April 2, 2025 • 27 mins
Disability advocacy transcends ramps and automatic doors—it's about creating a world where everyone belongs in every aspect of community life. Jenna Udenberg joins us to share her powerful journey from diagnosis with juvenile rheumatoid arthritis at age seven to becoming an author, disability advocate, and accessibility educator.
Diagnosed in the late 1980s and using a wheelchair since age eight, Jenna navigated a world before the Americans with Disabilities Act established basic protections. Despite these challenges, she built a 19-year music education career before pivoting toward accessibility advocacy. As a 2020 Bush Fellow, the pandemic forced her to reimagine her plans, ultimately leading to writing her book "Within My Spokes: A Tapestry of Pain, Growth and Freedom" and founding her nonprofit, Above and Beyond With U.
Jenna challenges us to recognize that disability is simply part of the human experience—not something to fear or pity. With approximately 24-29% of Americans identifying as disabled, it's a community anyone might join through accident, injury, or medical condition. Her work focuses on creating spaces that go beyond minimum compliance, asking critical questions: "Can we use the restroom? Can we grab coffee? Can we be employees here?" These questions shift the focus from technical requirements to meaningful inclusion.
Through stories like playing trumpet left-handed against her teacher's advice, Jenna illustrates how disability often sparks innovation and resilience. She leaves us with a powerful challenge: Don't just call her story "inspirational"—ask yourself what you're inspired to actually change. Visit aboveandbeyondwithU.org to learn more about creating spaces where everyone truly belongs.
Want to be a guest on Living the Dream with Curveball? Send Curtis Jackson a message on PodMatch, here: https://www.podmatch.com/hostdetailpreview/1628631536976x919760049303001600
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Episode Transcript
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Speaker 1 (00:00):
Welcome to the Living the Dream Podcast with
Curveball, if you believe youcan achieve.
Welcome to the Living the Dreamwith Curveball Podcast, a show
where I interview guests thatteach, motivate and inspire.
(00:25):
Today, we're going to betalking about disability
advocacy, as I am joined byauthor, disability advocate and
accessibility educator, jennaUtenberg.
Jenna was diagnosed withjuvenile arthritis at just seven
years old.
Diagnosed with juvenilearthritis at just seven years
(00:50):
old, you know, in 2020, she wasa Bush fellow.
We'll be talking to her aboutwhat that is, and we're going to
be talking to her abouteverything that she's doing to
help create and make accessiblespaces for everyone.
So, jenna, thank you so muchfor joining me today.
Speaker 2 (01:04):
Yeah, thank you so much for having me, Curtis.
Speaker 1 (01:06):
Why don't you start off by telling everybody a
little bit about yourself?
Speaker 2 (01:11):
Yeah, so, as you shared, I was diagnosed at age
seven with juvenile rheumatoidarthritis and I was a manual
wheelchair user since age eight,so my disease progressed pretty
rapidly.
I grew up in a small rural townon the beautiful shores of Lake
Superior, on the North Shore inMinnesota.
That came with lots ofdifferent challenges.
(01:32):
Being back in 1988 was mydiagnosis date, so a couple of
years before lack of a betterword fights to gain access, to
gain rights, to gain equalaccess to things that my peers
(01:55):
always had.
I went to a local universityfor two bachelor's degrees.
I have one in vocal musiceducation and one in
instrumental music education.
I went on to have a 19-yearcareer as a music educator, both
in a private studio, in charterschools, in parochial schools
(02:16):
and in public schools.
I am a 2017 Blandin alum, sothat was for community
leadership training.
Like you said, I'm a 2020 Bushfellow, looking forward to
talking more about that and thatamazing opportunity and how
that changed my life.
And when I'm not out on thetrail in my Firefly, that makes
(02:38):
my manual wheelchair into a likea three wheeled electric kind
of scooter, kind of like ane-bike, but with a wheelchair
you can find me playing cardgames and board games with
friends and family.
You can find me coaching LegoRobotics, which has been a
passion of mine for the last 12years, and you can just find me
(02:58):
reading books and doing all thethings and having great
conversations with people.
Speaker 1 (03:04):
Yeah, let's go ahead and get into that.
2020 Bush Fellow Kind ofexplain to listeners what that
is and how it did change yourlife.
Speaker 2 (03:12):
Yeah, so the Bush Fellowship, the foundation,
resides in Minnesota, but thefellowship is for anybody that
lives in North Dakota, southDakota, minnesota or the 23
tribal nations that are in thosegeographical locations.
And when I went through it in2019 to be selected as a 2020
(03:35):
Bush Fellow, there was I believeit was like a four-step
application process and reallydeep diving questions around
your self-reflection, aroundyour leadership, around the
things that encourage you andinspire you to continue on as a
community leader, and also thethings that are challenges or
(03:56):
hindrances or barriers that youneed to overcome, or maybe
self-care, soul care typesituations.
And so with it, you can do alike a pre-described fellowship,
meaning you could use it forfuture education or further
education, so getting anotherbachelor's, going on for a
(04:16):
master's, working on a PhD orcertifications, or you can kind
of go on your own self-adventure, which is what I chose.
And so 2019, everything wasnormal, right.
So the tagline for BushFellowship is to think bigger
and think differently, and so inthat application process, it
(04:37):
had me, who had never flownbefore, dreaming of wheeling in
places that the civil rights anddisability rights activists
have walked and wheeled, and soI wanted to go to Berkeley,
california, of course, right.
