Dwarfism: Life as a Little Person
Episode Summary
Jillian Curwin, an advocate for dwarfism and disability awareness, is the host of the podcast, “Always Looking Up.” She was born with achondroplasia—a form of dwarfism. On the previous episode of Wisdom Shared, I spoke with her mother, Audrey. You can listen to that episode here: https://wisdom-shared.simplecast.com/episodes/audrey.
In this episode, Jillian talks about what it’s like navigating this world that is primarily designed for average-height people when she herself is a little person. Her commentary on films and TV is eye-opening as she shares her frustrations, solutions, and creative visions. All these ideas can go a long way toward accessibility and inclusion if we as a society change our own perspectives and see life from other points of view.
I learned a lot from speaking with Jillian for this episode, and from speaking with her mom Audrey in my last episode. Most of us take our average height for granted. Jillian helps expand our understanding with humor, intelligence, and most of all, first-hand experience as a little person.
From this Episode
Achondroplasia
Achondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means “without cartilage formation.” https://medlineplus.gov/genetics/condition/achondroplasia/
Jillian’s Disney Project (includes photos)
https://cripplemedia.com/waiting-for-my-disney-princess/
Thinking Big: The Story of a Young Dwarf Children’s Book
https://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264
Little People, Big World TV Show
https://go.tlc.com/show/little-people-big-world-tlc
Nancy Volpe Beringer: Fashion Design for Sustainability and Adaptability
https://www.nancyvolpeberinger.com
Little People of America
https://www.lpaonline.org
American Association of People with Disabilities
https://www.aapd.com
Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
https://www.fordfoundation.org/about/people/rebecca-cokley/
Maria Town, American Association of People with Disabilities, President and CEO
https://www.aapd.com/about/maria-town/
Wigs and Wishes
https://www.wigsandwishes.org
Follow & Contact Jillian
Podcast: https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385
Instagram:
@jill_ilana, @alwayslookingup.podcast
Website:
https://www.jillianilana.com
Email:
alwayslookingup227@gmail.com
Find and Follow Carole and Wisdom Shared:
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The Wisdom Shared Team
Audio Engineering by Steve Heatherington of Good Podcasting Works
Co-Producer and Marketing Coordinator: Kayla Nelson
Production Assistant: Becki Leigh
Listen on:
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[00:00:00] Jillian Curwin: There is nothing more humiliating than going to use a public bathroom and not being able to wash your hands. And I don’t think people – average height people – realize that that’s something that we have to deal with. Or to like, have to put our purse on the floor, ’cause we can’t reach the hooks.
[00:00:15] Carole Blueweiss: Welcome to Wisdom Shared, where parents and sometimes the kids are the experts and where connection inspires change. I am your host, Carole Blueweiss. If you’ve been following this podcast, you know that I usually interview parents. When possible, I sometimes explore the perspective of the children as well. Today is one of those times. My special guest is Jillian Curwin and she will be introducing herself.
[00:00:44] Jillian’s family and my family have been friends for many years. I never thought of Jillian, who was born with a form of dwarfism, as disabled. So when I saw a Facebook post of hers with a description of her own podcast, Always Looking Up, I thought to myself, hmm, I would love to know more about what it’s like to be Jillian and her mom, Audrey who raised Jillian, now 26, and her younger brother, Ben. If you haven’t had a chance to listen to Audrey’s interview yet, it’s not too late.
[00:01:19] And I encourage you to listen because she shares her motherly perspective of raising Jillian. One of the many subjects Audrey spoke about was how little people or dwarfs have been portrayed in movies like The Wizard of Oz and Willy Wonka and the Chocolate Factory. In this interview, Jillian dives deeper into the subject of movies and stereotypes.
[00:01:46] She made me consider what messaging Disney gives our children about what type of girl gets to be princess and why some girls never get to see themselves as a Disney princess. What are those characteristics and who gets to decide? And how do these decisions impact our children’s self image and expectations of women in this world? How do these characters influence the way children grow up to be adults?
[00:02:14] While looking back on my own life, I remember growing up and hearing the stories of passive, naive, obedient, and very thin princesses. And that so-called slipper in the Cinderella story, it was more like a stiletto than a slipper. Nevertheless, in my family, I was encouraged to wear these high-heeled shoes, even though I expressed discomfort. And even though I had a hard time walking in them, I was told I need to figure out how to walk more gracefully in these pumps. My preference was for a flat shoe. But that was seen as unfeminine.
[00:02:55] That was then, in the 1970s and 80s. Times have changed, thankfully. Modern princesses are more comfortably dressed, more confident. They have their own strong identities, aspirations separate from their Prince Charming. But there’s still not enough diversity when it comes to Disney’s portrayal of princesses.
[00:03:15] Jillian has some ideas of her own. Let’s listen to Jillian tell her story and let’s listen to some of her great ideas. Welcome to Wisdom Shared.
[00:03:28] Jillian Curwin: Thank you. I’m excited to be here.
[00:03:30] Carole Blueweiss: Somebody wanted to know who you are. Let us know, tell us.
[00:03:35] Jillian Curwin: My name is Jillian Curwin. I’m 26 years old, live in New York City. I now work in PR. In my free time, one of the things that I’m doing is being an advocate for dwarfism and disability awareness on social media. I also have a blog. I also do have a podcast. Both are called Always Looking Up. So yeah, it’s a little bit.
[00:03:56] Carole Blueweiss: I am so inspired by your podcast. I’ve listened to many, many of your episodes. I’ve learned so much. And I was curious if there’s something you experienced as a child that sticks with you today?
[00:04:11] Jillian Curwin: Up until second year at Rutgers University, I’ve always been the only little person in my school and really anywhere I go, except for little people conventions. I’m always used to being a walking teaching moment.
[00:04:23] In first grade, I was invited to read. It was one of the books that I had for as long as I could remember about this girl who was a little person. They’d followed her around a couple days, I guess, talked to her parents and kind of showed like what it was like. I think it was made in the eighties. And, you know, she saw one of the doctors that I saw when I was a little girl.
[00:04:42] So I brought that in and I just read it to this class and answered questions. My parents came in, they were invited to watch me. And I didn’t really think anything of it at the time. But looking back, I think that was the first moment where I was teaching somebody else, let alone a group of people, what it’s like to be a little person and that we’re not so different. At least that’s kinda like how I saw it at the time. I think now I’m much more aware of the differences.
[00:05:11] Carole Blueweiss: That’s great. I love that. How old were you?
[00:05:13] Jillian Curwin: Six or seven.
[00:05:14] Carole Blueweiss: How tall are you now?
[00:05:16] Jillian Curwin: Four feet on a good day. It’s 3’11” to four feet, depending on.
[00:05:20] Carole Blueweiss: When you’re feeling strong and optimistic.
[00:05:23] Jillian Curwin: Yeah [laughs] depending on the mood.
[00:05:25] Carole Blueweiss: At six years old, was there a difference like there is, let’s say now, with average height people?
