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E38: “Bent But Not Broken” with Paige Fraser

November 30th 2020
In this episode, Marybeth & Marcia sit down with Paige of the Paige Fraser foundation to discuss all things scoliosis advocacy. Paige shares a few perspectives and stories of how different bodies move... More
this is disabled girls who lift. We are reclaiming what's rightfully ours. One podcast at a time, it's mary Beth Chloe and Marcia bringing you the thoughts and unpopular topics to get you out of that. A bliss comfort zone. Okay. Hello everyone. Welcome to another episode of disabled girls who lift and today also dance. This is Marcia from south florida, land of the Seminoles. Hey, it's mary beth from California, Ohlone island, so so grateful. Um, we've got a guest joining us today. I know you all miss our guests. It's been a little while but we are an absolute huge fan of paige fraser. She is a professional dancer, musical theater, actor, scoliosis, warrior and advocate and of course the founder of the page fraser Foundation, which we'll talk a little bit about come in from Chicago Illinois's traditional homelands of the Council of the Three fires Welcome page.

Thank you so much. Hey, thanks for having me. Yeah, we're really glad to have you on uh, did you make a movie or something, didn't you? Yes. So basically in the beginning of the pandemic, um going into the month of june, it was scoliosis month and I had the idea to put together a short, more so a documentary style film highlighting scoliosis warriors. Uh, and this would be a film that I wanted to present for scoliosis months. So I pulled it together. I was researching and just reaching out to people and seeing who would want to be a part of it. I know two professional dancers who has scoliosis that inspire me from afar Jacqueline Greene who is in Alvin Ailey american dance theater and beckons Sisk who is in Ballet West. So it was really, really cool to interview them and find out more about their experience of scoliosis because the thing about this condition, it's so different per person and the experience and what, how it feels and how people are able to dance with it.

It's not the same as how it feels for me. So it was really cool to hear their experiences and how they pushed through. And during the editing process I was talking to the videographer who helped me put this together which by the way it was all done virtual. So yes, so I asked a close friend of mine, rena Butler, she's a choreographer and dancer to make a phrase to make a dance phrase. And she sent it to each of us. Uh we learned it, we put our own interpretation to it. And we filmed ourselves just dancing it whether that be outside. Um If you watch the video you'll see, I'm dancing in my back alley, making it work in the middle of a pandemic. And I think that was one of the things that I wanted to rather resonate with people is the fact that we are in this situation, but we're still able to move our bodies. And and still able to collaborate and come together.

Um and it was really important to me that the choreographer be a woman and a woman of color. So yes, thank you, rena Butler. Uhm She gave us some great steps which I am still in the process of like putting this together. But I'd love for this film too. Come to life in another way. Hopefully next year. Um it can be something that is live and something that people can enjoy and we can build upon. But yeah, the film is called bent but not broken. And in addition to the short excerpt that you see of us three professionals dancing in the beginning, there's a montage highlighting about 10 other scoliosis warriors who dance and these dancers are from all over the world, different ages. I was sitting in the park one day and was like something's missing from this film and that's what it was. I wanted to also highlight.

The answer is that people may not know of, you know, and give them a chance to just kind of share and feel connected and feel embraced and feel recognized because I think dancing with scoliosis is something that's not talked about enough scoliosis in general has not talked about enough. So that was the purpose of how did you find them? Um, the internet um that some young dancers that follow me that have reached out. Um, and then I also made a post on there is like a scoliosis facebook group and I got a lot of messages saying I would like to be a part of it. So it's really cool to, to see the turnout and the support um that I got and this was my first film that I've ever created and directed, especially in this way. It was like, I was just praying that it all came together because again, none of us were in the same space, so that's pretty wild. That sounds pretty cool.

Are you going to try to put it into any of these film festivals or whatever, because you could just submit your film wherever, Right? Yes. So I actually have tried, I'm waiting to hear back from some, um, but my film actually caught the attention of Martha Hunt who was a supermodel. She was with victoria's secrets. Um, and she's a scoliosis advocate. So if anything like that really like made me so excited. Just the fact that, and the beauty of social media, uh, when when done right. And like when you have a genuine message, the fact that like she reached out to me and we actually had a conversation uh, during scoliosis month that was on her instagram live and the film just got so much love and so much respect. So whether or not I get into a film festival, I think it's still doing, you know what it needed to and it's reaching the people, um that it needs to and what I wanted.

I wanted it to be timeless in a way that next june I can also re share, you know, hopefully we won't be in a pandemic anymore, but we'll see, we'll see. But I was going to say that's absolutely beautiful because like through this pandemic we know that you know among everybody kind of going through it right now, actors, dancers, artists of all kinds are suffering because we rely on, you know, audiences gathering, live our live performances and the fact that you were able to put something together virtually for all these amazing professional dancers yourself included. And then what whipped out a documentary like that's freaking awesome. Thank you. It was, it was cool. Um it definitely had some challenges because again, I was working with a videographer who lives in Louisville, um shout out to tanner.

