The Nuance of Disability: “Because of,” NOT “In Spite Of”
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A film director and producer, along with a writer, share their stories as creatives who embraced their disability and made a conscious choice to flourish because of it, not in spite of it. As a result, their work is now reclaiming the narrative around disability and portraying it not as a burden, but instead, simply as another essential consideration within which to work, much like a budget or a guideline. When reframed like this, disability changes from an afterthought or a legal requirement to a welcome and helpful element that, along with others, guides the ingenuity, design, beauty, and usefulness of the end result because it tells a better story from all angles.
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All right. And it is 03:00 PM. Welcome. Welcome, everyone. I am so thrilled to be here because we're going to have a fantastic programme today. I am Helena Escalante, the entrepreneur in residence here at the New York Public Library's Business Centre. And today we have a fabulous programme that is called the Nuance of Disability because of, not in spite of. But guess what? Before we get started, I need to read to you just that little blurb from our legal department that they asked me to do that, so I will do that as fast as I can. All right, time me. The library uses Zoom for this programme and does not own Zoom. Zoom has its own privacy policy that you can read on its own page. Zoom also has closed captions. If you need them, simply click on the CC button on your screen. Wherever you find those controls, whether they're up or down or in your smart device, wherever you have them, that's where you'll find the CC. And then, to understand how you and the library use Zoom, please go ahead and read the library's privacy policy, especially the section that refers to third party library service providers.
Also, a friendly reminder that at the library programmes, everyone is welcome and respected. We love you. And also a quick reminder that if you'd like to hear more about the programmes that we have coming up. All you need to do is sign up for on the link that my wonderful team is going to post on the chat right now. So that you can receive our weekly email. Where we send a short and sweet email every single week with all of the programmes that we have coming for the next week. And that's how you learn about series like this one. That's how you learn about one of awesome programmes like we normally have classes, special things going on, et cetera. All right, so how did I do? Less than a minute. All right, so now this is the part that I absolutely love, which is introducing our guest. And by now, you're probably very familiar with him. His name is Gustavo Serafini and he is going to be our host today. Our moderator of the panel, he is the host of Enabled Disabled, a podcast and a community created for people with disabilities and their families, friends, clinicians and therapists to shift the narrative around disability.
He speaks with his guests openly about what it means to have a disability, as well as what it doesn't mean. His platform helps him dive into how the guests have experienced disability, what it has taught them about themselves, what it has taught them about life and other things. Also. They talk about the tools or experiences that have helped them better navigate and adapt to the world. What they wish other people knew about them. What they are working on now. Which is always cool and very important. Especially the two guests that we have today and how they would like to improve the world and by sharing their stories to stab a hopes to influence thought leaders and companies and empower people with a disability and the professionals who work with them. Which is awesome. And if this were not at all when he's not recording his podcast, he is an entrepreneur. He co founded with his brother Marcelo in 2005, Pure Audio Video, which serves clients in South Florida, the Caribbean and the US who are looking for amazing home entertainment experiences in their luxury homes. And you should see the pictures of those homes.com. All right, so, Gustavo, take it away.
The floor is yours. And I am so happy and so grateful to have you back for another programme. So thank you.
It is an absolute pleasure. Thank you for the wonderful intro, Helena. I'm going to try my best to do as you have done every single webinar. Your intros have gotten better and better and I hope I can do the same. Thank you. I'm just thrilled to introduce our panellists today. They are some of the most remarkable people I've met. Collaborators, friends, fantastic human beings. Kimberly Warner is an award winning filmmaker. She founded Unfixed Media in 2019. She has done a brilliant job of humanising and adding so much breadth and depth and interesting stories around what it means to live with a chronic condition or a disability. Some of her questions and the way that her guests, she gets her guests to open up and become vulnerable and talk about themselves, it's just nothing short of remarkable. Kim has lived with a rare neurological disorder for several years and that really has helped her, in my opinion, tell better stories. And she has used that as well to have a big advocacy role within the chronic illness community. She's a member of the Patient and Physician Advocacy Alliance. She's a visiting faculty member with Global Genes.
She helped create a certified medical school course for clinical confidence. She is on the editorial board of the Journal of Health Design and she is an awardwinning filmmaker. Rebecca Tossig is a best selling author. Her book is Sitting Pretty, one of the top books I have read in the last decade. I admire Rebecca so much for the way she weaves her stories together in a way that her vulnerability, even when she's afraid to share it, she still goes there and she finds new sources of strength and wisdom in that. And I love her pieces in Time magazine. I love everything that you've written. Rebecca is fantastic and she is currently working on pitching some phenomenal TV series to Hollywood, and hopefully that goes through. Whether or not it does, I think it's just enormously gratifying to be there, to be in the room, to be representing and to be pitching your stories to try to make this world a little bit better. So Rebecca and Kim welcome. Thank you so much. For being here.
Hi, Gustavo. Hi, Rebekah.
I'm so happy to be in this space with both of you. This is exciting.
Feels like Christmas. Yeah.
Salivatory.
So, we are going to get started here. Before I dive into the questions, I would like everybody in the audience to think about something a little bit differently. So we're going to get into this much more in the presentation, but start thinking about it now and have it in the back of your mind. When we talk about stories, whether that's a book, a video game, a film, I want you to also think about them in terms of what are the stories that we tell ourselves every day about each other, about ourselves, how do we think about ourselves, how do we engage with stories in our businesses? Because what I hope you'll all find is that this presentation will encompass both of those things. So I think it would be a really interesting exercise to go back and listen to this afterwards and look at it from the multiple perspectives. So I can't tell you all how many times in my life I have heard this story from somebody. Gustavo, you are so amazing and incredible. You were born with without an arm. Your right hip is fused, your femurs are shorter, you have this rare medical condition, and yet you're an entrepreneur, you're a business owner, you did all these things.
