Jillian IlanaMay 16, 2023Comment

Dr. Rose Perry On Who Should Teach About Disability

Jillian IlanaMay 16, 2023Comment

Image Description:
Dr. Rose Perry, a woman with blonde hair pulled back with bangs and tendrils framing her face wearing brown glasses, gold hoop earrings, a gold necklace, and green sweater, looking straight to camera. Behind her are plants. Overlaid is the text “Always Looking Up. Episode 99 -> Dr. Rose Perry, Who Should Teach About Disability

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 Dr. Rose Perry. Rose, a self-described sociologist, turned social innovator is an applied research scientist with a Ph.D. in neuroscience and physiology. She's the founder and executive director of Social Creatures, a nonprofit social innovation and research organization on a mission to ensure that any individual can socially connect with others, and co-founder of Historicons, a toys and games company that celebrates diversity by using historical events and icons to represent, educate and empower kids. We discuss how being disabled has influenced her work, who should bear the responsibility of teaching kids at an early age about how to interact with someone who is different, and the social connections and relationships between non-disabled and disabled people and those within the disability community itself. Let's get into it.

Hi, Rose.

Dr. Rose Perry: Hello. Thanks for having me. How are you?

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

Dr. Rose Perry: I'm doing great.

Jillian Curwin: Thank you so much for coming on. I am so looking forward to talking with you. I think we just talked right before and I know, like, trying to remember like how, how I found you like, you came across my social media, or someone had said it in passing and learning about who you are I was like, I need to get this girl on the podcast. I need to talk with her. I need to know her story. So I'm really excited to be having you on Always Looking Up.

Dr. Rose Perry: Well, thank you. That's really nice of you. And I'm excited to be here.

Jillian Curwin: Yay! To start, why don't you tell my listeners a little bit about yourself?

Dr. Rose Perry: Sure. So, I'm Dr. Rose Perry. I'm a 35 year old white disabled woman living in Brooklyn, New York, with my husband David and my dog, Brasky. And I was born with Russell Silver dwarfism. I grew up in central Pennsylvania before I moved to Delaware, where I studied at the University of Delaware. I majored in neuroscience while I was a student there, and I then went on to get my Ph.D. in neuroscience and physiology from New York University School of Medicine. And after that I did a four year postdoctoral fellowship, also at New York University, with Doctors Clancy, Blair and Sybil Raver. So I did a lot of academic research in laboratories, and my research across my academic career explored how relationships and social context get under the skin, so to speak, to influence our health and development across the lifespan.

But then, at the beginning of the pandemic, I made a career shift and I founded and I'm the executive director of a nonprofit research and social innovation organization, which is called Social Creatures. And our mission there is to ensure that any individual can socially connect with others, no matter the circumstances. And I'm sure that we'll probably talk more about Social Creatures later on in today's discussion. But finally, I'm also the co-founder of an educational toys and games company called Historicons. And our aim with Historicons is to use play to educate children and their families about underrepresented history, including Black history, LGBTQ+ history, disability history and more. And the goal really is to spark dialogue, pride and allyship around diverse identities.

Jillian Curwin: All of that is amazing. All of that we will be getting to very soon. But before we do, I want to ask a question, well I have two questions, and it's the questions I ask all my guests. The first is, how do you, how do you define being a person with dwarfism?

Dr. Rose Perry: Yeah. So I have Russell Silver dwarfism, which is a less common form of dwarfism. It's basically, I'm just very, very petite. So I'm about four foot eight inches. It's, it's different than other types of dwarfism in that I'm proportionately small, so the length of my limbs are proportionate to the length of my trunk, but I have to wear kids clothes. I wear a kid shoes, which makes finding shoes very interesting. And yeah, I mean, in general, that's what it is. But it also…I don't know. How else do I, do I define it? It's just, it's part of my identity. It's a major part of who I am. There's lots of things about it that I like. And in general, I identify a little bit more with the social model of disability. So the, the struggles that I face related to my dwarfism have a lot more to do with society and things not being accessible or designed for me than anything else. Otherwise, most days I'm doing pretty well and very happy with with being a little person.

Jillian Curwin: That’s awesome. And you have a form of dwarfism that I didn't know much about. I think it's a name that, like, I've, or it's a type that I've heard talked about at little people gatherings, at LPA, but I didn't know much of it. And I can say that you are like the first person with that type of dwarfism that I've met and talked to. And, you know, you bring up the different like, it's so interesting because like, my type of dwarfism is disproportionate but…meaning like, I have shorter arms, legs, average height, torso, but our struggles in terms of like, trying to find clothing is very similar.

Dr. Rose Perry: Yep. So I can relate on that for sure. Yeah. And the one side of my body is smaller than the other. So there's other things that come with that too. So I have to wear a different size shoe on one foot versus the other, or just kind of make do with one shoe not really fitting ideally. So I can…

Jillian Curwin: Right.

Dr. Rose Perry: Relate on all of that.

Jillian Curwin: We can have a whole separate conversation about just trying to find clothes as a little person. So if you want to come back on to have that one, the invitations open.

Now I want to like, follow up then and, you kind of touch on it a little bit because I feel like there's definitely a difference for us, or at least for me. And I don't know if this is for you with like, defining how I, how I'm a little person versus how I am as a disabled person. So I want to know, like, how you define, then, being disabled.

