November 1, 2012

Happiness, for Autistics Speaking Day

Posted in Uncategorized tagged , , at 1:38 pm by chavisory

A couple years ago, in one of the most misbegotten autism awareness campaigns ever, named Communication Shutdown, people were asked to refrain from using social networking for one day, November 1, to simulate the communication difficulties of autism spectrum disorders, and that for everyone who pledged to do this, a donation would be made to charity.

This was a bad idea, because a whole lot of autistic people rely on social networking for communication and socialization, so getting people off the internet would actually be seriously counterproductive for the very people this was supposed to be helping.  And immensely silly, because being without Facebook in no way approximates the experience of being autistic.

I remember life without Facebook.  They’re not the same thing.  Not even a little.

In response, Autistics Speaking Day was founded, to use the internet to amplify our voices, rather than shut them down.  This is my first year of participation.

*****

One of the things that most enrages me when parents write about their child’s ASD diagnosis is lamentation that they’ll never be normal…as if normal is some kind of unit of measurement of what a life worth having is, above joy, integrity, authenticity, curiosity and passion, love, usefulness, or perception of beauty.

One of the things that breaks my heart is when they only ask “will he be happy?”  Because of course no one can say, and though I can tell you lots of things about what it’s like to be this, I can’t either.

I don’t think this is my most elegant writing, but it might be the best I can explain.  I hope it’s whatever comfort it can be.

It’s a sparkling, cool morning, right before fall.  I’m watching a little brown sparrow perform some kind of courtship dance and song on the branches of a honey locust tree, right outside of my favorite coffee shop’s window.  It’s a tiny, absurdly beautiful thing, and I’m pretty sure I’m the only one who notices it at the moment.  Which I like.

I am happier than I thought I’d ever get a chance to be.  It wasn’t always this way.

I live in a city I like, with people I enjoy.  I love the job that I do.  I’m a proud member of my union.  I earn a living in the arts—something that people tell you that real people don’t do.  I feel badass for this.  I’m doing something that I truly want to be doing with my life.

I have good friends, and I have more good friends than I once even imagined possible.

I love walks, museums, food, books, writing, music, traveling, Doctor Who.  I yell at the radio a lot during election season.

I actually feel like I’m living the life I was meant to.  I feel real in my own world for the first time in a long time.  It feels very strange, and very, very good.

A few weeks ago I was running a piano recital, and a little girl who takes lessons where I work got bored of listening and snuck backstage to talk to me.  She makes me laugh and I don’t have the heart to tell her she’s not supposed to be there.  We talked about books, and the presidential election.

Sometimes when I’m opening up the theater, or in the middle of a performance, or putting pianos away for the night, I get this incredibly eerie, but wonderful feeling of “This really is my life, and it belongs to me, and it’s where I’m supposed to be.”

Last night I went for a walk, and found, in the underbrush of the park that borders my nighttime walking route, a raccoon scavenging food for three feral kittens in the aftermath of the hurricane.  My jaw dropped when I realized what was happening.  While I watched this scene, a bat flew right by my head, twice.  I could hear its navigational clicking.  I can’t believe that most people don’t see and hear things like this.

And also—

Our rent went up again this year, despite the apartment actually being in worse shape than when we moved in eight years ago.

Our bathroom is disintegrating from water damage from a leak from the unit above us—again—that the city is incapable of forcing the landlords to fix permanently.  And the mice are positively indestructible.

I spent a couple months recently putting groceries on my credit card.  One difficult, underpaying job has followed another for most of the year.  Then my computer needed repairs I couldn’t afford but couldn’t go without.

I just re-qualified through the union for health insurance I can’t really afford either and may lose again in six months anyway.

I grew up being told that if I got a good education, I’d be comfortable and secure.  But the security that was supposed to be the predictable, deserved reward of this much work is nowhere in sight.

No one knew to tell me that I’d go insane in a job in which I didn’t have to work with my hands.  No one told me when I was growing up that there were countless ways to succeed in this life, countless right ways to live.  That you’re not rewarded with happiness for conformity to a path you weren’t actually made to follow.  That authenticity is a good bet.  And good thing, too, because it was the only choice I really ever had.

