[00:00:05] Speaker A: Welcome to disability empowerment. Now, season four. I'm your host, Keith Murphy Diginsini. Today I'm talking to Liv Mamon, a poet and editor with cerebral Palsy. Lib. Thank you for coming on the show.
[00:00:35] Speaker B: Thank you for having me. It's great to be here.
[00:00:39] Speaker A: So we know a lot of mutual friends.
The one I'm thinking of is Carrie Goldberg, who I methadore when I was doing cards on classical composition for some reason at american university.
And I had interviewed him last season, and he was casually name dropping people, and your name came up. I meant to warn you about that, but I didn't really know you, and it. But when people are name dropping people, you know, on social media, you kind of have to.
I know you're a poet. I know you have cerebral palsy. I know that you live in New York City. I know that you're about to have your book come out.
Other than that, tell me and tell the audience more about lab and what got you into poetry.
[00:02:10] Speaker B: Yeah. So I actually, I did know that Carrie name dropped me on his episode that he did with you on the podcast. I have listened to that episode multiple times. I think he's a genius. I think we also know. Didn't you interview Anita Hollander for the podcast as well?
[00:02:27] Speaker A: Yes, I actually interviewed her twice. Lads season. And she may be interviewed again. No, she will definitely be interviewed again.
Cause she is on tv and has been for several years, cameos.
But it's important for representation. So, yeah, we know quite a few people, some of which I've interviewed on this podcast.
[00:03:13] Speaker B: Yeah, we have a lot of mutual acquaintances, and I'm really, really excited to be here. I listened to the show all the time, so I'm really, really excited to be on it. So, yeah, a little bit about me. I actually, I don't live in New York City proper. I live on Long island with my family. So I'm in kind of the burbs of New York City, but that's where I'm located. So that's usually. I do most of my work in New York City, so that's. That's where a lot of my performances and stuff.
[00:03:42] Speaker A: How did you meet Carrie?
[00:03:45] Speaker B: How did I meet Carrie? You know, we've known each other for so long, it's actually really hard to remember. I think we met. I was doing a reading at the Bowery Poetry Club, I think. And I think that he happened to be there.
It might have. Oh, no. I think it was a reading. It wasn't a disability reading. It was a reading for a friend of ours who we both know, I think maybe Thomas Fukaloro put that reading together who was another poet out of Staten island. So we definitely met at the Bowery, and we had done a few readings together there, and we both were bonding sort of over having traveled to New York to do the reading, both having cp, because the travel can be a little challenging. And part of being a poet with a disability is like travel for an hour, 2 hours to go, read for 15 minutes, and then that, you know, that's my job, kind of. So we were bonding over the struggle of having to do that when we were both heading out back to our respective places, I think him in Brooklyn and myself back on the island and just being exhausted.
[00:04:52] Speaker A: And that would, many years ago, that.
[00:04:56] Speaker B: Was probably, oh, my God, it was definitely pre pandemic.
It was, I would say, kind of the mid two thousands, maybe, maybe 2015, 2016, something like that.
Many, many years ago at this point, maybe while I was in graduate school, I got my graduate degree at Queens College, and one of my graduate alumni was working at the Bowery at that time. And I think that that was how I wound up getting that gig.
So I think that that was, I think it was during our, my graduate tenure, which was, I think that would have been four years ago now. So maybe like 2018, I think at the latest, probably 2018 was when I met Carrie, and I didn't know what a big deal he was. He was, you know, he had performed, he had been performing for so long, and he had performed for so many amazing people, so I didn't know what a resource I was going to have in him when I met him. And he's incredibly supportive of my work always, so that he's great. He's just great.
[00:06:01] Speaker A: So what got you into poetry? What got you into writing, first of all? And then why did you gravitate to poetry?
[00:06:16] Speaker B: Well, I've been writing for. I've been writing since I was a child. I wanted to originally be a novelist. I started writing my first novel when I was eight years old. I really, really wanted to write fiction for my whole life. And then when I was 1213, there was a show on HBO called Deaf Poetry, which maybe you're, maybe you're familiar with. I don't know, maybe some of your audience will be familiar with it. It was a show where spoken word poets would get up and perform their work on television, which I had never seen anything like that before. And I remember watching that when I was young, having written, like, a couple of poems at that time, and then once I saw that, I was like, that's really what I want to do. Like, I wanted to be a performer in that particular vein. And that was also kind of at the beginning of YouTube, that was like, when YouTube first was a website. And so I would fall down these really unfortunate late night rabbit holes, you know, before having to get up at 07:00 in the morning to go to junior high, watching videos on YouTube of spoken word artists. And that was what really, really got me fired up. And I was like, okay, this is what I really want to do with rest of my life.
[00:07:28] Speaker A: Can totally imagine you doing that, because many, many people, probably talent leds, did the exact same thing when YouTube came out. It was like when Netflix came out. Yeah, yeah. So that was quite common.
[00:07:57] Speaker B: Suddenly you had access to all of these things that you kind of never would have seen otherwise.
[00:08:02] Speaker A: No, no. And, yeah, it's.
It's a remarkable resort most of the time.
But tell me more about your journey in becoming a published author.
[00:08:31] Speaker B: Yeah, yeah. I've been really, really fortunate, I think. I've really. You know, the. The interesting thing that really got me started was not so much spoken word. I didn't actually really start doing slam and spoken word. And you can tell me if you need me to define what poetry slam is.
[00:08:48] Speaker A: Yes, please do, because I know that, but.
[00:08:54] Speaker B: Right. Maybe. Maybe some of your listeners. So slam is a particular type of competitive poetry, spoken word. So basically what happens is, and I'm making it sound a lot more, like, serious and sportsmanlike than it actually is, it's a game that you play in a bar with your poet friends. And so what we do is we get up and we recite our poems head to head. Two poets will get. Will recite their poems, and then we take three random people from the crowd who are there that night, who will then score us with numbers from one to ten. Like the way that you would score kind of a swimming match or something, and then that person will advance on to the next round. And traditionally, there are three rounds. There's a three minute round, a two minute round, and a 1 minute round. So each of your poems has to kind of fit into that timeframe. And then there are penalties for. If you go over time or if you have. For there are certain other rules as well. And this can go on to the way that I first found out about it was it goes on a national level. You can go onto a national stage. There's the national poetry slam. There's the woman of the world poetry slam.
There's the individual of the world poetry slam. There were. There are several big national competitions, and that was kind of how I first found out about it, because those are all, you know, those poets. You get serious bragging rights after that. And you. You sort of. Those poets were the ones that I was seeing on YouTube were people who had won nationals and some of the larger competitions. So I knew about that from. From watching all those YouTube videos. But I didn't really start doing that until 20 15, 20 16, 20 17. Around the time that I met Carrie. Prior to that, the thing that really buoyed me up before that, when I was trying to get published and when I was really trying to be a poet on paper as opposed to on the stage, was Long island is the birthplace of Walt Whitman. So Long island has a really, really thriving poetry community. There's a poetry event here on the island. If I were to try to go to all of them, you can't actually go because there are, like, two or three a night, depending on how many people are running things. So when I was younger, there was a poetry workshop at my local library that I went to. I went to that faithfully every week, and that really taught me about how to become a writer when I was young. And then I went to college at Hofstra University, which is a university here on the island. And I started studying under the poets in the creative writing department there.
