Isaac: Stickler syndrome, College accommodations, Low vision inclusive design

Episode 9 April 27, 2020 00:42:11
Isaac: Stickler syndrome, College accommodations, Low vision inclusive design
Freewheelin with Carden
Isaac: Stickler syndrome, College accommodations, Low vision inclusive design

Show Notes

In this disability 'coming out' story, Isaac Tibbets, senior at Kennesaw State University shares his story living with Wagner's Stickler syndrome which is a group of hereditary connective tissue disorders characterized by distinctive facial features, eye abnormalities, hearing loss, and joint problems. He describes what an ideal world looks like for someone who has vision loss/ visual sensitivites and how the university has provided accomodations in order for him to thrive. From thinking about closed captioning, high contrast colors, gradual changes in light, going to the movies, glare on menus, LED blilboards, driving at will get just a glimpse looking thru his lens. Follow Isaac on Instagram @just_the_tib 

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Episode Transcript

Speaker 0 00:00 Well you had asked about, you know, bullies and I haven't had a lot of bullies. I think. I think more so it's, it's people that, you know, kind of use humor as a defense mechanism when they're uncomfortable with the situation, you know? And so I think that's kind of the, I don't think I've had anyone bully me, bully me. Speaker 1 00:17 Yeah. I would say I haven't really had any bullies either. It's just kind of, I think it's more just terminology of how people not knowing how to approach this. Yeah. Or just like how do I interact with you on like, just like any other person just don't like sit on me. I don't know why people think like, Oh yeah, you could just like lean on my wheelchair. Just like hanging out. You said as an armrest. I'm like, no, I mean if like you're my family, we're sitting together. Sure, that's fine. But I don't know you like, no, Speaker 0 00:48 I kind of have that issue where people like as soon as they hear that I have a vision problem, the first thing they feel like they need to do is tell me what's wrong with their eyes. You know, like they have to tell me how blind they are from a certain distance or that they have to work. Speaker 1 01:00 Yeah. I think it's just people try to find that common ground in some way to carry on the conversation and anytime someone asks me like, Oh, why are you in a wheelchair? They always are like, well, my brother's sister's dog's cousin, you know, has a physical disability. And I'm like, well they keep saying thanks for sharing. You know, I appreciate you sharing that vulnerability with me. Just talk to me like, I don't know if HERSA Speaker 2 01:28 welcome to free the part of milk. I'm your host. Pardon my cough. Global disability advocate and a wheelchair warrior. This podcast share stories of people with various disabilities and shines new light on accessibility topics. Our goal is to knock down barriers so we can roll through life a little easier and build a community to do this together. I encourage you to rate of you. Subscribe, follow this podcast and text me at four seven five eight eight one two one five with comments and suggestions. We welcome you on our journey towards equality for all. Speaker 1 02:00 I have Isaac in the house. Hey, great to be here. I'm excited. Yeah, here in college. Go to Kennesaw. And what, what year are you in right now? I'm a senior right now, a public relations major. I've got just a couple classes left in the summer and then I'm out of here, which is exciting. Not so exciting. What's your ideal job? Speaker 0 02:22 So my ideal job is I'd love to do like, um, you know, the Atlanta international auto show was here just a about a couple of weeks ago and they've got people from all the different car dealerships or car manufacturers explaining the new cars and, and letting the potential customers, you know, figure out the cars and, and scheduling test drives and appointments and stuff like that. And that's something that really interests me. I've been a have been a car nut ever since I was 13. And so that's, that seems like the ideal job for me is just getting to talk to new people and show them around cars and vehicles. Speaker 1 02:51 Cool. And I think in the elevator you told me you wanted to eventually work for Porsche Porsche's. An ideal company. Yeah. Nice. Well anyone has any hookups with Porsche? Let's get Isaac a job or an internship or something. Awesome. Tell me about you all your vulnerabilities. I want to hear everything. Speaker 0 03:10 Um, so I have something called Wagner stickler syndrome. It's a genetic syndrome. Um, it can affect your vision, your hearing, your joint, some bone development, some facial growth, just a whole, a whole slew of things. For me. It's mostly impacted my vision. Um, but I do have some joint issues like with my knees and I'm double jointed so I can kind of get a couple of different things in your party trick. Yes, yes, of course. It's a genetic disease and they couldn't diagnose me at first because it wasn't, you know, there was no familial history with it. Um, and then finally after a couple of surgeries, they decided to diagnose me with a stickler syndrome. And when they did, they actually diagnosed my mom at the same time so that it would be, you know, genetic, they could relate it to someone else. So it is genetic? It is, yes. Speaker 1 04:00 What was that like for you when you first kind of, did you notice symptoms when you're at a young age? Speaker 0 04:07 You know, since I was four, I've worn glasses. So what stickler syndrome does is it causes a traumatic retinal detachments and so your retina can detach without any, you know, trauma or blunt force or anything like that. It just kind of happens when it happens at such a young age. It's very hard to notice because, you know, young minds and young ages adapt to stuff like that when I don't know what's going on. So we actually found out that was an issue. Um, I don't remember which Superbowl it was, but I was nine years old and they had a, um, Sobe the, you know, the drink company had a three D commercial and