Being Disabled Is a Full-Time Job

Content/trigger warning: emetophobia, discussion of medical ableism and fatmisia, suicide, psych meds

Being Disabled means putting up with a truly unfathomable amount of bullshit, either from society, from your own bodymind, or both. (Note that I say “bodymind” because I have always thought separating the two was silly, and Disabled Twitter has provided me with a word that gets the connection between the two across.) Obviously the specific type of bullshit varies depending on a person’s disabilities, and I can’t speak for the entire Disabled community, but just for an example, I will go over a typical pre-pandemic day for me to demonstrate just how much work being Disabled is on a quotidian basis.

-I wake up. It takes me multiple alarms to get up because of my hypersomnia. I debate skipping work to sleep til 3 PM, but I’m too afraid of losing my job to do that, so I get up. I’m already exhausted.

-I take my antacid for my hiatal hernia-induced GERD and set an alarm for half an hour. I need coffee to function because of my hypersomnia, but if I drink it before the antacid has kicked in, I will be vomiting uncontrollably for hours. I make my coffee and put it in a travel mug for when the alarm goes off.

-I get dressed. I avoid looking at reflective surfaces because seeing my reflection when I’m particularly or fully undressed gives me horrible body dysmorphia. If my clothes are too tight, I also get body dysmorphia and have to change.

-I commute to work. My anxiety is so bad I can’t drive, so I don’t own a car; I take the El. I have to wear ear defenders or listen to music in order to deal with the noise from the other commuters. If I have to be squished in close with other commuters because the train is crowded, that puts me at risk of having a meltdown.

-I drink my coffee. Ahhhh. I use the coffee to wash down my psych meds.

-I arrive at work. The overly friendly security guard tries to make conversation. I try to reply with “small talk” even though it’s costing me dearly fuel-wise to try to figure out socially appropriate things to say.

-Morning meetings should help me plan my day, but I can’t focus during them. Sudden tasks come up without warning, putting me at risk of having a meltdown.

-I have so many meetings over the course of the day. I wish I could skip them to just do my actual fucking job, because I can’t focus during meetings anyway, but I can’t. Meetings also force me to engage in more small talk, which is exhausting and difficult.

-If I am having a bad brain day, especially if I forgot to take my meds, I have to talk myself out of leaving the office and walking into traffic. I first experienced suicidal ideation as a child, and my brain has spent so many years telling me that I want/deserve to die that I still experience those thoughts pretty regularly. I also have to talk myself into eating/convince myself that I deserve food, especially if I have had the misfortune of seeing my reflection that day.

-I also probably spend some of the day dissociated, and if I get startled or otherwise experience a trigger for one of my trauma-related disorders, I have to spend energy dealing with flashbacks or one of my protector alters trying to fuck shit up.

-I commute home. It’s pretty much the same as my commute to work, except I’m even more exhausted now and as such at higher risk of having a meltdown.

-I get home. I reheat some leftovers and maybe take a shower. Showering isn’t hard for me–I love showers–but I’m one of the few Disabled people I know who has an easy time with showering/bathing.

-I spend time with my wife and cat, then I fall asleep. I have to get at least 11-12 hours of sleep to be able to function the next day because my life is so exhausting.

See what I mean? That’s a lot of shit to deal with that wouldn’t even be on my radar if I were abled. Notice that I didn’t even include any chores like cooking, cleaning, or taking out the trash; that’s because I almost never have the fuel to do chores after such a long-ass day. This is why I’m always behind on chores.

And don’t get me started on all the shit I have to do in order to keep my health in its partially functional state. Actually, yes, get me started, because that’s what I’m writing about. I don’t have a PCP because I’m broke and scared of medical fatmisia and I don’t see enough specialists because I’m broke and can’t do phones…but if I were on top of my shit, I would be regularly seeing a PCP, a sleep specialist, and a GI specialist. As it is, I see a therapist and a psychiatrist, both of which require a ton of time, energy, and money. (Especially therapy; that shit is work, some of which needs to be done outside of my therapy sessions.) Staying on top of refilling my psych meds also takes time and money. If I did see all the specialists I should be seeing, I’d practically need a damn secretary to make all my appointments for me, if only because my Autisticness means I can rarely handle phone calls.

Also, when you’re Disabled, doctors often don’t know how to deal with you. A lot of Disabled people are fat and tend to get told “just lose weight” when we have health complaints. Not to mention if I did a Twitter poll of the chronically ill community asking if they had to explain their own illnesses to their doctors, I’d bet the poll would come back with an overabundance of “yes” answers, especially among people with “rare” (read: underdiagnosed) illnesses. When doctors don’t know our condition/s well, that means we have to do research. That’s a lot of time and energy spent on work that shouldn’t be our responsibility, but doctors rarely can admit when they don’t know things, and doing research is often key to Disabled patients’ being able to advocate for ourselves when our #DoctorsAreDickheads (thanks to Stevie Boebi for the hashtag).

There’s also the issue of medication. I’m lucky enough that I only take a few pills in the morning (and I also have an anxiety med to take as needed). Many Disabled people have delicate and complicated medication schedules that they have to keep track of. Sometimes this can involve going into a doctor’s office for a treatment; sometimes it involves having a pill reminder. Remembering to take medication and taking it can be a huge part of a Disabled person’s day.

