Our Stories Video Completed.mov

CLARE KILLY: Hello, welcome to our Stories 'Reclaiming Power', a storytelling series hosted by Disability Lead. My name is Clare Killy, and I'm the education and learning services manager at Disability Lead. I use she/her pronouns, and I'm a white woman with curly brown and gray hair, wearing a gray sweater and sitting in front of a blurred background. Today's program includes ASL interpretation and CART or real-time captions. You can access captions directly in Zoom by clicking the Show Captions icon at the bottom of your screen or you can utilize the stream text link in the chat if you prefer to view captions in a separate browser. If you have questions or require technical support, please send a direct chat message to disability... to dis lead support. Excuse me. This program is being recorded and will be shared publicly after the event. Lastly, while the chat is set for messaging hosts and panelists only, we encourage you to utilize the reactions icon at the bottom of your screen throughout the program to show support and encouragement for our storytellers today.

We are so pleased to welcome you for one of our most beloved programs, storytelling with Disability Lead Members. We are fortunate to have three incredible and talented members featured today Sidney Barta, Guadalupe Pinzon, and Allaina Humphreys. I want to thank each of them for their willingness to share their personal experiences with us. Finding the right words requires labor and vulnerability, but the results can be a catalyst for change. Please note that some of the content explored in the featured stories may be triggering for some, including topics of neglect, traumatic injury, and verbal and sexual abuse. We encourage you all to take care of yourselves in the ways that work for you. We'll get to these powerful stories in just a moment. But first, I'd like to invite Disability Leads CEO Emily Blum to join me on screen to share some reflections. Welcome, Emily.

EMILY BLUM: Good afternoon, everyone. My name is Emily Blum, and I'm the CEO of Disability Lead. I use she/her pronouns, and I'm a white woman with brown hair. I'm wearing glasses and a brown sweater, and my virtual background is blurred. It's really wonderful to be with all of you here today and to share space for something that feels both intimate and powerful. Stories from our community about what shaped us, pushed us, and ultimately made us the leaders we are today. Before we begin, I wanna acknowledge someone whose impact is threaded through everything we're doing at today's event. Many of us have been grieving the passing of Alice Wong. Alice shaped the Disability Justice Movement in profound ways. She shaped me and she shaped the work we do at Disability Lead. Some of you may remember that we hosted her several years ago for our Disability Power series, and even through a screen, her clarity and brilliance filled the room.

Alice helped so many of us understand that storytelling is in a soft skill. It is a force. It's culture making, it's power building. And she told us, and I quote, "Storytelling is a chance to know ourselves better, to really question who we are, where we've been and who we want to be." That line has been echoing for me these past days. Alice believed deeply in disabled people and in the power of our stories to reveal truth, to shift understanding and make futures possible. Her final message, which many of you have seen, was full of courage, humor, honesty and an unwavering belief that our stories matter. She left us with a charge to keep imagining, keep pushing, keep creating the future she knew we deserved, and that's exactly why we are here today. This event isn't just about three individual stories as remarkable as they are. It's about what becomes possible when disabled people tell the truth about our lives on our own terms.

When we speak from our lived wisdom instead of hiding it. When we allow our disability experiences to sit at the center of our leadership rather than at the margins. At Disability Lead, we know these stories are catalysts. They reshape narratives inside workplaces. They spark new conversations and civic spaces. They inspire other disabled people to step forward and see themselves as leaders. So as you listen, I hope you hear more than challenges overcome. I hope you hear leadership formed, community found, systems questioned, and possibilities expanded. Alice Wong showed us what it looks like to tell stories with courage, humor, and deep, deep love. And in her honor, we are here to keep that flame going. My hope is that the future she imagined feels a little closer every time we choose together like this. Thank you for being here. Thank you for honoring these stories, and thank you to Sydney, Guadalupe and Allaina, our three storytellers, for sharing pieces of themselves. Let's begin.

CLARE KILLY: Thank you so much, Emily. At this time, I am pleased to welcome our first storyteller, Sydney Barta, to join me on screen.

