Countdown to Spoon Knife: from "Something Plus One"

Today's excerpt from The Spoon Knife Anthology comes from "Something Plus One," by Bridget Allen.

Autonomous Press is now taking pre-orders for The Spoon Knife Anthology, as well as Barking Sycamores, Year One and Imaginary Friends.  Order at www.autpress.com.  (See the latest issue of Barking Sycamores online at barkingsycamores.wordpress.com.)

Day Four

Each day here feels worse. I wonder if I'll ever get out of here. The sense of Other is tangible, like a film that covers every surface with a greasy dust. Of course, there is also real, non-metaphorical, greasy dust. I wish I had some Pine Sol and a scrub brush. I know I'm still in the same hospital, but on this floor everything is different. If I wasn't terrified, I'd be joking about how One Flew Over the Cuckoo's Nest this place is. Not that there's anyone to joke with. No one's visited since I was moved. Not even my mother.

The Turtle Man stops by the ward but doesn't speak with me. I can't tell if that bodes well or not.

Countdown to Spoon Knife: What is a Spoon Knife?

In today's Excerpts from The Spoon Knife Anthology: the Introduction, "What is a Spoon Knife?", by Michael Scott Monje, Jr.

Autonomous Press is now taking pre-orders for The Spoon Knife Anthology, as well as Barking Sycamores, Year One and Imaginary Friends.  Order at www.autpress.com.  (See the latest issue of Barking Sycamores online at barkingsycamores.wordpress.com.)

Introduction: What is a Spoon Knife?

The first question I got from my partners and blogging friends when I started talking about spoon knives was “What is that?” Every one of them had heard about Christine Miserandino’s “The Spoon Theory,” of course, and they could tell I was referencing it, but none of them seemed to be familiar with traditional woodworking tools, because they didn’t see that reference or its connection to activist work. Not at first, at least. Once I posted some pictures of various spoon knives and the bowls they were used to carve, the idea caught fire.

To start understanding the idea of the spoon knife, you need to start back at “The Spoon Theory,” that wonderful, dynamic metaphor for living with chronic pain and disability. If you’ve never read the original essay, it’s worth the time, and it is available online at www.butyoudontlooksick.com. In it, Ms. Miserandino details how she used a collection of spoons to symbolize her pool of resources when a friend asked her what it was like to live with lupus. As she detailed the tasks of a regular day, she took spoons away, to show how her energy had to be spent. At the end, when there was only one spoon left and the only item on the list—dinner—was likely to take two spoons, it helped to drive home the choices and the careful safeguarding of resources she has to make as she plans her daily activities.

The essay is a powerful statement about the importance of long-term planning, of not doing everything, and of prioritizing self-care. At the same time, though, it also begs a question: How does one get more spoons? To extend the idea in her original essay, each day is treated like a table, and each table is set with a different number of place settings. Sometimes, there are more spoons than you need to do everything on the list. Sometimes, though, there are not enough. That complicates planning. What if there was another way, though?

Interdependency, that principle that governs so much of the way that disability and disabled cultures are constructed, seems to suggest that the whole room does better when we are willing to send extra spoons to other tables. That, at least, is the organizing principle in most of the activist organizations and groups I’ve been involved with, whether they are formal or informal in nature. What about when the whole room is packed, though? How do we get more spoons when everyone needs them?

The answer is the spoon knife, that old woodworker’s companion that looks something like the tool it is used to make, only sharp and nasty and quick. A spoon knife is used to carve the bowl, which makes it curved, like a melon baller. It shaves away the unnecessary parts of the wood in layers, too, so it has to be sharp and strong, to keep slicing and slicing until it has peeled enough to make a depression in an otherwise smooth stick. It looks thin, like something made from an old beer can, but in a master’s hands, it rewards patience and precision.

If we’re keeping with our extended metaphor, though, then we still have to ask the question: What is a spoon knife? We know what our symbol does, but what in our community is capable of doing that thing—cutting away layers of what shouldn’t be there, to leave us with the ability to do more, reach further, and nourish ourselves more successfully. What looks thin and weak, but nonetheless digs deep channels into reality?