Dr. Rose Perry: Yeah, that's a great question. So being a little person versus being disabled again it, for me, a lot of it comes down to the social model of disability. So just the barriers that society create for us, or not necessarily create intentionally, but we're not considered in how the world or spaces and places and, and things are designed. And then, beyond that, I also do have some health related things that come with my form of dwarfism. I think the things that make me feel the most disabled, if you go off of like, the functional limitation definition of disability is chronic pain, and then also periods of extreme fatigue and brain fog and things that just sometimes makes it more difficult to even do my job. So there's certainly days where I do relate to the medical model of disability as well because of those things.

Jillian Curwin: I get that. And it's, it's so true. Like we…I think there's definitely a push in the community to kind of have society adopt the more social model of disability, because so much of what is disabling for us is not necessarily our bodies, but it's the environment that is created around us and that, as people with dwarfism, it's really not accessible for us. And, our accessibility needs are often not truly considered when designing a space to be, quote unquote accessible. But at the same time, it's like, recognizing that being a person with dwarfism doesn't mean just being short. That there are medical, there is like that medical component that is there and that there are other symptoms and conditions that come with being a person with dwarfism, no matter what type of dwarfism you have.

Dr. Rose Perry: Absolutely. I totally, that resonates a lot. And Russell Silver is not very well known so it's incredibly rare. Throughout my life that I've gone to any doctors and that they've, they've heard of it before I even get there or like they look at my medical chart right before I come and they're like, “Oh, I never heard of this. I tried to quickly research it.” So there's also, at least for me, a whole other element of I do have medical needs and things that are, are tied to my dwarfism, but then it's really hard to get good health care around that. And we're also a very understudied form of dwarfism. So, you know, I'm a researcher, so I oftentimes feel like I need to take things into my own hands and I'll PubMed and look for articles and there's increasingly more, there's certainly a lot more research than when I was a kid, but it does really center on childhood and there's very little on Russell Silver in adulthood and even less so when we look at some of the psychosocial health related things, which my work today focuses on more. So yeah.

It's just tricky because there's a whole medical component to it. And then when you have a rare condition, a lot of times there's not a whole lot of help around that. But all that being said, very happy to be living in New York City. I didn't always live in New York City. And one of the…I think there's only two or three doctors in the world that really specialize in Russell Silver and one of them is here. So I'm now able to see her for health care, and that helps quite a bit. Doctor Madeline Harbison, she's amazing, but I have to go to a pediatrician's office to see her. So every six months I go for my PCP appointment and I'm sitting there with a bunch of really cute kids, but there's always confusion from the nursing staff or support staff of like, who's the appointment for? Where’s your child? And I'm like, No, no, it's me. This is where I come for my doctor's appointments.

Jillian Curwin: That's so true because like, you know…I know, when my mom was telling me and I want to ask, go back to kind of the lack of information and to get your, your perspective as to why that is. But again like, real quick, just like touching on the fact that you talk about like, where you are like, having that access to a doctor that specializes in you know, your form of dwarfism, I grew up in South Jersey. Like, that's where I was born. Like, happened to like, we were lucky that the doctor…I lived was…that I went to who focused on dwarfism was an hour away because my mom was saying when she like when she was pregnant with my younger brother if they wanted to know like, what could happen because she's like, I need to know where to go. And it seriously came up with lik, if my brother had something that he had to deal with and that doctor was across the country, what do you do? Like, do we split up the family to make sure that Jillian can see who she needs? Because there are, again, only so many doctors who truly understand and specialize in, whether it's more like the broad of achondroplasia, or very specific types of dwarfism, and it's something, you know, like, having that access to those doctors is so key. And my doctors at a pediatric hospital, I can go till I'm 35. It's going to be really weird, but I'm also like, I don't want to leave. I like, I trust these people.

Dr. Rose Perry: Yeah, no, I identify with that a lot. I grew up in a more rural part of central Pennsylvania and I mean, I was, I guess we were, my family was lucky that they were able to even figure out what was going on with me. Like, I got my diagnosis…Well, at least my parents got my diagnosis when I was 18 months old, which still is a little bit long. You know, I was really small in utero and I was born 4 pounds 13 ounces and wasn't really putting weight on or growing much after that. And it wasn't until I was 18 months old till a doctor in the area was able to figure out what it was. Yeah and, you know, we didn't travel for specialized care, so I just kind of was up to what central Pennsylvania doctors knew, which wasn't really anything. So it was, it was a huge moment for me to see a doctor that was like “I understand what you have” and to be in the waiting room and see other people that had Russell Silver and other forms of dwarfism. It just, it really, it made me realize how disconnected I was from that my entire childhood. And yeah, looking back, although my family was doing what they thought was best for sure, I do wish that I had that even more than the care. I wish I had the connection to the community much sooner.

And one thing that I love about Doctor Harbison is after my first appointment with her, and I was 24 years old when I had my first appointment with the doctor that knew anything about Russell Silver, she immediately connected me with another one of her patients who just happened to be in New York receiving care at the same time, we were the same age. She was like, you need to meet her. You need to know somebody else around your age that has Russell Silver. And I just so appreciate that a medical doctor was, was even thinking about that as well and making those connections for me because, I mean, I've never had that happen in any other health care situation.

Jillian Curwin: Yeah, you, you touch on that connectiveness because so often, and I think this is a great pivot to kind of discussing the work that you're doing, you know, so often we find ourselves in situations where we're the only little person in the room. Sometimes we're the first little person in the room, and it can be both very alone and very lonely. And I feel like those are two different feelings. And, you know, that's not, that lack of connection, I think, is something that for us, and it’s interesting because I sometimes feel it more when I'm around, or now that like, with moving to New York, like other disabled people, and that they have this like, connectedness. But our community is still so separate.

