Wheels On Down the Road

Tag: Accessibility & Inclusion

Topics on designing environments and systems that accommodate diverse needs and promote social inclusion.

  • Lost in Translation on the Bus

    Lost in Translation on the Bus

    The other night, I was waiting for the Minnesota United vs. Portland Timbers match to start on Apple TV. The screen hadn’t gone live yet, so there was the usual pregame placeholder: “The game will begin shortly.” Nothing revolutionary—except it wasn’t just in English. It was in multiple languages.

    Just a quiet, rotating message that said: “We see you. You’re included.”

    And it made me think—why don’t we do this everywhere?

    A Bus Ride I Won’t Forget

    Last week, I was riding the bus through Minneapolis. I noticed a woman with two young children. They were struggling to understand why the bus wasn’t stopping at the location she expected. She looked confused and increasingly distressed.

    From what I could tell, she didn’t speak English, or at least not fluently. She clearly didn’t understand the driver’s responses or the automated announcements. Her kids looked just as lost.

    This wasn’t a case of someone zoning out and missing their stop. This was a breakdown in communication—one that could’ve been avoided if our transit system acknowledged the city’s rich multilingual population.

    Minneapolis Isn’t Monolingual. So Why Is Our Transit System?

    Minneapolis is home to large Somali, Hmong, Spanish-speaking, Oromo, and Amharic communities. And yet Metro Transit, like most U.S. public transit systems, communicates primarily in English.

    Let’s be honest—who is that really serving?

    Apple TV can take the time to translate “the game will begin shortly” into multiple languages. They do this before a soccer match. Then surely a public transit system can do the same. It should help people trying to get to work, school, the grocery store—or just home.

    And it’s not like this is uncharted territory. In fact, transit systems around the world are already doing this better than we are.

    How It’s Done Around the World

    When I visited Canada, every single transit announcement I heard was in both English and French. Sure, those are the country’s official languages, but it’s still a prime example of how baked-in language access can be. It sends the message: You’re not an afterthought.

    Japan took it a step further leading up to the Tokyo Olympics. According to Kyodo News train stations across the country added signage and announcements In Japanese, English, Chinese, and Korean. This was not just for tourists, but for a globally connected population. They understood that access means everyone can navigate independently.

    And it’s not limited to subways. Airports across the world, from Europe to Asia, are far more likely to offer clear signage. They often provide multilingual signage compared to most American transit systems. That’s because in many places, multilingual infrastructure isn’t a novelty it’s the standard.

    This kind of inclusion isn’t just functional—it’s intentional. According to Modulex, signage is more than just instruction; it’s a message of belonging. And if the signs and announcements only speak one language, what message are we sending? the dominant language. So they build systems that reflect reality instead of ignoring it.

    Why Aren’t We Doing This?

    There are a few reasons you’ll hear tossed around:

    • Budget constraints. (“We can’t afford that.”)
    • Technical limitations. (“Our announcement system is too old.”)
    • Thinly veiled xenophobia. (“If you’re here, you should speak English.”)

    But let’s be real: those are excuses, not explanations. If we can add WiFi to buses, we can update a few audio files. If we can add QR codes to shelters, we can update digital displays.

    Multilingual signage and communication don’t just make things easier—they build trust. As House of Signs puts it, these tools “break barriers and bridge cultures.” They create spaces that feel safer. These spaces become more welcoming to everyone who uses them. trust. If people don’t feel seen or understood, they’re less likely to rely on a system that doesn’t work for them.

    What Needs to Change

    Here’s what Metro Transit—and any transit system—could start doing tomorrow:

    • Add bilingual announcements (English + Spanish) as the baseline.
    • Expand to include Somali, Hmong, and other locally relevant languages.
    • Use digital signage to rotate announcements visually in multiple languages.
    • Work with community partners to co-create solutions that work for real people not theoretical riders in a planning spreadsheet.

    Language Access Isn’t a Bonus It’s a Right

    That mom on the bus didn’t need a translator or a heroic bystander. She needed a system that saw her coming and made space for her to get where she was going.

    If we truly want to be a city that works for everyone, then we must include everyone. This includes the languages they speak, read, and understand.

    Let’s stop pretending that monolingual transit is good enough. It isn’t. We can improve. The first step might be as simple as saying, “The next stop is Lake Street…” in more than one language.

    Sources / Further Reading:

  • When the Seats Are Gone Before We Even Have a Chance: The Quiet Battle for ADA Accessibility at Concerts

    When the Seats Are Gone Before We Even Have a Chance: The Quiet Battle for ADA Accessibility at Concerts

    An article in the Star Tribune debated whether the 2025 Minnesota State Fair Grandstand lineup is “subpar” or just misunderstood. It had me thinking, but probably not in the way the author intended. The article focused on whether the lineup lives up to the musical reputation of the Fair, and honestly? I get the debate. Would I love to see a tier-one, stadium-filling act take the stage? Absolutely. But let’s be real—the Minnesota State Fair isn’t Live Nation. They’re not printing money behind the corn dog stand.

    This is a community-rooted event trying to appeal to a wide range of people with limited resources. And for what it’s worth, I think they’re doing a solid job. Minnesota is a musically rich state. It is home to Prince, Bob Dylan, and a thriving local scene. We still attract well-known, respected artists, which says a lot about our cultural pull.

    But while the debate rages about whether the lineup is exciting enough, I’m sitting here wrestling with a different question:

    Why can’t I even get in the door?

    This year, there was a show I was eagerly anticipating. It was Melissa Etheridge and the Indigo Girls. It sold out of ADA seating almost immediately. And when I say “immediately,” I mean lightning fast. No procrastination, no dragging my feet—I was there. I tried. But I still missed out.

    And this isn’t a one-time glitch. It happens again and again. If you’re a disabled person, trying to enjoy live music presents challenges. It often feels like your odds of getting a ticket are slim. In fact, it feels like they are almost none. And no one seems to be talking about it.

