The Feminist Wire, I'd Like A Word.

This is an essay that has to do with the social media crisis described here in this post on Yes, That Too.

By the time you get to this, you may already have read the above post, but to make a long story short, The Feminist Wire put forth a Call for Papers which on the face of it appeared to invite people with disabilities to the table to talk about disability issues with them in a forum.  Unfortunately, the call was written in such a way that many of us neurodivergent types had a great deal of trouble trying to work out what it actually said, or was asking for, or how, or anything much else about it.  Alyssa, who is the writer of Yes, That Too, and many others, asked them to rewrite it so we could access the information contained in the call.  (I also asked them something else very important and left unaddressed, but I think I'll put that problem as something to work on into the forum itself, if I can access it.)

They do seem to have tried to rewrite it, but not to much avail. It's almost the same as it was before.  But. The trouble really began when Alyssa received this:

Dear Alyssa,

We appreciate your feedback and comments.  We've discussed the concerns, and rather than rewriting the CFP again, or creating multiple versions, we invite you (and others) to share your own interpretation of the CFP with your communities.  This seems to us the most reasonable and helpful way to proceed.

Best wishes,
Editorial Collective

Dear The Feminist Wire, I was on your side in a sort of way, just a little tiny bit, before I heard this, and I'll tell you why and how in a minute, because what I think about that part still holds true.  But I really do have to address what is wrong with this picture.

Last night Layenie couldn't open this dang jump drive before I took my saw-toothed pocket knife to it, and we remembered the funniest thing, and she and I were telling her mother this thing and laughing ourselves silly.  Around Christmastime on our way out of The Container Store we saw this Ingenious Gadget! You know that hard, fused-together plastic form packaging that cannot be breached come hell or high water and you always hurt yourself trying?  Well, here was a device that sliced right through it.  Zip, like butter.  Packaged in that hard, fused-together plastic form packaging that cannot be breached come hell or high water and you always hurt yourself trying! Layenie recounted the part where she'd said to me at the time, "Genius thingy! How d'y'spose you'd get it outta there to use it?" and her Mum said: "Get another one!" and we fell all over ourselves laughing some more.

[Visual image: photograph of the ingenious "Open X" device in its triumph-of-irony impossible-to-open packaging, which depicts a woman trying to open such a thing with her teeth as the words STOP STRUGGLING fly over her head.]

Open the gate! I cannot get in!

Well, why don't you just come on in and tell me all about it.  Then we'll see about opening that gate for you.

See the problem?

You probably do, now, because I told you the story in a way that was likely cognitively accessible to you. But I really believe it is possible that you were unable to access the request properly before because you did not know what it meant, and perhaps do not know how to write plainly because it had been beaten out of you by the system.  I'll get back to that in a minute, because it relates to this: I'm also willing to believe that it could not possibly have occurred to you to say something like, "We have no idea how to do what you are saying, or even really what you are talking about," because the dominant culture of academia has bashed that out of you too; if academics were to go around saying things like this to who all ever, the structure would crumble.  It's not like there's jobs lying around, seriously.

Although I know there's a chance I am hurting your feelings with this, I promise that is not what I am trying to do.  I am trying to explain a problem that I don't think is well enough understood because it is difficult to locate where there could be a place to put yourself in a position to see it clearly.  If you have spent enough time in academia to be bashed into knowing (even if you have not taken the sociolinguistic turn such that you have self-reflective meta-knowledge about it) that you must use particular kinds of jargon to mark yourself as an insider with a place at the table, then there you are.  You are at that table and I guess you're stuck, from the sound of it.  Your voice has changed, and if you think about it out loud, it will hurt, which is well expressed by this guy here to whom I'm linking.  (Newtown may have forgotten him, but my town is delighted to have him!)

I'm going to get to the glorious solution of the I-Don't-Know in a minute.  I don't like to write about problems without at least having thought about some of the fixes.  I have been told I don't always have to fix things, and sometimes people just want to be heard, hehe, but since I'm the one talking now, I can feel free to do my characteristic fixating on fixes.

But first, one more important theoretical thing about why I'm kind of on your side, and also why you probably don't know what it means even to write in accessible language, let alone being able actually to accomplish it.

The ideals of academic jargon to which you have been enculturated were designed for gatekeeping against unspecified non-elites: you were trained to lock out those who didn't fit into the "meritocracy" of an aristocratic, leisured yar yar yar-- you actually know all this now that you are thinking about it so I'll move on.  It's a classist, elitist thing writ large, very large, without fine detail, and you yourselves individually probably do not believe you fit in to the elite so you worked your ass off to talk like that and sweat every single day how much you can keep up depending on where you are in the hierarchy.  The fact that this wall of language turns out also to be inaccessible to many neurodivergent types of disabled people is just a side effect, and I mean I don't even think it even rises to the level of being an afterthought.  So we came at you out of left field.  You don't even know what we're talking about.

But that would have been a really excellent response.

And you could have said, do you know anyone at all who can both gain access to what we have written and write in whatever you mean by accessible language? Because we do not know how to do it.  The reason we are not doing it is because we do not know how, or even really what you are talking about.  And you would have sounded very respectful, and what you said would not have been absurd and insulting.  And the response would have been wildly different.

Academia beats the possibility of this response out of us, just as it beats out of us our mother tongues.

But we can Occupy Academia; we can stand against oppression and when we find it in ourselves respond with the truth even if it is very risky.

I am saying "we" to you now.  Do you feel me?  You can still say other things that are not the things you said before, because lived life moves fluidly.  We are not only one of our enculturations.  We can choose.  We can choose to choose together if the gates are flung wide open.

Love,
Ib

Alyssa of Yes, That Too is NeuroQueer

And what needs to be said, she gets said:

Like this, for example, which everyone must click right here and read.

In fact, read the whole dang blog while you're there. You'll be glad you did.

Also, she makes these Because Patterns.

Rock on, Alyssa.

Love,
Ib

Zach Richter: Ginsberg’s Howl as Neuro-Queer manifesto: The Sphinx, Rockland and “the worm of the senses”

Ginsberg’s Howl as Neuro-Queer manifesto: The Sphinx, Rockland and “the worm of the senses”

            In Part II of his masterpiece poem Howl, the great queer mad bohemian poet Allen Ginsberg asks us “What sphinx of cement and aluminum bashed open their skulls and ate up their brains and imagination?” (7). Many readers still ask, “What sphinx…?” But the sphinx conceals itself rather poorly. In the ancient Greek mythological tale of Oedipus, many of us can remember the sphinx distinctly as a creature whose main job constituted the asking of difficult question and the killing of those who answered it wrong (Daly, 2009). The main question the Sphinx is reputed to ask is What goes on four feet, on two feet, and three, But the more feet it goes on, the weaker it be? (Daly, 2009)”

            A queer and disabled reading of the Sphinx is in fact rather obvious; the Sphinx is an asker of a question which determines whether the answerer’s life will be peaceful or will contain arbitrary violence. Similarly, both those who are queer and have neurological differences are regularly asked questions which determine their fate. “Are you of sane mind?” “Are you okay?” “Are you married?” “Do you have a boyfriend?” Queerness and neurodivergence are inherently unstable identities. Many walk around with those identities as a secret. The closet contains people with both deviant sexual desires and people with alternative neurologies. For these groups, the “correct” answer to the multitude of moments of seemingly simple questioning determines our fate.

            The question asked by the sphinx in mythology is inherently about the physical form that a human takes, considering that the question focuses on that human being’s number of legs. The way one walks is an inherently performative attribute; not all babies, adults and elderly people follow the Sphinx’ above guidelines. Certainly many babies are able at one time to walk on two legs, many adults do use a cane or a wheel chair and many elderly folk may be in either a wheel chair or be capable of walking on two legs. The sphinx, in Ginsberg’s poem, is made of cement and aluminum. These substances are known mainly for their intractability. While aluminum is physically weak, its color is grey-silver, making it a colorless void.

            What Ginsberg describes in his second part of Howl is an experience inhabited uniquely by neuro-queer individuals, something I would like to call the “anxiety and despair of identification”. For our communities, the majority of the social world is not made in our image. We must constantly “break our backs lifting Moloch to heaven” or put extreme effort into a livable optimism about daily life, that in its course, isolates us from our true identities. Moloch here is a variant of the Sphinx; it is the name of a large ancient mythological body that commits arbitrary violence. Moloch in fact is the name of a deity mentioned in Hebrew mythology as an eater of children.  The Moloch/Sphinx that Ginsberg imagines is described through terrifying institutions. In lines like “Moloch the cross-bone soulless jailhouse and congress of sorrows” and “Moloch whose fate is a cloud of sexless hydrogen”, Moloch is invoked as both industrial and governmental, as a great edifice that we are within and surrounded by. Moloch is also described as a destroyer of sexuality by Ginsberg. One can then understand that for Ginsberg, who goes on in great detail in the next verse about a madhouse called Rockland, Moloch is the name of the combined force of ableism and heteronormativity which deprives people of their twin life forces of creative and sexual passion.

            Allen Ginsberg’s identity is important here: Allen was both an open homosexual as well as a neurodivergent whose mother was assuredly neurodivergent and who was locked in mental hospitals for various periods of his life. Allen serves as a powerful role-model for young neuro-queers who seek happiness. Ginsberg became a center of the counter cultural movements of the 1950s to 70s and was an amazing poet, a spiritual Buddhist and a political activist.

            I believe Ginsberg’s identity is represented well in Howl. His demons which are both the institutional devourers of passions and the authoritative askers of questions who freeze us in a position of repression or self-denial are my demons, as a bisexual autistic.

            In part 3 of Howl, I believe Allen extends a hand to me and to our community through repeating the slogan “I’m with you in Rockland” in an extended echolaliac poetic outburst. What is Rockland and who is Allen with? Rockland was a mental hospital in up-state New York within which Allen was incarcerated and Carl Solomon was the main voice that Allen expressed cohabitation with. Rockland was likely the prison of both people who were queer (because alternative sexuality was pathologized as a mental disorder in the time that Howl was written) and the prison of people who were neurodivergent or so-called “mad”. The statement “I’m with you in Rockland” rings with a meaning that disability justice blogger Mia Mingus describes as “access intimacy”.  Mingus offers two excellent sentences which define “access intimacy”.  Mingus says that Access Intimacy is A. “that elusive, hard to describe feeling when someone else “gets” your access needs” and B. “the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives”. I believe that Ginsberg specifically planted these sentiments in his poem to inspire future generations of neuro-queers to fellowship. In lines like “I’m with you in Rockland, where fifty more shocks will never return your soul to its body again from its pilgrimage to the cross in the void” and “I’m with you in Rockland, in my dreams you from a sea-journey on the highway across America in tears to the door of my cottage in the Western night”, one observes Ginsberg’s instant recognition of Carl Solomon’s access needs of liberation from Rockland and less electro-shock therapy. In other lines like “I'm with you in Rockland, where there are twentyfivethousand mad comrades all together singing the final stanzas of The Internationale” and “I’m with you in Rockland, where we hug and kiss the United States under the bed sheets the United States that coughs all night and won’t let us sleep”, one can witness Ginsberg’s activist and sometimes more intimate fellowship with his fellow neurodivergent individuals, the first of whom being Carl Solomon.

            Ginsberg’s access intimacy is an amazing literary moment to observe; community and solidarity are formed right before the reader’s eyes. I think it is useful for overly literal and biographical readers to note that Solomon is only mentioned once in the last verse, leaving the person addressed as possibly being all neuro-queer individuals for most of that section of the poem. Furthermore I would like to highlight one last verse of Ginsberg’s as being one that transcends the taxonomizing and classifying compulsions in psychiatry and heteronormativity. Ginsberg states that “faculties of the skull” no longer admit “the worm of the senses” (9).  I’d like to state that neuro-queerness would properly house the worm of the senses as an essential part of what neuro-queer means. Ginsberg’s “worm of the senses” seems to refer to a world of alternate sensation that is not present in the medical world whose focus is on the head. In poetry, in free-writing, in philosophy, in so many other areas, that worm of alternate sensation crawls across our experience and spins a silken rope ladder for us that escapes the locked binarisms and universalisms that characterize normative science and practice.

I dedicate this post to that worm; it is that worm which has awaken me from my deep self-loathing and self-denial.

Works Cited:

Daly, Kathleen N. Greek and Roman Mythology A to Z, Third Edition. Chelsea House, New York, NY. 2009.

Ginsberg, Allen. Howl. City Lights, 1956.

Mingus, Mia. “Access Intimacy: The Missing Link” 2011. http://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/

Sibley, Kassiane---for coining the word “neurodivergent”

Guest Post by DYMPHNA: NeuroQueer: A Perspective on Queerness, Transgenderness, and Ableism from a Queer, Nonbinary Autistic with Severe Clinical Depression [1]

NeuroQueer: A Perspective on Queerness, Transgenderness, and Ableism from a Queer, Nonbinary Autistic with Severe Clinical Depression [1]

by DYMPHNA

In the wake of Private First Class Chelsea Manning coming out as a trans* woman, many people in trying to be an ally to trans* women have posted things that people should do or avoid doing to ensure that they are not reinforcing anti-trans* bigotry and transmisogyny in particular.  This is, as we like to say in the Business, a Good Thing.  I am glad that people are getting on top of fighting anti-trans* bigotry as a person who falls under the trans* umbrella.

However, there is one thing that I find somewhat disturbing.  One thing that people keep writing is that we should not conflate Pfc. Manning’s trans*ness with mental illness.  I understand what they are trying to say.  They are trying to say that we should recognize that Pfc. Manning’s gender identity and not use the label of “mental illness” to invalidate her identity.  Pfc. Manning knows who she is and knows that she is a woman and saying that she only feels that way because she is “mentally ill” is dismissive of her gender.

Does anyone know who made this? Please help me credit the artist. -Ib

However, here is where the problem comes in.  The way that people assert this is to say, “Chelsea Manning is not mentally ill; she’s perfectly fine; there’s nothing wrong with her.”  That statement, which I am sure some people have read without a second glance, is really telling.  Pfc. Manning’s prospective mental illness is contrasted with normality, health, and, most importantly, clear thinking.  Does that mean that, if she did have a mental illness, that her gender identity would be invalid?  Is my feeling non-binary a result of my being Autistic or having severe depression?  Is my friend who has Borderline Personality Disorder only a trans* woman because of her diagnosis?  Do my many Autistic trans* friends (I can only think of one trans* friend who I am convinced is allistic) owe their diagnosis to their neurology?  Now some of you are thinking, “Of course not!  Who would say that?”  Unfortunately, the truth is that a lot of people say that.  It’s actually a very common dismissal technique.  So by insisting that queer or trans* people are not mentally ill, I wonder if you are really helping those of us who are queer/trans* and have mental health disabilities.

Moreover, I question whether that characterization is, strictly speaking, accurate.  Now, before everyone gets all worked up, I’m not saying that queerness or trans*ness are invalid; I’m examining what we really mean when we say “queer”, “trans*”, and “mentally ill”.  I have been fighting my instinct since the beginning of this blog post: I almost never say “mentally ill”, preferring rather to say “mental health disability”.  “Mental illness” is a disability by nearly every definition and societal test.  “Mental illnesses” or mental health disabilities are (theoretically) covered under the Americans with Disabilities Act.  People with mental health disabilities can receive Social Security Disability Income if their mental health disability is such that they cannot be gainfully employed.  However, the most important test is what fancy pants people who write fancy pants papers call “the Social Model of Disability” [1].

The social model was created in contrast to the medical model of disability.  The medical model claims that people with disabilities have “incorrect” or “inferior” bodies or brains which must be “corrected” so that they can live a “full” life.  In contrast to this, the social model claims that a disability is the non-congruence between society’s accommodations and an individual.  The difference here is that both the individual and society are things that can be altered.  In a truly accessible world, the individual would not be disabled; likewise, in a world wherein most people have different sets of abilities, those who are typical and abled in this world might not be in the other world.

“Okay, so that’s all nice and cerebral, but in the real world people obviously have deficits, unless you mean to tell me that blind people would be able to see if everyone were blind.”

Of course that’s not what I mean; that would be asinine.  However, in a world where everyone was blind, there would be no need for transparent windows or interior lights.  Most blind people have exceptional auditory processing, tactile processing, and spatial intelligence because the areas of the cerebrum that were concerned with processing this constant stream of visible light are reallocated to other processes.  Blind people also have a higher incidence of absolute pitch than the general population.  So a sighted person visiting this Blind World would have a great deal of difficulty as the society would be equipped for blind people.

Relating this back to queerness and trans*ness, both can be framed in the concept of a social model disability.  The distress the queer and trans* people face largely comes from a world that is unaccepting of our sexualities or gender identities/expressions.  Even gender dysphoria can be attributed to the fact that there are not available, affordable, or satisfactory surgeries and treatments to allow people to bring their bodies into consonance with their self-conception.  While we should not use the label of mental health disabilities to be cissexist and heterosexist and dismiss someone’s sexuality and gender identity/expression, we should likewise not conflate mental health disabilities with the inability to accurately assess oneself and we should examine the ways in which queerness and trans*ness both operate like disabilities, as that will enable us to fully understand the mechanism by which these oppressive structures work.

