Tidings of comfort and joy

We've had an eventful Christmas eve. Catherine and I went walking for an hour while Trey and Olivia went on a Ralph's butter twist mission. We all ate lunch at Bobby Q's (delicious, although the location change was hard to deal with).  I ate a bunch of hush puppies (man, are they good!).

My dad, in his best curmudgeonly Christmas spirit.

Then Catherine, Trey, Olivia and I had a very quiet couple of hours drinking coffee, all of us working on various projects (really!).  And now we're at home, relaxing before I start making pies and Trey starts dealing with the giblet water.

Here's Trey's homage to the turkey whose neck is now boiling on our stove:

Christmas priorities

The other day the Washington Post presented an article about how women wear themselves out at the holidays.  While I see the accuracy of what they're saying, I read what these women were doing and thought, "Holy shit, people!  That is too much."  A billion batches of cookies, Christmas cards, extensive decorations, visiting with everybody from the past--things that often weren't fun but were part of the tradition.

I am a big believer in tradition and routine, so I understand that compulsion.  So much has changed in my life, though, that there are a lot of things I'm willing to let go of--things that it's a relief to let go of.

So here are my priorities for Christmas:

To be with my immediate family (which of course includes Catherine Bush).  To have leisurely time to connect.

Woo hoo!  Child-sized coffee set!

To watch Maybelle open presents (but not all at once, and not in the evening--she's having a much better time opening one present a day, midday.  She's excited about opening it, and she's excited about what it is.  And then she's done.)

To eat!  This morning I identified the foods that are top priority.  If the Christmas meals only consisted of these three things, I'd be delighted and satisfied.  My holiday needs would be met.
---My mom's turkey--best turkey in the world, accompanied by a gallon of gravy.
---My grandmother (Nana)'s cranberry salad--LH mercy, I could eat the whole Pyrex full.
---Pecan pie, with unnecessary but delicious whipped cream.  Real whipped cream, not from a can.

There you go.  Keep that in mind, future holiday planners.

I think that's it.  That's what would leave me feeling loved, happy, and full.

Theme for 2013

2013 has been one of the most eventful, challenging years of my life.  Some very, very difficult things throughout the year.  A couple of times I've considered whether this year was worse than the brain tumor year, and friends have said, "Good lord, if this is worse than the brain tumor, that's saying a lot!"  I've decided that this year and the brain tumor year have been equally bad--but bad in very different ways.

And yet it's been a year when I've had lots of amazing events and discoveries--for instance, I discovered that I'm surrounded by friends who aren't just "friends" but are essential sources of support, professionally and personally.  They made me laugh.  They gave me consistent and incredibly helpful feedback on my writing.  They held my hands and let me cry.  They did everything to help me move into Maybelle's and my new place, including saying "This is the place.  Live here," deciding on and hiring the moving crew, and hauling thousands of boxes.  I had to do almost nothing (except order pizza after the move was finished).  They let me tell them everything.  And they even brought Maybelle into their homes overnight when I needed space to breathe.  

So:  nothing in life is more important than this kind of friend, and this kind of family.  And here they are, filling me up.

This is my message to myself for 2013.  It's been on my laptop all year, and it's my theme, something I've said over and over, something that has helped me feel grounded, compassionate toward myself, less desperate.

We are all doing the best we can.  This resonates with me.  It feels true.  I suspect I'll carry it with me into 2014.

A fabulous mess

Maybelle's preschool has been working on gingerbread houses as a learning opportunity for a couple of weeks.  Last week all the kids in Maybelle's preschool class had to bring in the framework of their homes, made of cardboard.  We were allowed to do it any way we wanted--some parents made the whole things, while others worked with their kids.

I was very committed to this project being Maybelle's.  I'm not interested in seeing my own work.  I wanted Maybelle to be able to watch it come together due to her own efforts, and to be proud of it.  So I had the brilliant idea to have Beth, Maybelle's occupational therapist (who's worked with Maybelle since she was 18 months old) help us build the house.

Maybelle and Beth, happily constructing

Beth was amazing with her expertise.  I cut out the cardboard, and Maybelle and Beth used the "see see kay" (sticky tape) to assemble.

The "before" picture.

We live in a triplex, and our place is right in the middle.  Beth made a door and two windows (which are what's visible on the front of our place), and then she let Maybelle decide where they went.  Maybelle did a really good job, because our door is in the middle, and our windows are to the right, one on top and one on the bottom.  You can see that Maybelle was actually pretty pleased with what she did.

This week at school, parents and friends were invited to help the kids decorate their houses.  It was hard for me to explain the concept of "decorate" to Maybelle--I kept using my hands to try to explain, and she would imitate my hand motions without getting any sense of what I was trying to say.  So I told her we were going to make her gingerbread house "so cute," and she got that.

So cute.

From the very beginning I'd said that I wanted her gingerbread house to be a fabulous mess.  I wanted her to get to see her work start shaping up.  Three of Maybelle's favorite people--two friends and Uncle Trey--came to her preschool and supported her during the process (channeling Beth):  asking her what colors of gumdrops she wanted on the house, and helping her put them where she wanted them; using their hands and hers on the squeezy thing to pipe frosting onto the house; using their hands and hers to scoop big blobs of frosting and spread it wherever she wanted it.

This is a fine house.  A fabulous mess, for sure.  She was pretty pleased with it (and then she was exhausted and ready to go home).

Oh, Christmas tree, oh Christmas tree!

We're both a little sleepy.  I hadn't yet had coffee.

I don't actually know all the lyrics to "Oh, Christmas Tree," so my version typically goes like this:

Oh, Christmas tree, oh, Christmas tree!
Oh, Christmas tree, oh, Christmas tree.
Oh, Christmas tree, oh, Christmas tree,
Oh, Christmas tree, oh, Christmas tree.
Oh, Christmas tree, oh, Christmas tree!
Oh, Christmas tree, oh, Christmas tree.

