Kathleen Bogart  

[0:01 - 0:23] I really do think that my early experiences with, you know, communicating differently, made me really want to emphasize being understood, and educating and advocating to others. And I think that's a lot of what I do in the classroom, you know, as well as in my scholarship and research. 

Chloë Atkins 

[0:27 - 0:32] Welcome to Season 3 of Broadcastability, a podcast by, for, and about people with disabilities.  

Lark Huska 

[0:33 - 1:25] Broadcastability is a PROUD Project production based in Toronto, Canada. Visit theproudproject.ca to learn more. This podcast was recorded and produced on the traditional and ancestral territories of the Huron-Wendat, the Seneca, the Anishnabeg, the Chippewa, the  

Haudenosaunee, and the Mississaugas of the Credit River. This territory is covered by the Dish With One Spoon Wampum Belt Covenant, a treaty made between the Anishnabeg, Mississaugas, Haudenosaunee, and Allied Nations to protect the resources of the Great Lakes and the surrounding areas. This podcast was also partially produced on the territories of the Musqueam, Squamish, and Tsleil-Waututh peoples. We also wish to acknowledge the Indigenous Nations across Turtle Island, also known as North America, where we conduct our research and record this podcast.   

Chloë Atkins 

[1:29 – 1:59] In this episode we meet Kathleen Bogart, a professor of psychology at Oregon State University. We discovered her work when we read an article in Psychology Today that, she and one of her grad students, Emma Hills, wrote about disability employment.  We were struck by the fact that many of her conclusions mirrored many of the ones which had emerged during our 5-country study when we interviewed disabled employees, entrepreneurs and employers in Canada, the US, the UK, France and Belgium. And so we were really intrigued in meeting her.  

Lark Huska 

[2:01 -  2:13] Professor Bogart shares her journey into academia as well as her evolution as disabled person. Like many of the people we’ve spoken to, she didn’t immediately identify as someone with a disability, nor with the disabled community. 

Kathleen Bogart  

[2:14 – 4:05] Well, I'm Kathleen Bogart. I'm a professor of psychology at Oregon State University. And, you know, what really brought me into this research space, and this advocacy space, and the scholarship space is my own experience growing up with a rare disability. And I often like to say that I've been interested in psychology ever since I was born, because I was born with this condition called Moebius syndrome, which is a rare type of facial paralysis. And so, you know, going through my initial development, navigating the world and learning how to communicate my needs meant that, you know, I interacted a bit differently. And I think that I kind of adopted quite, you know, quite these creative things that I wasn't even aware that I was doing at the time, right? I was fascinated by, you know, how other people communicated and just by, you know, interaction in general. So that led me to study psychology as an undergraduate. And, you know, I got some great mentorship during my undergrad and realized that I really did like scholarship and I liked research. So I wanted to continue and go to grad school. And my mentors suggested that I write maybe a research paper, a term paper about Moebius syndrome, because I was interested in what psychology had to say. So I kind of, in my head, imagined that when I went to the library, I would find like, you know, an armful of journal articles. This is like back when you would go physically to the library.  

 Chloë Atkins  

[4:05 – 4:06] I remember those days, yup! 

Kathleen Bogart 

[4:08 – 4:31] And, you know, I came away literally empty-handed. I ended up with a couple of, you know, PDFs from old microfiche. But there really hadn't been any studies done in psychology on Moebius syndrome, especially not from a, anything that's not from a very deficit focused. 

Chloë Atkins  

[4:31 – 4:38] When you say deficit focused, is that sort of as a medical model? Is that you're saying that these were only medical, clinical sort of descriptions? Is that it? 

Kathleen Bogart  

[4:39 – 5:22] Exactly. Yeah. So, you know, deficit focus would be a medical model. It's also focused on how, you know, these individuals will differ from the norm in a negative way, in a way that is negatively valued by our society. Or, sometimes it was involving participants with Moebius syndrome and using them as a way to understand—just as like a tool to understand typical neurological development—rather than having an interest in understanding the experiences of people with the condition themselves to benefit that community. 

Chloë Atkins  

[5:23 – 5:36] Right. So it was sort of what was typical psychological neurological development around facial recognition and communication and what Moebius was sort of an interesting case in order to study these other things. Right. 

Kathleen Bogart  

[5:36 – 5:50] Exactly. Yeah. It's like the history of, you know, psychology, looking at all sorts of, you know, unusual and interesting cases to learn about, you know, like the case of HM to understand memory and things like that. 

