While uncomfortable, swiveling chairs and iconically slow elevators are a nuisance for some, they can be hidden barriers and sources of anxiety for others. One SIPA student shares how EDS, an invisible disability, affects their life and calls on the Columbia community to expand our understanding of diversity and inclusion.
Do you remember the corny jokes that SIPA administration made during orientation week urging students to take the stairs? Perhaps they didn’t leave much of an impression on you, but they certainly stuck with me. “Don’t be lazy,” they said, chastising today’s youth for an inability to walk the few flights of stairs from the 4th floor to Publique. Everyone laughed and I chuckled too, but deep down, I felt a knot in my stomach and a dormant panic revive.
A year before joining SIPA, I was diagnosed with a fairly rare genetic condition called Ehlers-Danlos Syndrome (EDS), classified as an “invisible”, or hidden, disability. In short, my body doesn’t produce collagen properly which leads to defective connective tissues. These are the tissues which bind almost everything in your body together, including bones and organs, so almost all my body parts are susceptible to weakness. Most commonly, my type of EDS affects the joints and means that without regular care and a careful exercise regimen, many of my joints are at risk of dislocation from the slightest of harm. Last year, I spent two months on a soft diet because my jaw spontaneously started subluxing (a form of dislocation).
"Disabilities, both visible and invisible, are often overlooked in our everyday speech."
Needless to say, I was very nervous about moving to New York and starting graduate school with this condition, which was relatively new in my life, and I was still learning to manage. Shortly before the move, I had introduced myself on an EDS New York Facebook group. As well as warm welcomes, I received many words of caution. “Watch out for the subway stairs” or “prepare yourself for long doctors waiting lists.” There was enough to worry about, and the last thing I needed to add to this list was how people would think of me if I took the elevator instead of the stairs just to avoid some knee and hip pain for the rest of the day.
Disabilities, both visible and invisible, are often overlooked in our everyday speech. At a school like SIPA, we engage in a thriving debate about diversity and inclusion, but the longer I live with a disability, the more I realize how little our community features in the dialogue. I understand the onus is also on me to communicate my challenges with those around me. But, explaining my disability to my closest friends is hard enough, let alone to a near stranger. Once someone thinks of you as “sick”, the change in their attitude is palpable, and I don’t want that label attached to me.
It’s why I chose to write this anonymously.
I’m still figuring out the delicate balance of sharing too much and sharing too little with someone I barely know, but there is a very practical motivation behind needing to do so. I desperately wish we could make more space for this on campus. If someone asks me to carry a heavy object, I often do it just to avoid the awkward conversation. Thankfully, my condition is not severe enough to make this a real problem, but others are not so fortunate. It is frustrating that we make it so difficult to express variations in physical ability. We see differences between genders, ethnic groups, and sexual orientations as simply natural, so why not physical abilities? Those too are genetic and do not warrant the stigma or shame that still plague the conversation around them. In fact, the term “disabled” is increasingly being replaced with “differently abled” for this very reason.
"We see differences between genders, ethnic groups, and sexual orientations as simply natural, so why not physical abilities?"
All of this is just my experience. Invisible conditions vary from mental health illnesses to more debilitating types of EDS, fibromyalgia, hearing impairments, celiac disease, and so on. I cannot even begin to describe the experiences of those living with visible disabilities and those are not my stories to tell. What I do know is that, statistically speaking, in a student body of around 1000 students, it is highly unlikely that I face this struggle alone and yet I’ve been shocked by how challenging it is to find a support group on campus. The university is very accommodating when it comes to my physical needs, such as exam breaks, providing note-taking softwares and communicating my needs with professors, but on an emotional level, I have found no community.
And so, I am writing this piece primarily as a call to congregate. If we are to change the way disabilities are spoken about at SIPA and in our wider communities, I believe we must first communicate and share our experiences amongst ourselves.
This year, I’d like to get on a SIPA elevator and not wonder whether every other passenger is judging me for the number of floors I am travelling. This year, I would like our community to think about disability inclusion in our dialogues. This year, I would like to feel comfortable explaining my physical limitations to my peers, without fretting over whether my explanation is convincing enough.
If you are interested in forming a support group for disability students (invisible or otherwise), or simply talking more about this issue, please email firstname.lastname@example.org
In the meantime, here are some other pieces on the topic of invisible illness that I have found useful: