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“Remember, you weren’t the one / who made you ashamed, / but you are the one / who can make you proud.”  - Laura Hershey, You Get Proud By Practicing

I think a lot of the people who read my blog are also people who have read Quiet Hands by Julia Bascom. (I actually already linked to it in my own Rocking (and Flapping) at a 1000 Revolutions a Minute.) If you haven’t yet, please go do so either now or after you’ve finished reading this post. Julia got a massive response, as Quiet Hands went viral. It became very obvious that it was describing an experience that a lot of us have either experienced or have observed, sometimes unaware of the emotional and communicative consequences.

One of the devastating effects of the phenomena that Quiet Hands describes is how it silences Autistic communication. For many of us- and particularly those of us with verbal communication difficulties- our hands are our primary communicative tool¹. We stim with our hands, we supplement our language with gestures and pantomime, we use languages like ASL with our hands, we type with our hands, and even utilize AAC devices with them. Things we do with our hands is how we connect with one another- even if that community building isn’t recognized by others. So when our hands are stilled, we are silenced and isolated.

What, with this context, does having “Loud Hands” mean? Obviously it would have to embody the opposite of- and possibly counter to- the silencing described above.

The Loud Hands Project (which is being run as a project of ASAN) demonstrates a pretty good idea of what it could mean to have Loud Hands. The project description defines Loud Hands as “autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.” Essentially, efforts that work counter to the silencing and discrediting that comes with a culture that denies Autistics the ability to communicate in ways that are natural to us.

The Loud Hands Project (LHP) is planning on being a transmedia project, spearheaded by Julia Bascom. The current focus is on putting together a written anthology that will serve basically as a foundation document. Submission guidelines/call for submissions for the written anthology went live on January 8th. They include a number of prompts on what it means to be Autistic and aspects of Autistic culture, but they welcome submissions that aren’t answering the prompts while still reflecting “questions about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively as having loud hands.)”

From there, the plan is to focus on multiple mediums as a way of documenting and curating Autistic culture and community, particularly as related to the afore mentioned concept of what Loud Hands means. And I do mean curating- one of the stated goals is to collect and store some of the founding documents of the Autistic community.

Another major direction is looking to be video projects, starting with the trailer (more on that in a moment). I’ve noticed a lot of brain storming for future videos for the LHP media collection, but the actual non-written media submissions aren’t open yet. (Opening of those submissions is still to be determined.) They are welcoming your ideas/brainstorming for future non-written submissions though! Eventually I believe that they will join the trailer on the Loud Hands Project Youtube channel.

Fundraising efforts- LHP is using indiegogo- were launched December 26th with the video below. (You can read a visual transcription/description on tumblr or at the youtube page itself.)

In the first 24 hours, the indiegogo campaign raised over $3000- and over $6000 at the end of the first week. As of 9:30pm January 10th (when I’m composing this entry) it hit $7463 USD. Fundraising ends March 15th with a goal of $10000 USD. UPDATE:  January 14th the $10000 goal was met. They are still collecting funds though- see the bottom of this post for more on this!

You can see the support levels, along with the number of people contributing at each level, at the LHP indiegogo page. Each support level has a different corresponding “reward” for your donation, ranging from a thank you email, to PDF pre-releases of the anthology, to signed hard copies donated to libraries in your name.

I personally feel that it is a much needed project, and am totally excited about it. As such, I’ve been trying to contribute in any way I can to this effort. I wrote the Visual Transcription mentioned above, as well as designing the Blog Badges (shown below) and writing most of the how to on using them.

The large blog badge, which I'm using in my own side bar; 170x300 pixels

A smaller Blog Badge; 170x193 pixels

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I’m also (obviously) writing this blog post, and sharing it in my networks. Right now, LHP is on Twitter as @loud_hands and there’s a Loud Hands Project facebook page as well. (If you clicked through on my original link, you’ll notice that the Loud Hands Project is on tumblr as well.)

I think another interesting feature of the campaign is how various accessibility measures have been added.

The visual transcript for the trailer was requested before the campaign went live, which is kind of a big deal- while captions are becoming more popular, visual transcriptions are not as common. After all, they are time consuming to create- more so than image descriptions- and like image descriptions can be hard for people with visual processing issues to write. But they can be a big deal for visually based messages becoming accessible for the Blind, visually impaired individuals, and those with visual processing issues.

Additionally, there has been a recognition that language processing difficulties can be a barrier in sharing stuff like this. Two days after the campaign went live, scripts for sharing LHP‘s campaign went live.

This isn’t as uncommon to be accommodated, though outright recognition that it is an accommodation is, I think, less common. More often scripts get framed as “We recognize you are a Busy Professional Person™ who doesn’t always have time to handcraft sharing emails, so here’s an example you can use!” It has become something that, when present, isn’t seen as an accommodation, which would be great if it wasn’t for the resistance that those who do need this particular thing usually get when they have to ask for it. I think that in this context, the fact that the scripts are openly recognized as having an access function as well as being given in an overwhelmingly supportive manner in response to requests is significant.

And, of course, the blog badges have image descriptions and I’m going off to caption the lyrics to the song in the trailer via Universal Subtitles tonight. (Which means they’ll be up by the time this post goes live.)

I hope you’ll join me in supporting the Loud Hands Project. I hope you’ll link it, share it, tweet it, blog it, and post it. I hope, for those who have the money for even the lowest level of support ($10) , that you’ll donate. That you’ll encourage others to donate. And, once the fundraising campaign is over, that you’ll continue to support the projects of the Loud Hands Project.

I believe that we all should have Loud Hands, and that LHP is a great way to facilitate that. Not everyone is in a position where they can go and be safe stimming in public, or writing long blog posts, or have the supports to do speeches or attend protests or go to conferences like Autreat.  But it is possible for some of us to do some of the little things- making a video or a painting, answering a mini-prompt, constructing things in our own natural languages that say, “I am here. I exist. I can be proud.” These are the core of what it means to have Loud Hands.

The big things are great. But sometimes it’s the little ones together that end up being the loudest.

¹ I recognize that some of us also have mobility difficulties that make using hands in particular not something that is doable. If you can think figuratively, hands is a stand in for all the other non-verbal techniques that people use to accomplish the things we are talking about. Our hands here are not just literally our hands, but our own means of communicating. The same goes for words like “voice” and “speaking”.

