Disability, Fragility, Vulnerability
10/1/21 - Emily Ladau and Kelly Dawson return to dispel dull narratives around disability and go beyond the 101. How coping with fragility creates resilience. How friendships deepen with the knowing and trust that disabled people share. What allyship looks like to them as physically disabled women. The hypocrisies of non-disabled people's reactions to COVID, and, in its wake, how we can all look more closely at what it means to live a full life.
Transcript below.
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CREDITS
Executive Producer: Gina Delvac
Hosts: Aminatou Sow & Ann Friedman
Theme song: Call Your Girlfriend by Robyn
Composer: Carolyn Pennypacker Riggs.
Producer: Jordan Bailey
Visual Creative Director: Kenesha Sneed
Merch Director: Caroline Knowles
Editorial Assistant: Mercedes Gonzales-Bazan
Design Assistant: Brijae Morris
Ad sales: Midroll
LINKS
Emily’s new book, Demystifying Disability
Demystifying Disability, Emily and Kelly’s 2019 conversation for CYG
On becoming friends with a non-disabled person - Cup of Jo
What is disabled motherhood like? - Cup of Jo
TRANSCRIPT: DISABILITY, FRAGILITY, VULNERABILITY
[Ads]
Aminatou: Welcome to Call Your Girlfriend
Ann: A podcast for long distance besties everywhere.
Aminatou: I’m Aminatou Sow.
Ann: And I'm Ann Friedman. On today's agenda. We are talking about disability or rather we're not talking about disabilities. We are passing the mic to two familiar voices here on CYG. Emily Ladau and Kelly Dawson. They're both incredible writers, activists, thinkers, like people we love having in our orbit. And they last were on the show in 2019 when they had a conversation about kind of disability 101, honestly. It was really about their experiences as disabled women and what they wanted the CYG community, particularly non-disabled members of the CYG community to kind of know, and understand about their experience and their lives. And about the way ableism operates in the world. Now it's a few years later and the world is really different for us and also for Emily and Kelly. First of all, they've really become closer friends. So we're getting a conversation between two people about the power of friendship, particularly when they share an experience like disability and as they navigate this ableist world, they have a really, really beautiful dynamic that like I'm so excited. We get to listen in on. The other thing that's going on is that they are both very much public figures who exist publicly as disabled women. Since 2019, Kelly has been writing about disability quite a bit more. And Emily has this brand new book out called Demystifying Disability, which they'll talk about more in their conversation. And so they're able to discuss, like, what does it look like when sharing your experiences is one of the only paths that you can see forward to a less ableist world and what that extracts from people who are asked to generously share of themselves again and again, they also talk about their experiences of the pandemic and what it's been like to witness the callousness with which this world treats disabled people. And also the ways they felt really equipped for the pandemic in part, because of their experiences as disabled women and how powerful the process of learning and relearning your body can be and reassessing your body's particular strengths and vulnerabilities, you know how that process can be fruitful, not just limiting. And finally, they asked some really important questions about, um, the assumptions we all make about what a good life looks like.
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Ann: I really just can't say enough about how grateful I am that they've shared this conversation with us and they've included us in their generous vulnerability. So real quick, because I do want to formally tell you about all the great things they're up to. I'll say that Kelly Dawson is a writer, editor, and media consultant. You have probably read her work in a lot of shelter magazines. She writes a lot for Architectural Digest and Dwell, and she is the regular guest editor for Refinery 29’s Voices of Disability series. Emily Ladau is a disability rights activist. She's also a writer, and storyteller, and a communications consultant. She's the editor-in-chief of the Rooted in Rights blog, co-host of the Accessible Stall podcast. And her new book is called Demystifying Disability: What to know, what to say, and how to be an ally. Here are Kelly and Emily.
Emily: Hey Kelly
Kelly: Hey Emily.
Emily: So after you and I recorded our first round of CYG in 2019, I actually got an email from an agent, her name is Laura Lee, and she said, Hey, you know, I heard you on CYG and I remember that I read an article that you wrote, and I'm wondering if you ever considered writing a book. And I was like, maybe in the distant future, I don't know. And she was like, okay, how about now? So I worked on a proposal with her and originally I was going to tell the story of my experience as being a disabled daughter of a disabled mother, but she actually helped me reframe what I was going to write about. And she was like, your personal story is really interesting, but have you noticed that there's a gap in the market around a book that actually explained some of the basics of disability? And I was like, yeah, you're right. And she was like, okay. So how about you tackle that and write that book. And somehow I overcame my imposter syndrome. And now here we are a couple of years later and I have written a book called Demystifying Disability: what to know, what to say, and how to be an ally. So kind of in a wild ride these last couple of years for me,
Kelly: It's been a while, but really wonderful. Right. I'm so, so proud of you. I know we haven't spoken yet about you know, the book being out in terms of my feelings about it. And I wanted to wait to talk about it on CYG because truly as I was reading it, I was just like, this is so, so kind like I literally kept saying that out loud, this is so kind the way that you speak about disability, the way that you make it, just so welcoming to people who maybe have never spoken about disability with their friends, have never interacted with someone who's disabled. You really broke it down in such a way where it's not intimidating and also very insightful. And also there are so many funny parts too. Besides of being like very eye opening. There are parts that I was laughing out loud. You said a lot of like, phew, this was a lot, which I loved because it can be a lot for people who aren't familiar.
