Episode 39: From Runway to Real Life: Jillian Curwin on Fashion, Identity, and Disability

Episode 39 Show Notes

Jillian Curwin, Director of Communications for the Mascots Matter Campaign, is an advocate, storyteller, and content creator reshaping the conversation around disability and representation. 

Jillian shares her experience as a little person navigating an often inaccessible world, particularly in the fashion industry. She reflects on what sparked her advocacy, how misperceptions about disability motivated her, and why authentic representation matters. Jillian also talks about embracing a disabled identity, the value of lived experience, and the role of community in fostering self-acceptance and empowerment.

Her story offers fresh perspectives on adaptive fashion, confidence, and finding one’s voice, both in the disability community and beyond. Listeners will gain valuable insights that challenge perceptions of disability and redefine what it means to be seen and heard.

Connect with Jillian Curwin on LinkedIn and her website.

Transcript

Erin Hawley:
Hey, everyone. Welcome to another episode of Everything You Know About Disability is Wrong. Today on the show, we have Jillian Curwin.

Lily Newton:
Jillian is an advocate, storyteller, and content creator with a strong voice for access and representation. As a little person, she has experienced firsthand the challenges of navigating industries that often overlook people with disabilities, especially the fashion world. Her advocacy stems from a personal journey of frustration, reflection, and ultimately, action. Welcome to the show, Jillian. Thanks for being here.

Jillian Curwin:
Thank you for having me. I'm so excited to be talking with you.

Lily Newton:
Likewise. Before we get into the questions, which I'm very excited for, let's go ahead and do our audio descriptions. This is Lily speaking. I am a mixed race person with white skin and green eyes, and my hair is, cut into a brand new bob that I just got. And it is split down the middle half blonde, half brown Cruella de Vil style. And then behind me, there's a bunch of disability activist books. Erin, take it away.

Erin Hawley:
Hi. This is Erin speaking. I have red hair, white skin, and I'm wearing a green shirt. And I'm sitting in my bedroom, and my closet is behind me. So I'll pass it to Jillian.

Jillian Curwin:
This is Jillian speaking. I am a white woman with brown shoulder length hair. I am wearing a blue top, long sleeve top, and behind me kind of blurred out is my stationary bike as well as my bed. And I'm sitting in my apartment in New York City.

Lily Newton:
Awesome. Thanks so much, Jillian. Alright. Let's let's get into it.

Jillian Curwin:
Yes. Let's.

Erin Hawley:
And your first question we always ask is, the main podcast is Everything You Know About Disability is Wrong, and what do people get wrong about you?

Jillian Curwin:
About me or about my disability? Okay. I think what people get wrong about me as a little person or about little people in general is that we are disabled. I think there's just this big misconception out there as to what a person with dwarfism is, where do we fit into society's classification of, like, non disabled versus disabled. And the truth of the matter is, and, you know, very simply is that being a little person means I am disabled.

Lily Newton:
What an interesting answer. I we have not heard yet, and I, that's such a interesting point to hear because we get that answer a lot when people have, like, non apparent disabilities. And I know I felt similarly about, like, being autistic. But you bring up such an important point of, like, it's almost like people want to see, like, what are your deficits? And that's what like, there there's something, like, necessary to call it disability when we're, like, we're talking about access. And, yes, like, you have a you need access to things.

Jillian Curwin:
100%. And it is, like, so frustrating because I think also people see me as, like, oh, you're just short. Like, that's not that doesn't make you disabled. And it's like, that is the most visible symptom of, you know, being a person with dwarfism, but there's a lot more to it than that. And then, you know, compounded on that, we have the representations of little per of little people in the media, which are not the most positive, which I think definitely plays into how society both perceives and treats, you know, people with dwarfism as, I mean, that's a whole that's a lot. We can we can go there if you want. That's a whole lot of that's a lot there with that one.

Lily Newton:
Well, I mean, it's important, though. It's it's like the representation, of course, and I know we'll get into that in this episode. Also the, like, just, people like to think of disability as like that exactly what you said, like, what is the most visible part? And often do forget that there's like, this is why it's important to actually get to know people and, like, get to know what their experience is. Because very similar, we had, the comedian Pamela on our, show, and she has Tourette's, and she was talking about, like, everything you know about Tourette's is wrong. Like, there's so much more than just the stuff you see, like, stereotypically, and that was eye opening to me. And I think, yeah, like, there's there's more not that you need to, like, describe your symptoms to people. But that's a really interesting there's just there's more to it than what you see.

Jillian Curwin:
Exactly. 

Lily Newton:
Exactly. So this kind of came up in the bio, but you have talked about that your advocacy began from a place of frustration, which is very relatable. Can you kind of tell us about that turning point and when you realized that you wanted to use your voice as a tool for change?

Jillian Curwin:
Sure. So I think, you know, being born disabled, I've had to, you know, learn kind of at a young you're not not kind of, like, at a young age how to advocate for myself, trying to navigate in this world that, you know, is structurally and inherently ableist. And it's also like I didn't understand that then, but yet also having to be able to figure out how to advocate for myself in that world as I'm trying to understand how I'm being perceived and also just trying to understand, you know, my own body and my kind of how I take up space and, you know, what it means for me to be a little person, to be a disabled person. So that advocacy has always, like, been inherent. My parents are lawyers, so I watch them advocate for, you know, during their nine to five, but as well as, like, advocate for me in terms of, like, getting things my five zero four handled just like that in school. So from them, I learned. And then as I grew older, I definitely, like there were, like, moments, like, little moments where I kind of, like, stepped into advocacy more. I was definitely aware or becoming more aware of, like, things that I didn't like or did not think was fair.

