Rules for Writing about Fiona

Every few weeks I stumble across an article arguing that parents shouldn’t publicly write about their kids. Some of these articles are written by parents who once wrote about their kids but have since changed their minds. Some of these articles are written by people with disabilities who are upset with the way parents share details about their disabled kids’ lives. Often the arguments are more nuanced than I’m representing here, stating that if a parent does write about a child, the parent should follow certain rules. Use pseudonyms, for instance. Share nothing “private.”

These arguments have, on occasion, sent me into shame spirals. During these spirals, I’ve wondered if I’ve somehow transgressed in the four years that I’ve written about Fiona. Have I said too much? Should I even be writing? Is this Ollibean article correct when it states that a parent can only write about her child if the child gives the parent consent? What if Fiona can never give me her consent?

When I was a graduate student of writing, my dear mentor Lee Martin said that each nonfiction writer had to figure out for herself where to draw the ethical line. One person’s ethical line will not be another’s. One writer will use pseudonyms. Another won’t. One writer will reveal a personal detail about a relative. Another would keep that detail private. All choices might be ethical, depending on the circumstances. Lee said a version of this: “You know where your line is when you’ve crossed it.” After you’ve crossed it–after you’ve written more than you should–you hit delete.

A few years ago, I read Philippe Shils‘ poetry collection, hey hey pretty baby. The poems are about Shils’ daughter, Lucia, who has seizures and developmental delays. The whole volume is worth buying, but I’ve cherished one particular poem, rereading it at least once a year. Here’s an excerpt:

rules for writing about lu

never use the word firmament. lucia is earthbound for now. she’s all angles not angels….

don’t compare her to a cloud or a flower. don’t use the word blessed. I will exile you if you use that fucking word. her hair is red not coppery or golden. anything but golden. she’s not related to the sun. she’s not akin to light. the word ‘inspire’ inspires contempt. ‘beauty’ and ‘glow’ gets you the guillotine. tell me how unlike her parents she is….

realize that when she falls she falls from a high and awkward place. listen to her cry. she cries as though she realizes things about herself that are unwriteable. write about those things.

I love this poem so much. I love the way Shils writes against the common tendency to hero-ify or make precious the child with disabilities. I love that the poem, found about two thirds of the way through the collection, suggests that the poet all along has been thinking about how, and how not, to write about his girl. He’s aware of the weight of his words.

Where exactly are my lines? What are my rules for writing about Fiona? They exist, but I’ve never fully articulated them. And so, four years into writing this blog, and as an homage to Shils poem, here’s a partial list:

Rules for Writing about Fi

1. Don’t mention the word potty.
2. Only use the word angel when you insist she’s not one.
3. Take pause whenever you reveal something that can be found in a medical file.
4. If you must talk about scoliosis, make it mean more than asymmetrical bones.
5. If you must talk about heart anomalies, do not sentimentalize the heart.
6. Pay attention to the words of doctors. Record how those words architect your insides.
7. Pay attention to the ways you fucked up. Forgive yourself. Then write.
8. Pay attention to the gaps between what she wants to tell you and what you understand. Let those rip you open. Repent.
9. You are not her voice.
10. Her voice is a hundred vowel sounds, a thousand expressions, and two Lake Tahoe eyes.
11. Keep modeling her talker so that one day she might write a post of her own.
12. Don’t use the page to vent. Use your husband for that.
13. Remember that her teachers read this blog.
14. You can break your heart open. You’re allowed to do that.
15. Never say something that could hurt her.
16. How would you know what might hurt her? She can’t even tell you what she did at school today.
17. Know that no one will ever know how hard it is to be her parent.
18. Know that people will pretend to know, and they will have no clue.
19. But know that you can’t tell people exactly how hard it is, otherwise you’ll fuel the case for doctors who insist that lives like hers aren’t worth living.
20. Remember the history of people like her. Remember the institutions. Remember the sterilizations.
21. Remember your beloved natural doctor, that woo-woo woman you’ve seen your entire adult life. Remember how she once expressed concern that the oak trees of this world were moving on to “another realm,” but how, when you told her about your 5-month-old daughter’s condition, she said, “You can always put her in a home.”
22. You are not writing for the doctors.
23. You are not writing for the mothers.
24. You are not writing for your daughter.
25. You are writing into the space between you and your girl, the space made widest on that snowy day when she, age 3, finally left church on her own. Not in your arms, not by your hands, but in her walker. And away she went. Away she went.
26. You are writing because that space is never, will never be big enough, is never, will never be small enough.
27. Trust yourself. Trust you know what to say and what not to say. Like with the word “potty.” Don’t say that word.