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.


 

 

 

Advertisements

Bees

I don’t normally photograph other bugs besides butterflies. Partly this is because I’m a bit allergic to a lot of other bugs, and the thought of walking around with baseball-size welts does tend to be a bit of a deterrent. But my long-range lens was working beautifully, there wasn’t a butterfly in sight, and these beautiful, busy, pollen-covered bees were buzzing through the goldenrod.

DSC_0048

Also, hello allergies. 🙂 Ai.

DSC_0049

Skippers

DSC_0023

Somehow I ran out of summer. Just like that. The trees are starting to change from deep summer green to the lighter green of early fall, with the first yellows and reds starting to peep through the curtain.

DSC_0034

Thankfully we haven’t had a hard frost yet, so when I grabbed my camera and went for a walk one evening there were still skippers dancing on the flowers. Wonder of wonders, a few even held still long enough for me to snap a few quick photos.

DSC_0016

The conundrum of summer and fall is that the butterflies like it warm, but I have a hard time with heat. When it gets cool enough for me, only the few and the brave are left. Here’s hoping the weather remains at that perfect fall balance for a few more weeks.

DSC_0029

Spicebush Swallowtails

DSC_0107

The spicebush was one of the first butterflies I took a picture of when I started this journey three years ago, and so holds something of a special place in my heart. My  sister, with that clear-eyed insight and hard-edged compassion she’s always had, realized I needed something. (Compassion, you might think, is not hard-edged at all; no, it should be soft and warm. Not so. When properly applied, without pity or condescension, it has the density and force of a cheerfully-thrown brick.)

Never much one for gardening herself, she knew my love of dirt and flowers. She hauled me off to the local stores, where we spent a few giddy hours picking out brightly colored things. By the next evening I had a balcony garden, complete with flower boxes, chairs, fairy lights, and a citronella candle in a fat blue pail.

DSC_0108

We sat out there, eating ice cream, smacking at the mosquitoes who apparently considered citronella “seasoning,” and watching fireflies. We were both college students, but — “think of it as my birthday present to you,” she said, and dumped a check onto a bookcase.

DSC_0079

Although it must have been odd to a butterfly to abruptly happen upon that bit of fanciful color suspended three stories in the air, they quickly adapted and visited my little garden routinely over that long summer. One of those first pictures turned into the front image of my blog. I’ve moved from that place, and the fairy lights are bagged and boxed, awaiting their next destination. But I’ll always associate spicebush swallowtails — always flitting forward even while feeding, their iridescent wings flashing defiantly in the sun (they only resemble a toxic butterfly, but they aren’t poisonous themselves, you see) — with hope and overwhelming kindness.

 

Skipper on Ironweed

 

DSC_0030There’s an inherent risk with bug photography.

The story behind these shots: I hadn’t been completely sure if I would be able to go out and take pictures the day these were taken. Busy day, strong winds, etc. But I brought my camera. What I forgot… bug spray.

I got a few shots of skippers and a blurred picture of a giant yellow swallowtail for the cost of over 60 bug bites. That’s the point when I stopped counting as I sprayed, creamed, and bandaged the worst of them before heading into class.

Oops.

Do bug photography, prepare to get bitten.

DSC_0033

 

First Fall Monarch

DSC_0278

I was at the end of a walk, feeling a little tired and disappointed about not getting very many good pictures for all the weight of the camera I’d lugged along, when suddenly a bright orange shape winged above my head. The first monarch of fall. It landed high on a tree and tested its wings against the wind. Shiny, almost tentative, and with nary a scratch or peck on its scaled wings, it must have been a relatively young butterfly.

DSC_0272

I grabbed a couple of quick shots before my long-range lens – and my arms! – gave out, then headed back with the start of fall’s glorious copper flame dancing over my head.

DSC_0267

Flying Sulphurs

DSC_0219

I rarely catch butterflies in flight. Each beat of delicate gossamer wings somehow shoots them in another direction with the randomness of a toddler on pixie sticks.

Some days, though, if you want to take a picture of a butterfly, you have no choice but to follow the dancing, capricious flight through bramble and briar.

DSC_0225

And then, at the end of a merry and largely fruitless t- but enjoyable – chase that left my boots full of seed pods, the sulphur went back to the neatly paved path. 🙂

A sulphur on sulphur.

Walk in the Woods

A few weeks ago I stole some time from the spiky black-and-white demands of my to-do list, exchanging it for the peaceful greens and golds of some woods near my home.

20170810_191544

I do love these woods.

20170810_190613

My cell phone camera could just barely catch this Northern Pearly Eye butterfly as it rested on the bark. It didn’t stay for long, zooming off in the erratic flight of butterflies everywhere up into the canopy, where it was quickly lost in the fluttering of the leaves. I was thrilled – poor picture quality or no, it was the first time I’ve ever managed to get a Pearly Eye on film.

A wonderful walk.

 

Me, Disability, and Higher Education

DSC_0031

I nearly cried after a meeting. Not tears of pain, or despair, or grief – those usually need little explanation. No. I nearly cried because I met an active researcher, professor, and librarian who was disabled.

Why did this affect me so profoundly? Perhaps it is time for a little bit of background on the state of disability in United States higher education.

10.3% of the U.S. population in their working years is disabled. 13.5% of students ages 3-21 receive accommodations, but only 7.6% of grad students are disabled. Only 42 U.S. schools offer a semblance of a disability studies program. (Stats from US census, NCES, and Syracuse University, courtesy of Niki Schroeder).

If only 7.6% of graduate students are disabled now, the number of tenured professors — some of whom may have finished their studies before the ADA was passed in 1990 — is probably equally slim. Since many with disabilities do not report them and tracking such data can be a violation of employee privacy, no firm data is available. However, the National Science Foundation reported that as of 2008, “out of 269,400 science and engineering doctorate holders with appointments in higher education, from chancellors to teaching assistants, approximately 19,700 (or 7.3 percent) had a disability (http://www.jstor.org/stable/23395468).

For me, the statistics are a little more grim. I attend a large research university. In 2013, the campus enrollment was around 43,000. However, only 10 students had registered with the disability services office for wheelchairs, and only 500 students were registered with the disability services office. That’s 1.16% of the student body (http://www.cincinnati.com/story/news/2013/12/25/fighting-for-more-than-herself/4197415/). As of today, 60-80% of students “do not feel ok reporting their disability on campus” according to the Electronic and Information Technology (EIT) Accessibility Program (https://gallery.mailchimp.com/17adf2dfe1e5d7d355b632521/images/7f39892f-bc21-4777-8551-b5ea7f8a4eab.jpg).

Additionally, I am a graduate student, thus already part of a statistically smaller registered disabled population – and I am at a performing arts conservatory. Now, over the eons of the arts, there have been many examples of successful disabled artists. For instance,  there was Ray Charles, a blind pianist, or Itzhak Perlman, a violinist who was struck by polio in his childhood. Ludwig van Beethoven and Bedrich Smetana composed while deaf. Vincent Van Gogh had epilepsy in the last years of his life and suffered from mental illness. Frida Kahlo painted from her bed.

Still, the world of the arts may not be as inclusive as those few artists above make it seem.  Male conductors still far outnumber female conductors, and its only in the last few decades that some predominantly male orchestras have even allowed female performers to become full members (in 1997, the Vienna orchestra famously finally allowed a female harpist membership). The university marching bands usually don’t have any member with obvious physical disabilities. At the professional level, physically disabled performers are virtually non-existent on Broadway, at the Met, or the American Ballet Company. That is probably why my school, which focuses on preparing students for just those sort of professional careers, does not seem to have any obviously physically disabled students.

But what of invisible illnesses? Of those, graduate students have plenty. There is no data on the number of students with, for instance, fibromyalgia, dysautonomias, chronic fatigue syndrome, etc. But there is some information on mental health and graduate studies, and the picture is bleak. In 2004, a survey of graduate students at the University of California Berkeley discovered that 45% of respondents had experienced an emotional or stress-related problem that had significantly impacted their well-being or academics. 1 in 10 had seriously considered suicide (http://regents.universityofcalifornia.edu/regmeet/sept06/303attach.pdf.). In 2008, a new survey put the number of graduate students who had considered suicide at exactly 50% (http://abcnews.go.com/Health/DepressionNews/50-college-students-felt-suicidal/story?id=5603837). In comparison, only 6.7% of the adult population of the U.S. experiences a major depressive disorder each year, and anxiety disorders affect about 18% of the population (https://www.adaa.org/about-adaa/press-room/facts-statistics). Of course, most of the data on mental health and graduate students comes from a single university – the University of California Berkeley – so perhaps it is just an exceptionally difficult program, and the situation isn’t really that bad – and everyone knows that statistics can be manipulated.

Still.

Graduate students are about 20% more likely than the average US population to experience a mental health issue that affects their health or performance at school. Yet most of the time, this isn’t discussed. In fact, the same 2004 UC Berkeley survey found that nearly 25% of its graduate students weren’t even aware of on-campus mental health services.

I’d love to believe that someway, somehow, my school is simply far healthier than the norm. That’s not exactly a supportive, inclusive wish, but it is better than the alternative – realizing that the low numbers of students registering with disability services or feeling comfortable about admitting their disability is actually more indicative of a culture that hides weakness and disguises illness rather than accepting, supporting, and healing those who are struggling. My hopeful wish withers in the face of the evidence I see every day of every week. It’s the inaccessible grad carrels on the 8th floor of a library. It’s the Starbucks “cure all” drink named after the school that everyone slugs when they’re sick, but can’t stop to heal. It’s students sleeping everywhere, any chance they get, and not just during finals week. It’s classmates coming to seminar doubled over with the flu. It’s seeing bouts of crying and apathy at every corner.

The school, to its great credit, is aware there is a problem. On the campus level, the IT department is trying to ensure electronic universal design and bring the campus up to the 1990 ADA requirements (after a tangle with the Office of Civil Rights). On my own college’s level, there is a physical therapy office in the complex to treat dancers when they inevitably get injured (a more-or-less accepted occupational hazard). There are now mindfulness classes offered, and the counseling office has decided that the conservatory is a good location for an emergency drop-in office. The library is in the process of changing its layout to make all areas more accessible – a massive venture. I do think that the heads of the school are trying to change the culture, and for that, I am both grateful and proud.

On other campuses, the fight continues. At the University of Pittsburgh, complaints have been filed every year since 2010 (http://pittnews.com/article/107584/featured/diversity-includes-disability/). Depressingly, the same article states that Pitt’s numbers are about average. The University of Santa Barbara California has a “Disabled Students Program … conveniently located on the second floor of the Student Resource Building”  – and separated from the elevator bank by a mesh walkway (http://dsp.sa.ucsb.edu/). At the University of Virginia, students are battling to have an adequate number of disabled parking spaces, since the current need far outstrips the minimum standards (http://www.cavalierdaily.com/article/2017/03/accessibility-issues-affect-students-on-grounds).

This is why I was so overwhelmed when I, as a graduate student, met a professor in my field who was disabled, because it felt like there was hope. This is why advocacy is important. This is why awareness is important, because without it, students will continue to struggle on, alone and afraid to get help, and no positive changes will happen in higher education.

#disabilityawarenss #inclusivity #365dayswithdisability