    Accessibility by the Numbers

    Let’s put it in perspective:

    • 1 in 4 Americans (26%) lives with a disability. (CDC)
    • Yet at many concert venues, fewer than 1–2% of seats are reserved as accessible.
    • A 2017 Government Accountability Office (GAO) report found that ADA ticket options are frequently resold. Venues rarely monitor whether those seats are being used appropriately. They also rarely check if the people using them actually need them.
    • Resale platforms (like StubHub or SeatGeek) generally do not verify disability status when ADA tickets are flipped. This creates a gray market. It further restricts legitimate access.

    ADA seats often disappear in the first few minutes of availability. This makes us wonder:

    • Were they sold to people with actual accessibility needs?
    • Were they grabbed by opportunists hoping to make a profit?

    The Bigger Problem

    It’s not just about fairness. It’s about dignity, equity, and inclusion. Being able to attend a concert—or a sporting event, or a theater performance—isn’t just entertainment. It’s part of participating in culture.

    And yet, the system is opaque at best, and exclusionary at worst. Many ticketing sites bury their ADA options behind unclear menus. Some require calling customer service (who has time to wait on hold for 45 minutes for one seat?). Others simply mark the tickets as “unavailable” without explanation. It’s frustrating. It’s disheartening. And it’s deeply isolating.

    What Needs to Change?

    Here’s what we should be asking of venues, ticketing platforms, and organizers:

    • Expand ADA seating capacity to better reflect the actual percentage of disabled people in the population.
    • Increase transparency around how many accessible seats are available and when they sell out.
    • Implement safeguards to reduce fraud and scalping—without violating privacy or dignity.
    • Design for inclusion from the beginning instead of retrofitting access as a checkbox.
    • Include disabled voices in planning and policy. Nothing about us, without us.

    What You Can Do:

    1. Observe and speak up. Notice how venues handle accessibility and don’t be afraid to call out poor design or treatment.
    2. Contact your local venues and fair organizers—let them know that ADA access isn’t optional.
    3. Support policy reform. Push for laws that improve ADA compliance and penalize misuse or scalping of accessible tickets.
    4. Amplify disabled voices. Share posts like this, read lived experiences, and help spread the word.

    Let’s Talk About It:

    I’d love to hear from others who’ve experienced this. Have you tried to get ADA tickets and hit a brick wall? Have you seen accessible seats taken by people who didn’t need them? What would you change?

    Drop your thoughts in the comments—let’s make this a conversation.

    Because live music should be for everyone. And that means we need to design systems that reflect that truth.

    Sources:

  • Writing What Moves Me

    Writing What Moves Me

    This was supposed to be just a Facebook post…

    I didn’t plan on writing this post.

    It started as a quiet, reflective moment. You realize just how much you’ve been writing lately. You start wondering why. Not just why you write, but why certain things strike that spark in the first place. Lately, it’s been the little things: a headline, a thought, an unexpected experience.

    Sometimes it’s something I’ve been chewing on for a while. Sometimes, it’s something that hits me in the moment. Either way, it always starts with curiosity and ends with a need to put it into words.

    From Flags to Elevators: Finding Meaning in the Everyday

    Last weekend, I read an article in the Star Tribune. It was about how some Minnesota cities are choosing not to fly the new state flag. That small decision triggered a lot of big questions for me: Why this flag? Why now? And why are local governments opting out? That led me to explore Minnesota’s flag history. More importantly, it prompted me to consider what symbols truly mean to the communities they are meant to represent.

     Flying Forward: Let’s Talk About the Flag Controversy

    During the same reading session, I came across another article. This one was about Elon Musk floating the idea of starting a third political party. Will he actually do it? I doubt it. But it opened up a much more interesting rabbit hole: what could a serious third party mean for the U.S.? Have we really been a two-party country forever? (Spoiler: not exactly.) I knew it wasn’t the post designed for clicks, but I wrote it anyway. Because it made me think.

    Not a Fan, Like the Plan

    Then came something a lot more personal. Jason got stuck in our apartment building elevator. In the basement. No way to get out. No easy way to communicate. That moment shook me, and not just because of the immediate concern for the person I love. I realized how fragile safety is when systems fail. It is easy for someone to be literally and metaphorically trapped without a voice.

    Trapped Without a Voice

    Time, Connection, and the Quiet Things

    A few days later, it hit me that the week was already flying by. I blinked, and it was suddenly Friday. When I was younger, time felt like it moved through molasses. These days, it barrels ahead like it’s trying to break a land speed record. It’s unsettling. But also a reminder: if we don’t stop and notice our days, we miss them completely.

    The Speed of Time

    And then there was my neighbor, John. I hadn’t seen him in a while, but I’d been thinking about him just the day before. He’s in his nineties. He is still sharp. He still tinkers with classic cars. He still carries that calm, measured way that reminds me so much of my grandfather. There’s a quiet connection there, the kind you can’t explain but feel all the same. It reminded me how relationships, even the subtle ones, shape us.

    A Quiet Reminder

    So… Why Do I Write?

    Because I need to.

    Not for clicks. Not for likes. Not to chase trends. I write because something stirs in me. The only way I know how to make sense of it is by turning it into a story. A question. A shared moment.

    I write to reflect. To connect. To offer something real.

    If even one person reads what I’ve written and feels seen, my purpose is fulfilled. If they become curious or feel a little less alone, I’ve accomplished what I came here to do.

    What about you?

    What little things have made you stop and think lately? What everyday moments have sparked something deeper?

    I’d love to hear.

  • Trapped Without a Voice: Elevator Safety for DeafBlind Residents

    Trapped Without a Voice: Elevator Safety for DeafBlind Residents

    Surley and I had quite the eventful morning.

    We started off with our usual walk through downtown Minneapolis and along the Loring Greenway. It was a beautiful day. We stretched our legs a little further and wandered through Loring Park. It looks strikingly different without the usual Pride festivities filling every inch.

    Then we crossed the Irene Hixon Whitney pedestrian bridge over Interstate I-94, Hennepin Avenue, and Lyndale Avenue. I stopped to snap a picture of Surley, who was looking particularly dashing in the breeze.

    Surley on the bridge.

    We entered the Sculpture Garden after rolling off of the bridge. This brought on a wave of memories. I remembered the time my Aunt Kate took my sister and me there one summer during a visit. She capped the trip off with Sebastian Joe’s ice cream, which triggered an instant craving. Nostalgia always knows where your sweet tooth lives.

    It had been a few years since I’d been there so I looked up the address on their website. I discovered they had affogato on the menu, espresso over ice cream, and that was it. We were going.

    After a few minor detours thanks to road construction in the area, classic Minnesota summer, we made it. I ordered affogato with chocolate peanut butter ice cream. Unexpectedly bold and delightful. Then I spotted the chocolate chip cookies and, well, you know how that goes.

    Chocolate, peanut butter, espresso is a deliciously dangerous combination.

    Cue: emergency mode.

    So there I was cookie in one hand, affogato in the other, soaking in the calm of a summer morning…

    …and then my phone buzzed.

    “help i am stuck in elevator”

    At first I was a little confused. It was random and out of the blue. I sent a follow up message seeking clarification. When I didn’t get a response, I sent another message. After not hearing back for about five minutes, I started to get worried. This was outside of his normal behavior.

    Jason managed to send another message with a few more details. He was stuck between the basement and first floor of our apartment building, where cell signal was weak. The elevator’s emergency call box was no help—unsurprising, given that he’s Deaf and has low vision.

    He also sent a brief video. From that, I called 911 and explained the situation: a Deaf and low vision person was trapped in an elevator. I let them know the office was closed and no one was answering the phone. Thanks to the video, I could tell the dispatcher exactly which elevator he was in and where it had stopped.

    Quick PSA: Many counties in Minnesota, including Hennepin, support text-to-911. It’s a good choice for folks who can’t speak or hear during emergencies. But not everyone knows it’s available, and it doesn’t always work well underground.

    Once help was on the way, I woke Surley from his nap on the cool tile floor and jogged home.

    Surley napping on the cool tile floor at Sebastian Joe’s.

    Poor Surley, tongue lolling and tail wagging, worked hard to keep pace. He trotted beside me as we walked home at mach 10 like a champ.

    By the time we returned, Jason had just gotten out with help from the fire department. He was headed to the store with a friend. He was okay: hot, sweaty, but safe.

    Afterwards

    Later, we sat down. We talked through everything that had happened. The more I heard, the more disturbing the story became.

    Jason had taken the elevator down to grab some things from his storage unit. When it stopped in the basement, the doors didn’t open. He tried hitting the “door open” button. Nothing. He attempted to go back up to the first floor. He swiped his fob for access to his floor. Still nothing.

    Because of his low vision, he had trouble seeing what floor the elevator thought it was on. There were no audible cues. He pressed the emergency “help” button. He wasn’t sure whether it activated. The indicator was too small and hard to see. He backed up further and got on his knees. Only then was he able to see the blinking red light. He used text-to-speech on his iPhone. He said, “I’m Deaf, stuck in elevator.”

    He also tried live captioning on his phone to transcribe the audio from the speaker. He hoped it would tell him that someone was on the line. No matter where he placed his phone nothing came through clearly enough to be transcribed into words. Even though he is deaf, he can hear static and muffled sounds when using his hearing aids. However, he cannot make out words in detail.

    He stayed surprisingly calm, even though his hands were shaking, which made texting and filming difficult. He immediately noticed somewhat bright yellow light just below the floor display. It was a fire dept override. This reassured him that the fire department was here. It put him at ease that they were working to get him out.

    Eventually, the fire department and an elevator tech arrived and got the doors open. Jason had to step up about a foot to climb out: hot, rattled, and understandably frustrated. But he was, in his own words later, “unfazed.” (Though I think he was being generous with himself.)

    Surley resting in the AC after the day’s events.

    After the dust settled, I spoke with our apartment manager.

    I explained why I called 911. They told me I should’ve left a message on the office line. They assured me they would have responded promptly.

    Now look I get the desire for tenants to follow procedure. But here’s the thing: there was no one in the office. No one answered the phone. The voicemail simply said, “Leave a message for maintenance emergencies.”

    This wasn’t a dripping faucet. A Deaf and low vision resident was stuck in a sealed metal box. There was no clear way for him to call for help. He was starting to overheat. I wasn’t about to wait and hope someone checked their voicemail.

    If I hadn’t answered his text message what would’ve happened? How long would Jason have waited?

    He pushed the “help” button in the elevator. He was using text-to-speech to relay a message. Did the dispatcher realize they were speaking to someone who couldn’t hear them? Was the dispatcher aware of the communication barrier? Did they think it was pressed by accident? Would they have done anything?

    I didn’t want to find out the hard way. So I called 911. And I’d do it again.

    But it raises some real concerns.

    People with disabilities are often left out of emergency planning. Even when the systems are technically in place, they don’t always work when you truly need them. This includes systems like text-to-911 and live captions.

    WWYD (What Would You Do?)

    So, I pose this question to you:

    If you were in my shoes…
    Would you have called 911?
    Would you have left a voicemail and waited?
    Would you have done something else?

    Let me know in the comments. If you live in an apartment building, especially one with older elevators, take a minute. Check what your emergency plan looks like. Talk to your neighbors. Learn your options.

    Because accessibility shouldn’t depend on luck. It shouldn’t hinge on a single person being available to answer a phone. It should be built in — thoughtfully, thoroughly, and proactively.

    Call to Action

    If you didn’t know about text-to-911, now you do. Check your local county’s website to confirm it’s available where you live. Share this post with someone who might not be aware. Accessibility starts with awareness.

    Resources

  • Thoughts in the Woods

    Thoughts in the Woods

    This morning, I started to pack up my camping gear. My friends were still sleeping. I found myself pausing…grateful. I’ve been camping with this same crew of friends for almost four years now.

    From Bare Bones to Built Up

    When I started, I had nothing but a sleeping bag. And honestly? That was intentional. If I had an accident in the night, I wanted my bag to get wet. I didn’t want someone else’s borrowed gear to be affected. Everything else I used back then was borrowed.

    Fast forward to 2025, and now I’ve got a full kit of my own. I’ve grown. I’ve built something. And I’ve done it with the support of some really incredible people.

    The Kind of People You Want Around a Campfire

    You never know how folks will respond when someone needs a little extra help. It might be setting up camp or tearing it down. It could involve navigating uneven ground or just figuring out the best way to sleep without pain.

    This group?

    They’ve been nothing short of amazing. I don’t think I could ask for better camping buddies. If anything, they yell at me for not asking for more help. And every year, I get a little better at asking. I’m a Midwesterner at heart stubborn by nature. But with time, I’m learning.

    Maybe by the end of this life, I’ll ask for help without hesitation. Maybe.

    A Place for Me, A Place for Him

    They’ve also been incredible when it comes to my service dogs.

    I remember the first trip I took with Dempsey. My friends made sure I had the right setup for him. A couple of them brought their dogs too, so we had a three-way dog party around the fire. I’ll never forget that trip. It wasn’t just because the raccoons stole Dempsey’s food. It was also because my friends jumped in without missing a beat. They shared their dogs’ leftover kibble and scrambled extra eggs for breakfast so D wouldn’t go hungry.

    Surley is a bit different. I brought him last spring and it went well, even with some rain though he’s not much for storms.

    This trip, I needed some time away. He spent the weekend with the folks who helped train him to become the incredible service dog he is today. I think it was a good thing for both of us. There will be camping trips where he joins me, and others where he stays behind. But what I know for certain is: when he does come along, this crew will have my back, and his.

    Where Comfort Meets the Campground

    One of my friends, who also uses a manual wheelchair, was in the market for a tent. Naturally, I sang the praises of my Big Agnes Blacktail 3 Hotel Bikepack tent. Fancy name, but it’s been an absolute game-changer. It fits everything I need. I’ve got a picnic blanket on the floor for extra cushion and dog-paw protection. There’s a twin-sized air mattress, room for a Labrador, and my duffel bag. A vestibule comfortably stores a cooler and my chair.

    It’s basically the Cadillac of tents. Imagine if the Cadillac was waterproof and collapsible, designed by someone who truly understands functional camping for disabled folks.

    Anyway, my friend ended up buying the exact same one! Before we packed up camp this morning, I managed to snap a picture of our matching tents. I think we’re officially a tent gang now. Matching vests next?

    Tent twins, engage! Big Agnes buddies for life.

    I’m not sure how many camping trips I’ll squeeze in this year. I’d love to try a solo trip (just me, the tent, and some food), and there are friends I haven’t camped with in over a year that I’d love to reconnect with. Maybe that’ll happen. Maybe not. Life is an adventure. I’m just along for the ride, and I’m lucky to have some amazing people joining me along the way.

  • Every Day, Not Just May: A Reflection on Mental Health Awareness

    Every Day, Not Just May: A Reflection on Mental Health Awareness

    Why We Need More Than a Month

    May is Mental Health Awareness Month. It’s a time when you’ll see posts, ribbons, infographics, and campaigns reminding us to check in on ourselves and others. And don’t get me wrong—that’s important. But mental health isn’t something we should only be aware of one month a year.

    It’s something we should acknowledge, support, and talk about every single day.

    My Mental Health Journey

    Mental health struggles don’t come with a calendar notification. They don’t wait until May to make themselves known. For some of us, they’re lifelong companions—sometimes silent, sometimes loud, sometimes manageable, sometimes utterly overwhelming.

    I’ve been living with anxiety and depression for as long as I can remember. But for years, I didn’t have a name for what I was feeling. I didn’t know that the heaviness, the racing thoughts, and the sudden and intense emotional dips weren’t just “personality quirks.” They were not something to tough out. I finally received the right diagnosis when I became an adult and sought professional help. More importantly, I got the right support. Medication and counseling made a world of difference for me. But even with treatment, mental health isn’t something that just gets “fixed.” It’s something I continue to manage, day by day.

    You Can’t Always See It

    Here’s the thing: you can’t always see it.

    People with mental health challenges often look “fine” on the outside. Smiling. Working. Cracking jokes. Showing up. We become masters of masking. We hide the pain, the fear, and the spiral. Society hasn’t always been kind to people who show those things. But just because someone looks okay doesn’t mean they are.

    Some days, I genuinely feel good. I feel steady, grounded, even joyful. Other days, something as small as a smell can affect me. A song or an old photo may send me down a dark tunnel I wasn’t expecting. It can take everything I have to claw my way back out.

    Coping Isn’t Always Healthy

    And let’s talk about coping mechanisms. I joke about my “coffee addiction”—and yes, my relationship with caffeine is a little… complicated. But beyond the laughs, I’ve also had a much more serious struggle with alcohol. For a while, I used it to cope. To numb. To silence the noise. But through therapy and intentional choices, I’ve worked hard to build a healthier relationship with alcohol. (Still working on the coffee one, though. Baby steps.)

    Why I’m Sharing This

    I’m not sharing this for pity. I’m sharing this because mental health is still so misunderstood, so stigmatized, and so often invisible. I want to be part of normalizing the conversation. Because the more we talk about it, the more we make space for people to feel less alone.

    So if you’re struggling right now—silently or not—please know you’re not alone. You matter. You deserve support. And there’s absolutely no shame in seeking help.

    Mental health awareness doesn’t end when May does.

    It’s an everyday thing. Let’s keep talking.

    Mental Health Resources

    If you or someone you love is struggling with mental health, please know that help is available. You are not alone.

    Emergency Help (24/7):

    • 988 Suicide & Crisis Lifeline: Call or text 988 or chat at 988lifeline.org Free, confidential support for people in emotional distress or crisis.
    • Crisis Text Line: Text HELLO to 741741 Trained crisis counselors available anytime, anywhere in the U.S.
    • National Domestic Violence Hotline: Call 1-800-799-7233 or text START to 88788 thehotline.org

    Support for Specific Communities:

    Ongoing Mental Health Support:

  • Out of My Mind and Back Into My Memories

    Out of My Mind and Back Into My Memories

    Why This Story Hit So Hard

    About a month ago I watched the movie Out of My Mind on Disney+. Afterward, I decided to go back and read the book. I’m so glad I did. You know what they say books are always better than the movies.

    Even though I saw the movie a month ago, Sharon Draper’s words brought back memories. I hadn’t expected those memories to resurface. They still ache a little, even years later.

