December 15, 2025 • 35 mins
Jenna Udenberg is a powerhouse of advocacy and inspiration, and today, we dive deep into her incredible journey of courage and creativity. Living with juvenile idiopathic arthritis since the age of eight, Jenna has transformed her challenges into a platform for promoting accessibility and inclusion through her nonprofit, Above and Beyond With You. She’s not just about breaking down barriers; she’s about building bridges across communities, and boy, does she do it with heart! Alongside her advocacy, we chat about her memoir, "Within My A Tapestry of Pain, Growth, and Freedom," where she shares not just her struggles but also the lessons she’s learned, proving that vulnerability can lead to empowerment. So grab your favorite beverage, kick back, and join us as we explore how Jenna is making the world a more inclusive place one story at a time!
Takeaways:
- Jenna Udenberg, a fierce advocate for accessibility, shares her journey with juvenile idiopathic arthritis, highlighting the importance of lived experiences in advocacy.
- The challenge of accessibility is real, as Jenna discusses her struggles with finding accessible spaces in Minnesota, even years after the ADA was enacted.
- Through her memoir and nonprofit, Jenna emphasizes that disability is just one aspect of a person, and we should strive to see the whole individual.
- Humor and grace play vital roles in addressing uncomfortable questions about disability, as Jenna encourages open conversations rather than assumptions.
Mentioned in this episode:
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Transcript
Episode Transcript
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(01:00):
Welcome to Becoming BridgeBuilders, the podcast where we bring
together voices that arebreaking down barriers and building
bridges across communities,cultures, and causes. I am your host,
Keith Haney. Today's guest issomeone whose life and work embodies
courage, creativity, andcommunity. Jenna Udeberg is a lifelong
resident of Minnesota's NorthShore, a former music educator of
(01:23):
19 years, and a passionateadvocate for accessibility and inclusion.
Jenna has used a manualwheelchair since the age of eight
due to juvenile idiopathicarthritis, and she's turned her lived
experience into a powerfulplatform for change. She's a 2017
Blandon Foundation CommunityLeader and a 2020 Bush Fellow and
(01:44):
a 2025 Shannon LeaderInstitute Fellow. Through her column
Local View from Four Foot two,and her memoir, Within My A Tapestry
of Pain, Growth, and Freedom,Jenna invites readers into her world
of vulnerability and insight.She's also the founder of above and
beyond with you, a nonprofitworking to increase accessibility
(02:05):
and inclusion across Minnesotaand beyond. When she's not writing
or advocating, you'll find heroutdoors, fishing with friends, playing
games, or coaching the RoboDeb's LEGO robotics team. Today,
we'll explore Jenna's journey,her vision for a more inclusive world,
and the bridges she's buildingevery day. Jenna, welcome to the
(02:26):
podcast.
Thanks, Keith. How are you today?
I'm good. It's so good to haveyou on.
Yeah, I'm excited for our conversation.
I'm going to ask you myfavorite go to question. What's the
best piece of advice you'veever received?
Ooh, that's a good one. Iwould say it was when I was writing
my memoir, and it was from mycoach, and she said, write the stories
(02:49):
that you have the energy andthe ability for in that day. So live
out your life in the ways thatyou're experiencing it and also,
like, embrace those spots.Right? The good, the bad, the ugly,
the hard, the mountaintops,the valleys, all those spaces.
That's good advice. I likethat. And how have you. So you've
(03:11):
taken that and kind of appliedit to the way you kind of move day
to day, huh?
Yeah, and I think I probablywas already doing that, but sometimes
it just really helps whenothers reflect that to, you know,
they hold up that mirror andyou. You look and go, oh, I live
that out. Or, oh, I thinkthat. Or that's my core value. Or
that's how. That's how I wantto live my life. So, yeah, I appreciate
(03:33):
when able others are able todo that for me.
That's awesome. So can youshare with us what life like, was
like growing up with juvenileidiopathic arthritis.
Yeah. So I was diagnosed whenI was age 7. That Reader's Digest
version of it is family wasout skating on a flooded rink in
(03:55):
northern Minnesota and I had afall. And so it took many different
layers of getting diagnosedbecause Lyme's disease was fresh
on the scene and a lot of thesymptoms were very similar. So I
had a lot more. I don't usethis word lightly, but medical trauma
in that process, I mean, causelittle 7 year olds and back in the
(04:16):
late 80s, the medical worldwas very different in our understanding
of how to treat kids in themedical spaces than today. And so
all those experiences justmade me stronger and made me who
I am. My disease cycle wentvery fast and very aggressive. So
I was in a manual wheelchairby age 8. So within like a year or
(04:37):
less, I found myself not beingable to walk any long distances because
it attacked my knees. So thatwas the first thing. And then it
went to one ankle and then itwent to the other hip. And I was
kind of like this big game ofTetris and Jenga all at the same
time with a little bit ofJumanji on top of it. And so my doctors
would be like, so A plus Bequals C. That's what my doctor book
(04:59):
tells me to do with you,whether it's medications or therapies
or whatever. And my body wouldspit it back out and be like, it
is Q times the square root ofR to the cube of S. Like it was just
not having whatever they weregiving me. Right. And back in the
80s, it was actually calledjuvenile rheumatoid arthritis. And
it wasn't until, to myknowledge, until about eight years
(05:21):
ago, they changed it tojuvenile idiopathic arthritis or
just plain old juvenilearthritis. Cause they finally figured
out that it didn't follow therheumatoid disease progression, which
I was like, Q times the squareroot of R to S cubed. Could have
told you that back in the 80s,but you know, so it was just different.
(05:43):
Right? And when I think aboutit, I'm like, wow, I was disabled
before the Americans withDisabilities act was even a law,
was even a thing. And so whenI think back to my story and when
I was writing my memoir, itwas just became very apparent of
like, it wasn't just cause Ilived in rural Minnesota. It was
because laws in society justhadn't caught up to the fact that
(06:04):
children get arthritis too.Children are in wheelchairs, children
have disabilities. And so Ifound myself fighting labels and
Words and assumptions at avery young age. And now I have that
vocabulary. But when I was achild I didn't. And so I tend to
(06:24):
say I'm very thankful that Ibecame disabled as a child, which
a lot of people are like,what? And I'm like, but I don't know
any different. Like I havememories of running and walking and
playing and having sleepoversand going to birthday parties and
all the things a typical sevenyear old girl would know and going
out hunting and fishing withfamily and you know, all the typical
Minnesota things. But had thathappened later on in life, I can
(06:51):
understand why others thatenter my community and culture have
other struggles, differentstruggles. Again, not to say that
I didn't. It just kind ofthankfully has been wiped from my
memory in some ways. And inother ways it's become my platform.
It's become why I'm sopassionate and, and advocacy and
making life easier and more.The ability to thrive within community
(07:16):
instead of being ostracized orsecluded. Right. We want to be included
and being a part of all, allthe things of life. So.
Correct.
Yeah.
