Episode 38 Transcript

Published: Thursday March 14, 2024

Jillian (Ilana) Curwin: Dwarfism Champion and Advocate

Height is Just a Number: Welcome Jillian (Ilana) Curwin


Alycia Anderson: Welcome to Pushing Forward. With Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience and finding success against all odds. We are creating a collective community that believes that all things are possible for all people.

Open hearts. Clear paths. Let’s go.

Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson.

I’m so excited. We’ve got Jillian Curwin with us today.

She’s beautiful. She’s amazing. She is a writer, a content creator, an advocate for dwarfism and disability awareness. She lives in New York. She’s got a podcast called Always Looking Up.

We’re going to talk about that a little bit.

Thank you so much for your time. I’m thrilled to meet you. You are one of the ones in the advocacy space that is shining a bright light on all of this beautiful work.

Thank you for your time today.

Jillian Curwin: My gosh, I’m like gonna cry. Thank you. I… See, I’m used to being on the other end of this, so I am so excited to talk with you.

Yeah, you kind of like said it all there. I have a podcast Always Looking Up. It’s… we’re going into our third year, which I’m really excited about.

Where I talk about living in a world that wasn’t necessarily designed for us, whether that’s as a little person, as a person with a disability, as someone who may be disability adjacent, or someone who’s like an ally to the community. So, talking about that because there are many ways in which the world we live in is not designed for us.

I’m also, like you said, a content creator. I didn’t realize that my content was having that impact, so thank you. And I’m a writer. I used to write on my blog. I was a lot more active and that has kind of taking a hiatus for me to write on other platforms.

Always Looking Up is the platform for the blog and of course the podcast came from… it was 2019, the September issue of British Vogue, and I think Meghan Markle was like the guest editor. And so, she put… she got to choose who’s gonna be on the cover and she chose 15… I think it was 15 forces for change, and one of them was Sinead Burke.

And so, seeing that magazine cover… seeing someone who looked like me on the cover of Vogue! I was like I could do this. OK. This is like… it was kind of like my way to copy, like this is the moment.

So, it’s interesting you said it was like Vogue.

Alycia Anderson: So, speaking of Always Looking Up, let’s just jump into that. And then I do want to look in the rearview mirror and talk about your life a little bit.

Can you talk a little bit about like your motivation for starting your podcast and, you know, kind of getting that advocacy out from that platform?

Jillian Curwin: Sure. So I started the podcast back in May 2021, and it kind of came from somewhere… So, on the blog I wanted to do the series where I interviewed friends with dwarfism as well as a couple of allies and friends in the community at the time.

And I would transcribe the interviews and as we both know, transcribing is a very lengthy process. But as well, I was happy because I wanted to have these conversations put out there. And, I guess I did like around like four or five and I kind of felt like that their voices were being lost in the transcription… and then the edit, like it wasn’t… something was missing. And I… but I loved the conversations that I was having.

And so, I said… I’m like…, this is at the time, you know, we were a year into COVID, and podcasts are really becoming a thing. And, I was kind of like, I think I want to do this. I really think that there’s, you know, in the disability space, people with dwarfism voices are not always heard in the world at large. People with dwarfism’s voices aren’t always heard. So, I was like, why not?

And so, then I reached out to my brother, my younger brother, who was at the time majoring in video, television and film at Northwestern. He’s since graduated… very proud of him. And because I knew like he would have the technical ability that I still lack, to say, hey, I have this idea. Would you be interested in being my editor? Like, if you have the time? And… I think it was like from what I remember it was like a very quick yes.

So first… so having that yes, and know like, OK, like this could be possible… like ask some friends who like how did you.. who were in the podcasting space… like how did you do this? They kind of gave me the information, and so then I kind of like built it out from there, and really just started reaching out to friends.

And my best friend was my first guest. She’s been my friend now for over… I guess, like almost 20 years. It’ll be like 20 years in next year. I’ll be like, hey, like can we, like have a conversation, and it was really…, it was fun and like for putting that episode… those episodes out I was like, OK, this… like, yeah, it was their voice that was missing in the converse… and like what I was doing with the blog or what I was trying to do.

And, It’s just kind of really grown and evolved from there, beyond my expectations if I’m completely honest. It was really.., I didn’t…, and I’m very grateful for every guest who’s come on who’s given their time to speak with me, and who’s trusted me… to kind of with the platform that I’ve built… to have their voice be heard on it. And, I’ve had to talk to people in all different industries, the different disabilities… I’ve gotten to talk to some people that I’ve truly looked up to for many, many years and always look up to. And…

Alycia Anderson: You should be proud of it. You’re really good at it, and your guests are super diverse and I think that you’re creating space and opening up communication for, you know, the greater education of the disabled path. So, I think… and you know, and that’s what I’m trying to do with this podcast as well.

So, you’re doing a really, really great job. Over 100 episodes in like, it’s very good. Yeah. Congratulations on that. Like, I’m 35 episodes in and I…

And you know what? The same things been happening to me, too. This is the conversation that people really want to have and hear and be involved in, and when you’re delivering a product like you are, that’s very… it’s inviting, you know, and you…, you leave your listeners wanting more. So, I think it’s really great and congratulations on your success there.

