1:42am March 21, 2015

Speech is gone, and typing is back.

Thank every god that’s ever existed, and those who haven’t as well.

There are advantages to speech, and I was beginning to hope that maybe I’d go back to how I used to be: Speech coming and going as needed. But I got a long night’s sleep the other night. And I discovered when I woke up that speech was gone except for interjections. And my brain felt so quiet, so painless.

I don’t think I like speech, even with its advantages. I know people who would give their eye teeth for speech. They can have whatever is left of mine. On the ultra rare occasions I can speak (I’m maybe 1-3% verbal), it reminds me of the Little Mermaid, who wanted so bad to walk on land that she was willing to let every step feel like knives. That’s how my brain feels on speech. That’s also how my legs feel sometimes due to hypermobility of joints, but that’s another story.

32 notes

1:47am November 27, 2014

When your entire communication system is threatened over what can be a really small mistake or a really big one, but still a mistake.

Have you ever told a lie?

Have you ever gotten fantasy and reality confused?

Have you ever deliberately sought to find out what a person was thinking, and then said it, so you could seem with-it, or sound smarter, or feel more connected to that person?

Have you ever played out fantasy as if it was reality, even if you knew the difference?

Have you ever, when writing, accidentally used someone else’s words when you meant to use your own, thought you were using our own, were sure you were using your own?

Have you ever changed your communication style based on who you were talking to?

Have you ever been unable to communicate around some people, totally able around others, and somewhere in between around others?  Where “in between” can sometimes mean forcing words out, words that aren’t quite right, or using rage as fuel to get the words out, tainting your communication with anger?

Have you ever told people what you thought they wanted to hear?  Told different people different answers to the same question based on what you thought they wanted to hear?  Told people things you never actually believed, based on what you thought they wanted to hear?

Have you ever just been plain wrong about something?

Have you ever said something you wished was true, but wasn’t?

Have you ever said really strange things that seem totally out of touch with reality?

Have you ever made bizarre or grandiose claims about yourself because you wish they were true, or because people around you told you they were true?

Have you ever had other people convince you to say things that you didn’t want to say and didn’t beleive?

Have you ever said someone did something they didn’t do, just to get them in trouble?  Without necessarily understanding the magnitude of the trouble you’ve caused, until it’s too late?

Have you ever had enough trouble communicating at the same pace as someone else, that your answers lag behind for seconds, minutes, hours, days, even months or years or decades?  So that it sounds like you’re responding nonsensically, when really you’re responding on a different time-frame than others?

If you can speak, chances are that these actions had consequences, and that you didn’t like all the consequences.

If you can’’t speak, or can only speak with great difficulty, and have recently been granted a communication system that works for you, you may be in for a shock:  Your communication system may be taken away the moment you do any of these things.  You will constantly be judged to see if what you are saying is “really you”, and this will be true even if you don’t use facilitated communication.  

Helen Keller got into a huge controversy when she wrote a story that she thought was from her own imagination, but it turned out to be from someone else’s work, that she must have been exposed to very young and then completely forgotten about except subconsciously.  I’ve had such things happen to me, but they never sparked international controversy about whether i was really writing my own words or not.  Which is exactly what happened to her.  it happened to her so terribly that she began to doubt her own communication, her own thoughts, she thought maybe they were all from someone else.

FC and RPM users face a dilemma because they often need very close contact with people in order to communicate.  Tito Mukhopadhyay handwrites totally independently, but his authenticity has been called into question because his mother must be standing there drawing his wandering attention back to the act of writing.  She doesn’t direct what he writes, she just directs him so that he can write.  That’s RPM, which is new on the scene.

FC has been around for ages, and there really is the danger of facilitator influence.  But it is still not fair to an FC user to make their communication contingent upon what they communicate about.

Lucy Blackman, an autistic woman who went from using FC to typing independently, heard as a child that a school got closed down because children there reported sexual abuse.  So Lucy, wanting to get out of school, tried to tell her mother that she had been molested at school.  Fortunately her mother was shrewd enough, and knew her daughter well enough, to see through this and asked a set of follow-up questions that Lucy couldn’t answer, and Lucy eventually admitted the real reason she’d said it.  Unexpected reports of sexual abuse were one of the things that made FC so controversial.  Of course, many of those reports turned out to be true.  But many were not true, and families were torn apart by it.  If more people approached these claims the way people did around Lucy – the claims of a child trying to manipulate her environment without understanding the long-range consequences of doing so – there would probably be no controversy.  

Facilitator influence is only one of many possible causes for false allegations.  And worse, deliberate facilitator influence happens in some of these cases.  The same as a situation I once saw where an illiterate DD man had a staff person who wrote his emails for him, and she began writing false accusations against other staff into the emails, because she and a certain case manager wanted to separate him from his favorite staff. it worked unfortunately… and I saw his true feelings towards a staff person we both shared, who had been fired because of false accusations.  We were out shopping one day, and he was out shopping with his new staff.  He looked horrible, they really had been abusing him and nobody was batting an eyelash.  Abusing their power over him anyway – treating him like a living doll, who they dressed up in punk clothes and gave him a mohawk “for fun” without consulting him.  

Anyway, he got one glimpse of our mutual staff person.  He was someone who had tremendous difficulty walking and normally used a wheelchair.  He’d spent most of his life until recently being horribly neglected in a group home.  Our mutual staff person had been teaching him to walk, and teaching him to say no to people, and to stick up for himself, and those were the real reasons she was fired.  Anyway, he saw her.  He jumped out of his wheelchair, ran, not walked, over to her (it was a weird-looking run but it was definitely a run, not a walk), hugged her, and begged her to know where she had been, why she had left him, and when she was coming back. In conversation it came out that the case manager who orchestrated this whole mess had told him that our staff person had quit because she didn’t like him anymore.

And that all happened without FC involved at all.

When FC is involved in such a situation, the entirety of FC is called into question, the entire validity of everything a person has ever said is called into question, and a person may lose their entire communication system in one fell swoop.  (This also makes it really easy for a facilitator good at influencing people, to deliberately have people’s communication systems taken away by giving them more physical support than they needed, making influence easier, and then influencing htem to say things that are likely to get their communication system taken away.  This can be done out of spite and a desire to hurt the person, but it can also be done in order to make it easier to abuse the person without anyone believing it, or without the person having any means of communicating about the abuse.)

This is why the issue of FC and allegations of sexual abuse is so complicated.  Because FC is a complicated process, with many possible pitfalls.  One of the worst parts of it all, to me, is that someties people who use FC need facilitator influence in order to communicate.  Their words are not entirely their own but their sentiments are exactly their own.  This happens when FC is a process of two people working together, whose communication is collaborative rather than the work of one person.  It’s sort of like having a co-author, only on all of your words, not just the ones that will be written down into book form.  And there are times when it needs to be acknowledged clearly that this is what is happening, that FC for this person involves co-authorship, not single-person authorship in either direction, and that this is fine with both parties involved.  This is a kind of FC that I could benefit from, I could benefit from it massively, even though I rarely need any form of assisted typing in the physical sense.  

