In Which I Am Unfair: Vignettes in Campus Ableism

“Oh, he’s at the hospital again,” one of the women in the little gaggle of people walking past my table announced. “Again?” another of the business-wear group commented. Some of them had changed out of their dress shoes to beat-up sneakers. A lunch group or something like it, off for an hour’s break. One of the guys laughed. “He’d better come back with like a broken leg or something this time!” The rest of the group laughed too. “Something big.” “Yes, it doesn’t count unless it’s a full cast!”

I was on the top floor of the building housing a variety of student support services and academic judiciary offices.The little group was joking, in the rather mean-spirited way of much younger and less professional people… say, elementary school students. They just happened to do it in front of a student with invisible disabilities. Nice to know that their colleague’s misfortune was thought of so compassionately, and that their understanding of real injury and illness was restricted to the immediately visible.

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“She’s always taking medications. Obviously, too, like taking a lot of pills at committee lunches or the department party. Something’s wrong. I mean, a lot of women take a pill every day and all, and that’s fine, but this is a bunch.”

This conversation happened with a colleague, who tried to backtrack when I (couldn’t help it, mate!) pointed out I took a lot of medications as well. Too bad it ended up with him even deeper in it than when he started, of course … his bumbling efforts were more humorous than hurtful, especially as there were a few other women who cheerfully joined in and helped him dig himself deeper every third word.

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“I know your dietary restrictions – they are very familiar to me too, because I have some – so I’m sure you can find something to eat here because I can.”

Another very kind effort from a very kind person who still couldn’t wrap her mind around the fact that two people with disabilities might have very VERY different disabilities and paths through life. Instead, everything had to be viewed through the lens of her illness. She never really did get that graduate students  are not usually protected by the FMLA or that mast cell diseases are much different than avoiding spicy food after 3 pm.

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“Oh, so you mean there’s really something actually mechanically wrong? Oh!”

A college administrator who suddenly seemed to understand and be much happier to grant my request for help restructuring my classrooms. I couldn’t help it – I rolled my eyes. Fortunately for me, he was facing the other way. I do so love it when other types of disabilities are judged as less “real” than physical ones, or when it has to be some type of injury that the administrator relates to (like dislocating joints, for example, or sprains) to count. I’d already explained POTS and MCAS by that point, but those apparently didn’t count as “mechanically” wrong. It wasn’t until I remembered and explained JHS-EDS 3 that everything seemed to suddenly click. I probably need to work on my communication, but sometimes I just really don’t want to … 

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I and another student are seated, slumped and exhausted, on those orange carpet-covered chairs common to 75% of student waiting areas. We’re tutors, nearing the last shift of the day, waiting for our respective students. They’re so late it’s looking like we are not going to be tutoring after all (read: not getting paid after all, either). I’m feeling a bit down about this. The other tutor wonders why I’m upset about having free (unpaid) time, and I explain I missed my bus and had to pay for a Lyft into school so I could work that evening. I at least wanted to recoup my losses.

Tutor 1: “Oh, where do you live?”

I told the other tutor

Tutor 1: “Oh, that’s so close! It’s not far from campus at all. You could have walked that!”

I was tired. I didn’t really want to go into explanations. “No, I can’t. Definitely not in time to get here for work.”

Tutor 1: “I don’t understand. It must take as long to drive as walk. But I guess your legs are shorter than mine!”

Really, really didn’t want to go into it … but I wasn’t much shorter than her, and the way she was now staring at my legs meant she’d figure that out soon. I didn’t want to be categorized as being lazy, either, so … “No, it’s not that. I just really can’t walk it at all, honestly.”

Tutor 1: “I don’t get it.”

I gave up completely. “I know I don’t look it, but I’m actually very sick. I cannot walk from my apartment to the campus in time for work. It’s not contagious, so you won’t catch it, don’t worry.”

Tutor 1: “Oh! I never would have guessed, because you look fine!”

