Diagnosed with juvenile idiopathic arthritis as a child, author and 2020 Bush Fellow Jenna Udenberg turned lifelong challenges into a mission: make accessibility the norm, not the exception. She shares how “Within My Spokes” captures resilience, why “committed over compliant” changes everything, and how her nonprofit Above & Beyond With U helps businesses and communities design with disabled people from the start. Expect practical truths on housing, travel, education, and what true inclusion really requires.
Sponsored by Real Life Prosthetics
Diagnosed with juvenile idiopathic arthritis as a child, author and 2020 Bush Fellow Jenna Udenberg turned lifelong challenges into a mission: make accessibility the norm, not the exception. She shares how “Within My Spokes” captures resilience, why “committed over compliant” changes everything, and how her nonprofit Above & Beyond With U helps businesses and communities design with disabled people from the start. Expect practical truths on housing, travel, education, and what true inclusion really requires.
Sponsored by Real Life Prosthetics
Guest Bio:
Jenna Udenberg is an accessibility advocate, author of Within My Spokes: A Tapestry of Pain, Growth and Freedom, founder of the nonprofit Above & Beyond With U, and a 2020 Bush Fellow. A wheelchair user and bugler for veteran funerals, she consults with communities and organizations to go “above and beyond code,” centering lived experience to create spaces where everyone belongs.
Main Topics:
- Juvenile rheumatoid → idiopathic arthritis: what changed and why it matters.
- Growing up disabled pre-ADA: school, IEP/504 gaps, and systemic ignorance.
- “Committed vs. compliant” accessibility; housing and new-build failures.
- Travel barriers (airlines breaking wheelchairs) and policy change needs.
- Bush Fellowship: investing in leadership, learning from disability history hubs.
- Adaptive movement, diabetes management, and aquatic training.
- Above & Beyond With U: funding, rural access, and promoting accessible events.
- The book Within My Spokes: writing trauma with care; audiobook in progress.
Resources mentioned:
- Above & Beyond With U (nonprofit): aboveandbeyondwithu.org (said verbally as “dot org”) — donations and book sales support the org.
- Book: Within My Spokes: A Tapestry of Pain, Growth and Freedom — by Jenna Udenberg.
- Bush Foundation & Bush Fellowship (MN/ND/SD & tribal nations).
- Disability history & docs: Ed Roberts; Judith Heumann; Crip Camp film; Section 504, IDEA, ADA.
- Healthcare/Clinics: Mayo Clinic (diagnosis terminology shift).
- Adaptive gear: Rio Mobility Firefly front-wheel e-assist; seat-elevate “see-me” power chairs.
- Funding/Donations: GiveMN / Minnesota Give Day (referenced as state giving platform).
- Community examples: DNR, state parks, Lions Club ramps.
- Other: Accessible parking dimensions (van spot + 11’ access aisle); accessible forms/fonts.
- Episode Sponsor & Supporter: Real Life Prosthetics
- Supporter: Full Circle Boards
- Supporter: Sincerely Sawyer Photography
Real Life Prosthetics
Cutting-Edge Solutions. Restoring Ability Since 2001.
Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.
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00:00 - 10 Years
02:10 - Meet Jenna Udenberg: Author, Bush Fellow, founder of Above & Beyond With U.
04:00 - What Is Juvenile Idiopathic Arthritis? Definition, renaming from JRA.
07:50 - Treatments & “Burnout” Myth: what helped, what didn’t, and seasons of disease.
09:44 - No Cure, but Agency: mindset, management, and laughter.
10:58 - Pre-ADA Schooling: access battles, band, mainstreaming, discrimination.
14:10 - Music, Taps & Dignity: bugling for veterans; power of ceremony.
17:47 - Bush Fellowship 101: who it serves and how it funds transformation.
20:37 - Flights & Broken Chairs: travel barriers; policy push.
22:58 - Immunocompromised & COVID: pivoting fellowship to virtual relationships.
25:23 - Adaptive Fitness & Diabetes: pools, home equipment, Firefly freedom.
28:08 - Housing & New Builds: why “universal design” must be standard.
30:29 - Committed vs. Compliant: design for people, not checklists.
33:02 - Playgrounds & Bias: who we forget when we “design for disability.”
34:58 - Break →Sponsor: Real Life Prosthetics.
36:07 - Paying the Disability Tax: insurance gaps; waivers; the cost of living.
41:04 - Resorts, Loopholes & Lost Revenue: why access is good business.
42:29 - Parking Lots & Code: van aisles and “we repaved what we had” problems.
43:55 - No ADA Police: lawsuits vs. partnership; ABWU’s phased approach.
48:29 - Why “With U”: the ‘U’ origin story and long-term education.
50:01 - How to Donate: website, PayPal, PO box, GiveMN.
54:55 - Within My Spokes: title meaning; trail community inclusion.
59:43 - Writing Through Trauma: pacing hard chapters; audiobook coming.
01:07:22 - Lightning Question: “Change one thing about the world?” Root vs. symptoms.
01:08:47 - Outro & Supporters
Wendy & Rich 0:00
Hey, everyone is Rich Bennett. Can you believe it? The show is turning 10 this year. I am so grateful for each and every one of you who've tuned in, shared a episode, or even joined the conversation over the years. You're the reason that this podcast has grown into what it is today. Together, we've shared laughs, tears, and moments that truly matter. So I want to thank you for being part of this journey. Let's make the next 10 years even better. Coming to you from the Freedom Federal Credit Union Studios Haafer County Living presents Conversations with Rich Bennett.
Nanana!
Rich Bennett 1:00
Nanana! Nanana! Nanana! What if life's greatest challenges could become the very spokes that keep us moving forward? On today's episode, I'm joined by an incredible force for good. Jenna Udenberg. Diagnos of juvenile arthritis as a child, Jenna's life was never meant to follow the easy road. But instead of letting obstacles define her, she used them as a fuel for purpose. She's now an author, a 2020 Bush Fellow, and the founder of Above and Beyond with you. And that would be the letter U. A nonprofit committed to break it down, accessibility barriers, and creating communities that truly include everyone. Her book within my spokes, "Dives deep into themes of resilience, healing, and the powerful relationships that help us rise" So whether you're navigating personal cIPACs, advocating for change, or simply searching for connection, Jenna's story will hit home. So get ready to be inspired as we talk about overcoming adversity, building inclusive spaces, and discovering strength you didn't know you had. This one is about purpose, Perseverance, and the power of showing up, not just for ourselves, but for others. How you doing, Jenna?
Jenna Udenberg 2:24
I'm doing great, Rich. Thank you so much for having me.
Rich Bennett 2:27
Oh, my pleasure. I want to... This has been bugging me. So I got to ask you this question, because you tell me how arthritis. There's so many
Jenna Udenberg 2:40
kinds.
Rich Bennett 2:41
But you're only... Of course, you're only here of arthritis and rheumatoid
Jenna Udenberg 2:45
Yeah.
Rich Bennett 2:46
arthritis. Explain to everybody what is juvenile arthritis.
Jenna Udenberg 2:50
Yeah, so when I was diagnosed, it actually was juvenile rheumatoid arthritis.
Rich Bennett 2:55
Oh,
Jenna Udenberg 2:55
for decades, I defied the medical book, right? So if doctor's open their book, it should be A plus B equals C for treatment. And my body would take that and it would take that B, and it's been owned as ZQRS, square root of R times whatever, right?
Rich Bennett 3:13
No
Jenna Udenberg 3:14
sense compared to their books. And so about in 2018 I went back down to Mayo Clinic, and they're like, actually now we call it juvenile idiopathic arthritis.
Rich Bennett 3:25
I
Jenna Udenberg 3:25
Because follow rheumatoid and I'm like, I could have told you that when I was eight years old. And
Rich Bennett 3:31
Wow.
Jenna Udenberg 3:32
then a lot of times, because idiopathic is a hard word, they do a short note to be juvenile arthritis. And another interesting fact is about a decade ago, they're like, man, I'm like, oh, you called me man. At
Rich Bennett 3:45
was...
Jenna Udenberg 3:45
that time I
He can take juvenile off your diagnosis if you would like. And I'm like, oh no, if this body ends up in an ambulance or on your emergency room table, You need to know I've been fighting this thing for decades.
Rich Bennett 3:59
right.
Jenna Udenberg 3:59
Not like, oh, you just got arthritis yesterday or last year or even 20 years ago compared to my 38. So yeah, I'm like, nope. M plus M 45 now. So having the word juvenile, I'm always going to be a kid at heart. So
Rich Bennett 4:12
go.
