Disability Day of Mourning 2019

Content/trigger warning: filicide, abuse mention

We’ve established that I’m not the most eloquent person out there. There are other members of Disabled Twitter and Disabled YouTube who have expressed what Day of Mourning is about better than I could. (Alice Wong, Lydia Brown, and Amythest Schaber in particular have said important and poignant things this DDoM.) But I try.

For those of you who are new to this blog, Disability Day of Mourning is a yearly vigil where members of the Disabled community gather to remember those Disabled people who were murdered by their carers. ASAN, the Autistic Self Advocacy Network, spearheaded the organization of these vigils. Other organizations like Not Dead Yet are often involved; the vigil I attended was set up by Autistics Against Curing Autism (AACA) and Quirky Citizens Alliance. At the vigils, opening remarks are read, and then the names of those lost to filicide are read. ASAN distributes an anti-filicide toolkit (found here) that includes other pieces that are often read at DDoM vigils. The point of DDoM is not only to mourn the dead, but also to acknowledge the role that ableism plays in filicide, particularly the ableist way the news media portrays the murderers who kill Disabled people as sympathetic.

I signed up to be a site coordinator for this year’s DDoM. After my escape from my abusive household, I was a ball of hypervigilance, flashbacks, and nightmares for the next month. I had to hand off the role of organizing my city’s DDoM to AACA. However, AACA was gracious enough to allow me to read opening remarks.

Below is the original piece that I read.

Changelings – Remarks for Disability Day of Mourning 2019

Good evening, everyone. My name is Amaranthe Rae Zinzani, and this is the first Disability Day of Mourning I have been able to attend in person. This is because I recently escaped from an abusive household. Said household contained people who rejected the idea that I was Autistic and also rejected the idea that I currently have PTSD from—among other things—their attempts to make me seem “normal”. Despite how badly I wanted to be here, it’s still extremely painful for me to think of why we are gathered here today, and I would like to extend my warmest thanks to all Disabled attendees for braving the horrible reality of the fact that we are here to remember people who were murdered for being like us; murdered by those who should have protected them, no less. To any abled attendees, I encourage you to listen with compassion and with a mind open to learning how to help the Disabled community make the changes to the world that will hopefully, one day, decrease the number of new names read at Day of Mourning to zero.

I haven’t given a speech like this before, so I decided to start with something familiar to me. I enjoy fantasy stories, so I would like to start by talking about changelings. There are days when I still am disappointed with myself for not realizing until well into my third decade of life that legends about changelings were about Disabled children and other children with socially unacceptable differences that could be blamed on the otherworldly. For those of you who are unfamiliar with changeling legends, the idea of the changeling is found in the folklore of several places in Europe, including the British Isles, Germany, Spain, and Scandinavia. In folklore, a changeling is a fairy or other eldritch creature left in place of a human child. In many of these stories, the method for forcing a changeling to return to their own people and bringing back the human child is killing the changeling.

So these stories are about justifying the murder of Disabled and other “undesirable” children, right? Why did that take me so long to understand? Internalized ableism is powerful and convincing, I know, but you see, there is a book that I read as a child so many times that the spine fell apart that should have clued me in. The book was The Moorchild by Eloise McGraw, published in 1996, picked up by me in 2000, and read again and again until at least 2008. The book The Moorchild is about a half-human, half-fairy called Moql who is forced to replace a human child because her human genetics mean she represents a threat to her people. Moql is literally a changeling, according to the legends: a fairy child left in place of a human child. So why should this literal interpretation of a changeling story have informed me of the true nature of changeling legends? The answer is relatively simple: the book was dedicated to me.

Well, the book was not dedicated to Amaranthe Rae Zinzani, but the dedication did make part of my brain jump up and down shouting with joy: the dedication read, “To all children who have ever felt different.” I still remember that the word “different” was set in italics. I would imagine that many other people here today would have identified with that dedication, too.

I read the book for the first time only a few years before I first began to suspect that I was Autistic, and it was about 13 years after I first read The Moorchild that I paid $2,000 out of pocket for someone with a few letters after their last name to confirm that yes, according to the insurance cookbook—sorry, I mean the DSM—I am Autistic. (If my word choice and tone of voice aren’t making it clear, I am deriding the fact that formal diagnosis is often seen as the only legitimate way to diagnose disabling conditions.) And it was still another few years after that, years after I wept tears of relief at the knowledge that the reason I had felt so “different”—in italics—was because I was Autistic, that it took a damn Tumblr post about the history of developmental disability to make me realize that changeling legends came about as a justification for filicide. Maybe it was because I didn’t want to believe that if my circumstances had been a little different, I would have been left to die of exposure or drowned…or thrown into a bonfire, the way the townsfolk threatened to do to Moql in The Moorchild.

While the year The Moorchild takes place is not explicitly stated, changelings are mentioned in historical records as early as the 1500s, with both Martin Luther and the brothers Grimm reporting what they claimed were real life changelings. In Ireland—where The Moorchild is implied to take place—there was at least one recorded killing of a non-speaking child, Michael Leahy, under the claim that the child was a changeling in 1826. This was approximately two hundred years ago.

