Posted in Developmental disability, disability rights, Epilepsy, PSA, quotes, Self-advocacy, Temporal Lobe Epilepsy, Weave of Traditions

I don’t just have one developmental disability.

I hate labels but this post is all about labels. Deal with it.

I do not just have one developmental disability. This is one reason that I identify more with the self-advocacy movement than any diagnosis-specific movement.

So the developmental disabilities that are official in California, where I come from, are: Cerebral palsy, autism, intelleectual disability, childhood-onset epilepsy, and fifth category (anyone who needs the same kind of care and does not mostly have a specific learning disability like dyslexia, or a purely physical disability (except CP).

I have childhood-onset temporal lobe complex-partial seizures. I also have had, less freqently, absence or petit-mal seizures (where you stare and then totally forget everything that happened), atonic seizures (where you drop to the floor very rapidly and usually injure yourself, it is a sudden loss of muscle tone, not a grand mal/tonic-clonic), and myoclonic seizures (where your arms fling out while conscious for no apparent reason). I may have had other types but that is what I can think of.

Childhood epilepsy has affected me more than any other DD I have, I think. It sounds weird unless you have grown up with it largely untreated or mistreated. It hits you with out of place emotions that you start off thinking are real. It makes everything weird and repeaty. It gives me deja vu and jamais vu. Randomly, but usually in clumps. And I have developed the so-called TLE (temporal lobe epilepsy) personality. The following is from Wikipedia:

Focal aware means that the level of consciousness is not altered during the seizure.[2]In temporal lobe epilepsy, a focal seizure usually causes abnormal sensations only.

These may be:

  • Sensations such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity)
  • Amnesia; or a single memory or set of memories
  • A sudden sense of unprovoked fear and anxiety
  • Nausea
  • Auditory, visual, olfactory, gustatory, or tactile hallucinations.
  • Visual distortions such as macropsia and micropsia
  • Dissociation or derealisation
  • Synesthesia (stimulation of one sense experienced in a second sense) may transpire.[8]
  • Dysphoric or euphoric feelings, fear, anger, and other emotions may also occur. Often, the patient cannot describe the sensations.[9]

Olfactory hallucinations often seem indescribable to patients beyond “pleasant” or “unpleasant”.[10]

Focal aware seizures are often called “auras” when they serve as a warning sign of a subsequent seizure. Regardless, an aura is actually a seizure itself, and such a focal seizure may or may not progress to a focal impaired awareness seizure.[11]People who experience only focal aware seizures may not recognize what they are, nor seek medical care

Focal impaired awareness seizures

Focal impaired awareness seizures are seizures which impair consciousness to some extent:[2]they alter the person’s ability to interact normally with their environment. They usually begin with a focal aware seizure, then spread to a larger portion of the temporal lobe, resulting in impaired consciousness. They may include autonomic and psychic features present in focal aware seizures.

Signs may include:[12]

  • Motionless staring
  • Automatic movements of the hands or mouth
  • Confusion and disorientation
  • Altered ability to respond to others, unusual speech
  • Transient aphasia (losing ability to speak, read, or comprehend spoken word)

These seizures tend to have a warning or aura before they occur, and when they occur they generally tend to last only 1–2 minutes. It is not uncommon for an individual to be tired or confused for up to 15 minutes after a seizure has occurred, although postictal confusion can last for hours or even days. Though they may not seem harmful, due to the fact that the individual does not normally seize, they can be extremely harmful if the individual is left alone around dangerous objects. For example, if a person with complex partial seizures is driving alone, this can cause them to run into the ditch, or worse, cause an accident involving multiple people. With this type, some people do not even realize they are having a seizure and most of the time their memory from right before or after the seizure is wiped. First-aid is only required if there has been an injury or if this is the first time a person has had a seizure.

