Tag Archives: actuallyautistic

I am a Story

I have a ramble about stories and storytelling wandering around in my head, but I’m not sure how to start it. I guess I’ll just do my best. 

I have been doing therapy work around unpacking and processing childhood trauma. One of the ways I conceptualize this process is that I am re-writing the story of myself. My entire concept of myself is of stories – I don’t think there is a huge difference (if any) between the concept of “me” and the story of me. I am the story I tell about myself. We are all the stories we tell about ourselves. 

Jumping a bit (and this is relevant, I swear) – let’s look at the concept of history. When I was young I thought “history” was simply events that happened in the past. But that’s not accurate at all. History is the STORY we tell about the past. Yes, it is about events, but it is also our ideas of which events were important. Who was the good guy, who was the bad guy, how did this event or that event impact who we are now. People who complain about “revisionist history” are missing the point. ALL history is revisionist. As societies grow and change, as our concepts of right and wrong shift and alter, the way we look at history changes as well. This is good and correct – it SHOULD change as we do. So the stories of history change as well, even while the framework of the actual events stays the same. 

The stories of ourselves are similar. I look into my past and I choose which events are Important enough to be part of the story that I tell, while other events fall to the wayside. As I grow and change, so too does my story. A villain may become a hero; a hero may become a villain. A memory that used to be connected to shame may change and become connected to pride. The events of my past do not change, but the way I understand the events does. 

I firmly believe that this is what stories are supposed to do – all stories. We tell and retell our stories – of ourselves, of our society, of our past, of our myths, of our beliefs, of our ideas, on and on and on – and over time those stories change and change again. 

My current favorite example is the Greek story of Persephone and Hades. The story that survives to us is a story of kidnapping, betrayal, and trickery. Within that story, Persephone has little to no agency and is largely a victim. Well, I have been seeing people retelling that story, giving Persephone agency and choice. A story of her falling in love with darkness and choosing to live with Hades. I have also seen people get very angry about this, because that is not the story! Stop adulterating the story! While it’s true that the original story (that we know of, who knows if the story we have is the “original”) is not like that, I actually LOVE the way people are retelling it. I don’t see it as forgetting the original story or romanticizing abuse – I see it that somehow this ancient story is still alive. It still speaks to people, and so we retell it in a way that shows what we love, what we value, what we need in our heroes, how we imagine our dreams ending. 

Which brings me to my next point – stories are things that we TELL. Stories are for sharing. This includes the stories that we create about ourselves. We all share our stories of ourselves any time we connect with another person. Yes, it can be literally telling stories of Important Events in our lives, but also in our songs, our fictional stories, our beliefs, our hopes – everything of who we are is part of our story. 

And like any other story, it is told collaboratively. People are telling their stories of Persephone to each other, and in each telling it changes. It becomes what people want and need it to be, and collectively people come together to create a story together. When an author writes a book, they share drafts of it, take the feedback and input, and make adjustments. Even with one author, the work has a strong collaborative element. 

Humans are interconnected and interdependent. So are our stories. We tell them to and with each other. Every person in my life has contributed to my story. Every person in your life has contributed to yours. The society in which I live shapes my story. The values I grew up with, even if I eventually discarded many of them, shape the Story of Me. 

Which means that if I choose to rewrite part of my story, that needs to be done collaboratively too. My story has always featured my own weakness and failure. I am trying to change it into perhaps a story of strength and survival, but the basic fact is that I can’t make those changes alone. The version of my story that was written when I was young got its start before I even took ownership of my story. Before I was even able to create my own story at all. I was handed a story of my own inadequacies when I was far too young to even realize it was possible to choose a different story. 

So that is what I am trying to do. And while yes, I am the author, like any author it is not a task I can undertake alone. Why would I even want to? 

Stories are important.

Stories are collaborative.

Stories change.

Stories are Us.

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I am working on being impulsive

I’ve written about this in the past, years ago, but I don’t feel like rummaging through my old posts to link them. Suffice to say – I’ve been working on this for a long time. 

Normally when I see people writing on the topic of impulsive actions, it’s about how to curb them. I’m lucky enough to be the opposite – I am not impulsive at all. Ever. Or at least, I didn’t used to be. I’m working on it. 

