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 Hoskin while Timothy is out joining a nice little vacation. So it's just me and Leslie today. Um, but Leslie, we have such a fun event coming up literally next week. Oh my gosh,
Leslie: it's happening so quickly, but I am so excited cause we're gonna be back in person after being virtual.
Christina: Yes. And it's, and this is your first one, right? Christina? Yes. It's dinner in the dark. I didn't say the name of the event yet. Um, dinner in the Dark. So it's our biggest fundraising event of the year. It's held in downtown Detroit at the MGM Grand, if you know what that is. And it's my first one. I've never.
Before, so I'm excited to be a part of it. I'm attending as well. I'm obviously helping out, but Leslie, we're both attending as attendees as well. We're gonna stay for the whole program. Yeah, [00:01:00] I cannot wait.
Leslie: Yeah. No, because there's so many things to do. So a lot of times people don't understand what the whole fundraiser is, but there's so much more than just the dinner.
So when guests arrive, we have different activities available. One of those being the walk the walk experience, which you know, of course I'm super excited about because it's all about the pain. So we're giving people an opportunity to check out the long white chain, do a little bit of a walk under Blindfold experience, and just learn a little bit more about what orientation and mobility is.
That's just one. Um, as, as people are entering in, but there's other things going
Christina: on too. Yeah, I'm excited just to see it all. I mean, I've been helping out a little bit behind the scenes in the planning process. Um, so it's cool to see how it, how everything comes together behind the scenes. So I'm excited to see how it's all gonna come.
Together that night. Um, and I'm excited just to see so many people, um, supporting Leader Dog. It's cool to meet, um, not over. We're gonna have some clients [00:02:00] there, but not only our clients, but our donors, our supporters, our volunteers. There's, it's just seems like everyone's so excited for this event, especially to be in person.
I know last year when I was here last year for it, but it was all virtual, so it was very different. I sat at home and was like monitoring it, um, , like social media wise and all of that, like literally at home. So it was very different . Um, but I know people are so excited to be in person, so that's coming up so fast.
Leslie: Yes. And on a personal note, well, I can't remember, is this gonna be the first time. Johnny and Brian my husband, get to meet. Yeah,
Christina: I think so. Yeah,
Leslie: I think so. Yeah. Oh my gosh. That is trying to fun kids. Cause I feel like we both talk about them so much. They probably feel like they all each other a little bit
Right. They're gonna So that'll be fun to introduce
Christina: them. Yes. Yeah. No, that will be fun.
Leslie: But a lot of people cop, so I'm [00:03:00] not a like team members, but like you were mentioning, it's so, it's just such a fun event. And then it's at the MGM Green so people can go and hang out after. So I'm looking forward to working it, but of course also, yeah, sitting down and enjoying the meal.
Christina: Yeah, I'm excited for the experience. I've, you know, at Leader Dog, um, as a team member, you get to go through and do, you know, the blindfolded white cane walk and you get to do a blindfold walk with a guy dog. But I've never had the experience to eat under a blindfold, so I'm excited to see what that is going to be like as well.
Yeah,
Leslie: it's going to be a lot of flowers. Certainly cannot wait. And if you haven't already, check it out at Leader Dog. Uh, four. Um, and a four flow recap. After the event, tell everybody how it was, but today we are super excited because we have a wonderful guest to, its a little newer to Leader Dog, uh, but lost his vision in 2020 and is now out working with this first leader.
Christina: Kellen Van Seinfeld is a composer in digital accessibility specialist based in [00:04:00] Grin Rapids, Michigan. He graduated summa cum laude in music from Princeton in 2019 and studied at the Royal College of Music in London and did graduate work in cello performance in music composition at the University of Michigan.
Kelvin currently works at More Canvas Consulting where. Clients with implementing accessible digital practices. Kelvin, thank you so much for joining us today. We're so excited to have you here. Um, of course, the first question is gonna be if you can tell mind telling us a little bit about your vision
Calvin: loss.
Yeah. So in 2020, maybe a month or two after lockdown started, I, uh, was sort of out and about one afternoon and noticed, uh, that I wasn't able to see out of a portion of my, uh, of my left eye. And, um, uh, you know, and it didn't, it didn't go away the next day. And I, I ended up, um, going to, you know, ophthalmologist and they didn't really have any [00:05:00] answers.
Um, uh, and it persisted and I guess got a little bit worse. Um, and then, um, you know, I had more tests done and still, um, wasn't terribly conclusive. And, uh, and the, the best diagnosis that they could give me didn't seem terribly plausible. Um, uh, and then, um, I returned to, returned to school at the University of Median in the, in the fall.
So it, you know, uh, I dunno, four months had passed or. and I started to have trouble just, um, you know, seeing in general started to have a little bit of anxiety driving my car cuz I couldn't see as well, um, you know, uh, you know, to pull out of a driveway. Like I couldn't see if cars were coming and, and I couldn't, uh, um, I was having trouble like reading music and, and, and um, that was really challenging, you know, going to rehearsals.
and, and, you know, plain cello, very poorly because I couldn't really see what was going on. Um, and, and, uh, and, [00:06:00] uh, and I, because I didn't really have a diagnosis, didn't know what was happening. It was really difficult to talk about. So yeah, it was, it was a, I think a difficult period. But, um, you know, thankfully after seeing, I don't know, uh, you know, I think it was like seven doctors.
I, um, finally, uh, you know, received a diagnosis that I had, um, labor hereditary optic neuropathy, uh, which is a mitochondrial. . Um, so it's, yeah, it's, uh, as, as the name was suggested, is hereditary. You know, I, um, I was, I was born with it, but it wasn't sort of activated until I was, I guess, 23 or so. Um, and, um, and uh, it turns out that, uh, you know, some, some relatives of mine also have that, but we, we weren't, um, you know, really in, in touch with him a whole lot.
So we didn't know about it. Um, and, uh, so yeah, it. . Yeah. Now I'm, uh, you know, at a point where I, I don't have any central vision, but I do have peripheral vision. So, um, um, you know, I [00:07:00] think there are, uh, you know, certain, certain tasks are, are kind of impossible for me. You know, like, like, you know, reading text or, or seeing faces, you know, things, things that are a little bit more, um, detail oriented.
But, um, In terms of being oriented in an environment, um, uh, you know, I, you know, still have peripheral vision. So, um, you know, there, there are certain things that, um, you know, there's, you know, certain environments in which I maybe don't come across as, as, uh, visually impaired. As much. Um, it just kind of, yeah.
Depends a little bit, but, um, wow. Yeah,
Christina: so, so that is a lot. 2020 was kind of the year of the pandemic as well, and you final, you said seven doctors. That is a journey to just find a diagnosis.
Calvin: Yeah, and it's, it's been interesting as well, you know, to kind of connect with, uh, you know, online with other, uh, people with this disease.
And, and it's a pretty common story even, you know, uh, in different countries and, you know, different age groups. It's, it, most of the time it takes, takes a really long time for anyone to kind of figure [00:08:00] out what's going on because. . Um, even though it's, I mean, I think in the blind community, you know, I think most people have met someone with LA two N.
It's not, you know, a terribly uncommon way to, to lose one site. But I think, uh, it, you know, in terms of broader population, it is, you know, quite rare. Um, uh, so And
Leslie: so the vision loss that sounds like happens quite quickly, is you kind of started noticing it and then it progressed rather fast. About how long would you say, was it when you started noticing the vision loss to being diagnosed legally?
Calvin: Yeah. So I think for, for me, and, and there is some variation within, you know, my disease, you know, like when it happens, um, how quickly it happens. Like I've heard as quickly as one day someone went from, you know, 20, 20 to 20, over 800. I mean, that's pretty drastic for me. It was, um, uh, um, it was, yeah, I think it was like February or.
No, I think it was April of 2020 that I started losing vision, my left eye. And then it was, I think October, beginning of [00:09:00] October, I was admitted to the hospital and it was like, it was like basically like , you're not leaving until we figure out what's going on. Um, uh, and I was right around when I kind of went into like legal blood blindness and I continue to lose a little bit of vision beyond that.
So I, I don't know, I. Yeah, like half a year or so. Wow.
Christina: That is pretty fast because I know with other like hereditary things as well, sometimes it's a long time, but that's pretty fast. And so, you know, you, that happened in 2020, but you just came to Leader Dog not too long ago. So how did you find out about Leader Dog and um, you know, what made you want to get a guide?
Calvin: So a family friend had had heard of Leader Dog through some convoluted , uh, you know, story. And, and so we checked it out online and, and of course we, you know, looked at some of the other guide dog schools that, that exist. But I, I think we were, I think we, uh, yeah, I, I really liked the promotional material.
It just seemed to have a, you know, there seem to be a really wonderful. Uh, sort [00:10:00] of , I guess, I guess a good vibe to it. , yeah. Uh, and, um, fluff egg
Leslie: now. .
Calvin: Yeah. Uh, and, and I liked, you know, I'm, I'm, um, you know, I've lived most of my life in Michigan and I like the idea of, you know, staying a little bit more local.
Um, it seems, seem seemed cool to me. Um, uh, so, but yeah, ultimately, you know, when I, when I went, I mean, Uh, it was just such an amazing experience. Oh, oh, but sorry. Oh, the . The other question was, um, oh, what, um, prompted me to, uh, you know, pursue getting guide doc? Um, uh, yeah, so I, I think. I didn't grow up with dogs.
I, I, I, I, like, before getting Wake, I wouldn't describe myself as like a dog person. I, I, I didn't dislike dogs. I was kinda like, oh yeah, dogs are cool. You know, I'm not, you know, didn't have some, you know, especially strong affinity for, for dogs. Yeah. Um, but, um, I think what I noticed is, uh, in, in the first year or so of going blind, , um, the blind people I was meeting who had guide dogs seem to [00:11:00] be doing really well, and I still can't fully explain why that is.
Like, you know, um, because I think there in, in some ways there is more hassle associated with having a guide dog, right? Like you, you, you have to take, take care of that dog and you have to always be thinking about what the dog needs and, you know, so there's a, there's a, there's a commitment of time and, and effort.
You know, you know, over, over a cane, which, you know, maintaining a cane is , you know, it's just like, it's just a stick, right? It's really straightforward. And yet I just noticed that a lot of the people I was meeting who had guide dogs and, you know, and were blind, like they, they seemed to be just. I kind of looked up to them and they, they seemed to do be doing really cool stuff and, and, and have a lot more confidence and, um, than, um, yeah, than maybe some of the other people's meetings.
So I, um, I dunno, for me, I, it was just, it was kind of like I, I, I didn't fully understand what was going on there, but it just seemed to be, there seemed to be a little bit of a pattern.
Leslie: I'm curious to back it up a little bit. So [00:12:00] before you sat Wake and Change the leader box, there's so many steps in between and it seems like it did happen quite quickly.
So realize you're legally five hours, I've told that you're, you're flying. How did you even know to find services or like what services did you get? Like how did that very first kind of research go or food policy, what's index? Because that's one of the biggest things for clients is that you know, their diagnosis legally binding and they have no idea what people where to go.
What was that process like for you? How did you figure out those next steps?
Calvin: Yeah. Um, so, um, one of the things that happened was that, um, uh, one of, one of my doctors at the Kellogg, um, eye center at, at um, uh, Michigan Medicine did put me in touch with like, uh, you know, like a vision rehabilitation therapy center.
Um, and I think that definitely kicked off some things, you know, in. , you know, starting to think about [00:13:00] assistive technology and, um, uh, so that, that definitely helped. I, I also happened to have a second cousin who's, um, blind from birth, uh, from, uh, an unrelated, um, uh, condition. And, um, that was really helpful to, like, I started learning braille within maybe three months of going blind.
And she helped, also helped me get started on, um, on using screen readers. So, um, yeah, I, I, I definitely feel like I was, you know, got pretty lucky in that there were, um, yeah, people in my life who were able to, uh, you know, speak to what resources are out there. . Um, and, and how to yeah. Get connected with, um, you know, government resources as well, cuz all, um, you know, leader Dog has, you know, wonderful, um, orientation, mobility or, you know, white cane program.
But, um, I, um, which I, I, I think I initially applied for, [00:14:00] but um, because of lockdown and stuff, I ended up being able to get it more quickly, um, just because it was 2020 or 2021 and things were really. Um, , I ended up getting it through the state, um, uh, like at my house, um, um, pretty quickly. Um, so that, that ended up working out, um, really nicely.
Um, so I don't know, I, I, I think I got, kind of got, um, lucky in some ways in that like, um, uh, you know, Michigan had, you know, a certain amount of resources and that that did become available to me in. like learning, um, skills of blindness and, and I also, um, you know, was related to someone who had, had been through this whole journey and has mastered all these skills.
Yeah, that
Christina: is so good to hear that you had someone who had gone through it themselves to help you. Cuz a lot of times, you know, sometimes when clients come to campus, that's the first time they are meeting somebody else with a vision impairment. So that's great. Um, so, you know, you said you weren't. a dog.
You [00:15:00] like dogs, but you, you never had a dog growing up. So what's it been like to work with Wake? What's it been like to
Calvin: have a dog? Oh, it's, it's amazing. I really did not know what to expect coming in. Um, and, and in some ways I think that's good because I think having a guide dog is really, really different to having a pet dog.
