In this Staff View column, Steve Romenesko, advisor to the college’s new TRIO Support services for students with disabilities program, explains why it is so important to provide resources to enable all members of our University community to be successful.
I like to joke with those around me that although I have worked with students for a decade, my longest job is being a âprofessional patientâ for the past 20 years. years. When I was 12, I was diagnosed with primary sclerosing 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 rapidly worsening case of PSC, I had my first liver transplant when I was 14, just as I was recovering in high school. While many other students worried about adjusting to a new school, approaching adulthood, and learning to drive, I worried about surviving the next few months until I had my transplant.
Fortunately, after my transplant, I was able to live what many would call a normal life. I caught up after missing several weeks of class, working on healing, and finally being able to return to high school. I was taking at least 30 different pills a day, had dozens of prescriptions, and had blood drawn as often as once a week while going through my experiences as a teenager. All of this led to the exciting graduation crescendo; as a person who only had a few weeks to live at the start of high school, it was amazing to be able to graduate. With her came celebration, but also new questions as I packed my bags and headed to the University of Wisconsin-La Crosse, a three-hour drive from my hometown of Appleton, Wisconsin. My mom called it “too far”, as I wondered if it was far enough to try a lean version of life 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 tests. My parents and I planned how to get to the ER if needed, and we scheduled my specialist doctor appointments to hopefully fall during breaks and summer vacation.
When I entered college, there weren’t a lot of discussions or considerations about disability services on campus; I don’t think there was even a conversation about the word âdisabilityâ and how it relates to me. Part of my college orientation involved not only learning where my classes would be and how to navigate around campus, but also how to navigate the city bus system in order to get to the local hospital for blood tests. My parents and I planned how to get to the ER if needed, and we scheduled my specialist doctor appointments to hopefully fall during breaks and summer vacation.
Throughout college my liver condition started to improve again and my ulcerative colitis was never so well controlled. In my second year, my liver enzyme blood test results started showing a recurrence of PSC and I spent a lot of time in the hospital receiving antibiotics and other drugs intravenously. . I would come back to campus with self-administered intravenous drugs and possibly a bile drain – a tube coming out of my bile duct that drained bile into a bag attached to my leg. I missed a lot of classes and struggled with the weight of having to frequently see specialists in Madison while balancing my classes and my campus commitments.
During all of this, I counted on the good graces of my teachers, work supervisors and friends around me so as not to run into academic problems. I often felt like I was the only âprofessional patientâ on campus. I’ve heard whispers and stories from other people with chronic issues or disabilities on campus, but I’ve never really met any of them. I didn’t have any mentors or teachers who knew what I was going through – and although most were remarkably supportive, many didn’t know how to relate to my experiences.
I didn’t even think of the Disability Services Office on campus because I had a very narrow conception of âdisabilityâ, and that didn’t apply to me. My conception of disability was that it was mostly mobility issues or very visible disabilities, and I didn’t fit into any of those categories. Eventually I signed up for accommodations after struggling with a teacher, but never really used them or thought about what that meant to me as a student; I didn’t feel like I had someone to talk to about it.
I was able to graduate after taking a lighter course load each semester and taking five years to graduate. With my BA in Spanish and teaching English to speakers of other languages ââin hand, I prepared for graduate studies at the University of St. Thomas for a Masters in Student Business Leadership knowing that I wanted to work with students. I graduated with my family and the family of my liver donor around to celebrate – but against the backdrop of being on the liver transplant waiting list due to the progression of PSC.
Eventually I got my masters degree, got a job at Carleton College in Residence Life, got a second liver transplant when I was 25, jumped over the Cannon River for working at St. Olaf College and I had my colon removed due to worsening ulcerative colitis. .
I reflect on all of these pieces of my story because this year I started working as an academic advisor at the new office of TRIO Student Support Services for Students with Disabilities (SSSD), which is truly a dream job for me. me. As a student, I didn’t have anyone to talk to about disability who knew what it was like to face what I did as an undergraduate student. Now I am becoming that person for our students!
As a student I didn’t have anyone to talk to about disability who knew what it was like to face what I did as an undergraduate student. Now I am becoming that person for our students!
In short and bluntly, what we do at SSSD is support students. We take the lens of disability into account in everything we do, and provide support to students with disabilities as they navigate their experience in St. Olaf, which can often feel different and difficult. We know we have a large population of students with disabilities on campus, and we know they graduate at lower rates than their peers who don’t face the same issues. In order to tackle this problem, we are taking a multi-pronged approach.
SSSD staff advisers meet regularly with students to get to know them and provide additional support. SSSD regularly hosts workshops focusing on topics such as financial literacy, vocation, study skills and general topics on ‘living with a disability’, and we offer what I consider our greatest support: a community of peers. We are intentionally working in our program to create a base of support with St. Olaf students facing similar issues at university; students can help, comfort, and befriend each other. I would be remiss if I did not yell at the wonderful Disability and Accommodation Office (DAC) on campus as they are able to help students get housing and work to develop life skills in order to ‘be another support for students with disabilities. All SSSD students go through the DAC in our application process, and they are incredible support for all students on campus.
In addition to supporting students, SSSD strives to advance the conversation about disability on campus. Higher education can be a scary world locked behind so many ability doors that make life unnecessarily difficult for students with disabilities, and we are here to partner with so many other amazing staff, faculty and students to remove these barriers. . As of now, I haven’t seen many conversations about disability on campus on a large scale, and our goal at SSSD is to make the campus a more welcoming and friendly place for our students by having these difficult conversations.
Higher education can be a scary world locked behind so many ability doors that make life unnecessarily difficult for students with disabilities, and we are here to partner with so many other amazing staff, faculty and students to remove these barriers. .
I am excited about the many partners in the St. Olaf community who will be working with us on this noble goal and hopefully one day we can make the campus an easier place to navigate for students like the youngest me. and other students facing barriers due to their ability status. If you think the Support Services for Students with Disabilities could be of assistance to 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.