So I'm curious, as you thinkabout, you talk about how it was
good to have it as a childbecause you had a chance more time
to kind of grow into that. Howhas that shaped your perspective
(07:40):
in terms of helping otherpeople deal with accessibility and
inclusion?
Yeah. You know, being honestand raw on an open book like I typically
am, sometimes I do have tocheck my own bias. Cause I'm like,
whatever, get over it. Right.It's like, oh wait, that's the seven,
eight year old Jenna speaking,not the 45 year old Jenna that's
(08:01):
going, oh yeah, if you couldwalk, run, do all these things, not
be stuck in medicalappointments four days a week till
age 45. And then somethinghappened like that compassion, that
empathy, that understanding,that curiosity. Right. Is very, very
different. And there are justsome things because of when my disability
(08:26):
happened and because it's aslow progression. Right. Like I don't
have the life experience ofbeing typical. Being in a car accident,
waking up the next day. Andlife has changed as you know it.
Mine was more of like I'msimmering in a pot of hot water and
it just keeps getting hotterand hotter and hotter and then it
(08:46):
gets cold for a while and nowit gets hotter and hotter and hotter.
Cause the arthritis and themedical world and all my other diagnoses
just kind of have those cyclesof mountains and valleys. So.
Yeah, that's interesting. I'mcurious what inspired you to write
above and beyond with you.
Oh, my memoir within myspokes. Yeah. Well, I've always been
(09:10):
told since a young age that Ineeded to write a book. And so back
during the pandemic, my schooldistrict came back and said that
they weren't interested inaccommodating my work from home order
anymore. And at that time, Iwas in my 2020 Bush Fellowship. And
so I did a big pivot of what Ithought my fellowship would be before
the pandemic, and then a bigpivot of once we learned what life
(09:32):
was like during it. And thenalso for me, even though other Bush
fellows got to kind of liveout parts of their original plan,
I wasn't. Cause I'mimmunocompromised. And that was my
first time of experiencinginvisible disabilities. And so that
brought me to, all right,well, I've got all this time. And
(09:53):
Bush was like, hey, if you'relearning how to write, the fellowship
can definitely be used towardsthat. And so I was like, yeah, this
is awesome. Like, I kind ofknow how to write. I'm kind of a
wordsmith. But learning aboutthe whole publishing world was just
flabbergasting because it wasjust like, you just have an idea,
you write it out, you findsomebody to put cover art, and it
(10:16):
just appears on Amazon andBarnes and Noble and all the places,
right? Just like that magicalthing. And it is so not. It's a lot
of hard work.
So.
And like I said earlier, I'vealways been an open book. Probably
sometimes a little bit tooopen if you talk to my family members.
But, you know, that part of itwasn't necessarily hard. Reliving
(10:42):
a lot of the valleys, relivingmy suicide ideation time, reliving
my finding of my faith to bemy own. Yes, during those times,
it was hard to relive it. Butfor me, they have been wounds that
are scars for so long. They'renot open, gaping wounds. And so it
(11:05):
was just a differentexperience coming back and sharing
those stories, gettingpermission from family and friends
to share their names or sharespecific stories or being honorable
to. To them, but then alsobeing real about. Real and authentic
about my story and about thestruggles. And a lot of times maybe
(11:27):
about things that they neverknew. Right. Because even your most
intimate friends or family orpartners or whatever, they still
don't really know your innerworkings. And even for ourselves,
right. Our Creator knows usmuch better than we even know ourselves.
So I love that journey. I lovebeing in the world of published authors.
(11:52):
I love being able to connectand encourage New authors, learning
from more veteran authors. Andso it's just powerful. And I believe
that everybody's story needsto be shared. And yet, after going
through that process, now Ireally understand why people don't
all go and publish 12 bookseach. Right? Like, one was a lot.
(12:15):
I hope that there's some morebrewing. But, yeah, it was a great
experience, and there's stillgreat things happening from it. And
it's super funny because inthis process, I was given the word
tapestry before I even wrote.And I wasn't sure what that would
mean and what that was about.And so when it became a part of the
subtitle, it's funny becausefriends that gave me permission to
(12:41):
use their names, they hadother friends, other family, other
co workers read the book, andthey're like, oh, Megan, I read your
book. And she's like, what areyou talking about? I didn't write
a book. And she's like, oh,Jenna's book. And I happen to be
like, a chapter and a half,right? Yeah. Yeah, your book. Your
book is really good. I didn'tthink about this or this or this.
And Megan's like, this isn'tmy book, but okay, you know, and
(13:05):
so. And then there's othertimes I'm, you know, get emails from
people or just talking topeople on the street, and they're
like, oh, yeah, this story.Tell me more about it. And I'm like,
oh, goodness, I shared that inthe book. Oh. Like, you know, when
it's your labor of love for awhole year, and then you go through
the editing process and allthe things, you tend to kind of forget
(13:26):
some of the aspects that arein it.
So you talked about thedifficulty of writing a book. What
were some of the lessons youlearned that other authors would
learn from your journey ofwriting a book?
Ah, great question. I wouldsay to have compassion and grace
for yourself. And even thoughI appreciated the publishing space
(13:49):
that I was going through andthe training and the coaching, ultimately
I had to listen to my ownvoice. I had to listen to my spirit
about things. And I had totake about three months off. Cause
I was just tired of hearing myown voice. I was tired of my own
story. I was tired of, youknow, just all those scripts. Like,
(14:10):
I needed other things, sobeing able to read other authors.
And that's when I fell in lovewith so many of the other disability
activists that have gonebefore me, like Judy Heumann and
Ed Roberts and, you know,like, just those big names that made
a huge legacy and a hugechange within My community and culture.
(14:31):
Um, and for me, and this mightseem odd, but I would rather read,
like, youth novels. And so Idelved a lot into, like, middle school
level books that were writtenwith the main character being disabled.
Right. Like, I didn't havethat as a kid. There was no representation
(14:52):
as a child, as a young adult,and even now as a middle aged woman.
Right. So I'd be like, I'mjust gonna devour this book. And
that helped me in my processto then be like, oh, let me look
at my story maybe in a littledifferent light. So that was very
helpful.
So have you thought aboutgoing back and writing in that space
(15:15):
for young teens who were goingthrough disabilities?
Yeah, I would love to takewithin my spokes and find those spaces
that maybe I didn't share moreof myself and share those times,
especially middle school.Like, that's where I found my faith.
That's where I went through alot of just hard, struggling things
(15:37):
that I think youth today canidentify with whether they're disabled
or not. Right. And a part ofme would also love to work with a
couple different illustratorsthat I know and create a children's
picture book to also, again,give hope and encouragement to kids
that are just maybe not seeingthemselves in their community or
(16:00):
not seeing that they have abright future and that there's a
purpose and a plan for theirlife and for their disability.
That's so critical. I'mcurious, since you're an advocate
for people with disabilities,what challenges are you seeing in,
like, even Minnesota todaythat are still really prevalent?
