Speaker 1: Pushkin.
Speaker 2: The way I treated myself inside was like goodness was
Speaker 2: just around the corner. If I could make a few
Speaker 2: more right decisions, or work a little bit harder, or
Speaker 2: do things a little bit better, then my life would
Speaker 2: be good or I would be good like I didn't
Speaker 2: think I need to like myself for who I am.
Speaker 2: I thought I will eventually earn the reward of my
Speaker 2: own respect.
Speaker 1: Jessica Slice spent years waiting for that elusive day when
Speaker 1: she might actually like herself.
Speaker 2: For all those years, I thought that it was in
Speaker 2: my control to be perfect, or to form a perfect life,
Speaker 2: or to be good enough. And that is a message
Speaker 2: from the world, and disability is a counter argument. It's
Speaker 2: a way of saying everything we believe about what matters,
Speaker 2: or about what we should strive for, or about what
Speaker 2: we're capable of, like all of that may be wrong.
Speaker 1: On today's show, when we let go of society standards
Speaker 1: of goodness, who can we become? I'm maya Schunker, a
Speaker 1: scientist who studies human behavior. And this is a slight
Speaker 1: change of plans, a show about who we are and
Speaker 1: who we become in the face of a big change.
Speaker 1: Jessica Slice is an author who writes about living with disability.
Speaker 1: She's written multiple books and has been published in The
Speaker 1: New York Times, The Washington Post, The Atlantic, and The Guardian.
Speaker 1: Jessica and I began our conversation by talking about what
Speaker 1: she was like in her early twenties before she became disabled.
Speaker 2: I was a very high achiever. I was relentless in
Speaker 2: my striving. I started practicing real estate at twenty five
Speaker 2: and dove into that so thoroughly that within a year
Speaker 2: I had started a company with some other women. I
Speaker 2: was named one of the best realtors in the United States.
Speaker 2: Oh my god, Okay, yeah, it's so bizarre. And I
Speaker 2: was married to a high school sweetheart, I owned a company,
Speaker 2: was earning more money than anyone should in their twenties.
Speaker 2: But the thing that was really true about that time
Speaker 2: is that I was so hard on myself. Like the
Speaker 2: way I treated myself inside was like goodness was just
Speaker 2: around the corner. If I could make a few more
Speaker 2: right decisions, or work a little bit harder, or do
Speaker 2: things a little bit better, then my life would be good,
Speaker 2: or I would be good. And because that's not possible,
Speaker 2: because we can't actually will power ourselves into goodness, It
Speaker 2: made me just sort of hate myself, and I had
Speaker 2: this corrosive shame. I couldn't have identified it as shame,
Speaker 2: but I had this suspicion that I was so bad,
Speaker 2: and then the thing I was doing was trying so
Speaker 2: so hard to be good and to have a good life.
Speaker 1: Was that just a natural proclivity, natural disposition, or do
Speaker 1: you think there was something in the way that you
Speaker 1: grew up or some experience you had that gave rise
Speaker 1: to this concern that you were bad in some way.
Speaker 2: I experienced a lot of loss in my childhood. I
Speaker 2: had a sister die, I had friends die. I had
Speaker 2: a kid in my second grade class die, and then
Speaker 2: one in my fourth grade class, an uncle and a
Speaker 2: grandfather and a cousin all within a few years. I
Speaker 2: went to so many funerals before I was even a preteen,
Speaker 2: including that of my younger sister, and I think I
Speaker 2: had to come up with an explanation. And so it
Speaker 2: was like, these are bad things happening that must somehow
Speaker 2: be my fault, because little kid logic is always it
Speaker 2: must somehow be my fault, and so the only thing
Speaker 2: to do is to be better, to be a good kid,
Speaker 2: to be good, and so then I was just completely
Speaker 2: devoted to being good and that kind of propelled me through.
Speaker 2: You know, I was still just being good in my twenties.
Speaker 2: But the thing I did think very concretely was I'm
Speaker 2: going to figure this out. Like I'm still dissatisfied. I'm
Speaker 2: still not there. I still have this emptiness, but it
Speaker 2: was like there was always this thought that there was
Speaker 2: a way to get there and.
Speaker 1: This elusive feeling of goodness. How would you have defined
Speaker 1: it at the time, and what would it have felt
Speaker 1: like to feel good?
Speaker 2: I think I would have liked myself. I would have said,
Speaker 2: when I'm a better improved person, I like myself. Like
Speaker 2: I didn't think I need to like myself for who
Speaker 2: I am. I thought I will eventually earn the reward
Speaker 2: of my own respect.
Speaker 1: Let's fast forward to twenty eleven. You were in your
Speaker 1: late twenties and you and your husband at the time
Speaker 1: bought tickets to go on this epic cruise. Tell me
Speaker 1: about that trip and what your mindset was like going
Speaker 1: into it.
