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July 11, 2025 56 mins

In this episode of Project Good podcast, host Annmarie Hylton delves into the evolving landscape of disability inclusion with Jenna Udenberg, founder of Above and Beyond with You, a disability advocacy organization. They discuss the historical context of disability rights, the impact of the Americans with Disabilities Act, and the ongoing challenges and opportunities for creating truly accessible spaces. Jenna shares her personal journey, touching on her transition from a music educator to a disability advocate. The conversation highlights the importance of interdependence, the misconceptions about accessibility costs, and the inspiring success stories of local community efforts. Tools and strategies for making homes and public spaces more inclusive, the significance of universal design, and the role of technology in accessibility are also explored. For more information about Jenna Udenberg and her work, visit AboveandBeyondwithU.org.

 

00:00 Introduction to Project Good Podcast

00:33 History of Disability Rights

01:39 Interview with Jenna Udenberg

05:58 Jenna's Musical Journey

09:42 Founding Above and Beyond with You

14:15 Defining Disability Inclusion and Accessibility

20:02 Challenges and Future of Disability Advocacy

26:33 Understanding Spoon Theory and Energy Management

27:37 Challenges of Technology for Disabled Individuals

28:08 Valuing Every Life and Overcoming Ableism

35:01 Success Stories and Community Impact

37:05 Research and Innovation in Accessibility

39:28 Creating Inclusive Spaces and Asking Questions

46:58 Strategic Goals and Future Plans

49:29 The Importance of Disability Inclusion

53:37 Concluding Thoughts and Call to Action

Mark as Played
Transcript

Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Annmarie Hylton (00:00):
Hello and welcome to the Project Good podcast.

(00:02):
I'm your host, Annmarie Hylton.
Project Good is a social impact podcast,interviewing experts and advocates
about the pressing problems that weface globally and hearing how they
suggest we move forward in the future.
The Project Good Podcast is broughtto you by Project Good Work.
The goal of this podcast is to inspirepeople and organizations to develop a
mindset that can move others to positiveaction regarding the complex social

(00:23):
issues facing people and the planet.
This month we're looking at disabilityinclusion, and in this episode
we're looking at disability access.
Before our modern times,people with disabilities were
often kept out of public life.
There was very little access to education,employment, or transportation, let alone
accessible buildings and sidewalks.

(00:45):
After World War ii, many veteransreturned with disabilities and
public awareness began to shift.
This led to a growing advocacy forrehabilitation services, accessibility,
and the right to live independently.
Momentum around disability rights beganto build during the 1960s and 1970s,
and the Rehabilitation Act of 1973 was alandmark US law stating that any program

(01:10):
receiving federal fundings must beaccessible to people with disabilities.
In the 1990s, the Americanswith Disabilities Act or
a DA was a game changer.
A DA made it illegal to discriminateagainst people with disabilities
and employment, public services,transportation, and public automations.
It also required ramps and elevatorsand buildings, cut curbs on

(01:33):
sidewalks, accessibility restrooms,and parking and captioning, and
screen reading for digital content.
Today I have the pleasure of interviewingJenna Udenberg, who is the founder
of Above and Beyond with you, adisability advocacy organization.
Jenna, the founder, grew up onthe beautiful north shore of Lake

(01:54):
Superior and is a dis disabilitiesadvocate and accessibility educator.
Jenna's newspaper column, localview from four feet, two inches can
be found in the Lake County press.
In 2017, she was selected to be part ofthe Belden Community Leadership Program
with 25 other community leaders fromher hometown of two Harbors, Minnesota.

(02:17):
In 2020, she became aBush Foundation Fellow.
Welcome, Jenna.
Hi.
Thanks for having me.
Hello, how are you?
I'm doing great.
How about you?
All right.
I know it took a little moment forus to get, uh, get started today,
so, um, we will jump right into it.
Let's see here.
So I was very interested when I was,uh, reading a little bit about you

(02:43):
and, um, and your, uh, just to sayyour book had some, uh, really great
reviews, I'm sure as an author or maybeyou haven't, some authors, you know,
um, they, uh, write and then they.
Us, uh, runaway.
They're like, I've createdmy art and, and, uh, runaway.
But you have, uh, excellent reviews,um, for your, uh, um, your book.

(03:03):
Um, so, I'm, I'm really excited to havethis discussion, um, and, and dive in
deep and hear, um, not only your lifestory, but um, about all the wonderful
things that your organization is doing.
And so, for.
Our audience.
And something that I do for everyinterview is that I try to get to know
the person about how they developedand became the human being that

(03:27):
they are and understand their heart.
And so, uh, before we dive into theinterview questions, I wanted to know what
has been the most surprising thing thatyou've learned about yourself as an adult?

Jenna Udenberg (03:39):
That was a great question.
I would say the most surprisingthing I've learned as an adult.
Is how interdependent we are.
Growing up on the stoicnorth Shore of Minnesota.
Lots of Scandinavian backgrounds.
Uh, you know, the, the American way,the American pride, all those kinds
of things, uh, makes it seem likewe have to do it alone and that we.

(04:05):
Have to be the experts of everythingand that it's, and our society
many times tells us like, oh, it'skind of taboo to ask for help.
And I'm glad to see that that is shiftingand changing, but the more that I live
my life in disability culture, in nondisability culture, and just appreciate
the tapestries of all the lives that cometogether, that interdependence that we

(04:28):
all have and how we all impact each other.
Wow,

Annmarie Hylton (04:32):
that is, uh, that's an amazing thing to learn because,
you know, I think it depends, uh,on not only, uh, of course life
experiences, but each person's individualperspective of how they see the world.
Because sometimes some people, asthey get older can be like, they
want to be more and more left alone.

Jenna Udenberg (04:52):
There are some of those moments, I ain't gonna lie, but.