(16:21):
Oh, yeah. You know, we're 35years out from the Americans with
Disability act being, youknow, made into law. But in all honesty,
it was the greatest unfundedmandate the American government has
ever put in place. And so, youknow, even two weeks ago, I was in
this new space that I love togo to in a community I love to go
(16:43):
to, I should say. And thecornerstone on the building said
2024. And after I got up theramp, I couldn't find the power button
to get in the space. I saw thesticker on the door, but I couldn't
find the button. And just as Ifound the button, I also realized
that the back of my wheel waslike two inches from me going down
the exterior cement stairs.
Oh, no.
(17:04):
And I was like, I am a 38 yearveteran of being in a chair and I
about did bad things tomyself, like, what would a newer
person in their chair due orwhatever. And so that is just so
frustrating. Right. Becauseit's like, you think, oh, just old
buildings. They're notaccessible. They don't go above and
(17:27):
beyond the Americans withDisabilities Act. And I think a lot
of it is still, unfortunately,in some ways, just education. Right.
We believe that the code thatcomes with the ADA is the ceiling,
when really it's the floor.Right. It's the use of words. Right.
Like, I personally, again,there might be other people in my
(17:49):
community that like this word,but I cannot stand handicap anymore.
I have never loved golf. I amnot a golf term. I'm not gonna be
like, hey, Keith, you're abirdie. How's birdie doing today?
You know, like, it just feelsweird and odd and not. Not right.
Right. For me, Again, otherpeople might like it. For me, Not
a big fan. And so a lot of onpodcasts and in other spaces, my
(18:13):
biggest thing is disability isnot a bad word. So let's just use
it. Let's call it what it is.And a lot of times I use my education
as a background of. Sokindergartners. Well, probably preschoolers
now, right? Like, this is ared crayon. This is a blue crayon.
This is an orange crayon. Noone is better than the other. No
(18:34):
one is inherently good, andone is inherently bad. It's just
red. It's blue, it's orange.They're crayons. You color with them.
You make art. You show yourcreativity. And so, again, like,
sometimes we need labels tolearn. Right. Jenna uses a manual
wheelchair. Awesome. Jenna isdisabled. Awesome. Jenna has medical
constraints. Awesome. Jennaloves music. Awesome. Jenna's a trumpet
(18:57):
player. Awesome. Like, howabout we just say, Jenna is Jenna.
And yet I also understand thatat times, like, if you and I wanted
to go get coffee, you wouldhave to know Jenna's in a wheelchair.
The coffee shop needs to meetXYZ needs. Right?
Right.
Hopefully, someday we won'thave to think about that. You and
I can go anywhere, whetherwe're handicapping Birdie or, you
(19:21):
know, like, we can just go andbe and do like anyone else. And so,
again, words matter. We needto flip the scripts, and we just
have to have curious, honestconversations. Knowing that, especially
in my space, like, forlisteners, I just want to say, like,
(19:43):
coming to me as a veteran andknowing that I'm an open book and
that I'm a published authorand that I lead a nonprofit, can
probably guarantee you cancome and have an honest conversation
with me and ask hardquestions. Right? Going up to any
random stranger that you haveno idea about in Target or at A coffee
shop or wherever and be like,hey, what's wrong with you? Hmm?
(20:04):
Let's not do that. Right? Not. Okay.
Probably not. Probably not thebest way to go.
Hey, by the way, I see you'rein a chair. Do you know so and so
from Philadelphia? That's in a chair.
That's also in a chair.
Right, right. Like, let's not.
Do you have like a chair club?Yeah. No. You get that when you're.
When you're either minority orhave disability, people, like, well,
(20:26):
you must know so and so theyalso have this disease. Like, they
don't.
Right.
Like, everybody know everybodyfrom Louisiana. I don't know everybody
from Louisiana. I do not.
Right. And then sometimes Ijust need to flip it and be like,
so do you know all the peoplewith orange shoes? Or like something
that you know is identifyingthem. Like, so that other person
over there with glasses,what's their deal? You know?
(20:50):
Yeah, exactly.
For sure.
It's like being tall. It'sfunny. People always ask me, did
you play basketball? So, youknow, I got tired of hearing that
one. So I was with a shortperson. I'm like, so did you play
miniature golf? I mean, do wejust like, make assumptions?
Right? And. And a lot of thatis right, Like a. It's human nature,
right? So we can haveforgiveness and grace and make fun
(21:11):
of it or laugh together withit. But then on the flip side too,
it's like, well, but it's ouruncomfortability, right? It's because
we see difference and we don'tknow how to work across difference.
Or we don't know how to saythat or even just acknowledge that
in our own head of like, I'muncomfortable right now. Cause I've
(21:32):
never lived the life ofwhoever's in front of me or whatever
difference my brain is pickingup on. And a lot of times it happens
unconsciously. But then you'remaking that conscious decision to
say something stupid or dosomething stupid or not do something
that you should be doing.Right, Right, Exactly. We're a hot
mess. We're just not.
(21:52):
We are a hot mess. But I likewhat you said, though. I think it's
about having the grace to knowthat sometimes it's an honest, uncomfortable
conversation. And I always tryto approach people who ask questions,
sometimes out of curiosity,with that level of grace, so that
they don't feel. Cause I thinkit's an opportunity for us who are
(22:13):
in that space, whatever sideof the coin we are, to respond with
grace so that people don'tshut down in the future and isolate
someone else. So if you havethat ability to have grace and show
grace and mercy, it can go along way toward opening up further
conversations with other people.
Yep. And I think the educatorin me will never die. Right. Like,
(22:35):
when I went through my bigidentity crisis, I was like, I'm
no longer an educator. Butthen when I was given accessibility
educator as new verbiage forme, it was like, oh, yeah, this is
why my work stands out and isdifferent and why my nonprofit is
different. Because we're allconnected to the education world
in some ways, and we just comeat it with a different perspective.
(22:58):
Right. But then there aretimes when I'm like, I am not your
educator. Right. Like, thankyou. Nothing for us, without us.
That's a huge thing indisability culture. But in the same
respect, it's like, go Googleit and then go have an honest conversation
with an actual disabled personabout what you googled and learned.
But I don't need to be yourfirst step into. And then I try to
(23:22):
remind myself of that becauseof my privilege and be like, oh,
yeah, it's not your job,Keith, to teach me about X, Y, Z
of your culture that yourepresent. Right. Like, I should
do some of my own googling andmy own research and then be like,
so I just have a dumbquestion. Maybe it's not dumb, but
I'm. I'm curious.
Right?
(23:43):
Right. And if you don't feelcomfortable, and that's what I'm
trying to learn and also putinto my vocabulary bucket, every
day is like, I have a curiousquestion. But if now's not the time
or it's not appropriate or youdon't feel comfortable with it, you
can go tell me to go butter mypancakes. Right. Like, we're cool
with that. And I get thepoint. Right. Because there are just
(24:04):
times. And even just becauseI'm an educator doesn't mean I always
want to be educating. Like,figure it out, have conversations.
