Above and Beyond - Jenna Odenberg

This episode moves beyond the "binary" of accessibility to explore the lived reality of disability advocacy. Hosts Lachandra and Brian are joined by Jenna Odenberg—Bush Fellow, author of Within My Spokes, and founder of Above and Beyond with U.

Jena shares her journey from navigating rural Minnesota in a manual wheelchair to a 20-year career as a music educator. From the "fixed mindset" of teachers who said she couldn't play trumpet left-handed to the vital "A" in DEIA, Jena illustrates why inclusion must be a commitment, not just a checklist. The trio dives into why we must design with people, not just for them—and even settles the "over vs. under" toilet paper debate with a perspective on accessibility you’ve likely never considered.

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Transcript

Everything's Not Black & White

Above and Beyond - Jenna Odenberg

Episode Transcript

Intro Announcement:

Welcome to Everything's Not Black and White with your hosts, Lala and Brian.

Lala:

Hello everyone. Welcome to today's episode.

Oftentimes when we talk about disability and accessibility, the world tries to make it very binary: a building is either compliant or it isn't, a person is either abled or they aren't. But our guest today, Jena Odenberg, is here to show us that the true tapestry of the human experience is much richer than that.

Jena is a 2020 Bush Fellow, a 2025 Shannon Leadership Institute Fellow, and the founder of the nonprofit Above and Beyond with U. She spent nearly 20 years as a music educator before transitioning into her current role as a premier disability advocate and consultant. She's also the author of the powerful memoir Within My Spokes: A Tapestry of Pain, Growth, and Freedom, and she writes the local column "View from 4'2"" for the Lake County Press. Jena has navigated the world from a manual wheelchair for over 40 years, and she's here to talk about why inclusion isn't just a checklist—it's a commitment.

The ENBW Podcast would love to welcome Jena to our show. Welcome, Jena! So glad you're here.

Jena:

Yeah, thank you so much for having me.

Lala:

Yes, absolutely! So much of the work we do with our company, LBB Edutainment, revolves around diversity, equity, and inclusion, and why the world has to be built based on the lived experiences of all, not just some. Having your expertise and lived experience here to share insights with our listeners is so close to my heart, so thank you again for being willing to share your story.

Jena:

Yeah, absolutely.

Lala:

Let's give people a little insight into your background. Where did you grow up, and what are some of the things you remember most about your childhood that shaped the person you are today?

Jena:

Great way to start at the beginning! I grew up in rural Northeast Minnesota, on the shores of Lake Superior, in a small town of about 3,800 people. I graduated in a class of just over 120 folks. I grew up with three older siblings who are 16, 15, and 12 years older than me. So in one way, I'm the baby of the family by a lot, and in other ways, I was kind of like an only child.

I grew up as a tomboy—I loved picking agates with my dad on the shores of Lake Superior, loved fishing, and loved spending time outdoors. When I was five years old, I got a black lab that I named Blackie.

Lala:

Oh wow, that is powerful! I don't know how you dug deep for that one, but that's pretty cool!

Jena:

Right? I dug deep for that one! I became sick at age seven and was in a wheelchair by age eight. I had great classmates, great friends, and a great family. That didn't negate the fact that life sucked and was painful at times, especially for a child. But I've always told people I'm very thankful that I became disabled as a child because children are resilient. When you don't know anything different about life, it makes it easier in the long run than if I had acquired my disability as a teenager or in my twenties or thirties.

Lala:

Can you share with our listeners what you were diagnosed with at age seven?

Jena:

Back then it was called juvenile rheumatoid arthritis (JRA). Then about 15 years ago, down at the Mayo Clinic in Rochester, Minnesota, they explained that they don't really call it JRA anymore because it doesn't follow the typical rheumatoid process. When I was younger, doctors would look in their medical books and say, "A + B = C, so we're going to give you this treatment and your body will do this." And my body would go: "Q × $\sqrt{R}$ × $S^3$, and you might get T!"

From an early age, I knew medical textbooks and my body didn't equate. Now the medical community calls it juvenile idiopathic arthritis—where "idiopathic" simply means they don't know where it comes from or how it's going to react.

Lala:

I was diagnosed with cancer at 42, and I know how that emotionally devastated me. How does a diagnosis that alters your life trajectory affect a seven-year-old?

