What a total non-apology.

I’m not generally one to throw a blog post out there every time someone uses a disability slur. But the way this was handled is just pissing me off on multiple levels.

So a politician named Rahm Emanuel decided to insult a bunch of political activists by calling them “fucking retarded” when they didn’t agree with him on something.

Then when he realized this was going to get out, he called Tim Shriver (CEO of the Special Olympics) to apologize. This apology was apparently accepted. Newspapers are calling this an apology to the disability community.

Here’s where my brain’s starting to stall on me coming up with the language for it.

He didn’t apologize to the people the insult was aimed at.

Argh brain splitting up into pieces.

He apologized to Tim Shriver only because Tim Shriver has power and political clout and could have made his life difficult. Not for any other reason.

The slurs “retard” and “retarded” are used mostly on people with (all sorts of) developmental disabilities. If he were going to apologize to the people the terms are actually used on, he would have apologized to one or more of us, or all of us collectively.

Worse, Tim Shriver has no authority whatsoever to accept apologies on behalf of even one of us, let alone the whole of us collectively. He doesn’t even have a developmental disability, he just runs one of those primarily “of the nondisabled, for the disabled” sorts of organizations. While nobody can speak for all of us, if he’d really wanted to apologize to us, he could have started with apologizing to the heads of self-advocacy organizations. Even they couldn’t accept apologies on behalf of entire communities, but they’re closer to it than Tim Shriver is. (And why is it that when people think of DD people their minds always jump to Special Olympics?) And yet the newspapers seem to be totally buying it without even questioning. HELLO EVERYONE, WE’RE OUT HERE! REALLY!

This is just multiple layers of wrongness all piled up on top of each other. If I’ve missed one of the layers, it’s because this is really stretching my brain to write this and it hurts. Suffice to say, there haven’t been any genuine apologies going on here, to anybody. But if it’s wrong to use a slur and you genuinely want to apologize, then you have to apologize to the people the slur refers to (and directly to us, not to the most powerful person you can think of who “works with” us but isn’t one of us), as well as the people you used it on. No matter what you think of either group, if it’s wrong to use a slur then you can’t just throw a half-assed apology vaguely in the direction of someone sort-of-connected (but not actually a member) to one of the groups in question and just leave it at that.

To be finally free from entanglement.

It has been a long time, longer than probably anyone but my closest friends could guess, since I have felt comfortable being on the Autism Hub.

It was okay at first. It seemed to be similar to a blogring (anyone remember webrings?), a place where links to various blogs were collected by someone I barely knew who happened to like those blogs a lot. But then it became a community.

Online communities can be good things, but they’re complicated. They seem to sprout cliques (which start out innocently as groups of friends then harden their walls when conflict occurs), feuds, and drama faster than my head sprouts hair. Often faster than I even notice their existence. And then things get even more complicated. People have arguments that mysteriously seem to line up with the same sets of people on each side most times no matter the topic. Other people start insisting that since we’re all in the same community, we’re all really on the same side — since we supposedly all want the best for autistic people (even if it’s clear we don’t all, and even when people have totally opposite ideas of what “the best” is). Communities of this sort often come with massive strings attached.

I do want to make a few things clear though: I have friends in this community. I have people I agree with in this community. (Those two groups are [gasp] not identical! Would that more people understood that.) I have people I respect greatly in this community. I don’t respect them any less for remaining there when I leave, that’s a personal choice everyone has to make for themselves.

I am leaving the Hub (whenever Dave gets my email or reads this) but not leaving for want of those things.

I am also not leaving because I have changed my views on autism or disability. I am leaving in part because of those long-held views. Not leaving because of any recent events, in fact I have remained oblivious to most events recently due to lack of time and energy (if had more energy would left sooner). Certainly not leaving because of any one event or person.

Why am I leaving then? Half of it has to do with the complications of this kind of community and a desire not to become entangled in the strings attached. And half of it has to do with the long nagging of my conscience and ethics.

Review of something often point out: I am not primarily an autism blogger or a neurodiversity blogger, not in my mind anyway. I am a person who operates from various (not widgeted so there is no good name for them, this not being a putdown for widget-users but my inability to do more than rudimentary widget-work) ethical principles and applies those throughout my life, some of which involves blogging about events in my life and the world around me, from that particular point of view.

