08 September 2014

What Professors Do: Disability

Last week, this incredibly powerful essay crossed my radar: Katie Murphy writes about being a disabled student and having to ask all of her professors for accommodations during the first week of the semester.

It resonated with me in two important ways. One, I hate having to ask for accommodations, as a professional or as a human being.

Excuse me, your cigarette [that you're smoking under that no smoking sign] is triggering my asthma, would you mind putting it out? Usually, those requests get met with hostility from the smoker and silence from everyone else in the vicinity.

As a professor, I don't really get sick days. I'm expected to teach my classes. All of them. And if for some reason I can't make it to class, I'm expected to arrange for coverage.

This is one thing if I know I will be at a conference during a class meeting: I can plan an exercise that the students can do in class under the supervision of another faculty member. But if I get sick, I can't expect a colleague to be able to show up and teach what I was going to teach that day. Mostly because small departments depend upon having faculty in different fields to teach a wide range of courses, and much of the time, there's no one in my department who could just do what I do.

So I've made arrangements, after discussions with my department chair and the head of human resources, to teach on line at times when I can't breathe well enough to stand in front of students while talking for 75 minutes. Or three hours.  Or sit in front of them while managing a class.

These days, I get that sick once or twice a semester. The acute phase is usually over in three or four days, but it then takes three or four weeks to get back to full energy levels.

This means that my syllabus includes information to the effect that because of documented chronic illness, class may have to be moved on line at some point during the semester. And I'm told I have to point this out to my students on the first day of class in case someone should be uncomfortable with it and decide as a result to switch into a different section.

I hate having to do this.

I loathe having to paste this boilerplate into my syllabus every semester; I loathe having to ask my doctor each year for an updated letter confirming medical recommendation for the accommodation; I loathe having to hand it over to my department chair; and I really hate having to talk about it with my students.

In her blog post, Murphy does a truly great job of articulating the emotions that go along with this:
I have to engage in a little mental boxing match with self-doubt: “Do I really even need those accommodations? I could get by without them, right? I did before.” And guilt: “I’m wasting my professor’s time. They’re going to hate me. I’m such an inconvenience.” And shame: “A good student and a stronger person wouldn’t need all this stuff.
... Disabled people grow up learning to hate themselves, to hate their disability, because the world we live in hates disability for no logical reason. And sometimes the best way to fight that kind of illogic is with more illogic.
Self-doubt, guilt, shame, self-loathing. Check, check, check.

Except I fear that my supervisors AND my students are going to hate me, feel inconvenienced, suspect I might be malingering and really don't need these accommodations.

Murphy goes on to make a really excellent case for getting beyond those feelings. If you didn't already click through, go do it now, and read. You might even weep.

The second way that Murphy's essay resonated with me? I felt shame of a completely different kind. Shame that it never occurred to me that even though I know this burden, I have never seen it from a student's point of view. And so in my syllabus I have the standard boiler-plate about accommodations not being possible without documentation, see me in the first week of the semester, blah blah blah.

When I return from sabbatical and teach again, I will be removing that boilerplate, replacing it with something human, encouraging my colleagues to read Murphy's essay, and requesting that as a department we come up with better boilerplate.

And I will go on trying to conquer the self-loathing. That's harder, though.

22 August 2014

I Got Tagged

... by my lovely cousin Amy, to take part in the ALS Ice-Bucket Challenge.

The Challenge has its detractors, some of whom think it's a stunt and others of whom worry that other organizations will see a drop in donations, but by and large I think it's a positive thing.

Nevertheless, I've decided to respond in my own way.  

Later today, I'm going to the pool, and I guess I'll go ahead and dump a bucket of ice water over my head, or let someone else do it.

I've also made a donation to the ALS Assocation.  And to the American Cancer Society, and to the Crohn's & Colitis Foundation of America.

ALS has, I supposed, touched my life; I once had a fitful, fearful, fretful night, after being told I needed to be tested for it, and then an hour or so on a gurney given electrical shocks to make sure all my nerves were working right. They were. Eventually, I was diagnosed with walking pneumonia, and thankfully, a week of antibiotics took care of it.

Cancer and Crohn's Disease have also touched my life. I have several family members who have lived with, or died from, either disease, and typing that sentence opens a hole in my heart. But those are not my stories to tell, so I'll leave it at that.

Finally, I've reached out to the local synagogue to ask about volunteer activities. I'm on sabbatical and this is a good opportunity to spend some time giving back. 

There are other organizations I could volunteer through, but volunteering as a Jew feels important and right at a time when antisemitism is on the rise again in Europe. Here in England, a store recently removed kosher goods (produced in Poland and the UK) from its shelves in response to "anti-Israel" protests: Judaism in general conflated with protests against Israeli actions in Gaza. And at a protest on the market square in Cambridge the other weekend, a man carried a sign reading "Israel = Nazis."

Made me sick.

And so I feel it's important to identify with Jews and Judaism in a public way.