[00:05:32] Jillian Curwin: Kids aren’t necessarily aware of it either, but I think when we got older even to like fifth grade. Fifth grade at our school district, it’s like your last year. And then you merged with another fifth grade class to become your sixth grade at your new middle school.
[00:05:46] My guidance counselor had the idea towards the end of the year for me to go to the other elementary school and meet the other fifth graders. They were gonna see a little person for the first time when they saw me. Then maybe I was a little more aware of it, but again, it still was just like, okay, I’ve done this before, when I was younger. Do it again. I got to like get McDonald’s and everything afterwards. I got to bring my friends with me.
[00:06:09] I think probably around the transition from elementary to middle school was when I, not just notice but feel a difference between myself and my average height peers.
[00:06:19] Carole Blueweiss: I have to be honest. When I say the word dwarf, I feel like it’s a bad word. But in my education with you, listening to you speak, I think I’ve learned, and correct me if I’m wrong, that there’s absolutely nothing wrong with the word dwarf.
[00:06:32] Jillian Curwin: Dwarf is correct. I think if you’re using it, though, associating it with the negative stereotypes, then that’s not okay. But if you’re technically speaking, I am a dwarf. That is what my medical diagnosis is, I have a form of dwarfism. Little person is probably the more universally used term amongst little people.
[00:06:53] I’m a person who just happens to be little. So I think those are the two. Those are definitely the two accepted terms to call me. What’s not okay is the M word, which is midget. That is a derogatory slur towards people with, towards little people, towards the little people community. We don’t want to be called that. Yeah, and that’s just a word that I do not accept and use. And it’s a word that a lot of people find in our community would view as derogatory.
[00:07:24] Carole Blueweiss: Yeah. Yeah. Well, the films and the media, that doesn’t help. Right?
[00:07:29] Jillian Curwin: Yeah, some do. Some forms of the media is good representation. I would say Little People, Big World, a reality television show. And, you know, Peter Dinklage is definitely the most famous little person actor, if not the most famous little person at present. And he is very well known for not taking roles that are derogatory and that do perpetuate certain stereotypes. He takes on roles that are real people, and he just happens to be a little person playing the part.
[00:07:58] Carole Blueweiss: Are you a fan of his?
[00:08:00] Jillian Curwin: Yes, I’m a fan of his acting. I do think that he has such a big platform that he can do more for the community. And I get that not everyone is expected to, but I just feel like because he does have this such a big platform that he has the opportunity to do so, and I just wish he would sometimes. But as an actor, I’m very much a fan of his work.
[00:08:21] On the other side, there is the seven dwarfs of Snow White, where they’re emotions, you know, they’re named emotions. They’re not even named after people. And you know, the reality shows like the Little Women series, I’m not a fan of, because I think again, they perpetuate certain negative stereotypes and just don’t put little people in a positive light.
[00:08:48] Carole Blueweiss: Tell us about your Disney project, if that’s even what you call it.
[00:08:51] Jillian Curwin: That’s what I called it for a while. It was my super secret Disney project. The idea of waiting for my Disney princess came to me when I think they announced the casting for one of the live action Little Mermaid, and they announced who was gonna be Ariel.
[00:09:05] And there, I know there’s a lot of discussion about who they picked and there’s just like, some people say we’re finally getting our Disney princess because she’s being played by Halle from the girl group Chloe x Halle. And because Halle’s Black and people were saying, well, like she’s not Ariel. And I’m like, she absolutely can be Ariel.
[00:09:22] There’s no rules that say Ariel is white or, you know, she’s a mermaid.
[00:09:28] Carole Blueweiss: Yeah.
[00:09:28] Jillian Curwin: She can do whatever. She’s a mermaid! That’s the only description is that she’s a mermaid. So I thought, like she can sing. She’s great. Like, let’s do it. Like I’m ready for it. And I realized I’m like, I’m still waiting for even my animated version of a Disney princess of someone with a disability or, you know, specifically someone with dwarfism, but honestly, a disability to start. That’s kind of where that idea came from. And then October is Dwarfism Awareness Month. My platform had been growing. So like, I wanna do something. I had the idea I’m gonna show the world that a little person can be a Disney princess.
[00:10:05] And I’m gonna do this for my younger self who didn’t have a Disney princess to really identify with. And for hopefully the next generation of young little people, women who are looking for their Disney princess and are still waiting. When I first conceived it, the scale was not there as what it turned out to be.
[00:10:26] So I reached out to a friend who knew a photographer, and then I reached out to a hair and makeup artist. And from there, really evolved into what it came to be, which was a really, in my honest opinion, I thought the shoot tuned out really well. I remember when we did the first shots and she was showing just me on the computer and we hadn’t edited anything.
[00:10:47] It was just literally we had taken seconds ago and I’m like, oh my gosh, it worked. But I saw those pictures and I started tearing up. ‘Cause I’m like, I see it. I see it. So if I saw it, I was like, okay, if I see it, hopefully other people see it, too. And then in conjunction, I wrote a written piece explaining why I did what I did and the point in that we’re still waiting, in that it’s time for, with everything else going on with us talking about diversity and inclusion, especially in entertainment and with representation, it’s time to have a disabled Disney princess.
[00:11:22] Carole Blueweiss: Can you read a little bit from what you said?
[00:11:24] Jillian Curwin: I wrote this piece to explain what it means to be still waiting for my Disney princess. Like what it means when I say that and why I decided to basically dress up as these Disney princesses and do this photo shoot, and to prove that a little person can be a Disney princess.
[00:11:43] With their current roster of princesses, with their perfectly able bodies, Disney is reinforcing the idea that disability is not beautiful, that those with disabilities cannot be powerful. And that those with disabilities are not aspirational. They’re telling little girls that if they are a dwarf, if they are disabled, that they could never be royalty. Who says the Disney princess can’t be a little person? Who says the Disney princess can’t be disabled?
[00:12:09] In the case of Ariel in the Little Mermaid, the supervising animator, directors, writers, and producers were white men. If the Disney princess can be a mermaid, talk to mice or have hair with magical powers, then I say a Disney princess can be a little person. So this year, I decided to challenge Disney’s definition of a princess.
[00:12:28] Each princess was chosen for a reason. Snow White, because she always finds the positivity in her trauma. Ariel, because she unquestionably trusts her own heart. Belle, because she understands that you are your most beautiful when you are being your true self. And Merida, because she’s unafraid to break with tradition and fight to follow her own heart. I must confess that it was not until I saw the images in the monitor, raw and unedited, that I truly felt and looked like a Disney princess.
[00:12:57] Carole Blueweiss: Who was this first character that you did the first photo shoot with?
[00:13:00] Jillian Curwin: The first one I did was Belle, which everyone would assume because I’m brunette that I would identify with her, but when I was younger and I would say, I wanna be a Disney princess, I would be told there’s a height requirement.
