My talk at church

Several of you have emailed to ask how the talk at church went.  You know, it felt really good!

I so rarely give talks--I lead discussions all the time, but "giving a talk" is less familiar terrain.  As I was getting the talk ready, I kept reading over it, thinking, "This doesn't really follow this.  This feels scattered."  I think what I wrote to Claire was that it's "hodge-podgy."  If a student had turned it in to me as an essay, I would have noted that it had a lot of great ideas, but that it didn't really have good transitions.  It was time to go to church, though, so I had to take the talk as it was and trust that it would be just fine.

The thing I realized is that when you're giving a talk, your performance--your voice, your use of your body, your timing--can substitute for clear written transitions, even a clear thesis.  And that's what happened!  "Embracing Human Diversity, or the Welcome Table" seemed to flow just fine, and folks were interested and had things to say to me afterward.  Only two people had prickly things to say--everybody else was quite warm.  (I'll note that I feel it's good to have people with prickly comments--if I don't piss anybody off, I'm not doing my job.)

I talked about ways in which lefty smarty-pants (a term Biffle came up with) are all about embracing diversity--which is great!  And I gave some examples of how the Unitarians' embrace of diversity had won me over, despite my intense suspicion of any religious community.  Then I noted ways that well-intentioned folks can become complacent and complicit in the oppression of others.  I quoted Peggy McIntosh, Harriet McBryde Johnson, and bell hooks.  I talked about my own lived experience.  I talked quite a bit about disability and about Maybelle.

Apparently the talk will eventually become a podcast, and I'll let you know when that happens.

The truly great thing about the service is that all the pieces came together astonishingly well.  I wasn't entirely sure what I was going to say until I got up and said it, but I'd invited Biffle to do the music, and I'd invited Drisana McDaniel to do a couple of readings.  Biffle brought in the Beebos, a fantastic bluegrass band made of him, Bob Sachs, and Gary Hewitt.  The congregation clapped after every single song--even the offertory!  I don't believe we've ever clapped for the offertory background music before.

Drisana did two readings that were weirdly well connected to the things I was saying.  I'm sorry that the whole service won't become a podcast, because the music and the readings were a big part of what made the whole experience so satisfying for me.

After the service, we went to Jack's Cosmic Dogs for some celebratory Unitarian food.

I'm speaking in church tomorrow. No, I'm not kidding.

It's been a big weekend around here.  This morning was Maybelle's birthday party, which I think I can appropriately characterize with the following two pictures:


Please notice who's on this delicious cake:  Dora and Spider-Man.  That one had to be special ordered (actually, we just ordered the Dora cake, and they gave us a Spider-Man to go with it).  Almost every bit of the cake was eaten at the party, and I'm going to eat the rest of it tonight.


And this looks like a version of the womb dance, but it is, in fact, Claire's greeting to Maybelle when Maybelle ran up delighted to see her.  Lots of stuff like this happened at the party:  kids getting thrown into the air, spun around, flipped upside down, etc.  When the sugar rush kicked in, the kids were quite amazingly active.  And the party was over before the sugar crash hit, so it was well planned.  Lots of fun, and we're so glad that so many people came out to wish Maybelle a happy birthday!

And now the news that the title tells you:  I'm speaking tomorrow in the Charleston Unitarian Universalist church.  Over the summer we do low-key services in the air-conditioned Gage Hall--the place you'll know well from seeing it above in Maybelle's party pictures--and I'm speaking at tomorrow's service.  My title is "Embracing Human Diversity, or the Welcome Table."

I'm not yet finished with the talk, but I'm almost finished.  I thought Charlestonians might want to know.

Happy birthday, Maybelle!

Four years ago today.  We're in the NICU.  That's the smile of a woman who knows she's supposed to be happy but is scared to death.  And she's holding a very, very small person (5 1/2 pounds) who, at that point, was still named "Baby Girl Piepmeier." 

Here we are this morning. Biffle and I are looking a little more road-worn, and Maybelle is a legitimate big girl. Certainly not a baby anymore, and not even a toddler. When we showed Maybelle some of the old pictures this morning, she said, "Teeny baby."  We said, "That's you!" and she angrily replied, "No!" As the page she's reading below says, she's now a "very very very very very very very very big girl."