Jena:

For me, I'm thankful that many of those hardest memories have faded over time, though I do remember catastrophic flare-ups where you're in nothing but severe pain. The treatment back then was prednisone—which makes you high as a kite, gives you the munchies, and causes weight gain, which is then terrible for joint arthritis! There was always a trade-off. I hate hearing that terminology from medical providers because this is my existence, and I want to thrive, not just survive.

Lala:

That's exactly right. I was diagnosed with lupus in my late forties, which is an autoimmune condition similar in many ways to rheumatoid arthritis. I understand that pain and those limitations intimately, and learning how to thrive rather than just survive is so vital. We were born for so much more than mere survival.

Jena:

Growing up in the late eighties, I was already in a wheelchair before the Americans with Disabilities Act (ADA) was even passed by Congress! Looking back at history, I realize how much things have shifted.

Until I got connected to wheelchair basketball and connected with disability culture and community, I didn't know what was possible because there wasn't representation. Even today, we're fighting tooth and nail for representation in media, arts, and business.

One in four Americans identifies as having a disability—and disability isn't just mobility or wheelchair use; it's a vast spectrum. But "identify" is the key word, because "disability" is still treated like a bad word with negative connotations in society. It focuses on the binary: if it's different, people assume it's bad. We've been "othered" in so many ways. Then you add intersecting layers—being female, Black, Latina, LGBTQ+, rural vs. metro, or educated vs. uneducated.

Lala:

That's all the things layered on top of each other.

Brian and I were out in Long Beach, California, recently, and it was the first time we saw matting on the beach—walkable, rollable ramps leading directly onto the sand so wheelchair users have beach accessibility. We thought that was such an incredible feature.

Jena:

I've yet to be on a Mobi-Mat, but that is definitely one of my goals!

Lala:

Living in Columbus, Ohio—where we get winter weather similar to Minnesota—one of our major local frustrations is when snowplows clear the roads by pushing mountains of snow directly onto the sidewalks and curb cutouts. For people using wheelchairs or mobility devices, it makes getting around nearly impossible. It bothers me greatly how little thought or care is given to basic physical accessibility.

Jena:

We had a 22-inch blizzard two weeks ago, and there are still mountains of snow blocking sidewalks and bus stops. The lack of care and forethought about accessibility for so many people is extremely bothersome.

People try to argue, "Well, if we make things accessible for that demographic, we're ignoring the majority." No! If you make things accessible, all are welcome, all are safe, and everyone's needs are met.

Back when I was a music teacher, people would use terms that drove me cuckoo. Your needs are no more "special" than mine, so why do I get labeled as a "special needs" person?

Lala:

Girl, you just said a whole mouthful right there! People ask, "Why is it all about you?" when you advocate for accessibility, and you have to explain, "It's not about making it all about me; it's about asking you to make room for me so I can participate!"

You spent nearly 20 years as a K-5 music educator. Music has driven my whole family's life—my husband plays guitar and saxophone, our sons played drums and sousaphone! Tell us a little about your music journey.

Jena:

In sixth grade in rural Minnesota, we were able to start band. My older sisters played cornet and flute. I was a tomboy, so I didn't want the flute! I borrowed my sister's cornet to start.

During sixth grade, my right elbow started fusing naturally from the arthritis. I tried wrapping a purple sparkly shoelace around the horn to make a neck strap like a saxophone. Then I started teaching myself how to play left-handed.

My band teacher at the time was a well-known trumpet player finishing out his career. He came to me in sixth grade and said, "Well, you're going to have to pick a different instrument because there's no such thing as a left-handed trumpet player."

I went: "Oh, you just told an Odenberg no! Hold my beer, buddy, because here we go!"

Lala:

That was such an adult fixed mindset!

Jena:

Exactly! Adults get so afraid of looking foolish or failing, but children feel invincible. By eighth grade, I had an amazing band director who saw me for who I was, taught me rhythm, gave me space to fail, and gave me opportunities to lead.

By ninth grade, I was one of the lead trumpet players, and by tenth grade, I was the lead trumpet player in the high school jazz band—winning superior awards at state solo ensembles. That was my equal playing field.

I went into music education not because of chord progressions, but because I wanted to find those ostracized kids who needed music as their language or needed a safe space to figure out who they were.

