Maybelle vs. The Memoir

It's not yet January, but the January issue of Skirt! magazine is now out in the world, and it has an article in it that I wrote.  The article is called "Maybelle vs. the Memoir," and I'll post a link to it here as soon as it's available.  One fun thing about this article is that it's a personal response to research I've been doing.  I hope I can do more of this in coming months and years:  write an academic response (which I can't help but have) and also a more personal, informal version of my response to the materials.

In my author's note at the end, I give this blog address.  So for those of you who are new to the blog and might be looking for posts about Maybelle (and my take on disabilities studies more broadly), here are some of my favorites, in reverse chronological order:

• "Buddy Walk 2010"
• "Is it harder to have a child with Down syndrome?"
• "Protesting the Jerry Lewis Telethon"
• "Being interviewed for a documentary"
• "Preschools, #2"
• "A post in which I write the word 'shitty'--or a variation--six times"
• "Prenatal testing and reproductive rights"
• "Sweet Maybelle"
• "Holland"

Oh, and here's a fun thing:  we got to show Maybelle her name in Skirt! this morning as we were waiting for brunch at Hominy Grill.

Have I mentioned that we love Star Wars?

My brother Trey got us all t-shirts onto which we could iron on our favorite old-school Star Wars patches.  (And by "us all," you'll notice that I don't mean Biffle, because Trey knows--as close readers of the blog should--that Biffle refuses to wear any t-shirt with something written on it).  Look how incredibly cool we all are!

Christmas morning

As a quick follow-up to yesterday's post about getting through Christmas eve, here's what this morning was like:

(If you want to see Maybelle dancing, go here.)


As I put Maybelle to bed last night, I said, "I'll see you in the morning" with an emphasis which she might not have noticed. Biffle woke me up at midnight to tell me that it was Christmas day and I wasn't in the hospital.  I was very, very happy to get Maybelle out of bed this morning, and so far we're having a good Christmas.

Christmas Eve

Well, today is Christmas Eve.  I pointed out to Biffle that making it through tonight without any emergency hospitalizations will feel to me like I'm walking through a spider web, or breaking a spell.  I will have made it through the year and into a new one, a year that's truly going to be new, starting in a different way.  He pointed out that while I'm a very reasonable, rational person, my PTSD is manifesting in some odd superstition--"Breaking a spell?" he asked.  It does feel that way.

Here was Christmas morning two years ago:


Christmas morning last year was encapsulated in this blog post that everyone in the entire universe has already read, so please don't feel like you have to go there again.

I'm nearly 100% sure that this year our Christmas morning will be more like the video above, although with a person who's far more mobile and dedicated to performing with the Biffles' collection of singing snowmen (I will try to get a video of this phenomenon sometime soon).  We're having a good day today, but I am ready to be through it, to be shaking this year off behind me and moving forward.

Hotel

It's nearly 7 a.m. in Cookeville, TN, and Biffle and I are lounging on the bed.  He's reading outloud to me from the internet, stories of how fraught brotherhood is in mythology (Cain and Abel, Romulus and Remus, etc).  We're drinking coffee.

How is this possible?  Maybelle is at my parents' house, and my parents got us a hotel room.

In a hotel!  This is the first night we've spent away from Maybelle since she was born, not counting our hospital time (which in absolutely no sense signifies as vacation time).  She is (we assume) happily playing with her Nonny, and we're just lounging.

We both woke up this morning around the time that Maybelle generally wakes up at home, so it's not that we got to sleep in, and she's on our minds.  When Biffle blew his nose first thing this morning, he thought of her, because she's delighted by the sound of nose blowing and will point to her own nose--the sound of Biffle blowing his nose is often the thing that lets Maybelle and I know that he's awake.

We'll get to see her in an hour or so.  But for now, it's a welcome change of pace to be hanging out in a hotel together.  We've had a challenging year, and we both were ready for some simple down time together.  It feels like a radically different morning.

Things I want for Maybelle

This isn't a holiday wish for her, but a general non-purchasable life wish.  I want Maybelle to experience her family as a space where she never has to worry that she'll be good enough.  As I type it, this seems like no big deal, and yet I know that many people don't have this experience as kids.  Some of my friends worried as children that things they did wouldn't be impressive enough.  They had little mini-agonies of wondering how to keep their parents' attention, how to make their parents proud.

