4:17pm May 27, 2014

"And also if you think everyone who is wrong about something important is completely irredeemable…"

(That’s a quote from patterns maybe in a different post, I just wanted to make my own post about it.)

Be aware that, including this one, I try to tag long posts with #long and/or #long post in case you have trouble reading them. I have trouble reading them. I can’t even read this post to look it over. I can write long, can’t always read long. Read worse after writing long.

Anyway… I really used to think that.

I especially used to think it about issues that were, or seemed, to be the most important possible issues to be dealing with.

Someone recently replied to one of my posts. I had said that there are autistic people out there who have done amazing things for autistic people’s human rights… but who supported the idea of curing autism. And how such people are not really acknowledged in certain parts of the autistic community, because the definition of autistic self-advocacy in those communities has become completely bound up in ideas like “opposing a cure” and “supporting the idea of neurodiversity”. So if they’re acknowledged at all, it’s in a negative light, no matter how much they’ve done in other areas.

And someone replied telling me in detail what a cure would mean. I actually knew, in detail, what a cure would mean. I was opposing the idea of curing autism as far back as 1999, when far fewer autistic people were against a cure. I was one of many people who painstakingly worked to explain to people what a cure would mean in practice, including eugenic abortion. I’m not unaware of how destructive a cure could be. I’m not unaware that autistic people – especially people like me who are on government assistance – would likely not be given a choice whether to take a cure or not. I know these things. I helped write down some of these ideas before anyone else was writing them down. It’s not my ignorance of what a cure would mean, that makes me say what I’m saying.

Anyway, the person who replied (and I’m sorry for putting you on the spot – if it helps, I don’t remember who you were) told me that because of all that, they could never accept an autistic self-advocate who supported a cure.

And their response reminded me of how I used to think about these things. But it also reminded me of how hard it is to accept differences of opinion when those differences pose a threat, or even seem to pose a threat, to who you are, on a fundamental level.

I have extremely strong opinions about euthanasia and assisted suicide. I will not get into every detail of them here. But I basically believe that any time these things are even slightly permitted, it is a disaster in the making for disabled people. The ideas that lead to euthanasia and assisted suicide, have already made appearances in my own life that could have led to my death. I have really strong, well thought out, important reasons for opposing the legalization of euthanasia or assisted suicide. They’re not religious reasons (not that I think religious reasons for things are always useless… but everyone always assumes opposition to euthanasia has to be religious, and in my case it’s not) and they’re not mindless repetition of something I’ve heard somewhere. I’m not being used by the right wing to further their agenda. I have thought about this, I have seen things happen to me and others, I have really fucking good reasons for never wanting assisted suicide or euthanasia to become legal in any capacity anywhere.

I also have an online friend who watched a close relative die in agony, begging to be killed, who I think I remember that they support some level of assisted suicide as a consequence. (I know that they’re aware of all the reasons I oppose it, I think they still support it to some degree. Although I know that neither they nor I have an un-nuanced view of either side.)

I think I would be a horrible friend, and a horrible person, if I totally wrote off my friendship with them based on this difference of opinion. If I just decided “This is a horrible person, they support something that is a threat to my life and the lives of everyone I care about. I can’t be their friend. I can’t do activism with them. I can’t acknowledge the good of any activism they do. Or of anything else they do. They want something that is so dangerous to me and mine, that I just can’t stomach their existence or presence around me.”

There was a time when I might have reacted like that, though. In my early to mid twenties, the issue of assisted suicide was like an exposed nerve, for me. If anything touched it, I felt like my entire body was on fire. I’d freak out, shut down, melt down, sometimes slap myself on the head until I blacked out. If I learned that someone supported it, I had to put up a wall in my head in order to even be in their presence, and that left me drained as hell.

I feel ashamed. I love my friend. I feel ashamed that I would have ever cut them off over something like that.

But it’s so easy to do.

And it’s so easy for a community to reinforce that exposed-nerve state around any given issue.

I don’t know if I think my friend is wrong. I can’t say that they’re wrong to have wanted something different for their relative. I do feel like it’s wrong to make something legal that could kill people. But I hate the fact that I live in a society that makes it so that the only way to protect people from dying unnecessarily is to keep assisted suicide as illegal as possible, even in instances where someone’s literally on the brink of death and in horrible torturous pain. I hate that I have to weigh up in my head – on the one hand, people dying in awful pain – on the other hand, people dying long before their time in ways that could and should have been prevented. I always come down on the side that says that the second option is far worse. But it doesn’t mean I like being forced to make the choice. And I know my friend doesn’t like being forced to make the choice either, even if they come down on the opposite side sometimes.

