Me, Disability, and Higher Education

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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 careers in 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

Mystery “butterfly?”

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About a week ago, I went for a stroll down the little nature trail in a local park. This little guy obligingly held still, checking the ground for minerals while I shoved my ridiculous cell phone right up his antenna to get a clear shot.

Well.

A nearly clear shot.

I miss my camera!

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I am having no luck identifying this little bug, though. It was light brown, held itself like a butterfly, flew like a butterfly, seemed to be hunting for minerals like a mud-puddling butterfly… and yet, it doesn’t look quite right for a butterfly. It was out around 2pm in the afternoon. I can’t find it in any guide to the mid-western or eastern U.S. It was small, only about the size of a blue or hairstreak.

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Ah, well. I wandered the forest path, blissfully unaware that my keys were missing. It wasn’t until I arrived at my car, still luxuriating in air golden with heat and humidity, that I discovered the loss. People talk about sound shattering the air, but that air, in the triple digits on the heat index, was impervious to the mere blare of a car alarm. The blanket of muzzy gaseous water just wrapped around the sound and smothered it. Shatter smatter, nothing would break that clingy heat.

It wasn’t as enchanting of a walk the second time round. I was just happy I didn’t get sick or faint. I stopped where I’d photographed the bug. It was gone, but my keys were there. One discovery!

One more to go… if anyone knows what type of wee beastie this is, I’d very much like to know.

butterfly at the park

I have resorted to using my cell phone camera. While there are some things that this works quite well for — grocery shopping lists, quick selfies, that information on the back of a book that I just don’t want to take down — it’s not quite so ideal for butterflies.

This, as best as I can identify, is common wood nymph. Despite the “common” appellation, it’s the first time I’ve seen one in this area. The bright yellow on the wings highlights the eyespots very clearly in the second shot.

It was lovely and, for a butterfly being relentlessly pursued by an annoying two-legged waving a cell phone, a good sport too.  🙂

Camera Woes

I haven’t posted any pictures for quite a while. There’s a good reason for that.

20170811_142826.jpgI broke my first memory card! One of the first ones I ever owned, judging by the low number of gigs it stores. You can’t quite tell from the picture, but the card is bent slightly, the top and bottom have become separated, and the top corner’s plastic is broken.

The good news is I had already pulled the pictures off.

The bad news is the card at least partially broke inside my reader, and the reader, despite my best efforts, remains stubbornly jammed. Something, something small and evil and black plastic, has insinuated itself into the drive and refuses to become dislodged.

Finally, my long-range camera lens is being quite uncooperative. You all know, the heavy ones that stick out like gun barrels and cost as much as the standard pizza delivery car. To be honest, mine isn’t quite that expensive, but it’s valuable to me. Periodically it’s been getting out of alignment, or something that causes it to grind and fail to focus. It doesn’t matter how I beg or plead — or somewhat more productively, carefully clean and work my way gently through the settings — it sometimes works, and sometimes doesn’t. If you don’t want to disturb the wildlife you’re shooting, a long-range lens is vital. I know several photographers who work with different subjects and speak disparagingly of the long lenses, but they’ve never taken pictures of a wasp nest or a badger. I LOVE my zoom. I want it back!!

Too bad there are no camera stores in our area. Sending the lens to Nikon would cost as much as a new one, or very nearly. It doesn’t matter, though, because for a graduate student at the end of summer, it might as well be the cost to go to Pluto for summer vacation. So if anyone out there has had a Nikon lens suddenly grind, freeze, and fail, but only intermittently, let me know what the fix was!

 

 

 

 

Birthday Jubilation

Tomorrow will be my birthday.

I don’t write my birthday down on the calendar anymore. I put other people’s birthdays down on the calendar without hesitation. I even schedule reminders on my phone’s calendar, and it politely counts down the last 7 days until the celebration. Somehow, I can’t do the same with mine.

It’s not because I’m dreading growing another year older. It’s not because I think it will be a depressing day, full of regrets that I’ve lived so many years but have yet to fulfill my 4 year old self’s dream of climbing Mt. Kilimanjaro, or some such goal. It’s not because I think that birthdays are overblown affairs. Actually, I enjoy and celebrate birthdays with a zeal that borders on the absurd.

I don’t put my birthday on any of my calendars because some bit of me is afraid that if I put it down, I’m expecting it to happen. Somehow, it feels like if I do grab my sharpie and just scrawl it down on the blank white square I, who don’t believe in jinxes, will somehow jinx it. If it is another event on my phone then maybe, like any other event, it could get canceled. I don’t want to count on getting another year older, because in the topsy-turvy world of illness that I live in, getting another year older is far from guaranteed. Because I don’t know if my birthday really will happen, I don’t put it down.

Life is not guaranteed. The next day might not happen for any of us. It’s not quite like the sunny commercials with the song “Tomorrow” from Annie playing. I love tomorrow.  It just that, unlike Annie, I don’t always feel “it’s only a day away.” Somehow my friends seem to traipse through their days, knowing that life could end quickly but seemingly only rarely feeling the gut punch of it. But even though I walk the same halls that they do, go to the same library and grocery store, and watch the same television commercials, that’s not my life. You see, I have chronic and largely invisible illnesses.

Most of what I have isn’t the sort of thing that kills you, at least not directly. I have POTS – postural orthostatic tachycardia syndrome. My body doesn’t automatically adjust for the change from lying down to sitting to standing. There’s good days and then there are floor days. Will it kill me? Not directly, not unless I happen to pass out somewhere dangerous.  I also have chronic pain conditions, and while fibromylagia and/or myofascial pain syndrome and neuralgia won’t kill you, they occasionally made me wish for it. Like many chronically ill patients, I’m still waiting and fighting for other diagnoses that might be years in coming — answers to questions about an undifferentiated autoimmune condition and random bouts of anaphylaxis. Both of those have the potential to kill me, either slowly or quickly. Even if we don’t have the diagnosis down yet on paper, it’s serious enough so that my doctors have already started treatment.

My doctors are not good about talking about the emotional impact of these conditions. Once or twice, immediately after I was diagnosed with one condition or another, I was handed sheaves of paper as I blundered out the door. Somewhere on the back of the generic printout would be a similarly generic, bland paragraph about support groups and depression.

No one told me that I would find myself staring at an unmarked day on the calendar and wondering what was wrong with me. Why couldn’t I just mark it off in the cheerful, sunshiny color I used for every other fun event, and move on?

Eventually, I did move on. I just put the pen down, walked off, and began the next thing. I proceeded to live my life, my new and strange life with chronic illness. It is not the Annie living that I do, where everything is only a day away. There’s usually plenty of everything in the current day, and I try to make it be good, too. I don’t use the YOLO philosophy anymore either, which often seems to be the excuse for doing things like having a pizza-eating contest or doing parkour on the third story of a building (I will neither confirm nor deny my past participation in such actions.) Instead I try to live knowing that even if I don’t know if I’ll be alive tomorrow, there’s no way I know right now that I won’t. I want to live life beautifully, honorably, uprightly. I want to live passionately and fully. I want to live so that my legacy is good, not bad.

I still can’t bring myself to mark the day on the calendar. Obviously, though, I know when it is. I recite the date every few days to someone in the medical profession, after all. I’m looking forward to spending the day with friends and family, whether that’s in person or virtually. I just want to live every day like it’s a celebration and appreciation of life, in some small way now.

Tomorrow is a blank day, full of the possibility for everything. Everything. Anything.

Titanium All Around

I’ve moved!!

And now I’m surrounded by a lot more metal than ever before. Even when I lived in a (to me, HUGE) city, I was still somehow out in the suburbs, commuting in each day. Now I’m much closer to the heart of my city – one of those places where all of a sudden public transit is a reality and dinner is a quick stroll up the street. There’s construction and sirens and helicopters and guys talking to their battered shopping carts filled with the flotsam of life on the fringe.

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It’s a shock all right. There were no birds on my non-existent balcony, no rabbits snacking on the carefully planted flowers, no dapple-coated fawns wobbling across the dew-soaked lawn this morning. Yes. I miss the green.

The good news: there IS green about, and it’s not very far. It’s more of a treat than an everyday reality, but to be honest just trying to live in my old place, with its three flights of stairs that insisted on pitching and yawing like the deck of a schooner in high seas, took so much of my energy that I didn’t really have a chance to explore the green around me. This might be much, much better — as soon as I find my missing roasting pan and fix my camera lens.

Time will tell. Strangely, in this new place I’m increasingly reminded of the reasons why I decided on titanium for half of my blog title. Strong, light, and resilient, it can burn where nothing else can throw off light. I hope that, mixed in with my flitting butterfly migrations this summer, I might also absorb a little of my new environment and learn a bit of titanium’s properties as well.

In the meantime, I may yet learn urban photography. One can only hope…  🙂

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Zebra Butterfly – Fan Submission

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This shot was shared with me by a friend (whom I haven’t gotten to see in a long time). She saw the butterfly, thought of me, and then discovered the delights (meaning utter frustration and blinding satisfaction) of insect photography.

I’ve yet to get on on film myself (camera lens is acting up again, sorry folks!). I’m very happy she decided to share this one. There’s not many in our area. 🙂