Deonna: [00:00:00] Hey, y'all. Welcome to Raising Disabled. Today we have my friend Shayla on. I have known Shayla for a long time. I actually... I don't know if you know this, Shayla, but, , whenever you used to go to camp, I was a counselor, and I remember you being a little camper and everything. And so that was my first experience with you.

But we went to LCU together, to college. We were in the same, I don't know what to call it except for a sorority, but we were in the same group. My brother-in-law is your cousin. We're just connected. Our... Some of our friends are the same people. We're connected on, we were just talking about this, so many- Mm-hmm

different levels. And so we're just so happy that you're here today, and we just want to start out by you telling us just a little bit about yourself,, and then we'll kinda get into it with you. But we're just so glad [00:01:00] you're here with us today. 

Shayla: Okay. My name is Shayla Bozarth, and I recently moved from Lubbock, which was so hard to do. But I recently moved to Bryan, Texas, and I work as a vocational rehabilitation counselor, and so I get to help people with disabilities of all kinds from dyslexia, to physical disabilities, to intellectual disabilities., The, live independently or to get jobs, which we can talk about , at another time. But it's a really cool opportunity that I get to do on a daily basis. 

Rhandyl: Oh, that's awesome. 

Deonna: That's awesome. I love that. .

Rhandyl: Okay, Shayla, so, , tell us about your disability and then we'll go into more of the meat and potatoes of everything. 

Shayla: Yeah. I have a disability called Charcot-Marie-Tooth disease. So when I used to tell people what I [00:02:00] had, I would say, "I have CMT." And they'd say, "So do I," 'cause they'd think it was Country Music Television.

Rhandyl: Yeah, I was about to say. That's awesome. "I have that." I would just go with it. The top 20. Yeah. The top 20. I used to sit there and watch those. Oh my gosh. Oh, me too. Yes. Yes. Okay, so what else does that entail? 

Shayla: It's a progressive genetic condition that affects your peripheral nerves. So it's like the wiring system that controls sensation, movement, hands, and feet. In my case, I also have scoliosis and hip dysplasia. Hip dysplasia is like when your, socket and the ball doesn't really connect or stay in one place so I have just lived with some of those conditions. And, uh, Charcot-Marie-Tooth , some people have scoliosis with it, but not every person has all of those extra things with it.

Rhandyl: Mm-hmm. [00:03:00] And at what point did you and your family find out about your, , disability when you were younger? 

Shayla: So I love this part of my story because I'm adopted. And so- aw ... whenever I was young, my mom... My cousin was born around the same time that I was, and I wasn't meeting the milestones that he was meeting, and my mom knew something was happening, something wasn't right, for lack of a better word. Yeah. And so she was just on alert, and she wanted to make sure what was happening so she knew how to take care of me better. And that led us on a seven-year journey to try to figure out- ... what was happening. Wow.

And so, uh, randomly, my uncle that lived in Port Neches at the time had a neighbor that had Charcot-Marie-Tooth, and he asked my [00:04:00] mom and dad to get me checked for that. And- wow ... that ended up being what was happening 

Rhandyl: Wow, that's wild to have, I mean, I don't think that's just some, random coincidence. And kudos for your mom for knowing and having that gut even though sh- you were adopted. She still was like, "No, this isn't right." Right.

Wow, seven years. Man, I'm sure that is a whole, episode in itself on that journey. But I wanna kinda skip to where, you're... So this started younger, like infancy, toddlerhood. So at what point did you really start to understand that your experience in life was different from other kids?

Shayla: So, not every CMT journey actually starts as a child- Yeah ... in pediatrics. So Alan Jackson, not to name drop, but he just found out that he has Charcot-Marie-Tooth, and that's why he, , retired [00:05:00] early. Yeah. Later in life, right? Right. But, uh, I kind of started to pick up on it because I'm very competitive- Mm-hmm and I like to play a good sport, and I like to chase my cousins around, and I like to do a lot of things, but I fell a lot, and other kids were not falling as much as I was.

And then whenever I was in second grade, you learn cursive and you're starting to write, and my hands hurt so bad. I would come home crying, and then in PE I couldn't do PE stuff, and that was heartbreaking for me because I liked running around and doing the parachute, and then I would always be falling- Yeah or, and I get back up, but I started realizing, okay, this is not others' life experiences, I guess. Well, yeah. 

And then the biggest thing that started my [00:06:00] realization, because I was in a small town community, and they just loved me, and they really took care of me, and they would drag me and just pick me up and clean my knees off. And we would go about our business. But whenever I was in fourth grade, I had hip surgery, and I was in what's called, a spica cast. Mm-hmm. And so that is a monstrosity of a cast, and at that time I was teeny tiny, so they always said that the cast weighed more than Shayla does. So they would carry me up the stairs, uh, holding the cast and me, and we would do things, but it was around that age that it really started to affect my outlook.

"My friends could do this. Why can't I?" Mm-hmm. I'm here in the house in summer, and I wanted to be out playing. 

Rhandyl: Yeah. Of course. 

Deonna: Yeah,, I'm learning so much about you even though I [00:07:00] thought I already knew a lot about you. I Mm-hmm ... I had no idea that you found out later like that. That's crazy.

Okay, so, uh, I wanna talk about your parents because I kinda know them, but, , I got to know them from, being related to the same people and everything.

But I do remember, I think it was, I... it was your mom, I think. Whenever Allie got hurt, she reached out to me. This was really early on, and I just thought, "Oh my gosh, yeah, Shayla's mom would kind of know what this is like and f- what this is feeling like." I remember appreciating that. But when I think about your parents, what did they do to help you be the independent person that you are now?

'Cause you really are, but what do you think they did? 'Cause I'm always trying to think of ways, even though Allie is so dependent, like physically for everything I want her to mentally just not feel so reliant on me for [00:08:00] everything, and we're trying to figure out ways to do that. But how did your parents, do things like that for you?

Shayla: So growing up, I kinda was like irritated at it, right? But now I can see it on the other side. Mm-hmm. Oh, they were teaching me some very valuable lessons., I was lucky , my cousin and my church and a lot of people took care of me and took the time to just hang out with me. And I always wanted, to be a part of the group. And my parents did a lot to encourage me to be a part of the group, and I didn't know until later exactly what kind of things they did on the backside of that.

But , my friends would give me piggyback rides a lot- Yeah because I would fall. Mm-hmm. And they would just wanna get from one place to another, and I just thought it was so nice that they would do that. But , my dad would tell people [00:09:00] don't carry Shayla." And I remember- ... him saying that, and I was like, "Dad, this will let me go and do things." And- while I was on people's backs a lot, as we all grew up, I had to walk more. And that was a really hard time, but I'm grateful because it led me to the decision to be okay with my decision of having to be in a scooter. Yeah 

Because before that was just weird to me, because it was different. Sure. And because I am older- Yeah ... and I was born in the '80s, and there wasn't a lot in the '80s for people with disabilities. No, and so, or even the '90s, you didn't see- No ... people do half the things that I got to do. And so- Mm-hmm ... i'm very appreciative for all of that.

And my grandparents, they lived on a farm, and we would [00:10:00] just get to go out there. And I had a cousin,, we had probably BB guns, and we would go varmint hunting. 

Rhandyl: Oh, yeah. 

Shayla: And, uh- ... we would walk forever. And if I fell down, he just picked me up. And we just kept on going, right? Yeah, mm-hmm. It was no big deal. And so I think a lot of who I am, I just got to be who I was, and my parents with my disability, they didn't try to keep me at home because, "Shayla could break her arm," or- Yeah ... "Shayla's fall could have killed her," or- Yeah ... "Shayla could have done this." I was able to, have some autonomy, , as a younger kid.

Deonna: Well, and take- I love that ... some risks. Yeah. 

Rhandyl: Mm-hmm. Yeah. Yeah, and like you said, you're from a small town up in the Texas Panhandle, and I was too, and like you said, though, there wasn't a lot in the '90s. There weren't all of these accessible and [00:11:00] inclusive things. That wasn't a thing when we were growing up, so- mm-hmm ... the fact that your parents were like, just let her be a kid," despite, the difficulties , that she has to overcome.

So at what, point and , around how old were you when you decided that you needed an assisted device for mobility?

Shayla: Not till I went to college. It was very hard on me. My cousin and his friends were, like, four years older than me and really m- they're my church friends, and they would carry me around. And then when they graduated, when I went to high school and I had to really do things on my own independently because people my own age were doing volleyball or they were doing- Mm-hmm something else, which is understandable. But at that time, I was like, "Oh, okay," and it was just a different world at that point. Yeah. Um,

But I was lucky and I still got carried around. I [00:12:00] remember one time, , there was a bomb threat, , and I was a freshman, and the, one of the football players came and said, "Hammock, you need to come with me. Grab your stuff." And I was like, "Okay." And so- ... if you want. Okay. I guess. And then we ... And then everybody started leaving the school, and he was sent to help me 'cause we had to walk to a church in town. And so the football team carried me to this place.

Rhandyl: I love this. Right? Oh my gosh. This is so... Yes. 

Deonna: That could have been so awkward too.

Rhandyl: Oh, man. That's a great story. 

Shayla: No, not in a small town it wasn't. It was just like- 

Deonna: Oh my gosh ... 

Shayla: exactly. I was used to it. Yeah. I was like, oh- That's awesome though ... okay. Where are we going? 

Deonna: Yeah, like I, I always remember you being with the scooter, and so it's funny hearing you say people carried you around because I remember at [00:13:00] LCU everybody was, like, always on your lap and you were taking everyone everywhere. So it's funny the, how that swip swap. . I was wondering when you started using your scooter, 'cause I wasn't sure.

Shayla: , I went to MDA camp. I think this should be mentioned. I went to MDA camp as a- Mm-hmm ... as a child. I was in seventh grade. I was mortified. I didn't wanna go. I was like, "Mom, these kids are not like me. They are- They made you go. Yes. Oh. A- and so, this girl that , went to church with me she was somebody I looked up to, and they have one-on-one counselors at this MDA camp. And so I talked her into going too. I told my mom, "If she goes, I'll go." And she of course was like, "All right. Let's go." And she went for a couple of years too, and I got to meet some other people with muscular dystrophy. Mm-hmm

Not to go into the weeds of it, but CMT [00:14:00] and muscular dystrophy are no longer under the same umbrella, but, uh, I found a family in that MDA family, and so I , I'm really grateful that I got to go to camp. to see other people with disabilities on a whole spectrum, of needs or assistive devices. And coming from a small town, I was like, "Oh my gosh." So it's not weird. It's not- Mm-hmm ... awkward.... And while it might have taken me longer to understand certain people, or it might have taken us longer to do something it also broadened my horizon. And so seeing other people use medical devices helped me feel confident- Mm-hmm ... to have to use one when I did.

Rhandyl: Yeah. Yeah. And I can only imagine the sense of independence that you finally felt whenever you could get longer distances in and not be completely exhausted, you know- Mm-hmm ... by the time you got [00:15:00] somewhere. Or have to, rely on someone to carry you. So- yeah. ... i'm I'm proud of your parents and you, for making you go to that when you didn't want to because- ... I'm sure that was eye-opening for, obviously it was eye-opening for you.

Deonna: Okay. I wanted to say something about your parents too that I think about a lot is where you said they wanted you to be part of the group, and they did what it took to make that happen. And I've been thinking about that a lot because, Allie's about to be out of elementary and going into middle school, and getting into, like a church youth group, which in this part of the country, that's like usually around sixth grade, you start getting into high school kinda youth group situation at church.

And me and Dane the other day were like, "We have to make sure she can go to everything we possibly can get her at, even if it's really hard," because, like that's such a huge thing, I feel is having a [00:16:00] belonging in those types of groups, but yeah, as parents, if your kid wants to do something, I mean, you gotta figure out a way to do it. It's not gonna be easy or anything, but- No ... like I'm glad they did that for you and, you... it sounds like you had a lot of good people around you helping you feel that sense of, like belonging and stuff. So I'm glad they did that for you too. 