Speaker 2: Gosh, we built this trip up so much. It was
Speaker 2: this luxury cruise ship that was going to Turkey and
Speaker 2: Greece and Italy. We planned this for a whole year,
Speaker 2: like every moment of it was going to be perfect,
Speaker 2: and it's the perfect encapsulation of how I was living then,
Speaker 2: which is there there will be a time where life
Speaker 2: is finally what I thought it could be or what
Speaker 2: I could be. And this trip kind of held all
Speaker 2: this expectation in it. I mean I thought of what
Speaker 2: I was going to wear every day exactly, and which
Speaker 2: restaurants we would go to and which cities and what
Speaker 2: hikes we would take. It was like nothing has been
Speaker 2: planned more than that trip was.
Speaker 1: And so on the tenth day of your trip, you
Speaker 1: were out on a long hike and you started to
Speaker 1: experience some unusual symptoms. So what happened?
Speaker 2: So we were about a mile from the end, and
Speaker 2: I realized that we didn't have enough water, and I thought, Okay, well,
Speaker 2: this is too bad. I'm going to really need to
Speaker 2: rehydrate when we get to the village. But it felt
Speaker 2: like it would be a minor hiccup. But then we
Speaker 2: which it sounds very Greek mythy, but we encountered a
Speaker 2: pack of wild dogs blocking the path and they were
Speaker 2: like bare their teeth, and we had to add all
Speaker 2: this distance onto the hike to get around this pack
Speaker 2: of dogs, and adding that distance onto the hike meant
Speaker 2: that by the time we got to the village where
Speaker 2: I was going to get some food and water and recover,
Speaker 2: I was vomiting and felt really confused. I felt really
Speaker 2: out of it. I had this sense that I was
Speaker 2: sort of separate from the world. And then I just
Speaker 2: rested and I thought, Okay, well, i'll rest today, I'll
Speaker 2: be back tomorrow. And then I woke up the next
Speaker 2: day and it was like I had traded my body
Speaker 2: for a different body. I tried to get down the
Speaker 2: hall to the bathroom and could barely walk. The room
Speaker 2: was like spinning and like it was black around the
Speaker 2: outside of my vision. I just felt I felt so weak,
Speaker 2: and then I woke up every day for the rest
Speaker 2: of the trip almost entirely bedbound. I would try to
Speaker 2: do something and then just have to go right back
Speaker 2: to bed. Made at home, went to a doctor. All
Speaker 2: my blood tests were normal, and I felt no better,
Speaker 2: and I kept thinking every morning that I was going
Speaker 2: to wake up and feel totally fine, and then at
Speaker 2: some point shortly after waking up, I would encounter the
Speaker 2: limits of my body and end up back in bed again.
Speaker 1: You ended up seeing various doctors to try to unlock
Speaker 1: this puzzle of what was going on in your body.
Speaker 1: What did doctors tell you at the time. What did
Speaker 1: they say was causing your symptoms?
Speaker 2: At first, they said it was just my body getting
Speaker 2: over having heat exhaustion and electrolyte imbalance. And then when
Speaker 2: it lasted and lasted and lasted, the nausea and the
Speaker 2: dizziness and the fatigue and this sense that my vision
Speaker 2: was leaving, they said that I was just thinking too
Speaker 2: much about my body, and that I was too focused
Speaker 2: on my health, and that it was probably anxiety. And
Speaker 2: you know, it wasn't too long before I started to
Speaker 2: have other symptoms. My skin sort of changed color. I
Speaker 2: started to get yellowish the bones, and my feet started
Speaker 2: to break, like I would just walk around the house
Speaker 2: and my bones would break. I had little hairs growing
Speaker 2: all over my body. I was losing so much weight,
Speaker 2: and so I was watching my body change. And then
Speaker 2: I was told that, no, nothing is happening. You're just
Speaker 2: too worried. You're just thinking too much about it.
Speaker 1: Wow. You know, there are so many parts of your
Speaker 1: story that are so exceptional. This is one that I
Speaker 1: feel is so universal and so relatable to so many people,
Speaker 1: especially women who feel like their concerns about their bodies
Speaker 1: aren't being taken seriously. Yeah, what did it feel like, Jessica?
Speaker 1: To feel your body changing in these ways that no
Speaker 1: one around you could explain that medical professionals were simply dismissing.
Speaker 2: I felt like they were probably right because I had
Speaker 2: such a tendency to blame myself and to demand perfection
Speaker 2: from myself that I assumed that I was somehow doing
Speaker 2: something wrong. And so I made this massive spreadsheet of
Speaker 2: symptom on set date and what had happened right before it,
Speaker 2: and what supplements I had tried, and what new diets
Speaker 2: I had tried. You know, I had cut out gluten
Speaker 2: and then reintroduced you know, I tried everything, and I
Speaker 2: just kind of thought, well, I could figure this out.
