Episode 10: College Life, Wheelchair Style

College was supposed to be the next exciting chapter…

But before classes even began, I was already facing obstacles I never expected.

In this episode of Resilience with Tasha Schuh, I share what it was like to leave home, choose a college, and discover just how inaccessible the world could be after my injury.

From finding the right campus and navigating caregivers to learning independence, advocating for accommodations, and adjusting to college life, this season stretched me in ways I never imagined.

In this episode:

• Choosing the college that felt like home
• Discovering the realities of accessibility
• Moving away from home and starting over
• Learning independence and self-advocacy
• The unexpected lessons that shaped my first year of college

This chapter wasn't just about earning a degree.

It was about discovering who I was becoming.

Next time on Resilience with Tasha Schuh:
I'll share how my faith became a life-changing part of my college journey and the unexpected ways God began shaping my purpose through one of the most transformative seasons of my life.

Learn more about my resilience coaching and speaking at: https://TashaSchuh.com

I would also love to hear from you. If there are topics you’d like me to cover or guests you’d love to hear from, please reach out and share your ideas with me at: Tasha@TashaSchuh.com

If this episode encouraged you, please subscribe to the podcast and share it with someone who could use hope and resilience today.

Transcript

SPEAKER_00 0:09

Welcome back to Resilience with Tasha Shu. I'm your host, Tasha Shu, and I am so grateful that you are joining me today. If you've been following along in this journey, thank you. Thank you from the bottom of my heart. Now, in the last episode, I shared what my senior year of high school looked like after my injury. We talked about learning my new normal, navigating friendships, wheelchair camp, major surgery, family challenges, and ultimately reaching high school graduation. It was a season filled with uncertainty, growth, learning how to move forward when life looked nothing like I had planned. As I look back on that time, I realized I was also learning one of the most important lessons of resilience. Because people often think resilience means bouncing back after a challenge. And I've used that definition before. But as I examine my story and journey all over again with this podcast, I see that resilience has not been about bouncing back because sometimes life changes in ways that make going back impossible. To me, the more I learn and grow in this journey, I see that resilience is choosing to keep going through difficult challenges. It's finding a way forward when the road ahead feels uncertain. It's continuing to hope, learn, adapt, grow, even when you don't have all the answers. And as I graduated from high school and began thinking about the next chapter of my life, that lesson was about to become more important than ever. Because while earning my diploma felt like a huge accomplishment, it also came with a question: what was next? And like many graduates, I was thinking about college, my future, and what kind of life I wanted to build. But unlike many of my classmates, every decision came with additional obstacles that I had never considered before my injury. Questions about accessibility, transportation, and personal care. Questions about whether colleges were truly prepared to welcome a student who used a power wheelchair and needed daily assistance. So in this episode, I'm going to take you through the process of choosing a college, the challenges that we encountered along the way, the realities of accessibility and the late 1990s, and how those experiences shaped my confidence, independent, and future. Because sometimes resilience isn't about overcoming the challenges you expect. Sometimes it's about discovering the challenges you never saw coming and finding a new way forward anyway. So I'm so glad you're here. Let's get started with episode 10, college life wheelchair style. So, as I mentioned in the last episode, I had a school psychologist who was absolutely determined that I was going to go to college. At the time, I wasn't so sure. Everything in my life felt uncertain, and there were so many obstacles that stood between me and what most people considered a normal college experience. But she refused to let me limit my future based on my disability. So together we began looking at options. And wheelchair accessibility was the biggest factor in our decision. Prior to my injury, I had never paid much attention to accessibility. I mean, why would I? Like most people, I simply assumed that if a building existed, people could get into it. But after my injury, I started seeing the world through a completely different lens. I'll never forget the first time I rolled through downtown Ellsworth after coming home from rehab. As we went down Main Street, I found myself looking at each business and thinking, I can't go there, I can't go there, I can't go there. Many of the businesses had one or two steps at the entrance and were grandfathered in under accessibility laws. They weren't required to make changes, so they remained inaccessible. It was a rude awakening because for the first time I realized how many places in this world were simply not built for people like me, people with disabilities. And places that other people entered without a second thought suddenly became places I couldn't access at all. And honestly, it was heartbreaking. I had already