In this episode, I interview my friend Taylah to discuss the realities of living with cerebral palsy (CP), the most common motor disability in childhood, which affects the motor cortex, basal ganglia, and cerebellum. Taylah shares candid, humorous, and deeply insightful perspectives on navigating daily life, mobility challenges, independent living, and the systemic and social hurdles faced by individuals with disabilities. Key Discussion Points Understanding Cerebral Palsy & Mobility: Clarifying that cerebral palsy affects movement, balance, and posture, requiring immense physical effort and strength for everyday tasks like transfers. Taylah's use of a manual wheelchair over a power chair for accessibility, and the ongoing challenge of navigating non-ADA-compliant older buildings and infrastructure. The Problem with Public Assumptions & Infantilization: Addressing the major pet peeve of being infantilized, spoken down to, or having strangers bypass her to speak to a companion. Challenging the misconception that physical disability equates to a lack of cognitive capability or independence. Discussing the frustration of unsolicited pity and the importance of treating people with disabilities as capable peers. Independence and Moving Forward: Taylah shares her upcoming transition to living independently in an apartment with her best friend and starting college in August, pursuing goals of becoming an author or journalist. The realities of public transportation (like DART), fighting for adequate physical therapy, and dealing with institutional gatekeeping or insurance hurdles. Family Dynamics & Boundaries: Navigating the delicate balance of family members (and well-meaning grandmothers) learning to let go and encourage independence rather than over-protecting. Coping Through Dark Humor: Highlighting how humor, from falling out of a wheelchair and losing "dignity" to cracking jokes about aging joints, serves as a vital tool for resilience. Key Takeaways & Call to Action Practice Patience and Kindness: A core message from Taylah is to slow down, ask questions instead of making assumptions, and lead with genuine patience rather than patronizing help.
In this episode, I interview my friend Taylah to discuss the realities of living with cerebral palsy (CP), the most common motor disability in childhood, which affects the motor cortex, basal ganglia, and cerebellum. Taylah shares candid, humorous, and deeply insightful perspectives on navigating daily life, mobility challenges, independent living, and the systemic and social hurdles faced by individuals with disabilities.
Understanding Cerebral Palsy & Mobility:
Clarifying that cerebral palsy affects movement, balance, and posture, requiring immense physical effort and strength for everyday tasks like transfers.
Taylah's use of a manual wheelchair over a power chair for accessibility, and the ongoing challenge of navigating non-ADA-compliant older buildings and infrastructure.
The Problem with Public Assumptions & Infantilization:
Addressing the major pet peeve of being infantilized, spoken down to, or having strangers bypass her to speak to a companion.
Challenging the misconception that physical disability equates to a lack of cognitive capability or independence.
Discussing the frustration of unsolicited pity and the importance of treating people with disabilities as capable peers.
Independence and Moving Forward:
Taylah shares her upcoming transition to living independently in an apartment with her best friend and starting college in August, pursuing goals of becoming an author or journalist.
The realities of public transportation (like DART), fighting for adequate physical therapy, and dealing with institutional gatekeeping or insurance hurdles.
Family Dynamics & Boundaries:
Navigating the delicate balance of family members (and well-meaning grandmothers) learning to let go and encourage independence rather than over-protecting.
Coping Through Dark Humor:
Highlighting how humor, from falling out of a wheelchair and losing "dignity" to cracking jokes about aging joints, serves as a vital tool for resilience.
Practice Patience and Kindness: A core message from Taylah is to slow down, ask questions instead of making assumptions, and lead with genuine patience rather than patronizing help.
Infrastructure Matters: Better public transportation reliability, accessible housing options, and inclusive educational/work environments are essential for true accessibility.
Hello everyone. Today I'm gonna be interviewing my friend Taylah. She's gonna be telling you a little bit about what it's like to live with cerebral palsy.
Before we get started, just to give a little bit of background into what cerebral palsy is. Cerebral palsy is a group of neurological disorders that affect a person's ability to move, maintain balance, and sustain posture. It's caused by abnormal development or damage to the brain that occurs before, during, or shortly after birth.
And it's also the most common motor disability in childhood. And then the three primary regions of the brain that cerebral palsy affects are the motor cortex, which is the motor part of the brain, basal ganglia, the reward brain, and the cerebellum, the part of the brain responsible for movement. Now I'm gonna pass you to Taylah, and she's gonna tell you a little bit more about her condition.
Taylah, what is it like living with cerebral palsy? It's a lot more difficult than people might think. They think you can just learn to walk. At least that's what I've been told.
But it's actually, takes a lot of time, effort, and skill, a lot of bad skill. My disability only affects my legs, and a bit of my arms, and my balance. Yeah, that makes sense.
But, yeah. So, are you able to move your legs at all? Yes, I am able to move my legs. I'm just not able to walk, or kick, or run, or jump.
