Official AutPress Statement on the TASH Response to Slate

Encouraging update!

Autonomous Press and TASH had a very encouraging meeting this morning on the topics of Communication Justice and research.

TASH reaffirmed their powerful commitment to human rights and quality of life for people, which puts us clearly on the same side, and so we look forward to a fruitful partnership.

Stay tuned for more detailed news about future developments soon.

 [Ed. note: We want to make it as easy as possible for as many people as possible to see this statement of our principles on communication justice. So we reprint it here and invite you to reprint it on your own blog if you wish; to see the original, go here. Thank you very much for your attention, and for helping us stand strong in defense of everyone's right to communicate. -Ib]

Following the statement from TASH regarding their official stance that they will not support or directly endorse facilitated communication, the partners at Autonomous Press have decided that we cannot do business with the organization or any representative acting in their capacity as such while this policy is in effect. As a press started by a majority autistic partnership, one whose own members type to communicate frequently, we do not feel comfortable attending, selling at, or promoting this organization or their events in any way.

We make this decision with a heavy heart. Many of us have friends on the board. In addition to that fact, though, one of our editors on Typed Words, Loud Voices, our groundbreaking anthology of typers, is herself an FC activist. She has presented at TASH to specifically address the ways she communicates and barriers caused by false and ableist skepticism leading to poorly designed and agenda-driven “studies.” We can only imagine the strain that this institutional decision has placed on her, implying as it does that TASH does not stand behind those that they invite to share their knowledge and ideas.

It is out of a desire to make our commitment to representing voices like hers, and not to privilege some forms of accommodation and some forms of communication over others, that we make this move:

Until TASH officially embraces FC and the right of all disabled persons to communicate with the methods they choose for themselves, Autonomous Press will be forced to avoid the TASH conference, withdraw outreach funding from any travel grants being used by TASH presenters applying for our assistance, and withdraw our memberships (for those of us who are members). The partners are also asking that AutPress authors who wish to present at TASH during this period, however long or short it is, do so without promoting the books they have published with us or directly tying them in to their abstracts (casual mentions are fine).

We are happy to fully embrace any organization within our community that supports and embraces our mission and the authors we represent. When an organization leaves itself open to the idea that the books, presentations, and other intellectual work by facilitated communicators are not genuine, that is the same thing as stating that they are open to the idea that we have created false or counterfeit scholarly work. It’s unfortunate, but we cannot have a relationship with organizations that take such a position and declare it to be principled.

We look forward to communication justice becoming, once again, a priority for TASH, and await a new institutional statement showing it.

On Stigma (Ode to the Secretly Neuroqueer) by E.J. (Ibby) Grace

It is a very serious problem that for many people, the heavy and unfair stigma attached to their disabilities forces them to live "in the closet" in order to be safe.

I was just thinking about definitions, and for me, my being neuroqueer means I'm both neurodivergent and deliberately fierce and fabulous about it.  But this way of living was not always within reach for me.

You can be secretly neuroqueer. You can be secretly fierce and fabulous while keeping yourself safe. Be who you are with people you can trust. We are rebuilding the world so that we can all reach a point where we don't have to keep worrying about the very real repercussions of our labels.

If I'm talking to you, and you see yourself in this, love and solidarity. I have your back, and there are many others like me who feel the same way. Please pass this on to others who may be wondering if anyone could ever understand.

There Is No Case Without D. Johnson's Testimony.

When I came of age a quarter of a century ago, people with intellectual and developmental disabilities were often classified by “mental age” based on various test scores. If they were adults, but called a “mental age” that was less than their chronological age, it was widely assumed that they could not be interested in love and sex. After all, “He’s just like a three year old.”

That was offensive then, and it’s offensive now.

A woman was discussing her daughter with me once, back then. Her daughter was older than I then was, but deaf, without having had much access to the culture. The mother was talking to me about the daughter’s business because she wanted me to convince her to get off birth control pills. What could she possibly need with those? She was not interested in sex, according to her mother, because “She tells me everything. I would know.” I was uncomfortable with the conversation but I did point out that if I were hanging around with my mother in the mall, having a root beer or whatever, I can’t imagine myself announcing “Nice ass” or something whenever someone attractive passed by. She’s my mother. Boundaries.

To her credit, this woman had an epiphany then and said she would not ever have discussed such things with her own mother, either. She realized that her daughter, who was then about thirty, could decide for herself whether she was interested in men, and what to do about it, without maternal input.

Twenty-five years ago, this was.

A few years after that, the Health Sciences University around there wanted to do a pilot project of peer education on safer sex, for AIDS prevention. There was a huge outcry that people with visible Down syndrome, for example, were involved in making video tutorials in which they mentioned sex. This would be a terrible “example” and “corrupt” the “kids,” to hear the detractors tell it. These “kids” were adult – even middle-aged – and were already well aware of how to have sex. Even when the medical school students said that not knowing about how to have sex in safer ways might kill people, many of their relatives tried to block the program.

Around that time, someone I knew who lived in supported apartment housing fell in love with a homeless young man. Because her “staff” wouldn’t “allow” “conjugal visits” with him (yes, jail terminology was really used back then for free adults) she fled to be with him on the streets. He was accused (against her strenuous objections) of “raping” her because her parents did not like that he was not of the same religious sect as the one in which she was raised, and also they knew for a fact that she was “childlike” and could not be a part of such "sins." Had he not been able to prove that he, too, was developmentally disabled, he would have been taken into prison instead of the “system” of state-supported group homes.

Apparently, if that guy had not been disabled, there would be no other explanation for him loving and being attracted to his girlfriend who loved him too, other than his being a creepy sex offender. She could not possibly have consented on her own, because her parents had filed for guardianship.