    Before I go any further, I want to be clear. These are my thoughts, my feelings, and my recollections of what happened. Memory is slippery. Emotions can tint the edges. So take what I say with a grain of salt. Know that this is how it felt to me. Sometimes that’s the most honest thing a person can offer.

    Melody’s Story, and Mine

    In the story, Melody is a brilliant girl with cerebral palsy. She uses a communication device, has a sharp wit, and knows more than most people give her credit for. A highly emotional moment in the book occurs when her classmates are selected for a big trip to Washington, D.C.

    Melody is supposed to go too. But things don’t go as planned. Melody doesn’t get to go. Reading that part felt like looking in a mirror.

    The Trip I Didn’t Get to Take

    When I was in seventh grade, my school organized a class trip to Washington, D.C. just like Melody’s. I was excited. Nervous. Hopeful. I pictured myself standing in front of the Lincoln Memorial. I imagined exploring the Smithsonian. I saw myself laughing with my classmates in a hotel room late at night. I imagined the memories we’d make, the stories I’d have to tell. But then came the catch.

    The school told me I couldn’t go unless one of my parents, or another adult, came along as my personal aide. They said it was about ensuring my safety and meeting any personal needs I might have during the trip. But here’s the thing: by that age, I could dress, bathe, feed, and toilet myself without assistance. The only support I might’ve needed was help navigating long distances. Someone could push my wheelchair when my stamina ran low from all the sightseeing. It wasn’t really about safety.

    It was about discomfort. Their discomfort. They didn’t want to figure out how to include a disabled student. They weren’t willing to make accommodations. And they certainly didn’t offer to help cover the cost of bringing someone to support me. So their solution? Exclude me instead.

    Much like Melody in the story, I was deeply disappointed. But disappointment was nothing new to me. I’d grown used to it whether it came from friends, family, or the world at large. I rarely showed it, because by then, I had learned to hold it in. I knew expressing it wouldn’t change anything.

    Still, I remember one conversation vividly. One evening, I was riding in the car with my aunt. I told her how much I wanted to go on that trip. I don’t remember where we were headed, but I remember the weight of wanting so badly to be included. She even talked about trying to help cover the cost, or going with to aid me, to make it possible.

    But in the end, it just wasn’t possible. My parents couldn’t afford the added expense. So that was it. No Washington, D.C. No trip. No adventure. Just me, left behind at school while my peers made memories without me.

    My class explored the nation’s capital while I stayed behind. I sat in a classroom with the small group of students who didn’t go. I felt forgotten. Left out. It felt unfair. I had wanted that experience so badly. I wanted to be part of the stories they’d tell when they came home. I didn’t want to be the kid they left behind.

    Bitterness and Bucket Lists

    Even now, nearly 30 years later, it still leaves a slightly bitter taste in my mouth. I still haven’t made it to Washington, D.C. But it’s on my bucket list. When I finally get there, I’ll be standing tall. You better believe I’ll be giving a big, proud, proverbial middle finger to every staff member. This is for every teacher who once thought I didn’t belong. Because guess what? I made it anyway.

    Melody’s Story Is Our Story

    Reading Out of My Mind brought all of that back. Melody’s story isn’t just hers. It belongs to many of us. We have had to fight just to be included. Others take these things for granted. Her heartbreak is our heartbreak. But so is her strength, her wit, and her refusal to be underestimated.

    That’s the power of stories like this one. They don’t just show the world as it is they help us imagine the world as it should be.

    A World Where Everyone Belongs

    I believe in that world. One where we don’t put conditions on belonging. One where we assume competence instead of questioning it. One where disabled children aren’t left behind because adults decided their inclusion was too inconvenient or too expensive.

    If you haven’t read Out of My Mind, I encourage you to. Yes, it’s a work of fiction. However, it captures something deeply real. It portrays the inner life of a young person who is so often spoken about instead of spoken to. Melody’s voice may be artificial in the technical sense, but her story rings powerfully human.

    Let’s build a world where no one has to prove they deserve to be part of the story.

    Let’s listen.

    Let’s include.

    And let’s never stop imagining, and creating, a better way forward.

  • From Poster Child to Invisible Adult

    From Poster Child to Invisible Adult

    Growing Up Disabled in a World Obsessed with Cute

    When I was a kid, people thought I was adorable. I had chubby cheeks, a bright smile, and Cerebral Palsy.

    That last part, my disability, somehow made me even more “inspiring” in the eyes of strangers. I was the kind of kid who showed up in brochures for community events. I got extra attention from teachers and therapists. I drew “Aww”s and “God bless him”s at the grocery store.

    A young boy with curly hair and large glasses smiling brightly at the camera, wearing a yellow and black striped collared shirt with a yellow boutonnière pinned to it.
    Me at my most joyful—missing teeth, oversized glasses, and a smile bigger than my face. The kind of photo people loved to “aww” over.

    Disabled kids are cute. Society loves a feel-good story, especially one that comes in a pint-sized package with leg braces and a cheeky grin.

    But here’s the thing: I grew up.

    And when I did, the attention disappeared.

    I’m 41 now. Still disabled. Still Cerebral Palsy. Still me. But somewhere along the way, I stopped being cute. And in the eyes of the world, I stopped being seen.

    Adult man with curly hair wearing clear glasses, a gray hoodie, and a denim vest, sitting indoors and smiling slightly in a well-lit coffee shop.
    The same person you saw in the childhood photos. Different glasses, different decade. Same Cerebral Palsy. Same me.

    The “Cute Factor” and Conditional Compassion

    We follow a cultural script with disabled kids. We shower them with support, attention, and affection. This continues as long as they remain children. The moment they grow into adulthood, that same compassion starts to dry up. Public programs disappear. Services shrink. Opportunities narrow. Even social attitudes shift from admiration to discomfort, from celebration to suspicion.

    As a child, I had access to therapies, educational supports, and community resources. There were coordinated efforts to help me grow, thrive, and participate. But as I got older, it felt like the message became: Well, good luck now you are on your own.

    I went from being someone people wanted to help… to someone people tried not to make eye contact with.

