Here Maybelle was at her very first fair in 2009.
You'll notice that at this fair, she was actually eating funnel cakes, which she refused to do today. She is now rejecting the food of her people.
As for 2010:
This picture captures much of what last year's fair was like for her: vaguely terrifying. Livestock? Terrifying. Elephants? Terrifying. Rides like the merry go round? Definitively terrifying.
Today we went to the 2011 Coastal Carolina Fair. We returned to our previous Charleston tradition and went to the fair with Claire, Adam, and Nina. It was a great day!
You can see from this picture that Maybelle was still terrified of all things animal, but the this year the terror wasn't as lasting. It did make us wonder, though: is Maybelle such an urban baby that the lights and sounds of the midway don't frighten her, but the quiet organic experience of being around animals does?
Because Adam, Nina, and Claire were there, Biffle and I both got to go on some adult rides. This is the first roller coaster I've been on in years, and it was such fun! I'm glad I warned Nina ahead of time that I'm a screamer, because boy, was I.
But perhaps the most exciting part was that this year, Maybelle was an enthusiastic rider on two rides: the bumblebee, and the dinosaur. She didn't like waiting in lines, but as soon as the ride started moving, Biffle said she knew what was going on, and she was having a good time.
Today really felt like an adventure. I personally love love love the fair: I love the chaos, all the different smells and sights, the weird mix of people, the rides, and most of all, the food. This is why Maybelle has gone to the fair three times in the three years that she's been alive. It was great to see her enjoy today. While the livestock were a bit much for her, she loved looking at various flags waving, she pointed out the helicopter every time it went by, and she jumped on every metal frame covering the wiring in the midway. She and Biffle watched rides going up! and down! And then she had fun on the rides. As we were walking back to our car, Biffle said to Maybelle, "We rode on the bumblebee!", and she added, "Dinosaur!"
I wondered if it would be tricky to have two groups with such different agendas and paces. Maybelle's pace was, let's just say, leisurely. But it worked out beautifully. We split into different groups a couple of different times, and then reunited for animal observations, food, and watching Maybelle on her first successful ride. And Biffle rightly noted that part of the reason the day was such fun is that Adam and Nina are incredibly easy to be around. Rest assured that not every soon-to-be-eleven-year-old is as eager to hang out with Maybelle--to hold her hand, to talk with her, to walk slowly because she's walking slowly--as Adam and Nina. They were great.
Here Maybelle was at her very first fair in 2009.
This week, a drug company called Sequenom has made their prenatal blood test, MaterniT21, available in select markets. This is the test I made reference to in a post or two over the summer: it's the test that can examine fetal DNA from a maternal blood sample. What this means is that it can provide the information that, until now, could only be gotten from amniocentesis or CVS, and these are tests that carry a risk of miscarriage.
Well, I say it can provide the information that an amnio or CVS provides. These are tests that examine fetal genetics for a wide range of things. MaterniT21 looks for one thing, and one thing only: Down syndrome.
Amber Cantrell and I have interviewed quite a few women as part of an extended research project. Those who've chosen not to have an amnio or a CVS have said this was because of the risk of miscarriage. A maternal blood test carries no risk of miscarriage, and it can be done quite a bit earlier in the pregnancy than an amniocentesis. Earlier in the pregnancy matters because 90% of people who discover through testing that their fetus has Down syndrome decide to terminate the pregnancy. If you can learn that your fetus has Down syndrome earlier in the pregnancy, abortion is safer and easier.
As you all know, I am a big advocate of reproductive rights, so this isn't a post saying that folks shouldn't have abortions. It's a post saying that I'm interested in seeing how this new technology affects our conversations about parenthood and disability. We're a culture that often lets technology--rather than thoughtful ethical conversations, for instance--take the lead. So where will this technology lead us? What will it mean for the decision-making processes of women who are pregnant? What will it mean for people, like my daughter, who have Down syndrome?
Cross-posted at Girl w/Pen.
Yesterday my students were all required to write responses to a very dense (but interesting! and important!) set of readings about gender and violence. One of my students made this mobile.
As you can see below, the shapes all had (good) quotes from the readings on them. I'm not really sure how (in an artistic sense) Martha Mahoney and Kimberle Crenshaw's essays related to a mobile, but I love having students who are willing to be creative in engaging with our course material.
And now we have more funky art for our office.
2. The quiet before the day really begins. That's what time it is right now: I check emails, cruise around my friends' blogs, read my Google alerts about prenatal testing and Down syndrome, think about things with no schedule in mind.
