#an essay on their inherent ableism is not something I have the time to write but man I could | Explore Tumblr Posts and Blogs

doctorbunny · 3 years

Text

MILGRAM theory time: Haruka!

This isn't going to go super in depth (famous last words) but there's a few heavily debated parts of Haruka's MV I want to share my findings/thoughts on because I think this is my new special interest and during my quest to get best boy's song to 1 million views I have been looking over his first MV with a fine tooth comb so to speak.

Disclaimer: As the Jackalope said in the "This is the MILGRAM" trailer, we don't necessarily know everyone's crime from just the first video, its possible that a lot of things will be re-contextualized in the second MV, however I am not psychic or bilingual and thus will only be working with content released before August 20th 2021 and translated into English (which could cause some language/cultural details to be lost on me as translation is not a 1 to 1 process).

TW for discussions of ableism, child abuse, murder and animal death. Also this is really long so sorry to all the people that follow me for non-MILGRAM stuff

Firstly, I want to start on the topic of Haruka as a person. He is disabled. He does not have 'the mind of a child' (although he is 17, making him legally a minor in both North America and Japan). He is not just 'child-like'. And he is not mentally ill (well he might be, in the sense that many disabilities like Haruka's have strong comorbidities [where a person has two or more conditions but neither directly causes the other] with anxiety, depression and PTSD, but usually when I see people talk about him 'struggling with mental illness' they go on to refer to aspects of his disability). Sometimes on tumblr, people like myself, will see canonical traits written into a character and identify them as being traits associated with our disabilities/mental illness and headcanon them as such. Sometimes this even involves saying things like "It's basically canon!" Although we understand that these characters were probably not the result of a writer intending to write a disabled person. When I say that Haruka is being written as a person with a neurodevelopmental disability, I mean the writer intended to write a disabled character and wrote them in a way that they wanted the audience to pick up on. As an autistic person (which is one of many neurodevelopmental disorders and also something I probably didn't have to specify because who else would be writing an essay about a series they got into a few days ago at 11 o'clock at night) I really like how Haruka has been written so far. There's definitely some parts of him that have been exaggerated so abled normies can pick up on his disability (namely how his MV 's main motif is really child-like drawings) but the writers also included a lot of smaller details I appreciate like how it is noted he avoids eye contact when talking to other people and is depicted as nervously pulling at his sleeves in official artwork, or how he says he finds his prison uniform (which has tight straps) 'relaxing' and when he gets nervous/tense, he will dig his fingernails into the palm of his hands. (These last two potential being examples of 'self stimulation' [aka stimming] where a person seeks out specific sensory stimuli in order to help regulate their nervous system/emotions, in this case the tight uniform creates a comforting, secure feeling [you may have heard about some people preferring to sleep under weighted blankets for this reason] and digging nails into his palms sounds uncomfortable/painful but is done in an attempt to deal with a greater sensory discomfort caused by the situation/environment) I also appreciate the depth he is written with, he struggles to communicate verbally but in his MV and interactions with other inmates is shown to have insecurities, opinions and a consistent thought process (this is all basic character stuff but unfortunately not always present in disabled characters)

Also I want to add that (in terms of what we've been shown so far) Haruka did not kill anyone because of his disability/mental illness. Disabled people are not inherently more innocent than abled people. But there is no disability/mental illness where a symptom is that you kill people and real people have to live with the stigma when you speak carelessly and suggest things like "Haruka is the kind of mentally ill person who kills people as a cry for help" 🧂 (or at the very least real people have to read BS like that and cringe). TL;DR Haruka is less child-like and more onion-like (as in, he has layers) 🧅🧅🧅

Now is the actual theory stuff, oops:

Every prisoner in MILGRAM is supposed to have committed murder in some way, obviously considering Yuno just had an abortion (which i personally do not consider an act of murder) whilst Mu literally stabbed someone to death, this definition is stretched a bit. But it is not agreed upon yet who Haruka killed/how many people he killed or why he killed.

In his MV he is shown to have chased after his dog into a forest, seen something off-screen, then beaten something into a messy pulp with a rock. Some people think the dog is a red herring and that Haruka actually killed his mother/the girl from the fireworks show/his brother. I do not agree.

First: I believe Haruka when he says he doesn't have a brother. The MV literally starts by Haruka looking in the mirror and then switching between the him now

and a really similar looking younger child who just so happened to be a key feature of his memories (I don't have the vocabulary to explain it but its like cinematic parallels that establish this is the same person at different points of their life)

Its not impossible that this is Haruka's secret younger brother, but i think its unlikely. I saw someone saying they had to be different people because Haruka looks less happy than the child but like, most 17 year olds are less visibly happy than when they were 7 (or however old the child is meant to be). Life happens.

So when Haruka is shown pushing the child around and eventually strangling him, this isn't meant to be literal (homicide or suicide), but a representation of how conflicted Haruka feels about his younger self, who may have committed the murder (if you've ever been kept awake cringing at memories of something you said in the past and wishing you could go slap some sense into your former self, this is like that but 10 times more self loathing). The lyric "I am always repeating yesterday," implies he might think about this specific past event a lot.

Moving on, its pretty well accepted that Haruka's parents were abusive in some way and Haruka internalised a lot of it: he constantly apologises, he says in his interrogation questions that his one wish come true is that "[he] want[s] to be loved" and describes in his MV how when he couldn't find the words he was looking for ("you're unfair") one of his parents "would get angry at me and say “You’re hopeless.”". He seems to know its unfair but also still says he 'loves' his family, possibly mistakenly believing it is his fault, but also showing an awareness of his situation (and how his parents might behave).

Now, the MV is stylised in a way that makes certain details unclear, but there is one clear detail showing that Haruka's dog was killed

This is the first close up of Haruka and the dog. Haruka's mother is just out of frame supervising, but they look pretty happy. Notice how the puppy has a silvery chain for a collar. Somehow, this dog gets out of the house but only Haruka is shown chasing after it (whether his mother was searching elsewhere or didn't bother following her disabled son into the forest is unclear). Either way, young Haruka is now in the forest, unsupervised.

By the time he finds the dog, there is already blood, suggesting it was initally attacked by something else.

is this a sigh of relief from a boy whose finally found his beloved pet or a jealous weakling glad that nature took its course and he is finally free of that meddling mutt stealing all his mummy's attention? /j

I think this shock at the discovery that 'there is blood on his hands' could imply that rather than literally getting the blood from his dog, Haruka has seen his already injured dog and realises that if the dog got out because of him (he is previously shown to be aware his parents seem to blame him for everything) then he is the reason his dog is injured/dying and will be blamed for it. (this scene plays over the lyrics "It’s fine, though it’s really not It’s really fine, though I don’t really think so When I tried to understand it, You’ll make that disappointed face again" suggesting he is trying to avoid making his parents disappointed and letting the family pet escape into danger is something that could make them very disappointed)

now we get into rock murder (this is present-day Haruka implying that this is either: not how the scene really played out; the writers really wanting the audience to know that this was Haruka's doing and not someone else's; or this turns into a separate incident that happened much later [although note that the red sky and blue moon is the same as when young Haruka first appears at the start])

b the corpse is beyond mangled now, but its clearly the dog because the silver chain collar is still there, to the right of the body. (circled in red for your convenience :3)

My hypothesis is: Haruka didn't set out to kill his dog, but upon finding it injured (we don't know the severity aside from bleeding and also it not being able to run away from Haruka kneeling down above it w/ a big rock so it could range from treatable with a lot of vet help to already on death's door, TBH I don't think Haruka would know the difference) He knew he'd be blamed for this; made into a villain who let the poor puppy come to harm. He panicked and killed the dog out of some idea that it would make him the victim here (since he'd be found crying over a dog corpse, which might make a parent go comfort him rather than getting angry about what could've happened to the dog). This is over the lyrics: "I cried, I screamed I wanted to be a pitied and loved weakling I was in denial, I was in denial I just had to make sure I’ve become a victim, I’ve become a victim" (there's another theory that he was also jealous of the dog, which could work here too, since this is not some calculated plot; rather its a rash decision) This ties in with his Japanese song title (translated as Weakness) which is a play on a phrase sort of like "The strong eat, the weak do not" to become "The weak are eaten by society" or "The weak eat each other to survive" [once again I am reminding everyone this is based on second hand information from the youtube comments section (from users mitchki and Alphaistic) because I do not speak Japanese] This second meaning (The weak eat each other to survive) makes sense under the reading that Haruka killed his dog in order to 'survive' making his parents disappointed for the dog escaping.

Miscellaneous points:

We don't know where Haruka's necklace came from yet, it must be a gift since the most expensive thing he's ever bought was cotton candy. The younger child in the video isn't wearing it and neither is his mother or the girl in the purple dress.

Haruka's home seems quite big, at the start we can see a large flower garden outside the window and there's a forest in walking distance. This might suggest his family is quite wealthy

Haruka probably did go to school at some point as homeschooling is not a legally accepted as an alternative to public schools in Japan. (However it is estimated that up to 5000 families homeschool, this is uncommon) A lot (about 62%) of Japanese schools apparently have a 'special needs' classes and there are about 505 schools focused on educating intellectually disabled students (although I do not know which sort Haruka would've needed as whilst intellectual and development disabilities can be comorbid they aren't the same). Now, if children aged 7-14 don't go to school, their parents receive a fine, but its possible that if Haruka's parents are wealthy, they just paid it to avoid sending him to school. (This might imply they wanted to hide him or were generally ashamed of him in some way) However high school education (for students over 14) is not legally required and its likely that even if Haruka went to elementary/middle school, he hasn't been around people his own age in at least 3 years. As he seems quite lonely and glad that the other prisoners give him attention.

I don't think Haruka's parents are divorced and if they are, its not his father who left. Haruka mentions in the 30 questions that he thinks he disappointed his father. But still includes him as part of his family ("My father and mother and me"). A theory I've seen is that his father was disappointed by his son being disabled and left. but developmental disabilities (especially in non verbal and semi verbal children like Haruka) can be diagnosed before the age of 3, so I feel it is unlikely that Haruka would bring up his father if he left that early in Haruka's life

All MILGRAM prisoners have covered one of DECO*27's older vocaloid songs (DECO*27 is a well known producer who composes the music for MILGRAM) Haruka covered 'Two Breaths Walking' (https://youtu.be/puXLfVWrz2Q) which is about a boy's first relationship and how his mother's jealousy set him up for failure as the relationship becomes toxic (specifically it has some very funny out of context lines like "Whose breasts are you sucking on now?") so yeah, mommy issues: the song (Also: some people say in the song, the boy kills the girl at the end, but this isn't literal, TBW is the first of a trilogy of songs about the same relationship, it is followed by Android girl then Two Breaths Walking: Reloaded and the story resolves with the couple reuniting as adults and getting in the relationship again, although its not necessarily as abusive as before, its still implied to be codependant ending on the line 'We should live like oxygen tanks, sucking breathe from the words each of us exhale, until our last breathe')

In all seriousness, the scene where younger Haruka is walking through the city with his mother but it keeps repeating until older Haruka pulls the younger one away might indicate an attempt to focus the happier memories of his parents (since this is also over the lyrics "Why is it breaking? Tell me why? Please don’t change If I tried and couldn’t say it, You would get angry at me and say “You’re hopeless.”" which depict a worse scene) I think both his parents are still physically present but have become far more emotionally distant, not giving him as much attention, which exacerbates his loneliness from not having any friends his own age to talk to

And if one of his parents did leave? I think its likely his mother since she is shown disappearing out of his reach after the dog-incident (inferring she got angry/disappointed in Haruka anyway) This could also be where he got his necklace from: Its something his mother used to wear (although this is 100% a guess) and that's why its shown to be important to him

This one is just me, but i didn't realise until a rewatch that when Haruka is watching the younger him and the girl running together, the background has fireworks. Haruka mentions fireworks being a key memory to him so I wonder if this was one of the first/last times he got to make a friend...

On three separate occasions in the interrogation, Haruka mentions not liking animals. Despite this, he is depicted as sleeping with a rabbit plush and on his birthday art (I'd include that too but tumblr only allows 10 pictures per post, so here's a link) he is standing next to a giant blueberry and strawberry cake with two bunny themed biscuits at the side. Through my experiences of seeing Japanese fandom art on pixiv, sometimes rabbits are used to insinuate a character is cute and timid in fanart.

Meaningless details: Haruka sleeps with his necklace on; he sleeps on a bed and not a futon; at first I thought he woke up holding his plush's hand but his hand is merely next to the toy; and considering the state of the pillow and blanket, I wonder if he moves a lot in his sleep or if the is just because in this case he seems to be waking up from a nightmare about the dog incident...

Final note: I've spent so many hours writing this I don't remember if i was building up to any big finale or not but I hope you enjoyed reading this! Feel free to add on in the comments/reblogs.

#haruka sakurai #milgram #milgram theory #001 #text post #essay #long post

66 notes · View notes

aro-comics · 3 years

Text

Fashion Analysis (Part 2: Outside of Amatonormativity Alone)

[Note: This post is a part of a series analyzing self-expression, fashion, aromanticism, and how they interact with other parts of identity. For full context please read the whole thing!]

Outside of Amatonormativity Alone: Sexism, Homophobia (and/or Transphobia), Racism, Ableism, and Other Factors That can Impact Self Expression

My comic was originally meant to be a light hearted joke. I’d always been told I’d want to dress up one day, be pretty and feminine once I fell in love with a boy (BLEGH). I was so certain that I would never do that, and now … here we are. I put lots of effort into my appearance, present feminine, all in the hopes I’ll impress a very special someone - a potential employer at a networking event. I think there’s a certain irony to all of this, and I do find it funny that I managed to both be wrong and completely subvert amatonormative stereotypes!

But having the chance to think about the whole situation, I realize now that my changes in presentation reflect far more. The pressure I felt to dress differently are still influenced by fundamental forms of discrimination in society, and I would be remiss to not address these inherent factors that were tied with my experiences alongside my aromanticism. So in this section, I will briefly cover some of these factors and summarize how they can influence people’s self expression as a whole, before discussing my own experiences and how these factors all intersect.

Sexism

The pressure on women In This Society to uphold arbitrary norms is ever present and often harmful, and while I wish I had the time to discuss the impacts of every influence the patriarchy has on personal expression, to even try to cover a fraction of it would be impractical at best for this essay. Instead, since the original comic focuses on professionalism and presentation, this is what I will talk about here.

Beauty standards are a specific manifestation of sexism that have a deep impact on how people perceive women. It’s a complicated subject that’s also tied with factors like capitalism, white supremacy, classism, and more, but to summarize the main sentiment: Women are expected to be beautiful. Or at least, conform to the expectations of “feminine” “beauty” as ascribed by the culture at large.

