Friday, March 28, 2014

Reading My Own Screams (Creative Writing as Culture Theory) by Michael S. Monje Jr.

Dear Matt: I know. You aren't alone.

Literature in my lifetime has been a living nightmare for me.
I grew up idolizing a generation whose "best minds
were destroyed
by madness"
and it's had its effects.

For years, when I was a "little professor", my parents would brag
about my impending intellectual success.
Looking back, it's not like I gave them much else,
they couldn't crow about my little bird chest,
and when I hit puberty and put on sixty pounds,
it didn't hit my pecs.

Still, caught between madness and parental expectations,
I managed, autistically, to squeeze between cracks
and wind up on the outside of their influence.
As I stood, blinking in sunlight for the first time,
I realized that I could not discern the shapes
of the things that had been casting shadows in my cave,
because they were merely blobs to my
unaccustomed eyes.

So I bought sunglasses and walked off into the distance.
I had to wander in the desert of my parents' preconceptions,
not for forty days, but for as long as it would take
for me to see that they had raised a lie,
not a boy.
Not a genius, either,
but perhaps a lateral problem solver
who could wow the world with showmanship.

In those years I drifted between Willa Cather and pre-Raphaelite daydreams,
picked up and set down Shakespeare,
investigated pre-fascist artifacts of the Vortex
painted a Black Rainbow
and made myself go to the edge to understand
how these things boiled in a pot of political influence
class-based disempowerment
and cognitive disenfranchisement.
I enjoyed none of it, for the people who were set to teach me
couldn't reach me with selections of literature
mostly chosen for its appeal to their
middle-class well-fed properly-raised culture.

None of them taught the Beats. To learn those,
I had to first submerge myself in what others called crazy.
Coffee shop philosophers with PhDs and no employment prospects,
they eyed me with leers usually only seen in fratboy movies,
and I was the whole sorority.
I never did take an invite up to a cheap apartment,
but I might have batted my eyes and then made nice
until I got a free pack of smokes or a sympathetic hummus plate.
I spent those years hustling food from those who never ate,
brushing my youth against the pretentious forty-somethings who
never understood that they weren't failing to
live up to Bukowski's legacy. Their insolvency
was proof they were succeeding.

Somehow those coffee shop lessons failed to take,
and I returned to the academy, ready to professionalize my meanings,
sharpen abstract rhetoric, and get a job teaching.
After three years' training, though, I felt my craft floating away from me,
and I knew that I had made a mistake,
and that was when I realized that the madness,
"starving, hysterical, naked,"
was the incubator for the revelations that I needed.
Before I could choose for myself, though, I was plunged into it
and my much prized reading comprehension was desolated.

I spent two years unable to follow anything more elaborate
than a science fiction television tie-in novel written
for seventh-grade geeks like I had been
in those ancient days before my travels in the desert
brought me to the mountains of madness.

And then I emerged from it with a diagnosis.

Now, once again able to parse jargon but extremely limited
in my semiotic stamina, I have to ask for access
but only sometimes, and it confuses
even the other scholars I seek to work with.

The problem is that once you've touched the madness,
you can never analyze it. Your mind slips the bonds imposed by syntactics
and sees the world from a point of view outside
any held by any creature in existence.
In that state, the reason for your pain is
both concrete and numinous,
and no one who hasn't experienced the madness can parse it.
This does not mean it is without merit.

The way to track the mind that's slipped behind
such a screen of word salad and gesticulated meaning
is to see the ways that it was pushed out of the stream
that the rest of our communication swims in.
It's not done unintentionally. Madness is protective.
You'll never get there with invective cloaked as
medical systems though, because imposing conformity
is the surest way to convince someone who has retreated
that there is nothing back in our language worth saving.

The only way to help is understanding. The only way understanding carries meaning
is if you resign yourself to knowing that there can be no telling,
only showing,
and knowing
that you must entangle yourselves once again in interpretation
if you hope to have any advancement in your comprehension of minds and cultures
you were not raised within.
My madness has shown me this: That the academy has been engaged
for a half century
in settling for telling.
We have forgotten that literature is our laboratory,
substituted narcissistic meditations for our old social hypotheses,
and stopped writing outside our audience's immediate perceptions.

It is time to shake things up,
to challenge the lazy,
who rest in tenure on laurel leaves made mostly of jargon
used to dice up and discuss white visions of conquered cultures,
to rephrase queer identities as structures mirroring heteronormativity,
and to look at the neurodivergent while refusing to see:

We are communicating.

Speaking is a prison when its the only thing you're given,
and being told as you gesticulate and make eyes at someone who can't understand
the syntax of your body
that you are the one missing social cues
is really something.
We speak with bodies, performing.
Our rhetoric is somatic, seeking meaning
in the entire experience of being,
and we can only argue with you
when our stories are not deemed to be nonsense,
but rhetorical performances.
We can't argue like you,
but we can write scenes showing
how your prejudices and expectations
fail to follow
any of our requests
and make us Howl.

--Michael Scott Monje Jr.

