June 16, 2025 • 42 mins
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 world-renowned rehabilitation hospital that exclusively specializes in neurorehabilitation and research for individuals with spinal cord injury (SCI) and brain injury (BI). Located in Englewood, Colorado, Craig Hospital is a 350,000-square-foot, 93-bed, private, not-for-profit center of excellence providing a comprehensive system of inpatient and outpatient neurorehabilitation. https://craighospital.org
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jandel Allen-Davis, M.D (00:04):
Welcome to Unstoppable at Craig, where
we pull back the curtain on whatmakes healthy workplace
cultures click and what happenswhen people are empowered to
expand the boundaries of what ispossible.
We'll explore the perspectivesof employees and leaders who
have carte blanche to speaktheir truths, tell their stories
and unlock uncommon ways ofapproaching challenges.
I'm Dr Jandell Allen-Davis, ceoand President of Craig Hospital
(00:28):
, a world-renownedrehabilitation hospital that
exclusively specializes in theneurorehabilitation and research
of patients with spinal cordand brain injury.
Join me as we learn from peoplewho love what they do and what
happens when fear doesn't stifleinnovation, and what happens
(00:49):
when fear doesn't stifleinnovation.
So this particular Unstoppableat Craig episode is I've been
excited to do and have beenlooking forward to for a couple
reasons.
One it's our first one wherewe're not all in the same room,
so that's a little differentthan typical.
But the other is this is thefirst time we're having an
opportunity to talk to a coupleof amazing human beings who are
also Craig grads and have somephenomenal stories to tell and
(01:13):
work that they're doing that isreally worth the world knowing
way more about than we alreadydo.
So, this should be, I hope, agreat conversation and
discussion and stimulate somegreat conversation and interest
out in the world beyondcertainly the three of us right
now, so we'll see where thingsgo.
So I'm joined today by JasonStauffer, who is the CURE
(01:34):
Advocacy Network Manager forUnite to Fight Paralysis, and
Quinn Brett, who is the sameorganization's Development
Director, and I had a chance tomeet them about a year and a
half ago more formally when theywere back here at Craig and
spend some time with them and,as I said, in addition to just
people who are committed in waysthat you might not necessarily
(01:56):
always see, they're just alsoreally super cool people.
So I'm excited to have thechance to talk with them.
Jason Stoffer (02:02):
And so welcome, hello Jandell.
This is Jason.
Yeah, thanks so much.
I'm excited to have the chanceto talk with them, and so
welcome, hello Jandell.
This is Jason.
Yeah, thanks so much.
I'm super honored to be thosefirst Craig alum folks on the
podcast, so really lookingforward to the conversation.
Thanks for having us.
Jandel Allen-Davis, M.D. (02:19):
Oh, you bet.
Thanks so much, Quinn, and Iwould go so far as to say and
may you not be the last.
Let's sort of keep this thinggoing.
Quinn Brett (02:28):
I think maybe to start can you each take some
time and just tell us a littlebit about yourselves, minnesota
and moved to Estes Park,colorado in my early twenties,
discovered rock climbing andfell in love with rock climbing,
(02:49):
and Estes Park, colorado is afantastic place to cut your
teeth and become upwards of aworld-class athlete, as there's
many that live there TommyCaldwell and Kelly Cordes and
Paige Clausen all professionalrock climbers, who I was
surrounded by and inspired me topush myself a little bit
further.
And in 2017, I was rockclimbing in Yosemite National
(03:10):
Park on El Capitan the big 3,000foot cliff there, something
that I'd climbed many a timesand have speed records on and I
fell and I broke my back and Iam now a T12 complete injury,
and that brought me to CraigHospital, and around that same
time is when my friend Jason wasinjured, and so we met, in fact
(03:32):
, at Craig Hospital in ourinitial stay in 2017.
Thanks, quinn.
Jandel Allen-Davis, M.D. (03:37):
How about you, Jason?
Jason Stoffer (03:40):
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 apretty adventurous and active
life and have done some coolstuff in the world of like
emergency medical or emergencyservices, some wildland
(04:02):
firefighting for GlacierNational Park and volunteered
with an organization called theAlaska Mountain Rescue Group,
and while we lived in Alaska for10 years the we is actually my
wife and I, Lori and myself, andwe have three kids and yeah, so
what I was doing right prior tomy accident I was a federal law
(04:22):
enforcement officer working uphere on the northern border.
So I live in Northwest Montanaand I was called into a work
meeting that took place during awinter storm, which was pretty
nasty and so outside of my dutyhours, called in, hit a patch of
black ice on the road, hadreally the only accident I've
(04:44):
had in my whole driving careerand it was a doozy Went off the
road, hit a ditch, flipped threetimes my service weapon, hit a
seatbelt unlatch in the truckthat I was driving, which made
my seatbelt splay open and Iwent through a windshield, flew
over 100 feet, Wound upinadvertently in this fun club
(05:07):
of spinal cord injury.
So, yes, that brought me toCraig Hospital.
Yeah, that's kind of where thiswhole thing and the work that
we do and this relationship andfriendship with Quinn and all
those things began.
Jandel Allen-Davis, M.D. (05:20):
I think about the two of you
through the stories you justtold, as folks who the injuries
are, and they haven't stoppedyou in so many ways, I'd imagine
, even in terms of the love andof things you want to do in the
outdoors, but also certainly thework that you do with Unite to
Fight Paralysis, and I'd love itif you all would talk about
what is Unite to Fight Paralysisfor our listeners.
Quinn Brett (05:41):
Yeah, unite to Fight Paralysis is an
organization, small, nonprofitthat maybe Jason can help expand
my thoughts here but we educateand advocate in the spinal cord
injury research space with thehopes of expediting the research
process.
This injury is so specific andso many nuances, person to
(06:03):
person and individuality, thatin order to better understand in
the research landscape, maybeyou should meet and talk and
work alongside people with theinjury who can help describe
what's actually happening totheir bodies, with their
bladders, their bowels, theirsexual function, their sensation
, their blood pressure, ratherthan just making assumptions or
(06:24):
guessing out of thin air.
So our work tries to put peoplewith the injury in these spaces
, from advocating for moreresearch to putting you in the
lab to consult on the research.
Our baseline is educating ourown community and others and
then putting us in the spaces.
Jason Stoffer (06:41):
We're becoming more of a platform, I believe,
like a platform for people'svoice, a platform for the
dissatisfied.
Early on in this injury, thereare pressures that compel us to
quote unquote move on, acceptwhat's happened to you and move
on and try to enjoy the rest ofyour life however you're able.
(07:02):
And for some folks that worksout.
But for some folks, you know,that's not a satisfying answer
and they they sort of railagainst it and they're looking
for ways to get involved orchange their world for the
better.
And so there's a couplecharacteristics I feel like that
describe a unite to fightysis,which is you, the number two FP,
(07:26):
you two FP, and those two wordsthat really pop into my mind
are one audacity.
I mean this belief that we cando something important right,
with enough folks jumping onboard and enough energy behind
it.
Number two we stand outside ofthis expectation of the disabled
community in general, which hasexisted for a long time, which
is to be meek and mild andthankful.
(07:48):
And you know, don't raise afuss, 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 troublesometimes.
Jandel Allen-Davis, M.D. (08:04):
You know, as I first of all, I love
this.
I heard impatience in that, asopposed to contrarian and
inappropriately impatient.
You know, when we think aboutyou know whether we use phrases
like marginalized or disaffectedor forgotten or invisible
populations or communities.
We ought to have a heck of alot more impatience, I think,
(08:27):
than we have.
Before we move on, I want tostay on this for a minute.
What all falls under the sortof umbrella of cure as you all
think about it, and how has thatevolved in your thinking and
even in terms of how's it makingyou more contrarian, I'd say,
or impatient?
Quinn Brett (08:46):
I'd say, or impatient A cure.
If one were to think of it aseverything and anything returned
from the person I was before myinjury, before October 11th
2017, that would be a cure.
But Unite to Fight Paralysisand Jason and I, in particular,
really try to strongly encouragethat.
Really try to stronglyencourage that there are lots of
(09:08):
little cures along the way,that it is a spectrum that to
improve our bladder function, toimprove our bowel function, to.
For me, I have an exceptionalamount of nerve pain.
To take that away, one littlecure for my nerve pain would
increase my quality of lifeexponentially and with our
higher level friends, theability to breathe, the ability
to hand grasp while you're notwalking and running up mountains
(09:32):
like you used to, if you canreturn hand function, what you
can return to work, to play, toindependence, those things.