there was a lot of hype in grocery stores to buy the three D glasses with the products and, and see the commercial in 3d. So when I, I did that and we went home and I put on a three D glasses and I was watching the commercial, I was like, this is a bust. Speaker 0 04:49 Like this doesn't work, this, you know, this, this three D doesn't work. And so my mom was, you know, flipping the lenses, the blue and red lenses, trying to make things work and we just couldn't, for some reason I just couldn't see it in three D I had an eye appointment, just a routine checkup a couple of weeks later. So we waited until then and when we went and talked to my doctor about that, he looked at my eyes and said, yeah, your retinas detached, you're going to need emergency surgery. And so that just, we just kind of jumped right into it from there. Speaker 1 05:15 And how old were you at that time? You were nine. Okay. I mean, were you at an age where you kind of understood those emotions and what were going on? What was that like for you? Speaker 0 05:25 I mean, it was, it was, you know, something new I'd never even thought would happen. It really did. It just caught me off guard and I, I don't know, I think it took me a long time to kind of process what was happening. And you know, I didn't really realize it was this series until I was, you know, about to get put under for my first surgery. And back when I was nine, it was actually my left eye. The retina in my left eye had detached. And so I had three surgeries when I was nine. One to reattach the retina, another one to solve a cataract that had come up from the first surgery. And then a third one to remove an oil that they had put in my eye from the first surgery as before I turned 15 before I went to go get my learner's license. Speaker 0 06:00 Uh, the retina and my ride, I detached. And it caused a lot more issues this time around for, um, but I actually ended up having 11 surgeries over the course of seven or eight months. And so up until I was 15, my left eye was actually the one that we considered in my bad eye. And it wasn't Lynn's correctable, you know, it was just, I think it was 2,400 was the, uh, was, was the vision that I had in that eye. But when I turned 15 and all the problems I had started happening with my ride, I, um, my left eye over the course of the six or seven months I was having surgeries began to correct itself and heal itself. So now my right eye is the one with poor vision in my left eye is the one that's actually Linz corrected the 20, 40 now, which means I can drive. Speaker 1 06:40 Well, that's great. That's, I mean, especially as you're still, I mean, you're a young adult and you still want to be able to do those things, get a driver's license. And is it when you have the surgery, I mean, have you had any surgeries when you've been in college or Speaker 0 06:55 no, I've been, I've been lucky enough to not have any more real issues or real, you know, malfunctions with my vision since then. It's just kind of plateaued for now. But when I was in high school it was pretty difficult. You know, I had to miss a lot of school when I was nine I was at a Christian school and when I had to be out for classes, I mean the whole school rallied around me. They had the fundraisers, bake, sales, everything. I mean the parents were generous. I had a family give me an intended DS for me to be able to play on while I was in recovery. You know, another family gave me a one of the little iPod shuffles, the tiny ones from back in the day. I know it was fantastic. Yeah. Speaker 1 07:34 And so it sounded like people knew what was going on, but do you think they really understood or how, how would you describe it to someone or rallying for Isaac? Speaker 0 07:44 It's a difficult question because there is, there's a lot of questions when someone figures out that you have a, you know, an impairment or a disability, people don't really know how to handle it. They just know they want to help. And I think that's what they did for the most part. They, um, they might not have known how to help accommodate with my, you know, vision per se. Like an intended ODSP might not have been the best option for someone who was about to, you know, not be able to look at screens for a little bit. But, um, they also did a lot as far as, you know, helping financially. Everyone pitched in the bake sales order to raise money to help pay for the hospital bills. People gave Longhorns gift cards, all kinds of different gift cards to restaurants to, you know. Yeah, absolutely. Speaker 1 08:21 Good. They're feeding you well. Is it, speaking about some of those accommodations in school, what have you had to rely on or what has you found has been really helpful for you? Speaker 0 08:33 Um, well when I was in high school and my issue started happening, I got on something called hospital homebound and it's where the school works with you to make sure that you have all the work that you're supposed to be doing and, and you have the accommodations, you need to work on it from home and you can ask questions if you have questions and that kind of thing. I missed half of my freshman year of high school because I was at home. Um, one of my surgeries, I had a, a bubble in my eye where I had to lay on the right side of my face to keep the bubble pinned against one corner of my eye for six months. And so it was kinda hard to do homework and socialize and study when I can't, you know, even turn my head, I have to keep it sideways on a pillow for six months. Speaker 1 09:12 What's the impact of like with the bubble burst or how would that Speaker 0 09:17 the bubble was putting pressure on my retina actually. So it was just, it was putting pressure on it, giving it time to heal before the bubble. Like eventually dissolved and then went away. Speaker 1 09:26 Oh. So it was something put in place to help with recovery. Got it. Okay. And that was surgically placed, I assume. Do you have any other comments about just the surgery is and what it's been like for you mentally, physically, spiritually, all of the above? Speaker 0 09:43 It was really hard to process. I, I, I can honestly say once my, my problems with my ride, I started having, no, I had 11 surgeries. When you're that young, it's, it's hard to process and understand everything that's happening. So for me, I really, I just tuned out for most of it, I just kind of shut down for a little bit there and, and like I had to call my mother before I, you know, came and spoke with you cause I didn't remember what all the surgeries I'd had were. I couldn't, I couldn't remember how it happened or what went down. It just kind of, it's all just a bit of a mental block now dealing with it now, it's, it's definitely gotten a lot easier. I've gotten more accustomed to it. It's not as difficult to, um, work through. Speaker 1 10:16 Obviously you have more of a, I guess an invisible disability as I would classify it. Man. You look like a normal dude. Um, um, who wears glasses, right? So what would you say to someone or what are some of those misconceptions that you faced? Having an invisible disability? Speaker 0 10:36 Of course, you know, sometimes it's invisible and sometimes my eye reacts, uh, to meet, whether I'm reading a book or looking at my phone for too long, staring at a screen, it'll get red, it'll get congested, a look, you know, it'll look a little rough. And, um, I think the most common question I get when that happens is everyone wants to come up to me and ask me if I'm high. You know, so many people stop me and they're like, are you, are you high right now? Like, I'm in class? No, I'm not. You know, that's, that's, that's just a little problem that I have. And that's a big fear of mine as well as, you know, if I get pulled over while I'm going home, I don't want to have to put up with the hassle that, that could potentially STEM from, you know, an officer thinking I was under the influence and me having to go through and try and explain it. That's not the case cause I do, you know, other than that, I look normal and so, so it's hard for people to, you know, kind of buy into what's going on. Speaker 1 11:23 Do you have a medical ID card or something? I've seen some of those people have them. Speaker 0 11:28 I do. I have, well, I have a handicap placard that was given because of my depth of field. Um, and it's, I got it actually because I was going to get a parking pass from KSU and they told me that all the parking where I needed it was empty. And I, I can't, I don't want to park in parking decks because, uh, with my vision going from drastic, a dark light to bright light, it really hurts and it causes a lot of problems and temporary. I didn't want to be parking in parking decks and having to pull out from them and then worry about, you know, losing, you know, losing some, some vision temporarily. So I, you know, I asked what I could do as far as getting parking, maybe not in a deck on campus or you know, in a teacher's lot, somewhere like that. Speaker 0 12:10 And they said there was nothing they could do for me if I wanted that I just need to go get a handicap placard. And so I did. And I mean, it's been tremendous. Um, it does cause some, some issues sometimes, you know, like you said, I don't look like I'm, you know, impaired in any way. So a lot of people will give me nasty looks or make comments when I'm getting out of my car to a handicap spot. Um, I had a gentleman at Costco threatened to quote unquote put me in my place. Um, and when I didn't seem to phase by it, cause you can't get phase, you can't let stuff like that get to you. Uh, he told me he was going to call the cops, you know, have them come out and deal with me. Wow. Yeah, Speaker 1 12:45 that's insane. And I mean, I faced a little bit of that. So I got my handicap placard when I was still walking in high school and at the time I was 16 years old and I had a little bit of a gate. And walking was a little bit of a challenge, but I looked pretty normal and I faced the exact same thing of people coming up to me and being like, you're not in a wheelchair. And it's like, just because you're not in a wheelchair doesn't mean that you don't have the right to handicap parking. So I actually do want to talk more about, um, the parking deck in the darkness to light. That's very interesting. I'm really curious to know more about those sensitivities that you face and what are some things that people can be aware of when they're planning events or when they're planning designing architecture or, I mean whatever it is. What is your ideal world look like? Speaker 0 13:43 Natural light would be, it would be the ideal world just because it today, all the style is bright white lights. And so coming out of a dark parking deck into a building that's nothing but bright white lights shining on it, it is very, you know, difficult for me to get, uh, adjusted. Um, there's some issues with the rods and cones in my eyes, so, so light and dark kind of do give me issues, but as far as, you know, event planning and stuff, it's just, just have sensitivity to the fact that people have those, you know, needs and maybe just use a little more mellow tone of light. You know, it's not, it's not something too crazy. Speaker 1 14:16 What about, I mean, I'm thinking of things like movie theaters and, you know, things that go from really dark to really light Speaker 0 14:21 with, with movie theaters. I actually, um, normally I have to hold on to someone's arm and have them kind of lead me to the seat rather than, I can't just go in a movie theater and find my seat at once. I walk into the theater itself. It's, I mean, it lights off. I can't see. Speaker 1 14:36 Do you normally ask a theater attendant or do you ask just a person walking in and Speaker 0 14:41 normally if I'm going to the movies, it's with a friend and they already know about the issue. So they're, you know, a little bit of accommodating. It is, it is always an awkward conversation having to say, Hey, when we go in, just so you know, I'm going to hold on to you and I'm going to have you like lead us to the seats. Speaker 1 14:55 Yeah. If you're with your friends, obviously, hopefully they're understanding for that. So no, this is actually really fascinating to learn more about. I'm just thinking, you know, how can we get movie theaters and other, I mean, even parking decks, how can we make these easier for everyone? Speaker 0 15:15 Yeah, I mean adequate lighting is definitely important. Um, I think that's something that people have concerns with. And parking decks even without disabilities, you know, keeping a consistent lighting throughout would make it much easier for people to navigate even without a disability. But especially more so for, for someone. Speaker 1 15:31 We're just in my house right now and it's all natural light pretty much. What'd you say? This would be like your ideal housing situation as well? Where, I mean, I don't have any lights on. It's just a floor to ceiling window. Speaker 0 15:46 No, exactly. And I mean that's, it makes it really easy. You know, there's not a lot of contrast and then that causes issues. So having, you know, minimal contrast and natural lighting really does make a big difference. Speaker 1 15:56 Contrast in terms of lighting, not necessarily color. Yeah, Speaker 0 16:00 no, I'm a color is a whole thing in and of itself. When I was younger in high school, I had to have golden rod papers. All of my assignments had to be put on, on golden paper and send a white because the white would actually reflect too much glare from the, the ceiling light. Speaker 1 16:14 Yes. I did notice that in elementary school. I would say I'm much more aware of those sensitivities nowadays. Just going from dark to bright light. It's, I mean in arts my eyes and I have pretty fine vision. Speaker 0 16:30 Well, so it was funny. There was, um, it was when I was nine and I was out of classes and my mom was trying to help me with homework. We would have to take constant breaks because my eyes would start hurting. I would, you know, I would start being in pain from, from some of my surgeries cause my eyes were very sensitive. Even if the lack of vision, it was the, they're sensitive just because they've been through so much trauma and they, you know, they've been under three surgeries within three months. And so we would have to take breaks on my homework because my eyes would get so sore and then I would go and I would sit down and I would hop on that Nintendo DS that they gave me. And I would sit there and I would play it and I, I would, I would be fine. Speaker 0 17:04 And my mom always thought that I was just, you know, I was full of it. She thought I wasn't, I wasn't actually serious when I said my eyes hurt from, from doing the homework. But the interesting thing is, is that what caused my eyes so much pain was reading from left to right and having to constantly move my eyes back and forth like that. And then when I would go and sit on my Nintendo, the screen moved in front of me rather than my eyes moving. And so it didn't cause the pain that that the homework did. And that's actually a pretty common thing now in, um, in accommodations for, uh, assistive devices for people with visual impairments is a moving screen rather than someone having to move their eyes. Speaker 1 17:41 Yeah, I've actually noticing that now cause I prefer closed captioning when I'm watching a video and you're right, the, if it's real time cart, um, it will scroll up. And so yeah, you don't have to move your eyes. I didn't really think about that until now. What are the other, what are other things that make it easier for vision? Speaker 0 18:03 Well, honestly, the iPhone coming out made a huge difference for me because that is in and of itself and an assistive device that you just carry around with you in your pocket. I mean, I couldn't, I couldn't order at fast food restaurants. I couldn't go out to look at eat and look at menus that are up on a wall. I can't, I can't read those. So, so now I'm able to just pull my phone out and use my camera to zoom in or take a picture and zoom in on the picture and, and be able to see the menu, which is, which is something you know, nobody has ever really been able to do before without thousand dollars system devices. Speaker 1 18:36 Huh. Thinking about menus and glare and screens and yeah, this is, wow, this is a whole nother world that I'm learning through you and opening up my lens to it and thinking about what would you say is one of your top restaurants of having a certain type of venue that you really like? Is there anything out there that's doing it really well? Speaker 0 18:58 Or you were saying they're like, they're all crap. Well, I mean each one's going to have its unique, you know, advantages and disadvantages. I think the biggest pet peeve that I have with menus are the ones that are the menus where you just slide the paper within the plastic and you've got the reflective plastic over. And I know it's to protect the menu in the paper, but it doesn't cause us so much to layer on it. Anything that's a matte finish helps Speaker 1 19:21 Matt finish. I'm thinking of like waffle house. They usually have, they like wipe down the menus cause they're glossy. Yes. Speaker 0 19:29 They're always everyone laminate's their menus. And then that causes so much reflection with light and so much glare. Speaker 1 19:35 And so is it a matter of the glare because you can see or the glare because it's painful or a little bit of both. Okay. Huh. Oh this is like really, it's just really fascinating to learn listening to you. So the stickler Centrum, it touches more than just vision, hearing loss, joint pain or joint, Speaker 0 19:59 um, kind of stunt joint growth. And it can cause some discomfort. Like, um, for me when I, when I stand up or sit down, anything that involves bending my knees, my knees kinda sound like rice Krispie treats, you know, they sound like they just crack and pop all the time. And it, it does cause pain. If I put too much pressure on it for the most part it's just, it's degenerative. So things are going to slowly get worse over time. And I think I'm just now, once I'm getting to college and I've started working out more, I think I'm starting to notice the joint problems a little bit more. Speaker 1 20:29 Does the working out help you to build that stamina or do you think it's having a detrimental effect Speaker 0 20:36 throughout high school and then middle school? I wasn't allowed to