I'm really fortunate that this wasn't my experience as a kid.  With the exception of my brief time playing softball (something at which I was very unskilled, but also--and this is the key--about which I had a terrible attitude), I knew that everything I did my parents would think was great.  This was so true that I would sort of roll my eyes at their praise, thinking, "Yeah, that's because they're my parents."  But this didn't mean that the praise was meaningless to me.  I counted on the fact that they'd legitimately enjoy the theater and dance performances I took part in.  I never doubted their enjoyment.  I just thought this was what it meant to be a parent:  you were absolutely head over heels with the stuff your kids did.  This wasn't just true for me but for Trey and Aaron, too (I'd be interested in knowing if this is their perception, but it was mine, watching my parents looking at Trey's drawings or Aaron's performances).

The thing I've realized now is that this isn't just an automatic parental response.  It's a choice, and it's important.  So it's something I'm committed to providing for her.

A few random good things

• Don't Ask, Don't Tell has finally been repealed.  One more little step that challenges the still pervasive belief that homophobia is reasonable and defensible.  It's not.
• A wonderful colleague read my Sucks blog post and brought us some chicken chili tonight.  I assured her that we're all fully functioning now, but she made extra and wanted us to have it.  Biffle's heating it up as I blog.
• I got some eggnog at the store tonight.  What's that?  The tiniest little chink in Alison's anti-holiday vibe?  Yes, perhaps.

Works like a dog

Today the Women's and Gender Studies Program at the College of Charleston awarded degrees in WGS to three students--the first three students to have a WGS degree from CofC!  That isn't what this post is about--I'll have a separate one about that at some point.  What this post is about:  while I was walking home from the graduation ceremony, I reflected on the students who've come in and out of my life, and the qualities they have that resonate with me.  Some students are sort of naturally, inherently brilliant--ideas make sense to them automatically, they don't have to agonize over revisions or scheduling, they effortlessly produce quotable quips.  Others, like me, work like dogs.

The back story:  I started taking classes in modern and jazz dance when I was in ninth grade.  By the time I got to college, the teachers at the dance studio told me that I was ready to be promoted into the accelerated classes--but to be in accelerated jazz and modern, you have to be taking ballet.  Those of you who know me personally may think to yourselves, "Hmm, Alison doesn't seem like the ballet type."  You would be right.  But I loved jazz and modern, and I wanted to be promoted, so I started taking ballet.

One day, about halfway through my first year in ballet, the teacher stopped the class.  She was a tough woman, equal parts talented and demanding, and she did not take any shit.  I really respected her. "Class," she announced, "I want you all to stop what you're doing and watch Alison Piepmeier.  Alison Piepmeier hasn't taken ballet before this year, but she works like a dog."  I remember glowing with the pleasure of that praise.  I was terrible at ballet, but everything she told me to do, I tried my hardest to do it.  Not one bit of it came naturally, but I worked like a dog.  She was offering me what I immediately recognized as an incredible compliment, and one that I think of often even in my life today.

I think this is still one of my noteworthy characteristics.  When I have a student who has that quality, the willingness to work like a dog, I feel a kind of familiarity, an attachment, and confidence.  Working like a dog won't take care of everything, but I'd argue it's far more reliable than intelligence, physical capacity, or some of the other characteristics we like to celebrate.

A happy story, although it still involves crying

Last night, when I was giving Maybelle her bath, she and I were singing Christmas carols.  I got about halfway through "Rudolph" before stopping suddenly and yelling, "Biffle!  'Rudolph the Red-Nosed Reindeer' is a song about the social construction of disability!"

He poked his head into the bathroom, eyes rolling.  "Um, yeah.  You're just figuring that out?"


Yes, I was just figuring it out--or perhaps just figuring it out in the context of my life right now.  Rudolph has a nose that's so unusual that everyone laughs at it and makes fun of it.  They've made it into a disability, a stigma, a source of shame.  Santa reframes the nose, recognizing it as an example of embraceable human diversity.  Then all the reindeer loved him.  Disability is socially constructed.  There was nothing wrong with Rudolph.

This morning Maybelle's preschool had an advent service.  The toddlers weren't performing, but all the older kids were.  The room was filled with kids and parents, and Maybelle was riveted.  She sat on Biffle's shoulders watching the kids attentively, and when they sang, she was so excited!  She clapped and cheered.  It seemed to me--and this is not just my parental bias--that she was paying more attention than many of the others in the toddler class.  It was great fun for me.  Yesterday a friend suggested I think of this year's holiday season as The Year Maybelle Was Really Old Enough To Enjoy Christmas For The First Time, and this morning I got an experience of that.

Then the kids broke into "Rudolph," and while Maybelle banged on Biffle's head in joyful accompaniment, I had to rustle around in my purse for kleenex.

Sucks

In our household, we--or, honestly, just I--have a way of describing things that aren't going so well:  "This sucks a monkey's large, hairy penis."

