Speaker 0 00:00:00 Hey, and welcome to free will. And with carton podcast, I'm your host carton, Lakoff wheelchair warrior and disability advocate based in Atlanta, Georgia. On this podcast, we believe in creating an accessible world, strengthened by supportive allies to build inclusion and belonging. We share stories of people with various disabilities and help break down barriers for the disability community. If you like what you hear on the episode today, please rate, review and follow this podcast and share it with a friend. I'm giving a shout out to my friends that I access life. It's a mobile app that rates interviews places on the built environment to write down barriers and transparency on the bathrooms, interior parking. And anytime you go into a new place, you can find the I access mobile life app on Google play and Apple app store use the referral code card in my name C a R D E N.
Speaker 0 00:00:55 When signing up today's episode is a little different. It is my interview on Alison hair's incredible podcast, culture changers, and it was recorded aback right before the pandemic hit in early 2020. I figured I interview a lot of guests, but you don't really know much about me. So I'm here to share my story. Alison is someone that I look up to. She's my coworker mentor bad-ass of a mom. And the reason I started this podcast in the first place, I am forever thankful for her because she is the type of person that pushed me to continue to create and spread the mission of accessibility and disability inclusion. The podcast was recorded last year. And so the name of her podcast has changed. So look her up on culture changers and rate and review, subscribe to her podcast as well. All right. I hope you guys get to know a little bit more about me. DM me on Instagram at free Whelan with carton. Enjoy,
Speaker 1 00:02:06 Hey, I'm Alison Hare, and welcome to bright this way. The podcast set interviews, the culture changers that are reshaping our world and breaking new ground and inviting you to make your own Mark. We are living in a world with a ton of restrictions right now. In fact, we aren't sure if we can even go outside depending on where you live. And one of the most heartwarming and incredible sunny parts about living through a pandemic is to really think about other people's lives with compassion. And there are countless people known as essential workers, risking their lives every day to keep our world safe, healthy bed connected and keep the world moving. I'm so grateful to those people. And by the same token, we are thinking about the needs of others. We're considering how other people live and how can we safely help our neighbors community and our loved ones.
Speaker 1 00:03:02 And one of the things I was very struck by was from my work colleague carton, white cough. She has recently launched a podcast called freewheeling with carton. It's actually freewheeling with carton of milk because that is her Instagram handle, but she is a wheelchair warrior. She is a bad-ass at life, a huge advocate for people with physical and unseen disabilities and accessibility worldwide, and is probably one of the most optimistic and interesting people I have ever met. And we got to sit down before we were all in quarantine and talk about what life is really like from a wheelchair and some fascinating stories I would have never imagined. And we talked about what accessibility means. And when I listened to one of her episodes, she talked about how she would be impacted if we were to go into full-blown lockdown and it was mind blowing, and I've been so excited to share this particular episode with you.
Speaker 1 00:04:06 And before we get into my chat, I hope that you will subscribe to the bright this way podcast. Like right now I'll wait. And while you're there, leave a five-star rating and review, it really helps people find me and helps me shape future episodes. Based on your feedback. Also go to Alison hair.com and sign up for my daily blog called sticky notes. Every morning, you'll get a short, thoughtful note of an area to focus on in something fun to help you start your day. Okay. Let's get to my chat with carton white cough. Yeah. So we are here today with carton. Why cough? I'm excited. I'm so excited to have you here. And it's funny because carton cart. So I work at Salesforce carton and I both work at Salesforce. And on the first day, carton was one of the ambassadors for the new hires.
Speaker 1 00:05:02 So I got to know her a little bit and carton is in a wheelchair. And of course you didn't mention what was happening or not. What was happening. First of all, I want to tell you, I'm probably going to say stuff that sounds insensitive and it is not, it is not my intention to do it, but please, um, I'm hopeful not to be offensive. I'd love to learn more about to help out. Yeah. Thank you, terminology. Yeah. So you are in a wheelchair. And I remember after day one, I immediately went home and started Googling you. And I am like crying at a, how much you have done and what kind of an advocate you are in the world of accessibility and people living with disabilities. And you're so young. You're 26. Is that right? Yeah. I turned 27 at the end of March. Amazing happy birthday, happy birthday. And I just was blown away with who you are in the world and what you've been doing. And I, uh, you've just recently launched a podcast called,
Speaker 2 00:06:05 Called freewill in with Cardinal mill freewheeling. Yeah. Courtesy of Alison press play podcast. Yeah, I did. I did.
