April 1, 2025
Disability Is Not a Bad Word: Jenna Udenberg on Advocacy and Accessibility
Disability advocacy transcends ramps and automatic doors—it's about creating a world where everyone belongs in every aspect of community life. Jenna Udenberg joins us to share her powerful journey from diagnosis with juvenile rheumatoid arthritis at age seven to becoming an author, disability advocate, and accessibility educator.
Diagnosed in the late 1980s and using a wheelchair since age eight, Jenna navigated a world before the Americans with Disabilities Act established basic protections. Despite these challenges, she built a 19-year music education career before pivoting toward accessibility advocacy. As a 2020 Bush Fellow, the pandemic forced her to reimagine her plans, ultimately leading to writing her book "Within My Spokes: A Tapestry of Pain, Growth and Freedom" and founding her nonprofit, Above and Beyond With U.
Jenna challenges us to recognize that disability is simply part of the human experience—not something to fear or pity. With approximately 24-29% of Americans identifying as disabled, it's a community anyone might join through accident, injury, or medical condition. Her work focuses on creating spaces that go beyond minimum compliance, asking critical questions: "Can we use the restroom? Can we grab coffee? Can we be employees here?" These questions shift the focus from technical requirements to meaningful inclusion.
Through stories like playing trumpet left-handed against her teacher's advice, Jenna illustrates how disability often sparks innovation and resilience. She leaves us with a powerful challenge: Don't just call her story "inspirational"—ask yourself what you're inspired to actually change. Visit aboveandbeyondwithU.org to learn more about creating spaces where everyone truly belongs.
Want to be a guest on Living the Dream with Curveball? Send Curtis Jackson a message on PodMatch, here: https://www.podmatch.com/hostdetailpreview/1628631536976x919760049303001600
00:00 - Introduction to Jenna Utenberg
03:12 - Bush Fellowship and Pandemic Pivot
07:31 - Becoming an Accessibility Educator
09:02 - FIRST Lego Robotics Coaching
13:07 - Why Disability Is Not a Bad Word
19:05 - Trumpet Playing and Life Lessons
21:29 - Writing "Within My Spokes"
24:16 - Above and Beyond With You
WEBVTT
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Welcome to the Living the Dream Podcast with Curveball, if you believe you can achieve.
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Welcome to the Living the Dream with Curveball Podcast, a show where I interview guests that teach, motivate and inspire.
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Today, we're going to be talking about disability advocacy, as I am joined by author, disability advocate and accessibility educator, jenna Utenberg.
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Jenna was diagnosed with juvenile arthritis at just seven years old.
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Diagnosed with juvenile arthritis at just seven years old, you know, in 2020, she was a Bush fellow.
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We'll be talking to her about what that is, and we're going to be talking to her about everything that she's doing to help create and make accessible spaces for everyone.
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So, jenna, thank you so much for joining me today.
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Yeah, thank you so much for having me, Curtis.
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Why don't you start off by telling everybody a little bit about yourself?
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Yeah, so, as you shared, I was diagnosed at age seven with juvenile rheumatoid arthritis and I was a manual wheelchair user since age eight, so my disease progressed pretty rapidly.
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I grew up in a small rural town on the beautiful shores of Lake Superior, on the North Shore in Minnesota.
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That came with lots of different challenges.
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Being back in 1988 was my diagnosis date, so a couple of years before lack of a better word fights to gain access, to gain rights, to gain equal access to things that my peers always had.
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I went to a local university for two bachelor's degrees.
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I have one in vocal music education and one in instrumental music education.
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I went on to have a 19-year career as a music educator, both in a private studio, in charter schools, in parochial schools and in public schools.
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I am a 2017 Blandin alum, so that was for community leadership training.
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Like you said, I'm a 2020 Bush fellow, looking forward to talking more about that and that amazing opportunity and how that changed my life.
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And when I'm not out on the trail in my Firefly, that makes my manual wheelchair into a like a three wheeled electric kind of scooter, kind of like an e-bike, but with a wheelchair you can find me playing card games and board games with friends and family.