See where Section 504 came tobe after months of sit-ins.
(05:00):
And see where Judy Heumannrolled.
And see where Ed Roberts and beat UC Berkeley campus and all
the amazing accessibility thatthey have that many places in
the United States and worldwidedon't have.
I wanted to go to Bradford Woods, one of the leading rehab
centers in the Midwest.
(05:20):
I wanted to travel to acommunity in Florida that
completely revamped all of theirrestaurants and their whole
hospitality industry.
So in their small community,everything had power doors, all
bathrooms were accessible, wheredisabled advocates that I know
have gone personally and peoplehave asked them so what do you
think about our accessibility?
(05:41):
And they felt weird anddifferent and they couldn't
figure out what that weird anddifferent thing was.
But it was because every needwas met and they didn't have any
barriers they had to overcomewhile they're on vacation.
And I wanted to travel to themost accessible country in the
world, which is Sweden.
They have earned thatdistinguishing award many, many
(06:04):
years.
And so here's this you knowyoung woman from the North
shores of Minnesota who hadnever flown before and who had
made these four ginormous plans,and we were told in I believe
it was May of 2020, that we wereBush fellows, and then it was
announced to the world in June,and we all know that in March
(06:25):
the whole world changed, andespecially for someone like
myself with not only my physicaldisabilities, but I also have
immunocompromisation both fromdiabetes and from multiple
medications that I'm on for someof my medical conditions, and
so it was the first time that Ihad the experience of what it's
like to have an invisibledisability, because I'm so used
(06:47):
to everybody seeing mywheelchair and what that means,
but a lot of times people don'tunderstand those next levels of
invisible disabilities.
So it was a very pivotal time inlife.
During that time, I also wastold from my school district
that they were no longerinterested in accommodating my
(07:07):
work from home order work fromhome order, sorry and that kind
of led to an identity crisis awee bit, you know.
After being a music teacher for19 years, that was a hard pill
to swallow, but that's whereaccessibility educator came from
a hard pill to swallow, butthat's where accessibility
(07:28):
educator came from.
Okay, well, explain to listenerswhat an accessibility educator
is.
It's kind of a term that I kindof coined on my own or that was
kind of given to me.
So the way that I view it is, Ifelt in that during that
identity crisis, you know, Ifelt like I was never an
(07:49):
educator again.
And that's not true, becauseonce you're an educator, you're
always an educator, and we justlook at the the world
differently.
We look at it from multiplehats, different lenses,
different viewpoints, asking,curious and wanting spaces to be
equitable, maybe more so thanthe common person.
And we typically have a moreself-reflective practice as well
(08:13):
in the educator world, becausewe're always trying to do our
craft better each day, eachquarter, each classroom, for
each kid and each family.
So then, of course, theaccessibility part for me is
more based in my life story ofbeing a mobility disabled person
.
I never want to speak fordisability culture and community
(08:37):
as a whole because I can't liveand experience all of the
different disabilities that arethere, but I can be a conduit
for others to hear otherpeople's stories and embrace
that everybody's story isimportant, disabled or
non-disabled.
Speaker 1 (08:53):
Okay, you also said you coach Lego robotics, so
explain to listeners what thatis.
Speaker 2 (09:02):
Yeah, it was an unlikely pairing.
I had a retired engineer comeinto my music room one day and
he thought I was going to belike a math or a science teacher
.
And he came in and he saw allthese xylophones and recorders
and all these typical generalmusic classroom instruments and
he's like, wait, you're not ascience or math teacher.
(09:23):
I I said, nope, I'm music andI'm the cog of the wheel that
brings all of the differentdisciplines of learning together
.
And who knew that I'd bestarting my 13th season as a
FIRST Robotics, lego RoboticsCoach?
And so FIRST is aninternational nonprofit
organization that provides, Ibelieve it's, four different
(09:44):
levels of robotics.
So many listeners that are inthe United States and actually
throughout the world wouldprobably know FIRST Robotics
Competition.
So that's like in our world,the high school level of the
bigger robots that people youknow work together with industry
leaders and sorry, I can'tremember my word right now, but
(10:04):
they create using all of thedifferent metal pieces and the
gear structures and very highlevel coding and you know
they're doing all the weldingand all those kinds of things to
create the robots.
My level would be the nextlevel down, which is first
challenge.
And so every season, thebeginning of August, its first
challenge.
And so every season, thebeginning of August,
(10:25):
internationally, it's announcedwhat the theme for the season is
going to be.
So for this, last year, thetheme was submerged, and so
every Lego robotics team has tocome up with a real world
problem and a real worldsolution.
So this year it was figuringout what do oceanic explorers
(10:46):
encounter as barriers in theirresearch and what are things
that these middle school earlyhigh school kids can create to
help them, that these middleschool, early high school kids
can create to help them fixthose problems that they
encounter.
And then another part of it isthe core values.
So we have practiced the sixcore values that FIRST gives us.
So it's discovery, fun,teamwork, innovation, inclusion.
(11:12):
And there's one more I, but I'min the off season, but there's
six of them and it's great.
It's one of the most importantparts of the program for me.
And then comes a robot game,which everybody thinks is like
the most cool part, because youget a specific map that has
different colors, differentthemes.
