Disability, Body Neutrality and Community With Rebekah Taussig, Dr. BJ Miller, Gustavo Serafini #268
Our Guests Today
REBEKAH TAUSSIG, PH.D. is a Kansas City writer and teacher with her doctorate in Creative Nonfiction and Disability Studies. She has led workshops and presentations at the University of Michigan, University of Kansas, and Davidson College on disability representation, identity, and community. She also runs the Instagram platform@sitting_prettywhere she crafts “mini-memoirs” to contribute nuance to the collective narratives being told about disability in our culture. She lives in a tiny, old house with her fussy family of tender-hearted snugglers. Learn more about Rebekah and her work at:https://rebekahtaussig.com/
BJ Miller MD (Internal Medicine; Hospice & Palliative Medicine) founded Mettle Health, a consultation service here for you in sickness and in health, so you don’t need to be experiencing a crisis of care to benefit from a conversation. BJ has practiced and taught in all major settings: home, hospital, clinic, and residential care facility. In his work he draws upon his personal experiences with disability and his undergraduate studies in art history as much as his medical education. BJ speaks all over the country, and internationally, on the themes of living well in the face of illness and death. He has been profiled in the New York Times, interviewed by Oprah Winfrey, Tim Ferriss, and Krista Tippett and co-authored the book, A Beginner’s Guide to the End. Learn more about Mettle Health:https://www.mettlehealth.com/, follow BJ on Twitter at @bjmillermd
Gustavo Serafini is an entrepreneur and co-founder of Pure Audio Video, a company based in Fort Lauderdale, FL that specializes in designing and integrating home cinemas, automation and security systems for luxury homes. Originally from Brazil, Gustavo’s family moved to the States when he was still a baby. Born with proximal femoral focal deficiency (PFFD), Gustavo had to learn how to walk and live like other kids at a very young page. From studying buddhism to attending law school to leading a company as a successful entrepreneur today, Gustavo has many lessons learned and is excited to join this live chat. Learn more about Gustavo and his company, visit: https://www.pureaudiovideo.com/
Watch Our Interview
Group Interview With Rebekah Taussig, Dr. BJ Miller, Gustavo Serafini on Disability, Body Neutrality and Community – Powered by Happy Scribe
Feisworld podcast helps independent creators live their creative and financial freedom. I’m your host, Fei Wu, and I’ll be taking you through a series of interviews with creators from around the world who are living life on their own terms. Each episode is packed with tactics, nuggets you can implement origin stories to make listening productive and enjoyable. We’re not only focused on the more aspirational stories, but relatable ones as well. We also have none interview based miniseries releasing throughout the year to help Deep dove into topics such as freelancing, marketing, even indie filmmaking that would benefit creators like you.
Show notes, links and ways to connect with the guests are available on Feisworld.com. Now onto the show. Hi there, this is Fei Wu from Feisworld podcast. Hey, welcome and thank you so much for being here. I have a very special live stream episode, which I’m repurposing for the purpose of Feisworld. And if you’re listening to the show for the first time, welcome. I love having new listeners and the ability to connect with you guys on demand like this, you know, has been a dream come true since 2014.
So it’s been six years. Doesn’t matter, you know. Were you listening to this man? I feel so special I can’t quite explain it. And today I have more than one guest on the show. Their names are Rebecca Taussig, Dr. B.J. Miller, Gustavo Serafini and myself. This was a life dream we had quite some time ago. But I decided to repurpose this because there’s so much goodness. Here’s how it happened. So Dr. B.J. Miller and I have been friends for some time and we got back in touch and we’re working some exciting projects together.
Anyway, he shared a link to Rebecca’s article, I believe, on New York Times about disability and and disability studies and body neutrality. I was so fascinated. I read the entire article and two days later, my other friend, really good friend, Gustavo Serafini, who appeared previously here on Feisworld and also sent me an email to say, hey, you know, I never really ask for anything like this before, but if you’re going to interview Rebecca, here’s her article.
I want to be in on it. So I just found that moment to be so beautiful that all the worlds start to collide. And I was caught in the middle of in a really sweet way. So Rebecca, B.J., Gustavo each have their own different type of disability. And to be honest, I really struggle to talk about it because they’re my friends and I have never really seen them that way. And we’ve done so much together. Guys, I can’t even explain to you why it hurts sometimes when I see other people getting so fixated on their bodies, their disabilities, and make them talk about these things exclusively instead of focusing on the things they’re just so incredible at and they’re incredible people before all of that.
So let me give you a brief introduction. Rebecca Taussig is a Ph.D. She lives in Kansas City. She’s a writer, she’s a teacher, and she specializes in creative nonfiction and disability studies. She has led workshops and presentations at the University of Michigan, University of Kansas and Davidson College on disability, representation, identity and Community. And she runs those lovely, lovely Instagram platform called Sitting Underscore Pretty, where she crafts these many memoirs to contribute nuance to the collective narrative being told about disability.
And in our culture, she lives in a tiny old house with her, a fussy family of tenderhearted smugglers. And she has a very young son, a loving husband. And you can learn more about her. Rebecca Taussig Dotcom and Rebecca, by the way, is R-e-b-e-k-a-h, Taussig is T-a-u-s-s-i-g and B.J. Miller M.D. is probably not very new to the core audience here at Feisworld, but it may very well be new to you. So B.J. is a doctor who founded his company in 2020 named Mental Health, which is a consultation service here for you in sickness and in health.
So you don’t need to be experiencing a crisis of care to benefit from a conversation with B.J. and the people that he collaborate with to serve you and to help you and your family. B.J. has practice and taught in major settings, including home, hospital, clinic and residential care facility. In his work, he draws upon his personal experience with disability and his undergraduate studies and art history as much as his medical education. And he speaks all over the country internationally on the themes of living well in the face of illness and death.
He has been profiled in The New York Times, interviewed by Oprah, Tim Parrish, Krista Tippett and co-author of the book A Beginner’s A Beginner’s Guide to the End. You can learn more about mental health at MettleHealth.com. Again, that was spelled as emptily. And you can also follow him on Twitter, B.J. Miller M.D. as well. Last but not least, Gustavo Serafini, a dear friend of mine. He is an entrepreneur and co-founder of Pure Audio Video, a company based in Fort Lauderdale, Florida, that specializes in designing and integrating home theaters, cinemas, automation and security systems for luxury homes.
He’s originally from Brazil. His family moved. To the states when he was still a baby born with PFFD, a rare condition, Gustavo had to learn how to walk and live like other kids at a very young age. He studied Buddhism and attended law school to the A company as a successful entrepreneur today. So it was such an honor and privilege to put these three minds in the same room with me. And they did not make me feel little or different.
They make me feel very special. I felt very included and highly educated by this conversation. I cannot believe how long it took for all of us to get together. And I’m just so grateful that you were sitting here witnessing this to happen. I got to tell you, this was such a special moment in my life. In fact, every conversation is with every guest. I’m not going to lie. But this one in particular, it just echoing in my mind.