Speaker 1 00:06:15 I think you have a, you just released your first episode and it's already gotten a huge feedback. And your first episode was with your mother, which I thought was such an interesting perspective and it was so moving. And I'm curious, so what, so you have F F S H D. Yes. What does that stand for? So
Speaker 2 00:06:33 A form of muscular dystrophy and it's called F S H D. That's the acronym. So it's, <inaudible> humoral muscular dystrophy. What does that mean? It's a tongue twister. I know. So Fazio, meaning the face scapula, meaning the scapula region and then humeral, meaning the humorous muscles in the arms. So this particular disease starts in those areas. So that's where the initial symptoms are, but it is a full blown muscular dystrophy where it does affect all skeletal muscle in the body. So it ha it started out in my face and my shoulders and in my arms. And then it says slowly progressed down into the rest of my body, like my core and my legs and due to the progression. I now use a wheelchair full time. Wow.
Speaker 1 00:07:20 And when did you first start experiencing signs or seeing signs of it?
Speaker 2 00:07:25 So my mom and dad started seeing signs when I was about four and were things like she would come in to bed to kiss me goodnight, and my eyes would be fully closed. And so what she says on my episode is like, yeah, it's really creepy. You know, thinking that your child is awake, but she's not. And she's like passed out. The other thing where I was like blowing out birthday candles and whistling. Um, the other thing was doing a setup for the presidential leadership fitness program. Those were some of the things that I couldn't do. And it was just very bizarre because as a mother, I'm looking at your child and thinking she comes from a line of physically Finn and fit individuals and her there's nothing wrong with her brother. She seems to be normal, but she can't do a few of these things. And, you know, maybe that's just what it is. But I think she had those spidey senses that was like either something wrong here. And so we went from doctor to doctor for about four or five years, and then we finally got all the way up to Rochester, New York. And that's where I was diagnosed, like immediately when I walked into the physician's office. So you went all
Speaker 1 00:08:45 The way to New York or did you, you grew up here in Georgia.
Speaker 2 00:08:47 Yeah. I grew up here in Georgia and, um, we started out at Emory. There just weren't any doctors that much about muscular dystrophy. This was back in the early nineties. So muscular dystrophy really was barely in the world of diseases. So it was very new to a lot of doctors. My pediatrician didn't even really know what it was either. And she told us to then go up to Rochester, New York just to get an official diagnosis and confirmation because that's where the clinician was, who was specializing in FSHD. And so when we went up there, that's when they were like, yes, you do have it. And then we had blood tests for all of our family members. For me, I'm a spontaneous mutation, which means normally this would be genetic. So my parents would have passed it along to me, but they don't have it and they're not carriers for it. So I'm a special snowflake and there's no cure for it. Is that right? Apparently there's not any cure for it. So, but that's what we're hopeful for. We hope to have a cure by it by 2025.
Speaker 1 00:09:58 Wow. Wouldn't that be amazing?
Speaker 2 00:10:00 Yeah. It's incredible.
Speaker 1 00:10:02 Picture yourself walking. Like, do you, do you have visions of like, I'm going to be able to walk again, I'm going to be able to play sports or do whatever you want to do maybe or do you have to manage your own expectations?
Speaker 2 00:10:18 Yeah, I think managing my own expectations. I don't think that, you know, immediately when I started taking the pill for a cure, I'm not immediately going to magically start walking again. It, the purpose of this, of the trials that are happening right now is to stop the progression, but it doesn't actually restore muscle. So that's the second phase of it. So, but that's the big thing is to stop the progression from continuing to happen. But I think I could see myself, you know, walking and maybe running in 10 or 15 years. And that's a little crazy. You did that seven days. It was like coming full circle, you know, going as a child and being able to play sports and running and walking, and then slowly starting to lose muscle function for walking and running and climbing upstairs. And that became more and more challenging for me.
Speaker 2 00:11:08 And then by college, it really got a struggle. I started using leg braces. I had a concussion, I was tripping and falling all the time. It was very dangerous. And so from there, when I graduated college, I started using a scooter and then just a full-time wheelchair just a few years later. So, I mean, for me, I've kind of experienced it all. And as I am right now, I'm happy using a wheelchair because I can go really fast. And I think I also am able to break down barriers for people with disabilities because of the attitude that I have. And I think that's one of the biggest things is the worst. The only disability that you really have is a bad attitude. And so if I can transform minds and perceptions of what it's like to use a wheelchair every day, I can hope, you know, just build a little bit more empathy and build that community of inclusive.
Speaker 1 00:12:09 How many people are diagnosed with FSHD? Like what is the percentage wise or is it in the U S
Speaker 2 00:12:16 Changes every year? Just because of the penetration. And also there's just a huge population of undiagnosed. So I think it's like one in 750,000 people have it. So it's yeah.
Speaker 1 00:12:31 Are a special snowflake.
Speaker 2 00:12:34 There are a lot of people that are misdiagnosed and also many people that have it, but haven't been diagnosed in the registry where we keep account of that they are diagnosed.
Speaker 1 00:12:47 We've got some really interesting things that you've done with this disease, the right word. Yeah. You can call it a disease. Yeah. What is it? It's um,
Speaker 2 00:12:56 I guess, yeah, it's a disease. It's a progressive disease.