Emily: That's my ultimate goal. When it comes to talking about disability, I think there's such a divide between how disabled people talk about disability amongst ourselves and how non-disabled people perceive disability and how we talk to non-disabled people about what it's like to be disabled. And it's really challenging for us to meet each other where we're at. And I understand that when we have that dividing line, how do we bridge that gap? How do we actually start having meaningful conversation? And so my mom always said to me, when I was younger, that you catch more flies with honey than with vinegar. And I keep that in mind all the time, because I do get frustrated talking to people about disability and constantly being an educator. But I also just felt like it was time to make that overture extend that olive branch and say, Hey, I really do want to talk about this. I really do want to have these conversations and I want you to feel welcome to be a part of it. So I'm glad that that was the vibe that you got, because that was the vibe that I was going for.
Kelly: Well, it's a vibe that's very you. And I think it's a vibe that's very me too. I think I had always been talking about my personal experiences in relation to disability with my friends. My closest friend is someone that I've known since I was 10 years old. So she's always kind of been attuned to the differences in my life versus hers being a non-disabled woman. Um, but I think as I grew up, as I grew older, it was like, well, you know, as great as it is to kind of have these one-on-one conversations, it'll be so much better and so much easier for me in a lot of ways to express myself in a story that I can just hopefully link out to someone who has questions and that's happened a lot. But these last couple of years where I'm like, oh, you want to, you want to know what it's like to be friends with me? Let me send you that cup of Joe piece, I know Emily you were really helpful with, or like, Hey, you want to know what disabled motherhood is like, same Cup of Joe story that I wrote. I can send you that too. And it's just kind of been this, this really great way to get more people into the fold. And I know that you and I want to be able to do that in a way that's approachable. And I can say that I've really taken a lot of cues from you and how to do it in a way that feels authentic to who I am too.
Emily: And I think forming friendships, like the one that we have has also really helped me to kind of dig deep when I'm talking to people about disability. And that's because I know that when the going gets tough and when it feels really challenging to have these conversations, I have that safe space to come back to where I can talk to someone who just gets it. And that's the behind the scenes that I feel like doesn't come through all the time when we're talking about disability more publicly, that we end up creating these friendships. And often disability becomes the foundation and this shared experience because it's kind of hard to be a disabled person in the world sometimes.
Kelly: I mean, it can be very isolating. And I think that's what's so great about having these behind the scenes conversations. It's like when I, when I tell you something that's going on with me or something that I've experienced more often than not, you're going to be like, oh yeah, like me too, I've been there. Here's how I handled it. Or, you know, that sounds something that sounds like something similar that I've been through before. Just a little bit of, you know, that shared experience. I don't think there are a lot of outlets for disabled people to have that unless we seek it out. And then for me, once I've sought it out with you, um, it made it easier to have other friendships, like with Rebekah Taussig and Amani Aaron and, you know, just to be able to really discuss these things and a really authentic way has been really powerful, I think.
Emily: I think we need friendships with disabled people as disabled people so that we can then sort of have the strength to navigate enable as twirled. And I don't mean to say that in a downer kind of way, but I think it's a reality that it's not always smooth sailing to try to get people to understand what being disabled is like. And so if we can come to each other and have these conversations and be like, okay, here's how I handled this. How did you handle this? How would you handle this? That really helps.
Kelly: Yeah. I would say that, you know, being disabled and everyday life is a really vulnerable thing. We talked about in our previous CYG episode about how we're stared at that a lot and how we're approached a lot, but also talking about it publicly is its own separate vulnerability. Cause then you're opening yourself up to people's opinions and you know, people saying, well, you know, is that really true? Or, uh, that's, that's not what it's like for me. And the thing that I loved about your book is you're saying, you know, I'm only speaking from my personal experience, if this isn't how it's like for you, that's fine. Um, but you still were trying to be as inclusive as possible. Um, and I think for both of us, you know, the reason why we're doing all of this, the reason why we're back again, very, very gratefully is, you know, to continue to push the conversation forward. I think the beautiful thing about your book and the beautiful thing about there being so many different disability advocates out there is that there are so many ways to get a disability 101 perspective. And I think both of us are kind of waiting for the moment where we can say like, okay, now that you have the basics down, like let's, let's go deeper. Let's give you more of a perspective that we so far have only been able to talk about with each other.
