Tag: Disability Awareness

Insights on the everyday experiences of individuals with disabilities, including the nuances of accepting or declining help.

  • A Lifetime of Love

    She remembered what she used to be like, and it was nothing like she was now. Lying in her hospice bed, her bones heavy against the thin mattress, she glanced over at Janis. Curled on the couch, soft snores drifted beneath the gentle rustle of pages, the worn paperback threaten to slip from her grasp. The lamp’s warm glow bathed them both, casting soft amber shadows on the walls, a thin bubble of light holding back the dim edges of the room.

    Seventy-five years. A lifetime together. She had never met another queer couple who had shared so much time. They weren’t lucky—no, not lucky. Lucky implied chance. They had worked for this. Even though neither of them had the best childhoods, they had built the kind of home they always dreamed of. 

    Over the years, they’d helped so many children find the love they themselves had needed. There had been moves, planning, saving, countless hours of discussion and paperwork. They were committed to do whatever needed to be done to help these children have the best chance of success. Through sleepless nights and boundless love, they had held on, hand in hand, refusing to let the world pull these children’s lives apart.

    As she thought back on the memories of the past her eyes grew heavy, the hum of the room melting into the slow, gentle rhythm of her heartbeat. Each thump seemed to draw her deeper, unraveling the present and letting memory rush in like a tide. 

    She could feel the edges of the world softening, as if the house itself was urging her to rest, to let go with the same gentleness they had shown every child who came through their door. Memories swept in carrying her back to the start of their story—the first glance, the first touch, the first moment when the world had shifted beneath her feet.

    The First Spark

    They met in college, back when the world was less forgiving. She had been studying social work, determined to make a difference for kids like her, while her soon-to-be wife pursued a degree in special education. The first time she saw her, they were in a crowded general education class, the kind where the professor barely glanced up from their notes.

    Her soon-to-be wife stood at the front of the room, shoulders squared, her knuckles pale against the wooden edge of the podium as her voice rose above the low hum of shuffling papers and half-hearted whispers. She was challenging the professor, demanding accommodations so that every student could participate equally. The room had gone still, the weight of her words settling over them. The professor’s dismissive response did nothing to deter her. Instead, her resolve only seemed to sharpen, a quiet defiance woven into every word.

    After class, while others slipped out through the back doors, she found herself moving forward, weaving through desks and backpacks to catch up to her. Her pulse thrummed in her ears, but the feeling in her chest told her this was important. She introduced herself, expressing her admiration for how bravely she had stood up to “the man.” The words had been meant as a joke, a thin veil of humor over a deeper truth.

    Her soon-to-be wife’s name was Janis, a nod to both Janis Joplin and Janis Ian. The moment she introduced herself to Janis, she felt a quiet thrill—a shared love of music layering itself over the spark of admiration she already felt. It seemed fitting that someone with a name echoing such powerful voices would find her own and use it so boldly.

    Janis had smiled then, a gentle, genuine expression that softened the remnants of her earlier frustration. What had struck her most wasn’t just the courage to speak up, but the quiet certainty beneath it—a sense that doing what was right was simply a given. They lingered in the empty classroom, talking as if the world had folded away, leaving only the two of them.

    That moment became the first of many. Conversations bloomed in quiet corners of the library, over long walks across campus, and in shared spaces where time seemed to stretch just for them. What began as a spark of admiration grew into a rhythm of companionship—study sessions and shared meals, standing together at protests, finding comfort in silence as much as in words. Their friendship deepened, roots entwining through shared hopes and the slow, steady discovery of all the ways their lives fit together.

    Over time, those moments became the foundation of something neither of them had expected but both had craved—a love built on the simple, powerful truth that they were better together. It was a certainty she had carried with her since childhood, a steady light in the dark corners of her past.

    Roots in Rocky Soil

    Even as a child, she had felt it—that quiet truth, unshakable and real. The girl who sat in front of her in homeroom always left her speechless, her stomach fluttering whenever she turned around to pass a note or share a smile. She had known she was different, a lesbian, from a young age, and she never felt ashamed of it. But her parents were deeply religious, and when they pieced together the truth, they cast her out and into foster care before her tenth birthday.

