March 27, 2026 • 21 mins
In this episode, Jennifer McKinney welcomes Kaye Love back to the podcast after many years . Kaye shares her story, "Solitary Confinement with Seizures and Watergate," about living in a time when disability was much less understood by the public. Jennifer and Kaye are able to discuss the importance of disability education and the need for accessible and inclusive child care centers.
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Kristen Gooch (00:09):
Welcome to True Tales by Disability Advocates
Podcast.
Authentic voices of peoplethriving with disabilities,
where individuals use the art ofstorytelling to change the
world.
John Beer (00:22):
The True Tales by Disability Advocates Podcast is
produced by Art Spark Texas'Speaking Advocates Program.
The free virtual training isopen to people of all
disabilities, no matter whereyou live.
Kamand Alaghehband (00:35):
Keep listening to hear how life's
challenges can spark a desire tospeak out and advocate for
yourself and others.
Kurt Wilkinson (00:50):
Hello! You're listening to the True Tales by
Disability AdvocatesPodcast. Changing the world one story at a time.
This is the show whereadvocates harness the power of
storytelling to build communitywith their peers and develop
empathy in others.
Hello, everyone! I'm KurtWilkinson.
Jennifer McKinney (01:13):
I'm Jennifer McKinney.
Adam Griebel (01:14):
I'm Adam Griebel.
John Beer (01:16):
I'm John Beer.
Kurt Wilkinson (01:17):
And we are your hosts for season three.
Thank you for listening to thisepisode of the third season of
the True Tales by DisabilityAdvocates Podcast, where we
continue to highlight artistsand stories from actual lives, a
(01:40):
project showcasing the lives ofartists with disabilities done
by Art Spark Texas multipledecades ago.
In this episode, we hear KayeLove's story, "Solitary
Confinement with Seizures andWatergate", recounting a time
before disability was widelyunderstood by the community.
(02:01):
Then we get to hear aninterview with Kaye from our
wonderful host JenniferMcKinney.
Now, let's hear Kaye Love'sstory.
Kaye Love (02:12):
So about 50 years ago, I was 10.
My body had recently startedrunning around without my mind.
A scary deja vu would wash overme.
Everything would fade to dark.
I would wake up confused,feeling like my brain was
scrambled, unable to see ortalk, with sore muscles and
(02:34):
bruises, feeling like a truckhad run over me.
No one could explain it.
And without an officialdiagnosis, I knew that some
people thought I was feigningillness, attention seeking, or
being lazy.
I remember my heart sinking asmy PE teacher loudly and angrily
(02:56):
accused me of faking to get outof running laps, which always
led to dropping, flopping, andending up sopping wet.
I felt ashamed, unheard, andpowerless that I couldn't get
them to understand what wasreally going on.
This was the era before specialeducation law.
(03:17):
At that time, there were nodisability advocates to support
my parents.
Legally, I had no civil rightsto defend anyway.
None of the adults in my lifeseemed to know what was going on
or why.
The one thing we agreed on wasthat it was clear I was neither
suitable for school nor daycare.
(03:38):
While I understand my parentsmade these decisions with my
safety as a priority, it saddensme that no one ever stopped to
ask how I felt about missing outon school and after-school
care.
Back then, there was littleunderstanding of the importance
of including children and peoplewith disabilities in
discussions that affect theirlives.
(03:59):
The school district placed mein a special school with other
students they did not know whatto do with.
While this allowed me to learnat my own pace, it
unintentionally limited myacademic potential by
discouraging me from exceedingexpectations.
I was also removed from afterschool care, which meant I was
(04:21):
left to fend for myself until mymother arrived home after a
long hour out of the bank.
Isolated and cut off from thesocial support of my primary
school community, I was leftalone to grapple with the
constant, unsettling fear ofwhat my body might do next.
The following summer was thefirst time I had ever stayed
(04:43):
alone all day.
It was also the year ofWatergate trials all day on all
four channels.
I was forbidden from going outby myself and not allowed to
answer the phone unless it rangtwo times and my mother hung up
and called back.
I lost touch with my friendsfrom my neighborhood school and
(05:04):
was not stable enough to go outwith them anyway.
My medical records say that Iwas having 10 to 15 seizures a
day.
I constantly wondered where Iwould wake up and what would
happen if I was hurt orseriously injured.
I was forced to get verycreative with entertaining
myself to overcome themind-numbing boredom and deep
(05:25):
sadness that arose from beingcompletely alone day in and day
out.
