baxter sez

Ear plugs are amazing

2012-02-13T17:05:00.001-05:00

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

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

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

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

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

Perhaps we've turned a corner.

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

2012-02-10T10:28:00.000-05:00

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

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

Re-thinking

2012-02-06T09:24:00.005-05:00

I've been mulling a post concerning re-thinking for...well...forever, I guess. But it's just been too big for me to ever go ahead and put anything down. What am I talking about? I'm talking about re-thinking, I'm talking about taking a look at some given in my life, in your life, in this world. I'm talking about examining some concept walking around and totally accepted as akin-to-the-truth when it's really not...

And already I'm re-thinking writing this post...Like I said, it just seems too big to tackle. Perhaps just a bit crazy. The thing is, excluding playing music, most of the work I do tends be done alone. The upshot is that I'm left alone to have conversations with just myself, and the result is a conversation with no real checks and balances system there to keep it in the realm of sanity. I just get going on some concept, some trope, in my head and before long--let's call it mental inbreeding--those thoughts are wandering around in the void of the impossible. But to me, talking to myself as I am, it all seems perfectly rational.

I wanna show you what I mean by re-thinking with two things + one more thing. The first two are cars and guns. You'll just have to wait to see what the one more thing is. But before I do any of tha, I want to give a simple example of someone else's re-thinking that'll at least show that I'm not totally out there. So, let's take a look at the neck tie. The cravat.

I love a good tie. When I wear one I feel dressed up. I like looking at them all lined up at a clothing store, I like the patterns and the prettiness. But I think they ought to go away. Originally, I suppose, a neck tie was a way to keep ourselves warm, but they've lost any real purpose and are now almost entirely symbolic. But to question the necktie--for instance, to suggest a presidential candidate show up for a televised debate without a tie--is to flirt with something like heresy. That just seems like too much power for a simple piece of silk to have.

But back a few years ago someone in Britain did question the necktie. They conducted a study looking at a connection between doctors, their ties and rates of infection. One hospital was the control: all the doctors wore neckties just like they'd always done. At another hospital the doctors were asked to not wear a tie for something like 6 months. The result was that the tie-free hospital's rate of new infection dropped off by some amazing percentage like 30%. What they found was that ties are waving petri dishes. The wearer would say, sneeze on the tie, or the tie would touch a wound during an examination, etc. and then that same tie would go to a new location/patient carrying along what it had picked up. I don't think doctors in Britain stopped wearing ties as a result of this study, but they should have, don't you think?

Okay: Guns.

Today I can walk out into the world with my telephone and call just about anywhere I want to and not be connected to any wires. I can look at a webpage, get directions somewhere, type an email or find out the price of a avacado. And barring drums and smoke signals, two-way wireless communication is only like a 150 years old. Who would have thought when Marconi and Edison were messing with radio signals that wireless communication would change so much in such a short amount of time?

The Chinese invented gunpowder a thousand some odd years ago. A short while later, someone--in China, or possibly Europe--used this mixture of sulphur, charcoal and saltpeter to push a chunk of lead out of a tube with the sole purpose of messing up someone else's body, most likely to the point of death.

And that's been about it. For 800 years that's what guns have done. Cellphones, they aren't. Guns and their same old function has become an unquestionable piece of our daily existence. Four year olds shoot each other with fingers. When we impersonate Robert Dinero we say you lookin' at me? Guns pervade our consciousness so much that in a land of pure fantasy, like where everybody lives in Harry Potter, all those talented wizards still end up shootin' it out like it was the old west. Except they shoot with a wand. Same goes with The Force in Star Wars. When The Emperor goes to kill Luke how does he do it? He shoots him. He uses his fingers, but still he relies on that one-on-one gun-like approach. I mean, the man's got The friggin' Force--couldn't he just think him dead?

It would seem when you have something as amazing as The Force and all that Harry Potter magic one could just wave a hand and the whole thing would work out. Of course, it wouldn't make for much of a story, so our fantasy worlds stick with the gun thing. And in our real world? Well, we stick with the gun thing, too.

Why haven't we re-thought guns the way we've rethought two-way communication? Oh, sure, we've got bombs and stuff, but that's nothing but a gun with an engine strapped to it. What makes one paradigm so stable and one so malleable? If the gun had changed like the telephone has what would it be like? Why isn't a gun something that...well, something that you point it in any direction and when you pull the trigger, it makes everyone within a hundred miles get really agreeable?

Okay. Cars:

At first cars seemed like a good idea, but I have really come to question the value of these things. No, the car shouldn't disappear, but it needs some serious re-thinking and we just keep on micro-changing it. We've put batteries in them, made them run a little cleaner, but a car is still mostly a thing with 4 wheels and conveys a few people at a time from one place to another. But here's what else cars do: They suck up places where trees and people should be. They create enormous amounts of oily runoff. They make our world very noisy. Cars injure us, make us angry, cost us quite a bit of a week's labor to pay for.

How much real estate/arable land is paved over in order for cars to keep going? How many street lights do we really need? How much tax money is spent on maintaining ten jillion miles of road in this country? How much of our atmosphere must we pollute and water contaminate and silence sacrifice for the automobile? How many chunks of lead must we shoot out of tubes and into other people just to keep that car's parts moving?

Wanna have clean water, good air, no beef with the middle east, no more 9/11's, whole neighborhoods back, more efficient local governments, lots more green space, the end of road rage, no more 2 hour commutes, no traffic jams, less death (500,000 americans in ten years!), fewer taxes, and the ability to see the fantastically beautiful night sky again in one fell swoop?

We really gotta rethink the car.

* * *

Yes, I know. I'm being silly. That's not the way the world works. But I think it would be nice if it did. I think it would be great if we could just jump paradigms as easily as skipping a rope. The + one more thing i wrote of up above is the notion of re-thinking what we teach in primary school. Realistically--and I'm not being silly here--I think we ought to be teaching a lot more critical thinking skills. Everyone should be able to read, write and know world history. And we know that as students grow to adulthood they'll gravitate toward whatever field interests them--whether its economics or the law or automobile design or automobile repair or woodworking. But where ever one's proclivities eventually take them, I think every student should be graduating the sixth grade with a degree in creative thought. The Status Quo should be a laughable notion to them.

Instead, most of our schools--all of our public schools--are becoming jails, daycares and places devoid of music, art and the concept of craft. That should not be the case. All silliness aside, if there's one place that needs to be radically rethought it's the education an American kid gets between the ages of 6 and 12. If we could wave a peaceful Harry Potter wand over elementary education and have there be as much interest in teachers as in American Idol, and have a kid learn what it means to really see the object they're drawing, recognize the way certain intervals in music vibrate in harmonious and gloriously inharmonious ways, embrace oddity, understand the power and subtlety of language...

You may say that I'm a dreamer :) but I gotta tell you, I think if we could make our children critical thinkers instead of Memorizers-of-the-Pledge of Allegiance or On-Their-Way-to-College, come 2030 or so, when those kids run the world, they'd take a look at ecological damage and poverty and inflation and warfare and they'd just step back and thoughtfully say, yeah, I think we can make this work....

What Does the "Radical Left Wing" Look Like?

2012-01-31T18:39:00.009-05:00

TAMPA, Fla. – Newt Gingrich laid a stark attack on his rival in the run-up to Florida's "winner-take-all" Republican presidential primary Tuesday, accusing Mitt Romney of being no different than President Obama and suggesting the front-runner will be a threat to religious freedom.

Although I open this post with a tiny example of the dubious journalistic practices of Fox News, that's not what this post's about. I just wanted to put it in here because the above inspired what you'll find below....

Oh...Don't know my problem with the above? Well, it's that nothing in that paragraph is in quotes. For instance, it might read

...accusing Mitt Romney of "being no different than President Obama" and suggesting the front-runner "will be a threat to religious freedoms," Newt Gingrich...

But it doesn't. Instead, with its lack of quotation marks, the paragraph incidentally identifies Obama as an actual threat to religious freedom.

You still don't get it? Shoot me an email and I'll try harder.

Okay. So Fox does this kind of crap all the time. And, for me, that's a small sample of the evil the right wing is capable of. Another sample might be the bunch--when you get far enough over there--that forms militias, living in the wilds of a mid-western state, toting machine guns and trying to protect themselves from the "black threat." Or the folks that believe there really is something such as a "welfare queen."

Newt Gingrich appears to be hateful, self-serving and totalitarian. That he has been so successful has only exposed the belief that paranoia and hatred are considered virtues among some folks in our country.

So, where I want to go with all this is: what is the equivalent with the left? What do you find when you really get to the far-out fringes of those elitist, liberal lefties? Folks in communes, living in the wilds of Tennessee, toting machine guns and trying to protect themselves from the threat of commerce?

...well, yeah. But, that's not quite as scary is it?

See, if the far left really took over the country--the really, really radical mothers, mind you--how bad could it be? Mandated vegetarianism? Every single one of us got good health care? No one ever got to be a millionaire? Nightly singings of Kumbaya (which happens to be Gullah for "come by here," by the way)?

Whether misguided, idealistic, elite, unrealistic, bad for business, goofy, or new-agey, the far left as I understand it just doesn't embrace hate and war-mongering, fear and isolationism like the right can.

In short, if I had to die fighting (or passively striving) for a wrong-headed ethos, I hope it's for the one that thinks we might all could get along or have a chance at equitable fulfillment.

Oxygen mask

2012-01-30T19:42:00.000-05:00

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.

Yes, It Really Does Matter to Me

2012-01-27T10:33:00.002-05:00

I'm not going to try to make this a coherent post, so just try and hang in there with me...

I tend to avoid the news. It gets me a little worked up. I get some info from my Google news widget, but other than that I try to avoid it. I'm happier that way. However, every four years i get sucked into what has turned into the endless campaign for president.

And then I get really worked up.

Here's why: When I look back at some of the things I was taught at the school I attended--the same private school for 12 years--it makes me a little upset even to this day. I was taught things like Gay is Bad, Being Different is Bad, Race Doesn't Exist (since there were no ethnicities at my school other than flat out white), Women Belong in the Home, Abortion is a Sin, Sex is Evil, America is a Christian Nation, and so forth.

I get worked up over this presidential elections stuff because it seem like the Republican Party went to the same school I did, but just hasn't bothered to look into any of the crap they were taught and see if the information was good or not. One of the things that annoys me most is the GOP's apparent love of ignorance. George W. Bush really set a precedent in this category, i.e. he really made the conservatives of middle-America latch onto their dislike of thoughtful consideration (one of the lessons of Different is Bad, btw.) It makes my blood boil a little even to this day when I think of the time Bush sneered when John Kerry had the temerity to say the word "nuance."

So what's got me going about this was one of the things on that Google news widget (which I think I probably should get rid of) I read this morning. Here it is:

In a CNN debate, Gingrich pushed back at anchor John King when King questioned him about an interview Gingrich’s second wife, Marianne, had given ABC News. In the interview, Marianne Gingrich suggested her husband had asked her for an open marriage so he could carry on with a mistress, Callista Bisek, now his third wife.

“I think the destructive, vicious, negative nature of much of the news media makes it harder to govern this country, harder to attract decent people to run for public office. And I am appalled that you would begin a presidential debate on a topic like that,” Gingrich said. “I am tired of the elite media protecting Barack Obama by attacking Republicans.”

The "nuance" that's in Gingrich's response is out of this world. First, lemme say I don't care what kind of sex Newt Gingrich has. His sex life is his own and as long as he doesn't harm someone or is involved with someone (or something) without agency, he's allowed to do as he likes. Of course, he nor his political affiliation feel this way. That's why his first bit of nuance is found in him not having answered the question. The second bit is a move he took from George W.'s playbook and elided liberalism, "the media," and evilness, and placed himself in the holy, "other" category. Third, he established that a presidential debate (and thereby politics) is something precious and pure. Fourth, he again sites his mash-up of liberalism/media/evilness, points it all at Barack Obama, and re-asserts his affiliation with the holy side (Republicans).

The most annoying thing about this answer for me is a phrase I just can't wait to go away: elite media. What the hell is that, this elite media? I've got a sound file on my computer in which I A/B 10 minutes of broadcast news from NPR and a Rush Limbaugh show. I had to try it several times because the first few times I recorded Rush's show it was ten minutes of commercials. Anyway, when I hear this elite media phrase from a conservative it conjures up NPR. I figure that's kind of the synecdoche the speaker is trying to place in their non-thinking listener's brain. What's really happening, of course, is elite media simply means anyone that doesn't agree with us. I mean, after all, Newt Gingrich himself has been employed by Fox News for several years now. Surely he doesn't mean Fox?

So anyway, this elite media phrase got me looking at some random stuff which I will now convey for your perusal with no other interruption from me. Make your own connections.

Here are the Alma Maters of some prominent members of George Bush's administration:

George Bush: Yale

Robert Gates: Georgetown

Dick Cheney: Yale

John Ashcroft: Yale

Tom Ridge: Harvard

Michael Chertoff: Harvard

Here are the Alma Maters of some well-known conservative pundits:

Glenn Beck: Sehome High School (didn't graduate)

Sean Hannity: Adelphi University

Rush Limbaugh: Cape Girardeau High School (didn't graduate)

Bill O'Reilly: Harvard

Tucker Carlson: Trinity College

Here are some currently (or very recently) active Republican figures that also are paid commentators for Fox News Broadcasting (there are no Democratic figures that are paid commentators on Fox News):

Newt Gingrich

Karl Rove

Sarah Palin

Mike Huckabee

Here is the net worth of some of the people above (all in millions):

Donald Rumsfeld: 200

Dick Cheney: 80

John Ashcroft: 3

George Bush: 26

Ron Paul: 5

Rush Limbaugh: 300

Glenn Beck: 85

John Boehner: 2

Newt Gingrich: 6.5

Karl Rove: 6.5

Rick Santorum: 2.5

Craigslist, Money Man Pawn, the GOP and Misrepresentation

2012-01-23T08:56:00.010-05:00

I was a little boy in the early seventies when a staple of women's fashion was large, tacky necklaces. I remember sitting on my Mama's lap in church and playing with her large and tacky necklaces as a way to occupy myself while a preacher talked about heaven and hell and virgin birth. I don't know why, but I was always a little obsessed with whether the stones in her necklaces were "real" or not. I'd say Mama, is this a real diamond? and she'd say No, darling as if wearing a large rock around your neck--a large rock of one kind pretending to be a rock of another kind--was no big deal. But it was a big deal. I didn't know the word at the time, but i do now: It was disingenuous. I mean, Mama wasn't being disingenuous; she was just following fashion. But for some reason it really bugged me.

So many things that people seem so concerned about--like sexual orientation or smoking pot or that America is a Christian nation--don't matter a hill of beans to me. What does matter to me, though, is whether the stone is real. Is honor. Is telling the truth. Is a concept so old fashioned it hasn't even kept up with gender: a man's word. For me, to be disingenuous, to misrepresent one's self or some thing, is the unpardonable sin. Even if it's just some fake rock in a necklace.

Okay. Craigslist first:

A guy named Craig Newmark started the website we now know as Craigslist in 1995. It was--and is--a sort of internet garage sale. Anyone with a computer and the ability to type a few words can use it to sell something or barter a service or find a drummer for their band. It's free and always has been. It's also the largest classified listing in the entire world. It has--get this--20 billion page views per month. It is, to generalize a bit, one of the most successful businesses in the entire world. But do you know what Craigslist's CEO Jim Buckmaster said to Wall Street a few years ago? He told them that Craigslist has little interest in maximizing profit, but instead prefers to help users find cars, apartments, jobs and dates.

I don't wanna go on and on about it--and believe me, i could--but i respect the folks at Craigslist so much. If they wanted, they could sell that site for billions of dollars. But they don't. Instead, they pay themselves well and provide a really great community service. In exchange, they ask us to behave ourselves when using their site. They ask that businesses advertise in the business section. They ask for users to not "over-post" or misrepresent themselves. They exert no real manner of force to impose these requests, instead asking its community of users to police themselves with a system of "flagging" the listings that ignore these requests.

Bob Dylan sang "to live outside the law you must be honest." I ascribe to this. So, quixotically, it's also why I would never abuse a non-compulsory list of rules like those of Craigslist. You see, It's one thing to kick open someone's door and steal their television, but it's another to tell them you're there to fix the plumbing and take the tv when they're not looking. The first one just makes one a low-down thief, but the second makes one disingenuous. Hey man, steal my tv, but don't lie to me about it. So, for me, it is the worst kind of crime to abuse something honest like Craigslist.

It upsets me then that here in Charleston the "tools" and the "materials" section of C.L. are crammed full of a couple of businesses lying about stealing your tv. The most egregious offender is a chain of pawn shops called Money Man Pawn. Not only do they misuse the service as a place to advertise their stuff for sale, but they also use multiple--nay, hundreds--of listings to do it. They are aware of their crime, too. The website has a built-in protection feature that spots similar ads. Money Man gets around this by slightly altering each one. So one ad will say "call Randall at 843-737-5323!" and another will say "call Betty at 843+737+5323!"

In short what we have here is a business in the business of waiting until times are so hard that you take your not-as-yet stolen television to them in order to get a few bucks to pay the rent. They give you a 1/3 of the value of your television and then require you to pay them an interest rate that amounts to 2 or 300% a month which you can't afford, thereby losing your tv, which they then try to sell for a few dollars less than what you paid for it new.

Okay. So be it. I mean, that's the way a pawn shop works. If you don't want a haircut, don't hang around the barbershop. As business practices go, pawn brokers may be scraping the bottom of the barrel but it doesn't mean they're thieves.

So Money Man Pawn isn't a thief. Its much, much worse. Money Man Pawn is disingenuous. They misrepresent themselves. First, they post on a site that specifically asks them nicely not to and then make it difficult for the community to flag them by using multiple posts. But to top it all off, they commit the unpardonable sin of actually pretending to be someone else.

No, I'm not Money Man Pawn. I'm just some dude named Randall, rhymes with handle, tryin' to sell a tv.

Well, Randall, you're not just some dude. You're a turd. A boil on the ass of humanity. I spoke with the devil this morning and he told me that yes, indeed, there is a special place in hell for people like you.

Okay. So maybe this kind of thing doesn't upset you as much as it does me. I recognize I'm a little over the top here. But here's the deal: You know how it feels like a real honor when a friend trusts you with their house keys? We should all aspire to be people that are trusted with each other's house keys. An irony here is that Randall can't be trusted with the simple honor system, and Craig Newmark, who could have a billion dollars in his bank account tomorrow chooses not to maximize profits but help people find a date. You know, Randall--the real one and not the cartoon one I've kind of created here--is probably a good guy. Someone probably loves him. Like George Bush, he's probably pretty fun to hang out with. But still, if we impose my system of ethics here, Randall is willing to risk his immortal soul over a Cordless Bosch drill.

It begs the question: If he's willing to do something like that for 29.95, what's someone willing to do for 29 million?

Which brings me to this: Which GOP candidate would you trust with your house keys?

What about a man named Mitt Romney who's made a living by taking yours away? Or a fellow named Newt Gingrich (Newt Gingrich!?) who professes his love of Jesus Christ while sticking his weeny in any hole available? How about Rick Santorum, a sanctimonious hater of many of God's creations?

Lord have mercy.

Here's the deal: I fear and dislike misrepresentation and dishonesty and disingenuousness so much because I recognize it in myself. I spot it 'cause I got it. Perhaps I'm so angry at Randall because I wish i could do what he's doing and not feel bad about it. But i do feel bad about it, so I don't do it....

But...what if i didn't feel bad about it? How bad could I be? What if it were me that owned Craigslist? Maybe I'd sell it for a million billion dollars.

What else would I do--me and my million billions--if I were to just drop this whole honor thing?

I might try to get some naive, greedy soul like me to start a foundation with a disingenuous name like Citizens United. It wouldn't represent citizens at all. It's sole purpose would be for me to use my money to influence political decisions to go in my favor and thereby get me more money. Me and a few other disingenuous people, say, me and Rupert Murdoch and Dick Cheney and Glenn Beck, would combine our money and influence and have our crooked organization called Citizens United file a case with the Supreme Court of United Sates. We would be so powerful that even in that institution--which holds the notion of justice for all people so dear--we could sway opinion in our direction. Well, at least 5 out of the 9, anyway.

We'd get something as nasty as a corporation--a thing that heats it's home by burning human beings--recognized as...drumroll!.. a human being! What brilliance! It'd be nothing but a business but it would pretend to be something else! Then we'd diversify our holdings. Me and Rupert and Randall and Glenn and Dick would already have the Supreme Court. Next we'd get the Presidency!

We'd get people that are really good at acting like they have other people's best interest in mind but really don't to be GOP presidential candidates. Yeah! You know, like people that are willing to hate your gay friend, or are willing to take their brother's job away without thinking twice, or are able to get an erection for their mistress while their own wife lays dying in a hospital. Then we'll use this corporation-as-people shit to put all of our money--and here's the really brilliant part--on every single one of the candidates! That way we couldn't lose! No one will know where the money's coming from!

Everyone would just suspect that the average American is so concerned about who their president is that they're willing to give over a billion dollars of their money getting them elected. Never mind that's more than 3 dollars for every living person in the U.S. and that only 50% of the eligible population actually votes. People are stupid. They would never suspect that all that money eventually has to be exchanged for favors or that just a couple of guys are responsible for it all. I've heard the human brain is incapable of truly understanding what quantities over a couple dozen actually mean, even if it's a group of things they're familiar with. Sure they've heard of a billion dollars, they've heard that it would take someone like Randall and 590 of his friends to combine all the money they make in their lifetime to actually come up with a billion, but they don't really understand it. Plus they have no concept at all of what it is to be mega-rich. Have no idea at all how powerful it actually makes you...

Anyway, then what we'd do is use Rupert's media empire to force every other news outlet in the world into representing the noble hope of being president as something as exciting as Monday Night Football. We'd turn this 40 year old notion of extended presidential primaries into a behemoth enterprise. Rupert would pocket millions as people constantly tune into to see which team is ahead. Early on we'd use each of the candidates to test market a combination of different loves and hates: hate for gay people and love of capitalism and freedom, hate for taxes but love of war and imperialism, hate of war and taxes and same-sex marriage but love of gay people divorce and capitalism. We'd watch to see how much hate can we actually get away with. You know, tell Santorum to say something incendiary about lesbians and see how it plays. Have Newt make a not-so-subtle racist comment about food stamps. When it looks like we've gone too far we could just manipulate the stories or give the candidate enough money to wait til the smoke clears and keep them in the race. It would be important to keep as many voices in there as long as possible so as to get the best information. That way, when it's actually time to run our guy for president, we'll have the perfect demographic survey. We'll be able to create the ideal candidate never minding what the sucker might actually believe in....bwah ha ha!

and we.

will be.

in.

total.

control...

bwah ha ha! Bwah ha ha ha!

...but, you know, there's really no way I could ever do anything like that. I can't even cheat on Craigslist.

39 years of Roe v. Wade

2012-01-22T15:27:00.002-05:00

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

2012-01-21T20:00:00.000-05:00

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

2012-01-15T20:20:00.001-05:00

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

2012-01-15T16:37:00.000-05:00

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

2012-01-10T12:04:00.002-05:00

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

2012-01-06T06:18:00.000-05:00

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

2012-01-04T20:29:00.002-05:00

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.

Hey, it's good to be back home again

2011-12-31T10:16:00.000-05:00

Yesterday Uncle Trey, Maybelle, and I made the drive from Cookeville, TN, to Charleston, SC. It's an eight hour drive, which can be a challenge for a three year old.

