6:11PM Oct 13, 2021
Hello everybody and welcome to the first afford lectures for the disability movement etc series. I'm your host Dr. Andy and I'm broadcasting today from my office, which is on the University of North Texas campus here in Denton, Texas, which sucks on the occupied lands of the Wichita and kado affiliated tribes. I am a white male I use he him pronouns have blonde hair, which is recently cut very short. And I'm presently wearing a nice gray sweater, with a white collared shirt and a necklace that my wife had made for myself. And I'm currently standing in front of my bookshelves, which include among all of the books that I use here, some of my favorite things such as plants, a photo of my wife, and a New Zealand rugby ball back there on the shelf. I'm very excited to welcome everyone who is with us here live and those who are listening afterward. This series has been a real work of passion over the last 18 months. In fact, it's one of the things that helped me get through the daily monotony and overwhelming anxiety from our new sort of pandemic normal. I hope you'll enjoy the conversations that I'll have with our guests and are able to join into the dialogue. I mean, after all, the whole point of disability movement etc, is to learn from each other and try to move and work toward a more just future. So if you'd like to join into the conversation, please use the hashtag, dis move etc on Twitter, or other social medias. And you can chime in that way. So without further ado, I'd like to introduce the first guest that we have. Lily lanuf. Lily is a writer, a fencer, and now we're writer who writes about fencing. She doesn't quite understand why her parents gave a clumsy eight year old a saber, but she's very thankful for it every day. She grew up in Washington, DC and graduated from Yale University in 2018, where she was a managing editor of the Yale daily news magazine. And and she was also a writing partner at the yield Writing Center, as well as a division one athlete and NCAA championship competitor. She is the founder of disabled kid lit writers and her He has received awards from the Los Angeles review, glimmer train and the Scholastic art writing awards, and has been featured in The Washington Post outlook, and the Washington city paper, amongst other places. She's an MA candidate at the University of Eastern Golan Creative Writing prose fiction, and one for all her debut novel will be published by FSG in 2022. And with that, I would like to welcome Lily on with us. Hi, Lily, how are you doing? I'm good, how are you? Fantastic. I really am so excited to hear from you. And I'm excited to hear about your story. And I'm really appreciative that you were one of the first guests or one of the first people on on this series. So I'm really thankful for joining us.
Yes, no listening to you talk about the series. It's it's such an exciting project. And I'm really thankful and honored to be a part of it.
So cool. All right. Well, let's get into it. So just for you, and for everybody listening, the show is going to be breaking broken up into three parts. The first part, we're going to let Lily, tell us a story. She's going to tell us her experiences, from her perspective. mildly touching on physical activity, disability, but she may venture into other topics as well, because that's the point everything is interconnected for us. After that, Lillian I'll have a dialogue after the little interview with her, sent her a few questions ahead of time. So she's well prepared. And then we will have we'll have our let's see where to find it. We'll have some questions, a live q&a from everybody. And so you can go ahead and submit your questions either in the chat, or you can submit them through the link which is now at the bottom here. So without further ado, I will turn it over to you. So please tell us your story.
Yes. Okay. So when thinking about what I was going to talk about for this story, I thought that would be a good idea to, to talk about how I got to sensing because as many people ask me, like fencing, it's not that typical of a sport to hear someone say that they participate in, although it is becoming more popular, given the strength of Americans, it's growing more popular in the US, given the strength of Americans at the Olympics. I'm unlucky for who just won a gold medal and woman spoil this past summer. But I started fencing when I was nine years old, with a friend. And what ended up happening was, I had tried pretty much every single team sport and individual sport that you can possibly imagine. So my mom used to be a professional ice skater, competitive ice skater when a teenager tried that. I'm inherently clumsy. So that didn't go very well. I tried soccer, which I love. Also not very good at softball, not very good at that either. Basketball, track and field swimming, the list goes on. And I just wasn't, I wasn't athletic. I loved being a part of team sports and that camaraderie, but I also wasn't very good at it. So I was trying to achieve some sort of balance. And I was at a summer camp. And they brought in people who did various professions. So we came in who was a firefighter to talk to us. And for some reason, somebody came in, who was a fencer, and I want to make clear here. There are maybe five professional fencers in the entire world. This is not a profession. But I was in trance because I loved the Princess Bride, and I love lawn and I was so excited to see this person, a woman coming in to talk to us about fencing. So I asked my mom, please, please let me try this. And for some reason, my mom said yes. Again, I'm very clumsy. So you know, giving an eight year old a nine year old a sword is not always the choice. But she did it and I started dancing with a friend. I started with foil. There are three different types of fencing tracks. So there's oil at bay and