Emily: That's also a scary thing though, because as much as I want people to move past the disability, 101, I think there's also this fear that I have of being continually more vulnerable with people, but also how do you educate people if you're not willing to cross that line of vulnerability? And I keep thinking about it in terms of the pandemic, because I think that that's really laid bare a lot of ableism, it’s really made all of the quiet parts of people's discomfort with disability that they didn't want to say become really, really loud. And so now I feel like I have to be even more vulnerable with people in order to get my point across. And that's kind of intimidating despite how out there I already am and how publicly I exist as a disabled woman.
Kelly: I know. And can we just say that you've existed publicly as a disability advocate since you were a child, since you were on Sesame Street, like you've been doing this for a very, very long time and yeah, I totally agree with you. I would say that being disabled right now, I'm in the midst of a very ongoing pandemic. It's this whole other layer of being vulnerable because like you said, people are really leaning into ableism, whether they realize it or not. Um, and I think, I think we have to break it down. Like, let's talk a little bit about what we mean by that. And I want you to, to start, because you're so good.
Emily: This is hard for me because I don't want to come across as being accusatory, but at the same time, I really feel like non-disabled people have just been telling themselves so much this whole pandemic we've made things more accessible for everybody, because we were forced to suddenly working from home became this reality for everybody or for so many people. And then disabled people we're over here like, we've been asking for this, we've been asking for you to provide accommodations like this. Where were you when we were asking, is it only good for you when it affects you, but not when it affects other human beings? You know? So there was that, I mean, there were people who I'm having I'm at, I'm going to get really real. Like I'm having a hard time talking about this because I've been talking about it for what 18 months now. And I honestly get a little emotional and kind of worked up about it.
Kelly: Well, here I'll, I'll take over a little bit too, because I also feel like it's, it's very hard because you feel like, here's my thinking is it's like the internet is a place where everyone to be informed and one way or another, like it for everything from like, how do I paint a wall, which is a good chunk of my career to reading about big topics. And I would say that at the beginning of the pandemic, when no one really knew what was going on, I was seeing so many disabled people online talking about like, okay, here's, here's, what's up. Like, here's how you stay home. Here's how you can build a career, remotely, I felt like there were so many disabled people who were being vulnerable for the sake of non-disabled people's comfort. And I just saw it being ignored or being dismissed. And that--
Emily: At the same time, disabled people were being completely, you know, thrown under the bus because while we were saying, Hey, we know how to cope. We know how to adapt. The healthcare field was rationing healthcare based on disability. And basically making determinations that someone who's disabled shouldn't be saved from COVID because of assumptions about disability and quality of life. And people were just deciding that other human lives didn't matter and they didn't need to wear masks. And then when vaccines came out, people were just deciding, oh, we don't need to get vaccinated. It doesn't really matter how it affects other people. And so I think it's all just kind of hitting me after talking about it for the umpteenth time that I'm tired.
Kelly: Yeah. It's well, and I can also just like picking piggybacking off of what you just said, you know, the way that people were just like, okay, it's only affecting the elderly and disabled people. We speak a lot about how the disabled identity is the only identity that crosses over so many others. And all of those people in nursing homes are there because they're disabled. And I just, I felt like there was such a disconnect about what disability actually is, who it affects the fact that it's one in four Americans, and there was such a, you know, callousness and how we as a community were treated and are still being treated. Um, and I think a lot of that comes down to two things. I think the first thing is just, unfortunately, a lot of ignorance. I feel like people don't know. And then the other sadder part is, you know, the people who don't care. I like to believe that most people are in the first camp of really not knowing and wanting to do better. And I think that's, you know, the most important part is, is talking to those people. And and I think, you know, I can just, I can say right now that when the pandemic started of course it was really scary, but I also was saying to myself, like, wait, this is a muscle that I haven't used in a really long time. Um, you know, I was born with cerebral palsy and as a kid, I had a few surgeries where my summer vacations were basically spent recuperating. So I knew what it felt like to be inside for a very long time, according to like a child three months and having to learn how to entertain myself and, and mainly how to keep myself from falling apart. So when the pandemic started, I honestly felt like I was so much more equipped than a lot of people to handle it and to kind of move through it in a way where I felt like I could still take care of myself. That's kind of the mentality that I'm picking up from a lot of disabled people. I would say that, you know, it was hard still, of course, but I think for a lot of us, it was also strangely familiar because I would say that part of being disabled is learning how to be really comfortable and a lot of ways with yourself to learn how to like, like yourself in a way that you can stand yourself. And also there is, there is an element of loneliness in disability because society isn't built for us and I think for a lot of non-disabled people to suddenly be forced to grapple with themselves. And also with that element of loneliness, that that's, that was almost unbearable.
