Jillian IlanaJanuary 30, 2023Comment

Gabriella Amaya On Getting Mad At Our Disability And Embracing Our Scars

Jillian IlanaJanuary 30, 2023Comment

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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 will 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 Gabriella Amaya. Gabriella is a disability advocate and host of the Re-Define podcast, where she and her guests share their experiences about living with a disability and how they re-define what disability means to them. We discuss the fact that disability can be messy, the importance of allowing ourselves to be mad at our disability, seeing our scars as beautiful and much, much more. Let's get into it.

Hi, Gabriella.

Gabriella Amaya: Hi.

Jillian Curwin: How are you?

Gabriella Amaya: I'm so good. I'm so excited to be here. How are you?

Jillian Curwin: I am well. I'm so excited to be having you on the podcast and very excited to be talking with you. To start, for my listeners who may not know who you are, why don't you tell them a little bit about yourself?

Gabriella Amaya Sure. So I'm Gabriella and I do some work for the disability community. I actually have my own podcast called The Re-Define Podcast. I also am a therapist. I'm a licensed speech language pathologist. I graduated not too long ago from Columbia University with my Master's and I currently live in New Jersey. I, I really, honestly, the work that I do right now has been really focused on bridging the gap between disability identity and how we can intertwine that with therapy. So, just a little bit about me. I'm also Latina.

Jillian Curwin: Yes. I love that. We're going to delve deep into a lot of what you just said and what you do.

But first, it's a question I ask all my guests is, how do you, Gabriella, define being disabled?

Gabriella Amaya: I love that question. For me, being disabled has really meant being honest with your relationship with your disability. I think a lot of the time we like to… I think honestly, when you're coming in to look just like, living and learning about your disability, if you've lived it, live with it your whole life….

Let me preface from your relationship can be really complex. So I think being honest and upfront with yourself is a really good way to learn how to embrace your disability in a real, real way and avoid, like, toxic positivity.

Jillian Curwin: Right.

Gabriella Amaya: So yeah. I think to be disabled is to embrace who you are within your experience and living with disability. Like, very honestly.

Jillian Curwin: I agree with that. It's interesting you touched on the fact of like being born disabled versus not. Because for me, as someone who was born with a disability, and I don't know and I want to hear your experience with it, it took me a long time, really until like a couple of years ago, for me to like, truly identify and start to embrace being disabled and learn what that means for me. Whereas before, I would always just say I'm a little person, I do things differently. I'm just short. Which is all true. But it's taking away from being disabled. Like, I didn't necessarily go that step. I knew I needed the accommodations and everything. But it wasn't because in my mind that I was being disabled and I found that with like, talking with my community of other disabled people, and a lot of them who became disabled later on, they weren't born disabled. They were able to embrace that identity sooner, and in part because they had to, because their life changed so drastically. So I'm curious what your experience or perspective on that is.

Gabriella Amaya: So actually what you bring up is really, it's a great point. And I think for me, I had a very visible physical disability growing up. So, I actually have Ollier’s Disease. It's a rare congenital bone disease and a cause…it's basically a tumor of the bone. So growing up, I had many leg lengthening surgeries where they would break my bone, repair it, repair, break it, then I'd have to heal. And I would have to have these very, these surgeries throughout really my whole life. So when I first identified with disability, it was a very physical, visible one. And then, just as you had said, you're like, oh, like, I always identified as a little person. I identified with disability early on because of the physical incapabilities that I couldn't do sometimes, and as I got older and this is where I think I actually learned disability is a lot more, right?

Jillian Curwin: Mmhmm.

Gabriella Amaya: Than just this physical identification. I realized that it is, I think I also, I struggled with just, like you did. I was like do I…? Do I say I'm disabled? Like, because I can technically walk, right?

Jillian Curwin: Exactly.

Gabriella Amaya: I can technically jump, and do this. And then that's where I really explored more of my relationship and for me, also my disability. And I think…how do I say this? So, I also really learned that my relationship with my disability has always been ongoing. And I think I, whereas I used to identify with that physical capability, I mean, it was so very much part of my life. I think the disability, identifying with it, is having that shared experience that it's always going to be part of your life for those, again, like who have started with it early on. So like, though I could walk and I could run, I go to MRI's yearly, I have to check on my, my leg- how it is growing, is there any changes that are going to happen to my tumors or… I had cancer in 2019. The type of cancer I had was linked to my bone disease. So for me, I realized okay like, it's not just physical, right? And then again, like you said, I think I learned more about how to identify it when I did reach out to a lot of my community. And then when I also realized, like, these two things really aren't separate. I mean, I've always been and I've always lived. It's just evolving. My relationship with disability evolved. I feel like for you it's really different. I'm actually I like, like you said, like identifying as a little person.

So like, I'll say, I think it really changed for me when I met Judy Heumann and she was like, “Oh, like you need to identify as a person with [a] disability”. And I was like, “Oh fuck. Like, I do.” I really sat down and I was like, because the truth is, I think, I think Jill is like, when no matter, and that's where I say it's like so it's such a complex question because you have your own relationship with disability, and our abilities are not the same. But I was doing work for the disability community at a really early age and it was interesting because it was like, there is something that connects us, you know? And that's where it's like, oh, it's never really, that's where Judy like, saying that to me was like a really big moment for me because I was like, I don't have to feel guilty about not being physically disabled. I am still disabled. It is multifaceted, it is complex, and I am connected to that same, to a state, a similar understanding, a different one, but also something that I think a lot of us share in terms of how we have to be advocates for ourselves or how some things are really fucking shitty sometimes, and, like, how you have to like…It's this beautiful navigation that we have to experience with disability.

