As some of you might have seen on my socials already - my adsense was shut off without warning due to an unknown error around three weeks ago. Adsense is how creators get paid, and without it you don't get a penny from views or ads run on your videos, so I've now had three weeks with no income from TH-cam. So, if you've ever considered supporting me on Patreon or tipping on Ko-fi now is the literal perfect time 😅 💙 patreon.com/rowanellis 💙 ko-fi.com/rowanellis Some recent comments on my Patreon by supporters by way of evidence that it's a great time over there and the perks are rad: BTS videos: "I am loving the behind the video insights - I went the business route after graduation and you don’t get into many deep conversations that way. I did not realize how much I missed it until I started watching you. Plus now I get the added bonus of it being queer! Just perfect." Rec Lists: "Your rec lists are always phenomenal. I'm taking notes." Care Packages: "I can only imagine the degree of effort and commitment it must take for you to personally reach out so often to so many people, but please know that each touch is meaningful to me. While I also support other creators on Patreon I honestly believe that you are the only one who actually knows my name. While that may not equate to anything of note in real life, I can assure you that it absolutely does within the Patreon bubble."
I was taking classes for hair and skin care for a bit. The teacher asked for a volunteer to get under the magnifying glass and i volunteered cause I thought my big pores would be a good variation as an example. She and all the class were horrified and demanded I swap out with someone else. My pores aren't even that bad. I was so baffled cause like, what if I had been a customer?? That's how you'd behave????
plus literally EVERYONE has pores omg??? most people would look similar under a magnifying glass. this idea that normal human skin makes you ugly or disgusting is so frustrating.
BRUHHH I used to be in cosmetology school and the stupid teacher had a similar thing, not just a magnifying glass but it also like had a UV light or something idk but it was meant to "reveal all your flaws" LOL and people were like going under it and everyone was like wowww look how bad / look how good her skin looks asodjawshjfuhfukahfhawiufghi
Two random thoughts: -"Rudolph the Red-Nosed Reindeer," funnily enough, seems like an example of the idea that visible difference is only acceptable if it's "useful" in some way. -Shrek can definitely be read as a story about the experiences of a person with a congenital "disfigurement" (being a "big ugly ogre" in this case) falling in love with a person with a person who wasn't born disfigured but became so later in life and unpacking what it means to be visibly different in this world. I'm honestly glad it was a formative film of my childhood.
I thought of Shrek too when Rowan talked about the Beauty and the Beast examples, because not only does Shrek reiterate the message that "naw, your true self is valuable and good actually", it (Shrek 2, rather) even includes a segment where Shrek and Fiona ARE changed to look conventionally attractive and then their happy end is reverting to their true selves. Which like... shouldn't be so rare and refreshing I suppose, but it's wonderful nonetheless.
I do disability advocacy in my college, and one of my friends who I work on this made a fanzine explaining ableism through Shrek. It's the one that people take the most, I think in part because we've all related to Shrek in one way or another so it's a good way to introduce ideas about disability or disfigurement to those who are not familiar with it
the first time i watched the wizard of oz when i was a kid, i remember that when glinda said "only bad witches are ugly" or something to that effect, my mom said to me: this is what's wrong with the entire culture of the US. they are convinced that statements like these are true.
One of the things I love about Wicked is that it adds a layer of understanding that Glinda is a product of that sort of culture, but also doesn't fully believe it and it just participating in the propaganda for her own benefit and to do what she can for Elphaba.
As disabled kids, we grow up not seeing ourselves as anything but villains. Captain Hook. Scar. Darth Vader. Every Bond villain. Somehow, physical disabilities became shorthand for evilness, in the same way as Russian accents. And if you see a good guy with a disability, you can bet it’s a limb difference that then has a perfect prosthetic that makes it impossible to tell the difference. Yes, I’m looking at Luke skywalker and Bucky Barnes. When all disabled ‘rep’ was done by abled people for so many years, you end up with stereotypes, disabled people are always childlike and innocent or evil and heartless, and both of those necessitate not having any emotional depth. And then abled people don’t ever interrogate the fact that they view any disabled character as ‘asexual coded’, not because they’re actually ace coded, but because they’ve been taught that any time they see a disabled person in media, they do not have any relationships.
To add, Ashley from the Evil Dead series is pretty much the only good guy missing a limb that doesn't get a perfect prosthetic that I can even think of. Not great that I can only really think of one, maybe.
That's actually sad, one person I know, who truly is a good person, used to tell me about her high school friend group that she used to have. There were three boys and three girls and they were all not very popular (although not bullied either). One of the girls had achondroplasia. I asked jokingly if they ended up forming three couples inside of that group, and that person was like 'Well...no. That girl was a dwarf'. As if it made her unlovable...I hope she did find someone who'd love her in that way. We all deserve that.
I think one of the best disability representations in a family film is Massimo from Pixar’s Luca. There’s no tragic backstory for his missing arm; he was just born like that. The filmmakers even took into account how this disability would affect Alberto; he spends so much time around Massimo that he unconsciously eats one-handed. There’s something so delightfully matter-of-fact about it all.
In small town Nebraska I was relentlessly bullied because of my face, adults did nothing to stop it and often encouraged it. These same people would go on for hours about how much they “loved Christ”
Also grew up in small town Nebraska... having Neurofibromatosis also made me a bit of a outcast - people/kids thinking my skin bumps potentially contagious
Thats so real. Born with a cleft or a facial deformity, its hard because you know you look the way you do, and you know exactly why people stare, exactly why they dont sit next to you.
I was also bullied in Nebraska. I was genuinely surprised that when I moved somewhere else, nobody treated me nearly as badly as those kids did. It was crazy
I think we’re more socially accepting of “cool” didfigurements like scars or even (to a lesser extent) loss of limbs because we haven’t been made to immediately associate them with things like shorter life expectancy.
To add to this, people often associate these kinds of disfigurements a SURVIVING something. People are far more empathetic towards people that *became* disabled/disfigured later in life, instead of born as.
I have a scar going from my hairline, through my eyebrow and down to my cheek (sleepwalking lmao) and have 100% noticed this. As a man with a very stereotypical scar, I've gotten nothing but compliments. A few children get a little apprehensive but it's to be expected. I've gotten way more negative feedback from the vitiligo on my body and the spots aren't visible unless I'm about to swim
I think Vitigilo (and similarly, Piebaldism) looks really cool. Albinism does too, but I've heard it comes with more health issues, so I feel bad for people with it.
@galaxychill9578 I'd agree (heavily biased 💀) but I cannot keep track of the amount of weird comments. I'm glad more people like you are seeing the beauty in this though
I was born with facial palsy. I never knew a life where I haven't felt different, not only physically, but because once you have such a distinctive feature it's hard to accept anything else you might be. Being queer and neurodivergent is coloured by also having FP. I always loved acting and I'm a musician but it's something I can't seem to pursue because of how performative arts are connected with body image. The other day I realized I don't even get to age normally, since only half my face is developing wrinkles. So when we see disfigured characters that are always anything but normal, it takes a toll on our self image. We're not villains, but we aren't heroes either. We're not brave or saints for existing, and we are not bad people if we have unhealthy coping mechanisms. It's a fine like between wanting to feel normal but also being ok with the fact that we will never be.
Pretty much this. I love joking about myself and getting called a T-Rex and having really horrible self-deprecating humor (like the millions of patches and lyrics all over my battle vests for concerts. I have had people taking pics of my vests and laughing at some of the horrid jokes at my own expense) and I enjoy it cause if I can't enjoy my own pain then who can? But at the same time, it would be cool to get to keep being a chef and having hands that aren't the living equivalent of the movie "Idle Hands". But then I think of sacrificing my unique "lizness" (as my old surgeon called it) and then it's a neverending loop.
54:28 Oddly enough, I think Shrek is one of the few examples where that's not the case, because Fiona gets transformed into her 'ugly' ogre self permanently instead of her 'beautiful' human self. I guess it's a bit different because Shrek is an ogre as well, but they did fall for each other's personality more than for their looks ☺️
Shrek is kinda like my current relationship, in that my husband and I fell in love for personality and then over time I got more and more disabled than I already was and he still loves my personality and doesn't even see any of the physical changes cause "I am still me" in his eyes even if I've had organs removed or my arms don't move as well or my teeth are damaged, etc.
My personal problem with invisible illnesses and disabilities, is that no one believes you that you are sick. Or they pity you momentarily and forget about it, because they’re not visually reminded and then think you’re whining or over exaggerating. There are also a lot of misconceptions about like ADHD, because it’s not just needing to run around the block a few times. It’s harder to idolise and fetishise and humiliate something you cant’t see.
I was told that I need to read the Percy Jackson series as it expertly handles ADHD in the main character of Percy. Rick Riordan's son has both ADHD and dyslexia, and Riordan wanted to create a character that was brave, intelligent, empathetic, funny, and loyal but also just happened to have ADHD and dyslexia.
@@edamamame4U You absolutely do, whoever gave you that recommendation is entirely right. I am autistic and adhd and they handle both really well. Percy sometimes has mean (but realistic) thoughts about the autistic character, and over and over again he is proven wrong in his assumptions, and acknowledges that. Both characters are in fact funny and kind and smart kids, even (and especially!) when their smarts are different. It's a very wholesome and delightful read.
I don't know... Tiktok would beg to differ. Everyone and their mom thinks they have ADHD or hEDS or some other invisible condition and makes up lies and "how great life is" with these conditions; both of which I have professionally been diagnosed with and both of which have done nothing but wreck my life, but yep... I love em. *eyeroll*
@@NoOneReallySpecial TikTok is a vacuum. I know it seems like there are lot of people, but at a very early point it’s just the Algorithm sending you the same stuff. And I’m also very sure that a lot of those use it as a marketing ploy to get more people to follow them. I think self diagnosing is valid, I did so too before getting the diagnosis from my psychiatrist and never would have gone without it. But you need to differentiate between those who are honest about the symptoms and want to learn more, to help themselves and understand themselves better and then the rest who hops on themes that are ‘in trend’ to get attention. There is also a whole lot of people who think autistic people are gods from another planet, if you believe TikTok. But if you go out and talk about it at your work/school etc, there is still a lot of misunderstanding and stigma or just plain ignorance. A former work colleague told me her son was diagnosed, but he just needed to run outside a little more and all was fine. I honestly, sincerely doubt that. And if you talk to younger people there can be just as many misconceptions, because they rely on TikTok as a source. But you wont get better treatment, because they’ll thinks it’s still easy to handle and that you’re overreacting.
I'm prone to getting lots of acne and have acne scars on the side of my face. I'm so tired of hearing my parents cringe at the blemishes on my face like they're detrimental to my appearance, and I'm also so tired of hearing that acne is something I 'shouldn't have anymore' as if it starts and stops at teenage years.
Same, I think it's a hormonal problem for me (I have some other issues besides the acne) but I get so much shit about it from some of my family members when I get a particularly bad flare up. They literally treat me like I have some horrific disease and constantly make rude comments about the acne
I'm 34 and still get it since I had hormonal issues (endometriosis was one of the big factors) and I found that having good meds and then those pimple patches honestly really does a number for me mentally. I found the most cutest ones that are little ghosts that glow in the dark! I wear those on important days and stuff when a huge pimple pops up and then usually if people comment on it, they just say "omg that's so fun! I wish I could have that much fun whenever I deal with my acne" and then I tell them where to get the patches and everyone seems much happier.
An example of non-moral facial disfigurement in fiction, is Mortal Engines: the love interest/deuteragonist of the series has a large scar across her face, described as "hideous" and in detail. Her entire life is affected by it, including her ability for facial expressions. The adaptation (bad in so many ways) decided to tweak this into a barely noticeable, small scar on the cheek on an otherwise conventionally attractive, clean face.
@@octochan And the love interest in "It's Kind of a Funny Story" which really made me mad cause I was actually looking forward to it being a good movie cause I loved the book and my sister was going through a mental breakdown when she read it and really loved it, too.
Yes, I even remember it went from her eye to her mouth. And I HATED the movie! It was absolutely pathetic. They really flopped on Hester's scar like a bunch of cowards.
I would like to politely disagree with 54:38, and say that honestly I don't think that the disfigured person is even centred in their transformation. I feel, if anything (in romcoms for sure), that it's portrayed as a reward for the other party, that, having overcome their qualms about disfigurement, they are rewarded with a conventionally attractive relationship. It almost suggests that you can 'fix' disfigured people by simply ~loving~ them, which is so contradictory. But I mean to say that it comes across as a moral reward either way. Either the conventional love interest is rewarded for their lack of shallowness by... having an attractive partner. Or the disfigurement is healed as a reward for doing something nice/ becoming a better person, implying that the disfigurement was the result of poor morals in the first place. Odd and cruel either way.
Pretty much this. Now... if we could get a Shallow Hal-esque portrayal where they at first see them as pretty then see them as they really are but then still view them "as their internal beauty" that would be an interesting take on this trope which I sadly would actually like to see, since I've had some very shallow/self-centered "pretty" people/co-workers who got to know me tell me "your internal beauty just shines and overwrites your external flaws and now that I know you that's all I really see".
crazy how much this resonated with me as a trans man with no real visible disfigurements other than the fact that.. well.. im very visibly trans and autistic. what Mikaela said about bullying is soo true... in adulthood its not the bullying that affects my social life, its the LACK of invites, the lack of people reaching out since i came out, the difference in the way they speak to me..... etc etc etc.. loved this video
I also have similar acne problems and severe Endo... and I am sitting here paused at 27:03 asking myself "HOLY FUCKING SHIT?!? Which would I choose... Endo or Acne???" Can't bring myself to hit play and here your answer til I can answer this myself... This is a seriously hard question that has me crying as it's really not something I'd ever considered. My gut reaction was I'd keep the Endo, get rid of the acne... Endo being internal makes it feel like its an integral part of me that can't change... whereas the acne feels like it's not "part of me" and more like something that just happens to me and something I should be able to fix... so please, take that away. But then my logic kicks in and I remember how much I've lost due to endo... far mor then I ever lost due to pimples... I know the logical choice is get rid of Endo, keep the acne... But no... I couldn't do the logical thing here... If I was somehow magically given that choice... I think I'd keep the endo. Time to hit play then I guess.
