Haleigh Rosa On Why Disability Has A Right To Be Seen

Image Description:

Haleigh Rosa, a disabled woman in a wheelchair with long, brown hair sitting, looking over her shoulder, wearing a brown, halter crop top and brown pants. Behind her are windows and the city. Overlaid is the text “Always Looking Up. Episode 98 -> Haleigh Rosa, Why Disability Has A Right To Be Seen

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, I sat down with Haleigh Rosa. Haleigh is a disability model, advocate and founder of the FOR EVERYONE Foundation. Haleigh has collaborated with iconic brands, including Off-White, Tommy Hilfiger, and SKIMS, having appeared in a campaign launching the brand's debut adaptive collection that recently went viral when conservative political commentator Candace Owens expressed her opposition to disability representation. We discuss the differences between being uneducated and being ignorant, how she and the disabled community responded to what Candace Owens had to say, and why disability representation matters, why it is everything. Let's get into it.

Hi, Haleigh.

Haleigh Rosa: Hello. How are you?

Jillian Curwin: I'm good. How are you?

Haleigh Rosa: I'm doing great. Thank you for having me.

Jillian Curwin: Thank you so much for coming on. We've talked before for some Runway Of Dreams things, which we'll get into. But this is the first time we've really had like, this one on one conversation. So I'm very excited to have you on the podcast. Some things have been happening that I definitely want to talk about.

Haleigh Rosa: Yeah, I'm excited as well. I know we've definitely met a few times before, but never had the chance to speak on our own. So this is lovely.

Jillian Curwin: I'm excited. To start, why don't you tell my listeners a little bit about yourself.

Haleigh Rosa: So my name is Haleigh Rosa. I am 34 years old. I just had to think about that. That's scary. I'm from South Florida and I am a paraplegic. I was in a car accident when I was turning 25 years old, let's say, living in North Dakota. The car, you know, just hit black ice, basically, we rolled over, I was ejected. And from there on out, I've been living a different life.

Jillian Curwin: And how do you define being disabled?

Haleigh Rosa: You know, I think it's different for everybody. I'm not sure there is really a one,  one-answer-fits-all for this question. I really don't know if there's like, a specific definition I would use. I think, you know, people with disabilities live normal lives. Let's say. And yeah, that can be a learning curve for some people, let's say. But I guess that's, that's why I'm always open to sharing my story.

Jillian Curwin: Can you talk more about that learning curve? Because you went through the experience of being non-disabled to disabled. So what was that transition or that time like for you?

Haleigh Rosa: Yeah, you know, so prior to my injury, I didn't know much about, you know, the disability world, let's say. I think that's, you know, an honest answer for a lot of people. I've had this conversation with a few people, you know, growing up, even in middle school, high school, it's like I didn't not want friends with all different, you know, disabilities or whatever it could have been, but it just wasn't something that I saw. So I, I was uneducated in, in that aspect because I wasn't around it, I guess, you know, I didn't really know anybody with a disability. So, you know, there was quite a learning curve, especially for me being thrown into that world 25 years of life, living able bodied.

Jillian Curwin: Right.

Haleigh Rosa: I’ve really gotten to see both sides. And I see how, how much people don't know. I want to use the word uneducated, but, you know, that almost feels like, harsh because I don't think people purposely do that. I think, you know, in our world, it's just so common to not know a lot about disabilities.

Jillian Curwin: I agree. And you raise an interesting point that I've never really talked about, I don't think, before, is that a lot of times I'll say that people are ignorant, that they're uneducated. And it's true, though, that it's not always their fault because that education, you know, thinking of just like, disability history, a lot of what I learned about our movement and like, our community came from watching Crip Camp, which is only a couple of years old. And so it's like, an interesting point like, how much do we… When like, we encounter ableism like, do we, how do we take into account the fact that people just truly might not know? And when does that sense of not knowing cross a line?

Haleigh Rosa: Well, yeah, exactly. So right when you were saying that, you know, it's, it's funny because there are those people that do say things that are just outright rude, right? That happens whether you're disabled, able bodied, it doesn't matter. People in general can be rude sometimes. But there are, you know, the group of people like me who like, generally and genuinely did not know based on education alone, enough about the world of disabilities.

Jillian Curwin: Right. And it's, we're going to get to an example where people, where a certain individual was just choosing ignorance that day. But I feel like it also, and I'm wondering how the experience is like for you like, comes up a lot with kids and how to handle interacting with kids and even younger adults. I mentioned Runway of Dreams before. You and I have both done Q&A panels where we've spoken to college students, which is, I think, my favorite part of being involved with that organization is getting to talk to the next generation and people, you know...

Haleigh Rosa: Those kids are really doing amazing things.

Jillian Curwin: Mmmhmm.

So, like, how do you, as someone who has public platforms like, how do you like…What does that responsibility feel like to you in terms of being an educator even if, you know, it's just like, you trying to also live your life? I don't know if I phrased that the best way.