I would try to, you know, call it out or do what I could to change it, but it wasn't I wouldn't call those efforts advocacy. I think what was really the defining moment was in 2019, December of twenty nineteen, it was announced that, Meghan Markle, the Duchess of Sussex, was going to be guest editing the September issue, British Vogue, which is if you're in the fashion industry, you know, the September issue is the issue for all the magazines out there. It is, like, the biggest issue of the year. I think some like, they're over I think sometimes they're over, like, 800 pages. Like, they're they're it's it's a big deal. So Meghan Markle was guest editing the September issue, and on the cover, she was featuring 15 Forces for Change, and they released, I believe it's 15. 15, like, just incredibly dynamic, empowering women across all industries, that are truly change makers in the world. And one of those women was Sinead Burke, who is a little person.

She's based in Ireland, and she is still is, was and still is, advocating for the fashion industry to be more inclusive for people with disabilities. She's definitely expanded on that with what she's doing right now with tilting the lens, but she's you know, that's, like, where she got her start, and she's really made a name for herself and has, you know, done a lot of good. And so seeing her, though, on the cover was the first time that I, as someone who loves fashion, but also just as a little person, had ever seen myself represented in that way. You know, seeing my body, seeing someone with my body type, seeing my disability being perceived as powerful, being perceived as beautiful, was really kind of like, okay, I can do this. Like, okay, maybe there's, you know, like it was kinda like that, like, permission to, like, okay, let's see, you know, let's see what we can do. And so I took so that came out in September. I remember I was lucky enough to be in Europe at the time, so I was able to get my hands on a physical copy. And when I tell you I carried this magazine issue around with me everywhere, it would like, I brought it anywhere and everywhere I was reading this.

And so I took that time, and then I decided that I was going to start a blog because I thought that was something easy. I thought it was something that I could, you know, update as well as I wanted to. I think it was a way for me to kinda get my voice out. Shaneen had started a blog, so I was kind of, like, following in her footsteps. And so January 2020 started a blog, and it was focused at first purely on fashion. I talked about, you know, my experiences shopping for clothes. I talked about, in fashion week, I kind of commented on my favorite looks and say, like, could they work on a little person body? And kind of offering my thoughts and feels there, talking the same thing with, like, the Oscar dresses. And then COVID happened, and the entire world shut down.

And I still wanted to write. I really kind of liked doing it, but, obviously, the fashion industry had shut down. Nobody was shopping. Nobody was going out. And I'm like, I don't know what to talk about. So I highly picked some time. I was like, okay. What else can I just talk about with, like, being a little person in an average height world? You know, things that either I have talked about, like, privately with other people, but also, like, things maybe I haven't talked about.

And so that's kinda, like, where it started going. And then the podcast came a year later, and we've kind of been, you know, going ahead ever since.

Lily Newton:
Thank you for saying all that. What a great story and, like, such an important like, it kind of sums up why representation matters so perfectly of that. Like, you know, the work we each do matters. And, like, you never know who's gonna pick up the torch that you said that. Like, and, you know, I love that, you know, Meghan Markle didn't have to do that. She chose to, like, do that creatively. And I think that that's really important people in positions of power and who have the opportunity to represent to do so because, I'm so glad you I'm so grateful you saw that cover and, like, felt it like, felt like you wanted to do this. You know, we talk about a lot on the show that, like, it it stinks to be called inspiring by non disabled people because they just kinda throw it around like it's a word for disability. But there's something really beautiful within the disability community, like within, other disabled people we know when we, like, inspire each other of, like, yeah, we can do this.

Jillian Curwin:
100%. It's, like, interesting how, like, the word inspiration is used within our community, but, how, like, we talk about it within, but then outside of it, it's like, no. 

Erin Hawley:
Right.

Jillian Curwin:
We don't use that word. Like, it's we don't like that word. But within our community, I think it does have we're talking about each other and, like, the people we look up to. I think it does have a different meaning, and I kinda like that. It's kind of, like, aware that we, like, that we've kind of not reclaimed, but, like, that we have redefined in, like, how we talk about it within our own community.

Erin Hawley:
Absolutely. So I love that story. It's just, like, a perfect example of how we can inspire each other. But, what would you say to somebody who doesn't really feel like they have a space in the world to make change?

Jillian Curwin:
I would say and this is something that I honestly and I've been doing, you know, the podcast and the content creation and the writing for, five years now, like, really doing it and still often feel like that. Like, there's not a space for me or, like, will often feel like at times I'm writing or shouting into a void and no one is listening or no one is really listening to what I'm saying. To keep make you know, to keep speaking up and speaking out and keep making a space for yourself because it is there, and it does belong to you, and you have that you know, there's no one to tell you you don't have a right to speak or you don't have a right to create space for yourself. There's no one no forces, you know, empower has the right to do that. So I think that's just kinda something to keep telling yourself and something that I am trying to keep telling myself as, you know, I go through those moments, is that nobody has a right to tell me to not say something. No one has a right to tell me that my experience is invalid, and I I don't have the right to talk about it. So I think that's, you know, that's kind of, like, when I had those moments. It's, like, reminding myself, like, no.

I have a right to take up this space here and to speak up and speak out however I wish to.

Lily Newton:
Yes. I love that, and I think it's so important too with, like there can be so much pressure to feel like you have to have, like, the right credentials to tell your story, but you don't have to deserve to tell your story. Like, it's your story.

Jillian Curwin:
Exactly. I love how you phrase that. Exactly.