Guess how many stops we had to make.

Biffle generously guessed 25. A little hyperbolic, but could have been within the right range.

But this time the answer is one.

In some tiny town in North Carolina we stopped for lunch at a Waffle House. A tangent: I recognize that it's a bit odd that I could document a month of good times through stories of Waffle House. Trey asked how often we eat at Waffle House during our regular lives, and I said once a week, on average. I get that this is a little much for most folks, but, you know, Maybelle seriously loves her some Waffle House. And she charms the pants off every Waffle House server she's ever interacted with. Her gleeful request for a waffle, and then her hands-in-the-air delight when the waffle arrives--well, that's a high point on the Waffle House shift. I see it once a week on average, and it's a delight for me, too.

At any rate, we made just one stop, and got back to Charleston with such ease that it was sort of astonishing. Maybelle watched two videos on the computer, and she read books, listened to her playlist, sang songs, and whined a minimal amount. Didn't nap at all, and was still easy to get along with.

Trey and I had a series of good conversations, and I got to listen to his podcast, Jawgrind, for the first time ever. If you are a sweet human being with a love of nerds and dedication to Star Trek, you should check out this podcast. I know this applies to several of you reading this blog.

It's now Saturday morning. Not yet 2012, but officially new year's weekend, so we're celebrating. In just a few minutes we're headed out to the beach (because, you know, late December weather in Charleston is 65 degrees), and we're going to soak in every minute of our time together. We'll try to convince Uncle Trey to stay here longer than he was planning to. Strategies: beach time! Biscuits and ham for breakfast! Some sort of fabulous Charleston lunch! Sherlock Holmes tonight on the big screen tv! Hugs from the naked Maybelle! Etc.

I'll let you know how it goes.

More fun stuff

2011-12-29T15:49:00.000-05:00

Here's Maybelle having lunch at one of her two favorite restaurants. Waffle House was yesterday. Today was Cracker Barrel, where she snarfed an entire pancake and a whole bottle of syrup--and remarkably had none on her shirt at the end of the meal.

Here she's enjoying our morning exploring the historic train cars at the Cookeville Depot. These were new to me--we got to go inside three separate train cars, sit on things, climb up, look through windows, and say, "Toot toot!" to our hearts' content.

Other fun things:

The weather is perfect winter: sunny, blue skies, and cold (but not too cold).
I finished a book that I was reading just for pleasure.
I've now eaten three Ralph's butter twists.
I have a wonderful mother who was willing to stay up with Maybelle last night. After mom and I had tag-teamed three hours of lying in bed with an energetically awake Maybelle (7:30-10:30 pm), I let Maybelle come downstairs. By 11:30 I was too tired to stay awake any longer. Maybelle? Raring to go. So mom stayed up with her, until she finally fell asleep at 1:00 am.

And I'll end with what I find to be a very satisfying picture of Gabe and her cousin e.v. running together.

A bit of the back story

2011-12-28T10:11:00.000-05:00

I'm sharing lots of upbeat holiday stories here, and I'm doing so intentionally. There actually are a lot of ridiculously fun things going on here over the last week--at my parents' house, in my travels with Maybelle and Biffle--and I want to be consciously aware of them. I'm making an effort to pay attention to these hilarious, or pleasant, or comfortable moments.

I realize, though, that reading this series of posts, someone might be led to believe that my holiday break is nothing but delirious happiness. In fact, if I read these posts, I might well think, "Damn, am I the only person having a hard time over the holidays?"

So here's some of the back story: the holidays are rough for me. And I know they're rough for a lot of my friends, too. This is a time for some pretty painful anniversaries--my own anniversary of the seizure that led to the diagnosis of my brain tumor, a best friend's anniversary of her father's death. Right now one of my in-laws is experiencing a medical crisis significant enough that they're probably approaching this as their last Christmas together. That's pretty triggering to me. I'm so, so sad for their family, but I've also had to keep my distance because it's too easy for me to get caught up in the "that could be us!" whirlpool of thought.

I know from other close friends that the holidays are rough even if there's not a life-threatening event or a painful anniversary. One friend said, "My depression is lurking but not yet rearing. Tomorrow may not be so good." My mom shared that in many past holidays, she hasn't realized how anxious she was until her stomach started hurting physically--that this was a normative part of the holiday experience for her.

I've had some core ideas in place this holiday that I've been trying to keep in use:

My self-care is my top priority.
It's all experimental.
It's okay to go with the flow.
Pay attention to how I'm feeling.
Keep expectations minimal: one or two goals a day.
Pay attention to the moments of pleasure.

That last one has been the motivator for nearly a month of blog posts. Things are just fine. And I'm working hard, with lots of support from people I love. So that's a bit of the back story here in Biffle-Piepmeier land.

Random good-time holiday stuff

2011-12-26T09:21:00.000-05:00

My parents' house has been full of people this holiday season, so my dad declared that we were all going to use plastic cups with our names on them (and therefore avoid the dishwasher being continually full of everybody's 27 dirty glasses). He put out a stack of cups and a Sharpie.

Well, as it turns out*, my brother Trey is a talented cartoonist, so he decorated everybody's cup. Here, for instance, is a cup that nobody labeled. The cowboy here says, "Ahm an outlaw what has no label."

Here, on Mary's cup, Wolverine explains, "I'm the best there is at eating nog." On the right side, his claws are snicking out, but I couldn't get them in the picture.

Trey's cup shows an unnamed person who seems to me to be a past (shaved) version of Trey, grouchily proclaiming, "This is not coffee." There were obviously many others, including Spock saying, "This beverage is not logical," and Watson (on my mug) saying, "This bev is elementary." We even had an appearance by David Bowie from Labyrinth saying, "You remind me of the babe."

*Completely unrelated to the cups is our realization this holiday that "as it turns out" is a great time-buyer if you're trying to make up a story. If someone says, "Aaron, tell us a great joke about a sweet potato," then his best bet is to start by saying, "Well, as it turns out..."

Dance party

2011-12-24T08:08:00.000-05:00

The Piepmeier bunch went to Catherine's family's house last night, and after we ate a large quantity of Sarah's homemade cookies (and ONE store-bought cookie, which we had to identify--very challenging), we spent quite a while dancing to Michael Jackson songs.

Let me tell you, I take this stuff seriously, as this picture taken by Trey will document. I was quite sweaty after each round. I'm not one of these Wii dance competitors who just moves my right arm. No, I am putting my entire body into the dance. Because I love a dance party.

Catherine does, too. In fact, all of us had a really great time.

Hanging with the nerd herd

2011-12-23T17:41:00.000-05:00

Here was a fun holiday afternoon: hanging out in a coffee shop and meeting up with friends, family, and family and friends of the friends and family. We drank coffee, ate cupcakes, and played telephone pictionary, which included clues like, "Wet boobs and a laptop computer" and "Princess Leia shooting a rectangle."

One of my big goals for this holiday is to go with the flow, to let go of my habit of scheduling and planning and just see what happens. This afternoon was a great example of that.

Holiday high points

2011-12-22T20:03:00.000-05:00

One of my top priorities for this holiday was having what is indisputably the world's best donut.

Let me make sure you all got that: the world's best donut.

A lot of people and businesses in the world have opinions about donuts. People love the hot donuts at Krispy Kreme (those are tasty), and some Northerners swear by Dunkin Donuts. People get weepy over various apple fritters, donuts filled with all kinds of things, etc. That's fine. But they're wrong. Because the world's best donut is a fresh butter twist made at Ralph's Donuts in Cookeville, TN.

Ralph's has been in operation in Cookeville forever. Or, you know, since my parents were in college. Now it's unfortunately not open for 24 hours a day, but it used to be that you could go there on Sunday at 2 in the morning, getting yourself geared up for Monday morning classes by drinking coffee, talking with some of the old timers, and eating a butter twist. I'll make the off the cuff estimate that I spent 20% of my nights in college at Ralph's--a lot of high school, too, but maybe not as much.

So I love and value the Ralph's experience. But even beyond the excellent experience of being there, the donut itself is fantastic. Crispy but not greasy fried on the outside, and the glazing gets all caught up in the twisty part. It really is a funky twist, not just a twirl--they actually turn the donut sort of inside out to give it its shape. The inside is delicious and doughy, but not like a regular donut, where you're thinking, "Good grief, there's so little glaze for so much tasteless white bread!" There's the perfect ratio of glaze to bread in a Ralph's butter twist. And it's real yeasty bread, unlike the Krispy Kremes, where you sort of feel like you're eating greasy air, and then you realize you've eaten too many and you feel sick.

If I had to make a list of the best fried bread deserts, they would be
1. Ralph's butter twist
2. Malasadas from New Bedford, MA (can't remember the name of the restaurant).
3. Funnel cakes from a county fair (really any county fair)

We took Maybelle last night, our first night in Cookeville. Let's say that she didn't yet love the butter twist itself, but she seemed to enjoy the Ralph's experience very much.

Gatlinburg

2011-12-21T05:41:00.000-05:00

I'll give you more information once we've had a bit more time here, but let me say this: There is a pancake house every 15 feet in Gatlinburg, but they all close at 3pm. We arrived in Gatlinburg around 5, having promised a hungry Maybelle that she was going to get pancakes for dinner. She was eager to get out of the car, desperate for a pancake, and we drove and drove and drove.

By 6 we'd made it to Pigeon Forge, which had a Cracker Barrel--halleluia, they serve pancakes all day. So that was our first meal in Gatlinburg.

Then we came back to our hotel room and tried to get Maybelle to go to sleep. By 9 she finally had done so. Now it's early morning, and I'm sitting in the hotel bathroom, blogging a bit in private so that I won't wake Maybelle up.

Our drive yesterday was a lot of fun. I'm not sure yet how to assess this hotel time with a toddler. In a few minutes the free continental breakfast bar downstairs will open, and I'll go get some coffee. That will help me achieve some clarity.

Holiday updates and one interesting article

2011-12-20T06:04:00.001-05:00

I've fallen off on my regular holiday happiness posts, in part because we've been making it through the flu here in our household. After one night of vomiting every 45 minutes and two days of pretty much lying in bed all day, Maybelle is almost back to her normal, curious, energetic self.

I suspect you'll be getting some happy posts from us over the next few days, because the holiday vacation officially starts today! We're headed to Gatlinburg, home of unbelievable holiday tackiness, a space needle, and a pancake house about every fifteen feet. Oh, and the Great Smoky Mountains, too, but it's actually the tackiness we're going for. Then we're headed to middle Tennessee to hook up with all Maybelle's grandparents and aunts and uncles.

Speaking of which, here's an interesting article that Feministing pointed me to. Its main point is

Backing up a child who doesn’t want to be kissed or hugged does not mean that Grandma, or Great Aunt Edna, or Uncle Bob or Cousin Sara are doing anything wrong, but it does demonstrate that touch and play for affection or fun is your child’s choice in all situations.

Biffle and I have been intuitively doing this with Maybelle all along. We ask if we can have a kiss, and if she says no, that's totally legitimate. Our families have respected this, as well. I think it's incredibly important that Maybelle learns that it's her body.

I've also given her some information that's perhaps confusing--the other day, when she was fluish and lashed out at me, I said, "Maybelle, you don't hit people unless you really, really need to." I guess we'll have to talk later about what "really, really need to" might mean.

End of the semester = fun day

2011-12-16T06:16:00.001-05:00

Yesterday Biffle and I had a date. We went out to lunch at Husk, one of the restaurants that makes Charleston a place people visit (Bon Appetit restaurant of the year, etc). It's fantastic. Every bite we took was noteworthy. I won't be like the NYTimes food writer who said things like, "The dish managed to evoke the marshy salinity of the air that rises off the flats of the Cooper River at low tide, as dogs run into the water below the Carolina Yacht Club." As I read the NYTimes piece hanging on the wall at Husk, I observed to Biffle, "If one of my students wrote something like this, I'd say, 'Scale back the drama!'"

At any rate, there's our empty table. We had fresh bread with pork butter (nothing better than pork fat to make butter even more delicious), fried green tomatoes, pimiento cheese and ham on toast, greens, fried bologna, and a huge incredibly fresh salad. Here's what I'd write if I were reviewing Husk for the NYTimes: "The fried bologna was so good even Jim Biffle would have liked it." This is quite the compliment, given that Biffle's dad Jim is the kind of guy who has eaten fried bologna on a regular basis throughout his Southern childhood and adulthood.

If Jim Biffle were reviewing Husk for the NYTimes, he'd say, "That bologna was so good it made my tongue slap my brains out."

I don't think Jim would have liked the pimiento cheese.

Last night we went to the Festival of Lights at James Island County Park. Like Husk restaurant, this is one of those things that is worth doing if you come to Charleston. It's this phenomenon of one billion lights hung up in a park, so you can drive through this three mile light show, and you can also walk around, visit Santa, hear a horn quartet playing carols, and ride a carousel. This year Maybelle was big enough that we did, in fact, get out and walk around.

Here's my advice for those of you who haven't yet visited: the marshmallows are really big. If you get a marshmallow stick, burn all the marshmallows to delicious smithereens at one of the fire pits, and eat them all yourself, you're probably going to feel a little sick.

I'm a feminist because...

2011-12-14T05:46:00.000-05:00

Please go visit a tumblr that two of my students created. It's fantastic. They've been a bit astonished at how much attention it's gotten in the 30 hours its been online, but when you go over, you'll see why: it's interesting, the photography is stunning, and the explanations of feminism are smart and clever.

Let me just say right now, I want in!

Party

2011-12-13T05:50:00.002-05:00

We had a great time Sunday night at the DSAL Holiday Party. Here are Maybelle and I dancing together to Toni Basil's "Mickey," the song that is currently one of Maybelle's top three for dancing. The dancing was such an attraction to her that the second we walked into the room where the party was being held, Maybelle ran to the dance floor, and that was it. And you know me, I love a dance party!

And here she's getting her present from Santa. She was a bit terrified of Santa when he came in the room, loudly "Ho ho ho"-ing into the microphone, but when all the other kids went running to see him, so did she. "It's the abject," I said to Walter as I got up to follow her. "She's repelled, but she has to see." This year, for the first time, she seemed to fully understand the notion that the present was hers and that she got to open it.

One of my DSAL/blog friends took these pictures, and now they're on Facebook. I'm still not sure I understand how Facebook works, but if you're my friend and go to my homepage, I think all the pictures from the party that feature me are part of my Facebook photo album. Or something. Thanks, Michelle!

Sherlock

2011-12-10T06:41:00.001-05:00

Here's something else I'm grateful for: recommendations for excellent tv watching. Cate suggested that Biffle and I have a look at a fairly new BBC series called Sherlock. It's a telling of the Sherlock Holmes stories set in contemporary London, but with many many of the other details of the Holmes universe intact.

The back story: Biffle has an almost pathological love for Sherlock Holmes. He has a volume of all Arthur Conan Doyle's writings which he's had since his early teen years. The thing is literally falling apart, and has his marginalia throughout. He rereads the whole book probably once a year, and has quite the memory for the details of the Sherlock Holmes universe.

And my back story: I like adventure-ish tv shows and movies that feature two smart guys who are working together and also kind of flirting with each other.

So we watched the first episode last night and both loved it. They make clever use of technology: often Holmes's observations are typed on the screen (he sees the word "Rache" scratched into the floor and the German definition of the word pops up for a moment), and he constantly uses text messaging. The whole show was exciting, even if (as in the case of Biffle) you have the entire Holmes universe memorized. They know that many in their audience will have read the Doyle stories repeatedly, so they offered playful references for those folks.

Here's the bummer: there aren't a million more episodes for us to download. The first year has, like, three episodes. Then we, along with everybody else who's discovered this series, will have to wait for the BBC to release series 2.

Final exam

2011-12-08T13:10:00.000-05:00

I'm sitting in a classroom, answering emails and taking care of scheduling matters while students sit in rows in front of me, taking a final exam.

This is my little bit of gratitude for the day: I'm grateful to be giving a final exam rather than taking one. I do have to grade them, but grading them isn't stressful, and it doesn't require loads of late-night studying ahead of time. I'm definitely busy this time of year, but it's easier being a professor right now than being a student.

Feminist gang in the office

2011-12-07T11:09:00.001-05:00

See below for info on this picture.

We have quite the community of feminist icons in the Women's and Gender Studies office at the College of Charleston. Some of them are actual empowered-woman-icons on their own, without reinterpretation needed--Rosie the Riveter and Princess Leia would be two examples. Others have experienced paradigm shifts as they've become part of the WGS community.

Darth Tater's lightsaber has become a placard on which he proudly displays "This is what a FEMINIST looks like" stickers, and Han Solo has discovered that his sexual orientation is more fluid than he'd realized, as he's had meaningful relationships with Darth Tater and Becky--and now Princess Leia has arrived and is making things more complicated for him.

Becky--a Barbie doll who uses a wheelchair--has become a feminist disability activist, carrying signs and sporting a funky short haircut. In fact, she's also now wearing Dutch shoes, a gift from a master's student from Amsterdam who's been studying masculinity at CofC this semester.

All these folks have been gifts, and they often experience paradigm shifts while I'm not around. Many of the WGS students feel comfortable rearranging these folks and having a say in the activist messages they should proclaim. I'm grateful that when you walk in the door to the WGS office, this is the community you meet.

And thank you to Trey for the Princess Leia bobblehead!

And thank you to my student Hannah for taking this great picture of the office gang! The previous picture--a terrible one, taken with my cell phone, can be found here.

A brief gratitude post

2011-12-06T20:44:00.000-05:00

I find I'm feeling fairly unpleasant toward the holidays this year. Driving home today from a visit with my neuro-oncologist at Duke, I decided that I'd like to put a little energy into acknowledging the things I'm grateful for.

So let's start here: the visit with Jim, my neuro-oncologist, went quite well, and I'm grateful for him. He's a good guy who's clear, speaks to me as a human being, and comes into the meeting room carrying nothing. He just sits in a chair and talks to me--no flipping through the chart. He doesn't expect me to sit in the exam chair, and he's fine with us arranging the room in weird ways (for instance, Catherine sat in the exam chair today so that I didn't have to). He also answers my emails and phone calls.

I'm also grateful for Catherine, who accompanied me on the trip. Check out the presents she managed to squeeze into her luggage and bring in honor of my birthday (even though we'd decided we don't do birthday presents anymore)! There are too many good things to say about Catherine for me to fit them in a blog post, so let me just acknowledge that I'm grateful.

Tomorrow I think I'll show you an updated picture of the unruly feminist cohort of toys at my office, something else I'm grateful for.

Review of The Shape of the Eye

2011-12-02T06:18:00.002-05:00

Here’s my big sales pitch for The Shape of the Eye: this is a memoir that doesn’t enrage me.

I’m sort of compelled to read new memoirs by parents of kids with disabilities, particularly parents of kids with Down syndrome. It’s an unhealthy compulsion, because my intense frustration with most of these memoirs is so evident that Biffle has often asked me to stop reading them. The other day I was mad for some complete other reason, and Biffle said, “Are you reading a memoir?”

I get angry because the memoir writers often spend much of the memoir detailing their misery: here’s how terrible it is to have a child with Down syndrome. This story is at this point so old it’s clichéd, and it’s not functional in the ways I think these parents ultimately want it to be. They end the memoir at a place of love for their child, and they seem to want the reader to feel that love as well, but what the reader more likely feels is some version of, “I'm glad that’s not my kid. But bless their hearts.”

The Shape of the Eye doesn’t do this.

George Estreich certainly acknowledges profoundly mixed feelings when his daughter Laura was born and diagnosed with Down syndrome. For instance, he writes, “I felt that Laura’s life was valuable, that she was a child, a sister and daughter and granddaughter above all, that she might learn and thrive. I also felt that our lives were over, that her birth was a tragedy, and that we were condemned to a half-life of hospitals, acronyms, therapists, and forms” (xiii). So here’s what he does: he acknowledges this emotional place of paradox, and then he launches into a thoughtful reflection (even analysis, although I get that this word doesn’t turn other people on the way it does me) about how he and his family create meaning and love in the midst of a culture that, by and large, doesn’t do particularly well with disabilities, particularly with cognitive ones.

And he discovers that life with Laura is like life with a child: delightful, challenging, hilarious, frustrating. This is not a book about Laura’s birth being a tragedy. It is, as is true for all memoirs, a book about George Estreich, about his growth, his family heritage, his struggles with depression and his expansion into the role of father/writer/activist.

And what I particularly appreciated is that it’s a book about how we understand Down syndrome, how we talk about it. Estreich (like me!) is critical of many of the familiar stories that are out there, and he notes, “Each time I shared the news, I faced the difficulties of narrative” (26) (interestingly, I was making this very point Wednesday in a lunch with another scholar who studies disability). He actually has lots of good points about the importance of narrative—about the problematic descriptions of kids with Down syndrome as “sweet”: he even calls out the “little angels” description that pisses me off so much.

He writes about his own process of beginning to write about Laura. He does some reading—medical and historical—about Down syndrome and discovers that the way it’s described is often nauseatingly bad: unforgivably inaccurate (one fairly recent medical book describes people with Down syndrome as “trainable”) and offensive. He discovers that “What Down syndrome ‘was’ mattered less than the way it was described” (151).

By the time I got to this part of the book, I knew I’d found an ally, somebody who should come hang out with us at the NDSC Convention (come on, George!), and someone I should talk to about my research into prenatal testing.

I’ve gone through this review resisting the urge to offer tons of quotes from the book, but let me end with this one:

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 (208).

I completely agree.

Full info about the book: Estreich, George. The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit. Dallas: Southern Methodist University Press, 2011.

Ear Tubes

2011-11-28T09:20:00.003-05:00

It's an exciting day here at the Biffle-Piepmeiers. Maybelle has come home this morning with tubes in her ears! I suspect others don't share the amount of excitement i feel about all this, but for me this is a really big deal.

In a nutshell, here are the reasons (each of which i may or may not go on to elaborate):

1) Maybelle is going to have much much better hearing now.

2) I was able to go into a pre-op ward of a hospital and not fall to pieces.

3) Ear tubes = bodily discharges!

The elaboration. In no particular order...

Maybelle hadn't been exactly setting the woods on fire in her hearing tests. Hearing is one of those areas where people with DS can be compromised, so we and our medical caretakers have been very watchful. *a quick note: I've started this paragraph over 4 or 5 times now. The reason is that i've found myself assiduously avoiding phrases like "the doctor said..." or "the audiologist said..." The reason, i think, is because both Alison and I feel pretty ambivalent about the medical establishment. We've gotten some excellent care from some excellent doctors and some pretty sketchy care from some sketchy doctors. I guess the phrase "always seek a second opinion" has shown its value with us...

So anyway, very early on the audiologist wanted to sedate Maybelle and do a tympanogram and then got kinda snotty when we said we preferred to wait a little while for that. We too suspected that Maybelle wasn't hearing as well as she should but observation told us it wasn't because of any frequency dropouts. She seemed to notice noises in all the frequency ranges, just not as readily as she should have. It was gratifying then when we found out a few months ago that she had fluid in her middle ear. Erring on the side of caution, the doctor (one of the excellent ones) wanted to wait a while to see if it might have been the result of a cold or allergies. Later we went back in for another test (for which we requested a different audiologist), saw the doctor again and established that Maybelle did indeed still have fluid in her middle ear. We then scheduled the surgery for her ears tubes which just took place this morning.