SYDNEY BARTA: My name is Sydney Barta. I am a white person with short brown hair. I have glasses, and I'm wearing a sweater with a geometric pattern that I would like to believe belong to an 80-year-old man before I thrifted it. This is my story. "The tunnels of the arena were cold, both in temperature and color. The gray concrete felt drab compared to the excitement buzzing in my ears and chest. The graduates were carefully arranged in alphabetical order, and there were 100 variations of the same conversation being heard. Is my hair sticking out in the back? What side does this tassel go on? Do I have lipstick in my teeth? In a few moments, hundreds of undergraduate students would be ushered to our seats for the ceremony. 10,000 people would greet us with cheers and noisemakers, which would undoubtedly be confiscated by event security. I wasn't concerning myself at all with the way I looked. I was busy repeating the same simple mantra, do not fall. Defy gravity. Sure, that's easy for Elphaba. For me, the task is a bit more daunting.

I have spastic cerebral palsy, which means I also have the uncanny ability to find every rock, every crack, every hole in the floor with my feet. Smooth surfaces aren't exempt either. I actually consider them to be the villain of this tale because they are so unsuspecting. I was able to maintain pace with my group at first. Surprisingly, my legs felt as though they were moving independently of my body. I'm thankful to the adrenaline for taking over and allowing my brain to temporarily exit the building. As the opening from the tunnel finally came into view so did the entirety of the arena. The section of folding chairs we were instructed to find our way to seemed miniature and felt like they were a world away in distance. For all I knew, this was the endless hallway from the shining. Suddenly my mind had found itself connected to my body again. Panic quickly set in just as I noticed the floor transition from raw cement to the slick basketball court. Gravity. My outstretched hands tried desperately to grasp for someone or something.

Those in line in front of me had advanced too far, though. Did the excitement of the onlookers make them convert to super speed? The ground found its way to me swiftly. Some students behind me rushed to step over my limbs, which flung themselves in separate directions. What I was afraid of had come to fruition. Maybe in repeating my mantra, I had inadvertently manifested my own fate. I knew I had mere seconds before 10,000 pairs of eyes would see me sprawled out. As I physically and mentally scrambled to figure out how to get myself out of this Lion King stampede scene, I felt a set of hands under each of my arms. Two guys double my size, set me on my feet, and disappeared back in line before I could even make note of their faces. An exasperated sigh (SIGHS) flew from my lips as I checked for my flub to be broadcasted on the jumbotron.

Over a year later, my body still shuddered as I recalled that milestone turned nightmare. I was preparing to graduate again, this time with a master's degree in social work. It was my last opportunity to take the stage as my favorite role successful student. I was prepared not to make this time a repeat performance. I spent weeks prior to commencement coordinating with the university to be allowed an escort. You would think orchestrating my own assurance that I would make it safely to my seat and across the platform would be simple. Instead, it was as though I had requested top secret clearances at the Pentagon. I had to first confer in person with the provost, send a slew of emails to the coordinators of the ceremony, and offer the Dean a kidney. Just kidding about that last one, maybe. The powers that be finally agreed to accommodate this need. Even better, I was given the choice of who would accompany me.

Without hesitation, I could clearly envision who would be standing close by as I added three new letters to my name - dear old dad. The genesis of this appeal was initially centered around my comfort. Then, as I was granted the ability to choose who to share the moment with, it transformed into something even more necessary to me. As my father's youngest baby and the first in my family to obtain a higher education degree. This must be akin to how brides feel as their dads walk them down the aisle. The tradition symbolizes a father bringing their kid into the next phase of their adult life. I was uncertain if my future would even hold a wedding. To me, the promise of a fulfilling life wouldn't be found only in a partner. I had discovered it in textbooks, in the resilient smiles of children, and in the thankfulness of caregivers when I met them at their breaking points. This would be my big day. My turn to look into the eyes of those who raised me and say, "I've arrived at the place we only dreamed of. I'm going to be OK."