Rhandyl: Yeah. So you mentioned that you're really competitive and that you like to roughhouse- and all the things, and Deonna's mentioned that you love sports. So what is your favorite sport to watch, and what's your favorite team? 

Shayla: Well, of course, I'm a Red Raider fan. I'm a huge- Woo! Guns up. Guns up, yes. And, I love all sports. I grew up, , being appreciative of basketball. My family, they played basketball day in and day out. Mm-hmm ... I had an appreciation for that, and [00:17:00] then when I couldn't play, I kinda got my feelings hurt from the sport. volleyball was a very big deal, where I came from too, and I got to be the volleyball manager and stuff. So when you bring up sports, it's... I can't pick one sport- ... because I just enjoy them all. Yeah. But football a- is, of course, m- my go-to, always, 'cause you can yell and nobody hears you. Yes. Yeah. 

Rhandyl: Me too. I love me some football. 

Deonna: We always laugh 'cause every time we would show up to a Tech game, we'd be like, "Oh, there's Shayla." Almost every time we were like, "Oh, there she is." We always found you. Or I remember you trying to tell us, like, how to, get into the games with Allie and all these things, but yeah, we'll talk about that here in a second. But I wanna know, 'cause you've been to a lot of games what is your favorite game you've ever been to or, just one of those, like, amazing [00:18:00] experiences?

Shayla: It's hard to pick just one, but I'm gonna go real senti- 

Deonna: Give us your top couple. 

Shayla: Okay. I'm gonna go sentimental for my first one, and my grandparents from Oklahoma would come down and take me to the football games sometimes, and it was OU versus Texas Tech, and I think it was 2006, 2007, and it was, uh, nail-biter right till the finish. And we were- ... sitting in the end zone, and my grandpa, who's a big OU fan, bought tickets around other OU fans. And I- am a very spirited Red Raider. And- ... w- th- we got the ball right over the end zone, barely for a touchdown to win the game. 

Rhandyl: I remember this game. I was there- and- ... as a student 

Shayla: Yes. Mm-hmm. And I was a LCU student, so I [00:19:00] was there with my grandparents, not sitting, uh, with the students. I did that- 

Rhandyl: How was the student section being rowdy, I'm sure. 

Shayla: Yes. Well, we were in the end zone that it happened, and so I was like- Oh, wow ... "Daddy, it just happened." And all of the OU fans were just staring at me, like- ... I shouldn't talk to this lady right now. Yeah. And so that game is always memorable.

And then I remember always going to basketball games, and that was such a big deal growing up, with my family.

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So Deonna mentioned that she had reached out to you whenever they're going to games for the best ways to get places. So what do you wish most sports stadiums and concert venues understood about their disabled fans and the accessibility? And visual and all of the things. I'm just curious from your perspective. 

Shayla: Well I had some conversations with the athletic ticket office because I bought tickets to a really important game. And it was behind the student section, and they had moved the student section because of the revamps of- Mm-hmm ... and I wasn't ready for it to be the student section, and I couldn't see the whole game. And [00:21:00] I was like, "Some people might come here to just sit, but I don't. I want to watch the game." Mm-hmm. And so I had to learn to really pay attention to more than just, okay, here's a ticket. I had to think about, okay, are the students gonna be in front of me? I have to see a lot of different angles from this than anybody else.

Oh, yeah. And my friends have learned that when we get tickets. I'm going to a concert at a arena in Dallas , and my friend, she went through all of the things when she bought the tickets. Is Shayla gonna be able to see? Will people be standing in front of us? And thank goodness, , nobody will be in front of us, but it's just how our brains are wired now to- Mm-hmm ... look at the- Mm-hmm ... big picture, not just A to B. 

Deonna: Yeah. I know what you're saying, 'cause every time I buy tickets like even to go see a movie, I'm having to think. Like one [00:22:00] time Dane's entire family wanted to all go see a movie together, and they were about to buy tickets and I was like, "Hold on, because I have to look at this and see where we're gonna be and if it's gonna be, okay or whatever."

But... And it's frustrating to me. I don't know if you feel this way, but it's like a disability tax. Like- there's only certain places Allie can sit i- in let's- Yeah ... say, the United Spirit Arena or whatever it's called now. United Supermarkets Arena. Well, there's a very limited amount of seats she can sit in, and they're not cheap, you're like, "Okay, I'm getting charged a lot of money. I wish you could just sit anywhere you wanted," but that's obviously never gonna be the case, but I like it when venues don't charge way more for those seats. It's so frustrating. That's what I've been through. I don't know if that's what you've felt like too, even like for concerts and stuff like that.

Shayla: And then you think, "Oh, I I'll be on the floor and- No. ... I'll be [00:23:00] able to see." That's worse. 

Rhandyl: It's worse. 

Shayla: Yeah. That's way worse. And then- yeah ... but I will say that I went to Red Rocks a couple of times. Their tickets are $40 at the ground, and they're $40 at the top. I've heard that. Right. Both the ADA seats, they if somebody is sitting in the seat next to me that is not with me, they are asked to leave Wow. And I- Love that. Yeah ... 

Deonna: I heard Red Rocks was a really good disability experience, and we've had ... we went to The Sphere, and that was a really good experience in Las Vegas. They treated you like a royalty. From the second you walked in, they were just, like, all about you, helping you. If you wanted to be in a line, they would just shove you to the front and make everyone you would just cut every line. I mean, they were- That was the best experience I've ever had. I was like, "Oh, my gosh."

But yeah. That's cool. It's, it is so [00:24:00] hard. Mm-hmm. I mean, I remember you telling me about how you could buy ... This was a little risky, but you can buy tickets that are regular tickets and then ask for them to be swapped out, but it is a little bit of a risk. You have to be willing to take that risk, but sometimes it pays off, 

Shayla: mm-hmm. Sometimes. 

Deonna: We went to the Texas Tech basketball game last year, and I had accidentally ... I thought I was buying the top level on the concourse. I had accidentally bought one row down. I had no idea. We show up, and Allie can't sit in those seats. They're, kinda down.

And I went and found one of the concierge, and he completely swapped them out and made it right, and it was, like, my fault. And I just remember being like, "Oh, my gosh," it, the whole night was gonna be ruined 'cause of me. Yeah. And I was like, "I'm so sorry."

Shayla: Texas Tech is really good about accommodating. 

Deonna: . They [00:25:00] try- ... really hard. Yeah.

So I kind of met you around the time of college and things like that, and I wanna know 'cause, allie wants to go to the same school that we went to college at, and it, it makes me think of when I met you 'cause we were at the same school at the same time. And how did you feel about going to college independently?

Shayla: I grew up going to this campus from the time I was really young. I got to go to summer camps there. I went to weekend trips that they had available for us. My cousin went there, so I got to stay with him or I got to stay on campus some. And I already knew the campus , pretty well. I was nervous because I didn't know-- what my future looked like. And so- i, as independent [00:26:00] as I was, I- Mm-hmm ... was very tore. Am I gonna enjoy college? Will I be successful without my parents? Yeah. I mean, it was- They all live down the street. 

Rhandyl: Right. I mean, I think about just me going to college. You're 18 years old. You think you're an adult, but I can't even imagine your perspective of, independence and how that was going to be. And, going to college for your first time really ever being completely mobile around campus with a scooter for the first time that's a whole another thing to be nervous about, I would assume. But that's neat that you knew the campus and all prior to that. I'm sure there was a lot of things that had to be changed, or did you find things accessible, , whenever you went to campus and you were using a motorized scooter?, How was that? Did you discover lots of things that weren't actually accessible or...? 

Shayla: Well, as much as I wanted to go to LCU, [00:27:00] LCU was prepared for me. Oh, good. Um, And I don't know how true this is, but I heard one time from somebody in admissions that they knew I was coming and so they had repaved some of the sidewalks to make it as accessible for me as possible. There was one building that had only stairs and It was my Bible class, and I still climbed the stairs. But as Deonna mentioned, everybody always rode my scooter. And one time I was in Bible class, and I remember looking out the window, and my, uh, professor, he... I said, "I think I need to go out there because I see my scooter."

And everyone was like, "We're on the second floor." But they would just take it. It was a pink scooter, my first one was. And they would just take that everywhere. And so [00:28:00] even if I wasn't on there, they would find a way to rig it and hide it from me. And- Oh my gosh. It wasn't a- That's- It's- No, it's rude. 

Rhandyl: It sounds like a funny prank. Yes. It's like a prank. 

Shayla: Yes. Yeah. It sounds really rude, but these boys they loved me to pieces, and they would never have gone too- Yeah ... far without making it obvious. But My scooter was on the second floor on top of a Coke machine. And I was like, "Where are y'all? Y'all come back." But I remember having to leave class to go get my scooter. 

Rhandyl: That means you have a good sense of humor. Obviously you were just like- "okay, guys," "Come on." "It's funny. Now get it down." Like- Yeah ... let's get this..., yeah, tomorrow you can hide it somewhere else." Yeah. . I love it. 

Shayla: .. That's when I came up with the rules. 'Cause now as a aunt, I have some rules, like If you drive it and it dies, you have to push it back to a plug. And when I need it, you need to get [00:29:00] off of it because it's not a toy. It's also not weird, it's just not for your amusement all the time. Oh, yeah. I literally have to use it, mm-hmm. Yeah. And so, I mean, I've had to lay some ground rules. 

Rhandyl: Good, yeah, as you should. So on a more- Oh, man serious note, so, , what is something that you did in college that your younger self before that never imagined that you'd be doing? 

Shayla: Living on my own. Yeah. And doing my own hair day in and day out , I was embarrassed to say how hard that was to keep a appearance up, to stay clean and stay mobile, but yet still chase everybody around. And so I just wish I would've used my scooter more, because while I did use my scooter some, I still was pretty prideful, and I didn't use it as I could have

Deonna: Yeah. So you [00:30:00] made really good friends in college and a lot of them are girls that I or a couple of them are girls I grew up with, which is kind of funny, but you're still friends with them to this day. I see you guys together a lot, and you guys live in different places too, but tell us about them and y'all's relationship and kind of just like what that meant to you back then, but what y'all mean to each other now too. 

Shayla: So my favorite story is how I met this girl named Sarah, , and she from the get-go just loved my pink scooter, and I give her a hard time to this day, "Are you friends with me because of the scooter or because you loved me?" And she tells the story that a couple weeks before she saw me in Walmart, and She remembered me from that- Yeah ... moment. And so from that point on, we were good [00:31:00] friends. And that week of fish camp, , it rained, and I was trying to take care of this nice new pink scooter that I knew I needed to use, and she ended up having to carry me, but

my whole freshman class was just nice. My other friend that I met there, , her boyfriend was in my, , orientation group, and he was carrying me to the next spot we were going. And she was like, "Who is that that my boyfriend is carrying?" Oh. And we still laugh about that. 

Rhandyl: Oh, no he didn't. 

Deonna: That's cute. Oh my goodness.

So you guys still are really good friends. Have you maintained that friendship for this long? 'Cause I mean, it's been almost 20 years since we've been in college. 

Shayla: , That is a good question. I think we just were a really close-knit bunch. And even though [00:32:00] I moved, to Bryan, Texas, and some of them are in Cloudcroft, Artesia, all over the Panhandle, mm-hmm. Uh, I probably talk to them more than I talk to anybody here except for my husband. Mm-hmm. Because we just lived such lives together, , when we needed it, and we haven't stopped talking or grown apart- Mm-hmm ... like most friendships do. And I can't explain it, but I can say that when you're friends with somebody, in my opinion, that has a disability, it's deeper than- with other people. And so if you got to know me, I really can't keep things surface level because I love so intensely. Mm-hmm. Because that's the love that I've been given.

And so I think that has , kept us pretty close because one person knows me through athletics and another person might know my art side. [00:33:00] And so problem-solving, I was telling Deonna earlier about an instance that I have that my friends here in Bryan did not have an accessible house. Yeah. And I really had to work that out. With my friends, my girlfriends that I have, , had for those 20 years. And I was like, "If somebody were to come to your house in a scooter, what would you think?" And then they'd give me the, "Oh, you know I don't care." But I'd have to say, "No, pretend like you didn't know me. I need to know." Yeah. And so we would problem solve. 