Speaker 2: I also just felt terror because I was experiencing something
Speaker 2: very real and being told that it wasn't real. But
Speaker 2: I was living it inside my own body, and so
Speaker 2: there was just no way to reconcile it. And I
Speaker 2: eventually decided that I must be crazy, that I had
Speaker 2: tricked myself into thinking I got sick on that hike
Speaker 2: and I didn't.
Speaker 1: I mean, you talked about the fact that you were
Speaker 1: always so self critical, right, like always doubting yourself. What
Speaker 1: did this do to the trust that you had in
Speaker 1: your ability to even live in your own body and
Speaker 1: understand what was happening to it?
Speaker 2: I mean, it was gone. It was totally gone. It
Speaker 2: was such a foundational breakdown of identity because I had
Speaker 2: all these ways that I had constructed a really shiny life,
Speaker 2: and all of these ways that I thought I was
Speaker 2: about to have a good life or about to be
Speaker 2: good enough, and then those were all vanishing. You know.
Speaker 2: I wasn't able to work anymore. I was living alone,
Speaker 2: my relationship had ended. I was in a one bedroom
Speaker 2: apartment just trying not to die. Like every day it
Speaker 2: was like, how will I get food today? How will
Speaker 2: I get the things I need to do to stay alive.
Speaker 2: I felt like I was constantly running a fever. I
Speaker 2: was very underweight, even though I was always trying to
Speaker 2: eat more, but I was constantly nauseated. I felt like
Speaker 2: I was going to faint almost all day. Every day
Speaker 2: when I did almost anything, my vision would start to
Speaker 2: black out and I would start to lose consciousness. To
Speaker 2: get food. If I went to the grocery store, I
Speaker 2: actually had to scoot just on my butt on the
Speaker 2: floor through the line at the grocery store. I couldn't
Speaker 2: make it through the line. I couldn't get gas in
Speaker 2: my car. I found this guy at a gas station
Speaker 2: five minutes away, and I got his phone number, and
Speaker 2: if I called him, he would put gas in my car.
Speaker 2: You know, my entire day was the series of problem
Speaker 2: solves because of this intense level of dizziness and nausea
Speaker 2: and weakness and pain. I remember I tried to go
Speaker 2: on a walk at that time because everyone said I
Speaker 2: was fine, and then I started to black out and
Speaker 2: I lay down on the grass and I thought, I
Speaker 2: don't know what's going to happen other than that I'm
Speaker 2: going to die because I I don't know how to
Speaker 2: get help. I don't know what's wrong with me. I
Speaker 2: don't know how I'm doing this to myself, Like how
Speaker 2: have I convinced myself that this is happening if it isn't,
Speaker 2: And how do I get out of here? Yeah?
Speaker 1: How long were you in this torture US state, Jessica,
Speaker 1: where you were in limbo and you were being made
Speaker 1: to question your own relationship with reality.
Speaker 2: It was two years, and then it was August of
Speaker 2: twenty thirteen. I went to a psychiatrist and I said,
Speaker 2: I don't know what's wrong. I'm desperate, but I need
Speaker 2: some sort of medication that will fix this. And I
Speaker 2: described what the last couple of years had been like,
Speaker 2: and it's just this act of profound grace that he
Speaker 2: listened really intently, and he noticed that the times I
Speaker 2: felt the worst was when I was standing upright and
Speaker 2: standing still. And he said, I don't think you have
Speaker 2: a psychological condition. I think you have a neurological condition
Speaker 2: with cardiac implications, where your body can't handle being upright,
Speaker 2: and he referred me to a cardiologist for testing. I
Speaker 2: remember I felt really happy, but also really scared that
Speaker 2: someone would tell me that he was wrong, or that
Speaker 2: it wasn't real. I was so disconnected from my own
Speaker 2: experience and from any belief in myself, you know, the
Speaker 2: slightest breath could like blow me away from this new
Speaker 2: sense of hope or this new sense that maybe I
Speaker 2: wasn't completely delusional about my own physical experience. And then
Speaker 2: there was also the logistics. So the doctor he referred
Speaker 2: me to was in Charlotte, which was two hours away,
Speaker 2: and I had to figure out how to get there.
Speaker 2: I couldn't drive, you know. Every time I would try
Speaker 2: to drive, I would start to faint. And so this
Speaker 2: friend from college was passing through town and I asked
Speaker 2: him if I could pay him to take me to
Speaker 2: this cardiologist in Charlotte, and he did. I was earning
Speaker 2: no income and my insurance didn't cover the doctor who
Speaker 2: could do the test. So I remember I called my
Speaker 2: parents and I asked them if they could lend me
Speaker 2: the three thousand dollars for the test, and they did so.
Speaker 2: I was also just still trying to survive. My whole
Speaker 2: life was a logistic puzzle of survival.
Speaker 1: Eventually, you did receive a diagnosis.
