Unitarian Easter: All of the fun, none of the Jesus

Well, there was a bit of Jesus in church this morning, which sort of surprised me, but it was the Unitarian version, the "isn't it ironic that so many contradictory claims are made using this one narrative as the explanation?"

I realized I was going to type something like, "I'm not much into the Christian thing," but that's squishy.  Let me be clear:  I'm not Christian.  It was funny this morning during the children's story--the minister was showing the kids different pictures of Jesus, none of which Maybelle was familiar with. She turned around, pointed to my shirt, and whispered "Princess Leia."  I gotta say, Leia's a bit more of a celebrated figure around this house.

At any rate, we got to have all the fun of the Easter holiday yesterday and today.  Last night Trey and I dyed eggs, and this morning Maybelle put stickers on them.

She picked the stickers--monkeys, ladybugs, basketballs, flowers.  You may notice that the egg on the bottom right, with a basketball sticker on it, is crushed.  This is because I made the mistake of handing it to Maybelle yesterday, and it turns out you can very easily crush a boiled egg in your fist.  Which she did.

Then at church this morning there was an Easter egg hunt.  Maybelle's taken part in this for the last two years, but this was the first year she actually cared.

She gathered a bunch of eggs, and then she examined (from afar) the three goats who were there, and she gave a quick pat to one rabbit.

And here's how you do it up at Easter: they had a chocolate fountain, and a plate of Rice Krispie squares on sticks that you could hold under the cascading chocolate. Maybelle wasn't interested, but I was.

That's a good Easter.

Duke Feminist Theory Workshop 2013, part 2

In a Facebook comment about my previous blog post, my friend Christie wrote,

I thought partway through that you were headed toward the problem that (based on the excerpts) the conversations weren't conversations. They were posturing. They were not efforts to communicate ideas or understanding from one professional to another, and certainly not from professional to student. They were designed to do what they did - stump their listeners. When I hear "workshop," I realize, I'm coming from my limited experience of writing or therapy workshops where people bring drafts and take in feedback to make what they're working on more useful, more honest, or more beautiful. But what were communicated by speakers - it seems - were not works open to feedback; instead, they were presented in ways that few would dare to engage at all for fear of sounding stupid.

I absolutely felt that a lot of posturing was going on, and when I talked with the graduate student who had teared up behind me, I told her how much posturing I did in grad school--pretending to understand inside jokes and side references that left me baffled, but I felt I had to pretend I knew what was being said, because everybody else understood!  I didn't recognize that many of them, too, were posturing.

But I actually don't think that the presenters at this workshop were posturing--at least not consciously.  I think this is the world of discourse in which they exist, so what they were saying seemed--to them--completely obvious.  This was one of the most interesting things to me about the workshop, because I suspect that I do this, as well.  I have ways of talking, ideas I'm so familiar with that I don't realize that not everybody in the world talks the way I do.  Not everybody in the world immediately starts examining how things are socially constructed.  Not everybody in the world understands that we have to examine systems of power, not just individual decisions.

I love it when a student in my class asks a question, prefacing it with, "Okay, this is probably a stupid question, but...", because "stupid questions" are almost always incredibly helpful.  To me, to other students, to the whole conversation.  If students give me this kind of real questioning, then I understand where I'm making sense and where I'm talking only to a very limited population who's read the same stuff I've read.  I really hope I can create classroom environments where students aren't afraid of sounding stupid.

And one other conference experience:

As I was listening to folks discussing Big Ideas in ways that I didn't necessarily follow, Megan (Maybelle's babysitter) and I exchanged the following text messages:

Megan:  Your daughter just farted then ran around yelling "fart!"  It was really funny!  And bonus it wasn't stinky. 

Alison:  She loves farts!  If you fart she'll be impressed. 

Megan:  I've got nothing. 

Alison:  You can always do a face fart.  Ask Maybelle and she'll demonstrate.

That's the work/life balance, right there.  I like to have a life that can contain both dense feminist theory and the joys of farting.