Dr. Rose Perry: Yeah, it is. I feel the same way all the time. I don't think I've been in very many work spaces until I shifted my career and much more intentionally tried to get into the disability space and work in that regard. But before that I was pretty much the only little person in any of the workplaces I was at. I will say moving out of a very, a more rural town and moving into new York City was great. Just seeing other, in general, short people, I was like, oh my gosh, it's not just me. And that was, I just didn't even think about it. And it was just, mentally, such a positive experience, just even being in a more diverse community. So love living in New York for that reason. But, but still can be surrounded by so many people…

Jillian Curwin: Right.

Dr. Rose Perry: And still feel lonely, like you said. And I definitely have experienced that many times in my life.

Jillian Curwin: It's, it's…we're going to get into it, but talking about your work and what, I guess, that did play into what you decided to do. You describe yourself as a social neurologist turned social innovator. What does that mean?

Dr. Rose Perry: Yeah. So I'm a social neuroscientist by training. So basically I studied when I was in my traditional academic research career how the brain and our nervous system and physiological systems are are actually influenced by interpersonal relationships, which back in 2007 when I started studying this, was a much more, you know, not a lot of people were talking about that, just the thought that things like your immune system can be directly influenced by if you're lonely or by the quality of relationships in your life. So luckily the field has built up quite a bit since then, and I think the pandemic has also helped quite a bit as we universally have experienced social distancing and loneliness because of that.

But yeah, so for a long time I was just in the lab studying these things and it was really just discovery focused, generating new knowledge. And I loved that. But I, over time, grew, quite honestly, I grew frustrated because I didn't feel that the knowledge was necessarily being translated outside of the walls of the laboratory, or at least not as quickly as I thought it could be. The academic system is very siloed as well. So there would be like, psychologists studying health psychology, which get at a lot of these things in terms of how your relationships and, and partnerships influence your health. But then, also population health is a distinct field. Studying this and then I was more in the behavioral neuroscience field studying this. I did a lot, in my early days of research, on early childhood research and how parent infant attachment and relationships really shape the brain in early life, and how that can have long term influences over the brain and physiology.

But anyway, that just wasn't people weren't working together, right? So there's all these people in different silos and different fields and they weren't coming together to necessarily discuss their findings and then ask, okay, so what, what are we doing with this? And research is largely taxpayer funded, which I don't know how much the general public even realizes that that your taxes go toward funding researchers like myself and my colleagues through major federal grants and I just, like, well, they're funding it. What are they getting out of it? Right?

Jillian Curwin: Right.

Dr. Rose Perry: I shifted, or I grew, that frustration grew to the desire to shift not just from discovery based research, but more into applying the research and being very solutions oriented or application oriented. So that's what we're really trying to do with Social Creatures, is a, build bridges between all of the silos of people researching social relational health questions, but also build bridges with policymakers, build bridges with community members, with lived experience. Because I could have, we could have a whole podcast episode on that and how research generally, it's moving in a better direction these days. But in general, the research questions that are being asked, how problems are being defined, that's all being done very divorced from the populations that the research is intended to serve. So when you read papers, it's often evident you can kind of, especially if you use disability as an example. Whenever you read about disability and loneliness or social isolation, a lot of times it's written or implies that it's because the person with the disability or the chronic illness can't get out of the house and they can't do these things. And it's all kind of the locus of responsibility is on them. Instead of talking about, oh, well, what about when people invite you to something, you're too sick to go and then they just stop inviting you because they're like, oh, Rose is just not up to do these things. And they're not, they're not going to come up with the solution that works for me in that moment and for other people with disability. So, I digress a bit.

Anyway, Social Creatures, that's really what we're trying to do is a shift from just discovery oriented research, but to applying the research and solutions, solutions oriented work. But B, the research that we are doing in conjunction with, that we're very, very thoughtful about making sure that what we're researching and, and how we're designing our social connection programs and social health programs, because that's one thing that we do is directly, with the community members, with lived experience, because that's just not happening, happening as much as it should within the traditional academic system and within policymaking bodies and applied work in general.

Jillian Curwin: Everything you said I want to, I have, like, a gazillion follow up questions. But I want to start with kinda focusing on, I think, one of the main points you said is that so much of the research, and I'll say like, even going back to like, the medical research and how there are so many, there's not many doctors who are researching even the more common, and as well as the less common, more specific, more rare types of dwarfism, that there are only so many places we can go to get answers. And often those answers are coming from people who don't have the dwarfism. My doctor's not a little person. I, he’s an expert, but there's still that lack of understanding the lived experience, you know? But so often we say in the disability community, nothing about us without us, because so often society tries to tell us what it's like to be disabled or what, how we should live our disabled lives and that includes from a social perspective, even within our own community. I've seen it within the little person community. I've seen events being held at places that aren't accessible, and no one thinks about that until it's too late and someone can't go, no longer can go because they truly, they can't get through the door. And the solution is, well, we'll see you at the next one. And that's not the solution.

But I guess, like, you know, I don't like…and it's, it's frustrating because it's like we're, we're the experts as to what it's like to live in our own bodies. We want to be included in these conversations. we all want to be able to enter and access a space and feel that, you know, that connection. But also that belonging, that, you know, that we feel that we belong, but that other people understand and respect that we belong and that we are allowed to take up space, be part of the conversation, and engage with the people and the environment.