Lily Newton:
Especially with, like, that because I I deal with that and that kind of imposter syndrome and making content like Aaron. We've talked about that. Like, the the feeling too of, you know, you get on TikTok and people will kind of, like, make a statement and then say, like, Hi, I'm so and so and I have this degree and this qualification and this certification. And then you're like, Well, am I allowed to just get on and say, like, this is my lived experience? And my answer is yes. Like, lived experience is so important because for how long did we have people who were getting the most advanced degrees or becoming, like, the most prestigious professions who know nothing about disability? Like, there's no academia doesn't give you an understanding of a lived experience. Lived experience does.

Jillian Curwin:
I'm so glad you say that because that's something that's something that's, like, been top of mind for me recently with some things that I'm going through. And it's, like, realizing that the act the so the quote, unquote experts about disability are often people who are non disabled. And it is sometimes so incredibly frustrating to try to get through to them and to be like, you don't have that lived experience. Yes. You might, you know, from an purely academic perspective, know more than me than I do about certain things, but the lived experience is something that, like, you cannot downplay or diminish or take away from. Like, the lived experience is sometimes, I think, honestly, more important. Like, to to truly be able to understand disability, you have to like, that lived experience, you can't try to you know? It doesn't play second to the academics.

Lily Newton:
Absolutely. And I feel like we understand that in other, like, areas, whether it's, like, cultural or, like, just different industries even. There's this feeling, like, this idea of, you know, you can't learn a lived experience. You have to actually go through it. And

Jillian Curwin:
Mhmm.

Lily Newton:
I don't necessarily feel like that people understand that when it comes to disability because it is seen often through, like, the medical lens or the, like, practitioner lens. But it's like, no, this is actually our experience. And we see in other industries that we know there is a difference between theory and practice. Like, we can say in theory, in papers, this is exactly how it feels, but then that doesn't work out in practice. So how come we can't apply that to disability? So I appreciate we're having this conversation because I think it's important. And it also is like, why if you are listening to this and you are kind of new to a disabled identity or new to, like, being bold about it and, like, outward about it, oh, man, seek out other disabled friends. Like, being able to share lived experience is so important and, like, has to be. I I just I really it's my biggest advice.

When anyone asks me advice about anything, I'm like, make disabled friends. It's just the most important thing.

Erin Hawley:
Yeah. And when you share your story, you can use that to make friends. Like, the more I've shared my story online, I've met people that way. And building the community around you is so important to feel, you know, confident to continue sharing.

Jillian Curwin:
I agree.

Lily Newton:
I was just gonna go into I'm just gonna because you're you're creating space like this on your podcast as well. So what what inspired you to what what did made you decide to create that space? Because we obviously relate. And, like, what kind of conversations are you hoping hoping to have there?

Jillian Curwin:
So the podcast came about in 2021. So I had started the series on the blog, called Girl Talk. And I guess it was, like, towards the end of twenty twenty, beginning of '20 '20 '1. You know, obviously, we've been in COVID for in the pandemic quite a long time. Hadn't been seeing people. I haven't been talking to people. So this is my way to kind of connect and also to honestly, just like, I needed more things to talk about. So I'm like, let me talk to other people and get, you know, share their, share their perspective, share their point of view, share their voice.

So I would do these interviews, and I would transcribe them and just post them on the blog. And, really, the podcast came about because, one, it took so much time from recording to publication because transcribing does take a while, and I wanted to be as true to what my the guest said as possible. But also realized that, like, while, yes, being true to their word was important, like, in doing that process, like, their voice was getting lost. And so I was like, I love doing these interviews, but what can I can I start a podcast? Because I think this is, like, at the time where I was kind of discovering podcasts. And I reached out to my brother who, at the time, was majoring in film, television, and theater at Northwestern and, you know, so he had, like, the editing skills that I still do not have. And I was like, would you wanna do this with me? I'll pay you. And he was like, sure. Like, he he and I, like, kind of were like, this could be fun.

Like, we did not think it was going to be what it kind of has become over the past almost four years now. And it started with me just interviewing friends, with me, like, reaching out to friends in my in little person community. I hadn't really it took really me moving to New York to find the disability community, and to kind of come into my own more as not just a little person advocate, but a disabled advocate. So, you know, over time, and it was just reaching out to friends and then reaching you know, kind of reaching out to people I looked up to and seeing. Honestly, often expecting a no and being surprised at who would say yes. And going from there and just having conversations about living in a world not necessarily designed for us and how you know, what should change or how we are changing it or a combination of both. And, I mean, it's been such a it's been such a blast getting to talk to people, but it's every episode, I love learning something new both about the individual I'm talking to, but also just more about this incredible community and this incredible identity that we all share. And it's kinda you know, it's been it's just it's been something I'm really proud of and continuing to be really proud of it.

Lily Newton:
You absolutely should be. Like, it's really incredible, and I, I really I just wanna point out, I love what you said, though. Like, making that kind of step from advocacy surrounding your personal disability to, like, full on disability advocacy. And I think that that is a really important step to make, because, like like you said, you realized just how, like, oh, we're kind of powerful as a community. And we when we work together, don't have to feel so isolated.

Jillian Curwin:
100%. And it's also like a realizing, like, there's so much that, you know, more and I get it was, like, kinda like as I was coming into my own, like, I used to also, like, to really try to come into my own disability identity because I didn't have that really at all. Like, growing up, like, I don't think it really didn't take me until, like, starting the podcast, coming to New York, finding this disability community here for me to truly, like, understand that again, like, kind of going back to what we're talking about before, like, being a little person being means that I'm disabled. But then what does that what does being disabled mean to me? So it was also a way for me to kind of understand, you know, and say, like, if I wanna be an advocate in this space, what does this space look like? And what does that mean for you know, what does that mean for the community? But also, what does that mean for me?

