Tuesday, June 7, 2016

Neuroqueering Composition: Sensual Reflections on the Inconclusive Life of Thoughts, by Sara Maria Acevedo

It is 10am, I arrive to the MacArthur Bart station, I am headed into the city (San Francisco) from the East Bay (Oakland). The walk to and from BART is always accelerated with a million thoughts; they are slippery and merit being written down as to catch them on the flight. I refuse. I am walking. Walking is reflecting. Walking is not writing. It is a hot summer’s day and the air feels stuffy. I find it rather challenging to tune out and process thoughts in crowded trains – chemical scents melt together and make it hard to breath; happy banter turns into loud laughter (everyone likes a hot summer day). Luckily, the world is still a big palpitating mass (I feel it) and there is beauty all around me to weave stories with (I sense it).  Daring beams of light filter through the windows chasing swirly dust particles. Together they birth rainbows.

Ouch! Ouch! Everything is suddenly dark and all I can feel are the odious fluorescent lights rubbing painfully against my corneas. The train is frictioning against the tracks and I am suddenly pulled away from my daze. Pain in my ears and discomfort in my eyes is an indicator that we are under the tunnel and underwater. My heartbeat and breath accelerate and I turn visibly irritated - I plug my ears with both my index fingers and frown. Not far now to get to the Embarcadero Station.
Channel, L’oreal, Carolina Herrera; an assortment of mini Purell containers attached to backpacks and purses - readily there. I cannot take my eyes away from the fruity monsters: exotic papaya fruit, strawberries & cream, madagascar vanilla, passion fruit; body lotions are also of a wide variety: Mango, tropical pineapple, cinnamon & brown sugar, figs & butter.

_____Deep breath _____
                                                                                    
I feel the shape of a wicked smile forming around the corners of my mouth. Relieved, I finally make it up onto the street at Civic Center Station after being insufferably enveloped by at least a 100 different scents for 30 minutes. I notice my heart rate slowing down, as I emerge triumphant through the vomitorium. And yet, playing underground dodge-the-scent and emerging viscerally victorious also entails finding oneself with a severely decreased collection of spoons; big, small, medium. I use them all.

The workday has just begun.





Sara Maria Acevedo is an autistic mestiza born and raised in Colombia. She is an educator, activist scholar and disability justice advocate based in Berkeley, California. She is affiliated to the California Institute of Integral Studies in San Francisco, where she serves as adjunct faculty and disability advocacy fellow with the Office of Diversity and Inclusion. Sara is nearing dissertation in the Anthropology and Social Change program where she focuses on disability justice movements, neurodiversity and the politics of social space.

