The War on Pain Patients

CW: medical, medical malpractice, ableism, near-death experience, medical violence, suicide, MAiD, eugenics

Note: this entry will focus on conditions in the US and Canada, because that’s what I’m familiar with.

On October 27, 2022, I almost died.

I was under general anesthesia at the time; I was undergoing surgery to repair my paraesophageal hernia. (A paraesophageal hernia is a large hole, larger than the natural aperture should be, in the diaphragm around the esophagus.) Not only was my stomach protruding into my chest cavity, my lungs had fused to my esophagus. No, I don’t know how that happens either.

I experienced cardiac arrest and double pneumothoraces. In layman’s terms, I had a heart attack and both my lungs collapsed. I was rushed to the ICU, where I was intubated (tubes were inserted into my lungs to reinflate them). I was in the ICU for six days. This included a spell of ICU delirium, which is a state of severe confusion that afflicts some people who have been in the ICU, especially those who have been on breathing machines. And apparently, delirious!Amaranthe was PISSED. I had to be put in a four-point restraint, and I was fighting tooth and nail. According to my wife, who witnessed this, there was some surprise regarding how strong I was. (I mean, I did martial arts for 20 years.) I’m very glad I have no memory of this.

Once I was awake, lucid, and stable, I was sent home with only ten (10) hydrocodone pills and guidance to only take them if I absolutely needed them; otherwise, I was to take ibuprofen and naproxen. When I used them up, I was told that I was not going to be prescribed any more narcotics. This despite the fact that I was experiencing post-surgery pain that regularly hit an 8 or 9 on the Mankoski scale. NSAIDs didn’t help. Even kratom, the only thing besides narcotics that can touch my menstrual cramps, didn’t so much as touch the pain. On one occasion, my vision began to dim and become gray due to the intensity of the pain. (Yes, I should have gone to the ER, but I knew I couldn’t afford it.) Because I hadn’t been at my current job as a full-time employee for at least six months, I had to use sick days for my time spent recovering from surgery, and I had to go back to work after a scant two weeks off. The pain interfered with my work performance. 

At my post-surgery follow-up appointment, which I showed up to looking wan and exhausted with an electric heating pad practically attached to me, my surgeon told me to take Aleve.

Aleve.

After almost dying.

And starting to lose my vision.

My attempted appeal to crapitalism (“I can’t work with this pain”) didn’t even make him budge. So I went home and asked my PCP if she could prescribe narcotics since my surgeon wouldn’t, and my PCP backed my surgeon. This is because my surgeon is a general in the war on pain patients, and apparently my PCP is a soldier.

What do I mean by “the war on pain patients”? Well, it’s often called “the war on drugs,” but “war on pain patients” is more accurate. Really, pain patients are collateral damage in the war on drugs. The war on pain patients includes fearmongering and misinformation about opioids (including fentanyl), addiction, and refusal to prescribe opioids to people who need them. The hatred of opioids in the medical community is truly baffling to me; I mean, my surgeon told me that opioids “don’t help, they just numb your senses.” YES, SIR, THAT WOULD BE WHAT I WANT TO HAPPEN. I FAIL TO SEE THE ISSUE HERE. 

The CDC, who I’m extremely pissed at for the way they’ve handled COVID, is somewhat to blame for the hatred of opioids in the medical community. The CDC’s guide to prescribing opioids was restrictive enough that doctors who listened to it—or who already hated opioids and were using the CDC’s guide as an excuse—didn’t just minimize the number of opioid prescriptions that they wrote, they cut people off who were already taking opioids. This resulted in pain patients being tapered off their medication too fast or even abruptly going cold turkey. Can this cause withdrawal and other severe issues? Of course, but do doctors care about pain patients’ health as long as they can say they don’t prescribe opioids? Pffff, NO. 

Okay, that’s not entirely fair, but even doctors who know that they should be prescribing narcotics are screwed because of the DEA (Drug Enforcement Administration). Doctors who write “too many” opioid prescriptions can lose their ability to write controlled scrips or even their medical licenses. So even doctors who know that their patients need opioids balk at actually writing the prescriptions because they’re too afraid for their careers to properly treat pain.