They also tend to be considered exclusively as this idea that "women need to be beautiful to secure their romantic prospects, which subsequently determines their worth as human beings. The problematic implications of this sentiment have been called out time and time again (and rightfully so), however there is an often overlooked second problematic element to beauty standards, as stated in the quote below:

“Beauty standards are the individual qualifications women are expected to meet in order to embody the “feminine beauty ideal” and thus, succeed personally and professionally”

- Jessica DeFino. (Source 1)

… To succeed personally, and professionally.

The “Ugly Duckling Transformation” by Mina Le (Source 2) is a great video essay that covers the topic of conforming to beauty standards through the common “glow up” trope present in many (female focused) films from the early 2000s.

“In most of these movies, the [main character] is a nice person, but is bullied or ignored because of her looks.”

Mina Le, (timestamp 4:02-4:06)

Generally, by whatever plot device necessary, the ugly duckling will adopt a new “improved” presentation that includes makeup, a new haircut, and a new wardrobe. While it is not inherently problematic for a woman to be shown changing to embrace more feminine traits, there are a few problems with how the outcomes of these transformations are always depicted and what they imply. For starters, this transformation is shown to be the key that grants the protagonist her wishes and gives her confidence and better treatment by her peers. What this is essentially saying is that women are also expected to follow beauty standards to be treated well in general, not only in a romantic context, and deviation from these norms leads to the consequences of being ostracized.

The other problematic element of how these transformations are portrayed are the fact that generally the ONLY kind of change that is depicted in popular media is one in the more feminine direction. Shanspeare, another video essayist on YouTube, investigates this phenomenon in more detail in “the tomboy figure, gender expression, and the media that portrays them” (Source 4). In this video, Shaniya explains that “tomboy” characters are only ever portrayed as children - which doesn’t make any sense at face value, considering that there ARE plenty of masculine adult women in real life. But through the course of the video (and I would highly recommend giving it a watch! It is very good), it becomes evident that the “maturity” aspect of coming of age movies inherently tie the idea of growth with “learning” to become more feminine. Because of the prevalence of these storylines (as few mainstream plots will celebrate a woman becoming more masculine and embracing gender nonconformity) it becomes clear that femininity is fundamentally associated with maturity. It also implies that masculinity in women is not only not preferred, it is unacceptable to be considered mature. Both of these sentiments are ones that should be questioned, too.

Overall, I think it is clear that these physical presentation expectations, even if not as restrictive as historical dress codes for women have been, are still inherently sexist (not to mention harmful by also influencing people to have poor self image and subsequent mental health disorders). Nobody should have to dress in conformity with gender norms to be considered “acceptable”, not only desirable, which leads us to the second part of this section.

Homophobia (and/or Transphobia)

So what happens when women don’t adhere to social expectations of femininity? (Or in general, someone chooses to present in a way that challenges the gender binary and their AGAB, but for the sake of simplicity I will discuss it from my particular lens as a cis woman who is pansexual).

There are a lot of nuances, of course, to whether it’s right that straying from femininity as a woman (or someone assumed to be a woman) will automatically get read a certain way by society. But like it or not, right or not, if you look butch many people WILL see you as either gay, (or trans-masculine, which either way is not a cishet woman). This is tied to the fact that masculinity is something historically associated with being WLW (something we will discuss later).

This association of breaking gender norms in methods of dress with being perceived as a member of the LGBTQ+ community has an influence on how people may choose to express themselves, because LGBTQ+ discrimination is very real, and it can be very dangerous in many parts of the world.

I think it’s very easy to write off claims in particular that women are pressured into dressing femininely when it is safer to do so in your area; but I really want to remind everyone that not everyone has the luxury of presenting in a gender non-conforming way. This pressure to conform does exist in many parts of the world, and can be lethal when challenged.

And even if you’re not in an extremely anti-LGBTQ+ environment/places that are considered “progressive” (like Canada), there are still numerous microagressions/non-lethal forms of discrimination that are just as widespread. According to Statistics Canada in 2019:

Close to half (47%) of students at Canadian postsecondary institutions witnessed or experienced discrimination on the basis of gender, gender identity or sexual orientation (including actual or perceived gender, gender identity or sexual orientation).

(Source 3)

Fundamentally this additional pressure that exists when one chooses to deviate from gender norms is one that can not be ignored in the conversation when it comes to how people may choose to express themselves visually, and I believe the impacts that this factor has and how it interacts with the other factors discussed should be considered.

Neurodivergence (In general):

In general, beauty standards/expectations for how a “mature” adult should dress can often include clothing that creates sensory issues for many autistic people. A thread on the National Austistic Forum (Source 6) contains a discussion where different austistic people describe their struggles with formal dress codes and the discomfort of being forced to wear stiff/restrictive clothing, especially when these dress codes have no practical purpose for the work they perform. If you’re interested in learning more on this subject, the Autisticats also has a thread on how school dress codes specifically can be harmful to Autistic people (Source 7).

In addition to potentially dressing differently (which as we have already covered can be a point of contention in one’s perception and reception by society as a whole), neurodivergence is another layer of identity that tends to be infantilized. Eden from the Autsticats has detailed their experiences with this in source 5.

Both of these factors can provide a degree of influence on how people choose to express themselves and/or how they may be perceived by society, and are important facets of a diverse and thoughtful exploration of the ways self-expression can be impacted by identity.

Also, while on this topic, I just want to take a chance to highlight the fact that we should question what is considered “appropriate”, especially “professionally appropriate”, because the “traditional” definitions of these have historically been used to discriminate against minorities. Much of what gets defined as “unprofessional” or otherwise “inappropriate” has racist implications - as an example, there is a history of black hairstyles being subjected to discriminatory regulation. Other sources I have provided at the end of this document (8 and 9) list examples of these instances.

Racism (being Chinese, specifically in this case):

For this section, I won’t be going into much depth at all, because I actually have a more detailed comic on this subject lined up.

So basically, if you were not aware, East Asian (EA) people tend to be infantilized and viewed as more childish (Source 10). In particular, unless an EA woman is super outgoing and promiscuous (the “Asian Bad Girl” stereotype, see Source 10), IN MY OPINION AND EXPERIENCE it’s easy to be type casted as the other end of the spectrum: the quiet, boring nerd. On top of this too, I’ve had experiences with talking to other EA/SEA people - where they themselves would repeatedly tell me that “Asians are just less mature”, something about it being a “cultural thing” (Yeah … I don’t know either. Maybe it’s internalized racism?).

Either way, being so easily perceived as immature (considering everything discussed so far) is also tied to conformity to beauty standards and other factors such as sexism and homophobia, which I believe makes for a complex intersection of identity.

[Note from Author: For Part 3, click here!]

#NotAComic #Fashion #FashionAnalysis

30 notes · View notes

scarsmood · 3 years

Text

Mental Health and Otherkinity

This is my panel I did today! enjoy! it’s the script

My name is scar im apart of a system of 4, I am mightyenakin from pokemon. Trans ftm and very queer. We have a lot to go over so lets jump in.

Today I want to talk about my experience with being psychological kin. Talk about how this has shaped me as a person. How the community handles psychological kin as well as the greater outside world. So lets get into it. Otherkinity has been in my life ever since I can remember. From the age of 3 I can remember feeling non human and having alters that were also non human. I’ve also found for my life and my experience my mental health and my otherkinity are two things that have wound themselves together. I can never look at one without the other are both play a critical role in my identity.

I can say as psychological otherkin right now I stand at an interesting intersection of my life where I have the most freedom I have ever had and dealing with the worst trauma I’ve had to face. I recently got out of a bad long term relationship of something I had been in for 7 years. I can say the events I’ve lived did and still do directly impact my identity and change how I see myself.

for me I cannot explore my otherkinity without exploring my trauma and mental health

these two parts of myself are closely woven together. DID is a product of trauma and it’s something that rules over my life daily.

It is something I don’t just accommodate it is a way of life for me.

For the past 3 years I’ve been in intensive therapy going at least once every two weeks. At one point going twice a week, completed an inpatient and outpatient program. Needless to say I have been fortunate enough to not be in a lot of debt. However I would like to think that these things have helped me immensely. With the background talk out of the way lets get into how these things have shaped my identity.

A little bit about me. I am diagnosed with DID or dissociative identity disorder. This means my identity is split apart between alters or alternate personalities. If your unfamiliar with plurality I can say with confidence that can be its own talk but heres what you need to know.

• My alters are distinct each having their own morals, ideals, life perspective, lived experiences and memories separate from my own.

• We all share one body like roommates share an apartment space

• My alters are a result of trauma I experienced during my life. Each of us hold our share of trauma so imaging trauma is sandbags instead of 1 person holding 100 pounds of sand we have given 25 pounds of sand to 4 alters. Which is much more manageable.

• My alters including me were shaped from the environment they came from

· Alters also share an inner world where they can interact with one another. This also a place where I can easily my identity and how I view myself internally.

Some others fun things about me is I have some mild psychotic symptoms. Since I’m in my early 20’s they’re pretty manageable at the moment I am always keeping an eye out for them worsening though. These things include hallucinations visual, auditory, touch, smell, taste. I also have a weird mix of beliefs that can mix into delusion territory but aren’t damaging to my life and therefore cant really place a good label on them. So I consider them delusional like but not the same experience as a true delusion I believe I could very much be wrong.

my first identity shift was when I was a child about 3 years old was the first time me as an alter became prominently separate from our host. It was apparently at that time I was non human and a hyena. I looked like a hyena from lion king roughly no character in particular and acted as a companion/ friend.

When I got a bit older at 4-5 my identity shifted once I moved and left behind some family. I changed from a hyena to a pokemon. If I could guess I would say due to a pokemons inherent loyalty. My identity became a mightyena a wolfish hyena basically and the codependency that pokemon carry also carried over.

I was depended on to be support for our host and to take care of them as a friend and caretaker. We experienced neglect at the time and this was reflected with my identity. I was a creature that was supposed to stay with someone forever basically giving a comfort we were missing to our host so they could continue functioning. I would say my identity changes based on my environment and is sensitive to my environment all the time

depending on what I experience I see myself change and adapt because of how sensitive we are as a system trying to adapt in the world around us. I often think if my identity isn’t shifting a little it might be a sign of trouble and us shutting down being unable to adapt and change.

When I was 5-6 it changed to its own species a threatening wolf. Which it stayed until a few months ago. My identity as a threatening wolf changed a lot I had spikes then got a sword tail then was able to breathe fire, my size would shift and change, my tail length and ability to move it would change. Teeth, eye color, would all change depending on my environment. For example when I was deep in abuse with my ex I gained the ability to breathe fire suddenly as a needed adaption to scare them away. My eyes turned red to look scarier. I got bigger. This all happened internally as my ex was able to interact within our system in our inner world. Which is a terrible idea by the way don’t be an idiot like me. Which was why I needed to look scarier as a way of protection

Lately I have been healing from trauma and now that my ex is gone so is a lot of pressure to defend myself so I turned back into a mightyena which is much more defenseless but much truer to how I see myself in a safe space. Im sure if trauma happened again I would shift back to a threatening wolf as a means for protection. When it comes to plurality labels I fall under protector and host we are pretty integrated though so we have grown out of most typical labels due to how functional each of us are now.

This concept of a changing identity is taboo in otherkin communities

usually we are lead to believe when we were kids we have always been one strict animal for our whole lives and just now learning about it. this animal never changes it is static unchanging and we simply learn about it as we grow up. My experience has been wholly different. My animal and my identity changes based on my environment it can be subtle or drastic. I never evoke or ask for the changes they simply happen and I have to adapt to the new way I see myself. Trying to apply my identity to the common otherkin rhetoric gave me a lot of grief as a teenager

when I was about 13 because I would discover something about myself say breathing fire or growing in size and be ashamed because I knew these changes were not “typical”

as an aside I think this notion that my experience is atypical is also false. I think this is fairly common but a lot of otherkin just handle it in a way that flows with the static concept where we learn we have a new kin type but still also have the old one, we learn something about our kin type that totally shifts it but connect it back to our old kin type, we find new features, personality traits or experiences that now define our kintype that were never there before and newly discovered

Otherkinity is about self discovery and how it’s essentially chasing a dragon. Literally. We will never fully know our internal identity no matter how closely we look into it. there is so much that we learn and how to weave into our identity otherkintiy is as much of an art as it is a science when it comes to self reflection. It’s just like any other aspect of ourselves we can create labels for our sexuality and they work but they don’t capture 100% of what you experience theyre a short hand for others. I find that otherkinity is this concept on steroids. I find my identity to be a much larger part as it impacts everything including my sexuality it is more prominent for me so trying to put it under labels becomes increasingly difficult.

How are we supposed to create a short hand for who we are? All of those moving pieces inside of us that shape our perspective, experiences, how we interact with people, how we love people, how we go through day to day life, and we are supposed to just say something like “bear therian” what if it changes? What if we have quirks that our outside of this label? When I first joined the otherkin community it was pretty frowned upon to change your identity. You had to be a wolf therian, you had to be a dragonkin. Once you picked a label that was it. your locking into your identity if you didn’t you weren’t taken seriously.

Ableism in the otherkin community

I question as well if this correlation between identity stability and maturity/credibility is ableism. Usually I noticed when I first join the therian and otherkin community there was a push for “not looking crazy” so as to not get bullied further for identities. I’m sure anyone in the LGBT community knows trying to please people making fun of you really doesn’t work. There is a prominent fear of seeming to outsiders as if were roleplaying or kinning for fun which seems to be a whole other topic in and of itself. My personal experience has lead me to the conclusion that these people are going to come at you regardless of how often you shift your identity, how seriously or goofy you take it, how analytical you are with your identity whether you write essays or one sentence it does not change the views of outsiders.

Endels, clinical lycanthropes, and other nonhumans who have mental illness-based identities face a similar ableism. It wasn’t until earlier this year, 2021, when the connection between mental illness and nonhumanity was finally accepted by the greater community. But even still, Endelic communities are more often treated as a novelty; not something to be taken seriously as an identity, just something “interesting.” Mental illness, especially psychotic disorders, aren’t pretty or tame, and the greater nonhuman community appears to subtly enforce this stigma. Werewolves are monsters, and the greater community spares no feelings in reminding us of this, with such unwelcome words my friend babydog’s met as and I paraphrase a quote here from my friend baby dog “you’re welcome here, but you should expect people to uncomfortable about your identity as an endel or question your endelity. I dont personally believe people like you should be part of alterhuman communities.” End quote Many of those who are part of the greater alterhuman community are still concerned about respectability politics, how we appear to outsiders, rather than being concerned about how inner-community members are finding their welcome. Arguments like “But, clinical lycanthropy was previously used as ammunition against all Otherkin! We’re playing into anti-kin’s stereotypes!” isn’t an excuse anymore, because throwing your own community under the bus isn’t acceptable anymore. We want a higher standard in this community than being driven by shame that makes us hide members of our own community. It’s much better to stand with them.