Haleigh Rosa: You touched on, you know, children and handling it with them, first, so I’ll kind of go off of that. But, you know, a lot of my let's start with this. A lot of my friends have kids. Right. So it's interesting because now these kids are growing up around someone in a wheelchair. And you'll see from a young age this happens with kids that I don't know also, but they're very interested. They want to know, like, oh, some of them use the word wheelchair. They must, you know, know someone in a wheelchair or, some of them are just so little, they  like the wheels and they want to touch the wheels or whatever it may be. And, you know, I think it's important that the parents don't freak out and kind of allow their children to have these interactions, because I don't want it to be negative. I want them to, you know, if you want to touch the wheelchair wheels, kid, go for it. I mean, they might be dirty, but that's on you. But my friends that I'm close with, their kids don't even think anything of it at this point. It's like, you know, they want to sit on my lap. They want to, like, go for a ride. They're, they're so young. They just are being, you know, their sense of normalcy towards it. And yeah. So like, as for the public and, and having a platform and educating people, it's important. But I try to do it in the most natural way you know, I'm really just showing my life and how I live with a disability. And yes, I'm happy to raise awareness for issues and, and things like that. But on the other end, I want people to see that just because I use a wheelchair, you know, I'm not, you know, glued to the wheelchair. I can live a happy life, you know, doesn't define my life exactly.

Jillian Curwin: Let's talk about your platforms. How did you…? Because you are a model. I don't know if you said that in your intro, you are a model. How did you come into modeling? Was it something you always wanted to pursue? Is it something you decided to pursue later on in your career? How did you come into it?

Haleigh Rosa: I had done a bit of modeling when I was like way younger, nothing in my adult or teenage years, really. And when I got injured, I just noticed the lack of representation. And when I wanted to go buy jeans, you know, when I was in occupational therapy, in inpatient rehab, it would have been so nice to see someone in a wheelchair wearing jeans, because I literally cried to the occupational therapist saying, “How am I ever going to wear leggings or jeans again?” Because you don't see these things. So how would I know? So I think, for me, getting back into that, most of the reason came from I want people to see that, you know, representation does matter and showing people with disabilities and wheelchairs and whatever you use, or however you live your life, is, is extremely helpful to the people who need it.

Jillian Curwin: So true. I want to put a pin in the representation because I think that'll come up later with what, with again, talking about something that happened recently. But I want to put a pin in that because you've brought up jeans and I talked to, his episode came out yesterday, as we’re recording this, I talked to Oliver Scheier who's the son of Mindy, who founded Runway of Dreams, the organization you and I are both involved in, that started because he wanted to wear jeans. And it's so interesting because even for me like, finding a pair of jeans is so hard, even though they're such a basic item of clothing. And I think it just, kind of, it's so interesting how like, we all have different disabilities, but, yet, wanting to wear jeans is something we all have in common.

Haleigh Rosa: But to, to reel it back into me showcasing, you know, just daily life and normal life with a disability, you know, like, there were plenty of days when I wasn't in a wheelchair, you know, age 24 and younger, that it was still hard to find jeans. This is an issue across the board. So if we're all having, it doesn't have to become, you know, pinpoint people with disabilities and we're not checking a box, you know, we are people that matter and need to be shown.

Jillian Curwin: Exactly. Exactly. I just had my thought and then it just like, literally floated out of my head right there.

So what then like, really, because you talked about like, with your platforms and with like, modeling, was there like a moment, though, where you were like, I really want to be more of an advocate? Did it just come naturally? Like, how did you grow your platforms from the advocacy, advocate side of things?

Haleigh Rosa: Yeah. So in 2020, when the pandemic really hit, I think that's when our world started changing in the sense of people wanting to see, you know, like, real bodies and real people and disabilities. And everyone was just, you know, trying to be more inclusive. And when that movement really started to happen is when something kind of went off in my brain and I was like, you know what? Like, this is what I want to be doing. I want to start a foundation. I want to, you know, show representation. I want to be involved in that. And prior to that I can say the only reason I really didn't take that leap was because I was still adjusting my life, you know. Being thrown into a different world takes getting used to. So there was definitely a period of time where I was figuring things out and, you know, had to really see what, what I was going to even do.

Jillian Curwin: And then where did you start? Because like you said, you were coming into a lot around the same time. So like what was how did you know where to start? I guess…is the right way to phrase that.

Haleigh Rosa: So, I was close friends with Virgil Abloh, who started Off-White, and Virgil and I were talking, and he was always so open minded and so, you know, inclusive and, and really just, like, so different than everybody. He was genuine about it. And one day we were just messaging and I was like, “We should do, you know, this campaign or something.” And he was like, “Okay, say the date.” And he was like, “How about we make it activewear though? Because, you know, people in wheelchairs aren’t associated with swim and activewear.” So that was his messaging for it and that's how it all started.

Jillian Curwin: That's amazing.

Haleigh Rosa: Yeah. And then, you know, we were bouncing back ideas. He was like, “What do you want to name the campaign?” And I said, “For everyone.” So that's how my foundation name got started and that's how I chose the campaign name.

Jillian Curwin: That's incredible. Let's talk more about the foundation. What is it? What do you do? What are you working towards?