It’s not just me saying this. 

One of my closest friends, who is a chronic pain patient, recently told me that doctors who refuse to prescribe opioids to patients who need them are violating the Hippocratic oath, and I completely agree. She knows what she’s talking about, too; she takes ADHD medication, which is controlled and could fetch a higher street value than narcotics, and despite her being compliant and safe with those meds, she has been denied opioids that she genuinely needed. She also did a sensitivity read of this blog entry, during which told me about how pain clinics and/or pain management are, and I quote, “a steaming crock of shit.” Many “pain clinics” don’t prescribe any opioids, period. Most will make you sign a contract in order to be treated, and said contract includes bullshit requirements such as random drug tests, random pill counts, a proscription on getting opioids from anywhere else (even the ER), and forcing obedience to their rules in exchange for any medication whatsoever. Many “pain clinics” will fire patients—yes, really—if they admit to kratom or cannabis use (and the clinics drug-test for both). The friend who taught me these things about “pain clinics” was once being treated at one of these bullshit places and lost an oxycodone scrip because a random drug test revealed that she was negative for hydrocodone, which is different from oxycodone.

Another friend described to me how her partner has chronic pelvic floor pain but his insurance will no longer cover his pain medication. This same friend also told me about how her mother recently had kidney surgery and was sent home with no narcotics whatsoever and told to take Tylenol. Yes, Tylenol, the trash drug that barely works better than a placebo and has a high likelihood of damaging your liver. (More from Rebecca Watson: https://www.youtube.com/watch?v=GH1sEGmOrT0)

Why is the war on pain patients so harmful?

Well, you know what happens when pain patients can’t get the pain control they need? Not just intense suffering, which leads to increased disability (trust me, pain is disabling). Sometimes pain patients die by suicide because they would rather die than live with their pain. I would imagine that sometimes death by overdose when pain patients turn to street drugs happens too, but I don’t want to make claims that I can’t substantiate, so I can only speculate on that. (I also live in the Midwest US, where fearmongering and misinformation about opioid overdoses—from both illicit and prescription drugs—is common, and it’s hard to sort out fact from fiction.) It’s not just the Midwest, either; any former industrial area seems to have more of a fentanyl/heroin problem than other places. This isn’t just because of economic depression leading to drug use as a coping mechanism, either; workplace injuries contribute to need for pain control. Also, Canada is now pushing MAiD, medical assistance in dying, on Disabled people who are slipping through the cracks in the social safety net. That includes pain patients who are being denied opioids, many of whom can’t work as a result of their uncontrolled pain. When Disabled people in Canada who can’t work request services, MAiD is suggested to them in order to save money. The war on pain patients is literally killing people.

“But Amaranthe,” you might say, “what about addiction?” Well, what about it? If you had chronic pain, chronic pain so terrible that you couldn’t so much as move without opioids, chronic pain that kept you from basic activities of daily living without the medication you needed…wouldn’t the fact that you genuinely needed opioids long-term look like addiction to an asshole doctor who hated narcotics? There’s a conflation of addition with actual need in conversations about opioids. Yes, being dependent on an opioid can happen, but that happens with plenty of medications that are needed long-term. Hell, I’m dependent on my antidepressant, without which I become to much of a suicidal mess to function. Opioid dependence is erroneously seen as addiction, and addiction is still better than, you know, death. 

Fortunately, my post-surgery pain is almost completely gone, and I’m recovering well. But there are still thousands of pain patients who are suffering from both pain and discrimination, and being labeled drug-seekers and being denied adequate medical care. And that needs to change yesterday. Honestly, I feel bad just writing about this topic now—I’ve been planning on it since I first started this blog—but I didn’t have the requisite experience to write about it from my own perspective until recently.

I think that’s all I have for now. Sorry it’s been so long since I updated this blog; I did almost die.

More on the CDC fuckery: https://www.cdc.gov/mmwr/volumes/71/rr/rr7103a1.htm

A Plea for Help

CW: sick pet

Good morning, dear readers.