I know it’s out there happening because I’ve talked to people who do it.  People who are very scared to admit it to nondisabled people, but who will admit it to someone else with a communication impairment because they know we’ll understand.  I’ve also detected it happening myself, just from watching the flow of movement between the two people’s bodies and minds as they typed, the swirl of color that emanated from both of the and came to mix in the middle, forming a rainbow of new colors.  I could feel the movements as if they were movements in my body, and it was like two people dancing, but neither leading the dance, both dancing where the words and ideas took them to.  Am I big on synesthetic analogies?  You bet, I’m a synethete many times over.

There are also stereotypes that come into play.  Some people believe that autistic people or developmentally disabled people are too ‘innocent’ to lie or manipulate.  So if such a person communicates a lie (of any kind, not just abuse), or says something solely to manipulate others, then people willl call their communication into question rapidly.

One of the worst things about this is that many of the above things I described at the top of this post?  They’re things people learn not to do only by long experience communicating.  Often an FC user has spent years or even decades of their lives silent and unable to use words.  Often autistic people, regardless of whether we can speak fluently and communicatively or not, whether we use FC or not, have been too socially isolated to learn these lessons.  So if we do also use FC, RPM, any kind of assisted typing, or even just an aug comm device, our authorship of our own writing may be called into question.  Whereas if a nondisabled person did the same thing in childhood, people around them would react in ways that would show them whether they really wanted to continue communicating in this manner;  Too often, disabled people are thought of as aliens, people who would never do the normal human things that normal people do.  

I’ve had my own authorship called into question, and my autism called into question, by the same people, over the same writing!  First they said I was super low functioning and being exploited, but then when they found out (I made it no secret, it was all over my blog) that I used to speak, or that I had been to college, then suddenly it was a whole different ball game.  Now I was just pretending to be autistic, because a real autistic person wouldn’t say the things I said.  In both cases it was “A real autistic person wouldn’t say this,” but the first solution was to call my authorship into question, and the second solution was to call my integrity as a person into question.  I can’t say which is worse.

And as I’ve described, so I won’t do so again, complete strangers have seen fit to “test” my authorship in public.  One walked off laughing after rendering me too rage-filled to answer the question he put to me to “prove” my authorship.  (And public Turing tests are only one of many ways people think they can sneakily try to detect whether I’m the one communicating or not.)  He thought he’d just debunked a fraud being perpetrated on me where people pretended I could communicate by programming a computer with seemingly realistic responses.   

(The irony is that would be a very good description of at least 80% of my communication from the ages of 5 to 19.  But I was the one perpetrating the whole thing, “programming” my brain to give adequate responses, and I did it using spoken language, so very few people picked up on it other than a really good shrink and a really close friend.  A friend I didn’t even quite realize I had at the time, the whole story is told in this poem, it’s long.  But very few people caught onto the real fraud I was perpetrating – the fraud that I could communicate fluently and accurately.  That’s the only way I’ve ever truly been a fraud, is pretending I had abilities I didn’t.  I had to, to survive.  There are those who wouldn’t pretend abilities they don’t have, and those who can’t, but there are those of us who find ourselves at least somewhat capable of it some of the time, and for us it can mean the difference between life and death.)

The consequences of taking people’s communication systems away from them are direr than dire.  Some people have committed suicide after such an event.  They’d lived years or even decades with no means to communicate, had hope handed to them in the form of a communication system that worked for them or was beginning to work for them, and then had it cruelly stolen away from them.  That loss of hope devastates a person.  To finally have what you’ve always dreamed of, or never dared to dream of, you open yourself up to be vulnerable to a lot of emotions.  And if that thing is taken away, then all that vulnerability gets channeled into rage or depression or suicidal thoughts or all three.  The person may start self-injuring or hitting people again after having stopped for years when they learned to communicate.  And, at worst, they may commit suicide.  And nobody will ever know how many such people have committed suicide.  They’re already judged not capable enough to communicate in words – they’re also judged not capable enough to plan and execute their own death.  So their death will be reported as “She wandered into traffic,” “He wandered in front of a train,” “Sie wandered into a pool, fascinated by the water, fell in, couldn’t swim, and drowned.”  Sometimes those stories are exactly what it says on the tin.  Other times they’re suicides.  And when they occur right after they’ve been denied communication, you can’t assume that’s random chance.

Anyway…. I just want to impress upon people that people who speak fluently in a way people understand readily can get away with things, communication-wise, that nonverbal or functionally nonverbal or semi-verbal people, or pretty much all FC or RPM or AAC users, can’t.  And even superficially fluent people can get treated like this at times depending on their disability.  But when your communication hinges on access to a technology or a person or a technique or all three, you’re horribly, horribly vunerable.  You’re not allowed to make the communication mistakes that everyone has to make in order to learn how to communicate effectively.  You have to be prctically superhuman these days to learn to communicate while keeping your communication system intact long enough to learn the lessons that everyone else is allowed to learn.

TL;DR:  People who communicate in standard ways can get away with lying, fantasizing, exaggerating, manipulating, and all kinds of other things without having their entire communication system threatened to be taken away.  People with severe communication impairments can’t get away with these things even long enough to learn how not to do them (because everyone learns how not to do them by practice, pretty much, we’re not all just born knowing not to do these things).  And that’s horrible, putting so much at stake for such little mistakes that everyone makes at some point in their lifetime if they communicate in words at all.

57 notes

4:38am October 12, 2014

If you have even a chance of being nonverbal in public, you should have one of these at all times. They are as low tech as a letter board can get: one side the alphabet and some useful phrases like “start over”, “repeat”, “yes”, “no”, and “stop”. The backs come in several versions but the ones I haven’t lost yet, have a blank back that you can use to put communication stickers on, with a word and a symbol. Seriously these are important, especially if your main communication device craps out.

These are made of sturdy plastic but you can make them at home with any materials and laminate it if you can handle the glare. You can even track your most frequently used words and phrases and build a communication board out of those. And you can build as many as you want, saying as many things as you want. You don’t need picture symbols either, you can make it out of pure text if that’s your thing. For me, even if I’m not getting meaning out of the pictures, they somehow break up all the words and make it easier for me to communicate. I’d be curious to know why that works in someone with such severe visual processing issues.

One of my friends uses a Ouija board as their low tech aug comm device, as a private joke against those who think FC isn’t real. Not many people get the joke, I imagine. :-(. But it’s great you’d think it’d been tailor made for the purpose. For those who care about such things, the woman who gave it to them made sure to get one that hadn’t been used before. If you even slightly believe that energies or spirits are involved, I’d
advise caution. (I think it’s mostly the ideomotor effect, but there’s no saying some kind of invisible nasty couldn’t take advantage of that. Superstitious? Maybe. Playing it safe? Yep.

And no, I don’t think most FC users can be compared to Ouija boards, or Clever Hans (who was more clever than they gave him credit for), or other insulting and dehumanizing comparisons. I still remember the autistic woman who broke her ankle trying to run away from an asshole who disrupted AutCom by demanding autistic people perform like trick ponies. Such a demand was devastating to her and she reacted like anyone would when bring asked to make a performance to prove she’s real.