So like going back and forth with like what I liked, what did, what didn't work, um not you know, having enough material, so having to request more from the dancers. It was a lot of like back and forth, which was a bit stressful. I think we take advantage of being in a room with people. Um but it just taught me how to sharpen my communication skills if I'm ever back in this position because I do love creating and I have a lot of ideas. Um and as I said, like part three of the film, I would love to bring backhand myself, Jacqueline Green and the choreographer rena Butler, I'd love to create something in the studio, like three different bodies that have scoliosis and just to really amplify our voices um as dancers and advocates actually meet in person for the first time. Marcie and I have never met in person.

It's I've met, I've met Jacqueline and I I know rena I've never met backhand. Um so that will be really cool and she's such a beautiful, she's like a ballerina, ballerina. So um it'll be really beautiful to like see how we all move in in the space, um because we have different backgrounds and have done different things, so, and also my fiancee did the music throughout the film. Yeah, it was really, really, it's a special project for sure that I hope can come back to life once we can enjoy live art again, you've got a full crew. All you need is a studio, the stage. Right. And how did you guys have time to talk about your experiences with each other? Or was it all just let's make this um let's make this thing, Or did you have time on the side to kind of talk to each other about growing up or dancing and moving?

Yeah, so I interviewed them in the beginning to just kind of get a feel of that. And then the film Was actually shared by the 92nd Street Y they shared it in their film festival. Um and we did a zoom like interview with the 92nd Street while and I was able to learn more about Jackie and beckon through that as well. So yeah, I mean there's definitely more questions I have, but it's it's really cool to see three of us. We've, we've never had the surgery and we've still been able to dance. And for me, what was really cool was like there's a part in the film where I asked them to share their warm up, um or like body conditioning practice and Jackie had a few exercises that were new to me. So I was able to text her and like ask her, what does this do, what does this help with?

Because like a common thing with scoliosis, it makes your neck really tight. So she was doing a few exercises that like I was really interested in. So yeah, it was a learning experience for me as well. Um, to just remember that I'm not alone in this. Um, and I think also for people who see the film and who are hopefully drawn to research more about the page fraser foundation. Um, they can now go on our website and see like a list of scoliosis advocates and know that these people are people that they can get in touch with and they can ask questions and I think that's what's so important and that's what I wanted to do through this film is like remind people that you are not alone. There's so many of us out here with this condition and all you have to do is ask, you know? Yeah. And there's definitely something about it just, I mean everyone has different experiences. So it's not to say that just because someone has a disability, we're like BFFs.

But I mean, but more often than not you meet somebody and they're like, oh man, my man, I don't have enough spoons today. And they're like, what do you say girl? And then you're like, oh, you call yourself spoon. Oh yeah, me too. And the next thing, you know, it's like two hours later you guys just went over like your whole life story because there was nobody else you can talk to because your boyfriend didn't get it. Your mom thinks doesn't think that it doesn't believe you and your doctor thing. You know, like when you find that person that just gets it. Uh huh. Oh yeah, It makes a world of a difference because it's like after a while the people around you like your loved ones, they've heard about it so much. And you're like, I just need to talk to someone who actually has this condition and like, who knows what I'm like, you know, the experiences we have, the pain, the, like just everything that you go through on a daily, monthly weekly basis. So, um, I know I've enjoyed like using social media for that and seeing how many people are now coming up and speaking openly about having scoliosis.

It's really been beautiful to see. And not to mention like finding someone also or finding multiple people that are doing the same activities as you because we time and time again, you're from doctors. Well you're not allowed to power lift, You've got to bring you back, you're not allowed to dance, You can't be like you can't go into sports being artists but here we are, proving them wrong. It's I find myself as an advocate and like sharing my story openly for many, many years. I find myself in situations now where I am asked to like can you dance at this gala or can you speak for this foundation or can we interview you? And it's so interesting because a lot of these foundations and organizations um promote and advocate for surgery and here I am with like a pretty severe, very severe curvature um and I'm being asked to like speak or dance and you know, I think I'm showing people that like there's many different ways to deal with this condition um and I really do feel that that is my purpose one of them.

Um while here on earth is like to really talk about like My process which is still evolving. You know, I've had scoliosis for 16 years and now as I Turn 30, it's like I realized like I have to Have a different regimen than I did when I was 18, I could just get up and jump out the bed, drop it, drop into a slip. Alright, so he's learning how to listen to my body knowing when I need to get a massage, knowing when I need to, you know, have physical therapy visits more frequently. Like really listening to my body and taking the necessary steps to prevent injury. Um but it's just so like interesting that these foundations embrace me and asked me to be an ambassador and I'm like, just so you guys know I did not have surgery and they were like, that's fine.

You know, they they're starting to they're starting to see that like um surgery is not the only um solution. You know, they're more open to the slow, slow shift and it's it's not just to scoliosis either. It's like in general when something is out of place or missing people just want to fix it and it's like but why? But why are you fixing it? Are you actually helping me or you just want me to look quote unquote normal? You know, like there will be things like that, that make no sense to me. I'll have tons of kids that maybe they'll never do this or that. And their doctors already like, oh yeah, so we're going to do a surgery for what? Or how many people like mary beth were handed a prosthetic? Like, oh you're missing a hand. Here's a hand. I don't need this. Like we're so stuck. Like you're broken. Must fisk fix you fix you. Mm But that's the thing too is like, as I've gotten older, it's like, okay if I get the spinal fusion surgery right after the surgery, I'm still going to have to do everything I'm now doing.