I legit feel oddly comforted to know you chose the same thing after I hit play... Thank you for this video... hard looks at oneself are never easy. And considering the emotional roller coaster I'm feeling right now, I'm sure it must have been much harder to make a video and be public about it. Thank you for being brave for those of us who can't.
It's a looping and neverending cycle. Like, I would probably choose the lesser of the two evils, but then when I think back on my PTSD and the bullying I gained from outward issues versus internal then it's like "hmm...." but then I go back to how much my life changed cause of internal stuff and then I feel like I have an answer but then...
I think that the warrior cats fandom is wonderful since two disfigured characters, Briarlight and Brightheart (brightheart with a massive scar across half her face and a missing eye, and briarlight with paralysis in her back legs) are actually some of the most well loved in the series and are showed as happy and uplifting characters. I have mixed emotions about them as some have argued they’re only there for an “inspiring” plot point, but I think it’s a beautiful thing how the community loves these characters so much compared to a lot of other communities
They're not the only ones. Jayfeather's blind. Characters age & as they get old, some become disabled & still are important parts of their community. Brightheart is also a really great character because she adapts to her disability, is still desirable, has a mate, offspring & an important role in her clan.
@@bigendaliver and for a book series that is famous for killing off disabled characters in horrific ways and has a really consistent "disabled people are second class citizens" rhetoric too -someone who has read the books LMFAO
I remember being a child and treating a family member who was a burn survivor like they were a monster because of how the media had taught me to view people with disfigurement. I'm sure that I destroyed her self-worth for a very long time but I matured, apologised and worked to repair what I'd done. not my brightest moment.
It really hit me as someone who also didn't really consider themselves as disfigured for a long time. I had a strawberry birthmark on my lip as a baby, it was quite large, but mostly a cosmetic blemish. The swelling would've probably gone away on its own eventually, but it was less certain whether the pigmentation would. My parents decided it would be best for me to undergo a laser treatment for fear of how I'd be treated by other children - *I* don't remember being treated badly by other kids, but my mother tells me that their parents would ask what was wrong with me (in so many words). It's something that's affected how I feel about a lot of things - plastic surgery, body image, etc. I can't imagine my face without it, and despite technically having the opportunity to get further laser treatment to reduce the scarring, I don't feel a strong desire to because beyond an Observer's judgement, it feels needless and said judgement is not a large influence on me, in part because I think said disfigurement has given me some positive body image feelings, or at least some resilience. It's strange, too, because despite being a more obvious disfigurement (my lip is partly bleached, there's scarring where my lip/nose bridge together that is self-evident!), guess what I *was* bullied for? acne! of all the things.
Agree with Michaela that anti-bullying programs are mostly stuff we should be implementing in educational programs in different ways. Think that normalization is the way to go, but this could be difficult for the individuals who would be the most visible for so many reasons. Thanks for the video Rowan, lots of things to think about
I’m fat and always have been. The discussion about the overlap between disfigurement advocacy and fat liberation was amazing to hear, but the part that really hit home for me was when Bronwen talked about being offered cosmetic surgery. I’ve been told I need to lose weight all my life, all by well meaning people who just want the best for me. I also have endometriosis, and am undergoing a massive shift in my treatment plan that my OBGYN excitedly told me might also cause me to lose weight, since I gained a bunch over the decade plus I was on the pill. It’s been absolutely terrifying to consider, because it feels like it’s going to prove everyone who told me to lose weight RIGHT. Like, am I not worthy as I am now? Am I not a human being already? The answer could very well turn out to be “no” in the eyes of everyone around me, and I am absolutely terrified of that.
I relate to this so hard right now. I’ve been put on a weight loss medication because of a different health issue it also treats. I feel like a hypocrite-my thesis is about fat stigma! I lost a ton of weight years ago and looking back, I was treated so much better. People told me I looked so good, repeatedly, making it very clear I am not healthy or good looking now or when I was fat before. They opened doors for me, flirted, smiled even. It’s demoralizing knowing my body is my worth to others. And if I lose weight, what does that say about my beliefs about fat liberation?
@Cocoanutty0 Yes, this exactly! I've seen people not only be treated better after losing weight, but start treating me worse for not having done the same. I really, really, really hope, if I do lose weight, I don't do the same to others. It's awful. But, by the same token, we can make sure we uphold our beliefs, even if our bodies change. We're in charge of how we behave and how we treat those around us, and we don't have to lose that just because we're not exactly the same as we were before. That's the most hopeful thought I have about it, to be honest.
See, one of the things I always think is that if I got surgery to look better for the world/prove the world wrong, the world would still find something to hate about me and on top of that, I would probably not be as happy as I was before (in my case, it's fixing my teeth. between my jaw deformity, gum disease, cavities, and TMJ it would cost over $20k just to get braces to make me pretty for the world... that's the same cost as my college education all for what? the approval of invisible people?) and that's not even factoring in money and the fact that fixes could fail; since all my other surgeries have. So what you really want to do is have surgeries for yourself; whether for cosmetic or health reasons. Because honestly the world will never be fully happy with you, so you need to be happy with yourself. I say this as someone with a thyroid issue and having had a hysterectomy cause of endometriosis. I went through hell in high school hating myself and being Anorexic; at my smallest I was a size 0 and 95 pounds and too unhealthy to donate blood and would pass out just walking. So then when I started having surgeries and falling apart and gaining the above, I gained weight and no matter what size I have been, the world has looked down on me and hated me. So whatever you do, do it for yourself and even the ones you love but not for the world. Ignore the world cause it doesn't have your best interests at heart.
Puberty started early for me, and I got dozens of stretch marks as a 9 year old, and they’ve just collected themselves ever since. Any time my body changes size or shape, I get more. They don’t bother me as a 30 year old in an almost decade long committed relationship, but they crushed my confidence growing up. They’re not even particularly well represented in fat positive spaces. Like, yeah, I’m big and beautiful in this bikini, but no one wants to see those, so I better find a strategic coverup. Seeing Target ads including stretch marks made me cry.
I have chest deformity big rib flare at the bottom and severe sunken chest at the top. The sunken chest has been surgically corrected because it became unstable due to eds and kept sinking in further abd further crushing my lungs and heart. Pushing my heart down into my stomach, stretching my diaphragm, irritating my stomach into gastroparesis. So much fun. But all people saw was how ugly it looked. My insurance refused to pay for the surgery for 2 years since it’s only an aesthetic desicion, which it wasn’t for me at all! I had less than 50% lung and heart function left from the crushing and I was starving. Still people only saw the visuals and judged me for it. From telling me I don’t need the surgery to talking me I shouldn’t go out in public because it’s disturbing to look at. (It was visible through most clothes) I also have acne (3differejt types) but I had less mean interactions with people from that than from the pectusexcavatum and rib flare.
This shows the long term effects of ‘ugly’ laws. So many people are so used to never seeing disabled people in public or in media, because it was actively illegal, that they never learnt that disability is just a normal human thing.
As a fellow eds person ( I just deal with my ribs popping out) it's not much but just know you've got my silent support. Insurance is stupid. It took 16 failed surgeries before they finally got me in to an occupational therapist who was like "oof you have hEDS and a lot of surgeries could have went well if they had just taken the time to care" but my insurance didn't want to get me in; they just wanted to fix a problem and get rid of me. I hope you are doing ok and not in a lot of pain and suffering right now.
@ one rib was near the top on the front was popped out after pectus excavatum correction surgery, and they didn’t listen to me about that either. I managed to get it back in after 3 days, becasue at least it was popped outwards and not inwards so I did 3 days of very gentle and weak pushing. You never know what you need your ribcage for until it hurts so bad you thing you might die from pain. Like even hand movement and holding my phone was almost too much for the first week after surgery. And I got one rib near the bottom that’s always been popping in and out, but that doesn’t really bother me, it’s the structurally important ribs that are bad when they pop out.
I worry that becoming disfigured will make my loved ones withdraw from me and rescind their affection and care. I used to think Metamorphosis was a bit hyperbolic (you know, for the message's sake) but no... that's real. I've seen it. People you never would've thought capable of it will suddenly pull away when you become ugly and inconvenient, and you will die (emotionally at least) like an insect on its back, legs thrashing.
Just know that not all people are like this, fortunately. My family has mental problems they need to work on, but NONE of us have abandoned each other. My dad is a hunchback from needing several spines replaced with metal ones. I have slowly deteriorated over time due to underlying birth defects. My mother's stomach and organs are just dangling down into her legs due to her stomach lining failing and thus her whole body just herniating. Everyone in my family has either (and in some cases both) become mentally or physically changed over time and yet we have never stopped loving each other unconditionally. The same thing can be said for my husband of 17 years, both of my brother-in-laws (in the family for 12 and 6 years but we've known one of them for 20 years) and my small circle of friends who has seen me at my lowest and highest points; and I have seen a few deliver kids (this go through bodily changes) or become paralyzed or transition. Real love, whether familial or romantic or platonic/friendship, withstands the tests of life and ignores how you change.
Hey, Rowan, I dunno if you’re going to see this, but I want you to know how much this video means to me. I was born with a cleft lip and palate, and despite our experiences with disfigurement appearing so different, you managed to capture my own thoughts and feelings so well. Especially with the Q&A of Aaron Schimberg. It really spoke to me. Also the comments have been so validating. This entire video made me feel safe.
It's kind of baffling how we attribute any type of disfigurement with evil. I knew my step-grandma's dogs, a Pomeranian and some sort of toy poodle breed mix named Miffy. She did get her face messed up before and also was born with a deformed back leg as a puppy, I knew someone that said she would grow up to be like her mom, mean and vicious; all because of some deformity she was born with.
Woof the comment about bullying not being an issue in your adult life, it suddenly becomes other stuff that's much harder to dig out and talk about. I have a skin condition that makes my limbs and face constantly covered in scratches, scars, rashes, and pimples. Sometimes it's fine, sometimes it's agonizing, but mostly it's a lot of getting asked if I'm feeling okay because I look "red in the face" or someone noting that I'm dripping blood onto the floor from an arm wound that's opened up without me paying attention. I was subject to a fair bit of the "getting asked out as a joke/dare" thing as a kid, but that stopped being actually traumatic levels of shitty after the third time or so, but my co-workers constantly treating me like I'm fragile or a bloodborne disease risk just keeps going forever as far as I can tell. Oh well, c'est la vie, I guess.
High school never ends. And bullying just becomes a different type of "bullying" in adulthood. People look at me funny and do this "hee-haw" motion or similar gesture at me whenever I look at them and that's how I know I am getting made fun of for my teeth. I get told "they are not, it's all in your head" by some people, yet others have seen it and try to explain it away and it's hard to explain it as anything but bullying especially when kids would do the same thing but actually made donkey sounds at me.
23:06 "Perfect design of the universe"?! Then why are so many people's periods painful? Why do we have a useless appendix that can get life-threatening infections? Not so perfect after all!
Actually we seem to have changed to thinking the appendix might have a purpose now. There are also way bigger imperfections in nature - for example, there's a nerve that connects the brain to the larynx. It goes all the way down into the chest, loops under the heart, and comes all the way back up to the neck. Which is already silly in humans, now think about how giraffes have the same thing. It was a good way to do the nerve in our fish ancestors, but as the heart and larynx moved further apart, it was never enough of a survival problem to evolve something more sensible.
Whilst still a theory there's a notion that the appendix acts a bacterial storage unit, which may replenish the gut microbiome after an insult, such as illness or antibiotics.
The optic nerve come out right through the retina, so we have a sizable blind spot right in the middle of our vision. Our brains kind of fill in the details so that we don't tend to notice it. But if you're looking directly at a dim star at night, you'll have trouble seeing it unless you look slightly to the side of it. Octopuses and squids et al evolved eyes separately and don't have this blind spot.
@@newsjunkie7135 the bible has an explanation, it’s obviously adam and eve’s fault! so now billions of people have to suffer for two people’s curiosity and disobedience, soooo just and fair
As an autistic person with a somewhat lack of facial expression, the deadpan uncanny look of an autistic person can feel like a disfigurement sometimes. Like I don’t have the facial fitness to express my true feelings and emotions.
I used to have this problem but I noticed recently that my eyebrows have become way more expressive. Especially my right eyebrow. I think bingewatching doctor who made me absorb the ability to make quizzical faces.
I mean, the fact that it's called "masking" when someone expresses and communicates in a more neurotypical way might point at the facial differences between the two modes
I also have a flat affect, pointed out by almost all my medical providers. It’s kinda awkward since, like, It’s not something I’m actively doing on purpose? Facial and fine motor control has also been a delay and hardship, so I hope I empathize with you similarly
@@dombo813 oh my gosh, same, for some reason eyebrows are way easier to emote with for me so i usually focus on emoting with those instead of anything else. also absorbing expressions from media is good but also evil because i exclusively watch cartoons so now im cursed with trying to imitate cartoon expressions
my mum has cleft lip and growing up I didn’t understand why she was insecure as it was obviously just how she had always looked, i didn't recognise her as having a visible difference as she had literally been one of the fist people i ever saw, it's still hard for me to wrap my head around it if I'm being honest. just my slightly off topic comment that is think is about social influences
I have a similar thing with both my parents. My mum has a few patches of different coloured skin, a big one on her cheek. My dad has a lazy eye. I don't think either of them are particularly insecure about it, I didn't even properly register it might be thing people view negatively about them until I was a late teenager. I like the way both of them look.
even more off topic, but i can really relate to this! i grew up with a physically disabled mother (was ill since i was born, started using a cane when i was about 8 and later a wheelchair). because i was so used to her being tired all the time and unable to run or go out too much, i used to get weirded out when other mothers did. i remember being 5 or 6 and being weirded out when i saw my friend's mum running to catch a ball. i started noticing other people making fun of her mobility aids or overhearing that people thought she was drunk because she has bad balance, and i didn't understand why, because that was just normal to me. and it's not like i wasn't socialised either! but i think you have a real point that the people you grow up around in your formative years can make a real impact on how you see the world
1:11:30 just to be clear here: I'm not saying that bullying stops once a disfigured person reaches adulthood, or that it doesn't have any meaningful impact at any age. I'm not saying that anti-bullying/'just be kind' messaging is worthless. What I do strongly believe is that, as with everything, telling people to just be nice and not bully (and telling the bullied to be strong/protect themselves) is kind of just a temporary solution (when it works), and we have to look at what's underlying, what's generating the instinct to bully and ostracise, and why those systems that allow the bullying (/systemic ostracism, etc) are acceptable to most people.
