Cast Member Spotlight: Dan Mancina

On today’s episode, we’re continuing our series of spotlight episodes featuring the incredible cast of The Dot Experience.

The Dot Experience is a new inclusive museum opening this October. It features more than 20 individuals who are blind or have low vision, each sharing authentic stories.

The cast includes advocates, artists, professionals, athletes, students, parents, and workers, highlighting the many roles blind individuals hold in society and showcasing vibrant, diverse lives.

And today, we’re learning about Dan Mancina. Not only is he a Cast Member for The Dot Experience, he is also a skateboarder… and today we get to hear his story. Hello Chris and welcome to Change Makers.

On this episode

• Narrator
• Sara Brown, APH Public Relations Manager
• Dan Mancina, The Dot Experience Cast Member and Skateboarder

Additional Links

• The Dot Experience
• Dan Mancina on Instagram
• Email Change Makers

Transcript

Narrator 0:00

Welcome to Change Makers, a podcast from APH. We're talking to people from around the world who are creating positive change in the lives of people who are blind or have low vision. Here's your host.

Sara Brown 0:15

Hello and welcome to Change Makers. I'm APH's public relations manager, Sara Brown, and on today's episode, we are continuing our spotlight episodes of the cast members from the Dot Experience. The Dot Experience is a new inclusive museum that opens this October and features more than 20 individuals who are blind or low vision, each sharing their authentic stories. Cast members are made up of individuals who are advocates, artists, professionals, and more, all showcasing diverse, vibrant lives. And today we're learning about Dan Mancina. Not only is he a cast member for the Dot Experience, he's also a skateboarder. And today we get to hear his story. Hello, Dan, and welcome to Change Makers.

Dan Mancina 1:01

Hi, glad to be here. Thanks.

Sara Brown 1:03

So this is a special segment that we're doing, which we're spotlighting a lot of the DOT Experience cast members. And before we get into that aspect, let's take it back to the beginning. And would you like to just introduce yourself and let our listeners know who you are?

Dan Mancina 1:20

Yeah, thanks. My name is Dan Mancina. Um I have Retinitis Pigmentosa. Um I currently skateboard for a living. I'm fully blind now for about nine years. And uh yeah, I'm from Michigan. That's where I where I reside.

Sara Brown 1:38

Okay. And do you mind to just talk about your childhood, where you grew up? Was it in Michigan? And what were some of your favorite activities?

Dan Mancina 1:46

Yeah, I grew up just I have three older brothers, the youngest of four. And um I grew up in Michigan, um, little city called Warren. Um, and uh yeah, it was kind of really fun growing up, you know, with three older brothers and you know, the neighborhood. We start we I was uh I lived in the neighborhood until I was about nine, then I moved to a different different city. But um as a young child though, I had a lot of fun in the neighborhood we grew up in. And uh yeah, just a basic, you know, my single mom. Um I don't know, that's kind of it. Pretty basic and boring.

Sara Brown 2:27

Pretty simple, straightforward stuff. Nothing really special. Yeah.

Dan Mancina 2:32

I'd say the only thing that I mean, when I was seven, I actually um had an accident. I cut my thumb off. And that was kind of like, I guess, my first, you know, that kind of sticks a kid traumatic memory. Um other than that, just lots of lots of good times with my brothers and causing trouble and stuff like that.

Sara Brown 2:53

Uh, were they able to reattach it?

Dan Mancina 2:56

No, they didn't. I still have half a thumb on my right hand.

Sara Brown 2:59

Oh wow.

Dan Mancina 3:01

I say I'm an amputee too.

unknown 3:03

Yeah.

Sara Brown 3:05

Now let's go into your your vision loss. Do you mind sharing when that first became a part of your life and what that experience was like?

Dan Mancina 3:16

Yeah, it wasn't until I was a little bit older, like 13 years old. I was that's when I got diagnosed. Just went in for your standard, you know. I almost had glasses, went in for my standard, um, you know, check my prescription, all that stuff. And that optometrist noticed something a little bit off, got passed around through a few specialists until I was diagnosed with RP. And um kind of just sat on the back burner for a long time until I was about uh mid-20s is when it really started to actually affect me. Um I had some other, I have some other disorders on top of the RP, like Coates disorder, um, that kind of took my vision very rapidly. First, my left eye, uh, tried a bunch of surgeries, you know, the drill, just going to the doctors every month and just a pain. Pretty much at that point I was ready just to be blind and uh, you know, get this show on the road here. So uh yeah, that it wasn't until uh mid-20s, though that's when I stopped driving. Um, and you know, I considered myself quote unquote a blind person instead of using the white cane and all that stuff.

Sara Brown 4:24

So when did you the early days? So when you were losing your vision or when you were first diagnosed, did you take any sort of steps just to prepare, or did you just wait till it did not happen?