And I'm trying to think, had I gotten published? I think I had gotten published once before I got to college. I think I had managed to. Maybe that was word gathering. I was published in a magazine for disabled poets by a guy named Michael Northern, who runs a poetry magazine called Word Gathering, which you should submit to if you are a poet with a disability. I think I had gotten published there. And then that poem I submitted as my college entrance essay, because I didn't want to write an actual essay. I figured the easiest thing to do to tell them who I was trying to get into school was to just submit my poems. And so that's what I did. And then I started working with a woman named Connie Roberts at Hofstra, who was an amazing. Is an amazing poet, and another woman named Phyllis Levin. And they kind of taught me ins and outs of publishing and what that landscape looked like at that time. And so I got into a couple of literary magazines that way, which is very kind of publishing is actually my least favorite thing about writing. I'm very bad at submitting to magazines and getting published, and, like, it's just so uninteresting to me. So that's actually one of the more difficult parts. And then after Hofstra, I decided I wanted to become a creative writing professor because I had loved my relationships with my professors at Hofstra and had taught a few classes at Hofstra under the guidance of my professors. I had been a TA for Connie Roberts, and I loved doing that. So I went to get my master's of fine arts degree in poetry at Queen's College, where I met some truly incredible writers.
And that brings us to kind of now, I wound up not becoming a teacher in the traditional sense because of my disability, because my symptoms really, really ramped up in my twenties. I went from, I got very sick in my twenties and went from being disabled to being disabled and chronically ill, which are different things.
And then, so I didn't wind up teaching, but now I'm kind of postgraduate and I'm sort of figuring out how to use all of the education that I got at Queen's to become a teacher in kind of a less traditional sense and not so much in the classroom.
[00:13:52] Speaker A: So how did you eventually get published and talk about selecting the various poems to include in that book?
[00:14:09] Speaker B: Yeah, the book is. So the book is going to come out next year. It's coming out next August. It's going to be called Fire in the waiting room. It's from a beautiful publishing company called game over books, which I'll link to all of the information about us because I think I love that press and there's no other press that I would want my book to be with. And basically what happened? So after and after grad school, I did the spoken word thing for a little while. I competed in the woman of the world poetry slam. I competed in the national poetry slam. I was at capturing Fire, which is the national queer poetry slam that happens every year. So I did a couple of those because I knew I really, that had been my goal from the time I was twelve years old, and I really wanted to prove to myself that I could do it. And then after I did that, I really thought that was going to kick my career off in a way that it.
And I. And so after I did that, it was kind of like, okay, you crossed that off the bucket list, and now what? So now, you know, I assumed that there was going to be more that happened as a result of that than there really was.
And so I kind of had to decide what I was going to do. And so what I wound up doing was I started working on the editing boards of several literary magazines. There was one magazine called Anomaly, which is a very wonderful magazine read by a poet named Sarah Clark.
And I worked with them for a little while, and that kind of got me into figuring out how to select poems and how people put together submission packets and what I liked and kind of learning how to pick poems based on a journal and the aesthetics of a journal that's already established. And that was really, really helpful for me. And it's not like I hadn't published before then, but I was, I was not. Like I said, that part of poetry is boring to me. The putting together of the poems, it's not the most interesting part for me. So that really helped me. And also in the interim, I was working, doing freelance editing work in both poetry and fiction, which I still do. So if any of your listeners have a manuscript that they are working on that they need an editor for, please reach out to me. I'm very approachable via social media. You know, that's really what I do primarily as, like, my job. Job is I edit other people's books. And so that really gives you an eye for the structure of a, of a submission, the structure of a book, what publishers are looking for, because they get thousands of submissions every day. They will, you know, you know, it really teaches you how to get your, your work.
The rest of the pile. If you're reading, you know, if you're an editor and you're reading thousands of submissions every day, you're getting a sense of like, okay, this is how I'm going to get ahead of all these people who have submitted for publication for this magazine. So as I was doing that and as I was editing, I was putting together my first book, and that took a really long time. That book is ten years in the making, actually. It's like, really, it took me a tremendous amount of time to really, like, see the shape of, of that book in a way that wasn't just like a collection of poems, which, of course it is, but it's also, there are books that are a collection of poems, and then there are books of poetry that are, like, books of poetry that you're just like, oh, that's a thing. That's an object that you could actually, like, really see.
So I, it took me a long time to really see that in my own work. And so then what happened when I finally did that, was that the beginning of the pandemic? And I gave my book to my boss at game over books, where I had been working for a little while, where I had been editing, I gave it to Josh Savery, who is our president. And I basically gave it to him because it was. I was worried that I was going to get sick. And I basically was like, okay, if anything happens to me, this is the one thing that I have that I want to make sure somebody knows what to do with in the event of my not being here to be able to do anything with it. I had lost an uncle very, very early in the pandemic. He passed away ten days after we went into lockdown. So there was huge impetus once that happened to get my affairs in order, which I think a lot of disabled and sick people felt.
We all kind of looked at each other and were like, okay, just in case, you know, let's just see what happens. So I gave it to my boss at Gameover, where I had been editing, and he loved it. And after the dust settled, he basically said to me, I'm not going to let you shop this out to other presses. I'm not going to let you keep tinkering with this for another ten years and continue to shop it out to find another place for it. I want it. And I was really nervous about that because that's not the process, really, for getting a manuscript published. You really do submit it and you have it read, and it's like a whole thing.
And it felt very like an act of nepotism to me. And I said to Josh, like, I haven't done any of the things. And Josh basically, at that point was like, I don't care. We've just been through an extinction event. We might all die. Like, I don't really care that you haven't readdez. And so that's why. That's how the book got published. I was really fortunate.
Say that one more time.
[00:19:55] Speaker A: You woke up. I couldn't hear the end.
[00:20:00] Speaker B: So basically what happened at the end? Josh read my manuscript, kind of because I didn't know what else to do with it. I was afraid that I was going to get sick, and I wanted to give it to somebody that I trusted with it. And he said, I love it and I want it and I want to be able to publish it. And I was. I was. I was unsure because, you know, I'm very invested in the process of getting published, and I didn't know if that was fair to other people. And he was just like, I don't care. We just lived through an extinction event. We might all die.
I don't particularly care that you haven't gone through the hoops that you have to jump through and so that was, you know, it was a combination of knowing a group of people that I really trusted and knowing who to give my book to. And also, just a lot of you only get one first shot.
You only get one first try. So I really.
There's a part of me that wishes I hadn't waited so long to publish this first book, but then there is a part of me that understands that you only really get one debut, and there's only one chance to introduce yourself to your audience. And I think I'm doing that with a group of people and with a publisher that really understands what I'm doing. Josh is also disabled, so it really also helped to know that I was publishing with a press that was headed by a disabled person and knowing about me and knowing my process. And that was also really, really helpful.
[00:21:34] Speaker A: So how did you discover the podcast? I'm interested because I never get to ask that question. I believe you're the first listener to really come on this show, and so I'm interested. How did you find it? Who recommended it, etcetera, etcetera?
[00:22:03] Speaker B: Yeah, it was Carrie. It was Carrie well before he had been interviewed for the podcast.
And it was also, I'm addicted to podcasts. I love a podcast. I love the format. I love it as a way of disseminating information. I listen to well over 100 podcasts regularly for every aspect of my life.
[00:22:28] Speaker A: Wow, mad pops for that.
[00:22:32] Speaker B: I love a podcast. If I had more time, I think I would. I would start a podcast. And I think that that is. There was a moment where I was considering starting a podcast with my friend, another poet named Jennifer Hudgens, who I hope. I hope we eventually do get to start that podcast one day, because I love them. They're great.
And while I was kind of thinking about starting a podcast, I was like, okay, what do we really want the format to be? And I started listening to disability podcasts because that was. It wasn't going to be a disability podcast that we were going to start, but because we both had disabilities, we were like, well, that's not going to not be in it. We can't not do it. And I also was curious about how behind the scenes work of it, how a disabled person, yeah. Does a podcast, you know, because it's a tremendous time investment. And all the podcasts that I had been listening to were by able body people who, this was their job. And I was just curious how to do it in a slightly different way, because I was like, well, I'm not them. You know, I can't do it in the same way that an able bodied person would do it. And so I needed to get in touch with other disabled podcasters to see how they were kind of doing the behind the scenes work. I also live with four other people, so they're, you know, like, you know, you get it. You're in a closet right now recording. Like, I. There were some technical things I was like, I need to figure out, do this.