The good news:  I am healthy.  My brain tumor hasn't grown, and I don't have any other conditions that are life threatening.  I do recognize that this is incredibly good news, and I'm relieved and grateful.

The bad news:  the last few days have definitely sucked a monkey penis.

On Tuesday I had an MRI and an appointment with my neuro-oncologist at Duke Medical Center.  This means that Monday was spent driving to North Carolina, and grappling with the awareness that I was about to have a test that might let me know that the tumor was growing, and that my life was going to be far shorter than I want it to be.  This is true all the time, for all of us--we have no idea how much life we have left--but the MRI makes that vague, easily ignorable truth far more palpable for me.  When I got to my friends' house in Fayetteville Monday night and James asked me how I was, I burst into tears.  That was Monday.

Tuesday I managed to be in a state of anxiety that kept me from being weepy.  I was wound up, wound up, wound up.  Catherine generously came along while I had my MRI (this time the nurse didn't have to go probing around inside my arm with the IV needle, looking for the vein, so that was cool), and she sat in the waiting room with me for 90 minutes until we were called back to meet with Jim.  He was great, as usual, and the appointment was generally quite reassuring, given that the MRI showed that the tumor hasn't grown at all.  Then I drove home, the relief taking the form of exhaustion.  I was wiped out.  I got home with enough energy to spend a little while snuggling with Biffle, and then I had to go to bed.  That was Tuesday.

Wednesday afternoon at around 1:00, I was hit with an abdominal pain so sudden and so awful that I had to stagger, bent at the waist, to the door, collapse on the stairs, and say to Biffle, "I need help."  He took me to the ER at MUSC.

I find that I want to describe the pain, or its effects, but I'm going to resist that reality-TV-drama urge.  Pain is hard to communicate--it's so deeply personal--there's no way that anyone else can actually feel the pain that you're feeling.*  Indeed, they might think that you're a wimp, or that you're faking it.  I was neither.  It was bad.  I freaked the resident out so badly (she looked terrified) that she brought the attending physician to me very quickly, and the attending was incredibly matter-of-fact about pain medication.  "Your heartbeat is fine, you're not running a fever, so you get as much pain medication as you want.  There is no need for you to be in pain."  They gave me a very large dose of something very powerful (Biffle informed me that it sells for big bucks on the street), and it lowered the pain level from a 9 to a 6, I said.  When the attending heard that I was still at 6, she gave me another dose--and that fairly well knocked me out.  Which was good.

At any rate, after nine hours in the ER, they determined that I had an ovarian cyst rupture.  Totally harmless, nothing to worry about.  Claire, who coordinated with Biffle to trade off Maybelle and Alison duties, drove me home.

Today I am worn out and sore.  I have done my best to answer the emails that I haven't gotten to all week because of the medical drama that is my life.  I've canceled all my afternoon appointments.  I'm going to try to relax.  This holiday season has already felt pretty challenging to me, given that Dec. 24 is the anniversary of the seizure that revealed my brain tumor.  As of today, I'm ready for the whole season just to be over.  We've had plenty of action, thank you very much.  Now I'd just like to take it easy.

*This may sound like my own insight, but in fact it comes from a conversation with a friend who deals with a lot of pain in her life, and from Elaine Scarry's The Body in Pain.

Free To Be You and Me

There's no way to write this post so that it's not ridden with cliches, I'm afraid, so perhaps I'll summarize the initial cliches so that the main one will be more tolerable.

• Like every person my age who had vaguely hippie-ish parents, I listened to--and loved--Free To Be You and Me as a child.  I remember rocking out in my room, with my own record player.
• Once I became not only an adult but also a Women's and Gender Studies professor, I bought a CD version of the album so that I could play select bits for my classes.
• The other day I read a Bitch magazine interview with Rosey Grier, the NFL player who recorded "It's Alright to Cry" for Free To Be You and Me.  I realized that I'd never--never!  How is this possible?--played any of it for Maybelle.  She has an iPod playlist that's 200 songs long, but not one song is from FTBYAM.  I then went through a week-long process of trying to find the CD until I realized that it was in my office.
• I brought it home, and one evening when Maybelle and I were hanging out in the living room, I put on the first song, "Free To Be You and Me."

Okay, so this is where we enter into lengthier cliche terrain:  this is an album that in many ways encapsulates second wave feminist visions of parenthood and/as revolution.  In some ways it's old news, and yet it surprised me how fresh and relevant it felt as I played it for Maybelle.  Some of the lyrics of this first song are

There's a land that I see
where the children are free.
And I say it ain't far
to this land from where we are....
And you and me are free to be
you and me.