lost so much independence after my injury. Now I was discovering that even if I wanted to participate, there were many places that simply weren't designed to welcome me. And that reality became even more apparent as I started looking at colleges. Every campus tour was more than academics, friendships and dorm life. I was asking a much more basic question: can I even get in the building? Now, I had always wanted to attend the University of Wisconsin River Falls. Before my accident, that had been the plan. My boyfriend and I had talked about finding a house and moving in together in Ellsworth. Because River Falls was only about 15 miles away, I planned to commute to college for my classes. But after my injury, Travis and I breaking up, River Falls still seemed like it would be a possibility for different reasons. I had a friend who wanted to room with me and had even offered to help with my daily cares if we lived together. Between its close proximity to home and the support I thought I would have, it seemed like a perfect fit. So we scheduled a campus visit. And as they took us around campus, I quickly began noticing things I had never paid attention to before my injury. Steps. And then even more steps. And many of the elevators were hidden behind locked doors, tucked away in kitchens, or located in places that truly were not accessible to students. And the more I saw, the more discouraged I became. Now, when the tour ended, I sat down with one of the staff members and asked what accommodations were available for students with disabilities. And I'll never forget her response. She simply said, school is the way it is, and if it doesn't work for you, you'll have to find somewhere else to go. Now, today I would have had a very different response. Now I understand disability rights, accessibility laws, and what schools are required to provide. But at 18 years old, I didn't know any of that. I simply took her words at face value. And just like that, I crossed UW River Falls off my list. Now I thought that would be the end of my college searching, but my school psychologist reminded me that there were other options. So next, I looked at the University of Wisconsin Stout in Menominee. My brother and my mom had gone there, and it was about 45 minutes from my home. So I thought this is doable. It also had a reputation for being what many people called the wheelchair college because so many students with disabilities attended school there because they had a huge vocational rehabilitation program. So I thought this might be the answer. But when I toured the campus, I learned that I would be assigned a standard dorm room. How would my big power wheelchair, or even a manual wheelchair if I was able to use one, work in a small dorm room? People who are walking barely fit into these rooms. But the bigger concern for me was the bathroom situation. When it was time to shower, I was told that I would need to wheel down the hallway in my shower chair with my caregivers and use the communal shower facilities with everyone else on the floor. No way that was going to happen. I am a very private person. I have some very personal cares with my disability, and there's no way that I can make that work. So looking at the situation, I was seeing that there was no way that my power wheelchair equipment and daily care needs were going to fit comfortably into a traditional dorm room setup. Again, just didn't feel right. So crossed stout off the list. Then my school psychologist suggested a school I had never even considered, Winona State University. Honestly, I did not know much about it. I wasn't even entirely sure where Winona was, but we scheduled a tour, and the moment I rolled onto campus, something felt different. For the first time, I wasn't looking for all the reasons a school wouldn't work. I was seeing all the reasons it could. The buildings were accessible, there were automatic door openers, elevators were readily available, and the campus felt welcoming instead of limiting. Then they showed me the housing options. Instead of a traditional dorm room, they had accessible apartments for students with disabilities. I could have my own bedroom, living room, kitchen, and bathroom designed to meet my needs. And even more incredible, they were willing to modify the apartment with a roll and shower and install an automatic door opener so I could come and go independently. Now, for someone who had spent the past year depending on help for nearly everything, that level of independence felt life-changing. I knew almost immediately this was where I was supposed to be. Now, at the time, I planned a major in psychology. I had loved my psychology class in high school. And after everything that I had been through, I wanted to help people. I wanted to understand why people think the way they do, how they cope with challenges, and how they heal after difficult experiences. So, with excitement, a little fear, and a whole lot of unknowns ahead of me, I made my decision. I was going to attend Winona State University and pursue a degree in psychology. But once I made the decision to attend Winona State University, the excitement quickly collided with reality. There were two major obstacles standing in my way. The first was distance. Winona was about an hour and a half from home. Up until that point, my mom had been heavily involved in my daily care. If something went wrong, she was there. If I needed help, she was there. But if I moved to Winona, that safety net would no longer be right down the road. The second obstacle was even