otp: loud hands

2

My mom used to tell me that if you smile it will make you happy. That never worked for me. Not even close. But if I flap, it makes me happy. And if I’m happy, I flap. I smile sometimes when I’m happy too, but smiling on purpose never makes me happy, and I quit purposeful smiling ages ago. Flapping on purpose nearly always makes me happy, though.

Loud hands forever!

amazon.com
On Amazon: Loud Hands: Autistic People, Speaking

The Anthology is now up and available for purchase! Just in time for holiday giving, you can now head to Amazon to share Autistic voices with friends, family, community, or even just for yourself. 

“Loud Hands: Autistic People, Speaking is a collection of essays written by and for Autistic people. Spanning from the dawn of the Neurodiversity movement to the blog posts of today, Loud Hands: Autistic People, Speaking catalogues the experiences and ethos of the Autistic community and preserves both diverse personal experiences and the community’s foundational documents together side by side." 6"x9”, 291 pages, paperback. $24.99 on Amazon. 

The Kindle release is to be expected over the next week. 

We encourage readers to review the book, film reaction videos, and more. We’ll have more on that later in the week, too!

[Warning: Hand going back and forth rapidly may cause a flicker effect that could trigger seizures or other problems. I can’t tell, it doesn’t do it to me, but you never know so I’m also putting a seizure warning in tags.]

Hand Motion Helps My Motion Sickness And Nausea

This is something my hand started doing on its own after I developed the capacity for motion sickness in my late teens. It seems that my hand knew what it was doing. This movement – although much more intense than you see here – allowed me to go on roller coasters without throwing up. This was before I developed other conditions that made roller coasters a bad idea.

My teachers, shrinks, and parents hated whenever I developed a new unusual set of movements. They randomly called them all sorts of names: Stereotypies, psychotic behavior, compulsions, stims, self stimulation, etc. all of them meant that they were terrible things I shouldn’t do. Often I was also told people were staring, I was embarrassing my family, any number of things to convince me I had to stop.

At one point when I was about 15, my parents bought me a rocking chair to make my rocking look more normal. I got the last word on rocking in my twenties. My father, who is also autistic, told me not to rock. I asked why. He said it made him uncomfortable. That it reminded him of psychotic people. (A common refrain in my household from both parents was that I looked blind, psychotic, stiff moving, or retarded. In those exact words.) I said “Dad? You’re rocking too.” He has never bothered me about rocking in the 10+ years since that incident.

Anyway I was strongly discouraged from hitting my chin. For all the usual reasons. It looked bad, being the top one. And by extension made my family look bad. But over the years it has been the most powerful natural way to fight nausea available to me. I have to take a huge amount of nausea medications to keep the nausea from my gastroparesis under control. But I’ve had nausea long since before I was diagnosed with gastroparesis. From a lot of sources, gastroparesis only one of them. And since it was a long time before I got Zofran and Reglan, and a long time since then before I got all the others, this movement was absolutely vital to controlling nausea and motion sickness in a variety of situations.

One of those situations was what happened after I developed motion sickness at around the age of fifteen. I had always had unusual visual perception that made the entire world jump around and look like a mess, especially in new places. In the past, I had used that almost like a toy to play with. It was enjoyable to simply sink into all those new sensations. But after I developed the capacity for motion sickness, I also became so ill traveling to new places that people told me they’d never seen anyone vomit like that who wasn’t drunk. Or else I’d have to spend the whole trip lying in a corner trying my best not to throw up – I had a phobia about it. Years later a researcher told me I was developing motion sickness in relation to my visual perceptions of my environment (worst in new places) fragmenting and jiggling around. That’s why it happened in new places whenever I traveled, regardless of whether the travel itself should induce motion sickness, and that’s why it only began after I developed more traditional motion sickness being driven in cars.

I noticed that when I allowed my hand to tap my chin like this, I threw up far less often and even felt less nausea. I had to get over the fear people had instilled in me about how bad it was to tap my chin. But once I got over it, it worked. My hand learned to do this on its own, I’d never done it before, but suddenly in the middle of a windy mountain road my hand randomly started tapping my chin. Maybe it had done it before, but I sure hadn’t noticed. My body knew what it needed and it was going to do it.

This was one of the first ways I learned that my body’s impulses to move in unusual ways were actually always for a reason. I didn’t have to know that reason. But there was always one somewhere to be found. Many unusual movements helped me orient my body spatially. Others helped me carry on an ongoing set of connections with the world around me. They showed me how to perceive my surroundings despite my sensory chaos. And many were a form of communication within myself, to others, and to things around me considered inanimate. I’ve carried on discreet conversations with other autistic or otherwise developmentally disabled people, without our staff even knowing, because staff thought our movements were meaningless proof of our mindlessness.

It makes me so angry now. That movements that have meanings and usefulness are considered utterly pointless and useless by “experts” who might as well be trying to do surgery with pinking shears. People are taught that their own movements are useless and pointless, and that if they don’t know what a movement is for then they have no use. Some people learn to hide and do these things only in their rooms, others can’t, others can only some of the time. For what? Eliminating things that help us navigate a confusing world?

Meanwhile, we go about the world, moving like we do. Other people take these movements as certain proof that there is nothing really inside us. When they are really a sign of our bodies naturally learning to do our best to understand what’s going on around us, rather than a sign we can’t understand anything.