[00:13:12] So I couldn’t really identify with someone who I was told I could never be one day. So Belle was the first one. And I reach out to, can’t believe I can say that she’s my friend now, ’cause I’m such a fan girl of her, Nancy from Project Runway ’cause I knew this would be something she would wanna do. And we did this. She styled the shoot.
[00:13:31] So I went to her studio and what I’m wearing are like upcycled prom dresses that we just not even really had to alter, just manipulate. When we were trying on, I remember, I think it was the Belle dress too, like it just fit and I’m like, this doesn’t happen with normal clothes. So why is this happening now? I think it was all these little magical moments to lead up to the big, magical final piece. I still can’t believe I did it.
[00:13:58] Carole Blueweiss: Did you do these each character as a separate shoot?
[00:14:02] Jillian Curwin: No, we did it all one day. So it was a four, five hour shoot. So we did Belle first and then Snow White, then Merida,, then Ariel. Those were the four that like, okay, if I put on the wig, if we really do this, people are gonna get it. And it was also the availability of what we could find.
[00:14:22] Carole Blueweiss: Have you always loved fashion?
[00:14:24] Jillian Curwin: Yes. For as long as I can remember. And I remember watching my first episode of Project Runway. Where I was, I was in my parents’ bedroom. I just like stumbled upon it. And then I can remember shopping at The Limited Too when it was the store to go to before it was Justice and try to copy the mannequins as best as I could if I found an outfit I like. I’ve always been very much interested in fashion.
[00:14:50] Carole Blueweiss: When you said that you took photographs of the, what the mannequins were wearing, what did you do with the photographs?
[00:14:57] Jillian Curwin: I would then go around the store and try to find what they were wearing and try to like recreate the outfit to the best of my ability. Usually like with the tops and like whatever was waist up, I could find a fit. Pants, we would just kind of go with whatever I had in my closet. Or like if I needed a pair of jeans, ’cause then and even now, like it’s still hard. Like jeans have to be altered. So I find jeans that are gonna last a long time, so I don’t have to keep getting new jeans altered.
[00:15:25] Carole Blueweiss: And is that true of like shorts and skirts and dresses, that things have to be altered?
[00:15:31] Jillian Curwin: Most things. I would say shorts, uh, yeah, no, I let’s say even shorts. Yeah. I’d say maybe the only thing are shirts, but even those, like if they have a long sleeve, those sometimes have to be hemmed or taken in. ‘Cause our body type is different. We’re not, we don’t have average height bodies.
[00:15:48] Carole Blueweiss: What is Project Runway?
[00:15:50] Jillian Curwin: Project Runway is a fashion design competition. It was originally on Bravo, went to Lifetime, is back on Bravo now. I think they’re in their 19th season. Since I stumbled upon the first episode, I’ve been obsessed with it. They challenge their designers to make anything from groceries at a grocery store to making the most insane avant-garde outfits.
[00:16:14] And it’s just, I’ve just been obsessed with the show. Last year’s season, Season 18, which is the season right before the pandemic hit, there was a designer Nancy who was all about sustainability and adaptability. And I immediately loved her because of her energy. She was just so positive, so fun. And she became a fan favorite of mine during an episode where they had to design for Olympians and Paralympians.
[00:16:40] And she designed a gown for Tatyana McFadden who’s in a wheelchair and she was the only one who was really just so into it and embraced the challenge and saw it as a real opportunity and really did her best to make the garment not only fashionable but it was also functional. It was adaptable. Like she had a train on it, which was like, I was just, my jaw dropped when she came on the runway.
[00:17:06] So since then, she was like, she’s been a favorite of mine. I’ve been following her work ever since, seeing what she’s doing. And my one friend in New York here, her name is Brie. She modeled for her during her finale runway show. And so she’s been working with her since then. And so I was actually out to brunch with her.
[00:17:25] Carole Blueweiss: Is she a little person too? Brie?
[00:17:27] Jillian Curwin: No, she’s in a wheelchair. I was coincidentally just out to brunch with her and I saw Nancy had posted something. I said, you know, I’m just gonna comment and see what happens. So I commented something. She has a luxury resale business where she will make adaptable any garment that she has for someone with disabilities.
[00:17:46] It’s great. ‘Cause normally that’s comes with another price, but she will do that at no extra charge. So I commented on one of her posts saying, have you ever thought of doing this for little people? Because the only models I had seen her work with were in wheelchairs, which for the fashion industry, that is still a huge deal. She responded saying absolutely, yes. And let’s talk.
[00:18:07] And I’m thinking like, it’s just gonna be talking about like how it could work. You know, things like that, was not prepared for her to ask me to possibly be a model for her. They were doing it’s called Project Runway Redemption, where they were having designers who didn’t win, come back for like a mini competition and leading up to the premier of the new season.
[00:18:28] Carole Blueweiss: There’s the story of the Vogue shoot, which I imagine is separate but equal? Separate but more amazing.
[00:18:39] Jillian Curwin: Clearly amazing, definitely separate. That came about, the photographer, her name was Camila. She reached out to me via Instagram. I’m a photographer, would love to take your photos. I’ll confess, and I told her this, that like, I was a little bit concerned ’cause I’ve gotten some creepy messages on Instagram before asking for pictures. So I immediately was like, okay, what is this? So I looked at her account and I saw she was verified. I’m like, okay, she’s a real person. You never know. And it’s kind of weird, like random that someone’s just ask, like popping into your DMs, asking to take photos of you.
[00:19:13] But then I saw she had shot for Time magazine. She did President Biden and Vice President Kamala Harris’s shoot for Time magazine. And she shot all these other incredible people. I’m like, okay, I at least need to meet her if she wants to meet me. I think she said a casting agency found my Instagram, but I had a meeting with her and she explained this project.
[00:19:33] It was a continuation of a project she had done last year around the same time for Pride and showing that beauty comes in other shapes and sizes. She was expanding it to abilities. And I was immediately intrigued by the project and deciding, you know what, I’ve never done this before, this could be really fun.
[00:19:51] I didn’t know what she was going to do with it. I know she was going to display them somewhere in New York City around Pride week. That was all I knew. Like I was totally fine. I’m like, yes, absolutely. This sounds great. Let’s do it. So the photo shoot was so fun. It was my first time being a model in a photo shoot and not just like being, you know, myself or something, but channeling like my inner Tyra Banks or something.
[00:20:17] So like, or trying to, I had never, ’cause I just had never done that and it was like very editorial. We were kind of styled like in the Marie Antoinette era and just watching her, like, what I’m wearing is just like fabric that she just draped over me. Like there was no sewing, it was just her draping and shaping this fabric to make it really architectural and beautiful.
[00:20:40] And I just like, I couldn’t believe it. And she just made me so comfortable the whole time. And I was just like, okay, like, whatever happens. Like maybe no one will see these pictures, but I still had a really cool experience, made a, you know, new contact in New York City. And then I was on our family vacation with my cousins and I had just like logged onto Instagram and coincidentally, they all did too.