Haleigh Rosa: So the foundation is in its baby stages. So it's called foreveryone, like I mentioned. And, you know, the goal is to just give back to people with varying disabilities. I didn't want to do, you know, only people with spinal cord injuries just because I have a spinal cord injury. I didn't feel like that was fair. It didn't, you know, no pun intended, it didn't sit well with me. So I, I, you know, I wanted to open it up to basically everybody with a disability, you know, and that can look like helping with mobility aids, it can help with inpatient outpatient rehab therapies,it can help with supplying those rehab therapies with what they need. I would love to give back to recreational activities. You know, I just went adaptive skiing for the first time. And I think it's important that people try things that they think they might not even want to do, because if you can't do it, quote unquote, normally or how you used to, then how can it be fun? Well, I just did it and it was so much fun. And I want other people to be able to do those things also.

Jillian Curwin: I couldn't agree more with that. I think that, you know, like, thinking back to my younger self like, there’re so many things I wanted to do and pursue, but just because I didn't see myself, or didn't even see other disabled people, let alone other little people in those spaces, I never thought I could. And now here you are, just saying it doesn't, like we can do it, like there's nothing stopping us.

Haleigh Rosa: I mean, yeah, listen, on the mountain, it was me in the adaptive ski and an older woman with an adaptive…I guess it was like a walker type thing that she was skiing with. It was pretty cool. I could have looked at it, and I did think about this, I could have looked at it and stopped right there and said, I'm the only one on the mountain that I see like this. This stinks. But instead I chose to just have fun, you know? And I think once you free your mind of what other people are looking at or care about or think like, you're just able to be so much more fun.

Jillian Curwin: Which is so important. I think it's hard to do.

Haleigh Rosa: I'm not saying it's easy. It's definitely very hard.

Jillian Curwin: Absolutely. I think it comes from, a lot of times, even though our community is so diverse, we're the world's largest minority like numbers wise, there's so many of us, but so often we're often like the only disabled person in a room. We still live in a predominantly non disabled society that has created an environment that does not meet our needs, that isn't accessible. And, you know, which is why I think that with representation and like, seeing that, and even if we don't see it like, making people see us in these spaces where they think we don't belong is so important.

Haleigh Rosa: I agree. I totally agree. I mean, everything you're saying is right on target. And that's, you know, that's why I, at this point, I just keep going in the hopes that someone else sees it is influenced to do something fun, better, be happier. And that's really all I can do.

Jillian Curwin: Of course. And I think you're doing an amazing job at it for sure. And I think, again, like, with talking with you when we talk to the college students, I think you can tell how much they're listening and how much they care and want to learn and want to do, like, create change in this industry that affects everyone. Everyone gets dressed every day. And yet for a lot of us, we can't like…we're not designed for.

Haleigh Rosa: At all. I mean, hardly. Let's…Hardly, let's call it.

Jillian Curwin: Yeah, it's…there are steps, there needs to be strides, and a lot more of them. I’ll say that.

Haleigh Rosa: It goes one of two ways. You know, it's either super adaptive or non adaptive.

Jillian Curwin: Can you describe, like, give more of a concrete example of like super adaptive?

Haleigh Rosa: Yeah. I mean, listen, and don’t, I think that the things that are super adaptive are great for the people that need it. Like, so there is no hate on my end. I think they're amazing for the people that need it, but not everybody needs something, like I mentioned, super adaptive. So let's say, you know, I don't necessarily need Velcro on my jeans, but I do need you, to know, that I'm sitting the whole time. So the length in certain areas has to be different, you know? It's things like that, where I'm like that, it would be nice if that was just already there so maybe I didn't have to go pay out of pocket to get things fixed up on their own.

Jillian Curwin: Right. I think, and again like, super adaptive like, is great. We're not like…we want, we need that. I think the limitations to what we're seeing in terms of super adaptive right now is that it is so focused like, some of it is so focused on just like, addressing the needs of one disability. The access needs for clothing that, and there are so many other disabilities like, for me, with a lot of like what we're seeing in the adaptive design space right now, it doesn't work for me. It doesn't work for people with dwarfism. So like, they're…super adaptive seems very like, like too focused, almost. I don't know if that's the right word for it.

Haleigh Rosa: Like they picked one thing and now that's it, you know? It's amazing. Like, listen, if you need, if you're, if you have a port and you can get a shirt that easily helps you access your port. Amazing. You know, like, five stars. Love that. But, you know, for us, I feel like me personally and, as you said, there is really not much out there.

Jillian Curwin: Right. And that's not to demotivate anyone who is doing the more super adaptive…those brands to not do that. Please keep doing that because you are meeting the access needs of disabled people, so many people. Just don't limit it. Don't limit your scope of what is possible in the adaptive design space. Please.

Haleigh Rosa: Yeah, just let us in. That's all we're saying.

Jillian Curwin: That's all we're saying. And you know, we’re at a time now like May, we saw with, in British Vogue like, we just saw, they did their disability issue for May, which was outstanding and took my breath away. And it's like, I want to see that come here. I don't know if that's…

Haleigh Rosa: I mean, it was great. It really was.

Jillian Curwin: If you haven't seen it on social media or like, I'm trying to figure out how to get a copy of at least one of the issues. I really want all the covers, but I'll settle with just one. But it was truly, like, it's revolutionary that, what that issue did because you’ve, we’ve seen disability like that before.

Haleigh Rosa: It was beautifully done too. You know, it was, it didn't have like, a sob story. It was great.

Jillian Curwin: And it's like you see that. And at the same time, you know, we're recording this. It's the first Tuesday in May. So yesterday was the Met Gala where, you know, the iconic Met steps, and there was no disability representation at fashion's biggest night.

Haleigh Rosa: Got to love that, right?

Jillian Curwin: Got to love that. And it's like they've had just like…I know Sinead Burke went, I think that was the year before the pandemic hit, and she helped make it accessible and I just kind of want to be like, what happened?

Haleigh Rosa: Yeah, I mean, it's a hard one. It's, it's an interesting one. I think, you know, there's always room for improvement.

Jillian Curwin: There's always room for improvement. We just need people in the industry, especially those who are saying we want, we champion inclusion, we champion diversity, to be like, okay, now show us what you're going to do for disability, because disability is a part of that.

Haleigh Rosa: We have a whole nother year. So let's go. Let’s...

Jillian Curwin: I'm ready for it. I want to see it.

Haleigh Rosa: I'm like, let's start working on it now.

Jillian Curwin: I feel like if they just redesign the steps every year like, there is a way for them to build a ramp.

Haleigh Rosa: Of course, 2023 people. I am not having the excuses. Of course there is a way to build…If you can do all of that, you can build a ramp.

Jillian Curwin: Exactly like what are we doing here? Why? Like, what are we doing here?

Haleigh Rosa: Those, those ramp excuses. I look at so many places and I’m bothered by that because I'm like, you're kidding. It would have been easier for everybody if you just had a ramp, not just [for] people with disabilities.

Jillian Curwin: Right. And that's like…the thing that I think people don't understand in general about like, making things accessible, it doesn't make it then inaccessible for non-disabled people to use. It just makes it so we can use the space.

Haleigh Rosa: It's also like, so funny to me. It's not really funny, but it is like, in retrospect, to be like, look at it and laugh. So much of these like, ramps and like, accessible areas are like not covered. So if it rains, hold on, let me be the one in the wheelchair to get soaked. but everything else is covered. But no, me, I have to go home soaked.

Jillian Curwin: Because it's like, disability is so often, I feel like, an afterthought or an after-afterthought.

Haleigh Rosa: I was just going to use that word. It's just an afterthought. And like, maybe that's why we need to be at these tables, because people don't even think about these things.

Jillian Curwin: Mmmhmm. It's why representation is so important and so, like, kind of circles back to what I want to, what I really, what the heart of what I think we're going to be talking about.

Let's talk SKIMS.

Haleigh Rosa: Okay.

Jillian Curwin: Let's talk…So first, how did, like, what was the SKIMS campaign? How did you get involved in it? What was your experience like shooting it?

Haleigh Rosa: The campaign was for their adaptive undergarments, bras, underwear. And I had an amazing experience, to be completely honest, from start to finish. It was truly great. I don't have one bad thing to say. SKIMS did an incredible job, you know, from organizing everything and making sure everyone felt comfortable, to the product, the product itself. You know, I understand, you know, it's not one thing fits everybody like we mentioned, but I found the product to be great. It was comfortable, it was cute. It was something that I would wear with or without an injury, you know. I thought it was a great experience.

Jillian Curwin: Which is amazing. And the shoot like, the campaign, looked incredible. And the fact that, you know, disability is rarely, if ever, seen as sexy. And so for a brand like SKIMS to develop adaptive lingerie, to feature you, and I know there was a, I think there was...

Haleigh Rosa: Yeah there were, there were a bunch of people, especially now that they've gone back and added more collections and more people have modeled for them as well. Yeah.

Jillian Curwin: Which is, it's incredible because I think, you know, people are like, disability can't be sexy. And finally you have a brand saying actually, actually no.

Haleigh Rosa: People can hate on it all they want though and say it was a money grab. It was, this was that…SKIMS is a, is a brand. At the end of the day they are there to make money. But if you're smart, you will capitalize on the people who need these things that aren't being designed for. So I'm not going to hate on it. I think it's genius.

Jillian Curwin: Disabled people, disabled women or disabled women and people who identify as women, disabled people in general. wear underwear, we wear lingerie. We also want to feel sexy. We are, we have every right to feel sexy in our bodies. So for, and again, we're the world's largest minority. So we are a business, a customer… I can’t think of the right word... A demographic that is...

Haleigh Rosa: We're big customers. You know, there is a large, as you said, demographic that needs this stuff, wants this stuff. And as we're applauding every other brand that's doing the most to reach accessibility, I got to applaud them because why wouldn't [they] want to corner the market?

Jillian Curwin: I'm going to give them my money if they're going to design for me or design for…like…I'm going to give them my money.

Haleigh Rosa: Yeah. Take it. It’s yours.

Jillian Curwin: Absolutely. It's like it's it's a no brainer if you design for us.

Haleigh Rosa: I’m buying.

Jillian Curwin: Yeah. But someone disagreed. Someone. Someone disagreed. So I will let you explain what happened.

