May 8, 2025 • 54 mins
What does freedom look like when you navigate the world on wheels? For Jenna Udenberg, it arrived in the form of a Firefly - an electric attachment that transformed her manual wheelchair into an adventure vehicle capable of tackling trails she'd only viewed longingly from afar.
Diagnosed with juvenile rheumatoid arthritis at age seven and using a wheelchair by eight, Jenna refused to let her mobility challenges define her life's boundaries. From becoming a left-handed trumpet player (despite being told it wasn't possible) to creating adaptive music programs that helped non-verbal students find their voice, her journey exemplifies resilience and creative problem-solving.
The pandemic marked a turning point when Jenna left her 19-year teaching career and discovered a new calling as a disability advocate. Through her nonprofit "Above and Beyond With U," she champions the philosophy that true accessibility transcends mere ADA compliance checklists. As she powerfully states, "Nothing for us without us" - accessibility planning must include disabled voices from the very beginning.
Our conversation explores how Jenna discovered newfound independence on Minnesota's state park trails, the transformative power of community support, and why her autobiography is titled "Within My Spokes." You'll gain fresh perspective on what adventure truly means and how accessibility benefits everyone.
Whether you're disabled, know someone who is, or simply care about creating a more inclusive world, Jenna's insights will change how you think about accessibility in outdoor spaces. Listen now to hear more inspiring stories of people finding their own unique paths to adventure despite life's challenges.
Want to be a guest on Journey with Jake? Send me a message on PodMatch, here: https://www.podmatch.com/hostdetailpreview/journeywithjake
Visit LandPirate.com to get your gear that has you, the adventurer, in mind. Use the code "Journey with Jake" to get an additional 15% off at check out.
Visit geneticinsights.co and use the code "DISCOVER25" to enjoy a sweet 25% off your first purchase.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
There's a powerful saying within the disabled
community nothing for us withoutus.
My guest today, jenna Udenberg,embodies that spirit through
her advocacy, community serviceand the incredible work she's
doing with her nonprofit.
Jenna has used a wheelchairsince childhood, but that has
never held her back from seekingout adventure.
With the help of her realmobility Firefly, she's out on
(00:21):
the trails, discovering newpaths and living life to the
fullest.
Get ready for an inspiringjourney with the unstoppable
Jenna Udenberg.
Welcome to Journey with Jake.
This is a podcast aboutadventure and how, through our
adventures, we can overcome thechallenges of life that come our
way.
While I expect you will learnsome things about different
adventures, this show willentertain you.
(00:43):
Each episode will featuredifferent guests or guests as
they share experiences andstories from the different
adventures they have been on.
Not only will you beentertained, but you'll also
hear the failures and trialseach guest faces and what they
have done or are doing toovercome the hardships that come
their way.
My goal is to take each of uson a journey through the
(01:03):
experiences of my guests, withthe hope that you'll be
entertained and inspired toovercome your day-to-day
challenges.
After all, it's not all aboutthe destination as it is about
the journey.
(01:29):
Hello everybody and welcome toJourney with Jake.
I'm your host, jake Bushman,and I'm excited to bring you
another fantastic conversationToday.
I had the pleasure of speakingwith Jenna Udenberg.
Jenna has been in a wheelchairfor most of her life, but that
hasn't stopped her from livingadventurously and being a
powerful advocate for thedisabled community.
It was truly an honor to speakwith her.
(01:49):
Before we dive into thatconversation, just a few quick
reminders.
Journey with Jake is now onYouTube, while podcasts are
usually an audio experience.
If you'd like to see me and myguests as we chat, head over to
YouTube and search for Journeywith Jake podcast.
Be sure to subscribe to thechannel and hit that like button
.
I'd also love to connect withyou on Instagram.
You can find me at Journey withJake podcast.
(02:11):
Leave a comment, send me a DMor give me a follow to check out
clips from the show and seewhat's going on in my world.
And one more thing Journey withJake is proud to be part of the
Podmatch podcast network.
If you're looking for othergreat shows to check out, visit
podmatchcom forward slashnetwork.
Now back to Jenna.
She may be in a wheelchair, butthat doesn't stop her from
(02:33):
being active in her communityand exploring the world around
her.
If you enjoy this episode,you'll definitely want to check
out episode 30 with Sean Delaney, who shares his own adventures
while managing life with kidneyfailure.
With Sean Delaney, who shareshis own adventures while
managing life with kidneyfailure.
All right, let's jump into myconversation with Jenna Udenberg
.
All right, I have JennaUdenberg on the call with me
today.
Jenna, welcome to Journey withJake.
Speaker 2 (02:54):
Yeah, thanks for having me, Jake.
Speaker 1 (02:55):
Yeah, this is fun.
I was telling you earlier, likeyou know, today kind of a grind
, kind of just a day, but thisis what I love love the fact
that I get to sit back, talk tosomebody, somebody who likes to
be adventurous, somebody who hasa story to share, and I love
that.
That's what I love doing thispodcast, because I get to hear
from people like you.
So I'm excited to hear yourstory Before we dive into kind
(03:17):
of what you got going on,background information, kind of
where you from, where you grewup, that sort of thing, if you
don't mind.
Speaker 2 (03:22):
Yeah, great.
I am from Two Harbors,minnesota, so on the beautiful
north shore of Lake Superior,born and raised, went to
university in Duluth and got adouble degree in music education
, both vocal and instrumental,and then I went back to a
different local college for mymaster's of education with tech
integration, did the musicteaching gig for about 19 years
(03:47):
and then the pandemic hit.
So now I'm on a disabilityretirement and that's been an
interesting journey.
During that time, I was a 2020Bush fellow.
That was exactly the greattiming of big life pivots and so
now I'm an accessibilityeducator, disability advocate
activist, started a nonprofitcalled Above and Beyond With you
(04:08):
, became a published author,write a bi-weekly column for
Lake County Press, which is alocal newspaper in the area.
Also, during the pandemic andmy Bush fellowship, I fell in
love with using a real mobilityFirefly, which is most of my
adventures come from.
So lots to share with you.
Speaker 1 (04:27):
A hundred percent and I'm part of me.
I'm like I don't even know whatshe's talking about here, with
half of this stuff the Firefly,you know.
So we're going to, we're goingto get into all that.
You talked about the Bushprogram, that you did Bush
fellowship.
How do you say it?
What's the correct way?
Speaker 2 (04:40):
Yep Bush fellowshiphip.
Speaker 1 (04:42):
Bush Fellowship.
What is that exactly?
What is a Bush Fellowship?
Speaker 2 (04:46):
So it is for leaders in Minnesota, north Dakota,
south Dakota and the 23 tribalnations in those geographical
areas.
They invest in 26 human beingsevery year and it's really just
a way of developing your ownleadership style.
Whether it's that you're tryingto get a pre prescribed like
(05:07):
certification, or going for abachelor's or master's or
doctorate, it's a way of youinvesting in yourself.
So there's a lot of it that'sabout your self reflection, your
your self care, your soul care.
You know however you want touse it.
You can also use it as likesomething that you prescribe for
yourself which is the way thatI went, and really the sky's the
(05:27):
limit Like you can use it totake a sabbatical.
So if you want to use that topay your bills and take some
time off of work and like,invest in yourself, take care of
burnout, take care of medicalstuff that's inhibiting you from
being the leader that you canbe, that you can be.
It's just amazing and, as youcan imagine, it's highly sought
after.
When I did it in 2020, it was$50,000 a year for up to two
(05:52):
years, and now I know they'veincreased that amount and
they've also decreased thedifferent levels that you have
to go through for theapplication process.
But I want to say they havelike 700 to 1000 people apply
every year.
Once you're a fellow, you'realways a fellow.
It was an amazing opportunity.
It got me through the pandemicand huge life pivoting changes.
Even just going on theirwebsite even if you're not from
(06:13):
those geographic regions justgoing to their website it's
bushfoundationorg and then justlook for the Bush Fellowship,
just answering for yourselfthose application questions is
an amazing tool in itself to seewhere you're at, where you want
to go.
Are you dreaming about things?
And their tagline is thinkbigger, think differently.
So it really makes you get outof your everyday mundane grind
(06:37):
of Mondays because we'rerecording on a Monday Right and
be like whatever day of the weekit is, whatever season of life
I'm in.
Where am I at, where am Istruggling?
Where can I be doing better andwhere can I focus?
Speaker 1 (06:53):
and refocus these energies and priorities on
Amazing.
Okay, yeah, I'm curious to seewhat some of those questions are
, what the application processis like, just like you said, to
kind of bring me out of my ownshell sometimes.
I mean that might beinteresting, just to kind of get
a feel for it.
Speaker 2 (07:06):
Yeah, absolutely, and then that led to me becoming a
2025 Shannon Institute leader,and so that one is actually open
for the whole nation, so youshould check that one out too,
that one you pay for instead ofbeing invested in.
But still, so far, I've had theretreat and heading into our
first virtual retreat thiscoming weekend.
So far, I've had the retreatand heading into our first
virtual retreat this comingweekend, but that in itself has
(07:27):
been amazing to get togetherwith other leaders and similar
journeys and finding your people, finding your support systems.
Speaker 1 (07:33):
That's awesome, Finding your people, finding
your support system.
Grew up in Minnesota Parents,siblings.
What do you got going on there?
Speaker 2 (07:41):
Yeah, both my parents are still alive, they're in
their early 80s.
I have three older siblings andolder by a lot my brother's 16
years older, and then I have twosisters, 15 and 12 years older.
So they always love to tell methat, you know, I always say
that I was the oopsie andthey're always like, no, you
(08:02):
were the planned one and I'mlike I'm sure it's somewhere in
between those two potentially.
But yeah, so it was great.
But it was different growing upbecause, as you know, I was
three when the two oldestgraduated from high school and
then I was seven when the nextone graduated.
So in some ways, yes, I havethree older siblings, In some
ways I was kind of a lonelypetunia, kind of an only child.
(08:23):
And then you add my disabilityat age seven, or my diagnosis at
seven and in a wheelchair atage eight, and that also just
changed the dynamics of of life.
Speaker 1 (08:33):
For sure.
And let's let's dive into thata little bit your disability and
kind of what went on, becauseyou know, sitting you and I
talking here, can't tellanything's going on with you,
you can't see the wheelchair,you know, know.
So, hey, everything looks fine.
But I know earlier you kind ofmentioned, you know, about
accessibility and things likethat what, yeah, what's the
diagnosis?
What happened?
Kind of give me the scoop.
Speaker 2 (08:52):
So short Reader Digest version is I was seven
years old, getting ready forschool one morning, hanging out
in the lovely golden rod castedbathtub because you know the
late 80s, you still have theretro of the 70s was playing in
the bubbles and I'm sure I wasscrewing around and all of a
sudden my one knee floated atthe top of the bubbles and it
was like bigger than the size ofa softball.
(09:14):
And then I let my other kneefloat up and that was like a
typical little girl, you knowtennis ball or smaller size.
And what does any seven yearold girl do?
You screen for your mommy?
And so from there I went to adoctor and the first doctor said
oh, you probably have water onthe knee.
And my dad, who did volunteerambulance stuff, was like my
(09:35):
seven year old daughter is notan athlete, didn't have a big
you know injury or anything likethat.
So then we got a second opinionin our small rural town and
thankfully we had two differentdoctors right, being small and
rural, and he took one look atme and he said I think she has
juvenile rheumatoid arthritis,so we're going to send her to
Duluth.
And so I saw a rheumatologistin Duluth and he said well, I
(09:59):
can't officially diagnose youbecause that's when Lyme disease
was new on the scene, which isa tick-borne disease.
So I had to go down to MayoClinic in Rochester, minnesota,
and they had to run me throughall of the not fun tests that a
little girl could imagine.
And seeing your dad kind of gethot and bothered and standing
(10:20):
toe-to-toe with a radiologistwho is like you're going to
drink that barium and you'regoing to like it and you're
putting me behind schedule andyou need to do this thing and I
don't care if you like it or not.
And then my dad stepped in andwas like you will not talk to my
daughter that way or you willbe drinking this barium.
Shout out to my dad Love my dad.
He would not like me tellingthat story just because you know
.
But you know, for all the dadbears out there, like, keep
(10:42):
doing you, keep protecting yourkids.
