Theme
2:01am June 11, 2014

karalianne:

When I went to AutCom in 2007 and met youneedacat and sherlocksflataffect in person (and other people too), I hit it off immediately with sherlocksflataffect. Like, they kept me with them during the big group stuff like meals and showed off their scars and invited me to do deep pressure.

And the whole prosopagnosia (face blindness) thing really clicked for me on the second day when I walked into the conference with my friend (who hadn’t been able to come the first day) and saw sherlocksflataffect in the lobby of the hotel. I waved and greeted them and said, “Hi! How are you?”

And they looked at me and replied, totally straightforwardly, “Faceblind, how are you?”

I was wearing different clothes, which probably wasn’t helpful.

And I didn’t feel stupid for not identifying myself right away or anything like that. I was actually grateful for the reminder that not everyone can recognize people on sight, even if they just saw each other the day before. So I believe I said “Oh, sorry, I’m Janna.” And then I introduced my friend, and then we were good and the day proceeded.

I know I’m different from most non-autistic people in that I actually prefer blunt communication. I like it when people tell me what they really mean without being subtle. I don’t like it when people are rude (I believe it’s possible to be blunt without being rude) but blunt? Yes please.

Just a random story cuz I saw the post about what faceblindness is.

My favorite part of that was discovering why women travel to the bathroom in groups.  Not that all of us were necessarily women, but we were people who needed to use a women’s bathroom. 

I ran in there crying and shrieking and bashing my head on the wall.

CNN stood outside recording my every scream with a big mike while Kathleen Seidel screamed at them and they lied to her about the mike not being on.

Then all these AC women came in and found me and comforted me and we sat underneath the sink together and had a piss-and-moan session about the people who’d set off my meltdown.

And it was one of the most perfect social experiences I’ve ever had.  And one of the most ‘normal’.  And it was entirely with autistic people and cousins (and no differentiation being made between the two).

Another great social experience was storming out of a talk where a woman was saying stuff like “and you can tell the MMR kids because they’re so low functioning they can’t do anything…” in a conference where a fundamental rule was to presume competence.  I was in a manual chair and couldn’t push myself.  So I turned on my communication device as loud as it went, and asked if anyone would please push me out of there because I couldn’t tolerate hearing one more word of this bullshit.  And Joel and sherlocksflataffect instantly and loudly volunteered to be only too glad  to help me get out of there, and we all stomped and huffed up to Kathleen’s room where she saw us all incoherent with rage and had to get us to slow down and explain what happened.

Strange that my favorite social experiences at that event all involved storming out of places loudly.

But it wasn’t the storming out loudly that made them good.  It was the support I got from other ACs who knew just how I felt and I didn’t have to explain a damn thing to them.  We could just piss and moan about it until we were through pissing and moaning, because we all knew what the problem was and there was no need to justify or explain anything.

But there was also the time that I was able to let sherlocksflataffect borrow my wheelchair, because everyone assumed that her being ambulatory meant she could walk all the way down the hall on a broken foot.  And that was important because that’s the sort of thing people should be doing.  Nobody should ever expect another disabled person to loan them a piece of adaptive equipment, and at Autreat I ran into a really annoying person who insisted on trying to manipulate me into letting her take my chair, and she also stole it away from me a few times to go joyriding, and that was not cool.  But one disability tradition I find very important is that in a pinch disabled people will help each other even if it means doing things that people don’t normally do for each other.

I have wiped the asses of people on their periods who just had massive diarrhea and couldn’t clean themselves up.  Because that’s what you do, if you can.  Because the alternative is to let them sit in it, and if you’ve ever sat in it yourself, it’s unthinkable to let that happen.  I’ve had my ass wiped by others in similar situations.  I’ve given people vaginal suppositories when they had yeast infections.  I’ve taken near-strangers to the bathroom because they couldn’t push their own wheelchairs and we were both in the same disability program and I was the only person around for the job.  I’ve done all kinds of “intimate care” stuff to the point where I don’t understand why it’s such a big fucking deal for most people.  It’s a necessity, you do it, then you move on, you don’t wallow in how disgusting it is.

I do understand there’s people who can’t do that for reasons that have to do with disabilities, including psychological disabilities, and that’s also fine with me.  I would never force someone to do something for me, nor do I appreciate people trying to force or manipulate me into doing things for them.  (Especially in situations where it becomes clearer and clearer that the only reason they are saying anything is because they think it will get them closer to their goal of getting my wheelchair out from under me and under them instead, for instance.  Including contradicting themselves a million times in the course of the conversation.)

But to me – this is a vital part of community, including disability community.  You help each other.