Annmarie Hylton (04:58):
Yes.
Yeah.
I agree.
Yeah.
Sometimes you're like, what,what, uh, what is this?
Where did I, you know, did, how didI end up on this crazy planet place?

Jenna Udenberg (05:07):
Right.
I literally just wheeled in the door fromhaving three hours with seven, uh, six
middle school boys doing Lego robotics.
So, yeah, so having a, a, a female tofemale conversation, this is just like.
Bees knees bringing me back to grounding.
So thank you for that.

Annmarie Hylton (05:30):
That's good.
Yeah.
Especially, yeah, I know, uh,especially the, you know, when they
get to that preteen, teenage, uh,ages, really, um, it's a challenge.

Jenna Udenberg (05:39):
It's, it's all fun and I love the middle level.
Mm-hmm.
But yeah, it's just like, wow.
I didn't know that people could talk thatconsistently for that long at that level.
All right.
Back to my secluded introverted apartmentwith no animals, no other humans except
for us doing our thing right now.
I love it.
Yes.

Annmarie Hylton (05:58):
And so, one of the other things that I thought was, um, interesting
about you, you know, I'm, I'm gonna jumpinto, you know, your organization, but
you also, you have a musical background.
As, as well, you were a, a musiceducator for, uh, um, quite a while.
And so I guess how did you take,I guess, a leap from music?

(06:19):
Um, you know, I this is my assumption,you know, I never became a professional,
uh, musician, but I took music,uh, growing up as a, as a child.
But, you know, um, uh, to take theleap of, um, becoming an educator
in music, usually you have like, um.
Some underlying drive, I guess.
Uh, what led you in that direction?

Jenna Udenberg (06:41):
Um, so it's kind of funny 'cause my parents are not musical.
My, my grandma, uh, my materialgrandmother, uh, was musical
and played the mandolin.
And then my two sisters,um, they were much older.
Um, they played the cornet andthe flute to my older brother
had nothing to do with music.
He was always the hunter fisher gatherer.

(07:01):
Snowmobiler, you know, thetrue outdoorsman, Minnesotan.
And so I knew the flute was like toogirly for me 'cause I was a tomboy.
So the cort was kind of mything and that's like a cousin
to the trumpet and all that.
And so I thought that was pretty cool.
And I had an amazingeighth grade band teacher.
She was only my teacher.
You know, legitly for a year, but madean impact on my whole musical career.

(07:25):
And because she treated me like a,a full fledged human being, she saw
all of me, not just a trumpet player,not just this disabled girl in a
chair that, brought about all theseaccessibility barriers for her program.
Like I had never felt once, likeI was, um, a problem and quite the
opposite through my years of education.

(07:46):
So she just really inspired meto, to do this thing that I loved.
And playing trumpet was one of the areaswhere I could be like all the other kids,
and I found leadership skills there.
I found success.
I found the ability to, I. Get rid of thebarriers that people maybe would see on
the outset of seeing my manual wheelchair.

(08:08):
And then it'd be like, oh, that's Jenna,the lead trumpet player from two Harbors.
Like, yeah, that's cool.
Let's go play this thing,or let's go do this thing.
And that was kind of the source to getthrough a lot of hard times, a lot of
mental health issues at different times.
It made me want to do.
More.
And even when I got into college andwas pursuing both of my bachelor's
degrees for instrumental and choralmusic education, it was that love and

(08:33):
it was that drive that kept me going.
'cause I still faced, you know,opposition and discrimination even
at the collegiate level and beyond.
And so, you know, knowing that thatwas my calling in life at least
for a while, for 19 years, like.
Was really important and making surethat kids of all abilities and all
backgrounds had no barriers to getinto music if that was something

(08:57):
that they loved and wanted to do.

Annmarie Hylton (09:01):
Wow.
You know, as they say, musicis the universal language.
Um, but I never even thoughtof it in in a deeper way that
it it even act as an equalizer.
Um, because, you know, uh, when you're,you know, either you're good in music
or you're not good at music as they say.
Right?
And so, um, so, you know, um, and.

(09:23):
And I, you know, I never, I never thoughtof it that way, but um, that definitely
opens a whole other world, um mm-hmm.
And a different perspective, um,that I have on music and even,
and now even, uh, a different typeof, uh, respect and love for it.
Um, yeah.
Wow.
And so, you know, so then you madethis, uh, transition into creating

(09:47):
an advocacy organization, I guess.
What made you do that?
I.

Jenna Udenberg (09:52):
When life gives you lemons, I try to make lemonade.
So about year three of pandemicteaching from home, my school
district came back and said thatthey were no longer interested in
accommodating my work from home order.
Um, this was the first time thatI had my invisible disability
be my prominent disability.
So.
Being that I was immunocompromisedbecause of being a diabetic, because

(10:16):
of having juvenile rheumatoidarthritis and the different medications
that I'm on for both of these.
So yeah, my medical team waslike, you have to stay home.
You can't be having kids singing andblowing and playing and spitting and
all the things that you do in themusic realm, especially with choir
and band and you know, general music.

(10:37):
Yep, that just can't be your thing.
Right now until the world figureslife out, you know, it's not maybe a
forever done, but at that time, 'causewe didn't know any different, it really
was like, this is a forever done.
And so I kind of had an identity crisisfor a while because, you know, I mean, I.
Little Kindergarters can't say Udenberg,you know, US adults can't really say it.

(10:59):
Sometimes I can't even say it.
So they changed my name to be a miss You.
And so that's where the, with you ofAbove and Beyond with you came from,
um, in the name of, uh, my nonprofit.
And so an education is ahuge part of our nonprofit.
So the width literally meansit's not just like a one time.

(11:21):
A consulting thing or a one time trainingthing, like I really value education.
I really value partnership.
I really value like seeing this thingthrough, like it's all a journey.
Like I don't have this all figuredout, and I've been in a wheelchair
for 37 of my 38 diagnosed years,you know, of my 45 years of life.