I'm still going to have to go to physical therapy. I'm still going to have to have a lifelong regimen of movement of um just therapy of everything that I'm thinking about how you're still gonna have pain. And it's like, so I'd rather be quote unquote crooked or a little off or different. Um If that means that as long as where I'm at in my life and my career, as long as I feel good, right? As long as I am not experiencing daily pain. As long as I'm able to show up and take a dance class or show up and do my job, which was the lion king prior. The pandemic. Like for me, those are the things that I care most about versus like looking, having great spine and looking normal. Um, So you guys can't see it, we put air close to me saying normal.

You know, somebody asked me a question actually, I'm gonna ask you guys. So they asked me the question that when we talk about normal or abnormal disabled, not disabled, I mean disability as an identity. That's a conversation on its own. But just the fact of they were asking like, should I say normal and people are normal and people aren't normal. Should I say that people are, you're a typical and neuro diversion, should you even say it? Because then you're creating the other ring. And my answer was like, honestly, I don't know because most people don't know that there is another That's a great question, right? I don't know. What do you guys think about that? Well, I mean, I've just been loving and I love hearing this out loud time and time again and I forget that outside of this podcast, people don't have this conversation, but like in the recent years, you know, in the recent decade, we have been normalizing this otherness. We've been normalizing um are disabilities on I mean, we're working on it on the big screen on the stages in modeling shoots, you know, you're seeing a lot more of us and thinking back to our childhood days when doctors wanted to fix us.

We weren't considered normal in the physician's eyes. So, like, the fact that we're constantly trying to change this framework and this language through it all has been so healing for us as adults that hopefully kids, you know, that see us that our limb different. I have scoliosis that are going through like so much pain right now, I don't want to like change who they are because of what the majority looks like because we've been surviving and thriving. Yeah. To add to that there's an organization which will remain anonymous, but they they and I'm sure many when describing scoliosis, they use the word deformity right? Which when you think of it it is a deformity of the spine. But I think now with the empowerment and the advocacy and everything that's happening for those of us with this conditioning which is beautiful, people are offended and they don't want to be labeled as deformed, right?

They see that and they're like I'm not deformed and I meet paige. I know I'm not deformed either, but we have to be so sensitive with the words we use because That really just stirred up a whole bunch of emotions for a lot of people. Um and I'm able to kind of see it from both sides because in a medical way it's like this is a deformity of the spine, right? Um the spine is not straight. But it's also like now in 2020 there has to be different ways of um expressing the pressing. Yeah. Languages of both. Like we got a lot of words we can use. Exactly. So um you know, it's definitely a time of change and a time of just being more um empathetic for having more empathy for those of us that our again quote unquote different. But no that makes sense to and even when I see people that have had foot surgeries or this and that that's that is the word that they'll use to say, oh well I have this in this deformity or and that will make you feel some type of way because you think deformed you think of like a freak show, you know, you think of something like that, which is just not a good, look, there's so many words we can use.

Exactly. Or like when people say like, how long have you suffered from scoliosis? Yeah, Syria is going to be worth this in the interview, right? I know, I know you didn't mean anything but like suffered. I wouldn't, I wouldn't say I've suffered. Um you know, it's just like anyone if you have a toothache, like despite her tooth cake, she overcame the suffering and brushed her teeth. Like Exactly. I think about the amount of times that I've, I've experienced pain and I wouldn't even say like for me, a lot of the times the pain I'm feeling is soreness from dance. Like crazy things we do. We all experience exactly. You experience that if you go to the gym and lift weight, but you say you're suffering because you went to the gym, you know? So yeah, words are so important and yeah, that's just something I wanted to share because it's like things are evolving.

We need to be way more mindful um and just empathetic, but but it's good you bring up that specific word deformity because you know, as limb different people, We think about that all the time. That's literally on my physician's notes and if I have to prove to someone that I have a disability, that's what I show them. It's the deformity of the hand. Um, but like the difference between the medical term and the identity I think is what people need to understand. We don't identify as being deformed human beings and that's kind of why disability I think had such a bad word in in the beginning. It's wrapped up in all of them. Exactly. And like same with mental retardation. You know, that is the, um, that's, that's the scientific term for it. But the way that people use it in everyday society as like a, as an insult.

Oh God, you're so deformed. Oh God, you're retarded. Like they're not using it in the appropriate way. But I wonder if it'll change negative maybe change because they changed retardation now. They call it cognitive impairment. Mm hmm. So maybe it'll change, Who knows? Yeah, I don't know, Some stuffy white dudes in the room get to decide until, until the age out. I think there's just still like so much work to be done when it, when it comes to scoliosis as a condition, why it affects women more than men. Why Like Surgery is the first thing that is told to people like I was diagnosed at 13, I went in got a, you know, a regular physical was told that there was a slight hump on my back. Got an X ray. It was just very much like, boom boom boom.

