Carrie's Always Talking
The podcast all about stories and connection. Every other week there will be stories from people just like you, or perhaps it will be YOU! Stories are a part of the foundation of life, and they are one of the main ways we learn about one another. Hearing someone share their experience can be healing not only for the person sharing but also for those listening. You might laugh, you might cry, but you also might also learn that we're more alike than you think.
Carrie's Always Talking
Breaking Barriers: Disability Advocacy with Jenna Udenberg
In this episode of Carrie's Always Talking, Carrie interviews Jenna Udenberg, a disability advocate and author, who shares her personal journey with juvenile arthritis and the challenges she faced growing up. Jenna discusses her experiences with self-advocacy, the importance of creating inclusive spaces, and her nonprofit organization, Above and Beyond with U, which aims to enhance accessibility for all. She also reflects on her memoir, 'Within My Spokes,' and the power of storytelling in fostering empathy and connection among individuals. Jenna emphasizes the need for authentic relationships and the importance of understanding the unique experiences of those with disabilities.
Jenna's Website: https://www.aboveandbeyondwithu.org/
If you have a story you'd like to tell, send me an email at carrie.always.talking@gmail.com. I'd love to hear from you.
You can also find me on Bluesky- @carrie-is-talking.bsky.social
www.youtube.com/@carrie-always-talking
Carrie McNulty (00:00)
It's Carrie's Always Talking. I'm your host, Carrie McNulty. This is the podcast all about stories and connections. I believe that when people share their stories with one another, it's the main way that we build empathy and humanity, which is something I think we need a lot more of in the world today. This is episode 18 of season two. I'm going to have this episode and on my next episode, and that's going to be the end of this season. And I'm going to take a little break and I'll be back a little further into the winter with season three.
Today I have a guest, her name is Jenna Udenberg, and she's a thought provoking author, disability advocate, and accessibility educator. She was diagnosed with juvenile arthritis at just seven years old, and Jenna has faced life's challenges with incredible resilience and determination. As a 2020 Bush Fellow, she uses her voice to create more inclusive and accessible spaces for everyone.
Her book, Within My Spokes, shares heartfelt stories of perseverance, healing, and the relationships that shape her journey. Jenna's work through her nonprofit Above and Beyond with U is transforming lives by championing inclusion, breaking barriers, and so much more. I think you'll really enjoy hearing from Jenna. I learned so much, and I believe you will too. As always, thank you for listening to the podcast. If you're new or if you've been following along, I appreciate you.
And if you want to tell one of your stories, go ahead and send me an email. I'd love to hear from you. As always, I'm going to ask that if you are able and willing to donate to your local food banks, especially around this time of year and the holidays, food insecurity is a real thing. And I don't think anybody should go without if possible. All right. So let's go ahead and dive in to Jenna's incredible story and I'll talk to you in a little bit.
Carrie McNulty (02:05)
Hi Jenna, thank you so much for coming on the show.
Jenna Udenberg (02:07)
Hey Carrie, thanks for having me.
Carrie McNulty (02:09)
Absolutely. I'm hoping that today you could share whatever pieces of your story that you feel comfortable sharing with the audience. And then also I want to talk, of course, a lot about your disability advocacy that you do and the book you've written and kind of all your stuff. Are you ready to talk about all your stuff?
Jenna Udenberg (02:25)
Sure, bring it on. I'm an open book, literally and figuratively.
Carrie McNulty (02:31)
Yeah, so start us out. Tell us your story.
Jenna Udenberg (02:36)
Yeah, so I grew up in rural Minnesota on beautiful Lake Superior. And, you know, in a small rural town, most typical tomboy, doing all the things, hunting, fishing with my older brother and my dad and my grandpa and an older neighbor and just, you know, living life, had a black lab, called it Blacky because I was so original. You know, it is what it is. Tried to ride it. It did not want to be a horse. It was fine.
Carrie McNulty (02:54)
Mmm.
Right.
Mm.
Jenna Udenberg (03:03)
The family story goes that we went on a local like flooded pond in the middle of winter and that night with family I fell on my knee and so the next morning I was only a little first grader, so seven almost eight years old, and ⁓ was getting ready for school the next day in a nice little bubble bath playing screwing around I'm sure and my right knee floated to the top through the bubbles. It was two to three times the size of my other knee.
So like any little first grader, I'd scream for my mommy because mommies make everything better, right? They try, right? And so we went to the local clinic and the doctor that was actually my birth and delivery doctor saw me and he was like, I think you have water on the knee. So we're gonna like give you a ace bandage and if it doesn't get better in a week, we're gonna shove a ginormous needle into this little knee.
Carrie McNulty (03:37)
Or they try, yeah.
⁓
Jenna Udenberg (03:57)
And my dad used to volunteer many years before that on our ambulance. And so he's like, my daughter is not a professional athlete nor a high school athlete. She's seven. This doesn't feel right. So thankfully, our small town had a second clinic of just one GP. So we went and saw him and he's like, I'm pretty sure you have arthritis looking at some blood work and looking at, you know, an x-ray, but I can't officially diagnose you. You need to go to the next big city, which is about
26 miles away and see a rheumatologist. And so I did that. And he saw me and he's like, I think you have juvenile rheumatoid arthritis. However, Lyme's disease, the tick-borne illness was coming on the scene at the same time and the initial onset and symptoms were very similar. So they sent me down to Rochester at the Mayo Clinic and I had to go through all the same tests plus a whole battery of other stuff, which as a first grader was like,
Carrie McNulty (04:40)
Mm-hmm.
Jenna Udenberg (04:52)
big and scary and having to sit in a wheelchair and do barium drink or x-rays and yeah, yeah. My dad had to get in the face of a few radiologist texts because they're like, you're putting us behind and I'm like, I'm a texture person. So that's when I learned like, my tongue has a lot of power over my life.
Carrie McNulty (04:54)
yeah.
Sorry. ⁓
Mm.
You
Jenna Udenberg (05:11)
because then, you know, and it was interesting, right, because it was a melting pot of so many different specialists and doctors from all over the world. So number one, they're using ginormous words and medical words. And then number two, thick accents, can still hear the Scottish accent of of one of the doctors even, you know, 38 years later. And another one that isn't as profound to me in memory, but
Carrie McNulty (05:27)
Mm-hmm.
Jenna Udenberg (05:38)
Then I thought, this is awesome. Now we're like in this like, you know, there's like oak and cherry wood shelves everywhere and leather couches. And I was like, this guy's going to be awesome. Plus, he started the appointment with here, have a lollipop. And so then he gave like the diagnosis and then, you know, mom started crying, dad teared up all the things. was like, ⁓ this is like a pretend lollipop. This is is not right. And so they like go away for lunch. And long story short,
I saw my mom crushing medicine between two spoons. And she was like mixing it in my mashed potatoes. And I'm like, I am going to puke. And she's like, you will not. And I'm like, yes, I will. And sure enough, and this was like, there was carpet on the floor. There was a major D like I as a seven year old, had no idea. I'm like, why is this guy in this fancy suit and all the things, right? Like we're country bumpkins in this space. And so sure enough, that's when I again found out that my tongue is a
Carrie McNulty (06:19)
⁓
Mm-hmm.