It was even more gratifying to me this morning when the same (excellent) doctor came in and said she had had a lot of fluid in her ears. I have a love of all things booger or ear wax, scab or infection. I can't quite compete with my buddy Jason who has his own dog's testicles in a jar of alcohol, but i hold my own....oh wait... that didn't quite come out the way i meant it... Anyway, the idea of having fluid drained from Maybelle's ears felt so good to me I just knew Maybelle would love it too. I shivered with delight when the doctor told us it was a lot of fluid and shivered again when he said it was the consistency of rubber cement.

Now not only was this delightful from a bodily fluid point of view, but it was great news for Maybelle. The fact that the fluid was so thick indicated it had been there for quite a while. The upshot of all this is that Maybelle, who has been doing great with both word skills and enunciation, might just start setting those woods on fire now.

* * * * *

Below, i've included an email which alison sent out to her family. I copied and pasted here because it's more informative than my post and, also, i think it's cute.

Well, we're home from the hospital with a groggy Maybelle. Here's the surprising thing about Maybelle emerging from anasthesia: instead of being pleasantly snuggly and sleepy, she is frustrated because she wants to dance/walk/jump but can't actually manage her own body, so one of us has to have hands on her every second, which she also finds very frustrating.

She made it through surgery just great, and the hearing test she had while she was sedated shows that her hearing is...perfectly normal! No hearing problems at all. Our ENT said that there was a lot of fluid in her ears, and it had been there a long time, because it was thick--the consistency of rubber cement. Walter immediately expressed regret that he hadn't asked for a sample. The ENT couldn't tell if that was a joke or not (it wasn't).

Maybelle has been walking around for a long time with her ears filled with rubber cement. It's going to be amazing to find out how she interacts with the world now that she's able to hear so much better.

Today is a day of hanging with the sedated and/or frustrated Maybelle, and then she's back to school tomorrow.

xo,

Alison

Sarah Josepha Hale

2011-11-24T05:57:00.001-05:00

We had a follow-up workshop for the OpEd Project at the College of Charleston last week, and it occurred to me during that workshop that I should write an op-ed about Sarah Josepha Hale being largely responsible for making Thanksgiving a national holiday. I'm not the only person who knows about this, but it doesn't seem to get a lot of attention on Thanksgiving anywhere but at Baxter Sez. Wouldn't it be cool if the New York Times or Washington Post had a piece about this forgotten woman?

However, things have been busy, so I didn't pull it together to write an op-ed. Maybe next year. For 2011, Hale's going to be on the blog rather than in a newspaper.

Sarah Josepha Hale (1788-1879) is one of the 19th c. women I studied back in the day, when I studied 19th c. women. Hale is responsible for Thanksgiving being a national holiday. As editor of Godey's Lady's Book, hands down the most popular magazine of its time, she was incredibly influential nationally, and she used her influence to argue for things like equal education for women, high-quality American literature, and Thanksgiving.

The United States only had one national holiday at that time: July 4. A lot of people celebrated Thanksgiving, but there wasn't a set day for it, and it wasn't nationally recognized. She lobbied the Presidents for 25 years about this issue, and finally Lincoln complied in 1863. She'd been saying for years that an additional holiday would help bring the country together, and during the Civil War Lincoln saw the symbolic significance of this.

So as you enjoy your day off, eat your turkey or tofurkey, and think about the native people whose land the Puritans stole, raise a glass in honor of Sarah Josepha Hale, who should be a national celebrity on Thanksgiving.

Check out Psychology Today

2011-11-22T05:49:00.002-05:00

Head over to the Psychology Today website and see a post I was invited to write, called "Peter Singer: Espousing lack of human diversity, 20 years and counting." You all have read comments here and there from me about Singer, who is an incredibly important philosopher who's said some incredibly controversial things about human disabilities.

My colleague Jennifer Baker, who's a regular blogger at Psychology Today, wrote a post, and mine is a (sort of) response. Even though I'm articulating some of the "intense vitriol for Singer" which she notes "puzzles me a bit," she was incredibly gracious in her email back-and-forths with me, offering a lot of helpful explanations of the field of philosophy. And I think we do agree on one key point, which is that Singer didn't "cause" a disrespect for Down syndrome--he's voicing things that our culture already believes, and giving them additional credibility because of his status.

Okay, go over there and leave a comment. I think it may be a big conversation.

Dingaderry

2011-11-20T20:09:00.001-05:00

As I may have mentioned here before, Maybelle loves The Wizard of Oz movie. Loves it so much that I could probably recite/sing the movie to you, from Glenda's "Come out, come out, wherever you are!" to the Emerald City dwellers' "That's how we laugh the day away in the merry old land of Oz." (That's as long as she can go--most of the time she only watches from Munchkinland to the rescue of the Tin Man.)

She particularly loves the Scarecrow's song, and she's learning the lyrics and choreography.* All the moves she makes here are imitations of what the Scarecrow is doing. (Keep reading after the video, because I have a story.)

So, at the end of the song, after the Scarecrow has mused about all the things he could do if he had a brain, he sings, "I could dance and be merry, life would be a dingaderry, if I only had a brain."

Here's a conversation Biffle and I had about these lyrics.

Alison: What does that mean, "dingaderry"? What is that?

Biffle: It's just a word they made up. It rhymes and sounds fun.

Alison: Is it a particular kind of dance?

Biffle: No, I think they just made it up.

Alison: Do you have any evidence? Did you look it up on that "Straight Dope" website?

Biffle: No, but I'm 100% certain they made it up.

Alison: But he sings, "dance and be merry, life would be a dingaderry." Is that really what the people writing those lyrics thought was associated with having a brain? That's not what it means to have a brain. If he had a brain, he'd be all analytical, considering everything. He'd be, like, holed up in the library. Nobody thinks that having a brain means life would be a dingaderry.

Biffle: You're really stuck on this. Why do you care?

Alison: Because I have a brain! See--this is exactly what those lyrics are missing! If you have a brain, you think it's fun to stand in the kitchen analyzing the term "dingaderry"!

I thought I had a good point.

*Here's a tangential but related point about how cool the Wizard of Oz movie is. First of all, it has a female protagonist who doesn't ever become anybody's love interest, and she never gets rescued. She becomes part of a community, and they all look out for each other. That's remarkably rare. Second, the diverse (although all white) characters she joins in community with think that they're deficient--they're lacking brains, heart, courage--but in fact they all have those qualities in abundance, they just have to recognize them. So the movie isn't about people with lacks needing to be fixed; it's about funky, interesting folks who have all the qualities they need.

Lists

2011-11-17T15:44:00.001-05:00

Things I want to blog about:

s.e. smith's post about why she's not a feminist
George Estreich's book, The Shape of the Eye
Jen Baker's post over at Psychology Today about the Lucas-like Peter Singer
Gender identity and kids with cognitive disabilities (i.e. if my job is destabilizing gender norms, then why is it important that Maybelle learn them?)
The Op Ed Project and how cool it is

Things I want to own:

a pair of brown corduroy pants
a pair of dark blue jeans
running shoes
three more professional shirts (and if they don't need ironing, all the better)
black shoes that aren't scuffed all to hell

Things Maybelle says that are cute:

"So beepy" (so sleepy)
"No bee-tyou" (no thank you)
"I want yeah yeah yeah" (a request to play the last several tracks from Abbey Road)

And unrelated to all these lists, go have a look at the additional point Jamie Huff made on my post about "The sentimentalized narrative, or 'God Bless the USA.'"

NWSA 2011: Thoughts from back in Charleston

2011-11-16T06:32:00.001-05:00

You may have noticed that I only had two days of NWSA thoughts, although I was at the conference for four solid days. This is evidence of how busy those four days were. Full from morning until night! So let me provide some highlights from my notebook of observations about the conference, and then we'll move on to other matters on Baxter Sez.

At one point I wrote, "I never talk about 'methodology' in my writing. I have methodologies, but rarely (never?) do I map them out that way." It seems like all the grad students I saw talked about their methodologies right at the outset.
There's apparently a children's book called Maybelle the Cable Car by the same author (a woman) who wrote the steam shovel book.
Rachel Reinke has a colleague who's in WGS and refers to WGS scholars as "professionally offended." This relates to a point I made in the Program Administrators and Directors' pre-conference, where I pointed out Biffle's observation that WGS faculty use the word "appalled" way too much. There's a lot that's appalling, of course, but we don't want to be the field that's universally appalled or professionally offended. I talk about this in my essay in Rethinking Women's and Gender Studies, out in December.
I had a wonderful date with Sujatha Jesudason and took a page of notes. One note of interest: how is it that talking about prenatal testing makes people think you're pro-life? Sujatha and I are both emphatically in favor of reproductive rights, and both questioning the role of prenatal testing.
I had an extended conversation with my feminist cohort about fashion--namely, my lack of it. They all know that I hate shopping, and they generally endorsed Biffle's notion that I buy five outfits that are identical and wear them all week. In other words, dress like a man.
And here's an example of how I'm trying to incorporate self-care into my life: there was a dance party Saturday night, but I was exhausted, so I went back to my room. I missed a dance party! That was a big step for me, and a bit sad. But I was really exhausted.

I'm glad to be home, and I'm cooking up various thoughts for the blog, so I'll be in touch soon.

NWSA 2011, day 2

2011-11-11T18:04:00.002-05:00

Let me tell you about my day, in bullet points and photos:

* Have been going 100 mph since 5:30am

* Went to a fun morning panel with presentations by Liz Groeneveld (who is doing great research into zines by girls and women--and quoted me!) and Jessalyn Keller, who's writing a piece for an edited collection that I'm also going to be in.

* Got reconnected with Rachel Reinke. She was amused at how many of my friends knew who she was when I said, "You know, I advised her bachelor's essay AND she was Maybelle's nanny the same year. She came to my house to do bachelor's essay advising after Maybelle went to bed." My friends said, "Oh! Right!"

* Took part in a fun roundtable presentation about blogging, with a bunch of my co-editors at Girl w/Pen. My big insight: I'm able to fit blogging into my already full life because it's really fun. Not all that chewy an insight, but true!

* Had a lengthy conversation with my editor at NYU. We decided that I'll plan to have the full book proposal, including a sample chapter, to her by the end of the summer.

* Had a conversation with my new BFF, Judy Norsigian, one of the original members of the Boston Women's Health Book Collective that did Our Bodies, Ourselves. She seemed a bit surprised when I told her how honored I was to get to talk with her. She took my card!

* After all that, I went to my room and napped during big afternoon plenary.

* Hung out with the gang at Karlyn's book signing, which was fun.

* Met up with Amanda Richey, a friend from childhood who I now only ever see at NWSA.

* Recognized how extensively I've been talking about the fact that I'm in therapy (well, it's important to my life, plus it's nothing new).

* I'm skipping out of an evening panel session that I was going to go see so that I can have some down time before dinner. I believe that 18 of us are going to dinner together (!!).

And in case you're concerned that maybe feminists aren't as frightening as you've been led to believe, here's a sticker that a major academic press gave me for my nametag:

They were giving it to other people, too. It was nothing personal.

Alison's updates from the NWSA

2011-11-10T21:46:00.002-05:00

Okay, I've had a great time at Day 1 of NWSA 2011. Here are some things I've learned:

The US has 5% of the world's population, and 25% of the world's prisoners (this info from fascinating Ruth Gilmore, who is someone my Gender and Violence students will be hearing about).
Women's and Gender Studies is the ideal liberal arts degree (thanks, Astrid!).
If you Google "hysterectomy and NWSA," a Baxter Sez post from 2007 is the fifth item on the list (Karlyn gets credit for discovering this, and she'll write a book about it if I gnaw out my own uterus).

And here are some of my NWSA friends hanging out before tonight's keynote lecture.

Op ed!

2011-11-09T09:13:00.000-05:00

Amber Cantrell and I finally got our op-ed published. We wrote it over the summer and have sent it to, I think, seven newspapers. Persistence pays off!

"Looking anew at Down syndrome" in The State.

The sentimentalized narrative, or, "God Bless the USA"

2011-11-08T21:48:00.003-05:00

Recently my friend from high school who is now a famous blogger, Tracy Moore, sent me an email in which she asked,

Have you seen this video about the kid with autism who makes a basketball hoop? People are posting this like crazy on Facebook lately, and it's one of those posts where everyone is going nuts for how much this "makes their day" and people watch it and comment and say that like anyone who doesn't cry when they see this video is dead inside and other assorted up with people type responses.

But when I watch the video -- it's a basketball game at a high school somewhere where they let this kid with autism shoot some hoops and he "miraculously" makes them and the crowd goes wild with happiness -- it just really makes me think of the conversation you have going on your blog about representations of intellectual disability.

First off, they are crazy hard shots to make, so it'd be cool to watch anyone nail like 18 points at the very last minute of a game. But I guess my problem with the video, as best as I can articulate, is along the lines of what you write about Down Syndrome depictions. If we act like it's some miracle from heaven that a kid with autism can make some baskets, isn't this setting shooting hoops as this really high bar that we are supposed to regard as amazing and rare? When really this probably isn't as exceptional as the video makes it?

Also, I barely know anything about autism aside from a story or two I've reported that relates to it, but I do know that there's a spectrum, and this news story says nothing about that, and just sets up the viewer to believe that this one kid represents "autism." Here is a kid with autism, it says. And that having autism means it's crazy rare to be able to shoot a basket. Intellectual disabilities -- do they always go hand in hand with physical ones? Meaning, is it weird to assume someone with an intellectual disability couldn't be good at basketball? It just seems incongruous to assume so.

Anyway, I'd love to hear your thoughts -- you may have already been sent it, but it'd be great to read your take on it. Maybe something for Baxter Sez if you need it.

I responded:

I've been hearing about that video, but Biffle and I watched it together this morning because of your email, and it represents a problem I've been planning to blog about, what I'm calling the sentimentalized narrative, the story that's "miraculous" or "absolutely amazing," that makes a room full of typical people weep and offer a standing ovation. It's just a version of the standard pity narrative, and it makes me a bit sick to my stomach.

We see versions of this narrative all the time, often--but not always--with sports. I've seen lots of videos of the kid who was the team "manager" who's allowed to suit up on the last day, at the last game, and is allowed to "play," with everybody keeping their hands off and making it all about the "special kid." (Okay, I'm getting weary of my own scare quotes, but you see what I mean). I've seen it with other basketball instances but also football and baseball. Why wasn't that kid allowed some meaningful inclusion during the whole season? This is where the Special Olympics is a nice contrast: those athletes train, work really hard, and compete meaningfully. And with this latest video: if that kid is that good at basketball (making six three-point shots, which seems pretty significant), why wasn't he an actual member of the team?

I saw a different version of this sentimentalized narrative a couple of days ago. A high school senior with an intellectual disability loved to sing, and through some parental maneuverings he got connected to a professional singer who came to the student's high school choral performance, pulled him up on stage with him, and together they sang--are you ready for this?--Lee Greenwood's "God Bless the USA." I'm in a ballroom where this video is shown. The audience of mostly typical adults is gasping. Tears are beginning to flow. I pulled out my cell phone and texted Biffle,

"I am watching a video of a 'special kid' singing proud to be an American. It's like a terrible parody of what I want Maybelle's opportunities to be. LH mercy."

Then, "He and [the professional singer] are really proud to be Americans. Ppl are weeping."

Then, "Standing ovation. Please let's not let that be Maybelle's future.

Biffle and I already had boatloads of scorn for "God Bless the USA." As he observes, we're jaded, so that's a song which presents a version of patriotism that we pretty thoroughly despise ("at least I know I'm free"? This is the reason you're proud?). Even more to the point, he says it's a song that offers no real emotion, but just pushes a button, like certain violin techniques in movies. You get to the end of the first verse, and you're supposed to start crying, and your body knows it, even though nothing meaningful has been offered. It is, itself, a sentimentalized narrative. This is why it's the perfect song to have the person with an intellectual disability sing. As a culture we're prepared to see them through a "bless their hearts" dehumanizing pity lens.

The audience didn't offer a weepy standing ovation because they realized that the student with the intellectual disability was a great singer (or a good basketball player, or even an interesting person to get to know). A billion people aren't posting the basketball video to Facebook because it's helped them to understand autism in a clearer, more complex way. Instead, it's the seemingly kind side of a toxic stereotype.

Okay, this email will probably become my blog post. Is it okay if I quote you to start it off?

--Alison

(She said yes.)

Editorial note: Here's an additional insight from brilliant graduate student Jamie Huff, who used to be a brilliant undergraduate in WGS at the College of Charleston:

I was thinking about the "God Bless the USA" song/conference moment we were talking about at breakfast. We talked about how the song says nothing, but I was thinking about how it also does more than that. The specific political representation of having a person with an intellectual disability sing this song erases the history of disability in the US. For example, how can this person with a disability really "at least know" that he or she "is free" in a county whose court system produced Buck v. Bell? Or needed the intervention of the ADA? Or that issues reports each year about how many people with disabilities die from neglect, ignorance, and outright violence in state-run group homes in New York (but doesn't do much to change it)? "God Bless the USA" simply pretends that those things didn't and aren't happening, and to do that is more than neglectful, it is violent (in the sense that my advisor uses the term "epistemic violence"). Sorry for the long email--I just had a serious critical theory moment with that song.

Random updates

2011-11-05T14:30:00.001-05:00

I've been out of town for two days, and Maybelle's been out of school (ECDC was closed while the teachers went to a conference), so Biffle and I have both been too busy to blog. I've been thinking of substantive posts, but instead, I'll provide a post with highlights of the last week.

Halloween
What a great holiday! At school, Maybelle made a construction paper jackolantern (which she referred to as "happy face"), and Biffle carved our at-home jackolantern as a replica.

Really good job, don't you think?

ECDC has a parade every year, where the kids wear their costumes and walk across campus:

The parade ends on the Cistern, where Maybelle and lots of other kids ran frenetically around rather than standing still and singing the song they'd planned to sing.

Then Halloween night, we participated in the Halloween tradition we've done since Maybelle was two months old: the party at my friend Lynne's house and subsequent trick or treating throng. This year Maybelle participated even more fully in the trick or treating. She went up to people's porches and said "Trick or treat," and then when they offered her candy, she said, "No bee-tyou" (no thank you). She doesn't like candy.

Getting to fully enjoy Halloween with Maybelle and my friends was a surprisingly big deal for me. The day felt so special--seeing her in her witch costume (thanks, Nonnie, for making such a great cape and skirt!), seeing her admire the pumpkin, have fun in the parade, give a try to trick or treating--these were surprisingly important moments. I had this sense of, Oh, yes, this is what I want in my life.

I have other things I might share--thoughts on the conference I attended, thoughts on the fabulousness of the College of Charleston's REACH Program (we actually are, I think, the best in the nation)--but rather than take this post off-track with academic musings, I'll end with the other big news from our household.

Gabe
The SPCA was having a big adoptathon today, and we went and adopted a one year old Great American Black Dog named Gabe.

I have now known Gabe for four hours, and here's what I'd like to say:

He has such a sweet face. That was one of the big things that got to us.
He is quiet. In the four hours I've known him, he's barked once--and that was playfully, at George Jones. When he was in the adoptathon tent, 50 dogs were barking, squealing, howling, screaming, and he didn't say a word. Sirens went by our house this afternoon, and he looked up attentively but didn't break into a howl like some dogs do. A guy jogged by, and Gabe watched, his body poised for action, but he didn't bark. We'll have to see what he does when the school kids walk by (that was when Benya would let loose with bloodcurdling barks).
It is a wonderful thing to have a dog in the house. Gabe is checking things out, clicking up and down the hallway, monitoring the front door thoughtfully, sniffing here and there, and it's incredibly comforting. It's comforting for a few reasons--because of safety (I love that attentive dog body that says, Don't even try to mess with this household) and also because of...what...the presence of another person? As I sat down to blog, he lay on the floor beside me, and he looked up at me just now while I was pondering what to write. I can stroke his face and get some pure affection. I really like having him here.
Maybelle is waking up from her nap, and Gabe is letting me know that he heard some noise from the front of the house (i.e. Maybelle), so I'll sign off.

George Jones, you are a generous cat to have taken it so gracefully when we brought a new dog home. Perhaps you're happy to have another dog in the family.

The Joys and "Oh, Boys!" of Biking

2011-11-01T08:02:00.006-05:00

If i want to say it nicely, i'd say that i totally understand the frustration that commuters in automobiles feel about commuters on bicycles slowing down their lane. If i don't want to put it nicely, then i'd say that commuters in automobiles are generally frustrated in the first place, and even if all bikes were banished from the roadway, motorists would only find something else about which to be frustrated.

Here's the deal: Charleston--at least the peninsular area of it--is one of the most bike-able cities i've ever been in. There is almost no where downtown that one can't get to on a bicycle almost as quickly as they can in a car. Add to that that parking a car in Charleston is a pain, and there's almost no reason not to bike to where you need to be.

Here are some more reason why one should bike in Charleston:

It's a healthy thing to do.
You get to know your neighbors a lot better
Sightseeing is a lot more fun on a bike
The carbon footprint of a bike is near zip
As stated above, it's easy to park a bike
Commuting is a joy on a bicycle. Except for irate motorists, one will almost never experience frustration commuting on a bike
The noise pollution of a bike is near zip
The atmospheric pollution of a bike is near zip
Your child will probably enjoy a bike ride more than a ride in the car

A couple of stories about irate motorists for your reading enjoyment:

The set up: Alison takes Maybelle to school in the morning on the Maybelle bike. In the afternoons, i go to Alison's office with the speedy bike and swap it for the Maybelle bike. I then take Maybelle home. Sometimes we all leave at the same time which is a real pleasure.

So a couple of weeks ago, Alison and i, along with Maybelle, were riding home together from school. Our practice is to ride side by side, with the non-Maybelle person riding on the outside performing the function of a Maybelle buffer. What this means is that we take up an entire lane of the road. We come home on a street called Coming Street, which is a two-lane, one-way street.

Most people taking Coming are going to eventually take a right at a road called Crosstown and head on home on the interstate to Mount Pleasant or North Charleston, etc. The right lane, therefore, is a crowded place. The left is mostly empty. This doesn't mean, however, that a few speedy (and frustrated folks) are gonna do their best to gain a few seconds by going around the right hand lane traffic. If we are in the left lane we are thwarting their plans. This annoys them.

On this particular day, a fellow in a truck decided he would do something the law calls "buzzing," i.e. riding as close to us as possible in order to teach us a lesson. As he was passing is, i reached out and slapped the side of his truck with my hand and said, "Come on, Man!" As usually happens, he drove on. (When people see that we're carrying a child, shame compels them to get on out of there). And as also usually happens he was stopped at the next traffic light, adding no extra ground with his haste. We rode up to him at the light and had a pretty civil conversation.

His stance was that all cars hate bicyclists (he was an avid cyclist) and that it was the biker's responsibility to stay outta the way. I was/am of the opposite mind and think that cyclists should do their best to assert their rights so that motorists will eventually come to accept a cycle's presence on the road. While we were so discussing, the light turned green. I pointed that out, but he continued talking. Cars behind us grew impatient. I started to roll away, he continued to talk--almost through the entire green light.

The moral to the story, i think, is that automobiles are vexing for everyone.

Story number two: Catherine came to visit us a couple weekends ago. It was a lazy Sunday morning and Alison, Catherine, Maybelle and me were on our way to get some cinnamon rolls and then head on to church. As we pulled up to the light--at Crosstown, yet again--we had command of what i'll refer to as lane number two. Lane number one is for left hand turns, lanes two and three go straight, lane four is a right hand turn. Behind us was a family in a car. Three bikes and one car composed the entire amount of traffic at this four lane intersection.