So to answer your question, my long winded answer, I think it's, I think it's complicated. I think we have our own personal relationships with disability. But I think identifying as a disabled person is and can be a shared experience among us all. And like you said, for people coming later into life, I really feel like it could be a really positive or really negative experience for them because like, it depends on your perspective. And I think that's the other beautiful thing about living with a disability, especially from your whole life. If you've lived with it your whole life, you have this adaptive perspective.

Jillian Curwin: Mmmhmm.

Gabriella Amaya: I feel like people who come into it later in life, if you weren't really a flexible thinker or if you weren't really an open minded thinker, disability is going to be a trifling experience coming into it from being able-bodied your whole life, or not being different, you know? Like so…or it could be a really eye opening one like Elizabeth Jameson, for example, who got MS later in life, but is one of the most curious and amazing disabled people that I personally know.

Jillian Curwin: Mmmhmm.

Gabriella Amaya: So I think it's complicated to give you the short answer.

Jillian Curwin: It's quite complicated. And you touched on something…And I'm trying to think about the correct way to phrase it, because, again, I think it is so complex and the fact that you and me both kind of have that shared experience of like, we can walk, we can do, we have our use of our four limbs, and so much of what disability is, at least from the outside looking in, or what society sees of it, it's the wheelchair, it's the person in the wheelchair. This perception that, if you're disabled, you can't walk or you can't use all four of your limbs. And I think that kind of definitely, whether consciously or not, you know, plays into how people who can walk and whose mobility isn't necessarily impacted see themselves as disabled or not. Because society says disability, the symbol is the wheelchair. And I think that definitely plays into, at least for me, of like, why it took so long for me to say, you know, to not separate the two, to say I'm a little person, I'm a disabled person, because I used to say I'm not disabled. I'm just a little person. I used to try to insist on that, but still asking for the accommodations I need. And that's a common thing. I've noticed in some communities as well that it's like, the resistance to being, to saying that they're disabled because we, there are things we can do that society says, well, if we can do that, then we're not disabled. But then it's like, well, where do you, where do we see us? And it, like you said, it's, it's messy. It's complicated. It's messy. It's a lot of things.

Gabriella Amaya: Yeah. And that's a stereotype society puts, puts on us. Like, like you said, it's like, well, what does it mean to be disabled and, oh, I can't I can't do this. It's just like the terminology puts a lot of pressure on us, puts a lot of confusion. So as we do come more into our identities, it's our place, I think, to define it more. And that's what I'm seeing a lot in our generation, which is a really beautiful thing. Like, we're taking more ownership because we're the ones with the lived experiences here. You know, we're the ones who actually really have the genuine knowledge and thankfully are owning it more and not just looking at disability from that physical lens. Because it's not. It isn't. Neurodivergence, you know, like invisible disabilities. I still live with the disability, not a lot of people know that, you know, because I can, you know, like, it’s just, It's not all…It's just not all physical. So, it's beautiful that I think a lot of, again like, this is why community is important and it's beautiful too, because I learn still every day. I think, obviously, you know, like doing your podcast gives you just a beautiful platform to see what disability does look like and feel like and taste like. We're ongoing learners. That is what is a beautiful thing about being a disabled person. You are an ongoing learner to different kind of disabled experiences that we have. Um, so, yes. Fuck stereotypes. Fuck societal stereotypes and it's evolving. You know? Like, I feel like that’s, that's a really re-occurring theme with disability. You're just given the opportunity to adapt, to evolve, and to be flexible and open-minded. So I'm happy that we're changing some of these definitions. Especially now.

Jillian Curwin: I think we need to now. And I think, you know, like looking back, and you talk about Judy like, what she did and it wasn't taught to us. I learned a lot about what Judy did, and the incredible work of the other advocates, and about the sit-ins watching Crip Camp, which came out a few years ago. Like their history, our history isn't taught. And I learned, you know, like you said, like, we're constant learners. And for me, the learning has, and the advocacy has come from just talking to other community members, because there isn't a textbook to go to. There aren't resources in terms of like, in our education system for us to go to. So, my education came from the people who, like you, who are doing the advocacy work, who are doing the learning, who are listening. And I think that's one of the great things with social media, is that we're able to connect to so many other disabled people than we were before. And really kind of, you know, I think everyone with, or like, we're seeing all these advocates come up who maybe never thought that they would be, but just by talking, sharing their experiences, they're being advocates.

Gabriella Amaya: Mmm. Yeah. Just like, exactly like, exactly. And I think that's what's so powerful. I think that's a big motivator for me.

Jillian Curwin: Mmmhmm.

Gabriella Amaya: Because when I work with younger adults or younger teens, I'm like, you're the narrative. You're it. You, right here. And it's cute because like, so many of us and just like, anyone, you know, we're coming into ourselves, and who we are, and we're still taking a backseat as being learners. And you're honestly…being a lifelong learner is my goal in my life. And that's I think, like you said, because we're listening. We are. We're even better for that, right?

Jillian Curwin: Yes.