Emily: It's a muscle that I definitely have had to flex at different times in my life. I missed the entirety of the second half of my senior year of high school, because I was recovering from major spinal surgery. That was pretty much a life or death situation. And then just this past summer, I had an accident and I fell and broke my leg and I ended up spending most of the summer recovering from surgery to fix that. And so, yeah, I think existing in a disabled body means that a lot of the feelings that the pandemic brought out for everybody are things that we're already familiar with because we have to be, but I don't want people to feel pity. That's not what I'm looking for. And I always worry about that when we have these conversations. My hope is that people will start to ground themselves in an understanding of disability, will start to actually take in the disability 101 that is out there and understand that when we talk about our experiences, it's not about tragedy. It's just about recognizing that there are multiple ways to exist and multiple ways to survive.
Kelly: Yeah. I'm really glad you said that. Cause I think that's, that's what we're trying to get at. We want to be able to share, you know, the flip side of what we're, what we've experienced and also to say that, you know, we are the experts of our experience. I think that, um, when it comes to disability, uh, we can often be spoken for, or we can often be told like, oh yeah, yeah, I get it, like, I know, I know what that's like, and I don't think that that's true. I think it takes a lot of conversation, um, to really get what it's like to exist in a disabled body. And I think, again, going back to your book, just because it's so good,
Emily: I swear I didn't pay her to do this.
Kelly: I know, I know I can't help but be Kris Jenner, I just love you so much. I, um, I have to mention it. I think the thing that was great about your book, where I was like, oh, I hope I hope people really remember. This is you, you broke down April as, um, as something that's like very much in your face, but also something that's really insidious. I think that's the word you used. And so like the ableism in your face is like using, you know, really derogatory words or not being able to get into a building, all of that stuff. That's very obvious. Um, but also there's the insidiousness of like, okay, well they can just stay home, right? Like I still want to go out to the bar. They can just stay home and not really examining why it is you feel that way or, um, how that would feel if it were you. And I think the thing that I really took away from the pandemic, even though it's ongoing, it's just that to be disabled is to really understand that like your body doesn't fully belong to you. And like, give me a minute because I know that I'm going to say that people are going to be like, what? But, um, I think as a disabled person, you're just kind of like, okay, here's where I am right now. Um, that can change. And I also know that like circumstances and nature have, have a say and what happens to my body. And I think for a lot of disabled people, there's this sort of like strange comfort in that also knowing like that's really hard, but there's a comfort in knowing like, okay, it isn't just, this, isn't all just mine to kind of control. And that's why I think that we were better prepared than a lot of non-disabled people.
Emily: What comes up from you? And you say that has a lot to do with my mind and my body are not static. And I have always understood that. But even so this past summer, when my physical abilities temporarily changed during my injury, I also found myself struggling to be in my own body in ways that I wasn't used to. And that almost gave me insight in a way to what it must be like to be non-disabled and have new circumstances. So abruptly put onto your body and new limitations, so abruptly, but onto your body. And so understanding that we don't live in a world that prepares you to become disabled, even though the disability community is literally the only community that you can join at any time. And that's not a threat. Like, honestly, I think we're kind of cool. I wouldn't mind if you joined us, but people are afraid to become part of the disability community. And that's because we're not having real open and honest conversations about the disability. And I guess, so this is challenging for me because you and I talk all the time about wishing that people would just get past the 101. But I think that until enough people internalize the basics of disability, that we can then start having these more complex and nuanced conversations about what it's like. We're not really going to get very far, but then there's the flip side of that, which I've been grappling with a lot lately, because many people are ready to keep learning, but it's like, how much of myself and my story do I owe to somebody in order to change the world? And I don't mean like, oh, I'm going to change the world. That's not really what I'm saying here, but like how much do you disabled people owe of ourselves in order to get to the world that we hope for?
Kelly: Yeah. You mean like how do we get the world to go from like a first date to a second date? [laughter]
Emily: Honestly yeah.
Kelly: Like, how do we get, how do we get a little deeper into this conversation? I want to get to know you more.
Emily: I know I'm talking like maybe six months in, I'd like to be at this point, like, let's hurry up here.
Kelly: That's how I feel. I mean, honest to goodness. There's just so much out there, like Judy Heumann has been talking about this for like 50 years and then we ended up giving the Oscar to an octopus, but there's just so much, there's just a lot of info out there. And I think, you know what you're saying, taking people deeper does require them to, to be equally vulnerable. Like if we're, if we're being asked to be vulnerable all the time, then you, you would hope that the non-disabled person who is asking these questions would also say like, okay, well, if you're going to tell me what your role is like, then I am going to do my best to listen. And to also, um, examine the holes I might have in my knowledge. And I think that that takes a lot of work too especially like you said, because there isn't a lot of encouragement to learn about it in terms of how society is built and functions. I think a lot of people got a crash course, those who were able to work from home and, you know, those who quarantined and practiced social distancing. I think they were able to kind of get at least an idea of, you know, how their life has changed. But then take that a step further and be like, okay, I, and I kind of think we're having that conversation now. It's like, where's the world gonna be when this is over? How do we want to take the lessons that we've learned in this pandemic, um, to make a more inclusive society. Um, and I would hope that disabled people would be a big part of that conversation because I think again, everyone has kind of realized, oh, my life can change in an instant and no one understands it more than a disabled person having this conversation where we are able to get deeper. It really starts from a shared vulnerability. Um, it starts from the understanding that like, Hey, I'm here to learn. I'm here to listen. I'm not here to be defensive and I also need to understand that, like this isn't a one and done conversation. My oldest friend, we've known each other since I was 10 years old. And we're still having conversations where she's still learning, you know, disability is an identity. It's something that is ever evolving just like anyone else. And so that conversation can continue for as long, as long as possible.
