Wheels On Down the Road

Tag: Life with a Disability

Personal experiences, challenges, and triumphs of living with a disability, from daily routines to navigating societal barriers.

  • What Symbols Say…and What They Don’t

    What Symbols Say…and What They Don’t

    Content Note:

    This post explores personal safety, public perception, and disability. It examines the powerful role of symbolism in shaping how we see each other. It includes candid reflections on behavior, clothing, and stereotyping.

    My goal is to examine how snap judgments affect perceptions. Cultural bias, lived experience, and survival instinct often shape these judgments.

    My goal is not to reinforce harmful narratives. These are sensitive topics, and I approach them with honesty, nuance, and a desire to encourage thoughtful dialogue, not division.

    Hats, Songs, and Snap Judgments

    I was listening to Jason Aldean’s Try That in a Small Town the other day, and it got me thinking.

    Not about the music itself—though it’s catchy in that flag-waving, boot-stomping way, but about the reaction it sparked. The song blew up. It was not because of a brilliant guitar solo or a poetic turn of phrase. It gained popularity because people saw it as more than a song. For some, it was a patriotic anthem. For others, a veiled threat.

    Like another modern American lightning rod: the MAGA hat.

    That bright red cap, simple as it is, might be one of the most instantly polarizing accessories in U.S. history. To some, it’s just a political statement. To others, it might as well be a warning flare.

    So what is it about these symbols—songs, hats, slogans, flags—that causes such intense reactions? Why do some people feel pride when they see them, while others feel fear?

    And most importantly, what can we do to see past the symbol and engage with the person?

    When a Song Becomes a Flashpoint

    Released in 2023, Try That in a Small Town went viral. It reached not just the charts, but also spread across headlines, op-eds, and furious threads. The lyrics paint a picture of small-town loyalty. They highlight tough consequences for crime. Aldean made no secret of the song’s pro-law-and-order message.

    But it wasn’t just the lyrics. The music video, initially filmed at a Tennessee courthouse where a Black teenager was lynched in 1927, paired Aldean’s performance with scenes of violent protests and looting. To many, that imagery—plus the song’s aggressive tone—felt racially charged and threatening.

    To others, it felt honest. Real. A voice for people who believe their rural communities and traditional values are mocked or misunderstood.

    So which is it?

    Well… both. And that’s the point.

    When a Hat Isn’t Just a Hat

    The MAGA hat follows a similar logic. Originally a campaign slogan, “Make America Great Again” has morphed into a political identity. Wear it, and you’re instantly tagged—by strangers on the street, by friends on Facebook, by whoever is across the room.

    Some wear it proudly to show support for Trump. They also wear it to push back against what they see as cancel culture. Others see it as a stance against coastal elitism.

    Others view the hat as a threat—a symbol of racism, exclusion, even violence. And not without reason: plenty of people have used it as a tool of intimidation.

    The reality? The hat isn’t magic. It doesn’t turn someone into a villain—or a hero. But it does carry the weight of what’s been done in its name.

    The Red-Hat Moment: My Brain Took a Shortcut

    I’ll admit it. I’ve had my own knee-jerk reaction. Not long ago I was visiting a friend I hadn’t seen in ages. As I walked up, I spotted that familiar shape on their head: bright red cap, bold white lettering.

    My stomach dropped. I hadn’t pegged them as the MAGA type. For a moment, I felt this weird swirl of disappointment. Confusion and even a little anxiety crept in.

    Then I got closer. The hat? Totally apolitical…just a diner logo. My brain had filled in the blanks—and fast. That’s how potent the MAGA symbol has become: it hijacked my perception before I even focused my eyes.

    Safety, Perception, and Lived Experience

    Snap judgments don’t stop with red hats. They fire when someone’s clothes or body language feel threatening.

    When someone gives off an aggressive or unpredictable vibe, I naturally tense up! it’s less about what they look like and more about the energy they’re projecting. It doesn’t matter their race or background; if the energy feels off, I stay on alert.

    As a person with a disability, I live with the reality that I’m more vulnerable in public spaces. If someone decides I’m an easy target, I can’t always run, fight back, or vanish. Statistics on crime against disabled folks are grim.

    So yes, my guard goes up. I’m scanning for risk.

    But I also know those gut reactions aren’t perfect. They’re shaped by media, experience, and survival instincts that don’t always leave room for nuance. That’s not an excuse it’s just the tension I live with: protecting myself without dehumanizing someone else in the process.

    Being on the Other Side of the Assumptions

    Here’s the twist I don’t just make snap judgments. I’m on the receiving end of them all the time.

    Because I move differently, people assume I think differently. They slow their speech, over-enunciate, or talk to the person next to me instead of me. Apparently physical disability = mental disability in their shortcut-happy brains.

    It’s dehumanizing and exhausting. It springs from the exact same place as those red-hat and hoodie reactions. It is that lightning-fast visual assessment we love to rely on. So yes, I get why we judge symbols. I also know what it feels like when that judgment erases who I actually am.

    Why Our Brains Go There

    We’re wired to simplify. Symbols help us sort the world into friend or foe in milliseconds. Efficient, sure—accurate? Not always.

    Songs and hats are easy to judge. People are messy. When we reduce someone to the symbol they’re sporting, we lose the story of why they believe what they believe.

    So What Can We Do?

    • Get curious, not furious. Ask, “What does that mean to you?” instead of “How dare you wear that?”
    • See the person, not the brand. Humans are never one-note.
    • Balance intention and impact. Harm can happen even without malice.
    • Know when to walk away. Some folks wield symbols purely to provoke. You don’t have to oblige.

    More Listening, Less Labeling

    “Try that in a small town,” the song challenges.

    Maybe we should try talking in one. Or in a city. Or across the dinner table. Not to convert just to understand.

    Symbols will always carry power. But so do our choices especially the choice to look beyond the surface.

  • 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

  • When the Beat Doesn’t Match the Burden: Situational Anxiety, Disability, and the Song That Hits Too Close

    When the Beat Doesn’t Match the Burden: Situational Anxiety, Disability, and the Song That Hits Too Close

    Disclaimer:

    Songs, like stories, can mean different things to different people. The way I interpret Anxiety by Doechii may not be how you hear it and that’s okay.

    In this post, I’m sharing my personal reaction and reflections based on my own lived experience with anxiety and disability.

    If this song resonates with you differently, feel free to share your thoughts in the comments. We’d love to engage in conversation rooted in empathy and curiosity.

    You might be struggling with anxiety or your mental health. Know that you are not alone. Support is available. Please check out my previous post from Mental Health Awareness Month. It contains additional thoughts and resources.

    When the Beat Doesn’t Match the Burden

    Lately, I’ve seen a surge of reels using Doechii’s Anxiety. Catchy. Rhythmic. Visually clever. And also, unintentionally, a little unsettling. There’s a growing trend. Creators use the song in a way that feels like it makes light of a real, raw experience.

    That experience? Living with anxiety.

    Anxiety doesn’t always look like shaking hands or visible panic attacks. For me, it’s more often quiet. Slow-burning. And always lurking.

    What Anxiety Really Looks Like…for Me

    Social media loves a dramatized version of anxiety: loud, obvious, and aesthetic.
    But real anxiety, the kind I live with? It’s quieter. Heavier. Trickier to explain. To me, anxiety looks like this:

    • It’s that feeling in the pit of my stomach as I wait for the bus. Will it come? Will it pass me by because I’m in a wheelchair?
    • It’s wondering. I went to the bathroom two times before leaving the house. I still worry if I’ll have an accident while I’m out.
    • It’s walking my service dog through the mall, worrying: he hasn’t pooped yet today. Will I miss his signal? Will he have an accident indoors? What will people think?
    • It’s questioning my friendships: Do they really want to help me? Or do they pity me?
    • It’s the constant churn: Will I ever stop worrying about money? Will I ever find a job that sees me for who I am? Will they view me beyond just being “that guy in the wheelchair with the dog?”
    • And yes, weekly if not daily, it’s the gnawing fear: What if my power wheelchair breaks down? Will I be stranded? Will someone help? How will I get home?

    This is situational anxiety. It doesn’t come from nowhere it comes from real, lived experience. From systems and barriers and histories that teach disabled folks like me that help isn’t guaranteed. That our presence is often inconvenient. That our independence is fragile.

    The Weight of Situational Anxiety

    Situational anxiety is the kind that grows out of lived experience. It’s not imagined. It’s not abstract. It’s knowing your support system might not show up. It’s remembering every time it hasn’t.

    It doesn’t always manifest in panic attacks or spiraling thoughts.

    Sometimes, it’s a list of backup plans running on loop. It’s scanning for exits, double-checking elevators, hoping that someone nearby will care enough to help if something goes wrong.

    It’s the subtle, exhausting labor of planning for a world that often overlooks you.

    And still, it gets minimized.

    People hear “anxiety” and think inconvenience. Nerves. A personality quirk.
    Your basic safety or dignity depends on systems. These systems frequently fail you, creating a pressure cooker situation.

    Beyond the Filters and Feeds

    So when I hear Doechii sing:

    “It’s my anxiety / Can’t shake it off of me…”

    I don’t hear a vibe. I hear a mirror.