Yeah, yeah, that makes sense. So, how do you primarily get around? My wheelchair. I have a power chair and a manual chair, but I mostly use my manual chair, because the power chair is super huge.
Can't get around places as well as the manual chair can. That sounds like it would result in a lot of really difficult challenges, like trying to go into different restaurants, or other places. Well, restaurants are not really the problem.
It's mainly houses that are the problem, because most houses are built in the 1960s, or 40s. But they'll build all these paths to make houses ADA compliant, I believe in 2019 or something, like that's so very recent. Yeah, yeah, that sounds like it would be really challenging to deal with that.
So, maybe to ask you, because the viewers listening probably have never met someone with cerebral palsy. I'll start with that. What's one thing that you wish the whole world knew about cerebral palsy? That we are not, to not infantilize us, we are not infants, you don't need to talk to us like babies, we understand what you're saying.
I've got that a lot. Real? Throughout my life, yes. It's a very big pet peeve of mine.
I remember this one time, I was in middle school, and me and my friend were at the lunch line, and this girl came up to me and her, and started asking her questions about me, because she assumed I couldn't talk or anything. That's a terrible assumption to make. Yeah, I've had that a lot.
I've had that a lot. Things like that happen a lot in my life. I'm sorry to hear that, that people, people who didn't understand the condition would treat you differently like that, that sucks.
Yeah, and I also get told that I feel bad for you because you're in a wheelchair. I don't ever want someone to pity me just because I'm in a wheelchair. I can do the same things that a normal person could do, it's just more challenging to do it.
Yeah, it seems like it'd be really exhausting to deal with that every day. Plus on top of the physical aspects of that, my body, how my therapist explained it, is my body ages more than I actually am. Oh, really? Because of the cerebral palsy.
Oh, because of cerebral palsy? And the stress it puts on your body, the strain it puts on your body. That makes sense, yeah, that makes a lot of sense. So sometimes I feel like an old person because I have back issues.
Ouch, I'm sorry. Yeah, I feel like I'm in my 60s sometimes. Jeez.
With my back issues. Yeah, yeah, I'm sorry, I'm sorry to hear that. I make that joke a lot around my friends and family, they find it so funny.
I cope with dark humor. Yeah, yeah, I can relate to that. Yeah.
So what do you think would help bridge the gap of understanding between people who can move around and are able-bodied, for them to really understand what it's like to live in a wheelchair? More patience and asking how, asking what it's like, and trying to put yourself in that person's shoes. Yeah. What if they're not the same shoe size? Yeah, I could see that.
The joke is right there. You had to make it. Yeah.
So what kind of mobility? You mentioned you have some restricted mobility in your arms as well? Just a tad. Like I can't, okay, so you know how you can normally like put your arms flat? I can't do that. You can't put your arm flat? Like look.
Yeah. Oh, okay. It's like in the wrist area.
Oh, in the wrist. Yeah, I see what you're saying here. Some in the hands sometimes.
It just depends. But mainly my hands are fine. Does it make it more difficult to hold things? No, it just makes it more difficult to get my nails done.
To get your nails done. Yeah. Every time I go to the nail salon, I'm like, hey, so I have cerebral palsy, so if you have any issues with my nails, just let me know.
Yeah, yeah. So one thing I was really curious about, do you, are you able to exercise like with your upper body? Yeah, I do therapy, which is kind of my form of exercising. I wish I could actually like go to the gym and exercise, but I cannot.
I know a lot of people that go to the gym and they make it seem so fun. Like I wanna go with my friends to the gym, but I just can't. Well, you know, I've heard of a gym nearby, I can tell you about this later, that can help assist people who have different disabilities to get a workout in.
Really? Yeah, yeah, I learned about it. There was this butterfly festival like a week ago or two weeks ago, and it was really cool. They showed me videos of what they do at their gym.
They have all kinds of specialized equipment to help people with various motor disabilities. Have you ever thought about trying something like that? That'd be interesting to try, and I'll have to let you know how it goes. Yeah, yeah, I can find more info on it and send it to you after this.
Thank you so much. Yeah, so overall, like what are your hobbies? What do you like to do? I like to read, write, and crochet. Crochet, that's cool.
Yeah. What do you make, crochet? I like crochet bags, crochet hats, crochet just, what do you call them, coasters. Coasters, yeah, that's really cool.
Yeah, I'm thinking of making my nana one of these. If you're listening, nana, sorry for spoiling you. Hear that, nana? You have some crochet gifts headed your way.
Yeah, you do. You said six pieces, so there's gonna be six just in a box. So are you able to crochet for long periods of time? Yeah, although I'm worried about getting a car full time because I've heard that happen from YouTube.
It can, yeah. I also crochet as well, and over time, if you do it for too many hours at once, it really hurts the wrists a lot. So stretch them out.
Yeah, I was trying to make a crochet top for my trip that I had to Mexico. It was a cruise, and it hurt my wrist so bad. I had to stop in the middle and didn't get to finish the project.