So Unite to Fight Paralysis.
We strive to remind our owncommunity and the greater
community that, while there isthat pie in the sky cure, way
the heck out there and we areworking towards that.
(09:53):
Let's remind the researchlandscape and advocate for
ourselves that we need to workon 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 meanthat that's less than cure.
Jason Stoffer (10:18):
So cure we mentioned it's a controversial
word, right, and really theperspective of the person who's
saying the word comes into mind.
I mean, you know we have likean able-bodied population that
thinks of this word cure and wehave folks living with this
injury that think of this wordcure and what that means.
And you know you can hash itout even further to say, oh, are
(10:40):
you talking about capital Ccure or like what Quinn
mentioned, like these small Ccures are plural right,
functional recovery along thispath.
But I think one of the reasonswhy and this is something that
Quinn and I have really soughtto change again back to this
audacity, if you can change theway something is seen in a whole
community this is one of thethings that we would want to do,
(11:02):
because for both of us, wenever understood why there was a
historical competition betweencare and cure.
It was called the care-curedivide, right, that people
resisted this word cure,especially when you're looking
at a population of folks who arephysically disabled or mobility
(11:24):
issues or whatever and thatthat word cure was synonymous
with fix, right, and if somebodywas to be fixed, that would
imply that they are broken andnobody really wants to consider
themselves broken, right.
So why cure me, why try to fixme, right?
But the other side, the nuanceto that is I understand that
(11:46):
perspective and I and I respectit there's some amount of like
this word shame that comes withit, right, like with the cure,
you know the cure thing, andlike fighting against it.
It came, it came from this deep, deep history of disability
rights, right, and folks thatwere marginalized and pushed to
the side and essentially, weremade to feel shameful about
(12:09):
their disabilities, right.
And what's kind of really coolis, you know, in the sixties and
seventies, during some of thecivil rights era, you know,
there were some people that cameto the scene and totally
flipped the script on that towhere, like, disability pride
became a thing.
I mean for myself.
I don't really think about mydisability in terms of something
(12:30):
I'm shameful of or that I'mproud of.
It's very pragmatic for me thatit's.
I was a 40 year old man thatlost a bunch of physical
functions and and so, yeah, thiskind of marching toward this
word, the capital C cure getsyou 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 orsegue and it has to do with and
I love this care-cure divide.
I'd love just if each of youwould spend a little time
talking about those early daysat Craig Hospital.
What was it like in those earlydays 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'tthinking care cure divide,
(13:13):
that's new language.
But let's talk a little bitabout 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 Ialso have an emergency medicine
background.
I was a climbing ranger inRocky Mountain National Park.
So the very people that rescuedme off of the cliff in El
Capitan in Yosemite, that's thejob I was doing in Rocky
Mountain National Park.
So a curious mind, especiallymedically minded, and, I guess,
(13:41):
an achiever of let's do better,let's try, let's try linking
mountains that have never beenclimbed before.
So that's mindset of doingthings that have never been
achieved before, and has stuckwith me.
And so in the hospital, whenfirst learning of my injury and
first learning of the state,like just seeing my wheelchair
(14:02):
for instance, I joked a longtime that, wow, like the
hardware, the wheelchair, thethings like these all seem
archaic to me in this time andage that we are in.
Nothing has changed.
Our processes or our inventionshaven't been improved.
It's kind of like we've madethe wheel and we put some stuff
(14:23):
around it.
Here's your wheelchair.
And to me I was so disappointedand this is really as far as
we've come with these physicalitems.
But also in the state ofresearch my mind went to, of
course, because my healing, Iwas desperate to find stories of
anyone who had twitched a toeand was able to walk again.
(14:44):
And you're desperate to findthose narratives and maybe find
your path heading that way.
And then, of course, you diveinto the research landscape or
you hear stories oh, like thisperson in Bavaria got stem cells
and they're walking again.
And I had friends there was aGoFundMe and there was friends
that were encouraging me to goabroad and go get stem cells.
(15:07):
Why not?
But my rational brain jumpedinto play there and was like I
mean, if these really worked,wouldn't we all be walking?
And then understanding myinjury even more, of meeting
other people at Craig Hospitalthat are T12s and my calves
twitch all the time.
Her calves don't twitch all thetime.
Huh, again my medical mindedbrain of being like well, okay,
(15:29):
well, when do you get the stemcells?
Does that have an effect?
What is your exact injury?
Does that have an effect?
And so all of these nuancedlayers that weren't necessarily
being educated to me and I hadto seek out because of my
curious mind I found missing.
I just wanted more informationand I wanted more information
about my injury and about theresearch.
And should I go spend $100,000in a foreign country, or should
(15:53):
I not?
And if I don't, am I going toregret it?
All of these things, I guess Ijust found myself wanting
concise, objective information.
Jandel Allen-Davis, M.D. (16:03):
Did you see that zeal, that desire
to look for stories ornarratives that push beyond?
I'm going to call it thesymbolism of the wheelchair,
because it's interesting how youput that.
Did you see that in conflictwith what you were having to
learn and do around skills andthings at Craig?
And how does it get integrated?
(16:23):
Like there are?
Quinn Brett (16:24):
so many people we are so fortunate to go to have
gone to Craig Hospital and not anursing home and we are so
fortunate to have learned ADLsand transfer boards and how to
drive a car.
We are so fortunate to havethose things.
But those are ticking the boxesand I just wanted a few more
boxes to be ticked in myeducational rounded experience
(16:45):
at Craig Hospital.
Jandel Allen-Davis, M.D. (16:46):
And for those who don't know ADLs,
it's the activities of dailyliving.
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 apositive.
Always come down to when Ithink about Craig is always like
a positive, like warm place inmy heart, I think because it was
this place that was teaching meall of these things that I
needed to take care of myselfand to be independent.
(17:14):
And as I look back and peoplethat I've met from other rehab
hospitals and various things, Imean I'm like how did you not
learn that?
In other words, I sawlimitations in so many ways and
it made me so appreciate what Iwas privy to at Craig Hospital.
How can we be more cognizant ofthe way that we have an effect
(17:39):
on these new patients and ifthey ask questions that are that
are seeming to be wrapped up inin hope like, well, what is
science doing?
What's what's going on withbladder?
What's going on with bowel,what's going on with pain,
what's going on with pressuresores and these types of things
that you know to have like aresource?
(17:59):
I wish I would have had aresource to answer those
questions that Craig Hospital orany other model system is
essentially not reallyresponsible for answering.
I mean the goal of a modelsystem, rehab facility or center
is to get people stabilized andget them integrated back into
their community and get themable to be able to live their
(18:22):
days with independence, so thatthey can go on and do these
things that they're interestedin, like spinal cord injury
advocacy or like trying to crossthe Grand Canyon on a trike.
Jandel Allen-Davis, M.D. (18:34):
Let's talk first about this concept
that you have lifted up, anotherspectrum of, or it is a
spectrum around, the differentways that hope shows up or is
defined, the way that you allthink about it.
Jason Stoffer (18:46):
Yeah, I mean looking back on.
So we're seven years out fromthis whole experience.
I've had a lot of time to thinkabout it and I feel like the
I've been able to summarize inmy own head my early experience
with hope and I just want toqualify that when I'm saying
hope, I'm talking about hope ofphysical recovery.
(19:08):
There's different types of hopefor different things, right,
like hope that you're going tohave connection in society and
various things, but I'm talkingabout specifically hope for
physical recovery things.
But I'm talking aboutspecifically hope for physical
recovery.
There's kind of boiled down tome to like three versions of
that, right, which is you have ano hope version, you have a
(19:28):
kind of a false hope version andthen you have an informed hope
version and those kind of layonto the characters or the
players that are present at thetime right, I mean when I was
going through inpatient myhospital and also somewhat at
Craig, you have these cliniciansthat their main job in life is
(19:51):
to get you moving forward.
Clinicians, this chatter aboutphysical recovery or cure I'm
going to walk again or I'm goingto beat the odds can sometimes
get in the way of the job thatthey're trying to do, which is
just to get you stabilized,moving forward, the things I've
said before, right, and so it'sactually kind of like in their
(20:13):
favor for you to not be thinkingabout you beating the odds or
the research that's happening or, you know, going back to look
anything like the life that youhad before spinal cord injury,
because they're they're tryingto get you to accomplish
something.
I have a really great exampleof that and I, like I said, when
I met some folks at some ofthese other rehab hospitals and
(20:33):
there was a gal perfectly, shewas a para um, she had perfect
use of her arms, upper body, butshe could not transfer into a
car and I asked her what's goingon with that?
Did you, when you were ininpatient rehab, wherever you
were, did they not teach you howto do these transfers?
And she said, oh yeah, theytaught me.
I knew that I wasn't going toneed it because I was going to
(20:56):
get healed.
You know, that's one version ofthis hope that can kind of like
get in the way.
It got in the way for her tothe point where she lost the
ability to move through her daywith any kind of independence.
So you can see why for aclinician.
They don't almost don't wantyou thinking about it, so they
don't really encourage you to betalking about that kind of hope
, right?
So then what happens is youmove into what this young lady
(21:20):
had, which is like a false hope,which is you know what, they
don't know what they're talkingabout.
These clinicians, theseneurosurgeons, these PMNR
doctors I'm going to beat theodds and I'm going to Google my
way to it, and so the answer tothat at least what I found in
Unite to Fight Paralysis and,honestly, what Quinn and I are
helping to even now shape, uniteto Fight Paralysis and what we
(21:42):
do and what we think is to offerthis third option, which is
informed hope, which is to say,here are some objective
resources of people that areactually doing something about
this injury breathing, autonomicdysreflexia, and this list that
goes on and on and on and on ofthese 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 fiveyears, in five years, stem
cells it'll be, it'll happen foryou.
And our community is just likeyeah, yeah, yeah, call me when
it's ready for me, and then theydon't participate in any of
this advocacy or and speaking upfor the small things that
really would improve our qualityof life, be it on the care side
(22:23):
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 accommodativeskills and there's a way that
the both do play together andcan play together.
And that's one of the things I'mproud about around how our
psychologists, as well as PM&Rsand the others, sort of try to
figure out how we meet peoplewhere they are.
(22:47):
And there's always way more thatwe can do that you all are
bringing up, and I like thiscare-cure divide.
And how do we narrow the divideby integrating these things in
a way that I would say respectand meet a given person where
they are.
But we do have a really robustpeer mentoring program here at
Craig, and I'd wonder, just sortof thread that I chose to pull
together is the idea of howcommunity groups and
organizations how do they stepin in a way in terms of some of
(23:10):
the things that you all sofervently not only believe but
know in your heart could pushthis agenda forward.
And so, quinn, I'd ask you thathow can we use some of these
resources in a different way, sothat it isn't all on a Craig
Hospital, both while people arein patients but even beyond,
because I know that's in factwhere you all spend the bulk of
(23:31):
your time?
Quinn Brett (23:32):
So Jason and I hiked the Grand Canyon in our
hand cycles and we're the firstto do so from the South Rim to
the North Rim and in part Iwanted to make a film about that
kind of a visual representationof the divide Sure, and that
could be from care to cure, butalso a divide within our own
community.
So what happens is, I feel, iswhen you're not exposed to this
(23:54):
stuff or you're in the no hopespace, it's hard to carry this
through in a mentorship programor anywhere, because it's just
untalked about.
And particularly with ourinjury level, jason and I are
fortunate enough to be lowerlevel paraplegics.
Our quality of life, our timeof day, things like bathroom
programs, all of that thosethings don't occupy our life at
(24:17):
nearly as much as higher levelinjuries.
So we have the bandwidth to dothis fighting, this advocacy
work, and so Jason and I havebeen trying to remind our own
community, in particular theones that have more bandwidth to
do this advocacy Gosh thatcould be something that applies
to all of us in terms of are wereally using our capacities and
(24:38):
our skills and our privilege?
Jandel Allen-Davis, M.D (24:40):
Because it's an interesting variation
on privilege you're talkingabout.
Jason Stoffer (24:44):
When I think about all these secondary
conditions that spinal cordinjury brings, and the reason
why that we do this work is, youknow, I can give you this long
list of all the things thatwe're dealing with.
Okay, and you guys are verywell aware of it as clinicians
and you see it every day, butfor me, all of these problems
have faces and names attached tothem.
(25:05):
I'm just thinking lately and Ikind of get a little bit
emotional thinking about it.
I'm thinking about my buddy.
He lives okay, this is what youdon't see of anybody rolling at
their power wheel to or from adifferent appointment or
something.
This is somebody and they'remany years out from the injury.
(25:25):
They're alone in theirapartment at this moment and
they're dealing with pneumoniaand they can't cough, they can't
clear their lungs.
I think about and I've asked himwhat do you do, man?
He says well, the only thing Ican do is to tilt my chair back
as far as I can possibly so thatthe mucus that's in my lungs
(25:47):
drains through gravity out of mymouth, where I can try to
muster a movement that resemblesa cough but is not even close
to it, and that's running acrossmy face and down on the floor
Like this is my friend and thisis what he's dealing with, right
, this terror, small terror ofhaving to contract contracting a
(26:09):
cold Again.
The reason I bring all this upis there is this portion of our
community who is able to adaptand they're able to get a grant
for a trike, you know, they'reable to be exposed to the
education that Craig brings.
But there is a huge portion whois not.
And these physical issues,these secondary conditions, they
are huge and they'reinsurmountable.
(26:30):
I think that is a huge reasonwhy we do this work and why we
try to show up and why we try totalk to legislators and why we
try to get people involved inlabs and on and on and on, and
why education is so important.
But I don't know why.
I just felt like I kind ofneeded to bring that up because
it's a very real picture of whatspinal cord injury is.
Jandel Allen-Davis, M.D. (26:51):
You know there was a couple of
things that came to mind andthank you for sharing those
stories.
As I've said to patients, notevery day is a great day at
Craig.
I don't care how like you said,doing the Grand Canyon from, you
know, one rim to the other butnot every day is a great day,
and I think that's some of theinvisible parts that are missing
, and it brings up a really cool, I think, transition that I
(27:13):
really would love you all totalk about, because, at the
heart of it, what Unstoppable atCraig seeks to explore through
story and through perspectivesand reflections, is what is the
stuff of leadership.
You know what's it take tobuild great cultures, what's it
take to do the kind of work thatwe can get beyond 1% Gosh, even
(27:34):
5% more folks involved would bean amazing thing.
And you know I've been in thisadvocacy space for a number of
years, not just in disabilityrights but just in health care
advocacy for years, and you knowit takes a different kind of
leadership, I think.
And first of all, I ask you allif you agree, and if that's the
case, what does advocacyleadership not mean?
(27:58):
But what do you think itrequires?
Jason Stoffer (27:59):
that's different from you know what I do every
day when I come to Craig and Ihope serve as a halfway decent
leader, that fire that you haveor dissatisfaction whether
that's an injustice or you knowwhatever it is that you are
extremely dissatisfied and evenangry about and harnessing that
(28:19):
as your fire, your battery, butthen putting it on some wheels
by imposing organization andaction and actionable plans
towards that.
So using that fire, not gettingrid of it like not hey, accept
this and move on, but harness itright to make some sort of
(28:42):
change in your world.
And I think that's what we tryto do at Unite to Fight
Paralysis.
I mean with the advocates thatwe have.
They come to the table and theysee it as a place where they
can be dissatisfied and wherethey can go and tell their
stories and where they can gaina voice.
And it's really advocacymanagement at that point, when
people are doing that, is easyyou just let people talk, you
(29:04):
just give them, you open thedoor to a senator's office and
you let people tell theirstories and you try to educate
or whatever to be able to gainthe confidence to tell your
story, to gain your voice.
So I think that's really a hugepart of that.
Jandel Allen-Davis, M.D. (29:20):
You know, when I think about not
just advocacy but policy, andthen politics and the whole
morass, it can sometimes feellike 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 youwent, yes, yes, I mean it's
been awesome for me to nowreturn to DC in a different lens
and advocating for disabilityand something that I noticed, I
guess, the first time that Iwent to DC before my injury.
I definitely was nervous and itfelt like a used car salesman,
(29:52):
like you're just talking topeople who don't give a crap and
they don't really understand,and it's totally wild.
But to return and go on thebehalf of disability and spinal
cord injury and accessibilityand to realize that it one hits
a lot more, strikes a lot morenerve with people, they have an
(30:14):
easier attachment to it acrossthe aisles, both democratic and
republican sides.
But also realizing that myrelationships because of the
relationships I had builtprevious to my injury, in
returning the things that it hasbrought, that it's just another
form of relationship buildingand while it did feel sleazy at
first, I will say it's continuednow that I have these
(30:37):
relationships with people in DCand they have called me out of
the blue saying, hey, we want towrite a bill for paralyzed
veterans and going to ournational parks.
What should we do?
Quinn Brett, you seem like areally lovely resource for that,
and so just reminding that ourstories, I think for me getting
over the burden or the stigma ofnow in person with a disability
(30:58):
, and I should just yes, asJason mentioned always be
grateful, always say thank you,never be a burden and never push
the boundaries, shifting thatnarrative to know, my story
matters and the only way thatyou're going to connect with
people is through your story,and the only way that change is
happening is by having more ofus tell our stories and
(31:20):
realizing that, oh, this isactually an issue.
There's more than 1%, there's5% of these people.
Yeah, by including more of ourvoices 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.
Jandel Allen-Davis, M.D. (31:38):
So talk about leadership and
advocacy versus others, andthat'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 thisis the lane that we, that we
swim in Right, and we try not todivert from it too much and
they want to do something like,they want to get involved, they
want to get active Right, andunfortunately there are some
(32:06):
want to get involved.
They want to get active andunfortunately there are some
steps that are involved.
If you come to an organizationand you want to get involved,
well, you don't want to justjump in there and start yelling
around or whatever that you'regoing to do.
You want to know what you'retalking about.
The model that we've used atUnite to Fight Paralysis is
really the model of the AIDSadvocacy of the 90s and into the
2000s.
(32:28):
These folks were tired of seeingeach other die and they were
tired of not having answers, andso they got loud and they spoke
up.
But one of the biggest,probably the things that they
had in their favor was they hadthis educational branch of that
advocacy, of the organizedadvocacy, and they were reading
peer-reviewed research.
They knew what they weretalking about when they showed
(32:50):
up.
They could not be shut up assaying or dismissed by saying,
ah, that's fine and cute, butyou don't know what you're
talking about.
They knew what they weretalking about.
They knew the numbers to cite,they knew the data that was out
there.
They knew, for instance, onething we bring up a lot is that,
okay, yes, you might have $140million going towards spinal
(33:13):
cord injury research from thebig federal pockets or some of
the larger private, but did youknow that half of that money
goes elsewhere, besides the workfor which it was funded, in
administrative costs?
So when you show up and youtell a legislator about
administrative costs, it ispersuasive, and so one of the
(33:34):
first steps is really to justeducate, educate, educate,
educate.
And so, at Unite to FightParalysis, we have right now, I
think, about 115 podcasts withsome of the greatest and most
influential researchers in theworld, but also up and coming
folks, folks with the injury,like lived experience
researchers, like a wholevariety of people, and we have
(33:56):
these conversations about allthese things, and so that's like
a treasure trove of informationto give you context about this
injury and what's happening.
That's like a treasure trove ofinformation to give you context
about this injury and what'shappening, but also Kate
Willett's book.
We encourage people to downloadand read.
It's free.
You can get it from Amazon oryou can do book on tape.
That was for Quinn and I was ahuge 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 dreamdream.
I mean, if there was enoughtime and talent and treasure to
really fuel your, your visionfor what UTFP and those on whose
(34:42):
behalf you work could do, justwhat would you do?
What would it be?
What's that shining castle onthe hill look like in your mind?
Jason Stoffer (34:53):
I don't want my buddy to.
I want my buddy to be able tocough You're going to make me
cry, yeah, I want him to be ableto clear his lungs and not live
in terror that he's going todrown.
And I want the newly injureddad to be able to help his kid
learn how to ride a bike again.
I want Quinn to be able to peakbag and be on top of a mountain
(35:14):
again and I want all thesethings for our people and I
don't want it to be too much ofa burden to ask.
And so I don't know how we dothat.
I have ideas.
I do know that there's lackingright now any single point of
organization that takes any ofthe random work that's happening
(35:35):
in their silos, whether it bebio or whether it be
neuromodulation, or addressingthis idea of administrative
costs or all of these obstaclesthat are on and on and on.
There's nobody, there's nosingle point that's organizing
any of that work, which meansthat much of that work and much
of the dollars that are beingthrown into the air by many
(35:57):
granting agencies are just beingwasted because there's no
coordination of effort.
Being wasted because there's nocoordination of effort.
If I could snap my fingers andtomorrow have an organization or
a plan or a moonshot, orwhatever you want to call it,
that organized these things.
I think I mean that's practicalright, like if I could really
snap my fingers and make ithappen, spinal cord injury
(36:18):
wouldn't exist, even though itis.
You know, it's an interesting,it's an interesting thing to
deal with.
It's got some really incrediblecommunity, 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 fightparalysis pie in the sky, is
just more just, more peopleknowing that we exist in the
work that we do and more of ourcommunity and family and friends
being inspired to join ourcommunity 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 iscoordinated.
If you ask me, it's the singlebiggest problem in advocacy work
, regardless of the topic, iseverybody has their own
nonprofits.
No one does gap work to figureout where are we overlapping,
(37:13):
what's not being covered?
But is it?
The sum is greater than thepart?
What's the phrase?
The whole is greater than thesum 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 otherways.
So it's the second thing thishour where you've said I could
say that about education andhealthcare more broadly, and
(37:34):
crime and climate, and you nameit, and land and water and
violence and a lot of otherthings.
Quinn Brett (37:41):
Our executive director has a his pie in the
sky is this translational SCIfactory, essentially putting it
all together in one space.
The researchers, all of it Likelet's, let's reinvent this
whole system all of it Likelet's let's reinvent this whole
system.
Jandel Allen-Davis, M.D. (38:02):
Are there intangible things that you
think you received throughworking with the amazing teams
here at Craig that in some wayare part of your why of doing
the work you do now?
Are there things that were kindof that subcellular thing that
drives you and enables you andmotivates you and energizes you,
or energized you to say this isthe direction I'm going,
(38:24):
because you had choices.
You didn't have to get involvedwith 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 meldedwith my personality and being at
Craig was just thinking outsidethe box and ingenuity, and so
being paired with OTs and PTs ofsame like this isn't working
for you.
Let's try this.
Like that ability to beflexible and try new things at
(38:52):
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?
Jason Stoffer (39:02):
Oh well, like going to the malls to learn
escalator skills.
We had to rush and do it veryquickly while nobody was looking
, because the mall cops wouldcome and tell you that you can't
do that, you know, or thatyou're not supposed to do that.
(39:24):
That's why we have elevatorsand yada, yada.
And I remember that thephysical therapists and OTs and
whoever was with us on thosefield trips, we would rush and
do it and like run Like we weredoing something super naughty
which was great.
So now I don't giving thatconfidence of like hey, like
Quinn says, a lot too is liketake up space, man, take up
(39:45):
space.
It's been a rough seven years.
So this idea of like like Idon't want to use the elevator
because I can't find it for one,it's adding 15 more minutes
onto my transit through anairport.
So I'm just going to go up theescalator and you learn to deal
with people that say you can'tdo that.
The other thing too is thisanti-tipper thing that for me,
for Craig Hospital I don't knowif it's a Western or Mountain
(40:07):
West personality of adventure,but getting rid of those
anti-tippers as soon as possiblewas huge, and to see the
limitations in other places thatthey weren't doing that or
instilling that confidence.
You know being dangerous, likeallowing yourself to go and do
dangerous things I mean it's allin like the best way, like
(40:27):
these are the things from Craigthat I think of that I
appreciate the most is not likethe 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 amountof like margin I get back in my
(40:50):
day because I learned so muchindependence there.
Jandel Allen-Davis, M.D. (40:54):
That's beautiful.
And lest our liabilityinsurance carriers are listening
when he says, do somethingdangerous, I understand both
metaphorically, but really it'sone of the things we say is that
the only way to really be ableto live in the full meteor of
your life and your existencepost these injuries is that
(41:16):
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 anescalator anymore without
thinking about you.
You guys, let's get it donebefore the cops come.
I just love it and we're goingto do it.
We're going to do it because wesee on the other side what that
serves.
So I just thank y you all formaking 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 theanswers to these folks that are
asking what's happening inresearch and what are my hopes
for recovery as far as scienceis concerned, if you don't have
those answers, if you couldpoint them to us?
That's why we exist.
It was born out of our own forat least Quinn and I is born out
(42:00):
of our own personal experiencesof what we wanted early on, not
just from Craig, but just thewhole experience.
So if we can be a resource toanybody out there, come join us,
come talk to us.
I hope that we can return thefavor to Craig, you know, by
being a resource for you guys.
So, yeah, we really superappreciate the time, jendell.
(42:22):
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 beautifulways.
Thank you so much.
Welcome to Unstoppable at Craig, where
we pull back the curtain on whatmakes healthy workplace
cultures click and what happenswhen people are empowered to
expand the boundaries of what ispossible.
We'll explore the perspectivesof employees and leaders who
have carte blanche to speaktheir truths, tell their stories
and unlock uncommon ways ofapproaching challenges.
I'm Dr Jandell Allen-Davis, ceoand President of Craig Hospital
(00:28):
, a world-renownedrehabilitation hospital that
exclusively specializes in theneurorehabilitation and research
of patients with spinal cordand brain injury.
Join me as we learn from peoplewho love what they do and what
happens when fear doesn't stifleinnovation, and what happens
(00:49):
when fear doesn't stifleinnovation.
So this particular Unstoppableat Craig episode is I've been
excited to do and have beenlooking forward to for a couple
reasons.
One it's our first one wherewe're not all in the same room,
so that's a little differentthan typical.
But the other is this is thefirst time we're having an
opportunity to talk to a coupleof amazing human beings who are
also Craig grads and have somephenomenal stories to tell and
(01:13):
work that they're doing that isreally worth the world knowing
way more about than we alreadydo.
So, this should be, I hope, agreat conversation and
discussion and stimulate somegreat conversation and interest
out in the world beyondcertainly the three of us right
now, so we'll see where thingsgo.
So I'm joined today by JasonStauffer, who is the CURE
(01:34):
Advocacy Network Manager forUnite to Fight Paralysis, and
Quinn Brett, who is the sameorganization's Development
Director, and I had a chance tomeet them about a year and a
half ago more formally when theywere back here at Craig and
spend some time with them and,as I said, in addition to just
people who are committed in waysthat you might not necessarily
(01:56):
always see, they're just alsoreally super cool people.
So I'm excited to have thechance to talk with them.
Jason Stoffer (02:02):
And so welcome, hello Jandell.
This is Jason.
Yeah, thanks so much.
I'm excited to have the chanceto talk with them, and so
welcome, hello Jandell.
This is Jason.
Yeah, thanks so much.
I'm super honored to be thosefirst Craig alum folks on the
podcast, so really lookingforward to the conversation.
Thanks for having us.
Jandel Allen-Davis, M.D. (02:19):
Oh, you bet.
Thanks so much, Quinn, and Iwould go so far as to say and
may you not be the last.
Let's sort of keep this thinggoing.
Quinn Brett (02:28):
I think maybe to start can you each take some
time and just tell us a littlebit about yourselves, minnesota
and moved to Estes Park,colorado in my early twenties,
discovered rock climbing andfell in love with rock climbing,
(02:49):
and Estes Park, colorado is afantastic place to cut your
teeth and become upwards of aworld-class athlete, as there's
many that live there TommyCaldwell and Kelly Cordes and
Paige Clausen all professionalrock climbers, who I was
surrounded by and inspired me topush myself a little bit
further.
And in 2017, I was rockclimbing in Yosemite National
(03:10):
Park on El Capitan the big 3,000foot cliff there, something
that I'd climbed many a timesand have speed records on and I
fell and I broke my back and Iam now a T12 complete injury,
and that brought me to CraigHospital, and around that same
time is when my friend Jason wasinjured, and so we met, in fact
(03:32):
, at Craig Hospital in ourinitial stay in 2017.
Thanks, quinn.
Jandel Allen-Davis, M.D. (03:37):
How about you, Jason?
Jason Stoffer (03:40):
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 apretty adventurous and active
life and have done some coolstuff in the world of like
emergency medical or emergencyservices, some wildland
(04:02):
firefighting for GlacierNational Park and volunteered
with an organization called theAlaska Mountain Rescue Group,
and while we lived in Alaska for10 years the we is actually my
wife and I, Lori and myself, andwe have three kids and yeah, so
what I was doing right prior tomy accident I was a federal law
(04:22):
enforcement officer working uphere on the northern border.
So I live in Northwest Montanaand I was called into a work
meeting that took place during awinter storm, which was pretty
nasty and so outside of my dutyhours, called in, hit a patch of
black ice on the road, hadreally the only accident I've
(04:44):
had in my whole driving careerand it was a doozy Went off the
road, hit a ditch, flipped threetimes my service weapon, hit a
seatbelt unlatch in the truckthat I was driving, which made
my seatbelt splay open and Iwent through a windshield, flew
over 100 feet, Wound upinadvertently in this fun club
(05:07):
of spinal cord injury.
So, yes, that brought me toCraig Hospital.
Yeah, that's kind of where thiswhole thing and the work that
we do and this relationship andfriendship with Quinn and all
those things began.
Jandel Allen-Davis, M.D. (05:20):
I think about the two of you
through the stories you justtold, as folks who the injuries
are, and they haven't stoppedyou in so many ways, I'd imagine
, even in terms of the love andof things you want to do in the
outdoors, but also certainly thework that you do with Unite to
Fight Paralysis, and I'd love itif you all would talk about
what is Unite to Fight Paralysisfor our listeners.
Quinn Brett (05:41):
Yeah, unite to Fight Paralysis is an
organization, small, nonprofitthat maybe Jason can help expand
my thoughts here but we educateand advocate in the spinal cord
injury research space with thehopes of expediting the research
process.
This injury is so specific andso many nuances, person to
(06:03):
person and individuality, thatin order to better understand in
the research landscape, maybeyou should meet and talk and
work alongside people with theinjury who can help describe
what's actually happening totheir bodies, with their
bladders, their bowels, theirsexual function, their sensation
, their blood pressure, ratherthan just making assumptions or
(06:24):
guessing out of thin air.
So our work tries to put peoplewith the injury in these spaces
, from advocating for moreresearch to putting you in the
lab to consult on the research.
Our baseline is educating ourown community and others and
then putting us in the spaces.
Jason Stoffer (06:41):
We're becoming more of a platform, I believe,
like a platform for people'svoice, a platform for the
dissatisfied.
Early on in this injury, thereare pressures that compel us to
quote unquote move on, acceptwhat's happened to you and move
on and try to enjoy the rest ofyour life however you're able.
(07:02):
And for some folks that worksout.
But for some folks, you know,that's not a satisfying answer
and they they sort of railagainst it and they're looking
for ways to get involved orchange their world for the
better.
And so there's a couplecharacteristics I feel like that
describe a unite to fightysis,which is you, the number two FP,
(07:26):
you two FP, and those two wordsthat really pop into my mind
are one audacity.
I mean this belief that we cando something important right,
with enough folks jumping onboard and enough energy behind
it.
Number two we stand outside ofthis expectation of the disabled
community in general, which hasexisted for a long time, which
is to be meek and mild andthankful.
(07:48):
And you know, don't raise afuss, 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 troublesometimes.
Jandel Allen-Davis, M.D. (08:04):
You know, as I first of all, I love
this.
I heard impatience in that, asopposed to contrarian and
inappropriately impatient.
You know, when we think aboutyou know whether we use phrases
like marginalized or disaffectedor forgotten or invisible
populations or communities.
We ought to have a heck of alot more impatience, I think,
(08:27):
than we have.
Before we move on, I want tostay on this for a minute.
What all falls under the sortof umbrella of cure as you all
think about it, and how has thatevolved in your thinking and
even in terms of how's it makingyou more contrarian, I'd say,
or impatient?
Quinn Brett (08:46):
I'd say, or impatient A cure.
If one were to think of it aseverything and anything returned
from the person I was before myinjury, before October 11th
2017, that would be a cure.
But Unite to Fight Paralysisand Jason and I, in particular,
really try to strongly encouragethat.
Really try to stronglyencourage that there are lots of
(09:08):
little cures along the way,that it is a spectrum that to
improve our bladder function, toimprove our bowel function, to.
For me, I have an exceptionalamount of nerve pain.
To take that away, one littlecure for my nerve pain would
increase my quality of lifeexponentially and with our
higher level friends, theability to breathe, the ability
to hand grasp while you're notwalking and running up mountains
(09:32):
like you used to, if you canreturn hand function, what you
can return to work, to play, toindependence, those things.
So Unite to Fight Paralysis.
We strive to remind our owncommunity and the greater
community that, while there isthat pie in the sky cure, way
the heck out there and we areworking towards that.
(09:53):
Let's remind the researchlandscape and advocate for
ourselves that we need to workon 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 meanthat that's less than cure.
Jason Stoffer (10:18):
So cure we mentioned it's a controversial
word, right, and really theperspective of the person who's
saying the word comes into mind.
I mean, you know we have likean able-bodied population that
thinks of this word cure and wehave folks living with this
injury that think of this wordcure and what that means.
And you know you can hash itout even further to say, oh, are
(10:40):
you talking about capital Ccure or like what Quinn
mentioned, like these small Ccures are plural right,
functional recovery along thispath.
But I think one of the reasonswhy and this is something that
Quinn and I have really soughtto change again back to this
audacity, if you can change theway something is seen in a whole
community this is one of thethings that we would want to do,
(11:02):
because for both of us, wenever understood why there was a
historical competition betweencare and cure.
It was called the care-curedivide, right, that people
resisted this word cure,especially when you're looking
at a population of folks who arephysically disabled or mobility
(11:24):
issues or whatever and thatthat word cure was synonymous
with fix, right, and if somebodywas to be fixed, that would
imply that they are broken andnobody really wants to consider
themselves broken, right.
So why cure me, why try to fixme, right?
But the other side, the nuanceto that is I understand that
(11:46):
perspective and I and I respectit there's some amount of like
this word shame that comes withit, right, like with the cure,
you know the cure thing, andlike fighting against it.
It came, it came from this deep, deep history of disability
rights, right, and folks thatwere marginalized and pushed to
the side and essentially, weremade to feel shameful about
(12:09):
their disabilities, right.
And what's kind of really coolis, you know, in the sixties and
seventies, during some of thecivil rights era, you know,
there were some people that cameto the scene and totally
flipped the script on that towhere, like, disability pride
became a thing.
I mean for myself.
I don't really think about mydisability in terms of something
(12:30):
I'm shameful of or that I'mproud of.
It's very pragmatic for me thatit's.
I was a 40 year old man thatlost a bunch of physical
functions and and so, yeah, thiskind of marching toward this
word, the capital C cure getsyou 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 orsegue and it has to do with and
I love this care-cure divide.
I'd love just if each of youwould spend a little time
talking about those early daysat Craig Hospital.
What was it like in those earlydays 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'tthinking care cure divide,
(13:13):
that's new language.
But let's talk a little bitabout 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 Ialso have an emergency medicine
background.
I was a climbing ranger inRocky Mountain National Park.
So the very people that rescuedme off of the cliff in El
Capitan in Yosemite, that's thejob I was doing in Rocky
Mountain National Park.
So a curious mind, especiallymedically minded, and, I guess,
(13:41):
an achiever of let's do better,let's try, let's try linking
mountains that have never beenclimbed before.
So that's mindset of doingthings that have never been
achieved before, and has stuckwith me.
And so in the hospital, whenfirst learning of my injury and
first learning of the state,like just seeing my wheelchair
(14:02):
for instance, I joked a longtime that, wow, like the
hardware, the wheelchair, thethings like these all seem
archaic to me in this time andage that we are in.
Nothing has changed.
Our processes or our inventionshaven't been improved.
It's kind of like we've madethe wheel and we put some stuff
(14:23):
around it.
Here's your wheelchair.
And to me I was so disappointedand this is really as far as
we've come with these physicalitems.
But also in the state ofresearch my mind went to, of
course, because my healing, Iwas desperate to find stories of
anyone who had twitched a toeand was able to walk again.
(14:44):
And you're desperate to findthose narratives and maybe find
your path heading that way.
And then, of course, you diveinto the research landscape or
you hear stories oh, like thisperson in Bavaria got stem cells
and they're walking again.
And I had friends there was aGoFundMe and there was friends
that were encouraging me to goabroad and go get stem cells.
(15:07):
Why not?
But my rational brain jumpedinto play there and was like I
mean, if these really worked,wouldn't we all be walking?
And then understanding myinjury even more, of meeting
other people at Craig Hospitalthat are T12s and my calves
twitch all the time.
Her calves don't twitch all thetime.
Huh, again my medical mindedbrain of being like well, okay,
(15:29):
well, when do you get the stemcells?
Does that have an effect?
What is your exact injury?
Does that have an effect?
And so all of these nuancedlayers that weren't necessarily
being educated to me and I hadto seek out because of my
curious mind I found missing.
I just wanted more informationand I wanted more information
about my injury and about theresearch.
And should I go spend $100,000in a foreign country, or should
(15:53):
I not?
And if I don't, am I going toregret it?
All of these things, I guess Ijust found myself wanting
concise, objective information.
Jandel Allen-Davis, M.D. (16:03):
Did you see that zeal, that desire
to look for stories ornarratives that push beyond?
I'm going to call it thesymbolism of the wheelchair,
because it's interesting how youput that.
Did you see that in conflictwith what you were having to
learn and do around skills andthings at Craig?
And how does it get integrated?
(16:23):
Like there are?
Quinn Brett (16:24):
so many people we are so fortunate to go to have
gone to Craig Hospital and not anursing home and we are so
fortunate to have learned ADLsand transfer boards and how to
drive a car.
We are so fortunate to havethose things.
But those are ticking the boxesand I just wanted a few more
boxes to be ticked in myeducational rounded experience
(16:45):
at Craig Hospital.
Jandel Allen-Davis, M.D. (16:46):
And for those who don't know ADLs,
it's the activities of dailyliving.
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 apositive.
Always come down to when Ithink about Craig is always like
a positive, like warm place inmy heart, I think because it was
this place that was teaching meall of these things that I
needed to take care of myselfand to be independent.
(17:14):
And as I look back and peoplethat I've met from other rehab
hospitals and various things, Imean I'm like how did you not
learn that?
In other words, I sawlimitations in so many ways and
it made me so appreciate what Iwas privy to at Craig Hospital.
How can we be more cognizant ofthe way that we have an effect
(17:39):
on these new patients and ifthey ask questions that are that
are seeming to be wrapped up inin hope like, well, what is
science doing?
What's what's going on withbladder?
What's going on with bowel,what's going on with pain,
what's going on with pressuresores and these types of things
that you know to have like aresource?
(17:59):
I wish I would have had aresource to answer those
questions that Craig Hospital orany other model system is
essentially not reallyresponsible for answering.
I mean the goal of a modelsystem, rehab facility or center
is to get people stabilized andget them integrated back into
their community and get themable to be able to live their
(18:22):
days with independence, so thatthey can go on and do these
things that they're interestedin, like spinal cord injury
advocacy or like trying to crossthe Grand Canyon on a trike.
Jandel Allen-Davis, M.D. (18:34):
Let's talk first about this concept
that you have lifted up, anotherspectrum of, or it is a
spectrum around, the differentways that hope shows up or is
defined, the way that you allthink about it.
Jason Stoffer (18:46):
Yeah, I mean looking back on.
So we're seven years out fromthis whole experience.
I've had a lot of time to thinkabout it and I feel like the
I've been able to summarize inmy own head my early experience
with hope and I just want toqualify that when I'm saying
hope, I'm talking about hope ofphysical recovery.
(19:08):
There's different types of hopefor different things, right,
like hope that you're going tohave connection in society and
various things, but I'm talkingabout specifically hope for
physical recovery things.
But I'm talking aboutspecifically hope for physical
recovery.
There's kind of boiled down tome to like three versions of
that, right, which is you have ano hope version, you have a
(19:28):
kind of a false hope version andthen you have an informed hope
version and those kind of layonto the characters or the
players that are present at thetime right, I mean when I was
going through inpatient myhospital and also somewhat at
Craig, you have these cliniciansthat their main job in life is
(19:51):
to get you moving forward.
Clinicians, this chatter aboutphysical recovery or cure I'm
going to walk again or I'm goingto beat the odds can sometimes
get in the way of the job thatthey're trying to do, which is
just to get you stabilized,moving forward, the things I've
said before, right, and so it'sactually kind of like in their
(20:13):
favor for you to not be thinkingabout you beating the odds or
the research that's happening or, you know, going back to look
anything like the life that youhad before spinal cord injury,
because they're they're tryingto get you to accomplish
something.
I have a really great exampleof that and I, like I said, when
I met some folks at some ofthese other rehab hospitals and
(20:33):
there was a gal perfectly, shewas a para um, she had perfect
use of her arms, upper body, butshe could not transfer into a
car and I asked her what's goingon with that?
Did you, when you were ininpatient rehab, wherever you
were, did they not teach you howto do these transfers?
And she said, oh yeah, theytaught me.
I knew that I wasn't going toneed it because I was going to
(20:56):
get healed.
You know, that's one version ofthis hope that can kind of like
get in the way.
It got in the way for her tothe point where she lost the
ability to move through her daywith any kind of independence.
So you can see why for aclinician.
They don't almost don't wantyou thinking about it, so they
don't really encourage you to betalking about that kind of hope
, right?
So then what happens is youmove into what this young lady
(21:20):
had, which is like a false hope,which is you know what, they
don't know what they're talkingabout.
These clinicians, theseneurosurgeons, these PMNR
doctors I'm going to beat theodds and I'm going to Google my
way to it, and so the answer tothat at least what I found in
Unite to Fight Paralysis and,honestly, what Quinn and I are
helping to even now shape, uniteto Fight Paralysis and what we
(21:42):
do and what we think is to offerthis third option, which is
informed hope, which is to say,here are some objective
resources of people that areactually doing something about
this injury breathing, autonomicdysreflexia, and this list that
goes on and on and on and on ofthese 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 fiveyears, in five years, stem
cells it'll be, it'll happen foryou.
And our community is just likeyeah, yeah, yeah, call me when
it's ready for me, and then theydon't participate in any of
this advocacy or and speaking upfor the small things that
really would improve our qualityof life, be it on the care side
(22:23):
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 accommodativeskills and there's a way that
the both do play together andcan play together.
And that's one of the things I'mproud about around how our
psychologists, as well as PM&Rsand the others, sort of try to
figure out how we meet peoplewhere they are.
(22:47):
And there's always way more thatwe can do that you all are
bringing up, and I like thiscare-cure divide.
And how do we narrow the divideby integrating these things in
a way that I would say respectand meet a given person where
they are.
But we do have a really robustpeer mentoring program here at
Craig, and I'd wonder, just sortof thread that I chose to pull
together is the idea of howcommunity groups and
organizations how do they stepin in a way in terms of some of
(23:10):
the things that you all sofervently not only believe but
know in your heart could pushthis agenda forward.
And so, quinn, I'd ask you thathow can we use some of these
resources in a different way, sothat it isn't all on a Craig
Hospital, both while people arein patients but even beyond,
because I know that's in factwhere you all spend the bulk of
(23:31):
your time?
Quinn Brett (23:32):
So Jason and I hiked the Grand Canyon in our
hand cycles and we're the firstto do so from the South Rim to
the North Rim and in part Iwanted to make a film about that
kind of a visual representationof the divide Sure, and that
could be from care to cure, butalso a divide within our own
community.
So what happens is, I feel, iswhen you're not exposed to this
(23:54):
stuff or you're in the no hopespace, it's hard to carry this
through in a mentorship programor anywhere, because it's just
untalked about.
And particularly with ourinjury level, jason and I are
fortunate enough to be lowerlevel paraplegics.
Our quality of life, our timeof day, things like bathroom
programs, all of that thosethings don't occupy our life at
(24:17):
nearly as much as higher levelinjuries.
So we have the bandwidth to dothis fighting, this advocacy
work, and so Jason and I havebeen trying to remind our own
community, in particular theones that have more bandwidth to
do this advocacy Gosh thatcould be something that applies
to all of us in terms of are wereally using our capacities and
(24:38):
our skills and our privilege?
Jandel Allen-Davis, M.D (24:40):
Because it's an interesting variation
on privilege you're talkingabout.
Jason Stoffer (24:44):
When I think about all these secondary
conditions that spinal cordinjury brings, and the reason
why that we do this work is, youknow, I can give you this long
list of all the things thatwe're dealing with.
Okay, and you guys are verywell aware of it as clinicians
and you see it every day, butfor me, all of these problems
have faces and names attached tothem.
(25:05):
I'm just thinking lately and Ikind of get a little bit
emotional thinking about it.
I'm thinking about my buddy.
He lives okay, this is what youdon't see of anybody rolling at
their power wheel to or from adifferent appointment or
something.
This is somebody and they'remany years out from the injury.
(25:25):
They're alone in theirapartment at this moment and
they're dealing with pneumoniaand they can't cough, they can't
clear their lungs.
I think about and I've asked himwhat do you do, man?
He says well, the only thing Ican do is to tilt my chair back
as far as I can possibly so thatthe mucus that's in my lungs
(25:47):
drains through gravity out of mymouth, where I can try to
muster a movement that resemblesa cough but is not even close
to it, and that's running acrossmy face and down on the floor
Like this is my friend and thisis what he's dealing with, right
, this terror, small terror ofhaving to contract contracting a
(26:09):
cold Again.
The reason I bring all this upis there is this portion of our
community who is able to adaptand they're able to get a grant
for a trike, you know, they'reable to be exposed to the
education that Craig brings.
But there is a huge portion whois not.
And these physical issues,these secondary conditions, they
are huge and they'reinsurmountable.
(26:30):
I think that is a huge reasonwhy we do this work and why we
try to show up and why we try totalk to legislators and why we
try to get people involved inlabs and on and on and on, and
why education is so important.
But I don't know why.
I just felt like I kind ofneeded to bring that up because
it's a very real picture of whatspinal cord injury is.
Jandel Allen-Davis, M.D. (26:51):
You know there was a couple of
things that came to mind andthank you for sharing those
stories.
As I've said to patients, notevery day is a great day at
Craig.
I don't care how like you said,doing the Grand Canyon from, you
know, one rim to the other butnot every day is a great day,
and I think that's some of theinvisible parts that are missing
, and it brings up a really cool, I think, transition that I
(27:13):
really would love you all totalk about, because, at the
heart of it, what Unstoppable atCraig seeks to explore through
story and through perspectivesand reflections, is what is the
stuff of leadership.
You know what's it take tobuild great cultures, what's it
take to do the kind of work thatwe can get beyond 1% Gosh, even
(27:34):
5% more folks involved would bean amazing thing.
And you know I've been in thisadvocacy space for a number of
years, not just in disabilityrights but just in health care
advocacy for years, and you knowit takes a different kind of
leadership, I think.
And first of all, I ask you allif you agree, and if that's the
case, what does advocacyleadership not mean?
(27:58):
But what do you think itrequires?
Jason Stoffer (27:59):
that's different from you know what I do every
day when I come to Craig and Ihope serve as a halfway decent
leader, that fire that you haveor dissatisfaction whether
that's an injustice or you knowwhatever it is that you are
extremely dissatisfied and evenangry about and harnessing that
(28:19):
as your fire, your battery, butthen putting it on some wheels
by imposing organization andaction and actionable plans
towards that.
So using that fire, not gettingrid of it like not hey, accept
this and move on, but harness itright to make some sort of
(28:42):
change in your world.
And I think that's what we tryto do at Unite to Fight
Paralysis.
I mean with the advocates thatwe have.
They come to the table and theysee it as a place where they
can be dissatisfied and wherethey can go and tell their
stories and where they can gaina voice.
And it's really advocacymanagement at that point, when
people are doing that, is easyyou just let people talk, you
(29:04):
just give them, you open thedoor to a senator's office and
you let people tell theirstories and you try to educate
or whatever to be able to gainthe confidence to tell your
story, to gain your voice.
So I think that's really a hugepart of that.
Jandel Allen-Davis, M.D. (29:20):
You know, when I think about not
just advocacy but policy, andthen politics and the whole
morass, it can sometimes feellike 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 youwent, yes, yes, I mean it's
been awesome for me to nowreturn to DC in a different lens
and advocating for disabilityand something that I noticed, I
guess, the first time that Iwent to DC before my injury.
I definitely was nervous and itfelt like a used car salesman,
(29:52):
like you're just talking topeople who don't give a crap and
they don't really understand,and it's totally wild.
But to return and go on thebehalf of disability and spinal
cord injury and accessibilityand to realize that it one hits
a lot more, strikes a lot morenerve with people, they have an
(30:14):
easier attachment to it acrossthe aisles, both democratic and
republican sides.
But also realizing that myrelationships because of the
relationships I had builtprevious to my injury, in
returning the things that it hasbrought, that it's just another
form of relationship buildingand while it did feel sleazy at
first, I will say it's continuednow that I have these
(30:37):
relationships with people in DCand they have called me out of
the blue saying, hey, we want towrite a bill for paralyzed
veterans and going to ournational parks.
