The Blind Life: Tips on Technology and Low Vision

Hadley Presents

The Blind Life: Tips on Technology and Low Vision

Presented by Ricky Enger

Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger, inviting you to sit back, relax, and enjoy a conversation with the experts. In this episode, we discuss technology and navigating life with low vision. And our guest is YouTube personality Sam Seavey. Welcome to the show, Sam.

Sam Seavey: Hey, Ricky. Thank you so much for having me.

Ricky Enger: Absolutely. It's awesome to have you here. Now, of course, I introduced you as a YouTube personality, as if that were the sum total of your existence. And it's not, so before we jump into things, why don't you just tell us a bit about yourself and how you came to do what you do, both in terms of YouTube and kind of what you do outside of that?

Sam Seavey: Well, first, I actually prefer YouTube Superstar, if you don't mind. You should have gotten an email before the show, letting you know that's what I preferred to be called. But no. Well, yeah, so it's a very long story how I got to this point. People always like to kind of hear my vision story, I guess you could say. I was diagnosed at age 11 with Stargardt's disease. It's kind of an early onset form of macular degeneration kind of, except that it's a inherited retinal disease. So, myself and my sister both got it. We're the only two kids in the family, and we both drew the genetic short straw and got Stargardt's.

Actually, I was just up in Philadelphia doing a presentation this past weekend and I told the crowd that and I got a lot of, "Oh, oh, that's too bad." And I said, "You know what? Yeah. Maybe at first, you might think that, but it was actually a good thing because at least I had somebody there to kind of go through all of this with, to grow up. And we were both going through it and experiencing it together, and we had each other's backs. So, it actually made it much easier, I think." Fast forwarding, skipping all the drama of going through the public school system and all of that with low vision, which we can... Maybe that'd be the next podcast.

I started making videos on YouTube back in, or right around 2010, I guess. I started making videos for another YouTube channel, some guy down in Texas who made videos about mobile technology, namely Android systems. And he needed help making the videos and I needed a job. And I specifically needed a job that I could tailor fit to my own needs. And I thought, well, this might be it. I could set up a rig, camera rig in my house. I actually had a camera strapped to my CCTV pointing down at the table. So, as I was seeing the phone, because I was reviewing apps and phone software and stuff, as I was looking at the phone on the screen of the CCTV, the camera was also recording the phone screen for my YouTube video.

So, it worked out perfectly. And I did that for several years making videos. Those videos are still out there, people can go check them out. The channel was called Mobile Tech Videos 2, numeral two. There are super old now, they're probably, none of them really are relevant anymore, but you can go check them out.

And then shortly after that, I started my own channel because there was a real lack of information on YouTube at the time about people living with low vision. And I especially was looking for information about Stargardt's and I couldn't really find anything. So, I thought, well, maybe I'll start documenting my life and just see what happens.

Ricky Enger: Yeah. If there's not content out there that you're hoping to see, why not create it yourself? And it looks like that's really been a success. So, your YouTube channel is called The Blind Life. There are lots of great videos there, really spanning a whole range of technology and devices and things. So, what kinds of things can people find on your channel?

Sam Seavey: My main focus is assistive technology, because I'm, in my day job, I'm an assistive technology specialist. I work with clients every day, teaching them how to use technology and software and all of that. I've used technology since I was a kid, assistive technology. So, it's what I love. So that's the main thing you could find on there, product reviews, technology reviews, tutorials. But I also like to focus on the life side of the blind life and the everyday life and helping people navigate those waters. My videos are really helpful for people who are new to vision loss.

Maybe they're seniors losing vision later in life, AMD, age-related macular degeneration, diabetic retinopathy, those types of things. And they don't know how to be visually impaired. It's not something we're born with knowing unless you're born blind obviously, but it's something you have to be taught. And so, I have tons of tutorial videos, even little things like how to scramble some eggs, how to crack open an egg without getting shells everywhere. Because if you get shells in your eggs, you're not going to be able to tell until you bite down into it, so...

And I show accessible products as far as even everyday household products. I have a whole series called My Accessible House where I featured things that I've done in my house to make my life easier, extra lighting, bright lights in cabinets, motion-activated lights in certain areas whereas when I just walk in, the light automatically turns on. So just things like that.

Ricky Enger: That's fantastic. And I think it's incredibly useful for people, as you say, who are new to vision loss or even people who may have been at this for a while, but not everyone can buy or review everything. And so having a place to go where someone has taken a look at various things or used even standard things, I suppose in a unique way to help with vision loss, I think it's really helpful for people. Are there things that you have learned along the way? I mean, you've been at this for a little while given that you were diagnosed at 11. So just along your own vision loss journey, are there things that you didn't initially know that you've learned along the way that have really helped you to be maybe more efficient or get things done in a different way than you did as a child?