So on this board you saw lotsof waves and bubbles and coral
(11:36):
and you know typical things thatyou would expect to see in the
underwater and then on the mat.
You get about anywhere from3,000 to 5,000 Lego pieces and
you get build instructions.
So you have to make anywherefrom like 12 to 15 mission
models and then your team has todesign a robot and figure out
how they can complete as manymissions as they can in two and
(11:59):
a half minutes.
And then they also have to do arobotic or a robot design
presentation for five minutes infront of judges and then get 10
minutes of question and answersand that's a similar format for
the innovation project of theresearch project.
So it's a very intense program.
Our world usually goes from likeAugust to March or April,
(12:21):
depending on how far our teamadvances at the different
regional, sectional and stateand world's levels.
But it's a great program.
It helps young peoplecritically think.
It helps them work together.
It helps them learn how toproblem solve, helps young
people critically think.
It helps them work together.
It helps them learn how toproblem solve.
It helps them learn how tosolve disagreements, work with
adults, work on interview skills, presentation skills.
(12:42):
It's a lot but it's reallyworth it and it kind of makes a
microcosm of a family in betweenevery team.
And then we have outreach wherewe get to know other teams and
just really celebrate the spiritof FIRST.
Speaker 1 (12:57):
Okay, well, I know in your bio you talk about how
disability is not a bad word, soexplain to the listeners why
you feel that way.
Speaker 2 (13:08):
So everybody experiences disability in some
way.
With 24 to 29% of the Americanpopulation identifying as
disabled, that number growsevery day, and so disability
culture and community is themost diverse minority group, and
anyone can enter our cultureand community at any moment,
(13:29):
whether it's through accident orinjury or medical condition.
Some, you know all of us willacquire a disability, more than
likely, at some point of ourlife or will be deeply impacted
by someone we love or work with.
And so so often disability hashas been a bad word.
(13:50):
Society has turned it intosomething that we lack,
something that we are not a partof, and so our community now is
saying that it's not a bad word.
It's something we allexperience in some way or
another, and we all have needs,and there's nothing special
about our needs, right?
Speaker 1 (14:24):
We all have the need for belonging, we all have the
need for community, we all havethe need for food and restrooms
and safe places, and so it'sreally just flipping the script
of what's positive and inclusionis important.
And the second part is why doyou feel you know people should
go above and beyond the ADA code?
Speaker 2 (14:41):
That's great.
So accessibility and inclusionare huge, because without either
or both of them, like I saidearlier, you don't have a sense
of community, you don't have asense of belonging earlier, you
don't have a sense of community,you don't have a sense of
belonging.
So often in my work with Aboveand Beyond With you, my
nonprofit, so often people arefocused on getting mobility
disabled people in the door,whether it's a ramp, whether
(15:04):
it's a power button, those arekind of the big ones, but then a
lot of times they do thosethings and then I'm in their
spaces and I say, okay, so nowwhat?
And it kind of puts them backon their heels because they go.
We haven't thought about that.
So can we use the restroomthere?
Can we grab a cup of coffee?
(15:25):
Can we go in the staff loungearea and make a lunch?
Can we be an employee in yourspace?
So there's a lot of next stepsin what we are thinking, and so
therefore, above and beyond theADA code, the spirit of ADA when
(15:45):
it came into being was part ofcommunity employment, all of
those things the spirit of theADA was.
Here's some general ideas.
Here's this thing calleduniversal design.
Here's how we can help peoplewith different looking needs,
(16:08):
different time needs, differentphysical needs, to be not just a
contributing part of society,not just people that can be
gainfully employed, but, like,truly a part of all parts of
community.
And so, with Above and Beyond,with you, we work hard at trying
to get that message across,that we want commitment to the
(16:30):
ADA, we want commitment tomaking things accessible and
inclusive for all people, andnot just a checklist so you can
feel good about yourself or notgood about yourself, but that
we're working together inpartnership to make sure that we
are doing the best thingspossible so everybody can be a
part of life and the things thatare going on in these spaces
(16:51):
and places.
Speaker 1 (16:54):
Well.
Share a challenging story withlisteners from your life.
You know that helped you andencouraged you to grow and move
forward.
Speaker 2 (17:05):
There are so many, I would say the one I like to tell
the most is I was a trumpetplayer and early on in my sixth
grade year we had a phenomenaltrumpet teacher and a band
director here in our small townand I started experiencing where
(17:27):
my right elbow was starting tofuse, which meant my elbow, by
way of the arthritis, was superpainful and it didn't want to
bend anymore, and so naturally Iwas just used to accommodating
and adapting in my brain becauseI'd been doing it already for
five, six years, and so Istarted playing the trumpet
left-handed.
(17:47):
And he came to me one day and hesaid we don't do that here,
there is no such thing as aleft-handed trumpet player.
And I perceived to use mystubbornness to prove him wrong,
and so after a couple of yearshe actually ended up retiring
and by the time I was in eighthgrade I had an eighth grade band
director who invested a lot inme, not only in eighth grade but
(18:11):
throughout my high schoolcareer, and now she's a great
friend and definitely still amentor and an important part of
my tapestry of my life.
And I talk about that in my book, a lot about how it's not just
stories about me, but it's astory about all the people who
make up who I am and the lifethat I've been given.