play any kind of hard contact sports. I wasn't allowed to be very active. A lot of times I was stuck in my house, uh, after surgeries. So I, you know, I just up reading a lot and you know, doing a lot of video games and that kind of stuff and I wasn't very active as a kid. So now that I'm in college and I'm kind of out in a little more, you know, free to do what I want. I've been a lot more active and I think that that's made a big difference as far as you know, mindset and you know how I feel physically. Speaker 1 21:04 All right. I mean, are you in any on campus community clubs? Are you on any campus clubs where they are helping you or? Speaker 0 21:12 Um, well, so I'm, I am registered with a SDS, which is students with disabilities services through KSU and they're the ones who help accommodate me for all of my classes and give me some of those accommodations in college. Like I said, once the iPhone came out, that really cut back the need for a lot of the cysts, assistive devices. So I've more kind of relied on that. But that is, you know, a special privilege that you have to give and when you're, when you're in college, cause most people don't want you just sitting on your phones. And so, um, yeah, being, being allowed to have my phone in class, uh, preferential seating is, is a big accommodation that I have. Uh, being able to sit up front if I need to and the teacher kicking someone else out if they have to. Um, extended time on tests. I don't use a, I don't use scan trons which are very popular in college. You know, the little bubbles that you fill out. Those cause a massive strain on my eyes Speaker 1 22:01 cause the, the, they're so tiny. Yeah. And they're all really packed together. Okay. So spacing is also a key thing. Is there a preferred spacing? I was looking on word docs the other day, like 1.5 Speaker 0 22:20 I would prefer, you know, I'd prefer it to be 1.5 or double space, but font is the most important thing I think. Um, anything over 16 point is what I would prefer. And most of my professors that I have on on campus have been very accommodating with that. And they'll, if we have a test in class, they'll make a custom print out for me. That's a bigger font than the rest. And I'll instead of bubbling in on a scan Tron, like all the other students are doing all, you know, circle it on a test, which isn't bad because it makes me look really smart because it, it cuts back a lot of time when you're taking the test and not having to sit there and go back and forth. If you can just circle it down the sheet. I usually finish about five minutes before everyone else and they all just look at me like I'm crazy when I stand up and go turn it in. Speaker 1 23:01 He even got super powers and there's also so much margin for error going back and forth. You know, I just know I, cause I would do the same thing. I would actually circle it on my paper and then they were like, you have to transfer it. And I'd be like, no, I circled it on my paper. I just didn't transfer it over correctly. So. Okay. So sitting up front. So would you say distances us is a challenge. What's your depth of field? Speaker 0 23:26 Well, so, so my right eye right now, after one of the surgeries, they had to take my, uh, the lens out of my eye. So right now my, my right eye is considered something called a fake. It just means it doesn't have a lens, but that takes away just about all of your vision. So in my right eye, I can see, I can see colors, I can see movement and I can see basic shapes, but it has ruined my depth perception. That perception is kind of one of the biggest issues that I have. Like if someone's handing something to me, chances are I'm going to reach right past it to try and grab it or not reach far enough to try and grab it and just kind of miss it completely. Speaker 1 23:59 So like when people will try to give you a high five or a fist bump, it always ends up poorly. Yeah. And then do you just kind of make light of it, joke about it? How do you usually react in those situations when you know that it's, when you see that high five being thrown in there and you're like, Oh crap, Speaker 0 24:16 I just, I, you know, I tried, I tried to make it happen. I just, I do what I can to, to make it land. And if it doesn't then, then yeah, you just kind of have to joke it off. You know, you got to keep a light humor about stuff like that. Speaker 1 24:26 Yeah. What are some other humorous things that you do for yourself just to deal with it? Cause I mean, I'm going through the same thing. You know, sometimes you just gotta laugh. Speaker 0 24:34 Yeah. Well, I mean that's always kind of been my mother and I is saying is, you know, yet sometimes you just have to kind of laugh to keep from crying, you know? And so, so we've, we've always tried to have a good humor about it and we'll, you know, I'll crack jokes about my vision. I don't, I don't get too offended by them. But yeah, just just trying to keep a constant Lightheart about it is kind of the best, the best route I've taken. Speaker 1 24:54 It's kind of nice. Right. Having your mom going through the same thing, is it weird to see, I mean, how is she progressing? Is it like a mirror almost? Is that a little dumb? Speaker 0 25:06 She, yeah, she had one retinal detachment in her thirties and when at that time when she went to the eye doctor, he said, you have all the signs and symptoms of sticklers, but you have no familial history so we can't diagnose you other than she, she also has poor joint. She's had some knee surgeries in her older age and that's kind of it for her. I've had 14 surgeries total and I'm not even 21 yet. Right. So it is a little bit different, but she does know more than others about the syndrome and what, how it affects me going through it. It's just been me and her for the most part, you know, dealing with these surgeries and she was the one to drive me to and from Atlanta every week. She was the one to sit outside my room when I was having surgeries, you know, it was just, we kind of knocked that out together. So she, she does know how to, you know, talk to me about it and deal with me. Speaker 1 25:51 Yeah, that's nice to have that support