Disability and College
By: Kendall Ciesemier
Attending college with a chronic illness or disability is difficult, particularly because you are likely away from home and also void of legal protections and accommodations that may have been extended to you in public K-12 education.
After undergoing two liver transplants, I was left with a surgical complication that caused me to have severe liver infections. These infections left untreated would escalate into blood infections, or sepsis, and these are deadly. In order to prevent them, I had a stent placed in my liver that needed to be changed out every 6 weeks. But the solution was flawed and the infections would strike again with complete unpredictability. The infections would last anywhere from a week to a month and require inpatient stays as well as outpatient IV treatment, depending on the severity.
Regardless of whether or not I wanted my illness to be a consideration of what school I attended, the reality was that I needed to find an institution that would be accommodating of my illness and the very certain amount of uncertainty that it brought to my life.
Here’s how I navigated the college experience from start to finish:
Before Applying: Proximity to Hospital
I began my college search by only applying to schools that I knew had good teaching hospitals nearby, hospitals that I could rely on when things went haywire and I needed immediate quality care. That way I wouldn’t fall in love with and get accepted to an institution that wouldn’t be smart for me to attend. The good thing is that many higher learning institutions have medical schools and that means they have a teaching hospital nearby.
Before Accepting: Ask Hard Questions
Once accepted to schools, I found it incredibly important to visit, or if not possible, talk on the phone with the office that runs accommodations for people with disabilities that are protected under the American Disabilities Act. The office is usually called something like “Office of Accessible Education,” or at my school, it was “Academic Resources.”
I made sure to schedule a meeting or a phone call with the staff at that office. Then, I very clearly explained my situation and what kind of accommodations I would need, based off of my experience in high school. Sometimes those offices will ask to have documentation ready to prove a need for accommodation, but once you have that paperwork on file, there won't be more questions. This office is entirely separate from admissions so disclosing any kind of medical information is private and they can’t rescind your college acceptance regardless of whatever you tell them.
These meetings were really important and provided a lot of clarity to understand how each institution I was admitted to would deal with my illness and how much they would support me in my effort to succeed as any other student at the school. Through these conversations, I came to understand that some institutions had seemed really accommodating but in reality, they weren’t. If my disability had been predictable and static like using a wheelchair or a hearing aid, they could accommodate me, but because my accommodations consisted of needing flexibility around attendance and a longer timeframe to complete assignments should I ever end up in the hospital, they could guarantee me far less tolerance and support.
In fact, I was admitted to Harvard University and upon meeting the staff that ran the Office of Accessible Education, I was told that my “K-12 education was a right and this education, this Harvard education, was a privilege.” They told me that they would be unable to guarantee accommodations and that should I miss sitting for a final in May, for example, I wouldn’t be permitted to take it until the following semester in November. That seemed unworkable to me. And good thing I really listened to their answers and accepted them as truth because I spent four of my eight finals periods in the hospital while studying at Georgetown University and I took those finals from my hospital bed or bedroom in the suburbs of Chicago, proctored by my parents. I still think about how I would have managed Harvard given their inflexibility and I am relieved that I asked the hard questions and made an informed decision to not attend.
It’s really important to ask for what exactly you will need and get the school's take on what they can provide. Do they have rules around attendance that are not flexible? Do they have rules around sitting for finals? Do they prohibit or impede you from taking more than four years to get your degree? What happens if you take a medical leave? What happens if you fall ill in the middle of a semester? Think of every possible situation that could happen in your life, given your disability and ask those hard questions.
And then, really listen to their answers. It’s important to not be in denial about your limitations because you want to set yourself up for success, not failure. When your health declines, the last stress you need is to be navigating a bureaucratic system full of rules and sometimes fallible and misguided able-bodied people. You want to do the navigating now, before you commit to the institution.
At College: Know your professors
At the beginning of every semester at Georgetown, I had a slip of paper provided by Academic Resources that listed out the accommodations that I needed. Each professor I took a class with had to sign that slip of paper saying that they understood my accommodations and that they would work with me to succeed in class, regardless of my illness. At first I saw that piece of paper as a very scary and vulnerable experience forced upon me. But, as I began to have those conversations with my professors the first week of class, I realized that those conversations were paramount to my success in college and the compassion and support I’d receive. Here’s my theory: people want to support underdogs. They want to be part of your success story. If you are vulnerable and honest about your life experience and disability, they are far more likely to be accommodating. Sure you shouldn’t have to go the extra mile to build a connection with your professor to be treated fairly. I get that. But the reality is that people with disabilities don’t have equality yet so we may have to go the extra mile to get the same respect and dignity. I found deep and meaningful relationships with my professors largely due to the effort I put into sharing my life with them.
In the end, I chose to take my talents to Georgetown because they wanted all of me, including my illness. Their educational value of "cura personalis" or "care of the whole person" as touted on their website and promotional materials, was something that was reinforced by my meeting with their office of Academic Resources and then again throughout my experience as I continued to have unpredictable medical challenges. Their willingness to accommodate my illness held up the validity of their words. They wanted to find solutions for me because they cared about all of me, not just my brain.I never wanted my decision to just be about my illness because I’m feisty and my illness doesn’t define my life or dictate my success. But at the end of the day, my illness was a large consideration. It had to be. And, I’m glad that I didn’t downplay the situation I was in and what I'd needed to succeed at college. It’s important to be honest with yourself about what you will need to succeed, even if that means deciding not to go to an institution based heavily on the lack of accommodations.