Oh Hey Blog, What's Up?

So, sorry for disappearing there, I didn't really mean to run away from the blog.

Real life is kind-of eating my face off right now so, sadly, writing is taking a back seat to preventing the vultures from plucking out my eyeballs. It's hard to concentrate. They're rather persistent.

ANYWAY, I do have some posts rolling around in my head so hopefully I'll be able to shoo the angry birds away for a bit this weekend to throw something up here. Not actually throw up, because that would be gross. Also, hard to edit.

I do have a little present for you, though.

Just got these back yesterday:

 

 

 

 

 Hi there, smiley Toad :)

 

His aide told me that the photographer was really great about taking a million shots to get a good one - it's exceptionally difficult to capture him smiling in pictures, even though he does smile a lot. Usually the school pics people will only take a couple of shots of each kid, but they made an exception for him and I am very glad they did.

 

 

 

Also? Zach just turned 15. Which can't be right. But I made enormous cupcakes anyway, in case this whole "I'm only 3 years away from 18" thing wasn't just a terrible, terrible hoax.

 

 

 

 

 

 

Sorry little man, you're not allowed to be 15 already.

 

 

That should work, right?

 

 

 

 

RIGHT?

Thank You, Mr Jobs

Yes, this is just one more out of literally thousands of such posts, but I think that's really the bigger picture. The outpouring of genuine emotion at the passing of Steve Jobs, a man most of those saddened by the news of his death never even knew, is the testament to his legacy. At least, he touched many lives, at most, he changed them. Either way, his innovation, intuition and drive made the world a very different place for a great many people.

The day he died, someone I know on Facebook posted that they didn't understand what the big deal was, everybody dies, the world will go on, and, he wasn't even that great of a guy, so everybody should just get over it already.

Of course in the days since, there has been a lot of "Steve Jobs was a terrible person! Stop making him look like some sort of saint!"  "His accomplishments are not worth talking about because he was a jerk!" "I don't care how good he was at what he did, he didn't agree to give away half his money like these other guys, stop saying nice things about him!" and on and on, you get the idea.

Let me just speak to this a little, because apparently it's Rant Month here on Planet Josh, then I'll get on with my own story.

First, it IS a big deal that he is gone. Regardless of what you thought about him personally, his contributions to the world of publicly useable technology are undeniable. And many. Even if you don't actually use any Apple products, chances are whatever you're using instead was created in order to compete with the Apple item that came first. PC users stand-down - you do understand that the only reason you're not still forced to suffer with MS DOS is because Windows was created to make PC's more like, oh that's right, Macs... don't you?? If you didn't know that before, you do now. You're welcome.

And if you have no idea what MS DOS is? That means you're either too young or too new to personal computing to remember what it was like back in the dark days before Apple changed everything.

I'll explain that in a minute.

Basically, Apple's innovations have revolutionized the industry, not only with their own products, but the subsequent results of their competitors' efforts to keep-up with, or even improve upon them.

As for Steve Jobs the man? How easy it is for people to sit back and accuse and insult and pretend to have some sort of real knowledge or understanding when they can't possibly.

I initially had several more paragraphs of rant here, but I think I'd rather just let it be.

I will, however, leave you with this before I move on:

"Recognizing that his death marked the end of an era in the progress of civilization, countless individuals, communities, and corporations throughout the world dimmed their lights and, or, briefly turned off their electric power in his honor on the evening of the day he was laid to rest at his beautiful estate at Glenmont, New Jersey.  Most realized that, even though he was far from being a flawless human being and may not have really had the avuncular personality that was so often ascribed to him by myth makers, he was an essentially good man with a powerful mission....  Driven by a superhuman desire to fulfill the promise of research and invent things to serve mankind"

That is from a biography of Thomas Edison. Who by most accounts, was a douche-canoe* of a person. Yet I don't think anyone is really going to argue that that should negate the impact or significance of his work on our world.

It shouldn't be any different in this case. You cannot choose to ignore or diminish Steve Jobs' contributions, simply because you don't think he was a "nice guy".

 (*no, I don't personally think of SJ like this. But there seem to be many people out there who do. That's my point.)

OK. Now that I've got that out of the way...

 

My story.

 When I found out, sitting at my desk using my i-Mac, that Steve Jobs had passed away, I started to cry. And I cried for quite a while. This was a bit confusing and it kind of threw me - I didn't really understand why I was so sad. But I really was.

As I read all the tweets and Facebook statuses that started to flood the internet, it was clear I was not alone in this feeling I had.

That's because Steve Jobs either directly or indirectly, has had an impact on all of our lives. Like I said, even if you don't own an Apple product, you're using competitive products that wouldn't exist if Apple hadn't started down the path first.

 When I went to college back in the early-mid '80's, nobody had their own computer. Not even most of the engineering students I hung out with. Because at that time, they were still big, expensive, and not exactly user-friendly. And by that I mean, unless you were a Computer Science major, it sucked. They weren't really being made for mass use by the general public, though they were starting to show up in schools more and more. Yes, I did an entire 4 year degree without a computer. Suck-it, wimps. 

In January 1984, during the Super Bowl, this happened:

It only aired once on tv, during that Super Bowl, then it was shown in theaters with movie previews.

It gave me chills then and still does. It left a pretty significant impression (and, by the way, was the first iconic Super Bowl ad, the one that started it all. Steve Jobs' innovation wasn't limited to tech gadgetry... ). At the time I was still a freshman and a computer of my own wasn't something I wanted/needed.

Seven years later when I started grad school, it was.

Well, yes and no. I knew I needed one. But I didn't really want one. As in, I'd rather have put on my bathing suit and stood in a bed of fire-ants. I had been trying to use my dad's IBM and discovered quickly how insanely annoying MS DOS was. MS DOS = Microsoft Disk Operating System. This was before Windows was created. Essentially, it was an OS that required you type "commands" to do anything and everything. And by commands, I mean this kind of nightmare:

      

 

 

 


I don't know about you, but this makes me want to go after someone with a cheese grater.

 

 

 

 

 

So even though I knew I needed one, I truly hated computers. If I was going to do this, I needed something that was not going to make me stabby.

Then I remembered the ad. Never underestimate the power of a really. good. ad. SEVEN YEARS later, I remembered it and got myself to Ye Olde Giant Computer Store. Wherein I requested a Mac.

I fell in love with my computer within hours of getting it home. That was 20 years ago. I've owned nothing but Macs ever since.

So the girl who hated computers and just wanted something she could use to get through grad school without becoming homicidal with kitchen implements, became a complete and utter computer fanatic. You need to understand I'm not exaggerating - you know that old "if your house was on fire and you could only go in to save one thing, what would it be?" question? Well, assuming that the boys and the pets were safe, my answer would be and always has been "my computer". Period. No hesitation.

That first one I had was an LCii, which, according to those who are more qualified to judge than I, was a terrible Mac. But that's just it - even a bad Mac was 8 million times better than the alternative.

I taught myself to type on that first Mac. See, despite my being a bit of a girly-girl back in high school, that really only held true for my appearance what with the wearing of much pink and things that involved bows or ruffles (it's ok, I might have to go throw up too). While most of my friends were taking sewing (yes, they offered this as an elective in the old days) and typing, I took Mechanical Drawing. I even had my own T-square. But despite the awesomeness of that, I made it all the way to grad school without knowing how to type. Like, at all. But my thesis needed writing and I had this great computer that I wasn't afraid to use.

I got my thesis done in a year. On that first Mac.

Steve Jobs' vision was me. I was the person who needed/wanted a personal computer but found the IBM PC and everything like it, cumbersome and aneurysm-inducing.

I really don't believe that I would have had such an affinity for the internet if it hadn't been for the Mac. And the internet has been a pretty significant part of my life for almost 20 years now.

When I was pregnant with Zach and on bed-rest for 10 weeks? It was a welcome reprieve from Jerry Springer and MTV's Road Rules. Don't ask. When Josh was showing signs of autism before we had him diagnosed? I was on it. It gave me somewhere to go, to read, learn, question, answer. There was support. And that has continued throughout the years with him.

It's kept me in touch with people I otherwise would have lost track of. I've found old friends, and made new ones.

These wonderful machines and the 'net helped inspire me to write.

These days, it's how I keep track of the world - I read all my news online, I rarely watch tv at this point. I read, explore, learn, laugh, connect, write, investigate, give/receive support, all from my beloved Mac. Currently, it's an i-Mac. Actually, has been various incarnations of the i-Mac since Apple first introduced them.

 

Macs I have known...    

 

 

 

 

 

 

 

 

 

 

 

                                                               Yes, I owned a purple iMac.  :)

 

 

                                                                                          

 

 

 

 

 

 

 

 

                                                                                   ... and I currently own one of these.

 

 

 

Of course there's the iPod, which has seen me through countless hours and thousands of miles on the treadmill. I'd probably weigh 750 lbs otherwise. You think I'm joking.

But the thing that makes me saddest, is that I will never be able to tell Steve Jobs personally, what a difference the iPad has made with Josh, and our family. I should have done so before he passed. So this is my regret. And I know that Toad isn't one of those kids who've made huge communication break-throughs with it, so you might be thinking, what's the big deal? You're right, he hasn't. Yet. There is always the possibility that with some more time and work, especially now that they are using one at school, that that will come. His language is progressing. It's very very slow, and most might not even see it. But it is.

So there is always the hope that the iPad will become more of an avenue for communicating some day. But that's not why it's so important or why I wish I'd written to Mr Jobs.

It's given Toadie some independence. An independence he's never had before. He's so reliant on others to do things for him and help him, that even entertainment or things to keep him focused or occupied always required someone else's involvement. Not any more. He can make what he wants to happen, happen, on the iPad, all by himself. He doesn't need me to do it for him. And because he can keep himself happy with it, we have so much more freedom to do things now that we never had before - he would have sat through an IMAX movie if the Science Center people hadn't kicked us out and now we know we can try it again if we want to. I would NEVER have attempted something like that before. He loves it, it has become an integral part of his world, and I love that he has at least some independence and the ability to keep himself happy. All I've ever wanted was for Toad to be, happy

My little boy does not go to sleep with a toy, or a blanket, or a stuffed animal. He goes to sleep every night with his iPad held close.

Something that has that much meaning to Josh, means everything to me.

The sadness, apart from the regret at not writing to him before he passed, is because for so long, his work has been there. Part of our lives, changing the way we do things, pushing the limits of innovation - we've happily bought iPhones, iPods, iPads, Macs, or their competitors, and never really thought about a future without the constant gifts we were being given.

Suddenly, that future is now.

 

 

Thank you, Mr Jobs. Our lives are better because of you. Wherever you are, I hope you know that.

 

 

 

 

RIP Steve Jobs

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary."

 

 

I am more sad than I can explain right now about his passing. But I do feel like I've lost a friend, which is really strange, considering I didn't know him personally. But if Twitter and Facebook are any indication, I am not alone in feeling this way. Says something about the man we just lost. 

Posted, very sadly but respectfully, from my iMac. 

:(

In Defense of Robert Rummel-Hudson

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.

 

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.

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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."

 

Exactly.