#calling it ableist to use the actual established name for the fashion

[pienhime]

yeah, that. my other main issue with it is that it still asserts jirai kei as being the name of a fashion, instead of an adjective to describe multiple fashions. then theres the fact that the people in it have harassed girly kei wearers into deletion, think menhera subculture is actually fucking evil (but tagging their posts cosplaying as jirai with it, using it in the derogatory "mentally unwell woman" way instead), call people who s/h publicly or do sex work "gross" and claim its a "problematic" thing to do/morally awful (despite one of them having been an OF girl before iirc but i might be thinking of her bestie so dont quote me and having made a video of her commissioning hosts at host clubs), but then go to kabukocho for uwu kawaii jirai kei fashion desu pics to post.

literally nothing ab these videos were good imo. like these girls not only arent jirai, they hate jirai, and they hate anyone who uses names of specific fashions instead of referring to shit with trendy words that imply the clothing is now inherently sick because it got popular with sick people.

also this is most EN speaking fashion/poser jirais first exposure to the term, so i blame this video in particular for all the "jirai kei is the name of a fashion invented by mentally ill teenagers that totally didn't exist before!! jirai kei has no negative meaning bc the fashionistas reclaimed it~" people

What is Jirai Kei? The Fashion Side Of This Currently Trending Style Fro...

I am always wondering what the Jirai community feels about this video and their opinion on it is.

[i-did]

Do you know when the racism and ableism accusations against Nora started? Because back when I was active in 2016/2017 and don't think they were a thing, or were very low-key. Was it something she said or are people just basing it off the things she wrote in the books?

From what I remember, the first time I heard the blanket statement of “Nora is racist/fetishizes gay men” blanket statement was early fall 2019 (which is so ironic for the fandom to say on so many levels lmao). There wasn’t a catalyst or anything, just she went offline 2016 and no new content was coming out and the aftg fandom is such an echo chamber that… an accidental smear campaign happened.

 Before then, I would see occasional “Nora used ableist slur” which… is funny (not that ableism isn’t serious) to me people care more about that than Seth saying the f-slur. IMO this is because with Seth, it clearly shows the character thinking it and not the author who is writing about what will be an end game mlm relationship. 

But anyways! Long story short, it's the fact that she’s an ace/aro woman who wrote a mlm book, and based off of the events in canon. There is no “Nora called me/someone else a slur” it’s “Nora wrote a book where slur(s) are used” and “the Moriyama’s are Japanese.”

Below I put my own opinion on these claims and go into more detail:

CW for discussions of: racism, ableism, mlm fetishization

Fetishization: (and mentions of sexism at the end)

To one question in the EC about her inspo for aftg she jokingly responded how she wanted to write about gay athletes. On other parts of your blog you could see she was a hockey fan and an overall sports fan (anime or otherwise) but I've seen this statement taken out of context and framed as “she's one of those BOYXBOY” shippers. Considering how… well-developed both Andrew and Neil’s relationship is, and it takes them until like the 3rd book and there is a whole complex ass plot going on around, you can see how that's just. Not really true. And considering the fandom is like… 85% women (queer women but still women) and I've gotten into a discussion with someone who is a woman and called Nora a fetishizer and was ignoring my opinions as a mlm, and I really just wanted to say “well what does that make you?” it's a very ironic high horse. She didn’t write 3 all 3 books to put Neil in lingerie pwp or crop-top fem-fatal fashion show, fandom did. 

Also, I talked to an ace/aro friend about this, and she talked to me about how AFTG spoke to her very much so as an ace/aro story. Neil is demisexual, Nora didn’t know of the word at the time of reading it, but she did get an anon asking if Neil was demi after, and she said “had to look it up, and yep, but he doesn't really think about it” (paraphrased). Obviously it would have been cool if andreil were canonly written as wlw by Nora instead, (which would have increased the amount of wlw rep and demi rep) but tbh I don’t think tumblr would have cared about it nearly as much and everyone would just call Neil a cold bitch–like people do with Nora’s other published book with a main character who's a woman. Plus they're her OC’s, not mine. 

The fact is that 50% of all LGBT+ rep in literature is mlm, mostly white mlm, and not written by mlm. I’m not going to hold her to a higher standard than everyone else, she already broke a shit ton of barriers in topics she discusses that otherwise get ignored. I’m grateful to these books for existing even if it's a mlm story written by a woman. I still will prioritize reading mlm written by mlm–and vice versa with wlw– in the way I prioritize reading stories about POC written by POC. But credit where credit is due, this is a very good story, and a very good demi story. 

