Here are my children, side by side on a green carpet, with a crib and the window’s winter light behind them as they play with dolls that jingle when you shake them.
Here’s Petra, unsuspectingly happy. Here’s Fiona, looking a touch dubious. A lot is going on behind those eyes, people often tell me, and I couldn’t agree more, although I often have to wait a beat before learning exactly what.
Fiona lifts the dolls over her head. Petra remains smiling, unsuspecting.
You thought Fiona was going to chuck the dolls at her sister, didn’t you? So did I. Instead, she lets them drop behind her head, offers a smile that says, I’m sweetness.
She then reaches out to touch her sister. A touch of love? That’s right, I tell Fiona. Gentle touch, even as I wonder if the look in her eyes really means war.
In one fell swoop, Fiona takes her heavier sister down.
Then starts kicking her. At this point, I set the camera down and intervene.
Don’t kick your sister, I say. She looks at me, all defiance, and does it anyway.
Although she can sometimes look practically angelic…
…my daughter is no angel, and I love that. All those sticky emotions of the human experience—jealousy, anger, defiance, rebellion, frustration—demonstrate her development. She’s two, and while I know she doesn’t get around like a two-year-old or eat like a two-year-old or communicate like a two-year-old, she certainly acts like one.
The other reason that I love these emotions, however, is because they challenge preconceived notions about what it means to have cognitive disabilities.
During Fiona’s early weeks, before we had a diagnosis and before I knew to chuck nearly all the baby manuals, I often consulted Dr. Sears’ giant The Baby Book. If you’ve never seen it, The Baby Book is a 700-plus purple tome on parenting small people. Within those 700-plus pages are only four on parenting a child with special needs, specifically a baby with Down syndrome. I don’t remember what led me to read them, or whether it was before or after birthing Fiona, but I do remember reading this: “In general, these babies [with Down syndrome] are affectionate and just plain happy. Many share constant hugs and kisses and radiate a generally carefree attitude….There is indeed an up side to babies with Down syndrome.”
How wonderful, I thought at the time. Trade cognitive aptitude for a relentlessly agreeable disposition? It sounded fair enough, the universe balancing the scales. I read the paragraph aloud to my husband.
He shook his head. He disagreed with the stereotype. He said he’d worked with people with Down syndrome who were not always happy. Some of them, he said, could be mean, just like any other person.
At first, I was disappointed. I liked the idea of the happy-go-lucky child with disabilities. I did not like the idea of a mean child with disabilities or a sad child with disabilities or a child with disabilities who experienced any of the other, tougher human expressions. Where was the trade-off if you had significant physical and cognitive challenges but you also had to muck through the full drama of the human experience?
Here’s where a look into my past self — the self I was before Fiona’s diagnosis — reveals a lot of embarrassing beliefs. I’ve written about being embarrassed by my former self before, specifically here. In my reaction to Dr. Sears’ paragraph on Down syndrome, I was subscribing to the myth that people with cognitive disabilities were emotionally more precious, more innocent. More divinely good.
Now that I parent Fiona, now that I’m immersed in special needs parenting, I see this view more often. It’s a popular one: the belief that she and her peers are pure. That they are angels. The belief that while their disabilities are dark clouds, the “silver lining” of their existence is an angelic, docile, totally agreeable disposition.
And even while I continue to hear this perspective, I meet plenty of kids who defy it. “Sugar and spice,” my friend says of her daughter with Fiona’s same syndrome, because her daughter can be both very naughty and very nice.
At a conference, I met the family of a man who is non-ambulatory, non-verbal, and tube fed. His sister told me that, even with zero words and a very limited range of movement, he teases her, manipulates her, drives her crazy as he finds ways to get what he wants. She said this proudly with a smile.
I know another family of a teenage girl who has similar limitations. Though her body might resemble that of a small child, and though she has multiple medical needs and can barely move on her own, her mother insists she is very much going through a defiant teenager phase. Refusing to cooperate. Getting annoyed with her mom. And of course, crushing on boys.
I love all this. I love that even people with very limited abilities to move and express themselves are still able to defy the stereotype. They are not the rest of the world’s living angels. They are people.
I don’t just believe the angel myth is wrong; I believe it’s dangerous. To be human is to be messy. In many cases, it is to be mad sometimes, to manipulate other times, to be mean or ornery or grumpy, or a long list of other unlikeable things. If we label a person with disabilities an “angel,” then we are in jeopardy of removing another label from them—“human”—and that label is the one that guarantees them dignity, rights, and respect.
This afternoon, after bundling the girls up in preparation for a walk in the blustery single-digit degrees, I turned my back to tie my shoes. I heard Petra laughing. When I looked behind me, I saw this:
Fiona, tackling her sister…
Her sister’s no angel, and she seems to love it too.