Dr. Rose Perry: Yeah, absolutely. It's, I mean, so much of what you just said has my head spinning and it's making me think back to times, especially when I was working in my academic career, going to conferences and giving big presentations to giant groups of, of people that were, you know, in the academic world, you need mentors and then you need a lot of supporters if you ever want to get tenure and become full professor. So it just automatically was a space with power dynamics that any younger scientist is very gently navigating or very strategically navigating. And then I would have my talk, right? Give my talk, and the podium would be way too tall for me. So you couldn't see my head over the podium. So then, and then the mic would be like, attached to the podium. And I couldn't just easily pick it up and step around it. So, and it’s definitely gotten better. Then again, some of this was over a decade ago, but I never received anything when I was registering about, “Do you need accommodations? Is there anything that we can do?” I was never given opportunities to kind of scope out where my presentation was going to be ahead of time so that if there was a stool, or a platform, or a solution that could be made so I gave many a very awkward, long presentations where the crowd could see basically my eyes if if that and otherwise. It's more just like they're listening to what I'm saying and seeing the slides behind me. But yeah, Zoom has been really nice for that and not having to worry about that with Zoom and video conferencing in the pandemic, just that in general has been really great, at least for me. I'd love to hear your thoughts on that too. In terms of just navigating workspaces obviously not all digital spaces are accessible, but I think that things like video conferencing really level the playing field in many ways. So I'm happy to not stress as much about the physical environment for all of my talks these days.

Jillian Curwin: Right. I like, and like, what you said, the fact that like, you were giving talks and nobody could see your face like that….you like… that…No one could see you like, that should sound surprising to people, and I'm sure it does. But if someone is a little person, is a disabled person, like, it's not surprising. I'm not surprised that a lot of these spaces are inaccessible and that they didn't have a solution to make it accessible and…But like, but we're supposed to be okay with that. Like that’s, that, like, we as the disabled person are supposed to be okay with not being seen.

Dr. Rose Perry: Yeah. Yeah, it's a, it's a sad reality. And then it also because honest, I mean, I really can't think of a conference where this happened, where I at least saw another little person there. So I was the only one there. And these were large conferences. Some of them were international big conferences. And then just even the way that people reacted to it too like, people don't know how to act. And then that just like, adds a whole other level like they, they don't know how to act around people with dwarfism. And it's that, it's almost getting into like, microaggression territory, but also like, outside of that, just not knowing how to act. And then that just makes it harder to navigate things as well, at least in my experience, and having to expend a whole lot of energy making people feel comfortable about my own disability to be able to even begin to engage in a productive work conversation or to prove my worth there.

So yeah, I think there's a lot of nuance to it when the majority of a population doesn't have much experience interacting with someone with dwarfism or with a physical disability in general.

Jillian Curwin: Why do you think there is such this, such…? Because I agree. And I could go on and on about the microaggressions and the, like…It’s 100% true that walk into a space and people don't know how to react or how to even understand what they're seeing, when they're seeing a little…, or who they're seeing, when they're seeing a little person. And like, why do you think, as someone who studies social interactions, why do you think that there still is this complete…I won’t say complete, but like this definite lack of understanding of how to behave? I guess.

Dr. Rose Perry: Yeah, I think there's a lot going on still. I think we've made work…There's progress that's been made and I recognize that and I'm very thankful for all of the disability activists that have come before us and are actively working to help make that progress. But disability visibility still has a long way to go in mainstream media in general. I think the built environment remains pretty inaccessible in many ways and then that automatically leads to less social integration as well. I think there's just still outright ableism and discrimination that affects things and I think that we, as a societ, put a lot of responsibility on the individuals with disabilities, and their families with disabilities, around helping other people feel comfortable or like creating those boundaries. And I wish that society put more effort on teaching like, their kids from an early age, how to appropriately interact with someone that's different from that. So like, I think the spaces are still not integrated enough to begin with. But then like, we're asked to do a lot of the work to make others feel at ease, or comfortable, or to, to have to speak up and say like, oh, like, you know, this could offend someone if you say this or if you do this instead of even, you know, parents putting much effort into their kids being A, exposed to diverse environments, and B, understand the lived experience, and C, learn how to be an ally to people who don't look like them. So I think, I think we have a lot of work to do. And I think, if I could pick one thing I'm always biased of, like, how can we start earlier in life? Because I think it's easier when, when it's early age kids are familiar and they know and they, they, they grow up in a diverse environment. They're not going to stare because they've seen little people for, since they were a baby. Right?

Jillian Curwin: Right.

Dr. Rose Perry: The parents just put in the work, and they did the work themselves, so they could raise their kids to, to have to see that this is just a very normal part of humanity, that there's a lot of natural variation in how people look and who people are and just embracing that. Yeah. So, I don't know. That's a lot of things I just said.

Jillian Curwin: It's, I mean, it's so true and it's like I, I struggle with this because it's like, it shouldn't be our responsibility every day to have to kind of educate and to, you know, hope that people understand, you know, like, to educate people as to how to treat me, and others who look like me, like a person. Because, again, it sounds so simple what we're asking people to do, and yet it doesn't happen. And, you know, I think it does have to start earlier because, like, you know, kids point and stare and how that parent reacts when that happens, you know, that's how the kid is going to then know…they're going to go off their parents. And that's going to be how they react whenever they see a little person, not just that one time. And it's exhausting to have to kind of be that educator, you know, as I'm trying to, like, live a normal life, but at the same time like, not doing it doesn't feel like an option either.

Dr. Rose Perry: Right. I guess I just am seeking more balance. I'm happy to continue, in some regards, educating and doing what needs to be done, but I just wish that there was a little more balance with non-disabled people making an effort as well. And even like, close friends of mine who have kids, which is great because they'll like, talk to me and come and ask questions about things and like, there's a lot of parents that are very “Hi, well, about this, right?” Um, but I've had people be like, “Oh yeah, my, my four year old daughter and my three year old daughter saw a blind person today and was really staring at them a lot, or saw a wheelchair user and was really staring at them a lot, and they'd never seen one.” So this is a really normal reaction. They’d never seen somebody who was in a wheelchair user. And I'm like, okay, yeah, sure, that's normal if they've never seen someone who is a wheelchair user, but let's dig into that. Let's dig into why your four year old child has never been in a social setting before with someone who's a wheelchair user, or with a blind person, and not, let's not like…shift it to like, sure the kid’s reaction is normal. Let's shift it to like, what has happened in the first four years of that kid's life that this is the first time they're exposed to that? So that's, I think, we need to be having that conversation a little bit more. And I think that's where a lot of really foundational work can occur that is not necessarily occurring, at least at scale quite yet.

Jillian Curwin: Right. And that is so…I didn't even think of that because it's like, I'm again like, so used to like, understanding, and this probably comes from the fact that I'm often again the first or only little person in the room and understanding that I could be…I’m my employers first little person that they've met. I was my parents first little person that they've had, that they really, truly got to, get to, had to get to know so I, and so there is that understanding. But it's like, yeah, why, why are we waiting for that first interaction for that child or that adult to finally start asking questions? For them, to start learning where you don't need to have a person be kind of like a live exhibit for them to get that education?

Dr. Rose Perry: Yeah. And like that's what's great about modern times is there is more than ever…I mean, there still is a long way to go, but there are books about disability, there are TV shows with increasing disability representation, there are toys, there are dolls. Like, there's so many ways for parents to be having these conversations and making it a normal part of their kids’ immediate…without there being, like you said, an initial live exhibit. And yeah, I just think we need more of that because kids are really smart and really like, they, they won't, if it's not this like, anomaly all of a sudden, they're not going to have that reaction.

Jillian Curwin: Right. You touched on something, and I want to circle back to it in a little bit, about kind of like, the representation and creating tools and creating ways, more visual ways for children to understand, which is something that I know you're doing and are started doing with Historicons, but I want to I want to I had a question. I can't remember where it came from. Within our conversation, we talked a lot about like, the social connections in those relationships, the interactions between non-disabled people and disabled people like that, kind of like those interactions. And I want to kind of talk about, ask if they've done research about, like, the connections within the disability community itself, because our community is incredibly diverse. I mean, can even break it down to like, the dwarfism community, which… that's a whole…That, I feel like, could be a whole separate thing, but kind of like, then taking it to the next level like, well, what's it like within our community.

Dr. Rose Perry: Yeah. No, I think when you look, I don't know the full research literature, so I'll definitely preface with that. But what I do see time and time again, and not just with the disability community but in general, a lot of times when you look at cross identity relationships, that's when you see things that can be strained because of microaggressions, because of discrimination, because of just accessibility differences in general, but what's always comforting, at least to me, is then when you look within the actual community, how strong the ties typically are and how protective those ties are to our health and well-being. And I think the disability community is, for the most part, a really solid example of that. Of course, there's still sometimes a lack of unity on certain things. I know a lot of disability rights activists that I talk about or that I respect, talk about the crab pot problem. And that can be, that could be a whole other conversation.

Jillian Curwin: The what problem?

Dr. Rose Perry: The crab pot problem.

Jillian Curwin: What is that? We don’t have to do…I’ve just, I've never heard that.

Dr. Rose Perry: Yeah. So, I'm not going to do a great job explaining it but it's basically like, I think it has something to do with like, crabs trying to crawl out of the pot and one of them pulls the other one down. So it really speaks to the diversity within the disability, disability community itself still, and how it's hard to, it's sometimes hard for one sector of the community to, to be happy with there being progress with the other sector if it doesn't also affect them. So it's just, it's just a…I'm doing a terrible job describing it to the listeners. Please look at the crab pot problem. Steve Spohn talks about it. He's amazing. And it makes things, it does make things hard sometimes. But I think in general, when you look back, even historically, the disability community has done a really good job of leveraging their friendships, their relationships, to literally bring about civil rights progress for our community. I mean, I think, Judy Heumann has a quote that’s something like “When other people see you as a third class citizen, the first thing you need is a belief in yourself and the knowledge that you have rights. And the next thing you need is a group of friends to fight back with.” And when you look at things like the 504 Sit-In, which led to the first legally enforceable civil rights protection for people with disabilities, it really was a group of friends really that organized that and started it, and, and built a whole movement. So yeah, I think that the social ties within the community are really beneficial. That being said, you and I have both talked about today too, how often we're the only disabled person in the roomm or the only disabled person that we've known in certain parts of our lives. And it, I think we have to put a lot of intentionality and seek out those connections as well, which makes things difficult sometimes.

Jillian Curwin: Yeah, absolutely. And I think that you touched on Judy and I had a question about something that I saw with you and her. Yeah. And like, now I need to talk about the crab like, it does make sense. I do think that that definitely happens in our community where one section, one type of disability starts advocating and starts making progress. Then you kind of… do you see that like, other communities, like, well, wait, what about me? What about me? And that it slows things down and that’s, it happens and it's like, and I, it's, it's frustrating. And, but then at the same time, like coming into the community and like, I really, truly didn't identify as disabled until moving to New York and finding other friends with different disabilities, not with dwarfism, and like, seeing that, you know, on social media and in person like that, just natural instinct to kind of boost each other up and protect each other and to celebrate each other's successes. Like, that's like, I wish that that could happen on a large like, that needs to be what continues to happen on a larger scale. And I think we did see it in at the Sit… at the 504 Sit-Ins, and we saw it in the nineties with the Capitol Crawl and the push to get the ADA passed. where you have groups of differently disabled individuals coming together and saying, this is what we need as a community. Yes, our needs are, our specific needs for our disability are different. But if we only focus on that and trying to get what we need for our disability, then the community itself doesn't, nothing changes for us. Like, it's like that. And that's like, adopting that nothing about us without us within our own community as well in order for society to get to, you know, listen.

