PhD, Power Chair User, and Podcast Host with Tye Martin

PhD, power chair user, and host of his own podcast TyePod, Tye Martin talks growing up with Duchenne Muscular Dystrophy, accessibility and why the disability hierarchy needs to go. We get into caregiving, independence, the Medicare/Medicaid nightmare, and what it looks like to bring a disabled perspective into biomedical research. 

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Transcript

Welcome And Meeting Ty Pod

SPEAKER_00 0:13

Welcome back to another episode of Sick I Swear. I'm your host, Caitlin Roadie, and I have another podcaster on my show today. Ty Pod is here, and he is here to share disability advocacy, chronic illness stories, getting the word out and really furthering the voices of the disabled spaces. And it's so good to have you here. Thank you for joining me. I know a little bit about you, but I want to know much more about your journey, where this all started, and kind of what you're diagnosed with.

Duchenne Muscular Dystrophy Over Time

SPEAKER_01 0:46

Right. Well, it's um it's Duchin muscular dystrophy, is what I I have. And interestingly enough, I I didn't, it wasn't confirmed until like the last couple of years. And I've had symptoms going all the way back to when I was seven or eight. You know, there were some muscle weakness signs when I was young at that point, and then it sort of slowly progressed with, you know, over time with muscle weakness and you know, some falls and losing leg function and eventually needing a motorized wheelchair, you know, and and I was using that around fifth or sixth grade, so starting middle school.

SPEAKER_00 1:20

What so there is a bunch of different types of muscular dystrophy, correct? What one do you have again? Say it again.

SPEAKER_01 1:25

So duchin is the one that that I have.

SPEAKER_00 1:28

So what's that compared to like other like what are the symptoms and what does that look like?

SPEAKER_01 1:34

So with a lot of, and I want to say there's like 40 related neuromuscular diseases in that space now, but um most of them have a mutation that they don't have a certain protein, you know, that's that's really important to muscle structure. And so, you know, there's this muscle sort of wasting that happens, and it it does look different, even if you have the same diagnosis between two people, that progression might be slower or faster, or you know, we might look a little bit different. And the thing with with most of them is there's no treatment really, and no, obviously no cure. So it's all about trying to maintain as much range of motion and strength as you can. Um, and sometimes they they prescribe steroids, which in my case that was actually much worse. So I had to get off of those fairly quickly. Um, so yeah, it's been kind of just adapting and inventing new versions of myself, you know, over time based on where the disease is.

SPEAKER_00 2:38

So you said this started around middle school. How old are you now?

SPEAKER_01 2:42

So I am about to turn, so I'm 36 right now.

SPEAKER_00 2:45

So you started in middle school. How was that going through school and feeling like this?

SPEAKER_01 2:50

So, you know, it for the most part early on, it was just with sports or like physical education classes. I would be slower, you know, and there would be more falls. And that's the falls is what actually led me to needing the wheelchair right away because it was a preventative, you know, and especially when you're in a school environment and you need to switch buildings and go to the playground or whatever, you know, and that became dangerous, obviously, because I could fall and break something. So so I started using um, it was like the three-wheel like scooters that you kind of see in the grocery stores and things now. Okay. So that was the first one I started using, and that was only just when I had to go long distance. I was still ambulatory in small spaces. And then through, I want to say, when I was around 15, 16 is when I became almost completely dependent on a power wheelchair. And that's that's more of the upright-seated chair that you see people using now. So, you know, it it came with a lot of challenges, obviously, trying to figure out like how to get through doorways as a lost strength. And um, you know, like once you get in the building, if there's automatic doors on the outside, there's usually nothing inside. So you're trying to figure out how to navigate

School Access And Everyday Obstacles

SPEAKER_01 4:07

that and time everything, where maybe you catch someone opening a door and you can go through, or you know, there's a lot more just planning and worrying about little things uh for access. Now that was one of the bigger issues that I had.

SPEAKER_00 4:23

The accessibility, yeah.

SPEAKER_01 4:24

Yeah.

SPEAKER_00 4:25

Do you feel like since I don't know, however many years ago, I'm not I'm gonna math that now there's more accessibility, or do you feel like it's kind of just not really changed much?

SPEAKER_01 4:35

Yes and no. I I think I've seen brand new buildings built at a university that had zero push button doors. And I'm I'm sitting there like, how do they go through construction with the ADA and things like that and not have Yeah, like how's that up to code? Right. And so eventually they got it, you know, because I I talked to them, and then some other uh mentors and professors talked with them too, and it was just like you've got to make this accessible. Um and then I I did have a really good experience in graduate school. I have um my advisors then and like one of the she wasn't a secretary, but she was like a student coordinator. They worked on getting push buttons inside the building because I had an office and I obviously needed access to uh there were some biomedical labs and then restrooms, and um, so they actually got push buttons installed in all those locations inside, which is honestly the first time I've ever seen that done. Um, and and it even had the tricky part was you had to keep the labs locked, and so they couldn't just put a button that anybody could walk by and push and go in, you know. So that was they basically set it up where it was a security thing and there was one remote control that would open the doors, and I I had that control. So, you know, that that was really cool. And I think it if there's a will, there's a way if that makes sense. If there's enough people that are willing to try to adapt it, then then it can happen, you know. But it's it's kind of hit or miss otherwise.

