Jillian Ilana Curwin On Looking Ahead, Looking Back, And Always Looking Up

Jillian:: Dear Diary.

Jillian:: This week I'm celebrating 200 episodes of Always Looking Up, which is such an amazing milestone and I'm so proud. And it's also... It's also a milestone that I honestly, I think part of me did not believe that I would be making it this far. That four years later, a little over four years later, I would still be, you know, working on this incredible podcast and getting to talk to the most amazing, empowering, insightful people across the disability community and making these connections that have become friendships. I think even when I started as a part of me, down to a small part of me doubted that it would become what it is. And so I'm so proud. And I just wanted to take this moment to celebrate. But before I do a little bit of housekeeping. If you're listening to this episode, you will notice that it is free on my Patreon. I just want the celebration to be accessible for everyone to listen to. So if you are new here to the Patreon. Welcome! If this is your not... If this is not your first time here, welcome back. I also want to say you may have noticed a little bit of differences in the tier structure. I switched around the early access and the Jillian's Diary entry, so now single step stool tier will have access to Jillian's Diary, as well as the opportunity to message me directly. You know, the double step stool tier members will have access to Jillian's... Jillian's diary as they did before, the opportunity to message me, as well as early access to always looking up before they drop on Spotify or Apple Podcasts or wherever you listen to your favorite podcasts. So just check that out. So. Yeah, so.

Jillian:: I think a first and foremost, as I get into celebrating this milestone, I have to thank my brother Ben. For those of you who may not know, my younger brother, Ben, he's a doodle head. I'm kidding. No I'm not. He is a doodle head. But I love him. But he is also the editor and producer of the podcast. And truly, I say this, you know, from the bottom of my heart. So, truly, this podcast would not exist at all without him. I'm so grateful that when I reached out to him and said, hey, I have this idea. I want to start a podcast. Would you be interested in editing? That he said yes. And over the years, as the show's progressed, he's become not just the show's editor, but the show's producer and has really been such a collaborative partner behind the scenes. And I certainly don't recognize his work enough on the podcast. And so I want to do so here. So, Ben, if you are listening, you're still a doodle head. You'll always be a doodle head. But thank you. I am so just proud to be your little big sister and proud to be working on this with you.

Jillian:: And I know we talked about it when we talked when we recorded the episode about our dad, but I know he would be really proud to that we have that... We are working on this endeavor together as brother and sister. So thank you, Ben. When I started this podcast, I really didn't know what it would be. It was originally just expanding on this series that I did on my blog called Girl Talk, where I talk with my friends in the little person community about being a little person. And I would transcribe their interviews and quickly, I really I felt that like something was being lost and that something was their voice. And so that was when the whole idea of the podcast kind of came about. And... I don't think in my wildest dreams did I imagine that I would be able to have conversations with people who are truly who have and are still changing the world. If anything, they're changing mine. And through each conversation, they're doing that. So, first and foremost, I guess, to each guest who's, come on, who's trusted me with this space that I was either building or have built from the bottom of my heart. Thank you. Thank you for that trust. It means the world to me. I always tell my guests before we start that this space is not for me. It's for them. I want to amplify their voice, amplify their stories.

Jillian:: And I want to, you know, I do my very best to ensure that they are being represented how they wish to be. And so, you know, I hope I've done that. I feel like I've done that. I continue to work harder to do that. And so to every guest, you know. Thank you. You know, in thinking about how do I want to celebrate or honor this milestone. You know, I was looking back at old episodes, and. I don't have favorites. I can't pick a favorite. But I think there are three episodes that stand out to me as sort of major milestones that helped me shape this podcast into what it is from what I thought it was going to be. The first that comes to mind was my episode with Judy Heumann. For those of you who may not know, Judy is the mother of the disability rights movement. She was an incredible advocate. Her life and legacy continue, continues to empower me. I will forever be looking up to her, as I think many others do. I think, throughout the podcast, in many episodes, we talk about her and the impact she's left on everyone in the disability community, and so getting the opportunity to speak to her, to have her, you know, impart her wisdom and her insight getting the opportunity to share part of my personal story with her. It's an honor that I will forever cherish. And I think that moment was when I kind of realized, like, oh, I have...

