I'm one of the latecomers to disability awareness, which is unfortunate because it fits so beautifully within the feminist worldview I've been developing since I was probably 12. Harriet McBryde Johnson made me aware of the connection early in my time at the College of Charleston, something I've written about here before. If you're someone who believes that all people are fully human and deserve to have their full humanity recognized and respected, then you're a feminist, and you're also someone who should be a disability rights advocate.
My connection to disability was enhanced in 2008, when I was incredibly lucky and gave birth to Maybelle, a person whose Down syndrome has opened new doors for me, new ways of seeing the world.
Before Maybelle's entrance on the scene, I was someone who was uncomfortable with disability, particularly intellectual disability, mostly because of lack of practice. As it turns out, there isn't anything inherent in intellectual disability that triggers discomfort--my discomfort came from the fact that I'd been raised in a mostly-segregated world. In my schools growing up, people with disabilities were locked away in their own sections of the school. "We"--those of us without disabilities--didn't even get to see "them"--the people with disabilities. That segregation, of course, helped to create those categories of "us" and "them" that came to seem intuitively obvious but, in fact, aren't at all.
There's no "us" and "them" in Maybelle's school. She's another kid in her class. This is one of the things that integration achieves: a bigger "us."
So these days my connection with disability is the fact that I'm a human being in a world of human beings, about 20 percent of whom have disabilities. The longer I'm around, the more likely it is I'll have one, too. And I have the good fortune of living in an integrated family, one that repeatedly demonstrates how cool Down syndrome is.
We're having a fantastic Memorial Day weekend around here because Catherine and Uncle Trey have come to town. This has led to some tricky sleeping situations, since we have a two-bedroom house, and one of those bedrooms is Maybelle's. In case you're interested, Catherine and I have been in the king-sized bed (with some snuggly visits from Maybelle), Walter's been on the air mattress in Maybelle's room, and Trey's been on the couch/futon in the living room. We've all managed to share the one bathroom quite effectively, including Little Ms. Potty Training.
So here's the photographic story of our time together. Friday night we had a group dinner at the Two Boroughs Larder. It's one of Biffle's and my new favorites: funky, local food in a non-stuffy space. Please note that in this picture my mouth is bigger than Trey's even though he's trying harder. Natural talent on my part.
Saturday we went to the beach. It was a windy day with serious waves, but it was actually warm (unlike last weekend), so we all played in the water quite happily. And let me say that when we got home and showered, butt cracks were an important point of cleansing for all of us.
We also ate lamburgers at the Curtis-Krasnoff house. I'll try to post a picture from there, but they're on Trey's actual physical camera (as opposed to cell phone), which means it may be awhile before we get them.
Today one of the things we did was walk along the Mt. Pleasant Waterfront Pier. It was really, really windy. Catherine took an excellent cell phone self-portrait of us.
Yesterday morning we went to the beach. It was my mom's request, because she knows how much Maybelle loves the ocean. It was a chilly morning--65 degrees, which for Charlestonians is COLD! So we bundled up.
Here's what happened about 30 seconds after we got to the beach:
We were there for around an hour. Near the end of our time there, here was the situation:
The one thing appealing enough to Maybelle that she would leave the beach was the prospect of pancakes at Early Bird. Here she was waiting for our table:
We'd brought her a dry change of clothes, but she was cold, so Biffle put his vest on her.
All in all, it was an excellent morning.
And by the way, today is Biffle's birthday! No beach trips planned.
Kelly Piepmeier has been in town since Tuesday. She mentioned in passing today that one of the reasons she wants to get a house or apartment in Charleston is because she doesn't want to keep being a burden on us by staying in our house when she comes to visit.
Here are some of the ways my mom has been a burden on us:
- She made granola her first night here. I have eaten, as of just now, six bowls. It is so unbelievably delicious that, well, I can't believe it.
- Wednesday night and Thursday nights she made us dinner. Wednesday: grilled tilapia in mango salsa. Thursday: omelettes with zucchini and goat cheese. Oh, and she bought all the groceries for both meals.
- Tonight she's not making us dinner because she offered to stay here with Maybelle so that Biffle and I can go on a date.
- She's taken me out to lunch every day this week, at three delicious restaurants.
- All day every day for the time she's been here, she has taken part in major spring cleaning of the house. For instance, on Wednesday, we went through all the baby gear in the attic. We filled the living room with stuff that we're not using anymore. We distributed six full garbage bags of clothing, toys, stuffed animals, and books to friends and colleagues who have babies, not to mention swings, strollers, etc.
I've been a bit lax in my posting over at Girl w/Pen, but I've put a new post up this morning: "Gendering my daughter." Head over and check it out!
Maybelle's been talking for a long time, but we're seeing some cool shifts recently.
She's been saying full sentences for months. In the fall, I think, Biffle recognized the extent to which Maybelle would ask for things using one word: "Music!" "Yogurt!" "Bounce!" So we started responding to the one-word requests with, "Use a full sentence, please." Quickly she learned to respond, "I want music, please." That formulation became what "full sentence" meant to her: "I want _____, please."
So that counts as speaking in a full sentence, but it was fairly limited. She'd learned the code and was repeating it. What's happening lately is that she's putting words together in ways that aren't just memorized repetitions. This isn't to say anything bad about memorized repetitions--they're part of how all of us speak. Much of our daily communication consists of memorized phrases that we insert because this is where they usually go ("How's it going?" "Alright, how are you?"). Maybelle, in fact, has a lot of phrases like that. When it comes to jumping or swinging, she'll say, "One more time!" quite competently. But Maybelle's moving beyond that, which is exciting to see.
The other day she pointed to her left elbow. "Elbow," she said.
"Yep," I responded. "That's your elbow."
Then she pointed to her right elbow. "Other elbow."
"Wow, yes, ma'am!"
We had a kind of conversation there. It was really cool. And I'd never talked to her in that way about her elbows--she wasn't repeating a routine we've been through.
We're seeing a similar phenomenon with the "first, then" formulation. We do this all the time, and they do it at school, too: if there's something we need her to do, we often offer her something fun after. "First wash your hands, then we can snuggle." She now understands this formulation and how it works, so she uses it for her own purposes. She knows how much we want her to sit on the potty (another post about that will be coming soon), and she'll use this to get things she wants. We'll ask her to sit on the potty, and she'll say things like, "First potty, then 'Up with People,'" or "First potty, then Big Red Chicken [what she calls Dora the Explorer]."
And she remembers the bargains we've made. The other day Biffle was trying to get her to eat some eggs and toast. She requested yogurt, but he said, "First eat some eggs and toast." He was hoping to distract her so that she'd have a full meal of eggs and toast, but several minutes in, after she'd eaten bites of the food he was offering, she looked at him and said, "Now yogurt." We were impressed (both at her memory and at her appropriate use of "now"), so she got her yogurt.
Update suggested by Biffle:
Maybelle's also developing a sense of humor. When I'm biking around with her, she often touches my elbows and yells, "Go go elbow!" I have no idea where she got that--I think she made it up. It's pretty cute.
A more substantial example: because we are responsible parents, we've taught Maybelle the word "fart." And let's be honest, because she's related to Biffle, she's able to produce them. The other day she let one fly, and then announced, "Fart!" I laughed and agreed. And then here came another one, and the announcement, "Fart!" "Yep," I said, laughing harder. Then paused a moment, looked at me and said, "One more time," and there it was: the third and final one, with perfect timing. Now that was seriously good comedy.
Today and tomorrow I'm taking part in a writing retreat on my campus. This is a surprisingly cool thing: each faculty member who's selected gets their own room, with a super-comfortable desk chair and a big empty table. We get a white board with markers. We get natural light, snacks and drinks throughout the day, and lunch with all the other faculty members. And we have to commit to arriving at 8:30am, staying until at least 3:30pm, and not emailing throughout the day. We're there to write.
We had to apply to take part in this, and it was somewhat competitive. It's sort of fascinating to me that so many of us wanted to be chosen. We don't get any money, or any prestige. What we get is support to write, and accountability. These things matter. We've agreed to take part in creating space and time for our writing, so we all take it pretty seriously.
I'm a bit of a compulsive email reader, and I didn't check my email today. I sat in my very own writing room, and I wrote. As I said on Twitter this morning, it's like camp for nerdy adults. I loved it!
In case you're curious, I'm finishing up an essay called "The Inadequacy of 'Choice': Disability and What's Wrong with Feminist Framings of Reproduction." Four years from now when it's actually published in a scholarly journal, I'll post a link here so you can read it.
So far today George Will's op-ed about his son, Jon, has been forwarded to me five times. Given that I am in the midst of grading and really, really out of touch with the world, I appreciate the fact that I have friends and family members looking out for me. I'm sort of surprised I haven't gotten it more times, given that Jon Will has Down syndrome, and that's what the article is about. Tomorrow is Jon Will's 40th birthday.
There's a lot of stuff I don't love about this particular article. Some of the rhetoric is troublesome: I resist the word "defect" being used in any context with Down syndrome, and I certainly never use the term "mental retardation" (and neither should any of you readers! We say intellectual or cognitive disability now). I think it's interesting that George Will frames his son Jon as imperfect, in a way that he implies his other children aren't. I'm sure all his children are imperfect, because they're all human. More importantly, my views of prenatal testing and abortion are quite a bit more complex than George Will's. I'm no fan of the 90% abortion rate he makes mention of, but I'm also not somebody who sees abortion as the killing of children, and I believe that women must absolutely have the right to control their reproduction.
But the thing that's really interesting is that, because of Down syndrome, I'm actually able to find points of connection with George Will that I suspect I wouldn't find in any other context. He makes some very nice points that I agree with, as when he says,
In 1972, people with Down syndrome were still commonly called Mongoloids.He also ends his article with the image of Jon at Nationals Park, at a Caps game, "just another man, beer in hand, among equals in the republic of baseball." As my friend Claire pointed out, this is an image that works against so many of the infantalizing images we have of adults with intellectual disabilities. I like it. And as I shared with Claire this morning, one of the very early hopeful pieces we read shortly after Maybelle was born was an article by George Will about Jon, in which he expresses his pride that Jon voted for Bill Clinton. His son, he made clear, is a person in the world who has his own opinions--opinions which might be radically different than his father's. It's been nearly four years since Biffle read that piece to me, and I still remember it.
Now they are called American citizens.
It's so easy to be divided. It's so easy for us--whatever "us" you want, scholars or thinkers or citizens or folks living in a country together--to get polarized and to stop listening to one another. We become stereotypes or soundbytes. I'm grateful for the fact that disability gives me a way to step out of that polarization.
George Will and I have very little in common. But we're both parents of people with Down syndrome, and I suspect that's enough to open a little crack in the door that would make it possible to talk to one another as people rather than being boxed in by the political stereotypes we have of one another (well, to be frank, I doubt that George Will has that many stereotypes of me, but you know what I mean).