Lily Newton:
Yes. Absolutely. And I I love that you're, like, open and honest about that because I think that that is, like, something that is more relatable but isn't really talked about a lot, that understanding of, like, even though you may be disabled your entire life, you know, I struggle with before I got my autism diagnosis, I had a lot of mental health diagnoses. But I I really heavily identified as, like, mentally ill and never even considered that I could use the word disability. And it really wasn't until, you you know, even following my autism diagnosis, I felt very in the world of, like, neurodiversity, like, neurodivergence. But it wasn't until really, like, becoming close with Aaron and making other disabled friends and starting this podcast and meeting so many cool people that I was like, no. No. No. Actually, like, I would like to grab this identity by the reins and make it my own. 

Jillian Curwin:
Yes. 100.

Erin Hawley:
I love it when other people can change how you view yourself and how we how we see each other too. It's just I love people, like, chatting and just Yeah. Your worldview.

Lily Newton:
Erin, that's such, like, a important and, like, point to make because because, like, there's so much I feel like pressure in our individualized culture to, like, self actualize on your own and, like, figure out your own feelings about things and, like, you know, spend time in your brain and figure out, like, how you feel. But the point you made is so real and is, like, the truth, which is, like, you don't learn yourself in a vacuum. You learn who you are in relation to others.

Erin Hawley:
And if you're good and bad too. Like, if someone treats you badly, then you kind of build I don't wanna say resilience, but, like, you build confidence and you better cement your identity. Like, no. I am this. I am not what you're saying I am. So

Jillian Curwin:
Yeah. And I, you know, I think so often in predict you know, with being disabled, we're kind of again, like, kinda going back to what we're talking about before. Like, so we are told what being disabled should mean and what it should look like. And if you don't, you know, fit a venue, either not disabled by society standards, not by our community standards, by society standards, like then you're not disabled enough for us to consider you disabled or you're, you know, there's, you don't fit in this box. And that's why, you know, I asked my best question every, you know, it's like one of the first question that I ask, and it's, like, how do you define being disabled? Because each answer is different and because each lived experience is different. And it's, like, that's what matters. Like, that's how you know, that's what I think is part of what makes it so beautiful being a part of this community and having this identity. It's like, my experience is mine, and I can share it.

And, like, it's understood within our community, but it's still mine. Like, I and, like, I'm not gonna let anybody take that, and no one in our community is gonna take that away from us.

Lily Newton:
Absolutely. And, like, there's space for other people to have that realization because of exactly what you just said. Like, we yes. There's this big community, but also you find your own kind of confidence or self acceptance, whatever that feels like to you. And sometimes I wonder how many people are, like, afraid to take up space and, like, identify as disabled because of some fear. But one thing I always say is, like, it's not a pie. If we're not, we're not going to run out. Like, there's there's no we're not going to run out.

And actually, like, I, you know, I've talked to friends who, like, have chronic back pain and like, you know, like, this is a disability. This is something that affects you daily and it affects your access needs. And that friend was, like, yeah. But I I don't know. I just don't wanna, like, I I don't wanna say something I shouldn't or pretend to be a part of a community I'm not. And I'm, like, well, then join the community. Like hop on in. Like, if if you if you feel like maybe your disability is not enough, you don't need to, like, become more disabled physically or mentally, or you need to become more disabled, like, culturally, like, join.

Join us and realize that, like, you don't need to be in pain every day and other people don't either, and we should work towards a world where we don't have to be.

Jillian Curwin:
Exactly. And just like the whole concept of being disabled enough, like like, un like, unpacking that. Like, I don't think again, like, those are something, like, I fully understood. I've realized that, like, I didn't consider myself disabled enough until I was coming my own disability identity realizing that growing up, I never called myself disabled. I would always say I'm a little person. It means I do things differently or I'm like, I'm short like, just to try explain it, but I would never use disabled to explain it or to really identify myself as it because it's like I never you know, growing up disability was a wheelchair user. It was a person who maybe was blind or deaf or hard of hearing or had a limb difference. Like, little person was not a part of that growing up for me.

Like, I didn't understand that, no, being a little person was part of that. So I never thought that I was disabled enough. I would have all these you know, I would know I needed a five zero four, but I never fully accepted or explained why. And so I think, like, that whole concept of being disabled enough, it's like like you said, like, there's no limit or there's no, like, if you're disabled, you're disabled. You there's no, like you have to use this certain point to be able to call yourself disabled.

Erin Hawley:
Right. And it's not a competition. Like Exactly. You know? Right.

Lily Newton:
Yeah. I know, Erin, we've talked about too, like, the it's funny because there's both sides of the spectrum. There's, like, right now, which is I maybe it's because I'm in the community, so it feels even bigger than it is. But, like, there is this kind of, like, boom of disabled content creators and, like, we're really being, proud of who we are and having confidence in being disabled. And so that can feel intimidating on that end of, like, well, I don't know if I identify as disabled. I don't know if I'm a part of, like, that group. But then on the other end, I know, Erin, you've shared, like, growing up in, you know, like, the nineties and what the views of disability were like. That, like, just because of the stigma around disability, you didn't really think you were disabled because, like, you could tell that story better than I can.

Erin Hawley:
Yeah. The eighties and the nineties were a wild time I had to be disabled. And, I mean, it always is. But I, yeah, I didn't view myself as disabled because my only interaction with my disability, which is muscular dystrophy, was telephones. And everyone on the telephone was sad, and that wasn't me. So I was like, I'm not disabled. But, like, obviously, I am. And it wasn't until I met other people with my disability and I understood the the wide range of experiences and that my I have a place in that to be disabled. I'm happy about it.