Jenna Udenberg 4:13
there we
Rich Bennett 4:13
I
Jenna Udenberg 4:13
love that.
Rich Bennett 4:14
I love that. Okay, so with juvenile arthritis, because myself, I have arthritis. I was the last physical getting at the Marine Court. They told me I had arthritis and my spine and my knees. So I'm okay. I wonder if I can get disability for that. I don't know. But
Jenna Udenberg 4:33
and
Rich Bennett 4:34
then later on, when I say later on, I'm talking maybe five years ago,
Jenna Udenberg 4:41
okay,
Rich Bennett 4:42
maybe somebody, my older brother convinced me to go to a chiropractor because I had bones bursts in my neck. And I don't like to go under the knife. Well, talking to the chiropractor at the time, they told me how, and I didn't know this because I always thought when you go into a chiropractor, they're just there to break you. I mean crack your to- to align you. But he explained it different types of chiropractors to me and how chiropractic care can help with one of the things was arthritis. And I think I go every six weeks now, but it's amazing how much it has helped. Now for juvenile arthritis is that some, I mean do you know chiropractic care can help with that, or is there medication? I mean, what's, what is, 'cause I know you, I don't think you can ever get rid of arthritis. I think you can basically, help get it, you know, get along with assistance or whatever.
Jenna Udenberg 5:44
right,
Rich Bennett 5:45
But with juvenile arthritis, is it the same or is it different?
Jenna Udenberg 5:48
Great question. First off, thank you for your service to our country. I
Rich Bennett 5:52
All
Jenna Udenberg 5:52
don't
Rich Bennett 5:52
mine.
Jenna Udenberg 5:52
want to, I don't want to forget to say that. It holds a place in my heart. I'm a bugler for veteran funerals.
Rich Bennett 5:58
No! Oh, no way.
Jenna Udenberg 6:00
Yeah, so thank you so much for your service means a lot. To answer your question, I would say. There's lots of treatments in lots of different ways. Like, it was interesting when I was young. They had, you know, actually my a chiropractor. So they're always like, "Hey,
Rich Bennett 6:18
Okay.
Jenna Udenberg 6:18
you can go see your cousin."
Rich Bennett 6:20
"That
Jenna Udenberg 6:20
And I was like, kind of scares me, 'cause I grew up in the medical model of disability, and
Rich Bennett 6:25
my,
Jenna Udenberg 6:25
I'm gonna trust
Rich Bennett 6:25
ew!"
Jenna Udenberg 6:26
Pictures, and we're gonna try all these medicines. And, you know, and it's fine, right? That's my journey. That's a part of how it became who I am. Now I'm a little bit more adventurous in what I try.
Rich Bennett 6:40
Okay.
Jenna Udenberg 6:41
But, and I'm also at this point. So yes, people can grow out of juvenile arthritis. They...
Rich Bennett 6:49
Oh, they can.
Jenna Udenberg 6:50
Yeah, the disease can quote unquote burnout. And so that was always the hope. Like, "Oh, Jenna's disease started so aggressively, it'll burn out by the time she's 11 or 12, and that never happened for me." I had another good friend of mine has the same diagnosis, different onset, different aspects of the disease, but still the same disability
Rich Bennett 7:13
right
Jenna Udenberg 7:14
diagnosis. But she was actually on a mango steam juice, and she's, because she was so concerned
Rich Bennett 7:20
with
Jenna Udenberg 7:20
it, mango steam is a fruit over in the continent of Asia, and it tax inflammation cycle. And so because her body responded so well to it, she actually was, whatever the word is, discharged from rheumatology. They're like, "Yes, we know that you still have GA, but like, your sedate is normal, and it's been normal for years now because you're on--
Rich Bennett 7:47
Wow."
Jenna Udenberg 7:47
And whatever. So she's like, "I was discharged, but I've been--I've--I serious my diagnosis." And she also was like 6 or 7. So it's like,
Rich Bennett 7:56
"Wow."
Jenna Udenberg 7:56
But then it came back with vengeance and whatever, right? Because the disease--
Rich Bennett 7:59
Right.
Jenna Udenberg 8:00
--the disease wants to do it, but just very interesting of what can help, what doesn't help, and what might help for this season of the disease, and then what
Rich Bennett 8:08
doesn't
Jenna Udenberg 8:09
help later. So
Rich Bennett 8:11
interesting.
Jenna Udenberg 8:11
Yeah.
Rich Bennett 8:12
Yeah. I mean, cuz I think once you have something, there's always --well, it's like cancer, and everything else, there's always a chance that it can come back.
Jenna Udenberg 8:21
Yeah.
Rich Bennett 8:21
As I said, I don't think there's actually a cure
Jenna Udenberg 8:24
No.
Rich Bennett 8:24
for any of it. If there is, well, they want to tell us anyways because--
Jenna Udenberg 8:29
(laughs)
Rich Bennett 8:30
Be able to make money, we know that.
Jenna Udenberg 8:32
(laughs)
Rich Bennett 8:34
right.
Jenna Udenberg 8:34
All
Rich Bennett 8:35
So you were diagnosed at eight years old, you said?
Jenna Udenberg 8:38
Uh, diagnosed
Rich Bennett 8:39
Or--
Jenna Udenberg 8:39
at seven and in a
Rich Bennett 8:40
wheelchair. Seven? In a wheelchair by A. J.?
Jenna Udenberg 8:44
Yeah.
Rich Bennett 8:45
All right. So how was that going to school and everything?
Jenna Udenberg 8:48
It--
Rich Bennett 8:48
I mean, I had to be hard on your mental health alone.
Jenna Udenberg 8:51
Oh, yeah. It was--it was a bear, because this was back in the late '80s. So,
Rich Bennett 8:55
Mm-hmm.
Jenna Udenberg 8:56
pre Americans with Disabilities Act. Pre--
Rich Bennett 8:59
Oh, shit.
Jenna Udenberg 9:00
Pre Schools with-- That's okay. Pre Schools without having, you know, accessible buses with lifts. Pre, you know, really-- I mean, yeah. Section 504 and IEP is not that thing were there, but not--
Rich Bennett 9:14
Yeah.
Jenna Udenberg 9:14
not for someone with my type of disability. So I broke a lot of mental scripts and protocols in the education system because they were so used to kids that were fully involved. And then, therefore, they were just in the DCV classroom, or the high needs classroom, and they weren't mainstream. They weren't-- you know, they definitely were not a lead trimpa player who had to go to honor bands and honor jazz bands and competitions and pet bands, you know. So I just like blew their mind away with all of the accommodations and things that should have just been there from day one, but I got to be the
Rich Bennett 9:49
Yeah.
Jenna Udenberg 9:50
reason and the picture and the face of those kinds of changes. and you know I had some teachers that were super great. I had other teachers that, you know, they saw that I was on their roster and they're like, you are not my students. You belong to this
Rich Bennett 10:05
What?
Jenna Udenberg 10:05
special ed person or you belong to this adaptive PE teacher or, you know, uhm, you know, other,
Rich Bennett 10:13
Wow.
Jenna Udenberg 10:24
I just sit at my accessible table that they're already brought in and draft and draw
Rich Bennett 10:31
Right.
Jenna Udenberg 10:31
and oh, yeah, nope and then yeah So I have lots of lots of
Rich Bennett 10:35
Ugh.
Jenna Udenberg 10:35
stories of just ignorance and and that and you know again We don't know what we don't know. I don't hold it against those people those stories in that time You know made me who I am do I wish that I wouldn't have had to go through a lot of those hard things So I wish my parents didn't have to go through The advocating and the constant fights with insurance companies and education systems and all that Absolutely, but I also know
Rich Bennett 10:59
Yeah.
Jenna Udenberg 10:59
that we are a stronger Better family unit because of what we went through
Rich Bennett 11:03
because of it. Yeah Well not any day. I think you know because of what you what you went through and the advocating and everything you're also helping others
Jenna Udenberg 11:12
Yeah, and
Rich Bennett 11:13
I'd even have a voice Wow
Jenna Udenberg 11:15
Absolutely, and that's what led to my career, right? I had an amazing middle school band director who inspired me And that was the path that I wanted to take and so I took it and I got a double degree in instrumental and vocal music education, but even in that it was riddled with discrimination You know almost lawsuit at the university level Lots of cases filed with the chancellor, you know, I mean And then getting done with a whole degree and having a professor and one of my cooperating teachers kind of doing that whole Pad on the back of oh good for you, but we hope to see you back when you find your love for teaching and maybe it'll be teaching special ed Because you could do more good in that space and I was like boy what? I just went through four and a half years in getting this degree and showing you what I can do and all these things And that was your answer on my final day And so I share a lot of these stories in God and all the things but yeah, you know when you look up to these people who are Who really are your mentors in your roles of life? And it's just like wow my work and just me being me obviously wasn't enough to change your attitude or change your words And I think now throughout my career that has changed but
Rich Bennett 12:33
Hey, have you by chance
autographed any copies of your books and giving them to those people?
