September 16, 2024 • 39 mins
What if a life-altering accident didn’t just change your world but also transformed it into a beacon of hope for others? Join us as we welcome Josh Basile, Esq., a C4-5 quadriplegic and a tireless advocate for individuals with spinal cord injuries, who shares his incredible journey from a paralyzing accident to becoming a pioneering voice in disability law. With the unwavering support of a dedicated mentor and a resilient community, Josh’s early challenges evolved into a life rich with purpose and joy, demonstrating the boundless potential of the human spirit.
This episode shines a light on the critical role of early intervention and mentoring programs that offer emotional and technological support, fostering independence and resilience. Through Josh's story, we champion the continuous potential for growth and contribution, regardless of circumstances, and honor those who relentlessly work towards creating inclusive communities.
Learn more about SPINALpedia and Determined2Heal at the links below:
https://www.determined2heal.org/
https://spinalpedia.com/
https://www.instagram.com/spinalpedia/
https://www.facebook.com/SPINALpedia/
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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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jandel Allen-Davis (00:02):
Welcome to Unstoppable at Craig, where we
pull back the curtain on whatmakes healthy workplace cultures
click and what happens whenpeople 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
(00:26):
, 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 doesn't stifle
(00:52):
innovation.
I remember when I first met thisamazing guy I get to talk with
today at Craig Hospital.
It was before the pandemic, Ithink, and it was on the fourth
floor gym, which means nothingto any of you except that's a
physical therapy gym.
It was in the evening and oneof the traditions and
conventions that's part of ourreally expansive peer mentoring
program is that there is adinner once a month that's
hosted by any one of a number ofgenerous either organizations
(01:14):
or individuals, and Josh wasthere.
But what I was struck byimmediately as we were talking
and I said I need to get to knowyou better just because of the
work you were doing in advocacyfor our folks with one of the
toughest, I think, agendas inAmerica talk.
But it is my absolute pleasureto welcome Josh Basile and have
(01:49):
the opportunity to just get toknow you so welcome.
Josh Basile (01:52):
It's great to be here today and thank you for
having me on the podcast Well itis super cool to do this.
Jandel Allen-Davis (01:57):
You know, we talked to, and I've had the
just the privilege andopportunity to talk to, a lot of
folks in different sectors.
This podcast gives us theopportunity to talk about
building great cultures andwe're going to have, as I think
about it, the chance to talkabout building great cultures at
a policy stage, at a national,at a global stage, in a very
different way, and, heaven knows, there's tons of work to do in
(02:20):
this space.
So I thought just tocontextualize things, since
we're just chatting and no onecan see us, maybe we'd start by
having you, josh, just tell yourstory.
Well, again.
Josh Basile (02:31):
It's great to be here, and my journey into the
spinal cord injury world startedas a teenager.
It was almost 20 years ago.
I was on a summer vacation,finished my freshman year of
college and went to the beachwith my family and friends,
something I look forward toevery year.
And while in the waterwaist-high water I turned my
(02:53):
back to the ocean and a wavejust picked me up, threw me over
my boogie board and I landedheadfirst against the ocean
floor.
And I remember just hearing aloud crack, ocean floor.
And I remember just hearing aloud crack.
And when I became paralyzed, Iwas face down in the water,
unable to move my arms, my legs,unable to scream for help.
(03:13):
And I just remember floating inthe water, just kind of trying
to be as calm as I could, to notpanic, and just hoping my
friends would see me.
I floated there for a while.
I'm happy to report they did,they did, they found me and that
was the start to a new life.
I was medevaced off the beachto a hospital system in a
(03:34):
critical unit and spent the nextfour weeks in the trauma unit
with a ventilator on my neck,unable to breathe on my own,
unable to speak words because ofthe ventilator, and I could
only communicate with my familyby blinking once for yes and
twice for no.
Then I went to spend anothertwo months in an inpatient
(03:56):
hospital and I was sent home andoff to a new life.
That was, yeah, 20 years ago.
It's kind of crazy to thinkabout that.
Jandel Allen-Davis (04:04):
It's interesting you use the phrase
off to a new life.
It certainly was a new life.
That was, yeah, 20 years ago.
It's kind of crazy to thinkabout that.
It's interesting you use thephrase off to a new life, did it
?
It certainly was a new anddifferent life.
You say that with a smile,which is amazing.
I could imagine, though, thatit wasn't with smiles at the
beginning, and what was thattransition like?
Josh Basile (04:17):
if you don't mind, sharing, yeah, there weren't
many smiles in the beginningdays, but I did find my first
smile thanks to community thanksto mentors.
I remember I was in my inpatientroom and this guy, robbie
Beckman, who's a quadriplegicfrom the Maryland area, was
(04:39):
injured like a year before meand he ends up racing in the
room in his power wheelchair andtries to almost attacking my
nurse playfully and I was justlike what is going on?
This is like the strangestscene ever.
I have no idea who this personis.
And he starts kind of yellingat her like smiling, laughing,
(05:00):
and I was just like I have noidea what's going on.
And he looks at me and he'slike son, you got to turn that
frown upside down and it's thefirst time I smiled.
I was like I didn't know youcould be playful with a spinal
cord injury.
I didn't know you could havefun, you could joke.
Since then it's been a I'vejust had countless mentors come
into my life to show me what waspossible and that life could go
(05:23):
on in beautiful ways.
And I know, just laying in thehospital bed during the early
days I would just be on my back,staring at the ceiling,
counting every littleimperfection in the ceiling and
memorizing it.
Because it was just.
Those were my days and I wouldbe dreaming of like what could
my future still hold, and Ididn't know, but as time went on
(05:47):
it ended up becoming a prettybeautiful future.
Jandel Allen-Davis (05:50):
Yeah, and I don't even want to fast forward
through all the chapters, but Iwill say fast forward to today.
You clearly figured it all out.
What was that story?
Josh Basile (06:00):
like being able to follow in others' wheel tracks
you know, being a quadriplegic.
It's going from being on twofeet, running everywhere and
living life with pureindependence.
I had to hit a big reset buttonon life and you know, I did
(06:21):
things a million different waysbefore my injury.
Now I do it one million newways, one million different ways
.
And having to figure that outit could either be done by trial
and error or it could be doneby learning from others,
learning from community members,and you know, truly, the power
of mentoring changed my world,being able to have people come
(06:46):
into my life.
When I was still in the hospitalI got to meet Tim Strachan, who
was a quadriplegic fromMaryland who, 10 years earlier
than me, was at the same beach afew doors down, dove headfirst
into the water and hit a sandbarand shattered his neck, and he
(07:08):
actually had a full ride to playfor Joe Paterno at Penn State.
He was the number one prospectcollege football player
quarterback and he came home,went to community college, went
to undergrad, then went to thelaw school.
He passed the bar, fell in love, got married and had kids.
And you know what, when I heardthat story early on, it just
(07:30):
said Josh, if Tim can do it, youcan do it too.
So it set me on a new path anda new mission.
You know what I can live ameaningful life and make an
impact.
And as I went through schooland really and really, in those
early days of my injury when Idid regain my voice, I found the
(07:51):
power of what your voice andyour words can do to influence
the world around you.
So becoming a communicationmajor myself, then graduating
Magna cum laude from law school,I did it without ever flipping
a page with my fingers.
Jandel Allen-Davis (08:07):
There's a ton of tangents in there.
You're pointing out theimportance of mentoring.
Just to say that there is biglife, like the person who came
in, who's married and has kids,went to law school.
The man who came in and jokedwith the nurse and said turn
that frown upside down and Ilove that your very first smile.
I know it's had a bigger impactthan just you saying that
(08:30):
mentoring is important in words.
You know, when I think aboutSpinalpedia, I'd love for you to
spend some time talking aboutthat.
And then, what was the genesis?
What inspired you to createthis incredible library of all
sorts of videos that are easilyaccessible?
Josh Basile (08:45):
Well, with hitting that big reset button and
entering this new world ofparalysis.
It's just it's crazy to thinkabout every little piece of your
day, every little activity ofdaily living.
You have to figure out how todo it again.
And the way that I figured outhow to do it a lot because of my
(09:07):
paralysis and high levelinjuries I would have to rely a
lot on technology and a lot oncaregivers.
So I became very dependent ontechnology or adaptive devices
or family friends, caregivers totackle life.
But I learned very quickly thatthrough all the technology and
(09:29):
people in my life I becameindependent because as long as I
could have the say, physicallyI was paralyzed, but mentally I
was still there, I was stillJosh and focusing on what I
could control that perspective.
It really transformed my abilityto kind of tackle my day with
(09:51):
purpose.
But it really took mentors togive me the ability how to
figure things out so that Ididn't have to do it five or 10
different ways and fail.
I could be like, all right,they did it.
Well, that way, I'm going totry it.
Did that work for me?
It did.
I'm going to do it that way, oryou know what it didn't, but
I'm work for me.
It did, I'm gonna do it thatway, or you know what it?
didn't, but I'm gonna tweak itand I'm gonna figure out how to
how to do it in my own way orwithin my own environment.
(10:14):
But so much of that mentoringthat I found it just like every
single time that I had someonenew come into my life, it just
it rocked my world.
It got me in a differentdirection, it got me on a
straighter path to figuring thisall out.
And it's crazy, but after 10months I compiled it felt like
(10:35):
volumes of information that Iwish I could have slowly rolled
out to myself right after myinjury.
So I didn't have to make thebig mistakes.
I didn't have to.
I didn't have to strugglethrough different parts of of
the mental game of an injury oror how to gain access to
vocational supports orgovernment programs.
(10:56):
And because the quicker you canget in the in the right
direction on a different pathwith a with a high level spinal
cord injury or with any reallyspinal cord injury, it's a whole
new world of possibilities andI know each and every time I met
those special people it's justlike I kept on saying I wish I
(11:19):
met you sooner.
But I would always come to eachnew encounter with a sense of
gratitude.
First of all because it's justlike you know.
You don't know what you don'tknow and if people are willing
to give and to help you and ifyou're willing to let them in.
That's sometimes the hardestpart of paralysis in the early
(11:41):
days.
You choose to believe like thisis going to be so temporary,
I'm going to beat this, and it'sgood to have that mentality.
It's good to have hope.
Any dose of hope is good inlife and in general.
I'm not saying to give up thathope early on.
What I'm saying is, like sooften, there's people within the
(12:04):
spinal cord community that Iend up reaching out to and
mentoring I'll go a little bitmore into that but like they're
not ready to have a mentor,there's people within the spinal
cord community that I end upreaching out to and mentoring
I'll go a little bit more intothat but they're not ready to
have a mentor.
They're still coping, they'restill in the grief stage or
they're just not ready for that.
But luckily I had certainmentors in my life to show me
(12:24):
the value of it.
Luckily I had certain mentorsin my life to show me the value
of it.
And the next thing I knew, themore and more people I let into
my life, it set me off in areally, really beautiful journey
.
And so about 10 months after myinjury, I had friends and
(12:45):
family come to me and said Josh,what do you want to do with
your next chapter?
And we decided we wanted tostart a foundation.
So we started the Determined toHeal Foundation to help
simplify the transition intolife with paralysis for newly
injured families.
And at first I kind of justshared my story and almost
writing like a book, 130 pagesof different topics that we
(13:09):
ended up putting on the internet.
But I quickly learned that myunique level of paralysis was
very specific to me.
One level above my injury, Iwould likely be on a ventilator.
One level below, I'd start tohave a tricep one level of that
uh, fingers, um and level, likeit's just every level of the
(13:30):
spinal cord injury branches outinto a whole new world.
So then I started saying, allright, what can we do to bring
mentors to people across theworld?
And that's when Spinalpedia wasborn.
It's a video mentoring platformwhere we take videos from the
internet and break them down,all by functionality, so that
you put your exact movement inand the next you know, you have
(13:53):
somebody within the processcommunity to show you different
activities of daily living,different parts of life you name
it.
And now, in 2024, since 2007,we are now over 10,000 community
members and over 33,000 videosbroken down by functionality,
(14:16):
and it's just one of thosethings.
It started off as my baby andit's now a teenager and it's
grown up in a beautiful way andI'm very, very proud of what
it's become.
Jandel Allen-Davis (14:28):
It certainly takes a village or entourage,
however you want to put it.
I want to switch gears just abit, because you did go to law
school Holy moly, I love it andnever flipped a page, which is
scary.
But there you go in terms ofthe ability to do what you got
done through any one of a numberof both technologies and, as
(14:49):
you said, people to help.
But you've, I think, committedyour life to a particularly
important aspect of law, and ithas to do with disability law,
which is what I remember ustalking about in that gym that
day, which was one of the thingsthat I said.
Oh, because I'd done governmentrelations at Kaiser Permanente
before coming to Craig, andobviously we have a role that we
play in local and nationalpolicy.
(15:10):
But I wanted to give you a justjust talk about how that whole
journey started and then we canget into some specifics.
Josh Basile (15:18):
You know, when I learned that Tim Strachan became
an attorney, it kind of taughtme that you know the power of
your voice, the power ofadvocacy.
You can really change the worldwith your words, and if you
have a unique set of skills,more so than others, you really
can gain a superpower of sortsto change the world around you.
(15:40):
So I started getting as mucheducation and confidence as I
possibly could around advocacyand I turned it almost into a
sport, into a game.
The more I practiced at it, themore I played at it, the more I
put myself into the game, thebetter I got, and learning
everything I could around mealso helped.
(16:00):
Being able to live in theWashington DC area contributed
to allowing me to be, you know,rolled down the streets of
Capitol Hill.
I learned that you know.
When I wheeled down the streetsin DC area contributed to
allowing me to be, you know,roll down the streets of Capitol
Hill.
I learned that, you know, whenI wheel down the streets in DC I
get to turn some heads, but ifI wheel down the street with you
know, two or three or fivepeople in chairs a lot more
(16:21):
people Turn a lot of heads yeahyou create a small army and
people start listening, Peoplestart healing and they realize
that this is a real story, thisis real life, this is real
impact and letting them be apart of your journey and that
consistency within advocacy Ilearned it's.
(16:42):
Change does not happen fastanywhere in the world,
especially within the USpolitical system, but a
consistent, steady beat, apersistent beat of letting the
world know what needs to change,why it needs to change, and
continuing to working with thepowers to be to make it happen.
(17:03):
It's just, it's amazing whathappens when you keep beating
that drum over time.
There's so many things thatneed fixing.
Unfortunately, so many peoplewithin spinal cord injury rely
on Medicaid, and when Medicaidwas first formed in the 1970s,
(17:25):
it was made to help get poorpeople off the ground and to get
them back up and to give them asafety net of sort in place so
that they just didn't crumble.
They had something to supportthem and they quickly joined in
the elderly, children andpersons with disabilities.
(17:48):
But they left that componentthat you had to be poor, and
that's been one of the hardestpoints of having a high-level
injury is the only place youreally can turn for long-term
care, which is that nursing care, that attending care in the
community, is through Medicaid,and people with disabilities,
(18:10):
especially with spinal cordinjuries at high levels, will
always choose to survive beforethey thrive.
Survival is attached toMedicaid if you want to be in
the community and out of aninstitution like a nursing home.