On the day of graduation, my mom watched as I stood readying myself in the bathroom mirror. She squeezed my hand three times and then I love you, fashion. I was the least girly person to ever exist. Yet the jewelry she gave me to wear couldn't have been more me. A thin chain, all black bracelet with tiny beads and a necklace to match bestowed upon me the bit of grace I needed for what was ahead. I found myself at the arena for the final time. Dad held the heavy, wide doors open for me as I joined my cohort in the staging area. I was already donning my cap and gown with gold honor sash. Ever the snazzy dresser, my dad had chosen a powder blue button down shirt for the occasion. We patiently waited to be provided with instructions, beaming in selfies and cracking corny jokes. Our joy screeched to a halt as a burly, frowning man approached. He notified us this space was restricted. No friends or relatives allowed. I explained my physical condition, although I shouldn't have had to, and informed him my dad had been approved to escort me.

The man guffawed and shook his head. I wasn't told about any of that. We can get someone to walk you as if I were a dog instead of a human. He has to leave the area. His demand was quick, like a dagger thrust into a beating heart during battle. Then this bearer of bad news gripped a cracked clipboard and walked across the room to bother someone else. Angry tears began to well up. I opened my mouth to defiantly object as though the matter were up for discussion. My dad has always been a level headed guy. His factory settings are calm and collected in stark contrast. I began to sob out of frustration. Dad held my shoulders to steady me. Look, you can't go over there at 75 miles an hour. I know you want to, but that won't change what's happening. You've had decisions made for you and so many things taken from you over the years. Don't let this be one more thing. Today you get a master's degree.

You did that, and I'll be watching you, just as proud from the stands. As I digested his words, dad obliged the Grim Reaper and made his way to sit with the rest of my loved ones. I later stood tall with the assistance of a stranger, and crossed the platform to shake hands with members of university administration. Flashbulbs and stage lights consumed my vision. I squinted into the darkness of the audience, trying to catch a glimpse of the two faces that matter most. Instead of thinking about what could have been, I silently hummed a tune from ABBA. I won't feel blue like I always do, 'cause somewhere in the crowd there's you. According to the history books from that date, let the record reflect. I did not falter. I was not just a person with a disability. I'm not even remembered as someone who cried. I became Sidney Aaron Barta, MSW." Thank you.

CLARE KILLY: At this time, I'm pleased to welcome our next storyteller to join us on screen, Guadalupe Pinzon. Welcome, Guadalupe. We look forward to hearing your story.

GUADALUPE PINZON: Good afternoon. My name is Guadalupe Pinzon. I use she/her pronouns, and I'm a Latina woman on screen, and my background is blurred. And this is my story. "I remember being at the far end of the playground, watching the last students head inside. I tried moving through the snow, but my wheels couldn't push through. What stayed with me wasn't the moment itself. It was the feeling of being left behind again. The only thought in my head was, why does this keep happening? Experiences like that weren't rare. I was excluded from the playground and other school activities. My mobility aids and the different things my disability comes with were mocked. When I reported it, adults brushed it off. Slowly, I learned the truth no child should have to know. Being a kid didn't guarantee protection. But it hadn't always been that way. There was a time when school meant safety. Well, Adult Learning Center was the first place where I felt understood without needing to explain myself.

In her kindergarten graduation day, when all the girls were supposed to wear white dresses, my classmates twirled in excitement. I stayed quiet knowing my parents couldn't afford one for me. A few days later, the school secretary called my mom and asked if she could buy one for me. On the day of the ceremony, she helped me into it, smoothing the fabric with such care that it felt like she was handing me a permission to shine. That moment still feels warm, a reminder that support doesn't need to be loud, to be life changing. But soon, life shifted again. Somewhere in the back of my head, my mom's words echoed. We're moving somewhere safer, somewhere better. I remember the relief on my parents faces. Like they'd finally done the right thing. Maybe they had. The streets were quiet. The houses looked new. But sometimes the places that look safe aren't the ones that feel safe. Better can still break you in ways you don't expect. A kind of harm that doesn't leave bruises but still leaves marks.

