Just Stimming…

A land we can share (a place I can map)

Space Lettuce

with 3 comments

[Prepared text of a speech given at the Autistic Self Advocacy Network’s 10th Anniversary Gala on November 16th, 2016]

Hello! Hello, and thank you all so much for being here. How’s everyone doing?

Great. Great, that’s wonderful. I’m so glad to see you all here. We had a lot of internal conversations, over the last week, about how to go about throwing a party after the events of November 8th. And it came down to this idea, and I think it’s crucial, that joy has not gone out of the world. This is a somber time. We’re all feeling pretty grim. And as we look around and talk to each other and begin to figure out what we’re going to do now, it’s critical, it’s absolutely critical, to also set aside time to reflect on and commemorate and celebrate how far we’ve come and what we’ve done. Because, as Ari has reminded us, as Chai has told us, and as our awardees are about to demonstrate, we have come staggeringly far.

We know that change comes inch by inch–slowly, painfully, at an exhausting grinding crawl, and then sometimes all at once. We cannot move forward on grim determination alone. My job for these next ten minutes is to talk to you about what comes next, about what we do now, about what ASAN is planning and preparing for, and I have to tell you that the first thing has to be joy. We have to be able to remember and celebrate our wins and the truth that we fight for. We are looking at a long, long haul, and we’re only going to make it if we bring our joy and our love with us.

When we’re preparing for a trek such as this, it’s important to know that we cannot go it alone. The work of building strong, committed coalitions between the many communities which overlap with and make up the disability community is what will sustain us through the next few years. To return to a truism, “We must, indeed, all hang together, or most assuredly we shall all hang separately.” I am speaking to you as a disabled women, as a lesbian, as someone who loves and works and lives with trans people and people of color and people from different socioeconomic backgrounds and faiths and nationalities. We can hang together, or we can hang separately. These are our options.

Working in coalition, we have to mobilize our grassroots, right now, immediately, to defend and advance the progress we’ve made. Protecting the affordable care act. Medicaid. Deinstitutionalization. Self determination. Access to justice. As you can see in our annual report, ASAN has been systematically developing our capacity to produce accessible advocacy resources–guides to policy and action that people with cognitive disabilities, our families, and really just anyone who isn’t a lawyer can read, understand, and use. We have to build that Hidden Army, and grow our grassroots in places we haven’t before. In the past, ASAN has done a lot of very wonky policy work, and we certainly plan to continue that–let me know if anyone here wants to geek out over quality measures for MLTSS, and I’ll be there in a second! But now more than ever it is critical that we are giving our grassroots the information and the tools they need to advocate, to participate in our civic society, and to have not just a say, but the final word in decisions about our lives and our futures. Nothing about us, without us has never mattered more.

So we’re going to produce materials explaining what a bloc grant is, how public comment periods work, and how to visit your senator in their district office. We’re going to collect people’s stories about why the ACA and coverage of pre-existing conditions is so important, and we’re going to mobilize our networks to ensure that the healthcare we fought for eight years ago stays in place. We’re going to work with other organizations focusing on civil rights, voting rights, and access to justice. We’re going to make sure that whenever the minimum wage is discussed, disabled workers are included and subminimum wage is abolished. We’re going to keep fighting for Olmstead implementation and deinstitutionalization, because now is not the time to give up on life, liberty, and the pursuit of happiness. And we’re going to keep advancing our work in supported decision making and self-determination, because making choices is a human right, and human rights don’t come with 4-year waiting periods.

It’s going to be hard. Yes.

So we’ll do what’s hard.

We have always overcome impossible odds. It is something out of science fiction that we exist at all. Autistic self-advocacy, self-advocacy, disability rights and the community we have built–all organizing is science fiction, as Walidah Imarisha said, and when we organize we find ourselves  building a new world. I draw strength and conviction in equal measure from the fact of our rich history. We have done so much. In just the last few years, we’ve seen an increased acknowledgement and acceptance of the fact that cure, as a concept, is not an ethical–or scientifically plausible–response to autism. Can you imagine? If you had told me five years ago that Autism Speaks would remove the word ‘cure’ from their mission statement this year, I would never have believed you. We have a lot left to do there, but we did that. The number of people with disabilities living in institutions has shrunk to a bare fraction of its peak. We did that. We defined what home and community based services mean, and as a result, the quality of life for people receiving those services has and will continue to increase as we restore autonomy, self-determination, and basic human rights. We did that. How long have we worked for those things? How hard did we fight? Is there a single person here who could call it easy?

There is so much more to be done. Even for each of the examples I’ve cited, enormous amounts of work remain–autism acceptance and self-advocate representation must replace words like “treatment” and “prevention,”; our people still trapped in institutions must be freed; we all know far too many people living nightmarish lives of quiet desperation in what we call on paper a ‘community,’ and of course even one person in that particular hell would be intolerable. The work ahead was already unrelenting, and as we look at the next few years, I think we all feel a little knocked back, a little desperate, a little panicked that after everything we’ve done, it could all be unravelled.

But when I think about our community, and when I think about our trajectory, I am still filled with hope.

We’ve built something incredible, something that has defied the odds, and we’re not done yet. We’ve fought hard for our existence. We’ve fought hard because the idea of ASAN is important: the idea of an organization run by and for autistic people ourselves, an organization capable of sophisticated advocacy at a local, state, and national level, taking on policy and legal challenges and working to ensure that wherever and whenever issues impacting the lives of autistic people are discussed, we’re there–not just sitting at the table, but leading the discussion. That idea is important, but it’s an idea we’ve fought to turn into a reality because it comes with tangible, real-world consequences. Self-determination, access to healthcare, community integration, communication justice–these are not academic theories but lived realities, and the policies we make and the arguments we have directly impact people’s lives. We are the organization that cares about the details, because we know that the details are where our lives are lived and lost. And as long as that’s true, ASAN needs to exist, bringing light to those details and pushing for a better world–now.

