Sometimes people hit a place in their life where things are going really well. They like their job and are able to be productive at it; they have energy after work to pursue the relationships and activities they enjoy; they’re taking good care of themselves and rarely get sick or have flareups of their chronic health problems; stuff is basically working out. Then a small thing about their routine changes and suddenly they’re barely keeping their head above water.
(This happens to me all the time; it’s approximately my dominant experience of working full-time.)
I think one thing that’s going on here is that there are a bunch of small parts of our daily routine which are doing really important work for our wellbeing. Our commute involves a ten-minute walk along the waterfront and the walking and fresh air are great for our wellbeing (or, alternately, our commute involves no walking and this makes it way more frictionless because walking sucks for us). Our water heater is really good and so we can take half-hour hot showers, which are a critical part of our decompression/recovery time. We sit with our back to the wall so we don’t have to worry about looking productive at work as long as the work all gets done. The store down the street is open really late so late runs for groceries are possible. Our roommate is a chef and so the kitchen is always clean and well-stocked.
It’s useful to think of these things as load-bearing. They’re not just nice – they’re part of your mental architecture, they’re part of what you’re using to thrive. And when they change, life can abruptly get much harder or sometimes just collapse on you entirely. And this is usually unexpected, because it’s hard to notice which parts of your environment and routine are load bearing. I often only notice in hindsight. “Oh,” I say to myself after months of fatigue, “having my own private space was load-bearing.” “Oh,” after a scary drop in weight, “being able to keep nutrition shakes next to my bed and drink them in bed was load-bearing.” “Oh,” after a sudden struggle to maintain my work productivity, “a quiet corner with my back to the wall was load-bearing.”
When you know what’s important to you, you can fight for it, or at least be equipped to notice right away if it goes and some of your ability to thrive goes with it. When you don’t, or when you’re thinking of all these things as ‘nice things about my life’ rather than ‘load-bearing bits of my flourishing as a person’, you’re not likely to notice the strain created when they vanish until you’re really, really hurting.
One of two newborn Himalayan bear cubs, which were named Yashin and Streltsov in honor of well-known Soviet football players and Olympic champions Lev Yashin and Eduard Streltsov, is seen inside an open-air cage at the Royev Ruchey Zoo in Krasnoyarsk, Russia April 26, 2018. Photo by Ilya Naymushin/Reuters
Women in short skirts prowling the streets at the command of pimps
leering hawkishly from the gloom. That’s the popular stereotype of the
prostitute. It’s 20 years out of date.
The
internet transformed the sex industry in every way, paving the road for
vast new enterprises such as video camming, pornographic clip sales,
and online roleplay. It also made the business much safer.
Many
sex workers were no longer obligated to patrol the streets, removing
the need for pimps as protection. Initial encounters could be conducted
through computers, allowing for the negotiation of rates and boundaries
before meeting in person. Potential customers could be vetted through
peers, letting women avoid johns with histories of violence or refusal
to pay.
For the first time in centuries, prostitutes took control of their industry, their safety, and their earnings.
By killing the sites sex workers used to advertise, Congress is pushing
them from the safety of their own homes back to the street. Most
practicing today have never known a time before the internet. Now
they’re fumbling to adapt to a resurrected dark age.
When I was younger I was very right-wing. I mean…very right-wing. I won’t go into detail, because I’m very deeply ashamed of it, but whatever you’re imagining, it’s probably at least that bad. I’ve taken out a lot of pain on others; I’ve acted in ignorance and waved hate like a flag; I’ve said and did things that hurt a lot of people.
There are artefacts of my past selves online – some of which I’ve locked down and keep around to remind me of my past sins, some of which I’ve scrubbed out, some of which are out of my grasp. If I were ever to become famous, people could find shit on me that would turn your stomach.
But that’s not me anymore. I’ve learned so much in the last ten years. I’ve become more open to seeing things through others’ eyes, and reforged my anger to turn on those who harm others rather than on those who simply want to exist. I’ve learned patience and compassion. I’ve learned how to recognise my privileges and listen to others’ perspectives. I’ve learned to stand up for others, how to hear, how to help, how to correct myself. And I learned some startling shit about myself along the way – with all due irony, some of the things I used to lash out at others for are intrinsic parts of myself.