Duke Feminist Theory Workshop 2013

I spent the weekend in a room full of feminist theorists at the 2013 Duke Feminist Theory Workshop.  A story that tells a bit about what the experience was like for me:

During the very last session (a hundred people in a small academic auditorium), a graduate student, sitting right behind me, made a comment.  She noted that the "precarity" (precariousness) that people had been discussing related somewhat to her experience, a student in a room full of faculty with jobs and books, feeling that she needed to have read everything written by the people she encountered, wondering if she'd get a job.

Toward the end of speaking, she began to tear up.  The conversation moved on, but as she sat down she took her classes off because she was crying.  So I wrote her a note and passed it back.

Thanks for saying that and for sharing your personal experience.  Grad school is brutal.   

--Alison

When the session ended, I stood up and touched base with her.  I told her that if I had attended this workshop as a graduate student, it would have been a nightmare.  I said, "I would have spent the whole time despairing because everybody in here is smarter than I am.  And most of the people in here actually are way smarter than I am!  But it doesn't matter, because I have a job, I have tenure, I've written several books.  I had to keep reminding myself of that this weekend."

This workshop really was about theory.  It consisted of keynote addresses, all of which had some very interesting material, and all of which consisted of some stuff I simply didn't understand.  For instance:

List of things I didn't understand

• “Obviously a word I’m taking from Heidegger…” 
• “Here we can hear Spinoza, who of course we have been hearing all along.” 
• “I’m resisting a hermeneutical foreclosure.” 
• “I’m not just potentiating.” 
• “I hear you trying to re-partition sensibility.” 
• “Necro-political concepts”
• “She’s doing a great suturing of flows that are circulating…” (Okay, this one I understood, but I just thought we'd gotten to some point of ridiculousness in rhetoric.)

They also made reference to concepts I'd heard of but didn't (sometimes still don't) understand:  the importance of affect (this one I think I get now), biopolitics (from Foucault, but I have no idea), assemblage theory, and Eve Sedgwick's discussion of the "hermeneutics of suspicion," "paranoid reading," and "reparative reading."

I shared some of my notes with my friend Catherine, who'd alerted me to the fact that this workshop exists.  "You're so efficient!" she said.  I told her that no, this wasn't efficiency--it was defensive snarkiness.  I wrote these quotes so that I could share them with my writing group, so I could say to Claire and Conseula, "Can you believe they said that?"

Snark is the wrong response, though.  Catherine framed the event well:  "I don't have time for expertise in feminist theory.  This workshop gives me some basic info I can take home."

It was useful for me to be here, because I see that theory isn't what I do or want to do.  Many parts of the workshop were interesting--even relevant to my work--but ultimately the conversations weren't conversations I wanted to have.  I got tired of them.  At dinner I sat next to a grad student from Iceland who is going to be the first scholar in her entire country to study queer fiction.  Pretty cool.  She and I were sharing thoughts about the workshop, and she said,

"I'm someone who uses tools.  And I feel that I've come to a workshop with people who make tools.  So they've spent all weekend talking about all the different tools and how you make them.  I don't need to know how to make them, because that's not what I do.  I just need a tool or two to use."

I thought that captured my experience perfectly.  I could, in fact, learn how to make them if I paid enough attention, devoted enough time, looked up all the words I didn't quite get, read everything in their footnotes and bibliographies.  But I don't want to do that.  And because I'm not in graduate school, I get to make that choice.

One of the themes of the conference seemed to be "living otherwise" and "thinking otherwise," a theme that suggested a desire for social change and an effort for the work of the scholars presenting to be part of that change-making. But when we started talking about that sort of thing, about change, about "activism" (a word I was actually wary of using because folks seemed so skeptical of it), they seemed not to want to believe it was possible.  The sense I got was that, because I'm a scholar whose work is intimately linked with a desire for social change, I'm naive.  I understood their resistance to a happy ending:  they were writing about incredibly vulnerable people, people existing in a world defined in large part by various kinds of oppression.  The privileged person reading the academic book wants a happy ending, because then that reader is off the hook.  So they resisted that, and I get that and respect it.

But it seemed even larger--that they were skeptical of the notion of social change at all.  And I thought, "Then why are you doing the work you're doing?  Why get up in the morning?"

One of the presenters, Beth Povinelli, said that this was actually one of the questions central to her work:  How do people get up day after day to do work even when they know they're probably going to lose, just as they've lost 100,000 times before?  She said that she felt it wasn't things like "We know we're going to succeed this time!"  It was more subtle things, like laughter.  If you have friends who make you laugh, you'll get up to work to be with them.  A woman in the audience said that she's interviewing activists on the street for her work, and those activists talk about faith and joy as what motivates them (and little happy confetti started poofing out around me because faith and joy are THE VERY THINGS I'm talking about in my chapter on activists).  She commented that she'd heard us talk very little this weekend about either of those things.

So:  a interesting weekend.  I'll have more to say.  I did a series of musings about disability studies and how it was not present in an overt way, but people kept talking about disability (and talking about things that seemed to make disability impossible).

Let me just end for now by saying I had the experience of being a student, and I have a much clearer understanding now of how my students feel when they read the things I've given them and those things just don't make sense.  I recognize how important it is to make my classrooms spaces where people can ask any question, even the most foolish, because that's what will make the conversation useful for everybody.

World Down Syndrome Day

I'm typically skeptical of "months" and "days" that are designated for certain purposes, but I'm going to blog.  Today is World Down Syndrome Day (March 21 = 3/21 = trisomy 21 = Down syndrome), and Meriah Nichols over at With a Little Moxie came up with a good (and easy) theme for a blog hop:  one fact, one fallacy, and one photo.

FACT:  Parenting is hard as hell.  What's hard are things like this:

• Trying to get a four-year-old to take a full teaspoon of wretched, wretched Augmentin twice a day.  (Tip:  mix it into about a quarter cup of pureed strawberry jam.  She still hates it, but with repeated high-fives and praise for being such a big girl who swallows her medicine, she chokes most of it down.)
• Turning off the tv.  Maybelle often feels that this is an outrage that devastates every ounce of her being.  There are tears.  There's negotiation:  "TV on!  One more Dora!"  Fortunately, she usually moves on from this outraged devastation within a few minutes.
• "Oh, God.  I poop in the bath."

FALLACY: Parenting a child with Down syndrome is so much harder than parenting a typical kid.  Maybelle's my only child, so I can't speak for everybody, but it seems to me that most of the hard stuff about parenting Maybelle is stuff that's difficult for all parents.  Nobody likes cleaning poop out of the bathtub, and it did take Maybelle a bit longer to learn to use the potty than many of her peers, but it didn't take her that much longer.  Being Maybelle's mother isn't qualitatively different than being the mother to any other unique person in the world.

I'm interviewing parents for my book A Choice with No Story:  What Prenatal Testing and Down Syndrome Reveal About Our Reproductive Decision-Making, and one dad said, "the hardest part about being a parent isn’t her diagnosis or medical condition or cognitive delays or what have you, it's really about dealing with acceptance in society."  I agree with that:  Maybelle's differences are simply differences.  It's societal stigma that frames those differences as "problems," and that stigma creates problems for me as her mother.

PHOTO: How cute is this?

Trip to Washington, DC

This weekend Maybelle and I went to visit Eliza and her family in Washington, DC.  It's a trip I make regularly, but it had been a long time since I'd traveled alone with Maybelle.  I flew to Tennessee with her two summers ago, and when she was a tiny Bjorn-sized infant, I took a couple of flights with her (those were really easy), but I didn't know how the traveling together would go.

It went great.  Maybelle is an outstanding traveler.  She was eager to go to the airport, she loved wearing her backpack, she thought the plane was exciting, and during the entire flight she played with Lela and the girls, read books, and sang songs with me.  On our first flight we were all boarded when they discovered something that had to be fixed.  It meant we sat there on the vaguely stuffy, hot plane for thirty extra minutes, but it made no difference to Maybelle.  She was a great sport.

I've been visiting Eliza in DC for a dozen years now, and I'm not sure that we've ever done standard touristy things.  But this time, the weather was cold and windy, and also this time Maybelle was a full-fledged kid--so Eliza suggested we try the Museum of American History.

The Smithsonian museums are amazing.  They not only have some of the best stuff in the world on display, but they're also completely free.  Which means anybody gets to go there.  It also means that the stakes are incredibly low with kids.  If Maybelle decided that the museum was the worst thing she'd ever experienced and lay on the floor screaming, we'd happily move on to something else--we wouldn't feel like, "We've spent $60 to get us all in, so we're staying, dammit!"

Maybelle loved the museum. The whole building she thought was great--we entered the lobby, and she was fascinated--not so much by the exhibits as by the great big room full of space for dancing.  Then we turned into the transportation exhibit, thinking she'd like to see trains and surreys with the fringe on top--things like that.  Those were fine, but what really fascinated her were the statues of people.

She assessed their situation and talked to them.  "Good morning!" she said to this guy.

She was a little concerned about this woman, whose name I don't remember.  She looks stern because she was an African American woman waiting to board a train where she's likely going to be harassed or worse.  She's well dressed, and her self-presentation is letting everyone know that she is respectable and therefore should be treated as a human being (this is called the politics of respectability, as my capstone students know).  But at any rate, Maybelle wanted her to feel better.*

And then there was a little nook in the transportation section where a guy was trying to sell a car to a couple.  It represented the 1950s, and there was some 1950s car of some sort on display.  Truly not that exciting, as far as Eliza and I could see, because who the hell wants to spend time examining a fake car sale?

Maybelle.

She examined these three statues in great detail.  She touched their fingers and their shoes.  The woman--who was pregnant--got a lot of attention.  Her hair, the bow around her neck, her whole body. Maybelle isn't allowed to examine actual living adults with this level of scrutiny, but with the statues, she could explore, and she did.  She explored not only their bodies but the ways in which they were interacting.

Eliza is an amazing photographer.  She took all the photos I'm sharing here (except the very first, which I took with my phone), and I am so happy that she caught this moment so perfectly.  Check out Maybelle, joining the interaction, imitating the car salesman's body posturing exactly, not only his hands but his facial expression.

Eliza did note that we were probably the only people in the history of this exhibit to spend this much time with the car sale display.  But it was great!  Maybelle had a wonderful time, and Eliza and I got to talk and talk.  We were in the transportation exhibit for probably two hours, and we only left because Eliza and I got hungry (and got Indian food!  Mmmmm.)

The rest of the trip was great, too--lots of hot tea and conversation, some time on playgrounds, some waffles.  And I know that when Maybelle and I return to DC, we'll be checking out more Smithsonian museums.


*I'm very tempted to go off on a tangent about how Maybelle herself is going to have to navigate the politics of respectability as a person with a visible intellectual disability.  But I'll save that for later.  She wasn't thinking about that at the museum, even though I was.

Women's History Month

Over at From the Square, NYU Press's blog, I share some of my grouchy thoughts about Women's History Month.  Check it out.

The Yiddish Policemen's Union

I'm interested in your feedback here.  I just finished reading The Yiddish Policemen's Union (2007), an excellent book by Michael Chabon.  I've heard loads of good things about it, recommendations over the years from lots of different folks, and finally Trey brought it over to my house and left it here.  So I read it.

Here's the thing:  it seems to me that one of the central thematic elements of the whole book is the fact that the main character and his (then) wife terminated a pregnancy when they learned that the fetus had a chromosomal difference.  The book isn't "about" this at all, but it comes up repeatedly, in significant moments. Of course I noticed this--my eyes pricked up at the very first mention of Django, the fetus who is described as having "an extra chromosome on the twentieth pair.... It might cause grave abnormalities.  It might have no effect at all.  In the available literature, a faithful person could find encouragement, and a faithless one ample reason to despond" (14-15).