Haleigh Rosa: Okay. I, let's say, woke up to a text message. First of all, let me preface it with I go to bed super early. So when I say I woke up, I was woken up at like 10 p.m. by a text message from one of my best friends saying you have to watch this video. Candace Owens used your image talking about SKIMS and the campaign that you did. And my first reaction was, who's, who the fuck is Candace Owens? I like genuinely...second reaction was, I'm too tired for this shit. I'll deal with it in the morning. And by the morning I had, you know, text messages from friends in Canada, friends, you know, all over being like, are you going to respond to this? And I really didn't know what to do because, yes, I wanted to respond, but I didn't know where to respond. I'm like, who is this person? Like, what does she even do? And with a quick background search, you can kind of see what her gimmick is, kind of just bringing people down. Negativity, not my thing, but to each their own. So I kind of always had TikTok and never really made a video because I just like, didn't, I don’t know what... I didn’t, like, know what to make ever. I did think that was the largest audience to reach, which is the only reason I chose TikTok like, over Instagram to, to, you know, say something to her. And I just made like, a quick little video letting her know that we're not pathetic losers like she thinks we are, and that she is, in fact, a little uneducated, let's say. And, you know, if she had done a quick Google search of SKIMS, she would have seen the word adaptive, if she looked on their Instagram. And that shouldn't even matter. My whole thing was one, why are you so bothered? Like, who hurt you? And two, you're uneducated. You didn't, like, you want to call yourself like, a journalist or whatever. You didn't research for 5 seconds because if you did, you would see it was adaptive. But the thing that got me the most is not only did she not want to see people with disabilities being used for campaigns showcasing adaptive clothing, she doesn't want to see us anywhere. She doesn't believe we should be in campaigns for adaptive clothing, anything, you know, regular clothing. She doesn’t want to see us in ads for a perfume. She, she simply doesn't want to see us. That was my issue. So, yeah, that was, you know, the bigger gripe that I have with her, I think. I don't, you know, I don't think she's ever changing her views. I'm not sure if she truly believes it or if she just does this for like clickbait. But yeah, that was a wild one.

Jillian Curwin: That was…yeah. I, I mean what she said, and I don't want to like, give her as much airtime as, you know, any, but like what she said was absolutely atrocious. And I, when I saw your response, I saw your response first, your TikTok. And then I think the one great thing about TikTok is that you can directly respond to someone's video and you can't do that on Instagram. Like, you can't stitch a video on Instagram, but you can on TikTok. So you can kind of see what the person is responding to. And yeah, like you said like, she didn’t, it wasn't about it being adaptive. It wasn't, you know, it's like she's just truly, she doesn't want to see disability, she doesn't want to see. And the some of the comparisons she made, and I don't remember them exactly because this was a little bit ago, I was just like…

Haleigh Rosa: I mean, she brought up Lizzo. Lizzo shouldn't be in a bikini. I'm like, who who the fuck are you to say Lizzo shouldn't be in a bikini? Like, why? Why? Because her body doesn't look like yours.

Jillian Curwin: Right? Like, and it's just...And I was like, I'm also like you. I'm not very active on TikTok. I think I made my first video like…I have had an account to scroll through, but like, actually making content on TikTok is still very new to me. I'm like trying, and like, I love doing it but like, I'm just so bad at like, being persistent with it. But it was, I think her video was the first one that I did a stitch as well. And I talked about, because part of me felt that to get into this conversation, because so many I saw so many people in our community speaking up, speaking out, calling her out, rightfully so, and being like, this is wrong. We'll get to, I think she did respond in a way. We can get to that in a second. But like, seeing so many people respond and a lot of these people in the community were wheelchair users. And for myself, as someone who's not a wheelchair user, I didn't want to take that space away because again, this product isn't designed for someone necessarily with my type of disability. But what I wanted to talk about is why representation, why just seeing you in a campaign, it didn't matter what the campaign was, was so important that representation is everything.

Haleigh Rosa: Yeah, she, she chose to belittle it instead of build it up and say, you know, this is great. But that's what she does. That's, that's her whole M.O..

Jillian Curwin: That's yeah, that's who she is. She's not changing. But someone, when I posted that TikTok, and it was my first time again stitching, and someone had responded and based off the photo that wasn't a photo of themselves, based off like…their photo was the wheelchair symbol, so, and their username indicated that they were disabled said…I'm going to phrase this nicer than how they said it. I don't remember the exact comment, so, like it was very wrong for me to say that representation is everything. There are so many bigger issues to talk about, and bring up very serious issues that do affect our community. And the points that they made were absolutely correct. But from, and you know, in light of, in comparing like, I think they were talking about like the mortality rates for certain types of disabilities in certain situations. Like, absolutely correct in saying that those issues are incredibly important and that…But my thing was like with representation though, if we still don't see us, those issues aren't talked about like we are truly just not seen as a community.

Haleigh Rosa: And one thing doesn't mean that we're taking away from the other. You know, I'd like to think of it as this is so new for, for it to even be such an open topic, you know, we're really taking on everything at once, which hasn't happened like this, I feel like, in a very long time. So, so yeah. I mean, pick your favorite topic and be the one to advocate for it, because not everyone can touch on everything.

