A disabled, queer Becky

My students are amazing.

Inspired, in part, by yesterday's blog post, one of the students in my Disability, Power, and Privilege class left me a gift on my desk:

This is Becky, Barbie's friend who's a school photographer and uses a wheelchair.  RGT (the class's fannish nickname for feminist disability studies scholar Rosemarie Garland-Thomson) refers to her as "a disabled, queer Becky" because she bucks the norms of appropriate Barbie-land femininity.  RGT writes,

The disabled Becky, for example, wears comfortable clothes: pants with elastic waists, sensible shoes, and roomy shirts. Becky is also one of the few dolls with flat feet and legs that bend at the knee. The disabled Becky is dressed and poised for agency, action, and creative engagement with the world.

Becky is awesome.  There she is, hanging out on the Women's and Gender Studies front desk with her companion, Darth Tator, whose light saber proclaims "This is what a feminist looks like."  They're also friends with the rubber duck.  I'm not sure how the duck got there, but we're fairly certain she's an LGBT rights advocate.

Later in the day, shortly before class started, Becky had experienced enough of the WGS world that she recognized her passion for disability rights activism.  She also got a great haircut.

I know for a fact that Becky came from eBay, and while I understand that we significantly diminished her resale value, I think she is soooo cool and will be a meaningful addition to the iconography of WGS.

Thanks, Kate!

Life As We Know It

On Monday I'm teaching Life As We Know It for the first time--the whole book to my graduate class, and an excerpt for my undergraduates.  As regular readers know, this is a book I've read probably five times, and each time new things jump out at me.  Part of the experience I'm having this time around is similar to what I discussed with my latest rereading of Too Late to Die Young:  I'm getting to experience the book as a series of unpredictable, exciting conversations I'm about to have.

But this book is a little different for me, because it's a book with which I've had an intimate relationship.  This book marked one of several very important turning points for me early in Maybelle's life.  Ages ago I heard a teacher say that if you could give a person the exact right book for the moment they were in, the book could solve their problems--and Life As We Know It kind of functioned that way for me.  It was one of the narratives that helped yank me out of grief and confusion and into excitement, high expectations, cultural criticism, and appropriate outrage.  (And a belated public thanks here to Rob Spirko, who sent me this blog post that put Michael Bérubé on my radar.)

And speaking of outrage, that was part of what I experienced today reading for class.  In the first chapter of the book, Bérubé discusses, among other things, the recent history of Down syndrome and how much our culture's attitudes have changed in the last forty years.  I know I've talked about this here and in my classes a billion times, but the fact is that this is incredibly recent change.  A paradigm shift.  What I read today that got me was this:

the Kingsleys...were told by an expert in special education that "in my twenty three years of experience I've never yet seen a mongoloid who could read."

This got to me so much that Maybelle, who wasn't feeling well today and was watching the Wiggles, got up from in front of the tv and walked over to me to find out why I was crying.  Maybelle is two and a half years old, and she can read.  Two and a half years old!  It seems like if you're going around proclaiming that in 23 years you've "never seen a mongoloid who could read," you might take a tiny bit of time and give a try to teaching someone to read.  I mean, in a career of 23 years, it seems like two and a half years might not have been that long to try teaching a person with Down syndrome to read.  We tried, and guess what?  Reading!  She's up to 100 words!

Biffle tried to calm me down a bit, reminded me that these weren't hostile horrible people, they were just folks who believed what their historical moment told them was true.  And of course that's right.  But it absolutely breaks my heart to think of the suffering, diminishment, and loss--to individuals and to our human community--that these unexamined stereotypes caused.

The REACH Program brought Norman Kunc to campus to speak this week, and at his evening presentation, he made a point that relates to what's getting me here.  He argued that our culture believes that ability creates opportunity.  We segregate people with disabilities because we believe that once they have abilities, then they'll get to be in mainstream society--then they'll have opportunities.  But that's not how it works.  Maybelle knows how to read because we gave her the opportunity:  it was the opportunity that led to the ability.  And this is true for all of us, disabled and nondisabled alike.

Biffle is interested in finding out if I'm able to teach this book without crying.  We'll find out.

