Maybelle's first snow

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

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

Hot tap water

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

I'm drinking a cup of it right now.

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

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

Far from the Tree--I finally finished it

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

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

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

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

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

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

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

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

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

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

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

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

He wrote,

Hmm.

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

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

So I responded,

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

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

And he said,

Ooh.  Ovaries Are Awesome.  Interesting.

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

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

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

Things That Suck a Monkey Penis.

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

I made it to 40

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

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

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

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

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

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

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

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

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


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

My early thoughts on Far from the Tree

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

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

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

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

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

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

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

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

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

Two people not looking mournful.

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

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

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

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