    The Adult Disability Cliff

    This isn’t just my story. This situation is a systemic reality known in advocacy circles as the services cliff. The support sharply drops off when a disabled person ages out of pediatric care. It also decreases when they leave school-based programs or children’s nonprofit funding.

    We don’t talk about this enough. Adults with disabilities face higher rates of poverty, unemployment, isolation, and inadequate healthcare. But we rarely make the news unless we’re breaking Paralympic records or fighting for survival in a viral video.

    Why? Because disabled adults don’t make people feel warm and fuzzy in the same way disabled kids do. We complicate the narrative. We ask harder questions. We don’t fit into feel-good stories with easy endings.

    Kids vs. Adults

    As a Child with a DisabilityAs an Adult with a Disability
    School-based physical, occupational, and speech therapyTherapy often not covered or comes with strict insurance limitations
    Individualized Education Plans (IEPs) with legal accountabilityNo IEPs for college or jobs—just ADA “reasonable accommodations”
    Access to special education teachers and support staffLimited access to job coaches; shrinking supported employment resources
    Pediatricians and specialist trained in children with disabilitiesFewer adult physicians familiar with complex disability care
    Early intervention programs (birth–age 3)Virtually no equivalent early adult transition support
    Summer camps, social groups, and extracurricular inclusion programsSocial isolation is common; few adult-focused adaptive recreation spaces
    Case managers to help coordinate servicesAdults often navigate a confusing system alone
    Parent advocates built into the systemAdults are expected to self-advocate
    Medicaid waivers often easier to access for minorsAdult services require complex eligibility and waitlists
    Positive visibility in media and fundraisersAdults rarely portrayed unless overcoming “against all odds”

    The shift is more than inconvenient; it’s structural. We build systems around disabled children to help them grow. Then we tear those systems down just when adulthood starts demanding more from us: jobs, independence, healthcare navigation, stable housing.

    The message? “You’re on your own now.”

    From Three Times a Week to Barely At All

    When I was a kid, I went to physical therapy three times a week.

    I’ll be honest—I wasn’t a huge fan of it at the time. I was a kid. I didn’t want to stretch or do strength exercises. I wanted to be outside or reading or literally anywhere else. But looking back, I realize just how lucky I was.

    Those sessions helped me build strength, coordination, and confidence. They gave me tools to move through the world.

    Now, as an adult? I can count the number of PT sessions I’ve had in the past ten years on both hands.

    It’s not that I stopped needing physical therapy. Cerebral Palsy didn’t magically go away when I turned 18. But getting PT as an adult is a whole different game. There has to be a specific reason or goal that meets insurance criteria. It’s not about maintaining mobility. It’s about justifying the expense.

    Even when you do qualify, you’re often limited to a small number of sessions. Once they’re gone, they’re gone. Never mind if your muscles get tighter again, or if your mobility starts slipping. There’s no regular check-in. No ongoing plan. Just a shrug and off you go.

    I get that insurance companies want to save money. But regular PT for adults isn’t just about recovery it’s about maintenance. It’s about keeping people functioning and independent for as long as possible.

    I’ll be the first to admit it’s not always easy to schedule therapy sessions as an adult. I remember when I was taking classes in Hutchinson. Just finding time between classes and homework to go to PT was a challenge.

    Now, I have to fight for every step literally and figuratively.

    The Economic Angle: Preventative Care Saves Money

    What gets overlooked in all this is how short-sighted the system is. Ongoing PT and accessible health support aren’t just about comfort they’re about prevention. If adults with mobility disabilities had regular maintenance care, many could avoid injuries. Falls, surgeries, and hospital stays could also be avoided later.

    But instead of investing a little now, we let people deteriorate, and then spend far more reacting to preventable problems. It’s penny-wise and pound-foolish. And people like me pay the price with our bodies.

    The Emotional Cost: Losing Visibility

    There’s a strange grief in realizing you once mattered more to the world.

    As a child, I had a whole team cheering me on therapists, teachers, volunteers, neighbors. Now, I’m often just trying to prove I deserve the bare minimum. It’s not just about services. It’s about dignity. About being seen.

    When I was younger, people called me brave. Now, they call me an expense.

    Still Here. Still Worthy.

    I’ve included a photos. Me as a child, me as an adult. The disability in both pictures is the same. The person? Still me.

    A young boy with curly hair smiles at the camera
    At a young age I knew I was cute and I knew how to use it.
    Adult man with curly hair, wearing sunglasses and a dark gray shirt, smiling outside in front of a tall building under a clear blue sky.
    Still disabled. Still smiling. Just taller now—and with fewer people calling it “brave.”

    But the world doesn’t treat those two versions of me the same way.

    This isn’t a plea for pity or applause. It’s a call to remember that disabled children become disabled adults. We don’t stop needing support, visibility, and respect just because we’ve aged out of a marketing campaign.

    The cute kid didn’t disappear. He just grew up.

    And he still matters.

  • Redrawing the Map

    Redrawing the Map

    This post grew out of a writing class assignment. We were asked to draw a map of my childhood neighborhood. Then we had to tell a story about it. What emerged was not a single story. It was an exploration of childhood, disability, and friendship. It also examined how we redraw our lives over time.

    When I was drawing the map for class, I realized how small my world was. We were supposed to share a story about our neighborhood. However, I didn’t have any that came to mind. At least, not in the way the assignment intended. What came to mind instead was pain and heartache.

    The sharp smell of pencil lead clung to my fingers as I traced the roads of my childhood. On the page, the map looked simple. Two gravel roads crossed like stitches. There was a handful of houses. The sagging fence line was where the horses would run and buck. But as I drew, the map whispered back something I hadn’t expected.

    The map was small.

    Not just in miles and landmarks, but in meaning. It made me realize how small and limited my world had been.

    I rarely left home. The only times I did leave were to go to school or church (at least until I got confirmed). Occasionally, I went to the theater, the skating rink, or a cousin’s house for a sleepover. Those trips stopped once we hit junior high. I really interacted with neighbors only when we rode horses around the section.

    Living in the country and having a disability made it difficult to have friends. The isolation wasn’t just about miles of gravel roads. It was about feeling cut off from the world of other kids. Even when classmates lived nearby, the distance between us felt bigger than geography. It was the distance of difference, of not quite fitting into their games, their rhythms, their conversations.

