Wheels On Down the Road

Category: Disability Rights & Advocacy

Exploring accessibility, inclusion, and equal rights for people with disabilities. From policy discussions to personal experiences, this category highlights barriers, progress, and advocacy efforts for a more equitable world.

  • 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.

  • 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:

  • Disability Services in Minnesota: A Crisis That Needs Fixing

    Disability Services in Minnesota: A Crisis That Needs Fixing

    Disabled Minnesotans continue to struggle with long wait times for essential disability services. This is the third time this month I’ve written about issues facing disabled people, and yet, the problems persist. I felt frustrated after reading another article in the Star Tribune. I was frustrated enough to once again lend my voice to this conversation.

    I’m fortunate that I rarely face issues accessing the services I need to live a successful life. But hearing about the struggles others endure just to receive basic support is deeply upsetting. No one should have to fight this hard for the help they desperately need.

    Bureaucratic inefficiencies, workforce shortages, and inadequate funding continue to create unnecessary delays. Many disabled individuals remain stuck in limbo, unable to access services they’ve already been approved for. These delays aren’t just numbers on a report—they are real people, facing real consequences.

    Real People, Real Consequences

    Pamela Thomas, a Hutchinson, Minnesota, resident, has been waiting months for care. She qualifies for a waiver that covers personal care assistance. However, she remains without support due to workforce shortages and bureaucratic hurdles.

    The Star Tribune recently covered Thomas’ story. They reported that she remains on a waiting list. There is no clear timeline for when she will receive the care she needs. Minnesota’s Medicaid system has left thousands in similar situations. It forces people into an exhausting battle to get services they have already qualified for.

    Families across Minnesota are facing similar challenges as they wait for essential services. Many disabled individuals have had to reduce their work hours. Parents of disabled children have also needed to cut back on work. Some have even left their jobs entirely to provide necessary care. Others cannot work at all. They lack the critical supports needed to maintain employment. They are often waiting on county funding that has yet to arrive. Some rely on family and friends for assistance. Many others face increasing financial strain. They continue to wait for the services they desperately need.

    Addressing the Crisis: Key Reforms Needed

    • Streamline the Waiver System: Cutting administrative delays by simplifying paperwork and hiring more staff will speed up approvals.
    • Increase Workforce Support: Providing better pay and benefits for caregivers will reduce staffing shortages.
    • Ensure Long-Term Stability: Disability services need stable funding rather than last-minute budget decisions.

    Success Stories in Advocacy

    Advocacy works. In 2024, disability rights advocates in Kansas praised a budget provision. It was aimed at shortening wait times for disabled Kansans in need of services. This legislative effort was viewed positively.

    It represents a step towards addressing the backlog. It also ensures timely support for those in need. By organizing rallies, meeting with legislators, and sharing personal stories, they created real change. A similar movement in Minnesota could lead to the reforms we need.

    How You Can Help

    Advocacy plays a crucial role in fixing delayed disability services. Here’s how you can help:

    • Contact Your Legislators: Call or email your state representatives and demand action on disability service delays. Find your representative here.
    • Share Your Story: If you or a loved one has experienced delays, share your experience on social media.
    • Sign Petitions: Support initiatives pushing for policy changes. Consider signing petitions advocating for streamlined services.
    • Join a Local Advocacy Group: Organizations like the National Disability Rights Network are leading efforts to fix service delays.

    More on the Challenges Disabled People Face

    Sources

  • Accessible Air Travel Threatened

    Accessible Air Travel Threatened

    Accessible air travel should be a right, not a privilege. However, for wheelchair users, flying can be a nightmare due to frequent mishandling of mobility devices. Every trip comes with an underlying fear: Will my wheelchair make it in one piece?

    Unlike lost luggage, a damaged or broken wheelchair isn’t just an inconvenience. It can mean losing mobility and independence. It may even cause someone to miss out on travel altogether.

    Recently, the Department of Transportation (DOT) introduced regulations to address these issues. These rules aim to hold airlines accountable for how they handle mobility devices. However, instead of embracing these improvements, major U.S. airlines are pushing back, trying to roll back these critical protections.

    If they succeed, it won’t just affect disabled travelers today. It could also set a precedent. Such a precedent would make future accessible air travel even harder to achieve.