And now. People treat me like crap and call me the r word because I thump my chin with my hand. And I want to give out what I have learned about it. It helps me with nausea, especially motion sickness. (Including motion sickness caused by visual turmoil and distortions associated with sensory issues.) If it helps anyone else with motion sickness, that’s great. If anyone can modify it into something that helps them with motion sickness but isn’t exactly the same because their body isn’t quite like mine, that’s also great.

And since people have asked me before: It doesn’t matter if your body didn’t come up with a motion on its own. It’s still okay to use it. It’s not wrong unless its used to make fun of people. Hell, one reason people don’t like putting autistic people or Touretters near each other is that we pick up each others movements all the time. They see it as bad but it’s natural for all human beings. They mourn our “impaired imitation” yet also mourn our perfectly good imitation of each other, because they are fundamentally uncomfortable with us being autistic and having autistic mannerisms. Most of us have both our own innate mannerisms and mannerisms picked up from others, whether we are autistic or not, unless we’ve been kept away from people like ourselves. And we also have mannerisms that have grown and developed over the years.

So no. I have no copyright on this mannerism. Neither does anyone else. It is fine to use it. You are not appropriative. It angers me that autistic people are being taught things like this are appropriative when that person may be the one who really badly needs a nausea treatment, and gets it from this. What matters is that moving in a certain way helps you. As long as you’re not doing it to be a jerk, there’s no problem. And if you have to hunt deeply in your soul for whether you’re being a jerk about this – you’re not the kind of person I mean.

Anyway. I didn’t mean to get all pissed off. I honestly just want to give people a potential way out of nausea and motion sickness. It doesn’t work if it’s severe enough, but it was good enough for me to handle roller coasters and winding mountain roads. So try it. Vary it. See what works best. Don’t be afraid to use it if you have to. And don’t let anyone quiet your loud hands.

I’m also going to be very curious if this helps anyone who isn’t autistic or even anything close to autistic.

I just got my copy of Loud Hands in the mail. Thanks!!!

My only problem so far is the way the letters work. They’re this combination of being the tiniest print I’ve ever seen in a book, and really wide columns, which makes it hard for me to read it. I actually sometimes do better with small print, but it has to be in narrow columns, so it just doesn’t work.

Other than that though so far it’s great.

youtube

right, so i’ve posted this already, but,

1. the loud hands project is at half of its fundraising goal right now, which is AWESOME!

2. i have found myself watching this over and over tonight and trying not to cry.

i have wonderful, amazing, beautiful friends, who love me so much despite/because of my flaws. i am eternally grateful to them for the fact that i can do things like walk into a room handflapping and rocking, and once they know i am okay, they do not question it.

but i really, really wish i had a group of friends in real life where that wasn’t something different to be accepted [or not] by others. i wish i had a group of friends to hang out with where that was the norm. where no one asked for an explanation, not because they did not care, but because that was just what everyone did.

i have friends who love me so much. i love them more than i can explain, and i cannot even begin to put words to the influence they have been on my life. but with my friends, at school and at home, i am always different. none of them really mind, and i love that. but accepting me does not make me less different.

i just want to be the norm for once. i’m sitting here rocking like a fiend and i want that not to be something accepted, but something unnoticed. and everyone is different in their own way, some more so than others, but i just always feel a step away, even when i am in the middle of a group, even when i am sharing with my friends and we are all laughing together, i feel different.

i think everyone feels like this sometimes but i feel like it pretty much all the time. and my friends absolutely do their best to assimilate me into the group, and i love that we can all kick back and joke about it, or we can just do whatever we are doing. that is so great.

but i feel really separated from everything, because i AM different. accepting me doesn’t make me less different. and i wish that i had a group that i could go be with and not be [all that] different.

this makes no real sense, i’m just feeling really disconnected tonight and i wish i had someone to handflap with.

ps. watch the video because oh my gosh it’s so good you guys.

The Loud Hands Anthology's Tiny Print Has Been Fixed!

As many of you noticed, the print in the anthology was really small. Small enough that some of our contributors even had a hard time reading their own entries!

Our first run of the Anthology came back from the printer with much tinier print than we intended. Somewhere along the line, our original formatting was disturbed. This means that we got misprints of the anthology in a tiny font size.

Thankfully, our printer has been able to correct this error, so new copies of the Anthology won’t be in such small print! You’ll also note that this means that the anthology is around 100 pages longer in the new printings.

Already have your copy? Don’t worry- while we’d love you to buy another copy, we believe that you deserve access to what you already have.

If you got a misprint version with the tiny print, you can email loudhands@autisticadvocacy.org and we will send you a free PDF copy!

Should you choose to buy another hard copy, Amazon is currently selling them at a discount.

(Sorry, these don’t apply to the eBook version.)

I think my body wanted to work off some stress. And I’m trying to capture video of its natural movements and stuff at times like that. Hence this. I wasn’t sure whether to put a seizure warning on it because of extremely rapid hand movements and some weird color changes in the background. So I erred on the side of caution and did.

Sooooo I’ve been seeing people in the tags looking for a place to infodump, another communal space, etc.

So this is just another autistic space where you can come talk about stims (also go to fuckyeahstimming, a wonderful blog), sensory issues, infodump to people who want to hear about your special interests, etc!

I called it “loud hands loud heart” as a celebration of having loud hands :)