Christina: [00:00:00] Welcome to the Taking the Lead podcast where we empower people to be unstoppable. I'm Christina Hoeppner with my co-host Leslie Hoskins and Timothy Knu. We have a lot of things happening on campus coming up this month and in September and October the. Busyness of the holiday season. I feel like,
Leslie: you know what's crazy is we always say like, when it slows down, when it slows down, we'll do this.
And it never, it never really slows down. No campus is busy. The summer is a busy time for us to do tours and get people and show 'em around our, our campus. And we've got summer lions, summer visits happening. Yes. And Timothy, you've been up here for Lion Summer visits before, right?
Timothy: Oh yeah, it's a great event.
Uh, they fly in a bunch of lines, uh, one, uh, for like a Friday. Then, uh, they have a meeting on Friday, Saturday. Then everybody goes home. Yet they have a new shift of people come in every day and it's a great event to. Uh, teach 'em about Leader Dog and let them see what we do up there.
Christina: Yeah. And Lions, for [00:01:00] people who don't know, lions Clubs are huge supporters of ours.
We were founded by, by three Detroit area Lions Club members, and so around the world, lions Clubs are really big supporters, so we love to be able to bring them to campus and sometimes that's their first time that they're, they're there and can actually see firsthand. All the work that goes into it.
Leslie: Yeah.
And the, the results of their effort. So it's wonderful to get people on campus. And I know the lions have some fun traditions. They do. Oh yeah. What is it Timothy like chili and donuts. Chili and
Timothy: donuts. Oh my gosh.
Leslie: Do you know how that started or why that happened? Or why?
Timothy: I think they started way back when, and it's a, now it's just a tradition, so they always had it.
And I saw a guy last year pour his chili on his donut. I was looking, I dunno about that. I know.
Christina: It's funny. Every year I've been invited down to like try Chilian Donuts and I can't get myself to do it. I mean, I definitely stop
Leslie: by for a donut. I'm not gonna miss that on that.
Timothy: Well, it it does go together.
Christie
Christina: does. It does a combination. [00:02:00] I just think it throws me off.
Timothy: Well, the, the, you eat the chili and then the donut kind of. You know, mellows everything out. So you need to try it. I'm serious. It really works really well.
Christina: Yeah. Maybe I'll head down there this year. It's a, just don't eat
Timothy: seven of 'em.
Leslie: Oh, it is a fun tradition.
And the lions love it. And our kitchen actually makes it all from scratch. Oh yeah. And it's, it is very good. I have not combined the two, but I have had them both separately and they're delightful. And then I remember during, uh, COVID when we couldn't have people on campus. The Lions did virtual summer visit?
Yes. And they sent, I remember that everybody a can of Hormel Chili and I like Krispy Kreme, um, donut gift card or something like that. Yeah. I thought that was really cute. Super creative.
Timothy: Well, the secret is that they have donut holes go with it. So I put the donut hole back into the donut, so I, you know,
Leslie: oh, that's.
It is very cool, but that's just one of the events that takes place. Yeah. And there's a couple weekends in the summer that that's happening, so people are coming and going. We're having clients come share their stories so that you can hear [00:03:00] firsthand the impact of the efforts. Yeah. But then we also have, you know, can Quest coming up where we partner with the Michigan Department education, low instance outreach to host that.
We also have a low vision expo that's gonna take place in September and local. Service providers such as ourselves and others get together on campus and we just kind of open it up for people to come learn. So exciting things happening. Yeah, it's a
Christina: busy time on campus. 'cause we always think, you know, this is kind of the kickoff to the end of the year and people think it's crazy when we start, say August is kind of really that kickoff of the busy end of year season.
It gets crazy.
Leslie: Yes. And it happens so quickly, but it's, uh, wonderful, wonderful stuff. And, uh, today we are here to highlight a client who was actually featured in this year's dinner in the Dark.
Christina: Yes. Today we're joined by Krista Webb. Krista is a deaf blind advocate wife, mother, and proud white cane user, living with Usher syndrome Through wood-burning art, she shares stories that reflect the [00:04:00] diverse low vision and blind community.