A classic response. At least I already have a selection of answers pre-drilled, and wonder of wonders, here came a student. “Um, yes, I know I often look ok, thanks very much.”

“But you always seem to manage …

Thankfully my student had arrived and I was rescued before I had to explain that my ability to tutor was not proof that I wasn’t sick.

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Ableism means discrimination in favor of able-bodied people. It isn’t a word I particularly like, because everyone’s definition of “discrimination” tends to vary just that little bit, and it’s so very easy to accuse someone of it. It can range from systemic abuse (such as a corporation not following ADA law) to casual comments about how inspirational disabled people doing ordinary things are. (In my case, I’m actually just fine with being told that I’m inspirational or heroic, because most of the time my mind is screaming at me that I’m a failure. If there are ever other voices chiming out a different message, I’m usually far too grateful to be offended.)

I’m being unfair here, because not only are all of the above based on real things that happened to me this semester, most of the people involved had no idea what could have even been construed as wrong about their behavior. Despite the bit of me that feels like a small tattling child, this is part of the reason I decided to write this post – because some of them will not realize what they did was quite wrong. In this light, in this form, it’s easier to see that endlessly interrogating someone and then using her ability to complete her work and look physically put-together as a marker for disability is wrong. Judging someone on taking the medications they need to survive is wrong (or having the number allowed be related to their sex!). No one in in a professional setting especially should joke freely about a colleague’s physical status – even if that colleague might have ordinarily joined in on the joke.

In the end, the best path forward is probably one I struggle with myself continually.  Wait, and then in the depths of the smallest square of privacy you can find, think about your latest sly witticism. If you wouldn’t want it said about yourself, then don’t tell the joke out loud to Mr. Oral B.

 

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8. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

Some problems are the same that every student with disabilities faces when trying to study: I wish they knew how hard it was to get to class on time when I have to wait for elevators or take a different path. I wish they knew that flickering class lights can give me migraines. I wish they knew that it’s not that I’m uninterested, it’s just that my body language conveying my interest is going to look different from everyone else’s. I wish they knew that it they don’t have a lot of choice about whether to actually do agreed-upon accommodations or not — if there’s paperwork and it’s been deemed reasonable, that’s that. I wish they knew that outside class activities are going to take me twice as much work, or might even be impossible. I wish they knew that I can’t eat food when it’s brought in to class, for whatever reason. I wish they knew that being in their office when they’ve just smoked or put on perfume can trigger an allergy attack. I wish they knew when they decide to take the class somewhere else besides the classroom — be that a walking field trip, class on the lawn, or a stroll to the local pub for seminar — I know I’m either going to cry at the agony that puts me in or bawl from the shame of speaking up and asking for a ride, another route, or a different place.

… Everyone else wants to hold class in the pub. Why can’t I just go along? Why can’t I be normal? Why do I have to cause trouble, be special, make more work?

I wish they knew how badly I want to be normal and simply go enjoy seminar in the pub with everyone else.

7. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish some of my professors would realize how horrifically expensive it is to be a chronically ill and a graduate student. I can see it on their faces as I try to fit in a few more hours of work or pass on attending conferences. “But there’s grants that cover some of it,” a few might protest, or “shouldn’t you be writing your dissertation instead of working?” The kinder ones also mention things like “knowing you have to eat” and “student budget.”

I spend literally thousands of dollars each year in medical care. Even once I’ve paid for my insurance and met the deductible, many things that I need to function — including medical devices —  aren’t covered by my student insurance. Then there are the countless other things that add up: Lyfte or Uber, on days when I can’t drive and public transit falls through; crucial supplements; more expensive food as I become intolerant to basic cheap staples like ramen or peanut butter; even delivery costs for things when I can’t find a way to get to a store or a distant compounding pharmacy. It’s not that I’m not managing my money, or that I’m not trying to save, or any of the other common financial tips. (Saving for a rainy day when you are constantly, chronically ill … it’s not a “rainy day,” it’s a monsoon that will last the rest of your life.)  ‘

It is just very expensive to be sick.

6. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish my professors would realize how surreal school sometimes seems to me.

At first, you see, it was hospitals and doctor’s offices that felt surreal. My future life as I imagined it could and did crumple and blow away like dust and ash in rooms with cheerful accent walls, posters of kittens and skeletal systems, and crinkly paper robes. Repeatedly. It was surreal.

Then I spent a lot of time in hospitals, listening to the banter of the night nurses and the jokes of the janitors. Those places became, if not comfortable, at least familiar. School felt surreal then, with its very artificial deadlines and rules. In the ER the deadline for the man who had been hit by a car was real, the rules for resuscitating a patient in cardiovascular collapse because of anaphylaxis were real. School was an absurdity, ridiculous in the amount of effort and stress being expending over 7 pages in Times New Roman that would only ever be read once.

Sometimes it all feels surreal, especially when I jump in between a world where almost everything is life and death to a world where everything is made-up and meant to teach safely. There isn’t a lot of room in my life between those two poles for normal living. I worldjump instead, losing a bit more of myself with each trip until I feel like a ghost, out of place in both planes.

Oddly, the place where there is life and death around every curtain is also the place where dark humor reigns, but the place where there are tests and quizzes behind every classroom door is sometimes taken oh so very seriously. There’s not anything to be done about this — it’s up to me to manage the worldjump. I just wish that my professors knew.

 

5. Things I Wish My Professors Knew About Being A Chronically-Ill Graduate Student

I wish they understood how and why graduate life can be isolating for someone who is chronically ill.

Professors might reminisce about the good ol’ days studying together over drinks, scraping together papers last minute, and doing rambunctious and borderline insane physical stunts. That’s great. But it’s not going to be my life. I can’t rock climb, I can’t go out drinking with my fellow students, and I can’t even be designated driver anymore. I can’t stay up late partying, or even just stay up late most of the time. Even if my mind wants to party the night away, my body needs a heating pad, ginger ale, meds, and sleep.

I’m seen as insular, not engaging with graduate life, non-participatory, etc., and by more than my cohort (most of whom actually understand). Professors have pulled me aside to ask about why I’m not hanging out with the rest of the graduate students. I have gotten kindly meant tips about everything from battling depression (because I’m pulling away from people) to ways introverts can have fun at parties. The social side of professional academic life is important, and professors are watching to see that we’re developing those skills and representing the department well. If I’m not at the 9 pm-12 am conference reception, I’m seen as failing that unspoken test of graduate school life. Furthermore, as a graduate student in the fine arts, there are often alluring late nights of concerts, talks, dinners, operas, showings, and presentations. But I really have to pick and choose which ones I even try to attend, and I can’t do them all. The physical cost is just too high. I still have to teach at 9 am the next morning.

In this age, there are other ways to make contact with people. There are ways to fundraise, to network, and to present research that don’t require robust good health. The field needs to recognize that these options are legitimate and begin to make accommodations a matter of course. Professors need to realize that not all routes through graduate school are going to resemble their own — but until then, I’ll probably still be stopped and interrogated every couple of weeks about my life choices.

I wish they’d realize I’m not deliberately a hermit — I’m just sick.

4. Things I Wish My Professors Knew About Being A Chronically Ill Graduate Student

I wish my professors would realize that if I’m quiet, curled into a ball, and white, it might not be because I’m emotionally upset. Even if there are tears in my eyes and my face is screwed up! More likely I’m just trying to get through class without screaming in pain, throwing up, or passing out — and possibly all three at once.

I’m not a drama queen that has a bad breakup every week.

I’m just chronically sick.

3. Things I Wish My Professors Knew About Being A Chronically-Ill Graduate Student

I wish my professors would realize that my life as a chronically-ill student outside of college is a lot of doctor’s appointments, PT, clinics, testing, procedures, trips to the hospital, and other usually painful and terrifying things. A lot of these appointments were booked months before staff meetings were scheduled. On the flip side, I’m sometimes called into a cancellation or an emergency appointment quite abruptly. Either way, it can play merry hell with scheduling.