That is remarkable. And I know that Kim and Rebecca have heard similar stories for a long time. And after the first few seconds of feeling good that somebody's complimenting you, you start to realise that what they're really saying is, or at least a big part of what they're saying is you have done all of these things in spite of your disability. Your disability is the thing that's weighing you down. That's something you have to overcome and you're doing all of these things in spite of it. And we are here to start shifting the narrative around disability, to start to say, what if we thought of disability as a because of experience. So my first question to both Rebecca and Kim is, I'm going to ask a question like this because of my disability, fill in the blank. So, Rebecca, would you like to go first?
Sure. Yeah. I love this question and when I think about that fill in the blank, actually, the first thing that comes to my mind is an image. So I have these nieces and a few years ago they were getting to the age where they started to be really curious about my disability. Like, why can't you run to the basement with us and why won't you just stand up and come outside? And you guys can't see on the zoom, but here I am, this is my chair. So they were kind of interacting with and asking questions, as they tend to at that age. And I don't really remember how we got here, but I started sort of inviting them to touch my legs and feel them and kind of see how they felt in their hands. And he got out markers and started like colouring on them and there were blues and greens and purples that's like this whole mermaid palette. And I don't bring up that image because I think that's representative for other disabled people. I think that there would be lots of people with paralysed legs who would not feel comfortable with that at all.
But for me, I feel like that image represents so much of what my embodiment, my disabled body has kind of brought to me. It's this crack or this crack in our notion of normal, this sort of immediate deviation from the default that invites curiosity and imagination and wonder. So if I would fill in that blank, Gustavo, because of my disability, I think I would say I have this really close, intimate relationship with imagination and creativity and curiosity and innovation and a bit of wonder that there is this sort of embodied portal to that, I think that resonates in the big picture of how this body has shown up for me.
That's a beautiful answer. Thank you. And we are going to have a lot of opportunities to talk about curiosity and wonder and imagination. Thank you.
Kim, I love that you said the word crack. Rebecca, I know I'm going to answer your question, I promise Gustavo, but just reflect because I was just writing down a quote that one of the subjects from the original N Six series said, I don't know if you're familiar with Kentucky, but it's the repairing of broken pottery with gold. And she has this beautiful quote where she not just prior to her chronic illness, she had abusive relationships and was homeless as a child. All these things that she felt were the cracks in her being. And she realised after living with her chronic illness for quite some time that the cracks were not an entry point for weakness, but rather they were a point for the light to shine out of. The more cracks she had, the more light was revealed and I just get goosebumps. So you said that word crack and I was like, that's it. Anyway, okay, how do I answer this question? For me, because of my disability, and I'm coming from a paradigm that was so much about needing to be fixed in a world that felt like there had to be that a cure is necessary in my paradigm and I could not find a cure.
And I didn't think that I could be strong without a cure. And so because of my disability, I have discovered an inner strength that is not conditional to my physical wellbeing anymore. And that truly is a huge shift in my psyche because I did not believe that I could be happy, peaceful, joyful, purposeful, meaningful if I felt bad in my body, if I was suffering, if I was in pain. And so discovering this unconditional liberation while feeling imprisoned in my body is well, it's liberating. Can I add one more thing?
Of course.
Because of my disability, I have discovered the gems of our species living on this planet, all the other bright lights who understand suffering and the human condition and they understand this paradox of being able to smile and cry at the same time.
I feel the same. I feel the same. I'm climbing onto that one too. The connection. The connection and the understanding and the connection around that idea of embodying contradiction or ambiguity of being able to exist in that space. I feel the exact same.
I think another interesting aspect of what you both said is that this idea of both and it doesn't have to be one thing or another, these things can fluctuate within a given period of time throughout the course of our lives, but they're both there. And if we can embrace that complexity, at least for me, it feels like there's so much more. It's like a virtuous circle. Once you embrace the both and you go back to the curiosity, you go back to the light, you go back to the connection and you find more of that in your life and you feel it's more fulfilling, it's more interesting, it keeps you going. Do you both feel that? Do you think that resonates?
Oh, yeah. I hope I can go through one sentence without talking about the both band, because it's so important to me. I feel like that has been really fundamental in a shift in how I exist with disability, I think for a large long part of my life. I mean, I grew up disabled, right? So as long as I have memories, I was disabled. And for myself, much of my growing up years, I only thought of disability as in a one note layer. My job was to be joyful despite my disability. And that was the story. That's a very thin story. It's not very robust, it's not sturdy enough for the Pivots in terms of life and it's exhausting. So yeah, that has become a mantra, a chorus, a theme song for me in disability.
And I think it's a very surprising experience to have to be suffering and to find joy in that same. I mean, I don't think it doesn't just like I'm going to find joy now when you're written the throes of something horrible, but there are those little moments where it happens and you're like, wow, these can coexist. And I think it's a muscle. Then we build tolerance for the hard stuff. We learn that we can hold the positive and the difficult side by side. It's like the price of admission to having a meaningful life, because if you can't hold both, then you're not joining this human family because that's what it's all about.
Yeah, and I feel like a lot of that, I mean, I think my sort of introduction to that way of thinking was through disability, but it transcends disability. That's a human thing. That's unavoidable. You said price of admission came and I'm thinking, yes, that's part of being here. Right? Like suffering and joy and learning to hold on to all that is all that is in a single moment. It's sort of a human gift, human experience. Yeah.