At my new school, belonging no longer came automatically. Many teachers were verbally abusive, which made every question feel risky. At lunch, when my aide would never show up, Steph insisted I navigate alone in the name of independence, a decision that felt more like neglect than support. The nurse's office was no different. I experienced sexual boundary violations while receiving care. When I reported it, I was dismissed. After that, I learned to wait until I got home for help. Those memories stayed with me. Years later, in college, I had an assignment to observe a classroom for students with disabilities. When I posted about it online, my former art teacher from Wilma Rudolph wrote, "How about coming to Wilma?" While waiting for my volunteer form to be approved, I remembered I had typed everything I experienced after leaving Wilma Rudolph long before I ever imagined returning. I felt it was time to share my story, to raise awareness. So I emailed it to my former art teacher and gave consent to share it with the school staff if she wanted.

The day finally came. I barely slept, I was too excited. When I rolled into the office on the front desk, was my story printed out with the picture of me from my Wilma Rudolph days. On the page. Seeing her there. The little girl who had always been supported and valued reminded me of what needed to be reclaimed. I visited the classrooms, reconnected with old teachers, and shared my story with staff who hadn't read it yet. Jaws dropped. Some were visibly angry. Others shook their heads in disbelief. A few spoke up immediately about how the situation should have been handled. For the first time, I felt the validation and safety I had launched for. Confirmation the younger me hadn't been wrong or overreacting. The people who once helped me belong encouraged me to keep showing up and learning, and invited me to join the Parent Advisory Committee to support families and their kids. And in case you're wondering, I got an A on that assignment.

In college, the coordinator of the students accommodations always made sure my needs were understood and honored. She took the time to explain assignments in ways that matched my learning style. Once I finally had the support I needed, everything shifted. My grades rose and I earned my first set of A's. Coming back to Wilma Rudolph Learning Center reminded me I was never the problem. The problem was the system that chose not to see me. My experiences drive me to make sure no child is unseen or unheard. I'm prepared to sit in IEP meetings as an IEP parent surrogate. Leadership, to me, means using the truth that once broke me to rebuild my path and pave the way for the next generation. And if that isn't freedom, I don't know what is. Thank you.

CLARE KILLY: That's Claire speaking. Thank you so much, Guadalupe. Amazing job. At this time, I would like to invite our final storyteller to join me on screen, Allaina Humphreys. Allaina, welcome. We look forward to hearing your story.

ALLAINA HUMPHREYS: Good afternoon. My name is Allaina Humphreys, and I use she/her pronouns. I'm a light-skinned woman with short, asymmetrical brown and blond hair. I'm wearing a black top, and I have a dark, blurred background. Though not visible on camera, I use a manual wheelchair with rainbow colored spokes. And this is my story. "One moment, I was joking with my fellow gymnasts in a sunny summer world filled with chalk dust, joyful athleticism, blue mats, and ponytails on my first day of camp. The next went nearly as planned. I spun once, almost twice, and stopped rather suddenly, upside down. As soon as I opened my eyes, I knew something had changed. When I broke my neck that day, training for nationals in gymnastics at just 15, that failed flip flipped my life upside down. But I got lucky when I ultimately stuck the landing on the pediatric floor of the rehab hospital. Down that green hallway, everything was smaller on purpose. Little gowns on lower hooks, crayons and blocks on tiny tables, stickers stuck at knee level because that's where the good decisions get made.

The nurses called us Sweetie in Champ in the same breath. The world came down to meet us. My roommate was just three years old with burns over two-thirds of her tiny body. She chose purple for her full-body compression suit because she loved Barney, not because it stopped the pain, but because purple was joy. And joy was non-negotiable. At night, I would have someone snuggle her against me, my arms barely moving, hers wrapped in careful layers, and I would read while someone held the book or I'd sing. I learned to talk like Mickey Mouse just to make her laugh. The sound of it was a bell, clear, ridiculous, and alive. Those kids taught me a rule adults forget. Always look for the next good thing, the next sticker, the next story, the next reason to giggle, even if your body is bandaged and the IV pole squeaks. Every day on that floor someone hurt, and every day somebody still asks, "What are we playing?" That's where I learned my body's new altitude.