[00:21:04] And we see my face and like we see ’cause I had shown my cousins what I did. They didn’t see the final work, but I was like, I have to at least show you a little bit of, like give you a sneak peek. And then I saw the images and it was on Vogue Italia’s Instagram account.
[00:21:20] Carole Blueweiss: Wow.
[00:21:21] Jillian Curwin: And to say I dropped my phone in the sand, and like screamed, which I probably shouldn’t do at a beach, but it’s not every day that that happens. And I wasn’t, she didn’t tell me that was happening. So seeing my image there, like I still really can’t believe that that happened. All the images were published there and she also had an art piece written about it in Harper’s Bazaar. Which again, I did not expect. Like I was just completely shocked.
[00:21:55] Because, again, I had never seen a little person in a high fashion magazine like this as a model, not as like someone being interviewed or someone being, you know, featured. Like as just like a model in an editorial, like that was huge. And the fact that it was me just completely blew my mind. ‘Cause I never expected that.
[00:22:16] Carole Blueweiss: What was the theme of the article?
[00:22:19] Jillian Curwin: Basically, the message was every body is beautiful. And beauty is not just one specific type. There were models who were plus size, models who were trans. There were just all these different bodies that are not typically showcased as beautiful by the fashion industry. And so this was to show that every body can be and truly is beautiful. And for me kind of being, or one of the only like visibly disabled people in this shoot was really, I felt really empowered by that.
[00:22:58] Carole Blueweiss: Yeah, I was gonna ask you, how did it make you feel seeing it after it was done?
[00:23:03] Jillian Curwin: Even like now, when I look at the pictures, I’m like, that’s like…part of me is like, that’s not me. It kind of also felt like validation, like, okay, whatever I’m doing, whatever work I’m doing, it’s paying off. ‘Cause if it’s not me, it’s the younger version of me, it’s the next generation of little people. They get to see this. I didn’t get to see someone like me when I was little, but someone else is gonna see it.
[00:23:23] And who knows how that could change their life later on, just being able to see themselves and feel represented in some way, even if it’s just in one photo shoot. I feel really proud that I did it.
[00:23:37] Carole Blueweiss: I have to imagine that, well, especially if it was in Vogue United States, just, I don’t know how people are in Europe, but you said it was in Harper’s, but that edition would sell a lot because most of us aren’t the svelte models that they show. And I always wondered why don’t they don’t just put regular people on there.
[00:23:57] Jillian Curwin: Right. I think there’s still a traditional belief that what sells fashion is tall, thin, like a very specific type, which, I mean, it does. It did for, it’s done for many, many years, but I think there’s still, while we are, it’s getting better, there’s still resistance. So I think they don’t wanna just let that go. I think, and this is me thinking. I could be wrong about why it does seem to be taking longer and why it doesn’t seem to be as accepting. But as from what I take, it seems like there’s all these conversations happening and saying, oh, we’re gonna do this. We should do this. But it’s not happening. Like the conversations are a start, but they need more of these photo shoots. We need to see people with different disabilities, of different sizes. You know, it’s in saying inclusion in fashion so far, I think in terms of size, it’s definitely made a lot of progress, but I think in terms of disability, there’s still a long way to go.
[00:24:57] Carole Blueweiss: Yeah, you really there, you don’t see a lot out there. Which your podcast has made me more aware. Coming to your podcast, what made you decide to do a podcast and how do you think it’s going?
[00:25:10] Jillian Curwin: I think it’s going really well to answer your question, that question, first. So that came about when, for the blog, I started a series called Girl Talk, where I would basically sit down and have a Zoom conversation with a friend or someone in the little person community.
[00:25:27] And I would, then these conversations could go on for like an hour or so. And I would transcribe them and publish them like as an interview. And that just took up a lot of time and it was a lot more tedious ’cause you know, you’re trying to make sure you’re getting every word first before you edit. So you’re still making sure that you’re representing them properly.
[00:25:48] I’m editing their story and I didn’t wanna do that. And I was like, well, I’m already kind of already recording these interviews as a podcast episode. Like it feels like that. So why don’t I just turn that segment of my blog into a podcast? I’ve had some really interesting and insightful people on, not just all little people.
[00:26:08] I talked to other people with different disabilities to get their perspective, especially because with some people they’re not born disabled. So I’m always curious about that transition and what that was like for them, because that’s something I never experienced. Seeing how that has shaped their perception of what it means to be disabled or their definition of it. And waiting to get my mother on. My brother has come on, mom is next.
[00:26:37] Carole Blueweiss: I got her. I got your mom.
[00:26:39] Jillian Curwin: Yes, you got her before I did.
[00:26:42] Carole Blueweiss: I heard the interview with your brother. And your brother is part of your show, right? I mean, he does other things too but he’s part of your production team, right?
[00:26:51] Jillian Curwin: He is. He’s my editor and producer. He’s really good at it.
[00:26:55] Carole Blueweiss: How do you find your guests?
[00:26:57] Jillian Curwin: Some of them are friends that I just know. Other people are, depending if there’s like a certain topic I wanna discuss or I see that they’re talking about a topic I’ll just take a chance and reach out to them and see if they’d be interested. Or in some cases I’ve reached out to someone asking if they wanna talk about something and I’ve gotten a referral to someone else.
[00:27:19] Carole Blueweiss: What makes you decide they have something to talk about that you wanna know more about?
[00:27:24] Jillian Curwin: It’s usually something that I can’t talk about, that I don’t know, that I can learn. There was a case that got dismissed with CVS, basically trying to kinda like dismantle the 504 law. And that’s a very, very vague description of what was really happening, but there’s a Supreme Court case that was happening.
[00:27:44] So I wanted to talk to someone who really knew what was going on because nobody else was talking about it. So I reached out to Rebecca Cokley, who I had on earlier. She works at the Ford Foundation and she referred me to Maria Town who was the President CEO of the American Association of People With Disabilities.
[00:28:02] And that conversation, while it didn’t go as planned because news happened in the moment, it was just, it was so much fun just to learn from her and see how she became who she is, which is this incredible advocate and someone who I’m like trying to aspire to be like one day.
[00:28:21] Carole Blueweiss: When I read that you were doing a podcast and I read a little bit more describing the podcast and I saw the word disability in there, I never thought of your being a little person, I never thought of the word disability associated with you. So that really struck me. And I just wonder, can you talk a little bit about that?
[00:28:43] Jillian Curwin: Sure. It’s interesting you say that because I truthfully didn’t consider myself disabled until relatively later on in life. From what I can remember, I was never really told I was disabled. And I would say that goes all the way to high school. I know I wrote a blog post today about hearing adults talk about me in my senior year of high school and saying that I was disabled and I was just really offended by it. But not realizing that they were right, but also that being labeled disabled is not bad.
[00:29:20] I don’t know necessarily when I became aware of the fact that I was disabled, but I think it was definitely like in the, again, in that middle school age at some point, because at that point, everyone is growing really tall and I’m not growing. And I think that’s when it really started to, that’s like when you’re really finding out who your friends are, and that’s also kind of like where kids can be really mean.
