I’m 41 today and it’s a big deal because every day that I live is a day I chose to be in the world and a whole year of sticking around is huge.

40 has been by turns amazing and rough. But mostly I’ve loved how it feels like the perfect age to really go all in on unapologetically being myself and to completely bail on caring about any superficial opinion anyone has of me. It’s also a great age to realize mostly people aren’t silently criticizing me, because they’re too focused on themselves to pay attention to me.

Who I wanted to be at 40 is also who I want to be at 41. I’m doing a good job on all of those. 41 will be a year of maintaining that and having new adventures.

If you want to be part of the virtual celebration of Kimbertide, I offered some good suggestions in 2020 and 2021. I’ll probably do some of those.

Thanks for hanging out with me on the Internet this year, y’all. You bring a lot of love and connection into my life.

I wrote this a week ago to sort through my thoughts on disability on Star Trek. It is essentially a freewrite, not a carefully structured essay.

Some context: I write this as my mom has recently changed from being a person with variable and invisible disabilities to someone with consistent and visible disabilities. She has lost the use of her legs and must ride a wheelchair if she wants to move around independently. But for years, she has had problems with sometimes falling down, for decades she has had chronic illness with debilitating fatigue as a symptom. Disability is not new to her but her recently developed disability is quite different from her disability in the past.

I myself have lived with chronic illness as my primary disability for a long time, though I did not conceive of myself as disabled until the COVID-19 pandemic. My disabilities are variable and invisible, like my mom’s earlier ones. I sometimes have debilitating fatigue or brain fog. I struggle with activities of daily living due to challenges of executive function, rather than physical limitation.

And on top of all of this is my experience as an autism sibling - while this hasn’t impacted me much because Micah’s diagnosis came when I was away at college, I’m still keenly aware of it. I also am perpetually working on foregrounding the voices of autistic people themselves rather than trumpeting my thoughts on it. But it is work, not something that comes to me naturally. I’m too keen on talking about my own thoughts and ideas for that to be my default state.

With all of this in mind, I’m thinking lately about two depictions of disability on Star Trek: Christopher Pike’s experience as a quadriplegic who can communicate only using assistive technology and, for whatever reason, that assistive technology is limited. (Maybe in the 60s it was the best they could imagine? Maybe his cognitive damage is so strong that he can only formulate yes or no as thoughts?) And Geordi Laforge, whose disability is mitigated by assistive technology that not only gives him sight, but allows him to use his sight in ways that people who are born sighted cannot do.

And then there are others as well who I would love more details about. On Discovery in particular, Airiam and Detmer. What about on Lower Decks? Is the character with an implant there using it as assistive technology? Or is it an augmentation? I should look at these characters more closely and look for others as well.

What about Sarek as he nears the end of his life?

There are plenty of possible examples for me to look at.

Today, though, I’ll focus on Pike and Laforge.

Pike’s plight is presented as a kind of death or “the death of the man I am now,” as Pike tells Spock in SNW 1x01. In TOS (I’ll admit I have yet to watch this episode and have only read about it on Wikipedia), Spock kidnaps Pike and takes him to Talos IV where he can live with the illusion of his body as it was before his disabling event. What does this mean about disability in Star Trek? How does the illusion on Talos IV work? Is he actually lying in a bed somewhere? Rolling around in his chair? He gets to live out his days with Veena and that’s nice but what is the nature of this “solution”? And what does it tell us about disability in the world of Star Trek? I need to watch “The Cage” before I can know at all. And also perhaps to revisit Pike’s experience of the future on Discovery and take notes on his mentions of it in SNW.

(Also who else is writing about Star Trek and disability?)

Now Laforge. This is someone whose assistive technology effectively eliminates his disability but who 1. is once again disabled if his VISOR falls off and 2. if I’m remembering correctly, is always in pain and that’s the tradeoff for using the visor.

(I feel like there is somebody else on Trek who’s always in pain but I wonder if I’m actually thinking of Miriam from Bloodstained: Ritual of the Night.)

Geordi Laforge’s disability isn’t a thing until it is. I’ve been falling asleep to the TNG episode, “The Masterpiece Society,” in which a colony has systematically bred its citizens for optimum living, including eliminating disability. Laforge reads this (and I do too) as a suggestion that as a disabled person, he has no contribution to make to a society. And then there’s delicious irony that the technology from his VISOR is just the technology they need to save the colony from being essentially doomed by tectonic activity responsive to a star core fragment. (Still not sure what that is, though I can guess from the words. Maybe I’ll look it up.)

