My Summer with Seizures

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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Transcript

Kristen Gooch 0:09

Welcome to True Tales by Disability Advocates Podcast. Authentic voices of people thriving with disabilities, where individuals use the art of storytelling to change the world.

John Beer 0:22

The True Tales by Disability Advocates Podcast is produced by Art Spark Texas' Speaking Advocates Program. The free virtual training is open to people of all disabilities, no matter where you live.

Kamand Alaghehband 0:35

Keep listening to hear how life's challenges can spark a desire to speak out and advocate for yourself and others.

Kurt Wilkinson 0:50

Hello! You're listening to the True Tales by Disability Advocates Podcast. Changing the world one story at a time. This is the show where advocates harness the power of storytelling to build community with their peers and develop empathy in others. Hello, everyone! I'm Kurt Wilkinson.

Jennifer McKinney 1:13

I'm Jennifer McKinney.

Adam Griebel 1:14

I'm Adam Griebel.

John Beer 1:16

I'm John Beer.

Kurt Wilkinson 1:17

And we are your hosts for season three. Thank you for listening to this episode of the third season of the True Tales by Disability Advocates Podcast, where we continue to highlight artists and stories from actual lives, a project showcasing the lives of artists with disabilities done by Art Spark Texas multiple decades ago. In this episode, we hear Kaye Love's story, "Solitary Confinement with Seizures and Watergate", recounting a time before disability was widely understood by the community. Then we get to hear an interview with Kaye from our wonderful host Jennifer McKinney. Now, let's hear Kaye Love's story.

Kaye Love 2:12

So about 50 years ago, I was 10. My body had recently started running around without my mind. A scary deja vu would wash over me. Everything would fade to dark. I would wake up confused, feeling like my brain was scrambled, unable to see or talk, with sore muscles and bruises, feeling like a truck had run over me. No one could explain it. And without an official diagnosis, I knew that some people thought I was feigning illness, attention seeking, or being lazy. I remember my heart sinking as my PE teacher loudly and angrily accused me of faking to get out of running laps, which always led to dropping, flopping, and ending up sopping wet. I felt ashamed, unheard, and powerless that I couldn't get them to understand what was really going on. This was the era before special education law. At that time, there were no disability advocates to support my parents. Legally, I had no civil rights to defend anyway. None of the adults in my life seemed to know what was going on or why. The one thing we agreed on was that it was clear I was neither suitable for school nor daycare. While I understand my parents made these decisions with my safety as a priority, it saddens me that no one ever stopped to ask how I felt about missing out on school and after-school care. Back then, there was little understanding of the importance of including children and people with disabilities in discussions that affect their lives. The school district placed me in a special school with other students they did not know what to do with. While this allowed me to learn at my own pace, it unintentionally limited my academic potential by discouraging me from exceeding expectations. I was also removed from after school care, which meant I was left to fend for myself until my mother arrived home after a long hour out of the bank. Isolated and cut off from the social support of my primary school community, I was left alone to grapple with the constant, unsettling fear of what my body might do next. The following summer was the first time I had ever stayed alone all day. It was also the year of Watergate trials all day on all four channels. I was forbidden from going out by myself and not allowed to answer the phone unless it rang two times and my mother hung up and called back. I lost touch with my friends from my neighborhood school and was not stable enough to go out with them anyway. My medical records say that I was having 10 to 15 seizures a day. I constantly wondered where I would wake up and what would happen if I was hurt or seriously injured. I was forced to get very creative with entertaining myself to overcome the mind-numbing boredom and deep sadness that arose from being completely alone day in and day out. My only companion was a perplexing broadcast about plumbers in Washington. I mastered the art of hula hooping, starting at my ankles and gradually working my way up, knees, thighs, hips, waist, even my neck, before going back down. The rhythm shook shoop of the hoop became the soundtrack of countless hours of practice. I taught myself to play duets on the piano by myself. I became the champion of solitaire and an expert puzzle builder. And I read the Lord of the Rings trilogy. I trained myself to cook hamburger patties, mac and cheese, and frozen dinners. I also learned to be okay with not knowing where I was going to fall, where I was gonna wake up, or what damage I would do to myself or my home environment. I was very self-sufficient. But looking back as an adult, I know this situation was far from ideal for any child, much less those with disabilities. The following winter, doctors finally diagnosed me with a seizure disorder. I was relieved to know what was going on and that there was medication that could help. While the medication did not stop the seizures completely, it did control them enough for me to return to regular school. However, I never did return to the afterschool programs. That summer, while the Watergate scandal, shrouded in secrecy, dominated the news cycle on every channel. I was facing the hidden crisis of my own, daycare discrimination. Being left home alone at 10 years old, experiencing 10 to 15 seizures a day, was a terrifying and potentially life-threatening situation. Five decades have passed since then, and the Americans with Disabilities Act has ensured equal access for three decades. I naively assume that such discrimination wouldn't happen today. Yet I was stunned to discover that daycare facilities are still exempt from special education laws. This raises a critical question. Are there still kids with disabilities living through what I did all these years later? Did you know that in America today, many daycare facilities still do not serve children who have disabilities? Parents are still forced to choose between having a job and leaving their children with disabilities home alone to fend for themselves. Please support the efforts of the Texas Council of Developmental Disabilities in their work to push for changes to daycare regulations so that all children in Texas can be safe while their parents work.

