Tuesday, February 25, 2014

She Who Lives With the Lions And Has Her Own Things, by Barbara Ruth

Ntozake Shange, Black feminist poet, novelist, essayist and author of “For Colored Girls Who Have Considered Suicide/When the Rainbow Is Enuf,” turned 65 last fall. She’s still writing, but she has a hard time with spell-check. Hey, we’ve all been done in by spell-check and auto-correct at some point, right? Happens to me all the time.

Except, that’s a gross exaggeration. It happens to me now and then. And my fingers, though arthritic, can easily go back and fix. I rule, spell-check, this is my writing, my computer, and the words are going to come out the way I want them to.

It’s vastly different for Ntozake. She writes in Black vernacular, sometimes flavored with Nuyorican accents. And auto-correct just doesn’t come in flavors other than vanilla.

So, why doesn’t she do what I do? Just fix it, Ntozake, go through the manuscript and discorrect the auto-correct. To hell with spell-check; just disable the damn thing.

The thing is, neurological disorders have disabled Ntozake, severely. First a series of strokes, then Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), which keep her hands and feet in constant tremor. She can no longer type or write by hand.

Like many disabled people she uses voice recognition software. And that’s her battleground.

Is this a Disease of the Month movie about a famous person? Not for me.

I know the territory of strokes, epilepsy. I’d never heard of CIDP before I read about her choreo-essay “Lost In Language and Space.” In it she says, “I can’t count the times I viscerally wanted to attack, deform and main the language I was taught to hate myself in, the language that perpetuates the notion that causes pain to every black child.” Before CIDP struck her a few years ago Ntozake already had bi-polar disorder, but that’s not so uncommon among the artists of the world, and who says disabilities get doled out one per customer? Like Ntozake, I had a season in hell when I could not read, approximately the same time she did, 2010/2011.

I speak standard English. Which is to say: standard, middle to upper-middle class white mid-Atlantic inflected American English. I know it’s rules of grammar. Ntozake does too; she graduated cum laude from Barnard, has a Masters in American Studies from UCLA.

Most of the characters living in my head speak the same kind of English as I do. But a sizable minority do not. I have written characters of many shades and generations in a novel set in New Orleans in the fifties and sixties. I am now working on a book where many of the characters’ first language is Tagalog. I only know a few words of Tagalog, and the characters speak in English, as did the Filipinas they’re based on, when they were talking to me. There are also Somalis, Latinos, and Tongans in this particular story. A lot to train my ear to. One major character is French-Algerian, another, a native English speaker from South Africa. They’re based on an ex-lover and an ex-attendant; I’ve got those accents down.

My social network is not as broad as this may sound. Most of the Filipinos, Somalis and Tongans I met while I was in the hospital. To my shame, I asked some to “straighten out their accents.” I have a whole knapsack of excuses I could produce about why I did that, but in the end, they’re just excuses, based upon some deep-seated idea, ready to pop out with I am in extremis, that I own the language. When I complained to my lover about all the accents, there in the hospital, she said, “But you love accents. Remember?” I am forever grateful to her for reminding me who I am, who I commit to being.

I am enriched by the spoken music of the people my characters are based on, as a writer, as a human being. The world changed with the production of For Colored Girls, from the first performances at the Bacchanal, a dyke bar in Albany, California, to its long run on Broadway.

I never met Ntozake Shange. She took that Xhosa name in 1971, it means: She Who Lives With the Lions and Has Her Own Things. Her pride of lions pledge their help in ripping apart Standard English. They growl to Ntozake her own words: “I am gonna write poems till i die and when i have gotten outta this body i am gonna hang round in the wind and knock over everybody who has got their feet on the ground.” Her pride will open up the English circle to include the words of the languages of the peoples of all the diasporas. The lions vow to stay with her, and promise she will always, always, have her own thing.

[Here is a photo of Shange speaking at “Ntozake Shange on Stage & Screen” sponsored by Africana Studies at Barnard. She is with Professor Soyica Diggs Colbert, also African American, who listens and looks on respectfully as Shange addresses the unseen audience. The left handle-grip of Shange's purple wheelchair can be seen, as can her fabulous gold earrings that look like life-size scallop shells.]
Barbara Ruth at two years old: Oppositional defiance - before it was a disorder
 [Image description: a sepia-toned vintage '40s photo of the author of this piece, in which a young child, arm raised up in what might be a fist, appears to be saying something important...it is easy, somehow, to imagine that this child is saying "Freedom!" with vigor and gusto.]

the bio:
Barbara Ruth is a 67 year old Ashkenazi Jewish/Potowatomee dyke with multiple disabilities. She lives in San Jose, California and delights in IDing as neuroqueer.

Thursday, February 20, 2014

Always a Poster Child: Disability, Scrutiny, and Autonomy - by Elena Rose Lewy

In 1984, when I was 3, I met John Madden.  My family did not know who he was, but little did anyone know that exactly who he was would mean YouTube footage almost twenty years later.  It’s John Madden.  People own him.  He is a commodity, and not a person, but a thing, a brand.  

As was I.  The Madden experience became one of a few maddening, public, ridiculous displays of me being “cute.” Of my disability being “manageable” in the public eye.  I was a good specimen.  It ended up happening again. And again. And again. Uniformly, it would seem that my family felt empowered, while I felt that I simply wanted to crawl into a hole and become invisible.   It’s embarrassing, when you’re clinging to the ages of childhood pride, to be featured in articles which proclaim things about “good cripples,” even if they’re talking about people other than you. 

I eventually was not a “poster child” anymore.  There were other levels of scrutiny.  Doctors’ appointments and assessments conducted in front of rooms full of medical students. A specimen for Cerebral Palsy.  A science project to be pulled on and evaluated.  Scrutiny at home for what I was doing, and the moment my mother decided I was about to “catch the gay” from the Indigo Girls albums I was listening to.  I was 12, and my being queer was not on the radar. I liked folk music, especially Emily Saliers’ voice and guitar work. I would not experience my first girl-crush for two years, and I would not come out for another two years after that.  But to my mother, at age 12, I was about to catch gayness.

It doesn’t matter to homophobes if they are bigoted.  And it doesn’t matter to encroaching able-bodied people if they are creepy and without boundaries.  They will still try to prevent you from catching the gay. They will still comment on everything about you.  Traveling across the city, everyone feels they can stop you and evaluate your life. They want to tell you the story about their disabled cousin and how even though he’s a, well you know, they accept him. They want to ask you if you’re that girl they knew five years ago.  Part of your disability may well be face blindness, but you can tell THIS IS A STRANGER, and THEY’RE BEING CREEPY.  But people are totally sure they know you. They’ve met a disabled person before. So they know you.  You’re quite obviously her. You’ve just forgotten about it. How rude of you.

They want to give you “advice” about why you are not succeeding.  It often begins with something like, “I know what’s wrong with you.” And you may want to laugh, because even the doctor and all his medical students spent years studying you, scrutinizing you and evaluating you. But the woman on the corner between you and the train station KNOWS what’s wrong with you.

You’re DOING IT WRONG.  You should be doing it exactly the way you’re being told to do it. By everybody.

It’s not just for the big stuff, like parenting, (“You know if you had a baby you’d have to take care of it, right?” / “It’s okay, if you want kids, *I’LL* just come move in next door so I can take care of them when you can’t. [How would you know what clothes to buy them or what they’re going through? You’re disabled.]”), or sexuality (“So, like, can you…?” “Wait, you run a website on disability and WHAT?  But you’re…”), or finances (“Income must be reported and evaluated, along with disability status.”).  It’s the small stuff too, like your sleep, the hours you keep, the time you spend on the Internet. (“Elena, your sleep patterns are inappropriate.”)

Maybe it’s the poster child thing, or maybe it’s just being careful of boundaries, but I’ve learned very well I’m not allowed  to make these kinds of assessments for other people. Not even famous people, like John Madden, who belongs to every NFL fan.  I studiously avoid certain kinds of news about people, famous or not. Sometimes it explodes all over my news feed, like when my favorite actor of all time, Phillip Seymour Hoffman, died this year.  Or when Ellen Page came out. In both cases, I spent a lot of time on people’s threads gently reminding them to afford these people human dignity.  His death does not belong to us, and her sexual orientation does not belong to us either. They did not act with us in mind, gearing up for a major disappointment for their fans. They acted out of personal needs, be they psychological or physiological.  Their choices, forced or not, belong to them.  And mine belong to me.

There are quite a number of people who don’t like that.  For most of the people I interact with in my daily life, it would be easier if I sat down, shut up, and took what was offered to me, accepting the scrutiny as my lot in life.  Well, I did adapt to it, at the age of 12, when I took to the Internet in 1993 and became one of the heaviest users, mostly just trying to have a space where I could be heard and allowing that to blossom into being an Internet loud-mouth.  There were no pictures then, and I didn’t discuss disability at first.  It was easier in those days to avoid it and only disclose to people I trusted, who I was going to meet in person.  That was the function of the Internet, then. Not hiding, exactly, but a break from all the not being able to hide a single aspect of anything. These days, the Internet is quite different.  Hyper-scrutiny applies to everyone on the Internet, although one can argue for there being degrees, and people might try to get away from it by interacting in person, if they could pull away from Smartphones. It’s funny in a way to watch people subjected to something that’s been reality for me since I was born.  I was alone then, and I’m not now, although it often feels that way.