I talked to W about this last night, and he suggested that it’s not that Geordi wouldn’t have been born, but that he would have been born sighted. I think this is a set of hypotheticals that it’s hard to think through. To what extent do our disabilities make us who we are? Are we the same person if we’re born without them? This is something that we’ve thought about a lot in our family with my brother and whether being able to isolate an autism gene would change his life. We wouldn’t have wanted to terminate Mommy’s pregnancy with him but it might have allowed us to prepare better. But if it were possible to manipulate the autism out of him, would he then be himself? I know he doesn’t think so.

Neurodivergence is a different sort of disability, I think, than physical limitation. (I’m keenly aware of this deficit-based language and know that I need to change it before I write anything for wider publication on it.) We want autism acceptance, neurodivergent acceptance.

But there is a real tension between the social model of disability and the medical model of disability. Is the world what disables you, or your body? I think it’s both. Star Trek sort of shows us with Geordi that it can be both. The Enterprise is a pretty accessible place, as long as the turbolifts are working, and Geordi has technology he needs to live and work. By the social model of disability, as long as he’s wearing his VISOR, he’s not disabled.

But he is sometimes in circumstances where he’s not wearing the VISOR, especially in environments that are NOT DESIGNED. And that limits his potential activity, and so in those cases, it is his body that disables him.

I need to be careful not to feel like I have to do a complete literature review on critical disability studies before writing about this any further.

Katy Peplin has a great Twitter thread on the difference between sharing your process with “This is how I do it” and “This is how you should do it.”

one thing i think about a lot as a coach and person:

there's a BIG difference between "this is how i did it" and "this is how it works best / this is how you should do it"

— Katy Peplin (@ThrivePhD) June 15, 2022

I try to write with the former attitude. Dr. Raul Pacheco-Vega does this and it’s one of the things I most appreciate his writing.

I thought today I’d share one thing that address how I do it, wherein it = almost anything in life at all.

Piecemeal. In teeny, tiny fragments. I’ve written before about parenthood and kintsugi.

Yesterday, I was thinking about how I want to write more, and I had a thought about writing that was so good, I wanted to capture it. This happened in literally the one minute before M’s swim lesson started, so there I was on a deck chair by the pool with M basically in my lap (and he’s big, y’all, I love having him in my lap but it’s very different now), and took out my phone and typed out these words:

There will never be time to write. This is my life now. Prismatic. Fragmented. The bits inside a kaleidoscope. They make beautiful patterns and they can be arranged in new ways but they aren’t large. So how do I write in the fragments?

“How do I _______ in the fragments?” is the guiding question of my life. There is perpetually a giant pile of laundry at the foot of my bed. I do put the laundry away, but I put it away one item at a time, while I’m getting dressed and in between finding the things I want to wear on a given day.

I’m working on binding a little pamphlet-bound notebook for M. I fold a page here and there when I can.

This is how I get things done. It’s necessitated by two things: parenthood, which carries with it the eternal threat of interruption, and chronic illness, which means that while my mind loves and craves routine, my body disrupts my ability to stick to it.

So I live by this mantra: what I can, when I can.

And that’s how I get stuff done.

Transcript:

Hello friends. I wanted to write a blog post about sweetweird and its relationship to hopepunk and other narrative aesthetics, we’ll call them, because they’re not exactly genres. But I am having some peripheral neuropathy today. And so I’m giving my wrists a break, and I’m gonna just record a podcast and then I’m going to upload the transcript with it so it’ll be effectively a blog post.

So sweetweird. Sweetweird, in case you are not constantly on the science fiction and fantasy internet as some of us are, is a term coined by Charlie Jane Anders. She first coined it in her book. I think it’s called Never Say You Can’t Survive and it’s like half-memoir, half-writing craft book, and she proposed it as an alternative to grimdark. So in case you’re not familiar with grimdark, it is fantasy or science fiction that’s set in a really hopeless, gritty world, and the most commonly thrown around examples are the are the Game of Thrones TV series/the Song of Ice and Fire books, or what I think is an even better example, The Blade Itself. So there’s really no one redeemable in those stories.They are fantasy stories without real heroes. When there are people who seem to be heroic like Jon Snow, things go badly for them. The general sense is that the world is terrible, and it’s just gonna stay terrible, but let’s read about some interesting happenings. Grimdark was fine.

Until 2016, when a lot of people started to feel that things went very badly, myself included. And so from 2016 to 2019, there was a bit of a shift that author Alexandra Rowland noticed and they called this shift hopepunk. Hopepunk is stories, especially fantasy and science fiction, but a lot of people have offered other examples, where the world is terrible, and it’s not going to ever be fixed 100% but it is worth fighting to do what we can to improve it anyway.