Jillian:: I have something here. Like, I'm, I'm capable of doing more of reaching big. I've kind of seen like, there's no there's no limit as to who I could possibly talk to. I think that was the moment that kind of confirmed it for me, that, like, this space is worthy of, if that makes sense. The second, and I don't remember timeline wise if this was recorded before or after my conversation with Judy, but the second that comes to mind is my conversation with Rebecca, Rebecca Cokley, and Becca Bailey. And I talked about this... I wrote about this in a book that I was a contributor to called Dwarfism: Arts and Advocacy. My chapter was called "Podcast As A Platform For Advocacy" and I talked about this episode in particular because we put this out, I think, in about 48 hours. So if you haven't listened to it, this episode was recorded about 24 hours after the Dobbs decision was released, not before it officially came down, but when it was when it was leaked to the public. And as we were all reacting, my instinct was to reach out to Rebecca Cokley, who is a mentor of mine, and Becca Bailey, who is also an incredibly fierce advocate, to have a conversation about how this decision impacts the little person community in particular and what this this means. And so, being able, you know...And they were incredible, incredibly gracious and immediately said yes.

Jillian:: And the fact that we were able to put that episode out within, I believe, like about 48 hours from when the news dropped. And again, kudos to my brother, who immediately was like, there was he was like, yes, I got it, I'm on it. I think that was the moment where, like, the podcast could be more than just a place to amplify stories, if that makes sense. Like, it was more than just a place for storytelling. It was really a tool for me to advocate, to advocate about issues affecting the dwarfism community, the disability community etc. and I think that like, it was like, oh, we like I... It just, it can be more than just a place for stories. It can really be a place to kind of advocate for change, and also be able to react in real time. And so, that was the second one.

Jillian:: And the third one was the 100th episode. So that was recorded about two years ago, because for some reason, I decided that a season of this podcast is going to be 50 episodes or two years long. So the third that comes to mind is the 100th episode, which I recorded with Sinéad Burke. Now, I know I've told the story many times. But Sinéad is a very big reason as to why Always Looking Up as a platform, which I include the blog as well as the podcast, exists. So growing up, to quote April Lockhart, who is a dear, dear friend of mine, I'm an incredibly fierce and fabulous advocate herself, I've always been a disabled fashion girlie, but have never seen myself in fashion, have never been designed for by the fashion industry, and for a long time, as much as I was frustrated by it, I kind of just accepted that this would be the status quo. That even with the advent of quote unquote "adaptive fashion" that the industry would just never see me nor include me and that, like, there was nothing I could do about it. And then I saw Sinéad Burke on the cover of British Vogue being recognized as one of, I believe, 15 Forces For Change. And again, as I've talked about this before, the September issue of Vogue and I think of any fashion magazine, but I know for Vogue, in their editions, the September issue is the issue. It is the biggest issue. They sometimes are over 800 pages. So, for her to be on the cover alongside these like... This was a huge deal. And I remember we were in Europe at the time for a family wedding when the issue dropped. And so I remember going from store to store in a city that I did not know trying to find, get my hands on this issue. And I did, and I read it from cover to cover more than ten times, easily more than ten times, and carried it with me everywhere.

Jillian:: Which, as I say that I realize that is a personality trait that has not changed in my entire life because I have vivid memories of me carrying around a Sleeping Beauty book when I was like three, to then carrying around a packet that my dad had made with all the lyrics to Les Miz when I was in elementary school, to now, you know, on my phone I have my Kindle with me, so I always have a book in my hand. So that has not changed...a book or magazine or some form of reading materials. And so, reading her story kind of gave allowed me to believe that, like, maybe I can't change the industry, but I can certainly talk about it and call it out and perhaps, you know, and see what happens. And so seeing her reading her story was what empowered me to start the blog. And then a year later, I started the podcast. And so getting to talk to her, and first, thank her for being this, you know, being kind of the spark that ignited, that lit the match, that ignited this podcast, was just an incredible honor. And I'm so grateful that I can call her a friend, which is also, like, somewhat surreal to my younger self to be able to say she's a friend of mine. But I think those three moments in particular, really, really, I think kind of helped set the tone of like of what I wanted of what the podcast has become in my mind.

Jillian:: For those of you listening, you might have different moments. Please let me know what were major milestone episodes for you or what conversations left a lasting impact on you where you, you'd want to hear more from. Because, as I say to my guests, when after we're done recording the, the invitation is always open for a return appearance. And I'm grateful to those who have made return appearances, and it's so fun getting to talk to them and kind of catch up on where they are in their journey, see what they're up to, and talk about the ways in which, you know, the world has changed or that they're still trying to change the world. So yeah, I would love to know what episodes were kind of major episodes for you.

