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.

  • 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.

  • 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:

  • The Cost of Loyalty: What It Takes to Be a Season Ticket Holder

    The Cost of Loyalty: What It Takes to Be a Season Ticket Holder

    I wasn’t planning to write this today. I sit here and look out at the dreary Minnesota sky. I know there’s a significant chance I won’t attend tonight’s Minnesota United FC match. I felt like I needed to put some thoughts down.

    Quick note: I’m part of AccessiLoons—Minnesota United FC’s first and only supporter group focused on accessibility and inclusion. However, everything I share here is based on my personal experience. It doesn’t reflect the views of the group.

    This will be the second game I’ve missed this season—and not because I’ve lost interest or stopped caring. Far from it. I’ve been a season ticket holder since 2015. That was long before the team joined MLS and before Allianz Field was even a blueprint. Supporting this team has been one of the most consistent and joyful parts of my life.

    But tonight, like many nights, I’m forced to weigh the realities of being a fan with a disability. The weather is cold, windy, and there’s a chance of rain or snow. And rain and power chairs don’t mix well.

    After last weekend’s afternoon match, my wheelchair started to malfunction on the way home. Thankfully, I made it back safely and the issue didn’t repeat itself—but moments like that stick with you.

    Every time I head out in this type of weather, there’s that voice in the back of my mind:

    • “Is my chair going to malfunction again?”
    • “Will I get stranded somewhere?”
    • “What do I do if something goes wrong?”

    It makes you cautious at times about leaving the house.

    This post isn’t just about one missed game. It’s about what it really takes to be a loyal fan in 2025—financially, physically, and emotionally.

    When Passion Meets Practicality

    I’ve always budgeted for my season tickets. When I was working full time, the yearly price increases didn’t hit as hard. Even during the pandemic, I had enough money coming in to keep my seats. Soccer was one of the few constants during an unpredictable time.

    But when the world reopened, my income didn’t bounce back as ticket prices continued to rise. Something that once felt like a justifiable splurge now feels like a financial stretch.

    Still, giving them up feels impossible. Supporting this team is part of my identity. It’s how I connect with friends. It’s where I feel community. But loyalty, especially on a fixed or limited income, comes with a price—and that price keeps going up.

    Accessibility Isn’t Just About Seats

    Being a fan with a disability adds another layer to all of this.

    Sometimes, I simply can’t attend—even when I want to. The home opener in March is always a weather gamble, and this year was no exception. That was in the evening—and I had just worked an afternoon shift at U.S. Bank Stadium. I was already cold and running low on energy. I didn’t know if I had the stamina—or the body regulation—to sit through the full match.

    As someone with limited mobility, I can’t generate much body heat. Once the sun goes down, so does the temperature—and so does my ability to safely enjoy the game.

    I made it to the match the weekend before because it was an early afternoon kickoff. It was still cold, but the sun made it manageable. That little bit of warmth made all the difference.

    And then after the issues with my wheelchair after last weeks game there’s the added layer of equipment concerns. It was enough to shake my confidence. Now, every time I head out , I have to ask:

    • What if my chair stops working?
    • What if I get stuck far from home?
    • Who do I call?
    • Will anyone be able to help?

    That kind of risk doesn’t factor into most fans’ decisions to attend a match. For disabled fans, it’s part of the mental math every single time.

    To be clear, many of these challenges aren’t unique to Minnesota United or Allianz Field. The stadium staff has generally been supportive, and there are accessible features in place. But even well-designed venues can fall short when the full spectrum of disability isn’t considered. These issues show up in stadiums across the country—and they’re often invisible to those who don’t live with them.

    Some of the most common barriers disabled fans face include:

    • Cold or extreme temperatures that are dangerous for fans with mobility or circulation limitations.
    • The distances from parking or public transit stops are long. They can feel like a marathon for those with fatigue. This is also true for those with chronic pain.
    • Crowded concourses and bottlenecks that create safety issues for wheelchair users and others needing space.
    • Ticket policies with little flexibility, even when health issues make last-minute changes necessary.
    • Energy management challenges—sometimes, it’s not about willpower. It’s about knowing your body has limits.

    The Marketplace Problem

    When I can’t attend, I turn to the SeatGeek Marketplace to resell my tickets. But that experience isn’t fan-friendly either.

    I need to list the tickets above face value to cover SeatGeek’s 10% seller fee. This is necessary to just break even. On top of that, buyers are charged another 10% fee. That’s a 20% markup just for a resale—not to make a profit, just to avoid losing money. And guess what? Most people won’t pay that.

    So now, I’m out the money, and I missed the game. It adds insult to injury.

    Lately, I’ve found myself quietly wondering what the future holds. I’m not ready to give up my season ticket membership yet. However, I’m starting to reevaluate things. The rising costs, the physical strain, the uncertainty that comes with each game—it all adds up.

    At some point, I may have to ask myself whether this version of loyalty is still sustainable for me. I love this team. I’m not going anywhere as a supporter. However, being a season ticket holder might look different down the road.

    Let’s Do Better—for All Fans

    If you work for a team, a supporter group, or even a ticketing platform, ask yourself a question. What are you doing to make sure disabled fans are fully included?

    Accessibility isn’t just about wheelchair spaces or ADA check boxes. It’s about understanding the full picture. This includes weather risks, energy limits, and malfunctioning mobility equipment. Resale policies also matter. Then, there is the emotional toll of being excluded from something you love.

    If you’re not thinking about all types of access, you’re leaving people behind.

  • Here We Go Again

    I Hate Writing About This, But I Have To

    I don’t like talking about politics on social media, and I certainly don’t like writing about it here. But this isn’t about politics—it’s about livelihood.

    I feel like I’ve written this post a dozen times. I hate that I have to keep writing about government funding, budget cuts, and restructuring. I hate that every few months, I have to sit down and explain. Once again, I must clarify why Social Security, Medicare, and Medicaid aren’t just line items on a budget. They are lifelines for millions of people, including myself.

    I wish I didn’t have to keep writing about this. I won’t stay silent until I am confident that my future is safe. The future of millions of others must also be safe for me to stay silent. Because the moment we stop speaking out, those in power believe they can do whatever they want.

    Why This Matters (Again)

    There’s talk of making deep cuts to Social Security, Medicare, and Medicaid. Do I think it’ll happen? Maybe not to the extent being proposed, but the fact that it’s even a possibility is terrifying. Medicaid/Medicare is a life line for people like me.

    If it does happen, here’s what it means for me:

    • SSDI helps cover my portion of household bills and the costs of having a service dog. I work part-time, but last year, I made about $1,600 before taxes—not nearly enough to live on.
    • Medicare covers my $50,000 power wheelchair. If they slash funding, approvals for equipment and repairs could take months. If my chair breaks down, my independence is gone.
    • Medicare and Medicaid cover my PCA (Personal Care Assistant) hours. These hours help me conserve energy. This way, I can focus on things that bring me joy. Examples of these activities are writing and spending time with friends. If they take those hours away, I risk serious health consequences. Even a reduction means needing a shoulder replacement sooner rather than later.

    And then there’s Jason, my longtime PCA, who also relies on this income. If his hours are cut, he loses a major source of financial stability. That means losing our home. It’s that simple.

    This isn’t just about me. This is about millions of people—seniors, disabled folks, low-income families—who depend on these programs to survive.

    In a recent Disability Scoop post dated March 19, 2025, they tell the story of Xavier. He has a rare genetic immune disorder. It undermines his body’s ability to fight disease. California’s Medicaid program, Medi-Cal, provides Xavier with the treatments he needs. It offers resources to his family as well. This support helps him live as normal of a life as possible.

    His mother is quoted saying:

    “It’s allowed him to go to school. It’s allowed him to be home and not living in a hospital 24 hours a day,”

    Parents of children with special health care needs aren’t the only ones raising concerns about potential cuts. Disability advocates, health care providers, budget analysts, and state lawmakers have also voiced alarm. The House proposal passed on February 25 does not explicitly call for Medicaid cuts.

    Nonetheless, it instructs the House Energy and Commerce Committee. This committee oversees the program. It needs to find $880 billion in savings over the next decade. According to experts, reaching that level of savings would be nearly impossible without reducing Medicaid funding.

    I Hate Writing About This, But I Can’t Stop

    Every time I write about Social Security or Medicare or government cuts, I feel like a broken record. I’ve covered this before:

    And yet, here we are again.

    I wish I could stop writing about this. I wish I could move on. But I can’t. The second we stop talking about it, the people in power win. The moment we get exhausted and say “Oh well, nothing we can do,” they triumph.

    What Can We Do?

    • Talk about it.
      • Even if it feels repetitive, even if it’s exhausting—keep the conversation going.
    • Contact your legislators.
      • I know, I know—Congress is a mess. But if enough of us make noise, they have to listen.
    • Get your story out there.
      • Talk to the media.
      • Write to local newspapers.
      • Use social media.

    I don’t want to write another post like this in six days, in six weeks, or in six months. But if I have to, I will.

    Because this isn’t politics. This is life.

    Read More:

  • Left Behind by the Democrats

    Left Behind by the Democrats

    Over the past few months, I’ve written extensively about the changes unfolding in our government. I’ve also discussed their impact on our communities.

    There have been drastic budget cuts to Social Security. There is also an urgent need for reform in Minnesota’s disability services. I’ve delved into the pressing issues that affect us all. I’ve also explored the challenges faced by the LGBTQIA+ community, highlighting the growing need for advocacy and support.

    Amid these discussions, I’ve felt an increasing urge to share more of my personal story. Shortly after the 2024 presidential election, I wrote a piece that I wasn’t quite ready to publish. It was raw, emotional, and an honest reflection on feeling left behind by the Democratic Party. While I shared it with a few close friends, I hesitated to make it public. I wasn’t sure how it would be received—and, frankly, I wasn’t ready for the potential backlash.