When Krista is not creating, advocating or hitting the gym, you'll find her traveling or camping as she was, is always up for an adventure.
Timothy: Good morning, Krista. It's great to have you on the podcast this morning. Do you mind, uh, reminding our listeners what is Usher's Syndrome?
Krista: Hello. Thanks for having me.
Usher Syndrome is a rare genetic disease that causes both hearing and vision loss and sometimes balance issue, and there's no cure.
Leslie: When did you first get diagnosed with Usher Syndrome? Or just if you don't mind telling us a little bit about your journey with, with vision loss and, and hearing loss.
Krista: Yeah, I don't mind.
I am 37, almost 38. And, uh, at age 19 in 2006 is when I was diagnosed with Usher Syndrome. So I was born deaf, or heard of hearing. I like to tell people I'm deaf without my hearing aids. [00:05:00] And, um. When I was diagnosed at age 19, uh, we didn't really talk about it just 'cause I could see fine. I was still driving, um, the hearing loss started.
I was born with that. So I've been wearing hearing aids since I was two, that it just seemed normal for me, the hearing loss. Um, but as to the vision loss, um, quite frankly, I wasn't sure if the doctor who diagnosed me. Really knew what he was talking about. Um, I was in college. I maybe was in denial. What did he know?
I was still driving. But, um, little did I know he was right. Mm-hmm. Um, fast forward a little bit and I had to stop night driving, which is one of the symptoms to Usher Syndrome, uh, which is the retinitis pigmentosa. The vision loss is night [00:06:00] blindness. Mm-hmm. So I stopped night driving in my mid twenties and that's when reality really hit me.
Leslie: Yeah. So at 31 you were really starting to experience the vision loss on top of the hearing loss. How else were you impacted or your family and your life as you were taking on this new challenge?
Krista: So we had moved from Washington state to Texas, and my kids were very young and, and so for them this is normal, um, because that's all that they've seen me.
With the hearing and vision loss, and they've been great. Um, my husband has been awesome supporter, whatever would help me. And I think what really helped me was connecting with other people who were going through a similar situation. It's such a gray area because I'm not completely blind, but. [00:07:00] I, I can see, but I can't see.
It's like that gray area. Same thing with my hearing loss. I can hear, but then I can't hear in certain areas certain times.
Timothy: So a lot, a lot of people go through that with their losing of their vision. I had the same issue. So how long did, uh, it take you to realize that it was time for you to go get some training at Leader Dog?
Krista: So it, it happened maybe a year after I hung up my driving keys and became legally blind. Um, I had the opportunity to travel solo to go meet my brother's, uh, newest first kid in Washington State, and I was in Texas and I thought, okay, well let's go ahead and I, I have this cane, so I, uh, I thought I would bust it out for the first time and.
I, I felt, I have to say, I, I felt powerful. Like, like the cane was a Harry Potter wand, you know, magically partying the crowd as I moved. But when I reached the gate, a blood of [00:08:00] emotion hit me. Like I recognized the independence it gave me, but I did not like the attention it grew. So after that trip, I rarely, rarely used my cane.
Um, only when traveling with family, um, when I knew I wouldn't run into anyone I knew. But then. Three years later, a girlfriend of mine invited me to join her for o and m training at Leader Docs for Blind. And I, I applied a little after she did. So I actually ended up meeting with another friend there and the two of us completed our o and m training to together.
Um, and. It's been a game changer.
Christina: Yeah. And we talk about it all the time that there's such a community when you come to lead a dog and you meet people, but you met people beforehand. So how did you find that community for yourself? Because I know a lot of the times when clients come to campus, they say, you know, this is the first time I'm meeting someone who is going through what I'm going through.
So how did you find your [00:09:00] community?
Krista: So it all started with. I know some people will be raising their eyebrows or, or shrugging, but it's, uh, social media,
Leslie: so that's a connector. It's,
Krista: it's like I love hate relationships. Mm-hmm. Some people love it, some people hate it, and I. Got connected with people on Instagram and Facebook group.