bigger. Winona State University was located in Minnesota. At the time, I was receiving Wisconsin Medicaid benefits, and those benefits did not transfer across state lines. So if I attended school in Minnesota, Wisconsin Medicaid would not pay for my caregivers. This was a huge problem because I could not attend college without personal care assistance. I needed help getting dressed, getting into bed, help showering. I needed help with many of the daily cat tasks that most people never think twice about. And yet, despite these enormous obstacles, I never seriously considered changing my mind. I just knew. As strange as that may sound, I knew this was where I was supposed to be. And during that season of my life, my faith was beginning to grow in ways that I didn't fully understand yet. And I'll talk much more about that journey in the next episode. But looking back, I can see that God was already at work in my heart. I didn't have a roadmap. I didn't have solutions. I didn't have any guarantee that this would work. But deep down, I felt a sense of peace about Winona State that I couldn't explain. The practical side of that decision did not make much sense. The caregiver situation wasn't figured out. The financial pieces weren't figured out. And yet every time I thought about Winona State, I felt certain. I truly believed that this is where I was supposed to be. And that conviction became my anchor whenever people questioned the decision or pointed out all the reasons it might not work. Now, people kept encouraging me because of this to look at other schools in Wisconsin. They say, wouldn't it be easier if you stayed closer to home? Or maybe you should choose a Wisconsin school so the caregiver situation isn't so complicated. And those were all valid concerns. But every time someone suggested another option, I found myself saying the same thing. No, this is where I'm going. I didn't have all the answers, but I knew somehow it was going to work out. Now, around this time, another significant piece of my story was unfolding. Our lawsuit was finally coming to a settlement. And for those of you who don't want to know the details deeper than what I'm going to share here in this podcast, I go into much greater depth in my book, My Last Step Backward. But what I do want you to know, it never went to trial. And there are many parts of that story that I'll likely share in a future podcast episode. But what I would discover through this is that there are a lot of misconceptions about settlements involving catastrophic injuries. Many people look at it as though I had won the lottery, as though everything would suddenly be okay. As though receiving a settlement somehow took away all my problems and fixed my life. People are like, congratulations. I'm like, what? Congratulations? Nothing could have been further from the truth because, in a heartbeat, I would have given every penny back to have my old life back. This was not a victory. This wasn't a celebration. This simply was what necessary what was necessary for me to move forward. Because the reality is that living with a significant disability is incredibly expensive. There's caregivers, medical equipment, wheelchairs, vehicle modifications, home modifications, medical supplies, and countless other expenses that most people never have to think about. And I'm sure I'll bring talk about it more in a future episode. Because I don't think most people realize what it actually costs to live with a disability. But thankfully, we were able to reach a settlement without going to trial. And for that, I was grateful because I was ready for that chapter of my life to be over. I wanted to stop reliving the details of the accident. I wanted to stop dealing with depositions and legal proceedings. I wanted to move forward with my life. But one thing that became very clear during that process was that this accident could have been prevented in many ways. There were mistakes made. There was negligence. And I'll share this probably in another future episode. And again, I covered it in my book if you want to read about it now. But I just want to be clear about something. I never carried hatred toward the people involved. Did I experience anger? Absolutely. Did I experience frustration? Of course. But I never believed anyone intended for this to happen. The people who were there that day were devastated by what happened. Their lives were changed too. So, as difficult as it was, I chose not to spend my life holding on to bitterness. Instead, I was thankful that the school's insurance company was finally willing to help provide the resources that I would need to move forward. Because while the settlement could never give me my old life back, it would help provide the care, equipment, and support I would need to build a new one. So, as difficult as that season was, and the reason that I'm sharing this right here in this episode of this podcast is because it also brought an unexpected answer to the caregiver dilemma that had been hanging over my head to attend Winona State. So, as part of the settlement, I would no longer qualify for Wisconsin Medicaid. Now, at first glance, that may have sounded like another problem, but it actually opened a door. The settlement provided resources that could help pay for the care that I would need moving forward. And suddenly, three days before I was scheduled to move to Winona, the impossible started becoming possible. Instead of relying on Medicaid funding, I could pay out of pocket for caregiving services through a home health agency in