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You can find me coaching Lego Robotics, which has been a passion of mine for the last 12 years, and you can just find me reading books and doing all the things and having great conversations with people.
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Yeah, let's go ahead and get into that.
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2020 Bush Fellow Kind of explain to listeners what that is and how it did change your life.
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Yeah, so the Bush Fellowship, the foundation, resides in Minnesota, but the fellowship is for anybody that lives in North Dakota, south Dakota, minnesota or the 23 tribal nations that are in those geographical locations.
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And when I went through it in 2019 to be selected as a 2020 Bush Fellow, there was I believe it was like a four-step application process and really deep diving questions around your self-reflection, around your leadership, around the things that encourage you and inspire you to continue on as a community leader, and also the things that are challenges or hindrances or barriers that you need to overcome, or maybe self-care, soul care type situations.
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And so with it, you can do a like a pre-described fellowship, meaning you could use it for future education or further education, so getting another bachelor's, going on for a master's, working on a PhD or certifications, or you can kind of go on your own self-adventure, which is what I chose.
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And so 2019, everything was normal, right.
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So the tagline for Bush Fellowship is to think bigger and think differently, and so in that application process, it had me, who had never flown before, dreaming of wheeling in places that the civil rights and disability rights activists have walked and wheeled, and so I wanted to go to Berkeley, california, of course, right.
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See where Section 504 came to be after months of sit-ins.
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And see where Judy Heumann rolled.
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And see where Ed Roberts and be at UC Berkeley campus and all the amazing accessibility that they have that many places in the United States and worldwide don't have.
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I wanted to go to Bradford Woods, one of the leading rehab centers in the Midwest.
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I wanted to travel to a community in Florida that completely revamped all of their restaurants and their whole hospitality industry.
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So in their small community, everything had power doors, all bathrooms were accessible, where disabled advocates that I know have gone personally and people have asked them so what do you think about our accessibility?
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And they felt weird and different and they couldn't figure out what that weird and different thing was.
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But it was because every need was met and they didn't have any barriers they had to overcome while they're on vacation.
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And I wanted to travel to the most accessible country in the world, which is Sweden.
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They have earned that distinguishing award many, many years.
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And so here's this you know young woman from the North shores of Minnesota who had never flown before and who had made these four ginormous plans, and we were told in I believe it was May of 2020, that we were Bush fellows, and then it was announced to the world in June, and we all know that in March the whole world changed, and especially for someone like myself with not only my physical disabilities, but I also have immunocompromisation both from diabetes and from multiple medications that I'm on for some of my medical conditions, and so it was the first time that I had the experience of what it's like to have an invisible disability, because I'm so used to everybody seeing my wheelchair and what that means, but a lot of times people don't understand those next levels of invisible disabilities.
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So it was a very pivotal time in life.
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During that time, I also was told from my school district that they were no longer interested in accommodating my work from home order work from home order, sorry and that kind of led to an identity crisis a wee bit, you know.
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After being a music teacher for 19 years, that was a hard pill to swallow, but that's where accessibility educator came from a hard pill to swallow, but that's where accessibility educator came from.
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Okay, well, explain to listeners what an accessibility educator is.
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It's kind of a term that I kind of coined on my own or that was kind of given to me.
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So the way that I view it is, I felt in that during that identity crisis, you know, I felt like I was never an educator again.
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And that's not true, because once you're an educator, you're always an educator, and we just look at the the world differently.
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We look at it from multiple hats, different lenses, different viewpoints, asking, curious and wanting spaces to be equitable, maybe more so than the common person.
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And we typically have a more self-reflective practice as well in the educator world, because we're always trying to do our craft better each day, each quarter, each classroom, for each kid and each family.
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So then, of course, the accessibility part for me is more based in my life story of being a mobility disabled person.
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I never want to speak for disability culture and community as a whole because I can't live and experience all of the different disabilities that are there, but I can be a conduit for others to hear other people's stories and embrace that everybody's story is important, disabled or non-disabled.
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Okay, you also said you coach Lego robotics, so explain to listeners what that is.
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Yeah, it was an unlikely pairing.
