By Ella Ware
Getting to class and navigating a school day isn’t simple or convenient for me.
I have a severe form of Ehlers-Danlos Syndrome that affects my entire body- my joints, my autonomic nervous system, my GI tract, my immune system, my mast cells (the pesky things that release too much histamine for me and cause allergic reactions), my bladder, my skin, and my mental health – among other things. EDS is a genetic connective tissue disorder that affects the collagen and causes frequent, painful dislocations and other systemic issues. I use a wheelchair part-time because my hips dislocate often when I walk – and also because when I’m standing, my heart rate skyrockets, while my blood pressure plummets (a common co-morbid condition called Dysautonomia/POTS). I do walk short distances, but it’s always painful for me with every step, and I’m always risking fainting from the Dysautonomia and the vertigo that comes with it. If I didn’t have a mobility aid on my harder days, college wouldn’t be possible for me at all.
When I was 18 years old, after five years of dealing with paralysis of my stomach and colon (also related to EDS), my surgeon made an urgent decision that changed the trajectory of my entire life forever – I was given an ileostomy. An ostomy is a surgically created opening that lets your colon or small intestine sit outside of the abdomen. They’re used to circumvent a dysfunctional GI tract and collect waste. Mine specifically is an ileostomy, meaning my ileum is outside of my body and I wear a bag at all times. It was necessary to bypass my paralyzed colon, and I eventually had my colon removed entirely. It’s been almost six years. I’ve learned that it’s permanent and I see the world in terms of bathrooms. I’m always thinking about where they are and how quickly I can access one if something were to go wrong with my bag in public. When I’m in class, I have to admit I can’t be 100 percent focused – a small portion of my brain power is always dedicated to how I’ll get into the bathroom if my bag starts leaking, and if I’ll have room in the handicap accessible stall to do a bag change in privacy without humiliating myself in front of other students.
Unfortunately, I’ve found that there aren’t many bathrooms close to my classes at GRCC that are accommodating for both my wheelchair and the space that I would need if a bag change were necessary. This is something I worry about every time I’m on campus. I wish I had the privilege of only worrying about homework or my next assignment, but I find myself worrying about the bathroom dilemma constantly.
The ileostomy is a fair trade for me – I spent almost five years unable to eat or drink anything because my body just couldn’t tolerate anything in my stomach, so I was fed something called TPN exclusively through a central line in my heart. My stomach motility and absorption are still abysmal and I still get my nutrients through a line in my neck, but now I’m allowed to do something called “pleasure feeding,” which is just a fancy way of saying I eat small amounts of food just for fun. It turns out that I really love food even if it doesn’t digest properly!
When my colon was at its worst, the pain was so severe that I needed a fentanyl patch, but it didn’t stop me from being hungry and thinking about food constantly. I have a memory of being 14 years old and crying in a McDonald’s with my family because I just wanted a french fry. Having to worry about navigating life and school with my ostomy is overwhelming, but the reality is that I wouldn’t be able to get a college education at all if it weren’t for the bag. I wasn’t even able to graduate high school or get my GED until after my total colectomy, and there’s a chance I wouldn’t be around at all had I not gotten it. Of course, I get frustrated and upset that I was dealt this hand, but I’m finding acceptance because of the things my ostomy gave back to me. I cried with joy on Thanksgiving two months out from my surgery when I could eat with my family again. All that to say, I feel strongly that my ostomy is not the problem here – the problem is how hard of a time I have with accessing the bathrooms around campus.
The bathroom on G2 of Raleigh J. Finkelstein Hall does not have a handicap button at all, which makes getting into it difficult. I can’t use the bathroom on the third floor in RFJ Hall at all – the door is too narrow for my chair to get through it without physical manipulation, not to mention there’s a trash can right in the entrance that I have to move myself. Once I finally made it in, which took time and manual effort, I found that there was not a full-sized accessible stall, so I was completely out of luck. With my particular condition, I am able to use my arms and legs to help maneuver me through narrow entrances, move trash cans, and hold doors open. It takes energy and sometimes causes pain and dislocations, but it’s something I find myself having to do constantly. I’m privileged in that way, and not every disabled person is able to do that. I’ve not found many bathrooms on campus that are truly usable for every person. With my ileostomy, I don’t always have time to make it to an accessible bathroom on a different floor of campus.