(11:42):
I don't have all the words, right?
I don't have all the.
Thought process is right, butI have a growth mindset and I
wanna learn and I wanna be betterand I wanna be more welcoming.
And so the hardest part is, you know,like the greatest unfunded mandate
of the American government has beenthe Americans with Disabilities Act.
I am very thankful that has passed.

(12:04):
I'm very thankful that I haveall the amazing opportunities
that I've had in life.
But the unfunded part is what has.
Inhibited so much of accessibilityand inclusion from moving forward.
So my heart in above and beyondwith you is that someday I
wanna get to the point I.
We as a nonprofit can come alongsideother businesses that can't get grants

(12:26):
because they're not a 5 0 1 C3 thatcan't do all these other funding sources.
So by working together, we canhelp these small, rural businesses,
these larger industries, theseart, art opportunity, places like
the whole gamut of life, right?
And try to fill those gaps.
And also be an educating.

(12:49):
Force and opportunity so peoplecan break down those barriers.
Like, you know, there's so much like, oh,making things accessible is expensive.
Well it can be if you don'tdo it from the beginning.
It can be if you're not working with thedisability community to truly know what

(13:11):
works for them like, and that's the otherpart of above and me with you is like.
We're not a checklist, sodon't treat us like one.
And then, you know, like if you'reworking with community and with
culture, you're making things throughuniversal design to make things more.
Truly accessible.
And if you promote it with picturesand videos and ways that people can

(13:34):
understand that information, then wecan decide if something is accessible
for us and we'll meet our needs.
Or if there's other things that we needto bring to make that a safe and, you
know, um, successful environment for us.
Those were all of like my, like,here's the issues, here's the barriers.
How do we get to that next step?
And so above and yet with you hasbeen in existence for three years now.

(13:56):
And so it's exciting or we'reinto our third year, I should say.
But you know, we're,we're growing every month.
We're, we're moving andshaken, we're doing things.
And the future looks super amazing.
Um, but.
So there's, there's alot more growth to go.

Annmarie Hylton (14:15):
Yes.
And I guess, um, for people tounderstand that, uh, don't necessarily
have, you know, uh, a good perspectiveon, um, what it looks like for like
what disability inclusion, uh, reallymeans in an organization as well as,
you know, um, defining accessibility.
You know, I'm out here, Iguess in, in California.

(14:36):
So, you know, I, I guess I'm, I'm,I'm, I'm fairly familiar, but I think
it's important for people who are notdealing with this on their daily lives
to really understand what that means.
So how would you, um, I guess definefirst disability inclusion, and then,
then define what does accessibilitymean beyond like, uh, physical

(14:58):
access beyond having like ramps?

Jenna Udenberg (15:01):
Yeah.
One of the great examples I have,um, working with a local entity
you know, they're like, oh, butwe have a ramp in this space now.
Okay.
That's awesome.
Oh.
Like a year ago, we gotpower buttons on our space.
So now you can take the ramp fromthe handicap parking, and then
you can hit the power buttons.
And I'm like, okay, awesome.

(15:23):
And then they're like so we're done.
We're good.
Right?
We get your stamp of approval, and I'msitting in a board meeting and a boardroom
where I literally have to plug the doorbecause the table is so large in the space
that my only option is to block the door.
And to not be able to touch the table.

(15:44):
And so in that space and inthat moment, I said, so great.
You got me in the door.
And now what?
Now what can I do?
Can I truly be a fully functioningboard member in the space?
You all can go traverse down thehall and go into the little lounge
area and get a cup of coffee.

(16:04):
Can I. You all traverse down the otherpart of the hallway to go to the bathroom.
Can I, you can traverse down thehall and take the four stairs down
to the other place and go and workwith another person at this facility.
Can I, and so it just reallyopened up their mind of like, wow,

(16:27):
it is not just getting disabledpeople in the door, but it's.
Can they also do all the samefunctionality, be successful and
safe as their non-disabled peers?
And what message are we giving to peoplein those communities if they can't?

(16:47):
And so I like sharing that story becauseI also don't always think about that.
I grew up in a very non-disabled.
Community, and so thentherefore I have that mentality.
And so I've been working very hard throughmy different leadership and fellowship
opportunities in the last, you know, threeto five years to embrace myself within

(17:11):
my own culture and community as well.
And so trying to make sure that, youknow, people don't just think about.
Physical or mobility disabilities,and yet above and beyond with you
is very clear that is primarily ourwheelhouse and we wanna be a conduit

(17:33):
to all other aspects of disability.
But we also know that we don't speakfor those other aspects of disability,
culture, and community that we ourselvesdon't have lived experience for.
So we wanna make sure that we have.
Those networks in place.
So when different organizations orentities come to us and say, Hey, we want

(17:55):
consulting on this mobility disability,or this part of disability inclusion,
and we have some workers that arelow vision, we have some co, clients
that have some neurological needs.
Then the whole point is that all ofdisability, community and culture
is embraced and all of them have astakeholder position at the table.

Annmarie Hylton (18:18):
Now, I guess, what are the, I, I'm sure when you, um, you know,
get new clients that come to you andthey, they want help, what is I guess
the, the biggest barrier you usually face?

Jenna Udenberg (18:32):
I think currently it has been having all the questions to ask on
the front side, because sometimes we.
Come as human nature and we see the oneproblem, but maybe the one problem that
we're thinking of is actually just asymptom of actually the root problem.

(18:54):
So for us it's developing those likenot necessarily pre-screening, but
you know what I mean, like havingthat pre-conversation of like what
trainings are you currently doing?
What policies and proceduresdo you currently have in place?
What populations areyou currently serving?
Are any of those populations youremployees, have you thought about that?

(19:16):
Some of your.
Your employees are probably disabledwhen you know, 24 to 29% of the American
population identify as disabled.
And even though so much of our societythinks disability is a bad word and
there's a negative stigma, we know thatthere's way more disabled people in our
communities that are just not choosingto self-identify in those statistics.

