Being interviewed for a documentary

Friday I was interviewed for a documentary.  This was a fun, spur-of-the-moment experience with two twenty-somethings who were told by a colleague of mine that I have some good stories to tell.  I think they initially arrived with thoughts about brain tumor conversations, but they left the topic entirely up to me, so I started off with the Two Shitty Hands story, a story which, to me, has become sort of iconic.  It tells me a lot about our cultural narratives and what we believe to be true.

The documentarians, Jess and Reuben, were game, asking me about Maybelle and cultural beliefs about Down syndrome, about Biffle's and my decision not to have an amniocentesis, about my politics around abortion given the high percentages of fetuses with Down syndrome who are aborted.  They wanted to know about feminism and disability studies, about reactions to my pro-choice politics, and about the brain tumor.  It was an interesting conversation, and they were warmly tolerant of the fact that I can talk for paragraphs at a time when given a topic I'm passionate about and an audience that is quiet and focused on me.

In general I was happy with what I had to say.  One answer in particular pleased me.  Jess asked if I'd heard of the couple with Down syndrome in Australia who were wanting to have children, and the public discourse surrounding this--worry, suggestions that they should be sterilized, that a life with cognitively disabled parents wouldn't be right for a child.  She wanted to know what I thought.

My answer emerged as a clear path in my own mind.  I knew exactly what I wanted to say, and I said it.  It was one of those answers where you think, "I wish I had this on tape!"  And then I got to think, "Wait--it IS on tape!  I'm being filmed for a documentary!"

I started off talking about how troubling it should be to all of us when societies decide who gets to procreate.  If sterilization is imposed on certain populations because we don't think they're quite human enough to deserve to reproduce, we might want to recognize that this was an idea appealing to late 19th-early 20th c. America, and consequently to the Germans in the 1930s.  Eugenics.  We should be very, very troubled by that ideology.

Then I took it in a different direction, sharing with them the fact that, in the year I was born--not that long ago--parents of babies with Down syndrome were routinely told by doctors that their child would never recognize his or her parents, would never talk or walk, not to mention read a book or ride a bike.  During the interview Maybelle was napping, so I couldn't say to Jess and Reuben as I say to you readers:  Look at Maybelle!

It was in the neighborhood of thirty years ago that doctors were telling people that a baby like this wasn't possible.  They weren't saying this because they were manipulative, evil bastards. They were saying it because they believed it to be true.  But it's clearly not true.  In a very short amount of time our whole perspective on Down syndrome has changed--because, as one author puts it, "in the early 1970s some parents did swim upstream against all they were told and brought their children home, worked with them, held them, provided them physical therapy and ‘special learning’ environments. These parents are saints and sages. They have, in the broadest sense of the phrase, uplifted the race. In the 10 million-year history of Down syndrome, they’ve allowed us to believe that we’re finally getting somewhere.”* Because these parents didn't believe the cultural myths and lies, they revealed them for what they were and made it possible for us to start creating communities that are better able to help all of us achieve our full humanity.

So I told Jess that if anybody ever says to me, "People with Down syndrome can't do X," or "Maybelle will never be able to X," I simply dismiss it.  We don't know what Maybelle will want to do or be able to do.  If, as an adult, she wants to partner with a person of her choosing and create a family, then I'll do everything I can to help that be possible for her.  I'll also help her to decide what college she wants to go to if that's her path, or I'll help her hit the road as a musician (like her dad) or a documentarian, if those are the passions that call her.  Maybelle's life disproves much of what the best and brightest in the medical field believed to be true about Down syndrome in the 1970s--and she's not even two yet.  Our cultural understanding of Down syndrome--and disability in general--has been so terribly skewed that I think we should ignore most of the "common sense" beliefs--most of which are bullshit--and assume that anything is possible. 


*Berube, Life As We Know It.