And whenever I need a little bit of a pick me up, I will listen to this. And I love watching those. I love watching everyone. If you’re into videos, check us out on Feisworld Media right there on YouTube, right there, you know, and we produce content there on a regular basis beyond life streams. We also share a ton of videos on creative entrepreneurship, life dreaming, Zoom, virtual meetings and really getting your ideas out there, living the life that you’ve always wanted and made contributions make a difference in other people’s lives.
So definitely if you don’t check out the video there, you can meet everybody. I have heard from other sources that everybody seemed super adorable, cute and handsome and everything. So definitely check us out here without further ado. Thank you so much for listening. I cannot wait to welcome you to this very episode.
We’re all gathered here, and today’s topic is something I’ve never, ever done before on this podcast, and it’s very meaningful. It is on, you know, disability and body neutrality. And I thought about the intro and it was really for some reason, I really struggle with this as well, because we’re all in front of Zoom and we’re we kind of we’re all the same. Right. So so thank you so much for for being here with me, guys.
I can’t wait for the stories to unfold. So, all right, so to do I have to throw the first question. I guess it’s so funny, but when, like, everybody was talking and I start talking and now nobody’s talking. All right. So, Rebecca, we all started with you because what happened was B.J. shared an article that those of yours the published on time. So I started reading it and I realized that’s really fascinating because I’ve been doing some of the things wrong my life.
So I’m here to learn, I think, and I want other people to open up and hear those as well. And then at the same time, Gustavo, for the first time ever to say, hey, if you’re going live with Rebekah and I want to be there. So that’s why we’re all here. So, yeah. Rebecca, could you maybe talk to us a little bit about your journey and what made you want to publish that book?
And I don’t I shouldn’t be the only person asking questions to actually pretend I’m not even here.
Thank you for being the facilitator of bringing us together into this space, because this is pretty special already. I’m really happy to be here with all of you. Yeah. So a few things about me. I guess I I’ve been disabled since I was three, so most of my memory making life. I had cancer when I was really young and got my first wheelchair when I was six. And I spent most of my life in this disabled body without having language or a community to really process what that meant to me. And it wasn’t until much later, well into my twenties, that I started reading actually academic work, disability studies that kind of started offering this framework and sent me on this track of rethinking my whole life, like what what my body meant to me and how it fit into the world and helped fit into my family and just kind of rethinking a lot of experiences and in my identity, essentially. So I started when I was in graduate school, I started this tiny little platform on Instagram where I was writing, I guess what we call or I started calling mini memoirs because Instagram space is very tiny. So I was kind of prompted to rethink a memory or process, a moment that I had experienced and started writing about just living life in this particular body in a world that doesn’t have a ton of representation of that body or seems to oversimplify that body and really wanting to get at the the the raw, complicated experience of that. And so I started writing about it there. And I’ve been doing that for like five years now, which is time blows my mind. But eventually that space started to feel the limitations of that space started to feel even more confining. And I, I felt my muscles needing to stretch out beyond that tiny platform. So that’s where the book came from, is it’s sort of unfurling from that space and thinking about the themes that showed up on my online space, but with more room and and I think more time to settle in and chew on those ideas. And and hopefully the book is is something that will continue to unfurl as well. I don’t think the book is like the end of that. If anything, I hope that it just prompts more conversations like the one planned for today, that this is just something for us to think through as a community and what our what our bodies mean to us and can be and what else might prompt us to imagine for the world around us. So those are some things about me. And then and then I guess we’ve got some other interesting human beings. On this screen as well, that I would love to hear from some of that background information to.
What do you want to go next, but Michelle, I jump in.
Go for it, go for it, you know what, I’ll go next and then we’ll we’ll save the best for last. So it’s an honor to be here a little bit about me and my background. So when I was to out well, when I was born with a Ph.D., which is proximal focal for moral deficiency. So basically, you know, one arm is a shortening of the femur. And my right hip was fuzed in nineteen seventy six.
There were only about 12 cases that had been documented. So, you know, my parents, my dad was it was a doctor and he, you know, research. Should we move to Japan, should we move to Canada? And this whole adventure we ended up coming to the US so that I could get. Treated figure out how I can best adapt to the world and live in it, and thankfully, you know, it’s it’s been an interesting experience, I.
Never really had a lot of friends with disabilities. It was always just kind of normal kids growing up and doing my thing. And I think what I tried to bring to the table is just to show people focusing on ability rather than disability. Right. This is what I can do. This is what I’m capable of. This is why I should fit in with you. I went to college, went to graduate school. Law school. You know, I’m a I’m a recovering academic, as they say.
And for the last 15 years, I’ve been a co-owner and a business.
Beautiful. I’ll jump in. So I’m B.J. Miller. I, I, I am an amputee since I was 19, electrical injuries in college. But I’ve been around disability my whole life. My mother had polio as a child and then post polio syndrome, so since so she walked with crutches and used to brace for my earlier childhood. And then from the time I was about seven or eight, she was using a wheelchair increasingly. And so much of my I was my mother and I are very close and much of my childhood was spent just watching the world bounce off of my mom and learning a lot about the world and being very but often moved by it.
But what I was seeing and also very troubled and it just brought up for me big questions at a young age around identity worth belonging. Transformation, and I couldn’t help but wonder, watching my mom navigate the planet and watching, knowing her, how it was always framed that she was the she was the one who was lacking something, the disability. She was the one. She was the anomaly. Something was wrong with her. That was all the language.
That’s how she was treated, etc.. In the best case scenario, back in the day, this was before the Americans with Disabilities Act, which I think helped our country begin to see disability issues through a civil rights lens, which is there’s a lot to say about that. But before that, it was if you got any attention around, it generally was pity or or some repulsion. And those are related, I think. But anyway and then I became disabled myself as an amputee and lost both legs and one arm in electrical burns and and join the ranks myself.
And then so this became increasingly personal, these kinds of questions, who am I now? What’s my worth? What don’t I have to offer? And all throughout, of course, the the thing that I had gained from an early childhood was that disability is not first of all, it’s framed in reference to some other something else, some standardized person who I don’t I don’t know who these standardized people are, but that your identity is framed by someone else.
And that disability at best was something that one would overcome and not always struck me as sort of a little off. And then I realized when I was in these shoes, it became to be clear why it was so off. That is, there’s two I can’t overcome. This is my daily life. And nor would I want to it’s such a rich field, I’ve learned so much from being in these shoes so altogether and I’m rambling a little bit, but altogether it became clear that, no, this was something I wanted to work with, not overcome, not put behind me.
And then I went into medicine as a place where I could exercise some of these lessons I was learning. So not only did I feel come to feel that disability was not only something that was tolerable in the world, but as something actually pretty important in the world for anybody to to ponder. And I think I do think disability studies in this lens that we’re going to we’re describing here has a lot to offer the world in general, able bodied, disabled, whatever.
