Calum Glendinning Clark: It feels like empty numbness.
When I look away, the space expands.
Fill the space with an image. The muscle fibers contract and tighten.
The absence of sensation causes my right leg to become invisible. My eyelids feel heavy, but when I look down at my leg, I see it as though it belongs to a different body.
When I look down, my toes were crushed into the step in front of me. The leg is thrown forward onto the next step. It's the space where I feel as though my leg is missing, a space that I can occupy. Maybe I should just get off the stairs. Maybe I should come back again and try in a couple weeks.
Breathe through your head what the breath fill and expand throughout that space like echoing sonar.
Breathe in through the nose and send it through your forehead, and out through the space where your left hip is left behind. This try, this try, though. This try, this one for sure. I can hear my breath from the inside out.
But it's like a static echo.
When we look at the world around us how it is built the design of environments use of technology, stairs, toilets, doorways, public transport, health care, employment. In its simplest form, we see a body and its most complex form, the construction of a body. Such a constructed body is based off of an assumed majority or norm, branching back to industrialization and eugenics. What about the 1 billion people in the world who are differing or varying or dissimilar or unalike or divergent.
My name is Calum Glendinning-Clark, and I live in a divergent body as a walking paraplegic and a writer with a brain injury. Pardon the paradox. I am to raise awareness about one of the largest minority groups in the world. This podcast will explore and discuss the barriers surrounding accessibility and possibilities when it comes to disability support, recovery and community.
It will focus on individuals experiences, identifying and navigating these barriers, along with the services in place to assist in this process. It will also discuss the emotional as well as physical impact of these barriers in the day to day lives and experiences of people with a disability. Stephanie Behr and Theo St. Francis are two people whose unique stories and expertise helped lead them to release a book called 'From The Ground Up', which gives spinal cord injury athletes and any movement practitioners guidance on how to harness their own potential when it comes to spinal cord injury rehab and recovery. Theo and Steph met at one of the top spinal cord injury recovery centers in the US. With a combined 15 years of learning, they came together to start the project Zebrafish Neuro, and write the book 'From The Ground Up', a human powered framework for spinal cord injury recovery. After inpatient discharge from the hospital and rehab, it is a common experience for the responsibility of finding recovery resources to fall on the individual with a disability, or their friends and families. If you are at home and want to see what this is, like, just google 'spinal cord injury recovery' and see what comes up. It's largely surgical interventions or medical information, as opposed to recovery processes or things that you can actually do now. If you are having this experience, or know someone who is, or are even years into your injury and want to start to integrate recovery into your life, you can find Steph and Theo's project under the Instagram handle @zebrafishneuro, or on their website, www dot zebrafish neuro dot com. It is worth me mentioning that chapter one of the book is available to access through these online platforms I mentioned for free. This is only one of the reasons why this resource is so important to me and has had such a massive impact on my life and my drive to increase awareness around this disability. I feel extremely privileged for Steph and Theo to have given me their time and thoughts in this conversation. The recording you hear was recorded from three different locations simultaneously. So please pardon the variation in sound quality.
Okay, guys, so if you could please explain how you came to the name 'Zebrafish Neuro' and it's metaphorical purpose?
Stephanie Behr: Kind of about the time that Theo and I were formulating Zebrafish, the research studies were just coming out about how the animal zebrafish were able to heal their own spinal cords. So zebrafish, if you didn't know are used in a lot of medical research because of their I think they have a like a quick gestational period or quick kind of lifespan. And so they can study them. But then they're also transparent, so they can see interventions happen in action. So because yeah, in vivo, so they'll they're alive, and then you can still see what's going on on the inside. So while all this research was coming out about spinal cord injury repair, and the zebrafish, we just said, you know, that's kind of, first of all kind of trendy, we're in the area of California. So it's all like tech kind of names. And we thought, Well, how cool is that you can heal your own spinal cord. So self healing, also, feeling and seeing the transformation in real time.
CG-C: Yeah. And then it kind of came out later between, you know, the play on words of zebra and fish, and Theo and I's partnership, and so many metaphors with that as well with Theo being a swimmer and me sort of being the land animal, and I'm very black and white and systems, and Theo is a little bit more fluid. And I call like, slinky. So, um, it kind of works both.
Theo St. Francis: I'm pretty wobbly when I stand is what she's trying to say so it sort of looks like a fish out of water sometimes, flapping back and forth.
SB: Yeah, so the metaphor is quite, you know, literal on the play of words, and then also represents the research that's going on, or the research that's currently going on, but then kind of at the forefront when we were starting Zebrafish.
Yeah, I love the name. And I love this part that you touched on about the transparency of the zebrafish as well, because then the development of the tool is I hope, I'm guessing, hoping for that transparency to illustrate the process so people can see. It's visible or tangible in some way, as opposed to just bombarding people with information.
TSF: You hit that one on the head Calum, and one of the parts about that is being able to watch the process of healing occur in the body of a zebrafish as its healing and spinal cord in the several weeks that it can do that from a full severing, but analogously for us, one of the things that we are so big on which I think we'll get here much more into in a minute, is this notion that from, from awareness, all things come and how being able to watch what's going on in your own body as it's happening, assess it make judgments based on that on your own path toward neurological rehabilitation is such a, an instrumental part of a successful recovery program.
