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

Bodies and pathology

The medical model says it’s all medical, the social model says it’s all social/political. Well, what a false dichotomy. Medicine – it’s knowledge and practices – are social and the our social experiences are embodied and our bodies are unreliable.

/ Dr. Laura Mauldin

So, I read this quote the other day, and have been trying to find a spare moment and some spare energy to discuss why it strikes me.  Yes, medicine is social, yes the social is the embodied, but what?  Our bodies are unreliable?

Describing and defining our bodies in those terms is the very essence of pathology.  It’s the very complaint against the medical model itself:  the medical model pathologizes us.  So this quote, this comment, while showing the very real and true interconnections between facets of human life and thought and models, has at its core internalized medical pathology.

The medical model pathologizes us, all of us, sooner or later.  The medical model pathologizes all human bodies, sooner or later.  This is because the medical model pathologizes all deviations from the norm, the perfect, the ideal.  And no human body is “the norm”; no human body is perfect or ideal.

Of course, now is a good time to point out that many human models pathologize humanity.  (Distressing, much?)  The medical model is hardly alone in this.  Religion is high on pathologizing being human in general.  I was first consciously, inescapably struck by this fact when reading The Life of the Beloved- a very highly recommended Christian book, written to explain the essence of Christianity to non-Christians.  The Life of the Beloved distills Christian faith down to four basic tenants, and one is that we are all broken.  That humans by definition are broken, that God has broken us on purpose.  That our very essence is to be broken (unless we accept divine intervention to facilitate the necessary repairs) and incomplete (again, only fixed by the divine presence).  The idea of humans by their very nature needing to be fixed or repaired goes way back.

Plato really didn’t get the ball rolling in the right direction with his talk about shadows and caves. Ideals are not the essence of reality, so fabulous that our minds cannot fathom them in all their glory.  The world that we live in is not a poor approximation, a shadow play, of magical and mystical Ideals that we can never approach in this life.  That parable has it all backwards.  Reality is what we live in and with every day out there in the world.  “Ideals” are our crude attempt at summaries and our inadequate oversimplifications of what we experience in reality.

Seriously, Plato, what were you thinking?

We try to distill the real world down to ideals in order to better process and understand our experiences, and this distillation is highly politicized.  Ideals not only do not represent human experience as it is actually lived by anyone, but also do not represent humanity equally across the board.  Ideals are distillations based on the politics of power and privilege.  Who gets to be the ideal?  Who gets to be the standard?  Who gets to be the norm?  The ones in power.  The privileged.  The colonizers.  The elite.  After all, those with the gold make the rules, and the means, and the standards.  Ideals are tools of power.

“Normal” is just another kind of ideal.  It’s a kind of propagandized perfection, and all perfection is fake.  It can never be attained.  It isn’t real, people.

Nothing is perfect, nothing is finished, and nothing lasts forever.

Averages are tricksy as well.  Averages can rather ruthlessly ignore the amazing differences that being human encompasses, while providing meaningless standards that don’t fit any particular person at all.  Most people don’t fit the average, even if they aren’t the outliers of the sample, because of the range of difference involved.   Averages don’t correlate to real, specific human experiences.  Unless it is an average of people who are amazingly similar.  Guess who didn’t get taken into consideration there?  People who are different, maybe (because they still exist)?  I wonder why that is?  When the sample affects or is used to determine someone’s humanity, that is pure politics and power all over again.

How much time and effort do members of society spend trying to “fit in” with what is supposedly normal?  Or average?  Or default?  And while this is true in a general sense for everybody, how much more time and effort do marginalized members of society spend trying to attain that same goal?  How much of a person’s self-worth and external validation is based on passing as normal?  Or on passing more than “those other people”?  Talk about horizontal (and hierarchal) violence.

As long as the idea(l) of normality reins supreme in any human context, people will view not only themselves but also other people as broken and in desperate need of repair.  And as long as people are insecure about their own place in the power structures and places of privilege, they will focus on how much more broken other people are and how best to fix those other people.  You know, the ones who are so much more broken than we are.  I mean, we could use a little fixing up, sure, but those guys, wow,  we’d better start helping them out right away!  Let’s use all our ingenuity and technology and intelligence to fix those other people, all the while patting ourselves on the back for our generous selfless heroism, and being eternally grateful that at least we’re not as broken as they are.  Oh look- it’s one of those incredibly broken people being not quite as broken!  How inspiring.  It’s almost as if they could one day be normal like us.

Only nobody will ever be normal, because normal doesn’t exist.

That’s actually a very good thing.  It means we can stop trying to be what we aren’t, what we can never be, and stop fixating on other people- ie, stop behaving so amazingly pathological- and start growing into who we are.  As we are.  Because we are already human, already whole, already ready to go.

The field of medicine is social, yes.  Throughout the history of the long art, society and culture has surely informed, influenced, and inculcated itself into medical knowledge, practices, and practitioners.  And societies and cultures are in turn informed, influenced, and inculcated by the human experience of embodiment, which is humanity’s natural state.  Our bodies are our sole means of perception and interaction.  (Don’t get me started on Descartes- the mind does not exist without the body, okay.)  It is these very bodies which make us human and not something else.  It is these very bodies which make us real.

And these human bodies are the most reliable things in the world.  You can absolutely rely on them to act like human bodies, all the days of their lives.  The problem here is not the bodies, but the pathological expectations we impose on our bodies and on being human.  We expect our bodies to be perfect, to be normal, to be ideal.  But our bodies are none of those things and never will be.  Our bodies are human, in all the mindbogglingly non-identical yet equal ways that being human engenders. All our bodies are truly and fully human from the very start until the very end.  And our human bodies keep going, keep growing, keep unfolding and unfurling, keep aging, keep breaking down, keep changing and rearranging, all the days of our lives.  And that is a beautiful thing.  That is what bodies do.

It is utterly reliable.

It is exactly as it needs to be.

Ring the bells that still can ring, forget your perfect offering,
There’s a crack in everything- that’s how the light gets in.

/ Leonard Cohen

Autism and conformity

Re: this study/article on autism and gender conformity

Ok, first of all, here we go again, studying autistic people by asking their parents questions.  As if autistic kids can’t answer questions and autistic adults and teens don’t even exist.  (Also as if parents can read their children’s minds, especially when the parent is neurotypical and the child is not?!)

Second, I’m always disturbed by remarks about autism being primarily a male thing.  The casual and continued assumption that autism in females is rare is like perpetuating a myth and shows how little people pay attention to or understand autism in even gender-conforming women.

Third, I am also disturbed by remarks assuming that autistic people are unaware of social norms.  Not all are.  Some of us are hyperaware of them (whether we can decipher them meaningfully in realtime or not, whether or not they confuse the hell out of us).  Perhaps it has more to do with being othered by society no matter what, so why should those norms apply to us?  If we can’t pass as “normal”, if we won’t ever be accepted as part of “normal” society, then what does any “norm” have to do with us?  What allegiance could it possibly claim?

If gender conformity is learned as a way of fitting in (generally, by everybody, moreso than is usually realized), then is it any wonder autistics do not fit in? At some point, autistics have to preserve/ protect some sense of our true self,  some bits and pieces of us just as we are, unmodified.  And I’m not surprised to find that bit of ourselves is often not “normal”.

Autism and conformity, again.  People seem to be fascinated with how these two dynamics play out every time.  As if it’s somehow not the same story as before.