Dr. Rose Perry: Yeah. And you essentially just explained the crab pot problem better than me. It is exactly that, right?

Jillian Curwin: It means that you explained it very, like, as soon as you, I was like, oh, okay. I see. I just had never heard that term as…I’m gonna do some more research on that though.

You’ve brought up Judy who we love. We love Judy. We miss Judy.

Dr. Rose Perry: I love her.

Jillian Curwin: She's a queen and part of like, looking into your like, who you were before having you come on, I saw an article where you talk about a conversation you had with Judy and you talk about disability disclosure. Can you kind of talk more about that?

Dr. Rose Perry: Yeah. So I was very lucky to have met Judy on a few different occasions before her passing, and one of those occasions actually ended up being eight days before she passed away. And I'm so grateful that I had that specific conversation because that one was the only time that I was able to have a more intimate conversation with her and go a little bit deeper about my story and my disability. And in that conversation I told her about how learning about her story through watching the Netflix documentary Crip Camp, but then also through working on the 504 Sit-In puzzle for Historicons and the research that I did around that, that was really honestly the first thing that made me feel pride in my disability identity. Growing up, my disability was not something that was openly discussed with me. I mean, obviously I had the lived experience of it, but it wasn't something that was talked about. I myself didn't even find out the details of my diagnosis until I was 17 years old. So I just had a lot of processing identity wise to do in young adulthood and coming across Judy's work was a turning point for me. And that, and just made me realize, I mean, whenever you, whenever things about your identity aren't discussed with you and, especially around disability, I think it…What happened to me was I had some internalized shame about it and seeing the 504 Sit-In and seeing Judy's life work is just a giant flag of disability pride, right? And seeing how powerful pride is. So I shared all of that with her and just was very, very grateful.

But then, within the same vein, I was like, look, I didn't even really understand my diagnosis, or begin to identify as disabled until my twenties just because of my, my life history. And yeah, I just have always struggled with like, do I tell people, how do you disclose it? Do I…? Is it like with pronouns when I can like, put it in parentheses after my name? Is there like, a way that I can like, put it in an email signature? Like, I want to be living authentically. Like, it's important for me now to identify, but I also don't really know how to and it just, I don't know how to feel about it. And then on top of that, too, we touched on this a little bit earlier, but in the shift to working mostly remotely during the pandemic, there was a whole other experience going on where my dwarfism was not as immediately apparent or visible when you're just seeing like, my shoulders and my head. So I became very aware that I was meeting a lot of new people, because my job shifted during the pandemic too, that had no idea that I am a little person and it just started feeling like, as I had weekly meetings with these people, it just started feeling really inauthentic. Like, I felt kind of weird about it. I also, at the beginning of the pandemic, felt a sense of relief in a way which also was linked to a sense of guilt, in that I didn't have to expend energy getting people to feel comfortable in spaces and places with me. Like I noticed that people treated me differently. It was honestly like a social experiment of sorts of if you meet me in person versus you meet me on Zoom. So these were all the things that I talked about with Judy. But she was, she listened very politely, kindly, and was like, “No, no, you just need to always introduce yourself as disabled. Like it, this is, given your professional background especially and the fact that you're in leadership positions like, you have a seat at the table that many people don't. We need more disability disclosure for, in disability representation. It starts at the top in many ways. We need disability to be more visible in everyday settings and it's an important learning moment for non-disabled people.” So that really struck me. I was like, “You're right, you've just made this thing that I'm rambling about and I feel all complicated about, just so simple,” at least to me.

That being said, I think disability disclosure is a very personal choice. I do not judge those who don't want to publicly disclose because I know firsthand that discrimination against people with disabilities is real, and especially in the workplace that gets tricky. But Judy's point was mostly around given where I am at in my career and my specific positions and professional background, that it would just be nothing but beneficial for me to do that. And especially since her passing too, it's just reflecting on how hard she and others worked to even give me a seat at that table to begin with, like, I'm going to proudly own my identity as disabled. So I'm still getting into the habit, but I do try very hard to introduce myself as disabled. And if people do want to ask me questions, I'm open to talking about it. But yeah, I'm just very, very grateful that I got to have that personal and helpful conversation with Judy in her last days.

Jillian Curwin: I love everything about that so much. Like, I get…I'm going to…I might actually, I might truly…Because yeah, its so true. And it's like, for so many of us, and I didn't know really, or truly understand Judy's legacy or the impact that she made until Crip Camp came out because her story, the story of the disabled rights civil rights movement wasn't really told or taught in schools. And I don't think it still really is yet. Someone tell me I’m wrong if I am. Please. And you know, so for so many of us who are now entering this advocacy space or using these platforms to kind of either change it or just kind of be a voice for change, it's like you said, it's kind of like, we wouldn't have gotten here without her and without the work that she did. And to, you know, and now that she's gone and carrying on, and carrying on her legacy like, we do have a duty to kind of say we're disabled, recognizing that it, again, it is a very personal choice.

Dr. Rose Perry: Yes.

Jillian Curwin: And some of us have the, you know, have the ability to never disclose. And some of us, kind of, our disclosure, we don't have an option. We, we never have that option. We walk into a room and, you know, or we wheel into a room and, you know, so…But you know, what she was doing at a time where there was a less…society was so against wanting to see disability and what she did, and now it's like it's 2023, that fight is still ongoing. And, you know, there is that sense of, for Judy, we have to like, there is a sense of like, at least for me like, we have to say that we're proud to be disabled, because we wouldn’t…We wouldn't be where we are now if it wasn't for the work that she did and the work that her colleagues did then.

Dr. Rose Perry: Absolutely. And yeah, I just think when you really dig into all of the major civil rights movements, so much of it was fueled by pride. Pride is really like the antidote to hate in many ways, so…

Jillian Curwin: Yeah.

Dr. Rose Perry: Just also thinking of it like that has helped me as well. But yeah, it's also just, I just truly do feel authentically proud in who I am and proud in my differences and to then have connected that to stories from history that, like you mentioned, were not taught in schools, that you and I didn't learn about growing up. That is just that much more validating of I don't want to live feeling shame about this. I don't want society to tell me how to feel about myself just because they haven't done the work themselves. Right? Pride is important, I think, for sure.

Jillian Curwin: Pride is important. And it's like, there's this understanding that sometimes it's very hard as a disabled person to be proud to be disabled, and that so like, there's of course an understanding and, you know, getting there. And it really took like, watching Crip Camp and seeing and like, social media and giving, allowing us to have these platforms to see other disabled creators, activists, advocates, be able to use these platforms that have the ability to create, to kind of speak up and speak out and say, no, it's okay to be proud to be disabled. And so that the generation coming after us, just as Judy did for us, can say that, too. And I think it kind of pivots into Historicons and what you're doing, because I think that's a large part of what you're doing with that. So, can you explain where the idea came from and what it is?

Dr. Rose Perry: Yeah, yeah. So Historicons is, is a, in a way, a spinoff of Social Creatures. We, at Social Creatures, we have a social innovation lab and we create different social connection programs and products and services in general. And Historicons came about actually in the wake of the George Floyd murder. So, at the time, I was still working in my postdoctoral position, and I did quite a lot with child development back then, and I had a lot of parents reaching out to me and just being like, I don't even know how to begin having conversations like, my kids are seeing this in the news, right? Like this is so awful. This has been going on in this country for so long. Like, I don't know how to even begin to answer the questions that my kids are asking me about race in this country, and about identity in general in this country. But, but I know it's important. How do I do that? So Historicons really was born out of that line of questioning.

We're a small business and we're all about sparking productive dialogue about identity with kids in an age appropriate way. So we talk about disability, race, LGBTQ identity and hopefully many more. We're just still getting up and running. But we, we ultimately do so by having kids and their adults kind of come together to explore underrepresented stories from US history. I think that that often is a really nice springboard for having these discussions and it's twofold in that you get to learn about the stories that your kids are probably not learning about in school. So right now our product line are these puzzle games, and one of them explores Black history through the story of Little Rock Nine, one of them explores disability history through the 504 Sit-In, and one explores LGBTQ history exploring the Stonewall uprising. And basically we call it a puzzle game because each one transforms, we transform the players into a team of historians, and we tell them that their mission is to piece together the past. And they're looking for clues that are embedded within the puzzle’s design including like, the shapes of the puzzle pieces are not just like, normal puzzle piece shapes. A lot of them are like, like, one is the shape of a, a seeing eye dog, for example in the 504 puzzle. But basically, they're searching for the who, what, when, where and why behind pivotal moments in history as they work together to complete the puzzle. So it's a little bit different than reading a book. Like you're, it’s a more hands on active exploration. And a lot of times that leads to kids asking questions, right? And it's just like, a springboard for discussion. And then once you complete the puzzle, there's either, you can either reveal the physical key card that will tell you all the Easter eggs and clues and what they mean. And that teaches you the story. And there's also a QR code on the puzzles. So if you're a tech forward family, the kids really like that scanning the QR code and clicking on everything and reading about Judy, reading about Kitty Cone, reading about what the butterfly means for the Butterfly Brigade. But then we also, all of the puzzles come with glossaries of terms to help explain things in age appropriate way, conversation guides to prompt discussion on identity and diversity in an age appropriate way.

We also have lesson plans and educator packs for grades K through eight so that teachers can embed this into the classroom. But yeah, really, the goal is to A, explore diverse stories from history because they're not told as much as they should be, but B, to spark dialogue around identity and to spark pride in your own identity or allyship in others with diverse identities. So really getting out a lot of the topics that we've covered today. Like, I wish that I learned about the 504 when I was younger because I would have probably felt pride a lot sooner in my identity. And I wish that my peers learned about it and their parents had discussions with them about how to be an ally to people with disabilities and just normalizing a lot of this rather than it being the situation that you and I talked about earlier, where often we’re like the first living exhibit in this kid's world that is this current springboard for discussion, rather than something that could be taking place in the home beforehand.

Jillian Curwin: My jaw like, was dropped that whole time explaining because that's…I wish I had this when I was a younger child.

Dr. Rose Perry: Oh, thank you.

Jillian Curwin: It is, the design of this sounds so like, brilliant and like, I'm just like, can I invest? Like, what can I do to, like, boost this? Like, cause it's like, it's truly like, oh, my gosh, like, that’s just, it's that's incredible. Like, it's like, I'm speechless. That's actually incredible what you're doing with that.

Dr. Rose Perry: Thank you. Well, thank you for giving me a platform to talk about it. We hope to make many, many more not just puzzles, but other product lines that really are just a springboard for these discussions and and make it just less daunting for parents to have the conversations, because that's something that in our market research, we've learned it's just like people are generally really well-intended, but they don't know where to begin. And it's hard to always calibrate things in an age appropriate way. So we try to be there to make it a little bit easier in that regard.

