My blog, but not my story to tell

I just spent the last hour going through all of my old blog posts and deleting several. Changing names and deleting details in others. Some of them I couldn't even read without cringing, so I deleted the whole thing.

This is a little hard to admit, but I have been going about things wrong. I was wrong. And now I know better, so I have to do better.

I have a daughter who has a health issue and I have disrespected her by sharing details of it here, with you all. Some of you know my daughter, and if we talk personally, that's fine for you to know them. But to throw these details out into the world unthinkingly, where anyone and everyone can read them is not fair to her. It's not fair to her now and it's not fair to future her. It's not fair for the people around her to know more about her story than she is willing to tell. Summarily, it is not my story to tell.

I have deleted all medical information and my personal opinions about her story from the blog. I have deleted her name. Why was she the only child I was willing to name in the blog? It kind of makes me sick to think of it.

Sweetie, future you... I'm sorry. I know better and now all I can do is try to be better. It's your story, not mine, and I get that now. You are entitled to your privacy just like anyone else.

This is all stemming from some information that is relatively new to me, but after much thought, makes perfect sense.

A website that I have previously published on, The Mighty, posted a satirical "Autism Bingo Card." It was supposed to poke fun at stereotypical autistic traits. If you, as a parent, had witnessed any of those things done by your autistic child, cross them off until you get a Bingo. The mom who created the card later stated that she is, herself, autistic, and she and her autistic son had collaborated on the article.

But here's what happened. A lot of autistic adults spoke up and said that it wasn't lightheartedly funny, like the author had intended. Sure, some parents of autistic children had a giggle, but the autistic community in general has railed on The Mighty for publishing it. They have since taken it down. Some of the comments made by autistic people were very angry in tone. I got to wondering why they seemed so upset, so I dug into it further.

So, The Mighty is this website supposed to be for and about disabled folks. Turns out, most of the articles are written by parents, and/or a lot of them are what is called "inspiration porn," meaning that you take a situation where an able bodied person interacts with a neurodiverse person, or disabled person, and we laud the able bodied person for being so generous as to deign to have that interaction. Isn't that sweet, we say. But we don't for one second think about the other person in that interaction. We think that they might not understand, or that they are simply so grateful to be asked to prom, or whatever, that they can't possible take offsense from the situation being thrown to the media.

But what if it was you? What if it was your kid? How would it make you feel to have society tell you that the able bodied person is so wonderful for making a spectacle of your/your child's disorder, etc? Because that's what they're really doing.

It kind of hurts to think in this way (we aren't doing this!, but yeah, actually, we are), but once you see it, you see it everywhere. We eat this shit up. But I'm starting to think of that other person in the situation, the one "with special needs." Ok, so that person talking to me was fine, I guess, but now it's gone viral? Now everyone is applauding them? Why should we take pride in someone talking to me? Shouldn't people just be kind to each other? What's wrong with me??

Then, on the other hand, you see parents (ugh, myself included), posting every intimate detail of their child's history, their struggles, their embarrassing moments, etc. Posting it out there for every Joe to see.

All the time, I see people posting on Facebook that they're so glad that Facebook wasn't around when they were growing up. So, if we recognize that there are MANY moments that we would not have chosen to display for the general public and thank God that our parents weren't able to do so, why do we not turn the tables on ourselves and think very carefully about what we post about our own children?

Then you have moms saying, "Well, I need to vent. This is hard and I need a community."

I actually agree with this one and I was anxious to hear what the autistic community had to say about it. Here's what they said, and it's perfect, "Ok yeah, we get that parenting is hard. But you do not have the right to go online and whine about it in a way that degrades your child publicly. Go grab a glass of wine and bitch to your friends in private, sweetie." (I am paraphrasing.)

Gah! Aha!

I DO NOT HAVE THE RIGHT TO SAY THINGS ABOUT MY CHILD ONLINE THAT WOULD POTENTIALLY EMBARRASS OR HURT THEM.

