Life as an Extreme Sport

Ahoj, Praha!

Really enjoying the Czech Republic so far. Spent a crash course this morning on DuoLingo–something I should have done a week ago–just to get hello, good [time of day], please, and other basics down. I just feel bad when I’m ordering and everyone has to default to Dumb American, ya know?

The language is really pretty. Nick was mentioning yesterday that he has a hard time wrapping his head around it, and I’m not having that issue, which I largely think is because of my time noodling around Hungarian. Some of the consonant pairs–like the one that brings you Rocza–are just comfortably familiar.

The aloha of the language is “ahoj”–and yes, that j is pronounced like a “y.” It’s a very casual hello/goodbye, meant for friends and family, but nonetheless, it amuses me. Talk Like a Pirate Day, every day!

Plus, I just like Europe. I like the cultural foundations, like what you eat for breakfast, or the fact that sparkling water isn’t carbonated to soda pressure. I like how green it is, even in the city center, the age of the cities, the variety of architecture, even the structure of neighborhoods. Mostly, I just feel comfortable here–and so far, “here” is every city I’ve been to, with the possible exception of Dresden.

We won’t have a chance to do much exploring beyond where we’re eating tonight and tomorrow until next week, but that’s okay. The heatwave will be over then, so less chance of OH GOD MELTING, more time for all the photographs…and maybe a try at plein air painting.

Once More, Across the Pond

[Written 2pm CEST Wednesday June 25.]

We are comfortably in our hotel room in Prague. Uneventful flight; I either have the best noise-canceling headphones ever, or the FOUR kids under eight that were sitting directly across from us were really angels in disguise.

We landed around 9:30am local time (3:30am ET), which meant I was still wide awake––insomnia training is good for something! There was a ride waiting for us, and our original hotel… sigh. It was beautiful; old, elegant, owned by the Czech Academy of Science, which is connected to it by a garden.

It also didn’t have an elevator or en suite bathrooms (they were as far from the bedroom as you could get without going downstairs, in that they were NEXT to the stairs and we weren’t), and the path between the bedroom and bathroom was full of multiple level shifts in the floor and wasn’t lit at night. ?

On top of those concerns, there’s a heatwave in Prague right now, and while I wasn’t expecting A/C in an old building, I did at least think there would be fans.

There were no fans. Instead, windows were just open. Which might be okay if you could get a cross-breeze between windows, but there was only one window in our room… and while it was rose- and jasmine-scented when the breeze was blowing when it wasn’t? The smell of recycling and trash, from the trash pile right below our window.

Did I mention ??

So Nick called the organizer he’s been working with, just to see if they had recommendations of where we could stay. While the room was paid for by the conference, we obviously had no expectation of them doing anything, since this was an “our bad” situation–Nick had forgotten to mention accessibility needs, and normally we can make things work, but the health-threatening heat wave kinda creates inflexibility.

Instead, David showed up, asked Nick careful questions about my needs, and his assistant promptly booked us into a hotel across the river, in what appears to be a vibrant part of the city–and then he drove us there!

Our new hotel has also been awesome; the assistant made sure there was an accessible room, and apparently also relayed my needs, so before we arrived the front desk staff massively chilled the room so it would be comfortable for me, and placed a shower seat in the bathroom, “just in case.” They’ve also asked if there’s anything else they can do to help improve accessibility for me, just let them know.

I am just so impressed. I can’t think of the last time I had to do the “oh so hey, broken body here with specific needs” and… had them met. Had them OVER-met. With no fuss or anger or blame or anything other than apologetic “so sorry to put you through this.” It’s so…novel and strange. And I just feel so…welcome!

When CRISPR Evokes Fear “Gene Editing” Doesn’t

I’m seeing this NPR CIRSPR trials article going around, with comments ranging from the relatively mild “here we go” to the more typical doom-and-gloom engineering humans into super-race/extinction/X-men/choose your X-related catastrophe. And while the Editas one (still) concerns me—I don’t think the tech is where it needs to be, and I don’t believe anyone will stand up to the founders of Editas because of who they are–I, overall, am not at all fussed about these trials. Why? Well, take this Penn cancer study. It’s not like this is NEW. The tool, CRISPR, is, but it’s just changing the kind of tool being used for gene editing. We’ve been gene editing for disease treatment for a while now.

For example: on Weds, there was a paper in NEJM using HIV to cure bubble boy syndrome. How? HIV was the gene editing tool. The cure was cool and new, the tool was not.

But because it lentiviral gene therapy, not CRISPR, no one blinked, even though it says “gene therapy” in the very title of the paper.

CRISPR seems to evoke a strange panic with people; fundamentally, people are treating it as if it’s some kind of new thing. It’s not; it’s just upgrading your college student knives to a really nice German set after your first big adult paycheck.

*Content modified from a comment originally published on Damien Williams’ Facebook.

Jazz Hands vs Clapping – One is Not the Other

Oh for the love of – there’s a news story going around saying that the University of Manchester Student Union “banned” clapping, because it’d disruptive for speakers and can cause issues for students with sensory issues, and told students to instead use “jazz hands” to convey applause, like sign language!



So in other words, the University of Manchester Student Union asked students to applaud, and folks who’ve never chatted with a deaf person or been exposed to a signed language assume jazz hands is just the same as sign language, because it…involves hands?

Ah yes. Because they are so similar. (They are not similar at all.)

I mean, if you want to talk about language constructing the world and Othering, here you go; you couldn’t ask for a better example. Because at best, the media coverage of this SHOULD read “clapping out, clapping in at university – student union encourages silent applause” or somesuch to be accurate, but they went for the evocative and absolutely incorrect, Busby Berkeley frill of “jazz hands” instead. So think about it: what does BBC or ITV or anyone else GAIN from characterizing a move towards a silent applause as “jazz hands” rather than “signed applause” or “silent clapping”? It’s about how we construct worlds – and exclude people. Jazz hands and spirit fingers are punchlines, often literally. So what does that say about the writers’ view of signed languages? (Here’s a hint: nothing good.)

Ableism isn’t always about access, it’s also about environment. Using someone’s native (signed) language as a punchline, delivered while simultaneously deriding the needs of students who can experience sensory overload and the thoughtfulness of students thinking about how to make their spaces more inclusive of multiple needs and languages, is a pretty special level of “hey, you’re being a jackass.”