Yeah.
And then it was hard because,like for those that have been in
the medical world, let alone atRochester and other medical
centers, it was hard as a littleseven-year-old, like A, they're
using weird medical jargon andwords and talking about me, not
with me, and then a lot of themEnglish was their second
(11:03):
language, not with me, and thena lot of them English was our
second language.
So then also trying to getthrough the thick accents and
like I don't, I don't even knowwhat you're saying, let alone,
like I said, those big medicalwords.
But specialist after specialist, they just kept giving me
stickers and lollipops.
So hey, what the heck.
But then trying to read theroom of like wow, mom and dad
(11:26):
are super sad and I don't knowwhat's going on.
I just knew I was in pain, Iknew something wasn't right, you
said your knee was big.
Speaker 1 (11:30):
You know, you noticed in the bath oh man, my knees
like big At that point too, wereyou like not able to walk on it
Like what kind of?
What was kind of the situationthere?
Speaker 2 (11:39):
I don't remember a ton Like the bathtub is the most
vivid long-term memory for me,but it was hot, it was in pain,
it was inflamed, it you know.
I'm sure I was walking with alimp because I can't imagine a
knee almost twice the size.
Yeah, am I a disease?
You know, as a kid you don'tknow any different.
But according to the medicalworld, my disease progressed
(12:01):
very rapidly because within ayear of being diagnosed I was
using a rental wheelchair, amanual wheelchair.
Speaker 1 (12:07):
What was the official diagnosis then from Mayo Clinic
?
Speaker 2 (12:10):
At that time it was juvenile rheumatoid arthritis.
Speaker 1 (12:12):
Okay, just juvenile rheumatoid arthritis.
Speaker 2 (12:14):
Okay yeah but throughout my journey it wasn't
until about 2018 when I was backdown at Mayo for some other
medical stuff they finally cameout and said well, technically
now we call it juvenileidiopathic arthritis because it
never followed the diseasepattern of, like the older
people, getting rheumatoidarthritis.
(12:36):
And I'm like well duh, I couldhave told you that from my young
age, because it was like whatthe medical book says a plus b
equals c and my body's like qtimes the square root of r times
the T.
Speaker 1 (12:50):
Totally, totally different.
Speaker 2 (12:52):
Yeah, and they'd just be like Jenna, we just don't
understand, we gave you this, itshould be doing that.
So then it was like number one,you have, you know, all your
peers and I had great friendsand I had great classmates and
all the things, but there werestill bullies, there were still
people that just didn't get itright.
So I was always that outsiderin a lot of spaces.
(13:17):
And then you would go tomedical and I'm like, oh, these
are my people.
And then they'd be like you'reodd and unique and different and
what so I'm like where do I fit?
Like this is crazy.
Speaker 1 (13:22):
Yeah, so there you are as a seven, eight year old,
and now you're in a wheelchair.
Seven, eight year olds usuallylike to be active, like to be
moving around.
Do you remember what that waslike being confined to a
wheelchair that early on?
Speaker 2 (13:36):
Not really, but growing up I was a tomboy.
So I was, you know, out fishingwith my dad and brother and
grandpa and older neighbor andusing the snowmobile out ice
fishing.
You know, have to be a goodNorthern Minnesotan, come on,
you know, bird hunting, with dadgoing up to the shack.
I never, never, went deerhunting, but enough to hang out
at the shack and you knowunderstand some of those life
(13:58):
things up here and they stillwere able to get me in and out
for, you know, quite a while.
But then it the pain just tookover and the lack of mobility
and just the rigmarole of allthe work right.
So I became way more of aperson that was stuck inside and
, you know, for a while wasstuck in bed.
When I was 15, I went through adepression and had a suicide
(14:20):
plan of like I'm just done withthis, and my plan was to, you
know, keep some of mymedications and try to overdose
or try to throw myself down twoflights of stairs because we had
a split level entry house.
So in my suicidal ideation Iwas like I'll just go down the
stairs, I will log roll to getto my dad's gun cabinet, I will
(14:41):
somehow, you know spider-man upto the top of the cabinet to get
the key to that, like none ofit in the logical world makes
any sense.
But when you're in those spacesit doesn't matter, you don't
think logically, at least.
For in my story, you know, Ijust cried out and said no,
because I know that I'm createdfor a bigger purpose and I know
that there's something else inlife to do and to be and this is
(15:04):
just a really crappy time oflife and at some point the pain
will go away, mobility willreturn, life will have, you know
, better, thriving, better,whatever word you want to put to
it.
And that's where my faithbecame a huge part of who I am
and how I got through things andhow I overcome things and push
around things.
(15:25):
I mean, I don't overcome mydisability there's no such thing
as that but I thrive with, Ilive with disability there's no
such thing as that, but I thrivewith, I live with and it's a
part of me.
So you can't separate JennaUdenberg disabled from Jenna
Udenberg, all the other labels.
It is me, I am my chair, mychair is me, but I'm not defined
by other people'sinterpretation of that.
(15:46):
So I'm not bound to a chair,I'm not stuck in a chair, like
my chair gives me freedom.
I get to do all these amazingthings.
And then you strap the realmobility on me and I'm like you
know it's a third wheel electricattachment.
Yeah, love going to Itasca StatePark.
I figured out there how to likepush myself and then stay in
(16:06):
coast mode and I got it up tolike 15 to 16 miles per hour of
just coasting on paved trail andjust you know, being safe, of
course, if real mobility islistening.
But to just experience that likeI figured out how to yodel,
because it was really fun to godown some of those big twisty
hills, like and be in creationand nature again and be have the
(16:30):
big towering pines over you.
And you know, I remember goingup to an inland lake with a new
to me friend at the time and wejust like went up this little
ramp to this little uh kind ofembankment type of a thing.
You're still up in the trees ona, on a bank, looking over a
smaller lake and I was like, wow, I haven't smelt pine like this
(16:52):
in like forever.
And she just looked at me likewhat are you talking about?
But you get to walk on all thetrails and you can go take a
walk in the woods and you can godo all these adventurous things
.
I can't unless somebody makessomething accessible.
Those were like imagine youknow senses all the way back to
my childhood of like I used toclimb trees like that or swing
(17:14):
in trees like that.
Speaker 1 (17:15):
I want to go back to that time then, when you were 15
and you're struggling andyou're inside a lot and you're
depressed, but you said you gotover it.
What do you think it was?
How did that?
How do you get over that?
Because I always I like to askpeople that question, because I
know when you're in the middleof those battles and it's tough,
it's hard to see how to getpast it.
When you're in it For you andyou talked about your faith a
(17:38):
little bit what was it for youthat really pulled you out of it
?
Speaker 2 (17:41):
Yeah, so definitely my faith.
And then I'm trying not to tellsomeone else's story, if that
makes sense.
So that's why I'm kind ofdancing around words.
A person close to me had ahouse fire while I was in that
time of life and I knew that Ineeded to find that person and
be there for them, and so thatwas really the impetus of like I
(18:05):
need to suck it up.
And, yes, pain is going to suck, but I'm used to pain and it's
important for me to get back tomy regular life so I can be in
connection with this person andkeep tabs on them, as their
whole life was, you know, justuprooted.
And then for me too, my suicidedepression time was around the
(18:26):
Oklahoma City bombing time, solike it was like literally the
day after I just finally criedout and found my faith, I was
like, wow, okay, there arebigger things happening in life
and it doesn't discount the crapthat I was going through, it
doesn't for sure.
All of the different types ofpain and isolation and hurt and
whatever.
But those are the two big pivotWell, three big pivot points
(18:49):
that got me through that.
And then there was differenttimes of, you know, I don't want
to say minimal depression,because depression is never
minimal, but wasn't as seriousas that time of life, but
usually medically induced,usually isolation related and
usually it's always been, youknow, your chosen family, right?
Those friendships, those rideor die friends, those people,
(19:10):
people that are like I don'tgive a crap that you don't
answer my phone, I'm gonna comeknock on your door and you don't
have to be the hostess with themostest, we're just gonna sit,
I will just do life with you.
You don't entertain me, wedon't have to do anything, but
we're just living life together.
Finding those people, investingin those relationships and
(19:30):
doing the things you need to dois really where it's at.
Speaker 1 (19:33):
Wow, I love that.
Yeah, I think you know havingpeople in your life who affect
you and mean so much to you thatare just there to be with you
they don't, you know, there's noother reason for it just to be
there with you.
I love that and I love the factthat you found someone to serve
.
I think that it was a, it was abig thing and I know I know
that because it's, it'sstruggled.
(19:54):
When you're going throughthings, it's just like you can't
see out of it and then, yeah,maybe you have to help somebody
or maybe you know people havethings worse.
Everyone, someone somewhere hassomething going on, worse for
sure, and but it's hard to seethat when you're in the middle
of it.
So I appreciate you sharingthat and I'm glad you had that
faith and you pushed, pushed on,because you've been doing.
You've done a lot since then.
You, you, you get out there inyour adventurous.
(20:15):
You talked about the what waswhat you call it?
the rope, the remote, whateverthe real mobility fire real
mobility, real I gotta writethis down real mobility.
Well, I want to talk about thatin a minute before we dive into
all that.
What is it about?
About music how did you getinto music?
Speaker 2 (20:31):
So my two older sisters and my brother the
outdoorsman had no time formusic.
He tried football for a weekand went.
It interferes with hunting, I'mout.
So yeah, he was definitely nota musical kind of guy.
My sisters, however, one was atrumpet player and one was a
flute player, and knowing myhistory as a tomboy, you can
picture that I did not want thatdainty little flute.
So I'm like all right, I'll trythe trumpet.
(20:54):
In sixth grade my right armstarted to fuse, naturally by
the arthritis, and typicallypeople play you know, the bent
arm right-handed trumpet player.
But I couldn't.
So I started playingleft-handed and my band teacher
at that time was a prettyworld-renowned trumpet dude for
being in rural Minnesota and heI'll always remember the band
room, even though it's no longerthere, and that day because
(21:17):
he's like there is no such thingas left handed trumpet players
and I was like, well, there isnow.
So I'm a Newtonburg, we arestubborn, stoic, scandahoovian
people and it's like you tell mesomething I can't do.
I'm either gonna show you thatI can or I'm gonna do something
completely different to blowyour mind in a different way.
(21:38):
So I became a left handedtrumpet player and I had a new
teacher come in eighth grade andshe was a spitfire and she
really inspired me to become amusic educator and so she saw me
as a whole person.
I wasn't like this disabledstudent.
She never made me feel guiltyfor having to do other things,
(21:58):
you know, like hey, let's takeyour personal car and take you
up to the band competitions, oryou know, all these horrendous
things would never happen intoday's world because of
liability and safety and neverhappen in today's world because
of liability and safety and allthe things.
But growing up in the 90s tolate 90s life was different.
But I'm very indebted to her.
(22:20):
She's a great friend now.
But life was hard right Becausewhen I put that trumpet to my
face, especially when I becamemore of a lead trumpet, when her
and my high school banddirector really believed in me
and saw the musical talent thatI had and the love of it that I
had.
You know they overcomemountains to make sure that I
could be in their program andthey were not going to let other
(22:43):
teachers, other communityleaders tell them that we
couldn't.
In order for me to get to theband room in high school it was
down by the boiler room whowould put a music room next to a
boiler room, that you know thatused wood chips, of all things.
So you know lots of carcinogens, lots of allergens, you name it
(23:04):
.
And in order for me to get downthere it was a whole flight of
stairs and so I would literallybe put on a stair tracker.
So kind of picture what a trackchair like at the state parks
look like.
But instead of it being niceand having the chair attached,
it was literally just thatrubber mechanism of the track
(23:25):
almost looked like a militarytank.
And then there was just like aT of metal that my wheelchair
would roll back onto and likeliterally can't even figure out
like a good description.
I need to work on that.
But like these two pinsliterally held my whole body
weight, my wheelchair weight,onto this track chair not
(23:48):
tractor, sorry, stair tracker.
And then an older lady, likeprobably one of the oldest
paraprofessionals and she wouldmake these comments herself and
she also had carpal tunnel inboth wrists would have to lift
me, my chair weight and the, thestair tracker weight up and
then slowly guide it down, as itwould, you know, be like, be,
(24:10):
like, oh, we're level, and youget down a stair and it just be
kind of like, not kind of likewhen you're at a stoplight and
you see everybody's blinker Idon't know if you're weird like
me and it's like oh, we match,we match, and now we're off.