Yeah.
So tell us about yournonprofit you've mentioned a couple
of times. Tell us about whyyou started and tell us what you
tried to do.
Yeah. So above and beyond withyou has been a dream for a long time.
(24:25):
Again, you know, being aneducator, I'm like, how can I use
my summers? Like, I wanna goand tour the North Shore of Minnesota,
or I wanna go explore adifferent state, or I wanna go explore
this area, but I don't havethe funds. Right. As an educator
at that time, to go and usepersonal investments. And so I was
like, there's gotta be someway of making this all happen. Well,
(24:46):
then of course, the Internetexploded, social media content, people
became. And I was like, oh,okay. And I was like, so you can
make that happen. You can dothose things. And again, I'm like,
that doesn't feel true toJenna. Like, I'm wanting to be in
spaces, help educate and makesome change. Right? So I was like,
(25:11):
how do we do this? And thenlike I said earlier with, you know,
Ada being an awesome thing andyet unfunded, especially being a
rural person, it was like allthese mom and pop places, they have
no ability to put a ramp in.They have no ability to financially
reconstruct a whole bathroom.And so even though above and beyond
(25:31):
with youh isn't at thatfinancial spot yet where we want
to be, you know, in anothercouple of years, I hope in current
situations in our society, Ihave a little less hope. But I would
love to get to that point ofhow can we come alongside local business,
local industry, help you makeyour things accessible then for promote.
(25:53):
Because so often peoplebelieve that, you know, disability
community means that you'repoor or you're below poverty. And
yes, there is a huge part ofour community that is in those spaces.
I've been there before in myjourney. That needs to change 100%.
And yet there's also the otherside of that coin of there are people
(26:16):
that aren't. There are richpeople who are disabled. There are
tons of different definitions,labels, abilities that come within
disability culture. Anddisability is just a part of the
natural process. So as ourbaby boomers, as our aging population
start inheriting all thosenatural disability types and experiences,
(26:39):
the world around us is goingto change, and rightfully so, and
hopefully quicker than it hasin the last 35 years. But so again,
above and beyond stands forgoing above and beyond the code.
Like, let's logically, let'swork with community to make these
spaces great. Let's not have acornerstone of 2024 and have somebody
in a wheelchair almost fallover the stairs and can't get in
(27:02):
your building. Right? So wecan go above code. We can do beyond
what these things say. And thewith you is we believe in being with
them. Like we're makingrelationships. This isn't just like
a, hey, hire us to consultyou. Hey, hire us to come and do
a wheel through assessment.But like, no, we're in this for the
long haul. Like, let's livelife together. Let's make this better.
(27:26):
And then the U, Capital U is anod to my last name. Cause little
kindergartners couldn't sayUdenberg. Adults can't. I sometimes
even can't. So. And if theydid get it out, I would already be
like down the hall and aroundthe corner and I went to your little
five year old, you know, Ms.Hootenberg. And then, you know, tears
and all the bad things. So thekids early on in my career changed
(27:48):
my name to Miss you. And soit's just a nod to accessibility
education and that, that we're together.
That's awesome. You also havea column, local view from 4 foot
2. Tell us about what inspiredyou to start that.
Yeah, so our community had achronicle when I was a kid and I
(28:11):
thought that was cool. I wasan editor for our high school newspaper
back in the day. And then, youknow, rural newspapers just kind
of dried up for a while. Butthen an awesome lady came into her
own within our community andsaid, let's do this thing. And so
she became the editor and sheis an ally and also a caregiver of
(28:36):
somebody with a disability.And so she's like, hey, do you want
to write a column? I don'tknow what this means. I don't know
what it's going to look like.But I want your voice, I want your
stories, I want yourperspective and I value this. And
so what do you think? I waslike oof weekly doing all the things.
(28:58):
That's a lot. How about everyother week? You know, and it's just
been amazing because every, Iwould say almost every week when
I'm out in the community,people will stop me and of course
they know who I am, but I haveabsolutely no idea who they are.
Right. Sometimes I do, butmore often than not. But they just,
(29:23):
you know, share. They're justencouraging of. Hey, you shared this
story about this waterfall. Ididn't know at my age that I could
traverse out to this localwaterfall and see it. That there's
a bench there or that there'sthis or that or I didn't know that
I was kind of self sabotagingin the words that I was using about
(29:46):
myself or about the conditionthat I'm now finding myself in. And
so that just keeps you fuelingthe fire to do this work. And again,
you know, I'll be honest thatsometimes I get tired of my own perspective.
I get tired of my own voice,my own story. And so I love when
(30:07):
other people are able to sharetheir stories and their experiences
around accessibility, aroundthe good and the bad and the things
that are locally important tous and also globally and societally
that's so cool.
So tell us again, who do youhope reads within my spokes, and
(30:27):
how do you hope this impacts them?
I would hope that anybody thathas curiosity of someone else's lived
life would read it. I hopethat they would share it. I hope
that they would review it.Right. It's all about the different
algorithms and sharing thatwork. And again, in this work, like,
(30:50):
yes, I'm being the mouthpiececurrently. I'm being the face to
it currently. But it's notjust my story. Right. It's our story
as a community, it's our storyas a society. And all of the funds
that come from the book salesgo directly into the work of above
and beyond with you. So makingspaces and people more accessible,
(31:13):
more human, moreunderstanding, and doing better because
we know better.
Awesome. I'm gonna ask you myother favorite question. What do
you want your legacy to be?
Oh, I loved seeing this one. Ithink it boils down to, you know,
my parents always instilled agood work ethic in us kids, and it
(31:36):
was always, leave a spacebetter when you leave it than how
you found it. And in the lastcouple years of this work, I've really
changed my mission to be notonly for spaces, but for people.
I want people to be better,more healthy, more loved, more full
(31:58):
of laughter and joy afterwe've spent time together than how
I found them. And what'sawesome is when they also do that
in return for me.
That's great. So in season sixof the podcast, we do something special.
Now, it's a surprise question.Pick a number between 1 and 10 for
your surprise question.
(32:19):
Ooh, number 7. The mostcomplete number. How about that?
That's a very, very biblicalquestion. Thought about that. Okay.
If you could look at throughone person's email without them knowing
it, whose email would you look through?
Interesting. Hmm. I think Iwould go to the mother of disability
(32:49):
advocacy, which is Judith Heumann.
Okay.
Because she would have lots ofpeople reaching out to her for wisdom
and other just random storiesbecause she was just a real deal.
A real deal Jewish woman wholived a lot of life. And. Yeah, I
think that'd be kind of fun to see.
(33:10):
That's neat. So give us yourcontact. Where can people find you
on social media? Where canthey buy your book? And where can
they find out about your nonprofit?