Ableism:

To me, AFTG is a story about ableism and how we perceive some trauma survivors more worthy than others. Neil and the foxes using ableist language shows how people actually talk. Neil thinks shitty things about Andrew, like the others do too, and thinks he's “psycho”. The story ultimately deconstructs this idea and these perceptions of people. Wymack, someone who says the r-slur (which is still not known by the general population as a slur even in 2021 much less the early 2000s when the book was beginning to be written and what the timeline is based off of) is a character who understands Andrew better than most of the others do, and gives him the most sympathy and understanding despite using words like the m-slur and r-slur. Using these words isn't good, but it is how people talk, and this character talks. Wymack is a playful “name caller” especially when he’s mad, the foxes think Andrew is “crazy” and incapable of humanity and love because of it. They call his meds “antipsychotics” as an assumption and insult in a derogatory way, when really antipsychotics are a very helpful drug for some people who need them. Even Neil thinks these things about Andrew until he learns to care about him. All the foxes are hypocritical to am extent, as people in real life tend to be. Nora herself doesn’t use these or tweet them or something, her characters do to show aspects of their personality and opinions and how they change over time.

Racism:

As for the racism, I've seen people talk about how racial minorities being antagonists is inherently bad, which I think lacks nuance but overall isn't a harmful statement or belief. However, Nora herself said she wrote in the yakuza instead of another gang or mob because she was inspired for AFTG by sports anime, (which often queer-bait for a variety of reasons). I haven’t seen a textual analysis acknowledging the racist undertones surrounding the Moriyama’s as the few characters of color who are also major antagonists, but instead just “Nora is racist”. Wymack having shitty flame tribal tattoo’s is just… a huge 90’s thing and a part of his character design. Her having a character with bad taste in tattoo trends doesn’t mean she's racist. There is the whole how Nicky is handled thing, but that's a whole thing on it’s own. The fandom… really will write Nicky being all “ai ai muy spicy, jaja imma hit on my white–not annoying like me–boyfriend in Spanish. With my booty hole out and open for him ofc.” and as a Mexican mlm I’m like … damn alright. 

I think there is merit to the fact that she writes white as the default* and unless otherwise stated a POC a character was written with the intent to be white is another valid criticism, as well as the fact that the cast is largely white, but everything Nora is accused of I've seen the fandom do worse. That goes to the debate of, is actively writing stereotypes for POC more harmful than no representation at all? And personally I prefer the lack of established race line that lets me ignore Nora’s canon intent of characters to be white and come up with my own HC’s over the fandoms depictions of “zen monk Renee with dark past” “black best friend Matt who got over drugs but is a puppy dog” “ex stripper black Dan who dates Matt” vague tokenism. I HC many of the upperclassmen as POC and do my best to actively give thought behind it and have their own arcs that also avoids the fandom colorism spectrum of “darkest characters we HC go to the back and fandom favorites are in the front and are the lightest.” 

*I however won't criticize her harsher or more than… everyone else who still largely does this in fanfiction regarding AFTG as well as literature in general. This isn't a Nora thing, it's a societal thing, and considering the books came out in like 2014 I'm not gonna hold her to a higher standard than the rest of the world. She's just someone who wrote her personal OC’s and self-published expecting no following. I don’t know her race and I’m not gonna hold her to a higher standard than everyone else just because. 

The criticisms I've seen have always been… ironic IMO, and clearly I have a lot of thoughts on it. I think most people say those things about Nora because they heard them, and it's the woke thing to say and do and don’t critically analyze their actions or anything, but just accept them. 

[sumpix]

A short story by Kurt Vonnegut ~ Harrison Bergeron,

When it comes to cautionary dystopian tales, most of us know the biggies. Orwell’s 1984 and Animal Farm (the latter proffering up this blog’s name) are the gold standard. Aldous Huxley’s Brave New World is another classic. More contemporary writers have put forth their own dystopias, and translation to visual media has made household names of The Handmaid’s Tale, The Hunger Games, Divergent, and others.

Sometimes, though, the lesser-known tales offer up the most spot-on cautions for a particular cultural moment. A short story by Kurt Vonnegut, Jr., Harrison Bergeron, published in 1961 (and loosely adapted into a TV movie in 1995), shines a stark klieg light on the realities of the rapidly metastasizing “woke” revolution’s obsession with discrimination, inequality, and the “systemic” label. (Story available at. See link below.)