That’s why I call myself NeuroQueer.  To me, being neurologically atypical and being queer are one in the same.  They share many similar tropes and their oppressions operate on many similar channels.

[1] For those wanting my queer, trans*, and disabled credentials, I identify as androgynosexual, Kinsey Scale 1.5, demisexual grey-asexual, Androgynous/Genderqueer, Autistic, and depressed.

[2] Although I have written fancy pant papers, I’m presently wearing gym shorts.

Nick Walker is neuroqueer

... and here linked is his magnificent article entitled Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm.  An absolute must-read.

I wouldn't leave you alone waiting for the next installment; I bring you the best! Of the best! 

Love, Ib

What I Mean & Why, Part 2a (Neuro, lead-in) by Ib Grace

Thanks to Cassandra on Twitter, I have this graphic to show some of the ace style ways of being queer in more detail, relating them to the Asexual Spectrum:

Huffington Post via AVENwiki, which I got via @CassandraB on Twitter.

But you can also note when looking at this that while the disclaimer says not all asexuals will identify with it, it also does include in the dotted lines, all sorts of people such as a sexual aromantic person, whom I would guess goes in for one night stands, unspecified gender attraction.  I have always liked the idea of homoromantic, thinking that my romantic love was more important than sex. I like chivalry.  I'm glad people started really using this concept and making it a Thing.  Not that I am not sex positive.

But another thing. Just because I am sex positive does not mean I think I am the sex police, and being sex positive does not mean I get to say everyone wants to have sex because that is part of the human condition.  What do I know about the human condition? I know about my own, and those of the people I listen to. So I should listen. That is my point here.  People have their own humanities and human conditions and ways to selve.

Here is another graphic provided to me by Corbett O'Toole which is inclusive of different divergences:

by Marillyn Anjos Agnoletto for AVEN

This one is more indicative of the ways people I know talk about asexuality, and includes fetishes, porn and self-love, as well as poly and pan, which reject gender binaries, going into more detail on that.

What are not on these particular graphics are ways to be trans*

Trans* is a way to be Queer.  I don't have a graphic of this, but please feel free to send them in, or better yet, Trans* folk, be a guest writer for this blog!

Trans* people can have any orientation there is.  So can genderqueer.  So here is my point and why I am still talking about queerness per se in the lead-up to how I am talking about the Neuro part of NeuroQueer:

The flagship way of being queer or sort of the inaugural way, or posterchild way, or whatever you want to call it, is to be gay or lesbian, and I am this, which gives me privilege of a relative sort.  It gives me the kind of privilege to where I could have chosen (if I were that kind of unfortunate person) to be one of these unctuous HRC slimeballs who thought it necessary to throw everyone else under the bus to assimilate, as if we never learned anything from Harvey Milk, may he rest in peace, even knowing this was done, may we reverse it and learn from it and stop doing this wrongness.

Because I will never use my privilege to be like that, and if I see my friends accidentally doing it, I will say, hey friends, you are accidentally doing a thing that is probably not what you meant to be doing, because this is what it is.  If you are at the top of the everloving ladder you do not kick that ladder down, you gather the people like you who have the muscle and luck that is relative privilege and you cement that ladder there, fortify it with some rebar, get the architects in and make it wider, that's what you do. You make it permanent, a fixture, safer and bigger.  With handlebars.  You draw plans for the elevator right away, a big giant elevator that creates jobs and leaves behind nobody.  That is what you do.

The Neurodiversity movement was invented because of Autistics, and the inaugural flagship posterchild whatever way of being neurodivergent is by being Autistic.  I am Autistic.  So get ready because I am going to go into more detailed detail about ways of being Neurodivergent historically and with a wide range, and I'm going to say why this is important, and I'm going to talk about coalition and handlebars and elevators and the whole lot of it, with a fiery passion.  You may be surprised by who counts as neurominorities according to me, and what I think follows from that but I'm nothing if not willing to explain myself and take my lumps and try again if my explanation isn't good enough.

Thanks for listening,
Love,
Ib

Amy Sequenzia is NeuroQueer

...and has started a new website collecting her writings together.  This is Awesome:

Amy Sequenzia

http://nonspeakingautisticspeaking.blogspot.com/

Love,
Ib

I have Autism and I’m Not Afraid to use it, by Selene DePackh (Asp in the Garden)

Not long ago, some autism advocates created the “Not Afraid” campaign for solidarity and acceptance. We were to take “selfies” holding up a sign declaring ourselves as autistic or ally, and unafraid. The image I made was of myself at my powerful graphics computer; the monitor displayed the words “I have Autism and I’m Not Afraid to use it.” I didn’t follow the instructions precisely; I had my own message. I believe the phrase is original to me, although I’ve seen it picked up here and there since then.

I’ve never been good about following instructions precisely. The crap poured on me (not by anyone who actually worked on the project, btw) for daring to publicly declare my possession of my neural wiring pattern instead of being identified by it had unpleasant echoes. Thought police come in every stripe. I’ve stood up as a makeup-wearing dom bisexual against gender warriors who took it on themselves to dictate naturalwomyn-only reciprocity in everything including my bedroom. Before that I stood up against family members who used their own forms of violence and coercion. I’ve stood up for my identity against self- and societally-appointed authorities all my life.

I’ve paid my dues on the right to assert that everyone is entitled to his or her words; I’ve worked with sister- and brother-abuse survivors until I burned out from it. It was a burnout well-earned, and although I’d never repeat those years of service in the trenches, I treasure the lessons learned. I grew up in an abusive household; because I’d never had the chance to know better, I married into one. I barely survived, but emerged understanding one thing clearly: those who claim the right to control your language will never be satisfied. It’s not about the language, it’s about the control. Words are the cracks in their walls where the light of independent thought comes in. They defend their crumbling citadels, however meager and pathetic, with the cruelest of weapons: they declare that you are hurting everything you love by failing to follow their dictates. One must obey or be responsible for the damage done by The Common Enemy. It can be the enemy of a family, a sex, a gender orientation, a neurological condition, or a state.

This is an oppressor’s tool; martinets integrate it well when they insist they’re victims. They often are. Pain is passed on in an unending chain; the weapon, the wound, and the spirit become fused. The most effective manipulators drown you in shared injury that they insist on an exclusive right to define, while denying the validity of  your divergent experience. They can’t bear that you have any place in yourself that belongs to you alone; the affront is even crueler if you dare to speak of that space in your own voice.

I choose when I [have] autism (object of mine)—when I use it as a tool of rigorous, self-disciplined thought, and when I [am] autistic (subject to autism)—being in myself, stimming, mesmerized by a tiny thing encompassing universes, flooding with ideas. Both are conditions necessary to my being. They may be concurrent, or not. Would-be despots may say what they like; I equally may ignore it. I use my intellectual machinery to combat the Will to Control wherever I find it. No one has the right to deprive me of that. It’s mine; I’ve fought for it through some dark places. Trust me—I’m not afraid to use it.

Asp in the Garden

neuro-queer, or, how the birth of the clinic met my dangerous desires - by Elizabeth Hassler

Like my best crip friends

I love wordplay, and here

I am playing; tumbling the

new queer thoughts

around my head until

they get smooth

and reflective of my body---

neuro-queer. I worry

my flesh intrudes on your discourse

(my body is many things,

but it is not autistic

---of course, I remember

when autism felt like a threat

and a warning not to stim).

My body arches, grasps desires unevenly and

without finesse,

drives electric wheelchairs

into doorways. It writes poems because

line / breaks make queer ideas fit together,

not all queer ideas all together of course

but certainly mine. Nothing

about my flesh is linear.

Here are meditations on the form

(Ibby has been kind and encouraged

my disagreements

and my coy shield):

my queerness is in lower-case,

and I came to it easily

once I stopped tasting my experience in rights-based alphabet soup.

I fled

toward radical corners,

toward people who didn't tell tell tell me

my body was too wrong.

The wrong kind of disabled: no,

I can't prove I'm good enough

and clean enough

to be an inspiration.

The wrong kind

of queer

because ditto.

[Here is the part

of the essay that is a poem

that is an essay where

all the thoughts happened all together and I got

stuck in the writing.] Growing up,

disability meant Easters Seals camp

and wheelchair basketball [badly] and riding the short bus [but never

the “Shortbus,” kids!] and

never saying the word can't.

The only depressive crip I knew

was a woman

who had acquired her disability jumping

out of a fourth-story window in winter

decades earlier. When I was fifteen

she relayed her romantic frustrations and

attempted to sell me on disabled lesbian sisterhood

---but then,

I've never been a lesbian.

One of my childhood friends with lesbian parents

went crazy in her teens:

her mothers visited

to catch up and tell the story of her psychosis,

how she lived in a locked facility in a midwestern state.

They didn't expect me to know what Seroquel was.

Afterward, one of her mothers

(the one with the beach hat and the

masculine features) whispered to me conspiratorially

about sometimes liking men.

I never wrote her letters in lock-up

or saw those women again.

I grew up with disability

and craziness

separated by an ocean

of discourse about bodies:

wheelchair users are strong and independent

and wear superhero capes.

For a few years of high school,

my best school friend was a “biffer” jock

who goaded me into good moods

[don't try this with suicidal teenagers at home].

One time a therapist tried to convince me

I resented my wheelchair, but

I've never wanted to walk.

I wanted an etiology

for my body,

reasons household noises drove me to tears while

happiness felt so hard to grab hold of

and no less dangerous.

I brought Ordinary People into

my first therapist's waiting room.

I read blogs written by parents of disabled kids

to convince myself I wasn't a terrible daughter

and to find a language for my body

(autistic bodies

seemed a lot like mine).

I failed classes in school

while depressed friends kept me alive.

I never pretended I had

a nondisabled body., online

or in my head. But I knew

the disability rights community was never mine---

I still won't read

books of disability history that insist WE

on their covers. I never

made sense of my life

in cultural nationalisms,

and so I shy away from Queer.

But I am queer, nonetheless, even though our movement politics

are so white and so middle-class and

imagined so exclusively on dance floors

and crowded meeting rooms that I

sometimes flee in fits of overstimulation

[critiques the white girl whose parents are lawyers].

And I am, of course, disabled.

Crazy (which some people who call themselves queer

have told me not to reclaim)

seems less distant from disability now.

[Still, my poor mother---

every girl her age read Karen,

but there's no moralist classic about

raising a bipolar daughter.]

And this never was

independent living.

When The Advocate publishes op-eds about

obstacles lesbians with disabilities must overcome,

I wish this was a different revolution.

Of course, I'm not a liberal

or a lesbian,

but I want revolution more than progress

and I crave community with lesbians

who don't conflate trans* lives with child abuse

or delusion

and tell me to want different things in bed.

[Dear reader, the Sex

Wars never ended.]  I want to be a radical

before the patriarchy ends.

My body keeps

disability and desire all stitched together

in my disabled skin

---I've told rooms full of people

how my needs and my wants never separate themselves.

How many DSM entries does a girl need

before she's neuro-queer?

In my life queer is a verb,

and it means queer acts:

mine happen without candor or privacy,

and I have a body in plain sight.

There are silences here,

and if this were an academic paper

this would be the Spivak citation (I don't dance but I

read academic theory,  and when I am a sub

-altern I do not speak). My neuro-queer

is in the silences, in the coy,

in coastal metaphors, in the third person,

in building her a life

and tides of disabled pleasures.

Ashley X

has cerebral palsy too;

my queer girl-girl-grrrrrlhood

remembers discursive gaps.

Some days there is no womanhood here,

but that feels right to my mouth.

I am neuro-queer, and neuro-femme:

cologne smells like a phantom boyfriend's clothes.

I still hold shame

about the boyfriend from a year ago,

not hir behavior but how I nearly got sucked in

because I thought that was the right discourse for femmes and I

thought we had equivalent needs.

I'm glad, now,

that there are other tricks

to feeling like a girl.

I didn't value my desires

as conduits for revolution, not even when

I could tell the story

of not doing that again.

The structure of my needs

has always shaped the shames

and the resistance of my body; no,

I won't please stand. I won't

pretend the shames fade, either,

not today not for this poem.

I feel the shame intensely,

hence a sweet release

of this stiff form:

I am a crazy crippled girl

with desires,

and I am learning

to access intimacy and that neuro-queer

has so much potential for joy.

My body needs a here and now

[an abject here and now]

more than a future,

and neuro-queer's remembering

the things our bodies need.

--Elizabeth Hassler