So in addition to being opposed to grimdark, this is also opposed to the idea of noblebright, which is where you get things like Lord of the Rings, where you have some foreordained hero who is guaranteed to save us all and they have a birthright. My easiest go-to example of noblebright is Buffy the Vampire Slayer. Some people would say it’s something else. But Buffy has a destiny. There is an evil. She’s the one girl in all the world chosen to fight it and she consistently defeats it. New evil springs up, but it’s not the sort of ongoing, miserable world that she’s in. It’s that sometimes new evil pops up and that’s just when we happen to be watching her show because it’s probably not as fascinating to some people to watch she and her friends hang out. I would watch that, but not everyone would. And so Buffy is a great example of noblebright.

Angel, which is technically a spin off of Buffy, is a great example of hopepunk and it’s one of the examples Alexandra Rowland gave and it’s one of my favorite examples not just because I love it very much, but also because it sort of is quintessentially about this. In season two of Angel there’s an episode called “Epiphany.” And there’s a great quote from it, written by Tim Minear who is one of my favorite writers and himself, I would argue, a pretty hopepunk kind of guy, based on what we know about him from his writing, which is all we can know really. He also wrote the show Terriers, which I would argue is also hopepunk. So check that out. But the quote is,

“I guess if there’s no great glorious end to all this, if nothing we do matters, then all that matters is what we do.”

That is as mission statementy for Angel as you can get. And it is the most hopepunk arrangement of words I think you can have and you see it going on through season two of Angel all the way up to the very last moments of season five when it’s very clear that these heroes are fighting a war that they cannot win. And they do it anyway. And there’s a great moment and a great quote there that I don’t want to spoil in case you’re a person who hasn’t watched Angel, but the world around them is horrid. It’s never going to get 100% better. The forces they face are not readily defeated. They keep coming back. They’re not like Buffy where new evil comes. It’s the same old thing coming back over and over again. And so that’s hopepunk, in a nutshell basically, I think is Angel.

So sweetweird. Charlie Jane Anders offers as a different response to grimdark and alternative to noblebright and a lot of people myself included at first were like, “Wait, don’t we already have hopepunk for this?” but then as I learned more about it, I saw that they are related, sweetweird and hopepunk. I call them cousins, but they’re not identical. And the quick way I like to say this is that hopepunk is global. And sweetweird is local. So in hopepun,k you live in a hellscape and every day you muster your energy and you go out and you fight the bad of the world. And you just keep doing it because it’s worth doing. And I think from 2016 to 2019, that was a storytelling mode that we really needed. Because it felt like all right, we can do this. We’re going to have to fight it every step of the way. And it will keep coming back. But we can do that we can improve the world at least a little bit by doing that. And even into 2020 hopepunk was really something that seemed good.

But now it’s 2022 and I would say I don’t know about y’all, but I do know about y’all. We’re all exhausted. We live in the hellscape and it’s hard and it doesn’t always feel like we can make a difference. It feels like the places where we can make a difference are small. Sweetweird is an alternate way of approaching the hellscape. So the little phrase that I’m very pleased with myself for coming up with in the comments on Gwenda Bond’s newsletter about sweetweird, is that sweetweird is about the idea that even within a hellscape you can create a haven.

I think the best example of this is The Owl House and I’m gonna go to that in a minute. But just a quick shout out to The Book of Mormon which posited this in its big finale way back in 2011 with the idea that we can make this our paradise planet. And you know, that does sound bigger than sweetweird, but the idea I think is still there. So The Owl House is not the only example Charlie Jane Anders offers. She suggests many trends, especially in animation. I haven’t seen all of them. I am a little familiar with Steven Universe and Adventure Time and I’ve watched all of the Netflix She-Ra and I think those are sort of stepping stones on the path but that The Owl House, which I also have not seen all of but have seen enough of to have a sense of its vibe, is sort of the perfected sweetweird.