Um, and, uh, um, so I didn't really have any preconceived notions of like how to interact, um, because yeah, I, I think, you know, , I think to have a guide dog who, who's, who's really doing great work, you have to think really specifically about how you're interacting with them and, um, whether or not you're setting a, you know, a good or a bad precedent in terms of, um,
Yeah. And they're training. I mean, they're such a, you know, they're, they're like such, uh, highly trained animals. I mean, it's, uh, uh, but yeah, I think I, you know, I had such wonderful instruction, um, from Kevin Orke and, you know, I felt, you know, pretty equipped to, you know, to take on all that stuff. But yeah, I guess, um, [00:16:00] I mean, uh, I guess like, I think one of the things that really surprised me was the way.
um, how intuitive a lot of this is to, to my dog wake. Like he isn't a machine and it's such a good thing, right? Like he, um, will be in an environment that he's never been in and, um, he'll, he'll just be able to understand the difference between a driveway and an intersection. Or, or like, you know, we'll be going walking on the beach or hiking and Yeah.
I mean, it's, he's not trained or like, it's not possible to train him to recognize every possible, you know, problematic feature that, that we could run into. But he just has a general sense of like, oh, I think if, if, uh, if Kelvin walks into this, he's gonna get hurt. Right? Like, so I, I think he's kept me like incredibly.
Leslie: So Calvin, I find that so interesting and I love that you said that awake isn't a machine. Cuz one of the things [00:17:00] that we get asked all the time is like, , you know, do, are we worried about basically losing our jobs or that they're not being a need for guide dogs? Because with all of the technology and robotics and things like that, people are always saying like, what if there isn't a need?
But I think what you just said right there is that there will always be a need, right? These don't aren't machines. They're so intuitive. They're making choices on their. Their own brains, um, to decide what to do in certain situations. And of course we know the companionship on top of that. You know, a robot's never gonna see that.
But I love that you said that because I swear I was just asked that question last week at a technology conference of, well, when will robot dogs basically take over for guide dogs? Then you're your thing. That's not an object. .
Calvin: And, and one of the, the funny things that I totally didn't anticipate is, And didn't think about.
It's like dogs have incredible senses of smell and that actually comes into play occasionally. Like, um, my grandparents had moved into a retirement home and wake [00:18:00] and I had never been, had never seen their place. We never been there. And, um, but we, but Wake had met my grandparents, uh, a number of times, and so we're walking to the corridor in this, uh, you know, retirement home, and he suddenly just like pulls over to a door and it turned out to be where my grandparents had just moved in.
Wow. And, you know, just stuff like that. I mean, uh, you know, I, I think he, he's just very intuitive and he's, uh, you know, and, and has a sense of like, oh, I, I, I bet this is what. Kelvin is trying to do, he's trying to, trying to hang out with his grandparents and I smell his grandparents and
Christina: stuff. . That is amazing.
Oh my gosh. It's so cool to hear different stories like that. Um, Kelvin, I wanna talk a bit about, because you're a mu musician, what is that like for you, you know, now having Wake with you and how has, um, that changed for you?
Calvin: Yeah. And this is something that, you know, every d guide dog's going to be different.
Um, and I know that Kevin had worked to find a, a dog for me that did [00:19:00] have a really high tolerance for noise. And yeah, wake, I mean, we've been to, um, you know, big cities and, and I, I even did a , uh, a week long drum intensive where, or jazz drumming intensive where everyone's drumming and it's super loud. Um, and Wake did not care.
He, he, he just really, he's really great about noise, which is, is, is great cuz I, I do, you know, um, as, as a musician, like yeah, occasionally has some, some noisy environments and there's, there's no way to kind of get around it. Um, so he happens to be extremely good about that. And, um, yeah, I don't think he really.
Uh, I, I don't think he really cares if there's music on or not. I don't know that he's a, um, you know, uh, like a big music lover or something. I think he just really care, which is great. Like he'll just, he'll take a nap next to, you know, next to a drum set and, and just not care. It's, he's amazing like that.
Um, uh, so, uh, yeah, it's, he's, yeah, we're, we're well-matched in that way.
Christina: Yeah. And. [00:20:00] Amazing for you cuz uh, you went to Princeton in 2019, so that was before your vision loss. So what was it like for you to transition, you know, to still be a musician after, you know, you were noticed, you were losing your vision?
Calvin: Yeah, I'm, I'm still trying to figure out if there's, um, you know, some way for me to be a, a professional musician with vision loss. I mean, being a professional musician is always, Hard, regardless of kind of what your, you know, what obstacles are in your way. I mean, it's just a really competitive industry and there aren't a whole lot of, um, jobs.
So, um, uh, yeah, I, what I did run into losing my vision is that I, I couldn't read music anymore, which in some musical disciplines doesn't matter a whole lot. Um, uh, you know, um, and obviously, you know, um, you know, Stevie Wonder, or, I mean, there, there have been really, really successful. And even in the classical tradition too, there have been some really successful musicians who are blind.