Rhandyl: That's cool. So for your friends, obviously like you said, that you love deeper and you're way more than surface level of a friend, like automatically.

But what do you think make your friends really good to you as a disabled person?

Shayla: ...That's a very good question. I think, what I wanna say to that is for so long when [00:34:00] I grew up in a small town, it was different, because a lot of my friends and family just knew, okay, you go into athletics, you do this, you do that. And my life did not look like that. Mm-hmm. And so there was a time where I struggled because my friends wanted to be around other people who did do the sport or were able to do things without falling. And so it took a while. Now I'm friends with my whole graduating class still, and a lot of people from that small town, but it took a lot of growing up and not taking it personal. But when you're a child, you take things personal. Mm-hmm.

And then when I got to college I had a mixture of some friends that I grew up with, and then some friends that became like family. And I think what made them so special is that none of them saw me with a disability or as something ick. [00:35:00] And- I prayed about that growing up. , My verse that I would always say is First Peter 2:9 about being a part of the royal priesthood. Mm-hmm. And I knew at the end of the day that's where I belonged. But here on earth, I had to make my own friends, and I was able to get that chance at LCU. I was able to have friends that still to this day forget- that I'm disabled. Mm-hmm. They look at me for who I am, and then they're like, "Oh, yeah." "- how is that?" Yeah. It's not the main topic. 

Deonna: Yeah. , I was telling, my sister-in-law who's married to your cousin,

I was like, , "Shayla has Hannah and Sarah and Ashley and these girls that are so close to her and everything," and I'm like, "I hope Allie has..." And Allie is starting to get those kids, but I'm like, sh- you have to have, two or three really fierce friends, I [00:36:00] feel like, when you have a disability, because they are, they're almost like an extension of everybody that loves you. I mean, you know what I mean? Your family- Mm-hmm ... or your parents or your siblings or whatever, 'cause they're not always gonna be with you.

But like at college, your friends are with you so much. But yeah, I think about that a lot 'cause, Allie has friends... Like the other day, Allie had a bad day and it was like a little social s- situation that had happened and she was very upset about it, and I understood why. Even though I knew it was probably gonna work out, still I was trying to put myself in her position and being like, "Okay, yeah, that would be a bad feeling," like what happened.

And she texted her f- her friend that's always in all of our pictures and everything. Mm-hmm. And her friend sent her a, a thing from Pinterest that said, "When my friend's mad, all I need to know is who do I need to kill?" And it just made [00:37:00] me laugh so hard 'cause, I mean, you have to have at least one , unhinged friend- Ride or die in your life, I feel. Yes. Mm-hmm. Yeah. Yes. But it made me laugh so hard. I was like, "Whoa, we're coming in hot already." But- That's great ... 

but yeah. I love... I've just always loved y'all's friendship and I got to, know all of you guys back in the day. But I actually grew up with some of your friends and it just is such a cool thing what you guys have. You guys show up for each other and I just, I love it. I, it's like what I wish for everybody, honestly. Disabled- Yeah ... or not what I wish for everybody. But,

Shayla: , I feel really lucky that I do have those unhinged friends. Mm-hmm. And- yeah. ... honestly, my sister started out being my first unhinged friend. Mm-hmm. And she still told me the other day that some things that happened whenever I was little still irritate her. And I was like, "Okay." But the [00:38:00] sibling relationship- It's called family grudges ... too. 

Deonna: She's like, "I still hate them. I just want you to know." Yeah. "Still hate them." Yeah. "Not getting over it." Yeah, that's... I feel like every person has a family member that just really like just can't stand people for you and you like move on. Mm-hmm. Like I remember back in the day my mom used to be like, "Do not tell your nana if you're upset with somebody because you'll get over it and she won't." And I'm like, "Yeah, ain't that the truth."

But yeah, we all have to have some family member like that. And I like how you've been talking about your cousins too, because that's such an underrated relationship and I ha- you know, like cousins can really be there for you, and if you have a disabled cousin, you can really make a huge impact in their life by just being their friend and being there for them. I mean, it's such a, I don't know. Like I don't feel like it always gets the attention it deserves. That relationship can be very powerful. Yes

Rhandyl: [00:39:00] Okay, so Deonna and I have, episodes every once in a while called Dumb Things People Say. And it's more in a perspective for us, as caregivers, that people will say to us that just really irks a nerve. So for you though when it comes to your disability, what's something that people say to you that immediately makes you wanna roll your eyes or just like vomit or whatever?

Shayla: Deonna, you're gonna have to help me out 'cause I texted you a couple of these. I really try not to hold- You did ... a grudge on it because, , I get so irritated, and then it consumes me. Mm-hmm. And sometimes I can just get lost in poor pitiful me- Mm-hmm ... that I'm not like other people, , but sometimes it's something so small "You're too pretty to be disabled." And I'm like, what does that even have to do with anything? 

Rhandyl: We've had someone else tell us that too. Oh my gosh. Yes. You can't even. [00:40:00] And I've honestly had people say that about my daughter, and I know Deonna's been told the same thing about Allie. It's just- 

Deonna: Yeah. They think it's a- that's what Brooklyn was saying they think it's like a compliment. People say to her a lot. 

Rhandyl: Yeah. Well, thanks, but... 

Deonna: Okay. Well, here, it is what it is. I am disabled. I can't really do anything about it. 

Shayla: Oh my goodness. I think because I get so anxious before football games or basketball games or a concert, and then the cop will come up and will be like what are you doing?" And I will point to the license plate, and they're like, "Is this your car?" That I am about to go park in an ADA spot. Oh. They want... They give me the fifth degree about it, and I- oh my gosh ... kind of get it because people do take advantage, but also from a person with a disability, I'm just like, people with disabilities don't look the same. Like, how dare you- Mm-hmm ... come at me [00:41:00] and they're like, "Are you sure that this is your car?" Yes. 

Deonna: Oh my gosh. 

Shayla: Do you wanna pay my car bill?

Deonna: We got yelled at one time outside of a hospital because we pulled up right into the, where the valet drop-off is, and I get out, not looking disabled, and then I'm coming around the side to let Allie out, and I just start getting yelled at.