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I had a retired engineer come into my music room one day and he thought I was going to be like a math or a science teacher.
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And he came in and he saw all these xylophones and recorders and all these typical general music classroom instruments and he's like, wait, you're not a science or math teacher.
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I I said, nope, I'm music and I'm the cog of the wheel that brings all of the different disciplines of learning together.
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And who knew that I'd be starting my 13th season as a FIRST Robotics, lego Robotics Coach?
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And so FIRST is an international nonprofit organization that provides, I believe it's, four different levels of robotics.
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So many listeners that are in the United States and actually throughout the world would probably know FIRST Robotics Competition.
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So that's like in our world, the high school level of the bigger robots that people you know work together with industry leaders and sorry, I can't remember my word right now, but they create using all of the different metal pieces and the gear structures and very high level coding and you know they're doing all the welding and all those kinds of things to create the robots.
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My level would be the next level down, which is first challenge.
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And so every season, the beginning of August, its first challenge.
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And so every season, the beginning of August, internationally, it's announced what the theme for the season is going to be.
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So for this, last year, the theme was submerged, and so every Lego robotics team has to come up with a real world problem and a real world solution.
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So this year it was figuring out what do oceanic explorers encounter as barriers in their research and what are things that these middle school early high school kids can create to help them, that these middle school, early high school kids can create to help them fix those problems that they encounter.
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And then another part of it is the core values.
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So we have practiced the six core values that FIRST gives us.
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So it's discovery, fun, teamwork, innovation, inclusion.
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And there's one more I, but I'm in the off season, but there's six of them and it's great.
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It's one of the most important parts of the program for me.
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And then comes a robot game, which everybody thinks is like the most cool part, because you get a specific map that has different colors, different themes.
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So on this board you saw lots of waves and bubbles and coral and you know typical things that you would expect to see in the underwater and then on the mat.
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You get about anywhere from 3,000 to 5,000 Lego pieces and you get build instructions.
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So you have to make anywhere from like 12 to 15 mission models and then your team has to design a robot and figure out how they can complete as many missions as they can in two and a half minutes.
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And then they also have to do a robotic or a robot design presentation for five minutes in front of judges and then get 10 minutes of question and answers and that's a similar format for the innovation project of the research project.
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So it's a very intense program.
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Our world usually goes from like August to March or April, depending on how far our team advances at the different regional, sectional and state and world's levels.
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But it's a great program.
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It helps young people critically think.
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It helps them work together.
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It helps them learn how to problem solve, helps young people critically think.
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It helps them work together.
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It helps them learn how to problem solve.
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It helps them learn how to solve disagreements, work with adults, work on interview skills, presentation skills.
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It's a lot but it's really worth it and it kind of makes a microcosm of a family in between every team.
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And then we have outreach where we get to know other teams and just really celebrate the spirit of FIRST.
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Okay, well, I know in your bio you talk about how disability is not a bad word, so explain to the listeners why you feel that way.
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So everybody experiences disability in some way.
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With 24 to 29% of the American population identifying as disabled, that number grows every day, and so disability culture and community is the most diverse minority group, and anyone can enter our culture and community at any moment, whether it's through accident or injury or medical condition.
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Some, you know all of us will acquire a disability, more than likely, at some point of our life or will be deeply impacted by someone we love or work with.
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And so so often disability has has been a bad word.
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Society has turned it into something that we lack, something that we are not a part of, and so our community now is saying that it's not a bad word.
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It's something we all experience in some way or another, and we all have needs, and there's nothing special about our needs, right?
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We all have the need for belonging, we all have the need for community, we all have the need for food and restrooms and safe places, and so it's really just flipping the script of what's positive and inclusion is important.
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And the second part is why do you feel you know people should go above and beyond the ADA code?
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That's great.
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So accessibility and inclusion are huge, because without either or both of them, like I said earlier, you don't have a sense of community, you don't have a sense of belonging earlier, you don't have a sense of community, you don't have a sense of belonging.
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So often in my work with Above and Beyond With you, my nonprofit, so often people are focused on getting mobility disabled people in the door, whether it's a ramp, whether it's a power button, those are kind of the big ones, but then a lot of times they do those things and then I'm in their spaces and I say, okay, so now what?
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And it kind of puts them back on their heels because they go.
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We haven't thought about that.
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So can we use the restroom there?
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Can we grab a cup of coffee?
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Can we go in the staff lounge area and make a lunch?
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Can we be an employee in your space?
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So there's a lot of next steps in what we are thinking, and so therefore, above and beyond the ADA code, the spirit of ADA when it came into being was part of community employment, all of those things the spirit of the ADA was.
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Here's some general ideas.
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Here's this thing called universal design.
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Here's how we can help people with different looking needs, different time needs, different physical needs, to be not just a contributing part of society, not just people that can be gainfully employed, but, like, truly a part of all parts of community.
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And so, with Above and Beyond, with you, we work hard at trying to get that message across, that we want commitment to the ADA, we want commitment to making things accessible and inclusive for all people, and not just a checklist so you can feel good about yourself or not good about yourself, but that we're working together in partnership to make sure that we are doing the best things possible so everybody can be a part of life and the things that are going on in these spaces and places.
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Well.
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Share a challenging story with listeners from your life.
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You know that helped you and encouraged you to grow and move forward.
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There are so many, I would say the one I like to tell the most is I was a trumpet player and early on in my sixth grade year we had a phenomenal trumpet teacher and a band director here in our small town and I started experiencing where my right elbow was starting to fuse, which meant my elbow, by way of the arthritis, was super painful and it didn't want to bend anymore, and so naturally I was just used to accommodating and adapting in my brain because I'd been doing it already for five, six years, and so I started playing the trumpet left-handed.
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And he came to me one day and he said we don't do that here, there is no such thing as a left-handed trumpet player.
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And I perceived to use my stubbornness to prove him wrong, and so after a couple of years he actually ended up retiring and by the time I was in eighth grade I had an eighth grade band director who invested a lot in me, not only in eighth grade but throughout my high school career, and now she's a great friend and definitely still a mentor and an important part of my tapestry of my life.
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And I talk about that in my book, a lot about how it's not just stories about me, but it's a story about all the people who make up who I am and the life that I've been given.
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And so she inspired me to become a band director, not because of the music history or the music theory or that I love certain composers, but for the fact that she treated me as someone that had value and that had meaning, and that it didn't matter if I was the first trumpet player, which I was, or if I was the last trumpet player, because every person has that musical ability, every person has worth.
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Person has that musical ability, every person has worth, and she just really shaped who I became today and who.
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I hope that I've inspired my former students and my current robotics kids to push farther and to push, push deeper and to find more about yourself, because you are important and your story is needed in this world and your voice is needed and your skills and talents are needed.
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Speaking of your book, go ahead and talk about that book, you know.
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Let listeners know what they can expect when they read it, why you decide to write it and where they can get it from.
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Yeah, the book is titled, Within my Spokes, a Tapestry of Pain, growth and Freedom.
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I wrote it or it was published in July of 2023, and you can get it on Amazon or anywhere where you buy your books.
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It comes in Kindle or ebook or paperback and I'm hoping to release the audiobook this summer.
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So in writing this book, since I was a kid, in all my different medical medical settings, I've always had providers say Johnna, you need to write a book like the amount of life that you had lived, even as a young child.
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There's funny stories, there's painful stories, there's there's stories to to learn from.
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And so when I was going through the Bush fellowship and my whole life turned upside down because obviously I wasn't able to go and do any of those trips, I had to figure out how to use that fellowship time, those funds, to make a bigger mark.
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And at that time I had seen I don't want to say an advertisement, but maybe a webinar about how now, instead of using business cards, a lot of people are using a book tell your story.
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Because you don't have time to go and have 300 coffee or lunch dates with people to tell your story, but you might have time to write a book within six months to a year and then a lot of people get to know your story and then they can reach out and you can make those partnerships and connections by way of story.
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And so I embraced that and went on the self-publishing journey and my fellowship was able to pay for some of the writing, training and classes and coursework that I was able to do in the process and I had a great coach at the beginning of my journey there and she gave me the permission to only write the things that I felt like I had mental and emotional capacity to write on any given day.