That was more than twenty years ago, but people still assume that developmentally and intellectually disabled people can have lovers only if they are being victimized against their will by evil perpetrators who should be punished for loving them. Unless we are fairly successful and can communicate readily, in which case those who love us must be some kind of saintly martyrs, bless their cotton socks.

Although developmentally disabled, I’m typing this blog post all by myself, which makes my wife a saintly martyr instead of a sex offender, I guess. She’s lucky I became interested in writing!!

So, everyone, it’s been a quarter of a century, and I declare that Mr. Johnson is the one who knows if he loves Anna Stubblefield and consensually wanted to be with her. If he is not attracted to her and she was being creepy to him, let him tell us. His family is not who knows this information and neither do judges and juries. Not allowing him to testify is malarkey. It is still malarkey even if most people consider themselves intellectually superior beings who can decide if it’s “wrong” for others to hook up. Ableism is somewhat understandable because it is so pervasive, but we must not let it govern us. (Racism is also no way to make decisions.)

If Mr. Johnson says that Ms. Stubblefield is a creepy stalker who pushed herself on him, then she fits that trope, but again: he is the one whose opinion matters here. Legally claiming that a person is not fully a person capable of choice is a mess, and so is the notion that certain people are automatically undesirable and so thus whoever desires them must be suspected of evildoing.

It is twenty-five years later than it was a quarter century ago. Let us hope we have evolved.

Some further reading:

http://www.nj.com/essex/index.ssf/2015/09/professor_accused_of_sex_assault_declares_love_for.html

http://dsq-sds.org/article/view/1717 

http://julieswritings.blog.com/2015/09/13/some-of-my-thoughts-on-the-anna-stubblefield-case/

http://autonomous-press.myshopify.com/products/typed-words-loud-voices

https://emilybrookswriter.wordpress.com/2015/09/21/disability-rights-on-trial-whats-really-at-stake-in-the-stubblefield-case/

Thank you for letting me share.

Love,

Ib

Transubstantiation, by Anonymous

I feel self-conscious trying to talk about transition because I don't have the intention of taking certain steps, and because the fact that I don't want a name change makes me feel like I stick out. The fact of the matter is, there are going to be no easy solutions. I am not one thing, I change, and as I try to find the best possible combination of strategies for navigating the world, I can't help but feel a firm conviction that I must get the testosterone out of my system. I don't like the way it adds to my aggressive fight-or-flight tendencies, and when I feel most in tune with my biochemistry as it is now, I am most prone to doing the things I least identify with. As I have sought to dismantle my unhealthy strategies for dealing with the world, I have felt less and less capable of communicating with my body's shape and… texture… as it is currently constituted.

The fact is, I want to be called "they" and "she", but I don't have a particularly strong interior need for it, it's more like not being seen makes me just disengage from the people around me. Like, if you can't see me, then why should I even bother to include you in my messages to and with the world? For a long time, that seemed like a way to be, but it made the world very small. Getting the outside world to acknowledge and to create the space for me that is me-shaped, is about participation. When I am alone, like now, the biochemistry that gives me such trouble is nothing. In the kayak, on the water, the body I have is my body. I make it sing, and the things I do with it produce such wonderful sensations. In those places, I am not disabled because the way I process the world is not limited by the ways I need to be able to interact when my attention is demanded by others.

Kassiane wrote something about where she is and is not disabled that really resonated with me when I was first coming to terms with myself. In those days, I tried to find blogs by female autistics because I was very aware of the fact that I didn't think like male autistics and I had already made the choice to abandon my first run toward transition. When I read that piece, it made me think less about my communication issues, as profound as they were in many situations. Instead, it made me think about why I played women in games and always gravitated toward female-led spaces online. It made me think about the places where I felt like it made sense for me to be, and why my natural instincts led me there. At the time, I was also starting to read a lot of trans feminist work, because I felt like my ability to give up made me, definitively, not one of them. Still, because I had tried, I wanted to learn to be a better ally.

I have hurt myself in so many ways with a callous disregard for my own body's attempts to tell me what to be. I don't have a lot of ways of expressing how the burden of memory or the process of my background created a rubric of the self that was so resigned to the idea that life had to be constantly awful. All I can really say is that I had a unique set of circumstances that came together to make me terrified of expressing my terror, lest its sources be interrogated. I don't know when the first time I heard an anti-trans slur at a family gathering. The word he-she was something the adults had bandied around in conversation in front of me by the time I was five. I distinctly remember, about the time I noticed leg hair, my father talking about his failure to understand "those things" that were willing to settle for never being right as either. About how he "had one" at his work.

I waited every day for my voice to change, and I tried to tell myself the terror and the crying was just because I was nervous, because (as my parents said repeatedly), hormonal changes made people emotionally unreliable and my teenage years would be painful and make me do and say stupid things. Looking back, their entire approach to adolescence seems like it was designed to make sure that people like me turn in on ourselves, and I did.

The ironic part about reviewing my past as I come out about my transition is that there were so many ways that I was a cliché of female teenage emotional disturbance in the nineties. My early adoption of BDSM lifestyle fashions was only months ahead of my first flirtation with surrendering autonomy and consent to a partner. I cut, uncontrollably, and actively sought out romantic partners who would not judge me and at least one who openly helped me to eroticize the sensations. I got into a series of lopsided friendships with people who understood my problems and took advantage of them to maintain control over our social relationship. Some of them were people I felt deeply for, romantically. Some of those were unrequited. Eventually, I developed an eating disorder. Then I cut off all my hair, attempted to talk myself into transition, came out of the closet instead, right before cycling back to bisexual, and had the kind of friends who viewed me as deceptive for this. Luckily, as I lost them, I forged what would turn into my relationship with my partner.