And so I started listening to several podcasts that were about disability. I especially like, I think it's called the Bad Attitude podcast, which is another podcast about disability. Disability that I really enjoy. And then I found this podcast. I just kind of typed in disability. And obviously, because disability is in the title of your. Your podcast, yours was one of the first to jump. And I also really love disability after Dark by Andrew Gerza, which is a great podcast. He's a great dude. And so when I saw disability empowerment, now, to me that I think you and I already followed each other on social media, I think you and I were already Facebook friends.
[00:24:50] Speaker A: Yeah. And I believe either Carrie commended you, add some friend suggestion, or at the time, we were in a social networking group for people who had a. Who have CP and I. So either one of those ways are how we connected virtually. And it's like, I knew you were a writer, a poet, and I geeked out overdose writers with disabilities, uh, because there's not enough, but more than there were. And I'm.
I'm actually a poet myself, except I call them lyrics. So I'm also a musician, and I have three poetry books in my head right now. Uh, and Gary got me talking about my music on his episode. Uh, since high school, I've authored well over 3000 lyrics. And so I have a wealth of walk that I should have to find time to plug in to a format.
And so, knowing that you are a fellow poet and a fellow writer, I didn't know at the time.
I'm from here, but I live back southwards sometimes. And so.
[00:27:08] Speaker B: You know, that that's the most difficult part of it, is, like, when you have a really, really huge body of work, and then it's kind of like, hey, what do I do with it all? Like, what. What need? What form does it need to take? That, for me, is the most challenging thing. So, yeah, the.
[00:27:26] Speaker A: The birds of a trilogy of books. I already know the title of that one. Nomad in the heartland. And that's a title of a poem that I wrote. I can't recall it. Uh, I just like that title. Very, very much because you think you know what it's about, but it can be about anything under the sun.
I mean, just take the Tom nomad and take the term heartland, and you can have a field day with customizing those terms out of the box of what they normally mean. And so I've always been good with titles of poems and lyrics more or quicker than the actual lyric itself. And when I wrote lyrics throughout high school, in college, I would always start in the middle with the chords, and then I would walk up to the mainland, thirds words and downwards to the end. And I've never really broken that structure too much because if it ain't broke, why would you try to fix it? But yeah, I have, I have to get to those trilogy of books. The reason why I mention them is poetry books. Poetry anthologies are ridiculously harder to sell than nonfiction, than fiction. And so as soon as I heard you were publishing book, I had to make a note of why you afraid of.
Not afraid.
Apprehensive.
What? No, anxious on making the birds your debut book, which now led seeming to you. It sounds like this is the most moot question I could ask, but at the time, when I saw that pose, I was like, that's really interesting. I wonder what the creative pod sense of coming to wanting to make your debut work a poetry book.
[00:31:06] Speaker B: Yeah. And we should say it is very hard to sell poetry. No one who's writing poetry is doing it to be famous because you're not. And if you are, you're doing it for the wrong reason, because you're not going to be. I can promise you that.
[00:31:21] Speaker A: There's no poet Stephen King, no poet John Gridscham. They don't sell.
[00:31:35] Speaker B: I mean, I have poets who I definitely would put in that category of like, I have, I know of poets who, who do really well, but they are not the norm. They're, they have somehow cracked the code. And I would imagine they don't do as well as Stephen King and John Grisham if you look at the numbers, if you look at the actual sales numbers of units that they're publishing. So, yeah, you're right. I was, I am apprehensive and anxious about being a poet at all times. I, you might as well be into like, modern interpretive dance for all that it has, you know, cultural competency or like, you know, playing some instrument that no one's ever heard of. I was listening to NPR the other day, and I heard the name of an instrument that I was like, I have no idea what that is. But this guy just wrote a whole concerto with this instrument that I have never heard of before in my life. You know, it's very similar to that. It's. You live in a very kind of insular world where poets are writing and selling to other poets.
I only know one or two people who read a ton of poetry who don't write their own. We're all kind of to each other, but. And honestly, I really. I did want my first book to be a novel, and it was very much going to be a novel for many, many years of my life. And this sort of happened.
You sort of just have to trust your own creativity and your own process, and I am not in it to make money. If you're. If you're going into poetry to make money, get an accounting degree. Like, if I. If I could do anything else, I would really. If I had any other skills, this is not what I would be on this podcast talking to you about. Unfortunately, I don't. This is what I'm good at. This is what I do. And I feel very fortunate to be. To be good at it. I feel maybe there aren't people in this world who get to wake up and be in love with something in the way that I am in love with poetry, that I am so devoted to it. And maybe there are people who don't get to feel that way. So even if in my moments of, like, what the hell are you doing? Who do you think you are? Why should anybody care what you have to say? Which, honestly, is, I think, a message that disabled people get nonstop, every day, all the time, regardless of what they're doing.
[00:34:05] Speaker A: You're kidding me. You're kidding me.
[00:34:08] Speaker B: Yeah.
[00:34:08] Speaker A: No, you're not.
[00:34:10] Speaker B: Who knew? I do think that we are constantly getting the message of, like, what you have to say. Am I allowed to curse on this podcast? I didn't ask you.
[00:34:20] Speaker A: I don't sense the language.
[00:34:24] Speaker B: Like, I think that disabled people, no matter what they're interested in, are being given the message loudly of, like, like, what do. Who do you think you are? Why should you be saying anything? And so fighting against that messaging is very challenging. But even on the days when I'm looking at my book and I'm just like, why? Why would anybody, like, who cares? You know, I just remember, like, I care.
When I was in graduate school, we did a lot of work on, like, whether or not poetry matters. And I hope that your listeners can hear the air quotes that I'm putting around matters because it, you know, because culturally, it really doesn't have the kind of cultural capital of, say, film or music or fiction or journalism or many other types of things. And one of my classmates, a musician named Drew Biscardi, said, it matters because I say it does. And I remember thinking, wow, that's genius. Like, just the confidence of that, I was like, oh, I wanted to do that forever. So, yes, I was apprehensive and anxious to have my debut be a book of poetry. But it is also, in some ways, not to get too corny. It is my religion. It is the thing that I wake up every day and feel devoted. That, again, poetry is in many ways, my religion. It's what I believe in.
And so that is kind of what carries me beyond my anxiety and my apprehension, and especially being a disabled poet, because that is how I identify myself. There are a lot of people who maybe wouldn't want that qualifier and who maybe would be like, well, I just want to be a poet and my disability shouldn't matter. It does matter tremendously to me as a. As a writer and as a performer, because we don't get the same opportunities that non disabled poets might deceive. And so every time I touch the mic or get onto a stage or somebody impacted by my work, that for me, it matters to a lot, to all disabled people. It matters to show them that, like, you can tell your story, you can get your work out there, you can tell other people what it is that you're dealing with, and maybe not through poetry, you know, that maybe there are ways. Maybe you cook, you know, maybe it's a taco or a pair of socks or, I don't know, whatever, but it's an object that was made by you as a disabled person, and that matters for the rest of us that you got out there and you did that thing and you showed it to other people. So there is a tremendous amount of apprehension and fear, but there is a tremendous amount of apprehension and fear, but there's also, in my opinion, a necessity to it. And there's a gratitude that I come to every day that I get. This is what I get to do with my life, is really devote my life to my art, because there are, I'm sure, thousands of people who are much better at doing what I do, but who do not have the opportunity, for whatever reason, to do what they who, to tell the story that they want to tell. So I take that very seriously, not just for me, but for other people.
[00:37:58] Speaker A: So you mentioned you really identify and.