Brian:

You mentioned the ADA passing in the 1990s, which brought about curb ramps and accessible building entrances. With DEI and accessibility initiatives currently facing pushback in corporate and political spheres, do you feel like society took a step forward only to take a step back?

Jena:

A thousand percent. I try to be a Realistic Rachel rather than a Debbie Downer. Even within traditional DEI frameworks, the disability community often has to ask: "Where's the 'A'? Where is Accessibility?" It's supposed to be DEIA.

Practitioners will say, "Well, accessibility is implied under Inclusion." But it's okay to explicitly build a ramp and state, "We are building this ramp because disabled people have inherent worth and deserve to be included in our business and community."

People often placate accessibility by framing it as: "Oh, it helps moms with strollers or delivery drivers!" While two things can be true at once, disabled people have worth on their own without needing to justify accessibility through non-disabled benefits.

Brian:

I just went to a Columbus Blue Jackets NHL game here in town, and one thing they promote is providing certified sensory bags with noise-canceling headphones for attendees with autism or veterans with PTSD—especially since nationwide arena fires a loud cannon after every home goal. It blows my mind that anyone would oppose making spaces accessible for a child or a veteran.

Jena:

Human nature can be selfish when something threatens perceived power or control. We haven't been taught how to ask curious questions; we've been taught how to divide and conquer, make assumptions, and believe that two things can't be true at the same time.

Disability is a natural part of the human experience that almost everyone will navigate if they live long enough. There's a motto in disability culture: "Nothing about us without us."

Lala:

We say that all the time in equity-centered design! You cannot design systems for a community without including that community in the process.

Jena:

Exactly! Don't call my nonprofit in after the building is already constructed and you're looking for a ribbon-cutting sticker. Retrofitting after the fact is always more expensive than involving disabled stakeholders from day one.

Compliance is just checking off the bare minimum of a code. Inclusion is a commitment.

And don't treat disabled people as tragic or inspiration porn. People will say, "Oh, you're so inspirational for just going to work!" Do you say that to a non-disabled CEO when they show up to the office? No! Disabled people can have bad days, be jerks, or just be living their everyday lives.

Lala:

What can non-disabled people do to be genuine allies and advocates in everyday life?

Jena:

It comes down to simple, practical consideration. Do the next right thing.

If you're in a public restroom with encased toilet paper dispensers, leave a little bit of paper pulled out for the next person who might have limited wrist mobility. Wipe down the sink counter when you're done so the next person using a wheelchair doesn't get wet sleeves.

And use your social capital! When you're at a hotel and notice there isn't a lowered section at the front desk, or when you're at a clinic and notice the accessible check-in counter is unstaffed—say something! Speak up so disabled community members don't constantly have to carry the sole burden of advocating for basic access.

Slow down, look around your friend group and workplace, and ensure disabled voices are actually present.

Brian:

I don't mean to pull you into a famous worldwide debate, but speaking of toilet paper... is it over or under? What is the accessible way?

Jena:

For me, it is always over! Because my right arm has limited range of motion, if the roll is under, I pull it like a cat and unroll the whole thing! If it's over, I can use my arm as a hook to catch it and tear. So it's always over in Jena's world!

Brian:

That settles it! That's how it's going to be in my house from now on, too!

Lala:

You just gave him all the leverage in our house, Jena! We are an "over" household going forward!

Jena, you are an absolute delight. How can our listeners connect with you, buy your book, or support your nonprofit?

Jena:

Please check out our website at aboveandbeyondwithyou.org (spelled with the letter "U" for "With U"!). You can also find us on LinkedIn, Facebook, and Instagram.

My book, Within My Spokes: A Tapestry of Pain, Growth, and Freedom, is available wherever books are sold, and all proceeds go directly toward funding our accessibility consulting, training, and site assessment work at Above and Beyond with U.

Lala:

All of those details will be in our show notes! Thank you so much for your advocacy, your humor, and for sharing your lived experience with us today.

Jena:

Thank you so much for having me!

Lala:

Brian, how can people stay connected with our show?

Brian:

You can email us at embwpodcast@gmail.com, and follow us on Facebook and Instagram!

Lala:

That's all the time we have for today. Thank you again to Jena Odenberg, and thank you to all our listeners. We'll see you next time!

Brian:

Bye-bye!