Speaking out is something I cultivated to counteract all the scrutiny.  I go in cycles with it of hiding it (I’m told this is a “pattern of abuse”), or talking about it all the time.  The cycle repeats.  But wherever I am in it, there I am.  Right now I’m talking about it, and so I’m here.  It might be a while before I shut up.  Or maybe I never will.

[Image description: a meme, stark white allcaps on a grey background, saying, "The only people who are mad at you for speaking the truth are those people who are living a lie. Keep speaking the truth."]

Wednesday, February 19, 2014

Centering Anti-Racism, by Ib Grace

Now, when people call me "crazy" or the R word, I am proud of it, because solidarity, and also actually nobody knows what autism is. I can relate to both intellectual and mental disability. It's kind of physical, too. There's pain a lot. I fall upstairs, trip on nothing and break myself. Plus I'm a queer woman. So I can relate to a lot of things.

Nothing about any of this will ever make me know what it is like to worry every day that someone will hatefully take it upon themselves to murder my precious babies just because of the color of their skin. Nobody should be able to relate to this. It is unconscionable. But Black mothers know, and this is a lot of our friends, and when they try to talk about it, I cannot just sit there and think to myself, 'but that's not me though,' or be all "gun control ok bye."

Deep, committed solidarity, love and respect for racialized minorities. I need to learn to do more. For me, it starts now, in this intersection, for all the world and everybody's babies.

Here is my friend Kerima's post, which inspired this awakening. It hurts to read it. I will always be grateful that I read it. Another such breathtaking must-read post by a writer I admire but do not personally know is linked here.

Thanks for listening.

Love, Ib

Thursday, February 13, 2014

Love, Not Fear

Dear NeuroQueer Readers,

Today is the Flashblog for Love Not Fear, being run by the #BoycottAutismSpeaks group.

Please if you get the chance and have the spoons, I would be honored if you would click onto my other blog, Tiny Grace Notes, to see my entry for this important action (and from which you can also click onto others if you like) which is near and dear to my heart and that of many in the Autistic Community.

Here's that link:
Tiny Grace Notes offers a little pictorial essay for the #LoveNotFear #Flashblog <3

Thanks very much for your time and support.

And remember to submit NeuroQueer articles of your own!!


Monday, February 3, 2014

The Body, by Heidi Wangelin

The Body
The body blushes as it thinks about the silver gray of her shoulder length hair reflecting in the sunlight as she walks the stone cobbled steps, her little red jacket looks like a welcoming sign to the body on this old campus where the body barely knows anyone. It thinks that she doesn’t notice the body; after all she is older, way older than the body. Her body is beautiful and tall, slender and she moves slowly with her hip replacement but still elegantly to the body, her necklace shining against her neck and the collar of her pink shirt. Her eyes are grey and blue like sea glass behind her black glasses- it is so damn beautiful to the body. So damn close yet so far to the body. It is trouble, it’s a sin to like her and her body and the body knows it will be laughed at or scoffed at, maybe even abandoned if the body told her. 
 [Image: woman in autumn landscape wearing red dress, jumping, long hair swept up in the wind in a striking fast snapshot. She holds leaves.]
The body has small almond shaped, gentle eyes like its father it has been told that it hides behind its red and black glasses with the gold nose bridge and longer eyelashes. The body hardly ever takes the glasses off because it doesn’t like how naked the sun feels against its eyes, how that someone may actually find it beautiful which scares the body and how its vision blurs.
The body is neither tall nor short so it is a bit awkward at times and it moves klutzily but yet it is advantageous at times since it can slip into places undetected. Like when she’s there in front of the body as long as the body doesn’t speak it can get away with it, as long as she doesn’t look back, the body only comes to about her hip. The body can quicken at the idea of love yet be repulsed at the same time as its mind wanders and stares over at her.
The body shakes its legs often to the point the desk hums and rattles in time annoying everyone in sight and sometimes at home shaking the kitchen table. The body loves to write but also hates how its hand aches when it does. The body almost always has pen or pencil ink on its hands because it never goes anywhere without a notebook in public or draws too much. The pencil or pen always hardens against its skin. It prefers mechanical pencils so it doesn’t have to refill it often and it writes smoother. It also only writes in cursive since it is faster but it has been told over and over again not to do it but its print is slow and childlike so it hates to do so, its hand scraped and bleeding that it has to put a bandage on. Once the body hurt its wrist by almost being run over, lying in the street, helpless and scared.
The body hardly ever feels pain; sometimes it is apathetic to it like when it bleeds from the shaving bumps it picks at. It is really quite dangerous and it when it does complain then everyone it knows worries. The body likes the sting of too warm coffee against its mouth yet not on its skin you can say it is a bit of a masochist that way. The body’s ears are sharp to the sound of music and conversation yet it can be totally lonely as it all jumbles into its eardrums and its own voice scares it because it is deeper and older sounding than it should be yet can be like a child’s when excited or scared. The body’s mouth is small with what people call freakish teeth which the dentist calls one in a million teeth- born perfectly straight like a movie star’s but it hardly ever shows it.  It has been told it even smiles when it is sad or angry but no one can see it because it looks down when embarrassed, sad, angry etc. The body never makes eye contact when it can get away with it. Sometimes it gets so bad that others worry. The body is autistic. The body has long hair that is almost as dark as coffee that it has never been dyed and almost down to the waist. It does not like its hair short and how the only sign of aging is its hair.
The body is often contemplative to the point of unfriendliness. The body hates the smell of people on the bus who use too many cigarettes, the pot sweet and tangy smells, gasoline and rubber, the piss from homeless people gone stale, the bitterness of alcohol smells and perfume or cologne on the college students who sit next to the body when it tries to zone out or sleep, yet cigarettes can smell good if it is attached to the right person which it only knows a few of so it is comforting. The body has been told it has a very sensitive nose. The body likes the smell of old books and certain people when they are close by. It can associate people better by smell including friends and family especially the smell of her. It should not be thinking of her again.
The body shivers in nervousness because it gets anxious easily. The body loves the feel of warm water against its skin until it turns red and plays with it in the shower letting it wash over its legs and between them before anything else comes out of the faucet. They call it stimming.
The body feels like it has gotten no respect and looks like a child to itself, it has been told it does not look a day over sixteen. The body has pierced ears and no makeup. It is 23 now. The body really hates its huge chest and sometimes contemplates surgery until it realizes it would be painful and expensive to do so, and sighs as it swells and changes it the most of any body part.  The body has been told it has a nice chest yet always covers it both for modesty and out of self-disgust.
The body cringes at the thought of sex yet it can’t help but wonder what the smells would be like, what touch feels like, and the noises, the sighing of another in its ear, the pain, and the ecstasy of someone to be with. It should not be thinking about that again, it is the only time it feels pain, real stabbing pain that makes the chest and stomach knot in aches, sadness, and anger. The body has been thrown against walls, slapped, and made to feel what it should not do like being slapped on the thigh, and being crushed before and the body has fallen down stairs and broke its back but no one sees how it throbs in pain and how sharp that pain is.
The body is now as disabled as its mind is and realizes that the world is cruel to the disabled and better suck it up instead of crying or getting angry like a child since because it never gets it anywhere. The bus drivers hate how slow the body is and no one understands why it hates stairs and is forced to use wheelchair ramps but feels guilty since it is not in a wheelchair, it makes it feel selfish and guilty. The body likes when people understand and even open doors for it. The body has a weak back yet is strong everywhere else.
The body thinks it is fat as it goes on the scale cringing at the numbers yet refuses to go on a diet and has a rounded stomach another sign of the pain from last year hidden under its best dress or sweater usually. What a stupid body.  The body almost died once and has a scar on the belly button to show where they took out the appendix. The body almost died again, this time as the result of drowning and intentional hate.
The body hates him yet can’t help but boil and cry at the same time when it thinks about him, it always has attracted trouble. The body can go mute and turn white as it does and it is too damn passive as it has been told many times and even mutters it to itself. The body has screamed a couple times but no one has heard it. The body almost smashed its fist into a mirror just hoping to see how it feels after its world came crashing down. The body has thought of ending it all at times yet is too strong or cowardly to end itself however you look at it. The body has slammed its head into walls and thrown things. The body has fainted twice during a medication black out only to sleep walk it off later, its eyes glazed and milky, blurry almost like it is drunk. Its left eye is sleepy when it does this.
The body should not be thinking of her or him again, it is too risky, too sad, and too dangerous. Its eyes glaze over at the thought and stares up at the ceiling light praying for a miracle that maybe it can fly away from here or maybe it will work out but it probably won’t and then sighs. The body tries to run but never gets far even when it ran track it was strong yes but always came in last place. The body should relax but can’t. The body sleeps pleasantly. The body hopes it can make it through again tomorrow. 

-Heidi Wangelin