UPDATE (January 16th, 2012): On January 14th The Loud Hands Project met their $10000 USD goal. That’s right, in 19 days you- the supporters- met a goal that was planned to take 80 days. Great Job!

Seeing how much our community needs LHP, and with encouragement from indiegogo, LHP is going to continue fundraising through the original March 15th deadline with benchmark goals at $15,000, $20,000, and $25,000. You can read the details on the projects at the Loud Hands Project blog, but they include more videos, more documenting of our community, more supporting Autistics pursuing community, and the launch of the website and all of the resources that will bring.

It’s exciting- exciting because we need it, and exciting because it means that we won’t have to wait for the anthology to be a success before LHP will be able to start bringing more projects to us.

Don’t worry, it all came out okay. They gave me some medications and an in hospital breathing treatment, and since I had mentioned being Autistic when they brought me in the ER doctor made sure that the information he gave me was in easily processed chunks. Also, I was able to get myself in in time before it became a life or death issue.

This isn’t the first major medical issue I’ve had. It may be the first ambulance ride one, but some of my others- ones more directly tied to my ADLS deficits- probably should have included such a ride. Which is part of why I’m writing this post, actually.

The other reason: I’ve seen a number of people have their ability to live independently or not assumed based on things that have little actual effect on living independently. Being non-verbal vs verbal is one of my favorite irrelevant ”indicators” of independent living. It has little practical impact when one has an AAC devices that is suitable for them outside of people’s prejudices.  I think other advocates have their own favorites.

I’ve tried living independently with minimal supports before, and it didn’t work. Because of my relatively irrelevant skills, some people assume upon meeting me that I’m someone who can live independently without extensive supports. They are incorrect, and I have the medical records to prove it. I’m not talking about assessments- I’m talking about the consequences, medically, of ignoring my support needs and Adult Daily Living Skills (ADLS) deficits.

The first time, I was trying to attend college. Because of other un-supported needs around the paperwork, I was having to live off campus. So I was on my own for the first time. I was in the nearest place I could find on short notice, in a tiny 2 bedroom house in a bad neighborhood in Erie, PA. After about two months, I had a man move in with me from back home who I was seeing. He had his own difficulties with executive functioning due to his ADHD.

In any case, I seemed to be doing okay. But there were little basic things that people would label as “minor” deficits. Not knowing how often to thoroughly clean the bathroom or kitchen, not being sure what needs cleaned. We weren’t living in a visual squalor or anything- but I couldn’t tell how to deal with or when to deal with things beyond picking things up and doing dishes.

In December, shortly before finals, I started to feel sick a lot. I’ve had GI issues most of my life- which I’m now finding are partially because of unidentified “mild” lactose intolerance- so I thought it was a part of that. The weekend before finals, I was miserable. The only non-graphic way to say it is to say I had constant diarrhea and severe abdominal pain. But that doesn’t even sound accurate, having lived through it. I’ve posted a graphic description on tumblr that you can read if you like. But I still thought nothing significant was wrong.

As you can guess, I have difficulty identifying my own bodily wellness. While I can observe things, they are relatively meaningless unless I’m specifically looking for them. I cannot register the contexts as they are happening- which is part of the reason why my lactose intolerance has been un identified until age 24 even with lifelong GI distress. I also struggle to figure out if my experiences are normal or if they are something to ask the doctor about- my fibro myalgia, for example, is pretty bad and has been symptomatic since I was 15, but I didn’t realize that the level of pain I was living with was abnormal until my 20s. (It increased dramatically at this point, which caused my mother who also has the diagnosis to ask questions.)

Sunday night I got to the point of being delirious. Not having much money, though, I refused to take an ambulance. The man who lived with me called around and found someone- a person I had gone to high school with who was attending the university- who was willing to drive me to a hospital. They did, and I didn’t even have to sit down in the ER before they took me back. It turned out I had gotten to the point of being in mortal danger- from C-Diff.

Most people pick up the bacteria in a hospital, and have it overrun their systems when they are on anti-biotics. I was not on anti-biotics, and hadn’t been to the doctor in a while. Additionally, I was on no other medication at the time either. The closest we can guess is that my difficulty with “higher level” cleaning and sanitation was a contributing factor.

Another major medical incident involved another time where I was living primarily on my own. I contracted MRSA, and had it not been for my brother deciding that it looked like it needed to be looked at, it could have been much worse than it was. As it was, I ended up with a very large infection on my lower abdominal area. If I weren’t so overweight, it would have eaten through my abdominal muscles. Instead, it ate fat.

The long q-tip the ER doctor used to get a sample deep inside went in more than half way without touching bottom. It was rather disgusting. I ended up basically having a hole 2 or 3 inches deep in my side, which I had to cover with bandages which were considered highly bio-hazardous when I changed them every day. Today, I have a scar on my side that is dark-ish purple.

Again, I had none of the common risk factors associated with community-based infection.

In my case, both of these were at least partially caused by complications of insufficiently supported ADLS deficits. I have had a number of other, more minor health consequences as well, but these are the more serious ones. I’ve had non-medical consequences as well, but those are not the subject of this post.

The point is that my relatively less intense ADLS deficits were still a major factor in my health becoming endangered. It wasn’t my major issues organizing and managing money or bills, nor was it my issues managing people, that put me in danger. It was the parts that people brush off- difficulty judging my own health, and of judging what is normal and “appropriate” actions, of managing and knowing when to do some of the basics.

And I’ve no idea if any of this is making any sense. I feel a bit as though the thoughts aren’t done being put into words yet. Maybe I’ll revisit it again at some point? I’m not sure. I just know I was thinking about it a lot while I was in the ER this past weekend. So. . . there’s that.

So in light of this I regretfully must delay the publication of the post on Poetry I scheduled today.

Instead, have a few links!

Disability Blog Carnival #79: Disability and Occupy
“People First – Create an Environment of Respect”

Creativity- [mass noun] the use of imagination or original ideas to create something; inventiveness: Firms are keen to encourage creativity.

-Oxford Dictionary of English

Creativity- n. the use of the imagination or original ideas, especially in the production of an artistic work.