I don’t think I’ve ever read or heard anything about encouraging people to be MORE impulsive. The general societal idea seems to be that impulsiveness – especially if it crosses some invisible boundary into *too much* impulsiveness – is a bad thing. Except impulsive behavior is part of a larger category of behavior that very much IS valued by neurotypical society. It includes things like being spontaneous and adapting to last minute changes in plans. Basically, it’s a category of doing-things-that-were-not-planned. I’m sure absolutely no one will be surprised when I say that this category of behavior is a weakness of mine.

Sudden changes in plans are truly TERRIBLE for me. I have managed to develop some techniques that help me cope so I at least CAN function when plans change without warning, but I will never be a person who can happily just “go with the flow” (whatever that means). 

I am not spontaneous. Ever. I don’t want to be.  Right now I’m just leaving this one alone. I know it limits how much I can participate in neurotypical society, but I honestly just don’t care. Why would I want to participate if it involves doing something so unpleasant? Ugh. No thanks. I’ll plan everything I do, thanks.

Of course, that is closely linked to impulsivity, and that is something I AM working on. And yes, sometimes the line between the two is very very blurry. 

Years ago when I first started working on practicing being impulsive, I decided to try to make an impulse purchase at the grocery store. This was remarkably difficult, but I did manage it. I’m not sure how much it still counts as “impulsive” when I’m agonizing over my decision for at least 10 minutes, but still. Anyway, I got a sweet snack.

Can you guess what happened after that?

I made that particular snack part of my weekly shopping trip. Yep. Leave it to me to plan my impulsiveness. 

Eventually I figured out that if getting Snack was part of my weekly plan, that meant it wasn’t an impulse purchase. Whoops!

Anyway. Now it’s several years later and I’m trying again. I’m actually doing much better this time! This time around I make a point to NOT deliberate more than a few seconds on what I’m grabbing, and I vary what I get from week to week. It’s generally a salty snack of some type (look, I still need SOME structure, ok?), but which one will vary depending on what’s in stock, what I happen to spot, and what I “feel like.” Ok, that last one is a bit mysterious to me, but I’m still trying to use it. Do I “feel like” having some doritos? Or maybe some pringles? Maybe the fritos just look reeeaaally good one day. 

I’ve only been doing this for a few months, so this new attempt is, well, pretty new. I was SO damn proud of myself when I managed to be impulsive twice in two weeks. 

Now, I said I have no desire to be spontaneous, but maybe that’s kiiiind of not true. Some of my impulse practice is, I think, crossing that line into spontaneity. Sometimes I think “hey, it might be nice to go to the ice cream shop and get some ice cream!” And then! I do it! WOW! 

As for HOW I’m managing this incredibly difficult task – part of it is definitely support I’m getting from my nesting partner. They know I’m no good at being impulsive, so they provide emotional support and encouragement when I grab that bag of chips. I also arrange structure AROUND impulsiveness. My partner and I go grocery shopping on the same day every week, at roughly the same time. We have a specific pattern we follow. So I feel like I have firm footing, so to speak, when I try to do something less than planned. 

Those ice cream outings? They are always at about the same time in the evening every time. It’s always to the same ice cream shop. I always get the same flavor of ice cream. 

I will always need a lot of structure in my life. But it really helps to know that I get to make my own structure, in the form that works best for me. And I can create structure even around unstructured things – I can create boundaries around them so I don’t just feel unmoored and out of control. 

In the end, that’s really what I’m practicing when I practice being impulsive. It is highly impractical (and possibly outright impossible) to plan and structure every single thing in my life and every single thing I do. I used to try, and would seriously fall apart when those plans went awry. So I build my plans with contingency plans, and contingency to the contingency plans, and flowcharts, and plans that are more about working within some pre-defined structure than an exact itinerary, and I am working on making spaces for No Plan. 

And I’m actually doing it!

I am very proud of myself.

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I went and got a massage

Art from here.

So I recently posted a brief ramble about self care. In it, I mentioned that I’ve been having pain due to rather significant muscle tension, and that it might be in my best interest to get a massage. While some people treat that form of self-care as something froo-froo-y and silly, it’s actually a difficult thing for me to do. I’m really not a big fan of strangers touching me.* As in, I actively avoid shaking hands with people I meet if I can possibly help it. I don’t want to touch anyone (or have them touch me) in ANY way until I know them and am comfortable around them. A massage involves a complete stranger TOUCHING me. AAAALLLL over. 

In any case, I did get a massage because I was hurting so much it was impacting my ability to function. And yes, it was DEFINITELY uncomfortable for me. I chose to cope with that discomfort by leaning into it and embracing it. Trying to avoid the feeling or make it go away wouldn’t work, and almost certainly would cause an increase in tension. You know, the exact opposite of what I wanted. Accepting that it was uncomfortable and my discomfort was ok actually helped me to relax. 

After I had scheduled my appointment, I spent hours wondering exactly how much to tell my massage therapist. Do I admit that I’m nervous? Do I disclose that I am autistic? Do I explain that I am averse to touch? I really struggled with how much to tell. In the end, the decision was kind of made for me – turns out English was not her first language, and while she spoke it perfectly fine, I have some trouble understanding accents that I am not familiar with. So I admitted that I was nervous but left everything else out. 

She was very sweet about it and made it clear that her job was to give me as relaxing an experience as possible. So that helped. 

The only other issue was that it is incredibly difficult for me to ask for anything. At all. In any way. So while she said that if I wanted her to go firmer or more gently all I needed to do is ask, I mostly didn’t. Even when I wanted her to change something. Because I would need to ASK! Which is HORRIFYING! Ok, that’s just a me-thing, but I’m mentioning it anyway. 

For some people (possibly many people) going out and paying for a massage is nothing more than a pleasurable indulgence. For me, it’s a challenge that requires a Big Reason to justify doing it. I happened to have a Big Reason, so I gave it a try.

Oh, and it did help a whole lot. The problem isn’t fixed, but my muscle tension is far better than it was. What used to be significant pain is now simply minor discomfort. Now I need to decide if I want to go again in a few weeks to continue to take care of myself. It’s a tough decision.

*This reminds me of a story! It isn’t really relevant to the post, but I want to share it anyway. I was talking to a friend I once had, and at some point my touch aversion came up. I said that I hate any kind of social touch with strangers. He just rolled his eyes and informed me that everyone is like that – no one wants to have long, lingering hugs with strangers. I just blinked at him for a few seconds before stating that I was under the impression that most people are totally comfortable with shaking hands with strangers. Said friend replied that he hadn’t even thought of that as social touch. The conversation devolved from there. In any case, isn’t that such a thing? We try to explain something to an NT and they just minimize and generally don’t listen. It can be so frustrating sometimes.

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Another Empathy Ramble

Image by Tumisu, please consider ☕ Thank you! 🤗 from Pixabay

I know. Empathy is always being talked about on autism blogs, and here I am, also talking about it. Yep, I’m a cliche. It has been a while for me, though.

So one of my problems with the whole concept of empathy is how mushy of a concept it is. It means a wide variety of different things, and people often mean different things when they say it. Talking about empathy without elaborating on what one means by it is an exercise in futility.

For example, a therapist youtuber I used to watch would speak of empathy specifically as intellectually understanding what another person is feeling. He would refer to the concept of “feeling something with a person” as “sympathy.” Then there’s that popular Sympathy vs. Empathy thing by Brene Brown. She has a very different take than that therapist – according to her, “feeling something with a person” is empathy, and sympathy is… bad. (not really related, but I did not like that video for my own reasons, though I do understand that many people found it helpful) 

On a recent occasion I had reason to talk with my therapist about sympathy and empathy and, of course, needed him to elaborate on what he meant when he asked me if maybe I wanted empathy about a thing I was going through. In his case, apparently he means someone being “with” you in your feeling. 

So. Empathy means various things. That’s actually ok – lots of words mean different things – but it does mean that we need to clarify our intent.

For years now I have been using the ideas of cognitive empathy and affective empathy. Basically, cognitive empathy is what that youtuber therapist talks about – intellectually understanding what another person is feeling. The idea that autistic people lack empathy is specifically regarding cognitive empathy. I don’t always have a great grasp of what another person is feeling. I struggle to understand facial expressions. That kind of thing. Unfortunately, people often take it to mean that autistic people lack the kind of empathy that Brene Brown talks about. Or basically, that we don’t care.

That is affective empathy. It’s the emotional side of empathy. And autistic people tend to have that in spades (insert disclaimer here about how autistic people are individuals with individual variance, etc etc etc). I care about my friends. I care about my cats. I care about what they feel and why they feel it and I want, very much, to be a safe person for them to have those feelings near/around/with. 

Anyway. I was googling empathy again recently, I don’t remember why but probably in response to that conversation I had with my therapist, looking for sources about cognitive vs. affective empathy. Among the various other things I found, I saw an interesting article breaking empathy down into THREE types, rather than two! Fascinating! Now, I wasn’t the biggest fan of how the information was presented (this seems to happen a lot with me. Not sure what to make of that) but putting that aside, it was an interesting breakdown.

Basically, the author of that article takes what I think of as “affective empathy” and breaks it into two different ideas.

1 – Emotional Empathy. The “feel it with them” idea. 

2 – Compassionate Empathy. To care. More precisely, to care enough to want to help in some way.

This is interesting to me. I’m not sure I’m going to adopt this system over the two types of empathy that I’m used to, but at the very least it’s giving me something to think about. I enjoy taking broad concepts and breaking them down into concrete pieces that I can closely inspect. 

There is very little out there that will make me better at cognitive empathy. I have hypervigilance due to my own childhood stuff (which is to say, I am very observant), I have a general intellectual understanding of facial expressions that I have learned by rote. These two combined are enough for me to generally get by, on the cognitive level. Unfortunately, many people view cognitive empathy as the most “basic” form of empathy. So when cognitive empathy fails me, it is not uncommon for people to conclude that I must not care. Because if I don’t have cognitive empathy, how could I possibly have emotional or compassionate empathy? 

It doesn’t work like that. 

To diverge a little bit – I find myself wishing there were a word for a kind of empathy that understands that not everyone responds the same way in the same circumstance. The article I linked above talks about putting oneself in another person’s shows – imagining how you would feel in their circumstances. This is, of course, a really great practice. It just falls short sometimes. People imagining themselves in my shoes often seriously miss the mark on how I’m feeling, because they would feel something wildly different. This kind of falls under cognitive empathy, but then it ends there. By the article, emotional empathy would be impossible in a situation like this, which is just not the case. I can empathize with people just fine when they react to things differently than how I would, because I understand that different people respond differently and that’s ok. Their truth is still entirely real. I just have to approach it a little differently. 

Anyway. I’m not sure I have a huge point here; I just wanted to explore these ideas a bit. Do you have a model of empathy that you work with? Do you have any ideas for what to call “I cannot directly understand what you feel but I accept that it is your truth and care very much about how you feel” empathy?

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Roe v. Wade – some thoughts

I grew up in a pretty conservative Christian denomination/cult. It doesn’t really matter which one – the point is they were Conservative. As in, they considered themselves downright progressive because they allowed women to wear pants. They unironically thought that having an “open mind” was a bad thing. Because it “made your brain fall out.” And they were absolutely dead against Roe v. Wade. Abortion was murder and there was no convincing them otherwise. 

They weren’t the type to protest and scream at people outside of abortion clinics. They WERE the type to have an annual abortion protest along a highway. Of course, my family went, which meant I was there as a young child. I was completely steeped in it. 

My view has completely changed as an adult. I really am progressive now; left enough that Democrats annoy me with how conservative they are. Even so, I remember clearly what it was like. What their thought processes were. And, sadly, the things I used to say when I was parroting what I had been told. 

They do focus really hard on the idea that abortion is murder. Many of them truly do believe it. A fetus is a person and that’s just all there is to it. The fact that it relegates anyone with a uterus into little more than an ambulatory incubator was not given any consideration. Of course, I say “anyone with a uterus,” but they certainly didn’t. I had no idea trans men existed at that time. My own loathing of womanhood was A Problem. But that’s besides the point. The point is, if you had a uterus, you were a woman. And if you were a woman, you do not really own your own uterus.

Obviously, they didn’t feel this way about any other organ. No one was expected to go through mandatory liver donation in order to save lives. Donating your organs after you die was considered a personal choice – because you own your own organs, even when you’re dead. Even if you don’t need them. Even if it would save a life. Even if you would probably be fine afterwards, or wouldn’t miss it at all (because, you know, dead). The obvious double standard went by completely unnoticed. 

I can remember saying trite little things, nice pat answers to the protests of why abortion should be legal. “A fetus is a person” I would say. In the case of assault, “don’t punish the baby for what its father did.”  Yeah, it was awful. I saw awful things, and I regret them. I was also seriously brainwashed by the environment in which I was raised. I am so very glad I escaped.