In the early years, I took a lot of damage in the name of making safe space for her. I knew I could, so I did, and I was willing to do it because I could tell that the way she hurt me was not like the way other people hurt me. It was because of things she could not stop, but that she worked against. They were because she had the same flavors of trauma in her past, even if she had different experiences. So when I took that pain, the transubstantiation into eroticism was easier to do, and I learned with it, and it grew. There were times we were driven apart again, and in those, I was still too hurt from my early relationships to begin to approach gender again. When I was fifteen, I had spent time in skirts and had approached makeup with my family, but the restrictions put on what I could use and where I could go, how I could express myself and what it would mean, they made me surrender to their restrictions by freezing. After ignoring them and thinking I could get away with it, my father shut me down so hard that I could not make myself up again without crying. And it didn't help that the girl who had enabled things and got me dieted down until we could share skirts decided conventional khakiness and Abercrombie and Fitch were her thing instead, and she didn't really want a skirt wearing weekend-tripping fishnet clad boyfriend who had more cosmetic practice than she did. And when she demanded, I did, because she was still an alternative to the people who had shut me down to begin with.

Sometimes, I think the only reason I'm still alive is because of the suicide of a family friends. There have been a lot of times I've been with death, with visions of ways that I might end with just a flip of the wrist again, and then an embankment. Those visions are almost never near now unless I conjure them like I did when writing this, but there was a time that they were riding beside me through everything. And to be honest? Those times were pretty much every moment from when I let myself give up on getting into my first girlfriend's leather skirt again until the first time I decided to demand movement toward transition. This might seem sudden, but it's something that I spent every day trying to not keep track of the number of days since I'd considered it.

I didn't always identify with girl things, and I still don't in a lot of ways and times. It's more like there was a tightness in my chest whenever people tried to divide us into those two groups, and the one I got pushed into always seemed like the not-so-best of the two. Today, I know what that means, and it makes me reluctant to use words like woman, even if I am looking for a chance to change my whole system to estrogen. And that gives me trouble when I try to approach services, too, because I know what a lot of doctors think of people like me, because after all, there are some doctors who said some of the awful shit right here in my family. And so, even though I can't really tell how many of the people around me are going to be like they've been, my brain can't give up on the idea that my doctors are going to be people like them. And so, away I go again.

This is my rumination, and it burrows so deeply into my brain that even when I don't feel close to suicide and I know why I left her sleeping alone in that bed, it still stalls me out and makes me spend days feeling like I am my tasks, not really alive so that I don't have to contrast it with being dead. And then, too, I lose time. I grieved the beginning of my change at twelve, and I tried to embrace the bass in my voice even though I couldn't be in love with it. And then I tried shaving everything at fifteen and taking advantage of constant walking to stay lean and get into my favorite clothing, only to be shut out of it. I redid a wardrobe to attract men and fell into a swirl of club douche and drag queen in my early twenties, and I felt constantly jealous of my friends who did dress up, but I lacked confidence and made about ten thousand dollars a year, so makeup was not in my economic picture.

By the time I was twenty-five, it was just enough to work on that grad appointment, to learn a profession, to get into a situation where I could protect us. In the in-between, I got a vasectomy and started crying when I found out it couldn't really lower my testosterone, because if it did that would have given me a way to talk about just giving up on male hormones and going with an alternative in pill form, but with that out of the picture and our money situation so tight I had to get a grant to get my three hundred and fifty dollar surgery done, I gave up. And then, I graduated in 2008 and fell out of the job market and into steep debt and no savings, and I gave up again.

Somewhere along the way, I let myself give up. I let myself think that being autistic and prone to gender perceptions that were different (shown by a preponderance of the studies on the subject), I let myself pull away from it, to embrace the idea of just being a different kind of masculinity… and then my body rebelled against me. I have broken so many pieces and lost so much mobility. I am over a hundred pounds heavier than at the point where I was ready to transition before (although honestly, I'd developed an eating disorder again by then), and only recently have I managed to get full feeling back in all my limbs. I have spider veins now, and at least one or two scars caused by wearing clothing so tight it cut off some of my circulation. I had periods where I couldn't afford to change that.

I know my family would probably say that if I'd talked about this to them, then they would have helped. At least with basic things like learning to credit or needing extra help navigating things. I've seen their help, though, and I would have been lost in it, with my life a collage of their decisions and the same eroticism with death at night, alone, when other thoughts have gone to sleep and she is the only one awake and horny. I have survived by maintaining autonomy, and by seeing that the temptation that snuck into my room when I had to sleep around my family was destructive to me. I have moved past that.

So, I don't feel particularly like I have a strong attachment to my gender. But I know what hasn't worked for me, and I know what my body wants, and I simply have to ask: if gender is something that is going to be done to me, why not at least let myself move in the direction that my natural inclinations lead other people to classify me in? And that's really the secret of it. The horror I face daily is not feeling like my body doesn't fit me, it's feeling like the reactions to that body, and the communications offered to it at every level of interacting out in society, are disproportionately out of line with what people should be seeing.

I fear being evaluated by conventional psychologists because I have always built my identity outside-in, and there are a lot of people that seem to view that as unhealthy, but I can't be any other way. My self is built by doing what is comfortable for me, and then labeling it according to the concepts provided by the society I'm in. Transition doesn't mean changing me, it means finding out how to do the last few things that will lead the labeling others do when they look at me to be more accurate.

I'd like to call bullshit on myself at this, but there are some things that can only be approached, and some aspects of having multiple gender presentations to be negotiated in different circumstances that beg you to look at the literal words used in the sentence and draw inferences, because there are some topics that are still too far outside my ability to find words for that will be accepted as competent.

I feel uneasy, but the story is telling.

Telling Our Stories: Why I Launched the Disability Visibility Project, by Alice Wong

This year, we commemorate the 25th anniversary of the Americans with Disabilities Act (ADA) and recognize the achievements and progress of people with disabilities. While I appreciate the labor and sacrifices of generations of people in the disability rights movement, I can’t help but have a slightly jaded view of the ADA festivities in light of the current status of people with disabilities.