SPEAKER_00 6:12

How was it going from ambulatory to full-time? Like mentally, physically, like how was that on you? Yeah.

SPEAKER_01 6:20

Well, it it was so gradual compared to most. Okay. Or like even if if say someone had an accident, right? And then they lost strength or whatever, but but for me, it was almost it was such a part of me growing up as a kid and learning to adapt. I I think by that point it was just like, yeah, it's another another step, you know, and learning to use a new new tool, you know, and and that I don't know, for some reason it it didn't phase me as much. Even though now I look back at it and I'm like, you know, that that actually was a little bit tougher than than what I you know what it was at the time.

SPEAKER_00 7:00

Yeah, like as you were going through it, you didn't like really realize because it was so gradual, but then looking back, like, wow.

SPEAKER_01 7:06

I think I I dug myself into academics so much that you know the mental side was such a focus that the other was kind of secondary.

Why He Started A Disability Podcast

SPEAKER_00 7:18

Okay, so let's talk about your podcast.

SPEAKER_01 7:20

Yeah, yeah. The main mission of it is to bring in obviously people from anywhere in the community of disability, and that can include therapists, nurses, doctors, caregivers. Um, I've had a few different therapists on, you know, like I'm trying to get a little more of a comprehensive idea of disability and access and how different conditions affect different people. So that's that's the the mission of it. And it started out, it's interesting. I I had started doing Instagram social media, doing some visual content, reels and carousels and that kind of thing. And I thought, well, maybe a podcast is in the future at some point, but yeah, it was gonna take in my mind, I thought a long list of things to get to that point. It was interesting. There was um one person, I think her name was Jen Jennifer Kane, and she um I think she has either EVS or or something similar, and she had a uh film coming out, and we were just messaging, and all of a sudden she asked when the podcast was that we were gonna do to talk. And I was like, oh, like maybe this is a good time to try something. So I um I did a real basic recording, and it was nothing like kind of the I say polished, it's semi-polished form now. But that was the first one, and that was the end of the fall of actually last fall, last year. So then after the new year, I decided, yeah, I'm gonna go ahead and give it a shot. Let's see if I can get, you know, invite people, see if they're interested, and kind of just go for it. And you know, it really the response has been really good.

SPEAKER_00 9:02

Okay, so you've only been doing this for a year.

SPEAKER_01 9:05

Yeah, okay.

SPEAKER_00 9:06

With how you've been cranking out episodes. I'm saying, like, I started last fall too, and I have like, well, I have a lot of recordings, it's just like getting the editing end out. I have like nine, like one a month, maybe. And so, like, to you for really focusing on that. I mean, obviously with disability, there's factors that come into place that you know, you you put your focus and energy other places as well. But hell yeah, because you have like how many episodes now?

SPEAKER_01 9:34

Well, I just passed 50. So I I was so ambitious recording them ahead of time.

SPEAKER_00 9:41

Yeah.

SPEAKER_01 9:41

You know, and and like you said, with the editing, like they they build up a lot.

SPEAKER_00 9:47

That's that's the hardest part in in anybody that I talk to when it comes to like even like in content creation too, like it's the editing and right with my disability, you know, like typing is slow.

SPEAKER_01 9:59

I have you know, I have an adapted version of a keyboard and a touchpad, and you know, do all that. So it's like I have to say that AI has actually helped a lot because I can kind of get a format and then use that in my own words, but then it you know will help you just use that kind of benefit.

SPEAKER_00 10:17

Yeah, yeah. When it comes to AI, like I know that there's like a lot of opinions on it, but that is one area where it really can benefit and really help people with disabilities in cases like that.

SPEAKER_01 10:29

I wish I would have had it in graduate school.

SPEAKER_00 10:31

Yeah.

SPEAKER_01 10:32

I was writing, you know, scientific articles and I wrote my dissertation and like you know, I could have used that just for formatting alone. Yeah. And then uh even something as simple as a PDF, but like, say I want to get the text off of it to edit, you know, now I can just put it into Chat GPT and be like, hey, give me the text and I can do what I want. So you know, it's accessibility-wise, it's it's huge. I mean, it's a game changer.

SPEAKER_00 11:02

So would you consider your podcast kind of like an educational storytelling combat combination?

SPEAKER_01 11:09

Yeah, I I definitely I dig into the diagnosis and kind of how people have adapted to that, and obviously touch on the ableism side, right? Like I know it really doesn't matter which disability you have. I think we've all experienced some kind of ableism there. Um, but I also I really want to make it about the the person too. So, you know, things they like to do, whatever their maybe it's their career path, or maybe something cool they have going on. You know, I try to tap into just the human side, right? Because that's lost quite a bit. And so, like that that's been a big deal the whole time trying to show, you know, well, well, yes, this is a part of you, the disease realness, but you know, there's so many levels, so many like unique things to each person, too.