And yet, here we are. The people who think that way are in the minority in my country (the US, if that wasn’t clear), but it’s starting to look like that might not matter. And that TERRIFIES me. 

People having autonomy over their own bodies is so incredibly vital. Ok, this one point is about abortion, but the greater landscape it sits on covers so much more. It used to be illegal to be gay; for two people of the same gender to have sex. But because we should get to decide what we do with our bodies, people pushed for that to change. 

And yes, it also touches on autism, because we are STILL fighting for autistic people to have the right to own our own bodies. Things like “quiet hands” and training children to not rock or stim in general. Training children to tolerate being touched by anyone who wants to touch them. Training children to be compliant, to be obedient, that what other people want is more important than their needs or their safety or their own claim over their body. 

I was lucky (if you could call it that) in that I was given that training implicitly. I did not have to go through ABA or the other therapies that are explicitly about training autistic children to hide their needs and their pain and to assimilate into a culture that does not care about them at all. Even so, I entirely internalized that what other people want from me and my body is more important than what I want or need, and that I do not truly have ownership over my own body. 

It led me to be in some bad situations.

It led to me getting hurt.

And I still struggle with it. I will quietly endure pain and sensory overload because I know other people are just enjoying the music being that loud, or the lights being that bright. I KNOW, deep down inside where my logic can’t touch, that what they happen to like is more important than my pain or my ability to also be in that space. 

On a side note, I also have Thoughts about this idea that it only means it will become up to the states to decide. I find it sad just how much the rallying cry of “states rights!” has become a red flag for me. I mean, I may be very far left, but I am still an American. I like decentralized government. I like leaving matters up to the states if they can be. But human rights IS NOT a matter that can be left to the states. And somehow, the cry of “states rights!” always seems to pop up when we’re looking at denying a group of people some right or another. Somehow, those are people who only seem to care about states getting to choose their own laws on a matter when they are hoping the states will choose oppression. 

I don’t have a uterus anymore, and I am VERY glad for it. Back when I did have a uterus, I had a whole series of things I would do if I somehow ended up pregnant – the first option was abortion, and the last option was s*icide. THAT’S how serious it was to me. And it’s not just me – it’s that serious to a whole lot of other people. 

So yeah. This is horrifying to me, on many MANY different levels. 

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Self Care – what is it, anyway?

Image by Gerd Altmann from Pixabay

Ok, fairly regularly I’ll see things about self care. Specifically, the importance of self care and various examples of self care. These are great! I love self care and I love seeing people promote self care.

But sometimes I then see arguments about self care. Different people have different needs, and so self care often looks different for different people. Pretty straightforward, right? Well, sometimes Group A will declare that THEIR needs are more real and important than the needs of Group B, and so the self care of Group B does not actually “count” as self care. For example, taking meds vs. taking a bath, or keeping doctor’s appointments vs. drinking a hot cocoa.

I’ll be honest – that irritates me. Kind of a lot. The reality is it’s ALL self care. ALL OF IT. Self care is simply identifying your needs, and then fulfilling them yourself. No more, no less.

Let me use myself as an example. I deal with pretty severe depression and anxiety. So my self care involves taking my meds every day and keeping my appointments with my therapist, as well as working hard in said therapy. 

Something is wrong with my sense of thirst, so it’s way too easy for me to get dehydrated. Like, to the point that it’s landed me in the hospital in the past. So my self care is also working hard to remember to drink water. Since I can’t trust my body to tell me how much water I need I simply make a point to drink 64 ounces of water a day. By extension, my self care also means not listening to the people who try to tell me that the 64 ounces thing is a myth and I’ll totally be fine if I just drink when I’m thirsty. I won’t be ok if I do that, I haven’t been ok doing that, I am taking care of myself in the way that I need to. 

I have been experiencing pain for several days now due to a muscle in my thigh being about as tight as an iron rod. This means that self care might be (if I actually manage to do it) taking a hot bath or maybe going and getting a massage. Oh, and it’s legitimately way easier for me to take my meds every day than it is for me to go draw and take a hot bath. Why? One is in my routine, and one isn’t. 

Self care can mean that I carefully limit my exposure to stressful news – being as informed as I can handle, but taking breaks when I need to. It can mean having a hot cocoa and doing breathing exercises when my stress levels get too high, or maybe when I get too irritated at people telling me that I don’t need to worry about my water intake (seriously, this drives me bonkers). 

