Tag Archives: existence

When Orange Speaks Louder Than Words

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When Orange Speaks Louder Than Words

Mel wearing an orange shirt, dark glasses, and a brown Aussie hat.Fey and Mel nuzzling faces while Mel wears an orange shirt.Mel with only hir torso and arm visible, wearing an orange shirt with an orange crocheted shawl hanging off hir arm.An orange crochet project sitting on Mel's lap, bamboo yarn with a lot of shell stitches that is going to become a cardigan, with a metal crochet hook with a green handle.

Orange is the color of Autism Acceptance Month.  Because it’s the opposite of blue, and blue is the color that everyone is told to wear for Autism Awareness Month.  Which kind of sucks because my favorite colors, and nearly all of my clothes, are brown and blue.  And I used to really hate orange.  Sometimes I hate the term Autism Acceptance, too — I like the idea behind it, but I don’t like the way the term has become a meaningless buzzword in some people’s mouths.  Whether it’s parent groups who throw the word ‘autism acceptance’ around to sound current but don’t actually accept the slightest thing about their autistic children, or whether it’s autistic people who’ve fallen in love with the words and forgotten the meaning.  Either way, I like it as a concept but not as a buzzword.

Anyway, I hated orange.

Then my father died.  I was very close to my father.  As a way of remembering him, I began to wear his clothing. My mom sent me a bunch of his shirts, suspenders, watches, and other assorted clothing and jewelry.  And I began to wear his clothes, regardless of color.  

My father wore a lot of very colorful clothes.  I had to get used to that.  But most of the colors he had look surprisingly good on me.  This did surprise me because his skin was a very different color than mine, much darker.  But someone pointed out that while our skin was different in terms of darkness, the actual hue of our skin was nearly identical.  Which goes a long way to explaining why nearly any color that looked good on him, looks good on me.   The only place we seem to go wrong are on certain pastel shades that just look better against his shade of skin than mine.

Wearing my father’s clothes is more than a symbolic act of remembrance.  It helps me get inside of him.  It helps me find him inside of me.  It helps me find the parts of him that I didn’t even realize were there until he was already dead.  There’s something about it that makes me love him even more, makes me comfortable in my own skin, makes me see the many things about us that are alike as well as the differences.

And orange, most of all, has come to symbolize that entire process for me:  Finding something totally unexpected about my father that was also inside me all along.   Finding that many shades of orange (mostly darker shades, definitely not pastel peach shades) look good on me, sounds like a superficial thing.  But when it’s in the context of my father’s death and the meaning he had and continues to have in my life, there’s nothing superficial about it.  It’s about as deep as things get.  And that’s unexpected as well.

By the way, one thing I never take off is the circular necklace you can see in one of the pictures.  It’s a see-through locket containing hairs from my father’s beard, that he agreed to send me before he died.  I take it everywhere with me, and even a year ago when I was too delirious to understand that my father had died at all or what the necklace was, I still managed not to lose it despite losing some very important items during the same hospital stay. 

So I now appreciate orange a lot more than I used to, and I now have more orange things to wear this month.  Both because my father gave me orange clothes, and because since coming to view orange as symbolic of all these things, I have started making myself more orange clothing.  The shawl pictured above is something I crocheted myself, and the crochet project I am working on in the last picture will be a cardigan made out of bamboo yarn.  I’ve made other orange things as well.

I had other things planned to post this month.  I had a lot of things planned.  Like the song says, “Life is what happens to you when you’re busy making other plans.”  I’ve had tube problems and problems with my steroid levels that have taken up a lot of my time and energy lately.  So I think the very long post I had planned for Autism Acceptance Month is going to turn into a Blogging Against Disablism Day post for May 1st.  And this post will have to suffice for an Autism Acceptance Month post — right at the end of the month, of course.  But all these problems have made my inertia twenty times worse than usual, so getting posts out at all is a miracle and it’s a good thing that the posts I am talking about that I’d planned, are mostly already written months ago, and then stored in anticipation of this month.  Because I rightly guessed that I wouldn’t be able to write much for whatever reason when the time actually came around to have things ready.

