Sunday, January 31, 2010

Is this exploitation?

A blogger I love posted a video of her autistic daughter asking to buy a toy, because she was proud of how her daughter's language and communication skills and connection to the world had blossomed, and she wanted to share the cuteness.  Most of the comments under this post were very positive - yay kid!  Yay progress!  How many toys did you get suckered into buying?

But then there were a couple of lengthy comments from "Molly," a woman who identified herself as "a person who has grown up with health and disability issues" who took offense at the whole concept of disability mommy blogs - or as she called them, "About Child, but FOR Mommy bloggers."  Her argument was that she would be "mortified" to discover that all her childhood struggles had been shared with the world, and that making the choice to put a child's image and personal information on the internet is unfair to him.  She writes,

I can't imagine how violated I would feel today if I knew my mom had posted information about my difficulties with math or socializing or my medical appointments or embarrassing ballet recitals. Anyone who would do such a thing to a child is SELFISH. How dare you make your child's issues public. You mothers out there who post such vile things are primarily interested in your own experiences with your child.
My initial impulse was defensive - to dismiss Molly as bitter and reactionary and excessive.  But upon reflection, there's certainly some merit to her argument.

It has certainly not been my intention to humiliate my child, in the present or future.  I have made minimal effort to disguise who we are - I don't post our last name or where we live, but do use real first names and photos.  My goals with this blog have been predominantly selfish 1) to encourage myself to write more frequently; 2) to deal with my feelings about raising an autistic child; and 3) to put a positive, human face on PDD so that my son may grow up in a more understanding, more compassionate environment.  I've been pretty open about the fact that the blog is as much about my own personal growth as it is about my son or his accomplishments.

But yeah, someday he will be able to read, and he may read this blog and be mortified, or his peers might somehow find out about this blog and read it and tease him because of it.  And I should not be quick to dismiss the potential impact of that.  The internet creates a permanent record of everything ever uploaded, so even if I were to erase this blog today, traces of it would probably remain out there for digital eternity.  I could speak with everyone I meet about my son's struggles and achievements and leave no permanent record of those conversations, but when he is a teenager, or an adult, my writing about his childhood will still be available to him and to anyone he meets.

I believe he should feel no shame for being himself, but am I denying him the ability to make choices in the future about what he reveals or does not reveal about himself?  When he's 12, will he be whining that I've embarrassed him and ruined his life?  (Well, yeah, he will.  There's no getting around that, blog or no blog.)

So I ask you: is this blog exploitative?  Should I anonymize him/us?  Is there more benefit than harm in sharing the details of one family's life on the spectrum?  At what point will he be too old for me to be talking about him like this?


  1. FYI -- I noticed that you "anonymized" Mike, but if you get the blog in an RSS feed as I do his real name still shows up.

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Keep it civil, people.