I agree with both of you so deeply. To me, disability was the gift or the opportunity to have to understand those things and to dive into that and to make it what I wanted it to be. It's when you realise that you have a choice, when you realise that you can embrace those different perspectives, a whole different vista starts to open up around how you experience everything.
Yeah, we let it teach us. This is a great teacher.
I think another interesting approach, like another thread that we can kind of tease out around these nuances of disability and the way we experience them is I want to talk a little bit more about how you both work creatively with this. I think when we think of, say, writing a book or making a movie, there's always constraints that we have to work with in those projects. And what if we started to think about disability as another constraint? Right? It's something that we work with. It's not necessarily a bad thing. A budget is a good thing. It kind of puts a frame around what you're trying to do. It's not an open sandbox or rebecca, you've spoken beautifully about poetry. How many poems are out there that have to fit a certain form? And look at all the incredible amount of poetry that's out there within this structure. What do you both think of that? And can we talk about a little bit more about that?
Kim, do you want to kick this one off?
Well, I think creative constraints are essential. I think if we talked about this in a pre meeting, that the whole box of crayons is overwhelming. And even in the Montessori traditions of working with kids, they actually only give the children one colour at a time because they believe that blowing our nervous systems open with too many choices, which I think I feel every time I walk into the cereal aisle at the grocery store, it's overwhelming. And so I actually think the friction in our lives, the friction of diversity, of disability, that friction is a really creative edge. And I experienced this in a pretty radical way when I started on Fixed, because it was originally going to just be a documentary and we were already two people into an interview when the pandemic hit. And I thought I was in the initial stages of learning from these beautiful people and I needed these lessons desperately. And I was like, oh, no, we can't stop production because I'm hungry for this information. And so what I ended up doing the pandemic became part of my disability and the lockdown. And so I ended up training everybody to use their smartphones and turning it into more of a docuseries where they answered questions remotely from the privacy of their own bedrooms.
And it was profoundly the best creative constraint ever, because I do not think the content that we had in those first interviews with a crew, whole film crew, and lights and schedules, brought forth the vulnerability and the depth that I was able to get over two years of people just sitting in their beds talking with their smartphone. So that's just a really practical example of how these constraints can surprise us in the most wonderful ways.
I love that example. What a tangible, vivid example of how a limitation can earn something very distinct and beautiful and kind of innovative. Right? We don't have a lot of examples of that. To me. When I think about this question. I think the first time I started to think of disability and maybe the potential limitations of disability as being part of a creative process. Was actually the art teacher at the high school where I was teaching that this exercise with the teachers and I don't know if this will resonate with anyone else. But it was very powerful for me. He had us in like a blank piece of paper. He had us divided into four squares and the task was to just sketch a cat four different times. I think it was a cat. For the first cat, you have 60 seconds and you draw you have the whiskers and the tail and maybe there's even a little sofa behind the cat. And you have all the detail there, right? And then the next task is in the next box. You draw a cat in 15 seconds, then in 5 seconds, and then you draw a cat in 3 seconds, right?
And so we have we're playing with constraints and limitations in each one of those squares. And whatever came out of that different limitation had its own flavour, its own personality, it had a different expression. And each sort of pinstripe had a different flair depending on what that constraint was. And I started to think about I mean, you mentioned poetry. I started to think about all the different art forms that we have and creative processes that we have that are sort of that sprout out of different limitations, of different constraints. Like the blackout poetry I would do with my students, where you literally are confined to whatever letters are on one page and even the order of the letters on that page. And then you just choose the very precise words from that page and that becomes the poem. And there's something artful and surprising about that. And so I guess I have come to think of disability and sort of the particularities of that experience as maybe the fingerprint of my expression or I'm a writer and so everything. And I've been disabled as long as I can remember, so everything that comes out of me sort of has that stamp on it in some way.
But I think that it's hard to imagine what that would look like or become without disembodiment. So I guess I just kind of see it as one part of or one layer of that constraint that it's going to create something very particular. And whatever comes out of that is its own thing, and the limitations are a part of that.
Yeah, go ahead, Kim.
I jump in. Just I think curiosity is what leads that. I think we can shut ourselves down and go, I have these disabilities. I know the first couple of years when with neurological disorder, I was like, I can't do anything. I am stuck. I'm totally stuck. And I had no curiosity for the actual experience I was having. I just wanted it to be cured and to be over. But once some of that settled and I deepened into a curiosity with it, and a curiosity into how my nervous system wanted to work, there were avenues, there were ways that I could soothe my nervous system and feel creative and feel purposeful at the same time. And I think that the door opening has to be led by curiosity first.
Yeah, it's like what happens when right. I mean, that's like the question that drives so much of creativity is like, what happens when we arrange it this way or we build it that way? I mean, I think about how much is built or created in this world on default just because it's been done before that way. But to think what happens when we try to create a documentary in a pandemic right. And then we rearrange things, or what happens when we try to write a book with this particular disability or this experience in the world. And I like that way of approaching it. Yeah, exactly. Like with curiosity. And it feels like there's so much creative energy behind that way of approaching it.
Yeah.
To add to what both of you said that I'd like to hear your thoughts on too, is, I think the other element there I don't know which one comes first, but along with curiosity, there's that invitation to become more aware. There's that awareness of this is not the only thing here. Something else is possible. And maybe the curiosity feeds that invitation to explore and to try something else and to see what's possible. If.
Yes, I would say the curiosity comes first. At least it did for me. And then the awareness, it was like having to be curious about the awareness, and then the awareness created sort of an open space for me to then play in that new sandbox, if you will.
Yeah. It's so interesting, Kim, because I feel like a lot of our experiences of disability are flipped in one way because you experienced chronic illness later in life. So you had all of this leading up to it. I feel like for me, it's strange to go through so much of my life with a disability and being so unaware of it, of what it meant to me, of how I was processing it, of how I would or wouldn't want to use it in my life. I was very distant from it. I think for me, there was a delayed, sort of like much delayed experience of becoming aware of something that had been a part of me for a very long time. And then maybe from that starting to have a lot of questions and this whole life to look back on and be like, wait a minute, what's happened? How did this happen? What does it mean? For me, so much of creativity and my drive as a writer is fueled by questions. So talk about having some rich material with a million questions and to dig through that felt urgent and kind of right and ready.
I don't know. It's so interesting to see how that has worked for you and ways that that would be the same and different for us.
You nailed it. Rebecca it is totally the opposite. Same experience, but the opposite. Because for me, I had to develop distance from it because the 24/7 was the experience. It was like, this is just like, imprisoning me. And my initial exercise awareness was to develop distance from it, to develop and turn the channel. And so this suffering can happen, physical suffering, and at the same time, this other channel can be happening sort of more about like what you said you grew up with. Sort of that channel turned already, and then you had to turn back to the ship anyway.
I know. It's like this beautiful little mirror we have going on here.
Rebecca my experience is closer to yours because I was born as well with my disabilities, and I'll have to find out who the doctor is. But there's a famous doctor at the Rehabilitation Institute of Chicago, it's now the Shirley Ryan Ability Lab, who would tell all the parents when they had a child who was born with a disability. He was 100% convinced that all of those children were born whole. They felt whole, they acted whole. And what happened is, at some point in their lives, they started hearing stories about what wasn't correct with them, what wasn't what was left out. So I think your journey is kind of going back, at least in part, and rediscovering. I know mine is that sense of wholeness that we had as children.
Yes. Bumps up my arms. Yes, I want to know who that doctor is also, because in my experience, growing up in the eighties and nineties, I don't know how many doctors had that on their radar. Even.
So, we'll find that and share it. But I think that's a great transition point, too, to talk about stories and get a little bit more practical. The stories that we tell ourselves, as I learned from the great Seth Godin, shapes our reality and the boundaries it sets the limits for ourselves that we think are there. So from your experience as creators and amazing human beings, can you help us gain a better awareness of what those stories are and how we can start to tell them a little bit more effectively?
Rebecca, do you want to start this one off?
Let's do it. There are a few things that I could talk about this into the afternoon, so I'll try to not ramble, because storytelling to me, is like the most powerful tool that we have. I think it shapes the worlds we live in in tangible ways and in more abstract ways. But I think a lot of the work that we are doing as disabled people is shedding the stories that we've inherited. It's the process of shedding. You just spoke of the doctor who anticipated that coming for these kids that were growing up with disabilities. But shedding the stories that we've inherited, whether that's a medical story or a cultural story or a familial story or some braid of all three of them, when it comes to disability, in my experience, there are few stories that we get to have, and those stories are really flat and one dimensional stories of tragedy or triumph, of overcoming an inspiration or heartbreak and loss. But it's very rare that we get to be a part of a story that is full and rich and complicated. I think that there are so many ways to go about that process of shedding, and I think continually shedding the stories that we've inherited.
But you will just speak to how that has gone for me or what that looks like for me. I think, to be honest, I think a lot of it started in therapy, a lot of time in therapy, and part of the work of that was this process of going back and noticing what those stories were. I think when you grow up in a world where there are so many stories written over your body and speaking for you and about you, you don't even notice that their stories at all. It just feels like, this is the universe, this is the world, this is true. And so for me, going back and reflecting on what were those stories that I learned and was told and started reenacting myself, who did I believe that I needed to be, and what box do I need to fit into? So therapy was important in that. And part of what I was doing in therapy, but also as a writer, was learning to hear my own voice and know what was my story and what was true. Part of what we're doing is shedding these stories.
Also another way of thinking about that is this quest to tell our own true stories. What does it. Mean, how do we go about doing that, telling our own true stories to ourselves and if we want to, other people? So part of it also for me, I started writing a lot, trying to find what that voice was that felt true and felt an honest reflection of my own story and experiences in the world. And a huge part of that for me was also reading and finding other voices that had a similar ring of truth and honesty to them. I think one of the first books I ever read where I was just sort of my breath, I lost my breath in sort of this feeling of recognition was Lucy Greeley's Autobiography of the Face. So Lucy Greeley grew up with cancer. I don't think we've talked about this. I also had childhood cancer is why I am paralysed. And so I grew up in hospitals with chemo treatments and surgeries and so did Lucy Greeley. And reading Lucy Greeley process. Her own experiences growing up in a hospital and what that meant to her and how complicated that was and where pride would tangle with shame and how connection was also there was this unique connection with the patients on the floor that she lived in.
But this like acute isolation out in the world. Like how all of this was happening at the same time. I felt like I was able to understand my own story more through listening to and connecting with these other stories. I started writing a lot on Instagram around that time too and so I was sort of posting these tiny little snippets out into the world of faceless people. I didn't know who was reading them, but I started to connect with people in that space too. So not like published authors, but just people living their lives who were able to say Me too, or able to say like oh yeah, I know that and also this, or also I felt this or this was my story and just kind of surrounding myself with people who had actually experienced something similar and who knew the world the way that I did. Help me figure out what my story was and where my voice was and what was true. So think it can look like a lot of different things. But for me. I think therapy. Writing myself. Learning to hear my own voice and tangled up in that.
Connecting with other people. Reading other accounts and narratives. I think the last thing I'll say is in that process. To go back to the theme I cannot get away with of the both end. I think I started to recognise when I was hearing a story that I inherited instead of tapping into my own true story. When that story was one note. When that story was only one thing. When it was flat. And that continues to come up for me. It's not like a done thing. Like I figured it out, I know my voice and I know the stories like I'm constantly I just became a mom. I say that two years ago, I became a mom. It feels new still and it's the same thing. What is a mom? What does this role look like? What does it look like for me? And having to figure out what is the story I've inherited about motherhood and what is the true story. So, anyway, I told you I could talk all afternoon. Kim, I want to know what you have to say about this.
Can I just jump in really quick for 1 second? Because I want to talk about this a little bit later and I want to hear Kim's story answer to this as well. But what you said that we should talk about in a little bit more detail afterwards is you had the awareness to choose which stories were authentic, inherited and which ones you wanted to take on. And so you also learned that the story that you told yourself today, maybe next year, it needs to be changed. So you are constantly building on that imagination, awareness, curiosity, muscle to keep questioning and exploring and figuring out what's true for me now that maybe wasn't what's true for me today, that I didn't even realise five years ago.
Totally. I'm so glad that you underscored that because it's not that I'm like trading the inherited stories for this one rigid. This is the one true story that I now have that's not flexible enough for longevity of life. We're constantly and continually shifting and figuring out the meaning of this and that and finding new connections and yeah, I'm so glad you underscored that, cosign Rebecca.
Everything you shared, I wholeheartedly agree with. So I want to underscore, though, that the importance of writing your own story, writing your own story, telling your own story because of the fact that it's so often written for you already through the media, through other people's lack of education. And when you I just finished a video on advocacy and one of the subjects has chronic fatigue syndrome and she talked so eloquently about the process of advocating for herself with Congress, with the Senate, and how powerful that has been for her. And she also wrote a book and she said that when she does this, she is reinstalling the rug that has been ripped out from underneath her, giving her something to stand on and say, no, this is what is true. I know what is true. And so you're building a foundation for yourself that is true and not allowing this out here to build that foundation for you. So, anyway, I think that's the value of telling your story. One of the things I want to add is, for me, the importance of metaphor, because sometimes our experience is really hard to explain, it's hard to even validate, it's hard to understand, it's hard to understand suffering.
So when we look to nature and we look well, specifically nature, I think, and art, we can find those metaphors that can help us understand our own experience because sometimes the understanding isn't there. Like the Kinsugi example. Again, I think my friend Rochelle learned about Kentucky and was all of a sudden like, oh, I have light coming through these cracks. Dylan is another subject who has very progressive ALS. And we did a video that basically had people or their health AIDS film images in Nature that described their experience. And for him, he said because he doesn't move, he's not mobile anymore. He said, since I don't move, I have a lot in common with trees. And he sees the trees are motionless until this invisible force moves through them, animating them. And he feels similar to that. He's this stationary tree until this invisible inspiration moves through him and brings him to write a poem or an article or to email a friend or to text a friend. So he was able to sort of empower his own stationary experience by relating it to these beautiful trees outside of his window. So I would add, when we are trying to understand our story, start to draw metaphors that can help us really then articulate what those experiences are.
And I think it's easier for people to understand too, then that is so powerful.
Kim. I love that.
Yes, that is. And it's also we can use this in all parts of our life. So, for example, Kim, I would imagine and again, I want to ask you about this, but I would imagine that becoming a better storyteller yourself and becoming more aware, exercising your imagination or curiosity or sense of wonder has helped you to, as an entrepreneur, to pitch the next idea to whoever it is that you want to do the film for. It's made you understand yourself better. I can see that as a business owner, when I communicate with clients, that's constantly improving. And you're looking to nature, you're looking to Japanese culture. So we are looking in all these directions with a sense of wonder and curiosity. What can I learn from that? How can this help me in some way and the things that matter to me, how can these things help me do something better or just appreciate this experience that I'm going through now? So how has storytelling improved your ability as entrepreneurs to say, hey, let's do this project now?
I don't know if this is what you're getting at, but this is what it makes me think of. I feel like there is something about this embodiment that from the get go, whatever the script is in front of me, it already doesn't feel sufficient. Like, I feel prompted to create something new because the old model doesn't seem to have space for me or it doesn't work for me, or I'm lost in it. And so there is sort of this push or this prompt from the get go for me, often to feel motivated to create or make something new, because whatever already currently exists, there's no space for me in it, I guess, is how I would say that. I don't know. Kim, what do you think?
Can you maybe rephrase the question just a little bit? Just so I want to make sure I understand it?
Okay. So, Rebecca, I think you answered the question. That was a great answer. What I was trying to draw at is, say, five years ago, when I, as a business owner, as a human being, am talking to a client about what I do or what my company does. That story has shifted over the years. It has improved because of all these other things that I've been doing, whether it's podcasting, whether it's meeting new people, whether it's joining Seth Goden's AltMBA, all of these things have helped me become a better storyteller and understand the value that I bring to the table and the value that the people around me bring to the table in any project that I'm engaging in. So I think I was just trying to see if have you noticed that as you've engaged in more projects, started, created more projects? Have you seen your ability to sell them, for lack of a better word, or to pitch them or to communicate the value of them? Has it improved?
Yes, 100%. And I think for me, for me, it's the pool of subjects, the pool of conversations, and the diversity of experiences that I'm drawing from now that aren't just my own Kim Warner experiences. So I think there is always more validity and more universality, and all the synapses start to make those connections in our brain that are coming from just a vaster pool of experience. And so when you're pitching a new idea, when you're pitching a project, there's definitely more resonance with those that are hearing the pitch, because you're not just going from, well, this is my experience, that could be something that anybody it doesn't have to just be in the world of disability. It's just expanding your horizons and realising that this world is what makes it beautiful, is the diversity of experiences. And the more we can learn about them, the better off we all are.
Yeah. Thanks for reiterating that question you saw, because that's a good one. And I would say really similarly to Kim, the more time you spend in the world connecting with people, the more kind of threads you see in the connections and those things between us. Yeah. I would say when I first started writing about disability, a lot of that writing and in that writing, I felt like, fundamentally like, this is a fringe experience. And that's what makes it interesting, is that it's so different and it's so far on the outside. And then I think the more that I wrote and connected with other people, it felt like, oh, there's something very universal about this experience. There's something very human about the experience of even feeling like you don't fit, or in wanting to find belonging, or wanting to be seen fully for who you are. There's a lot that's universal in that that I think that I missed initially, but has become clear with time. And as Kim said, the more people that you connect with, the more that you start to see some of these things appearing in different forms, in different shapes and much of humanity.
And can I add really quickly, I know we're running out of time.
No, we're good. Go ahead.
In the disability community, there's all these silos. In the chronic illness community, there's all these Silos. There's the Ms group, there's the Autoimmune group, there's the Quadriplegic group, there's so many different silos. And yet the experiences are wholly very similar. Not the physical experiences, but a lot of the accessibility problems, a lot of the social emotional issues, definitely the spiritual struggles. There are so many places where we share experiences, and I feel like that is, at least in my opinion, that is more valuable than creating more tribes, unique tribes.
That seems to be like a long arc for disability justice is this recognition of like, oh, we're part of the same we're part of the same fight here. Thinking in the early days of disability activism, it was like blind folks and people using wheelchairs and desk. People didn't see themselves as part of the same group. And then a lot of ways, sometimes they don't fill. But the power that comes with recognising, some of those overlaps has been transformative in our world. And I think that kind of the bridge between visible and invisible disabilities is one that is hopefully starting to bridge more now than it has in the past. Because even connecting with you, Kim, and hearing your stories, I feel like there are new synapses in my brain that are firing and thinking like, oh, I see, look at this between us and see how powerful that is.
Yeah, I agree.
And it's my hope, and I think we're making some progress, but it's my hope that those connections and those silos that we can the next bridge is between people who have a disability and the non disabled. Let's make those connections and let's see our stories as a really complex, rich tapestry and learn from them. And that's the next step. So there are so many. I see it in my career too. I see it just in industry in general, everybody's working in silos to some degree, and the people who tend to excel or to make those connections and do something interesting are the ones that are looking to other places for inspiration and for ideas.
Okay, I have two little thoughts. Can I say two little thoughts?
Yes.
I didn't know we were running out of time. I'll try to say this fast. First thought I have is like, yes, absolutely. The more that we zoom out the more that this conversation is really just about bodies and access. We are all limited to the human body that we have. We all age, we're all kind of shifting in and out of different modalities and abilities over the course of time. That is part of being human. And so, yes, there's like, this part that quest becomes a human quest. I also think, and this is the second thing I wanted to say, and it comes back also to what we were talking about, Kim. And it's also the theme of both ends. I think it's a both end because I think part of it is looking at that big landscape and saying, we are a part of this altogether. But I think there's also something really powerful in the recognition of where we're different. And again, I feel that way with you, Kim, when you're talking, like, noticing the ways that our stories overlap, but being able to sit back and say, there are parts of your experience that are really different from mine, and it's important that I recognise that and feel that and see that.
I think of the way that you've talked in the past about the difference between being visibly disabled and having people flood you with offers for help and then maybe having an invisible disability, and nobody is offering help or even believe in you when you say you need help, right? So there's a tension there that's worth noting. And I guess the big picture idea I guess I want to express here is that the recognition of the ways that our big picture quest for access and some of the overlapping experiences of being human in a body are the same, and then also the ways that they are different, like, both of those things feel so important.
I think we have one more question to go. We do have the time and I think this is a great transition. There's a quote from Fossil In and Duffy and Lisa Lewis from Omnium mentioned this quote last Friday, and I think it's beautiful and worth repeating. Diversity is having a seat at the table. Inclusion is having a voice. Belonging is having that voice be heard. Both of you, at least this is how I see it. Correct me if I'm wrong, but both of you are reclaiming your stories and your work, but you're also doing it both. And in the spirit of belonging. And Rebecca, you had a beautiful quote where you said, we are all less equipped without these stories, and yet so many people think, here's a book about somebody with a disability. I'm not interested in that. Why should I care about unfixed media? Chronic illness doesn't pertain to me. Where do you both think this disconnect is coming from? And besides what we've done today, how can we help shift this narrative?
I love this question. This is what I think about every day, and it's largely why I even started on fixed because the disconnect is that our culture promotes perfection and answers uncertainty and fixing positivity at all costs. Triumphant narrative, art it's endless that our culture does not celebrate uncertainty. And it's scary, right? If we could get all philosophical here, but uncertainty is scary. So our first response to loss and grief and suffering is to try to fix it. And I think that's good and natural, but we need to go further with it in the presence of loss that can't be fixed, which is what we can't do with disability. We have to take it the next step. We have to want to step in and learn. And for me, the job that we have as storytellers is to show the larger universal themes of disability that literally are universal. And that's why that question, why we matter, is so valuable to me because I have learned from this community and this work, these larger themes are solid.
Okay?
So if you're an able bodied person listening to this, tell me if you can't learn from these things that the disabled population addresses and works with and grapples with every day. Solidarity within community, development of adversity coping skills, beauty that comes from suffering, freedom from perfection, ingenuity, finding purpose outside of being a human doing and productivity, focusing on living well instead of having to live perfect. I already said that. Emotional agility. I mean, it goes on. I don't think that these lessons are.
Unique to the disabled population.
So we have to somehow turn this in a new light because it's really hard to get them through the door, but once they're through the door, I think they'll go, wow, these are leaders. This population of human beings are leaders for all of us. They know how to deal with a pandemic, for crying out loud. That's old news. No big deal. And so I feel like we just need more opportunities for these stories to get out there.
What am I going to add to that? Kim I tend to get a little bit philosophical about that aversion that you mentioned, Gestapo. Like that belief that these stories aren't, for me, similar to what you said. Kim I feel like so much of that is like a deep fear of something, fear of the unknown, fear of mortality, fear of perceived frailty and weakness, of the inevitable ageing of the body. There's so many things that there is fear behind, and I think those are fears that must eventually be addressed. Those are fears that are afraid of what it is to be a human. At some point, we have to deal with that, and then if we don't, our lives are diminished. We're less equipped for whatever we're going to confront and engage along the road. So I tend to think idealistically. And hopefully that as we move in this direction of disabled people with disabilities and chronic illnesses being integrated into our world. All the corners of our world part of it being in the forefront of the storytelling in media. In films and books. And also in leadership roles in our places of work and our teachers and our doctors all sharing and being a part of the world.
I realistically hope that that translates into a larger revision of that story of what disability means and what there is to be afraid of or not afraid of. I hope that works. I think in order for that to work, part of it is the people who move into the space to be able to articulate that and express that. I think there's a lot of pressure, real and imagined pressure, to minimise that and hold that back and just try to show up as similar to those around you as possible and hide the parts of you that are disabled. And I think that there's something really powerful in being a part of the world and having disabilities be a part of it and not hidden in a part of it. Does that make sense? So I think that's probably why a lot of you and all of us, all three of us are motivated to do the work that we do right so that we're part of the world. And also it's clear how disability is a part of that too.
So before we get to the Q and A. Do you both have any tips or ideas beyond this amazing conversation that we just shared. Which is full of tips and ideas if people go back to it. But some practical tools. Some ideas. Some exercises that we can go back and work on to become a little bit better storyteller or to start to think about. Become aware of. Spark a curiosity of what are the stories that we've been telling ourselves that maybe aren't true or limitations that aren't really there. But we think we are. We think they're there. Any tips, tools, strategies that you can share before we get to the Q and A?
Kim I think I'll just get on my soapbox. But turn on your smartphone and just start talking to it. Because when we hear ourselves, first of all, it can be very profound to hear ourselves and don't share it with anybody else. Just turn on your smartphone and answer a question. There's plenty of questions out there that I put on unfixed that I've asked everyone else. Look at one of those and answer one of those questions for yourself. One of them is, would you give up everything you've learned from your disability in order to be completely and forever cured and reflect on that and answer that question for yourself and then play it back and listen and then do it again a month later and see how that's changed? I feel like part of I don't know, I don't have very clear thoughts until I put them down. I feel like my fingers are my brains. My brain doesn't think. My fingers do or my mouth does. So sometimes the thoughts aren't really formed and we think we know our stories, but then as soon as our fingers start moving, maybe, Rebecca, you feel the same way, then you're like, oh, that's how I feel.
So just do it. Just get it out there and then there's no need to refine it. Just be a compassionate, loving witness to your own story.
I love that so much. For me. It would be like. Yes. As soon as I have my fingers moving on the keyboard. Like. Something is revealed to me. I would just the only thing I feel like I can add to that is to say that as you are expressing that story in your smartphone. In your smartphone. On a screen. In a journal. Just reminding yourself your story doesn't have to be one thing your story can contradict. Your story can change. For whatever reason, that seems hard for us to believe sometimes. At least it has been for me.
Fantastic ideas. Thank you so much. Helena, are we ready for some Q and A?
Yes, definitely. This has been so fantastic. I have been taking so many notes and enjoying this so much. Thank you. Thank you for such an incredible conversation. And don't just take it from me. I'll just read you, for instance, a comment here on the chat that is from this person who has been in every one of the programmes in the series, and she says, Today is the first time I realised how connected we all are. Bravo for making these conversations more open and authentic. So thank you. Just bravo to you for making these conversations more open and authentic. And then there's a question that says you briefly touched on this, but maybe going a little bit deeper. Do you define disability as only physical? Can you speak on mental challenges like trauma, anxiety or depression?
100%? I do not put silos around those two. In fact, I'm actually trying to pitch a mental health mini series right now, mental Health Disorders miniseries, because I believe that disability is the creative challenge that we experience to navigate through the world. And whether that's physical body part or an immune system or a mental hurdle or chemical imbalance, all of those things are creative constraints on our lives.
I'm so glad for that question, because it's important. Yes, I agree with Kim. Everything that you said. It's important that we emphasise that disability doesn't only look like wheelchairs. I feel like, as the wheelchair user here, I feel like I know I'm technically the symbol on the accessible parking spaces, a wheelchair for the restroom, but disability is infinitely varied. It has so many forms of expressions. The definition that makes the most sense to me is living in a body or mind that doesn't fit into the build world and that can take so many different forms. The built world being our physical structures, but also the ways that we have conceived of what work is, what it means to be a worker, how our health care system works, what it means to be a student. We built the world to fit this sort of imagined, normal body in mind, but there's so many of us that exist outside of that that don't fit into that. And so that can take an infinite number of shapes. Sometimes wheelchairs, sometimes mental health.
Definitely. Thank you. Thank you so much. And that prompts me to ask Gustavo if you would like to share a little bit about your community, because your community is precisely for, if I understand it correctly, to understand and to fit in the world the way we would like to be, the way it can be built.
Yes, absolutely. And we have created a community that we will put the link on the chat, but if you want to come meet Kimberly and Rebecca and the other panellists and some other terrific people there, ask additional questions and engage. We are trying to build a connection with each other to break out of those silos. Let's see what we can do together. I like to frame it as potential. I've always been, so my experience, whether it's getting picked last on the basketball team or being judged by a physical appearance, I think it has taught me to understand and see the potential in other people better. And so that's part of my mission, is how can we explore with each other, how can we engage? How can we learn from each other and start to make those connections and amplify each other's work and learn? So, yes, this community, I think, is going to be a fantastic place for doing that. The podcast was kind of the kick off for all of that, and it's evolving into something else, and I'm really excited to see where it goes from here.
Well, we're very excited too, of all the potential. Definitely. All right, so one last question, super fast. How much of individuals not wanting to identify as disabled or have a label or seek clarity of their ailments, interferes with the nondisabled being able to relate with the disabled population and come together? Do you need me to read that again?
Yes, please repeat that. Kim, if you got it, go for it.
I think I do.
I saw that come in a little bit ago, so I was like, sorry to wrap my head around it. Yes, I think it can be problematic, but I don't think it's on the onus of the person with a disability to share anything more than they're comfortable with. And that can sometimes take years and sometimes never. And that's totally okay. There's a whole community of people that will represent you, and so I don't think that it's your responsibility to define yourself in any particular way other than what you're comfortable with sometimes. I know I'm not in an environment that is going to be receptive to the fact. That I'm busy all the time or it's going to be laughed at or I'm going to get a dumb blonde joke. And so I don't always just come forward and just make the announcement. And I think that it's just important. It's a case by case scenario.
Yeah, I think so, too. I think that a lot of times, I think in large part that people might be hesitant to claim that word or identity because on the one hand, we kind of created that as a negative thing. Culturally, a lot of times people see that as negative quality that you don't want. Right. So why would you want to claim that? If I think of myself positively, there's a lot built into the ways that we perceive what that means. And so I think part of it is culturally creating a word and then putting all of this garbage onto that word, and then I don't think we can blame people who maybe don't automatically reach for it and claim it. But I think also what Kim is saying is that in really tangible ways, there are ways that people might be punished or harmed by owning that or claiming that or admitting that or revealing that in any way. And so, yeah, it's not something that I would cast any judgement on someone for having that reaction. And I think it's a really personal experience, living in a body and a mind. And so that's something we decide for ourselves.
But I think in the meantime, I feel like it's important to do the reframing of what this work means and what it can mean, so that we can live in a world where people who do find themselves with a disability don't feel weird or ashamed of holding onto that or owning that.
Elena, do I have time for a very quick story on this topic?
Absolutely, go for it.
I can do it, hopefully under a minute.
Definitely. Cool.
I could never hide my disability, so I saw it as it's always a case by case basis, but I try to frame it as a potential opportunity and I look for those opportunities to connect and engage. So I was at a client meeting several months ago, and this client, they have a foundation where they work with people with disabilities and help give them independent skills that they need to thrive in the world. And I was meeting with them and their kids were there and their sister's kids were there and they're younger kids. And as we were getting up to leave, we're shaking everybody's hands, we're saying hi to the kids and one of the young girls was staring at me and looking at me kind of awkwardly, trying to figure out what's going on with him. And usually that's my moment of I'm going to jump in. Before I could even do it, the mother comes in and says, he's just different. He has some differences that you and I don't have it's all good. Get over it. Just so matter of fact to the point, like, no big deal. It's just something that's different.
He's got some different limbs than you, he's still a human being, he's still Gestavo. It's all good, let's move on. And I personally was really impressed by that because she didn't make it a thing and she still had that teaching moment. So, to me, I don't expect that from people. But when I see something beautiful like that and interesting, it's nice to see that other people are understanding it.
Wow, that is the perfect story. If we all agree to close this, I don't know what else to say other than that is absolutely beautiful. And each and every one of you in here are beautiful. And I am just in awe of what you brought here to the library today. So thank you, thank you, thank you. Thank you so, so much. And thank you to each and every one of you who stayed one more minute past the time with us. I hope that you will agree that this is incredible. If you think so, please give us your feedback. Our wonderful team is going to post the link to the feedback form on the chat right now. It won't take you more than one or two minutes, but please do give us that feedback because that enables us to know what we're doing well, but also to improve and to bring you other awesome speakers that you suggest and to do things better and better every time. So have a great afternoon, everyone. And one more thing. We have the fourth programme on the series next Thursday and that is going to be with entrepreneurs and Elaine Poetfeld, who is an independent journalist and the author of a book called Tiny Hang On Tiny Business, Big Money and the Million Dollar One Person Business, that's the other book is going to be interviewing them.
So it's going to be a fascinating panel and they are going to share their stories, they're going to share their values, they're going to share everything about entrepreneurship. So I hope that you can join us again. That is next Thursday, the 28th at noon. And other than that, have a wonderful, wonderful and beautiful afternoon, everyone, and see you next time. Bye. Thank you to my team as well, and to each and every one of our panellists.
And Gustavo.
Thank you. Bye.
Thank you. Thanks.
Helpful Link:
BIZABILITY SERIES: How Creatives, Entrepreneurs, and Non-profits Are Changing the Way We Understand Human Potential: https://www.nypl.org/bizability