So I’m sorry, I’ll stop rambling. There is a little bit of early thoughts, but that’s what I’ve been trying to do, an exercise in my work as a palliative care physician that we don’t fix ourselves. We work with that. We don’t we don’t fix it. We use it. We work with it, something like that.
Yeah, you’ve never, ever rambled once, I know you mentioned a few times I, I do, which is pretty incredible. I’m looking at two gentlemen, Gustavo and B.J. Both are so good at not mansplaining. It just it’s incredible. And thank you for sharing your stories. I did practice the story several times, but I have to admit that I really struggle for some reason to, you know, introduce you because I feel like I’ve exchanged over emails with Rebecca about our favorite TV show, PEN 15, and immediately felt like, you know, she’s a sister.
I feel like I know all of you so well and I start to see all of you with a very different lens for some reason, like, the emotion really starts to change. But I think what really triggered this conversation through, you know, BJ’s first share of Rebecca’s article and Gustavo and I really open up about PFG for the first time in in us knowing each other in three years and volunteer to talk about it just felt so powerful because it was a territory I felt like I couldn’t really get into.
I shouldn’t I should only be invited to talk about it. And as a result, I talk to other content creators who frankly feel like, oh, wow, I, I don’t know how to ask these questions as a podcast or as a YouTube era. I I’m really afraid I’m going to offend someone. Therefore, maybe inaction is the way to go. But I really want to break that barrier because I feel like I much rather learn what I’m doing right or wrong.
Well, maybe there’s a one point to jump in and some basics on there. I mean, from what I said, it would be interesting to hear everybody’s thoughts on this. But I mean, once some of the basics around languaging around disability, just in terms of almost like an etiquette and the state standard now is a person with a disability. So there’s a person first that I’m not just framed by disability, I’m a person. I happen to be disabled.
I happen to have brown hair and other traits. So that’s there’s a nice little basic leadin and a lot flows from that that kind of language. You know, handicapped is a sort of somewhat fallen out of favor. I’m not even sure where the source of that word is crippled certainly is out of favor, except oftentimes I’ve heard disabled folks refer to themselves as crimps, you know, sort of a fun way to kind of own it. And it’s an art club.
You know, you can join a club and get to go get some. Some is going to happen to you first and then you can come talk to us. But so there’s some playfulness around that. But like any group, I think, or any person and that’s another thing with disability is. I suppose no group of people is homogenous, really, if you look closely enough, but certainly in the disabled world, we have much in common and a lot of I think a lot of what we have in common is not so much the function and dysfunctions of our body, but how the world treats us.
That seems to me to be the bond among folks I know who are living with disability, which is interesting because it points out so much of the hardship of disabilities Zoom the disabilities itself. It’s the projection of others in this feeling that the world is excluding the built environment before the ADA. There were no guarantee cuts, you had no guaranteed access to services, etc. So literally the world was not made for you. It’s demeaning. It’s debilitating. So that’s some thoughts.
And then I want to share and then I’ll shut up. But pity, I mean, I’ve mentioned this a little bit. It is really to watch yourself. And if you feel pity welling up in you, well, OK. You know, you can’t control your emotions. I mean, that’s OK. But that’s really cause that’s something that you need to examine, because if you’re feeling sorry for me, it’s you’re projecting something on me. I don’t feel sorry for myself.
So if you’re feeling pity, it’s usually a call about anything. I would say it’s a call for you to look inward. And it may be a normal response in some ways, but it also means you have some homework to do, not check yourself. Hmm.
I think that’s that’s a good point. I like Fe. I love I love that you open with the vulnerability of sharing that anxiety that you have. It’s admirable to me that you would would kind of open with that. And also it’s relatable because I relate to that in other in other contexts too, like any the fear of offending someone or making someone uncomfortable. It’s in some ways it’s like a in some ways it’s a it’s a good impulse because we want to care for each other.
We don’t want to harm each other. But also, I think sometimes it ends up perpetuating harm because it keeps us separated from each other and and we don’t kind of avert our gaze or try to gloss over it or and there’s a real fear in that. And so I really I really appreciate you acknowledging that. And I think, you know, like I said, everybody in this community is different. So, of course, people will have different feelings about that.
But I think, by and large, acknowledging that sort of discomfort, but also stepping forward any anyways and leading with with openness and curiosity and the desire to learn, I think it’s hard to go wrong with that. And if you do, I think if there is kind of moments of discomfort for either party, I think that’s sort of the toll that we pay for trying to get closer to each other and trying to figure this out together. There’s a messiness with it.
And I think acknowledging that that can be messy and that there can be things that like language that might be used, that someone like why don’t that’s not a term that I appreciate. That’s maybe recognizing that that’s not necessarily about you in that moment. It’s just about the learning process, you know, and even like the language thing that you mentioned, it’s interesting because I think that’s just like an example of how complicated this can be, because I think person first language is definitely part of a movement that we’re moving towards in the disability community.
But I’ve also heard of the state, the word I’m kind of leaning towards say the word. It’s like I think it’s even a hashtag people use, like say the word. And it means that people some people like to identify as a disabled person instead of a person with a disability and not part of sort of claiming that as an identity. And like you mentioned, some people are claiming the word cripple and. But who gets to use that? In what context?
Like, it’s it’s a complicated, messy thing. And I think sometimes we have this feeling like we need to know all the rules before we proceed. And that’s just impossible. That’s just that’s just not I don’t think that that is a possible way to proceed. But proceeding with care and curiosity and acknowledgment and honesty, I think that is possible. Like, that’s a way to move forward. So I appreciate that.
I mean, I agree with. Everything you all said and again, thank you so much for taking this bold step forward and opening up this space, I just took a really interesting workshop recently on Sonder, as you all know what that word means. It’s from the person who invented it, it is from the Dictionary of Obscure Sorrows, and the word Sonder means to recognize that everyone else around you is a whole person with. Insecurities, flaws, dreams, hopes, and it’s just the ability to try to see the other person as a hew as a as a complete human being who shares many of the same things that we share.
So. So instead of as long as we’re approaching people with curiosity, like you said, Rebecca, I mean, that’s exactly what it is. Curiosity. I want to learn I want to understand how you see the world, how you are, who you are, what you care about. I mean, any time I meet anybody new and a lot of people are like this, there’s their social awkwardness. You’re getting used to the other person, you’re getting to know the other person, that’s all.
OK, it’s it’s like what you said. It’s the messy part of being human. I try to start with. When people look at me like with pity or with, you know, oh, are are you in pain or that, you know, I try to reframe that into let’s start with with curiosity or hope or inspiration, because at least that’s a better starting point for you to. Not fear me and start to see me as another human being, just like I’m trying to see you as another human being.
Zoom. So, so beautifully said, because this conversation triggered a lot of thoughts, like early childhood thoughts, that I think there’s also a cultural element to me as well. For example, in China, you’re supposed to help you’re taught to help people with certain disabilities, help them cross the street and things like that. And I think in a way, I was conditioned to do it. As soon as I got here, my friends will pull me away to say, you know, to ask for permission first.