3. Snuggle time. These days, Maybelle really loves the first 15 minutes of the morning to be in the rocking chair. I'll get her out of bed, and she'll say, "I to rock." So we sit in the rocking chair, she snuggles up, and we rock.
4. I actually really enjoy Maybelle's musical pickiness. While we're rocking, I'm supposed to be singing to her, but she is incredibly opinionated. I'll start up with "Jelly Man Kelly," and she'll say, "No." Then I'll launch into "Bingo": "No." "Only the Good Die Young?" "No." One morning she had me sing TMBG's "James K. Polk" three times.
Maybelle is now calling out from her bedroom, so I'll go and enter into two of my favorite morning things.
I've done some of this Wii dancing and singing stuff before. Catherine and I had a solid evening of the Wii Michael Jackson game a few months ago, and it was strangely hilarious and fun. The Just Dance Kids captured that hilarity and fun for the younger crowd.
This video game allowed you to select songs, from songs that are perfectly pitched to the toddler crowd--the Wiggles' "Hot Potato"!--to those that are perfectly pitched to their moms--Toni Basil's "Hey Mickey"! For each song, there are kids dancing, and the dance moves by and large are simple and repeated. If you're actually playing the game for a score, you hold the Wii thingy as you wave your arms around, but if--like Maybelle--you're just dancing for the joy of it, you can march up to the tv, study the moves and emulate them, then turn around and emulate the other people who are dancing, and sing along with the songs you know.
Maybelle enjoyed it so much that she danced intently through "Hey, Mickey," "Happy and You Know It," "Hot Potato," and a couple of songs I didn't know that Francis picked out. I finally had to hold Maybelle for "The Macarena," but until that one came on, she was dancing completely on her own.
She had so much fun that this might be what she's getting for Christmas. She does love to dance.
Shortly after we got back home, Catherine heard Maybelle talking cheerfully to herself, so I went into her bedroom to give her the "Maybelle, it's time to go to bed!" stern speech. As I opened her door, a wave of smell washed over me. She cheerfully said, "Good morning!" to me, and I said, "We need to change your diaper."
And then I picked her up out of the bed, and realized that her back was warm and moist. And when I brought her into our bedroom, where the light was on, I saw that her little hand was brown. Something exciting had happened in bed, and she'd done some exploring
Catherine had to strip the bed, banish the stuffed animals, and confirm that the mattress cover had done its job. I had to take Maybelle to the shower--it was that bad. I scrubbed, and scrubbed again: "Let's wash your hands one more time!" Fortunately, Maybelle was very happy with the shower, and after she was cleaned, she was content to read Goodnight Moon and head to bed again where, her digestive system completely empty, she slept soundly.
I know others have far more dramatic stories than this one, but this was the most dramatic poo incident we've had in our household. I'm not sure exactly what to do with some of the animals (how do you de-poo a handmade sheep?), but we made it through, and I'm hopeful that tonight will have no exciting incidents at all.
But here is a happy post about Catherine's visit to Charleston this weekend. You can see what a good time Maybelle and Catherine consistently have together. Maybelle hasn't seen Catherine since August but immediately knew who she was and has been very happy to see her (perhaps she's also picking up on my vibe about Catherine being here).
|Hauling a happy Maybelle around the pumpkin patch|
|Swinging at the playground|
|This is just a picture that shows how damn cute Maybelle is.|
Catherine is a speech therapist, and in that professional role, she taught Maybelle the phrase "Ta dah!" today.
Yesterday I read a book called Killing the Black Body: Race, Reproduction, and the Meaning of Liberty, a scholarly study from 1997 by Dorothy Roberts. It's a book I should have read long ago, for a number of reasons. First of all, it's incredibly important and often cited. But I didn't realize that there were even more personal reasons I should have read it.
Here's how it starts:
In 1989, officials in Charleston, South Carolina, initiated a policy of arresting pregnant women whose prenatal tests revealed they were smoking crack. In some cases, a team of police tracked down expectant mothers in the city's poorest neighborhoods. In others, officers invaded the maternity ward to haul away patients in handcuffs and leg irons, hours after giving birth. One woman spent the final weeks of pregnancy detained in a dingy cell in the Charleston County Jail. When she went into labor, she was transported in chairs to the hospital, and remained shackled to the bed during the entire delivery. All but one of the four dozen women arrested for prenatal crimes in Charleston were Black.
You know that when you're reading a book called Killing the Black Body, and it starts in the place where you live, that this is a bad, bad sign.