I usually deal with disability rights topics. I have noticed that people with cerebral palsy who blog from disability rights standpoint about events affecting them and other people with CP are not called “CP bloggers” at anywhere near the rate that autistic people doing the same get called “autism bloggers” (in fact when I google “CP bloggers” I find mostly stuff about Club Penguin, whatever that is). On the other hand, I can make an entire video dedicated to a girl with CP trying to say the way she and I (and many sorts of disabled people, and nondisabled people who happen to come from nondominant cultures, etc.) have been dehumanized on the basis of our way of communicating and interacting with the world, is incredibly wrong. And end up on television represented as if the film is about letting people into “my world” of autism (which is something Sue Rubin said about her film but I never said about mine, in fact voiced strong objections to that whole idea). [headdesk]

So to me, I am primarily an ethical blogger, or a political blogger, depending on your definition of political. Possibly even a disability rights blogger even though that’s still not the entirety of my point. Not primarily an autism blogger. So while I do happen to want the best for autistic people that is too narrow to be considered central to my reason for blogging or my de facto membership in a community that used to just be a blogring at the time I joined it. And I guarantee that my idea of what’s best for us is totally different than a lot of what I have seen on the Hub.

I have seen ableism running rampant all over this community. I have seen those who try to counter this ableism, be they blunt or diplomatic, treated as if just making trouble or being mean. Although the blunt ones are treated worse, in yet another stunning display of ableism (gee, autistics, blunt? Who would figure?).

I have seen vile hate speech be more readily allowed on parts of the Hub than the non-hateful speech of autistics (and even some allies) who simply disagree with people in those parts.

I have seen all manner of pseudo-allies as well as fair weather allies who retreat into their privilege and leave autistics hanging when the going gets tough.

I have seen people who are on the Hub for primarily scientific reasons whose ideas about actual autistic people range from inaccurate to degrading and patronizing. I have seen parents do the same. I have seen autistics get treated terribly for pointing this out. The old power structures — professional over parent, parent over autistic (recognizing that this is simplified because any one can also be any of the others) — still hold strong on parts of the Hub.

I have seen a lot of medical model ideas floating around. I have seen people treating the education of autistic people as if it is therapy. Even people promoting so-called treatments of autistic people, that are identical to ones some of the autistic Hub bloggers were harmed by as kids, but if we say something we are either ignored or patronized and treated like we just don’t understand.

I have seen “biomed” become the latest in a long series of different “bad guys” who are supposedly the opposite of “the neurodiverse”. Even though there are “biomed” parents who do a better job of understanding and fighting the societal forces that make the world such a nasty place to be autistic, than some Hub parents who seem to all but embrace those forces.

(I know some biomed stuff is terribly dangerous and needs opposing. But on the Hub it’s turned into good guys and bad guys and I don’t believe in good guys and bad guys. The world is more complicated than it looks in this community sometimes. I don’t like being in close proximity to these distortions.)

And for that matter the whole cure topic gets oversimplified the same way. While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did. I have worked right alongside people who want cures (some of whom even did “biomed”), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on. And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

And I have seen a lot of personal fighting that may once have had a point but now seems to just go endlessly in circles. If I am going to fight for something, I want it to be something that at least makes progress in a useful direction. Comes from not having much energy to spare.

I am not interested in going into who did what. I don’t even care who does these things, I just care that they are being done. I won’t answer or print any comments going “Is it me?” or “It is me and you are attacking me.” Or anything similar. That is just point-distraction.

I still have limited time can spend on the Internet and limited time can read and write on blogs. Have found that I no longer even wish to allow the pretence that I am part of this community. General-sense disabled and autistic communities, maybe, this particular little community, no.

Again, my viewpoints haven’t changed, my friendships haven’t changed, my people respect (including some I have criticized) hasn’t changed, and I don’t even think would necessarily be a good thing if the Hub didn’t exist. I just had to get out, for reasons that are entirely my own.

I know this decision is the right one because it feels like freedom rather than entanglement. It feels like being able to think again. It feels like breathing after long suffocation.

Or as Anne put it in her blog post about cutting her ties with the transhumanist subculture:

And I don’t have any problem being friends with someone who still calls xyrself a transhumanist, or engaging in respectful discussion with such a person. With very few exceptions (e.g., Nazis, Raelians, Amway salespeople), I don’t care a lick what someone’s associations are — I am very much about taking people on their own terms, probably to a fault.

[...]