    The foster care system was no sanctuary. She became a pinball, bouncing from house to house, never settling long enough to call anywhere home. Some families simply didn’t know what to do with a girl like her. Others, once they realized what she was, saw her as a threat—someone who needed to be kept away from their children. Names blurred together, places faded into half-remembered rooms and faces. But there were some homes that remained sharp-edged in her memory, places where she kept her bedroom door locked at night, her back braced against the thin wood.

    Unfortunately, locked doors didn’t always keep the monsters at bay. She learned to listen for heavy footsteps in the hallway, to breathe slow and shallow when the shadows passed beneath her door. But no matter what they did, they would never change who she was. Her identity was a light she kept tucked inside, a flame they could never reach.

    By the time she aged out of the system, she was determined. She refused to be a victim. Despite everything—the moves, the broken promises, the nights spent bracing against locked doors—she graduated high school with some of the best grades in her class. Every test passed, every assignment completed felt like a quiet rebellion, proof that the world hadn’t crushed her.

    When she started college, her vision for the future was already clear. She had one goal: to become the social worker she never had—the kind who listened, who understood, who saw kids like her and didn’t try to change them. Most of the social workers she had known had dismissed her identity, brushing off her truth with tired platitudes. She remembered the patronizing smiles, the way they told her she just hadn’t met the right boy yet. As if her existence was a phase that needed correcting. As far as she was concerned, men had never done anything but try to break her.

    She didn’t need them. She didn’t need biological children, either. There were already too many kids lost in the foster care system, too many who had been thrown away like she had. Her path forward was clear—help as many of them as she could, offer the kind of safety and acceptance she had never known.

    Kindred Flames

    From the start, there had been something magnetic about Janis—something more than her boldness in the classroom or the quiet certainty that seemed to follow her like a shadow. It was in the way she held space for others, how her voice could soften a sharp room, how her laughter felt like warmth in the winter. She had a way of seeing people, of making them feel heard, even in a world that so often turned its back on those who didn’t fit the mold.

    She learned quickly that Janis’s courage wasn’t just for show. It was rooted in lived experience, in a childhood where acceptance had come slowly, edged with discomfort and caution. Janis had known what it was like to feel out of place in her own home, to love deeply while treading carefully. But instead of turning inward, she had opened herself up—her empathy a quiet rebellion against the world’s harshness.

    When they sat together on the library steps, books between them and the world moving on without notice, Janis would speak about her dreams of teaching. She wanted to create classrooms where every child, regardless of ability, felt valued. Where no one had to fight to be seen. Her vision was vivid—schools with sensory-friendly spaces, lesson plans that adapted to each child’s needs, and a curriculum that celebrated differences instead of hiding them.

    She would listen, captivated by Janis’s passion, the way her hands moved when she spoke, painting the air with possibilities. It wasn’t just what Janis wanted to do—it was the way she believed it could be done. It was a hope without edges, boundless and real.

    It wasn’t long before those quiet conversations turned into shared action. They volunteered together, tutoring kids after school and organizing supply drives for underfunded classrooms. They stood side by side at protests, their hands entwined, voices raised in unison. There were late nights spent crafting posters, cups of coffee going cold as they planned ways to make a difference. Every small victory—a kid passing a test, a teacher agreeing to try a new method—felt monumental because it was a step toward the world they wanted to build.

    Over time, admiration deepened into something more. What began as a friendship grounded in shared purpose bloomed into love, each moment layering over the last. It felt inevitable, like gravity, like finding a home you didn’t realize you had been searching for. Their love became its own kind of activism—a testament to the idea that creating safe spaces started within the walls of their own hearts.

    Through it all, Janis remained a beacon. She wasn’t perfect—no one was—but her imperfections only made her more real. She stumbled, had bad days, doubted herself, but she never stopped trying. She never lost the spark that had drawn her forward in that classroom all those years ago. And as their lives intertwined, she felt the weight of something she had only glimpsed before—a life where love and purpose walked hand in hand, where building something good was as simple and as complex as holding on to each other and refusing to let go.

    Building a Home

    After graduation, she and Janis moved into a small, one-bedroom apartment. It wasn’t much—cramped and drafty with mismatched furniture—but it was a start. They spent weekends sketching floor plans for their future home, a place where every child, regardless of ability, could find safety They dreamed of wide doorways, roll-in showers, and spaces designed with love and intention. Each step forward—every saved dollar, every completed foster parent class—was a brick laid in the foundation of the life they were building together.

