Fire Theory and My Grocery Shopping Experience

Content/trigger warning: cursing

You need to know what fire theory is to fully understand this entry, so here’s my entry on fire theory: https://thisisforyoucarrie.blog/2019/02/01/fire-theory/

I fucking hate grocery shopping.

First of all, I’m tiny and have a lot of trouble maneuvering grocery carts. Second, the grocery store is too peopley. Not only are they making people noise, the people in grocery stores are unpredictable. Are they going to stop and pick up some olive oil right in front of me and I’ll have to halt suddenly and pray I don’t run into them, or go around them and maybe hit someone else? Third, there are sometimes smells that are sensory nopes for me, Fourth, with me worrying so much about the people, I often can’t find the items I need and end up going home without everything on my list.

Last night I went grocery shopping because I needed toilet paper and cat litter, and I couldn’t wait for Peapod. I can’t drive, so I took my personal shopping cart with a broken wheel that I can’t afford to replace and made the walk to the nearest grocery store about a mile away. I had a few other items on my  grocery list and wasn’t able to get all of them, but whatever; the problem was walking home.

I had a meltdown after the sixth time my heavy grocery cart with cat litter and cat food in it ran over my heel. Everyone in my zip code probably heard me screaming and crying. According to spoon theory, I would have been out of spoons after that meltdown. I was Done.

But I had to get home and carry my groceries up three flights of stairs.

So I did.

According to fire theory, after my meltdown, I was down to an ember; ostensibly unable to do anything but left with no choice, so I did the thing. I told myself I could have a chocolate donut if I got home, so my depleted ass walked home and hauled the groceries up the stairs and inhaled that donut. But after that, I changed into my pajamas and lay in bed crying for the rest of the night and wasn’t able to cook or shower even though I needed to do both. Spoon theory would hold that after I was out of spoons, I couldn’t have gotten home. But come hell or high water, I got my ass and the groceries and the rest of me home.

This is one of the reasons I favor fire theory. Fire theory explains how I got home; embers can be persuaded to burn under the right conditions, in this case the fact that lying on the sidewalk crying wasn’t an option.

I also think fire theory makes more sense as a metaphor and calling oneself a fire elemental is just cool sounding, but mostly I wanted to tell this story.
A less funny story is that I fell victim to a job scam. If you’re a Patron and have seen this a shitzillion times, I’m sorry, and if this is your first time hearing about this, please share my GoFundMe and donate if you can. https://www.gofundme.com/help-mara-lee-get-through-june

I’m also doing a fundraiser stream on YouTube. I did a short video on that. https://www.youtube.com/watch?v=jm5YKa6zrls&t=1s
I have actually decided to so the stream from 3 to 5, not 2 to 4.

Thanks to my Patrons! I have multiple Patrons now! These awesome people are Karina, Ace, Emily, Sean, and Hannah.

Identity-First Language and Why You Should Default to It

Content/trigger warning: cursing, discussion of ableism

I feel like other people (*cough* Autistic Hoya *cough*) have done this better than I can, but I’m going to try my hand at this: why “D/disabled” is preferable to “person with a disability”, i.e. why person-first language (PFL) is a load of crap and identity-first language (IFL) is more respectful. Note: this is in general. There are individuals who use person-first language, and—as far as I’ve heard—people with Down syndrome prefer, well, the phrasing I just used. I have also seen PFL being used for people with cancer.

So, why (in general) should you say “disabled” instead of “person with a disability”? Several reasons. One, the social model aspect of disability. I maintain that the social model of disability, which posits that disability exists because society is not set up to accommodate Disabled people, is flawed—even with all access barriers removed, my brain would still be trying to kill me, and it would still fuck seriously with my ability to do things—but the ablenormativity inherent in society does indeed disable Disabled people. The use of “person with a disability” instead of “disabled” ignores this crucial fact.

Two, “person with a disability” implies that disability can be separated from a person. Because of the social aspect of disability, this is impossible. This is especially true for Autistic people because our Autisticness informs so many aspects of our lives that it is impossible for autism to be separated from the person. Even allistic Disabled people, though, cannot be separated from their experiences of being Disabled by society and their bodies/brains. And you know what? “Disabled” is not a dirty word, and that is because disability does not reflect negatively on the person. Seeing disability as reflecting negatively on the Disabled person is ableism, full stop.

Three, “person with a disability” is a misguided attempt at making people see Disabled people’s humanity that is predicated on an ableist idea. If someone has to say “person with a disability” in order to remind themselves that a Disabled person is indeed a person, that’s rooted in ableism too deep to be fixed by an incorrect euphemism that is in and of itself ableist. PFL, instead of emphasizing a person’s humanity, plays into the aforementioned (point two) ableist concept of disability; if you have to separate disability from the person because “oooooh disability is BAD”, that’s ableism. (Remember how I said earlier, though, that PFL is preferred for people with cancer? Yeah, this is why. People saying that cancer is horrible are completely right.)

Look, words mean things and semantics have an effect on how people think. IFL recognizes the experiences and identity and humanity of Disabled people. PFL dehumanizes Disabled people. Which one would you rather use as a default? (If you say PFL, get the fuck off my blog.)

Thanks to my only patron, Karina! If you would like to be as cool as Karina and support me on Patreon, check out my Patreon at https://www.patreon.com/ARZinzani. If you’re only interested in supporting my blog, not my other two projects, I’ve now changed my Patreon setup so you can pledge per month, not per paid post.

May the 4th Be With You (2019); Acceptance vs. Awareness, Revisited

Content/trigger warning: abuse mention, cursing, slurs (censored)

Happy Star Wars Day!

Honestly, one of my favorite parts of Star Wars Day is that it’s in May, meaning that fucking April is over. (I should just call it Fucking April from now on. It’s no longer April. It’s Fucking April. Or Autism Hell Month.) Unfortunately, when I escaped domestic abuse back in January, I forgot to bring my glitter eye shadow with me. So I’m wearing a glittery shawl, glittery nail polish, glittery earrings, and eye shadow that has at least some glitter in it. And a shirt with Carrie Fisher’s signature on it.

Anyway, May. May is also Mental Health Awareness Month, which…yeah, I’m not big on that name. As I’ve mentioned on this blog before–specifically in regards to autism–“awareness” is not the best concept to use in pro-ND activism. So I’m going to use this entry to talk a little about the terminology surrounding Mental Health Awareness Month and similar concepts related to pro-ND activism.

In my acceptance vs. awareness entry, I said the following:

Needless to say, I don’t like awareness campaigns. This makes me nervous when I see awareness campaigns for mental illnesses. “Awareness”, to me, will always have the connotation of “be aware, these people are Other”. It matters quite a bit, though, who runs the campaigns. Autism $peaks’ flavor of “bewareness” is motivated by allistics who hold an inherently bigoted view of Autistic people. Many mental illness awareness campaigns are actually run by people with the illness. That makes a huge difference. I would still prefer to see acceptance campaigns because I don’t like the connotation of “awareness”, but that might be me.

Yeah, I don’t think it’s just me. “Awareness” isn’t enough. Mentally healthy people are aware of psychotic disorders and they still use “psychotic” to describe violent assholes. Mentally healthy people are aware of cluster B disorders and still use “n*rc*ss*st”, “p****path”, and “s****path” to describe abusers. Mentally healthy people are aware of PTSD and they still use “triggered” to mean “offended”. Mentally healthy people are aware of depression and they still don’t know not to call the police for “wellness checks” when a loved one is suicidal.

We have awareness. What we need now is acceptance. This is necessary in part because acceptance requires understanding. I’ve seen the pattern so many times of mentally healthy people claiming they support their mentally ill loved ones but freaking out and being unsupportive and straight up saneist as soon as their loved ones start showing symptoms. Acceptance means knowing that being mentally ill means having certain traits and symptoms and not being a dickweed when a person shows those traits or symptoms.

Of course, this means that mentally healthy people need to be educated about how mental illness actually works. That, to me, is what “awareness” campaigns should actually be; not just saying “whatever percent of people have X diagnosis” but saying “X diagnosis means [symptoms A, B, and C]” and “X diagnosis does not mean [saneist stereotypes D, E, and F]”. I’m not so naive that I think that all mentally healthy people are going to learn from acceptance campaigns and stop being saneist as soon as they learn the truth about mental illness, but I do think that acceptance campaigns would be a good place to start.

As long as I’m yammering about terms, I don’t like the term “mental health advocate”. A lot of people call Carrie that, but it doesn’t make sense to me. Most “mental health advocates” are actually mentally ill people who talk about the absence of mental health. Being Autistic, I like the term “self-advocate”, which we in the Autie community often use–hell, there’s an entire big Autistic justice organization called the Autistic Self-Advocacy Network–and I think “self-advocate” would make more sense than simply “advocate”. “Mental health advocates” don’t advocate for mental health so much as they self-advocate for a particular kind of disability justice: psychiatric disability/mental illness justice. So “mental illness self-advocate” or “psychiatric disability self-advocate” make more sense to me, because those terms seem to actually mean “mentally ill person who self-advocates for justice for mentally ill people”. If “mental illness advocates” can’t self-advocate because aren’t actually mentally ill, then…well, they probably need to shut up and pass the mic. I also like the idea of “[psychiatric] disability activist” as a term if “self-advocate” seems too, well, self-centered and not focused enough on fighting for justice for the mentally ill community.

Continuing to yammer about terms, I also said this in my last acceptance vs. awareness entry:

Side note: “stigma” is really a manifestation of neurotypicalism. It’s a system of oppression, not just an unfortunate opinion. That’s important to keep in mind.

Still true. Because of this, I don’t like it when people talk about “destigmatizing mental illness” or “mental illness stigma” without mentioning the larger context. Just saying “stigma” isn’t enough because it doesn’t get at the root of the problem. I’d prefer that people say “mental illness stigma as a result of saneism”. Talking about stigma is fine–it totally exists and is a real problem–but the reason why stigma exists is that society is set up to oppress mentally ill people and privilege mentally healthy people. The big picture is always important in social justice. And this includes acknowledging intersecting axes of oppression as well; there are some denizens of Disabled Twitter who I really admire, especially @autistichoya, who often talk about how white supremacy supports ableism and that there is no dismantling ableism without dismantling white supremacy. I really hope to feature a guest blogger on that topic one day. Speaking of passing the mic.

That’s all I have for today. May the Fourth be with you. Wear #glitterforCarrie and fight for justice for mentally ill people in her honor.

Thanks to my only Patreon supporter, Karina! To become as cool as Karina, please consider supporting my work on Patreon: My Patreon.

I Did an Activism for Autism Hell Month

Content/trigger warning: filicide, Autism $peaks mention, fucking April

I fucking hate April.

April drains the Autistic community. I keep hearing stories of burnout, depression, more frequent meltdowns and shutdowns, and completely shot executive function.

I feel that. I’ve been pretty damn useless this month.

But I did do something for April as a middle finger to Autism $peaks. I went to an open mic and sang a song in Katie McCarron’s memory, prefacing it with the story of her murder. My amazing fiancee—she proposed after my performance, and yes, I’m incandescently happy about that, and of course I said yes—filmed it. So here it is, with a transcript. Before the filming started, I introduced myself with my stage name, Valkyrja, which is Old Norse for “valkyrie”. Even before that, I asked if I could take the mic off the stand; the MC jokingly gave me a hard time and my Autistic ass thought he was being serious. Anyway, here’s the video and the transcript.

Transcript:

…and you can call me Valkyrie if you can’t flip the “r”, or if you aren’t interested in Old Norse, or whatever. And the song I have chosen to perform tonight is actually…[sigh] in memoriam, so I’d like to give a little context before I start, if that’s okay. I cannot see jack with these lights; I don’t know if I’m getting a nod, so I’m just going to go ahead.

Okay, I need you all to imagine something for me. I need you to imagine that you have a condition that causes you to perceive and interact with the world differently from most people. And yes, it’s certainly a disability, but it’s mostly so because of the way society treats you. Got that so far? Okay. Now, I need you to imagine that a MASSIVE charity—supposedly—gets the director of the third Harry Potter movie to make a short film about what it’s like to live with this condition…and they don’t get anyone with the condition to be involved. What the fuck, right? They got the director of The Prisoner of fucking Azkaban to direct the thing and couldn’t get anyone with the condition to even be interviewed? What the hell, right?

Now…this is where it starts getting fucked up. Trigger warning for ableism and murder. So, I want you to imagine that a board member on the charity who does not have the condition says in front of her daughter who does, in this film, she wishes she could kill her daughter and then herself.

[Crowd “oooh”s]

But she can’t, because she has a normal child to take care of. Stay with me.

[Someone in crowd says “all right”]

Now imagine this film premieres. A woman who doesn’t have the condition but has a child who does sees it. Three days later, this woman murders her young daughter who has the condition. You’d make some connections in your head about this series of events, wouldn’t you?

THEY HAPPENED. The “charity” is Autism Speaks. The film is Autism Every Day, which premiered in 2006, and yes, they got Alfonso Cuaron, the director of Harry Potter and the Prisoner of Azkaban to direct, and yes, his name is fucking mud in the Autistic community right now. We hate that guy. And if you couldn’t tell by the way I couldn’t tell he [indicates MC, who was being an asshole earlier] was being an asshole, I’m Autistic as fuck.

So the young woman who was unfortunately murdered. Her name was Katie McCarron, and I would like to dedicate this performance of “We Are the Others” by Delain to her, may she rest in power.

[sigh] Okay, if I’m not gonna cry, I’m ready to sing.

I’m walking with Katie tonight,
She lives in the air that I breathe;
I can’t get it out of my mind
How you were left to bleed
Was it how you stim?
Or how you act?
I can’t believe
How she could act so violently,
Without regret,
But we will not forget

We are the others,
We are the cast outs,
We’re the outsiders
But you can’t hide us,
We are the others,
Black-eyed and battered,
You’re not out there on your own
If you feel mistreated,
Torn and cheated,
You’re not alone,
We are the others (we are the others)

As simple as air in your lungs
As simple as words on your lips
And no one should take that away
No one should argue this
Now with our heads up high
We’ll carry on,
And carry out,
And we won’t let them get us down,
Wear us out,
‘Cause we are not alone

We are the others,
We are the cast outs,
We’re the outsiders
But you can’t hide us,
We are the others,
Black-eyed and battered,
You’re not out there on your own
If you feel mistreated,
Torn and cheated,
You’re not alone,
We are the others (we are the others)

Normal is not the norm,
It’s just a uniform
(We are the others)
Forget about the norm,
(We’re the outsiders)
Take off your uniform,
(We are the others)
We are all beautiful,
(We are the others)

We are the others,
We are the cast outs,
We’re the outsiders
But you can’t hide us,
We are the others,
Black-eyed and battered,
You’re not out there on your own
If you feel mistreated,
Torn and cheated,
You’re not alone,
We are the others (we are the others)
We are the others (we are the others)
We are the others

 

Many thanks to my sole patron, Karina! If you would like to be as awesome as Karina, enjoy my work, and would like to support me, please consider becoming a patron of mine on Patreon: https://www.patreon.com/ARZinzani

Misogynableism

Content/trigger warning: misogynableism (of course), cisheterosexism, exorsexism, violent ableism, sexual assault, ableist slurs, cursing

A while ago, I wrote an entry on emotional sensitivity and neurotypicalism. It contained the following quote:

“Anyway, let me give an example. Well, an intersectional example. ‘Hysteria’ used to be a mental illness. Women were actually diagnosed as ‘hysterical’ for, well, having strong feelings. Specifically, these feelings included anxiety, irritability, and nervousness. Oh, and sexually forward behavior. The term ‘hysteria’ was used because those dishing out the diagnosis literally believed that having a uterus caused the ‘mental illness’, and hysterectomies were sometimes carried out as treatment. (I’m mostly referring to what was happening to women in England and the States during the industrial era.) In any case, to this day, women are referred to as ‘hysterical’ when we are upset in order to delegitimize our feelings. This is an example of misogynableism: the intersection between misogyny and ableism. The use of the insult ‘hysteria’ is meant to undercut a woman’s experiences by insinuating that she is mentally ill, therefore her experiences and feelings about them can be ignored.”

Of course, there are women without uteruses and people with uteruses who are not women, but the Victorian-era white English and Statesians didn’t know that, and I stand by the assessment that “hysterical” is a misogynableist term. And I decided to do an entry on misogynableism.

If you’ve ever heard the phrase “don’t stick your dick in crazy”—with all its cisheterosexist assumptions intact—you’ve been exposed to misogynableism. No one ever says—again, with the cisheterosexist assumptions—“don’t let crazy stick their dick in you”. No, the big, scary problem is that the woman might be mentally ill.

The cisheterosexism in that example is starting to make me feel ill, so let’s move on to another example: the “hot, sane, single” meme. I had the misfortune of having to Google “hot, sane, single” for this entry as research, and DAMN did I find some doozies. Quotes from the execrable Tucker Max’s books. Reddit threads (naturally). YouTube videos. More traditional meme images. The idea of “hot, sane, single” is…ah hell this one’s heterosexist too. Why does the world suck? (Rhetorical question.) Anyway, the idea of “hot, sane, single” is that, according to misogynableist straight men, there is a problem among women that they can only be two of that trifecta. So yes, this is misogynist as fuck, and the fact that “sane” is one of the desirable traits makes it misogynableist.

A third example is a nerdy one, so bear with me. I play World of Warcraft. There’s a character in WoW called Jaina Proudmoore, and she was one of the few leaders in the game who was a known peacemonger, despite her interpersonal relationships being something of a Trauma Conga Line. And then her home—her entire fucking island—was destroyed. Horribly. And she experienced severe trauma from the event to the degree that her previously blonde hair turned white. Understandably, she decided to renounce her peaceful ways. She performed several morally questionable (at best) actions that were obvious to me as stemming from untreated—and, sadly, because Blizzard can’t write WoW women, yes I went there—uncontrolled (as in the character herself seemed to be making no attempt to rein in destructive impulses) PTSD. Rage at the source (or perceived source) of trauma is a lesser known PTSD symptom, but boy fucking howdy is it a symptom. Not to mention any actual character development of Jaina’s is ignored in the writing, which focuses only on her rage at her enemies, i.e., her PTSD symptoms.

Anyway, one of the quest rewards one can get in WoW is a picture of Jaina Proudmoore with blonde hair, and the description of it is “before she went crazy”. First of all, Blizz, you were the ones who wrote Jaina’s behavior, so fuck you for insulting her acting the way you decided to portray her. The portrayal itself is pretty misogynableist; using a female character as a prop to make players of one faction believe that the other faction is bad, all while calling obvious PTSD a saneist slur. (Yes, other WoW players, I know I simplified Jaina’s story, but…come on, you know WoW lore. I had to.)

The next example is a terrifying and depressing one, so hold on to your asses. Disabled women are twice as likely to be abused—sexually and otherwise—than their abled counterparts. And while Disabled people overall are three times more likely than abled people to be sexually assaulted at least once, the rate at which Disabled women are sexually assaulted is 83%. You read that right. Eighty-three percent of Disabled women will experience at least one sexual assault in their lifetime. If you want a direct comparison between men and women (I know, I know, exorsexist, but I couldn’t find stats on sexual assault of Disabled nonbinary people), 80% of ID/DD women will experience one sexual assault in their lifetime, compared to 30% of ID/DD men. Oh, right, source.

I’m super low on fuel right now, but I also want to mention fetishization of mentally ill women. “Why are the hot ones always crazy?”. Weird and creepy bullshit about how maybe you’re not supposed to stick your dick in crazy, but the crazy girls are better in bed. Recent depictions of Harley Quinn, especially in Suicide Squad. I…uh…there are probably more. Can’t think of any right now, but the next time you see one, think about those sexual assault statistics.

Of course, none of this even touches the intersections with queerness, race, religion, class, and more, but I decided to write about–or at least, start with–two axes I was most familiar with. You bet your ass I could write about how being a queer woman intersects with ableism. And intersections really need to be discussed more, because there’s no dismantling ableism without dismantling white supremacy, heteronormativity, capitalism, etc. Perhaps more on that later; I’m hoping I can get some guest bloggers who experience oppression that I don’t to help me with that.

Oh, right, and I have a Patreon now! https://www.patreon.com/ARZinzani If you’re learning from my blog, please consider supporting me. You’ll even get to vote on what other entries I write or, at higher tiers, request topics for me to write about.

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.