August 4, 2025 • 42 mins
Jessica Slice spent years working towards the day when she might actually like herself. If she just tried a little harder, achieved a little more, ate a little healthier, she thought she could earn her own self-respect. But after experiencing a sudden health crisis, Jessica was forced to put all that work on indefinite pause, and to remake her relationship with herself. On today’s show: who we can become when we let go of society’s standards of goodness.
If you’re interested in learning more about the books that shaped Jessica’s thinking on difference, disability and mental health, check out the list below:
- “The Minority Body: A Theory of Disability” by Elizabeth Barnes
- “Brilliant Imperfection: Grappling with Cure” by Eli Clare
- “Exile and Pride” by Eli Clare
- “Feminist, Queer, Crip” by Alison Kafer
- “The Disabled God: Toward a Liberatory Theology of Disability” by Nancy Eiesland
- “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick” Maya Dusenbery
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:14):
Pushkin.
Speaker 2 (00:30):
The way I treated myself inside was like goodness was
just around the corner. If I could make a few
more right decisions, or work a little bit harder, or
do things a little bit better, then my life would
be good or I would be good like I didn't
think I need to like myself for who I am.
I thought I will eventually earn the reward of my
(00:50):
own respect.
Speaker 1 (00:52):
Jessica Slice spent years waiting for that elusive day when
she might actually like herself.
Speaker 2 (00:58):
For all those years, I thought that it was in
my control to be perfect, or to form a perfect life,
or to be good enough. And that is a message
from the world, and disability is a counter argument. It's
a way of saying everything we believe about what matters,
(01:20):
or about what we should strive for, or about what
we're capable of, like all of that may be wrong.
Speaker 1 (01:27):
On today's show, when we let go of society standards
of goodness, who can we become? I'm maya Schunker, a
scientist who studies human behavior. And this is a slight
change of plans, a show about who we are and
who we become in the face of a big change.
(01:55):
Jessica Slice is an author who writes about living with disability.
She's written multiple books and has been published in The
New York Times, The Washington Post, The Atlantic, and The Guardian.
Jessica and I began our conversation by talking about what
she was like in her early twenties before she became disabled.
Speaker 2 (02:15):
I was a very high achiever. I was relentless in
my striving. I started practicing real estate at twenty five
and dove into that so thoroughly that within a year
I had started a company with some other women. I
was named one of the best realtors in the United States.
(02:35):
Oh my god, Okay, yeah, it's so bizarre. And I
was married to a high school sweetheart, I owned a company,
was earning more money than anyone should in their twenties.
But the thing that was really true about that time
is that I was so hard on myself. Like the
way I treated myself inside was like goodness was just
(03:00):
around the corner. If I could make a few more
right decisions, or work a little bit harder, or do
things a little bit better, then my life would be good,
or I would be good. And because that's not possible,
because we can't actually will power ourselves into goodness, It
made me just sort of hate myself, and I had
(03:22):
this corrosive shame. I couldn't have identified it as shame,
but I had this suspicion that I was so bad,
and then the thing I was doing was trying so
so hard to be good and to have a good life.
Speaker 1 (03:40):
Was that just a natural proclivity, natural disposition, or do
you think there was something in the way that you
grew up or some experience you had that gave rise
to this concern that you were bad in some way.
Speaker 2 (03:57):
I experienced a lot of loss in my childhood. I
had a sister die, I had friends die. I had
a kid in my second grade class die, and then
one in my fourth grade class, an uncle and a
grandfather and a cousin all within a few years. I
went to so many funerals before I was even a preteen,
including that of my younger sister, and I think I
(04:21):
had to come up with an explanation. And so it
was like, these are bad things happening that must somehow
be my fault, because little kid logic is always it
must somehow be my fault, and so the only thing
to do is to be better, to be a good kid,
to be good, and so then I was just completely
devoted to being good and that kind of propelled me through.
(04:44):
You know, I was still just being good in my twenties.
But the thing I did think very concretely was I'm
going to figure this out. Like I'm still dissatisfied. I'm
still not there. I still have this emptiness, but it
was like there was always this thought that there was
(05:06):
a way to get there and.
Speaker 1 (05:10):
This elusive feeling of goodness. How would you have defined
it at the time, and what would it have felt
like to feel good?
Speaker 2 (05:19):
I think I would have liked myself. I would have said,
when I'm a better improved person, I like myself. Like
I didn't think I need to like myself for who
I am. I thought I will eventually earn the reward
of my own respect.
Speaker 1 (05:35):
Let's fast forward to twenty eleven. You were in your
late twenties and you and your husband at the time
bought tickets to go on this epic cruise. Tell me
about that trip and what your mindset was like going
into it.
Speaker 2 (05:50):
Gosh, we built this trip up so much. It was
this luxury cruise ship that was going to Turkey and
Greece and Italy. We planned this for a whole year,
like every moment of it was going to be perfect,
and it's the perfect encapsulation of how I was living then,
which is there there will be a time where life
(06:11):
is finally what I thought it could be or what
I could be. And this trip kind of held all
this expectation in it. I mean I thought of what
I was going to wear every day exactly, and which
restaurants we would go to and which cities and what
hikes we would take. It was like nothing has been
planned more than that trip was.
Speaker 1 (06:31):
And so on the tenth day of your trip, you
were out on a long hike and you started to
experience some unusual symptoms. So what happened?
Speaker 2 (06:43):
So we were about a mile from the end, and
I realized that we didn't have enough water, and I thought, Okay, well,
this is too bad. I'm going to really need to
rehydrate when we get to the village. But it felt
like it would be a minor hiccup. But then we
which it sounds very Greek mythy, but we encountered a
pack of wild dogs blocking the path and they were
(07:08):
like bare their teeth, and we had to add all
this distance onto the hike to get around this pack
of dogs, and adding that distance onto the hike meant
that by the time we got to the village where
I was going to get some food and water and recover,
I was vomiting and felt really confused. I felt really
(07:29):
out of it. I had this sense that I was
sort of separate from the world. And then I just
rested and I thought, Okay, well, i'll rest today, I'll
be back tomorrow. And then I woke up the next
day and it was like I had traded my body
for a different body. I tried to get down the
hall to the bathroom and could barely walk. The room
(07:53):
was like spinning and like it was black around the
outside of my vision. I just felt I felt so weak,
and then I woke up every day for the rest
of the trip almost entirely bedbound. I would try to
do something and then just have to go right back
to bed. Made at home, went to a doctor. All
(08:16):
my blood tests were normal, and I felt no better,
and I kept thinking every morning that I was going
to wake up and feel totally fine, and then at
some point shortly after waking up, I would encounter the
limits of my body and end up back in bed again.
Speaker 1 (08:36):
You ended up seeing various doctors to try to unlock
this puzzle of what was going on in your body.
What did doctors tell you at the time. What did
they say was causing your symptoms?
Speaker 2 (08:48):
At first, they said it was just my body getting
over having heat exhaustion and electrolyte imbalance. And then when
it lasted and lasted and lasted, the nausea and the
dizziness and the fatigue and this sense that my vision
was leaving, they said that I was just thinking too
much about my body, and that I was too focused
(09:09):
on my health, and that it was probably anxiety. And
you know, it wasn't too long before I started to
have other symptoms. My skin sort of changed color. I
started to get yellowish the bones, and my feet started
to break, like I would just walk around the house
and my bones would break. I had little hairs growing
(09:30):
all over my body. I was losing so much weight,
and so I was watching my body change. And then
I was told that, no, nothing is happening. You're just
too worried. You're just thinking too much about it.
Speaker 1 (09:43):
Wow. You know, there are so many parts of your
story that are so exceptional. This is one that I
feel is so universal and so relatable to so many people,
especially women who feel like their concerns about their bodies
aren't being taken seriously. Yeah, what did it feel like, Jessica?
