4.15.2009

Sweet Maybelle

One of my pet peeves as a parent of a baby with Down syndrome is the belief out there in the world that people with Down syndrome are naturally sweet. I encounter this belief in various ways. When I told one potential babysitter that Maybelle has ds, she said, "Oh, my mom works with kids with Down syndrome, and they are so sweet!" In the months after Maybelle was born, Biffle's mom routinely told me how sweet people with ds are. An acquaintance--the mother of a challenging teenager--quipped, "Well, at least she won't be backtalking you when she's thirteen!"

I find this belief troubling for a couple of reasons. First of all, it's reductive. It flattens Maybelle's personality, implying that she'll have one mode or valence, and that will be sweetness. Sometimes this is offered in a kind of compensatory way: "It's too bad that your daughter's fucked up, but at least she'll be sweet!" And to that I say, it's just not true. Of course she'll be backtalking me when she's thirteen--she'll be a teenager with hormones and opinions and a desire to differentiate herself from her family. Perhaps, as my dad has always warned me would happen, she'll start defining herself as an Alex P. Keaton-style conservative. Or perhaps Biffle and I will be too mainstream for her and she'll be playing bass for a punk rock grrrl band. It doesn't matter--the fact is that she will be a complex person in the world with thoughts and feelings all her own. She'll have sweet aspects to her personality and aspects to her personality that will make me want to pull my hair out. And good for her!

The second reason I dislike this belief is that it suggests that sweetness is just a symptom of Down syndrome. As it turns out, Maybelle is a really easy going baby. She's interested in the world around her, she likes going places in the car and stroller, she's invented some fun games (like pulling off glasses and sucking on my lower lip), and she's a good sport about all the therapies she has to do. These are aspects of her personality, some of the things that make her uniquely her. They aren't symptoms of a disease. The belief that all people with Down syndrome are sweet means that Maybelle doesn't get any credit for her personality traits, and I find that wrongheaded and unfair. I think it's one of the more benign manifestations of the ways in which we view special needs people as not fully human.

11 comments:

claire said...

And let's not forget that if she was a boy with ds that the term might be different -- sweet is so female -- and is so oddly desired in the female child. So much of other people's responses to children seems to be about finding the right label: the good child, the athletic child, the smart child. Let them be who they are! (And let them decide who they want to be.) I would describe Maybelle as intent -- she is figuring out the world -- and figuring out what she thinks about it.

Cate Bush said...

Rock on! I too have heard this comment made about children with DS and it's bothered me. For one I know it's not true and as you so passionately stated, it's reductive. I like what Claire said as well.

love,
C

Alison said...

Claire--

Yes, there are definitely gendered components to "sweetness"--good point. Biffle and I have talked a bit about what it might mean to have a boy with ds, and I may blog about that one day.

I like the description of Maybelle as intent.

And sorry to have posted perhaps not the world's most flattering picture of you and Maybelle! Both of you are aptly demonstrating that sweetness is not the only response available to you.

Myrlyn said...

The idea behind the inherent sweetness is not that they're always sweet. It's that they don't have that same penchant for tossing firecrackers into anthills that six year olds with firecrackers have.

They, of course, have moods and attitudes and thoughts and the need to express them. They get distressed and angry and happy and sad like everyone else.

It's just a mark of the lack of mindless assholery that a lot of people suffer until they grow out of it, and the ability to understand why someone would be that much of a jerk for no reason.

I, personally, can't wait 'til she yells at you the first time for no clear reason simply because she's a teenager and that's what teenagers do.

Rebekah said...

I appreciate this post - thoughtful and thought-provoking.

The Mom said...

Well, Alison, another good post...and good and thoughtful responses from your friends and family. Thank you for bringing this thought into the light. I hope I haven't been "guilty" of spouting that idea, but I certainly might have! You think so much more deeply and clearly than I do so many times. I'm glad you're my daughter! And that Maybelle, with all her different moods, is my lovely granddaughter! And I'm grateful for all the ways you enlighten me.

claire said...

I like the picture. Maybelle and I will have many opportunities for facial antics!

Stephanie said...

I just read this after looking at the comments on the NY Times piece and wanted to add that I'm entering those teenage years with my son, and the "kids with DS are so sweet" routine has long lost its savor with me too. Though I always found it dehumanizing, I tried to handle it good-naturedly. Andy is a typical teen who tells me I "ruin his life" and mocks me in a sing-song voice when I tell him to take out the trash. But he also makes my bed unprompted (occasionally) and tells me excitedly about his day when he gets in the car after school. He's just a kid with all the complex and wonderful human-ness that entails.

Alison said...

What great feedback, Stephanie--thanks! I'm glad that Andy is a typical teen. And good luck with that!

lapequenasilvia.com said...

Hi Alison,

I'm just arriving your blog because you've been mentioned in one of the most popular newspapers in Spain, "El Pais", about your post in Motherlode about abortion rights.

About the sweetness of the children with DS, I've a baby of seven months and DS. Her name is Silvia and yes, she's lovely and easy going, but she has her temper and somethimes I would throw her thought the window!

All the people-good people who want to confort me - who knows that my child has DS, tell me inmedialy "but she is going to be sweet, she's going to give you a lot of kisses and she's going to spend her whole life with you"

And I've to explain them that I hope Silvia would be sweet and kiss me a lot, but I hope too that one day she said me "goodbye mummy" and start to live her independent life.

It's so difficult to teach people than stereotips are this. But we've a lot of work showing the world that our children are not huggy bears.

Greetings from Spain!

Ana

Alison said...

Ana,

Thank you for your feedback! I'm so glad that you came over to visit our blog. We're in a world now where you have every reason to believe that Silvia will love you AND go on to live an independent life.

I hope she has a full range of emotions, from sweetness to irritability to outrage to joy.