Maybelle's first snow

It's been flurrying for the last several days in Cookeville, where Maybelle and I are spending the remainder of our holiday vacation.  Maybelle's a Charlestonian, so she's not that fond of snow.  It's fairly cold, and it's not affiliated in any way with swimming, performing numbers from Oklahoma, or eating yogurt--her favorite activities.  But it's her first snow!  I felt it was important to get her out in it--to force her to interact with it and acknowledge its existence.

Claire, who comes from upstate New York, has suggested that we go sledding.  This, she has said, is the way to make snow really fun, and she's asked several times whether I've had a chance to do it yet.  So this morning I thought I should document what "snow" means in middle Tennessee, so that Claire can let go of this lovely and yet not really applicable notion.

Hot tap water

I like to drink a cup of hot tap water.  It's one of my favorite winter beverages.  Amber has suggested that this makes me a bit like someone's grandma.  In fact, it's a beverage that even Maybelle's Nonni rejects.  But I truly enjoy it. 

I'm drinking a cup of it right now.

It's like exactly the temperature of my body, so I can stay hydrated without getting chilly.  It doesn't hurt my teeth.  It has no flavor, no caffeine, no effect on my breath.  It requires no effort to have a cup, and then another cup.

I'm not sure that I'm the marketing genius who's going to make this drink take off, but I'm surprised other people don't enjoy it as much as I do.

Far from the Tree--I finally finished it

Far from the Tree is a challenging book.  It's grim.  The last chapter is about love, and Solomon has some beautiful things to say about love in the face of challenge, about the fact that challenges only make love stronger, more complex, more inexplicable.  But the book as a whole isn't an upper.  I guess this isn't surprising; as Solomon admits at the end, "For many years, my primary identity was as a historian of sadness.  Pictures of despair are widely admired, and perfect bleakness is generally thought to reflect the integrity of the author.  But when I've tried to write about happiness, I've had an inverse relation, which is that you cannot write about it without seeming shallow."

I've been reading the book during a challenging period in my own life, so that's affected what I've seen, of course.  And I've been reading through my own lens, the lens of a person for whom Down syndrome isn't a "disease" and certainly isn't a tragedy--it's simply one of many characteristics that helps make my daughter the person she is in the world.  So this is a book that's triggered a lot of tension in me as I've read.

Thinking about the book as a whole, it strikes me less as a book about love and more as a book about the terrible suffering that happens in so many families, for so many different reasons.  Every chapter documents all kinds of suffering--children who are neglected despite their mothers' best efforts because they were conceived when the mother was raped, families where the parents are exquisitely loving but that doesn't alter the destructive effects of schizophrenia on one of the children, school systems that refuse to allow a transgender child to be the person s/he is.  Every chapter has glimpses of happiness, of course, but just glimpses.  It's a book that leaves me feeling sad, feeling that there's a great deal of work still to be done.

And this may be Solomon's honest assessment of the world he's extensively researched.  I don't know that I can offer this as a critique of the book specifically.  Solomon has done his work:  he's made long-term relationships with the families he's interviewed.  The breadth of his conversations are impressive.  He mentions talking to a family when a child was young, and then again when the child was in high school, and then interviewing the child in college:  I've got nothing like this in my own research experience.  So I'm not suggesting that Solomon hasn't done his work.

I'd like more hope, though.  And this is related to my earlier thoughts on the book.  I have a friend who has a daughter who exhibits some characteristics that might be related to autism, and under no circumstances should this friend read the book.  This book should be kept far, far away from her.  I'm not kidding.  If you're a parent with potential anxieties about autism, this book will only trigger all your fear and misery.  You get a couple of pages of happiness about neurodiversity, and the rest of the chapter is about how miserable and difficult life is.

I get that it's important that we allow all parents to express the complexity of their emotions.  Expecting parents of kids with disabilities to adhere to a party line of "everything's great!" is oppressive, of course, and reductive.  But I feel that we get plenty of narratives in the world that portray the grief and difficulty of parenting a kid with a disability (most parents' memoirs, for instance, offer more of the grief than of the recognition that things are pretty good).

He portrays a world in which more social supports would be useful--and I agree with this.  He advocates for community, for the formation of the sorts of families and societies that will support each of us--and I agree with this, too.  He's also a big believer in reproductive rights.  So most of the premises of the book are premises I agree with.  And if you're a parent who is miserable, this book will probably be extremely comforting, because it's a book that will let you know that there are others struggling like you--others who aren't bad parents but who are human beings with a range of emotional reactions.

He also claims several times that diversity is a strength.  Near the end of the book he acknowledges that research shows that inclusion in society helps everybody:  "Building a compassionate society benefits not only those who are newly tolerated, but also those who who are newly tolerating."  And yet I didn't finish the book with this as my overarching take-away.  My somewhat snarky take-away is, "Wow, parents of kids with challenging identities are such heroes.  Their lives sure are hard."  Since I'm thinking a lot about the ways we encourage prenatal testing, and the ways in which we make termination of pregnancies the intuitively obvious "solution" to differences identified in utero, I found the book troubling.

This is a book I'll return to.  Solomon has enough solid ideas that I suspect I'll quote him.  But it's not a book I'm going to suggest my friends rush out to read.

Things that suck a monkey penis; or, requests for suggestions for my column name

As y'all know, I write a monthly column for Charleston's City Paper.  I've been doing it since July, I guess.  It's been fun, and I continually get feedback on it.  For instance, Conseula and I had lunch today at Jack's, and as I was checking out, the cashier said, "I love your column!"

Every time I write a column, though, it's just labeled "Guest Column."  I'm a regular monthly columnist, so it's time that my column has a name.  And I am terrible at coming up with names.  Just terrible.  So I emailed my editor to ask him for suggestions.

He wrote,

Hmm.

Give me some themes to work with. Like say three words.

All I can come up with now is: On a Gender Bender. And I don't think that even remotely works.

So I responded,

Ha!  But that’s better than anything I’d come up with!

Themes: whatever Alison wants to talk about.  Feminism.  Sexism sucks.  Tearing down the white supremacist heterosexist patriarchy.  Ovaries are awesome.

And he said,

Ooh.  Ovaries Are Awesome.  Interesting.