There are days when it pains me more than I can express with mere words how little has changed. Abled people still fundamentally misunderstand us—they still see us as subhuman—but instead of blaming arcane creatures, they say it is our diagnoses that stole their real relatives and left inhuman nightmares in their stead. They still believe our lives are more tragic than our deaths. Only now they’re more direct about it. And their reprehensible actions are still met with sympathy. And their cries of “I had to do it” are amplified by the misinformation and pseudoscience and lies spread by organizations such as Autism Speaks.

Other carers of Disabled people see the outpouring of support received by those who commit filicide. They are bombarded by ableist ideas about how Disabled lives exist only as burdens on the carers, such as in the execrable play All in a Row, which premiered only last month. There are more deaths, more names mentioned only once or not at all, while their carers’ names trend on social media as other carers rush to defend them. The victims are forgotten by the news cycle…but not by their community. Reporters do not read the victims’ names, but the names will be read today. And we in the Disabled community will not rest until our lives are seen as worth what they truly are.

To paraphrase Mary Harris Jones, “Mourn the dead. Fight like hell for the living.”

Thank you.

Like I mentioned, this was the first DDoM I attended in person. It was a landmark moment for my internalized ableism. There are still times I feel like I’m not ~*~really~*~ Autistic. But last night, I felt like I was among my people. I wish it had been on a less…emotionally devastating occasion, but I’m glad I went. I hope I made my community proud with my reading.

I Have Another Project!

I started a YouTube series about my special interest in music! The first video is about my favorite songs of 2018, and it HAS CAPTIONS! I also talk about being Autistic a little bit, seeing as the series is called Rock, Roll, ‘n’ Stim.

I will be getting rid of my Mara Lee Patreon account soon and updating the one under my real name, Amaranthe Zinzani. After that, I will be giving Patrons early access to any videos in the future. Stay tuned.

How to Write an Autistic Character (Without Being an Ableist Shitpile)

Content/trigger warning: discussion of ableism

If you’re active in the Autistic community, you’ve probably heard of Puppetgate. If you haven’t heard of Puppetgate, the gist is that some asshole who thinks he’s an expert because he has served as a carer for Autistic people thought it was a brilliant idea to write a play (it’s called All in a Row) about paaaaaaaaaaaaarents institutionalizing their young Autistic son, Laurence, and have Laurence be represented by a terrifying grey-faced puppet.

Yes. Really.

Yes, if you look up “dehumanizing” in the dictionary, you might as well see a picture of that puppet.

Anyway, many denizens of Disabled Twitter have said more eloquently than I could have why Puppetgate is fucking gross (@crippledscholar especially, but also @vrolijk5, @slooterman, @challahwithjam, @ebthen, @AutisticMadeArt, and plenty of others have at least one incisive tweet about the issue), so my contribution is going to be a guide on how to write an Autistic character without being an ableist shitpile. If you’ve been reading my blog, there’s going to be some information you’ve seen me discuss before, but I wanted to frame the guide as something that can be shared, used, and understood by people who have no familiarity with my blog.

Here we go.

What autism is

Autism is a neurological/developmental disability. The Autistic community rarely discusses autism by calling it, well, autism, because it is not a disease but a lifelong neurodevelopmental difference. Autistic people exist not so much on a spectrum but a ball of wibbly-wobbly, stimmy-wimmy, speaking-nonspeaking stuff, and we have a massive variety of traits from the veritable constellation of traits that make us who we are. It is not something to be cured, but rather understood and celebrated.


What being Autistic feels like

In a nutshell, that meme “everything happens so much” is a pretty good descriptor. We often feel very, very intensely. This includes physically and emotionally. We are often very sensitive. Aside from that, our experiences are incredibly diverse.


Stimming

Ah, stimming. I love stimming. Stimming, short for “stimulation”, is the repetition of a sensory activity. Stimming can be auditory, visual, tactile, olfactory, gustatory, kinesthetic…pretty much related to any sense you can think of. It can be done as an expression of joy or stress, to help with focus, or just because we feel like it. The most well-known stims are hand-flapping and rocking back and forth. I was stimming by smelling my hair when I wrote this, because I use argan oil on my hair and it smells amazing. I have a lot of olfactory stims. I also stim by tapping my nails, rocking back and forth, flapping, spinning, smelling scents I find soothing or pleasant, singing, doing vocal warm-up techniques, running thin objects underneath my fingernails (often done with the chain of a necklace), chewing/biting stim toys, getting tight hugs or lying under a weighted blanket, and listening to certain songs on repeat. When writing an Autistic character, figure out what their favorite stims are and when they tend to stim. Some of us favor happy stimming, some only stim when we’re upset, some stim all the damn time…you have plenty of options.

