Retinitis Pigmentosa with Lance Johnson

Episode 34 November 02, 2020 01:12:36
Retinitis Pigmentosa with Lance Johnson
Freewheelin with Carden
Retinitis Pigmentosa with Lance Johnson

Show Notes

Retinitis Pigmentosa with Lance Johnson


Who is Lance Johnson? 

In this episode Lance and Carden talk about:


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@lancekestrel @seethroughpod

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Episode Transcript

Speaker 1 00:00:04 Hey, and welcome to freewill with carton podcast. I'm your host, Carter and wife Hoff, and we share stories of people disabilities. Talk about inclusive practices and share experiences with adaptive equipment and break down stigmas and barriers for people with disabilities. Today, I have Lance Kestrel Johnson, who is a 30 year old transplant from North Carolina, living in Brooklyn, New York, where he works as a video editor. Lance has a degenerative eye disease called retinitis pigmentosa, also called RP for short, RP is a degenerative eye disease, which over time causes a loss of vision symptoms include trouble seeing at night and decreased peripheral vision, which is your side vision as peripheral vision worsens. Some people may experience tunnel vision for Lance. He currently has most of his central vision and has difficulty seeing at night, since he was diagnosed with a disability, it is made him interested in the disability community as a whole. Speaker 1 00:01:09 And he went on to be an advocate to create a podcast called the see-through podcast, where he discusses various topics of interest with people from the disability community, similar to myself. So it was really great to interview another disability podcaster. And also as you haven't downloaded the app, I access life. It's a mobile app found on Google play and iTunes app store where you can rate interview places on accessibility in the built environment to break down those barriers, use referral code carton, which is my name when signing up. All right, I'm going to kick it off with the episode with Lance Speaker 0 00:01:51 <inaudible>. Speaker 1 00:01:54 Hey Lance. Thanks for joining the podcast. How's it going? Speaker 2 00:01:59 A carton it's feels good to be on, uh, this side of things. Speaker 1 00:02:03 Yeah, it's so great. We had an awesome conversation for those who don't know I was on Lance's FOD cast, the see-through podcasts just the other week. And we are both podcasters doing like flip flopping, um, just thawed casters who have disabilities and sharing each other's stories on each other's platforms to just increase awareness and broaden that reach. So check out my episode on lances and then, and then you'll be hearing from Lance's point of view here. So Speaker 2 00:02:39 Yeah, this is my first podcast interview ever. So, Speaker 1 00:02:43 Wow. I feel so honored. It's great. It's kind of weird, right? Being on the other side of it, Speaker 2 00:02:51 It feels weird and flow. It's funny because right, right up to this moment, I was like, I was like, man, I feel nervous. Speaker 1 00:03:01 Yeah. Speaker 2 00:03:01 I hope I say stuff. That's interesting. I hope I'm interesting enough to like someone to listening to me talk. There's a lot of pressure. Speaker 1 00:03:10 Yeah. There is. Especially because you don't know how the interviewer necessarily is going to ask certain questions here. Not given to you ahead of time. Oh, sorry. Didn't mean to cut you off. What'd you say curve balls? Are you going to throw me all kinds of things? No, my, I think some of our listeners know my brain just operates at like a million miles an hour. So I just have, I never, I like to ask questions and like send them off. I used to do that in my very early episodes. And then I realized it just was like very choppy, but it just, it flows better with just the way that my brain operates in all weird ways. Speaker 2 00:03:53 And I'm still learning how, how to interview on my end. Like sometimes I have the questions kind of laid out on my end and then the interview starts and then I basically abort the mission of those questions. And sometimes I end up going almost like a script through the question. So it's it is, it is. I feel like it's dependent on your mood and who you're interviewing. Speaker 1 00:04:18 Oh, a hundred percent. Yeah. Especially the person that you're interfering, I think plays a big impact on that. Just because it's, you don't know, sometimes they're very conversational and they can talk for an entire hour. And I've had guests that it's like pulling teeth, trying to get answers more than just five seconds. So yeah, Speaker 2 00:04:39 Those guests let's call them out. No, Speaker 1 00:04:42 Every interview is unique and important and empowering. All right. Well, let's dive into what our listeners want to hear, and that is your story of strength. And, um, we understand from the intro that you have retinitis pigmentosa, which is an eye, uh, genetic and degenerative, I just order and let's, let's hear your story about that. Speaker 2 00:05:15 Yep. So retinitis pigmentosa, you know, similar to, uh, you know, I still can't pronounce, uh, F S H D uh, the Speaker 1 00:05:27 Specific, Speaker 2 00:05:28 The specific word. I still can't pronounce yours, but yeah. So similar to that, it's a kind of a mouthful, retinitis, pigmentosa. Yeah. And I, I was diagnosed with it when I was around 12 years old and it's an odd diagnosis. It wasn't because I was having any symptoms. It was just because my mom has retinitis pigmentosa and you know, and Oh yeah. For the record, people call pigmentosa our RP for short. So I'll probably start using that just to make it easier on my, my, uh, tongue, Speaker 1 00:06:06 But it's an awful, so Speaker 2 00:06:08 Yeah, my mom has RP, so I think it was just on my, like I, optometrist is radar to kind of keep an eye out for, I guess, red flags. And at 12, I, they noticed some red flags. So this was like my local eye doctor. And they wanted me to get, I guess, looked at by a specialist. So I went to an eye specialist, a retina specialist, and they confirmed that. I had inherited RP from my mom and I was 12 years old. And at the time I didn't really know, I wasn't experiencing any symptoms. They basically were able to just kind of look at the, the anatomy of my retina through some photography they took and just could tell that I had it, I, I don't know the exact science behind it, but they were just able to tell, and it was odd because my vision was completely fine. Speaker 2 00:07:09 I'm young, I'm like in seventh grade. And when you're that young stuff like that doesn't really sink in or, or whatever. And I remember not even doing that, not even being that upset by it or anything, but I could tell my mom was because she kinda knew what was looming up ahead, so to speak. And, but yeah, and from 12 years old, I was completely fine. You know, I went to high school. I was complete, honestly, no, no symptoms that I remember, you know, I had a driver's license. I played high school sports. I played football. I played tennis. I had no, no issues until about when I was about 22 years old. And just started noticing that it was harder for me to maneuver and in darker settings, because a symptom of retinitis pigmentosa is night blindness because your eyes don't really adjust to the light in the room, you know, your eyes typical, you know, your eyes