I honestly never intend to ride rough-shod over anyone’s carefully planned day. We all have lives, after all. But if I say “I can’t make it that day, I have an appointment,” it means I can’t make it. I shouldn’t have to defend myself further by telling what kind of appointment it is, and I certainly should not be required to go into detail and defend the necessity of medical treatment. I should not have to refuse to reschedule a cardiology appointment to attend a 15 minute staff meeting about the answer key for a quiz.

I am also not going to feel — or be made to feel — guilty about the decision to prioritize my health. My lack of guilt can be interpreted as defiance. I’ll admit it, sometimes there is a touch of defiance in there — I hate having someone attempt to guilt me into feeling or acting a particular way, and so I find myself automatically bristling and pulling out my best teenager “oh YEAH?” complete with eye roll … at least in my mind. 🙂

But usually, my attitude is much more the result of a certain emotional numbness than defiance. After all those appointments and procedures, I don’t have a lot of emotion left to either bravely defy or convincingly grovel.

I know that as a student with disabilities I may unfortunately have more absences to deal with medical emergencies than able-bodied students. If I could change that, I would. I wish that my professors would realize that I would far rather be sitting in the staff meeting, planning out the answer key, than sitting in an exam room being given another life-altering diagnosis.

 

2. Things I Wish My Professors Knew About Being A Chronically-Ill Graduate Student

Graduate assistants often function as the dog’s bodies of a department. We fetch, carry, grade, make emergency extra copies, and cover shifts and lectures. If something needs to be put on reserve or the guest speaker for the conference needs a ride to the airport, that’s a job for the graduate assistant pool. We’re expected to learn the ropes this way. Sometimes it is fairly useless drudgery, chores that just have to happen for the craziness that is an academic department to remain fixed on planet Earth instead of spinning off into the aether. 🙂 Other times it is genuinely exciting, professionally stimulating, and career molding … but to be honest, there’s usually a lot more of setting up tables and proctoring makeup exams. My department even established a 3 hour service requirement (in addition to any other teaching/assistant tasks we have) and a graduate pool. Any professor can submit a request, and then we of the pool are all duly reminded of our required hours and offered this great opportunity to fulfill them by simply…

As a graduate student with chronic illnesses, I have a hard time jumping whenever a professor demands it. Actually, I can’t really jump at all! I can’t carry heavy loads, I can’t run places, and I can’t help move heavy pieces of furniture around to set up for events or class. I have to take medications on a set schedule frequently, so rearranging my day on the fly to substitute teach class or cover a shift is also complicated. To “run and make a quick copy” involves no running, for starters. It does mean mentally mapping out a building to find a safe route to the copy machine and then taking this often more time-consuming path. It means waiting for elevators and struggling with doors. Then finally, it means waging the battle everyone faces: beating the always-finicky department copy machine, large enough to swallow a small GA, into submission 🙂

In my building, “quick copy” suddenly turns into 20 minutes. No one is very happy about that.

So I wish that professors and the administrators of graduate programs realize that not everyone is going to be able to do the typical graduate student tasks. I wish they realize that the reason they are not getting notifications from offices of disability services about this is NOT because they don’t have graduate students with disabilities. It is because there is no mechanism in place to address this situation. Graduate student chores are not a defined job activity. They’re not directly associated with classwork. Until there is a conflict, the ombuds office is of limited use. It is a gray area, and the only way for me as a student to deal with this dilemma has been to notify each and every person individually. Most of those professors have no idea how to proceed in a situation like this, and there can be a lot of varied responses of differing degrees of appropriateness. It means a lot of confusion and missed opportunities. It takes a lot of time.

I think it’s possible for departments to use their graduate students with disabilities in ways that will still be beneficial to the department and not damaging to the student. It will require more thought. It will require more planning. It will require a lot more tact.

It can be done.

