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.FullSizeRender 6
  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.walking kids
  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.



21 thoughts on “Rules for Writing about Fiona

  1. What do you have against the word “potty”? And do you mean “potty” in the toileting sense or “potty” in the “loveably eccentric” sense?

    I go two ways when talking about how hard/not hard it is. In some respects I think saying that it is hard is necessary – that until we admit that more help would be good and is often necessary then we won’t get it, or even be able to fight for it. Yes, we take the risk that arseholes like Singer will start taking a Nazi viewpoint, and we take the risk that other well meaning people will take the view that we as mothers and fathers and carers are somehow superhuman angelic beings rather than overworked and flawed humans who (like all parents) are trying to do the best by their children and are often failing in the attempt. But I still think being honest about the tiredness as well as the joy is helpful, if only so other parents realize it’s not just them feeling that way.

    Remember the institutions – yes. And by showing us parts of your daughter’s personality, her humanity, her uniqueness I hope that you and everyone else writing makes it impossible for them to reappear, makes it impossible for the community to even think of that as an option again.

    I look forward to Fiona writing her own blog or future equivalent. Even (especially?) if it starts off “Mom is SO EMBARRASSING!!” 😉

    • Thanks so much for this comment. My resistance to sharing how hard things are, that’s a work in progress. I expect it will evolve. I like your take. As for “potty,” mostly I mean (as my personal rule), “Don’t talk about the process of ‘potty-training,'” although I’m reluctant to use the word at all publicly when talking about my kids. “The 3-year-old used the potty!” for instance.

  2. Thanks to your writing I think of Fiona as a strong, spirited girl. I know that it is hard but you are proud of her. And she will be proud of you and your love.

  3. I love the way you write about not only Fiona, but yourself and your family. It is respectful and poignant . It’s in no way dramatic or voyeristic, it’s a beautiful window into your lives that you can open or shut as much as you want to.
    Thank you

  4. Thank you for sharing that. For me, one of the most challenging things as the parent of a child with extra challenges is keeping my focus, and hearing your honesty is good for me. God Bless xx

  5. Number 21, so specifically, repeatedly familiar, the extra shock of disappointment
    each time as I politely stepped away from the ground collapsing under me.

  6. I came to your blog via a friend who was an admirer of your writing and have stayed to read your posts because of your writing style, writing subjects, and profound thoughts. I am often humbled as a parent of able bodied children after reading your blog because you offer such a wonderful perspective about parenting that makes me stop and think about what I take for granted and how I can be a better parent and better person. Keep writing. Your insight on so many subjects needs to be shared. Thank you

  7. I enjoyed reading that. Are there not times when it’s appropriate to vent — about systems that are not working, or attitudes about disability we encounter, or even just our own frustration with not being exactly the parent we would want to be?

    • Hi Louise, I appreciate your perspective! I think you’re probably right… I’m just reluctant to use the Internet as a place solely to let off steam. I think a certain kind of filtered, savvy venting can be pretty effective for change.

  8. I am newer to your blog; your post on radical acceptance was posted by a friend and I am still pondering (and loving) it. I appreciated this post as well. I am married without kids but I grew up with a cousin who is about 10 years younger than me who is so beautiful; I am not sure what her exact condition is but she is mute, blind and not able to move that much, she is in a wheelchair and is very small for her age (now in her early 30s). She is so beautiful… I told her I can’t wait for heaven where we can actually talk together… I hope that does not sound sentimentalizing, for I do not mean it that way at all. My sense is that she is in there without a way to communicate that much. I always felt a connection to her as a child and now that we are adults, and I met up with her and her parents again, I found it was still there. Your daughter obviously is much more-abled bodied, etc; I am not comparing; only saying that those who have differences are still so important for our lives. I think because I am a fairly solitary person I always felt a connection to this cousin of mine. She really matters to me.

    I love your writing. I too am so sorry for #21. How shocking. Thank you for writing here. I find it a breath of fresh air and your writing itself is very worth reading.

  9. I’m not shocked about #21’s remark. Many people are quite ignorant about institutions, and alternative health people can be just as ableist and ignorant as everyone else. And many are quite romantic, too. I say that as a person with lifelong significant illness and as a person with siblings with significant disabilities. I’ve tried a lot of alternative health stuff (and I mean the woo-woo sort) for myself, and my family doesn’t use much of that anymore. We’re mostly into evidence-based scientific things. Whatever works, though. I’m so sorry this happened to you.

    • Honestly, I’ve found that people who are very committed to alternative health practices are more insensitive than most. They’ve convinced themselves that if you just gave your child the right probiotics or took him to the right CST therapist, or stopped giving him that evil formula and taking him to those evil doctors, he would be as healthy as their own child. Personally, I’m over it.

  10. Thank you, these are wonderful rules. I especially like #25. Sharing my own “space” with our 26 year old, I recall those moments…too far…too close.
    I just wanted to share a tip that might help with #16 & I found immensely helpful & joyful: a daily card. I created a card, with the help of some of my daughter’s same age “typical” peers, that each & every day went to & from school. It contained all those things I hoped to hear shared by my girl but she didn’t have the voice, words or signs. The staff that worked with her helped her fill it out, as she got older she made her own marks. What was important? Early on it was “I ate all my lunch”, “I had a poop” only because this was important to my life as Mom. Then added things like, “I played with my friend __”, then it became more important to know: “this made me laugh”… “I’ve work hard on …& finally did…”

    Keep writing, I love hearing your thoughts on all those important moments & feelings…and keep loving her deeply.

  11. Oh Heather, thank you for sharing your intentional engagement and thoughtful processing. I, too, was introduced to your writing from a friend sharing your Radical Acceptance article on Facebook. So on point and such a needed reminder. Thank you!!

  12. Hello Heather – I’ve just stumbled across your lovely blog. I have a six year old boy with a syndrome so rare that it is not diagnosed yet. I have read lots of your posts now but this one resonated as I too had the shame spiral and it made me stop writing really. I love these rules and the poem and you know what i think I might just open my blog dashboard again later this week. Fiona looks like she keeps you on your toes in a very lovely way.

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