This is Mel again, just to note that focal impaired awareness seizures must be the new term for complex-partial seizures, which is what I grew up being told I had. Back to Wikipedia:

Postictal period

There is some period of recovery in which neurological function is altered after each of these seizure types. This is the postictal state. The degree and length of postictal impairment directly correlates with the severity of the seizure type. Focal aware seizures often last less than sixty seconds; focal with impaired awareness seizures may last up to two minutes; and generalized tonic clonic seizures may last up to three minutes.[citation needed] The postictal state in seizures other than focal aware may last much longer than the seizure itself.

Because a major function of the temporal lobe is short-term memory, a focal with impaired awareness seizure, and a focal to bilateral seizure can cause amnesia for the period of the seizure, meaning that the seizure may not be remembered.[c

Hippocampus

The temporal lobe and particularly the hippocampus play an important role in memory processing. Declarative memory (memories which can be consciously recalled) is formed in the area of the hippocampus called the dentate gyrus.[citation needed]

Temporal lobe epilepsy is associated with memory disorders and loss of memory. Animal models and clinical studies show that memory loss correlates with temporal lobe neuronal loss in temporal lobe epilepsy. Verbal memory deficit correlates with pyramidal cell loss in TLE. This is more so on the left in verbal memory loss. Neuronal loss on the right is more prominent in non-verbal (visuospatial memory loss).[14][15][16][17][18]

Personality

The effect of temporal lobe epilepsy on personality is a historical observation dating to the 1800s. Personality and behavioural change in temporal lobe epilepsy is seen as a chronic condition when it persists for more than three months.[20]

Geschwind syndrome is a set of behavioural phenomena seen in some people with TLE. Documented by Norman Geschwind, signs include: hypergraphia (compulsion to write (or draw) excessively), hyperreligiosity (intense religious or philosophical experiences or interests), hyposexuality (reduced sexual interest or drive), circumstantiality (result of a non-linear thought pattern, talks at length about irrelevant and trivial details).[21] The personality changes generally vary by hemisphere.[21]

The existence of a “temporal lobe epileptic personality” and Geschwind syndrome has been disputed and research is inconclusive.[21]

Okay it is Mel again. Most of the things listed apply to me in one way or another. In fact, the more you do your research, the more you would think (if you know me well) that they had me followed. It is far more a part of me than anything else.

One thing Wikipedia left out, is the development of an intellectual disability later in life, caused by the temporal lobe epilepsy. From the signs, I seem to have done that. I have been told by doctors I have the cognitive status of an infant. And I have been told similar things, including that I will never grow up, by a neuropsychologist who seemed to want to get my parents to put me under adult guardianship. And I know I fit the official criteria.

Hypergraphia is more than compulsive writing. It is compulsive creativity of any kind. I definitely have that.

I’m definitely autistic. But like these other labels, I don’t like being confined to it.

Also, I grew up hearing the words “underlying developmental disability” a lot. I didn’t understand them and they scared me. I wanted to know what it meant but at the time had very little means to ask. They also said that it was severe, complex, unsalvageable, and many other things to that effect.

So basically, CP is the only one I definitely don’t have. But there are other less-known ones like childhood-onset brain injury and fetal alcohol syndrome. Also given that CP is involved, there are people with physical and learning disabilities that would have qualified back in the day. I still feel like my agrin mutation leading to congenital myasthenic syndrome is a developmental disability in and of itself.

But I am part of the DD self-advocacy movement. One of the most important parts of that movement, for me, is the rejection of specific labels. This does not mean we don’t understand we are different from each other. It is just a core part of the values of the movement to put the person first and our disability second. That doesn’t mean disregarding disabilities or important individual differences. It just means we go about it in a different way.

My favorite part of the self-advocacy movement is we seem to have gotten cooperation among very different kinds of people with disabilities. For instance, I went to a live-in rec program. It was hell on earth, but the saving grace was the cooperation. I was being pushed in a wheelchair. People who could walk but unsteadily were allowed to grab my chair. Meanwhile, people who could talk would get the attention of staff. If someone fell, which happened often, people who could walk would go for help.