I may have mentioned my ESA, B’Elanna, in past blog entries.

She needs surgery. Without it, she can’t breathe properly and may die.

Please share my GoFundMe for her if you can’t donate: https://www.gofundme.com/f/get-belanna-the-feline-esa-necessary-vet-care

Thank you,
Amaranthe

Healing From Trauma for the Sake of Others

Content/trigger warning: ableism (especially saneism and autmisia), abuse discussion, detailed description of DARVO, saneist slur (censored) used to make a point

So. Healing from trauma for the sake of others. I’m going to do something a little unusual for this entry: I’m going to start by talking about something that happened to me. It happened months ago and has been really weighing on my mind ever since. I have to get it off my chest.

I was on a Discord server for a music YouTuber for a long time. I was even a moderator. Until the day I was DARVO’d and bullied off of the server.

It was mostly a good time there, but I noticed a lot of ableism. Autistic people were tolerated unless we were too socially awkward, in which case we were mocked in the mod chat (and I am pretty sure at least one of the other mods was also Autistic; just goes to show you how lateral autmisia sucks). Granted, some of the Autistic people who were eventually banned from the server did behave inappropriately, but the mods didn’t behave appropriately towards some of them either. Because autmisia.

I was a Good Autistic™, which enabled me to become a mod. I butted heads with the other mods frequently, especially one who I will call D and one who I will call U. U was frequently mean to people who behaved inappropriately on the server and sometimes to people who were just going about their business; U had experienced significant trauma and had cultivated a tough, badass attitude in order to cope. (I’m not speculating here; they basically said as much.) I frequently reported U to the server owner for their inappropriate behavior. U had no sense for healing for the sake of others either; once, they inboxed me to tell me to stop mentioning my trauma even though everything I said was spoliered and warned for appropriately. (But they could talk about their trauma all they wanted. Funny, that.)

I argued with D a lot, but the worst part/biggest red flag was when I got in a fight with him when he defended Awkwafina’s anti-Blackness and accused me of manipulative behavior when I argued with him.

So the day I got DARVO’d. What happened?Another server user (I will call her J) said something totally innocuous that was uncharitably interpreted by D and U. U bullied J off the server with D’s help. U’s bullying was extremely triggering for me to see because it reminded me of how my abuser used language (ostensibly asking a question, but actually making an accusation). I went into the mod chat against my better judgement–I was triggered and should have stepped away, but I wanted to do the right thing for J–and called out U (not D) for bullying. I said U’s behavior was triggering to me and that U had used language in a similar way to my abuser. However, I did specify that I didn’t think U meant it that way.

U and D went OFF. D said I was acting like his abuser and accused me of gaslighting and playing the victim. U trotted out their traumas–including shit that should have been trigger warned for but wasn’t–like that automatically made them right and me wrong. I kept trying to explain my perspective and U and D kept misinterpreting me and calling me abusive.

The term for when an abuser is called out and accuses the person calling them out of being the real abuser is DARVO, which stands for Deny, Attack, Reverse Victim and Offender. (Ironically, D also accused me of “calling [him] the real abuser” even though I said fuckall about his behavior; U had been way worse, so I only called them out.)

Another mod stepped in and accused me of making assumptions about U’s motivations even though, again, I had specifically said that I didn’t think U meant to bully J or trigger me. The dogpile was too much. I sent a note to the server owner and left the server permanently.

I later sent another note to the server owner explaining what had happened and detailing U’s and D’s abusive behavior toward me. (I didn’t use the words “abuse” or “DARVO,” but I did call it bullying.) I also apologized for the mess; it was partially my fault, as I should have gone directly to him, not the mod chat, since I knew U was an incorrigible bully, and I should have waited til I wasn’t triggered. I also admitted that I shouldn’t have said anything about how U had triggered me. I also said to the server owner that I hoped the whole thing hadn’t triggered his anxiety, which he had been open about. Instead of replying to me and telling me that D and U would be dealt with appropriately, the server owner ignored my message and blocked me on YouTube and Discord.

