January | 2012 | Cracked Mirror in Shalott

“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

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.

So, I ended up going to the ER in an ambulance New Year’s Day. Don’t worry too much though, I just have pneumonia and bronchitis. Turns out that my body was in pain because my fibro was picking up on the impending illness. I went to sleep Thursday night and woke up Saturday dehydrated and very ill. I didn’t have any minutes on my trak phone, and was alone at my sister’s. When for a number of reasons I couldn’t rehydrate myself properly by Sunday afternoon, I called the only number it would let me call: 911.

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.