Editor's Note: "Reading My Own Screams (Creative Writing as Culture Theory)" by Michael S. Monje Jr., was originally posted on zir blog Shaping Clay earlier this morning.  Since you have just read it, you may imagine why I instantly begged for permission to put it on NQ too.  Love, Ib

[Picture photo of Michael Scott Monje Jr. in a white t-shirt.]

Monday, March 24, 2014

Quiet Hands, by Julia Bascom

TW: Ableism, abuse
Explaining my reaction to this:

means I need to explain my history with this:


When I was a little girl, they held my hands down in tacky glue while I cried.
I’m a lot bigger than them now. Walking down a hall to a meeting, my hand flies out to feel the texture on the wall as I pass by.
“Quiet hands,” I whisper.
My hand falls to my side.
When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed.
In a classroom of language-impaired kids, the most common phrase is a metaphor.
“Quiet hands!”
A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It’s silent, until:
“Quiet hands!”
I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.
The literal meaning of the words is irrelevant when you’re being abused.
When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.
Hands are by definition quiet, they can’t talk, and neither can half of these students…
(Behavior is communication.)
(Not being able to talk is not the same as not having anything to say.)
Things, slowly, start to make a lot more sense.
Roger needs a modified chair to help him sit. It came to the classroom fully equipped with straps to tie his hands down.
We threw the straps away. His old school district used them.
He was seven.
Terra can read my flapping better than my face. “You’ve got one for everything,” she says, and I wish everyone could look at my hands and see I need you to slow down or this is the best thing ever or can I please touch or I am so hungry I think my brain is trying to eat itself.
But if they see my hands, I’m not safe.
“They watch your hands,” my sister says, “and you might as well be flipping them off when all you’re saying is this menu feels nice.”
When we were in high school, my occasional, accidental flap gave my other autistic friend panic attacks.
I’ve been told I have a manual fixation. My hands are one of the few places on my body that I usually recognize as my own, can feel, and can occasionally control. I am fascinated by them. I could study them for hours. They’re beautiful in a way that makes me understand what beautiful means.
My hands know things the rest of me doesn’t. They type words, sentences, stories, worlds that I didn’t know I thought. They remember passwords and sequences I don’t even remember needing. They tell me what I think, what I know, what I remember. They don’t even always need a keyboard for that.
My hands are an automatic feedback loop, touching and feeling simultaneously. I think I understand the whole world when I rub my fingertips together.
When I’m brought to a new place, my fingers tap out the walls and tables and chairs and counters. They skim over the paper and make me laugh, they press against each other and remind me that I am real, they drum and produce sound to remind me of cause-and-effect. My fingers map out a world and then they make it real.
My hands are more me than I am.
But I’m to have quiet hands.
I know. I know.
Someone who doesn’t talk doesn’t need to be listened to.
I know.
Behavior isn’t communication. It’s something to be controlled.
I know.
Flapping your hands doesn’t do anything for you, so it does nothing for me.
I know.
I can control it.
I know.
If I could just suppress it, you wouldn’t have to do this.
I know.
They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”
I know.
I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.
I know.
I need to have quiet hands.
I know. I know.
There’s a boy in the supermarket, rocking back on his heels and flapping excitedly at a display. His mom hisses “quiet hands!” and looks around, embarrassed.
I catch his eye, and I can’t do it for myself, but my hands flutter at my sides when he’s looking.
(Flapping is the new terrorist-fist-bump.)
Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you…
if you…
if you…

Then I…

Editor's Note: Quiet Hands, by Julia Bascom, was originally posted on her blog Just Stimming... in October of 2011.  It has been one of the most pivotal pieces of neurodivergent literature ever since its writing and we are delighted to be able to bring it NeuroQueer readers here with permission. Love, Ib

Thursday, March 20, 2014

Applying For Social Security Benefits, by Tara Ayres


These notes are intended to help you understand the framework that governs disability eligibility determinations for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) and to help you navigate the claims process.

1.    Ability to Work
The definition of disability requires that you be unable to work for at least a year or have an impairment that is expected to end in death. Eligibility for Social Security disability benefits is all about inability to work. There are lots of people with real disabilities who don’t qualify for SSDI or SSI. The standards isn’t whether or not you have a disability, it’s whether or not you’re able to work despite your disability. And they don’t care if there are jobs you can’t do because of your disability; they care about whether there are a significant numbers of jobs in the general labor market that you CAN do. And that can seem pretty arbitrary, since they don’t look at the economy, unemployment rates or discrimination in determining one’s ability to get a job.  It doesn’t matter if the potential jobs pay well (which kind of makes sense, since disability benefits are only going to provide a poverty-level safety net anyway.)

2.    Learn About the Process
There’s a lot of information about the criteria for getting disability benefits on the Social Security Administration website. Read them; they’re intended to help you with your claim. Better yet, read them with a friend; they’re long and complicated and kind of difficult to slog through, so talking about them as you go is helpful.