And so she inspired me tobecome a band director, not
(18:33):
because of the music history orthe music theory or that I love
certain composers, but for thefact that she treated me as
someone that had value and thathad meaning, and that it didn't
matter if I was the firsttrumpet player, which I was, or
if I was the last trumpet player, because every person has that
(18:54):
musical ability, every personhas worth.
Person has that musical ability, every person has worth, and
she just really shaped who Ibecame today and who.
I hope that I've inspired myformer students and my current
robotics kids to push fartherand to push, push deeper and to
find more about yourself,because you are important and
your story is needed in thisworld and your voice is needed
(19:15):
and your skills and talents areneeded.
Speaker 1 (19:19):
Speaking of your book , go ahead and talk about that
book, you know.
Let listeners know what theycan expect when they read it,
why you decide to write it andwhere they can get it from.
Speaker 2 (19:29):
Yeah, the book is titled, Within my Spokes, a
Tapestry of Pain, growth andFreedom.
I wrote it or it was publishedin July of 2023, and you can get
it on Amazon or anywhere whereyou buy your books.
It comes in Kindle or ebook orpaperback and I'm hoping to
release the audiobook thissummer.
(19:51):
So in writing this book, sinceI was a kid, in all my different
medical medical settings, I'vealways had providers say Johnna,
you need to write a book likethe amount of life that you had
lived, even as a young child.
There's funny stories, there'spainful stories, there's there's
stories to to learn from.
And so when I was going throughthe Bush fellowship and my whole
(20:12):
life turned upside down becauseobviously I wasn't able to go
and do any of those trips, I hadto figure out how to use that
fellowship time, those funds, tomake a bigger mark.
And at that time I had seen Idon't want to say an
advertisement, but maybe awebinar about how now, instead
(20:33):
of using business cards, a lotof people are using a book tell
your story.
Because you don't have time togo and have 300 coffee or lunch
dates with people to tell yourstory, but you might have time
to write a book within sixmonths to a year and then a lot
of people get to know your storyand then they can reach out and
you can make those partnershipsand connections by way of story
(20:55):
.
And so I embraced that and wenton the self-publishing journey
and my fellowship was able topay for some of the writing,
training and classes andcoursework that I was able to do
in the process and I had agreat coach at the beginning of
my journey there and she gave methe permission to only write
(21:16):
the things that I felt like Ihad mental and emotional
capacity to write on any givenday.
So, being a type A, I didn'thave to write everything
chronological order.
I could jump around in my storyand write the good things on
the happy days and the hardthings on the hard days.
And I will say that in thewriting process it has been
(21:37):
therapeutic to get to anotherlevel of maturity in my
disability, another level ofacceptance in my disability and
another level of passion toright the wrongs that happened
to me and my family growing upbefore the ADA and early ADA
days, before the ADA and earlyADA days, and try to make it
(22:01):
better for the families andespecially the young people that
are facing the disabled life inthe areas that I'm currently
living.
Speaker 1 (22:08):
Well, tell us about any upcoming projects that
you're working on that listenersneed to be aware of.
Speaker 2 (22:16):
So I am continually working with Above and Beyond
With you and listeners can findus on Facebook and LinkedIn and
Instagram as well as at ourwebsite, which is Above and
Beyond With you, capital U, andthe title of the nonprofit came
out of, like I said before,above and Beyond Code.
But the With you is a nod to mymusical career because, as you
(22:40):
can know by my last namespelling, you can only imagine a
little five year old orkindergartner trying to say hey,
miss Udenberg.
So they kindly changed my nameto Miss U.
So it's above and beyond withyou as a capital U.
But it also stands for, moreimportantly, that our nonprofit
is a lot of people tied to theeducation world, whether they
(23:01):
are paraprofessionals oreducators or adaptive PE
teachers or occupationaltherapists in the school setting
.
We all come at the work that wedo as a nonprofit from that
educational lens and we want itto be a partnership with all the
people we work with, whetherit's individuals or small
businesses or state agencies orbeyond.
(23:23):
We want that connection to be alearning one for both sides and
being mutually beneficial, notjust a drop in the pan of a
one-time connection with theentities or agencies, connection
with the entities or agencies.
Speaker 1 (23:39):
Okay, Well, you answered my next question Throw
out your website Above andBeyond With you capital U.
So close us out with some finalthoughts.
Maybe, if that was somethingthat I forgot to touch on, that
you would like to touch on anyfinal thoughts you have for the
listeners and give out thatwebsite one more time.
Speaker 2 (23:59):
Yeah.
So the website iswwwaboveandbeyondwithyouorg.
There's a contact us format onthere.
There's more where you can seethe services we offer.
There's also a link there toget my book within my spokes.
Final thoughts I guess I wouldsay Embrace where you're at in
(24:21):
your disability journey, whetherit's you yourself are disabled,
someone you loved is, or maybeit's a neighbor, someone you
just kind of know of.
Embrace curious questions andtry not to make assumptions, and
when we know that we're makingassumptions or living out of a
bias, that we would take thatextra time to really examine
(24:42):
that and then also take times ofchange.
So many times people tell me oh, jonna, you're so inspirational
and I want to come back and say, well, thanks for that.
But that word seems verymisguided sometimes, and so my
next step is always like so whatare you going to?
What are you inspired to do?
What are you inspired to change?
What are you inspired tocontinue to do?
