A Long and Winding Road: One Disabled Scientist’s Story

Katie Stofer

Dr. Katie Stofer

Some people think of scientists as “lone wolves” – working in isolation, thinking really hard, and coming up with genius-level ideas that just spring forth from our innate talents and specialness. The reality is that those moments of genius are built on long periods of hard work and, more importantly, a whole system of supports. These supports, whether they are social or financial resources, enable us to do a lot of thinking. Mine is a story of those supports, and how I am able to do my research not only because of them but in spite of my chronic illness, which I’ve just recently come to recognize as a type of disability[1]. It’s also a story of taking life as it comes, not knowing the destination in advance, and charting my own course along the way.

I honestly can’t remember a time I wasn’t interested in science. I was fortunate that my family could encourage this interest through toys and activities, and my teachers saw my interest, too. I was also fortunate to do well in my science classes in school. This assistance was an important first part of my journey that remains today – I am grateful for the people who helped me succeed and fostered my early interest in science through science enrichment and activities, especially during high school and my early college research experiences. But my luck only lasted a while before I, too, came up against obstacles.

A First Obstacle: No More Easy Classes

I don’t remember needing much help with science or math in elementary or high school. Most of my friends all liked math and science, so classes were fun because of their presence. I also took all the advanced science classes I could get in high school and did science fair projects – again with a lot of support from my family (I used our blender to grind up sea anemone to investigate their antibiotic properties). My teachers offered me summer program opportunities after 11^th and 12^th grade – again, because they had seen my interest. My undergrad institution recruited women like me intensively, because there are still fewer women in science compared to men, especially at some of the science-focused schools and programs.

The first obstacle I remember was in college. I went to Caltech, a highly-selective and intense science program, so all of my classmates were also really interested in and “good at” (more on that later) science. It was a shock when we finally came up against science and math classes that we struggled with. The struggles I faced in this program really hit part of my identity hard, as previously, I could easily succeed. It wasn’t an uncommon feeling, as during a particularly frustrating assignment freshman year a friend I was working with just curled up on the floor in despair.

However, by working together, we managed to pass our classes and keep going, and eventually, we realized that we could handle them and find help when we needed it.

Sophomore year of college, I got my first C for a full course. I was upset – I knew I was going to need a good GPA to get into graduate school, which was my only plan at this point. I didn’t really know there were other options for careers in science, at that time. But I had been doing alright otherwise, so my average was still a B, and eventually my GPA climbed back up with my upper-level courses. In retrospect, it was probably college when I first had symptoms of my illness, but I didn’t know it at the time. I do remember not having as much energy as or needing more sleep than my friends did, but nothing that prevented me from having a busy and fun and really intellectually cool time in college.

A Second Obstacle: Needing a Backup Plan

In my senior year of college, I interviewed with several programs for graduate school. I liked the schools and was comforted to hear that once you got an interview, you would get an offer of acceptance. I didn’t. I got waitlisted to only one school and rejected by the others, even after interviews. I remember crying in the dorm kitchen after this. I had no idea what I was going to do. Again, it came down to connections – I took a 12-unit advanced rat neuroscience lab my last term in college, where we recorded signals directly from rat brains. The professor there put me in touch with some of his colleagues who were doing work I was interested in. After a couple of months living at home after college (more support from my family), I got a research assistant job thanks to that connection. At the University of Texas Health Science Center’s Research Imaging Center, I worked with scientists who used functional magnetic resonance imaging (fMRI) to look at people’s brains in real-time while they completed tasks, and saw which areas lit up to determine which areas of the brain are involved in those tasks. I was excited because I thought it would be the perfect chance to get experience with the technology, fMRI, with which I thought I could go on and study human learning.

During that research assistantship, I worked with a Black man and a Hispanic man in the data processing group. I’m white, and I saw that most of the programmers and faculty were too, and our administrative support were Hispanic. It’s hard to know at the time if I faced even unintentional discrimination or if I just didn’t fight for myself. I do know that an undergraduate man was working as a research assistant and running his own studies, while I was relegated to processing data mainly for other people. While faculty commented on the quality and speed of my work, none of them reached out and asked if I wanted to have more responsibility, such as working on other parts of the research. I also didn’t ask.

I decided research was actually too narrow and focused for me, as the work with fMRI at the time focused on much more basic functions such as deciphering Chinese characters and breathing rather than complex applied tasks related to learning. So I turned to a different, more applied, field. I soon decided I wanted to share science with those who didn’t see the beauty of it as I did. It was about this time I started to realize it wasn’t because people lacked interest, but more likely people who struggled in school weren’t getting taught science in a way that resonated with them.

So I went to pursue a master’s degree in science journalism, intending to write and tell stories about scientific discoveries in such a way that everyone could understand and be wowed by them. But then the September 11 terrorist attacks occurred just before I was ready to graduate. Soon the economy tanked and jobs in journalism in particular were scarce, especially for entry-level positions. For the first time, I probably filled out an application without having a contact for a job.

I ended up working a full-time fellowship at NASA Goddard Space Flight Center for 18 months.

I worked as an associate video producer, where I made video clips to support NASA news stories, helped other news outlets access archive video, and wrote a few features and press releases of my own. I covered the ozone hole, ocean plankton, and Earth’s albedo (reflectivity) among other topics.

