Starting a Student Disability Club with John Scurto

Episode 48 March 15, 2021 00:50:18
Starting a Student Disability Club with John Scurto
Freewheelin with Carden
Starting a Student Disability Club with John Scurto
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Show Notes

Starting a Student Disability Club with John Scurto hosted by Carden Wyckoff

Transcript https://rb.gy/pt7aat

Who is John Scurto?

John Scurto, 23, is from Boca Raton, FL and has a form of muscular dystrophy called spinal muscular atrophy. He is currently an MBA student at the University of Florida. He also serves as a Board of Directors Member for a nonprofit organization called Laughing At My Nightmare, which provides equipment to individuals living with muscular dystrophy.

Resources

Instagram: @john_scurto
 

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Episode Transcript

Speaker 1 00:00:04 Hey, and welcome to free. And Mccartin podcast. I'm your host card and wife off wheelchair warrior and disability advocate based in Atlanta, Georgia. On this podcast, we will even creating an accessible world strengthened by supportive allies to build inclusion and belonging. We share stories from people with various disabilities and help break down barriers for the disability community. If you like what you hear on this episode today, please rate, review and follow this podcast. And I'll say it again. Rate, review skive and follow to this podcast and share it with a friend. You can DM me on Instagram at Freewheelin with carton and let me know your thoughts. Give me a follow. And if you want to come on the podcast and share your story of advocacy and strength would love to connect with you. If you haven't downloaded the app, I access life is a mobile app that rates and reviews Lisa's on the built environment to break down barriers and transparency on the bathroom, the interior, the parking, and anytime that you go into a new place, you can find I access live on Google play and Apple app store use the referral code carton, C a R D E N. Speaker 1 00:01:19 When signing up today's guest is John Scordato he's 23 and is from Boca Raton, Florida. He has a form of muscular dystrophy called spinal muscular atrophy, also SMA. He is currently an MBA student at the university of Florida and serves as a board of directors member for a non-profit organization called laughing at my nightmare, which provides equipment to individuals living with muscular dystrophy on this episode today, John and I talk about COVID and how that has impacted him and getting the vaccine Nelson talk about representation and the disability community in the entertainment industry education and how the accommodations that he's been given to be able to succeed in person and also in the digital world. And a lot of other stuff about just being disabled and what that's like. All right, enjoy. Hey John, welcome to the podcast. How's it going? Speaker 0 00:02:22 We're good. Carving, thank you so much for having me Speaker 1 00:02:26 I'm doing well. This is a great day record a podcast. Talk about, we're going to talk about a lot of things. If we were just chatting in our, pre-interview talking about education, getting your masters, talking about your disability club that you're leading at your college and then also, or I guess your master's program, and then talk about just feeling different growing up as a child and yeah, I'm really excited. And the vaccine and COVID, so we got a lot of stuff to talk about today. So kind of give you the floor if you want to share, uh, your journey growing up and what that was like, and we'll take it from there. Speaker 2 00:03:01 Yeah, of course. So, uh, I'm currently 43 years old. I live in Boca, Raton, Florida. I have a condition called Slido muscular atrophy. It's basically a form of muscular dystrophy and I've pretty much been assistance with like all physical light. Nice. I really only have use of a couple of fingers and I use a power wheelchair and drive around and just growing up, I spent a lot of time in the hospital. All right. We're asking him to get sick and that one's hurting from the moral year. And there's some times where I just didn't blank. I think over a hundred days in the hospital, just one year growing up. So definitely in and out of the hospitals a lot, but I'm really that, I mean, I've heard, I haven't pretty, I guess, typical childhood aside from all the hospitalizations and I'm, my disability has impacted my childhood and went through school. I had, you know, interactions with friends. I had friends at school, so yeah, as the years progressed, my parents weren't houses take care of me, keep me out of the hospital. We got the equipment we married and ultimately things just got better as time went on. Speaker 1 00:04:23 Thanks for sharing some of your background history and to feel like, you know, you kind of just want to be a child and kind of just integrate and assimilate with a lot of the other kids. And I know that was like growing up, my progression didn't really start hitting until I was in high school. But during that time in high school, I was like, you know, sometimes I kinda just wanna feel like I want to just go out and like run around just like with the other kids. Did you ever feel that growing up? Speaker 2 00:04:52 Yeah, so I, um, I've never walked before. So I've been driving a wheelchair since the age of three years old, Speaker 1 00:05:00 Or I like to say rolling over people's feet at such miles an hour with pride, Speaker 2 00:05:11 I would say 99% of the time, I physically am usually the only one in a wheelchair, whether it's in school or just out in public. So I do feel different, but at the same time, you know, I, I frame my mind to just always be positive and be grateful for whatever situation I'm in. So the slight, you know, feeling sometimes rest out every recess and elementary school while I see all my friends playing on the playground or playing soccer and I'm not able to partake in that connectivity. I was just, you know, be grateful and we from able to group school and to have friends. So yeah, I mean, it was definitely a struggle, but it's to having a positive outlook on it. Speaker 1 00:06:05 Yeah. I think that's so important having a positive outlook, but also is like, we need to have the world to be built better. Um, and mindsets and attitudes changed to be more inclusive and understanding that, okay, I don't want to just be a kid on the sidelines of the playground and not be able to at least roll with my wheelchair up the ramp, you know, uh, on the platform to be around the kids. You know, and I was talking a few episodes ago with a nonprofit organizer who leads inclusive playground designs. And I was like, wow, that's so interesting. Right. How the shift of, I think we've come so far with disability inclusion is that, you know, it started out as Judy human likes to say, you know, I was, I was a fire hazard and I couldn't attend school. It was illegal for me to do it basically. And now we're coming to, okay, well, let's start designing playgrounds to be more inclusively. So all kids can start to play. How do you feel about that? Speaker 2 00:07:06 Yeah, I think it's super important. I honestly feel it any setting or any, you know, like a playground. I think every playground should be accessible for people, whether they're in wheelchairs or at any of those signs of disability or if they don't have a disability. And he simply says that, you know, you matter, right. I have someone we're in this really. We want you to also have a good time and wear a great ground. So when something isn't accessible, that's indirectly making a statement that, you know what we built this playground, but it wasn't really built for you when you really just don't know in this setting. So yeah, it, it happened Zuora. I was on three though, and it can meet in is for full, but hopefully they'll as times aggressives people can be more open-minded and make things more inclusive. So we can just live in a world where everyone can enjoy that playground. Speaker 1 00:08:09 And you're doing that right now, trying to change those mindsets and attitudes towards the disability community in your master's program. Talk about the disability club that you started. Speaker 2 00:08:22 Yeah. So I'm currently an MBA student at the university of Florida and it was actually very go dogs. We have a little friendly rivalry, but yeah. So during orientation, they were actually talking about all the student organizations that you can become involved with. And as they were going through the diversity and inclusion from groups that they had, I moved to, they didn't have one for individuals with disabilities. So I basically reached out to the president and the vice president, and I came up with Viv of, Hey, we shouldn't have this part of the organization. So thankfully I'm very thankful that they were open to my idea. And I became the president and founder of originally it was called the differently abled forum, but through my research and through worrying about this, really, as we just see, and including, I learned that that term can be offensive to individuals because it gives them this ability from theirs since in three and more inclusive environment and crumble of people can enjoy, we've seen some names for the Gator MBA of newly club. So I'm really excited about that. Speaker 1 00:09:51 Yeah. And kind of set the stage for me for what kind of talks that you have, what kind of guests that you bring in and what has been the reaction and the response to those who are allies, but also those who have disabilities that are part of the group. Speaker 2 00:10:07 Of course, yes. We time about four, four or five events so far and from some of our events for just a disability overview. So all of this many types of disabilities have a missive as an ally. That was our first event kind of just kick off the club and have a very positive, uh, positive feedback and positive reaction. We had another event around visibility and language, so how to, you know, use inclusive brainwaves. And we also had an event last week on now mental health. So it was just, you know, like a mental health workshop. I feel like there's a lot of emphasis on w when people think of disability, they think of physical. I feel like mental health is in New York. And I just thought it would be really important to bring up that topic. And of course we were so thankful to have you, as one of our guest speakers to talk about your experiences, like in the civility and just kind of me very affidavit. It was a great event. And we really thank you so much for being a part of it. Speaker 1 00:11:21 You're welcome. I'm so thankful to be a part of it and just kind of continue to share the lens that I experience and look through. And my eye it's been progressive to, you know, I have muscular dystrophy just like you. Um, and, or I guess you have metrical Astro atrophy, it's, um, a little bit slightly different, but it's similar concept in that it's progressive over time and my life, what it was at one point in is not the same as it is today. And it's still not going to be the same in a few years from now. And so why do you think that people should care about understanding and listening to other people's stories about disability? Speaker 2 00:12:13 Well, first disability is actually the largest minority group in the world at around. I think it's like 25%. So it's this sort of importance of being inclusive for all people. And ultimately visibility can happen at any point in one's life. So that, that also is a familiar reason why people said, you know, these frames on how to be more inclusive and be varied to individuals with disabilities, but above all, is this the right thing to do? Like as a humanitarian and a person in the world is to be kind and caring and inclusive for all people. I think if you just present ancestors from that, that ancillary thing for you, there's really no more that you need to answer it. Speaker 1 00:13:10 How do you feel that the conversations that you're having at the, at the MBA group that you're leading, how has it propelled in a way that's really exciting to you? Speaker 2 00:13:25 Yeah, so I was originally, I was, you know, curious to see where, um, our attendings and how the reaction was going to be with this race and this club. I was curious to see, right, where are we going to have a lot of people important record? We're interested in this. And I was actually very surprised there, you know, our tenants, we have more 10 needs, then I would say <inaudible> within there. Uh, and that's really encouraging that like people actually, yes, people actually want to work and they want to do the right thing. And I think that should also be in testing that there's not really a whole lot of outlets out there for invisibility as a Jason or maybe people are not really aware of the outlives that are available. So there's been maybe a disconnect, but I think people actually want to learn. And I'm happy that we were able to deliver this organization where students can learn in and become a better ally for the disability community. Speaker 1 00:14:37 That's so cool. I love to hear it. And obviously your MBA program is only so much time, right? You're not going to be there forever. So when you roll away into the next phase of your, do you feel like that you really accomplished something there and do you feel that you are going to leave a legacy that is going to continue? Speaker 2 00:15:00 I really hope so. I sent her from Mason for, you know, what the club could be the clovers long way. I think my six months old and we've already accomplished so much, we're going to be graduating next year. And nice. So I don't really have a whole lot more time with, so hopefully the, we, you know, our students in the program that come after me by Kansas continuing the progress that we made so far, I hope they I'll do when I'm done, because I never, I've only had the quote for six months and we created it from scratch. Right. I didn't even have that from Mason of, you know, this is what we're going to do. It was just all fresh ideas. So I'm excited to see where the next wave of students and what they bring from the club. Speaker 1 00:15:51 Cool. I love to hear it. I mean, it's also just the way that the disability movement happens, right. It starts, and it started back in probably the seventies, as far as we know with Judy human and, um, the black Panthers and that those organizations and, you know, continue throughout the years, we're seeing disability inclusion through other advocacy orgs, and it's really creating this conversation around kind of like this civil rights, 2.0 disability rights, 2.0 movement. And I just think that's so cool that we're continuing to chip away at this iceberg of feeling discriminated against for so long. And people are actively wanting to listen to us and they want to help. They just don't know how so, what are some pieces of advice that you would give to our ally community to be better advocates for the disability community? Speaker 2 00:17:01 Yeah, I would say it's definitely very important to actually prompt in his rules who have this new theories and this listened to their experiences and how they was, you know, things could have scenes in terms of the outside, from the enemy people can serve as their allies. I think that's always a mislead as sight actually hearing it right from the source. I mean, there's so many podcasts like podcasts linking your installation. That's definitely a great way to hear from a, when people who have this real reasoning, that's their ally. That