Monday, March 14, 2016

Puzzle Piece Blues, by Selene dePackh


Case Study [delete]*

Bear in mind that I’m a suspect witness. Everything I say is subject to erasure. I make for deaf ears, pressure-popping like plastique in an airline cabin. I am a Someone Else not-quite-person, speaking in a M/Other Tongue from the far side of acceptable neurology. I’m a droplet in the AutisticTsunami®, rocking myself as I write this to the feedback of the blue glow on my screen. The real people on the other side of the web have credentials, so they are allowed to tell me and everyone else that the feelings I have are not real. My empathetic emotions are a clever construct, fooling me more than the experts. The experts know I am a shimmering network of lies, that my neuro-plague-defective brain lacks mirror neurons, and therefore cannot possibly reflect compassion. Believe nothing I tell you.
***
Humans are all over the flatscreen, huddling in reflective blankets, jaws shuddering from the latest shock. They are Somewhere Else, on some beach or street on the other side of the world, speaking unintelligibly. They are the trembling harbinger-birds of what’s coming, chattering, stunned by broken glass and shrapnel. They cluster or wander, waiting for some kind of safety. Their open mouths and hollow pupils threaten to migrate into our new world. Hard calculations must be made. This is the Homeland®, and its citizens cannot be wrapped in the butterfly-fragile protection of tissue-weight mirrors. Faith is not enough.
Remember though, as you peer in on me, with my small refrigerator without animal parts in it, without the packaged results of extraction machines that pump product from sentient bodies, that I’m the one incapable of empathy. My food choices are simply aberrant perseverations.
These people in their suits, speaking to the Electorate, these are good men, and they will protect you from aliens within and beyond the borders. I’m a different kind of alien, with my rocking and humming, my eyes that don’t meet yours, and my country of silence. I am a burden and a plague for which they will eventually find a Cure, if given enough money. In the meantime, if anyone finds caring for those of my kind too much to carry, and takes matters into their own hands, the good men will offer their compassion and make eloquent calls for mercy as friends of the court. There are never enough services because people like me suck up so very, very much from the responsible citizens of the republic. When we’re killed, we’re lucky if we’re mentioned by name in the coverage. We are the poor, stressed caretaker’s cross to bear. Our lives are meaningless, after all. We are suffering, even if we [don’t share that view.] Everyone says “don’t judge the poor mother until you’ve walked in her shoes…” We try [to say we have shoes too.]
[If you don’t believe me, Google Dr. Phil’s wise, compassionate interview of Kelli Stapleton, who tried to suffocate her autistic daughter Issy. Go to Kelli’s YouTube channel. You can still find her playful birthday video for Issy that shows Issy’s kittens being put in a microwave. Autistics are terrible at figuring out when they’re being played for a joke. They’re such downers. Read the comments. Google the autistic dead boy, Alex Spourdalakis…]*
***
I’m at the customs gate, ready to explode like Arnold Schwarzenegger disguised in cyber-drag in Total Recall. The gate is the point between Passing and Not Passing, and the Blue Puzzle Piece logo waves on the Autism$peaks® flag above my head. I must be adjudged High Functioning, or I will lose my passport. Genetics are not on my side. In my family, we’ve all failed eventually. The test is done every day, and one failure is all it takes. If I’m not a perfect TempleGrandin© model autistic, if my head explodes, I’ll have to go back to my room. And stay there. For years. Until.
My father died alone.
***
I pass so well at some things that some of the Experts put my head in the same scanning machine as the original TempleGrandin© autistic brain was scanned in, very clean and shiny in a secure University laboratory. Only autistics who were really good at pretending not to be autistic were worthy of being put in the machine to have their brain patterns mapped like foreign continents ready for the boots of the New Empire. Only autistics who might be useful are worth studying like that. The ones who don’t pass are only as valuable as what anyone’s willing to pay to take care of them.
[They gave me fifty dollars to have my head riddled with magnetic waves. It was more money than I’d made in a few years, but I recognize faces well for an autistic, so it was worth it to them.]*
***
A lot of autistics are considered ugly for our blank, flaccid, androgynous faces occasionally contorted by paroxysms of emotion, and some of us are considered beautiful for a slight variant of that expression. I’m one of the second group, for better or worse. Even as I’ve gotten older, I look detached, unreachable, pure.
I first made fifty dollars giving a rich college boy a handjob when I was fourteen, and then keeping my mouth shut about it. Not talking about things is something autistics are usually good at. That was money for taxis when my father would forget to pick me up from the bus stop. I did it a few times, because the money made me feel [strong and confident.] The boys made sure I knew they didn’t love me. That was [fine.] I liked girls better anyway, but I still [felt good] about the work, and I wouldn’t say one bad thing about any of it, even today. It was an [honest] negotiation, and I [understood] it. Love was a mess.
It’s getting hard to testify here. There’s a lot of static. I [can feel] your ears stopping up like the plastique has gone off in the cabin.
***
[So I’m rocking, murmuring poetry to myself. I don’t rock when I speak proper prose. The blue-glowing screen is my voice.] *


[harsh black and white comix-style cyberpunk image of feminine face repeating within itself from multiple angles]  

Selene dePackh, artist and author, can be found online at http://asp-in-the-garden.deviantart.com/.   We are proud to announce the first book of her upcoming trilogy to be published by NeuroQueer books, an imprint of Autonomous Press.