"and we have to look at what's underlying, what's generating the instinct to bully and ostracise, and why those systems that allow the bullying (/systemic ostracism, etc) are acceptable to most people." You might not go far with that mindset though. While of course we can just blame capitalism for making it easier to ostracize or easier to bully or making it more acceptable to be cruel to others the actual underlying reasons is basic human psychology rooted in our biology. While it might be cool and dandy to pretend that people are just tabula rasas completely shaped by their environments facts remain that there are a lot of biases, features and traits of human mind which are universal across all cultures. The acne matter is best example as diseased skin is seen as unattractive in all cultures through the history. Just like group thinking and us versus them mentality are biologically hard coded facts of human psychology so is a dislike and distaste for individuals who are unusual and different. It is probably not an accident that it is faces which look like averages of all facial features in a society that are always seen as most attractive, for they do not deviate.
This is such an interesting video as someone who had a cleft palette without a cleft lip. I was invited to CLAPA's respite camps for kids with cleft lips/palettes but never went because my cleft palette never really affected my life beyond a slight lisp and choking on food semi-often and I didn't feel like I deserved to go. It's odd to reckon with my own internalized ableism around disfigurement when I had the same developmental issue as so many visually different people
i have to pause this video half way and take time to digest everything because it made me realize... im disfigured, too. i never truly pieced it together til now, but, its true. i also have endometriosis, i have burns and scars from cutting, i have Hidradenitis Suppurativa which is a skin condition, and i have holes in my skin from my dermatillomania (skin picking). ive always carried a lot of shame over my disfigurement. burn victims are generally pitied, yes, but, mine were self inflicted. i was never given that love and grace when i open up about it because its "my fault". people are disgusted by my burns just as they are by my cuts/scars. but, they are especially disgusted by my skin condition. i have spent nearly my whole life hiding them, its gotten so bad ive become agoraphobic. ive had romantic partners accuse me of cheating, or accuse me of lying about my virginity because of my skin condition, (SI warning) ive been told to off myself, ive been called an attention seeker for my scars, ive been called a child for being unable to control my skin picking i dont know how to deal with this newfound realization that i am disfigured... but, in a way, its good to know that i am not alone. thank you for making this video, ill go back to watching it now, lol
Your experience is valid ❤ I hope seeing yourself differently will help you cope with the unfair way people treat you❤. Your scars show that you went through hell and came out on top. They are showing your strength!
While mine isn't as visible, I have skin picking of the scalp and constantly get black sores that are visible due to my short hair, so I feel with you right there. I recently learned it is technically a type of OCD since we can't control ourselves from doing it. I have ADD and other mental stuff on top of physical disabilities and seem to especially use mine to bring my focus back or to ignore the pain for just a moment. I try to distract myself or wear hats and it's really hard to stop, so just know you are not alone.
I have Pierre Robin sequence and I find that my disfigurement has been rendered more visible both with my transition FTM and with society’s increased emphasis of jaw as a key component of attractiveness (ie mewing trend).
Hope some folks can help relieve the stress of the adsense nonsense. It's clear how much solidarity you find within these essays. Your community building is greatly important.
It’s interesting, thinking about how the definition of disfigurement is really negative, with the use of “spoiling”, and how it should be defined more as differences from the expected norm for skin and anatomical proportions/structure- like how some groups say “visual differences”- then hearing you bring up acne scarring and texture as a kind of disfigurement healed something in me bc it made the connection in my brain that I should regard my acne scarring and skin texture with the same neutrality/acceptance/sense of normalization that I think society should regard the visual differences that I had already thought of as being “disfigurements” Basically that while I was thinking society should challenge the idea that disfigurements “spoil” a person’s beauty, you talking about your acne unexpectedly also fitting under the label of disfigurement made my brain go “oh shit, I need to challenge how I think about my skin”
Literally this, I've had acne as long as I can remember. Finally found a skin routine that was actually clearing it up pretty well, then had to go on a long term medication that brought it back with a vengeance. It almost broke me, ngl. That was 3 years ago and I'm still working to reach neutrality about my acne. We should start a support group
I'm really looking forward to hearing your take on this trope, Rowan. "The Elephant Man" is one of my favourite films, and delivers a fantastic performance from John Hurt, despite him not being disfigured in real life.
48:52 I've had many surgeries and could have had at least one more when I was 16. But my mom said it wasn't a necessary one and was only to change my looks. I didn't do it and don't regret it.
same! i have pierre robin (and a handful of other things but PRS most relevant to this) and abstained from a second jaw distraction surgery at 16/17 for the same reason they were all focused on appearance
Every time I see someone who's never even read or watched The Man Who Laughs call it a horror movie, or reduce the character Gwynplaine to "the inspiration for the joker," I'm linking them to this essay. In the actual novel and 1920s adaptation, Gwynplaine's disfigurement and Dea's blindness often have them fall into the "pitiable" category. Gwynplaine at least has the arc of confronting parliament, drawing parallels between the treatment of him and the treatment of the working class. But ooohhh no people just see a photo of Conrad Veidt in makeup made to emulate facial paralysis and immediately assume "horror film," contributing to the "villainous" category even though the text itself doesn't!
I really appreciate the framing of this video. So much of the discourse of pretty privilege is about those who have it, or those who used to have it but now don't (e.g., aging, change in metabolism causing weight gain, etc.) and them reminiscing in the good ol' days... This, plus how body positivity movements typically don't include faces, has meant that the people most impacted by this form of discrimination are often left out of the conversation completely. It can be really lonely, so thank you ❤
When I was a kid me and my sister were discussing how much we liked that they took the time to include animating scars Hiccup from How to Train Your Dragon. Then we started to question why this wasn't more common. We tried to create a list of animated character with scars that were categorically good guys. The list was so small we broadened it to any visual differences, still it was barely more than a dozen. I still have the list, 15 names sitting in my notes app.
I'm 25 and having Strabismus is a big issue to me. I don't have to hear people say things anymore, I'm extremely insecure about it. I can't stare people in the eyes without feeling some sense of shame.
Hey, if it helps to know, my husband has the condition (it mainly affects one eye) and I gained it after a TBI so know that you are not alone my friend.
loved this video! I had never thought of my acne as a disfigurement before either. And I hadn’t considered the scope of connections between the experiences of disfigurement and being disabled and/or chronically ill much. I have multiple disabling “invisible” illnesses and it was great to have some fresh (to me) takes. Thank you Rowan and guests!
51:05 Girl, I feel that so hard. Lifetime fatty, and although it's not the same, like that other lady said there's a lot of overlap in that venn diagram of experiences, and that was definitely one of them. Girls LOVED to tease their friends by coming up to me and telling me they 'had a crush on me,' while giggling themselves silly. Such a stupid thing that still somehow fucks me up to this day, so even though I'm a grown man in my 30s, I have to actively fight my initial reaction to anyone showing interest in me, which is suspicion and anger.
This video makes me even sadder for the kids of anti-vaxxers than I already was. Some of the diseases we have vaccines for didn't just mess up someone's skin while they're sick, they left survivors with permanent scarring or other marks/bumps/discolorations. It's been long enough since those diseases were widespread, many everyday folks in today's developed countries have no idea what a recovered victim of one can look like. I suspect we'd have a lot fewer people against those shots if they understood what they're leaving their kids open to.
while i think it's safe to be concerned about antivaxxers and kids with completely avoidable diseases because of their parents' choices, expressing pity for people with disfigurements seems to miss the point of this vid pretty hard? (it would be nice if parents cared more about preventing medical harm for their children than the risk that their kids would look "weird" or "ugly")
Side note: I can’t get over how pretty the books behind her are. I can’t tell if the art is on the spine or painted on the page edges, but they’re gorgeous
i was diagnosed with Bell's Palsy in July 2017 at the age of 24 and it absolutely destroyed my sense of self. i'm one of the rare cases that it never fully cleared up. at the risk of sound self-absorbed i definitely had pretty privilege before my diagnosis. my smile used to be so beautiful and people used to stop me in public to tell me how pretty i was. i took it for granted. now that i live with the asymmetry especially being a POC living in canada i've noticed a stark difference in the way people treat me. only within the last year have i started to gain self confidence back by surrounding myself with a good support system and i'm grateful to have people in my life who value me for more than how i look. i grew up dreaming about being a performer whether it was acting or especially dancing. now that i don't have the face i used to, i'm unsure about my future in such endeavours 😞 how can i put myself out there if i'm scared to even make eye contact with people with how my face looks when i smile now
23:00 it isn’t just a monotheistic construct. I’m fairly sure it’s universal. Another case I know of is in “The Radiant Emperor duology” (In general a fascinating book on gender.) While it isn’t a Historic Novel, I’d say it’s history bending with a remarcably accurate portrail of hystoric events and culture. There are multiple cases of characters confronted with systematic and cultural ablism. The eunich, an ex slave for example isn’t allowed to enter temples because of his disfigurement. The main character, a ex monk has to re-prove his worth and capability to her suporters after having lost a hand in battle. Later on the two forge an aliance and camp out at a tea house to kill some time and first get refused service then get ridiculed because the monk has a missing hand. They share an interesting heart to heart on how they get treated and how they get treated diffrently because where their disfigurment is. The monk had a full life before disfigurement and accepts it as a part of him. The Eunich on the otherhand is primarily known as the EUNICH general. He gets treated as if he was something other than a man and constantly feels the need for proving his masculinity. Outside of the circles he grew up in how ever, outside of the army, his disfigurement is invisible.
I got really emotional watching this, I've struggled with acne forever and I've never thought of it as being disfigured either... very thought provoking deep dive. 😢
I'd never considered how disfigurement and gender identity might intersect before. Respect for a trans person's gender is often still predicated on their ability to conform to stereotypical gender presentation-how are you supposed to earn that when you're implicitly seen not as a man or a woman to begin with, but simply "ugly"? Is it harder to get doctors to take your gender dysphoria seriously if you're someone who's "supposed" to hate their body?
I’m a trans man with cleft lip and palate. My disfigurement is often used to infantilize me and as an excuse to not respect my gender identity because “of course you’d be desperate to be someone else” (direct quote from a family member). My transition is described by others as “mutilation” and makes people horrified by how I’d “alter my body”, but the surgeries that had my skull severed in half are treated as great, “life fixers” and were hyped up my entire life. One thing that was “good” about it tho is that, even before I was trans, I was already used to the looks, the people feeling so bad for my parents for having a child “like me”…
I was born with a bilateral cleft lip and a bilateral cleft palate and always felt weird reading fanfics since none of the female oc's in any of the stories I've read ever look like me. I have begun to write fics that have oc's with clefts(those who are HOH).
In my personal life I have been lucky to not have any bullying(possibly because I was homeschooled and my mom says I would be if I went to public school) And my family/family friends have always given me compliments.
@@SpawnOfYogSothoth2387 Well what fandoms are you in? So far I've only posted a chapter for the Teenage Mutant Ninja Turtles (2012) show in regards to a character with a cleft.
I have a progressive disease called generalized dystonia. It causes uncontrollable twisting and muscle spasms throughout my body. The twisting is constant but also varies in intensity. In some ways I'm lucky that I was born "pretty". At this point only doctors see the disorder and not even all of the ones that should do. Unfortunately it also bars me from treatment because being pretty means that my deformities aren't getting treated. Presently I don't think I'm disfigured, but in a technical sense I am deformed. The progressive nature of my disease makes me hyperaware of my appearance. At times I even feel disfigured (i know that's not true). I do see the differences that have already begun. There's always a looming sense that I could at some point become disfigured. I really want to come to terms with this and value my appearance less. It's a battle though. Being autistic, I got by on my looks for most of my life. It makes me fear that if I become disfigured I'll no longer be valued by others. On the flip side I have a massive scar on my chest from a surgery (I had sepsis and a bone infection at 15). I've never been self conscious about it. In fact it has been a source of pride.
One of my favorite quotes in regards to scars comes from my favorite band, AFI: My skin is singed but it heals my heart And with glowing pride I'll wear my scars Honored by your hatred
Most forms of autism shouldn't be regarded as disability, just as a variant of the norm. Disability is something that hurts people. Just like illness. Getting rid of disability would only benefit a person
The idea that your face doesn't represent you, that your mind's eye doesn't see your face, and that you don't want to take pictures will probably also resonate with trans people.