    What the Biden-Era Regulations Do to Improve Accessible Air Travel

    To improve air travel for disabled passengers, the DOT introduced several new requirements. Specifically, these regulations require airlines to:

    • Improve training for airline personnel and contractors handling wheelchairs.
    • Provide real-time tracking of mobility devices during loading and unloading.
    • Be held accountable for damages or mishandling of essential mobility equipment.

    The Reality of Flying as a Wheelchair User: Why Accessible Air Travel Matters

    For wheelchair users, air travel often comes with unnecessary risks. If a power wheelchair is lost or damaged, the consequences are severe. It is not just a minor setback. It can leave someone stranded without mobility. Unlike suitcases, mobility devices are custom-fitted for their users, meaning repairs or replacements can take weeks or even months.

    For this reason, I personally avoid flying whenever possible. For instance, when I traveled to Seattle for a cruise, I took Amtrak. I chose it instead of flying because I couldn’t take the chance that my wheelchair would arrive damaged. If that had happened, I wouldn’t have been able to board the ship or enjoy my trip.

    No one should have to plan their travel around whether an airline will handle their essential mobility device properly.

    A Dangerous Slippery Slope for Accessible Air Travel

    Unfortunately, if airlines succeed in overturning these regulations, it could open the door for them. They may challenge other crucial accessibility improvements. This would make an already difficult travel experience even worse for disabled passengers. Some of the improvements currently under discussion include:

    • More wheelchair-accessible airplane bathrooms, which would allow passengers with disabilities to use the restroom without unnecessary struggle.
    • In-cabin wheelchair seating would allow wheelchair users to remain in their chairs. This prevents the need to store them below the plane, where damage is likely.

    If airlines succeed in rolling back current protections, they may argue that future accessibility improvements are too costly or inconvenient. This is why it is essential to push back now.

    How You Can Take Action to Protect Accessible Air Travel

    • Stay informed. Follow updates on DOT regulations and share information widely.
    • Speak out. If you or someone you know has experienced issues with airline accessibility, share your story with me here.
    • Contact your representatives. Advocate for stronger disability rights in air travel to prevent airlines from rolling back accessibility improvements.

    Disability Advocacy Groups Fighting for Change

    Sources

    Disclosure: The feature image for this article was AI-generated. Key phrases from this post were used to create a visual representation of the topic.

  • Presidents’ Day and Disability: A Hidden History

    Presidents’ Day and Disability: A Hidden History

    Today’s post is a history lesson, but I hope you find it enlightening rather than dull. It’s Presidents’ Day, a holiday originally created to celebrate George Washington’s birthday on February 22. As the nation grew and elected more presidents, the holiday evolved into a day to honor all U.S. presidents.

    Presidents and Disabilities: A Lesser-Known History

    Since this blog focuses on disability, you might wonder why I’m writing about Presidents’ Day. The reason? Many past U.S. presidents have had disabilities—some visible, some hidden. Growing up, I had dreams of becoming president, thinking I would be the first disabled person to hold the office. However, history proves otherwise.

    One of the most well-known examples is Franklin Delano Roosevelt (FDR). According to Wikipedia, FDR was elected in 1932 as the 32nd president of the United States. He remains the only physically disabled president in U.S. history. FDR led the country through the Great Depression. He also guided the nation during World War II. He implemented the New Deal and reshaped the American economy.

    Before he moved into the White House, ramps were installed to make it more wheelchair-friendly. To maintain his public image, photos were taken at specific angles to minimize the visibility of his disability.

    FDR’s Disability and Advocacy

    FDR began experiencing symptoms of a paralytic illness in 1921 at age 39 and was later diagnosed with poliomyelitis. He underwent extensive therapy, including hydrotherapy at Warm Springs, Georgia. Although paralyzed from the waist down, he made great efforts to conceal his reliance on a wheelchair and leg braces. In 1938, he founded the National Foundation for Infantile Paralysis, which played a crucial role in developing polio vaccines. While most historical records attribute his condition to polio, some modern experts suggest he may have had Guillain–Barré syndrome.

    Disability advocate Hugh Gallagher argued that Roosevelt went to great lengths to appear able-bodied, stating:

    “FDR did not want the public to be aware that he was forced to use a wheelchair.”