I knew a bit about this horrifying practice, because I would talk about it in my Women's Studies classes at Vanderbilt. I'd talk about how racism affects reproductive rights, about the ways that racism and sexism intersect, and about how racism and sexism help to create policies that are actually bad for everybody. I learned a bit more about it once I came to Charleston: I learned that one of the women whose path crosses mine again and again, Susan Dunn, was one of the attorneys who helped bring this case before the US Supreme Court and get this practice to be recognized as unconstitutional.
What I didn't know until I read Roberts' book is that the Medical University of South Carolina, MUSC, enthusiastically helped to make this racist, sexist policy happen. In fact, it was their idea. This makes me sick to my stomach for a number of reasons:
- I gave birth to my daughter there. (And I have some stories from that experience that will give you a sense of how they approach patients depending on the class stereotypes they're projecting onto them. Perhaps I'll blog about some of that at some point.)
- I've had MRI after MRI there.
- Maybelle's wonderful speech therapist is there, so we visit an MUSC office once a week.
- Any other medical care Maybelle needs--like hearing and vision tests--we have performed there.
- Biffle has gotten ER care from them on multiple occasions.
- I have good friends who've completed their degrees there.
I'm going to go email my friends who work at MUSC, as well as Susan Dunn, and find out if MUSC has gone through some sort of serious soul-searching process and made amends for being part of a practice that shat upon black women and their children.
For the last couple of days, we haven't had internet at our house. Our cable modem has failed us, and despite the fact that our neighborhood is increasingly full of college students, none of them have unsecured wireless internet that we can glom onto. We're very hopeful that this will be fixed by tomorrow.
I have some posts I've been working on, and I'll probably post something in just a few minutes, since I'm at work, where there's plenty of internet. But in the meantime, enjoy this picture sent by my brother Trey, commemorating an incomprehensible--and yet brilliant and hilarious--joke by my brother Aaron. Please note the shout-out at the bottom: "Scridge one up for the Gridge." Wow, were we an odd bunch.
At any rate, one of the things that struck me while I was reading is that I didn't have the same year-long struggle that many folks have to adjust to having a child with Down syndrome, and at least one component of why I didn't have to struggle that much is the fact that I was already a feminist when Maybelle came along.
So, reasons why feminism is a good prerequisite for having a child with Down syndrome:
Beauty standards: I'm already quite skeptical of them. I want Maybelle to have her own, unique beauty, like so many of my students do. I want her to look funky, distinctive--not to fit into the homogenous, stereotypically girlish mode. Please see the picture on the left for an example of Maybelle's awesome looks. I love all the ways that she's visually distinctive.
Activism: It's not that I want Maybelle's life to have additional challenges, but long before she was born, or even conceived, I knew that she was going to be an ethical person in a fucked up world. What this means is that I'd always envisioned her as an activist, because activism is a necessary component of ethical humanity. So she'll have some easy targets. And we already have tools.
Recognition of social construction: As you're all well aware, I'm into the social construction of everything. Before Maybelle was born I already had a scaffolding in my head of societal oppressions and how they operate. Adding one new concept into this framework--the notion that disability is socially constructed, and that these social constructions can and should be changed--wasn't a paradigm shift. It made perfect sense almost immediately.
What this means is that it was pretty easy for me to see Down syndrome as embraceable human diversity, not a problem, a flaw, a defect, not something to freak out about or want to "solve." It's a component of who Maybelle is, a component that's embraceable. All the bad beliefs and energy about Down syndrome are socially constructed.
Ready-made community: Certainly our friends and families were pretty much, "Down syndrome? Whatever--it's Maybelle!" But the larger feminist community--my students, for instance--only needed the tiniest bit of coaching (like I did) to see things from a feminist disability studies perspective, and now they're all over it. They see Maybelle and there's not a bit of weirdness.
*This wasn't George Estreich's The Shape of the Eye, which I'll review here very soon.
Twenty years ago tonight, I was strolling through the University Center at Tennessee Tech with my friend Jennifer. Two guys we knew walked up, wearing very nice suits. They looked good. Jennifer already had the hots for one of the guys. The other one was a guy I'd seen on campus a lot, and been sort of curious about. Curious, but skeptical: he seemed like trouble, like a slacker, someone who played a lot of music on the patio at Tech and didn't actually go to class.
But he had an energy, a vibe, that I found intriguing. His whole presence seemed to sort of vibrate with it. He looked damn good in a suit. And he was eyeing me like, "Hey, baby."
In fact, he probably said, "Hey, baby."
They invited us to go to one of the few restaurants open in Cookeville, TN, late at night: Waffle House (of course I had no idea then what significance this restaurant would have for me twenty years later). Jennifer and I thought, What the hell. Actually, I suspect that Jennifer though, OMG, I'm going to get to hang out with Wilhelm! I know that I thought, What the hell. I've got nothing better to do tonight. And this guy is really attractive.
