Increasing steps toward integration

Thanks to Claire for telling me to look for this article in the NYTimes today.  It's called "After a Lifetime in Institutions, a Rocky Trail to a Group Home."  The article offers the case study of the process of moving individuals with intellectual disabilities out of a formerly huge state institution in Georgia--Central State Hospital, which was formed in 1842, at one point housed 13,000 people with intellectual disabilities.

13,000 people.  Locked up in an institution because parents were told to lock them up, and because there weren't other sources of support for the families out in the world.

The article tells the story of Wally Burns.  When he was a year or so old, he wasn't doing what other kids did, so his mom took him to a doctor, who pronounced that he'd never sit, walk, or talk.  She proved the doctor wrong, helping her son to learn to walk and speak, but she was the only one providing support for him, and eventually she felt that he was unmanageable and dangerous to himself, so she agreed to go along with the pressure from the doctors and institutionalize him.  As the article says, the eight-year-old boy was "screaming and crying and clinging to her legs."

Stuff like this gives me a sick feeling in a way I guess it wouldn't have, back in my pre-Maybelle life.  I would have felt outrage, but it would have been a more detached outrage--recognizing injustice, but not feeling the impact of it the way I do now.  Burns doesn't have Down syndrome, but doctors have historically given parents patently wrong information about Down syndrome, just as they gave Burns's mom wrong information.  I imagined them pulling a crying Maybelle off of me, and thinking about the world that was in place that would have made me think this was the right decision.  A child who knew who his mother was, and who was expressing his desire to stay with her, being torn away.  The mother believing this was the right decision, because the world was telling her again and again, this is the only thing you can do.  You must do it.

I was surprised to learn that there are so many institutions still in existence (Mississippi has 2000 citizens institutionalized right now), but they're all in the process of being dismantled because the Justice Department "in recent years has threatened legal action against states accused of violating the civil rights of thousands of developmentally disabled people by needlessly segregating them."  This is heartening.  The Americans with Disabilities Act is heartening.

And let me tell you what else is heartening:  the Arc of Macon.  This is the group they focused on that's building and staffing small group homes for former residents of institutions.  The article offered three additional brief stories about residents of Central State moving into Arc of Macon homes, and the stories demonstrated ways in which seeing a person as a person can make a remarkable difference in that person's life.  For instance, one person has autism, and due to stress from the move, was banging his head and doing things like smearing feces on the wall.  All reasons to say that a person is "beyond help," right?  Too much trouble.  Instead, Arc of Mason reported,

They noticed that Mr. Lawson liked the showers they gave him after he had dirtied himself, and that he often opened his mouth to drink the water.  They wondered:  was he acting out, in part, to get into the shower?  So they let him shower several times a day and gave him a buzzer to press whenever he was thirsty.
Ah, he wasn't beyond help--he was communicating, and they paid attention and understood.  Apparently things turned around dramatically for Lawson, who is much more peaceful and goes out into the world now--something he almost never did when he lived in an institution.

I had some problems with the article.  It used some really outmoded rhetoric, for one thing.  It described Burns early on as "severely mentally retarded," and I was like, "Listen, people, we don't use those words anymore!"  Then they described one of his friends twice as "wheelchair-bound."  For those of you who are curious, we now say that someone has an intellectual disability and uses a wheelchair.  I would circle these as errors on student papers, so I'm sorry that the NYTimes editors didn't do the same.

I was pleased, though, that we got to see how wrong Burns's doctor was.  By the end of the article, we read of him dancing to disco, waving when people greet him, and going out every day into the world.


Finally, the story about the Palmetto Invitational

Awhile back I told you that Biffle, Uncle Trey, Maybelle, and I went to the Palmetto Invitational Classic, a fabulous marching band event.  I said that I couldn't tell you about it because I was going to write about it for the Charleston City Paper.  So here's the link to that article, which came out today:

"Confronting segregation in Charleston:  An invitation."

And one other thing completely unrelated to the article.  Maybelle is sleeping late this morning (it's 7:34 and she's still asleep!), and I'm letting her.  I get that as a four year old, she's at the age when I probably need to wake her up if she's not awake in time to get ready for school.  I get that I will probably regret making this choice.

But when was the last time I had a cup of coffee, blogged, and read my friends' blogs alone in the quiet house in the morning?  Let's see, I guess that would be four years ago.  I'm enjoying it.



The other day Maybelle and Biffle came by my office at the end of the work day, so that we could bike home together.  As I was holding Maybelle, I asked her to name everybody in the room--a sort of cute and also educational strategy we engage in a lot. 

"Who is here?"  I asked.  I pointed to myself.  "Mama," Maybelle said, then, "Boppa," and "Amber," who works in the office and babysits for Maybelle fairly often.  Then I pointed to Ashley, who's come to our house on multiple occasions.

"Dammit," said Maybelle.

"What?" I asked.  "Her name is Ashley."

"Dammit," Maybelle confirmed.  I got her to repeat the word Ashley, but that seems only to be a friendly nickname we offer.  In Maybelle's mind, the girl's name is somehow inexplicably "Dammit."

Of course, we inadvertently reinforced this misnomer by laughing every time Maybelle identified Ashley that way.  Claire warns that it's cute now, but once she gets to public school, we'll have to be sure Maybelle understands that the teachers there don't find swearing as adorable as we do.



Please go below and read Biffle's post, "Continuing a long tradition of putting very personal things in public places" (such a true statement about Biffle).

Then come back up here for something much funnier:  I am a guest star on Uncle Trey's podcast, Jawgrind!  It's episode 22, "Respectable Voltage." I was brought on as the feminist expert to comment on the misogyny of "Metamorphosis," an episode from the second season of the original Star Trek.  "Jawgrind" is all about old episodes of Star Trek.  The hosts are full-on nerds:  all computer-based careers, and all white guys.  AND they're all guys I'd like to hang out with (let's be honest, who did I spend my college career with?).

Uncle Trey records the conversations and then edits them, so he does hours of work to make "Jawgrind" happen.  It's pretty cool stuff.  This is a new level of fame for me.


No content beyond a video of Maybelle, and a great picture

Since Robin commented recently that she was disappointed not to get to see a video of Maybelle, we've decided to oblige (we're very reader-friendly here at Baxter Sez).  If you're looking for a Maybelle fix, this post is for you.  Here you get to see Maybelle's developing skills with the Mary Poppins song "Let's Go Fly a Kite":

Let's go fly a kite, 9-16-17 from Alison, Walter, and Maybelle on Vimeo.

Also, here's a picture her Uncle Trey took of her on the playground Friday: Monkey 2


Where the hell are the Biffle-Piepmeiers?

I know, I know--we've been really absent on the blog these days.  I haven't been reading blogs lately, either, so if my blog friends are up to amazing things, I don't know about it yet.  I'll catch up eventually--we've just had a lot going on.

Some highlights:

    Walking into the band competition.
  • Palmetto Invitational Band Classic:  On Saturday, Biffle, Maybelle, Uncle Trey, and I went to this fabulous showcase in the football stadium around the corner from us.  The event was so cool that I realized as I was writing a blog post about it that I really need to write an article for the City Paper about it.  This is one of the weird bummers about having a new/different writing outlet:  some of the things that would have gone here a few months ago now need to go somewhere else, and all that will go here is a link to the column.  I mean, I love having a column with the City Paper, but it feels a bit like I'm letting Baxter Sez readers down.  Kenneth Burns, is this why you stopped blogging?
  • Please notice in the picture above that Maybelle is carrying a cloth doll.  Her name is Leah, and she's a hand-me-down Groovy Girl from Nina, the person in the world most like an older sister to Maybelle.  As I write this blog post, Maybelle is eating breakfast, and Leah is sitting at the table with her.  Leah is much beloved, and she's quite the dancer.  It's interesting that out of the three Groovy Girls Nina gave Maybelle, Maybelle has identified Leah as her favorite--and that's the doll that was Nina's favorite, so much so that she has a notable bald spot from all the loving she received from Nina back in the day.
  • Visiting speakers:  Ann Fox is in town right now, and she's an ideal person to bring to campus, because not only is she fun to hang out with, but she's legitimately interested in the thoughts and experiences of every single person she encounters.  As I told Biffle last night, if she were sitting at the table with us, she'd ask Biffle what he does, and when he said he was a woodworker, she'd immediately have three truly curious questions about the work he does--questions that would be interesting for him to answer.  She's having lunch with some students today, and they're going to love her.
  • Jawgrind:  Here's the big news for tonight:  I've been invited to be a guest on the podcast Jawgrind!  I'll admit here that my friend Eliza made a tiny bit of fun of me for expressing my excitement for being on this podcast in which Trey and his friends discuss old episodes of Star Trek.  It is a bit of a nerd herd phenomenon, but I love the nerd herd.  Nerds are my people.  Plus, nerds are often a bunch of white boys, and they need some diversity, so I will at least bring the white woman voice to the herd.  Rest assured I'll post a link here when the podcast is up.
  • Family pictures:  One more thing:  check out the picture below.  What do you think?  Thanks, Trey!

Family Portrait the First


Evidence that Spielberg wisely refused the monkey penis that Lucas shoved deep into his neck pouch

Raiders of the Lost Ark is out on IMAX this week.  We saw it last night.  Do you know what Spielberg changed in the 30 years since he created the film?


Every bit of the film is the same as it was, all the melty faces and everything.

"He didn't even focus scenes that were blurry!" I announced with joy after the movie.

"That's because it was his artistic vision," Biffle said.  Neither of us needed to point out that Lucas doesn't even know the meaning of "artistic vision."

And where, nerd herd, were you last night?  Why weren't you all with us at the IMAX, loving loving loving Raiders of the Lost Ark?


My day yesterday

Before you read this, please watch the video on the post below.

Alright, now, here are some images that document my day yesterday.

My day started at 5:30, when Maybelle woke up. Biffle got up shortly thereafter and offered to let me go back to bed, but the second I woke up, my brain started spinning around and around the fact that bell hooks is on campus today!  I would not be going back to sleep.

Riding on Boppa's back
Here's Maybelle just before we got on the bike to go to school--she figured out how to climb onto Biffle's back.

Amber Cantrell and bell hooks
Of course the big event of the day was bell hooks!  She gave a free public lecture in one of the biggest auditoriums on campus, and it was full.  Folks came from all over--Myrtle Beach, Columbia, Georgetown--because she's that important.  The questions were fascinating, and bell (I get to call her that now because I know her) talked about the various things she's reading and thinking about.  Here she is with Amber Cantrell, who planned every detail and managed all the last minute crises that arose. If Amber didn't work for WGS, bell hooks would not have spoken on our campus.

And here's some of the winding down that happened after I got home from the series of successful events with bell hooks: Maybelle demonstrated that she finally knows how to sing "Let's Go Fly a Kite" from Mary Poppins.

"Let's Go Fly a Kite," 8-31-12 from Alison, Walter, and Maybelle on Vimeo.

Extreme parenting video

I've got other things to blog about today, so come back and check for those updates, but for right now I need you all to go check out this amazing video made by my blog-friend Elizabeth.  Biffle and I both make appearances, as do many, many other wonderful parents from around the country.

Elizabeth asked us to send in photos of the message we wished we could have given ourselves when we learned that our child has a disability.