If I can accept that some people who do really important work on behalf of human rights, are people who promote a practice that I am certain can and does kill lots of people just like me. Then it should be possible to accept that some amazing autistic self-advocates want to be cured of their autism.

I wonder how much activism it would take to tip the scales for people.

If someone singlehandedly got the Judge Rotenberg Center closed down, would that be enough to offset the fact that she hates being autistic and wants a cure more than she wants anything else in life?

Would it take more than that?

Less than that?

Would any amount of good done for the world, or for autistic people in particular if necessary, ever be enough?

Why do I think about these things?

What is it that makes us think this way?

I think I’m figuring some things out.

Part of this is an expectation of perfection among activists.

That is – there’s a list of issues that activists are all supposed to agree on before we can be good activists.

The list is different in different activist communities, but a lot of activist communities have them. (Especially the ones that tend towards being echo chambers. But not only those.)

And the list can have different things weighted differently. In large parts of the autistic community, the cure issue is rated the highest. As in, sometimes all it takes to call yourself an autistic self-advocate is to oppose cure. I remember being around an autistic self-advocacy group that was trying to… network or something… and part of it involved the self-advocacy groups they were networking with, making them sign pledges to support ‘neurodiversity’. Which scared me a little.

Because neurodiversity… first off I don’t fully understand the word. I think I support what it basically means. But not everyone does. And not all self-advocates do. And they can still be doing important work without basically supporting a certain abstract concept thought up by one segment of a community.

Anyway.

So there’s this idea of perfection.

And I think that idea is very dangerous, and people don’t even realize they have this idea. But the idea is that activists basically have to be perfect. Have to know the rules. Have to have certain values. Have to not have other values.

Deviation from perfection isn’t allowed.

Even little deviations isn’t allowed.

So like… there’s people who support a cure, and people who are totally anti-cure. But there’s also people who have viewpoints that aren’t as clear-cut. They might support a cure except under certain circumstances. They might wish that they could be cured, but not support a cure in practice because of what it would do to autistic people who don’t want a cure. They might define cure differently than most people on either side define cure. They might support cure in some contexts and not others. They might have really detailed opinions on cure that would take an entire book to really explore in depth.

And if you’re in the most intensely anti-cure parts of the autistic community, then most of the time you’re only allowed to be straight anti-cure, you can’t be any of those other things. Even ones that deviate from straight anti-cure sentiments only slightly.

And if you try to tell people what you believe, then the moment they hear a deviation, their minds turn off. Sometimes their minds just turn off and they won’t hear anything else you’re saying. Sometimes their minds turn off and their emotions skyrocket and they run over you verbally like a bulldozer.

(I know because I’ve been that person whose mind turns off. None of this is written fully from the outside.)

So they don’t hear what your opinion actually is. They hear that it’s different from the party line, and then they imagine all the rest, and think that’s enough. They don’t know that you might agree with 90% of what you believe on the matter and disagree on only 10%. For them it’s 100% or 0%. And 0% is bad.

Anyway.

I think there’s something very dangerous about this expectation of complete perfection among activists.

I can’t pinpoint what it is, but it feels like a kind of very destructive violence that prevents work getting done.

I know that it prevents people cooperating who could easily cooperate.

And cooperation is very important to getting things done in the real world.

Because there’s only going to be a limited number of people who agree with you on an issue in the first place.

Let’s say there’s 100 people who want to close down the Judge Rotenberg Center and have the time and energy to invest in doing really hard-core serious work on the matter that could very well get it done.

Now let’s say 70 of them support a cure.

Parts of the autistic community would reject those 70 people, drastically reducing their numbers down to only 30 people who could work on the issue.

And it gets worse, because there’s other issues that are also given a really heavy weight. And by the time you’re done, you might have only five perfect activists who believe all the twenty different things they’re supposed to believe.

When if you look at the twenty different issues, there may be hundreds of people who could work together on each issue, if you took each issue singly and then ignored views on other issues.

But this doesn’t mean that I think you should ignore everything, mind you. There are things that put someone so far beyond the pale that even if they’d make an amazing ally on a particular issue, you still have to say no.

I’ve pissed a lot of anti-quackery people off. Because there’s a woman who left Autism Speaks and is in a great position to be an advocate against quackery in autism, and in fact is making connections with a lot of anti-quackery people I really respect in other ways. She has connections, she has credentials, she has charisma, she has an autistic child.