    I continue writing about the state of our nation and the impacts of policy changes on disability support services. I realize that my personal story is an essential part of this broader conversation.

    The emotions I felt in November 2024 still resonate. They affect not just me but many others too. These emotions reach those who feel disconnected, disillusioned, and left behind.

    Today, I’m ready to share this piece with you. I’ve made some edits to improve readability and included links to cited sources. My hope is that it resonates with you. I wish it sparks meaningful conversations. I also hope it encourages all of us to think critically about the direction we’re headed as a country.

    Left Behind by the Democrats

    A Personal Reflection on the Democratic Party’s Disconnect and the Fight for Our Rights

    By Levi Dokken | November 7, 2024

    I have been sitting here with a lot of feelings—sadness, anger, even rage. Part of me wanted to lash out at the people who voted for Donald Trump. To work through these emotions, I felt the need to sit down and write.

    Writing helps me release emotions. It allows me to express my thoughts. By expressing them, they don’t consume me.

    The Disconnect Between the Democratic Party and Rural America

    Donald Trump has won, and I believe it’s because the Democrats failed. They have failed the people they claim to represent. They are no longer the party of working men and women. Just look at the state of Minnesota. It went for Harris but is still a sea of red. There is only a small island of blue. The party only focuses on the areas where they need electoral votes to win the overall race.

    I grew up in a small town in Minnesota. I saw firsthand that most people in my community weren’t necessarily concerned with national politics.

    They focused more on day-to-day struggles. They were figuring out how to put food on the table. They were also finding money to cover the mortgage. They worried about what to do if their child needed braces and health insurance didn’t cover it.

    Candidates campaigned across the United States. They focused primarily on so-called battleground states and urban areas. They believed these areas would secure enough votes for them.

    Small towns across the nation increasingly feel disconnected from the Democratic Party. They believe the party has shifted its focus toward urban and coastal issues. This shift comes at the expense of rural communities.

    The Electoral System: A Barrier to Representation

    I often wonder if political candidates would pay more attention to smaller towns if votes were delegated differently. They might also focus on smaller states.

    Our current electoral system feels outdated. It resembles a relic of an age long since dead. In it, the voices of a few battleground states dictate the direction of the entire country.

    What if we had a more localized electoral college system within each state?

    For example, if each county were assigned an electoral vote, it might create a more balanced representation. The majority vote within a county would decide how that county’s electoral vote was cast. This system could offer an option to the current popular vote system that most states use to assign their delegates.

    Disappointment with Democratic Leadership

    Joe Biden announced he was running for a second term. I had a strong feeling he was going to lose.

    In 2020, he claimed he would be a transitional president. What happened to that promise? He was unwilling to even hold a primary. I was much more enthusiastic about the possibility of MN Rep. Dean Phillips entering the race. The Democrats, however, dismissed it, holding fast to the tradition that the incumbent automatically runs for re-election.

    Watching the first presidential debate, I was floored. Both candidates seemed unfit to hold the highest office in the land.

    Biden stumbled with his words and thoughts; at times, he seemed unable to keep his ideas in order. Trump wasn’t much better—he mostly rehashed grievances from 2020 without offering a clear plan for change.

    Project 2025: A Threat to Disability Rights

    Project 2025 adds to my concern. It is a plan from The Heritage Foundation. The next administration might choose to implement it.

    According to the Disability Rights Education & Defense Fund, this plan proposes changes with deep impacts on programs like Medicaid. It introduces funding caps, stricter eligibility requirements, and time limits.

    These changes could drastically reduce access to essential services for people with disabilities. Services like medical equipment, personal care attendants (PCAs), and specialist visits are crucial. They are necessary for maintaining health and independence.

    For me, Medicaid covers my specialist visits. It also covers my nearly $50,000 power wheelchair and repairs. Additionally, it covers the cost of my partner, Jason, as my PCA.

    How Do We Talk to Those Who Voted for Trump?

    How do I talk to my friends and family who voted for Donald Trump? How do I understand their choice to support someone who has assaulted women? He attempted to overturn a fair election. He also incited his supporters to storm the Capitol.

    Some of Trump’s supporters hold harmful views. However, I believe most are simply scared, misinformed, or longing for a past they believe he can bring back.

    I don’t want to cut these people out of my life, especially when many are lifelong friends or family. We can still be connected; we just may not talk about politics.

    What Can I Do Moving Forward?

    I’ve shared many things with you. The Democratic Party’s disconnect from rural America is concerning. Our electoral system has flaws. Policies like Project 2025 carry potential consequences. There’s a growing divide among friends and family. I can’t help but feel a mix of frustration and overwhelm.

    The future feels uncertain. These decisions could have long-lasting effects. They could also have life-changing effects for myself and those I care about. I find myself sitting here after writing this, asking myself, What can I do?

    As one voice out of millions, not much. But I can be part of something bigger. When others raise their voices against the incoming administration’s policies, I can stand with them. I can support the women in my life, the friends who feel vulnerable right now. I can do my part, however small, to work toward a future that protects everyone’s rights and dignity.

    Will you join me?

    Sources