Winona. Now, at the same time, I was also lining up additional support. A few students from Ellsworth were attending Winona State and had offered to work for me as caregivers. And then there was also Brooke Hines. After my accident, Brooke and I had become much closer friends. We had been friends since middle school, but after the accident, we started hanging out more. We were getting much closer. And as she was considering attending Winona State herself for nursing, I approached her about being my roommate. To be completely honest, I didn't think I could do college without a roommate that I knew and trusted. Not only would Brooke be someone familiar in a brand new environment, but she was also willing to help with my cares. She said yes. And that changed everything. It was all falling into place. I even had a roommate. So Brooke and I registered for many of the same classes so she could help me with note-taking and other things throughout the day. So looking back, I can only imagine what my mom must have been feeling during that time. I was excited. She was terrified. Not because she didn't believe in me, but because she loved me. And for over a year, she'd been helping me coordinate every aspect of my care and of my life. Now her daughter was preparing to move an hour and a half away from home. And there were still countless unknowns. There were still plenty of reasons that this plan shouldn't work. But we moved forward anyway. So before classes began, the plan was that my mom would travel to Inona and spend time teaching my new caregivers how to do my cares. The home health agency would assign one primary caregiver who would handle the majority of my care needs. But other caregivers would fill in when she wasn't available because she also had other clients to care for. Or they would help her as I usually had two caregivers working at the same time, both morning and night. So little by little, piece by piece, the support system began coming together. The dream that had once seemed impossible was becoming reality. I was actually going to college. So exciting. So towards the end of August, my parents packed up my belongings. Brooke and I moved into our apartment, and suddenly the reality of college became very real. I was an hour and a half away from home. I had new caregivers, a new routine, new responsibilities, and a whole new life waiting for me. And I remember feeling excited and terrified at the same time. Now, for the first week, I was focused on settling in and learning how everything would work. My mom stayed for that first week, trained everybody in, make sure everyone understood my routine. Meanwhile, I was trying to adjust to having people I barely knew helping me with some of the most personal aspects of my life. And it was a lot. But little by little I started getting comfortable. The routine started coming together, the apartment began feeling like home. And at this point, I knew this was where I was supposed to be. I was determined not to look back and give college everything I had. And before I knew it, classes were about to begin. But as I prepared for my first day of college, I was also facing another reality that was much harder for me to accept. I was realizing that I had to let go of the dream of using a manual wheelchair. For nearly one year, I had held onto the hope that someday I would be able to use one. In my mind, a manual wheelchair represented progress, independence, normalcy, maybe even acceptance. But as soon as I began spending time on the Winona State campus, reality set in. While the grounds were relatively small compared to many universities, it was still a college campus. I would be traveling back and forth between multiple classes every day, going to the cafeteria, going back to my apartment. And there was simply no way that I could physically propel a manual wheelchair those distances day after day. Now keep in mind that my tricep muscles are in the back of your arms. They're paralyzed. Therefore making propelling and pushing extremely difficult. Not only that, but not having any finger movement. So at first I was disappointed, but eventually I realized something important. My power wheelchair wasn't a limitation. It gave me freedom, it gave me independence, and it allowed me to use my energy on things that actually mattered instead of exhausting myself just to try to get from one place to another. And if I'm being completely honest, I also realized part of my resistance had nothing to do with practicality. It had to do with what I thought other people thought. Somewhere deep down, I believed a powered wheelchair made me look more disabled. And then one day I had the simple realization I had a disability. That wasn't a secret. That wasn't surprising anyone. And worrying about how disabled I appeared wasn't helping me live my life. I needed to make decisions based on my long term health, my independence, and what would allow me to thrive, not on what I thought other people might think. And I thought I had learned this with my Tinodisis splint, but it crept back in again. And I would need to be continuously reminded of this lesson. But it did serve me well throughout college. Now, as for classes, I decided to take, I can't remember if it was 12 or 15 credits, but I had a full-time college schedule. No, I didn't, I intentionally didn't take on more than I thought I could do because I knew I was learning how to navigate an entirely new chapter of my life. And I wasn't just adjusting college, I was adjusting to living away from home, managing caregivers, advocating