dilate and adapt to how much lights in a space, whereas RPA kind of, it's kind of dysfunctional in that regard. Speaker 1 00:08:29 Got it. So transitioning from light to dark or is it to light both. Both ways. Speaker 2 00:08:35 Yep. Well, it's, it's mainly from light to dark. If I walk into a movie movie theaters, like the kind of the standard example, Finding my seat in a movie theater is essentially like, I might well be walking around Speaker 3 00:08:57 In the dark, you know, you know that sometimes I have to wait for key moments, like a daytime scene so that the screen illuminates that Speaker 1 00:09:08 A night glow. Speaker 3 00:09:10 Yeah. So, but you know, and it makes going to movies kind of weird. I get there early and I tend to not like get up to go to the bathroom. And usually by the end of movies, I'm like, all right, let's get out of here. I gotta Speaker 1 00:09:28 Drink too much, too much popcorn. Speaker 3 00:09:31 Exactly. And, and, but yeah, my eyes don't adjust that well. And darks in it, settings in our member in college, I went to, um, I'm from North Carolina and I went to the university of North Carolina at Wilmington and I was on, I was at Wrightsville beach and there was like a meteor shower going on. And I was there with some friends and they kept spotting media, uh, or like shooting star after shooting star. And I could not see one to save my life. And I remember being, getting flustered and like, not, not registering that maybe, maybe RPS is starting to have an effect on me. And then, you know, looking back on it, I think that's like the first time I can like state a, a moment where, where it, if it affected me and ever since then, you know, I still have majority of my central vision. And you know, I'm not sure how much you, you, you addressed this in like the intro, but, you know, retinitis pigmentosa affects your peripheral vision. So essentially it's, it's like the opposite of Stargardt's disease. It's I see the sin, I have central vision, but my peripheral vision is kind of closing in almost like you could call it tunnel vision. Speaker 3 00:11:05 And, uh, you know, over time, my, my tunnel got smaller. Speaker 1 00:11:10 <inaudible> so kind of like, if you, like what we did in elementary school, we made little telescopes with what, what are they called? Uh, toilet paper and paper towel rolls. So if you were to like, look through one of those, is I kind of the prevalent, I mean, just to given a general idea, obviously, Speaker 3 00:11:34 You know, it's like, you know, it's like you make a, you ever see it's like a behind the scenes footage of like a film director. And he's like, Whoa, holds up makes, is like a square with his hands, any like holds up the frame and he squints one eye and like, it looks through it. It's Speaker 2 00:11:54 Like whatever's in that square window that he sees in that frame is kind of like the field of vision. You'd have almost like the, through the lens of a camera, you know, like what you see is what you get, you know, there's no, like if, if something isn't into the frame, then you're not, it's not going to be in the shot. Right. So I don't know if that's a good example. Speaker 1 00:12:21 No, it's a great example. It's a very, it's very visual and very descriptive. I mean, not, it paints a picture for me. What, what that I, what it would be like for you. Speaker 2 00:12:33 And another thing about it too, whenever it gets dark, that field of vision, that tunnel gets smaller. So basically the dark, like it's, it's like my enemy, you know, the darkness is where, you know, RP comes out in full force, you know, and sometimes during the daytime, I feel like, you know, I'm like almost sometimes I forget, you know, I don't know if that's because it's normal, normal for me, you know, I see what I see every day and it's becoming normal, but I tend to only remember I have RP when it's dark or when I run into something I didn't see. Which is quite often Speaker 1 00:13:21 When it's right. No, I mean, your, your normal is your normal. Right. And you live it every day. And that is, I think for me, when I always get on other podcasts and people always ask me, you know, you know, walk me through a typical day of how do you get dressed in the morning and how do you do this kind of stuff? I'm like, I don't know. I just put on my shirt. I just, I do it a certain way in a certain position for like, I do it. Right. So your normal is your normal and exactly. You don't really notice things until someone actually asks you specifically. Yeah. So again, I totally relate on that. Speaker 2 00:14:01 And then, yeah. And then part of you wants to, to like, be asked those things, because you want people to understand you, but also part of you wishes that no one had to ask you anything. And, and sometimes, you know, if it's, if it's someone really close to me, I'll, I'll, I'll tell them about it and have them look up. I'll suggested them to do some research that way I don't have to do it. I don't have to give them a lecture. Like, you know, retinitis pigmentosa one Oh one here, let me teach you everything about it. And then it's like, I'm the only source of your knowledge on this. And I guess my recommendation would be, you know, if you, if you have a disability, don't, don't Speaker 3 00:14:53 Depend on yourself to educate everyone about it, you know? And I think that's good. Cause that's why I started my podcast. And that's why I feel like you have your podcast is it's just awareness. And you know, it's like, it's, if it's a topic that only you want to want to teach and only someone's only gonna hear it from you, then I think it is good to, to, to use your voice in that regard. But wouldn't it be so much nicer if, if, you know, for example, if you're into, if you're into like climate change, you know, there's so many documentaries, there's so many articles that you can watch and learn and books to read, and it would be cool if people did that and dug into the disability community kind of the same way. I don't know. That's like a idealistic it's idealistic, but you know, it, the truth is you're going to care about your cause, you know, more than other people will. Speaker 1 00:16:14 Yeah, that's so true. I think that it's the power of the internet these days and technology. And there's so much information out there. And I think on another podcast episode that I had with a friend who has a spinal cord injury and he commonly gets asked you, well, how do you Patty P and it's like, you can literally Google that question. That's a very personal question, uses a catheter, right? How do you use the catheter? I don't know, Google it. How do you, like you could watch YouTube videos and tutorials on probably how to do that kind of stuff. So with a lot of like sensitive topics in more like invasive personal questions, I think it's important to really educate yourself when someone tells you, you know, I have muscular dystrophy, I have written Ninas, pigmentosa, you know, what, what does that look like? But I do think there's value in hearing a personal story, right? Because you're not going to get the day in the life of someone with a disability. You're not really going to read that on it. You just don't, it's not the same when you Google it, right. You're not getting that human aspect of it. Speaker 3 00:17:31 The human story is like, just is the most important part of the