Seeing the World from Four Foot Two- Identity, Access, and Advocacy with Jenna Udenberg

Most people move through the world without thinking about how they move through the world. The door opens. The bathroom fits. The seat is reachable. For Jenna Udenberg, none of that has ever been a given.  And after nearly four decades navigating life from a wheelchair, she has stopped waiting for the world to catch up — and started educating it.

Jenna is an educator, author, and founder of Above and Beyond with You, a nonprofit dedicated to accessibility education in its fullest sense. Her memoir, Within My Spokes, traces a life shaped by juvenile arthritis, identity crises, the pandemic's invisible toll on disabled workers, and the hard-won freedom that comes from building a community instead of just surviving one. In this conversation, we talk about what the ADA actually means (and doesn't), the difference between compliance and genuine inclusion, the emotional exhaustion of constantly educating others, and the small but radical act of asking someone how they want to be described.

This one is for anyone who has never had to think about whether they can get through the door — and for everyone who has.

Show Notes with Chapters

00:00 Cold open — the ramp and the button aren't enough: accessibility beyond the front door

01:06 James introduces Jenna: educator, author, wheelchair user, founder of Above and Beyond with You

02:04 The view from four foot two: Jenna's perspective on perspective

03:23 Diagnosed at seven, in a wheelchair by eight — and the ginger snap she lost before all of it

03:46 The Firefly attachment, paved trails, and finding the biking community during the pandemic

04:46 The bikers looked her in the eye — why that was a profound and unusual experience

08:06 Why James wanted this conversation: the invisible design of everyday life

09:02 Self-advocacy from childhood — and the parents who made Jenna the decision-maker about her own body

10:28 "Leave places better than you found them" — the family ethos that became a life philosophy

11:30 The Journey Award, the superintendent, and the moment Jenna climbed on her soapbox

12:27 Not seeing herself within disability community until the last three years — and why rural isolation makes it harder

13:05 The ADA myth: the largest unfunded mandate in U.S. history

14:27 The Blandin fellowship, the identity cost of leadership retreats, and navigating access needs in unfamiliar spaces

15:47 The pandemic strips the superwoman persona — invisible disabilities become visible for the first time

17:00 The district, the lawyers, and the identity crisis of not getting to say goodbye to her students

18:17 Being given the words "accessibility educator" — and the aha of a new identity forming

19:04 The Bush Fellowship, the memoir, and how Above and Beyond with You was born

21:12 What the work actually looks like: speaking, paneling, partnerships, and the long-game "with you" model

22:26 "Nothing about us without us" — the consulting firm with no disabled employees

24:59 Creating safe spaces to make mistakes — and why Jenna still says "handicap parking" even though she hates it

26:15 Advice for new caregivers and newly disabled families: the grief cycle, community, and not rushing

28:26 Medical model vs. societal model vs. disability culture — and the moment Jenna caught herself diagnosing

strangers

30:44 "I have scars, but not open wounds" — what it means to be a veteran disabled person

33:19 Finding community online — Facebook groups, information overload, and discernment

35:42 Accessibility in real spaces: James shares the Weymouth Center renovation story

39:46 The Carnegie Library transformation — from inaccessible bathrooms to the first adult changing table in the region

42:19 Stop trying to be ADA compliant. Be committed to the spirit of why it was written.

43:52 We gave you a ramp and a button — the gap between entry and true belonging

45:41 How to interact with disabled people: humor, curiosity, and the no-BS detector

47:32 Learning by osmosis — hang out in the rooms where this is the work

49:34 The exhaustion of managing other people's awkwardness — and when enough is enough

51:19 Practical tips for talking to someone in a wheelchair: eye level, space, and just asking

53:39 "How would you want me to describe you to someone else?" — restoring dignity and agency with one question

55:09 Talk to the disabled person, not over them to their caregiver

56:03 The memoir Within My Spokes: who it's for and what Jenna wanted to put in the world

58:46 Family reactions, vulnerable stories, and the tapestry of interconnection

1:00:36 Why she wrote it: 5,000 coffees vs. 500 — the book as the fastest way to get real

1:01:30 Final invitation: take inventory of who you surround yourself with — and prepare

1:04:25 Where to find Jenna and Above and Beyond with You

 

Resources Mentioned

Above and Beyond with You: https://www.aboveandbeyondwithu.org/

Jenna's book — subtitle: A Tapestry of Pain, Growth and Freedom. Available via the website.