Thank you, Amy, for tagging me, and thank you for getting me to think about these things, and getting me to make a commitment to volunteer work in the year to come.

21 July 2014

Potty Parity: No Joke

A letter to the Connecticut Department of Transportation:

---

The newly designed rest areas on the Merritt Parkway are an improvement on the old ones in several ways. But  every time I stop at one, there's a huge line at the women's restroom (and no line, ever, at the men's.)  Finally, yesterday, while I was waiting in the long line for the women's restroom with my son who had already finished his business, I asked him to go back in and count.

Two stalls, two urinals.

In the women's bathroom? Two stalls, full stop.

This raises several questions.

What were your architects thinking?  Why not provide at least as many options for relief in the women's bathroom as in the men's? Or make several individual, unisex stalls, with sinks outside?  

Why design a series of new facilities that create lengthy wait times for women (and their male family members traveling with them)? Why not create facilities that enable equal wait times, knowing social constructions of restroom activities require more time for women?

(No, it's not simply biological difference.)

How much time is lost by women waiting in these lines, in the aggregate? Would anyone think to calculate lost productivity?

Please consider redesigning the remaining new facilities, and retro-fitting those already constructed to eliminate this disparity. Thank you.

---

If you use the Merritt Parkway, and you're so inclined, you could submit your own comments on the situation here.

30 June 2014

Blogging While Color-blind

Around about a decade ago, I bought a book called 40 Over 40, a book of advice about getting dressed after age 40.

I was bored with what amounted to the uniform I was wearing -- chinos, turtlenecks and blazers for work, jeans and T shirts the rest of the time.

My sense of embodiment and my gender identity were also shifting pretty significantly as the result of an unexpected pregnancy after ten years of infertility, and after that an even more unexpected live birth, and then raising a baby and a toddler and eventually a child, and eventually shedding a deeply felt sense of unreality about it all. Mostly.

The book has a lot of good advice, actually, about dressing for your actual body, keeping your closets organized, only buying -- and wearing -- clothing you love.

There's also a fair amount in the book about color, including the advice to wear clothing to match your hair and eye color. So, over the years, I bought a few items in greens and browns to pick up my eye and hair color.

Ready for the kicker? At some point, I somehow found out that a "brown" blazer I'd bought wasn't actually brown, but plum colored. It took a while, but eventually it occurred to me to ask people about the colors of the other brown clothes I'd bought. It turned out several of them were not brown, but one or another shade of purple.

I do have this vague childhood memory of being tested for color-blindness, and having trouble in the brown-purple range.  But I had no idea that I was, in fact, color-blind: I can distinguish greens and blues and reds and oranges just fine. Yet it appears there's significantly more purple in the world than I can see.

It's a funny thing to learn about yourself after half a century.

28 May 2014

So You Want to Play in Traffic?

You're thinking about riding your bike to work, but nervous? Here are some answers to the questions that might be worrying you.

Problem: You'll sweat on the way to work.
Solution: Bring a spare shirt. Keep deodorant and, depending on the level of formality expected at your office, a couple of blazers at the office. Or even drive in on Monday morning with the week's wardrobe and drive home with it again on Friday afternoon.  If you use hair gel, keep that at the office too and use it when you get there after you take off your helmet.

Problem: You haven't ridden a bike since you were thirteen.
Solution: Practice. Take the bike out early on a Sunday morning when there's not much traffic and, if it would bother you, not too many spectators. Go to an empty playground or a park, and...
  • Practice riding in a nice straight line.
  • Keep your thumbs hooked over the handle bars, and one finger on each brake, and your elbows nice and loose so you don't feel like your fillings are going to fall out every time you hit a crack in the road.
  • Look over one shoulder, then the other, to see what's coming, still while riding in a straight line.
  • Practice signaling left and right, by sticking one hand and then the other wayyy out to the side so nobody can possibly miss it. And make sure you're still riding in a straight line.
  • Come to a complete stop, still in that nice straight line, and then start up again without letting the handle bars sway left or right. Much.
  • Try braking and accelerating while signaling.
  • Practice turning with one hand, and then the other, off the handlebars.
  • Find some parked cars, or a parked car by a building, and practice riding between them. Get to know how much clearance you need.
  • If you can, find a dirt road or a trail and ride around to see how it feels. If you hit a patch of sand or gravel, you'll notice that you can stay up if you can keep the bike in a straight line (there's that again) and keep the wheels turning.
Problem: It might rain.
Solution: Check the weather forecast the night before, and again in the morning. Buy rain gear according to your budget, and carry it with you depending on the chance of rain and the temperature and how uncomfortable you'll get if you get caught out. If you can, get a waterproof/breathable jacket, but even then, see item one.

Today, there was a 30 percent chance of rain in the morning, plus cooling temperatures throughout the day. I biked to the train station in a T shirt, with blazer and rain jacket in my bag; I wore the blazer for the ride from train station to office, and on the way home, wore both blazer and jacket -- for warmth. I didn't get rained on during any of the legs. Layers are helpful year-round, because you'll warm up after 10 or 15 minutes of riding, and temperatures can change quite a bit between 8 a.m. and 5 or 6 or 7 p.m., depending on when you head home.