Speaker 1 00:12:59 Okay. I'd told you, I'd probably be completely insensitive. I don't even know. And um, so I think what you've done is you've done some pretty miraculous things. And in the name of advocacy, in the name of having awareness out there and your family or friends have rallied around you and your brother, you have a brother and his sister and your brother and your family have piggybacked you across the Appalachian mountains. Is that right? How many miles was, it was like Georgia to South Carolina or North Carolina or something. Yeah.
Speaker 2 00:13:29 Yeah. We did 82 miles back in late 2016. And the, where that started was my brother was, was, I don't know, back in 2014, I think. And my brother had watched a YouTube video about Tony, the fridge where this guy climbs mountains and does five Ks with a giant refrigerator on his back as if he were taking a stand again, or he is taking a stand against cancer because cancer is like this big, uncomfortable, giant beast that you can't get rid of. And that's where the piggyback adventures idea came about. And we were sitting around the dinner table, he showed me the YouTube video. And he's like, you know, why can't we do a Spartan race at the time, mud runs were really big back in 2014. And he was like, let's do a Spartan race and I can piggyback you. And we can go through the obstacles together.
Speaker 2 00:14:26 And the Spartan race is really great because people want to see you succeed and want to see you finish. So it's such a team building mud run, which is one that we really liked. And so we did it, that was three and a half, four miles. And we had no idea what we were getting ourselves into. It was insane and we did it and we succeeded. And then we did again the next year. And at the time my brother then was on American Ninja warrior and used my story as his platform for it. So that was a really cool experience. And from the American Ninja warrior, a college buddy of mine who owns an outdoor adventure company called Vestigo, um, his name is Marshall and he saw our Ninja warrior video and was like, carton. What is this piggyback adventure thing that you're doing? And can we do something even bigger and better?
Speaker 2 00:15:22 Why don't we do the whole Appalachian trail? Oh my God. And we looked at ourselves and was like, okay, Marshall, I think you're a little crazy. I mean, we've only done three and a half, four miles on piggyback and he's like, let's do the whole entire Appalachian trail. So we ended up only w well, we scaled it back because just because of technicality and we did the whole Georgia Appalachian trail over nine days, it was a total of 82 miles. And we took a stand against FSHD and muscular dystrophy. And it was one of the most incredible experiences I've ever had in my life because we posted about it just on our website and on Facebook groups. And we told people, Hey, meet us at the start of the trail, head at 9:00 AM. And then people just randomly showed up. They heard our story through the newspaper, on the Facebook website, through their mothers, fathers, daughters, dog, like who knows. And it was just so incredible. I've made the most incredible friends and lifelong people that you'll ever forever be connected to, regardless of whether or not you stay in touch with them every day. It's you shared that mazing experience together. And now you
Speaker 1 00:16:36 Have revived, the piggyback have ventures to go even more insane that you are planning to get piggybacked up Kilimanjaro in Africa. So
Speaker 2 00:16:47 We are a little crazy. And the momentum kind of just faded a little bit, just because of timing. You know, everyone was in a different phase in their life and figuring out what's next. And we have now revived back piggyback adventures and with, through Marshall's help as well. And the whole team of crazy outdoor adventures, we will be scaling mountain Kilimanjaro by the end of September, early October, and then even crazier. I hope to be para glided off the top of it.
Speaker 1 00:17:19 Do you know what build your life resume is no. Oh my God, you are so, so prime for this. So build your life resume. If you know, Sarah Blakely of Spanx, her husband is Jesse Itzler and Jesse Itzler is a ultra marathon runner, and he is a, uh, serial entrepreneur. And he has this concept in this program called build your life resume. And it basically is stretching your body, mind, soul to your limits, and that your life resume is, is just as important as your work resume and that the more you stretch, the better work gets, and they do all kinds of challenges like this. So I would encourage you to join this group, because I think that the amount of support you would get for people who think like these crazy ideas, like I'm in the group, I don't, my brain does not process like that, but I appreciate those people that do. And they're there just like that, but everything you do kind of reminds me of that too. And I'm wondering, so when you're getting piggybacked, how do you go to the bathroom? Do you just pay down your brother's back or something? It's a good thing. They like you, I mean, they can easily drop you. Um, my brothers would drop,
Speaker 2 00:18:30 Uh, no, I do not be in mind pads. We try to avoid that at all cost. So we got inventive when we were doing the Spartan races, because that was the thing we were out on the course for four hours. Like these were really long and that's a long time to not use the restroom, especially when you're under a lot of endurance. And so what we ended up doing is taking a toilet seat thing.
