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Staff View: The importance of supporting students with disabilities

Steve Romenesko studies during his time at the University of Wisconsin-LaCrosse.
Steve Romenesko studies during his time at the University of Wisconsin-LaCrosse, where he says he didn’t have anyone to talk to about college life with a disability. In his new role as an advisor with the Student Support Services for Students with Disabilities program at St. Olaf, he says “I get to be that person for our students!”

In this Staff View column, Steve Romenesko, an advisor with the college’s new TRIO Student Support Services for Students with Disabilities program, shares why it’s so important to provide resources to enable all members of our campus community to succeed.

I like to joke with those around me that while I may have worked with students for a decade, the job I’ve held longest is being a “professional sick person” for the last 20 years. At age 12 I was diagnosed with Primary Screlosing Cholangitis (PSC), a progressive liver disease affecting my bile ducts, and Ulcerative Colitis (UC), an Irritable Bowel Disease similar to Crohn’s Disease. Due to a quickly worsening case of PSC, I had my first liver transplant at age 14— just as I was getting my feet under myself in high school. While many other students were worrying about adjusting to being in a new school, moving closer to adulthood, and learning how to drive, I was worrying about surviving the next few months until I had my transplant.

Thankfully, after my transplant I was able to live what many would call a normal life. I caught up after missing a number of weeks of classes, worked on healing, and eventually was able to go back to high school. I took 30 or more different pills a day, had dozens of prescriptions, and went in for blood draws as frequently as once a week while navigating my adolescent experiences. All of this led to the exciting crescendo of graduation; as somebody who only had a few weeks to live at the beginning of high school, it was amazing to be able to receive my diploma. With it came celebration, but also new questions as I packed up and headed to college at the University of Wisconsin-La Crosse, a three-hour drive from my hometown of Appleton, Wisconsin. My mom called it “too far away,” while I wondered if it was far enough away to try a light version of living on my own for the first time.

Part of my college orientation involved not only learning where my classes would be and how to navigate campus, but also how to navigate the city bus system in order to get to the local hospital for blood draws. My parents and I made plans on how to get to the Emergency Room if I needed, and we mapped out my specialist doctor appointments to hopefully fall over breaks and summer vacation.

When I entered college, there wasn’t a lot of talk or any consideration of disability services on campus; I don’t think there was even a conversation on the word “disability” and how it related to me. Part of my college orientation involved not only learning where my classes would be and how to navigate campus, but also how to navigate the city bus system in order to get to the local hospital for blood draws. My parents and I made plans on how to get to the Emergency Room if I needed, and we mapped out my specialist doctor appointments to hopefully fall over breaks and summer vacation.

Steve Romenesko jokes around while in the hospital, where he spent a good amount of time during college.

Throughout college my liver condition started progressing again, and my Ulcerative Colitis was never really that well controlled. In my sophomore year my liver enzyme blood test results started to show PSC recurrence, and I spent a good amount of time in the hospital getting antibiotics and other intravenous medication. I’d show up back on campus with IV medications I’d administer myself and eventually a biliary drain — a tube coming out of my bile duct that drained bile to a bag strapped to my leg. I missed a lot of class and struggled with the weight of needing to frequently see specialists in Madison while balancing my coursework and my involvements on campus.

During all of this, I relied on the good graces of my professors, work supervisors, and friends around me in order to not run into academic issues. It often felt like I was the only “professional sick person” on campus. I heard whispers and stories of other people dealing with chronic issues or disability on campus, but I never really met any of them. I didn’t have any mentors or professors who knew what I was going through — and while most were outstandingly supportive, many didn’t know how to relate to my experiences.

I didn’t even think about the disability services office on campus because I had a very narrow conception of “disability,” and it didn’t involve me. My conception of disability was that it was primarily mobility issues or very visible disabilities, and I didn’t fall into either of those categories. Eventually I registered for accommodations after I ran into difficulties with a professor, but I never really used them or thought about what it meant for me as a student; I didn’t feel like I had anybody to talk about it with.

Steve Romenesko and his dad after speaking at an organ donation night on campus.
Steve Romenesko and his dad after speaking at an organ donation night on campus.

I was able to graduate after taking a lighter class load each semester and taking five years to complete my degree. With my bachelor’s degree in Spanish and Teaching English to Speakers of Other Languages in hand, I prepared to head to graduate school at the University of St. Thomas to earn a Masters in Leadership in Student Affairs, knowing that I wanted to work with students. I graduated with my family and the family of my liver donor around me to celebrate — but against the backdrop of finding myself back on the liver transplant waiting list due to progressing PSC.

Eventually I graduated with my master’s degree, got a job at Carleton College in Residence Life, had a second liver transplant at age 25, jumped over the Cannon River to work at St. Olaf College, and had my colon removed due to worsening Ulcerative Colitis.

I reflect on all these pieces of my story because this year I started work as an academic advisor in the new TRIO Student Support Services for Students with Disabilities (SSSD) Office, which is truly a dream job for me. As a student, I didn’t have anybody to talk to about disability who knew what it was like to face what I did as an undergraduate student. Now I get to be that person for our students!

As a student, I didn’t have anybody to talk to about disability who knew what it was like to face what I did as an undergraduate student. Now I get to be that person for our students!

To put it short and bluntly, what we do in SSSD is have students’ backs. We factor in the lens of disability into everything we do, and we provide support for students with disabilities as they navigate their St. Olaf experience, which can often feel othering and difficult. We know that we have a large population of students with disabilities on campus, and we know that they graduate at lower rates than their peers who don’t face the same issues. In order to combat this issue, we take a multi-pronged approach.

SSSD staff advisors meet with students on a regular basis in order to get to know them and be an extra support. SSSD puts on regular workshops focused on topics like financial literacy, vocation, study skills, and general “life with a disability” topics, and we offer what I think of as our strongest support: a community of peers. We work intentionally in our program to create a base of support with St. Olaf students facing similar issues while in college; students can help teach one another, comfort one another, and befriend one another. I’d be remiss if I didn’t shout out the wonderful Disability and Accommodations (DAC) office on campus, as they’re able to help students get accommodations and work to develop life skills to be another support for students with disabilities. All students within SSSD come through DAC in our application process, and they’re an amazing support for all students on campus.

Along with supporting students, SSSD is working to further the conversation around disability on campus. Higher education can be a scary world locked behind a lot of ableist gates that make life needlessly difficult for students with disabilities, and we’re here to partner with so many other amazing staff, faculty, and students to remove those barriers. Right now there isn’t a lot of conversation that I’ve seen on campus about disability on campus on a large scale, and our goal in SSSD is to make campus a more welcoming and friendly place for our students by having these hard conversations.

Higher education can be a scary world locked behind a lot of ableist gates that make life needlessly difficult for students with disabilities, and we’re here to partner with so many other amazing staff, faculty, and students to remove those barriers.

I’m excited for the many partners within the St. Olaf community who will work with us on this lofty goal and, hopefully one day, we can make campus an easier place to navigate for students like the younger me and other students facing barriers due to their ability status. If you think Student Support Services for Students with Disabilities is something that would benefit you, please visit www.stolaf.edu/sssd for more information and how to apply.

To learn more about the launch of the new TRIO Support Services for Students with Disabilities (SSSD) program, check out this story on St. Olaf News.