I also want to emphasize that anyone who says “Well, just get on disability if being Disabled is a full-time job” is a towering pile of ableist shit-garbage at worst and ignorant at best. In many states, the percentage of people who apply for SSI or SSDI and get it is in the fucking twenties, and if you are approved, the process takes years and is extremely difficult, humiliating, and inaccessible.

I think that’s all I have for now. Thanks to my Patreon supporters: Ace, Hannah, Emily, Mackenzie, Sara, and Sydney! To be as cool as them, it’s only $1 a month to see blog entries two days early and to vote in polls to help me choose what topics to blog about.

Autistic and Other ND Masking

Content/trigger warning: mention of murder by police, discussion of ableism

I’m so fucking tired.

I actually have an accomodation at work that allows me to turn my Zoom camera off whenever I want. This is because performing neuronormative facial expressions is fucking exhausting and I can’t do it for long. Performing neuronormative facial expressions is a part of what Autistic people call “masking,” which is a word for “pretending to be neurotypical.” Not all Autistic people are able to mask, and masking has recently become something of a hot topic on Autistic Twitter and TikTok. Despite being neck deep in the online Autistic community, I’m only just becoming familiar with masking and how I mask. I mean, during Zoom meetings, I still have to modulate my vocal cadences to sound neurotypical even with my camera off, and I only realized when writing this blog entry that that was a form of masking. Other forms of Autistic masking can include:

-Suppressing stimming
-Forcing eye contact
-Standing differently/mimicking neurotypical body language
-Learning and following social scripts, some or all of which may not align with actual views
-Using pre-prepared jokes or phrases
-Engaging in popular activities, especially social ones, that we don’t want to engage in
-Refraining from infodumping

Honestly, learning some of what constitutes masking made me a little bit surprised at how much I mask. And it makes me wonder if masking so much is why I’m so fucking exhausted all the fucking time. Because what happens when you force an Autistic person to mask?

Exhaustion.

Meltdowns.

Burnout.

Masking is hell. It’s draining. It’s concealing the essence of who you are. It’s like expecting a person to hack off parts of themselves in order to fit into a designated space. And yet it wasn’t even widely discussed enough for a lot of Autistic people (HI) to know what the fuck it was until recently. We destroy ourselves in the name of ablenormativity and I’d be willing to bet most psychologists wouldn’t know what I was talking about if I tried to talk with them about “Autistic masking.”

You might be thinking “it sounds like society forces Autistic people to mask.” If you’re not thinking that, you should be. Masking is a safety issue, especially if you’re also part of a different marginalized group that’s at higher risk of, say, having the police called on you (and then being subsequently murdered) for acting “strange.”

Also, while masking is primarily discussed in relation to Autistic people, we’re not the only neurodivergent people who mask. I would say that any neurodivergent person suppressing themselves in order to appear neurotypical is masking. For example, an ADHDer who was masking might:

-Suppress stims/fidgets
-Get good grades through good memory despite poor organizational and study skills
-Overcompensate/try harder at tasks and activities to make up for developmental difficulties
-Joke or kid about ADHD-related mistakes
-Pretend to be incompetent to avoid high expectations
-Conceal that they’re experiencing RSD

I could continue making lists for how different neurodivergencies are usually masked, but we’d be here all day.

There also are a lot of conversations around masking that I don’t want to get into. Or at least, there are two conversations around masking that I don’t want to get into. These two conversations are:

  1. Autistic women and girls mask more than Autistic men and boys because women and girls are expected to be more pacifying and unobtrusive
  2. Whether or not being able to mask is a privilege

The first conversation often erases non-binary people and involves second-wave bullshit about being ~*~socialized female~*~ and I, a cis binary woman, am not qualified to address that particular stripe of bullshit. As for the second conversation, having been in situations when I was able vs. unable to mask, it mystifies me that there’s even a debate here. Of course being able to mask is a privilege. The fact that masking sucks to the degree that it leads to mental health breakdowns doesn’t mean it’s not a privilege to be safer and treated better than Autistic people who can’t mask. (And no, able to mask vs. unable to mask isn’t in any way the new “high functioning vs. low functioning,” don’t @ me.) But that’s not what I want to focus on here; I’m trying to give more general information about masking, not drop hot takes.

So what do we do about masking? At some point during the arc of me keeping this blog (it’s been over FOUR YEARS!? WHAT!?), I would have said “Take the mask off! Be yourself! That’s the only way to normalize Autistic behavior!”

Yeah, past self? That’s not fucking safe. Dismantling ableism is the name of the game, of course, but ableism is a structural issue that is inextricable from other forms of oppression. Actually, I don’t think I’ve shared the updated definition of ableism with my readers! This is the latest definition of ableism, modified this year, from activist Talila “TL” Lewis:

“Ableism: A system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, misogyny, colonialism, imperialism, and capitalism.

“This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s language, appearance, religion, and/or their ability to satisfactorily [re]produce, excel, and ‘behave.’”

So unmasking is not going to pull out the evil ableism tree at its roots; it might only pull off some of the leaves, or it might backfire spectacularly and put someone in danger. Do I want a society in which nobody has to mask? Absofuckinglutely. Do I think we should take off our masks whenever possible, because masking is so detrimental to health and well-being? Yes. Do I think that we should stay masked when it isn’t safe to unmask? Until the revolution, sadly, yes.

Hey, it’s complicated.