So basically, people withdisabilities, especially spinal
cord injuries, were not goingback to work.
And in the 1990s they realizedthat people weren't going back
(18:35):
to work because if they made anymoney they'd lose their
caregiving.
The federal government, Congress, decided to pass two pieces of
legislation the 1997 BalancedBudget Act and the 1999 Ticket
to Work, Work IncentiveImprovement Act and both of
these legislative authoritiesgranted states to create what's
known as Medicaid buyingprograms for workers with
(18:57):
disabilities and allowed statesto design people have higher
income, higher asset limits, beable to work to a certain point
and not be kicked out of theirMedicaid benefits.
And this was a beautifulturning point.
In the beginning days they madevery conservative rules around
(19:18):
these programs and as time wenton, state by state by state,
we're finding that a lot ofthese rules are being relaxed to
allow people to make more money, to save more money, to be able
to get married without apenalty to be able to work past
the age of 65.
So right now that's one of mybiggest advocacy pieces in my
(19:40):
life is transforming Medicaidbuying programs across the
country 46 out of 50 states haveMedicaid-buying programs.
Jandel Allen-Davis (19:49):
Oh, that's fabulous.
Josh Basile (19:50):
So Florida, alabama , louisiana and Tennessee are
currently the only states thatdo not have it, and the District
of Columbia, but withinMaryland, after five years of
advocacy I started with GovernorHogan, who's a former governor
I was actually able to convincewith Governor Hogan, who's a
former governor, I was actuallyable to convince him and his
(20:10):
administration to remove theincome limits and to allow once
somebody's in the program tosave for the future based on the
amount of money they make in ayear.
So as of January 1, 2024, thisyear, maryland workers with
disabilities in the MedicaidBuy-In Program are able to work
without any barriers on income,which is huge.
Jandel Allen-Davis (20:30):
That's amazing, you know, it's almost.
I guess I'm going to try not toget on a soapbox, but it's
unbelievable to think about whata huge inequity that is.
I can save for the future asmuch as I want and continue to
work as a person not living witha disability, I mean it just so
marginalizes and so calls outdifference where there shouldn't
(20:51):
be.
So what you're doing, you and athrong of others rolling to the
capitals all over this country,is welcome, and you know, I
think there's also an all boatsrise with the tide playing out
here too, because the same thinghappens for able-bodied, poor
people who are trapped inpoverty because of some real
(21:13):
arcane regulations and rulesthat need to change.
Josh Basile (21:17):
So thank you, and the only way they're going to
change is to is to speak up.
Let your voices be heard, letyour wheels be heard.
Just you, your wheels, be heard.
You got to be heard.
The only way to really changethe world is to immerse yourself
within it and to let the worldaround you know that you have
value, that you have purpose andthat your future is up to you.
(21:42):
I learned early on in my injurythat nobody's going to fight
harder for me than I'm going tofight for myself.
And when I learned that I myinjury, that nobody's going to
fight harder for me than I'mgoing to fight for myself.
And when I learned that Ibecame an advocate for life and
I need to be able to bringtogether other beautiful people
to fight alongside me so that wecan amplify our voices and
stories and to show thatsystematic problems need to be
(22:05):
fixed, because it's just not oneperson falling through the
cracks, it's many.
Jandel Allen-Davis (22:10):
What are some of the other big cultural
issues that do need to changethrough yours and others'
leadership?
And not just those who arewheelchair users or who are
spinal cord or brain injury orany other disability, but those
of us who do use these twothings to walk around on and can
(22:31):
jump out of bed.
What's some of the big thingswe have to struggle with?
Josh Basile (22:36):
Yeah.
So the patience and persistence, it's key.
Like you can't win every daywithin the advocacy game, it
just doesn't work like that.
Small incremental wins and manylosses together both of those
together is forward moving.
(22:56):
It's like even this year,through the Maryland legislature
, I brought forward a bill sothat people age 65 and above in
Maryland could be able to workwithout losing all their
Medicaid, which currently youturn 65, it's time to retire,
which is not fair.
There's a marriage penalty, soif I were to get married, my
(23:18):
premium per month would go from$50 to over $500, $700 a month,
which disincentivizes marriagewhich I would love to marry, the
love of my life my fiance andthe Department of Health in my
state was able to kill the bill,but we were able to get a
survey put forward so that overthe next year they could study
(23:41):
it.
We got the media behind us and Ifull heartedly believe in 2025,
we will get the bill passed.
We didn't get it done this year, but we were allowed enough to
get the powers to be torecognize that they needed to do
something, to get the powers tobe to recognize that they
needed to do something.
There's a big issue right nowwith access to care and good
(24:03):
care and making sure that thosethat are attendants and nurses
want to enter this field and getpaid a fair wage, and that's a
struggle.
I see quadriplegics like myselfand my level of injury getting
two to three hours in themorning and two to three hours
in the evening.
That's tough being able to havethat number of hours for care.
(24:24):
When you're paralyzed below theshoulders, it's almost torturous
to not have the supports neededto be able to tackle your day
and live your best life.
There's so many things that weneed to do within transportation
to be able to tackle your dayand live your best life Like
there's so many things that weneed to do within transportation
to be able to give access tomore people to the world around
them, and you know we live in aworld right now where the
(24:47):
Internet is.
You know most people nowrealize that they have to make
their physical storefrontaccessible to people that are
going to be customers, but wenow live in this huge digital
world where our websites need tobe accessible.
The different products and theway that we communicate with the
world online needs to beaccessible, and I've been
(25:10):
extremely passionate about that.
Jandel Allen-Davis (25:13):
There's no shortage of work for us to do.
I mean the very and it's all.
As I look at it, it just it's.
I gotta tell you it's angeringand I'm going to try not to get
emotional, but you know, whenyou're talking about being able
to marry, to marry, you know oneof the things that we hold so
at least politicians dosacrosanct and wonderful being
(25:35):
able to get around where publictransportation actually works,
let alone private, and isaffordable.
Employment, which you knowlessening, to use a phrase, the
burden of government in general,just to have full access to
employment.
And, in particular, one of thethings I don't know, that I've
said this to you but your storycertainly once again reinforces,
is that the people many, most,in fact I dare say all people
(25:59):
living with spinal cord injuries, absent congenital conditions,
woke up with one reality andwent to bed with a very
different one.
It's not as if they lefteverything that they are and
were and their potential on thatocean floor or on that, you
know, the side of that road in acar accident, or at the bottom
of that building from a fall, orthose stairs from a fall, and
(26:21):
yet we throw and we waste somuch realized, actualized and
potential this way, home health,and then accessibility through
as we become a more digitalworld.
Those are just five of a hostof things that will keep a ton
of us busy.
It's one of the things just alittle sharing is, I've thought,
(26:44):
why did the heavens put anOBGYN in the place of service at
a national neurorehabilitationhospital?
And I knew what it was.
It was to use my voice onbehalf of the vulnerable, and I
call myself a warrior for thevulnerable.
So together we're stronger.
I rarely say fatigue or tiredbecause there's lots of work
(27:05):
left to do.
But what would you, from your38 year vistas, say to we old
folks, because and I think it'simportant to get that and by old
folks, old leaders, old peoplewho are going to be in the fight
till the fight ends?
I say that because maybethere'll be a day that old Josh
will need to hear that fromyoung Josh.
(27:27):
So what would you say to thoseof us who you know these fights
get all this many years of doingthis and at my age given
therefore, you know, know, whenI went into medicine, what it
looked like, let alone the veryfew leaders of color and
certainly disabled leaders thatare out there who are the sort
(27:47):
of the, the pioneers in someways I would just say the
importance of of purpose, theimportance of knowing that when
you get to wake up, you choosewhat you want to do next.