3.    Listing of Impairments
There is a “The Listing of Impairments” which you can find on the SSA website. Entitlement to disability benefits begins with the Listing of Impairments. If you “meet or equal” a listing, you’re automatically entitled to SSDI or SSI (assuming that you have enough insurance credits or meet the income guidelines.) It’s a stringent standard. For example, amputation of both hands is a listing. Amputation of both feet is NOT a listing, but amputation of both feet combined with a medical inability to use a prosthesis IS a listing. Just about anyone who relies on a wheelchair for mobility is going to meet or equal a listing. You should take a look at the Listing of Impairments on the SSA website and see where your condition(s) fit. It will at least give you an idea of the level of severity they’re looking for.

4.    Functional Restrictions and Vocational Adjustment
If you don’t meet or equal a listing, but you have a disability that is functionally limiting, they’ll turn to looking at what you can do, and the impact of age, education and prior work history on the likelihood of your being employable. Can you do a previous job? If not, can you do comparable jobs? If not, are there other jobs that you can do in the general economy? Basically, if you are under age 55 you’re going to be expected to be able to find some kind of work, i.e. “adapt vocationally,” unless you meet or equal a listing. It doesn’t matter if those jobs pay a living wage, or even exist in your town, if they exist in sufficient numbers in the general economy. If you can do minimum wage unskilled work despite your functional restrictions, you won’t qualify.

5.    Medical Records
Medical records are crucial, and often really difficult to obtain. There are some hospitals and clinics that can take a year or more to fill medical record requests. Don’t assume that because it’s written down in your chart somewhere that SSA will get a copy of it. It’s not unusual for someone who is eligible for benefits to have to wait for months to formally be awarded benefits, because the disability examiner just can’t get her hands on any records, or on the right records.  

You can speed up the process by gathering records yourself that prove diagnosis (biopsies, MRI, scans, x-rays, blood tests, pathology reports) and functional restrictions (PT or OT assessments, etc.) And if you get the relevant medical records from your doctors yourself, you can see if there’s a case there to support your claim, as well as shortening the time it takes to get a decision.

6.    Talk to Your Doctor/Providers
It’s important to know what your doctor will say, since in addition to copies of your chart, SSA will often ask the doctor for opinions to guide them in interpreting the medical records. Help him/her fill out the forms (or fill out a form yourself, and provide it to your doc for use as a reference.) Don’t apply for disability benefits if you haven’t talked to your doctor/providers about your day-to-day restrictions, since if your doctor doesn’t understand what’s going on with you, s/he’s going to provide bad information to SSA. (On a personal note: I had a Physical Therapist who evidently went on and on in her notes about my positive attitude, how well I was doing, and how much the exercise we were doing together was helping my fatigue. She didn’t mention that my fatigue was better, but that I couldn’t walk! Luckily, I discovered this during a phone conversation with the claims examiner, and mentioned that my fatigue was indeed better, but that I still used a wheelchair. Because my leaving work was caused by fatigue, not by my wheelchair use, and that’s what the records focused on, she had missed the wheelchair use entirely.)

7.    Not Following Medical Advice
You can’t get benefits for even a serious impairment if you refuse treatment that would have made you better (or better enough that you could work.) For example, if you have uncontrolled seizures that prevent working, they’re going to want to know that you’re taking your medications and having the seizures anyway. Obviously, this can be tricky, since we don’t always agree with our doctors about the best course of treatment. If you’ve had conflict with your doctor about treatment and have been labeled “non-compliant” this can cause you real problems. If you have a current doctor that you have a good relationship with, then make sure that he or she addresses this issue in your records. Unless inability to take or remain on meds is itself part of the impairment (e.g. someone with psychosis who goes off meds when already symptomatic) failure to follow treatment will be held against you if the treatment is expected to significantly improve your ability to function.

8.    ADLs
A lot of people who don’t meet a listing end up getting benefits based on an assessment of their “activities of daily living.” It’s really hard to quantify pain, but you can quantify how many hours a day you actually function, how pain meds affect your ability to concentrate and the impact of that on being able to get places on time, or to pay your bills, or other things in your daily life that mirror work functions, from showering to cooking to making the bed.

Don’t be surprised if the questions/forms make it sound like they think you have a mental impairment, whether or not there’s a mental health component to your disability. The guidelines for functional limitations that were developed to help assess mental impairments are often used to assess the functional restrictions that go with multiple, overlapping disabilities.

In addition to asking your doctor(s) about your ADLs, they’re going to ask you, and they’re also likely to ask someone close to you (spouse, partner, roommate, best friend) to describe your daily activities. It’s important that those documents don’t conflict with each other. If you say you can never get out of bed, but your doctor or therapist talks about your activities in a way that overemphasizes them, they’re going to believe the doctor. And examples of things you can do, but require extraordinary support to do because of fatigue or other impairment-related issues, can be helpful (I can visit my Aunt Tilly, but someone has to drive me there, and I have to use a wheelchair to get from the front door to her room because it’s too tiring to walk that far. The last time that I walked to her room, I got so tired that I fell trying to get up the 4 steps into my home.)

