Friday, April 24, 2015

"People Like That Are the Only People Here: Canonical Babblings in Peed Onk," by Lorrie Moore

Last night and this morning, Elizabeth and I have been having a discussion via blog comments and email.

Here are our comments on Elizabeth's blog's post.  She wrote about things shifting in a good direction, and the fear this can generate (she's a fantastic writer--go read it right now then come back and read the rest of this post):

Alison:  Ah, Elizabeth--you're digging into this. It's scary to dig into hope. I may be uneasy (grouchy?) by the expectations that you're brave, wise, etc. But I know that this framework works for you (isn't it odd how we can find some similarities that emerge from our differences of opinion). 
Anyway, my tired brain gives you a hug. And I'm super glad to hear that you might have the possibility of hope. 
Elizabeth:  
I like the idea of digging into hope. I'm not sure what you mean by the "uneasiness" or grouchy way you feel -- nor what framework you're referring to. Plea service elaborate, wise Teacher!


 
Alison: Rereading my comment, it sounds like I'm saying that I'm uneasy about YOU, and I apologize! I think what I'm saying here is that when people say I'm wise, part of me wants to say, "Akkkk! No, I'm just making my way through this the way any of you would! It's not my wisdom that's brought along a brain tumor to a wise person!" So I generally appreciate the warmth that's conveyed through…what…I'm not even sure. I guess I'm talking about some of the compliments as feeling distancing. If a friend touches my shoulder and makes the "This can really suck, can't it?" facial expression, that can feel really connected.
I am truly throwing this out there without even rereading.


Elizabeth gave a response via email:

Yup. THAT I understand and know exactly. My favorite is the old "I could never do what you do." It makes me feel incredibly isolated. My favorite ever short story is by Lorrie Moore -- "There Are No People Like That Here" in Birds of America. In it, she recounts the story of a woman whose baby is diagnosed with a cancerous tumor. The people who she most relates to, who help sustain her, are those who fully acknowledge the suckery of the situation. Who say "holy shit!" when they see the baby in the hospital crib after surgery, etc.

So she recommended the story (info in the subject line).  And I read it.  It's Friday at noon, and I felt a little guilty because this story shouldn't get in the way of the grading.  Which I wasn't doing anyway (please notice the blog/email conversation that was not the same thing as grading papers).  But I realized that our conversation and my reading do play a role into my research.  And that's not a joke.

So here's the quick response I would have written to Elizabeth.  I figured I might as well share it with you, too.

The story starts with the Baby's bleeding which almost immediately leads to the children's cancer institute, with rooms of families, or divorced fathers.  They're sitting there, being out of control, seeing some of their children being in the process of dying, seeing how vulnerable their bodies were.

The text is written in an explicit third person.  The child (called Baby) gets some description, but Mother, who's central to this story, and Husband (notice that he's not central here--not fully connected to Baby), are presented as voices and feelings, not as descriptions of their bodies or the sounds of their voices.  The doctors all have titles, too, as do all the folks who are living at the children's cancer location.  There they all are.

What does this mean, Elizabeth?  What does it mean to have such separateness?  To me, reading the story, it felt like I kept being pushed out.  I'd want to connect, but I'd be pushed:  this is Mother, not the beautiful/fat/activist/traditional/etc. person.  And her focus is her Baby.  Of course it is.  And as a reader, I'm being given some feedback from the person who's written this book, and who's occasionally asked questions and framed things to me specifically.

I end up feeling like I'm watching different pain and fear in a space where I'm not invited.  I'm looking at them.  Here's one thing:  "She is feeling relief and rage simultaneously:  there is a feeling of prayer and litigation in the air.  Yet essentially, she is grateful.  Isn't she?  She thinks she is.  And still, and still:  look at all the things you have to do to protect a child, a hospital merely an intensification of life's cruel obstacle course."  The simultaneous feelings…I can relate to that with my own health.  Life's a cruel obstacle course for all of us, though.  It's part of what it means to be a person in the world.

And another thing:  "'You've got to have a second child,' says a different friend on the phone, a friend from out of town.  "An heir and a spare.  That's what we did.  We had another child to ensure we wouldn't off ourselves if we lost our first."  She goes on to say that it's a rope she has planned.  This story relates to my world of talk.  I've had conversations about this issue with more than one friend.  A response to life's cruel obstacle course.

It's not a story with an easy ending.  There is an ending--things change at the end--but that doesn't matter to me.  What matters is watching the tools the Mother assembles:

[The Father says] "All of those nice people with their brave stories…Don't you feel consoled, knowing that we're all in the same boat, that we're all in this together?"
But who would want to be in this boat? the Mother thinks.  This boat is a nightmare boat.  Look where it goes:  to a silver-and-white room, where, just before your eyesight and hearing and your ability to touch or be touched disappear entirely, you must watch your child die.
Rope!  Bring on the rope.

Eizabeth, what do you think?

Sunday, April 19, 2015

How much I love "our new home"

(It's not a new home.  That's what Maybelle calls it since that's its name, according to what we called it in September 2013, when we moved in.)

Our house
Good morning, living room.  XOXO.

This is one of my favorite views: I'm sitting at the table (yes, woman, you're at the computer when you could be doing something appropriate with your life right now. I realize it's a ridiculous thing to think, but I do worry about lots of things that I might be doing that's wrong. But I digress.) It's early morning. I'm drinking coffee, and I look up and see this. Often this is an image including Maybelle, but I think she wasn't awake yet when I took this picture.

Our fuzzy couch that can be destroyed time and time again, because we have covering I can wash.  Her Girls all over the floor. Her tricycle that lives inside (it gets lots of outside time).  Her castle at the right.  Her bookshelf to the left, mine to the right (thank you, Claire and Larry).

Notice the details.  The art on the left of the that says "Feminist" (thank you, Eliza!).  Maybelle's steps that she's moved so that she can access the top of the bookshelf, where I've been putting things that need to be taken away from her.  There's an empty laundry basket.  There's an empty cereal bowl from the night before on Maybelle's special table (thank you, Lynne!).

I love our living room because it's beautiful with its colors and loads of framed photos of people I love (thank you, Eliza and Trey).  I love it because it's a mess and that's how I prefer to be (thank you, Mama).  I love it because it feels so welcoming (I've got to invite some people over).  It feels safe, comfortable--it feels like us, Maybelle and me.

Don't you think it's significant that some of my friends and family are super-stars who've helped to create our new home?

Hello, new home.  Maybelle and I are really happy to be here.

Tuesday, April 14, 2015

Show me what democracy looks like.

Activism is challenging.  What does it look like?  What forms can it take?  What kinds of risk am I open to?  Is there hope to move this hope forward, to continue trying to eradicate all forms of oppression that keep us from achieving our full humanity?

Sunday, March 22, 2015

Letter I wrote to a principal last week

Dear [principal],

Thank you again for your time with us on Friday.  I appreciate your willingness to speak with us, and the considerable effort you’ve made to explain your position, to observe Maybelle in an educational setting, and to respond to my concerns.

After we left on Friday, I had some thoughts and realizations that I wished I’d shared with you during our meeting.  I want to tell them to you now.

It troubles me that [this school] didn’t let my daughter start [the school] this fall.  We were and are so excited about this school, but at this point I’m feeling as though Maybelle isn’t seen as fully human.  When [two teachers] and their team visited Maybelle’s school (ECDC), I wrongly assumed that they were using this visit to learn more about who Maybelle is, and how they can best bring her into [the school].  I thought this was a visit saying, “We’re on board!  Now what are the suggestions?”

I was wrong, and that fact became clear when you explained to me that Maybelle wouldn’t be allowed to be a student at [your school].  The same thing happened at our next meeting:  you were kind, but you rejected a role for her at [your school].  In particular, I was struck by the sense that Maybelle wasn’t seen as “normal” enough.  By being rejected from this setting, this school is telling Maybelle that she’s too much work—not valuable enough to be worth the work.  (To be clear, you and your colleagues have been kind throughout these conversations.  I’m not suggesting that any of you are offering any sort of hostility.)