That's exactly what happenedwith the.
With the track.
It'd be like, yeah, we're on,and now we're not, and now we're
really not and now we're likecompletely off.
(24:31):
Well, I ended up gettinghairline fractures in my femurs.
So at age 15, I was like goinghome one day and I'm like, look,
mom it's a miracle, I can movemy knees now.
And we went to the orthopedicsurgeon and he's like you
shouldn't be able to do that,we're going to put you in for an
arthroscopy.
So they threw me I shouldn't Italk odd, sorry about that, but
(24:55):
you'll get used to that, right.
And so, anyways, they threw meon the surgical table, right.
Just, you know, no prep work,no, nothing, just throw you
right in.
They woke me up after like anhour and I didn't know any
different.
Right, I'm like I can do this.
(25:17):
This is like nothing.
And they woke me up and they'relike um, honey, you have
hairline fractures and like thepain of moving in a hairline
fracture was less than havingthe pain of my knees completely
fused by my disease.
And he's like at age 16, wehave to give you knee
replacements, but we don't havethe parts to do it today, so you
get to stay in the hospital andwait for three days.
Well, amazon gets us the parts,which you know there wasn't
Amazon back in 1996.
Yeah, and then from there I wasdoing medical surgeries every
(25:40):
six, nine and 12 months, becauseonce one joint would kind of
crap the bed, then the opposingjoint on the other side would
crap the bed and so I like nevertruly healed From 1996 to 2002.
I was having joint replacementspretty much nonstop, yeah.
So there was, there was just alot.
So music was important.
It made me feel like everybodyelse.
(26:01):
It gave me a space to justthrive and shine.
It also gave me a spot,especially if you know arrogant
lead trumpet players were adifferent breed.
It was just a space where Icould get the frustration out.
Speaker 1 (26:13):
It was your out.
Speaker 2 (26:14):
Yep.
Speaker 1 (26:15):
And then you went on to have a career in that, I mean
, you taught music education.
So were you teaching?
Was it high school, middleschool, college?
What were you teaching for youreducation?
Speaker 2 (26:24):
I'm a weird one and I love middle school.
Beginning band was my thing,middle school jazz band.
I worked at a parochial schoolfirst thing out of college and
then I moved back up to myhometown of Two Harbors and was
beginning band and then becamegeneral music teacher and then I
also worked at our charterschool for also beginning band
and then some different thingshappened in the district and so
(26:46):
then I had to go up to aneighboring town called Silver
Bay and be their choir teacherand general music teacher and
then, near the end of my career,I was able to start an adaptive
music program, which was trulythe highlight of my career and
just such an amazing time tosupport kiddos with disabilities
and their families and apply,you know, their IEPs and all the
(27:09):
things that they need, all thesupports they need, working with
our speech language pathologist, and it was just amazing.
I wish every school could havethat and I wish every program
could come alongside all of ourlearners and give them what they
truly need to be successful andthrive in all the different
settings.
Speaker 1 (27:27):
What does it do for them?
Like when you see, you knowkids who are struggling or kids
who have disabilities and needthe help, and you give them that
help and you have theaccessibility form.
What does it do for them?
What do you see in their, theireyes, or what do you see?
Speaker 2 (27:39):
Yeah, it was awesome because so a lot of our kiddos
primarily were on the autismspectrum or were non I don't
like using this term because Iknow it's old but I can't think
of the right one but nonverbalare different, different ways of
expressing what they needed.
The biggest story of it is wewere so.
(28:00):
What we would do is we wouldhave all of our classes before
it, so adaptive music would bebefore general music and then I
have those kiddos in generalmusic because there's multiple
music teachers.
But then we could take likethree or four weeks and prepare
them for what those activitieswould be like.
So maybe something that mightbe slightly triggering or a
sensory issue after a month ofgetting more used to playing a
(28:23):
game with a ball or having theparachute in the room or you
know, just easing into some ofthose experiences.
Then after a month or whatevertime frame they needed that to
be.
Then when they came to generalmusic with all of their general
peers, it was amazing to watchtheir general peers go.
Jake can play the ball gamewith a parachute.
(28:46):
I can play pass the pumpkinwith my other friend that I've
never done whatever with.
But the most touching and mostimpactful story was we had an
open house for families so theycould see what we'd been doing
all year.
And some of the kids' favoritesong was Skin a Marenka, dink a
Dink I don't know if you knowthe song and in it you end up
(29:07):
singing I love you, up singing,I love you.
And so one of our kiddos, whohad never spoke, never sang,
turned around to mom and dad andgrandma and sang I love you.
And they lost it because theyhad never heard the voice of
(29:29):
their child tell them that theylove them.
So the power of music, thepower of getting over ourselves
to meet the needs of allstudents, of all people.
Speaker 1 (29:41):
Yeah, that's beautiful.
That is got me all choked uphere.
That's amazing.
I mean right, wow, wow.
What an experience to see that,to hear that.
Speaker 2 (29:52):
Yeah, and I didn't know what was going on.
I'm like, why are they crying?
What's going on?
And then the coolest part isthen I'd see grandma for years
to come because she worked atone of our local fast food
drive-thrus and so I'd be goingthrough and then I'd get her and
she'd be like, and she wouldjust be bawling like just giving
me my McDonald's through thewindow and I'm just like I'm so
(30:12):
sorry.
Like I'm not sorry, but I'msorry, I'm making you cry at
work.
No, you know there's.
We just don't know the impactof us just doing our passionate
work enough.
But when those stories happen,we need to share them Because
then that inspires other peopleto have action.
Like, let's not just sharestories to be inspired, it's
(30:32):
that action step.
What's the next thing?
What are you doing with thatinspiration?
Speaker 1 (30:38):
So we talked about.
You know this is an adventurepodcast and I know we've talked
a lot about what you've beengoing through and music, and to
me it's all adventurous.
You've been set on your when,you know, I always put on my
question you know what's theadventure we're going to talk
about.
He said my adventure is thatI'm in a wheelchair and I grew
up in a wheelchair and it is.
It is an adventure because ofthe things you have to go
through and the things youaccomplish.
But we talk about Rio Mobility,firefly 2.5, was that your
(31:03):
mobility device, your wheelchair?
What did that allow you to do?
Tell me about it.
What is it and what kind ofadventures has it allowed you to
do?
Speaker 2 (31:12):
Yeah, so I'll make sure that I send you lots of
pictures.
Unfortunately, the cover of mybook you just see my backside
instead of the front.
So I'll make sure that you seethe front side of what the Rio
looks like, or Firefly.
Yeah, so you have to haveattachment mounts on your
wheelchair.
So thankfully I have a verymechanical brother in law that
could help me with the initialsetup of it.
(31:33):
And then it just really haslike clamps that go over them.
So unfortunately andfortunately, I have to have a
non disabled or at least lessdisabled than I am person that
can kind of lift it over thosebrackets to then get it settled
right, so the locks will lockdown.
But essentially what it does isit just takes my manual
(31:53):
wheelchair and pop it into awheelie and then the front
mechanical wheel is now becomewhat my casters are.
So the casters are just upfloating in the air, and so it's
my back two wheels and then thefront wheel of the Firefly, and
the batteries typically lastabout 12 to 15 miles.
So of course, with my BushFellowship money I also got a
(32:14):
another battery, because once Igot a taste of freedom it was
like 12 to 15 miles is notenough because you can only go
six out and then you have tohave enough battery to come back
.
Adding the Firefly adds someextra weight.
So, yeah, no, not going to pushthat up some hills.
No, it has been absolutely lifechanging, and not only in just
the adventures.
And getting the wind in my hairand having independence, like
(32:36):
that was another big thing waslike hey, we're in the middle of
the pandemic, I'mimmunocompromised.
I've never had to divulge myinvisible disabilities.
I had never seen me as weak orneeding those supports in those
different ways.
So even like the thought ofhaving people stand over me and
pushing me and breathing down onme and I mean just the world we
(32:58):
lived in at that time andhaving to be more medically
conscious of that than than mostpeople man finding like these
trails and stuff, dude, it'slike the best well-kept secret.
I'm like otherwise I'd be likestate park what?
Why do I care about state parks?
And I'm like, bring me to yourpeople.
I want all state parks to beaccessible like as best they can
(33:20):
.
Like we get the fact that youcan't take rugged terrain and
always make it whatever withoutindustrializing it.
And we don't want.
I don't want that.
I can speak for myself, being uphere on the Gitche Yami trail,
being out, like I said, out inItasca state park, going on the
Mesabi range trail.
Now it's like I plan all mysummer vacations based on trails
and like, more importantly, whowill go with me?
(33:41):
So the the network of peoplethat that has opened up has been
fantastic and when I'm out onthe trail people actually look
at me in the eyes.
Bikers and walkers and hikersare like some of the coolest
people because they're like hey,look at you, you know, and like
they might not always say thethe best known things, right,
(34:02):
but by and they're just likethis very welcoming people group
that is like hi, how are youwhen?
It's like you go in a store andeverybody's like looking down
at me and like, oh, do we talkto her?
Do we ignore her?
Do we engage?
Do we not engage?
But everybody on the trail islike hey, hey, and it's just
(34:22):
like I'm an introvert.
I don't know how to deal withall these people saying hello
all the time and now I'm justlike I'm an extrovert on the
trail.
Hi, how are you?
Great weather, blah, blah blah.
Yeah, it's just cool being inother communities now, like
literally communities, but alsocommunities of different people,
and, yeah, just awesome.
Speaker 1 (34:44):
Do you have a favorite?
Either state park or trail, orsomething that you've been on,
or one that just has specialmeaning to you, for whatever
reason?
Speaker 2 (34:51):
Yeah, that's a great question.
Like I said earlier, itascaState Park, for sure, their
paved trails are in primocondition.
You get to see so muchdifferent flora and fauna.
There's so much other naturalthings up in that neck of the
woods in Minnesota.
Lots of hills and twists andoff you know different things
(35:12):
and also great tourist centersand visitor centers that meet
your accessibility, bathroomneeds and you know just all the
basic human needs, right.
But also I would say the gitchegammy trail here on the north
shore has been the most amazingfor me because all of my years
driving from two harbors tosilver bay, longingly looking
(35:34):
out like what is that about overthere?
How can I get on that bridge tosee Lake Superior from that
view, will I ever get to?
And then now, knowing a lot ofthe leaders of the Gitche Gammie
Trail Association and gettingto know that nonprofit and
learning how nonprofits comealongside Minnesota DNR to make
(35:56):
things more accessible and tomake our trail system, and it's
just been a wealth of amazingrelationships and building of
community that now I'm like, hey, I can drive by here and I can
wheel over there and I can be onthat bridge.
So some of the bridges I callmy bridge, which you know.
They're not my bridge, but inmy little world they're mine.
Speaker 1 (36:16):
They're your bridge.
Speaker 2 (36:17):
They can be your bridge too, all right.
Speaker 1 (36:20):
Perfect.
Thank you Appreciate that.
I've never been to minnesota,so you know, maybe I need to
make a trip so gotta come it'swhere yeah, absolutely.
You talked about theaccessibility and and I like
what you said.
You said you know you get it,that something.
You know places have roughterrain or whatever and they
can't.
Everything cannot be accessiblelike that as far as you know
paved walkways and stuff.
(36:40):
But what are you doing anythingspecifically to kind of help
that?
You know, get the get the wordout about?
Hey, how do we make this moreaccessible?
I mean, what kind of things canpeople do, I guess, for that?
Speaker 2 (36:49):
Like I said, partnering with the Gitche Yami
Trail Association.
I'm also working with the DNRin.
You know how do we continue todo great things in Minnesota,
whether it's at our state parksor with the trails.
I also just recently gotappointed to like their legacy
trail through the whole state ofMinnesota commission.
So that's like new as of lastweek.
(37:09):
So you heard it here first, butyou know I try to be as engaged
as I can and then also, you know, of course, with my board,
through Above and Beyond Withyou, with our nonprofit.