Jillian Curwin: No. And I think, you know…Yes. Is seeing ourselves like, in lingerie as important as addressing some of the more, as addressing more of like…I cannot think of words today. As addressing some of these issues raised in the TikTok comments? Yeah. Like, they're not necessarily things that can be compared. But I think it does circle back to representation and being seen not just maybe in a campaign, but just as a community, having people talk about these issues, especially because so many of our issues affect other communities, other minorities, or society as a whole, like the majority of people.

Haleigh Rosa: No, I get, I fully get what that person was saying. But also, no. To, to dig a little deeper, you know, if you really want to look into it, it's not just about seeing ourselves in these photos. You know, everyone talks about how important mental health is these days. And I can tell you, as someone who laid in bed crying every day for three months, my mental health was not great. So seeing representation, you know, does help with that. It can help change someone's outlook. It may change someone's entire life. So while it's not a mortality rate, it is important.

Jillian Curwin: Right. And I think it makes it okay like, not okay to talk about, but I think like seeing it is like, oh, no, this is something that...

Haleigh Rosa: Exists.

Jillian Curwin: Exists. Exactly.

Haleigh Rosa: Hello. We're here.

Jillian Curwin: Right. And I think especially so often, our community, society doesn't want to see us. Society doesn't want to talk about us. And I think we are at a time I mean, you know, we're celebrating, the ADA is turning 33 this year. But, like, think about that. Like, the Civil Rights like, we were… read about the civil rights movements that happened. It seems like another generation. It was like, generations ago.

Haleigh Rosa: Yeah.

Jillian Curwin: The ADA was passed not even a generation ago, and yet not even like...

Haleigh Rosa: One person can't do it all, but together we can do everything. So, you know, just because we're talking about representation in media and whatnot does not mean someone else shouldn't take on their important topic.

Jillian Curwin: Exactly. And like, I've said this a lot of times, like all issues, at least on the ballot, and if we're going to focus on the more quote unquote serious stuff like, are disability issues. So if there is something that you are passionate about, you know, and I think social media is an incredible tool for us to build these platforms for ourselves and for and advocate for ourselves, for our community. I see, that's one of the things I love about the disabled community, using what happened with you as an example is that when something happens, we are there for each other. Even if we don't know each other, if we just see it trending, if we see someone talking about it, we are boosting, we are celebrating, we are amplifying these voices because again, society does not want...It tries so hard not to listen to us and you know, it's like going back to being uneducated and being ignorant. I think society definitely is uneducated, but a lot of times also chooses to be ignorant.

Haleigh Rosa: Yes, I would agree with both of those statements. Definitely a lot of ignorance, but we can do better as a society educating people who don’t have disabilities.

Jillian Curwin: And it's like you need to listen. Like I, you know, we lost Judy a couple months ago and when it happened, like, no, no major news outlets really gave it the attention. Like, it wasn't talked about - her and her legacy. Like, what she did. I can't put it into words, and yet when like…I wasn't surprised. Like, that's what made me sad is like, that it wasn't getting the coverage.

Haleigh Rosa: I didn’t expect them to, you know, put spotlight on it basically.

Jillian Curwin: And it's like…

Haleigh Rosa: It's unfortunate.

Jillian Curwin: It's so unfortunate. It's like, and again, it's, it all goes back to representation. It's why we want to see ourselves in lingerie campaigns, is why we want to see ourselves in...

Haleigh Rosa: Everywhere. You know, this isn't, you know, a one stop thing like, we deserve to be everywhere. We are people living life and it may look different than someone else's, but that's okay.

Jillian Curwin: Yeah. And again, we understand that there's a lot to learn. I'm a disabled person. I don't know anything else. And I'm still learning.

Haleigh Rosa: No two spinal cord injuries are the same. It doesn't matter if you're the same level, it's not the same. You know, we're not genetically built the same. So how could it possibly be the same?

Jillian Curwin: Exactly. Like, we, you know, we're not saying that we are experts and we're saying that other people need to learn, because we're still learning, too. But we need society and again, we live in a predominantly non-disabled society like, needs to learn, needs to listen, needs to learn.

Haleigh Rosa: They can definitely do better in a lot of things.

Jillian Curwin: There's so many things and it's like, we just, you know, we just went through a global disabling event with the pandemic. And yet it feels like with what was happening before, you know, with seeing Sinéad at the Met Gala, going back to that, and knowing that like, that was happening and it felt like the pandemic happened, obviously the world shut down, but then coming out of it after seeing so much social change, it almost seemed like, in regards to disability, society was like taking a step back.

Haleigh Rosa: Yeah, I mean it definitely has like, an ebb and flow feel to it. But I would say in general, you know, we have made progress. And for that I'm like, happy and thankful and I'm confident that with our group of people pushing for a change, we’ll continue to, to get that.

Jillian Curwin: I mean, I know, I mean, our people are resilient. And when we, again, when we do come together, we are very loud and we'll just, you know, you can't ignore us. Like we're not settling for that. I don't think, I don't think we ever did. But I think especially now, like...

Haleigh Rosa: We’re a tough group of people and everyone that I've met, you know, through having this injury and being part of this community, is so strong and wants to see change. So I don't see anybody backing down any time soon.

Jillian Curwin: Nope, not going to happen.

Um, so looking ahead though, because we're talking about like, the future and everything, like, what are you working on next? What are you, what are you looking forward to personally?

Haleigh Rosa: I'm looking forward to getting my foundation off the ground. Honestly, I really, really, really love helping people. And I want to be able to give back as much as I can. So that's, you know, a big labor of love that eventually will take off and we'll be good. Other than that, you know, I just want to continue showing, you know, my followers my authentic life and, you know, be open to questions and, you know, helping people understand that just because I have a disability doesn't really make me any different. You know, I still have fun. I still do the things that I want to do. I still hang out with my friends. I do the same normal things a 34 year old woman would do, except for I'm not married, so I mean, I'm single. So if anyone has a guy, [unintelligible] let me know. Because that’s one thing I don't have but yeah, you know, I just want, I just want to be a view for people to see what it's like to have a disability but also not be scared of my life, if that makes sense.

Jillian Curwin: Yeah.

Haleigh Rosa: I think if you just show your authentic life, people can see, like, okay, she uses a wheelchair, but like all that changes is she's sitting and I'm standing. That's not all that changes. I'm not going into the nitty gritty medical stuff of having a spinal cord injury. But, you know, as someone if you, if you want to go to dinner with me, I can go to dinner with you. You know, it's not gonna be weird. It won’t be weird because I'm in a wheelchair, is what I'm saying. I want to show people that side of life.

Jillian Curwin: Right, that living with a disability is in a sense, like it's...

Haleigh Rosa: This is normal to me. It's my normal.

Jillian Curwin: Yeah, it's normal. Like it's our normal. We don't know…

Haleigh Rosa: I'm like, I know, different, but at this point it's been eight and a half years. Like this is my normal. So when you're like, oh, do you need me to push you…? Like, no, I'll let you know when I need you to push me.

Jillian Curwin: Right. Exactly. It's like, you know, whether we have known this is a new normal or we don't know, we’ve never known anything else like, disability is normal.

Haleigh Rosa: It's my way of life. So, you know, there, there are times where, yeah…I'm a little more tired because of certain things, but, like, everyone has those days. I'm not going to beat myself up over it and call it, you know, whatever. I just, I just want people to see, like I said, that like, people with disabilities can have fun and do fun things and wear makeup. And, you know, we even wear shoes. Just because we're in wheelchairs doesn't mean, you know, like these little things that people are like, huh? Like, I just want to show my life.

Jillian Curwin: Right. It astonishes me, and it doesn’t, what people like, can't believe about disability. Sometimes.

Haleigh Rosa: I'll never forget someone in the comments after that Off-White campaign was like, “She's going to sink” because I was in a pool and I was like, listen, I'm not going to sink. Like, let’s do a review here. They didn’t, like, throw me in and like, you know, there you go, girl.

Jillian Curwin: Just the things you did for a photo, you were you.

Haleigh Rosa: I risked my life. Yeah, okay. Real funny what people think. I'm just like, no. That's just not you know, that's not the case. Thanks for the concern.

Jillian Curwin: Exactly. Not wanting to necessarily talk to her again, but speaking to other people who may choose ignorance. Like what would you say? Like, looking back on what happened, because it's now we're about a month removed or more than a month removed from what happened. Like looking back, what would you want to say to those who still just don't get it?

Haleigh Rosa: You know, there is a certain population that I think will, will never get it because some people have really closed off minds, which is unfortunate. But to the people who are, you know, open minded, I would say, ask questions, you know, get to know people who you might not talk to, be open because typically, you know, I can speak for myself. I'm very open. So if someone asked me a question about my disability in a genuine manner, I'm going to answer it honestly. I would also say, you know, this could be you one day. You know, this could be any of us. I never in a million years thought I would be paralyzed. I didn't leave that morning and say, I'm going to go get paralyzed today. So, you know, don't be ignorant because it's important to, to learn. And the only way to do that, I guess, is, you know, by asking questions and educating yourself.

Jillian Curwin: Exactly, exactly.

Haleigh Rosa: I won't be all uncool people. Just ask, ask your question.

Jillian Curwin: Yeah, I feel like so often when we talk like, people would be like, I'm speaking for myself, if someone asks a question and it's coming from a genuine place of not knowing or wanting to know more, what…? Like, I'm more than happy to answer. I have this podcast and this platform to answer questions like…

Haleigh Rosa: No,100%. If it's a genuine question and someone like, wants to know, I'm going to be honest and answer. It could be something as small as literally…I was leaving my apartment the other day and some guy was like, “Is that your wheelchair?” And I'm like, in my head I’m like, duhhh. But he was like, “Is there a place that I can, like, rent one for somebody?” Blah blah blah. I was like, all right, this guy actually has like, a real question. So let me like, you know, regroup and just answer him and tell him no, this is mine. But yes, he can like go buy, you know, a folding wheelchair somewhere. But yeah, you know, if someone has a genuine question, I'm obviously very open to answering it.

