Christina: Welcome to the Taking the Lead podcast where we empower people to be unstoppable. I'm Christina Hepner with my co-host, Leslie Hoskins and Timothy Kno. So we have a lot. Happening in 2024 at Leader Dog and one of those events is our big dinner in the dark
Leslie: event coming up. I can't believe it's already happening.
This year is going by so fast already. And I know we say that every year. Yes, we do. We say it every year, however, uh, yeah. Friday, March 8th is dinner in the dark. We're doing it again 2024. Yes. How exciting. And Timothy, you were our, uh, star client, but it was the Covid year, right? Yeah, yeah. Covid year.
Timothy: It was about three
Leslie: years ago.
2021 must have been 'cause we had Yeah. Covid in, or I'm sorry, we didn't, well everybody had COVID in 2020, but, um, we actually had dinner in, in the dark virtual in 2020, like right before kind of the world shut down. It was crazy. Yeah. And
Christina: then that next year. Is when I joined the team and it was virtual.
Leslie: [00:01:00] Okay, so it was 2021 that Timothy was the Yes. Client highlight. Yep.
Timothy: Yes. That's when that crew came out and we had that big, uh, Snowdon here in Toronto.
Leslie: Oh, yes, that's right.
Christina: Yeah. This year we're excited because we're, um, actually highlighting our youth o and m and our teen program, so that's really cool.
Leslie: That is really exciting. We have a lot of cool things going on for teens right now with teens slash youth o and m, and then our, of course, our teen summer camp, which I won't talk about 'cause Christina always gives me that look when I go on and on and on and on about camp. So I won't do it, but we'll have
Christina: to do a whole episode on camp.
We haven't done that yet. We should
Leslie: do that this year. Happy to.
Christina: I, here's the thing on that episode, I'll just stay quiet the whole
Leslie: time. Uh, dinner in the dark is so much fun. Uh, Christina, I know you went last year Yeah. With your family and Johnny and I did the same. I had my husband and, uh, my parents came, which was really fun to show them a little bit of what I do and.
The big event and so everybody [00:02:00] eats under blindfolds. Mm-Hmm. Um, to get an idea of what it's like. Of course, it's just a small glimpse as everybody can take their blindfold off. Uh, but really people, they do it. It's really a fun experience and everybody participates and it's, uh, you know, I think builds some understanding and empathy Yeah.
Amongst a lot of our donors, which is pretty cool. And volunteers come and puppy raisers and it's just, it's a really nice event.
Christina: Yeah. It's great to see. Everybody in one space. I know, you know, throughout the year we touch our volunteers or we, you know, see donors and all of that. But it's nice to have everybody in one space mingling together, getting to know people, and then also seeing, you know, there's puppies there that are being raised.
So it's cool for people to see that process. 'cause sometimes there's little puppies, but then there's puppies that are in the older phase getting ready to come back to training. So,
Leslie: um, it's really cool.
Timothy: Well, my big question is, how's the food.
Leslie: The food is good. I actually, uh, a couple years ago, I must've been 2020, got to go to like the taste [00:03:00] testing at a time and that was so much fun.
It's at MGM, downtown Detroit. It's really good food and it's a good time to learn too. So we have what we call the walk the walk experience. Our o and m team is there teaching a little bit of human guide teaching some basic cane techniques, just kind of explaining a little bit more about vision loss.
Mm-Hmm. And the tools that are available to people who are blind or visually impaired. So great opportunity to learn and meet. Folks. Yeah.
Christina: All the information is on our website, leader dog.org. Go to our events tab and click on dinner in the dark and you'll see everything that is happening
Leslie: that day. Yeah.
So we hope to see everybody there if you have questions. Of course, Christina just told you to check out the website. Today our guest is a leader dog client who has been actively sharing about his journey on social media. Walker Jones was diagnosed
Christina: with Usher Syndrome 10 years ago. He came to Leader Dog for orientation and mobility and is now using social media to educate and share his story.
Leslie: Walker,
Timothy: welcome to the podcast. Can you describe what your life was [00:04:00] like before you came to Leader Dog with your Eser syndrome?