-The New Oxford American Dictionary

It’s taking me a minute, but notice the differences between these dictionaries’ definitions for creativity? The ODE definition is closer to what I think of than the NOAD version. (Note: These definitions are from the Kindle versions that are updated with changes automatically.) When I went to look at the about, NOAD didn’t have anything. It’s a standard American usage dictionary. ODE was a little better- in fact, there’s a long forward in this edition of ODE. They adopted a different style for this one, one that “aims in part to account for the dynamism, imaginativeness, and flexibility of ordinary usage.” (They also included usages in a wider range of English using countries instead of just American usage.)

Because of my language acquisition methods, the range of concepts/shape of the word in my head shifts every time I hear a word differently. Because of the range of the usages I see for the word “creative” is broad, my idea of how to use that word is broad. It puzzles and frustrates me that people have limited definitions sometimes.

In fact, for a very long time- until the past two years actually- I was frustrated greatly by dictionaries. They never seemed to encompass everything about the words that I was learning. That the resource everyone was pointing me to when I was confused by how people used words didn’t cover the areas that I was struggling with- usage, broad definitions, implications, etc. – was frustrating. Beyond frustrating- I’m trying to think of an analogy that is a little more obvious without being unfair or ridiculous to compare. Like entering a supposedly accessible bathroom stall, only to discover there’s not enough room for your power wheelchair. The people in charge say “but we have an accessible bathroom!” but what they don’t understand that the supposedly accessible stall – which is meant to help you – doesn’t. Everyone thought a dictionary would solve my word usage problems, but for me, it didn’t actually grant access. Just because it meets the minimum standards of accessibility does not mean it actually meets the need in question.

As I’ve come to accept how broadly my neurology impacts some of the aspects of my life- and that just because I’m “good” at something doesn’t mean my disabilities don’t impact them- this has become a little less of an issue. My disability justice work, in particular, has reached a depth where I can recognize what is going on. I can now identify the issue, and either find a way that actually helps me or accept that I need to approach the issue a different way. It was a very hard lesson for me.

Don’t get me wrong, it doesn’t make the issue go away. For example, I still can’t define words very well on my own/in my own words, even when I’m relatively competent in using the words. More so for “abstract” words or usages of course. How I struggled in school when this is the sort of definition the teacher wanted instead of one that was lifted almost directly from a dictionary! In elementary and middle school, my LDs greatly impacted my grades and my relationships with teachers who thought that since I seemed to be “brilliant” or “intelligent” my issues must be laziness. By high school, I was a perfectionist about my grades, and when I had this sort of teacher I would get very frustrated. (Interestingly, the advanced placement or “honors” teachers were generally better with my approach to language usage than my other teachers.)

This brings me back to my point- to me, this approach of finding my own work around, one tailored to my own needs, is creativity in action. Building an accessible world is creative to me. Innovating, creating, re-purposing- to me, these are all creative acts. Sometimes they are hard acts, sometimes they are necessary acts, but they are all creative ones.

Sometimes they are vanishingly small acts- finding a way, even collaboratively, to deal with the trigger warning vs content warning issue for example. That debate is an act of creativity to me. The sense of awe I get when seeing innovative art even comes in to some extent. Any more, as I accept that other people don’t see it this way, I even get a sense of wonder about the sheer diversity of creativity- that my sense of it includes things that other people don’t, that it includes people who have felt alienated by other senses of what creativity is.

But that’s my personal definition, and if someone doesn’t identify themselves as creative I won’t label them as such. Performing acts of creativity isn’t the same as feeling an innate sense of creativity, and labeling a person something that functions as identity without their consent is kinda disturbing to me personally.

So, too, is ascribing attributes to an entire group of people. There is this- idea? Cultural meme?- that Autistics, because they are Autistics, aren’t able to be “creative.” I think this is pretty much the most easily debunked idea out there, but I could be wrong. It could be that their usage of creativity meets neither my own definition- which is admittedly broad- nor the ones in the dictionaries. But most people I’ve heard spout this realize they are wrong pretty quickly. There’s another one that people with mental health disabilities are inherently/innately creative in the traditional sense. This is harder to debunk, but it can be done. Especially if you know some of the people I know who explicitly identify as not creative. And I’m not just talking about medical model or even disease model people, either. Segments of the MHD community do actively ascribe creative to their experience of their MHD. That’s awesome. But it’s not awesome when they then try and ascribe creative as inherent to all people with MHDs.

I’m fine with creative, I’m even fine with linking my forms and concepts of creativity to aspects of my disabilities. But that’s my experience of my own disabilities, not someone else’s experiences. I don’t have a right to infringe on their autonomy- on identity or on anything else. I need to recognize- and yes, it is hard work to think this way for me because of how my brain works- that their experiences are not my experiences. And my experiences are not yours, your child’s aren’t yours, and your clients’ aren’t yours.

Which circles back around to realizing that not everyone has the same sense of words. Please understand, it wasn’t until I was 21 or 22 that I realized that not everyone experiences words and concepts as a mish-mash of texture, movement, and shape. I struggled a lot with figuring out why my words were wrong before I comprehended that I was processing the concepts behind the words differently. There were even times where I was shocked that someone would comment that they found a way of saying something or making something was creative. To me, the langauge that they found poetic or the art I made that they found creative were literals or very close approximations of how I experienced those concepts.

When I sit down to write poetry or make art, I don’t sit there and work on “creativity”. I sit there and I try out words that seem to be the right shape for what I’m “seeing” inside of my head. I sit there and think about the things that make me feel a certain way, that makes my internal experience match the concept my art is illustrating. I create a lot of analogies, and I go through a logical process of turning them into similes and then into metaphors. I create long lists of properties I see and feel about the two things I’m comparing. Sometimes I have to drop a concept because when I make the lists, I realize that the things I’m experiencing aren’t as similar to each other as I initially thought.

To me, while this might technically be an act of creativity, it doesn’t make me creative. It’s just how my brain runs. The sense of me as creative here is something that you or society is experiencing about me, and in this case I don’t mind it at all. Sometimes I do feel like I’m being “creative” in a smaller sense- the NOAD sense if you will. But much more often, I’m just being, experiencing the process of creating in the OED sense, or even my own personal sense of what creativity can mean.

