March 16, 2017

Coping with the world–yeah, we get it.

Posted in Uncategorized tagged , , at 1:58 am by chavisory

{This post references the comments made here.}

Once, when I was still a stage management intern, I was assistant stage managing a show on which I was having a lot of trouble and just generally felt like I couldn’t keep up. Some of the reasons why I was having such a hard time under those particular circumstances are much more clear to me in retrospect, and some are honestly still a mystery. There were blind spots and skill deficits on my part involved. There were certain ways in which I was ill-prepared that both were and weren’t my fault. There were other factors at play that didn’t originate with me at all. But it certainly wasn’t that I was just being lazy or not trying or didn’t care enough.

I was having a talk about it with the production stage manager one day—I could see well enough even then that she was overwhelmed and unhappy herself—about why I was having so much difficulty doing the job she expected from me, and she said to me something along the lines of:

“You know, you’re going to have to take jobs sometimes that you don’t love just to pay the bills.”

I have possibly never wanted to hit someone in the face so badly as I did right then.

Not just because that was so not the issue. Not just because she was displaying no comprehension at all of how hard I was trying but just hitting some kind of internal brick wall that I couldn’t fully comprehend. Although both of those things were true.

But because… doing what I had to do just to get by, pushing myself into things that I didn’t really want to do because I didn’t think I had a choice… had been my whole entire fucking life for almost as long as I could even remember.

She said it the same way that people had always tended to say painfully obvious things about my own life to me as if they were concepts I’d just never been presented with before:

“Emily, you have to understand that not everyone is like you.”

“Emily, you’re going to have to learn to work with people different from you.”

“Emily, you have to realize that not everyone can do what you do.”

With all due respect: No shit, Sherlock.

I was rather overly familiar with the concept that I was going to have to do things I didn’t love to get by. I’d done a lot of jobs I didn’t love, and I would do a lot more. I’d done a lot of things that were hard and unpleasant and violating just to prove I could or would do anything I had to do. I had done awful things to myself.

And she had decided I was just being snotty and spoiled instead, when actually she just had no idea.

The way I felt in that moment—that violently sinking, helpless, unspeakably sad feeling of hearing your whole life erased in a single instant, in a single arrogant comment, and knowing that nothing you can say to defend yourself will matter—is about the same way I feel when we write intricately and agonizingly about both the internal and external obstacles we face as autistic people, about the injustice and damage of being erased from our own lives, about our rights and choices being made contingent on how well we can just pretend not to be disabled, and someone says something like

“It’s about ability to cope in the world.”

Let me ask you something.

What on earth makes you think that we don’t know that our ability to cope in the world is at issue here?

Literally everything and everyone tells us, without ceasing, that our disabilities are going to affect our ability to be successful, and that we’re just making things harder for ourselves by being different, and that “you have to be able to cope with the world!”

We didn’t just not think of that.

We didn’t just not notice.

We get told every day how much our inability to cope with the world is a problem.

We get told every day how much the things we can’t do are a problem.

We get told every day how we’ll “never be able to make it in the real world if you can’t [whatever arbitrary thing is the issue today].” That “the world isn’t going to change for you.”

We know.

We notice that everything is harder for us.

We notice that we can’t do things that other people take for granted.

We notice that you look down on us for this.

We notice that we have far fewer chances to succeed, and that we have our choices and autonomy constrained because of other people’s estimation of our ability to cope with the world.

We notice when people decide that it’s their place to make things as hard and unfair for us as they think they should be, and the excuse is always that it’s about our ability to cope with the world.

We are the ones who bear all the consequences of what it becomes okay to do to us in the name of our “ability to cope with the world.”  Like deciding that you’re justified in whatever it takes to make us successful in the world in the ways you think we should be …and if that means making us as normal as you can figure out how to, then so be it.

People treat us this way all the time, and we notice.

We get it. We get it like you cannot even fathom.

February 20, 2017

Through the trees

Posted in My neighborhood, Uncategorized tagged , , at 12:54 pm by chavisory

fullsizerender

February 16, 2017

Sometimes it’s not me. It’s you.

Posted in Uncategorized tagged , at 1:32 pm by chavisory

I have a new post up at We Are Like Your Child today:  http://wearelikeyourchild.blogspot.com/2017/02/sometimes-its-not-me-its-you.html

(Spoiler alert:  I had a bad day.)

January 26, 2017

Distraction

Posted in Uncategorized tagged , , , at 2:16 am by chavisory

In the aftermath of Mike Pence’s attendance of Hamilton at which the cast delivered a harsh but courteous address to him personally, Trump unleashed a series of tweets bemoaning that the theater should be a “safe and special place” that attracted a storm of media and social networking attention.

The same week, Trump settled the fraud case against Trump University for $25 million.

“It’s just a distraction!” people yelled about the Hamilton debacle.