                              https://justpaste.it/61cal

Vonnegut’s “finally equal” society isn’t due to arrive for another 61 years, by his estimation, and the measures taken to “handicap” those attributes that exceeded an obviously low common denominator (everyone was burdened down to the level of the weakest, ugliest, and least intelligent, because elevating the latter beyond their physical limits was not an option) appear positively quaint, given today’s state of technology. While we are not at the point of imposing individualized handicaps (today they’d be called something else, since “handicap” is unwoke/triggering/ableist/whateverthef*** else they make up), we are certainly at the point where success and achievement are considered “oppressions.” California’s legislators are in the process of removing the state’s anti-discrimination language from its constitution, in order to actively discriminate against some identity groups that are more successful in her schools, and all over the country, the premise of “systemic racism,” which posits that any outcome that doesn’t mirror the nation’s demographic statistics is de facto racist, with no room for consideration of personal preferences or other non-identity factors, is driving policy.

Enforced equality of outcome may not manifest in Vonnegut’s specific fashion in our lifetimes, but we are already witnessing the “dumbing down” of social norms and expectations. Today, learned that punctuality (including the wearing of a wristwatch) is considered racist, and the product of a white-European culture of oppression. Good grammar, good diction, and good behavior are also considered euro-patriarchal microaggressions and microassaults (yeah, that’s supposedly a thing, look it up).

Oddly, there is a “white-European” philosophy that denounces exceptionalism: the Danish “Law of Jante,” which tells people to “know their place” and not stand out. Our woke-alists don’t go out of their way to mention that because, I will surmise, they actually do aspire to a form of exceptionalism: that of victimhood. Our cultural war is increasingly a “king of the hill” scramble to establish one’s (ever-more granular) identity-group as more aggrieved than others, and therefore more deserving of cultural (and financial) largesse. They’re also a bit schizophrenic about Denmark, believing its “social democracy” model is proof-of-concept validation of Democratic Socialism, despite the two having almost nothing in common, but needing to be careful not to be too effusive, because Denmark is so blazingly white.

What’s really being decried by our “equality of outcome” woke-alists is the very American spirit of excellence, the independent spirit, the “land of opportunity” entrepreneurialism that made the nation the success it is. In fact, they seem increasingly hell-bent on tearing down success, just as they have been tearing down statues.

In its place, they seek not only to exalt victimhood and offer it as an excuse for every inequality, real or imagined, but establish it as eternal, with no hope of ever achieving Dr. King’s “content of character” parity. And, in this permanency, we find the divergence from Vonnegut’s tale. The goal is not to produce equal outcomes, whether it be by handicapping anyone who stands above a least common denominator or by less blatant means, but to actually obligate them to everyone else. To subordinate them and to take from them both the fruit of their labors and the dignity of their individuality. To “over-tip” the scale toward whoever manages to establish rank in the grievance hierarchy.

As we are now finding with Orwell’s warnings, Vonnegut’s dystopian vision may not have been bleak enough.

[eeee-lye]

So I’ve finished Tempests and Slaughter and ... look, I write long, rambling works more about character development than plot, so when I say there’s not enough plot in this book, the context from where I say it matters.

Pierce has never been a tight plotter. She’s better at it in the Circle universe books, where the structures of events in a single book gives a sense of plot that leads to a more definite conclusion (like Sandry’s destroying the murderers at the end of Magic Steps). Many of her Tortall books, though, involve a sequence of events that occur over a period of time, event after event, finally reaching a conclusion at the end of the series, but often stopping mid-series because it seems like a good spot to wrap up (with some character development to make it stick, with varying degrees of success). We’re just not reading Pierce for plot, and I don’t have a problem with this most of the time.

Tempests and Slaughter has no plot and only a very quick “oh this is a romantic relationship” revelation emotional tie-up at the end (not instigated by Arram). It is solely establishing set up for everything that happens before and during The Immortals. Yes, things happen, but there’s no real conclusion, just a tour through many, many scenes that are depictions of magic and growing up and learning with a lot of foreshadowing but not a lot of things actually happening.

(Some of the foreshadowing is utterly enjoyable for old Pierce fans. It’s fun to see Ozorne and Varice interact with each other and Arram, and Pierce’s showing us Tristan, Gissa and their relationship with the three is really cool.)

The major problem here is that Arram Draper is a character to whom things happen, and, honestly? This never a good protagonist makes. There’s gods talking about how he’s destined for great things (he has a sunbird called Preet, which is basically the equivalent of Alanna/Beka’s Faithful/Pounce) but Arram Draper does almost nothing himself. Gods find him. Teachers make decisions for him. His friends find him. He ends up in situations of tempests and slaughter from the actions and decisions of others. I’m honestly racking my brain for more than one or two instances where Arram decided to do anything without someone else deciding for him or pushing him towards it. He doesn’t instigate adventures, he doesn’t try to investigate a certain mystery himself (most of Pierce’s other characters would have tried to solve it instead of leaving it for the next book). Arram does nothing but let the universe push him around, and since the book tells me so unsubtly that he’s destined for great things, it undermines this message--the telling and the showing don’t match up.

That Arram does little of his own will is why there’s no plot. A proactive character who makes decisions, good and bad, generates their own plot. A character who has his decisions made by others and handed to him does not; you just get a character coasting from scene to scene. There’s not even a great sense of character development--you see Arram learn about magic and observe things about Carthak and Ozorne, but very little about himself. One of the two character arc moments that formed the conclusion was handed to us in the first chapter!

I suspect this is meant to contrast the massive changes that Arram makes to become Numair in the next books, but it leaves Tempests and Slaughter lacking in emotional punch. It’s dull. I was reading just for the foreshadowing, for mentions of Lindhall. I wasn’t reading for the character of Arram Draper, and when compared to every single one of Pierce’s other protagonists, that’s not something I want to say.

I didn’t love Battle Magic, but it’s a much stronger story with an antagonist, a threat, something at stake, and characters who deal with magic and awfulness but don’t walk away unchanged by it. (Plus there’s delightfully polyam and bi Rosethorn.) Tempests and Slaughter doesn’t have a clear antagonist whose actions impact Arram and doesn’t have anything at stake for Arram despite the murder and political doings. It’s the Star Wars prequel trilogy of the Tortall verse.

Under the cut, I’m going to talk in slightly spoilerish fashion about mental illness and the Tasikhe family:

Mental illness has a stronger presence here than in most of Pierce’s books, excepting perhaps The Will of the Empress / Battle Magic / Melting Stones. There’s potions made that seem to be the functional equivalent of antidepressants and antipsychotics, purposefully for mood-lifting and calming. I think this is awesome, generally--I’d love to see more fantasy novels with fantastic treatments for mental illnesses. I’d love to see a fantasy protagonist take a potion every night or morning to manage their symptoms, just like I do.

But. When the only characters seen using these potions are from the Tasikhe family (Ozorne and his mother) and are generally depicted as unstable, racist and violent, and when Ozorne is a damn series antagonist, I have one hell of a problem.

(There’s also the fact that one of the characters giving Ozorne’s potion is Very Clearly Up To No Good, which leaves me wondering if the potion is meant to damage or harm Ozorne long term. That connotation, as it maps to psychiatric meds, is troubling to say the least.)

There are no other characters written as mentally ill in the same way. Arram is clearly ND-coded, written as distractible, narrowly-focused, shy, anxious, awkward--a healer character makes a comment about his mind being a singular place that reads, to me, straight from the autism playbook. Arram, though, isn’t written as unstable in the way Ozorne is, and at no point is Arram’s neurodiversity ever named; at no point is he shown getting support for it. It isn’t treated in the same way as seeing Ozorne being given a potion that settles his depression symptoms enough that he can return to more normal functioning.

Ozorne has some degree of PTSD from his father’s death and depression, specifically seasonal affective disorder, although it’s forgotten about in the later stages of the book. He is a reasonably good depiction of depression earlier on, but also prone to rage and violence towards anyone remotely connected to the ethnicity of the people who killed his father. I’m far too white to speak properly on this, but I’m not liking the approach of giving a racist character a “you people killed my father” backstory justifying his racism. What I can speak on is the fact that we’ve got a mentally ill character who is racist, violent and hateful, and while mental illness never stops one from being racist (and we white mentally-ill folks need to not use mental illness as an excuse) it is dangerous to associate mental illness with violence the way it is in Ozorne and his mother.

People with mental illnesses are more like to be the victims of violence than its perpetrators, yet here we are getting characters who are visibly mentally ill, to the point of needing treatment--one of whom will become an antagonist who does some horrifically terrible things during The Immortals. We’re getting another character, treated similarly to Anakin Skywalker in the Star Wars prequels, who is written as even more obviously and unambiguously mentally ill because it is inconceivable that anyone without mental illness can be a violent, lethal series antagonist, and as a mentally ill person, I am so not okay with this.

This is a carryover from The Immortals, but it is so damn unnecessary. Ozorne did not need to be mentally ill. He didn’t need to be written as a mentally ill character, undergoing the treatment of a mentally ill character. He could have been written as a racist would-be conqueror without any suggestion of mental illness; I don’t believe it would have changed his character arc at all.

Given that Pierce writes YA, and given that she’s written suggestions in the Circle universe of mental illness and its treatment being more normalised (at least with regards to trauma/PTSD), I think she’s done mentally ill teenagers a massive injustice here. Teens with depression and SAD do not need to see a character who has their symptoms and experiences being built up to be a series antagonist who wrecks destruction and violence.

It’s ableism, and given that this is the set up and where Ozorne’s character must go, I’m doubtful it’ll get any less ableist.

[rebelwheelssoapbox]

Tips For Journalists On How To Avoid Ableism

[image description: An artistic graphic with a black background, and various rectangles in blue, pink, orange. To the left is an artsy illustration of a woman wearing a balaclava type hat, with 4 jester-like horns. Her face is teal and it has various shapes in yellow orange, red, pink and lime green. Behind her is a white circle with a lime green rectangle on top. The text (which is narrow and white) reads “Tips for journalists for avoiding ableism” . There is a narrow red exclamation mark to the right of the text ]

It is rare at best that disabled people are represented in the media, and unfortunately when we are, it’s often done in an ableist fashion. Ableist? Just as when an action is rooted in racism, it is (or should be) referred to as racist, when a particular behavior is rooted in ableism, it should be referred to as ableist. What’s ableism?

[image description: The graphic has a white background and black “typewriter” font text. It reads, ”Ableism is… (a form of) discrimination. The false idea that disabled people are by default, inferior. When in truth, disability is just another way for a mind and/or body to be.” To the left are two black circles, and in the lower left hand corner, is the url for the outreach site in a small black font] (For more information, check out: whatisableism.tumblr.com ) It is important that the modern journalist is aware of ableism (social & systemic), not only so they can properly cover a disability related story, but also so that they don’t contribute to the oppression of disabled people by perpetuating harmful stereotypes and information. The following is a list of 11 Tips for The Modern Journalist. 1.) When covering a story involving discrimination against a disabled person, call it what it is - ableism. When Trump did the infamous “mocking” of “the disabled reporter”, the media referred to it as if he was just being mean, when in truth, it was discrimination and more specifically - ableism. Which brings us to tip #2 2.) Include the disabled person’s name (unless asked not to) So often, when the media reported on “the disabled reporter”, they neglected to mention that he has a name. But instead of Serge Kovaleski being portrayed as the established writer/reporter that he is, often he was portrayed as “the poor disabled reporter” #sadface.

[image description: A photo of Serge Kovaleski wearing a t-shirt and scarf. He is smiling and standing in front of a painting. His disability is visible in one of his arms and hand.]

3.) Disabled people are in the struggle too. You’d never know that, the way the media focused on the tale of “the poor disabled reporter.” Much of the media made it like this was the worst thing to happen to disabled people during the election (without actually asking the community if that was the case.) If they had, they would know that Trump’s behavior was hardly new nor rare, since many disabled people face discrimination on a daily basis. Meanwhile, much of the media failed to cover the story, that many disabled people were already struggling just to get the basics, and things were about to get a lot worse. The truth is the disability community is an oppressed demographic in their own right. That being said, there are also disabled immigrants, disabled people of color, disabled Muslims, disabled LGBTQ+, etc, and yet disabled folk were often left out of these stories. 4.) When covering a disability related topic, make sure to always interview actual disabled people, not just the parents, caregivers and doctors etc. After all, a parent of a disabled person can only know the perspective of being a parent of a disabled child and advocate. One can never know what it’s actually like to be disabled, unless you are disabled. If the disabled person is unable to communicate, (or just lacks the proper accommodations that would allow them to communicate), then the next appropriate step would be, to interview someone in the disability community.

That being said, the following is a list of people in the disability community that are available to speak to the media.