Thursday, March 10, 2016

Cognitive Dissonance In A Different Key, by Erin Human

Cognitive Dissonance In A Different Key
Erin Human

CN and TW for ableism, abuse, torture, behavioral training, institutionalization, filicide, and basically everything that could be triggering for autistic people and some parents of autistic children. I will be using direct quotes from In A Different Key that employ profoundly ableist ideas and language. Also a note that I will usually use the acronym IADK instead of the full title of the book, and will emphasize in bold and/or italics some of the quotes from the text.
The press release for In A Different Key : The Story of Autism by John Donvan and Caren Zucker says that this book was “written by two journalists personally committed to widening respect, understanding, and support for the loved ones in their families – and in every family touched by autism.” I want you to keep that sentence in mind as you read my review. I want you to note that the supposed object of this widened respect is the autistic person, and remember that as you read on.
In the preface the authors lay out the premise that this book will be about parents, and that “their two main goals – to find out why their children have autism and to make it go away – remain unfulfilled.” 
Acceptance for the Strangest Boy
IADK then begins by telling the story of Donald Triplett who, as a child, was Case 1 for the infamous autism diagnostician Leo Kanner. These chapters are essentially an expansion of the authors’ 2010 article for The Atlantic, “Autism’s First Child.”
As the Triplett family is praised for resisting the pressure to institutionalize Donald (well, after first trying it out for a year) and using their wealth to ensure his acceptance in the community (well, even though they did send him off to the countryside to be raised by another couple), the ableism in the text is a bit subtle. I thought that I might be criticized for overanalyzing things as I underlined the words the authors used to describe Donald as a child, words like violently inflexible, peculiarities, oblivious, wild tantrums, odd, deficits, emotional indifference, strange, the strangest boy, her taxing child, obsessions, obsessed, obsessive. It was a challenge to be friends with Donald. 
But this was only the first of numerous – too many to count – anecdotes about autistic children which described them repeatedly as odd, strange, violent, disconnected, destructive, dangerous, difficult to handle, their behaviors meaningless, their interests obsessive. As isolated, unspeaking, severe, uncooperative, and having illogical anxiety. They describe autistic children asvanishing, having broken minds, as screamers, runners, and head bangers. These are the words that Donvan and Zucker use to perpetuate a tragedy narrative that is meant to justify every horrible thing that will be done to these children by parents and professionals.
The Donald Triplett story serves as a framing device (the book concludes with a story about his 80th birthday party), because it encapsulates the Donvan/Zucker Model of “Acceptance”: Autistic people are very strange, hard to deal with, and not like us, but it’s not their fault they have a disorder, so we will tolerate them, help them act less autistic if we can, and generously create some token place for them in our community.
The Birth of Autism Moms
IADK spends some time on the Refrigerator Mother myth of the 50s and 60s, and the backlash against this myth: the rise of The Autism Mom (and Autism Parents more broadly). The expiration of the Refrigerator Mother myth, claim the authors, was “due to a concerted effort, launched by parents in the 1960s, to replace mother blaming with research into the causes of autism.”
At no point do the parents in this narrative pause to consider autism acceptance as an alternative to “trying to make it go away.” I know for a fact that some parents in the real world have done that, but they are not in this book. Instead, the authors take it as a given that “parents of disabled children so often feel a twinge of guilt deep inside – the unbearable suspicion that their children are paying the price for something they have done.”
Why this matters, I believe, is that this need to absolve themselves of guilt quickly grew into a grotesque quest to “blame” someone else for “causing” autism. Immeasurable harm has come from that quest, much of it described in detail by IADK. 
This section includes profiles of two autism parents named Ruth Sullivan and Bernie Rimland. We can thank Sullivan for many of the ableist storylines about autism that are still in play today: she “wooed reporters” by describing autistic children as “strange and wondrous,” mysterious, having strange gifts, and made sure to emphasize their physical beauty so as to “make the public care.” Rimland, according to IADK, “always thought of autism itself as his primary enemy, as a foreign entity that needed to be defeated.” These two were the founders of the National Society for Autistic Children (NSAC), which would become the currently active organization, the Autism Society of America (ASA).
Justifying Filicide 
As many autistic reviewers have pointed out, the low point of IADK is when it justifies the murder of an autistic teenager killed by his father. Though filicide sympathizers would have you believe that “mercy killings,” as they call them, happen because a lack of support, IADK is actually more candid: Dougie was murdered because life as a disabled person was seen as not worth living, both by his parents and by the authors who present that point of view sympathetically.
But I will give you the authors’ justifications for murdering an autistic child:
“Alec killed Dougie to put him out of a misery he believed to be inevitable”
“It would only get worse”
“The DA’s competing story – that Alec was tired of the sacrifices required and just wanted his freedom back – appealed more to a common sense that knew nothing of raising a child with severe autism. No members of the jury had such experience. He was found guilty.” 