(25:04):
That is a good thing, that'smaking life better for others
and that we can all live incommunity together.
Speaker 1 (25:12):
All right.
Ladies and gentlemen, Above andBeyond, with you, capital U dot
O-R-G.
Please be sure to check outJenna's book, Check out
everything that she's up toFollow, rate review, share this
episode to as many people aspossible.
Jump on your favorite podcastapp.
Follow the show, Check it out,Share it.
If you have any guests orsuggestion topics.
(25:35):
The show has a new website.
Please visitwwwcurveball337.com.
Thank you for listening andsupporting the show.
Jenna, thank you for all thatyou do.
Thank you for joining me.
Speaker 2 (25:51):
Thank you so much, curtis, it's been great.
Speaker 1 (25:54):
For more information on the Living the Dream with
Curveball podcast, visitwwwcurveball337.com.
Until next time, keep livingthe dream.
Welcome to the Living the Dream Podcast with
Curveball, if you believe youcan achieve.
Welcome to the Living the Dreamwith Curveball Podcast, a show
where I interview guests thatteach, motivate and inspire.
(00:25):
Today, we're going to betalking about disability
advocacy, as I am joined byauthor, disability advocate and
accessibility educator, jennaUtenberg.
Jenna was diagnosed withjuvenile arthritis at just seven
years old.
Diagnosed with juvenilearthritis at just seven years
(00:50):
old, you know, in 2020, she wasa Bush fellow.
We'll be talking to her aboutwhat that is, and we're going to
be talking to her abouteverything that she's doing to
help create and make accessiblespaces for everyone.
So, jenna, thank you so muchfor joining me today.
Speaker 2 (01:04):
Yeah, thank you so much for having me, Curtis.
Speaker 1 (01:06):
Why don't you start off by telling everybody a
little bit about yourself?
Speaker 2 (01:11):
Yeah, so, as you shared, I was diagnosed at age
seven with juvenile rheumatoidarthritis and I was a manual
wheelchair user since age eight,so my disease progressed pretty
rapidly.
I grew up in a small rural townon the beautiful shores of Lake
Superior, on the North Shore inMinnesota.
That came with lots ofdifferent challenges.
(01:32):
Being back in 1988 was mydiagnosis date, so a couple of
years before lack of a betterword fights to gain access, to
gain rights, to gain equalaccess to things that my peers
(01:55):
always had.
I went to a local universityfor two bachelor's degrees.
I have one in vocal musiceducation and one in
instrumental music education.
I went on to have a 19-yearcareer as a music educator, both
in a private studio, in charterschools, in parochial schools
(02:16):
and in public schools.
I am a 2017 Blandin alum, sothat was for community
leadership training.
Like you said, I'm a 2020 Bushfellow, looking forward to
talking more about that and thatamazing opportunity and how
that changed my life.
And when I'm not out on thetrail in my Firefly, that makes
(02:38):
my manual wheelchair into a likea three wheeled electric kind
of scooter, kind of like ane-bike, but with a wheelchair
you can find me playing cardgames and board games with
friends and family.
You can find me coaching LegoRobotics, which has been a
passion of mine for the last 12years, and you can just find me
(02:58):
reading books and doing all thethings and having great
conversations with people.
Speaker 1 (03:04):
Yeah, let's go ahead and get into that.
2020 Bush Fellow Kind ofexplain to listeners what that
is and how it did change yourlife.
Speaker 2 (03:12):
Yeah, so the Bush Fellowship, the foundation,
resides in Minnesota, but thefellowship is for anybody that
lives in North Dakota, southDakota, minnesota or the 23
tribal nations that are in thosegeographical locations.
And when I went through it in2019 to be selected as a 2020
(03:35):
Bush Fellow, there was I believeit was like a four-step
application process and reallydeep diving questions around
your self-reflection, aroundyour leadership, around the
things that encourage you andinspire you to continue on as a
community leader, and also thethings that are challenges or
(03:56):
hindrances or barriers that youneed to overcome, or maybe
self-care, soul care typesituations.
And so with it, you can do alike a pre-described fellowship,
meaning you could use it forfuture education or further
education, so getting anotherbachelor's, going on for a
(04:16):
master's, working on a PhD orcertifications, or you can kind
of go on your own self-adventure, which is what I chose.
And so 2019, everything wasnormal, right.
So the tagline for BushFellowship is to think bigger
and think differently, and so inthat application process, it
(04:37):
had me, who had never flownbefore, dreaming of wheeling in
places that the civil rights anddisability rights activists
have walked and wheeled, and soI wanted to go to Berkeley,
california, of course, right.
See where Section 504 came tobe after months of sit-ins.
(05:00):
And see where Judy Heumannrolled.
And see where Ed Roberts and beat UC Berkeley campus and all
the amazing accessibility thatthey have that many places in
the United States and worldwidedon't have.
I wanted to go to Bradford Woods, one of the leading rehab
centers in the Midwest.
(05:20):
I wanted to travel to acommunity in Florida that
completely revamped all of theirrestaurants and their whole
hospitality industry.
So in their small community,everything had power doors, all
bathrooms were accessible, wheredisabled advocates that I know
have gone personally and peoplehave asked them so what do you
think about our accessibility?
(05:41):
And they felt weird anddifferent and they couldn't
figure out what that weird anddifferent thing was.