(19:40):
Yeah, it's, it's getting tothat very beginning of things.
And then, like I said earlier, withthe width of above and beyond with you
is knowing that it's a longer journey.
So some people just think it's aquick checklist and we're just gonna
get this stamp of approval, and it'slike there's more to it than that.
Right?
So building those relationships.

Annmarie Hylton (20:02):
Now, you know, when you say the statistics and I was, uh, reading
it as I prepared for the interview andI was thinking, you know, it's, uh, they
were saying like 20, 24%, which is almostlike a quarter of the population, which
is huge actually when we think about it.
Um, and I think, you know, um.
I don't have a crystal ball anddon't know, you know, where the,

(20:24):
the, this crazy place is going.
But, um, uh, you know, what Isee is that you know, this, that
the statistics may be increasing.
And why I say that is that there's somany, um, different, um, you know, um.
They might not be, I guess, classifiedcurrently as disabilities, but there's

(20:45):
so many different things that people arecoming up with these days from a physical
aspect aspect and a neurological aspect.
Mm-hmm.
Um, that I feel like the prepercentage may be increasing.
I don't know.
Uh, have you been seeing that yourself?

Jenna Udenberg (21:01):
Oh, absolutely.
I mean, as the medical world and asscience improves, you know, as life
expectancy continues to grow, as ourlargest generation of the baby boomers
come through, and as they're startingto retire, and, you know, disability
is just an, a natural part of life.
Like, it's, it's not good.
It's not bad, it just is.

(21:22):
Right.
And we're all impacted by it.
So whether we.
Don't think about curb cuts, whether wedon't think about ramps or elevators or
lifts at some point in our life, if it'snot us that needs those things, we will
be impacted by a loved one or a, a fellowcoworker or an employee needing that.

(21:43):
And at some point we all have needs.
And in my, some of myspiels, you know, it's like.
Words matter.
And, um, saying things are likespecial needs for me lately,
that just drives me crazy.
'cause like, okay, well howmany people wear glasses?
Well, at one point that was considered,you know, an accommodation that you are

(22:05):
having glasses or contacts, you know,um, and like other inventions, right?
Like, so did you use yourelectric toothbrush this morning?
If you did, that was actually stems backto an accommodation for disabled folks.
But then everybody islike, Hey, this is cool.
This would help all people.

(22:26):
So by doing some of the, the very workof making things more accessible and
more inclusive, you're helping allpeople, whether they can see currently
that this is a need that they have.

Annmarie Hylton (22:38):
Yes.
And it's just, you know, uh, well,I think it's, uh, critical if, you
know, if we, we all hope, we all hope.
I, I say, I know everybody doesn't liketo get older, but we all hope that we do.
Right?
So I guess we, we don't like the thingsthat come with it, the gray hair, the,
the wrinkles and, um, uh, and the,the, the memory loss and all of that,

(23:00):
uh, you know, unfun stuff, right?
Um, but we all do, uh, hopethat we, you know, progress
through life decade by decade.
Um, yeah.
And so,

Jenna Udenberg (23:09):
oh, go ahead.
Mm-hmm.
I was just saying, and some of thatthough is our perspective, right?
Sometimes those gray hairs and thosewrinkles are such beautiful things
'cause they represent an amazing life.
So I think it's that, that flipping ofthe script of what do we see as beautiful?
What do we see as valuable?
What do we see as.

(23:30):
What humanity is supposed to be, right?

Annmarie Hylton (23:33):
Yes.
And you know, that you, youbring up a point as, um, as.
You know, um, from, uh, you bringup a point of, I guess, uh, just
because of the times that we are in,of, uh, I believe that we're in the
time of like, um, I guess in a way,if I were going to come up with a
tagline, re reclaiming our humanity, I.

(23:55):
Um, you know, if that's, uh, if thatwas what I was going to to call it.
And what I mean by that is that,um, in the last, uh, all this given
average about 20 years, right?
That's, uh, about the time we gotinto this, like, uh, technological,
like, um, uh, what should I say?
Um, a leash, right?
I'll just call it a technological leash.

(24:17):
Right?
Good words.
Because if we, if we think aboutlike 20 years ago, you know, before
we had the cell phones, only afew people had cell phones, right?
But those were like maybe thedoctor or the, you know, the
celebrity or something like that.
Um, it wasn't sure ne necessarilyevery day, um, running around a
teenager and, and person, right?

(24:38):
Mm-hmm.
And so, um.
Our lives in the last 20 years.
It's hard to think.
It was just like about 20 yearsago before we had all this,
how much our lives change.
You know, we wouldn't even be evenbe doing this podcasts, right?
Yes.
Yeah.
So it is, it is just amazing whathas happened in the last 20 years.

(25:00):
And because of that all the.
The drive of the technology and,um, the change of like, how I
would say the speed of life, right?
Because we mm-hmm.
We used to, you know, it used to takeus time to do things, but now if it
takes times, people gets, they get mad.
Right?
Right, right.

(25:21):
And so, that has to be something,especially when we are looking then on
I don't know, but I don't think thattechnology is going to be slowing down
anytime soon because, you know, we haveall these discussions of AI and things
like that, and I'm not, you know, I, uh,well versed enough to know how crazy it's
going to get with ai, but I just feel thatwe're going to be like, whoosh, right?

(25:45):
Like, everything's gonna belike, oh, it took one minute.
That's like.
Ancient.
Right, right,
right.
And so in that, and why I'm bringingthis up is like when we are looking
at then also now an aging population.
The speeding technology, right?

(26:06):
Mm-hmm.
And, and we look at the, the probabilityof an increased population that's going
to have an increase in disabilitiesand needing disabilities access.
How do you think like, um, I guessthis is a question even, uh, you could
probably look personally, how do youdeal with the, like the onslaught of
this changing speed of life and dealwith it in a disability community?