Okay, that was just me riffing.  My column can't be titled "Ovaries Are Awesome."  I'm not that committed to ovaries. They are awesome, but so are lots of other body parts, and really I don't want to essentialize women.

Then this afternoon, I was sharing this dilemma with Amber.  During that conversation, she happened to notice some pictures on my desk--pictures that Catherine, Trey, and I drew over the weekend.  Pictures of monkey penises.  She was sort of shocked.  I told her that sometimes when things suck really badly, they suck a monkey penis.  And that's what these pictures were meant to capture.  (I've made it really small here so perhaps you won't be as distressed as Amber was.)

Then Amber suggested that my column often identifies things that are wrong with the world:  sexist underwear, elected officials who think that you can't get pregnant if you're raped, college campuses where women are raped on a regular basis, and women not being elected to political office.  She suggested that the column be called

Things That Suck a Monkey Penis.

So, Baxter Sez readers, it's time for you to come up with some better suggestions for my City Paper column name.  Please leave them in the comments section!

I made it to 40

I talked with my parents this morning and told my mom she doesn't seem nearly old enough to have a forty year old daughter.  And yet, she does!  Here I am.  I made it to forty.

When the brain tumor was diagnosed three years ago (or, precisely, two years and 352 days ago), I wondered if I'd make it to forty.  I'm really happy--and grateful--to be here.  Maybelle is four--another thing I wondered:  would I see my daughter this old?  My memories of childhood start around four, so I'm delighted that I'm part of Maybelle's life right now.

And my health is good!  This isn't the blog post announcing that I'm on the decline.  But I thought I'd be sort of honest here and share what I don't often share in person:  this birthday is important to me at least in part because it means I'm still alive.  My mortality is part of my consciousness a lot more than I let on.

Last night I got into bed and got to nestle next to a sleeping Maybelle (have I mentioned that we're doing the family bed these days?  We are.  Snuggle-bugging all night long).  I got to smell her lavender-shampoo hair, and her kind of funky breath, which I love.  I'm so grateful for her little warm body, and for her wide eyes and smile in the morning.  "First potty, then Lela and the girls*," she said this morning.  Excellent way to start the day.

She also wished me a happy birthday, when I prompted her.

I'm grateful for having such a powerful circle of friends.  My best friends in the world were here for my birthday weekend.  (We didn't get a picture together!  How is this possible?)  I've never had that happen before, and it was such a gift.  Their different strengths and talents were on display, from excellent questions to savvy reframing of difficult situations to warmth and teasing.  I felt like I was in the middle of...what...only goofy metaphors are coming to mind:  a vortex, a circle of uplift (Eliza:  come up with a better metaphor!).  And all of them love Maybelle, who can name them all and is perfectly happy to request that they pick her up, put her on their shoulders, take her to the potty, etc.

I'm grateful for Uncle Trey (his official name now, although that might be a bit creepy since he's my brother, not my uncle), who is attempting to overcome his fear of poo atoms and wipe Maybelle's bottom.  

And let me tell you how great my family is:  great!  I have a reliable source of unconditional love from Aaron and Mary, and my mom and dad.

With each new decade, I'm realizing more and more that life is a combination of things that are incredibly challenging and things that are wonderful.  They're both happening all the time, at the same time.  So today I'm going to try to focus on the wonderful stuff.  I'm wearing my "Han shot first" shirt.  I'm eating Hershey's candy cane kisses.  I'm going to have dinner with loved ones tonight and then watch Star Wars.  And I'm forty!


*Lela and the girls are her hand-me-down Groovy Girls.  Lela was initially her favorite, and the other three are "the girls."  Each one's name is "girl."  A bit like Larry, his brother Darryl, and his other brother Darryl.

My early thoughts on Far from the Tree

I've made progress in reading Andrew Solomon's Far from the Tree:  Parents, Children, and the Search for Identity.  This is the book I referred to in a blog post earlier this week because so many people had sent me links to Cristina Nehring's review on Double X.  Nehring offers her story of her own mysterious, challenging, delightful, and enriching life with her daughter Eurydice as a counternarrative to what Solomon offers.  Her review made me fear that Solomon's take on Down syndrome was going to make my jaw sore from all the grinding of my teeth.  My expectations for him were low.

So I'm happy to report that his chapter on Down syndrome didn't enrage me as I'd feared it would.  It also didn't delight me.  It made me sigh several times in sadness.  Like, "Really?  We're still having to fight this battle?"

One small but significant problem:  he uses the phrase "mental retardation" several times.  The use of this phrase doesn't define someone's work, of course, but it's often a warning sign.  We simply don't use this phrase anymore.  It's an insult, not a description.  The descriptive phrase is intellectual disability.  When people use the phrase "mental retardation" without scare quotes (as one might say, "Back in the day they called people like Maybelle 'mentally retarded'"), then I think at best they haven't been paying attention.  And he has been paying attention to other groups.  He understands the difference between "deaf" as descriptive and "Deaf" as the term for a cultural group.  He explains in his chapter called "Dwarfs" that

The word midget, first coined to describe LPs [little people] displayed as curiosities, and drawn from the midge, an annoying small insect, is now considered deeply offensive--the LP equivalent of nigger or spic or faggot--and many mothers told me how much they feared that their child would be subject to this appellation. But the general population doesn't know that midget is an insult (126).

The general population doesn't know, but he knows and he informs them.  Why, then, doesn't he know the same fact about "mental retardation"?

Another moment at which I sighed:  he began his description of Down syndrome with a list of potential medical problems, a list nine lines long.  This is an incredibly common thing.  Many women who've had prenatal testing and learned that their fetus has Down syndrome are immediately greeted with this description of the condition:  nine lines of potential pathologies.  Your child might have thyroid disorders!  Celiac disease!  And let's not forget Alzheimer's!

Fortunately, Solomon doesn't stay simply in the medical pathologies.  His chapter on Down syndrome is complex, but it leans toward grief.  I was surprised to find that his discussion of Emily Perl Kingsley, author of "Welcome to Holland," and her son Jason Kinglsey, author of Count Us In:  Growing Up with Down Syndrome, portrays them as somewhat tragic.  Although this family was a crucial force in destroying myths about Down syndrome, Solomon shows them as trailblazers who are now sort of sad, because they recognized that they couldn't change as much as they'd hoped to.  Jason is doing much better than people with Down syndrome were thought to be able to do, but he's still not able to do everything he wants.  Solomon reports,

[Emily Kingsley] told me mournfully, "The primary job of most parents is to make their kids think they can do anything; my primary job is to take him down.  Reduced to a sentence, it's 'You're not smart enough to do what you want to do.'  Do you know how much I hate having to say that?" (176)

But of course, this is true of everybody, right?  I live with a person who's gone through years of his life a little sad that he's not a professional musician.  As a father interviewed in this chapter says, "We all learn that we have strengths and weaknesses.  I'm never going to be able to play basketball.  Is it sad when you realize that you're different?  Or is it just somehow coming to terms with your own identity?" (218).

Two people not looking mournful.

I met Jason and Emily before Maybelle was even a year old, and they didn't seem tragic to me.  I thought it was just wonderful to meet them, and I wish I had a picture of Jason squatting down and playing with Maybelle and her friend Rosemary who were lying on a baby blanket together.  As I read this chapter, I wondered what the Kingsleys think of it as they read what he did with their interview.  Was this what Emily Kingsley was going for?

He presents happy parents as well, and he has some very good thoughts about how troubling it is when parents praising their kids with Down syndrome emphasize their intelligence.  He notes that "to universalize intelligence and achievement as a measure of worth is in some ways to deny who they [people with Down syndrome] are.  They are not so bright and can't accomplish so much by general standards, but have real virtues and are capable of personal fulfillment" (204).  I wish he'd take this point a bit further. 

Solomon and others who don't have an intimate connection with Down syndrome often display what my friend Claire calls "impoverished imagination."  They see people with qualitatively different lives--particularly where intellectual disability is concerned--and they think, "What a shame."  What Nehring argues, and what I'll be arguing in my book, is that people with Down syndrome offer more than a model of personal fulfillment--i.e. the best-case scenario isn't merely, "Well, they're happy"--although that's important, of course.  But more than this, they bring real diversity to the world--a different way of evaluating achievement and intelligence and value.  Maybelle's life is forcing me to question my assumptions, to discard them, and to have the opportunity to imagine something different.

I'm still only a third of the way through the book, so I'll report back in when I've finished it.

A review of Far from the Tree

I'm still reading Andrew Solomon's Far from the Tree.  I haven't finished it yet--indeed, I'm only on page 95 out of 962 pages (!!)--but I'm finding it quite thought-provoking.  For instance, here's a great quote about parenthood:

Loving our own children is an exercise for the imagination.

And this one:

It is always both essential and impossible to tease apart the difference between the parents' wanting to spare the child suffering and the parents' wanting to spare themselves suffering.

I'll blog here in a substantive way when I've finished the book.  I can already tell that Andrew Solomon is going to be quoted at least once or twice in my book.

But here's why I'm blogging:  three or four people have sent me a link to this review in the last 24 hours.  It's a really good piece, and it makes me strongly suspect that I'm going to be gritting my teeth painfully while reading Solomon's chapter on Down syndrome.

"Loving a Child on the Fringe."  Check out the adorable pictures of Eurydice.

Temple Grandin at CofC

Last night Temple Grandin spoke at the College of Charleston, a free public lecture sponsored by the REACH Program.  And the night before, I got to have dinner with her!

Dr. Grandin is a person who's so famous now that I don't feel the need to introduce her at all.  In fact, one of the really interesting things we learned at dinner was how she responds to that fame.  She said she feels it as a tremendous responsibility.  She said that she didn't want to let it get to her head, and she made reference to Greg Mortenson and General Patraeus as people who'd made that mistake.

"The thing with those two," I said, "is that everybody didn't respond by saying, 'Oh, white men.  We knew it.  We knew that they weren't capable of achieving anything, and they've proved it.'"

She agreed.  As a person with autism, people are looking to her as an example.  She said that she has to be careful how she behaves.  "I can't ever get angry in public," she told us.  She's a huge advocate for appropriate, polite behavior from all kids and people, and she was especially emphatic about how important this is for kids with intellectual disabilities.  "Teach them to say please and thank you," she said.  "Teach them to shake hands and say 'Nice to meet you.'  Teach them to take turns."

Biffle and I have been talking about this with Maybelle.  I'm really quite comfortable with her being a naked, syrup-covered person who stands on the dining room table turning the light on and off, but we recognize that she's got to learn what the outside world's expectations are for behavior (and, in fact, she's doing pretty well with this).  While our household can be a place where she's experimental and boundary-testing, appropriate behavior is going to make things easier for her in the rest of the world.  People are already going to have low expectations for her.  She'll already have challenges.  If she is incredibly polite, she'll immediately challenge people's assumptions.

I have mixed feelings about this, though.  This is due in part to my upbringing, which was replicated in our visit to my parents over Thanksgiving.  Pretty much the only rule for Maybelle in my parents' house was that if my parents' feet were cold, Maybelle had to wear slippers.  That's it.  My parents taught me that "rules" and "appropriate behavior" were quite pliable, not to mention socially constructed.  I remember my dad joking at the dinner table that probably my brothers and I would consistently be eating with silverware by the time we went to college.

Okay, but back to Temple Grandin.  She characterized herself as a "bottom up" thinker, and she was skeptical of all labels.  "I don't care about the label," she told some of the parents who came up to ask questions after her talk.  "Just tell me about your child.  I need to know more details before I can give you my opinion."  And in general her advice was that they should try different things.  If their child is improving--doing better with reading, or communicating, or math, or art--then they're doing great, and keep doing it. 

She was also a huge advocate of supporting each child's strengths.  If a kid is terrible at reading but great at math, then let that kid keep doing better and better with math.  "But don't push it on them," she said.  "Learning is supposed to be fun."

I also appreciated how she characterized herself.  She's a person who does a lot of talks about autism (she told us at dinner that about 90% of her time is spent on the road), but first and foremost she describes herself as a professor at Colorado State University, someone who specializes in livestock management.  And she's also a person with autism.  "Autism doesn't define me," she said.

I really enjoyed her talk, and I was honored to meet her.  I didn't necessarily agree with everything she said, though.  Even though Women's and Gender Studies was one of the cosponsors of her talk, she expressed intense skepticism about WGS to the WGS students who took her to breakfast yesterday.  "You've got to be able to do things and get a job," she told them.  I didn't get to give her my "what you can do with a degree in WGS" spiel, but if I meet her again, I will.

Latest article in the City Paper

Starting on November 18, our local paper has been running articles about rape on the College of Charleston campus.  The Nov. 18 article focused on an alleged gang rape of a female athlete by a group of male athletes.  She dropped out of school in the aftermath.  They did not.  Here's my response in the City Paper.

And in case you want some of the other stories, here are the ones from the Post & Courier:

• “Dad faults police, College of Charleston in investigationof sex assault involving athletes”
• “Accusers, families seek changes in handling of sex assaultcases at College of Charleston”
• “CofC president defends school’s response to allegations ofsexual assault”

Things we have eaten:

Trey and I:

• Three separate meals of turkey, gravy, sweet potato souffle, and cranberry salad
• Ralph's butter twists
• Japanese food at Taiko
• Fish tacos
• Several bowls of homemade granola
• Pecan and cherry pies
• Whipped cream on pie and coffee

Maybelle:

• Cheerios and soymilk
• Bananas
• Sweet potatoes, and most importantly--and most often--
• Yogurt

Sarah Josepha Hale

Sarah Josepha Hale should be on a t-shirt.  If she's already on a t-shirt, someone should get that for me for a present.  Of course she's got some problems--everybody does, and when you're a feminist scholar studying folks, those problems become apparent.  But she was an incredibly influential woman in the 19th century, and it's because of her that Thanksgiving is a national holiday.

For 25 years, she wrote letters to the Presidents.  She was like, "Listen, y'all, July 4 is a great holiday, but it's the only one we've got.  You know that it would help our national unity if we had one more, at a different time of year, that has symbolic connection to the founding of our country and all that."  She said, "You know that everybody loves turkey, and people need an excuse to eat a ridiculous amount of pie.  So come on."

Because she was the editor of Godey's Ladies Book, a magazine that was so famous that it makes famous things today look puny by comparison, people paid some attention to her.  And in 1863, Abraham Lincoln was like, "Dude, that SJH has a good idea.  This Civil War's got everybody down, and pumpkin consumption is on the decline.  The sweet potato lobby has been pushing for more support.  So what the hell:  let's make Thanksgiving a national holiday, on the fourth Thursday of November every year."

And here we are:  celebrating Thanksgiving, but most of us not offering the tiniest thought to the woman who made it happen, Sarah Josepha Hale.  Just about every year I draw people's attention to her, and yet I haven't generated the kind of viral attention that SJH needs.  So tell your dining companions about her.  She got us all a day off and a patriotic opportunity to eat pecan pie (and celebrate the eugenic efforts to rid the country of its indigenous population, but we'll put that aside for the moment).

Hurray, Sarah Josepha Hale!

Thanksgiving post #1

This morning Uncle Trey, Maybelle, and I are heading to Tennessee to spend the holiday with Nonni, Poppi, Uncle Aaron, and Aunt Mary.  Biffle is staying here.  He needs a break, some true down time.  I might have been suspicious of this, but two weeks ago I was at the National Women's Studies Association Conference for five days--five days alone in a big, luxurious hotel room.  Alone.  It felt like an amazing retreat.  So I endorse Biffle having a retreat of his own.  Plus, holidays are often a weird combination of excitement and dread, connection and tension, happiness and serious depression (as was the case for me last Christmas). If Biffle wants to sit this one out, right on.

More about NWSA

Yesterday I bought nine books.

I came to Oakland with six books.  I read two on the plane, and wanted to be sure I had options for what to read here, and on the way home.  Plus, I needed books to help me complete my presentation, which is this afternoon.

That means that when I pack tomorrow to leave, I'll have to somehow fit fifteen books into my suitcase.

I'm not allowed to buy any books today.

#NWSA2012

(I wrote the title that way to show that I'm in the know.  I just recently learned about all the hashtag business.)

I'm at the National Women's Studies Association's 35th conference this weekend, in Oakland, CA.  I feel a bit like an extravert at this conference, because I get to hang out with my cool, funky, super-smart feminist friends from around the continent, and I just get in the habit of talking and talking and talking.

Because of the time zone shift, though, I get tired really early.  Last night Patricia Hill Collins gave what I'm sure was an excellent keynote address, but she started at 7:45pm.  Which to my body meant 10:45.  And you all know that I tend to go to bed by 10, so I couldn't really process what she was saying.  I'll get her new book, though, and then maybe I'll have things to say about her.

At lunchtime I was wide awake.  Just before lunch I'd been up in my room, pondering a chapter in my book project, and thinking about eugenics.  Disability studies scholars use the term "eugenics" quite often, particularly when talking about prenatal testing and termination of pregnancies, but I find it troubling given the conversations I've had with women who've terminated their pregnancies.  Their stories aren't stories of "we need a better baby."  Their stories are about feeling that they can't bring a person into the world when that person will suffer and not have the life they want their child to have.

So I sat down at the lunch table next to a person, and asked her what she studies.  "The history of science," she said.  "Particularly eugenics."

Hark!  What a perfect coincidence.  So I asked her questions and wrote down her answers.  I'm going to be quoting her in my talk on Saturday.  She agreed with me that this whole line of questioning is incredibly complicated (the thesis statement for my book), but she made a compelling argument that decisions people are making today about which children to have do seem quite similar to the Progressive Era eugenics she studies.  She said that eugenics becomes a kind of cultural context, so people are voluntarily making decisions that fit within a eugenic context.  It's not that the individuals are eugenicist--they aren't Nazis--but they are part of a context that's shaping the choices available to them.

Her name is Susan Rensing, and she knows who I am because she teaches my stuff in her classes.  She doesn't teach Girl Zines--that would be too obvious.  Instead, she teaches my Motherlode essay and one of my favorite blog posts, "Reasons why feminism is a good prerequisite for having a child with Down syndrome."  I think it's awesome that her students are discussing these pieces!  I would love to be part of the conversations.  Susan, you should Skype me in.

Also, I learned from Susan's colleague Christie Launius that Susan's students think we look alike.  So let me say to any of Susan's students who are reading the blog:  she has a much funkier haircut than I have now.

Halloween

We had an excellent Halloween this year. Maybelle still didn't accept any candy while trick or treating, which was a bummer for her chocolate-loving parents, but she enthusiastically enjoyed just about every aspect of the holiday.

She was Mary Poppins this year.  It's a movie she adores (in fact, she's watching it right now, as I type this blog post), and one of the benefits is that it's a good enough movie that it's only now becoming horribly irritating to Biffle and me.

Biffle found all the different parts of her costume at thrift stores around town, and altered them in various ways so that they worked to create a really solid Mary Poppins look.  You can't see it in the picture here, but he went so far as to do some elaborate painting on the handle of her umbrella so that it looked like Mary Poppins' parrot handle.  Maybelle loved, loved, loved her costume (in fact, she's wearing the Mary Poppins hat right now, as she watches the movie).

Her school did a parade on campus as they do every Halloween.  It's such a neat tradition--folks come out of their offices and wave at the kids as they walk down the street from their school to the center of campus.  Then at the center of campus--the Cistern--the kids run around, leap into the air as if they're Mary Poppins, and get pictures taken.

Here we are, getting our picture taken together.

And here are Maybelle and Megan, who's dressed as Batman. BatMAN, not Batgirl or Batwoman. She felt that she should be allowed to be the main hero regardless of gender, and of course I support her in that.

Trey was dressed as a terrifying cardinal. When we gathered with friends in our neighborhood for the Halloween party we've attended since Maybelle was two months old, Trey and I were both in truly disturbing rubber heads he bought for us. I was a squirrel. Claire and Larry didn't know that Trey (or Treydinal) was behind them in this picture. I think they were both quite creeped out when they saw it.

Maybelle wasn't all that creeped out. She learned quite quickly that the cardinal was Uncle Trey and the squirrel was Mama.  Here she's taking the cardinal head off to reveal Trey.  For what it's worth, she's now sitting beside me, watching me type, and she looked at this picture and said, "Uncle Trey."

It was a Happy Halloween!

Embracing Human Diversity

Check it out--a podcast!  This is the talk I gave at the Unitarian Church in August.  I just listened to it--it's pretty good.

One more picture from the fair

Amber said this picture is her favorite one from my pictures of the fair. She said that the looks of confusion and vague irritation are a regular part of Claire's and my life, and for us to be captured together with these expressions was just great.

I find that very amusing.

The fair, 2012

Saturday, as a tropical storm was bearing down on Charleston, Claire, Adam, Nina, Uncle Trey, Maybelle, and I went to the fair.  Why?  According to Adam, "The fair is the best day of the year!"

I figured that the worst case scenario with a visit to the fair on a rainy, gusty day was that we'd be eating funnel cakes while shivering under vendors' tents.  Instead, we had a sort of best case scenario:  it wasn't raining, but everybody stayed away, so we had no lines for any rides.  None.  No lines.  Adam, Nina, and I have ridden the roller coaster the Crazy Mouse several years in a row, and we've always had to wait and wait and wait--up to 45 minutes or an hour.  This time we walked onto the ride, rode, and then walked around to the entrance and rode it again.

(The second time we rode, Nina did not sit next to me, because she observed--correctly--that I scream the entire time.)

It was also a kind of best case scenario because this year, Maybelle enjoyed just about all of it.  In previous years she's been terrified of animals and wary, if not terrified, of rides.  This year she was fairly open to the animals, and she really enjoyed the rides.

Nina and Adam were both incredibly sweet--for rides that were too small for adults to ride, they rode with Maybelle.

Maybelle rode the merry-go-round twice--once with me, once with Claire (after the first time made me a bit sick to my stomach).

Claire and Trey both expressed admiration for my dad's rule at the fair--no rides that go in circles or leave the ground--but Claire broke that rule twice, once by riding the merry-go-round and once by going on the skyride with me and Maybelle.  The skyride is like a ski lift.  It takes you up hundreds of feet in the air with only a bar across your lap.  Once we got up there, Claire and I were both a bit terrified, clutching Maybelle's body so that she couldn't move at all.  Fortunately, Maybelle thought it was pretty cool.

Trey didn't ride a thing.  He took tons of pictures and enjoyed the best part of the fair:  food.  Collectively I believe we ate elephant ears, funnel cakes, sweet potato fries, corn dogs, gyros, and one turkey leg. 

Maybelle ate two containers of yogurt.  She still wouldn't even try the funnel cake.  So we have one more thing to work on for next year's fair.

What, Alison went to DC with students?

This is probably the last post about this trip.  Today the Charleston City Paper published an article I wrote about our DC experience, "Why Do So Few Women Seek Political Office?  On the Run." 

If you've read all the previous posts, you've gotten this story illustrated.  But you haven't seen the pandas!

Southeast Zine Fest TODAY!

I'm sorry to be so late in writing about this fantastic event!  I meant to post yesterday, but the day was quite full on campus, then I was hanging with Maybelle in the evening (the rocking chair broke--very sad time for her--she cried and cried), then Biffle made a delicious dinner and we talked and ate, and then I was too sleepy.

This is the kind of information that could be in a zine.

So, today is the Southeast Zine Fest, the first zine fest ever in Charleston (or in the entire state, and perhaps in the entire Southeast, as the title suggests).  It's at Redux, downtown. It starts at noon.  And I am speaking at 1:00!

There's the first slide in my Powerpoint.  I'll be talking about the predecessors to zines and about zines now and the kinds of things they address.  I worked for several hours on the talk yesterday--it's a version of a talk I've given before, but always before I've been asked to give academic talks.  This isn't necessarily an academic crowd, so I worked hard to change it.

Biffle suggested that I try to channel Margaret Pilarski and Susan Cohen, the two creators of this event, and speak the way they did at Pecha Kucha (to see that video, go to the Southeast Zine Fest link, above), but let's be clear here:  that's not my skill set.  They are awesome, and I simply don't speak that way. 

What is my skill set is teaching, so I decided to go with that mode for the Zine Fest talk.  Rest assured it will still be somewhat academic, because there's no way for me to escape that entirely, but what I decided to do is a lot of "Look at this zine (on the screen)!  What's it doing?  What do you see?"  So if you come to my presentation you'll learn about zines and feminism, and you'll get to participate in a conversation about--for instance--how the Riot Grrrl NYC zine made a woman's vulva look like an apple.  You know, stuff like that.

And one final plug:  here's a great interview with Margaret Pilarski, national editor at Skirt! magazine, member of the Women's and Gender Studies Community Advisory Board, and alum of the WGS Program at CofC.  And rest assured I use her for as much PR as I possibly can!  It's gratifying when you have such cool people as alums.

Final post about DC

We made it back home!  At 4 a.m. we were sleepily stepping off the bus into downtown Charleston.

Let me give you the highlights of Tuesday and Wednesday.  Tuesday was full.  Full.  We visited the National Women's Political Caucus, EMILY's List, did a tour of the Capitol building, met Congresswoman Eleanor Holmes Norton, and visited with the Women's Office of USAID.

To the left you'll see us at one of our few moments of down time in the day Tuesday, enjoying some second breakfast at a capitalist coffee bohemoth that can be found every block or so in DC.  This wasn't a planned event, but it was one of the best moments of the trip for me.  We were all caffeinated and energized, and we were able to get to know each other a bit before we headed off to EMILY's List (an organization that is probably one of the wealthiest places we visited).

Here we are with Congresswoman Eleanor Holmes Norton--a great person who was an active civil rights leader and feminist, and has been in Congress for a couple of decades.  Getting to meet her was another highlight of our trip for me.

Probably the biggest highlight for most of us was Wednesday morning, when we toured the White House.  The tour of the White House isn't that exciting--you only get to see the fancy dining rooms and parlors, filled with beautiful furniture.  I'm never all that impressed by fancy dining rooms and parlors.  While we were there, though, a guy in a suit strolled casually by.

"There goes Timothy Geithner," says Marguerite.  We all look at her expectantly.  "The Secretary of the Treasury."  Whoa!  He obviously just left a meeting with Obama.

Then as we're examining super-detailed wallpaper in some unused room, the guard says, "You might want to head to the window.  Marine One is landing."  Lo and behold, the President's helicopter lands, and a few minutes later--while all our faces are pressed to the windows--Obama strolls out of the Oval Office, waves at all of us, boards the helicopter, and flies away.

Here we are, at the spot where the suffragists initiated White House protests.

We split up and visited monuments and ate lunch, and we met back at the Department of Labor, where the students got to hear from a number of folks who work for the Office of Women's Affairs while I stood out in the hall managing phone calls from the bus company and the bus driver, who were trying to deal with the fact that our bus had broken down.

Short end of the story:  we ate pizza in our pajamas at the bus driver's hotel, then we loaded up in the repaired bus and made it back to Charleston by 4 a.m.  A great trip, and ten out of the 27 students told me they're considering running for office now.

Reporting on a day in DC

I told Biffle yesterday evening that the bottoms of both my feet felt bruised from standing up and walking around literally all day long.  He pointed out that he spends all day on his feet most days, and then when he has a gig, he spends all night on his feet, too.

Yes, that's true, but all day on my feet is a bit unusual for me.  He'd feel stressed if he spent four hours answering emails like I often do!

We had a great day yesterday.  We didn't get to meet Ruth Bader Ginsburg or deliver our tshirt, sadly, but I learned a lot at the Supreme Court, including the following:

• There is a basketball court above the courtroom in the Supreme Court building.
• You have to have no qualifications whatsoever to be a Supreme Court Justice--you only have to be nominated by the President and approved by Congress.  You could be a squirrel.
• They get about 10,000 petitions a year and accept around 80.

My friend Eliza, after reading yesterday's post, texted me that she sees RBG (that's what I call her now) at events she sometimes attends in DC.  Eliza will soon be receiving a tshirt to deliver.

Entering the Sewall-Belmont House

The surprising hit of yesterday's touring was the Sewall-Belmont House, home of the National Women's Party and a women's history treasure trove.  We'd watched Iron Jawed Angels in our Intro to WGS class, and this museum makes the most of that movie, showing us things like Susan B. Anthony's desk that Alice Paul reveres, and pictures of Inez Milholland, the woman on the horse who died campaigning for suffrage, and pictures of Lucy Burns in jail.

We also got to see something they just recently discovered in their collections:  embroidered cloth from Occoquan, the prison where the suffragists were locked up and tortured.  Since the women were doing sewing work during the day in prison, they think this may have been how they slipped messages out to the media:  by sewing them onto fabric.  Super cool!

The students loved the museum.  They took about a million pictures yesterday in general (part of why it was slow getting around was that students kept pausing to photograph every single thing visible on Capitol Hill), but the Sewall-Belmont House was especially well documented by their iPhone photography.  I certainly hope that this experience makes them all vote on election day!  And I suspect that Marguerite is talking some of them into running for office.

Alison in Washington, DC

After a full day on a bus, I'm now in a hotel in Washington, DC, with 27 of my students.  We're here because CofC is on fall break, and we're going to experience the world of gender and politics.  Most of the students are first year students enrolled in a Learning Community, which means they're in my Intro to Women's and Gender Studies class and in Marguerite Archie-Hudson's American Government class.  We're also lucky enough that several older WGS majors are here, too.

Here's a picture of me with Marguerite, my famous friend.  Marguerite is famous because she was in the California legislature years ago, and while there she made lots of good things happen and also made many good connections (and learned how to continue making good connections).  So while the Women's and Gender Studies office handled the logistics of this trip--getting the funding, the bus, and the hotel rooms--Marguerite did most of the scheduling.  This means that we'll be meeting with people like Congresswoman (and big-time feminist) Eleanor Holmes Norton and Marguerite's good friend Hilda Solis (you know, Secretary of Labor).

It also means that Marguerite has been corresponding with Ruth Bader Ginsburg.  She's on the US Supreme Court, which means she's occupying one of the most significant positions in American government.  She's the second woman (and arguably the first feminist) ever to be a Supreme Court justice, and Marguerite's been corresponding with her.  We're going to the Supreme Court tomorrow morning, and there's the tiniest chance that we'll get to meet Ruth Bader Ginsburg.  Really, the tiniest chance means we're not going to meet her, but I've considered hanging out in the women's restroom to see if she comes in.

