Episodes
EP008 → Disability Pride Month: Live from Soho House with Kendall Ciesemier
In this episode, we talk to Kendall Ciesemier, a writer, producer, reporter, and health and disability advocate. Nora celebrated the launch event of So, Life Wants You Dead during Disability Pride Month last July when we recorded this conversation. We're so excited to launch our second season with this conversation.
Kendall discusses her experience with liver transplant, navigating disability disclosure, and the societal stigmas associated with the term 'disability.' Both Nora and Kendall share personal stories about their health experiences, the empowerment found in disability identity, and the importance of community engagement. We touch on the challenges of navigating systemic ableism, the value of visibility, and the need for deeper cultural understanding and legislative change to support disabled individuals.
TRANSCRIPT
[00:00:00] This is So Life Wants You Dead, a show that explores the intersection of illness, disability, healing, and creativity. I had an emergency organ transplant in 2015, and despite the drama of the situation, it turned out that near death was fertile ground for my creative life. Now, All these years later, I can say that was what saved me, that and a brand new liver.
I'm Nora Logan, and this is a podcast on how looking at death helps you live. Today, my guest is Kendall C. Smyre, writer, producer, reporter, and fellow liver transplant recipient. We recorded this episode live and in person at the end of July in 2023 to celebrate Disability Pride Month. A year on. Another Disability Pride Month is coming to a close, and I couldn't think of a better way to kick off our second season than with [00:01:00] this conversation.
We talk about disability disclosure, Kendall's advocacy work, mental health, and finding empowerment through community. Here's the conversation. I'm so excited to be here with you tonight. If you're not familiar with my podcast, I launched it at the end of last year in collaboration with Soho House, our gracious host for the evening.
And we never actually got to have a launch event. This is it, which is really exciting. And I couldn't think of a better way. to celebrate it than in the midst of disability pride month, which is this month, July. It just feels really good to be here in a room with people after having put out these seven episodes and get to celebrate with you.
Before I go any further, I'd like to give you a visual description of myself. I have Black [00:02:00] curly hair, which is a bit frizzy from the humidity in New York today. I'm about 5'6 and I'm sitting down wearing a pink silk dress and black shoes. And now I'd like to introduce you to our guest for the evening, Kendall C.
Smyre. Kendall is a writer, producer, and reporter. Currently, she is the host of the ACLU podcast, At Liberty, and the senior executive producer of Multimedia. Kendall is also the creator and host of United Bodies, a forthcoming podcast on the lived experience of health from Ms. Magazine. She's a sought after health and disability advocate and writer with opinion essays in the New York Times, CNN, and more.
I would urge you to check out her op ed from the beginning of this year about the late Tanya Ingram and the organ donor system. Tanya was a friend of our show and also to Kendall. And she was on the list for a kidney transplant. And it's a [00:03:00] brilliant article. Kendall's opinion journalism has moved both the Biden and Trump administrations to make notable changes to the organ transplant distribution system, including moving to break the national organ monopoly.
Her work to advocate for health justice, beginning with a nonprofit she started as a child and continuing throughout her career in journalism has been recognized by Oprah. President Clinton, The Today Show, CBS Mornings, Glamour Magazine, and Google, among others. Kendall is also a liver transplant recipient.
Woo woo! Which is nuts for both of us. Because you don't mean Totally nuts. And I just want to thank you for being here tonight. We're thrilled to have you. And can you start by also giving a visual description of yourself, please? Absolutely. First off, I just want to say thank you, Nora, for inviting me to this.
It's very exciting. My name is Kendall C. Smeyer. I am a white woman with blonde hair. I am wearing a [00:04:00] long black dress that has like very teeny tiny straps, but it goes down to my. ankles and I'm wearing some Adidas tennis shoes that are white and black and I'm just so honored to be here. As a transplant recipient you meet a lot of, we were just talking before this started, the kidneys get a lot of shine, the hearts and the lungs, they're very artistic organs so you can do a lot with them.
Merch wise, livers. Not so much, not really, there's not much out there. Yeah. I thought about it at length actually, in making the artwork for the show. There's nothing cute you can do with a liver. Our scars are pretty sick. They're cool. I mean, that's what I ended up doing. Yeah. That's why my naked torso is on the artwork.
Um, you know what? I love that. Tonight's conversation is about navigating disability disclosure and visibility for disabled people in general. And so I [00:05:00] thought we could open with a working definition of disclosure as it relates to our own experiences of navigating it for ourselves. So I invite you to start.
Sure. Yeah. So I was born with the liver disease. And so always disability has always been part of my life experience. I would not have ever seen that way until probably I think began to start thinking about disability as an identity during college, and then even probably still felt a lot of shame towards identifying openly in that way, and also didn't really feel like, like maybe I, did I count?
Was I part of that community? I knew that. Illness had really impacted my life and still was impacting my life, but it didn't, it wasn't as clear a construct to me at the time. And it wasn't really until I saw a box on a job [00:06:00] application. Do you have or have you had a disability? Check, yes or no. And then followed by a list of conditions.
Cancer, asthma, PTSD, depression, heart conditions, uh, and multiple sclerosis. There was just this ongoing list and I was like, yeah, I fit in that list. But then I had this overwhelming feeling like, oh no. If I don't check yes, then am I denying my life experience? But if I do check yes, what is this going to be used for?
Because I had always grown up being told by doctors to never tell anyone about any of it until after I was hired due to the concern of discrimination. And so that was in the back of my head as well. Oh, if I check this box, is this going to make me less likely to get a job, if you [00:07:00] will. I ended up checking yes, because to me, denying the lived experience that I had felt worse than potentially not having some repercussion and not getting a job.
But it definitely also became easier for me to step into that identity and to openly identify myself as having a disability. As I have. gotten older and also aligned it more with a political strategy or movement for myself. If I'm someone who moves through the world in a lot of ways with a lot of privilege, people can't necessarily perceive unless I'm in a bathing suit, but there's anything that could be different, right?
And I don't get clocked as having a disability. I think in a lot of ways, that's like, I think that it makes, you have to choose it for yourself, right? If you have an invisible disability, unless you're seeking [00:08:00] accommodations in very specific circumstances like I had done through my K through 12 education experience, I didn't have to tell people, which again is a privilege.
But to me it was like, Oh, if I actually want to create a movement and I believe in disability rights and I believe in. Using my personal privilege and power to create opportunity for more people than what the disability rights movement needs is people power, like it's the slowest moving rights movement in the country and in the country's history.
Simply because I think there are, I think it's because that there is a lot of shame and stigma attached to identifying as having a disability because people either think, oh, it doesn't count or it's not enough or, oh, I don't want to be associated with that. But for me, it ended up feeling like I could make a choice that felt in line with who I was and [00:09:00] what my lived experience was denouncing a lot of the shame I had as a child.
And also, it could be a political strategy, which felt good as someone who was interested in social justice movements. Yeah. For me, I'm so happy you mentioned the bikini because I came to my disability differently than you, although we had the same surgery, obviously. And we're both transplant recipients.
I was 28 when it happened. And that shame and guilt that you mentioned was so present for the, at least the first five years after my transplant, I remember at the beginning, I was like, Oh my God, I have to buy all these one pieces. Shit. I did. And I was like, it speaks to our. illness around body image, but I was extremely skinny and I was like, Oh my God, I'm like a size zero.
This is crazy. And so I got these, all these one pieces and I felt nervous that anyone would look at [00:10:00] me with the scar for a long time. And so for years I only wore one pieces and it's only in the past five years that I've also started saying that I'm disabled and I've Since started wearing bikinis, which is great.
I feel good about both those things. That was the thing that tortured my childhood, though. Yeah. The bikini. I definitely was a one piece wearer. Still mostly am. Because I, my scars are a plenty and I don't want to get them. It's like my whole rest of my body is tan and my stomach is fluorescent white.
It's never seen the sunlight. So I'm a little worried about getting it burned. And also the, and being in the sun in general. Yeah. Did attend a wedding where, wearing something that showed my skin. waistline and I used self tanner on it because it was like literally fluorescent. But [00:11:00] yeah, I resonate with the bikini debacle.
Yeah. And it's interesting because I never even really thought about it in terms of disclosure, but it's, it's a way that I disclose to the world and people who don't know me. And I feel a type of way about it when I'm with people I don't necessarily know very well. Ultimately, for me, with disclosing my disability, and even using that word, it's been A source of empowerment in the long run.
And I feel so grateful that I was able to come to that conclusion stance. And for me, it was so much of then deciding to create this podcast and tell these stories. And I'm curious, like you said, at the end of the day, choosing to identify as having a disability is a choice. And I'm curious to know what are some of the ways that you feel empowered by By making that choice.
Yeah, I definitely think we should be clear that disability is a [00:12:00] dynamic experience and sometimes it can be a static experience. Sometimes you acquire a disability or were born with one, and that will be something that exists throughout your life. Other people. Could weave in and out of disability within their life.
Sometimes the world meets you as having a disability because it's visible. And sometimes the world doesn't meet you as having a disability because it's invisible. I do think it is an identity category that you get to choose for yourself. And I know plenty of my friends who have visible disabilities have even expressed to me, I.
actually didn't identify as having a disability, even though everyone was receiving me as having one, which I think is really interesting and a good experience that someone else on the podcast should talk about. Whether or not we choose to identify, the world will meet some of us in ways As having a disability, so I just wanted to be clear about sometimes I think it's a [00:13:00] choice that you can personally make, but you don't always get to choose how the world is receiving you, and ableism isn't the air we breathe and water we drink.
The way in which I feel like stepping into the identity has been empowering. There was just so much in my life that I never talked about. Like ever. And I didn't realize that I never talked about it until I started talking about it. And I slowly just started dipping my toe into that water, sharing a little bit about my experience, a little bit with friends or with coworkers or in stories.
Or I just knew that there was a huge part of my life that I just wasn't Acknowledging or sharing. And I really felt quite lonely in it. And I think one of the most empowering pieces to me about this is the community also [00:14:00] opened up a community to me of people that. While we all have different experiences and the disability community is very broad and everyone has very unique experiences and we are not reflective of everyone's experience for sure.
I just think it's been so powerful to be alongside those folks and to be able to talk about my experiences with people who understand them or have similar experiences. And then also to be able to tap into the personal experiences that I have had that can actually move. I can do something about, right?
I think I find a lot of power in while I can't control my own situation and have felt powerless in many times, I find power in trying to be powerful for other people. We can't control what happens to us, but we can control what we get involved in for other people and other people's lives. And I feel to me, That has always been a core thread, even before I [00:15:00] knew to identify myself as having a disability.