If not you should
Jenna Udenberg 12:44
truly miss out a nice passive aggressive Action oh
Rich Bennett 12:49
I would do it in a heart beat it all heart beat Wait, wait a minute you mentioned so you said vocal and instrumental
Jenna Udenberg 12:59
yeah,
Rich Bennett 13:00
so you sing as well
Jenna Udenberg 13:01
I do
Rich Bennett 13:03
All right, I'm not gonna put you on the
Jenna Udenberg 13:04
spot
Rich Bennett 13:06
But I did I do have to ask you this you said you you a bugle or you For military like honors and everything So you do taps? Oh god
Two songs that'll bring tears in my eyes Yep Taps an amazing grace
Jenna Udenberg 13:28
absolutely
Rich Bennett 13:30
I just oh the we I gotta tell you this story real quick, so For years I would take my family and friends to the Marine Corps barracks watching in D. C Eighth and I for the Friday evenings for the night parades, which is the drummin of you go core and Silent drill platoon and it always ends. I don't know if you ever seen the barracks there, but it looks like a castle
Jenna Udenberg 13:55
Okay,
Rich Bennett 13:56
and it always ends with the bugler at the top of the cruise nest or whatever you want to
Jenna Udenberg 14:01
it
Rich Bennett 14:01
call
Jenna Udenberg 14:02
Playing taps Wow,
Rich Bennett 14:05
and there's never a dry eye in the house It's just yeah I Wow I can't all right, so
Jenna Udenberg 14:15
Hmm
Rich Bennett 14:17
Was there actually a moment in your life when you realize that your challenges could actually Become a platform for purpose that you can recall
Jenna Udenberg 14:28
Well, I would say early on I have had so many people and especially in my medical teams like Johnny got to write a book you know, and usually it was like seeing me coming through things or you know, whatever. And this is kind of crass and really embarrassing, but I remember the first time was a family friend and we were at the local rehab unit and she worked there and I was the middle of physical therapy and that was decades ago when the standing frame your butt was literally in a sling to connect you to this that helped told you up. And so literally as she's like walking behind me, right? She's just like, huh, now your butt is in a sling. You really need to write a book and I was like, I don't know if that's a compliment or what, but I'm like, okay fine here we go. You know, but and I also think that I was somebody that looked up to so many different people and whether it was
Rich Bennett 15:24
something mm-hmm,
Jenna Udenberg 15:25
Just like new, but you know even back when I was a sophomore junior in high school, I was a pure mentor, I was a pure helper, I was doing these things because that's how I was raised right. You when you get into a space you leave it better than you found it is kind of
Rich Bennett 15:41
yes.
Jenna Udenberg 15:41
the work ethic of my family. And now throughout my journey and especially after, you know, the 2020 Bush Fellowship and Ablandon Community Leader, Fellowship and cohort and the Shannon Institute as well, you know, I think my new mantra is people. So not just leaving spaces better than what you found them, but leaving people
Rich Bennett 16:03
about
Jenna Udenberg 16:03
better than what you found them. And the same thing happens for me, right? Because every relationship, like the word tapestry for my book, every relationship its impact. Even today you and I will never be the same because we have connected with each other and our stories have worked off and now we we know these deeper intimate things about each other that we've been allowed to share on this platform. And so that's just beautiful and so strengthening and encouraging for all of us.
Rich Bennett 16:31
For those people listening that don't know, explain what the Bush Fellowship is.
Jenna Udenberg 16:37
Yeah, awesome question. I know I do what it was for a long time.
So
Rich Bennett 16:44
I know it doesn't mean your friends with the Bush family.
Jenna Udenberg 16:47
No, and it's a different Bush family
Rich Bennett 16:50
actually. Right.
Jenna Udenberg 16:50
So
Rich Bennett 16:51
and not the Anihiser Bush one either.
Jenna Udenberg 16:53
no wrong spelling.
So Archie Bush, and I don't remember a ton of the story. I'll be very honest and vulnerable with that. But he and his wife, Edith, created a foundation. And so that is housed in Minnesota, but they offer services and grants and their coveted Bush Fellowship. For anybody in Minnesota, North Dakota, South Dakota, and the 23 tribal nations that are in those geographic areas. And so once a
Rich Bennett 17:25
Oh,
Jenna Udenberg 17:25
year they select, I believe when I went through as 26, I think now they're up to 30 and you can opt into a one year or a two year Bush Fellowship. And in that they give you a certain amount of money when I went through as 50,000 a year. And you
Rich Bennett 17:40
wow,
Jenna Udenberg 17:40
is that? Yeah, total pivot point in your life, right?
Rich Bennett 17:44
Yeah.
Jenna Udenberg 17:45
So you can use that for a pre-described program like if you're going for your bachelor's or master's or doctorates or some kind of certification or what have you or you can do a self-described self-oriented
project. So I chose the latter of the two because I had just gotten through my master's of education. I was like, I do not want another master's. I do not want more groups to jump through. I want to do something different.
And so anyways, it's just really an investment in yourself and in your leadership. So some folks, you know, it was their passion projects. It was about their job for others.
Rich Bennett 18:23
Right.
Jenna Udenberg 18:23
It was like, I am burned out. I needed to use this money to pay my bills. To take a sabbatical from my work or my job. I need to like take care of me so I can become a better leader. So it really could be a whole gamut of how you want to design it. And when I went through it, I think there was four tiers of application process. And really, I mean, even if you don't live in those three states or those tribal nations, I would recommend anybody going to the Bush Foundation. org site and you can see their questions through the application process and just really like taking the time to invest in yourself to truly answer those questions is a work of heart already. And so it's just so impactful. And for me, long story short, you know, we were applying in 2019 and their tagline is think differently think bigger. So here I am like I have never flown because I'm a wheelchair user and the airline system breaks 100 wheelchairs a day. Why would I want to
Rich Bennett 19:27
What?
Jenna Udenberg 19:27
make a chance? Oh, yeah. YouTube at some
Rich Bennett 19:30
Wow.
Jenna Udenberg 19:30
time. amazing videos of how they treat our very expensive equipment and lots of Accessible airline acts and those kinds of things trying to get through our government and through policy
Rich Bennett 19:43
Wow,
Jenna Udenberg 19:43
change
Rich Bennett 19:44
I had no idea
Jenna Udenberg 19:45
Yeah, so you can literally see them like tossing power chairs like up their conveyor belts and then like workers laughing as the chair falls off of him Bear belt and oh, yeah, it's
Rich Bennett 19:55
oh they would be fired.
Jenna Udenberg 19:56
Yeah, oh, but they're not So right yeah,
Rich Bennett 20:00
but they're probably union. That's why not
Jenna Udenberg 20:02
Well, or something right yeah And so anyway is with that I was thinking bigger and I'm like all right I want to travel to the places where the wheels have wheeled I want to be out in Berkeley, California where Ed Roberts was for section 504 and IDEA and ADA You know, I found out who Judith human was and if you don't know who she is Goobler and reader
and if you're more of a movie person go watch Crypt Camp because you'll learn way more about the Americans with disabilities act and how all of that came to be But I wanted to wheel and be in those spaces where they've been and I wanted to go to champagne or banana and Illinois to see one of the biggest rehab facilities in our nation and be in
Rich Bennett 20:45
Mm-hmm
Jenna Udenberg 20:45
those spaces and I wanted to go to Florida There's a community that completely revamped their whole community and every single Store has power buttons every single bathroom is wheelchair and accessible friendly people have gone through training and Just all the things and I'm like well if that's not enough I might as well go bigger go home So then I was like I'm gonna go to Sweden because there's no one to be the most accessible country in the world And that's where my ancestors are from and Northern Minnesota has a very similar climate So it's like well if the Swedish government has figured out how to Do a curb cut to certain way your design their roads a certain way or you know like can we learn from them? Why do we always as Americans have to reinvent the wheel like let's learn from others and do it smarter and better But then you know, there's this little thing that's called COVID-19 happens and so as we were planning about all these amazing things and you know life change
Then I was struck with oh my invisible disability, which is my immune system shit
Rich Bennett 21:48
Oh
Jenna Udenberg 21:48
and so between you know being immunocompromised By my arthritis by my diabetes and then all the medications I take because of them I was a very vulnerable population through the whole pandemic and so well my other cohort members Got to just postpone their travels for a year or two. They can still go do their thing But for me, it was like I am not gonna risk my life or the quality of my life To just go and do these things so you know, I was but in hindsight it was great because Everybody was forced to be at home Everybody was forced into a new way of life and I could communicate in the same way that you and I are communicating through technology With all these higher ups and these people that I would have never had an opportunity to connect with If I would have just been this Minnesota country bumpkin wheeling along in Berkeley, California, right? So it almost made this amazing playing field for connection and relationships that would not have happened had I physically been able to be there so so
Rich Bennett 22:56
yeah Wow. Did you ever make it to Sweden yet?