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So, being a type A, I didn't have to write everything chronological order.
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I could jump around in my story and write the good things on the happy days and the hard things on the hard days.
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And I will say that in the writing process it has been therapeutic to get to another level of maturity in my disability, another level of acceptance in my disability and another level of passion to right the wrongs that happened to me and my family growing up before the ADA and early ADA days, before the ADA and early ADA days, and try to make it better for the families and especially the young people that are facing the disabled life in the areas that I'm currently living.
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Well, tell us about any upcoming projects that you're working on that listeners need to be aware of.
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So I am continually working with Above and Beyond With you and listeners can find us on Facebook and LinkedIn and Instagram as well as at our website, which is Above and Beyond With you, capital U, and the title of the nonprofit came out of, like I said before, above and Beyond Code.
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But the With you is a nod to my musical career because, as you can know by my last name spelling, you can only imagine a little five year old or kindergartner trying to say hey, miss Udenberg.
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So they kindly changed my name to Miss U.
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So it's above and beyond with you as a capital U.
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But it also stands for, more importantly, that our nonprofit is a lot of people tied to the education world, whether they are paraprofessionals or educators or adaptive PE teachers or occupational therapists in the school setting.
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We all come at the work that we do as a nonprofit from that educational lens and we want it to be a partnership with all the people we work with, whether it's individuals or small businesses or state agencies or beyond.
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We want that connection to be a learning one for both sides and being mutually beneficial, not just a drop in the pan of a one-time connection with the entities or agencies, connection with the entities or agencies.
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Okay, Well, you answered my next question Throw out your website Above and Beyond With you capital U.
00:23:47.838 --> 00:23:49.602
So close us out with some final thoughts.
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Maybe, if that was something that I forgot to touch on, that you would like to touch on any final thoughts you have for the listeners and give out that website one more time.
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Yeah.
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So the website is wwwaboveandbeyondwithyouorg.
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There's a contact us format on there.
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There's more where you can see the services we offer.
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There's also a link there to get my book within my spokes.
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Final thoughts I guess I would say Embrace where you're at in your disability journey, whether it's you yourself are disabled, someone you loved is, or maybe it's a neighbor, someone you just kind of know of.
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Embrace curious questions and try not to make assumptions, and when we know that we're making assumptions or living out of a bias, that we would take that extra time to really examine that and then also take times of change.
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So many times people tell me oh, jonna, you're so inspirational and I want to come back and say, well, thanks for that.
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But that word seems very misguided sometimes, and so my next step is always like so what are you going to?
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What are you inspired to do?
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What are you inspired to change?
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What are you inspired to continue to do?
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That is a good thing, that's making life better for others and that we can all live in community together.
00:25:12.855 --> 00:25:13.096
All right.
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Ladies and gentlemen, Above and Beyond, with you, capital U dot O-R-G.
00:25:18.107 --> 00:25:27.086
Please be sure to check out Jenna's book, Check out everything that she's up to Follow, rate review, share this episode to as many people as possible.
00:25:27.086 --> 00:25:29.680
Jump on your favorite podcast app.
00:25:29.680 --> 00:25:32.507
Follow the show, Check it out, Share it.
00:25:32.507 --> 00:25:35.618
If you have any guests or suggestion topics.
00:25:35.618 --> 00:25:37.500
The show has a new website.
00:25:37.500 --> 00:25:42.849
Please visit wwwcurveball337.com.
00:25:42.849 --> 00:25:46.423
Thank you for listening and supporting the show.
00:25:46.423 --> 00:25:48.862
Jenna, thank you for all that you do.
00:25:48.862 --> 00:25:50.397
Thank you for joining me.
00:25:51.240 --> 00:25:52.925
Thank you so much, curtis, it's been great.
00:25:54.077 --> 00:26:02.465
For more information on the Living the Dream with Curveball podcast, visit wwwcurveball337.com.
00:26:02.465 --> 00:26:06.625
Until next time, keep living the dream.
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