I ’m sobbing. I just helped lead a wonderful “Sit Out” protest. There’s a new set of stairs on campus — without equal ramped access. People with mobility-related disabilities have to go all the way around a large building now for the ADA route. It’s ridiculous. They spent two years demolishing two buildings and moving around a ton of dirt and rock — and then they installed a staircase that only the currently able-bodied can navigate. So we put up a protest, sat out on those steps for an hour on the last day of classes with signs and fanfare. We want the university to get better at planning for all bodies because they haven’t been doing a very good job. We’ve been tweeting the university president.
But I’m sobbing.
The protest was great. So proud of my community. We set the date/time four days before, and then did it. So many people from nearby departments showed up. So many friends were there. At least two dogs attended — which is how one should always gauge the success of an event. My kids led chants. The signs were the right amount of cheeky and angry and direct. My graduate students were there, looking tough and sitting strong.
I’m proud to lead by example; I teach on topics in disability and technology. I’m proud to be disabled and care deeply about disability justice, infrastructure, and inclusion.
But I’m sobbing.
T onight has me thinking about how I got here: my first experiences of being disabled on campus. I was many-long-months-into-chemo tired, five months out from my leg amputation — my leg lost to bone cancer on my femur. I was on double crutches with a prosthesis that felt so incredibly heavy, and my very first graduate student was defending his master’s thesis.
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I’d worked for two years with Keith in an interdisciplinary program. I was just a committee member, but this was a first! He was defending, and I felt so lucky that the committee had scheduled around my chemo schedule so I wouldn’t be at the hospital for this important day.
I drove by myself — which I had only recently started doing since I got off the loopy painkillers — to campus. I parked in the ADA lot nearest to our department’s building.
I had to get from parking to my office, for the first time in a long time, and I had changed a lot. The building I used to walk to every day from a more-distant parking lot without any problem now seemed so much farther away.
It was a hot day. Chemo sent me through menopause really hard, at 31, and it didn’t take much to start a flash. Flashing hard. Every step: tricky, sticky agony. Synchronizing my body took attention: crutch arms and prosthetic leg step together, then my solid meat leg would take its step.
Slow, steady.
Hot, sweaty.
Crutches and prosthetic leg, then flesh gets its turn. Heavy step, simple step. Simple sweat.
Cloudless day, sun beating down. I have my hat on. I want to take off my hat to let my bald head feel a breeze, but my hat must stay on so I don’t get burned. Chemo makes skin sensitive.
Why don’t they have any trees on this path? Noontime sun means there is nowhere to hide and take a real break.
Why aren’t there more benches on campus? I need a place to rest.
I do my best to take a rest, standing, balanced on my crutches. The yellow one-shoulder backpack weighs heavily, making my shirt stick to my skin.
I don’t want to be all gross for this. I want to be the professional I’m supposed to be. I want one normal thing, a master’s defense. Chemo already takes so much away.
But I can’t think about that now. I have to get there.
More sweating and careful, measured stepping.
I stop a few times, standing in the sun. I’m next to Shanks Hall. English lives there. If I could go stand inside for a moment, maybe I could stop sweating, recover a little, and then make it to this defense without looking and feeling so rough.
But the entrance has steps too high to manage on these crutches, under these conditions, and with this mess of a body, so tired.
There’s no reason it should be this hard just to be on campus.
I balance-stand and look at the steps to a building I don’t get to go to. It’s probably cool in there. I have to stop sweating this much. I step a little farther. I stand-rest another dozen times on my way. At some point, my mind shuts off, my body requires my full attention, and I accept that sweating will be never-ending.
I will arrive to this should-be day of triumph and happy success as a wet mess.
But I get to see my colleagues! They are excellent humans. Gary and I talk about hats. I get to sit down; everything is great when you’re sitting because you don’t have to think so hard about your body. I’m going to hot flash through this defense, but OK, whatever.
Keith is great. I am proud. Keith and I walk out of the defense together, down the only ramp from the building, around the back of course. He walks at my pace and stops with me when I need to stop, but we’re talking about his plans and how things are going.
The way back feels less far with a friend. Keith gets me to my car and heads off. I get in. I blast the AC and just sit for a bit.
S o, four years later I’m sobbing on the night of the protest, thinking about how hard it is to be on campus. I’ve been on campus at my best and at my worst. I want to think that I have belonged on campus the entire time.
Hearing from others who have struggled or have had loved ones struggle to remain on campus, to do their jobs has moved me in ways that are hard to consider without weeping. There’s no reason it should be this hard just to be on campus.
The university held a meeting with disability caucus members in June, a month or so after the protest. Nothing dramatic happened. Meetings have been held before about accessibility, but this was the first to include disability representatives, along with facilities staff and university architects. And the university has made progress. With our community’s push, we have a better campus accessibility map, we have an easier online form to report problems (that automatically goes to facilities and the ADA coordinator), and the university has placed handrails on the campus’s most iconic building.
I do think there are people who care.
Yet 27 years after the passage of the Americans With Disabilities Act, larger structural and planning issues still seem to discount access. About the stairs, administrators say that the grade is too steep, and there is not enough space for a ramp. That is true now, after the fact. These things need front-end planning and priority, rather than “oopsy” after millions of dollars are spent. I have no expectation that we will get a ramp in that area. Signage to indicate an accessible route is still missing. What we hope to do is make them consider accessibility earlier.
I return to thinking about my colleagues — who gathered on the steps to protest with me! — and their generosity and support and inclusion in community as I went through the very worst time in my life, and still in less-bad times. They talked to me about non-cancer things while I had cancer. They signed up to bring my family meals — and demanded more dates because they all wanted to feed us.
My community does feed me still. I don’t know why I’m sobbing. Everything is great when we’re sitting.
Ashley Shew is an assistant professor in the department of science and technology in society at Virginia Tech.