Why did this happen? Why was I treated this way by not only D and U, but the server owner?

My guess, for a while, was lateral saneism.

“But Amaranthe,” you might be saying, “your bullies had PTSD! The YouTuber had anxiety! How could they be saneist?”

Well, that’s why I said laterally saneist. Also, they had PTSD and anxiety; I was the only one who had CPTSD. I was the only one with alters. I was the only one with a personality disorder. And I was open about all of those things.

They were mentally ill; I was cr*zy.

See, as hard as I fought against ableism on that server, people who had been banned or people who (on or off the server) had exhibited abusive behavior were called saneist slurs and terms (especially ones targeting unreality and/or PDs) by…basically everyone but me in the mods only chat on a regular basis. There was an inextricable link between abusive behavior and severe mental illness in their minds. I’m pretty sure that that’s why I was the one who was ignored and blocked despite the fact that I was the one who was DARVO’d and bullied by the other mods.

Sucks.

But lateral saneism doesn’t explain everything, now, does it? Especially what U and D did. Why did U trot out their traumas like the fact that they were so traumatized was proof that they were right? Why did D accuse me of acting like his abuser?

They hadn’t healed sufficiently. Like I mentioned earlier, U had no sense of healing for the sake of others. They were still as raw as an open wound and had built their entire personality around protecting that wound. Part of that personality included lashing out at anyone who threatened their persona, or…well, even disagreed with them. Obviously not everyone who has unresolved trauma lashes out at people they perceive as threatening, but it can happen. I used to be like that too, until I started EMDR.

D, too, was quick to accuse me of acting like his abuser because he felt threatened that I called out his friend. I’m pretty sure that if he had confronted and processed his trauma, he wouldn’t have perceived me rightfully accusing his friend of bullying as threatening to him. When you’re highly traumatized, you’re very sensitive to threats, sometimes when they’re not there. (This is another thing I know from personal experience.)

And I’ve noticed that people with trauma who really need to heal for the sake of others are really…uh…well, I see this a lot online. It’s common to find Discord servers where you’re expected to spoiler and trigger warn for shit like the anime that someone’s toxic ex liked, and there are dozens of these obscure triggers that you’re expected to keep track of; that in and of itself can be an accessibility issue. I had to leave one server because literally any mention of mental illness had to be spoilered and warned for, which was de facto saneist. I mean, do these people who demand their obscure triggers be accommodated online go up to people in real life and say “Don’t use the words ‘at all’ at the end of a sentence, that’s triggering to me”? Probably not! I mean, the words “at all” at the end of a sentence used to be one of my actual fucking triggers until I worked through it in EMDR, and I didn’t ask people in real life or online to not do that, because that would have been fucking silly.

You can’t expect the entire world to conform to your trauma. The world isn’t responsible for that. Trigger warnings are critical, of course, and there may be shit that you may never get over, and it’s still a good idea to trigger warn for really common triggers like sexual abuse, murder, child abuse, etc. But if you have a shitload of obscure triggers like I did, you’re going to be fucking miserable and full of fear all your life if you don’t process your trauma in addition to imposing on people who aren’t responsible for the fact that the UK spelling of “behavior” is one of your triggers. (If you guessed that that also used to be one of my triggers, you’re right.)

So how do you heal for the sake of others (and yourself)?

EMDR was the ideal solution for me and I can’t recommend it enough. (I’m actually currently reprocessing the Discord DARVO with my therapist, funnily enough.) And if therapy isn’t accessible to you for whatever reason, learn meditation/deep breathing. Find coping mechanisms. Learn what self-care looks like for you. Take up a new hobby that doesn’t involve the Internet/media consumption so much, like cooking or knitting. Hell, Google “how to deal with PTSD triggers” and you might find some good information. (Note: there are “DIY EMDR” videos out there, and I don’t recommend those; EMDR needs to be handled by a trained professional.)

Just don’t fucking DARVO people because your own trauma makes it hard to handle being called out when you fucked up. Okay?