And here she is at school, a thoughtful person carrying her lunchbox, wearing her Marvel comics t-shirt, wearing her Really Big Girl Underwear, eager to go hang out with her friends.

If I could say something to the woman in the top picture, the woman who was thinking, "Parenthood! NICU! Down syndrome! Holy [expletive]! [Expletive expletive]!", I'd tell her to wait just a little while. This parenthood thing is tough, but it's great fun. I'd tell her she's going to be able to recite the entire Mary Poppins movie, line for line, and sing along with the Wiggles' repertoire.  She's going to learn quite a bit of sign language.  And she's going to love Maybelle more than she can imagine it's possible to love anyone.

Happy birthday, Maybelle!

Maybelle and I are back at school

Maybelle had her first day today as a Sunflower (the three year olds) at ECDC. Please keep in mind that she'll only be three until Friday, at which point she's four. Sort of hard to believe, although more and more she looks like a big kid and not like a toddler.

She had a very happy day and wore her Star Wars underwear all day long. 

I also had a good day--very few dull committee meetings, some strategic conversations with colleagues who are interested in similar things, and I'm almost ready for tomorrow's classes.

Quick response

School started for me today, and starts for Maybelle tomorrow, so I might write something substantive about those two events sometime soon.  But not right now (except to say that my two classes are going to be great fun!).  For now I have a quick response to a reader comment:

JenB said:  "In our house it is the boy clothes I worry about, I allow no commercial imagery (no Star Wars or Spiderman!) or anything that looks like it reflects admiration for war or violence. I’ll have to ask you to send me to the feminist take on those! Or maybe you’ve already written on that!"

Alas, JenB, I'm not sure that I have a feminist defense of Star Wars.  I do have six Star Wars t-shirts, and in my office I have a Star Wars poster, a Star Wars lunchbox, and Darth Tater, Princess Leia, and teeny-tiny Han Solo who are part of a posse of feminist toys.  I did write a post back in 2007 considering Star Wars as a generational dividing line between second and third wave feminists, for what that's worth, but I don't have an effective defense.

Yep, they're violent.  And we get some pretty appealing hypermasculinity on display (hello, Han Solo.  And by that I mean, Hellooooooo!).  Princess Leia is incredibly tough and effective, but with meaningful emotions, so that's a plus.  The most effective power in the universe isn't embodied in a hypermasculine way (Obi Wan and Yoda sitting on a log together, musing about the future).  But the films certainly reflect admiration for war and violence.  At some point perhaps I'll try to muster an effective defense.  At this point all I have is infatuation.

Update 8-22-12:  Good grief, I forgot to mention my very favorite Princess Leia coffee mug.  I also need to clarify that I'm only talking about the actual movies, not the recent abominations (which truly do nothing but celebrate computer generated imagery).

A bunch of pictures

It's been a busy several days around here. Biffle's family came to town, but I have no pictures from that visit because they're all on Biffle's dad's camera. Note to Jim: email them to Biffle! Then my family came--here's one moment that doesn't include Aaron and Mary, who were also in town. There's a great picture (minus Aaron and Mary) on Trey's camera. Trey, see the note above for Biffle's dad.

  

Maybelle's birthday isn't until this coming weekend (Friday, actually), but my parents got her something she's been strangely eager for: a big kid doll, unlike the baby dolls she's had. I'll do a complex feminist reading of this eventually, but let me say for now that she's named her doll Bolo (sometimes "Bolololo"), a name I really like, which she came up with entirely on her own. And Bolo is taking part in a lot of developmentally appropriate pretend play, as here, where she's enjoying some breakfast with Maybelle.

School starts tomorrow, so tonight we had our annual Women's and Gender Studies cookout at the WGS House, an event the students put on which was fantastic. The WGS Facebook page will have more pictures if you're interested in that scene, but here are Maybelle and Amber hanging out together and having a great time, while Bri cooks burgers and veggie burgers in the background.

"Spider-Man Isn't Just for Little Boys"

Here's the second in my monthly columns for Charleston's City Paper.  Two very cool people get shout-outs in the piece.  One blogs at Life V 2.0--check her out. The other just appears as "Megan," so here's a picture for those of you who are regular blog readers so that you'll know exactly who Megan is.*  She surfs every single day, she's a graduate assistant at Maybelle's preschool, and she's very supportive of Maybelle wearing a dress along with Spider-Man shoes.  And she has crafty political talents that my article will tell you about.  (And Maybelle loves her.)

