Jillian Curwin On My Balancing Act

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00:00:00:15 Jillian Curwin: Hi everyone. Welcome to Always Looking Up, the podcast where no one is overlooked and height is only a number, never a limit, hosted by me, Jillian Curwin. Each week, I'll be having a conversation about what it is like to live in a world that is not necessarily designed for you.

In this week's episode in honor of Disability Pride Month, it's just me and the microphone. I discuss what it was like being the only little person in my family, at school, and in my town, feeling like I'm balancing between three different worlds, the non-disabled little person and disabled, and where I think my place is within the disabled community. Let's get into it.

Hi, everyone. As you heard in the intro, there is no guest this week. It's been quite a while since I've done a solo episode and I've been wanting to do one for a couple of weeks now. So, I thought now is the perfect time to do it because a lot is happening in my professional life and there's definitely been a lot swirling in my head recently. I just kind of wanted to talk about, especially because it is July, it is July 20th when I'm recording this, which means we are about two thirds of the way into Disability Pride Month. I think this will come out the day before the 32nd anniversary of the ADA being signed. So, yeah, I wanted to just talk.

Disability Pride Month is a relatively young awareness month. It is in July because of the passage of the ADA. I don't know for certain when it was established, but this awareness month is no more than 32 years old. I can say that quite confidently. If I'm wrong, please feel free to shoot me a DM and tell me so and I'll come back on and correct myself. But Disability Pride is… it's an interesting concept for me. I think with what has happened in this country leading up to disability pride, mainly the Dobbs decision reversing Roe v Wade and the impact that has on the disabled community, on the little person community. I think it has definitely made it hard to feel proud at times to be disabled and to want to celebrate it on social media the way, you know, for Dwarfism Awareness Month in October I posted every day. And this month I just haven't felt that desire to post or, like, knowing what to say and feeling how to be disabled. Because right now it feels like the world, and I'm speaking for myself here, doesn't want me to.

And it's interesting because I had this realization, like it really hit, clicks with me recently, that when I was younger, I never used to say, you know, when asking for accommodations or when needing something, needing a stool or anything like that…it was never because I was disabled, it was because I was a little person. In my mind, I always separated the two. I didn't necessarily… I think if I was told that I was disabled, I might have disagreed. I don't know. But I definitely, when thinking of me being a little person, like what I needed, the accommodations I needed, anything like that, it was because I was a little person. It wasn't because I was disabled.

And I think part of that comes from the community I was raised in, and not just talking about the little person community, though I do think that that's definitely a part of it.

Looking outside that for a second and just kind of focusing on my average height world, I think, and the people who said this said this with the best intentions, like it was just… I can just do things a little differently, I'm just short. And I think, you know, and again, maybe this could be because I was the only little person in the town I grew up in and, unless it was an LPA convention, often the only little person in the room, that other people didn't see it as a disability. Therefore I didn't see it as a disability. And, you know, in their heads, a disability is someone who can't walk or is truly limited, whereas I am ambulatory. I, you know, a lot of what makes me disabled isn't because of my body, if that makes sense. So I think that's part of it.

And then, looking at LPA and the little person community, I felt like disability wasn't truly embraced as an identity there either. And it really wasn't until, you know, recently… And when I say recently, I'll say since I moved here to New York City in May of last year, of May of 2021, and finding the disabled community, that I realized that LPA the little person community sometimes really doesn't feel a part of it.

And so I wrote this Instagram post today. Again, this is July 20th. The anniversary of the moon landing for my You know, if you if you knew my dad, you know, that he would want me to say that. So I just felt like throwing that in there. But this is the caption of this post I wrote where I am doing a headstand, which knowing my daddy, you know, he would not like, but I've been able to do it since I was little, as in younger. So here we go:

Being disabled to me often feels like a balancing act, balancing between different worlds, different identities, trying to come to terms with who I am, the world I live in, and the communities I belong to.

When I was younger, the world seemed very separate - the average-height and the little person. I lived in the average-height world where nothing was designed for me, where being the only little person meant people were always looking down to look at me, where no matter how clearly I explained it, there would be people who would never get it, never understand. I wouldn't say I was disabled, rather, I would simply say I was a little person that I was just short in an effort to fit in. I got to escape to the little person world for a week or a weekend where the environment was made to be more accessible, where people looked me in the eye when having a conversation, people who understood what I'm going through on a daily basis.

Now that I'm older, I'm still balancing between these worlds while trying to find my place in the disability community at large. As a little person in the disabled community, there are times where I still feel alone, where there will still be things I never fully understand, never fully be a part of. The difference now is that I'm coming to terms with my disabled identity. I'm not afraid to say I'm disabled. And I know that if I stumble or fall, there is this community to support me that has my back, that sees and hears me.