I have never seen that kind of cooperation among any other group of people with disabilities. Or, as a multiply-disabled (including several DDs) friend said, the DD world was doing cross-disability great, long before cross-disability was a term. We are an accident of history. There is no particular reason for us all being lumped together, other than that historically we were put in institutions for the “feebleminded”. Sometimes also the “insane and feebleminded” or just the “insane”, but mostly they focused on feebleminded.

This post is a lead-in to several other posts. I had to do it this way. Just like I need the words “genderless lesbian” without being a TERF, I need the words to explain my relationship to the different kinds of developmental disabilities.

So this is my attempt to say: I seem to have temporal lobe epilepsy (with other kinds of seizures), an intellectual disability, autism, and some kind of unnamed DD. I also have been called low-functioning. But I don’t live my life as if labels matter. I just need these words, right here and right now, to explain things. At least one further post is planned. I don’t know when.

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Posted in Being human

Maple Syrple

Roses are red, violets are purple
Sugar is sweet and so’s maple syrple

Roger Miller

That quote will never not be hilarious to me.

THIS MATTERS.

A pot of violets an da bottle of maple syrple.

Little things matter.

Little things people consider frivolous matter.

Sometimes they matter more than most things.

They’re part of the humanity that I get denied every day.

Just being allowed to care about shit like this.

Being allowed to have little things like this.

You only notice when people start trying to take it away.

Trying to make it sound like it’s not important to have things like this in your life.

Sometimes they do crap like decide this is all your life can be, and that’s all kinds of fucked up.

But other times they act like you can’t have this.

Like you can’t or shouldn’t care about things like this.

Especially when you’ve got lots of serious shit going on.

People act like you should be super-serious all the time.

And only care about certain things.

And care about whatever the hell they think you should care about.

And so you hold onto shit like this.

Which is why it pisses me off even when people say that people shouldn’t post their dinner on social media.

Maybe their dinner matters.

It’s actually little things ike this that make up everyone’s life.

Little bits of the world.

They matter.

Noticing them matters.

Living them matters.

Life without them, especially forced life without them, doesn’t work well.

People need things like this. Different people need different things. But everyone’s got things.

I’ve loved the maple syrple line my whole life. Not stopping now.

When people share things like this with each other it’s being social about little things we care about.

And people who like to do that like to do that, and that’s fine.

And people who like to keep it private, that’s also fine.

It’s just, there’s all kinds of ways to deny someone’s humanity.

And denying people these little weird bits of life, it doesn’t sound like much, but it does deny part of your humanity.

And it has a bigger impact than you’d think.

So think twice before you make fun of people for posting things like this, or pooh-pooh it to people, or say that people who like things like this are stupid or something. You don’t know who you might be hurting, or how deeply.

People don’t understand what gets taken away from you.

And I don’t know how to explain.

All I can say is:

MAPLE SYRPLE MATTERS. PERIOD.

Posted in Values & Ethics

Valour without renown.

Painting of Éowyn and Aragorn from Lord of the Rings.

“A time may come soon,” said he, “when none may return.  Then there will be need of valour without renown, for none shall remember the deeds that are done in the last defence of your homes.  Yet the deeds will not be less valiant because they are unpraised.”

J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.

I am taking this quote entirely out of context, because the words valour without renown have been floating around my head a lot in recent years without context, and finding their own context within the world I find myself living in.  So don’t expect literary analysis here, nor any take on these words other than my own.  Which is both larger and smaller in scope than the original context.

Valour without renown seems on the face of it to be talking about courage — possibly especially battle-courage — without outward recognition, without going down in history, possibly even without a history existing to go down in.  And that is one piece of it, one way it can happen.  In a broader sense you could talk about courage in general, without praise in general.

But there’s one thing that this keeps distilling itself down to for me, with diamond-like precision and clarity.

It’s doing what is the right thing to do without any reason or incentive other than it being the right thing to do. Not just courage, but any right thing.  Not just recognition, but any sort of outward motivation, or any expectation of reward of any kind.

This is both simpler and more complicated than it sounds.  The hardest thing you can do but from some perspectives, easier than many of the alternatives.  Easy to describe in three words, and impossible to describe even if you had infinite words.  Not contradictory at all, yet good at producing sentences like these ones when you try to approach it wielding language.1

It’s also one of the most important things any of us can learn right now.

Then there will be need of valour without renown… Yet the deeds will not be less valiant because they are unpraised.

J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.

It’s no secret that the world is extremely messed up at the moment.

And my friends and I, we’ve all been noticing patterns in how it is messed up.  Patterns that we have trouble putting into words.  My friend’s cat has cancer right now, so maybe it’s for that reason that the word malignant comes to mind so strongly.  Or malevolent, or just plain evil.  As in, things that feel more like there’s a whole pattern of nasty forms of intent behind them than, say, random forces of nature seem to have, no matter how brutal.

And most of us are at a loss as to not only how to describe such a thing, but what to do about it.

One fortunate thing about the world is how many and varied the things within it are.  People alone make up billions of variations on those things, and there’s lots of things in the world besides people.  For each one of us, at any given time, there are many good things we can do for the world, and many possible ways to go about doing those things.  Some may be better things, and better ways, than others.  But which one is the best choice varies based on timing, context, person, and every possible way the situation can vary.  Sometimes there are more choices than others, sometimes there seem to be few or no choices, sometimes all the choices have terrible consequences.

But there are always many ways to do the right thing.  And each one of us can be a part of doing that.  Sometimes it’s something seemingly tiny and insignificant.  Sometimes it’s something seemingly huge and obvious.  Sometimes it’s both, sometimes neither.  And almost always, in any situation, there are many choices.

And telling right from wrong is rarely as easy as stories make it out to be.  And very few things are all right or all wrong.  And in very few cases do we learn the full consequences of our actions, either at the time or even in hindsight.

But we still should be making the effort.  In times like these more than any.

I’ve talked about this before from time to time.  Mostly in the context of death.  Personal death, death of a culture, death of a species.  But death.  Destruction.  Even the “end of the world,” as most people see it.  Situations that seem hopeless.  Where it’s tempting to say that trying to do the right thing is pointless.

It’s at those times that doing the right thing may matter more than any other time.

If the way you treat someone right now matters, it matters just as much when you are thinking about the fact that one day both you and the other person will be long dead and nobody living remembers either of you.  It may matter even more knowing that.  So why is it that when people think of ‘hopeless’ scenarios, they think that what they do doesn’t matter in light of their own death or the extinction of their species or some other large or small catastrophe? 

To me, it matters more, it always matters more, knowing we won’t always be around.  There’s always a responsibility to other people in the now, even if history as we know it ends tomorrow.  There’s always a responsibility to the people and things that come after history as we know it ends. 

Because the world is made up of so much more than ourselves alone.  And the world functions as all of us acting on each other.  Not isolated people or cultures or species floating around as individuals with no effect on the world around us.  What we do always matters whether other human beings ever seem to notice or care.

And that’s just one tiny piece of why this ‘valour without renown’ thing matters so much.  It’s the part I’ve described the most before, the part I have the easiest time putting into words.  And that part isn’t easy to put into words.

One of the most important things we can learn is to be motivated enough that if it ever comes down to it, we can choose to do a very difficult right thing to do, utterly regardless of what reaction the world around us appears to have to it. 

Sometimes it’s difficult because it’s something huge and scary.  But sometimes it’s difficult because it’s something seemingly small and insignificant when we’d rather make a grand gesture of some kind.  Sometimes it’s difficult because there are so many right things to do it’s hard to know which one to choose.  Sometimes it’s difficult because it’s hard to tell what the right thing is, or even if there’s anything you can do that’s right enough to do it.  Sometimes it’s difficult because it feels like doing nothing, even though refraining from action can be just as significant and important as acting, sometimes.  Many things can make it difficult.  But everything makes it worthwhile to try.

And trying is the most any of us can promise, I think.  We can say we’d do the right thing, but until we’re in the situation, we don’t know what obstacles we’ll be up against, from within and without.  We don’t even know if we’ll be aware we’re in that kind of situation at the time.

But we can try.

We can make the effort.

That’s all we can do.

And that’s doing a lot.

But hard times, times that people think of as hopeless, those are the times when we all need to be thinking about how to figure out a right thing we can do, and do it to the best of our ability.  Regardless of outward consequences.  A lot more depends on that than people sometimes realize.

And that’s actually a good thing.

Believe it or not.


1The Tao Te Ching sums this kind of thing up pretty well:

The bright path seems dim;
Going forward seems like retreat;
The easy way seems hard;
The highest Virtue seems empty;
Great purity seems sullied;
A wealth of Virtue seems inadequate;
The strength of Virtue seems frail,
Real Virtue seems unreal;
The perfect square has no corners;
Great talents ripen late;
The highest notes are hard to hear;
The greatest form has no shape.

Lao Tzu, Tao Te Ching, translated by Gia-Fu Feng & Jane English
Posted in Developmental disability service system

Snake Words: Hiding the Dystopia

Lords and Ladies by Terry Pratchett

“Elves are wonderful. They provoke wonder.
Elves are marvellous. They cause marvels.
Elves are fant

astic. They create fantasies.Elves are glamorous. They project glamour.
Elves are enchanting. They weave enchantment.
Elves are terrific. They beget terror.
The thing about words is that meanings can twist just like a snake, and if you want to find snakes look for them behind words that have changed their meaning.
No one ever said elves are nice.
Elves are bad.”
― Terry PratchettLords and Ladies

(Apologies to actual snakes.  Snakes are cool.)

The DD service system loves to pretend that it is a utopia ushering us all into an age of inclusion and empowerment and lots of other nice words.  The problem is that for a lot of us, far from a utopia, it is a dystopian nightmare.

One way they protect the illusion that it’s all wonderful is by changing the meanings of words.  They have a talent for taking a word and turning it into its opposite.

They have a term, for example, dignity of risk.  What that term is supposed to mean, is that too often people with developmental disabilities are ‘protected’ from taking risks that other people are allowed to take.  We may be forcibly prevented from drinking alcohol, or having sex, in ways that other adults are not.  Dignity of risk is supposed to mean that we have the right to do things that agencies might consider risky or dangerous.

Here is an entire Wikipedia page on dignity of risk. 

But here’s how the system actually can use it:

Let’s say there’s something that you really need them to do.  The agency failing to do that thing will result in you being in danger.  You know this.  The agency has a duty to do this thing.  You want the agency to do this thing.

The agency does not want to do the thing.

So they set up an impossible set of hoops you have to jump through in order to do the thing.  When you can’t jump through the hoops, they tell you it is your own choice that the thing is not getting done.  If you really wanted it to get done, you would jump through the hoops.  The danger you now face as a result of their neglect will now be referred to as your choice and defended with the idea of dignity of risk.

So like the fact that until recently I hadn’t been bathed in a year or two?  Dignity of risk.  Except this is not a risk I chose.  It is a risk they chose for me.

See what I mean?  They can take a word, twist it inside-out, and turn it on its head.  Until they can justify taking away all your freedoms with language designed to protect your freedoms.

The DD service system is excellent at playing this particular word game.  It can be especially confusing if they use the right meaning of the word sometimes, but the wrong one most of the time.

Always, always look for the snakes behind the words.  Because they’re there. And in the DD system, they’re everywhere.  Every word or term that has an actual meaning that is supposed to protect our freedoms and rights as people with developmental disabilities, has an evil twin that looks exactly the same but exists to take away our freedoms and rights.

Look for the snake words.  Just look for the snake words.  If you understand how they work, they will give you a window into the dystopia a lot of us are living in.