But it was because every needwas met and they didn't have any
barriers they had to overcomewhile they're on vacation.
And I wanted to travel to themost accessible country in the
world, which is Sweden.
They have earned thatdistinguishing award many, many
(06:04):
years.
And so here's this you knowyoung woman from the North
shores of Minnesota who hadnever flown before and who had
made these four ginormous plans,and we were told in I believe
it was May of 2020, that we wereBush fellows, and then it was
announced to the world in June,and we all know that in March
(06:25):
the whole world changed, andespecially for someone like
myself with not only my physicaldisabilities, but I also have
immunocompromisation both fromdiabetes and from multiple
medications that I'm on for someof my medical conditions, and
so it was the first time that Ihad the experience of what it's
like to have an invisibledisability, because I'm so used
(06:47):
to everybody seeing mywheelchair and what that means,
but a lot of times people don'tunderstand those next levels of
invisible disabilities.
So it was a very pivotal time inlife.
During that time, I also wastold from my school district
that they were no longerinterested in accommodating my
(07:07):
work from home order work fromhome order, sorry and that kind
of led to an identity crisis awee bit, you know.
After being a music teacher for19 years, that was a hard pill
to swallow, but that's whereaccessibility educator came from
a hard pill to swallow, butthat's where accessibility
(07:28):
educator came from.
Okay, well, explain to listenerswhat an accessibility educator
is.
It's kind of a term that I kindof coined on my own or that was
kind of given to me.
So the way that I view it is, Ifelt in that during that
identity crisis, you know, Ifelt like I was never an
(07:49):
educator again.
And that's not true, becauseonce you're an educator, you're
always an educator, and we justlook at the the world
differently.
We look at it from multiplehats, different lenses,
different viewpoints, asking,curious and wanting spaces to be
equitable, maybe more so thanthe common person.
And we typically have a moreself-reflective practice as well
(08:13):
in the educator world, becausewe're always trying to do our
craft better each day, eachquarter, each classroom, for
each kid and each family.
So then, of course, theaccessibility part for me is
more based in my life story ofbeing a mobility disabled person
.
I never want to speak fordisability culture and community
(08:37):
as a whole because I can't liveand experience all of the
different disabilities that arethere, but I can be a conduit
for others to hear otherpeople's stories and embrace
that everybody's story isimportant, disabled or
non-disabled.
Speaker 1 (08:53):
Okay, you also said you coach Lego robotics, so
explain to listeners what thatis.
Speaker 2 (09:02):
Yeah, it was an unlikely pairing.
I had a retired engineer comeinto my music room one day and
he thought I was going to belike a math or a science teacher
.
And he came in and he saw allthese xylophones and recorders
and all these typical generalmusic classroom instruments and
he's like, wait, you're not ascience or math teacher.
(09:23):
I I said, nope, I'm music andI'm the cog of the wheel that
brings all of the differentdisciplines of learning together
.
And who knew that I'd bestarting my 13th season as a
FIRST Robotics, lego RoboticsCoach?
And so FIRST is aninternational nonprofit
organization that provides, Ibelieve it's, four different
(09:44):
levels of robotics.
So many listeners that are inthe United States and actually
throughout the world wouldprobably know FIRST Robotics
Competition.
So that's like in our world,the high school level of the
bigger robots that people youknow work together with industry
leaders and sorry, I can'tremember my word right now, but
(10:04):
they create using all of thedifferent metal pieces and the
gear structures and very highlevel coding and you know
they're doing all the weldingand all those kinds of things to
create the robots.
My level would be the nextlevel down, which is first
challenge.
And so every season, thebeginning of August, its first
challenge.
And so every season, thebeginning of August,
(10:25):
internationally, it's announcedwhat the theme for the season is
going to be.
So for this, last year, thetheme was submerged, and so
every Lego robotics team has tocome up with a real world
problem and a real worldsolution.
So this year it was figuringout what do oceanic explorers
(10:46):
encounter as barriers in theirresearch and what are things
that these middle school earlyhigh school kids can create to
help them, that these middleschool, early high school kids
can create to help them fixthose problems that they
encounter.
And then another part of it isthe core values.
So we have practiced the sixcore values that FIRST gives us.
So it's discovery, fun,teamwork, innovation, inclusion.
(11:12):
And there's one more I, but I'min the off season, but there's
six of them and it's great.
It's one of the most importantparts of the program for me.
And then comes a robot game,which everybody thinks is like
the most cool part, because youget a specific map that has
different colors, differentthemes.
So on this board you saw lotsof waves and bubbles and coral
(11:36):
and you know typical things thatyou would expect to see in the
underwater and then on the mat.
You get about anywhere from3,000 to 5,000 Lego pieces and
you get build instructions.
So you have to make anywherefrom like 12 to 15 mission
models and then your team has todesign a robot and figure out
how they can complete as manymissions as they can in two and
(11:59):
a half minutes.
And then they also have to do arobotic or a robot design
presentation for five minutes infront of judges and then get 10
minutes of question and answersand that's a similar format for
the innovation project of theresearch project.
So it's a very intense program.
Our world usually goes from likeAugust to March or April,
(12:21):
depending on how far our teamadvances at the different
regional, sectional and stateand world's levels.
But it's a great program.
It helps young peoplecritically think.
It helps them work together.
It helps them learn how toproblem solve, helps young
people critically think.
It helps them work together.
It helps them learn how toproblem solve.
It helps them learn how tosolve disagreements, work with
adults, work on interview skills, presentation skills.
(12:42):
It's a lot but it's reallyworth it and it kind of makes a
microcosm of a family in betweenevery team.
And then we have outreach wherewe get to know other teams and
just really celebrate the spiritof FIRST.
Speaker 1 (12:57):
Okay, well, I know in your bio you talk about how
disability is not a bad word, soexplain to the listeners why
you feel that way.
Speaker 2 (13:08):
So everybody experiences disability in some
way.
With 24 to 29% of the Americanpopulation identifying as
disabled, that number growsevery day, and so disability
culture and community is themost diverse minority group, and
anyone can enter our cultureand community at any moment,
(13:29):
whether it's through accident orinjury or medical condition.
Some, you know all of us willacquire a disability, more than
likely, at some point of ourlife or will be deeply impacted
by someone we love or work with.
And so so often disability hashas been a bad word.
(13:50):
Society has turned it intosomething that we lack,
something that we are not a partof, and so our community now is
saying that it's not a bad word.
It's something we allexperience in some way or
another, and we all have needs,and there's nothing special
about our needs, right?
Speaker 1 (14:24):
We all have the need for belonging, we all have the
need for community, we all havethe need for food and restrooms
and safe places, and so it'sreally just flipping the script
of what's positive and inclusionis important.
And the second part is why doyou feel you know people should
go above and beyond the ADA code?
Speaker 2 (14:41):
That's great.
So accessibility and inclusionare huge, because without either
or both of them, like I saidearlier, you don't have a sense
of community, you don't have asense of belonging earlier, you
don't have a sense of community,you don't have a sense of
belonging.
So often in my work with Aboveand Beyond With you, my
nonprofit, so often people arefocused on getting mobility
disabled people in the door,whether it's a ramp, whether
(15:04):
it's a power button, those arekind of the big ones, but then a
lot of times they do thosethings and then I'm in their
spaces and I say, okay, so nowwhat?
And it kind of puts them backon their heels because they go.
We haven't thought about that.
So can we use the restroomthere?
Can we grab a cup of coffee?
(15:25):
Can we go in the staff loungearea and make a lunch?
Can we be an employee in yourspace?
So there's a lot of next stepsin what we are thinking, and so
therefore, above and beyond theADA code, the spirit of ADA when
(15:45):
it came into being was part ofcommunity employment, all of
those things the spirit of theADA was.
Here's some general ideas.
Here's this thing calleduniversal design.
Here's how we can help peoplewith different looking needs,
(16:08):
different time needs, differentphysical needs, to be not just a
contributing part of society,not just people that can be
gainfully employed, but, like,truly a part of all parts of
community.
And so, with Above and Beyond,with you, we work hard at trying
to get that message across,that we want commitment to the
(16:30):
ADA, we want commitment tomaking things accessible and
inclusive for all people, andnot just a checklist so you can
feel good about yourself or notgood about yourself, but that
we're working together inpartnership to make sure that we
are doing the best thingspossible so everybody can be a
part of life and the things thatare going on in these spaces
(16:51):
and places.
Speaker 1 (16:54):
Well.
Share a challenging story withlisteners from your life.
You know that helped you andencouraged you to grow and move
forward.
Speaker 2 (17:05):
There are so many, I would say the one I like to tell
the most is I was a trumpetplayer and early on in my sixth
grade year we had a phenomenaltrumpet teacher and a band
director here in our small townand I started experiencing where
(17:27):
my right elbow was starting tofuse, which meant my elbow, by
way of the arthritis, was superpainful and it didn't want to
bend anymore, and so naturally Iwas just used to accommodating
and adapting in my brain becauseI'd been doing it already for
five, six years, and so Istarted playing the trumpet
left-handed.
(17:47):
And he came to me one day and hesaid we don't do that here,
there is no such thing as aleft-handed trumpet player.
And I perceived to use mystubbornness to prove him wrong,
and so after a couple of yearshe actually ended up retiring
and by the time I was in eighthgrade I had an eighth grade band
director who invested a lot inme, not only in eighth grade but
(18:11):
throughout my high schoolcareer, and now she's a great
friend and definitely still amentor and an important part of
my tapestry of my life.
And I talk about that in my book, a lot about how it's not just
stories about me, but it's astory about all the people who
make up who I am and the lifethat I've been given.
And so she inspired me tobecome a band director, not
(18:33):
because of the music history orthe music theory or that I love
certain composers, but for thefact that she treated me as
someone that had value and thathad meaning, and that it didn't
matter if I was the firsttrumpet player, which I was, or
if I was the last trumpet player, because every person has that
(18:54):
musical ability, every personhas worth.
Person has that musical ability, every person has worth, and
she just really shaped who Ibecame today and who.
I hope that I've inspired myformer students and my current
robotics kids to push fartherand to push, push deeper and to
find more about yourself,because you are important and
your story is needed in thisworld and your voice is needed
(19:15):
and your skills and talents areneeded.
Speaker 1 (19:19):
Speaking of your book , go ahead and talk about that
book, you know.
Let listeners know what theycan expect when they read it,
why you decide to write it andwhere they can get it from.
Speaker 2 (19:29):
Yeah, the book is titled, Within my Spokes, a
Tapestry of Pain, growth andFreedom.
I wrote it or it was publishedin July of 2023, and you can get
it on Amazon or anywhere whereyou buy your books.
It comes in Kindle or ebook orpaperback and I'm hoping to
release the audiobook thissummer.
(19:51):
So in writing this book, sinceI was a kid, in all my different
medical medical settings, I'vealways had providers say Johnna,
you need to write a book likethe amount of life that you had
lived, even as a young child.
There's funny stories, there'spainful stories, there's there's
stories to to learn from.
And so when I was going throughthe Bush fellowship and my whole
(20:12):
life turned upside down becauseobviously I wasn't able to go
and do any of those trips, I hadto figure out how to use that
fellowship time, those funds, tomake a bigger mark.
And at that time I had seen Idon't want to say an
advertisement, but maybe awebinar about how now, instead
(20:33):
of using business cards, a lotof people are using a book tell
your story.
Because you don't have time togo and have 300 coffee or lunch
dates with people to tell yourstory, but you might have time
to write a book within sixmonths to a year and then a lot
of people get to know your storyand then they can reach out and
you can make those partnershipsand connections by way of story
(20:55):
.
And so I embraced that and wenton the self-publishing journey
and my fellowship was able topay for some of the writing,
training and classes andcoursework that I was able to do
in the process and I had agreat coach at the beginning of
my journey there and she gave methe permission to only write
(21:16):
the things that I felt like Ihad mental and emotional
capacity to write on any givenday.
So, being a type A, I didn'thave to write everything
chronological order.
I could jump around in my storyand write the good things on
the happy days and the hardthings on the hard days.
And I will say that in thewriting process it has been
(21:37):
therapeutic to get to anotherlevel of maturity in my
disability, another level ofacceptance in my disability and
another level of passion toright the wrongs that happened
to me and my family growing upbefore the ADA and early ADA
days, before the ADA and earlyADA days, and try to make it
(22:01):
better for the families andespecially the young people that
are facing the disabled life inthe areas that I'm currently
living.
Speaker 1 (22:08):
Well, tell us about any upcoming projects that
you're working on that listenersneed to be aware of.
Speaker 2 (22:16):
So I am continually working with Above and Beyond
With you and listeners can findus on Facebook and LinkedIn and
Instagram as well as at ourwebsite, which is Above and
Beyond With you, capital U, andthe title of the nonprofit came
out of, like I said before,above and Beyond Code.
But the With you is a nod to mymusical career because, as you
(22:40):
can know by my last namespelling, you can only imagine a
little five year old orkindergartner trying to say hey,
miss Udenberg.
So they kindly changed my nameto Miss U.
So it's above and beyond withyou as a capital U.
But it also stands for, moreimportantly, that our nonprofit
is a lot of people tied to theeducation world, whether they
(23:01):
are paraprofessionals oreducators or adaptive PE
teachers or occupationaltherapists in the school setting
.
We all come at the work that wedo as a nonprofit from that
educational lens and we want itto be a partnership with all the
people we work with, whetherit's individuals or small
businesses or state agencies orbeyond.
(23:23):
We want that connection to be alearning one for both sides and
being mutually beneficial, notjust a drop in the pan of a
one-time connection with theentities or agencies, connection
with the entities or agencies.
Speaker 1 (23:39):
Okay, Well, you answered my next question Throw
out your website Above andBeyond With you capital U.
So close us out with some finalthoughts.
Maybe, if that was somethingthat I forgot to touch on, that
you would like to touch on anyfinal thoughts you have for the
listeners and give out thatwebsite one more time.
Speaker 2 (23:59):
Yeah.
So the website iswwwaboveandbeyondwithyouorg.
There's a contact us format onthere.
There's more where you can seethe services we offer.
There's also a link there toget my book within my spokes.
Final thoughts I guess I wouldsay Embrace where you're at in
(24:21):
your disability journey, whetherit's you yourself are disabled,
someone you loved is, or maybeit's a neighbor, someone you
just kind of know of.
Embrace curious questions andtry not to make assumptions, and
when we know that we're makingassumptions or living out of a
bias, that we would take thatextra time to really examine
(24:42):
that and then also take times ofchange.
So many times people tell me oh, jonna, you're so inspirational
and I want to come back and say, well, thanks for that.
But that word seems verymisguided sometimes, and so my
next step is always like so whatare you going to?
What are you inspired to do?
What are you inspired to change?
What are you inspired tocontinue to do?
(25:04):
That is a good thing, that'smaking life better for others
and that we can all live incommunity together.
Speaker 1 (25:12):
All right.
Ladies and gentlemen, Above andBeyond, with you, capital U dot
O-R-G.
Please be sure to check outJenna's book, Check out
everything that she's up toFollow, rate review, share this
episode to as many people aspossible.
Jump on your favorite podcastapp.
Follow the show, Check it out,Share it.
If you have any guests orsuggestion topics.
(25:35):
The show has a new website.
Please visitwwwcurveball337.com.
Thank you for listening andsupporting the show.
Jenna, thank you for all thatyou do.
Thank you for joining me.
Speaker 2 (25:51):
Thank you so much, curtis, it's been great.
Speaker 1 (25:54):
For more information on the Living the Dream with
Curveball podcast, visitwwwcurveball337.com.
Until next time, keep livingthe dream.
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