Thanks to my Patreon supporters: Ace, Emily, Karina, Mackenzie, and Sydney! If you’re reading this and are not a Patreon supporter, it’s only $1 to see blog entries two days early and participate in producer polls to help me choose topics to write about and $5 to submit potential topics for those polls!

Empathy

Content/trigger warning: discussion of ableism

Hello, dear readers! This is going to be a fairly short entry, but it’s what my Patreon supporters voted on. So, here we go: empathy.

First off, please don’t Merriam-Webster at me with what empathy ~actually is. Dictionary definitions are okay starting points, but they certainly don’t encompass the entire meaning of every word. I mean, look at the dictionary definition of “sexism;” dictionary.com has you slog through two outdated definitions about discrimination based on gender before you get to the correct definition, “ingrained or institutionalized prejudice against women.”

With that out of the way, what the hell actually is empathy? Empathy is the ability to experience what another person is experiencing. Not to understand what another person is experiencing or to know that another person is to experience something, but to perceive that another person is experiencing something and experience it as well. This is part of why I get miffed when people say “empathy” when what they really mean is “compassion.” The other part is–you guessed it–ableism, which I’ll go into a little later.

So, types of empathy. Yes, there are types of empathy! I learned this from Eb Brandeberry (@ebthen on Twitter). The three types are cognitive, emotional (also called affective), and compassionate. Compassionate empathy is the closest to what most people mean when they say “empathy;” it’s when you literally feel someone else’s suffering when you know they’re suffering. Emotional empathy is like compassionate empathy, but for other people’s emotions instead of their suffering. Cognitive empathy is when you can put yourself into someone’s shoes in regards to their perspective without necessarily engaging with their emotions.

So what does any of this have to do with ableism? Various disabling neurodivergent conditions can involve inability to experience or difficulty experiencing the three types of empathy. Interestingly, sometimes being ND can lead to hyperempathy; because I’m Autistic, my emotional empathy is off the charts. However, my cognitive empathy is next to nonexistent, and my compassionate empathy depends on whether or not I can identify that someone is suffering. Because people misuse “empathy” so much, it’s hard to do research on which neurodivergent conditions actually involve low or none of whatever kind of empathy, but some personality disorders also are associated with low empathy (BPD, which I have, is associated with low cognitive empathy.) So saying things like “empathy is required to be a moral person” is ableist (specifically neurotypicalist, I guess), not only because you actually mean compassion but because not everyone is capable of empathy. You also want to be careful with how you discuss neurodivergence and empathy, because, for instance, Autisticness can be associated with high or low empathy of various kinds, not to mention symptoms can vary between individuals with the same condition. So just be careful to say exactly what you mean when discussing empathy.

And…wow, short entry. But I did say it would be short. Go forth and use words correctly!

Thanks to my Patreon supporters: Ace, Emily, Karina, Mackenzie, and Sydney! If you’re reading this and are not a Patreon supporter, it’s only $1 to see blog entries two days early and participate in producer polls to help me choose topics to write about and $5 to submit potential topics for those polls!

Also, if you can, please help my ESA, who needs another surgery to prevent her cancer from coming back: https://www.gofundme.com/f/help-an-esa-kitty-beat-mammary-cancer?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf%20share-flow-1&fbclid=IwAR1rIjjoSEGOFR2arvpbtfmXzVPM_dZWG7_-nQl1vBaJaY79U76Nlyih_PM

Cringe Culture Is Neurotypicalist

Content/trigger warning: ABA, ableism (especially extreme autmisia), neurotypicalism

I write fanfiction.

No, I’m not giving you my LJ (yes, I’m that old) or ff.net or AO3 name. But I write fanfiction. I have written fanfiction since the age of four, when I saw The Lion King and immediately wrote fix fic to rectify Mufasa’s death. I had an OC, Kelsey the Good (read: was exclusively a scavenger and did not present a threat to living lion cubs) Hyena, who saved Simba from drowning in a river. Yeah, Kelsey was a self-insert to the degree that I thought of myself as Kelsey. I used to picture myself as a bipedal hyena walking into my kindergarten class. As recently as…well…now, while I don’t write self-inserts anymore, I still write fanfiction about characters that I over-identify with.

The kids these days call this kind of thing “cringe.”

SuperWhoLocks (fans of Supernatural, Doctor Who, and Sherlock) have been a fairly recent target of being called “cringe.” People who are enthusiastically fannish about their favorite TV show are often called “cringe,” especially if their favorite show is nerdy—have you ever heard someone say it’s “cringe” that grown zedcishet Statesian men are obsessed with football?—and especially if they’re high school age or older.

Stop me if you get where I’m going with this.

Actually, don’t, because this is a blog entry and you literally are unable to stop me from writing unless you have a TARDIS to go back in time and slap my hands away from my keyboard. A high schooler being obsessively interested in something the mainstream considers silly and unpopular…what does that sound like?

By chance, does that sound like an Autistic person with a special interest that’s considered “developmentally inappropriate”? Or an ADHDer with a hyperfixation? Or a person with depression engaging in escapism?

Now do you get where I’m going with this?