Jenna Udenberg (26:31):
That's a loaded, loaded thought process.
But it's a good one.
I would say it's exhausting.
And in disability community wehave this saying about spoons.
And so you can, you can Google iteverybody's only given a certain amount of
spoons, which equates to energy in a day.
And it's just a great visual of.

(26:54):
My chronic fatigue and my, you know,disabling condition and just life.
Currently today I've got threespoons, so what is going to get my
energy and my time and all right,well, then I wake up the next day.
Well, now I've had eight spoons, soI might have to go back and do some
of the things I, I should have doneor could have done the day before.

(27:20):
And every single human being has that.
And yet when you're faced with, likeI said, you know, pain, brain fog, all
the things we've been talking about, iteats up more of those spoons compared
to our non-disabled counterparts.
Um, and I would say technology can helpin it, but even like you and I just.

(27:42):
Experience with our, our setupand those kinds of things.
It's great when it works, andif that's your way of overcoming
obstacles and barriers, awesome.
But what does that disabled person do whentechnology doesn't work, when the power
goes out, when the internet goes down,when the cell phone towers xyz, right?

(28:08):
It comes down to, like you saidearlier, it comes down to humanity.
What value, what price, what mentalscripts are we putting on the
value of every life that's hereand what determines whose life
is more important than the other?

(28:30):
And we're living in veryconcerning times, I would say.
Because we're now saying that Jenna uses amanual wheelchair, so therefore she's more
of a burden, quote unquote, on society.
So therefore we should justinstitutionalize her because

(28:52):
that's what we did decades ago.
But by doing that, you'rerobbing the world of, you
know, a master level educator.
You're robbing the worldof a disability activist.
You're robbing the world of a bush fellow.
You're robbing the worldof a community leader.

(29:13):
You're robbing the world of anonprofit founder and a nonprofit
president in the robotics world.
Like there is so, and yet in that, itfeels gross to saying that because I'm
just labeling all of my accomplishments.
So our accomplish moreaccomplishments, more important.
Than the human spirit.

(29:35):
And is it always, always about whatwe can give or is there value of
just being and giving life that way?
And so that is all concerning to me.
And I'm not anti-technology, obviously,since I run a robotics program.

(29:56):
But it's finding those ethics andthose core values and the way that we
interact with all of it to make surethat we're using it in ways that are
beneficial and making us have someof those heart and spirit checks of
like, is this okay or is this not okay?
And how do we have those conversations,not just in your my generation, but

(30:18):
down to the younger generations anda hand up to the, to our elders and
the people that have gone before us.

Annmarie Hylton (30:25):
Yes.
And you know, you just, um, in my mind youwere, you were answering the, the question
of, you know, how is accessibility aboutmore than just, you know, ramps and, um,
you know, buttons and things like that.
It's about, having the, I guess the, theaccess to the human experience, right.

(30:46):
Because essentially that'swhat, if we're awake and alive,
that's what we're all mm-hmm.
Uh, you know, going for.
And when you're looking at disabilities,it's something that you want.
It's, uh, everybody wants theequal the equal rights to it, the,
the, the right to experience that.
Um, right.
And so, um, you know, uh.

(31:08):
You telling that story, that that's whatit, what came up to came up into my mind.
Mm-hmm.
And, you know.
And I think, you know, this is animportant discussion and I think
it's pivotal right now because asyou mentioned, we are on the, the
cusp of the baby boomers, you know?
Mm-hmm.
Um, coming into that aging out or the, youknow, the older decades of where they're

(31:33):
going to be looking at, you know, um, Iguess you could start really contemplating
like how does my story end now?
Once you get to mm-hmm.
You know, your seventies andeighties, because we know you
don't live forever, right?
And so, it gets, uh,it's, I think that, um.
It's pivotal right now thatpeople look at how we have all

(31:58):
different types of inclusion.
The thing that people probablydidn't think about, and we know
they weren't thinking about itbecause you're just thinking you're
gonna be the same way forever.
But that's not how life works.
And so now we are all confronting,um, that issue of change, right?
Like you come mm-hmm.
Into life one way, but then life happensto you and throws you some crazy stuff.

(32:23):
Yeah.

Jenna Udenberg (32:26):
And some of my adopted grandmas, uh, when I moved back
to my hometown, they were so cute.
'cause they're like, oh, we'reentering our second childhood.
And so it's like in your car.
But you know, like we, we start a certainway and, and sometimes we end similarly
and there's nothing wrong with it.
Right.
And I would say the way that popped upwhen you're talking about, you know, as
we enter into our ending stages of lifeand none of us know when that's gonna be.

(32:52):
But I guess a question that hasbeen going around in my friend
group for the last several yearsis, you know, what is the legacy or
the impact that we wanna le leave?
Because it isn't about Jenna Udenberg,it isn't about, us, it's about are
we leaving a positive mark on theworld that we're leaving behind?
And that can be exhausting tothink about, but I think it's very.

(33:17):
It very valuable.
You know, I, I think of, youknow, coming back to town here and
was like, oh, wow, this bank haspower buttons now in the doors.
Oh, our post office has this.
Oh.
And I was like, here, I hate toadmit it, but I was here for like,
well over a decade and I, I finallymet this wonderful lady who had a,

(33:37):
a service animal and one of the.
Rare service animals in our smallrural area and used a power chair
around town and all the things.
And unfortunately she passedaway about a month or two after
her and I finally connected.
And it was because of hercontinually asking and proving
to these local businesses andgovernment entities like, Hey, I

(34:02):
can't get in your place of business.
To do the things I need to do.
And I was like, Jenna, whydidn't you think about that?
Like of course there usually hasto be a life story and some kind of
impact that happens for money andbureaucracy and policies and all
the things to change in order foruniversal design to be put into place

(34:25):
so everybody can access and be includedand thrive within their community.
And I would just like, like.
Like, you hope that people arejust gonna do it on their own.
Good.
But we don't know what we don't know.
Right.
So it's really important thatevery story is shared so we
can all become better humans.
Yes.
And speaking

Annmarie Hylton (34:45):
of stories, um, do you have a favorite, uh, I guess
success story where you feel thatyour work led to a, a, a tangible
improvement in either accessibilityor, um, even in changing a life?