One Thing I Learned

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I was innocently reading a web page and abruptly ran into a challenge: What have you learned from being chronically ill? What has changed for the better? The challenge was given with the protestation that this wasn’t about being all Pollyanna about the miseries of being chronically ill, but when they looked back on their journeys, there had been positives.

I know there have been in positives in my life due to chronic pain and illness, and one of the changes I’m embarrassed to admit. Most who follow my blog might, by now, have picked up that I like nature. Maybe, perhaps, I’m a wee bit nuts about it! I enjoy taking pictures of colorful but still very buggy bugs routinely. I was raised to enjoy the outdoors and when my dad handed me a Nikon film camera when I was a tween and started to explain the magic of photography, I was hooked. But when I first moved over 2000 miles from my tiny coastal village to a large landlocked city, I had a pretty horrendous attidude about their version of the “outdoors.”

It was a city. It had parks. With smooth asphalt paths and a few carefully marked, well-traveled, wide “nature trails”—code for something that often had little educational signs periodically and maybe even pooper bag dispensers. The trails were all easy, and almost everyone on them believed that they were really experiencing nature or “hiking.” I did one park’s trails 3 times before lunch one day and then gave up, disgusted. I went through three different sporting goods stores before I found one that had hiking boots. The stores did have ATVs though, to make it easier to pack out after a successful hunting trip—or perhaps to pack in an adequate amount of beer for the trip. There was some good hiking several hours’ drive away, but I had been used to literally walking 10 minutes from my house and finding my way around a preserve on trails that no one had ever bothered to label. Even in my master’s program, everyone escaped into the mountains every chance they got and some also for some chances that probably weren’t really chances but just phosphenes from squinting too hard for a second. Didn’t matter. They were “outdoorsy” and proud of it, and that didn’t just mean ties with pictures of deer on them.

Now, I did think that it was cool that there were accessible trails and playsets and treehouses scattered about, but I’m ashamed to admit that I thought pretty much every trail in the city was accessible. I had a plenty of scorn and very little consideration for anyone who believed differently,

And then I went from having a condition that was supposed to be permanently fixed to having a condition that was less fixed to having multiple surgeries and diagnoses and needing help to make it to the bathroom. My world drew in on itself, and I was so sick I didn’t even notice the suffocating snugness of it until it was practically skin-tight. I couldn’t walk far at first, but eventually I began to stagger around one of those little looped asphalt paths. Those tiny jewel-like parks meant a lot more to me.

A lot of my butterfly photographs are taken at parks like those, a couple hundred acres of playing fields and playsets. Some of them have woods and natural areas—fields left to grow wild, ancient trees with the scars of past disasters still visible in their trunks. With a bit of care and a long-range lens, many of my photographs give the impression that I’m much farther in the wilderness that I actually am.

I learned that not all the trails I had thought were “accessible” were really accessible at all. I learned that there were many different ways to appreciate nature, and not all of them involved putting on a pack and hiking. My world had shrunk to me like a cotton shirt that had accidentally been washed on the hot cycle—now, with the help of friends and parks and ramps and door paddles and elevators, it began to slowly stretch out again. I appreciated the kindness of the people who graded the difficulty of the trails and made some short loops—bugger my old self, so proud at being able to do them all in a morning! My old self was an ass. The one place where there should be plenty of room for everyone—our parks—I was perhaps the most judgemental about sharing in any meaningful way with people less fortunate than I.  There was room at those parks both for people wanting to take a nature walk and for people like me to lap them. The only place that hadn’t had room was my mind.

I’m still learning. I hope not to stop learning any time soon, either. I hope I’m not so arrogant now as to think that I’ve mastered the art of empathizing with others, or that I’ve suddenly solved the problems of accessibility in public nature preserves. I also still find myself thinking that many people in the city need to redefine what they think of as “wilderness” and “hike” yet, too. I’m not quite so far from my old self as I’d like to be! But neither, thanks to chronic illness, am I the same smarmy, scornful girl of five years ago who mocked trails that were less than a mile and had handrails. For that, I am grateful.