Prior to last week, when I was working on this speech, I had a great story to tell you about 2 different futures. That story is still true. So I want to talk for a minute about stories, about the future, and about the stories we tell for what the future can look like for autistic adults, adults with intellectual and developmental disabilities, adults with significant disabilities–whatever label we want to insert here. The stories we tell about disability, about autism, and about our lives set our expectations, and those expectations set up our futures. And right now we have stories for 2 starkly opposing visions for what we think life can look like for autistic adults.

The first vision is all about safety. Safety. Our best hope and our biggest expectation, we are told, is to be safe. In this vision, we are safe! We are so, so safe. Our housing is safe–designed specifically to keep us safe. Safe, special housing, with all of us in one place to keep us safe. There are devices that can track us to ensure that we never venture beyond safety’s borders. We have guardians, to ensure that all decisions related to us are sanctioned and sound and safe. If we work, we are working somewhere safe, of course, optimized to us and our needs and the needs of our also autistic, also disabled coworkers–safely supervised, of course, by someone without a disability. Thank god. We are kept safe in a cocoon of specialized services, cradle to grave, from the behavioral modification that teaches toddlers to stop flapping for their own good all the way through to the adult ABA that providers assure us is really just person-centered, since the reinforcers are tailored to our specific behaviors.

We are so, so safe.

Now, in case my tone hasn’t tipped my hand, I should clarify that this is obviously a story that ASAN and self-advocates find to be deeply dystopian. But it is difficult to articulate an anti-safety agenda, as it were. Safety is good! We want people to be safe! It’s an understandable motivation! And yet we know that safety isn’t safe. We know what the abuse rates for ‘safe’ segregated placements are. And we’ve seen this before. We have a century and a half of history showing us that institutions, campuses, farmsteads–whichever you’d like to call them, and when you line the descriptions up over time it becomes impossible to tell the difference–aren’t safe, even if they have a lovely pool and a beautiful garden. Any time you take a group of marginalized people and put us together and isolate us, safety leaves the equation. Every time.

So when we are choosing between possible futures for our community, I think we can do a little better than safety. Certainly our community deserves better. But what would that second story look like? What stories do we want to tell?

I want to tell stories with unlimited options. I want autistic people to be safe–but I also want us to be happy, self-determined, included, valued, and unremarkable. I want our lives and our happiness to be commonplace. I want us to be people–we are people! With boring, ordinary lives. Lives that we are in charge of. I want each of us to be free and supported to be living the best life for each of us. I want the same thing we want for everyone else.

And, handily enough, I believe we have a right to that. I have a right to be in charge of my body and my life. I have a right to live free of abuse and neglect and discrimination. I have a right to make mistakes, take risks, and to be bored. I have a right to participate, to access the same things my peers access and live the same boring, ordinary, beautiful life.

And I know that right now, on November 16th, all this talk of rights feels like science fiction. But listen, we grew lettuce in space this year. Did you know that? We grew lettuce in space this year. We are living science fiction. We can do this. We’re already doing this. The ADA generation has grown up, and with the strength of disability rights law at our back and the blessings of our community in our hearts, we are changing what the world looks like. We’re changing who gets to be in the story. We’re changing what the story is.

This is not the end. This isn’t even the beginning. This is the long, hard middle that gives every story its heart, its meat, and its staying power. We are beautiful and we are strong and our shared humanity is at its best when we’re all in. And that’s what we’ll be working toward for the next 10 years.

Thank you.

Written by Julia

November 17, 2016 at 1:48 pm

Posted in advocacy

#DressingWhileDisabled

with 93 comments

The shoes.
There are two stories I could tell you.

One: I’m clinging to my roommate’s arm, trying to (re)learn how to walk in heels.

Two: a friend sent me a pair of shoes.

*****

One: I wore heels, once. I was in a choir, a choir that was a Really Big Deal, and the high school girls had to wear character shoes. I got the lowest possible heel, and I was okay, mostly.

I liked how they sounded on the floor, so sometimes I wore them in college, or to DD council meetings, or when I went to Washington. I think they had maybe a half-inch heel.

I lost my character shoes in the move. Two years went by. I tore all the muscles in my left ankle, every last one, and I couldn’t go to physical therapy.

I put on a new pair of heels, and I knew, instantly that I didn’t remember how to do this.

*****

Two: my life looks very different from high school. I am connected now, in some pretty formal ways, to hundreds of disabled people all across the world. A couple of weeks ago, one of those people, a Facebook friend who has done a lot to show me what living with pride and joy in a disabled body looks like, posted that she had somehow wound up with a pair of mary janes that were far too big for her. Did any crip femmes she knew want them?

They were a size 11. I usually only have 1 pair of shoes at a time, and let me tell you, finding cute shoes in your size when you are over six feet tall is not easy. I said so. She sent me a picture, I noted they had heels, we worked out the logistics.

A few days ago, they arrived. I was having a bad hands day, so my roommate helped me open the box.

The Roommate opening the box.

I did remember how to put them on by myself.