Lily Newton:
Yes. Yes. I love that.

Jillian Curwin:
I do too.

Lily Newton:
Yeah. It I love the recurring theme that keeps coming up of, like, community. Community is really important. I think that's really great. Jillian, I wanted to ask, we are, running currently our, like, acceptance campaign all about how acceptance begins with understanding and also just the importance of, like, self acceptance and knowing who you really are. And I think that your advocacy really, like, challenges what people think, and especially pushes away from, like, not just, like, tolerating differences, but actually, like, respecting and understanding. So in your view, what does acceptance of people with disabilities look like, and what do you think it will take us to get there?

Jillian Curwin:
I think and this is going to sound so simple, but I you know, and, like, prepare for our conversation. I was just kinda, like, thinking like, like, trying to think of, like, what I wanted to say about this. And I just kept flashing back to this moment when I was in fifth grade. And in my school district, there was, like, six six elementary schools and two elementary schools each went to a middle school. So in the preparation of going from fifth to sixth grade, my guidance counselor came to my parents and I with this idea of saying, like, why don't I you know, why doesn't Jillian go to visit this other elementary school and kind of introduce herself and, you know, explain what it is explain, you know, explain her dwarfism, which is not something I had done. I did I remember, like, when I was younger than that, like, reading a book, called Thinking Big to a third grade class. I don't necessarily remember the circumstances to how that happened, but, like, it's I've done it before before this moment. And I was like, say less because I get out of class for the day, and I got to bring two friends.

We got McDonald's. I gotta wear flip flops and a tank top, which, like, if, you know, the dress code group like, that was a big deal. And, I was kinda like thinking about that, though. It was like, you know, kinda like unpacking it later on. It was like, oh, I was just going there to try to ask explain to them when I asked how they would treat me like a person. And I think that is you know, it sounds so simple to be like you know, to reach acceptance of, like, to just be, like, treat us as people. Like, it sounds so simple, but it's, you know, like, this is a little example from back in February in the early two thousands where I had to be, like, you know, go to my people who were going to be my peers and my classmates who I was just wanting to make friends with at lunch and be like, this is, you know, what I am so that way you can treat me like a person. And, you know, we're you know, in some ways, we're still doing it today, and it's like it sounds so simple, but it doesn't happen, which is why I think, like, that we kind of have to keep saying, like, treat us like people. See us. Include us.

You know? Make us spaces make these spaces more accessible. Make space for us. Design you know? Design for us include us. And I think it just comes, you know, for me, it's just with, like, acceptance is, like, treat us like people. Like, I I wish it wasn't as simple as that, but it kind of it is, at least in my perspective.

Lily Newton:
Totally. I mean, it it's and it like, it's that simple because, like you said, we're still not there yet. You know? Like, we can't get more complex than that until we that's the foundation. It's, like, seeing humans as humans. And, I think that that is, yeah, it's simple. Yes. But also, like, so complex, because people don't automatically do that, especially with lack of representation for so long.

Erin Hawley:
Mhmm. 

Jillian Curwin:
And I mean, we're seeing it now, like, in some ways, like, it's kind of being, you know, on other levels to other communities. We're seeing what happens when you don't treat people like people, you know, the lengths, what can happen. And so it it, like, it does like, that is kind of, like, the essence of it all. It's like, treat us like people, and then, you know, you'll understand. You'll learn and, like, I yeah.

Lily Newton:
Absolutely. And, I mean, it just goes with, like, getting to know anyone of that. Like, let your assumptions go and actually, like, be curious. Get to know someone as you would with anyone. Like, exactly. Yeah, exactly. Well, I like that we're in this, like, talking about acceptance, and I have some more questions that relate. But before we get into that, I would be remiss to not ask you some fashion stuff because I love I love your content around fashion.

Jillian Curwin:
Thank you. Let's do it.

Lily Newton:
So I was, you know, we obviously still have a long way to go when it comes to authentic representation and accessible fashion in general, like, options. Erin and I were actually just talking about this this week, which we'll talk about more. But is there a shift you have seen that gives you hope, like, that makes you excited about the future of fashion?

Jillian Curwin:
I think, if I'm being completely honest, if you asked me this, like, a year or so ago, I would say yes. I do think that, you know, there were some incredible strides taken. You we saw obviously, like, back in 2014, we saw the launch of Tommy Adaptive. We saw in more recently, Victoria's Secret launching their Adaptive collection and featuring disabled models in, you know, on their website, on their social media in this in this campaign. We saw Anthropologie launch their new adaptive. I don't wanna say it's aligned because it's, you know, kinda saying, like, we can take our staple pieces and make it adaptive. So, like, their new adaptive I don't know what the right word is for what it is, but, like, seeing that and seeing them use, you know, disabled models more regularly on their websites as well, not necessarily wearing, quote, unquote, adaptive garments. But I think, in general, we've kinda, like, in some ways, it feels like we've reached either pause in terms of, like, we're not seeing much more or in some ways, we've even seen take steps taken back.

We haven't seen as much of that inclusion that we saw in recent years. And that is frustrating to see. And then as a little person, you know, in particular who really hasn't even had those moments of inclusion of, you know, being designed for in the way that other disabilities are even in the adaptive space, It is it's frustrating to see, and it's, like, it's again and I've asked, like, why aren't we? And I hear reasons, and it starts to sound like excuses after a minute of, well, there's too many different body types then, you know, we just there's not enough of a market. And it's like but you can say like, we we've heard that before, but then you've innovated. So it's like, I it's again, it's, like, sounding like excuses. And so I just like that. But, I will say, though, like, seeing the work that Sinead is continuing to do, and she's expanded, you know, with her starting this company and, you know, working and not just addressing the representation of it all, I think does give me hope. And, again, she's someone I have looked up to for quite a while and is part of the reason why you know, gave me the motivation to do what I'm doing.

