I Do Believe This Is…

Content: Mentions of violence against people on the basis of ability, race, and so on; Mention of abuse.

Friday, March 1, is the 2013 Day of mourning for those PwD whose lives were lost to the hands of their caregivers. Last year, it was at the end of March, not the beginning, which means it’s not quite the anniversary of knowing one of my abusers/caregivers is dead. Last year, those two things fell on the same day. I felt shock and relief mixed into my grief. The shock predominated throughout most of that afternoon.

It’s been a year and a month since Stephon Watts was killed, by police who his family was told to contact for “help,” for the combination of being an Autistic young black male. 11 months since Daniel Corby’s murder. This fall it will have been 20 years since Tracy Latimer’s murder. A month and a half since Robert Saylor’s murder. Almost 80 years since the Nazi’s T4 program. I can post lists and timescales forever, it seems, and it still won’t have all the names it should.

Our dead are mixed in with the dead of others in places where our identities cross, these cross sections boosting statistical probabilities. Stephon’s murder was just as much (if not more so) a factor of racism as disability. T4 blended in to a larger propagandistic and genocidal engine.

There are sadly always many for which to mourn.

This year, we’ve seen violent events, events which have gotten the attention of major news outlets and the dwellings on of news cycles. In these ways, it is unlike our dead- though our dead are hidden in theirs. Instead of joining in mourning, the public uses these deaths as a means to fuel the same bigotries which lay behind the excusing of our deaths and pardoning of our murderers.

Recently, some noticed something terrible, something demonstrating the way in which a certain segment of the disabled population is viewed, when they googled “Autistics should”  and “Autistics are.” Google uses everyone’s searches to guess what your next words will be. Based on the searches in their database, google suggested things like “Die” and “dangerous” to complete the search.

A flashblog (see both “should” and “are“) appears to be bearing some results* in amending the computer side of this, but Google only has the ability to amend what their searches suggest. They can’t amend a code and instantly remove the biases that lead to those searches in the first place. (Though it does help.) Erasing bias a is longer, and more complicated, process than that. A process which is on all of us to work on.

A process that we all need to keep in mind. Bigotry that cannot be forgotten, as it blooms fresh again.

My words here are not as direct as I’d like. I see that my sentences are convoluted, but every time I fixate on them enough to begin translating them out from the word pictures in my head into plain language I feel those things that indicate I’m about to cry. It’s hard not to, when you allow yourself to really have the reality sink in. Terror, relief, grief, anger, sadness, and the sense of ever reaching, all inter-playing and weaving.

Yes, I do believe I’m mourning.

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This year’s vigils are being jointly backed by ASAN, Not Dead Yet, and the National Council on Independent Living. You can find the nearest vigil to you on the ASAN website, and I’m (as an ASAN person) managing the virtual vigil 3:30pm EST-Midnight-ish, with a good friend, That Crazy Crippled Chick, as my second.** This is a cross disability effort; Autistics are not the only PwD to be murdered by those who were supposed to protect us.

* The article in the link is titled in a way that suggests that this change is already in effect. This is inaccurate; as of this writing, Google has agreed to modify their algorithms to eliminate this issue. It has not been implemented  in a way that impacts the user end experience as of yet.

** Or number one, if I’m Picard and she’s my Riker.

Quiet No More- The Loud Hands Project

“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.

Blog Badge- large. A large white person is holding a sign up that says "The Loud Hands Project". Below this image, text reads "The Loud Hands Project" and "Autistic People, Speaking". Below that it reads "Watch the Video. Read About the Project. Support the Work. Visit indiegogo for more about The Loud Hands Project."

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

Blog Badge- Small. A large white person is holding a sign up that says "The Loud Hands Project". Below this image, text reads "The Loud Hands Project" and "Autistic People, Speaking"

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.

A bit of this and that

My posts here tend towards single issue posts. I rarely post small things, or things I haven’t thought through or so on. (I use tumblr for that…) As a result, I post fairly infrequently- I post on big ideas that take a long time to find words for.  But I feel like I ought to post something, so I am putting this post together out of pieces. Maybe it will lose me some of the things that people think of me but… well, I need to think something of all this as well, don’t I?

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?)

Savannah, a large white looking person in a grey dress and black kerchief over reddish hair, and Claudia Alderman, a short Latina woman, in a fancy dining area standing

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.

A view from over the back of a chair of a bunch of people of varying genders, sizes, and ethnicities on floors and chairs and both using and not using computers.

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.

a large white person in a colorful kerchief folded over themselves, barely recognizable from a pile of fabric, head on a pillow facing a computer, through the legs of a piano bench.

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”. . .

Savannah, a large white person, sitting on the floor while wearing a brown cardigan and a colorful handkerchief, her netbook perched on her lap.

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.

Ari Ne’eman Appointed to The National Council on Disability

Good News for the Autism community, and for the cross disability movement as a whole. Ari Ne’eman has been announced as one of President Obama’s latest Presidential Appointees. He is currently awaiting confirmation by the senate for a position on the National Council on Disability. You can read the press release on the White House website here, as well as the names and Bios of other Appointees.

This is a big step forward for the Autism Community, particularly (but not exclusively) for the Neurodiversity movement. Ari has been pushing for the needs- and rights- of the Autistic community for years, and to have him appointed to the NCD is certainly the next move in his unrelenting efforts to promote our cause. He has also been involved in cross-disability efforts, an important thing to keep in mind.
There are a couple of pieces about him worth reading if you want some background from someone who isn’t a Blogger. The UMBC article has a lot of information about his childhood and how he got into advocacy, and he has been featured as a leading Autism Advocate in such publications as Newsweek Magazine and New York Magazine.
I have contacted my Senators and President Obama to let them know how pleased I am about this appointment:

I would like to let you know how pleased I am with President Obama’s recent Nomination of Ari Ne’eman to the National Council on Disability.

Mr. Ne’eman has worked tirelessly to make sure that the interests of individuals of all ages across the Autism Spectrum, be it Employment Issues for higher functioning Individuals, Access to AAC Devices for those who are non-verbal, or even in assuring that the lower functioning individuals on the Autism Spectrum are safe from care giver abuse and have access to community based services. His work promoting the causes of the Cross-disability community helps all disabled Americans fight prejudice and give back to their communities.

I am proud to have his voice as the one that is representing my needs as a Disabled American, and look forward to his confirmation, as well as all the work he will do on the NCD. I also look forward to his working along side you all to protect the interests of all Americans though these efforts.

I would like to encourage you all to write similar letters of support; Congress.org is a useful tool for this, but if you don’t want to register, you can look up your Senators and their contact info on this page of the Senate.gov site. If you want to thank the president, you can do so either through the above mentioned Congress.org or on the White House website, here.

Ari is not only an openly Autistic appointee, he’s also the youngest in US history- the previous holder of that title was Mike Lopez at the age of 24. But his experience in disability advocacy is larger than some people ten years his senior- just look at the mini-bio in the Press release, and realize that it is a MINI bio. He just spent this past summer in an internship in DC, and has been very active- both quietly and in the press- over the last several years, all while also being a full time student. With his graduation coming up in the spring, I am looking forward to seeing what he’ll achieve next.