Day 4 of the Society for Disability Studies conference

This conference has been great.  First of all, there are a lot of impressive people who are impressive for a reason:  they are super-cool and offer up fantastic ideas.  George Estreich was on a panel that was being moderated by Rosemarie Garland-Thomson, and literally every person on the panel was interesting.  Often at academic panels there's one person that you kindly applaud for, but whose presentation is "Eh."  But there wasn't anybody like that at this panel.

I would tell you more, but let's move on to second of all.

Second of all, I'm getting to hang out with some of the people listed/alluded.  George and I have been hanging out, and I think my dream is finally true:  he's my non-romantic boyfriend.  He's as kind and sweet as he is brilliant.  Hello, George.  Welcome to stepping into a more important role in my life.

And, of course, I had two people I love.  They used to be students of mine, but now that they've graduating (a couple of years ago), I can tell them that I love them.  Amber and Beck, I'm delighted to get to see you!  And get to eat with you!  And xoxo!

There are other people who would fit this role, but let's move on to the third of all.

Food!  We've had some tasty food, including one of the chicken and waffle restaurants that has become standard and delicious in the south.  George (ahem, NRB) and I had dinner there one night.  At other places I've gotten satisfying coffee and bagels.  Got delicious breakfast with Amber and Beck. Got an on-the-street hot dog.  Eating--in fancy or low-key ways--is a satisfying part of conferences.

And here comes a satisfying part of conferences.

Three glasses of water lined up on the fancy table.  

In this picture, I wanted to celebrate the water I'd been drinking at a restaurant:  a fancy line-up of water.  I'd been drinking already, as you can tell.

Related, maybe: When one person asked me about my brain tumor, I felt like the table grew silent and our table of people were listening carefully.  I may be making that up, but in general my brain tumor gets people's attention even when I'm not thinking about that.

Okay, the electricity went out at the restaurant, and we ultimately had to leave.  Most of our dinner folks went off for later dinner, but I went back to the hotel.  Here's a celebration in my room:

I guess you can tell without me needing to
explaining everything here, right? My life.

There's more today.  I'm going to get more photos so that you can see more of this conference.  Day 4!

Atlanta, 2015

It's been a long time since I've been in Atlanta.  Probably more importantly, I'm in Atlanta experiencing the Society for Disability Studies this year, an impressive organization and conference.  And even more important than me attending this conference is the fact that the SDS was the last conference I attended in 2014-2015.  Right after last year's conference, my brilliant Duke oncologist discovered I had a brain tumor was growing, and my life kicked into gear in another way in summer 2014.

A series of things happened in summer of 2014.  I worked with colleagues and friends:

• They helped me put together the material for me moving toward my professor in Women's and Gender Studies. (It worked!  Hurray for heart-friends-heart for making me become Professor Alison Piepmeier!)
• They helped me to create a semester of WGS that I couldn't even participate in until the very, very end of the semester.
• They were kind and generous when they interviewed me for various things, from my article about myself in the City Paper to my interviews with the lovely English Department at the College of Charleston.

I feel certain that there are important things to have left on that list.  I know that I've said this before, but it's worth saying again.

And here I am, June 2015, hanging out in a beautiful, quiet, unnecessary hotel room, wondering what this really means, what this really is.  I was gone last week interviewing Emily Perl Kingsley at her own home--invited to stay at her very own home!  But of course that was different.  This hotel room is…calm.  Alone.  Thoughtful.  Able to stay away for virtually everything.

Latte.  Caffeine and deliciousness.  Good morning!

What does this mean?  Last year Rosemarie, one of the women whose scholarship I adore, talked all the way from the hotel to the airport.  We talked about seizures, about how able I am to embrace Down syndrome but am so…torn? shameful?…when it comes to my own seizures.  I was hiding it.  I wasn't talking about it.  Rosemarie suggested we think about the ways in which our own hidden fears can emerge.  

I'm thinking about that as I attend this conference.  I'm thinking that I'm open to the fact that I have a brain tumor, that I recently had very serious surgery, that I'm taking serious chemo, and that I'm in a world of  seizure meds (all working very, very well, so hurray for that).  This year I'm considering writing an article about what it means to be a person that has a world of challenges.  I'm facing it with my daughter (rest assured, she's surrounded by 20 people who are seriously ready to be on call 24 hours a day).  

I arrived here yesterday afternoon.  I had some ideal food in downtown.

He was generous and let me take his picture.

Beautiful hot dog.  I asked him to do it
his way, so he covered it with special slaw
and some sort of Asian ketchup. That thing
was gooooood.

Hello, Society for Disability Studies.  Hello, travel, thinking new ways.  Hello, possible ways of writing multiple things, with the focus on my book (I love it--I want to write it--I love it).