*****

I am autistic. Just like the screenings warn, I walked on my toes when I was little, and until I hurt my ankle this summer, I still did. I can dance, kind of, not really. In my own way. I have a lot of trouble with conventional femininity: I wear long skirts and long hair after a religious upbringing, but I don’t have the motor skills or the patience or the social-cognitive something for most of the work required to do femme traditionally. I can’t put on my own makeup or paint my nails; I can’t fasten any clothes that a typical six year-old can’t. I used to be able to pin up my braids, but I lost that skill sometime last year after going too long without OT. The day you see me with my hair perfectly coiffed and my eyes carefully made up, in a coat that buttons and boots with no zippers, is the day you know I’ve either been married or placed on a Medicaid waiver.

Like a lot of disabled women hoping no one notices we’ve snuck into the professional world, I cling to the few scraps of traditional femininity I can hold on to with my teeth. My friend, another autistic woman in the workplace, calls it “femme-NOS.”

I am wearing the shoes.

Being able to wear heels again would be a big deal.

*****

“We’re gonna walk around the room,” my roommate says, and I nod and hang on for dear life.

“Why did you want these?” he asks.

“The gala,” I say, grimly. One of these days I am going to be dressed to kill.

“Okay,” he says. At the last gala, he helped ferry me from guest to guest, guiding me through the crowd and staving off meltdowns and making the loudest night of the year mildly enjoyable.

“We’ll have to practice a lot.”

*****

One of my other friends runs a blog called CP Shoes, about disability and shoes and some other things. I know as soon as I volunteer to take the shoes that I am going to want to write a thing for her. I’m writing, again, because some things worked out and I have a little more energy, a tiny bit of space for words left in my brain on the weekends.

Some of my friends and I are starting to talk, in various places and various ways, about #DressingWhileDisabled. There are a lot of stories about disability out there, and not a lot of them look like our lives. We have to tell them ourselves. We have to tell them together.

I sit down, and there are two stories I can write.

One: I’m autistic, and there are things I have to learn and struggle with and overcome, like wearing heels.

Two: a friend sent me a pair of shoes, and on a night dedicated to celebrating disability and community and the way my brain and my body glitch at each other, I’m going to wear them.

I want to write a story about shoes and disability, about the connections disability community makes between people who are very short and people who are awkward crashing giants, about the ways my life has gotten so much bigger, about objects and ideas that get passed from person to person, about the ways that disabled women or crip femmes or we take care of each other when no one else will.

We’re taking it one step, one story, at a time. And these are the stories I want to see.

I am stepping out.

Written by Julia

January 31, 2015 at 11:34 pm

The Talk

with 15 comments

There’s a new person in my life, so we’re having the how-my-body-works talk.

It’s a conversation I don’t think nondisabled people have. It goes like this: this is my body. This is how it works. It moves this way. These parts of can feel, and these can’t. This will hurt me, and this won’t. I want you to know these things. This is my body, and this is me.

“We should have the conversation about physical contact, but I don’t know how it goes,” she said.

“Well, fortunately, I’m really good at this conversation,” I said. “I have it all the time.”

I’ve been thinking a lot about the kinds of intimacy my disability forces me into. Most people don’t have to brief half the people they meet on what they can and can’t see. But the truth is that my body works like yours right up until it doesn’t, and if you aren’t ready for that, you could get hurt–or I could. So I have this conversation with dates, new doctors, friends, coworkers who are filling in and giving support. I have had this conversation on the grass, in bed, in exam rooms, on kitchen chairs. It goes like this: I have autism. That means my brain and my body have a hard time talking to each other.

Sometimes I give examples: I move funny, and I can’t always control it, and maybe most importantly, I can’t always start moving when I want to. Sometimes my skin can feel things; sometimes it can’t. Usually it comes and goes in patches. A lot of the time, I can’t figure out how to move. Sometimes I notice pain, and sometimes I don’t. Sometimes my body tries to pull itself apart. Sometimes I know in advance when I’m going to have a bad body day, but usually I don’t until I’ve dropped something all over the floor.

Some of the conversation is important: I feel pain differently, but I do feel pain. I can’t feel my body and use words at the same time. Being around other people is physically painful, always, every time, but sometimes it’s worth it. I don’t always realize I’m hurt or sick, but every time a doctor has found a part of my body shredded to bloody pieces by my own fingertips, it’s meant that there was something seriously wrong happening underneath–my hands knew before my brain did. Before I can stand up, I have to find my legs, but sometimes I get stuck. Here is how to prompt me. Here is what kind of power having those passcodes means.

Some of the conversation is weird: my body language doesn’t work like yours because I may or may not be able to move those muscles at any time–so I need you to look at me and make different assumptions. I move typically, until one minute you look at me and you see the way my hands hold a cup like a toddler, until my body twists and jerks back in joy, until I don’t move at all. I was born functionally blind, and then I gained a lot of vision, and then I lost some of it again, and now there are a lot of things I can’t see, for two different reasons. If we go into a new room, I will need you to tell me where to sit. I will ask to borrow your eyes, your hands, your brain.

It’s not a big deal, I say, and I need it to not be a big deal to you.

These are conversations I am good, or at the very least practiced, at having, but they still make me want to crawl out of my skin. Insisting on having these conversations, instead of pretending my body works in all the standard ways, means taking up space and focusing attention on myself as a disabled person. We aren’t supposed to do that. And because my disabilities aren’t necessarily visible, are easy to miss or to misinterpret at first as something else, my conversation partner might not understand why I want to have this conversation in the first place. It can be awkward and fraught–please understand this thing about me, please understand me–and there’s not much precedent. There isn’t a standard social script for this. There’s a temptation to just learn to avoid the need for the conversation entirely–just blend, just let yourself get hurt, just avoid other people entirely, rather than subjecting them to a litany of all the things that make your body different.

I still feel that way, sometimes, and sometimes I think I can get away with not having the conversation. And I can, right up until someone reaches out to me, and in the time it takes my brain to process what’s happening, decide to reciprocate, and send the necessary signals down and out to my body to start moving, the other person has paused, seen my lack of movement, and withdrawn, shuttering.

“Here is the thing about me and hugs!” I write, later. Here is the thing about me and touch. Here is the thing about me and my skin. Here is the thing about me and my eyes, me and my hands, me and my disability, me and my body. Here is the thing about me.

It’s a weird conversation. But I wouldn’t trade it for the years when I didn’t know how to have it. There were whole years when doctors and parents knew that I couldn’t see, that my leg muscles were knotted and my torso was floppy and my body didn’t listen to my brain, but no one told me, and so I thought I was bad.  My body didn’t work, I thought. I didn’t work. But that wasn’t true–it’s just that no one had taught me how my body worked, let alone how to talk about it. You shouldn’t have to be a stranger from your body. And I’m not, anymore, and I don’t want you to be, either.

This is my body, I say. Look what I found out. Look what I know now.

I want to share this with you.

 

 

Written by Julia

January 17, 2015 at 6:01 pm

Dangerous Assumptions

with 25 comments

There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.

When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.

If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.

And it’s a slap in the face, every time.

Written by Julia

December 21, 2014 at 4:39 pm

Confession Of A Woman In A Refrigerator (Speech Without A Title 2.0)

with 27 comments

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

So the thing is, most of this belongs at the bioethics conference, but, but, jesus.

I remember being in high school and not being sure why, exactly, college had to be a thing, because I was going to be dead by the time I was thirty.

(Two-thirds of the way there and I still can’t see more than ten years down the line and maybe, maybe a small part of what I’m doing is motivated by now or never, I’ll do this right.)

Why would I be dead by the time I was thirty? Well, every other girl like me never seemed to make it to womanhood, it only stood to reason.

At some point, and I’ve told this story so many times and it never stops making me want to cry, I started hearing about other disabled people. People who were older than me, people who weren’t about this thing is going to kill me one of these days, people who weren’t about living with, living with, living with, not dying from disease, people who were disabled and alive and not sick, not dying, but raising hell and building lives and screaming, screaming, screaming when we were being killed. 

People who used words like we.

I thought, we, yes. We. Okay. We can make this work.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

When you are disabled, when you are traumatized and vision-impaired and autistic, even and maybe especially when you haven’t been given those access codes yet, you learn to see yourself as the walking dead. You are vast swathes of nonexistence, cut off and left for dead at every missed milestone and swapped pronoun and bruised shin and scar on your face. There are Other People, Normal People, People, and then there is you,  and you are defined by the parts of yourself that match to everyone around you, and then the vast swathes of nothing. Disability is absence, disability is inability, disability is death, and you are a woman in a refrigerator. 

It takes you a while to learn that you aren’t the one who put you in the refrigerator. 

It takes longer to learn that it wasn’t your body, either.

A lot of us never get to the point where we can say it was you, you tried to kill me, you made me think I was dead, you screamed about the injustice of putting me in a refrigerator while you, you were the one killing me.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

And you made me think it was my fault.

One day, I will write a speech that isn’t this one, this choked and untitled remixed stew of you tried to kill me, and you made me think it was my fault, and now you will listen.

When you’re disabled, you see death everywhere, and it isn’t because your body stands out or doesn’t stand at all, it’s because everyone talks about you like you’re in a refrigerator, like you’re not real, like you’re dead.

And it kills you.

They kill you.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

What I am trying to say is that of course, of COURSE, of fucking course we notice, because we can’t not, because the bioethics conference has one day for beginning-of-life issues, where they try to cut us out, and then a day for end-of-life, for those of us who slipped by, because last week twins in Belgium asked the state to kill them because no one ever told them that they didn’t have to go into the refrigerator. 

What I am trying to say is, my friend has a friend who uses a wheelchair and didn’t get screened for breast cancer because she’s already dead, right? 

And you, you, every single one of you who said we are helping, we are saving you, something cruel and unjust has been done, and then you made disability mean death and shoved us into the fucking refrigerator. You killed us.

I didn’t know how to die until you taught me.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

Question: if nobody but disabled people know that disability and death are distinct and not overlapping concepts, does anyone really know? Or are we just trees in the forest, falling (well, growing, would be the point,) with no one to hear?

What I am trying to say is, I am now Someone Who People Meet, and I know that there is a vast we out there, and I know that I am living and a woman and disabled and that none of these contradict, and I dragged myself out of the refrigerator by the skin of my teeth and said you will listen to me now, and this evening I felt sick when some friends offered to transcribe something for me, and I still can’t see myself making thirty.

And what I am saying is, this thing is going to kill me one of these days, and what is going to kill me isn’t going to be my back screaming at me or my eyes turning off or my head going through a wall, it’s going to be everyone who says we’re just trying to get you out of your refrigerator

I pulled myself out of the refrigerator you put me into the day you started grading people into people and cripples. I pulled myself out the day another woman in another refrigerator told me, like passing on a secret, we aren’t dead yet. Someone let me out of your refrigerator, and you can never put me back in there again.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

I’m disabled. I’m not dead. I’m not in a fucking refrigerator. I am living, living, living, and I am screaming, screaming, screaming. 

And, just in case you should care…

Yeah. I noticed.

Written by Julia

January 24, 2013 at 5:39 pm

A Fifth Is Two Sine Curves

with 56 comments

(This post could be seen as a self-narrating zoo-exhibit with bonus spot-the-theory-of-mind. I hope you’ll take it as a follow-up to The Obsessive Joy Of Autism, as equally about the experiences of visual processing impairments and synesthesia as about ~autism, and as a case study in the inadequacy of traditional verbal language. If I’d been taught earlier that experiences which exist independent of words are still meaningful and sufficient, I never would have had to write this.)

(This whole essay represents a dozen years of heartache, a fractured self-image knit back together, and the entire reason why I will never, ever talk about the instinctive simplicity of video editing.)

(Note: as is typical of my writings, pieces are rarely finished in the same day they are started. The voice lesson I refer to as “today” is in reality long past; in fact, due to circumstances regrettably beyond my control, it turned out to be my last. I have been unable to further explore the discovery my voice teacher and I made, and it aches.)

(This entire piece is written in a voice I don’t very much care for. My apologies.)

(I can either keep apologizing in parentheses for a lifetime, or just tell it to you.)

A fifth is two sine curves, and this is the most beautiful thing.

I’ve had a dozen years of classical musical training, and I’ve been playing with calculus for about the same amount of time. I don’t talk about either of these things with much frequency. I don’t like to sing in front of people, and I have a passionate love affair with math but hated and barely passed my classes in high school. I drink up geometry videos on youtube, and once a week I go to my voice teacher’s house and sing for the best hour of the week, and these things are secrets. Very few people know how important music and math are to me, and that’s been a deliberate choice on my part.

I don’t talk about the most sacred things, because it’s the fastest way to destroy them.

I have an intense and embodied relationship with music. Music is a lot like people, and songs are linguistic and therefore social exercises. Music teases and tells and remembers and reflects and transforms and encodes and transmits. I experience music kinesthetically, emotionally, and intimately. It is shattering.

I know a lot about music. I hate talking about it, because the things I know aren’t the same as the things you know.

My left hand doesn’t have enough coordination to permit me to play any instruments. I can, and do, sing, and I’ve spent 12 years learning to do so with surgical precision. I can’t sight-sing–I can peel apart the layers of a piece for theory, no problem, but identifying pitch and tempo and dynamic and a note’s place in the overall piece, and integrating those elements, factoring in timbre and placement, and singing them, in realtime, is simply not possible with my visual processing impairments. I rely on an ear I’ve spent years training–if there’s one other singer, or a pianist accompanying, I can do a passable imitation of first-time sight-singing even pieces I’ve never heard before.

Ever since I first joined an (auditioned, highly-selective, then-prestigious) youth choir at age eight, I’ve known that I do music wrong. At first, that took the form of being shamed for moving when I sang–music shouldn’t be a physical, embodied, tactile experience. In later years, my inability to process visually rapidly enough to sight-sing, and my difficulty holding a harmony, made rehearsal a living hell. Yet I was never kicked out, because I could still sing circles around 2/3 of the other singers, and it wasn’t that I couldn’t harmonize, just that I might sing any one of a range of acceptable harmonies and not necessarily the one I was arbitrarily assigned (or the one the composer had written,) and as long as I didn’t talk about it, no one knew I couldn’t sight-sing. (I did, of course, talk about it; lying didn’t occur to me until later years.) I trained my ear, led the 1st sopranos because the melodic options are necessarily restricted and usually sensical, kept my joy at things I had the wrong words for to myself, and kept singing.

(My life goes on
in endless song
how can I keep from singing?)

It destroyed me. I loved this, I was so good at it, it felt good and right and perfect, and yet any attempts to communicate about this were miserable failures. Singing is the only time I ever feel at home in my body, and yet I felt like a fraud; sure I could learn a new song faster than anyone using only my ear, but I couldn’t sight-sing. Clearly this was some elaborate hoax I’d engineered, clearly I didn’t have any real aptitude, and clearly, my decision not to pursue college or career in music or performance was the only ethical option.

Despite this, despite the guilt and shame and confusion, I’ve kept going to weekly lessons. It’s an hour, just me and my teacher and a piano, and as we pull songs apart and test what my throat can do, the songs resonate between my ribs. It is, essentially, an hour of breathing exercises, so it’s the most effective therapy I’ve ever had. And I’ve kept going, and today, finally, after 12 years, we figured it out.

There were signs. The music teacher at my high school had almost worked it out; he’d play two notes, and I’d hear a third, and not every student could. He talked about harmonics and melodic structure; I listened, and adored him, but had trouble talking to him. With my voice teacher, I complained that the standard system of music notation was nonsensical, bearing no correspondence to the way music actually worked, and relied on a flagrant disregard for basic arithmetic. I struggled with the idea that a fourth is supposed to sound “smaller” than a fifth, and though I could sing any note back perfectly, I couldn’t tell you which notes were higher or lower. None of the language used to communicate about music made any kind of sense to me. The spatial metaphors simply would not map. I had my own rich, dynamic, embodied and visiospatial experience of music, I could feel and see the music move, and sheet music couldn’t come close.

I’ll tell you what my teacher and I learned today, but first I need to give away my other secret: math.