If you do get caught -- or decide to ride -- in the rain, slow down. Braking takes longer, sewer hole covers and train tracks are treacherously slippery, and you never know what's under that puddle. Also drivers will be less likely to see you, because of crud on the windshield plus because they won't expect bikers out there -- so take extra cautions.

Problem: It's dark.
Solution: Lights and brights.  Your rain jacket can be any color, as long as it's neon; you might also want a reflective vest and ankle reflectors. Put red blinking lights on the back of the bike, on your helmet, on your backpack if you carry one, and a white light on the front of the bike.

26 May 2014

Remembering the Dead

I find Memorial Day complicated: my maternal grandfather fought for the wrong side.

My mother grew up, and I was born, in Germany. For her, there is only "the war" -- World War II, which left her family refugees, her father killed in action. I'm ashamed to admit it, but I'm glad he didn't survive the conflict and I'm glad I never had to meet him.

The story is he served in a tank unit. The story is he was a mechanic. The story is he was a common soldier. The story is he was a lieutenant. A photo shows a uniform with the death's-head insignia. The story is he was wounded and sent home, yet chose to return to combat. Twice.

Some day, I will go into the archives and find out what facts may have survived. I want to know; I don't want to know.

It's small comfort that my other grandfather served in the US merchant marine in that same war, or that my father and several of his relatives served the US military, and even, several generations back, the Union army.

Today, we're exhorted to remember those killed in action for the United States. World War II was surely a just war; the enormity of the Holocaust overshadows much else about the conflict. Yet the US did much that was unjust in that war, interning people of Japanese descent, refusing entry to Jewish refugees, discriminating against African-Americans who were drafted or volunteered to serve.

The wars we have fought since then are more difficult to justify. Yet American soldiers die, or they return alive but wounded in body and soul. Tens if not hundreds of thousands of civilians have died in Vietnam, in Iraq, in Afghanistan. Returning veterans are refused the care they need to re-enter society as successfully functioning civilians, even allowed to die for lack of medical care.

Today's parades, in honoring the veterans and the fallen, seem also to celebrate war itself. We need to find a more nuanced way to remember the past, and acknowledge the realities of the present. We need to learn to seek peace and pursue it.

10 May 2014

A Different Kind of Awareness

May is Asthma Awareness Month, and the Centers for Disease Control wants you to know that "you can control your asthma."
The page acknowledges that "we don't know what causes asthma, and we don't know how to cure it." But if "you" are "living with" asthma, it's your responsibility to keep it under control.
There's more:
Although asthma cannot be cured, it is possible to manage asthma successfully to reduce and prevent asthma attacks, also called episodes. Successful asthma management includes knowing the warning signs of an attack, avoiding things that may trigger an attack, and following the advice of your healthcare provider.
This bothers me for so many reasons, I barely know where to start. 

An "episode" sounds like something you watch on tv.  An "attack" sounds significantly more sinister. 

The grammatical construction of "your asthma" suggests that the person owns the illness, but the construction of all the ideas on the page suggests that the asthma owns the person.

I might live with asthma, I might have asthma, but it's not "my" asthma. And I am not "my asthma."

"You," the person with asthma, are admonished to stay away from anything that "may trigger" an attack.

"May" (why not "will"?) suggests multiple possibilities, and by extension the impossibility of avoiding everything that could trigger, let's call it an "exacerbation," which directly contradicts the insistence that "you can control your asthma." If "we" don't know what causes asthma, how are "we" who "live with" the disease supposed to recognize and be able to avoid all, or any, possible triggers?

My list of triggers includes several foods and additives; airborne things like smoke, dust, mold, and chemicals; various animals; upper respiratory infections; and exercise.

Yes, exercise. I exercise anyway, because it helps to reduce the severity of the disease on a day-to-day level as well as during "attacks," but I have to be careful.

Most of the things that trigger my "episodes" are pretty common.  I don't know if it's usual for people to have such a long list, though.

I cringe when I hear someone sneezing or coughing near me. There are plenty of respectful smokers, but others stand right under the no-smoking sign and light up, or walk down the street waving a lit cigarette, and I don't always see them until after I've inhaled what they're trailing. Eating in restaurants is your basic crap-shoot.

The problem with the admonition to "avoid triggers" is that it lays all the responsibility on the indidivual rather than calling for the community to mitigate potential toxins as much as possible.

The claim that "you can control your asthma" is made twice, alongside the exhortation to "learn to control your asthma." Maybe it's meant to be encouraging: "you" don't need to live with symptoms. But it also implies that a person who has an attack is at fault for failing to avoid the triggers. If you "can" control your asthma, then if you have an "episode," it must be because "you" screwed up.

Reality: asthma is poorly understood; there is no cure; it can't always be effectively controlled. We live with it every day. And we go on living.