Chloë Atkins  

[5:50 - 6:34] Right. Exactly. Okay, understood. So let me just back before we get into your work, and maybe you're not comfortable about it, but I'm intrigued when you have a chronic illness or you have a chronic syndrome or a syndrome that's different, particularly one that affects your face, because your face is so critical. One of the things that, I mean, at least I've read, and you can tell me I'm wrong, is that one of the more difficult things is when you have like a scar, or you have a wine stain, how much it impacts your interactions with other people. And I was wondering whether as a child that was easy, or even as an adolescent, I guess, emerging into adulthood, whether that was more difficult or easy, or it just it was fine, you know, what your perspective on all of that was?  

Kathleen Bogart  

[6:35 – 7:43] Yeah, yeah. So facial expression and appearance is really kind of, as you say, the one of the primary ways that other people form impressions, at least at first, right? It's what people are accustomed to being like, one of the more communicative parts of ourselves. In my case, it's not so. But it makes sense that most people would be accustomed to that. So yeah, you know, it was quite challenging. As a child, it was mostly challenging in that, you know, I needed to learn how to communicate, you know, my needs and wants. As an adolescent, it became more, you know, about stigma and looking different, and communicating differently. And I think so many people who have a disability or a visible difference, go through a really hard time of bullying in adolescence, when, you know, people are, the developmental milestones, they're so focused on being normative and fitting in and stuff like that. 

Chloë Atkins  

[7:43 – 8:40] Absolutely. You know, they are really normative. The reason why I ask is, we do research on employment, and the transition from school to employment is one that's really difficult, because often in school, there's sort of required a regulatory sort of parameters around which someone has been sort of, they've been part of, and they get used to, and then they go out into the young world of young adulthood, and then try to get jobs or try and then encounter difficulty there. Some of them don't, but it is seems to me, it marked in when we did this large study, that this was a—that was a very important period for people, right, how they transitioned through that. So, yeah, anyway, I can imagine that, I mean, academic, I did, I ended up in the academy, largely, because it seems the most accessible to me as someone with a disability. I don't know whether that was the case for you, whether you contemplated other professions, or you just were really attracted to media, it was your nature to like research and the academy. 

Kathleen Bogart  

[8:41 – 9:19] Yeah, I mean, you know, I think if you asked me at the time, I would have said it was my nature that I really liked research. But I also think looking back, there may have been some aspects of my disability that led me to like that sort of thing. And I really do think that my early experiences with, you know, communicating differently, made me really want to emphasize being understood, and educating and advocating to others. And I think that's a lot of what I do in the classroom, you know, as well as in my scholarship and research.  

Chloë Atkins  

[9:20 – 9:32] So you describe as you went off to the library, you came back empty handed, and what you did find you must have wanted to take a hammer to. So go ahead from there. Tell us about that. 

 Kathleen Bogart  

[9:33 – 11:18] Yeah, yeah, I mean, it really left me in this kind of like, at this crossroads. So, you know, the message that I got from that literature was, okay, well, psychology is not interested in experiences of people with your condition. So I could either take that information and say, “okay, psychology is not the field for me.” Or I could take that information and say, “I'm gonna make it the field for me.” You know, “I'm gonna make psychology care about, about this stuff.” And, you know, talking with my mentors, I did decide to go that route. And it was a hard route, especially at first.  

You know, psychology is very much, when you're applying to grad schools, focused on you finding a fit with a mentor who will, who has expertise in exactly the area of work that you want to study. Well, we just established there's no one like that in the field, right? So it was really hard to find people who had interests and motivation to do this kind of work, and were confident that they could work with me, even if they didn't have that expertise in the specific area of facial paralysis. But luckily, eventually I did. I would describe those people as just like, really open-minded and creative. You know, they said, you know, “I don't, I don't specialize in facial paralysis, didn't really know much about it until you came along. But I know about, you know, things like disability or facial expression, and I'm willing to learn along with you.” So that's, that's kind of where we went from there. 

Chloë Atkins  

[11:18 – 11:37] So it had disability studies, because I'm a political scientist, and it really, until very recently, had not penetrated their understanding of social justice to any degree. I'm wondering, was psychology different? Was there an awareness of critical disability studies? Or, you know, how did, how did those two intersect for you? 

Kathleen Bogart  

[11:37 – 12:34] There were really small, tiny pockets of awareness back when I was starting up. It really hadn't been well integrated. Now, you mentioned social justice, and I think psychology would have said, and still does, that it has a strong focus on social justice. However, and so like my chosen field of social psychology also has a rich history of studying prejudice and discrimination. And so that aligns with social justice. In my opinion, it absolutely aligns with the experiences of people with disabilities. Although the field has not historically seen it as such. So, you know, maybe it's like, we're going to study prejudice and discrimination. And we're going to focus on, you know, certain key groups like race and gender and sexuality. But until quite recently, disability was, you know, kind of an afterthought. 