Walker: It was pretty crazy. Um, I gotta say that. I didn't really come into my own about any of this until about six months ago. 'cause before that I was just living in like a type of denial that I didn't want people to know I was blind because I knew that that would come with a lot of change.
Like people in my family, my friends obviously knew, but out in public, I just didn't wanna be treated different. So I kind of just did that little fake it till you make it thing and it became too hard to do. You know, you just can't fake it so good that you know, when you're bumping into things and knocking stuff over, it's obvious something's wrong.
It was just pretty hard,
Leslie: man. Yeah. Was there like an event that happened or something that made you stop and think like, okay, I've gotta figure something out. Like I have to find a mobility device, or I need, I need to be safe.
Walker: I remember the day, it was be sometime in June and [00:05:00] my son had one of those little hoverboards that they ride around the house in.
Mm-Hmm. You know, I'm talking about the little popular hoverboard and they weigh like 50 pounds and he left it right in the living room floor. And I kicked it so hard just walking that I split my big tow nail all the way down the middle. Oh my gosh. I had to super glue my to toenail again. Oh my. I just remember being like super mad, like I was, you know, I'm cussing, I'm, I'm cussing at him, but I'm.
I'm so tired of this. I, I looked at my girlfriend and I was like, I'm, that's it. I'm done. I'm sick of it. I can't do this anymore. And she's like, well, what are you gonna do? I was like, I don't know. There's something on the internet, I'm sure. So I got online and I started, I got online and I started looking and I came across several, um, places.
You know, I didn't know what it was called. I didn't know what o and m was. I just typed in how to, how to learn to walk with a cane. I figured that was the thing, right? Yeah. [00:06:00] And. I type in a, I got a couple of 'em and I seen Leader Dog on there, but at first I was like, that's way too far. That's all the way to Michigan.
So I started looking for the ones that were closer to Georgia and all those couldn't help. And, and I was like, well, in my mind I didn't know anything that it was like a nonprofit free thing. So I was like, ah, there's no way I could fly up there. So I just gave up for like a couple of days. And then there was one other person that lived in my area who had rp, and I think hers is, if people don't know RP is short for retinitis pigmentosa.
She, um, she's not as nearly bad off as I was, but she said, well, I heard of this place called Leader Dog for the barn in Michigan. They do non-profit and they'll fly you up there and do all that stuff. I was like, really? I think I seen that website the other day. I assuming I had to pay for my own stuff and so I called the number and I spoke to, um, a nice woman named Elle.[00:07:00]
And she answered all my questions. And before you know it, I was up there almost a month and a half later.
Leslie: That's awesome. I, and I think so many people experience that, right? Like you don't even know that that orientation and mobility exists. I don't think many people do unless you have direct need for it or know somebody.
So that random Google search is something we're always trying to figure out is like, how can we get people who are searching these things and something our marketing team works on? But I'm so glad that you found that context, how
Walker: to Walk with a
Leslie: Stick. Yeah. How to walk with, yeah, these are all things that we have so that hopefully our ads pop up, um, when you're doing those Google searches, and I'm glad to hear that it did, and I'm so glad that you connected and you were here before you know it.
So you came for orientation and mobility. Tell us a little bit about what that was like. Did it meet your expectations?
Walker: Oh, it was beyond my expectations. When I went up there. I was scared outta my mind because. I didn't know anyone who was blind. I think when I first walked through the door, I was a little like, I [00:08:00] almost was like, maybe I shouldn't do this.
You know what I mean? Like this is kind of crazy. I'm not blind, but I didn't really know about this whole spectrum thing. You know what I mean? Yeah. And I thought I needed to be worse than I was. And I remember going to the office and them being like, Hey, you can sign your own thing without the little card.
I was like, well, yeah. I was like, man, I don't belong here. Just 'cause I felt like I just wasn't blind enough and everyone was so nice. And that is the biggest thing. And all the friends I made while I was there, I still talk to all of them. I think one of 'em I couldn't figure out. I forgot to get her number and lost contact, but it met my expectations beyond what I ever thought it would be.
