Carly Ruhnke On The Importance Of The Little Person Community

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Jillian Curwin: Hi everyone. Welcome to Always Looking Up, the podcast for no one is overlooked and height is only a number, never a limit. Hosted by me, Jillian Curwin. Each week, I will be having a conversation about what it is like to live in a world that is not necessarily designed for you.

In this week's episode, I sat down with Carly Ruhnke. Carly is a little person with Morquio A Syndrome and founder of the Little Carly Foundation. We discussed the moment when we realized we were a little person in an average sized world, what it is like to attend an LPA National Convention, and what it means to us to be with our community, whether it is for a weekend or for a week.

Let's get into it. Hi, Carly.

Carly Ruhnke: Hey, how are you?

Jillian Curwin: I'm good. How are you?

Carly Ruhnke: I'm doing great.

Jillian Curwin: I am very much looking forward to talking with you. Thank you for taking the time. Why don't you start by telling my listeners a little bit about yourself?

Carly Ruhnke: Hi. My name is Carly Ruhnke. I'm 26 years old and I live in a small town in New Jersey.

Jillian Curwin: Awesome. And how do you define being a little person?

Carly Ruhnke: Being a little person has its challenges, but I think all you need is a step stool, a wheelchair that you're not supposed to stand on, if my doctors are listening, sorry, and a reacher, and you can get it done.

Jillian Curwin: I love that. I think we're always doing things our doctors shouldn't tell us or tell us we shouldn't do. I think that's the…

Carly Ruhnke: I'm the queen of that.

Jillian Curwin: Yeah, I think that's part and parcel with being a little person. I do want to ask, if you're comfortable with explaining, like what is your type of dwarfism?

Carly Ruhnke: So my type of dwarfism is rare. It's called Morquio Syndrome. Type A. It affects the organs and the lungs and stuff. So with my dwarfism, I stopped growing at the age of three because I had to have a spinal fusion. Otherwise I'd be like a foot taller, so I'm three foot. The biggest joke I say with my friends and I'm the dwarf of the dwarfs because I'm like all the way down there. But yeah, so I'm on weekly infusion called Vimizim to stop that stuff to get enzyme replacement therapy. Because our enzyme level is so low that we need it to, I need the enzyme from my body to stop the progression of Morquio. So a lot of people with Morquio, you'll see that they have a belly and that it's not because we like food, but although we do like food, our organs are full sized.

Jillian Curwin: Right.

Carly Ruhnke: And then, you know, like some of us have like the head with no neck looking thing. I mean, we have a neck but it's kind of like, yeah.

Jillian Curwin: I get what you're saying. I think that's a common thing with dwarfs. I mean, I was I was told that my parents were told when I was little that I will never have like a flat stomach because our organs are normal sized and they have to fit somewhere. And obviously we are of smaller stature…

Carly Ruhnke: Yeah.

Jillian Curwin: So I think that is a common trait, even among the different types of dwarfism that that's…

Carly Ruhnke: Yes, yes. And I recently discovered I have like they have like a list of things, a really long list of things with Morquio of like all the things you're going to have and I was like I'm not going to have the hernia. Like, I've never had the hernia, blah, blah, blah, guess who has a hernia and finds out 26 years later. I had emergency surgery literally like six weeks before Nationals. I'm like telling the surgeon and I'm like, "Listen, I got a wedding in two weeks and I got Nationals in six weeks, so if this is going to hold me up, we're not doing it until afterwards," because it's the first Nationals in, what, two or three years? I wasn't missing it.

Jillian Curwin: Yeah, we're going to get to Nationals because it just happened, and I want to hear all about it. I wasn't able to go, so I want all the tea. But I do have like a couple other questions for you. Are you the only little person in your family?

Carly Ruhnke: I am.

Jillian Curwin: Okay. And what was it like for you being the only little person in your family? I'm assuming in your immediate circle of friends and everything. Like, what was that experience like for you?

Carly Ruhnke: Um, well I didn't, it did take me a while to realize I was a little person. So like in kindergarten, first grade area is when I start to discover it, but for my friends and my family, my sister was really interested in it. She was always reading about it. My brother, he's the fun brother. He's the one that is always at LPA with me, he's the one that has more friends than I do at LPA. You know, there's, "Ed, Ed, Ed. Where's Ed?" They all want him at DAAA. They all want him to coach. They all want him to be the security guard. And then the one year they're like, “Oh, you're you're Ed Ruhnke's little sister.” I'm like, “No no no no no no no. This is in my world we're in, here. Lose this crap here right now.”

But my brother and sister and their friends, like they're all like accepting. My brother's friends definitely were the big brothers that I did not need. Probably caused the reason why my dating life didn't start until I was 20. Because in high school, if a guy came up to me, uh uh, nah nah nah, not happening. Nope. Except my my actual brother is not protective of me. He's protective of my friends, but not me. It's a really strange situation.

Jillian Curwin: That is so that is so interesting. And it's also like I relate a lot to that, first with the brother thing and then I want to touch on something you mentioned. Definitely my brother is younger than me, but you know, he's my taller brother. He's average height and he would go to LPA and I found that and this is me seeing it, and maybe he feels differently, like he was making friends and everything, like he was like included. And I'm like, wait a second, this is this is my world you're in.

Carly Ruhnke: Exactly.

Jillian Curwin: You're coming into my world. Wait. So I relate to that to the brothers kind of, you know?

Carly Ruhnke: I've even had my friends tell me if I don't go to Nationals, they're going to register my brother to go. I'm like what is this crap? First of all, he's not going without me. He's lost his mind.

