Well, Now They've Done it (part 1of 3)

...... aaaaaaand, here we go.


If you read more than just one or two blogs about Autism, you are likely aware of the whole "Self-Advocacy vs Non-Disabled Parent Advocacy Dialogues" series that's been over on The Thinking Person's Guide to Autism for the last week or so.

I honestly have so much to say, about so many aspects of what's transpired, I've been struggling with how to approach this so that it would make sense. There's a lot of noise. I have been reluctant to jump in to it to this point - I am an internet veteran, I was throwing down with people online when Clinton was still in his first term. I am carrying enough virtual battle scars to last me a life-time, I know how these things go. So I've been holding back (because I have managed to learn a thing or two over all these years!), though still watching what has been unfolding.

And it's been difficult to see, to say the least. But something tipped me over the edge today (yesterday? yeah, I have no idea what time/day it is now... :P ) and I stepped in. Certainly not to the extent that I wanted to, in the interests of maintaining some control and decorum. But I did, and so I figured it was time to bring it here.

I realize I am probably sounding incredibly cryptic to those of you who do not know what I am talking about, and I apologize for that. I will link something to you that will give you the scoop, but not just yet - I think that I am going to deal with this as simply as possible, mostly for my own sake in keeping my thoughts organized, by starting at the beginning. Which also means I will be writing more than one post on this.

So I won't prejudice you by posting the aftermath just yet. We'll start where it all began - this post written by Robert Rummel-Hudson, an author, and the father of a little girl who has an extremely rare neurologic disorder.

I read this post. I thought this was a great post, actually. As a parent of a child who has a disability, I could completely relate to the "story" he created to make his point.

If you don't know, here is what happened: though he received a good number of positive responses from people, he was also taken to task somewhat harshly - by a young woman named Zoe, who is autistic. This was what she wrote.

Aside from these two initial posts, there was a good deal of back and forth via comments - and it pretty much deteriorated from there. I encourage you to read both posts, and all of the comments following each. I know this is time consuming, but what I am about to launch in to will be better understood if you do. Particularly the comments on Zoe's blog.

Zoe made a good point about the lack of inclusion in Robert's post, I don't deny this, and, Robert took responsibility for that after he understood that was really at the heart of the matter.

But I will tell you this - most of what she and her supporters said offended me to depths I have never known before. And there we go, I realize that anyone coming here now from TPGA (more on that in the next posts) is going to throw the "ableist" word at me as though I were a cockroach that just landed in their soup.

And if you think that analogy was a bit much? Wait until part three of these posts.

Because apparently, as a non-disabled person who happens to be the parent and primary care-giver of a severely disabled child, I have no right to be offended. By anything. Because I am NOT disabled. See how that works? I am martyred, coddled, given sympathy wherever I go, rainbows just shoot up out of fucking nowhere when I walk, it rains goddamn Skittles on me and everything is fluffy bunnies and unicorns.


Nowhere, at any time, have I, nor would I, ever presume to know what it's like to be a disabled person in our society. How can I? On this point, I make no arguments, I truly can't know. And I would also never suggest that my life is more difficult than say, Zoe's. I have no idea. But I don't even think about making comparisons like that because it makes no sense to do so and it's wrong. I can only tell you what my experiences are, as Toad's mom.

And as Toadie's mom, I related to and understood Robert's perspective in his post very well - he is the father of a disabled child, what other perspective is he supposed to be writing from??? Did you really think that he meant that ONLY the parents of disabled children should or would be offended by that movie line?? I didn't get that at all. What I read was a man, trying through his words, to explain to others what it's like from where he sits. I did not get at all, that he was saying that the "R" word is really only offensive to these parents. He was trying to use an example. He gave one that made sense, given who HE is. That was all. There was nothing sinister in his writing, nothing underlying it that said, hey, we are more important than YOU, it was simply an attempt to make a point about something that in reality, should offend everyone.

And I guess that's where I also differ from the self-advocates who insist otherwise - this is a matter of human decency and respect, period. Not who is more important when it comes to being offended or advocating or any of it.

When a group of people is being dehumanized, it's wrong. End of story. I don't care if we're talking race, sexual orientation, religion, politics, disabilities, psychiatric disorders, Coke, Pepsi, it doesn't fucking matter. It's not ok, and everyone not only has the right to be offended by it, they should be offended by it.

Am I really being told that I do not have the right to be offended when an ignorant man said that my son should be put in a cage? I am not Josh, so it's not about me, or his brother, it's about him. Of course it's about him - it's ALL about him. But here's the thing: contrary to what many of the autistic self advocates would like to believe, Josh, doesn't. fucking. care. He doesn't. Argue all you want, you're wrong.

He is not cognitively capable of understanding something like that. But I am. And so is Zach. And our lives, revolve around this little boy whom we love deeply, and when you dehumanize him, even though he couldn't give a shit what you've said, those that care about him DO. He is a person, who deserves to be treated with the same respect and consideration as anyone else. Because even though it might not bother him to hear the "R" word, or people making jokes at his expense, or laughing at his Uggs when he wears shorts, or staring at him like he's a freak when he gets loud in public, it makes him vulnerable.

And my job, as his mother is to keep him safe, not only from things he doesn't understand can hurt him, but from people who could hurt him as well.

And when society treats people with cognitive disabilities as somehow less deserving of basic human decency, as is what happens when this kind of humor is "accepted" and routinely used in the mainstream, you put our children and adults who cannot speak or stand up for themselves at tremendous risk both from the public and those who are entrusted with their care. Bullying and brutality are not exclusive to the teen and LGBT communities. There are countless stories and examples of disabled individuals who've died or been severely abused at the hands of others, including those who were supposed to be caring for them - and I'm not talking about parents here. Here's just one http://www.parents.com/blogs/to-the-max/2011/09/15/uncategorized/can-the-word-retard-kill-this-murder-might-convince-you/


I am not Josh. Nor am I Zoe, or anyone else with a disability. No, I do not know what it feels like personally to be demeaned like this. I would never want to. I do not diminish the impact this kind of "humor", and I use the term loosely, has on those who are the intended targets. I'm pretty sure it's horrible. And I am very glad that there are disabled self-advocates out there, speaking up, speaking out, and making sure their voices are heard. They are important and should not be ignored. However, it is wrong, in my opinion, to suggest that in a situation where you are talking about both those who can as well as cannot speak for themselves, that certain voices are more important or have more rights, or should be given more credibility than the others.

When you start limiting the "right" someone has to feel something, you cross a line. Just as I may not have the perspective of actually being Josh, autism self-advocates do not have the perspective of being someone who loves him.

Much of my argument is directly related to Toad's inability to speak for himself. And this is something I will go in to in much more depth on in my next post.

The fact of the matter is, this was a well-intended, though perhaps a bit narrow in perspective, post about a much broader issue than someone being offended by the author's being offended, by something that was... offensive.

All voices need to be heard. Some will be louder than others. Some will speak directly from personal experience, some will speak as the only ones who can for someone else. Others, might simply feel that all humans should be treated with basic dignity, and not even be related in any way to a disabled person. We need all of them. Together. To make a difference. There is power in numbers. Sadly, this strange rebuke against non-disabled parents advocating for their children is divisive and only serves to weaken what could be a powerful force - because now we're once again, fighting amongst ourselves (gee, where have we seen this before??? ) over who has more of a right to be offended by something and who should or shouldn't be advocating for those who can't do it for themselves. It's baffling.

I know perfectly well that some voices will be heard over others for a multitude of reasons. But I also know that it's very dangerous to over-generalize. In this situation, where we are talking about something that was agreed to be universally offensive to disabled self-advocates, as well as non-disabled parent advocates, and disabled parent-advocates, why on earth is there an argument at all??? This is what mystifies me. The power to effect change in this situation will come from sheer numbers, and all varieties of people saying, hey asshole movie writer/director/producer, that's NOT funny, it's offensive and dehumanizing and we won't be paying to see anything else you ever do.


My 85 cents.


This situation between Robert and Zoe over the movie post, led to something else entirely. I alluded to it at the beginning of this post, and I will continue with my thoughts on what has transpired next time.