Good things from Charleston

• Bike riding.  The weather here is fully spring-like, and we're doing a lot of biking.  In the last couple of days several different people have said, "Oh, I saw you on your bike!"  One friend said she gets a vicarious sense of peacefulness from seeing me in my present-in-the-moment bike zone.  I think the pleasant weather has made the drivers less pissy, too, so I've been cursed at very little over the last week or so.
• The permeable colleague-friend boundary.  I've told two different job candidates over the last week that one of the great things about the College of Charleston is that there are a lot of folks here you'll want to be friends with.  And in general, faculty here seem eager to make new friends and to connect.  I had some challenging stuff going on yesterday and spent the morning with one friend and the evening with another--both friends who I met because I work with them.  Having my day bookended that way was quite wonderful.
• Maybelle.  I know a lot of you read the blog for Maybelle news, so here's a tidbit from her world:  she is quite the amazing communicator.  These days she's becoming more and more vocal.  With a little bit of coaching, she'll say things like, "I want to go to the store."  All those words, many of them actually understandable.  Food is a big motivator for her, and in the last couple of days she's learned to read the words "peach" and "strawberry" so that we can create more detailed sentences about the yogurt she's eating (sentences such as "I like eating peach yogurt").  One more tidbit:  she's truly a good reader, and I've been telling her so.  She's decided that the phrase "good reader!" is applicable to any number of situations, so this morning, when I was getting her out of bed, I said, "Good morning!" and she said, "Good reader!"

LH Mercy*

This morning, while Maybelle and I were having breakfast, birds were singing outside our window.  I said, "Maybelle, do you hear the birds?"  She loves birds.

She paused her chewing, listened thoughtfully for a moment, and then started making hand gestures.  Very quickly I realized that she was signing "And Your Bird Can Sing," one of her favorite dance songs.  What a clever little person!


*Random blog tangent by way of footnote:  Eliza recently texted me that she saw a license plate that said LH Mercy.  It made her think of me because, in my informal comfort zones, I tend to say "Lord have mercy!" a fair amount.  So now, in my head, I generally think, "LH Mercy!"

Shout-out to community

I've been thinking a lot about community lately, and I'll have a new post up at Girl w/Pen in the next few days talking about this issue in a social justice context.  But for now, here's a shout-out to community in a more down to earth lived way.  Last night, Biffle went to play a gig, and Maybelle went to bed.  After I'd given her some goodnight love, I came to my desk and reached in my backpack to pull out my computer.  Often on evenings when Biffle's going to be gone, I plan to spend a chunk of time doing work that I didn't get around to during the day, and that work, of course, requires my computer.

My computer bag was in my backpack...empty.  I'd left my computer at school!

So here's the sort of community that's available to me:  I texted a former student of mine, Micah (one of the first three CofC alums with a WGS degree!), who lives in my neighborhood.  Micah is the person who, if she's not available to do something, will have a friend whose schedule she knows, and she can hook you up with that person.

I texted, "Hey!  I'm at home alone tonite and just realized I left my computer at the office!  If you have 20 min free at some point, could you come by and let me run to campus and get it?"

Six minutes later, she texted back, "Yes!  at work but I can be there in about 30.  Sound good?"

I replied, "Perfect!  You are awesome."  And she is!  She bikes by my house on her way home from work, so she stopped, hung out with the sleeping Maybelle and the animals who were very happy to see her, and then went on to the rest of her busy evening after I returned.  It's a very cool thing to be part of that sort of community.

She did request that maybe one of these times she be invited to hang out with the awake Maybelle, and that does seem fair!

Anniversary

One year ago today, I was in Duke University Medical Center, having my brain operated on.  I guess this exact time last year I was already in the operating room, reading words off old blue cards, while Biffle and the rest of my family gnawed off parts of their bodies in the waiting room, trying not to be sick with anxiety.

This anniversary hasn't quite snuck up on me--I knew it was coming--but it's far less emotionally charged than the Christmas Eve anniversary of the seizures.  I dreaded Christmas Eve for months and months.  The dread here has been less severe, perhaps because I'm back to work and have lots of things to distract me.  Perhaps because the surgery wasn't as traumatic as the seizures:  the surgery represented the beginning of recovery.

I pretty thoroughly dislike the MRI process I'm still having to go through (the MRIs themselves are fine, but the "what if" component is...let's say challenging), but I have a real affection for the scar running through the part of my hair, and the distinct quarter inch shifting in my skull that is visible on my forehead.  In other words, I'm kind of fond of the aftereffects of the surgery itself.

This Feb. 12 I'm spending with Eliza and Macie, in from out of town.  Maybelle's watching The Wiggles while I make some oatmeal.  Then we're all going to a playground, since today is cold but sunny.  It's a good life-goes-on sort of agenda for the day.

OCD

Today I had conversations with two different people, completely unconnected to one another.  In each conversation I made a joking reference to my own OCD-type characteristics.

"Oh, I can see that," each person (in separate conversations!) said.

Really?

Really?


This seems like maybe the universe is trying to tell me something.

Another reason why I love teaching

We had our first class discussion of Too Late to Die Young Monday. After class, one of my students stuck around to say something to me.

"I wish I'd had this class two years ago," the student said.

"Why?"

"Because I had a lab partner in high school who had a progressive muscular condition and was in a wheelchair. I wasn't really sure what to do. I mean, I was nice! But I didn't know how to be friends. My friends went skateboarding, and I couldn't say to this guy, 'Hey! Come skate with us!' So I didn't really reach out." The student continued to share a sense of uncertainty--what's the right way to help someone be part of a community? Was I too careful? Did I not say or do the right things? What's the way not to make someone feel like an "other"?

"You know," I said, "you're asking all the right questions, and that's really important."

The student gave me a look. "I've always been asking those questions," s/he said. "But now I'm getting the answers."

Two posts, one grouchy and one cheerful. This is the cheerful one.

Today I’ve gotten to enjoy one of the great things about teaching:  getting to experience a book in preparation for class discussion.

I read the book Too Late to Die Young a few years ago, shortly after Harriet McBryde Johnson called me on scheduling WGS events in inaccessible spaces.  I wanted to know who this woman was and what she had to say.  I really enjoyed the book and learned a lot from it.  So when I decided to teach a course on Disability, Power, and Privilege, I thought I’d like to teach the book, and I reread it to confirm. 

“Yes,” I decided, “I’m definitely teaching this book.”  Some of Johnson’s observations are so keen, so clear, and so perfectly articulated that I started bringing quotes from Too Late to Die Young into my own writing.  “This is a really good book.”  I highlighted passages throughout.

Today I’m rereading the book to prepare for next week’s class conversations, and it’s like I’m getting to dive into the book at a deeper level.  I’m not just cruising through for my own enjoyment and education—I’m thinking about it in the context of the students with whom I’ll be talking.  As I read, I think, “Oh, Ashley will find that so interesting!”, or “Becca would have loved Harriet!”, or “I wonder if Amber will have done some background reading on this.”*  The resonant quotes resonate even more this time through.  The book becomes a series of possible discussions, every chapter not only telling a story but offering prompts for conversations I can’t predict but want to be ready for.

This is one of the reasons being a college professor is a great job.

And here's another quote from Johnson that relates to the first part of my grouchy post, below.

Are we "worse off"?  I don't think so.  Not in any meaningful sense.  There are too many variables.  For those of us with congenital conditions, disability shapes all we are.  Those disabled later in life adapt.  We take constraints that no one would choose and build rich and satisfying lives within them.  We enjoy pleasures other people enjoy, and pleasures particularly our own.  We have something the world needs.

Right on.


*I've had these thoughts about almost every student in the class, but I thought it would get boring if I cited everyone's name, so please don't have your feelings hurt if you're a student who reads this blog who's not mentioned here.

Two posts, one grouchy and one cheerful. This is the grouchy one.

Because perhaps I’m not yet cynical enough, it still amazes me that folks in the world can feel comfortable making statements, or proposing laws or writing books, that are obviously hurtful to particular groups.  For instance, a couple of weeks ago Michael Bérubé wrote an online essay about a bioethicist who was analyzing disability and who made a couple of points:  that having a disability makes someone's life “less good,” and that not having a disability will likely make someone's life "more flourishing."  Bérubé has a complex, compelling, and important response.  But one thing that struck me in this scholarly conversation is that we’re still in a field where some scholars can say, “Having a disability makes your life less good,” and other scholars, like Bérubé, have to respond with, “Ummm, what an interesting assumption you’re putting out there!  Let’s talk about why that’s really troubling!”

Another for instance would be the recent No Taxpayer Funding for Abortion Act which explained that the only rape which should qualify a woman for federal funding for an abortion would be a “forcible rape.”  As Kristen Schaal explained on the Jon Stewart show, “There’s rape, and then there’s rape rape.”  Some folks I know were having an email exchange about this, and the question was raised, Why does this matter?  Who cares if the law just allows for abortions in the case of forcible rape?  My friend Robin responded,

When is rape not forced? When it's achieved through intimidation or fear. When the victim is a child. Or potentially any time there is no sign of extrinsic violence.

Susan Estrich, in her study Real Rape, makes a distinction between simple and aggravated rape: aggravated rape involves extrinsic violence, more than one assailant, or the assailant is a stranger. Most rapes are simple rapes: there isn't extrinsic violence, there's only one assailant, and the victim and perpetrator know each other. Simple rapes are not treated seriously by law enforcement or by juries. I suspect they would not be counted as forcible rapes.

This is Robin having to say, "Ummm, what an interesting assumption you all are putting out there!  Let's talk about why that's really troubling!"  (The wording was changed yesterday, but this law still sucks a large monkey penis.)

Next week in my classes we’re discussing Harriet McBryde Johnson’s Too Late to Die Young, and she writes,

Don’t they hear the bigotry?
No, they don’t.  When bigotry is the dominant view, it sounds like self-evident truth.