Jillian Curwin: Right. You touched on something though, before that I want to talk about and that you said you didn't realize that you were a little person until you were you know, like you said, four or five?

Carly Ruhnke: Four, five, six areas.

Jillian Curwin: Right. And I find I, I agree, like I kind of feel the same, or I'm not saying I agree, like I felt the same way. And I think that's interesting because we are born disabled, we're born as little people, we don't have a life day or moment a day where suddenly our life changed, where we're suddenly a little person like that didn't happen. Like we, you can't become a little person. You're either born one or you're not.

And yet, though, there's still this moment. I don't think we really talk about where we do kind of realize that we're little. And I think it is around that time because all our friends are suddenly much taller than us and we're getting ready to go to school and we're realizing we need stools, we need to make sure we can open the bathroom door, we need, you know… We're doing all these things and getting I think when you're younger, it kind of feels like special treatment. But it's really just the reasonable accomodations for us to be able to be a part of the class and be with our friends.

Carly Ruhnke: Right? Like my first best friend, she tall. She's almost six foot tall right now, and at one point, us at four years old, we were the same size. And then she kept growing, and I kept looking up, and up, and up, and up, and I still gotta bend my neck all the way backwards to look at her and I'm like, Jesus, she just, she's a giant compared to me and she she blames me that she blames me now because all her friends are short and she's like, you were the root of the problem of starting off with a friend. I'm like, Hey, you like short people. It's okay. Just accept it. I guess, like there was like an incident in kindergarten where this kid called me a chicken nugget and that's where it all started, and me being my sensitive little self then went home crying to my parents and grandma. I was ready for my grandma to like call every news company in the state of New Jersey and be like, this kid's gotta be put into a juvenile detention center for calling me a chicken nugget. And my one of my friends at the time she uh she's like well if Carly's a chicken nugget, then your a Big Mac and french fries. Kid you not, a week later this kid moved, I don't know where he is, and I've told this story on many platforms and he probably, he's probably heard it and he's like, Dad, why did I do that?

Jillian Curwin: I cannot. I, I cannot right now.

Carly Ruhnke: I love chicken nuggets. Like they didn't traumatize me from eating them. But like I can I eat chicken nuggets 4 to 5 times a week cause I'm a 26 year old that eats like five year old. But...

Jillian Curwin: Yeah, I think, I also think, and it's like it kind of reflects I think that other kids, you know, our peers are realizing that we're different, that we're a little person at the same time because again, they're growing. They don't need the the accommodations that we need at school. And as, yeah, I think I was, at the same time, I think for me it was, I guess, summer going into would have been kindergarten, summer either going into kindergarten or first grade is when I had my first surgery, my first like big surgery where I had my leg straightened and I needed, and I had to get a cast and all my friends got to play on the playground. And I sat in a wheelchair all summer. And I, even though I had a cast on my leg, I didn't understand one, why I needed this cast, or like why I needed the surgery. I didn't see what my doctor saw. And like looking back, my leg was very bowed and needed to be straight, but I was five. I didn't see it. And it was still like, my friends are doing this, why, why do I have to sit here? And I think, you know, it's like it's interesting because like, we don't really talk about like coming to terms when we realize it because we're born with it with dwarfism. But I think it's an interesting thing to talk about.

Carly Ruhnke: My mom said that the one thing with me is I never questioned surgery. I never questioned why they were drawing blood or any of that or running up and down that little hallway at DuPont. You know, we all ran up and down it. If you were a Mackenzie patient, you were walking up and down that little carpet runway.

Jillian Curwin: Oh, yeah, I know.

Carly Ruhnke: Eventually after he did my hips because he was like, this was like the Morquio surgery that like worked and he was like, I was the Morquio model for that one. Still to this day he'll like, yeah her surgery over there. I'm like Stewart you better learn how to do this one because, you know, but I just did it.

The only the one surgery that bothered me was I think I was in first or second grade. My mom did it over Christmas break and my school wouldn't allow me to return with my cast on my ankles because I was wearing my brother's boxers and shorts. But they weren't skintight. They were like loose Spider-Man boxers like...

Jillian Curwin: Also like they're long enough to be pants, I'm assuming, right?

Carly Ruhnke: Yeah. They were down to like my ankles. I mean, like…

Jillian Curwin: It was like my school, It was in middle school when I was older. I had my second leg straightened and I had it done over. What was it called? Over, I think Thanksgiving break. Yeah. And then, like, I come back and my school is like, you need to be in a wheelchair and everything. I'm like, I have crutches. I can like, I was supposed to start walking while I had the I had the, it wasn't a cast on, so I was supposed to eventually start…Yeah. So I was supposed to eventually start walking and I was just like, my school's like no, and I'm like, yes.

Carly Ruhnke: I've never had a fixator, but I was always fascinated about it and there's a slight bowing in my legs, and I was like, Mackenzie, let me try all this out. And he just like, really Carly? Like, I'm fascinated about surgeries. I've always have been. Like I was like, but I want something that looks like that. He is like, but why?

Jillian Curwin: You don't. You don't.

Carly Ruhnke: I know. I've heard horror stories.

Jillian Curwin: Yeah, It wasn't a pleasant experience and I told, when I had Dr. Mackenzie on the podcast. I told him that you have to have it cleaned every day. And because it was my leg, my dad would be the one cleaning it. So I think I almost kicked my dad in the face every day for six weeks because it was just it wasn't pleasant.

Carly Ruhnke: You were not looking forward to when Dad came in with the cleaning?

