I’ve been pretty busy with work lately, hence the absence of posts. This post is something I wrote to help promote the Loud Hands Project; I hope that now that this one is done, I can start focusing on the other things I want to write here.
The length of time that I can “pass” as normal varies by situation. If I’m having a one-on-one conversation or engaging in some sort of physical activity like walking or dancing, I might be able to come across as relatively normal until I get tired. In any situation that involves sitting still, though, I don’t pass for long.
It’s my hands (and, to some extent, the rest of my body) that betray me: deprived of the ability to mask my movements as gestures or purposeful activity, I start ticcing, twitching, squirming, tapping, flapping, hair-twisting, and picking/scratching/biting at my own skin. If I’m in a chair during this time, it’s highly likely that I’ll end up putting my knees and feet up on it. I am in nearly constant motion.
Not everyone will recognize this as the sign of a disability; some will label me as simply nervous, hyper, immature, bored, or weird. There have even been a few times when I was accused of being on drugs. Whatever it is, it’s not normal. It’s not the way adults are supposed to behave, particularly in lectures, movie theaters, offices, restaurants, religious services, or day-long board meetings.
I was never told to have “quiet hands” as a kid. I was told to stop squirming, stop fidgeting, stop doodling, stop scratching itches (which due to tactile issues are relatively constant), sit on my hands, and get my hair out of my mouth.
Other kids were told this sort of thing too, but unlike me, they could actually do it. I on the other hand never quite stopped being the kid who spent all of class with her feet on her chair, chewing on her own hair (or, later, twisting her hair or scratching her head) while doodling and looking out the window and still managing to know what was going on. My blogging handle – Twitchy Woman – was something a friend used to call me, affectionately, in high school (meant to be sung to the tune of “Witchy Woman”).
It turns out that, in fact, I knew what was going on in class because I was doodling and looking out the window with my feet on the chair and chewing my hair. When forced to stop, my mind seemed to lose its anchor and float off into some other dimension.
Of course, I was also the kid with the weird, immature-looking walk, swaying a bit from side to side while holding my arms out in weird ways and, frequently, tilting my head to the side. When I ran I frequently looked (and still sort of look) like Orville the albatross trying to take off. I was the kid, and am the adult, who will if left to her own devices eat the same exact breakfast and lunch (and frequently dinner) every single day (If I lose this habit, I usually end up not having a clue what to eat and you don’t even want to know what I end up eating). At the office, I often have the urge to walk all around the office, trying to inconspicuously check in every office to see who’s in and in every office supply cabinet and the office fridge (sometimes twice) to remind myself what’s there. I’m the person who will with some regularity just start wandering off because I think a conversation is over when it isn’t.
These are all things that I absolutely cannot control for very long. The times that I’ve tried to inhibit them over the long term – mostly when I’ve worked in close quarters with others in very conservative office environments – tend to go badly. My productivity suffers and I end up getting sufficiently stressed that I end up picking uncontrollably at my face or head. The effort, and the knowledge that it’s not even making that much of a difference, is depressing and distracting.
So lately, as I’ve been becoming more and more “out” in various aspects of my life, I’ve been trying to not even try to control it. I walk through my apartment and neighborhood flapping, clapping, tapping my fingers, with my head turned to the side. I am a bit more subdued in the office and remain as subdued as possible in certain meetings, but overall am not spending much effort trying to suppress how I move. I attended a disability leadership conference earlier this month – which I’ve been meaning to blog about anyway but haven’t gotten around to – and spent a large part of it flapping and rocking side to side and tapping my fingers and ticcing.
I’ve been happier and more productive than ever. I think that maybe it’s actually impossible for me to feel happy when I’m not moving in certain ways. For such a long time there just weren’t that many times out of the day when I actually felt good, as opposed to anxious or angry or bored or something, because I wasn’t letting myself do the things that I need to do in order to actually feel good. It’s so much easier to transition from one activity to another when I let myself flap my hands. And it’s so much easier to think when I let myself tap my fingers, rock back and forth, or squirm into weird positions. I’m achieving levels of productivity that I normally only have when I force myself to stay at the office late at night when everyone has gone home, since those used to be the only times that I actually let myself move around in the office the way my mind wants my body to move around.
This, to me, is why the Loud Hands Project is important. It’s an opportunity for those of us with neurological disabilities to re-learn how to live in a way that many others take for granted: to go through our day without the constant self-policing, self-examination, and self-denial that it takes to look normal. To use all that freed-up energy for the things we want to do and the things we want to get done.
The Loud Hands Project has already raised $10,000 and will be putting out an awesome anthology on “essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands).” But it’s still accepting money:
Here’s the deal. We’ve set three incremental benchmarks. As we meet each benchmark, we’ll be able to fund additional components of The Loud Hands Project. After all, as you can see from our description above, the anthology has always been just the beginning. The Loud Hands Project is a lot more expansive than a single book, and we have an opportunity to start putting down roots much earlier than we’d hoped. Take a look at what we’re thinking of:Benchmark 1: $15,000 “About us, without us”
“About us, without us” is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism. If we make the $15,000 benchmark, we’ll be able to pay for Julia to go on the road and collect interviews and footage, and cover production, editing, and initial distribution costs.Benchmark 2: $20,000 “Welcome to the Autistic community”-With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012—Autism Acceptance Day.-Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.
-Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.Benchmark 3: $25,000: Connecting to Community Together
To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.