9.    Impact Over Time
Because it’s hard to quantify things like pain and fatigue, and to measure their impact on someone’s ability to work, SSA is going to want to see how you’ve been doing over time. If you haven’t worked in a long time, but you’ve been going to school full-time, they’re going to use that as evidence that you could work. If you’ve had to drop a lot of classes because you couldn’t handle the load, that’s evidence in your favor. If you’re engaging in a bunch of volunteer activities that mimic working, they’re going to assume that you could do that for an employer. If you do those volunteer activities an hour at a time with a two-nap in between, that’s helpful data.

This is one of the reasons that some claims are denied the first time; until you’ve shown that you can’t work for a year, they may assume that you’ll be able to go back to work. It’s really hard to tell with fatigue, or an exacerbation of something like MS, or fibromyalgia, whether the problem’s going to persist. The good news is that, even if you’re denied initially because they just can’t determine longevity, if you appeal and they have a longer time frame to look at, if you do get benefits they’re likely to have an award date that goes all the way back to your original onset date.

10. Consultative Exams
If they can’t get your medical records in a timely fashion (or at all) they might send you for a physical exam by a doctor that they contract with. Those are almost never a good idea for someone with a lot of different impairments that add up to disability, since it’s hard for a snapshot to accurately reflect who you are. If you get a letter inviting you to an exam like that, I highly recommend calling the disability specialist handling your claim (their contact information should be on the letter) and finding out what they’re missing from your medical records that caused them to schedule the exam. It could be that you can go sit in the Medical Records area and make them cough up your records, or bug your doctor until s/he completes the form that SSDI needs. (See #12, below.)

Regardless of whether or not you can get additional records, don’t just skip the consultative exam, since that’s likely to result in an immediate denial of your claim. If you can’t make the exam for some reason, contact the person handling your claim and let them know so that they can reschedule it.

If you do end up having to go for an exam, make a list for the consulting physician about your impairments, what your understanding of them is, and how they affect you. The more information you can provide to make their job easier, the better. Also, don’t minimize or exaggerate your symptoms; be realistic. And be friendly and polite with the doctor; they may try to be unbiased, but they’re likely to be influenced by whether or not they like you, if you gave them a hard time, etc. And there are consulting physicians out there who suspect every applicant of fraud, so don’t give them ammunition. If you can walk a few steps, don’t claim that you can’t get out of your wheelchair. Do what they ask, and if what they ask is likely to cause you pain, tell them that and see if they really need you to do that. It’s much more effective to try and fail than to just refuse.

11. Be Courteous
This should probably be obvious, but be friendly and polite with the person handling your claim, regardless of whether or not you think they’re an officious, bureaucratic jerk. I tried hard to make decisions based on the facts of the case, not based on someone’s personality or interaction with me, but I was surprised at how often applicants were nasty to me, when I was the one who would decide whether or not they got benefits. I understand that pain and fear and not having an income make us cranky, and make it hard to be pleasant to the bureaucrat asking you intrusive questions. But I certainly heard enough chatter from co-workers to know that it wasn’t necessarily painful to deny a claim for someone who had been abusive to them. Don’t give anyone that excuse. Yep, be the polite, cheerful crip with the disability examiner who is handling your case. And they’re people, too, just doing their jobs, many of whom actually want to help you if they can.

12. Background on the Claims Structure
A little structural information: the Social Security Administration contracts with the states to make the decisions on eligibility for SSDI and SSI. Income verification for SSI, and insurance credit validation for SSDI are handled by federal employees, but the disability determination is usually handled by someone in a state agency in your state of residence. There will be one person assigned to make the decision on your case, and usually that’s the only person you’ll have contact with (if you have contact with anyone.) If more than a few months go by without hearing anything on your claim, you might want to find out what agency in your state handles social security disability decisions, and contact them to talk to the examiner who is handling your case. Find out if they’re having trouble getting the evidence they need, what’s missing, and if it would be helpful for you to go sit down in the medical records office of your hospital or clinic until they give you those records. One of the things that disability examiners are evaluated on is their average case processing time. Making their job easier and helping them look good is almost never a bad idea. There’s no guarantee that the person will want or need your help, but it might be useful to them. Again, be nice to them when you contact them. And if you just can’t be nice to them, consider getting a friend or family member to make the contact.

I was a disability specialist in Wisconsin a long time ago. The programs are supposed to be consistent across the states, but mileage may vary.

© Tara Ayres, 2014

[Pic: Tara Ayres is a writer, singer, actor, director and general theater geek, as well as a life-long community organizer. These days she raises hell about disability justice, especially about access to the arts. She emceed Madison, WI’s first Disability Pride event in 2013.]

NeuroQueer Buttons!

Melanie Yergeau of Autistext designed these hot and awesome Neuroqueer buttons and they are available now!  W00t!

Look at this:

[Pic: A pink button bearing the text "neuro queer," with a little rainbow mobius strip superimposed in the middle of the button.]


