. . . is Media. And media is how people express and communicate. Your voice is a medium, writing is a medium, art and video and. . . Yes, even poking someone repeatedly or jumping up and down or twitching your eyes in a pattern can be using a medium- your body- to communicate.
Everyone can use some sort of media. Before I get protests, I’m including pushing away unwanted things, fecal smearing, and tiny behaviors as well as examples of use of media. Sometimes our methods and medium is ignored or not understood, but that doesn’t make it less our medium. Sometimes we can’t even define exactly what we are communicating with our media yet, but it’s a process. Sometimes, figuring out what we mean- communicating with ourselves- is even more a part of using media than communicating with others.
When we are given the chance to be exposed to new media, new methods of expression, we are being given access to more opportunities to find the way to get it out right. To find communication. Eventually some of us do gain access to media that other people understand our use of. We learn to speak, or sing, or make music or videos. We paint, or sew, or costume; we write, decoupage, rearrange, and stack. We learn to dance, to write, and to find a new way to get the message across to that it is heard. Some of us aren’t given that chance, and some people even find that other people’s media aren’t for them.
When you are someone whose communication methods or media are ignored when you want them observed, it can be an opening to find a new medium to call your own. I learned to type, I gained those skills, and I suddenly had access to a much larger community than I had when speaking or shrieking or running away or stacking dolls gave me.
Indeed, the way that typing opened up writing to me was a better medium in the end for me than those I already had- my fluency writing now is better than my speaking was at the height of my verbal ability. I can use this medium, the medium of digitized writing by the hitting of keys, in times when I can’t even verbally speak at all, in times where my message as a kid might have been lost in other people’s reactions to my screaming wordlessly because I didn’t have the right words to speak any more.
Other people find other media. Some people won’t rely on their media the way I do. Some people might rely on it more.
How beautiful would a poem in just PECs, just the way they are handed, be?
Some media is painful, or dangerous, or scary- or even, in the case of Thich Quang Duc, deadly. Sometimes that can be powerful, while other times- like fecal smearing- it can be too alarming to observers and yes, dangerous, to get across anything, even your own distress. Sometimes the media we know isn’t sufficient to express what we mean- is your reaction to fecal smearing to recoil, maybe even freak out, or is it to find a way to figure out if someone is constipated? (If it’s the second one, I’m guessing you have a little experience with this cross media translation.)
In some cases, the solution is to find more ways to experience and express experience. Gaining new skills, or discovering alternatives. Other times it might be to just let other people react to you burning soundlessly.
The first time someone walked a friend through other signals for “my butt hurts” or that that type of pain is constipation, she nearly squeezed my hand off in joy.
Sometimes, a new medium is just a great way to accomplish something that you might not otherwise be able to do. Creating a more accurate and useful AAC device- even for less- or finding an easier way to collaboratively caption videos on the web. Applying dance to practical mobility difficulties or exploring how movements can be adapted to suit all types of bodies. Crafting tools to navigate difficult sensory environments or using virtual video distribution to share a larger message.
All media, in practice, in use, building and creating access, building and creating our futures.
What does it mean to build access together? What world can we envision when we apply love and justice to our media to find a world where we honor all people, regardless of ability, and their needs?
This summer, I and others will be attending the Allied Media Conference. It’s not a disability conference, or a topical conference. AMC is just brought together by people that believe that we can use a wide range of media to change the world. Within that larger vision, people with disabilities saw a vision for our justice, for a way to create access collectively.
Creating Collective Access allows us to make accessible the potential of media skill sharing, network, and vision planning that AMC promises to people who might not otherwise be able to be a part of it. PwD and our Chronically Ill brethren face access barriers beyond a lack of ramps and braille. Working together and treating access as a matter of community rather than individual “burden” allows us to be a part of building a world that includes us and the potential we can realize through media.
And in turn, we can make accessible the wider community- the world.
What does it mean to explore and honor our potentials, our media, our vision? What sort of world can we build when access is a part of what it means to build communities? When it is a natural part of the creation of change?