And though it may have been intended that way, the then president-elect’s tweets actually conveyed an entirely real message about how he views the proper role of the performing arts, free speech, and dissent in American society, and it was not benign or trivial at all.

On the day that we celebrated the collapse of Republican efforts to undermine the Office of Congressional Ethics, Merrick Garland’s chances of being confirmed to the Supreme Court were rapidly running out, and, lacking any evidence whatsoever that those events were connected or that the attempt to hobble the OCE was anything but a rushed, arrogant, disorganized power play, I saw another Facebook denizen declare:

“I knew it!  This was just planned to distract us.”

(Never mind that Merrick Garland’s nomination had languished for most of a year; it was not news.  It was not unexpected at all that it was going to expire without action from Congress.)

A few Republican legislators dared to rebuke Trump for his tweets mocking John Lewis; I note this is an interesting piece of information regarding who in the GOP might be more willing to openly oppose him on other matters.  I’m told “pay attention if you want, but know that it’s just a distraction.”

 

I’m just gonna throw this out there:

There are a lot of bad things happening all at once right now. Some of them are really big deals and some of them are less so. That doesn’t necessarily make any one of them a “distraction” from any of the others.

We’re also going to have things go right, and just because something goes right in the midst of other things going wrong, doesn’t make it a distraction.

We might not be able to control very much right now, but that doesn’t mean we can’t meaningfully influence outcomes, and when we manage to do that, even if our victory was relatively minor in scale, does not make it a distraction. It makes it a lesson in what we did right and how much further we should reach.

Seizing on the issues that we can influence strongly and immediately does not mean that we were “distracted” from something that meant more. Sometimes that may be true, but it’s not just automatically true that if we saw a chance and took it, that we were “distracted.”

There’s no shortage of things that need doing right now.  There’s no shortage of things that need attention.  Very few of them are inconsequential. Sometimes we’re going to benefit from unity of purpose and sometimes from diversity. I’m not saying not to be conscious of how we’re using energy, but just because something isn’t everything, doesn’t make it nothing.

That bad things will keep happening doesn’t make good ones not count.

 

One of the ironies is just how distracted they really are.

Trump is not on the same page with his Secretary of Defense about the value and legacy of NATO.

Trump is not on the same page with his Republican congress about the actual content of the ACA’s supposed eventual replacement.

The Republican congress was not on the same page with Trump or their constituents about the OCE.

Trump has to have his television time restricted like an impulsive child.

Trump is distracted by the hijinks of National Parks Service employees on Twitter.

Trump is distracted by dissent over the size of his fandom.

Trump is upset that protests and marches have disturbed his ability to “enjoy” the White House in the way he feels he should be able to.

We are not distracted.  There are 63 million of us and one of him.  Our resulting ability to pay attention to more than one bad thing at a time is not distraction.

Let’s not give undue time or energy to Twitter drama, but the fact that there are people paying attention to the content and implications of what he says directly to the American public on a media platform used by millions, is not distraction.

There was a time not that long ago at all when I thought that he was frighteningly good at derailment and distraction, but I’m not so sure of that anymore.

He is distracted.

I say keep him that way.

 

January 10, 2017

Lost in the discussion of “lost diagnosis”

Posted in Uncategorized tagged , , at 5:34 pm by chavisory

“The past is never dead. It’s not even past,” wrote William Faulkner, and I couldn’t help being reminded of that line as I read the recent article “Compulsions, anxiety replace autism in some children,” from Spectrum magazine.

An estimated 9 percent of children with autism achieve a so-called ‘optimal outcome.’ But nearly all of these children years later develop related conditions such as obsessive-compulsive disorder, attention deficit hyperactivity disorder, anxiety and depression, the new study suggests.

“The majority of the group with a past history of autism are vulnerable to developing other psychiatric disorders,” says lead investigator Nahit Motavalli Mukaddes, professor of child and adolescent psychiatry at the Istanbul Institute of Child Psychiatry in Turkey.

So let’s get something straight right off the bat.

There is—so far as has ever been revealed—no such thing as a “past history of autism.”

If children who lose a diagnosis are socially compensating to such an extent that screening tests can no longer detect their autism, that probably reveals more about the weaknesses of a definition of autism based entirely in deficits rather than in core processing differences.

Autistic children don’t grow up into non-autistic adults. These children are likely suffering the utterly predictable effects of being forced to hide their autism or having their natural modes of functioning fractured. They’ve had their labels replaced, not their autism.

You can’t make an assertion like “Our results indicate that the improved status with regard to autism symptomatology is maintained over time” when you aren’t talking about a significant amount of time.  People compensate differently at different times of life, autistic people can experience markedly atypical developmental trajectories, and autistic adults often suffer burnout in middle age or later from decades of the strain of pretending not to be autistic.