Despite or perhaps because of the fact that “cringey” interests tend to be those of ND people–and sometimes the neurotypicalism is more overt (i.e., calling hand spinners “cringe”)–douchezeppelins seem to think that shaming people with these interests is going to somehow help them. Apparently, said douchezeppelins think that shaming people will make them realize that they’re being “socially inappropriate” and that they need to “grow up” or whatever complete bullshit excuse they have for bullying. The bullying involved in cringe culture is not only condoned, it is celebrated. If I may quote a popular Tumblr post about cringe culture, “[fans] are degenerates that deserve to be shamed and we absolutley (sic) need cringe culture.”

Look, behavior shaming is just bullying, and if you are bullying someone for liking a thing, you’re being an absolute shitheel. I shouldn’t have to say that cringe culture is neurotypicalist to get people to stop bullying, but I’ve seen Autistic disability justice advocates say that cringe culture is crowdsourced ABA, and I agree with that to some degree, so let me go into that more.

ABA, or applied behavior analysis, is an abusive practice in psychiatry that is a form of conversion therapy to force Autistic people to act allistic. ABA often uses aversives such as forcing Autistic children to taste Tabasco sauce, and the actual techniques for ABA were based on dog training. ABA misunderstands Autisticness; it is based on the idea that Autisticness is a behavioral disorder and not a neurotype. The inventor of ABA, Ivar Lovaas, has said “Autistic children are severely disturbed…You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but l you (sic) have to build the person.”

So the tl;dr of ABA is that it’s an abusive practice that is aimed at forcing Autistic people to behave in a way that is palatable to NTs. While it isn’t only Autistic people who are targeted by cringe culture and its neurotypicalist bullying, I agree that cringe culture is an abusive practice aimed at forcing neurodivergent people to behave in a way that is palatable to NTs. I don’t think cringe culture shares the impressive rate of producing PTSD in ND people the way ABA does in Autistic people (yes, really https://neurodiversityconnects.com/wp-content/uploads/2018/06/PTSD.ABA_.pdf), but bullying is certainly traumatic. Cringe culture is socially sanctioned abuse that primarily targets neurodivergent people, and if you see someone on the Internet who still plays Undertale or who writes self-insert Pokemon fanfiction or who draws Bowsette fanart or what the fuck ever, please, let them enjoy things.

Thanks so much to my Patreon supporters: Ace, Hannah, Emily, Karina, Mackenzie, Rose, and Sean! To become as cool as them, or to see my blog entries 2 days early and get a thank-you in every blog entry, you can support me for $1 a month on Patreon: patreon.com/arzinzani

Online Activism Is Real Activism

Hey, everyone. This is going to be a short entry. I guess maybe I shouldn’t put options in polls unless I’m prepared to write about them, but this is what my Patreon supporters chose. I should do more polls so my Patreon supporters are getting something for their $5 pledge, so I should get used to writing things I’m not really prepared or inspired to write. This is an apropos entry for the times, though, since activism you can do while safe indoors from the fucking global plague currently happening…yeah, apropos, right?

Okay, enough stalling. Online activism. Often called being a “keyboard warrior” or a type of “slacktivism.” Also called being an “antivist” by the band Bring Me the Horizon, who have a song called such containing a lyric “If you really believe the things that you preach/Get off of your screens and into the streets.” Well, respectfully, BMtH, fuck you.

Okay, not just fuck you. Fuck you, and also understand that being a “keyboard warrior” is an important job, people who engage in online activism aren’t “slacktivists,” and we certainly aren’t “antivists” (which sounds like an unholy portmanteau of “activist” and “antis”–you know, the pro-censorship teeny-boppers with no sense of nuance who are too young to remember the LJ Strikethrough). “Get off your screens and into the streets” is a bullshit thing to say for several reasons, the first of which being that the streets aren’t accessible for everyone. Yeah, I protested Autism $peaks, but that was a fairly small protest of an organized walk, and even then I was barely able to handle it from a sensory perspective. If I went to a BLM protest, the crowd and people-noise would push me into a meltdown, and then I would be a liability instead of a help.

Granted, sometimes inaccessibility of “the streets” isn’t a barrier, depending on the situation–at the Capitol Crawl in 1990, the activists were protesting inaccessibility and the fact that they had to crawl was the point–but online activism is the only activism accessible to a lot of Disabled people. Someone who is just going to have a meltdown or is bedbound or is weak from chemo or is in too much pain to walk can’t get out there and march.

So in-person activism isn’t always accessible, which is why saying online activism isn’t real activism is ableist. Also, saying online activism doesn’t have an impact is just false. Most people think of online activism as people spewing half-formed thoughts on Twitter. However, Twitter lends itself pretty well to activism. Twitter threads often divide complex social justice concepts into easily digestible chunks, which is not only useful, it’s accessible for a lot of people, including ID/DD/LD people who may have trouble reading information in longer forms. I personally have learned a ton from Disability Twitter, particularly @Rose_TCA, @autistichoya, @VilissaThompson, @ebthen, @coffeespoonie, @mattbc, @dominickevans, and probably others that I’m forgetting. Fat Twitter seems to be pretty great too, except for the asswipe who told me that my eating disorder precluded me from being anti-fatmisia. (One of my protector alters came out and screamed about asswipery and social justice praxis. That was a fun day.) Jwitter is fantastic too, as is Black Twitter. I could do a whole blog entry on activists I suggest following on Twitter. But I’m getting ahead of myself.