Josh Basile (28:02):
So if you're tired of beating the same drum over
and over again, there's so muchmore, there's so many new drum
beats that you can create indifferent directions in life to
truly create meaningful changeand to have that influence
around you.
Like there's not enough hoursin the day for me to do what I
(28:26):
want to do now, but I know if Ineeded to go in a different
direction, I could go ininstantly and do something new
and still be able to make bigimpact in that area.
And it kind of makes me excitedto know.
You know, like my spinal cordinjury, you know it immediately
(28:46):
had me at a reset button, but italso started a new chapter.
And you know, after you know,graduating from law school it
was a new chapter.
You know, after you know,graduating from law school, it
was a new chapter.
After falling in love andfinding the love of my life,
katie started a new chapter.
I got to immediately become afather to her beautiful
(29:07):
three-year-old daughter and thenext thing you know, katie
underwent in vitro fertilizationand I became a dad from the
beginning, and that was a newchapter.
It's just.
Each and every chapter of ourlives can begin something new,
but it's up to you to be thatstar, that main character in it,
(29:29):
and what you do next.
So, whatever if you're 38, orif you're 70, the truth is that
each and every chapter thatcomes next, you are the actor in
it to decide what happens next.
With that next word, the nextsentence, that next page, we are
(29:52):
the narrator of our journey.
Jandel Allen-Davis (29:55):
This hour, there's been just so many gems
that you've dropped, not just inservice to and in support of
persons living with spinal cordinjury, but those of us who
aren't.
And one thing I suspect that,had that wave not changed, your
trajectory would have been partof your future, would have been
this desire, this drive, thisneed, this responsibility to
(30:19):
mentor, and I know that you'relike you said there's always
another cool thing you're doingand you are doing something
interesting in the mentoringspace.
Josh Basile (30:27):
We're creating a national peer mentoring program
to get to families as early onas possible within the critical
unit, within the inpatientsetting, and making sure that
you know just if the personthat's injured needs somebody,
we're there for them the secondthat they're ready.
Oftentimes you need to mentorthe family members as quickly as
(30:51):
possible to get them so thatthey're ready to make that
transition from hospital to home, which is very scary.
I remember coming home from theinpatient hospital and I was
there within the hospitalsystems for almost two and a
half three months and when Icame home and they wheeled me
(31:13):
into my garage I saw an old pairof cleats and a tennis racket
and that's when it hit me.
The life was going to bedifferent from that moment on.
I really did not get it as muchwhen I was still in the
hospital.
But creating an internationalpeer mentoring program, we're
going to try to get to familiesearly on, to every hospital, and
(31:35):
also to get technology tofamilies early on to every
hospital and to get also to gettechnology.
What?
What if we could get a piece oftechnology into someone's mouth
immediately after their injury,to actually give them
independence back and to givethem the ability to control
their environment, tocommunicate with the world
around them, to be able to, tonot just be in that hospital bed
staring up at the ceiling,blinking once for yes and twice
(31:58):
for no?
What if, from day one, thefirst week, we can give people
the ability to not go down aroad of depression, which every
single person with a spinal cordinjury gets a dose of
depression Like.
It's hard not to.
It's the reality of the day.
But how can we give them thetools they need, the mentors
(32:20):
they need to have a betterfighting chance, to live their
best life and to not be alone?
That's something I would loveto try my hardest to give to the
world and something that, atleast in this chapter, I'm going
to be fighting for.
You know there's just so manythings that we're all doing that
(32:40):
are contributing, and CraigHospital.
You know I came out therebecause I brought five families
to go adaptive skiing fromaround the country and we came
to the Denver area and it's justlike it was a no brainer.
I had to get out to Craig.
We've heard so much of themagic that happens and the
(33:01):
families that the lives thatyou've changed, and being within
your walls it made so muchsense.
It was such an incredible placefor healing to occur and for
people to come together andlearn and I put on a support
group when I was there and therewas like 60 families, like it
(33:21):
was just.
It was so beautiful to have atouchpoint early on in those
families' journey and tohopefully say like I had a part
in getting them in a newdirection.
Craig helped have a part ingetting them in a new direction.
Craig helped have a part ingetting them in a new direction.
So it's just coming together,being the matchmakers and
(33:42):
actually doing somethingtogether.
It's like I'm excited for us todo a lot together.
Jandel Allen-Davis (33:49):
Well, I think that our futures are
bright in that respect and, aswe end, I just wanted to say to
you that, as a person who's donethis journey through different
you know sort of a differentlens, a different set of, I'd
say, absolute challenges from asocial, a political and economic
(34:10):
perspective, despite, or maybebecause of my comment about
fatigue that just hits you everynow and again, keep going,
because I was 38 at one point inmy life and at this ripe and
still ripening age of 66, Istill feel like there's tons
more to do.
So then, when we hit, when youhit 66, you'll listen to me
(34:32):
saying this to you because I'llbe a lot older and I hope I'm
still saying things to you tosay keep going.
We got lots more rolling to do.
Josh, I want to thank you.
This has been just an honor, aprivilege and you know it's
funny how life works meeting youin a gym on the fourth floor at
Craig and a room full offamilies who come together
monthly to share a meal andcatch up with friends and work
(34:54):
with both our formal and lessformal peer mentors who are
there.
Who would have ever thoughtthere'd come a day that we'd be
hanging out in Washington DC,your home, where you're doing
fabulous work, and having achance just to share some
thoughts, and thank you forbeing here with us today.
Josh Basile (35:11):
It was a pleasure to be here and you know I'm a
big believer that beautifulpeople gravitate towards each
other, so we're doing good inthe world and that good attracts
each other.
Jandel Allen-Davis (35:27):
Wow, what an honor and privilege it was to
spend an hour with Josh Basile,an amazing disability rights
advocate, and I loved the linethat he said about being the
hero in your own story anddidn't say it in a way that look
at me being the hero in my ownstory, but recognizing his
(35:47):
personal power and agency totake what he called every
chapter and actually leveragethe opportunity for new
challenges and fun.
And he's managed to do thatbeautifully, while never,
interestingly, giving up thepossibility of hope for a cure,
(36:08):
which is one of the componentsof something that we haven't
talked about on this podcast,namely the Craig recipe, and
that is what we think is thatrecipe that makes Craig Hospital
so special.
What he has learned over timein terms of the implications of
each level of spinal injury,opening a new world that he's
(36:29):
had to navigate transportation,and does so beautifully.
Employment he's had to stitchtogether and has a wonderful
caregiver.
But the home health situationthat is quite a challenge for
those living with spinal cordand brain injuries or any other
kind of disability.
And certainly how he leveragesthe accessibility that already
(36:54):
lives in technology and willonly continue to flourish over
time because of the genius of somany people working in this
space.
And then, if there's somethingthat just really frosts me and I
will say it that way are theways that some of our public
programs work to keep peoplelocked into certain levels of
(37:15):
income and also then make somethings as basic and as part of
life, as marriage literally andpardon the pun inaccessible to
parts of the population orsomething that we really do need
to address at some point.
But what I'd say about Josh, andin this wonderful interview
that just was the highlight ofit for me, is that his eternal
(37:39):
optimism in the face of allsorts of challenges.
He is a beautiful, wonderfulyoung man and man.
Are we both blessed as a worldand a country to have someone
who's done the kind of work,alongside all other sorts of
heroes in their own story toremove barriers, to break
through barriers and to createnew possibilities for people
(38:01):
living with disabilities?