We brought her a t-shirt.  I'm not kidding.

More tomorrow, when I'm not completely exhausted.  As a closing point, here's a picture of students I made pose in front of a North Carolina map when we were halfway here.

Another video, because we all want to see Maybelle singing "Feed the Birds"

When she's brushing her teeth here lately, Maybelle has taken to singing "Feed the Birds" from Mary Poppins. This is the sweet lullaby Mary Poppins sings that asks the children to recognize and support vulnerable people who are easy to overlook.  She fills them in on the fact that privileged people, like their father, often "can't see past the nose on their face."

The lyrics Maybelle's singing here are

Though her words are simple and few,
Listen, listen, she's calling to you.
Feed the birds, tuppence a bag,
Tuppence, tuppence, tuppence a bag. 

I was surprised to see that she knew these words, given that she and I haven't sung this song together at all. She's just seen the movie a million times.
"Feed the Birds," 10-9-12 from Alison, Walter, and Maybelle on Vimeo.

Isn't it time for some videos of Maybelle?

You know, it's Down Syndrome Awareness Month, and I'm theoretically taking part in 31 for 21 (see the logo below! That proves I'm a player!). So perhaps over the next few days I'll post some videos of Maybelle, documenting stuff going on in her life.

Maybelle's back to playing the drums these days, and Biffle's teaching her some basic drumming skills--how to cross her arms, how to hit the kick, snare, hi-hat. Here she is demonstrating those skills.  Please note that she's in a bedroom that has a bed, a steamer trunk, a doll house, a trampoline, a drum kit, and to the left, out of sight, a keyboard (that plays the theme to Titanic whenever Maybelle wants it to--yikes). Maybelle's occupational therapist said it's her favorite kid's bedroom (meaning that the bedroom is her favorite, not that Maybelle is her favorite kid--although obviously that's the case. Please.)
Fine drumming, 10-11-12 from Alison, Walter, and Maybelle on Vimeo.

#pkchs

Trey and I went to Pecha Kucha last night.  It's a hipster event for all the cool kids, but they let me in because one of my former students and current WGS Advisory Board members was talking about the Southeast Zine Fest, and I love zines, so I went.  I was sort of a cool kid by proxy.

Pecha Kucha:  A bunch of people do quick presentations, in which they have six minutes to fly through slides on a screen.  They get to talk about whatever they want, which can range from the story of a famous Charleston statue to essentially an extended ad for a new business.  As one of Trey's friends noted, these sorts of events are a mixed bag in small cities, and that was the case.  Some of the presentations were riveting--others inspired Trey and me to turn to our phones for entertainment.

On the Cistern, where the presenters were doing their thing, they had a big screen, and they projected many of the tweets that people were tweeting about the event.  So Trey and I were inspired.  Here's what we tweeted, in order (skipping some of the boring ones):

Trey:  It seems that Holy City Beard & Mustache Society kicks ass. #pkchs

Trey:  OMG SO INSPIRATIONAL (trying to get on the hash tag display board at #pkchs).

Trey:  WTF is up with this MC?  Is he somebody's nephew? #pkchs

Alison:  Pecha Kucha is cool, but, um, y'all, the emcee needs help. #pkchs

Alison:  I HATE shopping, Heather.  I'm totally on board for you making my clothes. #pkchs

Trey:  I like turtles. #pkchs

Alison:  @trey and I are sorry for what we said abt the MC.  We're sure he's a nice guy.  He just needs to introduce speakers quickly. #pkchs

Trey:  Hey, the grownups have to go to bed soon. #pkchs

Trey:  I was told there would be ponies. #pkchs

Trey:  Fuck yeah zines! #pkchs

Alison:  Zinefest is going to be amazing! #pkchs

That was my wild night out on the town.  Margaret and Susan's presentation was obviously great (they seemed quite well-suited to the quick presentation genre:  they had loads of energy, were funny and able to go with the flow, and they knew what they wanted to say).  And this morning I've had several cups of coffee to kick myself into gear.  Trey wasn't kidding in his tweet about the grownups having to go to bed--I didn't get home until after 10!

October

Dancing at the Early Bird Diner

Last night it became fall in Charleston.  As we biked home today, I was wearing a jacket, and Maybelle a sweatshirt.  On their porches, some of our neighbors were snuggled up in what appeared to be down coats.

"It's so cold!" I called out.  They laughed and nodded.

Fall is always a wonderful season, but in Charleston it's particularly wonderful.  Right now it's sixty degrees.  We have our doors and windows open, and I'm drinking a (rare) evening cup of coffee, enjoying how warm the coffee is as cool, rain-scented breezes drift through.  I love how cold it feels, how exciting sixty degrees is after a weekend with highs in the high 80s.  It makes me want to curl up, to bake something, to scratch Gabe's ever-needy neck.

Leaves don't change color here, but fall arrives in dramatic ways nonetheless.

Holy crap do little kids love balloons

 The title is courtesy of Uncle Trey, who took this picture at a pony party Maybelle went to a couple of weekends ago.  This is another 31 for 21 post (really, it'll be more like 20 for 21 I suspect this month, but we'll see).

I don't think I really have to say anything, do I?  I mean, good grief, could anybody be having a better time than Maybelle and her friend in this picture?

George Estreich from The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit

I'm taking part in this year's 31 for 21 once again.  October is Down Syndrome Awareness Month, and although I'm quite scornful of all awareness months (ask us how much Women's and Gender Studies does for Women's History Month:  nothing!  Because we're doing stuff all year!), I do find this blog project to be cool and useful.

So here's a quote from George Estreich's memoir, in response to books that address cloning and genetic mapping and other scientific projects.  This quote happens to relate quite beautifully to my research project:

But the people with Down syndrome don't rate a story; they are not given the human reality that is granted to the author, to other scientists, to hypothetical characters facing reproductive decisions, and even to green-skinned, lung-modified descendants leaving an overcrowded planet.

If our technologies are to benefit people with Down syndrome, then their lives need to become more real to us.  Science can illuminate one part of that reality, and technology can affect it.  But only story can convey it.

