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

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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The Downside of Positivity

I was on the phone with a dear old friend, telling him about an upcoming move. “And it’s right across from the hospital, which is either terrifically convenient or phenomenally depressing!” I finished, describing my new apartment’s location with as much humor as I could manage.

“Well, that’s a good thing!” he said.

“Why?” I asked. “Which one? That it’s convenient…?” There was something in his tone that made me think I was missing something here.

“I was going to say, because it will inspire you to get better!” he told me.

Ouch.

 

With well-known illnesses — say, a cold — most people do not dole out droll little bits of wisdom concerning positive thinking and inspiration. No one believes that a cold will go away because I simply want it to. Instead, they recommend some OTC medications, rest, and perhaps a good hot whiskey with lemon. It’s only when an illness or condition is not particularly well-understood and is (usually) long term that the troubling statements about positive thinking start. Once you’ve experienced this for a while, you begin to notice some very troubling downsides to positivism.

  1. The continual stress on “being positive” can deny the validity of other feelings, like sadness, anger, or loss.
  2. Pushing positive thinking can lead someone to feel guilt over feeling any other emotions but positive ones.
  3. Positive thinking alone will not cure diseases. But statements like the one my friend made place the burden of regaining health solely on the patient. To get better, I just needed the proper mental state, or the right motivation.
  4. The “positive thinking will cure you” mindset leads to guilt on the part of the patient when positive thinking does not actually lead to health. Since guilt is a negative emotion, this can lead into a downward spiral … must think positive to get healthy – not getting healthy – not positive enough – my fault, guilt is a negative emotion, must instead think positively – still not well, more guilt because the first influx of guilt wasn’t apparently quashed well enough. Guilt on top of guilt.
  5. If a cure is not achieved, then to those pushing positive thinking, you just haven’t thought positively enough. This leads to patient-blaming by those who believe in positive thinking as a cure-all.
  6. A failure to improve could imply that you just need more motivation to truly be positive. This does not always mean creating positive and enjoyable experiences for a patient. My friend thought that living next to a hospital might, through mentally stressing me, inspire me to become get better. Emotionally and physically vulnerable patients can be put in harmful situations quite easily. To this school of thought, a more intense job, a long hike, or abusive emotional manipulation are all just things to motivate you to get better, and are therefore completely justified.
  7. I sometimes feel that positive thinking became a fad so quickly because Western society is losing the ability to deal with negative emotions. We become frustrated when someone is hurting and we can’t do anything about it, and instead of empathizing, we cheat. We tell someone to stay positive. We blame them for their emotions and condition. We run from the wide range of emotions someone who is chronically ill experiences. Embracing positive thinking as a cure for illness doesn’t just hurt the patient — it stifles emotional growth for those around them by giving them an easy out. Blame is usually easier than empathy, sympathy, and compassion.

Being positive is not completely a bad thing. Most of us, when given the choice between being depressed and being content, will wholeheartedly chose contentedness! It is also very possible to be both chronically ill and happy. I am by no means against positive feelings or saying that those with disabilities cannot be happy. No.

Rather I think it might be time to admit that positivism has a negative side too, and applying it as a panacea might very well wound those it is supposed to heal.

 

 

 

Traveling with POTS, VI

Travel buddies are the best.

When I was a teen, I couldn’t wait to take a few solo trips. In college and the first few years of graduate school, I did just that. There was something thrilling about setting off by oneself into the great world and successfully conquering one small bit of it. (Even though in my case it was usually more luck than skill that saw me through my (mis)adventures!).

To be honest, though, the joy of traveling by myself had started to wane just a little bit even before I got sick. Taking pictures was a way to share my experiences with others without having anyone physically present, but it was initially a sort of substitute for real human company. Then I feel in love with photography in earnest, and I also became much more ill. As I really began to struggle, a travel buddy was the ticket to successful travel… not my boarding pass, which I lost once. When you’re lost in brain fog, a travel buddy can help point you towards the right sex bathroom; when you’re too weak to lift a case, a travel buddy can help lug it over (or convince someone else to do the lugging for both of you!). A travel buddy can remind me about medications, shout at rude people, drive a rental car, and make sure no one accidentally puts something I’m allergic to in my water or meal while I’m in the loo. In return, I’m an endless source of bumbling amusement most especially, but I try to have their back as well. And the tab, whenever possible, I’ll admit.

The funny thing is, even with my changing perspective on solo travel, if POTS hadn’t slammed into me I might not have learned to not only tolerate, but to even enjoy someone else’s company on trips. Wrecking ball style, it shattered my illusions about the safety of solo hiking, and brought in instead an appreciation for fellow travelers and their journeys that I had never even considered. Even when I am well enough to go driving around a city and spend a day on the town by myself, I find myself checking over my shoulder not because of danger of being alone, but because more often than not I want to look back and share this experience with someone.

Travel buddies. Hard to find, but worth the investment.

 

 

Traveling with POTS, V

Two words. Checked bags.

Except for medications and whatnot, of course. Which, let’s face it, probably fill your carry-on and/or personal item anyway. Spring for a snazzy carry-on to make the fact that you’re carrying enough medications for an old folk’s home more palatable, and consign the heavy stuff to the tender loving care of the airline.

 

Traveling with POTS, IV

My luggage is also full of compression wear. I packed a lot, and I used almost all of it. I thought about not bringing much… but then I remembered that I probably wouldn’t want to spend time and energy on vacation hand washing hose every night. Thankfully even compression athletic leggings don’t take up much space or weight in luggage.

Even if I don’t need thigh-high squeezers at home, when I’m traveling the stress and additional demands of travel mean that I sometimes really have to just flail about putting the things on and lump it (literally, because on a bad flare day the pressure might bring about a rash). But it’s worth it. The difference in between watching a movie or counting the soggy popcorn kernels on the floor of the theater is a pair of boa-constrictor tight hose in a stylish (*not*) nude.

Traveling with POTS, III

I pack a lot of shorts and pants. Compression hose might look nice with a dress, and I love dresses… but I sit cross-legged everywhere, or even curled up with my knees hugged to my chest. I have too many younger relations who haven’t grown out of their “I see London, I see France!!” stage to do otherwise.

No, I’m not afraid or emotionally stressed. Physically, it seems to help with the blood pressure issues and nausea of my version of POTS. Many websites recommend similar tactics while standing or sitting (“fidget!” a UK site recommended! 🙂 So at restaurants, churches, graduations, stadiums, and theaters, I defy the norms of society. I don’t sit properly with my feet on the floor, or with my ankles crossed. I yoda, and smile. Invert my verbs too, I sometimes do. 🙂