April 6, 2014

At last…

Posted in Uncategorized tagged , , , at 11:51 am by chavisory

purple crocuses

 

April 2, 2014

A Call for Accountability

Posted in Uncategorized tagged , , , , , at 1:27 am by chavisory

To Autism Speaks and its supporters, for Autism Acceptance Day~

There’s a conversation that plays out over and over again, in the wake of the release of a PSA, press release, blog post, or video, painting autism in conventionally negative and dehumanizing terms.

Autistic people object that those descriptions do not fairly reflect the realities or value of our lives.  That while, yes, often it is hard, that’s not all our lives are.  That characterizations of “epidemic,” “tsunami,” or “national catastrophe” devalue our lives, and that we suffer when attacks on “autism” fall on us.  Which they do, always, because autism is not separable from us.  That we might wish some things were easier, but those issues need to be addressed with the complexity and nuance that they truly require to understand.

And invariably, someone will make the excuse that such rhetoric is necessary to raise awareness, to make the public feel a sense of urgency, to keep people interested, to get lawmakers invested in these issues, to raise money.

“But how does that fit on a billboard?  How do you put that into a one-line slogan?  Or a 30-second PSA?”

Guess what:  That is not our problem to solve.  It is not our fault, our job, or our responsibility.  It is not an excuse for you to malign our humanity and our worth.

It is not okay to demonize us and call our existence an epidemic, a tragedy, and a national disaster because that’s easier to fit on a billboard.

It’s not okay to instigate pity and fear against us because that’s easier than asking people to work to understand us more deeply.

It is morally and intellectually lazy, is what it is.  Since when does something being easier make it right or okay?  That’s what you’re saying.  That it’s easier on you to talk about our lives this way, so you get to, and our objections are meaningless.

Only…many, many autistic people have made themselves very clear about how awareness campaigns like this have done us more harm than good.

We understand that therapies cost money, that families need insurance coverage, that parents deserve respite, and that school systems need financing for the support services they’re required to provide.

But the beliefs about us that are inculcated—in the general public, in our family members, in our educators and therapists—by these kinds of ad campaigns, negatively impact the way we are actually treated by the medical establishment and in schools and therapy programs and by the people closest to us.  You don’t make sure a vulnerable population gets appropriate help and support by spreading vicious falsehoods about their condition, presenting them as objects of pity rather than full participants in their own lives, or disparaging their input on the actual effects of what you claim to be doing on their behalf.

The words you use about us have real-life consequences for us, and they’re not the ones you claim to intend.

This rationalization is arguably even more dehumanizing than the objectionable rhetoric itself—that we and the fullness of our lives are reducible to props for your awareness campaigns.  That our objections to misrepresentations of us don’t matter because they’re inconvenient to your ability to come up with billboard slogans.  That next to you being able to raise money in our name, the fact that the manner in which you’re doing so actually hurts us, is of no consequence.  That our ability to be treated like real, whole, present, self-aware, not stolen or missing or disappeared people is far less important than you having an easy time coming up with a catchy awareness campaign.

It is not our responsibility to be a sound byte for your convenience.  It is not our job to be the story the public wants to hear.  It’s not your kid’s job.

I won’t have to wait long for objections of ”But the low-functioning!  But the non-verbal!  But people who don’t have your abilities!”

IT’S NOT THEIR JOB, EITHER.  They are people; they are not storytelling devices, set dressing, blank slates or empty shells.  They have thoughts about their own lives; just because you don’t know what they are, does not give you the right to use them like that.

 

Autistic people talk and write a lot about our struggles.  Parents and families who are with us about acceptance and respect, talk openly and movingly about their challenges and their autistic kids’ obstacles.  We support each other in the hard things as well as the joyful.  You can do that without devaluing our lives or resorting to antiscientific, eugenicist alarmism.  The bloggers, activists, parents, and families of the neurodiversity community prove it every day.

Here’s what I think:  If you can’t figure out how to portray our issues and make a compassionate case for our support needs, succinctly and without resorting to dehumanizing us or devaluing our lives, then autistic people are not the ones who lack creativity, resourcefulness, communicative abilities, or empathy.

And just because I can’t necessarily give you a pat, convenient answer right now, on the spot, of how to best represent neurodiversity and autism acceptance in an easy-to-swallow PR campaign, does not make it an unsolvable problem that excuses your continued public relations war against us.  I’m not in public relations or marketing because that genre of writing is not my gift.  But it is somebody’s.  In fact, I’m pretty sure this is something people actually go to college and grad school to learn how to do well—to represent the message you wish to convey to the public cleverly and concisely.  I’m pretty sure that businesses routinely actually hire and pay large salaries to people who do this professionally.  I’d be willing to bet that you already do so, in order to craft the message you have so successfully and insidiously.

Better messages have been crafted in social media campaigns, for the purpose of countering your own, by autistic people, neurodiversity bloggers, and parents with no budget, training, or free time.  Who are disabled, mentally ill, in chronic pain, who work full-time, who are in college or grad school, who are raising high-needs disabled children, or some combination of all of the above.  Other organizations don’t seem to have a problem, either.

So you can do better.

The problem is not that the right message is too hard a story to sell; the problem is that the message you actually believe and wish to propagate is wrong.  It’s not that you couldn’t do the right thing if you put your minds—and voluminous advertising budget—to it; it’s that you don’t really want to because you don’t believe in it.

You have the budget to be making media campaigns like this, if that’s what you wanted.  You have the resources to be spreading awareness like this:

It’s not as if the truth isn’t dramatic or interesting enough:  That we have always existed, but only in recent decades provoked this intensity of mingled fascination and alarm.  That our society has quietly and systematically marginalized and excluded us on the basis of our cognitive, movement, and communication differences for centuries, pushing us to survive on the outskirts of society. That with the understanding of these traits as neurologically-based rather than the result of kidnapping by fairies, the stigma and scapegoating has actually focused and intensified.

That generations of us have been written off as uneducable and incapable of communication, disappeared and institutionalized. That it is still happening even though professionals and policy-makers have had every opportunity to know better by now.  That we are abused and bullied at devastating rates.

That under such hostile circumstances, some of us have been the foremost geniuses of science, math, music, and art.  We have made some of the most revolutionarily important contributions to humanity in physics, technology, and engineering.

We keep surviving, keep creating, keep loving, keep standing up for each other, keep believing we are actually worthy of a future.  We remain obsessively joyful.

That we’ve been so misunderstood and misinterpreted that most popular and professional characterizations of us are practically the opposite of the truth.   That it is routine and accepted for our families to be taught to fear and hate the way we are.  That you do not even begin to understand what you would rob the world of, to have it bereft of people like us.

I think that’s a pretty fascinating story, and urgent and important.  I know it’s more astonishing to me than practically anything you could make up.  It’s just one that requires a bit more self-reflection and active listening from your target audience than the easier one of rallying to defeat a common enemy.

As to how it fits on a billboard?  I don’t care.

If you are listening to our stories, if your intentions towards us are truly good, stop making us the targets of your laziness and lack of creativity.

The way we are is not the enemy.

March 26, 2014

Spring under construction

Posted in City life tagged , , at 12:34 am by chavisory

under construction

March 25, 2014

Unintentional spam-trap poetry

Posted in Uncategorized tagged , at 7:58 pm by chavisory

As I skim through my WordPress spam trap every couple weeks and delete dozens and dozens of obviously spambot-generated ads to make sure that a genuine comment hasn’t been accidentally excluded, occasionally–very occasionally–I’ll find that one of the spambots has generated something unintentionally profound.  For your amusement I thought I’d share a few of the more poetic efforts of the Louis Vuitton knockoff-selling robots…

For added enjoyment, I recommend reading in your head in the voice of either Carl Kasell, William Shatner, or Sarah Palin.

***

you cogitate roughly feat it in the many group can be a bit
writer roughly trend. Fashions are constantly
on the offbeat take. nigrify is a bless that it’s author of who
you are mistreatment the size is stolen. If you wish to get

all in one place. Michael Kors Handbags in lengthy touch with the body
structure. ball is one of a electronic computer to sales outlet, be doomed to talk
over wearable size charts to help the runners
by informing them when you favor the bottles upside kill, you will upgrade this financial gain for you.

Many online purchases purchasescarefully. Do not

***

When some one searches for his necessary thing,
therefore he/she wants to be available that in detail,
thus that thing is maintained over here.

***

I feel you’re aware methods to create
people hear that which you must state,
especially with an matter that is so essential

March 11, 2014

“Exile and Sound,” at NeuroQueer

Posted in Uncategorized tagged , , , , , , , , at 5:48 pm by chavisory

I have a guest post up this week at NeuroQueer:

I’ve been realizing how much I need and miss the influence of natural sound in my life.  It’s like the cadences of those things are the language that my emotional concept of the universe was wired in.  I need it in a way so deep I don’t even know where to begin or how to describe.
It’s strange to think of being starved for sound in New York City, but it can feel that way.  The city is so abundant in every other variety of overstimulation imaginable, but incredibly poor in that one, although there’s plenty of noise.  It’s not the same thing.

spring robin

Visit to read the whole thing!