Most people live at eye level. I live at chair height. It's surprising what you see from here. You see shoelaces before faces. You see Cheerios under hospital beds and Legos in waiting room chairs. You see the disturbances in the dust at the bottom edges of poster frames, where tiny fingers have explored the vibrant colors and adorable illustrations. You notice how a nurse crouches without thinking and how a doctor does not. At chair height, kids find me. They lock eyes easily because we share a horizon. Their arms reach exactly where mine do. The best hugs in my life begin without choreography. Sometimes they topple into my lap, and we become a pile of giggles and questions. Is your chair fast? Can you do a wheelie? Why do you wear those gloves? How did you make your wheels rainbow? Children are scientists with microscopes shaped like hands, exploring and examining everything around them. They take you in, and then they choose to take you on. Because I've met them first as teammates on a pediatric floor. Because a three-year-old in a purple suit trusted me to sing.

I know the language. I can squeak in Mickey's voice. I can share the stuffed bunny on my keychain that says, I love you at the touch of a button. I can say, "Hey, you want to help me be the boss of this elevator and watch a small person transform into a conductor?" I carried this new angle out of the hospital and into my life like a camera I couldn't put down. The frame changed. The world didn't. Down here, I noticed wonder is louder. I'm closer to lightning bugs than streetlights. Closer to a dandelion than the stop sign above it. Butterflies fly past my nose like confetti, and a raindrop on a railing is a magnifying glass, inviting me to change perspective through its lens. From down here, you don't just look up at skyscrapers and ceilings, you experience that distance, like the hush in a cathedral, a whisper that these spaces were built for someone else's stride. When people say, "It's just one step," I can feel the weight of that word, 'just'. how it hangs in the air with a gravity only those on wheels can feel.

An inch lip at a doorway feels like someone has turned my welcome into ask for permission. The bathroom sink, mounted too high, makes washing my hands an act of choreography when it should be an act of hygiene. A curb without a cut is simply a wall, a boundary that says where I cannot go. I navigate not by the lines of a map, but by the contours of civic engineering and the topography of access. So in my bag of tools, I keep a mental measuring tape, a keen eye out for cracks, a smile to engage, the helpful nature of a passerby, and the kind of stubbornness I learned from a child who chose to circumvent painful moments with a purple suit. I laid that measuring tape against thresholds and doorways, against festivals and attitudes. I leave notes and impressions that say, 'small changes make a bigger life'. I write emails. I show up to meetings where decisions are made at someone else's eye level. Isn't that expensive? They ask. Do you know it's expensive? I wanna reply, a life organized around a world that doesn't make room for you.

I tell them about the moms who missed recitals because the accessible parking vanished under a sponsor tent. About the veteran who watches concerts from the sidewalk 'cause the risers forgot a ramp. About the job interview you don't get to because your bus stop is a puddle, or a lift failed to work. I tell them how a child hugged me in a grocery store 'cause I was the first grown-up whose face didn't float above them in public spaces, and what that meant to both of us. I ask them to do an experiment with me. Lower your gaze, I say. Look. Lower, see more. See the handprints halfway down the glass where kids reach out to say hello. See the delivery drivers, Dolly. The same physics is my wheels. And imagine making a sharp turn through that door, or bumping over the broken curb or up a step. See the sign that says accessible entrance around back. Like dignity is a service alley. I'm not asking them to feel bad. I'm inviting them to feel different because chair height isn't just a measurement, it's a posture.

