Because it's the right thing to do.
And someone needs to. I'm just sorry I'm not a more prominent voice for this to be heard, but for what it's worth, here it is. I'll say again, that while I have no problem with the idea behind the "Dialogues", it's how this was set-up and played-out that I take issue with. I think what happened to Robert was shitty. So I'm going to spend the next 8,000 words (ok, give or take 5,400... mostly take) telling you why. Then you'll be pleased to know I'm going to shut up. For a day or two. Probably.
As a direct result of all of this, Robert and his family have been subjected to a great deal of ugliness. Via comments, posts on other blogs, personal e-mail, and even over the phone. Yes, someone went to the trouble of finding his phone number in order to call him directly, in his home, to express their hate. Someone else e-mailed to offer their support, but also to tell him that they lived very close to him. While the intent of that e-mail may not have been to threaten in any way, when you are being subjected to anger and threats in every other way including over the phone, to be aware that someone now knows where you live... is unnerving to say the least. If complete strangers can get your phone number and know your address in the midst of all this anger coming at you? You're going to retreat. You are going to say, ok, this is now scaring my family and has gone too far, I'm done. Which is exactly what Robert did. Can you blame him?
After being subjected to a week of angry people telling him off and inundating him with nastiness at every turn, including his home, he gave up.
And yet he continued to be vilified or made out to be some sort of ignorant bumble head, even after exiting the "Dialogues". Both there, and elsewhere. And it continues to this day.
Who is doing this? The autism community.
And for what? For having a different view of things? For having a contrary opinion? For NOT being a part of the autism world and therefore not being fully in-tune with its internal politics and struggles??? REALLY?
How can you possibly justify this behavior? The angry-mob and "let's get him" mentality is not much different than the kind of bullying and ugliness I thought we were all fighting against.
In my first post about all of this, you saw how it started. A blog post written by Robert, about a terrible movie with offensive dialogue. To try to convey his point, he creates a scenario. He's a father. His daughter is disabled. He writes his blog and has authored a book wearing that Dad-hat. This is his perspective. We all write from our own perspectives - look at the sub-title of this blog. I am writing this as Josh's mom, that is my perspective.
Was his focus a bit narrow? Yes. Should his story have focused more on those actually being targeted? It's always easy to look back at things or what others have done and say that they should have been done differently. However, I also think it should be obvious to anyone that there was no subversive intent, no abuse of privilege, no desire to trivialize anyone or any community, no malice. He was simply offering an example, from the perspective he knows best. We do this all the time. Examples are the catalysts for further thinking, that's the whole point of them. I didn't read his post and think, "oh, so, because he wrote a story about a parent being offended, that must mean he thinks they are the only people that should or could be offended... ". And I truly doubt that anyone else really thought that either.
But if Robert had written his scenario from the perspective of someone who actually had Down Syndrome, from what the disabled self-advocate community is telling us, he would still have been in hot water with them because he can't possibly speak from that point of view - he's not disabled.
It's an impossible Catch-22.
But he wrote what he wrote, you've seen the aftermath, and, he came to understand the true point that Zoe was trying to make despite there being a lot of other issues tossed in on top of it, and he amended his introduction to the post to reflect this.
Then along comes TPGA.
(Remember, Zoe is autistic. Robert's daughter, is not.)
So TPGA comes along and asks Robert if he would participate in this "Dialogue". From their own description on Day 1, this is how it was billed:
"We're hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler's Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne'eman, President and co-founder of The Autistic Self-Advocacy Network. Why?
Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect -- especially when it affects our ability to work towards common goals. "
Then there's the part I quoted in my last post about listening to each other, not being defensive, it's hard work, try to understand different perspectives, etc.
Then, very specifically, this:
"Zoe and Rob disconnected spectacularly last month. If you don't know the backstory, see Rob's post, and Zoe's reaction. Neither is happy with the way that scenario played out; they are using this space to attempt a do-over. Zoe is going first."
Ok. So, reading this introduction, it looks like this is supposed to be a coming together for Rob and Zoe, as well as a more broad discussion - they refer to being a parent of a disabled child vs actually being disabled. The term autistic is not specified here. And they have Robert as the parent - his daughter is not autistic, so, this seems to make sense. Sort-of. The self-advocates, however, are both autistic.
That was a bit of a head-scratcher.
But, let's see where this goes. It's TPGA, this should be ok...right?
For his part, Robert had misgivings about participating. He was concerned about ending up at the bottom of a dog-pile, given the reactions he had already been dealing with, almost exclusively from the autism community. He expressed his concerns to the editors of TPGA who assured him that they "wouldn't let that happen".
Now, you can argue, as the editors have, that he's a grown-up, he knew what he was doing, he chose to participate, therefore, it's no one's fault but his own.
Yes and no. Put yourself in his shoes for a minute - you've had this... situation... with Zoe and her supporters. The way things have played out, you get the impression you've just alienated an entire community of people unintentionally. You are being offered an opportunity to try to get this sorted out. You might be a bit uneasy about walking in to the lion's den, but you do it anyway because you believe it's the right thing to do.
I can tell you from my own experience during my "disconnect" with Scott Stratten (Mr "Unmarketing") last fall over the Shut Down for Autism awareness thing, that I would have done the same. Scott's followers were harassing me somewhat on Twitter after the whole thing blew up. It wasn't horrible, but it wasn't comfortable either. If he'd asked me to come to his blog, so that we could have a "do-over", I would have been anxious about it, probably scared, given what I'd already experienced from him and his supporters. But I would have done it anyway - because I wanted things to be right again, I wanted to work it out. I probably would have been eaten for lunch. Would that have been my fault? Would you have said to me, you are a big girl, you didn't have to go over there? If you did, why wouldn't it be THEIR fault??? Why would they get a pass for behaving badly and I get chastised for trying to do the right thing??
That's exactly what happened here with Robert.
Regardless of whether or not you agree with him, the kind of anger and ugliness he's been subjected to through all this is not ok.
And the fact that the editors at TPGA allowed this to happen, is shameful.
It became clear as the days of the "Dialogues" wore on, that this was not what it had been presented to be. I know I was certainly confused. But by the beginning of the second week, two things were very clear: this was all VERY specific to autism and autism alone, and Robert had been a scapegoat. They used the situation between him and Zoe to make him the bad-guy. They couldn't very well take someone out of our own community and rip them apart so they took him - an outsider, who had absolutely no idea what he was really getting himself in to, but who'd presented himself to be similar (in their opinion) to those whom they were really angry at.
He was their lightning rod. They'd seen the reactions on Zoe's blog, they knew where this was going to go. He was going to be made an example of. And this, this set the tone. That entire first week set the tone for the whole thing to be one, giant slap-down. That is where TPGA went horribly wrong in setting this up, if their desire ever really was for this to be an actual dialogue about "disability", as is suggested in the intros each day. But I don't really think that it was. (Note: it is only on Day 3 that "and autism" is added, though it goes back to being just "we want to encourage constructive conversations about disability" after that).
First of all, as has been pointed out, every single disabled person, parent or otherwise on the invited panel, was autistic. No other disability was represented. Except for Robert's daughter.
Second, there were only 2 non-disabled parents included in the entire 10 days - Robert, and we've already established that he is not the parent of an autistic child even though this was very much about autistic self-advocates' issues with the parents of autistic children; and Kristina Chew. Now Kristina's post drew very little commentary, and essentially no controversy. Aha ! you say. Well, let's look at this a little more closely... Kristina and her husband have established, prior relationships with several of the disabled self-advocates and she states this in her post. She is known to them, they have worked together in the past. She was picked as the antithesis to Robert. Like I said, they weren't about to go so far as to tear down one of their "own". Robert was apparently a convenient foil.
Even now, all said and done, as Robert is trying to move past this unfortunate experience and the trauma it caused his family, there persists this need to paint him badly -
in a recent article written about the "Dialogues" for the Washington Times Communities online, the author had asked Robert via e-mail a number of questions. For the published article, she chose only to include the most self-deprecating comments from within his responses, creating an image of ineptitude and failure. Journalistic/editorial license? Sure. But it's important to note that the author is a close friend of the editors at TPGA.
Here is what you didn't see:
QUESTIONS FOR THE PARTICIPANTS:
1. Why did you want to take part in the Dialogues?
"Well, I was invited because I was part of the original disagreement that went so wrong, largely because of my own insensitivity to and unfamiliarity with the world of adult self-advocates. But in a larger sense, I felt like there was was a unique opportunity. I've long said that the struggle for disability rights isn't one of education or funding, but rather should be expressed in terms of basic human rights. I believed a united disability community was a necessary part of that."
2. What is the most important thing you wanted people to know?
"I want people to understand that parent-advocates are imperfect advocates, but we can learn and can do better. We understand that we get opportunities to be heard that self-advocating adults often do not. But in significant ways, we are also silenced or dismissed by the rest of the world. We are fighting some important fights, and we need a better understanding of how adults with disabilities can and should guide policy and change some of those elements that we're fighting against. It's important that parent-advocates learn to do it better, because we're not going away."
3. What is one thing that you have learned from the Dialogues?
"Beyond the things I stated in my final post in the series, I've learned that just finding a safe place to even begin to have this conversation is extremely difficult, perhaps even impossible. There are so many things that parents say that result in very intense responses, reactions against tone and language triggers that parents like me are largely unaware of. Our insensitivity to those triggering phrases makes for a great many missteps. Part of my problem is my unfamiliarity with the autism community. I'm not alone in that, and a great many parents of disabled children who aren't on the spectrum may find themselves in a similar situation. The lack of common language and mutual perspective is difficult, at least for me.
Looking back, I probably wasn't the right person to take on this dialogue. It doesn't help that like a lot of parents, I bring a lot of my own baggage to the discussion, and my own defensiveness. Ultimately it was that defensive posture that re-enforced the walls I put up, and ultimately caused me to fail, both as a listener and a communicator. "
4. Where do you hope this conversation goes from here?
"Truthfully? I don't know. I don't honestly feel like a great deal of communication has taken place so far, and there's plenty of "fault" to go around for that. I still think there's potential for real learning here, but the barriers to that communication have been much more daunting than a lot of us expected. It comes down to what people are willing to risk, and how much they stand to gain from that risk. It's like being told that there's a bee hive that might be full of delicious honey, and all you have to do is dig through the bees to find it. Maybe if the conversations continue, perhaps in a less free-for-all environment, that can change. Like I said in my last post in the series, I have my doubts, but I have hope, too."
Those were Robert's answers to the author's questions, as he sent them. Obviously he had and has a lot more to offer than simply where he thinks he went wrong for his part. But it was that one paragraph that was the author's primary focus. Out of all of that?
When I spoke to Robert, this is what he had to say about that piece:
"If the interviewing blogger had asked me what I thought of the piece before she published it, I wouldn't have told her what I thought she should have written. That's not my place. What I would have simply asked her is this: Did she pull the particular quotes that she did from the larger context of my answers because she felt they accurately represented my position, or did she choose them to support the narrative she was constructing? And I think that's an important question."
Yes it is.
I truly don't understand the need to tear down this man the way he has been by "our" community. And I honestly have a hard time saying "our" now, because after all that has been said and done, I don't really feel like a part of it now myself.
It's a sad day when a group of people turn on another who shares so many of their goals and struggles and works just as hard to give his daughter a voice as any of the rest of us who are either waging our own battles or fighting for another.