Jeez, that sounds painful. Yeah, it was up here and back here. So I would imagine that in your life, you'd probably use your hands and wrists a lot more, right? Yeah, actually, I got a procedure done recently, and my doctor said I have strong biceps.
The amount of times I compensate for my legs by my upper body strength. So when you get in and out of the chair, are you able to lift yourself, or do you need assistance? I lift myself with my arms. With your arms, wow.
I can't do it with my legs. Yeah, that makes sense. So I bet over the years, you got really strong arms.
Yeah, and then I got weaker over a period of time, but then I got back with my arm strength. Wow, yeah. I owe that to my therapist.
Wow, that's awesome. The therapist can make such a huge difference. She used to be my therapist, but she quit in like, what, May? Well, not quit, but she is moving to Colorado, I think it is.
So now I don't have a therapist, but I'm hoping to have one by August. Yeah, I hope you can find someone. If not, I'm switching to a different company.
Yeah, I hope you find someone who can help with that. So you've had a lot of huge benefits from physical therapy? Yes. That's good to hear.
But a lot of negatives as well. Oh, really? Like what kind of negatives? When you switch companies, it takes like a good long while. I think one was like two months to have therapy.
And when you don't have therapy for that long amount of time, you digress. And then I also had therapists who didn't really do anything but stretch me. And that doesn't really help.
Yeah, because you're trying to build strength, right? Yeah. To be able to assist in your daily life. Yeah.
And I also had therapists that cut back on my time. So instead of like an hour, which is what I'm supposed to be getting, I would get 30 minutes. So that kind of like, but the therapist would say it's like, would say it's still the amount of time.
So like they kind of scammed the- Wow. Seriously, I would have never guessed that from a physical therapist. Yeah, but- That's crazy.
Do you think those types of problems are mainly from like insurance and that kind of stuff? No, I think it's just the therapist. Oh, you think it's on a therapist basis? Well, because with the stretching part, it was all because of the therapist. Like that wasn't anything insurance did or anything.
Yeah, yeah. So my next question, I was wondering, have you ever lived on your own before? And if so, what does that look like? If not, what are your plans for getting around and that kind of thing? No, but I do plan to get my own apartment in October. I'm super excited about that.
That'll be awesome. I'm gonna be living with a roommate, my best friend actually. Aw.
Wow, that'll be fun. Yeah. I hope you'll still be best friends after you live together.
Hopefully. Have you lost a best friend by moving in with you? I've heard stories, so just be careful. Like you don't know anyone until you actually move in with them.
Honestly, that's true. Like moving in with someone really tells you a lot about who they are. But we've been friends for like a while, a good long while.
A long time, yeah. So I think I know her pretty well. That'll be really cool.
Yeah, but my plan is basically just transferring like I do now. Mm-hmm. But with less help, you know? Yeah, yeah.
And I know, Mama, if you're watching this, I know you have concerns, but I promise you, like, I can do it. Sounds like you're ready for a life of independence. Yeah.
Yeah. That must be pretty exciting. Yeah.
Oh, the only thing- Are you mostly excited or a little bit scared or? Yeah, I'm a little scared, but mostly excited. The only thing is, is I don't want to disappoint my family members. So I'm hoping this works out.
Yeah, yeah. I'm sure they're hoping it works out too. Yeah.
It's a hard step to see your child growing up and becoming independent and becoming a young adult. I bet that's hard for them. Yeah.
It's really hard for them. And I don't think my grandparents truly believe I'm moving out, so that might be a- Whoa. If you send them this podcast, they might be a little surprised.
They're gonna be like, why didn't you say that on the podcast? What? But I've told them, so it's not anything new. So, since you can't get around super easily, then you can't drive, right? No, but there's things called adaptive cars. Adaptive cars? Where they put, well, not adaptive cars, but they can adapt the car to your needs so I can learn to drive.
But I'm kind of scared because I've been told that, because I have this jumping thing when I get scared, I've been told that that's gonna hinder me in driving. But I'm trying to get that under control so I can actually get my driver's license and get driving. Yeah, that would be really exciting for you to be able to go different places all on your own.
Yeah, and at this point, I take DART a lot of places. DART? But sometimes DART leaves me. Can you tell the viewers what DART is? It's basically where they pick you up from your house and take you where you need to go.
And then it's basically like how I explained Uber for disabled people. Wow, that's neat. Yeah.
So how does that transportation handle your scooter? There's a ramp and you just go in and go, you know buses, like how they have the little- Okay, so they- It's like a bus. They can kind of push your wheelchair up the ramp and then help you- Inside the car, yeah. Wow, that's really cool.
So anyone listening to this, this is a really good example of why it's important to have infrastructure for transportation, buses and that sort of thing. A lot of people, when they hear about buses and trains and all that, they're like, oh, why don't we just drive everywhere? Or they don't really see the importance of having a city infrastructure. But from what you're saying, it sounds like that's a kind of a crucial part of your life.