My only companion was aperplexing broadcast about
plumbers in Washington.
I mastered the art of hulahooping, starting at my ankles
and gradually working my way up,knees, thighs, hips, waist,
even my neck, before going backdown.
(05:48):
The rhythm shook shoop of thehoop became the soundtrack of
countless hours of practice.
I taught myself to play duetson the piano by myself.
I became the champion ofsolitaire and an expert puzzle
builder.
And I read the Lord of theRings trilogy.
I trained myself to cookhamburger patties, mac and
(06:10):
cheese, and frozen dinners.
I also learned to be okay withnot knowing where I was going to
fall, where I was gonna wakeup, or what damage I would do to
myself or my home environment.
I was very self-sufficient.
But looking back as an adult, Iknow this situation was far
from ideal for any child, muchless those with disabilities.
(06:33):
The following winter, doctorsfinally diagnosed me with a
seizure disorder.
I was relieved to know what wasgoing on and that there was
medication that could help.
While the medication did notstop the seizures completely, it
did control them enough for meto return to regular school.
However, I never did return tothe afterschool programs.
(06:55):
That summer, while theWatergate scandal, shrouded in
secrecy, dominated the newscycle on every channel.
I was facing the hidden crisisof my own, daycare
discrimination.
Being left home alone at 10years old, experiencing 10 to 15
seizures a day, was aterrifying and potentially
(07:17):
life-threatening situation.
Five decades have passed sincethen, and the Americans with
Disabilities Act has ensuredequal access for three decades.
I naively assume that suchdiscrimination wouldn't happen
today.
Yet I was stunned to discoverthat daycare facilities are
still exempt from specialeducation laws.
(07:39):
This raises a criticalquestion.
Are there still kids withdisabilities living through what
I did all these years later?
Did you know that in Americatoday, many daycare facilities
still do not serve children whohave disabilities?
Parents are still forced tochoose between having a job and
(08:00):
leaving their children withdisabilities home alone to fend
for themselves.
Please support the efforts ofthe Texas Council of
Developmental Disabilities intheir work to push for changes
to daycare regulations so thatall children in Texas can be
safe while their parents work.
Jennifer McKinney (08:18):
We're back.
And I'm Jennifer McKinney, andwe are with our guest, Kaye
Love.
And today we're talking abouther story that we just heard,
entitled "Solitary Confinementwith Seizures and Watergate".
Thank you so much, Kaye, forjoining us.
(08:39):
And your story, althoughtragic, is very powerful.
We really appreciate yousharing it with us today.
Kaye Love (08:47):
Thank you.
I'm glad to be here and getthis important message out
because it is important thatchildren get day care.
Jennifer McKinney (08:53):
I agree.
Now I have some questions foryou, Kaye, if you still have the
time.
Kaye Love (08:58):
Oh yes, certainly.
Jennifer McKinney (09:00):
How did Watergate play in to your
summer?
You said it was on all fourchannels.
Kaye Love (09:07):
So yeah, so Watergate was the only thing on TV that
that summer.
And I was used to watching, youknow, Sesame Street and Zoom
and PBS and things like that.
But, you know, it was justWatergate.
It was really strange.
You know, it was the plumberswere breaking in, and I never
could really understand what wasgoing on.
(09:29):
But they just, I remember themtalking about Ehrlichman, and I
I remember them talking aboutplumbers, and I kept thinking,
why are plumbers in so muchtrouble?
You know, and I would try tounderstand it, but I really
couldn't.
I just knew that there were badplumbers out there.
Jennifer McKinney (09:49):
Oh wow.
Was your television on a lot atthat time since you were
learning about the Watergatescandal and the bad plumbers,
quote unquote?
Kaye Love (10:00):
Yeah.
So it was, it was, I just leftit on because I found that when
it was off, it was just tooquiet.
And I think maybe it was justtoo much in my head or
something.
You know, there is a reasonsolitary confinement is
considered a major punishment.
And so just being all alone inmy house with nothing going on
(10:20):
just felt very edgy.
You know, I think sometimes Iturned it off to read or
something.
But at that time in my life, Ijust kind of had that when I was
home alone.
I left the TV on all the time.
And I was coming home fromschool before that, I would turn
the TV on and the TV would kindof be my babysitter and my
companion until my mom got home.
Jennifer McKinney (10:41):
Wow.
Was that hazardous or helpful?
Kaye Love (10:46):
I don't know.