saber. I'm a Sabre fencer, but I started off with foil, like many fencers do, and I was the only girl in my class. And that got old very quickly. And I ended up switching fencing clubs, and the only class open that they had was Sabre, so I became a Sabre fencer. I started competitively fencing when I was 10 years old. I started going to North American pups and national events and the Junior Olympics started when I was 13. During this time, I had injuries. And these are again clumsy, very injury prone. But I only started to I only became a disabled athlete and I didn't even call myself a disabled athletes than when I was 14 years old when I was diagnosed with and developed postural orthostatic tachycardia syndrome, which is pots for short. And it's a blood pressure disorder. It's an autonomic nervous system disorder, but it affects your blood pressure and your heart rate. And the best way that I can describe it in the most simple way is when you stand up, your body doesn't really know what to do, and it doesn't maintain homeostasis. So your blood just travels to your extremities and it doesn't travel up back to your heart. So you can get very dizzy and various sick when you stand up. So add that to fencing. That's difficult. So how we figured out that I was sick. One of the first signs was that I started not being able to hear referees when they said ready fans, because I would hear how brushing in my ears from symptoms and side effects. I fainted on a strip once after about which, you know, not on my list of fun things, you know, fainting in a convention center in front of, you know, over 1000 people, especially as a teenage girl, that was no fun.
So, when I got diagnosed with pots, I didn't really know what that meant for my fencing. At that point, I was still competing pretty regularly, competitions usually every week or every other weekend. And what we ended up doing was I had an incredible coach George Gilman, who's still my fencing coach. And he developed this style offensive when he likes to call green fencing, which was the idea of conserving as much energy as possible. So I used to be a very aggressive fencer, I used to attack a lot. I had to shift styles, I had to become a defensive tactician, I had to learn how to rely on parries which are blocks and making people fall short. instead of attacking. I took a lot of lessons on rolling office chairs, when I was too busy to stand. And so I kept on fencing, I kept on going to classes, a lot of the time I had to sit on the sidelines and watch everybody fans because I was too busy to actually participate. And after a few years went by, I wasn't up I wasn't back at the level that I was at, because I was within the top 10 nationally ranked athletes in the country. And I've never regained that ranking. But I was still doing I was doing well. And I was recruited to college sports, which I had hoped for but I had never expected. Again, at this point, I'm still not thinking of myself as a disabled athlete. It was only when I wrote an article for the Washington Post's outlook about the red bands assess society, which was a short lived TV show that I'd watched a promo pilot for. And I was not a fan. And in it, I briefly referenced the fact that I was a bouncer. And there was such a wonderful response to the article. And I started learning more about disability in the disability community. I read my first disability theory book, RoseMarie garland Thompson. And I got on Twitter because of my literary agents and because of my book, and all of a sudden that I was introduced to this wonderful world of disability Twitter, and I learned so much about one, what it meant for other people, when I identified myself as a disabled athlete, but also what it meant for me to and it's completely changed my outlook, both on myself as a fencer and as an athlete. I don't usually describe myself as an athlete again, because I'm not very athletic. I usually just describe myself as a fencer but it's it's completely changed my outlook on how I fence and also, yes, what it means but also what the sport means to me. I think that it's very easy for people to assume that sports for teenagers are either just a way of getting recruited to College, or there a way to occupy kids time, or maybe, you know, get energy out or make friends. But for me, it was legitimately I was able to stay on with pots. And when I say stand, I mean literally stand, because my legs were stronger because I was a fencer and fencing legitimately kept me standing when I was at my most sick. And that significance isn't something that's, I mean, even though I'm not in the, you know, in the throes of my worst past episodes right now, that symbolism is something that's still is very important for me today. Benson will always be incredibly important to me. And now I coach I haven't coached recently because of the pandemic in grad school, but I do coach, younger kids. So ages, like eight to 12. And that's my story.
Yeah. Thank you so much for sharing that. I've got lots of questions. But first, you know, an intro, you know, you were suggested to me as a guest. And so when I, when you were suggested, then, you know, I started looking in and doing some background research, of course, and everything. And in hearing your story, it's interesting, particularly around the the piece of viewer required disability, that was not something I had known. And it's, it's interesting that you had brought up the idea that even though you started to develop parts that you still never considered yourself, disabled, or disabled athlete. And I have a very similar experience, until recently hadn't identified it as disabled, though I have ADHD and depression. And so, but I think very much in your way, it was almost a what's the word empowering kind of action? And I just wonder if you could speak a little bit to that piece of it.