Like it's happening so fast and I'm in the doctors room with, with a surgeon and he's just explaining to us that like, well this is a severe curvature over time it could get worse and I would recommend surgery. There was no other explanation of like really what it was, um, things that I'm now discovered as I've done research as like, oh, how the nervous system is so connected to scoliosis and how deep breathing massage. Um, anything that is coming to the nervous system will have a positive effect or can I should say, because every case is different but can have a positive effect on the spine. Um, but none of this was explained to us in the beginning, You know, it's like surgery or figure it out. And thankfully my parents, you know, we're able to find, we found a chiropractor and I wore a back brace and had to go through all of that while I was still growing and my spine stabilized.

But again, it's like now I'm so grateful that there's more of us out there speaking about openly about it because for a while it was something that people were ashamed of. You know, you don't want to be known as a hunchback, right? Which is awful. But it's like that's, we aren't that, you know, and I don't know, I think once I started realizing that it just made me more unique and the incredible opportunities it's given me like just even meaning you guys. But you know, I've been able to perform for the, for the former mayor, his daughter has had scoliosis, I've met incredible people and just, it it's again, all how you look at it, the perspective. Um, but I do want to encourage many surgeon is listening to this, you know, like how you speak to your patients matters. Um, and the information you give them is very important because um for a while I didn't even think I would be able to dance because I was just such, I was in such a down and and low place.

Um being a teenager just going through this. So you were dancing before this official diagnosis? Yes. So I started dancing when I was four, um and nothing, no pain, a regular life as a kid. And again, I just went in for a physical, I was 12 going on 13 years old. Um and I've been dancing, I was in a ballet studio, I really wanted to be a ballerina. Um And yeah, I for high school that was when I went to Alvin Ailey and I was in there performing arts high school program and it was then my freshman year as I'm like learning these various styles of movement because for those that don't know ballet is very different than modern dance. Um so I was transitioning to a whole new style in different ways of moving.

I was taking african jazz. Um you name it and then I'm told that I have this condition and many, many months of just sadness, you know, and fear and frustration and why me and you know, just realizing that I would have to work even harder to just accomplish the simplest things that my classmates could do with their eyes closed. Um because essentially scoliosis affects your alignment, it's your spine. So you're asking me to stand on one leg, There's so many micro adjustments that need to happen for me to accomplish that. You know, it's like rib to the left, um, left him down. Like there's just so many other things I'm thinking about constantly. Um, so as you can imagine, that was this extremely frustrating. Uh, but I would say God was looking out because the director of the high school program that I attended at a li she had scoliosis who her in the front of the room was just like, you know, um because I was still growing, my scoliosis wasn't as I'm a parent, but I had to come to terms with it, I had to tell my teachers and let them know that as I was growing these things this was happening, you know, my body was going to change and and present some challenges.

Um as a dancer. Yeah. And that's absolutely important to to have those leaders, like showing you that it can be done because they have so much control over these youths future that like I've heard, I've heard in many sports that once a coach found out that somebody had a disability they're out of the team you know. Same with dance, you get the same thing that you're going to like you get this idea that you're going to hold the rest of the team back and behind and you're going to get an injury and we're going to be liable. But even MS collier's this thing is like I remember that in like seventh grade they took you to the gym and it was like a school wide we're going to screen everyone for scoliosis and everybody is in the gym and like line by line all right bend over and it was like a whole day long and you were just like hoping you didn't get it because it was gonna be so bad and then you have to sit out of P. E. And like they already set you up to be afraid of something that we've never even heard of before that day and not to mention the embarrassment of these poor kids finding out in front of the rest of the school like that's fun.

Uh Remember? Yeah it was just like curtains just a line alright next bend over. Uh you have it all right stay over here in this one or next okay. Uh wow. Yeah luckily my school didn't do that. Um Yeah I don't know that was a thing. Yeah and I've heard about that being a thing. Um But no mine mine was very private. It was just with my doctor and then of course the surgeon and I have to give so much love and appreciation to my parents because they were by my side through it all and my dad was like, no, she's still growing, we're not gonna do surgery right now, we need to see how and if this progresses and if it does progress, is it causing her pain? Is it causing shortness of breath? How is it affecting her organs? All these things they wanted to make sure they couldn't monitor as I was growing. Are your parents in a medical background?

No, my dad is just really into health and like therapy and just natural ways to cure anything you're going through. Um And we've had several relatives who've had surgery and it just wasn't um something he wanted for me. So yeah, just for him and their patients because again, like after being diagnosed, I was fitted for a back brace. So I had to wear two different back braces. Um One when I was at school and one when I slept. Um so talk about extremely uncomfortable. Um It's basically like shoving your rib the other direction of where gravity wants you to be. So, with, with my scoliosis, my my torso sits out to the right a bit. So it's like just having something so like strong and like, I don't even know the worst way to describe a very unpleasant feeling and you're like in school sitting like it's almost over correcting you, right?