for accommodations, and figuring out how to be independent. Now, I do have to confess something quite hilarious. When I built my class schedule, I arranged it around the three soap operas I watched every day. There was no way I was going to be missing those. Days of Our Lives, The Young and the Restless, and Passions. I was absolutely convinced that this was a brilliant plan. But what I didn't realize was that college involved a lot more than simply showing up to class. I had no idea what a syllabus was. No one had explained that professors expected you to read your textbooks outside of class. I just thought you attended class, listened, took notes, and went home. I was taking naps, I was watching soap operas, but I quickly discovered there was so much. There were chapters to read, assignments to complete, and tests to study for. College was a huge wake-up call, and it was much harder than high school. And I realized very quickly that if I wanted to succeed, I was going to have to become a lot more organized. However, this would take some time to implement, but at least I was recognizing it now and was heading in the right direction. Now, one thing that did help with my studies was the fact that I was receiving accommodations for my disability. One of the accommodations I received was access to note takers in every class. So during my first semester, Brooke helped with much of my note-taking because we shared many of the same classes. But after that, our schedules became very different. And at the beginning of each semester, I would meet with my professors and explain the accommodations that I needed. Then on the first day of class, the professor would stand in front of everyone and announce, there's a student in the class who needs a note taker. Immediately, every head in the room would turn and look at me. It's a little uncomfortable. There was no hiding who the student with a disability was. But thankfully, there was always someone willing to help. Now back then, note taking looked very different. This was 1999, early 2000s. There were no tablets, no digital note-sharing programs. Instead, my note takers used special photocopy paper given to them by the Disability Resource Center. And as they wrote their notes, a second copy was automatically created underneath. So they could take notes once and I would receive a duplicate copy. And it worked. I also received testing accommodations through Winona State's Disability Resource Center. So whenever I had a quiz or exam, I would go to the testing center to complete it. Now, because I couldn't physically fill in a scan chance sheet, which is what most of my tests were, someone would transfer my answers for me. I would circle the answers on the test or dictate out essays for someone to write for me. Now it sounds straightforward, but I quickly learned that accommodations required self-advocacy. I had to stay on top of my professors. I had to remind them to send my exams to the Disability Resource Center. I had to communicate. And for perhaps the first time in my life, I began realizing that nobody was going to manage these things for me. I had to learn how to do it myself. So the soap operas eventually became less important. Now, unfortunately, there was another habit that followed me to college besides my soap operas, and that was drinking. When Brooke and I moved in, we quickly got to know our neighbors and the other students around us on our floor. And one thing many of us had in common was that we liked to party. Now, most of the bars in Winona weren't accessible, and I wasn't even old enough to drink yet. So we typically stayed in our apartment and drank on the weekends, trying to be quiet so that we did not get in trouble. Now I usually went home about every other weekend, but when I stayed on campus, drinking alcohol often became the center of my social life. I was still trying to numb the fears, the sadness, and uncertainty that I didn't want to face. And alcohol helped me escape for a little while. At least I thought it did. I was very careful about how much I drank because I knew I could not risk getting sick. I didn't want any of my friends or caregivers having to deal with me drinking too much and having to throw up or having other issues. But even when I thought I had everything under control, it wasn't healthy. I was also taking a muscle relaxer called baclefin, and I quickly learned that baclefin and alcohol were not a good combination. My muscle spasms would be out of control the next day. I would struggle to sleep that night, and I would feel the effects long after the party was over. For the first time, I began questioning whether this was really the life I wanted. Because while alcohol temporarily, temporarily distracted me from my problems, it was not helping me heal from them. As if adjusting to college, caregivers' classes, and independence wasn't enough. Another challenge was about to teach me a lesson I would never forget. A few months into my first semester, my mom began noticing that the bills from my caregiving agency seemed incredibly high. She kept telling me something wasn't adding up, and at first I didn't understand what she meant. I was so new to managing caregivers that it never crossed my mind that someone might take advantage of the situation. But as we looked more closely, we discovered a serious problem. My primary caregiver was reporting far more hours than she was actually working. In many cases, she was claiming up to nine hours a day, when she'd only been there for three or four at the most. And even worse, she was forging my name on the timesheets. I was shocked. Not only because I was realizing that there were people out there that could take advantage of someone with a disability, but because I never imagined I needed to be checking every timesheet and every hour that was submitted. When I confronted her, she blamed me. The agency blamed me too. They said I should have been reviewing the paperwork more carefully. Now, maybe that was true, but I was living on my own for the first time, trying to navigate an entirely new world that nobody had prepared me for. It was a painful but valuable lesson. So from that point forward, I decided that I would take a much more active role in managing my care. Rather than working through agencies, I began hiring my own caregivers. I conducted the interviews, I managed the schedules, and in the process, I gained far more control over my life and my care. And I eventually found a new caregiver to replace the primary caregiver from the agency. I moved forward and I never looked back. And I can now see that college wasn't just teaching me psychology, it was teaching me responsibility, self-advocacy, and how to manage the many realities that came with living independently with a disability. And one final thing I remember from my first year of college was how much I wanted friends. Brooke and I did almost everything together at first, but as the semester went on, she began making friends through her classes and activities. And I wanted that too. But I didn't realize was that I was sitting back waiting for friendships to just happen. Now, yes, I had some friends on the floor that I drank with, but they weren't really close friends, like deep friends, and that's what I wanted. But the funny part is I honestly expected people to come knocking on my apartment door and ask me to hang out. That's not how life works. Part of the problem was that I spent a lot of time in my apartment. I was freezing cold all the time. Winona Winters felt brutal to me, and going from class to class was cold because I couldn't take a jacket off independently once I got to class. I usually just layered up with a sweatshirt and hurried where I needed to go. And then I would come back to my apartment, crank up the heat, and stay there as close to the heater as I could get. Now looking back, I can see that I wanted friendships, but I wasn't always putting myself in places where those friendships could grow. Now there was, however, one expected moment that gave me a boost of confidence. After moving into our apartment, we realized the cable hadn't been hooked up properly. So we had we had these two cable technicians come out to fix it. And later that evening, there was a knock at our door. And when Brooke opened it, the younger of the two technicians was standing there. He asked if he could talk to me. Now I assumed he was there about the cable. So as I rolled out in the hallway, I said, Is everything okay? And then as he fumbled, he said, Actually, I'm wondering if I could take you out on a date. I was completely shocked. At that point, I was newly single. I had broken up with my boyfriend from Texas. I wanted to focus on myself and college. And he handed me his phone number, told me to call him. I never did. I was far too scared. But I remember feeling incredibly flattered. For so long, I had wondered if anyone would ever see me as more than a girl in a wheelchair. And here was someone who had. Now I wasn't ready to take that step yet, but it was a reminder that maybe the future held more possibilities than I realized. So as I look back on that first year of college, I realized that it was so much more than classes and grades. It was a year of learning independence, learning self-advocacy, learning how to manage caregivers, learning how to navigate friendships, and learning that resilience isn't just about surviving life's challenges. It's about continuing to grow through them. There were moments when I was scared, moments when I felt lonely, moments when I wondered if I was truly capable of building a life away from home. But with every challenge, I gained a little more confidence, a little more independence, and a little more belief in myself. So thank you so much for joining me for episode 10, College Life Wheelchair Style. If you've enjoyed this episode, I would be so grateful if you would subscribe to the podcast and share it with someone who might enjoy hearing my story. Because whether they're facing challenges of their own, navigating a difficult season, interested in learning more about life with a disability, or simply looking for a story of resilience and hope, I would be honored if you shared this journey with them. And if this episode resonated with you, I would love for you to leave a review. It helps more people discover the podcast and join our growing community. So next time I'll share how my faith became a much bigger part of my life during this season. While college was teaching me about independence and responsibility, God was quietly doing a work in my life that would change the direction of my life in ways I could have never imagined. So next time we're going to talk about faith, purpose, the people who influenced me during those years, and how God continued to use my college experience to shape who I was becoming. So until next time, remember that resilience is about having all the answers sometimes and simply having the courage to keep moving forward one day at a time. Thanks for listening, and I'll see you next time on Resilience with Tasha Shuffle!