Emily: Yeah. Some of the best friendships that I have with non-disabled people are really rooted in the fact that they're willing to communicate about my experience without making my experience. The only thing we communicate about, if that makes sense. So it's not like, Hey, I'm going to go out of my way to talk about disability with you. It's more like, Hey, let's have this conversation because it feels relevant in this moment, and I have questions for you, and I want to listen, and I want to learn, and then I want to take what you told me, and actually apply it to being a better friend. And I feel like that's how my friendships have lasted throughout the years is that as I've evolved in an understanding of myself and who I am and my identity, a lot of my friendships, especially with non-disabled people, they've grown with me in that. And they've seen that I leaned into my disability as this big important part of who I am. And they're like, I see that I respect that. I don't fully understand it, but I'm going to do my best. And you know, they never make me feel like I owe parts of myself to them. It doesn't feel like that. It always feels to me like they want to talk to me about disability because they understand it as something that's important to me. And it's something that affects how I see the world and how the world sees me. And so that's the kind of conversations that I wish we would be getting to more broadly. I recognize that it's a little odd for me to be saying this when I am someone who literally wrote a book that was intended to be 101. But the thing that I hope I got across is that you can read one book, you can talk to one person you're not going to suddenly have all the answers about disability. I mean, this is the same for any identity. One person does not define that experience. And I think that for too long, people have been like, oh yeah, I read one book. So like, I can wash my hands with this now because I totally get it. Or like I had one conversation with a disabled person. So I am super aware. I'm like ally of the year. Like, no, you're not.
Kelly: Yeah. I totally agree with you. I would say that my non-disabled friends, especially since I started writing and talking so openly about my disability have met me there. And I would say recently, if, you know, if there are people who are listening that are like, well, what do you actually mean? Like, give me some examples about how I can do this. So a friend of mine had her birthday party last month at the beach. And, um, she sent out invitations and then to me, she screenshotted photos of Google maps and then like literally drew on the map. Like here's where you should park. Here's how far it is from where we are. Do you think you can do that? Or which do you like for me to come and meet you and get you to where we're going to be? And I, you know, that was totally unprompted. Um, and it was just such a freeing experience because it was like, oh, she gets it. Um, and it makes it easier to open myself up more to her. And also when it comes to having these conversations, ultimately what happens is we feel seen and heard and I think there is nothing better and any relationship, um, nothing healthier than being seen and heard mutually. Um, so it was such a small thing for her to do, but it really meant so much.
Emily: This makes me think a lot about navigating access with my boyfriend who is not physically disabled. And he's really become over the last four years now at this point of our relationship, very attuned to accessibility, to the point where he'll check out situations for me when he's planning something and I don't have to prompt it. So we were planning on going to a comedy show, for example, and he went to the venue and scoped it out to make sure that there were no steps to get in. He took a look at the layout so that he could find the most accessible table for us to sit at. He, you know, picked the table based on how I would feel and if I would be most comfortable with my wheelchair. And it seems like a small thing. And it seems like something that you would just do for your partner or for your friend or for a family member or someone you care about, but it makes a huge difference. And you know, he doesn't always understand my experiences, but he understands how he can be supportive of those experiences. Because like another time I think it was Valentine's day, like two years ago and he got me this little hot wheels wheelchair. Have you ever seen them? They're so cute.
Kelly: Oh, no, I haven't.
Emily: Oh my God, they are adorable, tiny little hot wheels wheelchairs. And he said, I got you this because I want you to know that I see you and I want you to feel seen, oh, that's so nice. It was, and I cried in the middle of a taco joint.
Kelly: [laughter] mmm tacos.
Emily: The important part of this story. But like, I think the reason that I bring both of these examples is because he was never saying I understand what it's like to be you. He was saying, I understand the role that I can play in supporting you in this world. And that's such a valuable thing. I don't need these brand gestures, right? Like I don't need you to, you know, try to earn ally of the year. That's not what I'm looking for. It's those little in-between spaces and quiet moments where you just do something for someone that you care about and you don't make a big deal out of it. That's, that's what I want to get to
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Kelly: My friend who did the Google maps, um, photos. She said, you know, do you need me or not? And so there's also this feeling of like, oh, she understands I can take care of myself, but she also knows that like, I might need her help and she's just putting it out there. That's what we're both saying. Right? It's like, you want Eli to support you like a boyfriend would, a good boyfriend would, but also, but also, you know, see this part of you that a lot of people have a hard time seeing. And it sounds like he's doing that, which is great.