[00:29:44] And so that’s kind of when I was like, I don’t wanna be treated differently because I’m shorter. So like, again, like I didn’t necessarily see being a little person as being disabled, but I knew that I was being treated differently because I was shorter. Any accommodations that I was offered, I’d be like, no, I don’t need it. I don’t want it. I wanna be treated like everybody else.
[00:30:04] And most of the time, like I could get, like I was right. But then there were other times where I would fight back and it was like, no, I actually do need this. There actually are things I can’t do. And it took me long to say yes, there are things I can’t do, but that’s okay.
[00:30:17] Or like, there’s nothing wrong with it. But yeah, I would say really took a long time for me to say, like I’m disabled. And I didn’t realize when. I don’t know when that transition happened, but I think I definitely for the better ’cause like I’m not ashamed to say I’m disabled. And I think that, you know, again, like I wouldn’t be this person that I am if I wasn’t, so.
[00:30:45] Carole Blueweiss: I looked up a little bit about the LPA association, which I’d love for you to talk a little bit about. And I know that’s had a profound influence with you. It stands for little people…
[00:30:56] Jillian Curwin: Little People of America. So yeah, LPA has been a part of my life for as long as I can remember. After I got my diagnosis, the doctor basically said, here. This is LPA. This will tell you everything that I can’t tell you to my parents. And my mom actually went like the first LPA event that happened. My mom only went like, I just need to learn. ‘Cause I was also the first little person she got to know. So she had no clue. And also being the first child, you know, I just really just threw her right in the deep end with that, with parenting.
[00:31:30] So yeah, so it’s been a part of my life for as long as I can remember. And during those times it would kind of just mean to me a week or weekend of normalcy because everybody’s little. All my friends are little, almost all the adults are little. There are average height kids and parents there as well, but no one is staring. No one is making you feel different or less than. Like you’re able to have conversations with someone’s looking at them in the eye. They’re not looking down at you.
[00:32:00] Carole Blueweiss: I’m curious how you feel almost physically and emotionally, just by virtue of the fact that there are other people that are at your height.
[00:32:08] Jillian Curwin: It’s like, okay, this is where I can be myself. I’m not being made to feel like I have to try to be something or someone I can’t. Things that are made more accessible. Again, like there’s things that I can do. And there’s no real feeling of being left out because there is nothing that separates me from my average height friends who they’re all average height, they all can keep up with each other. And I can’t.
[00:32:33] I think coming back as we’ve been all separated due to the pandemic, I think coming back will be a really powerful experience just because we’ve all been away for so long and are all missing that community. And that sense of normalcy and that sense of just being somewhere where you belong. That’ll be a really powerful moment when that happens.
[00:32:59] Carole Blueweiss: What are some of your biggest challenges when you’re out there and especially in New York City, it’s not known to be a very accessible place.
[00:33:06] Jillian Curwin: No. So, bathrooms are a big one. A bathroom’s toilet is designed to be handicapped accessible. It’s often too high that I have to kind of like climb up onto the toilet because they’re designed to be accessible for people in wheelchairs, which is great, but like what they need and what I need is different.
[00:33:25] And same thing with the sinks. They’ll make them higher so a wheelchair can go under, which is great and that does need to happen, but then it’s too high and it’s too far back that I can’t reach.
[00:33:37] Carole Blueweiss: So what do you do about that? How do you manage?
[00:33:41] Jillian Curwin: Depends on the situation. And like just the configuration of the bathroom and how crowded it is, because I think there is nothing more humiliating than like going to use a public bathroom and not being able to wash your hands.
[00:33:55] And I don’t think people, average height people, realize that that’s something that we have to deal with. Or to like, have to put our purse on the floor, ’cause we can’t reach the hooks. But for the sinks, I’ll either climb up on the counter and shimmy my way up just enough far, like close enough, I can reach this faucet.
[00:34:14] I almost always have hand sanitizer with me. And that was a pre-pandemic thing that I would just do because I just, I would never know the situation and sometimes I could reach the faucet, but just could not reach the soap or I would have to like, if I just forgot it, you know, I’d have to like just kind of embarrassing, like leave the bathroom and find hand sanitizer somewhere or find some other place to wash my hands.
[00:34:36] People are not necessarily willing to help you wash your hands. At least that’s been my experience. They don’t seem to get it that I just can’t reach. And like, I just need you to give me some soap or turn on the faucet for me.
[00:34:49] Carole Blueweiss: Or get the towels, right, the paper towels.
[00:34:51] Jillian Curwin: Right. Or get the towels or anything like that. In those moments, my disability is an inconvenience for them and it’s just, they don’t wanna deal with it.
[00:34:59] Carole Blueweiss: Well, after listening to your podcasts, I am so aware now of the height of almost everything now and I have to say, you know, I remember you talked once with someone about it’s just as easy for them to design for all heights. Why does it have to be the average height? Average people can bend down, bend their knees and still have access.
[00:35:23] Jillian Curwin: Right. And also like, even in the case of making the wheelchair accessible sink, if you turned it sideways so that way the faucet, instead of facing the back is facing on the side, then I can still reach it.
[00:35:39] I’m able to reach it and it’s still high enough for a wheelchair to get under. So I think when making things in terms of design and making things accessible, often people are just looking for the easiest solution and not necessarily the solution that works for the biggest market. I think it’s just what they can say is look at us, we made something accessible. We check the box when it’s not necessarily the best solution.
[00:36:05] Carole Blueweiss: The idea that as simply as putting a sink in a certain angle can help someone have access to the sink.
[00:36:15] Jillian Curwin: Right. And it’s something that you wouldn’t think of, but as soon as it comes to you, you’re like, oh my gosh, why didn’t I think of it sooner? ‘Cause again, it never affected how my brother, who’s average height could use the sink, never impacted his ability to wash his hands. It just made it easier for me to do it for myself and not necessarily have to have a stool, which would get in both of our way.
[00:36:37] Carole Blueweiss: Yeah. This is kind of a random question, but like in your synagogue, when you were in Hebrew School, did you feel like there that you had, that they were mindful of making it easier for you?
[00:36:49] Jillian Curwin: From what I can remember, it’s been many years since I’ve been in that building. When I was younger, I definitely couldn’t reach the sink. Someone would be able to come help me or I think we had the stool in there at all times. In terms of how I was treated, I was one of two girls in a class of like 10, 11 boys.
[00:37:10] So I was treated literally like one of the guys, which was kind of great, ’cause it’s kinda like how I always wanted to be treated. If I needed something or if I needed help with anything, they would do it. They’d make fun of me for it, but they would do it. They could make fun of me, but with something like from like a really good friend group.
[00:37:30] Carole Blueweiss: So is there a difference between the way some people could make fun of you versus other people that are more malicious or more obnoxious?
[00:37:37] Jillian Curwin: Yeah, like my brother is, he is really funny and he’ll tell good joke if there’s one to be told. Often at my expense. I say when he does the standup routine, I just want royalties and front row seats, but he can make fun of me all he wants. But I know at the end of the day, if anybody else does it, he has my back 100 percent. And it’s the same thing what I do have with the people who I am friends with. And some of them I’ve been friends with since I was like three, we can make fun, ’cause I’m the first to make a joke at myself if something funny happens and it’s because I’m a little person or any other reason.
[00:38:13] Carole Blueweiss: Is there an example of something that comes to mind that you remember that was really funny?
[00:38:19] Jillian Curwin: Here’s a story. So it’s like my best friend who I’m still best friends with to this day, we were five years old and it was around Easter time. So her mom had bought us dye to dye Easter eggs. I had never done it before. And I thought this was really cool. Her mom had brought the wrong dye.
[00:38:34] So like acrylic or oil based dye that is not easily, can wash off. So we filled up the bathtub. Like made a bubble bath just so we could wash our hands and I guess it was high enough that I needed a stool to be able to bend over to get my hands in the water. And I guess I bent over too far because then I fell in.
[00:38:58] Carole Blueweiss: Oh, no.
[00:38:58] Jillian Curwin: And to this day we still talk about it and laugh about it. And we’re like mad at ourselves that we didn’t take pictures of this moment because it was so funny. ‘Cause we were all kind of like, what do we do? Like, she’s in, like what do we do now? So like, things like that, like that’s definitely a vivid one of like when I was younger of friends, like making fun of me.
[00:39:20] Carole Blueweiss: That kind of reminds me of when you spoke about, I think it was your first career as a personal trainer or you wanted to be a personal trainer in college and you were, I think interning, and you were working in a very interesting environment with big, big men. I remember you described it as, I don’t know if that’s accurate, but in my imagination it was like a lot of strong men lifting weights. And what was your role and what was it like to be in that environment?
[00:39:46] Jillian Curwin: I was a student athletic trainer. That came about just ’cause I had done it in high school because I always wanted to be on a sports team and couldn’t play. And I had managed sports in middle school. My dad taught me how to manage my softball team. Like keeping score the old fashioned way with paper and pen that nobody does anymore. But he wanted to make sure I knew how to do it. So I wanted to do it in college. At first it was just a hobby. And I liked football so I worked with the football team at Tulane, where I started my collegiate career. I got thrown right in. They were like, okay, pick up this cooler. We’re bringing it across the field. And I’m like, okay…sure. And like, yeah, like my introduction to meeting the team was like, weighing them all in because I was just like this, like, you’re gonna learn their names at least.
[00:40:34] And like, be able to put like, this is the fastest way for you to learn who these guys are,. But yeah, right away it was okay. I don’t know if they were thinking like, let’s see if she can do it first, but there was never no asking like, Jill, can you do this? Or I don’t think Jill you should do this. It was let’s try it. Let’s see what works. Let’s see what doesn’t. And yeah, it was kind of nice that like on campus to have these guys I know who’d have my back. I still call them my boys. It’s been years. I fell in love with it. And I loved that environment.
[00:41:03] Carole Blueweiss: Have you been to physical therapy for any specific issues that have to do with being a little person?
[00:41:10] Jillian Curwin: Yes. I’ve had both of my legs straightened. They were straightened at different times. One we knew, or they knew pretty early on when I was very little that it would have to be straightened. We could see that it clearly did not look like the other, did not look like it should. So that one, we had straightened when I was five years old.
[00:41:30] And then I had some, like other surgeries to do like tonsils and adenoids, which are also common for little people. And then around sixth grade, I started having like chronic ankle pain and nothing the doctors had tried was working. Like I wore a boot. We tried easing up on my physical activity. We tried other things as well.
[00:41:52] I saw and it took like two other doctors to give their opinions before finally my doctor said, okay, we’ll do surgery. And it was what was needed to be done. That was, I think the only time where I needed, like something, a serious of surgery to like, correct something that was going on with me physically.
[00:42:09] Carole Blueweiss: What did they find in your ankles?
[00:42:12] Jillian Curwin: It just needed to be straightened. And I think, I don’t know if he said, like he’s adjusted the bones and he saw that I don’t know if he like cut something out or something, but he’s like the bones needed to move into where they are now. Like there was something that was pushing them that was putting too much stress on them.
[00:42:29] Carole Blueweiss: I actually, as a physical therapist, never worked with anybody. So I didn’t know. That’s why I asked. What do you do for exercise?
[00:42:39] Jillian Curwin: I love going to the gym. I do strength training. I learned that I can run. I don’t like doing it still. And if I’d run, I’d rather be outside than on a treadmill ’cause at least then I’m going somewhere. But my favorite thing to do right now, and you can see it behind me is I don’t have the actual Peleton bike because they don’t make it short enough for little people. And I keep hoping that one day that will happen. So I do have like a kids stationary bike that we adapted so I can use the Peloton app and do the rides there. And I use it almost every day. I’m obsessed.
[00:43:15] Carole Blueweiss: That’s great. That’s great. And I see it’s by the window, which is even greater.
[00:43:20] Jillian Curwin: Yeah it’s nice.
[00:43:21] Carole Blueweiss: Yeah. Do you notice people staring at you when you’re in public places? What’s that been like for you?
[00:43:28] Jillian Curwin: Yes. You definitely notice when people are staring because they don’t try to hide it or they think they’re hiding it, but it’s still very obvious. People will stare. People will point. People will try to take pictures on their phones. And again, nobody holds their phones straight up and down when they’re texting. So like, if you’re doing that and it’s pointed towards me, I know that you’re taking a picture. You’re not being slick in that way.
[00:43:57] It kind of depends on the situation. Like with an adult again, granted, I do know that like, I might be the first little person they meet, but again, I still expect them to know how to treat a person. So I either will make eye contact with them until they look away because they don’t like it. So why would they think I like it?
[00:44:16] And sometimes if it’s like a kid who I know probably has never seen another little person before, and I know that they just don’t understand why someone their height, ’cause I am kid-sized, is acting like their parents. But they can’t do it. They can’t do things I can do. Especially like when I lived at home and I get in my car that I was driving, like they, that really confuses them. So I understand that. So in those situations again, I kind of look to see how the parent reacts and some parents are really good. Some parents are like, just say hi.
[00:44:48] Carole Blueweiss: And when you say the parents are good, what do you mean? Like what is a good response in your eyes?
[00:44:52] Jillian Curwin: If a child was pointing at me to show their parents be like, “just say hi to her.” It’s not polite to point. I’d rather the parents say, like, go say hi to her. You can ask a question. ‘Cause I’ll always answer. If you’re asking politely, like with a genuine desire to learn, I will always answer any question that anyone asks about being a little person. But then there are other parents who will say like, don’t stare, don’t do that.
