Becky: Dwarfism, Disability:IN, Accommodations for a Little Person

Episode 10 May 03, 2020 00:48:59
Becky: Dwarfism, Disability:IN, Accommodations for a Little Person
Freewheelin with Carden
Becky: Dwarfism, Disability:IN, Accommodations for a Little Person
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Show Notes

Tune into this week's virtual episode with Becky Curran Kekula as she shares her story being a little person, growing up and advocating for the disability community. She dives into the requested accommodations in school, home, work and travel while breaking down common stigmas the world portrays upon her. Becky's positive and kind outlook on life despite all the obstacles is refreshing to hear. You can connect with Becky at http://www.beckymotivates.com/ or https://disabilityin.org/, an organization that empowers businesses to achieve disability inclusion and equality. Transcript: https://rb.gy/4enubl

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Episode Transcript

Speaker 0 00:00 A lot of times people assume that I want an ADA accessible room, but sometimes things may be higher, the thinks may be higher and the beds may be set up a little differently and I like to ask for a standard room with those steps too, but because I don't really fit in a specific box, I think a lot of people think either you need ADA accessible accommodations, whatever we have, whatever that looks like, whether or not it's accessible for all or the standard set up. And I think people assume rather than thinking outside the box that people have different requests among different lived experiences. It's not black or white and I think sometimes people think it's just Speaker 1 00:44 welcome to freebie on 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, review, subscribe and follow this podcast and text me at four, seven, eight, five, eight, one two, one five with comments and suggestions. We welcome you on our journey towards equality for all. Speaker 2 01:16 I have Becky in the house and Hey Becky have so sofa that you're here. This is actually, so you're my first virtual guests, so this is a new experience. I hope this goes well. I know it well. Thank you so much for having me. I'm excited to be here. Yeah, thank you. And so tell me a little bit about your disability. We met through the, uh, through the conference disability in through work and um, it's so great to connect to you and I'm excited to have you share your story today. So tell me about your disability and what is the proper way that people should address you as I would say that, uh, I was born with dwarfism. I am was specifically born with a condor plastic dwarfism. The condition is called achondroplasia. I am okay if someone calls me a little person a dwarf because dwarfism is my condition or they can just call me by my name. Speaker 2 02:17 Right. That's the best way. Just Becky. Exactly. Or person of short stature is fine as well. I do not prefer the term midget and the reason I bring it up is because I want people to be aware that that is a term that is not favorable when it comes to addressing people in the door for some little people. Community. Sure. Thank you for that. It's really important to educate people on what's the proper way of addressing someone's disability and like even for me, I have, I use a wheelchair. I wouldn't say I'm wheelchair bound. That usually has more of a negative connotation, so same thing. I wouldn't go around calling you a midget. That's just very negative and so we want to shine the disability and a positive light that it's a part of you, but it's not all of you. Speaker 0 03:08 Absolutely. I was doing the senior statement in high school and one of my teachers called me out because my paper was all about being a little person and she said, that's just a part of who you are. Of course it's part of your story, but you have so much more to share. And I ended up changing the tone and format of the whole paper and it definitely came out a lot stronger after that feedback that I received from her. Speaker 2 03:38 I love it. And I'm kind of want to take a dive into how your parents took it when they first knew. Is Dorf is, um, something that you can determine in utero or Speaker 0 03:51 do you know about it after? I think more recently there have been ways to detect dwarfism in utero. But when I was born back in 1984, my parents did not know until the day I was born. And the only reason they knew it was because there was a nurse in the delivery room who had seen a person with dwarfism being born before. They noticed that I had a little bit larger of a head than most babies who were born. I was having breathing difficulties because all of my organs are more compact in the body that I have and they just wanted to make sure that I was okay, my perspective of my parents, but I was taken away from them for four to six hours until the doctors and nurses could figure out what it was that was going on and that nurse was able to tell them that it was dwarfism, but it required a few extra tests and once my parents knew that I was still going to be able to make it and they could find a way to give me an independent and fulfilling life, it alleviated a lot of their stress. Speaker 0 04:58 But that took about six months until they found a specialist who was dedicated to treating patients with dwarfism, treating meaning, helping with any medical complications that may come up. He was a dedicated doctor in Baltimore, Maryland. I grew up in Boston, Massachusetts. So my parents drove to Baltimore once or twice a year and he was able to answer any of their questions. And I think a lot of it is just willing to ask questions rather than