Jillian Curwin: No, I was like, nope, we don't need this. But like, I needed it. But yeah.

Carly Ruhnke: It was like, “Dad, give me ice cream while you're doing that, and it'll be a better experience for all of us.”

Jillian Curwin: Exactly. Yeah. It's interesting how like the two different types of dwarfism, because I have achondroplasia, but yet some of the things that we need done are similar.

Carly Ruhnke: Yeah, it's it is interesting. There was one time at a little people conference, someone asked me if I had achon, which I thought it was the best compliment ever, but my friends were like, “That's because you have a big head.” I'm like, I'm like, “That doesn't come from Morquio. That comes from my dad.”

Jillian Curwin: I was gonna say, I think all of us kind of have big heads is like, I think that's a common trait. I will say and I've said this before, and other guests have said it, little people, babies, no matter what type of dwarfism are the cutest babies.

Carly Ruhnke: Um, I started LPA at age, like 13 years old. I was terrified, because I used to go to all like these like Morquio conventions, and they were depressing. And Mackenzie was like, “No, you need to join LPA.” He goes, “That's you.” And I joined LPA. My grandma and grandpa bought me a scooter after the first regionals cause she saw everyone in their scooters and me trying to be in my wheelchair, trying to like not that wheelchairs don't like…they're not accepting there, but it's not easy to get around like fast enough with your friends. I was lucky to like get a group of friends where we all have different dwarfisms. Um, achon, hypo, um, probably missing a couple. They're gonna be like, “Carly you didn't say my dwarfism.” Like whoops.

Jillian Curwin: There are over 400 types just so we can't name them all.

Carly Ruhnke: No. And sometimes Morquio fits right in the bottom of that list somewhere.

Jillian Curwin: So then…

Carly Ruhnke: It does pop up when you register for nationals. It does show up, Morquio. I'm like, Yes, I'm on there. Cool.

Jillian Curwin: There we go. So then I do want to ask before we talk about nationals, I do want to know though, since you came to LPA when you were older… Like, I don't remember my first LPA convention. I've been a member since I was basically born. So then what was it, what was it like for you coming into LPA for the first time?

Carly Ruhnke: Terrifying.

Jillian Curwin: Okay.

Carly Ruhnke: I was nervous. I was like, cause I've heard there was, you know, sometimes cliques with groups of friends. And I was like, I have that in school already because, you know, I was the girl in a wheelchair and not many people saw me as Carly. They automatically thought I had like some sort of like mental disability and they would just like talk down to me for the most part. So I was terrified and I just somehow made friends with this one girl then made, that was in a group. And then I was in. And I'm like, “All right, I'm in. Okay, I did it.” And then they were like, “Oh, we're I'll going to the New York nationals.”

I'm going to do Limited Too outfits for the fashion show. Yes, Limited Too. The skorts The Hawaiian shirts were all different colored, but like all matched and it was so much fun. And we went to the American Girl place and I loved it. And then they dragged me to the kids banquet and I was 13 years old then and I'm like, “What am I doing here? Bob the builder is playing like, what?” And my parents were off, you know, shopping at Macy's in New York. I'm like, “Can someone come get me?” But they had to go to Macy's because my dad came to Nationals with one outfit. One outfit. Why? Does he want me to be embarrassed the rest of my life and be known as the girl's dad that wore the same outfit the entire week?

Jillian Curwin: I was going to say, didn't he know that it was a-

Carly Ruhnke: Like does he not know that could be a reputation?

Jillian Curwin: Well, didn't he know that I was gonna, that's a, it's a week convention.

Carly Ruhnke: You would think. And then I tell him, look down because he's never been around a lot of little people. What did they do when he first walked in the hotel, walks into like a group of little people, like literally walks into them. And I was like, I'm going to be banned for life, like this event. Like, I'm not gonna be able to come here again. And, you know, I'm still here 13 years later. So maybe everyone forgot that and they'll be rereminded this. And then, you know, like, Carly you can not be a member anymore.

Jillian Curwin: I don't think they kick us out unless you do something to get kicked out.

Carly Ruhnke: Yeah, I know.

Jillian Curwin: If I'm wrong, someone tell me, but that's what I'm assuming. So. Brooklyn 2009 was your first LPA event. Wow. So…

Carly Ruhnke: Well, not the first event. I went to like a smaller regional.

Jillian Curwin: Okay.

Carly Ruhnke: Like before that, maybe like one or two, I'm not sure. I think it was, you know, I was like 12 when I joined and then should have became a lifetime member then because it was $300 and it's almost $800 now. Cause you got the lifetime membership of LPA, you did the right thing.

Jillian Curwin: So I want to explain a little bit about like what the different types of gatherings that we have are. So like the country is broken up into different districts which are consist of various states. So, like you, I was, I'm a Jersey girl. So our district was New York, New Jersey and Pennsylvania. And twice a year we'd all get together for a weekend in one of those states for a regional where there'd be medical meetings and kind of business meetings where like basically the adults kind of figure out what's going on. There'd be stuff planned in that city for the kids and for the adults to go to, and at night there'd be a dance. On the second night there's usually a banquet. And it's a chance for me, it was always like a weekend to be normal because everybody was making eye contact with me. Nobody had to stoop down.

Carly Ruhnke: And definitely District two is like the bigger regionals where we get, you know, 500 people to like go to our regionals and, because we have two dances and you know, all that fun jazz.