She also made a video in which she said, in front of her autistic daughter, that she had seriously considered driving her daughter off a bridge and only didn’t because there was a normal child at home. She said this while her daughter played in the background. She said this on video. When the video came out, there were two murders of autistic children within the two days afterwards and another soon after. I remember each one vividly. Then the video was used by the murderers, and supporters of the murderers, to defend their actions.

This woman has never truly apologized for making the video. She has never taken in the scope of the damage her video did. She has never taken responsibility, even partial, for the deaths of those children and adults, or for the way in which her words were used to defend murderers.

On the contrary. She has repeatedly described it as being about being “suicidal”, totally neglecting the homicidal component as if killing your child is just part of being suicidal. She has blamed autistic people for “judging” her for her part in that video. And she has done absolutely nothing to set right the wrong that was done in her name.

If she understood what she had done and wanted to make it right? At minimum, I would expect her to publicly denounce anyone who used her video to support murderers. At minimum. That’s just the bare minimum I would expect from someone who thought they were talking about suicide and didn’t realize how people would use it.

But really, the minimum that I’d take as really meaning she grasped what was going on? An ongoing commitment to end murders of autistic children. A public apology to her daughter. An apology to the people (and the families of the people) who have died as a result of the video. An ongoing commitment to educate people that talking about murder is not a way to get more services for autistic children – that doing this is effectively holding autistic people hostage, saying “we’ll kill them if you don’t give us services for them”. There are so many things she could do to make this right, if she realized the impact she’d had, and wasn’t intent on feeling sorry for herself about how people have 'judged’ her for what she said.

I would work with her if she’d done at least half of those things, if she showed any awareness at all of the impact of her actions, if she were doing something other than blaming autistic people for being pissed off and terrified by her. But I can’t work with her as is. Because some things go too far. And that went too far. I firmly believe that she has no idea how much damage she has caused and that she may never understand. But if she did understand, if she were trying to make a change, I would work with her in a heartbeat.

So I’m not saying there’s nowhere you can draw a line and say “It’s impossible to work with this person.” I won’t work with serious bullies and stalkers either, and I get wary of people who will.

But.

Be really careful where you draw that line.

Because if you really want the numbers. If you really want as many people helping you on an issue as you can. Then you have to focus on that issue, and you have to make sure as few other issues are deal breakers, as you possibly can.

So if I’m trying to close down the Judge Rotenberg Center then I don’t care if you want a cure, I don’t care if you think facilitated communication is real or not, I don’t care if you believe in functioning levels, I don’t care if you think that Asperger’s isn’t really autism.

If I’m trying to work against a cure, then I care what you think about a cure. But it doesn’t have to be black and white. Maybe you personally wish for a cure but you still want to work against the idea of a cure in general, because you think in practice it would be horrible. If it’s good enough for whatever work we’re doing together, it’s good enough for me.

And I also think that diversity of opinions is important in general. Even within people who have broadly the same opinion, there are many ways to hold basically the same opinion. And it can be important to support people in expressing those many ways of holding that opinion. And it can be important to look at why other people hold different opinions.

And to me it’s especially important to look at how many different opinions are out there. Because it’s very rare that there are only two sides to an issue. And it’s very dangerous to think there are only two sides to an issue.

When there’s an opinion that lots of people in your echo chamber share, you may be totally unaware of how that opinion affects people outside that echo chamber.

I have life experiences that were not taken into account when a certain community was forming its opinions. The community formed its opinions largely based on the life experiences of people who had specific, significant differences from me and people like me. The opinions that are now gospel truth – untouchable, unbreakable, unquestionable – in that community? They cut people like me into pieces like a knife. They do horrible harm. And they have no idea of this, because their echo chamber was formed without people like me in any position of leadership.

And the opinions in question are ones that are considered vital to certain members of that community. They’re considered so vital that breaking with them even slightly is considered a terrible attack on certain community members. Because they think the only reason a person would break with them are… bad reasons, basically, other reasons, reasons very different than the way people like me break with them simply by existing.

And that’s a danger when you form opinions that have sharp edges that cut like knives, and say that any violation of this opinion is going to do you a terrible harm.And this is what happens when you write off anyone who differs from those opinions, so that you can’t even learn why they differ, or how they differ, or even if they differ that much at all.

And I would say more, but my brain is starting to go all flashy from all this writing, so I’m going to stop here. I hope that the ideas I’m trying to get across are clear. Because I can’t even read my own writing anymore, I can’t read this post, so I can’t know whether it makes sense, or whether it covers everything I meant to cover. I don’t even remember what I meant to cover, there’s just lightbulbs flashing in my head and a purring cat on my lap and that is all.