Interestingly, when I thinkabout what we do at Craig, it's
a perfect sort of bow on thiswonderful interview that we had,
or opportunity for a discussion, and that is because that's
what we do at Craig and that'swhat this wonderful culture that
is buttressed by a ton ofcourage, a ton of optimism and a
(38:21):
lot of systemic sorts ofstructures that we've built to
absolutely fuel the ways that webreak through barriers to
create opportunities forindependence, at the same time
recognizing that the work isnever done.
So thank you again for joiningus at Unstoppable at Craig, and
I look forward to the nextconversation we'll have as we
continue to explore what makesfor great cultures and, more
(38:44):
importantly, who are the peoplewho are part of building those
great cultures.
Welcome to Unstoppable at Craig, where we
pull back the curtain on whatmakes healthy workplace cultures
click and what happens whenpeople 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
(00:26):
, 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 doesn't stifle
(00:52):
innovation.
I remember when I first met thisamazing guy I get to talk with
today at Craig Hospital.
It was before the pandemic, Ithink, and it was on the fourth
floor gym, which means nothingto any of you except that's a
physical therapy gym.
It was in the evening and oneof the traditions and
conventions that's part of ourreally expansive peer mentoring
program is that there is adinner once a month that's
hosted by any one of a number ofgenerous either organizations
(01:14):
or individuals, and Josh wasthere.
But what I was struck byimmediately as we were talking
and I said I need to get to knowyou better just because of the
work you were doing in advocacyfor our folks with one of the
toughest, I think, agendas inAmerica talk.
But it is my absolute pleasureto welcome Josh Basile and have
(01:49):
the opportunity to just get toknow you so welcome.
Josh Basile (01:52):
It's great to be here today and thank you for
having me on the podcast Well itis super cool to do this.
Jandel Allen-Davis (01:57):
You know, we talked to, and I've had the
just the privilege andopportunity to talk to, a lot of
folks in different sectors.
This podcast gives us theopportunity to talk about
building great cultures andwe're going to have, as I think
about it, the chance to talkabout building great cultures at
a policy stage, at a national,at a global stage, in a very
different way, and, heaven knows, there's tons of work to do in
(02:20):
this space.
So I thought just tocontextualize things, since
we're just chatting and no onecan see us, maybe we'd start by
having you, josh, just tell yourstory.
Well, again.
Josh Basile (02:31):
It's great to be here, and my journey into the
spinal cord injury world startedas a teenager.
It was almost 20 years ago.
I was on a summer vacation,finished my freshman year of
college and went to the beachwith my family and friends,
something I look forward toevery year.
And while in the waterwaist-high water I turned my
(02:53):
back to the ocean and a wavejust picked me up, threw me over
my boogie board and I landedheadfirst against the ocean
floor.
And I remember just hearing aloud crack, ocean floor.
And I remember just hearing aloud crack.
And when I became paralyzed, Iwas face down in the water,
unable to move my arms, my legs,unable to scream for help.
(03:13):
And I just remember floating inthe water, just kind of trying
to be as calm as I could, to notpanic, and just hoping my
friends would see me.
I floated there for a while.
I'm happy to report they did,they did, they found me and that
was the start to a new life.
I was medevaced off the beachto a hospital system in a
(03:34):
critical unit and spent the nextfour weeks in the trauma unit
with a ventilator on my neck,unable to breathe on my own,
unable to speak words because ofthe ventilator, and I could
only communicate with my familyby blinking once for yes and
twice for no.
Then I went to spend anothertwo months in an inpatient
(03:56):
hospital and I was sent home andoff to a new life.
That was, yeah, 20 years ago.
It's kind of crazy to thinkabout that.
Jandel Allen-Davis (04:04):
It's interesting you use the phrase
off to a new life.
It certainly was a new life.
That was, yeah, 20 years ago.
It's kind of crazy to thinkabout that.
It's interesting you use thephrase off to a new life, did it
?
It certainly was a new anddifferent life.
You say that with a smile,which is amazing.
I could imagine, though, thatit wasn't with smiles at the
beginning, and what was thattransition like?
Josh Basile (04:17):
if you don't mind, sharing, yeah, there weren't
many smiles in the beginningdays, but I did find my first
smile thanks to community thanksto mentors.
I remember I was in my inpatientroom and this guy, robbie
Beckman, who's a quadriplegicfrom the Maryland area, was
(04:39):
injured like a year before meand he ends up racing in the
room in his power wheelchair andtries to almost attacking my
nurse playfully and I was justlike what is going on?
This is like the strangestscene ever.
I have no idea who this personis.
And he starts kind of yellingat her like smiling, laughing,
(05:00):
and I was just like I have noidea what's going on.
And he looks at me and he'slike son, you got to turn that
frown upside down and it's thefirst time I smiled.
I was like I didn't know youcould be playful with a spinal
cord injury.
I didn't know you could havefun, you could joke.
Since then it's been a I'vejust had countless mentors come
into my life to show me what waspossible and that life could go
(05:23):
on in beautiful ways.
And I know, just laying in thehospital bed during the early
days I would just be on my back,staring at the ceiling,
counting every littleimperfection in the ceiling and
memorizing it.
Because it was just.
Those were my days and I wouldbe dreaming of like what could
my future still hold, and Ididn't know, but as time went on
(05:47):
it ended up becoming a prettybeautiful future.
Jandel Allen-Davis (05:50):
Yeah, and I don't even want to fast forward
through all the chapters, but Iwill say fast forward to today.
You clearly figured it all out.
What was that story?
Josh Basile (06:00):
like being able to follow in others' wheel tracks
you know, being a quadriplegic.
It's going from being on twofeet, running everywhere and
living life with pureindependence.
I had to hit a big reset buttonon life and you know, I did
(06:21):
things a million different waysbefore my injury.
Now I do it one million newways, one million different ways
.
And having to figure that outit could either be done by trial
and error or it could be doneby learning from others,
learning from community members,and you know, truly, the power
of mentoring changed my world,being able to have people come
(06:46):
into my life.
When I was still in the hospitalI got to meet Tim Strachan, who
was a quadriplegic fromMaryland who, 10 years earlier
than me, was at the same beach afew doors down, dove headfirst
into the water and hit a sandbarand shattered his neck, and he
(07:08):
actually had a full ride to playfor Joe Paterno at Penn State.
He was the number one prospectcollege football player
quarterback and he came home,went to community college, went
to undergrad, then went to thelaw school.
He passed the bar, fell in love, got married and had kids.
And you know what, when I heardthat story early on, it just
(07:30):
said Josh, if Tim can do it, youcan do it too.
So it set me on a new path anda new mission.
You know what I can live ameaningful life and make an
impact.
And as I went through schooland really and really, in those
early days of my injury when Idid regain my voice, I found the
(07:51):
power of what your voice andyour words can do to influence
the world around you.
So becoming a communicationmajor myself, then graduating
Magna cum laude from law school,I did it without ever flipping
a page with my fingers.
Jandel Allen-Davis (08:07):
There's a ton of tangents in there.
You're pointing out theimportance of mentoring.
Just to say that there is biglife, like the person who came
in, who's married and has kids,went to law school.
The man who came in and jokedwith the nurse and said turn
that frown upside down and Ilove that your very first smile.
I know it's had a bigger impactthan just you saying that
(08:30):
mentoring is important in words.
You know, when I think aboutSpinalpedia, I'd love for you to
spend some time talking aboutthat.
And then, what was the genesis?
What inspired you to createthis incredible library of all
sorts of videos that are easilyaccessible?
Josh Basile (08:45):
Well, with hitting that big reset button and
entering this new world ofparalysis.
It's just it's crazy to thinkabout every little piece of your
day, every little activity ofdaily living.
You have to figure out how todo it again.
And the way that I figured outhow to do it a lot because of my
(09:07):
paralysis and high levelinjuries I would have to rely a
lot on technology and a lot oncaregivers.
So I became very dependent ontechnology or adaptive devices
or family friends, caregivers totackle life.
But I learned very quickly thatthrough all the technology and
(09:29):
people in my life I becameindependent because as long as I
could have the say, physicallyI was paralyzed, but mentally I
was still there, I was stillJosh and focusing on what I
could control that perspective.
It really transformed my abilityto kind of tackle my day with
(09:51):
purpose.
But it really took mentors togive me the ability how to
figure things out so that Ididn't have to do it five or 10
different ways and fail.
I could be like, all right,they did it.
Well, that way, I'm going totry it.
Did that work for me?
It did.
I'm going to do it that way, oryou know what it didn't, but
I'm work for me.
It did, I'm gonna do it thatway, or you know what it?
didn't, but I'm gonna tweak itand I'm gonna figure out how to
how to do it in my own way orwithin my own environment.
(10:14):
But so much of that mentoringthat I found it just like every
single time that I had someonenew come into my life, it just
it rocked my world.
It got me in a differentdirection, it got me on a
straighter path to figuring thisall out.
And it's crazy, but after 10months I compiled it felt like
(10:35):
volumes of information that Iwish I could have slowly rolled
out to myself right after myinjury.
So I didn't have to make thebig mistakes.
I didn't have to.
I didn't have to strugglethrough different parts of of
the mental game of an injury oror how to gain access to
vocational supports orgovernment programs.
(10:56):
And because the quicker you canget in the in the right
direction on a different pathwith a with a high level spinal
cord injury or with any reallyspinal cord injury, it's a whole
new world of possibilities andI know each and every time I met
those special people it's justlike I kept on saying I wish I
(11:19):
met you sooner.
But I would always come to eachnew encounter with a sense of
gratitude.
First of all because it's justlike you know.
You don't know what you don'tknow and if people are willing
to give and to help you and ifyou're willing to let them in.
That's sometimes the hardestpart of paralysis in the early
(11:41):
days.
You choose to believe like thisis going to be so temporary,
I'm going to beat this, and it'sgood to have that mentality.
It's good to have hope.
Any dose of hope is good inlife and in general.
I'm not saying to give up thathope early on.
What I'm saying is, like sooften, there's people within the
(12:04):
spinal cord community that Iend up reaching out to and
mentoring I'll go a little bitmore into that but like they're
not ready to have a mentor,there's people within the spinal
cord community that I end upreaching out to and mentoring
I'll go a little bit more intothat but they're not ready to
have a mentor.
They're still coping, they'restill in the grief stage or
they're just not ready for that.
But luckily I had certainmentors in my life to show me
(12:24):
the value of it.
Luckily I had certain mentorsin my life to show me the value
of it.
And the next thing I knew, themore and more people I let into
my life, it set me off in areally, really beautiful journey
.
And so about 10 months after myinjury, I had friends and
(12:45):
family come to me and said Josh,what do you want to do with
your next chapter?
And we decided we wanted tostart a foundation.
So we started the Determined toHeal Foundation to help
simplify the transition intolife with paralysis for newly
injured families.
And at first I kind of justshared my story and almost
writing like a book, 130 pagesof different topics that we
(13:09):
ended up putting on the internet.
But I quickly learned that myunique level of paralysis was
very specific to me.
One level above my injury, Iwould likely be on a ventilator.
One level below, I'd start tohave a tricep one level of that
uh, fingers, um and level, likeit's just every level of the
(13:30):
spinal cord injury branches outinto a whole new world.
So then I started saying, allright, what can we do to bring
mentors to people across theworld?
And that's when Spinalpedia wasborn.
It's a video mentoring platformwhere we take videos from the
internet and break them down,all by functionality, so that
you put your exact movement inand the next you know, you have
(13:53):
somebody within the processcommunity to show you different
activities of daily living,different parts of life you name
it.
And now, in 2024, since 2007,we are now over 10,000 community
members and over 33,000 videosbroken down by functionality,
(14:16):
and it's just one of thosethings.
It started off as my baby andit's now a teenager and it's
grown up in a beautiful way andI'm very, very proud of what
it's become.
Jandel Allen-Davis (14:28):
It certainly takes a village or entourage,
however you want to put it.
I want to switch gears just abit, because you did go to law
school Holy moly, I love it andnever flipped a page, which is
scary.
But there you go in terms ofthe ability to do what you got
done through any one of a numberof both technologies and, as
(14:49):
you said, people to help.
But you've, I think, committedyour life to a particularly
important aspect of law, and ithas to do with disability law,
which is what I remember ustalking about in that gym that
day, which was one of the thingsthat I said.
Oh, because I'd done governmentrelations at Kaiser Permanente
before coming to Craig, andobviously we have a role that we
play in local and nationalpolicy.
(15:10):
But I wanted to give you a justjust talk about how that whole
journey started and then we canget into some specifics.
Josh Basile (15:18):
You know, when I learned that Tim Strachan became
an attorney, it kind of taughtme that you know the power of
your voice, the power ofadvocacy.
You can really change the worldwith your words, and if you
have a unique set of skills,more so than others, you really
can gain a superpower of sortsto change the world around you.
(15:40):
So I started getting as mucheducation and confidence as I
possibly could around advocacyand I turned it almost into a
sport, into a game.
The more I practiced at it, themore I played at it, the more I
put myself into the game, thebetter I got, and learning
everything I could around mealso helped.
(16:00):
Being able to live in theWashington DC area contributed
to allowing me to be, you know,rolled down the streets of
Capitol Hill.
I learned that you know.
When I wheeled down the streetsin DC area contributed to
allowing me to be, you know,roll down the streets of Capitol
Hill.
I learned that, you know, whenI wheel down the streets in DC I
get to turn some heads, but ifI wheel down the street with you
know, two or three or fivepeople in chairs a lot more
(16:21):
people Turn a lot of heads yeahyou create a small army and
people start listening, Peoplestart healing and they realize
that this is a real story, thisis real life, this is real
impact and letting them be apart of your journey and that
consistency within advocacy Ilearned it's.
(16:42):
Change does not happen fastanywhere in the world,
especially within the USpolitical system, but a
consistent, steady beat, apersistent beat of letting the
world know what needs to change,why it needs to change, and
continuing to working with thepowers to be to make it happen.
(17:03):
It's just, it's amazing whathappens when you keep beating
that drum over time.
There's so many things thatneed fixing.
Unfortunately, so many peoplewithin spinal cord injury rely
on Medicaid, and when Medicaidwas first formed in the 1970s,
(17:25):
it was made to help get poorpeople off the ground and to get
them back up and to give them asafety net of sort in place so
that they just didn't crumble.
They had something to supportthem and they quickly joined in
the elderly, children andpersons with disabilities.
(17:48):
But they left that componentthat you had to be poor, and
that's been one of the hardestpoints of having a high-level
injury is the only place youreally can turn for long-term
care, which is that nursing care, that attending care in the
community, is through Medicaid,and people with disabilities,
(18:10):
especially with spinal cordinjuries at high levels, will
always choose to survive beforethey thrive.
Survival is attached toMedicaid if you want to be in
the community and out of aninstitution like a nursing home.
So basically, people withdisabilities, especially spinal
cord injuries, were not goingback to work.
And in the 1990s they realizedthat people weren't going back
(18:35):
to work because if they made anymoney they'd lose their
caregiving.
The federal government, Congress, decided to pass two pieces of
legislation the 1997 BalancedBudget Act and the 1999 Ticket
to Work, Work IncentiveImprovement Act and both of
these legislative authoritiesgranted states to create what's
known as Medicaid buyingprograms for workers with
(18:57):
disabilities and allowed statesto design people have higher
income, higher asset limits, beable to work to a certain point
and not be kicked out of theirMedicaid benefits.