I’ve just realized that I don’t owe anyone anything for having the interests I have, nor do I need to be a “member” of any transhumanist organization in order to have the kinds of interesting discussions that I’ve always been interested in having.

If that’s somehow not okay with you — well personally I don’t care, but you might want to seriously examine your thinking. I can’t survive cognitively in environments that force everything into false dichotomies, and nobody should feel hurt, slighted, or bitter because of my doing what I need to do for the sake of being able to actually use my brain.

And that says it all.

update: Friday Protest at MPP’s office and CCAC, and Minna’s eating again for the time being

I don’t know anything other than having received the following notice, but it seems like a very good sign. The notice I received contains places (far better than here) to get updated information:

We Are Protesting:

FRIDAY JANUARY 23rd from 8AM until NOON in front of MPP Rick
Bartolucci’s office located at 93 Ceder st, corner of Ceder and
Lisker, the Canada-Broker Building.
Then at NOON we are Marching to the Community Care Access Centre
which is located in the Rainbow Centre 40 Elm St, Suite 41-C the
north east corner of the mall at the corner of ST Anne Rd and Notre Dame Ave.

For Further and Updated Information:

Facebook Group: Minna’s Hunger Strike – Call to action for an ALS patient denied care

The Sudbury Star article

Youtube: Sudbury CCAC Exposed

Have also received word that Minna is eating again for now — but that doesn’t mean the situation is resolved by a longshot, it just means she’s not for the moment starving to death, she’s “just” totally lacking in all other aspects of necessary care. (Which is terrible enough as it is.)

Check those other websites for continuing updates, since they’re far more direct than looking here to see if I’ve found out anything yet from a distance and had time to blog it.

Information isn’t power on its own, unless it’s used in the right way.

First an explanation, as much as I can give, about the current situation and why I’m not blogging a lot:

I haven’t had either much to blog about or much capability of blogging lately. Mostly due to not having any time or energy left over, after a bunch of serious offline responsibilities, to take in more information and figure out what to do or say about it in any sort of public manner. I don’t like to post online just for the sake of posting. And I don’t have an ounce of energy or a second of time to waste, I have had to become much more streamlined than I already was. Which was pretty streamlined already.

I also don’t believe in saying anything when I have nothing to say, or when I don’t understand what I’m saying (that habit, which was once a survival thing, has long outlived its welcome and has harmed far more people than just me, and I’m sorry — and I do my best to avoid it at all costs, since nothing good ever comes of it). I do believe that in order to be able to do anything useful, I also need time when I’m not doing public writing, or a lot of public reading in a particular area. This is a brain thing. It works that way and I’ve never been able to stop it from doing so.

My ability to use language has always outstripped my ability to understand it, so more than most people I know, I really need a lot of seemingly unoccupied time to just figure out what’s going on around me. Eventually all the information settles into the back of my head getting more and more detailed as time goes on. Then, eventually, some event triggers a response that uses that information. Can’t pull that response out on purpose, it’s just wasted effort. And I now refuse to just repeat what someone else wants me to say (and I have had a lot of people tell me I really need to publicly talk about whatever their pet subject is, but since I can’t understand them, and/or can’t form words around them, then I can’t say them, end of story). But it will eventually show up when I’m least expecting it.

So some events today have triggered one of those responses. Don’t expect other responses forthcoming just because these ones exist. I still have from no time at all, to at most, two hours of ‘uptime’ for things like this per day, and that’s how it’s going to be for the foreseeable future. If anything takes up too much of that time with no useful return (and I’m the only one who can judge that against a lot of other things that are very important), I’m just not even going to respond. The stakes are too high, and that time is in too much demand already for other things. This is how it has to be, and it’s why I’ve taken on few to no online responsibilities lately.

Also, as I’ve noted many times before: Don’t assume this is about autism. I’m an autistic person, it doesn’t mean that everything I do or care about centers around autism and autism alone. As was pointed out to me again recently — I’m a person who applies values and skills I already have, to autistic people’s situations, as well as lots of other situations I happen to come across. Nothing about the world I currently inhabit has little walls around an “autism section” that I have to stay in.

Anyway, blogging is a way of getting information from one person to the next. It’s one of many ways, but it’s a way to do that. Getting information from one person to the next is a good thing as far as it goes and as far as it’s useful.

But it’s not the only thing required to actually get something done.