It started with Facebook with other people who have ret, tinnitus, pigmentosa, or Usher syndrome. I'm really involved with this Facebook group group called Awesome Moms with Us, and it's a great group for, uh, people who have Usher Syndrome and they're a mom. So we can come together. We've actually had a couple of retreats that we met in person, and you just feel high in life after meeting somebody else knowing, okay, we got this.
We're not alone. We can encourage each other. And we get it. We get it when we're feeling low, uh, or, or just [00:10:00] sharing the struggles and, and it's been a really good resource for me, just connecting with those people who get it.
Leslie: That's a fantastic resource. And I, yeah, social media comes with goods and bads and all the in between.
But when it's be u being used in this way to connect people and share experiences and share stories and empower each other, it's incredible. And I know I've joined some of your meetings with the, the awesome moms with us, uh, and gotten to share about Leader Dogs. So I think it's incredible that you're also sharing resources of how to support one another.
Things that are working for you. So that's wonderful and I love that you were able to come to campus with somebody. I didn't realize that you knew somebody already coming to campus, so that's great.
Krista: Yeah. Yeah, it was actually my first time meeting her in person. We had talked virtually prior, so it was kind of a nice way to motivate each other and looking forward to this new thing.
Leslie: Absolutely. And a little less intimidating to know that you already have a relationship. Right. You're gonna be [00:11:00] in it together and figure it out and navigate it together. Yeah. So once you got to campus, what was that week like having somebody there that you knew, but also just experiencing Leader Dog and the training?
Krista: Well, the one word that comes to mind is. Comfortable. I felt like I was home away from home. I enjoyed the food. The workers were fabulous. The training, I loved my o and m instructor who worked with like my knees, my, what I wanted to work on. So we, so he also challenged me to, and we went and visited, um, coffee shop, an antique store.
Mm-hmm. So he took me into like a basement with. Awkward stairs and it was dark and it was a good challenge. And then of course, um, we checked out Target, so that was a little less intimidating, but. It was still a good lesson, going to target in several different neighborhoods, hiking trails, the [00:12:00] beach, various intersections.
So when I came home, I felt high in life. Like I was more confident than ever using my white cane in public. Not just like when I'm traveling and I won't recognize or they won't recognize me, but I felt a little bit more, um. More ownership with using my white cane. I'm like, okay, I'm owning up to my disability and this is, it is what it is, and let's just move on.
And what really also motivated me is I'm a mom and I, I want to prove to my kid that I can be brave too. And I want them to be brave in life. And if I can do this, not that they have the same condition, but. We all have obstacles in life that we need that little encouragement, that nudge, that push. And so, you know, that's what I like to do.
Timothy: So when you came to Leader Dog, was that your first trip ever to travel by yourself with a cane or anything?
Krista: No, it, it was not. I [00:13:00] actually, I think that story I talked about when I went to Washington State from Texas, that was my first, I think that was my first time traveling solo as a legally blind person.
And that was when I used the cane for the first time at the airport.
Leslie: And you're right, traveling with the cane can bring all sorts of emotions for people. It can be a really positive experience, like you mentioned, like the Harry Potter and it's, you know, parting of the seas. And it does that and it, it, it helps people recognize like, hey, this person might want some additional support or may need some help or.
Just, Hey, maybe stay out of my way. But other times it does feel like it's drawing a lot of attention and so it can be a very big mix of emotions, so, mm-hmm. Thank you for sharing your story and kind of feeling more empowered after having the training and experience using the cane, and again, with your support network that you've built.
I think that is a really, really key piece to people feeling empowered and supportive to know that you're not alone.
Krista: [00:14:00] Absolutely.
Leslie: So as you, uh, return back home and you're traveling independently with your cane, and again, you're, you're, you're continuing to advocate in so many different ways, and I love you also sharing your story about being a mom and wanting to just be an example for your kids.
I think that's really relatable and so important, and we all do it in different ways. How did your kids feel or your family feel once you were using the cane? A lot more.
Krista: They were super supportive. In fact, my, my older son, he, he's very sweet and he used to hold my hand and he would squeeze my hand every time there was a step.