And I'm like, "They're about to feel stupid. They're about to feel real stupid." And I open up the ramp and she starts coming out. I'm still getting yelled at, and there were older people getting out next to us that were, like, in wheelchairs and things like that, just getting out, and I got... And I said, "She's disabled.

I have to get her out right here." I was basically saying- ... "calm down. Do you not see her?" And they're like, "Y'all are young, though." And I'm like, "I don't care how old I am." Do what? M- my daughter is disabled just the same as this [00:42:00] 85-year-old person. Like- Yes. ... I mean, I'm all for like, respecting your elders, but no, that is not how this works.

Like- Right ... I don't care how old anyone is here. No, dude. I remember just being like, "What?" But yeah. 

Rhandyl: Y'all were young, though? Okay. 

Deonna: We're young, though. I was like- ... oh my gosh. I was like, first of all, I'm like not that young, but whatever. 

Shayla: Yeah. Thank you. I know I'm young, but yeah, I was. I still belong here.

Deonna: Allie's friend last night got really shocked when I said I was 40. It made me so happy. I'm like, okay, I loved you anyways, but now I really love you. You just freaked out when you found out I was 40, so you're my new favorite person. So we wanna transition into, I'm not even gonna ask oh, is dating with a disability different? I mean we know that there's things about it that are different. I mean, yeah.

But I wanna know how you and your husband met and how, like, all [00:43:00] that came to be, and just kind of a little backstory on that. 

Shayla: Yeah. So Jeff and I met at a Texas country concert in Waco. I was visiting one of my longtime best friends, and she was like, "Can you please come to this, , concert?" And I was like, "Well, yeah." And it was a salsa festival, and so hot sauce, music, you have me, right? Yeah. Yeah. Uh, however, there's not humidity in Lubbock like there is in Waco, and so I was not feeling pretty at all. And I was sitting on my scooter- The hair was frizzing. Very much so. And I was sitting on my scooter, and she had gone to get something, and I was just by myself. And Jeff was in the VIP section, and we always laughed that I was in the poor people section. But what- The commoners ... is, yes, amongst the commoners.

[00:44:00] And they were so sweet to let me get so close to the band so that I could see without being in the pit. . So VIP and I were pretty close. And he was singing every song like he wrote it. And I- ... was singing every song like I wrote it. And he, I can't even remember what he told me that night, y'all. He, we talked, he made me laugh, and he gave me his card. And he said, "No pressure. I have to leave, but if you want, , give me a call." And I was like, "Okay." Or a text. So I took it, and I don't even think that my friend that was there that night knew, , that night that we met. Ugh.

But he was singing. He says that he saw my smile and my eyes, and it just drew him to me. And I was like, later, because I am a blunt person, I was like, "Why would you have given [00:45:00] your card to somebody on a scooter? What was your game plan there?" Aw. You had to have known it wasn't gonna be easy. Hey- And he said, "I just remember your smile." 

Rhandyl: Aw. 

Deonna: That's sweet. I love that.

I love that. 

Rhandyl: Okay, I'm a huge Texas country fan, too, so I gotta know, who were you guys seeing? 

Shayla: Wade Bowen- Ugh ... Josh Abbott, William Clark Green. 

Rhandyl: Wow. 

Shayla: And then- 

Rhandyl: That's a lineup right there. 

Shayla: Yeah. It was a good lineup. I love it. It was an all-day thing. 

Rhandyl: Oh, how fun. Love it. I love- That's such a cool story. And then, uh- Yeah I presume you called him. 

Shayla: Well, yes, I texted him. And he is an A&M fan, and- So when I told him that I was a Red Raider or- Oh boy ... from Lubbock, That's what made him wonder if he should continue talking to me. It had nothing to do with me being disabled. Bad blood. That's, that [00:46:00] was it. And I was like- 

Rhandyl: Oh, those Aggies. 

Shayla: I know. Gotta love them. And so He's 

Deonna: like, "The scooter I'm fine with. The Red Raider thing, I can't get past this. I'm sorry." 

Shayla: Oh my gosh. Well, thank goodness he did get past it, and we went on a date to the Texas Rangers to watch the baseball team. Mm-hmm. Because it was the last year that they played at Globe Life. By this point, I didn't get married till later in life. Mm-hmm. And so by this point, I was pretty, pretty rocking and rolling with my disability. However, when it came to a fella, I didn't wanna be like, "But you need to get me tickets in this one spot, or else it'll be really hard." Yeah. And so I just winged it, and I didn't tell him anything. Oh, my gosh. And I went with a friend of mine. Yes. And he [00:47:00] had a couple friend with him, and we get to our seats, and it was only three or four rows up. And, it was before 2020, and so I still could climb these stairs. Mm-hmm. It just wasn't, like, pretty. I didn't feel confident and pretty climbing stairs at that point. And you kinda wanna- Yeah ... feel like a rock star when you're on a date.

And- Yeah ... and so I had to overcome that, and they made him move my scooter. And usually, the, I could park my scooter by the entrance and take the key- Mm-hmm and it would be fine. Mm-hmm. They made him take the scooter somewhere to some room, and he came back and he loved it. He thought- Oh ... that was so fun that he got to do. It didn't phase him at all- Aw ... that he had to do any of that. 

Deonna: Yeah. That's when you know you have a good one- So then you knew ... when those minor inconveniences that you probably build up in your [00:48:00] head as really bad, he's just like, "Whatever." I mean, that's how I've noticed with Allie. She'll get really worried about something that someone's gonna have to do for her, and she'll just be like- 

Mm-hmm ... "

Oh, I don't wanna inconvenience them or bother them." And then the real ones don't care. They're just like ... even last night, we went to Moonlight Musicals.

Have you ever been inside that venue at- Mm-hmm ... uh, in Lubbock? 

Mm-hmm. 

Well, there's a crazy ramp to get in there. Yeah. And we had her little friend, Lake, in with us yesterday, and We had three folding chairs and the, Yeah ... and her chair, which I think her chair plus her is probably 140. I don't even know how much.