Jennifer McKinney 8:18

We're back. And I'm Jennifer McKinney, and we are with our guest, Kaye Love. And today we're talking about her story that we just heard, entitled "Solitary Confinement with Seizures and Watergate". Thank you so much, Kaye, for joining us. And your story, although tragic, is very powerful. We really appreciate you sharing it with us today.

Kaye Love 8:47

Thank you. I'm glad to be here and get this important message out because it is important that children get day care.

Jennifer McKinney 8:53

I agree. Now I have some questions for you, Kaye, if you still have the time.

Kaye Love 8:58

Oh yes, certainly.

Jennifer McKinney 9:00

How did Watergate play in to your summer? You said it was on all four channels.

Kaye Love 9:07

So yeah, so Watergate was the only thing on TV that that summer. And I was used to watching, you know, Sesame Street and Zoom and PBS and things like that. But, you know, it was just Watergate. It was really strange. You know, it was the plumbers were breaking in, and I never could really understand what was going on. But they just, I remember them talking about Ehrlichman, and I I remember them talking about plumbers, and I kept thinking, why are plumbers in so much trouble? You know, and I would try to understand it, but I really couldn't. I just knew that there were bad plumbers out there.

Jennifer McKinney 9:49

Oh wow. Was your television on a lot at that time since you were learning about the Watergate scandal and the bad plumbers, quote unquote?

Kaye Love 10:00

Yeah. So it was, it was, I just left it on because I found that when it was off, it was just too quiet. And I think maybe it was just too much in my head or something. You know, there is a reason solitary confinement is considered a major punishment. And so just being all alone in my house with nothing going on just felt very edgy. You know, I think sometimes I turned it off to read or something. But at that time in my life, I just kind of had that when I was home alone. I left the TV on all the time. And I was coming home from school before that, I would turn the TV on and the TV would kind of 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 was probably not a good situation for me. You know, I think I tended to probably watch pretty benign programs. I'm sure if you had your choice of all the shows on today, um, it might be more hazardous. But for a 10-year-old, but it was pretty much Dick Van Dyke and Miller Tyler Moore and PBS and and those kinds of things. So the the programming at that time was pretty tame.

Jennifer McKinney 11:15

All right, fair. We've seen a glimpse into your 10-year-old frightening and confusing summer with seizures, but who are you today, Kaye, as a result of that summer and that time period in your life?

Kaye Love 11:33

I really feel that that time period um helped me to become very independent and creative and resilient. And I feel lucky that I lived through it because I think it was a very dangerous situation for me to be in. But as you heard in the story, I learned to play duets to entertain myself and solitaire and hula hoop. And I had all of these creative things I did to learn to enjoy my own company. And I feel like that that has served me well throughout my life, that I was able to take that scary situation and refocus on myself on having a good relationship with myself and learning to be self-entertaining and 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 play duets on the piano. That's okay though. What what was your favorite to play?

Kaye Love 12:36

Oh, it's been so long. I'm trying to remember. It was, I remember there was something I used to play with my grandfather, and I would, I got where I would play the top hand with myself, and the bottom hand was his part, and I'd learned to play them together, but I can't quite. It seems like there was a round or something that I learned to play, but I can't quite remember what 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 next question. What was the final straw that led 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 said somewhere between five and seven neurologists that kept diagnosing me as they called it at that time hysterical conversion reaction. I think at this time they call it non-epileptic seizures or something like that. And that's kind of when they can't figure something out, they make it a psychiatric diagnosis. And then um, I wasn't supposed to tell my grandparents I was going to special school, and one day that slipped. And um, my grandmother jerked me up and took me to Scott and White. And I had, I think, every test known to man at that point. Um, but I had a lot of extensive testing and that and at Scott and White, and they they 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 your grandmother taking you to Scott and White.

Kaye Love 14:08

My grandmother saved me, yes. I don't think I would have made it without her because turned out the medicine they were giving me was actually making it worse.

Jennifer McKinney 14:15

Oh no. So was this the norm to consider it a psychological disorder at that time?

Kaye Love 14:23

I don't know. It's my understanding that children's EEGs are often abnormal and it's just was a hard thing to diagnose at that time. I don't know if that was the state 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 to school. When you did return, were you able to rekindle some friendships from before, or did your peers treat you differently?

Kaye Love 14:48

I had a little bit different friends when I went back to school, but I left the beginning of the last semester of fifth grade, and I came back the beginning of the second semester of sixth grade. So everybody had changed schools and there were lots of new people around. And I lived in a neighborhood that was um many of my peers were children of military officers from Carswell Air Force Base. So there were people coming and going all the time, and it just wasn't that unusual for people to 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 good situation 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 for you. It's the age-old question of, in your honest opinion, why do you believe most daycare centers in 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 to do something about it is what is going to be needed. You know, it they may see it as expensive or whatever, and it's just not a thing. And so they don't. So I think it is going to take some kind of requirement, like the ADA requires places to be accessible. I think it is going to be needed to put that kind of pressure on them to take care of children with disabilities. And that's just not something our culture does right now. And the other thing is just normalizing accessibility and inclusion and belonging in the culture in general. When we start seeing disability as a typical and natural part of being a person at some point in 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 a conclusion or a realization on your note of acceptance that mental illness is more accepted, more understood, and can be treated. So maybe disabilities will be next. I don't know. But I'm with you all the way 100% on that. What is next for you as an advocate for people with disabilities, such as your own or otherwise?

Kaye Love 17:32

Continuing to participate with the Coalition of Texans with disabilities and their Raise Your Voices program and hear about ways to advocate and follow their action guidance on a regular basis to kind of help with that end of it. Also, since the last time I was on this podcast, I've completed my doctorate ministry focused on faith inclusion, and where my research included a case study, creating an inclusion and accessibility ministry within my own congregation. And that project really deepened my understanding of the impact of leadership in increasing experiences of belonging, and that accessibility is not only structural, it's cultural and it's spiritual. True inclusion invites us to see every person's presence as a sacred expression of the source of being. And in that way, when faith communities are more inclusive and accessible, people with disabilities are seen more as that sacred expression. And then it becomes more normalized, if you will, in the community. And so building on that, I'm now offering consulting to faith communities that want to move accessibility beyond just ramps and restrooms and move into those cultural aspects of genuine belonging where disability and difference is understood more as that typical expression of humanity and sacred wisdom and can contribute to transformation and growth, much as this experience led me to be independent and resilient. There are other spiritual and mental health and wellness things that have come to me from having seizures. And so next year I'm also planning to add a holistic life coaching program for press syndrome for leaders with disabilities so that they can get some help with this integration of spiritual, mental, and physical well-being and lead with clarity and feelings of belonging for themselves. So I'm really just continuing to help individuals and faith communities embody a theology of belonging so that everybody can see themselves as sacred and others as well.

Jennifer McKinney 19:42

Wonderful. Thank you so much, Kaye. It sounds like you have a lot going on for you and the community. Thank you for joining us today. We've been speaking with Kaye Love from the Actual Lives program, which was about 20-something years ago, regarding her story "Solitary Confinement with Seizures and Watergate." Thank you for your time, 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 Disability Advocates Podcast. If you enjoyed this episode, oh please share it with your friends and talk about us on social media. If you'd like to let us know what you think of the podcast, consider leaving us a review on social media or on your favorite podcast platform. Don't forget to follow us on Facebook, Instagram, and LinkedIn. Goodbye, everybody, and have a wonderful day.

Kamand Alaghehband 20:41

All episodes of the True Tales by Disability Advocates podcast are free on Apple 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 Grants for Technology Opportunities, and by a generous grant from the FS Foundation. Lighting paths. Firing ideas. Sparking creations.

Kristen Gooch 21:10

To learn more about the Speaking Advocates program, sign up for our newsletter at Artspark TX.org. That's A R T S P A R K T X.org.