    Together, they would build a home where every child they welcomed felt seen, where love was a promise kept and never taken back. And through it all, that old, stubborn certainty remained—a light they had carried through every shadow, one they now shared with each child who walked through their door.

    It wasn’t easy. Even though they could finally marry, love was not enough to erase the lingering shadows of prejudice. In many parts of the country—places like where she grew up—being in an “untraditional” relationship still barred them from adopting children. The laws may have changed, but minds hadn’t always followed.

    So they did what they had always done: they moved forward, together. They left behind familiar streets and old ghosts, settling in a more welcoming state where their dream of building a family could become a reality. 

    They spent long evenings talking about what they wanted their home to look like, what kind of parents they hoped to be. They both knew they wanted kids, but adoption had its limits. It might mean only helping a few children, but fostering—fostering had no ceiling. There were always kids in need of a safe place, a soft landing in the midst of turmoil.

    They decided to open their doors wide. The choice was never about filling a void in their own lives but about offering a refuge to children who had none. They wanted to help the kids who might not fit easily into other homes—the ones with disabilities, those who identified as LGBTQ, the ones too often left behind. It was a promise to the children they once had been, to right the wrongs of their own pasts.

    Janis’ story, like hers, was tangled with loss and longing. When they met in college, Janis had only recently come out to her parents. While Janis’ family had known other LGBTQ people, acceptance came haltingly, edged with discomfort. Their conversations were strained, the kind where words could turn into weapons without warning. But through the pain of those interactions, Janis’ resolve only grew stronger. She had learned early on how to hold space for both love and disappointment, a skill that would later help them create a home where every child felt wanted.

    Determined to break the cycle, they approached the fostering process with the same conviction they had brought to everything else. They completed the paperwork, opened their home for in-depth interviews, and showed the caseworkers the world they had built—one filled with warmth and intention. By then, they were already established members of their community. They had friends and neighbors who saw them not as an exception but as an example of what family could mean. Gathering the necessary references was effortless, a testament to the lives they had touched just by being themselves.

    When their approval finally came through, it was more than just a certification—it was an affirmation of everything they had fought for. They had created a home where love wasn’t conditional, where children of all kinds could find safety and acceptance. It was the start of something bigger than either of them had imagined, the first step in a journey that would stretch across decades and fill their home with the sounds of laughter, healing, and hope.

    Once they were approved as foster parents, all they had to do was wait. They didn’t have to wait long. One evening, as the sun sank below the horizon, they sat together on the couch, watching the highly anticipated Ellen relaunch. Their cozy, single-level home was filled with the warmth of laughter and the comfort of familiar voices. The house had been designed with intention—wide doorways, barrier-free bathrooms, and low countertops—making every space accessible to all, regardless of ability. Their home was more than just a shelter; it was a promise that every child who came through their door would feel seen, safe, and welcomed.

    The Call That Changed Everything

    When the phone rang, they shared a glance, both knowing that this call could change everything. The social worker explained that a young child with spina bifida needed a temporary placement. The courts were still determining if the child’s parents were fit to care for them. When the child arrived, their small frame and wary eyes told more of the story than words ever could. The social worker quietly shared the details—malnourishment, a severe diaper rash, and a urinary tract infection. Signs of neglect sat heavily between them, unspoken but undeniable.

    Taking gentle steps forward, they led the child inside, the smooth transition from the ramp outside to the hardwood floors a small but meaningful comfort. They moved slowly, guiding the child through the open spaces of their home, showing them that nothing here would be a barrier. The bathroom was warm and welcoming, with a roll-in shower and grab bars within reach. Soft towels were stacked neatly, and bubble bath soaps lined the tub’s edge.

    They knelt to the child’s level, explaining every step, letting them set the pace. It was important that the child felt safe and in control—something that had likely been rare in their young life.