And with that…holy shit, this blog has been around for FIVE FUCKING YEARS. I can hardly believe it! Thank you so much to my Patreon supporters: Ace, Hannah, Emily, Mackenzie, Sam, and Sydney! It’s only $1 a month to be as cool as them, and that also gets you early access to my blog entries and access to polls about what I should write about next!

Today Is Carrie Fisher’s Yahrzeit

Content/trigger warning: death

For those who don’t know, the yahrzeit is the anniversary of death according to the Hebrew calendar. On a yahrzeit, it is appropriate to light a special 24-hour candle and have a moment of silent introspection before saying “may his/her/their memory be a blessing” in Hebrew.

Because I’m converting Reform, I decided to say my introspection aloud before lighting the candle. This is, more or less, what I said:

It’s weird to feel shame about missing someone. I never even met her. But I think what was so extraordinary about Carrie Fisher was how many people whose lives she impacted without meeting them. Or meeting them briefly; she could buy an artist’s work at a con and it would just make their day. She was unbelievably brave and unabashed when it came to speaking out about mental illness self-advocacy and anti-saneism. She was and continues to be an inspiration to me in that regard. I can’t think of anyone else who inspires me the same way in that regard. And while it’s not fair that she was only 60 when she passed, hopefully we can all keep Space Mom’s memory alive by being unabashedly ourselves, standing up to saneism, and flipping off people who deserve it.

Zikronah livrakhah.

May her memory be a blessing.

The Story of My Twitter Handle

Content/trigger warning: cursing, mention of several forms of bigotry

Story time.

Those who follow me on Twitter know that my Twitter name is now “Mara The Id of Social Justice RAGE Lee”. This is because of a horrible interaction I had with a popular elitist, fauxminist YouTuber several years ago, and I’ve decided to laugh at it. But I want to talk about the story because I feel like call-outs happen in social justice, and how to reply to being called out constructively. That’s related to the horrible interaction, I promise.

Anyway, Elitist Fauxminist YouTuber (hereafter referred to as EFYT) was dating another YouTuber, hereafter referred to as YouTuber Boyfriend, when this happened. YouTuber Boyfriend made one too many neurotypicalist comments and had also been bad at checking his cis privilege and had been…let’s just say clumsy when discussing anti-Black racism. So I left a comment about all three areas of fuck-uppery.

Anyway, I posted on Tumblr about my feeling like I’d acted like an ~*~SJW~*~ and was hoping to not have that internal struggle next time I called someone out.

That was a mistake.

EFYT saw the Tumblr post.

She agreed that I had acted like an “SJW” and, bafflingly, thought that I was making all of her boyfriend’s fuck-ups about race. She even said “why, oh why are you making this about race?” Uh, I wasn’t. You just misinterpreted what I wrote. Maybe you don’t know what “neurotypical” means, EFYT.

It gets worse. She then encouraged her followers to correct me about how I had fucked up/been an “SJW”. I was not just dragged, but drawn and quartered. It got so bad I dissociated for…I want to say two days. Too damn long, in any case.

So what does this have to do with my Twitter handle? Well, EFYT included the phrase “the id of social justice RAAAAAAAAAAAGE” in her Mara-sucks-let’s-tell-her-why post. And something about that phrase actually appeals to me. Probably because it nicely encapsulates both her hypocrisy and someone who’s supposedly a feminist using her advanced vocabulary to rub it in people’s faces that SHE IS EDUMACATED AND THEREFORE A BETTER PERSON THAN YOU. I also like that it is an Ayn Randian level of sounding high-concept but actually being utter bullshit. I mean…she wants to tell me I’m mired in “the id of social justice rage”? Fine. I guess I am (whatever the fuck it actually means). So sue me. I’m so sorry I am passionate when it comes to caring about other people.

Am I biased because she used the word “id” and I think Freud can get fucked in the ear with a Saguaro? Probably. Am I biased specifically against this person because seeing her face pop up in my YT recommendations is a dissociation trigger? Uh, YEAH. Of course I am. But I thought she was an elitist fauxminist before she retraumatized me, so. Make of that what you will.