SPEAKER_00 12:00

A lot of layers.

SPEAKER_01 12:01

Yeah,

Misconceptions, Ableism, And Hierarchy Drama

SPEAKER_01 12:02

layers is the right word.

SPEAKER_00 12:03

Yeah. With talking to as many people as you talk to, what do you feel like? I don't know, like, what's a big misconception when it comes to disability, do you think?

SPEAKER_01 12:13

My first instinct reaction is for people to say, well, you can't group all disabilities together, like you, you know, like how could you make that the mission because it's not focused enough? You know, but at the same time, I'm like, well, there is that common thread, though. Like, we are, first of all, we're all humans still with all the things that other able-bodied humans have or want, you know. That's a misconception. I think that you can't you can't group that together. And I even, when I was creating the podcast, it was like, well, you know, you need a focus, you need a you know, a message that's consistent, all that. And I'm like, well, you can have that still, but bring in everybody in the space of disability and maybe try to bring together some of that route because it, I don't know about you, but it seems like a lot of times that's it's so splintered, like and and people almost get defensive about that sometimes. And I'm just like, you know, we're all going through something.

SPEAKER_00 13:16

Has it been on your side of TikTok or Instagram or whatever you're on, the disability hierarchy drama?

SPEAKER_01 13:22

Uh enough to be aware of it a lot, yeah.

SPEAKER_00 13:26

What do you what's your take on it? Because we're obviously we, you and me, we have different disabilities. Right. And in the hierarchy, which for people that don't know what the hierarchy is, it's like actually, can you explain it?

SPEAKER_01 13:39

The the way I've kind of looked at it is like it's based on like the amount of ability that that you still have, right? And so, like, I mean it from a wheelchair stance, I guess you could say, well, say someone's paralyzed waist down, but they have a full-function upper body, like they can do many, many things, you know, that that someone well, like me, and I've had a wheelchair with more severe weakness, you know, like there's no way. I I do feel like there's ableism built into that, right? Like the more the more function you still have, the more ableist you can be, for sure.

unknown 14:12

Totally.

SPEAKER_01 14:13

And some of that's intentional, some of it's not, but but that's kind of how I look at it.

SPEAKER_00 14:16

But I think the root of it is the ableism.

SPEAKER_01 14:20

Yeah.

SPEAKER_00 14:21

For sure. Because yes, there are many different disabilities, and a lot of different disabilities require different needs. There's different like care levels. One person might have this level of care, the other person might need much more care, and vice versa, or treatments, or whatever you want to call it. And at the end of the day, like we all share the common experience of being disabled, and that is a hard thing in life to go through. And regardless of what disability you have, I think at the end of the day, it's disability. And that's not to disregard the fact that there are people that have more needs.

SPEAKER_01 15:01

Right. No, I I totally agree with that, you know, and that that again kind of ties back to the podcast format, you know, is like I obviously ableism is going to be something that's, you know, potentially everybody I I have it on certain things too, you know, even if I'm not aware. And so it's it's a thing where the empathy factor is still important.

SPEAKER_00 15:24

Yes. And sometimes we lose that these days.

SPEAKER_01 15:28

We do, we do. And it's it's too easy. Yeah, yeah. And then I mean, obviously, like comments on social media, they go crazy. You know, many of us have seen a lot of those negative ones. And I don't know, there's still just too much it's too much like readiness for conflict, you know, like people just are looking for it sometimes.

SPEAKER_00 15:49

What do you think is a better way for people to be an ally to the disab disabled community?

SPEAKER_01 15:55

The big one is to just have conversations, you know, with and not like, oh, what's wrong with your legs, or what, you know, like from that standpoint, but like, you know, learning about well, how do you do certain things? How do you, you know, go through day-to-day activities, like and and even like podcasts, right? Like if if more disabled people are part of not just disability-focused podcasts, but just like other parts of society, you know, just I I think bringing bringing those voices in is big and just listening, like asking questions about how you do certain things and kind of that listening and awareness. And and like an example is I've had professors that didn't know that I had issues with where like the the push button door was placed or whatever. Like I've I visited with some and it wasn't they weren't coming from a place of intentional like not paying attention or not being aware. It's how how would you know, or how can you be expected to when you haven't haven't A, dealt with it yourself, or B seen somebody else, you know, deal with it. And so I think that's a big thing is just conversations about you know what's what's going on.

SPEAKER_00 17:15

What does your care look like? How does your day-to-day look like? Do you live alone? Do you live with somebody?

Caregiving Realities And Sudden Health Changes

SPEAKER_01 17:21

My parents are my primary care okay uh caregivers right now, and they they have been obviously for for the entire time. And we we recently moved from New Mexico, we've been there 30 plus years actually, and then and we had family out here, and so we moved, and and so obviously, like the the caregiving dynamic is we had to adapt, figure out the new new home space and making all that work, and um then I've been looking into some outside hired care just here and there, and it's it's been an interesting challenge, and and I know many people have dealt with it for many more years than me trying to coordinate outside care, you know, and and that's that space is exhausting. Finding someone who's consistent, you know, obviously.