So again, being home alone wasprobably not a good situation
for me.
You know, I think I tended toprobably watch pretty benign
programs.
I'm sure if you had your choiceof all the shows on today, um,
it might be more hazardous.
But for a 10-year-old, but itwas pretty much Dick Van Dyke
(11:07):
and Miller Tyler Moore and PBSand and those kinds of things.
So the the programming at thattime was pretty tame.
Jennifer McKinney (11:15):
All right, fair.
We've seen a glimpse into your10-year-old frightening and
confusing summer with seizures,but who are you today, Kaye, as
a result of that summer and thattime period in your life?
Kaye Love (11:33):
I really feel that that time period um helped me to
become very independent andcreative and resilient.
And I feel lucky that I livedthrough it because I think it
was a very dangerous situationfor me to be in.
But as you heard in the story,I learned to play duets to
entertain myself and solitaireand hula hoop.
(11:55):
And I had all of these creativethings I did to learn to enjoy
my own company.
And I feel like that that hasserved me well throughout my
life, that I was able to takethat scary situation and refocus
on myself on having a goodrelationship with myself and
learning to be self-entertainingand independent.
Jennifer McKinney (12:17):
I can totally appreciate that.
I agree.
That was a scary time for you,it sounds
like. But I think you're right. You are resilient. You bounce back.
You are amazing.
I wouldn't be able to playduets on the piano.
That's okay though.
What what was your favorite toplay?
Kaye Love (12:36):
Oh, it's been so long.
I'm trying to remember.
It was, I remember there wassomething I used to play with my
grandfather, and I would, I gotwhere I would play the top hand
with myself, and the bottomhand was his part, and I'd
learned to play them together,but I can't quite.
It seems like there was a roundor something that I learned to
play, but I can't quite rememberwhat it was at this point.
Jennifer McKinney (12:58):
I think I could do chopsticks, maybe.
That's about it.
Let's move on to the nextquestion.
What was the final straw thatled your mom to take you to the
doctor?
Kaye Love (13:10):
Well, I had been to a number of neurologists.
I think my record saidsomewhere between five and seven
neurologists that keptdiagnosing me as they called it
at that time hystericalconversion reaction.
I think at this time they callit non-epileptic seizures or
something like that.
And that's kind of when theycan't figure something out, they
make it a psychiatricdiagnosis.
(13:32):
And then um, I wasn't supposedto tell my grandparents I was
going to special school, and oneday that slipped.
And um, my grandmother jerkedme up and took me to Scott and
White.
And I had, I think, every testknown to man at that point.
Um, but I had a lot ofextensive testing and that and
(13:53):
at Scott and White, and theythey finally diagnosed me with a
seizure disorder.
But I had been to multiple,multiple doctors before.
Jennifer McKinney (14:02):
I can't imagine.
Oh my gosh.
Thank goodness for yourgrandmother taking you to
Scott and White.
Kaye Love (14:08):
My grandmother saved me, yes.
I don't think I would have madeit without her because turned
out the medicine they weregiving me was actually making it
worse.
Jennifer McKinney (14:15):
Oh no.
So was this the norm toconsider it a psychological
disorder at that time?
Kaye Love (14:23):
I don't know.
It's my understanding thatchildren's EEGs are often
abnormal and it's just was ahard thing to diagnose at that
time.
I don't know if that was thestate of testing or just being a
child or what it was.
Jennifer McKinney (14:35):
That's frightening.
I'm so sorry.
You said you returned toschool.
When you did return, were youable to rekindle some
friendships from before, or didyour peers treat you
differently?
Kaye Love (14:48):
I had a little bit different friends when I went
back to school, but I left thebeginning of the last semester
of fifth grade, and I came backthe beginning of the second
semester of sixth grade.
So everybody had changedschools and there were lots of
new people around.
And I lived in a neighborhoodthat was um many of my peers
were children of militaryofficers from Carswell Air Force
(15:12):
Base.
So there were people coming andgoing all the time, and it just
wasn't that unusual for peopleto come and go.
Jennifer McKinney (15:20):
Well, that is good.
Kaye Love (15:22):
Yes, I think I was lucky that it wasn't like a
in-person class.
Jennifer McKinney (15:26):
Otherwise, you would have been sort of
isolated, possibly, correct?
Kaye Love (15:30):
Right, right.
Uh-huh.
Jennifer McKinney (15:32):
All right.
I'm glad you were in a goodsituation near an Air Force base
where people came and went.
