:: Part of changing the world means that my kids do not have to yield their privacy for other people’s comfort.
A while back, I wrote an essay for the magazine Catapult that told a story about how my younger son struggled with the swim team, eventually being kicked off the swim team because of his disability.
In the essay, “The World Doesn’t Bend for Disabled Kids (or Disabled Parents),” I also talked about all of the things I’d been kicked off of as a kid for being different. The essay connected our stories, his and mine, creating a mosaic of past and present, and hopefully, a brighter future. [link]
The essay was, at its heart, about being the disabled parent of a disabled child. In it, I talked about what a difference it makes being disabled myself and going through similar things that my child is going through—now, and when I was a kid.
“The World Doesn’t Bend” ended up being shared across many platforms, and it received a lot of positive response. I was grateful. But there was one thing I did not expect—although in retrospect I should have. I received parenting advice, so much parenting advice, after publishing the essay. Of course I did—I wrote an essay about parenting and published it on the internet.
And if you talk about parenting, breathe even a word about parenting, then everyone feels entitled to tell you what you’re doing wrong.
But when you mix together parenting and disability, you light a very particular fire.
My piece was shared in some Facebook parenting groups, including one group (at least one) for moms of disabled kids. One member of that group, a stranger whom I’ll call Spokesmom, sent me an unsolicited private message via social media, asking me this question:
A discussion [is] going on from your post about the world not accommodating kids and parents with SNs. I read into the article that you debriefed the coach in private lessons about your child’s SN and effective communication strategies with him. Other moms are reading into it that a good coach would just know what to do and you hadn’t communicated any special information about your son. It is now the critical point in the discussion, so I told them I’d PM you and get some clarification.
I can’t even begin to tell you all of the things that disturbed me about Spokesmom’s message, but I’ll try.
(1) A complete stranger on the internet sent me a direct message to ask me about how I talked to my swim coach about my “SN” [her word, not mine, short for to “special needs”] child, as though I would share that information with her, a complete stranger on the internet, so that she could turn around and share it with her Facebook group.
(2) A complete stranger on the internet has come to me, an author, to settle a debate about my literary essay because they have “read into it” different things. This is not an unusual thing for readers to do to authors, but friends, it is always weird.
(3) A complete stranger on the internet implied to me that she believed I “debriefed” my kid’s summer swim coach about my kid’s disability. And that I should have.
The third one bothered me the most.
First, let me say this. I understand how hard it is to be a mom of disabled kids. I am one.
But I am also a disabled person. And I do not tell every person I interact with the ways that I am different so that they know how to interact with me.
Doing so would be embarrassing and weird.
Late at night, on the phone, an old acquaintance from college asks me to go to a concert with him. I don’t want to go, but I’m hesitant to say no. I don’t want to hurt his feelings.
I say, “If Stevie Ray Vaughan comes back from the dead, I’ll go see him in concert. Otherwise I can’t go.”
“Why not?” he says.
I hesitate, trying to say something that will close down the conversation without revealing too much. “I don’t do well at concerts.”
He says, “This guy is the closest living thing to Stevie Ray Vaughan. You’ll love it.”
He hasn’t heard what I said: I can’t go to concerts.
And so I face a choice, a choice every person with an invisible disability faces—whether to disclose. I run the variables: I trust him, mostly. I believe he will not be judgmental, mostly. But still, the question persists. Do I want to share this part of me with him?
I feel backed into a corner by his persistence. And so I choose to disclose. I explain that I can’t go to concerts because I have anxiety disorder and PTSD. I’ll be miserable all night and then worse than miserable the next day. The next day I’ll be useless, like I have a hangover, having spent the night before hyper-vigilant and strung out on stress hormones. The next day, I’ll trudge around the house with my eyelids at half-mast, feeling photo-sensitive, likely with a migraine.
Telling these things to an acquaintance is strangely intimate and frankly awful. It’s a lot easier to write about it on the internet.
When I write an essay, I don’t have to sit in awkward silence while I wait for you to come up with an appropriate response to what I’ve told you, and then watch you fail.
When, once again, another parent of a disabled child has felt it was okay text me—a complete stranger—to ask whether I “debrief” every adult who passes through my child’s life about my child’s disability, whether I tell the many swim coaches or tennis coaches, the many interchangeable teenagers who will come and go in any given summer, the first thing I felt was sadness, that my essay couldn’t have just stood on its own, and sadness that someone could reach into my life via a messaging software and insert herself into my life in this way.
I considered not replying to Spokesmom at all. In retrospect, I should have not replied at all.
Instead, I replied politely, but dodged the question, trying to nudge Spokesmom in the right direction:
I’m not sure my contribution here would add much to this discussion really. It sounds like it’s a good discussion to have—what are we trading when we have talks like that with a summer swim coach. This isn’t school where we’re required to hand over testing records. It’s community swim. When we do say, “my kids is disabled, do this,” we give over something of our kids they didn’t ask us to give.
I refused to answer the question she asked me directly. I posed a question instead: What are we trading?
I had hoped that my question would cause Spokesmom to think about why I don’t tell every summer teenager about my kids’ disabilities. Why guarding my kids’ privacy might be important. Why disclosing stigmatized invisible disabilities when it is not necessary might be a bad thing.
But I didn’t realize something when I entered this conversation with her: Spokesmom didn’t want to have a discussion about disability activism or disability politics, or about privacy concerns.
She wanted to give me parenting advice.
We’d entered a realm that I hadn’t been prepared for. Moms telling other moms what to do is basically the Thunderdome of the internet.
After I replied, Spokesmom gave me unsolicited parenting advice. That’s when I got angry.
Readers: do not give unsolicited parenting advice to strangers on the Internet. I don’t mean to people with whom you are in a parenting group on Facebook. I mean to people who are strangers. Especially if that person has just written and published a soul-bearing article for a magazine about her parenting. That’s probably a terrible time to give that person parenting advice on the Internet.
If you’ve read this essay before, you might have noticed that it is shorter now than when I first published it. That’s because I’m writing a book about being a disabled mom of disabled kids, and in that book I take some ideas that were here and really expand on them and rethink them. Leaving them here, now that I’ve grown in my understanding, wasn’t right for me or for you to leave these old ideas here.
Thank you for being a loyal reader, and I hope what I’ve left behind can help you still.
If you enjoyed this piece, you will enjoy my book, LIFE OF THE MIND INTERRUPTED: ESSAYS ON MENTAL HEALTH AND DISABILITY IN HIGHER EDUCATION, available at lifeofthemindinterrupted.com. Buying my books is a great way to support the online writing that I do for free.