Gabriella Amaya: We're able to hold each other and hold space for each other. But also like, we are really… it's, it's like that little thing. It's like, I look at these young adults, and like you like you, sharing you… identifying and you really sitting with your experience here. You're what we need. Like, we need to hear from you. Like, it's a little bit of a yes, be the learner, but you also are like highkey the teacher, you know? Like…And that's where it's like. Um, I…

For, for those who really do find a little bit more of a, for…For people who identify with disability, because let's say, let's be honest like, not everybody does. And that's also okay. That's totally fine. But for those who really do, it could be a really, really powerful, powerful tool, a powerful experience. I remember when I was little, I would hide my scars because also like, coming into my, my age and also understanding what disability looked like from society. It was very different. Very. Like, I didn't feel accepted and I felt very outcasted. I used to wear pants to the beach, and I remember I would literally sweat. I would be torturing myself at the beach. I'd come home…And there was one time I came home and I was so emotionally, physically exhausted and I ripped my pants off and I was just looking at myself in the mirror and I was like, wow, am I going to do this for the rest of my life? Like, am I? Am I going to wear pants to the beach like straight jeans?

Jillian Curwin: Oh my gosh.

Gabriella Amaya: Cause I’m hiding my scars. And I was like, oh, my god. And then I realized, like, what am I teaching the next younger me? Because I remember how much I was suffering with my own image and my own coupled with disability. You know? Like, every teen has esteem growing to do, but obviously we go through it with disability on top of it. And I was like, oh my god, I'm showing the next little me that it's okay to wear pants to the beach, and that it's okay to hide your scars. And I was like, that is so painful. And it was that moment that I realized, like, I can't do that to her, that I was like, okay, bitch, you better change something like, girl, you better take your pants off. And I did. But it was a, it was a real like I'll say, like it was a “when you’re ready” moment for me. And I was just tired of being tired like, I was tired of being what everyone else needed me to be or not. Not that people told me to hide my scars, but like, the pressure that I felt and like I couldn't run. Like, there was some time I was in a wheelchair. A lot. Like a lot of kids my age were running on the playground or they were jumping in the water. And not a lot of people waited for me and I was so shy. And I remember, like, feeling like, okay, like, I can't keep up.

Jillian Curwin: Right.

Gabriella Amaya: I'm just going to stay where I am. And it was really hard for me to…it was really hard for me to get to that place. But I remember it was, being as tired as I was, but I was like, I can't just do it. I can't do it anymore. And that was a big game changer.

So what I'll say is like, that's why I love working with young teens, because it's this like, such a pivotal time for your age. It's like, when you're ready and like, if you like, you can't push yourself. And it's like, it was only because I was honest with myself that I could reshape things, you know? I couldn't be like, I want to be a disability advocate today. Like, no, I wasn't saying that at 15 or 14 years old. I'm like, yeah like, disability is great. It's not always great.

Jillian Curwin: Right.

Gabriella Amaya: Right. I know what's not great about it, but I was like, no, well, this is part of me and I, I got to love all my body. I got to love my body because there's so much there's so much like pressure coming on me. It was too much. So, I actually talked to Bri Scalesse about body talk because, like…

Jillian Curwin: She's a queen. We love her. She's a friend. She's a queen. She's a queen.

Gabriella Amaya: Yeah. And her and I actually got into the topic of like, do you talk to your body? Because like, I feel like her and I shared a lot of physical, similar physical experiences with our legs like mine…

Jillian Curwin: Yeah.

Gabriella Amaya: Would be in some physical, physical pain and the same time that my body was, it was, it was those moments that really brought me level to go, okay, I'm being so bad to this body that is literally doing everything in its power to take care of me and to heal. Yeah, this tumor is like, you know, fucking up my life a little bit, but, but, you know, this leg is still trying to heal. So, like, I would literally talk to my leg. I'd be like, okay, I know you're not ready, but like, you can do this. Like, I love you. Like I… literally, saying, like, we're going to make something out of this pain. We're going to make something out of it. I don't know what it is, but we're going to make something out of it. Um, so her and I really love body talk. And it's that…That's really what this. You know, disability is like, that all encompassing experience. It's not, oh, this is great. It's hard. It's hard. You're different, your experiences too, with esteem, I'm sure looked a lot different. What was that like for you?

Jillian Curwin: I was going to say there's so many things that you said in your story that, and it's so interesting, and the fact that you related to Bri kind of compounds the point I was going to make is that my disability is very different from yours. It’s very different from Bri's. But I also hid my scars on my legs. I also can't keep up with my friends. I still can't. I was like the girl who…Like, everyone started running. Like, I knew I couldn't do that. Like, I was constantly and like, so much of what you said, even though we don't have the same disability like I related to, I had surgical scars. I remember wearing pants the last day of school in the summer because I just did not want to show my scars. And it's like scars I know people had seen before, but at some point I just became so self aware of them and ashamed of them, for some reason that I didn't want my students, not my students, my classmates to see. And I like, and I wore, like it was…I remember it was like, one of the hottest days of the year. And I wore pants to the last day of school because I'm like, I don't want them to see this. I don't want this to be the lasting image that they see of me for three months.

And you know I am, I’m learning to be nicer to my body in terms of how I talk to it. I've gotten better at it. I was…There's definitely been points where I've definitely been mean to my body, and partly because of the fact that it's a little person's body and we don't see that representation in terms of what society says is beautiful. We don't, it's… disability representation in that sense is getting better, but we have a long way to go and some bodies in the disability community aren't seen at all.

So yeah, I have a very like it took a long time and for me to kind of recognize that what the good my body is doing for me, even when there are more days than not, that I'm very frustrated with it and realizing that those frustrations though are often caused by external factors and not my body itself. But I would take it out on my body if that makes sense.

Jillian Curwin: Mmmhmm.

Gabriella Amaya: Oh my God. That makes complete sense. Oh man.

Jillian Curwin: Yeah.

Gabriella Amaya: Yeah. That's deep and honestly what to add basically to add on to that I, I think disability is messy and it's actually probably one of the most beautiful things about it, like just a little messy, like our relationship with our disabilities are supposed to be messy. They’re supposed to kind of zigzag. And that's where, that's where I have taken a big role, a big lead in my life this last year to learn about that. I think I really learned about that this last year because I ask myself to like, for someone who's lived with their disability her whole life I…Technically my physical disability was from like, my physical limitations were really at the forefront of my disability from when I was five to like, 15. I think had my last major surgery at 15.

Jillian Curwin: Okay.

Gabriella Amaya: And then fast forward, I had about five years where like, I was really more physically able-bodied. But then my body itself like, internally still had a lot of things going on, and I still live with Ollier’s disease. A disease does not go away. And I really learned in 2019 it, hitting me as hard as it did that I was like, oh, wow. I'm mad right now. Like, I'm mad at my, I'm mad at my disease.

Jillian Curwin: Yeah.

Gabriella Amaya: Like, I’m mad at it. I'm mad at…My friend, who has the same disease, died. He had gotten cancer and he…literally spread. And like, I went into a space in my life where I was like, wow, okay, I live with this my whole life. I've, I have learned body love. I learned how to love my disease. And then it was the first time I learned what it meant to be in disagreement with it. Like, it's like I took Ollier’s out to dinner. I was like, Fuck you. Fuck you today. Like, fuck you today for this.

Jillian Curwin: Yes.

Gabriella Amaya: And, in this last year, I think because, because I was able and honest with myself in that I have a very, I have a better relationship with Ollier’s even shy, just shy of a year later like, that I can be mad at my disability, you know. That it is, with me, and that I, I can be. And that's where it's like you have more autonomy, you have a lot more space to breathe like, more breathing room.

Jillian Curwin: Mmmhmm.

Gabriella Amaya: And, like, I love that you were, like, I'm getting better at this. You know, it's because it's not a linear experience like…And just like you said like, we do have different disabilities, but I love that we both hid, we both hid our scars. Like that's where that disability identity connects us.

Jillian Curwin: Yeah.

Gabriella Amaya: But that’s where, also, we're taking…I take a backseat in learning what acceptance really looks like for you, and feels like for you, because we're complex people, we are complex beings like that's what we…We need to learn about each other. You know, um… And that's what I really feel like. I, I loved this last year because now I feel like I'm ready for when I'm mad at my disability next. Like, I’m fucking ready for it. Like, I want it like. Oh, I don’t know that I want it. I really don’t want it.

Jillian Curwin: No. I know what you mean, though. Yeah.

Gabriella Amaya: I'm like, all right. Like, I can be mad and, like, I can be in this, but I can also navigate through it. Like, I can maintain momentum because I'm able to be that honest with myself.

Jillian Curwin: Right. And you touched on something I think is not talked about at all in like, our upbringing or like, or like…giving us permission to, is to be mad at our disability.

Gabriella Amaya: Yeah!

Jillian Curwin: I think that's not discussed, or it's like something that's like, you know, we're supposed to be positive.

Gabriella Amaya: Toxic positivity.

Jillian Curwin: Yes, exactly. And I'm thinking about like, if I was just allowed to be mad at my disability...

Gabriella Amaya: Damn.

Jillian Curwin: Yes! [laughter] Because I felt like I couldn't be. I felt like you're told like, it's not. You're not supposed to be. Like, this is just, this is how you are. And it's like, why can't there be days…? Cause then I would be mad because I would be mad, but I would feel like I'm not allowed to have that emotion. And that’s not okay. I think it is okay to say I'm mad at my disability, I'm mad at being disabled. And then say, okay, now what…can I use this anger? Because anger is powerful. Being angry is fucking powerful. So, like to give yourself permission to be angry at something we can't change, but then to channel that into something we can. Like, where would we be if we would actually just said, gave, if we were taught from a younger age, and I love that you said that you were, you know, you gave your, you talk about, like, your younger self and changing your mindset because that's so much of what I think a lot of us advocates do is like, speaking to our younger selves again, because there weren’t those people speaking to us and say like, it's okay to be mad at your disability. It's okay. It's okay to be mad to be disabled.

Gabriella Amaya: And still identify with it. And still do positive things with it. And still maintain momentum. And still be sexy in it. And still be like, you know, and still have good things in it. It's still there. They coexist. Like, they coexist. We need to make space for every single emotion and every experience and that's where I feel like it's our superpower like, that is a superpower. That's where I feel sexy in having a disability. Because I could fucking do that, I feel powerful that I can do that. I feel really good. It's such an honest thing. And I'll say it's not something that I learned right away. Like, it's like, through those things, through those negative experiences, through literally talking to me. A year ago, I was like, all right, I'm in it. I'm down in here. Great. It's quiet. It's heavy. All right. Well, Gab whenever you're ready, whenever you’re ready, just look up. What does it look like for me right now? And like, that's the other thing I admitted to myself. And I'm going to really talk and pinpoint honesty. That's what, that’s what I love. I’m like this is what I love…this is the, my favorite part about living with ta disability. When I’ve had my scars that I've had my whole life, right?