Your refusal to have Maybelle in your class contradicted your (beautiful!) mission:  Maybelle isn’t going to be included in [your school's] “socially diverse student body in a nurturing family environment.”  Teachers in this school are said to offer a number of crucial gifts:  “Teachers challenge the students to discover their own unique gifts through creative inquiry and critical thinking ….  Our small, loving environment enables students to learn self discipline through responsible decision-making and to develop a sense of compassion for others.”  Maybelle and her fellow students could work on these components of the [the school's] Mission Statement—work together, which is best for all the students (as research has said repeatedly). But, instead, she’s left out.  What are Maybelle’s unique gifts?  How would she and her classmates work together to learn self-discipline and a sense of compassion?  I think it’s possible for us to work together to see how best to discover and support Maybelle’s gifts.

I’m not a Christian.  However, in the world around me—Catholic, Jewish, and undetermined—Maybelle has been welcomed and embraced.  She’s gone to non-religious preschool, K4, and K5 in Charleston—all of them welcoming, willing to learn what this will mean for all of them.  She may be welcome to Nativity School, and I believe she would be welcomed to Addlestone, too.  There are also particular public schools that provide inclusive, challenging settings, so that Maybelle and children like her will be in the same classroom virtually all day (I’ll have to work with the staff sometimes to support this work, but I’m happy to do that).

Schools and other organizations are (or have been) eager to work with Maybelle.  These weren’t organizations that had employees with expertise in intellectual disability.  Instead, these are individuals and organizations whose leaders and members are willing and curious.  They didn’t and don’t have to be experts to change what they would do, and most of them hadn’t worked with a child with Down syndrome.  But we’ve all been trying, working together, and we’ve had great successes.  These are organizations committed to their missions.

With respect, I think this is the moment that [your school] should consider what it means to live a mission.  What does it mean when other organizations are ready to embrace my daughter, but your school has sent her away?  This isn’t simply an issue of your organization being too busy, or your classes already having too many children with autism.  You told us about the two children with autism, but you didn’t explain to us why that’s a reason Maybelle can’t come there.  This is a school that seems frightened of working with a child who is exactly like Maybelle.

My concern is that by saying no to Maybelle, you are saying no to many other children with intellectual disabilities, and to their families.  My fear is that you’ll only accept difference if it’s essentially like what you have now.  And I hope that you recognize what a big deal this is, how sad it makes me.  [Your school] was my top choice for Maybelle’s school.  I hadn’t talked to other schools because I was sure [your school] would happily let Maybelle be part of your community.  I was wrong.

Your words and your deeds in your interactions with me, no matter how respectful, strike me as incompatible with what I expected from a 21st century parochial school, or of any thoughtful expression of Christianity.  From my own, non-Catholic point of view, [this school] shouldn’t have to rely on other Catholic schools to compensate for Maybelle’s differences.

Politically, I don’t have much common ground with Philadelphia’s Archbishop Charles J. Chaput.  In 2012, though, he spoke movingly of “the truth that every child with special needs has a value that matters eternally” and said that “the real choice in accepting or rejecting a child with special needs is between love and unlove; between courage and cowardice; between trust and fear.”  Talking about kids with Down syndrome, he said, “each one of these persons is an icon of God’s face and a vessel of his love.  How we treat these persons—whether we revere them and welcome them, or throw them away in distaste—shows what we really believe about human dignity.”

In my own life, Maybelle has been, as the Archbishop explained, “an invitation to learn how to love deeply and without counting the cost.”  I hope in the future—soon!—that [this school] will accept this same invitation.

I very much hope you’ll rethink how you reacted to me, to Maybelle, and to other kids in the world who deserve inclusion, recognition, academic challenges, and love.

--Alison Piepmeier

Sunday, March 15, 2015

Saturday day and Sunday morning, in pictures

Thoughts on Sunday morning, 6:17, after Maybelle and I have had decent nights of sleep.  She's at her iPad, using one of their programs to read through a book.  She can play with every part of the picture for each page of the story.  Pretty cute.  Currently, "Max is asleep."

I'm committed not to feel bad that this is one component of the morning:  I'm on my laptop, and Maybelle's on her iPad.  It's certainly pleasant for me.

Maybelle has demanded a (required, and now comfortable) pigtail as she begins eating:
Before.  Her hair on the right side is getting crusty already.
Allergies suck a monkey penis.

Functional hair.  Strong love with the pom pom.

I read Peanut, written by Ayun Halliday and illustrated by Paul Hoppe.  Graphic novel.  The book was great!  I loved it, and I suspect YA readers would, too (since it's aimed at them).
Great book and morning coffee.  Good times.

If you don't remember my previous book, I got the delightful interview with Ayun, and I feature some of her zine, East Village Inky, in several different places in my book. In fact, Ayun, you might think it's cool that your zine is one of the ones that shows up in the most popular intro to women's and gender studies textbook.

Yesterday Maybelle had a playdate (why do we call it a "playdate"?) at the house of a friend who has great kids up to play with Maybelle. They worked on the plans for their performance, led by a very talented friend.  I wish I had a photo!

Last night I felt that one of my pie-talents might have kicked back into gear.  I made a s'mores pie--I didn't have to make the crust, because it's a graham cracker crust, and why the hell would I want to make a pie that's not substantially than the store-bought graham cracker?

Graham crush, chocolate, and cooked
marshmallows.  This is a s'pores-em you
can get.

I don't like chocolate pies.  I just don't want them.  But I'm not going to eat a pie by myself, and what I like is making the pie, not eating it.  I took a bite, and it's fine, but it doesn't do much for me.  I think Brian and his kids will love it--and in a little while they get it.

My hair is changing.  Have a look:
Good morning, hair!  How much better would you look
if I ever washed it?
Curls!  Shapes!  My hair is beginning to reimagine itself!

That's it.  Heading into the day.  I don't know what to expect, but because I got a solid 8 hours of sleep, and because Maybelle got 11.  Good morning, day!

Thursday, March 12, 2015

Rhetoric

Phil Nel sent along this article after I posted my latest City Paper article:  "Living with Cancer: Coming to Terms," by Susan Gubar.  Gubar is a professor, and for me she marks changes in my own academic process:

  • When I was an undergraduate, her work turned me on in ways that led to the career I have now.  As an English major, I read Madwoman in the Attic and basically though, "OMG they are right!  Literature demonstrates horrific sexism, and here's how 19th c. women writers responded to that!  Activism that was available to them!"  It not only taught me about how authors could respond to sexism, but she helped me to understand feminism and how it manifested in the world.  And how you can identify it in its subtle ways and write about it.  That book affected my life.
  • Then I hit grad school and had the opportunity to 1) read more feminist things, and 2) recognize that feminism was growing and shifting away from things like Madwoman in the Attic.  The damages and dangers in the world weren't limited to middle-class white woman (and I talked to a scholar in grad school who actually did argue this--rejecting what my students and I call intersectionality).  This is an easy and problematic way for me to identify that, but she was someone who did second wave feminism and I did third wave.
Now here she is again, someone whose writing is resonating with me because she's an academic, and she has ovarian cancer.  The article I read was about the rhetoric surrounding cancer.  She wrote things like
So I was delighted to encounter an essay by another friend who encourages linguistic exuberance with respect to this matter of self-definition. In an article composed nine years before her death from metastatic breast cancer, the witty queer theorist Eve Kosofsky Sedgwick recommended acronyms like BBP (Bald Barfing Person) and WAPHMO (Woman About to go Postal at H.M.O.). She then confided that she personally had alternated between PSHIFTY (Person Still Hanging In Fine Thank You) and QIBIFA (Quite Ill, But Inexplicably Fat Anyway) until she settled on “undead.”

None of those terms resonate with me, but I'm glad to read that she and a colleague/friend/person- whose-writing-knocked-my-socks-off-in-graduate-school were exploring how to say what you're experiencing.

And here's Maybelle--often a good way to end a blog post.  She and her Poppi are thrilled for the appropriate Cookeville experience:  they were buying butter twists at Ralph's.

Wednesday, March 11, 2015

PASFH and Warrior

I can't decide if this piece was too painful to have it published.  What does it mean when people tell me loving things, and then I say, "No--it's not what I want"?  And then I write about it in The City Paper.