Jillian Curwin: That’s just, that's incredible. Thank you for doing that. And of course, the platform is open anytime you want to talk about it. Because again, like you said, like we, and we talked about so often like, just that education I think is so important and it starts, it really does have to start at a young age. And you're now giving parents a way to do it without waiting for someone to cross paths with their child.

Dr. Rose Perry: Right. Our big mantra is these discussions should be happening early and often over and over. So we try to just be a tool to help that occur.

Jillian Curwin: Agreed. That's amazing.

Who do you look up to?

Dr. Rose Perry: Well, obviously, I look up to Judy Huemann, mother of disability rights. She's come up a lot in our conversation, but, Yeah. I would say in general, just disability rights activists, there's too many to name, but Rebecca Cokley, Imani Barbarin, Mia Ives-Rublee, love all of their work and yeah. For much of my life growing up I just didn't, it wasn't that I wasn't surrounded by great people, but I used to stress out like, in college and even early grad school like, I don't really have a role model. And it was mostly just because I didn't see people around me that I identified with. So again like, learning about Judy and her story and then having that opened me up more to the disability community. I now have too many people to look up to that I could ever name on a podcast, and I'm just grateful for that. And I think that also just speaks to the power of community and social connection within the disability community itself.

Jillian Curwin: Absolutely. And you name some pretty incredible people. And there are just so many more out there that we can all look up to.

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

Dr. Rose Perry: Um, I mean, I don't not necessarily. I think we got through a lot, right?

Jillian Curwin: We talked about a lot. Yes. And there's like, so many more I…You have to come back on to, because there are so many other things that I think we touched on but like, what I would love to delve deeper with you when you have the time.

Dr. Rose Perry: I’d be happy to come back on any time.

Jillian Curwin: Yes. it's going to happen.

So now I want to give you the space to plug yourself. Where can people follow you? Where can people read the work you, see the work you're doing? Read anything you've written? The space is yours to kind of plug, to fully plug yourself.

Dr. Rose Perry: Awesome. Yeah. So if anyone wants to learn more about my work to learn about Historicons, we're at historicons.com and @historicons on most social media, we have a pretty active Instagram and Tik Tok especially. You'll see my co-founder Rajiv over there making funny Tiktoks I'm not brave enough to do those things, but he's awesome.

And then to follow Social Creature’ work we're at, thesocialcreatures.org.

You can also find me on LinkedIn and Twitter. I'm actually going to see what my name is on LinkedIn... On Twitter, it's my full name, Rosemarie E. Perry. So you can find me there. On LinkedIn I'm Rose Perry and you'll see founder, executive director of Social Creatures. So hopefully you can easily find me over there. I've been writing some articles on Forbes lately. I've been posting all that on LinkedIn, so I think those are the main places to follow me and also feel free to email me too. I welcome emails. My email’s rose@thesocialcreatures.org.

Jillian Curwin: And I will have links to all of that in the show description, in the show notes as well as on the transcription when that goes live. So go follow, go check her out. She is doing incredibly important work and it was truly such an honor to have you on the podcast and to get to speak with you today. So thank you so much for coming on.

Dr. Rose Perry: Thank you Jillian.

Jillian Curwin: Of course, I do have sort of an icebreaker, but I do it at the end called Final Fast Favorites, just kind of like, a last little opportunity for my listeners to learn a little bit more about you. So I have five categories and I just want to hear your favorite in each one.

Dr. Rose Perry: Okay,

Jillian Curwin: Favorite book.

Dr. Rose Perry: Oh, man, this is…I have so many books Jillian. This is a hard one. I'm going to just continue with the theme. I really love Judy's book, Being Hueumann. If you haven't read it, read it.

Jillian Curwin: I second that.

Favorite TV show.

Dr. Rose Perry: I am the worst at watching things. I have a terrible attention span. Favorite TV show. You know what? I recently finished watching Jury Duty. It’s a new show. It's super innovative. I can have a whole conversation on Jury Duty, but it's entertaining and I've never seen anything like it. So that's my current favorite TV show.

Jillian Curwin: I love that.

Favorite drink.

Dr. Rose Perry: I am a sparkling water type of gal. I just like bubbly water.

Jillian Curwin: Yes.

Favorite little known fun fact.

Dr. Rose Perry: Favorite little known fun fact. My grandmother painted a portrait of one of Ke$ha's cats, the singer Ke$ha, her cat Carl. And that portrait is now hanging in Ke$ha's home.

Jillian Curwin: That is the coolest thing ever.

Dr. Rose Perry: It's a whole story, but go Grandma, you're a wonderful artist.

Jillian Curwin: That’s amazing. Last one favorite piece of advice you've ever received.

Dr. Rose Perry: I'm not going to word it correctly. But there is a saying that’s like worrying is stressing about something twice. Something along those lines. Have you heard of that? So that, that one I remind myself often because I have a overactive mind for sure. So I often have that mantra and it really helps quite a bit. I'm a nervous flier. I recently was on a plane and I was just like, we're not going to worry about this because we're not going to stress about it twice in case something bad does happen.

Jillian Curwin: Love it. That is a perfect note to end on. Again, Rose, thank you so much for coming on, for telling your story. Again, you have to come back. The door is always open. There's so much more, I would love to talk with you. But before we go, I have one more final thing to ask of you, and that is just to remind my listeners in your most fierce, most badass voice possible that height is just a number, not a limit.

Dr. Rose Perry: Height is 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 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.