Jillian Curwin: Mmmhmm.

Gabriella Amaya: I did so much work to love them, to let them… I have all these scars on…To preface, I have literally scars ridden on my whole right leg. And I did all this work, and literally I love my scars. I think they're sexy. I don’t even think about them. I forget that I have them. I, like, and people ask me about them and it's completely such a comfortable part of my body. And in 2019, when I had to remove an ovary, they had to put scars on my stomach. And I remember after my surgery I was like, I looked at my belly and I remember for the first time in a long time, I felt insecure about my scars. I was like, who is she? Who is she? I don't know who she is. And that's when I was like, oh my god, learning moment. Holy shit. Take a back seat. And I said, wow. Like, I can still feel insecure about new scars. I can still, after even, after all this work. And that's when I was like, damn Gab. There's a lot more to explore here because I could tell you for sure shit, my legs, my scars on my legs are…I love, like literally love them. I will walk naked in front of you today if I needed to, to show my legs. I have no shame. There's no shame. And the minute I realized that I felt insecure about my, my belly scars, I looked like I have a second belly button. I was like, wow. How many years later, these scars need that same love…

Jillian Curwin: Right.

Gabriella Amaya: That same work. And that says, like, yep, disability is ongoing. It's maintaining momentum and, and being honest with yourself. And I did the same work. I mean, that work is different. You just have to show up for yourself, which honestly some days you want to and some days you don't. And that’s honestly what makes it a better experience. Like, that's what's part of growth. It's knowing that your setbacks are part of, as much, part of your progression. Right?

Jillian Curwin: Right.

Gabriella Amaya: Like, you needed to have this give and go, and yeah. So I can say currently and confidently that I have such a better relationship with my scars on my stomach. And I think it happened a lot quicker because I was able to identify with that, like, what I just explained to you, and I was able to admit it to myself I don't like them. I think they're, I look like I have a second belly button. But did that mean I don't love my disability? I mean, there's parts of me that love and there's parts of me that don't. But does that mean I don't identify as a disabled person anymore? No. Does that mean that everything I've done and the positive work I've done should be taken and written away from me. No, no. It's still part of your identity. Disability is messy.

Jillian Curwin: Yes, it is so…It is so messy. So messy.

And you touched on something so, I want to get into in talking about the work you're doing.

Gabriella Amaya: Sure.

Jillian Curwin: What was your entry into advocacy?

Gabriella Amaya: Good question. So I would say it's my… I've…Around…I must have been an undergrad in college. Ummm, what was my entry? M’kay. I'll say it's twofold. Really when I started I would say I did a documentary on my disease way long ago. I was in, I might’ve been in high school still. My godfather was a, is a videographer. So, he documented and collaborated with people in Europe to kind of give a lot more information on Ollier’s. I'll say that's where it started, that I was like, okay, I want to talk about this. So I starred in a documentary film and it was Convalescence, The Journey Of Ollier’s.

But I'll say when I really started to, it really evolved in my advocacy work was when I volunteered at NYU's Initiative for Women with Disabilities, and I did a narrative-like storytellers program with them. And I think that was where Jillian, like, I realized too, like branching out into the community was such a really important aspect of advocacy, in sharing your narrative, knowing who really, to start sharing it with with each other was a really good starting point for me. And then from there evolving to Miss Amazing, I was director for that non-profit for New York. And then, and then I kind of decided that the advocacy work I wanted to do, I wanted to be a little bit more personal for me, and so I started the podcast and now have some fun collaborations coming up this year. Yeah. Some with, I'm going to be working and doing an open panel at Saint Francis College, to share what the podcast is with some young students. And then I'm also going to be doing a collaboration with Rick Guidotti, who runs Positive Exposure in New York City. So really excited. Really excited.

Jillian Curwin: That’s all so amazing. I'm so excited for you. I'm so proud of you.

Can you talk a little bit more, I'm curious just because like, Miss Amazing sounds like a pageant, and we don't see disability in pageantry really at all. So I'm curious, like, what was the spark that, you know, where did that idea come from? How did that come about?

Gabriella Amaya: So Miss Amazing New York actually is a, so it's a non-profit run by, I was actually asked to be the director. So, the founder of the non-profit reached out to me. And that's really how it came about. And I took the opportunity because obviously I thought it was a really great one. I was like, oh, I would love to work with more of my community and that experience, yeah, you don't see a lot of...In terms of Miss Amazing, that's why they, that's why they run…You really don't see a lot of people with disabilities in pageants. So in that realm, it gives them the platform to be visible in that space, but also obviously advocating for their voices, their narratives. A lot of women, you know, go through a lot of esteem issues with disability. So it's a really positive esteem experience for the disabled community.

And then for me, I've never really been a pageant girl, so my connection or my desire to do it was really more so linked to the community aspect of it. And I was able to appreciate how through pageantry you can, these girls really had a really fun time. They had a lot of fun. Also, pageantry’s stressful, too. It wasn't like a, I wouldn't say like a hardcore pageant thing, but it was a lot more about building community and building confidence and esteem and feeling beautiful and being on stage and being literally being seen like and doing and sharing your passion. So the girls that I did work with, it, that was a really nice, fulfilling experience.