Kaye Love (15:41):
So I think it was just not noticed so much, you
know.
Jennifer McKinney (15:44):
Luck of the draw.
Kaye Love (15:46):
Right.
Jennifer McKinney (15:47):
All right.
Here's a tough question foryou.
It's the age-old question of,in your honest opinion, why do
you believe most daycare centersin North America are still
behind the times?
And how can they ever catch up?
Kaye Love (16:04):
I think one thing is they're not required to catch
up.
And I think pressure on them todo something about it is what
is going to be needed.
You know, it they may see it asexpensive or whatever, and it's
just not a thing.
And so they don't.
So I think it is going to takesome kind of requirement, like
the ADA requires places to beaccessible.
(16:26):
I think it is going to beneeded to put that kind of
pressure on them to take care ofchildren with disabilities.
And that's just not somethingour culture does right now.
And the other thing is justnormalizing accessibility and
inclusion and belonging in theculture in general.
When we start seeing disabilityas a typical and natural part
(16:49):
of being a person at some pointin time or another, we will all
get that way.
Just when it's accepted more,then that will be helpful as
well.
Jennifer McKinney (17:00):
I agree with you on that.
I think people are coming to aconclusion or a realization on
your note of acceptance thatmental illness is more accepted,
more understood, and can betreated.
So maybe disabilities will benext.
I don't know.
But I'm with you all the way100% on that.
(17:25):
What is next for you as anadvocate for people with
disabilities, such as your ownor otherwise?
Kaye Love (17:32):
Continuing to participate with the Coalition
of Texans with disabilities andtheir Raise Your Voices program
and hear about ways to advocateand follow their action guidance
on a regular basis to kind ofhelp with that end of it.
Also, since the last time I wason this podcast, I've completed
(17:52):
my doctorate ministry focusedon faith inclusion, and where my
research included a case study,creating an inclusion and
accessibility ministry within myown congregation.
And that project reallydeepened my understanding of the
impact of leadership inincreasing experiences of
belonging, and thataccessibility is not only
structural, it's cultural andit's spiritual.
(18:15):
True inclusion invites us tosee every person's presence as a
sacred expression of the sourceof being.
And in that way, when faithcommunities are more inclusive
and accessible, people withdisabilities are seen more as
that sacred expression.
And then it becomes morenormalized, if you will, in the
(18:37):
community.
And so building on that, I'mnow offering consulting to faith
communities that want to moveaccessibility beyond just ramps
and restrooms and move intothose cultural aspects of
genuine belonging wheredisability and difference is
understood more as that typicalexpression of humanity and
sacred wisdom and can contributeto transformation and growth,
(19:00):
much as this experience led meto be independent and resilient.
There are other spiritual andmental health and wellness
things that have come to me fromhaving seizures.
And so next year I'm alsoplanning to add a holistic life
coaching program for presssyndrome for leaders with
disabilities so that they canget some help with this
(19:22):
integration of spiritual,mental, and physical well-being
and lead with clarity andfeelings of belonging for
themselves.
So I'm really just continuingto help individuals and faith
communities embody a theology ofbelonging so that everybody can
see themselves as sacred andothers as well.
Jennifer McKinney (19:42):
Wonderful.
Thank you so much, Kaye.
It sounds like you have a lotgoing on for you and the
community.
Thank you for joining us today.
We've been speaking with KayeLove from the Actual Lives
program, which was about20-something years ago,
regarding her story "SolitaryConfinement with Seizures and
(20:05):
Watergate." Thank you for yourtime, Kaye.
Kaye Love (20:08):
Thank you for having me.
Kurt Wilkinson (20:10):
Thank you for listening to the third season of
the True Tales by DisabilityAdvocates Podcast.
If you enjoyed this episode, ohplease share it with your
friends and talk about us onsocial media.
If you'd like to let us knowwhat you think of the podcast,
consider leaving us a review onsocial media or on your favorite
(20:30):
podcast platform.
Don't forget to follow us onFacebook, Instagram, and
LinkedIn.
Goodbye, everybody, and have awonderful day.
Kamand Alaghehband (20:41):
All episodes of the True Tales by Disability
Advocates podcast are free onApple Podcasts, Spotify, and
anywhere you get your podcasts.
John Beer (20:52):
Funding for the True Tales Podcast is supported by
GTOPS, the City of Austin Grantsfor Technology Opportunities,
and by a generous grant from theFS
Foundation. Lighting paths. Firing ideas. Sparking creations.