I think that does, like, give me that, like, we're still you know, if she's not stopping and she's believe like, I I'm doing the same.

Lily Newton:
Yeah. I think I'm thank you for being honest about that and, like, pointing out the kind of we were almost there, it felt like, but it's, for some reason, feels like the train stopped because I certainly feel that way. And I think that other industries have felt that as well when it comes to, like, access. But I I like the way you at least kind of wrapped that up in a nice positive bow with the, like but the work continues. Even if maybe the, like, output from the companies is not matching what we want it to be, the work from our community is strong.

Jillian Curwin:
100. One hundred percent. I think that's, like, the one good thing is that there are still people who are, you know, who are not giving up and who are saying, like, this is not enough and are also calling it out, like and are saying, like, we've taken steps backwards. Let's, you know, let's actually go in the right direction again. Let's actually, like

Erin Hawley:
Yes.

Jillian Curwin:
Follow through on these promises that you made the community a couple years ago. Let's actually innovate. Let's be this in this you know, the fashion industry is one of innovation. It is one of always thinking about what is next. And it's frustrating when you see it kind of go backwards. It's like, no, that's not like that's not in fashion's nature. Like, that's not what fashion is meant to do. It's always meant to be evolving and changing.

And so I think, you know and seeing the you know, there's some incredible, people in the end you know, speaking up in our community right now about this, April Lockhart, Arianna Phillip, Reece Scalise, Allison Lang. Like, there are some incredible people who are who are saying, like, we are not going backwards. We're not going to be we're not gonna not be seen anymore.

Lily Newton:
Yes. Absolutely. And I love every name you just listed for real listeners if you're not following everyone Jillian just mentioned. Like, rewind, take down the names, update your feet. It's important, actually. It's very important. And, you know, I think I've been thinking a lot recently about, like, the fashion industry and the curb cut effects because people don't necessarily, like, understand that, like fashion is actually quite inaccessible in general, not just for people with disabilities. Like it's just and there are steps that like to make fashion more accessible for people with disabilities, I guarantee will have that curb cut effect of like making it more accessible for everyone.

Aaron and I were just talking about ordering from a store where, like, sometimes I can wear a medium and sometimes I need a two x like and it's the same store. I don't know why their sizing is so confusing. I wish there was some kind of way and I feel like those kind of everyday problems, those would, you know, making the industry more accessible in general will help everyone. And like the problems that non disabled people are dealing with understand disabled people are dealing with that as well. So, like, let us in. We're really innovative.

Jillian Curwin:
Exactly. Like, let us and it's like I look at, you know, and I'm wearing it right you know, full disclosure market right now, like the adapted bra from Victoria's Secret. It was not designed for someone like me and mine. And when I say someone like me, meaning my disability. Like, it was not designed to be adapted for little people, but it does actually make getting dressed for me easier because I, you know, at times, can't always reach around the back. So having a magnetic closure in the front is great. So it's, again, like, thinking like that, like, it just you know, at the end of the day, when you make your fashion more accessible and more inclusive for the business perspective, like, that just means more money. Like, you know, that means we're gonna buy your clothes.

That means we're going to spend we're gonna spend where we, you know, feel that we fit in, both literally and figure like, we're gonna spend money where we feel like that the clothes fit us and where we fit in. So why not do it? Like, why not make that investment? Because it will pay off.

Erin Hawley:
And I think a lot of companies miss the mark by not advertising it for everybody because there's no reason someone who isn't disabled can't wear adaptive clothes. Like you said, the draw is not made for your disability, but it it works for you. And it should make it easier for other people to use as well.

Jillian Curwin:
100%.

Lily Newton:
Yeah. That's a really good point that I don't think I've thought about, Erin. Not, like, the way things are being advertised too. Like, specifically yeah. Just ever truly, like, every company needs to get really versed in the curb cut effect in the way that, like, those ripple effects happen and also also the discretionary income of the disabled population. Well, like, while we have a lot of, room to grow in terms of, financial access to people, that could be an entire episode.

Jillian Curwin:
A %. Oh, yeah.

Lily Newton:
It could be a whole episode. But even with all of the barriers in place and all of the, like, things that stop disabled people from being able to make income, there's still a ton of income in our community that would love to be spent on products that work for us.

Jillian Curwin:
Exactly. And it's like, you know, using fashion. Like, we all get dressed every day. We all, you know, wake up in the morning, you know, presumably. We all get up wake up in the morning and put clothes on. And it, you know, it does when I, like, go shopping, I do have to think about the cost of not only the garments itself and the cost of alterations, and it's can I afford to pay for both? And it's like when I do the numbers, it's like the cost of alterations. I could have bought, you know, at least double the amount of clothes I got if I didn't have to pay to get them altered if I knew that they were going to fit. So that's money that I could be spending that I would rather be spending on clothes, like, let's be real, to have, you know, garments altered.

So, like, there is, like, a you know, there is a financial, there's something that came financially for these businesses to say, like, let's actually design for these, you know, for this community, for these bodies because then they will if, you know, dollars and cents, they will buy more of our products.

Lily Newton:
Absolutely. And, like, when you are part of a community that's so often excluded, like, I know for me personally, when I see something that's like, Oh, my gosh, this was absolutely designed with this ability in mind. I'm like eager to purchase, actually. And I it, this is kind of a good segue and talking about, like the word confidence and what confidence means. But nothing makes me feel confident than feeling like, oh, this had me in mind. Like this was, this, they were thinking of people like me when they designed this or created this. Like, I think that that is just super important to many guys. It's certainly an opportunity for any any decision makers who are listening to this episode.

