Advocacy Beyond Limits with Jason & Quinn

Jandel Allen-Davis, M.D. chats with Jason Stoffer and Quinn Brett, both Craig Hospital graduates, as they take us in deep into their work with Unite 2 Fight Paralysis where they're shifting the conversation around recovery and research.

The two met during their rehabilitation at Craig in 2017. Their shared frustration with the fragmented approach to spinal cord injury research led them to leadership roles at Unite 2 Fight Paralysis, where they're forging a new path forward.

Discover how these two advocates are building a movement that harnesses both informed hope and knowledge to create meaningful change in the spinal cord injury landscape. Their story reminds us that sometimes the most powerful advocacy comes from those who refuse to accept limitations.

For more information, transcriptions and behind-the-scene photos, visit https://craighospital.org/unstoppable

Craig Hospital is a nationally recognized neurorehabilitation hospital and research center specialized in the care of individuals who have sustained a spinal cord injury (SCI) and/or a brain injury (BI). Located in Denver, Colorado, Craig Hospital is an independent, not-for-profit, 93-bed national center of excellence that has treated thousands of people with SCI and BI since 1956. Learn more: https://craighospital.org

Transcript

Introduction to Unstoppable at Craig

Jandel Allen-Davis, M.D. 0:04

Welcome to Unstoppable at Craig, where we pull back the curtain on what makes healthy workplace cultures click and what happens when people are empowered to expand the boundaries of what is possible.

Jandel Allen-Davis, M.D. 0:15

We'll explore the perspectives of employees and leaders who have carte blanche to speak their truths, tell their stories and unlock uncommon ways of approaching challenges. I'm Dr Jandell Allen-Davis, ceo and President of Craig Hospital, a world-renowned rehabilitation hospital that exclusively specializes in the neurorehabilitation and research of patients with spinal cord and brain injury. Join me as we learn from people who love what they do and what happens when fear doesn't stifle innovation, and what happens when fear doesn't stifle innovation. So this particular Unstoppable at Craig episode is I've been excited to do and have been looking forward to for a couple reasons. One it's our first one where we're not all in the same room, so that's a little different than typical. But the other is this is the first time we're having an opportunity to talk to a couple of amazing human beings who are also Craig grads and have some phenomenal stories to tell and work that they're doing that is really worth the world knowing way more about than we already do.

Jandel Allen-Davis, M.D. 1:17

So, this should be, I hope, a great conversation and discussion and stimulate some great conversation and interest out in the world beyond certainly the three of us right now, so we'll see where things go. So I'm joined today by Jason Stauffer, who is the CURE Advocacy Network Manager for Unite to Fight Paralysis, and Quinn Brett, who is the same organization's Development Director, and I had a chance to meet them about a year and a half ago more formally when they were back here at Craig and spend some time with them and, as I said, in addition to just people who are committed in ways that you might not necessarily always see, they're just also really super cool people. So I'm excited to have the chance to talk with them.

Jason Stoffer 2:02

And so welcome, hello Jandell. This is Jason. Yeah, thanks so much. I'm excited to have the chance to talk with them, and so welcome, hello Jandell. This is Jason. Yeah, thanks so much. I'm super honored to be those first Craig alum folks on the podcast, so really looking forward to the conversation. Thanks for having us.

Jandel Allen-Davis, M.D. 2:19

Oh, you bet. Thanks so much, Quinn, and I would go so far as to say and may you not be the last. Let's sort of keep this thing going.

Quinn Brett 2:28

I think maybe to start can you each take some time and just tell us a little bit about yourselves, minnesota and moved to Estes Park, colorado in my early twenties, discovered rock climbing and fell in love with rock climbing, and Estes Park, colorado is a fantastic place to cut your teeth and become upwards of a world-class athlete, as there's many that live there Tommy Caldwell and Kelly Cordes and Paige Clausen all professional rock climbers, who I was surrounded by and inspired me to push myself a little bit further. And in 2017, I was rock climbing in Yosemite National Park on El Capitan the big 3,000 foot cliff there, something that I'd climbed many a times and have speed records on and I fell and I broke my back and I am now a T12 complete injury, and that brought me to Craig Hospital, and around that same time is when my friend Jason was injured, and so we met, in fact, at Craig Hospital in our initial stay in 2017. Thanks, quinn.

Jandel Allen-Davis, M.D. 3:37

How about you, Jason?