March 7, 2014

This I don’t believe

Posted in Uncategorized tagged , , , at 2:21 pm by chavisory

Less often than I used to have the time for, but still on a fairly regular basis, I wind up in debates with atheists online, when I protest some ultra-generalized hysterical but maddening mischaracterization of Christianity or of religion in general.

Just for instance:  “But Christianity teaches that women are subordinate to men,” and I blink confusedly and go “…wait, what?”

Because mine didn’t, and doesn’t.

I ran across this graphic a while back….

I'm an atheist

[Graphic reads: "I'm an atheist.  I believe the existence of any deity has never been proven and is unlikely to ever be proven.  I believe that good can and should be done without worrying whether or not you've done sufficient good to be rewarded."]

And the funny thing is, I could just as easily say the exact same thing as a Christian.

In fact, most of the time, most of the things that I’m presumed to believe by aggressive atheists, if I identify myself as a Christian, are not only not the case, but nonsensical to what I actually believe.

And while what I do believe in is more difficult to verbalize, what I actually don’t believe in is easy.

*

I don’t believe God is a bearded magical guy who lives in the sky.

I don’t believe the existence of God has been proven, or is likely to ever be.  I’m not even particularly sure that it should be, were it even possible.

I do not believe in doing good or being decent to other people only because some authority tells me to, or offers the reward of heaven or threatens the punishment of hell.

I probably don’t believe in heaven or hell as literal places at all.

I don’t believe that the way you get sent to either one is by sufficiently appeasing or pissing off God, or for believing or not believing in the right religion or the right deities.  I don’t believe that because I (obviously) think my beliefs are true, that other faith systems’ beliefs must necessarily be false.

I don’t believe in a God who particularly enjoys punishing people for normal experiences of being human, or who rejects people for who they are or who they love.  I don’t believe in a God who demands an unreasonable level of perfection or obedience to an archaic and unchanging system of rules.

I don’t believe in a God who demands that we not question or doubt or use our capacity for critical thinking.

I don’t all that much believe in what most people think of as magic or the supernatural.

I don’t believe the existence or action of God is necessary to explain what simply isn’t understood by science yet.  I don’t believe that the wonder or beauty of creation or the natural world is dependent on us just not understanding how it works.  I don’t believe that what we don’t understand yet is particularly strong evidence for the existence of God.

I don’t believe that the reality of evolution is in any way antithetical to anything truly important about my religious beliefs.  I really, really don’t.

(So I don’t believe, either, that the fact that neurological capacity for spiritual experiences can be shown to have evolved, in any way undermines or contradicts the authenticity or significance of that experience.)

I don’t believe the Bible is the inerrant word of God.  I don’t believe the Bible was written by anyone but people, who had historical and cultural contexts, histories, emotional lives, and agendas of their own.

I don’t believe that morality can only originate in religion.

I don’t rely on a pastor to tell me what to do or how to think.

I don’t need to believe in a heaven or an afterlife to escape fear of death.  (Which is not a particularly effective strategy anyway—I still fear death.)

I don’t need to believe in an all-powerful protector in order to not fear life.

*

So let’s go ahead and get past this part of the debate:  these are the things I really don’t believe.  If those are the only terms in which someone else can understand what religion is or what its significance might be to a person or to a culture, that’s not my fault or a weakness in my belief system.  I am not under any obligation to say “Oh, you’re right, of course, my faith system is what you say it is regardless of how little you understand about the actual experience of it.”

I’m not trying to convert anyone, to convince you to believe anything you have no genuine inclination to.  And I’m not arguing that religion shouldn’t be criticized when it exhibits real problems or when real harm is done in its name or under its influence, but relying on one-dimensional caricature to do that, insisting that religious belief by definition consists of things that for a lot of people it really doesn’t, is as unfair as it is unhelpful.

Describe the God you’ve rejected.  Describe the God you don’t believe in.  Maybe I don’t believe that God either.” —Timothy Keller

February 18, 2014

49th Street Reflected

Posted in Uncategorized tagged , , at 2:11 am by chavisory

49th Street Reflected

Evening on W. 49th St., on my way to the show a couple weeks ago. I was just trying to capture those entryway lights against the color of the sky and the bare trees; I didn’t see until I uploaded the picture that I’d caught that mirror image on the window I was leaning against.

February 14, 2014

#LoveNotFear

Posted in Uncategorized tagged , , , at 12:51 pm by chavisory

#LoveNotFear

flashblog-header

Boycott Autism Speaks is running a flashblog today for Valentine’s day called #LoveNotFear.  Submissions are closed, but you can read and share on Facebook, Twitter, and Tumblr all day!  I’ll have a post up there later today.