This is yet another amazing video. It seems that you slowed your speech a bit and I truly appreciate that. It’s easier for me to follow. I love following you down the path from media representation to real life atrocities. As someone who is aging toward being considered less and less attractive, this video hits home for me. I also have partners who deal with disfigurement (burn victim and M.D.). Thank you for shining a light on marginalized communities.
this is an interesting watch as someone who is "just ugly," not disfigured by this video's standards that seem to include severe acne but not just normal zits, and seeing people who are considered disfigured who are closer to beauty standards than i am. the experiences seem very similar on the appearance level (while the medical side may be very different, being asked out as a joke is very much an ugly experience). the part on fat liberation seems to reflect this too. i was pretty surprised to hear that the one speaker turned down cosmetic surgeries because any doctor who would feel like she needs cosmetic surgery would feel the same about me, and i'm just a normal ugly person, while i don't think most people would assess her as ugly (and she's reflecting people having attraction to her and asking her out that hasn't been true for me as an ugly woman older than her)?
As a disabled and disfigured person - we are often forgotten about even in the disabled community - So I'm glad to see you talking about this!! one thing you kinda touched on here, but I wanted to share my experience with - is how loosing your disfigurement can sometimes have some of the same psychological effects as when someone gains them. I have a condition that causes tumors to grow on my nerves - both inside and outside my body. This obviously is very difficult psychologically, but after having some of them removed - it felt super weird. Like almost not recognising my body and feeling like I lost part of myself. Objectively, it is very good to have them removed; but Its not the amazing/euphoric experience people expect. I also often forget i;ve had tumours removed as they are MY NORMAL. Ik you didn't use these terms exactly, but the ideas of the social model of disability and the medical model are super relevant and important when talking about the experiences of ppl with disfigurements.The 2 intersect a lot and its super hard/complicated to pick them apart, therefore the 'solution' is gonna be super complex. x
While not quite the same, I can kinda relate to surgeries being psychologically different afterwards. I have FND and hEDS and underlying birth defects. Most all my surgeries stopped some pain but failed and caused new issues. My recent hysterectomy really screwed with my body and it feels weird having that organ removed cause now things are prolapsing and I have a phantom pain in my side and that's just from that surgery. My wrists feel different after carpal tunnel surgery. My elbows.,.. I have to wear braces because I feel like i am going to snap. I now know I have proprioception issues but it's really hard getting people to understand the weird mind/body connection after surgeries.
was so thrilled to see this thumbnail pop up to begin with!! recently i’ve been wanting to get more deliberate about uplifting / building together with people with visible differences & disfigurements as part of my disability justice politics. perfect timing, i didn’t even have to go digging for a starting point because i was already subscribed to you. thank you so much ✌🏻💖
Anyone else here with keratosis pilaris? I’m surprised I haven’t seen media with characters with it and rarely so with vitiligo. Im very self-conscious with my bumps I had in my whole life because my mom used to tell me about guys could run their hands on my arms and get disgusted with the bumps if I was in a relationship (and she wouldn’t stop freakin touching them, even when I tell her to stop). That hit a nerve that never recovered, and I usually wear clothes that hide the bumps out of shame and fear of people worrying that I could be carrying some contagious disease and isolate me. With how many people are out there that have this skin condition, I’m surprised I STILL haven’t seen media with main characters with that condition today. Acne… yeah, everyone who struggled with them can easily explain it better than I could.
I have it on the backs of my upper arms and my upper thighs. Just always thought it was razor burn (even when I wasn't shaving =P) and then dermatologist said otherwise. Don't let it worry you in terms of relationships. Not everyone is that picky over stuff like that. I've got a lot of disabilities (mentally and physically) and when I met my husband 17 years ago, he didn't even notice my keratosis til I pointed it out and was like "oh." then just shrugged it off as nothing. So embrace your uniqueness. ^_^
My mom had a facial disfigurement-she called it her birthmark, but it was a swollen vein on one eyelid. (There’s probably an official name for the condition, but she was born in the 50s and I don’t think anyone was curious enough to investigate.) I never really noticed or saw it, but I know it had such a large impact on her life and sense of whether she belonged in society.
Getting ready to watch this one today with tissues on hand after bawling my eyes out after Commander Sterling's disability lens on Mouthwashing yesterday. I'm so glad that there's some big, topical conversations currently happening on disability in the video essay space.
Something that was briefly touched on that I thought was interesting was the connection between disfigurement and queer identities. As a trans woman, I related a lot to Rowan’s description of how she cared so much more about her own acne than the acne of anyone else. I quite firmly believe that people’s appearance shouldn’t stop you from gendering them correctly and all that, but it’s a lot easier to apply that idea to somebody else than it is to yourself. I feel as though I don’t deserve it if I don’t pass, or if I don’t at least try my best to. I feel scared asking anybody for the same courtesy I would offer others. I don’t have many friends, and I worry that they might not accept me if I did come out. Mostly, I feel scared of standing out. Living in the middle of a deep red state doesn’t exactly help matters either. Something I’ve been revisiting recently is my sexuality as well. For a while I thought I was bisexual, but recently I’ve started to think I’m probably gay, that is, a lesbian. But, that’s a scary word for a lot of reasons. Bisexuality is a nice, comfortable label to hide behind. It doesn’t imply anything about my own gender, it’s vastly more accepted than transgender identities which makes it a lot easier to talk about casually, and it gives me the freedom to explore any attractions I might have without questioning something about myself. Lesbian, of course, is harder to claim for all of the above reasons, but there’s more to it than that. So much of how trans women are portrayed is just as weird straight men that want to get closer to women, and I can’t help but internalize a lot of that messaging. I don’t always feel that I’m ‘trans enough,’ or that I deserve acceptance, and the last thing I want is to make anybody uncomfortable by being in the wrong place. I think the reason that I’ve been so resistant to accepting that I’m a lesbian is the fear that maybe I am gross, that I won’t pass, that I am just unpleasant to look at. I think I’ve often felt a little bit of a subconscious sense of pride, that I may be trans, but at least nobody can accuse me of autogynophelia if I’m a bisexual - despite the obvious fact that those people don’t care if it’s true or reasonable or plausible. I’m know I went off on a bit of my own tangent, but I hope you at least got something out of it if you read this far. I guess this is something I’ve been thinking about a lot, so it was helpful to write it down, and maybe it’ll resonate with somebody else. I’ve heard journaling can be helpful to sort through your thoughts, maybe I should try it some time… ~ Skyla 🩵🩷🤍🩷🩵
I live in Oregon now, but I had to spend a year in Arkansas and absolutely hated it for how they treated people. I have a lot of lovely trans friends and a wonderful trans cousin, so just figured I'd throw you out some love from here and I hope you are doing well and definitely hope you start journaling. It has really helped me with my disabilities/mental health journey.
Subtitles at 8:06 appear to be incorrect, I believe she said "[...] which comes from a craniosynostosis condition, a condition which falls under the craniosynostosis umbrella, called Crouzon syndrome". Loving the video so far, thank you so much for what you do Rowan!
there are so many things I could comment on, but maybe the easiest way to get across a lot of the feelings this video has brought up for me is that people's thoughts and behaviours regarding disfigurement and/or disability will not change until society's views radically change. I really connected with Mikaela's points about anti-bullying because "don't be mean" doesn't really address the multitude of negative beliefs (or toxically positive beliefs) people have about visual differences and disability that cause marginalisation.
As the years go by, we will slowly change in society. It especially helps that the older; less open-minded generations are going away and the younger ones are taking over and opening people's eyes to how much better the world could be if we stopped being so negative. It's like how much change we've seen in the world in terms of the LGBTQA+ community or even with women's rights.
I've noticed I tend to have a very different sense of beauty to other people. I think it mostly comes down to a mix between the practicallity of more physically visibly distict people being easier for me to recognise with my autism flavoured face blindness (acne and everything else included), and the fact both of my parents have unusual looking faces (of which both I like aesthetically). My dad has a lazy eye, and my mum has a large patch of different coloured skin. She was a few years back approached by one of the wommen in the dermatology department of the hospital she works at about removing the mark on her cheek, and she eventually got out of the woman that it wasn't cancerous or anything, the suggestion was purely for aesthetic reasons that her husband might like. Also I had a 6mm overbite and super wonky teeth before I had braces for 4 years. I was never particularly selfconsious about either, I got super lucky that I didn't get bullied about it, the only bad experience I had out of that was being stuck only being allowed to read books from school well below my actual ability because I physically couldn't pronounce certain letters even though my mum actively complained about it on my behalf.
Hey, as someone who is Asexual and has always looked kinda odd, I tended to love people who were unique/different than the norm because they always seemed more authentic and open-minded and were like me and so I gravitated towards people like that. I, too, have an overbite and had trouble pronouncing things but I cannot afford braces because it would cost close to $20k to rebuild my jaw and get braces and stuff and at 34 with hEDS destroying my teeth, it's not worth it. I recently discovered my mispronounced words were actually from genetic hearing loss and less-so my teeth believe it or not.
@NoOneReallySpecial I'm also ace :). I got lucky that my teeth were so bad they effortlessly fit the criteria for free braces via the NHS. I think my orthodontist put me down as at least grade 4, possibly 5 on their 1-5 tooth weirdness scale. My sister's braces weren't free though.
The video going out and making me realize I am disfigure bc of my autoimmune disorder. Even tho i was explicitly told it could change my appearance and that when it was on my neck we just tried to not aggravate it but once it moved to my face. I notice it every day on my face even tho its responding to treatment I asked multiple times if it would ever go back to being normal. Sometimes when I dont wear make up or like we started being lenient about masks (which used to cover it up mostly) my friend said you've got something on your face. We were in lunch I knew she meant the mark and I played dumb and watched as she tried to whipe it away idk why I did instead of not telling her right away...
Not me being born on june, being queer, and scleroderma awareness month being june (i have morphea scleroderma which is just localized scleroderma and not systemic aka I only have it on subcutaneous tissue aka the tissue that covers your meat vessel)
And the funny thing is I was diagnosed fast enough and started treatment early on and i had the discoloration but not the tightening of the skin yet. I being a stupid teen did neglect puting the immunisupressant cream on to the back of my neck whre I had another lesion. So thats the only part that has the collapsed tissue look. The rest remained as discoloration after almost 4 years of useing the cream i am now in a stage where I stopped it and it hasn't gotten worse but im also anxious almost every day amd keep a spare tube of the cream in my room. And the thing is there is "treatments" but no cure and I am stuck with it and even my professor who thought about immunity in med school didnt know my condition as an autoimmune disorder (turns out its quite rare thus lack of research thus lack of treatment options)
The article also talks about getting misdiagnosed with vitiligo which happened to me too bc I also have vitiligo. My current dermatologist actually did a biopsy bc she was not sure it was vitiligo (around when the redness kicks in befor the brown coloration) and she took two samples one from my clearly vitiligo skin and the other the lesion I neglect the back of my neck. And wha woom there you go I have both
Stellar video, Rowan! It was great to hear from Mikaela and Bronwen, too. Disability and masculinity in Victorian Britain is fascinating. You can see the roots of internalized misogyny and ableism we see among men in the West. I'd imagine that phrenology and psychology during that time has also played a significant role in perceptions of beauty and the supposed criminality of disfigurement. The idea that disfigurement predisposed someone to "insanity" or criminal acts was so rampant that "beautiful" people were less likely to be suspects of things like murder. Look up sketches of possible suspects for the Jack the Ripper murders and you'll see what I mean!
20 minutes in, I've had surgery on my sinus at 30 that was malformed which pretty significantly changed my eyes and shape of my face and cystic acne. I can certainly relate to the internalized Abilism and sense of self and claiming of certain words and indentity. So sorry to hear about your adsense that's really stressful. Wishing all the best with getting through this and appreciating another deeply thoughtful essay so far.
Thank you for giving me that same sense of "... Am I disfigured?" Having also struggled with acne and other visible but changeable things, I've never acknowledged them as disfigurements, firstly because I considered "true" disfigurements to be permanent things, and second because I didn't want to give my own blemishes that level of acknowledgement, that level of... power and control over me, as being something permanent that I could not change. Setting that mindset aside, I shall now continue listening to your video.
I was caught off guard when, listening to the video, i was thinking the reactions deacribed matched my experience with being fat and having eczema, and you, Rowan, brought uo the comparison yourself. The "being a joke challenge" as a romantic consideration for men, who wefe my bros unless somebody remembered my crotch. The accepting internally that I wouldnt be lived by someone who loved me as I was, but in the best case scenario love me Despite who I was; and more likely, making peace with not being loved at all; because every message regarding people who looked like me was tbat they were disgusting, unattractive, ugly, evil, give the ick; but then, when I said that I was expecting to be regarded that way, my loved ones would say that Im beautiful. Am i really beautiful? If i wasnt your family/childhood friend/etc., but instead a stramger out in the world, you'd be laughing like those other strangers did, you'd be daring boys to talk to me, you'd be saying how outrageous it is I dare to wear clothes that are not a full body moomoo. This is probably wrong to say, but out of all of the examples I only thought the cleft palatte was a disfigurement; and I was appalex at the definitions of the word disfigurement, because they all sounded so vicious, like disfigurement ia something done onto somebody else as an act of violence, to remove their moral right to beauty; when honestly disfugurement is just being born/being changed by life events into something outside of the belly of the bell curve. Something evil can cause disfigurement, like if you unfortunately were attacked by an enemy, but also you could have like, survived a weather related accident (?). Disfigurement is not a punishment, and furthermore not a moral punishment for being evil like a cartoon. Speaking of cartoons, the hunchback of notre dam hurts to watch for me, because the girl never sees the main character as a love interest; to me, it was a reminder that when you body is not in thw belly of the bell curve, you are assigned asexual/aromantic (repulsed to sex/romance level) without your input; you are a great friend, but you arent the target of passion, or yearning, or possibility, or illusion. You are you, detached from everything and everybody else; and by yourself, you are not part of the pool of love interests. At least thats how you feel. Plot twist you learn years later that dudes were into you (dudes who arw probably a little fruity), but nobody had the courage to date you. Why didnt they say anything? Because you were outside of the belly of the bell curve. Im tired. I do appreciate this video for expanding my understanding of disfigurement and making me aware that this is another fight to stretch solidarity to. Thank you for making this video Rowan. And thank you for not putting Wicked in the thumbnail, I would have skipped it just to avoid the trend right now 😂 😂
I really get what you mean about the "are you disfigured?" question. instinctively "no", but... ...I'm 6'4". for a cis woman of my nationality, that's "the height conversation is a lot of people's go-to introductory small talk with me" sized.and that make a lot of this relatable. I don't think extreme height counts for me, but I really think it could for others. I am aware, for example, that very tall straight women often find it's an obstacle to dating (in the same nebulous "is it that people won't date them or is it that they assume [difference/disfigurement] makes them unattractive?" way people described in the video). when my parents met and dad asked mum to dance, my mum was genuinely surprised dad still wanted to after she stood up.