SPEAKER_00 18:10

So you have been in the process of trying to find it, or you have had experience with in-home care already?

SPEAKER_01 18:17

So I've had very minimal, but uh I didn't talk about this really yet either. But I I did have a kind of a big, I guess, progression or big loss of function with uh a gallbladder surgery I had a couple years ago. Um and so that required me to be, you know, in ICU and I had to get a ventilator and a tracheostomy and those kind of kind of things. So all of a sudden the dependence became, you know, much more than even like six years ago or five years ago. So that dynamic has changed where now I'm I don't have a lot of outside care, but I I realize that I need to find options, you know, to have if nothing else than an emergency case. But I have had a couple out here since since we moved, and you know, one one of them already left, and then another one had to leave suddenly, and it's a semi-rural area that I'm in. It's an interesting process, I'll just say that.

SPEAKER_00 19:19

How is it being finding like your independence when needing a lot of care?

SPEAKER_01 19:25

Yeah, that that's a that's a loaded question for sure, because that's been a almost a lifelong, you know, constant battle to change and adapt to that. And obviously, like, well, for example, when I was in college, you know, outside of like having to meet caregivers, you know, every few hours with classes and everything, it's it was also like a social thing because I was still living at home and commuting about 40 minutes one way each day to get to the campus, you know, until like anything after classes, any study sessions in the evenings or um really early mornings if there were exams, then it was like, how do I navigate that, you know, and and how do how do I go into the classroom and take care of obviously whatever I need to there from the course requirements, but then you know, all the planning and you know, and and obviously some anxiety for sure, you know, like getting to class on time was and and let me say it's good to have a wheelchair that has some speed because there were a few days, you know, where it was like right at starting.

SPEAKER_00 20:38

Rank it, yeah.

SPEAKER_01 20:40

Yeah. And then then once you get in the buildings, it's like, well, are they what do they provide you with for writing? Do they have a desk or a table or a space for a wheelchair in a classroom? And um, you know, sometimes I would just have to get creative and like I would turn a desk around to make it work, or you know, it was just like all these little I guess adaptations, you know, with everything. And that that's just the college story is like one example. There's countless stories.

SPEAKER_00 21:12

Yeah, I'm

Getting A PhD While Disabled

SPEAKER_00 21:13

sure. Let's talk about your schooling and academics. What because you have a PhD Slay.

SPEAKER_01 21:22

Yeah.

SPEAKER_00 21:23

What did you finish how how long is a PhD course?

SPEAKER_01 21:27

I mean, it it varies, you know, and I think start to finish from bachelor's through getting my PhD. I think I was at university for like 10 years, something like that. And uh yeah, exactly. It went from just taking classes all the time to grad school is more more and more research dependent with fewer and fewer classes, and it becomes more of more of a job at that point, especially like I was able to get funding through a a fellowship through like the National Science Foundation. I got one through them. And so it became more of a career versus just taking classes. You know, so it's not like it was doing the same exact thing for 10 years. It was, you know, becoming something pretty different. Yeah. And I was doing research on um Alzheimer's disease and using computer simulations to try to predict certain things about it that we don't know. And, you know, so that was a very, very, very specific, specialized type of work, you know, that I was in there.

SPEAKER_00 22:34

What school did you go to and what did you end up um getting your degree in? What's your PhD in?

SPEAKER_01 22:40

So I went to uh the University of New Mexico in Albuquerque.

SPEAKER_00 22:44

Okay.

SPEAKER_01 22:44

Um home of Breaking Bad, if I'm sure many people know about that. Yeah. Um and the balloon fiesta, which that's more of a positive side. But no, that's I went to that that university and my degree was in, it was in biomedical engineering for the PhD. And that was I was on my way to becoming a research professor and teaching classes and all of those kind of things. And that's when, you know, obviously pandemic kind of upended everything. Um but then also some of the health advancements, you know, and I'm not gonna lie, I think the stress of COVID probably pushed my body into what led to me not being able to even work anymore, you know, and with with my with my care situation and the ventilator and stuff, it's like I I don't have a hundred hours, eighty hours a week to to give to a job as a professor. And it was just I had to reinvent and figure out like, well, can I pivot to do something productive, something fulfilling that I am passionate about that obviously looks very different than what I was gonna be doing.

SPEAKER_00 23:57

Can you explain to someone like me what exactly biomedical engineering is?

SPEAKER_01 24:03

It's uh it's actually really, really diverse. Like it's it is so interdisciplinary. Like you have elements of of chemistry, but then biology, math, it it's it's just this huge like melting pot of skills and projects. And you know, you have to become fairly aware of a bunch of different spaces to make make it work, you know. And my research was all based on the computer, you know, simulations, which there was more like physics and math kind of involved there too, and computer science. But um, but then you also were having conversations every week with people doing lab work on like say mice, if they're doing experiments there or you know, other other kind of things in the lab, you know, so like that it's really I mean, it's all all tied to health and medicine and making kind of the world a better place from a health type standpoint.

SPEAKER_00 25:07

How do you think that shifts when it's led by people in the disabled space? Do you feel like it takes a different you have like a different perspective? Obviously, you have a different perspective on it.

SPEAKER_01 25:19

I I do, and you know, the interesting thing is for me, I feel like I was a little more creative, you know, and and adapting and like artistic in some ways. And so that's like not always part of the math and science world, you know. So I'd I like to think that it brought some balance. And I think that disability in general, like whatever field we're in, it it does bring some balance, like another way of thinking about things, maybe that it's really nice when you combine it with more of the quote unquote traditional sense of you know what what the degree or what the research looks like, if that makes sense.

SPEAKER_00 26:00

Totally. Was your so was your ultimate goal to become a professor teach it, or what was your goal with this?

SPEAKER_01 26:08

You know, I definitely was was thinking something with the computer modeling simulations related to disease, maybe not, maybe not Alzheimer's specifically after college, but you know, maybe muscular dystrophy like that. That was something in the back of my mind always, like, oh well, maybe I could study my own disease, you know, and figure out a way to to understand it better. So the the research side was where I was gonna go, but then at a university, you always bring in teaching too, like you usually always do both. If you're in kind of one of the science or technology math degrees, and so that that was something I was trying to get more experience with that that was more challenging for me, like a full class of students versus what I I liked kind of a one-on-one, or like three of us working on something at once, you know, but then you bring in a full class, and disability-wise too, like there's a whole nother set of issues there. I didn't have to get too far into all the teaching challenges, you know, when when basically my body was like, Nope, you're yeah, you're done for a little while.

SPEAKER_00 27:20

Okay, so does this fall into biomedical

Assistive Tech And Inclusive Design

SPEAKER_00 27:23

engineering? Like, if you could design one innovation that would be helpful in a disabled space, what would it be? Like, have you ever thought about that?

SPEAKER_01 27:35

It yeah, I did. And in fact, that's my my research had kind of pivoted even just a little bit at the very end to was there adaptive devices we could design, like maybe the hackathon or come up with something that would help, you know, any day-to-day thing. And and one project that was really cool was uh we were looking at uh some way to open or interact with elevators in a better way, because I with my disease, I couldn't reach the buttons, you know, and and especially if they were like really flat. And so figuring out, well, can we make like a robotic thing that would help us press the button? Or if there was now obviously something AI maybe could could be done, but we were we were kind of dabbling in that space a little bit there right before the pandemic. And so, you know, there's that's definitely a part of the bioengineering world for sure.

SPEAKER_00 28:32

And I love that there's a disabled perspective on that because we need so much more representation there, I think. And it's really awesome that you did that and have that behind your belt, yeah.

SPEAKER_01 28:45

Yeah, and like I think that that really highlights something too that's really important of you know, the the user experience, bringing in like talk to the people that are going to be using the technology because you can have the the most amazing state of the art, like Tony Stark type, you know, advancement. But if it doesn't work for the person who needs it, it's what's a it's a total waste. Yeah. And maybe it's something simpler, maybe it's something very, very basic that you can come up with to solve the problem, you know. So I think there's always that trade-off of how fancy high tech do I want it versus is it gonna get the job done? Yeah, yeah. So it was nice to be able to influence that a little bit and be like, no, you got to think about the actual user.

SPEAKER_00 29:34

Yeah, yeah. I mean, because that's who's gonna well gonna be using it.

SPEAKER_01 29:37

So you might that's the expert person, right? On what what that need is.

SPEAKER_00 29:41

Yeah. We might have already kind of touched on this, but what do you feel like was your biggest challenge going through school?

SPEAKER_01 29:48

Yeah, I think keeping the independence. Like, and and it's it's a battle that that I feel like I fight and my family and friends have fought. You know, it's like what's the right balance between, you know, yes, I want to have a career and a social life and do all these other things, but also it's important to take care of the caregiving side or like you know, like the family dynamics, like that's an important thing to keep going too. And so I think that trade-off on how much time do I devote to each thing, like also when you're going to like a social event, for example, if you have a caregiver, they're waiting for you. And so if you're staying somewhere eight, ten hours or something, like it's it's not always feasible, you know. And so you have to give and take a lot on what things you do, and and obviously only certain people fit kind of that like I have to have a certain kind of friend almost to be able to do something, you know, outside the home, which obviously now with Zoom social media, and like I that's been one of the saving things for me, I think, is I've met you know, some of my very, very best friends now on just online in the last three years. And it's you know, like it's it's a balance, but it it's brought, even though it might seem like physical independence is not a thing, like internet and connecting to people online. And I've I feel like I've built back up an independent side of of me that honestly I think we all kind of need to have.

SPEAKER_00 31:31

I think also having the podcast, I think that's a really good way. This is speaking for you, but in my opinion, I feel like that's a really good way for independence because you get to really manage that and have that be your own and have that community built too. And I think that that's a very positive thing.

SPEAKER_01 31:49

I do too. I do too. And and having some kind of some level of control over part of your life is is nice. And then I joke that yeah, I've I've had um podcasts with with people in Canada and Holland and England. Like I I joke that I'm like world traveling, you know, with like right through my screen or something.

SPEAKER_00 32:09

Through technology, yeah.

SPEAKER_01 32:11

Yeah, so that's kind of a unique perspective, I guess, of it. But I agree with what you're saying. Like it brings something that you have control over, you can structure it the way you want. And the nice thing for me is it's basically my own, like I'm my own boss on on that, right? Like I totally I control the style, the format who's on.

SPEAKER_00 32:33

What has been the most rewarding thing

Finding Independence Through Online Community

SPEAKER_00 32:35

when it comes to like advocacy and talking to people?

SPEAKER_01 32:38

I mean, the easy answer is just getting other perspectives outside of my own, you know, which is is pretty huge. And like I I think what's cool too about it is, you know, not everybody is hundreds of thousands of followers, or you know, like that's that's very few of this disability space, you know, and like like we need those, those are kind of like the people on the front lines or something, I almost feel like. But yeah, you know, there's so many stories that that don't get told. And like someone that maybe has a hundred followers or something, or maybe they're not even on social media. Like, how are they gonna get their story to more people? So, like that that's been a really cool thing, is I've had some that I just really feel like they needed to get their story out.

SPEAKER_00 33:28

What's been the biggest challenge?

SPEAKER_01 33:31

Ooh, I think the the funny one is time zones because I'm telling you, like Hawaii is like six hours earlier, and then like UK and Holland is six hours later, you know, and so it's just like there's some days where I'm sitting here scheduling and thinking, okay, I have to count two hours one way or the other, and getting the time right.

SPEAKER_00 33:55

And yeah, yep.

SPEAKER_01 33:56

Luckily, maybe once or twice it's really caught me, but overall, knock on wood. I've I've managed it. You know, one one thing is sometimes there's a day where I'm not feeling as good, or there's something going on with what maybe like allergies or you know, or cold, whatever. Like those are the days that you know, I I try to keep my voice like it's it's important to keep my vocal strength going and to you know, get up and sit upright and do it's almost therapy in a way to do the podcasts and get up and be productive. So when I don't have that or when I can't have that, you know, that's that's pretty rough. And and I also don't like to cancel on people when I have it set up, you know, like so I and I think a lot of the disability community is that way, like they have to some days they they just can't do it.

SPEAKER_00 34:48

Yeah, I mean, this is a good example. We had to like bounce around a few times because of like scheduling, and then I was in a huge flare. I wasn't unable to do anything like this for a while. And so it's that's very a very big factor for all of this.

SPEAKER_01 35:04

Oh, yeah, totally agree with you.

SPEAKER_00 35:06

Okay, so if you're younger self, because listening to your podcast, what do you think it'd be like hearing your voice and your perspective at this point?

SPEAKER_01 35:16

Well, I would say the one thing is to be honestly positive, like not toxically positive. There's a difference, there is a huge difference because my like youth, I guess as they say, like I was always pushing and pushing to always be happy and positive, and there was no problems, and you know, and and that's not it's not realistic, obviously. Um, but but at the same time, like I now I still I lean towards optimism, but it's not always not everything can be positive, right? So yeah, that's I think that's the big thing, is like I would you know hope that my younger self would be like, oh, this is how this is more of just like authentically how to live with muscular dystrophy.

SPEAKER_00 36:10

Right. Because yeah, overall, like you can be positive, but obviously there's gonna be dips where it's not positive, like and you can feel those feelings.

SPEAKER_01 36:21

And I think and you can't silver lining, I mean that not everything has a silver lining.

SPEAKER_00 36:26

No, yeah. No, like and we're kind of made out to believe that there is, or like you can always find a silver lining, but sometimes that's

Parking Stigma And Invisible Disability

SPEAKER_00 36:35

just like not the truth. What's a hot take about disability?

SPEAKER_01 36:39

I mean, I could bring up Tylenol, but that might not be so good. Um yeah, I don't know. I feel like I don't know. I just feel like there's still too much disagreement in the disability space, or like people giving advice when it's not like you can't like why would you give advice to somebody unless they ask for it? You know, like that's that's a really big one. Oh, and like the handicap parking spaces, like that's and and I know this isn't a new, it's not a new hot topic. It's just the amount of times that it's not provided, or someone parks in it, or or even like the someone with invisible disabilities being judged because they have to use, you know, a placard and park in accessible parking. It's like, well, who are you to judge or to assume or know anything about the person to give them judgment or criticism?

SPEAKER_00 37:35

You know, I feel that to my core. Ty, I cannot tell you how many times I've pulled into a handicapped parking spot when I've been in like a flare day and needed like less walking. And literally, these people get out of their cars and they're like, You're really gonna take that from somebody that needs it.

SPEAKER_01 37:52

I'm like, I they're not just handing these out, like there, there's the damn placard hanging on the I mean I'm not using my grandma's, I swear. Like is that what they they probably say that too?

SPEAKER_00 38:05

They probably or they think that. Like, yeah, it's they I've I've had so many people come up to me, and it's but but along with it, like there's not enough handicapped parking that's that is in a lot of places.