Right now, though, my problem is less with bloggers (since I figure, like me, they might be doing a whole lot in the offline world that I can’t see, and I know that, like me, many disabled people find themselves only able to do this stuff), than with organizations.

I’ve seen a lot of organizations in my life. I’ve tried to take part in a lot of organizations in my life. And I’ve gotten pissed off at a lot of organizations in my life.

Because a lot of people seem to think that all you need for an effective organization is some combination of good intentions, a nice website or office, nice letterhead, a board of directors following some utterly standard model of non-profit setups, some money, some office skills, and some means of getting information passed around between a lot of people (conferences, leaflets, newsletters, articles, little booklets, weekly meetings where people sit around and talk, etc.). Bonus points if you can find any rich or famous connections and hold fundraising events. Maybe some trendy liberal protests too, where you can hold up your sign that has nothing to do with the actual substance of the protest (if there was any).

And everything — everything — eventually boils down to that act of passing around as much information — especially proper information — as possible. And, how could I forget, lots of mutual ego-massaging, patting oneself and everyone else around you on the back just for being there.

It’s an entire culture. And it’s a culture I have tried to work within at times because sometimes it’s at least marginally better than doing nothing. But it’s a culture I feel immensely out of place within.

Because it’s empty. Scratch the surface and all the fluff just starts falling apart. There’s nothing left when you really need something done.

I’m one person, with limited mobility, limited energy, and limited time. But if someone asks for my help in an advocacy context, then I will do everything I can to actually help them in some sort of concrete way. The same as I would want if I were in their place. If I can’t help them, I will try my best to find someone who can.

And there’s the problem: Where do I look if I don’t know anyone personally?

I try to find groups of people who are united around the same problems that are happening to the person right then.

And most of the groups I find… they’re not into anything practical. They’re into passing information around in circles, and being very happy with themselves for doing so. And being all proud and weepy-eyed about its mere existence, which mostly just feeds people’s complacency, the same complacency that causes the scandalized growling of “We’re already doing something for you people just by existing, now leave us alone.”

(And thus, many people with far more time, energy, and power than I have, end up failing to use it at all for anything other than reciting the names of other organizations to people (with a hopeful “let’s get this person out of our hair” air), or repeating that, say, if they’re homeless, then a box of pamphlets on how to cook with equipment they don’t even have, would be just as good as a box of food. Wish I were exaggerating.)

The problem in most situations where immediate practical advocacy is needed, is not information. Yes, information is often necessary. No, information is not bad, in and of itself, it can be a very good thing. But it’s a means to an end. It’s not the end itself. The problem in most of these situations is things like power, money, and resources. Not endless workshops, pamphlets, and meetings about how bad the system is, with no actual move towards holding the system accountable for their actions and finding ways to get them to do the right thing.

And I’m in yet another one of those situations. Someone needs practical help navigating this mess, from people who are experienced in actually fighting against all kinds of injustice. But all I can find are these shiny feel-good liberal organizations who, as a friend put it, “…you, me, and [Jane] are too unimportant to be anything other than nuisances to them.”

(And I’ve found that even in organizations that somehow I’m now considered, usually by virtue of CNN or something, important enough to matter to, most of the people I care about aren’t, and are treated quite differently by them than I am. At least to my face. This is frustrating — I can still usually smell the scent of pseudo-organization on them, but it’s no longer as immediately obvious in their treatment of me as when I used to be nobody important to them. So I don’t always get the warning as fast or loud as anyone else does.)

It’d be nice if organizations were groups of people who all, individually, were involved as continuously as possible in making various things happen on a real-world level on a regular basis. And who came together to become more effective in numbers or in diversity of skills, or to learn from each other how to get things done in the real world, even how to use information to make real things happen for real people.

But most of the time they’re just groups of people who all decided one day “Hey, wouldn’t it be great to start an organization dedicated to our pet cause?” And who thought that starting an organization was the same as doing something. And it’s not — no matter how much money, love, dedication, information, and good intentions are poured into an organization, having the organization is not doing nearly enough.

I’ve said that in enough ways, and used up enough of the time that I’ve got to say it within, that I’m going to just leave it at that, even though I haven’t described everything I wanted to. I’ll now return to the regularly-scheduled silence for awhile unless some other situation leaps up and demands to make its way out of my fingers. I haven’t dropped off the face of the planet, just most of my life is not, and can’t be, online right now.