Eva Feder Kittay quote from 2011

Still more important [than alterations in the physical environment] is the environment of inclusion:  of welcoming many sorts of bodies and minds, seeing the world as enriched by this diversity, and embracing the possibilities as well as the challenges presented by those who diverge from the norm.

Increasing steps toward integration

Thanks to Claire for telling me to look for this article in the NYTimes today.  It's called "After a Lifetime in Institutions, a Rocky Trail to a Group Home."  The article offers the case study of the process of moving individuals with intellectual disabilities out of a formerly huge state institution in Georgia--Central State Hospital, which was formed in 1842, at one point housed 13,000 people with intellectual disabilities.

13,000 people.  Locked up in an institution because parents were told to lock them up, and because there weren't other sources of support for the families out in the world.

The article tells the story of Wally Burns.  When he was a year or so old, he wasn't doing what other kids did, so his mom took him to a doctor, who pronounced that he'd never sit, walk, or talk.  She proved the doctor wrong, helping her son to learn to walk and speak, but she was the only one providing support for him, and eventually she felt that he was unmanageable and dangerous to himself, so she agreed to go along with the pressure from the doctors and institutionalize him.  As the article says, the eight-year-old boy was "screaming and crying and clinging to her legs."


Stuff like this gives me a sick feeling in a way I guess it wouldn't have, back in my pre-Maybelle life.  I would have felt outrage, but it would have been a more detached outrage--recognizing injustice, but not feeling the impact of it the way I do now.  Burns doesn't have Down syndrome, but doctors have historically given parents patently wrong information about Down syndrome, just as they gave Burns's mom wrong information.  I imagined them pulling a crying Maybelle off of me, and thinking about the world that was in place that would have made me think this was the right decision.  A child who knew who his mother was, and who was expressing his desire to stay with her, being torn away.  The mother believing this was the right decision, because the world was telling her again and again, this is the only thing you can do.  You must do it.

I was surprised to learn that there are so many institutions still in existence (Mississippi has 2000 citizens institutionalized right now), but they're all in the process of being dismantled because the Justice Department "in recent years has threatened legal action against states accused of violating the civil rights of thousands of developmentally disabled people by needlessly segregating them."  This is heartening.  The Americans with Disabilities Act is heartening.

And let me tell you what else is heartening:  the Arc of Macon.  This is the group they focused on that's building and staffing small group homes for former residents of institutions.  The article offered three additional brief stories about residents of Central State moving into Arc of Macon homes, and the stories demonstrated ways in which seeing a person as a person can make a remarkable difference in that person's life.  For instance, one person has autism, and due to stress from the move, was banging his head and doing things like smearing feces on the wall.  All reasons to say that a person is "beyond help," right?  Too much trouble.  Instead, Arc of Mason reported,

They noticed that Mr. Lawson liked the showers they gave him after he had dirtied himself, and that he often opened his mouth to drink the water.  They wondered:  was he acting out, in part, to get into the shower?  So they let him shower several times a day and gave him a buzzer to press whenever he was thirsty.

Ah, he wasn't beyond help--he was communicating, and they paid attention and understood.  Apparently things turned around dramatically for Lawson, who is much more peaceful and goes out into the world now--something he almost never did when he lived in an institution.

I had some problems with the article.  It used some really outmoded rhetoric, for one thing.  It described Burns early on as "severely mentally retarded," and I was like, "Listen, people, we don't use those words anymore!"  Then they described one of his friends twice as "wheelchair-bound."  For those of you who are curious, we now say that someone has an intellectual disability and uses a wheelchair.  I would circle these as errors on student papers, so I'm sorry that the NYTimes editors didn't do the same.

I was pleased, though, that we got to see how wrong Burns's doctor was.  By the end of the article, we read of him dancing to disco, waving when people greet him, and going out every day into the world.

Finally, the story about the Palmetto Invitational

Awhile back I told you that Biffle, Uncle Trey, Maybelle, and I went to the Palmetto Invitational Classic, a fabulous marching band event.  I said that I couldn't tell you about it because I was going to write about it for the Charleston City Paper.  So here's the link to that article, which came out today:

"Confronting segregation in Charleston:  An invitation."

And one other thing completely unrelated to the article.  Maybelle is sleeping late this morning (it's 7:34 and she's still asleep!), and I'm letting her.  I get that as a four year old, she's at the age when I probably need to wake her up if she's not awake in time to get ready for school.  I get that I will probably regret making this choice.

But when was the last time I had a cup of coffee, blogged, and read my friends' blogs alone in the quiet house in the morning?  Let's see, I guess that would be four years ago.  I'm enjoying it.

Dammit

The other day Maybelle and Biffle came by my office at the end of the work day, so that we could bike home together.  As I was holding Maybelle, I asked her to name everybody in the room--a sort of cute and also educational strategy we engage in a lot. 

"Who is here?"  I asked.  I pointed to myself.  "Mama," Maybelle said, then, "Boppa," and "Amber," who works in the office and babysits for Maybelle fairly often.  Then I pointed to Ashley, who's come to our house on multiple occasions.

"Dammit," said Maybelle.

"What?" I asked.  "Her name is Ashley."

"Dammit," Maybelle confirmed.  I got her to repeat the word Ashley, but that seems only to be a friendly nickname we offer.  In Maybelle's mind, the girl's name is somehow inexplicably "Dammit."

Of course, we inadvertently reinforced this misnomer by laughing every time Maybelle identified Ashley that way.  Claire warns that it's cute now, but once she gets to public school, we'll have to be sure Maybelle understands that the teachers there don't find swearing as adorable as we do.

Jawgrind

Please go below and read Biffle's post, "Continuing a long tradition of putting very personal things in public places" (such a true statement about Biffle).

Then come back up here for something much funnier:  I am a guest star on Uncle Trey's podcast, Jawgrind!  It's episode 22, "Respectable Voltage." I was brought on as the feminist expert to comment on the misogyny of "Metamorphosis," an episode from the second season of the original Star Trek.  "Jawgrind" is all about old episodes of Star Trek.  The hosts are full-on nerds:  all computer-based careers, and all white guys.  AND they're all guys I'd like to hang out with (let's be honest, who did I spend my college career with?).

Uncle Trey records the conversations and then edits them, so he does hours of work to make "Jawgrind" happen.  It's pretty cool stuff.  This is a new level of fame for me.