Wednesday, February 15, 2017

Sometimes it's not me. It's you.


[Content note:  This is ranty, angrier than what's usually published here, and contains profanity.]
This isn’t what [SLAM] I wanted to be writing today.
It’s not even [SLAM] halfway through my day, and I am completely fucking fed up with non-autistic people’s utter care[SLAM]lessness about the world around them.
I’m [SLAM] sitting in a coffee shop that I normally like a lot.  [SLAM]
I nearly always have to leave my apartment and go out to a café in order to really get anything done—there’s [SLAM] too much available [SLAM] distraction in my apartment between the internet and all my books and art supplies and a hundred things that need doing around the house at home.  So I go out.
It’s [SLAM] Sunday, which makes it harder.  Places will be more crowded.  Some don't allow computers on weekends.  My usual favorites won’t [SLAM] have seats at all, and weekend crowds (containing more families and small children) are [SLAM] louder and [SLAM] rowdier than weekday ones (who are mostly students and freelance writers).  It’s also spitting freezing rain outside, so I don’t want [SLAM] to walk very far, and also I need to eat before work, so I need to be able to get back in time to do that.
This place is right off a subway stop and almost always has seats even on weekends even though it’s on the smaller side.
[SLAM]
Something is wrong with the pneumatic [SLAM] thingamajig that controls the front door’s opening and closing, though, and if someone opens it and then just lets it go at the outside of its arc instead of easing it closed, it slams with a painful metallic [SLAM].
There’s a sign on both [SLAM] sides of the door asking patrons to be careful with it, but about 75% of [SLAM] them don’t read it.  Or maybe they do but they don’t [SLAM] think it applies to them personally.  Or they [SLAM] aren’t taking the moment it would require to integrate the [SLAM] verbal information contained in the sign with the physical [SLAM] information conveyed by the fact that [SLAM] the resistance just feels wrong when you pull the [SLAM] door open in order to conclude that they need to be careful about how [SLAM] they close the door...to glean the kind of physical information from their environment that I have to be doing constantly.   [SLAM]
I don’t know.
[SLAM]
I start trying [SLAM] to warn people who I see enter and let go of the door, but most of them still don’t understand until it’s too late if they hear and understand me at all.
The barista starts trying to warn people, too, with [SLAM] only a slightly improved rate of success.
Finally he sends another employee to try to jerry-rig a temporary fix. 
[SLAM]
It doesn’t [SLAM] work.
[SLAM]
They try again about 15 minutes later.
[SLAM]
No luck.
Every [SLAM] time it seems like people are getting the hang of it and I start to relax, [SLAM].
Within a [SLAM] few minutes, my head hurts, my ears hurt, my brain feels like it’s bleeding, my eyes hurt, my hands hurt, and every nerve in my body stands on end every [SLAM] time somebody reaches for the door handle.
I’m reading, or trying [SLAM] to, a book that I’m really enjoying, by an author who’s a particular favorite of mine, and I resent [SLAM] bottomlessly that my experience of it, my ability to sink [SLAM] myself [SLAM] into [SLAM] the rhythms of [SLAM] his words, is being fractured like this.     [SLAM]
Ironically, it’s a book [SLAM] about disability and cure culture.
A woman [SLAM] waiting for her drink knocks a ceramic mug off of its counter display and it falls to the tile floor and {CRASH} shatters.
Yeah, I could “just go somewhere [SLAM] else,” requiring, at this point, a long walk in the freezing rain, for no guarantee there’s even a seat [SLAM] free in another café in all of upper Manhattan or that there [SLAM] won’t just [SLAM] be a different or worse issue wherever I wind up, or that I don’t just end up going [SLAM] home, whereupon I have wasted my whole entire [SLAM] fucking afternoon in transitioning.
            -Putting on/taking off boots, scarf, gloves, coat, hat, backpack, headphones
            -Make sure I have keys and Metrocard and chapstick
            -Leaving/arriving/getting on the train/getting off the train/coming in/negotiating enough room  to sit/sitting down/getting settled/unpacking/packing up to leave
            -From misery to misery, from getting nothing done to getting nothing done to getting my focus shattered again and again and again until even though I’ve had seven whole hours between waking up today and having to be at work, I have nothing to show for it except for a headache that neither Advil nor alcohol will relieve and wet jeans, cold feet, a short temper, exhaustion, and             inability to control my tone of voice which will now only be held against me, because I still have to go to work after this.
[SLAM]
Yes, I have ear[SLAM]plugs.  Firing range grade earplugs, as it happens.  They muffle the sound of [SLAM] the continuous door-slamming somewhat, but not the physical sensation [SLAM] of it, or the randomness, which are equally [SLAM] debilitating factors.
My day is going to [SLAM] be ruined even though I have done nothing wrong and made no mistakes here.  
[SLAM]