Sam Seavey: Yeah. So, I, as I said, I was diagnosed at age 11. I was legally blind by my early teens. And much like a lot of people who are in a similar situation where I'm not totally blind, I do still have partial sight and I still have some usable sight. So, unless I'm walking around with my cane, people might not instantly recognize that I'm visually impaired or have a vision impairment.

I always say we're kind of riding the fence between the sighted world and the blind world in that situation. It can be difficult, especially in my twenties. I really didn't want to be vision impaired. I wanted to be just like everybody else. I didn't want to be different. I didn't want to stand out. I struggled with that like many, many people do in that situation. It's exhausting. And I was probably in my thirties before I finally just said, I'm done. I'm done pretending. This is who I am. There's nothing wrong with who I am. It's perfectly- It can't be fixed. My condition is incorrectable. There's no treatments.

Why am I wasting my time trying to be something not? I just need to embrace it and live my best life. And so, when I finally did that, it was like a weight off my shoulders, and I could just start enjoying my life and living for the day. So that's probably the biggest thing I have learned is to not sweat the little things every day. And don't get me wrong, I'm not completely well-adjusted. I still have my bad days. Well, like we all do where I'm just like, "Oh, I hate being blind." Anytime I want to make a meal and I have to go find my magnifier in order to read the box. I have to go searching through the house now to find a magnifier just so I can make this real quickly. It's like, ugh, come on. But at the end of the day, I don't let things like that get me down too often. Or if I'm walking around outside with my cane and I see somebody is kind of giving me a weird look, it doesn't bother me because it's just, I know who I am, I know my own worth, I know what I'm capable of and that's more important to me than what some stranger might think or say or... So, own your own truth and be yourself and go out and reach for your goals and live your life. That's kind of what I've learned.

Ricky Enger: And is that something you wish someone had told you as a child? Or maybe you wouldn't have been ready to listen to it at that point, it's something that you had to learn along the way. Is there anything beyond that that you would say to somebody who's brand new to vision loss and they're just in that period of figuring out what life is going to be like and figuring out all of the challenges that do come with vision loss? Is there one thing that you could say to them that might make things just that little bit easier?

Sam Seavey: You're right. I don't know if I would've listened to someone at that time in my twenties. I credit it to my wife and her tough love telling me I was being ridiculous and to knock it off.

Ricky Enger: We all need someone like that in our lives, right?

Sam Seavey: Absolutely, absolutely. But what I tell people is, and I get these comments usually on Facebook, and it's usually from parents of children who have recently been diagnosed and they're really struggling because they can't imagine what their child's life is going to be like. They can't see it.

And all they can see is all the things their child won't do, all the dreams they had for their child that they think won't happen now because of the diagnosis. And I've actually made a whole video, “What Comes Next.” And the very first thing I say in that video, and it's the very first thing I tell people all the time is, it's going to be okay. It's going to be all right. I know it's scary, I know it's terrifying, but it's going to be okay. Your child or yourself, you're going to be alright. You're going to get through this. Vision loss is just learning a new way to do things.

And once you learn those new ways, you can do whatever you want to. Now don't get me wrong, it's not easy and it's going to take some time. It's a marathon, not a sprint. And you're going to have those bad days and you're going to have those emotional days and that's totally fine. Like I said, I work a lot with people who are losing vision later in life and I tell them, you're going through a grieving process because you've lost something. You've had this your whole life and now it's starting to go away. And so, there's that feeling of loss. And you got to go through all those different stages of grief and that's perfectly normal.

And you have to do that in order to come out on the other side. And you don't have to rush it. You can take as much time as you want, but the goal is to keep moving forward and to come out on the other side. I was just actually at this conference that I just mentioned over the weekend, one of the other speakers, Kristin Smedley, who is amazing, Thriving Blind Academy. She's done a TED Talk. She's fantastic. She has two boys that have LCA, were born with LCA. And so, they are two blind sons.

One thing she talked about is you're coming to your grief, and you've got your bags, and are you just staying for a short time, or are you going to unpack and you're going to live there? And then she said she lived there for a long time before she finally came through it. And that's what I tell people. I was like, "You can stay there as long as you need to, but you have to get through it at some point. You can't live there because that's not doing anybody good. That's definitely not doing you any good."

Ricky Enger: Thank you for that. And it's such an important thing to acknowledge that not everybody's adjustment period is the same. There's this feeling I suppose that, okay, there's this timeline and if you haven't made it through your adjustment period in that timeline, you're totally doing it wrong. But no, it is such an individual thing. And the thing to keep in mind is just to keep moving forward, in the end, you'll get there, and you can do things.