    President Roosevelt in his wheelchair on the porch at Top Cottage in Hyde Park, NY with Ruthie Bie and Fala. February 1941.
    FDR Presidential Library & Museum photograph by Margaret Suckley CC BY 2.0 via Wikimedia Commons

    In contrast, historian James Tobin suggested that Roosevelt used his disability as a strength. He portrayed himself as a fighter and an underdog. He did this rather than becoming someone to pity.

    In one of his rare public acknowledgments of his disability, Roosevelt addressed Congress on March 1, 1945, just a month before his death:

    “I hope that you will pardon me for this unusual posture of sitting down, but I know you will realize that it makes it a lot easier for me not to have to carry about ten pounds of steel around on the bottom of my legs.”

    Franklin Roosevelt is depicted in his wheelchair in the Prologue Room of the Franklin Delano Roosevelt Memorial National Park Service photo

    Designing an Inclusive Legacy: The FDR Memorial

    Even after his passing, the National Park Service ensured his memorial was accessible. According to NPS, landscape architect Lawrence Halprin designed the FDR Memorial with wheelchair ramps. He incorporated interactive statues and Braille engravings. These features made it accessible long before the Americans with Disabilities Act (ADA) was enacted.

    Other Presidents with Disabilities

    FDR was not the only president with a disability. According to United Rehabilitation Services of Greater Dayton, many U.S. presidents had disabilities, ranging from epilepsy to learning disabilities. Here are a few:

    • George Washington (1st President, 1789-1797): Believed to have had a learning disability due to struggles with spelling and grammar.
    • Thomas Jefferson (3rd President, 1801-1809): Reportedly had a learning disability despite being a principal author of the Declaration of Independence.
    • James Madison (4th President, 1809-1817): Had epilepsy but played a key role in drafting the U.S. Constitution.
    • Abraham Lincoln (16th President, 1861-1865): Battled severe depression and possibly had Marfan Syndrome.
    • Theodore Roosevelt (26th President, 1901-1909): Suffered from visual impairment due to a boxing injury.
    • Woodrow Wilson (28th President, 1913-1921): Had a learning disability, possibly dyslexia, and suffered a stroke while in office.
    • John F. Kennedy (35th President, 1961-1963): Experienced chronic back pain and is suspected to have had a learning disability.
    • Ronald Reagan (40th President, 1981-1989): Developed hearing impairment due to an on-set accident during his acting career.
    • Bill Clinton (42nd President, 1993-2001): Has high-frequency hearing loss and wears hearing aids.

    A Legacy of Strength and Resilience

    Throughout American history, presidents with disabilities have faced unique challenges, yet they persevered to lead the nation. Their stories highlight the importance of resilience and show that disabilities do not define a person’s potential.

    This Presidents’ Day, as we honor the leaders of our country, let’s also recognize the barriers they overcame. Disability should never be seen as a limitation—it is simply one aspect of the diverse experiences that shape great leaders.

  • How Policy Changes Could Impact Disability Support Services

    How Policy Changes Could Impact Disability Support Services

    I have been receiving support services through personal care assistant (PCA) hours for over twenty years. Over this time, I have worked with many different PCAs, each bringing unique skills and compassion to their work.

    My first PCA, Colleen, was a warm face every morning and evening. She helped to keep my apartment looking clean. She made sure I had plenty of food in the refrigerator. I could easily grab it after coming home from a long day of college classes. She had been a PCA for a long time and knew the ins and outs. She even helped me find resources to cover medical supplies. Until then, I had been paying for these out of my own pocket.

    Towards the end of our two years working together, I was finishing my two-year degree. We grew close and became good friends. I don’t keep in touch as much as I’d like. However, I think about her from time to time. I thank her for everything she did.

    My current PCA, Jason, and I came to work together in a unique way. He has been a longtime friend and now current partner. When I could no longer afford to cover the cost of my apartment, I asked him to move in.

    He saw firsthand the struggles I had keeping staff. He was there when a PCA quit on her first day. She quit because she saw we had a cat. We explicitly told the agency that any person who works in my home must be okay with cats.

    Jason was there when the staff would show up late or not show up at all. He often filled in without being paid. I was getting frustrated with the issues. He needed the extra cash. So I asked him to officially work with me, and we’ve been doing great ever since.

    These experiences highlight the invaluable role PCAs play in my life. They make it possible for me to live independently. I can focus on the things that truly matter. These hours have allowed me to live independently and use my energy in meaningful ways.