CG-C: Yeah. And that's the kind of next thing that really interests me as well as how what brought you both, not only to come together to start the project, but to step back and start to listen? I mean, yourself Theo with a spinal cord injury, was that a part of the thing that introduced you to that process? Or, you know,
TSF: Without without question, um, yeah, so what, what compelled me to listen well is a relevant question, because in the beginning, like so many people who, you know, just want to get back on their feet, they just want to get better, you know, they have their life turned upside down, because they were they were living things, normally. And at some point, they have this paralyzing injury. And, you know, so many things are thrown upside down. And once you once you come out of the hospital, and maybe you've had some recovery, or maybe not really any particular muscle recovery to speak of, but at least things are stabilized such that you're beginning to think about how am I going to rehabilitate from this injury? You know, there is a lot of emphasis on getting the function back. And becoming unpair alized. Which makes sense, because who wouldn't want that? Of course, of course, that's what you're focused on. But I, you know, for my own process, which is what I can speak to, it took my really coming to terms with the fact that just trying to get standing again, was never going to bring me back the life I wanted, nor was it even going to get me standing again, I really had to, I really had to rewind in terms of my priorities and take things back to the fundamentals. In order to, you know, perhaps I could use that standing or that walking posture as my end goal. Maybe that was kind of, like, way off in the distance. But I had to release the standing posture as an immediate goal, in order to focus on the basics, so that in the end, I could get to that place. And that, that I, you know, you know, kind of begrudgingly, because, you know, I'm thinking I just want to get standing in here I am rolling around on the floor, back and forth. That is really what what forced me to learn to listen to my body. And in the end, it's what made the most difference for my recovery.
CG-C: Yeah, definitely. Um, I think that's so interesting. what compelled you to listen to listen Steph?
SB: Well, before I jump into that story, it's not quite as not quite as interesting. But Theo and I talked a long time ago about the language that's used around SCI recovery and almost kind of aggressive words like 'conquer paralysis'. Oh, 'fight, fight paralysis', 'fight SCI'
CG-C: 'Overcome' is my least favorite.
TSF: Hang on to that. We're gonna talk about that in a second.
SB: Yeah, and and Theo and I, we, when we kind of like we're looking at the language that's used around recovery and how you describe being being recovered if that ever, you know, is a state that ever comes like, why? or Why does it have to be a battle? Why does it have to be hard? Why can't we work with the body and listen to it, as you're saying, and let it be kind of a journey as opposed to this end goal, this thing that we have to, as you said, 'overcome' and be a different person or a different human. On the other side?
TSF: Calum you mentioned, what um how overcome is is so distasteful for you. Which, which is hilarious. And I'll tell you why. I don't even know if you know this, but I the kind of name that I I called the stage of my life, which was my recovery, given that My name is Theo, t h e o was 'the overcoming' because it was my name and it was the overcoming of this injury for me. And it's it's interesting, you know, I honestly, that's sort of like that was several years ago and I you know, I sometimes see the shirt that says 'the overcoming' on it or you know, the the website no longer exists, the Instagram handle has been changed. And so every once in a while, like I come across it but you know, having, having you mentioned it, just then It's, it's interesting that you can kind of look at that the word 'overcome' in a couple of different ways. I think I saw it, then as you know, I want to transcend this, this injury that I have, and be able to, to carry on and do the things that I want to do, despite what happened. And in many ways, that's true, but I think you can dig a little bit deeper and just look at it in terms of, am I am I an enemy of my body? And of my past? Or am I, you know, an ally and of my body and my past, and I'm open to discovering kind of what they have yet in store. And I think, you know, is it the transcend? Is that the transcendence of that life experience? In a, in a in a in a fierce and antagonistic way? Or is it the transcendence with a recognition of what happened and how you're going to move forward? And so? Yeah, there is just like a couple different ways of of seeing that. But-
CG-C: Yeah, that's my Yeah, I see it, it totally in the same way as well. Like, rather than dampening something or trying to turn down the volume and just look in the other direction trying to integrate it. And yeah, listen, and just, okay, let's work together as opposed to, I mean, it's transferable into so many other aspects that surround the injury. I mean, we could go into trauma and the experience of trying to integrate back. But I think, if you look at it on the physical level, it's almost almost an illustration of what happens at a larger scale for me, I think. So interesting.
SB: Yeah, and Theo, if you look at your transition out of that kind of title of your life, or chapter of your life, how you titled that phase, was about the same time that we transitioned to this new perspective on how to do rehab and how to do recovery. So it's almost kind of like you recognized that for yourself that it wasn't going to be so much of a battle or something to overcome. But, again, transitioning into the new, the new system.
CG-C: Yeah. Was there a particular thing that brought you there? Or was it just accumulative over time? Or was it engaging with services and feeling that there was something lacking? Maybe that you started to see?
TSF: You're talking about in my own process specifically?
CG-C: Yeah, in terms of switching that perspective?
TSF: Without question, yeah, I had been doing a couple different kinds of therapy, which it seemed like they were working, and then at a certain point, they were no longer, you know, helping me generate new movement and allowing me to connect to new parts of my body. And I wondered, you know, is everything that the doctors said about the two year mark being the end of improvement? Is that all true? And that sort of began this, you know, immense self doubting of, here I am, you know, at that point, I was about a year and a half post spinal injury, and I'm thinking I'm nowhere near the, you know, as able as I, as I want to be, or as I think I can even manage getting through the rest of my life. You know, is this actually the end? And, you know, very fortunately for me, at about that point, I was, I was turned on to a variety of other techniques and ways of understanding my body and my movement and how to change both of those that really put me on the path that I am now. And Steph was there for for every part of that. And I think it was sort of around the time that I was making the change for my own rehab. She was making the change for how she helps her clients and her SCI athletes.