SPEAKER_01 38:17

Yeah, if you look at like the the proportion of accessible spots is is way less, and and that's almost I almost wonder if there was some kind of universal way they could design parking, but I guess space-wise that would be almost impossible. But yeah, you know, some better system here. I don't know. It's gotta be something, but but in the end, too, it's like if even with the limited spots, if you could do it without the stigma and the judgment and the people commenting. And like I I am obviously very visibly disabled, but but I realize like I knew it before, but even more now from all the guests I've had that maybe don't have something so obvious on the outside, it's just the other issues they have to deal with with ableism and assumptions, it's just like it's mind-blowing to me how the judgment could still be there.

unknown 39:10

Yeah.

SPEAKER_00 39:11

Okay, so going with that, and whether this makes the podcast or not, but I feel like I'm comfortable enough talking with you about this. Um, so when it comes to somebody with visible disability versus invisible disability, you have visible, I have invisible. I think, and this is just like me telling you how I feel on the inside, and I'm getting raw and real right now, but that's like we need that.

SPEAKER_01 39:32

No, that's um great, yeah.

SPEAKER_00 39:35

I hear like your story and your needs and how much care you need, and you like can't be independent the way you want to be independent. Is that am I saying that correctly? Like you do you wish you had more independence?

SPEAKER_01 39:49

I mean elements of it, yes, for sure. You know, and and we've we could probably go on another another full podcast on just yeah platform.

SPEAKER_00 39:58

But yeah, I do and I was not always in a place where I was disabled. So I'm still learning the disabled community as well, and there's a lot to learn, and I'd in no way mean to come off offensive in any kind of sort of this. So if I do like, let me know because like I'm learning. Like when I hear like stories of people that are visibly disabled, it's hard for me not to compare myself and think I'm not disabled enough to be disabled because I have ability to live on my own. I can drive a car, I can go grocery shop, like I can do things, but I'm in immense pain and it like I'm pushing myself and I'm flaring myself and I'm not feeling well, but I'm still able to do things. Where you need care.

SPEAKER_01 40:47

Yeah.

SPEAKER_00 40:48

You're not able to just go do something without having somebody help you. Is that correct?

SPEAKER_01 40:56

Right, right. Yeah, like it's very, very dependent on especially leaving leaving the house. Yeah, like that's yeah.

SPEAKER_00 41:04

And I'm running into this so much lately, and I don't know why this isn't. I think it's probably because I'm still accepting my disabilities and my illnesses, and that's we know that that's a pro that's a lifelong process. We're gonna that's yeah. But I feel like the comparison is coming up a lot and that I shouldn't be able to be considered governmently disabled, which I am. Like I do receive disability, and I know that that's like a really, really, really difficult and challenging thing to get and process to go through. And I'm incredibly grateful that I have that help because same here it changes your life, it really does change your life. But I look at other people who don't have disability or on disability benefits and who,

Disability Benefits And Insurance Trade-Offs

SPEAKER_00 41:50

in some sort, in my head, I feel like need it more. I I don't know if I'm you're following. I'm I feel like I'm all over the place.

SPEAKER_01 41:58

I I get what you're saying.

SPEAKER_00 42:00

Yeah. And so it's like been a really hard like mental fuck for me to like know you you do deserve this. You are not able body, like uh normal is a bad word, but uh the average person.

SPEAKER_01 42:15

Yeah, yeah. Like I I think I mean, honestly, the the mental fuck part of it is is comparing to others. And like that's it's not a disability only thing, right? Like it's it's like where you live, where like your upbringing, your economic status, your your race, gender, whatever. Like it's it's so easy to look to the decide that you know, like I well, I want to be that, like I want those things, and I can't have them, you know, and and so like that's I always kind of go back to that comparison and and I do it. I do it all the time. You know, like if I could just be like that or do this differently or be more forward or whatever, you know, it's it's so easy to get into that space. And you know, it's to me it it's case by case. Like I I think that disability like it's it's valid for everybody. What I mean, it's whatever the severity is, like I mean it it's hard. I don't think you can just say that oh, this person is uh clearly not they shouldn't get anything, versus this person should get you know a different amount. And uh it's so disability benefits are so inconsistent. And someone can fight for years and not make enough. I mean, even if they they get disability, it's not enough to live on, especially if you're in like a high cost of living place, you know.

SPEAKER_00 43:51

Yes, disability is meant to help you, but you also can't make money on it or you're kicked off and you need the medical like very true. You the insurance. Insurance part is like the huge part of it. Yeah.

SPEAKER_01 44:02

But it's not just the monetary amount, it's it's the Medicare. It's actual insurance to cover the care that we have to have. You know, and it's uh it's just and and I know people that have they deserve it as much as anybody and they can't get it. Yes. And so I I'm just at a loss with uh, you know, yeah, how do you define and how do you make a decision to not give or how much, whatever, you know. But yeah, I that's one of the biggest mental health things, I think, is comparison, you know. But I I just feel like visibly or not. Like I I think that everybody still needs to be helped with more water. Yeah, like and care, like physical care for me, or may like maybe someone else with with non-visible needs care in a different way. Like it's I don't think that like you or anybody should feel unworthy or and I and I know that people there's some out there that try to make it that way, you know, and and like downplayed what you're going through. But you know, it's as hard as it is to you just have to get out of that mindset, you know.