It's December, so Maybelle and I have our tree.  It's exactly right for our new home:  plastic, three feet tall, with lights already installed.  You just puff out the branches, plug it in, and you're ready to go.  Maybelle was entranced when the lights came on.

I'm not particularly Christian, but I do love Christmas:  Christmas food (sugar cookies in festive shapes! Aunt Betty's coffee cake! Turkey! Pie! Peppermint mocha!), Christmas carols, and Christmas trees.  I used to be someone who demanded a real tree, both for my own home and my parents', but these days my priorities are different.  I love the festivity, and I love the fact that I get to spend more time with Maybelle without struggling with the base, the sap, the sweeping of needles.

Oh, fake, small, pre-lighted Christmas tree!

Thanksgiving, part 2

We had an excellent Thanksgiving yesterday.  During the day things were slow-paced enough that I found myself wondering, "Have I forgotten something that I'm supposed to be doing?"

Here's the food I made:

• Monkey bread (frozen rolls with a topping of instant butterscotch pudding mix, brown sugar, and butter)
• Chess bars (a base made of boxed cake mix and butter, and a topping of cream cheese, eggs, and a box of powdered sugar)
• Pecan pie (probably the best dessert ever, and I make it very well)

At Thanksgiving dinner I was asked if I'd ever eaten anything and thought, "That's too sweet!"  The answer is no.  I don't think that's ever happened.  Really.  My dad suggested that I should walk into the gathering carrying a five-pound bag of sugar, eating it with a spoon, and announce, "This is my favorite Thanksgiving food!"

My mom made cranberry salad (delicious and NOT made entirely of sugar) and cherry salad (I didn't try this due to the dirty looks my dad sent my way when there were suggestions that anyone else might eat it).

Here's Maybelle's Thanksgiving dinner:

We had a feast with two families we love.  We learned about different food preferences (for instance, Claire doesn't like gravy--I don't know how that's humanly possible), different Thanksgiving staples in different regions of the country (Conseula is from Louisiana and they have corn macaque choux, which she brought), and how many years it will be before Thanksgiving and Hannukah happen at the same time again (there was dissent in various news sources--tens of thousands of years!)

We also got to sing happy birthday to a member of the party whose birthday was on Thanksgiving.  Quite the celebration!

I won't describe how our evening ended, with certain five-year-old losing control of her bowels on the couch.  Other than that, it was a perfect Thanksgiving!

Gobble tov!

Sarah Josepha Hale and Thanksgiving

Those of you who are new to my blogging need to be introduced to the post I write every year, an homage to Sarah Josepha Hale.  It's very important that you know who she is, so keep reading.

Sarah Josepha Hale should be on a t-shirt.  If she's already on a t-shirt, someone should get that for me for a present.  Of course she's got some problems--everybody does, and when you're a feminist scholar studying folks, those problems become apparent.  But she was an incredibly influential woman in the 19th century, and it's because of her that Thanksgiving is a national holiday.

For 25 years, she wrote letters to the Presidents.  She was like, "Listen, y'all, July 4 is a great holiday, but it's the only one we've got.  You know that it would help our national unity if we had one more, at a different time of year, that has symbolic connection to the founding of our country and all that."  She said, "You know that everybody loves turkey, and people need an excuse to eat a ridiculous amount of pie.  So come on."

Because she was the editor of Godey's Ladies Book, a magazine that was so famous that it makes famous things today look puny by comparison, people paid some attention to her.  And in 1863, Abraham Lincoln was like, "Dude, that SJH has a good idea.  This Civil War's got everybody down, and pumpkin consumption is on the decline.  The sweet potato lobby has been pushing for more support.  So what the hell:  let's make Thanksgiving a national holiday, on the fourth Thursday of November every year."

And here we are:  celebrating Thanksgiving, but most of us not offering the tiniest thought to the woman who made it happen, Sarah Josepha Hale.  Just about every year I draw people's attention to her, and yet I haven't generated the kind of viral attention that SJH needs.  So tell your dining companions about her.  She got us all a day off and a patriotic opportunity to eat pecan pie (and celebrate the eugenic efforts to rid the country of its indigenous population, but we'll put that aside for the moment).

Hurray, Sarah Josepha Hale!

PS:  She's also responsible for a universally-loved children's song--she wrote it--but that fact has been forgotten as well.  Any idea what it is?  Anybody?  "Mary Had a Little Lamb."

The American Studies Association conference, 2013

Rachel, George, and me.  George and I didn't intentionally match.

I'm at the American Studies Association conference, so of course it's time for some blogging.  George Estreich, Rachel Adams, and I presented this morning.  We talked about prenatal testing, how the testing is marketed and understood, how we make sense of disability, and how we make sense of parenthood more broadly.  Then we chatted for the next hour or so over coffee--and then George and I went for lunch and kept talking.

Now I smell like hamburgers.  And, perhaps more importantly, George and I have some plans for possible co-written projects.  George is full of ideas!  As we sat down, he was like, "Okay, here are some things I've been thinking about."  And 45 minutes plus three pages of note-taking later, I said, "Yes!  I'm in!  Let's do it!"

Later in the afternoon I got to meet up with my dissertation director, Cecelia Tichi.  When my undergraduates are heading off to graduate school, I always tell them how important--crucial--it is that they have a mentor.  Then I tell them the story of Alison and Cecelia.  I took a class with her, and very early in the semester, I decided that she was IT.  The person who was going to mentor me. So I showed up at her office hours and basically informed her of this:  "Your class is my top priority.  I want to learn from you.  Anything you tell me to do, I'll do."  And I meant it, and did it.  And lo and behold, she selected me as her research assistant, her teaching assistant, her administrative assistant--I got to work with her in so many ways, and she focused on my writing and research intensely, with a level of dedication and a kind of feedback that got me Where I Am Today.

Plus, she's a scholar who writes about many different things, and I seem to be that way, too.  But perhaps she doesn't spend as much time as I do writing about Borgs and foam sperm and underwear.

We had wine, so I'm a tiny bit effusive right now.  But everything I'm saying here is true.