Lets also take a moment to acknowledge these actions stemmed from an act of seeming more credible and not “crazy”. I’d like to say also that the stereotype of crazy doesn’t exist when we think of crazy we think of someone whose mentally Ill and struggling to function. In reality these people have an untreated mental illness or going through an episode that’s only one aspect of a person. They do other things with their life including myself. I write poems and go out with friends but if someone only judged me at my worst and lowest I would fit into this “crazy” stereotype. Its not fair for us to judge people based on actions they cant control. Based on trauma or brain chemistry people are more than that I think can agree.

we should be understanding with these people treating them as whole people not just one descriptor. crazy is really just a derogatory name for someone with a mental illness. So to avoid being crazy means to avoid any signs of neurodiversity people view as abnormal. Or signs of nonconformity with nuerotypicals

-endels still face ableism typically in the form of being treated like a novelty and not really being taken seriously. Endels are still getting called interesting a lot) and it makes them feel like a specimen within their own community. I’m sure those who suffer from mental illness understand how degrading it is to be looked at as some sort of test subject or lab rat. I think as a community we can do better and be more accepting and open to all forms of otherkinity. Shutting down this kinda of language would be great for endel otherkin.

-endels are still having to deal with other community members who use psychotic/delusional/etc as insults or jokey words. These words are derogatory and insulting they shouldn’t be said as insults or jokes there are plenty of other words that could be used and it pushes endels and otherkin with psychotic symptoms away from the larger community. Using this language shows an ignorance to the ableism still alive and active towards endels.

-none of this helps internalized ableism!! All the actions described above only reinforce internalized ablism. This creates a combative and toxic environment for endels and otherkin with psychotic symptoms. It would be in our best interest as a community to help bring down ableism and be more aware of what were saying and to who.

Some things to keep in mind

-treating psychotics like they cant make their own choices is not ok/ thinking for them

-insults and jokes using derogatory language is triggering and alienating

-treating psychotics as lab rats or something to gauk at as “interesting” is demoralizing and takes away someones individual power as a person. Its hard to have an identity and a voice if everyone is busy staring at you like a lab rat.

What about the internal side of the otherkin community? I found when I was apart of the therian community this was a more prominent problem and still is in some corners I wander into. Otherkinity also holds some ableist views but from what I’ve seen not to the same intensity as therian communities. This I would say is a cultural difference from a new age of therians that took over the internet, p-shifting cults, wolf packs, and some forums for therians were intense I know previously therians and otherkin identities didn’t have to much of a difference besides animalistic tendencies or a way to further define an identity. Once this shift happened it became more so about earthly creatures or animals based on earth. earth mythics, animals that exist present day and extinct, and plants as well. I’m not an expert of the history of otherkin and therians so I would direct you to house of chimeras and who is page for more information over it gladly. If im wrong please correct me. That’s my understanding. This shift to earthly animals also carried a sentiment or notion of being more “real” than otherkin that I often experienced in the wolf packs and forums. Since they’re identities were based on “real” animals it made them more valid otherkin. An easy question I asked often or others would ask was a simple “why?” and the response I experienced a lot was “so were more credible/ don’t seem crazy” this was 8-9 years ago which was at the time the height of otherkin hate. It came across as a borderline phobia to be seen as an antikin steriotypes which were ableist stereotypes to begin with. some of these communities in reaction created ridged and strict cultures of how to be therian. This would leave an imprint on many people including myself.

so that was 8-9 years ago why do I bring it up? Because I still see this sentiment present just subtle.

Some things I feel were carried over is: Overly present and specific about kin types, an obsession with details and intricacies to a degree where its no longer beneficial to learn, embarrassed or shamed for certain kin types, a focal point on kin type tendencies and ignoring or pushing aside human experiences to further pronounce a kin type. A fixation on the past and not taking into account of the present, always centering around the past. I would say these behaviors in the community were influenced from the wolf pack cultural shift.

These are a remanent set of reactions from a more intense time of grilling, questioning and if validity was questioned your title could be easily taken away in close knit communities. I think the otherkin community still has some skeletons in the closet so to speak of a more intense time that a lot of members endured and witnessed. We passed on this culture, myself included as we grew up cause its how we learned to present our otherkinity. We can unlearn though and I think it’s time to push for more freedom and new ways to take on otherkinity. a larger problem I see is a fixation with the past which once it gets to a certain point I don’t think can be constructive or healthy. Exploring your past is good, gaining context for your actions and your background is good, but living in the past is not healthy. Reshaping how you live in the present by escaping to the past isn’t really healthy. I find it worrying how common it is for otherkin to not tie their humanity and the present to their identity. It hurts to say, it can be uncomfortable but being human is apart of our experience. Now my therapists always say “never damn a coping skill” if looking to the past and living in the past finds you comfort and it keeps you stable that’s ultimately a good thing your staying stable and keeps you functioning. I urge though for people to start to take the time to explore humanity with our otherkin identities and living more in the present. How your identity effects you right now. How people interact with you and what you can do to tie your otherkinity to the physical world to the present. I think it’s a balancing act ultimately trying to find a sweet spot between the past and the present. Not completely ignoring your past and only staying in the present or only living in the past and neglecting the present. Its not easy and something im actively working on myself.

I want to highlight the present cultural imprint the wolf pack phase in present day otherkin communties and how new otherkin members seeing and reacting to it. we as older members may not realize how impactful our words are and may not notice us carrying an imprint of the past with us. Here some quotes I picked up. I asked a few friends their experiences who had come as otherkin in the past 6 months. I was also able to get 1 anecdote anon from my tumblr after sending out a request earlier today they are also pretty recent. Here what they had to say. These are all anonymous.

“(tumblr)My experience was pretty good! The community is super open and friendly, or at least the side of it I'm on (idk about the fictionkin side of it which might be more controversial/full of discourse).

It was easy to get into which is good because I was super scared about it 😅” “(friend) the whole community is

scary, for me at least, mostly because some of the older grey muzzles seem really intimidating and cliquey

the discord group im in seems like really cool to me, they are all super nice and helpful but the rest of the community is super scary for me”

“(friend) [when asked about getting into the community] it's weird to me, it really is.

I've spent a good chunk of time just like

wondering what it could possibly mean to be "valid" otherkin

like, who's judgement is that? mine?”

My Take on otherkinity

Im telling my story because my mental illness causes me to fall into an undesired or taboo identity categories or stereotypes of otherkin often. I find instability, identities that are less material or easily relatable, signs of mental illness with otherkinity. Are swept under the rug. I’d like to change that and show that instability, less relatable, highly specific or vague identities are just as valid. My experiences can be something of an uncomfortable truth for some that otherkin can be cringy or be easier to target from outsiders. I ask to everyone that has some reservations about accepting more diverse identities to consider how beneficial these new perspectives bring to our community. These identities give a perspective and voice we are missing and is needed. It’s beneficial for our community to be heard fully so we can support and help everyone. Endels may have a perspective other therians/otherkin may not have considered before. the wider range of experiences about our community that we share the better. It gives us the tools to make the community even stronger.

I would say overall psychological kin are extremely diverse and no experience is going to be the same. Its difficult at best to say anything that all psychological kin experience because the definition is so broad. We all have unique and diverse stories and I’d like to encourage everyone to share them even if they show mental illness. Things like Delusions, trauma responses, trauma sourced, episodes and regression. I would love to see more inclusivity for the messier and less understood part of psychological kin.

So lets get into some of my specific experiences. my identity is messy at the moment as my brain seems to have an interesting understanding of what a mightyena is. It has 2 images instead of one

These two images are houndoom and mightyena. Both of them I see myself as but are the same entity. My brain cant see the difference between the two as an identity at the moment. So theyre both “mightyena” its quirks like this that I think should be seen as more acceptable in the community because its messy at best. It has made me on several occasions go “that makes 0 sense” but from a trauma stand point it doesn’t surprise me

my brain has trouble picking only one. If my 5 year old or 3 year old brain attached itself to both images and called them the same then well that’s it im both of them at once. Brains don’t tend to work very logically and while it sounds confusing I would say it probably feels similar to having 2 kin types active at once. The two identities don’t blend (ie mightyena wolf hyena doesn’t breathe fire while houndoom does. ) I experience a range of both identities at once. They’re both mightyena it just so happens that image that’s associated with houndoom is present when something happens that only that pokemon could do or associated feelings or states. I would say theyre 2 different kin types except if I say I have a houndoom kin type I don’t think of anything and don’t feel anything. When I say I have a mightyena kin type I have images and feelings from both. They also cant seem to be separated both images and associations need the other. Its interesting. Its very funky. The wonderful world of trauma. Could probably make anew label for that but that’s alright im not one for labels.

I experience something I call m-shifting which is really animal regression. It’s called m shifting because I was previously in an p-shifting cult where it developed it. it’s uncontrollable but I can start it or trigger it if I want to. When I go into an m-shift I cant understand English, read English, walk on two legs well, speak, or know basic things most people would know. My brain goes into instincts and impulses. I don’t think critically or contemplate much. My thoughts are in images and feelings. Its fun. But its difficult to control, I find it’s a way for me to relieve stress in excess when I cant seem to find a good outlet for it. this is part of my identity is what makes me relate to the werewolf community so much since its involuntary and frowned upon generally to greater society .(aka internalized ableism) One of my biggest fears is shifting in public or with friends. It’s hard on me for sure.

Another thing that effects me is coping linking as someone who deals with trauma I have found lately I’m starting to create involuntary coping links. I had a brief coping link as a sled dog its purpose was the personality of a sled dog was something I needed to be at the moment to stay functional and coherent once I learned to do that without my coping link it went away. I notice myself having brief coping links on and off each of them usually teach me something or a skill I couldn’t fully understand yet.

I experience false memories. My memories change depending on my identity. I don’t force or make them change they simply do.

they hold the same narrative throughout all the changes though. The narrative from what I understand seems to be a re telling of my trauma. My false memories don’t seem to be a major part of my identity and I think I may have them simply because of p-shifting cult trauma and the pressure to have a past life or noemata. I think my false memories are a way to retell my trauma in a form that gives me validation as an animal. I do know seeing myself as human in memories is inherently triggering for me as I cant recognize myself so a set of false memories that lets me see myself in those situations as an animal is comforting and validating. It helps me evaluate my trauma better and understand why I feel the way I do about trauma. A dog that looses its molars would be distraught while a human doesn’t really care if they get wisdom teeth removed. Evaluating trauma through an animalstic lens has helped me immensely. I’ve noticed the more I evaluate and see my trauma through an animal lens the weaker my false memories become and I think that’s neat.

My perspective of the world also changes as my identity shifts

I see the world differently as a mightyena than I do as a threatening wolf. Objects, people, environments and habitats have different meanings to me and associations according to shifts and how my identity changes. These associations and meanings are ones that either I had when I was a child, or ones I repressed due to being childish or something I didn’t see as acceptable at the time. So my identity now has a wider range of perspective. My threatening wolf perspective toned down a lot and let the repressed associations and meanings take a more dominant role.

Another thing that effects my otherkinity is when it comes to species dysphoria I would say it’s a large factor in how I experience otherkinity. I would say my otherkintiy is something very based in the present. I don’t think about my kintypes past, I don’t think about its future or let my mind wander off a lot about whats going on with it. I am usually observing it in the present moment. A big part of that is my species dysphoria which tells me a lot about what I am. I’m trans female to male though that’s debatable as im considering a gender to my kintype. Human gender dysphoria is something that bothers me a decent amount. What has sent me to therapy though is species dysphoria. It is unbearable for me. I have fangs, a tail, a collar, wolfsbane pendant for mythology about werewolves, pointed nails, short hair thicker hair to resemble my kin type. I had to learn how to make animal vocalizations like growling, snarling, whimpering because I felt incredibly stressed being unable to emote properly. I learned to walk on all fours and run as well. I learned to play and move like an animal mostly from m shifting but it helps immensely. Getting on T has helped a lot as I got furrier, deeper voice, thicker hair, generally able to gain muscle better. Overall has helped my species dysphoria. Its something I’ve always had that brings me immense discomfort. I’m planning to make a prosthetic muzzle to wear and possibly some ears.

This dysphoria is apparent when you see me on the street cause im wearing a collar, tail everything I can’t hide my otherkinity because it triggers my species dysphoria to much to hide it so I just have to roll with it. the census? Its really not that bad being out or showing im otherkin. It’s a good conversation starter and most people are friendly about it here which has been nice. I do get asked if im a furry I usually say yes just cause I don’t feel like explaining otherkinity. If someone asks why I usually just say I see myself as an animal. Responses are mixed but people are polite about it. wearing gear makes me feel much more grounded in where I stand with my identity. I noticed a feel much more confident about myself when I am being myself unabashedly. Who knew. Also planning to get some combat boots and add some spikes to them to imitate claws. Should be fun.

Heading back to my weird quirks and otherkinity experience Phantom shifts are something I experience all the time 24/7. In part due to p-shifting cult and also a way to manage my species dysphoria. It’s pretty intense for me and its something I find comfort in and encourage. It’s a way for me to find the world more relatable. Often these shifts calm me down and make it easier for me to navigate the world. I would say my phantom shifts only effects parts of my body im aware of not my entire body all the time. Rather whatever body parts im using. It also does its best to not have any “clipping” through objects and my shift may phase out if there may be clipping to a body part im aware of.

Lastly My gender and sexuality I would say tie to my kintype as well. Im attracted to otherkin moreso than humans. I really like animalistic aspects to people and traits I see in my kintype in other people. I find I get along best with canine kintypes. My gender im realizing is more so tied heavily to my kintype I want to be a male mightyena whatever that entails and it plays closely with my species dysphoria. I find when I relieve my species dysphoria I tend to also relieve a bit of my gender dysphoria to. I say im ftm as a short hand because that’s what my kintypes gender seems to line up with the most. Though I think that will be less and less the case as I start wearing things like a prosthetic muzzle which is pretty animal gender to me.

Therapy and Otherkinity

On this topic I would like to talk about how therapy and otherkinity interact cause that’s something central to this panel. For me I always noticed that when I am given analogies in therapy they are always about an inner child, how I was as a human kid, how I am as an adult. These things are good but they lack the context of me as a whole. I am not just a human I am an animal in a human body which changes a lot in how I’ve had to take care of myself and apply advice given to me by professionals. For one I always have to tell professionals im otherkin and what that entails. That it isn’t a hobby or one aspect of me but something that impacts my entire perspective. Methods of self soothing just wont work for me if I don’t change some wording around. There is no inner child for me personally theres a puppy and a puppy seeks out an entirely different sets of behaviors, emotions, and emotes/ way of communication than an inner child would. You would be able to talk to an inner child hug them and act as a type of parent to them. With a puppy I tend to act more as an owner or an animal parent depending on whats needed.as an owner i have to bridge the communication gap with things like chew toys, petting, dark cozy places, brushing or grooming, non verbal communication

which plays a much larger part in my healing process than what I read or what methods im taught. As an owner to myself I have to learn to take care of my inner puppy the way I needed which can be difficult when no one you know has to follow that method. As an animal parent I also have to act as I am, an animal to my inner puppy that’s what we both understand the common language we speak is non human and is critical to my healing. I find protecting my inner puppy as an animal parent gives me a larger sense of catharsis it feels like something I can finally understand however the methods don’t translate well to the real world. I cant just snarl at people I have to talk to them in a disagreement. I cant go hunting I have to go shopping. Which is why having both an owner and an animal parent.