Kristen Gooch (21:10):
To learn more about the Speaking Advocates
program, sign up for ournewsletter at Artspark TX.org.
That's A R T S P A R K T X.org.
Welcome to True Tales by Disability Advocates
Podcast.
Authentic voices of peoplethriving with disabilities,
where individuals use the art ofstorytelling to change the
world.
John Beer (00:22):
The True Tales by Disability Advocates Podcast is
produced by Art Spark Texas'Speaking Advocates Program.
The free virtual training isopen to people of all
disabilities, no matter whereyou live.
Kamand Alaghehband (00:35):
Keep listening to hear how life's
challenges can spark a desire tospeak out and advocate for
yourself and others.
Kurt Wilkinson (00:50):
Hello! You're listening to the True Tales by
Disability AdvocatesPodcast. Changing the world one story at a time.
This is the show whereadvocates harness the power of
storytelling to build communitywith their peers and develop
empathy in others.
Hello, everyone! I'm KurtWilkinson.
Jennifer McKinney (01:13):
I'm Jennifer McKinney.
Adam Griebel (01:14):
I'm Adam Griebel.
John Beer (01:16):
I'm John Beer.
Kurt Wilkinson (01:17):
And we are your hosts for season three.
Thank you for listening to thisepisode of the third season of
the True Tales by DisabilityAdvocates Podcast, where we
continue to highlight artistsand stories from actual lives, a
(01:40):
project showcasing the lives ofartists with disabilities done
by Art Spark Texas multipledecades ago.
In this episode, we hear KayeLove's story, "Solitary
Confinement with Seizures andWatergate", recounting a time
before disability was widelyunderstood by the community.
(02:01):
Then we get to hear aninterview with Kaye from our
wonderful host JenniferMcKinney.
Now, let's hear Kaye Love'sstory.
Kaye Love (02:12):
So about 50 years ago, I was 10.
My body had recently startedrunning around without my mind.
A scary deja vu would wash overme.
Everything would fade to dark.
I would wake up confused,feeling like my brain was
scrambled, unable to see ortalk, with sore muscles and
(02:34):
bruises, feeling like a truckhad run over me.
No one could explain it.
And without an officialdiagnosis, I knew that some
people thought I was feigningillness, attention seeking, or
being lazy.
I remember my heart sinking asmy PE teacher loudly and angrily
(02:56):
accused me of faking to get outof running laps, which always
led to dropping, flopping, andending up sopping wet.
I felt ashamed, unheard, andpowerless that I couldn't get
them to understand what wasreally going on.
This was the era before specialeducation law.
(03:17):
At that time, there were nodisability advocates to support
my parents.
Legally, I had no civil rightsto defend anyway.
None of the adults in my lifeseemed to know what was going on
or why.
The one thing we agreed on wasthat it was clear I was neither
suitable for school nor daycare.
(03:38):
While I understand my parentsmade these decisions with my
safety as a priority, it saddensme that no one ever stopped to
ask how I felt about missing outon school and after-school
care.
Back then, there was littleunderstanding of the importance
of including children and peoplewith disabilities in
discussions that affect theirlives.
(03:59):
The school district placed mein a special school with other
students they did not know whatto do with.
While this allowed me to learnat my own pace, it
unintentionally limited myacademic potential by
discouraging me from exceedingexpectations.
I was also removed from afterschool care, which meant I was
(04:21):
left to fend for myself until mymother arrived home after a
long hour out of the bank.
Isolated and cut off from thesocial support of my primary
school community, I was leftalone to grapple with the
constant, unsettling fear ofwhat my body might do next.
The following summer was thefirst time I had ever stayed
(04:43):
alone all day.
It was also the year ofWatergate trials all day on all
four channels.
I was forbidden from going outby myself and not allowed to
answer the phone unless it rangtwo times and my mother hung up
and called back.
I lost touch with my friendsfrom my neighborhood school and
(05:04):
was not stable enough to go outwith them anyway.
My medical records say that Iwas having 10 to 15 seizures a
day.
I constantly wondered where Iwould wake up and what would
happen if I was hurt orseriously injured.
I was forced to get verycreative with entertaining
myself to overcome themind-numbing boredom and deep
(05:25):
sadness that arose from beingcompletely alone day in and day
out.
My only companion was aperplexing broadcast about
plumbers in Washington.
I mastered the art of hulahooping, starting at my ankles
and gradually working my way up,knees, thighs, hips, waist,
even my neck, before going backdown.
(05:48):
The rhythm shook shoop of thehoop became the soundtrack of
countless hours of practice.
I taught myself to play duetson the piano by myself.
I became the champion ofsolitaire and an expert puzzle
builder.
And I read the Lord of theRings trilogy.
I trained myself to cookhamburger patties, mac and
(06:10):
cheese, and frozen dinners.
I also learned to be okay withnot knowing where I was going to
fall, where I was gonna wakeup, or what damage I would do to
myself or my home environment.
I was very self-sufficient.
But looking back as an adult, Iknow this situation was far
from ideal for any child, muchless those with disabilities.
(06:33):
The following winter, doctorsfinally diagnosed me with a
seizure disorder.
I was relieved to know what wasgoing on and that there was
medication that could help.
While the medication did notstop the seizures completely, it
did control them enough for meto return to regular school.
However, I never did return tothe afterschool programs.
(06:55):
That summer, while theWatergate scandal, shrouded in
secrecy, dominated the newscycle on every channel.
I was facing the hidden crisisof my own, daycare
discrimination.
Being left home alone at 10years old, experiencing 10 to 15
seizures a day, was aterrifying and potentially
(07:17):
life-threatening situation.
Five decades have passed sincethen, and the Americans with
Disabilities Act has ensuredequal access for three decades.
I naively assume that suchdiscrimination wouldn't happen
today.
Yet I was stunned to discoverthat daycare facilities are
still exempt from specialeducation laws.
(07:39):
This raises a criticalquestion.
Are there still kids withdisabilities living through what
I did all these years later?
Did you know that in Americatoday, many daycare facilities
still do not serve children whohave disabilities?
Parents are still forced tochoose between having a job and
(08:00):
leaving their children withdisabilities home alone to fend
for themselves.
Please support the efforts ofthe Texas Council of
Developmental Disabilities intheir work to push for changes
to daycare regulations so thatall children in Texas can be
safe while their parents work.
Jennifer McKinney (08:18):
We're back.
And I'm Jennifer McKinney, andwe are with our guest, Kaye
Love.
And today we're talking abouther story that we just heard,
entitled "Solitary Confinementwith Seizures and Watergate".
Thank you so much, Kaye, forjoining us.
(08:39):
And your story, althoughtragic, is very powerful.
We really appreciate yousharing it with us today.
Kaye Love (08:47):
Thank you.
I'm glad to be here and getthis important message out
because it is important thatchildren get day care.
Jennifer McKinney (08:53):
I agree.
Now I have some questions foryou, Kaye, if you still have the
time.
Kaye Love (08:58):
Oh yes, certainly.
Jennifer McKinney (09:00):
How did Watergate play in to your
summer?
You said it was on all fourchannels.
Kaye Love (09:07):
So yeah, so Watergate was the only thing on TV that
that summer.
And I was used to watching, youknow, Sesame Street and Zoom
and PBS and things like that.
But, you know, it was justWatergate.
It was really strange.
You know, it was the plumberswere breaking in, and I never
could really understand what wasgoing on.
(09:29):
But they just, I remember themtalking about Ehrlichman, and I
I remember them talking aboutplumbers, and I kept thinking,
why are plumbers in so muchtrouble?
You know, and I would try tounderstand it, but I really
couldn't.
I just knew that there were badplumbers out there.
Jennifer McKinney (09:49):
Oh wow.
Was your television on a lot atthat time since you were
learning about the Watergatescandal and the bad plumbers,
quote unquote?
Kaye Love (10:00):
Yeah.
So it was, it was, I just leftit on because I found that when
it was off, it was just tooquiet.
And I think maybe it was justtoo much in my head or
something.
You know, there is a reasonsolitary confinement is
considered a major punishment.
And so just being all alone inmy house with nothing going on
(10:20):
just felt very edgy.
You know, I think sometimes Iturned it off to read or
something.
But at that time in my life, Ijust kind of had that when I was
home alone.
I left the TV on all the time.
And I was coming home fromschool before that, I would turn
the TV on and the TV would kindof be my babysitter and my
companion until my mom got home.
Jennifer McKinney (10:41):
Wow.
Was that hazardous or helpful?
Kaye Love (10:46):
I don't know.
So again, being home alone wasprobably not a good situation
for me.
You know, I think I tended toprobably watch pretty benign
programs.
I'm sure if you had your choiceof all the shows on today, um,
it might be more hazardous.