The way I put it, the most often – I know what hunger is.  And because I know what hunger is, if you came to my door hungry, I would share my last can of beans with you.  Because I know what hunger is.  And even though I would be a little bit more hungry, you would be a little bit, maybe a lot, less hungry.  And that’s what matters.

Community is about caring for each other, and often the was we can care for each other are in serious, tangible ways.  These are some of the most important ethical values I have ever learned about being a social species having to survive together on this planet.  My family taught me that when a family members needs help, you help them, even if it’s hard.  Maybe it’s just part of our culture.  People who come from poverty often develop values like that.  It helps people survive in awful situations.  The rich often imagine that we would behave like they do, scrabbling for the last box of oatmeal.  And yeah, that can happen.  But lots of poor people also take care of our own because we know nobody else will.

So in any community, I gauge how much of a community it is by how much of this caring is taking place.  How much are people helping each other out in tough times?  How much are people doing things for each other that we might not want to do, but that need doing, so someone’s going to do it?  How much are people helping each other when the stakes are down and things are really bad?  

All of this, of course, within the realm of what we can help – there can be physical, psychological, emotional, cultural, and economic reasons that very legitimately prevent a person from pitching in at a particular time.  And that’s real.  And nobody should push a person who truly can’t do it.  

But everyone should also look inside themselves, do some fearless soul-searching, and try to learn the difference between “I can’t do this” and “I don’t feel like doing this”, because that’s a distinction that’s very important in all kinds of life decisions.  I’ve sometimes felt that I couldn’t do something, only to realize that I just didn’t want to – and with that realization, I went and did it and a weight was lifted from my shoulders.  Understanding this distinction is much harder when you have legitimate reasons you can’t do things, and it’s much more worthwhile to do that soul-searching – without guilt or shame, just with an eye to find the truth.

It’s also real that there are people who will take advantage of a community’s tendency to help its own.  I’ve run into some.  They’re real scum and if they had their way, they would make everyone too jaded to help each other.  But in my eyes if I become too jaded to help anyone, then the scum have won, and I cannot let that happen.  Fortunately the real people in need outnumber the scum by a huge margin.  Everyone wants to remember the scum, because it helps them have an excuse not to help people in need, and because it leaves a gigantic emotional impression if you have ever encountered such a character.  It’s taken me years to get over my last encounter with a true slimebag of that sort.

But no matter what some people would have you believe, the slimebags are not the majority of people asking for help.  Most people asking for help need it.  Some people asking for help, who don’t seem to “need it” in one sense, may really need it for some other reason.  A person who fakes disability to get on SSI may be trying to escape the only jobs in town, which happen to be life-threatening and pay absolutely nothing.  I can’t fault such a person even if the government would.  They are trying to survive an unjust system of poverty and I have no pangs of conscience over people lying in order to survive poverty.  Surviving poverty is hard enough without imposing values that only work in tidy middle-class situations.  

And at any rate, as I said, the true slimebags are rare in comparison to people who actually need help.  If we let the slimebags convince us not to help people who truly need help, then the slimebags have won.  If we let the slimebags convince us to put all people who ask for help through a ridiculous system of scrutiny before we allow them any help, then the slimebags are laughing their asses off behind their computer screens.  Don’t make the slimebags laugh their asses off.  Help people when you’re both willing and able, that’s all any of us can do.  If we all refused to help people in need, community would collapse and the slimebags would win.

Some of the best examples of helping people in need are things I’ve seen in marginalized communities of all kinds.  PoC communities, poor communities, LGBTQ communities, disability communities.  But not just any segments of those communities.  It’s been the segments of those communities that were made of people who had known real need.  People who have known real need are the ones who will share their last can of beans with you.  We’re the ones who will wipe your ass if you can’t reach it, no matter how gross it is in there.  We’re the ones who will help you find housing if we know how.  We will send money even if it’s only $5.  And if a community with lots of people in hard situations isn’t constantly engaged in these kinds of actions, you have to wonder how much of a community it really is.

Someone else mentioned the way that communities has become meaning people with a shared identity, and how that has taken away this other meaning of community.  Which is people who share our lives with each other.  People who love each other – and act on that love even when we can’t stand each other.  People who will help dig out your car from under the snow even if they hate your guts.  People who will help each other in times of need, even when they themselves have little to give.  These are signs of a true community, and communities don’t have to be homogenous to have these traits.  In fact, I think the idea that a real community is homogenous, tends to destroy those traits more than it creates them.  

So always, when you look for communities, look for love.  Look for sharing. Look for people doing for each other, even when it’s tough or even when they dislike each other.  Look for true, concrete signs of caring, not just flowery words.  Those things will be present in any real community that you can find.  And they will be wholly absent in a false community.