Jillian:: But that was looking back, looking ahead... And I'm going to try not to get emotional because I there's a lot of mixed up emotions I have right now, not because of the podcast or anything, but I think it's because of what's going on with my body. As you know, I'm recovering from surgery, but that is a topic for another episode because boy do I have some updates for you on that. But looking ahead, I still I'm at this place with the podcast, and I want to emphasize that I'm so proud of this podcast and what I've been able to do with it.

Jillian:: And yet there's a part of me that still feels like I am just getting started with it. And I think that's part of because the podcast has continued to evolve. And as it should, as I wanted it to. And I've definitely found myself being more being less hesitant to talk about certain topics, to talk about certain issues, to really make my stance clear, which is something that growing up, I had a hard time doing for a few reasons. And so I'm definitely wanting to continue doing that. I think there's a lot happening right now, in our community and outside of our community, in our country and in the world around us that, you know, I want to talk about and I want to have conversations with people who are working to make things better, who just are, who know more, who are able to educate me and therefore my audience. I'm someone who does not, who is proud to admit I don't know everything. And there's a lot that I need to learn and want to learn. Sorry for the many ums. I recognize that as well. That's something I need to work on with these entries, but... I think also I'm at a place right now, and again, in part this has to do with what I've been dealing with physically, with my own body... But also, you know, as I'm recording this, it's the end of...Disability Pride Month just ended. And I know that these past few years since the start of the podcast, but really since moving to New York City and finding the disability community outside of the little person community and making those friendships and learning from them about their lived experience, being a disabled person in a world not designed for them...

Jillian:: I've realized that, you know, growing up, I never identified as a disabled person. I was always a little person. Every accommodation I needed was not because I was a disabled person, it was because I was a little person. It was because I was short. And it took finding the community to realize that, no, I'm a part of something bigger. I'm a part of this disability community as a little person because I'm a little person. I'm a part of this greater community that is so vibrant, that is so beautiful, that is so powerful, and yet as a little person, as a person. And so I tried, sorry... And so I tried, these past few years to try to like, not separate the two, to try to feel, you know, to emphasize that as a, you know, when we see disability representation that just as a disabled person, I feel I am represented. I am being represented. And that's true. That's very true. I believe that's 100% true. And I'm so proud with seeing there's been a lot of moments recently of disability inclusion and disability representation that I'm so incredibly proud of and do feel seen by.

Jillian:: I want to make that clear, but at the same time as a little person, and I think this particularly applies to applies to fashion, the fashion industry right now, at least where my mind is at, is that, you know, as a little person, even as we're seeing adaptive fashion grow, as we're seeing these moments of disability representation, disability inclusion... And we're seeing brands enter the space and saying that they're going to design for the disability community, I don't feel, you know, my body is not being designed for still as a little person. My... The clothes in adaptive fashion don't fit my body. They're not designed for my body. They still have to be altered. And in making those alterations, a lot of the design would be lost. And so I feel that, not that I have to kind of reinforce that separation again or kind of go back to that and say like, no... As a... While.... This is great as a little person. I'm not, you know, it's hard to not feel that you are still not being fully seen. And maybe that's it. Maybe it's just that I'm feeling seen. I'm feeling represented. I'm feeling included. I'm feeling considered. Like my access needs are being considered, etc. but I'm not being fully seen. My access needs are not being fully considered. My body is not fully being designed for. It's not fully being represented, it's not fully being included. And it's frustrating. And I know and I want to emphasize this does not just apply to the dwarfism community... People...

Jillian:: There are other disabilities that are not, you know, when we talk about disability representation that are still not seen in the same way, they're not given the same representation and they're not giving the same access... Their access needs are not considered in the same way. And that needs to change. And I want to have more conversations about that. I want to talk about the ways in which even the quote unquote disability world is not necessarily designed equally or equitably for all disabled people. And, you know, I say all this to say that I am so proud to be a little person. I am so proud to be a disabled person. And I'm so proud of these moments. And these are not just moments like... I'm so proud of what I'm seeing in regards to disability representation, inclusion. And I'm proud to work alongside and be in community with so many incredible people. I just, as a little person, there's a part of me that's still waiting and I'm tired of waiting. And maybe the first step is talking about it more. So yeah, again, there's I think a lot more to it that is tied into what I'm experiencing with my body right now that I'll go into on a separate episode, because I'm pretty certain in that episode I will cry and I will curse, and I don't want to do that here.