[00:45:18] Kind of like still be looking at me or who won’t say anything, or will also like look, point, and stare and do the same thing. Your child’s trying to understand what they’re seeing, ’cause they clearly don’t. So like if you’re helping your child understand in some way or another, whether it’s to treat me like a person or to teach them what a little person or who a little person is, that’s great. If it’s just perpetuating an ignorance, I’m not okay with.
[00:45:46] Carole Blueweiss: Yeah. And I have a feeling that you can sense very easily. You know.
[00:45:51] Jillian Curwin: You can, yeah. You can tell right away where the parent is. What’s gonna happen.
[00:45:56] Carole Blueweiss: Yeah. And what about adults? What’s been your, what I know you’ve told some stories on your podcast that were just horrifying and I don’t know what you feel comfortable sharing, but is there something out there that might be an example of how not to behave?
[00:46:11] Jillian Curwin: I mean, I can think of several examples of like how not to be behave. I think the one example that I’d be comfortable talking about here was when I’m walking around in New York City and I know that like go straight ahead. I kind of like ignore people who are gonna point and stare and laugh, or like try to take pictures.
[00:46:28] Like just don’t give them my attention. They’re not worth my time. So I’m like very conditioned to do that. And so is my mom. She’s been around me my whole life. She knows that this is kind of something that I just have to deal with. But one time we were walking around with a group of friends and my brother was with us and this guy was walking towards us and I immediately knew he was looking at me, ’cause again, I can tell ’cause people are not so slick at hiding it.
[00:46:56] So I just kept walking. I was like, I’m just gonna ignore it. Not gonna give him my attention, not gonna give him any…’cause like if I do that, then they’ve won. Regardless of what they’re thinking, like I’ve confirmed whatever things they’re thinking about me. So if I just don’t give them my time and attention, then doesn’t matter.
[00:47:14] But I guess he had made a move to grab or kiss me, which is not okay. Don’t do that. I didn’t see it. But all I know is that my mom screamed, Ben screaming F you to the guy and I’m like, well, you can’t do that in New York City, but also like, why are you doing that? ‘Cause I didn’t see, like I just ignored this guy.
[00:47:35] So I think, and like the fact that she also, like she’s been in these situations before. And so like for that to happen, it was like, oh, he must have done something that she’s never seen before. So yeah. That’s like one situation that sticks out of just and I don’t know like what would’ve happened if I wasn’t with people, ’cause again, like I wasn’t looking at the guy, I didn’t see it. But like, I don’t know if he would’ve made a move or a bigger move if I was by myself or wasn’t with, surrounded by as many people as I was in that time. It’s kind of like always being on my guard in those situations.
[00:48:11] Carole Blueweiss: Do you feel that your parents in some way prepared you for some of the challenges you’d have as an adult?
[00:48:21] Jillian Curwin: Yes and no. I think they prepared me, you know, for the challenges of adulthood of just like those normal challenges that everybody faces, ’cause they can teach from experience. Like my dad would always say, like insist on being treated like one of the guys, which in some situations is great. But in other situations, I didn’t realize that like I couldn’t be. And that was okay. ‘Cause I used to think if I couldn’t be, then there was something wrong with me. Not necessarily like, no, this is just the reality of I’m a little person and there are some things I can’t do or some things that I have to adapt and modify and to learn how to make things work for me.
[00:49:03] They did teach me, because I’m the daughter of two lawyers, how to be an advocate. And then how to basically like construct an argument, present evidence, and say, this is what I need. This is what I want. And I feel like I learned from the best how to be an advocate for myself and others from them. But I think the biggest thing that I’m don’t necessarily think I could have learned from them is like how to be a disabled person in a very inaccessible world.
[00:49:35] Carole Blueweiss: What about in an elevator? And you have to go to the 50th floor.
[00:49:40] Jillian Curwin: I hope that I can reach, or I hope that someone’s in the elevator with me, or I just jump. I’m on a lower floor of my building, so I don’t have to try. And like, I think I would be able to reach the top floor, the top button. Yeah, I’ve been in elevators where I couldn’t reach the buttons and I’ve had to hope that someone else comes on to push it for me.
[00:49:57] Carole Blueweiss: That would be a New York City problem.
[00:49:59] Jillian Curwin: Oh yeah. That’s a very New York City problem.
[00:50:02] Carole Blueweiss: So speaking of, you know, reaching up, how did you come up with the name of your podcast?
[00:50:08] Jillian Curwin: The blog came first and the blog was also called Always Looking Up and it was just this outlook of yes, being optimistic, being positive, but also the fact that as a little person, just in reality, I am almost always looking up because the world is above me.
[00:50:24] I’m looking up to try to have people make eye contact with me. I now live in a city full of skyscrapers. Everything is just for an average height person. In a literal sense, I’m almost, I’m nearly always looking up. So that’s kind of where it came about. It’s both literal and metaphorical sense of it. And I kind of liked how it sounded.
[00:50:43] Carole Blueweiss: It says so much in so few words. What is it like for you? The feeling of always looking up, do your eyes get tired, your neck get tired? Like what is…?
[00:50:53] Jillian Curwin: Yeah, it can definitely be exhausting. We’re social creatures. We want eye contact. The fact that people just naturally don’t see me, it can be just frustrating emotionally, but also physically ’cause then you’re trying to make yourself louder, to put yourself somehow in their line of sight. But then it’s also that feeling of they’re looking down on you or they’re looking down at you and that doesn’t feel good. Kind of like just a part of my reality.
[00:51:23] Carole Blueweiss: If you are smaller than someone else, and you’re looking up, you’re reminded of, you know, our childhood and adulthood and all those things.
[00:51:29] Jillian Curwin: Right..
[00:51:30] Carole Blueweiss: So you’re saying it almost, it stays with you.
[00:51:33] Jillian Curwin: I’ve accepted it. No one likes to feel like they’re constantly looking up and at the same time being looked down on. Yeah, sometimes it’s just hard, ’cause it’s like, you don’t wanna do it. You wish you didn’t have to do it, but you know, that’s just part of being a little person.
[00:51:48] Carole Blueweiss: And do you ever like think, okay, you know, is there a stool or something I can sit on, just to be a little bit higher so that I don’t have that feeling?
[00:51:58] Jillian Curwin: Yeah, if there’s a stool and we’re sitting in like a communal space and there just happens to be stool there, I’ll sit on it. If it’s high up, same thing. Like I like having conversations sitting at a table ’cause there everyone is a little bit more eye level or like even just sitting down anywhere ’cause then you’re all somewhat eye level, if not all eye level. In those situations where you are standing and there isn’t a stool around, the more people, the smaller you feel. Because there’s more people and they’re able to make eye contact with each other no problem. But everyone has to look down to talk to me.
[00:52:34] Carole Blueweiss: So just the idea of eye contact, you probably are much more sensitive to what it feels like not to have eye contact because it’s just, your eyes can only go to one place at a time. So if there’s bi-levels so to speak, and there’s a conversation going on, you’re the one that’s gonna get left out.
