online privacy – part a million


{Image is a photo of a single type-written word. Privacy.}

Last night, I found myself in a long conversation on Diary’s Facebook page about what it means to me to be the guardian of my daughters’ privacy. And as much as I’d like to channel Ilsa and let it go, I can’t. Because this is big for me. Really big.

For the sake of ease, I will pretend that I’m speaking here about Brooke’s privacy specifically, but only because it doesn’t seem clear to some that Brooke’s right to the protection of her privacy is, and should be, exactly the same as her sister’s. To say it plainly, disability has no effect on one’s right to be parented with respect and dignity.

I’ve made it clear in the past that there are lines that I draw when it comes to talking about my kids online and that I simply will not cross those lines. Among a lot of other things, this is some of what I’ve said (and what I posted last night on Facebook.)

I know that many of you reading this are parents of kids who face different challenges, and many of those kids are younger than mine. I know that many of you look to our story to see to what to expect as you move further down the road. Some of you have asked me to talk here about puberty, to stand by my banner of No Secrets, No Shame and to share the details of the process. To offer a guide of sorts.

As much as I want to help, I can’t.

Some time ago, Brooke’s older sister, Katie and I came to an agreement about what I would write about her here. If I don’t have the chance to ask her permission first, I am to trust my gut about what would embarrass her and what wouldn’t and, obviously, not write anything that I don’t think she would want me to share. My gut answer comes from one question … “If it were me, and I were twelve, would I want my mom telling this story to everyone I know?” The answer is, most often, no.

Brooke’s autism does not negate her right to me asking the exact same question of myself every time I sit down to write about her. My desire to talk about my challenges, my fears, my own insecurities about the process, cannot ever trump her right to privacy. Helping to guide others cannot come at the cost of her dignity.

If she chooses someday to talk about any or all of it, so be it, but she’s not in a position to make an informed decision yet. So it’s up to me to ask the question, “If it were me, and I were ten, would I want my mom telling this story to everyone I know?”

The answer, my friends, is no.

But there’s so much more to it than that, isn’t there? This whole Internet thing has made all of this pretty complicated. And I think we really, really need to take a good, hard look at how we’re handling it.

You see, blogs and Facebook pages and online discussion forums have largely replaced the coffee klatches and play date talks and living room chats of the past. This is where we do our talking: about ourselves, our kids, our pets, our lives. It’s where we bitch about our spouses and complain about, well, everything. We’ve gotten comfortable here. I’d argue that we’ve gotten a little too comfortable here. Or a lot.

Because, as much as this might feel like one, it’s not a living room and we’re not in a friend’s house. This is a public format on a digital platform with an infinite memory. And when we write here about the intimate aspects of our kids’ lives, we are sharing those details with anyone who happens upon them now or seeks them in the future – their teachers, their classmates, their classmates’ parents, the postman, the pastor, the creepy guy down the street. We are sharing the details of our children’s lives with ALL of them.

Too many times I’m told that, “it’s okay,” because the kids, especially those with disabilities,”don’t understand it,” or, “are too severely impaired to ever read it,” or “don’t have any sense of their own privacy anyway.”

Firstly, our kids show us again and again, in myriad ways, that they are taking in far more than we recognize. We have endless examples of autistic people who, once they find a method of communicating in a way that we can comprehend, are able to tell us what it’s like to live, to borrow my friend, Barb’s brilliant phrase, “disguised as a poor thinker.” Disguised as someone who doesn’t understand. Disguised as someone whose privacy doesn’t matter. (That last one was a trick. It’s not a thing. Everyone has a right to privacy and it always matters.)

Secondly, being too disabled to do something NOW does not mean that one will not be able to do it in the future. My daughter has made progress that I would never have imagined possible at another time. Literally. My little foam-stuffed head was incapable of picturing that we’d be where we are now. And I’ve learned that that means that I can’t imagine where we’ll be in five more years, or ten, or twenty either.

I have no idea what kind of advances there might be in technology – in new ways to communicate beyond anything we can currently conceptualize. I have no idea what kind of personal growth Brooke will make – what tools will open up new worlds for her. Assuming she’ll never do, well, anything, just because she can’t do it now is to do her a grave disservice.

And there is no such thing as a person who doesn’t deserve privacy. And please, please don’t tell me that our kids’ lack of discretion excuses ours on their behalf. It doesn’t. My daughter does not yet understand the need for maintaining her privacy. Does that give me a free pass to post whatever I like online? Just saying, “No,” apparently isn’t sufficient, so let’s try a game. Here’s a dramatically flawed, not-really-parallel-at-all parallel that will hopefully help shed some light on why the answer is no. (I know this is getting confusing, but bear with me, I have a plan.)

A lot of toddlers love being naked. Couldn’t care less about clothes. No modesty, no need for privacy, squat. They’re perfectly happy to hang out, limbs a-flying, nethers on display in all their glory. Which is great. Let em at it. Well, until the cable guy shows up and we send little Johnny up to get some dang pants on. Because we don’t know the cable guy. And therefore, we don’t allow our kids to be exposed in front of him.

Because it is our responsibility, as their parents, to draw that line for them when they are not yet capable of drawing it for themselves. Covering them in front of the cable guy isn’t something we do based on whether or not they will be embarrassed to be naked in front of him, but because it’s the right thing to do to keep them, and their dignity, safe. 

And so it goes with our children’s privacy online. Whether or not our kids might currently find embarrassment in us sharing photos of them half or wholly naked or talking about the details of their toileting challenges, sexual development, masturbation habits, or any other intimate topic which we would not and should not discuss with the cable guy, it’s up to us to guide them, protect them, and take extraordinary care with the indelible digital footprints that we are creating for them.

This isn’t a world that our parents had to navigate. It’s all new stuff. So we don’t tend to think of the long-term implications of social networking and blogging and commenting in online forums. But they are real and they are nearly unfathomably far-reaching. In addition to their current impact on our kids, our words await the eyes of potential employers, landlords, school personnel, and heaven knows how many others who will have sway in our kids’ lives.

The truth for me is that it doesn’t matter whether or not our kids understand those implications now. What matters is that, if we are to talk about them online, we must.

* I love cable guys, swear.



22 thoughts on “online privacy – part a million

  1. I don’t know about anyone else, but I totally get this. My son is 21 and what I share with even my friends about him is always limited. Honestly, I have always thought of Hunter as a typical kid. In my mind, he is no less than any other 21 year old and has shown me on multiple occasions that, while he may still like Disney movies and cartoons, he has many 21 year old emotions/feelings. I don’t think of him as disabled, in some respects, he just has different challenges than other kids. I don’t deal with worrying about drugs and bad influence friends. My worries are just different. “Different, not less” and therefore, should be treated and respected like a 21 year old guy.

  2. It was suggested to us recently that we have a professional help with getting our child to take showers. I want you to know that you were in my head when I was home later and told my husband that we would not be doing that. Thank you.

  3. As I said on FB last night and I will say it again here, you nailed and I like you!
    Here I will add that as a mother, sister, friend, brother, father, well simply as a human being, how can anyone not get this? We are parents, to me that means protector, advocate, and fighter for my children and ALL of their rights and privileges ALWAYS. I have to do for them what they can’t do until they learn to do it, I do it with them for as long as they “need” me to, and even if they’re adults as mine are now, I still protect, advocate and fight for them, it is my honor to get to do so because I’m mom, dad, sister, brother and well simply because I love them.
    Thank you for saying this but sorry you had spell it.

  4. It’s simple – if it were me, in this moment, would I want someone to put it on the internet? But even then, I can ask and give myself permission – which those most often filmed can’t, so it’s not even an apples to apples comparison.

    The excuses I see most often is “people need to see ‘this side’ of autism…”, “it will help someone else…”, etc. But it’s their actual children, with their actual names and faces, in their most vulnerable moments. We blur out faces and don’t release the names of criminals on video, or strangers in video – why is it “ok” to violate the privacy of children in the name of so-called “education”? I just don’t get it. Where is the respect?

  5. So once again you nail this very serious topic and at the same time manage to make me laugh out loud with your *I love cable guys comment.

  6. I think you are a million percent right. I also think that some of your readers will then feel that you aren’t giving them the support that they need, that you gave them in the earlier years. Which is also right; you can’t. But that is, as you made clear, overshadowed by Brooke’s right to have real privacy. Brooke and her privacy are more important than ‘we’ are. Again, as it should be–if you had to choose between this blog and your daughter, I would darned well hope that would be a simple choice!

    What WOULD be a great service to your readers, though, would be links to those of your autistic adult friends who can choose whether or not to speak for themselves, and who might have ideas and thoughts that can help us help our teens navigate this part of their lives. You have access to these people in ways most of us don’t; that would be a great service, I think.

  7. Also, I hope that her plagiarism is a one-time lapse and not a red flag that she’s a con artist. She has set up a “charity” and is asking for donations. Perhaps you know someone who can check her out?

  8. I completely agree. For example, I don’t write about toilet training on my blog. Yes, every child does it. Yes, it’s a universal experience. No, it’s not shameful. But I think it is private.

    And I think there’s another aspect that people often miss. Let’s say, for the sake of argument, that Baguette never learns to read (I have no reason to believe this will be true, but suppose it is). Does that mean none of her peers will?

    I don’t want them to come across my blog, easily put two and two together, and decide that now they have things to tease her about. And my blog has a lot less traffic than yours. My solution is to use pseudonyms, to avoid photos that show her full face, and to avoid topics that seem too personal from her perspective.

    And how hard is that, really?

  9. Great article. It brings to mind an article I read recently by an autistic adult who talked about how sad it made him to read what parents are writing about their kids. That they were problems and how difficult they made life. He worried that he also made his families life difficult just by being who he is.

    While I know that none of us intend for that to be the perception, it is worth remembering that whatever we put out on the internet is there for life and we don’t know who will end up reading it.

  10. So, case: What if the autistic person is late-teens, communicates with a device, mostly only in the last few years. Many many videos of self injury and meltdowns posted. I raised concern, parent is awesome, truly, I adore this woman. She asked the teen, and she explained in a clear-to-him way that many other people could also see those videos, see him SI, etc. He independently answered (she did not guide him to a response) that it was okay to post, for others to see. She is not positive he truly understands social media. He is much much more capable than anyone thought but does have significant limitations in some ways. He will walk around naked at home. So, do we presume competence as in, he says yes, so it’s yes? Or do we presume competence as in, he deserves privacy that an NT kid would want even if he says he is comfortable?

    I really hope I remember to come see your answer!

  11. What a great read! I teach middle schoolers about protecting the digital footprints but as parents we are just as responsible for helping them develop a positive one.

  12. Pingback: What to share? That is the question….. | Taking it a Step at a Time - Autism

  13. Jess, I am writing a paper for class about privacy on social medias and if privacy is even really a thing that exists online at this day and age. I would love to reference this article in my section that will lay out solutions on how society can be more private about things and protect their children especially. I will of course site the article in my references page but I wanted to make sure this was okay with you? Also if you, or anyone reading this has any more suggestions I would love to hear them! (: Thanks!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s