Jillian:: But again, I just want to say from the bottom of my heart as I'm getting ready to wrap this entry up, thank you to my audience. Thank you so much for listening, for following, for supporting me, for your feedback, for your comments. It means the world to me. I read every single comment. I read every single post. It means so much to me. To every guest who's come on, again, I cannot thank you enough for trusting me with this space, with this platform. I truly cherish our conversations and I'm so, just so grateful. And I cannot thank you enough for that trust because I know it means a lot. And again, to Ben, doodle head, this podcast would not exist without you. And so thank you. And I'm waiting for that edit. I will get the intro to you and we'll get that episode edited. Yeah, I guess I guess that's it. You know, 200 episodes. It's its major. I'm really, really proud. I'm really excited for what's to come. I have a few episodes scheduled and recorded that I'm really excited for you all to listen to.

Jillian:: Oh, one final thing, one final housekeeping thing. I do want to say that, you know, while JillianIlana.com has kind of been dormant, it's been updated. It's gotten some highlights. It's gotten a touch up. And I think I finally, finally and this has been way overdue. I will fully admit this has been way overdue. Finally, I've been able to make transcripts for the podcast episodes. I know now that Apple Podcasts and Spotify does have transcripts, but I believe it might be a premium feature, so it's not fully accessible to everyone unless you pay, which I, you know... I want. I'm trying. I've been trying my best to make this podcast as accessible as it can be, knowing that there is more I can be doing. So I will say check out the website and the link will be in the show notes when they're up, but I, and I will post on my stories, but I will be posting the podcast transcripts, as I was doing prior, on my website. Also on my website, I want to write more. And so I plan on doing that as well. There's a lot I want to talk about on there that I think might also, you know, I might talk about on here, but I also might go a little bit further or at least share some screenshots on, on the on the blog and... Nothing scandalous. It's all like, I would it's I think, you know, there's one post I have in mind that's been in my mind for a while about the words we use to describe a little person or a person with dwarfism, and what words are deemed acceptable and what words are not. I have a post about that that I'm outlining. There's another post I have about the just how little people bodies are perceived and the impact of those perceptions.

Jillian:: That's a post that I've been wanting to write for now, about a year, a little over a year that I think I was debating. And I think I want to write it, write it versus versus talk about it though. Who knows? So but stay tuned for that. But I promise I will be writing more. Because I really do, I miss it, I really do like it. I've been trying to get back into it. I've been doing it on other platforms. But I also want to do it on my own that I built that's that started it all. So check out the website again. It's gotten a little bit of touch up. It's got some highlights. You know, it's just it's fresher. Let me know what you think. Yeah. Make sure you're following me on Instagram. I know I said back when I went on hiatus that the podcast episodes that everything podcast related was going to be on @alwayslookingup.podcast. That has kind of shifted. So now really make sure you're following me on my main profile at @Jill_ilana, @jill_ilana. And stay tuned, because I have some really exciting things coming up on there that I'm hoping I'll be able to share elsewhere, but that's really exciting. And for that, it will be coming out in October. And if you know what October is and you know what I usually do in October, you know, let me know your thoughts.

Jillian::Let me know your predictions on what you think I'm doing. But follow me there. Follow me on TikTok. I believe on there. I'm at @jillian_ilana trying to be more active on TikTok as well, working on that. And yeah, if again, if you're new here and this is your first episode, I hope you join. Check out the Patreon. I really like doing it. I was really nervous to start it, but I'm really happy about it. I know it took a couple of weeks off, but we're back. We're back. And yeah, again, let me know what episodes were really milestone episodes for you. I would love to know what your favorite conversations were, who you would like to hear from again, who you'd like to hear from for the first time. Truly, as I've learned through doing this podcast, you know, there's no... I've kind of embraced like putting myself out there in ways that I never would have before to people, to introduce myself and see if they're willing to have a conversation with me. So let me know. There are no limits on Always Looking Up, as you know. So we'd love to know who you'd like to hear from as well as what topics you'd like to hear discussed. So, with that, don't forget, height is just a number, not a limit. And here's to 200 episodes of Always Looking Up and many, many more. Stay tuned.