Jillian Curwin: So those are… so that's a weekend. And then nationals, which you just came back from a couple weeks ago, is a week long convention. It's in a new city every year. There's been a couple repeat cities, but it's usually they try to do a new city every year and there are athletic events. There are also medical meetings. There's an expo where you can buy adaptive products. There's a dance every night. There is a fashion show, there's a talent show, there's a banquet. I'm missing a lot, I'm sure, because there is just so much that goes on over this week. But again, it's like a week of being normal where nobody [is] stooping down to talk to you. You're not having to look up to people to make eye contact with them. You're making eye contact directly. Everyone looks, you know, is a little person, almost, aside from… and their families. And it's just it's like a week for us to kind of have that normalcy. It's like we really get to, you know, when we play sports, we get to play sports. It's not like nothing is…

Carly Ruhnke: And people are fierce.

Jillian Curwin: They are so fierce.

Carly Ruhnke: They are ready to fight. Like I'm like, someone's going to get hurt. I'm like, just, everyone calm down.

Jillian Curwin: They are so fierce.

Carly Ruhnke: Red cards are flying.

Jillian Curwin: I so… I only did it one year and I do want to do it again. I played in 2008, it was in Detroit, and it was volleyball and basketball. And let me tell you, it was… I'm, I wouldn't consider myself athletic. I like playing basketball, but like volleyball was a whole new... I signed up for it cause my friends told me that's what we were doing. Yeah, but it's like it was fine just to be able to compete and like everything was again at our level and you know.

Carly Ruhnke: Yeah, but now they're like very competitive now like there's some teams that start training. They road up like in March and they're training and conditioning and they have like the group chat of like what everyone's doing, what you know and meeting them every night and then they, they're nuts. I don't play sports. Dr. Mackenzie, Dr. Mackenzie barely signed for my cheerleading stuff. Like literally he wrote on there, she can clap and swing her arms. I'm like, well, now, little does he know, when the coach wasn't in a room, I was doing flying stuff. But, you know, it's it's, you know.

Jillian Curwin: It's like we always are like we can do more. Yeah. So I kind of want to… so with this year's convention…. So you said like, it had been, I think, two years because obviously ,due to the pandemic, the conventions in 2020 and 2021 were canceled. So this year it was in Spokane, Washington. I was not able to go, but I want to know what it was like, especially considering this is the first time in, oh, I guess three years, since 2019, that we were, that everyone was coming together.

Carly Ruhnke: So what was pretty cool, even before a conference, is leading up to it, everyone was so anxious of what to even pack. I brought two suitcases. Did I use all the stuff I brought? No. I just did not, I could not remember what you pack for LPA, because you know what it's like. It's like, you need your daytime outfit, you need your nighttime outfit and extras. And then they were like, oh, well, you need a rain jacket. Did I ever pull that out? No. Should I have? Yes, but, you know, it just didn't come out of the suitcase.

So there were… if you were coming from certain parts of the U.S., you had to take two flights because there is no direct flight into Spokane. So my first flight, the first like layover was in Minneapolis. There was like a bunch of little people like waiting for, like we are in our conference starting before we even got there and I was just like, I'm back, I'm back, I'm back. I was like, I was like, can we just get to nationals now? And then we all like get there. We're all like all splitting different Ubers and throwing suitcases, and luckily my brother was there to pile in scooters and pile in suitcases. I was sitting on a suitcase at one point in the Uber. The Uber driver guy, he was like, what have I gotten myself into? And then when you enter the town of like Spokane, driving in, they had like a “Welcome Little People of America” thing like on their like… yeah it was really cute and I was like, we're here. We were all screaming. It was great.

And they, they had different like lanyards this year at LPA. Like normally it's like that little pouch thing, but they had like this plastic card that said your name and like the town [you are from]. So like, I guess if you weren't following the rules, someone could like snap, like take a picture of it, and been like that guy, and then they had where different colored lanyards meant something like green, you're good to go, you want to socialize. Yellow was like you're here but keep your distance. Red with like, don't come near me. Even though anyone that was wearing red was like in the middle of the dance floor so… The only time I wanted red was on my Starbucks line in the morning where like, no one talk me until I have my coffee and then we can be friends. But I feel like at LPA, like everyone gets that. Like if you're on a Starbucks line in the morning, like don't talk to me.

Jillian Curwin: Starbucks in the morning is key at LPA

Carly Ruhnke: It was in the hotel. You didn't have to walk. That that was the greatest part.

Jillian Curwin: I love that. So what was planned? Like, what activities were there for you guys to do?

Carly Ruhnke: I really don't venture and do like the activities that they had planned because, one they're always sold out in like 25 seconds after registration, because, as we all know, registering is the most stressful part of LPA. Because you want to get into that main hotel, because you don't want to be 2-3:00 in the morning trying to get back to your hotel room, and it's across town...

Jillian Curwin: No you do not.

Carly Ruhnke: You end up not even sleeping at your hotel because you crash in one your friend's room because you're like, I'm not doing that.

Jillian Curwin: That's true.

Carly Ruhnke: Right. You know, it's typical nationals - dances, everyone, you know, meeting up in the lobby like that, literally waiting on line to, like, check in, but like, everyone's, like, running off because they're like, oh my God this person, oh my God that person, oh my God, there's a Starbucks here. Like, the Starbucks line was intense. That was an intense line.

Jillian Curwin: I bet. And I think, you know, the lobby, you said, that's like the key, prime hangout spot for all of us every day, not just check in day, I think, it's either lobby or if there's like a reception, like where all like usually like the ballrooms are, like that kind of open area, I think is just like it's like a prime space for us to kind of gather around and hang out.