Despite the passage of the law, disparities in healthcare, education, and economic security continue to undermine the ability of people with disabilities to live in the community and to fully participate in every aspect of society.

I wonder how it is that in 2015, the labor force participation rate for people with disabilities (31%) is less than half that of non-disabled people (81%); that people with disabilities who use Medicaid-funded personal assistance services are unable to move from state to state without risking a reduction in their services; that people with disabilities who receive Supplemental Security Insurance (SSI) cannot save for the future because they are hindered by outdated asset limitations, which needlessly trap people in poverty; and that people with disabilities can face marriage penalties due to Medicaid and SSI policies regarding income and assets.

If the mission of the ADA is to prevail, these counterproductive policies must be reformed. 

Because how else can some segments of the disability population fully participate in society?

Challenging these insidious public policies requires listening to the stories and experiences of people with disabilities—and dismantling the idea that living with a disability is either something to be pitied or an inspirational act.

To that end, I often share my own story as a disabled Asian American woman and a person who uses consumer-directed Medicaid personal assistance services, arguing that these services are a basic human right. It was with that goal in mind that I also launched the Disability Visibility Project (DVP), a community partnership with StoryCorps. The project encourages people with disabilities to record their oral histories and to foster conversation on the lived experience of disability.

The following are just a few of the many stories we have collected through the project:

Ingrid Tischer on disability and work

… if you don’t have a disability, you know, basically you are encouraged to always present yourself in terms of what you can do. That’s your identity, hopefully, if you have a healthy sense of self. The things that you can’t do are simply the things you haven’t learned how to do yet, or that you didn’t really care about in the first place. It feels like the message that a person with a disability gets is your identity is based on what you’re unable to do.

(For extended audio clip with text click here.)

Mia Mingus on disabled women of color and able-bodied conceptions of work

So what does it mean then to be a disabled woman of color and to really be like, putting forth questions around work? And what does work mean? What does it mean to be a woman of color who can’t work? Or who is not able to work as much, right? And like, in some ways I feel like it’s totally oppression that like makes us work harder…I think about that a lot around like, yeah, disability and aging.

(For extended audio clip with text click here.)

Yomi Wong on economic justice and people with disabilities

…I think the next frontier, and I know that there are people working on this and talking about it, so it’s not like some nuanced idea is really economic justice for people with disabilities. I mean, we are among the poorest of the poor in this country, the most unemployed or underemployed demographic and you know, I think economic justice is really the next fight, and it, it’s the fight now, right? And it’s the fight in the future.

(For extended audio clip with text click here.)

Economic security is indeed the big elephant in the room when it comes to disability policy. Everyone knows it’s there, it stinks, and few have the political will to do anything about it. All the while, people with disabilities are being left behind. Storytelling is one way to change this dynamic.  By gathering individual narratives into a larger collective voice, we can provide a sense of urgency, and push for a transformative shift in the relationship between the state and people with disabilities.

All researchers, policymakers, and activists have a role to play in creating social change and expanding opportunity for people with disabilities. But the lived experiences of people with disabilities must be at the center of that process. I encourage people with disabilities to record and share the stories of their lives, and for people who work on disability policy to learn from our stories as we work to further inclusion and justice over the next 25 years.

Alice Wong is a Staff Research Associate at the Community Living Policy Center at the University of California, San Francisco. Currently, she is the Founder and Project Coordinator for the Disability Visibility Project. Alice is also an Advisory Board member of Asian Pacific Islanders with Disabilities of California (APIDC) and a Presidential appointee to the National Council on Disability.  

For more information about the Disability Visibility Project:

Website: http://disabilityvisibilityproject.com

Facebook: https://www.facebook.com/groups/356870067786565/

Twitter: https://twitter.com/DisVisibility

photographs by Barbara Ruth

Calla Lily dreams: Manipulated Photograph: Picture of a calla lily with the colors changed. The majority of the picture is the leaves, which are primarily midnight blue with some red. There are two flowers, in ivory. One is open, and one is closed. The open one is just a suggestion of flower; no detail. In the upper left of the picture is a cream wall with some flat blue beneath it. All of the colors bleed into each other a bit and there are hints of red in the deep blue of the leaves and on the wall, and touches of the lighter blue in the ivory opened flower. The leaves which are articulated against the wall sway to the left.

Calla lily and wooden fence: Manipulated photograph, rectangular, twice as tall as long. The background is a wooden fence, with burls in the wood and light seeping through between the boards. The burls are phosphorescent green. The tops and bottoms of the boards are lighter in color than the deep brown of the middle section. In the foreground half a dozen calla lily leaves are vibrant violet with lighter blue-green tips. Two leaves have more blue and green than violet. The one calla lily flower is mostly closed, in side view, near the center of the plant, and is cream-colored, with some white.

Daffodils: Manipulated photograph: Three soft black daffodils with deep blue centers are in the middle of the picture surrounded by lilac leaves and blades of grass. The lilac cross in front of one flower, behind the other two. All of the edges and especially the lower right, are lighter, the lilac fading into cream, the general background color.

Road Trip: Manipulated photograph - Image is twice as tall as it is wide. Most prominent in the picture, slightly to the right and below the center,  is an antique car,perhaps from the thirties, four door, black or dark blue, in cherry condition. It is the only car clearly  visible on the 4 lane road.  It appears to float on the surface as it goes around the surface of the road, which repeats faintly at least twice above and below the main road. A line of trees follow around the curve of the road, on the outside, on the right. The right top of the picture is a white opening, indicating sky, and large grey-green hills which extend beyond the frame of the picture. In the top left the entire image has been rendered kaleidoscopic, doubled and shrunk.The effect is two circles, one on top of the other, perhaps resembling eyes. The place where they meet is the starting point of the strip of white which stretches above the hills.

