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.)

Stuff that happened this week

We haven't blogged this week, so we thought we'd fill everybody in on what's been happening around here.  Biffle and I are sitting on the couch together, so here's what we've got to say collaboratively.

We went to the Colbert rally on the CofC campus on Friday.  We called each other back and forth all morning, having versions of this conversation:  "It's pretty exciting on campus!"  "Should I come?"  "Nah, it's probably not going to be that big a deal.  I'm not going."  And then without deciding, we both went to the rally and found each other there.

I twittered during the rally.  If you're not my twitter friend, or whatever, then you didn't learn the following:

• I'm at the Colbert rally.  Herman Cain sucks.
• Let's be clear:  the tea party sucks a monkey penis.
• Cain was both boring and terrible.  Colbert is an activist genius.

In other news, Biffle is building some benches out at Dixie Plantation from wood from a felled cedar tree.  Here's what he has to say about it:

College of Charleston has an 800-acre plot of land in the middle of freakin nowhere for the school to do whatever they want, so they're using it as a place for their landscape architecture students to do graduate work, they're starting gardens and composting, the Historic Preservation Program is using old bricks, and the graduate student working with me has funding to build a garden.  My benches will be part of that.

We went out there this morning, all of us--as Maybelle explained on the way, it was "Mama...and Boppa...and Maybelle...and Gabe...and car...and hair."  We of course had breakfast at Waffle House beforehand, and then we explored the beautiful clearing where Biffle's benches will be.  A couple of Maybelle's preschool friends happened to be there, and they explored things like spiders, sweetgum pods, and the tire pump that was being used to inflate the wheelbarrow tires.

Biffle reminds me that Dixie Plantation is an old property, and although there's no house there, they have a long row of huge old live oaks lining one side of what used to be the entrance to the property.  They have enormous branches spanning the old (now nonexistent) road, with spanish moss hanging down.  It's stunning.  We wished we'd taken a picture.  But Biffle will be back there, and he'll take the camera.

We had a number of delicious meals at home together because this is the slow music season, so it's as if Biffle and I live together.  I've gotten some serious momentum going on my research, and I may well be able to send you soon to another website to read an opinion piece stemming from the research.

And that's it for tonight.  We're going to have some fried eggplant and finish the first season of Downton Abbey.

Amelia and Children's Hospital of Philadelphia

For some happy news, have a look at the post from earlier today about the non-transphobic Girl Scouts.

But if you want to take action against some dehumanizing injustice, have a look at this post, brought to my attention by Elizabeth.  I guess I should give trigger warnings, because the description of how this family was treated at the Children's Hospital of Philadelphia made me feel sick.  That's why the picture to the left is here:  I find that when I read things like this, I have to go look at pictures of Maybelle, to ground myself.  No matter what sort of bullshit the world believes, she is a person who deserves to be here.

Then read one of Elizabeth's responses, which contains a link to a Change.org petition.  I'm not going to give you the petition link directly here because I want you to go read Elizabeth's post.  Her list of quotations about the value of human life--how recognition of that value is maintained and destroyed--is quite wonderful.

Order MORE Girl Scout cookies

I've seen mention her and there of some campaign that started this week, trying to get people to boycott Girl Scout cookie orders this year.  I personally really love Girl Scout cookies, but I'm cynical enough that I'm prepared for any national organization to do something terrible, so I was worried that the Girl Scouts might break my heart.  I finally clicked on a link to find out what was up.

For those of you who don't know, a 14-year-old Girl Scout from California is in a video explaining that we should boycott Girl Scout cookies because the organization has accepted a seven-year-old transgender girl into a troop in Colorado.

And when I heard that news, my heart leapt!  The Girl Scouts was already my go-to organization.  I was grateful that Maybelle wasn't a boy so that Biffle and I wouldn't have to have a fight over the Boy Scouts, an organization that many individuals beloved to us have taken part in, but an organization that's so blatantly and unapologetically homophobic that I really really wouldn't want our child to be a Boy Scout.

Girl Scouts, however, have never been homophobic, so I was all ready for Maybelle to become a Brownie when she's kindergarten age.  And now I learn the news that the Girl Scouts admit anybody who identifies as a girl, including people like the kid in Colorado who was identified as a boy at birth but who now identifies as a girl.  This is fantastic!

Official quote from the Girl Scouts:  “Girl Scouts is an inclusive organization and we accept all girls in Kindergarten through 12th grade as members.  If a child identifies as a girl and the child's family presents her as a girl, Girl Scouts of Colorado welcomes her as a Girl Scout.”

Right on.

The kid who's critiquing the organization (her video has now been made private, so I'm relying out outside sources here) says, "Girl Scouts describes itself as an all-girl experience."  And I would respond, it's still an all-girl experience!  What exactly does it mean to be a girl?  Does it mean that they're going to perform a vagina and uterus check on all applicants?  That anybody without the right ratio of estrogen and progesterone isn't going to be allowed?  That only people who wear dresses and have long hair can take part?  What it means to be a girl is to identify as a girl.  That's it.

The boycott video continues, "With that label [Girl Scouts], families trust that the girls will be in an environment that is not only nurturing and sensitive to girls' needs, but also safe for girls."  So she's playing on the fear that boys--or just transgender individuals?--are sexual predators.  Can we all take a step back here and recognize that the person who's most vulnerable in the Girl Scout troop is the seven year old person who's transgender?

If the Girl Scout organization is willing to help provide a supportive, nurturing community for that child and the other children who take part, then it's an organization with a meaningful commitment to human diversity.  Which means I am buying extra Girl Scout cookies this year.  Do the same!  My god, the Tagalongs and Samoas are so good anyway.  And now you can feel ideologically happy eating them, too!

Creativity

You know how, when you partner with another human being, there are some things about that person that turn on all your endorphins?  Qualities that impress you--but more than that, qualities that make your body feel lit up, that make you laugh or gasp or tear up with delight?

Biffle's creativity has always been one of those qualities for me.  He sees the world in ways that I can't really imagine.  Things that are intuitively obvious to him regularly strike me as surprising, hilarious, even transformative.  This is the guy who, for one of his earliest woodworking projects, made this:

This is also the guy whose MFA thesis was an extensive community activist project* that engaged with gang violence in New Bedford, MA, in a way that was thoughtful, open, hard as hell to do, and beautiful.

(Please look at the rest of the images linked to "beautiful," above.  This one is beautiful--I particularly love the bird--but it doesn't give you a sense of the larger project.)

Okay, so for the last few years, he's been doing some regular work.  He's been playing music on a very regular basis, and he's been making furniture for folks.  Both these activities are great forms of employment, but the thing that had started to become evident to me was that--sort of ironically--they weren't providing space for Biffle's creativity.  At gigs he was playing other people's songs.  He was playing those songs very well, with enthusiasm, energy, and varieties of different instruments, but he wasn't writing or recording his own music (you know, with 700 harmonies like he likes to do).  Similarly, with the furniture he was making--it was fantastic, across the board.  Stuff that would make your mouth water.  But most people buying furniture don't want the Big Pipe, or the conscientizacao bird.  The truly funky creative stuff Biffle is capable of isn't necessarily marketable.**

I've discovered that I've been missing that creativity, and I know for a fact Biffle has been, too, whether or not he's been aware of it.

January and February are the slow months for gigs, so Biffle's had some free time on his hands since the holidays.  Maybelle and I went back to school on Monday, and what do you think Biffle did?

He thought about the fact that Maybelle, now with perfectly-hearing ears, is listening intently to song lyrics, trying to sing along.

He mused about how much she loves reading.

He reflected on the fact that she's incredibly fond of a song he wrote ages ago (engineered and produced by one of his best friends, Neal Cappellino, with Neal, Neal's wife Linnae, and me performing here and there on it).

And he taught himself to use iMovie so that he could make this:



Do I even need to tell you how I feel about this?