Um, the non profit work that I did as a kid that I fell into was also, it was around the AIDS epidemic. Um, another kind of health justice issue. And Can you tell us a bit about that? You were 13. I was 11. So, yeah. And I very much felt, it's a very long story, so I won't get too much into it. But I had been inspired by an Oprah show and I was like 11 watching this Christmas special and she was, Oprah was in South Africa, held a Christmas party and then showed some of the homes that the kids were living in who attended the Christmas party.
And there was this one 13 year old girl named Candy Seil, who was. Living with, both of her parents had died of AIDS, and she was taking care of her younger brother and sister, um, by herself, no running water, no electricity, and I was like, Absolutely not. Like, how is this even, what are we doing about this?
Why are we not doing something? [00:16:00] And so, I really, very much held on to this thing that they said on the show, which was that 10 could buy a uniform for a kid to go to school, and I was like, I have 10, and all of my friends have 10, so I don't, we can fix this. Seems pretty easy. And I think the audaciousness of a young person is amazing.
I don't know if I have that same audaciousness now, but it grew to be a 501c3 that I ran until I graduated from college. Mission was twofold. First to inspire and empower young people across the country. To become a generation of givers through the mechanism of raising money and helping provide basic human needs for children who were impacted by the AIDS epidemic, specifically in four countries in Sub Saharan Africa.
And we partnered with community organizations on the ground and built things like high schools. And it was a really powerful experience because I think for me. What it taught me was that I didn't have to be the cool kid or the pretty kid or the athletic kid. I could be actually the sick [00:17:00] person and I could still be incredibly powerful.
And so I think that thread is something that now That was, in a lot of ways, when I was entirely trying to disavow disability in my life, I was like, don't look here. I'm not the sick kid. I'm the kid who is helping other people. I think now that I can integrate that, what I knew about harnessing, you know, your personal power for other people with the identity of disability, I feel like that is how I have applied disability.
That is what I have sought to do in the work I do today. And I feel like that's a really, it's a very clear legacy story of how you've come to the advocacy work that you do now, the health justice work that you do now. Just get really pissed about something. Then I try to see if I can find an angle, find someone who's going to let me yell about it or something.
I really identify with [00:18:00] that because I think the community aspect that you were talking about before. I was so lonely at the beginning. To be young and to be disabled is a very alienating experience. And to be a liver transplant recipient where you look around at the support groups and it's 65. I never joined a support group.
That was smart. But for me, in reading disability stories and, and learning more about the disabled community over these past, coming up on my eighth anniversary, I read so much about. Very exciting. I'm coming up on my 19th. Oh my gosh. Wow. We're an adult now. Yeah, that's like. The community aspect for me is so important.
There's a loneliness that is a thread for so many people. And then when you click into community, it's, Oh no, my, my, my. experience isn't singular. We may have very different actual details, but it isn't singular. First off, human suffering [00:19:00] isn't singular. So there's that. But yeah, disability is everywhere.
And I actually think that far more people would benefit from identifying with disability than do identify with disability. There's a variety of conditions that could be considered a disability depending on how it is lived in your body. Depend, depending on how you feel about it, but disability is literally everywhere.
We also just experienced a mass disabling event being COVID. And I definitely feel like I wish that we could get beyond the stigma. of disability because I do think that so many people would benefit from things like advocating for universal design. Things that genuinely help all different kinds of people, even if they aren't identifying with disability.
And I think really the movement [00:20:00] needs people power to get there. Yeah, I think something that's important for us to touch on, though, is that a lot of people are really uncomfortable with the word disability. Yeah. Can you speak a little bit to that? Because it's a loaded word and there's stigma around it.
And I think that's part of why a lot of people are hesitant to pick it up as an identity. For sure. I think it, unfortunately, disability is something that will apply to all of our lived experiences by the time we die. And so I think that because disability is so tied to something that anyone can acquire through misfortune, right?
Something that's tied to our own inherent fear of our own mortality. It is something that is really scary to people. It's in a lot of ways, and I've even had people say this to my face, which is. Wow. But people are like, Oh, your life [00:21:00] is my worst nightmare. I'm like, Oh, wow. Or you really drew the short straw.
I was like, you don't know that many people then. I just don't, do not have a concept of human suffering and the reality that there is. So many people experience that feels like an out of touch comment and I tried not to take it personally But I think that there is that inherent kind of knee jerk reaction Because I think in a lot of ways, I think disability is still seen as I actually don't think that there's a lot of malice towards people with disabilities.
I think there's a lot of apathy towards people with disabilities. It's, oh, it's going to be like an extra, it's going to be like more money for us to pay for an interpreter. So, we just don't want to, it's only one person who really needs it. So, there's like the apathy part, and then there's the inherent fear of our own mortality part.
And the entire wellness industrial complex, by the way, is all about, It's all built [00:22:00] off of trying to tell people that they can buy their way out of their body from bodying all over them. That they can somehow control their health and that they are in control of that. Which I gotta tell you I've never felt that in my life that I've been in control of my health no matter what I do.
I think that we have a lot in our culture that is telling us if you buy this thing not only will you be aesthetically better but you will cheat illness and If you buy our goop egg. And I think it's also this obsession that we have with things sort of being seamless and perfect. You mentioned getting an interpreter and I'll preface this was saying neither of us are accessibility experts, even close to it, but thinking about accessibility needs, it's, it makes things more complicated.