I remember when I was a kid, my mom had some friends over. I was upstairs in my room, but decided to peek my head out and sit on the stairs. Maybe I was coming down to get something, I don't remember. I paused there on the stairs when I heard my mom talking about me. I didn't like it. I shouted, "I can hear you, you know!" I was angry. (Sorry to share that, Mom, but it's not an experience that is unique to you, and I know that everyone does it.)

So, I didn't like it when my mom talked about me to her friends. Why am I willing to publicly give details about my family, then? Whatever good it does to me, it has the potential to do so much more harm to my children.

Another thing the autistic community filled me in on is that no one likes it when you laugh at someone else's condition (SHOCKER!). That Bingo card that a lot of parent's laughed at included some pretty scary things to experience, evidently. Things that only an autistic person can understand. It's scary stuff, sometimes, what an autistic person goes through. If we, as parents, struggle with watching it, we must understand that it is a million times harder to be the person ACTUALLY struggling.

And then we turn that around and make a mockery of it? Child had a meltdown that lasted 2 hours? Check off your Bingo sheet. Child punched a hole in the wall? Check. (I have no interest in seeing the Bingo sheet, so I am just guessing at what it said.)

Imagine the autistic individual having their own Bingo card. Would they giggle as they crossed things off? Highly unlikely. It's not funny.

In the last few weeks, I have devoured every blog I can find written by actual autistic adults. A lot of them are writing about this. Their anger, I have found, is that this stuff is STILL going on. They speak up and able bodied people "don't like their tone" or say, "You can't understand what it's like to parent a special needs child." What they are saying is, "Heck yeah, we're angry. We're trying to protect your kids here. We know what it's like and it's not cool. We've been saying this for a long time and no one is listening to us. Stop making a mockery of us. Your child's intimate details are not yours to share! And, also, no biggie or anything, but some parents have actually killed their kids out of frustration, and we don't really like that, so we're trying to nip this whole thing in the bud, and you're part of the problem here, lady." No surprise, that doesn't sit well. Parents don't like to think of themselves as part of them problem. We love our kids and would never do that. No, we're not killing them, but we're still not respecting them in the way that we would a neurotypical child.

My daughter is not even autistic, but I really think this goes so much farther than autism. I have said many times that I think there will be a real change in how we treat neurodiverse people. We are learning a lot in the medical field. We are more educated. We want more for our kids in schools, and in some cases, we are actually getting more.

But there is more work to do. And that work begins at home. Until parents can recognize their own inadequacies in forward thinking for our children (example: "they won't ever be able to read this and understand"), how the heck to we expect the neurotypical society to get it?

If we make jokes about their conditions, the things that make them them, what message are we sending? If we call our children burdens, saying we love them but hate their disorder, are we not teaching them to hate themselves? If we moan about how hard it is to parent them, how can we expect them to have self pride, or see through all of that moaning to feel real love? If we talk about how little they understand, are we not setting limitations on them? Limitations that may be implied, but are still felt.

Presuming competence begins at home, I see that now. And this time, it's not just words. Forever forward, I pledge to write with my children's eyes at the forefront, if I am speaking of them. I will not share details here that I would not say in front of them.

It may be my blog, but it's simply not my story to tell. I'm still learning.

I am thinking hard about The Mighty and watching to see what they'll do. They've also pledged to do better, but so far, it's a half-hearted attempt. It's clear that they really don't see that what they're doing is wrong. When so many of your community supports this ableism, it's hard to see through all that, to the truth: a website dedicated to disability should always have respect of the disabled community at the forefront. And when you read just a handful of their articles from the perspective of a neurodiverse person, it's clear that they don't.

I hope this starts a conversation here. I have been immersing myself in the autistic community, but I know that a lot of people who read my blog have very little knowledge of this. How do you see disability in the media, and in blogs? Have you thought about it, one way or another?