The light turned green. Catherine was a little unsure of her cycling skills and wanted to take the rear position, but i encouraged her to go ahead as i knew the person in the back always gets the grief from the motorists. This tiny discussion delayed us from taking off for, oh...two seconds.

The car honked. We started moving. The driver yelled to get out of the way. I waved my arm to motion him around us. He honked again. Then he gunned the car, and although the man had an area of pavement the size of a small grocery store parking lot, he passes us in our lane mere inches from all of our bikes and he did it at a wheel squealing speed. He was buzzing us. He was teaching us a lesson. I was so grateful...

I told Alison and Catherine to go on, and took off after him. As mentioned before, i think people feel an instant regret when they look back on their handiwork and notice that they've endangered the life of a three year old. I think this was the case with this person also. Also mentioned above was that a bike can get almost anywhere as fast as a car in downtown Charleston. He was almost assuredly trying to get away. I was almost sure to catch him.

He turned down various side streets, but i eventually headed him off by guessing his path at--i believe it was--Morris and King Street.

Now a word about these tete-a-tetes with motorists....Years ago i gleaned a pearl of wisdom from Alison's father. I had been on the phone fussing with some manufacturer about a faulty product i'd bought and was not getting the response i wanted. I'd ask him for his take on my m.o. and dilemma and he'd responded by saying something along the lines of Well, it depends on whether you want your money back or you want to be right.

I've thought of his words often, and as i get older i find i'd rather have my money back than be right. As such, while i continue to speak to aggressive drivers, i usually do it as calmly and reasonably as possible. The driver stands an almost 100% chance of being angry--after all they are in a car and that's what cars seem to do to us. One of us, i figure, needs to be the reasonable one.

While catching our buzzer, then, i rehearsed my first words: "I'm sure that you didn't see the child on the bike." I practiced this in my head for the couple of minutes as i was catching up to the guy. As i said, i actually cut him off at the pass. I made a little side track and pulled in front of his car at the intersection of King and Morris. I was on King, he was on Morris. I had the green light and came to a stop in the middle of the intersection. He gunned his motor, running the red light and drove straight at me, slamming on his breaks at the last second and--probably according to his plan--just barely hitting me on my bike. Again, motorists are full of lessons for bicyclists....

They were a family. A man, a woman and their son who appeared to be around 11 years old. They all got out of the car. The man and woman came at me, the son took off down the sidewalk in what was obvious embarrassment. I gave them a few seconds to yell at me, and then used my line about the child. After a millisecond delay, they both told me i should be on the sidewalk. I said it was illegal to ride a bike on the sidewalk. They said it was illegal to be on the street. We were at an impasse. The conversation kept going for several minutes, but i won't trouble with it here because it's just a he said/she said kind of thing and isn't worth repeating.

----a story within the story....

Now: An interesting note, and one that isn't about biking at all but concerns life as we all know it here in Charleston--and one of the few stains that mar this fine city--is the fact that South Carolina is an absolute disaster of race relations. This was a family of color. I was a white man in a Patagonia vest riding a fancy fixed gear bike down the middle of a street.

As our conversation was winding down and i was preparing to ride off and they were getting back into their car, the woman said, "Y'all think you own the world." I said "Who's 'y'all'?" She responded "You People! You know! 'Y'all'!"

I did know. This guy'd done us wrong. He practically run us over--and not only that, but run over a three year old--and had then tried to get away. I'd tracked him down, and then he actually hit me with his car. He didn't stand a chance. I reflected that if a cop had pulled up at that moment the only thing that might have saved this guy from, at the very least, a serious talking to by an officer, was if i were homeless and stinky, or drunk or, better yet, all three. She was right. White people do indeed own the world. Most of us don't know it, but the fact still stands. In this case however, she was talking to a white person who was actually aware of his ownership and is very uneasy about it to boot.

Lee Piepmeier popped into my head again, and i sorta let a few seconds of air breathe between us. They had gotten back into the car at this point, but the windows were down. I leaned down and said more peacefully than i would actually expect myself able to do "that's just not right now. I'm sorry, but this has nothing to do with color, y'all." The man said, "alright. We're cool then" and they drove off.

We weren't really cool, though. At all. They'd done us wrong. In an indirect way, i'd done them wrong. I've thought about race-relevant situations like this quite a bit while living in Charleston. While i'm not going to go into even a smidge of it, i do want to mention one thing:

If i run down my list of neighbors within a few blocks i can come up with these names: Bill, Bill and Mona, Melvin, Al, Ethel, Sonny and Juanita, Charley, Thelma, Frieda, Nick, Stanley, Richard and his hippie-kid brother whose name i can't recall at the moment. Of these 14, 11 are people of color. Among those of color, there are only 4 cars. All the white people have cars. As a matter fact, including me and Alison in that list, the white people actually own 8 cars. Almost as many cars as people of color. So, the one thing i want to mention is that while i'm busy sanctimoniously "saving the planet" by riding a bike and not using any foreign oil and whatnot, 7 of these people, as far as i know, have never even owned a car.

There are some significant gaps within our American culture.

Okay. Back to bikes....

Alison and i have talked about the best ways to deal with aggressive motorists. Ways that might get our need for safety and rights across while, at the least, not making more enemies, and at best, winning a few people to our side. Most of the ways we've come up with are too caught up in the pleasure of revenge--in other words, of being right, but not getting our money back. One way we've thought of is this: Carrying little laminated cards with South Carolina bike laws we can hand out to irate drivers. I made one just this morning. It looks like the one below. I've saved it as a 4 x 5 pdf, and if you'd like a copy then lemme know and i'll email you one.

Going to the fair

2011-10-29T18:30:00.004-05:00

Here Maybelle was at her very first fair in 2009.

You'll notice that at this fair, she was actually eating funnel cakes, which she refused to do today. She is now rejecting the food of her people.

As for 2010:

This picture captures much of what last year's fair was like for her: vaguely terrifying. Livestock? Terrifying. Elephants? Terrifying. Rides like the merry go round? Definitively terrifying.

Today we went to the 2011 Coastal Carolina Fair. We returned to our previous Charleston tradition and went to the fair with Claire, Adam, and Nina. It was a great day!

You can see from this picture that Maybelle was still terrified of all things animal, but the this year the terror wasn't as lasting. It did make us wonder, though: is Maybelle such an urban baby that the lights and sounds of the midway don't frighten her, but the quiet organic experience of being around animals does?

Because Adam, Nina, and Claire were there, Biffle and I both got to go on some adult rides. This is the first roller coaster I've been on in years, and it was such fun! I'm glad I warned Nina ahead of time that I'm a screamer, because boy, was I.

But perhaps the most exciting part was that this year, Maybelle was an enthusiastic rider on two rides: the bumblebee, and the dinosaur. She didn't like waiting in lines, but as soon as the ride started moving, Biffle said she knew what was going on, and she was having a good time.

Today really felt like an adventure. I personally love love love the fair: I love the chaos, all the different smells and sights, the weird mix of people, the rides, and most of all, the food. This is why Maybelle has gone to the fair three times in the three years that she's been alive. It was great to see her enjoy today. While the livestock were a bit much for her, she loved looking at various flags waving, she pointed out the helicopter every time it went by, and she jumped on every metal frame covering the wiring in the midway. She and Biffle watched rides going up! and down! And then she had fun on the rides. As we were walking back to our car, Biffle said to Maybelle, "We rode on the bumblebee!", and she added, "Dinosaur!"

I wondered if it would be tricky to have two groups with such different agendas and paces. Maybelle's pace was, let's just say, leisurely. But it worked out beautifully. We split into different groups a couple of different times, and then reunited for animal observations, food, and watching Maybelle on her first successful ride. And Biffle rightly noted that part of the reason the day was such fun is that Adam and Nina are incredibly easy to be around. Rest assured that not every soon-to-be-eleven-year-old is as eager to hang out with Maybelle--to hold her hand, to talk with her, to walk slowly because she's walking slowly--as Adam and Nina. They were great.

A Short Rant posted on Craigslist

2011-10-28T18:42:00.000-05:00

Hey Scrounger's Paradise and all you other crappy businesses too cheap to actually pay for advertising:

The materials section of Craigslist is meant for non-professional individuals. Craigslist has set aside a section called "Services" to provide all you pawn shops, flooring warehouses, and junk yards a place to advertise. Another issue at hand is that craigslist is intended to be for local audiences. That means that something in Asheville, North Carolina should be advertised in the Asheville, North Carolina craigslist. Oh, and one other note: neither a hot tub nor a front door is a "material."

All of this information is available in "Terms of Use."

Now, while Craigslist actually allows communities to decide what they do and do not want to have on their own local c.l. site through the use of flagging, i'd like to encourage all of us in Charleston to flag the crap out of the folks who are too cheap to advertise and who clog up the materials list everyday with their commercial business ads. If we don't, well then i guess, we as a community agree that they should be allowed to do that and i'll leave it alone.

But still: Since i'm a far out hippy lefty, and i'm sure you're probably weary of my sanctimonious attitude anyway, i'll just heap more coals on the fire by saying that Craigslist is the textbook definition of that most-dreaded of American diseases: Socialism...

It's free for non-profits. It's community controlled/self policing. Craig himself refuses to sell the site even though he could make billions of dollars by doing so. I'm only left to assume that any business that actually puts their wares on this site either implicitly approves of Socialism, and is therefore a far-out hippy lefty like me, OR is a bonking idiot, OR knows that this site is full of far out lefties and hates them but is too capitalistic too have any morals.

MaterniT21

2011-10-27T04:33:00.002-05:00

This week, a drug company called Sequenom has made their prenatal blood test, MaterniT21, available in select markets. This is the test I made reference to in a post or two over the summer: it's the test that can examine fetal DNA from a maternal blood sample. What this means is that it can provide the information that, until now, could only be gotten from amniocentesis or CVS, and these are tests that carry a risk of miscarriage.

Well, I say it can provide the information that an amnio or CVS provides. These are tests that examine fetal genetics for a wide range of things. MaterniT21 looks for one thing, and one thing only: Down syndrome.

Amber Cantrell and I have interviewed quite a few women as part of an extended research project. Those who've chosen not to have an amnio or a CVS have said this was because of the risk of miscarriage. A maternal blood test carries no risk of miscarriage, and it can be done quite a bit earlier in the pregnancy than an amniocentesis. Earlier in the pregnancy matters because 90% of people who discover through testing that their fetus has Down syndrome decide to terminate the pregnancy. If you can learn that your fetus has Down syndrome earlier in the pregnancy, abortion is safer and easier.

As you all know, I am a big advocate of reproductive rights, so this isn't a post saying that folks shouldn't have abortions. It's a post saying that I'm interested in seeing how this new technology affects our conversations about parenthood and disability. We're a culture that often lets technology--rather than thoughtful ethical conversations, for instance--take the lead. So where will this technology lead us? What will it mean for the decision-making processes of women who are pregnant? What will it mean for people, like my daughter, who have Down syndrome?

Cross-posted at Girl w/Pen.

Things I love about teaching

2011-10-26T08:23:00.000-05:00

Ooo, it's a theme this morning!

Yesterday my students were all required to write responses to a very dense (but interesting! and important!) set of readings about gender and violence. One of my students made this mobile.

As you can see below, the shapes all had (good) quotes from the readings on them. I'm not really sure how (in an artistic sense) Martha Mahoney and Kimberle Crenshaw's essays related to a mobile, but I love having students who are willing to be creative in engaging with our course material.

And now we have more funky art for our office.

Things I love about the morning

2011-10-26T05:16:00.000-05:00

1. I love a cup of coffee. Love it. It doesn't have to be good coffee, or particularly hot--it just has to have some milk in it, and I find it so satisfying.
2. The quiet before the day really begins. That's what time it is right now: I check emails, cruise around my friends' blogs, read my Google alerts about prenatal testing and Down syndrome, think about things with no schedule in mind.
3. Snuggle time. These days, Maybelle really loves the first 15 minutes of the morning to be in the rocking chair. I'll get her out of bed, and she'll say, "I to rock." So we sit in the rocking chair, she snuggles up, and we rock.
4. I actually really enjoy Maybelle's musical pickiness. While we're rocking, I'm supposed to be singing to her, but she is incredibly opinionated. I'll start up with "Jelly Man Kelly," and she'll say, "No." Then I'll launch into "Bingo": "No." "Only the Good Die Young?" "No." One morning she had me sing TMBG's "James K. Polk" three times.

Maybelle is now calling out from her bedroom, so I'll go and enter into two of my favorite morning things.

8 of 21: Just Dance Kids

2011-10-24T19:18:00.000-05:00

About a week ago Maybelle and I visited with our friends Conseula, Francis, and Cate. While we were at their place, the girls pulled out their Wii and the game Just Dance Kids.

I've done some of this Wii dancing and singing stuff before. Catherine and I had a solid evening of the Wii Michael Jackson game a few months ago, and it was strangely hilarious and fun. The Just Dance Kids captured that hilarity and fun for the younger crowd.

This video game allowed you to select songs, from songs that are perfectly pitched to the toddler crowd--the Wiggles' "Hot Potato"!--to those that are perfectly pitched to their moms--Toni Basil's "Hey Mickey"! For each song, there are kids dancing, and the dance moves by and large are simple and repeated. If you're actually playing the game for a score, you hold the Wii thingy as you wave your arms around, but if--like Maybelle--you're just dancing for the joy of it, you can march up to the tv, study the moves and emulate them, then turn around and emulate the other people who are dancing, and sing along with the songs you know.

Maybelle enjoyed it so much that she danced intently through "Hey, Mickey," "Happy and You Know It," "Hot Potato," and a couple of songs I didn't know that Francis picked out. I finally had to hold Maybelle for "The Macarena," but until that one came on, she was dancing completely on her own.

She had so much fun that this might be what she's getting for Christmas. She does love to dance.

7 for 21: The poo story

2011-10-23T19:19:00.003-05:00

Last night Catherine and I went on a date while Biffle was playing a gig elsewhere in town. One of the world's best babysitters was hanging with a sleeping Maybelle, who had apparently made some complaining--but not distressed--noises shortly after going to bed. This isn't a new phenomenon, so he'd listened to see how upset she was (not very), and let her be. She'd quieted down and presumably gone to sleep.

Shortly after we got back home, Catherine heard Maybelle talking cheerfully to herself, so I went into her bedroom to give her the "Maybelle, it's time to go to bed!" stern speech. As I opened her door, a wave of smell washed over me. She cheerfully said, "Good morning!" to me, and I said, "We need to change your diaper."

And then I picked her up out of the bed, and realized that her back was warm and moist. And when I brought her into our bedroom, where the light was on, I saw that her little hand was brown. Something exciting had happened in bed, and she'd done some exploring

Catherine had to strip the bed, banish the stuffed animals, and confirm that the mattress cover had done its job. I had to take Maybelle to the shower--it was that bad. I scrubbed, and scrubbed again: "Let's wash your hands one more time!" Fortunately, Maybelle was very happy with the shower, and after she was cleaned, she was content to read Goodnight Moon and head to bed again where, her digestive system completely empty, she slept soundly.

I know others have far more dramatic stories than this one, but this was the most dramatic poo incident we've had in our household. I'm not sure exactly what to do with some of the animals (how do you de-poo a handmade sheep?), but we made it through, and I'm hopeful that tonight will have no exciting incidents at all.

6 for 21

2011-10-22T13:17:00.001-05:00

Yeah, so we've only posted six posts as part of the 31 for 21 campaign so far. Our intentions were good, but...you know...lots of distractions in life, from random personal stuff like the internet being out to random professional/political stuff like books I read that clue me in to troubling phenomena in my city.

But here is a happy post about Catherine's visit to Charleston this weekend. You can see what a good time Maybelle and Catherine consistently have together. Maybelle hasn't seen Catherine since August but immediately knew who she was and has been very happy to see her (perhaps she's also picking up on my vibe about Catherine being here).

Hauling a happy Maybelle around the pumpkin patch

Swinging at the playground

This is just a picture that shows how damn cute Maybelle is.

Catherine is a speech therapist, and in that professional role, she taught Maybelle the phrase "Ta dah!" today.

Killing the Black Body

2011-10-20T11:13:00.000-05:00

Yesterday I read a book called Killing the Black Body: Race, Reproduction, and the Meaning of Liberty, a scholarly study from 1997 by Dorothy Roberts. It's a book I should have read long ago, for a number of reasons. First of all, it's incredibly important and often cited. But I didn't realize that there were even more personal reasons I should have read it.

Here's how it starts:

In 1989, officials in Charleston, South Carolina, initiated a policy of arresting pregnant women whose prenatal tests revealed they were smoking crack. In some cases, a team of police tracked down expectant mothers in the city's poorest neighborhoods. In others, officers invaded the maternity ward to haul away patients in handcuffs and leg irons, hours after giving birth. One woman spent the final weeks of pregnancy detained in a dingy cell in the Charleston County Jail. When she went into labor, she was transported in chairs to the hospital, and remained shackled to the bed during the entire delivery. All but one of the four dozen women arrested for prenatal crimes in Charleston were Black.

You know that when you're reading a book called Killing the Black Body, and it starts in the place where you live, that this is a bad, bad sign.

I knew a bit about this horrifying practice, because I would talk about it in my Women's Studies classes at Vanderbilt. I'd talk about how racism affects reproductive rights, about the ways that racism and sexism intersect, and about how racism and sexism help to create policies that are actually bad for everybody. I learned a bit more about it once I came to Charleston: I learned that one of the women whose path crosses mine again and again, Susan Dunn, was one of the attorneys who helped bring this case before the US Supreme Court and get this practice to be recognized as unconstitutional.

What I didn't know until I read Roberts' book is that the Medical University of South Carolina, MUSC, enthusiastically helped to make this racist, sexist policy happen. In fact, it was their idea. This makes me sick to my stomach for a number of reasons:

I gave birth to my daughter there. (And I have some stories from that experience that will give you a sense of how they approach patients depending on the class stereotypes they're projecting onto them. Perhaps I'll blog about some of that at some point.)
I've had MRI after MRI there.
Maybelle's wonderful speech therapist is there, so we visit an MUSC office once a week.
Any other medical care Maybelle needs--like hearing and vision tests--we have performed there.
Biffle has gotten ER care from them on multiple occasions.
I have good friends who've completed their degrees there.

And they were behind this policy. I know that good people do shitty things all the time--this seems to be part of being human--but it does make me feel so outraged and exhausted to think of medical professionals treating their patients as sub-human. Yes, drug use during pregnancy isn't anybody's idea of a good practice. But is the way to address that problem to yank a newborn away and send the mother to jail? To chain the mother to a bed while she's delivering? Apparently the women were given the "option" of drug treatment, but there were no drug treatment centers that treated pregnant women, and the drug treatment that was offered to the new mothers provided no childcare.

I'm going to go email my friends who work at MUSC, as well as Susan Dunn, and find out if MUSC has gone through some sort of serious soul-searching process and made amends for being part of a practice that shat upon black women and their children.

Internet and Flantor the Peno

2011-10-20T10:40:00.000-05:00

For the last couple of days, we haven't had internet at our house. Our cable modem has failed us, and despite the fact that our neighborhood is increasingly full of college students, none of them have unsecured wireless internet that we can glom onto. We're very hopeful that this will be fixed by tomorrow.

I have some posts I've been working on, and I'll probably post something in just a few minutes, since I'm at work, where there's plenty of internet. But in the meantime, enjoy this picture sent by my brother Trey, commemorating an incomprehensible--and yet brilliant and hilarious--joke by my brother Aaron. Please note the shout-out at the bottom: "Scridge one up for the Gridge." Wow, were we an odd bunch.

Reasons why feminism is a good prerequisite for having a child with Down syndrome

2011-10-15T19:01:00.000-05:00

This week I read another memoir written by a parent of a child with Down syndrome.* As is the case with many, many of these memoirs, the first half of the book was a story of a parent struggling with grief and sadness, with loss, with the horrible, horrible bummer of having a child with Down syndrome. I was so disappointed. Haven't I already read that story a billion times? Aren't we tired of that story and ready for a new one? And for goodness sake, can you not start the story with a chapter that's about how great things are now? You know that new parents are picking that book up and thinking, "Oh, no--this is just as bad as I feared!"

At any rate, one of the things that struck me while I was reading is that I didn't have the same year-long struggle that many folks have to adjust to having a child with Down syndrome, and at least one component of why I didn't have to struggle that much is the fact that I was already a feminist when Maybelle came along.

So, reasons why feminism is a good prerequisite for having a child with Down syndrome:

Beauty standards: I'm already quite skeptical of them. I want Maybelle to have her own, unique beauty, like so many of my students do. I want her to look funky, distinctive--not to fit into the homogenous, stereotypically girlish mode. Please see the picture on the left for an example of Maybelle's awesome looks. I love all the ways that she's visually distinctive.

Activism: It's not that I want Maybelle's life to have additional challenges, but long before she was born, or even conceived, I knew that she was going to be an ethical person in a fucked up world. What this means is that I'd always envisioned her as an activist, because activism is a necessary component of ethical humanity. So she'll have some easy targets. And we already have tools.

Recognition of social construction: As you're all well aware, I'm into the social construction of everything. Before Maybelle was born I already had a scaffolding in my head of societal oppressions and how they operate. Adding one new concept into this framework--the notion that disability is socially constructed, and that these social constructions can and should be changed--wasn't a paradigm shift. It made perfect sense almost immediately.

What this means is that it was pretty easy for me to see Down syndrome as embraceable human diversity, not a problem, a flaw, a defect, not something to freak out about or want to "solve." It's a component of who Maybelle is, a component that's embraceable. All the bad beliefs and energy about Down syndrome are socially constructed.

Ready-made community: Certainly our friends and families were pretty much, "Down syndrome? Whatever--it's Maybelle!" But the larger feminist community--my students, for instance--only needed the tiniest bit of coaching (like I did) to see things from a feminist disability studies perspective, and now they're all over it. They see Maybelle and there's not a bit of weirdness.

*This wasn't George Estreich's The Shape of the Eye, which I'll review here very soon.

Oct. 13, 1991

2011-10-13T18:58:00.000-05:00

Twenty years ago tonight, I was strolling through the University Center at Tennessee Tech with my friend Jennifer. Two guys we knew walked up, wearing very nice suits. They looked good. Jennifer already had the hots for one of the guys. The other one was a guy I'd seen on campus a lot, and been sort of curious about. Curious, but skeptical: he seemed like trouble, like a slacker, someone who played a lot of music on the patio at Tech and didn't actually go to class.

But he had an energy, a vibe, that I found intriguing. His whole presence seemed to sort of vibrate with it. He looked damn good in a suit. And he was eyeing me like, "Hey, baby."

In fact, he probably said, "Hey, baby."

They invited us to go to one of the few restaurants open in Cookeville, TN, late at night: Waffle House (of course I had no idea then what significance this restaurant would have for me twenty years later). Jennifer and I thought, What the hell. Actually, I suspect that Jennifer though, OMG, I'm going to get to hang out with Wilhelm! I know that I thought, What the hell. I've got nothing better to do tonight. And this guy is really attractive.

At the Waffle House we ordered some coffee, and the Waffle House meal I always got those days: one piece of raisin toast, and a poached egg (really? Yes, that's the kind of thing I ate back then). And then we made out. In the booth at the Waffle House. Jennifer and Wilhelm went at it, and I looked at the guy sitting beside me and thought, again, What the hell?