make assumptions that it's the end of the world that you're gonna enter this new life with a child who has a difference. And I think them keeping an open mind mind really set an example for the layout of my entire life. Speaker 2 05:41 Yeah. And even nowadays, so many communities are available through social media and through other ways so other parents can connect with each other based on different types of disabilities, which is such a huge support system. What Speaker 0 05:58 did you, how did your parents feel when they first got that diagnosis and what kind of did you determine that you were different? My parents took it in different ways and my mom will always say, everything was fine, you were great, you're just a baby. And we just figured out how to give you the best life possible. My dad will say it was stressful and I think my mom was also on that journey of stress, but she's a very optimistic person, which is amazing. But my dad will say that he just dug into as much research as possible. And this was before a lot of the technology and support groups existed and he was able to find the organization, little people of America, and they were able to connect him to some other families who also had children with dwarfism. And that was definitely a great resource for them as they were learning. Speaker 0 06:51 And it was really that six month meeting with that doctor. The reason they were even able to get an appointment with that doctor in Baltimore was they signed me up for a sleep study because a lot of people with dwarfism are known to have sleep apnea and they wanted to test as many people as possible. But it gave us an in to the doctor since there was a waiting list. And once they were able to have that conversation with the doctor, he had seen every range of person with dwarfism because there are 400 types of morphism, a contemplatio. The type I have is the most common and he was able to tell them that I was going to have a less, I guess painful when it came to surgeries and complications compared to other types of door FISM and that there was a lot of hope for independent life and I would say the next part of the question about me determining and coming to terms with the fact that I was a little person. Speaker 0 07:49 It wasn't until maybe like five or six and I was playing soccer with my average height peers. I grew up among my advertised peers. I really didn't get actively involved in the little people organization until my adult life, other than my parents having the group as a support group during my early years. But I just participated in sports among my average height peers and one day after soccer practice I told my dad that I didn't want to be a little person anymore because I couldn't run as fast as my friends and have this magical answer of you were born this way, you are given difference on a platter, you are meant to be here the way you are. And I never ended up asking the question again and I think there were definitely times later throughout my life that I was upset because of not being able to be on the same social level of some of my friends, especially when they started dating guys. They just thought that I would get in the way and I wasn't going to find that person and it just, there were all different social stressors where I felt excluded at times, but I don't think there were too many times where I was like, why me? Why was I born this way? I think I just tried to do what I could with what I had and that was a lot thanks to my parents for supporting me and helping me frame that mindset. Speaker 2 09:17 It's so nice to have such a supportive network to what you know, like, Hey, you're born this way. This is the cards that you're dealt with and you know, you have two paths in life. You can either take it as it is and continue to go forward or you can be really angry about it and sad. And so I love hearing that your parents have been so supportive, Speaker 0 09:38 says, okay, you can have a sad day today. It may. If I'm down in the dumps about something, Laurie, you got to get back up and just go. And that's kind of the mindset I continue to carry. Okay. I can be bummed out, especially what's going on right now in the world, but I got to figure out how to stay on track and stay positive. Speaker 2 09:59 Yeah, it was always important to be positive, especially when you're dealt with challenges and can you continue walking me through what it was like growing up in that? I guess that divide between, you know, you see all your friends surrounding you growing taller and taller and taller and you're saying relatively the same height, you know, in that social disconnect. What are ways that you got through those hard times or how did you deal with that? Mentally? Speaker 0 10:26 One of the things I always talk about is my parents worked with some other parents in the community and strategically placed one of my friends in my class from preschool to seventh grade. So I always at least had one ally in my class during that paradigm. So if there was any potential bullying that was going on, I am a little hard of hearing in my right ear. And so maybe there were times where it was going on and I couldn't hear it, but I don't have a strong memory of being actually bullied during that period of time because I felt like I had someone who was there to support me and look out for me throughout those early school years. And then I think once we kind of got over that stage, I had leg surgery when I was in seventh grade and I needed to use a wheelchair from the beginning of the school year, probably about the first term. Speaker 0 11:25 And everyone was super supportive, great environment in school. And then I also lost my ability to walk when I was in 10th grade, so I was 15 and I had to miss 29 days of school and was able to have successful spinal cord surgery, spinal cord decompression surgery. And once I was back at school, that was when a lot of my friends started liking guys and they just weren't ready for me to be around in some of those social environments. And it was tough for me. And then after we got through that 11th grade year where it was really stressful, a lot of people started coming back together, getting ready to graduate high school. We tried to spend those last months together and I am a true believer in not holding much of a grudge if I can help it. So even though I went through some dark sad times at home with my parents, like why am I not being asked to go places? Speaker 0 12:32 I felt like I wanted to just get back on track and be part of the group as we were getting ready to graduate. And then I got accepted to Providence college where I chose to go to college and one of the reasons I went there was because there was a little person in the cafeteria when I was going on a tour and I thought, okay, at least the school has seen one little person. I don't have to be best friends with this person, but at least the school has been exposed to one little person and I will feel more socially included because of that exposure. And the reason I bring that up is because 30 there only 30,000 little people in the United States. And that means that most people have not seen a little person in their everyday life. And when I got to school, I, it was freshman year, I really wanted to get involved in find, find a way to meet people before moving in, I was doing this program called urban action. Speaker 0 13:28 It was similar to habitat for humanity. Got to know a bunch of people right before we moved into school, was really excited to meet my two roommates. I was assigned to one of my roommates. She was a really good friend over the phone and I chose not to tell her I was a little person because I didn't think it mattered. But once we moved into school, she was shocked and surprised and needed to be educated because she hadn't had that previous exposure. And it was a little stressful just trying to transition into living away from home for the first time and having to kind of prove every day that I was just a human being and I wasn't gonna jump out of my bed and scare anyone like I would live my life. And then going into sophomore through senior year, I had made a really close friend who became someone who became a close friend from that urban action program. And we're still best friends to this day. And it really was just someone who is willing to wait up for me when I was walking slow and was willing to give me a chance as a friend and a human being and thankful to have that support because we've learned so much from each other over the years. And don't tolerate when people make assumptions and are ignorant because of it. And I also want people to know that I'm willing to help those people learn. They just have to be open to learn me. Speaker 2 14:59 Oh, I got goosebumps. I love that. It's so nice to have such a strong support system and even in friends. Um, all you need is just that one person that says, you know, I'm here for you. I'm willing to stuck up with you. You did mention there was something that you had to educate her on and or it was a girl, right? Yes. Speaker 0 15:20 I think that was just during the first six months it was really hard to see eye to eye and one, I think once she observed the way that I was building relationships with other people, she became more curious and wanted to figure out how to crack the nut and learn as much as she could. So I think looking back, it was definitely a learning experience, but I bring up the story often when I'm speaking because it's a real situation and I know that that happens more than in just my life and that it really starts with people are assuming because of your appearance with any type of physical difference or maybe once you open your mouth with a cognitive distance difference that you aren't able to contribute to society in the same way that they expect you to. But thing out. Huge opportunity, missed opportunity if they don't give people like us a chance because we live a life of problem solving every single day. And even in that dorm environment, there were times where it was just trying to figure out how to get out of bed and land on my two feet or go to the bathroom and hope that the toilet seats not loose while I'm climbing up. It's finding ways to do things because if someone isn't opening themselves up to you, they're not someone that I'm going to want to ask for help. Speaker 2 16:54 And just like you said, problem solving every day you look through the lens of everything is taller than you are. And for me, I look through that lens of everything is not flat rollable and accessible, right? So it's like we are so strong and mentally because we know how to overcome these challenges and these barriers and I love hearing that. Um, what are some of those practices? You said you had to educate your friend on. What are some of those things that you had to Speaker 0 17:24 talk to her about? I think a big pieces just trying to get down to the bottom of where, where the fear comes from and a lot of the fear that comes up when it comes to socializing and addressing the little people community is because historically in the media we have been portrayed as mythical creatures and I think because someone has not seen someone like me in their everyday life, they continue to think that that's the only way we are and the only way we can be, and