[00:23:00] And less seamless to sometimes meet access. Mostly because it's just not integrated into our society. One thing that really struck me during the pandemic is like all the structures that were built outside to accommodate outdoor dining. If we put this level of care and concern. In New York City to build accessible entrances to restaurants.
It's not that people can't do it. There's just a lack of willpower. And I think it's because there's a lack of people asking for it. When you have a disability. It is really hard to be your own advocate in those spaces. And also, by the way, a lot of us are sick as hell. It takes a lot. I think that also is an element.
The internet has been very powerful for disabled people because it has provided a lot of access and a lot of community and a lot of Robust support for people's connectivity and protest. When people, whenever people [00:24:00] talk about, Oh, activism online is slacktivism. It's like, well, some people use that's their methodology of being able to access the world.
So you probably shouldn't say that. Yeah. When you can't leave your bed, you're out, it's your link to the outside world. And you just made me think of something in regards to. Salma Blair, who has been this visible activist for the disability community. I love that she chose that, because I think she could have chosen to hide.
She really could have. And she just has gone the other direction. And there was, I think maybe it was one of her first appearances with a cane, and she was on a red carpet, and she was like, She comes out and cameras are clicking and there's a lot of people, and she just said, I think maybe to her publicist, It took so much to get out here.
Yeah. And that's so true for so many people. The visibility part. Being sick is tough. Well, right. And being out there. Showing up is tough. Exactly. And I feel like we're sort of leading into this [00:25:00] question around productivity. We're in New York City. One of the most productive places on the planet. In American society, we place such a high value on productivity and very little emphasis on rest.
I'm curious, what would you say about the concept of this worthiness as it relates to what we're talking about with disclosure? Look, I struggle with this myself. Like, I'm not even going to stand up here and Be like, I know how to do this and not care about being productive and not feel like that's tied to my worth.
Because we live in capitalism and capitalism tells us that the more you produce, the more you earn, the better you are as a person. That's morality in the U. S. I also think it's, people see sickness as a moral feeling as well, because you can control your health, right? I think the rat race is not helping many of us, certainly not helping disabled people.[00:26:00]
I think there's a lot that aligns with people thinking, Oh, you're just lazy, you're on disability, or I also think that the thing about disability, it's so tough, and I think one of the things I find to be really difficult for people around me to understand is that I can be good one minute, and bad the next, and it might not make sense to you because when I'm good, I want to be out and about and doing things, but it can turn on a dime.
I think that's also a real challenge is I think there's like a lack of understanding of just the dynamic nature of things. Um, but you're good. You're good. You had the transplant. It's done. They zipped you up. Yeah. There's this joke amongst my friends that I'm like going to a wedding every other weekend, which I go to a lot of weddings and if you invite me to your wedding, I'll probably say yes.
I'm not getting married. I love love. What can I say? [00:27:00] And I went to a wedding this weekend and there's something that happens to me every time I go to a wedding. At the end of the night, my feet start cramping, which never happened before. And I spent a lot of time on my feet and on dance floors. It happened, and it's like this thing that I have no control over, but then there's a point in the night, and I'm like, what's happening again?
And it just turns on a dime. And it's fine, I know what to do, and I manage it. But it's that thing of like, I'm fine, I'm fine, I'm fine. And then suddenly I want to do this thing. Yeah. And I want to be out and doing, I do the, I want to do this thing. I, I get a lot of joy from these things and then I very much run myself into the ground and then I pay for it for the next two, three weeks until I rise again and do it.
all over again. I don't, it's, I am not the model of moderation or rest. So I don't have a whole lot of advice because it's something I'm working on in myself, but that's mostly because I [00:28:00] find a lot of joy out of not resting. I'm a bad arrester, but I think that's a personality trait that I have. I don't think that's a good, it's not, I'm not prescribing this as a good thing.
It's, I'm just like when left to my own devices, I will absolutely chew on the. chair post or whatever. I, so I don't have a lot of, I think that we are messed up about rest and we are messed up about productivity and value. And we tie way too much value to productivity. And I think it's enough to just name it actually, because we're swimming in it.
That's, we aren't taught how to rest. So I think it's enough to just look at it for what it is and see, be aware of it. Right. For sure. In thinking about this, all of us being inside of this. productivity, endless cog that everybody is in. And how it relates to taking on that identity. [00:29:00] How can we bring more people into the movement?
What does the disability movement need? And this is like the covert mission of my podcast with Ms. is to bring people into the fold. I think of disability specifically, like very much centering disability in that podcast, though, we explore all different kinds of. Concepts around health, because I think it's all interconnected.
We talk a lot, and I think the society's actually done a really good job, and I'm so happy for us that we're working on the de stigmatization of mental health issues, right? We've seen, I don't know if you've seen the TikToks. Therapy talk is a big thing. People are using therapy language in their relationships.
Which could, could be good or bad. Could go badly, yeah. But the large part has been, overall, a good thing. That we have de stigmatized mental health. But there are a lot of people who are impacted by mental health issues. And again, It's a sliding scale, it's a [00:30:00] spectrum, if you will, who don't identify their liberation in dealing with that challenge as being tied to someone using a mobility device, as being tied to someone battling cancer.