There are rivers that run free in the song, and a green country, and horses.  Potentially quite goofy, and yet the first, let's say, ten times I played the song for Maybelle, I cried.  Mind you, we also danced:  it's an excellent song with a banjo and a rock break-out at the end, and Maybelle and I are both skilled dancers (see some of the pictures from the DSAL holiday party if you doubt me). 

But the lyrics hit me at two levels.  I remembered them surprisingly well from my own childhood, a time when those lyrics seemed incredibly matter of fact and not the tiniest bit radical.  Of course I was free to be whoever I was going to be--that was a foundational assumption in my childhood.  Listening to them as a parent, though, a parent of a child who is both female and has a developmental disability, meant that I heard the radical message in a much clearer way.  My life's work is very much about creating space where people can reach their full potential, where obstacles and oppressions are removed so that they can be whoever they're meant to be.  And I desperately wish for a world where Maybelle is truly free to be herself.  We're so much closer to that world now than we were in 1972, when the album was released.  But there's still a lot of work to be done.

Birthday bike

The other day I overheard a student exclaim to a friend, "Oh, I didn't see your bike, so I figured you weren't here!"  She then reflectively referred to bikes as "our totem animals"--they sort of carry a bit of the personality, the spirit, of the folks who ride them.

Well, thanks to my parents and Biffle, I now have the perfect bike, the bike that meets all my biking needs and is an ideal kind of totem for me.  I'd hoped to have a picture of me on the bike to share, but, you know, things get busy, and a picture of that sort takes two adults and some time management which haven't happened around here.  So the picture to the left is one from the website (and yowza, this is the first time I've been to the website--I had no idea this perfect bike cost that much money!)

Back at the beginning of October, I wrote a post called "Things I Want," and one of the things I wrote about was an actual bike of my own.  I'd been riding Biffle's, and I was increasingly feeling that I needed a bike that was my bike--a bike that I could love and put stickers on, a bike that I could drive over a curb and not feel guilty about.  Lo and behold, a week or so after that post went up, a bike arrived at our house.  My parents commissioned Biffle to find and procure it for my birthday, even though my birthday wasn't until today.  So for the last two months, I've been riding around on my very cool new bike:  truly zippy, but upright, so that Maybelle's seat will fit on it.  It's got a basket, and it's brown--with a funky brown leather seat!--so it's stylish in exactly the way that works with me.

The first day I went out on it, I was walking it across campus, and two college guys said, "Whoa, that is the best bike I've ever seen."  I stopped and scrutinized them.  They didn't look like people I knew.  "Do you work at a bike shop?" I asked.  "No," they said, "we can just tell that you have a totally awesome bike."  I looked at them more closely, to see if maybe they were musicians, but they just looked too young.  "That's exactly what my husband told me people would say about my bike," I said.  I wondered, Could Biffle have paid them?  "Well," they replied with seeming sincerity, "it's a great bike!"

And it is!  So there you go.  Thanks for the birthday totem, mom and dad!

Sabbatical and the fertile void (professional musings)

We've now reached the end of fall semester, 2010, which means the end of my very first sabbatical.  The sabbatical is a semester (or a year) for faculty to do their own research and thinking, to have uninterrupted chunks of time to pursue new ideas, to follow leads and see where they go.  It's a necessary part of the scholarly life because it's providing the space that creative and analytical thinking require.


The sabbatical was a bit of a mystery to me from the beginning.  I haven't had uninterrupted chunks of time for research since probably 1999, my last semester in grad school.  What in the world would this be like?  I wasn't sure what to expect--yet even still it didn't go the way I expected.

Here's the predictable stuff:  during the semester I've read a bunch of fascinating books, most of which haven't appeared on the blog.  I'm doing feminist disability studies research, and I've read memoirs by parents of kids with disabilities, various sorts of social scientific and humanities-based research into the social construction of disability, and everything I can get my hands on about prenatal testing.  I've also identified several new favorite authors and have been tracking down all their work.  I had days when I descended into research mode and swam around there blissfully.  I've written an academic article, presented at a conference, and begun writing another article.  So this is what I expected would happen on sabbatical.

What I didn't expect was the lack of focus, the swaths of time that I'd sit in my bat cave (the office I was assigned for my sabbatical) sort of staring, thinking, "What now?"  The days that I'd come home not really sure what I'd done all day.  I'd look at one of the many stacks of books around me, and none of them would call out to me.  Or an administrative task--even an administrative honor--would come my way, and I'd think, "Oh, I really don't want to do that."

"But what," another voice in my head would ask, "do you want?"

