throwback Thursday: hospital treatment and the cultural wall

I know, it’s already Friday some places.  Still, here is a tbt post re:  emergency room visit a few years ago.

Another reminder today that all the help (for me but also for mine) I supposedly just need to reach out for is not help at all. People are always telling me that if I asked for help more often that I’d, you know, get help. Instead, I invest time and energy I do not have, and end up with less time and energy than before, and no more help, support, resources, or knowledge than before. Plus I am that much more jaded, which I struggle against, because I need more struggling in my life. Also I get the darling experience of being personally dismissed, invalidated, or sometimes just misunderstood by yet another authority figure or expert, because I need more of that in my life too.

To be fair, 1 in 20 times that I ask for help I get help and not a traumatic experience. And individuals are a better bet than departments or facilities every time.

The hospital/ doctor/ expert_in_general experience is really about hitting a cultural wall. Here is my attempt to explain (this particular experience involves trying to get help for my nonspeaking daughter):

Me: She’s had periodic outbursts of weeping, writhing, and crying out in pain…

Them (multiple people at multiple places by this point, but now it’s the ER dr): She looks fine to me.

Me: Wait, what?

Read: “Your reality is inconvenient, inconsequential, and/or invalid; my reality is right. Your lived experience is hereby reinterpreted to fit into my reality, or discounted altogether.”

She is not in the middle of an episode therefore she has never had an episode? Or the episodes stopped for now and therefore are over forever? Or you can’t really believe the episodes happen from my testimony? Because as a woman, I’m overemotional and hysterical, and as a mother, I am even moreso when it comes to my children?

The message conveyed was of disbelief (or complete disinterest; it’s hard to be sure which). I still get taken aback by that because it is 100% inappropriate, period. Even though I run into it over and over again.

So I reiterate: This was a thing that happened in the real world. She seemed to be in great pain, and pain is not something that should be ignored.

Them: I’m not sure what you want me to do.

Well, hey there, we’re in a medical facility with access to all kinds of diagnostic tools and tests. Let’s try to get a better idea of why she would be in pain. Why not do the tests the other dr wanted done, now, instead of in a couple of weeks?

Them: Why? I don’t think so.
Maybe it’s just “behavior”.
Maybe it’s just her hormones.

(Now you’re dismissing her for being female, teen-aged, *and* disabled. Great. Glad to hear that.)

Them: That must be really frustrating for you, not to know.

Aaaaand you do not get the irony of pretty much refusing us any help at all in finding out, or at least ruling out, what might be going on.

And we are dismissed.

Read: “I’m not sure why you came in, but if you’ll excuse me, there are patients and problems that I actually choose to acknowledge.”

Some people know what I mean by this wall; we have a shared experience but don’t usually have terms to refer to it by. Others do not have any experience with it themselves and do not know what I’m talking about. What wall?, they say. So again my lived experience is questioned and/or discarded. And I explain again.

Or try to.

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Mental Age

Sharing this article from Nos Magazine on Mental Age Theory

Several important things to note here.  (See also: functioning labels)

1. Childism

Ableism & childism are inherently connected in “mental age” theory and society’s generalized beliefs about “mental age”. To be called childish, to be compared to a child, to be reduced to a child, to be treated as a child for one’s entire life is insulting and abusive- because children are not seen as fully-functional human beings with full human rights.

Children in our society are vulnerable creatures at the wrong end of an enormous power differential. Children are not seen as having the right to make choices about what happens to their bodies or their lives, or to even argue about such things with adults, who are seen as having the right to physically and psychologically punish them.

2. Ableist slurs

Slurs like idiot, imbecile, and moron are used as insults by even the most politically correct- people who would shudder in horror and outrage at the use of r*/tard. Yet, like r*trd, these words were also once medical diagnoses used to deny a person’s humanity and consign them to a lifetime of incarcerated abuse and neglect. (This also applies to dumb, as in, unable to speak; the assumption being that you must not be able to think, either. There are more examples, see: lists on the internet.)

To use these terms flippantly not only trivializes and dismisses the great harm society does/ has done to people with developmental/ cognitive/ intellectual disabilities (and mental illness), but also perpetuates the belief that such people are subhuman and revolting.

3. Neurotypical assumptions

Some people do not respond in a neurotypical fashion or timeframe. Their atypical responses (or, for that matter, lack of response) don’t mean they aren’t taking in information, sorting it out, and applying it to their lives, in their own ways. These ways are valid and functional for them, but are often overlooked, ignored, dismissed, or pathologized instead of given due credit. This is a failing on the part of neurotypical evaluators, not the people being evaluated.

rudolph

here’s a grinchy stand-up routine I made up, because why not

Rudolph the Red-Nosed Reindeer
Had a very shiny nose
And if you ever saw it
You would even say it glows

what kind of missions is Santa sending his reindeer on, that they come back and have radioactive children?  is this fallout from the world wars?  is someone burying nuclear waste at the north pole?  even magical folk think it’s a bad sign when you start to glow

All of the other reindeer
Used to laugh and call him names
They never let poor Rudolph
Join in any reindeer games

so Santa’s reindeer, whose purpose it is to deliver joy and toys to all the children of the world on Christmas Eve, are basically just assholes the rest of the time?  is that supposed to be a satirical remark on Christianity or something?

Then one foggy Christmas Eve
Santa came to say
“Rudolph, with your nose so bright
Won’t you guide my sleigh tonight?”

Santa’s all like, I have a magical toy workshop run by magical elves, use magical reindeer to fly around the world in a magical sleigh in a single night, and use magic to fit down any chimney or through any keyhole to get where I need to go, but, fog.  I mean, whatcha gonna do?

Then how the reindeer loved him
As they shouted out with glee
“Rudolph the Red-Nosed Reindeer
You’ll go down in history”

yeah.  hey Rudolph we’ll let you do the thing you were actually literally born to do and have been fully capable of doing this entire time (ie, pull Santa’s sleigh) even though you’re different from us in a way that doesn’t affect your functioning, and that will make us feel so generous and good about ourselves because we were not assholes this one time.  yay Rudolph you’ve saved CHRISTMAS/ most condescending cheer ever.  fact check:  “you’ll go down in history” is the equivalent of “this story will go viral on the internet”.  just Google “inspiration porn”

 

Ho ho ho  X)

 

Sentencing in the death of Alex Spourdalakis

(This is a bit late as wordpress did not post it the first time around.)

I recently started reading War on Autism: On the Cultural Logic of Normative Violence by Anne McGuire.

And then I heard the sentencing in the death of Alex Spourdalakis.

Honestly, given this and the police shooting right after I started They Can’t Kill Us All, if I didn’t know how prevalent filicide and police brutality were in our society already, I’d be wary of what I read next. As it is, though, I feel I need to read faster.)

Alex was killed in 2013 by his mother and godmother. You can read the very basics here: http://disability-memorial.org/alex-spourdalakis

Emily Willingham has written a brilliant piece here: Here’s Why You Don’t Want To View Disability As An Excuse For Murder (Forbes).

And I just want to say:

people, if a week-long premeditated murder- which, in fact, did not go as planned and offered a chance for backing out of the whole thing but instead resulted in an escalated determination to kill the victim in a desperately gruesome way- a murder in which a mother kills her own child, is treated as “INVOLUNTARY MANSLAUGHTER” and the ridiculously lenient sentence essentially dismissed as TIME SERVED-

people, this is not justice.

people, when this keeps happening, and it does, it has for years and decades and is the norm actually, it is genocide.

when there is no MENTION (much less call to action) of the role that pathologizing autism, propogating hateful and harmful quackery as “cures” for autism, or pandering to and manipulating the fears of would-be caregivers plays in abuse and murder of autistic people-

nobody mentions it because nobody sees anything wrong with it.

nothing wrong with believing and being led by hate and lies and fear. nothing wrong with the genocide of autistic people.

Throwback Thursday- No sensory filter

from July 28, 2013:

Today is one of those days where I have no sensory filter. Nothing gets relegated to the background. Everything registers as a cause for concern or wonder, immediately demanding my attention, at the same time as everything else. It’s a ridiculous state; I know it’s just an ordinary day. But I have to verify every modicum of it as such.

Every smell bothers me, every sound, every visual, if only because it’s accompanied by a thousand others, clamoring for a conscious acknowledgement and some sort of verdict, as if I must personally assign or confirm its place in the universe. It is so hard to hold onto a thought, much less a train of thought; to recall a memory, much less form a memory; to focus on anything when it seems I must focus on everything instead. It’s a ridiculous state, but an overwhelming and exhausting one just the same.

It made me think about something Philip Larkin said, about death: “the bits that were you/ Start speeding away from each other for ever/ With no one to see.” How can you hold onto your self when you are flooded, when you start to break down and dissolve?

This won’t last all day- it’s already much abated- but, still, I had somewhere I was going with all this, some sort of insight wherein all was resolved and hope restored or something, but then my son interrupted me half a dozen times to tell me what happened on various episodes of Ask Charlie, the cats meowed my ears off in hopes I would feed them an hour earlier, and my daughter insisted on my making mashed potatoes, and I forgot what I was going to say.

It had something to do with cairns.

Still don’t remember.

 

jotting

Here is a note to myself to think upon and return again to one day a theme which has been important for humanity probably since the beginning (I mean, off the top of my head is the myth of  Chiron from Ancient Greece ):  the wounded healer.

Our pain is an asset (even if sometimes it is also a curse).

A list of recently-encountered examples I can add to and keep track of:

Lucy Stone’s migraines

Emma Goldman’s constant pain from a “female disorder”

Rachel Carson’s cancer

Emily Dickinson’s (apparent) tuberculosis

Better off dead

content warning:  discussion of ending other peoples’ lives

ex: this and this ad infinitum

Our society is filled with narratives about people that we couldn’t fix, who couldn’t or wouldn’t handle our expectations and fit into society already. And the narratives say that those people are better off dead, whether it’s the poor sick, broken people or the deviant, different, dangerous people. Our narratives write them off and rewrite their stories and they get conveniently erased . And these people continue to suffer and die. And our narratives tell us they are better off that way, that we have done the right thing, that there was no other way.

(dead, locked away, similar argument.)

Here’s the thing. Those people are just like us. No, they ARE. They are human beings just like us. No more, no less. They deserve our support.

We act like arbiters of who is human, we act like arbiters of life and death. We rewrite reality to make ourselves feel better and to justify our actions. We erase our responsibility towards others by pretending it is undeserved or impossible to fulfill.

When what we really need to do is give people- ALL people- the support they need. This is not impossible. This is encouraging a person to seek mental health services instead of reinforcing their (society- and depression etc- fueled) view of hopelessness and despair. This is providing appropriate supports in actually adequate amounts to the disabled and their caregivers. This is accepting that a different response is not necessarily a dangerous or deficient one. This is acting as if you actually care about people. This is accepting people as actually being people.

This is about changing the narratives.

No one would be better off dead if we actually did our part.

See also Between justice and genocide