Chloë Atkins  

[12:35 – 12:41] I would say much the same. Can you tell, for people who don't know, tell us a little bit more, what is social psychology? 

 Kathleen Bogart  

[12:41 – 13:48] Yeah, so social psychology is really the study of, let me go back to my like, definition that I tell my students at the start of the term, it's the study of the thoughts, feelings, and behaviors around social situations. And so what I remind my students is that's really broad. We're always doing social psychology, even when we're alone, right? Because I like to say, I am often doing my best social psychology when I'm alone in bed at night thinking about that weird thing I said nine years ago. You know, so we are constantly thinking about our interactions and about others, even when we're alone. So yeah, it kind of pervades everything. Some common topics that are studied in social psychology are things like political psychology, prejudice, intergroup relations, relationships, and things like that. 

Chloë Atkins  

[13:49 – 14:15] Fascinating. I mean, it's interesting when you say that there are times where I will think of something exactly like I said a decade ago, even more than that, and I'll find myself blushing. And I'm just like, “wow, that's amazing. Like, how can I have a physical response still to something that is just a memory or a recollection?” But you still do. And again, it's around social interaction. So yeah, outline your course of study. I'd love for you to share it. 

 Kathleen Bogart  

[14:15 – 16:07] Yeah. Well, you know, the work I did in grad school really was focused on building up the literature on Moebius syndrome and then facial paralysis in general. And so, you can kind of track my research program over the years by kind of watching me expand my community of interest more broadly into these concentric circles. 

So I started with Moebius syndrome, and I felt it was really important to have some literature based in that area so that the next generation of people like me who were interested in learning about the psychology of Moebius would have somewhere to go. But then as I started connecting with communities, I started going to Moebius syndrome foundation conferences, met hundreds of people with Moebius syndrome, even though I was told that because of the rarity of my condition, I would never meet someone in my life. So that was really special. And spending all that time with the community really helped me to see the shared common experiences, strengths and struggles that people have. And I also started to recognize that there are these other people coming into our communities, like people with types of facial paralysis. And then I started to kind of broaden still to rare disorders as a whole and started to attend conferences and groups for people with all sorts of rare disorders. As you well know, there's more than 7,000 different rare disorders, and they all come with their own unique medical manifestations. But there are a lot of commonalities at the psychosocial level. 

 Chloë Atkins 

[16:07 – 16:15] Is that what got you interested, were the commonalities shared across the various rare disorders? And what did you find? 

 Kathleen Bogart 

[16:15 – 17:06] Yeah. You know, I saw the same stuff I was seeing in the Moebius syndrome community. So I saw stigma. I saw isolation. I saw challenges around, you know, diagnostic odyssey. So this, you know, average seven-to-nine-year journey to get a diagnosis. But I also saw, you know, a lot of cool things like the benefits of connecting with a community of people like you, and how that supports identity, how that supports companionship support. And, you know, that's kind of led me to some more recent interests like disability identity, disability pride, and things like that. 

 Chloë Atkins 

[17:07 – 18:58] One of the things I'm really fascinated, I was actually reading, so I've been thinking about disability for a long time. I don't like the word, I have to say. I don't like the “dis” of disability. I find it, I stumble on it a bit, but you know, that's what we have. There's the French when we were doing a study there, I really liked there, the “person en situation de handicap,” which is a person in a disabling context, which I kind of liked a bit better. It's a handful to say, it's a mouthful to say. But disability identity: so one of the things I was actually reading an article recently, actually to my family, you know, I've forgotten what journal was in, he was talking about that, you know, young adults were sort of, these are 18-year-olds, 18- to 25-year-olds were saying that 18% of them, this was, I think it was in England, identified as disabled. And there's another study that CDC did in 2018, but they published in 2019, that 18- to 35-year-olds, you know, 52% of them identified as having a chronic illness of some sort. Now, you could say, okay, that's just depression, it could be “just” depression or anxiety. I mean, these are not “just”, but you know, that they're not things that necessarily another generation would have identified with that maybe this is over medicalization. So, and even as you were talking about, I had a really long journey to diagnosis. And that diagnosis is really important at some level, because it helped it finally to get some control over some of my symptoms. So this, this walk between medicalized naming of things, and which is actually you can't get rid of, and at some level important, but also disability identity, and that it seems to me that it's an expanding category. I don't know what you find, what you're finding. 