What should we do?
Quinn Brett, you seem like areally lovely resource for that,
and so just reminding that ourstories, I think for me getting
over the burden or the stigma ofnow in person with a disability
(30:58):
, and I should just yes, asJason mentioned always be
grateful, always say thank you,never be a burden and never push
the boundaries, shifting thatnarrative to know, my story
matters and the only way thatyou're going to connect with
people is through your story,and the only way that change is
happening is by having more ofus tell our stories and
(31:20):
realizing that, oh, this isactually an issue.
There's more than 1%, there's5% of these people.
Yeah, by including more of ourvoices 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.
Jandel Allen-Davis, M.D. (31:38):
So talk about leadership and
advocacy versus others, andthat'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 thisis the lane that we, that we
swim in Right, and we try not todivert from it too much and
they want to do something like,they want to get involved, they
want to get active Right, andunfortunately there are some
(32:06):
want to get involved.
They want to get active andunfortunately there are some
steps that are involved.
If you come to an organizationand you want to get involved,
well, you don't want to justjump in there and start yelling
around or whatever that you'regoing to do.
You want to know what you'retalking about.
The model that we've used atUnite to Fight Paralysis is
really the model of the AIDSadvocacy of the 90s and into the
2000s.
(32:28):
These folks were tired of seeingeach other die and they were
tired of not having answers, andso they got loud and they spoke
up.
But one of the biggest,probably the things that they
had in their favor was they hadthis educational branch of that
advocacy, of the organizedadvocacy, and they were reading
peer-reviewed research.
They knew what they weretalking about when they showed
(32:50):
up.
They could not be shut up assaying or dismissed by saying,
ah, that's fine and cute, butyou don't know what you're
talking about.
They knew what they weretalking about.
They knew the numbers to cite,they knew the data that was out
there.
They knew, for instance, onething we bring up a lot is that,
okay, yes, you might have $140million going towards spinal
(33:13):
cord injury research from thebig federal pockets or some of
the larger private, but did youknow that half of that money
goes elsewhere, besides the workfor which it was funded, in
administrative costs?
So when you show up and youtell a legislator about
administrative costs, it ispersuasive, and so one of the
(33:34):
first steps is really to justeducate, educate, educate,
educate.
And so, at Unite to FightParalysis, we have right now, I
think, about 115 podcasts withsome of the greatest and most
influential researchers in theworld, but also up and coming
folks, folks with the injury,like lived experience
researchers, like a wholevariety of people, and we have
(33:56):
these conversations about allthese things, and so that's like
a treasure trove of informationto give you context about this
injury and what's happening.
That's like a treasure trove ofinformation to give you context
about this injury and what'shappening, but also Kate
Willett's book.
We encourage people to downloadand read.
It's free.
You can get it from Amazon oryou can do book on tape.
That was for Quinn and I was ahuge 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 dreamdream.
I mean, if there was enoughtime and talent and treasure to
really fuel your, your visionfor what UTFP and those on whose
(34:42):
behalf you work could do, justwhat would you do?
What would it be?
What's that shining castle onthe hill look like in your mind?
Jason Stoffer (34:53):
I don't want my buddy to.
I want my buddy to be able tocough You're going to make me
cry, yeah, I want him to be ableto clear his lungs and not live
in terror that he's going todrown.
And I want the newly injureddad to be able to help his kid
learn how to ride a bike again.
I want Quinn to be able to peakbag and be on top of a mountain
(35:14):
again and I want all thesethings for our people and I
don't want it to be too much ofa burden to ask.
And so I don't know how we dothat.
I have ideas.
I do know that there's lackingright now any single point of
organization that takes any ofthe random work that's happening
(35:35):
in their silos, whether it bebio or whether it be
neuromodulation, or addressingthis idea of administrative
costs or all of these obstaclesthat are on and on and on.
There's nobody, there's nosingle point that's organizing
any of that work, which meansthat much of that work and much
of the dollars that are beingthrown into the air by many
(35:57):
granting agencies are just beingwasted because there's no
coordination of effort.
Being wasted because there's nocoordination of effort.
If I could snap my fingers andtomorrow have an organization or
a plan or a moonshot, orwhatever you want to call it,
that organized these things.
I think I mean that's practicalright, like if I could really
snap my fingers and make ithappen, spinal cord injury
(36:18):
wouldn't exist, even though itis.
You know, it's an interesting,it's an interesting thing to
deal with.
It's got some really incrediblecommunity, 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 fightparalysis pie in the sky, is
just more just, more peopleknowing that we exist in the
work that we do and more of ourcommunity and family and friends
being inspired to join ourcommunity 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 iscoordinated.
If you ask me, it's the singlebiggest problem in advocacy work
, regardless of the topic, iseverybody has their own
nonprofits.
No one does gap work to figureout where are we overlapping,
(37:13):
what's not being covered?
But is it?
The sum is greater than thepart?
What's the phrase?
The whole is greater than thesum 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 otherways.
So it's the second thing thishour where you've said I could
say that about education andhealthcare more broadly, and
(37:34):
crime and climate, and you nameit, and land and water and
violence and a lot of otherthings.
Quinn Brett (37:41):
Our executive director has a his pie in the
sky is this translational SCIfactory, essentially putting it
all together in one space.
The researchers, all of it Likelet's, let's reinvent this
whole system all of it Likelet's let's reinvent this whole
system.
Jandel Allen-Davis, M.D. (38:02):
Are there intangible things that you
think you received throughworking with the amazing teams
here at Craig that in some wayare part of your why of doing
the work you do now?
Are there things that were kindof that subcellular thing that
drives you and enables you andmotivates you and energizes you,
or energized you to say this isthe direction I'm going,
(38:24):
because you had choices.
You didn't have to get involvedwith 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 meldedwith my personality and being at
Craig was just thinking outsidethe box and ingenuity, and so
being paired with OTs and PTs ofsame like this isn't working
for you.
Let's try this.
Like that ability to beflexible and try new things at
(38:52):
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?
Jason Stoffer (39:02):
Oh well, like going to the malls to learn
escalator skills.
We had to rush and do it veryquickly while nobody was looking
, because the mall cops wouldcome and tell you that you can't
do that, you know, or thatyou're not supposed to do that.
(39:24):
That's why we have elevatorsand yada, yada.
And I remember that thephysical therapists and OTs and
whoever was with us on thosefield trips, we would rush and
do it and like run Like we weredoing something super naughty
which was great.
So now I don't giving thatconfidence of like hey, like
Quinn says, a lot too is liketake up space, man, take up
(39:45):
space.
It's been a rough seven years.
So this idea of like like Idon't want to use the elevator
because I can't find it for one,it's adding 15 more minutes
onto my transit through anairport.
So I'm just going to go up theescalator and you learn to deal
with people that say you can'tdo that.
The other thing too is thisanti-tipper thing that for me,
for Craig Hospital I don't knowif it's a Western or Mountain
(40:07):
West personality of adventure,but getting rid of those
anti-tippers as soon as possiblewas huge, and to see the
limitations in other places thatthey weren't doing that or
instilling that confidence.
You know being dangerous, likeallowing yourself to go and do
dangerous things I mean it's allin like the best way, like
(40:27):
these are the things from Craigthat I think of that I
appreciate the most is not likethe 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 amountof like margin I get back in my
(40:50):
day because I learned so muchindependence there.
Jandel Allen-Davis, M.D. (40:54):
That's beautiful.
And lest our liabilityinsurance carriers are listening
when he says, do somethingdangerous, I understand both
metaphorically, but really it'sone of the things we say is that
the only way to really be ableto live in the full meteor of
your life and your existencepost these injuries is that
(41:16):
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 anescalator anymore without
thinking about you.
You guys, let's get it donebefore the cops come.
I just love it and we're goingto do it.
We're going to do it because wesee on the other side what that
serves.
So I just thank y you all formaking 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 theanswers to these folks that are
asking what's happening inresearch and what are my hopes
for recovery as far as scienceis concerned, if you don't have
those answers, if you couldpoint them to us?
That's why we exist.
It was born out of our own forat least Quinn and I is born out
(42:00):
of our own personal experiencesof what we wanted early on, not
just from Craig, but just thewhole experience.
So if we can be a resource toanybody out there, come join us,
come talk to us.
I hope that we can return thefavor to Craig, you know, by
being a resource for you guys.
So, yeah, we really superappreciate the time, jendell.
(42:22):
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 beautifulways.
Thank you so much.
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