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 Developmental disability, disability rights, Self-advocacy

I’ll take the ‘dirty’ dick jokes rather than the ‘clean’ r-word jokes, thanks.

I watch a lot of standup.  I watch good standup, bad standup, everything in between.  I just watch standup whether I like it or not.

And I vastly, vastly prefer the comedy that allows for dick jokes and other things that aren’t considered ‘clean’.

Obligatory hot dogs…

Because it’s less likely to seriously offend me.

Because people with intellectual and developmental disabilities are acceptable targets of ‘clean’ comedy.  So when they get rid of all the dick jokes and all the stuff that’s socially unacceptable and ‘dirty’, they’re left with acceptable targets.

Which includes me.

And no, hating r-word jokes is not the same as censorship or not being able to laugh at myself.  I laugh at myself, and at disability, all the time, to the point it makes a lot of nondisabled people really uncomfortable.

The issue is that most r-word jokes are hate.

They’re not meant in good fun.

They say “You’re not a human being.”

It doesn’t matter if you cloak that message in humor, it’s never okay.

The primary targets of the r-word are people with intellectual disabilities.  But it has a broader range than that — it’s aimed in general at a group of people who are harder to define.  Anyone who can be easily mistaken for someone with an intellectual disability, certainly.  And anyone who’s been, in the imaginations of most people, sort of lumped together as this blob of people who aren’t really human beings.  That includes most people with developmental disabilities, some people with cognitive disabilities, and, as I said, it’s a group whose borders are fuzzy and indistinct.  But we’re all lumped together under the r-word in the imaginations of the people who use it.  It’s not a diagnosis, it’s a slur.

And I don’t use the word slur lightly.

To me, for a word to be a slur, it has to be a word that contains within it the notion that the people targeted by it are not really people or human at all.

It can’t just be an insult that’s often thrown at a particular group of people.  It has to be more than that.

The r-word is probably the slur I have absolutely the least tolerance for.

People have been calling me the r-word since I was a child.

My voice sometimes has ‘that tone’ in it that people associate with the r-word.  A sort of ‘dullness’.  People imitating my voice have always taken advantage of that.  And they imitate my posture and mannerisms as well.

By the way it’s very fucked up to have a common mannerism associated with people like you, be the actual American Sign Language word for the r-word.

But you don’t need to speak ASL to use our mannerisms and tone of voice against us.

And yes — people used the r-word on me even when I was technically classified as gifted.  In fact, they told me “Gifted is just what they call [r-words] to convince them they’re doing well in school when they’re really going to special classes.”  I’m not the only person I know with developmental disabilities who was told this growing up.

I was also told I looked like a [r-word] as a way to get me to behave more normally.  It didn’t work.  I never had any idea what they were talking about.  (I also got called “blind” and “psychotic” in similar circumstances.  There was always a tone of complete disgust, like I was a dog who’d just shat on the table at a fancy dinner party or something.)

At any rate, r-word jokes aren’t funny.  At least, not the ones I’m talking about.

And the fact that they’re considered perfectly acceptable for ‘clean’ comedy to the point they seem more common there than in the ‘dirty jokes’ kind, says a lot too much about the society we live in.

R-word jokes are an expression of hate, not an expression of humor.  It’s not just the word, it’s the way it’s used.  It’s the acceptance that those of us targeted are not human beings.  It’s the knowledge that every time someone accepts this kind of hate into their mind, people like me are at more risk of bullying, abuse, hate crimes.  And that most people don’t even register it as hate.  Even though it’s some of the most horrible and dangerous hate I’ve ever seen.

Sacha Baron-Cohen says, “I am exposing.  I am airing prejudice.”  The only problem is that the people [who] are laughing, are not laughing at the prejudice.  They’re applauding the prejudice!  When the joke is “Throw the Jews down the well, kill the Jews” it’s not funny.  But even if it was funny, they’re applauding it.  

Abraham Foxman, “The Last Laugh”

I agree with a lot of the people on “The Last Laugh”.  It’s a documentary about where the line is between acceptable and unacceptable topics for humor.  I don’t think there’s unacceptable topics for humor, but I do think there’s more and less acceptable ways to handle them.  And a lot of it depends on who is saying the joke, how they are saying it, and what they are saying. 

And when I talk about r-word jokes, I’m talking about people without any of the disabilities covered by the r-word making jokes at our expense.  Telling a joke that has real-world consequences and hiding behind “It’s just a joke” is both cowardly and dishonest.  And I feel like there’s a tradition among comedians to hide an immature impulse to do whatever you’re told not to do, behind some kind of pretense of moral nobility.

Give me a good dick joke any day.  Seriously.  Sex can be funny.  Hate isn’t.  At least, expressing hate is not funny.  Tell some good jokes about asshole comedians who think hating people with I/DD is ‘clean’, though, and I might laugh.

Posted in Developmental disability service system

Big Words

An old-fashioned girl and boy, she is older, and she is pointing in his face as though lecturing to him. A caption says, "People think I'm too patronizing. (That means I talk down to people.)"
“People think I’m too patronizing. (That means I talk down to people.)”

So years ago I took a sexuality and relationships class from my developmental disability agency.  The class wasn’t actually half bad and I learned a lot. One of the two instructors, though…

So there’s a bunch of us in the lobby of the building waiting around for class to start.

And they decide to do some kind of introduction to the class down there in the lobby before we go up to the room the class is in.

And there’s two instructors, a woman and a man.  I know the man, he’s okay.  But the lady is one of those people who’s secretly terrified of people with developmental disabilities and masks it with twenty layers of condescension.  And they always think we don’t notice. We always notice.

So she’s talking down to us, and asking us what we expect to learn in the class, and so forth.

And a guy with an intellectual disability very deliberately asks, “Are we gonna learn about cunnilingus?”

She flinches, tries to recover, goes five times as sing-song, and says, “Woowwwwwww, that’s a biiiiiiiiig woorrrrrrrrrrrrrd.”

We were… unimpressed with her, to put it mildly.  And she had no idea what an ass she was making of herself.

Anyway, I wish I could think quicker on my feet, or I’d have quoted Terry Pratchett:

“Hello, little girl,” he said, which was only his first big mistake. “I’m sure you want to know all about hedgehogs, eh?”

“I did this one last year,” said Tiffany.

The man looked closer, and his grin faded. “Oh, yes,” he said. “I remember. You asked all those… little questions.”

“I would like a question answered today,” said Tiffany.

“Provided it’s not one about how you get baby hedgehogs,” said the man.

“No,” said Tiffany patiently. “It’s about zoology.”

“Zoology, eh? That’s a big word, isn’t it.”

“No, actually it isn’t,” said Tiffany. “Patronizing is a big word. Zoology is really quite small.”

-Terry Pratchett, The Wee Free Men (exchange between a girl named Tiffany and a wandering teacher trading knowledge for food)

As it is, I think we all settled for rolling our eyes and the like, which our instructor of course missed entirely.   Just like she missed the point of the guy choosing a word like cunnilingus when being talked down to…