And her little friend's like, "I'll push her all the way up." And I was like, "I don't know if you can." For real. I just don't know- Yeah ... if you can. And she's like, "You watch me." It was like that's all I needed to say, and she pushed her up, and that ramp is hard to push up. Yeah. [00:49:00] And I was like, "Dang, girl."

But yeah, it's nice when... I mean, that he was like that right off the bat. It sounds like he didn't even have to get used to anything, which is... I hate saying that, but you know what I mean? There's stuff that our girls need that people get- Yeah ... used to, quote, unquote.

And that's just such a hard time period while that happens, but it sounds like he just was like, "Let's do this." So how long- ... did y'all date before you got married? 

Shayla: So then it was 2020. So it was- Yeah ... very weird. And- Oh, yeah ... very hard. And so it was either gonna make it or break it because- Yeah ... 2020 there wasn't much out there in the world to do. And so, we ended up- Nope ... dating for a year and then getting engaged for a year because you don't get married during football season. And- 

Rhandyl: Unless it's a bye week. That's what we did.

Deonna: And not on a Saturday. 

Shayla: Yeah. Oh, okay. That, a bye week would have been hard- That's [00:50:00] your rule ... for both of our teams. 

Rhandyl: Yeah, true. That's true. Yeah. Yeah. Yeah. House divided situation. 

Shayla: And- ... cold weather just kills me. I hurt so much. Mm-hmm. And so we waited until March. But he proposed to me in the mountains and we went up to Ruidoso, and he found a spot, and he had paid somebody to come sing around the campfire. And- Oh, wow. Aw ... that's when he did it. .

But I think one of the things I love about him the most is that,, it's a equal partnership. Because one of the things I was worried about is somebody would wanna take care of me all the time. Mm-hmm. Yeah. And that's not the case. , I'm good at certain things, and he's good at certain things, and it just, we gelled in that sense to where I'm not always taking care of him. He's not always taking care of me.

Rhandyl: Yeah. Mm-hmm. You have your independent roles, but you're together, and you m- make it [00:51:00] work. 

Shayla: Mm-hmm. 

Deonna: Yeah. 

Rhandyl: And you're happy. 

Deonna: Yeah. So, but- Y'all both bring things to the table. Yeah. 

Rhandyl: For sure. Yeah. And you mentioned that he talked about, , all he could see was your smile. Nothing else really mattered, like the chair, the scooter, none of that.

So What would you say that your husband sees in you that sometimes you have trouble seeing in yourself?

Shayla: I think what I appreciate is that he finds a respect in me, like a deep respect. And I think it's because he sees, I hope it's because people see a light deep within me that I just kind of can't turn off. I try to turn o- turn it down. But- 

Rhandyl: Dim it a little. Nah. No, shine that light, girl. Definitely- Shine that light

Shayla: the disco ball analogy always gets me. Like on Instagram there's an analogy that says you reflect different people. I just think that it's cool to watch him watch me [00:52:00] do life, because as we all grew up in West Texas and have, a certain outlook, I'm learning we are very fortunate to have grown up where we did, and to have the people who just saw a lady on a pink scooter, and okay, now you're mine and I'm never- Mm-hmm ... gonna let you go. And it's a deep, fierce love that people are getting to see now, not just in West Texas, but down here as well. Because it wasn't about when you love or are in a relationship, friendship family member that has a disability, I think that your perspective changes. Mm-hmm. And your perspective almost doesn't look like the world's anymore, because you- exactly ... you have to get real and love [00:53:00] fiercely. Because I think that is important to- Yeah who I am and what he sees. So he's getting a front row seat into watching how I maneuver certain social situations now that I don't have my West Texas family. . 

Rhandyl: Yeah , in our perspective with our girls, we talk about it all the time, and so many, people that we talk to like our perspective, our world gets smaller, but the little things don't matter, like the silly things, keeping up with the Joneses, like all that- Yeah like social life situation. , You just, I don't know you just see clearer, and so- Mm-hmm ... I think I understand what you're saying and your husband getting to see that day in and day out with you, through you, . 

Shayla: And I'm not perfect. I know that's shocking, but- What? [00:54:00] I know.- He sees my bad days, too. Yeah. And how- I handle things whenever I'm not at my healthiest mentally or physically. Mm-hmm. And he reminds me who I am, and he gets- Mm-hmm ... to see it from a pure different standard than what I'm used to from all my girlfriends. Because like I said, I was single for a really long time, and I have heard what they have to say over and over. But sometimes Jeff will tell me something, and I'll be like, "Oh, you've noticed that?" And I'm like- Mm-hmm ... "Okay." 

Deonna: It's a different perspective. That's cool. Yeah. Mm-hmm. 

So to wrap up today, uh, I know me and you, we have a lot of the same faith and, uh, beliefs., All three of us do. And I wanna know how your faith has played a role in your disability and just in your life. I mean, how... We all talk about that on here a lot. [00:55:00] It's been huge for both of us dealing with- Yes ... our kids' disability or with loss or whatever it may be. But how has your faith played out in your life? 

Shayla: Well, as you said youth group is a really big deal in West Texas. And- Mm-hmm ... I'm excited to see Allie's youth group and to hear all of the cool things that she's gonna experience. Because youth group and those people My church camp families, they saw me for who I was. I was lucky to grow up in a Christian home. , All of my family are Christians, I am lucky to say, and they love the Lord, and you could tell that whenever they saw me, , and I don't wanna say had to deal with me, but as I was growing up- it impact, it impacted me because it was different, right? Sure. And so I say deal, but it [00:56:00] was just a different world that we grew up in the '90s, the '80s. ,

And so people who see you is very rare, I'm learning. Mm-hmm. And then I went to this Christian retreat, and we learned about a chrysalis, and which is what a butterfly goes through- Mm-hmm before it turns into a beautiful butterfly. And that's where I really fell in love with that verse that I'm part of the holy priesthood. And I really just grasped onto that, because it's not about me. Mm-hmm. I was always embarrassed to have a disability. I wanted to be known for being the best basketball player or volleyball player. I wanted to be known for all these cool achievements instead of- Mm-hmm ... being known as Shayla's - that girl in a scooter. Mm-hmm ...

it took a while to see myself as Shayla with a scooter, not [00:57:00] the scooter with Shayla. . And- yeah ... up, I was lucky to have friends who were on my side, but as we were younger, of course, no matter how much we all loved Jesus, we all still bickered, and I still had self-image issues, Mm-hmm because I wanted to be beautiful. I wanted to do what o- other kids were doing. Mm-hmm. So I could not have made it through without , the word and all the prayers in my life that's why I am , who I am. And each phase of my life is different. There's new, , challenges in each phase because- Yeah ... of my disability. I mean, in regards to disability. In regards to all of our lives, there's- Yeah ... new challenges, right?

Mm-hmm. And , creation is a big thing for me because God just made them to be what they are, and like the [00:58:00] tree isn't making fun of the bird for who it is. Mm-hmm. "Look at that little bird sitting on me." The bird just- Mm-hmm gets to be a bird, and a tree just gets to be a tree. And all of the Bible verses just kinda mix together to make me who I am, because there's so many that pop in my head. Psalm 23, "He leads me, , by still waters." Mm-hmm. And there's a time for everything under the sea, so it's like I can be , who I am in Christ because of him.

Does that make sense? Mm-hmm. 

Rhandyl: Yeah. 

Deonna: . I think it's good that you've had that. It's such a... I mean, it's been such a grounding, huge thing for Allie even already, and for me and Rhandal, and all of our- Oh, yeah ... I mean, everybody in our houses. But yeah it's something sometimes I'm like, oh, if somebody, doesn't have it, I just wish they had that feeling, because it is such a nice connection too with other people. [00:59:00] But yeah, I love that- Yeah ... you have that, and that your family all has that with you. And I mean, it's just such a powerful thing to have, for sure. 

Shayla: And it's the love of Christ through other people to me. It's the love of Christ from other people about different things. One of my first surgeries I had I remember coming back and they had a surprise party for me on my street, and- Aw ... I don't even know who it was. It was tons of kids. I know it was my church that did it, but there were tons of kids down my street- Mm-hmm welcoming me home from Dallas. And I just remember- 

Rhandyl: Good old small town- ... churches, man. Yeah. Oh.

Deonna: They don't mess- Gosh ... around. 

Shayla: Not at all. 

Rhandyl: I mean, I just remember all the support, it'd been a decade-plus since my husband and I, had left our small town. But our whole families, a lot of our parents, everybody still lived there. But like when Remi was [01:00:00] born, , oh my goodness, the community was just, it was huge. It was astonishing. Mm-hmm. And overwhelming at times. I mean, it was just- Yeah ... , but it was amazing. And, A lot of that was, due to my church family growing up

but then, , faith in general just, I am so glad that you grew up with that, and it was instilled in you, and then as you have went on through all these phases of your life, college, friends, marriage, work, life, all the ups and downs that you've had and I'm sure, that your faith just continues to just grow and grow with every step of the way.

Deonna: Yes. Well, and I like what you said too about, people, , showing their love of God by doing things for you. Because like Allie's always "I feel bad," or, "I'm embarrassed," "People are having to do this for me or that for me." But I need to tell her what you said, because that really is the truth.

Like me and Rhandyl have talked about this a lot, like it's hard to accept help, uh, 'cause you just feel "Oh, I need to be independent and to be able to [01:01:00] tackle this by myself." But when people are helping you, whether you're disabled or not, like they're just trying to show you love. That's all they're trying to do, and it's okay to accept it even though sometimes- Right it's really awkward or weird, or you just, you have to allow people to do that or you're hindering their ability to serve, and so that's something I've had to learn the hard way,

 well, we're thankful for you getting to talk to us tonight. And You are a really good example of somebody who is just doing what they want. You're living your life. It's really funny because my daughter didn't really know you 'cause we had never lived in the same town or anything, and it was just funny 'cause she was always like, "There's your friend Shayla.

There's your friend Shayla." I mean, you just were always popping up everywhere, and I think it was slowly starting to show her, hey, I can still do what I want. This [01:02:00] isn't You know, like this isn't the end for me. I still get to do what I want, and it might take a little extra time or effort or whatever it may be, but you're a good example to other disabled kids and adults of get out there, live your life, do what you wanna do, and it's- yeah it's worth it. 

Rhandyl: It sounds like that's what you do for work. So hopefully the next time we talk to you on another episode, we'll get into that. Yeah. Because I'm very interested in your work in regards to the independent living of- Mm-hmm ... people with all spectrums of disabilities, so. Mm-hmm. Yeah. 

I'm so thankful to meet you and to talk with you, and I have been looking forward to this conversation. And hopefully we can have some more. Thank you so much, Shayla, for coming on. 

Shayla: Th- thanks for inviting me. And I, I have to say, I haven't watched you as much, Rhandyl, but I do love watching Deonna with Allie because it is a special bond [01:03:00] to have parents that love you and encourage you to get out there.

And so every- Mm-hmm ... time that I see Allie at Moonlight Musical or doing her voiceovers I'm just like- ... yes. Yeah. And so I just love that technology is allowing Allie to get to do as much as- ... she's doing. It allows us some good freedoms to continue, like- doing what we wanna do and living our fabulous lives. So- yeah ... i'm happy to watch y'all. 

Deonna: That's funny that you mention that. , Like what you were saying, your mom and dad made you do things. , I've made Allie do thousands of things in the last almost six years of her being disabled, and I've only regretted making her do one thing. And that was, we were in Dallas, and I made her, - against her wishes, against , all of our better judgment, [01:04:00] I thought she wanted to get in the ball pit. And I made her get into a ball pit, and she hated it. I have pictures of it, and she just looks mad. And I'm like, well, that's the one time I've made her do something. And we all knew it was stupid, and I just, in my mind I thought she was gonna think it was fun to be, like, out there laying in the ball pit. Yeah. Nope. She is still pissed at me about that months later. So yeah. Uh, we- That's funny ... that's the only one, so, yeah. You can't get them all right. It messes you- But,

thank you so much for coming on. We had fun getting to talk to you, and maybe we'll have you back again to talk about , your job someday, 'cause we ran out of time. But we love you, and we're so glad that you came on. 

Shayla: Thank you.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.