You know we're trying to figureout how do we come alongside
some of these places that arealready doing the work, and the
biggest thing is in disabilityculture.
We have the saying of nothingfor us without us.
(37:31):
And so at every step ofplanning, of execution, of
maintenance of, you know, rehabof these trails, of these parks,
of these outdoor adventures, isthere a stakeholder who
represents disability cultureand community?
And if there's not, then that'sthe problem.
(37:52):
And if, if you just invite usafter the fact, like before I
started the non-profit, before Istarted doing the talking, it
was always like oh, jenna, wemade this great space and we
want you to come and see it andthen will you do an assessment
of it and tell us how great itis?
And I was like this is reallyawkward, because what if it's
(38:13):
not?
And many times it was just likelittle things right.
Like the contractor put thesoap dispenser where you
couldn't reach it because it'sback on the mirror instead of on
the side in the bathroom, orthis threshold is like quarter
of an inch too high or too bigfor somebody with anti-tip bars
on their chair, or you know.
(38:35):
The list goes on of like whatit could be.
And I'm like, oh, please, don'task us to come and like kind of
give you the pat on the backafter the fact, because you're
not going to go find morefunding to retrofit something
that's brand new.
But if you come to us at thebeginning, like even when it's
(39:04):
in the brainstorming phase andwe start talking about universal
design and it's a part of thewhole process, then we can be
more successful and like, up inour area we have a couple
different trailhead buildingsgetting built and you know
anything from showers tobathrooms, to resting spaces, to
congregating spaces, and it'sjust really important to have
that aspect there the whole time, because I've also been in
projects where it's like, hey,come and talk to us at the
beginning and then then there'scricket, cricket throughout the
whole process and it's like cometo the ribbon cutting ceremony.
(39:25):
And it's like, oh, you forgotthat conversation we had back in
June of two years ago and nowit's too late to go.
And oops.
Speaker 1 (39:37):
Yeah, that makes total sense Because I think a
lot of people probably thinkthey're doing what's good, they
think they're helping out by,you know, doing these things in
their minds.
But you're right, you need tohave someone representing every
step of the way.
That makes, now that you, Ithink, in the application of it,
it's turned into checklists.
Speaker 2 (39:55):
Well, here's the mandate that I must do.
But, like, if you go and Googlelike height of accessible grab
bars in an accessible bathroom,it'll say like 32 inches to 42
(40:16):
inches.
Well, there's a lot of lifethat can be lived or not lived
in 10 inches of a support.
While it's great that they'rethere, you really need the lived
experience of people and peoplelike myself, who can see beyond
their own disability and theirown needs, that can put
(40:36):
different hats on and be like oh, but if I was in a power chair,
this is the space I would need,or this is how I would transfer
.
Or if I was in a scooter, or ifI was using a mobility walker,
you need somebody that can thinkthrough hence my new title of
being an accessibility educatorlike, let's learn together.
We're in partnership, we're notlone silos.
I'm not the expert, you're notthe expert, but together we can
(40:58):
be the experts of this space andof these needs and try to do
our best.
And with that, many times we, asdisabled people are being made
to feel like we're just achecklist.
Right, I'm just a diagnosisfrom the medical world.
I'm just this.
Many different jointdeformities to the medical world
.
I'm just this many dot dot dotright.
(41:20):
This many dot dot dot right.
But in reality we are all fullyhuman, people that have full
amazing stories, that just wantto get on the trail, that just
want to go fishing, that justwant to go and do a deer hunt, a
pheasant hunt, a whatever, thatjust want to go put their feet
in the sand of a beach.
Speaker 1 (41:39):
So tell me a little bit about, then, your nonprofit
Above and Beyond With you.
What kind of things are youdoing?
And then tell me, I know youwrote a book too.
Can you kind of tell a littlebit about the book as well, if
you don't mind?
Speaker 2 (41:50):
Yeah.
So Above and Beyond With you isa nonprofit.
We're celebrating our thirdanniversary this April.
It was kind of birthed out ofmy 2020 Bush Fellowship.
Again, Above and Beyond standsfor the fact that we can go
above and beyond the ADA code.
There's nothing that says youhave to do this.
You can go beyond and actuallybe inclusive.
Speaker 1 (42:12):
Above and beyond the checklist right Correct, yeah,
okay, yeah.
Speaker 2 (42:16):
So you can be committed to the spirit of ADA,
not feeling legalistic and stuckin that checklist.
And then the with you stands toa nod to my music career,
because little kindergartners,five year olds, can't say
Udenberg, right.
Some of us adults struggle withthat, myself included, and it's
been my name for 44 years, sothe kids changed my name to miss
(42:37):
you.
And, more importantly, the wordwith is, as you know, bigger
than any of the words, becausethe whole point is that we are
making authentic relationshipstogether, we're moving forward
together, we're changing theworld together, and so that's
really the impetus and the heartof all of it.
We want people to share theirstories, we want to promote the
(42:57):
work and the accessibility.
Like, please don't tell mesomething's accessible for me.
Give me the pictures so I candetermine if it works for me, if
it's accessible for me, becausesaying something's 100%
accessible, I already know.
Like, oh, you're ableist, youdon't really know, you're not
wheeling the wheel, you're notwalking the walk, You're not
talking the talk, you're justhoping that nobody sues you,
(43:21):
kind of whatever, and that'sjust gross.
Speaker 1 (43:23):
Checklist Checklist.
Speaker 2 (43:31):
Correct.
I checked you off and I'm done.
It's your fault if you can'tsucceed and be safe in our space
.
That's kind of what it feelslike, which is gross and not
okay.
Speaker 1 (43:36):
No, exactly, and I think you know.
I'm glad you're talking aboutthis because, as someone you
know, I don't have a disabilityand I don't have anyone in my
immediate family, so I don'tunderstand it as well.
So I appreciate you sharingthat, because the whole
checklist analogy has reallykind of opened my eyes to it a
little bit more, because I thinkyou're right.
I think in our minds we justkind of oh, I'm just checking
these boxes, but you're the oneliving it, you're the one that
(43:58):
knows and we need to be with youthrough that.
So I appreciate you sharingthat.
It's been eye opening for me.
So thank you.
Speaker 2 (44:05):
Thanks.
And then, yeah, with my bookwithin my spokes, and a good
friend of mine helped me titleit.
Well, there's the backside ofme, but I'll give you the front
side, and so you know, it waskind of a nod to the whole like
spokes, because once you throwthe firefly on me, I am just
(44:26):
like an e-bike, so let's hit theground and just do this thing.
It also is a nod to the factthat I'm not stuck, I'm not
confined to my chair.
I live life between my spokes.
But you know, within my spokesthere's a whole nother story.
There's a whole.
I mean, it's just multifacetedWriting it.
I did it through aself-publishing school, you know
(44:46):
kind of vantage point.
It was tough to write.
For parts of it I had a greatcoach who was just like write
the stories that you have mentaland spiritual capacity to on
that given day.
Don't feel like you have to doit chronologically and then just
do it as a.
You know, even if it's just atherapeutic type thing and maybe
it never goes to beingpublished, maybe some of those
(45:08):
chapters don't ever become apart of the actual final
manuscript.
And so it took me about a yearto write it.
I talk about my depression.
I talk about more in depth,about, you know, those different
areas of life and then so mysubtitle is a tapestry of pain,
growth and freedom.
It's not just my life story,right, it's all the other lives
(45:28):
that are interconnected to mylife and some of the people that
come into our life.
Some of the relationships arelike super vibrant and they're
beautiful and they're heavywoven and they're different
kinds of threads and they'rethey're, you know, going through
that tapestry throughout.
Sometimes there's just reallyfaint threads.
You know, some relationshipsare just in our lives for a
(45:51):
certain period, for a certainreason, for a certain depth of
who we are, and then when youflip that tapestry over, it's a
hot mess.
There is knots and and threadsand broken things and you know,
like that's kind of my life.
And the part that I love themost about my book is that I
have two good friends I talkabout in there, megan and Jamie.
(46:11):
And it's so funny becausepeople will be like, megan, I
read your book, it's so great,and she'll be like I don't have
a book, it's Jenna's book.
I don't have a book, it'sJenna's book, and I'm like, no,
megan, it's give me your booktoo.
I mean you're in there for achapter plus, but you know, and
then my good friend Jamie, whoalso has the same diagnosis I do
and has been a manualwheelchair user for her whole
(46:32):
life.
She's kind of my disabilitymentor and best friend and all
the things, but yeah.
So now I have local people thatare like when is Jamie coming
to visit again?
Speaker 1 (46:44):
Can she?
Speaker 2 (46:44):
can she come visit us at the library?
We're fangirling, we want tomeet this friend, and you know,
that's the whole point.
Like that's the added benefitof being an author, like sharing
this journey with people thathave made my life greater and
deeper and more meaningful andare there to support and the
rider dies.
Speaker 1 (47:01):
Fantastic.
This has been awesome for me.
So I really I'm so glad we gotto talk.
Just, you know it does good forme.
I mean, it uplifts me hearingyour story and who you are.
There's the question I alwayslike to ask, because this is
well, it's an adventure podcast,but for you, jenna, what does
adventure mean to you?
Speaker 2 (47:20):
Oh, you even prepped me for this question too.
I, jenna, what does adventuremean to you?
Oh, you even prepped me forthis question too.
I was like this is a good one,but I'm just like my students
and I didn't do my homework.
No, adventure for me isstepping out of your comfort
zone, so that could be aphysical thing, a mental thing,
a spiritual thing.
(47:40):
All the different ways that weshow up right, different food,
can be an adventure.
Learning a new language can bean adventure.
Coming on a podcast can be anadventure absolutely right and I
would say something that putsmore wind back in your sails,
like it just helps you feelhuman, because I don't know if
any other parts of the animalkingdom get that adventure,
(48:01):
except for you know deer runningacross the road and trying not
to get hit by these movingobjects, but that seems more
fearful than adventure.
Speaker 1 (48:10):
Just trying to survive here.
Speaker 2 (48:12):
Right, but fear can be a part of our adventures.
Speaker 1 (48:17):
What does the future hold for you?
Where do you, where do you wantto go with this?
What's kind of what are youthinking?
Moving forward?
Speaker 2 (48:21):
I'm excited for my nonprofit to continue to grow.
I'm excited for our message tocontinue to get out there and
make impactful change andsustainable change.
I'm excited for agencies andorganizations and business and
industry to start and continueto figure this out.
(48:43):
I am knowing like, let's behonest, there's lots of upheaval
and uncertainty in our world.
So figuring out how do wecontinue this work in meaningful
and authentic ways, no matterwhat comes at us to knock us out
, what adversities, what otherextra obstacles we're going to
have to overcome to just makethis world a better place and
(49:06):
keep doing the work and keepfighting the fight.
I feel like there's another bookin me, but I'm not quite sure
what that will look like.
I've kind of dabbled with thefact that I would love to write
a children's book, because Ifeel like so often those stories
aren't shared and there's somany kiddos going through
medical things and disabilitiesand I mean disability can be
acquired at any age, any time,any reason, and we're the most
(49:29):
that's in the nonprofit world orpersonal, and I'm excited that
(49:50):
people are fascinating, right.
So just having thoseconversations and slowing down
in life to get to know eachother A hundred percent.
Speaker 1 (49:54):
Couldn't agree with you more, jenna.
This has been fantastic.
I love what you're doing.
If people want to follow along,get to know you get your book,
where can they do all that?
Speaker 2 (50:03):
Yeah, so check out our website
aboveandbeyondwithyouorg.
There's a link to buy my bookthere.
My book's out on Amazon orBarnes Noble.
Wherever you buy your books,you can probably find it,
especially online, and you canconnect with us on Facebook,
Instagram and LinkedIn.
Just looking for Above andBeyond With you.
Speaker 1 (50:19):
Above and Beyond with you, above and Beyond with you.
Awesome, love it, jenna.
Thank you so much for coming onJourney with Jake.
Speaker 2 (50:26):
Yeah, thank you so much, Jake, this has been
fabulous.
Speaker 1 (50:28):
A big thank you to Jenna Udenberg for joining me on
the show.
I learned so much from her andI'm truly grateful that she's
out there not only livingadventurously but also being
such a strong advocate for thedisability community.
If you'd like to learn moreabout Jenna's nonprofit Above
and Beyond With you, be sure tovisit her website at
aboveandbeyondwithyouorg, andremember that's the letter U at
(50:50):
the end.
You can also follow her onInstagram at
aboveandbeyondwithyou.
Thanks again, jenna, forsharing your journey with all of
us, my friends.
This is exactly why I lovedoing this show and I'm so
thankful that you're herelistening and being part of the
journey.
If you're enjoying Journey withJake, consider leaving a rating
and review on Apple Podcasts orSpotify.
(51:11):
It would mean a lot to me.
But hey, no pressure, I'm justhappy you're here.
Next week I've got anotherawesome episode for you with
Zara Atwater.
Zara packed up and hit the roadacross Australia in her van and
she's gotten some incrediblestories and life lessons to
share.
You won't want to miss it and,as always, remember it's not
always about the destination asit is about the journey.
(51:33):
Take care, everybody.
Thank you.
There's a powerful saying within the disabled
community nothing for us withoutus.
My guest today, jenna Udenberg,embodies that spirit through
her advocacy, community serviceand the incredible work she's
doing with her nonprofit.
Jenna has used a wheelchairsince childhood, but that has
never held her back from seekingout adventure.
With the help of her realmobility Firefly, she's out on
(00:21):
the trails, discovering newpaths and living life to the
fullest.
Get ready for an inspiringjourney with the unstoppable
Jenna Udenberg.
Welcome to Journey with Jake.
This is a podcast aboutadventure and how, through our
adventures, we can overcome thechallenges of life that come our
way.
While I expect you will learnsome things about different
adventures, this show willentertain you.
(00:43):
Each episode will featuredifferent guests or guests as
they share experiences andstories from the different
adventures they have been on.
Not only will you beentertained, but you'll also
hear the failures and trialseach guest faces and what they
have done or are doing toovercome the hardships that come
their way.
My goal is to take each of uson a journey through the
(01:03):
experiences of my guests, withthe hope that you'll be
entertained and inspired toovercome your day-to-day
challenges.
After all, it's not all aboutthe destination as it is about
the journey.
(01:29):
Hello everybody and welcome toJourney with Jake.
I'm your host, jake Bushman,and I'm excited to bring you
another fantastic conversationToday.
I had the pleasure of speakingwith Jenna Udenberg.
Jenna has been in a wheelchairfor most of her life, but that
hasn't stopped her from livingadventurously and being a
powerful advocate for thedisabled community.
It was truly an honor to speakwith her.
(01:49):
Before we dive into thatconversation, just a few quick
reminders.
Journey with Jake is now onYouTube, while podcasts are
usually an audio experience.
If you'd like to see me and myguests as we chat, head over to
YouTube and search for Journeywith Jake podcast.
Be sure to subscribe to thechannel and hit that like button
.
I'd also love to connect withyou on Instagram.
You can find me at Journey withJake podcast.
(02:11):
Leave a comment, send me a DMor give me a follow to check out
clips from the show and seewhat's going on in my world.
And one more thing Journey withJake is proud to be part of the
Podmatch podcast network.
If you're looking for othergreat shows to check out, visit
podmatchcom forward slashnetwork.
Now back to Jenna.
She may be in a wheelchair, butthat doesn't stop her from
(02:33):
being active in her communityand exploring the world around
her.
If you enjoy this episode,you'll definitely want to check
out episode 30 with Sean Delaney, who shares his own adventures
while managing life with kidneyfailure.
With Sean Delaney, who shareshis own adventures while
managing life with kidneyfailure.
All right, let's jump into myconversation with Jenna Udenberg
.
All right, I have JennaUdenberg on the call with me
today.
Jenna, welcome to Journey withJake.
Speaker 2 (02:54):
Yeah, thanks for having me, Jake.
Speaker 1 (02:55):
Yeah, this is fun.
I was telling you earlier, likeyou know, today kind of a grind
, kind of just a day, but thisis what I love love the fact
that I get to sit back, talk tosomebody, somebody who likes to
be adventurous, somebody who hasa story to share, and I love
that.
That's what I love doing thispodcast, because I get to hear
from people like you.
So I'm excited to hear yourstory Before we dive into kind
(03:17):
of what you got going on,background information, kind of
where you from, where you grewup, that sort of thing, if you
don't mind.
Speaker 2 (03:22):
Yeah, great.
I am from Two Harbors,minnesota, so on the beautiful
north shore of Lake Superior,born and raised, went to
university in Duluth and got adouble degree in music education
, both vocal and instrumental,and then I went back to a
different local college for mymaster's of education with tech
integration, did the musicteaching gig for about 19 years
(03:47):
and then the pandemic hit.
So now I'm on a disabilityretirement and that's been an
interesting journey.
During that time, I was a 2020Bush fellow.
That was exactly the greattiming of big life pivots and so
now I'm an accessibilityeducator, disability advocate
activist, started a nonprofitcalled Above and Beyond With you
(04:08):
, became a published author,write a bi-weekly column for
Lake County Press, which is alocal newspaper in the area.
Also, during the pandemic andmy Bush fellowship, I fell in
love with using a real mobilityFirefly, which is most of my
adventures come from.
So lots to share with you.
Speaker 1 (04:27):
A hundred percent and I'm part of me.
I'm like I don't even know whatshe's talking about here, with
half of this stuff the Firefly,you know.
So we're going to, we're goingto get into all that.
You talked about the Bushprogram, that you did Bush
fellowship.
How do you say it?
What's the correct way?
Speaker 2 (04:40):
Yep Bush fellowshiphip.
Speaker 1 (04:42):
Bush Fellowship.
What is that exactly?
What is a Bush Fellowship?
Speaker 2 (04:46):
So it is for leaders in Minnesota, north Dakota,
south Dakota and the 23 tribalnations in those geographical
areas.
They invest in 26 human beingsevery year and it's really just
a way of developing your ownleadership style.
Whether it's that you're tryingto get a pre prescribed like
(05:07):
certification, or going for abachelor's or master's or
doctorate, it's a way of youinvesting in yourself.
So there's a lot of it that'sabout your self reflection, your
your self care, your soul care.
You know however you want touse it.
You can also use it as likesomething that you prescribe for
yourself which is the way thatI went, and really the sky's the
(05:27):
limit Like you can use it totake a sabbatical.
So if you want to use that topay your bills and take some
time off of work and like,invest in yourself, take care of
burnout, take care of medicalstuff that's inhibiting you from
being the leader that you canbe, that you can be.
It's just amazing and, as youcan imagine, it's highly sought
after.
When I did it in 2020, it was$50,000 a year for up to two
(05:52):
years, and now I know they'veincreased that amount and
they've also decreased thedifferent levels that you have
to go through for theapplication process.
But I want to say they havelike 700 to 1000 people apply
every year.
Once you're a fellow, you'realways a fellow.
It was an amazing opportunity.
It got me through the pandemicand huge life pivoting changes.
Even just going on theirwebsite even if you're not from
(06:13):
those geographic regions justgoing to their website it's
bushfoundationorg and then justlook for the Bush Fellowship,
just answering for yourselfthose application questions is
an amazing tool in itself to seewhere you're at, where you want
to go.
Are you dreaming about things?
And their tagline is thinkbigger, think differently.
So it really makes you get outof your everyday mundane grind
(06:37):
of Mondays because we'rerecording on a Monday Right and
be like whatever day of the weekit is, whatever season of life
I'm in.
Where am I at, where am Istruggling?
Where can I be doing better andwhere can I focus?
Speaker 1 (06:53):
and refocus these energies and priorities on
Amazing.
Okay, yeah, I'm curious to seewhat some of those questions are
, what the application processis like, just like you said, to
kind of bring me out of my ownshell sometimes.
I mean that might beinteresting, just to kind of get
a feel for it.
Speaker 2 (07:06):
Yeah, absolutely, and then that led to me becoming a
2025 Shannon Institute leader,and so that one is actually open
for the whole nation, so youshould check that one out too,
that one you pay for instead ofbeing invested in.
But still, so far, I've had theretreat and heading into our
first virtual retreat thiscoming weekend.
So far, I've had the retreatand heading into our first
virtual retreat this comingweekend, but that in itself has
(07:27):
been amazing to get togetherwith other leaders and similar
journeys and finding your people, finding your support systems.
Speaker 1 (07:33):
That's awesome, Finding your people, finding
your support system.
Grew up in Minnesota Parents,siblings.
What do you got going on there?
Speaker 2 (07:41):
Yeah, both my parents are still alive, they're in
their early 80s.
I have three older siblings andolder by a lot my brother's 16
years older, and then I have twosisters, 15 and 12 years older.
So they always love to tell methat, you know, I always say
that I was the oopsie andthey're always like, no, you
(08:02):
were the planned one and I'mlike I'm sure it's somewhere in
between those two potentially.
But yeah, so it was great.
But it was different growing upbecause, as you know, I was
three when the two oldestgraduated from high school and
then I was seven when the nextone graduated.
So in some ways, yes, I havethree older siblings, In some
ways I was kind of a lonelypetunia, kind of an only child.
(08:23):
And then you add my disabilityat age seven, or my diagnosis at
seven and in a wheelchair atage eight, and that also just
changed the dynamics of of life.
Speaker 1 (08:33):
For sure.
And let's let's dive into thata little bit your disability and
kind of what went on, becauseyou know, sitting you and I
talking here, can't tellanything's going on with you,
you can't see the wheelchair,you know, know.
So, hey, everything looks fine.
But I know earlier you kind ofmentioned, you know, about
accessibility and things likethat what, yeah, what's the
diagnosis?
What happened?
Kind of give me the scoop.
Speaker 2 (08:52):
So short Reader Digest version is I was seven
years old, getting ready forschool one morning, hanging out
in the lovely golden rod castedbathtub because you know the
late 80s, you still have theretro of the 70s was playing in
the bubbles and I'm sure I wasscrewing around and all of a
sudden my one knee floated atthe top of the bubbles and it
was like bigger than the size ofa softball.
(09:14):
And then I let my other kneefloat up and that was like a
typical little girl, you knowtennis ball or smaller size.
And what does any seven yearold girl do?
You screen for your mommy?
And so from there I went to adoctor and the first doctor said
oh, you probably have water onthe knee.
And my dad, who did volunteerambulance stuff, was like my
(09:35):
seven year old daughter is notan athlete, didn't have a big
you know injury or anything likethat.
So then we got a second opinionin our small rural town and
thankfully we had two differentdoctors right, being small and
rural, and he took one look atme and he said I think she has
juvenile rheumatoid arthritis,so we're going to send her to
Duluth.
And so I saw a rheumatologistin Duluth and he said well, I
(09:59):
can't officially diagnose youbecause that's when Lyme disease
was new on the scene, which isa tick-borne disease.
So I had to go down to MayoClinic in Rochester, minnesota,
and they had to run me throughall of the not fun tests that a
little girl could imagine.
And seeing your dad kind of gethot and bothered and standing
(10:20):
toe-to-toe with a radiologistwho is like you're going to
drink that barium and you'regoing to like it and you're
putting me behind schedule andyou need to do this thing and I
don't care if you like it or not.
And then my dad stepped in andwas like you will not talk to my
daughter that way or you willbe drinking this barium.
Shout out to my dad Love my dad.
He would not like me tellingthat story just because you know
.
But you know, for all the dadbears out there, like, keep
(10:42):
doing you, keep protecting yourkids.
Yeah.
And then it was hard because,like for those that have been in
the medical world, let alone atRochester and other medical
centers, it was hard as a littleseven-year-old, like A, they're
using weird medical jargon andwords and talking about me, not
with me, and then a lot of themEnglish was their second
(11:03):
language, not with me, and thena lot of them English was our
second language.
So then also trying to getthrough the thick accents and
like I don't, I don't even knowwhat you're saying, let alone,
like I said, those big medicalwords.
But specialist after specialist, they just kept giving me
stickers and lollipops.
So hey, what the heck.
But then trying to read theroom of like wow, mom and dad
(11:26):
are super sad and I don't knowwhat's going on.
I just knew I was in pain, Iknew something wasn't right, you
said your knee was big.
Speaker 1 (11:30):
You know, you noticed in the bath oh man, my knees
like big At that point too, wereyou like not able to walk on it
Like what kind of?