When writing about how stimming feels, happy stimming feels exhilarating and freeing. It is a very consuming feeling; when happy stimming, we tend to be quite focused on it and how good it is making us feel. Stressed stimming can be self-injurious, like hitting oneself or walls, but pain isn’t usually on our radar at the time and may only be felt later. Hand-flapping and rocking are well-known stims because they are often seen under times of stress. Stressed stimming feels like a relief, or a release from something terrifyingly overwhelming. It can also be comforting; lying under a weighted blanket gives me a feeling of immense calm. And remember, stimming is repetitive. Whatever your character does to stim will be done a bunch of times!

Your Autistic character may carry something stimmy with them at all times. Stim jewelry and stim toys are becoming more and more popular. Since I love olfactory stimming, I always carry my three favorite perfumes with me.
Autistic special interests

Many of us have special interests. We aren’t very good at liking things casually. When we have a special interest, we eagerly devour any information we can find on the thing, and we seek the thing out and can focus on researching it or engaging in it for hours. Special interests can be pretty much anything. When writing an Autistic character, make sure you give them special interests that make sense for their personality. Don’t pick a stereotypical special interest like trains or calculus because that’s what you’ve seen in the media. If your Autistic character is really feminine, give her a special interest in ethically sourced makeup. If your Autistic character likes history, give them a special interest in a particular time period, like the Ottoman Empire. If your Autistic character is very attached to his dog, give him a special interest in dogs. We also almost never tire of talking about our special interests or engaging in them. If an Autistic character has a special interest in a movie, they could probably watch it three times in a row and love it every time.


Meltdowns/Shutdowns

Look, meltdowns suck. But they are a normal part of being Autistic in a world that does not accommodate us and as such triggers meltdowns. A meltdown is, essentially, a fight-or-flight response. During a meltdown, the brain behaves as if the Autistic person is in mortal peril. During a meltdown, you feel like you can’t breathe and that the world is closing in on you, and everything around you is just too much to handle and you just Can’t. During meltdowns, an Autistic character will probably lose the ability to speak and may cry or scream. Meltdowns are infamous for being self-injurious thanks to terrible parents who think it’s okay to film meltdowns and post them online, but not all meltdowns are self-injurious. If they are, the self-injury may manifest as striking one’s head, body, or fists against a wall or by hitting oneself. Meltdowns will pass after the Autistic person has gotten all the stress out of their system, often leaving the person exhausted. Some of us feel really sore after meltdowns even if we weren’t self-injurious. Sometimes instead of meltdowns, an Autistic person will have a shutdown, which consists of the brain basically switching itself off to avoid having to deal with whatever caused the shutdown. A shutdown feels like a “mute” button has been hit on a giant remote that controls the world.

An important part of writing meltdowns is to know why they happen. Allistic people tend to think that meltdowns are ~mysterious and have no cause, but really they don’t bother to understand our stressors. An Autistic person will not have a meltdown in order to get what they want, like a tantrum; something stressful will set off the meltdown. Meltdowns are often caused by sudden startling sensory input like a motorcycle revving or fireworks. Sometimes they are caused by something small in a long series of stressors; for example, if an Autistic person is tired and hungry and has been away from home a long time, they may go to a restaurant for dinner and the thing that pushes them into a meltdown is the restaurant being closed. I once had a meltdown because I do badly in the heat and had to be out in it for too long.

Another important thing about writing meltdowns is that they are way worse for the person having the meltdown than anyone who might be around. Writing the meltdown like it’s something terrifying to the bystanders and ignoring the Autistic person’s experience is ableist. Don’t do it.
Speaking

Some Autistic people are non-speaking (the preferred term is non-speaking, not non-verbal). Some Autistic people are hyperlexic chatterboxes. And everything in between exists too. Some hyperlexic Autistic people lose the ability to speak when under high levels of stress. Many non-speaking Autistic people use assistive technology like AAC communication boards or iPads in order to communicate through words. Some non-speaking Autistic people can sign. Many non-speaking Autistic people are capable of mentally forming words, but there is a disconnect between those words and being able to voice them. For me, ordinarily being able to speak and losing the ability to speak due to stress feels like a connection between my mouth and my brain has been severed. I may repeat words or stress-stim while I try to process the words I am attempting to say, or I may go completely silent and have to sign or write/type.

Scripts are key to Autistic communication. We learn to navigate social situations by figuring out (or being taught by friends) which scripts are appropriate for which situations. When Autistic people have trouble with social situations, it is often because we don’t have a script for the situation or because we don’t know which script to pick. I like to describe my social awkwardness as “error 404: script not found”. Use of scripts means your Autistic character may often use the exact same words in similar situations, especially when telling stories of something that happened to them or responding to common social situations like accepting a gift or being invited to a social gathering.

Your Autistic character may be able to speak all the time, be entirely non-speaking, or only be able to speak when not under stress. Keep in mind the stressors listed above when trying to figure out what might cause your Autistic character to stop being able to speak. On the other hand, Autistic chatterboxes often have good vocabularies and will love to talk endlessly about their special interests (infodumping).
Empathy

Autistic people supposedly have low empathy. However, there isn’t just one type of empathy. The type of empathy Autistic people most often struggle with is called cognitive empathy. Cognitive empathy is the ability to understand other people’s perspectives, mental states, or motivations, and to be able to intuit what another person would think in a certain situation. An Autistic character may often make mistakes when trying to figure out what someone else is thinking or why they are doing what they’re doing, and may be confused at other people’s behavior or logic.

Affective empathy is the kind of empathy Autistic people often don’t have according to harmful stereotypes. Affective empathy is the ability to sense and/or understand other people’s emotions. We supposedly don’t have good affective empathy because while we may be able to understand that someone is feeling a certain way, we often don’t have the necessary scripts to respond to the other person’s feelings. Many Autistic people are hyperempathic for affective empathy and take on others’ feelings as their own; this gets very overwhelming. So an Autistic character might be able to sense other peoples’ distress and want to help but not be able to, or be able to sense someone else’s frustration but not know what to say to make the person feel better, etc.

Some Autistic people do indeed have low affective empathy. This trait is frequently demonized. If you do write any neurodivergent character with low affective empathy, be extremely careful you are not inadvertently making them look evil or wrong because of their difficulty reading and understanding people’s emotions. A good example of a character with low affective empathy written well is Rose Quartz from Steven Universe.
Eye contact

Autistic people are like cats in that we feel threatened by eye contact. We’re not trying to be rude when we don’t make eye contact; it upsets us. Your Autistic character may not care whether or not people know they aren’t making eye contact or may fake by looking at the person’s eyebrows (like I do) or looking in the general direction of the person’s face and looking into the middle distance. Your Autistic character may be unaware of what color eyes people have because of this.


Other

Many Autistic people have auditory processing disorder, sensory processing disorder, echolalia, prosopagnosia, elopement, dermatillomania, and/or trichotillomania. Auditory processing disorder usually involves not being able to parse the sounds in words into said words and not being able to distinguish background noise from something right near you. It often means having really sensitive ears and being easily startled by loud noises (hi).

Sensory processing disorder is very common in Autistic people and involves sensory input not being adequately processed; usually not fast enough. Sensory processing disorder often presents itself by being unable to tolerate certain textures (especially in food!), noises, or grooming products. SPD is why a lot of Autistic people have trouble grooming ourselves. (My SPD acts up when my skin produces a lot of oil, which means showers are a wonderful relief from sensory hell for me, but I’m weird.)

Echolalia is key to how a lot of Autistic people think. It often involves repeating words that we have just heard, but often we retain phrases or words we hear that appeal to us and we will repeat them. Sometimes we repeat them as part of scripts, and sometimes we repeat them because it is fun. Echolalia is an imitative behavior, meaning we get these things we like to vocalize from other places. This can be books, movies, other people, songs, whatever; when I’m stressed, my echolalia kicks in and I speak mostly in movie and song quotes. (So echolalia can also become part of scripts.) Your Autistic character may have certain sources of echolalia that they like, such as people who they respect, or they may get the stuff they repeat from varying sources.

Prosopagnosia is also called face blindness. Autistic people with prosopagnosia are, in essence, crap with faces. This can mean just bad at reading facial expressions, completely unable to distinguish different faces, and everything in between. Having prosopagnosia often feels like seeing faces as disorganized collections of features instead of faces as a whole.

Elopement is when an Autistic person feels overwhelmed or threatened and leaves a situation. This often involves leaving a house, but can also be running from a social situation. Allistics like to call this behavior ~mysterious as well, but elopement is caused by stress. When we want out because of a sensory issue or because we don’t have a script for something or whatever, we may feel threatened, and we get out. It’s that simple. Your Autistic character will not elope for the hell of it. They will run from something if they feel like they are in danger.

Dermatillomania and trichotillomania are similar. Dermatillomania is skin-picking and trichotillomania is hair-pulling. Both are often done as stress-stims, and most Autistic people who do them try to re-channel that harmful stim into a different stim. So if your Autistic character does either, they probably are doing it unintentionally but may try to actively do a different stim when they catch themselves doing one or the other. Important note: neither is usually done as deliberate self-harm.
Final notes

Be critical of yourself when writing an Autistic character. With every one of their traits, make sure you think “Why am I writing this?” and if the answer is “Because I’ve seen it often in the media”, reexamine your motivation. There are a lot of harmful stereotypes out there, many of them perpetuated by so-called charities like Autism Speaks. Common misinformation includes that meltdowns, elopement, and self-injury don’t have causes, stimming must be stopped, that Autistic traits must be suppressed, that there are more Autistic men than women or non-binary people, and that only children can be Autistic. If you believe any of those, read more books and blog posts by Autistic people before writing your character. Recommendations include the book Loud Hands by Julia Bascom, and the blogs Autistic Hoya by Lydia Brown and Non-Speaking Autistics Speaking by Amy Sequenzia. (Temple Grandin is a pro-ABA Aspie supremacist I do NOT recommend her work for research on how to write Autistic characters.)

In light of Puppetgate, I would think I wouldn’t even have to say this, but apparently I do: if you’re not Autistic, don’t write a non-human character as Autistic unless most or all of the characters in the story are not human. We’re already dehumanized enough. Don’t write an android as your only Autistic character on a starship full of humans, don’t make the lone lawful good orc in your fantasy realm your only Autistic character, and DEFINITELY don’t represent a human Autistic character with a fucking puppet (unless you’re the Muppets, because having puppet characters is kind of their thing).

Fire Theory

Content/trigger warning: abuse mention

Hey, guess what, everyone? I escaped domestic abuse! Yay! I’m free! I’m safe! I signed up to lead a Disability Day of Mourning vigil!

…I still have to put the apartment together and clean it, and find a new job!

But I also finally came up with an alternative to spoon theory. As useful as spoon theory can be, it can be somewhat cognitively inaccessible if you don’t know the story behind it. (The story can be found here.) So I wanted to come up with an alternative that is more of an extended metaphor for disability, and after months of reenacting Lin-Manuel Miranda’s “come on brain, think of things” vine, I think I finally have an idea: fire theory.

Imagine you’re a fire in a cozy fireplace in a cottage in the woods. Okay, the cottage in the woods isn’t necessary, but imagine you’re a fire. You need oxygen and firewood–fuel–to keep burning. Everything you do that day consumes some of your fuel. If you’re abled, then when you wake up in the morning, you’re a giant, roaring fire, and everything you do takes only a little fuel, so by the end of the day, you’re smaller, but maybe not totally diminished. If you’re Disabled, then maybe you start out as a smaller fire, and everything you do on a given day doesn’t take much fuel, but you have less to work with at the outset. Or maybe you start out as a giant, roaring fire, but certain tasks you have to perform take a lot more fuel than it would an abled person. Your exact fire situation will depend on what conditions are disabling you.

So far, fuel sounds pretty similar to spoons, right? They’re both measures of wherewithal, and abled people have more of those measures or use them differently from Disabled people. But something I’m not huge on with regard to spoon theory is that according to spoon theory, when you’re out of spoons, you’re done. You can’t do anything else for the day. But I have run out of spoons while hauling groceries on foot, and I couldn’t very well just collapse on the sidewalk, so I pressed on in violent denial of the reality of my condition and collapsed/had a meltdown/cried/all three after I got home and stuffed the perishables into the fridge. So I kind of broke spoon theory there.

Spoon theory also doesn’t really allow for replenishment of spoons—in its original iteration, anyway—whereas fire theory does. The key to running on empty or replenishing wherewithal with fire theory is the idea of the ember. When a fire has burned itself out, there might still be embers continuing to glow. Instead of “running on no spoons”, I’ve come to think of it as “down to an ember”. Embers can also be encouraged to become blazes again with more fuel; in the case of fire theory, you can be down to an ember but get back up to fire status with medication, rest, food, hydration, or whatever it is that replenishes you.

So, fire theory is fairly straightforward: fire is a metaphor for you, fuel is a metaphorical measurement of wherewithal (or ability to do things without being in too much pain, or energy, or whatever it is that fits you), and Disabled people metaphorically use fuel faster than abled people and/or have less to work with at the outset. Additionally, it is possible to still keep going while miserable or in pain or nonverbal or what have you, in which case the metaphor for this is being down to an ember. It is also possible to go from an ember to a blaze again if more metaphorical fuel can be provided.

Clear as mud?

Here are some suggestions for how to apply fire theory, or rather, fire theory equivalents of spoon theory vocabulary:

I’m a spoonie = I’m a fire elemental (I was really tempted to somehow make a reference to A Series of Unfortunate Events and VFD, and have people say “I’m a volunteer”)
That’s going to use a lot of spoons = That’s going to use a lot of fuel
I’m out of spoons/I don’t have the spoons = The fire’s out/I’m down to ash
I’m out of spoons but somehow soldiering on = I’m down to an ember
I recouped some spoons = I’m back up to a fire/I chopped some more firewood/I recouped some fuel

Now I have a horrible cold and am going back to sleep.

Two Years Now…

Content/trigger warning: Death mention

Carrie Fisher left this mortal coil exactly two years ago. I still miss her so much. It still seems unfair that she’s gone.

I’m currently doing something she would be proud of, I think. Something that will improve my mental health and make it much easier for me to engage in activism. Stay tuned.

Hermeneutical Injustice

Content/trigger warning: discussion of ableism, cursing (these are probably true for most entries…), mention of Autism $peaks, eugenics, ABA

Internalized ableism is sadly common. I see it all the time, from Disabled people who choose to use terms like “person with a disability” and “the disabled” to those who are pro-eugenics. I’m also queer, and I see internalized ableism far more often than I see internalized queermisia. I’m also female, and I see internalized ableism far more often than I see internalized misogyny (in general; if we’re talking specifically about white women, that’s another story). I’ve often wondered why so many Disabled people so staunchly advocate against their own rights and don’t understand that their lives have as much value as those of abled people. As much as I want to boost the voices of other Disabled people, when Disabled people are advocating against disability justice…well, I struggle with that. I can’t say their voices don’t matter, but when another Autistic person says “figuring out the genetic causes of autism is important so people like me can be eugenically eliminated”, I sure as shit don’t want abled people hearing that and thinking that Autistic people universally want to stop existing.

I thought about how difficult it was for me to find information from Disabled self-advocates and how long it was after my various diagnoses that I started learning about disability justice. I started to wonder if so many Disabled people have such terrifying internalized ableism because they don’t have access to information about disability justice. Not only do they not have information about disability justice, what they do have is an omnipresent avalanche of ableist bullshit. I mean, hell, when a newly diagnosed Autistic person googles “autism”, they’ll probably find fucking Autism $peaks. (I’ve discussed before why that organization is a hate group). They’ll probably also find information on conversion therapy based on the mistaken idea that autism is a behavioral disability, not a cognitive one, and aimed at making Autistic people more palatable to the allistic people in our lives at the cost of our mental health and autonomy. (This “therapy” is called applied behavior analysis, or ABA, and I’ll do another entry on why it’s harmful later.) Ableist disinformation is everyfuckingwhere because ableism is built into society, and I started thinking that the fact that Disabled people internalize that disinformation is a manifestation of ableism.

As it turns out, I might be onto something. A philosopher named Miranda Fricker defined the term “hermeneutical injustice” as follows:

“In cases of hermeneutical injustice, we harm people by obscuring aspects of their own experience. Our dominant schemas–our assumptions, what we take as common ground–about a particular group can make it difficult for members of that group to understand or articulate their own experiences qua members of that group.”

That’s in academic-ese, so let me try to translate. Hermeneutical injustice is when society keeps important information about group X from the people in group X and instead feeds them bullshit, making it difficult or impossible for members of group X to understand or talk about being X. Doesn’t that sound like what I was talking about a few paragraphs ago?

So when I see Disabled people with deeply ingrained internalized ableism, I try to remember that they probably haven’t had the access to the resources I do, and I try to share my resources. I’m still working out how to discuss hermeneutical injustice with the people it affects. Nobody wants to be told “Your ideas are wrong because you’ve been fed bullshit”, even though that is frequently a logical response to statements like “I can’t be ableist; I have a disability!”.

How do we address hermeneutical injustice, then? I try to make disability justice resources more available, and I write this blog, but hermeneutical injustice comes from societal oppression. The best way to confront hermeneutical injustice is to dismantle the oppressive structures that perpetuate abled supremacy (and white supremacy, patriarchy, etc.; they’re all interrelated. Intersectionality may be an entry for another day…or multiple entries. Hmm. I’ll get back to you on that). Yeah, yeah, I know. Tall order. But the alternative is for Disabled people to continue believing our lives don’t matter. And that’s unacceptable.

Several Things…

Content/trigger warning: discussion of ableism, including common emotional abuse techniques, cursing (do I always warn for cursing? I should, seeing as I curse like I just discovered the words)

Hey! Guess who did NaNoWriMo and didn’t blog for a whole month because she was busy trying to hit 50k? This lady! (I did finish NaNo, though.)

To get back into the swing of things, this seemed like the perfect blog entry to talk about a few small things that don’t really need an entire standard Mara length blog entry to cover. This is going to be a list-heavy entry: I’m going to talk about common lines of advice that are actually ableist (and some are just dickweed things to say), laterally ableist behaviors that I often see, and why it’s ableist to mock “weird” triggers. (The last one will be a list because I’m going to share some of my more “weird” CPTSD triggers.) That said, let’s get started.

“Helpful” advice that’s ableist:

  • “You can overcome anything!” The whole idea of “overcoming” disability is ableist because it represents a fundamental misunderstanding of how disability works. If someone can do something that another Disabled person with the same condition can’t do, the first person didn’t “overcome” anything, they just experience the condition differently. Also, sometimes Disabled people can’t do things because of our disabilities. That’s why it’s called a DISability. Sometimes we can’t do shit. Deal with it. And by “deal with it” I mean “don’t tell us that we can do something we actually can’t, because that’s tremendously invalidating”.
  • “You HAVE to try yoga/dieting/exercise/acai suppositories/etc.” This one is rather conditional. Unsolicited advice is usually a No. Disability Etiquette 101: if a Disabled person is venting to you about debilitating symptoms, do not offer suggestions on how to fix the symptom unless asked, especially if you don’t know the person that well. You don’t know what the person has tried and if your potential solution is accessible to them. If someone is asking you what you did to address a particular symptom or if you have any ideas, go ahead and share away, but if someone is venting about their disability-related traits or symptoms, don’t try to fix them. Yes, even if XYZ thing worked on your same traits or symptoms. (If you really feel strongly about a suggestion, you can ask if the person talking to you is interested in hearing suggestions.)
  • “Don’t let it get to you.” This one is invalidating in general, but it’s especially shitty for neurodivergent people who are highly emotionally sensitive. Can people control how they react to feeling like shit? Sure, sometimes. But it’s a rare person indeed who can simply decide to not feel like shit in response to something that makes them feel like shit. Even if someone is ND and their condition makes them sensitive to something that makes them feel like shit that doesn’t make you feel like shit, that doesn’t mean that the ND person is doing feelings wrong or shouldn’t “let it get to them”. Asking people how you can help them feel better because you want them to feel better is great. Telling people to change their innate emotional responses, especially if those responses are due to neurodivergence, is an asshole move. Policing people’s more specific emotional symptoms (e.g. “it’s not that scary” in response to anxiety”) is also an asshole move.
  • “Be grateful it’s not worse.”/”You don’t have it that bad.” Unless you are the single most unlucky motherfucker in the world, someone will have it worse,  but suffering isn’t a contest. Telling someone to be grateful for their suffering not being worse is invalidating. Fuck this one. Don’t do it.

Common forms of lateral ableism that I’ve seen is up next. Some of these have been discussed on this blog before, but I wanted to compile them. The following are sucky things that shouldn’t happen:

  • Physically Disabled people insisting that their physical disability doesn’t mean they are ID/DD/LD and implying that there’s something wrong with being ID/DD/LD. If you want to clear up someone’s misconceptions about your disability, great! That’s fine! Just make sure you’re not implying that you’re a “good” Disabled person because you’re not like one of those other gross Disabled people with a condition you’re throwing under the bus.
  • Autistic people insisting that autism isn’t a mental illness and implying there’s something wrong with being mentally ill. Okay, yes, I will acknowledge that being mentally ill can be a towering goblet of suck, but again, this can fall into the acting like you’re a “good” Disabled person because you don’t have [insert other disability here].
  • Physically abled MI people describing their mental illnesses as “cr*ppling”. No, you don’t get to use a slur that isn’t yours to describe your brain’s bullshit. There are so many other words to describe brain bullshit. “Debilitating” is a good one.
  • Neurodivergent people saying that physically Disabled people don’t get gaslit about how their disabilities aren’t real, or don’t experience medical ableism, or generally have it better than neurodivergent people. NO. NO NO NO NO NO. Bad Oppression Olympics participant. Stop it.
  • People with mood disorders insisting they aren’t scary, dangerous, or likely to be violent like people with PDs or psychotic people. And we’re back to throwing other disabilities under the bus in order to make oneself look better.
  • People with abuse-related PTSD blaming their abusers’ harmful behavior on their abusers being mentally ill. Armchair diagnosing emotional abusers with cluster B disorders has become especially trendy these days, and abuse survivors have blamed their abusers’ behavior on addiction for ages now.
  • People with BPD acting like they’re the “good” cluster B illness that isn’t selfish or abusive or whatever. Man, throwing other disabilities under the bus is really popular on this list.

And finally, something a little different. It’s all too common to mock mental illness triggers, especially PTSD triggers, these days. PTSD is a constellation of symptoms that result from the brain dealing with trauma, and one of the things brains try to do in response to trauma is keep a person from experiencing trauma again. The devastating effects of flashbacks, hypervigilance, and other PTSD symptoms in response to triggers are the brain trying way too hard to tell the brain’s owner “SHIT SHIT SHIT YOU’RE IN DANGER RUN AWAY”. (This is all very scientific, I know.) Because of this, literally anything that was involved in the trauma may become a trigger. A smell, a sound, a word, anything. I was abused for over a decade, so my CPTSD has had plenty of opportunities to pick up triggers that some might think are silly but will grab me by the collar and fling me back in time to relive the abuse if I hear them. For example, here are some of my more “ridiculous” triggers:

  • The sound of heavy/running footfalls
  • British spellings
  • The phrases “this little [noun]”, “you’re too sensitive”, “black pit”, “I don’t believe you”, and “capitalist values”
  • The word “stroke”
  • The words “at all” being used at the end of a sentence
  • The song “Carousel” by SJ Tucker
  • The taste of hazelnut coffee creamer
  • My given name spoken out loud

Yep. My given name is a trigger. Last night someone called me by it and I couldn’t stop shaking for hours. Why yes, that is fucking annoying.

I think that’s all I have for now. Oh, right! I’m also working on setting up a Facebook page. I feel like I’m not all that well suited to Twitter. I’m going to stay on Twitter, but Mara Lee is also getting a Facebook page soon. I’ll share the link when it’s ready.

She Would Have Been 62 Today

Dear Carrie,

Happy birthday. I hope wherever you are now, you have some awareness of how much your life mattered to so many people and that the world is worse off without you. And I hope that there are no saneist assholes there, even though if there were, you’d be giving them hell (no pun intended).

I’m sorry I haven’t been doing my part to dismantle ableism with snark in your honor very well this year. I’ll try to do better from now on. I want to live a life that you would have been proud of.

Love,
Mara

Lesser Known Autistic Traits

GODS DAMN it has been way too long since I’ve blogged. And my first entry after my long absence is on…a thing I have not mentioned in any of my previous lists of topics I want to tackle. Yay!

I talk about autism a lot, seeing as I’m Autistic as all fuck, but today I want to talk about some lesser known Autistic traits and tendencies. I’ve discussed a few well-known traits such as meltdowns, having special interests, difficulties with verbal communication, and poor executive function, but I want to list and describe some of the lesser known Autistic traits (and some commonly co-occurring disabilities) because, well, they’re lesser known and they shouldn’t be. The more information about autism is out there, the more diagnoses can be made. Oh, and many of these traits are more commonly missed by professionals when they’re seen in cis women. (HOWEVER, that does not mean that they are exclusive to cis women, or women in general. I’m merely remarking on the incompetence of people who are supposedly qualified to diagnose autism.)

I’m going to start by coining a term: chronagnosia. I will later mention prosopagnosia (face blindness), so I used the Greek root for “time” with “agnosia” (inability to interpret sensory information and as such recognize things) to get “chronagnosia”, or “time blindness”. Chronagnosia is, essentially, being shit with time. To put it slightly more eloquently, chronagnosia is inability to conceptualize time. My chronagnosia manifests as a near-complete inability to tell how long a particular event or activity has taken.

Some other “atypical autism” traits are:

  • Poor sense of self. Some Autistic people have personalities that shift, sometimes dramatically, depending on who they’re around. These people may also be highly susceptible to taking on personality traits of their friends and families. (Am I like that because I’m Autistic? Is it because of trauma? Is it because I’m borderline? Nobody knowwwwwwws!)
  • Strong or overdeveloped sense of justice. Uh…if you read my blog at all, you’ll probably have a sense for what this looks like. This also can manifest in a fiery, burning hatred for being misunderstood.
  • High emotional sensitivity. This can manifest by crying, yelling, or even having meltdowns over wounded feelings. No, this isn’t something you can just decide to not feel, and people who think you can simply turn this trait off need to be punched.
  • Being neurogender or gendervague. “Neurogender” refers to someone’s gender being powerfully affected or influenced by their neurodivergence; “gendervague” is a label used by people whose neurodivergence means that they can’t conceptualize gender.
  • Difficulty spending time on personal “grooming” tasks such as showering, combing hair, and changing into clean clothes. This is often due to poor executive function or sensory issues.
  • Extreme intellectual capability in some areas, but great difficulty with the social aspects of school. To put it another way, many Autistic people have tried college and couldn’t handle the non-academic aspects of it, and may have one or many partial degrees.
  • Preferring the company of animals to people. https://www.youtube.com/watch?v=0THbJgMW6NY
  • Awkwardness around people who are of romantic and/or sexual interest. Also, not knowing how to flirt or recognize flirting. (This one can sometimes change with age and experience.)
  • Difficulty enjoying sex due to sensory issues.
  • Being significantly better at socializing with small groups than large ones, but still with a tendency to shut down, withdraw, or cry when confronted with large groups. Alternatively, some Autistic people may have developed noteworthy acting skills as a survival mechanism and can appear at ease in social situations despite actually feeling stressed or uncomfortable. (This is me. This is me in spades.)
  • Often being perceived to be cold, withdrawn, or unfriendly, but with the tendency to become animated and almost joyful at the opportunity to talk about a special interest.

Commonly co-occurring disabilities:

  • Anxiety disorders. If not diagnosable GAD or other anxiety disorders, anxiety, fear, and paranoia are dominant emotions.
  • Depression or mood swings. If not diagnosable MDD or dysthymia, persistent sadness or muted/depressed mood is common in Autistic people. Probably because we’re constantly being bombarded with the message that we shouldn’t exist. That’d make anyone depressed.
  • Hyperlexia, which means learning to read early with accompanying difficulty using verbal language and/or with social interaction.
  • Prosopagnosia. Also called face blindness, this is the inability to recognize faces. I have a small degree of prosopagnosia; I can recognize people, but I commonly mix up people who look similar.
  • Expressive agnosia. This is the inability to recognize other people’s moods or read facial expressions.
  • Alexithymia. This is a term for the inability to understand or express emotions. To put it more bluntly, it’s being crap at knowing what you’re feeling.
  • Sensory sensitivities and/or sensory processing disorder (SPD). This is usually broadly defined as the sensory signals received by the brain are not processed into an appropriate response. For Autistic people, though, this usually means that certain sensory inputs are intolerable.
  • Auditory processing disorder (APD). This is similar to SPD, except the sensory signals that aren’t processed correctly are related to sound. A brief and common story about APD follows: “Hey, can you pass me the remote control?” “What?” “Can you pass me—“ “Here’s the remote.”
  • Difficulty understanding verbal instructions. This one is fairly self-explanatory (and can be related to the aforementioned APD).
  • ADHD and autism have a lot in common, but some traits that are more common with ADHD and less common autism include impulsivity, inability to sit still, distractibility, and forgetfulness. While one can be mistaken for the other, they also commonly co-occur.
  • PTSD, CPTSD, or other trauma-related disorders. We’re at high risk for being abused. We’re also often highly sensitive. Trauma-related disorders may result.
  • Gastrointestinal issues. I know, I know, there’s a lot of bullshit about how “bad bacteria” or “toxins” in the gut cause autism, and it truly is grade-A bullshit, but many Autistic people have irritable bowel syndrome, ulcers, acid reflux, etc.

I………………………………………..think that’s all for now? I have a feeling I’ll come back and add things to this after I post it.