Self-Diagnosis Is Valid, Godsdammit

Content/trigger warning: COVID-19, sick pet, murder, violent ableism, discussion of several axes of marginalization, cursing

I’m tired.

I’m tired of seeing the most vulnerable people in American society die of COVID-19 in terrifying numbers.

I’m tired of worrying about my emotional support cat, who has a thoracic mass pressing on her heart in addition to a diagnosis of mammary cancer. (I need help with transportation to and from the only vet in the metropolitan area willing to do a surgical biopsy and help with the surgery itself. Please share if you can’t donate: https://www.gofundme.com/f/help-b039elanna-beat-lung-cancer).

I’m tired of learning that yet another Autistic person has been murdered by their carer and thinking “that could have been me” (may Alejandro Ripley’s memory be a blessing).So you’d think that being tired of seeing ableist bullshit on Twitter wouldn’t be what I’m writing about, but it’s relevant, I promise. Not only is the topic I’m covering today currently a popular point of contention on Twitter, but it’s relevant because non-essential healthcare providers’ appointments aren’t happening due to the pandemic. So new professional diagnoses aren’t happening. It seems like a good time to talk about self-diagnosing with disabling conditions and how self-diagnosis is valid.

Let’s get one important thing out of the way first: being anti–self-diagnosis is ableist. Let’s get a second, even more important thing out of the way: anti–self-diagnosis is not only ableist, it’s classist, sexist, racist, transmisic, and probably other -isms/-misias that I’m forgetting. Where am I going with this?

Barriers to access.

Being professionally diagnosed is a privilege. In order to be professionally diagnosed, the following needs to happen:

  • You have parents who support your pursuit of a diagnosis or are in a position to be diagnosed without your parents’ involvement
  • There needs to be enough money for diagnostic procedures (and for a neuropsych eval, that was over $2k out of pocket when I paid for mine in 2014)
  • A healthcare professional willing to perform the diagnostic procedure(s) has to be available
  • Either the healthcare professional needs to not be biased toward misdiagnosis/denying diagnosis on the basis of gender, assigned sex at birth, transness, race, ethnicity, previous diagnosis/diagnoses, and probably other conditions that I’m forgetting or you need to be a white zedcishet male with no previous diagnoses and probably other privileges that I’m forgetting

So not only does it require a fuckton of privilege to obtain a professional diagnosis, there can be advantages to being professionally diagnosed. I’ve already talked about “scary” mental illnesses here (https://thisisforyoucarrie.blog/2017/06/24/scary-mental-illnesses/), and while being professionally diagnosed can be a path to access, accommodations, treatment, etc., being professionally diagnosed with a “scary” mental illness can also present barriers. I’ve had multiple psych professionals refuse to see me because my issues were too “severe” and/or because cluster B disorders like BPD are sometimes seen as untreatable. (Don’t @ me about DBT; I said sometimes.) Also, there are likely disadvantages to being diagnosed with conditions I don’t experience that I don’t know about. So it is a legitimate choice to not seek out professional diagnosis even if self-diagnosis has been made.

I’ve also noticed this misconception that self-diagnosis is shallow and ignorant, for example, seeing a meme about being disorganized and self-diagnosing with ADHD. I’ve also seen the misconception that self-diagnosis is minimizing disabling conditions, for example, enjoying cleaning and referring to oneself as being “lol so OCD.” The latter is not self-diagnosis and the former is highly unlikely (although seeing relatable memes can make one realize that they should research further). Self-diagnosis usually involves a lot of research, soul-searching, and engaging with community (I love Autistic Twitter, as can be inferred by my last entry). Speaking of Twitter, it was Disabled Twitter that gave me the aphorism “Don’t confuse an hour-long lecture with my lived experience” in response to some #DoctorsAreDickheads (thanks to @crippledscholar for that hashtag) blubbering about how baaaaaaaaad self-diagnosis is. Look, I’ve been through doctorate-level biomedical classes. They’re hard. I respect passing them. But I agree wholeheartedly with “Don’t confuse an hour-long lecture with my lived experience.” Self-diagnosis based on lived experience and autodidactic study is valid…yes, even if what someone learned in a one-hour lecture (or longer classes/labs, or whatever; the ultimate experts on disability are Disabled people themselves) says differently.

There’s also the matter of self-diagnosis often being necessary for professional diagnosis, i.e., that people don’t seek out professional diagnosis unless they believe they have a condition that warrants professional diagnosis. This is often touted as a reason why self-diagnosis is valid, but I feel like that’s sort of missing the point. Self-diagnosis is valid because…well, because of all the reasons I listed above, not because it’s a step on the way to professional diagnosis. That would imply that professional diagnosis has ultimate validity, which isn’t true.

Lastly, people who have been professionally diagnosed need to stop being assholes about self-diagnosis. We’ve been through that violent, oppressive gauntlet; why can’t we have sympathy for those who, for whatever reason, can’t endure that gauntlet? Not to mention the idea that self-diagnosis delegitimizes professional diagnosis is nonsensical bullshit and I haven’t the faintest idea why anyone would think that. I don’t even know how to argue with that point. It’s like trying to argue with someone who thinks the existence of the Main Asteroid Belt makes the sun dimmer. It’s so obviously not true I’m just gobsmacked.

That’s all I have for now. Stay safe. And wear a fucking mask.

Many thanks to my Patreon supporters: Ace, Hannah, Emily, Kael, Karina, Mackenzie, Rose, and Sean! If you want to be as awesome as them (and see my entries two days early, among other perks), consider supporting me on Patreon: patreon.com/arzinzani

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.

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.

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.