[Action shot 1: NQ buttons on (L to R) Amy Sequenzia, Emily Titon, Melanie Yergeau and Ib Grace. This pic was taken at AutCom in Denver (by Judy Endow if I remember it properly).]
[Action shot 2: NQ buttons on (clockwise) Johnna Keller, Margaret Price, Stephanie Kirschbaum, Ib Grace and Corbett O'Toole. This pic was taken at the Disability Disclosure in/and Higher Education Conference at the University of Delaware by Elaine Gerber.]
These are totally affordable and all proceeds go to trying to get money to help fund starting a scholarship to get nontraditional neurodivergent scholars to disability studies conferences (for now it is specifically Society for Disability Studies, but we wish to expand, one button at a time :D ) !! So buy all the colors!! Buy one for all your friends!! And your cat!!

Click here for the original story of when Zazzle decided we were offending ourselves.  <--This is worth it to click, because it is very funny.


PS Here's that buying address again. ;)

Monday, March 10, 2014

Exile and Sound, by chavisory

If I were young, as once I was
And dreams and death more distant then,
I would not split my soul in two,
And leave half in the world of men.
-Neil Gaiman, The Fairy Reel

I read Eli Clare’s Exile & Pride for the first time recently, and it was one of my favorite books before I was even halfway done reading it.
Clare writes about loss of place and loss of home in a rural place as a result of embracing a queer identity.  And I didn’t think that part applied to me, initially—I’m not so much visibly, apparently genderbent.  I’m not often overtly read as queer and don’t have to expend energy either in concealment for physical safety, or in making sure I present in a certain way so as not to be misgendered; I’m very unlikely to be in danger that way.  At this point I consider myself unlikely enough to wind up with a partner of any stripe, anywhere, that that’s not such a harsh consideration.  It’s not really the primary identity marker that’s most impacted my life.  I didn’t feel that I had to leave home to be safe in that way, or to find a queer community; I didn’t realize that I really was until after I had already moved away for college, and by that time I was deeply involved in the theater world.  So.
Yet I had never really thought before I was rereading that chapter recently, to connect a similar variety of exile not to being queer, but to being autistic.  But it’s true.
Far less so in the sense of avoiding overt violence or ostracism—in which regard a smaller place might even be safer, but in terms of employment possibilities and avoiding isolation.  To be able to work and to have a certain kind of community, and to maintain the kind of freedom of movement that I need, I practically have to live in a city.
Despite my skill set, I can’t work in just any industry that I might choose.  The social language is opaque.  The social and aesthetic expectations of women are impossible.  People call me articulate and yet don’t understand a thing I say.  Contrary to the pronouncements of my teachers in grade school, I can’t in fact do anything I might want to do…not for lack of ability to learn and teach myself, but because it’s nowhere near that simple.
There was a time when I believed that isolating myself as far from most of humanity as possible was going to be the only way I could maintain control over my own life.  With the added advantage of being always close to the natural world.  Now that I’ve experienced that as not being true, the easy community of a city with a large performing arts industry is a terribly hard thing to consider giving up.  But that doesn’t make it easier to do without the aspects of rural life that I need and crave.
The place where I grew up—aside from the ongoing decimation of its landscape by persistent development of new strip malls—is a place where, as a teenager, I could see I would never, ever, have unquestioned control of my own life.  Where I would never be free of having to defend my own judgment and boundaries, my own space and time.  Where my choices and knowledge of my capabilities were ever, ever going to be good enough to be left alone.
For other reasons it’s easier and safer to live here, too:  this city has, compared to a lot of other places, an immensely clear and simplistic social code.  Public transit available 24/7 means I have far fewer meltdowns, because I can always escape a situation without the anxiety of depending on the whims, or sobriety, of other people for a ride home.
But my heart will never truly belong here.
I need wild places.  I need open space and stars in the night sky and forest to wander in.  I miss the night songs of owls and freight trains and the wind over open fields.
I’ve been realizing how much I need and miss the influence of natural sound in my life.  It’s like the cadences of those things are the language that my emotional concept of the universe was wired in.  I need it in a way so deep I don’t even know where to begin or how to describe.
It’s strange to think of being starved for sound in New York City, but it can feel that way.  The city is so abundant in every other variety of overstimulation imaginable, but incredibly poor in that one, although there’s plenty of noise.  It’s not the same thing.
I remember a morning when I was about five years old, waking up to the sound of birdsong—a ridiculous density of birdsong, even for semi-rural Missouri in the springtime—and it sounded like a perfectly coherent composition, with melody and orchestration.  And I was certain that they were singing just to me.
I was visiting a friend in Georgia recently and stood alone out on the porch one night, listening to the night for a bit.  I had nearly forgotten that nighttime sounded so alive, so powerfully conscious, and I felt despair at the thought of going back to the traffic and horns and sirens and constant grinding drone of window air conditioning units.
One of my recent productions took place largely in a wooded clearing in the forest; the sound design had a lot of birds and forest sounds.  At the first day of tech, while I was setting up my station at the tech table, the sound designer unleashed a test cue of a thicket of springtime birdsong, and I nearly cried with relief at hearing such a thing, never mind we were really still just in a dark, stuffy theater in midtown Manhattan in the middle of winter.  I started playing the birdsong cues for the duration of the time it took me to sweep and mop the stage every night.
Lying exhausted in bed, the thickness of the silence in my room is oppressive.  Not true silence, of course—there’s still the hum of hot water running through the building, of electrical things, of my roommate still awake in her room down the hall.  But the thick, claustrophobic lack of movement of air, of living things, of tree branches in the wind and falling snow, keep me tense and awake and feeling trapped and isolated, from some important aspect of creation itself.
This is why I feel homeless.  There’s practically nowhere I can live without lacking something as essential as breathing to me.  Either connection to people, a social network that I’ve come to love and depend on, and the ability to work consistently and therefore support myself and maintain my autonomy.  Or connection to my emotional and spiritual sense of the world.
I know that there are people in other cities, that there are theater communities in less densely urban places, but the prospect of starting over is daunting, to say the least.  Because having a safety net isn’t something I ever get to take for granted.  Because there are people who know me, at least a little, and trust my work here.  Because I have a lot of friends here, but I have a couple of people here who…we can go get a drink and just talk and just understand in a way that I spent about 30 years looking for in another person.  It’s hard to think of being farther from that than just being able to say “Want to go to Bettibar tonight?” even if we don’t get to do it very often.
If I go down to the pond in Central Park in the evenings sometimes, I can hear the little clicking sounds that the bats use for echolocation.
I don’t know where I can be without this sense of aching loss.  It’s like, if I’m whole, I have to long eternally for one or the other.