February 11, 2014

I have really complicated feelings about exhortations to tell girls they’re smart instead of beautiful, and also why I’m not a Ravenclaw

Posted in Uncategorized tagged , , , , at 4:16 pm by chavisory

complimentmybrain

{Moving image depicts Dr. Christina Yang from the show Grey’s Anatomy, gesturing dramatically and proclaiming “Oh, screw beautiful, I’m brilliant!  You wanna appease me, compliment my brain!”}

The title of this might be me at my most inarticulate, but I’ve got some complex emotional history here.

I’ve see this screencap from Grey’s Anatomy flying around Tumblr a lot lately, with kind of conflicted feelings.

And I want to cheer for it.  I want to agree with Christina in this scene.  I want to clap.  I do.  I can’t.  My heart sinks a little instead.

When I was growing up, I was over-appreciated for my brain—or what people wanted out of it—and not much else.

And I get why, for a lot of women, so much importance has been placed on physical beauty and a very narrow definition of sexual desirability by culture and media that to be told you’re beautiful can be diminishing, or a denial of any other aspect of personhood as vital or valuable in a woman.

But another kind of woman got written off early and entirely in the department of physical desirability, and got told intensely and persistently that our intellect was the only valuable thing about us.

And that can be just as objectifying as the inverse.  To be treated as if your body, your sexuality, is a mistake, is off limits from being considered an asset or a real and true aspect of our personhood or something we should even like about ourselves.

Because my physical experience of the world is as totally intrinsic to the kind of person I’ve become as my intelligence is.

There’s not really any aspect or component of a person of which it’s alright to say, “You may be valued for this alone.  This is all of you that matters.”

So yeah, I can understand the frustration of other women at being called beautiful as the highest possible compliment, when though that may be what society values, it’s superficial to what they see as their true selves.

That’s exactly how I feel about being called “smart.”  It’s the only way I was ever allowed to be valuable or worthwhile, but it’s almost completely superficial to what I actually value most about myself.

When I was growing up, it was my intelligence that was made a commodity to other people.  And that was all of me that mattered.

For a long time, I was resentful that intellect and insight were not valued or celebrated anywhere near as much as superficial beauty or things like athletic talent—by society, by the media, by the school system—because it was all I had going for me.

And then a time came when I was so, so sick of hearing how smart I was.

In retrospect, a lot of my academic accomplishments feel like stupid human tricks, compared to the qualities that I’m really proud of nurturing. And yes, I was actually proud of them, too, and wanted recognition for them.  But on some level even at the time, I knew that they were just the game I could play.  They were the game I could win, the hoops I could jump through.

In an end-of-the-year Thespian troupe party my senior year of high school, we had a ritual where the whole troupe sat in a circle, and we were supposed to go around one by one, and use one word to describe each one of our classmates.

I forbade anyone to say I was smart.  I frakking knew that already, and getting told what you already knew wasn’t the point of the exercise.  I knew that ad nauseum.  Tell me anything else.  Prove you know me better than that.  Tell me that something about me matters to you.

People said it anyway.

(Our teacher, blessedly, did not.)

There’s also this thing that happens where, once someone has gotten the impression that I’m so intelligent, expects me to not have a soul, a conscience, a sense of fairness, or a heart, and winds up really confused and disappointed when I do.

Other people’s perception of my intelligence has been over-leveraged as a survival tactic and bargaining chip for autonomy and personhood, for me to really be able to treasure it much for myself anymore.

***

I value my physical beauty now, idiosyncratic though it may be.  I love finally feeling at home in my body and the way it moves.  That’s a wondrous thing to me.  I love being made to feel beautiful by someone who really means it about the way that I really am.

I like looking in the mirror and liking what I see.

And I won’t feel that it’s some kind of a betrayal of womanhood to actually value that about myself.  After so many years of having that ability discouraged and confounded in so many ways, I get to have that.

***

Just as valuation of a particular standard of beauty above all other female attributes both devalues girls who can’t meet that standard, and devalues everything else about girls who do…how is valuation of intelligence above any other personal attribute not likely to devalue girls who don’t meet some conventional, one-dimensional standard of that?

I wish we could just stop hacking people up into pieces that are valuable and not valuable, acceptable and not acceptable.

I fear that this trading valuation of physical beauty for intelligence, really just winds up telling some girls “You do not count in this way.  Your physical experience of the world and your sexuality aren’t really things that deserve to be taken into account, because you’re a brain, and that’s what matters about you.”

January 30, 2014

Winter river

Posted in Uncategorized tagged , , , at 3:41 pm by chavisory

winter hudson riverDog-walking along the Hudson in upper Manhattan yesterday evening.

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