And then for me, I think my niche is really narratives. So the work I wanted to continue to do was outside of that because I don't, I'm personally not so passionate about pageantry. I was never really a passion girl, a pageant girl, excuse me. So I'm really, really grateful for the experience of Miss Amazing, because it gave me that platform to be with the community and also in a leadership role like, that's where I reached out to Judy [Heumann], because I was like, we need to connect our girls to our history too. We did like, after the pageant, my, our, our division, the women that I worked with on our team, we wanted to have a leadership summit, but we wanted to do it with understanding where leaders started. Like, so we watched Crip Camp, we went into the history and we…building community doesn't happen in a day. So we, our team, took initiative to expand that community and that's where we met Judy, that's where Judy and I had more time to talk, and that's where I was like, okay, this was a really good give-go for me, like a good starting point. But I was like, the work I need to do after this has to be a little bit more specific to me. So that’s where I was honoring me. You know? Like, I need to honor the work that I want to do because it's a lot, it's a lot of your time, you know? And like I loved, I love doing it, but I was like, okay, pageantry is not my niche. It's, but it all really good, positive things to say about it, though. The experience as a whole.

Jillian Curwin: That's awesome. Like you said, like disability isn't seen in that, so to be able to, for you to be able to like, shine a light on it in a positive way is so important. The fact that it was just the entry point, you said, well, this isn't for me. I'm not going to you know, I'm going to...I'm going to use this though, use what I've learned and make these connections, build this community for me, and then grow my platform and grow my advocacy.

And I'm curious, because you said you did a lot of learning and have been, and as you've kind of come into your advocacy more and realized the direction you want to go in, has there been anything you learned that really, truly, shocked you along the way that you weren't expecting?

Gabriella Amaya: Shocked me about advocacy?

Jillian Curwin: About advocacy, about disability. However you want to interpret that.

Gabriella Amaya: Shocking. I wouldn't say shocking. I would say affirming. That's the word I would use. That...Umm, yeah. Affirming in that we need, we, being like, when you identify that you have a disability, I would say when you start doing more work advocacy in a more of, I guess, a leadership role, what is affirming is the power of community. And also the power of starting with you. That's where I said, you know, a lot of the work that I do has always been really like, I've always put, and I still do, I always put everyone before me. Everyone. I do. It’s so easy to act like I don't, but I do. It's making me laugh. But I realized that because again, to talk to what I say, like we, starting with you and your narrative is, is, is what you need to do. So I think, like I use, I took this, I'm very ambitious. I'm a very ambitious young woman. And I remember, like, I want to, you know, doing a, running a pageant, doing it for all the work and all these things. But I was like, oh god, there's so much more work that needs to be done, but it has to start here and then work from the inside out. So I was like, okay, instead of like, jumping to find big leadership roles and things like that, or not even find leadership roles, but instead of saying yes to them, let me say no. And let me go backtrack. Because Gab, there's things that you know, and that you need to talk, about and that you need to put you at the forefront. I needed to put my narrative at the forefront to be able to open the doorway for more, for more. So that, that was hard for me. That was hard for me. I don't really like putting myself at the front of things or like, it's hard for me to still even like, fully embrace like I, I can be an example or that I am.

And it's funny because obviously all the work I've been telling like, a younger me like, I don't want her to suffer. Like obviously, I mean, for example, or just leading by example. So I, taking ownership and owning that work can and needs to start with you is what I honestly affirmed for myself and affirming the power of community. Those two things I would say. It's actually kind of funny because I literally backtrack. I went, oh yeah, bigger leadership role. And now I'm like, nope, start a podcast, talk. Just you. And then open it up. And I, and I have been, you know, and it's brought me to really, really amazing people even like you. So, I mean, that's what I would say. I learned. Did that make sense?

Jillian Curwin: Yeah, it did. And it's so interesting because you like, you so often, it's like we're all trying to find these leadership roles and you know, for you to recognize that like that, you wanted to kind of take a step back in order for you to really come into your own. I think it's so important and I think that, again, you learn so much more from others and finding that community. And, you know, and now you’re like, you were saying that you were hinting at all the projects you have coming up. And, you know, if you stuck with more leadership type roles, would you be doing that?

Gabriella Amaya: No. Or would what I would be doing be honoring things that I know and like…?

Jillian Curwin: Yes.

Gabriella Amaya: Be honoring like the, like the work I know we're going to do. That's what's beautiful. It's like, if you can really identify as a leader within yourself, too, right? And, like, like owning, owning like, I do know. I do know, but I'm learning and. but like I, like I said, I'm very ambitious. So I was like, okay, great. Like I can, but I could work and do this and, you know, but I was like, I want to start somewhere else. And I'm so excited. I'm really excited. It's such a, it's very, it's critical to my life's work you know, like, even if it's something that I do and ten people know about it…

Jillian Curwin: Mmmhmm.

Gabriella Amaya: It is critical to my life's work that it happens. And I've only seen more positive things come from things like. And I literally, I'm learning how to appreciate the smaller, smaller moves, the smaller decisions and the, the smaller things. It's those small things that do really lead to big things, you know, and it's really, it's very meaningful. It's like, I feel like I'm doing work that feeds my soul. So, and I'm really grateful I can do that and I'm grateful that people actually work with me to want to do that. So yeah, it's taking a chance on yourself a little bit, you know, exploring.