Jenna Udenberg (06:34)
texture finder. And yeah, so that was just like the beginning of it, right. And so there's so many more stories within my book within my spokes, but that was the initial onset. And within a year, I was in a wheelchair. So by like eight and a half, nine years old, I was in a wheelchair. And at second grade, I missed more days of school than I attended. So that was
Carrie McNulty (06:41)
Mm.
Mmm.
Jenna Udenberg (06:58)
That was rough. I'll remember about second grade with smelly stickers, scratch and sniff. Good, good stuff. So, and that's kind of how I categorized my elementary and like middle school years. Was, was it a good arthritic year or was it a bad arthritic year? And I never followed the prescription of what the doctor's books said. So it was like, if we should do A plus B equals C and Jenna feels better.
Carrie McNulty (07:09)
Hmm.
Jenna Udenberg (07:22)
they would try that to me and I'd be like Q to the square root of R to the cube of S like it they just couldn't figure it out. So back in 2018, I think it was I self referred myself to Mayo Clinic again, because I was like, I am now in my late 30s, like, let's figure this stuff out. And I'm also, you know, have scoliosis and osteoporosis and type two diabetes and just, you know, just this onslaught of of life that I, you know,
Carrie McNulty (07:47)
Mm-hmm.
Jenna Udenberg (07:50)
I always say I'm the Isosinosis person because there's just a lot. anyway, so when I was talking to their rheumatologist, and he's like, so by the way, we don't call it juvenile rheumatoid arthritis anymore because it doesn't follow the rheumatoid pattern of the disease. And I'm like, shocker, I could have told you that. But I was only, you know, a young girl who's from the rural city. But
Carrie McNulty (08:08)
Hmm.
Jenna Udenberg (08:16)
And then a few years ago, somebody is like, you know, we could get rid of juvenile for you. And I'm like, no, no, no, no, no, I want them to realize that this has been a long term decades of a medical condition. And they still like just couldn't get over it. But I still wanted the juvenile title there. And I'm like, you either are new to the medical world or you just are ableist and don't really
Carrie McNulty (08:29)
Mm-hmm.
Jenna Udenberg (08:42)
understand why someone would want someone to know that about them, especially in the medical world.
Carrie McNulty (08:48)
Absolutely. Well, right, because
if it's mislabeled, they aren't going to take into account that your symptoms have been different and the onset of it and everything that happened was different all the way down the line, right? So I totally get wanting that to be like, no, this is part of my story and this is when it started. So we're going to call it what it was called at that time and go from there. Yeah.
Jenna Udenberg (09:00)
Right. Right.
Right.
Right,
and I don't mind that they took the rheumatoid out of it. You know, you can put idiopathic there or you can just have juvenile arthritis. Like that doesn't bother me, but it's like once you see the elbow replacement scar, if you're an emergency person that might lead you to go, well, that's interesting. And she's in a wheelchair. We should probably check other joints for scars before we move her or do X, Y, Z, you know, where.
Carrie McNulty (09:13)
Mm-hmm. Mm-hmm. Mm-hmm. Yeah.
Yeah.
Yeah.
Jenna Udenberg (09:35)
And I think you can still be like in your 20s, even early 30s, for them to consider it juvenile. So again, I wouldn't want them thinking like, oh, she's 45. Oh, she must have got it when she was 40. Whoa, that disease did that in five years? Like, no, let's not.
Carrie McNulty (09:41)
Yeah.
Yeah, right.
From what you know about it, was your trajectory from being diagnosed and then ending up a year later in your wheelchair, was that what is typical for that diagnosis or no? Or is it just different for every person?
Jenna Udenberg (10:09)
It's different for every person, but I would say from what I understand from my rheumatologists and the shock and different looks on different people as they meet me in the medical world, they're like, wow, that was aggressive. Wow, that was fast. And so, you know, in a lot of it, you know, like my rheumatologist just retired like six to eight years ago.
Carrie McNulty (10:17)
Mm-hmm.
Mm.
Jenna Udenberg (10:31)
And, you know, he's like, you really put me through my paces, but you also helped me learn from being this fresh punk out of med school. He didn't call himself a punk. I call him a punk. And if he listens to this, hi, Dr. Leff. But, you know, and it was just so reassuring of, like, you know, we did. We grew up together and I had to find my voice very early on. And you don't know what you don't know, right? And so...
Carrie McNulty (10:37)
Hmm.
Mm-hmm.
Jenna Udenberg (10:59)
Um, but there was a point when I was like, I'm tired of feeling like a lab rat. I'm tired of being that anomaly. And even when I went to Mayo Clinic in 2018 for that rheumatologist, I was kind of putting him through his faces. And I'm like, so how many artificial joints is the highest number you've ever seen a patient with? And he's like, uh, four. And I'm like, next doctor, because I have six, you know, like, I need you to understand more of where I'm
Carrie McNulty (11:04)
Mm-hmm.
Thank you.
Jenna Udenberg (11:28)
coming from, but then he told me like this huge history and he actually researched one of the medications I'm currently on. And so was like, oh, well, if you know all about this from Australia to Europe to America, okay, I guess I guess I'll let you see me. Right. Well, we'll continue the conversation. Right. And so, yeah, so then once I kind of got my own agency of
Carrie McNulty (11:44)
give you a try. All right. Yeah, we'll see how this goes.
Jenna Udenberg (11:55)
about myself and that's one thing I always think my parents for is, you know, when I was 15, they're just like, this is your life. This is going to be your long haul. And one of my first physical therapists in our rural clinic had said, you know, you're going to have well-intentioned people coming after your daughter thinking they're going to help her. And they might think they really are in the short term, but once she starts having surgeries, she'll never stop.
Carrie McNulty (12:15)
Mm.
Mmm.
Jenna Udenberg (12:23)
So
if you start that when she's nine, the whole rest of her life, she'll be in reconstructive surgeries just because joints give out, because growth plants aren't fully formed, all the things. And so I was able to make it until I was 15 before I had my first joint replacement. And ⁓ I've been very blessed with just an amazing medical team and especially a surgical teams and physical and occupational therapists. And now that I haven't...
run across some doozies and some folks that I had to educate and give the eviction notice to. But by and large, you know, they're just like a whole other family. So when some of my providers have retired, it's kind of like, the mom and dads of my life are, have moved on. So it's just, it's just different, right? And all of, all of our stories form who we are. And so I learned how to have relationships with adults.
Carrie McNulty (13:03)
Yeah.