Orange also stands for fire.  I used to think that fire meant the kind of anger problem I used to have, and I was afraid of my own fire.  But someone told me that my anger problem was misdirected fire.  That real fire, properly channeled, could mean something closer to passion.  And that’s when I began to truly integrate fire into who I was, and it flowed through me, and it was something I’d been missing for a long time.  Adrenal insufficiency sometimes feels like it tries to drain me of that fire, when I get close to an adrenal crisis, it’s like everything goes flat and deflated.  But when fire is properly flowing through me, it feels like finally being alive again.  So that’s another thing orange has come to mean to me. 

The things I’ve found about my dad in myself, by the way, are not irrelevant to Autism Acceptance Month.  My father and I are both autistic, and we share a lot of traits.  One of the traits that we share that I treasure the most, is our tendency to communicate with objects.  As in, both communicate by means of using objects, and experience communication (it’s the only word that really fits) between ourselves and supposedly-inanimate objects.  I knew to some degree this was true of my father, but it became much more apparent as he was dying, and even more apparent when I received many of his belongings after he died.  I arranged some of them into a memorial shrine, and any time I want to see him all I have to do is look through the objects and I can always find him by sensing the connections between them.  

Not a lot of autistic people talk about this, but a lot of autistic people very much do things like this.  And many people have told me they look at objects differently after seeing how I have interacted with objects after my father’s death.  People are used to seeing objects as dead in themselves.   And they are used to seeing interaction with objects as inferior to interactions with people.  They are used to seeing attachment to objects as an ‘attachment to material possessions’, like a consumerist thing.  So they are legitimately surprised when they see someone doing it completely differently than anything they’ve ever seen before.

Some people react well to that and some people react badly.  I’ve been lectured more times than I care to count, on how objects are not really alive and you can’t really interact with them.  Usually they talk to me in the same way they would talk to a five-year-old who believes in unicorns.  Other people have explained anthropomorphism to me at great length, totally neglecting the fact that I’m not in fact attributing human qualities to objects.  I interact with them, they interact back, I see them as alive, but being alive is not a human-specific quality.  And they are alive in a very specific way that has nothing to do with humans and nothing to do with the actual categories of animate and inanimate beings in general, and I interact with them as what they are to a degree that most people who see them as dead probably don’t. 

And usually the person doing the explaining manages to be incredibly condescending both to people like me, and to cultures that don’t differentiate as much between living and non-living creatures as modern Western culture does, or differentiate much differently.  The view is that we’re just simple-minded idiots who don’t yet know enough, aren’t yet highly evolved enough as a person or as a culture or both, to have figured out what Western science knows.  Never mind that their view of how we see things is usually mind-bogglingly simplistic in and of itself.

For some reason, such people seem to feel almost compelled to force their worldview on me.  Like I’m just one tiny little person who happens to be moving through a world full of people who mostly don’t share this worldview.  I’m hardly a threat to anyone.  But they seem to feel threatened enough that they have to quash any sign of difference anywhere they see it.  And I’m not just talking about nonautistic people, I’m also talking about autistic people who don’t happen to share this particular autistic trait.  (Because no autistic trait is universal, and quite often autism involves opposites a lot — so that both a trait and its polar opposite will be common autistic traits.  Sometimes even both showing up in the same person at different times.)

But what really amazes me are the people who are willing to have their mind changed about objects after they see how I interact with them.  They see that there is respect there.  They see that there is depth there.  They see that like many autistic people with similar traits, I move through a very sensual world full of richness and depth.  They see that I use objects to communicate with other people, to say important things that I can’t say with words.  They see the way I use objects to remember my father and to interact with him after his death.  They see that there is something deeply real here.  And they come to respect that, even when they don’t fully understand it.

And I never set out to cause them to respect me.  Any more than I set out to convince one of  friends that being gay is not a sin.  I actually told her I didn’t mind that she thought it was a sin, as long as she didn’t interfere with my life on that basis, and went on living my life around her as I was.  She said that just knowing me changed her mind about gay people on a religious level and on other levels.  And that’s not something I ever set out to do, in fact I was careful not to set out to change her mind.  But it happened anyway.  And that’s how this thing with the objects has happened:  I never intended it, in fact I never would have known the change was happening in some people if they hadn’t told me in private that I had changed their entire way of viewing how people interact with objects. But they did change their minds because of me, intended or not.