I think it's trying to get someone to open up, asked me, put it on the table, ask me whatever you want to ask me and we'll get a lot more accomplished than you just assuming or closing off because you're afraid. Speaker 2 18:14 Sure. So it's more so that emotional disconnect as people not accepting you as you versus you know, other accommodations and things. It's really getting past that initial fear. I think there's also that assumption of, Oh this is going to be such a hard year because I'm going to have to spend so much time helping this person. But it's like, no. And thinking about how little people are portrayed in the media. What are your thoughts on that? I've seen a reality TV show on little people. You probably have seen it too. Um, it was like sneaky. It was like a Snuffy little person and I was like, I'm not sure if that like accurately describes who they are. No. So people always ask Speaker 0 19:05 me like, what do you think of Peter Dinklage? And I think he's a super talented actor and he definitely pursued a career as an actor and worked really hard to be an actor and I respect all of the roles that he has taken because there are definitely roles where he was offered in the past that were negative and he tried very hard to steer away from that. And I know that a lot of actors may say it's a job and it's really, it's who you can play rather than who you are. But it's, it affects us. Every piece of media content that's out there affects us, whether it's a negative or a positive light. I would say that some of the earlier TLC reality shows have been educational. Some went on a little too long and could have been cut off maybe sooner, but the lifetime shows that you're talking about. Speaker 0 20:02 I think people of course want to have a job and want to do what they want to do and there's nothing that we can do to stop them because their upbringing could have been different than mine and that's maybe why they had agreed to such roles. But the problem is there are so many shows out there, real Housewives, a lot of those reality shows that exist in society, but people can leave it at the door to say, that's trashy TV. We're leaving it at the door. But when people are watching any show that has little people, they're assuming that we're all like that person no matter what, whatever they saw the most recently when I was living in New York city, every day walking down the street, people try to tell me that I'm one of those people on those shows and I tell them I'm not on TV and I'm okay with not being on TV and they tell me that I'm alive or because I must be one of those people and I'm just hiding from them, but it really, I really just want to have an interaction with the human being starting from ground zero without that basis of them assuming that I'm someone who I'm not, and I think that affects a lot of the relationships that I could or could not enter into like personal friendship type relationships because if someone tells me right off the bat that I'm alone here, I'm not going to want to continue to educate them on that. Speaker 0 21:27 We're all different. We're not all sisters, we're not all twins. There are enough of us out there still where we can be our own individual human selves. And then I would say a lot of people talk about like the movie, the Wolf of wall street. One of the biggest struggles with that film is that they have the dwarf casting scene and then there's a scene later on where they talk about how it, it's something that gives little people jobs and they're proud just to have a job no matter what it is. But it really is an inhumane act that where they've even had bars around the country because the media is so powerful and it influences the themes of events throughout the country and the world. And people actually host dwarf tossing at their bars in different parts of the country. People pay $10 to show up and watch someone get tossed across the room, which is completely inhumane. And the bartenders or the owners of the bars will stick up for these people and say, you know what? It's a job for them and we take a care of them. We give them a lot of money but a lot of money in safety. There's a huge difference and it's again, I think some of these people, different upbringing than I had, but you would think that they would want better for themselves and their future and if someone really thinks they're looking out for someone and throwing them across the room, they should think again. Speaker 2 23:00 Yeah, that's definitely not something that anyone should have to go through just because you look different. Um, you get such an inhumane type of job and I'm curious to know what are ways that you help and support people with other kinds of disabilities or in the little people of America community? Speaker 0 23:21 Early on I decided that as an advocate I wanted to advocate on behalf of the entire disability community. Since there are still very few little people and I want society to understand a little bit more of the importance of advocacy. And I think we have a lot of shared experiences and under the Americans with disabilities act, a little people are covered because we do require accommodations in certain environments and there also are some little people who are wheelchair users or may be blind or have low vision or deaf or hard of hearing. But I would say that one of the biggest pieces is just giving someone a chance, putting it out there, making it known that you're willing to make an accommodation, whether it's in a social gathering or in a job setting so then someone doesn't feel as afraid to ask for something. One of my biggest pieces is step stools. Speaker 0 24:17 Always