I know there's quite a bit to I guess talk about there. But yeah, I think the first half definitely sums up what I said before, is that growing up I really didn't identify as disabled and I think… I don't want to say that was harmful. I think though, I really do. And, you know, hindsight's 2020, but I'm really looking back and thinking Who would I be as an advocate? Just where would I be in my career if I identified sooner that I was disabled? If I really embraced that as a term?

And then now that I am embracing disabled as an identity and have found this community and my best friends, but yet still feeling… I don't want to say on the outside looking in, but feeling like that there's still something I'm not a part of. I don't know if that makes the most sense. It seems like, and I talked about this, I know in a previous episode with Sid which, if you haven't listened to I highly recommend because she's amazing, about this disability hierarchy which does exist and at the top are definitely people in a wheelchair. For whatever reason that thing, that they're a wheelchair user, and then it kind of goes from there and little people, I said, definitely feel like we're at the bottom because, and this is me speaking for myself right now, not the community at large, not the disabled community, but just, you know, me and my thoughts, that one, we again have… definitely there's definitely a separation between us and the disabled community at large. And also because, at least those with achondroplasia, which is my type of dwarfism and others, you know…like I said before, a lot of us can walk. A lot of us can do things just like other like average-height people can. But things are just more often or not out of reach. And again, what makes us disabled sometimes comes more from the environment and society rather than our own bodies. You know? That's what's disabling. And again, this is not for all cases. And again, I'm not speaking for all little people. I'm speaking for myself here. I don't know why I keep feeling the need to reiterate that, but I guess I do for some reason. So I think, you know, and I'm trying to… It's hard because I've felt like that I'm always on the outside looking in or I'm never fully a part of a group.

Essentially my whole life, again, being the only little person in the family, in my immediate family, my extended family… And it didn't, you know, I didn't have this realization until someone pointed it out that, no matter how understanding how well they listen. and I want to be very clear, my family… I love my family, my cousins, my aunts, my uncles, my mom, my brother, my dad, my grandparents. They are absolutely amazing. I know that every single one of them is just a phone call or text away if I need anything. And you know, I love them all so, so, so much. And I know that they love me, too. But there is a part of my life that no matter, you know, like I said in the post, no matter how well I explain it and try to show them, even some cases they'll never fully understand. They'll never be able to get it.

And, you know, same thing at school. I have, you know, some of my best… my best friends I've known since we were three years old. We went to pre-school together. We went to camp together. And I have other friends who I've been friends with since elementary, middle school and high school. And they would, you know, I like I still felt… a lot of time… you know, it was hard to make those friends, though, because I felt often that I wasn't seen and that I wasn't being heard and I just wasn't being thought about because, you know, it's easy to overlook the shortest girl in the class.

And again, I had to have things that made me stand out. And I think in middle school, you want to stand out in certain ways. You don't want to stand out for seemingly getting special treatment, not saying that reasonable accommodations are special treatment. Not at all. But it's just, you know, I had a chair on wheels with a footrest in all my classes. I was allowed to leave early to get to the next class. And so, and I'm not saying that this is necessar- that necessarily played a part of it, but definitely…I felt it in definitely middle school I think. And that's where all these, the friend groups really form and establish that's where you're aware become aware of what a clique is and, again, is like that desire to fit in and to really not be seen as disabled, as a little person and definitely, you know… But still feel like, no matter how I minimized it or… there was a period of time where I said I don't need the reasonable accommodations, I want to be treated like everybody else, but still never was and still was never really seen as someone who belonged, who just who had a place there, who deserved to be there.

I think the worst I felt emotionally, in that sense, was definitely my junior year in high school. I really felt invisible and would… there was a period of time where I called or texted my mom every day and asked her to pick me up from school because I just emotionally could not be there. I could not be feeling like that and feeling like… that nobody was seeing me, that nobody… and it was hard cause I didn't necessarily…. I didn't want to say at that time that it was because I was a little person. And again, I don't know if that really was the case or if it was just all in my head, but that's really how I felt - was that I felt that nobody was really seeing me. Because I was the only little person, so they didn't have to see me. They didn't. You know, like I said, they look, people look down to make eye contact me. So if they just didn't look down, they didn't see me. So I think that had definitely played a part and, you know, I made some friend choices my junior and senior year based on the fact that I just needed a friend. And I'm not going to go into all that what happened because it was high school drama. But like, you know, looking back hindsight, 20/20. But I just know that, in the moment, I stayed by the side of people who were my friends and who were seeing me in some way, Which I just…I needed. I desperately needed because, again, LPA was a weekend or a week in the summer, and that was the only time where I really felt, quote unquote, normal. I say that because what is normal?

Where I, you know, had I had people who understood people who would just make eye contact with me, who didn't have to make an effort to look down, you know, on me in order to see me. So that was, you know, that was two weekends and one week a year with the occasional, like, holiday party thrown in.

So I think that definitely played a part in not wanting to be seen as disabled, but also, you know, even now… And this has been, I guess, almost… oh, my gosh, it'll be almost ten years, it'll be ten years next year since I graduated high school. Oh my god. But still feeling like that… And it's frustrating. It's… I think it's even more frustrating now to be feeling like this, to feel like an outsider in your own community, because I did find this community. I found my best… truly my best friends, I think, in this community and moving to New York and I found that, because I embrace my disabled identity… it's when I started the blog back in 2020 and even before that, and definitely when I started the podcast, and, you know…Through these platforms, I've got to talk to people I never thought I'd get the chance to talk to, like never ever, and have these amazing conversations about. You know, we're people who understand what it's like to live in a world not designed for you, where other people are the only disabled people in the room or in their families, and shine a light on things that non-disabled people don't want to talk about. And so like… and I'm, you know, during this month I should, in like reflecting on, it's like I should be, I should be proud even des-… not even despite the Dobbs decision, but even with what… what's happening outside the community that's affecting our community.

Like, I should still feel proud to be disabled and feel like I belong and right now, again, I feel like I'm balancing between, I guess, now three worlds and I don't know where my place is. You know, I have the average height world, which is the world I live in, average height, non-disabled world.

You know, where things are not accessible. Where? You know where nobody else. I'm the only little person, often even amongst my disabled friends I'm the only little person right now in my in like my local New York community. So like, in balancing… in that, you know, balancing in the little person community and trying to make a difference and have my voice be heard there and, you know, with everything going on, I think that's definitely important. And then again, with the disabled community that I really found, and has been welcoming to me… I'm not taking that away and saying that they haven't been welcoming. But it's just still... I still feel like that I won't belong, or that I don't yet. And, I don't know what to do. I don't know how to change it, cause I don't think I'm doing anything wrong.

And again, I… it's just kind of it's me having to figure it out and me having to find my voice. Within that and too, i guess, have these conversations also not to myself recording into a microphone, but actually with my friends. And I'm not saying that I can't in any way. I… I will be. But I think this… I just kind of needed to get it out here. Because you know, again, why I started the blog and why I started the podcast is not really… it's not for me, it's for my younger self and for the next generation because there will be other little people in the… who feel like that they're the only little person, who feels like that nobody understands. There'll be other disabled people, who feels like, you know, they live in a world where it's not designed for them, where nobody else will really understand.

So, I'm telling these stories and having people come on and tell their stories so that way people that younger generation will listen and not feel alone, and know that what they're going through, probably someone else is going through and find ways to persevere, to just be a badass and, you know, get through it. Not overcome. We don't say overcome. We're not… no…but like, just know that they're not alone. Cause I think that is just so important and for so long. And even now, you know, being a disabled person, being a little person can feel very, very lonely. And again, I think it's what's frustrating, is that knowing that I'm not alone but yet still feeling lonely. But that was a little… that was a lot. I know I'll keep this one rather short and sweet. I think my other solo episodes have been definitely longer.

But you know, thinking about… reflecting again on the fact that it is Disability Pride Month and despite everything I just talked about, I am proud to be disabled. I think it's definitely hard to express right now with, again, what's happening in the country and with how I'm feeling. But, a lot's happening in my professional life and, while I wish it wasn't happening under the circumstances that it is, I do believe that it is because something good is about to happen. And, you know, if anything, doing this podcast has taught me to take chances to reach out to people who I never thought would give me the time of day to have conversations and to really make, you know… I definitely want to be a part of the disabled community more than just this podcast, more than just the blog, which I know I've neglected. I'm sorry, but I definitely… I have some posts coming. But the podcast has been definitely been a priority for me. But I do love to write. And I find that, through the blog, I've definitely been able to tell stories that I haven't had been able to find the words for on other platforms. So definitely we'll be getting back to that.

But I definitely, you know, the more I do this, even on days where I really feel alone, the more I know that this is where I'm supposed to be, that this is the community I'm supposed to be a part of.

So on that note, as we're celebrating the anniversary of the ADA, whether we're celebrating that in a good way or not, depending on your thoughts on the ADA and what's happening right now, I guess the final message I want to leave you with is that, you know, just to check in with your people, make sure they're okay. And to know that… to any little person in an average height world, any disabled person in the non-disabled world right now that you are not alone. And my DMs are always open.

So with that, I guess the last thing I want to say right now is, height is just a number, not a limit.

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

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