Thank you, by the way, to elementary school teachers who got frustrated and desperate trying to teach me the differences between analogies, similes, and metaphors. I know it took me ages, but the tactics some of you tried did end up creating a functional system to process language stuff later on. Also, I read a lot of the books like “Heavens to Betsy” and other linguistic trivia books that would explain in plain language why people said certain things and used words in certain ways from an etymological perspective. I’m one of those people who loves dictionaries with huge etymologies. Sometimes I understand the word from the etymology better than from the printed definitions. In any case, language use and I have quite the complicated relationship.

I’m going to stop this entry now. The next entry in this series will be on poetry, and I’m setting a tentative date of Thursday, December 29^th for it.  I’m not sure how many parts this series will have, as I think it will be an on going thing where next time I work out an entry that falls under the topic it will be a new entry in the series.

“All of us have moments in our childhood where we come alive for the first time. And we go back to those moments and think, ‘This is when I became myself.‘” – Rita Dove

This is part two of a two part post. You can read these separately, but this post will make more sense if you’ve read On Childish Things I first. 

[Content Warnings: mentions of Abuse, ableism, denigration of “childish” behaviors”, sibling's internalization of abuse/ableism]

The year that Rick left was the same year that I read the Harry Potter books. At first I had been reluctant to even read them for the same reasons I had avoided other fantasies people my age were reading. But then I read Prisoner of Azkaban.

I hadn’t sought it out. My cousins from New York were visiting and my Aunt Lisa over heard me complaining that I was bored and wanted something new to read. She went to her van and dug out one of her son’s books and handed it to me. I think the most effective way to explain what happened is to say Collin never got his copy of PoA back. (Cousin, I owe you a copy if you ever read this.)

Within a few months, everything in my life became about Harry Potter. It was mostly internally, as we were too poor to afford any merchandise. But every moment, every safe hold, was wrapped up in this special interest that was blossoming within me. I dreamed of leaving Rick and therapy and censure behind, to go to a school- not a magical school, I knew that wasn’t real- where I would have to stay in a dorm, as safe from it all as Harry seemed to be from his Aunt and Uncle. Indeed the moment when I truely came to love the SCA was when, during my first Pennsic, the only comments I got to sitting to read in a public thoroughfare were comments from adults asking me like an equal how I liked the latest book.

Rick finally left that fall- and we got internet for the first time. My struggles with being around others my age had developed to a point where, combined with behaviors at home, the choices were a residential placement or the newly emerging cyber school programs. We chose cyber school. That first year of internet was covered through that, though I learned more from my “recreational” time than I had from the official curriculum. Searching for more things on Harry Potter, I found the Fandom community.

I don’t know how many of you are familiar with Fandom. I think of it a bit by taking apart the word parts. Like in a kingdom, all things were centered on what the thing we were fans of in place of a king’s will. It’s like a community where a shared interest- or, not uncommonly it seems, special interest- is where everything is funneled through. I learned so much there- how to have friends, how to maintain coversation, even how to write and articulate my thoughts and feelings beyond inept, purely practical communication.

Being a part of this community was just as “magical” as Hogwarts itself. The elusive concepts of community and fellowship that I saw others have little trouble with became real things. Connection to others suddenly had a real value. I could go on, I think, for a long time about how Fandom changed me, gave me elusive skills, and even healed some parts of me that abuse and mistreatment had damaged. (Indeed, Fandom and the vast joy it gave me allowed me for the first time since early childhood to reclaim that oft repressed joy of flapping.) But Fandom’s healing powers has only a tangiantal connection to what this post is about.

Until after I graduated high school, Harry Potter and its fandom were my primary interest. I ate, slept, and breathed it, I did my homework at school instead of reading in my down time there so that I would have more time for it at home. I excelled in it. When I finally returned to public school after a year at the cheapest private school in my area- an evangelical school- I had a focus that allowed me to ignore the other students for the most part. This focus on fandom and my fandom friends also allowed me to follow my mother’s advice of just trying to be painfully nice to others, which meant I did eventually gain a limited number of friends.

At the same time, though, the other things that I had avoided continued to be things to avoid. While some of the other fans my age were also into books like Animorphs, I secretly looked down on them. (I now recognize how horrible this is, and wish to appologize to my friends who I secretly held this interest against.) Though my brother’s skill at video games and my own enjoyment of RPGs existed, I tried to focus on more mature stories ranging from the Final Fantasy series to fairly- though not explicitly- adult themed tabletop gaming. Other stories were terrifying to me because of the childish associations I had for them. Indeed, though I did play Pokémon in private when no one was around, I didn’t allow myself to talk about it. I didn’t allow myself to fix the names in my head of the various creatures and towns for fear of anyone actually knowing that I could enjoy it.

While my interest in Fan art and geekiness allowed me to gain an interest in the art and style of Anime, I couldn’t bring myself to enjoy any of the stuff marketed to teen aged girls. Indeed, even though a distant cousin of mine shared an interest in anime I couldn’t deal with being around her for very long, as her love of Sailor Moon left me conflicted and a little scared. It was firmly, to my mind, in that realm of childish things. Even though my primary tormentor was gone, the fear of being seen as a child and as incompetant remained.

The effects of how Rick used this to divide my siblings and I remained too. My brother was 16 and I 17 when he decided he couldn’t handle living with me anymore. My behavior at home, though much better, could be set off by taking away my special interest. I was using up my energy and self control at school and in public, and couldn’t handle being parted from my interest for most things that my brother saw as “normal.” Honestly, I don’t know to this day what he thought would be better or more normal. I have no idea what else someone with very few friends- most of whom I didn’t do anything with outside of school or organized activities until the end of my Senior year- was supposed to be doing. I did know that I had something that brought me joy, and that taking it away brought me distress.

Having internalized the idea that I would never be mature or competant, my brother couldn’t take it any longer and moved in with the family of one of his friends. Though he is not as avoidant of me as he once was, he never lost the idea of me as incompetant. The idea that I would never be competant to fully understand things never left him. To this day, I do not feel safe holding any opinions when I am around him. I am not skilled enough or fast enough with putting things into words to defend my opinions, and when I become frustrated he brings up that I’m too emotional, stupid, or even incapable of understanding things to hold a proper opinion. Indeed, even those times I have prepared myself he will point out that in his opinion since I’m Autistic, what I have learned about social dynamics, politics, and even social justice are invalid or just not true. That my reasoning automatically must be immature and incomplete. I my mind, he has assumed the role of Rick’s enforcer, even if he doesn’t mean to.

Before Will left, my sister had her accident. Her own judgement centers had been damaged by her Traumatic Brain Injury, and this left her with following impulses. Unfortunately, this meant that I lived through a period of several years where she took advantage of how easily upset I was. However, she had been too young to have the full force of Rick’s influence and she eventually matured. At first, she still thought my uneven skills meant I was being stubborn or lazy. After my niece was born, though, she dated a young man who had 4 step siblings who were all somewhere on the Spectrum. Seeing that wide display of what Autism could be, her approach towards me changed. I’d never say she treats me perfectly, because she’s still herself- a proud bitch by her own labling. (I only use this word for her because it is how she describes her self when she’s short tempered.) But she treats me as an Equal in a way that accomedates for what I do need accomedated for. When I need her help, she no longer holds it against me. While she is still hard on me, it is more of pushing me in my skills than accusing me of anything. She treats me as much as an equal now as she treats anyone, really.

Years have gone by. I’m 24 as I write this; it has been more than 11 years since Rick left. While I hope, I doubt that I will ever reach the day where the things he left behind in my head are ever completely gone. Afterall, milder forms of what he has said are riddled throughout our society. Careless ableism, paternalism, and fixation on the pitiable and perpetual child with disabilities are unfortunately a deeply ingrained thing for the West. But I take hope, I think, from the little buddings of Autistic Community Building. It’s not just the community itself, of course- community alone is something I could seek out in fandom- but a community that recognizes and reclaims the things we’ve been told to hide.

Some of my friends haven’t felt forced to give up childish joys. I wish I were one of them, but I am not. In spending time with my community, particularly members my own age range, I am surrounded by reminders of what I had forsworn, of joy. But for me, reclaiming this part of who I am is harder than reclaiming the joy and releasing the shame of stimming. Rocking and flapping in public is no where near as terrifying for me as openly taking joy in childish things.

I wish I had a better way to word all this. To uncover all the parts of that terror. In fact as I type this, my throat is tightening with anxiety. If I reclaim my childish joy, a part of me thinks, am I affirming that idea of being stuck a child? Am I admitting to being that child in an adult body that is bandied about with pity? Do I become not an adult with their own interests but a child stuck on the past?

I know that these things aren’t true. I no longer feel shame for or superior to my friends who continue to take joy in Muppets or My Little Pony. I no longer avoid conversations where my partners linger on Pokémon or Sailor Moon (which it turns out is pretty cool.) I’m slowly taking steps to explore those things that I had discarded in fear.

But my doubt in myself lingers, and I find it so hard to join in joy easily, myself so out of practice at the words and flow for these sparks of childhood that I mumble or stay silent. I have to tell my dearest friends aloud that I do enjoy listening to them talk, and to pardon my silence because it’s too scary, my toungue too trembling, to join in their words. I beg of them to indulge and keep talking, because I still love some of these things but am not yet past my fear enough to speak that love aloud.

A friend recently was talking to me about the new Muppet movie and their excitment over it. Eventually they took notice, though, that I only hummed along to their singing and smiled and nodded to their reiterations of facts. Like many members of our community, they had been taught that a shortcut to figuring out if someone isn’t as interested in a conversation is if they do the smile and nod. Trying to explain this whole thing to them was difficult- they had never been made to feel as I had. Eventually I just told them I’d be writing this post, and we continued on walking.

A block later, I mentioned having enjoyed the muppet babies cartoon when I was very little, and how I had liked the peanut butter and bananas sandwiches that one character had been fond of. It was a short sentance, but it was something. Some sort of tiny step forward.

This week, I have plans to try and see the new Muppet movie. I don’t know that it will happen- my mother is a bit unreliable for recreational plans- but it is a plan.

My three-year-old niece, too, has been a catalyst in re-examining these things. Last week, my niece and I started watching a children’s show called Ruby Gloom. The day after she left, I was still at my mother’s. I turned on the Xbox, and I sat down and watched an episode, just for the Joy of it.

Progress is slow, but it’s never too late to make a little more.

“It is never too late to have a happy childhood” – Tom Robbins

This post is dedicated to my best friend. Their interest in things I had put away initiated my thoughts, and their joy made me re-explore my own shame.

“The things which the child loves remain in the domain of the heart until old age. The most beautiful thing in life is that our souls remaining over the places where we once enjoyed ourselves.” – Kahlil Gibran

When I was a kid- and I mean between the ages of 8 and 13- I was desperate to get away from anything I liked that were “childish things.” Cartoons? Muppets? Books with pictures in them? All became objects of shame. For me, though, this was not triggered by an internal dislike. Here, I cannot speak to the lives of other Autistics. I know a number of my friends and collegues who never faced this particular pressure, even if they faced the same taunts. The same use of “childish” as a dirty word.

My mother’s second husband, Rick, was a big man, and a bully. Speed, attention, interests- all were made into critical faults in me. Even hunger after school was pointed to and mocked when my mother wasn’t around, fostering an unhealthy relationship with food I still haven’t been able to shake. His treatment of me was often explained away by two interconnecting concepts. The idea that as a child with disablities, I both needed treatment and couldn’t accept it as “right” was a big one, but the other was the concept of “The Willful Child.”

“When I was a child, I used to speak like a child, think like a child, reason like a child; when I grew up, I put away childish things.”- 1 Corinthians 13:11

Today, I may be Jewish. I’ve even taken on my ethnically Jewish stepfather (my mother’s 3rd husband)’s last name, Breakstone. But at that point in my life, my immediate family all practiced some variation of Christianity. I could talk about specific denominatons or sub-faiths- from Dutch Reform to Jehovah’s Wittness- but in truth, what was held in our home had less to do with a denominational affliation and more to do with Rick’s idea of using biblical teachings to his conveniance.

One of his favorites when it came to me was the concept that some of you may be familiar with of “The Willful Child.” James Dobson’s books on this idea- The Strong-Willed Child- may be fairly known now, and maybe they were at the time as well. What I do know about how they were used at this time was how they were used at my house- the same way the bible itself was used, at least when my mother wasn’t home. The principles were twisted to Rick’s convenience. (My mother and I personally found that “The Explosive Child” by Ross Greene worked a lot better for me in the end.)