Other people my age have houses, children, backyards, dogs.  It is hard to watch this happen and know I may never be able to have these things.  But then again, this leaves me in not so different a position from that of a lot of people in my industry.

I do want a romantic partner, but don’t know how capable I am of sustaining such a relationship.  I want a family but doubt my ability to support one.   But if I never get married and have children, that will make me sad; it won’t make my life an unlivable tragedy.

I would like to live somewhere else, sometime, but worry about there not being enough work to support even myself.

And I’m scared for the future.  Of health problems I can’t afford.  Of ever losing my self-determination.  I don’t pretend that I’ll ever be able to retire in true comfort or security.  I don’t even let myself think about such a thing.

All of the above is true.  None of it cancels out any of the rest of it.  I love my life and I couldn’t wish for a different one.

And sometimes I go to bed at night thinking “God, I don’t know how long I can do this.”

But security isn’t happiness.  Normality isn’t happiness.

Things might not be this hard forever.  And they really might be.  And either way, I believe in taking joy wherever you can find it.  And that being who you are is worth it.  That everyone belongs somewhere.  That the world is full of so much beauty you might not believe me if I told you.

My coffee shop is across the street from the Cathedral of St. John the Divine.  You can see the parish building through the front windows, and I love the way the sunlight filters through the leaves of elm and apple trees and plays across the carved stone façade, faces of saints, angels, and monsters the old oak doors, the copper and frosted glass lanterns.

I could sit here and drink coffee and watch the light move across the cathedral buildings all day.

But I have promises to keep.

Advertisements

11 Comments »

  1. Sheila said,

    Love your writing and especially today’s blog! Not sure you will remember me but I spoke about my ASD son’s love of theater/muscials and how I wasn’t sure if he would be accepted into a dance class with neurotypical children, well he has and he LOVES the class! He comes alive in every Wednesday afternoon from 3:45 to 5:15! Thank-you for your words of encouragement!! And please keep sharing your thoughts, they are inspirational!!

    • chavisory said,

      Of course I remember, Sheila–that comment made my day! 🙂

  2. A weak afternoon sunlight winks on, off, on, off through the brown leaves blowing gently in the wind. The light falls through the dusty window onto the blue mosaic of tablecloth on my breakfast table. One long-haired black cat sits stock still on the pillow, watching the grey squirrels digging in the leaves. Another long-haired black cat, a younger twin, curls in a circle, paw covering his nose. The crackle of some plastic innards of the bowling bowl precede the rumble roll and crash of plastic pins. My son’s voice raises, “Go, Gutter! Go, Gutter! Mommy, Gutter is bowling!” “Can I have tea RIGHT NOW?” “I’ll come back when I’m thirsty, okay?” “The Government is bowling now, Mommy!”

    Your world is full of beauty. And our world is full of beauty because of you.

    • Sheila said,

      Amen Brenda!!

    • chavisory said,

      : ) Isn’t the world just stunningly cool when you look at it for what it is?

  3. Hannah said,

    I ❤ this post!
    x

  4. Nikki said,

    I love it. That light…my son sees it too. I need to remember that sometimes he can’t answer me because he is too busy seeing and hearing so much beauty. Thank you.

  5. Lovely.

  6. Your post is beautifully written and I appreciate your perspective. I am not one of those parents who lament their son’s diagnosis, however, I do need to share that life is not easy for my son.. or me. He can’t do what you can do. My son is severely autistic, he can’t talk, read, write or ride a bike. This needs to be taken into consideration if sometimes I cry…..
    Please also bear in mind…. many parents go through a process of coming to terms with the change of direction that life gives to us. Give us the benefit of doubt and believe that we will be on the same page as you at some stage in the future.
    Respectfully yours.
    Di

    • chavisory said,

      Hi Di–I really appreciate your comment and your perspective. Things are always harder for somebody else in this world, almost no matter who you are, and I do think it’s important to always remember that. I seriously look up to parents of severely challenged kids.

      What I want people to know, though, is that, whatever somebody can’t do or might never do in terms of what society considers important, there’s so much more worth living this life for. We can never know how rich a world someone might see, just because they can’t communicate it in ways that are obvious to us. And we can never know what someone will or won’t ever do based on what they can or can’t do now. Life is long, and our learning processes are different. I don’t think that any amount of learning or pleasure in the world is wasted.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: