April 1, 2020

Our nation turns its lonely eyes to you

Posted in City life, Uncategorized tagged , at 10:58 pm by chavisory

IMG_0896

March 28, 2020

We need real money badly.

Posted in Uncategorized at 8:10 pm by chavisory

Hi everybody–I know this is a hard time for a lot of people, especially those of us who have suddenly lost work. But Mel and Laura, whose work and advocacy has been absolutely integral to the autistic and disability rights communities for decades, urgently need help right now, and if there’s anything you can send their way, it would mean the world to me.

Cussin' and Discussin'

I am going to run out of crucial meds. This is me shamelessly begging for money. You can paypal it to webmuskie@gmail.com. It needs to be real money, not a gift card, because we have to use it at the pharmacy. If the pharmacy is open. And it needs to be a whole lot of money because meds are expensive and we are running out of ones that will keep me alive. Also we really need respite. Laura says a few more days of this could kill her, having to take care of me. I keep trying to take a load off her but somehow making more work for her. This isn’t sustainable and we are trying to survive. So I have no shame in begging, something is massively messed up with my benefits I have no access to them. Please help please someone help ideally lots of people help…

View original post 89 more words

March 26, 2020

On the surreal experience of reading an out-of-date Smithsonian magazine in November of 2019

Posted in Uncategorized tagged , , , at 4:47 pm by chavisory

Every year for Christmas, for years and years, my grandmother gave me a subscription to Smithsonian Magazine rather than a more conventional present, and being a nerd with very little storage space, I appreciated this.

Being a nerd who also doesn’t have a lot of spare time, this gift also accumulated into quite the backlog of unread issues.

The last several months I’ve been attempting to commit to taking more mental downtime for myself, and also working on getting through my stack of unread Smithsonians, and so often while I’m cooking or waiting for water to boil, I’ll just choose one at random.

And that is how I came to be reading one night, standing in my kitchen, about NASA’s Journey to Mars project, whose first test flight would launch an unmanned capsule called the Orion beyond the moon and back, in the year 2018.

And for a second, it felt very seriously as if I had fallen through a wormhole or slipped into some kind of alternate timeline, or fallen asleep for too long and woken up in an unfamiliar future.

Because I remembered nothing, no media coverage or publicity whatsoever, about a test flight of an impending mission to Mars having been flown in the year 2018.

I checked the date on the cover: May of 2016.

So as late as the spring of 2016, we were roughly on track to be executing an eventually manned mission to Mars, in the foreseeable future.

It felt kind of like reading a sci-fi novel written decades ago, about all the stuff that was supposed to have been invented or accomplished by the year in which you’re currently reading the novel and laughing because that’s not what happened, only more unnerving and much less funny.

I wondered if it had still happened. Or whether NASA had had its budgets for things like this slashed, positions eliminated, development of the necessary science set back by decades?

Surely, if it had happened, it would have been bigger news? We’d all be talking about this, right?

Then again, maybe not. Given the situation.

Or maybe it was delayed not by budget cuts or political meddling, but just by normal engineering problems, and in the face of everything else, that was just never going to make the news and the whole thing slipped quietly out of collective consciousness, waiting for a better time.

The last couple of years virtually everyone I know has been walking around with this sense that time is broken. Too much is happening too fast to keep up with. We’re dealing with assimilating a volume of information basically unprecedented in human history, ecological events of inhuman proportion occurring on human timescales. We don’t know what day it is. We don’t know what happened this morning as opposed to last week. It feels like time is fractured, like something has gone very badly wrong on a fundamental level, but we could never prove it, only keep telling each other, “No, it didn’t used to be like this.”

Holding that magazine felt like holding hard evidence. Like having found a newspaper clipping from in alternate future.

Like a light left on, shining under the door back to the right one.

I wonder if that future is still there somehow.

If we could still get back.

*

(I did actually look up what’s going on right now with the Journey to Mars project, and while it’s not quite on schedule as laid out in the 2016 article, it is still progressing! In the summer of 2019, a second successful test of the Orion capsule’s Launch Abort system was completed, with the next milestone being to return astronauts to the moon!

“In effect, NASA successfully demonstrated that the Orion spacecraft’s LAS can outrun a rocket and pull its astronaut crew to safety in case something goes wrong during launch. As Kirasich indicated, the test is another milestone in the agency’s preparation for returning to the Moon and making the ‘Journey to Mars.'”)

March 17, 2020

Little altar

Posted in City life tagged , , at 10:54 pm by chavisory

IMG_0877In order to maintain some kind of routine and sense of time while we’re all isolated and out of work, and also get outside at least a little bit as safely as possible, I’m trying to go for a walk in the park both early in the morning and late in the evening every day. I failed this morning and slept late. But last night I went out and found this whimsical shrine to I don’t know who or what.