Can I … can I…? You always ask… I’m gonna… I want to kind of turn around your one…

Jillian Curwin: Yeah.

Alycia Anderson: That you ask all your guests… What is disability to you? Did I ask it correctly?

Jillian Curwin: Yeah, I phrase it like, how do you define…

Alycia Anderson: There it is.

Jillian Curwin: …being disabled… being a little person? And that came out because as you know, as those in the community know, being disabled is a very unique and individual experience and to every individual, it means something completely different. So I like to ask my guests like, what does it mean to them, and also to kind of like allow them to kind of… I almost like take that word back as the right phrasing, but kind of like… just like own this word that society tries to claim.

So how do I define being disabled?

I consider it’s like… it’s… it’s something that I don’t know anything else.

I was born a little person. I didn’t have an experience transitioning from non-disabled to disabled, but I did have like I guess like a moment of like kind of coming into my disability identity which we could talk about I guess in a little bit. But I mean… in simple… like very simple terms like I see it’s like yeah, there are things I can’t do. There will always be things I can’t do, and that doesn’t make me less than.

And you’re like…, it’s like I say, height is just a number, not a limit because for my… in my world and my disability, height is… always tries to be a limit.

Height, you know, we live in a world with height requirements. You must be this tall to ride this ride. You must be, you know, this tall to be in this profession. You must be this tall to sit in certain seats. So… and for me, it’s kind of saying, yeah, there’s a lot of things I can’t do at this height, but that doesn’t mean that there’s nothing I can do.

That doesn’t mean that I’m truly limited.

There are things that I do differently because of my height because I’m disabled and that doesn’t make it less than. That doesn’t make it inferior. That just makes it not like me.

Alycia Anderson: And you know what? Like I… my disability is congenital too. So like I… like, I love what you just said, that you were born with your disability but there was a moment. Right? There’s a moment of realization.

Jillian Curwin: Yeah.

Alycia Anderson: It happened to me, too, where you realize? Ohh. OK, there is this thing that’s in my life and it… it is different, and it is part of who I am.

And when you ask me that question, to start to think about it my answer was virtually the same, which is, it’s just me. Being disabled is me.

Jillian Curwin: Right.

Alycia Anderson: You know, so, I think you and I have a lot in common coming from the path of our disabilities are different, but from like…, like growing up with a disability. I think we probably ran into a lot of the same things.

I heard you say dwarf. I heard you say little person. Like, what is the appropriate language?

Jillian Curwin: Medically speaking, like my diagnosis is achondroplasia dwarfism. Very long thing to say. Like I’m… like technically, I get achondroplastic dwarf. Very long thing to say. So I go by… a lot of people I know in the community go by dwarf. We’re people with dwarfism. We are a dwarf. That is correct.

Little person is much more… in how I see it.. it’s a simpler way and it also avoids the reference that people have to mythological characters such as like Snow White and the Seven Dwarfs.

Even though I am a dwarf, but little person just is sometimes simpler.

But those are all correct, because I feel like people… like you said… like there’s always like this fear of like saying the wrong thing or thinking that the correct thing sounds wrong, but dwarf, little person…that’s… those are correct terms.

Alycia Anderson: And so how does somebody out there… if their… they come into contact with somebody who is a drawer, a dwarf? Excuse me…

Jillian Curwin: Mmm hmm.

Alycia Anderson: What’s the proper thing to say?

Jillian Curwin: For me, speaking for myself… because I don’t… like you said… like it’s a very individual experience.

Like again… like, “Hi,” and just kind of like treating me like a person.

Alycia Anderson: Totally.

Jillian Curwin: Recognizing that there are going to be people who play and stare and do ask questions, I’m the kind of person where if you ask respectfully and you’re coming from a place of just wanting to know, wanting to understand and wanting to be correct.

Whether you’re a parent with a small child…, whether you are a small child or whether you are just… I’m the first little person you’ve met. If you ask the question, I will answer it because I would rather you not assume and exist in your ignorance.

That being said…, if you don’t do it…, kinda come from a respectful place… then I may not be so nice.

Alycia Anderson: Yeah. Thank you for kind of going down that path.

Jillian Curwin: Mmm hmm.

Alycia Anderson: I think that is kinda important to talk about.

This is a perfect time to take a quick break.

You were listening to Pushing Forward with Alycia and we will be right back.


Alycia Anderson: Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson.

I’m so excited. We’ve got Jillian Curwin with us today. She is a writer, a content creator, an advocate for dwarfism and disability awareness.

Your advocacy, is focused a lot on fashion, entertainment, representation in the media and beyond.

How did you get there?

Jillian Curwin: So, I talked about the British Vogue issue. I’ve always been interested in fashion for like, I guess, like since elementary school. And, I watched like… some: Little Pond, Project Runway and Bravo and the footage area.

And, I think you know… and like growing up, obviously the fashion industry does not design as you know, for people with disabilities, and so with talking about is at first you know the blog when it was… when I first saw it was purely focused on addressing representation and in fashion from the little person’s perspective. I hadn’t yet come into my disability identity really fully yet.

And, also this was pre-March 2020, so I would talk about, you know, being…, you know, buying… when I bought jeans and I owned, like multiple pairs of jeans that all fit me. Like once I got them altered, but they… then even once they were altered, fit, which was kind of rare for me.

Talking about reviewing fashion weeks and saying, could this garment work on a little person if we just cut the hem, do we lose the garment? To kind of say we can have these clothes and it will still work. It’ll still be in fashion.

How the runway was… how the designer designed it, but like we could see it on a dwarf model, things like that.

So, then March 2020, COVID starts. We’re all in lockdown. The fashion industry is kind of at a standstill. There’s no fashion shows or anything like that, and I still wanted to keep fighting, still wanted to be, you know, in this space and see what more it could be.

And so, I just started talking about other issues impacting the dwarfism community, and the disabled community. Again, even though I was like when I said that cause like again I said it for like come into my identity yet as a disabled person.

And then coming to New York City the next year, finding the disabled community, I’d really kind of come into that identity as being around differently disabled people in the sense that like not just little people.

And seeing their world and kind of getting to have these conversations that I wasn’t really having in the dwarfism community at that time.

And so like, realize, oh, right, I am… to see that I have a place here. I have a voice here, but also like…, there’s this great opportunity to work with this community that is so… as you know, so beautiful, so diverse and so dynamic… and it’s just so powerful and like badass.

So, well, that’s kind of like how I guess it’s evolved. It’s like coming… and like not… and like learning from them and people in the community that I call like my best friends and also people look up to like how to really like not be afraid to speak out on certain issues.

I think that’s I think the biggest for me like the most measurable change that I think I’ve made in my advocacy is being less afraid to speak out.

But there’s still so much to go, and how many young girls still in 2024, you know, in the year of the Barbie movie.

We… don’t have their Barbie doll that looks like them. Don’t have their Disney Princess that looks like them. Don’t see themselves when they watch their favorite TV shows, their favorite films.

And it’s like, what are we waiting for?

And it might be that we have to create them ourselves and then wait for the business to catch up, but we shouldn’t have to do that.

Alycia Anderson: I remember when I first got my first wheelchair Barbie, which was when I was 40. I’m old, a lot older than you, and that felt… I didn’t even realize how good that would feel. And then I got it for a Christmas present I was like, Oh my God, that… that’s a feeling I’ve never had.

So, Barbie, if you’re listening to this, hopefully…

Jillian Curwin: Right!

Alycia Anderson: Like…, where’s your Barbie? Where’s the dwarf Barbie?

Jillian Curwin: She just outted us… it’s like, where is… like again…like, where is she?

Like, sometimes we’ll see moments of disability representation, and the instant there’s pushback or criticism from people who are choosing to stay in their ignorance, or like who just don’t understand, then those who are trying to like, have their representation will pull back.

We’ll say, OK, we did it. We tried it. People didn’t like it. We’re gonna pull back.

Alycia Anderson: I think it goes back to that word that you mentioned when you’re coming into yourself, which I have the same challenges is pushing through fear and keeping keep the momentum going.

Even when it feels like people are. Like oh, maybe. That’s not right. Oh uh oh… like even though… you keep pushing through the fear and then this, this beautiful movement that we’re also… it…, it keeps moving forward if we can like push away that fear, which is for me, it’s everywhere, every single day I do this work.

Today, am I going to be too afraid of it? Or not? Or, am I gonna be brave, you know? So…

Jillian Curwin: You know, we can only hope that these brands who are like willing to take that step… that have taken that first step… keep going.

Because if not, then it’s like why!?! You’re hurting us, you’re not hurting your company, you’re hurting us.

Alycia Anderson: And you’re doing really good work in it. Like…

Jillian Curwin: Thank you. So are you.

Alycia Anderson: I think that your voice and your platform is so needed and so necessary and so beautiful, and I think it’s… you exude women and women empowerment and…

Jillian Curwin: Thank you.

Alycia Anderson: Thank you for coming into my life!

Jillian Curwin: Thank you. I think you… you’re such like a rey of light in this community as well.

I’ve like… and when I like came across your profile, I was immediately like, who is she?

Why don’t I follow her yet? Because she’s a boss babe. She’s doing such amazing things. And you…, you really… you truly are.

Alycia Anderson: Thank you. I appreciate that so much.

Jillian Curwin: Truly a pleasure. Thank you for having me on.

Alycia Anderson: OK, but the one last thing…

Jillian Curwin: Yes!

Alycia Anderson: That we want on the podcast every time. What is your pushing forward moment?

What is your advice? Mantra?

A little nugget of inspiration that you can gift out to our audience.

Jillian Curwin: I guess I’ll say what I always have my guests say.

Which I’ll have you say when you come on my podcast.

It’s that…, you know, we said at the beginning.

Like… height is just a number, not a limit.

So just… that’s it.

Alycia Anderson: Thank you so much for your time today. I really appreciate it.

I cannot wait to put this conversation in the podcast universe.

Thank you so much to our pushing forward community for jumping in on this conversation.

We appreciate you.

And, this has been Pushing Forward with Alycia, and that is how we roll on this podcast.