Ultimately, just to really hammer in the point here, self care is taking care of myself. It involves a wide variety of things in order to address my various needs. I am a human being, just as complex and contradictory as any other human being, so my needs reflect that complexity. 

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Another Rye Post

Rye. Napping. In my lap.

I don’t know if I’m making a point with this post or just rambling, but I’m going to write out what I’ve been thinking about anyway. 

But let’s start with a brag. Rye’s comfort zone has grown again! It now includes (drum roll please) my lap! For over a month now she has spent time in my lap every single day. And by “time” I mean hours. I mean hanging out, taking baths, and sleeping. This is absolutely INCREDIBLE. For years I literally would say “Rye will never be a lap cat” and now look at her, blowing every limiting expectation I ever had out of the water. Sure, she doesn’t develop socially on the same timeline as other cats – but she still develops. 

Anyway, while developmental timelines are certainly an important thing to talk about, it’s not why I’m writing right now. It’s just been the trigger for some feelings I’ve been having. I mean… it’s been a trigger for a LOT of feelings, but I just want to talk about one in particular. Specifically, I want to hold her.

This is nothing new. I have wanted to hold her a lot since I adopted her. It’s just that now that she sleeps in my lap, the desire to gather her up in my arms and hold her close is SO INTENSE. I love her very, very much and I want to express that love with hugs and cuddles.

Rye would not react well. With a lot of work and a lot of trust I can kind of hold her in small ways. Like, if she’s sitting in my chair when I want to sit down, she’ll let me pick her up and put her in my lap (itself such a huge thing for her! seriously!). But scooping her up and hugging her close? She would probably panic. If she didn’t panic, she would definitely hate it. She needs to feel safe, and part of feeling safe continues to mean not being confined or restrained. She knows she can run. 

So because I love her, I don’t hold her. My desire to hold her is all about me. I wouldn’t be showing her love at all if I did it – I would just be fulfilling my own desires. The thing that matters most is what she needs from me. What I can do so that she knows I love her. That means paying attention to what she responds to, not just stomping all over her with what I think she “should” respond to. 

Like other people have done to me.

I have my own limitations too. I also do not do well with being held. Additionally, I absolutely cannot stand being lightly touched or brushed. Sometimes people have wanted to express love or affection for me via those things that I really can’t deal with. And sometimes instead of respecting that I need affection to come in other forms, they’ve gotten angry with me! Or tried to explain to me that I SHOULD find those things enjoyable. Or thought that they should “fix” me by forcing me to endure it until I “realize” that it’s actually nice. Or even decided that they just can’t be close to me, because to be close to a person they have to be able to express affection in a way I hate. Honestly, that last one is almost understandable. It’s certainly less bad than the other ones. 

In any case, none of those reactions were rooted in love or affection for me. They were about the other person putting their own desires above my needs. This happens to autistic people entirely too often. Our needs are weird or strange or feel wrong to other people, and people don’t always react well to those who are weird or strange or feel wrong.

But the fact is, part of loving someone is knowing that what they need is more important than what you want. Showing my love to Rye means (among other things) putting aside my own desire to hug her in favor of the simpler pets and ear rubs that she enjoys.

To add – recently she has actually begun to allow me to hold her in small ways for brief periods of time. I ADORE this. I also recognize that I am still not showing her love when this happens. SHE is showing ME love by letting me do it.  

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Do I “Deserve” To Exist?

Have you ever noticed that it seems we need to justify our existence?

And by “we” I mean everyone. Literally everyone. It’s just that some people seem to have a head start and find it easier to make that justification than others. 

Ok, I think it’s easiest to explain what I’m talking about by starting with minority representation in fiction. The “default character” is a white, straight, cis, fully abled, gainfully employed man. The more a character deviates from that starting line, the more people will demand that the deviation be explained and justified. Sometimes this is extreme – there won’t even be a woman or a character of color unless the plot demands it. But even when it isn’t so extreme, it’s always there to some degree. Disabled characters are incredibly rare in fiction, and even MORE rare when the story doesn’t demand it. The more a character deviates from the default, the more people find it outlandish. “What’s next, a deaf lesbian Lebanese character?” I have even seen people say that they are ok with diversity in fiction, but not “forced” diversity. Ok, how do they define “forced diversity”? Apparently that is any diversity in the story that isn’t justified by the plot. 

I’m not even kidding.

So of course, then you have people saying that hey, maybe you don’t need to justify the existence of varying types of characters. Deaf lesbian Lebanese women EXIST. Disabled people EXIST. People just ARE, no compelling plot reason required.

Buuuut… I want to take this a step or two further. See, the attitudes people have about diversity in fiction extend to their attitudes towards people in real life. Not only in terms of the various forms of bigotry (I mean, totally that too, there’s just more) but in terms of people needing to justify their existence. Just in general. All the time. 

The example that first got me thinking about writing this blog post was how “contributing to society” is considered synonymous with having a job that earns money. Do you have a job that makes money? Well no matter what it is you’re doing, you are contributing to society. Do you not earn money? Then you are NOT contributing to society, no matter what else you are doing. It’s an incredibly toxic concept, but it’s absolutely pervasive. 

It shows up in other places too, though. Like the concept of having to earn our basic survival needs. People will say that we must EARN our access to healthcare, earn the food we eat, earn the roof over our heads, earn the clothes we wear. These are all things that we need to survive. When people say that we must earn those things, what they are really saying – the idea that is behind their words – is that we must earn the right to exist. That we must justify our existence in this world by being “worthy” of existing.

As I’m pretty sure is obvious by now, I disagree. I REALLY disagree. I firmly believe that everyone should have access to the basic necessities of living. I believe that this is what society is for. I’m not looking to go into detail in this post, so I’ll just mention that there is increasing amounts of evidence that this attitude is also extremely economically practical. In the end, when the poorest among us does better, we ALL do better.

You can stop reading here if you want. I mean… ok, you can stop reading any time you want, obviously you don’t need my permission. What I mean is we got past the bit that’s about me being opinionated and now is the bit where I get more personal. 

See, I really, truly believe all those things I said above. I apply those beliefs to everyone…….

Except myself.

Apparently I have internalized the whole concept of needing to justify existence enough that I really feel like I need to justify MY existence.

And I feel like I’m not managing it. 

I can’t justify or defend the space I take up in society, in my friend circles, hell sometimes even within my own home. I know, intellectually, that I shouldn’t HAVE to justify or defend my existence. While plenty of random strangers have acted like my existence isn’t worthwhile, those closest to me don’t act like that at all. In fact, they seem to like that I exist. 

And yet, it somehow doesn’t sink in. I don’t work. I don’t have a job. I’ve done other things, like transcribing for the National Archives or house/pet sitting for people or heck, even this blog, but I don’t earn money. 

And even though I don’t think this about literally anyone else, somewhere deep inside I think this makes me a burden. On everyone. 

The thing that’s saddest of all is that I am far from the only person who thinks this way about themself. We’re taught that we need to earn our right to exist. Even if it shouldn’t be that way, even if we don’t actually believe it, somewhere deep inside so many of us still think that about ourselves. 

Something needs to change.

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Your subjective experience is not necessarily anyone else’s

Today I want to talk to the neurotypicals (NTs), about an experience I’ve had with NTs so. Many. Times. Autistic people are often accused of lacking empathy, but it’s the NTs who seem to truly believe that the way they experience the world is some kind of truth. That what things are like for THEM is what things are like for everyone. So they then take it upon themselves to EXPLAIN to anyone who experiences things differently about what things are “really” like.

Ok, let me get more specific. Group interactions are very hard for me. The social dynamics of groups are very complicated and it’s extremely difficult for me to keep up. On top of that, groups of people can be very intense on a sensory level. Trying to parse out everything I’m seeing and hearing is hard enough on its own, but trying to do it while also trying to keep up with the group dynamics and complex social interactions is nearly impossible. It’s just SO MUCH.

But trying to explain that to NTs is so hard. I have learned that many NTs not only find group social interactions to be easy – they find them easier than one-on-one interactions. And then they treat their own subjective experience of groups being easier as some kind of objective fact – that groups ARE easier than one-on-one. There have been multiple occasions where I expressed that actually, groups are more difficult for me, and an NT has straight up informed me that I am “mistaken.” According to them, my own experience of groups being more difficult is impossible so either I’m wrong or I’m lying. The nicer (not really nicer) ones will try to explain how groups are easier to try to get me to understand that I’m wrong. The less nice ones will tell me I’m stupid and stomp off. 

I’ve had NTs confidently tell me that there aren’t even that many social rules! Just jump in and start talking! It’s not complicated! The idea that there are, in fact, MANY rules and they just know them intuitively was one they weren’t even willing to consider. I did, eventually, manage to explain to one NT about the complexity of group dynamics by pointing out rude people. If you really could just jump in whenever, there would never be that rude person jumping in at the wrong time. If you really could just say whatever, there would never be that rude person saying the wrong thing. *I* am that rude person. I don’t want to be, I don’t mean to be, I really try not to be, but it really is just that hard for me to keep up. At this point, to avoid being the rude person, I just don’t speak in groups, or at least very rarely. 

I have so many examples of this type of behavior. NTs trying to inform me (or other autistic people) that loud noises don’t actually hurt. That light touch actually feels good. That the bright light isn’t really THAT bright. So many times, NTs arrogantly thinking that they way they experience the world is the ONLY way ANYONE experiences the world. That they just need to explain to me how mistaken I am when I say that something hurts, that something is hard, that I am struggling. 

Neurotypicals, please listen to me. When I say that something hurts, I am telling you the truth. Just because it doesn’t hurt YOU, that doesn’t mean it never hurts anyone. There are people out there who experience the world differently than you do – believe us when we tell you what life is like for us. 

Neurodiverse folks – what experiences have you had with NTs trying to tell you that you are incorrect about your own life? Please share in the comments! I would love to hear your perspective.

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Centaurworld – A Thought

Warning! This post will contain spoilers about the show Centaurworld

I’ve been watching through Centaurworld and I just saw an episode that gave me a thought. A thought that is actually somewhat relevant to my blog, so it’s post time!

We don’t really need to get into the nitty-gritty of the show and what it’s about for this post. So basically, our heroine, Horse, has been having adventures in Centaurworld. The adventures involve fear and trauma and struggle and victory and success and all that stuff. Basically, stuff that is a BIG DEAL for her and her friends. 

Anyway. So in this one episode she goes and meets the bird-taurs. And the bird-taurs are INFURIATING. I HATED them. SO. MUCH. Seriously, they gave me such an unspeakable rage!

Basically, it turns out the bird-taurs have been watching Horse and her adventures. They love Horse! They love the adventures! It’s so entertaining!

Yes, entertaining. They treat it as content. For them to consume and judge and comment on. The REALNESS of it is just… absent for them. Horse is over there trying to talk to them about serious things she is seriously dealing with and seriously needs help with, but to them it’s all just content. Entertainment. A show.

After the episode, I spent a little time thinking about just how angry I got over those bird-taurs. Then I realized something. What they were doing reminds me of inspiration porn and the way abled people consume inspiration porn. (I don’t want to get into it here, so if you want to read more about what inspiration porn is and why it’s bad, here is a post I found about it.)

In inspiration porn, the very real lives and struggles of disabled people are reduced to content for abled people to consume. To have FEELINGS about. And, yes, to judge. The actual lives of the disabled people in the images used for inspiration porn are not relevant. Their personhood is not relevant. The harm that inspiration porn does to disabled people is not relevant.

Which reminds me of a conversation I once had online. Basically, me and some other people with disabilities were trying to explain to abled people why we don’t like inspiration porn. The abled people were…. not really getting it. Eventually, we seemed to get to the core issue – one abled person finally just said (essentially) “yes, but inspiration porn makes us feel good! Can’t we just have this? Can’t we just have something that feels good?”

So I responded (again, essentially) “The thing we have been trying to tell you is that inspiration porn harms us. Please do not prioritize your fuzzy feelings over our actual well-being.”

The person never responded so the conversation ended there. I have no idea if what we were trying to say ever sank in. But think of it – this person was talking directly to people with disabilities, trying to explain how inspiration porn hurts us. Yet somehow, the very Realness of the people in those images and their lives never even seemed to occur to them. It was never anything more than fuzzy feelings. 

Which is exactly how the bird-taurs were acting.

Which certainly helps explain why I found them so utterly infuriating! Luckily, we were supposed to find them infuriating, so my feelings of rage were totally appropriate, if disproportionate. 

I’m really glad no one has ever made inspiration porn from an image of me. I can only imagine how much that would suck. 

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