Simply the fact that she bolted away from this guy should show him she understood his purpose perfectly well. FC users are especially sensitive to bring made to perform because the stakes are their communication itself, it can be taken away as easily as it was given, and returning to silence after years of communicating has driven people to suicide before. But their suicides are only recorded as them wandering into traffic or not understanding what happens when you jump off a bridge. So the true suicide rate among nonverbal autistics is unknown, but when it happens the day your communication system, it’s painfully obvious. Not all those who “wander” are lost, and not all of them “just happen to wander” into traffic or train tracks or bridges or bodies of water.

Now imagine that you’ve gone decades knowing that you could communicate but not being able to get the words out. Then imagine someone shows you a way to get the words out. At then imagine that just as you’re getting used to this new life, someone takes it all away from you, saying its a hoax or that you are a trick horse or that your hands are the planchette on a Ouija board. That could drive lots of otherwise emotionally stable people to euicide, and people who have been without communication for years are often not emotionally stable.

Now imagine that you can keep your communication device and your method of accessing it, but you’re living with the constant threat of it being taken away. A die hard behaviorist signs up for your conference and starts demanding Turing tests of all the FC users. You going to run the other direction and break a bone falling off the stage, hoping he won’t notice you? Right again, and this man had no remorse because he thought he was saving the poor little oppressed autistic people from people exploiting us. The fact that we stuck by the facilitators for the most part, and tensed up, lost verbal skills, or ran away from the behaviorist, says everything.

There are huge problems in FC, and even FC users will admit this when they aren’t feeling pressured to perform perfectly. I’ve gone over a lot of it in my #FC tag:

http://withasmoothroundstone.tumblr.com/tagged/fc

But this is not how you approach it. You don’t do it by antagonizing FC users. Ever want to know why many FC users are full of praise for their facilitators to a degree that feels wrong – overblown, disproportionate, even dishonest? It’s one part sincere gratitude, and s thousand parts fear that if they annoy the wrong person they won’t be able to communicate in words anymore. Think about that. Think about your communication being based on someone’s whim. Even FC users with the best care spend most of their day unable to communicate because nobody is around or willing to facilitate. This means ingratiating people becomes a survival skill. Then facilitators mistake that ingratiating attitude for a wonderfully spiritual one, or as showing forgiveness above and beyond the call of duty. Sometimes maybe. But when I see it, I can see the fear coming off the person like waves. Terror of being lost to silence again for the rest of their lives. One of the worst things you can do to a person is give them something they desperately needed, and then take it away, even threaten to take it away. That’s how to create the most total despair known to humanity.

Anyway I didn’t mean to get sidetracked into FC, it just happened, but I’m putting it on my tag because it’s important stuff that very few people are willing to talk about.

By the way, I have been given Turing tests in public by strangers. I always fail, despite being normally a proficient ten finger typist whose speed tends to range from 100-160 words a minute, the higher figures being faster than I can translate ideas to language. I fail because I’m too angry to type (emotions affect cognitive, sensory, and motor skills in autistic people). I fail because being in the presence of someone who believes I can’t communicate, frequently renders me unable to communicate in words – this happened with speech when I had it, too, even more so than typing, but nobody ever mentions that. I fail because I feel stubborn and insulted. I fail because I’m so afraid of the stakes not for me but for the next nonverbal person they meet, possibly an FC user.

And if I fail Turing tests based on up much less, imagine the stress a person must be under whose entire future is at stake. Try to communicate under that much stress, I dare you. I was so impressed with Anne McDonald who, having to prove her competence to the court so she could leave an institution, and to prove her FC was real. They showed her three words with no facilitator in the room, then had the facilitator come in and help her type them. She got two out of three right, and the last one was only off by a couple letters – seemingly on purpose as a fuck you to the system, because that’s the kind of woman she was, full of hatred for a system that chewed her up and left her to die, then offered her freedom but only if she jumped through more degrading hoops.

People who’ve never been degraded in this manner may wonder what the big deal is about typing a few words. Aside from all I’ve said about stress and motor skills, among people with any severe motor condition including autism and cerebral palsy. There’s the fact that you’re being constantly made to prove your existence in a way nobody else has to prove theirs. Even Helen Keller went through this when she accidentally wrote a story from memory instead of from her own head – people began to doubt that any of her communication was real. Having people doubt such a fundamental part of you leaves scars on your soul. You don’t trust them, you don’t want to trust them, you can’t afford to trust them. And so you do things like deliberately misspell words in high stakes situations… Just to prove to yourself that you’re still alive and in control.

Also a friendly reminder:

AAC, aug comm, augmentative communication, alternative communication. These are all words for things that let you communicate without speech.

Assisted typing is any form of typing where a person needs assistance to access the letters or pictures on the AAC device.

Facilitated communication or FC is a controversial form of assisted typing. I believe it’s sometimes real and sometimes not, I’ve seen both in action, and getting it wrong either way can be devastating. But FC is not another word for AAC, it’s a word for a specific training technique starting out with support at the hand, then fading back up the arm to the shoulder to the back until eventually you aren’t touching at all. Some FC users have gone on to type independently, speak independently, or speak the words they typed. I’ve known several personally and that’s why I know it can be real.

Rapid prompting method or RPM is a separate kind of training people with severe communication impairments to type or hand write. (They favor handwriting because it is much easier to prove it comes from the disabled person.). It has it’s own problems which I might discuss later.

But basically: FC and RPM are not just another word for AAC, they are specific forms of assisted typing and writing used in specific ways. They both have the goal of independence, but not everyone reaches that goal. Assisted typing is an umbrella term for all typing that requires physical or emotional support to accomplish. (Many people with autism have severe. Exposure Anxiety and FC helps them in ways that go beyond just motor support.)

80 notes

1:15am October 8, 2014

A long, long overdue (10 years) translation.

I had a meeting to go to.  It was an important meeting.  Things would be decided there that could set my life on a completely different course.  My anxiety was through the roof, and therefore so was my catatonia.  I could not type unassisted and I could only move in certain very specific ways without a good deal of assistance.  Luckily, I had two friends with me, two good friends, to provide that assistance.  But this isn’t about that.

This is about the pattern blocks.  I used to carry old wooden blue pattern blocks in my pocket.  They’re the diamond-shaped ones.  I’d hold them, click them together, they were perfect.  I’d had them since childhood, and they were absolutely wonderful.

Throughout the meeting, I kept handing my friends the pattern blocks.  It wasn’t just handing them over casually.  There was a sense of urgency to it.  They picked up on the urgency, but they couldn’t make head or tail of what I was trying to say to them.  

At which point they said possibly the most important thing you can say to a person who is nonverbal, has hard-to-understand speech, or otherwise having trouble getting across what they mean.

They said “I’m sorry, I know that whatever you are trying to say is important, but I can’t figure out what you mean, for the life of me.”

Even if I could have typed perfectly and quickly without laborious effort and having my arm held up at the time, I would not have been able to give them an answer.  Because the thing I was trying to communicate, is not an easy thing to put into words.

