8/01/2011

Change: Be It.

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.

7 comments:

farmwifetwo said...

Anyone who'd do that to me, I would block ASAP. Had I been one that had their stuff stolen... I probably would have unfriended you to protect myself and my family. Which is too bad... and what they want.

But then again... I don't have a facebook pg so it's moot anyways.

You can't change an organization by screaming at it. You make change from within. Most people in the RW have no idea these people exist. Governments are discovering they do and as I posted earlier... Canada Revenue Agency has already removed Asperger's as a disability and you cannot get the disability tax credit anymore for that dx. These organizations with their "difference" are cutting off thousands of families from much needed monies to support them and their children. All I can say is "I told you so...." b/c I've been warning it's going to happen for years.

I just can't respect people that attack others simply b/c they can. The more we prove our children can grow, can learn, can be part of society... the less relevant they become. I'd rather give money to a group the respects me and mine... not one that doesn't and claims to speak for me and mine... most parents I expect feel the same way. Besides, 2 more years and Asperger's as a dx will no longer exist..... that'll be interesting.

Springingtiger said...

I have never felt the need to post a screen capture of a FB wall, but if I did it would not have occurred to me - it would, now of course - to conceal people's faces and names. Now you mention it I can appreciate why this could be a problem. Personally I value your work too highly to appreciate people upsetting you like this, but some people actions may owe as much to lack of thought as malice.

kathleen said...

((())) yes..be the change. You have always owned what you have said-always..You are someone whom I respect as a blogger(and adore as a friend)-Unfortunately, the world is filled with many people who like to rant and complain...yet never seem to do anything else-who like to complain that they can't change anything..yet spend lots and lots of time consumed with criticizing others..Every community has this..I'm sorry it has fallen on your doorstep this week. (((())))

melbo said...

What Kathleen said.

And I've plus one'd this because it's so good.

Rachel said...

Kim, the hostility and ugliness you're talking about are the primary reasons I no longer associate with movements or organizations. When I do, I find that people make all kinds of assumptions about me, about who I am, about what I believe, about why I do what I do. It's hard to be seen as a full-fledged human being; I just become some sort of walking stereotype. As a result, conversations become polarized and all nuance is lost. At this point, I'll just speak to life as I see it. If that pisses people off on all sides, I'll take that as an indication that I've succeeded in being true to myself. :-)

I'm not saying that others have to do as I do. I respect your wanting to make change from the inside. We all have our ways of going about things.

When I first found that you supported Autism Speaks, I have to admit that it triggered a lot of pain and frustration in me, but those were my feelings to deal with, and it never occurred to me to make them your problem. At this point, I see where you're coming from, and while I still don't support Autism Speaks, I'm glad that someone with your outlook on autism and autistic people is showing up there.

KWombles said...

Thank you, all.

Rachel, I can agree to that--must be being true to ourselves when we're irritating folks from all vantages. :) I don't understand why anyone would want people to not be true to themselves, would demand agreement.

I'm sorry that decision caused you hurt, but I appreciate that you valued our friendship to work to understand my motivations. Not everyone will want to make changes the same way, or even make the same changes.

AS isn't going away, and they're working to be more inclusive. And my three will be in the middle of it, growing up within it, helping to do that.

If there were other local organizations here I would be working with them, too, to make the world a better place. :-) I think open dialogue and looking for common goals to work on fosters respect and collegiality. I think the blogs directory is a success because Kathleen and I work on a policy of inclusion.

If I had waited, if I had read more, reacted less, I would have started this blog from a different vantage. I've grown and changed in the last two years. I think there are some who could stand to remember that a person who doesn't experience growth and change, an organization that doesn't experience change, well, there's something wrong with that. :-)

I appreciate all of your support and you know you each have mine. Thank you!

farmwifetwo said...

I've grown and changed these last 10yrs that I've officially been living in "autism-land". Technically 12 but starting from our first dx.

We have to change, we have to grow, we have to learn what is important to US... not anyone else.

I've had school admin's and teacher's say to me "what about the other kids"... and they are always surprised when the answer is "not my problem". I am working for what is right for me and mine. It isn't my job to share my few resources with others that want someone else to do it for them. They can work hard for what is right for their children. What is right for mine, is definately not what is right for theirs.

Right now AS gives you and your children community. Community with other children with similar issues. We all need support. As you said it's changing... change only happens from the inside, through discussion, through community. AS isn't big here, and I was reading some of the stuff online and I don't agree with it. But, I'm not in a "joining" frame of mind at the moment. Maybe one day I will... until that time I'll keep teaching about autism one person at a time as they come into our sphere.