Jillian Curwin: It's so important and it's so scary to do that. And you know, I love that you talk about like, the little things because I think we don't recognize that there are so many little steps that we have to take, so many little things that we can do to really make a difference for ourselves, to help us grow as advocates, as just people. But then those little things really do create a ripple effect. And it's not necessarily, we don't always have to be striving to make the big change right away. It's, you know, what can we, what little things can we do? Because those little things will sometimes, perhaps even make a bigger impact down the road.

Gabriella Amaya: Yeah. Um, even to, even say Judy telling me identify as a person with disability, also telling you that.

Jillian Curwin: Yes.

Gabriella Amaya: And we’re two people. Her, her little ripple like…

Jillian Curwin: Yupp.

Gabriella Amaya: Like, it’s just that little ripple. I think it was Oprah who said, “You never really know who your legacy…” you know Oprah. “You really never know your legacy, the lives you're going to touch.” Because like, you never know the impact that it has, but it really does trickle. It's a wave. It's a wave. It trickles. And that wave really did come full circle, I think, here, and that’s proof of that. It's proof of that.

Jillian Curwin: Thank you Judy.

Gabriella Amaya: Thanks, Judy. Holla at you. My literal girl crush. Ask my boyfriend. I'm like Judy Huemann though, so good. He knows, he knows not to get between me and my feelings about her.

Jillian Curwin: As long as he knows. And that's that's all that matters.

Gabriella Amaya: As long as he knows. He’s got to know.

Jillian Curwin: So speaking of Judy and like, badass women, badass people in the world, I want to know, though, who besides Judy, because I think we can't sing her praises enough, and we could continue singing her praises if that’s who you choose to answer, use as an answer. Who do you look up to?

Gabriella Amaya: Disabled person or anyone?

Jillian Curwin: However you choose to interpret that.

Gabriella Amaya: Oh, it's so funny. I mean, I think that's always evolving, too, and getting bigger. I think that gets a bigger like, I feel like…When I first was little, it was like Oprah was such a big inspiration for me, and my mom loved Oprah. We would watch Oprah all the time. Then like, coming into my own and being more…getting older like, Judy really was a really big one for me. and is. and it's not that anyone who I'm mentioning is no longer, they all are. That's what I’m trying to say.

I think currently my, right now, my current role model, or role model, or mentor is Elizabeth Jameson. Because I think what I've always tried to put into words my whole life…I did an interview with her, um, something I’ve tried to put into words my whole life. And what I echoed here, and that messiness, and the chaos of our relationship with our disabilities is being a beautiful thing is something that she was probably the first person for me to hear, how eloquent she put it into words and for me to feel that, oh, yes. That's it. Like, oh my god, that's it. That's what it was.

She is a disabled woman who lives with MS and is currently like, in the very late stages of her disease, and chronic illness is a whole other chapter of disability.

Jillian Curwin: Yeah.

Gabriella Amaya: And I would say she's probably my biggest role model right now because I love how, how much of herself she is in such a debilitating disease. She's written literature, articles on losing touch, finding intimacy. Right? Because with MS you lose physical, again, back to that physical aspect of disability.

Jillian Curwin: Yup.

Gabriella Amaya: But also. MS you cognitively go through different changes. You go through, um, episodes, like true episodes memory and she just is. Oh, you ever spoke to her? If you ever speak to her, you'll have to listen to our conversation. She did a critique, critique on my podcast. What an honor it was. This young, this woman was a lawyer, and then was an artist, and then had MS, and she took her brain images and re-imaged her brain because she couldn't look…When she first find out, when she first found out about her diagnosis, she remembers looking at the scans and not or not wanting to look at them for like, for…

Jillian Curwin: Yeah.

Gabriella Amaya: And then she took her brain, the images of her brain. and she painted and she did work on them as she was losing her abilities, right?

Jillian Curwin: Mmmhmm.

Gabriella Amaya: And she created this whole art gallery and her, and her brain is used to interpret that personal narrative experience of the patient experience and how complex, and how complex it is. And some of her images, like she says, she catches her, her brain dancing like, and she says this one is like the humor in it. Like, she just she says, like, again, the fuck yous, like you said, if you could, if you could have just been mad at your disability, you know? She talks about, she published in The Washington Post, she was like the beauty, like the healing of swearing. Like, how just so many yeses. It’s so amazing. Like, what she is encompassing right now in these late stages of her disability, I think is critical to understanding who we are in our disability. So, I would say and echo her teachings are through me. So I’d say she is my mentor and my, my inspiration right now for sure.

Jillian Curwin: I love that. I'm going to try to…Was she on the podcast? Or where did you have this conversation? Cause I would love to link to it in the show notes

Gabriella Amaya: She has, yeah, a link. So she has a website. Oh, also I'm sorry, are you talking about our episode?

Jillian Curwin: Yeah. The one that you used the, the conversation you had with her.

Gabriella Amaya: That conversation, I'll give you the link. We haven't published it yet. It’s going to be coming out, so when it is, I will give it to you and you can link it. Outside of that, if people want to know about her, she has a website, http://www.jamesonfineart.com, and she also has MS Confidential on YouTube. So where she basically just unpacks like the beauty and messiness of living with chronic illness. Yeah.

Jillian Curwin: I love that. I'm going to include her links as well because I think she's just a badass woman. And we support badass women, and men, but badass women on this show.

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

Gabriella Amaya: Um, any questions? No. I do want to start my intro again, though. I want to have a second chance. Because I think like, my introduction of me introducing who I am, a little bit more. But outside of that…Umm no, I think I'm good. I think I'm okay.