I wasn't expecting to relate to this video as much as I do, but I got about halfway through it when I realize this is the experience I've had growing up with a very stand-out birthmark above my eyebrow. I was bullied and alienated for it, and that experience also fostered the same sense of "I'll never be desirable" as it did you guys. Thank you for this video, Rowan 🌻
hearing about the relationship between transness and disfigurement struck such a huge chord with me ngl it like when you hear something you already know and yet it feels like new information because youre actually thinking about it
Thank you so much for a thorough and thought provoking exploration of disfigurement. I just wanted to note my understanding of Auggie's award in Wonder had to do with him bringing people together, not just being courageous/ brave and getting through. I feel like you've captured the lived/ living experience really well, particularly the mental health impacts- a lot of it resonated with me as a disabled person, with a few lightbulb moments of things that I hadn't connected with my own disabled experience. Thank you 💙
tysm for making this!!!! i’ve had a facial disfigurement all my life due to meningitis and it’s made everything so hard ppl make judgments based on something i can’t even control im 23 and have no friends basically and im starting to realise it might have something to do with my face and disability 😑
the non-auto-generated subtitles seem to have a lot of errors. enjoying the video but thought i should make sure someone points out a pretty significant issue
The thing about the Idea of God being a being of perfect desgin at 23:00 reminds me of the Japanese song called "Gira Gira" (ギラギラ) by Ado, which is a about a girl thinking she's ugly and disfigured, but in the end she finds out God made her in their Image.
Isotretonoin or accutaine was such a game changer for me, and no matter how shyte my life is rn, and it is very much so, at least I don't have painful protruding pustules pestering me.
I think a good story about a character who can be considered disfigured is the cursed princess club web comic that was turned into an actual graphic novel. The main character is also a teenage girl, and I think that is really important considering the pressure on teen girls to look beautiful.
I was born able-bodied, but became physically disfigured in my early-20s due to a traumatic injury. I’ve struggled with how to feel about my disfigurement because while I, and people who knew me beforehand can see a difference, I appear relatively “normal” looking to people who did not know me prior to my disfigurement. Thank you for covering this topic with so much nuance, I have a lot to think about thanks to your influence.
Passing privilege is such a double-edged sword. Things like having invisible illnesses, orientations or identities, being a migrant or mix-raced... We live between worlds, in that liminal space that has some of the advantages and disadvantages of both, but it also has its own particular struggles. We don't suffer most of the blunt, active direct discrimination others in our minorities do. But we do get denied our realities, have to justify them and tend to feel lost and that we don't belong. The percieved belonging to the opresor group makes us witness a lot of that discrimination with the raw hatred society makes them limit to their ´peers´. And we deny our own needs because they are not as intense or visible or known or explainable or whatever. I have a big scar, but it's on my belly. I am a late diagnosed autistic woman with just level 1. I am aroace, but never had to turn anyone down. I have chronic illnesses, but they rarely affect me in my day to day life. I've been deppressed and with anxiety for years, but could always function well enough (with sick leaves from work).
This is my first time seeing a video of yours, and what an incredible and insightful video to be my introduction to your channel. This video game me quite a bit to think on and consider, thank you for creating this.
I just felt a sudden need to remind you that you're loved and needed. You're always beautiful, I'm sure that even without anything covering the problems you mention, you'd still be one of the most beautiful people in the world. You're alwaus beautiful, inside and outside. You're always loved and needed. Thank you for being here. I'm really happy you exist.
Came back here after seeing “he has a birthmark like me” and happy cried a lot. Representation is more important than we realize. Some people are still invisible.
This is the first time I have found out that being slightly larger on one side is a think that a surprisingly a lot more people have and that being covered in a bunch of small acne scars classifies me as disfigured.
OMG! MIKAELA!!!! Only just starting to watch but it made me so happy to hear from her, since I left Twitter a while back I hadn't known where to follow her
I grew up with an underbite that got significantly more severe as I entered my teens, and I absolutely felt subhuman because of it. It was corrected with surgery when I was 18 and yet I’m still constantly so paranoid about it- that I should have gone for a more extensive surgery to alter the top of my face, that I got TOO much surgery and my face isn’t my own, and that everyone around me is still repulsed by me and is simply lying. Seeing a side profile of me by accident through a photo or a strongly cast shadow can send me into a paranoid spiral where I can’t leave my house for days because of the internalized bullshit. I still have difficulty pursuing romantic relationships because of this. And this is YEARS after no longer having the underbite. Despite all this, despite the only realistic-looking portrait of someone who looked like me in my teens being the fucking Hapsburgs which are almost exclusively used as a cautionary tale about how incest makes people into ugly mutants (not my words), I’ve never considered myself part of this community before or someone who needed positive representation. So I want to thank you for that.
I interviewed a dietitian for my thesis about fat stigma. She said something about this idea of external/visible disability and unseen disability and how people see themselves differently. Basically, she said that women either face fat stigma or they fear it so much that it causes them immense stress. For her patients, fat clients don’t experience a greater impact of the stigma than thin patients, which makes sense considering how it is imposing this threat of violence and shame and hate that fat people are already used to and know it’s limits, whereas thin people can only imagine losing love and safety that they already have, believing they would lose everything if they got fat. Fat people have the knowledge that their loved ones aren’t going to leave them-they are already fat. There’s safety in fatness (not to mention the avoidance of bad dates or SOs who leave their wives when they gain weight I pregnancy, something fat women know wouldn’t happen with their SOs). To be clear, I am fat and have been my whole life other than one year. I don’t know how I feel about this idea, because like the acne discussion, I might chose being thin over having my autoimmune disease. If even take a love that was based partially in my thinness than the lack of love and the fetishization I’ve experienced as a fat.
Oh interesting! I would add though that it's not just about thinness, it's about doing thin 'correctly'. If you happen to be too naturally boney, for example, watch out. People will go out of their way to let you know just how scary/sickly you look (personal experience). It's much more about being legible as healthy than actually healthy. And, with diet culture, people don't know what healthy actually is and they have a lot of anxiety about it. So they body shame others to try to self-regulate, because obv it's not body shaming if it's 'out of concern'... And if your body is read by them as non-normative, you're expected to joyfully be their impromptu therapist and punching bag. I'm so over people not doing their own emotional labour; it's exhausting. :|
Honestly, it's not really so black and white. I have been on all spectrums; from really skinny to obese to normal weight. I was anorexic and skinny and 95 pounds/size 0 at my lowest in high school. Lots of factors like self-esteem, disabilities, love, poverty... made me skinny and I got bullied for it because it was unfair to others around me. Then when my disabilities got bad and I started having nonstop surgeries and I gained a lot of weight (thyroid started failing) I got bullied and made fun of for my fatness. Now I am an average plateau anywhere from 140 pounds to 175 pounds depending on factors like how my pain and mental disabilities are doing, etc. and I still get made fun of. People will point out the negativities in past and present pictures. All I care about is that I am as healthy as I can be. I hate that some clothes I love don't fit anymore but that's mostly cause of my breasts and I am learning to sew to change that. But yeah... I think the judgement on weight varies on all sorts of factors. For me, since I was disabled, I don't get as much hate as my sister or mom or friends who are overweight have but I have experienced it.
@@NoOneReallySpecial Oh yeah I definitely wasn't trying to make it black and white. My point was moreso that it is nuanced and usually not just about one issue. There's an aspect of legibility, esp as related to health. And some people just like to comment on other people's bodies and will do whatever mental gymnastics they need to be able to moralize that. Any way, I'm sorry you had to deal with those comments on top of everything else you were going through; that's not okay.
Watching this video and realizing my scoliosis also makes me disfigured, albeit not in the face where the video focus is. The word disfigurement has always just felt so extreme and somewhat fictional to me, like TwoFace from Batman. This was definitely really enlightening for me!
As some of you might have seen on my socials already - my adsense was shut off without warning due to an unknown error around three weeks ago. Adsense is how creators get paid, and without it you don't get a penny from views or ads run on your videos, so I've now had three weeks with no income from TH-cam.
So, if you've ever considered supporting me on Patreon or tipping on Ko-fi now is the literal perfect time 😅
💙 patreon.com/rowanellis
💙 ko-fi.com/rowanellis
Some recent comments on my Patreon by supporters by way of evidence that it's a great time over there and the perks are rad:
BTS videos: "I am loving the behind the video insights - I went the business route after graduation and you don’t get into many deep conversations that way. I did not realize how much I missed it until I started watching you. Plus now I get the added bonus of it being queer! Just perfect."
Rec Lists: "Your rec lists are always phenomenal. I'm taking notes."
Care Packages: "I can only imagine the degree of effort and commitment it must take for you to personally reach out so often to so many people, but please know that each touch is meaningful to me. While I also support other creators on Patreon I honestly believe that you are the only one who actually knows my name. While that may not equate to anything of note in real life, I can assure you that it absolutely does within the Patreon bubble."
For most bigotries, all you have to do is be compassionate and sympathetic to not have them ableism is an exception to that rule
Oh, that’s so strange, that just happened to another person I watch really recently
So this same adsense thing happened to Jill Bearup yesterday.
Lmao you want people to PAY YOU?
For what exactly?
@whiteydiamond
You could always ask nicely, even if you’re confused :-)
I was taking classes for hair and skin care for a bit. The teacher asked for a volunteer to get under the magnifying glass and i volunteered cause I thought my big pores would be a good variation as an example. She and all the class were horrified and demanded I swap out with someone else. My pores aren't even that bad. I was so baffled cause like, what if I had been a customer?? That's how you'd behave????
They need to grow the fuck up!
plus literally EVERYONE has pores omg??? most people would look similar under a magnifying glass. this idea that normal human skin makes you ugly or disgusting is so frustrating.
I would like some help with that. I want better skin.
BRUHHH I used to be in cosmetology school and the stupid teacher had a similar thing, not just a magnifying glass but it also like had a UV light or something idk but it was meant to "reveal all your flaws" LOL and people were like going under it and everyone was like wowww look how bad / look how good her skin looks asodjawshjfuhfukahfhawiufghi
@@Thawah 😭
Two random thoughts:
-"Rudolph the Red-Nosed Reindeer," funnily enough, seems like an example of the idea that visible difference is only acceptable if it's "useful" in some way.
-Shrek can definitely be read as a story about the experiences of a person with a congenital "disfigurement" (being a "big ugly ogre" in this case) falling in love with a person with a person who wasn't born disfigured but became so later in life and unpacking what it means to be visibly different in this world. I'm honestly glad it was a formative film of my childhood.
Shrek is so good
I'm so glad I grew up with Shrek. It's the first movie I can remember seeing in the theater.
I thought of Shrek too when Rowan talked about the Beauty and the Beast examples, because not only does Shrek reiterate the message that "naw, your true self is valuable and good actually", it (Shrek 2, rather) even includes a segment where Shrek and Fiona ARE changed to look conventionally attractive and then their happy end is reverting to their true selves. Which like... shouldn't be so rare and refreshing I suppose, but it's wonderful nonetheless.
I do disability advocacy in my college, and one of my friends who I work on this made a fanzine explaining ableism through Shrek. It's the one that people take the most, I think in part because we've all related to Shrek in one way or another so it's a good way to introduce ideas about disability or disfigurement to those who are not familiar with it
@@bloomnights It is a little bit soiled by how much the first movie just loves to mock lord Farquad short statue.
the first time i watched the wizard of oz when i was a kid, i remember that when glinda said "only bad witches are ugly" or something to that effect, my mom said to me: this is what's wrong with the entire culture of the US. they are convinced that statements like these are true.
One of the things I love about Wicked is that it adds a layer of understanding that Glinda is a product of that sort of culture, but also doesn't fully believe it and it just participating in the propaganda for her own benefit and to do what she can for Elphaba.
Respect to your mom 🫰
As disabled kids, we grow up not seeing ourselves as anything but villains. Captain Hook. Scar. Darth Vader. Every Bond villain. Somehow, physical disabilities became shorthand for evilness, in the same way as Russian accents. And if you see a good guy with a disability, you can bet it’s a limb difference that then has a perfect prosthetic that makes it impossible to tell the difference. Yes, I’m looking at Luke skywalker and Bucky Barnes.
When all disabled ‘rep’ was done by abled people for so many years, you end up with stereotypes, disabled people are always childlike and innocent or evil and heartless, and both of those necessitate not having any emotional depth. And then abled people don’t ever interrogate the fact that they view any disabled character as ‘asexual coded’, not because they’re actually ace coded, but because they’ve been taught that any time they see a disabled person in media, they do not have any relationships.
To add, Ashley from the Evil Dead series is pretty much the only good guy missing a limb that doesn't get a perfect prosthetic that I can even think of. Not great that I can only really think of one, maybe.
Not the point. But Scar is really hot. The cartoon Scar, not the Disney CGI one.
That's actually sad, one person I know, who truly is a good person, used to tell me about her high school friend group that she used to have. There were three boys and three girls and they were all not very popular (although not bullied either). One of the girls had achondroplasia. I asked jokingly if they ended up forming three couples inside of that group, and that person was like 'Well...no. That girl was a dwarf'. As if it made her unlovable...I hope she did find someone who'd love her in that way. We all deserve that.