Jenna Udenberg (35:01):
I would say my work with our local library has been the
greatest success story because of theiramazing leadership and because of their
seeking out ways of bettering themselves.
Um, so being a, a bland in communityleader, I had the opportunity to help

(35:21):
them write a grant, uh, with someother of my fellow Blandy family.
And, uh.
In that grant, we were able to notonly get accessible resources like
different books about disabilitybut more importantly we were able
to help them get like a lowered.
Circulation deskaccessible computer tables.

(35:45):
And most importantly, which before this,I really knew nothing about shame on
me, but now I know so I'm doing better.
And a electric adjustableadult changing table.
And so as we were in thisprocess, all learning together,
it was like, wait a minute.
We are the only public adult.

(36:06):
Electric changing table
in all of northern Minnesotathat we knew about at the time.
And even the bigger city of Duluth, to myknowledge at the time, didn't have any.
And so it was like, wait, how didlittle two harbors like do this thing?
And then I was just recently in ournewly renovated, uh, elementary school,

(36:28):
and sure enough, I went into one ofthe, gender neutral family bathrooms.
And sure enough, there's an electricadjustable adult changing table.
And I was like, yes.
Like we're finally seeing it and italready grew and it grew not from me
having to go and do the dog and pony showof like, Hey, this is the best practice.

(36:50):
This is what you need to do.
Like somehow someone somewhere said.
Hey, this is what we need to have.
And so just seeing that a coupleweeks ago and like going, ha,
I had nothing to do with that.
So that's really cool.

Annmarie Hylton (37:04):
Wow.
You know, uh, one of the things I wasthinking, and you, you brought it up
uh, indirectly, is I would think thatyou have to do a lot of research all
the time because, you know, I, I didn'teven know one of those things existed.
And so I guess, how do you findout, I guess, these different things
exist or are there, or do you workto sometimes create, um, you know,

(37:26):
uh, tools and, and, and needs or Iguess how do you find out about, uh,
these, uh, different types of, I guessyou would say tools or services, or.
Um, the abilities to makeadaptations to things.
In my mind I keep thinkinglike occupational therapists,
um, kind of, uh mm-hmm.

(37:47):
Like, um, I guess changes to thingslike, um, uh, how do you find
out that these things even exist?

Jenna Udenberg (37:54):
Yeah, I would say, you know, definitely research.
Um, that's what I loveabout my nonprofit board.
You know, we have people that were.
Camp directors for, uh, accessible camps.
Um, we have, retired adaptive PE teachers.
We have one of theschool OTs on our board.
So when you bring together a powerhouseof people, and we have a former special ed

(38:19):
teacher as well as some paraprofessionalsand school administrators.
Um, so when you bring together avariety of skill sets and a variety
of lived experiences together.
It's an awesome think tank to belike, oh yeah, I saw this bench.
So, so, at such and such a place.
For me, when I'm out in community,I do lots of pictures of toilets and

(38:39):
I know that sounds really weird andI don't wanna be called the toilet
queen, but so many people just takeit for granted that you can meet
your basic need of using a restroom.
But for those in disabilitycommunity, that isn't true.
And so by taking pictures, likeI always tell my friends like.
A true friend sends Jenna toilet pictures.

(39:00):
'cause then I know where I can go.
I know what things I need toplan ahead for all those things.
But sorry, I got defrayed.
So it, uh, yeah, so, you know, justbringing things full circle of how
can you live life where you're atand how can you, make sure that

(39:22):
everyone is safe in all the placesthat they can be in and should be in.

Annmarie Hylton (39:28):
Now, I guess for the everyday person, how can someone, um,
that doesn't, uh, doesn't necessarilyhave a disability I guess contribute
to your mission or, or making morespaces feel accessible and inclusive?
For example, even like, uh, youknow, um, people at their homes.

(39:48):
You know, me, I, I personally, um.
Many years ago when I wasyounger I had actually, um, a
roommate that was, uh, deaf.
So, um, I learned a lot, but I had,uh, I had previously, um, already
before meeting her, years beforehad, uh, taken sign language.
So for me, I, I kind of, um.

(40:10):
You know, I guess wasadjusted to some things.
But then learned, um, uh, a lot of,uh, interesting things as thing as, uh,
time went on with us living together.
Like, I didn't expect, like, uh, you know,when, uh, when we lived together, one of
the things I was thinking, well, you know,um, overall it was going to be peaceful.

(40:30):
I did not know, you know,that she was going to be, uh.
You know, playing loudmusic and wild parties.
I didn't see that.

Jenna Udenberg (40:40):
I love it

Annmarie Hylton (40:41):
because I was like, I was like, wait but you know, the thing I
learned, I was like, but aren't you deaf?
'cause I came home one day and likethe music, I was like the, in the,
I was out in the like parking lot.
We lived in an apartment andI was like, oh my gosh, like
this, whoever's having this.
Parties, like, you know, like mycar's even vibrating before I walk
down the sidewalk to our front door.
Right?
And lo and behold, it was my place, right?

(41:04):
And I was like, I was like, ohmy gosh, did somebody break in?
You know, where evicted, or, Iwas like, there's a party of my h
uh, my own house that I don't evenknow about this happening, right?
And Nice.
What I learned, what I learned about itis the reason that she would listen it
to it sound so, uh, uh, loud, is thatin order to listen to music when you're

(41:28):
deaf, it was about feeling the vibrations.
Yeah.
And I was like, ah.
Yep.
And now I knew I had to get eitherlike air, you know, be like, uh,
working at, you know, uh, the peoplethat, uh, work on the airlines.
I have to get homes likethat when I come home.
Mm-hmm.
Yep.
North canceling headphones.
Yep.
Yes.
Yeah.
So that I could like, you know,so that I could function in it.