I feel like I should mention Facebook. You might think that Facebook is a terrible place for sharing information about social justice causes, and I wouldn’t disagree. But it does seem like an excellent place for getting into arguments about social justice issues with your shittier family members. Unfortunately, this is a thing that needs to happen in activist lives. We need to advocate for ourselves and causes that we’re passionate about (even if they don’t directly affect us, e.g., my white ass helping my QP debate a family member about Black Lives Matter). Facebook, for better or for worse, is where this often happens. It hurts. It’s ugly. But it has to be done.

There are other methods of online activism besides disseminating information on Twitter or Facebook. There’s also Tumblr, which I’m not going to touch with a 39.5-foot pole, even though it was instrumental in teaching me about disability justice, cultural appropriation, and trans rights, because there is just too much bullshit on there. There’s also YouTube. I mention this because video has been instrumental in reality checking people who don’t believe that, say, police murder innocent Black people. Posting links to YouTube or news sites with embedded video on social media has been an effective way to raise awareness of police violence and other issues like abuse in insular cults.

Oh, right, I was going to talk about other methods of online activism besides disseminating information, not just mention other social networks. I believe in giving money directly to marginalized people. This happens a lot on Twitter to the point that many different marginalized communities joke about members passing around the same $20. Sharing and signing fundraisers is also a way to perform activism online. I’m kinda broke right now thanks to vet bills (https://www.gofundme.com/f/help-b039elanna-beat-lung-cancer), but I’ve donated to the Marsha P. Johnson Institute and a few bail funds. Signing petitions is another way to perform activism online (although you shouldn’t donate to change.org after signing a petition; just sign and donate to whatever cause directly). Yet another method of online activism is contacting policymakers via email or online forms; this is especially useful for people to whom phones aren’t accessible.

I’m also always surprised when people say that online activism isn’t real activism because SO MANY PEOPLE ARE ONLINE. Yeah, I could print this blog as a physical zine and distribute it around the city where I live, but I have a much higher chance of reaching people if I post it online. And there’s also a lot of bullshit online. I don’t think “Google is free!” is a very good response to social justice questions asked in good faith (unless the answer is very basic) because there is just so much fucking bullshit out there on the Internet. If there’s going to be multitudes of bigoted right-wing radioactive trash out on the Internet, I feel like there damn well better be correct information out there to combat it. When your conservative great-aunt posts some bullshit on FB, you can be there with a link to an infographic about how she’s wrong.

I think that’s all I have for now. Tl;dr not only is online activism valid and effective, but saying that online activism isn’t ~real activism is ableist. 

Thanks so much to my Patreon supporters: Ace, Hannah, Emily, Karina, Mackenzie, Rose, and Sean! To become as cool as them, or to see my blog entries 2 days early and get a thank-you in every blog entry, you can support me for $1 a month on Patreon: patreon.com/arzinzani

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

The Ableist Response to COVID-19

Content/trigger warning: COVID-19 (Coronavirus), ableism, eugenics, cursing, sick pet

Stop me if this sounds familiar.

You’re on Facebook, checking up on the latest from ASAN in preparation for Autism Hell Month and soothing your soul with kitten videos (or, well, that’s what you’re doing if you’re me) and you see a post that says something like this:

“DON’T WORRY ABOUT THE CORONAVIRUS! It’s only going to kill the elderly and the immunocompromised 🙂 You’ll be safe :)”

So…are elderly people and immunocompromised people…not people, then? Or don’t matter? Or don’t use social media? What exactly are you trying to say here?

Oh, right. You’re trying to say that you’re an ableist piece of shit.

This sentiment is also ableist because young, abled people who aren’t at high risk for infection and/or complications can be asymptomatic carriers. If you’re not worried about suffering from the virus yourself, you should be concerned about infecting your elderly grandparents, or your friend who’s on chemo, or maybe even a stranger on the train you take to work. 

In other words, I don’t know how to explain to you that you should care about other people.

But if you’ve been reading my blog for any length of time, you know that ableism is deeply entrenched. Abled people are conditioned to think of disabled people as subhuman and Disabled people are conditioned to think of ourselves as subhuman. While it’s beyond wrong to see Disabled lives as disposable in light of a pandemic, I can’t say I’m surprised.

Speaking of seeing Disabled lives as disposable, I’ve even seen worse outlooks on the COVID-19 pandemic. Eugenic outlooks, such as armchair epidemiologists saying that a certain number of susceptible people have to die before we achieve herd immunity for The Greater Good of Humanity. I’ve seen takes that outright claim (as opposed to implying, like the example I gave above) that no one who matters will be affected by the virus.

Now, a ton of people are at risk of being affected by the virus.

Here is a list of conditions that the CDC reports may be at increased risk for severe COVID-19 infection:

  • Blood disorders (e.g., sickle cell disease or on blood thinners)
  • Chronic kidney disease as defined by your doctor. Patient has been told to avoid or reduce the dose of medications because kidney disease, or is under treatment for kidney disease, including receiving dialysis
  • Chronic liver disease as defined by your doctor. (e.g., cirrhosis, chronic hepatitis) Patient has been told to avoid or reduce the dose of medications because liver disease or is under treatment for liver disease.
  • Compromised immune system (immunosuppression) (e.g., seeing a doctor for cancer and treatment such as chemotherapy or radiation, received an organ or bone marrow transplant, taking high doses of corticosteroids or other immunosuppressant medications, HIV or AIDS)
  • Current or recent pregnancy in the last two weeks
  • Endocrine disorders (e.g., diabetes mellitus)
  • Metabolic disorders (such as inherited metabolic disorders and mitochondrial disorders)
  • Heart disease (such as congenital heart disease, congestive heart failure and coronary artery disease)
  • Lung disease including asthma or chronic obstructive pulmonary disease (chronic bronchitis or emphysema) or other chronic conditions associated with impaired lung function or that require home oxygen
  • Neurological and neurologic and neurodevelopment conditions (including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability, moderate to severe developmental delay, muscular dystrophy, or spinal cord injury)

(Note: I have no idea if the CDC is including Autisticness under “developmental delay,” so I’m freaked. Not that healthcare providers take Autistic people’s health concerns seriously anyway.) So apparently, according to some abled fuckheads, anyone with any of those conditions is inconsequential. Their lives don’t matter.

I also want to bring up the intersection between classism and ableism in the response to the COVID-19 pandemic. Many low-income workers do not have paid sick leave, sufficient sick days, etc. and there have been goddamn senators blocking initiatives to mandate employers to change these policies during the pandemic. (As I’m writing this, Pelosi’s COVID-19 bill to pay sick workers to stay home has been fucked with by Republicans who demanded that employers with over 500 workers be exempt and Democrats caved.) This affects Disabled people because many of us were not able to complete higher education due to the intensely ableist violence inherent in academia and only have the option to work low-income jobs.

Speaking of work, many workplaces that can go to mandatory working from home are doing so. I have to work from home this coming week. Also, many universities/colleges are now holding classes remotely. Why is this ableist? It’s not; remote work and classes are more accessible than in-person work and classes. What’s ableist is that these workplaces and schools previously refused to allow remote participation for Disabled people’s accommodations. This demonstrates that the limp excuses about cost, practicality, etc. of remote work/class were all bullshit and rooted in ableism. Accessibility is only provided for abled people because Disabled people’s needs aren’t seen as legitimate.

Zipporah Arielle, also known as @coffeespoonie, has done a better job writing about this than I ever could, so if you’re interested in anything I’ve said here, I suggest reading her piece on being immunocompromised during the COVID-19 pandemic: https://www.huffpost.com/entry/disabled-immunocompromised-people-coronavirus_n_5e6a6acfc5b6dda30fc51c2f

That’s all I have for now. Stay safe, wash your hands for 20 seconds, and use hand sanitizer that’s at least 90% alcohol.

EDIT: Okay, I do have something else to say. As I type, #PanicShopping is trending on Twitter. That seems a strange way to say “hoarding months’ worth of items like bottled water and masks that Disabled people need more than you” to me, but I suppose what I just typed doesn’t make a pithy hashtag.

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

In other terrible disease-related news, my cat has an abdominal tumor that has a 90% chance of being cancer. It is scheduled for removal in two days and I’m still fundraising to pay for the surgery. Please donate and/or share widely if you can: https://www.gofundme.com/f/help-b039elanna-beat-mammary-cancer

Ableism in the Workplace

Content/trigger warning: discussion of ableism, ableist slurs (censored), cursing

Hello, dear readers! As I probably forgot to tell all of you, I’m working full time now as a medical editor. And if you have to sell your body, soul, and labor to a bastion of late-stage capitalism to survive–which you pretty much do have to do if you live in the United States–I’ve found a pretty good place to do that. My workplace has a group called DiversiTeam, founded and led by two women of color, aimed at increasing diversity, inclusion, and justice in our workplace. And one of the things I offered to do with DiversiTeam (along with checking our agency style guide for cissexist, heterosexist, and intersexist language) was a presentation on ableism in the workplace.

I work 50-hour weeks, so I’m not keen on doing too much other work outside of that, and since I’m already making this presentation, I thought I would do a blog entry on the same topic: ableism in the workplace. (Note: since this entry came originally from a presentation I’m writing for my workplace, which is an ad agency, this entry is going to be mostly geared toward offices. I could write an entirely different entry on ableism in laboratory environments and, knowing me, probably will at some point.)

I’m going to start with ableist barriers to entering a workplace. I know, not the same thing as ableism in the workplace, but it’s related. There are a couple of common barriers to workplace entry that I see, so I’m just going to list them:

  • Ability to lift 40 lbs
  • Bachelor’s degree
  • Ability to stand for long periods of time
  • Driver’s license
  • Inaccessible applications (such as ones that require you to type out your entire fucking resume even though they also are asking for your resume, what in the chicken-fried fuck whyyyyyyyy)

Note: I’m talking about jobs that have nothing to do with lifting, standing, etc, requiring these things. Obviously, if you’re going to do a job that involves driving, it makes sense to require a driver’s license.

Other ableist policies I see that exclude Disabled people from a workplace are:

  • Poor sick day policies
  • Disallowing working from home
  • Timing bathroom breaks or disallowing long bathroom breaks

I actually worked at a place that timed how long you took in the bathroom. Yes, really. And how long it took you to get up and get coffee or a snack. It was fucking ridiculous.

Other ways to make a workplace inaccessible include:

  • Not having accessible bathrooms, elevators, desks, or a cool-down room
  • Allowing people to wear scents or use scent diffusers
  • Clapping during meetings
  • Having only non-plastic straws available
  • Not having hypoallergenic food options at work parties

I’m going to explain a few of these. The not having accessible bathrooms, elevators, or desks is pretty obvious, but it may be less obvious why not having a cool-down room is inaccessible. There are many Disabled people with sensory issues or who could go into sensory overload, and workplaces can get very hectic and overstimulating, and it may not always be feasible to go hide in the bathroom when overstimulated. Also, an overstimulated person shouldn’t have to hide in the bathroom. There should be a space where they can go to cool down and get their bearings.

Next topic: scents. Scents can be migraine or allergy triggers. I love olfactory stimming, but I also support workplaces not allowing perfume, scented beauty products, or essential oil diffusers for accessibility reasons.

Straws. We’ve been here before.

Food. Lots of people have food allergies or illnesses that prevent them from eating certain ingredients. If you’re organizing a work function where there will be food, make sure you ask everyone’s food restrictions. And no, I’m not just talking about people on shitty fad diets. Celiac disease exists.

The rest of my presentation on casual ableism in the workplace is about ableist language, and I give an overview of ableist language in general and offer alternatives. You know, like I did here: https://thisisforyoucarrie.blog/2018/01/07/less-well-known-ableist-language/. Well, more like Autistic Hoya did here: https://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html.I will also say that one thing I’ve noticed about ableist language in the workplace is that saneist language is frequently used to describe how busy people are. “It’s a m*dhouse,” “I’m cr*zy busy,” etc. My coworkers also frequently use saneist terms and expressions to discuss their reactions to work, i.e., “that job gave me PTSD,” “I need a Xanax after this week,” “this client is driving me ins*ne,” etc.

I think that’s all I have for now. Many thanks to my wonderful Patreon supporters: Ace, Emily, Hannah, Kael, Karina, Mackenzie, Rose, and Sean. Reminder that if you support me on Patreon, you get to see my blog entries early!

Mental Health and Social Justice Call-Outs

Content/trigger warning: emetophobia, discussion of saneism and neurotypicalism, homomisia mention, suicidality mention, self-harm mention

I’ve had a really hard few days. Carrie’s yahrzeit and the anniversary of her death by the Western calendar, for one, and also December 26th is a traumaversary for me. Apparently Christmas is also terrible for my PTSD as well, as I spent half the day being violently sick for psychosomatic reasons. So if this blog entry is a little subpar, it’s because I’m operating at like a 35%.

I recently saw a semi-prominent YouTuber claim that a particular group of people had no consideration for mental health or respect for people with mental illness because they…drum roll please…were upset at him for using homomisic slurs. On the surface, this is bullshit. If you look deeper, it is still bullshit. However, it is still worth talking about mental health and call-outs, because call-outs can be triggering.

But first, I want to say that trying to defend your own bigoted behavior with “I don’t know any better, I’m neurodivergent” is neurotypicalist. Yes, really. Saying that neurodivergence makes a person incapable of understanding morality and justice is a particularly scary type of neurotypicalism and it needs to be stopped, especially if it has been internalized.

The rest of this blog entry is going to be about two things: how to call someone out while minimizing the chance of triggering someone and how to respond if a callout triggers you. Let’s start with minimizing the chance of triggering someone. Here are a few things you can do when calling people out to ensure that you don’t trigger any potential health issues of theirs:

  1. Discuss the person’s actions or words instead of making statements about them as a person. I know, I know, we are all everything-ist because oppression is built into our society and we’re all in the process of unlearning. I know. I’m not being sarcastic, either; I know. But saying “what you said was [blank]ist” instead of “you’re [blank]ist” may keep a person’s douchebag brain from latching onto “they said I’m [blank]ist, that means I don’t deserve to exist/I should self-harm/etc.” And of course, stay away from ad hominem attacks, which are bad social justice praxis in general.
  2. Don’t dogpile. Dogpiling can feel like a personal attack or be overwhelming to abuse survivors. If one or two people have the call-out handled, let them handle it. Only get involved if the person being called out is responding by being a belligerent asshole.
  3. If the call-out is happening online, don’t continually post lots of messages without giving the person being called out a chance to respond. A flood of messages, even from only one person, might be too much to process for the person being called out or might feel like an attack.
  4. This one is really specific, but I’ve seen it. Don’t mock the shitty thing the other person said using the Spongebob meme mixed-case text. That meme is disfiguremisic and ableist against ID/DD/LD people.
  5. If you did trigger someone with your call-out, don’t mock them for the symptoms they’re showing, including accusing them of “crytyping”. You should have seen how shot my fine motor control was after someone complaining about bicyclists riding on the sidewalk accused me of not agreeing with basic human decency because I suggested that more bike lanes might help. My PTSD was having a fit and a half.
  6. This is more of an accessibility thing, but still relevant. Don’t use sarcasm, especially in a text-only medium. If the person you’re calling out can understand sarcasm, it might feel like an attack. If the person you’re calling out can’t understand sarcasm due to neurodivergence…well, shit.

However, sometimes call-outs are triggering no matter what. I dissociate when I get an email from my boss, no matter the contents of the email. It’s annoying, but it’s not my boss’ fault. So if you’re triggered by a social justice call-out, here’s what to do.