And I think that’s really important.  Sometimes people don’t come to accept autism — or aspects of autism, as the case may be — because we’ve been shoving things in their face.  Sometimes they come to accept autism, and autistic people, and autistic people’s ways of being in the world, because they spend enough time around us that they get to see us in a well-rounded context.  Not in terms of rhetoric but in terms of real life.  And seeing us, seeing how we live, seeing that our ways of doing things are legitimate even if they’re different than anything they’ve ever imagined before, that can be far more important for some people than anything we could have to say about the matter.

If saying things weren’t important to me, mind you, I wouldn’t be a blogger.  I may be a reluctant writer at times, but I’m definitely a writer.  But I also think there’s things in the world far more important than words.  And I also think there’s many different ways to communicate something, and writing is only one of them.  Not everyone can write, but everyone can make a contribution, deliberate or not, to the acceptance of people like us in the world at large.  And as writing this kind of post has become more and more difficult for me — it was never easy, but it’s getting much harder with time — I’m learning to very much value my ability to just exist and get things across by the way I exist around people.

There are a lot of things about being autistic that are hard, and I have to confess that lately it’s the harder things that have caught my attention more often.  The difficulty of keeping in touch with even my closest friends, to the point I’ve become almost completely socially isolated lately.  The ever-increasing level of inertia, which has snuck up on me because it looks very different after severe adrenal insufficiency completely reshaped the way I experience stress on a subjective level.  The stress levels that come not from emotional stress but from the sheer strain of having to function on an everyday basis — walking from one room to another, getting in and out of bed and chairs, going to the bathroom, making words, changing feeding tube dressings upwards of twelve times a day, going to new places that are visually overstimulating, anything involving getting information into or out of my brain, thinking on an intellectual level.  Things that most people don’t even know are skills, let alone difficult ones, because most of them are done automatically.  And all of these things are contributing to it not always feeling great to be autistic lately.

But orange brought me back to my father, and my father brings me back to objects, and objects bring me back to that rich world that my father and I both take part in.  Which brings me back to the way that just being who I am in front of people has changed their entire way of viewing objects and people’s relationships with them.  And that’s the good side of autism, and this is one of many ways that autism acceptance — the real thing —  can happen.  One person at a time, through living our lives as authentically as possible so that people can see exactly who we are and how we do things.  And when they see that, when they see who we are and how we live, some of them come to accept us on a deep level.   And not a lot of people are talking about that.

So I guess I’m glad for orange after all.

Unfolding

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Me with Fey sitting on my shoulder, and a brown and yellow afghan in front of me.

Me with Fey sitting on my shoulder.

Sometimes I want to unfold
The beauty of the world
As if it was the most intricate
Origami flower
That had ever seen the light of day

Then I want to wait
And wait
Until the flower blooms for real
Until its velvet black blossoms
Tinged with purple edges
Grow fuzz that you can run your hand over

And I want to hand it to you
And watch you rub the fuzz
Against your cheek
Against your lips
Against your nose —
The yellow-black stamens tickle

And then fold the flower
Back into paper
And put it in my pocket
For safekeeping

I would make more of them
And write secret notes
That only some people could read

They would say things like:

“The most beautiful things
Are concealed all around you.”

“You are a flower and
This is how you become real.”

“You are unfolding
Just like this.
Don’t hurry,
Don’t wait.”

I would hide them in plain sight
And I would hide them in places
That only the curious and observant
Would bother looking

I would hide them in places
That can only be found
When doing shit work
For 22 cents an hour

I would hide them so that each person
Stood a chance of finding at least one
Just one
That told them what they needed to hear
Right now
Just then

Unfold them, they become real flowers
Fold them, they become folded paper
You can do this as many times as you need
Because they are magic flowers

And if you get good at looking and listening
With more than just your eyes and ears
You will find these creations everywhere
Left by someone
With far more magic
Than I will ever possess

You know when you find one because
Suddenly something ordinary
Becomes extraordinary
Suddenly you’ve been let in on a secret
About something you’d seen before
But never seen before

It can be anything from
A spray of mud on your pants
To a pair of decorated crutches
To a butterfly

It doesn’t have to be pretty on first sight
Many times it isn’t
Many times it seems horrible
Until that flash of inspiration
When it unfolds into a flower in full bloom

And then every texture is like suede
And every color is like the deepest blue before dawn
And every taste is like boiled collards with butter
And every smell is the fur behind a cat’s ears

I wish I had the magic necessary
To make these things myself
To fold reality into paper
And leave it everywhere for people to find

As it is, all I can say is
Someone has already done it

You can find these magic folded papers
On the inside of a zero
In the yawn of a kitten
In a feeding tube
In a wadded up rag
In a tangled old root
In a leaf that skips down the sidewalk

And all of them are flowers
And all of them are there to tell you
There is more in this world than you can ever see
There is more love
There is more light
There is more beauty

And you are part of it
Always
Even
(Especially!)
When everything seems to be
Crashing down around you

Can you accept
This magic spell
This gift
From the world
To me
To you?

An Antidote to X-ing

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This is intended for the Disability Blog Carnival. The topic this month is, “I am.” The carnival is posted at Emma’s blog.

I’ve posted many things like this before, but I don’t know where they are, so I’m writing it over again in slightly different form. A little repetition of this concept never hurt anyone anyway. :-)

(See this entry by Anne for a better description of X-ing than I could ever hope to write at the moment, as well as a broader description of what I am talking about in this post.)

An Antidote to X-ing

It is not arrogant, stupid, foolish, bad, meaningless, or wrong to say that you exist.

There can be a lot of very strange patterns in the rest of the world, some of them involving people, some of them not, some of them seeming to come from inside of you, all of them basically boiling down to the message, “You do not exist,” in one form or another.

Especially if your existence is not something some people want to know about.

Especially if you are in one form or another dissenting from the views of seemingly very powerful people.

Especially if you are accustomed to taking people at their word, even when their word is, “You do not exist.”

Especially if you have been trained to endlessly repeat that mantra for them. (You may even have been taught to repeat it to others, and thus, for each moment you do that, go through the motions of that same destructive pattern.)

Especially if you have been taught that reality (especially the piece of it you inhabit) is upside-down, inside-out, and backwards from what it is.

Especially if you have been taught that existence is unimportant.

Especially if you don’t fit some usual pattern of existence that most people are looking for.

Especially if you have been led to believe that existence is only for people something-er than you. Cooler, smarter, better, stronger, whatever. That for the little piece of reality you are to exist without apology or shame, is arrogant or uppity.

Especially if you have been led to believe that to exist, you have to do, or understand, something complicated, something abstract, some grand and enormous theory about the world.

Especially if you have been trained to be the plaything of people who think that power consists of deluding themselves into believing they’re warping existence to fit their egos.

Especially if you have been trained to ask permission, and apologize, for something as simple as breathing.

Especially if you have been trained to view an assortment of superficial traits as who you are, by people who for whatever reason believe that themselves.

Especially if you have been taught that you have to know who you are, to say that you are.

Especially if you have been taught that existence has to come in a package of intellectually rigorous words all lined up in rows and stuffed into endless books to be devoured by an elite who have access to them.

Especially if you have been taught that existence is some other kind of secret, rather than something that is going on around all of us, all the time.

Especially if you have been taught that asserting your existence is somehow the same thing as the hubris in claiming that the flimsy imaginings of a vain ego are important and real and central.

Especially if your existence is one of those frequently deemed worthless, inferior, defective, and overly expensive.

These things can seem to weave a complicated web around you, and that can seem to control you, distract you, make your mind run in useless circles every time you come close to the idea of existing.

That can seem very complicated indeed.

But one thing, is very simple.

You don’t have to even think it, if even the thought of your own existence triggers some cascade of misdirection.

But it’s there.

It’s always there.

And that fact can’t be taken away.

It’s a very simple fact.

But simplicity is a strength here, not a weakness.

This fact is very powerful.

It unravels all that complex nonsense and shows it for what it is (even with all the complex nonsense in the world trying to claim otherwise).

It’s simpler than even the two words used to describe it.

That fact is:

“I exist.”

Without that, all the ideology in the world will be useless at best, and backfire at worst, becoming part of that strange pattern of destruction.

The more we are told not to exist, or that we don’t exist, then the more we need to assert our existence.

Not necessarily in words.

Not necessarily in ways that everyone would understand.

But certainly in ways that are active and meaningful, and going on from there.

I exist.