You know, even though I remember this like it was yesterday (thanks, PTSD), it actually happened sometime between 2012 and 2014. So hopefully EFYT is a better person now. I still think having “The Id of Social Justice RAGE” in my Twitter name is funny.

What’s the takeaway? Don’t mess with Maui when he’s on a breakaway! Er. Sorry, I was just listening to the Moana soundtrack. The actual takeaway is that the knee-jerk reaction to someone calling out someone you care about is to defend the person you care about or even to attack the person doing the call-out. Assuming it’s a real call-out and not a shitty ad hominem attack…look, no one wants to believe that someone they love did a bad thing. But we’re all fallible, and I don’t know a single person who isn’t still unlearning at least some of the lessons the kyriarchy taught us. So when your partner fucks up, try to help them learn constructively. Comfort them if they’re upset and tell them you know they’re capable of doing better. And don’t send your followers after the person doing the call-out. Even if you don’t ask your followers to be abusive, they will be.

Two Years Now…

Content/trigger warning: Death mention

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

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

Several Things…

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

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

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

“Helpful” advice that’s ableist:

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

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

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

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

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

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

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

She Would Have Been 62 Today

Dear Carrie,

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

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

Love,
Mara

Walk in Red Instead Challenge

Content/trigger warning: mention of person-first language, discussion of ableism

The Walk in Red Instead challenge was originated by the runner of the Tumblr blog walkinredinstead. I fully admit I didn’t have the spoons to put a lot of effort into this, but for what it’s worth, here is my completed challenge. I did a similar entry last year for the Autism Acceptance Challenge; I did the challenge again this year on Tumblr, but I’m not putting it here because that seems kind of redundant.

Day 1: Favorite autism resources. ASAN and AWN (now called the Autism Women and Nonbinary Network) have some great information. Also, Autistic Hoya (http://www.autistichoya.com/), and @ebthen on Twitter. To be honest, though, I haven’t always seen eye-to-eye with ASAN, and a particular big-name Autistic advocate (who I’m terrified of because she bullied me to the point of triggering my CPTSD like whoa over a misunderstanding, but still) has spoken out about issues she has with ASAN, most notably their events not being accessible to people with photosensitive epilepsy. And one of their co-founders and former president is…uh…I don’t agree with his politics on some crucial issues. But ASAN’s resources on why Autism $peaks is a garbage fire are still good.

Day 2: Selfie day. Not doing this for my safety.

Day 3: Stereotypes. Oh boy. Well, I fit the stereotype that all Autistic people are white, as PoC are hella underdiagnosed. Other than that, I fit the nerdy Autistic stereotype, and while I am socially awkward, I’m not an asshole like Sheldon Cooper the Ultimate Autistic Stereotype. Actually, you know what, I feel like talking about that.

Ways in which Sheldon Cooper is an Autistic stereotype:

-He acts like doesn’t care about the other people in his life
-He’s desexualized for most of the show (because Disabled people can’t be sexual beings, right?)
-He reacts badly to change
-He is an academic hotshot
-He had nerdy intense interests as a child
-He currently has nerdy intense interests
-He’s white, male, and cis

Of course there’s nothing wrong with having nerdy special interests, but the whole asshole thing? That’s a negative stereotype. A lot of autistic people have difficulties with nonsensical allistic social skills, but we tend to be more accommodating than most allistic people because we’re used to needing other people to be understanding. Of course, some autistic people are assholes–there are assholes in every crowd–but being Autistic does not make one an asshole.

Also, being white, male, and cis is…how allistic people seem to think of Autistic people, but it seems like a lot of Autistic people aren’t straight or cis. And I already mentioned that too many Autistic people who aren’t white, male, and cishet are diagnosed late or not at all.

The nerdy special interests are a somewhat justified stereotype, but special interests can be in anything. Pop music, explosives, orchids, cyberpunk, pretty cell phone cases, Victorian literature, anything. It doesn’t have to be trains and superheroes.