I invite others to write about what it means to you- personally or pon the grand scale- to access media. I also hope that you will help me and others by donating to CCA’s Indiegogo. We all came up with cool things to contribute to the returns. I’m contributing custom writing- poems for cheap but if you put in a lot an article or even ghost writing- and my mom is contributing reiki sessions and herbalist consults. Others are contributing zines, books, films, tarot readings, MCS friendly bath products, and even customized baking. You can find out more, including more details about CCA, on the CCA Indiegogo page.
I know I shouldn’t be doing an “update” post, but I’ve had to delay a lot of the posts I’ve been planning. In the mean time links and things, as well as some plans on what to look for, are ready and I’m pretty excited about them! First I’ll talk about some of the plans I have for the next few weeks, then the things I’ve done recently around the net, and finally some of the things I’m excited about that aren’t mine. Ready? Fantastic! Allons-y and Geronimo!
Look for a post about the Allied Media Conference, as well as on how access to various types of media has helped improve my life here on monday or so. I’m co-coordinating the Disability practice space- creating collective access- this year, and I’m really excited about it. (If you want to blog/write/make videos/make art about how media has improved your access, let me know!)
I’m also working on a post about the issue of ableism and classism combining in the practice of telling low income families to call the police when their kid has a meltdown instead of services. I’ll talk about an IEP meeting I had, and I’l talk about how the added factor of racism resulted in the unnecessary death of Stephon Watts.
Elsewhere on the web. . .
If you haven’t yet, please go check out the Disability Right Now blog. I’m a staff writer as well as the PR head. We are wrapping up a blog event about George Hodgins, Euthanasia, and Eugenics this week. Next week, I have a post on Disability History 101: the origin of institutions going up for my post for round 1. Also, I worked with the EiC to do an interview about it for ASAN which will be in their April newsletter! Whoo!
Not Quite Web Stuff:
This week I’ll be going to Chicago to co-facilitate for the Illinois state team at an Allies in Self Advocacy Summit. It’s exciting, of course, though at this point I will basically be at the hotel and the airport.
I’m going to be going to a couple of Rallies in Harrisburg, PA this spring. The first one is on Women’s Rights, and Amy Caraballo is one of the organizers. It’s April 28th, and it’s complicated- but I think it will be important to be a PwD at this event.
The Other is May 2nd about the cuts to services for PwD that our current administration here in PA have been pushing. The PA Waiting List Campaign is heavily involved, as is Vision for Equality. I hope to see lots of people there! I’m going under the auspices of SAU1, but I’d love to see some ASAN representation or even NYLN representation!
It’s pretty scary stuff. So far: Disability Rights Network of PA and a whole slew of disability orgs here in PA have filed a suit against the Corbett Administration; Issues with Access to areas of the Capitol for PwD; and some fairly rude treatment of Protesters. (Rendell’s administration regularly sent someone to meet with Protesters with disabilities. Corbett’s ignores us or tries to create barriers to our exercising free speech.)
I personally feel sick over our current governor here in PA’s tenure. But then, I didn’t vote for him. I voted for the other guy. If you are in PA (or anywhere in the USA actually) please register to vote and read up on the issues. Help other people who might have barriers to getting in to vote- especially PwD- get registered and in to the voting booth or registered early enough for absentee ballot or alternative ballot. Last year I almost couldn’t vote because my absentee ballot came late- thankfully the plans that would have taken me out of town were cancelled.
Too often, PwD don’t vote because of a lack of support or people ignoring that we might want to. In the current political climate, it’s especially important that our voices are heard and votes count. You can find out more about getting out the disabled vote from the Disability Voting Coalition of PA.
Other People’s stuff:
Babble.com is doing a Top 30 Autism Blog ranking, and the voting is now! A number of my friends are on the list and are blogs I’d recommend reading. (Along side some I’d have you avoid, but that’s your business.) Good Luck to Lydia, Julia, E, Stimey, “Autismum“, and Thinking Person’s Guide to Autism!
[Content: Abuse, ableism]
I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.
Let me explain- it’s not that I’m against someone deciding to learn a new skill that they want or need to learn to achieve things that they want. I’m not against teaching a kid of any neurology new things as they explore their world. But there are some things that aren’t worth the trauma- the long term emotional damage- of how they are taught. Or, at least, of how they are taught to Autistics.