Dan Mancina 4:36

No, I did not. I had I had so much going on that I didn't even my blindness was kind of uh in the uh secondary to everything. You know, I had a child, I had just had a kid at this point. Um lot going on in life in my in my early 20s. You know, I had a son, I had my son very young when I was 21 years old, which is you know, young for nowadays, but um, so I was kind of worried about that and going to college and figuring everything out. Yeah, it wasn't until I was kind of forced to deal with it. I was in school, in college, going for aviation management, my first associate, and that's when um I kind of that coats disorder really uh took the majority of my uh vision.

Sara Brown 5:25

Talk about Coats, you saying coats. Coats is that C O A T S?

Dan Mancina 5:30

I think so, yeah. Coats. It's like like you wearing a jacket. Yeah, coat. Um it's these immature blood vessels in the eye, and immature blood vessels tend to leak. And when the blood vessels leak, um, it just covers the retina so you cannot see. Okay. Um yeah, so that's you know, med surgeries and all this stuff, and then I kind of I finished the degree, like I think I only had like a semester left when when all that kind of happened. And then I switched to uh uh massage therapy. So I went for massage therapy. I thought, you know, I could hands on all that stuff. And uh I worked that of as a career for about a year, and I was not happy doing that, so I I then went back to school for teaching. Um and at this and at this, I know so I grew up skateboarding my whole life. And then mid-20s, when all this happened, all this life is happening. Um, I stopped skating for during this this you know couple of years. And uh uh went and I went back to school for teaching, and at the same time I went for actual cane training, white cane training through Leader Dogs for the Blind here in Michigan. And they have an O O M uh course, and that's when I was introduced to the entire you know world of vision rehabilitation, and um I kind of fell in love with that, um, learned what you know T what a TVI was, an OM, a VRT, and all these things I'd never heard of. I was like, wow, that's really cool. I want to do that. So I switched my you know my teaching and I went to get my bachelor's um as fast as I could, so I did um psychology so I could go into my master's for VRT, vision rehabilitation teaching. Um, and that was my new goal. The same time I kind of started my social media stuff where I was posting videos, you know, I was sick of you know the classic um misconceptions people have for the blind and people treating me differently and all this, you know, stigma and all this stuff attached to my blindness because I still felt like the same person, but I was being treated so differently. And uh my social media Instagram at the time was just about that, just doing things that you wouldn't expect a blind person to do. Um that was everything from like, you know, throwing a bullseye and darts and all these just fun, you know, lawn games and stuff like this. And uh I decided to do a skateboard video, and um that was kind of my one foot, uh, my one step back into skateboarding. Um that video did really well, and uh I did because I never thought I would be able to skate again, like and get the true fulfillment that I once did as a kid and being free and cruising the streets and doing all this stuff. And uh I just kind of slowly happened, you know, by chance, you know, literally social media and getting a little bit of traction on this one video made me want to make another video of skating. And then I kind of slowly realized, oh, maybe I can actually get some more, um, I can actually progress at this and get the fulfillment that I did, that I once did as a as a younger person and uh as a sighted person. Um and I, you know, kind of got that bug back and and fell in love and and um realized that that was a big part of my life that was missing because you know that was my identity for so long was a skateboarder, and blindness had kind of taken that away. Um, but I was able to get it back. And uh yeah, all the same time I finished my master's um for VRT, did my internship, became certified, um, but at the same time I got my first contract for skateboarding through Adidas. And um man, I with my degree in my back pocket, I just went full in skateboarding and it's been full-on skating ever since. And being able to actually live that dream that I wanted to live as a as a young man and and you know, skateboard for a living. And uh it's been a wild journey, yeah.

Sara Brown 10:05

So when you're skateboarding, what was it like get fi the first time you got back on a skateboard after you had completely lost your sight?

Dan Mancina 10:14

Um it was just fun, you know. I wasn't um anything crazy, you know. I guess it was kind of just like that familiar feeling for me of of just having that focus um of just focusing on the skating. So it really let me forget about my blindness, which I loved. Um, you know, as a blind person, I especially in the early days of losing your vision, it's kind of it's constantly a thought on your mind, um you know, not being able to see. And uh let let me forget about that. And I was just focused on the actual one single trick itself. Um, and I felt really good. And uh yeah, that that was definitely the the biggest takeaway from it.

Sara Brown 11:01

Is it any different? Or is you know, are you on a special course? What is it any different?

Dan Mancina 11:08

Yeah, it's definitely different than I used to skate. You know, it's I've had to change um the things that I do on my board a lot compared to how I used to skate. Just skating slower. Um, I'm a more technical skater now. You know, I used to like to jump downstairs and handrails and all this stuff, um, and that's just not as accessible as skating, you know, like a ledge, which is, you know, pretty much like a bench, you know, a really long bench or a curb, I'm sorry, or a flat bar with just a rail that on the ground. And uh I just started at at tennis courts because there's these, you know, perfectly nice contrast with these white lines that I would use to guide me. Um certain times of day would help back then, having good shadows of the actual ledge. Um, and then that changed a lot when I actually lost the rest of my vision and became fully blind, which is about uh probably somewhere around nine years ago now. Um and then I had developed these different techniques where I actually reached down and use my hand and I touch the obstacle, whether it be a rail or ledge, um, which allowed me to uh get a lot more technical and flip my board into different tricks and stuff like that. Um and that changed the game for me. And um yeah, so it's a different style of skating than I used to, you know. I still don't have that freedom of being able to just throw my board down and and you know, cruise down the street and weave through people, which I I love and miss a lot still, but um I still like I said, I still get to be able to just lock into um you know the skating aspect and trying to just figure out these tricks and and just focusing on on that one thing at that time and and that's all that matters.

Sara Brown 12:57

So you're a cast member in The Dot Experience, which is opening October of this year. Talk about how did you first hear about The Dot Experience?

Dan Mancina 13:07

I got the invite um and um learned about the actual you know museum and the hands-on aspect of it and the accessibility. Um, and that's you know, obviously as a VRT trained and I'm all about accessibility and um I built my own adaptive skate park. So I love having things that are made for the blind um as well as well as being accessible for the rest of the world.

Sara Brown 13:35

So no, talk about, you know, so you got the email asking, I guess I'm assuming inviting you to be a cast member. What made you say yes to that?

Dan Mancina 13:44

I mean, a group of you know, showcasing all these amazing blind people around the world, and um yeah, I don't know why would you not want to be a part of that? Um yeah, I love sharing my journey and my story as well. Um and I have friends in it who are also cast members. So um it just it would make um it wouldn't make any sense not to be a part of it.

Sara Brown 14:10

Uh what are you hoping that visitors take away from The Dot Experience?

Dan Mancina 14:15

Um probably the accessibility aspect of it, um showcasing that you know everything can be made accessible in some way. And uh yeah, that's that's my favorite part about it.

Sara Brown 14:32

How do you think the storytelling and the lived experiences or your lived experiences as well as the other cast members will help the guests understand blindness and low vision? Like how do you think that's gonna help them?

Dan Mancina 14:45

I don't know. I mean, I hope, you know, I'm sure people will try to experience it through the you know, the perception of a blind person, you know, and give them that that opportunity to feel, touch, and listen to these things as opposed to um, you know, just looking at a piece of art or something like that.

Sara Brown 15:06

Talk about something you wish more people understood about blindness or low vision.

Dan Mancina 15:12

Um I'd say the number one thing would be um I think we would, most of us would agree with that, would agree with this, that we're just we're just the same as everybody else. Um and that's kind of all we really deep down want is just if we could just go through life and everyone treated us exactly like they treat everybody else, um, life would be a lot easier.

Sara Brown 15:37

And then what advice would you give to someone who is just starting to experience vision loss or even yourself when you said you were in your 20s when you started experiencing your vision loss? What would what advice or just comments would you give?

Dan Mancina 15:55

Um definitely getting my OM cane training uh was a big, big part of me starting my um uh, you know, I could say healing, I guess, or my understanding, and I guess becoming more comfortable as a blind person. Um you know, being in an environment that was actually designed for blind people, you know, I had no idea that there was all these adaptations you could have, and very simple ones that made me feel um I mean, just like a person again, like, oh wow, there's people who actually think about this, and there's ways to make life easier. And yeah, get that training, reach out for that training. I mean, especially in the US, um, you know, it's all free, and you just gotta find, you know, simple Google can help find uh, you know, organizations in your area or organizations that will literally fly you out and train you, you know, all for free. And uh that's a big part of it. So just find that, find that help and it goes a long way.

Sara Brown 17:01

And then my final question that I always like to ask is there anything else you would like to share, whether it be about yourself and your journey or about being a cast member for The Dot Experience?

Dan Mancina 17:11

Um I'm just grateful. Thank you. I appreciate it. I don't think I've told anybody thank you. And um, yeah, I'm looking forward to meeting everybody else and everybody in person. And uh this should be really, really fun. I can't wait till October.

Sara Brown 17:26

All right, Dan, thank you so much for taking time out of your day to join me on this Changemakers episode and talk to me. It was lovely spotlighting you and learning about you.

Dan Mancina 17:33

Thank you, appreciate it. Nice to meet you.

Sara Brown 17:36

Thank you so much for listening to this episode of Change Makers. I have put links in the show notes with additional information about Dan, as well as a link to the website for The Dot Experience. Do you have a podcast topic suggestion? I would love to hear it. Send it to me at changemakers @aph.org. And as always, be sure to look for ways you can be a change maker this week.