He would raise my arm or holding hand. He would raise my arm if we're going like up the hill. And kind of bring it back a little bit if we're going down the hill, and he'll do a squeeze for every step we make. And so when I came back using my cane, he still wanted to hold my hand, but then my cane would communicate to me first before he would, and he's like, that's not fair.
He's like, wait, [00:15:00] I wanna be the one that's helping you. But at the same time, he thought that was really cool that the cane was communicating to me. And he, he, he right away could see how it was very hopeful for me to use the cane and I don't need to rely on human guides that I can do this. I got this.
Christina: I love that.
That is amazing that your family was so supportive and that your kids are learning right along with you as well. That little learning moment was really cool to hear. Chris, I know we mentioned in your bio and at dinner in the dark you have. An amazing talent. When you were at Leader Dog, you created a word burning piece for Leader Dog, and we still have it on display.
So can you tell us a bit about your hobby of Woodburn and how you got into that?
Krista: Well, it's almost been six years. I've always had this creative spark in me and, but never. Have I heard of wood-burning art until the [00:16:00] year after I became legally blind. Um, I had the opportunity to try it and, and I haven't stopped Six years later.
I'm still wood-burning, creating art for all the people in, in the US and I just love creating for people who actually enjoy my art. It's a win-win situation, I feel like because it's. Therapeutic to me. So if I like to keep my hands busy, my mind busy, and as long as that my mind and hands are busy, I, um, I won't fall in that rabbit hole.
You know what I mean? Like we all should have something that motivates you to get outta bed. And not only being a mom helped me with that, but also while they're at school, I gotta keep busy somehow. Right. And so when I discovered Pyrograph the art or wood burning art, I couldn't stop creating. I [00:17:00] love making art for people.
Within the last few years, I've been trying to share more of my story with wood-burning art. And so I would use American sign language or braille or, or even in incorporate tactile mediums with my wood-burning art, and it's been fun.
Leslie: I love that. What are some of your favorite pieces that you've created?
Krista: Ooh, that's a good question. Currently I'm working on the largest wood-burning art yet, and it's not a commission piece. This is the piece that I'm keeping and it's a whimsical piece and I'll, I'll explain it to you. I'll describe it what I have so far. So think of a, like a fairy tail scene. Um, instead of a tree house, it's a mushroom house in.
There's a slide coming off the mushroom with a wheelchair, a pers, a gnome in the wheelchair going down the slide. And I have a double decker mushroom where [00:18:00] there's a couple gns reading a book and, and then an elf. Uh, playing a guitar on a stump. I have a, I think is it a ferry that doing a jump rope and next to her is her white cane that's sitting against a mushroom, and then another ferry that's playing a keyboard.
And she's got some lady bugs that acts like a music note off of her keyboard. So it's really fun. Piece and I, I wanna incorporate like some disabilities, you know, like some visible disability. And I know there's a lot of disabilities that's invisible too. And so that's why I incorporated the white cane, the wheelchair, and, and we'll see what else I add on there.
I'm, it's a work in progress, but I'm really excited about this piece.
Leslie: I love that. That is so, so cool and such a creative outlet and fantastic that you get to do that, you know, [00:19:00] as an income, but also as just like a passion project. And I know you gave me a key chain last time I saw you and it says, yes, I cane and it has the long white cane and.
Uh, on it, and it is one of my favorite things. I'm looking at it right now. I have it on my backpack. I wear it every single day and I get so many compliments on it. Oh yeah. And on the other side it's got the leader dog like logo and it says comms. And so thank you for that. It is one of my favorite things, and it's so cool and so unique.
How would somebody get started or get involved in wood burning if they were interested?
Krista: Well. This is what I tell people. If you don't have patience, it's not for you. Timothy, you're out. I'm just kidding. Yeah. Wood burning requires, um. You need to go slow while you're Woodburn. It's not a fast process, like if you pick up a marker and just scribble it in.
Um, another thing is you have to have a little bit of vision. So I guess I didn't really talk about, um, my current vision state. I have less than five [00:20:00] degrees of central vision remaining, so, um, I can still woodburn as long as I can see a little bit because. Blind painter, they can touch their paintbrush and, and they'll be fine.
It might be messy, but you cannot touch a Woodburn pen, you'll burn yourself.