There’s a trope name for this: “Good Prosthetics, Evil Prosthetics”
@@GabyGeorge1996 Thank you fellow troper🙏🏻🙏🏻
I think one of the best disability representations in a family film is Massimo from Pixar’s Luca. There’s no tragic backstory for his missing arm; he was just born like that. The filmmakers even took into account how this disability would affect Alberto; he spends so much time around Massimo that he unconsciously eats one-handed. There’s something so delightfully matter-of-fact about it all.
Somehow I never noticed that he was missing an arm! I guess they made it subtle.
@@larissabrglum3856 They acknowledge it verbally in the movie and even make a little fun joke about it, you might've just forgotten
@@larissabrglum3856 you can see it by looking at a picture of him dude 😭
In small town Nebraska I was relentlessly bullied because of my face, adults did nothing to stop it and often encouraged it. These same people would go on for hours about how much they “loved Christ”
"There's no hate quite like Christian love."
Also grew up in small town Nebraska... having Neurofibromatosis also made me a bit of a outcast - people/kids thinking my skin bumps potentially contagious
Thats so real. Born with a cleft or a facial deformity, its hard because you know you look the way you do, and you know exactly why people stare, exactly why they dont sit next to you.
I was also bullied in Nebraska. I was genuinely surprised that when I moved somewhere else, nobody treated me nearly as badly as those kids did. It was crazy
@@DingoTheDemon kids can be shockingly cruel in my experience. I'm sorry you dealt with it too
I think we’re more socially accepting of “cool” didfigurements like scars or even (to a lesser extent) loss of limbs because we haven’t been made to immediately associate them with things like shorter life expectancy.
To add to this, people often associate these kinds of disfigurements a SURVIVING something. People are far more empathetic towards people that *became* disabled/disfigured later in life, instead of born as.
yes!! they can't think of disabled people as inspiration porn if we didn't "overcome" something
I have a scar going from my hairline, through my eyebrow and down to my cheek (sleepwalking lmao) and have 100% noticed this. As a man with a very stereotypical scar, I've gotten nothing but compliments. A few children get a little apprehensive but it's to be expected. I've gotten way more negative feedback from the vitiligo on my body and the spots aren't visible unless I'm about to swim
I think Vitigilo (and similarly, Piebaldism) looks really cool. Albinism does too, but I've heard it comes with more health issues, so I feel bad for people with it.
@galaxychill9578 I'd agree (heavily biased 💀) but I cannot keep track of the amount of weird comments. I'm glad more people like you are seeing the beauty in this though
I was born with facial palsy. I never knew a life where I haven't felt different, not only physically, but because once you have such a distinctive feature it's hard to accept anything else you might be. Being queer and neurodivergent is coloured by also having FP.
I always loved acting and I'm a musician but it's something I can't seem to pursue because of how performative arts are connected with body image.
The other day I realized I don't even get to age normally, since only half my face is developing wrinkles.
So when we see disfigured characters that are always anything but normal, it takes a toll on our self image. We're not villains, but we aren't heroes either. We're not brave or saints for existing, and we are not bad people if we have unhealthy coping mechanisms.
It's a fine like between wanting to feel normal but also being ok with the fact that we will never be.
Pretty much this. I love joking about myself and getting called a T-Rex and having really horrible self-deprecating humor (like the millions of patches and lyrics all over my battle vests for concerts. I have had people taking pics of my vests and laughing at some of the horrid jokes at my own expense) and I enjoy it cause if I can't enjoy my own pain then who can? But at the same time, it would be cool to get to keep being a chef and having hands that aren't the living equivalent of the movie "Idle Hands". But then I think of sacrificing my unique "lizness" (as my old surgeon called it) and then it's a neverending loop.
54:28 Oddly enough, I think Shrek is one of the few examples where that's not the case, because Fiona gets transformed into her 'ugly' ogre self permanently instead of her 'beautiful' human self. I guess it's a bit different because Shrek is an ogre as well, but they did fall for each other's personality more than for their looks ☺️
Shrek is kinda like my current relationship, in that my husband and I fell in love for personality and then over time I got more and more disabled than I already was and he still loves my personality and doesn't even see any of the physical changes cause "I am still me" in his eyes even if I've had organs removed or my arms don't move as well or my teeth are damaged, etc.
My personal problem with invisible illnesses and disabilities, is that no one believes you that you are sick. Or they pity you momentarily and forget about it, because they’re not visually reminded and then think you’re whining or over exaggerating.
There are also a lot of misconceptions about like ADHD, because it’s not just needing to run around the block a few times.
It’s harder to idolise and fetishise and humiliate something you cant’t see.
I was told that I need to read the Percy Jackson series as it expertly handles ADHD in the main character of Percy. Rick Riordan's son has both ADHD and dyslexia, and Riordan wanted to create a character that was brave, intelligent, empathetic, funny, and loyal but also just happened to have ADHD and dyslexia.
@@edamamame4U You absolutely do, whoever gave you that recommendation is entirely right. I am autistic and adhd and they handle both really well. Percy sometimes has mean (but realistic) thoughts about the autistic character, and over and over again he is proven wrong in his assumptions, and acknowledges that. Both characters are in fact funny and kind and smart kids, even (and especially!) when their smarts are different. It's a very wholesome and delightful read.
I don't know... Tiktok would beg to differ. Everyone and their mom thinks they have ADHD or hEDS or some other invisible condition and makes up lies and "how great life is" with these conditions; both of which I have professionally been diagnosed with and both of which have done nothing but wreck my life, but yep... I love em. *eyeroll*
@@NoOneReallySpecial TikTok is a vacuum. I know it seems like there are lot of people, but at a very early point it’s just the Algorithm sending you the same stuff.
And I’m also very sure that a lot of those use it as a marketing ploy to get more people to follow them.
I think self diagnosing is valid, I did so too before getting the diagnosis from my psychiatrist and never would have gone without it. But you need to differentiate between those who are honest about the symptoms and want to learn more, to help themselves and understand themselves better and then the rest who hops on themes that are ‘in trend’ to get attention.
There is also a whole lot of people who think autistic people are gods from another planet, if you believe TikTok.
But if you go out and talk about it at your work/school etc, there is still a lot of misunderstanding and stigma or just plain ignorance. A former work colleague told me her son was diagnosed, but he just needed to run outside a little more and all was fine. I honestly, sincerely doubt that.
And if you talk to younger people there can be just as many misconceptions, because they rely on TikTok as a source.
But you wont get better treatment, because they’ll thinks it’s still easy to handle and that you’re overreacting.
I'm prone to getting lots of acne and have acne scars on the side of my face. I'm so tired of hearing my parents cringe at the blemishes on my face like they're detrimental to my appearance, and I'm also so tired of hearing that acne is something I 'shouldn't have anymore' as if it starts and stops at teenage years.
acne is based and i love mine.
Same, I think it's a hormonal problem for me (I have some other issues besides the acne) but I get so much shit about it from some of my family members when I get a particularly bad flare up. They literally treat me like I have some horrific disease and constantly make rude comments about the acne
I'm 34 and still get it since I had hormonal issues (endometriosis was one of the big factors) and I found that having good meds and then those pimple patches honestly really does a number for me mentally. I found the most cutest ones that are little ghosts that glow in the dark! I wear those on important days and stuff when a huge pimple pops up and then usually if people comment on it, they just say "omg that's so fun! I wish I could have that much fun whenever I deal with my acne" and then I tell them where to get the patches and everyone seems much happier.
@TwisterTornado Alpha arbutin got rid of all the pigment-based scarring I had, though obviously it didn’t fix the pitting etc.
I’m so happy that you decided to cover this topic because I need people to stop demonising people who themselves are the targets of systemic issues.
An example of non-moral facial disfigurement in fiction, is Mortal Engines: the love interest/deuteragonist of the series has a large scar across her face, described as "hideous" and in detail. Her entire life is affected by it, including her ability for facial expressions.
The adaptation (bad in so many ways) decided to tweak this into a barely noticeable, small scar on the cheek on an otherwise conventionally attractive, clean face.
They did the same thing to the love interest in Ready Player One
@@octochan And the love interest in "It's Kind of a Funny Story" which really made me mad cause I was actually looking forward to it being a good movie cause I loved the book and my sister was going through a mental breakdown when she read it and really loved it, too.
Yes, I even remember it went from her eye to her mouth. And I HATED the movie! It was absolutely pathetic. They really flopped on Hester's scar like a bunch of cowards.
I would like to politely disagree with 54:38, and say that honestly I don't think that the disfigured person is even centred in their transformation. I feel, if anything (in romcoms for sure), that it's portrayed as a reward for the other party, that, having overcome their qualms about disfigurement, they are rewarded with a conventionally attractive relationship. It almost suggests that you can 'fix' disfigured people by simply ~loving~ them, which is so contradictory.
But I mean to say that it comes across as a moral reward either way. Either the conventional love interest is rewarded for their lack of shallowness by... having an attractive partner. Or the disfigurement is healed as a reward for doing something nice/ becoming a better person, implying that the disfigurement was the result of poor morals in the first place.
Odd and cruel either way.
+1, I support your comment
Pretty much this. Now... if we could get a Shallow Hal-esque portrayal where they at first see them as pretty then see them as they really are but then still view them "as their internal beauty" that would be an interesting take on this trope which I sadly would actually like to see, since I've had some very shallow/self-centered "pretty" people/co-workers who got to know me tell me "your internal beauty just shines and overwrites your external flaws and now that I know you that's all I really see".
crazy how much this resonated with me as a trans man with no real visible disfigurements other than the fact that.. well.. im very visibly trans and autistic. what Mikaela said about bullying is soo true... in adulthood its not the bullying that affects my social life, its the LACK of invites, the lack of people reaching out since i came out, the difference in the way they speak to me..... etc etc etc.. loved this video
I also have similar acne problems and severe Endo... and I am sitting here paused at 27:03 asking myself "HOLY FUCKING SHIT?!? Which would I choose... Endo or Acne???" Can't bring myself to hit play and here your answer til I can answer this myself... This is a seriously hard question that has me crying as it's really not something I'd ever considered.
My gut reaction was I'd keep the Endo, get rid of the acne... Endo being internal makes it feel like its an integral part of me that can't change... whereas the acne feels like it's not "part of me" and more like something that just happens to me and something I should be able to fix... so please, take that away.
But then my logic kicks in and I remember how much I've lost due to endo... far mor then I ever lost due to pimples... I know the logical choice is get rid of Endo, keep the acne...
But no... I couldn't do the logical thing here... If I was somehow magically given that choice... I think I'd keep the endo.
Time to hit play then I guess.
I legit feel oddly comforted to know you chose the same thing after I hit play... Thank you for this video... hard looks at oneself are never easy. And considering the emotional roller coaster I'm feeling right now, I'm sure it must have been much harder to make a video and be public about it. Thank you for being brave for those of us who can't.
It's a looping and neverending cycle. Like, I would probably choose the lesser of the two evils, but then when I think back on my PTSD and the bullying I gained from outward issues versus internal then it's like "hmm...." but then I go back to how much my life changed cause of internal stuff and then I feel like I have an answer but then...
I think that the warrior cats fandom is wonderful since two disfigured characters, Briarlight and Brightheart (brightheart with a massive scar across half her face and a missing eye, and briarlight with paralysis in her back legs) are actually some of the most well loved in the series and are showed as happy and uplifting characters. I have mixed emotions about them as some have argued they’re only there for an “inspiring” plot point, but I think it’s a beautiful thing how the community loves these characters so much compared to a lot of other communities
They're not the only ones. Jayfeather's blind. Characters age & as they get old, some become disabled & still are important parts of their community. Brightheart is also a really great character because she adapts to her disability, is still desirable, has a mate, offspring & an important role in her clan.
please dont make the disfigurement video about a fandom
@@bigendaliver and for a book series that is famous for killing off disabled characters in horrific ways and has a really consistent "disabled people are second class citizens" rhetoric too -someone who has read the books LMFAO
@ i was pointing out the fandom’s view on the characters which is relevant to the video
@@bigendaliverdiscussing representation and its reception isn’t relevant? This isn’t “about the fandom” for no reason.
I remember being a child and treating a family member who was a burn survivor like they were a monster because of how the media had taught me to view people with disfigurement. I'm sure that I destroyed her self-worth for a very long time but I matured, apologised and worked to repair what I'd done. not my brightest moment.
im glad you were able to make things right.
It really hit me as someone who also didn't really consider themselves as disfigured for a long time. I had a strawberry birthmark on my lip as a baby, it was quite large, but mostly a cosmetic blemish. The swelling would've probably gone away on its own eventually, but it was less certain whether the pigmentation would. My parents decided it would be best for me to undergo a laser treatment for fear of how I'd be treated by other children - *I* don't remember being treated badly by other kids, but my mother tells me that their parents would ask what was wrong with me (in so many words). It's something that's affected how I feel about a lot of things - plastic surgery, body image, etc. I can't imagine my face without it, and despite technically having the opportunity to get further laser treatment to reduce the scarring, I don't feel a strong desire to because beyond an Observer's judgement, it feels needless and said judgement is not a large influence on me, in part because I think said disfigurement has given me some positive body image feelings, or at least some resilience. It's strange, too, because despite being a more obvious disfigurement (my lip is partly bleached, there's scarring where my lip/nose bridge together that is self-evident!), guess what I *was* bullied for? acne! of all the things.
Agree with Michaela that anti-bullying programs are mostly stuff we should be implementing in educational programs in different ways.
Think that normalization is the way to go, but this could be difficult for the individuals who would be the most visible for so many reasons.
