Posted in Speech

New blog topic: Speech

I am going to be starting another blog topic series of posts, probably. This one is about speech. I haven’t really written a lot about my experiences of speech in recent years, but things have changed in two major ways.

One is that I’ve unintentionally developed a small amount of speech that actually works.

This is not enough for me to consider myself a speaking person. But it’s more than I’ve ever had in my life. By which I mean, even when I sounded much more fluent than I do now, I never had a consistent set of words that would communicate my thoughts. I didn’t have consistent anything. I now have kind of a consistent baseline that’s communicative. As usual with these things, I’m discussing what’s really happening for me, not what appears on the surface.

The range is very limited though. I’ll get into what it is later because I think that’s important information for other people with speech problems. But for instance, it started out with just cuss words and words that were highly emotive. That’s still my strongest set of speech. Also things you would say to a cat. And what I call ‘corner words’, which will probably require a lot of explanation. But this is all highly limited and narrow areas with high walls around them. This is not something where I can substitute it for typing and have it work. Instead it sort of enhances the typing.

Most people I know who type to communicate and are considered non-speaking actually have some amount of this kind of speech, by the way. It’s just not enough to use as your main way of communicating. Very few people are 100% speaking or 100% nonspeaking, and which one you’re considered seems to vary a lot. And depend on far more than what speech you have.

So… the other thing that’s happened, and that I’m more interested in discussing in some ways, is what I call emergency speech.

It is not voluntary. I can’t turn it on and off at will. It is not frequent. It has happened a handful of times in the huge amount of years I’ve spent not speaking. It does not always happen even when it could be very useful or even life-saving. But it does happen sometimes.

And that is where i gain fluent speech for anything from seconds to weeks, always in the context of a medical emergency of some kind.

Again I can’t emphasize enough, this has happened a handful of times. This is not something I can turn on and off at will. And it doesn’t even happen every time it’d be useful.

And it does something horrible to my brain — well lots of horrible things — that I really want to discuss, because it’s clear that fluency of that level only happens by cannibalizing large parts of my brain functioning. In ways that are spectacular and potentially dangerous.

And I think that’s important to document.

I think it’s important to show what happens when someone’s brain forces the issue of doing something that it really has no business doing.

Because it’s ugly as fuck.

I used to just go with it and figure my instincts knew best, but at this point I am doing my best to shut it down whenever it happens, because the results are pretty terrifying.

And I think that’s important for people to know.

Also, this is not an unheard-of phenomenon. I have spoken to researchers about it. And I’ve noticed it in both official literature, and in accounts by parents.

One of the most terrifying — especially now that I know the consequences of emergency speech long-term, but even before that its as terrifying — is these parents who’ve discovered that their children who can’t normally speak, speak more fluently and are more social when they have high fevers.

What’s terrifying is that given the world of disability parenting and autism parenting in particular, instead of seeing this for what it is, there’s a group of parents who see this emergency functioning mode as a good thing. And therefore attempt to do things to give their children high fevers.

Like. Not only is that abusive and unethical and medically dangerous. But also forcing a child to function in emergency mode — especially while sick — will do terrible things to them, especially over the long term. And nobody will connect the dots because nobody really gives a shit about the effects of overtaxing people’s limits. And emergency mode is all about going beyond your limits for a short time — like a mother lifting a car off a child despite not normally having the strength. You couldn’t and shouldn’t do things like that every day, they happen only in emergencies for a reason.

Anyway I have a lot to say about speech. And I haven’t really written a lot on the topic and on the changes I’ve been through in recent years with baseline speech. And I haven’t written about emergency speech either. So these are both broad topics that I want out there mostly for the benefit of other people experiencing them. I’ve always benefited from other people describing their experiences of things, so my intent in writing about this is to possibly benefit other people in this same way. And also to warn people of the dangers, because there are actual dangers here. I didn’t realize how dangerous emergency speech is until I got stuck in a cycle where it kept popping up long after it was sustainable to continue.

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Posted in Death & Mortality Series

Death & Mortality Series.

Hello, and welcome to the first post in my Death & Mortality series.  You can read my Death and Mortality posts any time with the Death & Mortality Series category on this blog.  This post is essential to understanding the context of any post I make about my experiences and viewpoints around death and mortality, so if you’re able to read it please do.  It will explain what I do mean, what I don’t mean, and why I am planning to write so much about death at all.  And especially this post explains a particular way I do not ever want my posts about death taken or used.  So moving on…

Light shining through the canopy of a redwood forest in San Mateo County.
Canopy of Redwood Terrace with sun shining through.

I have meant for a long time to write a long series of posts about my relationship with death and my own mortality.  But the sensitive and complex nature of the topic has always stopped me.  It’s not the kind of topic where my views can be summed up in a single post.  At the same time, if I posted some of the things I believe and experience, I worry they could be used out of contexts to support viewpoints that have real-world deadly consequences for disabled people.  So I have hesitated to post about it except in certain selective contexts.  And I have let many important things go unsaid.

Because death is an important topic for everyone.  It’s the one thing that all people are guaranteed to experience.  And there are a lot of taboos about even discussing death.  So I want to discuss my relationship with death in detail.

But I also want to say up-front that I speak for nobody but myself and maybe any others who may feel the same as I do.  (It’s not uncommon, but goes largely unspoken.)  And that I never mean to imply that my experiences ought to be the same as another person’s experiences.  Your relationship with death is deeply personal.  Everyone has a different one.  That is not a bad thing.  Lots of people see death very differently than I do.  Lots of people experience their own mortality and that of others in a very different way than I do.  That diversity of experience is probably a good thing.  I in no way intend to say that everyone can or should view their own death or that of of others in the same way I do.

That said, I do have certain views about death that go beyond the personal.  For instance, my views on the way disabled people face ableist assumptions that kill us on a regular basis.  Those are not just my personal views about facing my own mortality.  Those are views that I do think are important on a wider scale than me and people like me, because those ableist ideas are out there killing people every single day.  They have almost killed me more than once.  And I draw a distinction between what’s essentially a political standpoint (my views on death and disability), which is intended to be taken broadly, and things that deal with my very personal, very subjective relationship to death and my own mortality.  Hopefully you can understand there’s a distinction here, even if the two have some overlap.

And it’s that tension between a very private and subjective personal experience, and a political view about ableism that is already killing people, that makes this such a difficult topic for me to discuss.  Because my relationship with death is extremely friendly in nature, my views of death are very positive.  But part of that deadly ableism out there is the idea that disabled people are better off “accepting” death, or just plain better off dead.  And I don’t want my personal acceptance of death to ever in a million years be used to justify the idea that disabled people should just accept our fates to die and not fight for our lives like anyone else would.  That’s not the kind of acceptance I talk about when I talk about my personal acceptance of death, and anyone using my personal acceptance of death to justify DNRs for all disabled or potentially disabled people or something is flagrantly misusing my words out of context to support things I would never support, and will be treated as such.  (And no, I will never have a DNR, that’s not what I mean when I say I accept death.)

But the real reasons I want to talk about death are more related to the unexpected personal experiences I have had along the way.  Far from feeling morbid, my relationship with death has long been extremely life-affirming.  And while it may sound like and dovetail well fo the most part with certain viewpoints out there that are becoming more popular or at least more openly spoken of, there are sometimes differences that are important.  And everyone’s various experiences of these things are important, and not things that should have to be hidden in the shadows to make a death-terrified society comfortable.  Nobody should have to talk about these things in public, but it should be something people can have a public discussion about.

Obviously the topic is also highly emotionally charged for just about everyone.  Most people have strong feelings about death whether they think about it regularly or not.  It’s something everyone encounters and has to grapple with, and everyone responds to in different ways based on everything from personality to culture to personal experiences in life.  Our own mortality shapes us, the loss of loved ones shapes us, and these things can make death an extremely difficult topic.  So does the fact that it’s in many cultures something you’re just not supposed to talk about.  And where there are often rigid views that people are expected to hold.  So I totally understand how emotional and difficult discussions of death can be for people in a huge variety of ways.

Also, my posts may get into specific religious and spiritual views, or things that sound like religious and spiritual views, that are personal to me.   All cultures and religions have extremely varied views on death, and many people are atheist, not religious, or have very specific personal views that don’t follow any particular religious view.  I respect all of those viewpoints and how they can differ both between and among themselves.  Please respect my own views, and that my holding and discussing those views does not mean I am trying to force anyone else to believe the same things I do.  These things are, again, very personal.

All of these things have made making even one of the posts I want to make, very difficult.  But I do want to make a series of posts dealing with death specifically.  And writing this, so you understand the context I’m doing it in, is the first step.  And the step that has kept me from writing any of the others.

I don’t know how fast I will write more posts, or how many I will write.  Whether I write one or dozens, be aware that each is only a small piece of a larger whole.  Some posts may even seem to contradict each other at first glance, especially if you’re unfamiliar with views similar to my own.  (People often expect one view to be clustered with a bunch of other views in a certain way, and my views on just about anything do not tend to follow those expectations very well.  It makes it hard to communicate sometimes.)  Like many people would be a little confused by I completely accept death and even welcome it as an important and beautiful part of life and I want to live as long as I possibly can even at costs other people would find unacceptable coming from the same person.  But those are viewpoints I hold and they don’t actually contradict each other.  And many people assume the only reason someone could possibly want “extraordinary measures” medically is an extreme fear of death — not true either.  So just… please try not to assume too much from a single post, or you’ll get confused.  If I could make one post that summed up everything, it would’ve happened already.

TL;DR:

  • I’m making a series of posts about death and mortality.  I don’t know how long it’s gonna be.  You can find it in my Death & Mortality Series category.
  • Some posts will deal with highly personal views.
  • Some posts will deal with more broad political and ethical views, especially around disability rights and deadly forms of ableism.  When it comes to these broader topics I am going to sometimes say when I think certain views and policies and systems actually harm and kill people.
  • Each of us deals with our own death and mortality differently for a huge number of reasons, and just because I deal with mine a certain way doesn’t mean I’m telling you that you have to deal with yours the same way.
  • I respect the many different cultural, religious, and spiritual perspectives that exist out there regarding death, please respect mine.  In stating mine I’m not trying to say yours are bad or that everyone should share mine.
  • Please understand each post is once piece of a complicated issue.
  • If this is too intense for you, feel free to skip it.
  • This is all extremely important to me.

 

Posted in Blogging about blogging

Welcome to my blog.

Sometimes it’s just easier to start over.  My other blog always feels like it’s got so much of the weight of my previous writing on it, it’s hard to add to it without getting overwhelmed. Plus I started it and carried out most of my blogging at a time when my focus and personality were both very different from today. People come to expect a certain type of posts, or a certain range of topics, and you start to feel hemmed in.  Even when you want to say “To hell with it, I’ll write what I want,” you still get stuck in a rut. This blog is my experiment in breaking out of that rut.

Seeing as it’s an experiment, I don’t know where it’ll go. I don’t know if this will be the last post. I get some serious posting inertia when it comes to blogging, but you never know. I don’t even know who’s going to be interested in reading this, other than people who know me already. I may even forget the blog exists. Stranger things have happened to me online.

So let’s see where this goes, if anywhere at all. Either way it’ll be interesting.

Oh yeah, and “cussin’ and discussin'” was one of my dad’s pet expressions. And it’s not a bad description of what goes on, on the average blog. 🙂