I don't know, when you go to try to ask for accommodations, a mental health day. Some flexibility from your boss. That stuff is protected by the Americans with Disabilities Act. Your mental health care days? Protected by the Americans with Disabilities Act. That is technically disability rights, providing the infrastructure for you to be comfortable talking with your boss about your anxiety.
Or something like that. I think what is a challenge moving forward is how do we connect those two conversations so that we're creating a dialogue that's not just about, [00:31:00] Oh, I'm anxious today and this like surface level thing. And let's actually dive a little bit deeper and realize that if you're going to, if you want, we're going to talk about this conversation.
We need to broaden the conversation. We need to dive deeper. And we need to connect to the fact that there are people who are more marginalized in this conversation. And being a good ally and reaping the benefits of disability justice movements from history is to be a good ally to disabled people who still need a lot more.
Whether or not you yourself as having a disability, you're benefiting from it. I'm not saying that everyone needs to identify tomorrow as having a disability if they take Zoloft or whatever. That's not what I'm saying. But what I'm saying is if that is part of your experience, if that feels true to you, that you have something in your life that you struggle with, mind, body, something, right?
[00:32:00] You can be a good ally. And, you have benefited from the disability community and their advocacy. And so I think that is really what I'm trying to get people to understand. It's actually very connected. And the more that we realize we're all kind of talking about the same thing. Oh, by the way, when you're pregnant, it's also protected by the ADA.
Addiction. Protected by the ADA, and these fights are united in a lot of ways, and I just would love us to understand that better and to talk about that more. So that's what I'm trying to do. Yeah, and bring some understanding, bringing understanding to people in the workplace because there's so many accommodations available for you that may be You're not aware of.
Totally. And people don't know. But then pushing the needle for other people who don't necessarily have access to [00:33:00] those. The fact that you go on an airplane and people who use wheelchairs have their wheelchairs broken by flight attendants or airline staff. That's a huge problem. Imagine traveling to a country, you're going on a vacation and you land and Your, the way you move throughout the world, your freedom is broken.
And what are you supposed to do? It's so much money. It takes so much time. Yeah. I mean, just those are the things that I'm like, this makes no sense. We can all be louder about this. And we should, because we all collectively have benefited from those same people in crawling up the Capitol steps to get us.
Section 504 of the Rehabilitation Act, the Americans with Disabilities Act, stuff that literally saves our jobs for us, should you need it, right? And I think a lot of people end up needing it. The Americans with [00:34:00] Disabilities Act is the piece of legislation that The Pregnant Workers Fairness Act that was just passed is based off of and modeled off of the Americans with Disabilities Act.
These are all connected. We can all be a part of the same movement, and I think we should. And I also just, I guess my plea to people would be to just not forget about disability as a, you know, category of difference and identity that should be included and brought into the conversation and should be experienced as such.
If we have a second, I want to tell one story. I watched, when I watched the Olympics, I watched Simone Biles. We all watched Simone Biles. She went to the Olympics and wasn't able to perform in her normal ways, right? It was a mental health issue that she was experiencing, a disconnect between her mind and her body, likely because of the horrible trauma that she had experienced as [00:35:00] a survivor of sexual abuse.
Her inability to perform to her fullest capacity, what she normally does. I was like, Oh, that's a disabling moment. That was a moment where she experienced disability on a national stage. And I felt, Oh, wow, that I had a moment there when I was watching that happen. Because that looked, I mean, Simone Biles can do whatever she wants to do on any given day.
But in that moment, her mental health condition was preventing her from performing at her norm. Which is literally what disability is. And that's all to say But I think it's everywhere, and I think it's in our own lived experiences, too, if you really would think about it, right? And so I guess I just say that as an example of this isn't so far from us.
And there's no type of [00:36:00] person, singular type of person who's impacted by disability. Yeah, and I think it's clearly becoming more of a conversation. We saw this British Vogue cover this year with so many disabled activists, and there's really, in TV and film, more representation than there's ever been. But, It's a lot harder to bring people in the movement, into the movement, and it can scare people.
Yeah. And I hear over and over how disabled people feel invisible in that same way that I hear over and over this about this loneliness. So what I want to consider with you is how do we make the invisible visible? How do we change the way the world views disability beyond you? I mean, you were talking about it a little bit just now, but beyond the really.
famous moments or the British Vogue covers. I do think that culture plays a huge role and we have a lot of work to do, even within entertainment spaces or what we watch [00:37:00] on television. So often you have characters who have disabilities who are not played by disabled people. And there are disabled actors who really want the job.
It's just a like about. Actually giving the opportunities to people to use, who are already uncomfortable with using their voice in that way. Because not everyone is, and that's fine, but I think it just needs to be more prevalent in media. We need more analysis. The fact that the New York Times has one reporter who is a fellow for one year and they switch them out every year.
And it's brand new, by the way, last two years, one person who's covering disability. And that's like the only publication that has someone like, I think the Washington Post actually hired. the fellow from the New York Times, so good for the Washington Post. But it's like literally one person, right? And in the meantime, we had COVID.
How many doctors did they put on television? Disability isn't health and science. I mean, I remember when I worked at the New York Times [00:38:00] and I was like, oh, with their employee resource group, is there one for disability? And they were like, yeah, it's called the, I think you'd apply to the Healthy Times.