A new post over at The Feminist Wire

I love that I have a thoughtful new essay over at one of my favorite feminist sites, The Feminist Wire, and anybody who clicks over here from there will learn my thoughts about eating a 3/4 pound muffin for a snack.

"That Alison Piepmeier, she is so insightful!"

I'm really honored to have been chosen as one of the people to be part of a disability studies forum happening over at The Feminist Wire.  My essay is called "My Place in This Conversation."  As always, I'd love any thoughts you all have!

Important life truths

• Eating an entire 3/4 pound muffin by yourself just because you're feeling snacky mid-morning is a really bad idea.

• If you leave wet Cheerios on the floor for three or more days, they become so bonded to the wood that you have to use a strong spatula to release them.
• Your five year old child's vaguely stinky breath wafting your way while she's falling asleep is wonderful.  Seriously.
• It will be very easy for this five year old to develop more expertise with the iPad than you have.
• Fizzy water is an excellent treat to keep in the fridge (not for the five year old--for you).
• Menstruating is far, far superior to being premenstrual.
• Dora is far, far superior to South Pacific.

• If you see your holiday gift before the holidays, it's your job to forget what you saw.
• Bananas are repulsive, but they're easy to carry to work, so you should eat them.
• And finally, it's important to identify your celebration priorities.  If you've got a big party coming up, decide what matters to you.  A strong suggestion:  dessert.

Victim blaming. It keeps happening, and it is UNACCEPTABLE!

Here's my latest column in the Charleston City Paper:  "Sexual Assaults Near CofC Highlight the Problem of Victim Blaming."

Dammit, people dealing with sexual assault--can you not please start training men not to rape?

The Haley

A few weeks ago I wrote about the mysterious "haley" in Maybelle's life.  Her teachers at school had asked about the term.  I'd been hearing it around here on a regular basis.  Many of you--on the blog and on Facebook--had excellent suggestions for what she might be trying to say:  Holly?  Heavy?  Howdy?  Help me?  Hey, lady?

You were all thoughtful, generous, creative--and wrong, which I knew at the time, because she says all those words, and they're different than the word "Haley."

Here's what happened the other day:  she came downstairs first thing in the morning, and delightedly ran to the group of stuffed folks hanging out on the couch.  "Haley!" she pronounced.  "All the Haley!"  She's made similar statements since then.  "Haley upstairs," meaning that she and I need to carry the whole cohort up to her room.  "Haley here!" she cried this morning, because the dolls were on the floor rather than on the couch, and she was directing me to move them.  Or it.

I believe that Haley isn't the name of an individual doll.  Haley is the combined group of her favorite toys.  All the Haley.  They are one single entity, made up of individual parts.  You know, like the Borg*.

The Borg

The Haley

You see the similarities?  Just as the Borg say, "We are the Borg.  You will be assimilated," the Haley do the same thing (although without announcing it).  Initially it was just Lela and the girls, but now two monkeys, Dora characters, Super Grover, and even Llama Llama have been assimilated.  Other toys may well become part of the Haley.  Even I could become part of the Haley, required to sit on the couch in the morning, dance around on the floor, sing Maybelle's favorite songs, perform scenes from The Music Man and Dora episodes.

Hmmm....I think I might already be assimilated.


*It's worth noting that two different times I've connected my life to the Star Trek universe--in my non-blog writing I'm comparing reproductive decision-making to the Kobayashi Maru, and now my life is connected to the Borg.  I'm kind of disappointed that Star Trek rather than Star Wars is the world of representation I'm drawing on--but really, Star Trek has a lot more material.

Terror vs. aerobic exercise: one week on the new bike

Terror and aerobic exercise are often difficult to distinguish.  Many of the bodily reactions are identical: sweating.  Heavy breathing--needing more oxygen.  Trembling.  Stiff muscles.

Last week I thought about this as I biked to school with Maybelle on the big girl bike, since I was having such similar reactions.  Was I terrified, or was I just exhausted?  Over the week I considered some crucial differences:

• The new attachment to the bike is heavy, and Maybelle's weight is in a new place.  This is having effects that aren't related to terror:  for instance, it's difficult to start pedaling from a stoplight (and please rest assured that I stop at every red light and wait for it to turn green). 
• Because riding fast helps this bike (and any bike) to be more stable, I'm definitely riding faster.  I know this for sure because I'm zipping through lights that, in the past, I always had to stop at because of the timing:  by the time I made it through one green light, the next one in line was red. No longer the case, and I know that they haven't changed the timing of these lights.  Ergo, I am faster.  Which is making me tired.
• I'm someone who's experienced a fair amount of anxiety in my life, and it's never made my thighs sore.  As I ride the bike with Maybelle, I can feel it--really feel it--in my thighs.

So I do believe that, after one full week of riding the bike, I'm experiencing a new level of aerobic exercise in my day rather than experiencing terror.  A transition has happened.  Maybelle and I are both comfortable on the bike.  She's going to continue learning how to respond to the changes in direction and angles that are part of being a bike rider.  

And I'm going to have bigger muscles.

In case you haven't yet seen it, the video of me at inGenius

On September 25, I gave a presentation as part of the College of Charleston's inGenius event.  I had great help getting ready for the talk, as I've discussed before, and here's the video of me so you can see for yourself how it went.

Halloween through the years

Duck.  She was two months old.

Yoda, 2009.  Extremely tired.  Didn't go trick or treating.

Her second year as Yoda, 2010.  Two years old.

Witch, 2011 (along with a deviled egg, mermaid, and ghost)

Mary Poppins, 2012.

Wonder Woman, 2013

We've had an excellent Halloween this year.  One Halloween tradition has been part of her life since she was born, and that's Halloween on Huger--a great gathering at a friend's home.  We all eat real food, and then we head out into the streets that are packed with costumed kids.

Three of the six Halloweens when Maybelle's actually gone trick or treating with the gang of kids, she's very politely refused candy.  "No, thank you."  She doesn't like candy.