Meet Jason and Quinn

Jason Stoffer 3:40

I have a spinal cord injury. I'm an L1 complete injury. That's kind of the, obviously, what brought me to Craig and into this whole world. But prior to that I lived a pretty adventurous and active life and have done some cool stuff in the world of like emergency medical or emergency services, some wildland firefighting for Glacier National Park and volunteered with an organization called the Alaska Mountain Rescue Group, and while we lived in Alaska for 10 years the we is actually my wife and I, Lori and myself, and we have three kids and yeah, so what I was doing right prior to my accident I was a federal law enforcement officer working up here on the northern border.

Jason Stoffer 4:26

So I live in Northwest Montana and I was called into a work meeting that took place during a winter storm, which was pretty nasty and so outside of my duty hours, called in, hit a patch of black ice on the road, had really the only accident I've had in my whole driving career and it was a doozy Went off the road, hit a ditch, flipped three times my service weapon, hit a seatbelt unlatch in the truck that I was driving, which made my seatbelt splay open and I went through a windshield, flew over 100 feet, Wound up inadvertently in this fun club of spinal cord injury. So, yes, that brought me to Craig Hospital. Yeah, that's kind of where this whole thing and the work that we do and this relationship and friendship with Quinn and all those things began.

Jandel Allen-Davis, M.D. 5:20

I think about the two of you through the stories you just told, as folks who the injuries are, and they haven't stopped you in so many ways, I'd imagine, even in terms of the love and of things you want to do in the outdoors, but also certainly the work that you do with Unite to Fight Paralysis, and I'd love it if you all would talk about what is Unite to Fight Paralysis for our listeners.

Quinn Brett 5:41

Yeah, unite to Fight Paralysis is an organization, small, nonprofit that maybe Jason can help expand my thoughts here but we educate and advocate in the spinal cord injury research space with the hopes of expediting the research process. This injury is so specific and so many nuances, person to person and individuality, that in order to better understand in the research landscape, maybe you should meet and talk and work alongside people with the injury who can help describe what's actually happening to their bodies, with their bladders, their bowels, their sexual function, their sensation, their blood pressure, rather than just making assumptions or guessing out of thin air. So our work tries to put people with the injury in these spaces, from advocating for more research to putting you in the lab to consult on the research. Our baseline is educating our own community and others and then putting us in the spaces.

Jason Stoffer 6:41

We're becoming more of a platform, I believe, like a platform for people's voice, a platform for the dissatisfied. Early on in this injury, there are pressures that compel us to quote unquote move on, accept what's happened to you and move on and try to enjoy the rest of your life however you're able. And for some folks that works out. But for some folks, you know, that's not a satisfying answer and they they sort of rail against it and they're looking for ways to get involved or change their world for the better.

Jason Stoffer 7:16

And so there's a couple characteristics I feel like that describe a unite to fightysis, which is you, the number two FP, you two FP, and those two words that really pop into my mind are one audacity. I mean this belief that we can do something important right, with enough folks jumping on board and enough energy behind it. Number two we stand outside of this expectation of the disabled community in general, which has existed for a long time, which is to be meek and mild and thankful. And you know, don't raise a fuss, right, and we don't generally do that. And so this kind of contrarian, this kind of contrarian nature, it helps us and helps propel us, but I think it sometimes also maybe gets us into some trouble sometimes.

Jandel Allen-Davis, M.D. 8:04

You know, as I first of all, I love this. I heard impatience in that, as opposed to contrarian and inappropriately impatient. You know, when we think about you know whether we use phrases like marginalized or disaffected or forgotten or invisible populations or communities. We ought to have a heck of a lot more impatience, I think, than we have. Before we move on, I want to stay on this for a minute. What all falls under the sort of umbrella of cure as you all think about it, and how has that evolved in your thinking and even in terms of how's it making you more contrarian, I'd say, or impatient?

Quinn Brett 8:46

I'd say, or impatient A cure. If one were to think of it as everything and anything returned from the person I was before my injury, before October 11th 2017, that would be a cure. But Unite to Fight Paralysis and Jason and I, in particular, really try to strongly encourage that. Really try to strongly encourage that there are lots of little cures along the way, that it is a spectrum that to improve our bladder function, to improve our bowel function, to.

Quinn Brett 9:13

For me, I have an exceptional amount of nerve pain. To take that away, one little cure for my nerve pain would increase my quality of life exponentially and with our higher level friends, the ability to breathe, the ability to hand grasp while you're not walking and running up mountains like you used to, if you can return hand function, what you can return to work, to play, to independence, those things. So Unite to Fight Paralysis. We strive to remind our own community and the greater community that, while there is that pie in the sky cure, way the heck out there and we are working towards that. Let's remind the research landscape and advocate for ourselves that we need to work on the little steps to get to the big pie in the sky.

Jandel Allen-Davis, M.D. 10:02

This idea that you're going to go back to who you were physically, behaviorally, spiritually you name. It is a misperception. It's a universal misperception. So I love that. That improvement does not mean that that's less than cure.

Jason Stoffer 10:18

So cure we mentioned it's a controversial word, right, and really the perspective of the person who's saying the word comes into mind. I mean, you know we have like an able-bodied population that thinks of this word cure and we have folks living with this injury that think of this word cure and what that means. And you know you can hash it out even further to say, oh, are you talking about capital C cure or like what Quinn mentioned, like these small C cures are plural right, functional recovery along this path. But I think one of the reasons why and this is something that Quinn and I have really sought to change again back to this audacity, if you can change the way something is seen in a whole community this is one of the things that we would want to do, because for both of us, we never understood why there was a historical competition between care and cure. It was called the care-cure divide, right, that people resisted this word cure, especially when you're looking at a population of folks who are physically disabled or mobility issues or whatever and that that word cure was synonymous with fix, right, and if somebody was to be fixed, that would imply that they are broken and nobody really wants to consider themselves broken, right. So why cure me, why try to fix me, right?

Jason Stoffer 11:42

But the other side, the nuance to that is I understand that perspective and I and I respect it there's some amount of like this word shame that comes with it, right, like with the cure, you know the cure thing, and like fighting against it. It came, it came from this deep, deep history of disability rights, right, and folks that were marginalized and pushed to the side and essentially, were made to feel shameful about their disabilities, right. And what's kind of really cool is, you know, in the sixties and seventies, during some of the civil rights era, you know, there were some people that came to the scene and totally flipped the script on that to where, like, disability pride became a thing. I mean for myself. I don't really think about my disability in terms of something I'm shameful of or that I'm proud of. It's very pragmatic for me that it's. I was a 40 year old man that lost a bunch of physical functions and and so, yeah, this kind of marching toward this word, the capital C cure gets you recovery of these functions along the way.

Jandel Allen-Davis, M.D. 12:52

You know you take me to a really great transition with that or segue and it has to do with and I love this care-cure divide. I'd love just if each of you would spend a little time talking about those early days at Craig Hospital. What was it like in those early days and what were some of the struggles? As you all were even, I mean, I'm pretty certain when you first got here you weren't thinking care cure divide, that's new language. But let's talk a little bit about those early experiences here, if you would.

Quinn Brett 13:19

Yeah, certainly wasn't thinking care, cure divide For me. I'm similar to Jason in that I also have an emergency medicine background. I was a climbing ranger in Rocky Mountain National Park. So the very people that rescued me off of the cliff in El Capitan in Yosemite, that's the job I was doing in Rocky Mountain National Park. So a curious mind, especially medically minded, and, I guess, an achiever of let's do better, let's try, let's try linking mountains that have never been climbed before. So that's mindset of doing things that have never been achieved before, and has stuck with me.

Quinn Brett 13:56

And so in the hospital, when first learning of my injury and first learning of the state, like just seeing my wheelchair for instance, I joked a long time that, wow, like the hardware, the wheelchair, the things like these all seem archaic to me in this time and age that we are in. Nothing has changed. Our processes or our inventions haven't been improved. It's kind of like we've made the wheel and we put some stuff around it. Here's your wheelchair. And to me I was so disappointed and this is really as far as we've come with these physical items.

Quinn Brett 14:32

But also in the state of research my mind went to, of course, because my healing, I was desperate to find stories of anyone who had twitched a toe and was able to walk again. And you're desperate to find those narratives and maybe find your path heading that way. And then, of course, you dive into the research landscape or you hear stories oh, like this person in Bavaria got stem cells and they're walking again. And I had friends there was a GoFundMe and there was friends that were encouraging me to go abroad and go get stem cells. Why not? But my rational brain jumped into play there and was like I mean, if these really worked, wouldn't we all be walking? And then understanding my injury even more, of meeting other people at Craig Hospital that are T12s and my calves twitch all the time. Her calves don't twitch all the time.