A Third (and Ongoing) Obstacle: Coming to Terms with My Disability

It was in 2004, just at the end of my time at NASA, that I got my diagnosis of Crohn’s disease. Crohn’s is a kind of chronic inflammatory bowel disease that can cause symptoms ranging from diarrhea and abdominal pain, to weight loss and fatigue. I have been really fortunate that my symptoms have never hospitalized me. Typically, I can eat what I want and have random days where I feel less than 100%. Some of these days I can still muddle through work, while some days I lay in bed sleeping a lot and waiting to feel better.

Shortly after my diagnosis, again through simply applying to an advertised job without a connection, I landed a job at the Maryland Science Center. There I worked on a new exhibit featuring Earth Science and aimed at helping people stay up-to-date on global issues like climate change and local issues like the health of blue crab populations through media and discussions. This was the first job where my symptoms noticeably affected me. The job was a manager-level position, so I spent most of my time in the office creating programming, hiring and overseeing staff, and managing budget. However, I also spent at least 1-2 days each week on the exhibit floor, talking with visitors and presenting my programs.

In early 2006, I started to experience joint pain, which is common with inflammatory auto-immune diseases like Crohn’s. Some days I had to just work through the pain when I was scheduled to be in the exhibit, and some days I was able to go home early or not come in. After a few months, my doctor and I found a medication that worked. While I still had days of general nausea and fatigue, the joint pain was under control, and I was able to work more consistently.

Even though I was enjoying my job, I knew I had higher ambitions, and it was here that my connections came back into play. After about five years, I was itching to do more. I had attended a workshop with a graduate student who had previously worked at the Science Center. She and I got to talking, and she recommended that I explore her graduate program. It turns out that that program had everything I was looking for but didn’t yet know existed. The program, a degree in science education with a concentration in free-choice science learning[2], was a research-based PhD program studying how people learn about science in everyday settings like museums. Basically, it combined my love for research with my love for science communication.

So, I moved again to attend Oregon State University. I was able to go and continue my medications because the graduate student union had negotiated that research assistants would get health insurance as part of their compensation. Graduate school proceeded with the usual stress, I suppose. I was fortunate to have a very hands-off advisor who was flexible in my work hours. I remember at least one full week where I was very ill and unable to work, and I don’t know that my advisor even knew I was ill. The insurance also covered regular colonoscopies to monitor my disease. The flexible work schedule meant that I could take the two days off to prepare for the surgery and the day or so to recover as well.

I graduated in 2013 and took a job as a Research Assistant Professor of STEM Education and Outreach at the University of Florida, where I am now. I work with a large team of undergraduate researchers as well as other faculty and Extension practitioners, allowing me to conduct research that is firmly grounded in real-world applications.

These real-world applications help me make sure my work can extend further beyond the dusty corners of traditional academia.

I also work to improve the university and community, particularly starting to work lately on disability-related committees. As my own boss, I can typically set my own hours and take sick leave when I need to.

I am by no means settled. I have to raise my own money through grants, which I’ve managed to do successfully so far, though the threat of losing my job and, by extension, my health insurance continue to weigh heavily especially as the government contemplates provisions for pre-existing conditions and lifetime contribution limits. My medication is about $120,000 per year (that’s what’s billed to the insurer), so with a lifetime limit of $1,000,000 of coverage, I’d be nearing that now, seven years after starting the job. But I have been able to advance my career enough that I think (and hope) I could manage to get another job or even another career if I need to for the health insurance benefits. Sometimes, I even think about changing careers anyway because I do enjoy trying new things, and I know I could do valuable work in other places. However, I’m not ready to give up on research just yet.

A Final (but likely not my last) Obstacle: Coping with COVID-19

The final obstacle I’m facing is one we all are grappling with today – COVID-19. Since my disease is so sensitive to stress, the additional uncertainty of the pandemic could be exacerbating my symptoms. On the other hand, the uncertainty of my disease day-to-day has helped me reckon with the uncertainty of the pandemic. I am immunocompromised, so I have to be more careful than most people. The realities of university budgets and the potential for big cuts in the next year or more are also frightening, but I’ve learned to make some backup career plans when I have the energy and let go of day-to-day worrying about how long I’ll be able to do my current work.

I’ve found a combination of exercise – I love rowing crew and lifting weights, with some hiking, yoga, and other outdoor activities thrown in – and mental health care, from conventional therapy to apps that help me get through my everyday routines and drink enough water. I am coming to terms with, nearly 18 years after my diagnosis, the label of disabled, helped in part by finding a strong community online. It’s not an organized group, per se, but I have learned a lot by following disabled activitsts on Twitter and podcasts, including the Disability Visibility podcast, and its founder @SFdirewolf, @Imani_Barbarin, and @DisabledStem.

Currently, my setup is working for me. But if it doesn’t, I’ll look again when the time comes, and hopefully will look back in the end and see that even though I didn’t know where I was going to end up, I really enjoyed the ride to get there.

References:

[1] Leduc, A. (2020, September 16). Life is Too Short for Someone Else’s Shame. Disability Visibility Project. https://disabilityvisibilityproject.com/2020/09/16/life-is-too-short-for-someone-elses-shame/.

[2] Stofer, K. A. (2015). Informal, non(-)formal, or free-choice education and learning? Toward a Common Terminology for Agriscience and Ag-STEM Educators. Journal of Human Sciences and Extension, 3(1), 125–134. https://www.jhseonline.com/article/download/598/525/.