A Call to Action

Where are the organizations that help individuals?

Where are the organizations that provide mentoring or someone to listen when you need an ear?

Where are the organizations that will help individuals find the help they need?

Help us become that place.

It's a start. A new beginning. A chance to make a difference.

Saturday, May 29, 2010

Showcasing Blogs Worthy of Your Time: Give a Holler

It seems that drama and polarization get the lion's share of attention; if nothing else, reality television proves this. Any storyteller worth her salt knows there must be a conflict, that the heroine must attempt and fail a couple of times before resolving the situation.

That leaves powerfully little time and attention spent on the good, the positive, the community building efforts. We need bad guys to fight against, to get all fired up.

It takes effort to choose to look to other stories, to positive pieces, to happy events. We'll showcase blogs over the summer that we feel offer positive pieces and hopeful stories, as well as real and relevant pieces relating to parenting a child on the spectrum or being on the spectrum.

First up is the blog The Domestic Goddess. She's funny, she's real, and her posts range from the hopeful to the all-too-real that we can, if we are parents, relate to all too well. I hope you'll drop by, give her a read, and say hi.

Community building begins with conversation. If we don't leave a little note to share that we were there, that we appreciated what we read (or if we didn't, a calm, matter-of-fact expression of disagreement), we'll never get where we want to be.

Wednesday, May 19, 2010

Making Room for Folks: Good Old Fashioned Community Building

I wrote on Tuesday at Countering that the hub was back up in a limited form and that Kathleen and I had created a new autism blogs directory that aims at inclusion.


The hub came back up with 21 blogs linked to it. Most of the blogs, though, did not make the first cut. Gone were most of the parent blogs. Gone were most of the autistic individual's blogs. Everyone who didn't make the first cut will have to reapply.


Kathleen and I (and T and L) believe that the need for an inclusive autism blog directory exists, one with an open policy, so we set up Autism Blogs Directory. As of now, it has over 150 blogs listed. Not bad for a days work, and it's a list we hope to see grow.


Kathleen and I have had the opportunity to discuss our feelings and thoughts regarding hubs, directories, and inclusiveness yesterday and today on facebook on a thread with others who were concerned about the hub and the loss of the blogs that were once represented. I'll not repeat other's postings, but I will post some of my comments and try to weave them together in a cohesive whole that explains why we believe the Autism Blogs Directory is so important for the autism community.


I responded yesterday to a post pointing out that individuals could reapply with this thought:

How is this more transparent than how it was done before, and by what stretch can they say it represents the best in autism blogging? How can the anonymous admins realize that in their selection of blogs that made the first cut, they've created more division? If they wanted to do the whole thing over again, then it would have been better to come back with no blogs linked and required all interested bloggers to submit their blogs. It would have been better to have clear guidelines about the selection criteria, and it would have been better to have taken more blogs on, not less.


It's a clique, about insiders and outsiders, and creates more divisions than it heals, and it's unnecessary.


People need to be able to find blogs with a diversity of viewpoints, need the chance to see where we have commonalities and can work together. They need it visible for all to see, with no hidden agendas.


Community building takes communicating openly.

I stand by this comment. When you close it down so tight, keep it hidden, and say it's about quality over quantity, you're not thinking about building a community with others, but about further restricting that community: ingroups and outgroups.


So, does having multiple directories strengthen or weaken the community? I want you to think about that. It was an argument made in the thread. Does it?


My response to that was:

Yes, but one hub that represents a dozen voices when there are thousands out there is not a community; it embodies division. No one should co-opt the hub title, but we all essentially create our own small communities with our blogrolls and there are many webrings and directories out there, as well. If the goal is to be out there so that parents, families, and autistic individuals know they're not alone, that there are thousands waiting to welcome them into a community, then directories serve several purposes, one of which is as a gateway to the various blogs.

Community building is important to Kathleen and I, and certainly, if you've read any of Thelma, Louise, and Mamma H, it's all about the community. We think that parents and individuals on the spectrum need to know that there are a diversity of voices out there, and to present that diversity (yes, even those that dovetail into the woo--we're still going to counter the woo, the nonsense, and the complete and utter horseshit we run across). If you believe in what this particular blog, Respect for Infinite Diversity, stands for, then you think everyone period is valuable. Everyone. Even dumbasses. That's the whole point.


Of course, the idea that one directory would place side by side Countering and Age of Autism? Gads. Well, Autismo Hub already does just that. The world didn't implode.


I wrote on the thread:

I believe strongly in countering misinformation; I think Countering proves that. I also don't believe that elevating fringe elements and outright quackery is the thing to do.


However, Kathleen's right; there are parents out there whose focus is on their children and making the world a better place for them. I see our blog directory as a natural extension of Respect for Infinite Diversity. We want to work with others, both family members and individuals who are on the spectrum to advance acceptance, accommodation, and appreciation (and as Squid pointed out last month, action wouldn't hurt, either).


I don't think the autism blogs directory, especially where it's at now and with our stated policy of no Best, no hate blogs and no outright quackery/snake oil salesmen, is anywhere close to giving the anti-vax side a measure of equality. AoA, Stagliano's blog, and Ginger Taylor's blog are listed, but in their own category. Doherty is a parent. His blog, although I disagree with him on almost everything, is listed under parents. Mitchell, although I disagree with him as well, is listed under blogs by autistic individuals.


Sometimes, if we're committed to the ideals of community building, we take the moral high ground and acknowledge that voices we disagree with have the right to be acknowledged.
We're not trying to supplant the Hub. We're not trying to co-opt its goals, either. We are following our own goals, our own commitments. We're pleased when this coincides with our friends' goals, of course. And we respect our friends when our goals diverge.



Placing fringe groups side by side (and well, it's not actually. AoA has it's own little space sandwiched between a whole boatload of neurodiverse and science-based blogs) with science-based doesn't hurt our endeavor, doesn't lessen the value of what we're trying to do. If people find the autism blogs directory, they are presented with over 150 different blogs, most of them positive, most of them respectful of those with differences, most of them grounded in science. I'd say, if you get to the directory by way of hunting for woo, there's at least a chance for the woo to be directly countered.


Ultimately, though, the individual Kathleen and I spent the morning in conversation with agreed we had a difference of opinion. And that's okay: we respect our friends when our goals diverge.


My last comment (with the first two nonrelevant paragraphs not included):


However, I'll acknowledge that your definition of neurodiversity diverges from my own and the definition that we use at Respect for Infinite Diversity.


It would make no sense to be inclusive of all blogs on the autism hub, which is a select listing of blogs catering to a particular philosophy.


Certainly, the AoAers will never be on my personal blogrolls, as I view personal blogrolls as an indication of alliances. I do not consider myself to be personally allied with them, but instead a staunch opponent of them.


Where individuals are interested, though, in promoting acceptance, appreciation, and accommodation, where their focus is on making things better for autistic individuals and their families, I could care less what they think caused the autism. I consider myself to be allies with those individuals. And when the AoAers slip over and engage in community building activities or writings, I'll acknowledge that as well. It's part of being open-minded and seeing people as multidimensional.


Our blog directory is broader than our personal belief system, although maybe it's not: we think you should talk to people who are willing to build a community, so we're going to use that directory to foster that goal.


No, AoA isn't willing to do that 99% of the time, and so that blog and two others are clearly placed in a category that reflects our disagreement of their positions.


Because the two personal blogs, although by parents, are not primarily about parenting children on the spectrum, but are staunchly anti-vaccine (or woo-based), they are included there and not in the parent directory.


If you look at the blogs linked, though, most of them are by individuals who at least hold with our goal of making the world a better place for our children and others on the spectrum. In fact, less than a handful are ones by individuals we don't consider ourselves to be allies with.

I'll add that I'd like nothing better to take those two parent blogs listed with AoA and put them over there in the parent directory, but as long as there's a decided promotion of AoA/anti-vaccine philosophy, I won't. There are times, though, that the posts on Stagliano's personal blog are absolutely lovely, and I mean that. She loves her daughters fiercely, and anyone who doesn't see that misses the point entirely. Even if you oppose someone's positions, if you can't continue to see the person's humanity, take in the complex nature of that humanity, you immediately cast them to the outgroup, and it's enough. That refusal to see these people as people has to stop.


Joseph Campbell, in discussing myth and modern religions, wrote:

"People are afraid to move into the free fall of a totally new way of looking at others. So the new mythology to come must be a global mythology, and it's got to solve the problem of the in-group by showing that there's no out-group. We're all members of a society of the planet, not of one particular place, and the fact that the three main religions of the Western world-Judaism, Christianity, and Islam-can't live together in Beruit is a refutation of all three in terms of their value for the contemporary world. They're monstrous! We must begin to realize that each is saying in his own language what the other is trying to say in his. There must be brotherhood and cooperation. Because unless that comes, we're going to blow ourselves to smithereens."

We are a community; we share common bonds and common ground, and we need, even as we disagree, to remember this. Because if we don't, we destroy what common ground we have.

Sunday, May 9, 2010

Implosions of Colossal Gravity, or It will All Work out in the wash

It's inevitable that there will be disagreements in a heterogeneous group, especially one as wide ranging as a group that supports diversity. The Autism Hub represented blogs by parents of children on the spectrum and individuals on the spectrum, as well as some professionals' blogs.

It was a fairly exclusive club, compared to the hundreds and thousands of blogs related to autism that march on in relative obscurity. Don't believe that there are thousands of blogs out there related to autism? Do a google blog search for the last 24 hours and you get 13,400 hits. In one day. Expand it out: one week 36,300 hits on blogs related to autism. The hub barely touched the surface of bloggers talking about autism. How many wonderful voices out there have been missed because people only looked at the hub?

This past week saw events that led to the hopefully temporary shutdown of the hub while members work to figure out how to best go forward. Since the ladies of RFID were not members of the hub, it's not a discussion we'll be privy to or part of, and we're okay with that. We know and are friendly with almost all the hub members or have at least visited their blogs a time or two. Many of their blogs made it on my blogroll, and that shortcut for me the need to go to the hub to keep track of the new posts. Many other blogs I found through looking through other bloggers' blogrolls. I added the ones I felt an affinity for to my blogroll.

Now, truthfully, if I disagree with most of the content or found the blogger objectionable, I don't add it to my blogroll, whether I ever visit the blog or not. It's easy to notice on Countering that I visit AoA frequently, but you'll never see it on my blogroll. I think we have the right to link to whom we feel compatible with and to avoid or denounce whomever we feel morally, ethically, or factually counter to. It's a right and a privilege that I think we should be reluctant to give up.

I think that there can be great advantage to having a collection of links to various autism-related blogs that is easily accessible on google searches, but if it's an exclusive listing in which one has to agree to tailor one's content to fit the list, it's a list I'm just as glad to say no to. Freedom of speech, especially when one blogs out of an intense personal desire to communicate and does so freely (as in there is no financial inducement for doing so), is too important to sign over to an arbiter simply to be able to be on a list of links.

Say what you will about autismo hub (and co-opting the autism hub graphics is probably not the best way to handle it), it has a wide sampling of autism-related blogs, many of which are run by individuals whose positions I find at the very least highly objectionable. But the important part is that in one location, a wide sampling of positions are available to interested readers. This is not a bad thing. It's not a bad thing to have segmented lists, either. It can be helpful to have a list of blogs that hold various positions, but that do not require an agreement of allegiance.

The wonder and beauty of free blogs is that anyone can do what the individual(s) running autismohub has done; open a blog for free, choose a name that makes it most likely to be on the front page of a particular search, and then use that blog to provide a list of links to autism-related blogs. Or, if they really want to venture out, then do a google blog search for autism and see what you can find. If you find something grand, add it to your blogroll so others can find it!

If what others want is community building, then I think if we take a look at our blogrolls on our own blogs, we'll see we've done that already without the need of the hub. Find one good blogger, look through their blogroll, and no doubt you can find dozens more. Add them to your google reader, to your blogroll, favorite them, whatever you need. Read their blogs, start commenting, and watch relationships grow and build and a community be formed.

Maybe the hub did that for its members. What I know is that it can be done without the hub and in a more expansive way that avoids the squabbles that led to the hub going on hiatus. People can link to whom they choose, ignore whom they choose to, and demands to choose sides can be ignored or paid attention to, as the individual so chooses.