consent

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{image is a photo of Brooke hiding under a big, floppy hat, taken and shared with her permission, as always}

To parent in the digital age is to walk a wholly uncharted path. We can’t turn to our own childhoods to see how our parents chose to navigate the issues we face. We have nothing but our own instincts to guide us.

That said, it’s not always easy to walk on the right side of appropriate boundaries. It can be extremely challenging to discern the line between sharing our own lives as parents and exposing our children’s lives without the truly informed consent that no child can, in reality, possibly provide. Believe me, I know. As a blogger I wrestle with it every day when I ask my children if it’s okay to share their photos and stories knowing full well that they can’t really comprehend (as if any of us can) the enormity or the potential ramifications of the digital footprints we are creating.

So I do my best to honor them as I would want to be honored. To protect them as I would hope to be protected.

You might notice that when I’m asked about how Brooke is experiencing puberty vis-a-vis autism, I don’t answer. Want to know why? Because if she were a typical kid there’s not a chance in hell that I would be talking about how she’s experiencing puberty. Can you imagine what it would be like to be a child whose mom was not just telling her friends, but publicly, in a forum with an infinite memory, recording the most personal, most vulnerable, most awkward and embarrassing stuff of your childhood?

Our children’s privacy matters. Whether they understand what a blog is or not. Whether they have shown us evidence (that we can see) that they can read or not. Whether they can speak or not. Whether they are able to feed or toilet independently or dress themselves or not. None of those factor into whether or not our children deserve respect.

Human beings have a right, among thousand of others, to privacy. That’s not something that any disability, in any form nor level of severity, can ever negate.

Stepping off my soapbox now. Thanks for listening.

~ Diary’s Facebook status last night

 

As I assume that most of y’all know by now, I only post photos of my girls here with their permission. That said, I fully acknowledge, as I did in last night’s post, that truly informed consent is not really possible for any child to give as it’s nearly impossible for any of us, no less a child growing up in the digital age, to conceive of the enormity of the potential ramifications of the digital footprints we create.

That said, as most of you also know, I don’t use the girls real names. Although I am well aware that we are hardly in hiding here, I believe that their pseudonyms do offer some measure of protection and at least help to create some separation between their real names and their images and stories online. In other words, if a future employer were to Google one of my girls’ names, they would come up dry, unless or until she makes the choice someday to blow her own cover.

Now, all of that said, many of you have asked me if Brooke has ever refused to allow me to post a picture of her. I’ve said before that she offers consent pretty readily while her sister tends to be a bit more fickle (which is why you see so much more of Brooke than Katie here). While Katie is currently in a “Post what you want without asking me each time, just please don’t embarrass me” phase again, that’s subject to change as quickly as the weather in New England.

In any case, the answer to whether or not Brooke has withheld her consent is not really and yes, completely. Bear with me; it’ll make sense, I promise.

You see, once Brooke allows me to *take* her picture, she also agrees to let me share it with you. However, she has VERY strong opinions about when she wants to be photographed and when she doesn’t, and even stronger ones about when she is willing to be captured on video and when she’s not. Once, many years ago, I heard her in her room singing. I found it irresistibly adorable, so I snuck into through her bathroom, and, hiding around the corner, took a video of her on my phone. She caught me, and I giggled, thinking that I’d been busted in what would feel to her like a harmless, even sweet, Mama moment.

It was nothing of the sort. She cried. And screamed. And cried some more. She may not have had the words to tell me then, but it couldn’t have been clearer that covertly recording her was a HUGE betrayal of her trust. I promised her that day that I would never do it again, and I haven’t. And I now almost always ask her before I take a picture as well. If she says yes, then she also says yes when I ask if I can share it. I still ask just in case rather than assuming. She has every right to break the pattern or change her mind.

So that’s my very long answer to your very short question – Does Brooke ever refuse to allow me to post a photo of her? Not really … and yes, completely. As you do.

 

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13 thoughts on “consent

  1. I do share photos of Baguette via my personal Facebook account, but none of the pictures on my blog show her entire face–and her name is not really Baguette, just as mine is not really Tragic Sandwich. (I know, you’re shocked!)

  2. I love this post, I too collaborate with my children and when pictures are involved obtain their consent. You are teaching them to make decisions, expect respect and to work with others. Bravo!

  3. I have only really had the experience of posting about (mostly) my own life as a person on the autism spectrum. I do mention others, not always giving them pseudonyms (for most people I’ve already used their real name so giving them a pseudonym would be virtually impossible), and try as well as I can to keep the portrayals of people positive and innocuous. Never-the-less, given all writer’s instincts and tendencies, you may read my blogs and get the strong sense that I’ve hinted at something, which is what any great writer would do. I know that I have a goal in mind as I right my blogs, as all autism advocate bloggers do, and I do believe in the future, Brooke may understand what you are trying to achieve, something hard for any child to understand. Yet being a college student, I am surrounded by people who are sometimes understanding, sometimes extremely immature, and many times extremely vulnerable. Try as I might, I can’t write a story without delving into the actions and behaviors of other people. I do not always say everything, though I certainly do not lie, and I certainly don’t pretend nothing ever happens. It does. For me, autism blogging has been a means to an end, full of complexities to consider.

  4. I am not sure if this is the appropriate place for me to comment, but I have been following you on you Diary FB page for a while now. I was really inspired by a comment Conner replied with last night on a post, and realized that there are two things I would really love to gift to your family. Well one is a total Mom gift, but the other is an absolute family gift.
    If you are interested I would love to tell you what I was thinking and if it’s not right for your family then I totally understand.
    With Best Regards,
    Deva

    • deva, thank you so very much for your generous offer. i trust that you wouldn’t send anything ticking :), but nonetheless, i very gratefully and respectfully decline. i’d be truly honored if you’d think about donating whatever it might have been to a local shelter or children’s hospital. that would be the greatest gift we could possibly receive. thank you so much again!

    • dear god, i just made the mistake of reading some of the comments on the post to which you linked (which i know wasn’t even the one where you felt the need to leave the comment.) i had to walk away.

  5. Okay I have been thinking about this. I lied. I do read the comments. Safe space or not. I have to know what my girl is up against. What others are up against. To bear witness I guess. It hurts. I know it will hurt her a billion times more. I have to prepare her somehow.  

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