Jenna Udenberg (13:16)
very early on. I'm the baby of a lot. So my brother is 16 years older and my two sisters are 15 and 12 years older. So I'm kind of like I am the baby and yet I'm also kind of like an only child in the same respect plus them being the only disabled child later in life and all the things. So yeah, so you know, it is what it is good, bad. Otherwise, I'm very thankful for I am.
Carrie McNulty (13:24)
wow.
Yeah!
Mm-hmm.
Mm-hmm.
Jenna Udenberg (13:41)
But anyways, I was going back, I was very thankful to my parents who just said, this has to be your life and this has to be your decision. And so they put me out and they thought they were just gonna, you know, do an arthroscopy, just kind of play around in my knee and clean things up and do all the things. And they got me knocked out and I woke up and I was like, wow, that's what surgery is like. This is awesome. I get popsicles. I can talk normal. Like, I was like, something feels fishy. And the surgeon came in and he's like,
So we just got through the scans. We didn't even like open you up. We like did absolutely nothing. We just took more. I think they, you know, at my age, they're just like, we just took more in depth x-rays. That's I think what they told me. And they're like, you know how you went home one day and you told your mom it was a miracle because you could move your knees and you didn't have pain. And I'm like, yeah, I can move them. Look, not a lot, obviously, but a little bit. And the one surgeon, he was like,
you created hairline fractures in your femurs and you were treating that as if that was your knee.
Carrie McNulty (14:44)
wow.
Jenna Udenberg (14:48)
And he's like, your pain tolerance has to be through the roof. And so he was typically, you know, he was the head of orthopedic surgery and all the things. And so he was typically that lower, lower voice. But then when he'd like get students in or other doctors coming in, he'd be like, his voice would go like two octaves higher. And he'd be like, you have to meet this patient. And Jenna, do you mind if I share your story? Sure.
⁓ do do do, you know, she had hairline fractures and she made new joints and all the things. But, you know, I mean, there was just so much life jammed in the beginning of my world that you just don't know any different. And so I always say that I'm very thankful that I was disabled as a child. And most people just can't fathom that sentence and they think it's a lie.
Carrie McNulty (15:15)
Ha
Mm-hmm.
Mm-hmm.
Jenna Udenberg (15:35)
And it's like, I don't know any different though, right? Like I remember walking, I remember jumping, I remember doing all the things in swimming pools and going fishing. Like I remember those things. And yet it stink for many, many years that I wasn't able to do that because of pain or because of lack of access or because of all the amazing cool devices that are out there now. Absolutely, right? Like
Carrie McNulty (15:58)
Mm-hmm.
Jenna Udenberg (16:00)
And it's shocking to me because I'm like, whoa, I was disabled two years before the Americans with Disabilities Act even came into law. Like, I'm old. But in the same respect, it's like that makes way more sense of why my story is the way my story is. And when I was 12, a physical therapist connected me with my now bestie, and she was actually diagnosed with JRA when she was two. And so she probably hadn't since birth, but they just figured it out once she had turned two.
And she also uses a manual wheelchair, primarily and all the things. And so she's actually the president of my nonprofit. And so we're just, you know, just living life and taking names and doing all the stuff because, you know, what else are you going to do? Right? You can make lemonade. And, you know, a lot of times I don't use that in an ableist way. Sometimes I'm like, you know what, sometimes you take those lemons and you chuck them back at whoever tried to give them to you because you can only handle so much lemonade making too. So, you know.
Carrie McNulty (16:37)
Haha
Right.
Right, right.
Jenna Udenberg (16:55)
You just gotta be real.
Carrie McNulty (16:57)
did you still get to fish? Did you still get to do the things that you wanted to do as a kid with family? How were they with you? It sounds like they gave you a lot of autonomy, which is awesome. But were they also sort of like, hey, if you still wanna do these things, we're gonna figure out a way for you to do them. You could still have these experiences.
Jenna Udenberg (17:07)
Right.
say yes, but in a very more limited way than current society, just because there wasn't all the adaptive chairs and there wasn't adaptive lifts and all that. So if my dad or brother or family member could pick me up and lift me and put me in different places, for sure. And so I'm so thankful for folks that are coming behind me, because there have been so many
Carrie McNulty (17:14)
Mm-hmm.
you
Yeah.
Yeah.
Mm-hmm.
Yeah.
Jenna Udenberg (17:39)
advancements with technology in the medical world and just in the society of disability, community and culture. It's such a vast, beautiful tapestry and so diverse because anybody can enter our community and culture at any moment for a ⁓ host of reasons, right? And so it's so amazing. And when one in four Americans identify as being disabled,
Carrie McNulty (17:40)
Mm-hmm.
Anytime, any moment. Yep.
Jenna Udenberg (18:03)
there, you know there's more, right? Because there's such still a negative stigma that folks aren't gonna say, ⁓ pick me, here's my, here's my fun label, you know, and I'm looking forward to the day when we just, we don't care, right? Like, so, okay, so you walk this way, or you don't walk, or you eat this way, or you read this way, or you don't read because you don't see, but this is how you read in the world, or this is how you communicate, or this is how you swallow, or we all go to the bathroom, but
Carrie McNulty (18:05)
yes.
Right, right.
Yes.
Jenna Udenberg (18:31)
It might look different, feel different, smell different, look different, right? Like, like we just have to get over ourselves.
Carrie McNulty (18:34)
Right, right.
yeah,
I definitely agree. And I feel like I don't want to make this political in any way, but I feel like the climate that we're in feels in some ways like steps backwards from all of the good momentum that we've had. So I'm hoping that that isn't what's happening for too long in our society before we can get back to the place where we're moving in the right direction. And that's one of the reasons why I was happy that you
were willing to come on and talk to me because I think your story is important, especially right now.
Jenna Udenberg (19:09)
Absolutely. Like, I just, I can't imagine growing up when I did without the Americans with Disabilities Act, without Section 504, without IDEA. Like, there are so many things that are set up. And yes, are there still issues in all of those things? Absolutely, because we're humans and we're flawed and, and law can't keep up with the medical advancements and technology.
Carrie McNulty (19:16)
Mm-hmm.
Yes.
Mm-hmm.
Mm.
Jenna Udenberg (19:36)
right? Like, we're always
Carrie McNulty (19:37)
Yeah.
Jenna Udenberg (19:37)
going to be playing catch up in that regard. But we don't throw the baby out with the bathwater. And all of our lives matter. So all these people that are currently in power and making decisions, whether it's true follower, title power, elected power, whatever power, at some point, their lives are going to be impacted by disability. And not that I'm saying I'm wishing that on them. Right.
Carrie McNulty (19:49)
Mm. Right.
No, but that's just the fact. We all, some
point, are very likely. Very likely. And towards the end of our lives, we all will be. So unless an accident happens that it's or a thunderclap, more than likely, you're going to experience the world in a different way. And wouldn't it be nice that that world is inclusive for everybody to participate and to have what they need? Yeah.