Unite to Fight Paralysis Explained

Quinn Brett 15:26

Huh, again my medical minded brain of being like well, okay, well, when do you get the stem cells? Does that have an effect? What is your exact injury? Does that have an effect? And so all of these nuanced layers that weren't necessarily being educated to me and I had to seek out because of my curious mind I found missing. I just wanted more information and I wanted more information about my injury and about the research. And should I go spend $100,000 in a foreign country, or should I not? And if I don't, am I going to regret it? All of these things, I guess I just found myself wanting concise, objective information.

Jandel Allen-Davis, M.D. 16:03

Did you see that zeal, that desire to look for stories or narratives that push beyond? I'm going to call it the symbolism of the wheelchair, because it's interesting how you put that. Did you see that in conflict with what you were having to learn and do around skills and things at Craig? And how does it get integrated? Like there are?

Quinn Brett 16:24

so many people we are so fortunate to go to have gone to Craig Hospital and not a nursing home and we are so fortunate to have learned ADLs and transfer boards and how to drive a car. We are so fortunate to have those things. But those are ticking the boxes and I just wanted a few more boxes to be ticked in my educational rounded experience at Craig Hospital.

Jandel Allen-Davis, M.D. 16:46

And for those who don't know ADLs, it's the activities of daily living. How about?

Jason Stoffer 16:51

you.

Jandel Allen-Davis, M.D. 16:52

Jason.

Jason Stoffer 16:53

What I really always come down to when I think about Craig is always like a positive. Always come down to when I think about Craig is always like a positive, like warm place in my heart, I think because it was this place that was teaching me all of these things that I needed to take care of myself and to be independent. And as I look back and people that I've met from other rehab hospitals and various things, I mean I'm like how did you not learn that? In other words, I saw limitations in so many ways and it made me so appreciate what I was privy to at Craig Hospital.

Jason Stoffer 17:34

How can we be more cognizant of the way that we have an effect on these new patients and if they ask questions that are that are seeming to be wrapped up in in hope like, well, what is science doing? What's what's going on with bladder? What's going on with bowel, what's going on with pain, what's going on with pressure sores and these types of things that you know to have like a resource? I wish I would have had a resource to answer those questions that Craig Hospital or any other model system is essentially not really responsible for answering. I mean the goal of a model system, rehab facility or center is to get people stabilized and get them integrated back into their community and get them able to be able to live their days with independence, so that they can go on and do these things that they're interested in, like spinal cord injury advocacy or like trying to cross the Grand Canyon on a trike.

Jandel Allen-Davis, M.D. 18:34

Let's talk first about this concept that you have lifted up, another spectrum of, or it is a spectrum around, the different ways that hope shows up or is defined, the way that you all think about it.

Jason Stoffer 18:46

Yeah, I mean looking back on. So we're seven years out from this whole experience. I've had a lot of time to think about it and I feel like the I've been able to summarize in my own head my early experience with hope and I just want to qualify that when I'm saying hope, I'm talking about hope of physical recovery. There's different types of hope for different things, right, like hope that you're going to have connection in society and various things, but I'm talking about specifically hope for physical recovery things. But I'm talking about specifically hope for physical recovery. There's kind of boiled down to me to like three versions of that, right, which is you have a no hope version, you have a kind of a false hope version and then you have an informed hope version and those kind of lay onto the characters or the players that are present at the time right, I mean when I was going through inpatient my hospital and also somewhat at Craig, you have these clinicians that their main job in life is to get you moving forward.

Jason Stoffer 20:00

Clinicians, this chatter about physical recovery or cure I'm going to walk again or I'm going to beat the odds can sometimes get in the way of the job that they're trying to do, which is just to get you stabilized, moving forward, the things I've said before, right, and so it's actually kind of like in their favor for you to not be thinking about you beating the odds or the research that's happening or, you know, going back to look anything like the life that you had before spinal cord injury, because they're they're trying to get you to accomplish something. I have a really great example of that and I, like I said, when I met some folks at some of these other rehab hospitals and there was a gal perfectly, she was a para um, she had perfect use of her arms, upper body, but she could not transfer into a car and I asked her what's going on with that? Did you, when you were in inpatient rehab, wherever you were, did they not teach you how to do these transfers? And she said, oh yeah, they taught me. I knew that I wasn't going to need it because I was going to get healed.

