The TPGA "Dialogues" - Welcome to Thunderdome

Ok. Continuing on from the last post - a few points to make very clear before I get going on this.

I know that my "we all have to work together" routine probably comes across as woefully naive. It's not. I know first hand just how hard it is to bring people together to work toward change, especially when we all come with our own baggage, agendas, and focus. I know it's no cake walk, I know it's 8 million times easier said than done. I've been there, I get it. However, I also know that we have to. No matter what you think, we all need each other because a small group, no matter how loud they are, will get nowhere. A very large group, will make progress. Yes, again with the math. I'm also not saying at all, that an actual dialogue with self advocates and parent advocates shouldn't happen. I am saying that in this case, it was set-up and handled poorly. The "set up" part being key here - more on that in the next post.

I also know, that there are ways to bring people together and keep your numbers strong and growing. Alienating people along the way, no matter how righteous or important you think your motive is, is not one of those ways. Ignoring the fact that you've alienated people because your "readership grew" and therefore it doesn't matter? Also not a good thing. Pro-Tip: controversy lends itself to gawkers. But many of the people you lost along the way were not just there to see the show.

I read the "dialogues" with no baggage as far as TPGA or working with self-advocates went. In fact, I've even been a contributer to TPGA twice.

I'm going to say some things here that may make people uncomfortable. I apologize in advance - I am not trying to offend anyone but I will call a spade a spade and in doing so, I suspect I will. There has been a great deal of positive spin from TPGA  and I just feel very strongly that there are things that need to be said without the rose-colored glasses on.


Here's where you have homework. If you have not already been over there, here is the link to the TPGA Self-Advocate/Parent Dialogues, starting on Day 1. You can (and should) follow them through, at least through Day 8 if you can, particularly the comment threads. And if you are not familiar with the comment format there, each comment can have its own replies - those are important, read as much as you can. I'll meet you back here in a few days  ;)

Also, there are a couple of other posts I think you should read. This one by Stuart Duncan, the father of an autistic son and this one by Rachel Cohen-Rottenberg, who is an author and autistic herself. Both posts reflect very well how I've felt about this whole thing, Rachel's particularly - and just as a side note, if you read nothing else, PLEASE read her post and all the comments, Jesus can she write! She has this insane ability to explain things exquisitely well, and in such a calm, almost soothing way. I think I will go read her blog to relax from now on.

But back to the point, the content of what she says, is truly what has been at the heart of a lot of my anger and frustration over all of this.

Right then. Stage is set. There will be a 4th post (I know, I am a big fat liar, sorry - I told you at the start, there's just so much to deal with here), as I am going to focus on Robert's experience in this separately.


What Rachel wrote is spot-on.

This was in no way, shape or form, a "dialogue". And if you want to talk about disconnects? That's it right there. TPGA presented this as a dialogue, suggesting back and forth, listening by both sides, sharing perspectives, discussing. What this was, after the lynching of RRH, was an Autistic Self-Advocate war-room where if you were not autistic and dared enter, you were essentially shot on sight.

Unless of course, you were waving a giant white flag of not having your own opinion or perspective. Then you were ok.

The prevailing notion was that everything any autistic person said was ok, because, they were autistic, so they had the right to say whatever they wanted, no matter what. No parent that wasn't autistic, could say anything that wasn't considered derailing, hurtful, ignorant, invalid, not relevant, "argument from tone" (love that one), "ableist", or any number of other catchy terminologies that were being thrown around like confetti.

After a while it became a lot like watching unsuspecting bugs hit the zapper.

It was nasty. Plain and simple. And it certainly wasn't a dialogue. The editors, did nothing. Nothing to stem nor redirect nor even attempt to stop this from happening. And it's not as though they had no idea people were being driven away - commenters would stop by and say flat out that they came because they were interested in the discussion but after reading what was really happening, were no longer interested in being there. On day 6, when supposedly they were starting fresh, moving past the RRH bashing and sharing a new voice, within the first 3 or 4 comments someone had to drag it back in to the mud, specifically attacking him, again, for something that wasn't even mentioned in the day's post - he wasn't even there any more. At this point I was disgusted with this whole thing so I decided to mention that that was unnecessary and unproductive, and just inflammatory. I was immediately attacked. God forbid someone actually point out that people are just bashing for the hell of it and not really engaging in a productive dialogue. And I was attacked because those doing the attacking went straight to my blog to see if I was autistic myself or not, they found out I wasn't, so game on (I know this because the person spear heading the assault said so and I can track the visits to my blog back to TPGA, all around the time I commented). But that was the M.O., the Angry Mob would check on your disability status and then pounce if you happened not to be.

** a note: I am not suggesting that every non-disabled parent commenter was a perfect example of exemplary behavior. However, the vast majority did not deserve to be treated they way they were, in my opinion. **

And please, fucking spare me the "it's difficult, and some people just aren't ready... " "some people get it" "it's painful but necessary" crap. It's not that people weren't "ready" to have a discussion and share perspectives, it's that people had no desire to be told they had no business participating in something they thought they'd been invited to participate in or that nothing they had to say was valid.

In the description of the series, TPGA stated this:  

"Building constructive conversations and creating real social change isn't a garden party -- it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism."

They are right. But only if that applies to everyone, not just one side. Sadly, and really surprisingly, TPGA showed a bias through this that was obvious. I understand the motives for some of this - leaving RRH out for the time being - I do. I get that there is a problem and it needs to be addressed. But despite the fact that for the most part, the posts themselves were informative and enlightening from all of the participants (posts, NOT comments) and I was glad to be able to read them, the rest of it, and unfortunately the part that will stay with me, is how ugly it was. It's pretty clear that the vast majority of the people commenting have no interest in working with parents unless the parents are just going to be cheerleaders for everything autistic self-advocates say. And I'm sorry, but as I mentioned in my last post, not everything they say is right, helpful or productive. To assume that is ignorant and unrealistic and would be the same as suggesting that everything non-disabled people say is right, helpful, and productive - which I think we all know is not the case.

That's where I lost faith in TPGA. How could they be so blind? How could they go so far to accommodate one side, that they lost sight of the other? Sure, there are plenty of folks out there who thought this was awesome. I think there were probably many people who read the invited participants' posts, and not all of the comment threads. I know I tend to skip comment threads a lot, there's just not always the time and of course, it's the internet, so you know there's going to be a lot of stuff that makes you wonder how the human race ever made it this far...

I just never thought we'd see that at TPGA.

The editors have said that they didn't want to "stifle" the conversation. Well, I have news for you - the "conversation" was stifled. It just wasn't by the editors. You can have guidelines, you can post expectations as far as commenting goes and, you can, actually enforce those expectations in order to maintain an atmosphere conducive to shared dialogue. You can ask people to make sure they clarify before making assumptions, and remind them when they don't. If all you wanted was a forum for autistic self-advocates to come and air their feelings and grievances, then you should have presented it as such in the first place. That way, no one else would have come in thinking that they were going to be afforded equal footing for their thoughts or opinions.

I think the part that is telling, is the aftermath. I have heard from quite a number of people that there came a point where they were flat out afraid to say anything, because the environment was just too hostile. They knew that no matter what, it would be twisted in to something it wasn't. Some even compared it to comment threads at AoA. This is not a good comparison. I have seen several comments from some of the autistic participants recently, that say they don't understand what the big deal is, that they didn't see anything negative or people being attacked, and that even if some were driven away, why did it matter since they thought it all went pretty well.

What they don't seem to understand is that driving people away, is not going to help in the long run. It does matter. Remember the math. Anyone who showed up at TPGA and chose to read the posts and wanted to get involved? Was someone that could have helped build the collective voice. People who didn't care wouldn't have been there in the first place.

In further demonstration of their (TPGA's) bias, when Stuart made that post on his blog, which has a large readership - he was chastised for doing so. He was told not to "hide" on his blog if he had something to say, accused of "pontificating". Um, ok? First of all, there was no avenue to say anything on TPGA - if you weren't an invited advocate (self or parent) then you were restricted to comments and if you dared talk about anything other than what was deemed appropriate for that post? You'd be attacked for derailing. So, I have no idea how Stuart or any of the rest of us were supposed to make our points and opinions known there. And hiding?! REALLY? I don't think so, not when he has a bigger readership AND linked the "Dialogues" in his post (knowing full well that when he tweeted it, TPGA would get it). Frankly, it was likely that his post on his blog drove a lot of traffic to TPGA.

Yet when Rachel made her post? (Remember, she's autistic... ) The same editor that chastised Stuart also posted on Rachel's blog - no chastising though, just a very polite reiteration of how they had to let it happen so as not to stifle anyone... it's a painful process... all the same lines they've been offering up to avoid actually taking responsibility for not handling this well - and then this: "Listening". Huh. So, they'll listen to an autistic person who was unhappy with how everything unfolded, but when it was non-autistic people expressing their unhappiness, we were rebuked, told we were hiding, asked to step away. If you don't believe me, read the comment threads on both those posts I linked.

This is what has driven me to this point. And away.


Rachel, in her post, said this:

"I’m not all that interested in creating change with people who think that’s the way to go about it — for the simple reason that I fear for what the world will look like when we get there."