But for a 10-year-old, but itwas pretty much Dick Van Dyke
(11:07):
and Miller Tyler Moore and PBSand and those kinds of things.
So the the programming at thattime was pretty tame.
Jennifer McKinney (11:15):
All right, fair.
We've seen a glimpse into your10-year-old frightening and
confusing summer with seizures,but who are you today, Kaye, as
a result of that summer and thattime period in your life?
Kaye Love (11:33):
I really feel that that time period um helped me to
become very independent andcreative and resilient.
And I feel lucky that I livedthrough it because I think it
was a very dangerous situationfor me to be in.
But as you heard in the story,I learned to play duets to
entertain myself and solitaireand hula hoop.
(11:55):
And I had all of these creativethings I did to learn to enjoy
my own company.
And I feel like that that hasserved me well throughout my
life, that I was able to takethat scary situation and refocus
on myself on having a goodrelationship with myself and
learning to be self-entertainingand independent.
Jennifer McKinney (12:17):
I can totally appreciate that.
I agree.
That was a scary time for you,it sounds
like. But I think you're right. You are resilient. You bounce back.
You are amazing.
I wouldn't be able to playduets on the piano.
That's okay though.
What what was your favorite toplay?
Kaye Love (12:36):
Oh, it's been so long.
I'm trying to remember.
It was, I remember there wassomething I used to play with my
grandfather, and I would, I gotwhere I would play the top hand
with myself, and the bottomhand was his part, and I'd
learned to play them together,but I can't quite.
It seems like there was a roundor something that I learned to
play, but I can't quite rememberwhat it was at this point.
Jennifer McKinney (12:58):
I think I could do chopsticks, maybe.
That's about it.
Let's move on to the nextquestion.
What was the final straw thatled your mom to take you to the
doctor?
Kaye Love (13:10):
Well, I had been to a number of neurologists.
I think my record saidsomewhere between five and seven
neurologists that keptdiagnosing me as they called it
at that time hystericalconversion reaction.
I think at this time they callit non-epileptic seizures or
something like that.
And that's kind of when theycan't figure something out, they
make it a psychiatricdiagnosis.
(13:32):
And then um, I wasn't supposedto tell my grandparents I was
going to special school, and oneday that slipped.
And um, my grandmother jerkedme up and took me to Scott and
White.
And I had, I think, every testknown to man at that point.
Um, but I had a lot ofextensive testing and that and
(13:53):
at Scott and White, and theythey finally diagnosed me with a
seizure disorder.
But I had been to multiple,multiple doctors before.
Jennifer McKinney (14:02):
I can't imagine.
Oh my gosh.
Thank goodness for yourgrandmother taking you to
Scott and White.
Kaye Love (14:08):
My grandmother saved me, yes.
I don't think I would have madeit without her because turned
out the medicine they weregiving me was actually making it
worse.
Jennifer McKinney (14:15):
Oh no.
So was this the norm toconsider it a psychological
disorder at that time?
Kaye Love (14:23):
I don't know.
It's my understanding thatchildren's EEGs are often
abnormal and it's just was ahard thing to diagnose at that
time.
I don't know if that was thestate of testing or just being a
child or what it was.
Jennifer McKinney (14:35):
That's frightening.
I'm so sorry.
You said you returned toschool.
When you did return, were youable to rekindle some
friendships from before, or didyour peers treat you
differently?
Kaye Love (14:48):
I had a little bit different friends when I went
back to school, but I left thebeginning of the last semester
of fifth grade, and I came backthe beginning of the second
semester of sixth grade.
So everybody had changedschools and there were lots of
new people around.
And I lived in a neighborhoodthat was um many of my peers
were children of militaryofficers from Carswell Air Force
(15:12):
Base.
So there were people coming andgoing all the time, and it just
wasn't that unusual for peopleto come and go.
Jennifer McKinney (15:20):
Well, that is good.
Kaye Love (15:22):
Yes, I think I was lucky that it wasn't like a
in-person class.
Jennifer McKinney (15:26):
Otherwise, you would have been sort of
isolated, possibly, correct?
Kaye Love (15:30):
Right, right.
Uh-huh.
Jennifer McKinney (15:32):
All right.
I'm glad you were in a goodsituation near an Air Force base
where people came and went.
Kaye Love (15:41):
So I think it was just not noticed so much, you
know.
Jennifer McKinney (15:44):
Luck of the draw.
Kaye Love (15:46):
Right.