So you're taking tests and you're learning in this awful contraption. I don't care what anyone says. It is not, you know, so for me, like the only time I felt free was when I was able to dance because I took it off. Um, but then that presented challenges because you're all day you're locked in this position and then you're being told to move and isolate your rib cage. It's like, how do I do that? Like, I feel so sick. Like, um, but you know, again shout out to my parents because they took me to those doctors appointments and my dad after work took me to my chiropractor appointments and it's just like as a kid, you don't really realize it. But I look back and it's like, man, they really were by my side, um, during a very, very difficult time in my adolescence. Um, and you know, I really appreciate everything they did for me. Yeah.

So shout out to my shout out to the ranch for real because it could go either way man. So I mean, especially as um, like black people in America at least if you're from here, you're not from immigrant background, like you already don't trust doctors. So then you can have that or they just don't want to take you at all. Or it could be the opposite where it's like, oh, geez surgery, whatever you say sir, we got to do this. You know, like there's so many extremes of where that could have gone right? Absolutely. And the, and the financial commitment to because like, yeah, they had, sir, I'm sorry. Yeah. They had insurance. Yeah. But it's not cheap going to a chiropractor weekly. It's not, this is America it's hard for everything you still have to pay. It's like a discount club. It's not so, yeah, I mean your parents definitely have the patients, but they're also just so open minded and you think about all these ablest parents still coming out and like making sure that they do all these scans and x rays before the child is born and make sure their child is not quote unquote deformed, disabled.

You know, like all these nasty words that are coming out while the mom is pregnant. Like even even so appreciative of your parents, even these babies. There's so many parents that I'm like, why? Why are they telling you this? Why would you do that surgery? For what? Right. For what? And the end. They'll just tell and that people have no thought and it's even to this day, I mean, I just graduated from school What? six years ago when I, when I was in school, I wasn't taught really scoliosis okay. If it's this number, they get surgery the end next to Jesus. In PT school. Yeah, dry dry and they're going to have imbalances and you work on it. But once you hit this number surgery at the end next and that's why you're the physical therapist, wow. You've never talked about, they never talked about like, oh, well you might encounter somebody that's lifelong scoliosis, then they'll never have surgery and they're fine. Like, okay, well let's change that book and that and that's what is so upsetting because it's like, it's the reality.

Um, and I'm trying my best to like, spread my truth in my experience. I do, you know, I do want to say there are cases that absolutely do need surgery. There are cases where that are maybe less severe than mine, but it's affecting their breathing, it's affecting chronic pain every single day. Like there are different situations, but to just write it off as yeah, all wrong. You got ask the right questions definitely at that moment. And I mean thinking back to when you were a child. Um, did you feel at the moment, like that was a good decision. Do you feel like you had a choice in making that? Oh, I absolutely felt I didn't want surgery either. That's that, that was as much as it was, my parents decision, it was also mine. Um, I know I didn't want surgery. I wanted to become a professional dancer and the way he described the surgery to me, it was like, and how is this going to help?

Like, again, it's like, yes, you're putting rods and screws in my back to straighten me out but I won't be able to bend, I won't be able to like I twist the wrong way. Like how did you help me by making me stuck? There are some you know there are some people that are like I feel fine after my surgery and again it's just so many different variables. But for someone who lived most of their life moving to then be told like this will will restrict you in different ways. Yeah. So we both we all made the right decision. Yeah. Well well well some of them are so dishonest too. That's the other scary. I don't know what the money it's about Lord a man. They trying to pump it out there trying to get as much surgeries. Like there was one kid whose parent was like oh you know my daughter to the bad scoliosis and the doctor referred me to the sky and he said it's a non invasive procedure. What do you think?

So? I'm like first of all how you gonna fix somebody's bones non invasive as and you don't do like you don't cut anything. How? She's like oh it was something with magnets or something. I don't know. I was like okay that sounds I have heard about that. That sounds sketch but I looked it up. It's very invasive. The magnets go inside your body. They was like ma'am chill out. They are like trying to figure out a non invasive way or like less invasive, but I think that's going to take years. That wasn't, wasn't the fact there's actually like this new, I don't know how new it is, but I've been working on it with my therapist. It's like bio neurofeedback and it like calms the nervous system. And after one session I saw like so much relaxation in my rib cage, especially the areas where with school you have areas that just hold on because they're the compensating curves.

So they're just trying to like basically they hold you up, they make why I can walk. It's why I can dance. So this um it's almost like stem this machine uh just relaxes those muscles and allows you to just open up and elongate. So I definitely think science and medicine is on its way to figuring out less invasive once they shift from like we could treat this versus we have to fix this is like bingo. You just yeah, that's it. And that's where I'm at. I'm like, I'd rather treat this like if I Like God's willing if I'm on this earth till I'm 90 and I'm able to just treat it and and function. That's all I need. Exactly. No one is perfect. No, most of our bodies are not set up for success anyway. It's exactly, you know, you're like Bring me back to because I feel like from the 90s to the 2000s.

We've been going we've been having this like paradigm shift of you know, surgery and technology and all these crazy things, but like I remember I forgot if it was my uncle or my cousin asked me one day because it came up on the screen, it was probably on lifetime, but it wasn't true story of somebody attaching a cadaver's hand onto like a limb different. Um Nub is what some folks call it, I don't call it a nub. Um and we're like, whoa, would you be, would you be interested in that? I'm like you're putting a dead person's hand or sometimes even other limbs from a foot, you know, onto mine and why would I change the identity that I created which we called monkey, Monkey, my left hand. Um and then I'd lose nearly all like functionality of it and the functionality that I can think of is like um the movement of my wrists and everything else.