(41:51):
But it's things like that.
But, you know, of course I havea, probably a different, uh,
experience than most people.
Um, so how, I guess.
Uh, do other people every day, howcan they be, um, helpful or even,
you know, um, prepare their, theirhomes or space to I guess, uh, to,
uh, I guess to be just welcoming,

Jenna Udenberg (42:14):
I would say, you know, asking curious questions is always a
good place to start and making sure thatyou're not making assumptions, which is.
All of what humanity does, right?
Oh, I know.
Confronting our unconscious biasesas much as we can, and asking the
disabled person, you know, whatare your needs in your space?

(42:35):
Would you feel comfortable here?
Do you feel safe?
You know, like, what can I do?
And I guess, you know, trulybeing open and authentic and
knowing that it's nothing that.
You know, is bad or whatever, like, youknow, I have a great group of friends
and my one friend's house is accessible.
Obviously my apartment is, butmy one other friend's isn't.

(42:57):
But then we just figure it out, right?
Like, so we can't equally go toeverybody's house, but, oh, well, I
can't have y'all come to my house onthis month, but I'm gonna bring the
treats to so-and-so's place instead.
You know, and like Idon't even think about it.
And then, you know, my friend will belike, Hey, can we do like a virtual tour
of my house so I can, so you can seelike, you know, where, where I live,

(43:20):
what I do, you know, and of courseher and her young family, you know,
have some plans of building on someland, maybe someday, depending on what
happens in our interesting climate of.
But just knowing that that's her heart.
That she has a heart that, youknow, wants me to be in her home
and, and wants it to be accessible.
It just knowing that that's the heartcondition of my friend that makes a

(43:44):
difference and we can openly talk aboutit instead of it being like this taboo
secret, just gross gameplay that canhappen, um, very easily in humanity.
Um.
Also just being, you know,understanding of that.
Like in my, uh, local view from fourfoot two, once I wrote about hey, like

(44:05):
these two friends have these accessiblehomes that I can come in and one has a
bathroom that I can use and one doesn't.
And like I just wanna be able tocome and like, hop on your couch and
get outta my chair and just be likeeveryone else that comes to your house.
And I got more comments about thatfrom random community members.

(44:26):
Because they had never thought about that.
And I'm like, right.
So another example of just, beingvulnerable enough to share your authentic
story to make an impact on others to go.
Oh, and kind of circling back toyour previous question that also
fits this question is there'sthis thing called abilities expos.
And so they happen all over thecountry and they're completely free.

(44:49):
There's many that happen inCalifornia out in your world.
So finding them and going like, you'llsee the technology and the innovations
that you've never seen before.
Plus see all the like less high tech,less high cost things in life of
portable ramps and like other things.
So I think as we.

(45:11):
Explore these opportunities and aswe have more of a larger population
and a lot of these things just becomesecond nature, I would love to see
places like our public librariesor some other institution that has.
Portable telescoping rampsthat people can just check out.
'cause you know, grandma or grandpa'scome in for the weekend and they're in a
chair or they're using a walker and stairsare hard, but we have like two stairs to

(45:35):
go up and, you know, or Hey, my friendis coming over and we're gonna cook and
instead of having them bring all of theiradaptive cooking stuff, we can go in.
Borrow the kit from the librarythat has all the adaptive knives
and spoons and bowls and you know,like I think we as a society can
have very creative ways of makingthings more inclusive and accessible.

(45:57):
We just have to think outside the box.
And disability culture andcommunity is very good at that.
We just have to be willing to ask.

Annmarie Hylton (46:06):
Wow, you just gave me an, uh, an idea that, um, well,
I don't know, I guess, uh, somethingthat needs to be like, uh, spread
across or even maybe something you cando, um, of having these, I, I guess,
adaptable toolkits that are mm-hmm.
Ready, ready for, uh, ready for use.
Um, because I think, as I said, youknow, I think, uh, we have a, a growing

(46:28):
aging population, so this stuff isgoing to become essentially mainstream.
Huh?
Yep.
Um, and now I just have twoother questions for you.
My other one is, uh, a little bitback over to your organization.
So what would you say your organization's,uh, uh, currently, and I know these days,
um, people only think, uh, we only thinkin like, maybe, uh, three year increments

(46:51):
because the, the place is, uh, on fire.
Um, so.
So, um, what would you sayyour organization's, uh,
short and long-term goals are?

Jenna Udenberg (47:05):
Yeah, uh, we just went through strategic planning, so we're
kind of in the, the thick of things.
But coming out of this we're also very.
Committed to continuing this work nomatter what barriers and obstacles
are gonna continue to be thrown at us.
And that was very amazing andreassuring 'cause it all came out

(47:31):
of my non-disabled board members.
And so that was.
Amazing to hear for me and our president,who is also uh, a wheelchair user because
it was like, okay, we know that our,what our answer is, but we really hope
that we have other people in the fight.
Um, and so I think, you know, justthe next right choice, the next

(47:55):
rate project at the next rate time.
I also think continuing to have theseauthentic conversations that are teaching
us and teaching others all the same time.
So I want to be able to continuethe amazing things that we're doing

(48:16):
with the, local government, localstate agencies continuing to make
those partnerships continuing to.
Keep being at the table because when I amin the Zoom, and if it's just my name in
the Zoom, when I or my president or otherboard members are in physical spaces,

(48:39):
the conversations continue to happen.
But I don't always know if we weren'tin those spaces, would disability
inclusion, accessibility, diversity.
All the things equity would,would those all still be talked
about if we weren't there?
So that's my concern inthe next 3, 6, 10 years.