Yeah. So above and beyond withyouh CapitalYou.org is our website,
and there's links there to buythe book through Amazon or wherever
you purchase your books. Also,my audiobook should be coming out
(33:32):
soon, so hopefully that willbe out when the show drops. You can
find us on LinkedIn, Instagramand Facebook and we just look forward
to hearing from folks andconnecting and doing even more work
together.
Well, thank you so much. Jennareminds us that strength isn't always
(33:52):
loud, it can be seated, steadyand full of grace. Her story is a
testament to the power oflived experience and her work is
paving the way for a moreinclusive, compassionate world. Thank
you Jenna for being a bridgebuilder and sharing your journey
with us. We welcome you tofollow Jenna and pick up her book
and donate to her contributionor her charity if you think that's
(34:14):
a place for you. So keepliving the life and keep building
bridges.
Welcome to Becoming BridgeBuilders, the podcast where we bring
together voices that arebreaking down barriers and building
bridges across communities,cultures, and causes. I am your host,
Keith Haney. Today's guest issomeone whose life and work embodies
courage, creativity, andcommunity. Jenna Udeberg is a lifelong
resident of Minnesota's NorthShore, a former music educator of
(01:23):
19 years, and a passionateadvocate for accessibility and inclusion.
Jenna has used a manualwheelchair since the age of eight
due to juvenile idiopathicarthritis, and she's turned her lived
experience into a powerfulplatform for change. She's a 2017
Blandon Foundation CommunityLeader and a 2020 Bush Fellow and
(01:44):
a 2025 Shannon LeaderInstitute Fellow. Through her column
Local View from Four Foot two,and her memoir, Within My A Tapestry
of Pain, Growth, and Freedom,Jenna invites readers into her world
of vulnerability and insight.She's also the founder of above and
beyond with you, a nonprofitworking to increase accessibility
(02:05):
and inclusion across Minnesotaand beyond. When she's not writing
or advocating, you'll find heroutdoors, fishing with friends, playing
games, or coaching the RoboDeb's LEGO robotics team. Today,
we'll explore Jenna's journey,her vision for a more inclusive world,
and the bridges she's buildingevery day. Jenna, welcome to the
(02:26):
podcast.
Thanks, Keith. How are you today?
I'm good. It's so good to haveyou on.
Yeah, I'm excited for our conversation.
I'm going to ask you myfavorite go to question. What's the
best piece of advice you'veever received?
Ooh, that's a good one. Iwould say it was when I was writing
my memoir, and it was from mycoach, and she said, write the stories
(02:49):
that you have the energy andthe ability for in that day. So live
out your life in the ways thatyou're experiencing it and also,
like, embrace those spots.Right? The good, the bad, the ugly,
the hard, the mountaintops,the valleys, all those spaces.
That's good advice. I likethat. And how have you. So you've
(03:11):
taken that and kind of appliedit to the way you kind of move day
to day, huh?
Yeah, and I think I probablywas already doing that, but sometimes
it just really helps whenothers reflect that to, you know,
they hold up that mirror andyou. You look and go, oh, I live
that out. Or, oh, I thinkthat. Or that's my core value. Or
that's how. That's how I wantto live my life. So, yeah, I appreciate
(03:33):
when able others are able todo that for me.
That's awesome. So can youshare with us what life like, was
like growing up with juvenileidiopathic arthritis.
Yeah. So I was diagnosed whenI was age 7. That Reader's Digest
version of it is family wasout skating on a flooded rink in
(03:55):
northern Minnesota and I had afall. And so it took many different
layers of getting diagnosedbecause Lyme's disease was fresh
on the scene and a lot of thesymptoms were very similar. So I
had a lot more. I don't usethis word lightly, but medical trauma
in that process, I mean, causelittle 7 year olds and back in the
(04:16):
late 80s, the medical worldwas very different in our understanding
of how to treat kids in themedical spaces than today. And so
all those experiences justmade me stronger and made me who
I am. My disease cycle wentvery fast and very aggressive. So
I was in a manual wheelchairby age 8. So within like a year or
(04:37):
less, I found myself not beingable to walk any long distances because
it attacked my knees. So thatwas the first thing. And then it
went to one ankle and then itwent to the other hip. And I was
kind of like this big game ofTetris and Jenga all at the same
time with a little bit ofJumanji on top of it. And so my doctors
would be like, so A plus Bequals C. That's what my doctor book
(04:59):
tells me to do with you,whether it's medications or therapies
or whatever. And my body wouldspit it back out and be like, it
is Q times the square root ofR to the cube of S. Like it was just
not having whatever they weregiving me. Right. And back in the
80s, it was actually calledjuvenile rheumatoid arthritis. And
it wasn't until, to myknowledge, until about eight years
(05:21):
ago, they changed it tojuvenile idiopathic arthritis or
just plain old juvenilearthritis. Cause they finally figured
out that it didn't follow therheumatoid disease progression, which
I was like, Q times the squareroot of R to S cubed. Could have
told you that back in the 80s,but you know, so it was just different.
(05:43):
Right? And when I think aboutit, I'm like, wow, I was disabled
before the Americans withDisabilities act was even a law,
was even a thing. And so whenI think back to my story and when
I was writing my memoir, itwas just became very apparent of
like, it wasn't just cause Ilived in rural Minnesota. It was
because laws in society justhadn't caught up to the fact that
(06:04):
children get arthritis too.Children are in wheelchairs, children
have disabilities. And so Ifound myself fighting labels and
Words and assumptions at avery young age. And now I have that
vocabulary. But when I was achild I didn't. And so I tend to
(06:24):
say I'm very thankful that Ibecame disabled as a child, which
a lot of people are like,what? And I'm like, but I don't know
any different. Like I havememories of running and walking and
playing and having sleepoversand going to birthday parties and
all the things a typical sevenyear old girl would know and going
out hunting and fishing withfamily and you know, all the typical
Minnesota things. But had thathappened later on in life, I can
(06:51):
understand why others thatenter my community and culture have
other struggles, differentstruggles. Again, not to say that
I didn't. It just kind ofthankfully has been wiped from my
memory in some ways. And inother ways it's become my platform.
It's become why I'm sopassionate and, and advocacy and
making life easier and more.The ability to thrive within community
(07:16):
instead of being ostracized orsecluded. Right. We want to be included
and being a part of all, allthe things of life. So.
Correct.
Yeah.
So I'm curious, as you thinkabout, you talk about how it was
good to have it as a childbecause you had a chance more time
to kind of grow into that. Howhas that shaped your perspective
(07:40):
in terms of helping otherpeople deal with accessibility and
inclusion?
Yeah. You know, being honestand raw on an open book like I typically
am, sometimes I do have tocheck my own bias. Cause I'm like,
whatever, get over it. Right.It's like, oh wait, that's the seven,
eight year old Jenna speaking,not the 45 year old Jenna that's
(08:01):
going, oh yeah, if you couldwalk, run, do all these things, not
be stuck in medicalappointments four days a week till
age 45. And then somethinghappened like that compassion, that
empathy, that understanding,that curiosity. Right. Is very, very
different. And there are justsome things because of when my disability
(08:26):
happened and because it's aslow progression. Right. Like I don't
have the life experience ofbeing typical. Being in a car accident,
waking up the next day. Andlife has changed as you know it.