IADK then neatly parlays this awful incident into the story of how local parent activists successfully exploited Dougie’s murder to garner public sympathy for their campaign to get inclusive education for autistic students. The parents moved the battle for education reform forward “partly because of what happened.” (Later, the authors reveal that it was actually an unrelated legal battle in Pennsylvania that spurred real nationwide education reform, so this filicide justification is totally gratuitous and false.)
Institutions 
The history of institutionalizing disabled people is a history worth knowing. To the extent that we can trust a book riddled with inaccuracies and generously peppered with ableist attitudes, there is some interesting reading on the topic of institutionalizing autistic people and people with psychiatric and cognitive disabilities. To their credit, the authors do celebrate the widespread closing of brick and mortar asylums; however, there are more ways to institutionalize people than by locking them up in buildings.
And indeed, while purportedly exposing the abuses of asylums, the authors also deliver a chilling justification for old fashioned institutionalization. Being a parent is hard enough when a child does not have a serious disability. But when he does, [the] unrelenting pressure cannot help but take its toll. Indeed, there had been some truth in the argument that the doctors made to parents through the decades when they prescribed institutionalization. It was no solution for the child, but it did address, in one stroke, a large part of the parents’ problem, which was real and acute. For some families, twenty-four hours a day of handling severe autism, unrelieved, is a challenge beyond what love alone can handle.”
The Triumphs of Torture
The original purpose of ABA therapy, as developed by Dr. Lovaas, was to “get children with autism to behave in ways that made them look and act less autistic.” Donvan and Zucker tell us that indeed he “achieved mastery” over the autistic behaviors of his test subjects – young children – but with short term effects. Autistic children tended to “relapse” with time spent away from therapy. This is the reason that, to this day, it’s considered common knowledge that for ABA to “work” it must be applied at least 32-40 hours per week and ideally “nearly every waking moment” of a child’s life, as Lovaas applied it in his later studies.
Nevertheless, IADK tells us: “The work […] was worth the time and the suffering. ABA worked.” 
This suffering included at first electric shocks, cattle prods, slaps to the face, starvation, and isolation. Our authors directly justify these techniques. In one story, a child named Dicky was by turns isolated and starved in order “motivate” him to perform in therapy, but Donvan and Zucker conclude: “The team from the University of Washington hadn’t cured Dicky’s autism, but they had helped him find a place in the world.”
Of course, such grotesquely cruel punishments were not palatable to a wide audience of parents, so they were eventually phased out with more rewards and milder punishments phased in. However, the focus on suppressing autistic behaviors was the same. Lovaas specifically said that he did not believe in autistic people, only autistic behaviors. And he famously said in an interview with Psychology Today“They are little monsters. They have hair, a nose, and a mouth – but they are not people in the psychological sense.”
Over and over the authors tell us, “ABA worked, the more of it the better, and a whole lot of it held out a nearly 50/50 possibility of achieving the previously impossible.” They repeat parents’ claims that they were able to “recover” children from autism with ABA. They write how “triumph equals recovery” and describe a parent’s ABA memoir as “a love story.” They celebrate the “retreat” of “classically autistic behaviors.” They use the word “triumph” as they describe the disappearance of autistic behaviors, again and again and again.
And this, remember they have told us, is a book about respect, understanding, and support.
The Myth of the Trapped Child
Earlier in the book we learned that Dougie Gibson, murdered by his father, was an autistic child whose parents believed that there was a non-autistic child trapped somewhere inside of the child they actually had. The authors return to this theme later on by noting, “it had had always been the most tantalizing conception of autism, this idea of the ‘real’ son or daughter hidden behind the mask of autism.”
And: “The fierce desire to locate ‘the child within’ was in many ways unique to families dealing with autism. In families dealing with other developmental disabilities, such as Down syndrome, love translated into embracing he child as he or she was, and providing for as many opportunities as possible without hoping for a radical transformation. The parents of children loved their children no less, but many felt a strong impulse to rescue them, and sought out breakthrough treatments to help them do so.” 
I felt that this admission was curiously revealing. It left me wondering why. Instead of pausing to consider the answer to that question, they go on to mention a number of fad “cures” and harmful treatments that parents have used in their attempts to get rid of autism, once again giving abuse a pass: “But no one could ever refute with certainty the possibility that, perhaps for some extremely small number of people, something real and therapeutic did take place at one time, or at least appeared to.” [Emphasis mine]
The Erasure of Nonspeaking Autistics 
One of the most infuriating parts of IADK is when it embarks on a defamation campaign against Facilitated Communication, or FC. FC is used by some non-speaking autistics (and non-speaking people with other disabilities as well) who need support in order to communicate via typing, iPad, letter boards, and so on. Donvan and Zucker once again employ the tragedy narrative of the “trapped” autistic child and the desperate parents to set the stage for their claim that FC is an utter fraud. The idea that FC is fraudulent has been disproven, but that doesn’t stop them from boldly stating, “it was easy for facilitators and parents to delude themselves, and to forget to suspend disbelief about a patently impossible process, because they so badly wanted it to be real.”