Jenna Udenberg (20:08)
Mm-hmm.
Good experience.
Mm-hmm.
And everybody
no matter all of your other ways of how you come into this world, right? Not just those that are the upper echelon that can pay for someone to lift their child, their spouse themselves. Not just the people that can be like, I'll just put an elevator in this historic building because I've got $5 million I can just throw at XYZ, you know, like, it has to be there for everyone or not at all. And that's
Carrie McNulty (20:33)
Yeah. Yeah.
Yes.
Yeah.
Yeah.
Jenna Udenberg (20:56)
Yeah, so it is rough, but I just I just still cling to hope. Number one, I don't watch the news right now. But number two, it's like, all right, I just cling onto the hope like again, because we are the largest minority group in the world. And I think that's part of it, right? Because there's power there. And if we all unite, there's power. So yeah.
Carrie McNulty (20:56)
Yes.
Mm-hmm. Good idea.
Mm-hmm. Mm-hmm.
Yeah.
Yes, definitely. I
agree. Tell me a little bit about your nonprofit.
Jenna Udenberg (21:24)
Yeah, so Above and Beyond with You is in its third year. It came out of my 2020 Bush Fellowship and a Bush Fellowship is impacted in Minnesota, North Dakota, South Dakota, and the 23 tribal nations in those geographic areas. And so it's a two year process and you can either choose to like get your master's or doctorate or bachelor's or whatever. Or you can self design how you need to change as a
Carrie McNulty (21:38)
Mm-hmm.
Jenna Udenberg (21:52)
be more transformative as a leader. And so I chose the second way because I had just gotten out of my masters and I'm like, I'm not going back. And now in hindsight, now that I've like hung out more in disability community and culture, it's like, ⁓ man, had I known that there was like a doctorate in disability studies, I probably would have done that. Had I known there was all these certifications within the Americans with Disabilities Act and code and all the things.
Carrie McNulty (21:57)
Yeah. I don't want to do that again. ⁓
Mm-hmm.
Mm.
Mm.
Jenna Udenberg (22:22)
I might have chosen differently, but you know, it is what it is. And so anyhoo, it's with the nonprofit Above and Beyond with you. So Above and Beyond stands for the fact that you can go above and beyond the code of ADA. And in fact, you should because the ADA is just the floor and it's not the ceiling. But you also need to involve disability culture and community in all those things, because there's nothing worse than well-intentioned people.
Carrie McNulty (22:24)
Yeah.
Yes.
Jenna Udenberg (22:51)
especially those that are like local small business that are spending their last five cents in this investment. And then they're like, Hey, come check out our already built business or already re renovated bathroom. And then I have to come in and be like,
Carrie McNulty (22:59)
Hmm.
Jenna Udenberg (23:11)
this part is amazing and awesome. And then you just put that paper towel dispenser or that soap dispenser. And now you just doubled your cost because you didn't involve us and you didn't use universal design. And again, we don't know what we don't know. So we're learning a lot on my board of nine folks and we're all connected to education in some way, or form, which is so awesome. And it makes us unique and different.
Carrie McNulty (23:21)
Yeah.
Mm-hmm.
Jenna Udenberg (23:35)
we're trying to figure out those inroads, right? Because in our last three years of doing this work more consistently and more passionately, I will say, it's just such a learning curve. And sometimes it's like, that last worker on Friday of a big contract, who's a subcontractor, who just got out of school, is the one who decided
Carrie McNulty (23:44)
Mm-hmm.
Jenna Udenberg (24:02)
where that soap dispenser was gonna go. And now we're all stuck with it. So it's figuring out somewhere in that cycle when you go from the architectural drawings to the contractors to the subcontractors to even like in other spaces, especially the medical world, like, you're a volunteer, Gary, go put up this pamphlet holder. ⁓ and you just blocked access to the power button that opens the door. But we don't know that until we already get in there and the door is locked and then we're like, shoot.
Carrie McNulty (24:02)
Mm.
Yeah.
Right.
⁓
Jenna Udenberg (24:30)
I can't get out, you know.
Carrie McNulty (24:30)
yeah. Yeah.
Jenna Udenberg (24:33)
So that's what we're trying to figure out. The with you stands for with. We don't believe in just doing like a one and done kind of training. It's a relationship. I'm a very relational person and it's about, you know, nothing for us without us, which is a big saying within disability culture. And again, we don't know what we don't know, right? I'm always learning something new.
Carrie McNulty (24:41)
Hmm.
Jenna Udenberg (24:54)
in accessibility. I'm always learning something new about universal design. I'm always learning something new about other people's physical needs. And the U is a nod to my last name as our previous conversation, because little, little kindergartners could not say Udenberg. And if they could, they could not spit it out fast enough before I was already down the hallway. So, so the U is a nod to my last name, but it's also just a nod of that we are with you throughout the whole journey of becoming accessible and inclusive.
Carrie McNulty (25:05)
Yeah.
⁓
Yeah.
Jenna Udenberg (25:22)
And to realize that you're never going to be fully that, it's always a journey. It's always continuing to do better and try to know better.
Carrie McNulty (25:30)
Mm-hmm.
Yeah, to keep evolving. Yeah. I love that it's a kind of a partnership you make with businesses for the long term. Yeah. I think that sounds fantastic. And yeah, think you're obviously you're very right that people shouldn't be making rules and changes and modifications for.
Jenna Udenberg (25:34)
Mm-hmm.
Carrie McNulty (25:55)
the individuals who actually experience life that way without including them. It seems like common sense, but I'm betting it happens quite often.
Jenna Udenberg (26:01)
lot.
And I remember before having the nonprofit to, you know, and in spaces that were near and dear to my heart. And I'm like, I'm right here. I won't charge you. Like, I just I want to be a part of whatever. And another leader came up to me like, you know, by the way, we're never gonna ask your opinion because you're gonna make it just for you. I was like, do you do you do you know? Do you know me? Do you know my heart and spirit about all these things? And like,
Carrie McNulty (26:12)
Yeah.
What?
Jenna Udenberg (26:29)
Yeah, we're all gonna miss something because we're human, but we're gonna do the best that we can and I think also what again, what sets us apart is again, that education piece, like I can put myself potentially in what it feels like to be in a power chair because I've also used a power chair, I can put myself in the position of using a walker because I've also used a walker. I'm smart enough to know to get a hold of my buddy Max to be like, Hey, Max, I've never been blind before.
Carrie McNulty (26:51)
Yes.
Jenna Udenberg (26:57)
I'm in this space, what do you think? and by the way, Max, I need to compensate you for your time. Because it's not just come and share Jenna's story. It's not just come and share my knowledge for free, because that's what we should do to make the world a better place. Like, you don't ask people making six figures to just come and volunteer, right? Like, and it's not about the six figures, don't get me wrong, but it's like,
Carrie McNulty (27:07)
Mm-hmm.
yes.
Jenna Udenberg (27:23)
you're gonna pay the experts what an expert is due. So don't disqualify our lived experience, our knowledge, and all the things that we bring to the table. Great.
Carrie McNulty (27:31)
And your expertise. Absolutely. Yes, yes. I
think it's very different in a lot of ways, but being a social worker, there's a lot of expectation on us as well that a lot should be offered just because, right? Out of the kindness of our hearts. And many of us are very kind, but you know, also. Yes, right. Right, right.
Jenna Udenberg (27:47)
Right.
Right. We still have to eat. We still have to a roof over our head. We still need to pay for all the books behind us, even though these are fake. But,
know.
Carrie McNulty (28:01)
Hey, you still have to buy those fake books. you know. Can you tell us why is it important to make sure that we're going above and beyond just the basic ADA code?
Jenna Udenberg (28:03)
Right! They're hiding throughout my whole apartment, don't worry. But these ones, they're fake. So, yeah.
Yeah.
So the code was written. ⁓
to get people into spaces that have public funding at the very basic level, right? And like I said earlier, life has changed so much and the opportunities have changed so much. So like a prime example is a local agency and they're like, hey, but we've got, we have a ramp to get to this meeting area. Like, ooh, awesome.
Carrie McNulty (28:34)
Mm-hmm.
Jenna Udenberg (28:54)
but I can't get in the door by myself. So then it was like five years later, because you know, it's an agency. They have lots of red tape to go through. Hey, we have a button now. Awesome. I'll be at your next meeting.
Carrie McNulty (28:59)
Right.
Jenna Udenberg (29:09)
Okay, I'm here, but now what do I do? You don't have accessible tables. I'm stuck in the doorway. So I had to let everybody else go in and find their spot and then plug the door. And then I was like, oh, I'll get a drink of water. No, I won't. Cause you don't have an accessible water fountain. Oh, maybe I need to use the rest. Nope. Cause I can't. So then I just had to ask the very ballsy question of like,
Carrie McNulty (29:21)
Hmm.
Hmm.
Yeah.
Jenna Udenberg (29:38)
So you got me in here, but now what? What can I actually do that all the rest of you can do, right? ⁓ And so it's just mind bending. And like even, I think it was two weeks ago, I was in another local town and they just built this beautiful building in 2024.
Carrie McNulty (29:40)
Ha ha ha!
Yeah.
Jenna Udenberg (29:57)
So as I'm wheeling up the ramp, I see the cornerstone. I'm like, oh, 2024. And I get up to the top of the ramp and I'm wheeling backwards up the ramp because use big muscles, not small muscles. And I see the sticker on the door and I'm like, oh, there's a power button. It should be right. Should be right. Let me turn her. Oh, stairs. Stairs are right behind me. I could have fallen completely down three stairs on cement and then went.
Carrie McNulty (30:11)
Mm.
Oof.
Jenna Udenberg (30:22)
the power button is here because you know those people walking up these three stairs need to hit that power button easily.
So even in 2024, even in 2025, we're just not making logical sense. So even with the ADA, I'm pretty sure of this factor statement, but you can check me on it, is that it truly takes an act of Congress to update these laws and codes. And so the other part is there's no ADA police, right? Like there's no fire chief of accessibility codes.
Carrie McNulty (30:50)
Mm-hmm.
Mm-hmm.
Jenna Udenberg (31:00)
So the only way that we can make a change is by creating lawsuits. Well, they take time, they take a lot of money. And in our current administration and current society, that ain't gonna happen. And so it's just so frustrating. And so that's why we at Above and Beyond with you just wanna come alongside everyone. We wanna come alongside and figure out how to fill those financial gaps to make accessibility happen.
Carrie McNulty (31:14)
Yeah, no.
Jenna Udenberg (31:28)
We want to break down those stigmas that you are leaving money on the table as a business person by A, not hiring disabled employees, B, by not promoting the accessibility that you have. Cause I heard that all the time and granted 80s, 90s, good old boys networks, all the things, right? we did this event for Jenna and Jenna didn't come. Well, I got sick. You shouldn't have built it for Jenna. You should just make it.
Carrie McNulty (31:49)
Mm-hmm.
Jenna Udenberg (31:56)
open for everybody and tell everybody. ⁓ Or, you know, we built it and they didn't come. Well, did you tell us? Probably not. And did you tell us in accessible ways? Like, is your website accessible? Are your posters accessible? Do you have things in large print? You know, just just all the things so it's like, I never thought about that. I was like,
Carrie McNulty (31:58)
Yes. Yes.
Yeah.
Okay.
Jenna Udenberg (32:21)
Right, I probably didn't either when I was teaching music for those 19 years. I learned a lot, but now that we know, now let's do that, or let's find people that are experts to do those things. So we're just all learning and we can all do better.
Carrie McNulty (32:37)
it sounds like you've created the nonprofit for pretty much just that reason, to offer what you have. places and businesses can do a better job of making everything accessible to everybody who might want to partake in whatever somebody has to offer. But yeah, why weren't you there? Because I didn't know. I'm not psychic. Yeah. ⁓
Jenna Udenberg (32:44)
Mm-hmm.
Right?
Right. Yeah, I don't have this bat signal. look, ooh, my wheels feel a ramp coming
on. There's a new ramp in the world. Let's go find it. Now that'd be cool if one of the wheelchair places made it. yeah, no, not yet. And I'm going to coin that million dollar idea if somebody thinks that from your your viewership. Like, get a hold of me. We can be millionaires together. Let's do that.
Carrie McNulty (33:06)
You
Yeah, that would really be cool. Yeah, that would be amazing. But yeah, we're not there yet. Yeah, that's not, we have evolved to that. ⁓
Right. Yes. That's Jenna's
idea. We definitely did give her credit for that, but yes.
Jenna Udenberg (33:30)
So, and the other side of it too, to be honest is we're not there yet, but my goal, like our five-year goal, 10-year goal, whatever it is, especially in current situations, is that, you know, the ADA is the largest unfunded American mandate ever put into law. So I feel bad for these mom and pop places. And again, there's just no funds for them.
Carrie McNulty (33:33)
Mm-hmm.
Mm-hmm.
Jenna Udenberg (33:53)
So my hope was as a nonprofit, we can be that middle ground, like we can help fund, we can help offset and then also work with them to be like, all right, so now where's your new and improved business model? Because accessibility and inclusion should be a part of that budget. And like I kind of hinted at earlier, like there's so much money left on the table because I believe it's like
Carrie McNulty (34:08)
Yeah.
Jenna Udenberg (34:19)
32 or $42 billion a year that the disability community alone spends on leisure and vacation and lodging in that whole industry. And so often we are so overlooked and it doesn't make any sense. And there's not a lot of code like for bed heights and all that stuff. Like there's code for toilet heights, but not for beds. And again, to take an act of Congress, well, currently, not doing their thing. So...
Carrie McNulty (34:25)
Mmm.
Mm-hmm.
Yeah.
Jenna Udenberg (34:48)
Right. And so again, you
know, like the travel industry is just like huge. And so there's some media or social media content creators that I totally follow of Curb Free with Corey Lee and Spin the Globe with Sylvia because they're finally calling things out and they don't call them out in a bad way. Like that's not our purpose either. Again, we just want to celebrate those that are doing it.
Carrie McNulty (35:07)
Yeah.
Jenna Udenberg (35:10)
and highlight their stories much like you do on your podcast, right? Like let's highlight the stories. Let's figure out how did they make it work in their budget? How did they get grants? How did they do all these things? So we can replicate that so we can all go and we're probably one of the most loyal demographics because it spreads like wildfire of like, wow, I really felt seen and heard in this restaurant because they had.
Carrie McNulty (35:13)
Mm-hmm.
yeah!
Jenna Udenberg (35:35)
low seats, they had high seats, they had cushy seats, they had booster seats, they had, you know, like all the things and all their staff was trained. I wasn't this eyesore. I wasn't this thing being bumped into every two seconds, you know, like there's just so much economic drive that people don't see because they believe that we're all at poverty level or below, which much of our population is and that needs to change as well. But
Carrie McNulty (35:41)
Mm-hmm.
Mm-hmm.
Jenna Udenberg (36:01)
I'm still excited to see the baby boomers or older Americans come through because it's so funny. They're like, I've been disabled for two months. I'm mad as heck and I'm not going to take it anymore.
Carrie McNulty (36:12)
Two months, you say?
Jenna Udenberg (36:13)
Right, hold my water
and go fight the fight, right? Like, welcome aboard, but join the movements that are currently going on and embrace your whole community in which you are now finding yourself in, in a natural and sometimes, you know, ⁓ other processes.
Carrie McNulty (36:17)
Yeah, yeah, yeah, yeah.
Yeah, that's funny that it's
just a couple minutes and you know, being disabled and all of a sudden they're like, wait a second, this isn't right. And you're like, yes, yes, it isn't. I'm glad that you welcome aboard. Yes, it isn't right. Oh, yeah. Tell me, when did you write your memoir and what was that process like for you? I've talked to some people who have.
Jenna Udenberg (36:41)
Right.
Carrie McNulty (36:56)
written their stories and it's been very cathartic and for some folks it's taken a long time. You know, they kind of learned things about themselves they didn't realize as they were writing. What was your experience like?
Jenna Udenberg (37:07)
Yeah, great question. So I've been told since a young age that I should always write a book. And more so it's about the funny, weird stuff that happens in the medical world. Where my family's like, do not write a book. I'm like, sorry, here it is.
Carrie McNulty (37:22)
It's my story, I'm gonna write it. Yeah, yeah, yeah.
Jenna Udenberg (37:24)
Right.
So this also happened during my Bush fellowship. My school district came back and said that they were no longer interested in accommodating my work from home order during the pandemic. And so I kind of had the, you know, identity crisis of, ooh, but I've always been a music educator. I am Miss U after all, right? Like, I...
Carrie McNulty (37:34)
Mmm. Mm-hmm.
Yeah.
Jenna Udenberg (37:45)
I don't know. And I didn't get any final concerts. I didn't get any final programs. I didn't get to say goodbye to my kids. Some of my kids thought I died of COVID. So trying to figure out how to navigate that whole like, how does this work? Right. So I was very thankful that my fellowship because I found like a self publishing school of like how to be a better writer, how to learn this and there is a lot in the publishing world that I just had no idea. Like, right.
Carrie McNulty (37:51)
aww
Mm-hmm.
Jenna Udenberg (38:12)
Like you just go right in a wood with, you know, in the woods in a cabin with a fireplace and a lake and deer walking by and hopefully not a skunk, right? And you just make this beautiful book and it just appears at Barnes and Noble or on Amazon. No. I learned more than I wanted to. And so the book is called Within My Spokes, A Tapestry of Pain, Growth and Freedom.
Carrie McNulty (38:20)
Yeah
Right.
Jenna Udenberg (38:37)
hold it up because I'm a visual person and see if you can see it with the thing. So yeah, so that is actually a picture taken by a good friend of mine at my bestie's wedding at Camp Courage down in the Twin Cities in Minnesota. And so very fitting that that became my cover. But
Carrie McNulty (38:40)
Mmm. nice, yeah!
Jenna Udenberg (38:57)
Yeah, so the process was interesting. I had a great coach and her first wisdom to me was, Jenna, you're a type A teacher. And I said, I have to write this chronologically. And she's like, no, no, no, you don't please don't, because it's not going to be good. I'm like, what? And she's like, write the stories that you have the energy to write for that day. So when you're on a mountaintop, write your mountaintop stories.
Carrie McNulty (39:06)
You
⁓ Interesting.
Jenna Udenberg (39:25)
when you're kind of depressed or in the valleys, write those stories. And also make sure you're taking care of yourself in that process because things will come up. And also don't get super married to all the parts of the book because when you go through the editing process there are going to be things that you just go, ⁓ ooh, I don't know that I want to share that. Or I want to share it but I don't know if the other party in the story is ready for me to share it.
Carrie McNulty (39:46)
Yeah.
Jenna Udenberg (39:53)
And so I was given the word tapestry pretty early on and I didn't really know when I kept trying to force it. And then when the subtitle came up, I was like, that's where you belong, because I wouldn't be myself if I didn't have those amazing relationships, if I didn't have my amazing family, if I didn't have my chosen family. And
my tapestry would have holes in it if I didn't have those hard relationships and those surgeries and those pain filled nights and the depression and this plans of suicide and just all the things that I that I share. And this process has been interesting because this came out July of 2023, I wanted to come I wanted it to come out during Disability Pride Month.
Carrie McNulty (40:23)
Mm-hmm.
Jenna Udenberg (40:37)
Because I am a proud disabled woman and not proud in the negative sense, but proud as in the fact of like, I don't belong under people's table anymore. I don't deserve the scraps that people want to feed me. I belong at this table and ⁓ it should be accessible. Right. Preferably changeable heights with something I can put my feet up on and pop a wheelie like I am with you right now. But you can't see that, but I'm in a wheelie.
Carrie McNulty (40:50)
Mm-hmm.
And at the right height. Yes.
Yes, yes, adjustable.
Yes.
Jenna Udenberg (41:06)
And, uh, but I did take, so the whole book itself took about a year of writing, but I did take about three months off because I was so tired of hearing my own voice. I was so tired of hearing my story. I definitely had imposter syndrome for a while, right? Like, who am I? Who wants to know? Dot, dot, dot. And I was like, ooh, I only have money for my fellowship to do this education side of it. I got to come up with the money to hire my editor. I got to come up with, you know what I mean? So it's just like,
Carrie McNulty (41:35)
Thank
you.