    The Importance of Personal Care Assistants (PCAs)

    Before I had PCA hours, I had to complete a vast majority of the housework on my own. For most people, this is not a huge problem, but for me, some of these tasks can be extremely draining.

    The Challenges of Daily Tasks Without PCA Support

    Take laundry, for example. Before I had PCA services, I had to drag the laundry basket to the washing machine down the hall. Then, I struggled to load a basket’s worth of clothes into the machine. Once it was finished, I had to stand next to the machine to unload the clothes into the dryer. The easiest part was getting them out of the dryer and back into the basket. Then came the long drag back to my apartment. By the time I got everything folded and put away, I was ready for a nap. Many times, I would get the clothes washed and dried. However, they might have to wait to be folded. I had more pressing tasks, such as getting groceries for the following week.

    Out of all the household tasks, grocery shopping was by far the hardest. This was before online ordering and home delivery became widely available. I would have to take the paratransit to the local grocery store. I could only purchase what I could carry on my lap. If paratransit was not an option, I would wheel my manual wheelchair to the store.

    By the time I got back home, I was exhausted. I would often develop blisters on my hands. This happened even though my dad gave me a pair of fingerless gloves to use.

    My family would sometimes make the hour-and-a-half drive to see me. Most of the time, they would also take me to the store. This allowed me to buy a large supply of food.

    Now that I have PCA hours, I worry about losing them. If they were cut back, it would significantly impact my overall well-being. However, I do not foresee this happening for me.

    Unlike many who rely on PCA hours, my PCA lives in the home with me. This means I do not have to worry about whether they will show up. I do not have to worry if the agency can find someone to fill in. This is important if the usual staff is unavailable.

    The Impact of Immigration Policies on Caregiver Availability

    A Minnesota Star Tribune article highlights a critical issue. Minnesota relies on immigrant and refugee workers to provide essential care. These individuals care for those with disabilities, chronic illnesses, and the elderly.

    A 2024 study by the Minnesota Department of Employment and Economic Development states an important fact. Over 20% of direct support professionals in the state are immigrants.

    The demand for home health aides and personal care assistants is projected to grow by 25% over the next decade. However, workforce shortages persist. High turnover rates exceeding 50% annually contribute to these shortages.

    Many current and potential caregivers are immigrants. They come from countries such as Liberia, the Democratic Republic of the Congo, Ethiopia, and Somalia. Restricting new entrants from these regions could severely impact the availability of qualified personnel in the caregiving sector. It would worsen the existing workforce crisis. This could leave thousands of individuals without critical support. Many individuals would not receive essential care for disabilities, chronic illnesses, and the elderly.

    These direct support professionals are indispensable in delivering daily assistance and ensuring the well-being of vulnerable populations. However, recent federal immigration policies, including increased deportations and the suspension of refugee resettlement, pose significant challenges to this workforce.

    Medicaid Waiver Cuts and the Risk to Independent Living

    Another Minnesota Star Tribune article highlights concerns among Minnesotans with disabilities. These concerns are about proposed state budget cuts to Medicaid waivers. These waivers are essential for funding services that enable individuals to live independently. They cover costs for personal care assistants, specialized equipment, and transportation not typically covered by insurance.

    Governor Tim Walz has proposed capping annual inflationary increases for these waivers at 2%. This is a significant reduction from the current 6% growth rate. This proposal aims to address a looming budget deficit projected for 2028. The shortfall is partly due to higher-than-anticipated Medicaid spending on disability services.

    However, advocates argue that such cuts could compromise the quality of care. They could force individuals into institutional settings. This would reverse progress made in supporting independent living for people with disabilities.

    “My brother sacrificed his limbs to the caregiver shortage”

    Real-Life Consequences of the Caregiver Shortage

    These staffing shortages are more than just an inconvenience for those who rely on these services. They can be a matter of life and death. In the fall of 2022, Dennis Prothero lost his legs due to a shortage of care workers.

    Paralyzed from an accident in 2004, Dennis required assistance with daily living skills. In the summer of 2022, he lost his vital caregiving support. As a result, he was forced to spend 24 hours a day in his wheelchair. The constant pressure led to severe sores. These sores went untreated due to the lack of available staff. Ultimately, this resulted in an emergency amputation to stop the spread of infection. Dennis’s older sister, Gayle King, told the Minnesota Star Tribune, “My brother sacrificed his limbs to the caregiver shortage.”