I thought I was just gonna come up in here and it's gonna be like school you. Yeah, I hate school. It was, it was just awesome. Y'all like accommodated me in every single way that they could, and I kind of felt like I was being treated like a king and [00:09:00] it was just. I don't know. I left with nothing bad to say about the price.
Well, Walker, it
Timothy: sounds like you and I have the same story and it's intriguing that both I and you denied everything. And we had to get to that point where like when you kicked that hoverboard, that that was the moment for you and for me, I had to get to that point. All of us had to get to that point where we gotta decide.
Mm-hmm, we've gotta move on and make our lives better and accept what's going on. And I'm glad that you finally did that and I'm glad that I did that 'cause. Both of our lives have been improved. Going to Leader
Walker: Dog. Nothing bad ever came out of it, accepting it.
Leslie: So, yeah. I'm so glad you guys both finally came out of it too.
But you know, the whole thing about it is it's, it's not like a linear path, right? That's one thing we talk about. Mm-Hmm. All the time is you go back and forth and maybe you overcame denial and then. You're feeling good right now. You're confident, but it can come back and you can lose more vision. And it's just like this spectrum that kind of everybody goes back and forth on.
And I think being conscious of where you're at and talking [00:10:00] about it and recognizing that you're not alone and there, there's others out there and there's people to help, which, um. Is what we're trying to do. So I think that's incredible. Mm-Hmm. And also, both of you right now, just sharing your stories and talking about this, and I know we wanna talk about Walker, your platform and what you're doing on social media, and this is kind of a great leeway into that.
Do you mind sharing a little bit about your social media? Well, I
Walker: feel like when I first came back from Leader Dogs, I felt like. I to kind of preface that, before that, when I was just kinda living in denial, I didn't know what to do in my life, you know what I mean? I was just like, I'm, I'm dealing with this thing and I'm not even really sure what's going on.
I mean, I knew what the disease I had was, but I didn't know what it was gonna become of me and all these things. And then when I came back from Leader Dog. It was the first time I felt like I had something to do. You know what I mean? I was like this whole thing with denial. I feel like one of the reasons why I did it was.
I guess because when I would get online and I'd start researching this [00:11:00] stuff and trying to figure out what's going on in my own, in my own eyes, there was nobody online or making videos that made it seem like it was fun or like it ain't the end of the world or anything. It would just be like, oh, this is how you use a cane.
And it was just all tutorials and nobody ever made it seem like it was cool, in my opinion. And I felt like if I had something like that for me, I might've would've came a little sooner. Maybe a lot sooner. Maybe it would've been inspired me years ago. So for me, doing the social media thing was my way of trying to inspire other people and hopefully a lot sooner than I was inspired to finally do it.
I don't want them to have to get to that point where I kick the hoverboard and just get mad. Start. You know, spiraling out. 'cause I'm just so upset. I want them to just be like, man, this ain't even that bad. That guy over there said it was cool. Yeah. You know, he said, it's all good. I wish I had that. So with the TikTok thing, TikTok kind of seems to be the thing right now, right?
Everyone's going TikTok. [00:12:00] So I thought that that would be the best way to reach the most ears. And I know that. Another thing that was thinking in that was in my head was, you know, usher syndrome. A lot of people get diagnosed in their younger years. It's mostly kids that are on TikTok, right? So I was like, these teenagers that are on there might see my stuff.
Yeah. And then go, man, you know what, that guy said this was cool, that guy's walking around. He, he doesn't make, he, he doesn't have to dress a certain way, but blind people don't look, he looks like everyone else and he is just vibing and chilling. I'll go to Leader Dogs. You know what I mean? So. That's kind of what I was trying to do.
Christina: I love that we shared your video on our social channels and so many people were like, wow, that's a really cool way to put how you see things or how you use a cane. Um. So I think what you're doing is great 'cause representation matters so much. Being able to, you know, see, especially, you know how you're talking about [00:13:00] teenagers, being able to see, you know, or hear or understand what they're going through or have someone to relate to is so important.
Mm-Hmm. So I think what you're doing is amazing and I think you're gonna help a lot of people doing it.
Walker: That's the goal.
Timothy: Well, it seems like you're telling everybody, you know, it's not the end of the world. You are taking it by the horns and you're directing it. It's not directing you anymore. And that's basically what happens when somebody goes to Leader Dog.
They take over that eye disease or whatever it is. They don't let it dictate it anymore. And thank you for doing that on TikTok. I know that's reaching a lot of
Walker: people. Um, you're welcome man. I think, just like you said, it's not the end of the world in my eyes. It is kind of the beginning of a new one, if that makes sense.
Like you're saying, I'm changing, I'm grabbing life by the horns and I'm gonna control it. It ain't controlling me anymore. It's just exactly like
Christina: you said. Yeah. And so, you know, you said you want to reach people who are younger or you know anyone who may be on [00:14:00] TikTok. Um, so what advice would you give, uh, someone.
Else who, um, you know, may be getting that diagnosis for the first time. Who isn't sure what to do or where to go, you know? I know you recently withdrew it, so being recently out of it, what advice would you give someone?
Walker: Um, I would say just, you know, just do it. A lot of the reasons people will deny this whole thing is because they don't like the perception of 'em once they seem like they're blind or whatever, right.
And the way I always describe life is everyone you walk past, you're probably never gonna see them again. You know what I mean? So what do you care what they think? I think what you should do is take control of your life. I think what you should do is not let it control your life. I think that if you refuse to get the help that you need, and you know, I feel like a lot of people know they need the help before they.
[00:15:00] Admit to themselves, they do need it. I think they know deep inside they need it. They just don't want it. And there's nothing wrong with that. You know, we all had to go through it, or we all had to experience the same thing. Just like Timothy said, he went through the denial and at the end of the day, you know, you gotta get where you're going.
You gotta, if you got somewhere you gotta be and you can't safely get there. What good does that do you to hold yourself back? You know what I mean? If you got stuff you gotta do, you gotta do it. And for me, that's kind of how I felt. So I think the advice I would give everyone is to just take control of their life.
I. And don't let it hold him back. 'cause this, I actually feel like I'm even more badass now that I got a cane. You know
Christina: what I'm saying?
Leslie: Yeah, absolutely. That's awesome. I got a stick
Walker: I can hit people with if they mess
Leslie: with. That's right. I'm not even mad that you're calling a stick right now. And you know what?
Christina: That I will [00:16:00] say, um, as a team member, we were able to go through that a little snippet of what you guys go through in a week and it's hard. Yeah, it is. It is a skill you have to learn. So yeah, I was. Say that you are amazing for learning that skill and you should
Leslie: flaunt it. Absolutely. It is not easy
Walker: and honestly, you don't learn it all in that one week.
No, you got so much more to do when you get home.
Leslie: So how are you feeling now? You've come, you've gone through at least a week of training and you're right, you do not learn everything in just those five days, but it's a really good start. How are you feeling since you've been home?
Walker: Oh it is. Um, my life's total totally different.
It's the complete opposite of what it was before. I'm not saying it was, you know, a complete 180, I guess I said complete opposite and then 180. But I was okay at faking it. I was pretty good at it. So much so that all the people that I ran into after the fact would be like, wait, you were blind. Right. They didn't even realize it.
And I was like, oh. I mean, that's kind of a long story, you know what I mean? But [00:17:00] I think that I'm way more confident. I know that when I would walk around at night, you know, just like say you gotta go out to the car, get something, it's in the driveway. You can't see. I used to always use my flashlight to get out there for a headlamp on my head.
Yeah. And I. I feel like most people around me can attest to the fact that I don't even use a flashlight at all anymore. I just use my cane to find my way to the car and. I use my cane everywhere I go. It doesn't matter where I go, I use it. I was moving, so we just moved into a new house. Mm-Hmm. Thursday.
Oh my gosh. Congrat. And the whole time I was moving, I had my cane in one hand and a box in the other. Yeah. So I mean, I don't put it down for nothing because it's made me that much confident having it on me. Yeah. And it's really. Honestly, I don't, I'm not afraid to go anywhere. I'm not afraid to walk anywhere.
I'm not afraid to, to do anything
Leslie: anymore. It's an extension of
Walker: you. Yes. It's almost like having just longer arms. Yeah,
Leslie: absolutely. It's telling you all the information you need to know about the ground. Mm-Hmm. I think that's [00:18:00] incredible. So what has been people's reaction? So you said people didn't even know you were blind.
Now you're traveling with a cane everywhere. How have people reacted or supported both in your personal life and on social media?
Walker: Well before, you know, for the last couple years I've been a photographer, so that's actually how I already knew how to work a camera pretty well for TikTok. Yeah. And, you know, doing that, we mostly did weddings, which they were pretty hard to do when you're trying to fake it and get good pictures and do all these other things.
And we've run into couples who, um, we did weddings for and they would see me with my cane and they'd be like, hold up. When did this happen? Uh, we just seen you six months ago and I was like, I know, it's kind of wild, isn't it? And they were like, so you were blind? I was like, yeah. I just kind of, you know, I can see a little bit and you gotta explain the spectrum and the whole thing.
And then it starts to make sense. But their reaction is always just surprise. 'cause I think I was pretty good at faking it. Like I was almost [00:19:00] like a master editor. It's the talent. You develop it over years. I'm sure Timothy could attest to that same thing. Yes, I can. Um, until you bump into stuff and then all of a sudden you, you look like a, a dummy.
But it is a complete opposite. My family reacting to what I've been doing has been largely positive. Good. My son loves it. My girlfriend watches every video and likes getting comments on there. Try to get that out. Go get 'em going for you, boy. Yeah.
Leslie: Make sure you share your social media. Where can people find you?
You
Walker: can find me at at. Tunnel vision six.
Leslie: Awesome. So everybody who's listening go check out his, uh, his TikTok, follow along, help the algorithm. 'cause really, I mean, you're educating the public. You're helping the entire, you know, blindness and low vision community when you're spreading, you know, awareness about what it's like and.
And that it is cool, right? Like people just don't understand vision as a spectrum. And people see you with a cane and you, you know, if you're reading something and then all of [00:20:00] a sudden they think you're faking it. Um, mm-hmm. And so the more we can do to educate everybody, that blindness is a spectrum.
There's good days, there's bad days, there's, you know, some good vision, some terrible vision, and it changes all the time, the better. So thank you for what you're doing. And again, that's tunnel vision six. So check him out. Thank
Walker: you. Thank you for having me. I, I appreciated y'all letting me, uh, talk.
Christina: Yes. It was so great to have you and we're looking forward to continue to looking at your videos and sharing them out on the Leader Dog page as well.
'cause I think there were so many people that commented and even people who had Usher Syndrome as well was like, wow, I relate to this so much.
Leslie: We should really quickly just define Usher syndrome really quickly. 'cause I don't think we, we, I know we've talked about in previous episodes, but Usher Syndrome is the combination of retinitis pigmentosa along with a hearing impairment.
So it's kind of those twofold. So anybody who's listening who we've heard, you know, say Usher syndrome, it is both hearing loss and a visual impairment. So. Just to give you a little bit more. But thank you so much, Walker. Honestly, this is so [00:21:00] great. Your story is so relatable and we appreciate what you're doing and the journey that you're on.
Keep us posted with everything and if there's any way we can help, please let us know, but we look forward to being a part of your life and seeing what happens next.
Walker: Yeah. I appreciate you guys having
Leslie: me. Awesome. Well, thank you so much for listening to the Taking the Lead podcast. I'm Leslie Hoskins with host Christina Hepner and Timothy Kunal.
We hope you enjoyed hearing about Walker's leader dog experience and just his journey and social media. Please join us next time as we continue to dive into the world of blindness. And if you'd like to learn
Christina: more about applying to our free services at Leader Dog, you can head to leader dog.org or call us at (888) 777-5332.
Don't forget you can reach us at taking the lead@leaderdog.org with any questions or ideas. If you like today's podcast, make sure to hit subscribe and check us out wherever Podcast Stream.