    I remember when I was in school, there were only a few places I could sit during lunch. We had long, picnic-style tables, and because of the wheelchair, I was limited to the ends. I didn’t want to be a burden to anyone. So, I’d often pick the same table. It was the one closest to the end of the cafeteria line. It became its own quiet ritual — not quite belonging, not quite invisible, always on the edge of things.

    Still, there were moments of connection that broke through.

    One afternoon in first or second grade, I played baseball in the yard of the twin girls. They lived down the other country road and were also in my grade. I sat on the grass to make it easier to get around because wheelchairs and lawns don’t mix well. I don’t remember much else from that day. I recall the sun on our backs. There was a quiet sense of belonging, even if only for a moment.

    I remember having a couple of my own friends over — both times because it was my birthday. The first time was in fifth grade when I “invited” the pastor’s son from church. He came over for a sleepover. I still shared a room with my sister then. That night, my mom decided it was time for my leg stretches. They usually forgot them but remembered at the worst moment. I was hopeful they’d skip it. But no. I lay there trying not to cry in front of my friend. My mom stretched my legs, sometimes painfully. He didn’t stay long the next morning. For my birthday, he gave me a black-and-white picture of a dragon to color in with markers. I think I colored it, though I don’t remember for sure.

    Then there was the classmate who lived next door for a while. We’d been friends since kindergarten. We were the kind of friends who came and went as their family moved away. Then they came back, and after a while, moved away again. When they came back briefly in eighth grade, I remember trying harder. I made a point to talk with them and to help. It was a small act of making amends. I pulled away in fifth grade because I thought they were “cramping my style.”

    The second birthday friend came when I was a senior in high school. We got out of school early one Friday. We wandered around downtown. This was a small thing to most people, but huge for me. I was so used to the school bus taking me straight home. We went to the Video Box. I rented my first R-rated movie because I was now eighteen. I think it was American Pie. My friend gave me a finger skateboard to assemble. It was a cool alternative. A real skateboard would’ve been too hard for me to use. I held onto it for years. Looking back, I realize he was probably one of the only “real” friends I had in high school.

    These two friends? I haven’t spoken to them in years. If you tracked them down and asked, they might not remember the details. But I do.

    Looking back, I see that while I often felt on the margins, I wasn’t as alone as I thought. Those small moments — a game of baseball, an awkward birthday sleepover, a walk downtown — were lifelines. They didn’t erase the loneliness, but they punctured it, leaving small but lasting marks. They taught me that connection doesn’t have to look like the movies or the friendships I envied. It can be quiet, brief, imperfect — and still matter.

    And as much as the map of my childhood was small, the map of my adult life is much broader. I have a small core group of friends. There are fewer than a dozen of them. But they are the kind of people who show up when it matters.

    When my last living grandma was dying of cancer, they were there. They helped with rides and supported me during the funeral. When my first service dog, Dempsey, was diagnosed with third-degree AV block, they ensured I got him to his vet. They made sure he attended his appointments. They also made sure that I ate. When he passed away unexpectedly, one of them drove nearly eight hours round-trip to bring me home from a camping trip in northern Minnesota.

    Back then, I thought the boundaries of my world were fixed. I believed the small map I lived in was all I’d ever know. But maps, I’ve learned, can be redrawn.

    My childhood map may have been small. However, my adult map is wide enough to hold friendship. It also encompasses grief, loyalty, and love. Sometimes, the best stories come from the places we outgrow. These stories also come from the people we learn to carry with us.

    Author’s Note:
    I share this piece with the hope it resonates. It is for anyone who has ever felt on the margins. Yet, they still found meaning in imperfect connections. It’s about small worlds, quiet resilience, and the way we carry the past as we grow into larger lives.

  • More Than Qualified, Still Overlooked: One Disabled Worker’s Truth

    The Harsh Reality of Disability and Employment

    Finding a job is hard. Finding one as a person with a disability? Often twice as hard—and half as fair.

    Despite decades of progress, people with disabilities still face enormous hurdles in the workforce. From inaccessible interviews to discrimination that’s harder to prove than to feel, the disability employment gap remains stubbornly wide. As of 2024, only about 22.5% of people with disabilities are employed, compared to 65.8% of non-disabled people, according to the U.S. Bureau of Labor Statistics. And now, with looming threats to Social Security programs, the urgency to find stable, fulfilling work is greater than ever.

    Balancing Purpose and Pay

    I have been looking for more financially stable work for quite some time. I love what I do right now. However, I need something more reliable regarding the amount of money I can bring in.

    I am also looking for jobs that will feed my soul. They should not drain my emotional and physical energy. I know that might seem like taking the easy way out. Throughout my life, I’ve learned that being in draining positions harms my overall well-being.

    Many people with disabilities face the same struggle. They try to balance physical or mental health needs with the demand for financial stability. It’s not just about wanting a job. It’s about finding one that doesn’t push you past your limits.

    A 2022 study by Accenture found a significant correlation. Companies that embraced disability inclusion were twice as likely to outperform their peers in profitability. They also had improved productivity. Yet, many of us never get the chance to show what we can do.

    Living on the Edge of Uncertainty

    I am in a rather unique situation. I do receive SSDI. This allows me to be more selective about the work I do. I am also aware of the changes the current administration is trying to make to Social Security.

    You should look for alternate sources of income. This is important in case there is a stoppage in the SSDI checks you receive. According to the Social Security Administration’s 2024 Trustees Report, the trust fund is projected to be depleted by 2033. Reforms are necessary to avoid depletion.

    The Job Search: A Loop of Silence and Rejection

    In the past six months, I have submitted countless applications. Most of the time, I don’t hear anything back. Then there are rare instances where I get to interview. I don’t know if I suck at the interview process. I don’t know if it’s because I am a wheelchair user. Maybe it’s because I have a service dog. Usually, after that first interview, I get the dreaded response. It says: “After careful consideration, we have decided to move forward with other candidates.” Their experience more closely aligns with our current needs.

    Statistically, this kind of experience isn’t unusual. According to the National Organization on Disability, many employers still have biases. They also have inaccessible workplaces and a lack of inclusive practices. These conditions make it harder for disabled applicants to be hired or promoted. These invisible barriers reinforce the frustrating reality many disabled job seekers face. You can be qualified, capable, and enthusiastic. Yet, you might still be overlooked.

    My Work History: Then and Now

    I have been working on and off since I was 14 years old. During the summer of 1998, I had my first taste of what a job would be like. I was taking summer classes in the Twin Cities thanks to the generosity of my aunts. They had an amazing friend who worked as a head chef at a hotel near the airport. They were willing to give me a chance at what I can now only describe as something of an internship. Arrangements had been made for me to “work” one day a week. Despite this, I still had to interview with the head chef. I was scared and nervous and excited all at the same time.

    My first official summer job was at the Swift County Recorder’s Office in the summer of 2000. It was an exciting experience, even though the job was simple: scanning documents to be digitized. It gave me more responsibility and a little bit of spending money. I worked so much that I burned through the allotted funds that paid my wages. The following summer, I had a similar job with the county’s Soil and Water Conservation Office. Again, it was a simple job but taught me a lot about responsibility.

    These early jobs weren’t glamorous, but they helped shape my work ethic. I was learning to navigate a world. This world was not designed with me in mind, like it wasn’t for many other young adults with disabilities. According to the National Organization on Disability, workplace biases persist. Inaccessible environments remain. Additionally, a lack of inclusive practices continues to be a major roadblock to employment for disabled individuals.

    Campus Jobs, First Steps, and New Lessons

    The summer after my senior year of high school, I didn’t work. Not because I couldn’t get a job, but because I wanted one last summer of freedom before college. During college, I held a few on-campus jobs. While living in Hutchinson, I worked part-time as a tutor. To be honest, I don’t even remember what subject I tutored. However, I do remember getting a letter from the county about not reporting the $65 I earned. I had no idea I needed to at the time.

    At Augsburg, I had a variety of jobs. I helped the campus LGBTQ+ organization with their website and digital advertising. I was also a tour guide for the admissions office. My focus was often giving tours to prospective students with mobility challenges.

    A Decade of Retail—and Then, the Curtain Closed

    After graduation, I was fortunate to land a temp job with a downtown Minneapolis staffing agency. I was surprised they hired me, but I guess when you’re a temp, they take whoever they can get. That role lasted about eight months, and then I was unemployed again. I submitted many applications back then. It felt like a lot. I rarely heard anything back.

    Eventually, I applied at Best Buy. They had a location at the Mall of America. It was easy for me to get to. I’d never worked retail in my life and barely shopped at Best Buy before. I remember the hiring process. There was a phone interview. Then there was a group interview (my first ever). I felt completely out of place during it. I didn’t say much because I didn’t know what to say. Somehow, I said enough to move on to the final interview and land the job.

    Originally, it was supposed to be a seasonal role, but they decided to keep me on part-time after the holidays. I continued working at Best Buy for nearly 10 years. Over time, I shifted into different departments and eventually landed a full-time position. It was nice having PTO and a consistent paycheck.

    Unfortunately, it wasn’t meant to last. In the summer of 2018, Best Buy closed that location. I considered applying to the nearby Richfield store and even had a few interviews there, but it felt different. They seemed more hesitant to hire someone with my “unique abilities.” It didn’t work out, but I received a decent severance package and took a much-needed three-month break.

    That hesitation? It mirrors what many disabled workers experience. Too many hiring processes contain a subtle skepticism. There’s a belief that accommodating a disabled employee is more trouble than it’s worth. But data and my own personal experience contradicts that. Studies show that providing accommodations often costs less than $500, and the long-term benefits—employee retention, morale, and diversity—are invaluable.

    I did a training video in 2017 while I was with Best Buy on this exact issue. My general manager and I were featured in a video about workplace accessibility. The video highlighted how simple accommodations can make a huge difference in supporting disabled employees. These include clear communication, flexibility, and simple adjustments to schedules and the layout of an eight-foot section. For example, the management made the point-of-sale terminal more accessible. This change helped me ring out customers in my department.

    All they had to do was remove a section of shelving to lower the register. It didn’t just work for me—it worked for everyone. While the video is now unlisted, it remains one of the proudest accomplishments of my time there and is still featured on my LinkedIn profile as a reminder of what true inclusion can look like in action

    Where I Am Now—and Where I Want to Go

    In the fall of 2018, I landed my current role at U.S. Bank Stadium. I love the staff I work with—it’s a great environment. Things have changed a lot since returning post-COVID, but I don’t see myself leaving anytime soon. That said, hours have been very limited since the pandemic. I need something that provides more financial stability.

    In 2021, I met Amy B., a personal trainer specializing in inclusive fitness. She created Fit with Amy B to provide training for people of all abilities. I improved my own health through her program. She also brought me on to help behind the scenes making everything run smoothly. She saw the benefit of having people with disabilities not only workout with her. They also worked with her to bring greater awareness to healthy living, regardless of your abilities. I truly loved what I did for Amy. I have yet to find another job that offered the same level of flexibility. It also provided fulfillment.

    Unfortunately, SSDI barely covers my monthly expenses. It doesn’t give me the flexibility to do the things I enjoy, like traveling or going out with friends. Living on a fixed income can be incredibly limiting.

    According to the National Organization on Disability, many people with disabilities face financial insecurity. They also encounter systemic bias and physical barriers. These obstacles prevent equal access to job opportunities.

    And yet, studies by Accenture show that companies prioritizing disability inclusion perform well. They are also twice as likely to be innovative.

    The Bigger Picture: You’re Not Just Hearing My Story

    This isn’t just my story. It’s the story of many people in the disability community. They want to work. They are ready to work. They constantly run into walls—both visible and invisible. It’s time to break those walls down.

    Call to Action

    We need employers, policymakers, and communities to step up. Employers must rethink hiring practices to eliminate bias and prioritize inclusion. Lawmakers need to protect Social Security and invest in programs that support people with disabilities, not strip them away. And for those reading this: listen to our stories. Share them. Advocate for change. Because no one should be shut out of opportunity simply because society hasn’t caught up to our potential.

    Sources: