I am shaking as I sit down to write this piece. I’m terrified.
I am a very sensitive person, and the last thing I ever want to do is to hurt anyone. Especially my own son.
My son, TJ, is 15 and has autism. And for the past year or so, I have written stories about him, and me, and my other son, and my husband, and our lives.
I have been so fortunate to write for this wonderful On Parenting section, hoping that our stories will not only promote autism awareness, but autism acceptance. That has always been our main goal. An amazing side effect has been empowerment – TJ reads every piece I write, and gives his blessing for every piece that gets submitted. Every single one. I have been incredibly humbled by watching my young man as he journeys through these stories going public – all I have ever wanted for him is to feel happy with who he is. Proud of who he is. Strong and empowered by who he is. And to see this actually happening is the most rewarding thing I could have ever imagined.
I have also been fortunate enough to share our stories with a wonderful site called The Mighty. This is a relatively new web site, just starting its second year, whose motto is: “Real People. Real Stories. We face disability, disease and mental illness together.” And again, TJ has been a part of my writing process for my pieces that get published there.
There is also a Facebook group that I have been honored to be a part of, where contributors for The Mighty share ideas, stories, and support for one another. It has been a safe place, with a strong feeling of community. This has not been the case, however, since just before Christmas.
Let me back up a bit…
The Mighty published a piece written by an adult with autism about her child with autism, called “Meltdown Bingo.” I can’t comment on the piece itself, as I never got to read it – it was quickly taken down after a firestorm of negative feedback. Some commenters, most of whom have disabilities themselves, thought it was the straw that broke the camel’s back in terms of insensitive posts on The Mighty web site.
Suddenly, on the Mighty Contributors Facebook page, I was seeing all these terms I had never heard of before: “inspiration porn,” “mommy martyrs,” “pity party writing,” and “#crippingthemighty” – a name given to the movement of protest. This group was furious about the post, and most posts written by parents, as they told us “nothing about us without us,” — one of the mantras of the disability movement.
I am all for that! I have been running my stories by TJ, writing with his integrity in mind, knowing that the internet is forever, and wanting him to look back on these stories with pride, rather than with shame or embarrassment.
The problems arose, however, when all of us “mommy bloggers” were collectively scolded by this disabled community. Suddenly, there was a published list of rules we were to told we must follow by the protestors, otherwise, they said, we are disgracing our children (if we should write at all, that is). That we can not be our children’s voice, and we can never know what our children are living through. That we need to listen to them – they are trying to teach us all something – and it’s time to shut up and learn. And do not respond, or you will be ripped to shreds. I saw it happening in this previously very safe, very comforting community. And it was splitting this community in two.
It broke my heart.
I agree that I am not my child’s voice. TJ has his own voice and he’s not afraid to use it. But that isn’t the case for all of the parent writers. Many of them are the voice for their children, who have no ability to verbalize their own needs. Many of these parent writers have critically ill children, who found this community a safe place to find comfort in one another, only to be told they can not speak for their children at all. Many of these parent writers will be taking care of their children for the rest of their lives, and don’t know what will happen to their beloved children after they die. Many of these parent writers were now afraid to engage in any conversation with this disabled community, who repeatedly told us that we are not hearing them, and we need to be quiet and just learn.
There are so many different kinds of parent writers. We write about so many different types of children in so many different types of situations. I, for one, can not possibly represent all parent writers in my stories – I just represent us. The Jordan family. TJ, Peter, Sean and Lauren.
How is it, then, that the entire disabled community can be represented by this one group, #crippingthemighty? (I know that the entire disabled community isn’t, in reality. But where are the other voices?) How is it, then, that this web site that has done so much good, and made so many people facing challenges feel less alone, be held singly responsible for the awful feelings that this group is feeling?
Parents are now apprehensive to write anything, for fear of being misunderstood and being ripped to shreds by this group. The good that has been done by The Mighty and by parent writers is grossly overshadowed by this one movement of protest.
And I don’t think it’s okay.
So I am going to continue to write. For On Parenting. For The Mighty. For SNAP, Special Needs Advocates and Parents, a new blog group created by like-minded parent writers brought together by this controversy. For the other organizations that I regularly write for.
For my family. For TJ and Peter and Sean. For promoting awareness and acceptance of the autism community to those who may not know so much about it.
I am a parent writer. My voice counts. My stories count. My community of fellow writers count. I have listened. I have learned. And I will continue to write.
Lauren Swick Jordan is a frequent On Parenting writer and blogs at Laughing…like it’s my job.
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