story, but it's also at the same time, it's just like scratching the surface of what it is. And there's a lot in what I'm learning and what I didn't expect to realize and figure it out. And I've learned this through starting podcast is most of I'll say not most, I'll say half of living with a disability is, is a, is a mental game. You know, it's like, there's, there's like some deep psychology going on with how, how you, how you view yourself, how you think other people view you, um, what you think your limitations are, how you embrace limitations, you know how, you know, sometimes you, you, you feel sometimes you feel negative and you feel, you feel bad about feeling negative about it. You're like I should be positive. You know, I should always have this positive mentality and it's it. Speaker 3 00:18:38 To me, there's like a mentor, mental turmoil sometimes, and a lot of back and forth on how should I feel, what should I be open about and how common cause, you know, you feel like a little bit of an, not an outsider, but there's, you know, you have a, if you have a rare condition, you, you feel a little bit misunderstood. And it's a lot of back to my point is it's a lot of pressure to be the only source of education to the people around you on, on what you're going through. And my advice for anyone listening, if they feel like people around them don't understand, you know, your disability or just suggest, find articles, share, share content, you know, you know, share this podcast around, you know, this is the kind of, this is the reason why I started my podcast is because I wanted to be open about things. I wanted to have an open forum and it, it allowed myself to, in a sense, have a free therapy. And I get to get things off of my chest on, through, through interviews and yeah. Yeah. So we got a little off there, but, but Speaker 1 00:20:07 No, I think those are all really valid points. It's, it's easy to, and I've done so many interviews now on different podcasts and just news articles and stuff. And I don't want it to come across feeling like it's just a, a, merry-go-round like, I'm just saying the same thing over and over again. But I think there's a lot of value in just every, every opportunity that you get to share your story. That's a different net of a different group of people that are listening to it or reading it. And so you kind of have to remember that as well, that you're not always targeting the exact same group and you may end up being able to share your story with at least one new person that you didn't know before and who knows what that can do to them or for them. So, Speaker 3 00:21:05 Yeah. And it, and it's like, yeah, I agree. And you know how like comedians, they had that phrase, like know your audience. And sometimes you, you meet someone and you just feel like comfortable. And you're like, I don't have to explain anything to them. They they're they're cool or whatever. And then some people you feel like if you don't explain it, then they're not gonna like validate you in the sense, like they're not going to wrap their mind around and a different perspective or an alternative reality than what, than what they're used to. And you know, and sometimes you don't even want to talk about it sometimes. Like you said, you're just, you just want to be like Google. It depends on your mood for sure. Yeah. Yeah. Speaker 1 00:21:57 So I kind of want to know also about, you know, to someone just says Google it, but if, if they're meeting you for the first time, obviously it's, it's an invisible disability, invisible visual disability. And to the normal user, you're just a, you're just a dude that's wearing glasses. It looks very hipster looking glasses. Right. And so I like the clear frames. Those are cool. And yeah, so a lot of people don't realize that glasses usually can mean more than just you having some issues with the fuzziness on the letters. Like it's a whole, it could be a whole wide range of impairments. So talk to me a little bit about the difference in, um, or I guess how people treat you. Speaker 3 00:22:49 Yeah. And I, I think, you know, the hipster movement really has changed the, uh, glass, the glasses game, you know, glasses are cool, you know, people who don't even have a visual impairment or are aware of clear frames now. So now yeah. So now glasses are kind of just blending into, you know, an accessory, you know, I don't hate it either. I don't hate it either. I think school and, um, well, why can't Speaker 1 00:23:20 We normalize all disabilities like that, right. Speaker 3 00:23:23 Yeah, exactly. Yeah. And yeah, like how, how would you feel if, if like, if like a wheelchair became like a fashion accessory, would that upset you? Or would you like that? Speaker 1 00:23:38 Um, I think it, but it's hard to say. I think I would rather more so normalize and just not get the weird looks about it all the time. I think for me though, I have more of a futuristic looking chair, so I, I generally get fewer, um, like, Oh gosh, like here comes a weird chair type. It's more like, Whoa, that's the wig. It is looking wheelchair I've ever seen. So I think just the way, and also like your confidence that you bring with it also really changes how other people view you and I, Speaker 3 00:24:22 It's hard and you tell them about confidence, isn't it? Like sometimes you're not going to be confident, you know? And then isn't that frustrating because then you're like, and then you recognize that and you're like, damn it, people think that I'm not confident and they think I'm sad in this wheelchair. Or they think I'm sad with a white cane, you know, they Speaker 1 00:24:42 Well, that's their pity, you know, and they're projecting they're exactly. Yeah. They're projecting on how they view you on you, which is like, well, you may have a completely opposite viewpoint about that and that's not your place to change necessarily their mindset. They have to come to that and to their own conclusion. Speaker 3 00:25:09 Yeah, I know. And that's, that kind of goes back to my point is just like don't ex don't expect yourself to be the only education. If someone really wants to understand it, they're going to have to do their own research. But I, I, let me, let me go back. Cause I don't want to get too far off. I liked your question about the invisible, a visual disability, and it's a kind of, uh, it's kind of can kind of be comedic in a way sometimes because how, how, how do you, you know, say, I say, let's just say I'm at a coffee shop and I'm eating I'm with a friend of mine and that friend is familiar with me and he kinda knows what RP is and all that. But then let's say he invited a friend of his, that I had never met before. And the new friend shows up and they go for a handshake. And you know, since my peripheral vision is kind of wonky, a lot of times when people go to shake my hand, I just do not see their hand at all. And then they gave me this and then I can see their face look weird. And then I looked and I looked down and like, I had to like find their hand. Speaker 1 00:26:25 Do you make a joke at that point? Like to laugh it off? Or are you like generally embarrassed? Speaker 3 00:26:33 Sometimes I'm embarrassed. And sometimes I, you know, at this point to be honest with you and it's, it works, but it can be Speaker 2 00:26:44 Stressful. Sometimes if I know, if I know I'm meeting somebody