March 6, 2020

Posted in Uncategorized tagged , , , , , at 1:16 pm by chavisory

There’s been a dynamic this primary season, and this is adapted from a Facebook post that I made yesterday minutes before Elizabeth Warren had officially announced the end of her campaign, but it’s something I feel the need to say something about.

And I don’t have numbers or statistics to throw out here, this is my personal, anecdotal experience; however, it has been …rather notable to me.

Throughout this long primary campaign, and especially in the last couple of days, I have heard, repeatedly, from various people and from only slightly different groups of people, that Elizabeth Warren supporters needed to drop our vote for her and support Bernie if we wanted a real progressive candidate, or to drop our vote for her and vote Biden if we really wanted to win in the general election, but either way, to “stop splitting the vote.”

I have never, not once, not one single time, heard a Warren supporter or campaign volunteer arguing that supporters of any other candidate had any kind of an obligation to drop support for their candidate and get behind ours instead for whatever reason we said.

And that’s not why I decided to support her in the first place, but God, did I appreciate it.

I think that there is something that people making these arguments about our obligation to fall in line for a candidate do not maybe understand, which is just how much girls like me hear stuff like this, and just how tired we are of it.

Like, however many times growing up you think I got told that my duty was to just go along with what somebody else wanted of me, that I needed to stop being inconvenient and make things easier on other people, that I just needed to understand that other people didn’t think like me, that I needed to be “realistic” and not fight for what I really wanted… multiply it by about ten.

No, really. However often you think it was, it was more.

(And, incidentally, if you were or are a person doing this? You have never been the only one. Other people were, and are, doing it, too. I was getting this everywhere. If you thought you were the first person ever to tell a stubborn little girl some hard “truths” about how the world worked, that it would never change for people like me? Guess what. You weren’t. You’re not. You’re just one more. In all likelihood, you are not some brave truth-teller in that girl’s life. You’re just a bully.

I want you to know that.)

I am completely immune to it, in terms of my decision-making. I have been hearing it for so long, you don’t even understand.

But it hasn’t stopped making me so. angry. And it will not make me view your candidate in a more favorable light.

Elizabeth Warren suspended her campaign this week. I am sad. I am disappointed. But I was never not ready for this news, I was never not thinking about how I would vote and who I’d support if she didn’t win the nomination. “Loving Elizabeth Warren means planning for America to break your heart,” as Monica Hesse put it in the Washington Post. Because, again, there is almost nothing I’m more used to than the fact that what is obvious to me is not what’s obvious to most people. That’s the water I’ve been breathing since the day I was born.

There is nothing I need to be told again less than “You have to understand that most people aren’t like you, Emily.”

I know. Trust me, I know.

And I can handle that, I can handle losing honestly, if that’s what happened. If it was just that too many people disagreed with me about who the strongest and most prepared candidate was, and not that they fell victim to some sneering, defeatist, self-fulfilling prophecy about how she could never win anyway, so why bother trying?

If that’s what it was, I’m not sure I can handle it.

Bernie Sanders is most likely my second choice. I never even took my Birdie sticker off of my laptop after the 2016 primaries, because I was not embarrassed of having supported Bernie or the reasons why I did. I am not going to have be sold very hard on voting for him again. But I am going to do so on the strength of his long Senate service, of his being right about the Iraq war when a lot of other basically decent people were wrong, on the trust that constituents from his home state testify to having in his integrity, and what I hear is a really, really good disability policy.

It will not be because of anyone who told me I needed to give up and fall in line because they said so.

February 18, 2020

Falling backwards (A tiny late valentine to Pluto)

Posted in Uncategorized tagged , , , at 6:20 pm by chavisory

I learned from a Twitter friend this morning that today is the 90th anniversary of the discovery of Pluto by researcher Clyde Tombaugh! (I meant to make this post for Valentine’s Day, but this is better.) Only recently did I learn that the now-famous heart-shaped region of Pluto, the Tombaugh Regio, is named for him, because somewhat coincidentally, I’ve become obsessed with this song this week:

But the even neater coincidence is this song, whose lyrics conclude

“The heaviness that I hold in my heart belongs to gravity.
The heaviness that I hold in my heart’s been crushing me”

…was released in November of 2013.

The photographs revealing the heart of Pluto, the Tombaugh Regio, were not released until July of 2015.

(Some notes from the artist on the song and album are here.)