I'm not sure if Chabon meant this extra chromosome to be understood as Down syndrome--Down syndrome is an extra chromosome on the 21st pair, and a trisomy on the 20th pair is a different condition.  But given how familiar Down syndrome is, and given that most prenatal testing is performed to detect Down syndrome in particular, I know I'm not wrong to see a connection.*

I don't think I'm offering any spoilers if I say that as the book is coming to its dramatic conclusion, one of the things Landsman--the protagonist--ponders is Zugzwang: being forced to move when there are "no good moves" (400).  Being forced to make a decision when there are no good options.  My political theory friend Claire has informed me that this is called Hobson's choice.  My brother with expertise in Star Trek has informed me that this is called Kobayashi Maru.  Any good Southerner would tell me this is called "damned if you do, damned if you don't."

And this idea seems to be at the crux of many of the interviews I've had with parents of children with Down syndrome who are remembering their decision-making process:  to terminate the pregnancy or not?  It's certainly at the crux of conversations I've had with women who've terminated their pregnancies because the fetus was identified as having Down syndrome, the sense that there are no good options.

Bina, Landsman's ex-wife, articulates this quite well in the next to last page of the book.  She says,

We did what seemed right at the time, Meyer.  We had a few facts.  We knew our limitations.  And we called that a choice.  But we didn't have any choice.  All we had was, I don't know, three lousy facts and a boundary map of our own limitations.  The things we knew we couldn't handle" (410).

So, three things.  1)  "We called that a choice."  I think this phrasing is quite wonderful, given how critical I've become in the last several months (years?) of the language of "choice."  We like to pretend that things are choices when they're really people struggling to do the best they can with limited options, information, and support.  "A boundary map of our own limitations."

2) I find that I'm struck by the importance this book places on this sort of troubling life decision--reproductive decision-making that centers on an intellectual disability--and the fact that I haven't heard anybody talk about that aspect of the book.

3) I'm interested now in collecting additional ways that people attempt to label these kinds of impossible "choices."  What's the rhetoric we use--academic, colloquial, etc?


*It may well be that Chabon is making reference here to the trisomy he and Ayelet Waldman's fetus was identified as having, a genetic condition for which they terminated the pregnancy.  Waldman writes about this process in her book Bad Mother.

A quick post about words

Lawrence Downes wrote a solid piece in today's New York Times about the campaign to get rid of the word "retarded."  He recognizes that there are plenty of folks who think there's nothing wrong with the word "retarded" (some of those folks are doctors, and others are people writing books, even books that address intellectual disability).  But then he makes the most important point:

In this, as in other cases of discrimination, it’s probably best to let those affected speak for themselves.

Yep.  If a person is in a group that's marginalized and oppressed, and if that group tells you that a word is derogatory, hurtful, stigmatizing, and contributes to a culture that identifies this group as less than human, then thoughtful individuals should pay attention to what that group says.  It doesn't matter if someone in the privileged group is like, "Well, I didn't mean it that way!"  Doesn't matter what you meant.  What matters is the effect the word has, and the people who can tell you about those effects are folks affected by it.  Once you've been told, then your job is to change the way you speak.

As my friend George Estreich notes, "Any word can be repurposed for contempt."  It's not like eradicating the word "retarded" from our casual speech is going to eradicate all hateful speech aimed at people with intellectual disabilities for all time.  But it's a step in the right direction.  And when thoughtful people do change their speech, they have the opportunity to see how that changes their thinking.  The challenge of saying "a person with an intellectual disability" might help you recognize in some small way that you're talking about a person who happens to have an intellectual disability.

And, hey, the challenge of coming up with an insult that doesn't harm people with intellectual disabilities will force you to be more precise in your insulting language, and that can lead to creativity.  You can always use the Kelly Piepmeier classic, "You're about as innocent as a toadstool!"

Singing with Maybelle

It was time for a video of Maybelle.  She's been sick for the last two full weeks, but yesterday she was feeling upbeat enough that, as we were lying in bed together after her nap, we sang some songs.  I thought about adding captions, but since she and I are mostly singing together, I think you can understand her.

She can see herself singing in the phone, so this partly explains her faces.


Singing in bed from Maybelle on Vimeo.