You wouldn’t know what I am now from what I was then. You wouldn’t know what I was then from what I am now.
It distresses me deeply to think of someone dredging up my dark, awful past and treating me as though that furiously hateful person is still me. It distresses me to see others dredging up the past for anyone who has made efforts to become a better person, out of some sick obsession with proving they’re “problematic.”
Purity culture tells you that once someone says or does something, they can never go back on it. That’s a goddamn lie. While it’s true that some remain unrepentant and never change their ways and continue to harm others, it’s important to allow everyone the chance to learn from their mistakes. Saying something ignorant isn’t murder. Please stop treating it that way. Let people grow.
This!
A very long post of mine about exactly why I am CERTAIN HETEROROMANTIC PEOPLE ARE NOT QUEER!!!! pops up now and again in the little “more like this” for my blog.
this is embarrassing to me, as i no longer feel the way i did when i made that post, but yes, i did make it. several years ago.
this weird thing where people assume people don’t change their minds ever is… a weird thing
What I never get here, is what exactly do people expect? Because it seems to me that if they want people to be doing better, they have to allow for growth. But if they just want scapegoats and villains and people they can say are permanently and horribly bad, then they can do exactly what they’re doing. But they’re all going to run afoul of their own machine at some point. And many of them do. Because once they run out of other people to attack, they start going after their own. And it just becomes a war of purity, won by whoever is around the latest as far as I can tell.
It’s completely destructive. It serves no purpose other than people’s egos. It doesn’t lead to the world becoming any more of a better place. In fact it discourages people from changing. Because what is the point if once evil always evil?
But you know all it takes to be evil is to say the wrong words at some point. You don’t even have to hold opinions that are counter to their opinions. You just have to use words they don’t like, or that they can read something into. Including language that was perfectly fine and acceptable at the time that you actually wrote it. And including not using language that did not exist at the time that you wrote it. Because time and change are not things to them as far as I can tell.
But seriously like, what do they expect someone to do, who really sincerely wants to change in some way? Because right now it seems like that is not even considered possible. And yet they will attack people for not being whatever they want them to be, but even if you became exactly what they wanted you to be, it could never be good enough because you would never have started out like them. And as far as I can tell they all compete in a way, to at least act like they were born totally aware of everything they know now, and as if they actually have the answers. Which is very questionable among a group of people who don’t allow for change in people and seem to want everyone to think all the same as each other. Both of which tell me they don’t have many answers at all.
I know that there are autistic people who cannot, presently, communicate in a way that we know how to understand well.
I have never and will never say that autism isn’t a disability or that no one can be profoundly disabled by autism. Never. I do not know who you think I am, but I am not one of those people. A perusal of my blog on the topics of autism or disability would’ve told you that. I consider myself disabled by autism, and most of the autistic people I know do.
I know that there are completely non-speaking people. Many of them are able to use other methods of communication, like AAC devices, letter boards, ASL, or sounds and gestures. Some are not.
I know that there are autistic people who we have not found an effective way to communicate with yet.
The key word there is “yet.” When I say “we can do better for non-verbal autistic people,” what I mean is that I consider us generally–the advocacy world, the research world–to be morally bound to keep looking for communication methods that could help those people and keep trying to understand what their specific obstacles are and how to work with them.
“Some people just can’t communicate” doesn’t cut it. We have not even come close to a situation in which all non-speaking people have access to AAC if they need it (about half of non-speaking adults do not), and in which most researchers and clinicians take seriously the capacity of many non-speaking/non-verbal people to think and communicate if their specific challenges and needs can be understood and met, or autistic-reported issues that may impact communication ability like movement disorders, exposure anxiety, and auditory processing disorder. Though oral motor apraxia is one thing that is starting to be taken seriously as a common barrier to speech in autistic people.
It’s not that you personally just aren’t trying hard enough! But when people close to a non-speaking person have already decided, or been told and believed, “this person does not communicate,” when this is a pervasive prejudice about non-speaking and non-verbal people, that puts you at risk of not seeing genuine attempts at communication as communication.
“Totally non-vocal” does not mean non-communicative.
I don’t know if you know, but every year for the past couple of years now, a tweet chat called #AutINSAR (#AutIMFAR in 2017) has been held during INSAR, which is the biggest annual conference on current autism research, to put autistic people directly in touch with researchers to talk about research priorities and goals. And something that always tops the list of priorities that autistic people wish research would pursue is better and more available AAC, and how best to enable people with the most intense communication challenges.
Instead of continuing to throw millions and millions of dollars at trying to make mice autistic.
That is what I mean when I say “We can do better for non-verbal autistic people.”
Not that it is going to be easy or magical or somehow we will be able to turn every non-speaking person into someone who can communicate conventionally and articulately.
But we can do better than writing off non-verbal people as “just can’t communicate,” and we need to.
I agree with everything that has just been said. So what I’m about to say is not meant to be a contradiction in any way. It is only meant to highlight another problem that also happens.
I have seen autistic people online who vastly oversimplify the communication issues some of us face. By which I mean I have seen people right here in the past. Who were talking to parents they did not know, about children they knew nothing about. And the parents said their child could not speak. And the response was basically, “Well, obviously you’ve never provided them with the means to type.” This was not something that just happened once. I have seen this over and over and over again. This idea that if you just give a nonspeaking person a keyboard of some kind they will just suddenly be able to communicate by typing in a way equivalent to a speaking person. Or be able to do so at all. And that if a person is not speaking or typing it was obviously because they’ve just never been given a keyboard.
And that is unfortunately ridiculous. Like blaming people for their child not having an easy time communicating in words that other people understand, without even knowing the people involved, is crossing so many lines I don’t even know where to start.
And I use augmentative communication myself. I am the vast majority the time nonspeaking and have been for a long time. I use both a keyboard and a picture based system. I understand what’s at stake without these communication systems available.
But communication problems are a lot more complex than handing someone another way to communicate. When I was capable of speech, I was much less capable of communication. My typing was more communicative than my speech, but not by a lot because the communication problems went deeper. And I had to learn certain things about receptive language before I could translate those things into expressive language. So I had very complex communication problems that were not always fully understood. And even though I now communicate fluently and with actual connection consistently between my thoughts in my words, there are still issues.
And those issues are not solved by keyboards or by Unity. They are more complicated than that. The same way that someone who speaks can have a good deal of communication problems, even ones where they look fluent but are not communicating their thoughts. You can have all kinds of communication problems that are not solved by getting someone a device of some kind.
And there are people who are not capable for lots of reasons of using any of the current devices. Some of those problems can be solved with better devices. Some of them cannot.
And some communication issues are solved by understanding how many ways there are to communicate out there. Because no matter how many communication issues I have had or not had, I have had ways that were easier and ways that were harder. Words of any kind are never going to be my first method of communication. They are what I am known for, for writing, but this is like not a second language, more like a fifth language. And the ways in which I communicate most naturally, and the most effectively, are still considered at best third-rate by most people. And there are people who can only communicate in those ways.
I can communicate by handing people objects.
I can communicate by arranging objects.
I can communicate by many different forms of music, and many uses of music.
I can communicate by how I react to my environment in a moment to moment way.
I can communicate by how my body moves.
I can communicate by very subtle variations in how my body moves, but that can normally only be picked up on by other people who communicate in the same way.
I can communicate by interactions with my physical environment.
I can communicate intentionally. I can communicate unintentionally. These are both communication.
I can do things that look exactly like communication and don’t mean a damn thing.
And it is only because I can do words sometimes, in ways that are undeniable, that I am acknowledged as communicating at all. If someone can’t do words, or can’t do words in a way other people take seriously, they can have all of those other means of communication and people won’t notice or give a damn. And there are lots of people in that boat. And not all of them will ever do words. And the only way to make the world okay for them is to understand how they communicate and acknowledge it as equal to anything we do with words.
I feel very strongly about this because in a very close alternate universe that could be me. And some of the time it is me. Because even at my best, words are not always there, and I am not always around people who know I can ever do words. And in those situations I am as vulnerable as someone who can’t do words. Even though I have the advantage, which is an extreme advantage, which is one reason I do this despite heavy costs, of using understandable language a lot of the time.
But I do feel like I need to speak up for people who communicate only in the ways that I best communicate. And who cannot and will not ever use words in any form.
Because they are important. They are people. They have full and important ways of communicating. And they are usually seen as nonspeaking non-typing noncommunicative. And that is all people see. They don’t see the richness of what they have. They only see what they don’t have. And they approach people in that position in terms of how much can we bring your communication towards something that looks like words.
Because that is what makes them comfortable. People are not comfortable with someone who can’t do words ever. Lots of autistic people are not comfortable even with the existence of people in that position.
And some people will never do words.
And some people will refuse to do words. Because some people will weigh up the costs, and determine that for themselves, words could never be worth what they will lose. This happens.
It’s not considered okay to acknowledge this happens. Because it comes very close to blaming people for not being able to do something. But it is more like weighing up whether going into the death zone of Mount Everest is worth it to you. And to most people it is not, for good reason. Some people will go into the death zone, but it’s a questionable decision. And some people will decide not to, but deciding not to is not the same thing as deciding flippantly that you don’t wanna eat carrots tonight or something. If you get the distinction in the kinds of decisions I am trying to talk about.
I do want to qualify that. Because there are people who very much have a total understanding of language, use language in their heads, want to communicate in language, and have massive issues with something causing them to not be able to simply type it out. And they from the outside can look exactly like someone who will never be able to use words. Who also, from the outside, can look exactly like someone who refuses to use words because for them words are the Everest death zone. And it is important to understand all of these people exist, all of these people have important communication needs, all of these people can look alike to outsiders, and all of these people are important and different from each other.
I had a friend for a long time who could not communicate by any standard means. She had many ways of communicating, but she could not speak, she could not type, she could not do picture symbols. She could not do any of these things in a way that communicated much of anything useful to her.
She wanted those things to work. If she saw a keyboard she would type on it very insistently. But she would type random letters. Then when it spoke out loud she would become frustrated because it was not saying her thoughts. She was well aware that handing someone a picture symbol was a means of communicating. She tried very hard and she could be very forceful about handing you picture symbols when she had something to say. And you could tell when she really wanted to say something because of her body language when she did it. But she could not choose the symbol that matched what she was thinking.
So she would hand you symbol after symbol after symbol, getting more and more frustrated. And eventually in all of these situations, she would start screaming and scratching herself. She had scars all down her arms from her own fingernails.
And I don’t know where the disconnect was. Whether it was cognitive or motor or something else. But there was an obvious disconnect. She was extremely frustrated by it. And it was obviously not solvable by doing anything simple.
Weirdly enough her staff saw her as not motivated to communicate. She was one of the most motivated people I have ever met. She invented her own means of communication from scratch, as far as I could tell, so she was motivated. She knew she wanted to say things. She could not get them from her head to outside her head. And this obviously made her extremely frustrated a large amount of the time.
And there are people online who do not seem to know that people like her exist. Or even really that people like me exist. Like they know I’m here. But they don’t know that I deal with complex communication problems of my own that are not fully solved by the addition of a communication device. That it’s not as simple as oh stick a keyboard in front of Mel and sie will communicate perfectly. That’s kind of how some people want it to be. They want all of us who communicate mostly by typing to be tidy that way. But most of us are not that tidy. Most of us are not that simple. Even when we are able to be fluent by typing.
So I agree with everything you’ve said for a number of us who are really working on this. And who really understand what is going on.
But I also know there are number of people out there who are woefully ignorant of the problems facing nonspeaking people, and nonspeaking non-typing people. And who literally want the solution to be, throw a device in our general direction and a miracle will magically occur. And if the miracle has not magically occurred it’s the fault of everyone around us.
Anyway, I have actually written about this before, and I wrote about it better. So you can also go here:
And just read what I wrote there. But basically everything you’ve said is totally accurate for a large group of people who do know what they’re doing and do care a great deal about communication issues for people with autism labels.
I did though just want to add that there is unfortunately, as you probably know, a really large number of people out there who don’t get it. Who are autistic but just don’t get it about what some of us are dealing with in communication issues. They desperately want it to be simple. And unfortunately for them, and unfortunately for those of us they run into, it is not simple, and it does not work how they think it works. Some of them tried to treat me as if I am just like them only with a keyboard, and that just doesn’t work out. So that is unfortunately out there too.
^ This. And there are also people who don’t even try to offer alternative communication, so a person who can’t make their communications understandable never gets a shot at all. I try to shout for them to get some shots at it and be allowed to try different methods. Maybe a combination of two or more will work, maybe none will. But they deserve to *try* and many parents / caregivers don’t let them try.
Yeah that absolutely happens a lot. The people I’m talking about are specifically people who don’t even check to figure out whether someone’s tried other communication strategies before doing the yelling. They just literally assume if the person isn’t speaking, no other strategies have been tried. Yelling is absolutely appropriate under a lot of circumstances though. Especially when people refuse to try other strategies, that when I get pissed.
And if anyone wants to know it’s called “The Crochet Lite” and I know they can be found at some craft store chains (I got mine at my local yarn store though).
I often take my crochet into dim lighting, so my kids and husband made sure I had these almost as soon as they came out.
Newly released emails show senior Environmental Protection Agency officials working closely with a conservative group that dismisses climate change to rally like-minded people for public hearings on science and global warming, counter negative news coverage and tout Scott Pruitt’s stewardship of the agency.
John Konkus, EPA’s deputy associate administrator for public affairs, repeatedly reached out to senior staffers at the Heartland Institute, according to the emails.
[…] The Heartland Institute calls itself a leading free market thinktank. It rejects decades of science saying fossil-fuel emissions are altering the climate and says on its website that curbing use of petroleum and coal to fight climate change would “squander one of America’s greatest comparative advantages among the world’s nations”.
“Of course The Heartland Institute has been working with EPA on policy and personnel decisions,” Tim Huelskamp, a former Kansas Republican congressman who now leads the group, said in a statement.
“They recognised us as the pre-eminent organisation opposing the radical climate alarmism agenda and instead promoting sound science and policy,” Huelskamp wrote.
We have a baby and we barely make any money. We are working our asses off to remedy the money part. (The baby is perfect. there is literally no reason for me to make that point, except they’re so perfect and amazing??? how?????)
That’s all fine, except also? We had to kick out a housemate who was (1) not paying rent, (2) not taking care of his cats, and (3) I don’t think a need a third.
He couldn’t bring his cats to his new place. One of them is like 16 years old and the other one only has 3 ¾ legs, I don’t think they’d do great in a shelter, so we adopted them.
Turns out the older one has had chronic urinary tract infections for literally years, and that’s why she wouldn’t use the litterbox. (Which by the way is why that room is now UNUSABLE, so we can’t rent it out to replace that money. I mean: that, and the fact that the former housemate wasn’t cleaning up after her at all. that’s actually #3 in the list of “dude, you gotta leave.”) And she also has severe dental problems and chronic infections around that.
Turns out the younger one should have had medical care for his ¾ of a leg when he was little, and it was getting re-injured and infected.
So far, in just the past month, between urine cultures, and bloodwork, and regular vet fees, and emergency vet fees, and prescriptions, we’ve spent almost a thousand dollars (that we definitely didn’t have) on vet care. (It was $237 + $267.23 + $57.50 + $45 + $21.75 + $346.48 = $974.96.)
That took care of Monkey’s infected leg: he still has to wear a cone for another week, but he is finally happy and feisty and curious and having a good time.
And it took care of Lola’s urinary tract infection, which must be a huge revelation for her after all these years. She is happy too; she loves finally getting the attention and love she needs (so’s Monkey) and has totally integrated into the family.
BUT not only did we not have a thousand dollars to spend, the vet also quoted us $1,800 for dental surgery, and is really emphatic about getting it done ASAP. (oh right, and the old housemate owes us $2050 on top of that, which we’ve had to front for his bills etc., and which I can near-guarantee he is never going to pay. yiike. and yes, we’re getting ready to take him to small claims court.)
And the other vet quoted us $5,000 for surgery for Monkey’s leg, to keep it from continuously getting re-injured and re-infected. (and yes, we’re getting other quotes! because Yike.)
oh right – and we have to get the floor of the ex-housemate’s room totally refinished, because it is never going to stop smelling otherwise, and even if it did… it’s literally buckled from all the cat pee.
So we’re passing the hat.
Please, please donate if you can, and signal boost if you’re willing!
incidentally i fucking love all of you. Fun fact: although some of the (three) donations we got from Facebook were bigger, within a day we’d gotten more donations from posting once to Tumblr than from posting repeatedly to people we actually know in person on Facebook. ❤️💖❤️💖❤️😻😻😻😻
Urocyon's Jaunts 2.0 
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