Recently, I was teaching a friend how to do dishes. Step by step, gently, with examples and tips. Feel as you wash- if you feel any grease or food bits, it’s not clean yet and you need to keep scrubbing. Later, I paused in the middle of pouring myself some water. You know, that’s not how I learned to do dishes. I learned it traumatically.
My mother was working when we first had “big” solo chores. We rotated chores between all three siblings. My mother’s second husband, whose death I talked about in my last post, was the adult on hand for chores. He herded me into the kitchen, and told me to do the dishes.
It wasn’t “casual” ableism that he used then. It was fierce and directed. He loomed over me when I said I didn’t know how, and used it as “proof” that I wasn’t really smart- the only alternative had to be that I was lazy. So I tried doing the dishes while he went off to do his thing. I pondered on the fact that there’s cross cultural archetypes of Cinderella while I tried. When I finished, I would declare it with relief.
He would loom again, and wave the dishes in my face. He would tell me I was obviously trying to get out of doing my fair share, because they weren’t done right. And so I did them again, over and over. I think I threw up a couple of times at first- I hate the oily texture at the bottom of the sink when people fail to scrape their plates, and the smell of used dish water. Letting the water run was not allowed if Rick was watching, so the smell and oilyness of the first rinse was there, while the soap bubbles waited in the second sink for a rinse. Not even gloves were an option- instead, I was to learn to deal with the sensory assault that was my “fair share” of keeping the household.
I believe he enjoyed his use of humiliation. His combination of verbal and physical intimidation was effective in eventually teaching me basic skills like this, the very technical skills that are the building blocks of independent living skills. The process was repeated with a lot of skills and “skills”. Vaccuming and laundry went hand in hand with passing, with not looking “crazy” and not echoing “nonsense”.
The Wise man doesn’t speak what he knows. And I wanted to be wise, because according to Rick, no one would believe I was competent.
It was better when my mother was home, but there would be little reminders that would just seem stern without the context that happened when she was at work. But the repetitive enforcement of my lack of skills, of how bad I was at covering, at passing, was just as destructive if not more than the times he loomed over me. The same things I observe being used to teach kids with similar behaviors today were the hardest part.
When the inevitable meltdown happened, it seemed, from the notes she took, unprompted or triggered by things that were relatively innocuous. That’s not to say I wasn’t easily triggered before, but they were always specific things, things she could figure out.
Rick had been gone for more than 5 years before I could articulate half of what happened to me. It was two more before I could do it well enough to get it across to my mother how much she had missed.
The damage done in the name of teaching me skills isn’t worth the skills. It isn’t worth the years of self hate, the years of denying myself the services and supports I needed in order to prove his tirades wrong. It isn’t worth the nightmares I still have of his eyes when enduring forced eye contact.
Look me in the eyes. If I let you grab my chin and point it somewhere- especially at a face- you know I trust you.
You want to talk about how hard it will be for your son? How you just want your daughter to get married some day? Stop. Stop thinking about your own wishes, your own images of how your kid’s life will go. Look at the skills they show interest in. Find what they are personally ready for, instead of what some book says is “developmentally appropriate.” Let them build their own image of what success is.
Because the trauma of forcing someone into a schedule they aren’t ready for? Of forcing unneeded skills? Of removing non-harmful but socially difficult coping skills? Of holding up your own wishes and ideals as the goal?
Isn’t worth the trauma.
[Content: Abuse, Ableism, murder, death, grief, relief, and feelings about these things.]
This time last week, I was getting ready for both the DC and virtual vigils for People with Disabilities who have been murdered by their family or care givers. This time last week, I was also learning that my primary abuser was dead.
ASAN and other groups around the nation (and a little bit beyond, too, on an individual basis) held vigils for People with Disabilities who have been murdered by their care givers. You can read about the details of why “now” from Zoe Gross writing for ASAN, as she addresses that better than I could in the call to action for the vigils.
The bottom line is that we live in a world where our basic blocks of culture devalue our existence to the point where our murders are called Mercy Killings. Our murders become about the burdens we place on our parents, on our cost to society, and on non-disabled people’s projections of our possible quality of life. Even our names are erased, made eternal children regardless of our age of death because of who it is who killed us. George Hodgins was 22, and still the headline read “Sunnyvale Mother Kills Autistic Child.”