My belief is that the spoon knife is a story. For some, it’s an expression of solidarity that refills our emotional reserves even as it bolsters the morale of the one who offered support. For others, it might be an example that provides the cognitive scaffolding needed to get out of an abusive situation, or even just to recognize one in the first place. It’s also possible for it to be a confrontation, a reality that will not yield to our need until we learn to wield it and to control its damage with unwavering precision.

It’s fitting that the spoon knife looks both weak and menacing at once, because story is a thing that can be blown away on the wind, or it can slice away the people around you by revealing what lies underneath your initial presentation. And, at the end of the day, a spoon knife is absolutely unthreatening unless one chooses to make it otherwise.

If I’m right, then this collection of knives will provoke new spoons when the right kinds of readers connect with them, providing the things those readers need to navigate their own daily tasks and challenges. And who knows? Maybe a few of them will look into this volume and see more than spoons. Maybe those readers will see the possibilities that arise when you study the uses of the knife. And you know what? We will be waiting for them.

Countdown to Spoon Knife: from "My Mother GLaDOS"

This month, Autonomous Press releases three new titles, including the first volume of The Spoon Knife Anthology.

Pre-orders are now open online, but if you'd like to get a sneak peek at Spoon Knife before you order, stay tuned.  We'll be running excerpts from works in the anthology from now until the release date.

Today's excerpt is from "My Mother GLaDOS," by Dani Alexis Ryskamp.

You, SUBJECT NAME HERE, Must Be the Pride of SUBJECT HOMETOWN HERE

You come from a long line of people who really loved cake.

“Cake,” of course, is a euphemism for sex.  Straight sex.  The kind of sex that is always implied, never stated; the kind of sex one assumes happens in marriages but tastefully omits to mention.  Good-girl sex.  Lie back and think of England, where cake is served alongside afternoon tea.

In 1690, your great-great-great-great-great-great-great grandfather, Harold Kennedy, disowns your great-great-great-great-great-great grandfather, Harold Kennedy, depriving the latter of several thousand acres of southwest Ohio in addition to the usual emotional connections one associates with family.  Three hundred years later, the remaining records only mention that the disowning had to do with Harold Junior’s conversion from Presbyterianism to Methodism.  You’re in graduate school before you learn that “Methodism” is a euphemism for “enjoying too much cake with the wrong people.” 

It might even be a euphemism for “enjoying cake with your own team,” as it were.  You can’t tell.  The familial euphemisms for non-bakery-approved relationships are even more dense and confusing than the euphemisms for vanilla cake.

In 1901 or thereabouts, your great-great-grandmother’s sister, “Aunt Marie,” scandalizes the society pages of the Urbana, Ohio newspaper by declining to have her impending marriage memorialized in them.  Instead, she runs away to Florida for her nuptials.  Ninety years later, your great-grandmother is still heavily implying that Aunt Marie ate her cake and had it too. 

How many Methodist bakeries are there in Florida?  The sketchy end to which Aunt Marie came is repeated, technicians inform you, by your great-aunt, whose decades-long friendship with the first openly gay mayor of Key West may or may not have involved cake.  If the family knows, nobody will discuss it.  “That has nothing to do with us,” your aunt announces staunchly at her funeral.  Of course it doesn’t.  Still, when he is cremated, half his ashes go to his artist partner in Florida; the other half live in your great-aunt’s house, caked in the bottom of a glass tumbler.

“I knew this bisexual thing was just a phase,” your mother says in 2005 or thereabouts.  She’s not referring to the six months you’ve spent attending Methodist college youth meetings – she doesn’t know about those.  No one does.  That has nothing to do with us.  Your mother is talking about your cousin, whose actual bona fide relationships with women were followed by an actual bona fide relationship with a man, whom she married.

Your mother’s voice oozes scorn.  You decide not to mention the Methodist youth group.  Your gaze drops to the cake lying on your plate, half-eaten.

Only after you’ve been safely married off to a straight man do you start to suspect that the cake is a lie.

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.