Speaker 1 00:19:00 Like it's like a portable adapter that you put
Speaker 2 00:19:02 Over the toilet seat that you see in like old people's homes where it just has, or it's, it's basically like a bedside bathroom pen, kind of like a bed pan, but in its own little chair. And we took the little pan out and literally it's just a four legged stool that has a hole in the middle. And so it's great because it's stable. And it allows me to, did I just use the restroom right from their unbelief, but it's also is great because it's provides just a seat, you know, when we're transferring or when we want to take a rest, they can just unfold the little toilet seat and then put me on it and I'm happy to rest on it because it provides stable ground. What we found at the Appalachian trail is hitting me down on the ground or on tree stumps. It's very uncomfortable and I don't have the stability to stay on it. Um, just because it's not always flat and smooth. So this provides a great alternative and it was something that we already had in our house. So just get
Speaker 1 00:20:04 You guys are awesome. So what is, does it feel like your legs are in a wheelchair, your arms, you know, you have to kind of labor to move them. Do they feel pain or do you feel, do they feel numb or do you not feel them, are these insensitive?
Speaker 2 00:20:19 Are you talking about when I'm piggybacking or just in general? Yeah, so I have full sensation. I don't have, I'm not paralyzed and I, it's not like I go numb or anything. I don't have any tingling sensation, which is great because it's not neurological. Um, it's in the skeletal muscle. So, uh, for me, I don't have any tingling sensation. Everyone's different. I have seen some reports of people going numb or having tingling sensations, um, that could be due to other causes. Um, I don't think it's typical of muscular dystrophy in of itself, but I do have full function. I'm just very weak. Yeah. So movement is very challenging just because I don't have the strength to do that.
Speaker 1 00:21:02 So how do you get dressed and move around with your day? Like how do you eat and all of those things, is it uncomfortable or does it get progressively worse or what makes things easier and more palatable
Speaker 2 00:21:14 For you? So over time it is adapting to holding your arms up. So for me, I'll, I'll hold my arm up when I'm eating with my other arm. And it kind of gives me leverage to push my forearm up to my mouth, or when I'm getting dressed, it's relying on sides of tables and grab bars. And I usually get dressed on the toilet seat just because it is a very stable position. And I also have a grab bar next to me, so I can easily just bend over and then pull. I mean, for me, I don't have the ability to raise my arms and hold them above my head. Um, I just don't have that full range of motion anymore. And so for me, what I do is I just leaned down and let gravity and, you know, have the clothes come off of me that way. So, I mean, just like any other person gets stressed, I just don't have the ability to stand. It's a lot of shimmying around to get the hands up, but, um, yeah, you kind of just figure it out.
Speaker 1 00:22:20 You're so positive about this and listening to your episode with your mom, I can see where you get it from. She seems like a woman, that's got a lot of chutzpah and a lot of fights, you know, like she, yeah, she, she seemed amazing. And I imagine that losing function as this progressively gets worse, had to have been there have, has to, or had to have been some type of grieving that went along with this of not having the same experiences as maybe eight more able-bodied people. How did you maintain a positive thing? And is it sometimes where you're just like, fuck it up best? We all have our days,
Speaker 2 00:22:56 Days, right. I think one of the biggest things for me was the day I stopped being able to run cause I loved running. And that happened when I was entering high school, I would come home every day and I would run three or four miles after class just to get my brain refreshed and recharged and then come home and do my homework. And when I entered high school, um, I just remember one day going out, running around my usual route and I just couldn't propel my legs forward in a way any longer. And I literally just collapsed on the sidewalk. And I remember just being in that cul-de-sac and just crying my eyes out and I was totally alone, no one around me. It was just me in broad daylight. And that was that moment when I realized, you know, this was something that was going to affect me long-term and I had the ability to either stop and think about it and determine where my life was going to go. And I can either be sad about it or I can rely on the doors that will continue to open up for me. And that's the attitude that I've always taken and also have gotten a lot of that support and that direction from my mom, because she's that type of person that, you know, when a door closes, three other doors are always going to open.
Speaker 1 00:24:13 And I feel like, um, we're in an age now where it's so much easier to connect with a community of people that are in similar situations that if you had this diagnosis 20 years ago, it probably would have been a lot worse in terms of isolation or being able to, to find that what is the network of support look like for you? Do you feel very supported in your missions?
Speaker 2 00:24:37 I would say I feel extremely supported in my missions. I have a huge community of the muscular dystrophy community on a lot of it on Facebook. Um, a lot of it in person as well, and then just the disability community in general is very supportive. And because they understand what it's like to overcome struggles and to overcome challenges. And it's also a place I usually don't do this. Um, but a lot of people will vent on those Facebook groups and they're like, man, my day just absolutely sucked. And I never really do that kind of stuff. I've never really taken a bad attitude about it. There's been, you know, a night or two where I think I've just been sad and I've like cried myself to sleep, but very rarely do I have those because I know I'm an incredible person and I'm doing wonderful things and I continue to just be the change that I want to see in the world every day. And that's all that I can do. So focusing on what I can't do is just a snowball effect into depression.