February 12, 2020

Grief in the face of prosperity

Posted in Uncategorized tagged , , , , , at 12:32 am by chavisory

The first thing I thought of when I finished reading Alyssa Ahlgren’s essay after it came across my Facebook news feed was this article from the New Yorker this past fall, about the experience of publicly mourning the death of a glacier, about how to collectively  acknowledge grief for losses on a scale that we as humans are just not psychologically prepared to cope with at all, and our own responsibility in the face of them.

And I know that ecological concerns were not really the main thrust of Ms. Ahlgren’s observations, but still, it’s the first thing, somehow, that I thought of, that I wished she would read. It was the first thing I read that articulated heartbreakingly concisely something I’ve been struggling with how to acknowledge.

“This is one of the most distressing things about being alive today: we are witnessing geologic time collapse on a human scale.”

It’s February and I haven’t had to wear a coat more than five or six times total this year. Our blue herons haven’t bothered to leave for the winter. There are daffodils coming up in the park this morning. That would be normal for February if this were Georgia.

But I’m in New York.

I’m not being brainwashed into this. I’m seeing this with my own eyes.

And I’m a little over a decade older than Ms. Ahlgren, so admittedly my frame of reference is somewhat different. I’ve seen things change more. I also know that we didn’t used to have fireflies into mid-September. Perhaps things look fine from her perspective because in her adult memory, this is more or less the way they’ve always been.

But they haven’t.

*

Ms. Ahlgren’s reliance on the apparent ready availability of consumer electronics to prove that we’re all simply ungrateful, that we’ve been tricked or brainwashed into thinking we’ve never seen prosperity is…interesting.

I’m not sure if she knows this, but my generation is actually the first in decades to be projected to have a shorter life expectancy than that of our parents.

Many of us, even if we have professional careers, will never be able to own a home.

I live in an apartment without a dishwasher or washer/dryer or microwave or television. (I haven’t actually owned a television in so long that whenever I encounter one I barely know how to operate it.)

That’s actually okay with me. I don’t really need those things, and I’m used to getting along without them. (I’m also an old Millennial, or a “Xennial,” or a member of the Oregon Trail generation; I do know what it’s like to live without the internet or smart phones.) But it is very much a mistake to assume that standards of living and access to technology are equally high for everyone in this country. Or even that they’re uniformly better here than elsewhere in the world—they’re not. There are still parts of this country where indoor plumbing and access to safe drinking water can’t be taken for granted.

Access to gadgets isn’t quality of life. It isn’t safe and stable housing. It isn’t job security. It isn’t reliable access to healthcare.

It’s not that we’re ungrateful. But we’re anxious and afraid, for our own futures and our world.

We don’t know right this minute if our votes matter anymore, whether if our sitting president invites foreign interference into our elections again, that there is anything that anyone will do about it.

We keep seeing our country refuse to honor the ideals or even the Constitutional protections were taught to believe it stood for. It’s starting to look a whole lot like our laws don’t matter, that rules are considered to apply to Democrats and not Republicans, that members of one faction of our political class can do literally anything it wants, to anyone, no matter how explicitly illegal, without consequences.

We see how our fellow humans are being treated at our borders, our fellow citizens poisoned by their drinking water, and we don’t feel we have the right to say “It doesn’t affect me, it doesn’t matter to my life.”

I was on jury duty this past week, and the sheer number of people I saw being excused, after having to explain to a judge, that we simply could not afford to serve on a trial of significant length because that’s not how the way in which we’re employed works, was a little astonishing, even to me. That’s a problem of justice for defendants who literally cannot have a jury of their peers, because such large swaths of our society cannot afford to participate in the justice system.

I’m 37 years old and it still feels strange and wrong every time I buy a book or a movie ticket, because I couldn’t do that for so long.

*

I’m sitting here in a sunny coffee shop, too, and I am grateful.

I’m grateful to have control over my own life to the degree that I do. I’m grateful to be employed in a career I enjoy, even if it will never give me a luxurious standard of living, because around 85% of people with my disability are unemployed or under-employed (or employed under schemes in which employers don’t even have to pay us minimum wage).

I’m grateful for my union, because of which I have workplace protections and health insurance and a pension plan which I’m relatively confident will survive even if Social Security doesn’t. And I don’t normally buy into Social Security alarmism because I know that it is actually one of our more stable and traditionally politically untouchable government programs, that it’s survived many threats from deficit scapegoating more or less unscathed over the years, but this administration seems unusually hell-bent on setting fire to the stability of our social safety net from the bottom up.

I’m grateful for the work of everyone who’s helped secure those basic worker protections for people in my profession.

