Halloween through the years

Duck.  She was two months old.

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

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

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

Mary Poppins, 2012.

Wonder Woman, 2013

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

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

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

So Larry brought us home.

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

Girls:

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

Boys:

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

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

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

Happy Halloween!

Suspicious Alison

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

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

Big girl bike: Day 1

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

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

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

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

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

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

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

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

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

Maybelle's big girl bike

I'm mostly pretending to be happy here.

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

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

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

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

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

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

My new publicity photo*

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

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

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

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

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

Hell, yeah.


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

Life on a bike

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

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

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

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

Of course there's always this option:

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

I'll keep you posted.

Feminist disability studies scholar attends the NSGC

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

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

It's glowing!  Magical sperm.

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

Who doesn't love Nekot cookies?  Mmmmm.

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

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

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

Alison at the National Society for Genetic Counselors

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

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

GREAT picture from Judith Tsipis!

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

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

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

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

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

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

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

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

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

Fabulous new hairstyle

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

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

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

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

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

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

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

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

And then we got to the magic layered look:

Even Nina approved!  Not triangular!

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

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

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

My parenting priorities

Thanks to Uncle Trey for yet another great picture.

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

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

Except I don't care.

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

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

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

Note:  Stickiness along with reading.

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

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

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

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

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