This is a bummer, of course, because I love Halloween candy!  As a child I was only allowed to eat two pieces a night, and these days, if Maybelle brought home candy for me, I'd eat until I was sick.  But today was a stimulating day for her:  a Halloween parade on campus, a dance class in which the kids dressed in Halloween costumes (we all know Wonder Woman is a big-time dancer), and then the party.  She had a wonderful day, saying, "Happy Halloween!" every chance she got, but by the time the bigger kids were heading out to trick or treat, Maybelle was saying, "Larry's car.  Our new home."

So Larry brought us home.

Here are the notes I took on the Halloween costumes her class was wearing today:

Girls:

• Princesses or fairies:  8
• Dorothy from the Wizard of Oz
• Super-Butterfly (a combination of Supergirl and a butterfly, made by her mother)
• Witch:  2
• Pirate
• Cat
• Minion from Despicable Me
• Wonder Woman

Boys:

• Obi Wan Kenobi
• Stormtrooper
• Captain America
• Teenage Mutant Ninja Turtle
• Iron Man
• Some other superhero I didn't recognize
• An airplane
• A skeleton

Notice some patterns?  There are more girls than boys in her class, so that skews the numbers a bit, but the boys were as drawn to superheroes as the girls were to princess/fairies.  If this were an Introduction to Women's and Gender Studies class, I'd make my students explain to me why those differences are significant.  What do they tell us about the gender roles and expectations that children are learning very, very young?  What is a superhero capable of vs. what a princess/fairy is capable of?  What do they do?

But it's nighttime, and I'm tired, so we're not going to have that analytical moment just now.  Instead, I'm going to get a bottle of water (candy-free) and curl up on the couch with In a Queer Time and Place (really?  Yes, really).

Happy Halloween!

Suspicious Alison

Head over to Amy Julia Becker's blog to read the post she invited me to write about the proposed "cure" for Down syndrome:  "My Suspicions about 'Curing' Down Syndrome."

I'm not saying no, but I'm not saying yes.

Big girl bike: Day 1

This is from yesterday.  Today I was wearing a helmet.

Maybelle and I rode to school today for the very first time on her big girl bike.  The weather was beautiful.  We kept by and large to back roads, so the traffic wasn't so bad.

Guess which one of us was scared shitless and practically vomited from fear?  Guess which one of us had hand cramps from holding onto the handle bars so fiercely?  Guess which one of us gave herself a headache from clenching her teeth so hard?

And guess which one of us happily exclaimed, "New bike!", called out "Good morning!" to strangers we passed, said "Great job, Maybelle" repeatedly, and never fussed once?

Maybelle is clearly more comfortable with transition than I am.  And good for her.

The bike is entirely safe.  We lowered the seat a bit, and I strapped her into it so tightly that she might have underarm sores.  She couldn't fall out or off, no matter what.  She could put her feet on the pedals (just barely, but she could), but she didn't have to push.  She's welcome to do so if the spirit moves her, but it doesn't affect the biking at all either way.

But the stakes were so high for me as the driver.  In a previous post about this, commenter Nan said, "Don't worry! On the ride-along you will feel every little move! Really! Trust me!"  Here's the problem:  I felt every little move!  When Maybelle would shift her weight a tiny bit, I felt it, and I had to compensate--just a bit, but enough that I felt new muscles having to operate.

When we started the three-mile ride, I was lucky if I could "go straight" by staying on the road.  When we got to Hampton Park I was able to stay within about a four-foot margin.  By the time we got to school, I was able to do my usual thing of steering an inch away from a bump on the road.  But that usual thing was hard.  My attention had to be incredibly focused.  My body had to be on on on, every single muscle and ligament and tendon and whatever else is in the human body.  Intestines!  Throat!  Spine!  Scalp!

That was day 1.  My friend said by the end of the week she'd be comfortable.  Now my hope is that by the end of the week, I am comfortable.  Wish me luck.

Maybelle's big girl bike

I'm mostly pretending to be happy here.

For her birthday, my parents got Maybelle an attachment to my bike.  She'd truly outgrown the seat that puts her in front of me, and it was time for something bigger, something that helps train her body to get even more used to the balance that a bike requires, and to the foot motions.  Maybelle's birthday was August 24, and it's now October 27, so I waited more than two months to make this change.

But it's time.  She's too big, the straps on the old seat had dry-rotted and were falling off, and she needs the next step up that will help her to become an independent bike rider one day.

So here we have it:  Maybelle on the WeeRide Co-Pilot (perhaps I shouldn't be giving a shout-out to the brand, but whatever--I'm too tired to be scrutinizing).

It's going to work, but it's somewhat terrifying.  To both me and Maybelle.  Although she's content in this picture, for most of the time we were experimentally riding around, she was screaming.  Shrieking.  Crying.  Wailing.  Really not sounding like someone who was having a good time.  The friend who was helping suggested that it feels like a carnival ride right now, but that by the end of the week Maybelle will be comfortable.

I'm curious as to how this will go for both of us, and for all the drivers on the streets of Charleston.  For this week I'm going to be taking back roads to school as much as I possibly can.  And I'm going to steel myself for three miles of intense shrieking there, and three miles back.  By the time Maybelle gets to school, she's going to be exhausted (as she is right now, at 4:45, asking repeatedly for her bath that precedes going to bed).

It's been a big week for me in the media.

My new publicity photo*

And by "big week," I mean I've shown up in the media twice.  But, hey, twice--that's pretty big for me!

I wrote--for the first time in a long time--my column for the Charleston City Paper:  "The Benefits of Being a Bitch."  Let me tell you, this piece has gotten loads of comments--on Facebook, in my email, in my real life.  It has resonated with readers in a way I wasn't expecting.  I might write my next column about how dramatic (and affirming) the comments have been.