So that was something really interesting for me to learn. And growing up, I also felt like there is there were a couple of kids in a huge school who had disabilities, who were in wheelchairs. And I always was the one who stood up to say, if you got a problem with her, we’ve got a problem with me. And there I was. I was five, four and like 110 pounds. And maybe that’s why later on I studied martial arts for 20 years.
But I always, you know, for some reason, it just to me, like at the time, I didn’t fully understand that feeling. And now as an adult, I feel like there’s so much due process because like you said, Rebecca, like but, you know, I assume you’re younger than I am. And, you know, in the you know, in the 80s and even the early 90s, as a kid growing up, I really didn’t have a lot of mentors or people did not talk about it was a topic almost to be avoided or, you know, so I I’m really grateful to to be able to learn so much so quickly in this conversation.
Yeah, it’s interesting to me, I think you’re right, I think it is something that. People feel a strong arm of avoidance toward, in my experience or have I think there is momentum behind that discomfort and avoidance and I’m curious about that. And I’m curious what folks with me here think about that, too, because to me, my experience as a disabled person is so very ordinary. It’s like just the most basic human experience. There’s nothing really that dramatic about it to me. And and I think part of that is growing up that way. Right. Like, I think disability is experienced in different ways for different people. And sometimes getting a disability later in life might change that. But for me, it just feels incredibly, incredibly ordinary. And I think a lot of what I came to process as I got older was recognizing how so often what made me start to feel different was, was these checks that I was getting externally from other people, letting me know that there was something something different happening here, something sad or something or something extra inspirational, just something that was different. And there was that distance. And I didn’t feel that until other people were kind of like. I don’t know, putting out those vibes toward me and signaling that to me, but so I think there is I think there is a discomfort. And B.J., when I was listening to your TED talk in particular, I started thinking I’m sort of seeing this alignment with the theory that I’ve had in the past. And I wonder if you would think this is too, too dramatic or taking anything too far. But in some ways, it seems to me that that the aversion to looking at and engaging with disability with eyes wide open sometimes might have to do with fundamentally like an aversion to death, that fear of the body’s frailties or the fact that a body is going to age. And and I don’t know that that would ever be like in somebody’s mind directly. But there seems to be something almost guttural in that that fear that it’s personal. So I don’t know what what you guys think about that, but I totally believe that.
I think it is there’s a natural concern from people and some of it I think is conditioned and learned. But I think some of it is is older, the more ancient than that. And I think it has to do very much with what you’re describing are physical presence, represents loss on some level to people loss. I mean, we can we can spend a lot of time reframing that. But on some level, I don’t know that that’s avoidable and it’s and it’s loss that could happen to them do so.
It’s very different from, say, you know, race or ethnicity things, other things that you should born into, but especially with an acquired disability. I think we represent vulnerability and vulnerability scares the pants off of people and not and to give those to give us all credit, that is a visceral neurological, neuro hormonal response. We are wired to run away from death. We are wired to feel uncomfortable around vulnerability and to try to strengthen ourselves around that.
Those are some basic impulses in human beings. So I think a lot of what we bump up against is exactly what you’re saying, Rebecca, is that we we represent that vulnerability and therefore we confront people with their own. And that’s unnerving. Also points back to so much of the homework for the population at large. This is where self-awareness and self-awareness is so key. And that’s why I back to say you own your awareness around this is is so is the thing.
When I bump into people, as long as there are some basic respect and their own in their position, then then it’s off to the races. We can go anywhere together when they’re posturing and all that stuff makes me kind of I just kind of laugh. I think I think part of the response from me as a disabled person, when people project pity onto me for the reason I hate that is because I’m looking for Zoom like what? You think you got it all together just because you have four limbs, like really you have no problems.
Your life’s just easy peasy. Everything’s working out fine. I mean, honestly, of course, because that’s not really true for anyone. So when I meet that energy, I know that someone hasn’t taken the time to look at their own vulnerabilities, their own relationship to mortality, etc. So it’s a little bit of a tell. And the towel is mostly that they’re not looking at themselves and no one has all their shit together. We’re just more a little bit more obvious and represent that sort of more obviously that sound right to you guys.
Yes, yeah. For sure. I think one thing that makes it interesting to me to think about and I wonder how this piece fits in, is my siblings, when I was growing up and Gustavo, you have you have siblings that grew up with you with your disability as well. So I’d be curious to know how this compares to you. But it’s interesting that I’m the youngest of six kids in my family, and so they grew up right next to me in with this disability.
They were right there, like especially my siblings that are just a couple of years older than me. And their reaction to my body is unlike any other relationship that I’ve ever had in my life growing up right next to me. And I think part of what might be happening there is like you were talking about our our bodies almost being like almost like being like symbols of something. And I think that the closeness I think kind of if you would look at it like almost like a study, I think the closeness between me and my siblings is is maybe capturing.
And I’m just thinking about this for the first time, so this is kind of clunky coming up, kind of clunky, but capturing like an authentic relationship to a disabled body in some ways that you, like, lose that shorthand symbolism. And it’s just like what it actually feels like to grow next to this disabled body. And suddenly it’s just another body in the room and and it has frailties, but not necessarily inherently or fundamentally different than the frailties of any human body, really, when we start looking at it.
Right. So I don’t know how that compares, Gustavo, to your experience growing up with siblings and their responses to your body or not? I’m just that’s just my experience.
If it’s it’s similar and different. So I have a younger brother who is three years younger and we were always very close. What? I guess the thing that I’m what I’m most grateful for with him is. He’s he was you know, he’s athletic, he’s, you know, six feet tall, he was a high school basketball player. And what what was really amazing about growing up with him is I love sports, too. And he was able over time, through, I think, imagination and observation to help me.
Right. If you’re playing basketball, I know you can’t move your body like I can, but why don’t you try this? Why don’t you do this instead? Why don’t you navigate these obstacles in this other way? And that was you know, there’s been very, very few people in my life who have had. That ability to imagine and to help and to see kind of the environment in a different way. So that was my biggest takeaway growing up with him, just that I don’t know if that’s, you know, empathy, compassion, all those things together.
But it was it was incredibly special to have that relationship with someone.
And Gustavo, now he has three little kids, and you told me a week ago that you’re learning a lot from dealing with children. You know, there are filters being applied, but they are still going to ask all these questions because they were able to learn a lot from that. Could you talk talk about that a little bit?
So I think so growing up, you know, if if kids approached me in a disrespectful manner, you know, you’d make up some story to scare them off and get them away. Now, I think growing up with and being there with Marcelo’s kids, they ask questions like so many questions. Right. And it’s all how come you were born with one arm? You know, why do you have to wear a prosthesis when you walk? And how come you don’t you know, why do you do this?
And they’re coming at it from a place of curiosity and. Love and I have grown a lot more comfortable, like when you said you I’m scared of, you know, I don’t want to offend anybody, I don’t want to say anything I shouldn’t say. It’s actually helped me tremendously to be that much more comfortable with. However, it is that other people see me, so it’s been it’s been a transformative process. Mm hmm.