Jenna Udenberg 23:00
I had to have never flown. So I'm still
Rich Bennett 23:03
still
Jenna Udenberg 23:03
Still
Rich Bennett 23:03
not
Jenna Udenberg 23:04
on my my wheels are on the land
Rich Bennett 23:06
you you mentioned something which scares the hell out of me
Jenna Udenberg 23:10
Yeah, alright
Rich Bennett 23:11
So you mention your auto your auto immune is a Yeah
auto immune System, but you also mentioned that you so you have diabetes as well
Jenna Udenberg 23:21
Yeah, so I was treated for a very long time with prednisone and so that's
Rich Bennett 23:27
the
Jenna Udenberg 23:27
one of
Rich Bennett 23:27
Okay,
Jenna Udenberg 23:28
and mess with your pancreas and your whole adrenal system
Rich Bennett 23:30
mm-hmm
Jenna Udenberg 23:31
Plus genetics, and I've got several
Mom sisters that kind of stuff that have diabetes as well So between the genetic pool and my treatments is system. Yeah. I'm a
Rich Bennett 23:45
two
Jenna Udenberg 23:46
type
Rich Bennett 23:46
If you don't mind me asking cuz diabetes runs in my family,
Jenna Udenberg 23:50
okay,
Rich Bennett 23:51
as well And you know the doctors always tell us it exercise because it would help
Jenna Udenberg 23:57
Mm-hmm
Rich Bennett 23:58
but with If you don't mommy is if you being in a wheelchair how
Can you actually battle diabetes as you know as well and help out of that?
Jenna Udenberg 24:11
Yeah,
Rich Bennett 24:11
can you?
Jenna Udenberg 24:13
um, so yeah, I mean there's adaptive sports my biggest way
Rich Bennett 24:16
Okay,
Jenna Udenberg 24:16
of getting exercise and heart rate up is in warm Thierry people's so I can walk and run and do all those kinds of things in the aquatic pool
and then, you know, I've got a new step at home. So I was another thing that was very thankful for the fellowship because then because everything was at home and I couldn't get out to the gym and I couldn't get to physical and occupational therapy and all the things I was able to truly use some of my fellowship funds to make my life fully able in my
Rich Bennett 24:47
home.
Jenna Udenberg 24:48
So I was able to invest in myself and another awesome thing I was able to get is a real mobility firefly which is an electric third wheel attachment that goes in the front of my manual chair. And that has opened up tons of adventures of paved trails and working with, you know, state rehab places and also, like the DNR and state parks and all that kind of stuff. So there's just so many adaptive programs I can get you the exercise, outdoor abilities, all the things you just have to be able to find those spaces and hope you live close enough to benefit from them.
Rich Bennett 25:26
Eventually, we're going to get into the book, but I mean, I, I, talking about ADA and I always say people with differing abilities, but I know you say disability is not
Jenna Udenberg 25:40
one.
Rich Bennett 25:40
a bad
because I have, there's a company here called real life prosthetics and they, they bring people on all the time that have prosthetics and the last time they were on, they had three young ladies on and they, and I didn't even know it was around here,
Jenna Udenberg 26:00
And
Rich Bennett 26:01
but they found a local nonprofit where they have, they're, I guess you could say like, carts and wheelchairs that are designed for people with disabilities. And they take these adventures, almost like racing trails through the woods.
Jenna Udenberg 26:19
Yeah.
Rich Bennett 26:19
It's pretty wild. But one of the, and I had somebody else on that was a big, big champion in advocating for the ADA. One of the things that I, I still don't, I think it's missing. You're seeing a lot of businesses and everything. They are finally becoming ADA compliant. Even a lot of your parks are now, and you see, well, like I just mentioned the trails, but with new home construction, it seems like they're still missing the boat, or am I wrong there?
Jenna Udenberg 26:58
Nope. You're a hundred percent of my opinion.
Rich Bennett 27:00
Why is that not something that, especially for new homes, I think it should be mandatory, whether it's the ramps, the buttons, anything. I mean, you saw the very debt. Is it called the Veridus? The Desert can raise and lower.
Jenna Udenberg 27:18
They
Rich Bennett 27:19
should be able to do that with new in new homes of kitchen counters. I mean, just different things. Fight for
Jenna Udenberg 27:28
I am, but the part is everybody believes they've believed that they've drank the Kool-Aid,
Rich Bennett 27:34
it,
Jenna Udenberg 27:34
that
Rich Bennett 27:35
Jenna.
Jenna Udenberg 27:35
accessibility
Rich Bennett 27:35
Fight for it. Yeah.
Jenna Udenberg 27:35
is expensive. Or they've drank the Kool-Aid that only old people get disabled. Or they've drank the Kool-Aid that disabled people don't live independently. There's always somebody there to help them. I can cook for them, or can do all these things for them. And so that's my biggest challenge is, and they believe that the Americans with Disabilities Act is the code, and they can only do that. So, hence above and beyond, of above and beyond with you means you can go above and beyond code and you should. Disabled people in every aspect of your building plan. From the very beginning of your ideas. Not, we already got it all built. Now come and do an assessment for us and pat us on the back and put a sticker on our nose. And, you know, all those things, that's our very trite. And it's like, that's not it. And, to answer your question too, I've had those conversations, at least with some of our local government. And their biggest thing is, we're not going to create a city ordinance because that's overstepping. But nobody is going to know. Nobody is going to know that this is a thing, or that they should be thinking about this. So when they're creating their house, that they hope to live in 20, 30, 40, 50 years from now, or even tomorrow, like the disability community and culture is the most diverse minority. We are the largest minority in the world, and anybody can enter into our customs and our culture and our community at any moment. No matter how they acquire their disability, through a diagnosis, through an accident, through an injury, through something of their own, through something at that
Rich Bennett 29:16
time.
Jenna Udenberg 29:19
The flip side is like, well, we can't say that this building is accessible or that it's an ADA compliance building. >> Because then, if we're going to say that, then we have to bring all the other codes up to this and I'm like, I get that. However,
to say that every time we're putting in a new vanity and any bathroom that we're going to put in a vanity that can become ADA compliant by removing the bottom or, you know, you don't have to use that label of being a hundred percent ADA compliant because number one, there's no such thing as being a hundred percent. >> And number two, my other big thing I talk about is like, stop trying to be compliant and be committed. Because compliant means, here's this checklist and I can check every single box of this is the width of my doors. This is how you can roll under our sinks. This is, you know, dat, dat, dat, dat. But committed is, oh, I see rich in Framemy. Rich is my tenant. Rich has these needs. We're going to do what we need to do so rich can be safe. So he can be independent as much as he wants or needs and that he can feel valued and feel empowered to live
Rich Bennett 30:44
>> There.
Jenna Udenberg 30:45
independently in his space. And if that means that I'm going to also tick off some of these boxes of the compliant chart, great, but I'm probably also going to go above and beyond what this says again, because we're committed to rich being successful and safe in his living environment. And so, you know, so often and then even in these conversations, it's all about low-income, it's all about senior housing, it's all about, you know, all these other areas, which is all fine, but the keyword is and.
Rich Bennett 31:18
>> Yeah,
Jenna Udenberg 31:19
>> And there's a young family down the street that just had a child born with a disability. Or there's this middle-aged family down the street, that son just got into an automobile accident and now is an incomplete paraplegic.
Rich Bennett 31:33
yeah.
Jenna Udenberg 31:33
Like it's not just about the extremes, you know, and kind of the same thing if you think about like accessible playground, right? What's the first thing you think of when you think of an accessible playground? What demographic do you think of? >> Yeah, probably a little kid in a wheelchair, right?
Rich Bennett 31:51
Yeah, yeah.
Jenna Udenberg 31:52
Potentially, okay, well rich, what if you're disabled
Rich Bennett 31:57
the
Jenna Udenberg 31:57
caregiver and your non-disabled kid gets heard up on the top tower, you need to get to your grandchild to help them.
Rich Bennett 32:06
>> Right.
Jenna Udenberg 32:06
So it's flipping that script of like what assumptions, what biases are we holding, which we all do, because we're human.
Rich Bennett 32:14
>
Jenna Udenberg 32:14
So there's no shame, there's no guilt, there's just education. So, you know, what are we thinking about, and then how can we flip that to make sure that we're accessible for all that are coming, whether it is that little kid in a wheelchair or using a walker or who is blind, whether it is a kid with autism that you also need to think about keeping them safe with fencing to make sure that they're not going to, you know, get injured in other ways. Like, there are so many things, so many hard and good and rich conversations that we need to have around all of these topics in different spaces and in different relationships.
Rich Bennett 32:48
>> You're listening to conversations with Rich Bennett. We'll be right back.
When life changes in an instant, your ability to move forward shouldn't have to. That's why I want to tell you about real life prosthetics, where restoring ability isn't just a mission, it's a passion. Real life prosthetics is dedicated to helping amputees regain mobility and independence with advanced custom design prosthetic solutions, whether it's upper or lower limb prosthetics, their expert clinicians work hand in hand with their clients, creating devices that fit comfortably, function naturally, and empower people to reclaim their active lives. They understand every journey is unique. And so as every prosthesis they craft with cutting edge technology, compassionate care, and a commitment to real world results, real life prosthetics is changing lives every single day. If you or someone you know is facing limb loss, visit reallife prosthetics.com, and see how they're restoring ability. >> I want to go back to the hooms, still thinking about the hoons, but when you mentioned the kids, and something that a lot of people don't realize and I had a young gentleman on him and his wife have a young boy, not that old. He was born with disabilities, confined to wheelchair.
Jenna Udenberg 34:20
>> Okay.
Rich Bennett 34:21
and which means throughout his life, they gotta keep making changes in the house, because as you grow, you get bigger, things change. With living in a house that is not ADA compliant, because it's not law yet. And excuse me for saying this. Bullshit,
Jenna Udenberg 34:42
it's- 100% I'm with ya.
Rich Bennett 34:47
Does insurance or anything cover any changes that the family has to make? That you know of.
Jenna Udenberg 34:57
So I don't know necessarily about insurance. Like if you acquire your disability through an accident, and if you have a lawsuit and you're winning in that, sometimes, that, even other persons insurance can have to pay for the accommodations of your home, but like in your example, it would be for those things that are at that moment. So
Rich Bennett 35:21
yeah.
Jenna Udenberg 35:21
if that family is really knowledgeable and is paired up with people that can think long term and somehow finagle it. So it helps them in 20 years, but also meets the
Rich Bennett 35:31
Well,
Jenna Udenberg 35:31
immediate
Rich Bennett 35:31
But
Jenna Udenberg 35:31
need, right.
Rich Bennett 35:33
even with you, if juvenile arthritis growing up, you still need it to have changes.
Jenna Udenberg 35:37
Right.
Rich Bennett 35:39
So the insurance covered that at all?
Jenna Udenberg 35:40
No, that was all. It's called a disability tax. Being disabled is more expensive. There's just no if andger.
Rich Bennett 35:48
But you can't- but you can't put a price on life.
Jenna Udenberg 35:51
Exactly. Yep. So.
Rich Bennett 35:54
I get burned- I get burned up in these
Jenna Udenberg 35:56
about-
Rich Bennett 35:56
conversations
Jenna Udenberg 35:57
Right. So in Minnesota, we have what we call caddy waivers. And we have other entities at least currently. This is given day one. We're. knows about tomorrow?
Rich Bennett 36:09
Who
Jenna Udenberg 36:10
But different programs where if I were to be the homeowner, they would kick in so much money. But the example is is like, I have to own the home.
Rich Bennett 36:20
Okay.
Jenna Udenberg 36:21
Well, that can be fine for some of the systems.
Rich Bennett 36:23
Not people that are renting,
Jenna Udenberg 36:25
but that can not work. If I have an asset limit,
Rich Bennett 36:29
yeah.
Jenna Udenberg 36:29
Because of my medical insurance or because of other systems that I need to make my life independent. So my sister can't own the home for me. And I'm her renter. Doesn't work can't work if it's a building that you're renting out to someone who has a disability. And then also the burn a few years ago when I was still teaching and looking at actually becoming a homeowner, I was like, all right. So I need to have this oven that opens to the side and that the range and the oven are separate. Well, your household more than likely you have one device that does all those things for you.
Rich Bennett 37:07
Right.
Jenna Udenberg 37:08
So I have to come up with the amount of money to buy a regular rich version of a And
Rich Bennett 37:17
oven.
Jenna Udenberg 37:17
range all together fine, not a big deal. But then they will only come up with the extra amount of what it is.
So then I would have to choose. Okay. I'm gonna buy an oven, which is what? I don't know for for numbers eight, because I'm a music teacher going to four is good. We'll say a thousand bucks. Okay. You
Rich Bennett 37:38
Yeah.
Jenna Udenberg 37:38
see numbers. So if you say an average not disabled, not accommodated stove is a thousand bucks. Well, if I need to buy the two and this one is 1800 and the other one is 2000, I have to come up with The other 28 hundred dollars, because I can't
Rich Bennett 38:02
right.
Jenna Udenberg 38:02
get both of them covered. I have to choose. And so I'm like, well, then what do you choose in your house? Because
Rich Bennett 38:08
Yeah.
Jenna Udenberg 38:08
the same thing happens for a wheel and shower, well, for regular shower only costs XYZ, but a wheel and shower that is larger space that has different handling that has all the things. Yeah. So I mean, they get you whether you're coming or going and it is a huge
Rich Bennett 38:25
investment.
Jenna Udenberg 38:26
And so even when I was going through my bush fellowship, part of it was, you know, what's your plan for self care? So their goal for us is to have monthly like retreats,
Rich Bennett 38:37
no
Jenna Udenberg 38:37
way for a day or a night or whatever. Well, there's no local lodges or hotels. Like I could have stayed in a hotel, but in the pandemic, that was just not a thing. So I needed
Rich Bennett 38:45
a right
Jenna Udenberg 38:46
to stand, stand alone kind of a situation, not a single one in the whole Northern state of Minnesota would have
Rich Bennett 38:53
my
Jenna Udenberg 38:54
met
Rich Bennett 38:54
Wow.
Jenna Udenberg 38:56
So then I had a local business person have enough hoots, but to tell me that this able person who has all these assets, my myths and all these other systems. Well, you know what, Jenna, you should go and invest, you should buy all these properties and you should make these resorts and you should make me and what trillionaire army behind me is going to make that happen. Like that's a great idea. And there are some disabled people that could probably do that. Cause just because you're disabled, doesn't mean you're on systems. Doesn't mean
Rich Bennett 39:27
right.
Jenna Udenberg 39:27
you have all these other things. But it's frustrating. And the more that I'm starting to learn is like, we have a local resort in previous ownership. So not reflecting on current, but previous they came back and said, well, we don't have to abide by ADA. Because we are just three HOAs put together. So we're not a business. We have no public spaces. And we're actually HOAs.
Rich Bennett 39:53
Wow!
Jenna Udenberg 39:54
But to me, I don't care. I want to come and have a pool party at your establishment. I want to be able to go to your restaurant. And I want to be able to have a retreat for myself or for whatever entity I'm throwing. But it doesn't matter to them because legally, they don't have to.
Rich Bennett 40:10
That's ridiculous.
Jenna Udenberg 40:11
Do you know how many millions to billions of dollars the disability community spends every year in travel and leisure? Nope. You're assuming we're all in group homes. You're assuming we all are below poverty. You're assuming we're all in institutions. And that is wrong. And it is
Rich Bennett 40:31
not
Jenna Udenberg 40:31
okay. Right. And I'm like, you were missing out on millions of dollars every year, especially being on the beautiful Nordshores of Lake Superior. And all the amazing activities and things. So it's a very complex system. It's very frustrating many times. And, you know, also with code 2, it's like, I'm like, oh awesome. That that that establishment just got repaved for the parking lot. And then I drive in and I go, oh, you don't have accessible parking. Or you do, but your access aisle is a foot wide because back in 1995, that was what code is. Current code today is you have to have one van accessible spot. The actual spot has to be wider than a regular car.
Rich Bennett 41:19
Right.
Jenna Udenberg 41:19
And the access aisle has to be 11 feet
Rich Bennett 41:23
11 feet.
Jenna Udenberg 41:24
Mm-hmm.