Yeah, identify as a disabled poet. So your disability is, I'm going to assume very important to you as a person, instead of trying to hide it or be ashamed of it, which a lot of normal, uh, temporarily able bodied people think as a young woman. Talk about having a. That sense wide and that unchamed, in terms of wanting to be known as not just a poet, but a disabled poet.
[00:39:17] Speaker B: Yeah, it's been a journey. And I. You know, and I will preface this by saying, you know, it's not linear. It's not. You know, you don't wake up every day and feel the same sense of pride, you know, when you've fallen in the bathtub or what, you know, whatever thing it is that, you know, we've all had those mornings we wake up and we've, like, accidentally shit ourselves or something. You know what I mean? Like, some sort of really embarrassing thing. There are not. There are those moments where you're just like, man, like, I will fully go on record and say, like, not to be disabled. If there was an opportunity where they were like, yeah, we'll give you this injection, but there's a 50% chance it might kill you. I'd be like, yeah, look through all those dice. Let's just see what happens. I don't know. I would. I will fully go on record and say, there are days when you're just like, I don't want to do this. This is hard. This is ridiculously hard, and I don't want to be bothered, but.
So it's really been a journey. When I first started, I really did not want to write about my disability. I was very against it because I. You can't see me, listeners, but I walk with crutches. I'm a visibly disabled person.
That is very much the first impression you get of me as you see me coming toward you on crutches. And that is definitely.
I'm very clockable as a disabled person.
[00:40:41] Speaker A: Wait, did you just say clockable?
[00:40:46] Speaker B: Yes. Yeah, I am.
[00:40:49] Speaker A: Please explain that.
I don't have that word used a lot.
[00:40:58] Speaker B: So clocking, when you clock someone, you see them for what they are. When you clock somebody, that means that you can see them for what they are. So I am a visibly disabled person.
I'm able to be clocked as a disabled person. I used to use a wheelchair. You can tell there's no sort of hiding it unless I'm on zoom with you. There are other options where I can digitally make it not known, but in the actual real corporeal world, there's no way to make it not known for me. So I really was just at the initial stages of my writing poetry when I was young, when I was 1819, I remember thinking, well, you can see it. Like, I get up on stage and I'm on crutches, and I'm talking into a microphone. Why should the poem also then be about experience if you can see it? Everybody knows, like, I want to illustrate another part of my experience. And so that happened. That went on for a few years, and then I got to grad school, and everything I was writing in grad school was very dead. Like, there was just nothing emotionally alive in it. And I was really struggling, and I was really, really struggling with the rigor of being in grad school, of having to write several poems two days, you know, for a class. And really, you have to write a ton when you're getting an MFA. And I was really, really struggling, and I was struggling to find a topic. And I went into my, the head of my department, a poet named Nicole Cooley, and I was explaining to her, like, I'm, you know, I really don't know. I feel like I don't really belong here. Like, I feel like I'm not getting it. Like, nothing is really coming live. And she handed me a book called Beauty is a Verb, which is a collection of poetry by disabled people, which I had never even seen. Like, I kind of. You. You must know intellectually that there are other people with disabilities out there.
[00:43:05] Speaker A: Yeah.
[00:43:05] Speaker B: You must intellectually, in your brain, know that that's what's happening. I didn't.
That there weren't any disabled writers, but until you can hold a book that's huge, so thick in your hands with a picture of huge volume, and I was sitting there holding it, that just changed everything for me. That was. That was just like, there are people who are doing this.
[00:43:34] Speaker A: Yeah.
[00:43:35] Speaker B: I didn't realize what snapped into my head was like, I've been writing for able bodied people. I've been writing comfort my able bodied audience.
I was like, well, they're already seeing me on crutches on stage, and that's already going to be really uncomfortable for them. I'm not going to, like, give them any more of my experience to have to digest in my actual poems. And it wasn't until I held that book in my hands that I was like, yeah, but what if you actually wrote for disabled people?
There's a great writer, Toni Morrison, who. She's a black author, and she has a quote, I don't write books for white people. And that was. Yeah, to me. Yeah, that was so mind blowing to me. I was like, wait, you can actually pick who the books are for? And that doesn't mean that, like, able bodied people can't buy my books. You know, please buy my books. I really want you to. But in terms of making the thing and writing about the thing, you can actually choose who it is that you are addressing.
For me, that was a mind blowing piece of information that I was just like, oh, I have a point of view.
Not everybody has, and people need that point of view. Like you referred to them earlier as temporarily able bodied people, which I was. Which, yeah, yeah, you know, you're all going to catch up, guys, I hate to tell you.
So I, you know, at that time, when I was in kind of my early twenties, I realized, like, I've been neglecting actually the biggest part of me, the biggest part of what makes me different from other people, because I have been ashamed and I have not wanted to share with people what it's really like out here.
Poetry will only be able to come alive if I embrace parts of myself to write about and show. And that's not always and pretty, you know, like I said, there are days when you just don't want to do it. There are days when you just are like, this is hard, and I would much rather not be doing this, and there are people who don't have to do this, and I much rather would not have to worry about this, but I do. And so I'm grateful for it because it gives me a point of view even on the days when I'm just like, oh, God, we gotta deal with this again.
I needed to embrace that part of myself and live shamelessly in order to create work that was real and alive. And because poetry is more important to me than anything, was really a mechanism to save my poetry and then to save myself.
It was like, I can't do this job that I want to do if I'm hiding.
[00:46:42] Speaker A: Well, all of that language. World of wisdom right there. I'm not really sure where to go, how to follow that.
Well, we talked about your apprehension in ancient Ned's of making your debut book, a poetry book, which in this interview, it's now clear you are true born poets. You live and read poetry. You also live and read a lot of fandoms and that they are extremely important to you. Would you mind talking about that?
[00:47:45] Speaker B: Yeah, I would love to talk about my identity as fangirl trash. That is my. That. I love it. Oh, my God. So I was. My first experiences writing for an audience was fanfiction, which for your listeners who don't maybe know what fanfiction is. So fanfiction is a type of writing where you take an already existing property, be it a game or a television show or a movie or any kind of thing existing in pop culture that you love, and you write stories about it. And there are very thriving communities of people who will read and comment on your work, who are interested in the same thing that you're interested in. And that was how I really got started writing for an actual group of people who I knew were going to read it. You know, I had written things for me all through my childhood, but that was the point at which it was like, oh, there are going to be people who are interested to hear what you have to say, and you're going to wait for your work to come out. I started writing for the musical rent, which I'm sure you're familiar with, I'm sure a lot of your listeners are familiar with. And that got me started on the level of community that can exist in these online fan spaces where, again, nobody really knew I had a disability. This was way before the period that I just described to you as an adult woman. You know, I was just a really good writer, and people really were into what I was writing and really praised my ability to write a story that existed, that felt like it existed in the world that had already been created, which is the biggest goal, honestly, of fanfiction. You really want to make it feel organic to the thing that you love and are inspired by. And so for that, that also, I think part of where I got this idea that I was like, well, you want to blend. You want to be able to blend in, and you want to be able to maybe not so much not have people know that you're disabled, because, again, I'm visibly disabled. You know, there is no way not to know. But. But I think because of fanfiction, I was able to see myself as a writer first and then became a disabled writer.
That, and now I'm sort of molding those two things together. I'm working on in the year of our Lord 2024, I am working on a long form, Buffy the vampire Slayer of fanfiction, about the only student with a disability at the high school that Buffy the vampire Slayer takes place in.
[00:50:23] Speaker A: Was really hoping you would mention that.
[00:50:28] Speaker B: I'm so glad. I'm so glad, because I think I just made myself look very childish to most of your audience, but I don't care, basically, what happened with that. There's a very specific story.