Sam Seavey: It's mostly about determination and having that drive to do that. And I tell people all the time, it's just a matter of learning the new way to do it, the new normal. But once you do, you can achieve amazing things.

Ricky Enger: So, the last question I have is probably no surprise to anybody who has listened to this show before. And I want to talk about gadgets because I really love them and I'm into technology. You've had the opportunity to review a number of things on your channel. Sort of the premise of the channel is navigating the blind life. So theoretically at least some of these devices have made their way into your everyday rotation. There are things that you pick up and use on the daily. So, are there a couple of gadgets or devices or whatever that you really love, and what are they and what makes you love them?

Sam Seavey: Yes. I have been very fortunate to try just about everything out there to the point where companies send me new things and prototypes and so I get to see them even before they're out there for the rest of the public, which is really cool. But yeah, I've got a couple tools in my tool belt that I use every single day. I still, like I said before, I still rely heavily on magnification. So, I have an Eschenbach pocket magnifier. I think the name brand, or the name is Mobile Lint or something weird like that, I don't know. But it's just this little 12, I think it's a 12X pocket magnifier. The lens is about the size of a silver dollar or half dollar, which is actually the largest size lens at that strength that I've ever been able to find.

And Eschenbach just makes really high-quality magnification, magnifiers. This guy is with me in my pocket at all times. I just picked it up off my desk. Audio description, Sam just removed the magnifier from his desk. Even when I'm sleeping, it's on the nightstand next to me. If I take a shower, it's on a counter, bathroom counter. So, this is always within reach. But for those things that I can't see with a magnifier, I actually really like the OrCam. I use the OrCam Read, and it's the handheld version of the OrCam. It kind of looks like a large magic marker and it has physical buttons, which makes it easier for a lot of people to use. That thing is great. I think OrCam is really leading the way in OCR technology in the market as far as speed and accuracy.

And it's all offline OCR, which means there's no issues with security. I can scan my bank statement and nobody else is getting that information, it's just me. So, it's great.

Ricky Enger: Right, for me, OCR is probably the best thing since sliced bread. You know, we’re tech people so we’re just throwing these acronyms around like and people are probably like “uh, what is OCR?” So, it stands for optical character recognition, but what it does is it will take the print like on your product boxes or brochures or birthday cards or books or whatever. It will convert that print into text that you can then have read aloud by your device, or it can be a document that you save, so yeah it is really powerful stuff and OrCam is great at this. You probably have other devices that do this too, right?

Sam Seavey: Obviously, I've got a smartphone. I actually have two smartphones. I carry around an iPhone and a Samsung phone. Since I'm an AT trainer, I have to know how both systems work, Android and iOS. So, I carry both phones. And I see the benefit in both. If anybody's curious- my opinion on Android versus Apple, I do have videos on those that debate, that's raged for eons. And then I guess I don't use, actually, I don't use too much technology in my everyday life. I'm a cane user. I mainly use my cane for identification.

I have night blindness, so if it's low light situations, I use my cane for detecting changes in the ground, terrain and elevation, and all that steps and curbs and stuff. But I use the Omni-Sense cane tip, which is my favorite cane tip. It's a rolling cane tip. Has wheels that can roll in any direction. It's really allowed me to do some pretty cool stuff. I actually have videos of me skating around a skate park going up and down the ramps using the Omni-Sense tip, which is something I've never been able to do because I can't see the ramp. I can't tell where it is. But the Omni-Sense, because it rolls so smoothly, it lets me know when the ramp's going up before I get there, and it works great.

Ricky Enger: That's awesome. And we'll have links to all of the products mentioned here in our show notes as well as to your website and YouTube channel. So, The Blind Life YouTube channel. TheBlindlife.net, I believe is your website. Yeah. Lots of stuff clearly that people can find, videos on technology and of course, videos of you skating around and all kinds of just amazing fun stuff. Any final thoughts that you want to leave listeners with as we wrap up here, Sam?

Sam Seavey: Learning anything new is all about getting the information and sticking with it. Practice, practice makes perfect. That's no different from learning some new technology or learning how to use a cane, anything. The more you do it, the easier it gets. So just stick with it. It will be frustrating at first, just like everything is learning something new, but slowly it gets easier and easier. And definitely check out my channel. I have over 700 videos on my channel, all about this blindness and low vision. And I love Hadley, big fan of Hadley.

Ricky Enger: We love to hear that, for sure. Thank you. And thank you for spending a little time with us and certainly those videos will keep our listeners busy for a good little while. Thanks again, Sam, for stopping by and chatting and sharing your story.

Sam Seavey: That was my pleasure, Ricky. Thank you so much. Anytime.

Ricky Enger: Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at [email protected]. That's [email protected]. Or leave us a message at 847 784 2870. Thanks for listening.