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| ID: | 1615 | | Title: | Insults and representation - http://thiswayoflife.org/blog/?p=184 | | Description: | Over the last few days, I’ve received more insults than I’ve received in years, and had more of my words misinterpreted and turned into strawman arguments than I ever remember.
I’ve been called, specifically, a bigot, egotistical, prejudiced, and an exclusionist.
What did I do to deserve these names? I stated - using the world “leader” because I don’t know the right word - that the leaders of the autistic movement should be autistic people. That we should be setting our direction. I didn’t call anyone names, I didn’t say that non-autistic parents or professionals were evil, doing harm, or any of the much worse things I was called. But merely presenting this unpopular point of view was enough to bring the wrath of many upon me.
My argument was taken to mean that I see a hierarchy in autistic advocacy. I supposed that’s semi-true - I do think people inside a group deserve to be listened to more than people outside that group, at least when it comes to things concerning that group itself. Perhaps it’s because I’ve grown up in a western US state, and seen what happens when rule is attempted from afar, without the common understanding of the actual culture. But I certainly wasn’t talking about a rigid hierarchy where there is a head autistic, some other autistics under them, and on, eventually to the lowest of NTs, with reporting lines and clear statements of what is acceptable and not to think. I’d never think such a thing, and in fact don’t know of anyone who does. It certainly would be absurd. But I do think the direction of the movement - the people setting that - need to be autistics. Not a few autistics in key positions, but rather every autistic is already in that position. It’s not about one or another voice. It’s about the combination of voices from the entirety of those who identify as autistic. That is the position of “leader” that I was talking about, although now I realize that leader was the wrong word - with that word used, many were unable to read further and understand my meaning and what I was using the word to mean.
Another argument is that I was trying to say the Autism Hub should be run differently. Nothing I said was addressed to the hub, although after the abuse I’ve put up with this week, I will certainly look at it differently. (I’m NOT, lest anyone continue yet another false accusation against me, talking about disagreement or even people that think autistics shouldn’t be exclusively the people setting the direction of the movement; I’m talking about insults, name calling, being told to shut the fuck up, and other similar types of attack - that’s very different than presenting a divergent opinion; I do not feel attacked or unsafe in an environment where people disagree with me but remain respectful of the rights of others to also disagree)
I’ve been told that I’m egotistical, as if I am the one seeking global domination and rule. I’m not. I’m a lousy person to even lead a subpart of a movement, and I know that. That’s why I’m not part of leadership on any autism-related organization - there are better people than me for that job.
I’ve already talked about the “segregation” and “equality” aspects. I don’t expect to choose the French parliament members, but I don’t consider France to be spreading inequality because they don’t give Americans a vote! I also think it’s perfectly possible - even without a vote - to be an ally of the French people.
I’ve also been told that I define autism by psychological terms, rather than social terms, because I insist on autistic people being the source of direction (which I note is a view that Larry and Kevin both share). I don’t believe in that way of dividing people, and in fact I’ve written much about it, including publicly challenging some autistic people who tried to eliminate much of the voice of the autistic community. I’ve never opposed the idea of allowing anyone who identifies as autistic - for whatever reason - to be considered an autistic, and to have a voice just as loud as mine or any other autistic. In fact, I welcome it. That said, people that don’t identify as autistic should not, in my opinion, be afforded the right to represent us - because being autistic is a social construct, not a diagnosis.
Others have assumed I want every ally that is doing a good job in advocacy to pack up shop and leave work undone. Of course I don’t want that - I believe, contrary to opinions of some about me, that every true ally is essential to our cause. I have no problem with the concept of allies. But, I also agree with Phil Schwartz’s description of what an ally is. Any ally that meets Phil’s description is worth having in this fight, and I have no problem with ANY ally that meets Phil’s description.
Yet others have assumed that I don’t want parents to parent their children, or speak for their children. That’s not true - they need to speak up, and fight for services, education, employment, and basic life requirements for their kids. I would hope - and don’t feel it’s too much to ask - that they would seek out the opinions of autistics on these issues. That doesn’t mean giving up the right to parent, or the ultimate responsibility for their child - far from it. I’ve always been very clear on my views that parents know their kids better than even another autistic does. But in advocacy, outside of the proximate needs of the child, I suggest that parents, even here, need to listen to autistic people. Is that too much to ask?
Once again, I’m not suggesting that autistic people do everything themselves. I am suggesting that for the overall direction - the “goals” that is (although certainly not in a rigid, written-in-stone form!) - come from autistic people. That’s the leadership I’m talking about. Things like: “Is a cure a good thing?” “Is behavioral therapies required?” “Is autism so terrible that a cure-at-any-cost approach should be used?” Autistic people should answer these questions. I’m not talking about an organization or the Autism Hub or any other such nonsense though, I’m talking about the unorganized, non-heirarhical group of autistic people as a whole - and what overwhelming consensus emerges from this group (even if that consensus differs from my desires, I support this process, as I believe autistic representation is far more important than Joel getting his way). Allies should listen to us, and, if they can agree, partner with us. If not, they shouldn’t claim to be our allies.
I’m not talking about preventing any non-autistic from making decisions and engaging in actions without getting an explicit “OK” from autistic people. If your decisions and actions support us, continue to recognize us as the “goal setters”, and follow the ideals that autistic people as a community believe in, then, by all means, do whatever you want! I’ll support that.
I’ve also been told that I’m manipulative - a common word, ironically, from institutions and other places of abuse, which is used to dismiss any form of self-advocacy. Of course I want to get my way - I feel very strongly on this issue. And, yes, I’m going to try to persuade people to agree with me. Who doesn’t do that? But that said, what I’m advocating for is equal representation of autistic people, and the ability for autistic people to set their own destiny. Yes, we live in a larger world than autistic people, and we need to change that world. Yes, we’ll need help to do that. But, no, we don’t need others setting the goals. That’s the issue at hand. It’s not the Autism Hub! (I clearly can’t say this too often, because the idea that I have a problem with the Autism Hub keeps getting attributed to me, when I’ve said no such thing)
So, if you’re an ally, and you follow Phil’s description of what a good ally is, I think you’re doing an awesome work, and beg you to continue in the fight. If you don’t follow that, then you aren’t an ally. I know that’s harsh. I’m sorry about that.
Before you criticize me, I beg you to read what I write and look at how I’m using the words “leader”, “represent”, “movement”, “speak”, etc. I’m not using them strictly in a firm, rigid, hierarchical, authoritarian sense. I’m not about building an organization, overthrowing the Autism Hub, or whatever other beliefs have wrongly been attributed to me in the last few days.
I also beg people to not use disagreement as an excuse for abuse, in whatever form. It has a deeper effect than you might think. (Source: NTs Are Weird) | | Category: | Autism | | Link Owner: | | | Date Added: | June 17, 2007 04:51:26 PM | | Number Hits: | 0 | | |
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