And I want one thing I want to clarify. I feel like we are all different. I think when for me personally, I there’s definitely a sense of fascination. Be completely honest of a body that’s different than mine. And granted, like, everybody’s body is different than mine. And I had a lot of fear growing up, too. You know, I will bring the story out. But at another point. But a week ago, Gustavo said that, hey, let’s hop on a call to to prep for this.
And one thing we talked about was when we met for the first time in a Seth Godin environment. By the way, this is being streamed to the official Altenberg group as well, that he felt so comfortable in front of 300 people. And so I said, well, what didn’t make you feel? What kind of situation wouldn’t make you feel comfortable and survive? You remember you talked about eye contacts and avoiding eye contact and and, you know, people are walking away from you.
And believe it or not, I couldn’t believe this has been this has then happened to me in the past few days as I moved from, you know, the Boston area to now western mass. I had no idea how, you know, 40 minutes made a huge difference in the past few days. I brought my mom to go grocery shopping. I noticed, like, I’m not kidding. Like our presence probably tripled the Asian population in this particular area.
I actually, for the first time living in Massachusetts for nearly 20 years, I felt uncomfortable because I know people where they were staring at me and everything. As I’m walking back with bags of groceries, I noticed like these, you know, people will turn and look at me until I get closer to my car and then had a very different reaction than women. And some of them looked, frankly, a little bit scared. And I was like, does this have to be to do with like who?
So I started creating all these different questions and imagination’s in my head. But Gustavo, I felt like I you know, I still am now. I worried a little bit like going grocery shopping becomes a very different experience to me. I felt a sense of protection towards my mom, you know, like things like that. I don’t know, like an environment. I don’t know what exactly is going to happen. So I wonder, do does any one of you feel a certain way in a certain situation or location?
What should people do to to really show the respect and to really, like you said, not not to look at each other differently? Since.
I think at least. I think I think it’s a similar. Well, you have to decide to and it doesn’t need to be one answer, like, how do you want to? Sometimes you can play with it. You know, you could say boo to people. You know, there are ways to get playful. I went through a period after my injuries where I. I needed to get into this, so I started wearing, like, really short shorts and I do my hair was like out to here and I just started getting playful with my I saw my body as this thing that.
I’m not I’m by my body’s mind, but I’m not just my body and I can work with it, I can play to treat it as sort of a raw material that was very therapeutic for me and maybe helpful for others, or at least entertaining to watch on some level. But I just offer that is for you now. You’re in the role in this way of the disabled person in a way, the way we’re talking in this community, you can for yourself.
What do you want to do with that? You want to teach these folks, say, hey, I know you’re staring ever you never, ever met an Asian, but I know you can take it upon yourself to teach folks. You can take it on your self to shock folks. You could do anything you want. I mean, first thing is to realize your freedom in your agency in this. And that may be a little pat, because there may be times where you don’t feel safe.
And I don’t want to just be glib about that. But anyway, one one we’re beginning of a response would be to say find a way to own it and play with it or work with it or use it yourself. That’s a comment you guys think.
It’s so exhausting, though, I mean, I imagine. You have you coming back from that trip and I don’t know, I don’t know. I don’t want to project onto you, but I’m thinking of for me being in public, sometimes it’s just exhausting when you are at the spectacle. And I actually had similar phases with the for me it was just like fashion and and my hair. I like bleached my hair all white for like a decade and just wore the most outrageous sweaters.
I don’t know, just like just almost like trying to become a spectacle before someone could make me the spectacle. I guess. So that definitely resonates with me. But in terms of if we were to flip it and think about the starers and think about that, that positioning. I think. I think that the thing about being the one difference in the room, I guess, provides the visual difference in the room, is that you were so obvious, but like your perspective is the only one of its kind.
And then everybody else is sort of operating from the deep fault perspective. And I think sometimes that’s so natural. If you’re used to being of the majority and you’re used to being the person that blends in, it’s so natural to just sort of stay in that mindset or in that space. And I think it takes intentionality and and. Yeah, it takes a decision to decide to think about the perspective that’s not your own and to think about what it feels like to be that person in the room.
So I’m thinking even beyond staring, I mean, I think hopefully staring is something that we can catch ourselves and stop ourselves from doing, but even just thinking about for me. So I am I’m operating and I’m in a wheelchair. And so I’m moving through a room like two feet lower than most people in the room. And so I think even sometimes it’s really easy to, like, look over me or talk over me. So if I’m in a big room, it would mean it means a lot to me.
And I notice the people who think about what I would be experiencing in that room. So somebody who kneels down to talk to me so that we’re eye level or grabs a chair to talk to me so that we’re eye-level is a person who’s thinking about what I’m experiencing in that moment a little bit. And and a lot of people don’t have to take that extra thought and think about it. You know, you are used to moving through a space as that, as the norm.
A lot of times you’ve never had to think about take that extra step to think about it. So I guess for me, that would be one thing is just to notice the people that are in a space with you and just take an extra step to think how they might be experiencing that space with you.
Mm hmm. It’s super helpful and just fascinating, and for me, it just I’m learning more about myself, my environment, because, you know, I went from going to high school in Maine where literally there were five Asian people in that town of 20000 people to Boston that no, I haven’t felt like I’ve been noticed by anyone anywhere for 20 years. And all of a sudden, you know, like people can pick me out. So, Gustavo, you are I know you have a ton of questions.
I hate to call you out, so come on. It’s your opportunity.
All right. Well, I was letting you know everyone have their say. I’m I have a question for Rebecca and P.J.. I don’t know if we need to maybe Rebecca, you can for the audience who haven’t read the book, you spoke a lot about the medical model and the social model. The first question that I have there is. Is there is there anything in the literature, is there like a third model that’s being proposed or are those the two major ones that are being worked on and thought about?
Oh, that’s a great question. There are other models and now I feel like I should have studied this, like I’m like defending my dissertation again. There are other models and Allison Kafer is is a disability scholar who is has proposed a more complicated model that has to do with social and political experiences in the world as well. That kind of brings that into the fold. And then there are also models that think about disability and bring in the sensory experience of disability more, which also reminds me a bit of some of the stuff that I’ve heard talk about in terms of just what it means to live in a body and experience the world even just through one sense or kind of thinking through like I’m thinking about an image describing.
A disabled person who doesn’t doesn’t communicate through language, but has the ability to kind of wiggle a hand, and if you put a paintbrush in that person’s hand and put a paper up against that and see what’s created from that, from that expression, thinking about like just thinking about the human body in a different different way and with different hierarchies in mind. And I don’t remember the name of that one. But yes, there are other models. I think the the the medical and social model, one of its strengths is its it’s one of the strengths of those models is the simplicity of them.