Speaker 1 00:25:40 You're just not built that way. It seems. I know, I haven't been, I'm wondering about you're involved with the city of Atlanta. You have made accessibility more, you have made huge changes in your Alma mater, UGA in terms of accessibility there. And you're a global advocate for it. It's got to feel pretty amazing when people start to get it. And when they fix the sidewalks, when they fix things, you know, like when you're bringing awareness to it. So we work at Salesforce, they have an, they have, um, an internal group. What is it called ability for us? What do they call the groups?
Speaker 2 00:26:19 Yeah. So I'm part of a quality resource group and it's,
Speaker 1 00:26:24 And you've done really interesting. I don't know what it is, but like showcase is the only word that's coming to my mind, but you kind of allow people to sit in wheelchairs and see, you know, the height of a counter and how it's really hard for people that are in a wheelchair to be able kind of navigate around it. And what it's like for you. What do you know that you wish other people could know whether it's able-bodied people or otherwise?
Speaker 0 00:26:52 So I did one of those day in the life challenges essentially is what you're describing, where
Speaker 1 00:26:57 I thank you for words, because apparently they were out of my mouth.
Speaker 0 00:27:01 So this day in the life challenge basically was I brought in a few extra of my spares scooter wheelchairs that I have in my house. I have three of them just like how you would have several cars for me. I have to have multiple wheelchairs because they're battery operated. And you know, the battery dies after a certain amount of mileage. And you know, when I want to go out and be with friends, I need to be able to continue to go on with my day. So usually transfer into another one. So that's why I have a few. So I brought those in to Salesforce and created an experience of what it is like in terms of design and real estate. I didn't, I kind of go back and forth about these day in the life challenges. You're never going to know what it is like to have a progressive disease.
Speaker 0 00:27:49 You never gonna figure that out, what it's like to have muscular wasting and what that's like. And you're never gonna know what it's like to be fully OCD or having anxiety attacks. But I think it is there to these experiences that I try to recreate are there to help understand the importance of inclusive design and inclusive culture and community. Because if you take an abled body person and you have them use a wheelchair, you will then understand why pushed open doors are so important. Why grab bars are very important for specific type of people with disabilities. Why reachability is important? Why I'm putting things on lower shelves are important. So the importance of having someone who's able to body use a wheelchair to experience reachability inclusive design, why it's important to have pushed open doors, why it's important to have a large bathroom and the importance of the space inside of a wheelchair bathroom and wheelchair accessible bathroom.
Speaker 0 00:28:58 The space is not there to change your clothes or bring in all of your luggage and, you know, have a group rave party inside of it. It is there for a reason it's to allow the turning radius so that I can fully swivel around in that bathroom. And so with that, I, yeah, I would say it was probably one of the most, I would say it was one of the best events that people I got feedback from because people were like, wow, I had no idea why a bathroom was that large. I had no idea the importance of a push to open door. You make push, you make opening up doors, look so easy. You. And so all of these other things, and I think if we can continue to build awareness through these experiences, then we can build a better community for all.
Speaker 1 00:29:54 Tell me about the social aspect of this. Like I think there, there are people that I want to use the example of on day one at Salesforce. So you came in and you were super welcoming and of course I went home and Googled you and figured out what the condition was. And, you know, I wonder, does it serve you to tell people off the bat, do you have to tell people off the bat, or is it something where it's nobody's business, it's your own deal and you can feel, however you feel, why do you have to go out of your way to make other people feel comfortable, but at the same time, you know, the awareness side of things. So what does that look like for you? I get that
Speaker 0 00:30:37 Question a lot, actually. It's usually when I'm at the train station, just kind of waiting for the train. People will come up to me and all the time, usually the first thing is, they'll say, wow, you have such a really cool wheelchair because I have a spacious looking wheelchair and it is pretty cool. Then the second question that always comes out of their mouth is so what happened? And I guess I kind of go back and forth the, between answering that question and it kind of just depends on the mood that I'm in, I guess. Yeah. Usually I'll say, and that's a moment of time when you have the opportunity to either get mad or, and if you're doing that, you are then shutting down. Someone's curiosity. Granted, not everyone needs to know all your personal business, but people want to know able body. People want to know why people look different.
Speaker 0 00:31:28 They just do. They're naturally curious because that is not something that they're used to every day. And this is something that I've learned. And so from there, I usually will just say, I have a progressive disease and it is slowly manifests into my muscles. And now I use a wheelchair now and they'll usually ask, they'll continue to ask questions of like, so you're paralyzed. Nope. Not paralyzed. And they'll, sometimes some of them will get pretty aggressive and they'll continue to ask questions. And then I'm just like, okay, thank you. That's your problem. Yeah, yeah, yeah. But I think it's allowing someone's curiosity to thrive and being mindful of that. And it also is just a platform to spread more awareness.
