Plural of Medium. . .

. . . 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.

Inside and Outside Safety

[Content warning: Mentions of violence towards PwD, both external and internal. Passing mention of the R-word and of a cat dying.]

“If you are silent about your pain, they’ll kill you and say you enjoyed it.”

 -Zora Neale Hurston

I think sometimes when we talk about “passing” versus visibility we forget what that really means, what it is really about. We forget that it means a choice between being safe in the out there instead of being safe in the in here.

It’s a process of making a difficult choice for some of us. Which will destroy us sooner- the violence that others do to us or the violence we do to ourselves? How long do we defend ourselves from the violence that other people send us before we end up destroying who we are inside? Can we live in a world where we can be safe in our own heads without endangering ourselves from the violence of others?

A number of people have written about what it is to internalize oppression- ableism in particular. There’s one phrase I’ve seen that always strikes me- “outposts in our heads.” The place I remember coming across it was at Amanda Bagg’s blog, when it was used- along with the Sally Kempton quote- as the title of a post. Outposts in Our Heads was a big deal for me when I first read it back in 2008. It helped me form into language the things I was noticing about my own experiences, my own terrors, my own damages.

When we internalize the messages that tell us we are unreliable narrators of our own stories, that we are “bad” and “wrong” when we exist as ourselves, it creates violence inside of us. It’s not the physical kind of course- though sometimes people do hurt themselves as a result of this “inside” violence. But that makes it no less violence, no less an attack on our beings.

The more I reflect on my own behavior and the writings of others the more I feel as though a lot of our passing comes from this violence that has been pressed inside of us. Our passing is  an expression, in part, of the thousand little insidious things we were taught.  To remind ourselves that we are wrong, that we are “slow.” To remind ourselves that we don’t count as humans unless we take these “lessons” to heart.

With those lessons is one that gets pointed to as the “reason” for them, why it is so “needful” for us to find indistinguishable. Why the parent I will sit next to in a meeting next week will tell me that they just want their kid to have a shot at pretending to be normal. The outside world is violent towards us when we don’t accept these things, sometimes in more obvious ways.

I don’t think we have to go far to “prove” them their theory on how unsafe it is for us. Neli Latson‘s arrest- Young, black, and Autistic Neli- is proof in an of itself, however much it is also tangled up in racism. The bullying of kids who rock and flap are constantly held up against the bullying of queer youth by some parents, the violence that both populations face sometimes used to outline how bad it is not to pass. Sometimes I even hear the statistics about how 70% of women with developmental disabilities experience rape and that is used as an example of why we shouldn’t be obviously disabled. (Sometimes I even hear this from people who would fiercely remind you that how a person dresses or what they drink doesn’t make them responsible for the violence done to them.)

These things are brought out time and again, these dangers of the world. And too often- particularly when it is our families rather than disabled people ourselves- the solution offered is to teach us to pass. To not behave or exist as we are. To make eye contact and don’t flap or rock in public or don’t jump at loud sounds.

The solutions offered to individuals too often aren’t to make it so police know what to expect from Autistics (as well as unknowing the stereotypes of race), to end bullying through truly inclusive practice, to teach people not to rape and sexually assault people.

We are told that in order to save ourselves from the violence out there we must do everything we can to look normal out there.

And when we do look normal out there, they pretend that no violence is being done to us. Too often, they forget the violence that they did or dismissed to make us this way. Too often, they will always dismiss that it left us with violence in our heads.

As time goes on I try to unlearn the violence that was taught to me. I try to uproot the strongholds that tell me how wrong and bad it is of me, how selfish, to want to be okay with myself. This process isn’t helped by living in a society that reaffirms that all the bad things are because I’m wrong, I’m deviant, I’m disabled and I dare to try not to hide from it.

In June, I attended the Allied Media Conference as a Co-track Coordinator of the Disability Justice Track with A’ishah of ResistDance. Admittedly there were huge chunks of things that were issues in the physical world- for example, some people not getting what “scent free” meant, or staff members forgetting that sharpies can be toxic for some folk, or how incredibly echoy and not sensory friendly having closing ceremony in McGregor was. But the biggest thing for me had nothing to do with my external environment.

It had everything to do with my internal one. I was working so hard at uprooting the ableism inside of me, and yet while I was there surrounded by movers and shakers and hopeful justice makers I found more. I spent a couple of hours one afternoon sitting in a corner, crying and rocking and holding my arms tight. My outside was safe enough- someone even gave me a tissue as they passed. But on my insides the violence I had worked so hard to uproot from my mind was taking over.

I was alone and unworthy and bad girl. Of course you are having a hard time, I thought, you are wrong at the most basic level.  Remembered directives of Stop Crying and This is for Attention isn’t it? and You are selfish for wanting to be safe and everyone knows that retards can’t lead.

I eventually got settled enough to move, to look for my mum in the Healing Justice Practice Space. When I got there, though, it was obvious in ways I couldn’t know that there was a violence happening inside of me to some of the healers. I had some tea, and Mariposa had me do medicine on my self by way of chalking protection at my wrists. It is protection from the elements of the outside that give power to the violence inside, she told me.

And I did come back to me, to knowing that I am worthy and human and deserving of existance. To knowing where those thoughts were pressed into me from. To knowing that it is a violence taught to me.

I won’t discount that the violence outside of me is painful. I can’t pretend that I wasn’t devastated when the neighbor shot my cat Tribble knowing that he was in training to be my therapy cat. I will never deny that there’s still a spot on my back that when pressed makes me panic, to think that my mother’s second (ex)husband is going to put me in prone restraint again. But I think that the most devestating is the ways that violence is pressed inside of me.

I’m tired of doing violence to myself inside of me to avoid the violence that could happen outside of me. I’m tired of having no safe place inside of me because someone might believe that the demonstrations of my disabled person-ness gives them license to grant violence to the external face of me. I don’t think it’s right to give in to demands that I pretend that passing doesn’t hurt me.

This afternoon, I’ll go shopping. At checkout, while I’ll smile at the register and answer questions from the check out person, chances are I won’t make eye contact. Chances are I’ll startle when someone shouts or drops something. Chances are I’ll flap in line, wander in a way someone else’s parent would characterize as aimless and pathological, cover my face or eyes or ears when things are “too much,” flinch when someone touches me in passing unexpectedly. I’ll stare and not be able to process a shelf display or two, and forget how much I need to get some bottled water because it looks like there’s so much stuff in the cart already.

And I will  be safe.

_________

This Post was inspired in part by “Dear ‘Autism Parents’” by Julia Bascom, as well as other writings of her’s at Just Stimming. I highly recommend going over there and reading more of her stuff. I also want to direct people to the writings of Amanda Forest Vivian at A Deeper Country whose writings have been helping to “percolate” these thoughts all summer.

This has been reprinted at Shift Journal.