She’s No Angel, and I Love That


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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.

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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.

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Fiona lifts the dolls over her head. Petra remains smiling, unsuspecting.

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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.

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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

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In one fell swoop, Fiona takes her heavier sister down.

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Then starts kicking her. At this point, I set the camera down and intervene.

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Don’t kick your sister, I say. She looks at me, all defiance, and does it anyway.

Although she can sometimes look practically angelic…

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…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…

winter attack…and Petra’s face lit up in a smile.

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Her sister’s no angel, and she seems to love it too.

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8 thoughts on “She’s No Angel, and I Love That

  1. Loving the very essence of someone, ” warts” and all and even because of the “warts” is the most wonderful relationship one can have. Total acceptance is what is felt and what can be better than that.

  2. You’ve reminded me, with this wonderful reflection, of something a friend said recently about her son who has cerebral palsy and a seizure syndrome (whose situation actually has defied understanding and “diagnosis” to a large degree). Her son is well into his 20s and lives in a skilled care facility now. Anyway, what she said was that one of her co-caregivers commented quite a while back that if he’d developed speech there probably would have been a lot of cussing. My friend seemed to love that about her son–it said something about his particular personality and way of looking at the world. Her delight in him contains no illusions about him being all happy-go-lucky etc. for sure.

  3. Thank you for writing this. My first piece for CNN, now a few years ago, was on the limitations of the angel language. In general, I try to write about people with Down syndrome as whole people, not stereotypes, not even positive stereotypes. I’m really happy to find other people thinking similarly.

  4. If children with varying needs were considered “human” more often and less like angels, there would be less chance of people creating “pillow angels” out of human beings.

  5. My Dad’s baby sister had one child, a girl, born when my aunt was 40 years old. Because my aunt had RH factor (and had had a miscarriage a year or two before and that was back before Rhogam shots were administered to RH mothers immediately after delivery, the daughter she had was born with several physicaland cognitive issues. My aunt was a school teacher and as such, she was determined to raise her daughter to learn whatever she possibly could achieve -which wasn’t much in terms of communications/speech skills, but she definitely did (and still does) have a personality that has a devilish side as her main source of her sense of humor! At family dinners, she was always seated at the corner-end of the table by her mother and my oldest cousin present and she took great pleasure in watching cousin Mike as he presided over family dinners, watching for the least little bit of time when he didn’t have his eyes focused on her and then, the hand would go out and grab the tablecloth and she would pull on it, moving everyone’s dishes in the process! And Mike would growl at her then and admonish her with a stern “Jane Ann, you stop that!” To which she would straighten herself up a bit and laugh like nobody’s business at the game she had just played with him! She had other little tricks too that she would pull on my aunt -sometimes making my aunt laugh and at other times, making her angry too if it was something that made a bit of a mess. She now resides in a nursing home where she “visits” every single patient on her floor at least once a day, on her own, in her wheel chair. The other patients all know her too now and the nurses love her. Sorry such a long statement but just to say that I know first hand and agree completely with your interpretation here about those who live daily with these issues along with their family and/or caretakers! They are, indeed, human with a sense of humor as well as having other emotions too, just like all of us! Great post!

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