They kind of break things down in a really black and white way. And that’s also a limitation because, of course, real experience is always tangled in between those two spaces. I don’t know if it’d be helpful. Really quickly, I can just talk briefly about the social and medical model. So I don’t know if whoever is listening would be familiar with that. But the very, very basic kind of. Bottom building blocks of a lot of disability studies has to do with the difference between the medical model and the social model in the medical model would be what we have kind of a more typical way of thinking about the body in this place and time, which is to think about disabled bodies as being the individual problem that needs to be fixed and really focusing on that body that needs to be overcome in some way.
And then the social model thinks about the experience of that disabled body and looks at disabling experiences more than the disabled body. So thinking about the environments that create moments of pain and suffering for disabled body. So the difference, like a really simple example, would be a woman sitting at the bottom of a flight of stairs and the medical model will look at that scene and say, oh, that poor disabled woman and her broken body. And the social model would look at that scene and say, oh, well, like, why would we not build a ramp in an elevator and then problem solved.
So that is a really simple beginning way to think about the difference between focusing on a broken body that is mean less because it’s disabled and then thinking about these environments and social understandings of bodies, disabling experiences. But guess Gustavo.
So then so then the complicated question that I have from there is this. I want to hear from both of you, but as you know, B.J., as a doctor, right, where can we say that the medical model that Rebecca just described is correct? Like what’s worth salvaging there? If we turn and say, wouldn’t it be great if we could cure all diseases and then failing so miserably with seeing people with disabilities as a defect that has to be fixed versus something that can contribute positively to the world?
If we can act happening there, well, so right on so each of these I’ve hurt each of these models and others are helpful, right. But to a point and that by definition, you define pick a word for or a construct, you’re by definition abandoning other words and other constructs. So part of it. Part of the trick is to also understand that these are constructs that are invented that help us make sense. But there approximations of reality.
I mean, in this way. So medicine and the medical model has something to offer. It’s not entirely bankrupting or it’s a useful thing because it turns out sometimes a disability is a problem and feel and the experience is problematic and sometimes there’s actually a fix for it. So, like, if I if there were some breakthrough that allowed people to sprout limbs. Would I do that? You know, that’s an interesting question. I wonder how you’d answer Gustavo.
I’m not so sure I certainly wouldn’t leap at it depends how functional those limbs are, et cetera, et cetera. And if I had to give up the lessons I’ve learned by being in this body, but my guess, my answer, your question more narrowly sometimes. No, we don’t have to spend disability out of it. Sometimes it’s freakin problematic, just like life in general. And when there’s a fix, I’m all for it. The problem with the medical model is not that this is what it does when you can’t, when you’re not fixable or don’t want to be fixed.
That’s where the medical model breaks down and abandons people. And that’s its major flaw is it substitutes its model for for it’s all encompassing reality and then therefore leaves so many people out. And this is where people later in life and the power of care and hospice I this my fields are sort of correctives to swoop in and offer a place to hold people who are falling through the cracks. The structural cracks were no longer relevant, with my problems no longer fixable.
And I’m not really relevant to the modern medical model. So so the working out of care is meant to expand that and to link to other ways of seeing and other models. But to narrow, sorry and narrow answer to your question, Gustavo’s medical models, great to sometimes things are fixable and I might want that. That’s OK. Just the problem is don’t substitute any one of these constructs for total view on reality. That’s what that’s where it all breaks down.
Yeah, I totally agree. I mean, I, I think I’m alive because the medical model said there’s like this tumor wrapped around your spine and we can fix that, you know, like, thank God. I’m really grateful for that. I think to me, yeah, I would totally agree. I think to me, the medical model, if the idea is that we will do anything in order to make your body look as close to this imagined ideal or normal default body as possible at the expense of joy or fulfillment or being able to be present in your life.
I mean, I think sometimes the medical model takes that as the takes the goal of that ideal or normal body as the obvious goal when there are so many different parts of being a human being. And for me, I suppose. If my parents had been more rigorous and like made physical therapy my number one priority as a child and I had spent like a full time job in physical therapy, as a child, I might have a little bit more mobility than I have now.
I’m kind of glad that that wasn’t what my childhood was like. I’m kind of glad that I got to, like, roll around in the mud and and, like, make magic potions with my siblings and have that freedom. And and I get along in my chair pretty well. So I guess I love the way that you describe that you that like any time we adopt one of these models, we’re also losing other other things. Right. Like they’re only there.
It’s just almost like it’s almost like a pair of glasses that we can pick up just to look at something in a new way, not as if that’s the only only way we should ever look at it. Yeah.
And that’s the human that’s so much the human capacity and potential is that we can’t change the world, but we can change how we look at it, sort of simple terms. And you can switch out your glasses, but on a different lens. And I think we’d all benefit from realizing that each of us has that has that power. We can look at reality through various lenses and we can change those lenses. They’re alterable. We should that’s the big hazard of substituting these models with the totality of reality.
But that’s that’s the bigger problem.
So there’s a common theme in all of your writing, as I noticed recently, and Gustavo brought it up as well. I would love to hear your thoughts on this, which is design thinking and the exercise of imagination. That’s a commonality and a just a very fascinating to me.
I that’s what I was I was actually taking notes on the second time or third time that I watched your TED talk because I just can’t get enough of it. I am like I’m making my my partner watch it with me again later this week. But that was what stood out to me. So much, too, is like the imagination part and the play and the creativity. But I think with death and disability, there is sort of this acceptance, like there’s only one way to look at it.
And it’s and that is a terrifying, horrifying thing that I’m going to do my best to pretend like doesn’t exist and then that’s it. But it’s also an inevitable part of life. And when so when we bring that in to the center and we allow that to be a part of our existence, I think that there is so much untapped potential for rethinking the way we interact with the world and how we see ourselves and what we let ourselves experience. And in the tiniest, tiniest example and the most tangible, tiny example, we see that with disability and curb cuts or closed captioning, like as soon as we think, well, what would it be like to actually bring a disabled body into the middle of this experience and think about how we could include that experience in the center?
Suddenly we’re like, oh, there’s other ways to engage. There’s other ways to to participate in this world. And now not only does the wheelchair user get to use that curb cut, but so do parents with strollers and people on bikes. And not only do hearing impaired people get to see what’s happening on the screen or participate in the screen, but now so can people who are like at work and don’t want the video to project into the workplace and have anyone know that they’re watching the video.
You know, like there’s just so many places where I think we can open up and and have more people participating in more ways. And how fun is that? So I totally feel that the things that I’ve heard you talk about and I think it’s so exciting, I think it’s a really exciting place to be.
Me too. I get it. I find it thrilling. I mean I mean, some of the thoughts that have helped me and the touch on design thinking, but also touch on modeling Gustavo, which is sort of sort of structural ways to look at things. You know, it’s been very helpful for me to see my disability in every aspect of my life as variations on a on a theme, rather than that we’re uniquely having different experiences of it might have different experiences, but there is a commonality underneath all of it.
