Hello!

February 9th, 2015. I only remember bits and pieces. A harsh light, being pulled off the floor, my kitchen ceiling, and the sounds of the emergency room. My parents, however, remember every detail. My blood sugar was normal when I collapsed into bed. Flash forward to 2 AM — my mom wakes up to a loud crash. Jumping out of bed and flipping on my light, she sees me seizing on the floor, a huge red mark on my chin. I gain consciousness as we wait for the ambulance but collapse again in the kitchen, hitting my head on my counter. Several hours later, with a cracked jawbone and mild concussion, my doctors force me to face a harsh reality: I was not in control of my Type 1 diabetes.

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I was diagnosed in 2007 at the age of six. Severely underweight and weak due to high blood sugar, I spent two weeks at Children’s Hospital in downtown Philadelphia, learning about diabetes and receiving an army of stuffed animals from my 1st grade class. Soon after being discharged, I returned to daily life. My environment at home was centered around education; my siblings focused on school, so naturally I adopted that same priority and diabetes quickly took a secondary role. For years, every endocrinologist visit included the same lecture: controlling my disease was crucial to my future. And yet, I had made no improvements. By the time 9th grade came, my focus was entirely occupied with extracurriculars and academics. Then came February, and my life came to a sudden stop: 4 seizures in 5 days, and I didn’t miss a minute of school. Even though my health was arguably failing, I was still more determined to maintain my grades than face my disease.

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The environment I had grown up in, both familial and communal, centered the “normal body” or “normate.” In the majority of spaces I was in, I was the only visibly disabled person and I felt pushed to the fray of my community because my body did not function like the normate. I battled fatigue and headaches due to high blood sugar, anxiety from my Obsessive Compulsive Disorder (OCD), and the general annoyance of alarms from my insulin pump. Internalized ableism caused pressure to distance myself from the disability community, yet I was drawn to advocacy. In high school, I revitalized a club called Circle of Friends (CoF) that worked to build bridges between disabled students and nondisabled students. In reflection, I would change many aspects of CoF, yet it was a catalyst to finding my passion for Disability Advocacy. My experience with CoF prepared me to work with Davidson College’s Academic Access and Disability Resources Office. Despite being named leader of their student organization the spring of my first year, I was still disconnecting myself from the disability community and thought of myself as an ally.

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Through the conversations and community fostered through the Davidson Disability Alliance, I began confronting my own positionality within disability. I saw that the definition of disability is fluid, based on both the individual and their environment; I sought out opportunities to learn from other perspectives on disabilities and discovered the wide body of disability literature and analysis. At this time, I began engaging more with the  two primary models of disability. The medical model of disability centers on the idea of “cure,” meaning that disability is a mistake in genetic code that must be “fixed.” The body itself is “defective,” and the individual is disabled because of their body. The social model of disability claims that an individual’s environment forces them to be disabled because there is a general lack of accessibility and disability awareness. I hold a blend of both of these models: my environment is generally inaccessible, yet no level of accommodations will completely soothe the pains associated with Type 1 Diabetes.

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While at Davidson College, I took a class called Disability in Literature and Art with Disability Studies and English Professor Dr. Ann Fox, which exposed me to crip theory and helped me fall in love with disability advocacy. I was in a consistent space that focused on disability. Dr. Fox challenged my preconceived notions and introduced me to the concept of disabled pride. Instead of criticizing my body for diverging from the normate, I began to find value in the resilience of my body and all it does for me. I also became familiar with leaders of the disability advocacy community, reading their work and viewing their pieces of art. Individuals like Carrie Sandahl and Alice Wong have shown me how to have pride in my disability and simultaneously recognize the struggles and pain I experience.

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The definition of disability changes based on my environment. On college campuses in the United States, chronic fatigue and mental illness are often not seen as a disability, perhaps due to societal ableism. Walking down the streets of Birmingham, physical disability is seen as a nuisance for those who are not disabled. I have never traveled outside of the United States except for a three-day trip to Canada when I was eleven. I am extremely interested in how the definition and perception of disability change based on culture and environment. How might the current culture of a location affect the lived realities of disabled bodies? How might visibility play a role in that definition? Particularly during the COVID-19 Pandemic, the disabled community has been labeled as disposable. Immunocompromised people, like myself, are seen as less worthy of life and safety by nondisabled individuals. The physical spaces I feel safe in have dwindled and the toll on my mental health has been far-reaching, to say the least. Disability has become a positive pillar of my life, yet in other’s eyes it is a vulnerability factor.

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I have a Type A personality. I appreciate straight-forward answers and clear pathways. Perhaps that stems from my OCD, but I have been answer- and goal-oriented since preschool. As I navigated high school and college, I was searching for clear answers regarding my positionality in complex systems of cultural processes. Dr. Fox’s class taught me that my positionality, and in particular disability advocacy, is about existing in the tangle, living in the grey rather than the inflexibility of black and white. I am becoming more comfortable existing in the grey and with not finding clear pathways or answers. Each individual’s story is their own, valid and valued, yet also contributes to broader perception. I yearn for greater challenges and greater exposure to the disabled community outside of the United States. In order to holistically advocate for access, I hope to strengthen my skills in cultural adaptation by working with disabled people from varying social backgrounds. My year abroad would allow me to build a deeper understanding of cultural environments and continue my trajectory of challenging my own perceptions of disability in order to better inform my future career as a legal disability advocate.