Mine was more of like I'msimmering in a pot of hot water and
it just keeps getting hotterand hotter and hotter and then it
(08:46):
gets cold for a while and nowit gets hotter and hotter and hotter.
Cause the arthritis and themedical world and all my other diagnoses
just kind of have those cyclesof mountains and valleys. So.
Yeah, that's interesting. I'mcurious what inspired you to write
above and beyond with you.
Oh, my memoir within myspokes. Yeah. Well, I've always been
(09:10):
told since a young age that Ineeded to write a book. And so back
during the pandemic, my schooldistrict came back and said that
they weren't interested inaccommodating my work from home order
anymore. And at that time, Iwas in my 2020 Bush Fellowship. And
so I did a big pivot of what Ithought my fellowship would be before
the pandemic, and then a bigpivot of once we learned what life
(09:32):
was like during it. And thenalso for me, even though other Bush
fellows got to kind of liveout parts of their original plan,
I wasn't. Cause I'mimmunocompromised. And that was my
first time of experiencinginvisible disabilities. And so that
brought me to, all right,well, I've got all this time. And
(09:53):
Bush was like, hey, if you'relearning how to write, the fellowship
can definitely be used towardsthat. And so I was like, yeah, this
is awesome. Like, I kind ofknow how to write. I'm kind of a
wordsmith. But learning aboutthe whole publishing world was just
flabbergasting because it wasjust like, you just have an idea,
you write it out, you findsomebody to put cover art, and it
(10:16):
just appears on Amazon andBarnes and Noble and all the places,
right? Just like that magicalthing. And it is so not. It's a lot
of hard work.
So.
And like I said earlier, I'vealways been an open book. Probably
sometimes a little bit tooopen if you talk to my family members.
But, you know, that part of itwasn't necessarily hard. Reliving
(10:42):
a lot of the valleys, relivingmy suicide ideation time, reliving
my finding of my faith to bemy own. Yes, during those times,
it was hard to relive it. Butfor me, they have been wounds that
are scars for so long. They'renot open, gaping wounds. And so it
(11:05):
was just a differentexperience coming back and sharing
those stories, gettingpermission from family and friends
to share their names or sharespecific stories or being honorable
to. To them, but then alsobeing real about. Real and authentic
about my story and about thestruggles. And a lot of times maybe
(11:27):
about things that they neverknew. Right. Because even your most
intimate friends or family orpartners or whatever, they still
don't really know your innerworkings. And even for ourselves,
right. Our Creator knows usmuch better than we even know ourselves.
So I love that journey. I lovebeing in the world of published authors.
(11:52):
I love being able to connectand encourage New authors, learning
from more veteran authors. Andso it's just powerful. And I believe
that everybody's story needsto be shared. And yet, after going
through that process, now Ireally understand why people don't
all go and publish 12 bookseach. Right? Like, one was a lot.
(12:15):
I hope that there's some morebrewing. But, yeah, it was a great
experience, and there's stillgreat things happening from it. And
it's super funny because inthis process, I was given the word
tapestry before I even wrote.And I wasn't sure what that would
mean and what that was about.And so when it became a part of the
subtitle, it's funny becausefriends that gave me permission to
(12:41):
use their names, they hadother friends, other family, other
co workers read the book, andthey're like, oh, Megan, I read your
book. And she's like, what areyou talking about? I didn't write
a book. And she's like, oh,Jenna's book. And I happen to be
like, a chapter and a half,right? Yeah. Yeah, your book. Your
book is really good. I didn'tthink about this or this or this.
And Megan's like, this isn'tmy book, but okay, you know, and
(13:05):
so. And then there's othertimes I'm, you know, get emails from
people or just talking topeople on the street, and they're
like, oh, yeah, this story.Tell me more about it. And I'm like,
oh, goodness, I shared that inthe book. Oh. Like, you know, when
it's your labor of love for awhole year, and then you go through
the editing process and allthe things, you tend to kind of forget
(13:26):
some of the aspects that arein it.
So you talked about thedifficulty of writing a book. What
were some of the lessons youlearned that other authors would
learn from your journey ofwriting a book?
Ah, great question. I wouldsay to have compassion and grace
for yourself. And even thoughI appreciated the publishing space
(13:49):
that I was going through andthe training and the coaching, ultimately
I had to listen to my ownvoice. I had to listen to my spirit
about things. And I had totake about three months off. Cause
I was just tired of hearing myown voice. I was tired of my own
story. I was tired of, youknow, just all those scripts. Like,
(14:10):
I needed other things, sobeing able to read other authors.
And that's when I fell in lovewith so many of the other disability
activists that have gonebefore me, like Judy Heumann and
Ed Roberts and, you know,like, just those big names that made
a huge legacy and a hugechange within My community and culture.
(14:31):
Um, and for me, and this mightseem odd, but I would rather read,
like, youth novels. And so Idelved a lot into, like, middle school
level books that were writtenwith the main character being disabled.
Right. Like, I didn't havethat as a kid. There was no representation
(14:52):
as a child, as a young adult,and even now as a middle aged woman.
Right. So I'd be like, I'mjust gonna devour this book. And
that helped me in my processto then be like, oh, let me look
at my story maybe in a littledifferent light. So that was very
helpful.
So have you thought aboutgoing back and writing in that space
(15:15):
for young teens who were goingthrough disabilities?
Yeah, I would love to takewithin my spokes and find those spaces
that maybe I didn't share moreof myself and share those times,
especially middle school.Like, that's where I found my faith.
That's where I went through alot of just hard, struggling things
(15:37):
that I think youth today canidentify with whether they're disabled
or not. Right. And a part ofme would also love to work with a
couple different illustratorsthat I know and create a children's
picture book to also, again,give hope and encouragement to kids
that are just maybe not seeingthemselves in their community or
(16:00):
not seeing that they have abright future and that there's a
purpose and a plan for theirlife and for their disability.
That's so critical. I'mcurious, since you're an advocate
for people with disabilities,what challenges are you seeing in,
like, even Minnesota todaythat are still really prevalent?
(16:21):
Oh, yeah. You know, we're 35years out from the Americans with
Disability act being, youknow, made into law. But in all honesty,
it was the greatest unfundedmandate the American government has
ever put in place. And so, youknow, even two weeks ago, I was in
this new space that I love togo to in a community I love to go
(16:43):
to, I should say. And thecornerstone on the building said
2024. And after I got up theramp, I couldn't find the power button
to get in the space. I saw thesticker on the door, but I couldn't
find the button. And just as Ifound the button, I also realized
that the back of my wheel waslike two inches from me going down
the exterior cement stairs.
Oh, no.