What was kind of the situationthere?
Speaker 2 (11:39):
I don't remember a ton Like the bathtub is the most
vivid long-term memory for me,but it was hot, it was in pain,
it was inflamed, it you know.
I'm sure I was walking with alimp because I can't imagine a
knee almost twice the size.
Yeah, am I a disease?
You know, as a kid you don'tknow any different.
But according to the medicalworld, my disease progressed
(12:01):
very rapidly because within ayear of being diagnosed I was
using a rental wheelchair, amanual wheelchair.
Speaker 1 (12:07):
What was the official diagnosis then from Mayo Clinic
?
Speaker 2 (12:10):
At that time it was juvenile rheumatoid arthritis.
Speaker 1 (12:12):
Okay, just juvenile rheumatoid arthritis.
Speaker 2 (12:14):
Okay yeah but throughout my journey it wasn't
until about 2018 when I was backdown at Mayo for some other
medical stuff they finally cameout and said well, technically
now we call it juvenileidiopathic arthritis because it
never followed the diseasepattern of, like the older
people, getting rheumatoidarthritis.
(12:36):
And I'm like well duh, I couldhave told you that from my young
age, because it was like whatthe medical book says a plus b
equals c and my body's like qtimes the square root of r times
the T.
Speaker 1 (12:50):
Totally, totally different.
Speaker 2 (12:52):
Yeah, and they'd just be like Jenna, we just don't
understand, we gave you this, itshould be doing that.
So then it was like number one,you have, you know, all your
peers and I had great friendsand I had great classmates and
all the things, but there werestill bullies, there were still
people that just didn't get itright.
So I was always that outsiderin a lot of spaces.
(13:17):
And then you would go tomedical and I'm like, oh, these
are my people.
And then they'd be like you'reodd and unique and different and
what so I'm like where do I fit?
Like this is crazy.
Speaker 1 (13:22):
Yeah, so there you are as a seven, eight year old,
and now you're in a wheelchair.
Seven, eight year olds usuallylike to be active, like to be
moving around.
Do you remember what that waslike being confined to a
wheelchair that early on?
Speaker 2 (13:36):
Not really, but growing up I was a tomboy.
So I was, you know, out fishingwith my dad and brother and
grandpa and older neighbor andusing the snowmobile out ice
fishing.
You know, have to be a goodNorthern Minnesotan, come on,
you know, bird hunting, with dadgoing up to the shack.
I never, never, went deerhunting, but enough to hang out
at the shack and you knowunderstand some of those life
(13:58):
things up here and they stillwere able to get me in and out
for, you know, quite a while.
But then it the pain just tookover and the lack of mobility
and just the rigmarole of allthe work right.
So I became way more of aperson that was stuck inside and
, you know, for a while wasstuck in bed.
When I was 15, I went through adepression and had a suicide
(14:20):
plan of like I'm just done withthis, and my plan was to, you
know, keep some of mymedications and try to overdose
or try to throw myself down twoflights of stairs because we had
a split level entry house.
So in my suicidal ideation Iwas like I'll just go down the
stairs, I will log roll to getto my dad's gun cabinet, I will
(14:41):
somehow, you know spider-man upto the top of the cabinet to get
the key to that, like none ofit in the logical world makes
any sense.
But when you're in those spacesit doesn't matter, you don't
think logically, at least.
For in my story, you know, Ijust cried out and said no,
because I know that I'm createdfor a bigger purpose and I know
that there's something else inlife to do and to be and this is
(15:04):
just a really crappy time oflife and at some point the pain
will go away, mobility willreturn, life will have, you know
, better, thriving, better,whatever word you want to put to
it.
And that's where my faithbecame a huge part of who I am
and how I got through things andhow I overcome things and push
around things.
(15:25):
I mean, I don't overcome mydisability there's no such thing
as that but I thrive with, Ilive with disability there's no
such thing as that, but I thrivewith, I live with and it's a
part of me.
So you can't separate JennaUdenberg disabled from Jenna
Udenberg, all the other labels.
It is me, I am my chair, mychair is me, but I'm not defined
by other people'sinterpretation of that.
(15:46):
So I'm not bound to a chair,I'm not stuck in a chair, like
my chair gives me freedom.
I get to do all these amazingthings.
And then you strap the realmobility on me and I'm like you
know it's a third wheel electricattachment.
Yeah, love going to Itasca StatePark.
I figured out there how to likepush myself and then stay in
(16:06):
coast mode and I got it up tolike 15 to 16 miles per hour of
just coasting on paved trail andjust you know, being safe, of
course, if real mobility islistening.
But to just experience that likeI figured out how to yodel,
because it was really fun to godown some of those big twisty
hills, like and be in creationand nature again and be have the
(16:30):
big towering pines over you.
And you know, I remember goingup to an inland lake with a new
to me friend at the time and wejust like went up this little
ramp to this little uh kind ofembankment type of a thing.
You're still up in the trees ona, on a bank, looking over a
smaller lake and I was like, wow, I haven't smelt pine like this
(16:52):
in like forever.
And she just looked at me likewhat are you talking about?
But you get to walk on all thetrails and you can go take a
walk in the woods and you can godo all these adventurous things
.
I can't unless somebody makessomething accessible.
Those were like imagine youknow senses all the way back to
my childhood of like I used toclimb trees like that or swing
(17:14):
in trees like that.
Speaker 1 (17:15):
I want to go back to that time then, when you were 15
and you're struggling andyou're inside a lot and you're
depressed, but you said you gotover it.
What do you think it was?
How did that?
How do you get over that?
Because I always I like to askpeople that question, because I
know when you're in the middleof those battles and it's tough,
it's hard to see how to getpast it.
When you're in it For you andyou talked about your faith a
(17:38):
little bit what was it for youthat really pulled you out of it
?
Speaker 2 (17:41):
Yeah, so definitely my faith.
And then I'm trying not to tellsomeone else's story, if that
makes sense.
So that's why I'm kind ofdancing around words.
A person close to me had ahouse fire while I was in that
time of life and I knew that Ineeded to find that person and
be there for them, and so thatwas really the impetus of like I
(18:05):
need to suck it up.
And, yes, pain is going to suck, but I'm used to pain and it's
important for me to get back tomy regular life so I can be in
connection with this person andkeep tabs on them, as their
whole life was, you know, justuprooted.
And then for me too, my suicidedepression time was around the
(18:26):
Oklahoma City bombing time, solike it was like literally the
day after I just finally criedout and found my faith, I was
like, wow, okay, there arebigger things happening in life
and it doesn't discount the crapthat I was going through, it
doesn't for sure.
All of the different types ofpain and isolation and hurt and
whatever.
But those are the two big pivotWell, three big pivot points
(18:49):
that got me through that.
And then there was differenttimes of, you know, I don't want
to say minimal depression,because depression is never
minimal, but wasn't as seriousas that time of life, but
usually medically induced,usually isolation related and
usually it's always been, youknow, your chosen family, right?
Those friendships, those rideor die friends, those people,
(19:10):
people that are like I don'tgive a crap that you don't
answer my phone, I'm gonna comeknock on your door and you don't
have to be the hostess with themostest, we're just gonna sit,
I will just do life with you.
You don't entertain me, wedon't have to do anything, but
we're just living life together.
Finding those people, investingin those relationships and
(19:30):
doing the things you need to dois really where it's at.
Speaker 1 (19:33):
Wow, I love that.
Yeah, I think you know havingpeople in your life who affect
you and mean so much to you thatare just there to be with you
they don't, you know, there's noother reason for it just to be
there with you.
I love that and I love the factthat you found someone to serve
.
I think that it was a, it was abig thing and I know I know
that because it's, it'sstruggled.
(19:54):
When you're going throughthings, it's just like you can't
see out of it and then, yeah,maybe you have to help somebody
or maybe you know people havethings worse.
Everyone, someone somewhere hassomething going on, worse for
sure, and but it's hard to seethat when you're in the middle
of it.
So I appreciate you sharingthat and I'm glad you had that
faith and you pushed, pushed on,because you've been doing.
You've done a lot since then.
You, you, you get out there inyour adventurous.
(20:15):
You talked about the what waswhat you call it?
the rope, the remote, whateverthe real mobility fire real
mobility, real I gotta writethis down real mobility.
Well, I want to talk about thatin a minute before we dive into
all that.
What is it about?
About music how did you getinto music?
Speaker 2 (20:31):
So my two older sisters and my brother the
outdoorsman had no time formusic.
He tried football for a weekand went.
It interferes with hunting, I'mout.
So yeah, he was definitely nota musical kind of guy.
My sisters, however, one was atrumpet player and one was a
flute player, and knowing myhistory as a tomboy, you can
picture that I did not want thatdainty little flute.
So I'm like all right, I'll trythe trumpet.
(20:54):
In sixth grade my right armstarted to fuse, naturally by
the arthritis, and typicallypeople play you know, the bent
arm right-handed trumpet player.
But I couldn't.
So I started playingleft-handed and my band teacher
at that time was a prettyworld-renowned trumpet dude for
being in rural Minnesota and heI'll always remember the band
room, even though it's no longerthere, and that day because
(21:17):
he's like there is no such thingas left handed trumpet players
and I was like, well, there isnow.
So I'm a Newtonburg, we arestubborn, stoic, scandahoovian
people and it's like you tell mesomething I can't do.
I'm either gonna show you thatI can or I'm gonna do something
completely different to blowyour mind in a different way.
(21:38):
So I became a left handedtrumpet player and I had a new
teacher come in eighth grade andshe was a spitfire and she
really inspired me to become amusic educator and so she saw me
as a whole person.
I wasn't like this disabledstudent.
She never made me feel guiltyfor having to do other things,
(21:58):
you know, like hey, let's takeyour personal car and take you
up to the band competitions, oryou know, all these horrendous
things would never happen intoday's world because of
liability and safety and neverhappen in today's world because
of liability and safety and allthe things.
But growing up in the 90s tolate 90s life was different.
But I'm very indebted to her.
(22:20):
She's a great friend now.
But life was hard right Becausewhen I put that trumpet to my
face, especially when I becamemore of a lead trumpet, when her
and my high school banddirector really believed in me
and saw the musical talent thatI had and the love of it that I
had.
You know they overcomemountains to make sure that I
could be in their program andthey were not going to let other
(22:43):
teachers, other communityleaders tell them that we
couldn't.
In order for me to get to theband room in high school it was
down by the boiler room whowould put a music room next to a
boiler room, that you know thatused wood chips, of all things.
So you know lots of carcinogens, lots of allergens, you name it
(23:04):
.
And in order for me to get downthere it was a whole flight of
stairs and so I would literallybe put on a stair tracker.
So kind of picture what a trackchair like at the state parks
look like.
But instead of it being niceand having the chair attached,
it was literally just thatrubber mechanism of the track
(23:25):
almost looked like a militarytank.
And then there was just like aT of metal that my wheelchair
would roll back onto and likeliterally can't even figure out
like a good description.
I need to work on that.
But like these two pinsliterally held my whole body
weight, my wheelchair weight,onto this track chair not
(23:48):
tractor, sorry, stair tracker.
And then an older lady, likeprobably one of the oldest
paraprofessionals and she wouldmake these comments herself and
she also had carpal tunnel inboth wrists would have to lift
me, my chair weight and the, thestair tracker weight up and
then slowly guide it down, as itwould, you know, be like, be,
(24:10):
like, oh, we're level, and youget down a stair and it just be
kind of like, not kind of likewhen you're at a stoplight and
you see everybody's blinker Idon't know if you're weird like
me and it's like oh, we match,we match, and now we're off.
That's exactly what happenedwith the.
With the track.
It'd be like, yeah, we're on,and now we're not, and now we're
really not and now we're likecompletely off.
(24:31):
Well, I ended up gettinghairline fractures in my femurs.
So at age 15, I was like goinghome one day and I'm like, look,
mom it's a miracle, I can movemy knees now.
And we went to the orthopedicsurgeon and he's like you
shouldn't be able to do that,we're going to put you in for an
arthroscopy.
So they threw me I shouldn't Italk odd, sorry about that, but
(24:55):
you'll get used to that, right.
And so, anyways, they threw meon the surgical table, right.
Just, you know, no prep work,no, nothing, just throw you
right in.
They woke me up after like anhour and I didn't know any
different.
Right, I'm like I can do this.
(25:17):
This is like nothing.
And they woke me up and they'relike um, honey, you have
hairline fractures and like thepain of moving in a hairline
fracture was less than havingthe pain of my knees completely
fused by my disease.
And he's like at age 16, wehave to give you knee
replacements, but we don't havethe parts to do it today, so you
get to stay in the hospital andwait for three days.
Well, amazon gets us the parts,which you know there wasn't
Amazon back in 1996.
Yeah, and then from there I wasdoing medical surgeries every
(25:40):
six, nine and 12 months, becauseonce one joint would kind of
crap the bed, then the opposingjoint on the other side would
crap the bed and so I like nevertruly healed From 1996 to 2002.
I was having joint replacementspretty much nonstop, yeah.
So there was, there was just alot.
So music was important.
It made me feel like everybodyelse.
(26:01):
It gave me a space to justthrive and shine.
It also gave me a spot,especially if you know arrogant
lead trumpet players were adifferent breed.
It was just a space where Icould get the frustration out.
Speaker 1 (26:13):
It was your out.
Speaker 2 (26:14):
Yep.
Speaker 1 (26:15):
And then you went on to have a career in that, I mean
, you taught music education.
So were you teaching?
Was it high school, middleschool, college?
What were you teaching for youreducation?
Speaker 2 (26:24):
I'm a weird one and I love middle school.
Beginning band was my thing,middle school jazz band.
I worked at a parochial schoolfirst thing out of college and
then I moved back up to myhometown of Two Harbors and was
beginning band and then becamegeneral music teacher and then I
also worked at our charterschool for also beginning band
and then some different thingshappened in the district and so
(26:46):
then I had to go up to aneighboring town called Silver
Bay and be their choir teacherand general music teacher and
then, near the end of my career,I was able to start an adaptive
music program, which was trulythe highlight of my career and
just such an amazing time tosupport kiddos with disabilities
and their families and apply,you know, their IEPs and all the
(27:09):
things that they need, all thesupports they need, working with
our speech language pathologist, and it was just amazing.
I wish every school could havethat and I wish every program
could come alongside all of ourlearners and give them what they
truly need to be successful andthrive in all the different
settings.
Speaker 1 (27:27):
What does it do for them?
Like when you see, you knowkids who are struggling or kids
who have disabilities and needthe help, and you give them that
help and you have theaccessibility form.
What does it do for them?
What do you see in their, theireyes, or what do you see?
Speaker 2 (27:39):
Yeah, it was awesome because so a lot of our kiddos
primarily were on the autismspectrum or were non I don't
like using this term because Iknow it's old but I can't think
of the right one but nonverbalare different, different ways of
expressing what they needed.
The biggest story of it is wewere so.
(28:00):
What we would do is we wouldhave all of our classes before
it, so adaptive music would bebefore general music and then I
have those kiddos in generalmusic because there's multiple
music teachers.
But then we could take likethree or four weeks and prepare
them for what those activitieswould be like.
So maybe something that mightbe slightly triggering or a
sensory issue after a month ofgetting more used to playing a
(28:23):
game with a ball or having theparachute in the room or you
know, just easing into some ofthose experiences.
Then after a month or whatevertime frame they needed that to
be.
Then when they came to generalmusic with all of their general
peers, it was amazing to watchtheir general peers go.
Jake can play the ball gamewith a parachute.
(28:46):
I can play pass the pumpkinwith my other friend that I've
never done whatever with.
But the most touching and mostimpactful story was we had an
open house for families so theycould see what we'd been doing
all year.
And some of the kids' favoritesong was Skin a Marenka, dink a
Dink I don't know if you knowthe song and in it you end up
(29:07):
singing I love you, up singing,I love you.
And so one of our kiddos, whohad never spoke, never sang,
turned around to mom and dad andgrandma and sang I love you.
And they lost it because theyhad never heard the voice of
(29:29):
their child tell them that theylove them.
So the power of music, thepower of getting over ourselves
to meet the needs of allstudents, of all people.
Speaker 1 (29:41):
Yeah, that's beautiful.
That is got me all choked uphere.
That's amazing.
I mean right, wow, wow.
What an experience to see that,to hear that.
Speaker 2 (29:52):
Yeah, and I didn't know what was going on.
I'm like, why are they crying?
What's going on?
And then the coolest part isthen I'd see grandma for years
to come because she worked atone of our local fast food
drive-thrus and so I'd be goingthrough and then I'd get her and
she'd be like, and she wouldjust be bawling like just giving
me my McDonald's through thewindow and I'm just like I'm so
(30:12):
sorry.
Like I'm not sorry, but I'msorry, I'm making you cry at
work.
No, you know there's.
We just don't know the impactof us just doing our passionate
work enough.
But when those stories happen,we need to share them Because
then that inspires other peopleto have action.
Like, let's not just sharestories to be inspired, it's
(30:32):
that action step.
What's the next thing?
What are you doing with thatinspiration?
Speaker 1 (30:38):
So we talked about.
You know this is an adventurepodcast and I know we've talked
a lot about what you've beengoing through and music, and to
me it's all adventurous.
You've been set on your when,you know, I always put on my
question you know what's theadventure we're going to talk
about.
He said my adventure is thatI'm in a wheelchair and I grew
up in a wheelchair and it is.
It is an adventure because ofthe things you have to go
through and the things youaccomplish.
But we talk about Rio Mobility,firefly 2.5, was that your
(31:03):
mobility device, your wheelchair?
What did that allow you to do?
Tell me about it.
What is it and what kind ofadventures has it allowed you to
do?
Speaker 2 (31:12):
Yeah, so I'll make sure that I send you lots of
pictures.
Unfortunately, the cover of mybook you just see my backside
instead of the front.
So I'll make sure that you seethe front side of what the Rio
looks like, or Firefly.
Yeah, so you have to haveattachment mounts on your
wheelchair.
So thankfully I have a verymechanical brother in law that
could help me with the initialsetup of it.
(31:33):
And then it just really haslike clamps that go over them.
So unfortunately andfortunately, I have to have a
non disabled or at least lessdisabled than I am person that
can kind of lift it over thosebrackets to then get it settled
right, so the locks will lockdown.
But essentially what it does isit just takes my manual
(31:53):
wheelchair and pop it into awheelie and then the front
mechanical wheel is now becomewhat my casters are.
So the casters are just upfloating in the air, and so it's
my back two wheels and then thefront wheel of the Firefly, and
the batteries typically lastabout 12 to 15 miles.
So of course, with my BushFellowship money I also got a
(32:14):
another battery, because once Igot a taste of freedom it was
like 12 to 15 miles is notenough because you can only go
six out and then you have tohave enough battery to come back
.
Adding the Firefly adds someextra weight.
So, yeah, no, not going to pushthat up some hills.
No, it has been absolutely lifechanging, and not only in just
the adventures.
And getting the wind in my hairand having independence, like
(32:36):
that was another big thing waslike hey, we're in the middle of
the pandemic, I'mimmunocompromised.
I've never had to divulge myinvisible disabilities.
I had never seen me as weak orneeding those supports in those
different ways.
So even like the thought ofhaving people stand over me and
pushing me and breathing down onme and I mean just the world we
(32:58):
lived in at that time andhaving to be more medically
conscious of that than than mostpeople man finding like these
trails and stuff, dude, it'slike the best well-kept secret.
I'm like otherwise I'd be likestate park what?
Why do I care about state parks?
And I'm like, bring me to yourpeople.
I want all state parks to beaccessible like as best they can
(33:20):
.
Like we get the fact that youcan't take rugged terrain and
always make it whatever withoutindustrializing it.
And we don't want.
I don't want that.
I can speak for myself, being uphere on the Gitche Yami trail,
being out, like I said, out inItasca state park, going on the
Mesabi range trail.
Now it's like I plan all mysummer vacations based on trails
and like, more importantly, whowill go with me?
(33:41):
So the the network of peoplethat that has opened up has been
fantastic and when I'm out onthe trail people actually look
at me in the eyes.
Bikers and walkers and hikersare like some of the coolest
people because they're like hey,look at you, you know, and like
they might not always say thethe best known things, right,
(34:02):
but by and they're just likethis very welcoming people group
that is like hi, how are youwhen?
It's like you go in a store andeverybody's like looking down
at me and like, oh, do we talkto her?
Do we ignore her?
Do we engage?
Do we not engage?
But everybody on the trail islike hey, hey, and it's just
(34:22):
like I'm an introvert.
I don't know how to deal withall these people saying hello
all the time and now I'm justlike I'm an extrovert on the
trail.
Hi, how are you?
Great weather, blah, blah blah.
Yeah, it's just cool being inother communities now, like
literally communities, but alsocommunities of different people,
and, yeah, just awesome.
Speaker 1 (34:44):
Do you have a favorite?
Either state park or trail, orsomething that you've been on,
or one that just has specialmeaning to you, for whatever
reason?
Speaker 2 (34:51):
Yeah, that's a great question.
Like I said earlier, itascaState Park, for sure, their
paved trails are in primocondition.
You get to see so muchdifferent flora and fauna.
There's so much other naturalthings up in that neck of the
woods in Minnesota.
Lots of hills and twists andoff you know different things
(35:12):
and also great tourist centersand visitor centers that meet
your accessibility, bathroomneeds and you know just all the
basic human needs, right.
But also I would say the gitchegammy trail here on the north
shore has been the most amazingfor me because all of my years
driving from two harbors tosilver bay, longingly looking
(35:34):
out like what is that about overthere?
How can I get on that bridge tosee Lake Superior from that
view, will I ever get to?
And then now, knowing a lot ofthe leaders of the Gitche Gammie
Trail Association and gettingto know that nonprofit and
learning how nonprofits comealongside Minnesota DNR to make
(35:56):
things more accessible and tomake our trail system, and it's
just been a wealth of amazingrelationships and building of
community that now I'm like, hey, I can drive by here and I can
wheel over there and I can be onthat bridge.
So some of the bridges I callmy bridge, which you know.
They're not my bridge, but inmy little world they're mine.
Speaker 1 (36:16):
They're your bridge.
Speaker 2 (36:17):
They can be your bridge too, all right.
Speaker 1 (36:20):
Perfect.
Thank you Appreciate that.
I've never been to minnesota,so you know, maybe I need to
make a trip so gotta come it'swhere yeah, absolutely.
You talked about theaccessibility and and I like
what you said.
You said you know you get it,that something.
You know places have roughterrain or whatever and they
can't.
Everything cannot be accessiblelike that as far as you know
paved walkways and stuff.
(36:40):
But what are you doing anythingspecifically to kind of help
that?
You know, get the get the wordout about?
Hey, how do we make this moreaccessible?
I mean, what kind of things canpeople do, I guess, for that?
Speaker 2 (36:49):
Like I said, partnering with the Gitche Yami
Trail Association.
I'm also working with the DNRin.
You know how do we continue todo great things in Minnesota,
whether it's at our state parksor with the trails.
I also just recently gotappointed to like their legacy
trail through the whole state ofMinnesota commission.
So that's like new as of lastweek.
(37:09):
So you heard it here first, butyou know I try to be as engaged
as I can and then also, you know, of course, with my board,
through Above and Beyond Withyou, with our nonprofit.
You know we're trying to figureout how do we come alongside
some of these places that arealready doing the work, and the
biggest thing is in disabilityculture.
We have the saying of nothingfor us without us.
(37:31):
And so at every step ofplanning, of execution, of
maintenance of, you know, rehabof these trails, of these parks,
of these outdoor adventures, isthere a stakeholder who
represents disability cultureand community?
And if there's not, then that'sthe problem.
(37:52):
And if, if you just invite usafter the fact, like before I
started the non-profit, before Istarted doing the talking, it
was always like oh, jenna, wemade this great space and we
want you to come and see it andthen will you do an assessment
of it and tell us how great itis?
And I was like this is reallyawkward, because what if it's
(38:13):
not?
And many times it was just likelittle things right.
Like the contractor put thesoap dispenser where you
couldn't reach it because it'sback on the mirror instead of on
the side in the bathroom, orthis threshold is like quarter
of an inch too high or too bigfor somebody with anti-tip bars
on their chair, or you know.
(38:35):
The list goes on of like whatit could be.
And I'm like, oh, please, don'task us to come and like kind of
give you the pat on the backafter the fact, because you're
not going to go find morefunding to retrofit something
that's brand new.
But if you come to us at thebeginning, like even when it's
(39:04):
in the brainstorming phase andwe start talking about universal
design and it's a part of thewhole process, then we can be
more successful and like, up inour area we have a couple
different trailhead buildingsgetting built and you know
anything from showers tobathrooms, to resting spaces, to
congregating spaces, and it'sjust really important to have
that aspect there the whole time, because I've also been in
projects where it's like, hey,come and talk to us at the
beginning and then then there'scricket, cricket throughout the
whole process and it's like cometo the ribbon cutting ceremony.
(39:25):
And it's like, oh, you forgotthat conversation we had back in
June of two years ago and nowit's too late to go.
And oops.
Speaker 1 (39:37):
Yeah, that makes total sense Because I think a
lot of people probably thinkthey're doing what's good, they
think they're helping out by,you know, doing these things in
their minds.
But you're right, you need tohave someone representing every
step of the way.
That makes, now that you, Ithink, in the application of it,
it's turned into checklists.
Speaker 2 (39:55):
Well, here's the mandate that I must do.
But, like, if you go and Googlelike height of accessible grab
bars in an accessible bathroom,it'll say like 32 inches to 42
(40:16):
inches.
Well, there's a lot of lifethat can be lived or not lived
in 10 inches of a support.
While it's great that they'rethere, you really need the lived
experience of people and peoplelike myself, who can see beyond
their own disability and theirown needs, that can put
(40:36):
different hats on and be like oh, but if I was in a power chair,
this is the space I would need,or this is how I would transfer
.
Or if I was in a scooter, or ifI was using a mobility walker,
you need somebody that can thinkthrough hence my new title of
being an accessibility educatorlike, let's learn together.
We're in partnership, we're notlone silos.
I'm not the expert, you're notthe expert, but together we can
(40:58):
be the experts of this space andof these needs and try to do
our best.
And with that, many times we, asdisabled people are being made
to feel like we're just achecklist.
Right, I'm just a diagnosisfrom the medical world.
I'm just this.
Many different jointdeformities to the medical world
.
I'm just this many dot dot dotright.
(41:20):
This many dot dot dot right.
But in reality we are all fullyhuman, people that have full
amazing stories, that just wantto get on the trail, that just
want to go fishing, that justwant to go and do a deer hunt, a
pheasant hunt, a whatever, thatjust want to go put their feet
in the sand of a beach.
Speaker 1 (41:39):
So tell me a little bit about, then, your nonprofit
Above and Beyond With you.
What kind of things are youdoing?
And then tell me, I know youwrote a book too.
Can you kind of tell a littlebit about the book as well, if
you don't mind?
Speaker 2 (41:50):
Yeah.
So Above and Beyond With you isa nonprofit.
We're celebrating our thirdanniversary this April.
It was kind of birthed out ofmy 2020 Bush Fellowship.
Again, Above and Beyond standsfor the fact that we can go
above and beyond the ADA code.
There's nothing that says youhave to do this.
You can go beyond and actuallybe inclusive.
Speaker 1 (42:12):
Above and beyond the checklist right Correct, yeah,
okay, yeah.
Speaker 2 (42:16):
So you can be committed to the spirit of ADA,
not feeling legalistic and stuckin that checklist.
And then the with you stands toa nod to my music career,
because little kindergartners,five year olds, can't say
Udenberg, right.
Some of us adults struggle withthat, myself included, and it's
been my name for 44 years, sothe kids changed my name to miss
(42:37):
you.
And, more importantly, the wordwith is, as you know, bigger
than any of the words, becausethe whole point is that we are
making authentic relationshipstogether, we're moving forward
together, we're changing theworld together, and so that's
really the impetus and the heartof all of it.
We want people to share theirstories, we want to promote the
(42:57):
work and the accessibility.
Like, please don't tell mesomething's accessible for me.
Give me the pictures so I candetermine if it works for me, if
it's accessible for me, becausesaying something's 100%
accessible, I already know.
Like, oh, you're ableist, youdon't really know, you're not
wheeling the wheel, you're notwalking the walk, You're not
talking the talk, you're justhoping that nobody sues you,
(43:21):
kind of whatever, and that'sjust gross.
Speaker 1 (43:23):
Checklist Checklist.
Speaker 2 (43:31):
Correct.
I checked you off and I'm done.
It's your fault if you can'tsucceed and be safe in our space
.
That's kind of what it feelslike, which is gross and not
okay.
Speaker 1 (43:36):
No, exactly, and I think you know.
I'm glad you're talking aboutthis because, as someone you
know, I don't have a disabilityand I don't have anyone in my
immediate family, so I don'tunderstand it as well.
So I appreciate you sharingthat, because the whole
checklist analogy has reallykind of opened my eyes to it a
little bit more, because I thinkyou're right.
I think in our minds we justkind of oh, I'm just checking
these boxes, but you're the oneliving it, you're the one that
(43:58):
knows and we need to be with youthrough that.
So I appreciate you sharingthat.
It's been eye opening for me.
So thank you.
Speaker 2 (44:05):
Thanks.
And then, yeah, with my bookwithin my spokes, and a good
friend of mine helped me titleit.
Well, there's the backside ofme, but I'll give you the front
side, and so you know, it waskind of a nod to the whole like
spokes, because once you throwthe firefly on me, I am just
(44:26):
like an e-bike, so let's hit theground and just do this thing.
It also is a nod to the factthat I'm not stuck, I'm not
confined to my chair.
I live life between my spokes.
But you know, within my spokesthere's a whole nother story.
There's a whole.
I mean, it's just multifacetedWriting it.
I did it through aself-publishing school, you know
(44:46):
kind of vantage point.
It was tough to write.
For parts of it I had a greatcoach who was just like write
the stories that you have mentaland spiritual capacity to on
that given day.
Don't feel like you have to doit chronologically and then just
do it as a.
You know, even if it's just atherapeutic type thing and maybe
it never goes to beingpublished, maybe some of those
(45:08):
chapters don't ever become apart of the actual final
manuscript.
And so it took me about a yearto write it.
I talk about my depression.
I talk about more in depth,about, you know, those different
areas of life and then so mysubtitle is a tapestry of pain,
growth and freedom.
It's not just my life story,right, it's all the other lives
(45:28):
that are interconnected to mylife and some of the people that
come into our life.
Some of the relationships arelike super vibrant and they're
beautiful and they're heavywoven and they're different
kinds of threads and they'rethey're, you know, going through
that tapestry throughout.
Sometimes there's just reallyfaint threads.
You know, some relationshipsare just in our lives for a
(45:51):
certain period, for a certainreason, for a certain depth of
who we are, and then when youflip that tapestry over, it's a
hot mess.
There is knots and and threadsand broken things and you know,
like that's kind of my life.
And the part that I love themost about my book is that I
have two good friends I talkabout in there, megan and Jamie.
(46:11):
And it's so funny becausepeople will be like, megan, I
read your book, it's so great,and she'll be like I don't have
a book, it's Jenna's book.
I don't have a book, it'sJenna's book, and I'm like, no,
megan, it's give me your booktoo.
I mean you're in there for achapter plus, but you know, and
then my good friend Jamie, whoalso has the same diagnosis I do
and has been a manualwheelchair user for her whole
(46:32):
life.
She's kind of my disabilitymentor and best friend and all
the things, but yeah.
So now I have local people thatare like when is Jamie coming
to visit again?
Speaker 1 (46:44):
Can she?
Speaker 2 (46:44):
can she come visit us at the library?
We're fangirling, we want tomeet this friend, and you know,
that's the whole point.
Like that's the added benefitof being an author, like sharing
this journey with people thathave made my life greater and
deeper and more meaningful andare there to support and the
rider dies.
Speaker 1 (47:01):
Fantastic.
This has been awesome for me.
So I really I'm so glad we gotto talk.
Just, you know it does good forme.
I mean, it uplifts me hearingyour story and who you are.
There's the question I alwayslike to ask, because this is
well, it's an adventure podcast,but for you, jenna, what does
adventure mean to you?
Speaker 2 (47:20):
Oh, you even prepped me for this question too.
I, jenna, what does adventuremean to you?
Oh, you even prepped me forthis question too.
I was like this is a good one,but I'm just like my students
and I didn't do my homework.
No, adventure for me isstepping out of your comfort
zone, so that could be aphysical thing, a mental thing,
a spiritual thing.
(47:40):
All the different ways that weshow up right, different food,
can be an adventure.
Learning a new language can bean adventure.
Coming on a podcast can be anadventure absolutely right and I
would say something that putsmore wind back in your sails,
like it just helps you feelhuman, because I don't know if
any other parts of the animalkingdom get that adventure,
(48:01):
except for you know deer runningacross the road and trying not
to get hit by these movingobjects, but that seems more
fearful than adventure.
Speaker 1 (48:10):
Just trying to survive here.
Speaker 2 (48:12):
Right, but fear can be a part of our adventures.
Speaker 1 (48:17):
What does the future hold for you?
Where do you, where do you wantto go with this?
What's kind of what are youthinking?
Moving forward?
Speaker 2 (48:21):
I'm excited for my nonprofit to continue to grow.
I'm excited for our message tocontinue to get out there and
make impactful change andsustainable change.
I'm excited for agencies andorganizations and business and
industry to start and continueto figure this out.
(48:43):
I am knowing like, let's behonest, there's lots of upheaval
and uncertainty in our world.
So figuring out how do wecontinue this work in meaningful
and authentic ways, no matterwhat comes at us to knock us out
, what adversities, what otherextra obstacles we're going to
have to overcome to just makethis world a better place and
(49:06):
keep doing the work and keepfighting the fight.
I feel like there's another bookin me, but I'm not quite sure
what that will look like.
I've kind of dabbled with thefact that I would love to write
a children's book, because Ifeel like so often those stories
aren't shared and there's somany kiddos going through
medical things and disabilitiesand I mean disability can be
acquired at any age, any time,any reason, and we're the most
(49:29):
that's in the nonprofit world orpersonal, and I'm excited that
(49:50):
people are fascinating, right.
So just having thoseconversations and slowing down
in life to get to know eachother A hundred percent.
Speaker 1 (49:54):
Couldn't agree with you more, jenna.
This has been fantastic.
I love what you're doing.
If people want to follow along,get to know you get your book,
where can they do all that?
Speaker 2 (50:03):
Yeah, so check out our website
aboveandbeyondwithyouorg.
There's a link to buy my bookthere.
My book's out on Amazon orBarnes Noble.
Wherever you buy your books,you can probably find it,
especially online, and you canconnect with us on Facebook,
Instagram and LinkedIn.
Just looking for Above andBeyond With you.
Speaker 1 (50:19):
Above and Beyond with you, above and Beyond with you.
Awesome, love it, jenna.
Thank you so much for coming onJourney with Jake.
Speaker 2 (50:26):
Yeah, thank you so much, Jake, this has been
fabulous.
Speaker 1 (50:28):
A big thank you to Jenna Udenberg for joining me on
the show.
I learned so much from her andI'm truly grateful that she's
out there not only livingadventurously but also being
such a strong advocate for thedisability community.
If you'd like to learn moreabout Jenna's nonprofit Above
and Beyond With you, be sure tovisit her website at
aboveandbeyondwithyouorg, andremember that's the letter U at
(50:50):
the end.
You can also follow her onInstagram at
aboveandbeyondwithyou.
Thanks again, jenna, forsharing your journey with all of
us, my friends.
This is exactly why I lovedoing this show and I'm so
thankful that you're herelistening and being part of the
journey.
If you're enjoying Journey withJake, consider leaving a rating
and review on Apple Podcasts orSpotify.
(51:11):
It would mean a lot to me.
But hey, no pressure, I'm justhappy you're here.
Next week I've got anotherawesome episode for you with
Zara Atwater.
Zara packed up and hit the roadacross Australia in her van and
she's gotten some incrediblestories and life lessons to
share.
You won't want to miss it and,as always, remember it's not
always about the destination asit is about the journey.
(51:33):
Take care, everybody.
Thank you.
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