Censorship in the Name of Privacy

Why parents should keep writing, even if their disabled children can't consent.

Posted Jan 13, 2016

Last month, as everyone remotely connected to the disability community already knows, the website The Mighty ignited a firestorm of controversy after publishing a post called “Meltdown Bingo.”

I haven’t read the post, and I’ve only ever read a couple of articles on The Mighty, so I can’t speak about that incident specifically or the merits (or lack thereof) of the site in general. It’s the sentiment expressed in the aftermath of this episode that I find so troubling.

In an attempt to protect the privacy and dignity of the disabled, several advocates have crafted guidelines they would like to see followed by all parents writing about their disabled children, on The Mighty and elsewhere. The website Ollibean has a set of questions, including “Did the child give their permission?” that must all be answered in the affirmative before publication.

I think that if your child is capable of giving permission—of understanding what’s been written about him or her and the breadth and permanence of the Internet—then yes, you should ask first.

But what if, like my son, he isn’t? What if that’s kind of the point?

This issue didn’t start with “Meltdown Bingo,” and it won’t end with the post’s retraction. I experienced it in full force after publishing Facebook excerpts of parents with severely autistic children in September. Even though I had the parents’ permission,  several autistic adults left comments condemning the parents for “demonizing” autism by exposing their children’s “most vulnerable moments” and “violating their privacy” just to “garner attention for themselves.”

And those excerpts were anonymous! I can only imagine what those commenters would have to say about my writing about Jonah (although something tells me I’m about to find out).

I didn’t always write about my autistic son. My background is in fiction writing, actually. But I started writing about Jonah and other kids like him precisely because those with severe autism and other intellectual and developmental disabilities can’t speak for themselves. They can’t write about why they hit themselves in the head hard enough to detach their own retinas, how they finally toilet trained after 12 years in diapers, or where they would most like to live when they grow up.

Jonah doesn’t even know what it means to grow up. He is incapable of understanding such abstract concepts. He just turned 17 last week, but we have to remind him. He still always says 14 when we ask how old he is.

So, Ollibean, I can’t ask Jonah for permission to write about him. But as his mother and lifetime guardian, I act always with his best interests in mind. And that involves – among many, many other decisions—weighing the costs and benefits of disclosing personal details about him.

I see very few costs. Jonah doesn’t know the internet exists as anything but a portal for Sesame Street videos. If he somehow knew, I doubt he would mind, since he doesn’t feel shame or embarrassment. I admit I use a different calculus with my typical kids, precisely because they do feel those emotions, and because they could face real consequences if in the future, admissions officers or potential employers or dates were to Google them.

Since Jonah will never go to college, seek competitive employment, or get married, these concerns don’t apply to him.

Again, the point.

The benefits, however, are manifold. All parents who write about their severely autistic children contribute to thriving conversations about treatments, services and accommodations. We create loci of connection for families who have previously been completely isolated. Most importantly, we carve a space for this population in the political landscape. No conversation about housing, employment, insurance coverage or other supports should proceed without acknowledging the profound impairments and very different needs of those on the most severe end of the spectrum.

Given these critical benefits, I can’t help but find this insistence that only those children with the capacity to consent be written about and that only positive stories be told about them to be an insidious form of censorship, one directed specifically at those whose accounts conflict with the prevailing model of disability. That model prioritizes independence and societal change – neither of which will ever be primary goals of Jonah’s.

Still, his story is important, as are those of so many other kids like him. Parents, please keep writing! I look forward to reading your work.