(17:04):
And I was like, I am a 38 yearveteran of being in a chair and I
about did bad things tomyself, like, what would a newer
person in their chair due orwhatever. And so that is just so
frustrating. Right. Becauseit's like, you think, oh, just old
buildings. They're notaccessible. They don't go above and
(17:27):
beyond the Americans withDisabilities Act. And I think a lot
of it is still, unfortunately,in some ways, just education. Right.
We believe that the code thatcomes with the ADA is the ceiling,
when really it's the floor.Right. It's the use of words. Right.
Like, I personally, again,there might be other people in my
(17:49):
community that like this word,but I cannot stand handicap anymore.
I have never loved golf. I amnot a golf term. I'm not gonna be
like, hey, Keith, you're abirdie. How's birdie doing today?
You know, like, it just feelsweird and odd and not. Not right.
Right. For me, Again, otherpeople might like it. For me, Not
a big fan. And so a lot of onpodcasts and in other spaces, my
(18:13):
biggest thing is disability isnot a bad word. So let's just use
it. Let's call it what it is.And a lot of times I use my education
as a background of. Sokindergartners. Well, probably preschoolers
now, right? Like, this is ared crayon. This is a blue crayon.
This is an orange crayon. Noone is better than the other. No
(18:34):
one is inherently good, andone is inherently bad. It's just
red. It's blue, it's orange.They're crayons. You color with them.
You make art. You show yourcreativity. And so, again, like,
sometimes we need labels tolearn. Right. Jenna uses a manual
wheelchair. Awesome. Jenna isdisabled. Awesome. Jenna has medical
constraints. Awesome. Jennaloves music. Awesome. Jenna's a trumpet
(18:57):
player. Awesome. Like, howabout we just say, Jenna is Jenna.
And yet I also understand thatat times, like, if you and I wanted
to go get coffee, you wouldhave to know Jenna's in a wheelchair.
The coffee shop needs to meetXYZ needs. Right?
Right.
Hopefully, someday we won'thave to think about that. You and
I can go anywhere, whetherwe're handicapping Birdie or, you
(19:21):
know, like, we can just go andbe and do like anyone else. And so,
again, words matter. We needto flip the scripts, and we just
have to have curious, honestconversations. Knowing that, especially
in my space, like, forlisteners, I just want to say, like,
(19:43):
coming to me as a veteran andknowing that I'm an open book and
that I'm a published authorand that I lead a nonprofit, can
probably guarantee you cancome and have an honest conversation
with me and ask hardquestions. Right? Going up to any
random stranger that you haveno idea about in Target or at A coffee
shop or wherever and be like,hey, what's wrong with you? Hmm?
(20:04):
Let's not do that. Right? Not. Okay.
Probably not. Probably not thebest way to go.
Hey, by the way, I see you'rein a chair. Do you know so and so
from Philadelphia? That's in a chair.
That's also in a chair.
Right, right. Like, let's not.
Do you have like a chair club?Yeah. No. You get that when you're.
When you're either minority orhave disability, people, like, well,
(20:26):
you must know so and so theyalso have this disease. Like, they
don't.
Right.
Like, everybody know everybodyfrom Louisiana. I don't know everybody
from Louisiana. I do not.
Right. And then sometimes Ijust need to flip it and be like,
so do you know all the peoplewith orange shoes? Or like something
that you know is identifyingthem. Like, so that other person
over there with glasses,what's their deal? You know?
(20:50):
Yeah, exactly.
For sure.
It's like being tall. It'sfunny. People always ask me, did
you play basketball? So, youknow, I got tired of hearing that
one. So I was with a shortperson. I'm like, so did you play
miniature golf? I mean, do wejust like, make assumptions?
Right? And. And a lot of thatis right, Like a. It's human nature,
right? So we can haveforgiveness and grace and make fun
(21:11):
of it or laugh together withit. But then on the flip side too,
it's like, well, but it's ouruncomfortability, right? It's because
we see difference and we don'tknow how to work across difference.
Or we don't know how to saythat or even just acknowledge that
in our own head of like, I'muncomfortable right now. Cause I've
(21:32):
never lived the life ofwhoever's in front of me or whatever
difference my brain is pickingup on. And a lot of times it happens
unconsciously. But then you'remaking that conscious decision to
say something stupid or dosomething stupid or not do something
that you should be doing.Right, Right, Exactly. We're a hot
mess. We're just not.
(21:52):
We are a hot mess. But I likewhat you said, though. I think it's
about having the grace to knowthat sometimes it's an honest, uncomfortable
conversation. And I always tryto approach people who ask questions,
sometimes out of curiosity,with that level of grace, so that
they don't feel. Cause I thinkit's an opportunity for us who are
(22:13):
in that space, whatever sideof the coin we are, to respond with
grace so that people don'tshut down in the future and isolate
someone else. So if you havethat ability to have grace and show
grace and mercy, it can go along way toward opening up further
conversations with other people.
Yep. And I think the educatorin me will never die. Right. Like,
(22:35):
when I went through my bigidentity crisis, I was like, I'm
no longer an educator. Butthen when I was given accessibility
educator as new verbiage forme, it was like, oh, yeah, this is
why my work stands out and isdifferent and why my nonprofit is
different. Because we're allconnected to the education world
in some ways, and we just comeat it with a different perspective.
(22:58):
Right. But then there aretimes when I'm like, I am not your
educator. Right. Like, thankyou. Nothing for us, without us.
That's a huge thing indisability culture. But in the same
respect, it's like, go Googleit and then go have an honest conversation
with an actual disabled personabout what you googled and learned.
But I don't need to be yourfirst step into. And then I try to
(23:22):
remind myself of that becauseof my privilege and be like, oh,
yeah, it's not your job,Keith, to teach me about X, Y, Z
of your culture that yourepresent. Right. Like, I should
do some of my own googling andmy own research and then be like,
so I just have a dumbquestion. Maybe it's not dumb, but
I'm. I'm curious.
Right?
(23:43):
Right. And if you don't feelcomfortable, and that's what I'm
trying to learn and also putinto my vocabulary bucket, every
day is like, I have a curiousquestion. But if now's not the time
or it's not appropriate or youdon't feel comfortable with it, you
can go tell me to go butter mypancakes. Right. Like, we're cool
with that. And I get thepoint. Right. Because there are just
(24:04):
times. And even just becauseI'm an educator doesn't mean I always
want to be educating. Like,figure it out, have conversations.
Yeah.
So tell us about yournonprofit you've mentioned a couple
of times. Tell us about whyyou started and tell us what you
tried to do.
Yeah. So above and beyond withyou has been a dream for a long time.