 Kathleen Bogart  

[18:59 – 21:38] Yeah, yeah, there's a lot there, a lot and lots of balance, right. So, so we also see that, like, according to the American CDC, that 26% of adults in America have some sort of disability. So really, you know, more than a quarter, this large chunk. So I think there's a lot going on. And I think most of this is a good thing. And let me say why. So what we're talking about here is disability self-categorization, which is different from disability identity. So these are people who are saying, “I have a disability, this condition that I have is a disability.” And under, you know, many, you know, civil rights laws, like the Americans with Disabilities Act, recognizing that your condition is considered a disability is a gateway to recognizing your rights, right. So understanding that you can't be discriminated against in a job setting, understanding that you are able to request reasonable accommodations and things like that. So I think in many ways, it's a good thing that people are recognizing that certain conditions are considered disabilities, especially in countries that provide those sorts of rights. I also think that there is a good thing about understanding that disability is broader than people think, because still people have a prototype of what disability looks like. Right? And within that statement, I just said, is the implication that disability is always visible. But in fact, most disabilities are invisible. And so we tend to assume that there are less people around us with disabilities than they are just because we can't see them. So it's actually, I think, it can be really helpful for the kind of collective cause for more people to self-categorize as disabled, because it's it helps us recognize that it is a large and impactful group. It's a group that, for example, has collective voting power, collective advocacy power. Now, I said, I feel that there's a distinction between disability self-categorization and disability identity.

Chloë Atkins 

[21:38 – 21:41] Thank you. Tell us about that, yeah, tell us about that. 

 Kathleen Bogart  

[21:42 – 22:34] Yeah. So, so you can say, you know, or, you know, yeah, someone could say, “I have depression. And depression is a disability.” Okay. So that person may say, I have a disability. But that person may be less likely to say, “I am a disabled person.” So disability identity means that a person sees their disability as more central to their identity than, you know, the words that I just used kind of distance the person from the disability, right. Rather than saying “I'm a person with a disability” or “I'm a disabled person,” which is bringing the disability closer to one's own identity. 

Lark Huska 

[22:34 – 22:01] Yeah and I think, like, if we think about mental health in particular, I think broader society understands it not necessarily as a disability, especially in more frequently, or pardon me, more recently mental health is being more accepted, and therefore more people are identifying as having mental illness. It's like, oh, well, that's just normal. Welcome to personhood. It's not a disability. Because we can't have the whole population be disabled, quote unquote. 

 Chloë Atkins  

[22:01 – 24:30] No, you're right. I mean, it's interesting what you say, Lark. And one of the things we've run into, I've just tried to get an article into Disability and Society. And we've now rewritten it, you know, we've run the second revision, and they're a British disability magazine. I mean, journal, not magazine. But they were appalled that we would use “a person with disability.” It's got to be “a disabled person,” because that is an act in which you have, someone is impacted negatively, the disability is in a sense contextual, right? And it is, disability is deeply contextual. And that “person with a disability” doesn't capture that essence. And so they felt that, you know, they asked us to remove whenever we use that. And I, I tend to, I usually put a mark at the beginning of the papers, look, I'm going to use various terms just for ease of like, speaking it and thinking it's just, you know, so it's not constant and boring, the same term used over and over again, but they were adamant. So it's interesting that for UK disabled advocates, they need to feel, they want “disabled person,” because that captures the political sort of oppressive nature or the constraining nature that happens from outside. And what you're sort of saying is similar that people say, “I have a disability,” but they may not want, in fact, capture that the identity that means that they are then part of a group that is somehow being excluded. If that does that make sense? Is that what you're saying? Or am I wrong there? 

 Kathleen Bogart 

[24:31 – 25:38] It is. Yeah. And right, this is part of the wider, like conversation around person-first versus identity-first language. And as you say, the UK has really moved to identity-first language. And I think in North America, it's, you know, when I was coming up in school, I was told you always have to use person-first language, you always have to say, you know, “person with a disability.” And more recently, like, for example, a big movement was when some colleagues of mine wrote to the American Psychological Association and said, “hey, you know, there's really good reasons to use identity-first language. And here they are, maybe you should change your guidelines.” So they did change their guidelines a few years ago to allow for either-or, or switching. And so kind of like you, I switch a lot. I switch because it, you know, kind of linguistically makes sense. And I also switch because I want to, like, acknowledge that there are multiple ways that people might want to identify. 

 Chloë Atkins 

[25:39 – 26:19] Right, I mean, we're getting into a place that I mean, I want to ask you these questions, because one of the things I've been trying to think about is how do we maybe have a new understanding of disability that we can sort of, sort of move it along. And I am probably not the best person, but I, and I've look, I've got friends who totally oppose this, but I've been thinking about the contextualization of disability. So if you wore glasses in 1200, well, you didn't wear glasses in 1200. Because simply it was not possible, like and you would have been quite impaired as a result of that lack of technology. And so, as you take yours off, exactly.  

 Kathleen Bogart  

[26:20 – 26:22] So thankful for them.  

 Chloë Atkins 

[26:22 – 27:54] Exactly, exactly. And so one of the things I've been thinking about, and even as Lark was talking about, you know, being alive means that you have mental health, like there, there are things that are going on at some level. So part of me thinks of that we have traits, and some of them are more severe than others and require more technology or accommodation, depending or just adjusting than others, and some don't. And I would love to think about traits. And again, the when I even use the word traits in our paper, I was asked to remove it by Disability and Society. So we did. But and I know a number of people object to it. But I've just been thinking, is there a better way of understanding who we are as humans? Because one of the things that I feel is a benefit of disability is people with disabilities are enormously adaptive. And as you started this conversation, and maybe we can get to that is talking about how adaptive you had been without even realizing it in terms of how you communicated, how you did things. Because in essence, you were problem solving all the time, you were thinking on your feet and moving. And I think that often people with disabilities, like, yeah, are just have a remarkable ability to adjust. And but they also reflect, I think, in a unique, unique, innate, human capacity to do that all the time that we do that as humans, you know, we adjust constantly to circumstances and disability in a sense is sort of a glorious example of how we do that. I don't know how you think about anything I've just said, but I'd love to hear your views. Because I think you're more learned in this than I am. 

 Kathleen Bogart  

[27:55 – 29:33] Well, I definitely agree with you about the kind of innate adaptiveness and adaptive capacity of humans. And I think disability is really one of those, like situations that showcases it. And I think disability can often, you know, enhance creativity. And, you know, I also kind of do this line of research that looks at, like, the timing of when someone acquired their disability. And so, some of my work focuses on that contrast between congenital or something you're born with and something you acquire later. And this kind of circles back to what you were talking about around adaptation, and kind of the timing of it. So, you know, I had this idea that people who were born with their conditions, especially if we're talking about a stable condition. So facial paralysis is typically a stable condition. My, you know, the level of paralysis I was born with is not going to change. So I went through my initial adaptation with my condition, I needed to figure out how to have my needs met, I needed to communicate when I was when I was hungry, when I was sick, et cetera. Right. And so those are all things that any newborn will do with the infrastructure that they have with the bodily, you know, abilities that they have. 

 Chloë Atkins 

[29:33] Exactly. Right. 

 Kathleen Bogart  

[29:33 – 30:33] So I did it with mine. So it was, you know, a natural-feeling process. And so I was interested in, you know, first of all, whether other people with facial paralysis also kind of adapted to communicate in other ways. And by other ways, I mean, you know, maybe if your face isn't particularly expressive, maybe you're more expressive with your voice, with prosody, with your gestures and body language and things like that. So I did some research on people with a variety of types of facial paralysis, those with congenital, and those with acquired and interviewed them. And actually, then we coded their nonverbal and verbal expression from videos. And we did find that those with congenital conditions use more of this adaptive communication. We call it alternative communication. 

 Chloë Atkins  

[30:33 – 30:47] What is it when you say, what is it? Give us some examples, because I can maybe see it as even as you're talking to me, but other people can't. Like, to me, it seems you use your hands, you're moving your body. You're nodding. But is that what you mean? Those types of things? 

 Kathleen Bogart 

[30:48 – 31:35] Exactly. Yeah. So all of those things that you can pick up from what we call other communication channels besides the face. So we've got gestures with our arms. We've got body language. So that could include like, your posture and where you're leaning, right? Like, if I'm really excited about something, I'm going to lean in. And it's going to include like, the tone of your voice as well. And actually, what you say, right? So we actually found that people with congenital paralysis used more emotion-words than those with acquired paralysis, suggesting that, you know, if they weren't sure their emotions are being conveyed nonverbally, they just said how they were feeling verbally, right? 

 Chloë Atkins  

[31:36 – 31:51] That's fascinating. So this, tell us more. So the study you did, you did about acquired versus congenital with regard to facial paralysis. Did you learn other things around this around the timing of when you actually get an impairment or, yeah? 

