Friday, August 31, 2012

Story Time!

I don't have enough thoughts to make a Friday Five today, but I am putting my best foot forward toward keeping up a blogging schedule Thus, instead of a Five, we are going to have Friday Story Time!

Once upon a Friday, two weeks ago, I stood outside of the Center for Independent Living office, waiting for the paratransit company (known as The Ride in Boston) to come get me. I leaned against a mailbox, my backpack at my feet. I'd just finished instructing interns at one of our weekly job skills workshops and wore a skirt and nice top, unlike most of the people in the area who embraced casual Fridays.

An older lady came around the corner. Typical Bostonian woman with well-cropped white hair that did not try to reach for the heavens, in the way of the southern women I grew up around. She strolled down the street clutching her Macy's bag, but stopped when she saw me.

"Do you need help, dear?" she asked.

With what, existence? I thought, followed up by bewilderment about why she'd asked me this question. The area definitely had (has) its share of homeless people, many of them with disabilities. Last time I checked, they do not have frappucinos in one hand and an iPhone in the other.

The Ride car came around the corner. I pointed.

"Oh, you're waiting for a ride? Okay."

This is only the beginning of the story. It had been a twenty-four hour period of absurdity, starting with the conversation my morning Ride driver had with the (also older) lady in the front seat. Both of them were respectable, and yet the discussion culminated in his outlining where the strip clubs in Boston were now, as opposed to where they were twenty years ago.

The afternoon's ride driver reminded me of the morning's--glasses, gray hair--and was similarly chatty. He fired questions at me as we merged into downtown traffic. "Is that a Jewish place? It's on Temple Place."

"Um. No. No temple. Kind of like how School Street has no school." I took out my headphones, hoping he'd realized I wasn't in the mood to chat. Sometimes I have really good conversations with drivers. Sometimes I just want to go home.

"Oh. Yeah. Did you watch the Olympics?"

I slid my headphones onto my neck. No message gotten. "Some. Gymnastics."

"Follow the Red Sox?"


"If you don't mind me asking, what's your condition?"

I fell silent. It was not an unfamiliar question, but I assumed he'd had disability etiquette training and rule one is that you DO NOT ASK THIS QUESTION.

"Um....It's a genetic skin disorder." (NB. I don't actually know if it's genetic. But I had no idea what to say.)

"Oh. Okay. So it's not elephantiasis then?"


"Oh. Do you follow the Red Sox?"

I'm not sure what went on in this guy's head. I got the impression that he might be somewhere on the autism spectrum, because I associate this kind of rapid-fire personal questioning with a few people I know who are. And it's not really the question that bothered me, it's the context.

Ride drivers provide transportation for people with disabilities who cannot always ride the T. Our expectations for the experience, therefore, should not be significantly different than on a train or a bus. Get in, maybe pick up some other people, maybe take them home first, go home. I don't expect to have to field personal questions anymore than I expect a woman on the street to assume I need help when I'm not showing any signs of distress.

I went through the motions of calling The Ride to report the incident and discussed it with my supervisor at work who helped me get The Ride in the first place.  She was very apologetic, and at first I asserted that I wasn't bothered by the event, but I worried that someone else would be if he repeated it.

Really, though, it does bother me. My disability affects my life every day, in ways I can't enumerate. However, I forget that it also affects people's perceptions of me. I like to think that in accepting paratransit, I haven't forfeited my right to not be reminded of that.

Maybe I'm wrong. Either way, the whole event was the most absurd thing that happened to me that weekend, which is saying something because the next day my roommate and I went to see Harry and the Potters...

Wednesday, August 29, 2012


I'm afraid of elevators. Not in any phobic sense--I use them nearly every day, no time to be phobic--but that's the problem. Statistically, I will probably get stuck in one someday. I use them statistically more than most people. Also, I have a tendency to use them in places where most people wouldn't. It's one thing to get caught in a car with seven people in a well-staffed building in Manhattan, You've Got Mail style. It's another to listen to the slow groaning of the lift in my apartment building reluctantly taking me and my bag of books to the second floor.

Recently, my roommate and I had a close encounter of the elevator kind. We went to see The Potter Puppet Pals at a venue in Central Square, and the bouncer asked if I'd like to use the elevator.

"Sure," I said.

He opened a door behind him, leading to a tiny room with a button panel on the wall and a big red button next to it.

"All right," he said. "It goes slow, but it goes. I'll control it from out here--Oh! Don't touch that button."

Kathleen leapt way from the big red button, and I began to reconsider this whole idea. We'd both been watching a lot of Buffy lately, we did not think this would end well.