So in The Owl House, Luz, a middle-school-aged, I believe, girl longs to live in a fantasy world and just so happens to find herself in one instead of ending up at summer camp like her mom had planned for her. And immediately she’s very excited because she’s met a real witch and there’s this great moment in the pilot where they leave the witch’s house and Luz sees this fantasy world she’s ended up in for the first time and the place is called the Boiling Isles. And it is miserable. It is a literal visual hellscape. It looks like a terrible place to be. There are a lot of bad things happening there all the time. It’s a harsh and unfriendly world. But Luz and Eda the Owl Lady, the witch that she works with, and King the tiny, adorable — it’s not actually cat but a lot of ways feels like a cat to me — creature bent on world dominatio,n and then Luz’s school friends, and then over time Luz’s frenemy/love interest Amity, all build this sort of cocoon of love together. I would say that sounds more lurid than I meant it, but they create this group of people who all love and care for each other in the middle of the hellscape and they’re not trying to turn the Boiling Isles into not-a-hellscape. The Boiling Isles are a hellscape. It’s where they’re at. And so they are creating their own place here.

And so for me, the thing that makes the most sense with sweetweird in our current moment is that sweetweird is the story we need when we’re too exhausted for hopepunk. When we need time to recover and to remember that we are people who can do things. But we’re not ready to go out and be the people doing those things in the face of the horrible world we live in. Then we can retreat to these spaces of love that we have built for ourselves. And so that’s sort of the purpose in my mind of sweetweird and the distinction between sweetweird and hopepunk as a visual aesthetic.

A lot of the examples of sweetweird are a very specific vibe that is not one that resonates with me though I’m very happy so many people have found them resonant — specifically, Adventure Time and Steven Universe and The Owl House. But I have lately been into woodland goth which is a whole other blog post but I think can be related. Except there’s you know ominous fairies and stuff. But but still this idea at least in the book I just read, War for the Oaks, which is basically one of the first books to ever be an urban fantasy, even in the face of a giant fairy war, the main character Eddi builds a little band of people who all play together, and their music is related to fairy and to magic, but it also is its own thing and the connections they build with one another stand independent of that big fairy war. So it’s a similar idea, though the book itself is not sweetweird.

All right. That was a lot more than I realized I had to say and I’m super glad I said it out loud instead of typing it. I will post the raw transcript with this with maybe a few corrections because it seems Otter.ai does really not understand hopepunk as a word but yeah, that’s that. I hope you have enjoyed listening to and/or reading this and I hope if sweetweird sounds like the story aesthetic for you that you go out and enjoy a lot of it. Bye

This transcript was generated by otter.ai

Hello, friends. I want to talk about something from Stranger Things 4 that is brilliantly done. And that’s a Star Wars reference.

There are a lot of iconic quotes from Star Wars (and I mean the whole shebang, not just A New Hope). “Use the force, Luke.” “Luke, I am your father.” “I love you.” “I know.” “Do or do not. There is no try.”

People use these to varying effect, with varying degrees of acknowledgement. Sometimes it’s hackneyed, though I can’t think of any examples right now.

Sometimes it’s brilliantly used to reveal character, like in 30 Rock:

Liz says, “I love you,” Criss says, “I know,” Liz says, “You Solo’d me,” and then you’re certain that this is a love that will last.

But in this case, not only is this a Star Wars reference, it is a Star Wars reference that is then diegetically marked as a Star Wars reference.

Star Wars is 45 years old. It’s hard to make a Star Wars reference feel fresh. But Stranger Things 4 does, and here’s how (spoilers!):

This beautifully mimics this scene from The Empire Strikes Back:

The 20-to-1 odds of rolling a 20 on a 20-sided die make it line up extra beautifully with Han Solo’s odds of 3,720-to-1.

“Never tell me the odds” is something that most Star Wars fans will recognize as a reference, but in Star Wars it isn’t said with the gravity of so many of those other commonly known phrases. It’s something that people who like Star Wars okay, or are dimly aware of it, aren’t super likely to recognize. And it’s something that doesn’t take you out of the flow of the scene in Stranger Things. We’re not stopping the action to make a Star Wars reference: we’re making a Star Wars reference in much the way actual D&D players do, in the context of the actions surrounding the game.

I think this is probably now my favorite use of a Star Wars reference. Sorry, 30 Rock.

The chat runs by much too quickly to scroll with it while presenting but I love the vibrance of #FanLIS2022 chat so I wanted to go through and respond to people’s comments from my presentation, in addition to answering direct questions. So here we go!

procrastination and indecision then instantaneous dissertation topic is such an adhd mood

I’m not diagnosed, but you’re not wrong.

embodied fannishness

YES. More studies on how fans express their fandom with their bodies, please.

I’m kind of curious to see how many Cosplayers base their information process on others'.

This is a great question. I only got at individual practices and how others’ shared resources are an influence, not shared process, but I did have 2 participants collaborating on an epic Yuri On Ice wedding cosplay who used similar curation methods. I wonder if groups that frequently collaborate have more commonalities in their information practices.

I feel there is some modesty that comes with cosplayers and that would refrain them to define as creators

I think that’s right. They don’t necessarily identify as creators, though I did have 2 participants refer to themselves as “makers.” But whether they’d use the term or not, the position they put themselves in with both trial-and-error and documentation of their construction processes is information creators.

I was able to recover my Noter Live log, yay! I’ll go back and collect the tweets from after my reboot later.

In reply to Star Trek: Discovery Has Problems (& How They Can Be Fixed) (Trek News) by Bill Smith:

I agree with Smith’s assessment of Discovery. Each season, the stakes are bigger. In Season 4, they were literally extragalactic. Once you’ve broken the galactic barrier and made first contact with a species living beyond it, where else is there to go?

The race to solve the puzzle box is exhausting. The hyperfocus on serialization leads to a lot of intriguing threads being introduced and tied off more quickly than I would like. For example, in Seasons 3 and 4 we saw what looked like they were going to be mental health crises for Detmer (PTSD from the jump into the future), Tilly (depression related to existential crisis), and Culber (burnout). In Detmer’s case, I don’t recall being shown the road to recovery at all. Tilly seemed to have two episodes of feeling bad that were magically fixed by deciding to become an instructor. And Culber I guess just really needed a vacation?

I really enjoy Discovery. In fact, I enjoy it so much that I wish there were more of it so we would have time to devote a whole episode to each of these characters.

I love Michael Burnham. But I also love so much of the rest of her crew. TNG started with a focus on the bridge crew and especially Picard, but opened up to give us time to get to know O’Brien, Barclay, and more. I wish Discovery had the breathing room to do the same.

I especially agree with Smith’s point here:

One of the things that Star Trek: Discovery did exceedingly well in Season 4 was First Contact with Species 10-C, the originators of the Dark Matter Anomaly.

It was its own challenge in unlocking the mystery of the DMA and I thought that aspect was something that the show did really well. It took this concept of seeking out new life and new civilizations and put a 32nd-century spin on it.

Discovery really leaned into that first contact situation hard and it worked. For 56 years, Star Trek has taught us that the unknown isn’t always something to be feared, but we should always strive to understand. There isn’t always a “big bad villain” when the puzzle is assembled or, sometimes, we find out that we are the villain however unintentionally.

These are the types of stories that have always found their way into Star Trek—from Gene Roddenberry’s first script right up to today’s iterations of the franchise. These are Trek’s roots and when Discovery revisits them, it works brilliantly.

Watching everyone work together to make first contact with the 10-C was exhilarating. It had all the delight of Picard figuring out the speech patterns in “Darmok” with an added bonus of getting to see a bunch of different people work together, leveraging each of their specialties to shine. This is foundational Trek stuff and I love when Discovery puts a spin on it.

I hope the writers will go a little softer in Discovery Season 5, giving it room to breathe. I look forward to seeing what they do.

🔖 Read How I Build My Common Place Book (Greg McVerry)

McVerry generously summarizes his workflow:

• Document impetus of thought (often after the fact)

• Collect initial bookmarks
• Ask in networks, bookmark your queries
• Collect research, and block quotes or use social annotations
• Begin to formulate thoughts in random blog posts
• Start to draft the long form thought
• Publish an article on my Domain.

In case it would help other people, here’s how I did it. I would have something that looked like this:

9
00:00:36.900 –> 00:00:40.560
Kimberly Hirsh (she/her): Do you agree to participate in the study and to have the interview audio recorded?

With the help of this guide from Drexel and replies to this Stack Overflow post I now can remove the number, the timestamp, and the two extra lines created when I remove those. Here’s how I do it.

1. Open the VTT file in my advanced text editor.
2. Use the find and replace feature.
3. For the thing to be replaced I use the regular expression ^[(\d|\n)].*$. You don’t need to know what a regular expression is. Just copy and paste that little code bit into the “Find” box.
4. Make sure either “Regular expression” or “GREP” is selected.
5. Click “Replace” to test it once and be sure if it works.
6. If it works, click “Replace all.”

For BBEdit:

7. Paste ^\s*?\r in the “Find” box.
8. Make sure the replace box is empty.
9. Repeat steps 5 and 6.

For Notepad++: 7. Then switch so that “Extended” is selected instead of “Regular expression” or “GREP.” 8. Paste \r\n\r\n in the “Find” box. 9. Put a single space in the replace box. 10. Repeat steps 5 and 6.

I hope this is helpful!