They talk about fitness and eating, and I was like, Mmm, I'm looking for her. Good for them, but that's not the same thing. It's not the same thing. We need reporting. We need visibility. We need people in positions. We need to hire disabled people. People with disabilities are the most under employed group of people in America.
Give us money. It's bad, right? Yeah, give us money, sure. But give other people money, really. Give everybody money. I just think we have to put more emphasis on some of this stuff. And people have to think that it matters. That's the problem that a lot of people who are marginalized have. Like, visibility and Yeah.
I think the other thing is, it's, like I said, it's sometimes hard to see disability, right? So it's not just about Like, Selena Gomez, for example, has a disability. She doesn't really [00:39:00] talk about it, that's totally fine, but she has a disability, that's clear. We just need more people to identify in that way, right?
And then also we need storylines. We need disabled storylines. We need people who have disabilities to be show creators and writers and write their experiences and into the entertainment space. So that we need disabled writers. And like, not another teen, sick kid movie. Not another five feet apart. Not a sad, sad story.
Not another fault in our stars. Yeah, that is a trope for sure. The sick teen in the hospital falling. Let me tell you, that's not a thing. I was 11 and 12 and 13 for the most, when I was like inpatient a lot. And that was not a thing. There were no boys. No love in the next hospital bed. There were no, yeah.
There was, it was like babies. Literal babies. [00:40:00] Enough of the like, inspiration porn, if you will. Yeah, no more inspiration porn. Like, comedy with disabled people in it. Maysoon Zaid is a good comedian with a disability. Also, uh, I'm going to really struggle with his last name. It begins with a B. He has cerebral palsy.
He uses a communication device for his comedy. And it was just on, I think it was America's Got Talent, actually. And is so funny and has been like blowing up on social media. You'll have to check him out, but yeah, also I think disabled people are very funny and very creative, very creative, very adaptable.
We deal with a lot of, we have to navigate a lot of things. I've made plenty, rigged plenty of medical device on my body. Yes. I've, I have escaped to the hospital with an IV attached to me too. Sure. So I want to just quickly touch on Our mutual friend, Tanya Ingram, who passed away [00:41:00] at the end of last year, and just shout her out for a minute, just how imaginative and incredible she was, and how tired she was, and how she kept raising voices through the whole thing, and I just, if there's anything you want to touch on with how wonderful she was.
Yeah, I actually met Tanya on Instagram. She was looking for a kidney and I just so happened to be, um, looking for her, um, not her specifically. I didn't know that she was going to be someone I would find, but I was looking for people to illuminate the issue of the organ distribution problem. Um, the organ transplant system is pretty arcane system as far as the distribution mechanism goes.
The government hasn't really cared about oversight or really any kind of accountability since it put UNOS, United Network of Organ Sharing, in place. And [00:42:00] they're the national body that then manages what are called organ procurement organizations or OPOs for short. And it's just, the whole system is filled with waste, fraud, and abuse.
They lie about how many organs they're procuring. They just like totally misreport their data. They lose organs in transit. I think they're like 13 more times likely to lose an organ in transit than your airline is to lose your luggage. And the salaries that they're receiving are also So bad. It's so bad.
Wild. And I so I met Tanya when I was working on this piece about organ recipients or sorry, organ people who are seeking organs who needed organ transplants and all the ways in which they were circumnavigating the bad system because you wait on this list for years and years. Tanya's wait was so long.
It's estimated 10 years for a kidney, 10 years on dialysis when the median time of survival on dialysis is five years. So it's basically a death sentence. Yeah, she had lupus. I don't know if we mentioned that, but she lived with lupus. I met Tanya there. We [00:43:00] did the video. It galvanized the Trump administration to move to kind of get the OPO, Organ Procurement Organization, metrics.
more on par with what they were, like, to hold the metrics more accountable. So that was like, this has been a behemoth effort, right? That two people in the country are doggedly working on. And so Tanya became part of our little community. Tanya testified before Congress. Tanya literally told Congress that she would die if they didn't fix the problem.
And then she died. It was just, yeah, I like can't even talk about it too much, but I think that it's weird because I actually never met Tanya in person. Which made me feel really weird about how much her death affected me. Because we texted a lot and sent voice She also didn't text a ton, but then she sent [00:44:00] voice memos.
And we were actually going to do the podcast that I'm doing with Miz together. But that's very disability community of us to not ever meet in person and to feel deeply connected to people. She was one of the most joyful people and I was just blown away by her ability to stay afloat when there was not a lot of positivity to be had.
Yeah, and that's what It's hard to hold on to joy and she just always held on to that joy and it was really humbling. But she was also really honest about her experience which I also really appreciated and was like brave in doing that because when you're waiting for an organ and like you're criticizing the system that is going to give you an organ and we already know that the system is super racist, that's a terrifying experience and she was really, it was like a David and Goliath situation and I.
just think [00:45:00] that she had received threats from the Oregon procurement organization that was in her local area. In the spirit of Tanya, I want to end with talking about we're at the end of Disability Pride Month, which has actually only been in existence since 2015, which speaks to what we were talking about earlier of how slowly the movement is going, but it's great that it's here.
What are some things that you're celebrating? Interesting. This is definitely a part of the celebration for me. And I think that it can be good to have these Heritage History Pride months to put an emphasis, a particular focus for us because there's a lot of need in the world and a lot of hurt, like suffering and there's a lot of issues that need our attention.