Yes, yes. The only issue I find with it is sometimes they leave and sometimes they're late. So keep that in mind.
Have one of them ever driven away before you got- Yes, yes. Does that happen a lot? Yes, or they're extremely late. Like I was at my job the other day and then I called DART to come pick me up, right? And they said they're gonna be an hour late.
So I had to stand there in the heat just waiting for DART to come pick me up. God, for context, we live in a place that sometimes can get up to a hundred Fahrenheit. It was- That sounds terrible.
It was 102 that day. 102 and you were out there for a whole hour? Yes. Do you have to carry with you like emergency sunscreen? I had like my stuff on the back of my chair, like my handles.
And can you reach it? Yeah, I can reach it, but I didn't have sunscreen with me that day to reapply the sunscreen. But good thing about me is I don't burn a tan. Hey, that's pretty great.
I can see how you could get stuck in the sun a lot from that situation. Yeah, I was miserable. Ouch, God.
So if you're a DART driver listening to this, please be on time. Please. And please, please don't come at me.
Please be on time and don't leave before you pick people up. Please. And have the correct time.
Don't show up early. Don't, yeah, don't show up early either because then nobody can follow the schedule. Yeah.
Well, to be fair, it's not the people, it's not the state we live in that's making the schedules. It's, I think it's Washington or something like that. Oh, really? It's a federal schedule? Making the schedules for every state.
So maybe they don't know like our timing and things. Yeah. This definitely seems like it should be a solvable problem.
Yeah. Hopefully they solve it soon. Watch them see this podcast and it's like, wait, I know her, I picked her up.
You know, there might be people listening right now with cerebral palsy as well. Yeah. That's one of the main reasons I wanted to do this podcast so people know they're not alone and feeling a certain type of way about certain situations.
Yeah, yeah. And maybe, ideally, maybe this episode could help people feel more confident in themselves too. Yeah, I've had a lot of unconfident moments in my life.
One that stands out to me is when in elementary school, I'm not going to say the elementary school because that'd be- You don't need to. Yeah. But in elementary school, they thought I needed to be in special ed.
So they put me in special ed classes, which made, because I was in a wheelchair, which made me behind in like school. So they just assumed they didn't test you or anything? They, no, they didn't test me. And then when they did test me, they were like, you don't need to be in here.
That's crazy that they would make those assumptions. Yeah. And then I also had this one teacher who refused to take me to the bathroom.
So- That's horrible. I'm sorry. So then I would pee myself.
That's horrible. I'm so sorry you dealt with that. This was all the same elementary school way.
It's crazy to me how many elementary schools will like literally prevent students from going to the bathroom. I also had that experience too. No, but like- They would literally not let anyone leave the room.
But in your case, that would be so much worse. I needed assistance. You needed someone to help you get there.
And the person that would give me assistance would only have a set time of schedule. And if it wasn't that time of schedule, I couldn't go to the bathroom. That's crazy.
So you can't just like raise your hand and ask them to help you take you to the bathroom? Not until like I'm in my other elementary school and then middle school and high school. That's wild to me. All right.
So this is a good example of systematic change that needs to occur. If an elementary school student has cerebral palsy and needs to go to the bathroom- Or any disability. Or preferably any student needs to go to the bathroom, just let them go.
Like that also seems like a solvable problem. I think it's because the teacher secretly hated me. Oh, really? You think that? I don't think it's personal.
She followed me to middle school and then she was fine. So I don't know. Watch her be watching this if you like.
She's like, I never hated you. You should have been dead against me. So how else do you think cerebral palsy affects your life in general? Um, I take longer to do things.
So for like on a schedule, you have to wake me up like three hours earlier to get to that place on time and do that on time. Also, I know like some of my family members don't understand, like a lot of them just don't get it. Like I'm trying my hardest to- You're probably putting in a hundred thousand times more effort to do the same things that other people are doing, right? Yeah, and then some, not to call out my grandmother, but she won't let me do half the things I need to do.
Like she's too worried about me falling and stuff. So you don't want people to try to protect you. Yeah.
I want to be able to do it on my own. I just don't know how to set that boundary since I feel like I need to help my whole life. So it's kind of hard to tell the people that like help me, no, no.
Yeah, that would be really tough from their perspective too, because they probably have been, you know, they're used to helping you. So it would be probably pretty surprising if you start becoming capable of doing things you couldn't do before. Yeah, and my sister said this perfectly, that I let my grandmother do a lot of things for a lot of years of my life.
And now that I'm trying to do it, she doesn't accept that. Grandma, I know you're going to watch this. I'm so sorry.
Grandma, we're your biggest fan, okay? Both of us. I love you. I'm so sorry.
And I think this really captures kind of a bigger pattern too of growing up. Parents get so used to helping and protecting their kids and they have to let go a little bit more as they get older. Yeah, I don't think she knows how.