for the first time, I have to like be proactive in the handshake. I have to be the shaker. You know, I have to reach my hand out because they're going to, they're going to come to my hand. I don't even have to move it on to search for their hand. So, but sometimes, you know, you can't always be on point and always be like cognitive about introductions and who who's going to show up where and some, and then, and then let's say you miss the handshake. And then, then the question is, is your first interaction with this new individual going to be, Hey, sorry, I didn't see your handshake. I have, I have a, I have a vision. And then they're like, what? And Speaker 1 00:27:34 I just met you. Like, it's just shaking your hand. Yeah, Speaker 2 00:27:37 Yeah, exactly. So then you feel like this weird conundrum you're like, well, I guess I just have to seem like, I don't know out of handshake. And now that person's first impression of me is that I didn't shake their hand. Well, yeah. Speaker 1 00:27:53 And that can be very off putting it really can. I'm not loving it. That, that it's actually, because the first impression is, is huge. But I guess on the flip side, there is a good thing about the pandemic where someone comes out to reach the shake my hand and I'm like, Oh, don't touch me. No touchy. It's been great. It's been, Oh, I'm all for it because it's actually starting to get more and more difficult for me to like, just like having an action of like picking up my arm and then extending it. And then shaking someone's hand it's, it's a process. It is it's starting to become more. Speaker 2 00:28:31 And then you don't want to like wear a sign or a shirt that like lists out ruled or like, here's how I want you to interact with me. Don't shake my hand. The exact, yeah. You know, so it's, it's a, it's a weird balance. You gotta strike. And yeah, I, I think at a very, just basic level misunderstanding of the disability community that people without disabilities don't think about is the energy people with disabilities put into hiding their disability. Even if they're out in the open, even if they're there, they're broadcasting their disability, they are still hiding it, whether they want to admit it or not. Because, you know, they're thinking of ways like you gotta be able to couple steps ahead, you know, if you're going to a social event, you're going to analyze the room. You know, I remember on your podcast, you, you said you, you look for key things of accessibility, like with a bathroom and yeah. Speaker 1 00:29:35 Table height, all that kind of stuff. Just like overall general, all the time. That's energy, you Speaker 3 00:29:42 Have to spend analyzing a room analyzing where you can and can't go. The other people just don't have, they don't have to use their, their mental energy on that. And, and sometimes I think it might be good. I think it makes us a little sharper. I think it, it makes us be a little bit more analytic of spaces and people and like kind of body like body language. And just kind of even, I want to say like interior design, like w like Speaker 1 00:30:16 We're just very detail oriented. I feel like just in general, especially for those who have trouble with the built environment, or just an environment in general, where it's not where it's outside of their control, especially those who are autistic. Like it's a whole nother ball game. Like a lot of, from my interviews interviewing autistic people. It's, it's just, you can't control anything. And it's very off-putting and you're having to think about everything and analyze everything. So, yeah. Detail orient is huge. Speaker 3 00:30:52 No, what I was just analyzing is, and I don't like to admit it. Well, I guess, I guess I don't mind admitting it, but I was just analyzing this because, you know, I'm, I, I just analyze myself who am I to be on this podcast, talking about RP. When I still have most of my central vision. There's people with RP who are younger than me who have lost more vision than me. And, and then there's like a comparable, you start, you even like compare the severity of your disability to other disabilities. And, and then sometimes you feel bad about feeling bad because you know, someone else has maybe, maybe they're, they're their conditions in more like, critical, like their health. I don't know. Maybe their, their conditions declining faster or has declined faster than yours. And that's weird. That's a weird thing. I think that no one thinks about either is like, you know, I had a guest on my five guests and she said something similar. Speaker 3 00:32:08 It was like, there's no such thing as like the suffering Olympics, like, Oh, I suffered more than you, you know? But in a weird way, I do think about that sometimes. Like, I feel weird that I, I have, I started a podcast about, you know, and talk to people with disabilities on it. And like, what makes me the voice of that? And I, you know, I don't claim to be the voice of it. And I'm only speaking for my particular situation. And maybe that's my insecurity of feeling like, I don't know, maybe, I don't know. I don't know where I was going with that, but I think that's just another thing that people with disabilities have to analyze is like comparing themselves to not only, um, other people, just like anyone, if you compare yourself with anyone and you also compare yourself within the disability community, I think, Speaker 1 00:33:01 I don't know if you've seen the movie Crip camp, but they talk about this disability hierarchy. And I think it was the polios were at the top of the hierarchy. Like they were the most disabled. And then the hierarchy is ranked based on different disabilities based on who is, like I said, more disabled Speaker 3 00:33:27 And like a comedy movie. Speaker 1 00:33:29 No it's Oh, it's incredible. It was a recent net Netflix movie that talked about the creation of the ADA and five Oh four and just the activists behind it. There was a group of a large group of individuals that helped to get that created and have that legislation passed. So talks about like true to human and a lot of other people, um, on that activism community back then, something that we don't learn in our textbooks in social studies in elementary school. So I highly recommend watching it, but yeah, Speaker 3 00:34:09 Definitely. Well, I'll check that out. It sounds great. But I think I was thinking you were a, you were pitching it like one of those movies, like what's that old movie with has been Stiller. He's like a camp counselor and it's like, uh, it's about like, it is, it's about like, uh, Speaker 1 00:34:31 I know you're big into video production Speaker 3 00:34:34 Kids trying to lose kids, trying to lose weight at a camp. And then Ben said, Oh Speaker 1 00:34:40 Yes, I have seen that like harsh Speaker 3 00:34:42 Counselor. That's what I thought you were. Speaker 1 00:34:45 Oh, no, no, no. Well, I was just kind of like adding, adding to your point that the disability higher our hierarchy is very true. And it's just how it, how people view different disabilities based on how, I don't want to say how crippling they are, but just how, like the lack of immobility or the lack of, I mean, visual and verbal and all of the different senses. Those are, you know, so it's yeah, but I, without a doubt would never say you are not qualified to speak about a disorder that you have because you have it, like it's in your genetics, whether your in the early phase of progression versus in the later phases of progression, that is the time of genetics and that's only what your body can define for. And also there's other influences like they environment and stress and you know, all these other external factors that contribute to any type of progressing disease. Speaker 1 00:36:04 So your story is your story. And I would never, I guess, looked down upon that own it. Um, what I would say, because I'm trying to cause like where I was, you know, when I was 14, I looked normal. I, I played competitive sports, but, and do you know, 10 years later, a very different story, right? I'm using a wheelchair full time. So dear, just in a different phase of where it is, and then it eventually is going to unravel the way it's going to unravel. And that can be scary though, especially with a progressive disability. I know all about that. Just you don't, the future is really, it's a knowing and it's scary. So I kind of want to hear more about how you're thinking about that. Having your mom have it kind of like seeing her progression and then do you compare it to yourself or try not to? Speaker 3 00:37:07 Well, I do compare it to myself, but I also, it's almost like a advantage to S to see how my mom, how my mom's vision has been affecting her, because I'm able to kind of predict it. You know, I feel like say I was the first person to, to have RP. I wouldn't really know what to expect. And I have used that knowledge to set myself, put myself in a different position. And, you know, my mom is, you know, I grew up in this small town in North Carolina called hope mills, North Carolina, and it's right outside of Fayetteville, North Carolina. And, you know, you, you live in Atlanta, you know, you have some public transit, but for the most part, you know, the South and for the most far, most of America is very car centric. And, you know, whenever I was growing up, my mom was still driving, but I remember we had, you know, going back to the night blindness, we would try to do stuff during the day. Speaker 3 00:38:29 And if it was starting to get dark, I could see my mom visibly get stressed out while driving, you know, and as a kid, you know, you think your parents are invincible and that, you know, my mom can see good enough. You wouldn't drive us home. And, uh, in dangerous. And I, and I'm not saying that my mom was irresponsible. Cause my mom in my, in my opinion can do no harm, but I was able to see that's just one example, like transportation. So I moved to New York city because I wanted to live somewhere where I didn't need a car. I was already getting to the point when I, before I moved to New York city, I was living in Raleigh, North Carolina, and I was still driving. I was, I drove, I was, I just recently got rid of my license and I wasn't told to get rid of my license. I, I did it. I made the choice to stop driving because driving was becoming very stressful when I was constantly worried. I was gonna run over someone. And, Speaker 1 00:39:39 Oh, that's great that you did, that. You took you, you saw your own safety and others, car drivers, pedestrians, their safety, and you made Speaker 3 00:39:51 Selfish. When I was still driving, I was like, why am I still driving? Like, this is like, Oh, this convenience of you being able to drive to work still is, is that worth one, the stress of, of driving and having that being on full alert while you're driving that really could wear you down. And then also like, what if, you know, what if I did have an accident or hit a car or somebody and you know, and that, you know, I, I look back on that now of DRA with my driving experience. And I look back in it, it's like stressful to even think about operating a car. And I I'm. So I'm so happy that nothing bad ever happened. So I, I basically quit while I was ahead and I, I decided not to drive anymore. So now I, you know, I can't drive drive anymore. Speaker 3 00:40:48 And most of America being very car driven, you know, being in New York city solves that problem. I guess another thing that, you know, maybe my mom, I feel, I, I'm not really sure where she is on her RP journey in terms of acceptance of it, mental acceptance of it. But, you know, I grew up in the age of the internet and, and also having a, you know, a parent with it. I almost feel like I have a built-in support system, you know, with my mom and my, my sister, by the way also has RP. And my, I have an older sister and an older brother and my brother does not have it because, uh, retinitis pigmentosa is it isn't, it is hereditary, but it it's it's, it varies. But for the most part, it's basically you have a 50% chance of passing on that gene. Speaker 3 00:41:59 So two out of the three kids, my parents had, you know, have RP and my sister's older than me, but my, my, uh, my vision is I believe is worse than hers. And so that's a little different and I've, and another, another weird thing too, is comparing when things started affecting my mom, versus when they affected me, I'm seeing symptoms way sooner than my mom was. So that can be, that's kind of alarming to me because, you know, my mom's, my mom is now in her, in her sixties and she could still see, but, you know, she's considered legally blind. She, she, she couldn't drive, you know, she can't drive anymore. And, you know, being in a car centric, part of the nation, she's relying very reliant on other people to get her around. And I grow, grew up seeing that. And I did not want that for myself. Speaker 3 00:43:12 I did not want to be reliant on having to ask people for a ride. And luckily I am I'm w I'm privileged enough to be able to make the move up to New York city and that I have, uh, a career that is just, just is sustainable here. But yeah, I don't know. I just, I just really, really, really, really am trying my best to, you know, use my mom as a, like a, as a guide, you know, the pros and the cons, you know, my mom does have a good spirit about things and things like that, but, you know, in terms of lifestyle, you know, I just think I wanted a little bit different of a lifestyle and yeah, I could, I could probably go on and on about that. Speaker 1 00:44:10 That was really great. I like how you were talking about just, well, let's just overall and you do compare yourself to your mom, but you also see your yourself progressing more quickly. Or I will rephrase that as if she was say 20 and had X vision. You had that level when you were younger, like when you're 18, that's just like a general comparison. So I have seen it and it's true. And in my type of MD that has it passes on from generation to generation, the symptoms get more severe. And so you're seeing those milestones much earlier. Speaker 3 00:44:57 Yeah. I, you know, I didn't know that fact. That's very interesting. Speaker 1 00:45:01 So yeah, I don't, I have no idea if it's true for our peer or not, but you did mention that you were in New York city and that you take transit, and I kind of want to talk a little bit about transportation and how they have designated seats for passengers who have disabilities and the senior citizens. And it's, you're, you're supposed to offer those seats to people disabilities. Do you? That's funny. No one does no one. Yeah, I know. Right. And I'm wondering if, if you've ever sat in one of those, and