Oh, perhaps this is also the place to admit that the facts in the article aren't entirely factual.  By that I mean, I have two brothers, both of whom got the chicken-like Imperial vehicles from Return of the Jedi.  They never got AT-ATs.  Trey says the biggest toy they ever got was Voltron, but I wasn't jealous of that.

*Here's another piece of information about Megan:  she really disliked the picture I previously had in this spot, so tonight we took some really good ones of her and Maybelle.  She asked that I replace the old one with this one.  She and I both like this one, and it's incredibly recent.

In case you feel you haven't seen enough of Maybelle

Megan has been taking Maybelle out in the world and photographing her. Here's Maybelle at the downtown fountain, being adorable and having a great morning on Friday.

Different sorts of moments in life

Yesterday I spent four hours--four full hours--responding to emails that had been languishing in my inbox for weeks.  I'm still not finished, but I made significant progress.  I felt both accomplished and also a sense of, "Ack!  My life is overwhelmed with technology!"

This morning I'm drinking coffee and folding laundry.  Maybelle is sitting on the living room floor with me, quietly playing with my shoes.  We're both listening to the sounds of the morning--the sounds of the towel fabric as I shake it out before folding it, the sound of George Jones purring.  It's astonishingly pleasant.

Republishing an old post as part of the Summer Disability Series Blog Hop

I'm happy to be able to take part for the second time in Meriah's cool Blog Hop series.  This is a post from Oct. 15, 2011, and it remains one of my favorites.

Reasons why feminism is a good prerequisite for having a child with Down syndrome

This week I read another memoir written by a parent of a child with Down syndrome.*  As is the case with many, many of these memoirs, the first half of the book was a story of a parent struggling with grief and sadness, with loss, with the horrible, horrible bummer of having a child with Down syndrome.  I was so disappointed.  Haven't I already read that story a billion times?  Aren't we tired of that story and ready for a new one?  And for goodness sake, can you not start the story with a chapter that's about how great things are now?  You know that new parents are picking that book up and thinking, "Oh, no--this is just as bad as I feared!"

At any rate, one of the things that struck me while I was reading is that I didn't have the same year-long struggle that many folks have to adjust to having a child with Down syndrome, and at least one component of why I didn't have to struggle that much is the fact that I was already a feminist when Maybelle came along.

So, reasons why feminism is a good prerequisite for having a child with Down syndrome:

Beauty standards:  I'm already quite skeptical of them.  I want Maybelle to have her own, unique beauty, like so many of my students do.  I want her to look funky, distinctive--not to fit into the homogenous, stereotypically girlish mode.  Please see the picture on the left for an example of Maybelle's awesome looks.  I love all the ways that she's visually distinctive.

Activism:  It's not that I want Maybelle's life to have additional challenges, but long before she was born, or even conceived, I knew that she was going to be an ethical person in a fucked up world. What this means is that I'd always envisioned her as an activist, because activism is a necessary component of ethical humanity.  So she'll have some easy targets.  And we already have tools.

Recognition of social construction:  As you're all well aware, I'm into the social construction of everything. Before Maybelle was born I already had a scaffolding in my head of societal oppressions and how they operate.  Adding one new concept into this framework--the notion that disability is socially constructed, and that these social constructions can and should be changed--wasn't a paradigm shift.  It made perfect sense almost immediately.

What this means is that it was pretty easy for me to see Down syndrome as embraceable human diversity, not a problem, a flaw, a defect, not something to freak out about or want to "solve."  It's a component of who Maybelle is, a component that's embraceable.  All the bad beliefs and energy about Down syndrome are socially constructed.

Ready-made community:  Certainly our friends and families were pretty much, "Down syndrome?  Whatever--it's Maybelle!"  But the larger feminist community--my students, for instance--only needed the tiniest bit of coaching (like I did) to see things from a feminist disability studies perspective, and now they're all over it.  They see Maybelle and there's not a bit of weirdness.

*This wasn't George Estreich's The Shape of the Eye, which I'll review here very soon.