system. Um, are there any other community support systems that you have for sticklers? Speaker 0 25:59 I'm not sticklers in particular. Uh, I have had some incredible, uh, specialists that have helped me. You know, the doctors, of course, they're the best of the best. And then in schools, the, um, the VI specialists that have helped me, you know, through school and they'd pull me out either for recess or gym or whatever it was, and they'd help me learn braille and that kind of thing just to get me prepared, you know, for worst case. And then, so I've, I've had a pretty strong support system that's, that's been with me through it. Speaker 1 26:27 So, you know, braille. Oh, okay. Nice. Does your mom know braille? Speaker 0 26:31 Uh, not as well. She, she hasn't taken any official classes or learning courses, but she, she'll have me teach her things and she'll kind of learn along with me sometimes when I'm studying it. And that kind of thing. Speaker 1 26:42 What you say is the scariest thing Speaker 0 26:44 for you? Um, thinking about five years from now. Well that's the thing is I think it's the uncertainty because it is, you know, my, it is something that's a traumatic that causes my rental detachment. So, and it is a degenerative disease, so it is something that can get worse over time. So I think it's just not knowing what could happen. You know, I could, I could have my retina detach going down the elevator leaving here and I, you know, what, what could I do about it? Speaker 1 27:10 Right. I mean, yeah, the exact same thing for me. I have no idea. That's the thing with progressive diseases. You have no idea how they're going to go and you just take it one day at a time and keep trucking and, you know, make fun when thanks. We had a little hard and um, yeah, clearly it's your, you know, how to overcome challenges. And obstacles and barriers and that makes you such a warrior different from the pack. So yeah, it's, it's really nice to meet other people that know what it's like to overcome those challenges, Speaker 0 27:44 their own unique story to tell. With this, you know, everyone, everyone has different things. You know, you, you may speak to someone else on this, on this podcast that's completely blind and their story may be just a hundred times different than, than mine. And just go a completely different direction. Speaker 1 28:00 What would you say to the world about fun facts about vision loss or progressive vision loss? Speaker 0 28:09 It's not a competition. We don't have to express how blind we are. And once you hear someone else has a, you know, a visual impairment, I think that that's been a big thing. And just, you know, not to focus on it too much, just like with any it, with any disability. No, I want to be treated normally just like everyone else does. It's just sensitivity to the situation and not delving in it too much. Speaker 1 28:31 So just recapping, thinking about menus and preferred seating and transitioning from dark delight, vice versa, other accommodations that you use or that have helped you? Speaker 0 28:45 When I was in high school, I use something called a Vizio book and it looks about like a laptop, but it has a massive camera on top. Could use that to flip around to the screen and zoom in on the screen. I could change the tones of it, make it warmer, cooler, you know, the contrast I could mess around with and I'm kinda changed. And that was a pretty cool device I used, uh, all kinds of different things when I was, when I was younger I had little little Globes, little magnifying Globes that I would use to dry read across papers and that kind of thing. Uh, but again, once I've gotten older iPhone and Apple's accessibility options, they've really helped tremendously with day to day usage. Speaker 1 29:20 What'd you say you prefer to limit your time on a screen? Speaker 0 29:24 Yeah, I, my eyes definitely get more tired than most. So as soon as it starts getting dry and irritated, I usually have to take a break. And you know, just look around and go, you know, look outside at something that's not gonna cause a lot of strain and then you know just focusing on things but too much is what causes the strain. So just I have to kind of let my eyes rest in between. Speaker 1 29:45 And then thinking about your, your future job, you kind of talked on, you wanted the, was it like a car salesman or more like an engineer tinkering around. Speaker 0 29:55 It's more in kind of the I am a public relations major so it's more kind of in that field with you know, sharing new releases, new cars with the community and kind of showing people what's new and what's next. Speaker 1 30:06 So more so in person rather than being on a screen or you know, being somewhere where it's dark. Speaker 0 30:12 Yes I'd like to be kinda inside the vehicles with the person. And normally that is vehicle sales. That's kind of the best way to do that. But the next level up is getting with NPR and marketing with one of those companies Speaker 1 30:24 headquartered. And that would be really cool to be in marketing and then creating content. How is it accessible for everyone? Speaker 0 30:32 I think that's kind of what stemmed from it. You know, people always say you want what you can't have and and I really started getting into cars when I started getting nervous as to whether or not I'd be able to actually drive. And I think that's kind of what started fueling that fire. And and ever since then my passion for cars was grown. And you know my, my difficulties with my vision has grown but it's all kind of just come around full circle and I'm looking forward to what, you know, what else it unfolds. Speaker 1 30:56 Is that your dream car? Porsche? Probably. I'm a big Porsche fan I think. I think across the board they've got the best. Cool. Anything else do you want to share? I mean we can just chat either one. This is really fascinating to learn about it. 10 year old self. Yeah, let's do it. Speaker 0 31:15 That's a really difficult question because 10 year old self me had no idea what was to come. 10 year old self meet on. All right, well I just got these three surgeries on my left eye out of the way. I