    Unhappy Ending

    Tragically, this was not the end of Dennis’s story. He was weakened by surgery and a prolonged hospital stay. Then he contracted bacterial pneumonia and COVID-19. These illnesses ultimately claimed his life in early December 2022. He was 68 years old.

    Dennis was more than just a statistic. He was a son, a brother, a father, and a friend to many, including me. We never met in person. However, we chatted online over the years. We bonded over our shared love of photography, cars, and our service dogs from Can Do Canines.

    What Can Be Done to Address These Issues?

    If these changes at both the state and federal levels were enacted, I would not likely be affected. I have live-in staffing. I do not rely on any of the programs the governor is looking to trim. However, I know that countless friends and loved ones could be affected.

    Changes are necessary to ensure financial sustainability. However, those changes should not come at the cost of some of our most vulnerable citizens.

    Sources

  • The Cost of Love: SSI, Marriage, and Disabled Individuals

    The Cost of Love: SSI, Marriage, and Disabled Individuals

    First, I want to wish everyone a happy Valentine’s Day. It is a day for love and lovers, whether you’ve been in a relationship for five days or fifty years. Love is in the air today.

    A Personal Story

    I have been in a committed relationship with the same person for over a decade. Our journey together has not been linear. We started as friends. We dated for a while. We broke up and then reconnected. Eventually, we moved in together when I could no longer afford my apartment. One day, something clicked in my mind, and I realized we were meant to be together.

    From the start, we knew marriage was unlikely. It was not due to a fear of commitment or legal barriers—marriage equality is now the law of the land. Instead, it was because of an unfortunate and outdated reality that affects many disabled people in this country.

    The Marriage Penalty

    The reason we cannot marry is simple, yet infuriating. If we were to legally wed, I would risk losing medical and financial benefits. These benefits are crucial for my independent living. Programs like SSI (Supplemental Security Income), SSDI (Social Security Disability Insurance), Medicaid, and Medicare enforce strict asset limits. These limits make it nearly impossible to save money. They also make it hard to earn a living wage.

    SSI was established in the late 1970’s. It still enforces an asset limit of $2,000 for individuals. This limit is $3,000 for married couples. These limits have not been adjusted in nearly 50 years, despite inflation and rising living costs. According to an NPR report, the so-called ‘marriage penalty’ in Social Security’s Supplemental Security Income (SSI) program remains unchanged since 1989, despite rising costs of living. The outdated asset limits continue to force disabled individuals into difficult financial choices, penalizing them for marriage. (NPR, June 18, 2024)

    The Unfair Choice

    Would I love to marry the person I love? Yes. Would I also love to maintain the benefits that give me the independence to live my life? Absolutely. But under current laws, many disabled people who choose to marry face financial hardship. They constantly struggle to stay under the asset limits. Some even make the painful decision to divorce because the burden is simply too much to bear.

    People often ask if this situation upsets me. The answer is an unequivocal yes. I want the same rights as every other person in this country. I am not looking to exploit the system. Instead, I want to live without fear. I worry that the person I love could be left without the legal rights and protections afforded to married couples. Without a medical power of attorney, my partner would have no say in my care. They would have no control over my affairs if something were to happen to me. That is not fair—to me, or to them.

    The Need for Change

    The system needs to change. Disabled people should be able to live with and marry the person they love without fear of losing essential benefits. Even in 2025, we are treated as second-class citizens under these rules. It is time for reform.

    Think about your loved one as you celebrate this Valentine’s Day. Also, reflect on those who are still forced to hide their love. Some remain legally unmarried out of necessity. Love should not come with penalties—it should be celebrated and protected, equally, for all.

  • Help Wanted?

    Help Wanted?

    “Do you need help?”

    This is a question that many people with disabilities, including myself, face daily. While it is often asked with good intentions, it can be an awkward or even frustrating experience for both the person offering assistance and the one being asked.

    Understanding the Context

    I recognize that offers of help usually stem from a place of kindness. In most situations, I will either accept the assistance or politely decline. However, the decision is rarely a simple one. Various factors influence how I respond.

    Take, for example, the buttons that automatically open doors. When I am out with my service dog, I typically decline offers from others to open doors for me. The reason is straightforward. My dog is trained to perform that task. If people frequently intervene, he may start to expect others to do it for him.