At the Waffle House we ordered some coffee, and the Waffle House meal I always got those days: one piece of raisin toast, and a poached egg (really? Yes, that's the kind of thing I ate back then). And then we made out. In the booth at the Waffle House. Jennifer and Wilhelm went at it, and I looked at the guy sitting beside me and thought, again, What the hell?
As it turns out, we weren't all that skilled at kissing each other. Even today, kissing isn't our strong suit. But we were very, very interested in getting to know each other better. I was the super rule following emphatically feminist good girl. He was the guy who challenged all rules on general principle and wanted to explore all the forbidden spaces. It was a terrible idea for us to get together. Really, who would have thought that this could work out?
And as of today, we've been together for twenty years.
Happy anniversary, Biffle!
Special shout-outs to:
- Amy Mecklenburg-Faenger for being an outstanding scholar who helped me accidentally discover some of the historical feminist predecessors to zines.
- Heather Trahan for having a great post-lecture conversation with me in line at the noodle shop, and in our walk back to the hotel.
- Nina Krasnoff and Cate McCann for letting me show off their fabulous informal publications to a crowd of very receptive scholars.
- Cate Bush for taking a totally last-minute picture of the publication she and I produced as girls, The North Dixien, so that I could include it in my powerpoint (damn, were we adorable).
- Kirsti Cole for putting on a great conference, inviting me to speak, and then having some of the exact same questions/frustrations with social change that I'm having right now. So we're going to keep talking.
Okay, I'm truly committed to the 31 for 21 project, but I'm finding it difficult in October--the busiest month of all time for me!--to blog every day. I like the challenge, though, because it's helping me to confront my own perfectionism. Here's a quick, non-perfect post.
When Maybelle woke up from her late nap today, she was still sort of exhausted, and also a combination of grouchy-hungry. We hadn't had a lot of time for the whole family this weekend, so we decided to celebrate the three of us being together by going to Maybelle's favorite restaurant of all time: Waffle House (or "House," as she sometimes calls it).
We didn't even put her shoes on (since Waffle House probably doesn't care that much about the "no shirt, no shoes" business). We hopped in the car, and there we were. She read the menu as she likes to do--identifying the coffee, the waffle, the eggs, the orange juice--but it seemed to make her realize just how hungry she was. She got grouchier. She got demanding. She said things like, "I want to waffle!"
And then, the server brought a fresh, hot, plate sized waffle to our table. And Maybelle raised her hands in the air and screamed with delight. "Waffle!" she said. "And syrup!" I can tell why she's so well loved in that Waffle House: how often do they get that kind of response?
She and I were ostensibly sharing the waffle, but I got only one quarter of it, and she ate the rest. And looked at me suspiciously while I ate my tiny little part.
However, it's expanding, and she's becoming a bit more experimental. Here's what happened this afternoon:
We went to visit our friends Claire, Larry, Adam, and Nina (and as a fun, unrelated side-note, when she stood at the base of the steps to their front door, she looked up, saw where we were, and clapped her hands in delight! She also said, "Boo!", as that's her favorite game with Larry.)
While we were there, Claire read the book Are You My Mother? to Maybelle. Claire is a dynamic reader, and Maybelle seemed interested, responding appropriately to the plot. The main character is a baby bird. When the book was finished, Maybelle looked at me seriously, and said,
"I want to go to bird."
She was signing as she spoke, so I'm pretty sure those are the words she said. Hmm. I want to go to bird. What does that mean? Nina brought a stuffed animal bird down from her room, but it didn't satisfy Maybelle. She looked at me and said, "I want to bird."
Claire and I tried lots of things: "You want to hear a bird? You want to read the bird book again? You want Claire to make the sound of a bird? You want to look at pictures of a bird?" Nothing seemed to be exactly what Maybelle was wanting, but Claire sent the book home with us in case we have some sort of insight.
At any rate, we're very proud of Maybelle for her growing language skills. And that's our "31 for 21" for today! (Two days in a row--doing good!)
It's rare to meet someone and immediately feel comfortable. It's rare that someone has a vibe that instantaneously puts me at ease, makes me feel chatty, makes me want to settle in and talk. And if the thing you get to settle in and talk about is feminist disability studies--what could be better?
Rosemarie Garland-Thomson has that vibe, and if you're in the Charleston area, I strongly encourage you to come out tomorrow night and hear her talk:
Today was our fourth Buddy Walk. It's amazing every year to see how much has changed in Maybelle, and in our family. I know that in past years I've written reflective posts about the changes, but this year let me share visually (you know, with lengthy captions):