It's hard. It's hard for, a lot of people can't do that. They just, they don't know how.
Yeah. But you know, imagine this, once you have your own apartment and you can take care of yourself and do all these things independently, she's going to look at that and she's going to just feel so proud of everything that you've done. Honestly.
I hope so. And then you, you'll be able to feel that internal pride within yourself too. I struggle with that a lot actually, internal pride, because I feel like I should be doing more than I actually am.
Yeah. It's hard to get past that, the feeling of insecurity that you should do more and more. Yeah.
It's tough. I feel like I should be in a different area, like not area, but a different ability in my life. At this age, for context, I'm about to turn 18.
18, yeah. Yeah. Yeah.
The tricky part is especially when, in terms of disabilities, ability is not always correlated with age. Yeah. And that's hard for a lot of people to accept and understand too.
Not only is it not correlated with age, but it's also not necessarily correlated with how it looks either, like that teacher who put you in special ed, even though you didn't need it. It's hard for me to accept it, more than my, well, I'd say some family members, it's hard to accept, but some of them are accepting. Do you think it's really hard for people to understand how much effort internally it takes for you to do things like moving around? Yes.
Yeah. And how much physical effort it takes. It takes a lot of my energy to do certain things.
Like I remember I just graduated for context. I remember on my senior field trip, we went to Shenanigans and we were in like the lounge area. What is Shenanigans? It's like an arcade place.
Oh, an arcade. With bowling. Oh, bowling, cool.
And arcade together. We went there and I wanted to sit on the couch with my friends. So I transferred, but that transfer took a lot of my energy out and then I didn't feel like doing much for the rest of the field trip.
Yeah, for the rest of the field trip, yeah. So even smaller movements are a lot more effort for you then. Yeah, because it takes a lot of my arm strength to do most of my transfers.
Wow, so you're having to lift yourself up a lot then every day. Yeah, yeah. I bet over time that your triceps would get pretty shredded as well.
That's what my doctors... Yeah, like you're basically doing dips constantly. Yeah, or pull-ups. Or pull-ups, yeah.
Yeah, and I also have a hard time with my core. So like sitting up. I can stay up, I just can't like... Sitting up is very hard for me.
Is it from the fact that you can't really use your legs a lot? No, it's from my cerebral palsy. Oh, from cerebral palsy itself. So it affects your abs too? No, my core.
So like the thing that keeps you balanced. Yeah, that's the abdominal muscles. I think you said that in the definition.
Okay, so it affects the abs too. That's something I never would have guessed. Yeah, I don't really know.
But I know it affects like balance and stuff. Yeah, oh yeah, balance and coordination, yeah. Yeah.
So do you ever get like vertigo or anything like that? Do you know what that is? No. No, I'm glad that you don't know what vertigo is because it's not fun. But like what kind of balance stuff does cerebral palsy affect? Like sitting, standing obviously.
And like just a bunch of things like that. I can't really think of others, but there are others. I just can't think of them right now.
Yeah, yeah. So do you ever feel like, when you're sitting in your chair relaxing, do you ever feel randomly unbalanced? No, because I have this back for those of you at home, the back is molded to my... Oh, it's like a back pillow? No, it's molded to my body. Oh.
So it sits perfectly on my body. So what is it exactly?
It's a molded back for the chair.
Oh, for the chair, okay. Yeah. So it molds perfectly to your spine then? To my body.
To your whole body, to hold the floor. And also... That makes sense. My feet is molded.
Look at him. We're both laughing because my dog just started sniffing around her wheelchair, smelling her dog. As soon as we started talking about the wheelchair.
As soon as we started talking about it. He's like, let me check this out. I think he's never seen this before, but he's probably excited because it smells like other dogs.
He's checking out my wheelie bars. He's like, one of these little tiny wheels. That's funny.
That's really funny. Your dog is super cute. Thank you, thank you.
So if you were talking to another person, like let's say right here next to you who also had cerebral palsy. Well, yeah, I'm here, but I'm saying someone else who also had cerebral palsy. Do you have any like advice that has helped you in your life? I actually had a conversation like this with my friend who also had cerebral palsy.
Really? She's actually, she modeled for a couple things as well. But I told her, well, actually she gave me advice. Oh really? Well, what was her advice? She said something like be patient with yourself.
It's not always going to turn out the way you want it to and just take your time and don't let other people get to you. That's a hard one. Don't let other people get to you.
Yeah, because I told her about the story with like in middle school, the story in middle school, and she was like, don't let that get to you. I can't because that it's like stuck in my brain. Yeah.
And it's terrible. I remember, I think I talked to my sister about this when you text me about a speech you were doing and she was like, you should say infant. She said that sounds like infantilizing someone.
And so that's why I text you in the speech. Yeah. For infantilizing.
Yeah, to make sure that people don't infantilize you. Yeah. They also think I can do a lot less than I can actually do.