    When asked if they’d ever had a bubble bath, the child shook their head. So they pulled out all the different bubble bath soaps they had, letting the child choose their favorite scent. The small act of choice brought a hint of light to the child’s face. Carefully, they helped the child out of their soiled clothes, but when one of them moved to put the clothes into a trash bag—for safekeeping—the child’s expression crumpled. It took a few soft-spoken assurances to explain they weren’t throwing anything away, just keeping the clothes safe.

    When the soiled pull-up was removed, the extent of the rash became apparent. Angry red skin, raw and beginning to break down. They felt a pang of grief and anger, but they knew this moment wasn’t about them. It was about this child, about showing them that love could be gentle.

    They slowly lowered the child into the warm bath, the water lapping gently against raw skin, a soft hiss of pain shared in silence. The scent of lavender bubbles curled through the air, a tender counterpoint to the child’s wary expression.

    After making sure the child was okay, they stepped out of the room to give them a few minutes of privacy. They hadn’t even fully closed the door before a small voice called them back.

    Reassuring the child, they asked if they wanted help cleaning up. The child’s face brightened, a fragile hope peeking through the layers of fear. Taking turns, they gently washed away the dirt and pain, moving slowly, following the child’s lead. When it came time to clean the rash, they explained that it might sting but that it was necessary to help the skin heal. The child nodded, their small hands clutching the sides of the tub, their trust a precious and fragile thing.

    In one of the many bedrooms they had prepared, they had set out clean pajamas and a fresh pull-up. The room was dinosaur-themed, with green walls and blankets patterned with prehistoric creatures. The full-sized bed looked like a nest of safety, a world away from the chaos the child had left behind. When the child wheeled into the room and saw the dinosaur pajamas, their face lit up. The joy on the child’s face mirrored the joy in their own hearts, a quiet moment of connection.

    As they helped the child get dressed, they asked if they were hungry. The child mentioned spaghetti, a dish that reminded them of home—of the love they had felt when their mom and grandma cooked together. It was a memory soaked in warmth, a thread of happiness they could build on. Without hesitation, the two women set to work in the kitchen. The open floor plan allowed the child to watch as they cooked, the smell of browning hamburger and simmering tomato sauce filling the house, wrapping around them like a hug.

    When they called the child to the table, the sight of the steaming bowl of spaghetti brought tears to their eyes. The women served small portions, understanding that trust was built slowly, in careful bites and soft words. To their delight, the child devoured two full servings, their appetite a hopeful sign.

    As bedtime approached, they guided the child back to the dinosaur-themed room, keeping the lights dim and the voices soft. They could see the nervousness in the child’s posture—how their small hands gripped the armrests of their wheelchair, how their eyes darted around the room. Gently, they reassured the child that they were safe here, that nothing bad would happen.

    They asked if the child wanted a stuffed animal to sleep with. The child’s eyes widened with wonder. They mentioned a dinosaur toy left behind in the rush to leave their home. Leading them to a collection of stuffed animals, the child carefully selected a blue tyrannosaurus rex, promptly naming it “Roar.”

    With the nightlight on and Roar tucked under a small arm, the child settled into bed. They barely had time to pull the blanket up before the child drifted off, the deep, healing sleep of a child finally safe. The two women stood in the doorway, watching over this tiny, brave soul.

    They knew they couldn’t fix everything. They couldn’t erase the pain or make up for the lost years. But they could give this child a moment of peace, a chance to breathe without fear. And as they stood there, hands clasped and hearts full, they knew that every step of their journey had led them to this moment—to this small, sleeping child who deserved the world.

    The Next Chapter

    The days turned into weeks, and the weeks into months. The world outside had slowed to a crawl as the global pandemic forced everyone indoors, but within their small, accessible home, life continued to bloom. There were no trips to playgrounds or family outings, but they found comfort in the simple things—marathon sessions of their favorite TV shows, puzzles and board games spread out on the dining room table, and the warmth of shared laughter. The women created new routines, folding stability into the unpredictable days. The child, who had once been so wary, now moved through their home with an ease that felt like a small miracle.

    When the long-delayed court date finally arrived, the women and the child sat together in front of the computer screen, the virtual courtroom a reminder of how much the world had changed. The child had dressed up for the occasion, wearing their favorite dinosaur T-shirt under a button-up shirt. They clutched Roar, the blue tyrannosaurus rex, tightly in their lap, a quiet anchor in a sea of unknowns.

