:: 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.
I write a lot about how my experience as a disabled person has made me a better mother to disabled children—in a variety of ways. Here, though, I want to point out one way in particular.
I know how important it is to protect my kids’ privacy. Now, this might sound strange coming from a person who writes about her kids, but if you read my writing, then you know I work very hard to protect my kids’ privacy. I even wrote about how to write about your kids. [link]
I also work very hard protecting my kids privacy in other ways. I rarely publish their photos, and when I do, I never show their faces. I never use their names. I don’t mention where they go to school. I don’t sign consent forms at schools or camps for them to use their photos. My kids do not exist on the internet if you do a search.
But privacy didn’t matter to Spokesmom. She didn’t message me because she wanted to have a discussion with me about the merits of disability disclosure. She wanted a pretext to give me parenting advice. Which came shortly after my reply.
So, I volunteer to teach kids with invisible disabilities in my Sunday school class. One thing I really value is parent input—not about specifics of diagnoses, but redirection techniques that are effective, what are signs of true distress and what is part of the “feeling you out” routine. … If that isn’t something you do routinely, it may help your kiddos’ coaches become more successful in bringing them into the activity.
My words to her: “I don’t have much to contribute.” My words: “What are we trading?” My words: “We give over something of our kids they didn’t ask us to give.”
My words: Think about the children. The children are people. They are people.
But her message to me ignored my words about the bargain, the trade. Her message was about herself, and what she needs. About what adults need, ignoring children and what they need. Her message was also, in the end, about what normates need.
So frequently there’s this idea that if disabled people keep the normates happy, then the normates will keep disabled people happy. And yet disabled people know that this isn’t true.
Spokesmom said she didn’t need a diagnosis, just “parent input.” She’s a “volunteer,” she said, who works with “kids with invisible disabilities.” All she wanted was for parents to advise her about their disabled children.
That’s not so bad, right?
Then Spokesmom gave me advice, the advice I never wanted, that still, all this time later, makes me angry: She told me I should do the same kind of advising—”routinely”—with the many people who interact with my kids, if I want those many people to be more “successful” when working with my kids.
But in her advice to me, Spokesmom overlooked one important detail, a detail that I, as a disabled person, would never overlook.
In order to advise the coaches, counselors, and myriad others who interact with my children about, say, “redirection techniques,” I would have to disclose to all of those people that my children are disabled in the first place.
If I had shared my kid’s disability, or literally anything about him, with that swim coach the year he was kicked off the team, here’s what would have happened: he would have been kicked off of the swim team. But they would have been patronizing when they did it, instead of mean.
And I would have violated my child’s privacy with a group of transient, teenaged strangers for no reason at all.
One of the reasons that I protect my kids privacy so fiercely both online and off is because I know how agonizing it is to share information about myself. Because I am disabled, I know what disclosure feels like.
Every time I disclose it is agony. Disclosing has gotten easier; after all, I talk about it on the Internet, and I wrote about it in my book. [link]
But when I had that conversation with my college acquaintance about the concert, even with somebody I know is open-minded, I was embarrassed. I’m always embarrassed, or uncomfortable, something, and I am old and experienced.
It is not my job to decide for my kids that they have to go through that. I will disclose my kids’ disabilities when the law says I must. I will not do so otherwise. The title of the essay the woman messaged me about says that the world does not bend for disabled kids. I want to change that. Part of changing the world means that my kids do not have to yield their privacy for other people’s comfort.
For the comfort of a summer swim coach, for the comfort of a Sunday school teacher, or for the comfort of a piano teacher.
My kids don’t have to give up a piece of themselves to make other (normate) people feel better. And if you are the parent of a disabled kid broadcasting your kids’ disability to random people you might not see again, maybe you should rethink that for the sake of your children.
You might not know what having that information spread around feels like, but I do. And it hurts.
I know two true things.
First, everyone has opinions about parenting.
Second, everyone has deep-seated animosity toward disabled people—even toward disabled kids. That’s called ableism, and everyone has it. Including me. It’s one of those things that is so built in to our culture that unless you fight against it every day, you are it’s handmaiden. Most people don’t fight against it every day.