So for those of you who don't watch Buffy the Vampire Slayer. The earlier seasons of the show largely take place in the high school library. That's their kind of command center where they go to fight all of the monsters. And there's a running joke that this students never go into the library, and that's why they're able to get away with nobody knowing that they're doing this, because no one goes in there. When I was in high school, I was legally obligated to spend all of my free periods in the library. There was, like, a note from the school district being like, do not let her outside, because if she gets hurt.
So I spent my time in the library from the ages of about eight or nine years old until I was a senior in high school and was able to leave campus.
I remember watching the show and thinking, if there was one girl in a wheelchair in this school, the whole thing would just be blown. She would have to be a part of it, because the principal would basically have said, you have to stay in here. You can't not be in here. So that was, you know, one of the things about fanfiction that I find really fascinating, because a lot of people who write fanfiction are from various marginalized identities, queer people and disabled people, without sort of finding a space for yourself stories that you already love. Like, I was able to kind of find a corner of the story and be like, there's no one representing me here, but there is this very. This hole that I know about because of my point of view.
And I could bring myself to this story that I. That I have a lot of love for. And, you know, so that also has to do with kind of the larger project of writing towards representation, you know, not just in something as niche as fan fiction, but, you know, just. Just getting out your point of view and saying, I have a world that I live in. I have a point of view that I'm. I. That I can advance. And I think that a lot of people don't feel they have the permission to advance their point of view, especially in art.
You know, the idea of making something specifically about yourself that feels, like, weird and maybe, like, grandiose or something.
I want to give permission, especially to my disabled brethren. Your story, make your thing.
[00:53:12] Speaker A: If I may, soon.
It sounds like you found a lot of love, a lot of community in the fanfiction, in fandoms.
Could you compare that with the level of community that you found with your disabled brethren, as you just said, in both online and in real life? Because I think both are extremely important to pull back the curtain on people with disabilities actually have a very vibrant, or can have a very vibrant social life, uh, sense of community, a sense of pride, etc. Etc. And I think that's very important to illuminate.
[00:54:29] Speaker B: Yes. And also, and this seems like a very basic thing to say, but you'll understand that it doesn't seem quite so basic to people who are not in the world. People with disabilities have hobbies like, I understand that, you know, shock ya.
It seems so basic, like, things that I can't believe I'm having to say into a microphone. But, like, you know, that's, I think for me, the crossover between the two is like, in the fan community, you're bonded together around your passion. You're bonded together around this, whatever the thing is. You're bonded together around this thing that has given you passion and in some cases, comfort, because we all have really, really difficult things that we're dealing with in our lives, especially now. Have you looked out the window? It's rough out there, you know, and I think that, you know, the thing.
[00:55:28] Speaker A: I mean, to laugh at that.
[00:55:30] Speaker B: Yeah, yeah, you watch. Watch your, you know, whatever your thing is, go with your thing. If I have anything to impart to your listeners, whatever is making you happy, it's not hurting another person.
Do the thing. Watch the television show. It doesn't matter. It's real hard out here.
What makes you happy. But I think that the combination is, I think, disabled people, we are forced to be passionate people because we have to advocate for ourselves. We are constantly battling in a world that is not built for us. And so it may not always come out kind of the traditional way of like, I'm a loudmouth. I'll say whatever, I don't really care. But, you know, it may not always come out in the traditional way of being loud. And I really being able to articulate your experience.
We all do it in different ways, but we need to be passionate about our own existence, because if we're not, nobody is going to be passionate about us existing. They don't want you to, like, not to get all tin foil hat about the whole thing, but we have to be passionate about ourselves and about each other. That's the only way we're going to survive. And so I think that's, for me, where the crossover comes in between being in the disability community, and I'm using that term very loosely because obviously disability encompasses huge amounts of things, and there are lots of disability communities that I'm not in that I wouldn't feel comfortable speaking to, and being in the fan community, which is also enormous and huge and encompasses a great many people doing a great many things, but they have to be based around the passion to be alive. And if the thing that is getting me out of bed, the new show on Amazon or some actor that I love that I really would like to respond to me on Instagram, fine. That's the same impulse that gets me out of bed to sit on the phone with the Social Security office for the next 6 hours because they or whatever thing I have to conquer that day, going to the poetry venue that's not accessible, that I have to climb up five flights of stairs to get into and read my palms. Like, it would be very easy to kind of roll over and be like, yeah, I don't want to do it. It's hard.
And the new phase of my life is kind of learning to listen to when I don't want to do it because I have pushed myself. And you can hurt yourself pushing yourself as hard as I have pushed myself. So my new thing is like, listen to that voice. When do you, when do you rest? When do you take it? Take a deep breath and just let yourself. And that's what is providing in my, in this new phase of my life is like, when do you just want to lay around and watch tv?
You know? When do you get to do that? You know? So I think that passion is what brings together the two, the disability community part of myself and the fandom community part of myself. And also, like, I don't know if people know this, but in disability communities, we don't just sit around talking about being disabled. If you've got a record that you.
[00:58:51] Speaker A: I'm shocked. Shocked. I just used to from Kadziblanca in k, right?
[00:58:59] Speaker B: Yeah.
[00:59:01] Speaker A: What that looked my favorite movie. Hello.
Wait. People in disability social networking and social media groups don't just sit at home or sit wherever they'd said in moan about the roads of being disabled. Again, I'm using another tab assumption, symbolically able bodied. So if you wouldn't mind, take goods in to what people with disabilities, whether it's fandom groups or other groups, what are some topics that circulate a lot of the time that will repeat the, oh no, we just mention our disabilities at Nazam because that's not true at all.
[01:00:19] Speaker B: That's not true at all. And there is a part of it that is that because we are sharing information, we are giving each other other support and solidarity. So I'm not saying that we never discuss it because of course we do. I owe so much gratitude to the online space that you and I met in on Facebook for people at CP. I wouldn't have found out about the treatment that I'm currently undergoing Botox injections without the people in that group. And actually finding my own doctor was directly from the people in that group when I was like, okay, I'm in the market to go get Botox. Who is doing the work? You know, so we do. We share that kind of information in those groups as well. But for me, it also depends on, like, what you want to talk about, right? Like, what. What things are you already interested in? Like, I. You know, for some reason, there's a lot of crossover between Taylor Swift fans and people, young women with cerebral palsy. I'm not really sure what the Taylor Swift is giving my sisters, but she. A big topic of conversation.
[01:01:25] Speaker A: Well. Well, if you can understand it live, then I try and tell people.
[01:01:36] Speaker B: Anyone'S yum, ever. If you're into a thing, I am never going to tell you that the thing that you're into is not good. I'm just never going to say it because I just don't know. I have a. I am curious about the. If I had more time, I would like to write some interviews about, like, the crossover between young disabled women, Taylor Swift fandom. I'd like to know what's going on there, you guys. What's she giving to all of you? Because I just don't live in that. Like, that's not my circle. I just don't live there. But I love talking about music. I love music. And one of the major reasons I wanted to be on your podcast was listening to you and Carrie talk about being in that music class together where you first met.
I love music. I think I love music more than I love poetry, actually. I think I became a poet because I couldn't become a musician. And poetry just seemed like the next best. I was like, okay, this is, like, related. All right, sure. But if I had the ability to actually be a musician, I think I wanted to be a folk singer. I wanted to be Paula Cole. That was really kind of my ambition.