I was also featured today as part of "Feminists We Love" at The Feminist Wire.  This was such an honor, and it was especially wonderful to be interviewed by Heather Talley, who's a scholar I've known since we were both at Vanderbilt.  Heather asked such great questions!  In this interview I talked several times about being a radical bitch--so without intending it, this has been a week when being a bitch--in the best way--has been my theme.

So let me end with a quote from Andi Zeisler and Lisa Jervis, the founders of Bitch magazine:

When it's being used as an insult, "bitch" is an epithet hurled at women who speak their minds, who have opinions and don't shy away from expressing them, and who don't sit by and smile uncomfortably if they're bothered or offended.  If being an outspoken woman means being a bitch, we'll take that as a compliment, thanks.

Hell, yeah.


*Leslie McKellar takes a fine publicity photo.  Thanks, Leslie!

Life on a bike

Maybelle and I are bike riders.  This means we go to and from school on a bike (easy).  It also means that when we get groceries, we often have to do that on a bike (challenging).  Here's a picture of our latest grocery outing:

We had to bike home really slowly so that things didn't start falling out.  Maybelle was a good sport about it.

In other biking news, Maybelle has (as you can see from the picture above) outgrown the excellent bike seat she's had since she was two.  For her birthday, my parents bought her a bike seat that looks like this:

It has a back rest and a seatbelt, so she won't be able to slide off.  How will it work for her?  I don't know.  It's supposed to help her get the feel for being an independent bike rider, and I definitely want that to be a skill she has. It doesn't require that she pedal, but she can try, and she'll also continue to have the bodily experience of how a bike works--how it turns, the kinds of balance she needs, etc.  But it's a little terrifying for me to think of riding through the streets of Charleston with her hanging out in the back.

Of course there's always this option:

I've seen a couple of these around Charleston, and fairly big kids can fit into the cargo hold.  And hey, it's only $3400! (That's sarcasm.)

I'll keep you posted.

Feminist disability studies scholar attends the NSGC

Things I've learned at the National Society of Genetic Counselors' conference:

• A lot of things that genetic counselors know goes way over my head.
• But some of the genetic counselors seem really interested in creating the "super-person" (please note the scare quotes).  Like, they advocate doing CMA (chromosomal microarray) in which you examine all of someone's genes, even though you can't tell exactly what a lot of them do.  But you warn the people whose genes you've examined that these little unexpected twizzles might be bad!  They actually said that what you tell parents is "Hope for the best but prepare for the worst."  Holy shit.
• The exhibit hall for an event like this, where there are people involved in the pharmaceutical industry, is really, really different than the exhibit hall at an academic conference--where people are involved in books.  The exhibit hall--or exhibit hell, as Stephanie Meredith and I have been calling it--is made of money.
• And while I'm highly critical of all the money, I will say that I got a massage yesterday.  In the exhibit hall.  For free.

It's glowing!  Magical sperm.

• I also got a foam sperm.  Rest assured that it will soon be on display in my office.
• All the genetic counselors are women.  All the drug reps are men.  In suits.
• I'm a huge advocate of abortion rights, but it was a little weird yesterday talking to an MD who performs abortions.  Among other things, she said, "This one couple saw that tv show with the kid with mosaicism [Life Goes On, with Chris Burke, who doesn't have mosaic Down syndrome], and they said, 'Our baby might be nearly normal!'  I said no, that's not realistic."
• I didn't let this doctor know that I have a child with Down syndrome because I wanted to hear her real, unfiltered thoughts.  And wow, were they troubling.  For instance, she was shocked that people might adopt a child with Down syndrome.  "Maybe it's a psychological thing," she said.  "They'll never have an empty nest."
• Believe it or not, she actually told me that all people with Down syndrome get Alzheimer's.  First, this isn't true.  Second, it's something I criticized in my talk on Wednesday:  do we need to be talking about Alzheimer's when a child isn't even born yet?
• When you wake up at 4 in the morning (because your body believes it's seven in the morning), here's what you get for breakfast:

Who doesn't love Nekot cookies?  Mmmmm.

• If you're doing research that relates to the profits of drug companies, they might sponsor your research:
  

This is not something that exists in my part of academia.  Not at all.  I can't even think of anything comparable.  What wealthy, wealthy corporation would want to sponsor my study of zines by girls and women?  Or of reproductive justice?  Disability as an embraceable form of human diversity?  Nobody's making obscene amounts of money from that stuff.

Finally, I've gotten to hang out with some fantastic women (many of whom I mentioned in yesterday's post).  Some of us decided yesterday that we're ready to be the radical bitches who are pushing the world of prenatal testing and disability rights forward.  We'd be clearing the way, frightening folks and getting their attention.  Others decided they'd be the calm, sweet folks following behind us and making the social change happen.

Alison at the National Society for Genetic Counselors

I'm writing you from Anaheim, where I'm happily lying in my bed in the Anaheim Hilton, relaxing after being part of a six-hour symposium for genetic counselors at the National Society for Genetic Counselors' Annual Education Conference.

Yes, that's right, a six-hour symposium:  Reaching for Common Ground:  Prenatal Genetic Counseling and Disability Equality.

GREAT picture from Judith Tsipis!

I myself wasn't presenting for six hours--only half an hour.  I was part of a fantastic panel made up of disability studies scholars like Adrienne Asch and Alexandra Minna Stern (both of whom sadly had to send videos because serious life situations prevented them from attending the conference), genetic counselors like Anne Madeo, Melissa Lenihan, Lisa R. Johnson, Dana Knutzen, and Stephanie Cohen,  activist/author/experts like Stephanie Meredith, biologists/medical doctors like Paige Church, and biologist and founder of one of the first genetic counseling graduate programs in the country, Judith Tsipis.  The fact that all these people, from all these different professional locations, were able to come together to talk about the same set of issues--well, it was really impressive.  That sort of thing is rare.

I'd like to give some public applause to Katie Stoll, who worked her ass off to make this whole event happen, and who looked incredibly calm for the whole six hours even though she was scrambling inside.  Katie is contributing to the research I'm doing for my book, and she's an amazing human being.

Katie introduced the symposium and used my definition of disability--it's an embraceable form of human diversity.  That was incredibly cool.

Here's some of what I offered in my talk.  I was going to focus a bit on some of the extensive comments on my Motherlode articles--quotes that often were shocking in their emphasis on getting rid of Down syndrome.  But what I realized as I was preparing the talk was that the comments from Motherlode are often indistinguishable from things obstetricians have said in the last 18 months to pregnant women I've interviewed, women whose prenatal tests showed that the fetus had Down syndrome.  I offered this list and asked the audience to think about which ones were from Motherlode and which were from OBs:

1. “In my opinion, the only kind, acceptable solution for the handicapped fetuses/babies is abortion at the earliest possible time.”
2. “The cheapest and easiest way of dealing with this is having an abortion.”
3. “The odds are your baby won’t be high functioning.  It’s good that you found out now.  These kids don’t do well.  A lot of them are in institutions.”
4. “You’re talking about deliberately bringing people with painful medical conditions and zero chance of a full and meaningful adult place in society into the world, and then dumping them on the taxpayers when you’re dead.”

Numbers 2 and 3 are from OBs.  Interesting, right?  Here's what I said:

So what I’m seeing are various communities of experts as well as just mainstream folks who are operating based on powerful, unexamined assumptions.  Again, I want to stress that my research isn’t based on the notion that we need to eradicate abortion, or eradicate abortion after prenatal testing—I’m happy to talk with you in more depth about my aggressive support for abortion.  But what my research is revealing is that we seem to see disability as something wrong that needs to be eradicated or cured.  And I want to suggest that it’s our job as a society to offer alternative framings of disability, because seeing it as “something wrong” is a cultural construction.

After the talk I got lots of positive feedback from folks who were open to considering this perspective, and open to considering the possibility that offering a totally blank screen, as genetic counselors do (no guidance, letting potential parents make their own decisions) is both exactly the right thing to do and troubling because it allows stereotypes to present themselves as simple "truth."

Alright, that's it for now.  I'm actually going to try to grade some student essays.  More later from Anaheim (which is kind of a butthole of a city, although the hotel is wonderful).

Fabulous new hairstyle

Isn't it time you all heard more about me and my sense of style?  (That was fairly sarcastic, but I'm still going to show you pictures of myself.)

My hair had gotten long.  Long.  Too long.  I tend to get Ouidad haircuts (they respect the curl), but they're ridiculously expensive, which means I get them done once a year.  But I couldn't wait until December to have my hair cut.  See below.

 That's some long hair.  Most of the time I was wearing it in a ponytail, just to get it out of the way.

When she was in town, my mom cut off about six inches, which is exactly what I wanted:  the perfect length!  Thank you, mom!  But in Charleston's humidity, it started to become triangular:

Maybe not the best look.  Short, but...um...I was tempted to go back to the ponytail.  So last night I pressured and pressured Claire to nuance my hair.  She was incredibly reluctant, recognizing that the stakes were high.  What if she chopped too much off?  What if I ended up with bald spots?  How long will it take those to grow out?

We looked online, though, as all wise hairstylists do, and we found a site that demonstrated how to do layering (it was on Claire's computer, so I can't offer the link here--it took us a long time to find it).  Claire felt that she could do that.

We set up a haircutting zone in her bedroom.  Claire stood behind me with the scissors.  Nina sat on the bed, examining the process.

Claire cut.  "Nope, still triangular," Nina would say.  Claire cut some more.  Nina continued to reject.

And then we got to the magic layered look:

Even Nina approved!  Not triangular!

And after washing my hair and slathering it with styling lotion/super powerful gel/whatever the hell it is I put in my hair, here's how it looks:

Fabulous, right?  A mass of gorgeous, short curls.  I am ready for my professional photo to be updated.

Now it's your turn to tell me how great I look.

My parenting priorities

Thanks to Uncle Trey for yet another great picture.

My parenting priorities don't align with everybody else's.  Obviously this can be said of anybody's parenting priorities.  But I think some of mine are a bit surprising.

For instance, I'm not all that concerned with Maybelle's neatness in eating.  At school the early interventionist and her teachers are working on--among loads of other great things--encouraging Maybelle to take small bites of her Nutrigrain bars and to chew and swallow them before taking another bite.  I get that this is a good goal.  Nobody wants to see a kid whose mouth is so full of Nutrigrain bar that squished up bits are emerging while she chews, right?  Nobody wants that.

Except I don't care.

Even my mom says I'm way more of a slob than she ever was, and I agree:  when Maybelle eats her O's and milk and milk runs down her chin, I do occasionally ask her to wipe it off, but it's not that big a deal to me.  Milk on the chin?  Whatever.  Let's clean up a bit before we go out in the world, but we don't have to clean up that much.  Right now she's sitting on the couch after having eaten two bowls of O's and milk, and I didn't even ask her to wipe her chin before she headed over there.

But she'll get milk on the couch!  Yeah, probably.  I just don't care that much.  If she were to pour a glass of milk on the couch, I would be really irritated.  If she were to pee on the couch, I'd recognize that I'd failed in parenting responsibly.  But a little bit of chin-milk?  Eh.  I do try to get her to wash her hands pretty quickly after she's finished a serving of waffles, but I don't always do a thorough job.  When Larry packed 1/3 of the entire house for the move, he commented--very nicely--that there seemed to be a little bit of syrup on almost everything.

Let's talk about how much cleanliness matters to me.  When's the last time I washed my hair?  Ummmm...probably last Saturday.  That would be a week ago.  I might wash it today, or I might wait until tomorrow (we'll see how things unfold in the day).  Maybelle gets a bath every single day, so that's something!  But I allow myself to be pretty cruddy.

Note:  Stickiness along with reading.

My priorities are different.  I've really wanted to Maybelle to be able to communicate as early as possible, so Walter and I worked hard on sign language, then singing, reading, and speaking.  She talks up a storm now, although it's often hard to understand her, so I'm working on that element of communication.