Jennifer McKinney (15:47):
All right.
Here's a tough question foryou.
It's the age-old question of,in your honest opinion, why do
you believe most daycare centersin North America are still
behind the times?
And how can they ever catch up?
Kaye Love (16:04):
I think one thing is they're not required to catch
up.
And I think pressure on them todo something about it is what
is going to be needed.
You know, it they may see it asexpensive or whatever, and it's
just not a thing.
And so they don't.
So I think it is going to takesome kind of requirement, like
the ADA requires places to beaccessible.
(16:26):
I think it is going to beneeded to put that kind of
pressure on them to take care ofchildren with disabilities.
And that's just not somethingour culture does right now.
And the other thing is justnormalizing accessibility and
inclusion and belonging in theculture in general.
When we start seeing disabilityas a typical and natural part
(16:49):
of being a person at some pointin time or another, we will all
get that way.
Just when it's accepted more,then that will be helpful as
well.
Jennifer McKinney (17:00):
I agree with you on that.
I think people are coming to aconclusion or a realization on
your note of acceptance thatmental illness is more accepted,
more understood, and can betreated.
So maybe disabilities will benext.
I don't know.
But I'm with you all the way100% on that.
(17:25):
What is next for you as anadvocate for people with
disabilities, such as your ownor otherwise?
Kaye Love (17:32):
Continuing to participate with the Coalition
of Texans with disabilities andtheir Raise Your Voices program
and hear about ways to advocateand follow their action guidance
on a regular basis to kind ofhelp with that end of it.
Also, since the last time I wason this podcast, I've completed
(17:52):
my doctorate ministry focusedon faith inclusion, and where my
research included a case study,creating an inclusion and
accessibility ministry within myown congregation.
And that project reallydeepened my understanding of the
impact of leadership inincreasing experiences of
belonging, and thataccessibility is not only
structural, it's cultural andit's spiritual.
(18:15):
True inclusion invites us tosee every person's presence as a
sacred expression of the sourceof being.
And in that way, when faithcommunities are more inclusive
and accessible, people withdisabilities are seen more as
that sacred expression.
And then it becomes morenormalized, if you will, in the
(18:37):
community.
And so building on that, I'mnow offering consulting to faith
communities that want to moveaccessibility beyond just ramps
and restrooms and move intothose cultural aspects of
genuine belonging wheredisability and difference is
understood more as that typicalexpression of humanity and
sacred wisdom and can contributeto transformation and growth,
(19:00):
much as this experience led meto be independent and resilient.
There are other spiritual andmental health and wellness
things that have come to me fromhaving seizures.
And so next year I'm alsoplanning to add a holistic life
coaching program for presssyndrome for leaders with
disabilities so that they canget some help with this
(19:22):
integration of spiritual,mental, and physical well-being
and lead with clarity andfeelings of belonging for
themselves.
So I'm really just continuingto help individuals and faith
communities embody a theology ofbelonging so that everybody can
see themselves as sacred andothers as well.
Jennifer McKinney (19:42):
Wonderful.
Thank you so much, Kaye.
It sounds like you have a lotgoing on for you and the
community.
Thank you for joining us today.
We've been speaking with KayeLove from the Actual Lives
program, which was about20-something years ago,
regarding her story "SolitaryConfinement with Seizures and
(20:05):
Watergate." Thank you for yourtime, Kaye.
Kaye Love (20:08):
Thank you for having me.
Kurt Wilkinson (20:10):
Thank you for listening to the third season of
the True Tales by DisabilityAdvocates Podcast.
If you enjoyed this episode, ohplease share it with your
friends and talk about us onsocial media.
If you'd like to let us knowwhat you think of the podcast,
consider leaving us a review onsocial media or on your favorite
(20:30):
podcast platform.
Don't forget to follow us onFacebook, Instagram, and
LinkedIn.
Goodbye, everybody, and have awonderful day.
Kamand Alaghehband (20:41):
All episodes of the True Tales by Disability
Advocates podcast are free onApple Podcasts, Spotify, and
anywhere you get your podcasts.
John Beer (20:52):
Funding for the True Tales Podcast is supported by
GTOPS, the City of Austin Grantsfor Technology Opportunities,
and by a generous grant from theFS
Foundation. Lighting paths. Firing ideas. Sparking creations.
Kristen Gooch (21:10):
To learn more about the Speaking Advocates
program, sign up for ournewsletter at Artspark TX.org.
That's A R T S P A R K T X.org.
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