Right. So I think that one, the act of reclaiming the word disabled, I mean, there are so many really wonderful activists who are doing work. Like the say the word hashtag, and just doing a lot of work to make people or help people understand that disability isn't a bad word, it isn't a bad thing. In fact, for whoever's listening, if you're not disabled, please do away with special special abilities. If I had special abilities, I would be flying or walking through walls. Or, you know, the euphemisms it's fine to say disabled, it's not a bad word. Um, and before I knew all this, I cast myself in my mind as my own super crit, which, for those listening who don't know what that is, it's pretty much every disabled like athlete who like is, overcomes their disabilities overcome some quotation marks because the disability isn't going anywhere. It's still there. Just because I went a fencing route doesn't mean my pots magically is cured. It's still there. But I had done this, I had worked myself up with my mind and my mind because I didn't consider myself disabled because I saw the Paralympics on TV, and I said, Oh, those people are disabled. I'm not. I'm not it's not. It's not that anybody was telling me that specifically. It's just the way that the society is, like, I believe we learn that from a very young age, and it took a lot of unlearning of that. But I also thought about it as in terms of like, Oh, look at what I'm overcoming. Look how, you know, great this is, and it took me until I was in my 20s and college to realize Hold on, you know, one isn't my pots isn't going anywhere. But to this. It's almost a performance. This act of pretending that, you know, oh, look at me, I can fence about, you know, like, let's all clap for the disabled girl. Yay. That's not what I want. That's not what I want for myself. And that's not what I want for other disabled athletes and it's not what I want for other disabled people. If I can help it inspire. And I know that inspire is a loaded word. But if I can help inspire young disabled girls to continue participating in sports, that's great. I love to do that. But I don't need to inspire any non disabled people to say, Oh, really can fence I that means that, you know, I should be able to run a marathon because a fully consents, then surely I should be able to do X, Y and Z. That's not how it works.
Exactly, exactly. And, and speaking of that, I think it's immensely powerful. The idea of role models and in thinking of the same thread, as you were still fencing, and as you were sort of coming to terms with your own disability, and identity as a disabled athlete. Where did you have role models who did, who were you able to look to, whether it's, you know, the big time folks or just even people in your own human circle.
So I didn't, I have, I had role models within the disability community. And then I had role models who were fencers I didn't really have role models, who were disabled fencers, I have a few. I know a one person who whose name I'm not going to mention because I don't know if she is open about her disability or not. But she's been she's been a role model for me. But um, for me, it was more about finding disabled activists that I could look up to, and then trying to apply the way that they approach their own disability to how I approach thinking about my disability within the context of fencing within the context of athletics. So and then there's, there's also the complicated notion of the fact that with sports, I mean, there's so many sports injuries, so many people who play sports right now, who are professional athletes are disabled, we, they just don't call themselves disabled. And I mean, if we look at, like, you know, post concussion syndrome, if we look at, like, all these different things that athletes have, I mean, there's the percentage of athletes who are disabled is probably higher than the average population. Yeah, but we, none of us talk about it. And, you know, it's only something that gets talked about after you retire. So I didn't really have anybody to talk to look up to in that context. But in terms of disability rights activists, I was long has been an incredible source for me, just in terms of helping me one feel accepted within the disability community, but to also just, she's so incredibly generous with her time. And that was helpful in terms of, there's also disability rights activists within the literary community and within the kidlit community, like Marie, nice, calm, and they're wonderful as well. So it was mostly just about me trying to find, you know, people who I could, oh, I can look up to them, I can look up to her. And then, in terms of athletes, I look up to my coaches, and the fencers that I found swift
I have to say, fencing is not a sport, the western kid like myself grows up around, when in fact, it wasn't a thing nice. I knew, of course, I knew fencing existed, right? But it wasn't ever a thing I saw until I did my PhD at UVA. And they, of course, use the gym where my office was tucked in some back corner. And it's just it's an immensely delicate sport, yet very physical. And I wonder if how your experiences with with your particular disability with standing and moving quickly can can cause you to have some issues obviously related to the competition. So I know you mentioned already sort of some of the strategies and changing your your style to better match your disability was there other things that you needed to find ways to adapt or accommodate for
right, so I have to drink so much water, so much water. I mean, to be fair, most of us aren't drinking enough water. Most of us should be drinking more water but I have to drink a lot of water. Want to stay hydrated but too because I mean, that affects blood pressure that affects the autonomic nervous system. cytokines a lot of water, which is difficult because you're running to the bathroom in full fencing gear and trying to use the restroom, and then running I'm trying to find something really good. But there's also you know, I have to adapt my adaptive mind medication schedule. So I don't normally get up at 6am in the morning. But for fencing competitions, sometimes that's what's required of me because the check in time or the check, the check in time is at 8am, or 9am. And I have to get up at 6am, which means that my medication schedule for my blood pressure is shifted many hours earlier than theirs issue of the fact that when I'm sensing for five hours, my metabolism is sped up, which means that I'm going to process my medication more quickly, which means that the, you have to shrink the time in between when you're taking the medication. There's so much math involved in this. And as somebody who doesn't like math, and is not good at math, it's a bit stressful. I also had to become very, I had to learn how to accept when I needed to stop bouncing, when I get injured when I need to take a break. That's difficult. And I think that for athletes, especially, there's this culture of just getting through it, just pushing through it, just pushing through that game, or death out, or until it's
no pain, no gain. Yeah.
And at the end of the day, you have to stop because you're compounding the issue even more. So I had to learn when to say okay, this can take a break. And sometimes that meant, you know, needs that practice only fencing about and like, yeah, that's frustrating, but I know my body and, and, you know, it's better for me to take care of it. The best way that I know how, and not continue to push myself to the point where I'm so dizzy that I accidentally injure myself, which is always a concern. One of the other things that has always is unique is you need to fencing is the mesh mask, which I think that a lot of people to resist Some people like to liken it to like be the keeper outfits. But, and I have people ask me, Oh, that must be so difficult to see through. And it really isn't. Unless you have pots or another or another condition that affects your vision. So what would happen is, when I put on the mask, the mask just looks like solid gray. So it ended up being that I had to learn how to feel the rhythms of the bout and not necessarily be able to see what my opponent was doing. But being able to sense it, and gas and read what was happening. Without that sense, without being able to necessarily see perfectly, which was difficult. There used to be visor masks, you'll probably if you look at fencing, you might see some strange pictures from the bygone era of visor, visor masks that are like this clear visor. But those got banned because they're dangerous, and they shatter sometimes. So that's not great. Yeah, so I used to use one of those. And that was very helpful for me. But then that strategy was taken away from me. So I had to learn how to work with a mesh mask. I think that like anything with disability, and chronic illness, you're always having to come up with new strategies, because there is going to be a day when you wake up. And one of the strategies that you've relied on just does not work. It just won't work. And you have to come up with a new one. So it has led me to become a lot more adaptive to whatever situation that I'm in
a senior, you were one of the first physically disabled athletes to individually qualify for any NCAA championship event. Was that just in fencing? Or is that just overall individual events?
Overall individual events? Wow. Now, I also want to point out that, that just openly disabled, openly, physically disabled, I don't know how many people are actually, you know, again, because as I mentioned earlier, there's this culture of, you know, really don't talk about disability. And yes, that's true, just in general. And that's the problem that society deals with in general, but really, really within the athletic community.
Yeah, absolutely. In fact, I've experienced it regularly, all the way up, even through my sporting experiences. Could you talk about your experiences of being a first and what that meant for your career
Um, so it's It's funny because I've, I kind of I didn't really talk about this in my story at the beginning, but I think it's relevant to say that when I was a freshman, I missed NCAA qualification championship qualification by one spot. I was the alternate for the Northeast region. And at that point, I hadn't even considered championships as a possibility. I wasn't a highly sought after recruit. I was just there because I got good grades. And I felt okay. And I was going to help the team. That was all that I was supposed to do. I was never supposed to be somebody who qualified for NCAA championships, regardless of my disability or not. So when I almost qualified freshman year, and I was so heartbroken when I did it, I thought, Oh, wait a second, I actually do really want this lot. I had a pretty significant back in SI joint injury when I was a sophomore. And my fencing suffered because of that. So by the time I was fencing, senior year, I wasn't fencing, as well as it was freshman year. And regionals came around, and they were at Yale for the first time and whoever knows how long I thought, What a wonderful way to end my collegiate career as an athlete, I'm going to get defense in my home gym, my friends stayed an extra day. And instead of going on spring break, and I got up at like, 8am to watch the fence, which is awesome. You know, my parents got to come up, my little brother got to come up, and my little brother was hackling other fencers, which was not
well approved. And
I mean, it was it was nice. It wasn't it wasn't mean heckling. It was, it was him. insulting the Columbia fencers who were one powder, blue sock and one white sock and going Why can't you get your socks to match? You know, stuff like that? Yeah, it was quite a penguin. Um, and I kept on making it through the rounds and how regionals works is you fence. One pool out, and then they reseed everybody, and they eliminate, however many at the bottom and then you fence another pool round, which is like six people, six ballots. So that's 30 touches, minimum. Most of the time you're about to fencing at least 1520 touches. And then they cut people off, they receive new get new friends again. It is the most hellish competition event that fencers have. I heard that one Olympian said that the Olympics has nothing on ne regionals. And like Olympians have literally been vomiting into trash cans during regionals, because it's so long. And so I. So the final round is a round of 12. So you've spent 11 other people. And by that point, you're just so exhausted. And my freshman year, I made that final round. And my senior year, I was last cut off, and I made it. I said, Oh, that's kind of funny. I mean, I didn't think anything was going to come of it. All my friends. Fine. And I was walking by the bow Committee, which is where you drop off results, and they convene the referees, and somebody said, Oh, see what in Indianapolis. I turned around, and