A friend recently shared that she's in what her therapist calls "a fertile void."  The instant she said the phrase, I knew what she was talking about.  It's a space of nothingness, of not knowing, of confusion--but a potentially generative space.  That's where I am.  That's what my sabbatical has been:  a fertile void.  It's provided me with the space not to know, and--more importantly--not to have to know.  I've been lifted off the treadmill, I guess:  the tracks that my days normally follow aren't there right now, which has given me the opportunity to consider what I think about those tracks.  Are those the tracks I want to be on?

And the answer is that I'm not sure.

Here are some things I've learned:  I love thinking analytically about the world around me.  I just love it, and I can't avoid it.  It's what I would do even if I weren't an academic.  I've also learned how much I enjoy students.  The other day I hung out in the WGS office for an hour or so, and being in the physical space with students who came in and out, sharing with each other about classes and community service work they're doing, was revitalizing to me.  I thought, "Oh, I miss you all!"  I love real conversations about ideas with colleagues and friends.  I've had a number of moments of thinking, "This is why I chose this line of work," when I'm in the midst of an intense, chewy discussion with another feminist scholar.  I'm fairly certain that these sorts of conversations aren't happening as often in other lines of work--or, in fact, are things actively avoided.

I've also learned that I'm uncertain about some other aspects of my career, things that a year ago I would have had confident clarity about.  I think this is good news.  Meaningful uncertainty is often a crucial component of real choice.  It's not always comfortable, but I'm trying to relax in it, to marinate.  Knowing what and who I want to be when I grow up is a big deal, and if my sabbatical has opened up a way for me to look at my life differently, without my old assumptions driving the bus, then that's time well spent.

More thoughts on Origins

Hey, folks--I just wanted to let you know (particularly those of you who wrote long, thoughtful responses to my review of Origins) that I've posted some additional thoughts on Origins over at Girl w/Pen.  I'm talking less about the book than about the cultural pressures that surround it, pressures that your blog comments made visible to me.  Let me know what you think!

Book review: Origins

I just finished Origins:  How the Nine Months Before Birth Shape the Rest of Our Lives (Annie Murphy Paul, Free Press, 2010).  I read it because I'm doing some research and writing now on prenatal testing, and I thought this book might be relevant.

Let me preface my thoughts by saying that Trey might accuse me of having a bad attitude.  And he might be right.  So I'll try to be reasonable, but I suspect there will be quite a lot of snarkiness.

Here is my general review:  if you are pregnant, do not pick this book up.  I'm very glad I didn't read this book while I was pregnant.  I'm not pregnant, and yet reading it made me a bit antsy, because the whole book is about fetal origins.  It's about the ways in which the nine months in utero shape a person--and not only that person, but future generations of persons.  If you're exposed to certain sorts of toxins, or have certain sorts of bad experiences/feelings/thoughts, or ingest certain sorts of wrong things, your child could be affected--and then your grandchild, and great-grandchild, and so on.  For real.  You could fuck up whole generations of your family if you do the wrong thing as a pregnant woman.

Paul wrote the book while she was pregnant, so she repeatedly acknowledges that this sort of research could be used to make pregnant women (and mothers) feel guiltier and more worried than they already feel.  She notes, "It's all too easy to imagine how fetal origins research could become the basis for a whole new species of mother-blame, finding fault with mothers even before their children are born."  She was aware of the dangers--and aware in her personal experience as well as in the abstract--but she expressed hope that this research could instead be used to make the world a better place for pregnant women.

But the scientific research she cites generally focuses on the dangers, the ways in which fetuses can be and have been harmed.  So I came away from the book not feeling encouraged about changing the world, but guilty about the ways in which I might have unknowingly damaged Maybelle and future generations of Biffle-Piepmeiers.  And as a small but significant complaint, I'd like to point out that she had a lot to say about IQ.  Like, such and such behavior can lower a child's IQ.  Testing three years out shows lower IQs for babies with low birthweights, babies whose mothers had experienced high stress, babies whose mothers ate too much or too little, babies whose mothers had the wrong hairstyles.  And I get that we're all concerned about IQ; I certainly was when I was a pregnant woman, although I knew even then that IQ testing was sketchy.  Now, for perhaps obvious reasons, I'm a bit skeptical of an emphasis on IQ as a key factor that determines someone's health, well-being, and general quality of life.  Just saying.

I know that it's not Paul's job to be a scientific researcher, but some of the science she cites struck me as dubious--like the claim at the end that a C-section might be a preferable birth for a person because it doesn't cause the baby any pain (and yet the other person involved in the C-section has a significantly more difficult healing process, right?).  So, in general, I don't recommend this book.  Pregnant women should stay far, far away from it.