When the campus disability office needs educating about Lyme disease
by Aviva Peltin
Ableism is a term that was not even on my radar before 2010, when my health crashed. I guess that’s how it goes – you don’t realize the obstacles others experience until you’re facing them, too.
Before 2010, if I were to contemplate disability, I would think about someone in a wheelchair or people who are hard of hearing. If I were to think about accommodations disabled people might need, I would think of elevators, handicapped parking spots, and ramps.
Now that I’ve been healing from chronic Lyme disease and mold illness for over six years, I understand how disability can come in many different forms. On a daily basis, I experience chronic fatigue, weakness, and neurological issues. Do I look disabled? No. Am I disabled? Yes, although I have resisted the label. Why? One word: Ableism.
Resisting the disability label
First, a little backstory: Two years after finishing high school, I was finally properly diagnosed with my various health problems and decided to begin working part-time toward my undergraduate degree at the age of 20. I resisted registering with the disability office for 18 months, but finally caved. Still, I didn’t ask for the accommodations I needed right away.
Instead of asking for a parking spot next to my classes to conserve energy, I would park in my assigned lot and walk 15 minutes to class. I didn’t want a disability symbol on my parking permit, even though walking to class took significant energy. I didn’t want others to see the handicapped symbol on my car and judge me, or even worse, doubt my experience. When I finally asked for a parking accommodation, it helped me immensely. I wish I had asked for it sooner.
Despite maintaining a 3.8 GPA, because I am not a full-time student, I have been excluded from the dean’s list. This past year, my mom advocated on my behalf regarding this issue. After a month of emails and phone calls with the university administration, my school finally changed its policy.
Now students who are registered with the disability office are honored on the dean’s list each quarter if they maintain a 3.5 average while taking at least six credits. (However, this policy is still not fair because many disabled students do not feel well enough to take six credits. Nevertheless, it’s a step in the right direction.) Unfortunately, this dean’s list exclusion is common in universities nationwide, and many universities are not even aware how this policy suggests that able-bodied students are more important than disabled ones.
Enlisting the help you need
As my mom advocated on my behalf to change the dean’s list policy, some questioned why I didn’t advocate for the policy change myself. Shouldn’t I, the adult student who was affected, be composing emails and making calls? Shouldn’t I be protesting with signs and passing out flyers?
Those people don’t understand that many disabled people do not have the health to stand up for their rights, or even to speak up at all. When someone expects me to stand up for myself, they clearly do not understand my limited energy and how it can only go toward a few activities each day. With limited energy, going to my blood draws, taking my pills, and making dinner for myself must take priority over energy-draining activism.
Because I am immunocompromised, I cannot spend time in certain moldy, water-damaged buildings on my campus. I have been a part-time student for the past four years and have been able to tolerate most buildings. However, one of the oldest buildings on campus irritates my lungs immediately upon entering. Unfortunately, multiple classes I need to take to graduate are always held in this building.
I had my doctor send the disability office a thorough letter explaining why I needed that class to be relocated due to my body’s reactivity. I received a response saying that I “may or may not” be granted this relocation, and that the disability office would work with the health department of the school to test the building. I was shocked, hurt, and angry.
The disability office implied that my personal experience in the building did not matter. Apparently, my reactivity only counts if the school deems the building dangerous for all.
Society does not teach us that someone can be disabled in different ways, at different times. I am surprised that an office meant to assist disabled students and make their university experiences as accessible as possible, has attempted to make me feel powerless.
Additionally, mainstream society does not understand how someone who looks healthy can be cognitively and/or physically disabled. Someone with Crohn’s disease, diabetes, or lupus, might look healthy, but how he or she feels might not be visible. Many people in my life, time and time again, have discounted my experience. This past Thanksgiving, my great aunt was thrilled to inform me and my parents that I looked healthy. Clearly, she reasoned, if I looked healthy and energetic, I must feel that way, too.
Her comment seemed to suggest that her observations of me should take precedence over my personal experience. Doubting another’s experience is insensitive and harmful. I am re-learning after all these years to trust myself, because when enough people tell me that my own perception of reality is false, I, unfortunately, begin to question it. And, yet, I know my own perception is the truth.
After six years of struggling mightily with my health, I refuse to let ableism take away my power. I will continue to stand up for what I need, and if I don’t feel energetic enough to do so, I will enlist the assistance of others.
My number one piece of advice to students with chronic illness would be: Ask for what you need. Get a closer parking spot or ask for extra test time. Don’t take no for an answer. Ignore the critics and bureaucrats who try to undermine your experience and judge you without understanding. If you can, educate the misinformed. Remind people to check their privilege. Refuse to feel the ableist shame imparted upon you by society. You are strong. You are resilient. Asking for what you need is the most loving and compassionate thing you can do for yourself.
Aviva Peltin is pursuing an undergraduate degree in creative writing in Seattle, WA. This article originally appeared on The Mighty. You can follow her daily musings as she heals from Lyme disease on Instagram.