Leslie: Right.
Krista: So I just want to woodburn as long as my eyes allow me to do so, and. I would just really enjoy wood burning because it forces me to slow down. And while I'm Woodburn I'm actually listening to audio books and leader Leader Dogs for the Blind podcast and, and music and things like that.
And I just, it's just a fun way to keep myself busy. So, um, it's, there's a lot. To it though, when it comes to Woodburn, you, you figure out which wood-burning pen to get, what kind of wood to use. There's a prepping [00:21:00] involved with sanding, making sure the wood is smooth, and then what finishes to use and if you wanna add a stain or.
Um, if you wanna torch it at the end, and I mean, there's all kinds of, and then I could just bore you guys to just talking about wood burning. Um, you can tell, I, I get pretty excited about it when people ask me about Woodburn. So I, I really enjoy it and I just hope that Spark continues. I just really like it.
Christina: Yeah. And Chrissy, you share your Woodburn pieces on your Instagram. Do you wanna share your Instagram handle with people if they wanna follow you?
Krista: Yeah, it's blind love dot wood burning.
Christina: Yes. So definitely follow Krista, because I love looking at all of the pieces that you do and what you share on there.
It's very cool and unique to see.
Krista: Yeah, it's fun. I like to show people that, hey, I am legally blind and I can still create. One piece of like this and just, and at the [00:22:00] same time, I, I'm also educating that, um, you know, blindness is a spectrum. Most people don't realize that I was in that ignorant boat and I didn't know that, that most blind people can see something.
Absolutely.
Timothy: Well, Chris, everybody thinks, uh, you come the leader dog and you're going to eventually end up with a dog. And we know dogs are not for everybody. So why do you choose not to have a guide dog?
Krista: Well. There's a few reasons I already feel here. I'll, I'll list the three reasons why I choose to be a cane traveler for now.
One, I feel confident with my white cane, so I just don't feel. I need to challenge that too. I've heard some horrid stories with friends bringing their guide dog to restaurants in Uber cars where they get turned away and that constant stress wondering, are you gonna be, are you gonna get accepted? Are they [00:23:00] gonna allow you to come here?
Um, and then three, I have a pet dog who may get jealous and he's my buddy. Yeah. So just. You know, I'll, I will reconsider getting a guide dog when my, when my dog does die, and, and it could be within a couple years. He's, um, about to turn eight and I did try using a guide dog when I was at Leader Dog for the blind o and m training, and I thought it was really cool.
I, I really liked it, but. I just wasn't ready for it because I was transitioning to low self-esteem using a white cane to feeling confident using a white cane, and I feel good using a white cane.
Leslie: Thank you for sharing that. I think, like Timothy mentioned, so many people think that the ultimate goal is always a guide dog, but there's a time and a place in people's life and it may never happen either.
It's such a personal [00:24:00] choice and I love that you're taking all those things into consideration and really evaluating what is best for you. So thank you for sharing that. Yes. As we, uh, wrap up today, I do wanna ask. Thinking about anybody who's maybe listening to your story here or thinking about that 19-year-old yourself as you're diagnosed with Usher Syndrome, is there any advice or anything you'd like to see even to your younger self?
Krista: Yes. To find people or organization to connect with, and that's one of the best things about social media is you will find. Somebody or an organization to connect with. It's just a matter of finding what works for you, what, what you're looking for. So for me, you know, I'm a part of the Facebook group called Awesome Moms With Us.
It's a great safe. Safe, um, space for support and connection. And the final, um, piece of advice is to get ahead with training. Whether it's o [00:25:00] and m training or guide dog training, or assistive technology training, the more that you learn about available resources now. The less overwhelm you'll feel later when those tools become essential.
Leslie: That is some really good advice. Thank you, Krista, and thank you so much for being here and sharing your story today.
Krista: My
Leslie: pleasure, and thank you so much to our listeners for listening to the Taking the Lead podcast. I'm Leslie Hoskins with host Timothy Kyo and a Christina Hepner. We hope you enjoyed hearing Krista's story.
Please join us next time as we continue to dive into the world of blindness.
Christina: If you'd like to learn 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.
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