Speaker 2: So I had the testing done. But also around that time,
Speaker 2: my younger sister had developed the same symptoms, and so
Speaker 2: I got the diagnosis of pots postur orthostatic doctor cardio syndrome,
Speaker 2: which basically means my heart has trouble pumping enough blood
Speaker 2: and oxygen to my brain if I'm upright, and it
Speaker 2: comes with a bunch of other symptoms. And because she
Speaker 2: developed the same syndrome, they sent us to a geneticist
Speaker 2: where we found out we also had a connective tissue
Speaker 2: disorder called EDS, which leads to POTS in some people.
Speaker 1: And what were the implications of the EDS diagnosis, Like,
Speaker 1: understanding that there was this underlying genetic syndrome.
Speaker 2: It meant that it was very unlikely that we would
Speaker 2: ever not have POTS or ever be healthy again. So
Speaker 2: what had happened was when I went on that hike,
Speaker 2: the heat exhaustion was a physical stressor that activated this
Speaker 2: neurological condition that activated my body's difficulty with controlling heart
Speaker 2: rate and blood pressure and digestion. And I had spent
Speaker 2: so much time thinking about that hike, thinking how would
Speaker 2: my life be different if I didn't go on this
Speaker 2: one hike? But learning that I had this underlying genetic condition,
Speaker 2: I now know that it was just it was ready
Speaker 2: to be turned on. There was going to be some
Speaker 2: physical stressor at some point that was going to activate it.
Speaker 2: It's not all the fault of these wild dogs in Santorini.
Speaker 2: There was going to be something that did it.
Speaker 1: You know, as all of this was unfolding on a
Speaker 1: personal front, when it came to thinking about your self identity,
Speaker 1: you insisted on identifying as someone who was sick versus
Speaker 1: as someone who was disabled. Can you tell me a
Speaker 1: bit more about that choice.
Speaker 2: I didn't even consider that I was disabled. I thought
Speaker 2: I got sick and stayed sick, like I had this
Speaker 2: body that was operating correctly, and then it stopped operating correctly,
Speaker 2: and that's what illness is. I don't even think I
Speaker 2: thought about what being disabled meant. You know, my sister
Speaker 2: that had died when I was younger was disabled. She
Speaker 2: had seizures, and she had some paralysis and hearing life
Speaker 2: and had a you know, sort of profound disability. And
Speaker 2: I never even considered the word for myself, which was
Speaker 2: funny because, well, I think it's mostly internalizedableism. Because I
Speaker 2: had a disabled parking placard, I was at that point
Speaker 2: receiving disability insurance income. I had the word disability kind
Speaker 2: of hovering around me, but I just always thought it
Speaker 2: was like an incidental term or a practical term, and
Speaker 2: not one that actually applied to me or meant anything.
Speaker 1: Tell me then, about transitioning from identifying as someone who
Speaker 1: was sick to someone who is disabled. What led to
Speaker 1: that internal evolution?
Speaker 2: After the diagnosis, I spent a lot of time trying
Speaker 2: to not be sick. Still, even knowing that it was
Speaker 2: unlikely to be successful, I tried anything a doctor said
Speaker 2: because I thought I could beat it. I was still
Speaker 2: a striver, you know, I was still trying to be sick.
Speaker 2: And then I was in graduate school for social work.
Speaker 2: At that point in my life, it was twenty seventeen.
Speaker 2: I had been sick for what I would have said,
Speaker 2: sick for six years, and I had started to craft
Speaker 2: a new life for myself as a sick person. You know.
Speaker 2: I had moved to California, where the temperature was easier
Speaker 2: for me to manage. I made friends, I had started
Speaker 2: dating my now husband, David. I had this full life,
Speaker 2: but I still had this unresolved relationship with my very
Speaker 2: sick body. And I had a semester where I could
Speaker 2: do an independent study, and so I developed my own curriculum,
Speaker 2: and the title of my independent study was Disability and Grief.
Speaker 2: And it's interesting looking back at that, because it's clear
Speaker 2: that there was part of me that was wanting to
Speaker 2: wrestle with disability, because why would I have created this
Speaker 2: independent study and this reading list for myself? But I
Speaker 2: made myself a reading list of ability scholars and disability
Speaker 2: thinkers and memoirists and philosophers, and then I spent a
Speaker 2: semester reading them. And the first book I read was
Speaker 2: a book called Minority Body. And at the beginning of
Speaker 2: the book, doctor Barnes Elizabeth says that disability in itself
Speaker 2: is not necessarily worse than not being disabled, that it's
Speaker 2: the mere difference instead of a bad difference, and that
Speaker 2: being disabled is a way of having a minority body.
Speaker 2: Like there's the majority of the way bodies function, and
Speaker 2: then there's the minority of the way, and disability is
Speaker 2: the minority way, and that is not a value judgment,
Speaker 2: and something about the way my brain works. It's like
Speaker 2: this logic, this philosophy. I was just like, oh, okay,
Speaker 2: becoming sick wasn't when my body or wasn't like it
Speaker 2: worked and stopped working. But my body went from this
Speaker 2: one way of being and now it is this way
Speaker 2: and it's up to me to decide the meaning behind that.
Speaker 2: It isn't an inherent loss. And then what happened after
Speaker 2: I read Elizabeth's book is I read a couple dozen
Speaker 2: other books by disabled authors, and I read poetry and
Speaker 2: memoir I read like Ronda Olkin's instruction on how to
Speaker 2: teach disabled social work. You know, I read this breath
Speaker 2: of work by disabled writers, and while I decided to
Speaker 2: identify as disabled because I wanted to be one of
Speaker 2: these people, like I was reading the most brilliant and
Speaker 2: creative revolutionaries. It felt like there was this group of
Speaker 2: people who were saying the way that you were before
Speaker 2: when you thought that a good enough life was up
Speaker 2: to you, when you thought it was just a matter
Speaker 2: of working harder, that is a message from the world,
Speaker 2: and that disability is a counter argument. It's a way
Speaker 2: of saying everything we believe about what matters, or about
Speaker 2: what we should strive for, or about what we're capable of,
Speaker 2: all of that may be wrong, and let's consider a
Speaker 2: different perspective. And I just thought, like, I want to
Speaker 2: be one of you. And so it felt like an honor.
Speaker 2: It felt like I had transitioned into a disabled body
Speaker 2: without realizing it, and that by acknowledging that identity, I
Speaker 2: got to be part of the greatest group of people
Speaker 2: I had ever been introduced to.
Speaker 1: Wow, you're right about the fact that this was the
Speaker 1: first time that you considered the idea that quote. If
Speaker 1: like it's harder for a disabled person, we should consider
Speaker 1: the possibility that it's not our body or minds that
Speaker 1: are to blame, but the social structures that we navigate
Speaker 1: with those bodies and minds. And one insight that was
Speaker 1: so thought provoking is those who are not disabled don't
Speaker 1: get to define the disabled experience through their vantage points.
Speaker 1: Since goodness and wellness and worthiness is all just a
Speaker 1: state of mind for any given person.
Speaker 2: That's exactly it. I get to decide what my life
Speaker 2: means now, and if you're sorry for me like that pity.
Speaker 2: I really think pity is like just bumping right up
Speaker 2: against disdain. I think pity is so dangerous. It's not empathy.
Speaker 2: There's such a difference, and I think we need to
Speaker 2: be so careful about pitying another person's life based on
Speaker 2: our own assumptions of what it would be like. And
Speaker 2: I could decide I like my life less now like
Speaker 2: I get to decide it. It doesn't mean every disabled
Speaker 2: person has to be happy with their identity, but it
Speaker 2: is up to the disabled person to decide. It is
Speaker 2: not up to another person to say it is worse
Speaker 2: to be disabled. And I'm so careful about this because
Speaker 2: it's not a pressure for other people to feel this way.
Speaker 2: And it's not overly trite, and it's not silver lining anything,
Speaker 2: but I deeply mean that I would choose this version
Speaker 2: of my life. That I like my life as a
Speaker 2: disabled person far more than I liked my life before.
Speaker 1: We'll be back in a moment with a slight change
Speaker 1: of plans. As Jessica began to embrace her disability, she
Speaker 1: no longer saw herself as someone who might one day recover. Instead,
Speaker 1: she saw herself as someone whose body had changed and
Speaker 1: who was now a member of a vibrant, powerful community.
Speaker 1: And as Jessica began reimagining her life, she also began
Speaker 1: to reconsider her thoughts on motherhood. She reflects on this
Speaker 1: shift in her new book Unfit Parent, A Disabled Mother
Speaker 1: Challenges and Inaccessible World.
Speaker 2: So when I was in my twenties, people would always
Speaker 2: talk about kids and who was having kids and who wasn't.
Speaker 2: I always said I didn't want to, but I said
Speaker 2: it was because I didn't want kids to cremate my style.
Speaker 2: I was like, well, if I have kids, I won't
Speaker 2: be able to travel like this. But the truth was,
Speaker 2: I knew the way I talked to myself, and I
Speaker 2: knew the way I treated myself, and I was positive
Speaker 2: that if I had a kid, I would treat them
Speaker 2: that way and that I would destroy them. I just
Speaker 2: thought I could never I could never do this to
Speaker 2: a child. I could never subject a child to me.
Speaker 2: And then when I identified as disabled and sort of reckoned
Speaker 2: with that, I started to like myself for the first
Speaker 2: time in my life.
Speaker 1: I'm assuming that wasn't a shift that happened for you overnight.
Speaker 1: What unlocked this newfound compassion for yourself? What beliefs did
Speaker 1: you have to revisit and reconstruct in order to start
Speaker 1: to like yourself?