[00:52:52] Jillian Curwin: Exactly. But I know that people not to like excuse it, like they’re not doing it necessarily consciously, but I think that kind of is what makes it more frustrating, is knowing that people aren’t necessarily thinking to look down. ‘Cause we don’t want to, like, I think looking down it’s like, it’s negative.
[00:53:09] It’s looking at, you know, everyone says like, don’t look behind you. It’s in the past. Let it go. The same thing of like looking down, like I think there’s just such a negative connotation with it that we kind of try not to do it. So that compounds onto people just naturally.
[00:53:22] Carole Blueweiss: Does anyone ever, and how do you feel about this, bend down to try to get at your eye level? Like how does that work?
[00:53:29] Jillian Curwin: I’ve had that and if you’re doing it and not treating me like a child, I’m okay with that. That’s how you’re choosing to make eye contact with me and to talk to me. Some ways, that’s better, ’cause it’s like, okay, you’re making an effort. You really wanna talk to me, you wanna look at me, you wanna listen to me.
[00:53:45] If you’re gonna bend down, and you know, pat me on the head and treat me like a child, that I’m not okay with. Then I’d rather you just stand up straight and look down because that’s at least you’re then treating me, like with a little bit more respect.
[00:54:00] Carole Blueweiss: I would love for you to read a little excerpt from one of your writings or your blog.
[00:54:05] Jillian Curwin: You know, every day, like Facebook will show you like what you had posted on this day years ago. So I was in high school 9, 10 years ago, and I had wrote a status dated November 27th, 2012, saying to the adults talking about me, I am right behind you. I can hear everything you’re saying. And no, being four feet tall does not make me disabled. And I remember it was the day we were getting measured for our cap and gowns for graduation, and they didn’t know what they were gonna do for me, which I still don’t know why, because I was getting measured. So it was like, I thought like they could make it right..
[00:54:42] But, looking back. I realize how far I’ve come. And I kind of, so like, I should say like before, like I realized, again, growing up, I didn’t necessarily label myself as disabled and I did have such a negative connotation with the word and while yes, technically speaking, being four feet tall does not make me disabled, being a little person does.
[00:55:03] And it took me a little bit of time after that to realize that. So I wrote to finish, looking back, I realized how far I’ve come. Moreover, I realized how much society and the environment have remained the same. Now in 2021, I don’t view disabled as a bad word. It is simply one word that describes who I am.
[00:55:22] It doesn’t define me. Yet there are times where society and the environment still makes me feel that my disability is an inconvenience. Accepting that I am disabled means understanding that there have been, and perhaps always will be, barriers that I have to overcome, visible and invisible barriers constructed by society in an environment that is inherently ableist.
[00:55:42] I can’t change who I am. I’m a little person. I’m a disabled person. I am me. What can and needs to change is society’s perception of what being disabled truly means. Disability is beautiful. Disability is dynamic. Disability is powerful. Disability is not a burden.
[00:55:57] Carole Blueweiss: Hmm, beautiful. For those parents or little people out there who are listening, young or old, thinking, you know, I guess the youngest of the youngest, do you have anything you’d like them to take away from what you’ve experienced yourself?
[00:56:19] Jillian Curwin: I would say that being a little person, it’s not gonna be easy. It’s definitely hard. It’s definitely challenging. The world is not designed for us and doesn’t wanna seem to adapt for us. There’s nothing wrong with being a little person. ‘Cause I think perception that disability is wrong, that disability is not good. And it’s like, no, disability can be so much more and being a little person in an average height world can be an amazing thing.
[00:56:48] You’re seeing things in a different perspective. You are inherently adaptable. You’re inherently creative, you’re inherently resourceful. And that there is a network of people to reach out to. Are people going to point and stare? Yes. Are they doing it because they don’t understand? Yes. Are they doing it because they’re ignorant? Yes. We’re gonna have to deal with it. I think that is part of life that as much as I wish that it wasn’t a part of my life ,it’s something I know I’m probably never going to be able to fully escape from.
[00:57:23] But the negative experiences that I’ve had of being a little person or finding myself in a bathroom and not being able to wash my hands and having to think of what to do have made me a stronger person, have made me definitely into a bigger advocate for myself in the community.
[00:57:41] And that it’s okay. Most little people like myself are born to average height parents. And my parents definitely didn’t have a clue. And just to say that it’s okay. There’s a lot of resources out there and it is something that little people have come before and little people come after. So in the moment, like it’s okay.
[00:58:03] Carole Blueweiss: Where do you see yourself 20 years from now?
[00:58:07] Jillian Curwin: Hope to be working in some business, whether it’s like in fitness or fashion or entertainment, being an advocate for people with disabilities and for the little person community, and working to really make those spaces accessible. I think that, like, there are some people I look up to like Rebecca Cokley, who’s been an activist and an advocate her whole life, finding a way to make that a true part of my career and not just on my social media. And not just put my after hours thing, to find a way to make that part of my full-time job. ‘Cause I love doing it. And I find I’m really passionate about it and think that that’s the way I can truly make a difference and leave an impacts.
[00:58:52] Carole Blueweiss: Yeah. And your podcast definitely is good resume for you because you can hear your passion and your humor and your just directness and you’re right on this, whatever that means. And you care, it comes out.
[00:59:09] Jillian Curwin: You have me remembering things that I hadn’t talked about in years, which is really nice. So this has been a great conversation.
[00:59:14] Carole Blueweiss: I’m just very grateful that you agreed to this interview and agreed to answer some of my challenging questions. And I know that people can appreciate hearing what you had to say. I know that.
[00:59:25] Jillian Curwin: Yeah, thank you. Thank you for having me on. This was such, it was just such a pleasure to talk to you. And again, like I do this ’cause I hope for parents who have a little person child, or for a little person themselves, regardless of what age you are, I hope that something resonates with them. So yeah, so anytime, happy to talk about being a little person in an average height world.
[00:59:48] Carole Blueweiss: Great. And guess what I want to hear at the very end of my podcast? Could you do me the honors?
[00:59:53] Jillian Curwin: Sure. I think I know what you want. This is my sign off that I always give. Height is just a number, not a limit.
[01:00:12] Carole Blueweiss: The link to Jillian’s podcast, Always Looking Up, can be found in the show notes, along with the striking photos of her Disney princesses that she took for her super secret Disney project. You don’t wanna miss seeing them.
[01:00:25] And thank you for listening. Tune in to the next episode of Wisdom Shared where I will interview both Jillian and Audrey. You will get to listen in as mother and daughter speak with each other, connecting, sharing memories and advice.
[01:00:39] Jillian Curwin: Yeah, I’ve called her my best friend for 26 years. And even though I drive her crazy probably more than she drives me crazy, at the end of the day, she’s the person I go to for anything and everything.
[01:00:53] Audrey Curwin: She’s always been everybody’s best cheerleader whenever she feels that somebody needs that extra push, that extra support, she’s like the go-to girl, ’cause she’s there 100%. You know, I’m really proud of her for being that kind of kid. And she’s always been that way, like always, and I love her.