Both are important because both aspects cant be ignored and need to be used in tandem.

Healing for me when it comes to trauma involves a lot of balancing between my human life and my animalistic needs which is something I have had to do and explain to therapists the difficulties of doing so. I notice most therapists I have met cant seem to grasp this and see otherkinity as more of a metaphor than an identity. I noticed a lot of my therapists would just change metaphors to talk to me instead of reshaping a technique for healing which has caused a lot of problems. An example I can think off the top of my head is instead of “a family sticks together” may be “a wolf pack sticks together” which is helpful sometimes but if it’s the only change it becomes detrimental to me. Often because while not intentional I think a lot of therapies are human-centric. There is an assumption you are human in order to apply the coping techniques or healing strategies. This lead to me unintentionally repressing a larger chunk of my otherkinity just because I was applying these skills without changing anything. Sometimes present day I still fall into this and notice it triggers my species dysphoria to worsen. It can be difficult to spot for me as well because otherkinity is so uncommon no one else is having the same issue in my real life friend groups. So I assume whatever im doing must be ok cause it seems to work ok for everyone else. Which ends up not being the case.

A solution I’ve found to help with this is for one explaining as I go with a therapist what is and is not working. I have to be an advocate for myself and teach them as well what I like and what works and what doesn’t. I try my best to let them know when something they do is detrimental. I also try to explain what brings me comfort and what doesn’t. a nice talk isn’t going to help my puppy self but a hug would. Things like that. When it comes to internal imagery some therapists use I know stating to them youd like them to consider your kintype as yourself has helped me by them not seeing me as a fully human being or just my irl body. overall I hope this talk has helped some people. Given some new perspectives. And I am happy or reiterate some topics I went over. Thanks for coming to my ted talk.

#long post #it was 11 pages #im so sorry #otherkin #therian #fictionkin #psychologicalkin

7 notes · View notes

ashintheairlikesnow · 4 years

Note

Hi, I saw you posted a meme referring to what is happening in the Harry Potter fandom. You seem really open minded and educated so I was wondering if you would be willing to explain what exactly happened there? I’m just a little confused how it escalated. Thank you in advance!

Ooooh I am not the expert on Rowling's transphobic history but I will say this - JKR is deeply transphobic and it's come up in the past.

Recently, she accidentally copied & pasted transphobic bullshit into a tweet reply she was writing to a young fan. While she deleted the tweet, people saw it, asked about it, and she flipped out.

She dug herself a nice hole of being a TERF (trans-exclusionary radical feminist, ie feminists who are transphobic).

Then, I want to say... Last week, although time is meaningless in this Year of Our Lord 2020 the Plague Year so I'm not sure... She saw an article that referred to "people who menstruate" and went on a FUCKING TEAR of awful bigotry about it, threw her transphobic bullshit around like confetti, dug her own grave deeper and deeper on the subject. She filled out the "how to not respond to people who challenge the misinformation you have bought into" bingo card.

Then, in what she seemed to think would help in some way, she posted a ridiculous essay "defending" her viewpoint by spouting the same hideous unfounded discriminatory lies that have always been fed about any group seeking equal representation and justice under the law. She managed to cram some serious damaging ableism into the essay too while she was at it.

None of this is... inherently surprising. JKR has been proving herself like this for a long time. But it seemed a bit like she realized no one was looking at her for five minutes and decided to have a tantrum and hurt/damage trans people for funsies.

Multiple other authors (Rick Riordan, Tamora Pierce, etc) have put out statements supporting the trans community or, in Riordan's case, put out a call for recommendations of works to pick up by trans and non-binary authors or books that featured trans and nb characters that helped showcase some underrepresented writers to bookworms everywhere.

And hey, if it's not utterly clear already what my position is, let me say this:

Trans men are men.

Trans women are women.

NB people are outside the binary, and I won't hear a word otherwise.

You are who you are regardless of how the bigots of the world want to define you.

You are yourselves utterly and completely and deserve every recognition of the incredible courage that assholes like JKR do not recognize in you.

I am sorry for the people who loved HP as kids and young adults and have been so hurt by its author. You did not and could never deserve that, I know how influential and formative a book series you love can be when you're growing up.

If you read this and think you want to send me something supporting JKR, repeating anti-trans talking points, or whatever... please don't. Please please don't.

I will not publish them and give a platform to damaging discriminatory thoughts that hurt people I love. I will not give that a platform here.

To my trans and nb friends and readers... I got your back. I care about you. I know who you are is more important than how any world might want to define you, and you matter to me.

This blog is a place that has a welcome mat out for you.

#no more discourse today #ash and her angry soapbox make an appearance #ash gets in her soapbox #trans men are men #trans women are women

54 notes · View notes

festeringfae · 4 years

Text

i regret to inform you my brain says no sleep til we conquer the terrible movie Heavenly Creatures in its entirety

btw if yr reading this aware of my love of Rope (1948) that’s because that shit is not only very far away from depicting the actual events that “inspired” it but the homophobic murderer propaganda of the real case also heavily involved antisemitic propaganda as well, and Rope explicitly compares the actions of its protagonists to Hitler and condemns them and was screenwritten by a gay Jew. Also most of the homophobia is imo undercut by Jimmy Stewart’s character’s blatant hypocrisy and flat out lies. Jimmy Stewart’s remorse at the end of Rope has all the credibility of a Tati Westbrooke apology video. anyway, time to say bye sister to peter jackson again, here we go. my cat has joined me for moral support.

i accidentally hit a button and the movie went away.......VRC player is trying to save me from myself

the increasing emphasis on Deborah being “ravished”......Do Not Like That, Marking It As Lesophobic, Acknowledging That Might Be Unfair and Doing So Anyway, insert Shane Madej gif saying “and so we do condemn, wholeheartedly!”

wait is this supposed to be satirical of the British monarchy at the time? where is THAT context, Peter???????????????

ok i have figured out whats bugging me about Melanie’s portrayal of Pauline and it’s that everything about it, both including and excluding things that are believable for a teenage girl to have done irl, S C R E A M S the evil gay lackey trope. No wonder I was fumblingly comparing her to Igor earlier. I’m gonna need to stare at a screenshot of Scorpia for hours after this.

oh it’s not commentary, she was just assigned an essay or something on the Windsors and the assignment said about royalty so she gave a report on her OCs

okay there is genuinely shocking stuff going on here and i was gonna say “i feel like i can’t commentate on it because there’s a lot to unpack and i feel like i don’t know anything about it really” but then i realized thats because we are not SHOWN or TOLD about it, and so now my criticism about this not being a documentary extends not only to good taste but also just like?????????? YOUR MOVIE IS DISTRACTING ME FROM ITSELF BY MAKING ME WANT TO WATCH A DOCUMENTARY ABOUT IT INSTEAD

ironically i remember telling my mother that my main takeaway from the lord of the rings movies was that i wish i had read the books so i could actually understand what was going on

for a second i forgot the narration was all diary entries and so i was about to get SO HEATED about them writing letters to each other from the povs of their characters who are married. i mean i still am but mostly because straight or not that is some GAY SHIT that i did when still closeted to myself so like. MAYBE WE JUST PRIORITIZED WHICH HOMOEROTIC STORIES WE TELL, EH?

how is there still a fucking hour of this movie left

at least they also write letters as themselves

isssssss juliet’s narration actual juliet letttttters or nooooooot if you’re going to be sporatic abou what you caption anywayyyyy can you let me knooooooooow

i feel like some people might argue that turning true crime into a narrative doesn’t necessarily have to reflect the truth of the events, and i would just lilke to say: Those people? Are wrong! If you are going to consume real people’s trauma for entertainment, the very least you can do is not lie or spread misinformation about what happened! Not a debate!

love to eat breakfast right when the close ups of puking blood are happening

also love the inherent ableism of as the letters are implied to be getting ~creeper~ (they honestly? aren’t? without the context that she eventually kills someone?) as Juliet looks more wan from TB. also the ableism of implying the TB might have influenced the whole thing, brain wise? idk enough about medical shit to dispute that. but like oh your friendship is getting clsoer now that youre isolated, and also you’re writing in someone else’s pov in love letter ways? thats when youre getting more evil, no lesophobia! (YES LESOPHOBIA, PETER! I SEE YOU FRAMING THESE SHOTS!)

okay NOW theyre getting creepy, fair enough

this all would have been more effective if they hadn’t looked inexplicably ghoulish during the first half of the movie

honestly can we just call this high budget gaysploitation or whatever the term is and go

THE SPLAT NOISE WHEN PAULINE PUTS THE RED PAINT BRUSH OVER THE CAMERA..........PETER JACKSON THIS IS A REAL PERSON WHO MURDERED HER REAL MOTHER!!!!!!!!!!!!!!!!!!!!!!!!

I’m so glad I torrented this instead of giving it any royalties, oh my GOD.

it’s only been 11 minutes since i said there’s still an hour left of the movie T-T

I’m getting more breakfast because fuck it

2 notes · View notes

noescapevg · 5 years

Text

“Politics? In MY Video Games? It’s more likely than you think.”

Welcome to No Escape, a video game writing blog by me, Trevor Hultner. I’m a 27-year-old human person on the internet who thinks writing about video games will somehow bring me joy still, in 2019. I should definitely know better, but here I am!

Earlier this week, video game media Twitter started buzzing about an op-ed by Russ Pitts, the Editor-in-Chief over at the “New” Escapist Magazine, which was relaunched late last year. In this op-ed, Pitts took the “branching paths” approach to essay-writing, going down many different avenues of conversation regarding “ethics in games journalism” toward an overall point of... and I quote:

“To be honest, I don’t know [where this leaves us]. The last time we all tried to have this conversation it … didn’t go well. But the industry, the media, and you all deserve more, and the only way we’ll get there is if we can try again.”

Pitts has taken the old post down (a copy of which you better believe I’ve saved) and put an apology up in its place. He apologizes for potentially instigating remnants of GamerGate to go after their old targets yet again, but...

I think I’m getting too far ahead of myself. There’s a time and place to critique Pitts’ post and his apology, and that time is coming soon, but why are we here to start with?

Entertainment is not exempt from politics

There seems to be a widespread belief among people who are not outwardly far-right ideologues that the things we enjoy - music, movies, books, video games - are not inherently political. A book is just a book, a game is just a game, and so on. And these things we enjoy should be convergence points: places where people from everywhere on the socio-cultural-political spectrum can come together and share in the enjoyment.

The thing is, games - as well as books, movies, music, etc. - are made by people, and people can’t help but be shaped by the world around them. Our influences are most of the time very expressly political, even if we’re not picking up on the messages right away.

Here’s an example. Destiny and Destiny 2 are two highly popular post-Halo FPS games from Bungie. The franchise’s overarching story is exceedingly simple: You play a reborn and functionally immortal “Guardian” of the remnants of humanity. Your franchise-long mission, given to you by your Ghost, is to defend humanity and something called the Traveler, which is also the source of your new supernatural powers, from the forces of the Darkness. The easiest way to carry out your mission is to defeat hordes of enemies by shooting, punching and superpowering your way to victory. Easy-peasy lemon squeezy. No politics at all, right?

Well.

As you play the games, and especially the campaign for Destiny 2, you catch glimpses of a heavily-stratified class society, with the essentially-divinely-chosen Guardians on top and mortal humanity below them. The Guardians have built a massive wall around the Last Safe City on Earth with the functional purpose of keeping humanity’s enemies at bay, but we hear from one character how the walls also serve to keep humanity in, essentially forming a prison state.

Then there’s the moral quandary of your stated mission: kill everything that wants to kill the Light. While there are at least two very evil alien factions in the game (the Vex and the Hive/Taken), two more exist with more ambiguous motives, or at the very least, a much less well-defined alignment with the Darkness. The Fallen (whose actual species is called the Eliksni) and the Cabal are two alien armies the Guardians face off against where our acts of killing them seem more... genocidal than with the former, more markedly “evil” enemies.

The Eliksni in particular sits in a tragic position: their mission is to simply reclaim the techno- and morphological blessings the Traveler bestowed upon them, and to rebuild their society after their own collapse (known in the lore as The Whirlwind). The Cabal don’t seem super interested in the Traveler, at least not at first, and their incursion on Earth doesn’t actually take place until Dominus Ghaul brings the Red Legion planetside. Why couldn’t we negotiate with them instead of fighting? It’s questionable.

“Okay, fine, Destiny is political. But not every game has to be!” You might be muttering to yourself. And that’s true! Not every game has to be political. But that doesn’t stop many games from being expressly political, and that doesn’t stop developers from having political views that shape the way they do business, at the very least.

And for that matter, that doesn’t stop the game’s audience from being political, even if they think they’re not. Misogyny, transphobia and homophobia, racism, ableism and other bigotries have expressly political and ideological roots. And I hate to break it to you, but when people who share ideologies group together to collectively organize around those ideologies, a la GamerGate, that’s a definitively political act. When “gamers” decried the gleeful Nazi-punching in the latest Wolfenstein edition, that was a political act.

There is No Escape

I always find myself at a disadvantage when I decide to start talking about politics, because of the deep ideological gap between myself and my interlocutors most of the time. I’m an anarchist with roots in punk rock music, which has deeply effected the lens in which I view the entire world. I’m used to the idea that everything is political. You might not be. That’s okay. Be open to new possibilities. Just realize that there is no escape.

I’m starting this blog partly out of spite for folks like Pitts at the Escapist, but also because I think it actually is possible to spark conversations about the nature of ethics in video games as a whole, and that these conversations don’t need to be led by the same tired media voices. By embracing politics the way politics has embraced us, there might actually come a day where people don’t have to rehash the same six tired discussions over and over again.

The image at the top of this post is a screenshot from HBomberguy’s massive Donkey Kong 64 marathon livestream. He raised $340,000 out of spite for transphobic washed up comedy writers, and in the process, got Chelsea Manning and Alexandria Ocasio-Cortez in the same chatroom for a little bit. He got John Romero to say “Trans Rights” on stream. That’s some wild stuff, and it was absolutely expressly political.

There is no other kind of situation where something like that could happen.

So what is there to do?

Well, that’s a broad question. This blog will examine video games through a political lens, that much is for sure. Ideally, like really “pie in the sky” stuff here, this blog would be a resource for people wanting to know more about issues in the video game industry as a whole and wanting something to “do” about those issues. But as for you?