"Okay! Oh. It's not. Here--," the bouncer reached in and fiddled with the red button we'd been instructed not to touch.

"Stairs! We'll take the stairs!"

"Are you sure? It's--"

"Sure, very sure!" To cement this assertion I exited the elevator before his red-button pushing sent us plummeting to our dooms.

I had the choice. The same way I usually avoided the similarly terrifying elevator in my undergrad academic building. The way most able-bodied people do when faced with a climb of less than a few stories.

Many people don't. For many people with disabilities--myself usually included--elevators aren't a convenience. They're essential. And having a horror-movie-esque room that descends is not enough. Having a creaking car with a phone I'm not entirely sure would contact anyone isn't enough. Not having an alternate route to downstairs seating because you have seating upstairs isn't acceptable--I'll go to a Panera with an elevator (granted, you have to go to an adjoining building, but still) before I'll go to a coffeeshop where I'd have to carry a drink, my cane and myself upstairs.

At least, though, humanity didn't readily adapt these. Paternoster elevators are a concept I discovered this week reading A.S. Byatt's Possession. Aside from simply being a terrifying idea (video below) they are a prime example of elevator as convenience as opposed to necessity.

What things that are convenient for others are essential for you?

Friday, August 24, 2012

End of the Summer

I had my last day as a job coach today. We had a luncheon for the interns and their supervisors at a bistro downtown, and I said good-bye to my coworkers. Most of them I'll definitely keep in touch with, but the program is over. I'm going home for a week, and then it will be time for classes to start. I'll go back to student life.

I got a lot of writing done this summer. I revised two manuscripts--one of them an R&R--and prepared to query a third. This more than meets my overall goals, but it still feels weird that the three months have passed already.

This semester is going to be intense. I already have two long emails from my advisor about my independent study, and we've been assigned readings for my other class. I believe a writer should always be writing, but my goals for the next couple of months aren't manuscript related (unless I get revision requests!). Rather, I want to hone my craft. I'm done with the MFA coursework portion of my degrees, and thus have to self-direct writing studies. It'd be pretty easy to never pick up a craft book again. I want to make an effort to do the opposite. Pick up my craft books, do the exercises in them.

I want to learn how to form better prose, something that isn't talked about as much in instructional books or blogs. I'm looking for people who want to make this a goal too, so we can exchange writings and critique, if anyone's interested!

What about you, what are your fall goals?

Monday, August 20, 2012

My First Wrock Concert

On Saturday I went to see Harry and the Potters with my roommate. The Potter Puppet Pals also performed.

We live in a world where so-called grown-ups make their living singing songs and performing puppet shows about a fictional character. I cannot express how much I love this.

Roomie and I are planning on going to LeakyCon next year, come hell or highwater. It's in Portland, which is not an easy trek from Boston, but I'm determined that we'll figure it out. There's something incredibly amazing about being in a room full of people who love what you love and are willing to sing about it.

Friday, August 10, 2012

Living in Holland

Recently, I read a memoir written by Kelle Hampton, who is the mother of two gorgeous little girls, one of whom has Down syndrome. I've been a fan of Kelle's blog for about a year now and adore watching her girls grow through the beautiful photographs she posts.

On both her blog and in her book, Kelle is incredibly honest about the emotions she felt around her daughter Nella's birth. She has since come to terms with Nella's disorder, and I very much admire the way she is raising her little girl. However, as a person with a disability I always find it incredibly hard to hear about parents who talk about having to reconfigure their dreams for their child, or accept their challenges, or other euphemisms for this. Often, people reference the infamous Welcome to Holland essay, which is a narrative that compares having a child with a disability to packing for a trip to one country and landing in another.

I've never been a parent expecting an able-bodied child. I've never been an able-bodied person. And every day,  I come to terms with the limitations of my own disability. But I've never had to know my parents were disappointed or upset in anyway when I was born. I'm adopted. They knew what I was getting into. My entire life has exceeded expectations based on what they knew the day they got me. I cannot imagine coming across a book or a blog where my mother admitted to being devastated at my birth for whatever reason.

I don't fault Kelle for her honesty. I think it's brave of her to admit to her experience, and it's important for other people to be open. Part of me, though, just wonders what happens if Nella reads her book ten or fifteen years for now. No matter how little impact her disabilities eventually have on her life, I can't help but wonder how that would affect her--how any child is affected by knowing that their parent was upset at their diagnosis--at a part of them.

I don't know what the answer is here, but it's something I wonder about.