5.) If you are writing about a disabled person, it is important to be aware of the language used in regard to their disability. As an example, if you are writing about a disabled person named Joe who has cerebral palsy, saying that “Joe suffers from cerebral palsy” (unless those are Joe’s exact words.) is inappropriate. The statement is assuming that disabled by default = tragic. “Joe has cerebral palsy” is a more neutral and non-ableist way of phrasing it, as the latter is factual, but is not automatically portraying disability as a negative, nor assuming how Joe feels on the topic. 6.) When a disabled person is murdered by their parent (or another family member), it is common for the media to portray the murderer with sympathy and the disabled person as a burden. This is incredibly dangerous as it excuses ableist violence. Disabled people are not better off dead. And while being a parent (if applicable) can be challenging, there is no valid excuse for murdering your own child. Disability should never be offered as a justification. For more info check out #DDOM2017 (Disability Day Of Mourning) 7.) Avoid using ableist language such as the word “Lame”. Lame refers to a mobility related disability, but also means “weak and inferior”. This is an example of how ableism is embedded into our society and everyday language. (Related: a list of ableist language) 8.) Refrain from portraying disability related accommodations and accessibility as unfair burdens to businesses. The ADA law is not a special favor. It’s the law. Sadly, unlike food and fire safety laws which are enforced by inspectors, the ADA law is typically left to the disabled consumer to enforce. A point that Anderson Cooper’s story on the so-called “epidemic” of drive by lawsuits unfortunately missed. Instead he focused on how “unfair” it was to businesses who were being sued for not being up to code. He also neglected to report on what it’s like when you lack access to the majority of businesses and homes, due to inaccessibility. Disabled customers should not have to educate the business owners, in the same way that it should not be left to the customer to educate the owner of a supermarket on food safety. Yet none of these points were made.

9.) Always include image descriptions and make sure that your videos are closed captioned. Image descriptions (and you can see examples of this under the images in this article), are vital for people who can not see the image and thus rely on a text description (which is read by text to voice software and/or another person.) The image description should at the very least, give the gist of what is happening in the image, including text. Adding proper closed captions to your videos is very important, for people who are Deaf and/or HoH (hard of hearing) and rely on text captions to know what is being said in the video. 10.) Avoid portraying disabled people as inspiring (in the ableist sense). In the beginning of this article, we talked about how according to ableism, disability =’s tragic #sadface. One (false) message that is often perpetuated regarding disability is that the only chance of happiness, that a disabled person has, is to be cured of their disability or death.

Because of this, often when a disabled person does something as ordinary as getting food at the market, it’s often viewed as brave and courageous. #GodBless In these situations, it’s inspiring, but only in the ableist sense. How can you tell the difference between what is validly inspiring and what is just ableism? If an able bodied person went to the market to get food, would people still find it impressive and moving? No. 11.) And the last tip, is that when doing a story on a person in the disability community, ask how they identify. For an example, some people in the disability community identify as a PWD (or person with a disability), while others identify as disabled. Some might identify as chronically ill, or even a “spoonie” (which is a term that is used when a person has low spoons or energy). Some people like Serge Kovaleski do not identify as disabled at all. Never assume how a person identifies and refrain from referring to them (by default) as “differently abled” (which many people within the community find offensive.)

That being said, this is far from being a complete list of tips. Check out whatisableism.tumblr.com for more information on how to avoid ableist language and behavior. (For tips that are specific to the Deaf/Hard-Of-Hearing communities, click here ) In the end, remember that disabled people are full fledged human beings who do not exist for people’s pity, disdain nor to inspire the non-disabled audience. We exist for ourselves. (related: Stella Young’s Ted Talk “Not Your Inspiration)

Are you disabled and have some tips that were not on this list? Are you a journalist who has questions? Click here to contact the site. This article was originally published in whatisableism.tumblr.com

[dapperandwoke-blog]

Dapper and Woke Spotlight: Ace Ratcliff, Activist and Model

(Image: Ace stands on a beach facing the camera in a sheer gray dress with embroidered flowers and a headdress resembling deer antlers. Photo by Lance Gibson)

Dapper and Woke endeavors to examine style and fashion from all different perspectives, which was why I was so happy to find the #DisabledandCute tag on tumblr a few months ago, showcasing people with disabilities loving their bodies and showing themselves off without shame. I wanted to talk with some of the people posting in the tag, so luckily I got a chance to chat with Ace Ratcliff, aka @mortuaryreport, to talk a little bit about living with a disability and learning to love your body and your look. More after the break!

D&W: First, some basic biographical information, whatever you feel comfortable with: Full name if you want, age, place of residence, day job?

My name is Heather Ace Ratcliff; I’m 30 years old, and I live in Oakland, California. I’m currently a junior tech writer for a software company in the South Bay. Prior to this job, I worked in the cannabis industry and prior to that job, I was a mortician.

D&W: Ah, so that’s where the name of your blog comes from! I found you from browsing the #DisabledandCute tag on Tumblr and loved your photos. For those who don’t know you, you have Ehlers-Danlos syndrome, which is a genetic disorder, but do its effects manifest immediately from birth? Where was the point growing up that you began to conceive of yourself as being a differently-bodied person? Was it something you realized on your own or was it caused by other people?

Ehlers-Danlos Syndrome is a degenerative disease that causes the body to create mutated DNA at a cellular level. Many of us know that collagen is in the skin, but what lots of people don’t know is that collagen is an integral part of constructing all of the human body! 85% of the body’s systems have collagen in them. Collagen is like the building block of the body - it’s also the mortar holding the building blocks together. Because it’s a genetic disease, there’s no cure for it. The disease manifests differently depending on the human (and the type of Ehlers-Danlos Syndrome you’re diagnosed with.) The type I have is called hypermobile Ehlers-Danlos Syndrome (hEDS). Although I have a number of co-morbidities (simultaneous chronic illnesses) to go along with my hEDS, the primary symptom of the hEDS is that my joints dislocate and subluxate (partially dislocate) at random.

Looking back at my medical history, I realize now that the symptoms of my hEDS did manifest from an incredibly young age: I had eye surgery as a toddler, I had pituitary growth hormone deficiency as a young adult, and major growing pains. My back pain started when I was 16 or 17. With hEDS, the symptoms can often be seen as a boon when people are young: I was very flexible, which was useful when I was learning karate; my skin is velvety soft.

I started searching for a solution to my chronic back pain when I was 18 or so. I didn’t get a diagnosis of hEDS until I was 27 years old, which means I spent about a decade trying to figure out what was wrong with me. Statistically, I actually beat the curve: most patients take many more years to discover they have EDS. I began the slow process of identifying as disabled as I began to understand my diagnosis and the effect hEDS would have on the rest of my life. Settling into my identity as a disabled person felt more natural as I began having surgery, managing hEDS, and using accessibility devices such as my cane and my wheelchair.

 (Image: Ace riding her wheelchair in jeans and a white tanktop showing off the tattoos covering her arm from shoulder to elbow. Photo by Sean Alonso of 1 Shot Photography.)

D&W: Was there a moment where you consciously switched from just identifying as disabled to being an activist for disabled rights?

I can’t think of an exact moment when I decided to become a disability rights activist; it was a slow evolution from my diagnosis as I began to face the realities of an ableist world that not only wasn’t designed for disabled people, but actively tried to exclude us from existing equally. My privilege as someone who was non-disabled (and had primarily non-disabled friends) means this was a whole new side of the world that I not only hadn’t interacted with before, but didn’t even know existed.

D&W: So as an activist, what do you think is the biggest failing in able-bodied activist circles when dealing with people with disabilities? Do you feel like you've noticed any change over your life how people treat ability as an intersectional axis of privilege and oppression along with race, class, gender, etc? For better or for worse?

I can tell you without qualms that the biggest issue in any kind of activism is the exclusion of the disabled experience. Well known activists regularly exclude disability. Marches exclude disability. Feminists exclude disability. It often feels like everybody excludes disability except for disability activists - which makes no sense, because the experience of disability does not differentiate based on race, gender, income, sex, anything. ANYONE can be disabled, anyone can become disabled, at any time. Disabled humans make up 20% of the American population and 15% of the world population. We’re a huge community that encompasses everyone and can affect huge change and… nada. Of course, you can argue that there’s been noticeable change in how disability is treated given the establishment of the Americans with Disabilities Act in 1990 (ADA), but that was a very baby step, believe it or not. The ADA is frequently not enforced and not punished for a lack of enforcement. Generally speaking, we’re still very much an ignored minority.

D&W: Tell us about your personal favorite modes of activism and how other people with disabilities may find ways to get more socially engaged.

I think one of the things that’s really underrated in non-disabled circles is activism on social media. So many people denigrate it as “slacktivism,” but the truth of the matter is that not everyone can get out there and march, so being at home, writing, talking, calling - everything you can do from the comfort of your own living room is really important and does make a difference. If you can take photographs of your experience, boom, post it. If you can write blog posts about your experiences, make it happen. If you can make calls, pitch articles, whatever! Getting our voices out there and heard is the important part, it doesn’t matter where we’re doing it from!

D&W: One of the great things about the #DisabledandCute hashtag is the message that all bodies are worthy of being loved by themselves and by others. You look fantastic, by the way. What are things that help you love your body? What are some self-care rituals that you have?

Thank you! This is a tough one for me, because I have a very split relationship with my body (which I call my “meatcage”). I deal with chronic pain, chronic fatigue, chronic insomnia, chronic syncope (passing out), you name it and it seems like my body does it. One of the things that’s been extraordinarily helpful for me has been getting tattooed.

(Image: Ace reclines on a rock crag in a black dress with sheer top and opaque skirt and black wedge heels. The tattoos covering most of her right leg are plainly visible.)

D&W: Why getting tattooed in particular? Does putting your own design on the "meatcage" help you feel in control of it?