[Photograph is a close-up of a robin in early spring, perched on a fence in Central Park, against a powder-blue sky with clouds.]

Monday, March 3, 2014

NeuroQueer: Voyeuristic Perspectives, by S. Rooster Canessa

NeuroQueer: Voyeuristic Perspectives
A Story Propelled by the Phenomenon of Curiosity

I. Introduction to Photo Series
My senior project is a photo series containing narrative. I am exploring the intersection between the Neurodiversity paradigm and the Queer studies, forming NeuroQueer. The origin of this dialogue began as I read the DSM-5 elaboration and definition of Gender Dysphoria. 

Gender Dysphoria is considered by the American Psychiatric Association (APA) as a mental illness, continuing the stigmatization and pathology of illness/disease when it comes to not fitting in the very limiting personalization of Male or Female. In this photo series I am taking a voyeuristic positionality. This photo series is composed of individuals who do not follow the gender norms presented by society. They are creating their own definitions of individuality, in which the gender spectrum is transformed into a gender sphere. I am not claiming nor marking these individuals as gender non-conforming, third gender, nor NeuroQueer. I am simply presenting them as they see themselves, removing the labels and allowing for self-expression without the need to personalize what they mean.

Identity is a conundrum. My curiosity was manifested through a series of questions that I began to ask myself since a very young age, age 5. How is identity formed? What does it mean to be a cis-gendered girl and wanting to be a boy? What does intimacy look like? What does authentic self-expression embody? What is authenticity? What is the self? What are we in relationship to others? Who would we be identifying with if there where no others?

Based on my own experience, I realized that this question of identity is of great urgency. I see that there is a conditioned human need within me to define what this gender non-conforming spectrum looks like, or means. As I use the word NeuroQueer, I want to state that I am not looking for a definite definition. Yet I am looking for an umbrella that incorporates identities defined such as Third gender, but not limited to this one word. When the body does not reflect one’s core being, there is an urgent mean to find a place in which one can exist. A place in which self- acceptance and pride of who one is, is respected, embodied, and lived.

It has been my own quest of self acceptance and love that has lead me to see outside of myself, into the lenses of others to understand the complex dynamic of identity and how individuals choose to live in this world as themselves. I want to state that this photo series is an attempt to bring a more inclusive yet variant portrayal of identity and how being oneself looks like. I also want to state that this is the beginning of my own exploration as a portrait photographer and NeuroQueer scholar. I will make mistakes and might not include some individual’s perspective, but I am here with my heart open, clean ears and blurry eyes. I also am a white, Salvadorian, bipolar, middle-class, white passing, androgynous cis-gendered female, a NeuroQueer eccentric who connects more with those who are known as “gay men,” and my identity is something I am still exploring.

In this series I present a small sample of diversity within social-economical frames, color, race, neurodiversity, queer, culture, ethics, and self. I am aware of my privilege and want not to be brought up or down because of it, I simply want to observe and learn about this human existence, specifically identity.

II. The Story
This series started formulating about 11 months ago. I was very interested in looking into the phenomenon of curiosity. I wanted to understand what made a human being curious, and how this curiosity vibration was kept alive. Beata Bishop states (2003), “to my mind, curiosity is one of the greatest gifts of humankind; it is what drives creativity and inventiveness, art and science” (pg.16). Bishop states that it is our job to remain curious, and continue to ask “Why?” Bishop presents curiosity, inventiveness, and thus creativity, to understand more about the world. Through this we can keep an open mind and discover more authentic ways of being and healing. And so here I began, focusing on curiosity and leading myself to Neurodiversity.

This authentic expression was first presented to me through the Neurodiversity paradigm. In which autistic individuals challenged society and presented different neurological wiring as another category of the self, a different way of being.

I kept asking myself why I was so focused on autistic individuals; I found a kind of unconditioned essence I found refreshing. I see now that it was my own lack of authenticity, which held the “authentic” as topic of deep curiosity.

Why begin with autism in order to understand the paradigm of Neurodiversity? Because they are the pioneers! The Neurodiversity movement has been so far dominated by autistic individuals who believe and advocate that their condition is not something to be fixed or cured, but rather a human way of being that must be respected, like that of sex, gender, and race. Neurodiversity consists of the idea that there is more that one neurological and brain wiring structure amongst the human population. In this paradigm, autism and other neurological conditions are a natural variation among humans. As this paradigm allows for individuals to move away from seeing autism as a pathology, and moving towards the notion of a diversity within different human ways of thinking, knowing and expression. In this paradigm different ways of performing are seen as a natural variation of human development and expression. Within this paradigm we encounter two variations of brain wiring, those who are neurodiverse and those who are neurotypical. Neurodiversity embraces the perceptions provided by “abnormal” minds to understand and visualize how the brain assembles its parts.

Michael Fitzgerald (2011) states that, “This link between genius and psychiatric disorder has been made for thousands of years. Indeed, there has been almost equal interest in the relationship between genius and madness, and between genius and creativity” (p. 213).  Neurodiversity presents a paradigm in which mental illness are not considered as such, but are instead a result of a specific neurological wiring. The first person to claim the term Neurodiversity was Judy Singer, an autistic activist and sociologist diagnosed with Asperger Syndrome. Singer argued that being differently wired deserved to be an addiction to the political categories that society holds such as those of class, gender and race (Singer, 1999). The paradigm of Neurodiversity defines all the non-typical neurological development as a human imprint that should be recognized. Instead of fighting and creating fear towards varieties, this paradigm provides an opportunity to understand what it is to be uniquely human and the limitless creativity that can be encountered.

Later on, curiosity led me into queer studies, specifically within the transgender spectrum in which I focused on a lot of photography as a medium for documentation and exploration. So here I was, with a feeling of great interest yet total disappointment. I hated myself for not being autistic, or “normal.” What was this about? As I paced, faster and fasted I finally hit a Stop sign that read, INDIVIDUALIZE. As a bipolar gender non-happy person I felt like I did not fit anywhere. I did not understand nor identified with the transgender umbrella either, and I did not fit in the Neurodiversity paradigm because I felt that being bipolar did not necessarily identified and included my entire self.

I felt I had given up, but by inertia, I continued exploring my curiosity digesting two books that have shaped this photo series and allowed me to further explore the gender sphere. These also allowed me to understand solidarity and inclusion, understanding that if this work is just for me it has no power, and I do not do this to only find a place for myself, but to liberate human beings from the personality definitions that are established by a society that wants to dominate people and control. This is work is for all individuals wanting to explore their authentic self.

Leslie Feinberg’s Trans Liberation presented me with very interesting perspectives, in which I found great solidarity between trans people and non-trans people uniting in order to demystify, decolonize and mobilize. Feinberg’s book begins like this, “The sight of pink-blue gender-coded infant outfits may grate your nerves. Or you may be a woman or a man who feels at home in those categories. Trans liberation defends you both.” The healing aspect of conferences, gatherings, coming together to share stories and experiences provided solid ground and strength for individuals all over the U. S to explore and represent their identity. I appreciated how Feinberg allowed the individuals to express themselves and tell their own stories.

Mariette Pathy Allen’s The Gender Frontier allowed me to see the importance and raw essence of the documentation of the trans movement through photography. The way time is held and moments are kept seemed so essential to me, specially as a visual learner. I was so moved by the narrative and inclusion of the subjects, that I see this work as radical documentation. Allen is not transgender herself, and I admire her humility, respect and desire to observe as an ally and human in this world.  Allen’s work brings us face-to-face with just how much gender roles define who and what we are and can be, and what kinds of personhood are allowed on the grid of social viability. Her latest interest has been in youth, and I also see the freshness of this. The youth is revolutionary in many ways, you can see it now with how non-conforming they are even within the trans umbrella. Allen states in her introduction, “ Sometimes, when I am with transgender people, I am afraid: I lose track of who I am or what attracts me. That fear usually turns into exhilaration when I see the old stereotypes rebuffed and outdated conventions overturned.” I appreciate this awareness of human conditioning and challenging it as it inevitable happens.  

Since I can remember, I have had a fascination with madness, probably due to the fact that I have always felt insane, and sometimes even mentally ill. I believe it has not been insanity which has lead me the darkest moments and most self-loathing aspects of the self, but it has been the times I have claimed myself as mentally ill that I feel no hope. I now see a connection between my curiosity in distortion, surrealism, dada and futurism, are my avenues to understand and live the human collective experience of madness. But I realize that my environment, specially the medical/APA part of my existence has used the Diagnostic and Statistical Manual of Mental Disorders (DSM I-V) as a way to explore this concept of human “insanity/identity.”

Thomas Szasz wrote a book in 1987 by the title of Insanity. It begins with a quote by Charles S. Piece, reciting, “ What a thing means is simple what habits it involves… there is no distinction of meaning so fine as to consist in anything but a possible difference of practice.” The idea of insanity pervades every aspect of our daily lives. Instead of any mental illness being like any other illness, Szasz contends that the term actually functions as a euphemism for problems in living, as an excuse for crime and misbehavior, as a stigma for invalidating adversaries and, as a metaphor and legal fiction.

Now, in the year 2013 Sam Kriss wrote an article called Book of Lamentations. In this article he presents the DSM as a dystopian novel, in a classic mode in which the DSM takes form as a dictionary of madness. Kriss describes how some of the best dystopian literature, such as Orwell’s 1984 and Huxley’s Brave New World, manages to show us a hideous and contorted future while resisting the temptation to point fingers and invent villains. Kriss also uses Jose Luis Borges’ Celestial Emporium of Benevolent Knowledge as a comparison, stating, “just as Borges’s system groups animals by seemingly aleatory characteristics entirely divorced from their actual biological attributes, DSM-5 arranges its various strains of madness solely in terms of the behaviors exhibited. This is a recurring theme in the novel, while any consideration of the mind itself is entirely absent. In its place we’re given diagnoses such as “frotteurism,” “oppositional defiant disorder,” and “caffeine intoxication disorder.” That said, these classifications aren’t arranged at random; rather, they follow a stately progression comparable to that of Dante’s Divine Comedy, rising from the infernal pit of the body and its weaknesses (intellectual disabilities, motor tics) through our purgatorial interactions with the outside world (tobacco use, erectile dysfunction, kleptomania) and finally arriving in the limpid-blue heavens of our libidinal selves (delirium, personality disorders, sexual fetishism). It’s unusual, and at times frustrating in its postmodern knowingness, but what is being told is first and foremost a story.”

III. The Wrap Up
As neurotransmitters find connections, shooting information from neuron to neuron, I have connected this research and found and umbrella known as NeuroQueer. Neuroqueerness is a term originally coined and developed by Nick Walker, Elizabeth J. Grace of National Louis University and Autistic author Michael Scott Monje, Jr. This paradigm allows for the extraction of Gender Dysphoria out of the DSM-5, away from the umbrella of mental illness into a liberatory theology for all beings. Why should anyone be conditioned to follow a gender role? I want to state that this has nothing to do with sexual preference or sexuality; it has to do with self- expression and individuality. In this pursuit of creating and living in a world where many worlds exist, I present this photo series as a first stepping stone of my work and interested in neuro-anatomy, self and gender.

I am to use this project as a portfolio and research skeleton. My upcoming plans include travelling to Pucallpa, Peru to study and work next to an indigenous community known as the Shipibo. The Shipibo see identity and individuals as patterns, and their gender sphere expands the modern world. This project has shown me how to begin to look at people as they see themselves, and also to take the time to listen. I am also considering pursuing an MFA in photo documentation.

From a neurominority and neuroqueerness perspective, I present myself to you today as an animal, a rooster, and I thank you kindly for your time and attention.

[Here is the link to the photo series.] 

[Here is a pic of the author, young, strawberry blond, at a classically set table, complete with white cloth, where the gilt-framed art behind reflects a chandelier. The original caption said "Extranando a la Betty" ("Missing Betty") and Rooster's pensive expression illustrates this feeling in a way that calls to the heart.]


-S. Rooster Canessa


American Psychiatric Association. (2013). Diagnostic and Statistical Manual of     Mental Disorders (5th ed., text rev.). Washington, DC: Author.
Allen, M.P. (2001.) The Gender Frontier. Germany: Kehrerver.
Bishop, B. (2003, November). A Glimpse of the Psyche. Positive Health, 82, 13.

Feinberg, L. (1998.) TransLiberation. Boston: Beacon Press.
Fitzgerald, M. (2011). Creativity Psychosis Autism and the Social Brain. In M. R.
    Mohammadi (Ed.), A Comprehensive Book on Autism Spectrum Disorders (pp.
    213-224). Croatia: InTech Europe.

Kriss, S. (2013, October). Book of Lamentations. Retrieved from           
Singer, J. (1999). Why can’t you be normal for once in your life? From a ‘problem with     no name’ to the emergence of a new category of difference. In M. Corker, & S.     French (Eds), Disability discourse (pp. 59–67). Buckingham: Open UP.
Szasz, T. (1987.) Insanity. Canada: John Wiley & Sons, Inc.