Therefore, some people say really nasty things to me when I write about myself and my kids.
They tell me that my kids are just troublemakers, and I’m making excuses for them.
They tell me that I’m a terrible mother.
They tell me that my children need more discipline, and I’m doing it wrong.
They tell me that I expect the world to bend too much, I’m asking too much, I’m asking for special treatment, I’m too demanding of others, normal kids aren’t such a problem, why should I expect extra for mine?
When you write about parenting on the internet, you get parenting advice from strangers on the internet. They go together like crackers and cheese.
Spokesmom’s message was not the first time I was told that if I expect coaches, camp counselors, care providers, and parents at the park to be sympathetic to my disabled kids, then I need to share my disabled kids’ private medical information with with these people.
But my disabled kids are not disability activists. I’ll share their information when I must, but no more than that. I shared their diagnoses at their school IEP meetings, because in school, I’m required to share my kids’ medical diagnoses.
Otherwise, I’ll protect their privacy. I know what it’s like to be a disability activist—I am one. I made a conscious choice on a particular day in a particular year to step into this world of activism. I live in a place where everyone knows my name, and my face, and all about my bipolar disorder, anxiety, and everything else I’ve written about.
I made a choice.
Sharing that information about myself has created a burden. I won’t force that burden on my children, not unless the law makes me.
At the park, when a kid throws mulch in my son’s face, I teach my son to walk away from the other kid. I don’t wonder whether the kid has a disability. It doesn’t matter. What matters is that all kids are different, all kids are amazing, all kids have good days and bad days, and all kids need our care—if you choose to be around children.
If you don’t choose to be around children, I get that too. Really.
But if you choose to work at a kids’ camp, or on a tennis team, or in a school, or at a park, you will encounter children in their beautiful multifariousness. But—if you spend your time looking for “problem children,” I have a secret to share with you. You will find them. One of them, likely, will be mine. Decades ago, one of the problem children would have been me.
The source of the problem, though, will be you.
Yesterday morning, my younger son Eight was at a swim lesson with a coach whom we adore, Swim Guy, a rising sophomore in college. We picked Swim Guy because he’s really great with our kids.
These days, “really great with our kids” is our only qualification for the people we hire to be around our family.
After Eight’s lesson I asked the coach, in private, to review the lesson with me. Swim Guy said, “We could have gotten more done, but Eight is really distractible.”
I hate that word, “distractible,” especially when used by teenagers to describe my kids. Teenagers think they know what it means, but they have no idea what it means. But I’ve learned not to get angry when non-doctors throw around diagnostic terminology. If I did, I would be angry all of the time.
And I don’t want to get angry at Swim Guy. I know he means well. In fact, I think he’s using the word “distractible” because he thinks it’s a Grown Up Word that he’s supposed to use to talk about kids like mine. I’ve heard camp counselors and coaches and tutors use it before when they’re trying to sound like they know things about disabilities.
It’s all right. He means well.
So I replied, “It’s true, Eight is highly intelligent and interested in a lot of things.”
Swim Guy, the really smart, really good-natured coach, paused. He thought about my words for a moment, and then he said, “You’re right. Eight is so smart.” He paused again, still thinking. “He is so smart.” I watched him tumble the words over in his mind.
And then we said good-bye and that we’d see each other tomorrow.
This morning, I sat on a lounge chair and watched the lesson. Swim Guy worked with Eight on getting Eight’s flutter kick just right.
Swim Guy walked backwards, letting Eight chase him with the kickboard. The entire time, Eight talked and talked, about plasma, and radiation, and the earth’s magnetic core, and Did you know that rail guns are giant electromagnets and work kind of like monorails? And every time Eight shared some new knowledge, Swim Guy said, Wow, no, I didn’t know that. And it’s likely he didn’t, because honestly, who does?
And back and forth they went across the pool, Eight kicking as hard as he could, and Swim Guy walking backwards, listening to Eight with honesty and heart, and maybe a small portion of love.
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