When I was a child, Rick, my mother’s second husband, excused his abuse of me as treatment. The less excusable stuff he saved for when my mother wasn’t home. Sometimes, he even baited me, purposefully getting me wound up so that I would act out in a way that would justify what he wanted to say or do.
And people believed him. The cops believed him the one time I got the nerve to call. The parts my mom saw made her believe him, at least for a while, and her notes about the behaviors he triggered are scary. In them, I look irrational and dangerous, while in my memories I was provoked and terrified. Without knowing the cause, a kid like I was screaming, or charging to escape, or throwing myself into walls is scarier than I ever saw myself. He played my needs to suit his and to make the unacceptable acceptable. He provoked the worst to suit his own behaviors, to make sure I fit the idea of deserving what happens that we are fed daily.
When the vigils were announced, I decided that those of us who couldn’t make it to a live vigil should have to right to hold vigil as well. It’s an emotional topic for me, how people from rural areas and housebound folk are discounted in movements. Even in the (broader) disability movement, there’s a tendency to devalue those who can’t make it out to a vigil or a rally. It saddens me, it angers me, and it motivates me. So last week was spent preparing for the virtual vigil.
When the time came, I was able to do it from the Washington, DC vigil’s site. We used tiny chat, and it was kind of cool. I had everything prepped for the time, I only had to show up and do it.
Then, Friday midday, I called my mom and heard. I heard that I was free. That the constantly looking into the crowd in fear he would be there could no longer be fulfilled. That we knew where he was, and knew he’d never be able to inflict harm on me again. That all the damage is already done. That he had died, natural causes, in Pensacola, Florida.
I went into shock about an hour later, though I had thankfully managed to meet up with Melody Latimer by the time it hit full force. Thanks to her, I didn’t accidentally walk into traffic or misstep off the metro platform. She made sure I got myself food if I wanted it, and then plopped me down in a safe space so she could work and I could process and come out of it.
The same time that I was mentally preparing myself to run a chat vigil, to mourn fellow people with disabilities, I was writing a letter to friends to tell them about the end of my own nightmare. As I prepped on site that evening, I realized that I would no longer have to fear death from his hands. As I reviewed the list that managed to fit on the fliers, I realized that all it would have taken was a slip, a weight distribution in the wrong area during restraint, a swerve when I tried to escape the car, and my name could have been on that list. That that list is truly my peers.
When a gentleman came up before the vigil and commented that we had forgotten a certain little boy whose mother had poisoned him, all I could do was thank him. The number of names that could fit on the flier or the poster board is such a small percentage of the names and stories of those killed by their care givers. It’s a countless wordless horrors, the murders that society mitigates because of our disabilities, the deaths inadequately mourned because our would be mourners are told people like us would have been better off.
I feel sick, too, to think of how many of them might have been stopped if only our world didn’t dismiss our abuse as needed. If our lives weren’t devalued, how many of the PwD who were starved to death before the neglect was noticed would be part of that count? How many people would be growing older and living if the tiny abuses and dehumanizations that make people justify murder weren’t justified by disability? If we lived in a world where my abuser hadn’t been able to get away with it as long as he did would the people we mourn still be alive?
The virtual and in person DC vigils went well. We remembered. We tore down the excuses and justifications. We mourned.
In the hallowed out space of relief, I remembered what we were fighting for. Just because one of my nightmares was over didn’t mean my future was safe, or that other people’s nightmares couldn’t come true.
One week ago, we observed the deaths of the people for whom our fight for equality comes too late. We hoped to someday never see a new name on the endless list. We hoped to change it all, one day at a time. We mourned our dead, and renewed our commitment to fight like hell for the living.
The next day, Daniel Corby, aged four, was killed by his mother.
I recently put together a video of me Stimming in Public. Regardless of the reception (which has been great!), it has always been intended as an ongoing project for this year.
If you have been following me on facebook, you might have already seen the video I recently put out. In it, I document myself stimming in public spaces during my recent Baltimore, MD and Washington, DC trips, all set to “America” by Orphan Songs. (I really liked the song, and feel so glad that the artist had it up for Attribution and Share Alike use via Creative Commons.)