Rich Bennett 41:25
Okay.
Jenna Udenberg 41:26
And so, yeah, 11 because our because we need at least 8 feet to get out of our ramp. If it's
Rich Bennett 41:32
right.
Jenna Udenberg 41:33
And so it just boggles my mind that our local schools, the local businesses and other entities and spaces I've been in when the pay, Paving Company comes into redo it, they literally just plot everything that was there before. So trying to figure out where in this cycle of business, where in this cycle of industry and building, where in all these cycles of things, education is missing.
Rich Bennett 42:01
Yes.
Jenna Udenberg 42:02
Common sense is missing connection to disability community and advocacy is missing. But then the hardest part is like, well, we just blew our budget for the next 5 to 10 years on getting this project done. And so, oh, sorry, but we'll get back to that later. And again, no shame being thrown, no whatever being thrown. But it's like, how do we get in front of this? So you don't have the same issue in five years, or so business XYZ down the road doesn't do the same thing.
Rich Bennett 42:33
Yeah.
Jenna Udenberg 42:34
And you're still saying from the very onset of people driving into your parking lot, we are not on it here. We
Rich Bennett 42:40
I
Jenna Udenberg 42:40
are not.
Rich Bennett 42:41
take it. I take it. They can't be fine for that.
Jenna Udenberg 42:45
No, because there's, there are no ADA police, right? Our mechanism as disabled people is to hire a lawyer and suit.
Rich Bennett 42:54
Which costs money.
Jenna Udenberg 42:55
Right. And so with above and beyond with you, our whole thing is we are focused on education, we are focused on partnership and authentic partnership. Not just higher stick and assault and give you the stamps or give you the paths, but
Rich Bennett 43:10
right
Jenna Udenberg 43:10
have these hard conversations. Let's let's move forward together. Let's make it, you know, gains towards accessibility and inclusion. And then, all right, what's the next phase? All right, now what's the next step? All right, what's on the next step? And all be learning together because it just... It isn't working. And again,
Rich Bennett 43:28
No.
Jenna Udenberg 43:28
that's why I keep saying there's no shame because we don't know what we don't know. But it's so hard to figure out in these cycles. How do you break them?
Rich Bennett 43:37
So is that with the above and beyond with you? Is that a nonprofit that you actually started?
Jenna Udenberg 43:44
Yeah, so I'm the founder
Rich Bennett 43:45
All right.
Jenna Udenberg 43:46
and yeah, nonprofit.
Rich Bennett 43:47
All right, because I was gonna be my next question, not about above and beyond with you. But do you know it? And maybe your nonprofit does this? I don't know. But are there, you know, especially since insurance doesn't cover a lot of these changes that people need in their household. Do you know of any nonprofits that help out with that?
Jenna Udenberg 44:10
I'm not off the top of my head. And I think that's also part of the hardest part of disability community is that we need to create ways of being sustainable. So there's lots of
initiatives, there's lots of fire and brimstone. There's lots of...
Rich Bennett 44:32
Right.
Jenna Udenberg 44:33
We're mad as heck, we're not gonna take it anymore. But then that lead person... get sick and they're taken out of the work for a while or they're no longer with us
Rich Bennett 44:43
Yeah,
Jenna Udenberg 44:43
or you know all those things kind of happen and also it's hard because I as somebody who uses a wheelchair can't speak for somebody who is blind or deaf
Rich Bennett 44:54
right.
Jenna Udenberg 44:54
or
Rich Bennett 44:55
Okay.
Jenna Udenberg 44:55
you know all the different types of disability and I'm very honest with that because I don't it doesn't feel good when other people think they know what it's like to be in a wheelchair right so I don't want to do that to anyone else um but think more and more as we have these conversations and we're forming collectives and co-ops and all the things and that's why I went the nonprofit route and what I founded because the high part is is there's all these great philanthropic foundations and all this money but you have to be a 501c3 to get that money
Rich Bennett 45:27
right
Jenna Udenberg 45:28
well in our small rural communities mom and pop restaurant has no ability there are no inroads to get to those foundations and those philanthropic monies and funds so I'm still trying to navigate the whole legal tax system and all those kinds of things because what I would love to do is we have that status so we can go and get the funds and then we create the programs to partner with these other agencies entities and small businesses to be like you're a one level organization awesome but you have a gravel parking lot that doesn't work in
Rich Bennett 46:10
way
Jenna Udenberg 46:10
a
Rich Bennett 46:10
yeah
Jenna Udenberg 46:10
that doesn't work for somebody who uses a van with a side entry like I have that doesn't work for people who have low vision that doesn't work for you know xyz yeah or your bathroom is so close to being accessible but you need to move the toilet by like three inches away from the wall and you need to put up some bars and you need a different toilet paper dispenser right like I want to be able to be like let's work together you provide what you need to provide we help you provide the next part and then we're going to promote it because that's the other part of above and beyond with you so often people make things accessible and then they go well those wheelies never came well we provide a DSL interpretation but the diff the diff folks they never they didn't come to the event so why did we spend xyz and I always go well did you promote it and if you did did you promote it where we look
Rich Bennett 46:58
to the right place yeah
Jenna Udenberg 47:00
and then was it accessible in what you promoted and usually people are like oh should have had a v8 and then like great should have should have involved us in your whole process we would have cracked that v8 for you
Rich Bennett 47:15
all right what is the you in above and beyond with you because it's the letter u
Jenna Udenberg 47:19
yes good question so when I was teaching little kindergarters in five year olds cannot say Udenberg very well because I can
it's not to my music career and that's why with in our logo is so big because again like we said earlier it's not about just like flashing the pan quick training we want to be
Rich Bennett 47:42
so
Jenna Udenberg 47:43
with you in that whole process of education so yeah
Rich Bennett 47:49
I love that so now with above and beyond with you you are five or one see three
Jenna Udenberg 47:55
we are
Rich Bennett 47:56
so you accept their nations right
Jenna Udenberg 47:58
we do
Rich Bennett 47:58
all right so something very important all right all you listening make sure you pay attention to this tell everybody how they can make it donation
Jenna Udenberg 48:08
you can go to above and beyond with you dot ord that's our website you can buy my book from there and all the proceeds go to
Rich Bennett 48:15
not
Jenna Udenberg 48:16
are
Rich Bennett 48:16
oh really
Jenna Udenberg 48:17
you can make donations through PayPal you can send us a check to our peal box and we're updating our website to to have other things also Minnesota does Minnesota give day or give Minnesota so if you want to go to that website that's also connected to our website as well so yeah lots of ways to get involved and you can find us on Facebook and LinkedIn and Insta so there's always different connections to us
Rich Bennett 48:42
all right what's your big goal for above and beyond with you what we where would you like to see it in five years
Jenna Udenberg 48:51
for the nonprofit itself
Rich Bennett 48:53
Mm-hmm
Jenna Udenberg 48:54
I love that um I would love for us to be at a place where we are common in conversations because if we're common in conversations it means that we haven't just promoted ourselves but we have
Rich Bennett 49:15
mm-hmm
Jenna Udenberg 49:16
made the relationships and we haven't just made the superficial relationships but we have done the hard work we've built long-lasing relationships and it isn't just local in small rural Minnesota but it's beyond
Rich Bennett 49:32
yes which would explain the beyond
Jenna Udenberg 49:37
(laughter) correct
Rich Bennett 49:39
and in ten years international why
Jenna Udenberg 49:44
We're taking on Sweden. No, just kidding.
Rich Bennett 49:46
You know what, and I'm hoping within the next five years that you are able to get to Sweden. I didn't realize that they are that big when it comes to disabilities and everything. I had no idea. Actually, you keep mentioning conversations. How come you don't have a podcast?
Jenna Udenberg 50:10
That was one of my first conversations stepping out in this role and the ladies like, "You have such a great voice and personality that you need to do this thing called a podcast," and I was like, "I don't know what that is," and whatever. Then now that I've been in this circuit, I was like, "I really dig this, and this is a lot of fun," and, but then when I've talked to some of you podcast, what was some like, that's also a lot of work. So for right now, I'm good being a guest and maybe.