My class days look different from start to finish. To start my day, I get dropped off by my Lyft driver right in front of Fountain Street Church. There doesn’t seem to be a way to get any closer than that, as everything close by is for pedestrians. It shouldn’t take more than a minute to walk in for most people, but for me it takes over three minutes (at minimum), and it’s all slightly uphill. By the time I’ve made it to the door, I am exhausted, in pain, and my shoulder, which gives me the most problems, is probably dislocated from wheeling up the hill. I pop my shoulder back into place as best as I can and hit the handicap button. If all of this only takes three minutes, that’s a win… I find myself late to my first class of the day often, no matter how early I leave. Sometimes it’s impossible to account for how many rests I’ll need to take, or how many times I’ll have to pop my shoulder back in. This is all on a day when there’s no ice or snow.
Many days in January and February of this year, I relied on other people to push me through snow and ice because the sidewalks weren’t clear. I wouldn’t have been able to get inside if I hadn’t gotten outside help.
When I’m experiencing these things, the last thing on my mind is to complain, and I don’t share my story or my history for any kind of pity. I just need to get to class on time or to the bathroom. I seldom even think twice about it because I’m so accustomed to inaccessibility in my everyday life. I’ve been in a wheelchair part-time for 10 years, and this is nothing new. This is just reality for me – but I’m not alone. I am far from the only disabled person on campus, so I know I’m not the only one who struggles. I want to advocate for accessibility, so that no one on campus has to struggle in silence because they have no other choice.
I cope in ways that make me seem a little strange socially. After everything we went through, my mom and I both developed a dark sense of humor. She had to care for me in ways that were equal parts absurd and mortifying for both of us- we quickly grew tired of crying, and found it much more manageable to laugh. That’s how I’ve been navigating the world ever since, and I know it can be off-putting sometimes. It’s just how I’ve taken some agency and control back. I wasn’t around anyone my age (other than a handful of other sick kids in the children’s hospital) for my entire adolescence and early adulthood. To be honest, my experience at Grand Rapids Community College is probably my first time being around peers in about a decade. It’s still not a “normal” college experience per se.
This semester, I spent a combined total of about three weeks inpatient, sometimes in the ICU, and have had ER visits in between them. My professors were universally excellent and worked with me each time, and Disability Support Services (DSS) helped me arrange the logistics. I wrote essays, took quizzes, and interviewed folks for articles all from my hospital room, and made up my midterm a few weeks later (I had a procedure, got discharged, and took my midterm all in the same day). It’s incredibly rewarding to me to be in school. My peers have been nothing but kind, even when I’ve felt awkward or self-conscious.
The isolation and trauma have changed me fundamentally, and I have doubts that I’ll ever feel the same as I did when I was very young. I was the healthiest I would ever be and didn’t know it, and I didn’t feel so different. I don’t feel as sharp mentally anymore, but I won’t let the growing pains and my own insecurities keep me from doing something that’s so fulfilling for me. I never know if or when I’ll end up in the hospital again, and that level of uncertainty is unnerving. However, my accommodations kept me learning, and I’m hopeful that they’ll continue to do so. I have gripes about the physical accessibility of campus, certainly, but I have endless appreciation for the way my DSS adviser and professors have bent over backwards to keep me in class. I’m not sure what the answer to the accessibility of the bathrooms is, but I hope to create some type of change around campus.
As a disabled person, I don’t want to be considered an “inspiration” just for existing and navigating a world that was not built to accommodate me. I wasn’t given a choice, and I just want to exist like every other student does. I’d prefer it if I could be stressed about having too much homework and wondering how I’m going to pull off finals, not whether my wheelchair is going to fit in the bathrooms.
Read Ella Ware’s story documenting accessibility at GRCC here.