While at the same time encouraging services and at home abuse as “needed treatment,” Rick also labled my behaviors as that of the willful, sinful child. I was told that I was everything that a good “Christian” child was not, be they actually backed up by biblical text or not. Resistance to abuse was also framed as childish, and as willfulness. Both typical behavioral censure and spiritual censure were used against me for things as simple as wanting to continue playing with something or not cleaning up fast enough. (In retrospect, it is no wonder it took me so long to admit that even as a child- and I hope not to offend my Christian friends and readers- I found the concept of a risen Christ improbable at best.)

Perhaps most devestating in the long run was how this censure was used to divide me from my siblings. Today, I have a supportive relationship with my sister. But at the time- and to this day with my brother- this was not true. My behaviors, my failure to live up to Rick’s idea of an obediant young woman, were held up to them as a model of everything they ought to strive against being.

I think my Catholic friends might be familiar with what my behaviors were labled under different names. Lazy (Sloth) was a big one because of my lack of speed and efficiency. Angry or even violent (Wrath) when I was reduced to lashing out as resistance. Fat, chubster, and so forth (Gluttony) for hunger and later hoarding behaviors. While I avoided the traditional concept of vanity being played against me until my eating disorder had excelerated, elements of it cropped up in accusations of selfishness (Greed) and willfulness whenever I attempted to establish boundries about my self, my privacy, or my belongings. Indeed, my distress when several things I had charished as perhaps only an Autistic can were lost in our move to Pennsylvania were added to my greed and willfulness. The only “Cardinal Sin” I was not accused of in some way was lust, though I’m not sure if it was through the non-consensual labling of PWD as asexual (as opposed to labeling one’s own orientation as such) or if it was my age.

I could- and perhaps someday I will- write a full length book about the things that happened when my mother was not at home. I want to reaffirm right now that other than her obliviousness to what was happening my mother did right by me in every way that she could. I believe that in part the spiritual abuse she was facing- an abusive form of complementarianism combined with a religious bigotry against divorced individuals- combined with her own ADHD that allowed things to be missed. Additionally, Rick’s articulate dissmissals over my barely articulated- if you could even call it that- complaints of “unfairness” would be hard to dismiss in our society even without the abuse she was facing.

When I started this post, I didn’t realize how much spiritual abuse played into this, nor how much “willfulness” and “childishness” had been conflated. In any case, they were conflated and tied together. Indeed, any sign of so called willfulness were pointed out as evidence of why Rick’s claims that I would never grow up, that I would be perpetually incompetant to make my own choices just as a child would be. I became desperate to prove somehow that I wasn’t childish- that I wouldn’t stay a child forever.

Unable to eliminate my “childish, willful” behaviors despite my own best efforts and Rick’s “treatment,” I searched for other ways to escape this censure. The only thing left to me was to eliminated the outward trappings of childhood as much as possible. Things that I enjoyed became things to avoid at all costs. Cartoons were an especial target, even if they weren’t designed exclusively for children. We didn’t have TV- we couldn’t afford cable, and there were no channels that we recieved reception for- but we did have VHS tapes.

No longer could I enjoy, for example, the animated Hobbit and Return of the King. I forced myself to bury my distress at having lost my Disney movies (they were among the things that were lost in the move), and struggled when my brother’s interest in Beauty and the Beast and The Nightmare Before Christmas flourished as we entered our teens. Even my enjoyment as a child of puppet based television such as the Muppets or Fraggle Rock were to be eliminated.

Toys, too, became objects of dirision, even ones that were educational or even deemed “age-appropriate.” I had never really played with my toys the way some children would- I stacked my dolls or created displays of them unless another child was present to direct play. But now even creation of toy based dioramas was taboo. My drawings became focused on more mature subjects and styles. I began to draw, for example, scenes of the slave trade instead of costumes when my interest in history shifted to the Civil War era.

Indeed, I struggled even with my special interest in history. While it can be a mature and sober pursuit, it had initiated via a children’s book on dolls from the Victorian period. My readings turned from child appropriate texts to thick novels and non-fiction accounts. I think I would have turned to them even without this pressure, but I don’t think I would have been so strident in avoiding books written for children my age. Perhaps I wouldn’t have mocked them as harshly.

My own sense of aesthetics was also to be challenged anytime it might co-inside with “childish things.”

One thing I couldn’t rout out, though, was my interest in fantasy and magic. I did try to limit it to “classics” of the genre though- instead of contemporary young adult fantasy I read T H White, CS Lewis, J R R Tolkien, and similar almost exclusively. The exception was in the school library, where I read every vampire novel I could get my hands on. Even there, though, I tried to form a preference for classic, genre development specific stories such as Carmilla. I don’t regret this, as it did eventually develop into my sub-interest in Gothic Victorian Romantacism which I indulge in to this day. I did take joy in it, but I trained myself to limit my expressions of that joy.

Fairly early on, before things became more obviously abusive, my expressions of joy and comfort were limited. If seen on a timeline, this was the “first” target, though it is one that regretfully many parents of Autistics target. Flapping was eliminated. Bouncing was frowned upon. Toe walking was framed as inappropriately timed and poorly executed “ballet” play. (I was interested in dance when I was very young, but by this point I was not.) Wiggling my fingers was wrong. Even those “allistic stims” of leg jiggling or finger tapping were a basis for censure, pointed to as proof that I was unthankful, impatient, and willful. The only acceptable forms of joy were smiling and sometimes- and only when deemed appropriate- laughter. Seeing as how smiling wasn’t an automatic thing for me, especially when feeling simply happy, this didn’t become terribly common.

Children need models rather than critics.
– Joseph Joubert

This post has gone much deeper and longer than I ever thought it would. It has been harder to write than I truely expected, even after thinking about it and predrafting it in my head for a month. I’ve decided to save the second half for another post, which you should expect tomorrow. It covers the working through and reclaimation of joy, among other things. EDIT: The second post, On Childish Things II, has been posted.

This post is dedicated to my mother. Without her, I would have been forced into institutional settings and would never have been able to move beyond this to reclaim joy.