Some of it was organic- I was there, and happened to think of pulling out the camera on the train, at baggage claim at BWI, and at the Baltimore Waterfront. Others were planned in that I went there with the intent of shooting some video. I spent a long sunny day at capitol hill filming at the Supreme Court, the Capitol building, Library of Congress, Department of Health and Human Services, and the Department of Education. It was both exhausting and satisfying, not just as an art effort but also as someone who was made to feel scared of the potential actions that could be done in the name of these places.
(There are captions at youtube of the song, even if they don’t make it in the embed.)
This, as I’ve mentioned, was never intended to be a one-shot thing for me. I mean, I’m going to be doing the stimming when I’m in public anyways, so I might as well film it in case it does something positive for someone else, right?
Therefore throughout the year 2012, I’m going to be putting together a video of me stimming in public for every major trip. I’ll try to get some interesting/meaningful locations in when I can, but most of it will just be what I have access to since almost all of my traveling is for advocacy events.
Between now and July1st, I know I’ll be going to Harrisburg, PA; Chicago, IL; Seattle, WA; Woodburn, OR; and Detroit, MI. Later in the year I’m hoping to get back to Washington, DC and to visit family in the area of New York, NY; Wallingford and Hartford, CT; Providence, RI; and similar locations. (I’m really hoping on the CT-RI trip to get a chance to film with some people in front of the JRC!)
If I get more things scheduled later in the year, I’ll be filming at those as well. It’s basically an every-chance-I-get thing for filming these. I mainly will be doing them on my own, though I hope as the year goes on to be able to have multiple people in the shots with me. Indeed, I’d love towards the end of the year to have a chance to film a bunch of people stimming together at once. I think it would be really. . . evocative, to end a series with a community together, when it started with me all by myself. But that’s just a thought, not a plan.
That is the project summary.
I don’t want to act like this is an idea that is exclusively mine. First of all, I’m sure I’m not the first person to think of it or do something like it. Secondly, all I’m doing is filming myself living life as myself, something I hope to have be a reality for all Autistics. It’s scary, but someday it won’t be. Someday I hope to meet young Autistics who were never afraid to stim in front of Authority, who never had to deal with the ableism it can be met with. Autistics who won’t have to make the choice between safety inside of their heads vs safety from people’s bigotry outside of it.
That being said, if you decide to do something similar, let me know! I’d love to see members of our community going out there and doing this if they feel so inspired. I feel like that would be something amazing to see.
Often, but especially this month, there tends to be a false equivalency that gets promoted- that Neurodiversity advocates ignore the hard things, or that we don’t experience the hard things. From there, self-advocates are told that we can’t speak to the lives of other, usually younger, Autistics. Obviously this is false. The hard things are a part of our lives, are a core part of them.
On the 18th of March, I had to go to Baltimore. To manage airports, I have a pretty set script that I follow in order to make sure that I make it through the airport and flights. Usually it works fairly well, and if I get confused I let a security person know I”m Autistic and it typically works out. The first time I went through security by myself, I had a TSA agent walk me through the security point step by step. (I have a soft spot for Pittsburgh, PA’s TSA agents as they’ve treated me fairly well. I can’t speak for anyone else’s experiences though.) I’ve had people let me be or give me appropriate instructions when I’ve lost words. Mostly I have decent experiences. Not as peaceful as trains, but decent.
Except this time I flew southwest, and their gate check process is different. Instead of picking your bag up at the gate, they put it through to the carousel in bag claim, and instead count it as a late bag check. A bit nerve wracking as I rarely if ever do a regular bag check. But this wasn’t the hard part. Nor was sitting on the floor next to the assigned baggage carousel for an hour. (I took video of myself rocking there, and it is edited in with other video on my youtube channel.) But by the time I got through what my bag looked like, I couldn’t verbalize words any longer. The words went away. Thankfully the BWI Southwest baggage customer service acted like it wasn’t unusual at all for someone to get out a netbook and start typing instead of talking. I also had to get help getting on the van- which was directly across the room- to the hotel.