Speaker 2: I think it was control. It has to be, because
Speaker 2: for all those years I thought that it was in
Speaker 2: my control to be perfect, or to form a perfect life,
Speaker 2: or to be good enough. And becoming disabled where so
Speaker 2: little is in my control. Now I cannot deceive myself
Speaker 2: that perfections attainable, or that like the ideal life is
Speaker 2: like close close at hand. It's you know, my life
Speaker 2: is so different from what I had always pictured as
Speaker 2: being perfect. I never stopped moving before I got sick,
Speaker 2: and then I almost never am moving now. I mean,
Speaker 2: I have had to get used to myself. I'm always
Speaker 2: just stuck here in me, and like the force proximity
Speaker 2: to my own brain, I had to make peace with
Speaker 2: it and then eventually like it because I can't go anywhere.
Speaker 1: You and your husband ultimately decided that you would like
Speaker 1: to become parents. Do you remember having any specific concerns
Speaker 1: entering parenthood.
Speaker 2: Well, so, the way that David and I became parents,
Speaker 2: we were foster parents, and we were not thinking we
Speaker 2: would have a newborn, So my consideration it was a
Speaker 2: little different. Our assumption is that we would have a
Speaker 2: preteen or a teenager, and then we got our license
Speaker 2: up through aged twelve, so then we thought we'd probably
Speaker 2: be taking care of a preteen and only for a
Speaker 2: temporary amount of time. And I had this moral conviction
Speaker 2: that we needed to give our time and our space
Speaker 2: to kids who needed a place to live. I just thought,
Speaker 2: it is indefensible if we have a second bedroom and
Speaker 2: I have the time and the capacity, that we don't
Speaker 2: leave it open for a person who would need somewhere
Speaker 2: to stay. And so because of my conviction about that,
Speaker 2: I didn't have a lot of reservations.
Speaker 1: Now, your foster parenting journey ended up being quite different
Speaker 1: than what you expected, because you did not foster a teenager.
Speaker 1: You fostered a newborn. So tell me about what that
Speaker 1: experience was like.
Speaker 2: We got a call at nine pm that there was
Speaker 2: a newborn who needed a place for a few weeks,
Speaker 2: and they asked if we could take her. We were
Speaker 2: not expecting a newborn, but I have experience with babies
Speaker 2: because I'm the oldest of many cousins and the oldest sibling,
Speaker 2: and I really like babies, and so we said yeah.
Speaker 2: And that's how I became a mom was twelve hours notice.
Speaker 2: We didn't have baby supplies. I posted on the neighborhood
Speaker 2: next door group and said, I unexpectedly have a newborn
Speaker 2: if anyone has any extra supplies, And then people just
Speaker 2: started dumping stuff off on our porch and we got
Speaker 2: everything we needed within a day. And I think becoming
Speaker 2: the parent of a newborn as a surprise is something
Speaker 2: that saved me from parts of parenting that it would
Speaker 2: have been very hard for me. I think I would
Speaker 2: have worried so much. I would have worried about my disability.
Speaker 2: I would have worried about the practical parts I would
Speaker 2: have fallen into. Probably at that point, a lot more
Speaker 2: of the perfectionism ideas. But because there was no notice,
Speaker 2: there was no time to try to do it perfectly.
Speaker 2: I was just with a friend yesterday and I pulled
Speaker 2: up a photo on my phone of getting home from
Speaker 2: the hospital with my daughter, and she was on my chest,
Speaker 2: and then the computer was on my stomach, and on
Speaker 2: my screen is a Google search how do you take
Speaker 2: care of a newborn?
Speaker 1: Wow, that's amazing. You've talked about how when you live
Speaker 1: with the disability there is an added pressure to prove
Speaker 1: your worthiness as a parent. Tell me more about that.
Speaker 2: You know. When I interviewed people, particularly disabled women who
Speaker 2: gave birth, all of them had had social services called
Speaker 2: on them in the hospital. There's one woman I spoke
Speaker 2: to who cried the first time she tried the breastfeed
Speaker 2: in the hospital. She's blind, and her nurse called CPS
Speaker 2: and said that she was worried that this mom wasn't
Speaker 2: equipped to parent because she cried. And it's like these
Speaker 2: standards that disabled people are held to are different and
Speaker 2: higher than the standards that non disabled people are held to.
Speaker 2: When I am out by myself, I'm largely invisible as
Speaker 2: a person in a wheelchair. When I'm out with my kids.
Speaker 2: I'll usually have one kid on my lap and holding
Speaker 2: my other kid's hand. It is like we are a spectacle.
Speaker 2: And I'm very aware of the stairs, and I'm very
Speaker 2: careful to always be performing parenthood in those moments because
Speaker 2: the risk to disable people of having a concerned bystander
Speaker 2: is real. That disabled people lose custody of their kids
Speaker 2: at just an exceedingly high rate, And so I feel
Speaker 2: the eyes on me, and I kind of perform to it.
Speaker 1: What does that performance look like?