I was recently at a conference when I was confronted with an intent vs impact situation. I won’t go into the details- I was satisfied beyond belief by how the conference manager tried to remedy the situation- but in the aftermath, I realized it was time to write this post.

You see, when the conference manager tried to address the situation, the individual- who had said that I “wasn’t Autistic” and in response to my reaffirming my diagnosis “but you seem so nice”- responded that it was all “meant as a compliment.” This is not an isolated issue, as any number of advocates can tell you. Being a person with a disability can sometimes mean you get the “compliment” of being told that you “don’t seem that disabled” or that you are “so inspiring.” It also can mean that when you get upset about this, people pull out their intent.

But here’s the thing: intent isn’t magic. The fact that you were intending to pay me a compliment doesn’t obligate me to be thankful when you say something that reinforces stereotypes about people like me, or when you say something that can make it harder for me to get supports. The same system that tells you that saying someone isn’t disabled is a compliment is also at the same time telling people it is okay to say dehumanizing things about PWD, because we are other or aren’t “nice” or are all the things that you are not associating with us.

Neither does your good intentions  insulate us when we are in a position where we aren’t looking so “not disabled.” The gentleman’s insistence that I wasn’t like the kids his wife teaches didn’t stop me from having a shrieking sobbing meltdown in my county assistance office this week over something I couldn’t recall. In fact, his remarks fueled the same culture that I catch myself falling into by accident by thinking, “good thing I was the only one in that waiting area.” His intent doesn’t stop me from the horror that is finding myself thankful for the assistance office secretary not calling the cops or the ambulance on me, which is a real and present fear every time I get overwhelmed or frustrated with myself in public.

I should never have to feel thankful for people treating me like a human being. Not even when I am at my most incomprehensible impossible to communicate during states. Not even when I’m at my most obviously disabled points. I should never have to thank a stranger for allowing me to exist.

Your intentions don’t mean that you aren’t holding up a system that asks me to give thanks for these things. Intentions don’t mean your impact is mitigated, doesn’t relieve you from being implicated in a system that one day will say I’m not needy and the next that I’m too needy to be seen as fully human.

Don’t worry, I (and every person with disabilities who has been around long enough) know that you call us human, we’ve had you and so many others tell us all about your intent. But your intent and your actions just don’t line up, not really. I want to believe it when you respond to my concerns that you don’t think x bad thing about Autistics or about PWD or… But your actions tell me differently.

Your impact reminds me that all of this, all the things in our culture we are socialized with say that your intent makes you a good person. That your intent makes you more accepting and worthy of thanks than the general public. That of course your actions won’t perpetuate the group think that says those horrible things you say you’ll never say.

It also reminds me that you’ll still say them by accident, because those horrible things are a basic intrinsic thing in our culture that we have to watch for. That your privilege means that you won’t remember that the things you say about how unusual it is for me to be nice and Autistic are hurtful. That you don’t have to worry about how able is “normal” and disabled is “bad”. It means you’ll laugh at the joke in the men’s room about hand flappers, and that you won’t blink when you watch a movie where the murderer rocks to himself. (I watch those movies too, I’m a fan of horror and what not, but my goodness do. I. Blink.)

So no, I’m not thankful for your good intent. And it’s not that I’m not capable of being thankful.

I’ll save my gratitude for actions and impacts that help not harm. I’ll give thanks for the thousand tiny actions that are good, intentions or none.  Indeed, I am thankful every day for such little things, and some days for huge things.

I’ll find myself thankful when my mother opts to have a conversation with me via instant message even though we are in the same room. I’m thankful when someone helps me with a form or reminds me where I’m headed, regardless of if they know why I’m needing help. In the same assistance office where I melted down, I was thankful that my intensive case manager being on the ball meant my meltdown didn’t relapse over and over the rest of the day.

I’m thankful for having found community with my fellow Autistics and other PWDs. I’ll be thankful when we manage to balance a bunch of different food restrictions that sometimes contradict- after all, that is an accomplishment with or without intention or culture!

I’m still not going to be thankful for your good intentions. I’ll save that emotion for the good impacts.

_________

A quick note: I’m only posting this today because of all the “I’m thankful for” posts. If you are looking for something about Thanksgiving, I’d encourage you to do what Occupy Boston is doing in centering indigenous voices. “No to Thanksgiving” is an excellent history piece you ought to read. There’s a list of Indigenous tumblr-ers for you to follow, Blogs like Native Appropriations to read, Or check out the tags on other multi-topic blogs. Sciological images has a Race/ethnicity: American Indian/Aboriginals tag, for example.

I made it down to an occupy/decolonize site!

I am in the DC area this week for a variety of things. So Tuesday afternoon I went down to the site at McPherson Square for a couple of hours. It was significant for me in part because although I’ve been really active with work groups at Occupy Pittsburgh, and been doing a lot of Occupy/Decolonize disability work, I’ve yet to make it down to any physical site. (Mainly it is an intersection of disablity and transport issues.) So it was exciting.

I stayed for a while, but I ended up leaving 10-15 minutes earlier than I had intended. Turns out the people in the tent behind the sidewalk where I had plopped down were Ron Paul supporters, and they got their supplies out and what not. I decided I’d rather not have my disabled self be used to create support for someone whose policy platforms tend to be counter to the needs of people with disabilities.

I made a youtube video of a portion of my time on site. (And yes, it is captioned, thanks to Universal Subtitles.)

The reason this is getting its’ own post and not getting lumped in comes from a comment on this I got from Urocyon on Google plus. She commented about how even thought stimming makes her feel like she’s releasing tension from trying not to, it is uncomfortable for her as an adult to stim in public.

I responded with-

 I think that those feelings is what makes rocking or flapping in public so… well, revolutionary and powerful. Because we’ve had those thoughts that it’s bad or wrong or something to hide ground into us to the point where we doubt ourselves and our right to exist as we are in public spaces…

Rocking and flapping and spinning and humming and pacing and racing and- well, and stimming some how becomes a challenge to those things we’ve internalized about our rights to live as we are. It is somehow this reclaiming of some part of us that we love but that we were told is wrong.