Her reading is fantastic, and that's a priority for me every single day.  She has a big dry erase board that lives beside her place at the table, and I write what her plans are for the day, and then at the end of the day what happened.  She reads those messages.  Reads them.  And then talks about them.  For instance, several times this morning she's repeated the names of the folks she's going to see.  She understands what she's reading.

And reading is helping her to speak more effectively.  She's been referring to "Mama's 'puter" for some time now.  I think that's pretty damn cute, but by writing the word "computer" on the board and pointing to the different components, I'm helping her to say "computer" in a more standard way.

This now makes me want to go off on a tangent about how arbitrary "standard" and "normal" are, and how unimportant I think they should be.  But I guess that's a bit of what I'm saying here:  the general notion of "standard" does very little for me.  There are things that matter to me, and that are fun to me, so that's what I'm focusing on with Maybelle.  Helping her learn to wash her hands?  Whatever.  Sitting on the couch and reading a book with her again and again?  A fabulous time!

So she'll be a person in the world who tells dynamic--and challenging to understand--stories, who sings lengthy songs from musicals, and who reads books on her own.  Honestly, a person not unlike many of my colleagues and best friends.

Things going on: a quick update with pictures

Maybelle and I are now celebrating the one-week anniversary in our new home.  And by "celebrating" I mean feeling completely exhausted but happy in the new space.  Maybelle fell asleep in about five minutes tonight (not the normal amount of time it takes her), and I decided to force myself to stay awake to write this post.  It's 9pm.

Here's Maybelle at the playground that's about three blocks from our new place.  It's super-nice, which means that a bunch of middle-class white people moved into this neighborhood a couple of years ago.  The city of Charleston was like, "Whoa, that nasty rusted out old swing set isn't going to be acceptable anymore."  I appreciate the playground even as I feel the need to roll my eyes when we go to it.

It's really nice.

Nonni was here this week, helping us to settle in.  Oddly, I have no pictures of her at all.  But we had a great time, and I didn't have to bike from Wednesday on because I had a chauffeur here at the house.  Mom and I cleaned out the remainder of the attic and the inside of the old place, and we continued the process of making the new place more a home.

I had my inGenius presentation on Wednesday.  Good lord, was I anxious.  I truly practiced my talk 20+ times on Tuesday and on Wednesday.  I was reciting it over and over again on Wednesday--in the bathroom, riding the bike, walking across campus.  I made my student worker listen to it at least twice, along with other students who happened to wander into the WGS office.  Two different professionals wanted to talk with me, and I made them listen to the talk first.

All that effort paid off--I remembered the whole thing!  I never had the moment of terror of "What the hell am I supposed to say next?"  And I was really happy with what I said, the images that accompanied it, and the clip from The Wrath of Khan that I included so that I could have an explanation of the Kobayashi Maru.  Truly the only thing about the talk that I feel a bit bad about what that I was ending on a high point--talking about disability as an embraceable form of human diversity, and about Maybelle not having to meet certain standards to be a viable human being.  "She is valuable just exactly as she is," I said.  During this emphatic ending to the talk, this image was supposed to be on the big screen behind me:

Unfortunately, the screen was black.  Oh, well.  I still felt great about the talk--I'll post a link to the video once it's up.

And I am so glad that the talk is over!  That much anxiety wasn't pleasant during a week in which I'd moved.

Finally, here's Maybelle just before her dance class began.

The child loves her dance classes.  Loves them so much that she continues to ask for them every single day.  "First school, then dance class."  Thursdays are big days around here.

Goodnight, folks.

Our new house

The old house, empty.

Maybelle and I have moved.  Moving is a huge transition, but it's actually been fairly easy because we've had such a fantastic group of friends helping us through the process.  Here's some of the process:

• Adam packed almost all the books.
• Adam and Trey moved all of the handmade furniture and things that belonged to Walter out to the wood studio.
• Larry spend six hours packing up the kitchen and lining all the boxes up neatly so that the moving crew would get the (mistaken) idea that I'm neat and careful about my stuff.
• Claire hired the moving crew and was in charge of the whole set-up of the new place.  She had a vision, and it turned out beautifully.
• Larry and Claire both were the "throw it away" voices of wisdom.  "Claire, do I need these files?"  "No, throw them away." "Larry, do I need these pictures of Maybelle's?" "Just save one a year.  Throw the rest away."  I got in the spirit and made an "all done" box of books as we were unpacking those:  books I've never read and never plan to.  Bye bye.

  

  Five of the eight kids who helped us.

• Cindi, Steve, Sarah, and Tom spent a few hours in the attic at the old house. Let me repeat that:  in the attic.  They pulled out 85% of the stuff up there so that I can go through it in the house without having to be in the attic.  They followed Claire's advice, and if there was stuff they felt certain should be thrown away, they said, "It just fell in the dumpster!  We don't know what happened!"
• Lily, Sam, and Brian McCann were in charge of Maybelle's room, which is beautiful.
• Lily and Frances unloaded the books (well, the 25% of them that would fit) and put them on the shelves in the living room.
• Cindi and Claire set up my bedroom.  Twice.  (They changed their minds about how it should be laid out.)
• Larry tuned up my bike.
• Claire and Cindi did the kitchen.

Maybelle in her new home

This is only telling you a bit of what happened.  I followed orders as best I could, which was wonderful:  I didn't have to make decisions.  I just did what I was told.  The house now feels like a house.  Maybelle has a new big girl bed, which she's thrilled with, but much of the rest of the place looks quite a bit like it did before.  So she and I are both settling in, feeling comfortable.

On the way home from church this morning, Maybelle said, "Go home!"  

I said, "We're going to our new house."  

"No!  Home!" she said, a reaction I've been warned will happen for a few weeks. But then she paused and said, "New home!"

Now she's watching The Wizard of Oz, eating her weight in fig bars, and apparently feeling comfortable and happy.  In our new home.

Haley

These days Maybelle has started saying "haley" a lot.  She says in a pleasant, observant way.  At first I thought it was the name of one of her classmates.