Jason Stoffer 20:57

You know, that's one version of this hope that can kind of like get in the way. It got in the way for her to the point where she lost the ability to move through her day with any kind of independence. So you can see why for a clinician. They don't almost don't want you thinking about it, so they don't really encourage you to be talking about that kind of hope, right? So then what happens is you move into what this young lady had, which is like a false hope, which is you know what, they don't know what they're talking about.

Jason Stoffer 21:24

These clinicians, these neurosurgeons, these PMNR doctors I'm going to beat the odds and I'm going to Google my way to it, and so the answer to that at least what I found in Unite to Fight Paralysis and, honestly, what Quinn and I are helping to even now shape, unite to Fight Paralysis and what we do and what we think is to offer this third option, which is informed hope, which is to say, here are some objective resources of people that are actually doing something about this injury breathing, autonomic dysreflexia, and this list that goes on and on and on and on of these conditions that there is somebody actually on the case.

Quinn Brett 22:02

I think a lot of our community, you know, we've been told in five years, in five years, in five years, stem cells it'll be, it'll happen for you. And our community is just like yeah, yeah, yeah, call me when it's ready for me, and then they don't participate in any of this advocacy or and speaking up for the small things that really would improve our quality of life, be it on the care side or the cure side. We're just kind of complacent.

Jandel Allen-Davis, M.D. 22:27

There is cure on one side and then there is these accommodative skills and there's a way that the both do play together and can play together.

Jandel Allen-Davis, M.D. 22:34

And that's one of the things I'm proud about around how our psychologists, as well as PM&Rs and the others, sort of try to figure out how we meet people where they are.

Jandel Allen-Davis, M.D. 22:47

And there's always way more that we can do that you all are bringing up, and I like this care-cure divide. And how do we narrow the divide by integrating these things in a way that I would say respect and meet a given person where they are. But we do have a really robust peer mentoring program here at Craig, and I'd wonder, just sort of thread that I chose to pull together is the idea of how community groups and organizations how do they step in in a way in terms of some of the things that you all so fervently not only believe but know in your heart could push this agenda forward. And so, quinn, I'd ask you that how can we use some of these resources in a different way, so that it isn't all on a Craig Hospital, both while people are in patients but even beyond, because I know that's in fact where you all spend the bulk of your time?

Quinn Brett 23:32

So Jason and I hiked the Grand Canyon in our hand cycles and we're the first to do so from the South Rim to the North Rim and in part I wanted to make a film about that kind of a visual representation of the divide Sure, and that could be from care to cure, but also a divide within our own community.

Quinn Brett 23:50

So what happens is, I feel, is when you're not exposed to this stuff or you're in the no hope space, it's hard to carry this through in a mentorship program or anywhere, because it's just untalked about. And particularly with our injury level, jason and I are fortunate enough to be lower level paraplegics. Our quality of life, our time of day, things like bathroom programs, all of that those things don't occupy our life at nearly as much as higher level injuries. So we have the bandwidth to do this fighting, this advocacy work, and so Jason and I have been trying to remind our own community, in particular the ones that have more bandwidth to do this advocacy Gosh that could be something that applies to all of us in terms of are we really using our capacities and our skills and our privilege?

Jandel Allen-Davis, M.D. 24:40

Because it's an interesting variation on privilege you're talking about.

Jason Stoffer 24:44

When I think about all these secondary conditions that spinal cord injury brings, and the reason why that we do this work is, you know, I can give you this long list of all the things that we're dealing with. Okay, and you guys are very well aware of it as clinicians and you see it every day, but for me, all of these problems have faces and names attached to them. I'm just thinking lately and I kind of get a little bit emotional thinking about it. I'm thinking about my buddy. He lives okay, this is what you don't see of anybody rolling at their power wheel to or from a different appointment or something. This is somebody and they're many years out from the injury. They're alone in their apartment at this moment and they're dealing with pneumonia and they can't cough, they can't clear their lungs.

Jason Stoffer 25:33

I think about and I've asked him what do you do, man?

Jason Stoffer 25:37

He says well, the only thing I can do is to tilt my chair back as far as I can possibly so that the mucus that's in my lungs drains through gravity out of my mouth, where I can try to muster a movement that resembles a cough but is not even close to it, and that's running across my face and down on the floor Like this is my friend and this is what he's dealing with, right, this terror, small terror of having to contract contracting a cold Again.

Redefining "Cure" in SCI Recovery

Jason Stoffer 26:10

The reason I bring all this up is there is this portion of our community who is able to adapt and they're able to get a grant for a trike, you know, they're able to be exposed to the education that Craig brings. But there is a huge portion who is not. And these physical issues, these secondary conditions, they are huge and they're insurmountable. I think that is a huge reason why we do this work and why we try to show up and why we try to talk to legislators and why we try to get people involved in labs and on and on and on, and why education is so important. But I don't know why. I just felt like I kind of needed to bring that up because it's a very real picture of what spinal cord injury is.

Jandel Allen-Davis, M.D. 26:51

You know there was a couple of things that came to mind and thank you for sharing those stories.

Jandel Allen-Davis, M.D. 26:56

As I've said to patients, not every day is a great day at Craig.

Jandel Allen-Davis, M.D. 26:58

I don't care how like you said, doing the Grand Canyon from, you know, one rim to the other but not every day is a great day, and I think that's some of the invisible parts that are missing, and it brings up a really cool, I think, transition that I really would love you all to talk about, because, at the heart of it, what Unstoppable at Craig seeks to explore through story and through perspectives and reflections, is what is the stuff of leadership. You know what's it take to build great cultures, what's it take to do the kind of work that we can get beyond 1% Gosh, even 5% more folks involved would be an amazing thing. And you know I've been in this advocacy space for a number of years, not just in disability rights but just in health care advocacy for years, and you know it takes a different kind of leadership, I think. And first of all, I ask you all if you agree, and if that's the case, what does advocacy leadership not mean? But what do you think it requires?

Jason Stoffer 27:59

that's different from you know what I do every day when I come to Craig and I hope serve as a halfway decent leader, that fire that you have or dissatisfaction whether that's an injustice or you know whatever it is that you are extremely dissatisfied and even angry about and harnessing that as your fire, your battery, but then putting it on some wheels by imposing organization and action and actionable plans towards that.

Jason Stoffer 28:33

So using that fire, not getting rid of it like not hey, accept this and move on, but harness it right to make some sort of change in your world. And I think that's what we try to do at Unite to Fight Paralysis. I mean with the advocates that we have. They come to the table and they see it as a place where they can be dissatisfied and where they can go and tell their stories and where they can gain a voice. And it's really advocacy management at that point, when people are doing that, is easy you just let people talk, you just give them, you open the door to a senator's office and you let people tell their stories and you try to educate or whatever to be able to gain the confidence to tell your story, to gain your voice. So I think that's really a huge part of that.

Jandel Allen-Davis, M.D. 29:20

You know, when I think about not just advocacy but policy, and then politics and the whole morass, it can sometimes feel like not morass but molasses.

Quinn Brett 29:30

If I can, in terms of the pace of change, Just a few stories or moments where you went, yes, yes, I mean it's been awesome for me to now return to DC in a different lens and advocating for disability and something that I noticed, I guess, the first time that I went to DC before my injury. I definitely was nervous and it felt like a used car salesman, like you're just talking to people who don't give a crap and they don't really understand, and it's totally wild. But to return and go on the behalf of disability and spinal cord injury and accessibility and to realize that it one hits a lot more, strikes a lot more nerve with people, they have an easier attachment to it across the aisles, both democratic and republican sides. But also realizing that my relationships because of the relationships I had built previous to my injury, in returning the things that it has brought, that it's just another form of relationship building and while it did feel sleazy at first, I will say it's continued now that I have these relationships with people in DC and they have called me out of the blue saying, hey, we want to write a bill for paralyzed veterans and going to our national parks. What should we do?

Quinn Brett 30:47

Quinn Brett, you seem like a really lovely resource for that, and so just reminding that our stories, I think for me getting over the burden or the stigma of now in person with a disability, and I should just yes, as Jason mentioned always be grateful, always say thank you, never be a burden and never push the boundaries, shifting that narrative to know, my story matters and the only way that you're going to connect with people is through your story, and the only way that change is happening is by having more of us tell our stories and realizing that, oh, this is actually an issue. There's more than 1%, there's 5% of these people. Yeah, by including more of our voices to make the change.

Jandel Allen-Davis, M.D. 31:31

And I think, jason, you'd said that we need loud voices.

Quinn Brett 31:35

Educated voices, yeah, and educated voices.

Craig Hospital Experiences

Jandel Allen-Davis, M.D. 31:38

So talk about leadership and advocacy versus others, and that's beautiful, quinn, and yeah.

Jason Stoffer 31:44

We've got a good problem right now, which is that there's with more exposure, people are coming to us knowing that this is our lane, like this is the lane that we, that we swim in Right, and we try not to divert from it too much and they want to do something like, they want to get involved, they want to get active Right, and unfortunately there are some want to get involved. They want to get active and unfortunately there are some steps that are involved. If you come to an organization and you want to get involved, well, you don't want to just jump in there and start yelling around or whatever that you're going to do. You want to know what you're talking about. The model that we've used at Unite to Fight Paralysis is really the model of the AIDS advocacy of the 90s and into the 2000s.

Jason Stoffer 32:28

These folks were tired of seeing each other die and they were tired of not having answers, and so they got loud and they spoke up. But one of the biggest, probably the things that they had in their favor was they had this educational branch of that advocacy, of the organized advocacy, and they were reading peer-reviewed research. They knew what they were talking about when they showed up. They could not be shut up as saying or dismissed by saying, ah, that's fine and cute, but you don't know what you're talking about. They knew what they were talking about. They knew the numbers to cite, they knew the data that was out there. They knew, for instance, one thing we bring up a lot is that, okay, yes, you might have $140 million going towards spinal cord injury research from the big federal pockets or some of the larger private, but did you know that half of that money goes elsewhere, besides the work for which it was funded, in administrative costs? So when you show up and you tell a legislator about administrative costs, it is persuasive, and so one of the first steps is really to just educate, educate, educate, educate.

Jason Stoffer 33:39

And so, at Unite to Fight Paralysis, we have right now, I think, about 115 podcasts with some of the greatest and most influential researchers in the world, but also up and coming folks, folks with the injury, like lived experience researchers, like a whole variety of people, and we have these conversations about all these things, and so that's like a treasure trove of information to give you context about this injury and what's happening. That's like a treasure trove of information to give you context about this injury and what's happening, but also Kate Willett's book. We encourage people to download and read. It's free. You can get it from Amazon or you can do book on tape. That was for Quinn and I was a huge resource.

Jandel Allen-Davis, M.D. 34:16

Okay, so for the folks who are writing stuff down, kate Willett's book.

Quinn Brett 34:20

Don't call it a miracle.

Jandel Allen-Davis, M.D. 34:22

Don't call it a miracle. Okay, I'd like it just a dream dream. I mean, if there was enough time and talent and treasure to really fuel your, your vision for what UTFP and those on whose behalf you work could do, just what would you do? What would it be? What's that shining castle on the hill look like in your mind?

Jason Stoffer 34:53

I don't want my buddy to. I want my buddy to be able to cough You're going to make me cry, yeah, I want him to be able to clear his lungs and not live in terror that he's going to drown. And I want the newly injured dad to be able to help his kid learn how to ride a bike again. I want Quinn to be able to peak bag and be on top of a mountain again and I want all these things for our people and I don't want it to be too much of a burden to ask. And so I don't know how we do that. I have ideas.

Jason Stoffer 35:26

I do know that there's lacking right now any single point of organization that takes any of the random work that's happening in their silos, whether it be bio or whether it be neuromodulation, or addressing this idea of administrative costs or all of these obstacles that are on and on and on. There's nobody, there's no single point that's organizing any of that work, which means that much of that work and much of the dollars that are being thrown into the air by many granting agencies are just being wasted because there's no coordination of effort. Being wasted because there's no coordination of effort. If I could snap my fingers and tomorrow have an organization or a plan or a moonshot, or whatever you want to call it, that organized these things. I think I mean that's practical right, like if I could really snap my fingers and make it happen, spinal cord injury wouldn't exist, even though it is. You know, it's an interesting, it's an interesting thing to deal with. It's got some really incredible community, you know, but I see a lot of suffering too. So I think those would be my, my things.

Quinn Brett 36:32

Yeah, and for me I guess on like the lower level of just just un ite to fight paralysis pie in the sky, is just more just, more people knowing that we exist in the work that we do and more of our community and family and friends being inspired to join our community efforts.