It is the choice to meet people where they are and then build from there. It's a public art project that only exists if we all pick up a brush. It's how I survived the most challenging year in my young life. By learning to find what was still beautiful at the level where I now lived. So when a town hall microphone blinks awake, and a row of officials looks down from that dais, I bring with me every sticker, every giggle, every lesson in proximity. I say I live at chair height, and I'm here to tell you what it looks like from down here. It looks like brilliance you're missing. It looks like neighborhoods where birthday parties include everyone effortlessly. It looks like a hundred tiny fixes that add up to a full life of dignity and freedom. Sometimes after I speak, someone stops me in the hallway and says, You know, I never thought about it that way." That sentence always lands like the first page of a book. I can't wait to read. Those words mean that the story is no longer just mine. It belongs to the listener now, too, woven into the choices they will make and the places they will change.

For just a moment, our perspectives overlapped, and in that overlap, possibility took root. Look lower. See more. See the ladybug on the leaf as you walk by. See those two inches of needless step that keep the employee outside and the decision-making within. See the customer who goes home because they can't get a parking place. See the design choices that decide who belongs, and then see how quickly a town can change shape when the people who build it shift their perspective. You never know when you or someone you love might find yourself living at this level. So let's build as if every child will inherit the choices we make, every curve, every ramp, every welcome or rejection embedded in the fabric of our community. Let's design a society where curiosity is natural, joy is non-negotiable, and everyone can take part.

If you remember nothing else, remember this, we are all somebody's child. At our best, we are all just looking for the next good thing, the next fun thing. The next person to love out loud. Let's build a world for that version of us. Build every doorway wide enough for wonder. You know that failed flip didn't end my story, it just changed the view. From this height, I can see exactly what still needs building. That's why I'm asking all of you to make eye level the height of human connection. Because access and equity aren't extras. They aren't favors, and they should never be a burden. They take intentionnd they are how we honor every person's place in this world we share. Thank you.

CLARE KILLY: You know what, Allaina? I'm going to invite you to stay on screen with me. And I'd like to invite Guadalupe and Sydney to join us on screen again as well. We'll take a moment to have all of you with us. And I just want to thank you sincerely. Sydney, Guadalupe, Allaina, the audience I know is gonna tell you how much they appreciate you right now as well, with all these emojis flowing in. We appreciate your vulnerability and authenticity. All three of these folks are current fellows of our 2025 Institute. So I personally want to say deeply and sincerely, I am so prou : d of all three of you. Disability Lead is proud to have you as members of the network. Please know that someone in this audience today has been changed by your story. Please stay with me on screen for the closing remarks and to continue to see the celebration for you. This storytelling event, for all of you to know, is one of the many opportunities that we offer to our members to develop their leadership skills and elevate their voices.

If you're a person with a disability who lives in Chicago or southwestern Pennsylvania regions, and you would like to be a member too, check out our website for more information. Thank you to our additional members, Techie Lomnicki and Megan Dougherty, for their coaching, support, and expertise in helping our storytellers prepare their stories today. Thank you to our Access Providers, Lisa Johnston providing CART, and AI Media providing ASL. Today's gathering is about holding people you don't know in your hearts and making room for their voices and their needs. This is the only way we will achieve the equitable and inclusive communities each of us yearns for. We're pleased to give you back a few minutes of time today, but we hope you'll stay connected with us @ disabilitylead. org and register now for upcoming programs. Next month is the continuation of our Disability Power Series on December 16th. Not only will we hear from the fabulous doctor Mary MJ McConnor, but we'll also be celebrating our 2025 class of fellows and announcing for the first time our brand new classes of 2026 fellows for both the Chicago region and for the first time ever, the Southwestern Pennsylvania region.

And registration is now open for our third annual Disability Leadership Summit, taking place on February 24th and 25th of 2026. Check out the link in the chat to learn about our incredible lineup and access a 20% off Early Bird discount if you register before the end of the year. Lastly, please help us continue to provide high quality programing by offering your input on today's program using the feedback form linked in the chat. A final thank you to our storytellers. We appreciate you. We celebrate you. Thank you so much. And thank you to the audience for joining us, and I hope everyone has a wonderful afternoon and a safe and happy holiday.

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