 Kathleen Bogart  

[31:52 – 35:25] Yeah, well, this, you know, this was actually kind of inspired by that first step out of the concentric circle that I talked about going from Moebius syndrome to facial paralysis in my research. And I can tell you a little story about how that happened. I did my master's in San Francisco, and then I moved to Boston to do my PhD. And Boston is, you know, in like America, like the place you go for the highest quality and most specialized medical care. And so, it was the first and probably only time in my life, I will be in a place where there was a local facial paralysis support group. And I was like, this is really cool. I've been to Moebius syndrome conferences where I had to travel, you know, across the country, and everyone else did the same when we were together, but I could go in my own town once a month and see people. So, you know, I'm really excited. I go show up for my first group, and I noticed that everyone else has acquired paralysis, except me. I'm the only person with congenital paralysis. And statistically, that makes a lot of sense. There are many more ways to acquire paralysis at some point down the line, especially from things like Bell's palsy, or Ramsey-Hunt syndrome. So, you know, I'm like, no matter, you know, we all look the same to an untrained eye. We've all got facial paralysis. But I found the conversation very interesting at first. We went on the room and introduced ourselves, and everyone else had an origin story to their condition, right? So everyone else had, you know, this is the day it happened. This is, you know, the confusion that we went through, the pain. And, you know, this is how my life has changed. And I didn't have an origin story, right? It's impossible for me to, like, you know, separate my condition from my identity. So, you know, that really got me thinking. And there was, there are lots of examples of this, but one particular story that someone said, she had recently acquired facial paralysis. And she said, “you know, sometimes it's the little things that really get you.” She said her favorite thing to do on Saturday mornings was to, like, enjoy breakfast and a coffee over the paper. And she said, well, “I can't do that now because when I'm reading the paper, I'm dropping food out of my mouth onto the paper and spilling coffee. It's a mess.” And, you know, I thought about it for a second, and I was like, oh, I don't have that problem. I wonder why. And then I thought a little bit more, and I realized, oh, you know, I do love to read. I also love to eat. They happen together sometimes. And, but usually what I do is I'm propping up the reading material. So, when I'm eating, my, you know, gravity is not pulling food out of my mouth. And that's not something that I ever consciously thought of, that that must have been one of those seamless adaptations that I developed. And I think that there are so many examples of that, you know, and that's really what kind of, you know, supercharged that line of research, looking at adaptation and how it might differ across time. 

Chloë Atkins  

[35:25 – 36:58] So, do you think that, I mean, obviously there is trauma associated with, and when you acquire a disability, there is this trauma, and there is a belief, you know, there's the number of times you've seen movies, read scripts, read books. So, you know, “if I can't walk, then, you know, don't, you know, don't keep me alive.” Or, you know, whatever these sort of dramatic poses are. If this happens to me, I don't want it. And part of me actually, as I've worked as a bioethicist in hospitals, and one of the things that I struggle with is that we project, like, there are things that happen to us that we imagine we can't cope with, and that we imagine we cannot have a good life with, when we feel totally whole and normalized. And then we encounter those things and discover, “oh, no, actually, no, I can live with this. And in fact, I can have a very meaningful and good life.”  

So, did, you know, as a psychologist, when you were looking at the differences between an acquired and congenital, were there other things that you discovered about people around this or not, or a sense of stigma? I mean, one of the comments we got from in France, I remember an employer saying, because they have a court of law, and he said one of the problems they had was that people wouldn't identify. You know, you could have had an amputee working in your office, but if they didn't officially identify, they couldn't be, they didn't count, right? And so, and they didn't identify because of stigma, right? They did not want the stigma. So, I'm intrigued by that. Did you find any of those types of things going on? 

 Kathleen Bogart 

[36:59 – 40:15] Yeah. Well, we definitely, you know, continued this line of work. We moved from facial paralysis specifically to looking at other types of disabilities. And the next project I did was on mobility disability. So, again, this is a good kind of test case, not just because it's a very common disability, but also it's one that can be either congenital or acquired. So, you know, for congenital, you've got examples of people with cerebral palsy and like spina bifida. And for acquired, you know, you might have spinal cord injury or a variety of other things. We wanted to focus on people with relatively stable conditions because we recognize that conditions that progress or conditions that are episodic involve constant adaptation, right? And that is an interesting and other story that we can kind of layer on top of this. But, you know, we were interested first in like, what if we just look at stable conditions? And so, in that situation, we did find kind of a replication of what we found in the facial paralysis work that those with congenital conditions seem to be faring better. And what we looked at was satisfaction with life in general. 

 And we found that those with congenital conditions had higher satisfaction with life and that that was actually mediated or like correlated with, see, these are the mechanisms we think might be happening. And that is what I call disability self-concept. So, this includes disability identity, feeling that your disability is an important part of you, and that it's a positive thing. And that also includes disability self-efficacy. And that means that you are confident that you can navigate your world and navigate challenges that come up regarding your disability. So, that's really like confidence in your adaptiveness. And so, those things were higher in people with congenital conditions. And so, you know, we suspect what's going on is that when people go through their initial development naturally, learning how to navigate the world and interact with people alongside their disability, people, you know, can develop these adaptations very fluidly. And, of course, as you say, sometimes acquiring a disability includes trauma. It also includes for everybody the experience of having a changed identity and a change in function. And many people are really good at adapting and bouncing back. But we do contend that perhaps there's a bit of an advantage if you go through it in a certain critical period of time early in life. 