I said, What do you mean? He said, Well, you qualify for NCAA championships. And I just collapsed to the ground and started crying. And my parents, like my parents, or my brother was cooking, everybody was crying. And I didn't know I think how much it meant to me until that moment. Again, because I just hadn't thought it I just wasn't supposed to be for me like that. That wasn't supposed to happen. And then I went to NCAA championships, I did not do very well. But it was an very good experience. And I'm glad that I went and I'm glad that I had the chance. And I think that it's, you know, the idea first is always difficult. So I also have that issue with my book that's coming out next year because it's the first traditionally published book by a major publisher with a main character with pot syndrome. Now, that itself is alarming given the number of people who have pots. There's millions it's it's it's alarming and it's it's not It's not like, Oh, I'm the first person to do this, or the first person to try this. No. So much of it as luck is timing, it's being in the right place at the right time. And none of this can happen without other people who paved the way. So I couldn't have gotten to the point where I could say, I'm going to have this book, without other disabled authors, publishing and kidlit. And the same thing goes for fencing, I had to see other fencers succeeding and doing well, not necessarily disabled athletes. But I saw other fencers succeeding and I, you know, me wanting to really do that, and having coaches who believed in me and my family who really believed in me, and that's what it took.
Yeah. So that gets me to my next question, have you kind of touched on it, but what do you attribute to your successes that you've had, particularly with fencing, but also the extension of that afterwards, as
well, right, um, I really love fencing. If you haven't, if you can't tell, I really I really love that saying, and I think that there are, unfortunately, a lot of athletes who don't love their sport, for whatever reason, because they feel like they are pushed into it. And I don't really never really wanted to be doing that sport, or because it's something that they have to do for a profession. And that takes the joy out of it sometimes. But for me, love of fencing always got me through. In addition to that, like I said, My coach, who developed green fencing to me, for me, who didn't just say, Oh, you know, like, This girl is sick, and I'm just not going to spend time with her, I'm not going to I'm not going to, you know, worry about how she does the competition. So I'm just gonna focus on my other students who didn't do that. So we didn't have to give me lessons. He didn't have to give me lessons in the lunch or in a rolling office here, but he did. And then one of my most of my family, my family kept on, you know, taking me to fencing competitions, even though they knew there was a very high possibility that I would just be sick, and I wouldn't be able to do very well. I'm on. Now that comes with privilege, because my family was eight was able to do that. And that is a privilege. But that support enabled me to continue fencing and continue through the worst parts episodes, until I could get to a point where I was actually, you know, doing better. For in terms of writing, I have like a similar, again, my family is very supportive. I've always wanted to be a writer, I wanted to be a writer since I was five years old. So there was never really any option in my mind of doing anything else. So and I'm very stubborn. So that led itself into resiliency, and terms of saying, Okay, I'm just going to approach this, like, I approached products, like I approached fencing, every publisher rejection, you know, going to get through it. And I spent three years on submission to at Earth with my novel. And I got a lot of, oh, we're not sure if this is marketable, which is, which is code for, oh, I'm not sure if people want to read a book about a disabled person. So I think that yeah, I think in some family coaches. And then also, I have a really wonderful friends who are writers, whether they're disabled or not, who have offered an incredible support system for me. So Tracy Dionne, and you know, post and Melissa C, and Carla Blitz, and Kate Moses, and they're all these people. And like I said earlier, Marie nishkam. They're all these people who have supported me. And I've supported them in turn. But there's a sort of solidarity in terms of what we're going through. Because it is difficult. And then there's also disabled kidlit writers, which has offered an incredible amount of support for me, and I've been able to support other people through that, and I mean, we have over 350 members now, which I could have never predicted when I started it. Oh, gosh, was it so would have been 20. So yeah, it was like two and a half years ago, four years ago. I could have never predicted that. And there's a huge huge populace of disabled writers who are trying to break into publishing and trying to break into this industry and being able to talk to them about What I'm going through and what everybody else is going through. It shows you that you're not alone. And it shows you also when you see the very successful disabled authors who are in the group, for example, Mike Murray, he is, oh, maybe I can do too. And that's and that's kind of the inverse of the whole entire super crip inspiration porn kind of inspiring thing, like I talked about earlier, it's a good thing when disabled people get to see disabled people doing really well and succeeding at something that they want to do, because it shows us that there is a way through the minefield that is, you know, ableism and other, you know, intersections with ableism, whether it's racism, or sexism, or any other ism.