(10:04):
To feel your body changing in these ways that no
one around you could explain that medical professionals were simply dismissing.
Speaker 2 (10:16):
I felt like they were probably right because I had
such a tendency to blame myself and to demand perfection
from myself that I assumed that I was somehow doing
something wrong. And so I made this massive spreadsheet of
symptom on set date and what had happened right before it,
(10:38):
and what supplements I had tried, and what new diets
I had tried. You know, I had cut out gluten
and then reintroduced you know, I tried everything, and I
just kind of thought, well, I could figure this out.
I also just felt terror because I was experiencing something
very real and being told that it wasn't real. But
(10:59):
I was living it inside my own body, and so
there was just no way to reconcile it. And I
eventually decided that I must be crazy, that I had
tricked myself into thinking I got sick on that hike
and I didn't.
Speaker 1 (11:17):
I mean, you talked about the fact that you were
always so self critical, right, like always doubting yourself. What
did this do to the trust that you had in
your ability to even live in your own body and
understand what was happening to it?
Speaker 2 (11:32):
I mean, it was gone. It was totally gone. It
was such a foundational breakdown of identity because I had
all these ways that I had constructed a really shiny life,
and all of these ways that I thought I was
about to have a good life or about to be
(11:52):
good enough, and then those were all vanishing. You know.
I wasn't able to work anymore. I was living alone,
my relationship had ended. I was in a one bedroom
apartment just trying not to die. Like every day it
was like, how will I get food today? How will
I get the things I need to do to stay alive.
I felt like I was constantly running a fever. I
(12:15):
was very underweight, even though I was always trying to
eat more, but I was constantly nauseated. I felt like
I was going to faint almost all day. Every day
when I did almost anything, my vision would start to
black out and I would start to lose consciousness. To
get food. If I went to the grocery store, I
actually had to scoot just on my butt on the
(12:36):
floor through the line at the grocery store. I couldn't
make it through the line. I couldn't get gas in
my car. I found this guy at a gas station
five minutes away, and I got his phone number, and
if I called him, he would put gas in my car.
You know, my entire day was the series of problem
solves because of this intense level of dizziness and nausea
(12:57):
and weakness and pain. I remember I tried to go
on a walk at that time because everyone said I
was fine, and then I started to black out and
I lay down on the grass and I thought, I
don't know what's going to happen other than that I'm
going to die because I I don't know how to
(13:17):
get help. I don't know what's wrong with me. I
don't know how I'm doing this to myself, Like how
have I convinced myself that this is happening if it isn't,
And how do I get out of here? Yeah?
Speaker 1 (13:30):
How long were you in this torture US state, Jessica,
where you were in limbo and you were being made
to question your own relationship with reality.
Speaker 2 (13:40):
It was two years, and then it was August of
twenty thirteen. I went to a psychiatrist and I said,
I don't know what's wrong. I'm desperate, but I need
some sort of medication that will fix this. And I
described what the last couple of years had been like,
(14:02):
and it's just this act of profound grace that he
listened really intently, and he noticed that the times I
felt the worst was when I was standing upright and
standing still. And he said, I don't think you have
(14:22):
a psychological condition. I think you have a neurological condition
with cardiac implications, where your body can't handle being upright,
and he referred me to a cardiologist for testing. I
remember I felt really happy, but also really scared that
someone would tell me that he was wrong, or that
(14:43):
it wasn't real. I was so disconnected from my own
experience and from any belief in myself, you know, the
slightest breath could like blow me away from this new
sense of hope or this new sense that maybe I
wasn't completely delusional about my own physical experience. And then
there was also the logistics. So the doctor he referred
(15:06):
me to was in Charlotte, which was two hours away,
and I had to figure out how to get there.
I couldn't drive, you know. Every time I would try
to drive, I would start to faint. And so this
friend from college was passing through town and I asked
him if I could pay him to take me to
this cardiologist in Charlotte, and he did. I was earning
(15:28):
no income and my insurance didn't cover the doctor who
could do the test. So I remember I called my
parents and I asked them if they could lend me
the three thousand dollars for the test, and they did so.
I was also just still trying to survive. My whole
life was a logistic puzzle of survival.
Speaker 1 (15:47):
Eventually, you did receive a diagnosis.
Speaker 2 (15:52):
So I had the testing done. But also around that time,
my younger sister had developed the same symptoms, and so
I got the diagnosis of pots postur orthostatic doctor cardio syndrome,
which basically means my heart has trouble pumping enough blood
and oxygen to my brain if I'm upright, and it
comes with a bunch of other symptoms. And because she
(16:14):
developed the same syndrome, they sent us to a geneticist
where we found out we also had a connective tissue
disorder called EDS, which leads to POTS in some people.
Speaker 1 (16:27):
And what were the implications of the EDS diagnosis, Like,
understanding that there was this underlying genetic syndrome.
Speaker 2 (16:35):
It meant that it was very unlikely that we would
ever not have POTS or ever be healthy again. So
what had happened was when I went on that hike,
the heat exhaustion was a physical stressor that activated this
neurological condition that activated my body's difficulty with controlling heart
(16:58):
rate and blood pressure and digestion. And I had spent
so much time thinking about that hike, thinking how would
my life be different if I didn't go on this
one hike? But learning that I had this underlying genetic condition,
I now know that it was just it was ready
to be turned on. There was going to be some
physical stressor at some point that was going to activate it.
(17:20):
It's not all the fault of these wild dogs in Santorini.
There was going to be something that did it.
Speaker 1 (17:27):
You know, as all of this was unfolding on a
personal front, when it came to thinking about your self identity,
you insisted on identifying as someone who was sick versus
as someone who was disabled. Can you tell me a
bit more about that choice.
Speaker 2 (17:44):
I didn't even consider that I was disabled. I thought
I got sick and stayed sick, like I had this
body that was operating correctly, and then it stopped operating correctly,
and that's what illness is. I don't even think I
thought about what being disabled meant. You know, my sister
that had died when I was younger was disabled. She
(18:06):
had seizures, and she had some paralysis and hearing life
and had a you know, sort of profound disability. And
I never even considered the word for myself, which was
funny because, well, I think it's mostly internalizedableism. Because I
had a disabled parking placard, I was at that point
receiving disability insurance income. I had the word disability kind
(18:28):
of hovering around me, but I just always thought it
was like an incidental term or a practical term, and
not one that actually applied to me or meant anything.
Speaker 1 (18:41):
Tell me then, about transitioning from identifying as someone who
was sick to someone who is disabled. What led to
that internal evolution?
Speaker 2 (18:53):
After the diagnosis, I spent a lot of time trying
to not be sick. Still, even knowing that it was
unlikely to be successful, I tried anything a doctor said
because I thought I could beat it. I was still
a striver, you know, I was still trying to be sick.
And then I was in graduate school for social work.
(19:14):
At that point in my life, it was twenty seventeen.
I had been sick for what I would have said,
sick for six years, and I had started to craft
a new life for myself as a sick person. You know.
I had moved to California, where the temperature was easier
for me to manage. I made friends, I had started
dating my now husband, David. I had this full life,
(19:37):
but I still had this unresolved relationship with my very
sick body. And I had a semester where I could
do an independent study, and so I developed my own curriculum,
and the title of my independent study was Disability and Grief.
And it's interesting looking back at that, because it's clear
(19:57):
that there was part of me that was wanting to
wrestle with disability, because why would I have created this
independent study and this reading list for myself? But I
made myself a reading list of ability scholars and disability
thinkers and memoirists and philosophers, and then I spent a
semester reading them. And the first book I read was
(20:20):
a book called Minority Body. And at the beginning of
the book, doctor Barnes Elizabeth says that disability in itself
is not necessarily worse than not being disabled, that it's
the mere difference instead of a bad difference, and that
(20:43):
being disabled is a way of having a minority body.
Like there's the majority of the way bodies function, and
then there's the minority of the way, and disability is
the minority way, and that is not a value judgment,
and something about the way my brain works. It's like
this logic, this philosophy. I was just like, oh, okay,
(21:06):
becoming sick wasn't when my body or wasn't like it
worked and stopped working. But my body went from this
one way of being and now it is this way
and it's up to me to decide the meaning behind that.
It isn't an inherent loss. And then what happened after
(21:31):
I read Elizabeth's book is I read a couple dozen
other books by disabled authors, and I read poetry and
memoir I read like Ronda Olkin's instruction on how to
teach disabled social work. You know, I read this breath
of work by disabled writers, and while I decided to
identify as disabled because I wanted to be one of
(21:53):
these people, like I was reading the most brilliant and
creative revolutionaries. It felt like there was this group of
people who were saying the way that you were before
when you thought that a good enough life was up
to you, when you thought it was just a matter
(22:14):
of working harder, that is a message from the world,
and that disability is a counter argument. It's a way
of saying everything we believe about what matters, or about
what we should strive for, or about what we're capable of,
all of that may be wrong, and let's consider a
(22:35):
different perspective. And I just thought, like, I want to
be one of you. And so it felt like an honor.
It felt like I had transitioned into a disabled body
without realizing it, and that by acknowledging that identity, I
got to be part of the greatest group of people
I had ever been introduced to.
Speaker 1 (22:56):
Wow, you're right about the fact that this was the
first time that you considered the idea that quote. If
like it's harder for a disabled person, we should consider
the possibility that it's not our body or minds that
are to blame, but the social structures that we navigate
with those bodies and minds. And one insight that was
(23:17):
so thought provoking is those who are not disabled don't
get to define the disabled experience through their vantage points.
Since goodness and wellness and worthiness is all just a
state of mind for any given person.
Speaker 2 (23:33):
That's exactly it. I get to decide what my life
means now, and if you're sorry for me like that pity.
I really think pity is like just bumping right up
against disdain. I think pity is so dangerous. It's not empathy.
There's such a difference, and I think we need to
(23:55):
be so careful about pitying another person's life based on
our own assumptions of what it would be like. And
I could decide I like my life less now like
I get to decide it. It doesn't mean every disabled
person has to be happy with their identity, but it
is up to the disabled person to decide. It is
not up to another person to say it is worse
(24:16):
to be disabled. And I'm so careful about this because
it's not a pressure for other people to feel this way.
And it's not overly trite, and it's not silver lining anything,
but I deeply mean that I would choose this version
of my life. That I like my life as a
disabled person far more than I liked my life before.
Speaker 1 (24:44):
We'll be back in a moment with a slight change
of plans. As Jessica began to embrace her disability, she
(25:13):
no longer saw herself as someone who might one day recover. Instead,
she saw herself as someone whose body had changed and
who was now a member of a vibrant, powerful community.
And as Jessica began reimagining her life, she also began
to reconsider her thoughts on motherhood. She reflects on this
(25:34):
shift in her new book Unfit Parent, A Disabled Mother
Challenges and Inaccessible World.
Speaker 2 (25:42):
So when I was in my twenties, people would always
talk about kids and who was having kids and who wasn't.
I always said I didn't want to, but I said
it was because I didn't want kids to cremate my style.
I was like, well, if I have kids, I won't
be able to travel like this. But the truth was,
I knew the way I talked to myself, and I
(26:02):
knew the way I treated myself, and I was positive
that if I had a kid, I would treat them
that way and that I would destroy them. I just
thought I could never I could never do this to
a child. I could never subject a child to me.
And then when I identified as disabled and sort of reckoned
(26:24):
with that, I started to like myself for the first
time in my life.
Speaker 1 (26:31):
I'm assuming that wasn't a shift that happened for you overnight.
What unlocked this newfound compassion for yourself? What beliefs did
you have to revisit and reconstruct in order to start
to like yourself?
Speaker 2 (26:46):
I think it was control. It has to be, because
for all those years I thought that it was in
my control to be perfect, or to form a perfect life,
or to be good enough. And becoming disabled where so
little is in my control. Now I cannot deceive myself
that perfections attainable, or that like the ideal life is
(27:09):
like close close at hand. It's you know, my life
is so different from what I had always pictured as
being perfect. I never stopped moving before I got sick,
and then I almost never am moving now. I mean,
I have had to get used to myself. I'm always
(27:31):
just stuck here in me, and like the force proximity
to my own brain, I had to make peace with
it and then eventually like it because I can't go anywhere.
Speaker 1 (27:42):
You and your husband ultimately decided that you would like
to become parents. Do you remember having any specific concerns
entering parenthood.
Speaker 2 (27:52):
Well, so, the way that David and I became parents,
we were foster parents, and we were not thinking we
would have a newborn, So my consideration it was a
little different. Our assumption is that we would have a
preteen or a teenager, and then we got our license
up through aged twelve, so then we thought we'd probably
be taking care of a preteen and only for a
(28:13):
temporary amount of time. And I had this moral conviction
that we needed to give our time and our space
to kids who needed a place to live. I just thought,
it is indefensible if we have a second bedroom and
I have the time and the capacity, that we don't
leave it open for a person who would need somewhere
to stay. And so because of my conviction about that,
(28:36):
I didn't have a lot of reservations.
Speaker 1 (28:39):
Now, your foster parenting journey ended up being quite different
than what you expected, because you did not foster a teenager.
You fostered a newborn. So tell me about what that
experience was like.
Speaker 2 (28:50):
We got a call at nine pm that there was
a newborn who needed a place for a few weeks,
and they asked if we could take her. We were
not expecting a newborn, but I have experience with babies
because I'm the oldest of many cousins and the oldest sibling,
and I really like babies, and so we said yeah.
And that's how I became a mom was twelve hours notice.
(29:15):
We didn't have baby supplies. I posted on the neighborhood
next door group and said, I unexpectedly have a newborn
if anyone has any extra supplies, And then people just
started dumping stuff off on our porch and we got
everything we needed within a day. And I think becoming
the parent of a newborn as a surprise is something
(29:40):
that saved me from parts of parenting that it would
have been very hard for me. I think I would
have worried so much. I would have worried about my disability.
I would have worried about the practical parts I would
have fallen into. Probably at that point, a lot more
of the perfectionism ideas. But because there was no notice,
there was no time to try to do it perfectly.
(30:01):
I was just with a friend yesterday and I pulled
up a photo on my phone of getting home from
the hospital with my daughter, and she was on my chest,
and then the computer was on my stomach, and on
my screen is a Google search how do you take
care of a newborn?
Speaker 1 (30:17):
Wow, that's amazing. You've talked about how when you live
with the disability there is an added pressure to prove
your worthiness as a parent. Tell me more about that.
Speaker 2 (30:30):
You know. When I interviewed people, particularly disabled women who
gave birth, all of them had had social services called
on them in the hospital. There's one woman I spoke
to who cried the first time she tried the breastfeed
in the hospital. She's blind, and her nurse called CPS
and said that she was worried that this mom wasn't
equipped to parent because she cried. And it's like these
(30:55):
standards that disabled people are held to are different and
higher than the standards that non disabled people are held to.
When I am out by myself, I'm largely invisible as
a person in a wheelchair. When I'm out with my kids.
I'll usually have one kid on my lap and holding
my other kid's hand. It is like we are a spectacle.
(31:16):
And I'm very aware of the stairs, and I'm very
careful to always be performing parenthood in those moments because
the risk to disable people of having a concerned bystander
is real. That disabled people lose custody of their kids
at just an exceedingly high rate, And so I feel
the eyes on me, and I kind of perform to it.
Speaker 1 (31:40):
What does that performance look like?
Speaker 2 (31:44):
Always smiling, always being super attentive and engaged. I would
never dare look bored or annoyed with my kids in public,
and obviously being bored with your kids is a fairly
normal behavior, but I would never do it in public.
Speaker 1 (31:58):
Oh my god, I'm so incensed hearing that you have
to carry that extra burden that you're not afforded the
right that every non disabled parent has when it comes
to being impatient or losing your temper or being unbelievably
bored in the presence of your kids. One of the
most uplifting parts of your beautifully written book is that
(32:24):
you don't simply propose that disabled parents are great parents.
You actually argue that in many ways, they have built
mindsets over time that actually make them better prepared for parenting,
like more capable to be exceptional parents. I know that
these reflections took time to build, but tell me more
(32:45):
about that.
Speaker 2 (32:46):
I mean, there's so many ways of looking at it,
but one is that particularly parenting, like highly intensive parenting,
parenting where we're sort of told that if we do
things well enough, or say things just the right way
to our kids, or handle screen time in just the
right way or the right schools, that we can somehow
(33:08):
insulate our kids from suffering or insulate ourselves from watching
our kids suffer. And disability is this like off ramp
from that In my experience, like people think being disabled
was kind of worst case scenario, that we are living
a life that no one wants to live. And because
(33:28):
of that, because we've been rejected, we get to say, okay,
then what do we value? And so I feel like
there's this entirely different value system that disability has brought
my parenting. I did an interview recently and she was asking,
how do you decide which activities to do every weekend?
Like how do you keep the weekends from being too
two packed? And I was like, oh, we do nothing.
(33:53):
I mean, yeah, last weekend. It was funny. David and
I on Saturday, we're like, oh, it's been such a
busy weekend, and then we reviewed what we had done.
The only thing we did was meet a friend at
a park two blocks away for an hour and a half.
And for us that was like, we had a huge weekend.
We don't sign our kids up for anything. They don't
(34:15):
want to be signed up. We think everyone in this
house needs to rest our. Expectations of performance is really low.
And I think I have brought that mindset into parenting
because I was like, I had to let go of
it in my own life first, and I think there's
real freedom there. So I think that's that's one way
(34:36):
that we're equipped. But then the other is that there's
this very like practical thing is that a kid's body
and mind and a baby's body and mind is just
like so needy and so unpredictable, and a disabled body
and mind is really needy and unpredictable. And I think
there's just like really practical overlap and skills that the
(34:57):
skill set I need to take care of myself and
to survive in a very inaccessible world are a lot
of the same skills I need to take care of
my kids and to help them be equipped for the world.
And so I just see, like it's almost like I
was training to parent when I became disabled.
Speaker 1 (35:18):
Yeah, you've spoken about the fact that your disability has
helped you make peace with uncertainty.
Speaker 2 (35:27):
Yeah. I mean, I think this micromanaging of our kids
and of our lives. I believe that it's coming from
the way we all are so scared of death and
so scared of the people we love dying, which is
such a normal thing to be afraid of, and it's
(35:51):
like we will do anything to avoid the fact that
the inevitable outcome of every one of our lives is death,
and that the thing that is true for each of
us is that we will suffer. And then when you
become a parent, the thing that's true is that my
(36:13):
children will suffer in this world. That like I want
them to be okay, and they will not be okay forever,
and like there's nothing I could do to change that. Yeah,
And I think looking straight at that is so intolerable
(36:33):
that we panic and do a thousand things to try
to protect them and protect us. And I think for me,
the way my body suffers and the way I felt
so close to not making it, and the way I've
had to sort of confront my own precarity is that
(36:55):
it's painful, but it is a thing I can tolerate
that my kids will suffer. I mean, it hurts so much,
but I god, I mean I can barely tolerate it.
But I can't change it. I guess that's it. I
just can't change it, and I have to live with it,
and I have to live the days with them with
(37:16):
the uncertainty that is part of being alive in these bodies.
Speaker 1 (37:21):
Yeah, I kind of fascinating. Some of the studies you
cite in your book show that people with disabilities adapt
more quickly to things like cancer. Can you share a
little bit more about that.
Speaker 2 (37:33):
We've already had to say, wait, this isn't the way
it was supposed to be, and then dealt with that.
I think this like jarring change of like this isn't
the way life should be. I think that often hits
less hard for someone who has lived with a disabled
body or mind, and I it's just so much as expectation.
(37:55):
I think, like the conclusion I've come to is that
we are very bad at knowing what will make us happy.
We're very bad at making ourselves happy. And that's so
much of like how we suffer from changes because we
think it's not what life is supposed to look like
or what we are supposed to be like. And what
(38:15):
I've learned is we are just no good at knowing
what we can endure and what will change us and
who we will be on the other side, we are
so bad at predicting our own happiness.
Speaker 1 (38:26):
Yes, we forget that we ourselves will be altered by
the change. The change will influence our abilities and perspectives
and values and ways that are hard to predict. And
I just feel like there's an ounce of hope for
all of us who feel just totally overwhelmed at the
outset of change, that like, there's another version of Maya
waiting for me on the other side of change, that
(38:47):
there was another version of Jessica waiting for you that
was going to be able to tackle this.
Speaker 2 (38:53):
I really love that, and it touches on something I
talk about in the book is that people imagine disabled
parenting as their current version of parenting minus a thing
like how would I take care of this baby? The
way I do now, but then minus my vision if
I were blind, But like there's a different version of
(39:13):
you that would do it, like a it's a new thing.
It's not you. Yeah, it's not the current version, Jessica.
Speaker 1 (39:21):
We started off our conversation with you reflecting on the
fact that for so much of your life you were
chasing goodness, but that feeling was always so elusive, like
you never quite felt like you never quite felt like
you could get there. And so now, reflecting back as
someone who's gone through everything you've gone through, who has
(39:42):
taken on new identities like being a disabled person and
being a mother, how do you feel about yourself now?
Speaker 2 (39:51):
I don't feel perfect, and I God, I hope I
continue to change and learn, but I I do just
I like who I am. I have a set of
characteristics and I can see them, and I live inside myself.
(40:13):
I think I'm kind. I like the way I think
I am an excellent mother, and I am a open
and patient spouse, and I my own head and my
(40:34):
own emotions are a place that I feel really lucky
and thankful to live with and to be in. Yeah,
it's a like I feel so wildly lucky to like
myself because I didn't for so long. But when I
(40:56):
am just with myself and I'm with my own thoughts
and I'm feeling my feelings or analyzing something or working
through something or figuring something out, it is not always pleasant.
There's plenty of hard stuff, there's pain, there's suffering, but
I am glad to be with me doing it.
Speaker 1 (41:39):
Hey, thanks so much for listening. If you enjoyed this episode,
don't forget to follow a Slight Change of Plans wherever
you get your podcasts. Next time I talk with author
and podcast host and a sale about the art of
a hard conversation. We want to say something that's going
to make it feel tolerable and sometimes dig things just
(42:00):
need a little bit of air. That's next week on
a Slight Change of Plans see then A Slight Change
of Plans is created in an executive produce by me
Maya Shunker. The Slight Changed family includes our showrunner Tyler Green,
our senior editor Kate Parkinson Morgan, our producers Britney Cronin
(42:20):
and Megan Lubn, and our sound engineer Erica Huang. Louis
Scara wrote our delightful theme song, and Ginger Smith helped
arrange the vocals. A Slight Change of Plans is a
production of Pushkin Industries, so big thanks to everyone there,
and of course a very special thanks to Jimmy Lee.
You can follow a Slight Change of Plans on Instagram
(42:40):
at doctor Maya Schunker. See you next week.
Pushkin.
Speaker 2 (00:30):
The way I treated myself inside was like goodness was
just around the corner. If I could make a few
more right decisions, or work a little bit harder, or
do things a little bit better, then my life would
be good or I would be good like I didn't
think I need to like myself for who I am.
I thought I will eventually earn the reward of my
(00:50):
own respect.
Speaker 1 (00:52):
Jessica Slice spent years waiting for that elusive day when
she might actually like herself.
Speaker 2 (00:58):
For all those years, I thought that it was in
my control to be perfect, or to form a perfect life,
or to be good enough. And that is a message
from the world, and disability is a counter argument. It's
a way of saying everything we believe about what matters,
(01:20):
or about what we should strive for, or about what
we're capable of, like all of that may be wrong.
Speaker 1 (01:27):
On today's show, when we let go of society standards
of goodness, who can we become? I'm maya Schunker, a
scientist who studies human behavior. And this is a slight
change of plans, a show about who we are and
who we become in the face of a big change.
(01:55):
Jessica Slice is an author who writes about living with disability.
She's written multiple books and has been published in The
New York Times, The Washington Post, The Atlantic, and The Guardian.
Jessica and I began our conversation by talking about what
she was like in her early twenties before she became disabled.
Speaker 2 (02:15):
I was a very high achiever. I was relentless in
my striving. I started practicing real estate at twenty five
and dove into that so thoroughly that within a year
I had started a company with some other women. I
was named one of the best realtors in the United States.
(02:35):
Oh my god, Okay, yeah, it's so bizarre. And I
was married to a high school sweetheart, I owned a company,
was earning more money than anyone should in their twenties.
But the thing that was really true about that time
is that I was so hard on myself. Like the
way I treated myself inside was like goodness was just
(03:00):
around the corner. If I could make a few more
right decisions, or work a little bit harder, or do
things a little bit better, then my life would be good,
or I would be good. And because that's not possible,
because we can't actually will power ourselves into goodness, It
made me just sort of hate myself, and I had
(03:22):
this corrosive shame. I couldn't have identified it as shame,
but I had this suspicion that I was so bad,
and then the thing I was doing was trying so
so hard to be good and to have a good life.
Speaker 1 (03:40):
Was that just a natural proclivity, natural disposition, or do
you think there was something in the way that you
grew up or some experience you had that gave rise
to this concern that you were bad in some way.
Speaker 2 (03:57):
I experienced a lot of loss in my childhood. I
had a sister die, I had friends die. I had
a kid in my second grade class die, and then
one in my fourth grade class, an uncle and a
grandfather and a cousin all within a few years. I
went to so many funerals before I was even a preteen,
including that of my younger sister, and I think I
(04:21):
had to come up with an explanation. And so it
was like, these are bad things happening that must somehow
be my fault, because little kid logic is always it
must somehow be my fault, and so the only thing
to do is to be better, to be a good kid,
to be good, and so then I was just completely
devoted to being good and that kind of propelled me through.
(04:44):
You know, I was still just being good in my twenties.
But the thing I did think very concretely was I'm
going to figure this out. Like I'm still dissatisfied. I'm
still not there. I still have this emptiness, but it
was like there was always this thought that there was
(05:06):
a way to get there and.
Speaker 1 (05:10):
This elusive feeling of goodness. How would you have defined
it at the time, and what would it have felt
like to feel good?
Speaker 2 (05:19):
I think I would have liked myself. I would have said,
when I'm a better improved person, I like myself. Like
I didn't think I need to like myself for who
I am. I thought I will eventually earn the reward
of my own respect.
Speaker 1 (05:35):
Let's fast forward to twenty eleven. You were in your
late twenties and you and your husband at the time
bought tickets to go on this epic cruise. Tell me
about that trip and what your mindset was like going
into it.
Speaker 2 (05:50):
Gosh, we built this trip up so much. It was
this luxury cruise ship that was going to Turkey and
Greece and Italy. We planned this for a whole year,
like every moment of it was going to be perfect,
and it's the perfect encapsulation of how I was living then,
which is there there will be a time where life
(06:11):
is finally what I thought it could be or what
I could be. And this trip kind of held all
this expectation in it. I mean I thought of what
I was going to wear every day exactly, and which
restaurants we would go to and which cities and what
hikes we would take. It was like nothing has been
planned more than that trip was.
Speaker 1 (06:31):
And so on the tenth day of your trip, you
were out on a long hike and you started to
experience some unusual symptoms. So what happened?
Speaker 2 (06:43):
So we were about a mile from the end, and
I realized that we didn't have enough water, and I thought, Okay, well,
this is too bad. I'm going to really need to
rehydrate when we get to the village. But it felt
like it would be a minor hiccup. But then we
which it sounds very Greek mythy, but we encountered a
pack of wild dogs blocking the path and they were
(07:08):
like bare their teeth, and we had to add all
this distance onto the hike to get around this pack
of dogs, and adding that distance onto the hike meant
that by the time we got to the village where
I was going to get some food and water and recover,
I was vomiting and felt really confused. I felt really
(07:29):
out of it. I had this sense that I was
sort of separate from the world. And then I just
rested and I thought, Okay, well, i'll rest today, I'll
be back tomorrow. And then I woke up the next
day and it was like I had traded my body
for a different body. I tried to get down the
hall to the bathroom and could barely walk. The room
(07:53):
was like spinning and like it was black around the
outside of my vision. I just felt I felt so weak,
and then I woke up every day for the rest
of the trip almost entirely bedbound. I would try to
do something and then just have to go right back
to bed. Made at home, went to a doctor. All
(08:16):
my blood tests were normal, and I felt no better,
and I kept thinking every morning that I was going
to wake up and feel totally fine, and then at
some point shortly after waking up, I would encounter the
limits of my body and end up back in bed again.
Speaker 1 (08:36):
You ended up seeing various doctors to try to unlock
this puzzle of what was going on in your body.
What did doctors tell you at the time. What did
they say was causing your symptoms?
Speaker 2 (08:48):
At first, they said it was just my body getting
over having heat exhaustion and electrolyte imbalance. And then when
it lasted and lasted and lasted, the nausea and the
dizziness and the fatigue and this sense that my vision
was leaving, they said that I was just thinking too
much about my body, and that I was too focused
(09:09):
on my health, and that it was probably anxiety. And
you know, it wasn't too long before I started to
have other symptoms. My skin sort of changed color. I
started to get yellowish the bones, and my feet started
to break, like I would just walk around the house
and my bones would break. I had little hairs growing
(09:30):
all over my body. I was losing so much weight,
and so I was watching my body change. And then
I was told that, no, nothing is happening. You're just
too worried. You're just thinking too much about it.
Speaker 1 (09:43):
Wow. You know, there are so many parts of your
story that are so exceptional. This is one that I
feel is so universal and so relatable to so many people,
especially women who feel like their concerns about their bodies
aren't being taken seriously. Yeah, what did it feel like, Jessica?
(10:04):
To feel your body changing in these ways that no
one around you could explain that medical professionals were simply dismissing.
Speaker 2 (10:16):
I felt like they were probably right because I had
such a tendency to blame myself and to demand perfection
from myself that I assumed that I was somehow doing
something wrong. And so I made this massive spreadsheet of
symptom on set date and what had happened right before it,
(10:38):
and what supplements I had tried, and what new diets
I had tried. You know, I had cut out gluten
and then reintroduced you know, I tried everything, and I
just kind of thought, well, I could figure this out.
I also just felt terror because I was experiencing something
very real and being told that it wasn't real. But
(10:59):
I was living it inside my own body, and so
there was just no way to reconcile it. And I
eventually decided that I must be crazy, that I had
tricked myself into thinking I got sick on that hike
and I didn't.
Speaker 1 (11:17):
I mean, you talked about the fact that you were
always so self critical, right, like always doubting yourself. What
did this do to the trust that you had in
your ability to even live in your own body and
understand what was happening to it?
Speaker 2 (11:32):
I mean, it was gone. It was totally gone. It
was such a foundational breakdown of identity because I had
all these ways that I had constructed a really shiny life,
and all of these ways that I thought I was
about to have a good life or about to be
(11:52):
good enough, and then those were all vanishing. You know.
I wasn't able to work anymore. I was living alone,
my relationship had ended. I was in a one bedroom
apartment just trying not to die. Like every day it
was like, how will I get food today? How will
I get the things I need to do to stay alive.
I felt like I was constantly running a fever. I
(12:15):
was very underweight, even though I was always trying to
eat more, but I was constantly nauseated. I felt like
I was going to faint almost all day. Every day
when I did almost anything, my vision would start to
black out and I would start to lose consciousness. To
get food. If I went to the grocery store, I
actually had to scoot just on my butt on the
(12:36):
floor through the line at the grocery store. I couldn't
make it through the line. I couldn't get gas in
my car. I found this guy at a gas station
five minutes away, and I got his phone number, and
if I called him, he would put gas in my car.
You know, my entire day was the series of problem
solves because of this intense level of dizziness and nausea
(12:57):
and weakness and pain. I remember I tried to go
on a walk at that time because everyone said I
was fine, and then I started to black out and
I lay down on the grass and I thought, I
don't know what's going to happen other than that I'm
going to die because I I don't know how to
(13:17):
get help. I don't know what's wrong with me. I
don't know how I'm doing this to myself, Like how
have I convinced myself that this is happening if it isn't,
And how do I get out of here? Yeah?
Speaker 1 (13:30):
How long were you in this torture US state, Jessica,
where you were in limbo and you were being made
to question your own relationship with reality.
Speaker 2 (13:40):
It was two years, and then it was August of
twenty thirteen. I went to a psychiatrist and I said,
I don't know what's wrong. I'm desperate, but I need
some sort of medication that will fix this. And I
described what the last couple of years had been like,
(14:02):
and it's just this act of profound grace that he
listened really intently, and he noticed that the times I
felt the worst was when I was standing upright and
standing still. And he said, I don't think you have
(14:22):
a psychological condition. I think you have a neurological condition
with cardiac implications, where your body can't handle being upright,
and he referred me to a cardiologist for testing. I
remember I felt really happy, but also really scared that
someone would tell me that he was wrong, or that
(14:43):
it wasn't real. I was so disconnected from my own
experience and from any belief in myself, you know, the
slightest breath could like blow me away from this new
sense of hope or this new sense that maybe I
wasn't completely delusional about my own physical experience. And then
there was also the logistics. So the doctor he referred
(15:06):
me to was in Charlotte, which was two hours away,
and I had to figure out how to get there.
I couldn't drive, you know. Every time I would try
to drive, I would start to faint. And so this
friend from college was passing through town and I asked
him if I could pay him to take me to
this cardiologist in Charlotte, and he did. I was earning
(15:28):
no income and my insurance didn't cover the doctor who
could do the test. So I remember I called my
parents and I asked them if they could lend me
the three thousand dollars for the test, and they did so.
I was also just still trying to survive. My whole
life was a logistic puzzle of survival.
Speaker 1 (15:47):
Eventually, you did receive a diagnosis.
Speaker 2 (15:52):
So I had the testing done. But also around that time,
my younger sister had developed the same symptoms, and so
I got the diagnosis of pots postur orthostatic doctor cardio syndrome,
which basically means my heart has trouble pumping enough blood
and oxygen to my brain if I'm upright, and it
comes with a bunch of other symptoms. And because she
(16:14):
developed the same syndrome, they sent us to a geneticist
where we found out we also had a connective tissue
disorder called EDS, which leads to POTS in some people.
Speaker 1 (16:27):
And what were the implications of the EDS diagnosis, Like,
understanding that there was this underlying genetic syndrome.
Speaker 2 (16:35):
It meant that it was very unlikely that we would
ever not have POTS or ever be healthy again. So
what had happened was when I went on that hike,
the heat exhaustion was a physical stressor that activated this
neurological condition that activated my body's difficulty with controlling heart
(16:58):
rate and blood pressure and digestion. And I had spent
so much time thinking about that hike, thinking how would
my life be different if I didn't go on this
one hike? But learning that I had this underlying genetic condition,
I now know that it was just it was ready
to be turned on. There was going to be some
physical stressor at some point that was going to activate it.
(17:20):
It's not all the fault of these wild dogs in Santorini.
There was going to be something that did it.
Speaker 1 (17:27):
You know, as all of this was unfolding on a
personal front, when it came to thinking about your self identity,
you insisted on identifying as someone who was sick versus
as someone who was disabled. Can you tell me a
bit more about that choice.
Speaker 2 (17:44):
I didn't even consider that I was disabled. I thought
I got sick and stayed sick, like I had this
body that was operating correctly, and then it stopped operating correctly,
and that's what illness is. I don't even think I
thought about what being disabled meant. You know, my sister
that had died when I was younger was disabled. She
(18:06):
had seizures, and she had some paralysis and hearing life
and had a you know, sort of profound disability. And
I never even considered the word for myself, which was
funny because, well, I think it's mostly internalizedableism. Because I
had a disabled parking placard, I was at that point
receiving disability insurance income. I had the word disability kind
(18:28):
of hovering around me, but I just always thought it
was like an incidental term or a practical term, and
not one that actually applied to me or meant anything.
Speaker 1 (18:41):
Tell me then, about transitioning from identifying as someone who
was sick to someone who is disabled. What led to
that internal evolution?
Speaker 2 (18:53):
After the diagnosis, I spent a lot of time trying
to not be sick. Still, even knowing that it was
unlikely to be successful, I tried anything a doctor said
because I thought I could beat it. I was still
a striver, you know, I was still trying to be sick.
And then I was in graduate school for social work.
(19:14):
At that point in my life, it was twenty seventeen.
I had been sick for what I would have said,
sick for six years, and I had started to craft
a new life for myself as a sick person. You know.
I had moved to California, where the temperature was easier
for me to manage. I made friends, I had started
dating my now husband, David. I had this full life,
(19:37):
but I still had this unresolved relationship with my very
sick body. And I had a semester where I could
do an independent study, and so I developed my own curriculum,
and the title of my independent study was Disability and Grief.
And it's interesting looking back at that, because it's clear
(19:57):
that there was part of me that was wanting to
wrestle with disability, because why would I have created this
independent study and this reading list for myself? But I
made myself a reading list of ability scholars and disability
thinkers and memoirists and philosophers, and then I spent a
semester reading them. And the first book I read was
(20:20):
a book called Minority Body. And at the beginning of
the book, doctor Barnes Elizabeth says that disability in itself
is not necessarily worse than not being disabled, that it's
the mere difference instead of a bad difference, and that
(20:43):
being disabled is a way of having a minority body.
Like there's the majority of the way bodies function, and
then there's the minority of the way, and disability is
the minority way, and that is not a value judgment,
and something about the way my brain works. It's like
this logic, this philosophy. I was just like, oh, okay,
(21:06):
becoming sick wasn't when my body or wasn't like it
worked and stopped working. But my body went from this
one way of being and now it is this way
and it's up to me to decide the meaning behind that.
It isn't an inherent loss. And then what happened after
(21:31):
I read Elizabeth's book is I read a couple dozen
other books by disabled authors, and I read poetry and
memoir I read like Ronda Olkin's instruction on how to
teach disabled social work. You know, I read this breath
of work by disabled writers, and while I decided to
identify as disabled because I wanted to be one of
(21:53):
these people, like I was reading the most brilliant and
creative revolutionaries. It felt like there was this group of
people who were saying the way that you were before
when you thought that a good enough life was up
to you, when you thought it was just a matter
(22:14):
of working harder, that is a message from the world,
and that disability is a counter argument. It's a way
of saying everything we believe about what matters, or about
what we should strive for, or about what we're capable of,
all of that may be wrong, and let's consider a
(22:35):
different perspective. And I just thought, like, I want to
be one of you. And so it felt like an honor.
It felt like I had transitioned into a disabled body
without realizing it, and that by acknowledging that identity, I
got to be part of the greatest group of people
I had ever been introduced to.
Speaker 1 (22:56):
Wow, you're right about the fact that this was the
first time that you considered the idea that quote. If
like it's harder for a disabled person, we should consider
the possibility that it's not our body or minds that
are to blame, but the social structures that we navigate
with those bodies and minds. And one insight that was
(23:17):
so thought provoking is those who are not disabled don't
get to define the disabled experience through their vantage points.
Since goodness and wellness and worthiness is all just a
state of mind for any given person.
Speaker 2 (23:33):
That's exactly it. I get to decide what my life
means now, and if you're sorry for me like that pity.
I really think pity is like just bumping right up
against disdain. I think pity is so dangerous. It's not empathy.
There's such a difference, and I think we need to
(23:55):
be so careful about pitying another person's life based on
our own assumptions of what it would be like. And
I could decide I like my life less now like
I get to decide it. It doesn't mean every disabled
person has to be happy with their identity, but it
is up to the disabled person to decide. It is
not up to another person to say it is worse
(24:16):
to be disabled. And I'm so careful about this because
it's not a pressure for other people to feel this way.
And it's not overly trite, and it's not silver lining anything,
but I deeply mean that I would choose this version
of my life. That I like my life as a
disabled person far more than I liked my life before.
Speaker 1 (24:44):
We'll be back in a moment with a slight change
of plans. As Jessica began to embrace her disability, she
(25:13):
no longer saw herself as someone who might one day recover. Instead,
she saw herself as someone whose body had changed and
who was now a member of a vibrant, powerful community.
And as Jessica began reimagining her life, she also began
to reconsider her thoughts on motherhood. She reflects on this
(25:34):
shift in her new book Unfit Parent, A Disabled Mother
Challenges and Inaccessible World.
Speaker 2 (25:42):
So when I was in my twenties, people would always
talk about kids and who was having kids and who wasn't.
I always said I didn't want to, but I said
it was because I didn't want kids to cremate my style.
I was like, well, if I have kids, I won't
be able to travel like this. But the truth was,
I knew the way I talked to myself, and I
(26:02):
knew the way I treated myself, and I was positive
that if I had a kid, I would treat them
that way and that I would destroy them. I just
thought I could never I could never do this to
a child. I could never subject a child to me.
And then when I identified as disabled and sort of reckoned
(26:24):
with that, I started to like myself for the first
time in my life.
Speaker 1 (26:31):
I'm assuming that wasn't a shift that happened for you overnight.
What unlocked this newfound compassion for yourself? What beliefs did
you have to revisit and reconstruct in order to start
to like yourself?
Speaker 2 (26:46):
I think it was control. It has to be, because
for all those years I thought that it was in
my control to be perfect, or to form a perfect life,
or to be good enough. And becoming disabled where so
little is in my control. Now I cannot deceive myself
that perfections attainable, or that like the ideal life is
(27:09):
like close close at hand. It's you know, my life
is so different from what I had always pictured as
being perfect. I never stopped moving before I got sick,
and then I almost never am moving now. I mean,
I have had to get used to myself. I'm always
(27:31):
just stuck here in me, and like the force proximity
to my own brain, I had to make peace with
it and then eventually like it because I can't go anywhere.
Speaker 1 (27:42):
You and your husband ultimately decided that you would like
to become parents. Do you remember having any specific concerns
entering parenthood.
Speaker 2 (27:52):
Well, so, the way that David and I became parents,
we were foster parents, and we were not thinking we
would have a newborn, So my consideration it was a
little different. Our assumption is that we would have a
preteen or a teenager, and then we got our license
up through aged twelve, so then we thought we'd probably
be taking care of a preteen and only for a
(28:13):
temporary amount of time. And I had this moral conviction
that we needed to give our time and our space
to kids who needed a place to live. I just thought,
it is indefensible if we have a second bedroom and
I have the time and the capacity, that we don't
leave it open for a person who would need somewhere
to stay. And so because of my conviction about that,
(28:36):
I didn't have a lot of reservations.
Speaker 1 (28:39):
Now, your foster parenting journey ended up being quite different
than what you expected, because you did not foster a teenager.
You fostered a newborn. So tell me about what that
experience was like.
Speaker 2 (28:50):
We got a call at nine pm that there was
a newborn who needed a place for a few weeks,
and they asked if we could take her. We were
not expecting a newborn, but I have experience with babies
because I'm the oldest of many cousins and the oldest sibling,
and I really like babies, and so we said yeah.
And that's how I became a mom was twelve hours notice.
(29:15):
We didn't have baby supplies. I posted on the neighborhood
next door group and said, I unexpectedly have a newborn
if anyone has any extra supplies, And then people just
started dumping stuff off on our porch and we got
everything we needed within a day. And I think becoming
the parent of a newborn as a surprise is something
(29:40):
that saved me from parts of parenting that it would
have been very hard for me. I think I would
have worried so much. I would have worried about my disability.
I would have worried about the practical parts I would
have fallen into. Probably at that point, a lot more
of the perfectionism ideas. But because there was no notice,
there was no time to try to do it perfectly.
(30:01):
I was just with a friend yesterday and I pulled
up a photo on my phone of getting home from
the hospital with my daughter, and she was on my chest,
and then the computer was on my stomach, and on
my screen is a Google search how do you take
care of a newborn?
Speaker 1 (30:17):
Wow, that's amazing. You've talked about how when you live
with the disability there is an added pressure to prove
your worthiness as a parent. Tell me more about that.
Speaker 2 (30:30):
You know. When I interviewed people, particularly disabled women who
gave birth, all of them had had social services called
on them in the hospital. There's one woman I spoke
to who cried the first time she tried the breastfeed
in the hospital. She's blind, and her nurse called CPS
and said that she was worried that this mom wasn't
equipped to parent because she cried. And it's like these
(30:55):
standards that disabled people are held to are different and
higher than the standards that non disabled people are held to.
When I am out by myself, I'm largely invisible as
a person in a wheelchair. When I'm out with my kids.
I'll usually have one kid on my lap and holding
my other kid's hand. It is like we are a spectacle.
(31:16):
And I'm very aware of the stairs, and I'm very
careful to always be performing parenthood in those moments because
the risk to disable people of having a concerned bystander
is real. That disabled people lose custody of their kids
at just an exceedingly high rate, And so I feel
the eyes on me, and I kind of perform to it.
Speaker 1 (31:40):
What does that performance look like?
Speaker 2 (31:44):
Always smiling, always being super attentive and engaged. I would
never dare look bored or annoyed with my kids in public,
and obviously being bored with your kids is a fairly
normal behavior, but I would never do it in public.
Speaker 1 (31:58):
Oh my god, I'm so incensed hearing that you have
to carry that extra burden that you're not afforded the
right that every non disabled parent has when it comes
to being impatient or losing your temper or being unbelievably
bored in the presence of your kids. One of the
most uplifting parts of your beautifully written book is that
(32:24):
you don't simply propose that disabled parents are great parents.
You actually argue that in many ways, they have built
mindsets over time that actually make them better prepared for parenting,
like more capable to be exceptional parents. I know that
these reflections took time to build, but tell me more
(32:45):
about that.
Speaker 2 (32:46):
I mean, there's so many ways of looking at it,
but one is that particularly parenting, like highly intensive parenting,
parenting where we're sort of told that if we do
things well enough, or say things just the right way
to our kids, or handle screen time in just the
right way or the right schools, that we can somehow
(33:08):
insulate our kids from suffering or insulate ourselves from watching
our kids suffer. And disability is this like off ramp
from that In my experience, like people think being disabled
was kind of worst case scenario, that we are living
a life that no one wants to live. And because
(33:28):
of that, because we've been rejected, we get to say, okay,
then what do we value? And so I feel like
there's this entirely different value system that disability has brought
my parenting. I did an interview recently and she was asking,
how do you decide which activities to do every weekend?
Like how do you keep the weekends from being too
two packed? And I was like, oh, we do nothing.
(33:53):
I mean, yeah, last weekend. It was funny. David and
I on Saturday, we're like, oh, it's been such a
busy weekend, and then we reviewed what we had done.
The only thing we did was meet a friend at
a park two blocks away for an hour and a half.
And for us that was like, we had a huge weekend.
We don't sign our kids up for anything. They don't
(34:15):
want to be signed up. We think everyone in this
house needs to rest our. Expectations of performance is really low.
And I think I have brought that mindset into parenting
because I was like, I had to let go of
it in my own life first, and I think there's
real freedom there. So I think that's that's one way
(34:36):
that we're equipped. But then the other is that there's
this very like practical thing is that a kid's body
and mind and a baby's body and mind is just
like so needy and so unpredictable, and a disabled body
and mind is really needy and unpredictable. And I think
there's just like really practical overlap and skills that the
(34:57):
skill set I need to take care of myself and
to survive in a very inaccessible world are a lot
of the same skills I need to take care of
my kids and to help them be equipped for the world.
And so I just see, like it's almost like I
was training to parent when I became disabled.
Speaker 1 (35:18):
Yeah, you've spoken about the fact that your disability has
helped you make peace with uncertainty.
Speaker 2 (35:27):
Yeah. I mean, I think this micromanaging of our kids
and of our lives. I believe that it's coming from
the way we all are so scared of death and
so scared of the people we love dying, which is
such a normal thing to be afraid of, and it's
(35:51):
like we will do anything to avoid the fact that
the inevitable outcome of every one of our lives is death,
and that the thing that is true for each of
us is that we will suffer. And then when you
become a parent, the thing that's true is that my
(36:13):
children will suffer in this world. That like I want
them to be okay, and they will not be okay forever,
and like there's nothing I could do to change that. Yeah,
And I think looking straight at that is so intolerable
(36:33):
that we panic and do a thousand things to try
to protect them and protect us. And I think for me,
the way my body suffers and the way I felt
so close to not making it, and the way I've
had to sort of confront my own precarity is that
(36:55):
it's painful, but it is a thing I can tolerate
that my kids will suffer. I mean, it hurts so much,
but I god, I mean I can barely tolerate it.
But I can't change it. I guess that's it. I
just can't change it, and I have to live with it,
and I have to live the days with them with
(37:16):
the uncertainty that is part of being alive in these bodies.
Speaker 1 (37:21):
Yeah, I kind of fascinating. Some of the studies you
cite in your book show that people with disabilities adapt
more quickly to things like cancer. Can you share a
little bit more about that.
Speaker 2 (37:33):
We've already had to say, wait, this isn't the way
it was supposed to be, and then dealt with that.
I think this like jarring change of like this isn't
the way life should be. I think that often hits
less hard for someone who has lived with a disabled
body or mind, and I it's just so much as expectation.
(37:55):
I think, like the conclusion I've come to is that
we are very bad at knowing what will make us happy.
We're very bad at making ourselves happy. And that's so
much of like how we suffer from changes because we
think it's not what life is supposed to look like
or what we are supposed to be like. And what
(38:15):
I've learned is we are just no good at knowing
what we can endure and what will change us and
who we will be on the other side, we are
so bad at predicting our own happiness.
Speaker 1 (38:26):
Yes, we forget that we ourselves will be altered by
the change. The change will influence our abilities and perspectives
and values and ways that are hard to predict. And
I just feel like there's an ounce of hope for
all of us who feel just totally overwhelmed at the
outset of change, that like, there's another version of Maya
waiting for me on the other side of change, that
(38:47):
there was another version of Jessica waiting for you that
was going to be able to tackle this.
Speaker 2 (38:53):
I really love that, and it touches on something I
talk about in the book is that people imagine disabled
parenting as their current version of parenting minus a thing
like how would I take care of this baby? The
way I do now, but then minus my vision if
I were blind, But like there's a different version of
(39:13):
you that would do it, like a it's a new thing.
It's not you. Yeah, it's not the current version, Jessica.
Speaker 1 (39:21):
We started off our conversation with you reflecting on the
fact that for so much of your life you were
chasing goodness, but that feeling was always so elusive, like
you never quite felt like you never quite felt like
you could get there. And so now, reflecting back as
someone who's gone through everything you've gone through, who has
(39:42):
taken on new identities like being a disabled person and
being a mother, how do you feel about yourself now?
Speaker 2 (39:51):
I don't feel perfect, and I God, I hope I
continue to change and learn, but I I do just
I like who I am. I have a set of
characteristics and I can see them, and I live inside myself.
(40:13):
I think I'm kind. I like the way I think
I am an excellent mother, and I am a open
and patient spouse, and I my own head and my
(40:34):
own emotions are a place that I feel really lucky
and thankful to live with and to be in. Yeah,
it's a like I feel so wildly lucky to like
myself because I didn't for so long. But when I
(40:56):
am just with myself and I'm with my own thoughts
and I'm feeling my feelings or analyzing something or working
through something or figuring something out, it is not always pleasant.
There's plenty of hard stuff, there's pain, there's suffering, but
I am glad to be with me doing it.
Speaker 1 (41:39):
Hey, thanks so much for listening. If you enjoyed this episode,
don't forget to follow a Slight Change of Plans wherever
you get your podcasts. Next time I talk with author
and podcast host and a sale about the art of
a hard conversation. We want to say something that's going
to make it feel tolerable and sometimes dig things just
(42:00):
need a little bit of air. That's next week on
a Slight Change of Plans see then A Slight Change
of Plans is created in an executive produce by me
Maya Shunker. The Slight Changed family includes our showrunner Tyler Green,
our senior editor Kate Parkinson Morgan, our producers Britney Cronin
(42:20):
and Megan Lubn, and our sound engineer Erica Huang. Louis
Scara wrote our delightful theme song, and Ginger Smith helped
arrange the vocals. A Slight Change of Plans is a
production of Pushkin Industries, so big thanks to everyone there,
and of course a very special thanks to Jimmy Lee.
You can follow a Slight Change of Plans on Instagram
(42:40):
at doctor Maya Schunker. See you next week.
Host
Dr. Maya Shankar
Popular Podcasts
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
The Clay Travis and Buck Sexton Show
The Clay Travis and Buck Sexton Show. Clay Travis and Buck Sexton tackle the biggest stories in news, politics and current events with intelligence and humor. From the border crisis, to the madness of cancel culture and far-left missteps, Clay and Buck guide listeners through the latest headlines and hot topics with fun and entertaining conversations and opinions.