Sometimes it takes me years to put something into words.  Please note that the incident in question happened in December of 2005.  It is now September of 2014.  That means it’s been almost ten years, and this is the first chance that I’ve been able to communicate what I meant by something back then.

Please remember that, when you tell me that if I wanted to, I could make words out of my thoughts.  Please remember that, when you tell me to hurry up and communicate something.  Please remember that, when you tell me that I’m lying when I say I can’t condense my long posts into short posts without a good deal of effort, and often not even then.  Please remember that, in other words, any time you’re tempted to doubt that I have a severe communication impairment.  Being eloquent in words in some contexts does not remove severe communication impairments in other contexts, it only masks them.  And it only masks them for people who are inclined to believe that communication is a single skill that you’re either good at or bad at, rather than the convergence of dozens of skills that any given person can be good at or bad at individually, and whose skills can change day to day, hour to hour, year to year.

So here is what I meant:

I am here.  I am alive.  I am giving this to you because it is a part of me.  I want you to have a part of me with you because I exist and I am alive.  And you exist and you are alive.  And if you hold onto a piece of me, maybe we can make it through this.  I have held it certain ways, clicked it on certain surfaces, to show you its physical properties and how they interact with my own physical, emotional, and cognitive properties.  

I know that you are unlikely to be able to take all of that in.  I know that you are both ACs, but you’re not like me in certain ways, and my communication through objects is not intuitive to you the way it would be to certain people.  Hell, if I handed this to you in another context it could mean a totally different thing, and you wouldn’t know, and I get that.  But for now, I need a powerful acknowledgement of my existence.  I need to burn so bright during this meeting that they won’t be able to ignore me.  I am scared.  I am scared and I am asking for your help.  I am asking to be distributed among more than one person, so that together I can be more than I am as one person.  And I am asking you to see your connection to me, to see me, to see me at my core, where the fire burns, where our fires can burn together.  

I am asking you to see who I am, reflected in the way I handle this pattern block, and the way I hand it to you.  I am asking you to see me.  I am asking you to shield me when I need to be shielded.  I am asking you to help me find words when the words are not there for me.  I am asking you to help me when I need help.  I am scared, I am asking for your protection should anything go wrong.  I am asking for you to stand in front of me should anyone start attacking me verbally or otherwise.  I am asking you to tell them what I am thinking, when I am unable to do so myself. I am asking you to elaborate on the very short answers I can give by typing slowly with support while my body is trying to freeze up.

There are people who would have gotten every word of that, just from the way I handled the pattern blocks.  The people I was with that night, could not.  They could tell I meant something important.  But they couldn’t tell what I meant.  And fortunately, they didn’t pretend to know what I meant.  People who pretend to know what I meant make communication impossible.  My friends were honest with me, and while they didn’t know what I meant, they helped me communicate and advocate for myself perfectly.

But now I can say what I meant.  So that’s what I meant.  And that’s how much information can be carried in a single set of seemingly simple motions with a pattern block, or a rock, or a stick.  It’s good to get to know what meaning an object has to the person, because that can factor in.  But it doesn’t always.  Sometimes an object has a specific meaning, sometimes that exact same object is a stand-in for something broader.  Everything depends on context.  And if you can’t understand, that’s fine.  Not everyone can understand this stuff any more than everyone can understand speech or language.  People more likely to understand are people who for any reason at all have been forced to use highly nonstandard ways to communicate at some point in their lives.  The longer they’ve had to, the more likely they’ll get it.

So there.  That’s what I meant nearly ten years ago.  Please don’t tell me how easy I find communication.  I may be good at it once I get there, but getting there is a long, tortuous journey sometimes.

TL;DR:  Sometimes it takes me a long time to communicate something.  About ten years ago, I handed my friends some pattern blocks in a way that had a lot of meaning to it – during a time when I could neither speak nor type.  They didn’t understand the meaning, and told me so.  I was unable to convey the meaning until today.  That’s how long it can sometimes take me.  Or longer.  I wonder how many times autistic people do things like this and are treated as if we have no communication at all.   I’m lucky I can claw my way into words for long enough to talk about this stuff.

85 notes

11:01pm October 7, 2014

The Best Type Of Friend

I love you because
I can walk into your room
Talk to you for hours
And you don’t even notice
That I haven’t said a word
And that I left my talking computer
At home again
By accident

[Also posted at my main poetry blog, which has a comments section.]

Keep reading

40 notes

10:46pm October 7, 2014

Tone of voice

I’m functionally nonverbal, meaning basically I can’t use speech for communication on any reliable level whatsoever.

I use a keyboard to communicate.  It has a mechanical voice.

Sometimes I type things into it and it says them out loud, in its mechanical voice.

But when I remember back to what I typed, I remember it with a totally different voice, with inflection and everything.  Like really, really obvious inflection that was absolutely not in the computer’s voice.

My friends often hear inflection too, but they hear it differently.  They don’t hear it in the actual words, they hear it in the way my hands sound on the keyboard.  They say they can identify that it’s me just by my typing style, and then identify my mood pretty well by the rhythm and intensity of my typing.  But that’s an entirely different kind of tone.  One of my friends coined the term “tone of type” to describe that.  She says she can especially tell when I’m royally pissed off by the way my hands hit the keyboard really hard, but she can also tell much subtler things too.

102 notes

8:36pm October 5, 2014

Nonverbal Problems #239138

So I’m not looking for advice, or what I could’ve done differently, or what I could do to prevent this in the future.  I’m just trying to tell you what happened.

So I’ve started attending a class for caregivers.  I count as a caregiver, they say, because I give emotional support about the dying process.  And I promised not to talk about anything that actually happens in the class, because confidentiality.  But this isn’t that sort of thing.

So I left to go to the bathroom, around the corner.  This means going out the door to the conference room, through a small library, out the library doors, around a corner, into the bathroom.  Emptied my drainage bag, which had suddenly filled to the point I was scared it was going to burst.  Got everything cleaned up, went back.

Library doors are locked.

There’s a lady at the information desk.

There’s a guy at a podium thing by the information desk.

It is my job to convince them, using nothing but grunting and body language, that I need to go into the library, which is locked.

And they don’t believe me.

I point to the sign about the caregiver support group.

I’m walking with a cane, i’m nonverbal, and I’m wearing an oxygen tank, as well as a hospital admission bracelet.  I don’t look like a caregiver.

And ever since I stopped using a wheelchair people see me as less cognitively competent.  The wheelchair tells them my disability is physical and that all the weird things I do are somehow tied to a physical disability.  Minus the wheelchair, they assume those things are from an intellectual or other cognitive disability.  Which, actually, they are, they’re from autism, a developmental/cognitive disability.  But yeah.

So anyway even the security guy with the key was questioning my right to be there, but we did get it figured out in the end.

TL;DR: When you’re nonverbal and look cognitively disabled it’s sort of dangerous to be anywhere alone because even if you get your point across by grunting and pointing and crap, people won’t believe you actually belong wherever you are, or that you’re competent.

55 notes

8:56pm October 1, 2014

The words of a group of autistic people who learned to type using the Rapid Prompting Method (RPM) – what Tito Mukhopadhyay was taught by, except it doesn’t involve hitting people anymore (which is actively discouraged by the same woman who did hit Tito in the course of his “training”).

I always notice that parts of the autistic community that are more connected to the general developmental disability community, and are more likely to have been labeled as intellectually disabled as well as autistic, and those made up largely of those labeled low functioning, are far more racially and ethnically diverse than the “AS/HFA communities” (in name or in practice) that I’ve found online and offline.  The diversity in this video mirrors the diversity in my special ed school.  I don’t know what it is about the “high functioning” communities that attract so damn many white people and shut out so many people of color, but the “low functioning” autistic communities don’t have that problem.

Also please note that nobody is obligated to enjoy being autistic, especially if their main experience of being autistic is being trapped and unable to communicate their thoughts for years or decades when they have thoughts as complex to communicate as any “high functioning” person.  Lots of people who’ve gone years or decades with no communication system are highly ambivalent about their autism at best, and with good reason.. Not everyone, mind you, but that is a serious hardship to have to take on, and it’s not the same as having your speech shut down sometimes.  It’s never, ever being able to say anything important, even when it’s super important, even when it’s life and death.  And the people in these videos are the lucky ones for whom RPM was successful.  There are plenty of people who won’t ever learn to type or speak, and some of them are okay with that and some aren’t (judging from the words of people who were once in that category for a long part of their life and then came out of it).

Anyway, I’m glad this video was made.  All the words in the video are printed, not spoken.  They’re either superimposed on the screen, or writteon on boards.  So it’s not blind-accessible, and I don’t have the spoons to make a transcript.

And I’m reminded once again why autistic communities comprised mostly of nonspeaking people and people who’ve been in the DD system, tend to be more welcoming to me than other communities:  They’re more diverse.  Racially, ethnically, class, sexuality, gender, everything.  And that makes it so there’s a much wider space for me to make into my own, in these communities.  Even if they’re still not quite ‘home’.  And even if I still don’t quite fit because my life story isn’t the one people expect of a nonspeaking autistic adult.  But still.  Things like this make me ache for community.

Just where I can fade into the background.  That’s what I wish I could do.  Fade into the background, not be a big name, just be me, just be me around people who can mostly read me even when I’m not typing.  I’d love to find a community where nobody spoke and nobody typed for certain periods of time, whether they were ever capable of it or not, and nobody saw it as “Oh no people are overloaded we have to Do Something about this, it’s bad!”  People would just see it as “Words are tiring and we’re not made of words and we want a break from words.”

Of course RPM often doesn’t allow that, at least during training sessions.  They’re very big on not allowing autistic people a moment to process things, just shoving them to the next level as fast as they can.  And it works, and I know exactly why it works, and many autistic people would gladly take that temporary tradeoff in order to learn to communicate in words.  But many autistic people also need time away from words and that needs to be respected too.

TL;DR:  I like this video.  It’s by several nonspeaking autistic people who learned to type using the RPM (Rapid Prompting Method).  I have my misgivings about the RPM but it does get results and those can be life-changing for those it works for.  I miss communities (like AutCom) that form around autistic people who mostly haven’t been considered 'high functioning’, there’s a definite difference in diversity and in how welcoming they are to someone like me, versus the less diverse and less welcoming “AS/HFA communities” (whether they call themselves that or not, that’s what they are).  I guess the perfect community for me would be the “I fluctuate between categories and eat their remains for breakfast” community but I haven’t found that one yet.  Love the video.  Keep them coming.  All the words were written by autistic people.  Until someone makes a transcript, this is Deaf-accessible but not Blind-accessible.

246 notes

10:36am September 26, 2014

Words Are Just A Carrier Wave

All you have to do is think of me
And all my love is there
All you have to do is look at my face
And all the unspoken things
I want to tell you before you die
Pour out of me and into your mind

All I have to do is think of you
And I see so much of you I’ve never seen before
All I have to do is look at your face
And all the things you can’t remember
All the things your brain won’t let you say
Are written there as if in ink

Everything we are is written on each other
Everything we need to know is there
There’s nothing more we have to say, in a way
Because everything is written on our souls

I can see you right now
Three thousand miles away
I see the light that shines inside you
I see the love that holds your body together
Even as it’s failing

That love will hold us up as you die
That love won’t disappear
No matter how bad it gets
That love is turning you into light
Even now I can see it
Turning you into light
Three thousand miles away
The love you have taken on
Is slowly turning you into light

You told me not to grieve too hard
Which is a tall order
When losing a father for the first time
But when I close my eyes to look at you
Every day I see the light shine through
Even more than it had before then
Even more than it had before

You’re becoming translucent
Your skin is just a place
For the light to shine through
For the love that has carried us this far
To shine through you and around you
I see it more every day
And there’s not a lot I can say
Because it’s already been said
And we can read it
In the love
On our bodies

“Words are just a carrier wave”
That’s what my friend Anne would say
When faced with situations like this one
But I have some memories
I want to share before you go
And maybe words will serve their purpose

I remember sitting with you
And listening for owls in the redwoods
On our back porch

I remember granite mountainsides
Heated so much by the sun
That you could smell the rock itself

I remember picking up and counting
Every salamander
On a hike from the skyline to the sea

I remember hollow logs so big that
Even adults could stand inside them
And marvel at the fungal growth

I remember picking wild blueberries
While you made pancakes out of them
Then let me ride on your shoulders

I remember playing with your beard
When I was too young to understand
Just about anything

I remember catching more fish
Than any of the rest of you
Because I liked the repetition

I remember feeling proud
When you taught me how to gut a fish
Like I learned something truly useful

I remember the glee I felt
Sorting your tangled pile of resistors
Thinking it was a game, not a chore

I remember the fresh smell of your sweat
After you came inside
From splitting wood

I remember how proud I felt
When you taught me to split wood
All by myself

I remember when I talked like you
You’d smile and call me
“My lil’ Suthun gal”

(Whenever I could be like you
My heart would burst with pride)

I remember when you took me on creek walks
With our shoes and pants on
And the water splashing us all around

I remember when you showed me
An entire wall full of electronics
And then told me, “I made this.”

I remember going to work with you
Getting to meet all the other technicians
Was better than meeting the famous physicists

I remember always stopping during a hike
At one particular spring
To make lemonade

I remember all your sayings like
“Bear food runs from bears” and
“I’m just as fine as frog fur.”

Thank you
For getting so depressed when you were drafted
That you ate too much and accidentally got too fat for the Service
(Or I might not exist.)

Thank you
For not using protection
In the woods in Henry Coe
(Or I wouldn’t exist.)

Thank you
For getting out of that snowstorm
When you hallucinated me saying I needed you
(I did. I do still. I will always.)

Thank you
For living in Redwood Terrace
When I was born
(Or I’d be a completely different person)

Thank you
For letting me hit you in the back
So I wouldn’t hit the ER nurse who had his hand up my butt
(That’s a true father)

Thank you
For forgiving me
For everything I put you through
(I can’t imagine raising me)

Thank you
For learning anger management
And then passing on the knowledge to me
(Because we both sure needed it)

Your love brought me life
Your love holds me up
Your love is everything to me
And now that you’re leaving
Love will cover us all
And love is all you will be

I will watch for your love in the stars
I will watch for your love in the sea
I will watch for your love
In the soil and the rocks
And in the sun’s light
That shines over me

But right now all I have to do
Is look at your face
To see the light shining through
And right now all you need to see
Is the love in my face
Shining right back at you

[Also on my main poetry blog.  Where my dad has actually responded.]  

11 notes

12:23pm September 11, 2014

How ordinary people talk about oppression.

If you want the poem version of this, try Inside the Pauses of Ordinary Conversations.  This is the long, detailed version, for people who want more details than poetry can provide.  There’s a tl;dr at the end.

Note:  This is all from my experience.  I shouldn’t have to say that, but I feel like I should note that in bold letters because this is how things are in my neighborhood, in my world, in my conversations, in the conversations I overhear, in the conversations I participate in.  

EDITED TO ADD: IMPORTANT: IF YOU’RE SOMEONE WHO CAN’T DO SOMETHING A CERTAIN WAY, OR HAS TO DO THINGS A CERTAIN WAY, BECAUSE OF A DISABILITY, I AM NOT TALKING ABOUT YOU.  I am talking about, largely, people who haven’t listened because they didn’t know there was anything to listen to, not people who can’t listen because they can’t do nonverbal cues, for instance.  And I’m talking about people who use jargon as part of a system of looking down on people who don’t, not people who use jargon because that’s the way their vocabulary works.  And so on and so forth.  So if you see something in this that you can’t ever do because you’re disabled, you’re not who I’m aiming it at.

When ordinary oppressed people, talking to each other in the offline world, discuss oppression, it’s different.  It’s not what you see most often online.  There’s not a lot of obvious analysis.  There’s not a lot of academic language.  We talk about right and wrong in a very blunt straightforward manner, and a lot of things are left unsaid, but deeply felt.

The things left unsaid but deeply felt confuse people whose main introduction to discussions of oppression are through books, or online blogs, or classrooms.  There’s this sense that in order for something to be made real, it has to be openly stated, out loud, in obvious language.

And that’s just not how it works.  I wrote my poem because that’s not how it works, and I wanted to show how it works.  And how it works is a lot more like poetry or storytelling than it is like academic analysis.

We talk about real, concrete things that have happened to us.  But we don’t just rush through the story, as if we have the whole thing typed out in our minds ahead of time.  There are a lot of pauses, and the pauses are as significant as the words, if not more so.

The pauses are where all of our voices get to be heard.  The pauses are where we react to each other.  The reactions can be verbal or nonverbal, but they’re often completely nonverbal.  A sharp intake of breath.  A hand on the person’s arm.  Eyes widening, head pulled back.  Narrow eyes, drumming fingers.  A hand thumping the table.  Hand pressed to chest in disbelief.  Slow shaking of the head in disgust.  Nodding.  Twenty million tonal variations on “uh-huh” and “nuh-uh” and “huh?” and  and other grunt-words.  Lots of different hand gestures.

And these aren’t isolated gestures and sounds.  When taken together, they look like a well-choreographed dance.  Each person is reacting both to the storyteller and to each other.  All at once.

And these reactions are ways of showing that we understand.  That we understand why what happened was wrong.  That we understand who was in the wrong.  That we know what we would want to do to the person in the wrong, if only our conscience or society would let us.

Sometimes there are actual verbal discussions about taking action.  They’re not always serious.  Sometimes they’re a way of blowing off steam, of saying, “Yes, if we had all the time and money in the world, if we thought it would succeed, then we could do this.”  Recently there was talk of a petition in our building, but nobody was serious about it.  We just wanted to feel like we would do something if we had the chance, that we weren’t completely powerless.  We knew no petition would ever surface, for a million good and bad reasons alike.  

But sometimes the action does turn into real action, too.  It’s just that when you’re poor, elderly, and disabled, you have to pick your battles because you just don’t have the spoons to fight every single one.  So sometimes, talking about fighting back reminds you that you could fight back, maybe, and sometimes that has to be enough.

There’s a lot said through nonverbal means, and that can be hard for anyone who has trouble reading nonverbal cues.  There is far more said through tone and body language than is ever said through the words alone.  If I gave you a transcript of some of the conversations we have around here, you might not even recognize they were about oppression, unless you heard the music in their voices and saw the dance within their movements.

I’m a weird autistic person because I do better hearing the music and seeing the dance than I do hearing the words.  So often, I’ll pick up on all this nuance, things I can’t even translate into words because it’s so subtle and detailed, and I won’t hear the words at all.  Autistic people tend to swing one way or the other — hearing words but not tone, or tone but not words, or switching between the two.  My baselines tone without words, but I can switch to words without tone if I have to, sometimes anyway.  I just wanted to explain that because most people assume that all autistic people are pure words-but-not-tone people.  Even Temple Grandin has said that she can do one or the other, just not both.

I may see the dance, but I can’t both see it and participate in it at the same time.  I can either participate in it but be blind to a lot of the dance happening around me (and do the nonverbal equivalent of stepping on people’s feet a lot), or I can be acutely aware but unable to participate beyond the most rudimentary ways.

But this dance is so important to how ordinary people discuss our oppression.  Because we discuss our oppression as stories.  We don’t discuss it in abstract terms, we discuss it in terms of “This is what happened to me today,” “This s what happened to my cousin last month,” and these stories get woven into a tapestry that we remember about each other, a tapestry of discrimination and oppression and how it affects us on every level.  

The emotional responses people give at first are meant to say “I understand that this was oppression and I understand how awful it is that this happened to you.”  There’s a lot more nuance to it than that, though.  There always is, with body language and tone of voice.  You can take a single syllable sound, like “uh”, and turn it into a hundred different emotional reactions by adding tone of voice and body language.  And in these conversations that’s exactly what people are doing.

But they’re not just doing it to the storyteller, they’re doing it to each other.  They’re bouncing their reactions off each other and seeing how the others are reacting, adjusting the tone and pitch of their reactions accordingly if necessary.  This all happens very quickly. 

That part, where everyone is reacting in the pauses, reacting to the story, reacting to each other.  That’s one of the most misunderstood parts.  That’s where the analysis would be if people were coming at it from an academic angle instead of an emotional one.  But since it’s an emotional one, what you get is a lot of sincere emotional responses, with so much layer and depth to them, that it would be very hard to communicate all of the information in words.  It’s a very dense, multilayered mode of communication.  And I always feel amazed when I get to witness it.

Stories also get traded.  A man tells a story about himself.   After all the right pauses and responses in all the right places,  a woman talks about something that happened to her cousin the other day.  Pauses happen, responses happen, stories happen.  People build up a sense of their own oppression without a piece of jargon or a buzzword in sight.  This is ongoing, throughout our lifetimes.  In many cases, we start learning very young.

I go to the emergency room and have a bad experience.  On my way out, the cabbie driving me home tells me he used to be a janitor there.  He tells me how on many shifts there was a culture where doctors and nurses looked down on everyone else, from patient to janitors.  He had to quit.

Another day at the ER, another bad experience.  This new cabbie tells me about when he had his heart attack.  He had no insurance.  They stabilized him but refused to help him get set up with preventative care.  He asked, “What happens if I have another heart attack?”  The doctors said, “It won’t matter to you, will it?  You’ll be dead.”  The cabbie is still, to my knowledge, uninsured, and has been given no preventative care and no means of preventing another heart attack.

These are the stories that ordinary people spontaneously tell each other.  They are real.  They are straightforward.  They have pauses in all the right places.  They tend to have a stark sense of right and wrong.  There’s no buzzwords, I’ve never, ever heard an ordinary person on the street tell me a story of oppression and then complain, “Whenever I talk about my life, someone accuses me of using SJ jargon!”  

Because that’s not how we talk about our lives or our oppression.   We talk about good and bad, right and wrong, sometimes even downright evil, but not heteronormativity.  And if you tried to insert words like heteronormativity into the discussion, you’d get responses like confusion, mistrust, laughter, and disgust in about equal measure depending on who you were talking to.  Words like heteronormativity are most often, in ordinary-people circles, ways other people have of saying “We’re better than you and smarter than you and we know it.”  Even if that’s not your intent, you’re going to get read that way, a lot.

In developmental disability circles, things are a lot the same as they are among any other group of ordinary people.  One thing that strikes me about the DD community in general is how ordinary most DD people within those communities are.  And by ordinary I don’t mean something bad.  I mean that we’re a group of people who’ve had everything, even our right to call ourselves human, stripped away from us, and we still manage to cling to the most important parts of being ordinary human beings:  Compassion, love, and community.  This isn’t because we’re too stupid to know better.  It’s because we’ve worked hard, really hard, to maintain our humanity in the face of some of the worst dehumanization out there.  And maintaining your humanity, maintaining your ordinariness, those things go hand in hand most of the time.  We need to be profoundly ordinary in a way most people don’t need it.  And we cling to it like a life raft in a sea of chaos.  And there is profound beauty, profound dignity, to be found in those who have had everything taken away from us and still managed to be ordinary.  Ordinary should never be a dirty word, or a substitute for normal, because it is neither of those things.  

When ordinary DD people talk to each other, sometimes it’s the same as when ordinary non-DD people talk to each other.  But sometimes it’s different.  Sometimes we pause for longer, not for responses, but because we can’t find the words we’re looking for.  We’re even less likely to use jargon than the average person, unless we’re deliberately trying to show off that we’re not as ignorant as people think we are.

But what’s really different for us is what happens in the pauses.  I guess it might not be noticeable to everyone, but I notice it a lot.  When we react, we react a little more strongly than usual, like the tone and expression is slightly exaggerated.  Because a lot of us had to learn these expressions consciously.  And while there’s still that dance between all of our different reactions, it can be a little bit off-beat, with the reactions slightly less coordinated than they otherwise would be.

But the basics are still the same:  Ordinary people talk about oppression in stories.  We don’t necessarily analyze it out loud, that all happens in between the lines, during the song and dance of responses during the pauses in the story.  And I’ve said before we talk in poetry.  What I mean is the pauses.  We pause at the end of a line, and that’s where everyone responds.  And the responses take the place of all the analysis that people online are always doing.  The mostly nonverbal responses say, “I know what this means to you,” and “I understand,” and they build a sense of community between the people having the conversation.

And as I keep saying, community is the important thing in all of this.  Community means practical compassion and practical love.  It means being there for each other, even in cases where we don’t even like each other.  And that’s the edge we have, the communities of ordinary people who meet and tell each other stories and react to these stories.  Our ways of interacting are just fundamentally different than what you usually find online in “communities” built entirely around oppression and analyzing oppression.  Because those of us offline aren’t usually meeting to analyze oppression, we’re meeting to connect with each other as human beings.  Which does involve talking about what happens to us, but it involves a lot more than that, too. 

So when I wrote that poem… I was trying to show in a very visceral way, what happens when groups of ordinary people offline happen to start telling each other stories about oppression.  The way the communication is so dense that volumes can be conveyed in a glance or a word.  The way we tell stories.  And I think, especially, the way we deal with right and wrong.

Because for us, it’s very stark, “That was wrong.  That shouldn’t have happened to you.”  That’s all.  And it might be conveyed with a glance, or rolled eye, or a grunt.  Our communication in these situations is very economical, yet layered with meaning.  And the dances between people in the pauses remain the place where the most communication takes place.

Yes, this can be very hard for people who don’t come by this kind of communication naturally.  Some autistic people have a really hard time even noticing that this communication exists.  And there are people whose class background or culture makes it harder for them to recognize or participate in this kind of communication.  Especially people who have been brought up to talk everything out, to turn everything into words, to analyze it, to make sure that everything is explicit.

Because for most people, our discussions of oppression are implicit.  They’re all about what happens in the silences.  And the silences are filled to the brim with meanings and messages to each other.  We aren’t stupid.  We aren’t ignorant.  We aren’t unaware of what’s happening to us.  We just talk about it differently.  What we have is a major cultural divide.

So if you’re not used to this kind of communication — next time you are in the offline world, and you’re part of a group of people telling stories about their lives… listen, really listen.  Don’t say anything, don’t respond to anything.  Just pay attention to everything and everyone around you.  Pay attention to people’s movements, to the sounds they make, to the way each person’s movements and sounds relate to every other person’s.  Pay attention to the rhythm of the conversation.  Pay attention to the way people talk about right and wrong, good and bad.  

Pay attention.  That’s the main thing.  Pay attention, have some humility, learn that ordinary people are not stupid or ignorant about our own oppression just because most of us don’t analyze it the same way you do.

TL;DR:  When ordinary people, in the offline world, discuss our oppression, we do it differently than on tumblr.  Mostly, we tell stories about our lives.  We trade stories about what has happened in our day.  During those stories, we pause.  During those pauses, we have an entire song and dance of nonverbal responses that convey everyone’s position on the matter without anyone saying a word.  These are the conversations I have when I socialize with people in my building (which is for poor elderly and disabled people), or other clients from the local developmental disability agency (which is for people with intellectual disabilities or autism).  It’s all about the stories, the music, the dance in the silences.  We understand oppression as deeply as anyone who’s analyzing it on tumblr.  We just don’t talk about it the same way.  We aren’t stupid, we aren’t ignorant, and we aren’t missing out on your wisdom.