Yeah, absolutely. I'm glad you brought that up. Because that perfect segue into my next question of, at any time, did you face resistance to your participation in fencing?
Yes, I'm not. Not while I was in high school, necessarily. I mean, I still to this day, there are fencers who know that I'm disabled. And they'll try to get me in trouble with the referee, if I take my mask off for like 10 seconds for a breather, which is upsetting to me on a number of levels, because I'm like, you know, you know, me, you know, I'm not, I'm not faking, which is a whole as a whole nother topic of discussion, which I could talk about for an hour. But I think that also, because I was openly talk, once I started openly talking about disability, and undergrad, I think that that made some fencers incredibly uncomfortable. And that's not their fault, necessarily. I think that that's just, again, society and how we talk about disability. And I think that, you know, everybody has to grow and learn and given the opportunity to grow and learn. But there were always issues. So I think the biggest issue was not being believed when I said, Oh, I am okay to funds right now. So I think that there's a lot of, and this is true of pretty much this dynamic is true in most aspects of saving people's lives, whether it's within, when they're talking to doctors, or whoever, when you're talking to teachers, it's the idea of people thinking that they know your body better than you do. And I have nothing to gain by lying to say, Oh, yeah, I'm fine. But oh, no, I'm not in here, I'm gonna go, I don't I don't want to faint on a fencing strip. That's not. And I also I want my team to do well, I want my school to do well. At the end of the day, more so then, you know, having that first of being the, one of the first physically disabled athletes individually qualify for an NCAA championship event. At the end of my senior year, yellowman, sponsoring crap the top 10 and the national rankings. And that wasn't something that we had been anywhere close to for many years. And that was huge. And that to me, as is as, as an individual, I could be incredibly happy about the NCAA championship qualification, but as a teammate, as a yellow fencer, that statistic that saying, Oh, we cracked the top 10 that's a big deal. Right?
For sure. That's awesome. as a, as a, as a disabled athlete, participating with non disabled peers, right? Because typically, when we talk to folks who are disabled athletes, they're typically not participating with non disabled peers in the traditional sense in most sports, right, right. At least those who identify as disabled or would identify, did you ever feel pressure to perform or act in a certain way? I know you talked a little bit about the idea of super crip. But were there any other things that you noticed in your time that just some kind of pressure from non disabled peers, whether on your team or from others?
Um, I mean, I think that I, it's hard to, it's hard to say, um, I think that I definitely did feel pressure to not talk about my condition a lot. And that doesn't necessarily have to be fencing. I mean, I still remember. I mean, all of us have, you know, those awful High School memories of Oh, gosh, that one person said something really awful to me one time and they probably have no idea that they said it and don't remember it now, but I remember every single word and every single moment of every single, you know, little second at that moment, I still remember when I first got diagnosed, and somebody was asking me about it, and I said, Oh, do you want me to explain it, I can tell you about it. And they're like, no, and they laughed, and they watch it. And that was such a foundation was such a foundational moment for me in terms of, I left for college, having decided I'm not going to tell anybody that I parks, I'm not going to tell anybody that I'm probably all disabled. And of course, that went out the window in a few days, because it's very difficult to hide something like that. But, you know, you learn, you know, you intake, the speed back right, of how people treat you when you're open about your chronic illness and disability. And it's especially hard as a teenager, when you're still trying to figure out who you are as a person. At the same time, as you're trying to figure out how to navigate this world, in a body that you is kind of failing you for the first time. You know, you learn and you try to adapt, and that adaptation sometimes leads to you wanting to not talk about it. Again, I think that it helps the fact that, you know, I came into the disability community, and fully accepted myself when I was in my 20s. And I was less worried about what other people would think. And I think I think that it's very easy to say, Oh, I don't care about what other people think. And I think, you know, some people say that, but I think it's more about I don't I care about what other people think, when the when I care about those people, if I care about those people, everybody else doesn't. That doesn't matter in the end. So that was when I was able to fully actually talk about disability. And within the context of answering
