Why I’ve Become a Champion for Disability Equity in Academia

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By Karianne Kapfer, MS ’24

When I was 13 years old, I woke up one day with a sharp pain in my ankles. Figuring I had just pushed myself too hard at karate—I had been going almost every day, training for my black belt test—I ignored it. Days turned to weeks and to months, but the pain never went away. Instead, it began to spread to my knees, back, and arms, until it was all throughout my body.

I, terrified of needles and doctors, was sent from doctor to doctor, getting test after test done (and often the same test over again, because one doctor would not trust another’s results).

Karianne Kapfer

But I was only given incorrect diagnoses such as “arthritis throughout my whole body” or the infamous “it’s all in your head.”

After many years, I was finally diagnosed with Ehlers-Danlos syndrome type 3 (the hypermobility type; hEDS), postural orthostatic tachycardia syndrome, temporomandibular joint dysfunction, chronic headache with aura, fibromyalgia, and gastroparesis.

 I was given incorrect diagnoses such as 'arthritis throughout my whole body' or the infamous 'it’s all in your head.'

Today, I am happy to report that most of my conditions are very stable, though my hEDS has been known to cause the occasional rib to slide out of place, and I still bruise easier than a peach.

One might assume the worst part of being disabled is the pain so severe that the weight of a T-shirt on your body is unbearable. Or the moment you are painfully surprised that the repetitive motion of brushing your hair relocates your shoulder—and to this day, you still have no idea when you even dislocated it in the first place.

Karianne Kapfer with her parents at her high school graduation
The author with her parents at her high school graduation.

Yet that is far from the worst part; the most difficult aspect is the attitude of others. Like many other disabled students, I have faced significant adversity in the academic environment.

In high school, my peers and the staff called me slurs, said that I would never get into college, that I was stupid, that I did not deserve accommodations, and so much more—just because I had health issues they could not understand.

To no one’s surprise, it took a toll on my confidence, and I became anxious about my intelligence and future. Part of me believed they were right.

 Like many other disabled students, I have faced significant adversity in the academic environment.

Despite these challenges, I took my passion for marine science and ran with it. I went to every doctor’s appointment, took my medications and supplements, and went to PT and aquatherapy—all while studying hard for my classes.

In doing so, I learned how to become a better advocate for myself, to listen to my body, and to ignore the critics. So by the time the college acceptance letters came in, I felt much more confident in myself and graduated high school summa cum laude.

Once I began my undergraduate studies at the New College of Florida, things really started to improve, and they have only continued to get better since I started graduate school.

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Karianne Kapfer holding a microphone in a wooded clearing
 Recording her first bird in the field, an American goldfinch.

My health has mostly stabilized—and while I still encounter ableism, it occurs far less frequently. I am now at a point where I recognize that it stems from other people’s lack of education rather than any flaw on my part.

Due to these life experiences, I have become passionate about diversity, equity, and inclusion, especially in the realms of disability and neurodiversity. So I make it a priority to volunteer and engage in initiatives that support these values and drive positive change.

Since coming to Cornell, I have been grateful for the many opportunities I have had to act on these passions and to embody Ezra’s founding message of “any person, any study”—a message I would have loved to hear back in high school.

My health has mostly stabilized—and while I still encounter ableism, it occurs far less frequently.

My involvement has included serving on the advisory council for the Lab Inclusion for Everyone (LIFE) Project, which aims to make the Cornell Lab of Ornithology more inclusive for neurodivergent and/or disabled individuals.

We have developed a neurodiversity awareness training module for both people leaders and the general University community, helped get the walkway from the bus stop to the visitors’ center paved, and provided feedback on the newly renovated center’s accessibility.

Karianne Kapfer teaching a class of high school students
Teaching high school students in Ithaca.

I have also worked on a variety of outreach activities, created educational materials, and even published in a scientific journal on my experiences, and on the importance of inclusive programs that help make the scientific community a stronger, more diverse, and more just place.

Even just reflecting on the changes in which I have been lucky enough to play a small part is re-inspiring me. I know that advocacy is not a one-time act—and that representation and inclusion are not just values, but are necessary for progress in science and society as a whole.

I know that advocacy is not a one-time act—and that representation and inclusion are not just values, but are necessary for progress in science and society as a whole.

In the future, I hope to use both my personal experiences and my background in science communication, research, and teaching to help others feel seen and supported.

I hope to do this by mentoring students, continuing my outreach, using my expertise to make institutions more accessible, and simply sharing my story.

Karianne Kapfer, MS ’24, is an aquatic bioacoustician who earned her master’s in natural resources and the environment with a concentration in conservation. Now a second-year doctoral student in the same program, she’s the first person in her immediate family to attend graduate school.

(All images provided)

Published November 3, 2025


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