34 notes

8:26pm September 10, 2014

Inside the Pauses of Ordinary Conversations

When ordinary people talk
We talk in poetry
With long pauses between the lines

Long pauses
Pauses long, and longer
So that all the other information
Has a chance to sink in

When ordinary people talk
We talk in stories
Not in academic analysis

“This is what happened the other day
To my wife’s sister Molly
At the Walmart —
You know Molly
She can’t do the sound of the cash register
.
.
And every register going off at once!
And she was plugging her ears
And crouching low to the ground
And people were staring
You know how it goes”

And another long pause
.
.
.
.
.
Filled by rolled eyes
And barely controlled anger

But mostly
Just a pause
.
.
.
.
Where everybody speaks their piece
Without saying a word

And only after that long pause
This long pause
Here
.
.
.
Only then can the conversation move on

Most of the conversation takes place
Inside the pauses
Where people have time
To think and feel

It’s not a wall of words
Nobody has to say out loud
What we know everyone is thinking

Nobody has to explain
How mortified Molly was
To have a meltdown in the Walmart

Nobody has to analyze
The ableism in people’s stares

Nobody has to explain
Why they are so angry
That this one part of the world
Has to be so hard

“Molly went home and
She couldn’t stop throwing up
She stayed in her room all day
And came out pale, sweaty, and shaking.
At least she had her cat
That cat never left her side.”

Another long pause:
Nods of sympathy
Head shakes of disgust
Eyes rolling at the world at large
Grunts like “uh-huuuuuh”
More tone than verbalization

Like Molly, I am autistic
I have learned the rules of conversation
Only with the greatest effort
That people don’t always like when you
Act like a bulldozer full of words

But it has been worth the learning
Because the bulldozer full of words
Split my brain at the seams
And wore me out before it wore anyone else out

The pauses give my brain room to breathe
Being quiet lets me listen
To the music of their speech
The pauses let me watch
The dance of their bodies
Not one by one
But as a group
Each movement
Reflecting off the movements of another

The music and dance
Are my private view on the world
They let me see things
Others don’t see
Understand things
I could never explain
But the music in their speech
And the dance that hangs in the air
Between their bodies
Tell me everything I need to know
And more

So I have learned that
When ordinary people talk
They talk in poetry and stories
And their hands and eyes dance
To a song of emotion that can only be heard
In the pauses

I may be autistic
I may hear the pauses differently
But I still hear the music
I still see the dance
Even if it’s not quite the same
Music and dance
Everyone else sees

Either way, I know
The rhythms and the tones
The movements and the stillness
That only show up in the silence
I may miss the words entirely
But I don’t miss the music or the dance

And those silent pauses
.
.
Filled with music filled with dance
.
.
.
Are the most important
.
.
.
.
.
Part

.

.

.

.

.

.

[If you want a more detailed discussion of these things, try my post, How Ordinary People Talk About Oppression.]

21 notes

4:24pm September 2, 2014

For my nonverbal verbal friend

[I have a friend who is partially verbal.  She can speak at certain times, on certain occasions, on certain topics, to certain people.  The rest of the time she types, or does other things.  But she is so much like me, and her speech strikes me as so disconnected from who she is, that her voice startles me every time I hear it.  I wrote this poem about my confusion, about how my instincts tell me she’s fully nonverbal and my brain goes WTF if I hear her voice.  As with other poems, even if it’s about one person, I’m sure there’s lots of others who can relate to it.]

When I hear your voice
It startles me
It’s a voice coming out of someone
Who was never meant
To communicate by speech

It’s a voice that sounds so distant
That I know you are at the back
Of a long tunnel

The machine that makes your words
Doesn’t always bother
To connect them to your thoughts

And I hear the distance
I hear the echoes made by the cave walls
At the end of the tunnel
I hear the echoes in your mind
I hear the echoes of books
The echoes of people
The echoes of echoes of echoes
That have formed the falsehood
That is your speech

Your speech is an elaborate lie
It’s a con job your brain pulled on you
When you were too young to resist
Your speech tells others,
“I am one of the worthy ones.”
Your speech rips your brain apart
But nobody notices but me

Mary Margaret would call you
One of the silent ones, now given a voice
And you are one of the silent ones, like me
It’s just nobody can see it
Because nobody understands what it means
When they hear words come out
Of a mouth that should never have been used

But I know what it means
Oh I know what it means
And my heart aches

I know it means endless hours of repetition
I know it means chewing up books
And vomiting them up
While nobody realizes
You’re not talking, you’re being sick!
The bile hurts your throat
But you do it anyway
You have no choice

I know it means a feeling in your brain
As if your brain is about to shatter
I know it means losing everything meaningful
About the way you perceive the world
As every ounce of energy
Is diverted to making mouth sounds

I know it means terrible pain
And never enough payback
To make it worth your while

I know it means fear — sometimes terror
Of what would happen to you
If you stopped talking
The way your brain aches to do
Every time you open your mouth

I know it means that you don’t type
As often as you should
For fear of social consequences
For fear of being accused of faking
For fear of being taken advantage of
For fear of getting hurt in a million ways

When I talk to you
We communicate as naturally as we can
As much like we were born to

We type, but we use the words
Like a carrier wave for something deeper
We never speak except to make emotion sounds
Our fingers flicker at each other
In our own private language
That our bodies made up between each other
On the spot
Every time

I sometimes get inside your head
See the world through your eyes
As you look out at me
And I see myself through your eyes
Looking back at me
With your eyes behind mine
And my eyes behind yours
That is how intimate we are

You can’t be verbal
It doesn’t make sense
Even when you speak
You don’t sound verbal

And you know all the secrets
That nonverbal people learn
To communicate
When we can’t speak

There’s more than one way
To be nonverbal

You strike me as nonverbal
Because your problems with speech
Prevented you from communicating well
Even when you can talk

And to me, what matters is not
What sounds you can make
Coming out of your mouth
Like a dog-and-pony show
For everyone to see

What matters is:
Can you communicate your thoughts?
Can you do so with any consistency?
Can you communicate about things
Beyond superficial descriptions of events?

If you can’t do those things
I have a hard time calling you verbal
I know I’m supposed to
I know it’s supposed to just be a word count
But a word count is just quantity
Whether you’re verbal or not
That’s quality

And
Your
Speech
Lacks
Quality

In too many ways to count:

Your voice is so distant
It sounds like you’re in a cave
Your words only attach to your thoughts
By random chance
And by three decades of nonstop effort
To mold your brain into shapes
It was never meant to take
One minor setback
Can make the whole thing collapse

And people would be so surprised
Because they don’t see
That you were never meant to be verbal
Which means they are surprised
When you don’t speak
And I am surprised — so surprised! —
When you do

You have pieces of fabric
That have been stitched together
The wrong way around
And people only see
That the fabric exists
They don’t see it going
Against the grain

But you know the things
That only nonverbal people know
You know how to communicate
Without the use of words or gestures
You know how to tell
When someone else is doing the same
Your tongue may sometimes be verbal
But your brain is not

So every time you utter words from your mouth
I am shocked and surprised
Every time
Without fail

Because everything else about you
Says this shouldn’t be possible
Everything else about you
Says your speech is a mirage
Water painted on the road
That disappears
When you get close
Or try to touch it

But you can communicate
From the depths of your soul
Without making a sound
And that is where
The real water
Can be found
Clear and deep

So I will stare into the depths
Of that clear and deep water
And I will refuse to countenance
Any mirages that come by
Claiming you are verbal —
I know you better than that

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