Traditional Family Values

I believe in traditional family values

It is my obligation as a family member
To do everything in my power
To keep aging or disabled family members
From having to live or die in nursing homes

This was passed down to me
As a child
Through the example of my great-uncle Lindy
Who moved in with my great-grandma
To keep her out of a nursing home
As long as he could
Even as she broke her hips multiple times
And became frail and bedridden
She stayed at home as long as she could
Because of our family values

Because of our traditional family values
I was able to visit her every year
In her tiny little house
Smaller than some of my apartments
But filled with love and kindness
Because she was a hard-core Hufflepuff
And she and her house
Had a long time
To become part of each other

What, you were expecting something different?
Then either you’ve grown too used to hearing
Right-wing propaganda disguised as tradition
Or you don’t know how many valuable traditions
A family can have

I am very traditional in my own way
Even if you can’t see it
And it is traditions like this
That are at the core of my value system
Traditions that come from love
Not from unthinking obedience to hate

So next time you hear the words
Traditional family values
Think hard
About your family’s best traditions
The ones that come from love
You might not have any
But you might
And you might be surprised what they are

And if you can find any such traditions
Then do all you can to take back the meaning
Of traditional family values
To apply to the love your family has taught you
Passed down through the generations
That’s what tradition, in its best sense, means

My Last Refuge

Dedicated to Ernest, Blanca, Vanesa, and David.  I hope you all made it out of institutions one day, and that you’re alive, and maybe even happy.

I hid my awareness from you
Because I knew if I gave a response
You’d abuse me more.

I hid my awareness from you
Because I’d seen what happened
To those who came before

I hid my awareness from you
Because restraint is known to be the worst
Physical trauma for an autistic child

I hid my awareness from you
Because I feared looking into your eyes
Inches from my face, so I stared through you

I hid my awareness from you

Because my mind was the only refuge I had
That you had not yet stolen from me
By tackling me to the ground and sitting on me
For the sin of not moving when told
Yes, my mind was still my refuge
And whatever it took
Whatever it took
I was not about to let you in

So you put your eyes as close to my face as you could
And you tried to force me to look into them
I looked through them
I pretended you weren’t there
I pretended I existed in a different world
A better world

A world where children weren’t strapped down at night
So that the night nurse didn’t have to bother with them
A world where people who showed fluctuations in their abilities
Were not accused of manipulating staff
A world where people whose entire bodies resisted invasion
Were not invaded anyway and then blamed for the results
A world where a tiny little autistic boy didn’t run into my room
Every night, silently pleading me to make the staff go away
So he wouldn’t be tied down for the night
A world where I didn’t have to listen
To what staff really thought of us
Since they gossiped in detail about patients
Right next to the isolation rooms

You got right in my face
So close to my face that one adult doing it to another adult
Would be seen as an act of aggression, even assault
And you demanded that I join your world
Demanded that I at least acknowledge your world
I refused

And the more you tried to force me to join your world
The more determined I was to get away

You called this manipulative
I called it survival
The first of many definitions
We would never agree on

The White Institution (circa 2002)

I walked down the street
With my eyes on the building of white
I knew they were like me
Autistic and trained not to fight 

They rocked behind bars and
I knew I belonged there not here
Not out on the streets
With the ones who had never known fear

My body moved forward 
To ocean with sand and with stars
But my thoughts, they went back
To the white institution with bars 

As slugs we might be
But the world it had fashioned a shell
Not home anymore
Not here, not on earth, but in hell

[Events 1999, first written circa 2002, written from memory 2014, May contain errors.]

My, sie’s really let hirself go…

My foot is cracked and bleeding from the cold
Yet there is beauty in the lines and cracks
My hands are gnarly, wrinkled, leathered, old
Yet every wrinkle hails unnumbered acts
They tell me to be pretty, to want more
“And more of what?” is always my reply
I’ve had a good long life, though I am poor
And poverty has been my shield and sky
I look into the mirror and I see
The greying hair, the laugh and worry lines
That come with living long and living free
For I have no consent to be confined
     They look at me and feel I’ve disengaged
     I celebrate surviving to old age


 

 

 

 

 

[By way of explanation:  I find myself fiercely, desperately, wanting wrinkles and grey hair and all the other signs that I have outlived every prognosis I’ve been given.  Other people fear those things, wanting to look young.  When I am old, every wrinkle and grey hair will be a badge of pride saying “I made it.” I have only recently, since diagnosis and treatment for adrenal insufficiency, begun to allow myself to dream of old age again, and what a beautiful dream it is.]