My history with mathematics is, if possible, even more tortured and rapturous and bewildering than my relationship with music. As a small child, I was in love with arithmetic; my mental calculation abilities are noted on my earliest evaluations (and dismissed, of course, as splinter skills.) One of my earliest memories is of not being able to explain to a concerned teacher why 2+3=5. “Because it is,” I said. “And it’s beautiful. It just fits.” Manipulatives were meaningless for me–my eyes couldn’t process them easily, and they didn’t bear any relation to the ladders and scales of numbers in my head. I simply had to close my eyes, and think of an equation, and I would feel myself swing from number to number, landing effortlessly and securely on the answer. Easier than walking.

(There’s a hint to the eventual reveal, there.)

While I had some small troubles learning the language for arithmetic (especially for fractions, which are fun and clever enough as pointless rituals but beautiful when you realize that they actually signify multiplication and division, that you are performing meta math,) mathematics was an easy joy. Note, please, that I am talking about the art of mathematics, not the drivel and formulas we’re drilled on in school. Mathematics really is an art, and it’s inherently playful. It’s a game of “what if” and “how can I.” And when I was eight years old (and still now,) what I wanted most to figure out was how I could model, and therefore predict, events in the world around me. In particular, I was fascinated by the rate at which raindrops crossed and accumulated on my car window as my mom drove me to therapy.

So I invented the fundamental theorem of calculus.

I didn’t know I was doing this at the time, of course. I didn’t know what algebra was yet; if I’d heard of calculus, I thought it was about calculators, which I found woefully inefficient. I’d never heard of Liebnitz, and Newton had only been hit on the head by a terrifying apple, as far as I knew. I didn’t use the greek alphabet or sigma notation; I didn’t use any notation at all. I just ran some dimensional transformations in my head, checked my model for accuracy, and had a nice visual to keep myself comforted when my hands needed to be still.

Eight years later, my AP Calculus/Physics class was asked to prove the relationship between derivatives and integrals, and I got up and drew the model, and not a single one of my classmates understood. After a moment of studying what I did, Mr. Morris said, “spoiler alert, Julia just skipped to the end of the lesson and proved the fundamental theorem of calculus.”

I can’t draw it for you now; I lost the image, along with some of my more unusual human-calculator prowess, when my psychiatrist put me on the anti-psych medication regimen that ended in me dropping out of college. But I could then, and before that day, I hadn’t realized that my classmates couldn’t see that basic, innate relationship, the reason why calculus is beautiful enough to ache. I didn’t have the language for it, had never even heard of the fundamental theorem until my teacher told me that was what I’d done. I’d just been amusing myself with models and transformations, when I should have been paying attention in class.

See, that’s the thing. I struggled in math class from Algebra 1 on. I never actually took the AP calculus exam–Mr. Morris thought I’d do fine, but since I was technically auditing his class, I didn’t want to try and sit for it. And this is where the agony comes in.

Much like music, the way I experience and represent mathematics cognitively is fundamentally different from the conventional language we are taught for it. With arithmetic, this difference only really caused difficulty when new terms were being introduced. But 2+3 is always 5, and I had enough innate understanding and motivation to preserver through even the most ridiculous name choices.

This all fell apart when I got to algebra. It’s not that I lacked understanding–I’d been solving for the missing number since I was nine, and the only hardship I’d had there was, again, in comprehending the linguistic absurdity of mixing letters and numbers and shifting the missing piece to the left side of the equation. As soon as I got over that, I immediately started attempting to teach the game to anyone around me, including my four-year-old sister. Algebra wasn’t the issue. The way we represented it, modeled it, and talked about it? That was a nightmare.

Graphs on a cartesian plane have a lot of meaning for me–for another purpose (clue.) They also bear absolutely no relation to the kinesthetic and visual models I see when I craft algebraic equations. Zero. None. And I couldn’t articulate this in high school, anymore than I could make myself care about pitch or slope whether the equation came in point-slope or some other form. I didn’t understand why we were talking about graphs at all. It wasn’t until algebra 2 that someone explained to me that all of our equations were supposed to be models for those lines.

I was enraged.

I still am, thinking about it. What a stupid waste of my time. Who the fuck cared about lines? I wanted to know how to model the age distribution of my peers around me and how it shifted in relation to me as we moved through the grades, how to fit equilateral triangles with a side length of 2in inside a hexagon with 6in sides as efficiently as possible, how to predict prime numbers. Why on earth would I make an equation for a line I couldn’t even make my hands draw reliably half the time?I wouldn’t! This possibility had never occurred to me! I had better things to do!

So I didn’t care about graphs. Later, in college, my math major friend would teach me the theory behind linear algebra in half an hour, and I would concede that graphs were pretty fucking intense, but in high school, all I knew was that I was being asked to humor, to indulge teachers who were never sure if I was a genius or in the wrong class in their fetish with graphs that my eyes, more often than not, couldn’t even process as a whole.

It did not go well.

There were parts of algebra, of course, that I loved. I enjoyed modeling numeric patterns (“series,” I was told, and “summations,” I just called it numbers) like 2n + 7, and there were moments when the graphs for these, or for my favorite exponents, lined up with the stacks of numbers I saw in my head, and the graph became, fleetingly, meaningful. (It was argued that graphs themselves were by definition simply visual models of numeric patterns, and therefore should have been my favorite thing. I defy anyone to look at something like THIS

graph of 2n + 7

and honestly tell me that they instinctively see either 2n + 7 or 9, 11, 13, 15, etc. in that.) Systems of equations were a game that made me laugh and resembled the way I’d play with numbers in my notebook margins when we were supposed to be caring about matrices. Matrices were for our calculators; I was a human calculator, insulted by their existence.

My first three algebra teachers understood none of this. I did well in algebra one, as long as I wasn’t asked to graph anything; as far as I was concerned, I was doing slightly fancier arithmetic and then humoring Mr. Morris by labeling things as he wished. Algebra 2 was all about graphing though, and it made me want to die–and now, in an exciting plot twist, the equations had gotten long enough, and the graphs complex enough, that my visual process started undermining me, scrambling letters and transposing numbers and fragmenting graphs, and with it, my grade. But I passed, by the skin of my teeth, and had a brief reprieve in geometry, and then got a better teacher for precalculus who, in the last two weeks of class, realized I had a language processing problem. We stayed after school one day and hacked enough accommodations that I could FINALLY start to use the conventional vocabulary and start training my eyes to read equations like stories again, the way 2+3=5 is, and then graph the story out accordingly. Just in time for the bonus unit on calculus.

I looked at a derivative for the first time, and my models and raindrops and joy came rushing back, and I was in heaven.

Derivatives and integrals made sense because the transformations they undergo are multi-dimensional, just as the ones I assign my models are. But I didn’t ace calculus. I took an introductory course at Stanford the summer before my senior year of high school and passed on sheer intuition despite missing 1/3 of the classes, but the first few tests I took in my AP class came back with failing grades.

My teacher and I worked it out. It was, as always, a visual processing issue: permitted to solve an equation on a white board, standing up, with more space than I could possibly use, colored markers, writing as large as I needed, and only one problem presented at a time, I could earn 100%. Give me the same test, after I’d already taken it on the whiteboard, but this time package it as a two-page test on an 8×11 inches sheet of paper, and I’d get a 40%.

It seemed easy enough to accommodate: let me take my tests on a whiteboard, with my teacher dictating each problem to me one at a time, and I could be the best in the class. The beauty of reasonable accommodation! But it wasn’t that easy; the teachers were working to contract in protest of their current salary, so my teacher couldn’t stay after school or come in early to test me. If I’d had an IEP I would have been protected, but my parents were told that students with IEPs weren’t permitted to take AP classes. The solution, the administration declared, was that I would audit the class. I could sit in on every class, do every lab and homework, receive no credit, have my motivation and self-esteem destroyed by a year of failing every test but doing any in-class problem on the board perfectly, teach my class the fundamental theorem of calculus but be humiliated every day by my inability to correctly read and copy equations off a sheet of paper, and everybody won.

I don’t remember much of the class. I was an anxious, humiliated, depressive mess, unable to concentrate, still haunted by graphs. It was a combined calculus/physics class: I loved the modeling, but my language processing made the word problems we were given for physics exhausting. There are bright memories, of course–drawing out the fundamental theorem, hacking labs, solving problems at the board, practicing integrals with Tommy for fun, tutoring a classmate over Facebook chat for a test that I failed with a record- breaking amount of transcription errors but she got an A+ on. But I hesitate to call myself mathematically inclined now, and that needlessly hellish year is why.

Math and music are some of the most sacred and meaningful things in the world to me. I don’t talk about them, because that requires a 12-year trauma history and interfacing with a language that treats these two things exactly opposite of how the should be.

(Do you know the secret, yet?)

This is what I learned, at the last music lesson I ever took: I see musical compositions as the graphs I spent years being tortured with perversions of, and I move through numbers like a song.

The spatial metaphors we traditionally use for music (notes are higher or lower; a second is a whole step, a third is two whole steps, etc.) fall apart for me not only because of their flagrant disregard for basic mathematics, but also because my primary concept of music lies in harmonics: in the spaces between tonic and supertonic, in the beats of the frequency of a given pitch, and all the different ways we can stretch and collapse and layer and color them. This is what I see, this is what I hear (and the two are, in this instance, the same,) every time music plays. Sheet music is as pale an imitation of this as a graph of y=3x is of the multiplication table. And yet, the transformations I drag my models through, the process of solving an equation (and I’ve never been much of one for solving, really; just give me a model and I’m happy, and maybe that was the problem with algebra all along,) is actually perfectly encapsulated by the language and metaphors musicians use to interpret sheet music.

And I just wish that once, at some point, just once during those long twelve years, someone said to me “this language isn’t working for you. Let’s find a new one.” Because then I could have told you, at eight years old, before I could even conjugate reliably or deviate from my scripts, that:

this is what C sounds like:

sine curve

this is what G sounds like:

sine curve

this is what a fifth sounds like:

two overlapping sine curves

and this, Mrs. Lowenthall, is why 2+3=5:

sheet music

Written by Julia

October 31, 2012 at 10:02 pm

Someone who moves like you

with 55 comments

Buckle up kids, because this gets long and personal.

So, a long time (~7 months) ago, in a galaxy far, far away (rural New Hampshire,) there lived a sad little girl (or KICKASS ADULT,) named Julia who just so happened to have a friend named C. C and Julia had spent the past several months talking too much altogether about Glee, and C had begun to push for Julia to add a second show to her plate. Some brightly-colored sitcom about derelicts going to a community college.

And Julia was skeptical, but C was persistent, for she knew that if Julia liked the first two minutes, Julia would have a new favorite show. See, C knew something that Julia did not.

C knew that Abed Nadir existed.

Now, there are a couple of things you, gentle reader, must know about Julia in order to appreciate what happens next. First, you must understand that, ever since she had been born and maybe even before, Julia had been autistic. And second, you must understand that, because of this, Julia had spent her whole life watching and learning stories where she had no part, no point of entry, and no value. Julia was trained to imagine herself in stories as someone she was not and could never be, and to define the story of her own life in terms of how it failed to be reflected back to her. And sometimes, most of the times, Julia forgot that she was a person. Stories are important, and she didn’t have one. You are a mistake isn’t a story. It’s barely even a sentence.

I must warn you now that this is not a story of how C or Dan Harmon or Abed Nadir or even Julia herself saved or healed Julia. It’s in the script, but Julia wouldn’t have a voice in any of those stories, either. No, gentle readers and vicious tumblr-ers, this is a story of what it means to start a new story and see on your screen, for the first time, someone who moves like you.

Do you understand what that means?

It’s probably not something you’ve ever really had to think about. But how someone moves is the first thing telling you whether or not they might be able to be you, and you them. And for the first time in Julia’s life, she looked at a character on television and saw a yes.

Abed Nadir walked onto Julia’s laptop screen, and nothing and everything changed.

For the next seventh months, there was a lot of CAPSLOCKING IN GOOGLE CHAT at C about Community and Abed Nadir, but very few words elsewhere. Which was odd, because when Julia liked things, she tended to talk about them too much. This was one of many things she and Abed had in common.

Except, here’s the funny thing. Abed said “I just like liking things,” and it wasn’t just not-punished, it wasn’t just okay—either of which would have been remarkable and unbelievable—no. It was good.

And Julia, who had endless words for a great many small and unimportant things, couldn’t say anything more about Abed beyond he moves like me.

Abed Nadir, you see, is an autistic character.

There’s a difference between TV Autistics and autistic characters on television. TV Autistics—Bones, House, Sheldon, Sherlock—are caricatures, and, not coincidentally, all fan-diagnosed. They are socially awkward/anti-social/socially maladapted, eccentric geniuses free of any serious adaptive functioning limitations, motor issues, sensory sensitivities, or language differences, able to manage independently in all major areas of daily living, with a bonus side of savant skills and the empathic range of a rock. They’re awesome, but they’re a stock character, and they manage to simultaneously hint at the autistic experience without actually meaning it. It’s like that poster about gay subtext in popular that was going around a while ago

the irony being, of course, that for a show that is “so gay,” it’s actually not gay at all. The people in charge have found the perfect ratio of homoerotic subtext (all of it) to actual gay characters (none of them) to keep the fangirls creaming their pants and the money rolling in. No one involved has any intention of meaningful inclusion or exploration. You avoid any potentially unpleasant consequences, because the choice to have a gay character was never actually made.

It should be noted that autism isn’t the only reason Julia grew up without People Like Her on television, and it’s not even close to the only reason she has a Thing about stories. And that’s the curious thing about these TV Autistics—someone who’s watched one of them in action is much more predisposed to assume that since Julia is autistic, and since she’s got this extended metaphor (bonus points if you say perseveration) about stories going on, stories must be her Special Interest, the framework through which she filters the world, the poor half-human thing.

And they are, but that’s because Julia is, shockingly, a person at her core. And people need stories.

Which brings us back to Abed.

It’s entirely possible Julia over-identified with Abed, just a tad. Which struck her as first a bit odd—they’re nothing alike, Abed thinks The Breakfast Club had a plot and likes falafel and his mom had the decency to leave— and then as more than a bit precarious. This wasn’t supposed to happen.

(Somewhere, fiddling with her contacts, C arched an eyebrow and said “it wasn’t?” and Julia cyber-kicked her.)

Abed Nadir walked around like a bird or a giraffe, and he couldn’t do thumbs-up and he talked too fast and knew too many things and he was sharp and suspicious and easy and trusting. He did things that were simultaneously uncanny/creepy and sweet/thoughtful, and he couldn’t do bills or read clocks but he could tell psychiatrists to fuck off and he could fight with his best friend when his best friend tried to take charge, and he was jealous and sharp with his crushes. He had friends and private worlds, and all the scars that come from growing up a mistake, and things were imperfect and messy and painful and visceral but he always emerged okay.

Abed Nadir said “please don’t do a special episode about me” and Jeff Winger promised he “wouldn’t dream of it.”

And then he told Abed to pick one reference, and Abed picked 16 Candles, so they sat on the counter and ate chicken.

(And Abed didn’t mind who he was kissing so long as he got to be Han Solo, and also he delivered several babies and got to be the good cop and the bad cop and used his diagnosis to get rid of an unfortunate lab partner and took advantage of a stranger in a bar’s patience so he could talk about Farscape.)

And stories are a scary and messy business, full of magic and demons, taunting possibilities and rules-that-aren’t, things we can’t have and altogether far too many opportunities for a sad little girl’s heart to be ripped out of her chest, and Julia kept watching, every week. And you must understand that asking Julia to pick one Abed moment is liking asking Abed to pick one reference.

You must understand that one story is infinitely bigger than zero, and it may still be very small and nowhere near enough, but it’s something.

And yes, her heart was eventually forcibly extracted when Dan Harmon broke his promise and Virtual Systems Analysis was the dreaded Special Episode. And Julia remembered how to breathe, and stitched herself back up, because she hadn’t really needed that heart, anyway. And when it turned out that someone else would be in charge of Abed next year, she remembered what she had always known to be true about happy endings and said goodbye, mourned more than she had for any corporeal person (which was still not very much,) and folded away that part of herself and went back to not existing.

But for seven months.

For seven months, she had.

Written by Julia

June 4, 2012 at 12:44 pm

Posted in media, personal, stories