I can do a lot more than people think. So people's assumptions about your disability are very frustrating? Yeah, they're very upsetting, especially when they come to like friends, like new friends. It's like, I thought you knew like me and my, my disability just to find me.
But as time goes on, I'm able to explain that to them. Yeah, yeah. That sucks that people make assumptions about who you are and the needs that you have and the things you can and can't do just from the fact that you sit in a wheelchair.
Yeah. They also feel bad for me. So they ask to help me with things that I don't need help with.
And it's like, no, I'm good. I don't need a stranger to. That must be really annoying.
Yeah. And it's really annoying for my friends, too, because they know what I'm capable of. And they just want to see me succeed.
Yeah, yeah. To some extent, you know, the more people can encourage you to build that independence, the better off you're going to be. Yeah, I find with encouragement, it's like there's a fine line between encouragement and annoyance.
Like telling me how to do something that like I, I do every day. Yeah, it's like annoying, but like encouraging me to do it is like totally different. Yeah, yeah.
Being kind and polite in your encouragement. I find that I find that issue with people with like family members who are trying to help. They explain like, you should be doing it this way, not calling any of you.
You know who you are. You know who you are. And if you feel offended by that, I'm so sorry.
Just text me. Don't. I love how open you are in this podcast, Taylah.
Yeah. Seriously, the more you share this type of stuff with the world, the more people can look within and change within themselves to find new ways to encourage people in a healthy way to become more independent. Yeah.
And I know that you're trying to help, but it really comes up as annoying. I'm really grateful. Yeah, I'm glad to hear that you're grateful about all the ways that people have helped you in your life.
That's awesome. But I do get frustrated a lot with the people in my life. Yeah.
About like different aspects of my disability and also other aspects of life. If you could wave a magic wand and have them understand something, what would that be? What it is like to live with a wand. Like how much how much it takes a toll on your body.
I always think of this. I wish that everybody that doesn't fully understand. Well, obviously no one's going to fully understand.
But I wish that everybody in my family could have cerebral palsy for a day. I know that sounds messed up, but just to understand how I feel. To understand how much effort and work you're putting in.
Yeah. And to understand how exhausted you feel too, right? And my physical therapist, not a counselor, has helped me understand my feelings more about my disability than anyone else has. Like the therapist that I recently had.
I owe a lot to her and I miss her so much. I know she's going to be watching this podcast. So hi! That's pretty awesome words from Taylah.
Sounds like you're a great physical therapist. Taylah, if I need other people who might need a physical therapist, can you send her to me? Yes. Although she's not in our state.
Oh, she's not in our state. Okay. Yeah.
Yeah. Unless you meet someone in Colorado that needs a therapist. But she's only a pediatric.
Oh, only pediatric. Okay. Well, you know, maybe someone listening has kids with different motor disabilities and lives in Colorado.
And if so, I'll be texting you. Hey, who's that awesome therapist you mentioned? I think it's Colorado. It's one of the C states.
Yeah. Okay. Maybe that's what the therapist stands for in physical therapist.
Yes. No. Telling her your problems? Yeah.
Yeah. She, she gives great advice, although I might not listen to it always. Oh, burn.
So she knows. Oh, well, I bet that it's been a joy for her to see you grow over the years. Yeah.
She started when I was a freshman in high school. Cool. And she was with me throughout my high school years.
She also helped me walk across the stage during graduation, which was one of my dreams. That's amazing. Congrats on that.
Yeah. So what are your future plans? Like, what do you want to do? I want to be an author. Well, author is my A plan.
But, um, journalist is my B plan. So I'm going to go to community college first to get my associate, and then I'm going to transfer to a university. That's a great plan.
Yeah. And actually you helped me fill out the college application. So thank you.
Did it work out? Yes, it did. It did. High five.
That's great. Oh my God. We did it.
It took forever. Yeah. Yeah.
It's like you need a degree. To get a degree. To fill out a college application.
That's crazy. The technical difficulties we had were not fun. Yeah.
So are you able to, like, type on a computer? Yes. Yeah. I, I, I can't write as well.
I write very slow. So typing is my best bet. That's awesome.
Which I hope they can accommodate for in colleges. I feel like if you tell them that's something that would help you, there should be some way you can sign a form for accommodations and they can let you do that. I know, like, high school has accommodations, but I don't know about college.
College would, if anything, have more accommodations, I think, than high school. If someone sees this and knows, please let us know. It might also depend on the college, too.
Yeah. Yeah. I think you know what college I'm talking about.
Okay. Yeah. I think they would have accommodations.
I might have to look at- Really, I would be shocked if they didn't, honestly. Because they asked about, like, they asked about if you have a disability, but I think that's just, like, to make sure they have equipped stuff for me, but, like, not accommodations. But I don't know.
They should have a whole team for that at a college. Most colleges do. Oh, see, I think I go on one of these Saturdays.
I'm gonna have to check my schedule, but I go on one Saturday. Are you gonna tour it? Yeah, and also sign up for the classes that I need to sign up for. Perfect.