    And when that same song is used to make light of anxious experiences, it hurts.
    Because I know how hard it is to speak up about these things to name them.
    I know the courage it takes to share the ugly parts, the raw parts, the unphotogenic parts of mental health.

    So when a song like Anxiety is reduced to a joke or aesthetic, it’s not just careless.
    It’s a silencing act. It says: your pain is only valid if it’s entertaining. Your story only matters if it’s edited down to something easy to consume.

    We can do better than that.

    What the Song Gets Right

    Doechii sings:

    “Anxiety, keep on tryin’ me / I feel it quietly / Tryin’ to silence me.”

    Yes. That. Right there.

    Anxiety is not always loud. Sometimes it’s a hush that follows you into every room. A voice that questions every decision. A hand that rests just a little too heavy on your shoulder.

    Later, she sings:

    “I get this tightness in my chest / Like an elephant is standing on me / And I just let it take over.”

    It’s visceral. Real. A truth we don’t always see captured in public conversations about mental health—especially those involving disabled bodies and disabled minds.

    This Song Isn’t Just a Soundbite

    This post isn’t about gatekeeping art. I’m not here to tell anyone to stop using the song.

    But I am inviting us to pause. It’s about honoring the people who see themselves in it.To consider that behind the beat is a person who wrote those lyrics from a place of pain. And behind the screens watching your reels? There might be people who live those lyrics every day.

    If you’re someone who hears Doechii’s Anxiety, and you feel it in your chest instead of your content calendar, this is for you.

    Your anxiety, whether clinical or situational or both, is valid. Your fears, rooted in real-world experiences, deserve to be named without shame. You deserve space not just on the feed, but in the conversation.

    So the next time you hear that chorus play, pause for a second.
    Listen. Really listen. And if you can, hold space for those of us who can’t just shake it off.

    Because for us, Anxiety isn’t a trend. It’s the background noise of daily life. And we’re doing our best to live above the volume.

    Let’s use music as a bridge, not a punchline.

    Let’s honor art by honoring the realities it comes from.

    And let’s talk more about what anxiety really looks like.

    Because it keeps on trying us.

    And we keep on trying back.

    If you’d like to share how Anxiety by Doechii resonates with you, I’d love to hear your perspective. This could be whether it resonates the same, differently, or not at all.

  • 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.

  • Somewhere Wet and Windy

    Somewhere Wet and Windy

    The Walk Begins

    This is your on-the-ground correspondent reporting live from the storm zone—also known as my neighborhood sidewalk.

    It all began innocently enough. I had just finished my coffee. I was strolling home with Surley, my loyal service dog. A light drizzle began to fall. No big deal. We’re Minnesotans. We’ve seen worse.

    A city street in Minneapolis with dark storm clouds rolling in, a USPS mailbox in the foreground.
    Earlier in the day—ominous clouds overhead, but still totally convinced I’d make it home dry.
    Spoiler: I did not.

    The Downpour + Tornado Siren

    But then—cue the dramatic music—the sky opened up. Torrential rain. We ducked under shelter. It let up. We continued. It poured again. We found more cover. The storm played with us like a cat with a string.

    And just when we were four blocks from home, the tornado siren wailed.

    Where was it located? Right on the very street we were walking. Rain pelted our faces. The wind howled. The siren blared as if it were auditioning for the lead role in a disaster film.

    Naturally, as the siren screamed, I started picturing The Wizard of Oz. But instead of Dorothy and Toto, it was Levi and Surley getting swept up and carried off to the land of Oz. I wasn’t wearing ruby slippers. However, I was absolutely ready to take down a witch with a soggy sock. I had some Midwestern passive aggression ready as well.

    The real star of this cinematic experience? Surley. Calm. Steady. Unbothered. For a dog who usually finds storms a bit spooky, he handled it like a seasoned storm chaser.

    I told him repeatedly how proud I was. He just powered through the wind and the rain. He glanced at me as if to say, “Chill, I’ve got this.”

    Coming Home

    We made it home drenched, slightly stunned, and still laughing.

    Surley celebrated with zoomies.

    I dried us off like we’d just crawled out of a creek. Which, in a way, we had.

    A yellow Labrador retriever lying on a carpet, still damp from the rain, resting with his eyes half-closed.
    Post-storm status: one brave boy, thoroughly toweled and dramatically resting on the living room floor.
    (Zoomies: complete. Dignity: mostly intact.)

    Your Turn

    Have you ever been caught in a surprise storm with your pet?
    Did they channel inner courage… or cartoon chaos?

    Tell me your best soggy, windy, or siren-filled story in the comments.