Published on September 30th, 2013 | by Jennifer Natalya Fink4
AUTISMUTHA: Jennifer Natalya Fink’s Open Letter on Autism, Art + Love
Dear Pregnant Person,
Congrats. (Do you need to get up to pee? Go ahead. This could take a while.)
I want to chat about something. A yucky thing, if you believe the press. Autism.
First, I am not a martyr. In fact, I am not even a particularly good, patient, generous, or nice person. (Ask any of my many exes.) I am not an exceptional human being in any way.
I am, however, the mother of an exceptional child. My daughter has autism. She is exceptionally gorgeous. She is exceptionally brilliant, illuminated and illuminating. She is exceptionally challenging. She is enormously herself. She paints amazing abstract compositions in purple and black that look nothing like ‘children’s art’ and everything like the modernist masterpieces hanging in the museums. She is full of giggles and tickles and jokes. She loves to read but doesn’t love to speak. She knows lots about otters. And yes, she loves people. Far more than I do, actually.
When I became pregnant, I not so secretly (witness the prenatal purchase of the infamous ‘apple dress’) hoped my baby-to-be would be a girl. This was not a case of reverse sexism: rather, I knew the statistics about autism—knew that 80% of people with autism are male. I knew my nephew. How his life had changed and challenged my sister’s in ways I could only peripherally comprehend. How even his ‘high-functioning’ version of autism saturated every aspect of his life, and hers.
I did indeed have a girl. I did indeed have a girl with autism. We beat the odds. Six years later, I still struggle to say anything particularly profound or coherent or insightful about this. Certainly I’ve changed because of my daughter’s autism, but presumably I would have been changed by any child; how the hell can I say what part of my evolution is due to my daughter’s autism?
My daughter’s autism. How can I separate her ‘condition’ from her self? Even as I insist on person-first language (child with autism vs. autistic child), I can’t separate one from the other. We are our deeds, said Sartre. We are our disabilities, our abilities, our negotiation between the two. I can’t do math: would I, the child of a famous scientist, have ever even remotely considered becoming a writer if I hadn’t been so profoundly algebra-deficient?
I didn’t plan on autism, and I didn’t plan on this love. This love: it isn’t like your love for your cat times ten, or your love for your partner minus the sex. It’s an utterly different equation—the magnitude, texture, shape of it. It’s a different beast, this love. I’m still me, still entirely lacking in nobility (don’t worry, exes, you’re not missing out on anything), but I am this love: veiny, rooted, deep.
I’m still other things: a writer, a teacher, a learner, a yearner, a bad rhymer. But I’ve been broken by autism. Rent in two, doubled: I’m me still, but I’m her, a part of her and her purple and black world. I’m certainly broke because of autism. I may be bad at math, but even I can discern that my daughter’s expenses are roughly twice my salary. Everyone loves to talk about the supposed heroism of disabled people and their parents; what everyone doesn’t love to talk about are the material needs that come along with this ‘heroic’ condition.
And you know what? It’s awful (the being broke part). And it’s awesome. It’s touched every dimension of my life with gold, with shit, with love. I have more to say, to make, to illuminate than ever—as an artist, writer, and parent. I don’t know if I would have become obsessed with parenting as theme and form if I hadn’t had a child with autism. If I hadn’t become an ‘autism mom’. Ugh. How I loathe that term. It conjures a frazzled white lady in mom jeans and a sippy cup, looking even more woebegone than her trusty sidekick, Soccer Mom.
Hell, as Jean Paul didn’t say to Simone, is other people’s ideas about autism. (I’m on a Sartre kick: can you tell?) What I’m struggling towards, trying to bring the rest of the world with me, is a notion of disability that acknowledges the difficult parts without contracting everything about a person, a child, my daughter, down to those difficulties. Which doesn’t replace their personhood, their hilarious specificity, otters and all, with this weird and scary label. This is the problem of all minority identities, right? As a queerJewishpartnerofanAsianwomanmother ofbiracialchild, I should know. Yet somehow it’s still okay to say ‘at least my kid is okay’ (read: not disabled, not damaged goods) by people who would never say ‘at least my kid isn’t gay’. That’s how I thought, in all honesty, before becoming privileged to be my daughter’s mother. Yes, privileged. I hate when people say, “She is so lucky to have you.” Nope. I’m so incredibly lucky to have her. My luck. My joy. My daughter: my sweet shining girl, my naughty elf. Her boundless, spirit. Her joyful quiet.
I’ve discovered that silence is its own sort of language. I know, this is not a particularly original thought, but I’m living it in a pretty intense way. Daily. Hourly. Dreamily. I spend so many hours in silence. My body cuddling hers, chasing hers, tickling hers. Languageless, languid. It feels deeper, calmer, and yes, smarter, this rich soundless dialogue. It certainly looks profoundly different from the ‘neurotypical’ patter between a six-year-old girl and her mother.
But this love is not heroic or ennobling. In fact, there’s nothing I hate more than when I’m told what a hero! what a martyr!! what a great mom!!! I am. My daughter did not make me into any of those things, those cretinous, dehumanizing concepts that stand in for the speaker’s unspoken pity. Don’t you fucking pity me. Don’t you dare pity my daughter. We are brilliant. We are illuminated by our mutual manifold conditions, which include but are not limited to autism.
So, dear pregnant person: do not fear disability. It will illuminate you. With the shit and glory of love. We can’t separate one from the other. It’s a giant ball of gold-shit.
It’s expensive. It’s expansive. It’s vital.