reason to remove children from a home.
At [08:26], Jessica raises critical questions about society’s perception of disabled parents. She challenges the notion that disabled individuals are inherently inadequate for parenting, advocating for a recognition of the continuum of needs that all parents experience. By accepting and addressing varied needs, society can develop more inclusive and supportive environments for all families.
Listener Experiences
The episode features heartfelt calls from listeners, underscoring the widespread impact of disabled parenting. At [13:01], Kristin from Reading, Connecticut, shares her experiences of raising a disabled mother who suffered a catastrophic stroke. Despite the increasing challenges, Kristin admires her mother’s strength and resilience, highlighting the ongoing accessibility issues even after significant legislative advancements.
Jesse from New York, calling in at [17:05], expresses gratitude for Jessica’s work, particularly as someone who became disabled due to Long Covid. Jesse appreciates the visibility Jessica brings to disabled parents, especially amidst prevalent denialism surrounding Long Covid.
Society's Perception and Medical Misconceptions
Jessica tackles the problematic beliefs held by medical professionals regarding the quality of life of disabled individuals. At [15:20], she reveals that 82% of doctors surveyed believe disabled people have a worse quality of life—an opinion not rooted in fact. Jessica introduces the concept of the "disabled paradox," where disabled individuals often report higher life satisfaction than non-disabled individuals anticipate. This misconception leads to detrimental outcomes, such as reduced cancer screening for disabled patients based on unfounded assumptions about their quality of life.
Overcoming Inaccessibility: Mutual Aid and Community
A poignant example of mutual aid is shared by Jessica at [18:12]. She recounts an interaction with an NPR reporter who, as a disabled individual, reciprocated accommodations by masking and testing first. This exchange exemplifies the reciprocal nature of support within the disabled community, fostering a culture of mutual care and respect.
Legal and Systemic Changes Needed
Jessica outlines the urgent need for systemic reforms to support disabled parents. At [21:04], she identifies two primary areas for change:
Accessibility in the Legal System: Courts must become more accessible to disabled individuals undergoing family custody cases. This includes providing necessary accommodations, such as translators and accessible facilities, to ensure fair proceedings.
Redefining Parenting Assistance: Society needs to shift its perception of parenting assistance from a sign of inadequacy to an acknowledgment that all parents require support. This involves expanding access to parental leave, affordable childcare, and other supportive services irrespective of income levels.
Additionally, Jessica criticizes the U.S. disability system for perpetuating poverty among disabled parents. She highlights the inadequacy of Social Security Insurance (SSI) benefits, which barely sustain families, and the complex, often unattainable nature of combining multiple governmental assistance programs to achieve a livable income.
Reflections on Parenting and Empathy
Jessica reflects on the profound connections between disability and parenting resilience. At [11:37], she posits that disabled parents are often better equipped to handle life's unpredictabilities due to their experiences with disability. Managing a child’s needs amidst personal physical limitations requires adaptability and foresight, qualities that translate seamlessly into effective parenting.
Furthermore, Jessica discusses the development of empathy in children raised by disabled parents. She believes that witnessing a parent's honest navigation of needs fosters a respectful and empathetic outlook in children, teaching them the importance of community and mutual assistance.
Conclusion
Alison Stewart wraps up the episode by reiterating the importance of Jessica Slice’s work in illuminating the struggles and strengths of disabled parents. She wishes Jessica a Happy Mother's Day, acknowledging the vital conversations sparked by Unfit. Jessica reciprocates the sentiment, emphasizing the necessity of community support and systemic change to create an inclusive world for all parents and their children.
Notable Quotes
"There is no other me that was waiting on the other side. And then the other shift was a few years later when I started reading Disability theory and reading the works of disabled authors. I kind of 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." – Jessica Slice [04:57]
"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." – Jessica Slice [15:20]
"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 and it's actually just a way of caring for each other." – Jessica Slice [18:12]
"Needing assistance is not an indication that you're a bad parent." – Jessica Slice [21:04]
Timestamped Highlights
00:00-00:28: Progressive Insurance advertisement (skipped as per instructions).
00:28-02:31: Alison Stewart introduces the episode and guest Jessica Slice.
02:33-03:18: Jessica Slice begins sharing her backstory before disability.
03:18-07:40: Discussion on Jessica’s life transformation post-disability and the genesis of her book.
07:40-13:01: Delving into the challenges disabled parents face, supported by listener calls.
13:01-17:04: Kristin’s story highlights the enduring struggles despite long-term disability.
17:04-21:04: Jesse’s perspective adds depth to the conversation on Long Covid and visibility.
21:04-27:17: Legal reforms, societal perceptions, and reflections on parenting conclude the discussion.
Final Thoughts
This episode of All Of It offers an empathetic and insightful exploration of disabled parenting, challenging listeners to rethink preconceived notions and advocate for a more inclusive and supportive society. Jessica Slice’s narrative serves as both a personal testament and a call to action, urging systemic change and greater societal understanding.