We have been told that these basic steps of self care- and that often is what it ends up being in a way- are wrong. Quiet Hands and You look like /are acting like a R[-word] and people will think you are crazy and countless other stories, these are the things we were told from a young age about how we are bad and wrong. We are trained fiercely to assimilate into a world that doesn’t want us, but other people in the warm bodies we inhabit and strangers they can love to move in behind our faces.

The week before I sat in the park and rocked, feeling my defiance, I spent several nights wishing I didn’t exist. I knew all the things I talk about here intellectually, but that base part of me is still filled with the remembered abuse of my past. The most prevalent are those that were excused at the time as treatment while speaking words describing me as a burden and my being as a barrier.

So, in the face of stress, the only answer that came to me is that I should not exist. I sat rocking and blubbering the late nights away while my sister was sleeping fighting those things from my past that still live in my head. This time I won, but today I saw a friend who was saying of herself the same things- I should not exist. This is a friend who is passionate about her rights as a person with disabilities (among other things), and still the thought- I should not exist.

When the things that make up a part of who we are is so suppressed, how can it not be revolutionary to rock in public? How could I not include this part of myself when protesting a system that treats people without economic means as worthless? Why shouldn’t I stim in the face of a world- one both outside and inside- that tells me that I, too, am worthless? (If you are new, I am indeed fond of rhetorical questions.)

I am stimming 1000 revolutions a minute when I go out and stim at a protest. I’m being Autistic, fat, disabled, queer, poor, covering, and many other things in public when I am in public, and being visible here is bringing all of those things out and into a space where revolution can happen. I am speeding our revolutions while joining their revolutions, even if it is only that tiny amount that visibility brings.

But revolution can happen in places that aren’t big protest sites too. Protest can happen even when you are alone, the only person to see it yourself and the only mind it will change is that part of you that believes what we’ve been taught. That is revolution at the most basic element- being able to change our own minds to make a more equitable world.

So yes, I rock (and flap, and…) 1000 revolutions a minute. We all do, when we dare to be who we are without apology, and dare to confront that which tells us we shouldn’t exist or aren’t worthy. We do when we dare to exist freely as people with disabilities, as Autistics, as all of the things we are.

We are a 1000 revolutions a minute.

Republished at Persephone Magazine November 28th 2011.

So, you are getting a post abut my latest DC trip.

I came down via plane on Sunday. I had NARP meetings all day Monday and half the day on Tuesday. I went down to the Occupy/decolonize DC  site Tuesday afternoon, which I’m writing another post on.

Wednesday night was the ASAN 5 year anniversary dinner. I do have an album for pictures people took of me at the dinner on Facebook, but I didn’t have a camera myself. I believe that Melody Latimer is looking for photos from this event for the ASAN anniversary edition newsletter? (If you have any, send them to mlatimer@autisticadvocacy.org- or you can link/tag them?)

Since I arrived early, Claudia had me help with some set up stuff.

I personally was a little exhausted by all the social-making there, though Ari Ne’eman’s and Sharon Lewis’s speeches were fabulous. I was feeling a bit overwhelmed and had stepped out of the room for Alexa Posny’s speech, though. The desserts included creme puffs shaped like swans and chocolate covered mousse shaped like mice. Corina did take pictures of our desserts, but Corina hasn’t uploaded her pictures yet.

I also got to talk to Lindsey Nebeker, Lori Berkowitz and her partner Karen Hillman, Corina Becker, Lydia Brown, Lauren Gilbert, Melody Latimer, Kathryn Bjørnstad and her fiance Sean, and lots of other people. Food-wise, I rather liked these spinach things? I also discovered that Scotch and ginger ale is better than just Whiskey and Gingerale. Who knew?

Nancy Thayler was given the Outstanding Ally award, and Corina and  Kathryn were awarded the Exceptional Services to the Autistic Community Award.

For anyone who was unaware, it was at the National Press Club in DC.  It was probably the ritziest place I’ve ever been, and I’ve been to a dinner at the Ritz in NYC before.

Thursday night, 8 Autistics and one Allistic (Kathryn’s Fiance) descended upon Lindsey and Dave’s house for a total of 10 Autistics for dinner. Emily Titon cooked a Mango Curry Chicken dish. It was interesting to have so many of us all in that house being community.

Scott and I on our computers, while Melody, Kathryn, and Lydia... Do other things while being all Autistic community-y.

At the beginning of the night, we had a bit of a show and tell about stim toys and stuff. Lindsey also graciously let us on her and Dave’s wifi. We spent time in a couple of different rooms on the ground floor. The food took a long time to make, but it was delicious.

Between the Stim toy show and tell and later, I curled up like I do sometimes next to Lindsey's Piano. Lydia then took this photo.

The Next morning, I went to the Alliance for Full Participation conference with Emily and Scott. (Ari came later and helped facilitate a session.) The topic was inclusive employment, and it was rather interesting. I also got a chance to see my friend Bill Krebs while I was there, and introduced him to some ASAN people.

Speaking of “ritzy” places, it was held at the Gaylord National Harbor Hotel and Convention Center. Apparently it is the biggest Hotel and conference center on the eastern sea board?  I don’t know but there’s basically a whole village in the atrium. They do have nice couches? Though I sat on the floor  for the “Town Hall”. . .

Sitting on the floor at the AFP Town Hall.

The Town Hall was HUGE- most of the seats were filled and I didn’t want to have to attempt navigating to find a seat since there were already people standing. The crowd was a mix of self advocates, employers/business people, and providers. It was… interesting.

I also had a few side conversations with both Scott Robertson and Betsy Valnes (at different times) via my netbook and word pad. In fact on my facebook the above photo is labled, “At the AFP Conference Using word pad to communicate in a load crowded room.” (Emily, who took the photo, labeled it “Savannah, looking lovely as always.” I think I look like I have liver failure and no sleep.)

Later on, in a break out session, I sat in a group that focused on starting your own business. It was interesting I Think. While in that group, because it was an anxiety producing situation, I used my netbook and word pad for communication.

I am not at the conference today- I need the day to decompress before I take the train home tomorrow afternoon. (And yes, I do love taking the train- it is less expensive than the plane, too!)

I hope this not-so-issue centered post was okay to read. I find that I don’t particularly find this post all that great, but I did want to get the little slice of Autistics having/building community out there, and wanted to share a DC trip with everyone.