Right. Big opportunity there.

Jillian Curwin:
100%. And again, like, I recognize, like, I was speaking very, like, on the surface. Like, there's a lot more that goes into, you know, you know, the finances and everything like that. But at the end of the day, you know, we are a community that, at least with the fashion industry as well as many others, that has not you know, these industries have not made the investment in the disability community. And it's an investment that will pay off if they actually just first start with, like, talking and reaching out to us and seeing, okay. What how can we make our, you know, brand, our company more accessible to you? And it's not just in terms of the product as well. Like, how can we just be more accessible and more inclusive to your community? And, again, we show up to places where we feel that we, you know, are, you know, belong of that we're made to feel welcome in.

Lily Newton:
Yes. Absolute oh, man. Being in a space where you feel like you belong, there's, like, no better confidence boost. So with that in mind, I'm interested as, like, a highly visible person in our community as a content creator. You you have, like, an image of great self confidence, but, you know, images versus reality are always a a a thing with having social media. So I'm interested in, like, what was kind of your self confidence journey like and, like, what what has allowed you to be the confident person you present as? And then a little follow-up on this because it's like our last question probably is, like, why is that important, and why is confidence and self esteem so important to our community?

Jillian Curwin:
I think I can answer the second question first because I think that might be easier. Because I think that the second the first question, that could be a whole other episode in and of itself. So I think why it's so important, you know, confidence and seeing confidence and showing confidence for our community is so important. I think one and kinda go slack to something we've been talking about time you know, throughout this conversation is that when we see representations of disability, we often don't see confident, empowering representations of disability, like, from being projected to us, not from what our own community. And so I think for us, it's important to counter that narrative. You know, growing up, it's I didn't see that, and so that's part of the reason why. Again, like, we're why also, like, I wanted to start the first the blog and then the podcast is because I just didn't have these representations of, you know, just stories, you know, whether it's just, like, through storytelling of, like, what it means to be a little person and, you know, what it means to be disabled. Like, I just didn't have that growing up.

I didn't have access to it because, you know, I wasn't getting it. I'm still waiting for my Disney princess. I'm still waiting for my Barbie. Like, I'm still waiting for those stories to be told by the media. And so I think that's part of it. It's, like, you know, doing it for because we just don't have it. And so I think it's, you know, and it's also to counter the more negative representations that are out there of disability, like, kind of going back to what you were saying, Erin, of, like, disability being a charity or disability being only confined to the medical space or disability being inspiration porn. And it's like, no.

Disability is so much more than that. And so I think that's, you know, with the confidence, it's like being able to show all of that and say, like, this is what it means to be disabled. This is what disability is. This is what it looks like, and, you know, we're we're proud of it. So but I think for me personally, in terms of, like, showing that, it's been a journey, because it wasn't easy. And it's still I'm you know, I've been doing this really for, a few years now, and it's still not easy, for me to do it. And I think with my approach to, like, my content creation, specifically on social media, it's I'm going to show my confidence by talking about the good and the bad of it, and, you know, not be afraid to be more vulnerable and call out the realities of being a little person that maybe may not make for a glamorous Instagram post or Instagram caption, but that's not, you know, that's not always real. That's not my real life is not like that.

And if I you know, part of what I'm doing is showing what it means to be a little person, this is part of it. So I'm gonna talk about moments of insecurity. I'm gonna talk about moments of frustration. Right now, I'm, you know, almost over seven months, like, post op from surgery, and this journey has been rough to say the least. And I'm gonna talk about it mainly because I you know, for some for the next person going through it, I don't want them to feel that they're alone. Mhmm. But also to kind of have the conversations because I think there's, you know, there's definitely conversations to be had in these spaces. And so for me, it was really just saying, like, okay.

If I'm gonna do this, if I wanna be able to talk about living in this world not designed for me, that's gonna be part of what Always Looking Up my platform is, and I'm gonna talk about it. And it's definitely not easy. And, you know, there are times where I struggle with finding the right words to say because, again, it can either feel like I'm either shouting into a void and no one is listening or at times being worried that what I'm gonna say is going to be misconstrued or also that because of and this is a whole other conversation we could have, and it's one that I've been wanting to have on my own platforms, how social media just sees my body, sees little people bodies. It can you know, the algorithms and people can put see that just see that in a wrong way, in a way that I would never intend for it. So I think it's like finding that balance of, like, how do I get the right people to see and hear what I'm saying? And so it's not it's not easy, but it's, like, something that I'm continuously, like it's, like, it's continuously a work in progress, I think, and I'm really proud of that. And, you know, like, last, like, I've done the waiting for my Disney princess, waiting for my Barbie, and then kind of talking about you know? Because they were top of mind at the time when I did it, I'm saying, like, well, I'm still waiting. And then last year was doing, a more natural for Dwarfism Awareness Month, like a natural, black and white shoot of just, like, me and my body, because we also don't see just real little people bodies. And it was hard to do because I never seen my, you know, my body represented, so then to try to do it and, like like, what does this look like? And just showing myself in that way.

Like, it's not easy, but I think the moments where it's not easy, I think, are the more for me, the most important moments for me to do it and to say, like, this is going to matter. If any if it only matters to my younger self, if it doesn't matter to anyone else, it still matters. So that's a very long winded way to say it.

Lily Newton:
No. That's a wonderful way to say it, and I love that it ended on that, that, like, your younger self is a big enough audience to create for for real. And, like, probably is the audience that needs you most.

Jillian Curwin:
Like 100%. She is she is my number one person, I think. Because, again, like, we just as a dis you know, as a person with a disability, there's still a lot of representation we don't have. And so it's, you know, making her, you know, validate her lived experience and also, again, for my younger self, but then also knowing that there are younger generations of little people and disabled people. So giving to them what I necessarily might not have had.

Lily Newton:
Yes. Which is just for me, that's, like, the the right answers to life is, like, create like, doing things to make others in the next generation not have to go through the hardships we went through. And I think that's really beautiful. I also wanted to say I really like your answer about confidence and that you bring up sharing both, like, the highs and lows of life because I think that it's a disservice to the word confidence to equate it with positivity. And I think sometimes that's what happens online. Confidence means, like, feeling positive about yourself. But I, you know, wanna counter that. And I so I'm so excited that Easterseals is gonna be, like, focusing on what confidence means in the summer.

Like, that's kind of our campaign for this summer is talking about that because I think it's super important to understand. Like, confidence is not about being confident that you have a perfect life. It's being confident that you have a life that has value. Yeah. And there's value in having difficult times.

Jillian Curwin:
Yeah. It's being confident that you have a life, that you have, you know, a life to live and a story that you're telling. Like, I think it's just that like, it's that. It's it's not just limited to the positive, and it shouldn't be.

Lily Newton:
Absolutely. And it takes, like, it certainly takes confidence to say, like, this is this is my truth, and I want the world to see it because this truth matters to me and my younger self and other people. I think that that's super duper important and helps us avoid, you know, just meeting, like, the I don't like this word, but, like, challenges we face as disabled people. It could be easy to kind of swing the pendulum fully to like, no, it's all positive. It's great. I love it. And that's, you know, also harmful. So I think it's really important to I just love that you brought that up when talking about confidence.

I think it's super duper important. Are there do you have any, like, kind of practices or things you do regularly to, like, stay in good relationship with yourself while being, like, a highly visible person?

Jillian Curwin:
I so one that I'm trying to adopt, is and I'm getting better at it, but, like, I don't know if my screen, app the whatever tells us about, like, screen time would agree is I try to if I'm posting, like, try to really, like, also take the time off of social media and try to like, if I post something, like, okay. Just let it be. Whatever happens, happens. Not, like, constantly be checking to see the analytics and whatnot and just kind of, like, letting letting what I say just live and have its moment. So trying to find ways to kinda turn off on that. So I read. I definitely you know, I'm trying to expand what I'm reading. Now to be reading other people's stories, like, other I love I'm really, like, get falling in love with memoirs again and kind of just, like, reading other people's stories and seeing how they're telling their stories, because I think that's also, like, important for what I'm do for what I'm trying to do is, like, understand how people are telling their stories and how I can through my platform that I kinda say is, like, amplifying those voices.

So just kinda, like, expanding that. I'm not the most, like, when I say creative, I mean, like, I don't have, like I'm not artistic. So, like, trying to find other ways to, like, let my creativity out is something I'm exploring, but also, like, going on walks, I think, is something and I've had to do it for surgery recovery, but it's also been kind of a moment where I feel like when I have moments of, like, feeling trapped where it feels like the work the way the world is on your shoulders or, like, where feelings just too much for me. Right now, going on a walk has kind of allowed me to just have that release of where you know? And I know, like, people will, like, say this in New York City and think that's not true where it's like, you could cry in New York City and nobody will blink twice, but it's really true. Like, I've gone on mental health walks where I have cried and, like, people have seen and, like, nobody just, like we kinda, like, give each other these are my experience. Like, give each other the space to do that. So Yes. I think that's been kind of, like, important.

It's, like, just finding outlets outside of social media. Like, if I you know, posting something, like, okay. Let it live. Let it be. And, like, finding other ways to just kind of decompress and what and, like, disconnect in what I need to, I think, has been really important for me to do recently.

Lily Newton:
Yeah. I think that is super important, and I'm glad we touched on that there because I do think that this episode might, you know, be a catalyst for some people who have wanted to start maybe telling their story online or something. And anytime I feel that I'm like, but you should also take care of your brain because online can be, that you should certainly tell your story, but also take care of yourself.

Jillian Curwin:
Right. Do both. Yes. Do both. Well, tell your story. And also disconnect. Do both.

Lily Newton:
Yes. Have confidence in your highs and lows. Share them as you'd like, and also feel confident enough to take care of yourself because you deserve that.

Jillian Curwin:
Yes. 100%. I agree.

Lily Newton:
Jillian, thank you so much for coming on our show. This has been such a wonderful recording.

Jillian Curwin:
Thank you so much for having me.

Erin Hawley:
Thank you. This is like I love talking about fashion and hearing about fashion. So thank you so much for being really a change major in that space.

Jillian Curwin:
Thank you. Thank you so much for having me. This is so much fun. You two are gonna have to come on my podcast, so we'll talk to you soon. We need to schedule that.

Lily Newton:
Yes. I would love that so much. And, listeners, thanks for tuning in. Erin, as always, I love you. Thanks for hosting with me. It's the best.

Jillian Curwin:
Yeah.

Lily Newton:
Cool. And, we'll see you next time for another episode of Everything You Know About Disability is Wrong. Oh, also, check out the description. We'll have links to Jillian's social media and, just all the cool stuff she mentioned, including a link to her podcast, which you should absolutely check out. And now I'll see you next time on another episode of everything you know about disability is wrong.

Erin Hawley:
If you liked what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton:
Thank you to our listeners. And as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley:
And I'll see you next time for another episode of Everything You Know About Disability Is Wrong.