Totem of Cactus and Stone: Manipulated photograph - Picture is twice as tall as it is wide. An image of a cactus with stones and leaves on the ground near it. The image has been mirrored, so all aspects are symmetrical. The cactus (cacti) is a little above the center and bright green, the most vibrant color in the image. The rocks and leaves above and below suggest masks, idols, totems; their colors are various shades of green, from dark moss green to pale lime green, and also beige and tan.

When Chamomile Gets Witchy: Manipulated photograph. The camera looks down on a chamomile plant, which is greatly enlarged. The ground is rendered steely blue, sparse curling lines of midnight blue are the grasses and weeds. Eighteen buds of chamomile raise their cerulean heads, above their lavender bodies. In the lower right some stems have no buds. In the upper right the surface (the ground appears thicker; these are twigs, some of which lie under the chamomile buds. A faint circle can be seen slightly off-center, this area is slightly lighter than most of the rest of the picture. 

Artist Bio: Barbara Ruth is an old lesbian who learns all the time from the Neuroqueer community.  She has epilepsy.

My Bipolar Pain(t) by David A. Feingold, Ed.D.

(Artist's Statement: I feel I am fortunate to have bipolar disorder.  It contributes to my uniqueness and not only forces me to live with imperfections, it redefines them as necessities.  I am bipolar and proud to the extent that I refer to myself as a bipolar artist as opposed to a more conventionally acceptable form: "an artist with bipolar disorder."  Yes, at times, it pains me to have bipolar disorder, but shirking from its overriding place, influence and effects in my life, pains me even more.  As the title of my image suggests, we can't paint over our pain with euphemisms and minimizing its close ties to our personalities, as it only muddles our self-perception and creates confusion and doubt concerning who we really are.)

Visit the artist's Web site: http://www.feinart.me/

"What is NeuroQueer?" by Michael S. Monje Jr.

What is NeuroQueer and what does it mean to me?

Well, let's see. Maybe you should take a seat,

this could be a long one in the telling,

and I'm not sure that you necessarily want the whole thing.

Plus, I'm feeling like this is a lot of responsibility,

because I'm one of the original three to speak the term into being,

but I'm not wanting a situation like at science fiction conventions

where conventionally timid disciples cling on to continuity questions.

This is my origin, yes, but that still means it's a construct,

so your perception of it is its meaning once it leaves me,

and I have to hope you're good people who remember my intentions,

but I'm also aware that my ideas will become garbage

if I can't learn to loosen my rhetorical grip.

So if you remember one lesson, let it be this:

I'm a working demonstration of constructing a durable cultural rhetoric,

and I didn't originate a single one of my own damn tactics,

all I did was assemble parallel arguments, making a collage of activist rhetoric

that pulled its credibility from the humanity of its ethic.

I'm an autistic atheist trans humanist,

trying my best to create a storm around an empty eye, a center

where we can center anyone who has a need for the calm,

create a safe space to hold them while they grow,

and then let them loose with their own rhetoric to storm some more.

Then we center another young artist through their traumatic experience,

because that's what crafting at this level will always be,

birth is painful, you try speaking yourself into being.

That's why I will always owe this debt to the cultural orators before me

from Nas to James Baldwin, Amy Tan to Tennessee Williams.

In my summer rhetoric before I let my web serial begin,

I hinted that there was an explanation of the fugue

and a canon to give to you, and this is it,

so let this be the beginning,

and know that this is a document that you should always be adding on to,

and it started long before you,

and it started long before me too.

But what is NeuroQueer to me?

Well, it was almost the title of the Clay Dillon series,

if that gives you an idea of his place in this and my thoughts (in the beginning).

It was an expression of the fact that my gender was in question,

and I was unsure of the implications for this and

for the rediscovery of my tactile fetishes

on my perception of my own sexual orientation.

When your gender is in flux and you're attracted to both sexes,

there is actually the question of whether you're in different states

and still feeling like a heterosexual, or if it's more than that

and you spend much more time than you might like thinking on it,

and it becomes just another thing that interferes with the progress of your being.

So I decided to let those insecurities breathe in the brain of a character,

and I actually started with him older and only wrote Nothing is Right

when I had to find a backstory,

because I was drowning in my own immersive memories,

and putting his life in order allowed me to order my being

and center the voice that sounded like a version of me that I wouldn't hate to be,

and if that meant it, then transitioning.

So in short, at first neuroqueer was my perception of my gender,

a new type of neurodivergence, interacting with both my behavior

and my autistic characteristics, and it was what that meant

for my communication style and choice of partners

during sexual interactions.

It was always all three, which is why when I wrote Defiant

I used chapters that illustrated all the intersections,

and then how they were alone,

and then when other segments came unexpectedly into play,

like how Clay gets confused by sadistic cues in his therapist

and becomes compliant because his sexual preferences have conditioned him to it

and how he has to build a professional power exchange relationship

with his wife as his partner in control of it

before he can structure a career path that makes sense to him.

And Nothing is Right is all of those characteristics as expressed in a little kid,

and if you read clearly you can see my sources all cited:

Like it was Eli Clare who said his gender was screaming,

so I took that same feeling, as I understood it being when it was me,

and I stuffed it into the brain of this fictional seven year old

and showed you the pain exactly as I had felt it unfold.

In reality, those aren't memories,

but that's because I'm acknowledging the reality

of the Persistence of Memory being malleable actually,

and so I'm broad brushstroking and hoping you catch on to what expressionism is,

and then I'm moving it into the viewpoint of the little kid

and trying to say his cognition is

a perfect demonstration of what it's like to live in that environment

when you're more of an impressionistic thinker,

and none of the portraits in your perception are recognizable.

But never forget, the text is the product

of my omniscient third person.

Clay Dillon reads a lot, but he actually says little,

so if you're about to make the objection that the vocabulary

was out of wack to the perceptions of little kids,

I'm just going to accuse you of not understanding a bit

about what autism is.