Speaker 2: Always smiling, always being super attentive and engaged. I would
Speaker 2: never dare look bored or annoyed with my kids in public,
Speaker 2: and obviously being bored with your kids is a fairly
Speaker 2: normal behavior, but I would never do it in public.
Speaker 1: Oh my god, I'm so incensed hearing that you have
Speaker 1: to carry that extra burden that you're not afforded the
Speaker 1: right that every non disabled parent has when it comes
Speaker 1: to being impatient or losing your temper or being unbelievably
Speaker 1: bored in the presence of your kids. One of the
Speaker 1: most uplifting parts of your beautifully written book is that
Speaker 1: you don't simply propose that disabled parents are great parents.
Speaker 1: You actually argue that in many ways, they have built
Speaker 1: mindsets over time that actually make them better prepared for parenting,
Speaker 1: like more capable to be exceptional parents. I know that
Speaker 1: these reflections took time to build, but tell me more
Speaker 1: about that.
Speaker 2: I mean, there's so many ways of looking at it,
Speaker 2: but one is that particularly parenting, like highly intensive parenting,
Speaker 2: parenting where we're sort of told that if we do
Speaker 2: things well enough, or say things just the right way
Speaker 2: to our kids, or handle screen time in just the
Speaker 2: right way or the right schools, that we can somehow
Speaker 2: insulate our kids from suffering or insulate ourselves from watching
Speaker 2: our kids suffer. And disability is this like off ramp
Speaker 2: from that In my experience, like people think being disabled
Speaker 2: was kind of worst case scenario, that we are living
Speaker 2: a life that no one wants to live. And because
Speaker 2: of that, because we've been rejected, we get to say, okay,
Speaker 2: then what do we value? And so I feel like
Speaker 2: there's this entirely different value system that disability has brought
Speaker 2: my parenting. I did an interview recently and she was asking,
Speaker 2: how do you decide which activities to do every weekend?
Speaker 2: Like how do you keep the weekends from being too
Speaker 2: two packed? And I was like, oh, we do nothing.
Speaker 2: I mean, yeah, last weekend. It was funny. David and
Speaker 2: I on Saturday, we're like, oh, it's been such a
Speaker 2: busy weekend, and then we reviewed what we had done.
Speaker 2: The only thing we did was meet a friend at
Speaker 2: a park two blocks away for an hour and a half.
Speaker 2: And for us that was like, we had a huge weekend.
Speaker 2: We don't sign our kids up for anything. They don't
Speaker 2: want to be signed up. We think everyone in this
Speaker 2: house needs to rest our. Expectations of performance is really low.
Speaker 2: And I think I have brought that mindset into parenting
Speaker 2: because I was like, I had to let go of
Speaker 2: it in my own life first, and I think there's
Speaker 2: real freedom there. So I think that's that's one way
Speaker 2: that we're equipped. But then the other is that there's
Speaker 2: this very like practical thing is that a kid's body
Speaker 2: and mind and a baby's body and mind is just
Speaker 2: like so needy and so unpredictable, and a disabled body
Speaker 2: and mind is really needy and unpredictable. And I think
Speaker 2: there's just like really practical overlap and skills that the
Speaker 2: skill set I need to take care of myself and
Speaker 2: to survive in a very inaccessible world are a lot
Speaker 2: of the same skills I need to take care of
Speaker 2: my kids and to help them be equipped for the world.
Speaker 2: And so I just see, like it's almost like I
Speaker 2: was training to parent when I became disabled.
Speaker 1: Yeah, you've spoken about the fact that your disability has
Speaker 1: helped you make peace with uncertainty.
Speaker 2: Yeah. I mean, I think this micromanaging of our kids
Speaker 2: and of our lives. I believe that it's coming from
Speaker 2: the way we all are so scared of death and
Speaker 2: so scared of the people we love dying, which is
Speaker 2: such a normal thing to be afraid of, and it's
Speaker 2: like we will do anything to avoid the fact that
Speaker 2: the inevitable outcome of every one of our lives is death,
Speaker 2: and that the thing that is true for each of
Speaker 2: us is that we will suffer. And then when you
Speaker 2: become a parent, the thing that's true is that my
Speaker 2: children will suffer in this world. That like I want
Speaker 2: them to be okay, and they will not be okay forever,
Speaker 2: and like there's nothing I could do to change that. Yeah,
Speaker 2: And I think looking straight at that is so intolerable
Speaker 2: that we panic and do a thousand things to try
Speaker 2: to protect them and protect us. And I think for me,
Speaker 2: the way my body suffers and the way I felt
Speaker 2: so close to not making it, and the way I've
Speaker 2: had to sort of confront my own precarity is that
Speaker 2: it's painful, but it is a thing I can tolerate
Speaker 2: that my kids will suffer. I mean, it hurts so much,
Speaker 2: but I god, I mean I can barely tolerate it.
Speaker 2: But I can't change it. I guess that's it. I
Speaker 2: just can't change it, and I have to live with it,
Speaker 2: and I have to live the days with them with
Speaker 2: the uncertainty that is part of being alive in these bodies.