And I feel like, Disability Pride Month. Yes, it's about celebration, but for me, it's also being like, Ooh, they're giving us [00:46:00] the microphone. What are we going to ask for? Yeah. You know, and being ready to make that ask. I don't really have like many plans. I've done some things for the ACLU. I don't know. This is always a time for me that feels, summer is always a time that I am reflective of my experience because Disability Pride Month actually sits between my first and my second liver transplant.
My first anniversary is June 25th, 2004. My second one was August 13th, 2004. And summers are when I've always had my major surgeries. Because it doesn't conflict with school. Not that you can plan them, cause you really can't, but I guess that's always how it's been. So I feel very proud of who I've become from Little Kendall because I think I am who Little Kendall really needed.
And so I try to take that with me when I am writing about something or sharing part of my experience and it makes me nervous or being more vocal about [00:47:00] this. I just try to think about me trying to find a literal book that had some element of disability in it. And I remember there was this book, my favorite book, it was called A Face First, and it was about a burn victim.
And that was the only book that I. found that felt like me in some way, and I have very little in common with someone who has experienced a burn, but I and many other people in the disability community, including yourself, are just trying to be that for our younger selves, if you will. Yeah. Absolutely.
Tomorrow is the day that I went into the hospital not knowing what was wrong with me. Oh, wow. And so July as well, summers as well for me are always like, Whoa, and every year it's got better and every year it's a little bit tender. So it's very special to be here with you tonight talking about this stuff.
Yeah, it feels good. And with, with, I want to open it up to the audience if [00:48:00] there's any questions for Kendall. Hi. Okay. When you mentioned your relationship with rest, that really resonated with me personally. Yeah. I'm wondering if you've had a chance to get to know other people who are disabled or with accessibility needs that aren't living in the U.
S. and if you've learned about what their perception of rest is. I do actually. I recorded about half the episodes. So our house is also in the UK and other places in the world. And I interviewed, I don't know how many people, but maybe it was three or four people in the UK. It's a different thing to think about in the UK because in the UK there's the NHS, there's like nationalized medicine and you don't have to worry about health insurance.
There's still a lot of issues with the NHS in terms of getting access to care because what's happening in the UK is there's sort of subtly trying to go the way of the [00:49:00] US in terms of making it a a paid thing. Eventually. It's not, they're like gutting the. funding for it and have been over the past 10, 15 years, but it's not happening anytime soon because the NHS is this beloved institution.
And I've experienced both systems because I've lived in both places and there's a level of rest that you get. From knowing that your needs are taken care of as a sick person, and you don't have to pay for them, that you just don't experience here. Yeah, and I, to just add on that, like, we're all impacted by the shitty health insurance situation in the country, like, Could we not rally around that?
Come on, I literally think that affects Everyone. Yeah. And I feel like it's definitely a disability issue. Absolutely. Because, I think that's actually really cool. And Medicaid and Medicare in this country and how so many disabled people [00:50:00] have to be on that threshold. Marriage equality for disabled people.
If you get married, you make too much money, then you no longer get disability benefits. It's, it's some dark shit, you know? It is dark. I actually know a lot of people who don't work, disabled people who don't work, because then they can be on Medicaid. Because otherwise, if they work, they'll make too much money, and then they'll have really bad health insurance.
It's not like all health insurance is equal. There's a lot of really bad health insurance, and when you're a heavy user I have really good health insurance and I'm still battling their asses all the time. I mean, I spend so much of my time calling Cigna. The hours of time on the phone with insurance companies, that's a whole episode.
Sure. Oh yeah. So I actually had a question, both of you talked about a process of growing into your identity as someone who has a disability. How do you address that with someone [00:51:00] who's kind of in the middle of that process and who's afraid? And also, you know, you mentioned celebrities and so I'm thinking of just like, The average person who does not maybe want to be in the public or doesn't want everyone to know.
So, Oh, I have a lot of thoughts about this actually. Okay. So there have been a lot of people in my life who have gotten diagnosed with cancer or had some other health issue that happened to them. And I watched them. not tell their friends and family. I watched them not share for years and years and years, not share with people who are really close to them, like extended family, literally.
And I think that's a decision driven out of shame. I understand that people can want privacy and I think that that's great and not everyone needs to be shouting their disability from the [00:52:00] rooftop, right? But I think that when people are not honest with the people around them about something like that, that's stemming from them feeling ashamed and thinking that their illness or disability is a moral failing of theirs.
And I feel really bad. When that happens, because I think what it does is cut people off of love and support. It sucks that fear is getting in the way of that. I don't think it needs to be grand gestures, like, you don't need to be shouting your disability from the rooftop. People with disabilities also have other disabilities.
other parts of their lived experience that are just as rich. It doesn't need to be an all encompassing part of your human. It can just be part of you, right? I think having a neutrality relationship with that is probably a great place to start. Just start even being a little bit. It's like testing the waters about being a [00:53:00] little bit more open with your friends, a little bit more open with your family, a little bit more open about something that you're going through.
I started not being so, yeah, I was, we were just talking about this today. I got blood work on, done on Monday and I was like freaking nervous about the results because it, you know, like, Our lives are based off of numbers. I told my associate producer, I'm like, I've been waiting. I'm waiting on these labs.