Get used to the idea of politics in your games, and get acclimated with the problems facing the people in the industry who aren’t collecting fat checks from their labor. Support efforts to unionize games workers, and support indie devs when you can. Hopefully, over time, we can all be organized for a better games future.

Thanks for reading!

#politics #video games #ideology

1 note · View note

creacherkeeper · 6 years

Note

hey, I have a question for you, I am seeing a lot of meta and things talking about psychosis and Fitz's psychotic break and that he wasn't in control of himself. Does that mean that he isn't responsible for what he did to Daisy? When people say 'it was the Doctor side of his personality, it wasn't him' is that true?

short answer: yes he is absolutely responsible

long answer: mentally ill people are just as accountable for their actions as anyone else. if a mentally ill person hurts someone, that person is hurt and the mentally ill person is responsible. if a mentally ill person abuses someone, it was abuse and theyre responsible

i’ve seen some stuff, mostly from younger people but some not, saying things like “its okay that i treat people badly because thats a part of my mental illness and i cant help it”

thats not true. full stop. its feeding into the demonization of mentally ill people, that we’re some monsters who can’t help but hurt people because we cant control ourselves. it’s just not true. if you ever see someone claiming something like this, run. get the fuck out of there. those arent the kinds of people you can trust

yes, there are times when, because of our MIs, we might lash out in a moment. we might say things we dont mean. we might scare someone by not acting like ourselves. ive done all those things. the important part is after, when im clear, i can say, okay, what happened here to cause this, how can i go about making sure it doesnt happen again, and how can i make the people i hurt feel safe again

mental illness can be an EXPLANATION as to why something happened, but it is not JUSTIFICATION. it does not make the thing that happened okay. it does not mean its not the mentally ill person’s fault. a mentally ill person can say “this happened because of my mental illness” but it is also their responsibility to say “now im going to make it right because it was my fault and im sorry”

mentally ill people sometimes get a different sentence in court for crimes, including violent crimes. we get locked up differently because they dont see us as full adult human beings with motivations and wants and desires who are able to control our own actions. its a way to dehumanize, infantilize, and demonize mentally ill people. people may think we’re getting the better end of the deal here, but it is still ableism (and the people who think its better are probably not learned on institutions’ history of major abuse). theyre saying “its not their fault they did this violent thing. theyre mentally ill. violence is in their nature”. that idea, in itself is violence against us

TL;DR: mentally ill people are people. we take actions and we have to take responsibility for those actions. saying otherwise is ableist and can lead to violence against us because people come to see us as inherently violent and abusive. we are not. we have just as much capacity for violence and abuse as anyone else, not because we’re mentally ill, but because we’re human. we’re much more likely to be victims of violent crimes, but when we do perpetrate them we need to take responsibility

i hope that explained a little why those people are wrong. i could write an entire essay about this topic, but i think im going to stick to this for now. let me know if you have further questions

#aos #aos spoilers #fd trauma #abuse mention #Anonymous

37 notes · View notes

bluewatsons · 4 years

Text

Joel Michael Reynolds, What if There’s Something Wrong with Her?: How Biomedical Technologies Contribute to Epistemic Injustice in Healthcare, 58 Southern J Philosophy 161 (2020)

Abstract

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader implications for just and equitable healthcare delivery.

Access to basic healthcare and equal forms of medical care is considered essential on distributive theories of justice (Daniels 1979). Yet, the practice of medicine is a human affair, and humans are notoriously prone to obstinate cognitive biases (Kahneman 2013). Such biases result in medical errors that would undermine diagnosis, treatment, and care even in ideal healthcare systems. Furthermore, there is a steadily growing body of research examining how such biases give rise to medical errors that are not equally shared by all, but instead disproportionately affect the health outcomes of vulnerable medical patients and historically oppressed patient populations (Reiheld 2010; Carel and Kidd 2014; Blease et al. 2017; Maina et al. 2018,

Reynolds and Peña-Guzmán 2019). This research, which typically focuses on patterns of patient-provider communication, institutional norms, and the effects of historical and sociopolitical factors on medical practice, also makes plain how such cognitive biases are rooted in oppressive systems and processes of racism, sexism, cissexism, ableism, and classism, et al. However, there is little work on the ways in which the development and use of recent biomedical technologies themselves contribute to epistemic injustice in healthcare and beyond. In this essay, I address this lacuna by exploring the role that biomedical technologies play in harming patients in their capacity as knowers.

Criticisms of new technologies, including biomedical technologies, invariably run the risk of overgeneralization. To appropriately restrict the scope of my analysis, I focus upon clinical applications of genetic and genomic sequencing technologies, including whole genome and whole exome sequencing as well as chromosomal microarray, and I do so with respect to return of results of variants of unknown or highly variable significance in prenatal and pediatric settings. I believe that my arguments extend to other sorts of technology, biomedical and otherwise, but I do not put forward the case for that extension here. For shorthand, I will refer to these jointly as genetic and genomic screening technologies (GSTs). Given the purposes at hand, I group these technologies together because of the way in which they each produce excess information beyond the discrete, animating clinical concerns in any given case and thereby produce information that can be medically unactionable or fundamentally ambiguous.

My central argument is that GSTs cause epistemic injustice through what I call epistemic capture and value partitioning. Epistemic capture occurs when fundamentally ambiguous information is transformed into and treated as definite knowledge. Value partitioning occurs when variously available hermeneutical resources are restricted to an inappropriately simplistic evaluative scale or set of appraisals. In the cases of GSTs, this restriction leaves open just two possible appraisals: positive or negative.1

I begin by analyzing a set of qualitative research detailing the psycho- social impact of GSTs in the aforementioned clinical settings. Then, I lay out the argument that GSTs cause epistemic injustice through epistemic capture and value partitioning. I close the paper by discussing the larger ethical and political context of critical analyses of GSTs as well as the broader implications of this analysis for addressing epistemic injustice in healthcare and for the practice of just and equitable healthcare delivery more generally.

Three initial clarificatory comments are in order. First, my use of the term “epistemic injustice” goes beyond its typical scope in much of the literature (Fricker 2007; Hookway 2010; Kidd et al. 2017). I focus neither on harms caused by another individual such as one’s provider, nor on harms caused by institutions. Instead, I focus on harms caused by the epistemic frameworks at play in the development and use of biomedical technologies, which is to say, in the interpretation of the data and information they produce as well as in the many practices and activities such interpretations generate and shape. Put differently, my focus is on harms resulting from the specific hermeneutical resources and processes put to work by and through biomedical technologies in the sorts of cases under discussion. In this way, I hope to contribute not only to the literature on epistemic injustice, but also to the more specific project of understanding how “certain newborn screening results,” as well as pediatric screening results, “have been demonstrated to cause distress, alter behavior, and even to influence the formation of new parental and family identities” (Grob et al. 2018). I leave open for future research the extent to which this analysis applies to GSTs in different clinical contexts and cases, including returning results other than those dis- cussed here, and I also leave open the extent to which this analysis applies to different sorts of technology.

Second, when one studies biomedical technology, one is dealing with an especially complicated phenomenon. With respect to a technology like whole-genome sequencing, for example, there are hundreds, if not thousands of people who play roles in the many processes leading up to and extending through its clinical applications as they exist today, ranging from computer scientists and lab technicians to various clinicians and genetic counselors. “Biomedical technology” often functions as a synecdoche for a large and labyrinthian network of interactions between a variety of actors in biomedicine and a host of technological tools and processes. In short, this complexity makes “biomedical technology” a difficult object for epistemological inquiry, including “genomic sequencing technologies” more specifically. Speaking of the practices and concerns captured by the umbrella terms “genetics” and “genomics” as well as “postgenomics,” Colin Koopman rightly notes that “it is by no means the case that these varied scientific projects are all, at bottom, somehow the same. Rather, there is increasing complexity in the very practice of the genetic sciences” (forthcoming). One upshot of my analysis is that studies of epistemic injustice in relation to biomedical technologies may present special methodological issues and require a thoroughly interdisciplinary and transdisciplinary approach.

Third, insofar as epistemic injustice contributes to distributive injustices (Coady 2017), it is a compounding form of injustice in the context of the US healthcare system, for this system is infamously unjust and inequitable both historically and today (Washington 2008). Writing about biomedical technologies is an inherently political endeavor if for no other reason than that many of the technologies discussed in journals of philosophy, sociology, anthropology, bioethics, and public policy are technologies that the majority of humans on Earth cannot access. That they cannot do so is not primarily a question of bad luck, but of histories of colonization and imperialism (Wolfe 2006). The benefits of GSTs, for instance, are typically enjoyed by a demographically small slice of the white, middle- to upper-middle class in the global North. Until the profound inequality of access to such biomedical technologies is addressed, inquiries such as the one I am undertaking risk missing the actual moral and political forest for the privileged trees.2 I take this concern very seriously and discuss it at length in the concluding section of the paper.

1. Genetic and Genomic Sequencing Technologies

GSTs have been used in clinical settings for decades. These technologies use modern computing power to analyze particular portions of the genetic material in a human organism primarily with the aim of detecting medically actionable (or potentially medically actionable) variants. Since 2010, the American College of Medical Genetics has supported chromosomal microarray as a first-tier test for individuals with several types of suspected genetic diseases (Miller et al. 2010). Whole genome sequencing (WGS) technologies, unlike chromosomal microarray and other methods that sequence individual genes or specific sets of genes, analyze the entire genome of an organism, including chromosomal as well as mitochondrial DNA. WGS provides significantly more data and is increasingly preferred by clinicians as a diagnostic test.3

However, due to their breadth and depth, these tests can uncover information that is incidental to the initial concerns that prompted the test in the first place. This includes information that can be fundamentally ambiguous and, at times, without known medical significance. As Eric Green, director of the National Human Genome Research Institute at the NIH put it in 2016, “we are overwhelmed by the amount of data coming out of these sequencing instruments . . . it’s a new circumstance . . . reading out a genome sequence is not the hard part [anymore]; the hard part is progressing on and figuring out what to do with the information about the variants in our genomes.”4 This situation is historically unprecedented, and it is faced by clinicians and researchers at the same time that whole genome sequencing and related techniques become more common in clinical and other settings that translate the findings of basic research.

As Khoury et al. argue, “Our current translation landscape in genomic medicine has major gaps. The science of gene discovery is relatively well funded and moving forward at a rapid pace, yet the translation sciences, including both clinical trials and large, well-designed observational studies, are lagging behind. Often, a gene discovery per se is simply assumed (incorrectly) to have clinical validity and utility for the practice of medicine (for example, genetic variants for susceptibility to diabetes...)” (2008). Put bluntly, the tools to meaningfully understand a significant chunk of the raw data being produced are lacking.

This is therefore an especially important juncture to investigate the epistemic frameworks shaping our efforts to interpret genomic data and the effects these frameworks, these efforts, and our interpretations have on all those who interact with and are affected by genomics research. It is in this light that I begin with an analysis of recent qualitative studies detailing how parents interpret genetic and genomic sequencing results.

2. Knowledge, Meaning, and GSTS

Werner-Lin et al. (2017) report the case of a mother who underwent chromosomal microarray screening and whose baby tested positive for a copy number variant with a highly variable phenotype. The mother reported that provider reactions ran the gamut from:

“Doom and gloom” to “(t)his baby’s perfectly fine, why are they putting you through this?” As her daughter reached 6 months, she said: “I’m constantly questioning ‘is this because of her disorder?’ For example, she’s a really bad sleeper so for the longest time I thought ‘wow, is this her deletion or is it just that she’s five months old and she sucks at sleeping like most babies?’” (Werner-Lin et al. 2017)

Even though the meaning of the baby’s “deletion” was fundamentally uncertain, and even though the opposing responses from providers demon- strated this, this mother struggled to resist taking the ambiguity of the GST information to be knowledge of something being wrong. Another parent said,

Once or twice it’s crept into my head where I’ve been like “what if this microarray result . . . like there’s something wrong with her and we don’t know and one day she just has SIDS [sudden infant death syndrome] and stops breathing.” She’s got such a strangely mellow temperament, so I think, “is there something wrong with her that she’s just so lovely”—which makes no sense. (447)

“Which makes no sense.” This parent, even more explicitly than the one quoted beforehand, recognizes that it is unreasonable to take the uncertainty of the copy number variant to be evidence of, to be a piece of knowledge demonstrating or suggesting that, something is wrong. Yet, the epistemic inertia from uncertainty and ambiguity to certainty and clarity that something is wrong is powerful enough that some parents even began entertaining concerns about assumed social repercussions and difficulties. Another said,

I never shared it [the results] with any family [members]. My dad would treat [the child] differently even though the results don’t say anything definitive. If she drops a ball or says something really stupid, he would say “oh, there’s something wrong with her; she’s retarded, or she’s autistic.” He would just go there. (449)

“Even though the results don't say anything definitive.” In each of these cases, the epistemic (and existential) inertia generated by the uncertainty does not lead to the general assumption that their child may have something different about them; it leads more specifically to the assumption that they will have a disability, an impairment, and one that causes disadvantage—that will, it is assumed, make their life, on the whole, go worse.

Take the case of a mother who had been told that the screening results for her newborn suggested the possibility of PKU (Phenylketonuria), but not definitively so. She originally “sloughed off” the information. And yet, she stated,

Then you go on the Internet and it’s, like, if the levels are like this, you know he’ll become retarded. He’s losing IQ points by the second. And I’m, like, oh, my gosh! I’m looking at him, and, like, he seems fine. Is his brain, you know, getting destroyed by the protein that’s in my breast milk? (Timmermans and Buchbinder 2010)5

“You know he’ll become retarded.” Here, the clinical encounter itself does not directly animate the shift from ambiguity to certainty to specific concerns about disability. Instead, a complex, social repository of varying forms of information (the internet) leads to it. The levels, which are in fact ambiguous, are taken to be definitive. And the experiential outcome of that taken-as-definite-knowledge is further interpreted to mean: “you know he’ll become retarded.”

Even when screening results were not related to the initial reasons for a diagnostic test, in one study parents reported “a sense of self-imposed obligation to take on the ‘weight’ of knowing [this information], however unpleasant” (Anderson et al. 2016). Parents reported a duty to know if something was wrong, even after being told that incidental or secondary variant information could be ambiguous and without actionable medical significance. Based on this study, it seems as though the very framework of GSTs creates—or at least sustains—a pressure to know. One parent stated,

How is he supposed to go on and live a happy and productive life . . . when . . . he has pretty much a guillotine hanging over his head of all these possible things that are going to go wrong? (Anderson et al. 2016)

“All these possible things that are going to go wrong.” This prima facie contradictory phrase lays bare the existential impact of GSTs in cases such as these.6 A fundamentally ambiguous piece of information, a possibility untethered to evidence of the sort that is to be modern medicine’s life-blood, transfigures into a piece of knowledge that something bad is going to befall one’s child—and that something bad is their becoming disabled. I will now turn to use the tools of social epistemology to better understand how and why this happens as well as what harms such situations bring about.

3. The Epistemic Framework of GSTS

In each of these examples and the larger studies of which they are a part, parents struggle with the epistemic framework and processes put to work by and through these genetic and genomic screening tests. In the analysis that follows, I will focus on the concepts undergirding GSTs in order to understand the larger epistemic framework at play. In other words, I aim to show how these concepts shape larger patterns of knowing and interpretation in these contexts.

I take this route for a number of reasons. First and foremost, I find the concepts central to the development, production, use, and interpretation of GSTs—the conceptual architecture of GSTs, if you will—to fruitfully reveal the epistemological milieu that patients find themselves in when working to make meaning out of the information put before them.7 The concepts at play, then, are an especially fertile starting point to understand the larger epistemological framework in question because, as I hope to show below, they reveal the epistemological landscape at work in the lived experience of receiving and interpreting its outputs, which is to say, the lived experience of taking up and dealing with their meaningfulness.

Furthermore, I follow feminist theorists, critical race theorists, and critical disability theorists, among others, in understanding moral labor to centrally involve conceptual analysis as guided by empirical reality, which is to say, conceptual analysis as guided by the actual conditions under which people live and with special attention to histories of oppression and extant social hierarchies. As Charles Mills puts it in, “‘Ideal Theory’ as Ideology,”

Moral cognition is no more just a matter of naïve direct perception than empirical cognition is . . . concepts are necessary to apprehend things, both in the empirical and moral realm. But once one recognizes (unlike Kant) the huge range of possible conceptual systems, then . . . concern about conceptual adequacy becomes crucial. . . . It will often be the case that dominant concepts will obscure certain crucial realities, blocking them from sight, or naturalizing them, while on the other hand, concepts necessary for accurately mapping these realities will be absent. Whether in terms of concepts of the self, or of humans in general, or in the cartography of the social, it will be necessary to scrutinize the dominant conceptual tools and the way the boundaries are drawn. (Mills 2005, 174–75)

One of the ways that dominant concepts obscure instead of illuminate is by hiding their status as concepts—by passing as facts of the matter instead of, as they in fact are, determinate for and shaping of interpretation and judgment.

With these concerns in mind, consider the diversity of dominant, organizing concepts at play in GSTs: disease, disorder, variation, mutation, risk, and typicality, among others.8 If one heeds research in the philosophy of medicine as informed by the philosophy of disability and critical disability theory, these seemingly diverse and complex terms are grounded in just one foundational concept: the norm (or, if one prefers it phrased as a state or quality, normality).9 As I have argued elsewhere in light of that research, normality “is the glue that renders any given modern concept of health, illness, or disease coherent. Just as one must assume or construct a moral exemplar in order to articulate a theory of virtue, one must assume or construct a [“normal”] psycho-physiological exemplar in order to articulate a theory of health, illness, and disease” (Reynolds 2018a). Though the concept ultimately originates out of statistics, management sciences, and shifts in modes of governance in the eighteenth and nineteenth centuries, it easily and too often functions ontologically and normatively—it is taken as a mea- sure of how things are and should be (Davis 1995).

While normality can be applied to any number of phenomena, in each case, its hermeneutical or interpretative function is to bifurcate. Normality is a binary concept. It serves to divide and divide into just two sorts with opposite valences. If a phenomenon is not normal, it is abnormal, regardless of whether its abnormality is construed as deficiency or excess. In some medical contexts and with respect to some medical phenomena, the line between these two domains is understood as involving some amount of ambiguity. For example, it is not the case that a blood sugar level of 239 is normal and 240 is abnormal; they both straddle a point that has been established to be of clinical significance and both would be flagged as problematic.10 While the specific demarcation between normality and abnormality involves pragmatic decisions that are often, or at least ideally, based upon a rich and varied data set, it is nevertheless the case that the conceptual binary of normal/abnormal is regulative for genomic sciences. That is to say, it guides and orients how phenomena that fall under its scope of analysis are understood. The concept of normality, acting as the foundation of the epistemic framework of GSTs, structures information according to the binary distinction between the normal (positive) and the abnormal (negative) (Waldschmidt 2005).11

If one recalls the longitudinal study from a newborn screening context cited earlier, parents who received a report of some genetic abnormality— even if its eventual expression was uncertain due to significant phenotypic variability or due to some other reason—started treating their child as already “sick” (Timmermans and Buchbinder 2010). In light of this evidence, the authors of that study suggest that newborn genetic and genomic screening can lead parents to treat their children as permanent “patients-in-waiting.” Because of the value we place on being “normal,” parents interpret risks, probabilities, and even unknowns as evidence of fated, feared things unseen, as evidence of knowledge that something is or will be wrong in and for the life of their child. But what, precisely, does this knowledge mean for parents? And do the specific hermeneutical resources and processes put to work by and through GSTs, as well as the outputs of those processes, in fact constitute a harm to parents in their capacity as knowers?

3.1. The Epistemic Harm of GSTs

Using examples drawn from qualitative sociological research conducted in clinical settings, I have suggested that the epistemic framework of genetic and genomic sequencing is defined by the concept of normality. I further claimed that this concept, which is operative in everything from the demand to create these technologies to the sociocultural milieu of parents and clinicians who use them, ultimately functions to classify results into one of two domains, normal and abnormal, and one of two respective values, positive and negative. I have not yet explained, however, why the effects of this framework constitute an epistemic harm in the senses explored by social epistemologists.

The way in which GSTS are put to work cause harm to people in their capacity as knowers through two pathways: epistemic capture and value partitioning. Epistemic capture occurs when fundamentally ambiguous information is transformed into and treated as definite forms of knowledge. Value partitioning occurs when variously available hermeneutical resources are restricted to an inappropriately simplistic evaluative scale or set of appraisals. As suggested above, this restriction leaves open just two possible appraisals in the aforementioned cases of GSTs: positive or negative. Epistemic capture mobilizes hermeneutically ambiguous resources as if they are not ambiguous. It passes off fundamentally ambiguous or underdetermined genomic knowledge as if it is reliable diagnostic and prognostic information when it is not. Because of the role played by the concept of normality in genomic sciences in conjunction with the broader social and cultural prevalence of ableism, this can lead directly to value partitioning. This feature of GSTs, as they are in fact put to work in relation to the manifold epistemic agents who interact with them, filter lives into being either “positive” or “negative,” either “good” or “bad.”

Note that the restrictions GSTs place on the relevant hermeneutical resources are many. To borrow a term from Eric Schwitzgebel, there is what could be called morphological prejudice with respect to assumptions concerning the variability of forms of the human body and mind.12 Of course, the idea that there is a “standard” human form is created and gains steam in a specific historical context. That idea requires active ignorance of the de facto range of shapes, sizes, looks, forms, and styles of being of human animals. It also requires active ignorance of the social and political stakes of normalization (Bashford and Levine 2010; Lombardo 2011).

There is also hedonic prejudice with respect to assumptions concerning which forms of human life are germane to flourishing and which are not.13 To assume that a clinically significant genomic variation (not to mention a variant of unknown significance) is automatically negative in the sense of foreclosing one’s potential flourishing is misguided. Lastly, there is scientific prejudice with respect to assumptions concerning the authority of the modern life sciences to determine the meaningfulness of a life, the forms life can take, and the flourishing various forms of life enjoy.

Crucially, what makes the restriction of value partitioning indefensible also turns on whether the hermeneutic resources in play reasonably include the views, experiences, resources, and research relative to the phenomena over which they are taken to have epistemic purchase and the people who have lived, embodied knowledge of those phenomena. This is not simply a question of epistemic error, but also of injustice, for these restrictions function to uphold extant systems of oppression, systems that subordinate historically oppressed and marginalized groups. It is a question of what Kristie Doston has called “contributory injustice” and an instance of what Gaile Pohlhaus Jr. calls willful hermeneutical ignorance (Dotson 2012; Pohlhaus 2012). That is to say, in order to take the binary value partitioning in question as accurate, one must actively ignore all of the testimony and bodies of knowledge that, if taken seriously, would undermine it.

A more capacious definition can now be offered: GTSs contribute to epistemic injustice by (a) transforming ambiguous information into definite forms of knowledge taken to be true and (b) restricting variously available hermeneutical resources used to interpret that knowledge—knowledge concerning health states, bodily transitions and variation, the communities that form around them, and the life course as whole—to a binary set of domains, values, and meaning: the domain normal/abnormal, the values positive/negative, and the meaning everything's fine/something's wrong.14 In the cases I have examined, value partitioning occurs after or along with epistemic capture, though I would offer that value partitioning functions in these ways even when epistemic capture is not at play, such as when a diagnostic and/or prognostic result is more or less clear-cut.

There is a further prejudice at work here, however, and one which is per- haps primary or at least a lodestar. If one considers the sociocultural context in which “either something is wrong or everything is right” becomes meaningful, this sort of epistemic partitioning feeds upon and propagates ableism. By ableism, I mean the assumption that being able-bodied and “normal” is better than being disabled and “abnormal” and the many discriminations and oppressions people with disabilities face as a result of this assumption. In short, ableism refers to the privileging of able-bodiedness. As it functions in the cases under discussion, value partitioning is fundamentally ableist. It contributes to an ideology that devalues people with disabilities because it narrows how and what people know concerning how bodies and minds are, can, and should be. Value partitioning excludes and limits the epistemic space in which, and resources about which, people conceive of and judge the range and wellbeing of bodies and minds.

3.2. Ableism and Epistemic Harm

However, it is not just ableism in general that is to blame. Part of the reason the specific hermeneutical resources and processes put to work by and through GSTs take this binary partitioned form is because of the ableist conflation of experiences of disability with experiences of pain, suffering, and disadvantage. This assumption has many epistemic ramifications in terms of how people judge, interpret, and understand their own lives as well as that of others. What is more, this assumption has historically had and still has today many material effects, including a panoply of discriminations, oppressions, and historical injustices against people with disabilities across the globe (Erevelles 2011; Nielsen 2012). One of the reasons people with disabilities have been among the first targeted by various eugenic programs historically has not simply been a question of “fitness,” but also of the fact that their lives are assumed to be fundamentally suffered—lives “no one would want” or, in the Third Reich’s formulation, “life unworthy of life” (Garland-Thomson 2015a; Kittay 2016).

Because enormous value is tied to being normal and because negative health risks are tied, as if an ominous bow, to being abnormal, the knowledge produced by this epistemic framework is not animated by a simple desire to learn, but instead a charged desire to know—to definitively know on which of the two sides, normal or abnormal, one’s child or oneself falls (Waldschmidt 2005). For many parents, this is the binary division upon which a life worth living or, at minimum, a life enjoyed falls. When considered in this light, everything's fine/something's wrong in fact means my child is not disabled/my child might be or become disabled. It is hard to overstate the psycho- social impact of uncritical belief in this binary division. Yet, as I hope to have made clear, it is only under the sway of ableism that something being “wrong” with one’s child comes to mean that they are or will become “disabled” in a negative sense of that term.

In at least the cases under discussion, GSTs put to work a deeply prob- lematic binary framework. This should give pause for proponents who suggest that the information produced by GSTs and the methods to interpret and communicate about them are in fact far more complex and diverse. Insofar as ableism is a bulwark of injustice and insofar as biomedical institutions and practitioners are committed to justice, epistemic capture and value partitioning result in epistemic harms that need to be addressed and remedied.

Anthropological and historical evidence suggests an extremely wide range of ideas and attitudes about the numerous forms of embodiment that today fall under the term “disability.”15 Even if the issue of epistemic capture in these cases were sufficiently addressed by, for example, withholding information concerning variants of unknown significance, insofar as the epistemic framework of GSTs involve value partitioning, such technology would still impede people from appreciating the diversity of forms of embodiment, health trajectories, and flourishing bodies, minds, and communities in terms other than something's wrong/they might be or become disabled or everything's fine/ they are not disabled.

One might object that this is not a problem of the technology in question, but of the interpreter(s) of its output. I find this objection to fail because it inappropriately narrows the interpretative field in question to the particular epistemic state of individual agents: in the cases under discussion, parents and practitioners. But knowledge is fundamentally and irremediably social, and these technologies have been developed, propagated, refined, and interpreted at every step by humans and in the context of large-scale human institutions, such as the practice of modern medicine in general and the development of the HGP in particular.

Furthermore, these clinical contexts involve epistemic agents who are fundamentally asymmetrical with respect to their epistemic authority. Practitioners are experts and patients are not. People assume that if experts are telling them that there is a finding, this must be because this finding matters (otherwise it would not be mentioned). What is more, because doctors and institutions lend legitimacy to GSTs by using them and charging money for them, it is reasonable that patients will trust these technologies even when the results are, in fact, useless or potentially useless data with respect to promoting positive health outcomes. The fact that variants of unknown significance are of unknown significance is undermined by the default assumption that if they were not significant, they would not be communicated about and would not be part of the practice of GSTs.

But it is not just a question of how a given individual practitioner manages this authority. A practitioner who tries to counter this assumption is likely going to fail because it runs counter to the logic of communicating the results of a test, which is to say, a logic where information that has no actionable meaning is not a “result” at all. From the perspective of parents interviewed above, the fate of their child’s life and wellbeing may ultimately be at stake. In these clinical contexts, the existential stakes desiccate all the force of “unknown” and transfer it to “significance.” In short, patients hear information about these variants not in terms of unknown significance, but unknown significance.

To make matters more complicated, when it comes to interpreting sequencing results, providers can find themselves deferring to other experts—whether it be genetic counselors, technicians at the lab(s) where the sequencing was performed, or specialists of another sort. Although there are strong pushes for the increasing incorporation of genomic information into clinical settings, too many practitioners lack substantive knowledge about the current state of genomics (Houwink et al. 2012). This lack of expertise is yet another reason why value partitioning is such a pernicious effect of GSTs: the requisite knowledge to interpret genomic information in a nonbinary, nonableist way appears to be lacking not only for the majority of patients, but perhaps even for the majority of providers. I address how to rectify this issue in section 4 below.

One might also object that there is a third domain at play here: neither “something’s wrong,” nor “everything’s fine,” but that of the unknown, indeterminate, or ambiguous. This objection turns on treating the latter as its own category. On the contrary, I find the social scientific research cited above to instead suggest that parents in fact interpret indeterminate results as “negative,” “most likely negative,” or, perhaps most accurately, “not positive.” Indeed, one of the effects of epistemic capture and value partitioning is to close down interpretive avenues that would better deal with the ambiguity that the information provided by GSTs in fact present.16

It is important to remember that patients invariably interpret medical information in existential terms. That is to say, the ultimate meaning of biomedical information and knowledge is determined relative to the meaning of one’s life and the various knowledge at one’s disposal about it. Insofar as most people do not know that there can be health within illness (Lindsey 1996), that disability is often positive and is not the same as either disease or illness (Davis 2013), and other such evidence from disability communities, the process of epistemic capture and value partitioning at work in GSTs forces parents into one side or the other of its epistemic framework, rendering information that straddles the divide or shows the divide to be misleading difficult to understand.