(24:25):
Again, you know, being aneducator, I'm like, how can I use
my summers? Like, I wanna goand tour the North Shore of Minnesota,
or I wanna go explore adifferent state, or I wanna go explore
this area, but I don't havethe funds. Right. As an educator
at that time, to go and usepersonal investments. And so I was
like, there's gotta be someway of making this all happen. Well,
(24:46):
then of course, the Internetexploded, social media content, people
became. And I was like, oh,okay. And I was like, so you can
make that happen. You can dothose things. And again, I'm like,
that doesn't feel true toJenna. Like, I'm wanting to be in
spaces, help educate and makesome change. Right? So I was like,
(25:11):
how do we do this? And thenlike I said earlier with, you know,
Ada being an awesome thing andyet unfunded, especially being a
rural person, it was like allthese mom and pop places, they have
no ability to put a ramp in.They have no ability to financially
reconstruct a whole bathroom.And so even though above and beyond
(25:31):
with youh isn't at thatfinancial spot yet where we want
to be, you know, in anothercouple of years, I hope in current
situations in our society, Ihave a little less hope. But I would
love to get to that point ofhow can we come alongside local business,
local industry, help you makeyour things accessible then for promote.
(25:53):
Because so often peoplebelieve that, you know, disability
community means that you'repoor or you're below poverty. And
yes, there is a huge part ofour community that is in those spaces.
I've been there before in myjourney. That needs to change 100%.
And yet there's also the otherside of that coin of there are people
(26:16):
that aren't. There are richpeople who are disabled. There are
tons of different definitions,labels, abilities that come within
disability culture. Anddisability is just a part of the
natural process. So as ourbaby boomers, as our aging population
start inheriting all thosenatural disability types and experiences,
(26:39):
the world around us is goingto change, and rightfully so, and
hopefully quicker than it hasin the last 35 years. But so again,
above and beyond stands forgoing above and beyond the code.
Like, let's logically, let'swork with community to make these
spaces great. Let's not have acornerstone of 2024 and have somebody
in a wheelchair almost fallover the stairs and can't get in
(27:02):
your building. Right? So wecan go above code. We can do beyond
what these things say. And thewith you is we believe in being with
them. Like we're makingrelationships. This isn't just like
a, hey, hire us to consultyou. Hey, hire us to come and do
a wheel through assessment.But like, no, we're in this for the
long haul. Like, let's livelife together. Let's make this better.
(27:26):
And then the U, Capital U is anod to my last name. Cause little
kindergartners couldn't sayUdenberg. Adults can't. I sometimes
even can't. So. And if theydid get it out, I would already be
like down the hall and aroundthe corner and I went to your little
five year old, you know, Ms.Hootenberg. And then, you know, tears
and all the bad things. So thekids early on in my career changed
(27:48):
my name to Miss you. And soit's just a nod to accessibility
education and that, that we're together.
That's awesome. You also havea column, local view from 4 foot
2. Tell us about what inspiredyou to start that.
Yeah, so our community had achronicle when I was a kid and I
(28:11):
thought that was cool. I wasan editor for our high school newspaper
back in the day. And then, youknow, rural newspapers just kind
of dried up for a while. Butthen an awesome lady came into her
own within our community andsaid, let's do this thing. And so
she became the editor and sheis an ally and also a caregiver of
(28:36):
somebody with a disability.And so she's like, hey, do you want
to write a column? I don'tknow what this means. I don't know
what it's going to look like.But I want your voice, I want your
stories, I want yourperspective and I value this. And
so what do you think? I waslike oof weekly doing all the things.
(28:58):
That's a lot. How about everyother week? You know, and it's just
been amazing because every, Iwould say almost every week when
I'm out in the community,people will stop me and of course
they know who I am, but I haveabsolutely no idea who they are.
Right. Sometimes I do, butmore often than not. But they just,
(29:23):
you know, share. They're justencouraging of. Hey, you shared this
story about this waterfall. Ididn't know at my age that I could
traverse out to this localwaterfall and see it. That there's
a bench there or that there'sthis or that or I didn't know that
I was kind of self sabotagingin the words that I was using about
(29:46):
myself or about the conditionthat I'm now finding myself in. And
so that just keeps you fuelingthe fire to do this work. And again,
you know, I'll be honest thatsometimes I get tired of my own perspective.
I get tired of my own voice,my own story. And so I love when
(30:07):
other people are able to sharetheir stories and their experiences
around accessibility, aroundthe good and the bad and the things
that are locally important tous and also globally and societally
that's so cool.
So tell us again, who do youhope reads within my spokes, and
(30:27):
how do you hope this impacts them?
I would hope that anybody thathas curiosity of someone else's lived
life would read it. I hopethat they would share it. I hope
that they would review it.Right. It's all about the different
algorithms and sharing thatwork. And again, in this work, like,
(30:50):
yes, I'm being the mouthpiececurrently. I'm being the face to
it currently. But it's notjust my story. Right. It's our story
as a community, it's our storyas a society. And all of the funds
that come from the book salesgo directly into the work of above
and beyond with you. So makingspaces and people more accessible,
(31:13):
more human, moreunderstanding, and doing better because
we know better.
Awesome. I'm gonna ask you myother favorite question. What do
you want your legacy to be?
Oh, I loved seeing this one. Ithink it boils down to, you know,
my parents always instilled agood work ethic in us kids, and it
(31:36):
was always, leave a spacebetter when you leave it than how
you found it. And in the lastcouple years of this work, I've really
changed my mission to be notonly for spaces, but for people.
I want people to be better,more healthy, more loved, more full
(31:58):
of laughter and joy afterwe've spent time together than how
I found them. And what'sawesome is when they also do that
in return for me.
That's great. So in season sixof the podcast, we do something special.
Now, it's a surprise question.Pick a number between 1 and 10 for
your surprise question.
(32:19):
Ooh, number 7. The mostcomplete number. How about that?
That's a very, very biblicalquestion. Thought about that. Okay.
If you could look at throughone person's email without them knowing
it, whose email would you look through?
Interesting. Hmm. I think Iwould go to the mother of disability
(32:49):
advocacy, which is Judith Heumann.
Okay.
Because she would have lots ofpeople reaching out to her for wisdom
and other just random storiesbecause she was just a real deal.
A real deal Jewish woman wholived a lot of life. And. Yeah, I
think that'd be kind of fun to see.
(33:10):
That's neat. So give us yourcontact. Where can people find you
on social media? Where canthey buy your book? And where can
they find out about your nonprofit?
Yeah. So above and beyond withyouh CapitalYou.org is our website,
and there's links there to buythe book through Amazon or wherever
you purchase your books. Also,my audiobook should be coming out
(33:32):
soon, so hopefully that willbe out when the show drops. You can
find us on LinkedIn, Instagramand Facebook and we just look forward
to hearing from folks andconnecting and doing even more work
together.
Well, thank you so much. Jennareminds us that strength isn't always
(33:52):
loud, it can be seated, steadyand full of grace. Her story is a
testament to the power oflived experience and her work is
paving the way for a moreinclusive, compassionate world. Thank
you Jenna for being a bridgebuilder and sharing your journey
with us. We welcome you tofollow Jenna and pick up her book
and donate to her contributionor her charity if you think that's
(34:14):
a place for you. So keepliving the life and keep building
bridges.
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