The words are descriptions of things he understands through feeling,

visualizing, reading silently, dancing through, or dreaming.

He makes connections in his head, but the assumption that they're verbal

or that his cognition is the thing you're reading is really demeaning

and makes me wonder if you can be a competent critic. But if you get it?

Then we're in business, and you need to know this:

I'm only writing one dissertation. It's represented in several media

and put in chronological progression,

but the poetry and theory are the same work,

and the fiction and drama are rhetoric in the showing mode,

case studies in accessible language for how these theories unfold.

That means: You guessed it. I have already penned three treatises:

Nothing is Right and Mirror Project are already available and widely marketed

along with some minor discourse on coming out to myself,

and that's without citing all the blog posts that I did

or the half dozen articles I sydicated to other outlets.

I put in the work and had copyrights and ISBNs

before advertising the theories I had tucked within

to make sure I put you in the position of having to cite fiction,

because the drama is the criticism

and I did everything on my end to put in the work

to make sure rhetoriticians in disability studies had to teach literary interp.

This is what Neuroqueer is to me

a way to speak my way of thinking about literature into being

because my identity is my cultural vocabulary,

and my new narrative happens on levels that illustrate moral stories

decorated with a bibliography in all the arts of rhetorics that influenced me;

I'm constructing sampled mashups like internet directories,

hypertext rhetoric, not a line stolen but rather an easter egg citation,

begging the student to understand how to write like this

by throwing on some Nas and reading like they might get it.

If I've been dead awhile and you find me, then locating my references

will let you know what I did because it will locate my influences

and that will let you infer my most direct descendents;

I'm a creative scholar who's studied hip hop philosophy,

paleoanthropological and historical methodologies,

and sought to expand the diversity of their stories

so that when I construct meaning, it's with an awareness of my own identity

that locates me within a vast network of free beings,

all thinking, contributing to our group understanding with our interactions,

coming to understand our moral obligations through negotiation

and not pontification based on assumptions of others' experience.

See what I did?

I'm betting right now there are people who want me to get to speaking about who I read,

but I'm more interested in discussing what Mirror Project did.

That was my out of body exploration piece,

but in a way it was closest to being my autobiography.

I don't think I need to explain the abuse dynamics in the writing,

but know that my perception of gender was growing as I explored Lynn's body,

and so in a way it was my fingers talking back to me,

giving a scenario to the verbal thinker in my face,

having a dialog between my body and my brain,

and negotiating what each of them will need

if we're going to make the jump and I'm going to get free.

So that one took the longest but you need to include it in your read

because without it you can't understand the rest of my theory.

And my entire career it will be like this, from discourse poems on my blog to publications

to novels, conferences, and paid speaking engagements.

I've been thinking for over six years in scholarly silence and I'm only giving this talk once,

and it's the only thing I'm doing, so it will, naturally, be evolving.

I'll be going from criticizing Steinbeck and locating Lenny as someone lovable

despite the condescension with which he's written and his inhumane treatment,

to bringing flowers for Algernon and cricizing Charlie's regression symptoms;

I'll be on Alice Walker too, and reading The Color Purple to compare to Sapphire's Push

for a generational point of view. I'll bring Borges alongside Nas and Boy George,

doing gender studies on Sam Shepard's drama and making new theories

about disability as presented in cinematic Dada,

but then I'll be situating these observations in character perceptions

or embedding quotes in rhymes on spoken word albums,

making hidden attacks in the lyrics on purpose in places

to comment on appropriation, and trusting my audience, presuming competence,

and creating texts that embed moral rhetoric as literary allusion

or through juxtaposition of different figures, creating a tapestry

with more representation in it than I got to see as a kid,

trying to bring visions of interacting histories in the background of developmental narratives

that don't exist to reinforce normative structures, but to deconstruct heterosexist cis whiteness,

showing how it is that teenaged, working-class, undereducated teen parents could miss

the queer autistic experience of one of their kids.

They are the parents who would view a child's quietness as a blessing

after a day of unrelenting expectations

and whose reliance on their working class, white social networks

reinforced bad values that led to them paying more than their dues,

guilting them out of asking for help when it was the right thing to do,

using peer pressure and racism, homophobic hatred, gender policing,

and a healthy dose of talk radio with inappropriately imbalanced news

to keep them in suspension until their will to think vanishes

and they wind up with only short-term thinking strategies,

which makes them impulsive and selfish,

which is what they teach to their kids,

and those kids grow up not knowing what a coping mechanism is

or having a real sense of who they should be, beyond the tough guy exterior

and the refusal to treat other people decently.

The fact that this identity exists is my criticism of the entire culture that could produce him,

and since he's a painting of my emotions during my upbringing,

his existence on the page should be doubly troubling,

and should inspire us to move together in unison,

dismantling the cognitive dissonance, placing expectations of conformity

outside of our shared experience.

This is why we need to make sure people know my ideas came from

The Invisible Man, and not the slim one that H.G. Wells did,

but the one I read over years and in excerpts, always too busy to give it sustained attention.

Still, I'm glad I got what I did of it.

I'm also looking into The Joy Luck Club, the criticism of Wayne C. Booth,

and some of the early essays of Jim Sinclair too.

When it comes to my understanding of feminist theory, though,

I get worried. Not that I think I lack understanding,

but because some ideas have been trickled up into inappropriate appropriations,

and others have become so common that I can't even tell their beginnings,

so what the hell am I supposed to do? If I'm looking into media theories,

do I talk to the blogger or talk about books?

Do I cite Kerima Cevik or do I cite bell hooks?

It matters how we do this, and who we trust in it and with it,

because we don't want to leave anyone out of the conversation

but we need to make sure we don't get appropriated.

This is why I won't even respond to a rhetor who doesn't read my work in all of its places,

because you can't know enough about it to grasp the basics,

and you're sure to miss the extended arguments

in hypertextual rhetorics of arranged and selected setting mosaics,

Luddite links like Finneganswakeanism filtered through the ears

of a kid who couldn't stop listening to Rakim,

links you can't click, but you might perceive if you have the training.

They are programming connections in imaginations,

creating alternative intranets in the webs of our thought complexes,

restructuring the architecture of solitude to reflect the world around you,

a seamless interior blended with a digital environment.

Fingers talking, unspoken communication, are the tumblrs falling into place yet?

Even if you can't respond in all of my modes,

you'd better taking responsibility for knowing that's how my argument will go.

You gotta start with Nothing is Right as the first one that I did,

then go to Defiant and compare him to what he was as a kid.

Read Mirror Project next, and then jump contexts,

because I immediately went into the poetic mode when I emerged from my post-traumatic hole.

Start with environments like Pollocks, and read every painting,

every discourse and dedication,

the Thoughts on Writing, Barking Sycamores publications, and A Waking Narrative.

Then return to Clay Dillon as a kid,

and while you're busy reading Imaginary Friends

I'll pen a piece on gender and speech for a text communication collection, then write this.

And all of this is what I think NeuroQueer Theory is.

And it will be ongoing for as long as Clay Dillon is.

Every story is discourse, and it discusses the progression of an identity

as a combined narrative about multi-modal media literacy,

with books and magazines, TV and music, the birth of the internet,

pamphlets, library book sales, and dumpster dived paperbacks

all influenced by a setting and a lack of direction,

a lack of social context for his texts

and a solipsistic interpretation.

And somehow, there still will emerge a beautiful human

after they stop sorting through all of the hatred and find a way to let go.

You'd better believe that when Clay Dillon misunderstands things,

it's appropriate, to illustrate the level of his textual comprehension

in context, and next to his actual navigation of the construction of a sentence's grammar.

I'm not being lazy or taking pot shots,

I'm showing a point of view with all of its pitfalls and intellectual inconsistencies,

showing maturity multidimensionally to illustrate early reading in a realistic setting.

How long will that take? Who knows?

I'm not done speaking,

but it's time I concede

that the only way this will have any meaning

is spaced out between similar musings from a variety of other beings.

Corbett OToole's Fading Scars: My Queer Disability History is #mustread

[Editorial note: This is the preface I was moved to write about the world-changing excellence that is Corbett OToole's new book, Fading Scars: My Queer Disability History. It is an indescribable honor to have had a small part in bringing this much-needed book to you. Love, Ib]

ONE ELDER IS A WHOLE LIBRARY

When I was in grade school in Portland, Oregon, I was lucky enough to be included in outreach activities by a coalition of local Native American tribes who made a practice of inviting children on field trips to traditional Potlatch events, to share between cultures. Like many cities in the US, Portland was constructed on ground—some of it holy —taken from a variety of tribes. While many people went to reservations in the middle of the eighteen hundreds, a relatively large number remained in the growing urban center, and helped give it the character for which it is still now known.

A Chinook woman told me I was bound to like fry bread, despite my idea that very few things were actually edible, and unlike myself, I rightly believed her. Then, having discerned my love of reading, she told me a much more important thing.

“Respect your elders,” she said, “And hear what they have to say. One elder is a whole library.”

This has stayed with me always, and it is why I became interested in epistemology, which has to do with how people know things, and what it means for them to know them, and what kinds of knowing there can be.

People can know by thinking, and also by doing, for example. The knowledge held by an elder is doubly powerful: elders have done the things, and also thought about them. More is written about this elsewhere, but what must be said here is that Corbett OToole was there in key moments of disability culture even before people had written that there is such a thing as disability culture and named it. She is also friends with other people who write about disability culture and history, and so knows in a lot of detail what she thinks about the things she has done and seen in many different ways.

This book spans decades, major events and topics, and comes from a point of view called “autoethnographic,” which is another word for writing about one’s own life in order to show larger culture to the reader. It is a memoir with educational purpose. It is from the horse’s mouth, as they say: a play-by-play written by someone inside the action, telling us what happened then and there.

Fading Scars is absolutely essential reading in courses of disability studies and provides an excellent voice to complement histories written by historians, who have access to other kinds of knowledge about our collective past. Karen Nakamura is right to say that this is not only to be read by students of disability culture and history, but also by everyone. As Kim Nielsen says in A Disability History of the United States, disability history is the story of our nation. And the future of disability history (and queer history) is the kind of intersectionality and coalition we learn about in these exciting pages. 

Neuroqueer: An Introduction, by Nick Walker

This piece was originally published on the author’s blog, Neurocosmopolitanism.

The term neuroqueer was coined independently and more or less simultaneously by Elizabeth J. (Ibby) Grace, Michael Scott Monje Jr., and myself. Having coined it, all three of us managed to spend a few years not getting around to using it in any published work, even though the set of concepts and practices represented by the term came to heavily inform our thinking. I almost used Neuroqueer as the title for my blog, but decided to go with the title Neurocosmopolitanism instead. Michael almost used Neuroqueer as the title for a novel, but decided to go with the title Defiant instead.

It wasn’t until Michael mentioned this last fact, in an online conversation in which he and Ibby and I were all involved, that we discovered that all three of us had been playing around with the same term. Happily, though we were all approaching it from different angles, our various interpretations of neuroqueer (or neuroqueerness, or neuroqueering) were in no way incompatible. In the same conversation, we learned that another friend and colleague of ours, Melanie Yergeau, while she hadn’t yet stumbled upon the word neuroqueer, had been thinking along quite similar and compatible lines in playing with the concept of neurological queerness; Melanie’s contributions have been extensive enough that even if she didn’t come up with the actual word, I consider her - along with Ibby, Michael, and myself - to be one of originators of the concept of neuroqueer (or neuroqueerness, or neuroqueering).