really there's a book. So various, well really it's this as a Haitian, like educate yourself. Right. You know, um, to be the person that you could leave this affiliation community. Speaker 1 00:17:54 Yeah. I like it. Okay. You're going to kind of shift the conversation towards your experience because have you experienced college in person, but now you're doing your MBA all online, is that right? Yeah. Right. Okay. So kind of talk to us about that dichotomy, having a disability and what that was like. Do you, have you found that the college is that you in the universities that you're attending, have they been accommodating or, uh, with having a disability being in a virtual versus in-person environment? Or do you find the in-person as was better? Speaker 2 00:18:33 Yeah, so I attended for the Atlanta university for undergrad and I attended that fully in person. And now I'm attending the university of Florida entirely versus fully remote. So it's definitely a, they, you know, sift between into, but I'm very thankful to say that both of my experiences at four, I ran a university and the university of Florida, they've been very accommodating. So I'm moving to Versity's. I am flied wait the disability office to request the accommodations that I need. And thankfully I, I saying 90% of the time, my professors are very accommodating. They're willing to provide me with any accommodations that I need because ultimately they want to create that vivid learning experience for me. So, yeah. Speaker 1 00:19:32 Yeah. That's really great to hear that the, the professors are very much accommodating. I struggled when it, so I went to the university of Georgia from 2011, 2015 in 2011. I mean, that was 10 years ago when I started, I think it was still very difficult to work with some of the professors, the university of Georgia has an incredible disability resource center. So that wasn't the problem. It was sometimes the professors had resistance and that was the problem, but it's really great to hear that, you know, 10 years, you know, eight to 10 years later, it's shifted to be more positive and more inclusive. Can you share some of the accommodations that you ask for in university? Speaker 2 00:20:17 Yeah. So it's, it's really, it's been different because of the virtual environment. So typically we're in-person is this a new pager during class to take all my notes? That's really going to mean in class accommodation, besides also having like an accessible desk that I can use my laptop long. And then for exams, it's just extra time being able to have a, you know, like a private room or like a, you know, like an isolated saves reachers. I do use assistive insolvency, right? Dragon naturally speaking from actually talking into the headset and it's typing out whenever I say so, because of that, I have to be completely along when I'm taking my tests and not disrupt every students, but because things have been virtual now I am know. I mean, roughly accommodations speech was passing all my classes online, made typically or recorded. So I'm able to watch them at my own pace, rewind and take notes and cars. So now I don't really need that new feature as I would in the in-person classes. And then a year for me, exams, it's basically the same, say I'm a common, nascence just extra time for reading exams. And a lot of times we have issues with the fracturing brewing system that they use. It's not, um, it doesn't really work well with the assistant technology, very used. So from friends, I mean, my professors said, Brian, pass that Speaker 1 00:21:57 Interesting. A lot of the combinations that you're describing were very similar to what I had. I had a note-taker in all my classes. I had extra time on tests. I had a private room and a accessible, more ergonomic friendly set up and had a desk or the front row seat in the stadium seating classrooms. And then the university of Georgia campus is very old in a lot of the buildings, especially the North campus. And so those were some of my undergraduate, like first year classes, they were all on North campus. Cause they were like English and Spanish and kind of stuff. And they would move the classroom because there was no elevator in those buildings and cause they're historic. So that was something that was really cool. Cause then they ended up moving it closer to where I lived more on the South side of the campus. So it, it uh, was a good benefit, but that's interesting that, um, didn't really think about how you have less accommodations being virtual because yeah. Everything's recorded. So it's really nice. Cool. I'd love to hear it. Thank you. Okay. And then the other topic that I'd love to talk about is how COVID has impacted you and your disability and what are some of the accommodations and how you've been adaptive with the pandemic and what are your thoughts on the vaccine and waiting for that? Not being prioritized, all the things. Speaker 2 00:23:33 Yeah. I mean, I can't believe we're where we've been a year since we have been, you know, you would go crazy. Yeah. It's very warm. Like literally this Speaker 1 00:23:46 Time last year was the F about the first week or so where they started saying, okay, we're going to start shutting down things. Speaker 2 00:23:54 Yeah. I mean, for three, I was actually supposed to go on a cruise, wait three of my family members a week that everything's sort of sitting down for me. Sorry. But we will do that after COVID is over. But yeah, I mean, COVID seemed as soon tough I've three months we've been home isolated for about a year now. I will only go like outside and do like car rides. And if I am seeing people it's outside, you know, 10 feet apart within that squad and it can be difficult to communicate because sometimes it's difficult to hear people when they have a mask on, you know, sometimes people have trouble hearing me when they're 10 feet away where I have my mask on, so can mean sounding. But you know, I feel like this time is in too great to really weren't having to adapt and the silly, you know, make those connections. Speaker 2 00:24:58 So I have been using zoom everyday, say sign every day to communicate with my friends and family for those school. So yeah, it's definitely then this new infidel, you know, the way they communicate mostly, it's definitely not the same as, you know, face to face and in-person connection, but I really hope that, you know, we will get through it. I don't know if the vaccine is rolling out and the numbers aren't going down for my story of the vaccine. I actually received the important thing. Forget it last Monday I show up and they need to believe in, I mean, because I wasn't 65 or over, and I wasn't a home care worker. Yeah. So that was so messed up here. But thankfully there was a moment's waste that was offering it to T4 with medical conditions. So I was able to hear it or <inaudible> amazing now thank God for the vaccine. Speaker 1 00:26:07 That's awesome. And I have to, and um, that's really horrible to hear that you got an appointment you showed up and the amount of effort that it takes to get someplace can be difficult. I don't have a car. So it's like, okay, I would have to coordinate sidewalk, bus, train, all the things and then being denied. And that takes, you know, an hour or so to get anywhere in the state of Atlanta and then to be denied access. It's like, am I not disabled it as bad as that is? Um, it's, it's really unfortunate that we are not prioritized on the COVID vaccine list. And I know some States have made amendments to the one, a one V roll-outs and have opened it up to allow for certain types of disabilities. I think in Georgia, they just opened it up to parents with children with disabilities. Speaker 1 00:27:14 And then there was some other clause in there about disability. But I went with my, my mom is a teacher and they just opened it up for teachers in Georgia. And she was like, carton, come with me because maybe by chance we can, you know, show your disability, the little, uh, car hang tag blocker that has the accessible parking. We can say that and show your wheelchair and look as if you're so helpless and that I'm your caretaker. And then, um, but it worked and we got there and I got, we both got the vaccine and it was awesome. So yeah. Anyway. Yeah, I think it's a problem that we have in the United States, uh, seen as not being rolled out to everyone. Speaker 2 00:28:04 Yeah. Well, I feel like the situation, you know, they weren't really prepared for a pandemic. And I think that they're thinking, you know, on the fly trying to, you know, get this vaccine rolled out, but yeah, it should have been done in a much more organized fashion and it should have been more inclusive to individuals who have medical conditions are at high risk in that only individuals who have medical conditions, but also their family members in their household as well. It's very important that everyone in the household gets it. Right. Yeah. It could have been better, but you know, hopefully with time with more prevent seeing that things will and through maybe a better I'm hopeful that will happen. Speaker 1 00:28:57 Yes. I'm hopeful. And we think we just got approved in Georgia to have our big Mercedes-Benz stadium, which is a beautiful stadium that was created a few years ago, hosted the super bowl two years ago and they just approved it to be a new vaccine site. And they're going to be, I think they said, they're, they're going to be doing 6,000 vaccines a day, which is like ridiculously insane. That's awesome to hear it. And they said, they're going to open it in the next few weeks. So I'm trying to get the second dose because I got the Pfizer one and the place that we went to originally, they don't have any appointments for three weeks and it kind of is messed up to think that, so you get the first vaccine, but you don't get priority to get a second vaccine. So if I, it feels like they're just trying to get everyone at least one vaccine so that they get at least what is it, 50% immunity. Speaker 1 00:30:01 And then it's kind of, well, whatever, whoever can get the second vaccine to get it. I mean, just got to keep stalking the websites, but yeah, it's, it's been kind of a cluster for a lot of people, but hopefully we're, we're seeing the end of it. And I know the Johnson and Johnson one just got approved. That's a one, one shot vaccine. So yeah, it's, it's hopeful. I think for a lot of people, it just would have been really nice to have disabilities because I mean, we have a lot of us are, have chronic illness. A lot of us have issues that affect lung function like muscular dystrophy and muscular atrophy definitely affect lung function. I don't have great lung function and lung capacity. And so COVID really kills the lungs is, uh, it really affects the lungs. So yeah. I don't know how a lot of thoughts on, so Speaker 2 00:30:54 Yeah, no I'm, uh, hopeful that, you know, with the vaccine rollout that things will get better and hopefully, you know, this can also be a good learning lesson for everyone just has been Heising and, you know, safe Syrians, Harry rank, even before, like we were still very much crosses of germs sequence of re you know, times in the hospital where I was, you know, in the ICU with pneumonia. So we were very classy. So, you know, making the square movie screen. And I really don't say like, you know, too close to people or I do like to hear a little bit of a business just to have that, you know, barrier for any potential germs. Speaker 1 00:31:44 Hmm. I saw this, uh, tweet this morning actually about how Netflix is pouring in. I think it was $10 million on disability inclusion. How do you feel about that Speaker 2 00:32:03 Big that's amazing. I think that, you know, in entertainment very rarely do I see an individual with a physical, visible disability and when there are movies or feels that, you know, the here, if you're having this really is to be played by someone who doesn't. So yeah, I, I love it. I would love to see more companies, more NCCN when companies make a commitment to having, you know, people with disabilities as actors and, and also behind the scenes as well. Yeah. I think it's great to have that representation. They just, I think the whole problem with, you know, venture community is that a lot of people are not really exposed to individuals with disabilities in their day-to-day like on TVU and reserves. They want for being, having more representation in their day-to-day life can help it's everything we're, we're making progress and things aren't giving me perfect, but we just need to keep striving for making Sarah. Speaker 1 00:33:18 Yeah. It starts with companies that are in the limelight to really push that change and others will follow as much as you want everyone to, to be that leader. It's not always the case. So it's great to see that a company such as Netflix is working to, they recognize the problem and they're working to, to change that, which is really awesome Speaker 2 00:33:47 Here, man. <inaudible> but you know, I'm excited to see the, the outcome of, you know, w okay, so they're looking for it, you know, plus $10 million for a disability or something evasive, but now I want, I want to actually see, like what movies and what, so it was like running around ground they're out. Like, I'm, I'm excited for that. Speaker 1 00:34:09 Yeah. I mean, I would like to see it's a combination of visible and invisible disabilities and not portraying disabled characters as a pity story or a charity story or sickly, and they're dying and it's a tragedy at the end. Cause that seems to be the common narrative or as we all need caretakers and we're helpless. And I mean, take a look at, uh, it's just, what was it? Uh, we, before you, uh, and, and then there was, uh, that was a tragic story of someone so angry at their disability and wanted no, didn't want to be a place in the world. They wanted to die. And it's like, not everyone feels that way. Who's disabled, but that's the narrative that you're setting is that it is a horrible reality to have a disability. And that's not the case for everyone, so, right. Speaker 2 00:35:10 <inaudible> would say I'm a person and I don't really have arrived for closers and people with disabilities. And I run the movie me before you, and this is like the only kind of like education about this movie that I'm going to have. And it's about an individual who is so, um, certainly his life that heals really, those allow it anymore. Right. That's this of them. Then it adds like in that same blend for disabilities. So yeah, I'm looking forward to seeing what an effort says. And I also think it's really important if they start including this newly in their movies and in sales, that is a secondary. So if a character, most having disability, I really don't want to see this focusing on what he said, like they care UMass and the disability itself, and we're going to see an emphasis on reversing their qualities, what they like to do and having this newly be threatened married. I think that person first, absolutely. Always. Yeah, always, Speaker 1 00:36:21 If you haven't seen the Netflix series in the dark, it is about a blind woman. However, the, the actual actress is not blind in real life. So a little bit of a, not so great there, the supporting actress actually is blind in real life and they both use walking gains the way that they, I guess, have her character development, character development, I think is incredible, the main character. And they show the person first and she is such like, I don't give a crap about anything and anything, and blindness is secondary. And, but it, it creates it so that you can see the challenges that she does go through on a day-to-day basis. But it's normalized in that, you know, this is just her life and this is how she gets around and does things. And she just doesn't care about people. And she is, has an alcohol issue and gets involved with some bad people, drug dealers and all that. It's kind of a very interesting story. It's a little funny, but, but no, I think that's probably the first one that I've seen where the disability comes second, but it's shown in a way that, you know, the disability, there is part of our life, but it's not the primary focus. And that's what I like about it. Speaker 2 00:37:58 Yes. I mean, it sounds like a great show. I have to check it out. Speaker 1 00:38:05 In my opinion, it kind of goes South a little bit after, uh, after, uh, I think there's two seasons maybe, but in the second season I was like, all right, you guys are so involved with drug dealers now. And like they've dug themselves their own grave and they can't get out. It's kind of funny. Um, but the first season I thought was really great. I was like, Oh, this is interesting. I can get down with this, but yeah, more disabled characters playing disabled roles. And that's, that is totally impossible. There's a lot of people out there with, and the other thing about it is you're asking, you know, what are some of the, what are some of the movies and the narratives that are going to be played portrayed for those characters? And, you know, if it's, I want to see like a disabled character behind the stage waiting to go out on it and is going to receive an award, or I don't know. Some of those things that you would not think that someone with a disability would be included in and they are for sure. I don't know. Speaker 2 00:39:12 Yeah, no, I agree. And I think, you know, people with disabilities, they live typically lives. I mean, we, you know, have fun. We go out, we have, you know, good signs and I feel like that needs to be for Instagram and representing in these movies and shows. And you're not serious. You know, people with disabilities who are at home sad and depressed. I mean, yeah. Um, sort of, there are people with disabilities that feel that way, but that doesn't reference anything. It's hard visibility. Speaker 1 00:39:51 Someone asked me this the other day and I want to ask you, and it's pretty intrusive, but, um, and just this random stranger just asked me, do you wish you weren't disabled? And I was like, who are you? Why are you asking me that I don't even know you? Do you wish you weren't disabled, John? Speaker 2 00:40:14 That's an impressive, um, I would say this, that I have a great wife and my, this nursery has taught me a lot. It's probably it's new, you know, maybe the Haitian to care for me or <inaudible> to be adaptive. So honestly, I don't think I would say to anything, right. If I had to work three, however ways where I would not have, this is not me anymore. I honestly think that I would like to this campaign, my wife, the way they have seizures also. Sorry, great. People have committed to my wife because of my disability. Right. Are you kidding Speaker 1 00:40:58 Me? I know I'm pretty great. Speaker 2 00:41:03 But yeah. I mean, I honest Speaker 1 00:41:08 The answer, John, I like it. That's what I was hoping to hear. And yeah, I feel the same way. I'm like, I wouldn't want it any other way. Speaker 2 00:41:15 Yeah. And like, I wouldn't say my, my, my, my disabilities who I am. I think he kind of helped feed the person I would come and who are striving to ultimately mean the world where there's someone who wants to give back and help others. And I think that's really because as someone who has a disability and means to receive that care and that help from others, it's basically made me motivated to help others as well. And I don't know if I ever would've learned that lesson or if I would've gotten that if I didn't have a disability. So if Ryan just knowing you can ultimately help over in people in their wives, then it's worth it. Speaker 1 00:42:06 Nice. Well, thank you. I appreciate you saying that. It's a great answer. I get the most absurd questions when I'm out at the grocery store or when I'm, I go to two places that is the grocery store and the park, and those are the only places I've been in a very long time. Um, yeah. I get the most absurd questions all the time. I feel like, I don't know why do I come across as someone that should be asked those questions? I don't know. Speaker 2 00:42:39 What's the most absurd question that you ever got. Speaker 1 00:42:42 That's definitely up there. Do you wish that you were disabled and I'm like, why? Like, why did you even think that way? Why did you think to ask someone that you have no idea about maybe because it's like the chances of me ever seeing that person again is probably very low and I didn't know their name. I don't know who they are. Maybe. I don't know. Um, I've also gotten things like, Oh, you know, things like I'll pray for you. And so that you can walk again and not, um, I, I have a magic healer that I can set you up with and they can help cure things. And like, I don't, I don't want to be pray for the ally community to be better supporters of us and to help remove barriers in the world, put your prayers there. Don't try and pray for me to fix my disease. Not that I don't wish for. It's not that I don't want the progression to stop. Cause I personally don't want to continue progressing. It just gets more and more complicated and more and more expensive. And, you know, I would like the progression to stop. So I am looking for a cure and that's coming in the next six years or so. And I guess that kind of reminds me of SMA. I know a friend at work is getting the, uh, SMA drug habit. Speaker 2 00:44:10 There's actually three there's three there's, three <inaudible>. Yes. Speaker 1 00:44:16 Are you, do you have any of those or access to those? She has gone through just a whirlwind of fighting insurance and it's expensive and just, it's been, it's been really sad to see that very fortunate Speaker 2 00:44:32 To, um, I was on the first ever observed treatment called Spinraza. I've heard that. And now there was a mistreatment that came out last Argus groups of lamb, and now I'm on that one and that's called a refund plan. So basically sin Raza was like inferred vehicle in sections and fine. And then yeah, Speaker 1 00:45:00 Really bad spinal headaches of, and it was like every eight weeks or so. And it was so miserable. Speaker 2 00:45:07 Yeah. It was definitely a pretty intense, but now <inaudible> basically oral managed he's in the ICU every day. Speaker 1 00:45:17 Totally transformative Speaker 2 00:45:19 And seeing the results and seeing that. So, yeah, I'm happy and I'm really excited to see the seeds for what SRA is going to look like down the road, because that's a cool four years ago, there was no FBA treatments available. There were free. So I'm afraid. Speaker 1 00:45:41 What are some of the benefits that you've seen and how, how long have you been taking that or the drugs entirely? Speaker 2 00:45:49 Yeah. So I think even my first frightening in September of no, actually I'm sorry. It was November of 2017, so yeah. And I've noticed some great improvements strengthen my arms and hands for H I would say about 10 years ago or so I lost the ability to flip my on the hair on wait Joyce, say for driving my wheelchair. And I got that from coming back a few months after taking Elsa. Oh my goodness. That's incredible. Yeah. Just a little things, right. Just a little thing. Yeah. Being able to like move my hand, like <inaudible> um, yeah, it's just increased Sarah being able to swallow better to breathe better. Right. I would say before my treatments, like I wouldn't be able to wait, talk like nonstop for more than like three minutes, right? Yeah. Where are we now? We've been talking like almost an hour and like, I feel fine. Like I'm not like Arab or struggling to talk, so that's definitely, or a vaping benefit from the treatment. And we're very grateful. Yeah. Speaker 1 00:47:13 I noticed when I do hour long presentations, I get really winded and I'm like, okay, am I breathing too hard? So yeah. I really have to pace myself and take some breaks and allow I've noticed now. And when I do presentations on disability advocate, when I say, okay, now audience answer a question, put it, give me, you know, and that's two or three minutes that allows me to just like catch a breath and not feel so winded. So yeah. I definitely feel the lung impacts and that's been more recent in the last year with the MD. So yeah, that's, it's really great. Just, Oh wow. That makes me so happy to hear that for you. And again, it's like, you're not you're or how do you feel about, I don't know if anyone's asked you this and I really hate this question, but people always ask me like, Oh, well, when you get cured, do you see yourself running again? And I'm like, don't think so, maybe that would probably be like 20 years of treatment. I feel like, Speaker 2 00:48:30 Yeah, personally, I think I've come to terms, right. I'm probably never going to walk or not usually a wheelchair. I've come to terms with that throughout my work life. And you know, I'm happy with whatever, wherever it happens, I'm going to accept it and take it and make the best of it. If someone's of life and just sitting around one thing, like all my ways, I don't want to waste time and waste a years of my life hoping for something that name never happened. So I got there things that aren't Speaker 1 00:49:14 We got that I think we got, we got people's mind sets to change. Okay. Awesome. John, this has been such an incredible conversation. I really appreciate your honesty. And we talked all about COVID and your abilities club and representation, so many things, and then treatments and how that view is on the disability community. So I really appreciate it. Speaker 2 00:49:41 Thank you for one scoring. I'm so grateful and honored to be hearing your podcast. I really appreciate it. Speaker 1 00:49:48 You're welcome. All right. We'll chat later. Bye. Speaker 2 00:49:51 All right. Thank you, Corrine Bri. Speaker 3 00:49:57 Thank you friends for listening. Please rate and follow this podcast. We're text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.

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