(49:03):
But I can pretty much guarantee as longas I and others on my board and others
that are allies and supporters havebreath in their lungs and a heartbeat,
we're gonna be in those spaces andwe're gonna still be sharing our story.

Annmarie Hylton (49:17):
Sounds, uh oh, wonderful.
And it's definitelythe, the times for that.
Um, I guess, uh, my closing questionwas I guess of a similar vein.
Um, I was thinking about, uh, how canwe, I guess, um, I guess wake everyone
up, um, that, uh, you know, um.

(49:40):
That, uh, um, disability inclusionis, uh, is important for all of us
because we're not getting any younger.

Jenna Udenberg (49:50):
Yeah.
And I think, you know, people acquiretheir disabilities at any moment, right?
Like the disability communityand culture is the mi most
diverse minority in the world.
There is no special handshake.
There is no special.
You know, VIP pass, you have to go by.

(50:11):
There is no special id.
You have to have.
It literally can happen to anyone at anymoment through an accident, through a
disease, through, all of the differentways that you can acquire your disability.
Um.
The reality is, is we all have to havegrace for ourselves and others because
the disability journey is not easy.

(50:32):
I mean, I'm sitting here 38 yearsin and there's still bad days.
There's still things that make mewanna shake my fist and be like, why?
But then on the flip side, whenpeople go, well, wouldn't you like
wanna go back to being seven yearsold and like, not fall on the ice?
And if that was truly what triggered yourdisease, or wouldn't you wanna go back?
I'd be like, no, I don'twant my disability.

(50:54):
And my answer is always no.
And when I say that I'm a prouddisabled woman, I don't mean pride
in a bad way, but I mean it in a.I'm tired of taking people's junk.
I'm tired of being somebody that'streated like, well, you belong under
the table, and you should be verygrateful for any scraps you get that
we happen to drop from the non-disabledtable, and while some people don't

(51:18):
intentionally mean some of those.
Things, the ableism that comes acrosscan be hurtful and can be traumatic.
And I think now that we have some of thislanguage, thanks to so many people that
have gone before us, I think we're ableto have some more of these conversations.
And when I share some of thosestories, you know, of my past in my

(51:40):
book, um, within my spokes of, formerteachers or former professors or other
things, like I don't sit and harborany bitterness or have any of those.
Horrible, traumatic, negative thingsfor them because I know that they were
just doing what they knew at the time.
But I'm hoping now that we're on theother side of things and we're decades

(52:03):
past that, I hope that those samescripts and those same choices would
not be what they would currently,put on their current students.
So we're all growing, we're all changing,and I hope that we have enough courage.
Enough vulnerability to workhard together to be better.

Annmarie Hylton (52:24):
Yeah, I think that's, that's perfect.
And for us to trying to change ourperspectives, um, that it isn't you
know, I guess in a way that I wouldput it, it isn't a disability and
it's just like, it just happens to be.
Mm-hmm.
And, and that we just go alongwith, um, go along with life.
But it doesn't mean, um,you know, things stop.

(52:45):
It's just, you know,it just happens to be.
And it could be, you know, and it andI was just thinking about all the, uh,
different people that I've known inmy life that, things just happen to
be like, you know, all of a sudden youhave a stroke and now you can't talk.
Anymore.
Mm-hmm.
Um, or, you know, um, I just, uh,just recently I just saw somebody

(53:07):
that, uh, is, uh, uh, an acquaintanceof mine and was, uh, you know, just
recently like, uh, diagnosed with,uh, uh, uh, ball's Palsy and um.
Just like, uh, all these differentthings and you know, and these things
are just happening at any age, forany time for people, you know, like
yesterday they were, you know, uh,you know, jumping on the trampoline

(53:30):
and then today, you know, they can'tmove one of their arms or something.
So yeah, it's, it's just happening.
But this is a great perspectivefor all of us to have that, it's
just let's think a bigger pictureof I guess just living life.
Like life.
Life can throw anythingat us, so let's be ready.

Jenna Udenberg (53:51):
Yeah.
And, and the other part thatI would say too is like.
This is a new perspective forme in the last five years or so.
But you know, a lot of timesit's not my medical diagnosis.
That's the disabling thing.
It's not my wheelchair.
That's the disabling thing.
It's the environment that othersare putting me in, whether it's a
physical or an attitudinal environment,that's what's actually disabling.

(54:15):
It has nothing to do with me.
That's an interesting wayof, of, of flipping it.
But I see that, 'cause even when I wasa teacher teaching in a tiered band
in choir room, it was like, I felt sogross and I felt so like incapable.
Like what if a kid gothurt up on the fourth tier?

(54:35):
I can't physically get to that kid.
I know what to do.
I know how to help them.
I know all the things 'cause I'mtrained and I'm highly educated.
But because you put me in this spacethat is unsafe and in this space that
is inaccessible for so many people,not just me, but since I'm the licensed

(54:56):
teacher in this space, you in thischoice have made me even more disabled.
And it's a, it's a horrible feeling.
So I think the more that we can look atour spaces and look at our attitudes,
and look at our policies, look atour hiring practices, look at all
the things you know, in business, inorganizational structures, and truly

(55:16):
look at it and go, is this inclusive?
Is this accessible?
Is this right?
And does this feel good or does it not?
And if it doesn't, then what are thesteps we need to do and who needs
to be at the table to help us makethis feel, look, and act better?

Annmarie Hylton (55:33):
Yes.
Perfect.
Thank you Jenna, foryour time and insight.
To learn more about Jenna Udenberg,go to Above and Beyond with U.org.
If you have a passion for an unservedcommunity, a social justice problem,
or want to change minds contactproject, good work@projectgood.work.
To start your project of Changetoday, subscribe to our mailing

(55:55):
list at projectgood.work slashsubscribe to get our episodes and
blog articles sent to you each month.
To our listeners, thanks fortuning in to Project Good where
we're focused on what matters.
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