if you've ever gone weird looks or stares because of it, or you just, you don't even try to do that. Speaker 3 00:45:49 I I'll be honest with you. I think the co the subway culture here is kind of every everyone for themselves, and there is an occasional, and I think it's mainly when, like, subway cards are really full. Like if they're like packed where, you know, all seats are taken, and then you can only be on the card, if you're standing and to get support, you have to put your hand on the ceiling of the subway car. Then I have given up my seat for, in those situations. And if I see, you know, someone who I feel like needs my seat, I will, I will get up then. But in terms of like designated seating area, I don't think anyone really thinks about that. You know, and people will, I see it all the time where people will even claim that whole space for themselves. They'll put their book bag on one side, one bench, and then on the other side, they'll sit with their feet on the other seat Speaker 1 00:47:00 And then Atlanta VA, Speaker 3 00:47:03 And then they ride, you know, probably, you know, 20 different stops like that, you know, just, you know, while they sleep or whatever. And, you know, I, I didn't, to be honest with you, they, they probably don't even know that that's what the seats are for. Speaker 1 00:47:19 Probably not, because they're either not well labeled. They're not enforced. It's just probably they're not enforced at all. And so that's one, and it's like, who you, you know, when you're enforcing that, who's going to say you have a disability or not like, and then you get into issues with stomach racism and stuff like that, and police brutality. And it was just, don't want to add that into the mix on top of that. So you just, you don't Speaker 2 00:47:46 Even talking to me, you know, we're in a pandemic right now and, you know, it's literally illegal to not wear a mask on the subway yet. Speaker 1 00:48:00 People resist it all the time Speaker 2 00:48:03 Now wearing masks. You know, people think that people are across the, you know, it's like, you know, people in like the Midwest or the South, or the ones that are like being opposite and about mask, you know, I see that here in New York city, all the time, people even wearing masks on the train, but you know, it's not even on their face, it's on their chin. And I'm like, what's the point of even having it. Speaker 1 00:48:25 Yeah. That's a whole nother Speaker 2 00:48:27 You're on the subway with a mask, but you're not wearing it. And now everyone else feels uncomfortable because of you. Speaker 1 00:48:34 Yeah, Speaker 2 00:48:36 Yeah, yeah. But yeah, in back to enforcing it, you know, that's, we're in the middle of a pandemic where New York city was hit very hard and everyone is fully aware of the earliest. I hope they are at this point, unless you're living under a rock, you know, of the dangers of COVID and people are still not wearing mass. So if people can't wear a mask, then people, I just are not going to be considerate to, uh, assign seating. You know what I mean? That's kind of, I have a negative view on that, but that's just how I see it, unless you make it, like, actually, like you said, enforceable, where you get a fine, you know, and that's the whole point of making the match thing, you know, a law, but it's still not, not really working. Speaker 1 00:49:35 No. And then I also kind of want to know more about what kinds of accommodations that you would ask an employer for when you're working with RP. And then why do you really envision for how others can be supportive for you? If it's, you know, if movie theater com movie theater companies were doing better to provide assistance, walking, helping, you know, lend a, helping hand to walk into a movie theater and that's like a very specific situation. Right. But what are some scenarios that companies and people can help you, Speaker 2 00:50:19 You know, when it comes to employment? You know, I hate confused sometimes when, you know, when you apply for a job, it had, it had, you had the, like, the last thing you have to fill out is, you know, do you have a disability? And sometimes, sometimes I click. Yes. And sometimes I click, no. And I wonder why that is. Yeah. I don't know, because part of me is like I work in a very visual industry, you know, I'm a freelance video editor. And part of me is like, you know, I used to do more than video editing. I used to shoot a lot of video and I would, you know, work for these small advertising agencies in North Carolina where I would be the in-house videographer and photographer. And, you know, I was a one man band. I was doing the lighting two cameras and the audio and yeah. Speaker 2 00:51:23 And definitely getting severely underpaid for it too. I just want to throw that in there. But the, the, my, my point is I basically quit all of that because it was, I was faking it for too long. I would, I, I was on these PR sets and some of them are hard to, to navigate through because, you know, there's a lot of light stands and tripods and equipment. That's very expensive. And so you want to move slow. You don't want to knock anything over, but at the same time, you want to be efficient and you want to, like, you have a lot to do. And that same stress of like driving, you know, and w and worrying about an accident kind of started creeping into other aspects. It was like knocking over, uh, you know, a $10,000 light, or like, you know, a camera that you rented from another company that is, you know, couple thousand dollars, maybe the whole camera package. Speaker 1 00:52:40 Right. And it's like, if you were to accidentally bump into it, I mean, if you haven't disclosed your disability, is that when you then disclose it, you know, it's like you apologized. And you're like, wow, I didn't even see it. Or I apologize. And I have this. Speaker 2 00:52:58 And so, and it's my own fault, you know, I, I will admit to that because I didn't disclose my, I didn't disclose having RP to any of my employers until I was 28 years old. I straight up pretended and it's late. I know. And I, I would say for about five years, I was, I at some points I'm like, I don't know how much longer I can pretend this. And I got tired of pretending that, you know, Oh, I didn't see that case that the equipment goes in and I tripped over it. I just didn't see it, like, in reality was I, you know, I guess I didn't see it, but I, you know, for a different reason, you know, and people wouldn't, and since they didn't know I had RP, they didn't really know to cut me a break. I guess, in that regard, I felt like if they did know, you know, they, might've been a little bit more patient with a workflow and things like that. But my fear was, I am the videographer for this, for this company. Speaker 2 00:54:18 And it's wrong in my, in my going to be viewed as less of a less valuable videographer in my, the prime employee, prime candidate for this videography role that I I've been hired onto if I have a vision disability. And for the longest time, I just, I just would pretend, you know, I there, and you get really good at pretending, you know, you, you, you, you, you learn the layout of your office and you know exactly where things are. And, you know, you know, if there's a company meeting, you're the, you just, you, you want to go get your seat first, you know, and you want to say, Speaker 