As some people are aware, I have been off the internet since the end ofContinue reading
As some people are aware, I have been off the internet since the end of September, when a novel health issue required I begin a (relatively long) diagnosis process. Part of that diagnosis process is minimizing stress; I was ordered to stop work almost immediately, told I couldn’t expand my physical therapy past what I was doing, and had it strongly suggested I stay off social media. A “limited stress diet,” as one of my physicians put it.
I’ve gone through a bunch of tests, and am in the “do they need more tests?” wait and see portion of the diagnostic process, which has also brought with it a new and exciting medicine regimen. All of this should be familiar to anyone who has endured diagnosis by exclusion–or trial and error.
So all said, I shouldn’t be writing this. It is, after all, the internet. But I’m hoping the lack of interaction with others makes this more like YouTube, which is “okay,” and less like Twitter, which is decidedly interactive and not okay.
And what I definitely should not have done? Check the American Society for Bioethics and Humanities annual meeting program. Very little good can ever come from that, although a lot of irritation certainly can–and in my case, a lot of irritation can have a pretty seriously negative health impact right now. So let me be the first to say: I should have listened to my doctor.
But I didn’t. Instead I browsed the program, got pretty irritated at quite a bit… and then found an ASBH session that at least on the face of it appears to be lifted from a conversation I had with an author earlier this year about my objection to their recently published paper, based on an entire body of literature the authors were unfamiliar with. A body of literature I provided references to. Including the faculty profile page of the researcher behind that body of literature.
There was no courtesy FYI; no “hey, would you like to be involved;” “hey, do you mind if I;” no nothing. I wouldn’t have known about it if I hadn’t stumbled across it… which, I guess may qualify as actually ironic, and certainly belongs with a Jagged Little Pill. And while it is certainly possible that the panel was someone else’s idea and the bioethicist I spoke to about it was approached independently, if that happened to you, wouldn’t you at least say “oh hey, I should totally let the person who brought this novel idea to my attention know about all of this, just so they don’t think I intentionally left them out”? Or is that just me and my weird insistence on giving credit where due?
As salty as I am–no, as hurt as I am that someone I thought I could trust would do that to me, would ask why I objected to something and then take my explanations for their own benefit–I can’t even pretend that this is the first time this has happened. THIS YEAR. It’s like the 5th or 6th. It seems that while journal editors don’t want to publish my ideas when they come from me, they are perfectly happy to publish them if it comes from a Name. And these Names don’t appear interested in asking if I’d like to work with them, and can’t even be arsed to thank me in acknowledgements. Honestly, I question why I even have extended trust in the first place–after all, if I learned anything in 2008, it’s that people in bioethics will put their careers first, and should absolutely not be trusted, to any degree.
There seems to be only one solution here, and that’s to stop discussing my bioethics-related ideas with bioethicists. Unfortunately, DMs and eMails certainly aren’t proof enough for theft of ideas accusations–there’s a reason I’m not naming names here–and so my best bet, if I want to continue engaging in public acts of bioethics, is blogging here where there’s at least a public timestamp …or just not engaging in bioethics publicly anymore. Because let’s be honest, I’m not sure a blog post in the public domain would stop people from taking my ideas and passing them off as their own.
A rather telling commentary about bioethics as a field, isn’t it?
It seems like it must be a passage of adulthood, a rite that no one wants to pass but everyone eventually does, that one of authors becoming people, people flawed and awful. For some of us, that rite of passage is picking up beloved books of childhood comfort and realizing just how horribly racist they are, and that no amount of the warmth from Polgara’s kitchen can change the fundamental bedrock of racism that forms the faults and seams of the stories.
For others, the stories remain beloved comforts, heavy and warm and rich with the scent of a fresh bound book slowly worn by the repeated readings, the track of the digital scrolling past on a thin electronic tether to the most wonderful libraries. For those people, the rite of passage is different, worse and better, because what changes isn’t the story but the author, who reveals that they weren’t the person who wrote the beauty that comforted, consoled, and inspired you. But in some ways, you’re lucky. The text? It no longer belongs to the author; it’s your love that sustains it, that breathes life into it, that forms the bonds between people with that shared passion and love. You can take it and make it what you want and will; you never have to give the author another cent, never have to support them, never have to acknowledge them, and you can still have the beautiful, inspirational people living within the boundaries of that book binding, digital or otherwise.
You might have to let them go; it might be the only way you can handle the taint of the author, to turn away forever. But it’s a choice. You can keep the characters, and get rid of the author. They began living beyond the author when you began reading, when your mind gave them form. They are embodied by your imagination, your passion, your love.
It’s not just gods that are made real by your belief in them.
Hi, no, I haven’t used this space much recently, and I’m not sure if I will, but if you’re here, it’s probably because you clicked a Twitter link or did an internet search on my name, and are looking for more information. I’ve got a biosketch and a CV up here, and I have a ko-fi account, for those of you who want to toss a coin to your bioethicist; the tweeting and public outreach is not something I am paid to do, but sharing accurate and non-inflammatory public health/ethics information is something I pretty passionately believe in. So here I am.
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.
[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!