SB: Just I mean, Theo has such a story about his transformative process. I think for me, again, I was working. I was working at a an activity based therapy facility. And I don't know if your listeners are familiar with basically it's just a gym for people with spinal cord injuries and neurological conditions. But it was kind of three years into that when when Theo both Theo and I started learning more about facial systems and inter body connectivity and how non traditional modes of communication through the body and I was introduced to Pilates and the Pilates equipment and what that does for alignments in the body and exploring space. And I specifically remember watching one of my earlier mentor Her name is Alejandra Monsalve, I'll just give a little shout out to her. She, she was working with someone on one of the pieces of equipment and talking through her programming philosophy. And I just remember thinking to myself after that session, that it was so clear that I was barely scraping the surface of what was possible in terms of neurological healing for my clients. And what I mean by that is that up to that point, most of the systems and the protocols that I was using was addressing and building strength in the non paralyzed areas, or maybe just the little bit of paralyzed areas, but wasn't fully addressing the areas that people were interested in connecting to. And so from that point, was a huge switch and my thought process on how to approach the work, which turned to much more, again, like you said, listening to the body constant assessment, integration of the non paralyzed areas with the paralyzed areas, you know, if we're going to label them in that way, um, and just much more consideration for the healing aspect of the body, instead of forcing more reps and more time and more weight onto the body, it was more of this, like, slow progression adding in and through, and I get the question all the time. 'How, you know, what's the best way to, you know, what's the protocol that you use? Or what's the programming?', and I say, there's no protocol, because everyone's different. And it's really you have to develop this intuitive sense of what to do next. So it would be almost impossible for me to say, do these things X, Y, and Z. I mean, maintenance, that's easy. But in terms of progressing forward, it really has to be in the moment I make this decision. Or, you know, might me and my clli my client, and I'm an athlete, and I make this decision of where to go next, based off of what is happening right at that moment. So I know what Theo was saying is this constant listening, constant observation of what's happening in the body, which determines what comes next.
TSF: From our perspective, now, you, you, you can't really do recovery. If you're solely focused on just getting that end goal, you it really requires that you be present with what's going on right now. And making changes based on that, which makes it super interesting, because you never really know what's gonna happen in a session. And it sort of from the athletes perspective, it's sort of stokes, your curiosity about what's going on in your own body at every step of the way, because you don't know what it is that you need next, unless you listen. So So that's, that's sort of kind of where the process centric approach comes in.
CG-C: I love that idea of perpetual re discovery over time, without an end point, but rather, just listening. And that's what I loved about and what I think makes the project so unique in comparison to my a little bit of my exposure to the other services, but I guess at first, as to help the listeners understand maybe if you could define how a zebrafish neuro sees are recovery. And then my favorite one, MOMO.
TSF: with respect to Momo, that's mo m o, which is short for moving more on my own, which was something that Stephanie and I came to after a lot of chats and one particularly long one, where we tried to just nail down what actually is this recovery thing? And how possibly can we define it for such a broad spectrum of, of bodies and manifestations of paralysis. And so the moving more on my own, the sort of the three parts of that moving is, of course, what people are missing. That's clear from the outside if you're, you know, now using a wheelchair, there must be some kind of movement which you're missing. But there are also all these other things like sensation and, you know, impulsive activity, and reflective activity, bowel, bladder, you know, all of these things, which may not be as apparent, but what we found is bringing it back again, in fact, you can use movement to address many of those, if not all of them in some way. And so, the moving more on my own, that that moving aspect is not just the movement, it's really all of those other things as well which are Influenced by movement that you're doing in your exercise, as well as in your just your daily life. So the more aspect is, hey, that movement, whatever it is, get it into parts of your life, that it is not currently right now. So whatever you can do to expand upon your current abilities, whether it's, you know, it's standing in more places, rather than just at home with help, or maybe it's, you know, getting out of the wheelchair, and, you know, hopping down on the sand at the beach, I'm sure that's probably pretty big where you are Calum. Well, whatever it is, more means that recovery is not defined by the end goal is defined by continual improvement. And then the on the on my own aspect has to do with the fact that, look, I'm not interested in just getting good at doing these movements, when I'm at the gym, at the gym, working with a trainer, I want to be able to do these in my daily life, without needing to think about Here I go, I'm doing this hard movement, and I really have to focus on it. And so getting the movement to be driven by the athlete means that they are taking ownership, that athlete is taking full control over the choice to do that movement, the way that movement is done, and the expression that the movement has. And so all of those things kind of come to lead to fully kind of incorporating that movement, no matter if it's small, like sitting up a little bit straighter, or if it's large, like running, you know, running down the road, all of those things lead to lead to the movement being kind of internalized. And, as a result, a form of recovery.
CG-C: Realizing like you guys have said there, it's not about just do this as many times as you can until it comes back. It's not that linear. And encountering from the ground up, luckily, through I mean, through interacting with social media, and so on. Because that was the only kind of tool I could find that would work to lead me to new ideas, was a resolution that I found that worked for me, that dealt with that question of like. It's not just like, what can I do? It's not just about doing this a million times, and hoping for the best. And then being, being what some would deem is in a state of denial, because you want to rediscover your body, but rather at what point and where are the starting points at which you start to listen? And I love that about the book in the first section that it largely deals with, in a very sensitive and considerate way about accountability and starting to take ownership of a body when largely you've probably been surrounded, well, I can't speak for every athlete, SCI athlete, but for a large proportion, you've been surrounded by people telling you what you will and won't be able to do and how it will and won't look like. Yeah. So I was so fascinated. First off how I came to even interact with Zebrafish, as someone just in the suburbs in Newcastle with no access to any spinal cord injury, injury information. And what was that something that you consciously thought about? Like, how can we make this a tool that not is not only a solution, but people will be able to access in a different way?
SB: Yeah, Calum, I'm so glad you brought that up. Because that's something I thought of just this afternoon. And I was trying to think about why was this turn of events for example, when I was watching my mentor work with someone, why was this tournament of events for me, so revolutionary? And, and then I was thinking about, okay, well, how did I get my information back in that day? Like, why was this? This wasn't the information that I was learning wasn't new to humans, like this was stuff that was you know, this was movement science that was out there. It just wasn't being applied to the SCI community yet. And, and also with that, in, in my job where I was working, and similarly, similarly, the ABT facilities across the country, and probably internationally, people kind of just kept themselves you were kind of in your own bubble within each facility you had in house training, your continuing education was literally from the people that had just been there longer than you. And there wasn't a lot of sharing of information across facilities, or like going in or out. So and again, the context for For the listeners was this was before Instagram was a platform for sharing information, this Instagram at that point I think had just started and people were like taking pictures of food like that. So the fact now like so that's why the the, the new information that was coming into us at that time was so so radical. And actually it was so radical that I had to step away from that job completely in order to start fresh and really dive into it, I it wasn't really being accepted where I was at. So I kind of had to start fresh and develop the program on on our own with Theo and a few other individuals. But what's so cool now is that Instagram has given us such a great platform to share information, internationally. And that's where we came in contact for the first time.
CG-C: Yeah, exactly.
SB: And um just the idea of sharing information is so important to me, because I was so isolated in my first few years as a trainer, it was I like, you know, it kind of almost, it makes me really emotional because I felt so sort of, oh man. What's the word I'm looking for? I felt like I wasn't allowed to go learn anything. And I know Theo too, like these new ideas that were coming in, were not accepted. And so for us to be able to say, hey, world, like, look at this, this is how like, here's the information, and then people are actually receiving it. And we're having great feedback with it. It makes me so happy that we can finally share information comfortably and people are willing to accept the information. That was the biggest hurdle and and it was so frustrating for me back when I was first starting, I felt so I felt alone, really, I felt really alone in my process, and I was super young. I was like, just starting my career, you know, all you want to do is learn and get better at your job. And the answers were always just Oh, we'll go ask so and so they're just you know, in their in their office, instead of saying, hey, go to this workshop or go read this book. Yeah, so making the book for us was a really huge step for us to be able to share the information on a wider scale.
CG-C: Yeah, I think that's so interesting that your experience as a trainer, parallels much of my experience as someone with a spinal cord injury.
SB: Oh, wow.
CG-C: Like, in the way of I was just constantly good. It's not it's, yeah, okay. This is a new body. I don't know anything about this body. So I better start learning about it. Where can I read something? Who can I talk to? Who do I contact? I'm not looking for an answer. I'm looking just for information.
SB: Yes, anything.
CG-C: The response I got to that was very much Please be quiet. We don't have time for that, like, or, or how about you i don't know study something else instead to kind of distract yourself or look at look at something like turning the other direction, which is kind of the opposite of what we were talking about, about listening to your body and starting to relearn. And I think it's so interesting that there are so many peer led initiatives and recovery places and things, but not to as far as I know, the information that really empowers people is for some reason, kind of held back upon and that creates such a significant barrier to people.
TSF: Yeah. Calum, I would also be interested to hear if your experience parallels this, which is that it we often hear, you know, at least in the US, there's so little available for SCI, which is it's pretty true. I mean, if you, you know, break your shin or you have a hip replacement or something, there's like definitely more available in terms of resources. And it's, you know, maybe less severe than a neurological injury. So, you know, there's a bit more of a standard protocol, and there isn't such a huge difference of manifestations of it. But this notion that there isn't, anything that we can find out was one of the things which I realized after a certain point that if you define things that can help with spinal cord injury as the things which have been directly applied to spinal cord injury as opposed to understanding the human body or understanding, you know, inter interconnectivity of muscle systems more for example, then all of a sudden the scope of your inquiry broaden the scope of your inquiry broadens a lot. And you can actually be in to apply these ideas that that Steph was talking about that we were exposed to and began to dig into more to spinal cord injury in new ways. And so, you know, is that have you found in Australia and in your, in your quest for for rehab, that there's this kind of simultaneous- Hey, there's nothing available, but also will those those things that exist out there are not for us? So we're not going to even dig deeper?
CG-C: Yes, my experience was very, very much like that, in that all the things that were supposed to be specific to the neurological injury, or even a large proportion of disability specific services had a very fixed understanding of, okay, you're this level, you're incomplete or complete. So this is what life should really look like for you. And beyond that, there's not it's a waste of time really looking beyond that. And then, so you, like you describe, think beyond that. So maybe reach out to people who train people just with injuries in general, or, and then they're generally the ones well, in my experience, they were the ones that were willing to listen. And that's where I started. I didn't start with a spinal cord, injury specific trainer, I started with an exercise physiologist who just trains I mean, she trains wheelchair users, people with an amputated limbs throughout a regular mainstream gym. But to me, yeah, it was a solution. But that's emotionally, not something you might be able to come at, when you come out of an inpatient setting. And you don't want to go, you maybe you're still kind of in this state of cognitive dissonance where you're not really identifying with your body fully yet and to go to a able bodied gym would be a really overwhelming kind of experience. And I think that's not helped by people being encouraged to view themselves as you should pursue the thing services that are specific to this because they have a better understanding.
SB: Yeah, totally. And Callum, all I'll just add to that, too, from the trainer side. So when I started my career, right after college, I was dabbling and able bodied, fitness and exercise. But really, I jumped straight into the neuro kind of first thing. So I was working 10 hours a day just with SCI and neuro cases. But it wasn't until I moved to a Pilates studio, where my schedule started to become a little bit more balanced between neuro SCI, and what we might call able body but like still some kind of funky stuff going on. that I started-
TSF: What even is able bodied?
SB: Yeah, that's just the term we use, but just for simplicity, but yeah, it wasn't until I started to see, like, Oh, this is how we would train a human. And how can we use those concepts to also apply them in the SCI world. And what was the beautiful blend was that I had this breadth of different types of manifestations or presentations from the neuro population so that I could understand the context. But when I started to learn just human healing, and apply that that's where the magic really came in. So if you if any of your listeners are here, listening to the podcast, and you're working solely with one population, I get that niche and specialty. I love that, that that's great. But even still, to this day, nine years later, I still have a balance on my, in my business, where I'm working with neuro cases and SCI, but then I'm also working with these other conditions as well, and even athletes. So there's so much to be learned across the board, that we don't have to always think, oh, because this isn't an SCI modality it's not going to work for you. And that's and that's one of the reasons why we named the tagline for book human powered, human powered framework for recovery because it's not an SCI recovery program. It's a human healing program that's applied to SCI.
TSF: Yeah, something something else on that too. And Calum will probably appreciate this because I know how you like digging into what words really mean is what we do we say that, do I say "I am a person with spinal cord injury", or do I say "I had a spinal cord injury"? You know, if I, if I stub my toe for the next 20 minutes, am I a person with stubbed toenus? Or did I just stub my toe? and and i think i think that's important. Because, you know, from my perspective, I don't think about myself as a person with a disease going about my life impaired because of this disease. I think of myself, as someone who had an injury, you know, like I sprained my ankle, it's just the recovery from that is going to take my whole life. And yeah, things may never be the same. But that doesn't mean that I should think of myself as like irreparably altered. Even though from, you know, all outside perspectives, that is the case. And so I think and to connect to what Steph was just saying this, you know, a human powered framework for spinal cord injury recovery, means that you still regard yourself as a human with human movement, it's just we need to broaden what human movement is, because it is never black and white, and it's always shades of grey. And in that way, you begin to think of yourself as before I was unparallel, I was not paralyzed. And now I'm paralyzed, you begin to think of yourself as Hey, before I had certain kinds of movement, and now I have other kinds of movement. Let me see where I can where I can bridge the gap, or perhaps even exploring new areas.
CG-C: And I feel As for me, I think that's where the unity lies, I suppose is more in the experience of when I exist at this stage of a spectrum, what are the kind of barriers or or feeling or things that I face that do make me have a different experience? And I'd say nine times out of 10, for me, a large proportion of that isn't actually necessarily your physical ability, but rather, things like the built environment.
TSF: It's always the interaction of multiple of multiple parts you and others, and the environment and your emotions, and the tenor of the time.
CG-C: Exactly. But 'From the Ground Up' for me, took ideas like that, and made them very relatable for someone experiencing spinal cord injury in the way it take took all of those factors and how they're unified by movement. And then my favorite idea was the kinosphere and that the kind of metaphorical relationship there between your ability to elicit change or movement through the space around you. And then I guess, at a societal level as someone with a neurodivergent body your ability or your your sense of yourself to elicit change in the environment around you and what opportunities are afforded to you. And I was really curious, when I read it, I was like, this is genius. Like, how did you come up with this idea?
SB: Kinosphere was kind of explored by this woman, Irmgard Bartenieff, who Calum if you haven't gotten to chapter six yet where we talked about the Bartenieff fundamentals, but what's so amazing about her work is that she explored space and shape and body and relationships, both in the context of your physical body, and then your relationship of self to world and self to your psychological growth. And she so she lists out 'six fundamental patterns of body connectivity' is what she calls them. And then obviously, their physical manifestation. So how does your head and your pelvis communicate? How does your right and your left side? How does your upper and your lower patterns like that, but then also what do those mean for your psychological growth and your relationship to the world? So, for example, her first pattern of connectivity is breath. And so breath is the first thing you do when you are born. And that's an essential movement pattern that represents life. It's essential to everything else. It creates a metronome for me movement for rhythm, support, stability, all that in the physical sense. But then if you think about breath as being your first act as a human in the world, it also is what gives you purpose and identity are so identity and purpose. Yeah. And then you look at like, wow, how many SCI athletes have been on a ventilator or, you know, drowned in the ocean and weren't breathing for a bit and have had to relearn breathing mechanics, while at the same time re identifying with their sense of self and who they are now? You know, same same, but maybe just a little bit different. And then what is their purpose? Is it the same? Is it different? And so the intersection between movement and psychology, and working through trauma is so completely fascinating for me like I tell Theo all the time, this is where I'm going next.
CG-C: Yeah, yeah, that's what I felt like when I read it.
TSF: Yeah, I think I think it's also and Calum the book 'Making Connections' is absolutely something you will love to sink your teeth into. But I think it's also very natural for the for including in a recovery from, you know, very seriously paralyzing injury, because you do, you are forced to redefine your relationship with space and with your environment and with others, in so many ways because of that. And so, it, you know, it would it would be unnatural not to, to call attention to the fact that, hey, I want to achieve these movements again. But I also need to rehabilitate my relationship with space. And my real with my with the built environment. And I think as you identified kinosphere the word kinosphere, which I think is defined as the the region of space, which you're, you're able to have an impact on, is so I think fundamental for the goal of SCI rehab of being of feeling again, like you have control over the over over your body in the space around you. Because so much of the way that paralysis impacts the body is a shrinking of potential and a shrinking of impact and presence. And I as I'm sure you well know, that's something that you really feel when you know, you're you're sitting and everyone else is standing or your you want to you want to lead a group, but so much of how we just evolutionarily interpret leaders is the biggest and the strongest and most dominant. And that's that something that consciously you can, you can try to overcome, but it's not, it's not as simple as just reminding yourself to be confident. So thinking about that process, thinking about, you know, what has been impacted there. As you're doing rehab does matter a lot for how you can program kind of expanded presence and expanded confidence through the movements you practice.
CG-C: Yeah, no, definitely, that's exactly. Um, the idea that, I immediately became aware of this, because I knew intuitively I'm interested in movement and rehab, but I always felt this kind of separateness from a lot of the community that I would witness in this kind of, it didn't seem a lot of the time, like integration or like more of that kind of overcoming that we said, we discussed in the beginning and this encouragement to better replicate the able bodied rather than listen to the body that you have. Um, do you think that that is one of the like Zebrafish has obviously, you guys have obviously picked up on that and identified that, but I'm always curious as to why that's such a big disconnect in the mainstream approach. And not is it mainstream? Or, you know, like, the older neuro rehabs, I don't want to name anyone by name or pick on people, but a lot of the neuro rehabs in the US where you see this, people re-mortgaging their houses and selling everything to basically work towards a goal to better replicate the able bodied.
TSF: Oh, yeah. Well, so you're you're you're dichotomizing the mortgaging your house to pay for expensive therapy, whereas we're over here saying, hey, hey, just just get on the floor and roll around.
CG-C: Yeah, well, no, it's like I, for me, it was like, I always looked at what for what is the significant barrier I mean, I think it's a process a lot of sci fi, like spinal cord injury athletes go through where you think maybe people just don't know. It's all about, you know, like, maybe I need to go into different hospitals and do talks and, and this type of thing, and then you realize, Oh, it's Maybe not necessarily just the information, but the approach overall. So what is the barrier that's existing to stop people from listening or from accessing this information? Especially when, for example, it's chapter one is free. It's online. Anyone with a smartphone can access that. Instead of I don't know how much it costs to do a few hours of a session at any neuro rehab mainst-, or like more mainstream neuro rehab gym in the US. Yeah, I've always found that interesting.
SB: Yeah, Calum, I think you're asking the million dollar question. I mean, and but also, there's some grace in that too, because we were in that boat for the first three years, too. And so being patient and letting people come to it on their own terms is really important. Because you can't force this kind of thing on someone, they have to really come to it on their own terms. And I've seen many, many athletes that I've worked with, I'll be working, you know, I'll be working with them and simultaneously seeing or going to a neuro rehab gym and we're, you know, and there's so much potential in those rehab gyms, they've got all the tools, they've got young, youthful energy in their trainers, so much potential and so much good that comes out of them. But it's always been this process and the turnover, and what the person values as they, as the time passes, I think, as Theo said, people are really excited to get moving, big dynamic movements that maybe the hospital didn't allow them to do. And with these neuro facilities, they just get to do them. They get to get up in a walker and walk and it feels really good on their psyche and their body, probably. And so, you know, the last thing they want to do is be put on the floor and taught how to roll around or taught how to breathe. Which which, by the way, isn't necessarily all. That's not what I do. But that's Yeah, maybe people think I do. Yeah. So it's just not it's not sexy. And it's not incredibly exciting. From the first glance, it's not exciting until you experience it until you experience the change and realize, wow, there's really something to this. But it's so it's so against the grain to address holistically, at least in the US, people are so external here, that when you start to introduce more of a full body integrated Mind Body holistic approach, it's, it's labeled as woowoo or too out there, and aren't quite ready for that.
TSF: I also, I also think that one of the things, at least here in the US and again, Calum, I'd love to hear your thoughts on this. But we are, I think, I think most of the Western world, frankly, put in the same situation would be fighting this kind of industrial revolution vestige of regimentation and standardization. And the fact that, you know, especially post World War Two in this country, I mean, that was what we applied to every part of our society, to our schooling to our assembly lines to the way that we dealt with elder, we did elder care, you know, it's all about efficiency and, and regimentation and standardization, standardized testing is like a huge, like a terrific example of the the detrimental effects of requiring, you know, complete obedience to the, to the standard. And that that is certainly the case in, in certain parts of healthcare and, you know, to its credit, like standardization and the regimentation have wonderful benefits for, you know, making sure that we meet certain levels of safety in, you know, you know, the fact that, you know, commercial flying is like 1000 times safer today than it was even 25 years ago. Like, that's, that's fantastic, that permits the kind of society building in ways that would never be possible. We're not for that. But at the same time, this kind of mechanistic approach to rehabilitating the body is like, does have its downsides. And so, you know, we are, we're a little bit allergic here to the touchy feely things, and we're a little bit resistant to being being open to discovering, you know, kind of, as Steph said, more of the woowoo side of how our feelings are influencing our movements and such so, yeah, I think I think that's, I think that's one of the battles we're fighting.
SB: And it really asks that the person puts in Work and yeah, reflect, like, you got to look at yourself, man. And y
CG-C: Which is scary.
SB: It's scary. Yeah, yeah. And so I think at least American culture is, you know, you're not supposed to really look at or even address your vulnerabilities, you're just supposed to kind of like, push them to the side, and then you know, no pain, no gain. Um, but obviously, that's kind of not as we've been saying over and over, that's not listening to the body and addressing what's the body in front of you. And so yeah, I think you're bringing up a huge, huge, huge fundamental component of the culture itself. It'll be interesting to see how things change as people start to, you know, get more information. Again, why one of the reasons why we wrote the book was to just help people learn more, and hopefully open people's eyes to this to new ideas. And so hopefully, as people learn more, and they realize, man, you know, spending 12 hours a week at this one facility may not be the answer. Let's like, broaden a little bit out and see what these other people are doing. Maybe try yoga, try Pilates, try feldenkrais, I'm noticing a trend more and more. So I think we're headed in the right direction. Whereas five, just five years ago, there was only one place to go. And, and that was these neuro facilities. So I think we're in the right direction. But it's gonna take time.
CG-C: Do you think part of the barrier is something we spoke briefly about before this kind of disconnect between identifying with your injury or disability or divergence, whatever you want to call it? In the sense of like, I just want to turn up for an hour or two hours, you take me through what I need to do, then I go home, and I just switch off from that, because I'm not really ready to take that on.
SB: Absolutely. I mean, that's so evident, when you look at like, literally, I have worked with SCI athletes that will pay 12 hours a week to work in a gym, because they believe that that is the only place that they're going to recover. And so they need to spend all of their time there. Whereas I'm like, dang, I don't know where you're getting that cash flow. But yeah, like that is not sustainable, first of all, and that's not available to everyone. And so then that's where we started to flip our mentality and say, look, we need to be pushing more empowerment and ownership on the individual. Because no one can afford that. Yeah, even going once a week or twice a week is is hard enough. I mean, just in terms for context. the going rate for a session at a neuro facility is anywhere between 100 and $120 an hour US so what does that like? 150 Australian or 175? Australian?
CD-C: Yeah, yeah, exactly.
SB: Per hour, per hour. So I'm really finding ways to take the rehab home. What's that?
TSF: Even if you don't like the whoo part. Just do it because it's a cheaper workout.
SB: And also trainers, the overhead is way cheaper. Yeah, my, my years, my, my growth has happened so exponentially faster after my transition to kind of the new space that we were in, when literally my subject was like, I had like five subjects that I was studying. And I was studying them so deep, and learning from them just as much as they were learning for me. You know, we were very much learning alongside one another. Because, I mean, I knew the neuro kind of protocol that I was working before, that was kind of standard and old news. But all the new stuff I was really discovering, like in the moment with my athletes, so super transformative, really, really amazing time. I don't I mean, I learned more in that then. I learned more in those maybe two years than I did and like all of my university schooling and all of my other schooling so um, yeah, yeah, really taking time to learn from your clients.
TSF: One one more thing which occurs to me, and this is backing up a little bit, but with regard to the question, you know, what, uh, what obstacles does the spinal cord injury rehab community face toward? Shifting focuses or being engaged with more more approaches. Is it is the and Steph I think, I think you touched on this maybe is the very basic aspect that as you said, like it takes work, shifting to thinking about recovery as the process as opposed to the end result. And therefore, like the corollary to that, like the the natural reaction to that is, you're not going to be able to satisfy your goals. If you're only requiring, if your only approach to rehab is requiring help from trainers, it has to be something that you come to live through every part of your day, and you bring the awareness you build in your recovery session, into the way that you, you know, transfer into the shower, or the way that you, you know, you know, sit in your car when you drive. And it might be exhausting for a while. And frankly, hopefully, it is exhausting. Because you're thinking so much about all these different things, and you're seeing, you know, new reactions in your body in certain ways. Or actually, you're seeing the reactions that were always in your body, but you're seeing them a new because you have new awareness. But um, my experience has been at least after a certain point, these things sort of just get ingrained. And they begin to just be part of kind of the awareness that you have of your body everywhere, everywhere you go.
SB: Yeah, we call that kind of like the embodiment of the work. Yeah. When people ask me, oh, how often should I be doing a Pilates routine? I say, all the time. Like, it should just be in your body.
CG-C: It took me a long time to realize that aspect in terms of like, what's it's not just about what's the most you can do, but what's the most you can do in a way that real to real life? Yeah, yeah. And like, I was always trying to hit the point of which I couldn't do any more. Because people kept telling me don't do too much. And I'd be like, I want to know what that looks like. So I'd always be like, I'll do more, I'll do more, I'll do more. And then I, when I started to switch my understanding, I realized that actually wasn't helpful. And started to just do more in a or do less, in a more mindful way that was of more value.
SB: Yeah. And actually, I think to that, that's you bring up a really important point on kind of the we touched about how SCI bodies are, you know, we should be training SCI athletes, like a human, but not is an aspect I think that is actually very unique to SCI athletes is that more is not better and harder is not better, because then you're training the nervous system, you're not just training the muscles in the joints, you're training, the nervous system and the nervous system much more easily gets overloaded than those other systems. And so as you were saying, the more you do isn't it can be almost detrimental or backfire a little bit because the nervous system just gets pissed off and then shuts down. Right. So you just doing doing the things that are mindful, doing less things in a more mindful way and more often. Yeah. So yeah. And that's, I think, a true testament to the way, the way that we work is that it's not just kind of this in the moment feel good. And then maybe you feel good for the rest of the day. It's like, no, this work is like this last creating lasting change. And lasting impact.
CG-C: Yeah, exactly. It's a solution that's has some longevity, as opposed to like, boosting someone's self worth for a short amount of time and then dissipating pretty quickly. When they realize that actually, it's really hard to do, like, open the door, or get in the car or have a shower.
TSF: Right. And another way to think about that, too, is that the goal of recovery, in our minds should not just be to increase your maximum level of ability, but to increase your mean, or median level of ability. So yes, like, the average amount of ability that you have, is also increasing. And so like, even on, you know, some like your bad days, you know, it's not it's, it's not like you're sinking back down to a level of complete inability, but you're still able to tap into those movements. And so, you know, that and that probably more than anything, the, the, the amount of kind of strength and ability that you can count on any time is what I think probably makes the most difference for an athlete in feeling like they have freedom in their life again. Your your body can always change, your ability can always change, and you should not let your lack of awareness now for what kinds of modalities may help you, or what kinds of opportunities lie in your future. You should not let your lack of awareness of those now dictate what you can and can't do. You know, this is this is something that that you'll you'll understand well from the perspective of someone who's who, at some point, you know, as I know, it was the case for me. You know, I was pretty pessimistic about what kinds of things I could accomplish in my life. And that was based on just a limited understanding of the potential that I had and the ability to, to change. So I think keeping an open mind about what's possible is one of the most important things for an individual.
CG-C: From the ground up as a tax, but not only as a text, it's a text where it presents an idea that you're practicing, you're practicing or practiced as a trainer and athlete, as a process as a reflection of a real life experience. It's not an there's lots of great ideas in there and references and things. But this is something that was learned to me what seems through practice? And yeah, I think, yeah.
SB: I like that you brought that up. And I was thinking the other day, um, you know, I got asked so many times, because this, this book took almost three years to publish. And people kind of kept saying, 'well, why, you know, Why is it taking so long? Why don't you just get it out there? It needs to get out there.'
TSF: 'Are you done yet?'
SB: 'Why is it taking so long', and one of one of the reasons why it took quite a long time, was because we wanted to make sure that both sides had a voice in the book. Which takes a lot of finesse, right, to have the technical aspects that would be valuable for movement, practice your brand, also, then the information that's easily understood or more easily understood by someone that has no movement, or education. So that's one of the aspects. But then the second reason was, and Theo can attest to this, is that we would write something and say, 'okay, is that really what we think of it?' And then I would go in the studio, and I try it out for, you know, across several sessions, maybe a couple weeks, couple months. And I'd come back and I'd say, 'you know, it's actually a little bit different than that than how we wrote it down'. I mean, this was, you know, all of this stuff, all of the content in the book, like, as you said, is from our experiences backed up by other systems that relate to it, but it's very much an experiential, a representation of our experiences. And so there was a lot of back and forth between, 'okay, what are we writing? Is that really true? And how we see it in a clinical sense?' Let's try it out, back and forth. Okay, let's edit the text. That's not exactly what we meant to say, it looks more like this. And then even because it took so you know, over the course of the three years, I'm still learning new content, information. Theo's still reading things and getting involved with more physics and mechanics as he's in school. So the content evolved, both from our experiences, but then also from what we were learning. And we said, well, we want to bring a little bit more depth to that we need to develop that more. So. Yeah, definitely a process building the book out. As you said, I'm glad you picked up on that, because it was definitely a journey for us. Over the years.
TSF: Yeah, it was kind of a micro macro kind of thing. Where as we're writing about this process approach, we're going through the, you know, our own process ourselves of kind of discovering what the process is that we're writing about. Yeah. And I think like Steph and I probably both have aspects in there.
CG-C: Something that really made it different was like, this is this is real, it's relatable. It's been practiced, and it's just encouraging other people to take on that same level of pure curiosity and maybe expand their horizons or whatnot. Whatever path it is, they practice, like the quote where you say, 'We want educated practitioners more readily accessible through local health clubs and gyms, yoga, Pilates studios, and bodywork and massage clinic.' Centering this network of neuro focused trainers will take time, but we must start somewhere. And I was like, 'This is the solution to the barrier that I've experienced'. And it's being practiced now by the people who have written this and when they were writing it, so maybe I should listen. You know, maybe there's something there that you know I'm well there definitely is something that I'm not gonna get to.
TSF: That's great. Yeah, we're we're so happy resonated with you. And and grateful that You're, you're joining in this, this quest to share it more broadly.
SB: Can we can we just give a quick shout out to Australia? Yeah. their enthusiasm for this resource. We've had we've had so many orders to Australia that it's been really amazing to watch this. How much more because maybe not more excited but so many books, unexpected amount of books going to Australia. Yeah, versus the US and especially specifically the US but then all throughout the world. There's a substantial number going to Australia. So nice work guys on trying to learn something new and expand.
CG-C: Cool. Okay. Thank you very, very much.
TSF: Thanks, Cal. This was wonderful and we're so grateful for your, for your keen eye in reading and your your sensitivity to, to what we talked about. It's very cool to hear your perspective on it.