But what I wholeheartedly want to talk about is our children, and what we say about them. I have before written a piece about why it’s a terrible thing to post an autistic person’s photo online, with information that they are autistic, without their consent. I wholeheartedly believe this to be true. Oftentimes, we don’t think it’s a big deal, as long as we don’t put their real names, or we do, but they’re just a kid, so it doesn’t matter, right?
Unfortunately, that is not the case. We live in a technology age. When I was a child in the late 80s and early 90s, access to computers was a lot more limited than it is now. I didn’t have internet access at home until I was in high school. So the possibility of my parents, my grandparents, aunts, uncles, siblings, etc. writing a piece about how much trouble I was, well, it wasn’t something that was even feasible to have been done. But every time I see a story or a post about how difficult it is to have an autistic sibling/child/friend, I cringe a little when I see a photo attached.
I’m not saying not to share those stories. But there is a point where publicly available information can harm people. Let’s talk about the woman who was denied insurance benefits for looking too happy on Facebook. It is one thing to share your own story and face unfair consequences. It’s another thing to share someone else’s. Please note that sharing your experience with an autistic person in your life (or any person, really, but specifically someone who has a disability) affects not only you, but them as well.
We live in a culture where there’s this phenomenon of mommy bloggers, and goodness, I’m one. I share information about my children, and when my children were very young, I was a bit less careful about concealing all of their information. But now, it’s different. I don’t share my kids’ photos very often, and most of the time, their faces are blurred or obscured in some way. There’s no identifying information about them in my blog except that my older child is female and she is six and my younger child is male is he is five. I’m sure I’ve mentioned the exact date of their birthdates somewhere, and I do talk about the fact that they are autistic. Otherwise, there’s little revealed. That isn’t because I think I’m superior to other mothers. It’s that I am careful, because I don’t want the world to take something I’ve said about them and use it to discriminate against them.
I keep thinking of this child, “Michael” from Liza Long’s blog, and how at thirteen, his mother has basically called him a monster. People have called her “brave” for speaking out. Other people have been appalled at her words (I tend toward the latter). Few people have seemed to care a bit about Michael himself. What will happen when he leaves the institution where he’s currently residing? His mother has said that he authorized the telling of his story, but somehow, I doubt that. I wonder if he knows that his photo and pseudonym (with his mother’s REAL name) has been released and that he’s been likened to mass murderers. I can’t fathom what that is doing to him if he does know. My self- esteem was affected in childhood by being treated as though I was a problem to be fixed rather than to be accepted as I am. I had it mild, though, I really did. A few supplements, some whackadoodle biomedical rewiring of the brain ridiculous therapy for three years and that was it. And that affected me for years. I never grew up thinking that people thought that I was going to murder a bunch of people, that I was dangerous, violent. How in the world would it be to grow up like that? Would I still be afraid of that now, at age 31, had I grown up thinking it was true? Probably.
How we talk about our children matters, especially on the internet. Feel free to vent your little heart out, but if you can, do it as privately as you can, with other parents, in a less public place (private Facebook groups or message boards tend to be the best choice, I think). Use pseudonyms. Don’t use their photograph AND their real name. Think about the message you’re sending before you hit “publish” or “send”.