1 00:55:10 Yeah, you start, you start making excuses for yourself and start compensating. And like, I would, I couldn't in high school, it got too difficult to carry textbooks from class to class. So I would hide them in the library. There was a central location in between classes. And so I would, I would normalize that and be like, Oh, that's okay. I walked through the library and people would ask me, you know, why do you always walk through the library? And I'm like, I dunno. I just like looking at books. Yeah. Speaker 2 00:55:42 You, you figured out you get real creative with how you, how you figure it out. Like, you know, you asked about movie theaters. There was one time where I put that, you know, how there's lights that line, the Isles of movie theaters, or some of them, they like kind of they're on the ground. And they're like a little sh led strips. So what I did, I always just, I always sit on the outside. I'm never center because if I have to get up, there's no, it's literally impossible for, it would be impossible for me to find my seat again, without like turning my phone's flashlight on and just like upsetting a lot of people in the theater. Speaker 3 00:56:24 So I always sit on the outside and sometimes, like, I figured this trick out, you know, I, I can put, if I have popcorn, I can put it over the light. So whenever I, I leave and I come back into the theater, I just keep my eyes on that, that led light that I can see. And then whenever there's just like this breach and the light that's being obstructed by, you know, my bag of popcorn, I know that's where my seat is. Speaker 1 00:56:55 I love hearing this because cinch just makes so much truth to me just growing up and just all of these, like wacky things that I always do to be able to just get by. Yeah, you got to see what you got to do. And it's, it may look really weird to some people by like, if that's the way that's gonna get you back to your seat in the middle of the movie theater, because you physically can't see that's, if you're just Philly, like, yeah, Speaker 3 00:57:27 You just get so creative, you get so creative. And I was able to hide it for a while, but I, I was like, I was starting to get to the point to where it was just draining my energy to hide it. And I got tired of it. And then I told my employer, I actually told my employer because I was moving to New York at the time. And I, I quit my job to move there. And that was kind of how I explained my reasoning, you know, and then I kind of told myself from done on out. I'm not going to shy away from, from letting that be known. And, you know, working as a freelancer, I still kind of run into this because I bounce around, like I don't have a full-time job. So I, you know, before the pandemic, I would be in, you know, one office this week, a different office, the next, sometimes I'm working from home and you're meeting all these new people and, you know, you know, going back to my original handshake reference, you know, do you want your first interaction to be explaining something to them about, you know, your vision? Speaker 3 00:58:46 So I always try to wait for just like this natural window to bring it up. You know, I don't want it to just seem like, Hey, my name's Lance and I have RP and you know, this is what RP is and listen. And like, you know, that kind of thing. So, but sometimes, you know, that natural window never happens. And that's why I use, you know, helpful tool is social media because, you know, everyone follows everyone. Yeah. So if you're, if you're about it on, Speaker 2 00:59:22 You know, in your, with your online presence, my theory is that you, you, you, the more open you are in line to more people are gonna understand it. So I've, Speaker 1 00:59:33 That is actually a really great Avenue for people to disclose their invisible disability, because nowadays we all want to be so can, I mean, I wouldn't say everyone, but a lot of us want to be so connected with each other and follow each other and share each other's information and stuff like that. And it's easy. You pull up your Instagram and boom, right there has, it has a podcast see-through podcast. What the heck is that sees a whole bunch of disabilities on their, why? Like you start getting curious. Speaker 2 01:00:07 Yeah. And I think, you know, maybe like subconsciously, maybe that's why I started it. Maybe that's one of the reasons was, you know, I was looking for a way to broadcast to the world that I have RP, maybe that was just like some subconscious way of doing it. It's definitely helpful. And I find that the more and more I talk about it and the more and more open I am about it, the better I feel about it. And, and I, I can't like if I have one goal for anything I do now, when it comes to my podcast, or like even coming on your podcast is just being an advocate for talking about your disability and being open about it. And the, you know, the good and the bad of it. You know, just, just being open, I think is just such like a game changer. If someone out there is kind of coming up with weird ways to get to their seat in the movie theater, I think it'd be a lot easier if you just told people. Speaker 1 01:01:14 Yeah. Well, it would be helpful if we were more proactive in the, especially in the built environment for you specifically and myself, right. If, if companies and businesses and developers were more proactive in a universal design, we wouldn't always have to walk around with this invisible sign that is larking to be shown to whoever that we're meeting for the first time. So, and then you have to go and find out through social media. So yeah, it's, uh, yeah, I just, I would always urge anyone and especially who has, who manages aspects of the built environment look, and then for your specific situation, you know, what is that experience like going from light to dark and Speaker 2 01:02:09 Yeah, yeah, exactly. And, you know, like I said, um, as a freelancer, I'm in these different offices and I bounce around and I, my central vision, Speaker 3 01:02:21 So a video editing is really not a problem for me, you know, which is why I kind of, I just kind of simplified my career to video editing. You know, I also felt like video editing was my strongest skill too. So it felt natural, but the, this is an example. I change my cursor size to be larger because it's, sometimes it's very, very easy, especially using multiple monitors for me to lose my cursor. And, you know, an Apple has that really handy feature, wherever you shake your mouse, you know, the cursor gets bigger and Speaker 1 01:03:01 I use that feature cause I like Speaker 3 01:03:03 It too. Yeah. It's a lifesaver. And so I made my cursor size big and in sometimes, you know, at the, um, I'm in these offices and people will kind of, producers will sit over my shoulder and they'll, you know, we'll go over some notes to the video together and make changes and not, I, you know, I've, I've had multiple people comment on, do you really have you really make your cursor that big, you know, like, because they Speaker 1 01:03:31 It's such a passive aggressive statement though. Speaker 3 01:03:34 Yeah. And, and they don't know I have RP cause some, you know, like I said, sometimes that natural window doesn't come out and you know, I don't, I don't like to just make things awkward and just tell everyone, but you know, and then I, maybe