This is especially problematic in light of the fact that far too much of the research on patient empowerment is carried out in an uncritical mode (Calvillo et al. 2015). That literature often assumes that the more medical knowledge and expertise patients gain, the better, never considering that the very concepts, epistemic frameworks, and other components of modern medical knowing and practice itself might themselves be problematic. When placed in the context of their development, production, use, and contexts of interpretation and meaning, the process of epistemic capture and value partitioning that biomedical technologies put to work rely upon and actively foster ableist intuitions, and it will take concerted critical work to combat these effects.

4. The Ethics of Social Epistemology at the Intersection of Bioethics and Public Health

I said above that writing about biomedical technologies is an inherently political endeavor. It is so for many reasons, not least of which is the fact that many, if not most of the technologies discussed in academic journals of philosophy, sociology, anthropology, bioethics, and public policy are technologies that the vast majority of humans on Earth cannot access or to which they have limited access. For example, limiting the scope just to the United States, the basic structures of this settler nation-state not only fail to distribute basic goods such as healthcare services to all its citizens, but are also historically based in a market and political system built upon fundamentally unjust institutions such as slavery and upon the inequality of persons based upon considerations of race, ethnicity, sex, gender, sexuality, physical and mental ability, and so on (Beckert and Rockman 2016; Jay and Lyerly 2016). In many different respects, this has continued through to today (Alexander 2012; McWhorter 2017). What, then, does it mean for bioethicists to engage questions of injustice in the context of a larger system that is profoundly unjust, both historically and today?

I agree with Josephine Johnston and Eric Jungst when they write, “resolving the predictive uncertainties of genomic information is the professional responsibility of the biomedical community, just as clarifying the impact of global warming or assessing the risks of rising multidrug resistance is the responsibility of similar specialists” (Johnston and Juengst 2018). Yet, and as I am sure both of those authors would agree, the constitution of the “biomedical community” is far too narrow and those who have access to the benefits of biomedicine are far too few. The clinically-guided benefits of GSTs discussed in this paper are typically enjoyed not by an imaginary public of all citizens, but by a demographically small slice of the white, middle- to upper-middle class (Reardon 2018).

There is also the crucial and intimately related issue of reproductive rights. What does it mean to critique technologies that, in principle at least, offer more reproductive autonomy when—as this very article is being written—there is an all-out assault on reproductive rights in the United States? This includes lawsuits from multiple states specifically designed to get a hearing in the new Supreme Court to overturn Roe v. Wade (Smith 2019). In light of the work of the reproductive justice movement, how does one critique technologies that prima facie offer greater reproductive control (Ross and Solinger 2017)? And what does it mean to contest the categories of normality and abnormality when they help determine what insurance companies will or will not cover and what can be claimed as a harm or infringement in legal contexts (Campbell 2009)?

In short, critiques concerning the downsides of technologies such as GSTs that privileged groups can access and that historically oppressed groups cannot—and in many cases have been actively denied—could right- fully be charged as itself an exercise in privilege. There is much merit to this concern. In fact, this is a concern that all scholars, but especially those working in bioethics, public health, and other health-related fields, should reflect upon as a matter of course. However, I find that this critique—and ones like it—are still worth carrying out. Here are two reasons why.

First, to understand this paper as implying that we should ban or diminish access to GSTs is to fundamentally misconstrue the arguments I have put forward. My analysis has been restricted to demonstrating that the processes of epistemic capture and value partitioning are unjust in the context of GSTs when the epistemic framework(s) upon which they draw are indefensibly narrow. In other words, the normative weight of this paper turns primarily on the question of hermeneutic resources, a question that the work of Kristie Doston, among others, demonstrates to be of the utmost normative and practical import (Dotson 2012). My analysis, in other words, is less a critique of GSTs or related biomedical technologies as such and more a critique of the interpretative scenes that such technologies stage and in and through which various clinical actors play. The agents in these scenes— both the providers and patients, as well as the technicians and other specialists who are part of the larger interpretive processes—can change its interpretive parameters. I have not here made any arguments denying that the epistemic frameworks of GSTs could be appropriately expanded and altered.17 In short, the overarching point is as follows: the problem is less genetics or genomics and more how we interpret these bodies of knowledge.

Second, if one heeds the scholarship of those working at the intersection of disability and race, it becomes clear that combatting ableism without also combatting racism is as problematic and doomed to fail as combatting racism without combatting ableism (Ferri 2010; Bell 2011; Clare 2017). Arguably, it was Foucault who first argued that the historical rise of modern medicine, public health, and modern forms of governance operates though a “racialized eugenics” (Foucault 2008). That is to say, it operates through a principle that differentiates citizens through processes of racialization that function to decide “fitness,” a normative ideal of ability, within a given population as well as processes of abilitation/debilitation that function to determine the differential “fitness” of people according to categories of racialization. In short, the binary “normal/abnormal” is of the same cloth as the fabric of racialization that has historically undermined the realization of egalitarian principles and the possibilities of distributive justice in this country (among other places across the globe). In this light, making decisions whose value is based upon the binary partitioning discussed above can be not simply ableist, but also racist—and even when made by those whose belong to social groups that have been historically oppressed.

Having said all this, a more practical concern remains: if one is convinced by my argument that GSTs carry out epistemic injustice against patients through epistemic capture and value partitioning, what is one to do? There are many possible responses, but I will here outline four pathways that could assist in removing or at least ameliorating the harms in question.

Practitioners need to become adept in the hermeneutic resources of disability communities and other marginalized communities (Garland-Thomson 2012, 2015b). To take just one example with respect to intellectual disabilities, all practitioners should learn about the neurodiversity movement and incorporate its insights into how one thinks, talks about, and, where appropriate, treats cognitive differences. From a neurodiversity perspective, there is no “standard” brain or “default” way that one should think. There are those who are neurotypical in various ways and those who are neurodiverse. By refusing the binary between “normal” and “abnormal” and between “something’s wrong” and “everything’s fine,” research that centers the experiences of people with disabilities can push back against the harms of epistemic capture and value partitioning.

Clinicians have a responsibility to recognize the authority of people with disabilities as experts about their own lives and communities and to elevate their voices (Reynolds 2018b). Medicine deals with biological processes, not with the meaning-making processes of human life as it is actually lived. The meaning of cerebral palsy, for example, will not be found in medical textbooks; it will be found by listening to those who live with cerebral palsy. Although the role that medical providers play is absolutely crucial in many respects, one of the more important ethical tasks that medical providers have in many cases is to defer to the appropriate expert knowledge: those who have lived experience of what- ever impairment is under discussion. To be clear, this does not mean talking to one person and getting their “take” on “what it’s like.” For over four decades now, a rich literature has grown in the field of disability studies that critically incorporates first- and third-person knowledge about various experiences of disability (Davis 2013). This field spans the humanities and social sciences and can provide significant insight into various sorts of disability experience in a critical, reflective, and more balanced manner.

If the many institutions of medicine are to take the call for social justice and equity seriously, there must be political pressure to make those institutions—and those that surround and support it, from housing to food access, from education to fair labor, etc.—better care for and represent people’s actual needs. Technologies like GSTs have emerged in a larger societal context with massive amounts of inequality and out of a centuries-long legacy of colonization and imperialism that touch nearly every place on the globe. There are many bodily differences that do not automatically lead one to suffer or to be disadvantaged, but, given the world as we find it today, do in fact do require more support—In a just society that holds all humans to be equal, that sup- port would be provided.

I agree with Koury et al. that the principles of evidence-based medicine must guide clinical decision-making, including decisions that involve genetic and genomic information. They write:

Genomics is no different from any other scientific field except perhaps in the sheer volume of new information and technology expected to hit the health care market, and the fact that such information often has implications for the families of those who are tested. Although genomic medicine has been slow in adopting the principles of evidence-based medicine, it still needs to follow the principles of comparative effectiveness . . . the paucity of high-quality studies has contributed to the absence of evidence-based practice guidelines and to the differential uptake and reimbursement of these testing technologies in practice. (Khoury et al. 2008)

Evidence, including that from qualitative sociology, must bear on decisions ranging from how various types of genomic information are communicated to whether certain sorts of information are communicated at all. For example, while I appreciate the work of Lázaro-Muñoz et al. to provide a rigorous taxonomy of debates concerning return of results in genomics, the question of “unknown impact of RoR [return of results] on participants,” as they phrase it, is not taken seriously enough (Lázaro-Muñoz et al. 2018). That empirical issue should, on my view, throw far more doubt on their suggestion—limited in that article to psychiatric genomics research—for providers to offer what they categorize as “likely clinically valuable findings.”

More to the point, the analysis provided here suggests that the issue ultimately turns less on which findings are offered and more on how they offered; this how is not simply with respect to modes of interpersonal communication between providers and patients, important as that is, but also with respect to the epistemic frameworks at play in such clinical encounters. One implication of this study is that the latter concern may in fact be more decisive for health outcomes than the former.

In a study I find crucial to understand the ethical, epistemological, and sociopolitical stakes of GSTs, Werner-Lin et al. note that “novel diagnostic tools are often deployed before targeted therapies are developed, tested, or available” (Werner-Lin et al. 2019). That fact should cause far more pause as a notable body of research mounts suggesting that it is misguided to think that more information is an unqualified good and that, to the contrary, it can in fact cause harm to patients in certain cases. Werner- Lin et al. continue, “this ‘therapeutic gap’ between the ability to conduct genetic sequencing and the ability to fully understand what the test results mean, much less what treatments to offer, leaves families with complex and unclear information they cannot act upon with confidence during pregnancy.” And, I have suggested, this worry extends, at minimum, to pediatric contexts as well. To sufficiently address this issue will require far more research and analysis and must, as I have suggested, extend to interventions that go beyond the clinical space itself.

To recall a concern announced at the outset of this study, “biomedical technology” is a difficult object for epistemological inquiry, including that of GSTs more specifically. Despite its difficulties, it is crucial for medical institutions and society more generally to better understanding the epistemic processes and effects put to work by these technologies. Without such understanding, the increasing incorporation of genomic information into clinical settings runs the risk of inadvertently harming some of the very people it is, however inequitably, currently equipped to help. These are harms that can and should be addressed.18

Footnotes

Of course, the concept of value partitioning could describe a situation where the scale consists of more than two values or where a given set of appraisals operates with an intricate and far more complex relationship than that discussed here.

See “Access to Healthcare,” Centers for Disease Control and Prevention, U.S. Department of Health and Human Services, https://www.cdc.gov/nchs/fastats/access- to-health-care.htm. My thanks to Chris Lebron for graciously leading me to engage these concerns in far greater depth.

A recent study in the European Journal of Human Genetics concluded that “initial evidence suggests that the diagnostic performance of WGS is superior to conventional genetic tests,” such as chromosomal microarray. Although the overall cost-effectiveness is currently unclear, the authors of that study state that “it is expected that technical costs associated with high throughput sequencing will continue to decrease and that diagnostic performance will con- tinue to improve” (Hayeems et al. 2017). A more recent metaanalysis suggested that “among studies published in 2017, the diagnostic utility of WGS was significantly greater than CMA.” The authors also noted that “the diagnostic utility of WGS and WES [whole-exome sequenc- ing] were not significantly different” (Clark et al. 2018). Whole-exome sequencing, in contrast to whole-genome sequencing, focuses specifically on the ~1.5–2% of genes that code for proteins. In summary, it is likely that the clinical use of whole genome and exome sequencing across a wide range of therapeutic contexts will continue to grow in the coming years, over- taking older and more limited GSTs, such as chromosomal microarray. It is also likely that whole genome and exome sequencing will become increasingly incorporated into clinical contexts wherein GSTs were used less frequently in the past and also increasingly used in contexts where GSTs have already made inroads.

See Eric Green, “The Genomic Landscape circa 2016,” part of a conference on Current Topics in Genome Analysis 2016, hosted by the NHGRI on February 24, 2016. Available at https://www.youtube.com/watch?v=mhD3-_5Ee-A.

This last study is with respect to tandem mass spectrometry technology for metabolic diseases, which are screened via a blood sample. I do not have space here to defend this claim, but I would argue that the results hold, ceteris paribus, for my claims about the epistemic framework of WGS/WES/CM.

As an anonymous reviewer rightly pointed out, there is a large literature on risk and on health risks in particular. That literature is surely a boon to understanding situations like these, but I do not have the space to engage it here. A more detailed analysis of the specific role conceptions of risk play in relationship to the arguments presented in this piece would require a future study.

Following scholars in science and technology studies, I take this milieu to ultimately touch upon everything from informatics to economics to local, national, and global politics (Reardon 2018).

This claim is easily substantiated by even a cursory search of any leading genetics- focused scholarly journals. To take one historically momentous example—and one which centrally deploys all of these concepts—see (International Human Genome Sequencing Consortium et al. 2001).

This is a very large literature that I cannot rehearse here, but the following are espe- cially helpful entry points: Kukla (2015), Silvers (1998), and Amundson (2000).

I am grateful to an anonymous reviewer for this point.

It should go without saying that abnormality can be transformed into normality if it fits within a valued social practice.

Eric Schwitzgebel, “The Splintered Skeptic: Eric Schwitzgebel interviewed by Richard Marshall,” 3:AM Magazine, Jan. 20, 2012, https://www.3ammagazine.com/3am/the-splintered-skeptic/.

On this point, see especially Elizabeth Barnes’s arguments for a mere-difference view of disability (Barnes 2016).

To be clear, by the term “domain,” I mean it the sense of “a sphere of thought or action; field, province, scope of a department of knowledge, etc.” OED, “domain, n.” def. 4a. Put simply, I mean a domain as that framework which affords phenomenon interpreted within its scope meaning and does so in determinate or essential ways.

Instructively, few of these fit into ideas of normality or abnormality operative in the production and interpretation of genomic knowledge (Kasnitz and Shuttleworth 2001; Reid- Cunningham 2009). As debates over everything from deafness to neurodiversity evidence, such differing attitudes are alive and well today (Davis 2006; Mauldin 2016).

As Chris Lebron pointed out to me, this is surely a form of disciplining in Foucault’s sense of the term (1979). I sadly do not have space to take up that line of interpretation.

Despite the salutary efforts of caring researchers, part of what is at issue here is the larger failure of translational work to be more inclusive and diverse with respect to public and clinical understandings of genetic variation and its links to human wellbeing (Burke et al. 2011).