Carly Ruhnke: The first couple of days of it, like, you know, like after the dance, normally everyone hangs out in the lobby. I think, for most of us, we were so tired, we'd be going up to the room and, like, going to bed by 1:30-2:00.

Jillian Curwin: Oh, wow. That's early for LPA.

Carly Ruhnke: I know. That is early for LPA, but we were all just like, we're not we're not ready yet. It's been too long. Like, my body is not adjusting. I mean, I even slept on the plane both times. I just laid my brother's sweatshirt on the ground and took a nap and still, I was like, like, I can't handle this right now. I'm like, is it my age or is it because it's been a few years like…?

Jillian Curwin: I guess probably because it's been a few years and it is, you know, look, looking back at like past conventions, it is exhausting because we're doing…. Again, cause it's only we only have a week that we're all together.

Carly Ruhnke: Right. I don't know how those international, like people from international coming in, you know, flying in, taking five different flights. I'm like, I can barely handle two.

Jillian Curwin: But I think it's, it's again, it's worth it just to have that time with our community. I say, you know… And I've talked about this previously, like, you know, living in kind of like two worlds, the average height and the little person. And we really only have access to the little person world for a couple of weekends, maybe a couple like gatherings in between, like local gatherings and then a week. That's really the only access that we have to this world.

So when… we want to take advantage of that time, which means we're staying up late to wake up early, to go watch our friends play soccer or to play soccer, or we're going to support our, even if we don't know anyone, we're just going to support the kids walking in the fashion show. We're going to support everyone at the talent show.

I just… one thing I do love about LPA is that even if no one you know is, like, participating in it, people will still go to things like the fashion show, to things like the talent show, to all the sporting events, just to…

Carly Ruhnke: Oh yeah. Everyone supports everything. It's such a great community to be in. You know, you even if you go with like a group of friends, you're making another group of friends as you're there.

Jillian Curwin: Yes. I've always made a new friend at convention, and I think it's so, you know, it's one of the reasons and I just you know, I just for other reasons…

Carly Ruhnke: I also always look for like, to see, if there's like a newcomer, if they're on their things, because, like, I'll go up to them, be like, hey. Like, I'll let them know, like, you know, if they're older, like, oh, the dances really start for us at like ten because the little kids were, you know, between nine and 10 and 11, and then their parents are dragging them out to go to bed.

And that's when the party starts. Especially like the Barty room. Since like all of us, like all of my group of friends, finally, we're over the age of 21. We'd start off in the Barty room this year.

Jillian Curwin: Oh really?

Carly Ruhnke: On Karaoke Night, we took over.

Jillian Curwin: Really?

Carly Ruhnke: Yeah. It was a party in the Barty room.

Jillian Curwin: Yeah. I think it's also, that's another thing like our, our night doesn't really start until later because again, we want to also, and I think whether we're consciously doing it or not, we want to let the kids, the younger kids, have their time and have their…

Carly Ruhnke: Yeah.

Jillian Curwin: Have their dance floor and have their dance, too. And I think it's, you know, coming to convention and, I think it is a privilege to be able to do that in LPA, to be able to go…

Carly Ruhnke: It is. And you know, I think it's so, going and even if you don't play the sports, it's just, or don't do the fashion show and don't do the talent show, but you're just going to be with your people. Like, I think it's just so necessary.

This is the first year, actually, I went and watched some sports. I went to bocce. I went to soccer. And then, at soccer, there was a torrential downpour. And I was literally like running up the hill in my scooter to get to the bus. And I'm like terrified because of my battery and my scooter. So I'm like trying to like spread my legs out to like cover it. I was like, this is my scooter. It's my baby.

Jillian Curwin: Right.

Carly Ruhnke: Because I've had at a conference coming home after San Fran actually, my scooter was sent to Greece.

Jillian Curwin: It was sent to Greece?

Carly Ruhnke: Greece. Yeah. From San Francisco to Philadelphia airport…

Jillian Curwin: How does it then get on a flight to Greece?

Carly Ruhnke: I don't know. I'll never be able to explain it. I had separation anxiety from my scooter for three weeks, not only because my grandparents bought this for me, but it was like my grandpa spent days making it my size. The seat's lowered. The handle's lowered. Like everything about it is for me. So I was like freaking out and it was all over Facebook and Twitter. Like, literally, like reshared. Like, all of district two like, like someone find Carly's legs. She needs her legs.

Jillian Curwin: Well, and I think that reflects a larger problem in the disability community in that people, non-disabled people, don't recognize that these mobility devices, whether it's a scooter or whether it's a wheelchair, it's your independence. It's how you get around the world. And it's not just some, it's not supposed to be treated like luggage. I've had friends who've had their wheelchairs broken, who have had you know, fights with flight attendants over like storing their wheelchair in the plane because they're too afraid to store it under in underneath because it's been broken before.

Carly Ruhnke: And, I mean that, I was surprised I let them put it out underneath after that. Literally on my second flight, I didn't see the scooter coming up this year and I was like, oh my God, not again. What I want to do? I was like contacting my other friends that have scooters. I'm like, listen, we're going to be scooter buddies for the week if my scooter doesn't come up. But it came up and I was like, okay, there's my baby. I can't breath until I see my scooter.

Jillian Curwin: Right, and I think it's something that, and I've seen like people have raised, you know, my friends have been raising awareness about it. I've been doing my part, to support, because I don't require a mobility device, but I'm trying to spread awareness that this isn't, again, it's not a piece of luggage that you can just toss on to the plane. And, you know, if it gets lost, it's no big deal, we'll find it or whatever. Like, this is how you get around the world.