Jandel Allen-Davis, M.D. 36:53

A super full circle moment in some ways, as I think about it. And, by the way, your comment, Jason, about having a single sort of way that work is coordinated. If you ask me, it's the single biggest problem in advocacy work, regardless of the topic, is everybody has their own nonprofits. No one does gap work to figure out where are we overlapping, what's not being covered? But is it? The sum is greater than the part? What's the phrase? The whole is greater than the sum of the parts, or whatever that phrase is? Is that we are wasting time, we're wasting money and we're wasting lives in so many other ways. So it's the second thing this hour where you've said I could say that about education and healthcare more broadly, and crime and climate, and you name it, and land and water and violence and a lot of other things.

Quinn Brett 37:41

Our executive director has a his pie in the sky is this translational SCI factory, essentially putting it all together in one space. The researchers, all of it Like let's, let's reinvent this whole system all of it Like let's let's reinvent this whole system.

Jandel Allen-Davis, M.D. 38:02

Are there intangible things that you think you received through working with the amazing teams here at Craig that in some way are part of your why of doing the work you do now? Are there things that were kind of that subcellular thing that drives you and enables you and motivates you and energizes you, or energized you to say this is the direction I'm going, because you had choices. You didn't have to get involved with UTFV. You didn't, and yet you did.

Quinn Brett 38:30

No, but I think something that I took away from Craig or something that melded with my personality and being at Craig was just thinking outside the box and ingenuity, and so being paired with OTs and PTs of same like this isn't working for you. Let's try this. Like that ability to be flexible and try new things at all times.

Jandel Allen-Davis, M.D. 38:54

It's like a never give up.

Quinn Brett 38:56

Yeah.

Jandel Allen-Davis, M.D. 38:57

Well, that's what it takes to climb that amazing peak for sure. How about you, Jason?

The Need for Educated Voices

Jason Stoffer 39:02

Oh well, like going to the malls to learn escalator skills. We had to rush and do it very quickly while nobody was looking, because the mall cops would come and tell you that you can't do that, you know, or that you're not supposed to do that. That's why we have elevators and yada, yada. And I remember that the physical therapists and OTs and whoever was with us on those field trips, we would rush and do it and like run Like we were doing something super naughty which was great. So now I don't giving that confidence of like hey, like Quinn says, a lot too is like take up space, man, take up space. It's been a rough seven years. So this idea of like like I don't want to use the elevator because I can't find it for one, it's adding 15 more minutes onto my transit through an airport. So I'm just going to go up the escalator and you learn to deal with people that say you can't do that.

Jason Stoffer 40:01

The other thing too is this anti-tipper thing that for me, for Craig Hospital I don't know if it's a Western or Mountain West personality of adventure, but getting rid of those anti-tippers as soon as possible was huge, and to see the limitations in other places that they weren't doing that or instilling that confidence. You know being dangerous, like allowing yourself to go and do dangerous things I mean it's all in like the best way, like these are the things from Craig that I think of that I appreciate the most is not like the uber safe kind of coddling or or cushioning of everything, but like get out there and be dangerous, like I don't know, go, get on a trike or something and get yourself in trouble. I think I got these from Craig, but the biggest thing, like I said before, is just the amount of like margin I get back in my day because I learned so much independence there.

Jandel Allen-Davis, M.D. 40:54

That's beautiful. And lest our liability insurance carriers are listening when he says, do something dangerous, I understand both metaphorically, but really it's one of the things we say is that the only way to really be able to live in the full meteor of your life and your existence post these injuries is that we've got to take some risks, and they're always calculated risks. They're safe risks. I will not be able to get on an escalator anymore without thinking about you. You guys, let's get it done before the cops come. I just love it and we're going to do it. We're going to do it because we see on the other side what that serves. So I just thank y you all for making time.

Jason Stoffer 41:37

And also I hope that we can be a resource to not only Craig but any model system. Who, if you don't have the answers to these folks that are asking what's happening in research and what are my hopes for recovery as far as science is concerned, if you don't have those answers, if you could point them to us? That's why we exist. It was born out of our own for at least Quinn and I is born out of our own personal experiences of what we wanted early on, not just from Craig, but just the whole experience. So if we can be a resource to anybody out there, come join us, come talk to us. I hope that we can return the favor to Craig, you know, by being a resource for you guys. So, yeah, we really super appreciate the time, jendell. It's been great. Yes, thank you.

Quinn Brett 42:24

Thank you so much. Yes, I can go, jason's way.

Jandel Allen-Davis, M.D. 42:27

You two are leadership, personified and exemplified in beautiful ways. Thank you so much.