Many people helped develop the ideas and arguments presented in this paper. I am very grateful to the following audiences and persons: to all of the participants of the Epistemology of Justice conference held at the University of Memphis. I especially wish to thank Chris Lebron, Elizabeth Anderson, Remy Debes, Keya Maitra, Rebecca Longtin, and Lauren Guilmette for feedback that significantly improved this piece in both form and con- tent. I also want to thank David Peña-Guzmán for providing truly pivotal suggestions and insights and for ongoing and always fruitful conversations concerning epistemic injustice and healthcare. I also with to thank an anonymous reviewer and the editor of the journal for helpful feedback. It was due to a brilliant presentation by Allison Werner-Lin at The Hastings Center that I became aware of many of the studies upon which I focus here. Her work is indispensable, and this paper would not be possible without it. Lastly, thanks to all the fan- tastic scholars and staff at The Hastings Center, where so many of these ideas, concerns, and questions first took root.

References

Alexander, Michelle. 2012. The New Jim Crow: Mass Incarceration in the Age of Colorblindness. Revised edition. New York: New Press.

Amundson, Ron. 2000. “Against Normal Function.” Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 31 (1): 33–53.

Anderson, J. A., M. S. Meyn, C. Shuman, R. Zlotnik Shaul, L. E. Mantella, M. J. Szego, S. Bowdin, et al. 2016. “Parents Perspectives on Whole Genome Sequencing for Their Children: Qualified Enthusiasm?” Journal of Medical Ethics 43: 535–39. https://doi.org/10.1136/medethics-2016-103564.

Barnes, Elizabeth. 2016. The Minority Body. New York: Oxford University Press. Bashford, Alison, and Philippa Levine. 2010. The Oxford Handbook of the History of Eugenics. Oxford: Oxford University Press.

Beckert, Sven, and Seth Rockman. 2016. Slavery's Capitalism: A New History of American Economic Development. Philadelphia: University of Pennsylvania Press.

Bell, Christopher M. 2011. Blackness and Disability: Critical Examinations and Cultural Interventions, Forecaast. East Lansing: Michigan State University Press.

Blease, Charlotte, Havi Carel, and Keith Geraghty. 2017. “Epistemic Injustice in Healthcare Encounters: Evidence from Chronic Fatigue Syndrome.” Journal of Medical Ethics 43 (8): 549–57. https://doi.org/10.1136/medethics-2016-103691.

Burke, W., K. A. Edwards, S. Goering, S. Holland, & S. B. Trinidad (Eds.) 2011. Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit. Oxford: Oxford University Press.

Calvillo, Jorge, Isabel Roman, and Laura M. Roa. 2015. “How Technology is

Empowering Patients? A Literature Review.” Health Expectations 5: 643–52. https://doi.org/10.1111/hex.12089.

Campbell, Fiona Kumari. 2009. Contours of Ableism: The Production of Disability and Abledness. New York: Palgrave Macmillan.

Carel, Havi, and Ian Kidd. 2014. “Epistemic Injustice in Healthcare: A Philosophical Analysis.” Medicine, Health Care and Philosophy 17 (4): 529–40. https://doi.org/10.1007/s11019-014-9560-2.

Clare, Eli. 2017. Brilliant Imperfection: Grappling With Cure. Durham, NC: Duke University Press.

Clark, Michelle M., Zornitza Stark, Lauge Farnaes, Tiong Y. Tan, Susan M. White, David Dimmock, and Stephen F. Kingsmore. 2018. “Meta-Analysis of the Diagnostic and Clinical Utility of Genome and Exome Sequencing and Chromosomal Microarray in Children with Suspected Genetic Diseases.” NPJ Genomic Medicine 3 (1): 16. https://doi.org/10.1038/s41525-018-0053-8.

Coady, David. 2017. “Epistemic Injustice as Distributive Injustice.” In Routledge Handbook on Epistemic Injustice, edited by Ian James Kidd, José Medina, and Gaile Pohlhaus, 61–68. London: Routledge.

Daniels, Norman. 1979. “Rights to Health Care and Distributive Justice: Programmatic Worries.” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 4 (2): 174–91. https://doi.org/10.1093/jmp/4.2.174.

Davis, Lennard J. 1995. Enforcing Normalcy: Disability, Deafness, and the Body. Brooklyn, NY: Verso.

______., ed. 2006. The Disability Studies Reader. 2nd ed. New York: Routledge.

______. 2013. The Disability Studies Reader. 4th ed. New York: Routledge.

Dotson, Kristie. 2012. “A Cautionary Tale. On Limiting Epistemic Oppression.” Frontiers: A Journal of Women Studies 33 (1): 24–47. https://doi.org/10.5250/fronjwomestud.33.1.0024.

Erevelles, Nirmala. 2011. Disability and Difference in Global Contexts: Enabling a Transformative Body Politic. New York: Palgrave Macmillan.

Ferri, Beth. 2010. “A Dialogue We've Yet to Have: Race and Disability Studies.” In The Myth of the Normal Curve, edited by Curt Dudley-Marling and Alex Gurn, 139–50. New York: Peter Lang.

Foucault, Michel. 1979. Discipline and Punish: The Birth of the Prison. New York: Vintage Books.

______. 2008. The Birth of Biopolitics: Lectures at The Collège De France: 1978–79. London: Palgrave Macmillan.

Fricker, Miranda. 2007. Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford University Press.

Garland-Thomson, Rosemarie. 2012. “The Case for Conserving Disability.” Journal of Bioethical Inquiry 9 (3): 339–55. https://doi.org/10.1007/s11673-012-9380-0.

______. 2015a. “Eugenics.” In Keywords for Disability Studies, edited by Rachel Adams, David Serlin, and Benjamin Reiss, 215–26. New York: NYU Press.

______. 2015b. Human Biodiversity Conservation: A Consensual Ethical Principle. The American Journal of Bioethics 15 (6): 13–15. https://doi.org/10.1080/15265161.2015.1028663.

Grob, Rachel, Scott Roberts, and Stefan Timmermans 2018. Families' Experiences with Newborn Screening: A Critical Source of Evidence. Hastings Center Report 48: S29–S31.

Hayeems, Robin Z., Jasmin Bhawra, M. Kate Tsiplova, Stephen Meyn, Nasim Monfared, D. Sarah Bowdin, James Stavropoulos, et al. 2017. “Care and Cost Consequences of Pediatric Whole Genome Sequencing Compared to Chromosome Microarray.” European Journal of Human Genetics 25 (12): 1303–12. https://doi.org/10.1038/s41431-017-0020-3.

Hookway, Christopher. 2010. “Some Varieties of Epistemic Injustice: Reflections on Fricker.” Episteme 7 (2): 151–63.

Houwink, Elisa J. F., Lidewij Henneman, Myrte Westerneng, Scheltus J. van Luijk, Martina C. Cornel, Jan Geert Dinant, and Cees van der Vleuten. 2012. “Prioritization of Future Genetics Education for General Practitioners: A Delphi Study.” Genetics in Medicine 14 (3): 323–29. https://doi.org/10.1038/gim.2011.15.

International Human Genome Sequencing Consortium, Eric S. Lander, Lauren M. Linton, Bruce Birren, Chad Nusbaum, Michael C. Zody, Jennifer Baldwin, et al. 2001. “Initial Sequencing and Analysis of the Human Genome.” Nature 409: 860. https://doi.org/10.1038/35057062. https://www.nature.com/articles/35057 062#supplementary-information.

Jay, Bethany, and Cynthia Lynn Lyerly. 2016. Understanding and Teaching American Slavery. Madison: University of Wisconsin Press.

Johnston, Josephine, and Eric Juengst. 2018. “Are Parents Really Obligated to Learn as Much as Possible about Their Children's Genomes?” Hastings Center Report 48: S14–S15.

Kahneman, Daniel. 2013. Thinking, Fast and Slow. New York: Farrar, Straus and Giroux. Kasnitz, Devva, and Russell P. Shuttleworth. 2001. “Anthropology in Disability Studies”. Disability Studies Quarterly 21 (3). https://doi.org/10/gfkmbd.

Khoury, Muin J., Al Berg, Ralph Coates, James Evans, Steven M. Teutsch, and Linda A. Bradley. 2008. “The Evidence Dilemma in Genomic Medicine.” Health Affairs 27 (6): 1600–11. https://doi.org/10.1377/hlthaff.27.6.1600.

Kidd, Ian James, José Medina, and Gaile Pohlhaus, eds. 2017. Routledge Handbook on Epistemic Injustice. London: Routledge.

Kittay, Eva. 2016. “Deadly Medicine: Project T4, Mental Disability, and Racism.” Res Philosophica 93 (4): 715–41.

Koopman, Colin. Forthcoming. “Coding the Self: The Infopolitics & Biopolitics of Genetic Sciences.” The Hastings Center Report Special Issue.

Kukla, Rebecca. 2015. “Medicalization, ‘Normal Function’, and the Definition of Health.” In The Routledge Companion to Bioethics, edited by John D. Arras, Elizabeth Fenton, and Rebecca Kukla, 515–30. New York: Routledge.

Lázaro-Muñoz, G., M. S. Farrell, J. J. Crowley, D. M. Filmyer, R. A. Shaughnessy, R. C. Josiassen, and P. F. Sullivan. 2018. “Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research.” Molecular Psychiatry 23 (1): 15–23. https://doi.org/10.1038/mp.2017.228.

Lindsey, Elizabeth. 1996. “Health within Illness: Experiences of Chronically Ill/ Disabled People.” Journal of Advanced Nursing 24 (3): 465–72. https://doi.org/10.1046/j.1365-2648.1996.02135.x.

Lombardo, Paul A., ed. 2011. A Century of Eugenics in America from the Indiana Experiment to the Human Genome Era. Bloomington: Indiana University Press.

Maina, Ivy W., Tanisha D. Belton, Sara Ginzberg, Ajit Singh, and Tiffani J. Johnson. 2018. “A Decade of Studying Implicit Racial/Ethnic Bias in Healthcare Providers Using the Implicit Association Test.” Social Science & Medicine 199: 219–29. https://doi.org/10.1016/j.socscimed.2017.05.009.

Mauldin, Laura. 2016. Made To Hear: Cochlear Implants and Raising Deaf Children. Minneapolis: University of Minnesota Press.

McWhorter, Ladelle. 2017. “From Scientific Racism to Neoliberal Biopolitics Using Foucault's Toolkit.” In The Oxford Handbook of Philosophy and Race, edited by Naomi Zack, 282–93. Oxford: Oxford University Press.

Miller, David T., Margaret P. Adam, Swaroop Aradhya, Leslie G. Biesecker, Arthur R. Brothman, Nigel P. Carter, Deanna M. Church, et al. 2010. “Consensus Statement: Chromosomal Microarray is a First-Tier Clinical Diagnostic Test for Individuals with Developmental Disabilities or Congenital Anomalies.” American Journal of Human Genetics 86 (5): 749–64. https://doi.org/10.1016/j.ajhg.2010.04.006.

Mills, Charles. 2005. ““Ideal Theory” as Ideology.” Hypatia 20 (3): 165–84.

Nielsen, Kim E. 2012. A Disability History of the United States, Revisioning American History. Boston: Beacon Press.

Pohlhaus, Gaile. 2012. “Relational Knowing and Epistemic Injustice: Toward a Theory of Willful Hermeneutical Ignorance.” Hypatia 27 (4): 715–35. https://doi.org/10.1111/j.1527-2001.2011.01222.x.

Reardon, Jenny. 2018. The Postgenomic Condition: Ethics, Justice, and Knowledge after the Genome. Chicago: University of Chicago Press.

Reid-Cunningham, Allison Ruby. 2009. “Anthropological Theories of Disability.” Journal of Human Behavior in the Social Environment 19 (1): 99–111. https://doi.org/10/d9m87r.

Reiheld, Alison. 2010. “Patient Complains of . . . : How Medicalization Mediates Power and Justice.” International Journal of Feminist Approaches to Bioethics 3 (1): 72–98. https://doi.org/10.2979/FAB.2010.3.1.72.

Reynolds, Joel Michael, and David Peña-Guzmán. 2019. “The Harm of Ableism: Medical Error and Epistemic Injustice.” Kennedy Institute of Ethics Journal 29 (3): 205–42.

Reynolds, Joel Michael. 2018a. “Renewing Medicine's Basic Concepts: On Ambiguity.” Philosophy, Ethics, and Humanities in Medicine 13 (1): 8.

______. 2018b. “Three Things Clinicians Should Know About Disability.” AMA Journal of Ethics 20 (12): E1181–E1187. https://doi.org/10.1001/amajethics.2018.1181.

Ross, L., & Solinger, R. 2017. Reproductive Justice: An Introduction. Oakland, CA: University of California Press.

Silvers, Anita. 1998. “Fatal Attraction to Normalizing: Treating Disabilities as Deviations from “Species-Typical” Functioning.” In Enhancing Human Traits: Ethical and Social Implications, edited by Erik Parens, 95–122. Washington, DC: Georgetown University Press.

Smith, Kate. 2019. “Abortion would automatically be illegal in these states if Roe v. Wade is overturned.” CBS Interactive Inc. Accessed April 30. https://www.cbsne ws.com/news/new-abortion-law-abortion-clinic-automatically-illegal-roe-v-wade-overturned-2019-04-22/.

Timmermans, Stefan, and Mara Buchbinder. 2010. “Patients-in-Waiting: Living Between Sickness and Health in the Genomics Era.” Journal of Health and Social Behavior 51 (4): 408–23. https://doi.org/10.1177/0022146510386794.

Waldschmidt, Anne. 2005. “Who is Normal? Who is Deviant? ‘Normality’ and ‘Risk’ in Genetic Diagnostics and Counseling.” In Foucault and the Government of Disability, edited by Shelley Tremain, 191–207. Ann Arbor: University of Michigan.

Washington, Harriet A. 2008. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Anchor Books.

Werner-Lin, Allison, Judith L. M. McCoyd, and Barbara A. Bernhardt. 2019. “Actions and Uncertainty: How Prenatally Diagnosed Variants of Uncertain Significance Become Actionable.” Hastings Center Report 49: S61–S71. https://doi.org/10.1002/hast.1018.

Werner-Lin, Allison, Sarah Walser, Frances K. Barg, and Barbara A. Bernhardt. 2017. “‘They Can't Find Anything Wrong With Him, Yet': Mothers' Experiences of Parenting An Infant With A Prenatally Diagnosed Copy Number Variant (CNV).” American Journal of Medical Genetics 173 (2): 444–51. https://doi.org/10.1002/ajmg.a.38042.

Wolfe, Patrick. 2006. “Settler Colonialism and the Elimination of the Native.” Journal of Genocide Research 8 (4): 387–409. https://doi.org/10.1080/14623520601056240.

#bioethics #technology #biotechnology #epistemic injustice #genomics #law #genetics #disability #ableism #abortion #reproductive justice #reproductive freedom #value #health parity

1 note · View note