was just getting used to, you know, my right eye being my strong eye and I had no idea that five years later I would be blind in that eye and you know, have vision back in my left eye. So. So that was a lot. I would probably try and prepare my 10 year old self for just kind of, I probably would have told him to be more, more involved and more open to the process once things started going downhill when I was 15 it hit me really hard and I mean that's a, that's a tough age for stuff to get serious. And so I think me just kind of shutting down for that year. I mean it didn't help anything obviously cause everything's still happened the way it did and I wish I would have been more, you know, involved with the process and more aware of what was going on at the time. Speaker 1 32:05 But that's not something that you can really change cause I just don't think that you're out of brain capacity to really take that in and understand what that's like. No, you're just not developmentally there. Speaker 0 32:17 Yeah. Well and I, I owe, I owe a ton to my mom for, for kind of walking us through that and walking me through that entire process and, and just making sure that I had everything I needed when I wasn't able to, you know, make sure of that and as different as different. Now that I'm in college, I've moved out of the house, you know, and I kind of have to fend for myself. It's, it's becoming more and more. All right. I've got to be more up front and honest with the I need, I have to talk to people if I've got issues. It's not, it's not my mom doing it for me anymore. Speaker 1 32:45 Yeah. I remember facing the same thing my mom was, I think your mom and my mom were very similar in shock. They're advocates for their children and do everything to the end of the world to make sure that we're successful and learning how to like fend for myself and like ask for things was definitely a new challenge. Speaker 0 33:04 Oh, absolutely. It's, it's really difficult because, you know, I having to go up to a professor and tell them like, Hey, this is not working for me. It's always awkward and it's always awkward having to go up to them on the first day and say, Hey, I'm Isaac and you're going to have to help me out a lot this semester. You know, it does get difficult trying to learn to fend for yourself a little bit more as you get older, Speaker 1 33:27 but not to take it that it's, you're a burden on someone that, you know, you just need a little bit of extra out. Speaker 0 33:35 Yeah, absolutely. And, and, and with, you know, with my impairments not being terribly noticeable, you know, I try to keep to myself for the most part with them, you know, I don't try to make them a big deal unless it's something I'm having an issue with. It's something I just, I've kind of always tried to deal with it internally before I've take it external and then make it everyone else's problem. Speaker 1 33:57 Has dating been okay for you, um, with the disability, have you had to disclose that at all? Speaker 0 34:03 Yeah, I mean it was, if it's someone we're dating, they're going to be, you know, accommodating of it and they're going to be willing to work with you. Um, it, it does cause some issues, you know, just little small stuff, but it's, it's nothing, you know, you can't work past. Right. Um, I'm sure there's some frustrations. The last relationship I was in, uh, you know, she became my iPhone when we were at, you know, restaurants and stuff. I was like, all right, what does that say over there? You know, what, what is, what, what is this help me out with reading that and you know, I'm sure at movie theaters when there's subtitles, you know, I have to lean over and be like, Hey, what did that last one say? How are the regular subtitles? The most recent movie I've watched with, with subtitles was parasite, you know, the one that just came out fantastic and it really wasn't too terrible. Speaker 0 34:50 You know, the, they, they did a good job of making it a large enough font that I could read. Um, I think the biggest issue I had was, um, just the movement behind it. Uh, they didn't have like a black block background or anything like that. Uh, so it was just, it was yellow words on, on the screen and I think if it would have had a, a, a background behind it, I know it would have taken away a little bit from, from what was being filmed, but it would've made a big difference with, with being able to read it. So having that contrast. Absolutely. Speaker 1 35:19 When you're adding subtitles or closed captioning having kind of like that black block. Yes. Or black on yellow I've heard is okay. Speaker 0 35:28 Yeah. Yellows yellow is the easiest on the eyes. It is, yeah. Just the golden rod color. It has the least amount of glare, the least amount of, you know, just vibrant. It's really on yellow while still being bright enough for you to, you know, be able to read it against some, a background. I'm sure all of our Georgia tech fans would love that. I'm sure. Yeah. I've had people ask me, you know, is there any accommodations that I use while I'm driving? And it's, you know, most people with visual impairments aren't driving, so there's not a lot of accommodations out there for that. Um, for me the biggest thing is just having some sort of full Mount so I can have my phone close to me. Because you know, recently when, when Georgia did their hands free law, that really kind of messed with me a little bit because I need my phone up close to be able to look at the GPS and then look back at the road. And so having to, you know, have my phone over in the center console kind of made it, made it a little bit more difficult to kind of see where I'm supposed to be going and that kind of thing. But I've been able to get the, you know, the right kind of Mount that'll let me, you know, keep it pretty close to my face and be able to see it. Speaker 1 36:30 What about driving at night and the glare with the red, green, yellow lights. Speaker 0 36:34 <inaudible> when I'm going through, when I'm going through a green light, I can't really see what's on the other side until I'm underneath it very blind. And then, then finally, you know, my eyes love Justin and hopefully another roads well enough so I don't have to do any corrections. Speaker 1 36:50 Yeah, that's a little terrifying. So as you say, you limit driving at night? Speaker 0 36:54 I, I try to, I try to drive at night as, as, as little as possible. Um, it's not something that's impossible for me, you know, I, I can still navigate. Uh, it gets really tough when it's raining. That's because light reflects on rain so much and I, I can lose track of the road. So if it's, if it's raining at night, I definitely stay off the roads. Speaker 1 37:11 Sure. That's smart. Just all right. Is there any type of windshield glass or windshield wiper that you've found is better or worse? Speaker 0 37:20 Not necessarily. I, I'm uh, I do like to have my, my front window tinted at least, at least, you know, the top little portion to kind of reduce glare from the sun. Um, but as far as glass now I don't, I don't think it's just pretty standard. Yeah. Speaker 1 37:35 I've also thinking about, you know, when you go out and it's really bright outside and you're going into a parking lot or just like an open parking lot is and it's a summer day, it's super sunny. Does that glare of all the cars, the silvers, Speaker 0 37:50 uh, that doesn't cause as many issues and especially, you know, when it is sunny out, I do have prescription sunglasses that I wear, uh, just to kind of keep the brightness down driving. Yeah. My really, my big issues when I'm driving during the daytime and like right now, you know, there's not even sun out right now. It's perfect. And so I don't have a lot of issues then. But once it gets down to night is when is when it starts getting a little bit more difficult. Speaker 1 38:11 So your ideal city would be something that's not super sunny and not super rainy? Speaker 0 38:17 Yes. Yeah, absolutely. Well, I ideally, um, I don't know that a city's the best, the best idea just because there are so many lights everywhere and then it does, that creates so, so many, you know, glare issues with me. It was a big transition. I'm from originally from Rome, Georgia and you know, there's not a lot of streetlights in Rome. It's kind of rural and especially where I lived, it was rural and it was just, you know, you relied on your headlights and so moving to college and Kennesaw and having to adjust with there being a streetlight every, you know, 50 feet and going from light to dark, it was a big adjustment at first. I had a lot of problems driving and Kennesaw when I first came, but I've, you know, started to adapt with it and then get a little bit better. And I'm sure it would happen if I moved to a bigger city with more lights. It just would take time. Speaker 1 39:06 So suburbia or rural, Speaker 0 39:08 yeah. More rural is probably better, which is terrible because I love the city. Speaker 1 39:12 Yeah. He got to make dude, she got to do right or figure out a way to live life in the city and make those accommodations. Yeah. Or working what I do a lot is working with legislators to make it easier or I'm working on a lot of wheelchair stuff right now, so know how can you make the world a more accessible place and that starts with you. Really. Yeah, Speaker 0 39:36 absolutely. I think, um, uh, a minor step that would make a huge difference is, you know, restrictions on some of the advertising. You know, some of the signs that they have shining on the road are insanely bright. Um, the Cobb energy center, you know, it has its electric screen on 75 and it's at night. It's, you know, gleaming across all, you know, six, seven, eight lanes. It makes it really difficult to see the, just the, all the bright LEDs and especially in car headlights too, the new LEDs are becoming, uh, a struggle for me. Speaker 1 40:06 I've even seen, there's a car that has a advertisement, digital screen on top of it. It's a moving car and just driving and it has this giant digital screen on it. And I'm only thinking like that's a huge describe distraction just for a regular driver. Speaker 0 40:22 I've seen those, I've seen those in New York. I took a trip to New York and they have a lot of those. And then I didn't drive in New York a little nervous to do that. But, but I can see absolutely how those could be. It could be an issue, Speaker 1 40:33 right? Just for the standard driver. Yeah Speaker 0 40:35 it will. Exactly. Yeah. And then since you know, I do rely heavily on my left eye, you know, cause that's where all of my vision is coming from. If something were to be on that side and then you know, uprooting that vision in that left eye, it's, I don't have a right eye to compensate for it. And you know, I can't just close my left eye if something shining in it. Speaker 1 40:54 Great. Thank you so much for your time. I'm really glad that you're here and thank you for opening up your world. To me. It's been really fascinating. I have been told I have a little bit of a lazy eye in my left eye, but that's about it. So I don't really think about going from dark to light, thinking about glare and reflection and Screentime and different kinds of screens. And so thank you for educating me and thinking about design, marketing, just being inclusive of everybody. Speaker 0 41:22 Absolutely. Yeah. You know, I'm, I'm excited. You know, this is, I have talked to maybe two people about my vision problems before, like truly opened up and discussed it with my mom and one other person. And I, you know, it was, Speaker 2 41:34 it was when I, when I saw you had this podcast, that's why I was so excited to kind of reach out to you and say I wanna you know, I want to be a part of this. Cause it's, it's important to kind of share that message. You know, I have internalized it for the most part and, and I think that doesn't help cause, cause then nothing changes. Right. And so it was, it was important to me to kind of be able to share, well, that's what we're doing and sharing it with the world. Feel free to text me at (470) 588-1215 I'd love to hear from you and let me know your thoughts, feedback, and what you want to hear on future episodes. All right, I'll see you all next week. Bye.

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