Thanks for the video Rowan, lots of things to think about
I’m fat and always have been. The discussion about the overlap between disfigurement advocacy and fat liberation was amazing to hear, but the part that really hit home for me was when Bronwen talked about being offered cosmetic surgery. I’ve been told I need to lose weight all my life, all by well meaning people who just want the best for me. I also have endometriosis, and am undergoing a massive shift in my treatment plan that my OBGYN excitedly told me might also cause me to lose weight, since I gained a bunch over the decade plus I was on the pill. It’s been absolutely terrifying to consider, because it feels like it’s going to prove everyone who told me to lose weight RIGHT. Like, am I not worthy as I am now? Am I not a human being already? The answer could very well turn out to be “no” in the eyes of everyone around me, and I am absolutely terrified of that.
but losing weight is not simply cosmetic, obesity is a disease that should be treated like any other, it’s extremely dangerous
I relate to this so hard right now. I’ve been put on a weight loss medication because of a different health issue it also treats. I feel like a hypocrite-my thesis is about fat stigma! I lost a ton of weight years ago and looking back, I was treated so much better. People told me I looked so good, repeatedly, making it very clear I am not healthy or good looking now or when I was fat before. They opened doors for me, flirted, smiled even. It’s demoralizing knowing my body is my worth to others. And if I lose weight, what does that say about my beliefs about fat liberation?
@Cocoanutty0 Yes, this exactly! I've seen people not only be treated better after losing weight, but start treating me worse for not having done the same. I really, really, really hope, if I do lose weight, I don't do the same to others. It's awful. But, by the same token, we can make sure we uphold our beliefs, even if our bodies change. We're in charge of how we behave and how we treat those around us, and we don't have to lose that just because we're not exactly the same as we were before. That's the most hopeful thought I have about it, to be honest.
See, one of the things I always think is that if I got surgery to look better for the world/prove the world wrong, the world would still find something to hate about me and on top of that, I would probably not be as happy as I was before (in my case, it's fixing my teeth. between my jaw deformity, gum disease, cavities, and TMJ it would cost over $20k just to get braces to make me pretty for the world... that's the same cost as my college education all for what? the approval of invisible people?) and that's not even factoring in money and the fact that fixes could fail; since all my other surgeries have.
So what you really want to do is have surgeries for yourself; whether for cosmetic or health reasons. Because honestly the world will never be fully happy with you, so you need to be happy with yourself.
I say this as someone with a thyroid issue and having had a hysterectomy cause of endometriosis. I went through hell in high school hating myself and being Anorexic; at my smallest I was a size 0 and 95 pounds and too unhealthy to donate blood and would pass out just walking. So then when I started having surgeries and falling apart and gaining the above, I gained weight and no matter what size I have been, the world has looked down on me and hated me.
So whatever you do, do it for yourself and even the ones you love but not for the world. Ignore the world cause it doesn't have your best interests at heart.
Puberty started early for me, and I got dozens of stretch marks as a 9 year old, and they’ve just collected themselves ever since. Any time my body changes size or shape, I get more. They don’t bother me as a 30 year old in an almost decade long committed relationship, but they crushed my confidence growing up. They’re not even particularly well represented in fat positive spaces. Like, yeah, I’m big and beautiful in this bikini, but no one wants to see those, so I better find a strategic coverup. Seeing Target ads including stretch marks made me cry.
I have chest deformity big rib flare at the bottom and severe sunken chest at the top. The sunken chest has been surgically corrected because it became unstable due to eds and kept sinking in further abd further crushing my lungs and heart. Pushing my heart down into my stomach, stretching my diaphragm, irritating my stomach into gastroparesis. So much fun. But all people saw was how ugly it looked. My insurance refused to pay for the surgery for 2 years since it’s only an aesthetic desicion, which it wasn’t for me at all! I had less than 50% lung and heart function left from the crushing and I was starving. Still people only saw the visuals and judged me for it. From telling me I don’t need the surgery to talking me I shouldn’t go out in public because it’s disturbing to look at. (It was visible through most clothes)
I also have acne (3differejt types) but I had less mean interactions with people from that than from the pectusexcavatum and rib flare.
This shows the long term effects of ‘ugly’ laws. So many people are so used to never seeing disabled people in public or in media, because it was actively illegal, that they never learnt that disability is just a normal human thing.
As a fellow eds person ( I just deal with my ribs popping out) it's not much but just know you've got my silent support. Insurance is stupid. It took 16 failed surgeries before they finally got me in to an occupational therapist who was like "oof you have hEDS and a lot of surgeries could have went well if they had just taken the time to care" but my insurance didn't want to get me in; they just wanted to fix a problem and get rid of me. I hope you are doing ok and not in a lot of pain and suffering right now.
@ one rib was near the top on the front was popped out after pectus excavatum correction surgery, and they didn’t listen to me about that either. I managed to get it back in after 3 days, becasue at least it was popped outwards and not inwards so I did 3 days of very gentle and weak pushing. You never know what you need your ribcage for until it hurts so bad you thing you might die from pain. Like even hand movement and holding my phone was almost too much for the first week after surgery.
And I got one rib near the bottom that’s always been popping in and out, but that doesn’t really bother me, it’s the structurally important ribs that are bad when they pop out.
I worry that becoming disfigured will make my loved ones withdraw from me and rescind their affection and care. I used to think Metamorphosis was a bit hyperbolic (you know, for the message's sake) but no... that's real. I've seen it. People you never would've thought capable of it will suddenly pull away when you become ugly and inconvenient, and you will die (emotionally at least) like an insect on its back, legs thrashing.
Metamorphosis is more a clean allegory to becoming disabled. You know the protagonist was the breadwinner before it happened.
Just know that not all people are like this, fortunately. My family has mental problems they need to work on, but NONE of us have abandoned each other. My dad is a hunchback from needing several spines replaced with metal ones. I have slowly deteriorated over time due to underlying birth defects. My mother's stomach and organs are just dangling down into her legs due to her stomach lining failing and thus her whole body just herniating. Everyone in my family has either (and in some cases both) become mentally or physically changed over time and yet we have never stopped loving each other unconditionally. The same thing can be said for my husband of 17 years, both of my brother-in-laws (in the family for 12 and 6 years but we've known one of them for 20 years) and my small circle of friends who has seen me at my lowest and highest points; and I have seen a few deliver kids (this go through bodily changes) or become paralyzed or transition. Real love, whether familial or romantic or platonic/friendship, withstands the tests of life and ignores how you change.
Hey, Rowan, I dunno if you’re going to see this, but I want you to know how much this video means to me. I was born with a cleft lip and palate, and despite our experiences with disfigurement appearing so different, you managed to capture my own thoughts and feelings so well. Especially with the Q&A of Aaron Schimberg. It really spoke to me.
Also the comments have been so validating. This entire video made me feel safe.
It's kind of baffling how we attribute any type of disfigurement with evil. I knew my step-grandma's dogs, a Pomeranian and some sort of toy poodle breed mix named Miffy. She did get her face messed up before and also was born with a deformed back leg as a puppy, I knew someone that said she would grow up to be like her mom, mean and vicious; all because of some deformity she was born with.
That's dreadful! As a neurodivegent person I love disabled dogs as they're my favorite animal and it makes me feel like they're just like me
Woof the comment about bullying not being an issue in your adult life, it suddenly becomes other stuff that's much harder to dig out and talk about. I have a skin condition that makes my limbs and face constantly covered in scratches, scars, rashes, and pimples. Sometimes it's fine, sometimes it's agonizing, but mostly it's a lot of getting asked if I'm feeling okay because I look "red in the face" or someone noting that I'm dripping blood onto the floor from an arm wound that's opened up without me paying attention. I was subject to a fair bit of the "getting asked out as a joke/dare" thing as a kid, but that stopped being actually traumatic levels of shitty after the third time or so, but my co-workers constantly treating me like I'm fragile or a bloodborne disease risk just keeps going forever as far as I can tell. Oh well, c'est la vie, I guess.
High school never ends. And bullying just becomes a different type of "bullying" in adulthood. People look at me funny and do this "hee-haw" motion or similar gesture at me whenever I look at them and that's how I know I am getting made fun of for my teeth. I get told "they are not, it's all in your head" by some people, yet others have seen it and try to explain it away and it's hard to explain it as anything but bullying especially when kids would do the same thing but actually made donkey sounds at me.
23:06 "Perfect design of the universe"?! Then why are so many people's periods painful? Why do we have a useless appendix that can get life-threatening infections? Not so perfect after all!
Actually we seem to have changed to thinking the appendix might have a purpose now. There are also way bigger imperfections in nature - for example, there's a nerve that connects the brain to the larynx. It goes all the way down into the chest, loops under the heart, and comes all the way back up to the neck. Which is already silly in humans, now think about how giraffes have the same thing.
It was a good way to do the nerve in our fish ancestors, but as the heart and larynx moved further apart, it was never enough of a survival problem to evolve something more sensible.
Whilst still a theory there's a notion that the appendix acts a bacterial storage unit, which may replenish the gut microbiome after an insult, such as illness or antibiotics.
And wisdom teeth. All they do is cause problems and most people have to get them removed.
The optic nerve come out right through the retina, so we have a sizable blind spot right in the middle of our vision. Our brains kind of fill in the details so that we don't tend to notice it. But if you're looking directly at a dim star at night, you'll have trouble seeing it unless you look slightly to the side of it.
Octopuses and squids et al evolved eyes separately and don't have this blind spot.
@@newsjunkie7135 the bible has an explanation, it’s obviously adam and eve’s fault! so now billions of people have to suffer for two people’s curiosity and disobedience, soooo just and fair
As an autistic person with a somewhat lack of facial expression, the deadpan uncanny look of an autistic person can feel like a disfigurement sometimes. Like I don’t have the facial fitness to express my true feelings and emotions.
I used to have this problem but I noticed recently that my eyebrows have become way more expressive. Especially my right eyebrow. I think bingewatching doctor who made me absorb the ability to make quizzical faces.
I mean, the fact that it's called "masking" when someone expresses and communicates in a more neurotypical way might point at the facial differences between the two modes
I also have a flat affect, pointed out by almost all my medical providers. It’s kinda awkward since, like, It’s not something I’m actively doing on purpose? Facial and fine motor control has also been a delay and hardship, so I hope I empathize with you similarly
@@dombo813 oh my gosh, same, for some reason eyebrows are way easier to emote with for me so i usually focus on emoting with those instead of anything else. also absorbing expressions from media is good but also evil because i exclusively watch cartoons so now im cursed with trying to imitate cartoon expressions
tell that to someone with an actual facial disfigurement jfc. that is an *outrageous* appropriation.
my mum has cleft lip and growing up I didn’t understand why she was insecure as it was obviously just how she had always looked, i didn't recognise her as having a visible difference as she had literally been one of the fist people i ever saw, it's still hard for me to wrap my head around it if I'm being honest. just my slightly off topic comment that is think is about social influences
I have a similar thing with both my parents. My mum has a few patches of different coloured skin, a big one on her cheek. My dad has a lazy eye. I don't think either of them are particularly insecure about it, I didn't even properly register it might be thing people view negatively about them until I was a late teenager. I like the way both of them look.
even more off topic, but i can really relate to this! i grew up with a physically disabled mother (was ill since i was born, started using a cane when i was about 8 and later a wheelchair). because i was so used to her being tired all the time and unable to run or go out too much, i used to get weirded out when other mothers did. i remember being 5 or 6 and being weirded out when i saw my friend's mum running to catch a ball. i started noticing other people making fun of her mobility aids or overhearing that people thought she was drunk because she has bad balance, and i didn't understand why, because that was just normal to me.
and it's not like i wasn't socialised either! but i think you have a real point that the people you grow up around in your formative years can make a real impact on how you see the world
1:11:30 just to be clear here: I'm not saying that bullying stops once a disfigured person reaches adulthood, or that it doesn't have any meaningful impact at any age. I'm not saying that anti-bullying/'just be kind' messaging is worthless.
What I do strongly believe is that, as with everything, telling people to just be nice and not bully (and telling the bullied to be strong/protect themselves) is kind of just a temporary solution (when it works), and we have to look at what's underlying, what's generating the instinct to bully and ostracise, and why those systems that allow the bullying (/systemic ostracism, etc) are acceptable to most people.
"and we have to look at what's underlying, what's generating the instinct to bully and ostracise, and why those systems that allow the bullying (/systemic ostracism, etc) are acceptable to most people."
You might not go far with that mindset though. While of course we can just blame capitalism for making it easier to ostracize or easier to bully or making it more acceptable to be cruel to others the actual underlying reasons is basic human psychology rooted in our biology. While it might be cool and dandy to pretend that people are just tabula rasas completely shaped by their environments facts remain that there are a lot of biases, features and traits of human mind which are universal across all cultures. The acne matter is best example as diseased skin is seen as unattractive in all cultures through the history. Just like group thinking and us versus them mentality are biologically hard coded facts of human psychology so is a dislike and distaste for individuals who are unusual and different. It is probably not an accident that it is faces which look like averages of all facial features in a society that are always seen as most attractive, for they do not deviate.
@AleksoLaĈevalo999 that's a heck of a lot of words :) I'm happy for you, though - or sorry that happened.