Jillian Curwin: I think we, I’m not gonna speak for the whole community, but I think a lot of us are.

Haleigh Rosa: Yeah, I would agree with that.

Jillian Curwin: Who do you look up to?

Haleigh Rosa: That's a good question. Does it have to be someone with a disability or are we talking like in general?

Jillian Curwin: In general, who do you look up to? It doesn’t, they can be disabled, they can be non-disabled.

Haleigh Rosa: I would say one of the people that I’ve look- looked up to and still do, even though he's no longer with us, is Virgil because he was one of the most genuine people I've ever known. So open minded, wanted to learn, was so kind and caring, compassionate. And him and I, you know, always talked about the euphoric feeling you get when you like, give back and help others. He was just someone that I was able to like, have these conversations with. And, you know, I hope that I can be half as kind in my life as he was to so many people.

Jillian Curwin: I can say you are. And he was truly an incredible, I didn't know him, but like he, I was always just blown away by his work. And I definitely saw that vision. And so I think you are definitely carrying on his legacy.

Haleigh Rosa: I would love to say that. But I…literally he was so kind. I don't think I can even, you know, touch his kindness.

Jillian Curwin: I'm saying you're doing it. So…

Haleigh Rosa: Thank you.

Jillian Curwin: You're welcome.

Are there any questions I have not asked that you would like to answer?

Haleigh Rosa: I think we got everything.

Jillian Curwin: Okay. Where can people follow you? See what you're up to?

Haleigh Rosa: So my Instagram and my TikTok are both the same. It's @halrosa. H-A-L-R-O-S-A. Kept it simple for everybody.

Jillian Curwin: Perfect, and I will have links to that in the show notes and the transcription page. So go follow. Go see what she's up to. She's doing some incredible, beautiful work. And again, like you got to see the, got to see disabled people, so go follow.

Haleigh Rosa: You got to look. Some people might not want you to, but I say, come on over, come take a look.

Jillian Curwin: Yes.

Haleigh, this has been an incredible conversation. You have to come back on to talk again because it was just truly a joy talking with you always. It's always a pleasure talking with you. So thank you.

Haleigh Rosa: Thank you. I know it was so fun. We should do this again.

Jillian Curwin: Yes. It's not a question of if. It's just when.

Haleigh Rosa: Part two coming soon.

Jillian Curwin: Part two coming soon. Stay tuned.

But before we go, I do kind of like final fast favorites, which is my version of an icebreaker. I like to do it at the end because more fun that way. So again, final fast favorites. I have five categories and I just wanna hear your favorite in each one.

Haleigh Rosa: Okay.

Jillian Curwin: All right. Favorite book.

Haleigh Rosa: The Long Run. I read it in inpatient rehab. It's about a guy who got injured. It's based on a true story. I loved it. I cried, but it was great.

Jillian Curwin: Okay. Favorite TV show.

Haleigh Rosa: Lenox Hill. Did you watch it?

Jillian Curwin: I have not. But I'm very, I have…it's on my like, queue of things I need to watch.

Haleigh Rosa: Oh, well, this could be like people are gonna think I'm weird, but also The Affair. That was one of my favorites.

Jillian Curwin: That I've seen. I didn't finish that, but that was, so what I saw was so good.

Haleigh Rosa: Okay, those are my two all time favorite shows.

Jillian Curwin: Okay. I love that.

Favorite drink.

Haleigh Rosa: Alcoholic or non?

Jillian Curwin: However you choose to interpret that.

Haleigh Rosa: I really only drink water or tequila.

Jillian Curwin: Yes. Oh my gosh. We need- We’ll talk...

Haleigh Rosa: Like, I'm not like a Coca-Cola girl. I just water or tequila and I'll leave you alone.

Jillian Curwin: Well, we're, we're going to talk later about that.

Favorite piece of advice you've ever given or like your go to advice that you give.

Haleigh Rosa: My dad since a very young age, always tells me have fun every day.

Jillian Curwin: Love that. 

Last one, it's a little similar, is favorite piece of advice you've ever received and taken in.

Haleigh Rosa: I'm going to go with something that's not. I don't know if it's necessarily like a piece of advice, but someone. I really wanted a job probably 2 years ago. There was a specific thing I wanted and a specific, specific person I wanted to get in touch with for this and the person that I was kind of reaching out to, to like mentor me through it basically said like, it sounds cliché, but like don't stop emailing like, as in like don't give up. And I think so many people get discouraged so easily by like, the lack of a response or whatever. But the truth is, all of us are just busy and sometimes things fall through the cracks. So I'm going to go with the, the don't give up and keep going and you'll get what you want.

Jillian Curwin: I really like that. And that is the perfect note to end on.

Haleigh, again, thank you so, so much for coming on. Again, this is just part one. You're coming back. It's a matter of when. We're going to drink tequila. It's going to be great. We're going to set a date for that.

The final, final thing I just have to ask of you is for you to remind my listeners in your most fierce, most badass voice possible that height is just a number, not a limit.

Haleigh Rosa: Height is definitely just a number, not a limit.

Jillian Curwin: 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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