"Do you mean Holly?" I'd ask.

"Haley!" she'd say.  

"Greeley?"

"Haley!"

"Dante?"

"Haley!"

Then I noticed that she's using the word in particular contexts, like when she's carrying around Lela, the girls, the monkey, Bolo, Dora, Boots, and Swiper.

I held up one of the girls.  "Is this Haley?"

"Girl," she responded.

"What's her name?"

"Girl."

Hmmm.

In the last 24 hours, I've started wondering if "haley" in some way refers to the whole cohort of folks that she carries around.  This morning, walking down the hall with her arms full, she announced "Haley!" quite happily.  Then when she'd been on the porch with them for a while and I called her in for breakfast, she said, "Haley!", then looked at me and said, "I want help, please" so that I'd aid her in picking everybody up.

So:  what is she saying?  Is there some word that sounds like "haley" but means "bunch of folks"?  Could haley be some sort of slang term that I'm completely unaware of?  Is it a misinterpretation of a word or phrase that I say (like, "Hell, yeah"--except I so rarely say that)?

That's what this blog post is about.  I'm looking for some brainstorming, folks.  Help me figure this out.

inGenius! (yes, a title I have to live up to)

On Thursday, September 25, at 5:30pm, I'll be joining an impressive line-up of folks to talk about...you know...things in the world.

It's a great event--and an honor to be invited to speak.  Each speaker is allowed five minutes of time. Five minutes.  For a professor, that's going to require a great deal of practice, because I can take five minutes making the point that prefaces the point leading up to my main point.

Really.

So I'm practicing.  I'm going to cut extraneous stuff.  I'm going to be concise, witty, profound, and energetic.  (The energetic I can actually promise.)

The good news is that I have not only cool things to say, but gorgeous pictures of Maybelle to accompany what I'm saying.  And I will even show a 44 second clip from Wrath of Khan.  That alone is reason to attend this event.

Here's the site where you can see everyone who's presenting.  Don't y'all think it's a little unfair that I'm presenting right after Quentin Baxter plays?  Yes, it is.  Maybe I can pretend that he's warming the audience up for me.

OMG! Totes adorbs!*

Today was Maybelle's first dance class.  She's taking the Pre-K Discover Movement class at a local studio called DanceFX (which I've talked about before, and also before....).  They very wisely don't let the parents into the classroom, so I didn't get to see what happened--but I got to see her beforehand.  She was wearing a leotard and pink tights...and in general I'm not at all interested in encouraging Maybelle to fit into standard gender norms.  Not at all!

But she was damned cute in that little outfit.

She ran around the dance studio before and after the class, watching herself in the mirror, and her teacher said that she did just fine in class.  Periodically throughout the class the parents in the lobby would hear delighted laughter from the classroom.  When Maybelle came out, she said, "Dance class!  Dance class!"

It was interesting being in the lobby, waiting for Maybelle.  Perhaps this deserves its own blog post, but I'll say two things:

1. It'll be no surprise to anyone to learn that mothers were the only people there--nary a child was brought by a father, and 
2. It might be a surprise that I got to have a lengthy and interesting conversation with two neighbors, one of whom is a PhD, and one an MD.

*I don't think full-grown adults are allowed to use these words, but Trey and Catherine use them, so I'll pretend I'm quoting them.

Happy, happy birthday, Maybelle!

I have become the old person who reminisces about her daughter's birthday. The whole, "Five years ago right now, I was in the hospital, waiting to be induced!" This morning I shared this with Maybelle, and showed her lots of her baby pictures--a tradition on the morning of her birthday. She ran and got a baby doll so that we could compare that "tiny, tiny baby" with the "tiny, tiny baby" on the computer screen. She was willing to acknowledge that the baby on the screen was Maybelle, but she seemed far more interested in identifying the other folks, all the folks who love her and were holding her in gentle, affectionate ways.

LH mercy, look at this person!  Because she has Down syndrome she spent an entire unnecessary week in the NICU (this, my interviews have shown me, is not at all uncommon).  Strapped up to machines and tubes--it was tricky even holding her, but we did.  And my mom drove me to the hospital every three hours that week so that I could rearrange the tubes and breastfeed her--with lactation consultants visiting and moving my boobs around in entirely casual and non-weird ways.  Go, lactation consultants!

Then she got to come home. And who was there the night she came to our house? Claire.  (I haven't used this picture before on the blog, so I figured it was time.)

A healthy, happy baby.  It looks like she was wrapped in a dishtowel, which would have been the right size.

Today she's huge!  People keep commenting on how tall she is, and they're right--a lot of five-year-old clothes are too small for her.  Long legs.  She got those from me.

She's a person who now routinely goes through my closet and pulls out my t-shirts to wear, which is why, in the video below, she's wearing a shirt so big that it's falling off her shoulders.


Birthday from Maybelle on Vimeo.

We've had an excellent birthday.  A house full of friends this morning, five boxes of cinnamon rolls from Wildflour (that's right, five boxes), and kids running around, screaming, and hitting each other with balloons until they were all completely sweaty.  At one point Maybelle took all six of her dolls (Lela, girl, girl, girl, girl, and Dora) and got in bed.  She needed a little down time.

My baby is five!  Happy birthday, Maybelle!

Alison and her big hair on HuffPost Live

I was just interviewed on HuffPost Live as an expert on prenatal testing and Down syndrome, and as a parent of a child with Down syndrome.  Fabulous experts Brian Skotko and Stephanie Meredith were also being interviewed (and is it fair for me to claim credit since I suggested that both of them be included?).

"Counseling for Prenatal Testing" = the link.

My only complaint was that at the end the only person called "Dr." was Brian.  Let's all remember that I, too, am a Dr!

On the advice of several colleagues, I wore my hair down.  My Nashville friend Jay just wrote on Facebook, "Awesome, just caught the end live. Way to go! And your hair was representing."

I'm going to assume that's a compliment.