Chloë Atkins 

[40:16 – 40:25] So, oh, wow. So, if you have something happen, let's say, before the age of 25 or the age of 30, is that what you're thinking? Or did you figure out what that critical time of life was? 

 Kathleen Bogart 

[40:26 – 41:26] No, I mean, that's a million-dollar question for sure. But, you know, what we really need are some really cool large-scale longitudinal studies to know if that's, you know, really a thing or not. But, you know, I think, you know, what we're suspecting is that it's like a critical period probably early in life, you know, maybe before 5 or 10 or something like that. And it may depend on the disability. So, for example, there's already a large body of research on deaf people and their experience with deaf identity, with language acquisition. And we know that that can mirror the critical period for language acquisition that's understood that all children have when, you know, it's relatively easy to learn other languages. So, I think that's a nice model that we might explore. 

 Chloë Atkins 

[41:26 – 43:33] Right. No, I mean, the deaf community is an interesting one because, I mean, I know members of the deaf community who, for instance, they're my age, so they're not young, but they were brought up to, they were congenitally deaf, and they were expected to learn how to lip read rather than to use sign. And at some level, they now sign, they do both, but they were deprived of communication at a critical stage in their lives. And what I find interesting is there's some families who continue not to have learned sign, that the expectation is that that person will engage with them via, you know, normal channels, right? And, yeah, no, deafness is, as you were talking, when you brought it up, it was exactly what I was thinking of in terms of longitudinal studies.  

And it's also one, I mean, one of the things I was thinking about, we were talking to another individual about disabilities, sort of a historian and writer, is about aging with disability. And so, you know, there are certain disabilities that are harder to age with than others. And I think mobility impairments are one of them that become quite difficult because you're using your bodies in ways in which wasn't designed. For instance, using your shoulders and arms, where if you're using a manual chair or using crutches, that, you know, they are great for a while, but after a while, they aren't so great. They hurt, right? 

But being deaf, I don't think changes that much. Fundamentally, you might get more deafness, but in essence, if you use sign and you've already developed your adaptations, you're not likely to change those very much. So, at some level, it's stable, that stability of a disability. I mean, I always find it, I mean, it's only the second time, but I find it absolutely fascinating to talk to you. You know, your grad students and your students must love listening to you, listening to the work you're doing. If you had a, you know, what do you want to be doing? What are you doing now? What do you want to be doing in the future? Tell us about that. 

 Kathleen Bogart 

[43:33 – 46:46] Yeah, yeah. Well, thank you. And I love talking with my students and grad students, too. It's the best part of my job. And really, my answer to you is kind of whatever my grad students are doing. So, I've been very intentional recently to bring on grad students with interest in intersectionality, which I think is really underrepresented, in at least my neck of the woods, disability psychology research. So, you know, we're doing a lot of stuff around how having, you know, at least one other stigmatized identity along with disability, you know, it's not just an additive stigma, it's an interactive stigma. You know, it creates something new and different that really hasn't been examined much yet.  

And so, like one example of a project that my student Marissa Crowder is working on, she's interested in visible disability. A lot of our work lately is on what we call observable or visible disabilities. And her work has been around how people of color and people and white people kind of experience differences in how people react to their observable disability. And so, some of her early work is showing that one way people cope with experiencing discrimination is to move towards your in-group, right? So, if you experience discrimination and you attribute it to racism, well, you might go spend time, get some solidarity with your Black friends. If you experience discrimination and attribute it to your disability, you may go spend some time with your disabled friends and be like, “wasn't that BS,” you know, and stuff like that. But if you have both identities or more, it's really hard to make an attribution about what the discrimination was for. Was it because you're Black? Was it because you're disabled? Was it because of both or something else altogether? 

And what we find is that people of color seem to feel less comfortable moving to disabled spaces to cope than they do with moving to spaces with their own racial or ethnic group to cope. But if they go to that racial or ethnic group to cope, they feel that they're leaving out their disability identity. So, there's not these opportunities in groups to really kind of have both represented. 

 Chloë Atkins 

[46:46 – 48:41] I mean, as you say that one of the things that I was thinking about that I think particularly in the US, the experience of being Black is different than, let's say, being Black in, let's say, France, or being Black in Africa and being disabled, right? I mean, obviously, they're going to be different. There's racism everywhere. But I do think that there is a character to American racism that has been deeply structured by the slavery that was across the continent. I mean, in South America, the same.  