Jenna Udenberg (41:35)
There's some time restrictions. Let's get this done.
The funniest part is like, people will come up to me and even today they're like, oh, this part of your book, like really you spoke to me or I really had a laugh about. I'm just like smiling and nodding. I'm like, I shared that with the world. OK. Good to know. Good to remember, because, you know, a year of writing, it's a lot. And I'm not sad or weirded out by what I share, but just every once in a while when somebody picks out a minor.
Carrie McNulty (41:56)
haha
Jenna Udenberg (42:09)
story and you're like, I shared, I shared what? But my favorite story to tell is my friend Megan. She's in like a chapter and a half and she used to do a water aerobics class and one of her students came in and, Megan, I read your book. Megan's like, what? I don't, I don't have a, what, what book? Did I loan you a book? Like, what are you, what are you talking about? And then she's like, no, within my spokes, your book, I read your book. And she's like, oh, my friend Jenna's book.
Carrie McNulty (42:10)
Uh-oh.
Yeah.
Jenna Udenberg (42:40)
And no, no, no, I read your book. And the other fun story is that my friend Jamie, our president and my bestie and the wedding that the cover is taken at, there's the local librarian is like, I'm fangirling. I need to meet Jamie. She is like one cool lady. Like, when do I get to meet her in person? And so we got to do a podcast about being besties with two besties that have a podcast. So
Maybe at some point she'll come on your show as well, because I'm trying to push her out of the nest to be like, you're always pushing me out of the nest as a mentor, and now I'm going to start pushing you out of the nest. Perfect. I'm like, well, is Carrie's always talking. That's why I signed up, because, a girl after my own heart. So you can get Jamie talking and all the things.
Carrie McNulty (43:08)
I would love that.
Yes, have her do it. I'll go easy on her. No.
I, yes, I've always talking. Yes, that's why there's
a rotary phone on my little icon for the podcast. I would call the operator as a little girl, like three, and just dial zero and then just tell her about what was going on. The dog bit me, the, know, whatever, right? And she'd be like, honey, that's great, but we need to keep this line free for emergencies. Okay, I'll call you tomorrow, you know? Right, it was, know.
Jenna Udenberg (43:37)
⁓
You're my check-in, you're my person. You have no idea who I am.
Carrie McNulty (43:54)
It's the 80s, know, whatever, right? You know, you're, yeah. I was like, somebody's gonna talk to me. It's gonna be the operator, so.
Jenna Udenberg (43:56)
Right? I see I was right.
On my tethered phone into the wall or into the living room or wherever your phone was. Nice.
Carrie McNulty (44:04)
Yeah, yeah, right.
I haven't had a chance to read your book yet, but I really want to. And I think that everybody should. You know? I do, and again, the whole point of me doing what I'm doing with this is that because when we hear people's stories, it becomes more real to us, or...
Jenna Udenberg (44:15)
There you go.
Carrie McNulty (44:25)
for whatever reason about the human condition is that people don't always recognize other people as being human beings that have their own life stories and their own lived experiences. And when people share this, then they start making connections in their own life. I know somebody who's also dealing with this or I have a family member or I whatever, right? And it creates this feeling of being more connected that we've gotten so away from. So I hope everybody reads what you wrote because...
Again, you took the time to share your story and this is how we reconnect with each other is remembering we all have a story and everybody's story matters. So.
Jenna Udenberg (45:02)
And I hope it leads to curious questions, right? And like it starts to can be used as having those harder questions or those harder conversations with your loved one or your workmate or, you know, whatever that that relationship is. Because like, hey, Jenna wrote this book and in this story, she shares this. Do I ever make you feel that way? Or do you have any similar stories of this? Or is she just so
Carrie McNulty (45:06)
Mm-hmm.
Thank
Mm-hmm.
Mm-hmm. Hmm.
Yeah.
Jenna Udenberg (45:30)
a weird person in rural Minnesota that doesn't... doesn't... right. Right. That's okay. I'm used to being a pebble that sometimes gets thrown in the lake. It's fine.
Carrie McNulty (45:31)
haha
that nobody else has ever had that experience, but Jenna.
Right.
Jenna Udenberg (45:46)
But
yeah, and I think too, you know, like you said, and I say it very often, just like you said, you know, like everybody has a story and every single story is important and all of our stories are interconnected. Like we are one ginormous tapestry, whether we want to be or not. And we are all interdependent, like this whole like belief of the American spirit and we are independent and we are silos and we are isolated and lonely and a mess.
Carrie McNulty (45:54)
Mm-hmm.
Yes, for sure.
Yeah.
Do,
Jenna Udenberg (46:15)
So let's stop that. That's not serving us.
Carrie McNulty (46:15)
Absolutely. Yeah. No, we can't do everything on our own. We weren't built for that. We're not supposed to be. We're supposed to, yes, it's OK to be independent as a person, but we are interdependent, meaning we're not islands. We do all need other people. And sometimes we have life experiences that make that harder to trust or harder to want to reach out. But again, with what you're doing and what you're sharing is, you know,
Jenna Udenberg (46:31)
in here.
Carrie McNulty (46:41)
you're showing people that you can have these experiences that are harder in life and still want to connect. And you still do. That's a part of being human. So yeah, it would be nice if we all started to work together a little bit more. I would really appreciate that.
Jenna Udenberg (46:55)
Right. And,
and with labels too, right? Like, labels are used to teach us things, but then don't take it to the next level, right? Like, I'm in kindergarten or preschool now, you know, like, ooh, I need to know that this is a blue crayon, and this is a red crayon, and this is a purple crayon, and this is a green crayon. But blue isn't inherently good, and then therefore red is inherently bad.
Carrie McNulty (47:04)
Mm-hmm.
Mm-hmm.
Right.
Jenna Udenberg (47:22)
And
then purple, ooh, who knows about that one? And green, ooh, right? Like, let's stop assigning worth with the label.
Carrie McNulty (47:25)
Mm-hmm. Yeah.
I think that's
a great idea. Yeah. Yeah.
Jenna Udenberg (47:34)
You know, like
I am disabled. There's nothing wrong with that word. I don't want to be differently abled. I don't want to be handy capable. I don't want to be handicapped because I don't play golf. think golf. I'd rather play in the golf cart, right? Like mini golf, yes. And I'm thankful that now new mini golf courses have to have at least nine holes that are wheelchair friendly. So all about that.
Carrie McNulty (47:47)
Or bowl. Yes, love that.
Yeah.
Jenna Udenberg (47:59)
But, you know, like, and yet for those that are in my community and culture that are listening and they like those words, hats off to you if that's your thing, you know? Like, I used to and now I don't because I'm just at a different place in my journey. ⁓ disability is not a bad word. Accessible is not a bad word. But also for the non-disabled listeners too, it's like stop using accessible for everything else.