That evening, I had to leave dinner because I couldn’t sit upright any more. My brain was completely done, and I poured coffee on the table because I could no longer judge where my cup was in space. The next morning, I couldn’t get out of bed because I had no clean clothes. The very thought of putting on dirty clothes Shut me down for hours. Thankfully, the thing I was at was Developmental Disability centered, so the organizers were understanding, ordered me lunch, managed dealin with the airline and hotel, and the person I was supposed to facilitate with took over my duties. (Thank you Nachama!)
And this is only a mildly hard “day.”
Even the tiny Hard things add up. Loud noises making me need to hide, camera flashes leaving me utterly disoriented, the wrong smells, colors, and textures- the little hard things could make me have issues where I would normally have none or even where I’d normally excel. I curl up in a ball in a grocery store because I don’t know the practical steps rather than economic difference between using credit and debit. I sit on floors in airports for hours because I can’t figure out the steps to get to my hotel. I get C-Diff or MRSA because I can’t remember when to clean. I pee myself because I hear the wrong noise and become scared. I can’t tell until the last moment that I need the restroom, and then I better get running before I forget or lose control.
A thousand tiny hard things.
I had to live off campus because I didn’t understand paperwork for housing and couldn’t figure out that I needed help. I had to drop out of school and became house bound for 6 months because I didn’t understand or know how to ask for help with school tuition or paperwork. I watched my carefully laid goals collapse, and can’t do anything beyond repress and hide when people I know graduate or talk about completing midterms. I lose my ability to conceptualize my goals after having plans go awry.
A thousand hard things.
Becoming homeless for a thousand tiny reasons. Being unable to navigate the housing system, and having to rely almost entirely on my Intensive Case Manager to even fill out the forms let alone deal with the people. Having difficulty with a form because I want to answer truthfully but have no idea how much people have spent buying me toilet paper- and then crying, pacing, yelling the same phrase repeatedly and staring at blank walls. Hiding in my 3 year old niece’s closet because I can’t calm myself, can’t process my environment further to get away from what is bothering me. Being trapped in town because I can’t speak that day and I need to find a way out.
Knowing something is wrong, large or small, and not having the words for it for 5 years. Being told I’m articulate when I can’t get my basic needs across to be met. Trying to report abuse, and not having the words to articulate it yet- then having my call dismissed because of my disabilities and inability to articulate it. Pressing myself into walls or running into them full stop because the pressure is soothing and I can’t get my world to stop- and then being treated poorly for daring to do so. Being put through unneeded procedures because my self soothing behaviors look scary to others, and echoing (oh echolalia!) their words back when they ask why I do them- Is it because of self hate, self loathing? Do you want to die?- because I don’t have the words yet to tell them how it really feels in my head.
Life is full of hard things.
But the hard things don’t make that life less worthy. It doesn’t make it okay to deny accessibility. It doesn’t mean you can’t adjust a little- and often to mutual benefit- to make the world more navigable to us.
The Hard Things don’t take the joy out of it. It doesn’t make the self soothing activities less self soothing. It doesn’t take the joy of observing the infinite diversity of our world within even human neurology- a joy that we can share, if we are willing, despite having infinitely diverse faiths or even having none at all. It doesn’t make my niece’s bringing me my stuffed cat less an act of love. That my former cat, ‘baka, was my service animal that I needed to help me self regulate doesn’t make my affection- nor even my grief at her passing- less deep.
The Hard Things, though, mean that you will look at them and say:
I don’t want that for my kid.
That is not safe.
That is too strange to do in public.
If you’d only “pull yourself up by your bootstraps” and get over it, the hard things wouldn’t be hard.
Your tears and meltdowns prove my point of your incompetence/that you will always be a child.
instead of finding a way to make the hard things livable. Instead of accepting that I need help today even if I didn’t yesterday. That I am an adult who is able to make my own choices- even when they are bad ones. That the reason it’s so strange is because of repression. That there are ways to make this all safe. That risk is a part of being human.
That there is joy in being one’s self.
Written for Autism Acceptance Day and Month. Many Thanks to Paula Durbin-Westby for originating Autism Acceptance Day and all the effort she has put into this event- please go check out some of the other posts she’s collected. Thanks also to Emily T for her sharp editorial eye.