As it turns out, we weren't all that skilled at kissing each other. Even today, kissing isn't our strong suit. But we were very, very interested in getting to know each other better. I was the super rule following emphatically feminist good girl. He was the guy who challenged all rules on general principle and wanted to explore all the forbidden spaces. It was a terrible idea for us to get together. Really, who would have thought that this could work out?

The next day he sent me a handwritten note inviting me to...let's just say, to come hang out with him. He'd even written a song about it, which he performed for me (and others) on the patio at Tech.

And as of today, we've been together for twenty years.

Happy anniversary, Biffle!

A quick post from on the road

2011-10-13T07:34:00.001-05:00

I'm writing from a hotel room in Mankato, MN. I'm here for the Feminisms and Rhetorics conference, where I was invited to give last night's keynote address (which I ended up calling "Feminism and Zines: An Origin Story (and why these stories matter)"). It was great fun, with a lot of interesting conversation with the participants both during my talk and in the Q&A after.

Special shout-outs to:

Amy Mecklenburg-Faenger for being an outstanding scholar who helped me accidentally discover some of the historical feminist predecessors to zines.
Heather Trahan for having a great post-lecture conversation with me in line at the noodle shop, and in our walk back to the hotel.
Nina Krasnoff and Cate McCann for letting me show off their fabulous informal publications to a crowd of very receptive scholars.
Cate Bush for taking a totally last-minute picture of the publication she and I produced as girls, The North Dixien, so that I could include it in my powerpoint (damn, were we adorable).
Kirsti Cole for putting on a great conference, inviting me to speak, and then having some of the exact same questions/frustrations with social change that I'm having right now. So we're going to keep talking.

And here's one final thought I want to share (Biffle, don't read this): travel is incredibly luxurious. It takes a long time to get from Charleston to Minnesota--I was in travel mode yesterday from 6 am until 2 pm. What that meant is that I was sitting in airports and on airplanes for hours and hours. And here's what I discovered: nobody was calling me. I wasn't checking emails. No one was asking questions--I had no scheduled appointments to keep track of, no rescheduling to do because of unexpected emergencies or the needs of important people. There were screaming children near me, but I didn't have one bit of responsibility for them--they could scream, shriek, run around, whatever. Not my job. All I had to do was what I was told: line up for zone 3, go from gate B8 to gate B13. Just being in travel mode felt like--feels like--an amazing vacation.

A Better World

2011-10-11T09:49:00.012-05:00

I have a tendency to write in multiple directions (read: chaotic, non-sequitur, random, etc.) To avoid that in this post i want to tell you the themes of this post right off the bat. They are as follows:

-This is a post about my experience with individuals with Down Syndrome.

-This is a post about a game played by an Indigenous people.

-This is a post about the current American cultural climate.

When Alison and i went in for our one (and misguided) prenatal test, i looked at the ultrasound and knew that Maybelle had Down Syndrome. Well, okay, i didn't know it, but some intuitive hunch suggested she did. Even before the tech running the test started to do something i didn't understand--in this case to use the mouse of a sophisticated computer to measure the distance between Fetus-belle's spine and back of the neck--i was looking at that screen and had observed that something in that same area just didn't look...like it should.

I attribute that untrained, but accurate observation both to having known a few folks with Down Syndrome while i was kid and to having what i like to think of as a fairly astute visual intuition. You see, folks with Down Syndrome have a pretty distinctive neck, you know? When you have D.S. the back of your head is not quite as round as other people's. Your back isn't as articulated from your neck either. So in other words, instead of being all curvy and stuff, the back and neck and the back of the head for a person with Down Syndrome forms one nice well-organized plane.

Like i said, I know this not because of study, but because when i was growing up i was around quite a few folks that looked like this. That's because i used to play a gig a couple of times a year for a group of folks with intellectual disabilities. I was hired by a man named Jimmy Holt who was the host of a television show in Nashville. That show was called The Tennessee Outdoorsmen. Here, for your viewing pleasure is a link to a Youtube video with the intro of the show. (This particular version of the song Cumberland Gap is played by my first banjo teacher Jim Knolls, btw.)

So Jimmy was one of the hosts of the show, but he was also a member of the City Council in Nashville. I don't know why, but a couple of times a year Jimmy would host a fishing day for folks that, back then, we called "retarded." I was always enlisted to play this gig.

The first time i played it i was probably right around 12 years old. Up to this point, the only person i knew that had Down Syndrome was a kid my parents had worked with. His name was Tommy and my parents helped Tommy's family with a sort of therapy used at the time. It involved having a one person for each arm and each leg and the head of the "patient." Each person then slowly rotated the arm or leg or head of said patient as yet another person slowly spoke to them. I don't know if this is still in use or not, and don't recall if i'm remembering it correctly either, but you get the idea. Anyway, before playing Jimmy's show, Tommy was the only person i knew well who had an intellectual disability. I remember that i liked him very much.

On the other hand, i remember finding the fishing party a little distressing. I was a kid around adults doing an adult's job. I was also a kid around 30 or 40 people that did not act like most other folks i knew. They acted like Tommy. They spoke strangely, they moved differently than i did, they weren't shaped like most folks i knew. They were kinda rounded and everything about them was a little shorter than most people.

And they were avid dancers.

I would play the banjo, and as i think back on it, i don't think i've entertained a crowd since

that were as enthusiastic about dancing as were these folks. Occasionally, one of them might come up into the area i was playing and, slowly but methodically, reach out to touch my banjo. I remember being scared by this. Since i was playing there in front of a microphone i was unable to move away, so i recall just kind of...recoiling...as if that interested person were a curious but possibly dangerous predator and i was some sort of prey that was standing stock still, holding my breath and hoping to not be noticed. All this, however, was quickly normalized by my aforementioned teacher and bandmate, Jim Knolls, who looked over and mildly said It's alright. He just likes your banjo.

By the second year i was doing this gig i was quite comfortable with everyone. Now, I'd been raised "right," so i knew that there were such things as "rude questions." The things i wanted to ask about these people seemed like "rude questions," so i'd never really asked why these folks were the way they were. Privately, however, I'd gone through my own process that went from mild fear of the unknown to a dawning recognition that these were people just like anybody else. In other words, they didn't bite.

It might have been year three when i finally asked a question that had worried me for some time. It went like this:

Like I've said, this was a fishing day for people with intellectual disabilities. Jimmy and other various area fishermen took these folks out in their boats and they fished for Bream or Crappie--easy and plentiful (and delicious) fish. When everyone had successfully landed a few fish they all came back to the dock to enjoy a fish fry and we played music. While the fish (pre-prepared, not the fish that had been caught that day) was frying or grilling, and while we played Rocky Top yet one more time, Jimmy would take each person's catch and weigh it. Now, you should know that neither Bream nor Crappie are big fish. Most of them are about the size of your hand. But Jimmy'd hold up a string these fish and, over the microphone, enthusiastically announce 438 POUNDS! And the proud fisherman would clap and jump up and down and would seem quite pleased with his and everyone else's amazing catch.

The problem was, I just wasn't sure how i felt about this slight deviation from the truth.

So, during that third year, i took Jimmy aside and quietly asked him if he didn't possibly think it was cruel to lie to these people the way he was doing. Now, lemme tell you, Jimmy--like many of the people i grew up around--was a spittin', fishin', ball cap wearin', football lovin' good-ole-boy. At that time this was what i thought most people in the world were like. If one were to travel to France, one would meet someone much like Jimmy Holt, except he might speak a little funny. As time went on and i eventually grew to become a traveled and educated citizen of the world, i've come to a different worldview than the one with which i grew up. For instance, i now know that while there might well be a French version of Jimmy Holt, the French version would be markedly different in particular aspects. I also know that some of my notions of what society should be like are not, shall we say, in line with notions that might be held as gospel truth to someone like Jimmy Holt. And, yet, still another thing i know is that many of the people i grew up around, if one forgives a few rough spots, were some of the finest people in the world.

Case in point: When i took my question to Jimmy it was just a tiny little drop in time, but i've got to tell you, although i was unaware of it at the time, this question held the earth in balance. I've already mentioned i'm an unintentional, but astute observer of people. I was going to pick up the tiniest Gestaltic inflections in his answer. Neither of us knew it, but the stakes were high. I said, "Mr. Holt, do you think it might be cruel to lie to those folks about how much their fish weigh?"

And do you know what he said?

He simply looked at me and said "No."

Now, i don't know about how you would have taken that answer, but for me this was a biggie. Why? Well, the reasons are not all that complicated, but sometimes there can be a full cosmos in even a two letter word. Jimmy handed me that cosmos. For one thing, he didn't answer me like i was a kid. He looked me in the eye and accepted me as an equal. His body didn't betray a hidden trace of resentment for being asked a question that might have been a little accusatory. His bearing and tone let me know that i had asked a legitimate and thoughtful question, and deserved a legitimate and thoughtful answer. With that "No" Jimmy conveyed to me that he was enjoying himself and the people with whom he was fishing that day were enjoying themselves, too. I understood there was no condescension there when he weighed those fish. I understood, as a friend of mine says, that everyone is a person in this world.

* * *

I don't remember the name of the people, but there is an Indigenous group of folks in Indonesia. They live, just like any good group of Indigenous folks live, and that's well away from the rest of us. Like most cultures, these folks have games they like to play. Many of the games are used to teach everyone how to hunt and fish and cook and make clothing. In other words, they're games that make learning fun, and help ensure the group's survival. The reason i bring up these folks up is because one game they play in particular. I don't know the name of the game, but I recall a couple of things about it. I know that it involved throwing something round somewhere else. I know the game's only purpose was for fun. There was no larger agenda. No cultural lessons. No paychecks. Just enjoyment. But the one thing i really remember about that game was this:

It doesn't end until everyone wins.

Our house at 7:30 a.m.

2011-10-10T20:02:00.000-05:00

Waffle House

2011-10-09T18:46:00.000-05:00

Okay, I'm truly committed to the 31 for 21 project, but I'm finding it difficult in October--the busiest month of all time for me!--to blog every day. I like the challenge, though, because it's helping me to confront my own perfectionism. Here's a quick, non-perfect post.

When Maybelle woke up from her late nap today, she was still sort of exhausted, and also a combination of grouchy-hungry. We hadn't had a lot of time for the whole family this weekend, so we decided to celebrate the three of us being together by going to Maybelle's favorite restaurant of all time: Waffle House (or "House," as she sometimes calls it).

We didn't even put her shoes on (since Waffle House probably doesn't care that much about the "no shirt, no shoes" business). We hopped in the car, and there we were. She read the menu as she likes to do--identifying the coffee, the waffle, the eggs, the orange juice--but it seemed to make her realize just how hungry she was. She got grouchier. She got demanding. She said things like, "I want to waffle!"

And then, the server brought a fresh, hot, plate sized waffle to our table. And Maybelle raised her hands in the air and screamed with delight. "Waffle!" she said. "And syrup!" I can tell why she's so well loved in that Waffle House: how often do they get that kind of response?

She and I were ostensibly sharing the waffle, but I got only one quarter of it, and she ate the rest. And looked at me suspiciously while I ate my tiny little part.

Bird

2011-10-08T18:50:00.001-05:00

We've been working on getting Maybelle to say full sentences. She's able to do so, with a bit of coaching--or sometimes just with encouragement--but her repertoire is limited.

However, it's expanding, and she's becoming a bit more experimental. Here's what happened this afternoon:

We went to visit our friends Claire, Larry, Adam, and Nina (and as a fun, unrelated side-note, when she stood at the base of the steps to their front door, she looked up, saw where we were, and clapped her hands in delight! She also said, "Boo!", as that's her favorite game with Larry.)

While we were there, Claire read the book Are You My Mother? to Maybelle. Claire is a dynamic reader, and Maybelle seemed interested, responding appropriately to the plot. The main character is a baby bird. When the book was finished, Maybelle looked at me seriously, and said,

"I want to go to bird."

She was signing as she spoke, so I'm pretty sure those are the words she said. Hmm. I want to go to bird. What does that mean? Nina brought a stuffed animal bird down from her room, but it didn't satisfy Maybelle. She looked at me and said, "I want to bird."

Claire and I tried lots of things: "You want to hear a bird? You want to read the bird book again? You want Claire to make the sound of a bird? You want to look at pictures of a bird?" Nothing seemed to be exactly what Maybelle was wanting, but Claire sent the book home with us in case we have some sort of insight.

At any rate, we're very proud of Maybelle for her growing language skills. And that's our "31 for 21" for today! (Two days in a row--doing good!)

October is Down Syndrome Awareness Month

2011-10-07T13:32:00.007-05:00

Alison and i are ostensibly taking part in Down Syndrome Awareness Month by doing something called "31 for 21." In other words, we're supposed to write a blog post per day, for the 31 days of October, about Down syndrome (which is indicated by an extra 21st chromosome. 31 for 21. Cute, huh? Beats the prosaic "Blah, Blah Awareness" trope anyway.)

Well anyway, as you can tell, we've been sucking. It's the 7th now, and have you seen a D.S. blog post on here? Nope. But if i've learned anything in life it's that failure is just another way to say Hey, i'll get it right one of these days, so here goes...

Back when Maybelle was born and i was doing lots of (internet) research on Down syndrome, i found a lot of helpful stuff. One thing was a comment in some fairly academic literature that said, more or less, entirely disregard anything written about Down syndrome before 2003. Another was a chat room of parents that had kids with D.S. One of the threads was called--and get ready for this--Favorite Things About Down Syndrome. So while i was at that time still in that typical-person place of oh, bless her heart, these folks had moved on. And, nay, not only to acceptance, but past that and on into what most folks would never consider: favorite things about Down syndrome.

Maybelle is three now, and although i've had a crush on her since the moment she was born, i'm still learning more and more about how i, too, have favorite things about her and about Down syndrome.

Now, before i list my favorite things about Down syndrome, i guess i ought to mention one thing. That is i need to say that one's essence shouldn't be defined by their disability. In other words, we don't say hey, look at that blind guy! And, no, you don't say "visually challenged," either. What you do say is hey, look at that guy that's blind! The tiny difference is that by saying the second example you're using "person first" terminology. The person and then the modifiers. But, making a list of things one loves about Down syndrome is dangerously close to not using person first terminology, isn't it? Well, here's my answer to that: When i hear folks from the north making fun of folks from the south, i tell 'em to hush up. Then they'll say, but you make fun of people from the south! And then i say, yeah, but i'm from there. I invoke that same license here...

* I love Maybelle's tiny little nose.

* As a person that's a little slower to catch on to physical activities than boring old typical people, i love the way she hasn't learned to alternately swing her arms when she walks. As is, she wildly swings both her arms at the same time and it just imparts such a joie de vivre.

* I love what we refer to as Maybelle's 12 Second Delay. It takes a while sometimes for a question or request to get processed, and that amount is usually 7,8, 12 seconds later. So you might ask, Maybelle, do you want some ice cream? (cue Jeopardy! music, while Maybelle continues doing the exact same thing pre-question for just a few more seconds and then...) as if you have just at that instant asked the question, she looks up with delight on her face and says Ice Cream!

* I love Maybelle's hands, and in particular her little short thumbs.

* I'm stealing this one from that parent's thread i mentioned above, but i find that i love the fact that as a parent of a child with Down syndrome i get to celebrate each and every fantastic development Maybelle goes through. Most parents wake up one morning and their kid is walking. Well, i get to remember not only the joyous moments of Maybelle's first step, but the moment she took two steps, and the moment she took five steps, and so on. I'm getting a chance to really appreciate development i would have otherwise taken for granted or never have noticed.

* I love Maybelle's challenges with pronunciation. We have a Sesame Street book called It's Not Easy Being Big, and, which, by the way, is a tour de force of randomness. One of the pages simply says "Super-duper Snuffle-upagus!" When we read that page, we say Super-duper Snuffle-upagus! And Maybelle says back to us Schoo-fa-du-shofness! Schoo-sha-foof-a-tious! I mean, how cool is that?

* I love that Maybelle takes the time to listen to everything...well, except her mom and dad. If you're at the park for a walk with the Bean, occasionally you'll find that she's just sat down and appears to be doing nothing. It was only when one day, instead of encouraging her to get up and continue the walk, that i sat down with her and was quiet did i hear what she was hearing. The breeze in the tree tops, the myriad songbirds that were out that day, a squirrel rooting around in the grass. I realized suddenly that all those sounds were beautiful. Thanks, Maybelle!

* I love that Maybelle is super-humanly empathic. Maybe that's what that extra chromosome does: makes a person empathic. She knows exactly how far she can push someone. She often points out people crying in public. She can distinguish--from two hundred yards away--a dog bark of greeting from a dog bark of warning. And if you ever seem sad, you might just well have someone quietly show up in your lap for some quiet hugs.

* Down syndrome has shown me that Maybelle is very much her own person in this world. I wouldn't have recognized it had she been typical. I would have pushed and crushed and demanded and been frugal with my praise and that was because i used to think people were things to be molded with as much force as it took to get them there . As is, because of Maybelle's attitude and the few extra challenges she more-often-than-not joyously accepts, i don't push or crush as much as i use to. Now, I look at Maybelle, and myself, and all the other people in this world from a more curious, positive and accepting place. Thanks again, Maybelle!

RGT

2011-10-05T19:23:00.001-05:00

It's rare to meet someone and immediately feel comfortable. It's rare that someone has a vibe that instantaneously puts me at ease, makes me feel chatty, makes me want to settle in and talk. And if the thing you get to settle in and talk about is feminist disability studies--what could be better?

Rosemarie Garland-Thomson has that vibe, and if you're in the Charleston area, I strongly encourage you to come out tomorrow night and hear her talk:

Buddy Walk 2011

2011-10-02T19:16:00.001-05:00

Today was our fourth Buddy Walk. It's amazing every year to see how much has changed in Maybelle, and in our family. I know that in past years I've written reflective posts about the changes, but this year let me share visually (you know, with lengthy captions):

While last year Elizabeth and I held Rosemary and Maybelle on our hips and danced around ourselves, this year Maybelle heard the DJ playing "Hey Ya," ran to the dancing area, and was inclined to stay there as long as possible. She danced and danced and danced. No assistance necessary.

Last year we were amazed that she could walk the whole mile by herself. This year she marched, walked forward, walked backward, and would often grab Biffle and I by the hands so that we'd swing her into the air. Biffle noted that last year, all she could say was, "Whee!" This year, to get swung, she had to say, "1-2-3-4-5-6-7-8-9-10!", and she'd often say it really quickly so that she'd be in the air sooner.

The DSAL Buddy Walk always has a ridiculous number of jump castles. Nine this year. And this year, Maybelle went in them. There were wonderful teenagers in every jump castle helping the kids to navigate, and they got Maybelle to the top of this slide, and she came down super fast. And loved it.

But let's be honest--this year's Buddy Walk wasn't all that different from previous years. It ended with me and Biffle crying about how proud we are of Maybelle, and how happy we are to have her in our lives. Meanwhile, Maybelle was wriggling and saying, "Down! Down, please!" because she was ready to go back to the dance area.

Mondays

2011-09-26T07:40:00.003-05:00

I don't want to step on Alison's post below (which she just posted last night), but her comments have prompted me to add some stuff. Random stuff. Really random stuff. I'm going to see if i can contain myself to one paragraph per thought.

First, i'd like to say that since Maybelle was born i haven't really been blogging anything. That's a shame cause i used to use Baxter Sez as a kind of clearing house for ideas, and now i don't. The upshot of this is that my head gets full of stuff and then it doesn't get to go anywhere. In other words, my head becomes the kind of closet which every member of a household puts the stuff they don't necessarily need but still don't want to throw away: a confusing space full to the gills with what looks like junk, but we all suspect someone, somewhere might someday find some of it useful.

Second, and somewhat connected to the above, is the fact that i've kind of unofficially pronounced Mondays as my day off, so maybe i'll use part of my Mondays as time to blog. (Also, i'd like to add--since i'm experimenting with this day off/blogging thing--i'm not going to proofread anything here. More on this notion in the next paragraph.) Anyway, it's taken me a couple of years to recognize this, but as a self-employed person it's up to me to decide when to take time off. Add to this the fact that one of my jobs is as a musician, and the sum turns out to be you never take time off. The woodshop is pretty easily defined as a daytime thing. The nighttime and weekends, however, are music times. Like i say, it took me a while to notice, but my lack of prescience about my own scheduling led, in short order, to a 60, 70, even 80 hour work week. It's become obvious to me that i needed some down time. I'm still not entirely using Mondays as an actual day off, but at least i'm starting to treat it as a day in which i try to do only stuff i want to to do rather than have to do.

Third. Okay. Back to proofreading. I recall seeing one time something written by Kurt Vonnegut. It was in the form of an advertisement. A paper company--i can't remember the company and i'm not going to look it up--used to have advertisements which simply had writers writing about writing. I remember one of the ads featured thoughts from author John Irving. He wrote of how he taught himself to spell. His method was to make a tick mark in a certain dictionary every time he looked up a word he needed to spell. When that word got up to so many tick marks he sat down and write the word a dozen times and, in that way, was able to teach himself how to spell that word and quit looking it up. Vonnegut used his ad to talk about types of writers. He said there are two types of writers: mashers and hackers (all of this is coming from memory, btw, so don't hold me to accuracy) Mashers, he said, were writers who more or less threw up on a piece of paper. If it was in their head, they wrote it down. Later they went back and edited themselves. Hackers, on the other hand, were meticulous writers who carefully chose every word. Slowly. One at a time. Well, i'm both. And for the record, today i'm doing neither.

Fourth. I'm very happy Alison and i are in the process of becoming members of our church. Not only did we actually need to do something together, as a couple, but we also needed to do it to keep us interested. Much like exercise or playing a musical instrument--or anything really--if you don't keep adding something to an activity you eventually go stale and it stops being productive and becomes akin to something more like a habit. Or like a background noise you can't do anything about it. That noise squeaks or ticks or whatever and you just kind of tune it out, but there's always a piece of you that's invested in sitting there tuning it out. I didn't want this to happen to our church experience. Providence--perhaps even divine--put Charleston UU in our lives in a particularly vulnerable moment. The novelty of Maybelle had kind of worn off as she became more of a real person and less of baby. We were still fresh from the life-altering trauma of a brain tumor and surgery. We needed something new, and particularly something meaningful. Something healing. Something that bound us together. That healing, binding thing turned out to be church. Still, even though we'd only been at it for a few months, i could this new thing becoming stale, habitual. For it to continue being useful, we had to keep growing. The process of becoming members is that new thing.

Fifth. I'm getting some new equipment for the woodshop and it's very exciting. I found a really good deal for some gear on Craigslists. Bless Craig's heart. I've been no fan of purchasing a manufactured thing when i could actually just as easily build it myself, but time has taught me that sometimes the phrase just-as-easily needs to be looked at, inventoried, if you will. The deal is, my body has started letting me i can't do some of the things i used to do. For instance, i used to have a dangerous set up in which my router table was nothing more than the router and its base screwed to the bottom of an insert and held by gravity in a cut-out on my outfeed table. Every time i wanted to use the router freehanded i had to take it off this contraption i'd built. Likewise, every time i wanted to adjust it when it was in the table i had to get down on my knees and crawl up under the table, making tiny and inaccurate changes, testing to see if my adjustment was correct, getting back under the table to readjust when my changes weren't accurate, and so on. Enough! Now, i'm going to have not just one router but three, and two of them permanently mounted to incredibly accurate, top-adjusting router inserts. Add to that a new table saw with safety features that were the stuff of science-fiction when my old rockwell was manufactured in 1950. It's a lovely saw, that old rockwell, and has been a loyal worker, but it's seen too much use. The bed is no longer flat and the arbor--get this!--is actual threaded in the wrong direction. If i didn't tighten the blade with 4 thousand foot pounds of torque it could have actually unscrewed itself while in use. It never did, but if it had...well, let's say it wouldn't be pretty if a 10" saw blade, spinning at 4300 rpm, decided to take flight. Finally, added to all this beautiful stuff, is two brand new, dead flat extension tables and a dedicated remote controlled dust collector. No more crawling under the table to open a blast gate! I've only just last week healed from my latest head wound from having to back out from under the table and rising up just a bit too quickly.

Sixth, last and most randomly. I hope the GOP and the Tea Party eats itself. For twenty years now i've watched as a particular segment of our populace and the government that represents it adopts the latest brand of us-against-them politics. I don't remember much before Reagan, but maybe back then the Republican party had a set of actual ideals. Since then--at least to me-- it seems that they have latched on to any cause du jour/marketing scheme that could keep them in power. Whether it was the farce of "family values," or a stance against abortion, or railing about welfare moms, terrorist threats we helped create in the first place, read-my-lips-no-new-taxes, anti-gay, birth certificates, presidential blow jobs, global warming is a lie, America-is-a-Christian-Nation, the ACLU is the devil incarnate, and we're being attacked by creeping socialists, the republican party and it's extreme right members in the ridiculous Tea Party have adopted anything that both divided our country and solidified a base of the most ignorant, fearful sonsabitches in the nation. It's time someone pulled down the pants of this collective bunch of yahoos and spanked the crap out of them--and they'll back me up on the value of corporal punishment, i'm sure. Listen people: you can't define yourselves simply by what you hate and expect to be a whole person. My hope is that these few, radical, mislead, undereducated, hate-mongering folks that keep hollering out at these GOP debates come to define--and expose--what only pretends to be the legitimate, thoughtful group that calls itself the Republican Party.

I'm going back to the wagon, boys. These shoes are killin' me.

Unitarian Universalists

2011-09-25T20:12:00.001-05:00

This afternoon Biffle and I began the very odd process of becoming members of the UU congregation in Charleston. It's odd mainly because I'm considering joining a church. As we've discussed here before, we'd feel more comfortable if it had some sort of other title than "church"--cohort, gathering, cult, etc.

But we like it there, so we're moving forward. We want the official nametags. Today's meeting was mostly a get to know ourselves and each other kind of event. We all went into separate spots in the building and wrote about why we were there, and then we got together and shared. So I thought I'd share my thoughts with you--as I wrote them, I reflected, "This sounds like something on Baxter Sez."

WHY AM I HERE?

1. Because of Biffle. I would never have come on my own. I wasn't missing a religious community--in fact, I was/am pretty skeptical of religious communities because I see people who've been badly damaged by religion. Plus, much religion really chafes at my approach to the world.

2. Because of Maybelle. She loves it. Seeing how happy Maybelle is here was a big part of why I was willing to come back a second time. Plus, she was openly welcomed and included--not looked at in a pitying way at all. That would have been a deal-breaker.

3. Because of me and Biffle. I was surprised to find that church services are a space where we connect--sitting side by side, sometimes giggling at the hymns, sometimes getting surprisingly teary. We could have an ugly Sunday morning, but coming to church gives us a second start and a feeling of us-ness.

4. Because there seems to be no religion here. It's all vague, questioning, accepting, and I like that. I don't feel that I've necessarily learned anything being here, but I haven't been offended, and I do get the occasional nugget. Social justice seems to be quite central, and that's one of the central things in my life, too.

5. I'm not at all religious, but I'm open to spirituality--to the notion that I'm not the center of/the most powerful thing in the universe.

6. At a meeting over the summer, someone shared the joke that Unitarians are atheists who have children, and that resonated with me. But I don't come to the UU church because I want Maybelle to be "acceptable," to have an answer to the constant Southern question of "Where do you go to church?" I want her to be a radical activist and piss people off!* But I want our family to have a few different communities that support us all as valuable people in the world.

Thoughts that came up during the conversation: I had few friends and was widely ridiculed during my junior high years. It wasn't until high school that I met a crowd of artsy/nerdy/misfit friends who welcomed and embraced me. I've been sort of assuming that this is the nature of junior high--but today's conversation led me to think that Maybelle might not feel totally reviled in junior high if she has an artsy/nerdy/misfit bunch at the Unitarian church that she can hang with and go to camp with.

*One of the other couples there shared that their daughter discovered that the family of one of her friends won't let her hang out with them anymore because she "worships the Devil." My initial thought on hearing this story is that I hope Maybelle will roll her eyes and say, "Fuck you!" if someone ever says this to her. But then I remembered Cindi May's very good advice: we need to teach Maybelle to look sympathetic and concerned and say, "I'm sorry that you're so ignorant" when she hears things like that. Much more effective, plus you get to feel morally superior.

Sexual terrorism

2011-09-21T10:56:00.000-05:00

I haven't taught my Gender and Violence class for a couple of years, so much of it feels new to me. Last night we were discussing an essay by Carole Sheffield called "Sexual Terrorism." Sheffield defines sexual terrorism as "a system by which males frighten and, by frightening, control and dominate females." She goes on to say that "women's lives are bounded by both the reality of pervasive sexual danger and the fear that reality engenders."

The statistics for violence against women are bad. Like, bad. Violence against women is incredibly pervasive. But what's even more pervasive is fear, or a consistent awareness among women of the need to make choices that will "keep them safe." (Please note that those are scare quotes from me.) Every time I've ever discussed this essay in class, I ask my students if they've experienced this low-level, pervasive fear. Every time, the hand of every woman in the class goes up. And that's what happened last night.

I asked them to tell me some examples. They had story after story:

"I'm not sure if I'm just being weirdly paranoid, but I won't park in a parking garage unless I'm near an elevator."
"Of course I won't ever leave the library alone after dark."
"My friends told me about the bars that are roofies bars or Ambien bars, so I try not to ever go there."
"I never let anyone I'm not really close to know where I live."
"I heard a guy tell his girlfriend, 'I don't care what kind of self defense class a woman takes. If I wanted to rape her, she couldn't stop me.'"
"I got catcalled in broad daylight by guys at a fraternity house, and every time I walk by there, I'm afraid. They felt okay yelling things at me during the day. What would they do if they saw me at night?"

I also had five different students in the class--five students--tell stories of cars pulling up beside them and guys rolling down the windows and saying, "Get in." Not, "Do you need a ride?", not, "Can I take you somewhere?", but "Get in." None of the students got in. But what the fuck were these drivers trying to do?

At a certain point I had to stop the storytelling. I suspect we could have gone on for another hour, but class time was limited. I noticed that as they were telling their stories, many of them were laughing, as were folks in the class. There's a way in which humor is a defense mechanism: if we make it funny, it's not as scary. But I shared with them that I was listening not as their peer but as a professor, a mentor, and a parent, and I didn't find the stories funny at all. Those stories tell me about the world that we're living in, a world in which women consider it normal--even sensible--to spend much of their time afraid. And as a culture, we don't consider that a problem. We consider it just the way things are.

That is truly offensive and fucked up. Having been away from this conversation for two and a half years, I'd let my cynicism diminish. I wasn't calloused enough. I was wide open to the outrage that is the appropriate response to hearing a room full of valuable human beings tell you about the world they live in which encourages them to be afraid, but doesn't actually provide any meaningful protection from what they're afraid of.

Dogs

2011-09-17T07:05:00.000-05:00

Even now I can recall with stunning clarity two events in my boyhood that help prove that every kid needs a dog.

The first:

When i was a kid my dog, Joy, slept on the garage steps. Like most steps you're going to find in a garage, these steps weren't much to look at. Just a narrow place that got you from one point to another, covered in whatever excess carpet had lately been put somewhere in the house. They were sandwiched between a large air conditioning/furnace thing and a set of floor to ceiling shelves. The air conditioning thing purred and the shelves contained a supply of the things that kept you alive: cans of green beans and limas, tuna fish, a good supply of Vienna Sausages. A key to the house hung there in a secret place. The outside shoes were kept there, too, and when the yard needed mowing or the house needed tending, my Dad and i sat on those steps to change into the shoes necessary for the job.

Humble as they were, these steps were the major thoroughfare in and out of the house. Joy, being a shepherd and all, recognized this and made it her abode--the better to keep watch on the comings and goings of the house. When she wasn't chasing me on my bike, or the two of us weren't running around in the woods together, that's where she could be found sleeping and waiting and watching.

So i recall one specific day. I don't know how old i was. I might've been eight, maybe even ten years old. An age when nothing that was wrong could be all that serious, but somehow i must've been having a tough day. I went out on those steps looking for an understanding friend.

I can still recall, in the accurate way dreams and memories sometimes afford us, what it was like sitting there on those safe steps and telling Joy--in the most serious of terms--how i was hurting. The carpet was red. There was the faint, but not uncomfortable, smell of feet nearby. The air conditioner was doing its job and Joy sat and listened to tell her my woes. She was a shepherd, and as such, probably had a pretty good grasp of the english language, but i'm sure she didn't understand the half of it. Still, she looked at me with those empathic eyes that only a shepherd has and she listened and listened. I might have gone on for 30 minutes or more. I don't remember, but i know it was a while.

I was old enough even then to know that talking to a dog about your problems was perhaps a stupid thing to do. But i didn't care. I needed a friend and i knew all i had to do was walk out the side door of my house and i'd find one. She never complained or interrupted or took her eyes off me until she knew i was through. What a sweet gift that was. I felt much better. And then we went and played.

The second thing:

Same house. Same Joy. Near to the same age. I was in the backyard messing around. I don't recall what was going on, but my memory says it was a lazy, late summer afternoon when the heat had died down and it was cool enough to not have to have a reason to be outside.

I'm pretty sure i was bored. I use to have a particular hole that i worked on, trying to make it deeper and deeper. I may have been working on that, got bored, moved on. Anyway, somewhere along the way a new activity involving some cheap darts from a dart board that lived in the garage came into the scene. I took them out into the backyard and tried throwing them at a tree. They didn't stick. I threw them in the air but all they did was come back down and stick in the ground. No big fun there. And then i decided i'd throw them into the air in the vicinity of Joy who was wandering around happily as i amused myself. The objective--one i knew even then though i'd only barely admitted to myself--was to see if i could hit her.

I tossed a dart into the air. Joy was sauntering casually through the yard. I felt myself torn between regret and what i now recognize as pyrrhic victory as i saw their arcs intersecting. The collision was imminent.

And right at the utmost point of my horror...well, the dart struck Joy square in her back.

...And she trotted happily along as if nothing had happened. I remember the dart didn't quite stay upright the way it had in my sick projections. Instead, it just kind of lulled. It flopped around like a tranquilliser dart in a Mutual of Omaha Wild Kingdom special. I felt sick to my stomach. Joy seemed not to care at all but the idea i'd actually set out to hurt her for my own amusement--my own sick pleasure--has never left me. Except for a rabbit i shot with a new bb gun when i was 13 years old, that was the last time i've harmed, with malicious intent, an animal.

For some reason a phrase that has always stuck with me is Mark Twain's preface to Huckleberry Finn, in which he writes that people "trying to find a plot [in the story] will be shot." In an attempt to not moralize i'd like to say the same thing about these two stories here, but i'm not good at keeping my mouth shut. Still, i'll keep it short and just say this: We humans do a pretty bad job of taking care of each other. There is no better example of caring, nor as gentle a teacher, as a dog.

Benya/Bobo

2011-09-13T20:16:00.001-05:00

Last Monday night, in the middle of the night, Benya died. It was unexpected, and we have every reason to believe that it was quick and not agonizing.

We are pretty devastated. Benya was only four, and such a beloved, integral part of our family. We knew that big dogs have shorter lifespans, but we felt certain we had years ahead with Bobo. We've reflected on the extent to which the Bobo had to take a backseat after Maybelle came along. I guess this is what always happens when a child enters the family, but we both feel less than ideal about it. Biffle did some research and believes that Benya died from an adrenal gland issue that we might have caught if we'd been more attentive. She'd been increasingly inactive, but we just hadn't really hadn't taken the time to notice. The Bobo still seemed to take it all in stride.

Benya had many talents: tolerance, a good attitude, and ferocity when needed. But let's talk about the Bobo's truly astonishing talent: she was the perfect dog for a home with a little kid. This was a talent that we didn't know about when we got her, because she was a year old before we had Maybelle. It turns out, though, that she had outstanding kid instincts. Protective instincts? Absolutely. But also caretaking instincts. When Maybelle was little, she'd try to feed Benya from her high chair. Benya wanted the food, but couldn't successfully get it out of Maybelle's offering fingers because she wouldn't use her teeth, and her lips were too floppy. She tried multiple times to use her lips to pry the piece of toast or Veggie Booty out of Maybelle's hands, but she couldn't do it, so I finally took it and put it in her mouth myself. Just last week, Maybelle tried to give Benya a Milkbone, but despite how much she desperately wanted the Milkbone, Benya wouldn't take it from her hands.

That's not due to any training we offered Benya. That was her own choice.

She's been a central, and safe, part of Maybelle's life from the beginning. Bobo was Maybelle's first spoken word. She has offered every kind of unintentional abuse to Benya's body: falling on her, sitting on her, climbing up by pulling her fur, touching and identifying her eyes and nose and teeth. Bobo didn't mind. In recent months Maybelle decided that when we went for a walk, she was the one who'd get to hold Benya's leash. This also meant that when Maybelle stopped, she wanted Benya to stop, and when she started walking again, Benya was supposed to come along. Benya picked up on these requirements almost immediately and was an incredibly good sport.

Biffle has pointed out that due to a dog's short life span, a dog person is going to get to know a lot of dogs. All of them are special, but some of them are special-er than others. Bobo was certainly in that category.

Singer and Lucas

2011-09-11T20:20:00.001-05:00

I've had two requests for more info about my brilliant Lucas/Singer point of connection. Also, it's Sunday evening, and for various reasons I won't go into here, I'm not supposed to be doing any real work. So this is a perfect moment for me to share, briefly, how George Lucas and Peter Singer connect.

George Lucas: we all know who he is. He continues to ruin the Star Wars movies. For instance, in the BluRay release, when the Emperor is shooting lightning bolts at Luke, and Darth Vader picks the Emperor up and throws him into the pit, Darth Vader is screaming "Nooooo!" (It's as bad as you would think.) Here's what one of Trey's Twitter contacts said:

'88 George Lucas calls 2011 Lucas a "barbarian." 2011 Lucas just laughs & stuffs money in its neck pouch.

Peter Singer is a super-famous philosopher at Princeton who has gotten famous from 1) being all over animal rights, and 2) saying that people with disabilities (particularly cognitive disabilities) are okay if you're in a family with one of them and you personally are all emotional, but our world would be better off without them. He keeps saying point #2, despite people (often those with disabilities) repeatedly pointing out how wrong and offensive this argument is, and how skewed and inaccurate his evidence is.

Singer, like Lucas, gets that pissing people off just creates more money for its neck pouch.

Update #1: Michael and Jamie Bérubé

2011-09-11T13:07:00.000-05:00

Whew, folks, it's been a big several days since the last post.

The good news:
Michael and Jamie Bérubé were in town last week. They gave a talk Tuesday night to a packed, packed, standing room only crowd, with folks (me included) lingering out in the lobby, ears turned toward the open door, picking up a random word here and there. I was excited for multiple reasons:

People on campus and in the community are interested in disability studies! They're eager, ready to know more, ready to consider how to make the world a better place for people who operate in lots of different ways.
The people who came to the talk saw that this was popular. A buzz was created.
Most important excitement: this interest and this buzz will directly benefit CofC's REACH Program, which I've said before, and I'll say again, is the leading program of its type nationally. And I am extremely excited to get to help promote and support such a great program.

Michael and Jamie were lovely guests. You might notice from the previous post that they came to our house Monday evening and visited--and played and sang music--with Maybelle. If you go to our Flickr page you can see Michael reading The Foot Book with Maybelle. The next day I had a great time co-leading a discussion in my class with Michael. Michael appreciated--but then didn't use--my excellent comparison of Peter Singer and George Lucas. (I think the two men are similarly skewed: they keep doing/saying things that everyone knows are awful. They, too, must realize that they're awful! But they recognize that their fame and income rise as long as they keep people pissed off. I can elaborate on this if anyone cares--you'll have to let me know.)

Jamie gave a talk as part of Tuesday night's presentation--his very first lecture on a college campus! I didn't hear it because of the lobby situation I mentioned above, but once I watch the video, I'll weigh in. Let me say, though, that I'm a bit surprised that we're the first place that's invited him to speak. He often travels with his dad, and his dad is often talking about Jamie. If a university is interested in hearing Michael's thoughts about our society's view of Down syndrome in particular, and disability in general, why wouldn't they also be interested in hearing Jamie's thoughts?

Our audience seemed to love it.

House band

2011-09-05T19:11:00.000-05:00

Check out who's playing guitar and who's playing drums in this house band.

Michael and Jamie Bérubé

2011-09-04T05:26:00.002-05:00

I'm cooking up a blog post about gender and little kids, but that's going to have to hold off for a few days, because guess what's happening this week at the College of Charleston:

Michael and Jamie Bérubé are visiting!

(Our CofC Marketing folks designed the flier, so the little bit at the end about "prepare to be inspired"--I'm sure you will be inspired! But I doubt that I would have included that, not being a marketing person.)

I am picking them up at the airport this afternoon. Readers of the blog are probably aware of what a huge influence Michael's work, particularly Life as We Know It and this blog post were for me in the early months of Maybelle's life. Think of a metaphor: door opening, light switching on, orchestras in the background beginning a hopeful swell of music--that's sort of the effect. One of my students (very likely a reader of this blog) said to me on Friday afternoon, "I bet you're not going to sleep at all this weekend!" I have slept, but I woke up this morning with a jolt of adrenaline: they arrive today!

Post prompted by reader comments and the fact that I'm teaching disability studies again

2011-08-28T05:07:00.001-05:00

Two readers made comments on this post. One of the comments is a couple of weeks old, the other came in last night. They're exactly the sorts of comments and questions I'm hoping for in my Disability, Power, and Privilege class this semester, so I wanted to address them quickly.

One is from Cate, who makes a point about the importance of cognitive abilities and says,

I mean, if my daughter's cognitive abilities can be improved enough so that she can live independently, I want that. (Not to say that she can't live independently anyway, but...how many people with DS do? really truly independently?)

That question immediately made me want to look to the general population: how many nondisabled people live really truly independently? This sounds like I'm avoiding her question, and I sort of am, but I'm doing so in a way that makes me reframe my thinking.

I might automatically say that I live really truly independently, but of course I don't. I had a pretty major medical crisis a year and a half ago that required a whole team of people to be in place--even to move into my house--to help manage not only my health but my daughter and partner. These days I'm fairly independent, except for the fact that I'm reliant on Biffle to manage the whole day-to-day living thing. I'm reliant in ways that our culture feels quite comfortable with, so that's defined as independence. And let's rest assured that for anybody who is independent, that's temporary. In class Thursday we discussed Susan Wendell's point, "Unless we die suddenly, we are all disabled eventually."

Okay, not what Cate was actually asking about, but what her question made me think about.

alisondcarr made a comment a few weeks ago. She asked if I knew about an organization called the Sparkle Effect, which is an cheerleading organization that helps high schools create cheerleading squads that include typical people and people with disabilities. She asks,

the inclusion aspect--focusing on ability rather than disability--seems positive. but, does that run the risk of washing over the very thing that makes a person different? cheerleader business complicates this question for me.

Yeah, me, too! As was the case with Cate's question, I don't have an answer here, just reflections. So let me start by saying I love inclusion. Love love love meaningful inclusion. What I'm skeptical of is pity inclusion, the sort of, "Oh, you can't be on the real cheerleading squad, but we'll create a special squad for you, and the typical girls are going to have something great on their college applications because they are so thoughtful and caring!" I have no idea if this is what the Sparkle Effect is about. I've done very little investigating. I'm just wary. (Okay, I just watched a video about one of the founders, and she does seem to be a high school girl trying to create social change in the terrain that's familiar to her--cheerleading--so go, her.)

Obviously, if Maybelle decides she's going to be a cheerleader, I will show up and scream and clap and be incredibly proud. But I'm pushing for the meaningfully inclusive not-completely-gender-stereotypical experience. I hope that Maybelle can be a person not defined either by stereotypes of Down syndrome or stereotypes of gender. So let's rest assured that when Maybelle is 9, she'll be attending Girls Rock Charleston.

August 24

2011-08-24T14:30:00.003-05:00

Here is Maybelle exactly three years ago, just moments after emerging into the world.

And here she is today:

Down syndrome and suffering

2011-08-21T20:05:00.000-05:00

I do love having a blog. In large part this is because I love the way that writing here becomes a kind of conversation. A friend today was sharing with me how grad school made her feel that writing was a completely solitary activity--alone in the library, sitting silently with dusty books stacked around you, with the pressure to churn out brilliant ideas. I felt this, too, and hated it. Only in the last few years have I begun to recognize writing as a community activity, something much like the kinds of conversations I have in my classes. And I've discovered that what I love about my job is the fact that I get to have analytical conversations all the time.

Okay, so on to the point: a reader made a comment on one of my recent posts. The comment was this:

How can you say Down Syndrome does not cause the kind of suffering that panic attacks do when you do not personally have Down Syndrome? I know you are the parent of a child with Down Syndrome but that does not give you the identical perspective of a person with Down Syndrome. Perhaps being smart enough to see and understand the way Down Syndrome may limit a person (for instance it may limit a person's ability to live completely independently/to have true adult autonomy as a person, to have children, etc....)as many people with Down Syndrome are, does cause it's own form of suffering. We are all aware of our own limitations in life; of course we all have them. But most "typically" developing people can fulfill our biological and social destiny to live as free and independent adults and start families if we choose. I know many people with Down Syndrome do live quite independently and have fulfilling lives, but there is also the reality that many people with cognitive disabilities are nevertheless plenty perceptive enough to observe what they are missing as a result of their cognitive challenges.

I guess I just think it's a little patronizing of you to talk about whether or not people with Down Syndrome suffer at all as a result of having DS when you are not a person who has it.

This comment has gotten me thinking. First of all, the reader is right: I don't have Down syndrome and therefore can't compare levels of suffering. Really, you can't compare any kind of suffering between people--suffering, psychological and physical, is such an individualized experience. Biffle can slice open parts of his body in ways that look profoundly painful to me, and yet they don't seem to bother him much at all. "Oh, yeah, I cut my hand," he'll say, as if he'd sort of forgotten that he had a huge new scab. It's impossible to know in any objective way what's more painful: loneliness or hunger? A slipped disk or a torn ACL? A panic attack or a brain tumor?

So I can't compare, and I certainly can't make the claim that people with Down syndrome don't suffer. There's no across the board claim that can be made, because we're all individuals. What I guess I can say is that Down syndrome isn't a condition that has a component of physical suffering. People with Down syndrome don't, as a result of Down syndrome, experience painful physical challenges like those that might accompany cystic fibrosis or chronic fatigue syndrome.

But the reader notes that people with Down syndrome might suffer from the degrees to which they may or may not be able to live independently. They might suffer from a recognition that they're having to work harder, or differently, than some of the people in the world around them. Indeed, adults with Down syndrome have made just such observations.

I guess what strikes me about this is that these kinds of suffering aren't qualitatively different than the suffering many people, with and without cognitive disabilities, encounter. I almost want to say that this is simply part of the human experience. Although we live in a culture that values independence--and many of us value independence--we're all going to have significant periods in our lives in which we're dependent and interdependent. Many of us don't have a kind of free independence as our "biological and social destiny." Along the same lines, we all have areas in which we have to work harder or differently than other people. Is this qualitatively or significantly different for people with Down syndrome? Is it worse? I don't know.

I do know that some of these kinds of suffering are results of cultural biases and stereotypes, and those can be changed. I worked with an adult with Down syndrome who reflected on her father's absence, the fact that having a daughter with Down syndrome freaked him out so much that he removed himself from her life. This was a big deal for her, and incredibly painful, and to some extent this guy's absence--I suspect--was based in his own lack of knowledge about Down syndrome. It wasn't caused by Down syndrome; instead, it was caused by his understanding of Down syndrome and his own choices.

And yet many, many people who don't have Down syndrome have absent fathers. So this, too, is a kind of suffering that's not in any simplistic way caused by Down syndrome.

So while I can't say how my suffering from panic attacks compares to painful experiences Maybelle is going to have--and I agree that saying so is patronizing--I do want to resist a narrative that allows us easily to associate suffering with Down syndrome. I don't think this is what the reader was doing, but I know that in much of the literature surrounding prenatal testing, folks will discuss terminating a pregnancy with Down syndrome as a way of preventing the suffering that the potential person would have to experience. And that, too, is a patronizing and poorly informed assessment of Down syndrome.

Sweet Maybelle

2011-08-19T21:00:00.005-05:00

1,095 days ago, Biffle composed this song for Maybelle. This is probably the first song she ever heard. He's finally recorded a version of it which includes the additions we've made over the last three years.

And in case you're interested, here's what it sounded like very early on:

Let me explain in Maybelle's defense that this initially wasn't a song about how bad she smelled--it was a song about her mother's unfortunate body odor. I'd been through a sweaty labor, and then I got woken up early the next morning for various reasons, and things didn't really calm down long enough for me to take a shower, so I developed a pretty noticeable aroma. In the version of the song Biffle's singing in the video, he's singing as Maybelle, not to her.

From my brother Trey's Flickrs

2011-08-17T13:25:00.003-05:00

Alison Sez: Part six of a soon-to-be-concluded conversation about "A Father's Search for a Drug for Down Syndrome"

2011-08-15T14:02:00.000-05:00

These are some of my thoughts triggered by the NY Times piece called "A Father's Search for a Drug for Down Syndrome" and the responses. I decided not to strive for coherence, because that makes the stakes awfully high. Instead, I'm sharing my process.

I'm a person with a lot of anxiety. For most of my life, I regularly had panic attacks so significant that they got in the way of some life activities. At one point, when I was in grad school, a psychiatrist prescribed me Paxil and Xanax. They didn't work, and they had a lot of side effects (everything from weird sleep with Paxil to, you know, the risk of serious addiction with Xanax--and let me also say that when I'm having a panic attack, I have to take what is clinically known as a fuckload of Xanax for it to have an impact). Years later, as a result of years of specific therapy, yoga, and other sorts of personal/spiritual work, I managed to turn a corner with the anxiety, and I haven't had a debilitating panic attack since...what...2004? I'm glad I'm not taking a drug for anxiety.

I do take daily Keppra pills, which stop me from having seizures triggered by the brain tumor. They have some side effects, but they stop the seizures, and seizures are a big deal, so they're worth it.

I reflect on these drug facts as I think about the possible drug for Down syndrome. I don't have a strong opinion one way or the other. Instead, I have questions. I find myself wanting to determine whether or not I have a framework for determining when drugs are a good idea and when they're not.

Biffle and I have talked about this quite a bit, and so far we've come up with this: drugs are a good idea when they perform an important function that you/your body can't perform without them. There's no way that I can marshal enough willpower or therapeutic intervention to stop having seizures, so I'm taking Keppra. Because the panic attack drugs didn't work for me, I found another set of solutions there--solutions that I find highly preferable. If Paxil had worked like a charm, though, I suspect I'd be a person taking Paxil, and coping with the side effects. So that's perhaps not a firm ideology, as much as an accident that ended up turning out well.

What does this tell me about the possible drug interventions for Down syndrome? I'm not sure. Here's the thing: Down syndrome isn't a disease, and it doesn't need to be cured. I value the ways in which Maybelle is different than typical folks, differences that may be linked to Down syndrome or may be linked to her own personal talents, her upbringing, the presence in her life of a bunch of funky, wonderful, weird people--etc. I don't want those differences eradicated. Furthermore, Down syndrome doesn't cause the sorts of suffering that panic attacks caused in my life. To the extent that our culture is viewing Down syndrome as something that needs to be fixed, then I'm not on board.

If this drug would shift Maybelle's cognitive functioning in ways that would make learning easier for her, I just don't know what I think about that. My initial reaction is that this doesn't seem important enough to me to justify the risk of drugs, or the risk of eradicating any of Maybelle's beautiful differences. And yet Biffle, as an adult, has begun taking drugs for ADHD, and his experience has been that the shifts in his cognitive functioning are wonderful, sort of miraculous, like, "OH! This is how people get things done in the day!" (Perhaps he'll write about this.)

I have no problem with Biffle taking those drugs, because he's an adult making decisions for his own life. So perhaps my easy answer to this drug question is that when Maybelle's an adult, she'll get to decide what sorts of medical interventions she wants.

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Alison Sez: A heads up

2011-08-13T08:46:00.000-05:00

I wanted to let folks know that our conversation about "A Father's Search for a Drug for Down Syndrome" is just about finished. If anybody else out there has been planning to share something, now is the time! Soon we're moving on to whatever random topics strike our fancy.

Goodnight, Maybelle

2011-08-06T22:18:00.007-05:00

We're taking a short break from our outstanding series of posts comprising a conversation about "A Father's Search for a Drug for Down Syndrome" so that I can share with you something cool Biffle and I have done. If I were being only slightly hyperbolic, I'd say that this is the second-coolest thing we've created together (the first is mentioned repeatedly in the song).

Aaron Sez: Part five of a conversation about "A Father's Search for a Drug for Down Syndrome"

2011-08-05T09:57:00.000-05:00

We're continuing our multi-part conversation about our responses to the recent NY Times piece called "A Father's Search for a Drug for Down Syndrome." Today's guest post is different in a couple of ways. All previous guest-posters have been parents of kids with Down syndrome. Today's guest poster is an uncle of a kid with Down syndrome. It's my brother Aaron!

So one of the ways this post is different is the uncle-angle. Another way it's different is that Aaron is a Ph.D. student in the Department of Kinesiology at UNC-Greensboro. His area of interest is exercise psychology, and that's where this post is coming from. As you may remember, in a comment on the first post in this series, Aaron said he was going to go read Costa's research. Well, he did that, and now he's offering a totally different set of questions and considerations than previous guest posters.

Also, he is a Ph.D. student who is perfectly comfortable using "doo doo" as a category of analysis.

So I read/skimmed a few of the studies that Costa and his colleagues did. My main observation is that these are scientists interested in how drugs can be used to increase the cognitive performance of those with DS. Drugs are their thing. So, they're looking at their questions through this lens.

In the same regard I'm looking at all of my questions through the lens of exercise. This is what I have to say after reading the literature (To be fair, I only read the 3 articles specifically mentioned in the NYT - these guys have published loads of stuff).

MEDICINE has been found to increase the number of brain cells in the dentate gyrus of the hippocampus (Prozac), as well as increase cognitive performance (Memantine) in rats.

EXERCISE has been found to do the same thing. What's interesting is that Costa actually cites one of the foundational pieces of literature that shows how exercise increases neurogenesis (new brain cell growth), but he doesn't mention how his results match up (better, worse, same). I pulled up both articles to compare their findings and the metrics were off. Just lead me to a bunch of questions regarding the experimental design of the study that I don't think you'd be very interested in.

Additionally, Costa's justification for testing the effectiveness of Memantine comes from an exploration into a potential mechanism of the early onset Alzheimer's-like symptoms that a lot of people with DS get. It's been seen that exercise helps with symptoms of Alzheimer's - especially in those with certain genetic predispositions for early onset.

The NYT article goes on to mention other studies that have shown that learning is enhanced by increasing norepinephrine and decreasing beta amyloid deposits. Exercise does this too.

Here's what we need to know: Which helps more; exercise or meds? Is there an interaction? Meaning, is it even better to do both? Past studies have shown that some antidepressants increase the expression of BDNF (like miracle grow for brain cells) in the dentate gyrus. However, exercise been found to do the same thing. And, when combined with drugs, it does even better.

Obviously, I look to exercise for answers. However, there are several reasons why it's important that we know if exercise is a viable option for increasing cognitive performance, quality of life, and physical health (regardless of your net chromosome count). Exercise is free for everyone! It helps with our entire self (mind and body). And the side effects include: looking awesome, feeling great, having better doo doo's, sleeping better, increased insulin sensitivity (bye bye diabetes), etc...

So, we don't know how well this magic pill stacks up against the exercise studies that are out there. And, actually, I haven't seen any studies that have looked at these exercise questions with mice or people with DS. However, based on what is out there, I see a lot of parallels. And, I'm 100% sure that most parents of kids with DS would agree that making sure that their kids get enough physical activity is a good thing. No guilty Matrix-like dilemmas (should I take the blue pill?)- just moving your body.

I'm all for increasing cognitive performance. But, when dealing with meds, there are a lot of questions that need to be answered first (especially with kids!). The little I've read about the experiences kids with ADHD have while trying to adjust to their meds has been heart breaking. Sometimes meds can really help someone out, but sometimes they can cause more problems than they solve (medical, social, etc).

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Brad Sez: Part four of a conversation about "A Father's Search for a Drug for Down Syndrome"

2011-08-03T19:14:00.002-05:00

We're continuing our multi-part conversation about our responses to the recent NY Times piece called "A Father's Search for a Drug for Down Syndrome." All the guest-posters are parents of kids with Down syndrome.

Today's guest author is Brad, a father and activist who does a great deal of letter-writing, and also writes a fair number of comments on mainstream media posts about Down syndrome. You'll remember that I posted about some of his activism over at Girl w/Pen. In a recent email to me, Brad shared, "Never thought I would want to / have to change the world.....but now I can't imagine allowing the world complacency. Change is a lot of work, yet easier than I ever imagined ...strange?!"

When I first learned about +15 (DSRTF) and then again when I read about changing minds I was initially repelled. I want people to accept my child for who she is, not change her to fit our rigid and normative culture.

But then I thought about it, and if there were a treatment I could take that would make my life easier and my ability to participate more freely, I would want to try it (assuming no major side effects). Nothing could stop you from stopping treatment and reverting (it's not surgery). I don't think a more intelligent Brianna has to mean her personality is 180 degrees different. I am sure it won't be 100% the same, as mine changed when I went to college, when I was exposed to different people, when Bri was born....why should I expect hers to be rigidly the same? But I am sure she would be a more happy individual if she were able to contribute more to society, were able to have greater independence and do the things us adults love to do (buy homes, drive cars, have our choice of employment, even potentially have a family of her own....who knows?!)

This article framed up a race I see in my head....first will come a push for extermination through testing, but that will be followed by many children with DS being born to parents who refuse to abort. Those children could soon have 90 or 110 IQ's. Then society will be forced to deal with the real issue...they are afraid of people with DS because they look different. The heart issue is solvable, the IQ and independence questions are non-issues. So you are left with few issues to cloak the real concern. And I think that is when some real breakthroughs will come for DS and other disabilities as a result!

What do you think?

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Krlr Sez: Part three of a conversation about "A Father's Search for a Drug for Down Syndrome"

2011-08-02T12:18:00.004-05:00

This is the sign for "What the Hell, Mom?"

We're continuing our multi-part conversation about our responses to the recent NY Times piece called "A Father's Search for a Drug for Down Syndrome." All the guest-posters are parents of kids with Down syndrome.

Today's guest author is krlr, the blogger over at Trial Run who consistently writes thoughtful, emotional, and funny pieces about life in her world. Although it's perhaps not fair to do so, I've borrowed a picture of her daughter from her blog so that we can all appreciate how adorable she is. We haven't had enough visual imagery as part of this conversation, so there you go. I didn't write the caption, because I'm not as funny as krlr.

When I first read Dan Hurley’s article I was dismayed by his unsympathetic description of Dr Costa’s daughter and by his sloppy language. I reread it because it’s about a controversial issue near & dear to my heart and I would have been happy to ignore the former if only to explore the latter. I was still left unsatisfied. He skims the vast ocean of disability, medical testing / experimentation, research priorities and returns to port, never having felt a drop of water. So Sunday morning I wrote over three pages pointing out everything which should have been expanded on and explained …and then I came full circle, conceding he simply couldn’t have charted that ocean in one article in a weekend magazine. I even gave him a little credit for trying to provide context.

And since I criticized Dan Hurley for being unable to navigate this world in one essay I won’t try to in a (hopefully) shorter blog post. Except I can think of few other issues more complicated and emotionally fraught, so bear with me. This is, unbelievably, the short version.

It is a well known fact, not mentioned in the article, that over 90% of fetuses known to have Down syndrome are aborted. However most of the babies with DS are not born to the mysterious 10% who know in advance their baby has an extra chromosome. They are born to moms who refused all testing, knowing they’d never terminate, no matter what, and they are born to moms who were given “indicators” but who decided, for one reason or another, to run the numbers and hope. The non-invasive blood test removes the risks of miscarriage which deterred some of those moms from seeking certainty, and it’s done early enough so that moms haven’t yet felt their little bundles of joy kicking around inside of them. Although some would argue with me, termination is simply safer & easier to consider in the first few months.

One of the test’s developers is quoted in the article as saying it would not be “an obvious step that you would terminate an affected pregnancy,” but over 90% already do. And a good number of them do following a mid-pregnancy amnio (i.e. post palpable baby movement), and do so despite various advocacy groups’ efforts, and do so despite Glee’s inclusive cast, and even despite knowing that those with Down syndrome “do far better than once thought possible” (unfortunate phrasing aside). It is impossible to believe the live birth rate for babies with Down syndrome won’t plummet once the new test is available.

Later in the article, the author discussed parents’ ambivalence about a “cure,” the “surprising” 27% of Canadians who said no, and the other 32% who were unsure. It appears counter-intuitive to the numbers above – what diagnosis is so tragic as to warrant a 9/10 termination rate but for which over half of the parents in question would refuse a “fix”? Simple enough – parents can’t imagine loving their kids any more even if “fixed.” Nor do we want replacement kids. He quoted Michael Bérubé, who was leery of “messing with the attributes [his son] has.” The author then wrote parents fear “increasing their children's intelligence might change their personalities – their very identities.”

We fight so hard for our children to be accepted as individuals and afforded equal rights, funding, and basic human dignity – that our reflexive position is defensive. Our children are worthy of respect, just the way they are, dammit. But there is always a risk in the special needs community of infantilizing the disabled. Kids with Down syndrome, particularly, are stereotyped as being “always so sweet and loving.” My daughter is full of joy, curiosity, and has more personality than 90% of the people I know. She IS sweet and loving. But her brother is too and he only has 46 chromosomes. Neither kid needs “fixing.” But I do not think my daughter’s sweet spunkiness is a direct result of having a 47th choromosome or of her cognitive limitations. To presume she’s sweet because she’s short a few IQ points is akin to calling her a “pillow angel.”

Doctors are now doing surgery on fetuses with spina bifida so as to eliminate much of what caused those babies’ cognitive disabilities. Several years ago parents of those kids faced eerily similar situations to the parents of kids with DS: a prenatal diagnoses and the decision to terminate or face years of medical struggles, IEPs, and the very real possibility their kid might not be able to live independently. Now spina bifida requires a one hour long surgery to fix. And it’s no longer even experimental, so insurance covers it. It would be interesting to know how much and how fast the termination rate has dropped.

No simple surgery can pry the 47th chromosome out every cell in my child’s body but what about a pill, once a day, that would eliminate her need for IEPs, that would make doing algebra a normal sit-down-and-do-your-homework-young-lady! issue, and not a miracle worthy of report in no less than the NY Times? Or maybe a pill that would “fix” her speech delays so that I can hear her call me Mom? I don’t think her learning to verbalize will lessen the ferocity of her hugs… and easy solutions are tempting.

What’s more, I suspect -or fantasize- that if we reach that point parents receiving a pre-natal diagnosis of Down syndrome will hear, “Yes, it’s unfortunate but it’s managable with this blue pill and a little extra effort,” much as they now tell parents of kids with diabetes that it’s manageable with insulin and little extra care. [Yes, this is a gross over-simplification. But what if it eventually ISN’T?]. Denmark now has the explicit state goal of eliminating Down syndrome – since DS occurs at conception and cannot be prevented with spinach salads or extra Vitamin C, this requires termination. State mandated eugenics, alive and well in Western Europe. Would this policy survive if DS becomes simply a physical condition, requiring maybe a heart repair and extra PT, and not a cognitive issue? No one is advocating eugenics for kids with diabetes. If it becomes a "manageable condition," then maybe my daughter won’t be the “last of a generation”. Also tempting.

Do I think it would end terminations by parents distraught by the diagnoses? No. Parents terminate otherwise planned for babies because they are having girls, or having kids with cleft palates or club feet. Those incapable of handling cleft palate repair, probably wouldn’t want to deal with a baby with “heavy lidded” eyes. [That they might feel differently if our nation’s leading newspaper called them almond or Asian-shaped eyes instead is a different issue].

However - and this is where it gets sticky - would I want them to test their elixir on my child? No. Absolutely not. I’m not going to risk her liver or kidneys or already repaired heart so that she can help them figure out which warning labels to slap on the bottle. She IS fine the way she is. She will lead a happy productive life, with or without algebra. Ten years from now, following widespread use by other people’s kids, I might have a different answer, & will be grateful to those other parents for being braver than I, but while I regret the need for IEPs, I don’t think my daughter needs fixing. Nor do I feel compelled to (possibly) sacrifice her health so that others might be less tempted to end a pregnancy.

But am I doing enough for her if I don’t reach for every conceivable advantage? Some parents are already supplementing with fish oil and ginko biloba – they seem relatively safe. No harm, right? Where is the line between accepting and loving our kids for who they are, doing our job as parents and maximizing their potential, and risking their hearts with the intellectual equivalent of fen-phen? What if the potential options for how she lives her “happy and productive life” are trebled if her noisy NMDA receptors are quieted? As Mr. Bérubé states, “If you’re talking about a medication that allows people to function in society and hold jobs, how can you be against that?” Again, tempting.

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Cindi Sez: Part two of a conversation about "A Father's Search for a Drug for Down Syndrome"

2011-08-01T13:38:00.007-05:00

As you'll recall from yesterday's post, we've begun a multi-part conversation about our responses to the recent NY Times piece, called "A Father's Search for a Drug for Down Syndrome." I asked some people whose thoughts I'm interested in to write guest posts, and they've generously agreed to do so. All the guest-posters are parents of kids with Down syndrome.

Today's guest author is Cindi May, a faculty member at the College of Charleston who is one of the individuals most responsible for our REACH Program--a truly inclusive, academically challenging college program for people with cognitive disabilities.

Lots of thoughts about this.

First, the picture at the start is grim, and unnecessarily so. As is (I think) the general depiction of individuals with Down syndrome. If Costa has only met two who can do algebra, he needs to take a trip to Bishop England*! There was some positive promise in the article about the outcomes for people with Down syndrome, but not enough emphasis on the impact that education and opportunity can have (in my opinion).

That said, I thought there were two points that struck me:

(1) What are the implications of meds that might improve IQ (or general cognitive functioning) for people with Down syndrome?

(2) How is that different from advanced prenatal diagnosis and termination of a fetus with Down syndrome?

In my mind, medications that improve the function or quality of life of an individual (WITHOUT changing personality or having terrible side effects) are generally a good thing (though perhaps rare). I would agree with Costa that independence is generally positively associated with happiness, and so if the meds can support independence and reduce some of the hardships, then that is probably a positive. I liked the fact that the meds are designed to increase function (rather than control behavior, or "minimize disruption," as some meds are designed to do), but I have a fear that the meds might alter more than hippocampal functioning. No one would want a medicine that changed the essence of a person.

There is the sense that the use of meds might contribute to our societal expectation that people be "normal" in a very narrow sense, and in most ways I think we are better as a society when "normal" is redefined in a much broader sense that includes diversity at all levels, including intellectual functioning. If black people could take a pill to make their skin white (and thus free them from prejudice), does that make life better? Or should we instead concentrate on ridding the world of prejudice? On the other hand, we do correct for so many other differences (e.g., poor eyesight, poor hearing, diabetes, club feet, cleft palate, speech impediments, heart abnormalities, etc.), and in many ways these corrections do seem to make life better. It is not so much of a stretch for me to think of brain function as just one other item on that list.

Last but not least, the one angle I liked about the article is that Costa is arguing (though not explicitly) that people with Down syndrome should not be discarded from the start simply because they have Down syndrome - a practice he clearly believes will be the case with new prenatal testing. I have to agree with him that I don't think parents will be given objective or accurate information as they make decisions about termination, and thus I think many will decide out of fear and/or ignorance to abort if they receive a diagnosis of Down syndrome. I wish Costa had more clearly articulated the position that people with Down syndrome have value and should be supported and celebrated rather than instantly dismissed.

If prenatal testing could determine fetuses with vision difficulties, parents would not likely instantly terminate; rather they would recognize the many other wonderful attributes in their child and push for ways to help overcome visual impairments. Sadly, the same is not true for Down syndrome. It seems to be fully defining in the eyes of the public. Perhaps Costa's work could help people see that it impacts some things but not everything.

On the same day that the NYT article came out, the National Down Syndrome Society sent out this email, which Cindi asked me to share:

Today, Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Chris Van Hollen (D-MD) and Pete Sessions (R-TX),introduced the Trisomy 21 Act of 2011 or “21 Acts” package (HR 2695 and HR 2696). The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695).

The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.

The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million to support the Centers of Excellence. For more information, visit the NDSS site here.

*Bishop England is a school in Charleston which has a fully inclusive academic program. Why, you might ask, did Bishop England decide to become academically fully inclusive? Because of the activism of Cindi May.

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A conversation about "A Father's Search for a Drug for Down Syndrome": part one

2011-07-31T13:13:00.003-05:00

On Friday, the New York Times Magazine published an article called "A Father's Search for a Drug for Down Syndrome." The article got to me in different ways than the slate of recent media pieces about the new prenatal testing process. Reading those pieces, I feel a combination of activist energy and nausea. For this one, my response wasn't so clear cut (trust me, in my head a combination of activist energy and nausea is pretty clear cut).

As you know, I’m big on examining representations--this is in large part what my graduate training was about--so the article immediately set of alarms for me in the ways in which it represented not only kids with Down syndrome more broadly, but Tyche Costa herself. For instance, the picture accompanying the article is pretty grim. If you were going to offer a picture of me and Maybelle, you could print one in which we’re both staring somberly at the camera, or you could feature one of the 1000 in which we look like we love each other and are having a great time together. Or, you know, a picture like this one on the left from Richard Bailey or Shifting Perspectives.

Another example of problematic representations: our first descriptive introduction to Tyche Costa has her standing at the wrong car, waiting to be let in. Confusing! Why is she there? What's wrong with her? The author Dan Hurley then immediately supplements this introduction with a description of how she looks. She’s not described as eager, friendly, curious, or any of the million adjectives I might use to describe a child I just met. No, she has “a round face, broad nose and heavy-lidded eyes.” When she speaks, she has “a slurred, high-pitched voice.” If someone described Maybelle this way in the NY Times, I’d want to kick them in the nads.