I'm too nice, but I could use it as an opportunity to be like, yeah, I do, because I have, you know, RP and a vision disability. And like, I can't see if I don't make it that big. And then I could just, you know, but you know, what's that gonna do to the energy in the room? So what is it, my responsibility, you know, maybe they, they could use that learning. They could use that, learning that learning lesson. So maybe from here on out, I'll just like, make everyone uncomfortable, just so they, so they learn, learn their lesson, you know, I don't know. Speaker 1 01:04:23 Yeah. I kind of can't go to raise, they can, it can trigger. People want to be more empathetic or they can then turn into, ah, I feel so much pity for you. Yeah. You know, so it's it's you never know how someone's going to react. Yeah. That's definitely worse. Right. Because then it's, it's, it's the whole production. Yeah. Speaker 3 01:04:45 And that's another thing too, when you, when you, you talk about it, you feel like people, some, some people are just in there wrong, you know, some people think that you talk about it because you want attention for it and you want the pity for it. But it really is just a functionality thing. It's like, I, I have this thing I operate differently. It would be more efficient if you knew how I operated. So therefore there's none of this back and forth and weird questions. My cursor size, you just, we just go over the notes and things happen naturally. Right. You know, it saves time and, and, and it's just more effective. Speaker 1 01:05:28 So I was in a, um, like a manager coaching training today. And we, our topic today was about microaggressions in the workplace. And so I think that would be a very micro graph. That would be an example of a microaggression, like a very passive, aggressive statement. Like, why, well, why do you need your cursor so big? Like, do you really use it like that? You know, it's like a put down statement and the instructor came back with a phrase that said, you know, I can, I can see that your intention was probably genuine, but the impact of that was, uh, can be negative. And so, yeah. So I, I do prefer to use my cursor size that big. It just makes it easier for me to, to manage where I'm at, keeps me on focus, looking at these big monitors all day long. Yeah. That's kind of an easy way to, to flip the conversation around. Speaker 3 01:06:28 Yeah. And you know what, and you probably have learned this too, since you I've learned to. I, if I noticed something like that, I just, for some something in my head just says, figure it out yourself. Don't ask them, you know, like, like, Oh, I, you noticed that their cursor's big try to like, investigate it yourself to like, figure out why their cursors, their cursors big, you know, Speaker 1 01:06:55 Or maybe just your preference Speaker 3 01:06:58 Or just assume it's a preference. Or you're like, Oh, you know, when you see someone who's really talented at their job and they obviously know like, say computer software in and out, and you just see them like working and being, they're very efficient at their job. You don't question their methods. You're not like, why did you right. Click there instead of go up, dude. Speaker 1 01:07:19 Exactly. Speaker 3 01:07:22 You don't, you know, I don't know. It's just like, Speaker 1 01:07:27 Yeah. I think you could also flip it around and be like, well, why don't you have your cursor this big get off my level. Speaker 3 01:07:38 I think the small cursor's weird. Anyways. I see people and people, people change their speed of their cursor too. You know, they make it real fast and they make their cursor small. Speaker 1 01:07:49 Like, do Speaker 3 01:07:51 They think they think that it's going to make their, they're going to be faster at their job because they can move their mouse faster? Speaker 1 01:07:58 Uh, yeah, I guess it makes sense. Just playing the devil's advocate. Speaker 3 01:08:07 Yeah. I would love to see data on cursor speed and productivity. You know Speaker 1 01:08:13 What I will say, productivity, you can be extremely productive using your keyboard far quicker than you can moving your mouse around. Speaker 2 01:08:22 And a lot of video editing is keyboard shortcuts. So there you go. Speaker 1 01:08:28 Yeah. And that just brings a whole nother Kravec. I know we're getting at time, but, uh, a whole nother topic of like web accessibility and just keyboard shortcuts. If, if there, if I'm on an application I immediately learn and keyboard shortcuts immediately because those are life saving and they save so much time. So I think in general, maybe this is me just projecting onto you, but as you continue to progress in your disease, you'll start probably needing to use more keyboard shortcuts because he'll be using a screen reader. Right. Cause usually those people who are blind use screen readers, UAV 10 times more efficient at your job than those using a mouse all day long. Speaker 2 01:09:18 Yeah. I agree. And Speaker 1 01:09:23 <inaudible>, Speaker 2 01:09:25 I know you're not wrong. And part of why I, another reason why I started the podcast too, is because it is just audio based. And I feel like there is some longevity there in terms of, uh, you know, creating content or whatever. Cause, you know, I, I like to make things and from movies to music to podcasts is just, I've always just had fun creating things and you know, you know, going back way back to earlier talking about, you know, how do I, you know, analyze my mom's situation, you know, I can kind of see the future and kind of start to plan for it now. And, and you know, almost like build a little like nest for myself and I can, you know, I can, I can be proactive and I can learn, you know, I haven't yet, but I plan to learn how to use a, a white cane and certain technologies and apps and things just to kind of get used to it. And, and to be honest with you, like being proactive is great, but every single day, you know, I'm learning, I'm adapting, you know, you know, we, everyone disability are not as adapting every day to their situation and surroundings. And I'm just trying to be a little bit more proactive, I guess, with how I structure and set up things. Speaker 1 01:10:58 Hmm. Wow. I think I'll leave it at that. That's so eloquently said to wrap it up, we are, we are adopting, at least I am every day you are every day. It's very creative. I think that's what me says all is our super powers. We are out of the box thinkers and always thinking, analyzing very detail oriented far more than the average person. So thank you so much, Lance, for taking the time to just share your story and being vulnerable and talking about kind of a little bit about what you would envision for what the world looks like to make it more accessible. Speaker 3 01:11:42 Yeah. Thanks carton. And you know, this was my first interview and I'd say it was, it was fun. I kind of, maybe I should just stick to this side of things. Maybe now I don't have to edit it afterwards. Speaker 1 01:11:57 Yeah. That's a great, that's the best part. Right. All right. Speaker 3 01:12:03 Yeah. You're a great host in a to really appreciate you having me on. Speaker 1 01:12:08 Thank you. All right. Bye. Speaker 3 01:12:11 All right, bye. Speaker 4 01:12:14 Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.

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