Regarding the academic hotshot thing, that’s more of an…ugh…Asperger’s stereotype. IQ is an everything-ist metric that doesn’t measure much of anything useful (more on that in another entry), but Autistic people can run the gamut from being intellectually Disabled to being members of MENSA. To put in a less ableist way, Autistic people can have a wide variety of academic skills and learning difficulties.

Day 4: Support. I could ramble at length about how allistic people can support Autistic people, but the gist of it is: believe Autistic people and organizations who are in the know about neurodiversity and ableism, and forget everything you’ve ever heard from autism parents™ or allistic-run organizations. We–Autistic people–are the real experts on our brains and the accommodations we need.

Day 5: Labels. The correct label for an Autistic person is “Autistic”. Not “person with autism”. Being Autistic is an inherent part of the way an Autistic person experiences the world. Person-first language is both inaccurate in its implication that autism is a disease and ableist in its need to “put the person first” and distance the person from the disability as if disability is an inherently bad thing. Autistic people who use “person with autism” should be referred to as such–people are allowed to have internalized ableism and not value their own existence, fine, whatever–but there is no non-ableist reason for person-first language with regard to autism. There’s a reason I’m putting a content warning on this post for person-first language.

Of course, a caveat with labels is that some people eschew them altogether. I don’t understand that–even if I don’t identify as asexual, I still don’t experience sexual attraction, which means I fit the definition of asexual regardless of whether or not I use the term–but some people don’t like labels and don’t like being referred to with labels. Which is fine. If someone doesn’t want a label applied to them, don’t apply it to them, even if it’s accurate.

Day 6 was Autistics of Color Selfie Day, so needless to say, it wouldn’t have been appropriate for me to post a selfie even if it were safe for me to do so.

Day 7: Special interests. Oh man, I have so many. They are specific enough that I don’t want to list all of them, as there are people out there who would read the list and figure out that it’s me writing this. (People who I don’t want to know that I write this blog.) But here are a few:

-Science fiction, especially if it’s progressive, gay, or both
-Role-playing games
-My harem of fictional wives, most of whom come from science fiction
-Queer stuff
-Cats
-Disability justice (of course)

Day 8: Routine. Oh boy. I actually have a kind of a strange relationship with routines. I am generally productive and (somewhat) emotionally stable when I stick to a routine, and if I’m locked into a routine, I am prone to anger and mistakes when I have to break from that routine. But part of me hates routines because I long to be able to just do whatever the hell I want and relax for a little while.

Day 9: Favorite characters. Well, there are my aforementioned fictional wives, but I’m too identifiable by those, so instead I will also list a few characters I headcanon as Autistic. (Not all of them, as some of them are from obscure fandoms by which I could be identified.)

Steven Universe:
-Pearl
-Peridot
-Steven Universe

Harry Potter:
-Luna Lovegood
-Hermione Granger
-Neville Longbottom
-Arthur Weasley

The Hunger Games trilogy:
-Wiress
-Katniss Everdeen
-Primrose Everdeen

Other:
-Andy Dufresne (The Shawshank Redemption)
-Mako Mori (Pacific Rim)
-Prince Zuko (Avatar: The Last Airbender)
-Sarkan, the Dragon (Uprooted by Naomi Novik)
-Alexander Hamilton (Hamilton: An American Musical)
-Georgette “Buffy” Messonier (Feed by Mira Grant)
-Mel (Sunshine by Robin McKinley)

Day 10: Diagnosis. I was self-diagnosed at about 13, professionally diagnosed approximately 10 years later. I don’t really want to reveal too much personal, so have some bullet points about autism diagnosis:

-Autistic people who aren’t white, male, and cishet are underdiagnosed (as previously mentioned)
-Being a combination of non-white, non-male, and/or queer decreases chances of correct diagnosis
-Being professionally diagnosed has a lot of disadvantages, and it is a valid choice to not seek professional diagnosis
-Self-diagnosis is valid
-Being anti-self-diagnosis is a whole host of -isms (more on that in another entry, probably)

Day 11: Sensory. Oh, wow, where do I start? I have sensory processing disorder and can’t process any kind of sensory input if there’s bright light or loud noise. Simultaneous bright light and loud noise give me crying meltdowns. Some noises, textures, and sounds–especially textures–are…well, I used to have a good phrase to describe them that I can’t use anymore because it reminds of an abusive ex…uh, they’re just fuckawful from a sensory point of view and I can’t stand them. Wet sponges are about the worst. On the other hand, I love to stim…to be continued on day 14.

Day 12: LGBT+ selfie day. Well, I’m really queer, but I’ve mentioned that I can’t post selfies for safety reasons.

Day 13: Community. (Presumably that means the Autistic community.) I’m fairly active in it, and it’s mostly pretty awesome, but I’ve seen a lot of anti-cluster B saneism in a lot of Autistic-run Facebook groups. Because there’s anti-cluster B saneism everywhere besides cluster B communities. *sigh*

Day 14: Stimming. Stims stims stims stims stims 😀 what a good topic. I have a hand spinner that I love, and I often stim with music, but something I do that I feel like is pretty rare is olfactory stimming. I often wear perfume so I can sniff it and just luxuriate in the scent or feel more relaxed. I love going through my perfumes and sniffing them all. When I was younger, whenever I was in a restaurant or store where there were scented candles, I would smell them all. Olfactory stimming is my jam.

Day 15: Family. Blood is not thicker than water. The actual quote is “the blood of the covenant is thicker than the water of the womb”.

Day 16: Friends. I have some wonderful and supportive friends and I’m very grateful for them.

Day 17: Animals. I’ve always related to animals, especially cats, more than people. I currently have an amazing cat who is not a trained ESA, but she sure acts like one.

Day 18: Coping. Something I’m not doing too well right now. Which is why I’m not doing a very good job with this challenge.

Day 19: Mental health. Something I don’t have. A lot of Autistic people develop anxiety and depression due to dealing with ableism, and we’re especially prone to PTSD. As you know if you’ve been reading this, I have all three of those. And BPD. And OsDD.

Day 20: Free day. Can I go back to sleep?

Day 21: Communication. This is an important one. A lot of Autistic people can’t communicate verbally, either always or some of the time. AAC, ASL, writing, and even so-called “behaviors” are communication. Allistics will bang on endlessly about how “mysterious” Autistic people are and how impossible we are to understand. But they’re the ones who refuse to learn how we communicate.

Day 22: Fear. Hmm. Interesting prompt. I would have to say my biggest fear as an Autistic person is that some kind of “cure” (that will probably be based on insufficient evidence or poorly done research, since you can’t cure who a person is) will be promulgated by the mainstream scientific community. Either that or autism genetic markers will be “discovered”, leading to eugenic abortion.

Day 23: Emotions. My emotions are, um, fucking ballistic. I feel everything on a River Tam level. Is this because I’m Autistic? Is this because I’m borderline? Nobody knowwwwwwws!

In all seriousness, though, Autistic people’s emotional tendencies are as varied as allistic people’s; it’s just that not all Autistic people express emotions like allistics do.

Day 24: Autistic girls selfie day. I’m female, but again, safety reasons.

Day 25: Awareness vs. acceptance. I’ve already done an entry on this. Awareness hurts because it makes autism seem like a disease and is generally ableist in every way. Acceptance is necessary for Autistic people to live our best lives in a society that currently rejects us.

Day 26: Free day. Thank fuck; I don’t have the EF for this. I’m going to sleep.

Day 27: Rules/authority. Fuck both. They’re usually ableist.

Day 28: Peers. I don’t understand this prompt. I…don’t get along well with my allistic peers, I guess? I never have. I usually interact well with other neurodivergent people, especially Autistic people.

Day 29: Future. The anti-ableist future where I don’t have to tirelessly put up with and confront ableism constantly? Yes, please.

Day 30: Autistic pride. Okay, here’s my Autistic pride collection on Redbubble. https://www.redbubble.com/people/autisticbanshee/collections/510801-autistic-and-awesome