Rich Bennett 50:37
It is a lot of work. You're right. It is a lot of work, and you focus on the advocacy and everything else, and get people like me to help get the word out. As a matter of fact, here's something I want to offer to you, because, you know, especially with what you're doing, you know other people that have disabilities as well. Find some maybe, well, just find however many you can, that have the ability to record a podcast like you do. it doesn't matter where they're at. And we'll do some roundtables on it to help spread the word, because you're right. The conversations is what's going to help. You know, and when it's like, like if my podcast is carried over, I forget the exact number, but it's over a hundred countries. So all those other countries hear about it, all the states hear about it. Maybe somebody will say, "Damn, they're right. We need to make a difference. We, all contractors should be doing..." We need a... And I do know there are some nonprofits out there that will help with, as far as the construction
Jenna Udenberg 51:54
And
Rich Bennett 51:54
will help with it, what they can. I know with our Lions Club, we have put ramps in for people's homes to help with that. But there's still other things that, you know, like you mentioned, the stove, the oven, refrigerators.
Jenna Udenberg 52:10
Yep.
Rich Bennett 52:11
Because, you know, you have a hell of a time, I'm sure reaching the freezer
Jenna Udenberg 52:16
Yep,
Rich Bennett 52:16
unless it's a side by side, but still the top shelves.
Jenna Udenberg 52:19
yeah.
Rich Bennett 52:19
You look at cabinets. And people don't think about
Jenna Udenberg 52:21
things.
Rich Bennett 52:21
these
Jenna Udenberg 52:22
Right?
Rich Bennett 52:22
But at the same time there, and I forget the, I forget what it, if it's a disease, whatever it is, giants. You know, there are some people that are seven foot, and above,
Jenna Udenberg 52:35
Yep.
Rich Bennett 52:36
it's fair for they're back trying to bend down to that sink or whatever. So you need the higher thing.
Jenna Udenberg 52:42
Yep.
Rich Bennett 52:42
There's um, oh yeah, this is,
this is, I think this has been an ongoing battle since, well,
since it's biblical time. Probably.
Jenna Udenberg 53:00
Right?
Rich Bennett 53:00
You think about it. I mean, this, disability is not something new. It's been around forever. And it, it, it teased me off that it's taken so long for people, businesses, all that to realize that they need to make changes.
Jenna Udenberg 53:21
Yeah.
Rich Bennett 53:22
Because we're all the same. Whether you're in a wheelchair, whether you're a little person, you know, whatever, whether you're blind, everybody's the same it, everybody should have the same access to everything.
Jenna Udenberg 53:37
Right.
Rich Bennett 53:38
Oh god.
Jenna Udenberg 53:40
Yeah.
Rich Bennett 53:40
Five of people we could have some good round tables. Alright, so the, the book.
Jenna Udenberg 53:45
Yeah.
Rich Bennett 53:46
Talk to me when you're talking about it. Uh, within my spokes, explain the title. I, I think I know how to explain
Jenna Udenberg 53:56
So within my spokes, I have a great friend, a former board member who helped me in wordsmith the title. Um, so after getting my real movable, real mobility firefly,
Rich Bennett 54:08
it.
Jenna Udenberg 54:08
um, you know, I sometimes irked by words, shocker. And so, um, you know, people will say like, oh, that person's can find to their bed or they're confined to their wheelchair or, or whatever. And it's like, no, I love disability communities come out so strongly in recent times of like our wheels are what give us freedom.
Rich Bennett 54:32
Yes.
Jenna Udenberg 54:33
So also I, you know, I have spokes on my manual chair that I'm sitting in right now. And yet when I'm out on the trail, man is a biking community, one of the most inclusive. Like, I can go through probably almost a whole week living life in this big city, in a rural city. And I don't get anybody looking me in the eyes,
but I go out on that trail, and every single biker from a little kid to the oldest tallest ebike riding dude. me eye contact. Say, hey, say, wow, that's a really cool ride. Or
Rich Bennett 55:17
Give
Jenna Udenberg 55:17
like whatever, right? And it's the most inclusive conversations that we get to have. And I'm not saying if you're a biker, like, you're all that in a bucket of fish, and you never do anything wrong, totally not saying that. But in that space, there's just that mutual understanding and that mutual respect and that ability to greet where if you're an other, for me, when I'm in other community settings, by and large, the majority of people are way up here, and how do they have to look at me? They look.
Rich Bennett 55:49
Yeah, you damn
Jenna Udenberg 55:50
down at me. And whether we know that or not, that impacts
Rich Bennett 55:55
us Yeah,
Jenna Udenberg 55:56
not only me, but it impacts those that are standing taller too. And even if you don't, oops, even if you don't know it.
Rich Bennett 56:03
Yeah.
Jenna Udenberg 56:03
And so then it's so funny when I'm like in the, um, there are people has we talked about earlier. And also, and I have my magic shoes as I call them to make up for my knee and ankle. Um, contractures. So I kind of on built up heels. And so then here I come, striding at 5, 8, and all these people that used to be looking down at me, I know having to look physically up at me, or at least equal to me. And they're like. This
Rich Bennett 56:32
is
Jenna Udenberg 56:33
different. And I'm like, right. So you know, it's all about perspective. And I love that wheelchair companies, especially power chair companies now, are being innovative. And so they have
Rich Bennett 56:46
yes.
Jenna Udenberg 56:46
See me. And so therefore their seat dries up. And I did that with my power chair one day at school. And the way that the kids and more importantly, my colleagues treated me completely different. When I was seated, just another foot and a half in the air, and a match their eyes, complete different way of interacting.
Rich Bennett 57:10
There's a young lady that works at the grocery store here that has a chair like that
Jenna Udenberg 57:16
nice.
Rich Bennett 57:17
And yeah, it makes a, it makes a big difference. And I learned this because I play Santa professionally. the one place you always get kids and wheelchairs.
Jenna Udenberg 57:28
And
Rich Bennett 57:28
Well, the kids can't sit on your lap.
Jenna Udenberg 57:31
Great.
Rich Bennett 57:31
You know, and I learned the hard way. I'll stand up. I don't want to look down out. So I'll squat down. That way, if I'm allowed to give them a hug, I'll give them a hug. If not the fist bumps, but I'm
Jenna Udenberg 57:45
right
Rich Bennett 57:45
face to face.
Jenna Udenberg 57:46
Right.
Rich Bennett 57:47
With them. And it puts a smile on their face.
Jenna Udenberg 57:50
Yep.
Rich Bennett 57:51
They love it, especially when they hear me trying to get back up. And I sound like a ball race. Chris piece.
Jenna Udenberg 57:59
They're like, oh, Santa, Yeah, therapy.
Rich Bennett 58:03
Santa. Santa several hundred years.
But
Jenna Udenberg 58:10
still a kid at heart. So your
Rich Bennett 58:12
Oh yeah,
Jenna Udenberg 58:12
all.
Rich Bennett 58:12
always. Yeah, that's something I did. I have found that when I do Santa, it's amazing, even how many adults still want to sit on
Jenna Udenberg 58:21
lap.
Rich Bennett 58:21
Santa's
Everybody everybody's a kid, no matter
Jenna Udenberg 58:25
Nice.
Rich Bennett 58:25
what. If you're not, then learn how to live
Jenna Udenberg 58:28
life. Great.
Rich Bennett 58:30
Alright, with with the book.
Jenna Udenberg 58:32
Yeah,
Rich Bennett 58:33
and yourself published, right?
Jenna Udenberg 58:34
Yes.
Rich Bennett 58:35
Because I always love to ask authors about some of the challenges. What was the most challenging thing to things? Most challenging thing about writing the book. And then second, what was the most challenging thing after the book was published about getting the book out there?
Jenna Udenberg 58:51
Oh, good questions. The hardest part of the book was reliving a lot of the traumatic spaces. And I was very thankful that I had a good writing coach at the time who just said, right, your story when you have the capacity. So if today is not a deep soul, deep spirit, deep emotional time and bandwidth time don't write about your depression and suicide plans. If today is not a great time to start talking about starting having surgeries at 15 and having a surgery every 6, 9 and 12 months, don't write it. Go write the thing about being old on the trail because that's what gives you joy in that in that day of your writing session.
Rich Bennett 59:38
Right.
Jenna Udenberg 59:39
There will be time, right, there will be time to go back and share those stories if you're led to, you know, share those deep harder times of life. And she was completely right. It made editing later and putting it together. A little bit more of a bear for me as a type A, but yeah, so that was the best advice I was given in the process. But, man, the whole publishing, promoting, editors, all of that world. I mean, there's a reason that not every single person has written a book. Even though I believe that everybody should, like everybody's story is important. Not that it needs to be written down all the time, but in ways that people can access it and learn from your story, I think is important.
And I'm in the process of working on getting my audio book out, because here's this book about,
Rich Bennett 1:00:30
did you read my mind? I was going to ask you,
but
Jenna Udenberg 1:00:34
I'm working on it. It's all fully recorded is with my college buddy who's an audio engineer. So slowly, but
Rich Bennett 1:00:39
good.