SPEAKER_00 45:20

And I think again, it kind of like all comes back to like ableism at the end of the day, too. Like, and that's back to the hierarchy. Like, I think we just need to chuck that out and it like a spectrum or something, because obviously there's different disabilities, but the hierarchy-size-fits-all type of yeah, it the whole yeah, I I think so too. Like the whole system is just obviously it needs reform, but that's not gonna happen anytime soon right now.

SPEAKER_01 45:47

So actually, it's I feel like it's in deform right now.

SPEAKER_00 45:51

Like, yeah, we're going back.

SPEAKER_01 45:54

Yeah, it's like, okay, let's take whatever little gains we had and just chuck it out back to the like the the stone age or whatever. And yeah, it's literally insane.

SPEAKER_00 46:03

That could be a whole nother talk, like that could be a series of podcasts probably. Literally, it is a scary time for the vulnerable community and the marginalized community, and you know, and disabled people fall into that. Yeah, I think the more voices like us and so many people are speaking up, and that's just I think gonna be a very big movement, even if it's very gradual and slow.

SPEAKER_01 46:28

Well, and I feel like too, it's like through different areas, right? Like it obviously there are like the physical protesting things, but like many of us can use these kinds of platforms to really raise awareness and try to push back. So I think that looks very different too. Like again, like disability, it's it's adaptive.

SPEAKER_00 46:48

Yeah. Is your care, like if you need um in-home care, is that covered by disability uh benefits?

SPEAKER_01 46:55

No. So it's a trade-off because I have I have Medicare, you know, and so like that's the more federal side, and that doesn't really cover any caregiving stuff. Um, but the state, like the Medicaid level, I don't know what it's like now because I haven't really tried to use it. But I know state by state is different. But from my understanding, you can get a lot more hours of of care support if you go through Medicaid, but then that's that's gonna cut into Medicare. And then like I need a PhD in Medicare, Medicaid to actually understand like what balance. Like how how do I even go about trying to get both? Right. That's even possible.

SPEAKER_00 47:39

It's so yeah, that whole process. Well, I needed so much help from my parents to go through that process because that's not something that is easy at all.

SPEAKER_01 47:50

No, it's not, it's it's hard and time consuming. Yes. I don't even know, and and again, that's a factor too. Like, I I can't afford hours and hours of paid care, really.

SPEAKER_00 48:03

Right. Like your whole entire benefit that you're getting monthly then is just going right back to care. It's like there's so many other factors that you have to like. I mean, like money to live and travel to appointments, like whatever. Totally.

SPEAKER_01 48:18

Or maybe like forbid that you want to go do anything fun or go on a trip or have any money for that either.

SPEAKER_00 48:23

So yeah. Yeah. What's like one thing you wish people asked more about muscular dystrophy? Or is there like something you wish more people knew about it?

SPEAKER_01 48:34

Don't judge like by what the abilities are on like what and also like don't assume there's something mentally there as well. You know what I mean? Like it's it's not always both. It's you can have the physical disability, but then like in your mind and your brain, like it's so scary, how much more active I feel like my brain is in my body, and that's that balance is crazy to try to maintain or figure out how to deal with, you know. And so, like that's I think don't assume that we don't want to do things or don't want to have a family and travel, all those, all the things.

SPEAKER_00 49:16

Well, I've had you for an hour, and I really appreciate you coming on and talking and sharing your story and advocacy and everything about disability in these days and what it's like to live with it. And oh my god, where can we find you? Drop your socials.

SPEAKER_01 49:31

Oh, yeah, yeah. Well, Instagram's the main one. It's uh Dr. So D R period and then T-Y-E-D M-A-R-T-I-N. That's me on Instagram, and then like Spotify YouTube is where the the TIPOD is, the podcast, and you know, people want to check it out. Either one of those are are out there.

SPEAKER_00 49:50

Y'all better go check it out.

SPEAKER_01 49:51

Yep, yep. It's just yeah, casual conversations within

Where To Follow And Final Message

SPEAKER_01 49:55

the disability community.

SPEAKER_00 49:56

So thanks for putting up the good fight.

SPEAKER_01 49:59

Definitely we'll we'll keep it going, right?

SPEAKER_00 50:02

We're not stopping anytime soon. It's like we can't. We literally can't. No choice.

SPEAKER_01 50:07

Yeah, no, but it's it's been great on being with you on the show here, Caitlin.

SPEAKER_00 50:12

Yeah, thank you, and we'll chat soon. All right, you guys, make sure as always you follow, rate, hit that subscribe button so you can get notifications when a new episode is coming out. Sick guy sort podcast on socials, and make sure you go follow Ty, Ty Pod, and Dr. Ty Martin on the socials, and I will link all that below. Have a good rest of your week, you guys, and uh happy motherfucking healing.