Seizures from the inside

I figured I might as well share on the blog about an event that happened last week:  I had a seizure.  I have seizures all the time--small ones referred to as "speech arrests," and occasional big ones as I'm falling asleep.  What made last week's noteworthy was that it was big, meaning that I temporarily lost most gross motor and speech capabilities, and it happened during the day, in one of the gyms on the CofC campus.  The outstanding student running the fitness center was an EMT, so he knew immediately what was happening and helped me to sit down (I don't remember any of this--he told me the next day).  He also called the ambulance, which means that all the bigwigs on campus learned that Alison Piepmeier was taken to the hospital.

So let's talk about seizures.  They are a completely normal side-effect of brain surgery.  They are the thing that clued us in to the fact that I have a brain tumor, so I've been on anti-seizure medication since December 2010.  As my neuro-oncologist at Duke regularly reminds me, the purpose of the medication isn't to eradicate all seizures; it's to give me a good quality of life.  I've been having small seizures--mostly speech arrests--since December 2010.  Nothing is wrong--this is to be expected.  I'm just fine.

One thing seizures do is to destabilize the normal.  Things that are generally so familiar as to be completely non-noticeable suddenly appear, and are weird, distinct.  A smell reminds me of a million things I've smelled like that before, and shifts me to some unexpected emotional terrain.  I hear a sound and it evokes some sort of dream--did I have it last night?  Years ago?--and for an instant I'm catching glimpses of the dream world, a sort of dark blue around the edges.  Any sensory input can have this effect, from a raindrop hitting my arm to the taste of lukewarm coffee.

Then it becomes an issue of framing:  is this a kind of miraculous moment, where I'm experiencing the world with fresh perception, or is it a frightening destabilization?  I guess both.  Much of the familiarity of the everyday world is comforting.  It provides a predictability that's functional.  Not knowing when that familiarity is going to disappear is--well, it's just odd.  It's like I'm walking along and I have no real sense whether there will be a stable surface under my foot.  Sort of an Alice in Wonderland phenomenon.  And we all know that Alice became a celebrity because of the wildness she was exposed to.  But she didn't always seem to be having fun in the process.

I'm paying more and more attention to the seizures because I'm curious about how they work.  (Let me assure you that doctors, too, are curious.  It seems like they know very little about seizures.  I'm on a medication that works quite well for lots of people, but they don't know why.  It was apparently an accidental discovery.)  In particular, I want to understand the speech arrests:  For thirty seconds or so, I'll lose the ability to understand language or to speak it.  When it's coming on, it often feels a tiny bit like deja vu, and there's a kinesthetic component I can't quite describe.  Then if there's a person with me, that person starts reciting a script that people always recite when I'm having a speech arrest.  I can't remember it completely, but it's something about being at the bottom of the ocean, and they're saying something encouraging.  Maybe I'm supposed to follow a certain sea creature?

The point of course is that the person isn't reciting this script.  Whatever they're saying to me, my brain starts interpreting it as this script, which--like dream-language--I can't fully remember afterward.  The other morning Maybelle started reciting the script, and the non-seizing parts of my brain were well aware that she wasn't actually saying those things.

During a speech arrest I do a fairly good job of nodding, looking interested, and pretending that I'm not having a seizure.  Faking it.  Many, many people have been around me when I've been having speech arrests, and they haven't known.  The closest people in the world to me--family, best friends--have sat through them without knowing it.  In fact, only one person has identified speech arrests three separate times, and that was Catherine.  Biffle is hyper-alert, so sometimes if I'm just pausing to think through what I want to say, he asks, "Are you having one?"

I've never had one in class, or when I've been giving a public talk of any sort.  So if you're a student reading this, please don't follow Biffle's lead and assume that any thoughtful pause is a speech arrest.  It usually isn't.

Bottom line:  I'm healthy.  Nothing terrible is happening.  I don't particularly like the public nature of a big seizure at the gym, but it wasn't dangerous--just vaguely embarrassing.  It did show me what a sweet campus this is, though:  I've gotten warm, encouraging emails from lots of friends and colleagues, and the gym guy was delighted when I came in the next day to assure him I'm alright.

*Follow-up note:  I went to the gym today, eight days after the seizure, and did some biking, seizure-free.  Biffle suggested biking for the seemingly logical reason that my head won't be bouncing, sloshing my brain around enough to trigger a seizure.  As Trey said, "It makes as much sense as anything else."