And then I could think of all the horror stories where, you know, the dead person's hand would just come back to life and like do its own thing and I don't know about that one, but now, but now it is actually like they've had those surgeries done um multiple times in the last few decades. I just can't imagine how that can be defined as a quote unquote fix for different, I don't know about that one, there's I mean there's some things out there that are really wild surgeries, but for the person that hasn't, it makes sense. But I don't know about a dead man hand. I don't know what that there's something else called a rotation plastic, which is pretty wild, but um they take your foot, like from your ankle joint and turn it around and your ankle joint becomes your knee okay, a much smaller knee.

But you can use it if you if you have the function of moving your foot, but you couldn't move your knee kind of thing, then you can use it as a knee and then what happens to your ankle? Yeah, it's your knee, you put a prosthetic on. Okay. Yeah, it's very interesting. So like, that is a wild surgery and I'm like, whoa, that sounds like a lot of work, but okay, well maybe you'll gain something from it, but then there's things like limb lengthening and I'm like, that just sounds painful. Is that that being the hip to lengthen the uh what do you mean by limb limb lengthening? And they do have these kids that might have like um dwarfism or something like that or whatever it is limb different sometimes. And if your child age, they literally break your bones over and over so that it will grow like they'll trick your bone into growing longer is kind of the way it works, but it gives you a few inches still stop, stop trying to make all of this look like 90s Barbie Dolls, you know, like we all know what I'm saying?

Like there are some wild, there are some wild techniques out there and some surgeries that they're thinking of and some of them, I'm like, no, I don't know about that one, that sounds painful. I'd love to hear from people that have had a limb lengthening as an adult because I've never met one. Yeah, it was so I also want to say like, always gets several, several, several opinions because for a while I thought like my left leg was much shorter than my right and it actually turned out it was just, it's whenever my sacrum is tilted, um that's when I have the leg length difference and once I started treating that I now don't have a leg discrepancy or leg difference. So it's all about just like finding people that will take the time and who care and will actually give you the information you need. So yeah, definitely get several opinions and don't allow just one opinion to just shatter your whole life or your experience.

Yeah, that's a good segue into your foundation, that you created the page fraser foundation and that like, it's so unique in that you are taking the time to help people through um, both dance and scoliosis, like you have back therapy sessions with them on top of dance workshops, You don't just like throw money at these dancers and say go fix it with surgery, you know, you are taking the time to tell us a little bit about that. Yes, so the page fraser foundation, it's a non profit, it was founded by myself and my aunt Lasmo fraser and one day we were just talking, I had reached a point in my career where I had received a lot of accolades and I never did dance for accolades, but it was a really nice feeling to feel and know that people appreciate my work and my artistry and I had an emotional phone call with my aunt and I was just like, I want to do more for the community.

Um, you know, what good are these accolades if you're not really giving back and I've always loved teaching dance to kids. I've gone to Haiti and Jamaica to teach. So it was just like a shoe in my, my aunt was very, very excited and she was like, we should create our own thing and it will be named after, you know, pressure. Right? So here we are. But yes, the foundation, our mission is to create a safe space for artists with or without disabilities. Um, I've learned a lot through this process because of course as a dancer, like I want everything to be, you know, dance dance dance and you know, something that my family and my aunt have opened my mind to see, it's like we can, through everything that you're doing and your story and what you're passionate about this can reach beyond dance. It can be writing, it can be music, it can be visual arts.

So we've definitely grown and expanded our mission to cover all those different avenues. Um and as of now we have two, I'm sorry, two programs, dances healing, which is a free dance workshop that we offer once a year and we had the inaugural event in the Bronx, which is where I was born and raised. It was really, really special for me to have it there. And I hired a bunch of my friends who were on broadway or who have danced with Beyonce and all these wonderful things that Nbd right? I had anyway, room like teaching or just there for the talk back session. So the Children could, these young dancers could just pick their brain and just hopefully be inspired. And again, it's a free workshop that we offer and actually during the pandemic, um I was starting to feel just really stiff and I was taking class, you know, dancing in your living room, doing the best you can, but my back was just extremely stiff.

It was the longest I had gone without getting a massage, an adjustment, any kind of treatment because when Covid dropped is like no one wanted to leave their house. Um and I thought about like the spine series, it just came to me and um what actually what was the catalyst for that is this is the first time as an artist, I had time, I had a moment and I was reaching out to people on instagram that may specialize in like yoga for scoliosis or Pilates or gira tonics, gyro kinesis, all these forms of therapy and body conditioning. I was reaching out to them and asking them questions in regards to my scoliosis. And then I thought about it was like, why don't I create a program through the page phrase of foundation that is also free and it is virtual and we can just offer it to those with or without spinal conditions because let's be real, everyone experiences back pain at some point in their life, right?