(The study participants had “lost” their autism diagnosis at least two years before the study commenced.  That means some of them were as young as four years old when they lost their diagnosis.  For girls especially, who are increasingly having it recognized by professionals that the true extent of their social communication challenges may not be apparent until adolescence, it should go without saying that this is…insufficient.)

An autism diagnosis isn’t just “lost” by a child by happenstance, like a disregarded toy or a mismatched sock; someone has to take it away. And non-autistic parents and professionals have a long history of mistaking the label for a thing with the thing itself (as does the title of this article, conflating loss of diagnosis with loss of autism) when it comes to states of being they don’t understand well. But no loss of underlying condition, when it comes to a condition that most people with it experience as a basic neurological configuration, should be considered conclusive until follow-up at 20-30 years later, at minimum—given the now-common phenomenon of autistic people first recognized and finally able to acknowledge their lifetime of effort at “pretending to be normal” in their 40’s, 50’s, or later—finds someone no longer exhibiting the core processing differences of autism. Not just compensating for, concealing, or having learned to override by brute force the core differences in information, language, and sensory processing widely reported by autistic people as central to their experience.

“You’re never more disabled,” autistic author Rachel Cohen-Rottenberg once wrote, “than when you’re over-compensating.” And the presupposition at play in this research design that, if symptoms are failing to appear on screening tests, it’s because the autism has disappeared, not that an autistic person has either learned a specific skill set or is exerting a continual effort to perform according to expectations, is one of the most basic manifestations of neurobigotry.

It must be that we are no longer autistic, because autistic people aren’t capable of learning or trying.

And it certainly can’t be that those efforts at fakery and concealment have meaningful costs to our well-being, because autistic people are not presumed to have well-being worth preserving.

 

Also notably, the oldest of the test subjects here were 16—still minors, still most likely living under the control of their parents. The same parents with a substantial investment in believing that their children’s autism has been successfully suppressed.

Those aren’t fair circumstances under which to expect a teenager (let alone a 6-year-old), who may have been substantially deprived of bodily and cognitive autonomy (and in all likelihood, access to competing information about neurodiversity and the narratives of other autistic people) to give an accurate self-report about whether their experiences of themselves in the world are still, in fact, autistic.

Think about what revealing that would expose a kid to, in terms of parental disappointment and potential for resumed scrutiny, mistreatment, or return to invasive and demeaning therapy.

 

There’s something incredibly ironic and cruel about considering an “optimal outcome” for autistic children a future in which we suffer from anxiety, depression, and a host of other psychiatric illnesses “instead” of being allowed to grow up to be healthy, happy autistic people.

I can only hope that this research helps in alerting clinicians, researchers, and parents to the central fault in “loss of diagnosis” as a desirable goal in the first place, but I’m not made optimistic by the conclusion of the lead researcher here: “Even when we stop their special education programs, we need to continue their psychiatric and mental health follow up for a long time.”

No, you need to stop trying to turn autistic kids non-autistic.  It doesn’t work for gay kids.  It doesn’t work for trans kids.  It doesn’t work for autistic kids.

It doesn’t work.

December 31, 2016

Sunset

Posted in Uncategorized tagged , at 4:06 pm by chavisory

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Goodnight, 2016.

December 26, 2016

Tidings of comfort and joy

Posted in Uncategorized tagged , , , at 6:23 pm by chavisory

I hope everyone is having holidays as peaceful and restoring as possible.

When I don’t know what to do or where to start, I make lists.

I was moved to start a list a few days after election day, when everything felt very fearful and uncertain…when it seemed like nothing was impossible in the worst possible way.

As I started reading a lot about how to oppose a political regime the likes of which we’ve never really experienced before, and also Rebecca Solnit’s Hope in the Dark, about the necessity of hope and joy in activism, I felt like we needed a way not only to voice our opposition, but to account for what we are tangibly accomplishing in response.

Not to maintain that everything is really okay, not to worry, that it’s not as bad as it seems, or just to make ourselves feel better (although it has made me feel better).  But to concretely track our successes at holding injustice and authoritarianism at bay, to remember not only that progressive and human rights victories can, do, and are still happening, but how they happen.  Even now.

ETA:  At least twelve pretty good things have happened in the world since election day.  In particular, there have been important developments for the rights of trans and intersex people and disabled workers.

(A lesson that’s already really jumping out at me just from the list so far is that your city councils are important.)

The introductory post to Reckoning of Joy is here.  I’ve also been including some resources and guides for taking action, inspiration, and musical encouragement.

Let’s get to work in the new year?

November 21, 2016

Snow and comfort

Posted in Uncategorized tagged , , , at 12:39 am by chavisory

I’ve been wanting comfort food, well, all week, to be perfectly honest.  And then I stepped off the subway tonight into the first snowfall of the year.

Climate change doesn’t quite have us yet, I told myself.