Carly Ruhnke: We don't just use it at nationals. Like, I use it for work.

Jillian Curwin: Right, like these are, these are your legs. These are like your scooter is your legs. That's how you get around.

Carly Ruhnke: Mm hmm. That's another thing I love at LPA, is seeing all the scooters parked, like, for, like outside the rooms for, like, different meetings and stuff. It's like, look, this is, and you know who's is who's scooter just by, like, the personality of it. And I'm just like, all this scooter parking is like real neat, but they really need to make, like, tape scooter lines because I've been, my scooter's been trapped behind other scooters. I couldn't get it out. Luckily my brother just lifts the other scooters and that's why you bring an AP with you.

Jillian Curwin: Right. APs do come in handy at convention even that like.

Carly Ruhnke: Yeah. Especially like in like the sketchier towns that they're in. I mean, I was almost jumped in San Francisco so… In like daylight, like going to lunch. This guy put his legs on each side of my scooter and he was like, “You're going down.” And I'm like, and I'm like, that's, this is it, and my friend was like, “Get the F out of here!” And ran his foot over. And we went to lunch and I was like, Ed I'm not leaving the hotel without you.

Jillian Curwin: Oh, my gosh. That's… I'm so sorry that you had to deal with that. And the fact that you had to deal with that at convention when this is like, supposed to be a celebration of being a little person and then yet...

Carly Ruhnke: Well at the hotel, everything's great. It's like leaving the hotel.

Jillian Curwin: Right, and it's like leaving the hotel, you’re… it's like, you're, even though you're at a convention and you're with people who look like you and your friends, you're still…

Carly Ruhnke: I'm glad I was with my friend and didn't venture out like, alone. Like one of my friend's mom's always swore by the buddy system and we still, as adults, do the buddy system. We will tell each other on the dance floor we're going to the bathroom and go to the bathroom together. Like, we won't leave the bathroom without each other. And, I don't know. I'm a fan of the buddy system.

Jillian Curwin: Buddy system works. It's key.

Carly Ruhnke: The buddy system, especially like after age of 21 and there's alcohol involved, definitely, the buddy system because you don't know if one drink is going to hit you too much, you know…The bartenders at first they're, you know, scared to make the drink too strong. And then towards the end of the week, they're like pouring half that cup of captain and coke and you're feeling it.

Jillian Curwin: Yeah, it's it's a long week, I will say that I think I come home and I'm always like so happy that I went. But I'm also just like, ready to sleep for like a good 48 hours.

Carly Ruhnke: You need a vacation after LPA.

Jillian Curwin: Yes.

Carly Ruhnke: It's like it's, it is a vacation, but you're like, I need my bed. I need no one banging on my door. I need real showers that aren't 5 minutes long cause, I don't know about you, but I get FOMO. Like I'll only sleep a couple hours a night because I'm like, what are my friends doing now? What's going on? I'm really proud of myself this year. I slept about four to six hours a night. I was like, you know, maybe my FOMO's getting better or I just don't care.

Jillian Curwin: Right. Well, again, it's like we only have a week. We don't want to lose time with our friends.

Carly Ruhnke: Exactly.

Jillian Curwin: I do want to pivot a little bit and I want to talk about The Little Carly Foundation. Can you explain what that is?

Carly Ruhnke: Yes. So The Little Carly Foundation started last year in March area. What we do is, we're raising money to help active members go to LPA. I was able to speak with LPA a lot this year. They actually put out flyers advertising The Little Carly Foundation this year. We would help with your hotel room, with your registration and give somewhat of a gift card, you know, visa gift card to help you out for the week. This can help active family members or young adults that are in college who just spent $3,000 on a computer and books and you want to go. So what they're going to do is, it's going to be like an application through the, I think, the Kitchen Group. If you're a little person, you know what I'm talking about. If you're not, just go on little people, not little people, lpaonline.org, and it like, kind of like ,explains everything but it hasn't, the application hasn't started yet, but that will be before Austin. Are you going to Austin?

Jillian Curwin: Yes, I will be going. I, I haven't been since San Francisco so I am ready to go.

Carly Ruhnke: So you really have FOMO.

Jillian Curwin: I'm really having FOMO. I really want to go back. You know, it's like, I miss my friends. I miss, you know, I want to do the sports this year. I think after watching my friends do soccer in San Fran, I was like, I want to play. I love playing basketball. I would love to do that.

Carly Ruhnke: Well you've gotta get started conditioning now, cause they are serious.

Jillian Curwin: Girl I know. They, it's, well again, it's like cause we're in these, in this environment, we're able to compete. And so it's like, you know, the world is kind of saying, “Oh, you can't do this. You can't play at our level.” And here it's like, watch us. Like, let us show you how athletic we are. Let us show you what we are capable of.

Carly Ruhnke: I love watching the little kids play sports. They're adorable.

Jillian Curwin: They are, I think, and it's so important to see that.

Carly Ruhnke: I think that's where the most of the fans are. With those little kids.

Jillian Curwin: Yeah. And I love that they're also the ones who are doing the talent show and who are doing the fashion show. And I think it's so important to see them because they're building these memories and like, building this community now, when they're younger. And I think it's so important to have because these are lifelong relationships.

Carly Ruhnke: Yeah I wish I'd started younger with LPA. Like, I highly encourage anyone, you know, that I know with, as being diagnosed with Morquio, like the first thing I tell their parents, I'm like get them involved in LPA because, not that the Morquio conferences and stuff aren't good, I'm not saying that, but like there's more to life than just the medical.

Jillian Curwin: Right.

Carly Ruhnke: And they do have like the different meet ups for different dwarfisms throughout the week. The rarer ones, not, you know, the common ones.

Jillian Curwin: Yeah.

Carly Ruhnke: The common ones are like, the common ones, they're like, you guys know what and who you are.

Jillian Curwin: Do you have a favorite memory from convention, whether it was the one that just happened or from past conventions you've been to?

Carly Ruhnke: I just love when, at the end of the night after the dance, and we all scatter out and we're all trying to find our group of friends, because we lost them getting out of the dance, because the security guards are shoving you out of there. Like we're like gahh (unintelligible grumbling). One more song.

Jillian Curwin: They're like, we wanna go to bed.

Carly Ruhnke: And they're like but we don't. And then meeting them in the elevator, the elevator traffic. I love the elevator traffic. It's so funny because it's like, how many scooters can you fit in one elevator and how many other little people are you going to pile into that elevator? I just love it. Also, too, like I love like that I'm an adult partying with my doctors. It sounds weird, but it's like they're not your doctor then, you know?

Jillian Curwin: Right, but yet you still kind of feel like you're their patient, even though you're not in a medical setting.

Carly Ruhnke: You do, but like, it's awesome. Like, I'm on the dance floor with my surgeons. I love it. I'm singing karaoke with them. I'm you know, I'm watching my geneticist, Dr. Bober, play the drums.

Jillian Curwin: He plays the drums?

Carly Ruhnke: Yes.

Jillian Curwin: I did not know that.

Carly Ruhnke: I know. In The Little Big Band.

Jillian Curwin: I didn't know that.

Carly Ruhnke: We'll go next year. Front and center.

Jillian Curwin: Yes, I did not know that.

Carly Ruhnke: Oh yes, and he is smiling. Cause sometimes, we all know, he can be a little serious.

Jillian Curwin: Yeah.

Carly Ruhnke: Me and him are now on the joking phase of our relationship with patient and doctor, because that first, like, couple years is like seriousness and then like once you've known them for ten plus years…

Jillian Curwin: Yeah.

Carly Ruhnke: Like especially Mackenzie, I've known him for 22 years and he's leaving us and I'm like, you can't just leave me like that.

Jillian Curwin: Right.

Carly Ruhnke: But, you know, luckily we have his son. We're gonna be in good hands. If the son gets, you know, nervous about anything, he can always call his dad. Dad, Carly did something to her back. It's connecting to this and that. What do I do? And he's like, he's like, this is why I retired now.

Jillian Curwin: I think we have we are in very good hands with his son. But yeah, I think for me my favorite part, I don't know if I have one like specific moment from any specific convention, but I think it's kind of in a similar vein. I think, for me, it's kind of like the gathering before the dance. Me and my friends would always, like, get together in someone's room, get ready, kind of pump ourselves up and I think it's just that time is like we're all ready to go. We're all excited for like what the night has in store.

Carly Ruhnke: Mm.

Jillian Curwin: And again, like it's just like, it's just us hanging out. Like I think those memories are like even the memories in the lobby of just like when we're trying to figure out when we're taking an hour to figure out what we're going to do…

Carly Ruhnke: Where we're going to eat. Then you end up just eating at the, you know, the restaurant at the hotel because you're like, we can't figure it out. I like when they do conferences near a lot of restaurants.

Jillian Curwin: Yes.

Carly Ruhnke: And also that, like, little people menu that they always have. Love the little people menu because we all know we try to be cheap that week when it comes to food.

Jillian Curwin: Because convention, it adds up.

Carly Ruhnke: It does. Especially the flights this year. They were no joke.

Jillian Curwin: Yeah, they were.

Carly Ruhnke: They were over a thousand a ticket.

Jillian Curwin: Wow. Yeah. Um, Carly, who do you look up to? Who do you look up to?

Carly Ruhnke: I look up to a lot of people.

Jillian Curwin: Okay.

Carly Ruhnke: Um, I look up to my grandma. I look up to my siblings, um, in different ways. I look up to my brother because he's always trying to push me to do more for myself. And I look up to my sister because she always gives me that extra little bit of confidence that I don't always think I have. I look up to my best friend Madison because she always makes sure that I am feeling my best and doing my best when those dark times happen. Because I, I love who I am and I love, you know, what Morquio has made me. But every once in a while I wish that my life was a little easier, like having achondroplasia.

Jillian Curwin: Oh interesting. Okay.

Carly Ruhnke: Because some achons have no surgery, and they're just good to go. Or they just needed, you know, their legs straightened and some ear tubes. Um, so my scars bother me, but it's really, it's hard to explain, but it, it just, she always makes me feel beautiful, even at, like, nationals. I'll have like, 20 outfits picked out, and she'll be like, all right, you're going to wear this and this. And she's, I can't take any credit for my hair and makeup because I don't know how to do either one of them. So if my hair and makeup is looking really good, it's not me, it's Madison.

Jillian Curwin: Gotcha. I find it interesting that, you know, a lot of people… I've been asked, I'm sure you've been asked too, like, do you ever wish you weren't a little person? Like, do you wish you were average height? And I found it interesting that you said that you wish that you sometimes wished you were an achon, because I don't hear that often.

Carly Ruhnke: Yeah, I wouldn't wish I wasn't a little person. I love being different and unique, but sometimes Morquio takes a different toll on life and it's a lot of extra medical. I see groups of different doctors twice a year and I've been hospitalized a lot this year due to the emergency surgery and then COVID twice like in the hospital twice, a local hospital, But, because of my weight, they I couldn't get the enzyme, so I had to go to DuPont. So, and that's roughly 2 hours from my house, which is nothing for my parents to drive because they've been driving it my entire life. Before that, they were taking me to Dr. Copus and Maryland. You know, Dr. Copus?