Why is this included in their story of autism? Because it suits their agenda to discredit any and all autistic activists who reject the central autism parent mission to make autism go away. There are in fact non-speaking autistics and other non-speaking disability rights activists who use FC to tell us they do not want to be cured, fixed, or prevented. This might give a reasonable person pause, to hear from the very people autism parents most want to cure – the non-speaking, the so-called “severe” – that they accept themselves as they are. So it is critical for Donvan and Zucker to convince you to ignore these voices. And so they tell you it is deluded to believe that the non-speaking can articulate such thoughts. This is ableism of the highest, the most hateful, order.
Parent Power
There’s quite a lot of detailed sausage making in IADK’s history of parent organizations. It’s fascinating if you are fascinated by that sort of thing (I was), but can be summed up pretty succinctly:
In the 90s there were two big autism organizations run by two sets of parents. The Londons ran the National Alliance for Autism Research (NAAR), and the Shestacks ran Cure Autism Now (CAN). NAAR was all about throwing money at scientists to research causes of autism, and CAN was all about throwing money at quacks who could come up with treatments like chelation, supplements, special diets etc. Meanwhile they both started compiling creepy DNA databases in the hopes of “cracking the genetic code” of autism (read: so they can make it go away). Later they would both be absorbed by Autism Speaks, and, together with Autism Society of America, see to it that Congress passed the Combating Autism Act of 2006.
The sordid tale of Andrew Wakefield is one we’ve all heard by now, but in the IADK telling of the story I had the stunning impression that it was actually the aggressive lobbying of parents, rather than the con job by this one rogue scientist, that stoked the flames of autism panic. The “Mercury Moms” group SafeMinds was granted meetings with the NIH, FDA, and CDC. A book came out, called Evidence of Harm, that received a lot of press as it touted the work of the Mercury Moms who “never abandoned their ambition to prove that mercury in vaccines is what pushed their children, most of the boys, into a hellish, lost world of autism.” This narrative helped push through the Combating Autism Act of 2006, and then the president of SafeMinds was actually given a seat on a US Government committee called the Interagency Autism Coordinating Committee. All of that power based on baseless fear mongering and quack science.
Fake Autistics or Fake Acceptance
Having dispensed of non-speaking autistics by denying their ability to communicate, Donvan and Zucker wrap up their parent-centered autism story by cleverly invalidating the rest of the autistic population – those who can speak.
The IADK version of the history of the neurodiversity movement is distorted beyond recognition; it would be tedious to correct its many inaccuracies, but it’s useful to focus on why they tell it the way they do. In this version, a teenager named Alex Plank launches modern autistic culture by creating a web forum called Wrong Planet in 2004. Plank serves their agenda well because he is not an autistic activist and doesn’t identify with the broader autistic community – Wrong Planet is mainly for people who identify as having Asperger’s and are sometimes called Aspie Supremacists.
That subculture neatly bolsters the IADK argument that there are “many autisms” and that the “kind” of autism that people like Plank have is something completely different from the “severe” kind of autism. [editorial note: there are no “kinds” of autism, but this is a central argument to the book] Ergo, autistic activists who argue against cures and eugenics have no right to say what should happen to the “other” kind of autistics. Totally false, but that’s what Donvan and Zucker would have you believe.
IADK then takes aim at Ari Ne’eman, founder and president of the Autistic Self-Advocacy Network (ASAN). The authors employ a classic autism parent entrapment strategy of framing Ne’eman as both “not autistic enough” and “too autistic” to be an effective advocate for autistic people: “Many parents questioned whether he even had autism – of any kind. Some, however, thought they recognized such a dramatic failure of empathy in his pronouncements about them as parents, or at least a failure of tact, that they took it as evidence that he did, after all, match the stereotype of Asperger’s.”
Intriguingly, Donvan and Zucker zero in right there on what specifically they find repugnant about the neurodiversity movement: while they claim to agree that autistic people deserve respect, dignity, and safety – which, they assert, was already achieved through deinstitutionalization – they cannot accept the “radical proposition that a child with severe autism was not, in some fashion, sick.”
Let’s look at that one more time, because this is indeed the crux of the Fake Acceptance model that IADK puts forth: accepting autistic people means keeping them out of institutions while working on curing them of their sickness by any means possible. Or, to put it in the cutesy language they employ at the end of the book, “we would recognize, and take steps to welcome and protect, the odd man out.” And the thing that really makes my ears ring, the cognitive dissonance in this thesis, is that I fully believe that the authors are 100% sincere in thinking that that is the pinnacle of autism acceptance.
History of the Oppressors
In A Different Key is subtitled The Story of Autism. Note that it’s “the” story, not “a” story. And I do believe the effort to lay out “the” story is sincere, in much the same way that your 8th grade history textbook told you how America was discovered by Columbus in 1492. This is a history of the oppressors by the oppressors, presented as neutral factual information. All the better to convince you that their biased view is truthful – indeed, as they at one point describe parental love, “unassailable.”
“For forty years, from the 1960s onward, the work of autism advocacy had been a mission carried out almost entirely by mothers and father dedicated to making the world better for their kids.

Erin Human is a writer, cartoonist, and Art Director for Autism Women's Network. You can find her writing at eisforerin.com and her cartooning is at humanillustrations.com.








Wednesday, March 9, 2016

Countdown to Spoon Knife: from "How to Time Travel in a Closet"


Today's excerpt from The Spoon Knife Anthology appears in "How to Time Travel in a Closet" by N.I. Nicholson.

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.)




I’ve piloted back to this moment to see you
as you were, a skeleton carrying your own ruined self –
a hungry ghost, deflated shriveled skin, mouth unhinged
to scoop up stray bits of the love you never got –
over your shoulder. You clobbered the girl that I was
with your miserable sack of nothing, beating into me
the whippings you got as a girl. But know that
I am rebuilding myself:

I have the technology, I am learning how
to regenerate, and I am reincarnating as a queer
man. Are you surprised? I am becoming what you
hated most. 

Monday, March 7, 2016

Countdown to Spoon Knife: from "Kelly's Blackbird" by Nick Walker

Today's excerpt from The Spoon Knife Anthology comes from "Kelly's Blackbird," by Nick Walker.

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.)



This year I’m in the Gold Star class for art.

I don’t like the name. The Gold Star class. Sounds like we’re in kindergarten. If I hadn’t been sent to this place, I’d be a freshman in high school now. Instead, I’m in the Gold Star class.

Despite the name, the Gold Star class doesn’t entirely suck. For one thing, no one gets into the Gold Star class unless they have a solid track record of making it through art classes without engaging in what the staff call disruptive behaviors. Most of the time I’m a great fan of disruptive behaviors, but it’s nice to be able to concentrate on my art without being distracted by a lot of shouting. And without having to watch out for flying crayons, clay, paint, and other airborne hazards. And without having my table crashed into by people who are fighting, flipping out, or being tackled by staff. The absence of that sort of thing makes the Gold Star class a major improvement over the art classes I was in last year.

Another improvement is that in the Gold Star class we get to use the good art supplies they don’t trust the other kids with. Like today I’m using this little wooden-handled tool called a gouge, which looks like the offspring of a chisel and a potato peeler. The kids in the other art classes don’t get to use anything sharp. Not even pencils. Which is ridiculous, because they all use pencils in math class.

I’m using the gouge to carve a picture of a bird into the surface of a square piece of linoleum. I’m almost done, except for a few final touches. Then the square of linoleum can be coated in ink and pressed against paper to make prints. That part of the process isn’t so interesting to me, so I might skip it. The carving is the interesting part.

The art teacher advised me to draw the outlines of the picture on the linoleum first, but I decided to ignore this advice and just let the bird emerge as I carved. And now here it is, almost fully emerged from its hiding place within the gray linoleum, spreading its wings like it’s about to take flight.

“That’s really nice,” a girl’s voice says from somewhere above my right shoulder.

At first I don’t even realize it’s me she’s speaking to. Once I get into working on something, it’s hard to shift my focus. Fortunately, someone else is here to help me this time. A head with dark hair and neon pink lipstick leans sideways into my field of vision. “Hey, queerboy,” the head says. “Wake the fuck up. She’s talking to you.”

This is Trina. I don’t want to deal with Trina, so I twist around to look up at the first girl, the one who said “That’s really nice.” She has pale white skin and long straight hair a dozen shades of blonde. This is Kelly. Kelly and Trina are best friends, even though Kelly is always kind to people and Trina is mean to everyone except Kelly. No one is mean to Kelly, at least not here. General opinion among both guys and girls is that Kelly is the coolest girl in school. Though even the kids who are considered cool in this place were once outcasts among the normal kids, so I guess coolness is relative.

“Will you make me a blackbird like that?” Kelly asks.

Blackbird?

Until this moment I hadn’t given any thought to what kind of bird it might be. I don’t think it looks like any real-life bird at all. It’s come out more abstract than realistic, the carved lines jagged and wild, emphasizing motion. If I had to guess, I’d maybe say it was a raven.

But girls mostly don’t talk to me at all, certainly not girls like Kelly who is the coolest girl in school and also so beautiful it hurts to look at her. So now it’s a blackbird. And I’d gladly make her one, or give her this one when I finish it. Or maybe I should use this carved piece of linoleum to make a print for her?

Before I can decide which option would be best, Trina grabs Kelly by the sleeve of her denim jacket and pulls her away, walking fast. “Come on,” she says. “Fuck this shit. You don’t need to talk to that little fucking faggot.”

Kelly’s pretty easygoing, but in ordinary circumstances she’d never allow Trina to drag her around like this. In the team of Kelly and Trina, Kelly is the leader and Trina is the sidekick. But Kelly seems to have become mesmerized by this bird I’ve carved, and she just looks at it over her shoulder and blinks in a bewildered sort of way as Trina leads her back to their seats on the other side of the room.


I go back to putting the finishing touches on the carving. By the time I’m done, art class is almost over. Across the room, Kelly and Trina are whispering to one another with fierce intensity, heads together, not even pretending to be working on their art projects. This doesn’t look like the kind of conversation I want to interrupt, so I guess I can’t just walk over there and hand my finished carving to Kelly. Instead, I hand it in to the art teacher for safekeeping. The art teacher loves it, and by the time she’s done bubbling about it the bell has rung and Kelly and Trina are gone. 

Saturday, March 5, 2016

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.

Friday, March 4, 2016

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.