advocating for having a step stool whenever possible, especially when it comes to being in a hotel, traveling and wanting to have a step stool that I can access the bed easily, especially if I have to get up in the middle of the night and get some water or go to the bathroom. I want to try to have a step stool at the bed and at the sink in the bathroom. And a lot of times people assume that I want an ADA accessible room, but sometimes things may be higher, the sinks may be higher in the beds, may be set up a little differently. And I like to ask for a standard room with those steps too. But because I don't really fit in a specific box, I think a lot of people think either you need ADA accessible accommodations, whatever we have, whatever that looks like, whether or not it's accessible for all or the standard set up. And I think people assume rather than thinking outside the box, that people have different requests among different lived experiences. It's not black or white. And I think sometimes people think it's just one or the other. Speaker 2 25:27 Hmm. And for so essential as an example of one, a combination that you use regular, it sounds like, what are some of those other things that other people would use as regular combinations in the little people community? Speaker 0 25:42 Sometimes people may ask for a Reacher like a grabber to help maybe reach things that are higher. I would say that because of not being able to walk very long distances, people may use assistive devices such as a segway, a scooter or a wheelchair. It's really kind of up to their personal preference. I think some people use canes just to get around and so one thing that's big among people, especially with achondroplasia is spinal stenosis because we have dwarfism, a type of dwarfism. We have average size torsos, but still all of our organs and bones are more compact and the spinal column is very close and tight against the spinal cord, which may also be pinching, cause pinching, which was happening when was in 10th grade. And we continue to have to monitor to see what's happening. But that affects sometimes our ability to walk and walk far distances. Speaker 0 26:55 So I think that's a big piece. And then it's the bathroom being able to reach the sink, but making sure that a step stool isn't in the way of other people because you don't want people to trip. And then I would just say it comes up on an as needed basis. Even for the longest time when I was working in an office, currently I work remotely, but working in an office I never even really asked for a stool or I would just want to be able to make sure my desk chair could adjust to be a little bit lower. But it was more recently where people started bringing it up to me. And I think that's a thing that happens often where people don't want to be an inconvenience or a burden, so they're going to stay quiet until it absolutely becomes a problem. But I think it's important for everyone to just ask the question, is there anything I can do to help you feel more successful? Whether it's a coffee meeting, socializing or in a job setting. Speaker 2 28:00 Yeah, it's always important to ask. I mean, it just depends on the person. Like for me, I've kind of just accepted if someone starts jumping in and helping me, like I'm fine with that. Um, I've interviewed other people and they're like, no, I want to do everything myself. And some people are like just please ask me for. So I just go with that middle ground of ask. Cause you either say yes or you say no. Speaker 0 28:21 Absolutely. I like that putting it out there that you're willing to help but there have been many times or it's clear that I'm struggling to reach something and if someone immediately asked to help or grabs it, I'm totally fine with it. Speaker 2 28:34 Sure. Really curious about how design impacts your everyday life and when you're thinking about going out and about traveling, I know you travel quite a bit, right with disability in and what is it like going to those hotels as far as restaurants, um, conference centers, some of them are really spread out. How does that affect you and what are some accommodations that you wish bars and restaurants especially had? Speaker 0 29:02 Something that I didn't think of until more recently was even when it comes to having a tight layover at an airport when I'm trying to get to my next flight, I think for so long and I was like I don't need to be pushed in a wheelchair. I don't need a scooter. There are plenty of other people that need those things, I'll be fine, but it got to the point where it was a timing thing. I was not going to make my plane if I didn't put in a request for a chair and it was, I was going to San Diego for a work trip earlier this year and I had a layover in Phoenix and I looked where the Gates were on the map while I was still up the plane and I finally mentioned something to the flight attendants, so they were able to page someone down on the ground to be ready for me because I would have missed my flight and then be stuck at the airport another maybe even, and I think that was one of those moments where I started to realize, you know what, I need to ask for help because it's going to affect whether I get to my destination. Speaker 0 30:04 And also more recently when it comes to, this isn't as much traveling through flights, but handicap accessible placards are something that have become more common for the dwarfism community because people can't see us in parking lots. It's really important for us to be close, whether or not we're willing to walk that distance from a little further away. We need to look out for our safety. So I would say I try to, even while I'm boarding planes, get on with that earlier group, those people who need the extra assistance so I can get settled and there's never going to be a time where I can reach the overhead bin to be able to put in my suitcase. Right. And I like to make sure I find someone who's able to help me. There have been times where people have said, Oh, we're not allowed to do that. Speaker 0 30:59 And then luckily someone else is able to help. But then I don't really love checking a bag because when it comes to getting down to the baggage claim fast enough to get my bag, or if I'm there fast enough, trying to get it off the belt is a challenge. Same with me. It's hard for me to pull my bag off that belt so, and I do the same thing. Yeah. Yeah. Sorry, I don't check bags. So then I think so sometimes people will say, why didn't you check it? But it's a double challenge. I would say that being able to use rideshare transportation, I know there's still a lot of work to be done when it comes to accessibility, but the needs for me specifically or just being able to get in the car to take me to where I'm going, it would have been more challenging for me to accept a job that is completely remote. Speaker 0 31:58 It requires a lot of travel. If I was expected to rent a car everywhere I go, I know that some car rental places do offer hand controls, but I never learned how to use hand controls and I think it's really changed the game of being able to get from point a to point B. But one of the struggles is if I order a standard car and an SUV comes and there aren't the the step where you can climb up, it does become a challenge. Sometimes I still figure out how to do it, but it's not always easy. And then I would say once I get to the hotels, I have called ahead of time to ask for the step stool. I'll get to the hotel. They'll say, Oh, I don't know if we have one of those, we'll look into it. We'll call you in your room side, check into the room a few hours later, call back down, and I just continue to try to stay patient, but also educate along the way because maybe that person next to me is going to be a little bit more frustrated and will think to speak up, but then they may be in danger if they're using a desk chair that has wheels to try to get up in their bed. Speaker 2 33:06 Lots of things to consider from all different perspectives. Yeah. Thinking about a step, getting up into an SUV. I don't take ride share. They don't have, they don't have it in Atlanta, at least for wheelchairs, but yeah, just thinking about it through a totally different lens is always so fascinating. I love as why I love doing this podcast for an hour or whatever. I just try to imagine myself looking through someone else's lens and it's really eye opening because now I'm thinking, okay, well what are ways that Uber, Lyft and all these other ride shares could do to, you know, have a toggle for collecting. You are a little person and you need not a combination. You know, I'm just thinking of like all these different things, how we can make it easier for everyone. Um, and even in, I know Marriott, I love Marriott, Marriott hotels because they're always so great about accessibility at least on a wheelchair perspective and deaf and hard of hearing as well. Um, but I'm wondering, same thing, you know, could they have a toggle? Yeah, they have the ADA accessible roll in shower, but do they have little person, you know, have stepstool available and allow that to be a requirement that they offer. And I will say they are, Speaker 0 34:15 you're doing a lot of great research and I've been part of groups that have been giving the feedback so they can start thinking about more of a strategic universal approach versus just assisting one disability and thinking that everyone has that same disability. Speaker 2 34:35 And thinking more about design, what are some of those other pet peeves that you have? Anything else? Like what about like in bars and restaurants? Speaker 0 34:44 Well barstools are always very difficult to climb up but it's kind of funny cause especially when I'm traveling I don't want to take up the whole table that a family may want to use. So I will climb up of the bar just being one person having my dinner meal, whatever time of day it is. And I always hope that there's at least the bar at a good place on the chair in order to be able to climb up. But it's not always easy. And sometimes other people have offered to help, especially to make the chair sturdy enough. Well I'm climbing but it is a climb wherever I go, it's a climb. I would say that I probably would prefer to sit, what are some bars and restaurants do have that wheelchair seating area where it's a little bit lower and you could just sit in a shorter trailer. Speaker 0 35:37 So that would definitely be be preferred. It's really just making sure I have access. But I would say another thing that happens in bars and restaurants sometimes is there are people who may not be as educated or aware and they may act fearful. And especially if maybe I'm with someone who is someone who doesn't have a disability, they may look at that person and ask them what I want or just give them a lot more of the favorable interaction than talking to me straight on. And that's where this cup behaves. And sometimes even if I'm with someone who's shorter than me, they'll look at me as the trusted source. And even if that shorter person's older, like why can't you just ask that person what they want? Speaker 2 36:26 Yeah, we see that a lot in the caregiver community as well. Um, when there's a personal care assistant with someone who does need a little bit extra assistance to do daily activities, people assume that the person using a wheelchair is like totally enabled to, is nonverbal and like can't think. And so they direct the question to the personal care assistant and it's like, what? No, I'm a real person. Like I may have some physical problems, you know, getting up, getting dressed, but I have full functionality in my brain. I can think, I can talk, I can do all the things. So yeah, it's always important to just address the person. Right. On. Same thing with an interpreter. Someone who is hard of hearing or or stuff, you know, you don't talk to the interpreter or you talk directly to the person who is deaf. Yeah. So just thinking about how we all communicate with each other. Speaker 0 37:23 Recently we were somewhat somewhere and uh, we found out that there was someone who has a terrifying fear of little people who was on the same resort as us. And I was just trying to wrap my head on ways to address that because you want to know where that comes from and probably from the media or some in interaction, negative interaction or false news they received from someone in the past. And I think it's hard, as I was saying earlier, just cracking the nut. It's hard to wrap your head around that. But then also thinking of the billions of people who live in the world and do really want to spend so much time trying to change that one person when maybe you could change a larger group of people and right. But it is a reality that exists and it's crazy to think. Uh, and I would say that the reason I thought of it was because that may come up in restaurants too. If that person just doesn't want to serve me because they don't know what's going to happen, I may switch with another server. And I've definitely seen that happen. And I think what's the craziest is they don't think that I know what's going on. That assumption that like, Oh, they won't be able to know, but we're just going to make this change quick. Speaker 2 38:41 Yeah. I wonder if it's like in the disability community, I feel like it's common for us to constantly having to prove to people that we are capable of doing things. Do you find that is true as well? Speaker 0 38:55 Right. Even my parents have been told by people in the community where I grew up, they were like, how could you let her move across the country to California cause I moved to California right after college or how could you let her move to New York or, or because you let her move so far away, she must not like, you know, like we're stronger than ever. We just happen to have different interests as far as career paths and the support I needed to get to where I wanted to, especially since media plays a big part in how people like me are portrayed. I wanted to have a piece of that and trying to change that in what's going on there. So you can't do that in the Northeast than a small town when there's opportunity in LA, in New York and other places, and that's kind of where my career path took me and I went with it and I think just people assumed that my parents were going to have me at home my whole life. Speaker 2 39:57 You're going to be stuck in a cave for your entire life. When you're meeting people for the first time, what is the best way for them to interact with you? Is it getting down on a knee? Is it sitting down in a chair? Speaker 0 40:11 A question comes up often a lot of people ask the question, meaning that they're probably going to ask it anyways. When we initiate that interaction, I would say if there is an area nearby where we could both be at the same level so they're not having to hurt their knees or I'm not having a hurt my neck staring, right? Sure. But if it's one of those environments where there isn't much room to adjust, I would just say we'd want a step a little bit away from where the crowd is because we won't be able to hear each other. And then I would say in a lot of networking environments there are high top tables and those are not preferred because that just, I'll tend to gravitate towards the table and then that creates a level of exclusion if there's not a lower area to hang out or put food down. And I would say the easiest is if there are tables around or chairs offered to bring me to go sit there and we can have a conversation. But if it's in real time and there's not much we can do about it, we can just start the conversation and see how we feel. Speaker 2 41:23 Yeah, it just depends on the right time and right place and the environment that you're in and kind of thinking about conferences and movie theaters and stuff like that. Where's your preferred seating? Being in stadiums, I'm just thinking like it's so interesting. You just listen to you talk like my whole legs was just like, Oh, I think you've got this and thinking about that. Speaker 0 41:44 Well as I was saying before, since my torso is advertised, it's not too hard for me to see unless someone is like super tall sitting in front of me as far as, but I would say I would prefer seating areas versus standing and a lot of people tend to pick the standing areas because it may be a little bit cheaper, but I would prefer seating. I like closer to the front just because that allows you to see better in general. But I think it's just especially thinking about concerts, you want to pick a price level that works for you and the group of people you're going with. I may sometimes ask the question about preferred seating or accessible seating that may be available and I could go down that route, but it would probably depend on the amount of people that I'm going with because he may only be able to bring one person. Speaker 0 42:40 I did work at a talent agency for awhile and it was in the touring industry and there were a lot of music shows that I would go to if they couldn't sell out the tickets. So a lot of those open-end open venues, general admission standing were more complicated than the ones with seats. And then the big music festivals. I honestly, as much as I would have loved to go, I just avoided them because just the crowds and the fear of getting trampled and not in the right place. And I wanted to go, but I had to give up my tickets because I just, it just felt like it was going to be a nightmare because accessibility definitely wasn't thought about during those times either. Speaker 2 43:24 Yeah. I go to a lot of concerts now, um, and I've found that it's gotten a lot better in the last five years is becoming a requirement. And I love going to music festivals and that was always such a struggle for me is, well, you know, they just have these giant mosh fits out in, uh, in the middle of a soccer field. You know, you have thousands of people around you and yeah, people trample over you, they fall onto you, they try to sit on you. Um, all of these sayings and having that dedicated seating is so nice. I've noticed a lot of music festivals have them now and the stages are in pretty good prime locations. It just depends on the festival that you're going to, but a lot of um, movement forward and allowing them to attend. Speaker 0 44:13 And then movie theaters. I really liked the preferred seating they have now and a lot of theaters and I don't go a ton because of all that you can just get at home the content that's available. But I'll pick kind of in the middle and then hope that someone really tall sitting in front of me by the time I get there. Speaker 2 44:33 Well cool. What advice would you give to either your 10 year old self or your 60 year old self? Always like that Speaker 0 44:43 10 year old self got boring about what other people think and just pursue what you're passionate about and don't take no for an answer. One person's no is not. Every person's now and then I guess 60 year old self. I just want to hope that at that point that I can show pride in the fact that change has made been made as far as acceptance for people with dwarfism and people with disabilities and all people around the world. I want to make sure that there's an even playing field because people with disabilities have been left behind for so long. I don't want people to think that we want more than the average person. We just want to be on that level and be accepted and then we can show what we're capable of if given a chance. Speaker 2 45:34 Got it. Well thank you. Um, actually I do have one more question, um, about your house. What modifications or have you made any modifications in your house? I know you just do a lot. Anything else? Speaker 0 45:46 Everywhere. When I, when I was growing up, I think that would probably be the most helpful. The house that I grew up in, starting from age three, my parents built a house on a culdesac and what they did, it was a basement, first floor, second floor attic. But we didn't really use the attic, but what what they did was from the first floor to the basement, there was an extra railing. There was a lower railing that I could use in addition to the railing that was at the average height. And then we had intercoms in our house because we thought that we would want to page each other before a storm. Blew them out years later. But that was in my room. It was lower than everyone else's. Instead of knob doors in the house, we had handles, so really something that everyone could use. Speaker 0 46:38 And then some of the light switches in some of the bathrooms and my bedroom were lower. And that was really other than having stools around and a grabber to do the laundry, really nothing more than that. And then at school I just had a step stool around the toilet in the bathroom, but everyone wanted to use it. And then we did request for a lower rail for them to have available for me when I'm transferring from one floor to the next for classes. And then in high school I had an extra set of books in my classes so I wouldn't have to carry heavy books throughout the school. Speaker 2 47:15 And do you prefer like a front loader washer and dryer versus, I figured so do I. That's easier for me. My parents got the front loader washer and dryer after Speaker 0 47:25 I was old enough to do more of my own laundry, but it still had the buttons in the back so I still had to use the buttons. In an ideal world it's the front loaders with the buttons in the front as well because that works more effectively. And then I would just say an apartment. So my adult life, that's kind of what you get is what you get really hard to when you're renting, make a ton of accommodations and that's why stools come in handy everywhere I live because I can adapt to the environments. Do you have a little portable stool that you take with you? I should, but not currently. I, I guess I haven't been many expectations for people to have them for me, but it may not be a bad idea in the future to just have one of my suitcase if I can figure out a way to do it. But I have so many clothes I want to pack when I travel. Right. Got an elephant for every hour. Exactly. Speaker 1 48:27 Well, thank you so much, Becky. I hope to see you in July. Hopefully it'll still be on West cupboard, but Stacy, and thank you so much for sharing your story and just walking me through everything that you are. Thank you. Alright, bye. Feel free to text me at (470) 588-1215 I'd love to hear from you and let me know your thoughts, speak back and what you want to hear on future episodes. All right, I'll see you all next week. Bye.

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