We use this blog to talk about our problem-solving, our resilience, our creativity, our self-accommodation and how those things make us successful by our own standards, but, like, sometimes there’s just no way around this:
I need you to be more careful.
I need you to pay more attention to the world around you and how it works.
I need you to watch your volume and where you are in space.
I need you to stop fucking with knobs on sound systems you don’t understand.
I need you to stop slamming shit and breaking shit and dropping shit and dragging furniture and not watching where you’re going.
This cannot, cannot, always be on me alone.  That I can do everything right, take every precaution to protect myself, short of just never leaving my room (and then I would doubtless be told that I was “letting my diagnosis limit me” or “using it as an excuse”), and still wind up hurt, sick, melting down, my ability to function for the rest of the day or the week ruined, not because of my [SLAM] autism, but because you don’t [SLAM] have any stakes in being more fucking careful about how you go stomping through the world.  It cannot just be my fault for existing and, like, daring to think I might be able to do something wild like go out for coffee before work without destroying myself.
I say things like "of course we want better treatments for things like anxiety," but my anxiety or rigidity are not the problems here; they are instilled and necessitated by my need to protect myself from your chaos and noisemaking and unreliability.
This is not just my inability to live [SLAM] in the world or deal with other people; this is not just that it’s hard to live in a city (although it is).  This is a function of how you treat the world around [SLAM] you.  [SLAM]
And when I startle or yelp in pain, other people look at me like I’m weird or frightening or disturbing, if they don’t outright laugh at me.  Somehow I’m the one who’s defective when your carelessness [SLAM] gets me hurt.
I have to spend most of my days doing complex, multi-variable calculations like this about how to get through a day; this takes up an unholy proportion of the mental bandwidth that I spend planning my life, and it is never, ever enough, and you know what?
At some [SLAM] point, it’s not me, it’s you.

Tuesday, April 19, 2016

I am Inconvenient

Reprinted from Yes, That Too

Gifted students are inconvenient. They get bored, sometimes hyper because of their boredom. They want to know why things work, not just what you do. Or they are gifted in one specific area that isn't covered much, and they drag that area into everything.

Disabled students are inconvenient.

How varies by disability.

The student who uses a wheelchair takes up more space in the hall.

The student who is blind needs braille textbooks, a screen reader, maybe both.

Because these disabilities are visible, are obvious, something is done (not necessarily something good- exclusion is often the thing.)

They get their wheelchair, or they get their braille, or they get sent to a special school where everyone is blind and everyone uses braille and it's not even a special accommodation.

You can't pretend it doesn't exist simply because it is inconvenient to deal with.

You decide to do nothing about it, but you can't pretend it's not there.

Autistic? Depressed? OCD?

They don't want to deal with that.

So it just doesn't exist.

We don't have those problems here.

They do, of course, but they pretend it's not there.

With no obvious difference, nothing you can see that says there is something different, they can pretend.

They can pretend that we are making things up.

They can pretend that we are just being difficult.

They can pretend that we are simply lazy.

They can pretend that our inconvenient behaviors are there for any reason at all.

So it is for a reason which makes it purely our fault.

So it is for a reason that does not require accommodation or education, but shame and punishment.

It exists, but they can pretend it doesn't.

And then we pretend it doesn't exist either, not wanting to face what they dish out when we try to make them see what is in front of their eyes.

Disability becomes an inconvenient part of ourselves that we would simply rather ignore, and then they have won. I refuse.

I will be inconvenient, and they will just have to deal with it.

Thursday, March 24, 2016

Isn't it time to leave your comfort zone?

Reprinted from Yes, That Too because one of the other moderators totally said I should.

I get asked this... sometimes. Most recently, I got asked this when I said I planned to stay in the same housing I'd had for undergrad through my doctoral program, since I'll be staying at the same university for it.

And yes, it is time to leave my comfort zone! I'm moving from mathematics, which has been a bit of a home to me since ever, and mechanical engineering, which I studied as an undergraduate, to neuroscience and computer engineering. That's a departure from my comfort zone. I'm walking a bit into the lion's den to be on a project designing technology for autistic people, likely working with parents and autism professionals in addition to my major professors. (I'm pretty sure I'm going to need to talk to parents and professionals, actually, since, as per usual, folks are thinking about children and since I'm apparently the autism expert on the team in addition to the technology and neuroscience know-how I'll be picking up during my studies.) That's an even bigger departure from my comfort zone.

My living arrangements are not the way it's time to leave my comfort zone. There's a few reasons for that.

Reason the first: Too many things changing at once is really hard for me! If I'd gotten into, say, MIT or Berkeley or some of the other schools I applied to, I'd have had to change my living arrangements in order to attend those schools. Since it would have been necessary, I'd have done it, but since it's not necessary, change for the sake of change and leaving my comfort zone is not going to be happening. I stick to changes that have good reasons, because change is hard.

Reason the second: My needs in terms of daily living might not be particularly complicated, but if they are not being met, bad things happen. I need easy access to food without needing to think much about how I'm getting said food or what I'm eating. That means I need a meal plan. My current housing comes with a meal plan, which is good. I also need to be able to avoid loud, bright places full of people. The main dining halls are definitely loud, bright places full of people, and we're not allowed to take our food out of the dining hall. Like many others, I know how to smuggle food out of the dining hall anyways, but when I am overloaded enough that I need to take my food out, the extra steps involved in doing so are going to be a problem. That means I should really be on a meal plan where I can take my food out of the dining hall. My current housing's meal plan allows this! So my current housing meets those needs, and finding other ways to meet those needs is effort that I don't need to make right now.

Reason the third: I don't drive. I passed my road test about two weeks ago now, so I legally can drive, but over in reality-land I don't drive. Driving tends to knock out my ability to speak, often for an hour or two after I'm done driving. (Even though I have no issues with going to class, work, or practice while non-speaking, I won't knowingly do things that make me lose speech for class, work, or practice.) Given that public transportation around the university is extant but not great, that means I should be living on campus. 

In combination, these reasons mean I should stay put. It's actually tricky to find housing on campus as a graduate student, and the on campus options for graduate students don't come with meal plans at all. It's possible to buy individual meals at the main dining hall (or at my current housing, though we don't get to take food out when we're buying individual meals as non-residents,) but having that as "one more option" as opposed to "the default I don't need to think about" won't actually increase the probability of my eating meals. 

So yes, I should leave my comfort zone sometimes. I should also think carefully and critically about when, where, and how I leave my comfort zone. 

Sunday, September 20, 2015

Movement teachers: I am your dream student. I am your nightmare student. (Crosspost)

I highly doubt anyone who has or will endeavor to teach me movement things will ever read this, but on the off chance they do. It may also help someone else who is trying to teach sports or dance or other similar things to someone who does movement like I do. 
Movement teachers: on the surface I am your dream student.

I'll walk in. You'll show me basics. Or have someone show me basics. They will do them at the same time I do, so I can exactly follow. I'm echopraxic, you see. If I have someone to exactly follow? I can do that. I can make my body do exactly what they do--or as close to exactly as different builds allow.

You will probably think that I am talented. I probably am not. I am echopraxic and I have a big library of movement to draw from. So as long as I have someone to follow I can look comfortable with the things.

You may be tempted to skip steps. You may forget there's things I haven't learned. I know how to do a lot of things with my body because of years of dance, gymnastics, & team sports. This is why I can give you the impression I have an aptitude: because if it is on the ground or in the air I have probably done something similar. I've done gymnastics. I've spun a flag & marched at the same time. I've done some ridiculous number of styles of dance. I've played basketball on feet and on wheels. Whatever you're showing me, I'm sure to have a bit of muscle memory that relates enough that I can copy you or more advanced people.

Here's where I'm your nightmare:

I can only copy for a substantial amount of time. Yes, I can do exactly what someone else is doing while they do it. But until I've over learned the movement, I will be inconsistent. Things will be in the wrong place. Things will be in bafflingly wrong places the first 200 times I try to do the thing without mimicking. The next 200 times I have to talk myself through it. I may say one thing and do another. I will find new & exciting ways to do the wrong thing.

Did you skip steps? Or forget that I hadn't learned a thing? This nightmare trait you can blame other movement instructors for, as it isn't a natural part of my makeup : I will still try to copy. I will still try to figure it out without asking. I may not know how to do the thing, but if you're asking me to I am going to think I'm supposed to. I know I haven't been taught it, but asking has rarely gone well. Clearly someone who knows what they're talking about thinks I already know it. Asking gets all sorts of belittling when you're asking about something 'easy' and can do things that are 'hard'. I do not need that in my life. It's easier to watch, copy, approximate. It may be more physically dangerous but I am more confident in my ability to avoid injury with my body than I am with instructors' ability to not be a jerk if I can't do something they forgot to teach me.

It takes a very long time for me to get things consistently in my motor memory. I'll do it extremely well Monday. I'll do it extremely well Wednesday. Friday it'll be all wrong. My body forgets which way to go, or which foot I do things with, or what order things happen in. It doesn't just forget new things. It forgets old things. A couple years ago my body forgot how to do a backhandspring--something I've been doing well over half my life.

And I am your surreal dream:

I'll learn to approximate skills. They'll be okay if I talk myself through them. Or maybe I can't do the skills at all. And then for some reason I won't even attempt them for months. Suddenly I get the ball at that spot I can't shoot from, or that dance move will become relevant. Without hesitating, thinking, anything my body will do it. It may even do it flawlessly. And you'll be confused. You didn't think I was holding out on you but maybe I was.

I was not holding out on you. My motor planning really works that way. Sometimes I have to hack it by putting myself in a position where doing something automatically is the easy option. Thinking about it hasn't worked, but letting natural movement suddenly lets my body do what it knows.

I may lose skills or movement patterns that are easy, but not the more complicated ones. There may be rhyme and reason to this, but I haven't been able to find it & neither has anyone else. I can tell you why specific combinations of movements or individual skills are hard but not why I lose things.

We're back to why, if you are willing to work with me, I'm your dream student:

I'm motivated. If I stick around long enough to master something that confused me, you are likely stuck with me. I don't stop doing things because they're hard; I was the kid who couldn't write my name. Who literally tripped on my own feet. Who couldn't organize movement well enough to get a book out of a desk without spilling its entire contents. Who couldn't kick the ball in kickball or serve in volleyball. Who only made the basketball team because it's no cut. Who got dropped from basic level tumbling classes until I spent a couple years with a book in the park painstakingly teaching myself cartwheels & walkovers, because no one else thought I could learn it. Who could not eat my food without also wearing it.

None of that is exaggeration. I was born dyspraxic. I no longer function as dyspraxic. I rewired my brain on my own. You have not met motivation & stubbornness until you have met me. In my life as a movement teacher, I say "hard work beats talent because hard work shows up" and I will always show up. I may get frustrated, but I want to work through it. I've made "beating my coordination challenges into submission" a way of life, & I will continue showing up unless you make me unwelcome. In which case I will take my motivation, stubbornness, always trying to be better somewhere else.  But "hard work beats talent because hard work shows up" applies on all sides here, & take it from me, beating talent with hard work starts as a nightmare but it turns into a pretty sweet dream.

This is cross posted from Radical Neurodivergence Speaking

Thursday, July 23, 2015

Reclaiming the Dignity Lost In A Diagnosis

by Cas Faulds

As an autistic person, I have multiple facets to my identity – just like everyone does.   One of those facets is that I am also a parent.   My son is autistic, and I know what it is like to sit with professionals and be told how limited your child is.  I know what it is like to receive a diagnostic report that includes horribly negative words about deficits, and I know what it is like to have to explain that to other people in your child’s life including teachers and family members.

So, based on that, I would like to offer some advice to parents who have gone through this process that I wish someone had given me when I was there.

Take the diagnostic report, full of the language of the pathology paradigm, and reword it to reflect the neurodiversity paradigm.

How?

The best way that I can explain this is to give you an example:

From a report:

X appears to have impairments in communication and social interactions.  In addition, he was reported to have several restricted and repetitive behaviors.  Specifically, he was noted to have difficulties engaging in a social conversation, high pitched vocal tone, impairments in use of eye contact, difficulties socializing and interacting with other children, and limited emotional reciprocity.  He also collects rocks, has an inflexible adherence to routines, displays heightened sensitivities to light and loud noises, and finds it hard to cope with changes to his daily routine.

No, that doesn’t say anything positive at all!

So, how can I reword this to say something positive?

X has differences in his communication style and social interactions.  He prefers to engage in behaviors that are comfortable for him.  Specifically, these include conversations that remain on topic and relevant to him.  He prefers not to make eye contact because it is uncomfortable for him, and he prefers interacting with children who are older or younger than him, rather than only interacting with his age mates who can be less predictable.  He loves collecting rocks because he is interested in the different shapes and substances that rocks are composed of.  X prefers predictability in his daily routine, and enjoys being in sensory friendly environments.

Why?

Why should you do this?  Why go to the effort of rewriting a professional report?  Because you are going to have to introduce your child to teachers and therapists and you’re going to have to do that more than once.  When you do, you want to do that from a place of strength rather than a place of weakness.  You want to highlight your child’s unique potential rather than place limitations on them, and you don’t want to have to confront all those negative words every time you do this.  This way, you have the words you need to ensure that your child receives the support that he/she needs without trading in his/her dignity.

As an autistic person, I wish that my parents had accepted me for being me, rather than trying so hard to make me into their version of me.  Their efforts to make me into their version of me were unsuccessful but it did result in me feeling as though there were things wrong with me.  For my son, I want him to be able to be him, without having other people give him the message that there is something wrong with him.  This way of introducing him to people who will work with him sets the tone from the beginning that you value I value my son for exactly who he is and I will not allow them to try to change him.

Monday, June 1, 2015

On Verbal Speech

By Kit Mead


I worry about being taken seriously if I write about certain things non-anonymously. Today I decided to write about them. Verbal speech tends to be a pre-requisite of society, and what would people say outside the disabled community if they read this and know that speech isn't all that great for me?

Anyone who has seen me talk out loud knows speech is not, perhaps, my first language. My first language was writing cat stories about a fictionalized version of my first kitten, Tabby, lost in a world of written words. I was in third grade and this is what I liked to do: Write and write and write.

My speech works best when I can read off my laptop, or if I've typed it out in advance. It's why my conversations with friends about activism tend to be with my laptop open. I'm telling them about the posts I already wrote and quoting, and also paraphrasing with words that make me sound slightly angry. I don't have the access to prettier out-loud language.

Okay, sometimes I actually am angry, but usually not as angry as I sound out loud.

Someone once told me I was more expressive than this other autistic person they knew. I wish they knew that my real words come down on paper or Word documents. They spill out faster and with more clarity there than I could hope to achieve out loud unless I have prepared over and over again in advance.

And I don't want to prepare over and over in advance unless I'm actually giving a presentation. Because I need people to accept me with my slightly stop-and-go conversations with words hacked into pieces and sometimes losing their meaning. I need people to know that I don't always mean what I say because I can't always have words out loud.

Tuesday, March 17, 2015

On Being An Unexpected Kinesthetic Learner

I start to rediscover that I’m a kinesthetic learner, and it’s odd.  It’s so contrary to everything I’ve ever been told about myself, and it feels so good.

When we started learning about multiple intelligences theories, kids who were described as kinesthetic—as learning most naturally through movement or action—were dancers, naturally talented athletes, the class clowns, physical actors, the kids who could never sit still.  Kids who were always in trouble for not being able to stay in their seats, likely to pick up a diagnosis of ADHD somewhere along the way.  High-energy, daring, uninhibited, and loud.

And I was very quiet, very still, very inhibited.  I was always in trouble in PE for not knowing what in the world I was doing or being totally unable to keep up with the rest of the class.  I was badly coordinated and nowhere near fast enough for any team sport.  I never placed in any event in Field Day.  I failed out of gymnastics.

Kinesthetic learners were generally thought not to do well in school because of their need for activity and movement.  I sat quietly in class and got all A’s. I had a photographic memory.  Teachers were always scolding, “You can’t expect to only study the night before and do well on this test!”  But I could.  I got into the gifted class and kept my hands rolled up in my sleeves.

But all the while, I just ached to be taught how to do things.  I clawed my skin off from having not enough to do with my hands.  And I could feel the terrifying void that existed between the fact that I knew about a lot of things, but I didn’t know how to do almost anything.  The scrutiny of other people was literally paralyzing.  I resented more than anything as a kid when we’d be told that we were going to learn how to do a really cool thing, but then what we actually got was obviously a fake, dumbed-down version, of making gingerbread houses or uncovering fossils.  People told me a lot about how I was never going to make it in the real world, but nobody seemed to want to teach me anything real.

But writing is movement, too, and I was better at that than most people.  So is beading.  So is loading electrophoresis gels, and my biology classmates marveled at my dexterity at that.  

As a child, making tuna salad or cutting up fruit for myself, people try to take knives away from me, sure that I’m going to cut myself, but I never do.  (They do.)  I never fall on steep hills or icy sidewalks when adults are sure I will.  I never sprain an ankle toe-walking.

I could feel that if I could know a thing in my body, in my joints, in my bones, in how it behaved in my hands…anything I could make a physical habit out of, was a thing I’d always be able to do, that I could never really lose or forget, the way I’ve forgotten calculus almost entirely from disuse, and chemistry, and how I’ve lost my photographic memory to other cognitive demands.  (That one makes me mad.)

I start stealing opportunities to do that.  Time without a well-meaning adult hovering over my shoulder was time to steal fire.

We have typing class in 9th grade, and once I start learning, my fingers twitch constantly, ghost-typing out any sequences of overheard words against my thigh.  I had no idea what was wrong with me, why I couldn’t stop.

I was in high school, and may’ve been listening to a lecture from my grandfather about the difference between people who work with their minds and people who work with their hands, and thought silently, “If I don’t work with my hands, I’ll go insane.”

My acting teacher tells me to get my hands out of my sleeves.  I turn out to be good at acting.

At a new job, I initially panic when I learn that my nightly duties will involve moving pianos by myself.  But I quickly get a sense of the individual moods and idiosyncracies of the Hamburg, the New York Steinway, the Fazioli—their resistance and center of gravity.  They almost have individual wills, like baby elephants.

I get told at a meet-up that I have very loud hands, and it makes me so happy.


I start teaching myself a little ASL to make up for the apocryphal childhood gesture language I was trained out of, that I have no conscious memory of, and it feels like breathing air instead of doing complicated sorcery.