Back to School

I was of two minds going back to school. The first was like Peter Pan and his shadow.

“If he thought at all, but I don’t believe he ever thought, it was that he and his shadow, when brought near each other, would join like drops of water, and when they did not he was appalled.”

I would slip back into the rhythm of school, with its percussion section of tests and deadlines rattling away, and the music of learning would enchant me as it always did. My department would once again feel like home – a sort of chaotic, dysfunctional home at times perhaps, but home nevertheless. Oh, there might be a few changes, but once I was back into the swing of teaching and studying and tutoring, I would be back.

I tried not to let the other bit of my mind have too much air time, because it wasn’t particularly concerned with “thinking” either. Instead that bit of my brain tried to shake and worry the details of my return like a puppy with a rag – should I tell my students? What about my bosses? How was I going to manage to lecture when I couldn’t always stand? How was I going to keep medications close by and manage to take them at the right time when I was running back and forth to jobs and class and meetings? When would I get a chance to rest? Would there be someplace private at school I could rest, if I had to?

Still, most of those thoughts, such as they were, were about details. Minutiae. I’d get it figured out in the first few weeks, I told myself. There was no reason to think that I and school wouldn’t eventually join up like two drops of water.

Instead, I sank like a stone. It wasn’t two drops of water, seamlessly blending together. It was like being underwater and staring at pool toys on the surface, all bright colors and cheerfulness bobbing away out of arm’s reach. The other students all have lives, problems, and dreams, the same as I do, but college convention dictates you discuss the trivial.

“Why didn’t they give me a fork with the salad?” “I don’t think the professor will like my title.” “I have to prepare for a meeting with my advisor! I’m so nervous!” “It’s such a long walk over to the big library, so maybe I’ll order the book and have it delivered…”

It wasn’t that I didn’t care about those people, and by extension (some of) their problems. Especially since I knew a couple of my fellow students well enough to know that actually there were other bigger, much more terrible things going on in their lives, too. But at school that wasn’t part of the picture, and everything became just so terribly remote. I floated in the darkness below the flotsam of normal life. Sometimes it was peaceful, realizing that I didn’t really care that much anymore what a professor thought of my paper title, or if my notes were perfectly in order before a meeting. Other times I felt like I was drowning, trapped below the surface and riding much colder currents of terror and pain while the top at least looked comparatively placid. While the others wondered about forks for their lunch, I wondered if I’d go into anaphylaxis as my skin began to burn and my throat itch. They thought about the inconvenience of a long walk to the library, and I thought about joint hypermobility and if I’d be able to walk at all. I felt fresh out of trivial.

The adrenaline-fueled race to grab knowledge, keeping so busy that I danced on the edge of losing it – well, that joy feels a bit more fleeting and muted. The joy of being able to keep breathing or to eat without being sick feels much more immediate in comparison. When it’s not my body that’s pulling me apart, it’s my mind. The research I was doing before would enrich human lives, reclaim a lost part of history, and help explain how a part of society functioned. The medical research I do now, wading through dozens of scholarly articles while simultaneously playing catch-up from an education designed to prepare me for the performing arts instead of science, might save my life tomorrow, or someone else’s in a week. They’re both exciting in their own way, and I love both. And right now, my body still doesn’t have the capability to allow me to thoroughly dive into either.

I know because I tried to do both, sort of … to be the old graduate student me. I told myself that if I wanted to slip back into this world, I just needed to do what I did before. Fake it until you make it, right? I faked it for a week. I didn’t know that old habits would be so destructive, though, perhaps because they weren’t before. I went into anaphylaxis, fought off a cold, got physically ill, locked myself out of my apartment and my car, and slept for 12 hours straight when I made it to the weekend. I still missed 3 deadlines although they weren’t critical. Clearly I still have much to learn at college … and it looks like one of the biggest lessons of the term is going to be how to listen to my body but still keep my mind alive and my program’s requirements met.