Let's see what happens.

Ralph's got a little award

Best donut ever.  I mean, ever.

Joel, Christy, and I love us some Ralph's time.  I tend to eat until I feel a little sick.

 

Why, you stuck up, half-witted, scruffy-looking Nerf herder.

I'm here to let you know that there are potentially important events happening this winter. I'm also reflecting on the roles Star Wars has played in my life.

"Princess Leia taught me to be tough," my latest piece for the City Paper.

Cooper River 4

Read my latest (political) article, "I Support the Cooper River 4."

Then come back and enjoy Trey's happy dance.

My brain

Trey and I do an especially good at offering out-of-control happiness.

On Monday, my big-time medical team said, "Yep, your brain tumor is staying still.  Right on."

Right on!  That's exactly what I want!  Thank you, chemo.  Keep on, heathy brain cells.   Encourage the brain cells to stop moving, to fall asleep, to dissolve into a million pieces that will get washed away.

Here's Trey's celebration:

He is talented.

Maybelle = recognized and validated as a full human

Beautiful, right?  That was a beautiful photo.  I win!

This is Nativity School.  It's where Maybelle will be going to school this fall.  As a first grader.

I've been there several times to learn about their place and to see if the Nativity folks are interested about Maybelle.

1. The first time I went to see the principal and to meet the woman who would be Maybelle's teacher.  They parked me in the first grade class for twenty minutes or so, so I could get a real sense of what that class is like.  The kids were doing their thing, answering lots of questions together and getting to write answers on the board.  Looked pretty good. Then the teacher and I went into the principal's office--Patti--and talked extensively about Maybelle's characteristics.   No matter what I said, they looked at each other knowingly:  "Oh, I remember that kid who walked on the roof for the first two weeks of class.  Maybelle's gonna be much easier to settle in."
2. The second time was when they wanted Maybelle to meet them, and them to meet Maybelle.  She came to the school for four hours so that she could meet the kids who'd be in her first grade class, do more of the studying in first grade, and doing some kind of game/PE since it was raining.  Apparently Maybelle loved it.  Patti and the teachers talked with the kids ahead of time, letting them know that everybody's different, and Maybelle's not going to talk the way you do, and she'll be in a really different place."  The kids were eager to take part in meeting with and supporting Maybelle--so much so that the teachers had to get the kids from smothering Maybelle (a very good problem to have).  I wish Maybelle could tell me what they did that day--whatever it was, she was pleased.
3. The third time I went there, which was today, I asked Patti whether Maybelle is going to be able to go to Nativity.  Will she be able to come?  Like, really come, not just "let's see"?  She smiled and said, "Yes!" as if she was a bit confused about why I was asking.  

"She's accepted?"

"She's accepted," Patti agreed, smiling.  "I thought I told you the last time."

"You told me it was 99.9 percent," I said.

"Well, she's definitely welcome."

I threw my arms in the air in a "woo hoo!", then covered my cheeks and mouth, like I needed to suck up and collect the overwhelming happiness I was feeling in this moment.

She's accepted.

I know that many of you read the letter I wrote to another Catholic school (and if you haven't, you might as well, because what I'm writing here is a response).  I thought we were in great shape when I visited, and I was happy when four of the teachers and their assistants spent four hours at ECDC.  I thought they were studying the most effective way to incorporate her into the school.  But I was wrong.  This Catholic school said that they can't meet Maybelle's needs.  They can't provide the right support or a successful educational experience.  They seemed to see her as a lot of work--more than they could do in the kindergarten or first grade rooms.

Meanwhile, there's Nativity School--which has less money, very few administrators, and no teaching assistant after kindergarten.  And they don't seem to worry.  They aren't concerned about Maybelle's needs because they feel that people in the world have all kinds of differences, and because we're in a place where we value everybody, having different people is a good thing.  Everything I know about inclusion, they already know.  I mean, really!  Cindi--inclusion goddess--and I went there today, but they were already all over what we'd hoped we could train her to do.  Patti said, "We know that one of the most important thing is for her to become a member of the community."  She said, "We expect all the kids to have big, challenging transitions at the beginning of the year.  It may take longer for Maybelle to do that, and we'll respond to that." She said, "We've had a student who sometimes needed to stretch in the back of the room, and that's fine."

Do you get this?  Do you get it?  Nativity School!  Even though I've got no God going on here, I'm grateful that Maybelle seems to have a perfect school that will allow her to be an inclusive person, to learn valuable skills, but more importantly to become a real person.

Here are Cindi and I after today's visit with Nativity:

We love you, Nativity!  Also, we both look totally cute.