And I really think it’s very useful to pick between the individual and the shared and the unique and the shared. So and also just making sure to craft a world view that includes you and everybody else in it and anything that might happen to you. So seeing disability as a variation on a theme like, say, if you are, you may not qualify as a disabled person, but we can in the design thinking way, we can reframe the issue as disability.
That’s a word. The issue maybe the issue is vulnerability. Like we talked earlier, there is something that everyone shares, whether they’re willing to admit it or not. There’s a different story, but some sort through some simple reframing. You can find yourself in very rich territory and very inclusive territories. And that is a creative exercise, finding words, creating words. So I find it like it’s been very helpful. See, this is a variation on the theme that we all go through.
It’s also very helpful to see things on a spectrum. So it’s not like disabled people over here, able bodied people over there, you know, again, wanting to sort of demand sort of inclusion here. Are we on a spectrum? There’s no independent person. You can be relatively independent, but there’s no one in the world who needs no one. And that’s a really important refinement. When I used to be independent, then I became disabled. And so I had the feeling was I had to leave one world and go to another.
But that’s that’s just not accurate. And it’s not very inspiring either. The truth is, we’re all in various modes of dependency. It’s throughout our lives. We move on the spectrum that every single one of us is on. So these are sort of creative ways of revisioning things and welcoming more people into the mix. And then the third piece it’s related to this is is coming to appreciate what how important in the human experience limitations are. So you start looking at us as a species.
I love thinking about myself, comparing myself to my dog. You know, if you threw Maisie and me out in the woods, who’s going to win that one? You know, we humans, we need. We need all sorts of things, we’re not really we’re not a very impressive species, but for our minds, but for our perspectives and our ability to think creatively, that’s where we as a species rise, not out of having forelimbs versus two.
So thinking about the basic human experience as being one, responding to limitations and then all of a sudden disability becomes a spark, something that gets people or their creative juices flowing. You might follow the language around disability. You think all disabled people are just sort of in pain and sort of in a corner and can’t do anything? Of course, the truth is, because they’ve had to work, find work arounds and work through this, they are also incredibly creative.
They may not use that language or think of themselves in that way. But anyway, my long winded way of saying here is from a design point of view as well as modeling, is seeing limitations as essential to the creative process. And therefore it’s not loving them, at least appreciating them. And that often opens up a lot of creative juice for myself and others.
I love the word limitation as it relates to creativity. I think the first time that that clicked for me was there’s an art teacher at our school who did this exercise with the other teachers where he had us draw. He had a cat and he gave us a minute to draw a cat. And so everybody is like getting the whiskers just right. And then he was like, OK, now draw the cat in 30 seconds. And so everybody is like trying to do it faster and faster.
And then he gave us 10 seconds, five seconds and then three seconds. And a lot of times what you’ll find is like something between five and three seconds. Suddenly there’s like this amazing, weird looking cat that was created out of that limitation where it wouldn’t have been before. And then you start thinking about things like poetry. Poetry is a form that only exists because of limitation. We decided that actually we want this number of syllables and we want this rhythm and we want the structure.
And suddenly there’s a poem that wouldn’t exist if we were like, just put all the words wherever you full access, however you want to use language. So in the same as with music, like when we bring limitation into our experience of the world, that’s when, like new things that never would have been considered can blossom and bloom. So I love that word limitation and reframing what that what that can mean. Yeah. You to.
I love what what everyone said that I tend to use the word constraints instead of limitation just because I like to think of them as. A lot of them are imagined, we think that they’re not really there, so what can we actually push through? What can we actually work work around in my in my business, in my industry, working with high end clienteles, architects, designers? I see a profound lack of imagination for various reasons. And I think that a lot of it has to do with its cultural right.
We are champions of industry, not of craft, even like to think otherwise. It’s more, better, faster, cheaper, as opposed to mastery. And how can I do this better and how can I take the time to make something that’s truly. Special or imaginative or, you know, why can’t our kitchen shelves come down to us? Why do we have to go up to them like it doesn’t seem like that hard of a problem to solve.
Why has why has nobody done it yet? To me, it’s cultural. It’s a cultural limitation that we just put on ourselves because we’ve always climbed the stepladder to go get.
You know, I love that spark, I mean, I think. You know, you guys reminded me of one of the favorite moments I had. It hasn’t happened in a while. But when I talk to kids, kids are really interesting to watch around disability, but. Just to kind of spark and how we all use this normalcy as a crutch to hide behind and how how it squashes creative thinking, just like you illustrated, Gustavo, I love when kids I love these moments.
So kids will ask me, don’t you miss having two hands? You know? And I was I I hope it happens today when this happens, but I’ll say. Well, yeah, sure. I mean, yeah, two hands is cool. That was yeah. I miss my hand but don’t you miss having three, you know, and invariably something that comes on kids is like what. You know, like I’m nuts. But sometimes a kid or an adult will get the we’ll get the point.
The point is like what’s your frame of reference here? You know, and again, we have the potential we have the ability contextualized. We can say what the frame of reference is. We can make ourselves as normal as apple pie or as abnormal or whatever, just our constructs. We have that freedom as human beings. And so I love that charge to people. Don’t you don’t say aren’t you just you must be bereft that you don’t have six limbs, you poor thing.
You know, like, I think it’s it’s a very useful way to get you out of all the assumptions that go and get in the way of creative thinking.
Yeah, I read that in an article somewhere. I do. I love that. And especially I couldn’t just imagine myself in that classroom, kids just being shocked with their mouth open and just don’t know what to say. It’s incredible. So, yeah, Gustavo, I’m I know you’re bubbling with, like all of these thoughts and ideas, you’re so energetic with me, like a week ago.
Am I not being energetic now?
No, I love it. We had this little plan of Gustavo had such incredible questions. He was like, anything you’re afraid to ask? I can ask the questions. It hasn’t worked out so well. Yeah, but this is this is really amazing. I know I booked 75 minutes in case there’s any delay and we still have a few minutes to wrap up and to respect everybody’s time. You know, I still have a question, which is I know that, you know, people content readers ask me sometimes and, you know, to be quite honest, like, for example, LBJ, when other people interview you on including NPR and all that, I you know, like when people ask you to repeat your origin story and like the day after, to be honest, like I started to feel like I feel a little offended.
I know I’m projecting my own feelings again. But, you know, I felt like it would be wouldn’t it be nice or appropriate to actually check with the person and to say how I would like to be introduced and maybe, you know, I don’t know. I think you know where I’m going with this.
Yeah. Yeah. I have a mixed feelings around it. I’m on the one hand, especially, you know, for me, I’m trying to be out in the world. On behalf of issues around suffering and illness and death and and maybe shifting health care and some other things, so I’m out there on behalf of issues and I have to realize that part of what’s part of why people will listen to me is has something to do with my story, has nothing to do with this body that I’ve lived, some of the things I’m talking about, etc.
And so I had to accept that it’s part of the fair that people need to know the story. It’s a way in to what can be really hard and quickly abstract constructs. So fine. So it’s OK. You know, I don’t really mind so much as that. It unfortunately ends up can end up just sucking so much wind that we don’t get to the things that I’m trying to get. This is on behalf of some other things. So sometimes I get a little upset that it’s just a question has been asked.