Lose the Training Wheels bike camp, final day

Today Jesse rode around and around on his bike like--well, like a kid who rides a bike.  He was so fast that his mom, the other spotter, and I had to take turns going with him because we'd get worn out.  He was, in fact, so fast that at one point, after running at top speed twice around the warehouse alongside him, I gasped, "Jesse, we have to stop!" and he said, "I don't want to."  He geared up to make a turn to go around the warehouse again, and I had to brake him using his safety bar because I was going to collapse from running so fast!  He was going to keep going--I stopped us!*

He also got good enough at steering that he was able to ride in between other bikers in the warehouse (it was pretty full today).  At one point when I was with him, he chose to ride into a column rather than into another biker who came up pretty suddenly.  He hurt his hand, but he took it in stride.  I told him that crashing is part of what makes you a real biker, and he let me kiss his finger, then was ready to ride again.  This from the kid who, on day one, needed to stop and gather himself after just riding near other bikers.  He has worked so hard and made such significant progress that it blows my mind.  He's going to have to keep at it for a few weeks in order to build what Maybelle's physical therapist calls a motor plan (LTTW pretty strongly suggests two solid weeks of practice after the camp), but then he's just going to be a kid in the world riding a bike, exploring, going places he wants to go.

35 folks took part in our bike camp, and at the end of the week 31 of them were able to ride a two-wheeled bike.


*This makes me sound like a bit of a loser, but I will say in my defense that Jesse's mom observed that he was biking faster with me than he was with the other two spotters, since they're both significantly shorter than I am.  Perhaps Jesse could tell that I was capable of running faster.  That, at least, is what I choose to believe.

Lose the Training Wheels bike camp, day 4

Guess who got up on his very own two-wheeled bike and biked around and around the warehouse this afternoon?

Jesse!

Lose the Training Wheels

Earlier this summer Aaron and Mary turned me on to a blog called Hyperbole and a Half, which consists of pretty funny comics that I can relate to.  For example, check out this post, which says a lot about my life these days.

An appropriately timed post popped up at the end of last week.  The author, Allie, writes about her bad experiences with bikes--a couple of crashes--that terrified her and made her a kid who didn't ride a bike.  This is appropriately timed because this week, all week, I am having the amazing opportunity to volunteer with a camp called Lose the Training Wheels.  Allie's text introducing the picture on the left says, "While all my friends were riding their awesome bikes around town making badass motorcycle noises and popping mad wheelies, I was the weird kid running behind them, trying but failing to maintain some semblance of dignity."  It's basically this experience that Lose the Training Wheels is designed to challenge.

It's a camp for kids with disabilities--often cognitive disabilities--who don't ride bikes.  The statistics are pretty grim:  between 10 and 20% of kids with Down syndrome and autism ride bikes.  The rest don't know how.  The ideology behind LTTW is that, if provided with encouragement, time, and appropriate support, almost all kids can learn to ride a two-wheeled bike, and they have an 85% success rate with a one-week camp.

This week I'm working with a thirteen-year-old kid named Jesse.  Another woman and I are his team, running around the warehouse space with him as he rides, helping him to steer and stop, motivating him to keep going.  The equipment for the bikes is pretty interesting--each bike's back "tire" is the size and shape of a paint roller, which keeps the bike from flipping, and they switch out the rollers so that they're more and more tapered as the bikers get more skilled.  All the bikes have handles on the back for help from the team.  But what's far more interesting than the equipment is the experience of working with Jesse.

Jesse has Down syndrome, so he has low muscle tone.  It also takes him a little longer than a typical kid to process all the new information coming his way kinesthetically and cognitively from the bike camp.  In other words, he has to work his ass off.  But he's done it now for two camp sessions--biking around the warehouse again and again for 75 minutes each day.  At the end of the first session, I told his mom how well he'd done.  She said, "That's really great considering how terrified he was of bikes."  He hadn't let on to us that he was scared.  When we asked initially if he was excited, he said, "Maybe."  He was pretty quiet for the first part of the camp, but he warmed up to us and the process as the session went on, until by the end he was saying "Super fast!" and, as Allie says above, "Making badass motorcycle noises."  Today he was pretty tired, and my teammate and I had to be creative to get him motivated, but by the end of the session, he had gotten visibly more confident and more skilled on the bike.  He'd even started his own creative campaign to motivate himself to bike:  he told the other woman that there was a bird flying in the air near her, and while she looked around to find it, he and I took off as fast as we could, and she had to run after us.

At one point today two other kids on bikes swiped by us pretty closely.  As soon as they were gone, Jesse stopped the bike and rested his head in his hands on the handlebars for a minute.  He looked a bit shaken, like that had been a lot to take in (particularly since, as I knew from his mom from yesterday, he was terrified of bikes).  After a moment, he lifted his head and was ready to ride again.  When I read Allie's blog post about her childhood terror of bikes, I think about Jesse, who's confronting his fear of bikes head-on, working himself to exhaustion, and without question going to learn to ride a bike.  I'm so excited to get to work with him.

Update:  Here's a news story about this program, from last night:

Pictures to illustrate the tweets

Some of my delightful family members photographed our weekend in Connecticut, so I wanted to share some of those with Baxter Sez readers (many of whom, I realize, are in these pictures).


My cousin Sarah and I were, as far as we could tell, the only two women attending the wedding in pants. We weren't the only feminist women at the wedding, but the other feminists in our party had gone all girly.  Don't we look good?  (The girly folks looked good, too.) (And thanks to Claire for my shirt!)


Here I am with my brothers, who proved later in the weekend what dancing geniuses they are.  I don't know when's the last time we've had a sibling photo like this.


This is the whole gang of us, minus Mary, who was taking the picture, and also minus the Connecticut Piepmeiers, who were in wedding mode.  An annotation to this photo:  we all went to brunch together on Saturday because, in the brilliance of his leadership skills, my dad sent word around the table at the rehearsal dinner:  "Meet in the hotel lobby tomorrow morning at 10.  Pass it on."  Then by 10 the next morning, he'd found a brunch place that could seat us all, and we followed him there, herd-like.  Had he tried to allow this to be a group decision, we would still be trying to decide about brunch right now.

Mary didn't take any dancing pictures because she spent the entire night, like me, on the dance floor (you can see her on the right, wearing a navy dress). So here's a picture my Aunt Suzanne took.  Notice my brave Uncle Joe dancing with us!  As he pulled me onto the dance floor, he said, "You take the lead!  I have no idea what I'm doing!"  And damned if he didn't just follow along and look as ridiculous as the rest of us.  Good for him!  Sadly, you can't see me, but that's my hair flying up on the left.

And here's another sibling photo, this one of the oldest (!) generation of Piepmeiers:  Joe, Suzanne, and Lee.

Tweets from today

• Wedding reception dancing is among the best dancing experiences available.
• The key to having a great time dancing is to consciously make the decision to feel comfortable being ridiculous.  It helps if you recognize that your own ridiculous exuberance will make other people feel better able to dance.
• My brothers are both dancing geniuses.
• I had the best time with my brothers tonight that I've had in years.
• I suspect we'll be on the internet soon.

Alison, from the road

I'm in Connecticut for my cousin's wedding this weekend.  If I were a Twitterer, here's what I might have written so far:

• Taxi to the CHS airport.  Driver made careful mention of racism.  I said, "If you're talking about Charleston, I'm sure it's racism."  Delighted, he then launched into a civil rights lecture that lasted the rest of the trip.
• Surprise extended family mini-van trip from the Hartford airport to New Haven.  Made Uncle Rodger be the ceremonial dad and drive us all.
• CT Pieps seem very concerned that the unairconditioned church will be too awful for the wedding.  As the SC Piep, I assured them that the church will be embarrassingly non-hot.
• "They call this hot?  In SC, we'd be wearing sweaters!"
• Aaron assures me that my toxic irritability spirals could be made into a comedy routine, even though I'm actually not funny.
• Uncle Rodger is now referring to it as "toxic irritability syndrome" and is going to start defining the characteristics.
• Only one sexist toast made at the rehearsal dinner, so hurray for that.
• Reassured my immediate family that if they accidentally say "retarded," I won't immediately descend into a toxic irritability spiral on them.  See me having a good attitude!
• Learning some very interesting family stuff, some of which is probably only interesting to me, and some of is probably too personal for Baxter Sez.

Too Late to Die Young, by Harriet McBryde Johnson

Shortly after I got to Charleston, I suspect sometime during my first year, we had an event on campus that I sent out broad community emails to advertise. CofC is a campus that has very, very few spaces that are accessible. I got an email from a community member I didn’t know who told me in pretty clear-cut terms that I’d scheduled an event in an unaccessible space,a space which she--as a person with a disability--wouldn't be able to enter. She said it wasn’t right, and given the values of WGS, it was hypocritical. I responded quickly: yes, she was correct, but those spaces are so limited at CofC! And I’m out of town right now! And there’s nothing I can do, but I’ll certainly keep this in mind for the future. She wrote back, dismissed my excuses as offensive justifications of unjust behavior. I thought, “Holy crap! How dare she!”

Then, when I’d had a chance to get off my high horse and calm down, I thought, “She’s right.” I’d never try to justify behavior that was openly restrictive based on gender, or race, or sexual identity. What made me think it was okay to apologize for—and proceed with—behavior that was openly discriminatory based on ability?

I wrote her an email apologizing and promising that we’d find a new location for the event. And we found one. And she came.

Her name was Harriet McBryde Johnson, and it turns out she was a brilliant disability activist. Her memoir had come out sometime shortly before our encounter, and I read it and remember enjoying it very much. Just this weekend I finished reading it a second time, and it has blown my mind.

I’ve read so many memoirs this summer by and about people with various disabilities. Hers is far better than many, many I’ve encountered. I’ll be teaching it in my graduate class (Disability, Power, and Privilege) this spring, and I suspect it'll show up again and again in my upcoming research and writing. It features statements like, “When bigotry is the dominant view, it sounds like self-evident truth.” And, “For over one hundred years, a powerful medical-industrial complex has trained us to think that people judged unable to care for themselves must, for their own good and the good of society, be consigned to government-funded lockup. Even forward-looking thinkers don’t recognize the incarceration of some two million Americans in nursing homes, psychiatric facilities, and other institutions as a human rights violation.” And, “We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.”

Johnson died just a little over two years ago, here in Charleston. I’ve already learned so much from her: she’s the first person ever to call me out on my discriminatory behavior (and thinking!) about disabilities. But now that my politics, my feminism, and my life are growing more intimately connected with disability studies and disability activism, I see that I could have learned much more from her in person. She started coming to WGS events. She and I had a friendly acquaintanceship. I’m really sorry that I didn’t have the good sense to pursue her as a mentor when I had the opportunity.

River Boy

The official subtitle of this post is Talent!

Biffle is a fairly talented musical being, and since he's been in Charleston, he's had the good fortune of getting connected to a group of musicians who are are equally talented (well, okay, maybe not equally talented--I mean, I could make a pretty good case for Biffle's talent slightly exceeding the rest--but it's possible that I'm biased.) Shayne Floyd has a perfect bluegrass voice, and he's a great bluegrass songwriter, too. Bob Sachs is so skilled on the mandolin that for years he commuted from Charleston to Cambridge, MA, to play bluegrass in a national bluegrass mecca, the Cantab. These three guys got together and made an album called River Boy, consisting almost entirely of original songs written by Shayne. Biffle was delighted to get to be on the album, but even more so when Shayne invited him to be a coproducer--something he's always wanted to do.

The music is great. The thing I love the most about the album is that Shayne, Bob, and Biffle are all fabulous at inventing multilayered harmonies, so they're prevalent throughout. And they've just come out with a video for the first song, "Caroline." This is my favorite song on the album for a number of reasons--one of which may be the fact that this was the song mastered by one of Biffle's best friends, Neal Cappellino, who is, as long-time readers will remember, a Grammy-winning producer and engineer.

I'm not much of a fan of videos in general, and this one hasn't radically changed my attitude on that front, but the song is really worth listening to. And the video is worth it if you wait until the end, when you'll see Shane and Caroline together. Plus, Bob, Shayne, and Biffle are pretty cute.

Hi: It's "Biffle." Thanks--or props, as the cool kids say--should go out to Alison for posting this shameless bit of promotion. She did a good job, but still, i'd like to clarify some things: Yes, she's right that Shayne Floyd has a great bluegrass voice and is a great songwriter. She's also correct about Bob being good enough to be flown in to Boston, but she's incorrect about where he played. It's an understandable mistake, and there's a story in there actually. Here it is:

One night--here i Charleston-- i was called up to sub for someone at a gig. I'd gigged with the band before but this time there was a new mandolin player. Well, you've been watching musicians play sometime and seen them lean in toward each other and start to have a conversation not privy to the rest of audience, right? If you're like me you want to know what they're saying. Well, it kinda goes like this:

Hey, I'm Walter.

Hey, I'm Bob.

Haven't seen you before, Bob. You're a great picker.

Thanks. You too.

Where you been playin?

Well, i live here but i've been commuting up to Boston for a band I play with there.

Oh yeah? I used to pick up there. At the Cantab.

Oh yeah? Our banjo player is a member of the house band: Rich Stillman.

No S***t! I've picked with Rich a whole bunch.

_______

Okay. So the moral of the story is that it's a small world. Oh, and also that those esoteric conversations musicians have on a stage are mostly as pedantic as those you have in your daily life.

So, yes, Bob was flown in to Boston, but not to play at the Cantab, but to play with a band called Southern Rail at various venues around New England.

Next, i don't know how i feel about outing Neal on this project. I'm sure, as an engineer, he's been involved in some plenty of less-desirable projects, so i guess it's okay. Anyway, Neal didn't master Caroline, he mixed it. And he did a way amazing job of it. Thanks, Neal! I still maintain that if i had Protools, limitless time and a room full of monkeys with iMacs i coulda done as good a job, but that wasn't in the budget, so, so be it.

Finally Alison left out a final thing: In the 5 year, nigh-on-700-post history of Baxter Sez, there hasn't been a single commercial post. Mentions have been made, but nothing has genuinely tried to be sold on this website. That said, this is actually Shayne's baby, not mine, so i don't feel too bad about pluggin it.

So: If you like, you can go here and check out the songs on Itunes. Or, you can go here and see Riverboy's Facebook page.

Okay. Thanks.

Urban baby

Maybelle is an urban baby.  This is different than how Biffle and I both grew up.  I was a small-town baby, and he was a suburban one.  This meant, among other things, that we both had big yards to play in, so we mostly played in our yards.  I did a lot of tree climbing and swinging on our backyard swing set.  Biffle--at the age of four--would ride an adult-sized bike down their long, steep driveway and over a bridge that spanned the creek in their backyard.  This was the activity that ultimately resulted in the incident referred to in the Biffle household as The Time That Walt Knocked His Tallywhacker Off.*

But that's not the point of this post.  The point of this post is to offer an observation about Maybelle's life as an urban baby.  We have no yard whatsoever, so while Maybelle can play a bit on our front porch, if she wants to do any more expansive outdoor activity, it means we have to leave the private world of our household and go out in public.  We've always known that this would be the case, and for many reasons, it's a great thing.  Indeed, it's one of those areas where I can start to feel smugly morally superior to parents of suburban kids.**  When Maybelle wants to swing or slide, we go to one of several nearby public playgrounds, where she may very well be interacting with other kids. She gets a sense of a world that's diverse, populated by lots of different folks and their dogs.

The thing that's sort of surprised and delighted me about this phenomenon is just how very public her life is.  I've noticed in recent weeks that, almost literally, I can't leave the house with Maybelle without people making sweet comments to us.  This morning she was riding in the backpack, and a guy stopped his minivan in the street to say, "You both look so relaxed!"  This car-stopping phenomenon is strangely common.  When Maybelle is riding her tricycle--a sight so cute that you can barely stand it--people will roll their windows down and stop traffic to say things to us.  "Look at her, riding along!", or, "Where did you get that?  I've got to get my nephew one!"  When she's walking down the sidewalk, holding on to one of our fingers, people will say, "Oh, yeah, working hard!" or "Look at her, walking along!"  The same when she's riding in the baby seat on the adult bicycle; just last week a city worker rolled his window down to say, "Big girl on the bike!"

It's clearly not the case that folks have important content to convey to us.  They're just letting us know that Maybelle is an adorable person--significantly, an adorable person out in the world, being watched compassionately and warmly by people in the community.

*Not literally, but it's still a good story.  Perhaps a blog post sometime soon, if we can encourage Biffle to share.
**Never, ever a good idea, I know, but I've been irritable and sort of intolerable here lately.  Perhaps another blog post about that later.