You know, I've been thinking about intersectionality as well. But one of the things I'm interested in is that I do think it's hard to know why you feel discriminated against. I mean, as a woman, if you're a disabled woman, I think that is, there's one of the things that I used to think about. I happen to be gay as well. And I don't know, it's not really clear to me. I think you just wander through the world. For me, the identity I took, I was really slow to take up the identity of disability, even though I was in a wheelchair, like, used a wheelchair for 15 years, could not use, I had to, right? And now I have choices. But the thing that I found is that I didn't identify as disability until finally, you know, just sort of punched me in the face that everybody else saw me as disabled. And if I didn't take a hold of this, it was the same thing around being gay. I didn't wake up every morning and sort of think, “oh, I'm a lesbian,” isn't it? You know, I just carried out my life, but everybody else saw me as a lesbian. And so therefore, I kind of had to manipulate, I had to grapple with it. And that was my experience. I think for some people, they embrace disability pride far more easily, far more readily than I did. I'm wondering whether you find that as part of this sort of, how you find that in identity about how people identify in all of this? 

 Kathleen Bogart 

[48:42 – 50:01] Yeah, yeah, for sure. So what you're talking about is kind of identity centrality, like whether you see this as like, you know, kind of the primary thing about you. And it's pretty rare in disability. And also, side note, I very much relate to what you were saying, even though I was born with my disability, I didn't know that it was considered a disability. And then further, once I knew, I still didn't want to identify for a while. And so I didn't really identify and kind of start to do disability related research until my mid 20s. And so it's 25 years with my disability without that identity. And right, I think it's, I think there's a lot of things going on there. I think a lot of it has to do with stigma, fear, discrimination. I also think it has to do with, you know, how, just how central is your disability to your life. Mine is quite central now, because I'm a disability researcher, right? But some people, I think, can have a neutral or positive view of their disability, but it's also just not very central to, you know, their everyday life, their career, their relationships and things like that. And that's great, too. 

 Chloë Atkins 

[50:01 – 50:30] No, I think it's great, too. And I think in part that reflected my, like, I didn't want it to be central to my life. I wanted it to be sort of a part of me, but not the part of me. Right. And I know, I'm aware that time is running out. Just, you know, quickly, what would you advise a young person who, let's say, either has Moebius syndrome or another disability? What would you advise, knowing what you know now about having lived with this, but also doing the research that you do, particularly? 

 Kathleen Bogart 

[50:31 – 51:27] Yeah, I mean, I would advise, going back to what we were saying, that we are so, we have so much capacity for adaptation and for creativity. And I will also emphasize how beneficial it can be to connect with a community. So maybe that's other people with your specific condition, or maybe you have a really rare condition that's not possible for you to connect with someone locally. But there are plenty of ways to do that online now. But also, there are plenty of commonalities, you know, across conditions. You don't need to find someone with your particular condition. But that shared experience of moving through the world differently and having to be a creative adapter can be really neat when finding solidarity with others. So that's what I'll leave you with. 

 Lark Huska 

[51:30 – 51:53] What an excellent conversation! It was awesome to hear about Dr. Bogart’s academic experiences and how she persevered to create more inclusive spaces in an area that didn’t formerly include her. It was also so interesting to hear her thoughts on disability identity: how a person can possess a disability but still not identify as disabled. This makes me think about the HIV/AIDS safe sex campaign that Chloë often speaks about... 

Chloë Atkins 

[51:53 - ] Yeah, you’ve probably heard that story one too many times! But during the HIV/AIDS crisis in the 1980s and 1990s, public health professionals wanted to encourage safe sex practices amongst gay men as the virus was spreading through sexual contact and was ravaging the homosexual community. They posted flyers in the San Francisco transit system but saw no drop in HIV numbers. Things changed when they re-wrote the flyers: Instead of wording the title as “if you’re gay, you should use condoms. . .” they altered it to say “if you’re a man having sex with men, you should use condoms.” The clinicians and social workers initially didn’t understand that not everyone who was male and having sex with other males saw themselves as “gay” and so they originally didn’t read the posters because as far as they were concerned, they weren’t addressed to them. Anyway, infection rates began to fall once people grasped the fact that Identity is far more nuanced than they realized. People self-identify in ways that may not reflect the manner others perceptions of them. 

Actually, when we listen to Kathleen Bogart, I realize that I very much had a similar story of identity and disability. I didn’t immediately identify as disabled, nor did I really want to be a member of the disabled community. That’s of course changed. But it changed as my understanding of identity changed across time.  

Lark Huska 

This episode of Broadcastability was hosted by Chloe Atkins, a professor at the University of Toronto and an anti-ableist researcher, and Lark Huska, an undergraduate researcher at the University of Toronto and communications officer for the Proud Project. This episode was also edited by Lark Huska. Isabel Abukumovic-Poynton created the artwork, and Justin Laurie composed the music. 

Broadcastability can be found on Apple Music and Spotify and at broadcastability.ca. Broadcastability is a PROUD Project production, based in Toronto, Canada. Visit theproudproject.ca to learn more.