    But neither the mother nor the father showed up to the hearing. The empty squares on the screen, marked only by muted microphones and silent names, felt like a door quietly closing. The child’s shoulders slumped, their expression a mix of sadness and resignation. The women exchanged a look, a wordless conversation passing between them.

    When the session ended, they wrapped the child in a hug, whispering reassurances that this wasn’t the end—just a new beginning. As they sat together, the women felt a spark of possibility. There was an opportunity here, not just to provide a temporary home but to become a forever family.

    After the hearing, they reached out to the social worker, carefully expressing their interest in adoption. They spoke about how the child had become a part of their family, how their days felt incomplete without the small sounds of their wheelchair rolling through the hallways, without the bedtime stories and quiet moments of connection.

    The social worker listened, her expression softening as she took in their words. She agreed that the child had thrived in their care and promised to reach out to the judge to explore the possibility of turning this foster placement into a permanent adoption.

    As they hung up the call, the women sat in the quiet of their living room. The house, filled with so many memories, seemed to hold its breath. They knew that nothing was certain, but they also knew that love had already made them a family. The legalities would follow. For now, they continued to do what they had always done—love, nurture, and hope.

    A Forever Family

    The judge thought the adoption couldn’t happen fast enough. As they read through the case notes, a clear picture emerged: the child was thriving in the women’s care. They had made every medical appointment, ensured a balanced diet, and watched as the child’s once frail frame slowly filled out with health. Under their roof, the child had found not only stability but also joy—something that had been painfully absent from their early years.

    The judge’s concern deepened when reviewing the repeated absence of the biological parents. This was not the first missed court date, and the silence on their end spoke volumes. Even if the parents reappeared, there were serious doubts about their ability to provide the environment the child needed to continue thriving. Neglect had left its mark, not just physically but emotionally, and the judge knew that uprooting the child now could undo all the progress they had made.

    As far as the judge was concerned, the biological parents had relinquished their rights when they had chosen absence over action—not only in their care for the child but in failing to show up when it mattered most. The court had a duty to protect the best interests of the child, and all evidence pointed to the women’s home as the safest, most nurturing place for them.

    With a few signatures and a lot of paperwork, the judge’s gavel came down with a soft but certain thud—an echo of finality, of forever. They left the courtroom hand in hand, the weight of those papers light compared to the promise they held.

    A Home for Many

    But for the women, this was only the beginning. Becoming parents had reinforced the fire within them to advocate for change. They had seen firsthand how difficult it could be for children with disabilities to find loving, permanent homes. They had witnessed how bias and outdated policies could keep loving families apart. So they took their story public, speaking out about the need for reform in the foster care and adoption systems.

    They began volunteering with organizations that supported disabled and LGBTQ+ youth, using their voices to amplify those who often went unheard. They shared their journey at community meetings, advocating for more accessible housing, inclusive school programs, and better support for foster families. They hosted workshops, taught others how to create homes that were not only accessible but welcoming, and mentored new foster parents, showing them how to build trust with children who had experienced trauma.

    Their home became a haven not just for the child they had adopted but for many others who needed short-term respite or emergency care. They remained licensed as foster parents, always keeping an extra bed ready. Each child who came to stay with them left with a suitcase full of clothes, toys, and a promise that they would always carry a piece of their home in their hearts.

    And through it all, the child they had adopted continued to grow—stronger, braver, and more confident each day. They joined their moms in their advocacy work, sharing their own story when they felt ready, standing as proof of what love and stability could do. Together, they became a voice for change, a living example of how family could be built from compassion and choice, and how every child deserved a safe place to call home.

    Their activism for children had only just begun with that first adoption. Over the many years of fostering, they had countless children walk or roll through their door. Some stayed only for a night or two, finding a safe harbor in the storm of their lives. Others, like their first child, stayed forever, their temporary bed becoming a permanent part of the home. No matter how long they stayed, every child who crossed their threshold left knowing they were loved and supported.

    Their home became a sanctuary, a place where kids could ask questions without fear, where every holiday meant a seat at the table, and every bedtime ended with whispered reassurances and soft nightlights casting gentle shadows. Over the years, they hosted birthday parties for children who had never blown out candles before, celebrated report cards, and cheered on milestones —both big and small.