Perfect. So you're starting soon? Yeah, August. August.
Cool. Wow. It's currently June.
It's coming up fast. Yeah. That's crazy.
My birthday is also in August, so a lot of things happening in August. Are you excited or scared to go to college? I'm excited. Plus, I'm not living in college dorms, so it's, like, easier, I guess, to transition to high school from high school to college since I'm not gonna be living at the college, and the college is pretty close by.
That's cool. That's cool. So when you're living on your own in college, do you think you'll be able to make meals and that kind of stuff? Yeah, I actually toured an apartment.
I don't know if I told you this, but I toured an apartment, a wheelchair accessible apartment, and they have counters like that to where I can, like, low counters to where I can, like, cook and stuff. And they have low stoves, too? Mm-hmm. It's low everything.
Wow, that's neat. To accommodate for the wheelchair. The only issue with the apartment I was looking at, and I'll tell you what apartment it was afterwards, was they have, like, big metal doors.
And you know how, like, normally in hospitals they have the handicap sign? I'm wondering if they can add that to the apartment, but I think my, what's it called? Maintenance person that works at my chair said if you ask for that before you go in the apartment, before you get accepted, they might not accept you because you're causing issues for their... Yeah, maybe wait until you get in the apartment and then see if maintenance can help you. But I honestly don't know why that would be causing issues. Yeah, I don't know why either.
I'm sorry. Unfortunately, a lot of people and a lot of, like, organizations even have ableist tendencies. And I can imagine for you how frustrating that would be.
Yeah. And then there was also this other apartment that I looked at that just, they advertised themselves as ADA compliant. They have elevators, but no wheelchair accessible apartments.
So it's like false advertising. Wow. Yeah, I was kind of shocked.
Like, I could get through all the doors, but I couldn't, like, reach anything. Yeah. And they told me they'd call me back, but never did.
So I had to do a follow-up on the... You mentioned you have a maintenance person for your wheelchair. What kind of maintenance does your chair need? I'm getting, like, a whole new type of chair, except for the exterior. Because insurance won't pay to get a brand new chair unless it's five years old.
But they will pay for an upgrade. Oh, they'll pay for an upgrade? So it's basically replacing everything but the frame. Okay.
Which is kind of ridiculous, because I feel like if you're going to do that, you might as well replace the frame, but they won't let me unless it's five years. I think it's, like, we got it in 2023, so we got, like, I think... So you have a few more years. Two more years.
Yeah. Until I can get a new chair, but, yeah. Sounds like a lot of insurance-related rules.
Yeah. I have my own vendetta against insurance. You and me both.
You and me both. I know you pay for my stuff, and it's, like, basically free, but I kind of need this, so... So in your opinion, if you could, like, change anything about the world, like, as the way the world currently is, to make it easier for you living with cerebral palsy, what would you do? I would probably, like, make it mandatory to have, like, disability understanding classes so that not everybody lives in ignorance, because ignorance is not a good thing. Yeah.
Is it exhausting to try to educate people over and over again? Yes. I've had to educate some friends, which I know come from a good place, but some things don't come from a good place. They just come from a bad place.
People being malicious? And I've experienced bullying, and I feel like it was because I'm an officer that they feel like I'm being a bully, like... That's horrible. Yeah. But I feel like everybody has experienced bullying once in their life.
I don't know. I mean, maybe people listening here, that might be truer. Yeah.
Unfortunately. Yeah, I remember it. But I don't know about everyone.
I mean, that may be, like, a broad statement, but, like, I feel like it happens more often than not. So what do you do in cases like that? Someone's bullying you from being in a wheelchair? Well, recent? Well, as I got older, that happened less and less. That's good.
I just choose my friends carefully now. And I do get heartbroken by a couple friends, but it's not like what it was. Yeah.
Yeah, that makes sense as you get older, that you'd have more independence to set boundaries. Yeah, I'm not good with boundaries. That's the hard part, Taylah.
Yeah, I think we talked about it before. You've got to be really strict about boundaries. We were like... My mom... I'm a people pleaser, is the issue.
My mom's the one I have to stop. She's not wrong. Yeah.
I'll put it like this. You can't make everyone happy. Yeah, but that's something I try to do over and over again, and it just backfires.
It might be. And the other thing is, unfortunately, a lot of people will act like they want to understand, but then they don't. And that's another thing that's frustrating to deal with, I bet.
It really is. Yeah, it really is. Yeah.
For the people that do want to understand, what do you think that most people are most ignorant about? Not every physical disability has a neurological disability attached to it. Yeah, you can be physically disabled and still be neurologically capable, right? Yeah, not saying that neurological disabilities are bad. They're not bad.
Don't take that the wrong way. Just clarify it. Yeah, yeah.
No, that makes sense. You don't want people making false assumptions about you. And some disabilities do have both, but you just gotta gauge which ones do and gauge which ones don't.
Would you prefer if people were to ask you that instead of assuming? Yeah, actually. Or ask me, how does your disability work? What is it? Mm-hmm. Or if they already know about it, they can just ask me if it's neurological and physical or just physical.
Yeah, yeah. So you'd be totally fine if people come up to you and ask you about the things you can and can't do. Yeah, just as long as it's not a weird time.
Yeah, obviously. I've had one person do that before, and I was like, I'm in the middle of eating. They weren't trying to get you to answer while eating? Yeah, I was hanging out with a friend, and then this person came up to me and was like, hey, I have a couple questions.
And I'm like, um. And then you're trying to respond with food in your mouth. I was like, no, it's not the time.
So use tact when you ask people. Yeah, I don't think they caught on to the- I doubt it. I doubt it.
Yeah, I think my friend and I were just so confused. They sat there looking like, what do we do? I was like, that's really funny. And it was someone I didn't know.
It's like a complete stranger. Have you ever thought about doing comedy, Taylah? No, but I have been told I'm quite witty. You might want to think about it.
You might want to think about it, because I can see this is going somewhere great. The comedy? Thank you. You just share your everyday stories and make it a new comedy story.
I'm like, so this happened on Friday. Yeah. So how do you think the world would change if everyone, like you said, had cerebral palsy for one day and totally understood what it was like? Well, I think they would be more understandable, more patient, more kind, and just- Yeah.
Understand it more. Yeah, patience is a tough one. Yeah, my grandmother has none.
Sorry. I feel like I'm roasting my grandmother in this podcast. I don't know if that's completely true, but- It is completely true.
But grandma, regardless, thanks so much for all your support. And all your jokes. You're the butt of the joke.
See, this is what I'm saying. Maybe you and your grandma could do a comedy skit together. Yeah, I think she'd have very funny stories to tell.
I bet she would. I bet she would. So I think it's approaching the end of the podcast, but I want to ask you one last question.
Has something ever happened that was really funny, like when you were moving, transitioning from one place to another or anything like that? On one Halloween, okay? On one Halloween, my mother was pushing me because we were getting candy. And I think it was Halloween. Yeah.
I can't remember exactly. But we went over a curb and I fell out of the chair. Oh no.
And then my mother saw something fly out of the chair. She asked, are you okay with that? And I said, my dignity. What did you lose? I lost my dignity.
Comedy skit confirmed. And then we had, later in August that year, we had a joint party because me and my brother's birthdays are both in August. We're like a year apart.
We had a joint birthday party. And we had the guess who question where you'd pie somebody in the face if they got it wrong. And my mom used that same thing that I said.
She was like, what did Taylah say when she fell out of her chair? My Mimi got it wrong actually, but then- She got pied in the face? Nana got it right. I got to pie her in the face. It was great.
Sorry, Mimi. That's a great idea. You're giving me ideas for like a family game night.
Yeah. Buy a bunch of pie. Ask questions about the other people.
Actually, I think it was whipped cream though. But like, you should do it with pie. This is a great idea.
And if you do, text me and tell me how it went. That is hilarious. Have it be a game show.
Just- Who knows more? And whenever they get the question wrong, just have like, you know, like game where- Pie isn't coming. Pie isn't coming. Oh, blueberry pie too.
So their nose is blue. Oh my god, that would be crazy. Well, Taylah, thank you so much for sharing your story on podcast.
I really appreciate it. Thank you for having me. Is there anything else you want to tell people listening? Be more patient, please.
Please be more patient. Please be more patient. And if you're not, please learn some patience.
Learn to be patient if you're not patient. And this goes with anybody. Oh, yeah.
Not just people with cerebral palsy or any disability. I don't see a downside to more patience in the world, to be honest. Yeah.
Except maybe- And more kindness. Yeah. More kindness and patience.
And don't have road rage. Yeah, no road rage. You know who I'm talking to.
I'm talking to specific persons and they know. Yeah, you might want to help for your road rage issue. I hear meditation helps.
I'm sorry I had to. Because I remember this. Okay, now I'm just outing who this person is.
No, don't out them. I remember- Okay, I'm just going to say a family member was picking me up from school. And, okay, a person got in front of them, right? And she came out of the car and started cussing them out as they were driving away.
Wow. It's really bad. And that wasn't even on the road.
That was just parked. So maybe more patience in traffic. Yeah.
That'd be nice. And drive safer, please. Yeah, please drive safely and give yourself and others way more patience.
Unless they're an asshole, then just go for it. Words of wisdom, Taylah. Yeah, anytime.
Well, thank you, everyone, so much for listening. And if you have any questions, I can feel free to ask Taylah. Or we can do a follow-up.
Or we can do a follow-up podcast if you're up for it. I will always be up for it. Aw, cool.
Anything to help you. Well, thanks, everyone, so much for listening. And Taylah, thank you so much for sharing.
Thank you for having me. Bye.