So I didn't want to um exclude anyone, but I did want this series to be for people with spinal conditions and we had such a great turnout, we had over 80 participants. Um, we offered four classes over zoom and I was like, well aren't going to want to come, it's on zoom and it was the complete opposite. Um, people from Egypt spain, like all over the world all got bad problems and then they came with questions and they were just like so interested and it was just beautiful to see like a community of those of us dealing with this. Um, and you know, maybe those that aren't experiencing pain, but they still showed up because they wanted to know how to prevent pain and wanted to learn more about scoliosis. So, you know, I had this one woman share her story. She, I think she was in her 70's and she said I have scoliosis and I've never had pain and it was just like, you know, people exist like they don't have pain from you are God.

Yes. So it was really, really beautiful to share and and meet these people virtually. And I'm looking forward to the next session. We're trying to decide if we want the spine series to be uh, twice a year or once year. Um but yeah, it was really, really awesome and I now have like a whole network of people all over the world that some people were still reaching out for advice and I'm able to, through the foundation, connect them with the instructors that I hired um because again, I am not trained in this, I have no degree or anything in how to treat scoliosis. I only know from life experience and from asking questions. Um so I'm able to now connect them with people who can give them a lesson or just give them feedback on how to manage pain. So that's awesome. And it's great that you recognize that like, okay, my skill isn't in actually providing the service for connecting people to the service because a lot of people don't have that level of self awareness, still just be like, I have scoliosis and this work for me pay me for classes, like it works for you.

Yeah, it's, yeah, you have to be so careful because if you give someone like there's an exercise I do, but that's for my curve pattern, that's for my, you know, and scoliosis is different per person. So how I lay on my left side is not how you may need to lay on your left side when you're doing a breathing exercise, you know, especially not scoliosis because you curve one way and then your body will curve the other way and that could be in different degrees in different places for some people. Um We had cassie on our other show and she said the way her curve is, is that if you look at her, she looks straight like it, like it evens itself out when it comes to the top, her shoulders and her hips, it's like there's no way that whatever you're doing is going to work the same in her body. Yeah, and that's the same for me. Pretty much. Like I recently got an X ray, my hips are square and my shoulders are square. It's literally like it's in the middle of the middle of my back. It's like, like a stop at a stop and of course there's like a small compensation in the low back, but to the average eye, if they didn't see the X ray, even looking at me now, like everything is pretty leveled.

Um but that's again, like I owe this to dance and movement which has inspired the name of my program dances healing. Like having an awareness of my body has just like helped me tremendously because it is a posture, it affects your posture, it affects how you're sitting. So all these things like you learn in in ballet at the age of four, like stand up, straight shoulders down, like I can't get that out of my head. So it's helped, it's definitely helping it. Like when I go in for therapy and I I know certain things and I'm able to challenge my teachers like just helping me or can we approach this a different way and you know again the more you can learn and just research about your condition, the better you are versus going into any space unsure, you can be unsure but what's a better word? Just not aware.

Like it's like we're stuck on on counting on someone else to answer the questions for and solve the problem for us. Like people can help you but you you gotta do it. You have to know it's like okay the X ray is showing this, what's my degree, where does my curve go? You know I have a 20 degree lumbar in a 55 degree thoracic. Great. Now with that information I can go to my dry Protonix or physical therapy or chiropractor and let them know like this is what I have going on. How can you help, how can we meet each other halfway. Um because you don't want someone telling you to do it and it makes it worse because that that that I think that that perspective shift. That makes a big difference in a lot of things. I know that's made a big difference for me and trying to find a diagnosis and trying to figure out because I still don't even have one and I'm still and I'm managing pretty okay. But because I'm doing those things like, okay, this is work for me now.

All right, Well, let me ask this question. Let me talk to this person. But there was a time where I was like, okay, this next doctor's appointment. I have Well, this guy is written as an expert. He'll have the answers and he'll fix me. Like, nah man, they don't know either. Like they know what's in front of them. And that's it. Another Thing we have to look at. two. Yeah. A lot of these doctors and therapists that specialize in spine. Our men, right? And it's like you have all these women coming to you with this condition. And to me like that's why all my therapists right now that as I've gotten older and I've like had more experienced my chiropractor's a woman. My giant tonics teacher is a woman. My floor bar teacher is a woman because a lot of times like there's just some things you women just understand, you know, and there's a different feeling. you get, I get at least when I talked to a woman or when I ask another woman who has scoliosis.

So I think that's also something that needs to change a bit. Um, I recently found on instagram a black female choreography, um sorry, chiropractor and I was so excited, I can't wait to meet her because wow, where has she been on my life? Someone that actually looks like me and it's like really into spine care. Like I would have loved to, you know, have her in my life as a teenager, but it is what it is, things are finally changing and evolving and we have the beauty of social media and zoom right now to connect with people that we may not have been able to. Um, and we've got applaud you for, for bringing together that community through dance is healing and just your foundation in general because even though you don't have that skill set, you're finding them solutions long term by connecting them through these experts and experts who, you know, and trust because as women of color, we don't have very many of those.