    Over time, they adopted four children, but two stood out most vividly in their memories. One was a non-binary youth, whose parents struggled to understand what being non-binary meant and tried to make them conform to their birth sex. When that didn’t work, they essentially said, ‘We can’t handle this type of non-conforming behavior,’ and gave them up to the state. They learned sign language to better communicate with a deaf child whose parents had given them up for adoption because they could not cope with having a non-hearing child. 

    They made additional modifications to their home to accommodate other children who had varying levels of disability, always maintaining as much of a warm and welcoming atmosphere as possible, despite some of the medical-grade equipment they had in the home.

    A Legacy of Love

    Opening her eyes after drifting through the memories, she struggled to remember the exact number of lives they had touched. She smiled faintly, knowing the number wasn’t what mattered. In her heart, she knew it was easily over a hundred children who had found safety and love within their walls. Some still sent holiday cards or called on Sundays, their voices echoing through the same halls where they once felt safe enough to simply be themselves. Others had grown up and moved on, but pieces of them remained—the pencil lines marking heights on the bathroom doorframe, colorful handprints on the garden wall, and names carefully carved into the bench that lined the dining room.

    Their first child went on to follow in both of their mothers’ footsteps, becoming not only a social worker and an educator but also a passionate advocate for all children in the foster care system. They helped raise funds to start a group of foster homes specifically designed for disabled and LGBTQ youth, aptly named ‘Next Chapter Homes’—a legacy that she and Janis had only dreamed of when they first sketched floor plans on the back of old notebooks in their drafty first apartment. Proof that love, when shared freely, could outlast a lifetime.

    They had fostered right up until the moment she received her terminal diagnosis. Even then, their focus remained on the children. They made sure every child in their care transitioned to new homes with as much love and care as possible. They spoke to each child honestly, explaining that sometimes even the strongest love stories had to change shape.

    She had no regrets. Her life had been filled with the kind of love she had once only dreamed of as a child. She thought of their first apartment—the drafty one-bedroom with thin walls and a kitchen table that wobbled if you leaned too hard. Even then, they had imagined a home filled with love and intention. What started in that tiny space, with whispered dreams and sketched blueprints, had blossomed into a sanctuary where every child could find safety and warmth. The home they built together had grown, but the love at its foundation had never wavered.

    The home they had built would remain a refuge, a testament to what was possible when love was not just a feeling but an action, a promise kept. Their home would remain, a lighthouse for those still finding their way through the storm. It would always be that rock that so many children over the years had come to depend on.

    Each room held echoes of laughter and healing, each wall painted with intention. What they had created was more than just a shelter—it was a legacy of love and acceptance that would continue to guide those who needed it most. The new children who found their way here would add their own stories to the pencil-marked doorframes, proof that love could stretch across generations.

    The Final Breath

    She wanted to go quietly, slipping away on the gentle current of her memories, leaving only peace behind. Janis, still cradled in the comfort of their home, continued to sleep, surrounded by the echoes of a life well-lived. When Janis awoke to the gentle morning light, she would carry forward the love they had always shared, now woven into every corner of their home.

    She drew in a final, slow breath, the air warm and steady in her chest, a quiet ember of life glowing soft and low. She held it know it was to be her last. It also seemed as if the house they had built together was holding its breath right along with her as the house all of a sudden because still and calm. 

    As it slipped from her lips, so gentle it was almost a sigh, a serene stillness filled the room. Her face remained soft, a smile resting there, as if she had simply drifted into a sweet dream.

    Outside, the first light of morning crept through the window, pooling around the room, brushing against the soft curve of her smile and the worn edges of the paperback in her wife’s hand. The house remained hushed, as if honoring her wish for quiet. 

    Outside the light caught on the colorful handprints on the garden wall and in the dinning room the names carved into the old bench, each a memory pressed into wood and paint. It was a new day—a continuation of the legacy she had helped build. 

    And somewhere, in the quiet of a child’s safe sleep or the joy of a new home found, the light she had carried through shadows into each child’s story remained—steady as a lighthouse beam, unwavering. A glow that would burn on, soft and endless, a promise etched into the walls of their home and into the hearts that had found refuge there.

  • 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


    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.”

    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

    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

  • 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.