    That does not mean I refuse all forms of assistance. If someone is already holding the door open as they walk through, I will pass through as well. I have also observed this: many people find it fascinating to watch a service dog. They enjoy seeing it complete tasks it has been trained to do.

    On the other hand, there are situations where assistance is both welcome and necessary. For instance, if something is out of my reach like an object on a high shelf I appreciate the help.

    One particular instance stands out: while walking my dog, he once relieved himself just beyond my safe grasp. Despite my best efforts, I could not reach the mess. A businessman in a three-piece suit walked past, saw my struggle, and offered to help. I gratefully accepted because I understood the physical exertion required to complete the task on my own.

    Individual Perspectives Vary

    It is important to recognize that not all disabled individuals feel the same way about receiving help. Some welcome assistance, while others strongly prefer independence. I have encountered individuals who become frustrated or even angry when assistance is offered. This reaction may stem from viewing help as a sign of weakness. They may also be newly disabled and still adjusting to their limitations.

    How Can You Help?

    People often ask me what they should do in these situations, but there is no universal answer. The best approach is simple: ask. If someone accepts your help, that is wonderful. If they decline or appear irritated by the offer, do not take it personally. More often than not, their reaction is based on their personal experiences rather than a reflection of you.

    What You Should NOT Do

    One crucial rule to remember is never assume someone needs help and act without asking. Walking up and intervening without permission can be disruptive, and in some cases, dangerous. For example, when I transfer from my wheelchair, balance is critical. If someone were to assist me without warning, they could unintentionally cause me to lose balance. This action might lead to a fall, putting both of us at risk.

    Conclusion

    Offering help is a kind and thoughtful gesture, but it must be done with consideration and respect. The best way to assist someone with a disability is to ask first and accept their response without judgment. Understanding that every individual has different needs and preferences will create a more inclusive and respectful environment for everyone.

    So, the next time you see someone who needs help, remember: a simple question—“Would you like some assistance?”—can go a long way in fostering understanding and respect.

  • An Invitation to the Table

    An Invitation to the Table

    Last week, I found myself at a local coffee shop, seated at one of the accessible tables. My belongings were spread out, coffee in hand, ready to tackle some work. The table bore a small marker—a symbol indicating it was designated for wheelchair users like me. But as I sat there, I began to ponder the true meaning of that symbol.

    The purpose of such designations is to ensure that people with disabilities have a space where they can comfortably work, eat, or simply exist in a public setting. It is an acknowledgment that accessibility matters. But here’s the thing: while the table may be designed with accessibility in mind, it is not a table just for me. It is a table for anyone who needs it.

    If someone had approached me and asked, “Can I sit here too?” my answer would have been a resounding yes. Because that table, while accessible, is not exclusive. It is a space for anyone—a place to rest, to gather thoughts, to work, or simply to breathe.

    I think about all the possibilities that table represents. It could be a refuge for someone needing a break from the rush of the day, setting down their burdens alongside their coffee cup. It could be a haven for a book lover, lost in a story. Or maybe it is where a casual conversation begins, sparked by the big, goofy yellow dog lying quietly beneath the table, tail wagging at the possibility of a friendly pet.

    We live in a world where our focus is often directed inward—our own lives, our own struggles. We sometimes forget to notice the people sitting just a few feet away. Too often, we see others as strangers, obstacles, or distractions instead of potential connections.

    But what if we shifted our perspective? What if we saw spaces like that accessible table not as individual territories, but as shared places, open to all? What if we recognized them as opportunities to connect?

    I believe we need more moments where we simply sit together, whether to chat or to exist quietly in each other’s company. There is something powerful about being present with another person, even if only for a short while.

    So, if you ever see me at a table like that, do not hesitate. Walk up, meet my eyes, and ask, “Can I sit here too?” And I will say yes, gladly inviting you to share the space. Because at the end of the day, that table is not just for me—it is for anyone who needs it.

    Maybe we will talk about life, about our mutual love for this coffee shop, or about the silly antics of our dogs. Or maybe we will simply sit in silence, each focused on our own tasks, comforted by the presence of another person nearby.

    In a world that often feels isolating, taking a seat at the table might just be the first step toward creating a little more connection, understanding, and community.