I have one pork chop, and I just dredge it in flour, salt, and pepper like I usually do, along with the whole rest of a bottle of oregano I’ve been trying to use up, and pan fry it in a little butter and a dash of olive oil.  (The mother of one of my college roommates was the person who I first saw use butter and olive oil together for really good pan frying.)

With the pork chop done, I deglazed the pan with a dash of (really cheap) white wine, and when it mostly quit bubbling, just poured the result over the pork chop.  (There’s probably a cooking term for what I did wrong there, but I don’t know what it is.)  I added some more butter to the pan (I don’t know how much, sorry.  Some more), and cooked about half a sliced plain yellow onion and half a thinly sliced pear in the butter and browned bits, with some crushed dried rosemary, and about two dashes of cinnamon, until it was all soft and slightly caramelized.

And ate the whole mess with a glass of the cheap wine and some Doctor Who, whose writing quality has really recovered well in season 9.

(I forgot to take a picture of the food like a proper blogger or a Millennial, but it tasted prettier than it looked.)

“The Zygon Inversion” feels particularly important this week.

10/10 stars, would recommend.

November 10, 2016

I can’t fix this for you and I can’t tell you what you want to hear.

Posted in Uncategorized at 6:01 pm by chavisory

This is to anyone who has ever, ever said to me “You could rule the world if you really wanted to!” who voted for or in any way enabled what happened this week.

I am pretty sure that this statement has never meant anything but a combination of “I have no actual clue either how the political world works, or who you really are,” and “I just want you to fix everything for me without me having to take seriously a single thing you say.”

And I am tired of your excuses and I am tired of you not taking responsibility for your world, and no, I cannot help you now.

Likewise, I never want to be told, ever again, “But you’re the smartest person I know!” or “You’re the most articulate person I know!” by anyone who is not prepared to listen to anything I have to say in the slightest regard.

You already know what I think.  I’ve been saying it on loop since I was a child.  Justice matters.  Bigotry is wrong.  It did not make a difference.

Now you have to make it right, because I tried.

I also can’t protect you from the emotional consequences of your choices.  There’s something I’ve realized I do a lot, which is reassuring people that everything’s really all okay after they’ve screwed up and wasted my time or caused me a lot of hurt or extra work.  And I can’t do that right now.

I can’t pretend not to be upset right now.  I’m not going to pretend to you that it’s all okay.  It’s not okay.  It’s really bad, and I can’t tell you it’s not.

Now you’re baffled at the vitriol and the anger you’re seeing in your social media?  Now you’re sad at the divisiveness?

You chose this.  When you voted for a candidate relying on a rhetoric of violence against women, of open persecution of religious minorities, of expanding blatantly racist policing practices, of undoing hard-won civil rights protections for queer people, you chose this.  We told you exactly what it was going to mean to the marginalized people in your life whose welfare you claim to care about if you voted for this man, and in full knowledge, you still did it.  So you chose this.

You do not now get to expect us not to be upset.  Your choices have had consequences.  You don’t get to expect that I will hide those consequences from you.  If you helped this happen, I have no comfort to give you.  It is all going to people who are going to need it more.

This isn’t me giving up; this is me deciding to put my effort where I actually think it can do any material good.  I’d already given some thought to it even before election day.  First, I have a book to finish editing.  It’ll be out this month.  Then what I am going to do is figure out how I can best financially, concretely support the people who I know are about to be failed really hard by social safety nets and by the communities who apparently can’t quite decide whether some of us are fully human or full citizens or what, in surviving this.

This isn’t to make you worry about me.  I always get through.

But you broke this, and now you get to fix it.  I have other shit to do.

November 1, 2016

What Every Autistic Girl Wishes Her Parents Knew

Posted in Uncategorized tagged , , , , , at 11:55 pm by chavisory

It’s Autistics Speaking Day, and I didn’t write anything, not only because my writing-on-command abilities have not been working quite the way I wish they were, but also because I have been proofreading and formatting the first anthology from the Autism Women’s Network, What Every Autistic Girl Wishes Her Parents Knew, which will be out this month (if it kills me. ; )

There are so many lines in this book that it’s been killing me for months not to be able to share or quote publicly yet.  Every single author has something important, wise, and necessary to say, and I couldn’t be more thankful to all of them.

Visit the book website to see our teaser video and sign up to be notified on release day!

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[Image reads “What Every Autistic Girl Wishes Her Parents Knew” and depicts three girls drawn in cartoon style:  One has blonde hair and blue eyes, wears a gray shirt and a bow tie and is using a cane.  One has brown skin, black hair, and green eyes, wears a blue shirt, and is sitting in a wheelchair.  One has olive skin, brown hair, and brown eyes, wears a pink dress, and waves at the audience.]

Art by Haley Moss, editing/design by Erin Human.

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