This morning at the horse farm

This morning, Maybelle and I got to go with Nina and Claire to Nina's horseback riding lesson at Charleston Area Therapeutic Riding.

Here's what the morning was like for Nina:


And here's what it was like for Maybelle:


I highly recommend this as a Saturday morning activity. It was cool and sunny this morning, and the farm is a big open area where Maybelle could run around, climb on things, and sing herself a variety of songs while Claire and I visited. And what is more fun than a morning with Claire, Nina, and Maybelle? It was a particularly perfect morning for me, for a variety of reasons:

• Horseback riding is a very gendered activity. One of my best friends writes about horses, and one of the things she's often noted is how much girls and women love horses. I don't particularly love horses, but I'm fascinated about why so many girls and women do.
• I know that CATR deals with mostly female clients because I got to visit with the Director of Community Lessons, Shayla, who's a WGS alum. She mentioned that the last time she saw Maybelle was when Shayla was in my Gender and Violence class in 2009. This, as you may remember, was the class that met for three hours one night a week. Because Maybelle wouldn't get any sustenance from anywhere other than my body, Biffle had to bring her to class every week so that she could breastfeed. Several times I was making pronouncements about violence while one arm was wrapped around a little nursing body, covered with a blanket. That was a weird, weird experience, y'all.
• You may have noticed that the name of the place is Charleston Area Therapeutic Riding. They deal with typical clients, like Nina, but they also do riding as a therapeutic activity for kids with disabilities. So Maybelle might end up doing some therapeutic riding down the line. If she becomes less terrified of horses.

I will say that Maybelle overcame some of her terror this morning. Shayla helped us to introduce her to Blackjack, the horse Nina trains on, in a way that made Maybelle do something other than cling to my body, adamantly repeating, "No bee-tou! No bee-tou" (no thank you). She did end up petting Blackjack. So maybe someday she'll be a rider.

Here's one more of Nina:

Good things in my world

I'm in the mood for a quick morning post about things I'm happy about.

• Early Childhood Development Center (ECDC):  I work at a school that not only has a great Women's and Gender Studies Program and one of the best college programs in the nation for students with intellectual disabilities, but it also has a preschool that's about as good as I could imagine a preschool being.  In fact, I think it's probably better than I could imagine.  And Maybelle gets to go there.  She loves it, and she comes home knowing things that Biffle and I haven't taught her.  Recent examples:  Biffle and I have worked on counting from 1-10 with her, but now she's pretty good at counting up to 20.  She's learned to kick a ball and ride in a tire swing.  She also says, "Ready, set, GO!"
• The first cup of coffee:  I do love the first cup of coffee in the morning.  These days I'm doing some mindfulness meditation, and one of the things the mindfulness folks are big on is being in the moment.  So for the last few days I've been consciously savoring the first sip:  feeling the warm cup in my hands, smelling the coffee, letting the drink be a real experience.  I've switched to decaf in the last couple of weeks, but it doesn't matter--that first cup is still a great part of the day.
• Riding the bike:  Biffle and I were wise enough to buy a house downtown, so almost every day I get to ride my bike to school, and almost every morning Maybelle is with me.  We get to breathe in the air, notice the world around us, and feel alive in a way that a car just doesn't promote.  Plus, I never have to search for a parking spot.  I ride up to the door of my office and get off my bike.  That's it.  Fantastic.

Maybelle and the roller derby

Tonight we went to see the Lowcountry Highrollers, Charleston's roller derby league.  This was the first time I've ever been to a roller derby bout, despite the fact that I've been interviewed numerous times about the significance of roller derby.

More importantly, it was the first time Maybelle has been to any sporting event since she's been out of the uterus (we did go to a minor league baseball game when I was visibly pregnant with Maybelle, and I got free boiled peanuts).  Here's what she was like tonight:



Maybelle:  sports fan!

I find it's surprisingly moving to encounter something new like this with Maybelle, particularly when it's something she has such a dramatic, positive reaction to. Roller derby is cool for many reasons, but some of them were quite visible to me tonight:  it's a sport consisting of all women, women who are fast and tough.  Because of this, the stadium was filled with girls--boys, too, but more girls than I expect to see at a sporting event.

At halftime, all the kids were invited to the track to run around, and it was great to see so many kids, from the age of one up, running and running and laughing.  There didn't seem to be any weird gender dynamics.  Preteen girls ran with groups of their friends, weaving in and out of toddlers and grade school kids, and all of them seemed to be having such fun.

After we left, we asked Maybelle, "What did we just see?", and she said, "Go go go!"  We're teaching her to say "roller derby," because I'm sure we'll be back.

Ear plugs are amazing

As many of you know, I'm a person who's prone to anxiety.  The last several weeks have been filled with a higher-than-average level of anxiety for me--and that's saying a lot.  I think that this is at least in part because I've just passed through two pretty significant anniversaries:  the anniversary of the diagnosis of the brain tumor (which happened Dec. 24, 2009) and the anniversary of the surgery itself (which, thanks to Catherine, I now know was yesterday--Feb. 12, 2010).

Hurray that two solid years have passed since the surgery.  And perhaps an even bigger hurray that the anniversary itself has passed, because I think my body in some primordial way had identified the slant of the sun, the season, whatever, and knew that some bad stuff went down at this time a couple of years back, so it has gone into alert mode.

Part of that primordial warning system has meant that, as I told my friend Meg, "Every single sound in the city of Charleston wakes me up, from the gentle squeak of Biffle's nose to the trains past East Bay."  I have not been sleeping well.  Then yesterday I had the good fortune to be having brunch with another friend, Marguerite, who mentioned how much she relies on her ear plugs for good sleeping.  She says she buys the mega-pack from the Rite Aid.

"Hmmm," thought I, "perhaps this would work."

Maybelle and I made a trip to the Rite Aid yesterday afternoon and with hopeful good will bought a mega-pack.  I used them last night.  I couldn't hear a thing.  Not the clickety-clickety of Gabe trotting through the house at night, not Maybelle's sigh as she rolls over in her sleep, not Biffle's footsteps as he quietly comes home from a gig.  Nothing.  I slept seven hours and twenty minutes, friends.  That is a big deal for me these days.  I mean, I woke up a few times, but I was able to go right back to sleep.

Perhaps we've turned a corner.

Alison's complaints about memoirs, written in a scholarly way

You all know I have complaints about the way many memoirs are written.  I wrote a friendly version of these complaints in a piece for Skirt! magazine a while back ("Maybelle vs. the Memoir").  At the same time that I wrote that article, I wrote a scholarly piece critiquing memoirs written by parents of children with disabilities.  Because academic publishing is a slow business, my article has just now been published.  It's in a journal called Disability Studies Quarterly, which is the big U.S. journal for disability studies scholarship.  I'm thrilled to be part of that community now!

If you want to read my essay, it's called "Saints, Sages, and Victims:  Endorsement of and Resistance to Cultural Stereotypes in Memoirs by Parents of Children with Disabilities."

Oxygen mask

This week we've been transitioning Maybelle from her crib to a bed (which is her crib with one set of railings removed).

Let's talk about how well I do with transitions:  I'm terrible at them.  I like most things in my daily life to be routine and predictable.  I love the excitement of surprises in my teaching and research (for instance, I loved it the other day when I invited my students to ask some questions I wasn't expecting, and one student--in enthusiasm and sincerity--asked, "Are we going to read any books that are...interesting?"  Led to a great thirty minute conversation).

But in daily life, I love a routine.  I also love getting a decent amount of sleep.  Crib-to-bed transitions don't seem to support either.

The first night was Monday.  Within the first hour of us putting her to bed, Maybelle had gotten up and come to get us 66 times.  I became so overwrought that Biffle sent me to my office at school.  He turned off every light in the house, and Maybelle finally fell asleep.  She got up three times in the night, and at 5:30, she was fully up and ready to start the day.

Night #2:  She got up 7 times in the complete darkness that was our house, then she stayed in her room for 10 minutes, then got up a few more times, and then within half an hour fell asleep.  Awake and ready to go the next morning at 4:30.

Night #3:  Took her about an hour to go down, a dozen times getting up between 7 and 8.  Then she was up at 1, and then between 2:30-4:40 up about six times, which means I basically didn't sleep starting at 2:30.  In the morning.  I stood holding her bedroom door shut between 4:40 and 5 just hoping that it might inspire her to go back to bed.  It didn't.

On Thursday, the day that started at 2:30, one of the students in my WGS capstone seminar mentioned the oxygen mask.  You know, the airline announcement that you have to put the oxygen mask on yourself before you put it on anyone who's relying on you.  As I told the student, this is something I remind myself of pretty much every day.  I needed to hear it that day, in my bleary, emotional, sleep-deprived state.

So on Thursday night, night #4, Biffle and I considered making her bed back into a crib and abandoning the notion of her being a person who sleeps in a big girl bed.  But before we took that step, we decided to try a step that felt sketchy to me, but necessary according to the oxygen mask premise:  we made it so that she couldn't leave her room.

As part of that process, I made her a list of "Maybelle's sleep rules," lifted directly from the book Healthy Sleep Habits, Happy Child (a book that has some good suggestions but is deeply troubling in some of the things it says).  It's a list of things like, "Stay in bed" and "close our eyes."  Maybelle read it several times and seemed perfectly happy with it.  Then we put her in bed, closed the door, and waited (waited, by the way, in a house with lights on--kind of important for me).

She tried to open the door, and when it wouldn't open, she immediately began tantruming.  After a few minutes of this, Biffle went in, told her that we were here, and that she had to go to bed, that she wasn't leaving her room until the morning.  For about ten minutes she was calm, quietly playing in her room, and then she tried the door again and threw a rageful fit.  For twelve solid minutes, she screamed her fury at us, as we sat sort of huddled in worry and vague sickishness in the dining room, listening to the baby monitor, waiting to see what happened.  We knew that we couldn't change our minds, because rest assured, Maybelle is savvy enough about human interactions that she would get that changing our minds = if I throw a 15-minute tantrum, the parents will cave!

In the dark, she pulled the sleep rules off her bedroom wall and wadded them up.  Then she got into her bed and fell asleep.  For the whole night.

The next night she went to sleep almost immediately, with no tantruming at all.  She woke up early--4:30--but played quietly in her room until I got back from my jog, a little after 5, and then the day officially began. Last night she threw a tiny little fit, but when Biffle told her it was time for bed, she got in bed, and that was the last we heard from her until 5 this morning.  Her playing woke me up, so I went for a jog, and when I got back, she was still quietly playing in her room, so I went and got her.  Tonight, she checked the door and has been silent.


I don't know about this sleep stuff, y'all.  I have no idea how much--if any--of this has to do with Down syndrome, and how much just has to do with being a kid who has to learn to sleep.  I do know that we've relied quite heavily on the support and reassurance of some experienced friends.  I also know that there's no set of guidelines that explain The Right Way to do things.

As Biffle and I sat listening to Maybelle's fury on night #4, he said, "I'm sure of three things.  This is all experimental.  It's all gonna work out.  We just have to be really patient."  I stand by what I said to him then:  two of those are a sure thing.

39 years of Roe v. Wade

A few years back I was a regular blogger about the Roe v. Wade anniversary. As it turns out, the last post I wrote about Roe v. Wade was in 2008. That would be a blog post I wrote while I was already pregnant with Maybelle but wasn't publicly announcing it. I was intentionally, happily pregnant, and I was still adamantly in favor of women's reproductive rights. This is an important thing to recognize.

I've obviously had a lot of other stuff going on since then. I've been blogging a lot about parenthood, and about disability rights. But this year I'd like to return to the old tradition and write a post offering a shout out to women's reproductive freedom.

As I've always said, a woman's control over her own reproduction affects every aspect of her life. Every aspect. So I maintain now, as I always have, that we must give women the right to end a pregnancy if they don't want to be pregnant, and the pregnant women themselves are the ones who get to decide why they don't want to be pregnant. It's not a decision that other folks should have a legal right to weigh in on.

I also want to say that I've been pretty powerfully influenced by readings I've been doing about reproductive justice. When feminists talk about reproductive rights, generally they're talking--as I am here--about the right to have an abortion. And this is hugely important. But reproductive justice expands that concept. Scholar Kimala Price explains that the reproductive justice movement's "three core values are: the right to have an abortion, the right to have children, and the right to parent those children." If we really want women to have control over their reproduction, that doesn't just mean that they get to choose not to be pregnant. It also means that they get to choose to have and parent children.

Here's another great quote from Dorothy Roberts in Killing the Black Body (please note that if you're in my capstone course, this is the book we're discussing on Thursday):

Reproductive liberty must encompass more than the protection of an individual woman’s choice to end her pregnancy. It must encompass the full range of procreative activities, including the ability to bear a child, and it must acknowledge that we make reproductive decisions within a social context, including inequalities of wealth and power. Reproductive freedom is a matter of social justice, not individual choice.

Why is this particularly important to me these days? Because I'm doing research on prenatal testing, and we know that when a person has prenatal testing and learns that the fetus has Down syndrome, 90% of those fetuses are terminated. And we all know that when 90% of a group is doing something, it's no longer a matter of simple "choice." As Roberts notes in the quotes above, we're not simply individuals in a bubble, with 90% randomly choosing termination. "We make reproductive decisions within a social context," and our social context tends to tell us that kids with Down syndrome are no good. Defective product. Best to get rid of that fetus and start over.

Biffle and I didn't decide to get rid of that fetus, and we're incredibly glad about that.

I'm adamant that we--and all other potential parents--should have the right to terminate any pregnancy that's unwanted. My ability to choose not to be pregnant is as important now as it's ever been in my life, if not moreso.

But I also see it as part of my reproductive activism to change the social context that would identify my daughter as a defective product (and the word "defective" is often used in descriptions of Down syndrome, trust me--that's not me being hyperbolic). I want to change the inaccurate perceptions of Down syndrome that not only affect people's decisions while pregnant, but that affect the options available to folks who are here in the world: school inclusion, for instance, college possibilities, media representations, availability of jobs.

Is it a stretch to say that programs like REACH are connected to my reproductive justice activism? Maybe a tiny stretch, but only tiny, because if I'd known while I was pregnant that I was soon going to be teaching people with Down syndrome in my college classes, that would have immediately challenged the stereotypes of Down syndrome that were frolicking unnoticed in my mind.

Perhaps I would have had a clue that the thing that's really challenging is parenting.  The hardest things for me about being a parent have nothing at all to do with Down syndrome.  Learning ASL so that Maybelle can communicate earlier?  Easy and fun!  Dealing with a person in your house who says "NO!" to every single question you ask?  Challenging (and developmentally appropriate)!

Alright, so hurray for Roe v. Wade.  People who can get pregnant don't have full humanity unless they have the right to control their own bodies.  And hurray for reproductive justice, which reminds us that reproduction is a far larger issue than abortion, an issue that urges us to make the world a place worth living in.

The end. (Cross-posted at Girl w/Pen.)