I’m grateful to have gotten a high-quality college education without going into student debt, because a lot of my generation did not, and no, not just because they made bad or lazy choices, but because even state college tuitions have risen completely out of proportion to wages in the past two decades. It used to be possible for an average student to pay their way through state college with a summer job. It’s simply not now. And I support the policies of people like Representative Ocasio-Cortez and Senator Elizabeth Warren regarding student debt forgiveness because even though my family had the good fortune in many ways to be able to do what many regard to have been the right thing and just didn’t incur any, there are now so many people my age so burdened by debt that they can’t take part in economic life in any normal way and it’s affecting the health of the economy for everyone, including me.

When I walk through my neighborhood, and see the number of shuttered, empty storefronts—of bars, restaurants, stationery stores—where small businesses (and sometimes even corporate chains) couldn’t keep up with astronomical rents… I am not being brainwashed into seeing that.

We aren’t making this up.

I run another, very small blog, where with the help of other readers, I tally up every progressive, environmental, or civil rights victory, big or small, that we have secured in this time despite the depredations of our current administration, and I am grateful for every single one of those events and for everyone whose work and commitment made them happen.

I am grateful. I like my iPhone and my laptop and our easy access to information and media and living in a lively, diverse city with incredible access to music and theater and cultural resources.

And in a lot of ways, living here long term is not good for me. My health and well-being would be better served, honestly, by living in a quieter, smaller place. But I fear the economic and personal consequences of trying to move somewhere and start over, of giving up the theater community and faith community and network of known and trusted employers I have here, of winding up lonelier and poorer and more isolated. I just feel like I’m being pulled apart at the seams sometimes. But there’s nothing really to do except to just keep working until there’s a more viable obvious choice.

I don’t think we’ve been brainwashed into thinking we’ve never seen prosperity, rather than that we have seen prosperity, but many of us have not gained access to its benefits in terms of true freedom of movement or security about the future, for ourselves or for the world we’re leaving our children.

I’ll survive, because it’s just what I do, but more and more I don’t know what kind of a world I’ll survive to live in, and I know I’m far from unique in that, and that the consequences I’ll face, given where I live, are nowhere near as severe as those that people elsewhere in the world will, but it’s still sad and it’s hard, and if Ms. Ahlgren can’t appreciate that..?

After the 2016 elections, those of us who were scared and upset got told a lot that we lived in a cultural “bubble” and had no understanding of the anxieties and fears that would lead so many of our fellow citizens to vote the way they did—

And now to be told, in response to our genuine fears and our responses to them at the ballot box, “You just don’t understand how good you really have it…”

Well, which is it? And also, how dare you?

You can reasonably conclude that I am wrong in my assessment of the facts. As I was saying to a friend not long ago, both the beauty and the horror of the human mind is its ability to assemble narrative out of data in a basically infinite number of ways. It’s a fallacy to think that someone who has access to all the same information as we do will necessarily agree with us about what it means, that if only people knew what we knew, they’d agree about its significance or what to do about it.

(Although I do have to wonder whether Ms. Ahlgren knows that within the lifetimes of some of her peers, America has virtually always been at war. No, this isn’t World War II or Vietnam, but that does not mean that we aren’t witnessing historically consequential events or that we don’t get to respond or have feelings about them.

“The oldest Icelandic texts are a thousand years old,” Magnason said—around the same age as the ice in the country’s oldest glaciers. “In all that time, the Earth has been quite stable, but the Earth will have changed more in the next two hundred years than in the last thousand years.”)

 

But if you cannot look around at what is happening in this country right now, at what is being done to our environment, if you can turn on the news and not at least understand why someone of your generation might be legitimately angry at our government and scared for our future, might not simply be comfortable with what we have—

Then I am not the one who lives in a bubble.

*

There’s a line in the song “Bright Horses,” on Nick Cave’s new album, that goes “We’re all so sick and tired of seeing things as they are.” Trust me, most of us wish we weren’t witnessing our democracy and our rule of law, along with our natural world, crumbling under our feet. Almost everyone I know is exhausted from heartache, but we can’t pretend not to be seeing what we are in fact seeing, what we are experiencing. And you can disagree with our electoral responses to it, but please do not tell us we’re imagining it; we are not.

No, I can’t look around me and see what I see, and in good conscience decide to just sit here and be happy with my coffee and my iPhone.

I can’t. I won’t.

January 28, 2020

Donation request–Autistic People of Color’s Fund

Posted in Uncategorized tagged , , at 2:20 pm by chavisory

Hi all! As you may or may not know, I’m also a social media volunteer for the Autistic Women & Nonbinary Network (AWN Network). One of the community resources we make available is the Fund for Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment (or the Autistic People of Color’s Fund for short). The fund exists to provide direct, individual financial aid to autistic people of color for a variety of needs, due to the disproportionate barriers accessing services and community support often faced by autistic people of color.