But, yeah, I love talking about music. I love talking about books because I find, and this is not true for everybody, obviously, but I find. I think being disabled is what made me a person who loved books. Right? I mean, you know, you're stuck in the library. What are you going to do except read? So I was always a big reader. I always loved telling stories, and that didn't require any of the body parts that I can't use. It wasn't like I wanted to become a soccer player or something, which I, you know, if you are disabled and you want to become a soccer player, do the thing. Absolutely. But for me, personally, books were always really comforting, and so that I think the part of the. I think my disability can't be separated from me being a person who loves books. I love talking about books. I love talking about music. I like talking about. I don't like it so much now, but I used to love talking about politics. Now it just gets me stressed out, especially on social media. I'm just kind of like, this is not a good place to be discussing politics. But I loved. I love talking about also having a disability and being an artist. That, for me, is like, my favorite section of discussion of, you know, talking to other people who have disabilities, who are making art and, like, how do you actually do it? Like, for you, how do you make music? How do you write your lyrics? Do you type them? Do you hand write them? What's your process like?
[01:04:13] Speaker A: You know, I've done both.
I'm proving in both, even though I have a hand writing disability, which is fun, I've never wrote music to lyrics. The music I write, as Carrie, a mutual friend, made me talk about. We did not discuss that beforehand, and so I had to open up about part of my artistry that I hardly ever mentioned, that the electronica side, the only Olay Tibet side, is where I write the music.
But I'm a wordsmith. I'm the product of two professional writers. Writing was encoded into my blood stream. I'd started when I was seven. A little charming story about a deer or something using storybook weaver, that old program. Uh, but yeah, it like.
So the lyrics back in high school were bubblegum pop.
I used to make the comment that the back street boys wouldn't even touch them. They were that savage level, and I thought they were the shit, how dull it was.
[01:06:29] Speaker B: I missed that, though. Don't you. Don't you miss being, like, 13 and just writing the app? Just drivel, and you thought it was amazing. That's the thing I miss most about my early days.
[01:06:40] Speaker A: I would be able to ride an entire album of lyrics in, like, three or 4 hours now. The lyrics come much march slowly, and they mean a lot more like the two I'm thinking of.
Judge of the top of my head is be who she sees in me, which is prayer to God about dating with SpongeBob, a man of faith. And so I created a love song and switched it from a woman to my creator.
And so I'm very fond of that one because of the creativity I had to use to get, uh, to craft that lyric. Uh, the one I'm probably the most proud of is a lyric called good morning, beautiful human, uh, ads. Many people on social media know when I actually posted non pot dance related things to my facebook.
I have a very lovable and very affectionate rescue dog named peppa. She's a dummy chintill max. And so I imbued a lyrica will I transcribe what she would say to me? And that was very eye opening, and I'd spoil the end. There was no way to end that poem without crossing the Rainbow bridge. There would judge no way I could finish it. And that would really a long standing poem, a long term poem, more traditional than be who cheat seeds me, which was really a song. I have yet to find someone to write music to. But, yeah, going from high school, where I was a lyrical fiend, and I would write up words of 30 a month, and I'd still have a lot of those albums. When I was writing lyrics in high school and even some in college, I would write them as track one, track two, track three. So they were already pretty trapped, as if you were actually reading lyric books from cds.
Now, they are two or three ad modes a year.
[01:10:43] Speaker B: Oh, yeah. Oh, yeah, for sure.
[01:10:45] Speaker A: They mean the world to me. I mean, and it's not bubblegum pop anymore. I remember the most creative title I came up with was a song called basketball Disease, and I actually really love bastball. I'm actually really good at it. So I don't know where that title came up.
And so it's progressing from writing bubblegum pop that no one would dare touch in a recording studio, and thank God, to writing very profound, very personal works that I would not trade for anything. I I think I. The last real full album I wrote that I'm proud of, which goes back to my faith. It's called something more and reconnecting to my faith. And I actually wrote that at a very harrowing period in my life, at a very unusual and undisturbed location. And that album, that collection of lyrics really helped save my life.
And so that was a turning point. But I'm very happy to judge, write, or even co write. I remember co writing handful lyrics with a college friend of mine named Jonathan Swan, and we would tackle very, very deeply, uh, topics, topics like sexual identity, which he. He gravitated more towards. And I would judge along for the creative ride of helping him out.
[01:13:48] Speaker B: Yeah, that's also really important to me. I'm. Yeah, that's also a really, really important part of my life that I hope gets into the poetry more as I sort of keep continuing to think about it and work on it and think about what it means to me. But I'm also a bisexual woman, and that's a really important part of my identity. And I think that's another thing, you know, going back to what I was saying before about being able to say your truth as a disabled person, you know, there are a lot of misconceptions, misconceptions about us sexually.
And so for me, you know, saying that I'm bisexual, that's part of being truthful and saying to other people who may not know it, you know, we have desires. And I think that that's important, you know? You know, for you, it was probably a little bit more uncomfortable at first that your friend wanted to write about these topics. And it's like, okay, I guess I'm along for the ride. Like, I guess I'm here now.
[01:14:46] Speaker A: No, I mean, that's a very fair assumption. I actually liked being able to tackle a very sensitive issue that I wouldn't dare try to tackle myself because it would be completely unauthentic.
And I remember one lyric he came up with that I really enjoyed was called Gaynor is okay neds.
[01:15:32] Speaker B: And that I love it.
[01:15:35] Speaker A: That would.
And one I came up with is Midsunder stood in parenthood seeds. I've had enough. And so we would bounce ideas off of each other, and I co wrote with my best friend, who was also named Jonathan. Unfortunately, he no longer with birds. And we would tackle poetry and lyrics about raids. And he was african american. And so I really enjoyed being able to be involved in very personal lyrics like that, because as those who are legit into and watching this pod that I am a cisgendered white male, I am not bisexual. I am not a woman. I leave that.
That story, that experience to you. And that's also why I asked about what is like being a woman with disability, particularly in a big city, whether it's New York, Barber, or Long island or Upper New York.
Upper New York. Okay, maybe.
[01:17:27] Speaker B: Maybe upstate. I don't. I don't. Yeah, who knows?
[01:17:30] Speaker A: I mean, you mentioned, uh, that you bonded, really, with carrier over poetry and going to traveling 2 hours to a poetry reading to read 50 minutes worth of your poetry. And I would be naive to think that travel for a young woman is the same as it is for young men, particularly with a disability.
And so it's about approaching those topics, topics that you add the writer as the interview, know very little, if anything about in being able to lean on the person of the people who obviously know it remarkably totally better than you. Like, Gaynor is okay, was very much Jonathan swans lick. And I just happened to write one or two lines that I thought was catchy, hypothetical, same thing we co wrote together. It would be as respectful as parts we could be, because I. I didn't want to trivialize his experience or add my own take to his experience, because that wasn't fair. Like the original concept of that, what is now a video cat was. I was going to record interviews. No one would hear them. I would type them up, embellish them for narrative, and create a blog. And then I rightly remembered, no advocate is going to allow me to tell their story, and they shouldn't. And so I put inside my writing and judge switched mediums, and it's.
It was the bets decision.
And another mutual friend, Nick, in the CP group, he actually work chopped the name with me.
And so it's about leaning on community, where you find it, not being afraid to share in experiences. Like, your assumption, which I'll get back to, was very, very. And, uh, would have been right on the money. But even if that was the case, it was like, I care enough about this person who, for some reason, once, to write each song about alternative, alternative sexuality with me.
But two of my family members are also games. So I asked them for advice, but I knew the person wanted and felt honored to be able to illuminate both sides of that person, even at that time, where he didn't really need my help, but he trusted me enough to be able to say, hey, I'm having trouble with these two lines. You would, Smith, can you help me out? And so.
And that's what community does.
[01:22:43] Speaker B: I think that that's a word that I use a lot as well. When you said that you were honored to be able to illuminate your friends experiences, that's definitely a word that I use all the time. When I thought, when I think about my students, when I think about the people who come to me with their manuscripts to be edited, I'm so honored to be asked by every single person, hey, do you think you can lend your. Your skills to helping me get this out there? And that's a really serious thing, to create something and then have to give it to another person and be like, hey, can you help me? That's a. That's such a vulnerable thing to have to do. And I really. I take that so seriously. When anyone comes to me with anything that they've written or they have a class idea that they'd like me to come and speak at, they'd like me to come and speak to their students, you know, it's a huge vulnerability to ask someone for help. And I think the great. The greatest gift for me of art is empathy. And the greatest gift for me, specifically of poetry, has been being able to read and listen to the work of people who are very, very different from me in their experiences. And, you know, some of it is putting the ego away. And not every story is going to be your story, which is the difficulty of fiction. You know, I think that fiction difficulty is you could. You can make a character that is anybody, you know? And I think that there are some moments where you kind of have to go, maybe not me, maybe. Maybe someone else needs to pick it up. And I think that, for me, the greatest gift of poetry has been just being able to hear the stories of so many different kinds of people and being able to really learn. Because I think we're afraid to say that we're different from each other. I think that we really get scared of that, and we want to believe that we're kind of all the same. And because I think in order to say that you're different, you think that that means that you're undercutting someone else's humanity, that they feel the same things that you do. But we are all really different from each other, and we can come together learning about our differences, which is why I write about being disabled. I think that if you can come and meet me in a certain situation that maybe you haven't considered, that's great. That's fantastic. If you have experienced it and you're seeing it on paper and somebody else has gone through it, too. Wow. And if you haven't been through that experience, you may have a skill set now, for if you ever get involved in that experience, one of the greatest things that ever happened to me, a friend became ill and wrote to me and said, if it had happened for you and the way that you talk about your life, I would have thought my life was over when I got sick and I became disabled. And it's because of you that I know that I can have a fulfilling, rich life, just different from the life that I had before. And that was mind boggling to me, that I was able to help that person do that. That's great. That's so awesome.
[01:25:54] Speaker A: Yeah. Like co writing lyrics. Ridiculously. The ones I mentioned was very special to me because I've never really been asked to co write lyrics and co write them on topics where I rightly so need and should play second fiddle because I'm the backup. And there I can hold all the lines I wrote in those songs because all of them combined were half a page. It would.
[01:26:45] Speaker B: Right. You can. It's about lifting up.
[01:26:48] Speaker A: Yes.
[01:26:49] Speaker B: Lifting up the other artist and letting them be able to say what they need to say and you're there and, you know, it's such an incredible thing to be able to help someone.
And I think that for me, that's even more important than I really want to be a good writer. Of course, that that is the goal of any artist. You want to be good at what you do. And I don't think that necessarily means being the most famous or being the most read or. Or whatever. But for me, even more than being a good writer, I want to be a good citizen of my community. You know, I want to be a good literary citizen. I want to be able to have it said of me that I helped other people in my realm and got other people's voices out there.
The little bit of a platform that I have to share. I think that that's crucial. That's so crucial. We all need to lift each other up. And I had another thing that I was going to say, and now it's. I've lost it. I don't know. I don't remember quite where I was going with that.
[01:27:50] Speaker A: But really important, that means you just have to come back for another episode.
[01:28:00] Speaker B: I would be so glad to. What was I going to say? I lost it. It's gone. But crucial that we lift up one another and that we lift up each other's artistry and that we consume each other's work. I think that that's also really, really important. It's more fun for me to read poetry than it is to write poetry. If I could just get away with having my job, just be reading other people's work all day, I would absolutely 1000% sign up to do that. That is so much more fun for me, is getting to hear other people's stories. That's really where my heart is even more than in my own work and in putting out my own work. It's more about getting to share space with other people, on the page or otherwise.
[01:28:44] Speaker A: So, wrapping up the interview between us, I always ask in case there are inspiring poets, inspiring advocates, self advocates who want to get more involved in writing or performing or advocacy, what would be some action steps pieces of advice you would give them?
[01:29:22] Speaker B: I think the most valuable piece of advice I was given, and this is typically a writing thing, but I think it's actually really valuable. Even if you don't consider yourself to be a writer or an artist, have place where you write, keep with you, you think that you're going to be able to remember all of your ideas.
You're really not. So have a tangible place. And that can be the notes app on your phone. I use a journal. I use like an analog paper and pen journal that I keep with me in my purse.
But, you know, whatever works for you, which is another piece of this. Don't be afraid to do what works for you. You're going to get a lot of really prescriptive, like, you have to do this if you're going to be a writer or an advocate or what. You don't have to do anything. Find your own way. Take other people's advice, definitely, but find your own way to work with it. I was told for a very long time that I should be writing every day, which I actually agree with. I'm too disabled to actually a long time to be able to actionalize. That's not a word. But to actualize that, because the way that I was getting it was from able bodied people, and I was like, that's great that you can sit down and write every single day. That's wonderful that you could do that. I don't really think that that's going to work for me. And it took me a long time to sort of mold that advice to make it into something that I. That worked for me specifically. I write 200 words every day. That's a number that's very comfortable for me. That's a couple of lines. That's, you know, that's a comfortable number for me. Maybe that's not going to be a comfortable number for you. So my advice, for advocacy or for creation, take other people's advice. Definitely don't think that you have the answers, but you do have the answers about your own body and your own experience. So if you get some advice and you're kind of like, I don't know about that, keep it muffled around your head. You know, as an editor, I always say to my clients, give yourself time to be mad at me, because even though you're paying me, you're going to get your book back and it's going to be covered in red marks like shit. It always feels like shit. I've been on both sides of the desk. It's never not going to be hard because that's your baby. That's your, like, soft, white underbelly that you're showing. It's like your dog rolling over on her back and showing you her belly. That. That's the feeling when you submit your book, you know, it's like somebody's really showing you their belly and, you know, it's really scary that someone's going to make comments on that. Now, even if you paid for the comments you made and even if it's someone that you trust deeply to make comments, you know, your friend who you collaborated with, trusted you to and, but even still, you need time to be like, God, no, that person is totally wrong. Like that. That person doesn't get it. Eventually you will come to see what of that you can take. I don't take every comment that my editor makes. My clients don't take every comment that I make. You know you do. But you need to give yourself time to feel that and to be like, oh, I don't know, that hurts. That doesn't feel good because it doesn't feel good to take your work to the next level. It doesn't feel good, as an advocate, to be called in and to be told maybe you could be doing something a different way. That's painful stuff. And the fact that you want to do it is amazing because not everybody wants to do it. Not everybody has the ability to hear other people what they could be doing differently. So let yourself feel the pain.
Carry a writing face around with you for your ideas because you will forget them. And don't be afraid to, like, listen to other people. And then don't be afraid to ignore other people. That's a really weird, like, I'm saying two different things, but the balance between that, between learning when to listen and learning when to go, yeah, I don't know. That doesn't really feel like me. That doesn't really feel like what I want to do.
That's also tremendous. And also my other thing, and this is advice I have to give to myself, too. Don't be afraid to rest and watch tv. Like, really, you know, real hard out there. I know we all feel like we have to be working time. I know, especially for me, I feel like I need to be putting in hardcore days, real 18 hours days, but don't be afraid to lay down and watch tv and eat junk food. That's how you get back to doing the thing that you. That you need to be doing. Don't be afraid to rest and watch Buffy the vampire slayer. Definitely. And tell me about it. If you watch it and you decide to.
[01:34:17] Speaker A: We've covered so much in this episode, and I'm sure we could easily make a trilogy by just talking that. To go back to the trilogy of poetry books, I need to leave my assistance on that.
[01:34:41] Speaker B: Please don't hesitate to reach out to me if you need somebody to help you get those books, you know, into a format, you know, no pressure. But what, you know, if you feel that that would be something that, you know.
[01:34:54] Speaker A: So we've talked about so much, I would like to think that. Did you? World advocates and temporarily able bodied people.
Legends to Vids podcasts are now warshed.
Season four is the first eventual season where we are bold, so I wouldn't assume that both groups will take away the same things from their I episode. So, as my guests, what do you hope that people with disabilities, advocates, mutual friends, etcetera, take away from everything we've talked about? And what do you hope that temporarily able bodied people who haven't discovered and embraced their own disability take away from everything we've talked about?
[01:36:20] Speaker B: For my disabled compatriots, for my disabled family, tell your story however you want to do that, however you feel. Feel that's accessible to you. Talk about your experiences, because it's valuable and people want to hear it, and you deserve it. That's what I really want to say, is you deserve to tell your story, because for so long, I didn't think that I deserve to tell the truth. And we deserve it. We deserve to tell the truth. And for my temporarily non disabled compatriots, don't be afraid. You know, don't be afraid of your own body. It is going to deteriorate. It is going to change. That's just life. You're still you. You're still essentially who you are, and you still have shows and favorite music and foods that you love. And, you know, if anything happens to your body or your mind and it really feels like you're a different person, that's okay. That's really okay. You don't need to be afraid. It's gonna, you know, you're gonna find people who are gonna embrace you in the new iteration of yourself, but you're still gonna be yourself, and there's nothing to be afraid of about our bodies changing. That's what they do. And I think in our culture, we don't want to discuss that. So somebody is telling you it's going to happen. I really hate to be the one to tell you this, you know, I don't care if, like, you're on paleo or whatever thing you think you're doing that's going to keep you immortal. Your body's going to change. I'm so sorry to be the one to let you know, but that's okay. That's okay. It'll be all right, man.
Really. And it changes for us, too. Like, I wish somebody had told me that, you know, disabled people age, too. I kind of assumed that once you. You were disabled, if you were born disabled, that was, like, your thing, and you had your body and you had to deal with your body, you know, as it was, we changed.
[01:38:19] Speaker A: The most annoying assumption that I get from people, and I've shared this with several of our compadres with cerebral palsy, is there are two. One, you mean you didn't grow out of your cerebral palsy when you.
When you grew older?
That's not how anything was.
[01:38:54] Speaker B: They tell us that that's gonna happen too.
They tell us, like, it's weird because it's, like a subliminal message, but the doctors really, like, they made me think that that was what was gonna happen. They really made me think that once I turned 18, I was gonna be fine. It was like, I can't believe I believed you guys. Like, wow.
[01:39:14] Speaker A: Yeah, no, and the other one, which is more personal due to a speech impediment. And if you take that away, you would have to be a medical doctor to know I have cerebral palsy. It's just that, uh, outwardly with the voids, uh, people always think I'm drunk, high or not, right in the head. And it's like, seriously? This is the accent.
[01:40:00] Speaker B: This is the accent.
[01:40:03] Speaker A: And the third one that really annoys me is it's not contagious.
My future kids, if I'm lucky to have kids, will not inherit cerebral. Told you.
[01:40:24] Speaker B: This is why I said, don't be afraid. Because what I've. What I finally figured out is that these interactions that we have, these ridiculous interactions where people ask these questions of us, you know, and always just random strangers, right? It's like, you know, like, some woman comes up to you and asks you about your kids or whatever, and it's like, ma'am, I'm in the grocery store. Like, it's the. It's the most just ridiculous thing that's all motivated by fear, you know? That's all motivated by, like, can I become like you? And the answer is, you can. You're eventually gonna get old, and your body is going to shift and change, and you are gonna. Maybe you won't be exactly like me. You're not gonna wake up tomorrow and have cp, but you are gonna be a different person than you were a decade ago. And that's why I'm saying don't be afraid, because the fear is what motivates these really awkward interactions that we don't want to have with you. Okay.
[01:41:20] Speaker A: No, it's like, I do not want to talk about my intimate life of the cop. It's like, what? I mean, thank you for having the courage to actually come up and add something, but that's not the question you.
[01:41:49] Speaker B: Want to be discussing, especially if I don't know you. If I've never met you, why would I? The other thing, too, like, I'm a New Yorker. We don't talk to each other in public. You know, like, people in New York, we don't discuss things on the street. If you wouldn't say it to a temporarily non disabled person, say it to a disabled person, please. If you really, like, run it through. Just run it through your head a little bit. I don't want to. Like, the weirdest ones for me are the ones where random people will just see you on the street and say things like, you're doing a great job. And it's like, what? Why are you doing. Thank you so much, but you have no idea what I'm doing, what I'm doing to get here. Like, thanks a lot, but you have no idea what my capabilities are. I have a master's degree.
[01:42:35] Speaker A: I could be heading to chop left on still alcohol. You have no idea I'm going to commit a crime.
[01:42:46] Speaker B: You have no idea, no clue what's happening. Yeah. So that's why I'm saying to my. To my able bodied friends and loved ones, don't be afraid. Because I understand that all that weird shit that you guys say on the. To me is all motivated by fear.
Work on it a little bit.
[01:43:06] Speaker A: But, see, I would much rather someone come up to me and ask me about my voice rather than assume that I'm drunk, that I'm high, that I might note, I all be there. And there are several different arenas you can go with that assumption. But, like, I'm a disabled advocate. That's my prevention. This is actually my job. If I cannot talk about my disability, I'm gonna be shite at my job, and no one is gonna take me seriously. You're self included. And so I'm always aware of that. And it's like there's, like, in wrong questions to ask.
[01:44:21] Speaker B: Yeah, yeah.
[01:44:23] Speaker A: People wouldn't be afraid to act.
Maybe not the why do you talk this way but inquire about the ad nicity of my family to go into you that way or whatever. Instead of can you date?
[01:44:50] Speaker B: Do you date? Yeah, the dating. We didn't touch on the dating thing. We'll have to save the dating thing for part two because yeah, you know that that goes into what you were asking me about what what it's like to be a woman with CP. But the dating thing is really where.
[01:45:05] Speaker A: I find that I didn't mean to go that personal age, not impart one or even part three kids part three. It's gonna happen, folks. I've skipped over part two and jumped to part three. But Liv, it's such a honor to finally know you and put a phase and voids to the actual post I'd see every time I get on Facebook, which if not for the podcast, it's in that much, to be honest. But you always post authentication, play your very real and down to earth about your disability, about your writing, about your pageants, your honor, your unchained lids with your love for fandoms. And it's such a it's been such a pleasure to finally get to know you and have your name not just be a name, but an actual person. And so thank you for coming on and sharing so much of your story in draw part to my friend.
[01:46:46] Speaker B: Thank you so much. This has been such a pleasure and I hope we get to do it again soon. I'm going to do a couple of little plugs on the way out in case anybody wants to connect with me. After you hear this podcast, my publisher is gameoverbooks.com.
you can go check out all of our work. I'm at livmamonepalms.com, so if you want to check out some of the poems that I published online, you can read those there. You can find the pre order link for the book, which is coming out next year. You can see all any events that I might be doing, but the easiest way to know what I'm doing is to, as was said, follow me on Facebook. Because I love Facebook. If you want to follow me at Live Malone on Facebook, that's where you're getting all that my hot takes about Buffy the vampire Slayer and what it's like to be disabled. So if you like any of the stuff that you heard here, you can follow me there, you can follow me on Instagram mamon live.
Yeah, really reach out to me. Reach out to me. Let's connect.
I loved connecting here today and I hope that your listeners will feel comfortable to connect with me in some other fashion because I love connecting with people. And thank you so much. This was incredible.
[01:48:15] Speaker A: You have been listening to digibility empowerment. Now I would like to thank my guests, you, Olitzina, and the digability empowerment team that made this episode possible.
More information about the podesthe can be
[email protected] or on our social media accessibility empowerment now the podcast is available wherever you listen to. Podcats are on the official website. Don't forget to rate, comment, and share the podcast. This episode of Disability Empowerment knowledge copyrighted 2024.
