chronically ch(ill) – diversity as a spoonie

FUN FACT: you cannot be inclusive if you’re ignoring the invisible

I think about inclusivity often, but maybe not in the way that people would assume. Visually, I appear to be a completely healthy, happy, active person with a lot of privileges, but I have a secret struggle that I will touch on in a bit- I’m a spoonie. Haven’t heard of it? Don’t worry, we’ll get to that- but first, let’s cover the basics of the inclusivity discussion.

Diversity and Inclusion is important to me for many reasons- as an empath, I tend to feel what others are feeling, so a passion for social justice was inevitable. As a woman, I am passionate about advocating for my rights and equality in the workplace. As an individual in an interracial relationship, I have had conversations about how my children will have a different life growing up than I did, simply because of the fact that they will be biracial.  As future professors, we need to address topics related to diversity head on with compassion and the ability to step back and listen to those with different experiences. How do we address white privilege? How can we be inclusive to nontraditional students? How can we better include international students? Students from different socioeconomic backgrounds? Students who are non-binary? We have spoken before about intersectionality before, but while race, gender, and sexuality seem to be at the forefront of this discussion, I think inclusivity ranges far beyond these topics.

Let me ask you a question:
How often do you think about being able bodied?

“The Spoon Theory” was created by a woman named Christine Miserandino in an attempt to help explain to an able-bodied person what it’s like to live with a chronic illness. Imagine that every day, you wake up with an unlimited amount of spoons. Throughout the day, you use these spoonfuls of energy to do various tasks, and the next day you wake up with the same unlimited amount. People with chronic illness have a limited number of spoons, so they have to decide how they will spend those spoons every day, and what goes on the cutting board. Here is a little graphic to help explain to my visual learners!

I am an individual with an invisible chronic illness. I have a form of dysautonomia, an autonomic nervous system disorder that causes my heart rate to skyrocket and my blood pressure to plummet in response to triggers. These triggers range from severe pain, to stress, to simply standing up too fast- my heart starts pounding and my face turns white and WOOPS I am unconscious on the floor, sometimes with some very unattractive muscle contractions. I deal with severe migraines, chronic fatigue, disordered sleep, joint pain, gastrointestinal problems, brain fog, anxiety, and temporomandibular joint dysfunction all on a daily basis.  Basically, the more stressed I get, the sicker I become, and nobody can tell.My cabinet at home looks like a pharmacy. Living with an invisible illness brings with it its own set of issues (if you’re interested, NPR did a great write up about this).

In the classroom, I have to navigate lectures while dealing with fatigue and having to elevate my legs to keep conscious. If you just looked at me, you’d never know that I am not completely able bodied, which has led to professors thinking I’m just lazy or being difficult. Dysautonomia International even has a guide on classroom accommodations for individuals with this disorder. However, when I’ve told professors in the past, I am often met with skepticism, concern, and even exasperation. This past week, in fact, I had a professor tell me that having me in class on a really bad pain day is distracting, because “sometimes you put your head down on the desk because of the pain”. Also, sometimes chronic illness can ebb and flow, with some weeks much better than others. Then, you deal with the “so you’re all better now?” comments. Accommodating me, it seems, is more of a headache than the chronic migraines that keep me in bed for two days with a bag of frozen veggies on my head!

my constant dilemma

In considering inclusive pedagogy, I think we need to start inviting individuals with chronic illness and invisible illness into the conversation. Being inclusive means being accommodating, and understanding, and not dismissive toward people who are facing a private struggle. Just because you can’t see the pain and discomfort I am in, does not mean that it’s not there and making my educational journey more difficult. Let’s start having these uncomfortable conversations about racism, sexism, and ablism. It is only through open, honest communication that we can learn from one another and develop a more intersectional, diverse classroom where everyone has the same access.