Well, I'm just trying to be mindful time we've been talking, I could talk to you for a long time about this. But I also want to make sure those who are watching right now get a chance to ask any questions they may have. So if you're watching you have a question, feel free to drop it in the chat. You can also use the link that's on your screen to submit a question. And while those are coming in, I'm going to ask another one because I still have a million. I know you've fenced, and you continue to fence and you still fence competitively, Coach, you said at the beginning you did try other sports, I wonder Are there other activities or sports that you that you've come to enjoy now is he I'm adult,
I'm less so in the doing them and more so watching them, I'm a huge Tottenham and Brentford fan. Um, thanks to my little brother, who interned with the Bradford Community Trust, which is a wonderful group doing wonderful things for the Bradford community and the surrounding area. And Bradford qualified for the Premier League this year, which was stunning because this hasn't happened in over 50 years. So yeah, so we've been watching today they won their caribou cup game seven, zero, so we're Yes. So I enjoy watching that. I've also really gotten into often ice skating with my mom, because, you know, she was so passionate about it when she was a teenager. So it's nice to share that with her. I also I mean, I loved it. I loved watching the Olympics, like I think most people do. But there are many other activities per se that I think that I've, you know, tried to have, I've always and again, you know, a lot of this comes down to chronic illness and disability, it's, you know, how much energy do I have? You know, what am I going to use it on. And for me, that's always been fencing. If I'm going if I'm going to use any of my physical energy, it's going to be for fencing, so I haven't really, I haven't really explored any other sports. And that's also because again, I've mentioned this probably three or four times right by now, but I'm very clumsy. So there is always the risk of when I try a new sport. I injured myself and then I can't sense yeah, I not personally, but my coach had in college had like a long standing role of nobody being able to do I am sports during the season because people had broken the breasts before and then couldn't sense. That being said, after season was over, I was the CO Ed. I am team captain or co captain for dodgeball for my residential college for three years and it was great. Yeah, I'm 12 the sport that you hate as a little kid, but it's actually really fun as an adult.
As a former physical educator, I have nothing against dodgeball. But there's so many better ways to teach those skills in school. If adults It's fun to get together and do it. Absolutely. hilariously fun. I enjoy. Yeah. That's, that's fantastic. Is there anything that that you either wish you could have done or you you something you want to try in the future that that maybes inspired you, but you haven't had a chance yet.
I've always wondered what wheelchair fencing would be like, because there are wheelchair fencers who don't use wheelchairs regularly, but because they're disabled, they are wheelchair fans. And I've always wondered if, and the way the wheelchair constant works is you have to keep the lower half of your body on the chair. So that levels the playing ground. Because that way for people who are paralyzed from the waist up or from the hips up, they're not competing against somebody who can reach out of their chair and lean all the way over. You always have you, you lose the point you get penalized if you don't stay seated. So that's something that I've always been interested in because it might be it might be interesting to try fencing when I'm not dizzy from standing up.
Yeah, yeah, we have competition of competing,
right? Yeah. I don't have any plans to do that anytime in the future because I like I like fencing, you know how I fence. And there aren't a lot of surprises, you know, surprise with no one there aren't a lot of opportunities for for a wheelchair fencing. I mean, of course there are a lot of there are wonderful clubs and wonderful coaches, they're just not as prevalent as fencing, clubs. And fencing clubs aren't that prevalent to become one.
So typically not. Yeah. So how have your, in what ways has sport impacted you just overall? You know, what, what relationship has it have with your personal life, your your writing, and even some of your advocacy has extended to those areas. Right?
