Thought it might be a nice morale-booster to see such a nice family, who at least publicly cherish and value their autistic son. Speaking of cute kids! Also they take good care of bunnies they foster, which you’ve mentioned in other posts is something you care about.

http://www.mybunnies.com/family.htm

Instead, it’s all about deciding who’s being a jerk, reassuring parents that they’re not doing anything wrong, and accusing anyone who wants to question the role of parents of undermining the “real activism” (which of course has nothing to do with autistic adults being free to make decisions without a neurotypical Mommy and Daddy having to approve /sarcasm). A shame.

I do want to say to Ballastexistenz, as a fellow asthmatic in flare: take care of yourself, we’ll all likely be here, and your words will remain valuable if you give your body a bit extra of whatever it needs (sleep, rest, time recovering on neb etc.) that you’re already giving it *before* writing. Like in this post, your point would have been equally valid this morning after you’d given your body any extra time in bed it might benefit from. It might have just been easier for you to deal with the task if your body was a little less stressed.

Not being patronizing, since I “push” myself consciously or unconsciously frequently as well — I wouldn’t be in the condition I am otherwise. Just concerned that you are ultimately adding to your physical problems (asthma plus much more) in the long run. (I figure you likely know this already, but a reminder once in a while doesn’t hurt.)

Your last post posted while I was composing mine, so didn’t see it before mine posted.

Of course I can not make you answer any questions. And I have considered you anything but anyone’s puppet. My cyber impression of you, though, was that you were a stand up guy, and wouldn’t mind being challenged on things you said.

I “dared” to post something about this because I thought the dialogue would be useful. Because I thought that it was patently unfair to post accusations without backing them up. I haven’t tried to imply that you are an awful person. I wouldn’t have read your blog over the past several months if I thought otherwise. But I do stand by my stance that to defame others without putting facts to it is unfair.

I figured that by posting on this subject I ran a good chance of being villified as “just one more example of the problem”. Well, so be it.

Joe

p.s. Amanda, I still don’t see how submitters of posts to an online magazine change the power structure of a non existent organization. The Hub isn’t an organization or a movement.

I know that I’m quite weird in this area, but my thought on that has always been that if you’re accused of something, and you’re not doing that thing, all the accusations in the world mean nothing. (This doesn’t preclude reacting to threats relating to false accusations, but in that case you’re reacting to the threat, not the accusation, and the accusation itself is still irrelevant outside the threatening situation. And you’re not being threatened here unless I’ve really missed something.)

Also, to my eye, Larry’s definition of a bad parent wouldn’t encompas anyone on the Hub anyway.

“…there are ‘good parents’ who agree with that [proper recognition and a place in society] and want it as an aim for there as yet young children”

The idea of autistics having the right to recognition as worthwhile people with a place in socety is core to the Hub as far as I know. Correct me if I’m wrong.

When I am asked for specifics, if I cannot remember them- which is more and more often due to my own issues- I go back and track them down. But then, I am trained to do that. I was an academic, once upon a time and a different life ago. I also know it is expected of those who would contruct logical arguments, but that is the bias of working for those who test for such skills.

Some people are able to do that. Some aren’t. Some are only able to do it some of the time. My explanation above was a simplification, and doesn’t really convey how, just, GONE the original dataset is once the conclusion is reached sometimes. Or how long it takes a lot of those patterns to come together. Or how some of the pieces that form the patterns that we see can’t even be expressed verbally sometimes because language wasn’t built with our cognitive styles in mind. Yes, it would be nice to have specifics. But just because they’re not, doesn’t mean that the issue at hand isn’t valid. And I’m not saying that it should automatically be assumed to be valid, either. I’m just saying that other validation techniques can and should be used.

As far as being called bad parents… that’s something that probably does contribute to the weird power relations.

Dave Hingsburger wrote a book about power where he mentioned that front-line staff in institutions honestly view themselves as at the bottom of a power hierarchy, since they are generally at the bottom of the employee hierarchy. In doing so, they don’t realize how their power affects those beneath them (the inmates).

In my old post The Meaning of Power I described this in terms of a rabbit. I quoted Cal Montgomery quoting Hingsburger (yeek lots of quoting), saying:

“I don’t believe that most people realize,” he tells us, that “they have power,” that “they routinely abuse that power,” that “their behaviour is invisible only to themselves,” and that “their responsibility isn’t diminished because they ‘didn’t mean to’ ” (Power Tools, p. 4). That’s not merely a description of most “direct care” staff; it’s a description of most people.

Similarly I think that parents in this community can become so used to being “under attack” from above, that they fail to tell the difference between someone attacking them from above and someone trying to crawl out from beneath them. (And yes the same thing can happen with autistic people. Who will sometimes deny to their last breath that they have, or are abusing, power over some other sort of people.)

When I am asked for specifics, if I cannot remember them- which is more and more often due to my own issues- I go back and track them down. But then, I am trained to do that. I was an academic, once upon a time and a different life ago. I also know it is expected of those who would contruct logical arguments, but that is the bias of working for those who test for such skills.

If its my livingroom/familyroom/comfy spot analogy that is being taken as offensive in the references here, my apologies for offending. I was just trying to get across how I personally experienced the Hub and the blogs and connections I was making through the Hub. I also wanted to communicate how I hoped other viewed my own contributions to the Hub, which is an attempt- a poor one, I’m afraid- to help others understand the experiences I am having , and hopefully offer information to other parents who may be at the headless chicken stage. I did not intend to imply it was the only way to experience the Hub, cyberspace, or anything else. You are welcome to construct your own sense of experience.

A possible alternative, instead of demanding examples from the past, is to look for examples either in the here-and-now or in the future. If whatever Larry’s concern is is accurate (and I still haven’t had time to find/process it yet, so I have no idea) then whatever he’s said has happened will keep happening and we’ll be able to see it if we look. I think that’s a reasonable accomodation to make.