The actual thing that takes up most of my time
and how to talk about it
Last week, David and I were interviewed together for an NPR show (I’ll share the link when it’s out). The host asked thoughtful questions about Unfit Parent and how we navigate parenting together as an interabled couple.
After we finished the interview, we laughed together about how we had avoided the details of a huge part of our lives: parenting an autistic kid. That night in bed, after an endless bedtime, I quipped, “Imagine if the thing that defined our days is that I can’t stand.”
David and I have a shared understanding of what’s off-limits when it comes to talking about our kids. But that means that while I work so hard to tell the truth about living in this body, I leave a lot out about living in my life.
The other day, Virginia Sole-Smith posted on IG about a book written by three moms about parenting autistic kids. I’ve read the book. And I have some feelings. And I don’t think they are just ego feelings because it came out around the same time mine did, and it was a NYT Bestseller. (Though, of course, there is a long history of things about disabled people being more palatable than things by disabled people.)
The book does something that I don’t do — it shares a lot of details about the authors’ kids. And it brings up a question I think about often. If parenting takes up most of our time/brains/energy, and we need to tell stories to survive, how do I write about our kids who are independent people who deserve consent?
A lot of parenting writing ends up flimsy and false because there is a notable absence of, well, the kids.
My policy so far has been this: I imagine K and F reading my newsletters, books, essays, and if I feel guilty, I change something. (But are the parts I’m leaving out dictated by my persistent internalized ableism? Am I deciding what they should be ashamed of?)
Books change minds, which shift, eventually, policy. Sharing details matters. We need narratives, or nothing seems real. But which families, and unconsenting children, should be sacrificed on the altar of public perception?
I’d love to hear how you all think about this, as readers and writers. I know the gnarliest stories from parenting can be a lifeline, but what do you think should be kept private? What are the risks and benefits of telling the truth about our kids?
I love this question and I think so much of what you shared in Unfit Parent helps me orient to what and how I share about it. Yes, of course, there are those moments when I just need to blow off steam with a close friend or my co-parent about something my kid is doing that is driving me crazy. But most of the time, the reason I am struggling is not because of my kid - it's because we are steeped in systems that are wildly unsupportive and do not seek to understand diverse perspectives and want to judge him (and me) instead of trying to understand what is going on. So when I share more publicly about the hard parts of parenting I try really hard to come at it from that perspective, which has actually been really helpful in reorienting my own perspective on what is going on. (I'm not terrible at parenting - I'm working really hard to parent in a very broken system.)
I'm obsessed with this question. So important! So tangly! It wasn't until I was well into my 20s that I started to piece together just how harmful my mom's narration of my childhood illness and disability was to me. It was the days before social media, but witnessing the way she'd talk about me in front of classrooms and congregations, again and again, erased my experience -- it was like I was a player in her story, not the author of my own experience. I don't think this is an uncommon dynamic between parents and children, but I do think it's made more complicated when the child is disabled as if folds into much larger societal patterns/harms. Before my son was born, whether he had (or would have) a disability, I was adamant that I would not do this. I would understand the two of us as separate, distinct beings. I would never tell his stories as my own. And also, added to the tangle is the tremendous value I see in representing disabled motherhood -- how do we tell these (needed!) stories powerfully (which, I think, means specifically) while honoring their stories/selves as distinct/autonomous? Now that my son is here, I understand how impossibly hard it is to do both of these things at the same time. My imperfect guide has been to 1) keep the spotlight on my experience as a mom/stay embodied in my own POV, 2) be super cautious with what stories I share/if I do share, choose each word carefully, and 3) describe the moments I do share without judgment or assumption about what any of it means to him. Every piece of writing that includes him feels like starting from scratch with a whole set of unique concerns. I'm not sure I'm doing it right. I will probably continue to adapt as I go. But I think the questions are important. I want to keep them in the forefront. Thank you for inviting us into the quandary. I am soaking up everyone else's responses💛