Jenna Udenberg 1:00:40
slowly, but steady. We're getting it to be audio, to be more accessible for more folks. And then also, even just learning about that, like now I'm such a critic when it comes to other people's books, because I'm like, I can't read this. I'm 45 and need biflacles, and I'm still being stubborn and not putting them on my face, even though I have them. But I'm like, I can't even read this fond of this. And I'm like, I'm not going to finish the book because I can't read it. So I'm glad that people taught me like to Homa and size 14. Like, it's going to cost you more to make it, but at least people will have a better chance of actually finishing your book if you make
Rich Bennett 1:01:15
Uh-huh.
Jenna Udenberg 1:01:15
it
Rich Bennett 1:01:16
That
Jenna Udenberg 1:01:16
so.
Rich Bennett 1:01:18
page magnifier helps me a lot.
Jenna Udenberg 1:01:21
Right. Even today, like, shout out to all the business folks listening to, but I'm like, if your forms aren't accessible, where I can read it, like, had us in to check to my Abel account, right. And it's not even like five point font of the address to send my check to to get in my abel account. Like, people like, I don't understand.
Rich Bennett 1:01:46
Oh, the part that sucks about that with our lines club, I had a gentleman in the club who's legally blind,
Jenna Udenberg 1:01:54
Okay.
Rich Bennett 1:01:55
and I would always type up the agenda. Now I had my cheaters on as I'm typing it up so it looked to me. And I think I think I did the font it like 12
Jenna Udenberg 1:02:06
Okay.
Rich Bennett 1:02:07
or whatever, but he could he still couldn't read it because he has held it right up. So I had to I think I for him, I adjusted it to 22 and printed it out, which is what I do. Like with the intro I read for you. That's that's a 22 problem because I don't wear my glasses. I'll do it.
Jenna Udenberg 1:02:27
Right. See.
Rich Bennett 1:02:29
Okay.
Jenna Udenberg 1:02:30
For everyone you don't need the diagnosis to make.
Rich Bennett 1:02:35
You're doing an audio for him to because with disabilities and now I'm thinking, where's somebody's blind. They listen to audiobooks. And this is this is perfect.
Jenna Udenberg 1:02:46
Yeah. And even though it was with like physical disabilities, because holding a book for that long.
Rich Bennett 1:02:52
Yeah.
Jenna Udenberg 1:02:53
It gets to be too much. So yeah, there's there's a lot of a lot of need out there for making things in multiple formats.
Rich Bennett 1:03:00
Well, Jenna, I before I get to my last question, which I have no idea what it's going to be. I want to I want to thank you so much. And like I said, talk to some other people. I seriously want to do a roundtable. And I want to see if I can get a hold of the other gentleman that I had on that was.
Yeah. And his name still escapes. I mean, he's from the, I think he lives in New York.
Jenna Udenberg 1:03:24
No, come.
Rich Bennett 1:03:25
Somebody else I found through pod match.
Jenna Udenberg 1:03:28
Oh, okay.
Rich Bennett 1:03:28
Yeah. So I'll define him. But is there anything you would like to add before I get to my last question?
Jenna Udenberg 1:03:36
I always tell my robotics kids to be ready for this question. And here I am. Having to practice what I preach. I would say disability is not a bad word. I would say that I'm not going to talk to them within our community and our culture. And the best way to be an ally is asking curious questions. So get over yourself. Except the fact that you're going to make mistakes in what you say or do. But if you come with a humble heart and having words to express. What your intentions are. That makes all the difference in the world.
Rich Bennett 1:04:11
And those of you listening to things.
Within my spoke is within my spoke is within my spokes. A tapestry of pain, growth and freedom by Jenna Udenberg. When you purchase it, make sure after you read it, make sure you leave a full review on Amazon, Barnes & Knows, Goodreads, wherever you can leave a review, leave 'em on all the places. And I know you're gonna enjoy the book, so purchase it for other people as well. Here's the thought. Purchase it and drop it off at a business that is not ADA compatible.
Jenna Udenberg 1:04:52
Ooh. Good one, I know.
Rich Bennett 1:04:56
And make sure of course you make it donation too, uh, was it above and beyond with U, the letter U, .org, you can make donations there. And there was something else I wanted to add, I forgot what it was, that face. No, and, and, and Jenna mentioned this, you know, talking to somebody at the same level. Don't be, if you see somebody that's in the wheelchair, be afraid to go up and talk to 'em. Get the end of the level, start a conversation, talk to them. 'Cause something Jenna and I didn't really talk about, which, that's why she's gonna have to come on again, was the mental health part, everything she went through, and it, it is a lot on people. Alright, so Jenna, here it is. The question, there's 100 questions here. I'm not gonna ask you all 100.
Jenna Udenberg 1:05:51
don't
Rich Bennett 1:05:51
I have, I have no idea what, what the questions are. The weird thing is some of my guests I've had on, the number they picked somehow or another aligned with what we were talking about. So, pick a number between one and a hundred.
Jenna Udenberg 1:06:06
Looking number 13.
Rich Bennett 1:06:08
Look. [laughing] Y'all, you're the
Jenna Udenberg 1:06:11
first-
Rich Bennett 1:06:11
first,
Jenna Udenberg 1:06:11
[laughing]
Rich Bennett 1:06:12
might be the
You, oh, come on, seriously.
Jenna Udenberg 1:06:18
No. [laughing]
Rich Bennett 1:06:21
Well, that was the lines of what we're talking about.
Jenna Udenberg 1:06:23
Really?
Rich Bennett 1:06:24
Yes. If you could change one thing about the world, what would it be and why?
Jenna Udenberg 1:06:31
Oh!
Only one? Not just getting it.
Rich Bennett 1:06:36
[laughing]
Jenna Udenberg 1:06:40
I think what I would change is that we as humans would see the root of issues instead of just the symptoms.
Rich Bennett 1:06:57
And why is that?
Jenna Udenberg 1:06:59
Because if you change the root of issues, you make it better quicker. If you only treat the symptoms, you're just playing guacamole, and you're not getting to the heart of it. And then, also, you burn out before you ever get a chance of even getting to the root.
Rich Bennett 1:07:17
Oh, I love that. Man, I was...see? That was a great answer. Man,
Jenna Udenberg 1:07:23
[laughing]
Rich Bennett 1:07:23
you should have picked a harder number. [laughing]
Jenna, I want to thank you so much. It's been a true honor and I cannot wait to speak with you again. Thank you.
Jenna Udenberg 1:07:35
Thank you.
Rich Bennett 1:07:37
Thank you for listening to the conversations with Rich Bennett. I hope you enjoyed today's episode and learned something from it as I did. If you'd like to hear more conversations like this, be sure to subscribe to the podcast so you never miss an episode. And if you have a moment, I'd love it if you could leave a review. It helps us reach more listeners and share more incredible stories. Don't forget to connect with us on social media or visit our website at Conversations with RichBent.com for updates, giveaways, and more. Until next time, take care, be kind, and keep the conversations going. You know, it takes a lot to put a podcast together. and And my sponsors help add a lot, but I also have some supporters that actually help me when it comes to the editing software, the hosting, and so forth. There's a lot that goes into putting this together. So I want to thank them. And if you can please, please visit their websites, visit their businesses, support them however you can. So please visit the following. Real-life prosthetics, cutting-edge solutions, restoring ability since 2001. Go to real-life prosthetics.com. Full circle boards, nobody does charcuterie, like full circle boards, visit them at fullcircleboards.com. Sincerely, Sincerely, Sincerely so your photography. Live in the moment, they'll capture it. Visit them at sincerelysoyer.com.

Jenna Udenberg
Author/Founder
Jenna Udenberg is a lifelong resident from the Northshore of Minnesota and is a former music educator of 19 years. She has used a manual wheelchair since the age of 8 due to Juvenile Idiopathic Arthritis. Jenna is a 2017 Blandin Foundation Community Leader, a 2020 Bush Fellow, and a 2025 Shannon Leadership Institute Fellow. Writing for the Lake County Press in her column, Local View from 4 foot 2, inspires vulnerability and the sharing of lived experiences from the seated perspective. Within My Spokes: A Tapestry of Pain, Growth & Freedom is Jenna’s published memoir which you can find on the A&BWU website, on Amazon or wherever you find your books. In her free time, you can find Jenna outdoors on paved trails or fishing with friends, playing board and card games, as well as coaching the Robo Dweebs, a LEGO robotics team. Jenna is the founder of the non-profit, Above & Beyond With U, which works to increase accessibility and inclusion in Minnesota and beyond.