And this was a beautifulturning point.
In the beginning days they madevery conservative rules around
(19:18):
these programs and as time wenton, state by state by state,
we're finding that a lot ofthese rules are being relaxed to
allow people to make more money, to save more money, to be able
to get married without apenalty to be able to work past
the age of 65.
So right now that's one of mybiggest advocacy pieces in my
(19:40):
life is transforming Medicaidbuying programs across the
country 46 out of 50 states haveMedicaid-buying programs.
Jandel Allen-Davis (19:49):
Oh, that's fabulous.
Josh Basile (19:50):
So Florida, alabama , louisiana and Tennessee are
currently the only states thatdo not have it, and the District
of Columbia, but withinMaryland, after five years of
advocacy I started with GovernorHogan, who's a former governor
I was actually able to convincewith Governor Hogan, who's a
former governor, I was actuallyable to convince him and his
(20:10):
administration to remove theincome limits and to allow once
somebody's in the program tosave for the future based on the
amount of money they make in ayear.
So as of January 1, 2024, thisyear, maryland workers with
disabilities in the MedicaidBuy-In Program are able to work
without any barriers on income,which is huge.
Jandel Allen-Davis (20:30):
That's amazing, you know, it's almost.
I guess I'm going to try not toget on a soapbox, but it's
unbelievable to think about whata huge inequity that is.
I can save for the future asmuch as I want and continue to
work as a person not living witha disability, I mean it just so
marginalizes and so calls outdifference where there shouldn't
(20:51):
be.
So what you're doing, you and athrong of others rolling to the
capitals all over this country,is welcome, and you know, I
think there's also an all boatsrise with the tide playing out
here too, because the same thinghappens for able-bodied, poor
people who are trapped inpoverty because of some real
(21:13):
arcane regulations and rulesthat need to change.
Josh Basile (21:17):
So thank you, and the only way they're going to
change is to is to speak up.
Let your voices be heard, letyour wheels be heard.
Just you, your wheels, be heard.
You got to be heard.
The only way to really changethe world is to immerse yourself
within it and to let the worldaround you know that you have
value, that you have purpose andthat your future is up to you.
(21:42):
I learned early on in my injurythat nobody's going to fight
harder for me than I'm going tofight for myself.
And when I learned that I myinjury, that nobody's going to
fight harder for me than I'mgoing to fight for myself.
And when I learned that Ibecame an advocate for life and
I need to be able to bringtogether other beautiful people
to fight alongside me so that wecan amplify our voices and
stories and to show thatsystematic problems need to be
(22:05):
fixed, because it's just not oneperson falling through the
cracks, it's many.
Jandel Allen-Davis (22:10):
What are some of the other big cultural
issues that do need to changethrough yours and others'
leadership?
And not just those who arewheelchair users or who are
spinal cord or brain injury orany other disability, but those
of us who do use these twothings to walk around on and can
(22:31):
jump out of bed.
What's some of the big thingswe have to struggle with?
Josh Basile (22:36):
Yeah.
So the patience and persistence, it's key.
Like you can't win every daywithin the advocacy game, it
just doesn't work like that.
Small incremental wins and manylosses together both of those
together is forward moving.
(22:56):
It's like even this year,through the Maryland legislature
, I brought forward a bill sothat people age 65 and above in
Maryland could be able to workwithout losing all their
Medicaid, which currently youturn 65, it's time to retire,
which is not fair.
There's a marriage penalty, soif I were to get married, my
(23:18):
premium per month would go from$50 to over $500, $700 a month,
which disincentivizes marriagewhich I would love to marry, the
love of my life my fiance andthe Department of Health in my
state was able to kill the bill,but we were able to get a
survey put forward so that overthe next year they could study
(23:41):
it.
We got the media behind us and Ifull heartedly believe in 2025,
we will get the bill passed.
We didn't get it done this year, but we were allowed enough to
get the powers to be torecognize that they needed to do
something, to get the powers tobe to recognize that they
needed to do something.
There's a big issue right nowwith access to care and good
(24:03):
care and making sure that thosethat are attendants and nurses
want to enter this field and getpaid a fair wage, and that's a
struggle.
I see quadriplegics like myselfand my level of injury getting
two to three hours in themorning and two to three hours
in the evening.
That's tough being able to havethat number of hours for care.
(24:24):
When you're paralyzed below theshoulders, it's almost torturous
to not have the supports neededto be able to tackle your day
and live your best life.
There's so many things that weneed to do within transportation
to be able to tackle your dayand live your best life Like
there's so many things that weneed to do within transportation
to be able to give access tomore people to the world around
them, and you know we live in aworld right now where the
(24:47):
Internet is.
You know most people nowrealize that they have to make
their physical storefrontaccessible to people that are
going to be customers, but wenow live in this huge digital
world where our websites need tobe accessible.
The different products and theway that we communicate with the
world online needs to beaccessible, and I've been
(25:10):
extremely passionate about that.
Jandel Allen-Davis (25:13):
There's no shortage of work for us to do.
I mean the very and it's all.
As I look at it, it just it's.
I gotta tell you it's angeringand I'm going to try not to get
emotional, but you know, whenyou're talking about being able
to marry, to marry, you know oneof the things that we hold so
at least politicians dosacrosanct and wonderful being
(25:35):
able to get around where publictransportation actually works,
let alone private, and isaffordable.
Employment, which you knowlessening, to use a phrase, the
burden of government in general,just to have full access to
employment.
And, in particular, one of thethings I don't know, that I've
said this to you but your storycertainly once again reinforces,
is that the people many, most,in fact I dare say all people
(25:59):
living with spinal cord injuries, absent congenital conditions,
woke up with one reality andwent to bed with a very
different one.
It's not as if they lefteverything that they are and
were and their potential on thatocean floor or on that, you
know, the side of that road in acar accident, or at the bottom
of that building from a fall, orthose stairs from a fall, and
(26:21):
yet we throw and we waste somuch realized, actualized and
potential this way, home health,and then accessibility through
as we become a more digitalworld.
Those are just five of a hostof things that will keep a ton
of us busy.
It's one of the things just alittle sharing is, I've thought,
(26:44):
why did the heavens put anOBGYN in the place of service at
a national neurorehabilitationhospital?
And I knew what it was.
It was to use my voice onbehalf of the vulnerable, and I
call myself a warrior for thevulnerable.
So together we're stronger.
I rarely say fatigue or tiredbecause there's lots of work
(27:05):
left to do.
But what would you, from your38 year vistas, say to we old
folks, because and I think it'simportant to get that and by old
folks, old leaders, old peoplewho are going to be in the fight
till the fight ends?
I say that because maybethere'll be a day that old Josh
will need to hear that fromyoung Josh.
(27:27):
So what would you say to thoseof us who you know these fights
get all this many years of doingthis and at my age given
therefore, you know, know, whenI went into medicine, what it
looked like, let alone the veryfew leaders of color and
certainly disabled leaders thatare out there who are the sort
(27:47):
of the, the pioneers in someways I would just say the
importance of of purpose, theimportance of knowing that when
you get to wake up, you choosewhat you want to do next.
Josh Basile (28:02):
So if you're tired of beating the same drum over
and over again, there's so muchmore, there's so many new drum
beats that you can create indifferent directions in life to
truly create meaningful changeand to have that influence
around you.
Like there's not enough hoursin the day for me to do what I
(28:26):
want to do now, but I know if Ineeded to go in a different
direction, I could go ininstantly and do something new
and still be able to make bigimpact in that area.
And it kind of makes me excitedto know.
You know, like my spinal cordinjury, you know it immediately
(28:46):
had me at a reset button, but italso started a new chapter.
And you know, after you know,graduating from law school it
was a new chapter.
You know, after you know,graduating from law school, it
was a new chapter.
After falling in love andfinding the love of my life,
katie started a new chapter.
I got to immediately become afather to her beautiful
(29:07):
three-year-old daughter and thenext thing you know, katie
underwent in vitro fertilizationand I became a dad from the
beginning, and that was a newchapter.
It's just.
Each and every chapter of ourlives can begin something new,
but it's up to you to be thatstar, that main character in it,
(29:29):
and what you do next.
So, whatever if you're 38, orif you're 70, the truth is that
each and every chapter thatcomes next, you are the actor in
it to decide what happens next.
With that next word, the nextsentence, that next page, we are
(29:52):
the narrator of our journey.
Jandel Allen-Davis (29:55):
This hour, there's been just so many gems
that you've dropped, not just inservice to and in support of
persons living with spinal cordinjury, but those of us who
aren't.
And one thing I suspect that,had that wave not changed, your
trajectory would have been partof your future, would have been
this desire, this drive, thisneed, this responsibility to
(30:19):
mentor, and I know that you'relike you said there's always
another cool thing you're doingand you are doing something
interesting in the mentoringspace.
Josh Basile (30:27):
We're creating a national peer mentoring program
to get to families as early onas possible within the critical
unit, within the inpatientsetting, and making sure that
you know just if the personthat's injured needs somebody,
we're there for them the secondthat they're ready.
Oftentimes you need to mentorthe family members as quickly as
(30:51):
possible to get them so thatthey're ready to make that
transition from hospital to home, which is very scary.
I remember coming home from theinpatient hospital and I was
there within the hospitalsystems for almost two and a
half three months and when Icame home and they wheeled me
(31:13):
into my garage I saw an old pairof cleats and a tennis racket
and that's when it hit me.
The life was going to bedifferent from that moment on.
I really did not get it as muchwhen I was still in the
hospital.
But creating an internationalpeer mentoring program, we're
going to try to get to familiesearly on, to every hospital, and
(31:35):
also to get technology tofamilies early on to every
hospital and to get also to gettechnology.
What?
What if we could get a piece oftechnology into someone's mouth
immediately after their injury,to actually give them
independence back and to givethem the ability to control
their environment, tocommunicate with the world
around them, to be able to, tonot just be in that hospital bed
staring up at the ceiling,blinking once for yes and twice
(31:58):
for no?
What if, from day one, thefirst week, we can give people
the ability to not go down aroad of depression, which every
single person with a spinal cordinjury gets a dose of
depression Like.
It's hard not to.
It's the reality of the day.
But how can we give them thetools they need, the mentors
(32:20):
they need to have a betterfighting chance, to live their
best life and to not be alone?
That's something I would loveto try my hardest to give to the
world and something that, atleast in this chapter, I'm going
to be fighting for.
You know there's just so manythings that we're all doing that
(32:40):
are contributing, and CraigHospital.
You know I came out therebecause I brought five families
to go adaptive skiing fromaround the country and we came
to the Denver area and it's justlike it was a no brainer.
I had to get out to Craig.
We've heard so much of themagic that happens and the
(33:01):
families that the lives thatyou've changed, and being within
your walls it made so muchsense.
It was such an incredible placefor healing to occur and for
people to come together andlearn and I put on a support
group when I was there and therewas like 60 families, like it
(33:21):
was just.
It was so beautiful to have atouchpoint early on in those
families' journey and tohopefully say like I had a part
in getting them in a newdirection.
Craig helped have a part ingetting them in a new direction.
Craig helped have a part ingetting them in a new direction.
So it's just coming together,being the matchmakers and
(33:42):
actually doing somethingtogether.
It's like I'm excited for us todo a lot together.
Jandel Allen-Davis (33:49):
Well, I think that our futures are
bright in that respect and, aswe end, I just wanted to say to
you that, as a person who's donethis journey through different
you know sort of a differentlens, a different set of, I'd
say, absolute challenges from asocial, a political and economic
(34:10):
perspective, despite, or maybebecause of my comment about
fatigue that just hits you everynow and again, keep going,
because I was 38 at one point inmy life and at this ripe and
still ripening age of 66, Istill feel like there's tons
more to do.
So then, when we hit, when youhit 66, you'll listen to me
(34:32):
saying this to you because I'llbe a lot older and I hope I'm
still saying things to you tosay keep going.
We got lots more rolling to do.
Josh, I want to thank you.
This has been just an honor, aprivilege and you know it's
funny how life works meeting youin a gym on the fourth floor at
Craig and a room full offamilies who come together
monthly to share a meal andcatch up with friends and work
(34:54):
with both our formal and lessformal peer mentors who are
there.
Who would have ever thoughtthere'd come a day that we'd be
hanging out in Washington DC,your home, where you're doing
fabulous work, and having achance just to share some
thoughts, and thank you forbeing here with us today.
Josh Basile (35:11):
It was a pleasure to be here and you know I'm a
big believer that beautifulpeople gravitate towards each
other, so we're doing good inthe world and that good attracts
each other.
Jandel Allen-Davis (35:27):
Wow, what an honor and privilege it was to
spend an hour with Josh Basile,an amazing disability rights
advocate, and I loved the linethat he said about being the
hero in your own story anddidn't say it in a way that look
at me being the hero in my ownstory, but recognizing his
(35:47):
personal power and agency totake what he called every
chapter and actually leveragethe opportunity for new
challenges and fun.
And he's managed to do thatbeautifully, while never,
interestingly, giving up thepossibility of hope for a cure,
(36:08):
which is one of the componentsof something that we haven't
talked about on this podcast,namely the Craig recipe, and
that is what we think is thatrecipe that makes Craig Hospital
so special.
What he has learned over timein terms of the implications of
each level of spinal injury,opening a new world that he's
(36:29):
had to navigate transportation,and does so beautifully.
Employment he's had to stitchtogether and has a wonderful
caregiver.
But the home health situationthat is quite a challenge for
those living with spinal cordand brain injuries or any other
kind of disability.
And certainly how he leveragesthe accessibility that already
(36:54):
lives in technology and willonly continue to flourish over
time because of the genius of somany people working in this
space.
And then, if there's somethingthat just really frosts me and I
will say it that way are theways that some of our public
programs work to keep peoplelocked into certain levels of
(37:15):
income and also then make somethings as basic and as part of
life, as marriage literally andpardon the pun inaccessible to
parts of the population orsomething that we really do need
to address at some point.
But what I'd say about Josh, andin this wonderful interview
that just was the highlight ofit for me, is that his eternal
(37:39):
optimism in the face of allsorts of challenges.
He is a beautiful, wonderfulyoung man and man.
Are we both blessed as a worldand a country to have someone
who's done the kind of work,alongside all other sorts of
heroes in their own story toremove barriers, to break
through barriers and to createnew possibilities for people
(38:01):
living with disabilities?
Interestingly, when I thinkabout what we do at Craig, it's
a perfect sort of bow on thiswonderful interview that we had,
or opportunity for a discussion, and that is because that's
what we do at Craig and that'swhat this wonderful culture that
is buttressed by a ton ofcourage, a ton of optimism and a
(38:21):
lot of systemic sorts ofstructures that we've built to
absolutely fuel the ways that webreak through barriers to
create opportunities forindependence, at the same time
recognizing that the work isnever done.
So thank you again for joiningus at Unstoppable at Craig, and
I look forward to the nextconversation we'll have as we
continue to explore what makesfor great cultures and, more
(38:44):
importantly, who are the peoplewho are part of building those
great cultures.
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