  1. TAKE A BREAK. Disengage. Walk away. Count to ten. If you’re triggered, your ability to respond constructively is probably limited. Go engage in self-care, or do whatever you need to do to calm down.
  2. Only go back to the call-out when you’re ready. Evaluate whether or not the call-out used any of the tactics in the previous list, in which case you can–respectfully–tell the person who called you out how to change their praxis in the future. Also, if you can’t go back to the call-out for the sake of your health, don’t.
  3. Whether or not the call-out used any of the tactics in the previous list, evaluate whether or not you did the thing you were called out for. Maybe you did. Maybe you fucked up. We all fuck up. Nobody is a perfect bastion of social justice.
  4. If you did indeed fuck up, acknowledge your fuck-up. (But if you’re tempted to self-flagellate and be like “oh I’m terrible, I am just the worst person, I feel so awful I’m going to go cut myself,” you’re either being deliberately emotionally manipulative or you’re still feeling symptoms. Walk away until you can respond constructively.) Make a real apology, which consists of acknowledgement of wrongdoing and an indication of doing better in the future.
  5. Try to take the call-out to heart. This can be hard because if a call-out was triggering, even measured, respectful discussion of whatever -ism you were called out about can become a trigger or be retraumatic, and you just don’t want to think about it. (This has actually happened to me a few times.) Do whatever you have to process what happened so you don’t end up with a new trigger. If you have a therapist, you may want to talk about it with them.

I think that’s all I have for now. Happy (Western calendar) New Year!

BAD ME I have not been listing my Patreon supporters at the end of blog entries. Many thanks to Ace, Emily, Hannah, Karina, and Sean! To be as cool as these people, visit Patreon.com/arzinzani to pledge. Even a dollar a month is massively helpful!

Some Thoughts on Diet Culture

Content/trigger warning: cursing, disordered eating, discussion of diet culture

I hate diet culture.

You might be saying, “Of course you do, Mara. You hate everything.” And you’d have something of a point, but I don’t hate, for example, my wonderful fiancee. Or coffee. Or The Good Place. (Have you seen the latest season? So forking good. I just wish I didn’t have to wait until January for more episodes.) But I’m getting off the subject.

I’m not an expert on the harms of diet culture. You should go to fat justice activists for that. (For example, @yrfatfriend, @Artists_Ali, @femmina, @KivanBay, and @chairbreaker_ on Twitter). If you’ve been reading this blog for any length of time, you know that I’m aware that it’s basically impossible for an oppressive system, culture, etc. to be oppressive on only one axis. So while I’m going to talk about how diet culture is ableist in this entry, diet culture is also fatmisic (duh), classist, and probably buys into other -isms that I’m forgetting at the moment. (I’ve had really bad brain fog this………..month.)

What you do have to know about diet culture for this entry is that diet culture is based on 1) the fatmisic idea that thin bodies are better than fat bodies and 2) the scientifically inaccurate idea that caloric intake/expenditure is the only factor in body size. Now, there are many reasons why diet culture is ableist, mostly because fatness can be directly caused by or related to disability. Weight gain and/or fatness can be features of some disabilities; for example, PCOS or hypothyroidism. Many medications cause weight gain (Carrie Fisher, may her memory be a blessing, often talked about this). Some disabilities prevent people from exercising. Also entwining fatmisia and ableism is the fact that diet culture holds that healthy = moral and thin = healthy, so by the commutative property of diet culture bullshit, thin = moral. So disabilities that cause or are related to fatness are also seen as immoral/wrong/bad.

Also, diet culture encourages people to yammer about their diets to everyone they speak to. Why is this ableist? Because eating disorders are disabilities, and diet talk can be immensely triggering for people with eating disorders. I recently went to a Friendsgiving, and two of the people close to me at the table would not shut up about dieting and weight loss, and it’s a fucking miracle of self-control that I didn’t run to the bathroom and ram my fingers down my throat. So if, for whatever reason, you are on a weight loss diet, keep your fucking lips zipped about it unless you have permission from the people around you. Yes, I am saying this now because it is almost Turkey and Genocide Day. But even when food-centric holidays aren’t happening, use content warnings when you talk about your diet on social media and ask for permission before talking about your diet in person. And add content warnings for food too.

Speaking of which, diet culture encourages judge/shame people for making supposedly unhealthy food and lifestyle choices, so don’t fall into the diet culture trap of policing people’s food choices at Turkey and Genocide Day dinner. Or, you know, fucking ever. Even if there were no possibility that the person whose choices you’re scrutinizing had an eating disorder, it’s rude and none of your fucking business. The same goes for judging/shaming people for not going to the gym/doing yoga/running/whatever; even if it’s not a disability keeping someone from exercising or making “healthy” lifestyle choices (which may not be healthy for them, hence the quotes), it could be a class issue or other issue related to being part of a marginalized group, and it’s rude and none of your fucking business.

Another thing about diet culture that triggers my eating disorder on the regular is this trend that restaurants are hopping on of having calorie information for all the dishes on the menus. My feelings about how calorie counting for a so-called diet is a slippery slope to an eating disorder if not an eating disorder itself aside, many people with eating disorders or who are in recovery from an eating disorder can’t handle seeing calorie information. I don’t mind restaurants having calorie information available if a customer asks, but having calorie information right smack dab on the damn menus can make a restaurant inaccessible. I wish I knew how to actually do something about this. If you have any ideas, by all means, let me know.

So tl;dr diet culture is harmful as shit, keep quiet about your diet or make sure you have permission to discuss it so you don’t trigger anyone, and restaurants need to stop it with the calories on menus.

That’s all I have for now. I hope everyone survives Turkey and Genocide Day.