Who does the times? I don’t mind being asked. I mind when the interviewer just stays there, you know, that’s where I am. And I need to get a little bit better about commanding that. I’m still field novice with media. And so I just basically respond to whatever people are asking. I think I need to get a little bit more politically savvy and and answer the question I want them to ask me. Not when they ask me.
So but back to your question. Yeah, it’s annoying to a point, but the point is that it ends up interrupting or getting in the way of not facilitating, getting in the way of bigger conversations.
Yeah, so, B.J., how have you so my my question that Faye was prodding me to ask, but I think you’ve answered and you’ve answered it already in many ways, but. How do you you as this master of creating these spaces, of holding these spaces for people with surrounding death, illness, et cetera, have you have you used your have you gone back to you say, your 13 year old self, your 15 year old self, and use that as a way to help, you know, able bodied people better understand or open up or project less as to what it’s like for for you and what you have to teach them and bring to the table.
You know, I haven’t persay, but as you say that. I do think and I haven’t named it, but I think one of the things that qualifies me to do the work I’m doing is I’m straddling a lot of worlds like the medical world with the medical and social models, for example, or, you know, part of care is as something of a misfit in health care. So I’m always someone on the periphery. I feel like I’m straddling worlds.
And I’m I feel like in this way I’m an usher. I sort of link link things in some ways. And I think maybe what qualifies me in this way with patients and families is not only that I have I’ve come close to death and I’ve lost body parts that I’ve been a patient and I’ve been in the bed, as I say. But as you say that, I realize it also calls for that I had life before being in the bed.
And I think it’s both that I have a line of sight on both of those experiences. That is is what what helps me do my work. So I haven’t thought about it until you just said that, because I guess I would say but I think I will start using that a little bit more. I think I naturally just do that without thinking about it. But I’m going to take your question to heart and ponder it some more, because I do think I’m I’m qualified for these conversations because I’m disabled and I’m qualified for these conversations because I’ve been able bodied.
It’s both. Hmm. Well.
Oh, I just this is incredible, I’m so grateful and so I don’t want this to wrap up as a project manager for over a decade, you know, when a meeting ends at five, fifteen could easily carry on. But with that said and respecting your time and I don’t think this is participation, it is like more of a you know, for me, this is coaching and learning as well. So any last thoughts, things that you wish that we brought up but didn’t?
Why don’t I? Oh, sorry, you go ahead, because I was just going to say I don’t have any, except mostly I’m just really I think you all, like everyone on this screen, is so cool. It’s OK to connect with you. I just this is really, really fun for me. So that’s all I was going to say.
Next time or if we can do it now, great, but. In your book, Rebecca, you like when you described your early childhood of, like playing in the mud, and it was. This is for me, this is not an exaggeration. OK, but I read Dante, right, I’ve read a lot of religious and spiritual works. To me, that was the most my childhood was not like that, but it felt like the most believable description of what heaven could be like.
Right, if it if it existed. I’m not religious, per say, but it was really. And so when you look back on those moments, like, how do you feel that you could bring more of that into the world around you? That’s my question.
My heart is, is. Doing some swelling and breaking, it’s really, really I feel a lot of tenderness around that, and I love that you connected so much with that moment, because to me, when I when I read the book out loud for readings or when I did the audio book, there’s a line in the book when I talk about those memories and I talk about how. How sacred that space was for me and those memories are for me and how I’ll never be able to get back to that exact space, and that’s one of the moments that I always cry in when I read the book, because I never really thought of it as being sort of like a heavenly space.
But I, I have used the word sacred. And I man, the way that you are describing that is making me feel a lot of things. So just the fact that I like to have you read my book is really special. So thank you for that. And to begin with. But your question. Yeah, I mean, that would be the hope, right? I want I want us all to be able to be in the space where we’re able to relish our bodies.
And and I feel like so much of the time what we’re doing is either ignoring them or trying to force them to fit into something we think they should be or using them recklessly as opposed to just. Breathing in and out and feeling our lungs fill and putting our hands in the mud and watching them kick up on our palms and not worrying what the mud looks like to other people. Right. So I don’t I don’t know how do we call that forward?
I mean, like, I think telling our stories and getting to share the moment like we’re having right now and then sharing that with someone else and remembering what that feels like and and in the back. The momentum behind that, I hope, creates more moments like that for people. I think that it I think that it’s it’s like a combination of of an individual thing and the way we think about the world. Moment to moment, like I’m even thinking of, like earlier today, being on the bed with my four month old son and he’s like rolling around and like hurting and he’s just, like, slobbering all over his face.
And I’m just like studying that. Like, look at you, look at you just like eating up this moment of being alive in your body. So I think part of it is like individual, but I think there’s something we need to do for each other, too, like creating that space for each other. That’s important. It can’t be something just that we that we intention for ourselves, but it’s something to be mindful of for ourselves and to build for each other and create space for each other.
And I hope that the more that we share, I don’t know. To me, storytelling is my thing. So I hope that I can keep telling that story and sharing it and calling forth for us. Mostly, I just thank you for bringing that moment up for us right now, because that that means a lot to me to hear you and the way you experienced that.
Yeah, so beautiful.
This is so Gustavo, you’re supposed to cry, you’re not supposed to make Rebecca cry, remember? Remember flying again. So it’s so lovely. I mean, little things. Rebecca, following you on Instagram and watching all of BJ’s video, one one of which I forgot about, is that I love my body. And that moment, an hour later, I had a call with my Viana who designed all of these beautiful artworks by my mom, like them on dresses.
And I literally found myself say for their last time, because all Chinese friends and family tell me, like, hey, you have such your arms are so big from taekwando and swimming. Oh, my God, they’re so big in the documentary. And I’m like, I’m 120 pounds. I mean, how big are they really? And so I stop. I literally never wear tank tops for a long time. And just in that moment I just said, onna order three of them.
I’m going to start wearing them. And people ever comment on those again? I say, you know what, I love my arms. They’re mine. You don’t have to love them. So this is this is my new look now. And if all I can believe in like 37 years, it just feels so liberating to say that and to feel that way and not to, you know, to feel that I love my body. You know, I I can love looking at it in front of the the mirror with or without clothes, clothing.
It’s just such a it’s such a wonderful feeling. So thank you guys for for like changing my life on that as well.
So I think that’s right. I think I think that is I think that is powerful, like you see other people doing that. It’s like you didn’t even realize that you I don’t know. I don’t want to put words in your mouth, but like nobody else doing it. And you’re like, oh, I could join that. I could do that, too. I maybe didn’t even realize what the barrier was before, but when I see somebody else doing it, there is something really powerful about that is that is real.
That is real. I felt that to.
It’s awesome. I can’t wait to do this again, and I I love the fact that we we’re so open and I’m really grateful. I feel so privileged and I really hope to bring more of these conversations forward.
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