I'm waiting on these labs. She's doesn't know that experience very well. It's a very unique experience to her. It's a very present experience in my life. The anxiety I feel from the time I get my blood drawn to getting the results. And then if the results are bad, then it goes on, whatever. Just even starting by being honest with like.
Oh, I don't know, in the same ways that someone's like a bird pooped on me on my way to work and I'm having a [00:54:00] bad day about it, you know, or whatever, right? Just starting to share that that is something that you're experiencing and to not hide all of those things, I think is a good place to start. What do you think?
Yeah. I mean, I was thinking. into my illness and I didn't have a choice. Everyone at my work, everyone in my family, my mother was posting 5, 000 word updates on Facebook. Like it was really intense. And so I never had to Choose whether to tell people because everyone knew and surrounded me and encircled me.
And I was so grateful for that, but I've had a similar experience with friends who have had cancer and not told anyone or I'd find out five years after the fact, and actually knowing my experience, people have confided in me. Yeah, we are magnets. Yeah, people love it. And as time has gone on, [00:55:00] initially.
There was a lot of eyes on me and a lot of people wanting to know how I was doing. But now the way that I reach out to people is reaching out to people who feel safe because I am doing so much better than I was eight years ago. But there are still things that I deal with. There's still the blood work.
There's still the numbers that are sometimes bad. And. What I would say to people who are struggling to know, like, how to do it or whether they even want to is similar to what Kendall was just saying, like, who do you feel safe with that you can confide in and who will receive this because not everyone can hold the same information in the same way.
It's that thing of like, you have different friends for different things, and maybe there's just one person who will be safe. To share this information with, and maybe that will spur you to share with another person. And not everyone has to be like me and share multi length podcasts and [00:56:00] book and, you know, just like, let me just write my way out of this.
But there are other ways to share with the people in your life that, for me, it's so healing when I share. And when it's received well and when I'm held. Yeah. And, you know, it's different for everyone. Those people that make them feel good and safe. Yeah. It's mostly a safety thing, I think. Totally. I have so much experience with disclosure in my life that I've received every response you could imagine.
possibly imagine, but I do think like just dipping that toe slowly and then having, it's like muscle memory, right? And you also get better at dealing with how it feels for you and also how other people handle it. I had a big surgery when I graduated from college. And when you're a second semester senior, everyone's both very happy and excited and partying, which I was not feeling like doing because I had this big looming surgery ahead that.
No one knew how it was going to go and if it was going to be a third transplant situation or not. High stakes. It was high [00:57:00] stakes. And I remember the question that people always were at, they were all asking, everyone who's a second semester senior, what are you doing after college? What do you, what are your plans?
I'm like, well, I have a scheduled surgery. I'm not getting a job. Like, I don't know. Am I going to die? I'm not sure. Every day, every minute of every day, I had a different answer for that question based on how I felt at the time and based on whether or not they could handle the actual information and if I could handle the actual information.
So yeah, I think it's about both assessing. The scenario that you're in, but also how you're feeling about it. Cause if you're really raw, that's like, you can sit with it for a bit longer. Yeah. And something that just came to mind that we were talking about before. was for me in terms of dating and being on the dating apps with Disclosure.
And I did this thing like now a while ago, which tells you how long I've been single. But I [00:58:00] wrote on a dating app about my liver transplant as a way to not have to talk about it, honestly, on dates. And it's been on there for a while now. And I have a whole album on my phone of the things people reply to this.
Cause I literally go, what do I say? My, my best friend wrote it for me. I got a new liver at 28 AMA. Ask me anything. I didn't have to spell that out for you, but I did. And the, now I, I switched it. I changed it because, uh, I don't, I felt at that time, I was very different person five years ago, whenever I wrote that.
And I felt like I just didn't want to have to explain to someone. And now I don't feel that way. The responses that I get are so ridiculous. It's good material. I'm happy for the material that I have. But it's, it's changed for me. I put a bikini photo on my dating profiles. I get, are you wearing [00:59:00] a fake, do you have a six pack?
Are you wearing like a tuxedo? T shirt that looks like a six, like, what is going on? People mostly think it's a six pack, which is pretty cool. It's cool. Yeah. It really doesn't like we're fooling. It doesn't look like a six pack, but some people on Tik TOK apparently thought so. Disclosure and dating is a totally different podcast.
Totally different. But you know, sometimes you're dating someone. They, your shirt comes off, and you don't say a word. Surprise! You just wait for them to, are they going to say something? How dare they say something. Oh, that is a fun game. I like that game. Because I know I'm making people uncomfortable, and I'm enjoying it.
I love that game. Yeah, it's a fun game. Don't tell anyone, just, they're just gonna see it. They're like, well. Here you go. I think that's a good note to end on. All right. Thanks. Thanks so much, [01:00:00] everyone, for being here. Thank you, Kendall.
And happy disability pride month. Happy disability pride. Thank you.
That was our show. So life wants you dead. This episode was made with support from Awakening Healthcare, encouraging and supporting providers and patients to reconnect with their souls. Many thanks to Stephanie Moe Davis and Ruby Shaw. Our illustrations are by Renee Fagan. If you like what you hear, please subscribe, leave us a review, rate us on Apple Podcasts, Spotify, or wherever you listen.
You can find us on Instagram at SoLifeWantsYouDead, where you can follow along for updates about the show. Thanks so much and see you next time.