But I think based on what, like little neck of the woods I was in, in classical [00:21:00] music, which is doing a lot of, um, you know, um, you know, composing, but also, um, you know, playing cello. And a lot of it is, you know, you have to learn music really quickly. Sometimes you have to site read. And, um, I, I think that isn't something that, uh, you know, that there's.
Um, there's not a clear way for someone who can't read music to participate in, um, the exact activities I was doing, but doesn't have to say, I dunno. I've, I've continued to make music, so like I've been working on, on, um, on, on drumming. I've, I've been having a lot of fun playing drum set in various contexts and, um, uh, you know, I'm not anything close to.
um, uh, you know, where I would hope to be in terms of skill, but it's been a lot of fun just to, um, uh, continue to perform. And, um, but yeah, and, and thankfully, I mean, I, you know, as much as I love music, I do have a lot of other interests and, um, and I think it's, um, I think it's, I don't know. I've come to peace with the.
fact that I think my life is going to have chapters and they might be pretty different, you know? [00:22:00] Um, I, I really enjoyed, you know, spending all of my time doing music and that was really great. Um, uh, and right now I'm doing yeah, some, yeah, a lot less music, but I'm, I'm still having a, a wonderful time and focusing on different interests.
You not
Leslie: only are focused on your music, you've got Leader Dog Wake, but do you mind telling us a little bit about your job? What is it you do and how cool and all?
Calvin: Yeah, so I, I work at More Canvas Consulting and, um, I, I'm an accessibility consultant, so. . Um, I work with clients in, um, especially on their websites, but sometimes, you know, also with their social media or with their, you know, document sharing practices internally, um, and, and newsletters and things like that.
You know, how to make sure that, um, uh, that, you know, companies are communicating in the digital space. Accessibly, um, um, so that, you know, people with various, um, disabilities and impairments and, um, and even people who have maybe a little bit different technology, like, you know, maybe they're on an older device or slower internet, [00:23:00] things like that, um, that they're able to participate, um, and, um, and be on equal footing.
Um, so yeah, I think it's a, it's, you know, definitely not something I ever. It wasn't something that had crossed my mind really before I lose my sight. I didn't know what a screen reader was until , until I was blind. Um, and, um, uh, so, and I, I do think it is from that perspective, I think it's kind of interesting working in accessibility because, uh, like at some level I can't be too frustrated when people, um, in, in ignorance mess something up.
Um, in terms of accessibility, because, Like, I didn't know the first thing about accessibility and I, and I, I could have like there, you know, I could have put in just like a little bit of time before going blind and just having, and have a sense of, oh, here's how, you know, people with, you know, this type of impairment, you know, interact with, you know, this type of, um, you know, digital environment.
Um, uh, so [00:24:00] I, I, I think, um, yeah, um, it's, it's nice to be kind of an ambassador, but yeah. Maybe one who uh, yeah, can, can speak to both the experience. Being very frustrated with, um, inaccessible digital, uh, uh, you know, uh, practices, but then also, um, you know, kind of knowing that it's very easy to be ignorant of the genuine needs of communities.
Absolutely.
Leslie: You know, and I wouldn't feel guilty about that, cuz I would say that's the majority of the world, right? Unless you need to know something or going out of your way or you know, somebody with a disability, most of times you're not looking in into, you know, how does somebody who's blind or visually prepared use their computer?
It's just not gonna be the top of your thought. Uh, but I think that's really cool that you've gotten into that and that you're now helping other people along the way and making. You know, things accessible to everyone because it is so important and it's something that we all need to strive to do. So I absolutely love that.
I wanna thank you, Calvin, for showing up and, uh, sharing all of your wisdom and your experiences with your music and wake and, and your [00:25:00] work. Um, I think it's absolutely incredible. So thanks for being here today. Thanks for having me. Yes. Thank you so much. For our listeners to listening to the Taking the Lead podcast, I am Leslie Haskins with host Christina Haner.
We hope you enjoyed hearing all about all of the things Kelvin is up to, and please join us next week as we continue to dive into the world of
Christina: blindness. If you'd like to learn more about applying to Leader Dog for our free services, you can head to litter dog.org or call us at eight eight eight seven seven seven five three three.
And 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. This season of the Taking the Lead podcast is brought to you by a longtime supporter of Leader Dog, the Mary p Dian Hellan Foundation.
As you may know, generous donors like this one make it possible to achieve our. The Mary p Dolche Halloran Foundation supports the study of mathematics and [00:26:00] mathematics education. For more information about our generous sponsor, visit their website at www.dolhalloranfoundation.org.