I always knew growing up that I was someone who wanted to be tattooed. For years, I told my mom that I was skipping school on my 18th birthday and spending the day at a tattoo studio. (She did not believe me and it was a major argument when I came home that afternoon with a new tattoo - the Rebel Starbird, the symbol for the Rebel Alliance from Star Wars.) At the time, before my diagnosis, I just enjoyed getting tattooed because I loved the way it looked.

After my chronic pain started really ratcheting up in my early 20s, getting tattooed quickly became a coping mechanism. The pain from EDS was consuming and exhausting, and I didn’t have a medical reason for any of it. All of the doctors I saw thought I was either exaggerating or a hypochondriac. Getting tattooed quickly became a way to experience pain that was within my control. I got to choose when I would hurt. I got to decide when it would start and when it would stop. Even better, at the end, I had something beautiful as a result of my pain. EDS didn’t leave me with anything but surgical scars; getting tattooed left me with art.

Eventually, I discovered that getting tattooed also seemed to “re-set” my pain levels. Sitting for a session sent a wave of neurochemicals that left me in a happy cloud immediately after the session, but getting work done for long enough seemed to “interrupt” long cycles of pain, as if the pain were hitting a wall.

I have a severe sense of dysphoria in relation to my body. I am trapped in a cage that I have no control over. More days than not, I hate it. I have long, complicated daydreams about having my left foot amputated. Getting tattooed not only helps me feel a sense of control over my pain, but it makes the cage I’m trapped in feel like something that belongs to me instead.

D&W: Which is your favorite tattoo?

My favorite tattoo depends on the day, but last year I got my dogs tattooed on me as saints. One of my dogs, Harper, died of congestive heart failure last month, and I have a big piece of her where she’s Joan of (b)Arc - laurel crown, armor, spear, all of it. It’s been really comforting to look down at her every time I miss her and feel like I’ve still got her with me! (Those tattoos were done by Kristina Benett at Sugar City Tattoo in Crockett, CA)

(Image: Ace’s left arm showing multiple dog tattoos as described above as well as a tattoo that reads “WE ARE CANCELLING THE APOCALYPSE,” a quote from Pacific Rim)

D&W: One of the main focuses of our blog is clothing, and making style and fashion accessible to many different people. What difficulties do you have, if any, with clothing that is designed for able-bodied people? Are you aware of any fashion brands that try to cater to people with disabilities? We're trying to find out ourselves so we can give them more exposure!

I know there have been a few companies out there trying to make clothing for wheelchair users, but the ones I’m familiar with have been shut down. Clothing that’s designed for non-disabled humans definitely doesn’t focus on the things I need: my skin actually bruises when seams are too tight or too noticeable, so soft fabrics and gentle seams are a must. My joints are constantly in flux, so pulling clothes over my head can sometimes be next to impossible. Also, you really don’t realize how not made for wheeling many outfits are until your jacket is stuck in the spokes of your tires! All of these things would be huge improvements!

 (Image: Ace’s jean jacket covered in various buttons, including a Black Lives Matter, “Fuck Trump” and a marijuana leaf. Photo by Sean Alonso, 1 Shot Photography)

D&W: Tell me about your favorite outfit and when you feel you're at your cutest or most powerful/proud, and what about said outfit makes you feel as such.

My favorite outfit changes completely depending on the weather and the mood I’m in. Lately, my favorite piece of clothing has been a BDU camo jacket I picked up from a military surplus store. I’m all about jackets - I have a jean jacket covered in pins and patches that’s my other favorite - you can see it in some of the pictures I sent along (above). I feel my best when I’m wearing something comfortable that I LOVE, when I have my eyebrows on, and when my tattoos aren’t covered up! For me, looking good and feeling good are all about being comfortable in my own skin.

D&W: Who are some other disabled models/style icons you take as inspiration and/or want our readers to know about?

On Instagram, I adore Rebekah Taussig (@sittingpretty). Also on IG and Twitter is Karolyn Gehrig (@karolynprg). Leigh (@leighdollface on IG), Sam de Leve is awesome (@ChaiKovsky on Twitter), @StormyEnt on Twitter, Esme Wang (@esmewwang on Instagram), Michelle Roger (@michelle_roger on IG) .... The list goes on forever and I know I’ve missed way too many humans, so basically just hop onto my Insta or Twitter and check out who I’m following!

(Image: Ace stands in front of a white brick wall in a white corset, black briefs, and black calf-length boots carrying a bottle of wine in one hand and dropping a black jacket in the other)

 You can find Ace on Twitter, Instagram, and on her website www.mortuaryreport.com