No, not at all, not the few and far between. We don't and it's just like some of these people I've taken like these instructors, I've taken class with virtually and it's big, it's come to the point where I can now just even facetime facetime them if I have a question and that's just what it should be like we need to lend a helping hand to others so that people don't have these like mental breakdowns and feel like they're going through this by themselves because you're really not out here. Yeah. And making it more accessible to because like you said, this costs so much money and not everybody has that privilege of health insurance or extra Cairo money. But if we find ways to like get those breathing drills down, get like certain movements, just movement period in, you could help save a life. Listen, I'm not kidding.

I know, I know. I just got these braids put in and I slept kind of funny the other night and I was like bosh my neck and I knew exactly what to do. Taking class with people who were like specialize in neck on pain. I was like able to do it at home for free and I felt safe doing it because I had resources and people, I could ask if there was something, you know, I didn't, I was unsure about. Um, so there's definitely like gems and there's ways to just take notes and have this information so that if you're not able to go to the doctors frequently, if you're not able to, you know, if you don't have a connection based like I hope through the spine series that people felt they were able to just learn as much as they could During those four, you know, four classes. Yeah. And through this podcast, I hope we can pick your brain a little bit after and take some notes of who it is that like your top five, your favorite five that we can recommend out to people that are local right now too because these people need work.

I mean even if you want to make it, it can be in any form to, we can share it as an instagram post or maybe we can make a blog resource. Yes, a little bit more on it. I would actually leave a blog resource would be great because it would be online and even more accessible, you know, for people. Um, because man, there's a lot of us out here. Yeah, we are now. Yeah, we're out here. That's right man. It's really, I'm really glad that we were able to come together and finally talk about how you're moving and scoliosis and all that good stuff. This is good. Real nice. And you know, another thing I've realized to, its there's not many people of color. We openly talk about having scoliosis and I come from a family of immigrants. Most of my family's from Jamaica and before that africa obviously, so it's like they came here to the States for a better life and to provide for their family.

And this is something that runs in my family. And I would often ask my, my mom, like didn't you notice that dad like kind of had like a little, you know, he was a little book it or did you notice anything? And they just say like, yeah, we noticed, but it wasn't something we paid attention to, you know, it's like, well, this is my purpose to bring awareness and to pay attention to it because again, the more, you know, the better off you are, you know, that's so funny because I have a similar, like, there's so many people in my family, like, oh yeah, you're onto seizures. Oh yeah, she always says like, some weird thing with her platelets, I don't know, but you know, how is your health going? And I'm just like, so y'all in Nobody, like, Oh, so and so died at 40, but you know, we didn't do autopsies in Haiti, we didn't have the money. Like, like it's, we're in a, in a place now where we have the space and like the safety to figure it out. So we got to and normalize talking about it. Exactly. You know?

So, yeah, no, I've only learned these things as an adult, as a child. They would never tell you that anybody was vulnerable, like, because it makes them feel comfortable to know that you're healthy and alive and well, you know, we can't tell them the bad things are also freak out because they need to fix you right away. You know? Like, why can't we just be open and honest about doing? It's always a secret and my dad, I will say he's not a dancer, he doesn't move, he has scoliosis and he has absolutely no pain from it, so again it's just like, what do you say to that? You know? Um he almost doesn't even talk about it because it does not affect his life, it does not, he does not have any kind of side effect and I will say I as much as I love moving and dancing and it's so important um a lot of the soreness that I experience is from dance, it's not necessarily from my scoliosis, so again, I want people to just always do research before you go under the knife and try different things before you go under the knife, thank you because even if you do get surgery later you're going to come out of it better if you were stronger anyway if you have an awareness.

So either way you'll come out of it better so you might as well figure it out. Um so real quick where can everybody? So we'll make a blog in the future. Sure, but for right now someone listening, they wanna open instagram or google right now, where are they going to find you? What should they look for? Um so I'm on instagram at loving this page. Also cute, thank you also the same on twitter and for the foundation it's at the page fraser foundation, we also have a facebook page paige fraser foundation, we have um some upcoming events, dances, healing will happen this year virtually on zoom and it is open for dancers with or without disabilities. Um so check out our website, the page fraser foundation dot org to register and To also just stay up to date with everything we have coming in 2021 Wow, I can't believe it.

Yeah and also just check out our website, we have a list of scoliosis advocates. I have my childhood chiropractor, he is on our board, he also specializes in meditation sessions um and tai chi sessions. What else do we have accessible right now? Yeah, you know what you're you're in some musicals, we gotta attack those two like thinking West side story, people can watch that are now um no they can't but they hopefully when we go back to the theater they can come see us. But yes right now I am, we're all furloughed from performing because of the pandemic but if you want to see me dance, I'm still active, I'm doing a lot of video projects and fun collaborations so just go to my instagram at loving this page and you'll see everything as it happens.

Love to see it. Beautiful Maple girls out. Thanks for listening to disabled girls who left, we appreciate all of your support and everyone who's taken the time to show us some. Love don't forget to subscribe rate already. Review of our channel, we're on apple podcasts, Spotify player FM, google podcasts and more. You can also find us on instagram at disabled girls who left? Yeah.

E38: “Bent But Not Broken” with Paige Fraser
E38: “Bent But Not Broken” with Paige Fraser
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