Jillian Curwin: Okay. Yeah. No is a totally acceptable answer to that question. Everyone always looks at me like they expect something. I’m like no. You can say no.

I could talk to you for hours but, so that just means that really I just have to have you back on. That's what it really means.

Gabriella Amaya: Oh my god, I would be so honored. I would be so honored. I think, you know, when I, when you messaged me and like you, I mean, I do my research on everybody. So I researched you, your blog, how you started, I know you more than I knew you when you first reached out. Obviously, you know, I love getting to know people. And I was, I thought it was honestly, is also very affirming. I just want to say thank you for asking me and reaching out.

Jillian Curwin: Of course.

Gabriella Amaya: And knowing and listening to who you've also, who you've, who you've interviewed, but also your perspective on being a little person. Like, I remember my mom watching the shows like Little People [Big World] and like, I was always, we would watch those shows and like, I, I'm really, I feel really grateful that, that I can know you and I can also learn more about your experience. That, that's really, that's so fulfilling and full circle for me. So thank you for reaching out.

Jillian Curwin: Thank you. And thank you for coming on and, you know, trusting me to make sure that your story is heard in a way that authentically represents who you are for. You know, saying yes to coming on. I always say with my guests like, this is their space, I'm just hosting it. But it's really a place for them to tell their story, to have their voices be heard, because so often disabled voices aren't. So thank you for trusting me, trusting this platform that I'm building, with your story. It means the world. It really does. With every guest. It means the world.

Gabriella Amaya: Oh my god. You're doing such good work.

Jillian Curwin: Thank you.

Now I will give you the opportunity to fully plug yourself, tell people where to follow you, where to see what you're up to next, you know, because people should be if they're not already.

Gabriella Amaya: Okay, the plug. All right. So please do if you'd like to listen to the podcast and it's the @redefinepod on Instagram, you can hit our Linktree there and get access to all of our episodes on Spotify, Apple, everywhere. Any platform. It's pretty much everywhere. And then we do have a web page, theredefinepodcast.com, but it is also kind of being revamped for this year. So obviously that's changing it up. And you can follow me on Instagram if you lik, @gabriellamaya. That's two “L”s. G-A-B-R-I-E-L-L-A-M-A-Y-A. I don't put two A's, I just kind of merge the last A in the first name and the first A in the last name.

Jillian Curwin: Love it.

Gabriella Amaya: Um, and yeah, you can just reach me through the socials and I'm happy to reach out. And thank you so much for, for even, like learning more, learning more about me, learning more about the podcast and the girls and the people that I have spoken to as well. So thank you.

Jillian Curwin: You're welcome. And thank you again so much for coming on. I could talk to you for hours, which means you just have to come back.

Final, final thing I do is kind of like an icebreaker, but I put it at the end because I think it's more fun that way. And it's my podcast…

Gabriella Amaya: Absolutely. Do you.

Jillian Curwin: I can.

So, just to get to know a little bit more about you I have five categories and I want to hear your favorite in each one.

Gabriella Amaya: Okay. Oh, gosh. Okay.

Jillian Curwin: First is favorite book.

Gabriella Amaya: Okay. Uhh gimme a second. So hard. Oh, so, so my, my boyfriend would literally be mad at me for saying this, but Tuesdays with Morrie because I love sad books by like, I love deep books, and Tuesdays with Morrie is a deep, sad, meaningful book.

Jillian Curwin: Okay. I haven't read that, but I'm adding that to my list of books to read this year.

Gabriella Amaya: Okay.

Jillian Curwin: And then I will probably call you crying about it later.

Gabriella Amaya: You'll love it. You’ll love it.

Jillian Curwin: Favorite TV show.

Gabriella Amaya: Right now, Ginny & Georgia.

Jillian Curwin: Okay, I haven't seen it, but I've seen clips. And now I feel like I need to watch it.

Gabriella Amaya: You gotta. It’s toxic. I love it.

Jillian Curwin: I'm on it. I'm on it. Favorite drink.

Gabriella Amaya: Ooh. That depends on my mood. But as of lately… Oh, god. Well…sometimes, as of lately, I’ll just, like a mezcal marg. I like that little mezcal. It‘s new for me. It’s different. Um, but I'm also an espresso martini girl. Ummm. And sometimes a French 75. But, I mix it up. But we’ll say mezcal marg for the season right now. Just for me. It’s my season right now.

Jillian Curwin: Okay, perfect. Favorite piece of advice you've ever given.

Gabriella Amaya: Damn, Jilly. Damn. Jillian.

Jillian Curwin: I'm sorry. People say these are the hardest questions I ask.

Gabriella Amaya: That was a hard…. Advice….Hmmm. Start with you and believe in that. I definitely that, I wanna empower the young, younger, younger me's, younger teens to do that. Start with you. You can do it.

Jillian Curwin: Love that. And the last one favorite piece of advice you've ever received.

Gabriella Amaya: Identify with your disability.

Jillian Curwin: Yes. Perfect note to end on. I think that's perfect. Again, thank you so much for going on. Go follow her. If you aren’t already. Go listen to her podcast. It's fantastic. I'm going through all the episodes right now and stay tuned for everything, all the amazing work Gabriella has in store. I, for one, can't wait.

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

Gabriella Amaya: All right, listen, everybody. Height is just a number. It is not a limit. All right. Snap to that.

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 at @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.