Emily: And I don't want to have to apologize for it either. That's the other thing, there's something to be said for people who recognize the ways that they can support you as a disabled person. And I don't feel like I need to say sorry for it at the end of the day, because existing in a disabled body also means just sometimes feeling like you have the word burden stamped on your head. I don't know if you feel the same way. I don't want to speak for you.
Kelly: No yeah, I definitely have experienced that. And I think, um, I think that's, again, just one of the misconceptions about disability and one of the things that's very easily internalized. Um, so when someone that you're close to is like, no, you're not a burden to me, like, I'm happy to do this for you as part of my relationship with you. And I'm also seeing that, like you are more than, than these accommodations. I actually want to spend time with you. I'm happy to spend time with you and I'm not keeping score about the things that I'm doing for you, um, that I don't have to do for someone without a disability, that's also part of being a burden. It's like you feel it. And then when someone does something for you and then turns around and says, like, see what I did for you. You're like, oh, well now I feel like a burden again. Thank you. Um,
Emily: Yeah, it's like this cycle of feeling like you're just a burden to everybody. And I mean, I still feel like a burden all the time, despite the fact that I literally would tell any other person not to feel like a burden like this past summer, you know, dealing with my injuries. I was constantly apologizing for myself, despite the fact that I literally had a book coming out about being an unapologetic, disabled person. And so, you know, I'd been like privately dealing with the hypocrisy of that and I still haven't really reconciled it. But the truth is that as much as I educated about disability and as much as I talk about disability as an identity, a culture, a community, like we have a history, I still have an incredibly hard time, not internalizing ableism and not feeling bad about myself because I'm disabled just because I'm still surrounded by like, and pummeled by all these messages that I'm not worth as much as a non-disabled human being.
Kelly: Yeah. I hear you. I mean, I think, I think the conversations that we had a lot, you and I this summer is just acknowledging that being a disabled person is complicated. You know, the way that I think about my body is almost like the way someone would think about a sibling where it's like, where it's like, I love my body so much. I would defend it so much, but at the same time, like I'm going to make fun of it. And if anybody, or I'm going to have issues with it that I don't particularly like, but if anybody were to voice those same grievances, like I would kick their butt.
Emily: I love that analogy, it’s perfect.
That's, you know, it's, it's hard to, to again, be in a body that the world is telling you isn't. And I think part of, part of the joy of being disabled is saying like, well, screw you world. I'm going to do what I want. And I'm not saying that that comes easily or that it's consistent. I'm saying that that comes in waves and having the summer that you had, which was filled with, you know, so many lows and also so many highs is really just an example of what it's like to be disabled honestly. And what it's like to be human.
Emily: I'm so glad you said that because I think there's still this us versus them mentality where it's like, well, I totally don't relate to disabled people. I do not get it. And that could never be me, but no, bodies change, minds change. And I think if we understood better the ebb and flow of what it means to be a human being, I think we would all have a better time of meeting each other where we're at. And I think that disabled people would have an easier time accepting ourselves and not constantly beating ourselves up for the very things that we're fighting against, because you're absolutely right. If someone picked on someone I cared about in the same way that I honestly abused myself when it comes to my disability, I would be livid, absolutely livid, but I'm the first person to say something mean about myself and my disability. And this is not something that's easy for me to admit because I definitely put forth, I think, a particular image of myself online. And I don't say it as like, oh, I'm a brand. You know, I say this, like, I think about what I post very carefully. So people don't always get that behind the scenes, look at how I'm really feeling.
Kelly: Well. I love you. And I know that's not what you were fishing for, but yeah, I, I see you. And I definitely think that that it's, it's hard and just acknowledging that hardness without being like, oh, I'm I'm I think when, when disabled people say like, Hey, being in this body is hard, it's hard for a non-disabled person to know how to respond, because I think the first response is like, oh, I'm sorry. Or like, yeah, I know it must be. And all of that feels really, really yucky for both people. And I think, I think a lot of this is just listening and nodding and being like, okay, tell me more. I think that's all that we're all that we're looking for is to just be like heard.
Emily: Yeah. Clean always ask me, they're like, how do you even want me to respond to this? I don't need you to give me some long drawn out answer. I don't necessarily need you to say, oh, well I get it because my mother's uncle’s cousin’s dog has been through this really hard experience. You know, that's now where I really value it when someone is like, I hear you, thank you for telling me that.
Kelly: Oh my gosh, that's the perfect response. And that's really all we need. Because again, we know the ebb and flow of bodies. We understand that when there's a low, there's going to be a high soon. It's just being in the low that's hard and would be hard for anyone. And it's nice for someone that we tell that to, to respond with, like, okay yeah, I can see why that would be hard.
Emily: I think you have an experience that you feel like you want to relate to. I am open to that. I don't know if that's a popular opinion, but I do think that we learn more by trying to relate to each other, but I think it's a matter of doing it in a way that's respectful and not like trying to one up someone or downplay what they're saying, but just saying like, so maybe I don't understand in exactly the way that you're talking about, but here's something similar that I want to share with you. And I'm totally open to those kinds of exchanges, as long as it's not like I'm telling you that I experience chronic pain every day, or I'm telling you that I felt a certain way because, um, you know, someone made a derogatory comment about my disability and then you come back with like, oh yeah. you know, my neck hurts sometimes. You know? And I mean…
Kelly: Yeah, I know what you mean. I think it's human nature to want to connect. So, you know, if I tell someone, um, you know, my leg hurts, there'll be like, I broke my leg once and I'll be like, cool. And, and yeah, I, I don't fault people for that. I know, I know you don't either. Um, but I think like we've been talking about this whole time, there's such a disconnect with how to relate to and respond to disability. Um, when really like the response is super simple. It's just like, oh, okay, you feel that way, like, do you want to tell me more? Do you feel comfortable with me sharing more about myself? Maybe it's not similar, but that's how that's how people connect and I think a lot of the time when people think about disability, like we've talked about, it's just such a giant disconnect. And I will say, I'm always surprised by the people who may not seem like they can connect and then do connect. Um, because, you know, if we, if we want to talk about this, I'm working with a trainer right now. And I am just like, so unbelievably surprised by how’s he's been able to really connect with me on how my body is moving without wanting to fix me without wanting to leave me if anything, like I am leading our training sessions. And it's just so, um, it's just so exciting to me because, you know, I wasn't expecting that.
Emily: There's an open-mindedness that I really appreciate where people aren't looking to place their preconceived notions about disability on you. And I think to be totally fair, we cannot blame non-disabled people for much of their perceptions about disability, because we're socialized to think that way. I mean, just look at how the media portrays disability on any given day. And you're probably gonna see some story about how it was really inspiring that a student with down syndrome graduated high school. And then you're probably gonna see a really sad story about someone who became paralyzed in an accident. And then you'll probably see an advertisement for a charity to support sick and disabled people. And that's so common. These are the narratives that were fed that were inspiring simply for existing. Like everybody else that were a tragedy because we exist in disabled minds and bodies, or that we need you to fix us and we need your help. And then on top of that, we're living in a world where our systems are designed to be inaccessible. And so of course, an equitable existence for disabled people is not going to be at top of mind for non-disabled people, because that's not the world we live in, but non-disabled people can certainly play a role in dismantling these misconceptions and these ableist structures. I mean, I know I'm like on a soapbox now, but...
Kelly: Get on that soapbox, get on there.
Emily: The soapbox has a ramp by the way, it's an accessible soapbox, but I'm glad it all this is to say, I'm not out here, like actively holding it against non-disabled people. I don't want people listening to this episode and being like they're bitter, and I'm not even going to try because I don't feel like I'm going to get it right. So what's the point. It's like, no, I actually want you to have these conversations to make mistakes, to be vulnerable in the same way that we're being vulnerable. And just to recognize that, you know, this is some of the most human stuff in the world, this is as real as it gets.
Kelly: Yeah. If anything, I think, I think we're here because we ultimately believe in people. Um, and you know, I'll speak for myself on this. I am an eternal optimist. I think that more people than not want to be able to do the right thing, um, and want to be able to learn, um, which is why we're both here and why you also, you know, wrote your book because you, and I think that, um, this is something people want to, to listen to. And, you know, on top of that, uh, I think it's important to also note that there are little things everyone can do to be more inclusive. Um, you know, it really starts with language. I think that that's not the easiest, but definitely like the first ring rung on the ladder ring on the latter?
Emily: Rung [laughter]
Kelly: First rung on the ladder, um, is to really think about, you know, the words that you're using to describe disability. We’ve talked about before on the previous episode, you know, how often we hear the words inspired and given those new stories that you just talked about are pretty prevalent. They're always using words like, oh, that's so inspiring or, oh, he's so determined. And I think that those descriptions, not only are they condescending, but they also strip that person of being anything other than inspiring or determined. You know, when you think about someone who's determined, what did they have to do in order to get that adjective?
Emily: And why did they have to do it? Yeah. I mean, reflect on that, like ask yourself if you're so inspired, what are you doing with that inspired feeling and why are you inspired? Is it because someone literally overcame an ableist world? Probably.
Kelly: Yeah, probably. And then, you know, we're talking about ultimately seeing people, seeing disabled people as whole people, people who have full lives, who have exciting relationships, who have careers, who have everything, um, that, that non-disabled people have. And by having language that's more inclusive, you're signaling to yourself and you're signaling to disabled people like, Hey, I'm acknowledging that. And there's so much that's lost when disabled people can't live their lives out loud. Like there's just so much that society is missing out on when we can't be our full selves. And I'm not just talking, getting together for a coffee. I'm also talking like big picture. We can contribute to society in a way that I don't think we're given enough credit for and in order to get to those steps, that bigger picture, it has to start with seeing us as more than just inspiration, as more than just determined.
Emily: And I always like to challenge people, and this is where I think it gets even harder for people to wrap their minds around, but I challenge the traditional or typical definitions of what a full life looks like. Because in so many ways, we have these arbitrary standards for what it means to live a full life. And we assume that you have to be physically active or in a romantic relationship or working a full-time job or have a certain level of education. We just have all of these assumptions about what it means for a life to be full and for a life to have value. And I think we need to start letting go of some of these assumptions and recognize that what a person does, does not define their worth as a human being. I mean, it's a challenge. I feel like there's kind of a scale that I'm trying to balance here where on the one hand, I want people to understand that disabled people absolutely can, you know, get married or get an education or hold down a job or be a world traveler or whatever the case may be. But at the same time, I don't want to go so far as to say that these are the things that define the worth of a human being. I just want you to look at each human being and say, your life is valuable because you are living it however you are living it and I respect that.
Kelly: I love that.That's great. That's entirely how I feel too. Yeah.
Emily: Yeah. I just, I don't want people to question our humanity.
Kelly: I know. It's so simple. Um, but it does take a level of grace. And I also would say that nobody likes the pressure of having to hit certain milestones in order to be deemed worthy. I think especially after this year, everyone's doing or seems to be doing a lot of reevaluating, um, in terms of where they want to go. So I think a lot of that includes not only where you personally want to go, but who you want to take with you.
Emily: That is such a good point. And recognizing that it's not a linear process, nobody's lives are linear. It can be very messy. We can make mistakes along the way, but as long as we're making an active effort to meet each other where we're at and to really stop and sit and listen and learn, that's all I can ask for. That's what I want. Yeah. But I hope you'll get out of this conversation that we just had.
Kelly: And also I should say too, that I'm a physically disabled woman. I'm also learning what it's like to have their disabilities
Emily: A hundred percent. I really hope that people don't just listen to this episode and say, oh yeah, I kind of get it. I actually hope that this episode leads to more questions than answers because I want people to start pushing themselves to keep their learning process going. I also never want to act as though I'm the one stop shop for everything related to disability. And that's even with having written my book, my biggest caveat about the book is that I'm one human being and it's one book. And I really hope that people aren't just going to stop there or stop here after listening. I hope that you're ready to keep learning. That's even if you have a disability, like Kelly was saying, we're not absolved of learning about other experiences, just because we're marginalized ourselves.
Kelly: For me, learning to like grow into my voice more and more to speak out about my disabled experiences. It really started with reading before I met you and met others. So if, if that's where you're at, just meet yourself where you're at.
Emily: I couldn’t have said it better myself. Meet yourself where you're at.
[interview ends]
Ann: Aren't they the best, honestly, like I loved listening in, on their conversations so much. And I wanted to share one final thought from Kelly that she texted me after they were done recording, because I think it's so beautiful. And I just like, it's such a great thought to, to end on here.
Kelly writes, it feels like there's a lack of imagination around what a body can be for better or worse. Society is super comfortable talking about a body's strength and resilience, but isn't so comfortable talking about its fragility. I think to be disabled is to be intimately aware of a body's fragility, but also learn how strength is inextricably tied to that. If you can learn to live with fragility, not as this looming cloud, but as a natural part of life, it almost feels like life is easier. The pressure is off to always be a certain definition of strong. And when I see people not wear masks and not get vaccinated, it seems like they haven't learned about the power of fragility. Fragility can also be fluidity.
Oh, I love that so much. Um, deep, deep, thank you to Emily Ladau and Kelly Dawson. In the show notes, you can find links to their websites and to Emily's new book, Demystifying Disability, um, plus some of those Cup of Joe articles that Kelly mentioned. And I'll see you on the internet.
[outro music]
Aminatou: You can find us many places on the Internet: callyourgirlfriend.com, Apple Podcasts, Spotify, Stitcher, we're on all your favorite platforms. Subscribe, rate, review, you know the drill. You can call us back. You can leave a voicemail at 714-681-2943. That's 714-681-CYGF. You can email us at callyrgf@gmail.com. Our theme song is by Robyn, original music composed by Carolyn Pennypacker Riggs. Our logos are by Kenesha Sneed. We're on Instagram and Twitter at @callyrgf. Our producer is Jordan Bailey and this podcast is produced by Gina Delvac.