In the past week or so, we have received a record number of applications for assistance.

I and many other autistic people have written often about how the financial priorities of the biggest and most visible autism organizations fail to support our actual well-being. If you’re able and would like to contribute in a way that will support the quality of life of autistic people materially and very, very immediately, the link for more information and how to donate is here.

January 15, 2020

Institutionalization and Daryl Hannah and autistic people like me

Posted in Marginalization, Uncategorized tagged , , , , at 6:20 pm by chavisory

[This post is slightly expanded from a recent Facebook comment]

A friend posted this article about Daryl Hannah this week, which is a few years old, and which I enjoyed very much despite the totally melodramatic and unnecessarily stigmatizing headline (which she probably had no role in choosing).

And though the fact of Hannah’s autism, and the fact that autistic people can and do succeed at counter-intuitive, high-visibility careers like acting, is old news by now (and Sense8 has sadly reached the end of its run), I think it’s especially worth drawing attention to one aspect of the article, because it bears on an issue that is still very much under discussion in the autism community.

In particular, the childhood history Hannah relates really highlights how the gulf between autistic people whose parents and professionals say need to be in institutions because of the severity of their autism, and those of us who they say are “mildly affected” and just can’t understand, is just not what they assume it is.

Daryl Hannah is someone who could well have been institutionalized, had her parents believed the doctors who recommended it. And then anything that happened to her there, any deterioration of her condition, any given set of skills or knowledge she failed to acquire as a result of institutionalization, would have been used as evidence that she belonged there and not as evidence of injury by institutionalization. She’s probably right that she’d still be there today.

And today, she’d be being held up as an example of someone whose condition was so severe, whose daily living skills and ability to exercise autonomy was so lacking, that it was clearly understandable to institutionalize her, rather than someone who’s so outrageously successful her autism obviously can’t be that serious. Or that even if she is, she shouldn’t talk about it or use that label for herself because it takes attention away from autistic people with more intensive support needs.

When really the only difference is in the kind of chances she was given.

I know I’ve quoted my high school math teacher before, who said “A lot of times kids will ask me, ‘When am I going to use this?’ And the answer is, ‘Probably never.’ But if you don’t learn it, you definitely won’t.”

Someone never genuinely given a chance to live and grow in their own community, never will.

Daryl Hannah narrowly avoided institutionalization. And for all that some factions of parents and autism professionals will say that this isn’t really about autistic people like me or Daryl Hannah, for as different as they say I am from autistic people who they insist really do need to live in institutions, frankly, if it could’ve happened to Daryl Hannah, it could’ve happened to me.

I don’t think somebody else’s kid really does belong in an institution because their support needs really are greater than Daryl Hannah’s, or mine. I think they deserve to live in their communities as much as she or I do.

I think the rest of us would be as fortunate to have a chance to know them and have them in our lives as much as we are for the pleasure of having Daryl Hannah’s art in the world instead of having her locked in an institution while we’re told why she really belongs there.

January 5, 2020

Conscientious objector resources & alternatives to military service

Posted in Uncategorized tagged , , , at 3:09 pm by chavisory

I did not hope for this to be my first post of the new year, but as the situation in Iran and Iraq has quickly become more volatile and concerning, this is courtesy of a friend of mine who wanted to put this information out there without being credited by name.

If you are currently in the military and concerned about deployment or considering claiming conscientious objector status (which I did not know, but apparently you can pursue even after you have enlisted), or you are not currently enlisted and seeking alternatives to military service, below is some information that might help.

With hope for a more peaceful new decade for us all…

***

“If someone you know is in the military and wants to make sure they’re not hauled off to kill or die to boost Trump’s approval ratings, here’s some basic info and a hotline # for pursuing a conscientious objector discharge:
https://girightshotline.org/…/conscientious-objection-disch…

“If you know someone who hasn’t enlisted yet but is considering it as a way to get healthcare, free college, job training, etc, the Quakers have help finding other ways to get those needs met. We need Medicare for All and free college, but in the meantime, scroll down for free downloads and regional guides on what’s out there now: https://www.afsc.org/resource/alternatives-military

“And if it comes to it, while the maximum penalties on the books for going AWOL are brutal, but they haven’t been used since 1945. In practice the Pentagon only charges 5% of soldiers who quit, and only 1% receive any sentence. Compared to being asked to kill innocent people or get killed in pointless war, getting out is both the right and the smart thing to do. http://nymag.com/…/…/what-happens-to-most-awol-soldiers.html

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