Speaker 1: Yeah, I kind of fascinating. Some of the studies you
Speaker 1: cite in your book show that people with disabilities adapt
Speaker 1: more quickly to things like cancer. Can you share a
Speaker 1: little bit more about that.
Speaker 2: We've already had to say, wait, this isn't the way
Speaker 2: it was supposed to be, and then dealt with that.
Speaker 2: I think this like jarring change of like this isn't
Speaker 2: the way life should be. I think that often hits
Speaker 2: less hard for someone who has lived with a disabled
Speaker 2: body or mind, and I it's just so much as expectation.
Speaker 2: I think, like the conclusion I've come to is that
Speaker 2: we are very bad at knowing what will make us happy.
Speaker 2: We're very bad at making ourselves happy. And that's so
Speaker 2: much of like how we suffer from changes because we
Speaker 2: think it's not what life is supposed to look like
Speaker 2: or what we are supposed to be like. And what
Speaker 2: I've learned is we are just no good at knowing
Speaker 2: what we can endure and what will change us and
Speaker 2: who we will be on the other side, we are
Speaker 2: so bad at predicting our own happiness.
Speaker 1: Yes, we forget that we ourselves will be altered by
Speaker 1: the change. The change will influence our abilities and perspectives
Speaker 1: and values and ways that are hard to predict. And
Speaker 1: I just feel like there's an ounce of hope for
Speaker 1: all of us who feel just totally overwhelmed at the
Speaker 1: outset of change, that like, there's another version of Maya
Speaker 1: waiting for me on the other side of change, that
Speaker 1: there was another version of Jessica waiting for you that
Speaker 1: was going to be able to tackle this.
Speaker 2: I really love that, and it touches on something I
Speaker 2: talk about in the book is that people imagine disabled
Speaker 2: parenting as their current version of parenting minus a thing
Speaker 2: like how would I take care of this baby? The
Speaker 2: way I do now, but then minus my vision if
Speaker 2: I were blind, But like there's a different version of
Speaker 2: you that would do it, like a it's a new thing.
Speaker 2: It's not you. Yeah, it's not the current version, Jessica.
Speaker 1: We started off our conversation with you reflecting on the
Speaker 1: fact that for so much of your life you were
Speaker 1: chasing goodness, but that feeling was always so elusive, like
Speaker 1: you never quite felt like you never quite felt like
Speaker 1: you could get there. And so now, reflecting back as
Speaker 1: someone who's gone through everything you've gone through, who has
Speaker 1: taken on new identities like being a disabled person and
Speaker 1: being a mother, how do you feel about yourself now?
Speaker 2: I don't feel perfect, and I God, I hope I
Speaker 2: continue to change and learn, but I I do just
Speaker 2: I like who I am. I have a set of
Speaker 2: characteristics and I can see them, and I live inside myself.
Speaker 2: I think I'm kind. I like the way I think
Speaker 2: I am an excellent mother, and I am a open
Speaker 2: and patient spouse, and I my own head and my
Speaker 2: own emotions are a place that I feel really lucky
Speaker 2: and thankful to live with and to be in. Yeah,
Speaker 2: it's a like I feel so wildly lucky to like
Speaker 2: myself because I didn't for so long. But when I
Speaker 2: am just with myself and I'm with my own thoughts
Speaker 2: and I'm feeling my feelings or analyzing something or working
Speaker 2: through something or figuring something out, it is not always pleasant.
Speaker 2: There's plenty of hard stuff, there's pain, there's suffering, but
Speaker 2: I am glad to be with me doing it.
Speaker 1: Hey, thanks so much for listening. If you enjoyed this episode,
Speaker 1: don't forget to follow a Slight Change of Plans wherever
Speaker 1: you get your podcasts. Next time I talk with author
Speaker 1: and podcast host and a sale about the art of
Speaker 1: a hard conversation. We want to say something that's going
Speaker 1: to make it feel tolerable and sometimes dig things just
Speaker 1: need a little bit of air. That's next week on
Speaker 1: a Slight Change of Plans see then A Slight Change
Speaker 1: of Plans is created in an executive produce by me
Speaker 1: Maya Shunker. The Slight Changed family includes our showrunner Tyler Green,
Speaker 1: our senior editor Kate Parkinson Morgan, our producers Britney Cronin
Speaker 1: and Megan Lubn, and our sound engineer Erica Huang. Louis
Speaker 1: Scara wrote our delightful theme song, and Ginger Smith helped
Speaker 1: arrange the vocals. A Slight Change of Plans is a
Speaker 1: production of Pushkin Industries, so big thanks to everyone there,
Speaker 1: and of course a very special thanks to Jimmy Lee.
Speaker 1: You can follow a Slight Change of Plans on Instagram
Speaker 1: at doctor Maya Schunker. See you next week.