But that’s not the main idea behind this article, so let me move beyond that critique and into the larger question the article raises: what would it mean to have a drug that improves the brainpower, the cognitive functioning, of people with Down syndrome?

This is a tricky question for me. What I first thought when I read the article was that it was promoting a cure for Down syndrome, and a door slammed shut in my mind. Cure? Absolutely not. Maybelle is fantastic the way she is. She doesn’t need to be “cured.” It's a shame that society can't broaden its horizons to recognize that her differences contribute to the world we live in. She doesn’t need to be made the same as everybody else—whatever that means, because we’re not the same.

Then I asked some thoughtful friends—all parents of kids with Down syndrome, some academics, some bloggers, some general activists—what they thought of the article. They offered such interesting responses that they opened up doors in my mind for me. I’ve asked them if they’d be comfortable with me sharing their responses, and they generously said yes.

So we’re going to have a multi-part conversation here about "A Father's Search for a Drug for Down Syndrome." Some of the contributors include Cindi May, my colleague and friend who's largely responsible for CofC having one of the best college programs in the nation for people with cognitive disabilities; the often-cited activist Brad; and fabulous blogger krlr--someone I'm committed to meeting in person sometime soon. Biffle might even have something to add! At the end, I’ll probably weigh in with my thoughts, with a particular emphasis on the ways in which my friends' comments have helped me to question my questions.

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Things going on here: Lose the Training Wheels

2011-07-28T18:40:00.001-05:00

This week I'm volunteering once again for Lose the Training Wheels. It's such a great program! Riding a bike is a crucial part of being a kid in the world, and for many of us, it's a crucial part of being a mobile adult (I get to my job every single day by riding my bike--I do love living in downtown Charleston). As you'll know if you read the link above, a very small percentage of kids with Down syndrome and autism learn to ride bikes--but they can learn to ride bikes if they're given appropriate support and opportunities to practice.

I'm working this week with a woman named Michelle. She is terrified of riding a bike. So terrified that as she gets on her two-wheeled bike and rides around the warehouse or, this morning, the huge empty parking lot outside, she often repeats, "I'm so scared! I'm so scared!" Meanwhile, she rides her bike. This, as I keep reminding her, is the definition of courage: being scared and then doing the thing anyway. She is a rock star, and I keep reminding her of that, as well, as I race around beside her, trying not to collapse from exhaustion while she zooms on her bike.

I have two quick stories from LTTW. One is the story of wounds. Yesterday, shortly after she got up on her two-wheeled bike, Michelle wrecked, and I fell on top of her. (This was a moment of feeling like the world's worst LTTW volunteer.) She skinned her knee a bit, and scraped her knuckles. Fortunately, right before this incident, one of the LTTW staff had told me that a core principle of LTTW is that falls happen, and you just get back on the bike immediately.

Another fortunate thing is that I live with someone for whom a core principle is that wounds are cool. You get scraped up, and then you get to show off the scabs and scars as badges of honor. So I quickly shared that information with Michelle. As we walked over to get a drink of water, I said, "Do you want me to call Biffle? He'll tell you how cool it is to scrape up your knee." She did indeed want to hear what Biffle had to say about wounds. So the two of them had a lengthy cell phone conversation. At one point Michelle said, "No, there's no blood," and I knew for a fact that on the other end of the phone, Biffle was saying, "Oh, well that's too bad. It's cooler if there's blood. But it's still pretty cool that you got scraped up." (And I was right.)

The second story is that when we were standing in a group today another volunteer said to Michelle, "Come on, girlfriend." Michelle looked at her, scandalized, and said, "You're not my girlfriend. Girls marrying girls is gross." I paused for a second, sort of gauging whether anybody else was going to say something. When nobody did, I said, "You know, Michelle, sometimes girls marry girls, and sometimes boys marry boys, and sometimes girls marry boys. You get to marry whoever you want. It's not gross." One of the event coordinators was walking by, and she said, affirmatively, "We're in a whole new world." Right on.

Updates on the ADA anniversary piece

2011-07-27T14:00:00.001-05:00

Oooo, look, my discussion briefing has gotten picked up twice so far:

Birth to Thrive Online
Deseret News

I'll add to this list as more stuff comes in--more for my own record-keeping than because I really think you all need to read all of this.

Americans with Disabilities Act anniversary

2011-07-26T12:16:00.001-05:00

Because I suspect many of you aren't reading press releases at mainstream media outlets, here's a press release that went out today. Commentary for Baxter Sez readers below.

The Americans with Disabilities Act: A Civil Rights Landmark for People with Disabilities, Including Down Syndrome

A Council on Contemporary Families Discussion Briefing in Honor of the 21st Anniversary of the ADA
July 26, 2011

Prepared for the Council on Contemporary Families by Alison Piepmeier, Director, Women’s and Gender Studies at the College of Charleston, and Amber Cantrell, Women’s and Gender Studies undergraduate at the College of Charleston

The Americans with Disabilities Act, passed July 26, 1990, is one of the most significant pieces of civil rights legislation in American history. What the Civil Rights Act of 1964 did for people of color, the Americans with Disabilities Act did for people with disabilities -- a population of between 36 and 54 million Americans, representing 12 to 19 percent of the U.S. population.

New Rights, New Opportunities, and Continued Challenges After ADA

Before the ADA, people with disabilities had no guaranteed access to public spaces, from courthouses and voting booths to retail stores and schools. There was no requirement that public transportation or gas stations be accessible. Now such accessibility is legally mandated. The ADA also prohibits discrimination in employment, health care, and education. Individuals with physical handicaps have entirely new possibilities to pursue educational and work training and to participate in civic life.

As more students with various developmental delays and disabilities are given the opportunity to go to school with their peers and be taught according to their own Individualized Education Plan (IEP – a free resource for school-aged children entering the public school system), old limitations are also slowly being replaced by new expectations for children with intellectual disabilities. In the U.S. there are currently at least 69 four-year college programs designed to include people with intellectual disabilities, not to mention many additional options for postsecondary education.

But misunderstandings about people with disabilities persist, and the question of how to integrate all people with various disabilities—physical, cognitive, and developmental— into American life has not been fully resolved. For example almost twice as many disabled Americans aged 16 and older (21 percent) live below the poverty level as people without disabilities (11 percent).

Pre-natal Testing Offers Hope and Concern

Even as the ADA has affirmed disability as one aspect of human diversity that should be respected and protected, technological advancements in prenatal testing have raised the possibility of fewer people with disabilities being born. While many people welcome the chance for parents to screen for severe disabilities, others worry that we may be raising the bar for what is considered an “acceptable” child.

Recent reports from two drug companies indicate that by spring 2012, a prenatal test will be available in the U.S. market which will diagnose fetal genetics through a maternal blood sample. This test will cause no risk of miscarriage and can be performed early in a pregnancy. The test is being marketed specifically for diagnosing Down syndrome. The implication is that parents can find out early and easily if their fetus has Down syndrome so that they can terminate the pregnancy, as do 90 percent of families who currently find out through diagnostic testing that their fetus has Down syndrome. Disability rights advocates and many parents of children with Down syndrome worry that such decisions will be based on false stereotypes about the difficulties of raising a Down syndrome child.

For example, although rumors abound about the difficulty of parenting a child with a disability, recent research paints a more optimistic picture. When a study compared the rate of divorce between three groups -- parents with non-disabled children, parents with children who have disabilities not including Down syndrome, and parents with children with Down syndrome -- the rates of divorce were 10.8 percent, 11.2 percent, and 7.6 percent, respectively. Parents who had children with disabilities were only slightly less likely to get divorced, and parents who had children with Down syndrome were actually LESS likely to get divorced. Several studies, including long-term projects involving qualitative interviews with families that include children with disabilities, have failed to find significant differences in reported happiness or trauma for parents of children with disabilities or without.

Less than 30 years ago children born with intellectual disabilities were not expected to walk, talk, or feed themselves. Thanks in part to landmark legislation like the Americans with Disabilities Act, children today born with intellectual or physical disabilities are quickly achieving more than previous generations thought possible. We may have a ways to go, but today our society is much more accepting of difference and more supportive of accommodating a population that for centuries was devalued and maltreated than it was before the ADA was passed.

For more information, please contact Alison Piepmeier, Director, Women’s and Gender Studies at the College of Charleston, 843-953-2280; piepmeiera@cofc.edu.

See also the ADA National Network (http://adata.org/Static/Home.aspx).

About CCF: The Council on Contemporary Families is a non-profit, non-partisan organization of family researchers, mental health and social practitioners, and clinicians dedicated to providing the press and public with the latest research and best practice findings about American families. Founded in 1996 and based at the University of Illinois at Chicago, the Council's mission is to enhance the national understanding of how and why contemporary families are changing, what needs and challenges they face, and how these needs can best be met. For more information, or to receive future fact sheets and briefing papers from the Council, contact Stephanie Coontz, Director of Research and Public Education of CCF and Professor of History and Family Studies at The Evergreen State College. coontzs@msn.com; 360 352-8117.

Commentary for Baxter Sez readers:
This was an interesting experiment! The "discussion briefing" is a new genre for me, so Amber and I weren't sure exactly how to do it, and Stephanie Coontz (you know, Stephanie Coontz--as in THE Stephanie Coontz) was incredibly helpful with suggestions, edits, and reorganization ideas.

After the release had already been released, Biffle offered some good feedback. For instance, he noted that the ADA has worked about as well as the Civil Rights Act: it demonstrated our society's intentions not to be a bunch of discriminatory jerkwads, but it didn't actually undo all the discriminatory jerkwadishness. Some of it, yes, but our societal racism, sexism, and discrimination against people with disabilities are entrenched.

And one very tiny point: I am so fully committed to people first language that it bummed me out to see the phrase "a Down syndrome child," which I'd changed to "a child with Down syndrome." It makes the back of my neck itchy when people refer to individuals with Down syndrome as "Downs kids" or whatever, so I'm sorry to see it end up in my discussion briefing. But it's only a small bummer. On the whole I'm excited to see what happens!

Girls Rock Charleston

2011-07-22T05:03:00.000-05:00

Today's the final day of Girls Rock Charleston, a fabulous week-long camp created by some fabulous Charleston feminists who decided they were going to change the world, and did it.

Here's their description of the experience: "Girls Rock Charleston is a music arts camp serving girls from diverse backgrounds in Charleston county. The camp will use music as a platform to promote creative expression, self-confidence, acceptance, and community among young women and girls. Campers will have the opportunity to learn how to play musical instruments, write songs, perform, and promote music through various media in a positive, encouraging environment."

And here's a tumblr so that you can see what the week's been like: http://girlsrockcharleston.tumblr.com/

They have a showcase in downtown Charleston on Saturday afternoon--if you live around here, come out and see these girls perform!

Is it fair for me to say that I'm extra proud of them because several of the women who made this happen are former students, and even WGS alums?

GQ and Brad's success story over at Girl w/Pen

2011-07-20T13:25:00.000-05:00

The title of this post pretty much says it all. Head over to Girl w/Pen to read an activist success story.

Medical care and children

2011-07-18T09:08:00.001-05:00

We've had two Monday mornings in a row that have involved medical care for Maybelle. Because she has Down syndrome, it's a good idea for us to have various parts of her checked on a regular basis, so last Monday we did an audiology visit, and this morning we had her eyes checked.

Here's what I'd like to say: MUSC is a solid, reputable medical facility. They do a great deal of excellent work, I'm sure. But some of their pediatric clinicians aren't exactly what you'd hope for, in terms of their interactions with patients and parents. Let's just say that as we biked home from today's visit, we taught Maybelle to say the word "asshole." She did a good job with it.

Some quick tips for clinicians:

You're dealing with a child who's almost three. Let's expect that she's going to be wiggly and not want you messing with her ears or eyes. If you make us wait a long time, she's going to start unfastening her shoes, or trying to slide down and play Ring Around a Rosie. This is not a surprise, something that you get to be visibly irritated by, or something that allows you to characterize her as "difficult." Her behavior made perfect sense to both parents, since we, too, were feeling bored and fidgety.
If you identify a child as "difficult" to her obviously doting mother, you should expect the mother's smiling face to suddenly stiffen. Your resident was visibly uncomfortable. Thank you, resident, for looking shocked and stating immediately, "Most three year olds could be characterized as 'difficult.'"
Talk to the parents. Explain to us what you're doing and why. If you can manage to do so with even a vaguely cheerful affect, that would be a plus.

We'll be finding new places to get Maybelle's hearing and sight assessed, and I'm going to let her pediatrician (who is awesome) know.

Food and perfectionism

2011-07-14T13:12:00.001-05:00

College of Charleston is great for providing food to folks who are in big life circumstances--surgeries, recoveries, and of course births. One of my colleagues recently had a baby, and I signed up to bring her tonight's dinner. I ran home today between meetings to make a meal: tomato zucchini pie and chocolate chip cookies.

The pie is my friend Leanne's recipe. She fed it to me one day, and as I was saying how delicious it was, she said, "It's really easy to make!" I nodded politely, thinking, "Yeah, right," but then she said, "Get one of those pre-made pie crusts. Spread a package of Boursin cheese in the bottom. Then slice tomatoes and zucchini on top, and bake it at 350 until the crust is browned." Well, now, that is an easy recipe! And I've made it two or three times for us this summer, and it's delicious.

So I made that for my colleague and her partner and new baby, and whipped up some chocolate chip cookies to go along with it. As I assembled, Biffle watched. "Are you sure you're doing it right?" he asked. "What if they eat it and say, 'Wow, everybody's food was good except Alison's'?"

First of all, let me note that I was doing it right. But as I pondered his question, I sort of shrugged. I don't think I'd care if my food wasn't that good. Not that I want to poison the new family, of course, but if they end the meal thinking, "Yowza, AP isn't such a good cook," I wouldn't be devastated.

It may be that I've found one area of my life in which I'm not a perfectionist! That's worth celebrating!

And I did send along the cookies, which are reliably delicious.

This post is probably only interesting if you went to grad school with me.

2011-07-11T15:00:00.000-05:00

Ida B. Wells

That means Eliza, Deandra, and Rory: take a look! (And if anybody else who went to grad school with me has been reading the blog, leave a comment and say hey.)

The first book I wrote--that I researched from scratch and wrote myself--was a revision of my dissertation. It's called Out in Public: Configurations of Women's Bodies in Nineteenth-Century America. It's a fine academic book, a book that did its job, which was to establish me as a Real Life Scholar. I was and am proud of it, and I love the women I wrote about--19th c. American women who did subtle, creative, radical, and/or dramatic things to challenge the oppressive culture they were living in. Let me just say that one of these women, Ida B. Wells, will be making an appearance in the WGS Capstone course I'm teaching in the spring.

But other than the women I wrote about occasionally showing up on a syllabus, this book has felt like a little bit of a vestigial organ. Everything I've done as a scholar since then--everything--has been about contemporary feminist activism, the third wave, zines, parenthood, and now prenatal testing. I sort of thought that Out in Public was an interesting relic from my past.

And then this afternoon, I was biking to campus, pondering this whole prenatal testing thing. Here are the thoughts (triggered, in part, by comments on the previous post):

What differentiates eugenics from reproductive rights? I'm passionately in favor of reproductive rights: I'm very open about having had an abortion, which I don't regret. I believe every woman has the right to determine whether or not she remains pregnant. This is a private issue, an intensely private issue. No one is more qualified to make that decision than the woman who is pregnant.
Eugenics is what happens when reproduction becomes public, when a society starts determining who gets to be fertile and who's sterilized, or--in more extreme form--who gets to live and who's killed. It's public, not private.
But the kicker, of course, is that many of the people who terminate pregnancies based on a diagnosis of Down syndrome do so because of public narratives. Many of the people who made comments on the Freakonomics blog--comments about how much better society would be if fetuses with Down syndrome were terminated--believed that stuff because of public narratives. And they were arguing that this decision was public, because it would affect the productivity of the larger society. The private decision is shaped by public stories and beliefs, as well as by public resources.
So a crucial part of this research project I'm involved in may well hinge on the false binary of the public and the private. And interestingly enough, this was the crucial theoretical thing going on in Out in Public: the 19th c. was ostensibly divided into the public realm (all the guys) and the private realm (all the ladies), which in fact was a false narrative. I based my whole book on showing how false the narrative was, because here were five women who were out in public.
Some quotes from OIP that are resonating with me right now: "The binary categories themselves are inadequate and unstable." (True, I think, of all binary categories.) "Although this discursive and societal model attempted to stabilize and contain shifting power relationships, it was inadequate and its containment only partial." And how about this: "The body's complexity and unevenness is a function of the larger cultural discourses that apply pressures to women's shaping of their corporeality and make certain bodily possibilities more or less available to a given woman at a given time."

Taking it personally

2011-07-09T11:17:00.001-05:00

As you all know, I'm doing research this summer on prenatal testing, and how our mainstream understanding of prenatal testing intersects with and is shaped by our mainstream understanding of Down syndrome.

One of the interesting things that's happening is that in the last month, a lot of press has come out about a new prenatal test that's being developed. It's a test that will be able to examine fetal DNA based on a maternal blood sample, so the test itself (unlike amniocentesis or cvs) won't cause any risk of miscarriage. Plus, it can be done early--by the ninth or tenth week of pregnancy, when abortion is a medically simple process. The drug companies are saying this test will be on the market by spring 2012.

I'll have a lot to say about this, in my research and in op-eds I'm writing. But what I'd like to say here--what's not appropriate for an op-ed or an academic research project--is that I'm taking this research personally. In particular, the comments made in newspaper articles and in online commentary can be quite painful for me to read. For example, recently the Freakonomics blog featured a post called "What Will Be the Consequences of the Latest Prenatal-Testing Technologies?" They note--as does the Wall Street Journal, every single article out there about the drug, and the drug company itself--that this test is specifically effective for diagnosing Down syndrome.

Here are some of the comments that readers have made:

It can only be good if fewer people with “handicaps” are born. Average productivity would increase, fewer accommodations would need to be made, and a great deal of suffering avoided.

A better argument is that a handicapped child will not only suffer from a poor quality of life, but will also lower the quality of life for their parents and any siblings. If little Bobby can’t go to college because their parents had to blow their savings on the special needs of his disabled sibling then the handicap is no longer centered on the single individual with the problem.

On balance it will be a good thing if fewer people are born with defects.

It’s about time. Better living through science.

Anyone who claims that their child’s mental or severe physical handicap somehow brings love or inspiration into the world are simply in denial about the negative impact on everyone involved. Back in the day these sorts of children would simply be allowed to die. Medical science then stepped in to prevent that unfortunate fate, but any parent who make excuses about how the born-disabled are so important and special fails to release that after they themselves die a child that cannot take care of him or herself will be a burden on someone (either family or the state) and will more likely than not to have a poor quality of life. Since Medical Science has allowed for these children to actually grow to adulthood, it would be no less unnatural to allow science to preempt the problem completely.

I have a series of responses as I read these comments. Some of my responses come from my academic scholar/teacher brain: look at the misinformation that's out there! There's work we need to do to address that, and I'm ready to do the work. Some of my responses come from a very visceral, ferocious, protective place: Shut up, you motherfuckers! You are creating a terrible world for my daughter to live in!

The thing that's sort of surprised me, that I didn't immediately recognize I was doing, was this: as I read, I constantly flip over to our Flickr page and look at pictures, like this one:

And this one (which gives me a particularly warm and fuzzy feeling because my brother Aaron says she looks Alison-ey here):

I wonder if it would make a difference if I could post pictures like these in lieu of comments.

PS: I'd like to give a little shout-out here to one of my new blog friends, Brad, who says great things in response to the Freakonomics comments.

The Bobo

2011-07-08T08:35:00.002-05:00

The other day, a blog friend asked for some info about Bobo. Rather than offering coherent info, I thought I'd offer two lists:

WAYS IN WHICH BOBO IS NOT LIKE A DIREWOLF*:

She's large, but not in the ways the direwolves are large. They can take down a horse in battle. She could cause a horse some inconvenience, but that probably sounds like too much effort to her.
If someone broke into our house, I think she might deign to raise her head and look at them. If she were interested enough, she'd stand up and then enthusiastically nuzzle her head into their crotch.
She's really itchy. You rarely read about the direwolves chewing the fur off their tails because of flea allergies. Also, direwolves don't have to have Benadryl.
She's incredibly tolerant. Certain members of our household have decided that a fun game is to play "Gitchee!" with the Bobo, and she doesn't seem to notice. Nor does she seem to notice when the same member of the household sits down on her.

Here's a video that gives evidence of Bobo's non-direwolf qualities (although it does show her as a bit like Chewbacca, which has the potential to be incredibly cool).

WAYS IN WHICH BOBO IS LIKE A DIREWOLF:

If she doesn't know you and you make a move toward Maybelle, she will rip your arm off.**

*If you're not familiar with direwolves, count yourself lucky. They're part of the Game of Thrones book series, about which I'll say: stay away. They're addictive, and I've now moved from the fun "Oooo, I get to read the book!" aspect of the addiction to the sickening, compulsive, "Get me the book! It's not even enjoyable anymore, but I have to finish!" aspect of the addiction.
**This is also a Chewbacca-like quality.

Baxter Sez = super famous

2011-07-07T12:03:00.001-05:00

I think this is the first time Baxter Sez has been quoted in a national publication--a national print publication, I guess I should say, since I know we've been quoted in lots of other people's wonderful blogs.

But check it out!

You'll notice that the post they quoted was the one where I was agonizing about how to respond to what I referred to as my pedagogy failure, but the excerpt highlights my successes, not the particular failure with which I was grappling.

Here's the flipbook version of Skirt!, so you can see the magazine as a whole (this quote is on page 82).

Thanks, Margaret!

Maybelle Carter in a zine

2011-07-06T12:16:00.001-05:00

In just a couple of weeks, the amazing Girls Rock Charleston will be happening down the road from me. The people putting on this event are making a zine for the participants (ages 9 to 16), and they invited me to make a page. Here it is. I'm so proud! I'm not just a zine scholar, but I'm actually someone who can still contribute to a zine.

And I'll bet Maybelle Carter hasn't been in that many zines.

My version of tweeting

2011-07-05T07:57:00.000-05:00

Although my brother was into Twitter so early that his Twitter name is simply his first name (this, apparently, makes him very, very cool), I'm not a Twitterer. I realized, though, that I have my own version of tweeting: I take pictures with my cell phone and send them to our Flickr page. If you're interested in knowing what I'm doing on weekends, or in the early mornings, check out our page and you'll see:

Here we are at the downtown Charleston fountain. I inadvertently put up so many pictures of Maybelle in fountains that I've decided to resist that urge for the rest of the summer.

Maybelle having breakfast at a restaurant, showing off her new sunglasses.

Maybelle having breakfast at another restaurant--this one her favorite of all time. She was very excited to be there.

You'll also see that a number of these pictures are taken on walks, and you can see the trend that's developing that I'm documenting. The last picture is from this morning, and Bobo was a very good sport.

Sign of a person who, in the night, decided to have another growth spurt

2011-06-30T05:40:00.000-05:00

She woke up outraged at 5:40 and immediately ate

a pancake
a container of yogurt
a container of applesauce
a serving of oatmeal
two more pancakes

Every time I asked, "Aren't you all done?", she'd say, "No," and then tell me what she wanted next.

Damn.