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Change: Be It.

August 9, 2011

There was drama last week, as a few people reacted negatively to a post I did about the apparent embracement of FC by people in the neurodiversity movement and my point that I could not embrace a movement that utilized a uniformly recognized harmful method (the only people not recognizing it as harmful are the ones promoting it, making their livings off of it). A facebook friend, disappointed in my support of Autism Speaks screen captured my private fb wall to post on a private thread. This post is about what my reaction will be when something like this happens.

I’m currently re-reading Fried Green Tomatoes. So many wonderful spots in it, so many lines I want to underline furiously or rush to the computer to share.

Like this one:

“The organization believed that women could find complete happiness if they, in turn, would dedicate their entire lives to just making their man happy.”

Let me shift this some to a present dilemma I’m dealing with, the need for some in the autism community to demand agreement with them or suffer banishment or worse. This is something that the online community is good for, all of us. And while I wouldn’t suggest banishment, I did write this weekend that an organization or loose grouping of people claiming to be science-based while embracing facilitated communication wasn’t really science-based, and a “movement” that adhered to principles I didn’t agree with was not a movement I could be a part of. It’s all good, though, as I was informed I wasn’t a part of that. I was, however, accused of attempting to hijack it. I am not. Let me make it abundantly clear that I in no way would dream of doing so. I don’t agree with those tenets set forth, and because it’s obvious my interpretation over the last two years from neurodiversity blogs was wholly incorrect, based on the symposium’s stated intentions, I am happy to renounce that in its entirety and let a group of people claim exclusive rights to it. I’ve got my what I believe and why.  And it’s mine. You know?

Now, does that mean my commitment to supporting an inclusive community of diverse voices and beliefs at the Autism Blogs Directory has wavered? Nope. I can disagree with you and still support your personal journeys and work to make sure those journeys are accessible to people looking for bloggers relating to autism.

I cannot however, dedicate myself to pretending to be someone or something I am not. I could have, knowing it would rile certain online friends that I had decided to volunteer with Autism Speaks, kept that a secret, not mentioned it all. I didn’t do that. I wrote several posts explaining what I was doing and why. I didn’t ask them to embrace an organization they didn’t agree with. I didn’t demand that I was right and they were wrong. I was honest about what I was doing and why.

Recently, a comment I made on my private facebook wall was screen captured and put on a forum. It included identifiable pictures of friends and their comments. And that, quite frankly, is not okay. I don’t mind owning my words, and I’ll share them here. But friends don’t take stuff from a private wall. No matter what those words are or who said them. Open walls are slightly different; they’re open to anybody on the internet and no expectation of privacy should be expected. My facebook wall is private. It’s closed for a reason. I don’t post much differently than I do here, not really, although there are more pictures of my kids, perhaps slightly more personal things.

So here are my words that seem to be such a problem, with my friends’ comments completely removed. I was asked about the AS controversy. I wrote:

Whether you consider them to missteps or huge, honking mistakes, I noted that they had their issues, that they had room for improvement, and that they were taking active steps to correct that. And if it helps to be an agent of change by being a part of the organization, to work to make it a better organization, well, then perhaps I’m following in others’ footsteps. Others who said yes when asked. There are some organizations that are too far off the line of what I can personally support. I can at least acknowledge when they’ve tackled an issue honestly and helpfully, though. I can point out common interests, and I can be friends with people who support those organizations. I don’t demand blind loyalty.

I’m not ashamed of the decisions I’ve made. I own them. And when I’m wrong, I’ll work to own that, too. I started the Autism Blogs Directory in May 2010 with Kathleen because the Autism Hub had collapsed, and because they were exclusive. We’ve had plenty of exclusivity in the online autism community. Kathleen and I wanted inclusion, wanted parents and autistics to know they were never alone, that there was a place for them, a place to find support and community.

Ah, much like the way I try to use my facebook wall. A place for support. And this is something that facebook friends (especially ones who’ve used my wall to argue should know, since there are notes explaining my facebook policy, and because I take the time, when one’s gone too far, to explain the policy privately or on that thread). Here’s one note from February:

So after someone used a screen capture of my private facebook wall and included friends’ pictures and words in it without consent, you can see why I would find this to be the act of someone who did not value my friendship.

I wrote a new note, because I think it’s important to communicate clearly:

You are welcome to disagree with me. You are welcome to respectfully do so here. You are more than free to go off and say whatever you like about me wherever you want to.
But if we’re facebook friends, don’t post my friends’ comments to my wall elsewhere if the facebook friendship with me was something you valued.
And if we’re currently facebook friends and you simply cannot manage to accept that we may not agree on everything and you feel the need to take from my private wall, or it just bugs the crap out of you to see that I buy into something you don’t, if the differences are too great to bridge the gap, then do me the courtesy of promptly defriending me.
I won’t take it personally. You’ll remain on the directory. I’ll be happy to showcase your work when you want it showcased. I’ll be happy to continue to support you at the directory.

Another quote from FGT:

“Of course, even though she was not religious, it was a comfort to know that the Bible backed her up in being a doormat.”

I am not a doormat. I will speak my mind on my own blog. I will try to back up what I believe and why. But I will not be a doormat. I will not blankly support a group because it demands it, and the minute it does is the minute you encourage my stubbornness.  Our directory has never turned down anyone asking to be on it. It is diverse, and it is inclusive. Do not be surprised that I would choose to be so, as well.

If you don’t like how the world is, then change it. You don’t do that from a bully pulpit, though. You do it with actual work in the real world, in your community, advocating for change, and then being instrumentally active in making that change occur.

In the book, Ruth says to Idgie, “I know, honey, but you shouldn’t get yourself so upset. That’s just the way people are and there’s not a thing in the world you can do you change them. That’s just how it is.”

I believe, in too many instances, this is all too true. We cannot change others. But we can change ourselves. We can put ourselves out there and stand up for what we believe. We can work tirelessly, ceaselessly for the change we want to see in our local communities, in our wider world.

Change: be it.


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