Jillian Curwin: I know the name. I've always been a DuPont person. It's interesting cause my mom was referred to there, I guess, right before I got diagnosed, when they weren't necessarily certain what my diagnosis was. And she was saying that, because then she was saying when… I'm the older sibling, so my brother, when she was, when they were like doing the testing on him, just to kind of see what he was, she wanted to know because she was like prepared to, if my brother had any medical needs in the hospital, that was the best for him, was like on the other side of the country…She said she was like prepared to like my mom would take me and stay in Jersey and I'd have DuPont and my brother would live with my dad wherever he needed to go where, like we'd make that work. So I, I think it's interesting that like… I know, like, patients will travel on a plane to see Dr. Mackenzie or Dr. Copus or Dr. Ain, when he was at Hopkins, like, you know, people will do what we have to do to get the treatment we need.

Carly Ruhnke: Yep. And we can be there till we're 35 and I'm like nine more years and I'm like, like anything that needs to happen needs to happen now.

Jillian Curwin: I'm like, you're not going to want me when I'm 35, you're going to want to kick me out. I thought they wanted to kick me out like, you know, years ago.

Carly Ruhnke: Yes. I love their gift shop. It's the best.

Jillian Curwin: Are there any questions I have not asked that you would like to answer?

Carly Ruhnke: I'm not asked, but I just want to share, if you want, any information on The Little Carly Foundation. We are on Facebook. We're on Instagram. You can contact me through my actual Facebook, Carly Ruhnke. I've had a lot of messages recently, people asking if I could help with other aspects of this in specifically to help with Little People of America nationals. So, and if you're already an active member, because they already have a program for nonmembers or new members. That's why I started a foundation for active members because there's been years where I couldn't come because financial reasons. And it's hard when you can't go to an LPA nationals. You have, you see it happening and you're like but I want to be there. Like, oh my gosh, this happened and I missed it?

Jillian Curwin: I look, well I was like, yeah, I think it's, that you're doing that, because again, I think that is financially, you know, it is a privilege to be able to go. So the fact that you're doing your part to help other members be able to go and is fantastic, and you then did to answer my next question is where can people follow you. So did you want to just give your handles one more time?

Carly Ruhnke: Um, Little Carly Foundation Inc. on Facebook and @littlecarlyfoundationinc on Instagram. We also have a Venmo that is linked on both, where you could donate if you'd like to. We weren't able, we didn't have enough finances to help someone this year, but our goal was to help at least a family and a couple of young adults next year.

So our next 5K run-slash-walk will be at the end of April. Still finalizing somethings, but we're looking forward to that. We're doing a few local fundraisers in New Jersey. The Lakewood Blue Club are doing a fundraiser for us, so that'll be fun. But yeah, definitely help reach out and spread the word of the Little Carly Foundation. That's the goal here.

Jillian Curwin: That's awesome. I'll have links to all of those in the show notes, so go give a follow, go support any way you can, especially if you are part of the community. We all know how important being able to go to convention is, so if you can help out, please do so.

Carly this has been an amazing conversation. I do have a… I do have a little icebreaker that I do with all my guests, but I do it at the end because I think it's more fun that way. So I have five categories and I want to hear your favorite in each one.

Carly Ruhnke: Okay.

Jillian Curwin: Your favorite book.

Carly Ruhnke: My favorite book. Five Feet Apart.

Jillian Curwin: Nice. Favorite TV show.

Carly Ruhnke: Grey's Anatomy.

Jillian Curwin: I, I love the early seasons. I love the early seasons. I do want to know, like, I'm trying to stay loyal till the end. But it's it's gotten a little hard. But like the early seasons of Grey's was the best.

Carly Ruhnke: It's really hard after McSteamy and McDreamy died. But, you know, you just hang on. Especially now that Alex is gone.

Jillian Curwin: I would say spoiler alert, but like everybody knows now.

Carly Ruhnke: Yes.

Jillian Curwin: Everybody knows. Favorite drink.

Carly Ruhnke: Regular drink?

Jillian Curwin: Whatever your favorite drink, however you choose to answer that.

Carly Ruhnke: I like a Captain and coke or a Captain and green tea.

Jillian Curwin: I've never had that.

Carly Ruhnke: Captain and green tea. It's very good. It's very smooth on the stomach.

Jillian Curwin: Interesting. I might try that. Favorite piece of advice you've ever given.

Carly Ruhnke: My principal in elementary school always said, “Make it a great day, or not. The choice is yours.” And I just I tell people that all the time.

Jillian Curwin: I love that. And the final one is favorite piece of advice you've ever received.

Carly Ruhnke: Be who you are and not what others want you to be.

Jillian Curwin: Love that. Perfect way to end it. Thank you so much, Carly, for coming on. The final, final thing I have to ask of you is just to remind my listeners in your most badass, most fierce voice possible that height is just a number, not a limit.

Carly Ruhnke: Height is just the number, not a limit.

Jillian Curwin: Always Looking Up is hosted by Jillian Curwin and edited and produced by Ben Curwin. Please make sure to rate review and subscribe and follow on Spotify so that you never miss an episode. Follow me on Instagram @jill_ilana and the podcast @alwayslookingup.podcast for updates and check out my blog Jillianilana.com for more content about what it is like to be a little person in an average sized world.

Thanks for listening. See you next week.