All four of us - Ibby, Michael, Melanie, and I - emerged from that conversation freshly inspired to begin introducing the term, and the set of concepts and practices it describes, into our public work and into our communities and the broader culture. Since then, we've been following through on that intention in various exciting ways. Ibby, Michael, and I, along with Bridget Allen and Corbett O’Toole, founded the independent publishing house Autonomous Press, to publish books in which neuroqueerness of one sort or another tends to play a prominent role (starting in 2016, Autonomous Press will also have an imprint called NeuroQueer Books). Ibby founded the NeuroQueer blog, with Michael and Dani Alexis Ryskamp and I later joining as co-editors. Melanie is working on a book that I can’t tell you about yet, but it’s going to be extraordinary and most definitely relevant. We’ve all started talking about neuroqueerness and neuroqueering in our academic conference presentations and public speaking engagements. Ibby and I are now co-editing the NeuroQueer Handbook, which will be published by Autonomous Press in 2016.

Meanwhile, the term is catching on in various circles and communities, taking on a life of its own, as terms and concepts tend to do when the time is right for them. It’s showing up in academic papers and conference presentations, creative projects, Facebook communities, blogs and Tumblr accounts and all manner of social media platforms. It’s been adopted by a whole lot of people I don’t know - and when a new term/concept spreads beyond the social circles of its originators, that’s generally a sign that it’s “got legs,” as they say. In other words, it’s a term that you’re likely to be hearing a lot more of in the years to come.

(The day before I wrote this piece, I was at California Institute of Integral Studies for the first meeting of a course I teach called Critical Perspectives on Autism and Neurodiversity. I was introducing my students to basic neurodiversity-related terminology like neurotypical and neurodivergent, when a young undergraduate excitedly asked me, “Have you heard of the term neuroqueer?”)

I’ve already seen a lot of interpretations of neuroqueer and attempts at definition from folks who’ve adopted the term. Some of those interpretations miss the point, sometimes in ways that are truly facepalm-worthy. Other interpretations are more on-point but overly narrow, such that Ibby, Michael, Melanie, and I look at them and say, “Yeah, that’s part of what we were getting at... but only part of it…”

So what were we getting at? What is neuroqueer (or neuroqueerness, or neuroqueering)?

I should first of all acknowledge that any effort to establish an “authoritative” definition of neuroqueer is in some sense inherently doomed and ridiculous, simply because the sort of people who identify as neuroqueer and engage in neuroqueering tend to be the sort of people who delight in subverting definitions, concepts, and anything “authoritative.”

That said, the definition that follows is as close to an “authoritative” definition of neuroqueer (and neuroqueerness, and neuroqueering) as is ever likely to exist. I wrote it with the input and approval of the other three originators of the concept. So it’s the one definition out there that all four of the originators of neuroqueer have agreed is not only accurate, but also inclusive of all of the various practices and ways-of-being that any of the four of us ever intended neuroqueer to encompass.

Neuroqueer is both a verb and an adjective. As a verb, it refers to a broad range of interrelated practices. As an adjective it describes things that are associated with those practices or that result from those practices: neuroqueer theory, neuroqueer perspectives, neuroqueer narratives, neuroqueer literature, neuroqueer art, neuroqueer culture, neuroqueer community. And as an adjective, neuroqueer can also serve as a label of social identity, just like such labels as queer, gay, lesbian, straight, black, white, hapa, Deaf, or Autistic (to name just a small sampling).

A neuroqueer individual is an individual whose identity has in some way been shaped by their engagement in practices of neuroqueering. Or, to put it more concisely (but perhaps more confusingly): you’re neuroqueer if you neuroqueer.

So what does it mean to neuroqueer, as a verb? What are the various practices that fall within the definition of neuroqueering?

1. Being neurodivergent and approaching one’s neurodivergence as a form of queerness (e.g., by understanding and approaching neurodivergence in ways that are inspired by, or similar to, the ways in which queerness is understood and approached in Queer Theory, Gender Studies, and/or queer activism).
   
   
2. Being both neurodivergent and queer, with some degree of conscious awareness and/or active exploration around how these two aspects of one’s identity intersect and interact.
   
   
3. Being neurodivergent and actively choosing to embody and express one’s neurodivergence (or refusing to suppress one’s embodiment and expression of neurodivergence) in ways that “queer” one’s performance of gender, sexuality, ethnicity, occupation, and/or other aspects of one’s identity.
   
   
4. Engaging in the “queering” of one’s own neurocognitive processes (and one’s outward embodiment and expression of those processes) by intentionally altering them in ways that create significant and lasting increase in one’s divergence from dominant neurological, cognitive, and behavioral norms.
   
   
5. Engaging in practices intended to “undo” one’s cultural conditioning toward conformity and compliance with dominant norms, with the aim of reclaiming one’s capacity to give more full expression to one’s neurodivergence and/or one’s uniquely weird personal potentials and inclinations.
   
   
6. Identifying as neuroqueer due to one’s engagement in any of the above practices.
   
   
7. Being neurodivergent and producing literature and/or other cultural artifacts that foreground neurodivergent experiences and perspectives.
   
   
8. Being neurodivergent and producing critical responses to literature and/or other cultural artifacts, focusing on intentional or unintentional characterizations of neurodivergence and how those characterizations illuminate and/or are illuminated by the lived experiences of actual neurodivergent people.
   
   
9. Working to transform social and cultural environments in order to create spaces and communities – and ultimately a society – in which engagement in any or all of the above practices is permitted, accepted, supported, and encouraged.

So there you have it, from the people who brought you the term. This definition is, again, not an authoritative “last word” on the subject, because that would be a silly thing to attempt. Rather, I hope this will be taken as a “first word” - a broad “working definition” from which further theory, practice, and play will proceed.

Happy neuroqueering!