*Please note when you follow this link that it says the post is by Alison.  It's really by Biffle.  We updated our blog in 2006 and it changed all the names from the earlier posts.  Everything from 2006 and back is switched.
**Can I go ahead and say officially, publicly, that I am happy to be the breadwinner?  This man doesn't need to be marketable.

Target ad

I've been notified by seven different friends about the new ad from Target.  Check it out.

A lot of blogs are celebrating this ad, for good reasons:  one of the models, Ryan, has Down syndrome, and Target isn't making a big deal about this.  As one blogger notes, "This wasn’t a “Special Clothing For Special People” catalog."  In fact, Target seems not to be saying anything about the fact of Ryan's Down syndrome at all.  It's as if Ryan is just a child being featured in a children's clothing ad.

This is important, of course.  Seeing people with disabilities in plain old pop culture matters. Biffle and I are intensely aware of that.  Pop culture material like advertising plays a big role in shaping our sense of the world we live in.  And by "our," I mean all of us who encounter this material.  I talk about this in classes a lot:  ads affect our sense not only of what it means to be attractive but what it means to be normal, to be romantic, to be effective and appropriate. 

Individual ads are always carefully designed.  They're expensive enough that every detail is intentional--every curl, every expression, every fold.  It's not an accident when a woman's nipple is almost visible, or when all the wrinkles have been Photoshopped away.

But what's truly important is less the individual ad and more the patterns that are established.  For instance, one pervasive pattern in contemporary advertising is a pathologically thin female body presented as attractive. It would be okay if we had occasional images of pathological thinness, but does every single ad have to feature the super-skinny hairless girl as if she's the norm?

Another pattern is that certain bodies don't appear at all.  There are a number of vulnerable populations that simply don't show up, including people with visible disabilities.

So it's a big deal when those folks appear in pop culture in ways that aren't stereotyped ("Oh, that kid with Down syndrome is so sweet!") or headlined.  It will be a bigger deal when this is less of a shock, when we don't have to have blog posts all over the internet celebrating this image of human diversity (I mean, even Andrew Sullivan had a shout-out to this ad!).  What Biffle and I want is for this to be a pattern, a phenomenon so familiar that we don't have to take notice.


P.S.  In case you're curious about some of the attention this ad has gotten:

• Cool ad watch by Andrew Sullivan
• Meet Ryan, from the Frisky
• This is just great of the day, from The Daily What
• Good Guy Target, from imgur
• Target Is Down with Down Syndrome, from Noah's Dad

I don't read any of these blogs!  So it's cool that this blog world that's unknown to me is paying attention to images of people with Down syndrome.  I was a bit surprised that I hadn't heard of Noah's Dad, given that apparently everyone else on the internet has.

Star Wars for the New Year

I want my first blog post of 2012 to be about good things.  So here's something really good, the perfect thing to start off the year:

I now own six Star Wars t-shirts.  Six.

One more shirt, and I'll have a Star Wars shirt for every day of the week.  I'll never have to wear anything else.  College of Charleston students and colleagues, are you ready for this level of coolness?

This one's the oldest, and possibly the best. If you don't understand what it means*, leave a comment and perhaps I'll fill you in.

Thanksgiving present this year.  How many of the shirts and Star Wars accessories pictured here** were purchased by Trey?  Hints below.

Another fall present, this one from Eliza.

Here I'm playing with Maybelle's toys, brought to her (by Trey) when she was still in the NICU.

Christmas 2010.  All my siblings own shirts like this.

Christmas 2011.  This one's probably a good choice for my first day of teaching this semester.

*Umm, but do any of us understand what any of these shirts mean?  Why is Darth Vader grooming shrubbery?  Why is Princess Leia in the style of Toulouse Lautrec Mucha?  Why do I love them so much?  Nobody knows! 
**One sad thing is that I didn't even get all my Star Wars accessories in the pictures.  There's no Star Wars Trivial Pursuit here, no bobbleheads, no reprint of the original poster, no pop-up Star Wars book.  You might look at these pictures and not understand how serious a Star Wars fan I am.  But only the real Star Wars, none of this recent crap.