Carrie McNulty (48:05)
Mm-hmm.
Mm-hmm.
Mm.
Jenna Udenberg (48:27)
Right?
Like, that trail is so accessible for young people or it's accessible for the early hiker. And it's like, that's our word. Like, hands off. Because it's super confusing, right? Because I'm like, there's an accessible trail that I can hop my firefly on and I can go. No, you did not mean mobility accessible. You did not mean disability accessible.
Carrie McNulty (48:38)
Yeah, right.
Yeah. No.
You just mean
that people can access it. That's all that somebody has at one point accessed it is basically what they're saying. yeah, it means very different things.
Jenna Udenberg (48:54)
Great. ⁓
Right. And I used to work in a school.
⁓ yeah, for sure. And I used to work in a school and literally the label on the door said disabled toilet. And so my sister and I were wheeling and walking by at one time and she was a pair at the school and I said, so I wonder what the diagnosis of the toilet is. And she's like, Jenna Marie. And I'm like, I'm just just being honest. And then the next. Right.
Carrie McNulty (49:27)
It says, yeah, is it a cracked lid? Cracked lid, broken
handle? What is it? Yeah.
Jenna Udenberg (49:31)
right, a little, a little leaky going on, like, who knows,
right? So not necessarily like the next day, all of sudden, I like wheeled past and went, ⁓ my sister got a change. And so then there was a sign over it that said wheelchair accessible bathroom or something like that. I'm like, ⁓ poor disabled toilet, we won't know what your condition is, you know, but I
Carrie McNulty (49:45)
Mm-hmm. yes. Yeah. That makes it sound like you can't use it. Right? Like...
Right?
Jenna Udenberg (50:01)
Like it's really a flower pot now. It is no longer a toilet. is, I just,
don't know. I'm sorry, people that are listening going, wow, she's got something going on. you know, like words matter, vocabulary matters, shared meaning matters. Like, don't know.
Carrie McNulty (50:13)
Absolutely. Yes. Yes. Yes, it all matters.
Why do you think, and you might not know the answer to this, it just sort of popped into my head, but why do you think being labeled as disabled became a thing that was seen as, like the word was bad?
Jenna Udenberg (50:30)
Hmm, that's a great question.
I would say it goes back to really the beginning of time. Like for me and my belief system, if I look back in scripture and in the Bible, there are words that were used that today should not ever be said. And in other religions and other spaces, right? They've always seen like you're different or you're a paralytic or you're demon possessed because you can't act, function and do.
Carrie McNulty (50:47)
Mm.
Okay.
Mm.
Jenna Udenberg (51:06)
all the things other people can do. And so it's really unfortunate that so much of that was believed. And again, it was an ignorance, right? We didn't we didn't know that a seizure disorder was just something happening in the brain. We didn't know that autism was a thing until like now and now it's like beautiful and should be celebrated and, and all the things right and not celebrated in a bad way just to clarify for
Carrie McNulty (51:17)
Mm-hmm. Yeah.
Right.
Mm-hmm.
Jenna Udenberg (51:34)
other listeners, right, like in a real authentic way.
Carrie McNulty (51:34)
Right.
Jenna Udenberg (51:40)
and we all have needs. So I even hate special needs. I hate special education. Like, and I didn't as an educator, right? I used it all the time. And sometimes it still falls out of my mouth. And I'm like, like, all of us have needs. It, they just look different or they act different. Or sometimes my need requires two people, or it requires one person, or your need requires three people. Like, we just make all of these assumptions and putting merit on it that
Carrie McNulty (51:44)
Mm-hmm. Mm-hmm.
Mm-hmm.
Mm-hmm.
Jenna Udenberg (52:06)
doesn't necessarily belong there. It just is. I wish, even though I've had such limited exposure within disability community and culture, because I'm rural, because I'm older, all the things, the few times that I've been at camp for folks with disabilities, if we could all just live the camp life. Because everything I just said just happens there, right? We all have to go to the bathroom, we all have to shower, we all have to eat, we all have to do the things. We all want to have fun.
Carrie McNulty (52:09)
Yeah.
Mm-hmm.
Mm-hmm.
Jenna Udenberg (52:36)
We all want
to hang out. We all, you know, find people attractive or don't find people attractive. You know, like it's it's all a part of life. So like that microcosm where you can just be safe, you can be yourself. And we're all sitting around a campfire, all being vulnerable at the same level. Like what what better way like finding our people, finding our tribe, finding all those different
Carrie McNulty (52:56)
Mm-hmm.
Yeah.
Jenna Udenberg (53:05)
ways of saying, like, just being a good human.
Carrie McNulty (53:09)
And being people together. Yeah. Doing what we all do when we get together with our people. We're just doing those things. So yeah. Is there any questions that I didn't ask you that you wanted to share about? Or do you have anything, words, parting words for
Jenna Udenberg (53:12)
Great.
for you.
I think the biggest thing I would ask listeners is, you know, what is it about disability that makes you uncomfortable? What is it about your own abilities, or maybe lack thereof that makes you uncomfortable as well? Because like we said, everybody's going to experience this life, and it's going to look different, it's going to feel different, it's going to just be different, right?
Carrie McNulty (53:45)
Mm-hmm.
Jenna Udenberg (53:56)
And then also, you know, don't tokenize people. Don't like just go be like, I'm gonna go a friend, Jenna on Facebook because I need a disabled person in my roster, right? But but really have authentic and if you don't have known disabled friends in your circles, maybe it's time to do something about that. Maybe it's time to intentionally and authentically and organically put yourself in those spaces. ⁓
Carrie McNulty (54:15)
Right.
Mm-hmm.
Jenna Udenberg (54:25)
And then also the flip side for me is if there's disabled folks out there that don't have non disabled friends that aren't sharing their stories with others when they're safe, because we all are vulnerable adults or vulnerable children, like let's let's not get into bad unhealthy spaces. But we also can't be the us versus them in my opinion, because that serves none of us. And I've learned that I get a lot more reception with honey and laughter.
Carrie McNulty (54:35)
Mm-hmm.
Right.
Right.
Jenna Udenberg (54:54)
and honesty than I get with having vinegar or law or the negativity. And so, you know, that's just my lived experience of how to do things. ⁓ But yeah, and I would love to have more conversations with listeners, so to check us out and to connect with us. And it's not just about the consulting and the training and all the things and selling the books that all the profits go straight to our nonprofit work.
Carrie McNulty (55:02)
Mm-hmm.
Jenna Udenberg (55:21)
But it's really about making solid relationships and being partners in the work ahead.
Carrie McNulty (55:27)
Thank you so much for coming on and sharing your story and talking about your nonprofit and your book. I'm going to link all of that in the show notes so people can check it out and I hope that they do.
For everybody listening, I will be back in another couple of weeks with another episode. And until then, please take good care of yourselves, and we'll talk soon.