I think that it's always strange to be an athlete in a writer's space, because lots of writers are. I'm, let's be fair, we're all nerds. And I say that probably I'm a proud nerd. But a lot of people will talk about, Oh, I hate sports, or I'm super non athletic. And I'm like, yeah, I'm also not athletic. But I'm also I also do sports. I'm also a fencer, and I'm a writer. I think that also, it's given me opportunities in terms of writing because my first book is a gender bent retelling of the Three Musketeers. So I am getting to write duel scenes and fencing scenes, and then to use my very specific knowledge in order to write better and I also did for time, fencing Fridays, which was my attempt to teach writers how to write about fencing, and sword fighting, and dueling accurately, because, and I love writers so much, I love the books that are coming out, but oh, my goodness, so many of them are so inaccurate. And every single time I, I see somebody use the word lunge, in a defensive context, I cringe, because you launch towards somebody who swear you don't lunch away. So I was, so I did a bit of that. I think that fencing specifically taught me a lot of about resilience, and focus. And I think that I definitely applied that to my writing, and, you know, waiting for publishers to get back to me, you know, persevering through that. And also to my advocacy. And I think that no fencing has made me a much better person. And it's, it's, it's strange to even talk about how work has affected me and how fencing has affected me because I'm 26 Now, I've felt since I was, you know, eight, nine years old, that's most of my life. I don't really remember a time when I wasn't fencing. So I don't really remember a me without fencing. So I think,
to such a part of who you are, and it's been that way for so long, right? That's That to me is the impact, right? Yeah. I don't think having listened to you now. I don't think I think sport has had such a positive role for you. And I wonder how do you feel we could make it so that lilies in the future, other kids who may go through maybe they are born with a decision Ability are they acquired disability at some point? No. How do we make it so that they can have success, have joy in the sport and get those same experiences?
Right. So I will preface this by saying that I think that there is a little bit more awareness coming to the field in terms of the stigma and aggression that disabled athletes face. As a coach, I have to go through offensive air to go through safe sport training every year to renew my coaching license membership. And the first thing that popped up on this year's was that, did you know that disabled athletes, disabled kid athletes are much more likely to face harassment than other athletes. And I had never seen anybody talking about that statistic before. And it made me want to cry, because I was just like, this is the finally being that being recognized as important. I think that also something that's important is, as coaches are, again, this is something that's being you have to unlearn this and I think that coaches are having to unlearn this, this idea of if somebody says, Oh, my ankle hurts, or if a kid, if a kid gets routinely gets injuries, it's not necessarily that they're faking. Maybe they have, maybe they have Ehlers danlos, maybe they have a joint issue, maybe they have bots, there are so many different routes, or maybe they just get injuries a lot, that's also a legitimate thing. But understanding that kids they know their bodies to you know, they understand what's happening to them, and we need to stop assuming that they're lying about different injuries and how they're feeling. And I think that would have helped me a lot. Because I think, you know, when you when you have a kid who says, Oh, I don't feel well, a lot, you just kind of assume that they're faking. And I think I didn't really have the language to use in terms of pots. I thought that everybody when they stood up, completely got blackout vision and didn't see and you know, got dizzy. I didn't know that that was someone that didn't know, I didn't know. So one awareness would be helpful and talking about parts is helpful and getting people to understand it. Even in the time since I've been diagnosed, there's a lot more awareness about thoughts. And I think that also because it is one of the side effects of long COVID there will be even more continued awareness of pots in upcoming months in the future years. But I think that that would be helpful. I think that also, helping kids understand that acquiring a disability doesn't mean that they have to stop being an athlete. athleticism and disability aren't mutually exclusive, they don't, they can exist together in the same body in the same sentence. It's not, they're not things that have to be separate. And I think that if somebody told me that, when I was younger, I think that would have meant a lot. Um, and I think that it would have been, it would have been nice to know that. Especially you know, when I'm when I had to sit on the sidelines, when I had to watch my friends, fans and I can fans. That would have meant a lot to me.
I think that is a fantastic place to end on in a great period as a part of the first of these lecture series. Lily, I thank you so much for joining us for sharing your experiences with us. I've learned a lot I hope those listening in have as well. You've certainly given me a lot to think about too.
Thank you so much for having me. Absolutely. Thanks,
Lily. Thank you everybody. Again, I'd like to thank our guests Liliana for the first we're here we did it. It's true. We're live. You're watching it or listening in. I really enjoyed our conversation. I hope you did too. You can order Lily's Book One for all. Now, you can find it at the link also then get show notes. Her book is can be found wherever you can pre order books, wherever books are sold in the US. And you can find it on Book Depository and Amazon international pre orders. If you missed any part of today's conversation, you can watch the replay here on YouTube. Or you can listen to the whole show as a podcast, which I'll be releasing very soon. Hopefully, you'll be able to listen to it wherever you listen to podcasts future. As a reminder, this was the first of four lectures that I've planned for this fall. You can find more shows coming up on my Luma page which again they'll be linked in the notes in the notes below. Liu, period ma backslash that you can find the other shows that are coming out. Register that way you never miss out if you'd like to support this show as well. Some others that I'm working on, you can find Patreon. It's again, backslash that hippie Prof. Again, I'd like to thank atrium plus for composing music for this show for today that you heard at the beginning and hear a little bit here. And thank you all for being here. happier here. I really hope you join me next time. Oh shoot.