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Emergency speech is dangerous.

I’ve mentioned that I’ve had some recent apparent improvements in my speech, including what I’ve termed emergency speech. I’ve described that before, I don’t have the brain energy to put into words what emergency speech is, while also making this post as well.

Emergency speech is dangerous to me.

It may not even be worth the times it has allowed me to speak during medical crises.

I’ve had intermittent speech for a little while now.

And I thought it was okay. I was wrong.

I was so very, very wrong.

Here is what other people have said, people who don’t even know each other, people who don’t understand my neurology in particular, people who have no reason to all be saying the same damn thing.

Which is.

When I speak it’s as if I’m an entirely different person. That person is not a very likable person in comparison to how I normally am. That person bears no resemblance to the person I normally am. Sometimes, people think it’s who I am. Then they see me on a day when I’m typing, and it’s like they’re getting to know me for the first time. And when they see a day when I’m typing, they get it, immediately, that speech affects every single other ability I have. It mangles them. It cannibalizes the rest of my brain to allow itself to exist.

And it doesn’t just do this while the speech is possible.

If speech is impossible, this weird language program stays on.

The entire process — both when speech exists and when it doesn’t — the best analogy I can come up with is that it’s like that one browser window. Where this one window is slowing down your entire computer to a halt. It may have already crashed and rebooted your computer several times. And yet you need this webpage for something — maybe online banking — that you can’t do any other way. But no matter how much you need it, eventually it becomes so destructive that the whole thing falls apart, and takes down a lot of other crap with it.

And just like in the world of people, this computer analogy also includes the fact that the computer crashing and slowing down affects everyone who needs the computer to be working. It does not only affect the person using the computer themselves.

And as far as my experiences of speech and privilege go, it does gain me some kinds of privilege, but it’s not simple. It’s not like you have ‘speech privilege’ that’s a thing that either exists or doesn’t. (I don’t even think that way anyway, but lots of people do.) It’s way more complicated than that. And there are many times I’ve found that I’m actually treated better — sometimes when it’s a life and death thing — when I can’t talk, than when I can. There’s something about the way speech manifests for me that quite often results in treatment that is worse than I’d get treated if I couldn’t speak.

And I’m saying this as someone who’s had it declared in front of me that I have the “cognitive functioning of an infant” because I couldn’t speak. (Emergency speech, when it happens, is not voluntary, and neither is my loss of speech.) That’s one incident I’m recalling, but it’s happened to me countless times.

I knew something was wrong when my roommate called my best friend to get me to stop talking, and then my best friend told me she couldn’t talk to me unless I typed to communicate, and that our connection to each other was totally mangled by the presence of speech.

It worked.

My life is getting a lot better.

I can understand the world again more than I could before.

Things make more sense.

I can do more.

I feel like I’ve been shoved behind a wall and only now can come out.

And I feel stupid for having not noticed this was going to happen, even though it has always happened with speech for me, my whole life, even at my best speech, it has always torn through my life like someone put a tornado in my brain.

And it doesn’t just tear through my life, it tears through the lives of everyone who cares about me.

It makes me live as someone I’m not.

It makes me repeat words that have nothing to do with my thoughts.

Imagine that every time you go to say something, you say the opposite of what you intend to say, and that gives you just the tiniest idea of what speech is like for me.

I’m not talking about things that are harmless or just about feelings.

I’m talking about my entire life here.

Everything I communicate.

SPEECH IS A HINDRANCE TO THIS.

I’ve always had spotty, intermittent, weird, crappy speech even at its most fluent. Fluency is not the same thing as communication. You can be completely fluent, you can even sound as if what you have to say is a plausible response to a situation, and you can be saying nothing of what you intend to say.

How is that dangerous?

Say you’re in the emergency room with something serious and that is when speech pops in (which it usually is something like that for me, that starts it off) and only portions of what you say bear any resemblance to what you’re thinking, and you can’t switch it off or change it or make it better.

Say you have a broken bone and you know it and you can’t say it.

That’s my entire life.

Words aren’t liberation for me. They’re a trap. And by a trap, I mean like the kind with spikes that clamp around your leg and make you unable to move until someone comes along to kill you. I have no words strong enough for my revulsion to speech.

Because I’ve had ALL of the following in my lifetime:

  • Fluent-sounding speech that was communicative
  • Fluent-sounding speech t hat was not communicative
  • Non-fluent speech that was communicative
  • Non-fluent speech that was not communicative
  • Total lack of speech
  • Only echolalia (whether communicative or otherwise)
  • Carefully recombined echolalia (can resemble fluent speech if done skillfully enough)
  • Intermittent speech
  • Frequent speech
  • Never-speech
  • Emergency speech
  • Random speech

And that’s just a short list of the basics. And I’ve had all of these situations for years at a time, many of them combined or mixing or intermittent with each other.

Speech is not my friend.

Speech is my enemy.

Speech could actually destroy me and that’s not hyperbole. I can think of many scenarios. Many of which have almost happened.

This is why I find the encouragement of speech in people with speech impairments so frigging toxic.

What we need is communication. For some people, that’s gonna involve speech at least some of the time. For some people, it will never involve speech and should never involve speech. Some people will want to make a really good try at speech even if they know they’ll never be fluent, because it matters a lot to them, and that’s a personal choice. But it is not wrong to dislike, distrust, and disavow something that is so completely and universally destructive a force in your life as speech is in mine.

And no, I can’t snap my fingers and be able to speak fluently, it has never worked like that even at my best. The ability is either there or not and I have no choice in that. I have some choices in how it’s applied, but the basic ability comes and goes as it pleases.

And I don’t think I learned speech right to begin with, and recent experiences have convinced me that barring one of those weird moments (and I thought I’d had one here — but I didn’t, I really, really didn’t, in a huge way, I didn’t) I will never learn it right. If 15 years of virtually no speech (well, basically no speech at all aside from a few emergency speech things towards the end) didn’t give my brain the chance to reset itself and learn speech the right way, I’m not sure anything will.

And I wanted to warn other people.

Other people with the same kind of speech problems.

Do what you need to do, and what you want to do, but please keep in mind.

You may not be aware how destructive it is. The speech itself can get in your way of that awareness. It might be hurting you. It might even be hurting those around you. Emergency speech is dangerous and needs to be treated, at best, as a dangerous tool, but a tool like a power tool, one that can slice your leg off if you’re not careful, one that some people would choose to use and some people should never touch because they just can’t safely.

I can’t safely touch speech.

I can’t.

It’s not a choice.

I may be able to make choices based on the fact that I can’t safely touch speech.

But there is nothing I can do to make speech safe.

Language is already enough of a compromise, enough of a hurdle, enough of a difficulty. Even, again, at my best. And the problems I have with speech still exist in typing, they’re just much less severe and much more easy to deal with. And the person you get when I’m typing is much closer to the person I am.

My speech is just recombined echo. Much of it learned in an involuntary situation where I didn’t understand language yet and I didn’t understand the point of the speech that I was learning, such that by the time I did know the point, I’d already learned a lot of things wrong. In ways that you can’t unlearn. Things that probably laid down pathways in my brain long ago to make this either impossible or so hard it’s not worth it.

Because I have priorities, too.

I have things I want to do with communication.

And if I want to communicate, I have so many better tools than speech.

Even if I want to use language. Even though I hate language. Typed language is still better than speech.

You don’t have to understand. And I refuse to argue with anyone about this. This just is how I work and you can take it or leave it but I’m not gonna justify it or argue with people about it. You don’t know what goes on inside my brain. I do. Therefore, I get to be the one who makes these decisions, and you get to butt out if you don’t like it.

Hate to put it that way but seriously, if you knew the sheer level of havoc that speech has wreaked in its attempt at a comeback, you’d know how out of control and toxic things got before my friends intervened.

I am so happy I have friends who both care about me and understand this situation. The best friend who helped me to type again has the same sort of speech issues I do, so she knows intimately how bad it is. She said she sometimes yells nonsensical random shit at people she cares about because speech just does that to her. I’d just been doing that to someone I had no reason to do that for at all, other than, well, the presence of speech.

I understand what speech can mean to people. But to me it’s like swallowing poison. And I’m not gonna swallow anymore.

Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

One thought on “Emergency speech is dangerous.

  1. Hi – I hope you’re also getting to have good ways of documenting and sharing your non-language / non-“thinky” ways of living with people. I know there are a lot of crappy nonsense ways that people can call disabled knowledge/creativity “inspiring,” so can I just say I feel profound relief that you’re documenting things here the way you are, and that it helps me to understand my own process better? xo

    Liked by 1 person

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