Speaker 1 00:32:15 What are some appropriate ways that are respectful to ask her to build awareness? So if you're talking about
Speaker 0 00:32:24 Just asking what's wrong with me, sometimes I don't even think it's necessary to ask, you know, why, why do you need to know why I'm in a wheelchair? Just I use a wheelchair. That's all. I mean, it, I guess it depends. If you're in certain situations, people are more naturally inclined to get to know you, but random strangers coming up to me and is like, what happened to you?
Speaker 1 00:32:48 I'm like you realize that is their problem. Yeah. I'm like, okay, why are you coming at me like that? And yeah, but I think
Speaker 0 00:32:57 Awareness really starts with talking about it on podcasts, on social media. Um, it also is when you see an entrance that isn't accessible talking with management, when you don't see, I don't know. It just could be when you don't see a push to open door, asking management to invest in it, if you don't see a wheelchair accessible bathroom asking why raising awareness. And I think when we all become allies of each other, we can continue to knock down these barriers because the world is a very inaccessible place. And because we designed it that way. And so now in disability community were doing a more reactive approach of how do we get the world to being more accessible?
Speaker 1 00:33:47 Well, I think there's a lot more focus on that on diversity on inclusivity. And I think what's so fascinating is you started this podcast about accessibility and yes, there's certainly a lot of podcasts about disability, but not about accessibility. And I thought that was amazing that you kind of found this pocket of how can I educate people and share these incredible stories of people that are knocking down doors of where, you know, they felt like there might've been limits before.
Speaker 0 00:34:22 Exactly. And that's the purpose of it because so many people are curious of what happened to you or why didn't you show up to work for three weeks, whatever the case may be. And there are so many invisible disabilities out there. And I have many friends that have invisible disabilities and
Speaker 1 00:34:42 You say invisible disabilities. You mean like anxiety disorders, that kind of thing.
Speaker 0 00:34:47 Yeah. Mental health issues. Yeah. It could be OCD, anxiety, depression, eating disorders. If you have anything with eye related issues, sometimes those are invisible, chronic pain, chronic fatigue syndrome.
Speaker 1 00:35:01 It's like all of America, by the way, honestly,
Speaker 0 00:35:04 A lot, um, could be osteoarthritis, could be arthritis, could be other just degenerative, neurological, tingling, numbing, all these things that you can't see with the naked eye and not every disability is a wheelchair. And so bringing awareness to the different disabilities that are out there, obviously we're not going to be able to cover every single one in the world. I don't think that's possible, but I think we can group them and pretty similar categories and just realize that we all have things that we're going and you may not be able to see it with the naked eye, but what we can do is bring awareness to it. And maybe people will remember that one podcast that they saw on Spotify or they heard and, um, was like, yeah, now I know how to understand that type of
Speaker 1 00:35:55 Disability. I think adding that color in that context makes a huge difference that I don't know if I would know as much as I do without working with you and being able to talk to you and all of that. What about dating? Do you date,
Speaker 0 00:36:10 Date a little bit, but I think it is challenging having a disability, um, especially the wheelchair, because that's the first thing everyone sees. Um, and it's kind of having to break down that no, I'm way more than just a wheelchair and I can actually run over you. So
Speaker 1 00:36:27 Be careful, um,
Speaker 0 00:36:29 Dating apps. I've just kinda given up on just because again, it's all very superficial. I'm much more prefer people meeting people in person. Yeah. So fellows I'm single
Speaker 1 00:36:43 And she's hot too. Thank you. You're beautiful.
Speaker 0 00:36:48 I do want to get back to the advocacy because it's something that I'm really passionate about and where it all started was actually starting here in Salesforce and talking with my local government official person here at Salesforce and saying, you know, what can I do to raise my voice, to actually create change in the world? And there's three topics that have really been pressing for me. And the first one's transit equity and providing wheelchair accessible transit and ensuring that everything surrounding that is,
Speaker 1 00:37:21 Is that not standard? It should be, but is it like standard in certain cities or is it it's not standard across it's in
Speaker 0 00:37:30 A lot of major cities around the world in the United States, it is required federally required by ADA to have transit equity, not every single form of mass transportation that the government provides necessarily has to be it. So like, for example, if you go to Chicago, you'll see how the train platform and the train are different Heights. And so maybe that station is an accessible, or if you go to New York city, not every subway station is accessible, but the alternative that they provided is their buses. So their buses are fully wheelchair accessible. They have a ramp that,
Speaker 1 00:38:08 Is that a good thing? Or should it all be,
Speaker 0 00:38:11 I mean, it would be amazing if everything was wheelchair accessible for everyone because you know, why am I limited to certain stations? So I've got places to go. I've got people to see. That's what I was thinking well to conquer. Yeah.
Speaker 1 00:38:24 Well it takes you a lot longer to get around certain things too. Yeah, it does. Um, especially because
Speaker 0 00:38:30 Elevators here in Atlanta are down a lot and it's something I'm looking into right now. So when the elevators are down, it means that I then have to backtrack and reroute. And this I've been late to a lot of meetings at Capitol. Um, just because of the wheelchair or just because of the elevators were down and having to cross tracks and coming back and you know, that's 20, 30 minutes sometimes. So that's transit equity. Oh, in addition, bus stops, bus stops the area around them. At least in the city of Atlanta are owned by the city of Atlanta. They're not owned by our Marta as we call it. So our train and bus. And so a lot of those bus stops are inaccessible for wheelchairs. The ground is crumbled with sidewalk. Um, it's right up against a 45 mile per hour street or the width isn't wide enough for a wheelchair to board. So it can be very dangerous. So we're working to audit all the bus stops over the next six months to see where they're at. Unbelievable. The other category is just accessibility into places. So a lot of places here in Atlanta are not accessible. I can't go into Edgewood pizza. I can't go into the miracle bar, the holiday Christmas bar in Inman park or Virginia.
Speaker 1 00:39:54 I was wondering about that too. Cause they're historical buildings. So they don't necessarily have to be wheelchair accessible because they're protected under that. Right.
Speaker 0 00:40:02 Exactly. And that's the battle that I continue to face. And that's the one that I faced at the university of Georgia with the arch making that accessible. So they wouldn't put, or they decided they weren't going to put a full-blown permanent ramp or move the arch back because it would affect the historical integrity. But they would provide a platform, a temporary platform at the day of graduation for both summer and fall graduations. So that is, yeah, just in terms of accessibility, getting into places. But once you're inside a place, what is the interior like if you're low vision, is it dark? If you have sensory sensitivities, what is it like? Are there strobing lights? Are there weird colored lights? If you are hurt or have hearing sensitivities, what is it like in terms of sound? Is the sound too loud? Is the music too loud? Is the background noise too much for you to handle can be very triggering for some people. And then it's, for me, it's the bathroom and the bar. Cause I like to go to the bar and just hang out. A lot of bars in Atlanta are not wheelchair accessible. Like I can't just roll up to a bar and sit at the bar. Right.
Speaker 1 00:41:17 I couldn't even see you. Yeah. So yeah, it kind of,
Speaker 0 00:41:20 So working to make bars accessible, to have a seat at the table,
Speaker 1 00:41:25 So you have traveled across the world and it's really inter you're fascinating to follow anyway, but even cartons adventures that you post a lot on Instagram stories and Facebook about, I don't know if they're kind of a shame on you kind of thing, but here's what I noticed and here's what would be better, but you've traveled to all of these amazing cities across the world to really kind of test out their accessibility. Are there any cities that I have a right
Speaker 0 00:41:53 Or close to right. Or that are good. Um,
Speaker 1 00:41:57 Any cities that would be that are good model, I would say no city that I think
Speaker 0 00:42:03 I've been to has it all right. And I don't, I'm not sure if he could ever be all right. Maybe that's the dream. And I hope to have every city be like that and move closer to it. Right? Yeah. Some cities do really well in mass transportation. Some cities do really great on sidewalks. Some cities like for example, San Francisco have laws in place where every entrance has to be accessible. So it really just depends on where you're at and where you're going. It takes a little bit of planning and researching. Thankfully on the internet, you have so many resources available to you. And most people have been to these major cities and can provide some sort of expertise or shine, a light on the accessibility factor through the lens that you're looking through. Right? So it depends on the type of disability and what you have and what services that you need to, to thrive. And for me, I looked through the lens of a wheelchair. So that's what I looked through.
Speaker 1 00:43:05 The things about your podcast is your goals is to advocate or at least empower others to advocate for their own needs and give them a platform, give them ways to make a difference. And I think that's a really powerful thing. And I'm curious to see, and I'm sure through your social media and through your, through the groups that you're part of that it's become, there's momentum. That's built in that too. You know, what kind of impact are you hoping to have? How can people contribute to your life?
Speaker 0 00:43:37 The best thing that anyone can do is continue to just share the message and right awareness. Because as we continue to write down these barriers, that's how we can feel closer together as a whole world. And it's easy to feel so separated from everyone. And we all have our journeys that we're going through. And it's important to shed light on that because we are all going through struggles, whether or not it's something that was temporary or something that's upcoming or something that you live with. We're all humans at the end of the day, right? Where do you feel?
Speaker 1 00:44:13 I feel the most included. Where do you feel the most at home?
Speaker 0 00:44:17 I feel very included in my life at work. I love Salesforce. It's an incredible company. I feel so included and loved and I can share my voice and use it as a platform for change. Um, my family is so supportive of everything that I do and love them to death. I think I'm making waves in Atlanta's culture and the community to make it more accessible, to feel more inclusive. I think we have a long way to go for the city of Atlanta. And I hope that one day I can really feel included where I don't feel like I'm kind of just like on the outskirts.
Speaker 1 00:45:01 You've had a lot of national exposure USA today profiled you and then American Ninja and the piggyback adventures. What kind of feedback have you gotten from the disabled community or anyone?
Speaker 0 00:45:15 It's been a lot of sharing, personal stories. A lot of people have reached out to me and, and were like, thank you so much. I saw, you know, your, I read your magazine article or I saw you on American Ninja warrior. And my brother is in a wheelchair or my daughter has something or my aunt was diagnosed with this. And it's just been an amazing amount of opening up and people sharing their stories. And I think it's really made people realize that they can be vulnerable and that they can share and open up about their struggles with other people. And I hope that people will continue to do that because we are all walking around with armors on. But if we peel away those armor and just show up as we are, then you just are more approachable.
Speaker 1 00:46:09 I feel like you're such a light and any community. What else? Um, is there anything else you'd like to share? I love the question. What do you know that you wish other people could know?
Speaker 0 00:46:22 I would say getting involved has been one of the best things that I can do. I would say getting involved as one of the best things anyone can do. And I started out by joining several local advocacy orgs and finding your niche. That's the best thing that you can do when you're really curious about something, what I started doing. So transit has been really top of mind in the last year for me and I just, all of a sudden started following all these transit trolls on Twitter.
Speaker 1 00:46:52 You started following trends, trolls
Speaker 0 00:46:55 On Twitter.
Speaker 1 00:46:57 They are just like avid
Speaker 0 00:46:59 Transit, like advocates and crazy.
Speaker 1 00:47:04 Wait, wait, wait. So they are pro they're very pro you say trolls. So I'm thinking, are they eight holes? Or are they people that are trying to be taken down? Okay. They can be have they,
Speaker 0 00:47:16 We're just very vocal in the community in terms of making change, but they're, you know, they're playful, but sometimes they can be a little aggressive. Yeah. And so just, I started following all these people who were passionate in the transit space and then slowly started joining the Atlanta bike coalition and teaming up with all the bicyclists and becoming advocates for them. And they have now I see them on Twitter and they're like, carton, wouldn't be able to use this sidewalk. Or she wouldn't be able to ride on this bike lane because it's poor. And that's where we built allyship is when you get connected. And when you get involved and you shine your light and your experience with someone, they then take that personally and then they will make it theirs and it will just become them. And so that's the great thing about sharing experiences and stories is because we can just continue to share and grow the network.
Speaker 1 00:48:16 I think what I'm hearing too, how important it is to be vulnerable and share your story, but be positive at the same time. Yeah.
Speaker 0 00:48:23 Yeah. I totally agree about being positive. And what, the other thing that I really love doing is going to town halls at city hall and other public meetings and sharing my story. And if you listen to many people who give their two minutes at these public meetings is they're usually filled with a lot of anger or sadness. I usually come at it with, this is my experience. So an example would be I dream of a day where I can go out with friends on Friday night and be able to get back home safely to my house so that I can hail a wheelchair accessible ride, share 24 seven, wherever I wanted to go. Instead at this moment, my current experiences rolling back home alone in the dark and kind of creating the story and sharing that experience. And that's when you can build more empathy and awareness and your message will be much stronger because you're essentially just being really raw.
Speaker 0 00:49:28 And this is what it is. That is powerful. So how can people find you? People can find me at carton of milk, spell carton of milk. C a R D E N O F M I L K. Where's carton from, is it a family name? It's a family name. Yeah. Um, it's your middle name? Danielle Kurt and Danielle. That makes sense. Kind of Danielle, why cough and you can Google me. They can find me that way. Find me I'm everywhere. My website is carton of milk.com and you can see my advocacy. You can see follow me on Instagram, Twitter, Facebook, LinkedIn free-wheeling free-wheeling podcast
Speaker 1 00:50:11 Is FreeWheel in one word, two words in Israel.
Speaker 0 00:50:14 It's there's no G and it's one word F R E w H E E L I N. I had to think about
Speaker 1 00:50:22 I'll link everything in the show notes, but I can't thank you enough Carden for all that you're doing for the, for yourself, for your community, for all of our communities, you are a culture changer. Thank you. Be the change.
Speaker 3 00:50:37 Wow.
Speaker 1 00:50:37 Carton white Gough is amazing, and I hope it is open your mind to how we can support accessibility all around the world. I've linked all of our info in the show notes. So I hope you'll also listen to her podcast in with carton of milk. Please subscribe to my daily blog, sticky [email protected]
and connect with me in the show notes. And let me know your thoughts right. This way is available everywhere you listen and more streaming on Salesforce radio and on Decatur FM. I hope that you'll subscribe to my podcast, leave a five-star rating and review. It helps people really understand what the show's about, and it helps me shape future shows that will only get better with your input. Culture. Changing is really a movement, but only works when the ideas are shared. Thanks for listening. And I will see you next week.