“Good” Institutions (2004)

The visitors came and talked today
About how wonderful this place was
No bars on the windows of this cage
Sparkling walls showed no shit or blood

They said everyone was treated well
The food was fresh and tasty too
The people could walk outside if they want
And then get better and go home

They extolled the virtues of this place
In language amazed and sickening
For it held its secrets, just as dark
As any torture chamber you’d know

How do I know this? Because I heard
It all from my table in the back room
Chained and drugged — invisible —
For the comfort of visitors everywhere

The Mind Bridge: A True Story

You saw me spinning outside
Along the edges of a dance
Asked questions
Were told I was crazy
The first thing you were told
Besides my name

We were so very different
And I had trouble communicating
But from the very first day we talked
You were making inroads nobody had ever made
Ever
Ever
Never in my life
Had someone peered into my mind
And seen me

We were only twelve years old
And you instinctively knew
That the way to communicate with me
Was to find books in common
And talk in metaphors
Gleaned from the pages
Of the books we had just read

It was A Wrinkle In Time, I recall
We classified people as
Meg-like or Charles-Wallace-like
Sandy-and-Dennys-like

For the first time ever I was able
To break out of non-communicative echolalia
By using echolalia from a book
I told you I was Mrs. Who
The character who could only communicate
By quoting the words of others

For a 12-year-old autistic kid
Who had never heard of autism or echolalia
I doubt anyone could have done better
Than we did that day
At building a bridge between our worlds

I didn’t recognize your significance
For a long time
In fact I ignored you
I was embarrassed sometimes
At your interest in me
I didn’t know what to make of it

You saved every telephone number
Of every mental institution
Every residential facility
I was committed to
Even for a day
So that we could keep in touch
No matter what

Nobody else did that
Not even the people
Who claimed later
To have been ‘so close to me’
None of them ever did that

But I’ve seen your daily planner
Full of crossed-out phone numbers
For mental institutions
That I have no memory
Of speaking to you in
Because I was too heavily drugged

When I became nonverbal on the phone
You were the one who devised
Impromptu communication systems
Cycling through the alphabet
Until I tapped out the letters
Not even my psychiatrist
Took me seriously enough
To do this for me
I cried

Then each of us tapped out
The rhythm of a prime number
You took two
I took three
You took five
I took seven
We would go as high as we could
My favorites were seven and eleven

You knew that the rhythm of numbers
Was one of my favorite things
So when I went nonverbal on the phone
You devised the prime number game
There were so many areas
Where we met in the middle
Despite our brains being quite different

I was a highly sensing and sensual person
And I brought to our friendship
A heightened appreciation for
Basic sensory experiences
That you had all but forgotten about
You even took up stimming
To understand the world
As I experienced it

You were undersensitive
And you lived in your mind
A mind full of mathematics
And ideas, and concepts
That were normally too high
For me to climb to
But you carried me up
Specially made ladders
To teach me graduate-level math
And make me think I could do it

You were so brilliant
That everyone knew it
Even in our gifted program
You were singled out
For special tracking
I’d never even heard of
The gifted of the gifted

No one was less surprised than me
When you won the International Science Fair
By discovering a new property of
The Fibonacci sequence
You weren’t just good at tests

I used to wonder what someone like you
Saw in someone like me
Who was already exgifted
By the time I began to know you well
I wondered how a mind like yours
Could see anything worthwhile
In a mind like mine

But the magic happened between us
When we each built a bridge
I built mine out of mud and sticks
And redwood cones
You built yours out of equations and proofs
And lots of geometry
And we were able to stand in the middle
Where the bridges met
Hold hands
And look out over the landscapes
Of our two minds

Nobody had ever built me such a bridge before
Nobody has ever built me such a bridge since
Until I saw the bridge
I had no idea how lucky I was

“I was content to be an object in your world”
You told me once
Commenting on the long time
When I couldn’t seem to understand
That you were offering friendship and love
When you weren’t sure
I noticed you were really there at all

How can an autistic child
Who has only known bullies
Masquerading as friends
Understand friendship and love?

One of my friends
When she was a teenager
Got so confused
By a genuine offer of friendship
That she painted a painting
Where the sky was the ground
And the ground was the sky
And all the colors were reversed
Then she broke down crying

Me, I just stayed wary, for years
When I was vulnerable around you, I waited
For the sucker-punch to the gut
That always came
When I was confused or overloaded
And the laughter that always followed

But the punch
And the laughter
And the ridicule
Never came

Instead of garbage
You handed me a flower
Instead of a locked door
You handed me a key

I unlocked the door
I stepped out into a world
Of living color
And I said goodbye
To the bully-friends
Forever

And I took your hand
And stepped onto the bridge
And we held hands
And looked at the sunset together
You standing on mud
Me standing on geometry
On a bridge
I have never seen the like of
Again