This is such an interesting video as someone who had a cleft palette without a cleft lip. I was invited to CLAPA's respite camps for kids with cleft lips/palettes but never went because my cleft palette never really affected my life beyond a slight lisp and choking on food semi-often and I didn't feel like I deserved to go. It's odd to reckon with my own internalized ableism around disfigurement when I had the same developmental issue as so many visually different people
i have to pause this video half way and take time to digest everything because it made me realize... im disfigured, too. i never truly pieced it together til now, but, its true. i also have endometriosis, i have burns and scars from cutting, i have Hidradenitis Suppurativa which is a skin condition, and i have holes in my skin from my dermatillomania (skin picking).
ive always carried a lot of shame over my disfigurement. burn victims are generally pitied, yes, but, mine were self inflicted. i was never given that love and grace when i open up about it because its "my fault". people are disgusted by my burns just as they are by my cuts/scars. but, they are especially disgusted by my skin condition. i have spent nearly my whole life hiding them, its gotten so bad ive become agoraphobic. ive had romantic partners accuse me of cheating, or accuse me of lying about my virginity because of my skin condition, (SI warning) ive been told to off myself, ive been called an attention seeker for my scars, ive been called a child for being unable to control my skin picking
i dont know how to deal with this newfound realization that i am disfigured... but, in a way, its good to know that i am not alone. thank you for making this video, ill go back to watching it now, lol
Your experience is valid ❤ I hope seeing yourself differently will help you cope with the unfair way people treat you❤. Your scars show that you went through hell and came out on top. They are showing your strength!
While mine isn't as visible, I have skin picking of the scalp and constantly get black sores that are visible due to my short hair, so I feel with you right there. I recently learned it is technically a type of OCD since we can't control ourselves from doing it. I have ADD and other mental stuff on top of physical disabilities and seem to especially use mine to bring my focus back or to ignore the pain for just a moment. I try to distract myself or wear hats and it's really hard to stop, so just know you are not alone.
I have Pierre Robin sequence and I find that my disfigurement has been rendered more visible both with my transition FTM and with society’s increased emphasis of jaw as a key component of attractiveness (ie mewing trend).
Hope some folks can help relieve the stress of the adsense nonsense. It's clear how much solidarity you find within these essays. Your community building is greatly important.
It’s interesting, thinking about how the definition of disfigurement is really negative, with the use of “spoiling”, and how it should be defined more as differences from the expected norm for skin and anatomical proportions/structure- like how some groups say “visual differences”- then hearing you bring up acne scarring and texture as a kind of disfigurement healed something in me bc it made the connection in my brain that I should regard my acne scarring and skin texture with the same neutrality/acceptance/sense of normalization that I think society should regard the visual differences that I had already thought of as being “disfigurements”
Basically that while I was thinking society should challenge the idea that disfigurements “spoil” a person’s beauty, you talking about your acne unexpectedly also fitting under the label of disfigurement made my brain go “oh shit, I need to challenge how I think about my skin”
Literally this, I've had acne as long as I can remember. Finally found a skin routine that was actually clearing it up pretty well, then had to go on a long term medication that brought it back with a vengeance. It almost broke me, ngl. That was 3 years ago and I'm still working to reach neutrality about my acne. We should start a support group
I'm really looking forward to hearing your take on this trope, Rowan. "The Elephant Man" is one of my favourite films, and delivers a fantastic performance from John Hurt, despite him not being disfigured in real life.
48:52 I've had many surgeries and could have had at least one more when I was 16. But my mom said it wasn't a necessary one and was only to change my looks. I didn't do it and don't regret it.
same! i have pierre robin (and a handful of other things but PRS most relevant to this) and abstained from a second jaw distraction surgery at 16/17 for the same reason they were all focused on appearance
Every time I see someone who's never even read or watched The Man Who Laughs call it a horror movie, or reduce the character Gwynplaine to "the inspiration for the joker," I'm linking them to this essay. In the actual novel and 1920s adaptation, Gwynplaine's disfigurement and Dea's blindness often have them fall into the "pitiable" category. Gwynplaine at least has the arc of confronting parliament, drawing parallels between the treatment of him and the treatment of the working class. But ooohhh no people just see a photo of Conrad Veidt in makeup made to emulate facial paralysis and immediately assume "horror film," contributing to the "villainous" category even though the text itself doesn't!
I really appreciate the framing of this video. So much of the discourse of pretty privilege is about those who have it, or those who used to have it but now don't (e.g., aging, change in metabolism causing weight gain, etc.) and them reminiscing in the good ol' days... This, plus how body positivity movements typically don't include faces, has meant that the people most impacted by this form of discrimination are often left out of the conversation completely. It can be really lonely, so thank you ❤
Yes! I have always struggled with the look of my face but I hardly ever feel represented by Body positivity discourse.
When I was a kid me and my sister were discussing how much we liked that they took the time to include animating scars Hiccup from How to Train Your Dragon. Then we started to question why this wasn't more common. We tried to create a list of animated character with scars that were categorically good guys. The list was so small we broadened it to any visual differences, still it was barely more than a dozen. I still have the list, 15 names sitting in my notes app.
I'm 25 and having Strabismus is a big issue to me.
I don't have to hear people say things anymore, I'm extremely insecure about it. I can't stare people in the eyes without feeling some sense of shame.
Hey, if it helps to know, my husband has the condition (it mainly affects one eye) and I gained it after a TBI so know that you are not alone my friend.
@@NoOneReallySpecial Thank you for the kind words.
And it’s good to hear that you are well. 🙇🏻♂️
loved this video! I had never thought of my acne as a disfigurement before either. And I hadn’t considered the scope of connections between the experiences of disfigurement and being disabled and/or chronically ill much. I have multiple disabling “invisible” illnesses and it was great to have some fresh (to me) takes. Thank you Rowan and guests!
51:05 Girl, I feel that so hard. Lifetime fatty, and although it's not the same, like that other lady said there's a lot of overlap in that venn diagram of experiences, and that was definitely one of them. Girls LOVED to tease their friends by coming up to me and telling me they 'had a crush on me,' while giggling themselves silly. Such a stupid thing that still somehow fucks me up to this day, so even though I'm a grown man in my 30s, I have to actively fight my initial reaction to anyone showing interest in me, which is suspicion and anger.
❤❤ I feel this.
This video makes me even sadder for the kids of anti-vaxxers than I already was. Some of the diseases we have vaccines for didn't just mess up someone's skin while they're sick, they left survivors with permanent scarring or other marks/bumps/discolorations.
It's been long enough since those diseases were widespread, many everyday folks in today's developed countries have no idea what a recovered victim of one can look like. I suspect we'd have a lot fewer people against those shots if they understood what they're leaving their kids open to.
while i think it's safe to be concerned about antivaxxers and kids with completely avoidable diseases because of their parents' choices, expressing pity for people with disfigurements seems to miss the point of this vid pretty hard? (it would be nice if parents cared more about preventing medical harm for their children than the risk that their kids would look "weird" or "ugly")
Side note: I can’t get over how pretty the books behind her are. I can’t tell if the art is on the spine or painted on the page edges, but they’re gorgeous
i was diagnosed with Bell's Palsy in July 2017 at the age of 24 and it absolutely destroyed my sense of self. i'm one of the rare cases that it never fully cleared up. at the risk of sound self-absorbed i definitely had pretty privilege before my diagnosis. my smile used to be so beautiful and people used to stop me in public to tell me how pretty i was. i took it for granted. now that i live with the asymmetry especially being a POC living in canada i've noticed a stark difference in the way people treat me. only within the last year have i started to gain self confidence back by surrounding myself with a good support system and i'm grateful to have people in my life who value me for more than how i look.
i grew up dreaming about being a performer whether it was acting or especially dancing. now that i don't have the face i used to, i'm unsure about my future in such endeavours 😞 how can i put myself out there if i'm scared to even make eye contact with people with how my face looks when i smile now
23:00 it isn’t just a monotheistic construct. I’m fairly sure it’s universal. Another case I know of is in “The Radiant Emperor duology” (In general a fascinating book on gender.) While it isn’t a Historic Novel, I’d say it’s history bending with a remarcably accurate portrail of hystoric events and culture.
There are multiple cases of characters confronted with systematic and cultural ablism. The eunich, an ex slave for example isn’t allowed to enter temples because of his disfigurement. The main character, a ex monk has to re-prove his worth and capability to her suporters after having lost a hand in battle. Later on the two forge an aliance and camp out at a tea house to kill some time and first get refused service then get ridiculed because the monk has a missing hand. They share an interesting heart to heart on how they get treated and how they get treated diffrently because where their disfigurment is.
The monk had a full life before disfigurement and accepts it as a part of him. The Eunich on the otherhand is primarily known as the EUNICH general. He gets treated as if he was something other than a man and constantly feels the need for proving his masculinity. Outside of the circles he grew up in how ever, outside of the army, his disfigurement is invisible.
I got really emotional watching this, I've struggled with acne forever and I've never thought of it as being disfigured either... very thought provoking deep dive. 😢
I'd never considered how disfigurement and gender identity might intersect before. Respect for a trans person's gender is often still predicated on their ability to conform to stereotypical gender presentation-how are you supposed to earn that when you're implicitly seen not as a man or a woman to begin with, but simply "ugly"? Is it harder to get doctors to take your gender dysphoria seriously if you're someone who's "supposed" to hate their body?
I’m a trans man with cleft lip and palate. My disfigurement is often used to infantilize me and as an excuse to not respect my gender identity because “of course you’d be desperate to be someone else” (direct quote from a family member). My transition is described by others as “mutilation” and makes people horrified by how I’d “alter my body”, but the surgeries that had my skull severed in half are treated as great, “life fixers” and were hyped up my entire life. One thing that was “good” about it tho is that, even before I was trans, I was already used to the looks, the people feeling so bad for my parents for having a child “like me”…
I was born with a bilateral cleft lip and a bilateral cleft palate and always felt weird reading fanfics since none of the female oc's in any of the stories I've read ever look like me. I have begun to write fics that have oc's with clefts(those who are HOH).
In my personal life I have been lucky to not have any bullying(possibly because I was homeschooled and my mom says I would be if I went to public school) And my family/family friends have always given me compliments.
Hey, I’d love to read your fics as a fellow cleftie
@@SpawnOfYogSothoth2387 Well what fandoms are you in? So far I've only posted a chapter for the Teenage Mutant Ninja Turtles (2012) show in regards to a character with a cleft.
@@bluueeberries well most of my fandoms other than Pokemon are very niche (Beyblade, Vocaloid, Project Sekai) but really, I’ll read anything
@@SpawnOfYogSothoth2387 My AO3 is Bluueeberries1110, I have been working on the second chapter but I procrastinate a lot 😅
I have a progressive disease called generalized dystonia. It causes uncontrollable twisting and muscle spasms throughout my body. The twisting is constant but also varies in intensity. In some ways I'm lucky that I was born "pretty". At this point only doctors see the disorder and not even all of the ones that should do. Unfortunately it also bars me from treatment because being pretty means that my deformities aren't getting treated.
Presently I don't think I'm disfigured, but in a technical sense I am deformed. The progressive nature of my disease makes me hyperaware of my appearance. At times I even feel disfigured (i know that's not true). I do see the differences that have already begun. There's always a looming sense that I could at some point become disfigured. I really want to come to terms with this and value my appearance less. It's a battle though.
Being autistic, I got by on my looks for most of my life. It makes me fear that if I become disfigured I'll no longer be valued by others.
On the flip side I have a massive scar on my chest from a surgery (I had sepsis and a bone infection at 15). I've never been self conscious about it. In fact it has been a source of pride.
One of my favorite quotes in regards to scars comes from my favorite band, AFI:
My skin is singed but it heals my heart
And with glowing pride I'll wear my scars
Honored by your hatred
Autism is an invisible disability, but I feel like I relate a lot to visibly disfigured individuals.
Most forms of autism shouldn't be regarded as disability, just as a variant of the norm. Disability is something that hurts people. Just like illness. Getting rid of disability would only benefit a person
The idea that your face doesn't represent you, that your mind's eye doesn't see your face, and that you don't want to take pictures will probably also resonate with trans people.
This is yet another amazing video. It seems that you slowed your speech a bit and I truly appreciate that. It’s easier for me to follow. I love following you down the path from media representation to real life atrocities. As someone who is aging toward being considered less and less attractive, this video hits home for me. I also have partners who deal with disfigurement (burn victim and M.D.). Thank you for shining a light on marginalized communities.
this is an interesting watch as someone who is "just ugly," not disfigured by this video's standards that seem to include severe acne but not just normal zits, and seeing people who are considered disfigured who are closer to beauty standards than i am. the experiences seem very similar on the appearance level (while the medical side may be very different, being asked out as a joke is very much an ugly experience). the part on fat liberation seems to reflect this too. i was pretty surprised to hear that the one speaker turned down cosmetic surgeries because any doctor who would feel like she needs cosmetic surgery would feel the same about me, and i'm just a normal ugly person, while i don't think most people would assess her as ugly (and she's reflecting people having attraction to her and asking her out that hasn't been true for me as an ugly woman older than her)?
As a disabled and disfigured person - we are often forgotten about even in the disabled community - So I'm glad to see you talking about this!! one thing you kinda touched on here, but I wanted to share my experience with - is how loosing your disfigurement can sometimes have some of the same psychological effects as when someone gains them. I have a condition that causes tumors to grow on my nerves - both inside and outside my body. This obviously is very difficult psychologically, but after having some of them removed - it felt super weird. Like almost not recognising my body and feeling like I lost part of myself. Objectively, it is very good to have them removed; but Its not the amazing/euphoric experience people expect. I also often forget i;ve had tumours removed as they are MY NORMAL.
Ik you didn't use these terms exactly, but the ideas of the social model of disability and the medical model are super relevant and important when talking about the experiences of ppl with disfigurements.The 2 intersect a lot and its super hard/complicated to pick them apart, therefore the 'solution' is gonna be super complex. x
While not quite the same, I can kinda relate to surgeries being psychologically different afterwards. I have FND and hEDS and underlying birth defects. Most all my surgeries stopped some pain but failed and caused new issues. My recent hysterectomy really screwed with my body and it feels weird having that organ removed cause now things are prolapsing and I have a phantom pain in my side and that's just from that surgery. My wrists feel different after carpal tunnel surgery. My elbows.,.. I have to wear braces because I feel like i am going to snap. I now know I have proprioception issues but it's really hard getting people to understand the weird mind/body connection after surgeries.
was so thrilled to see this thumbnail pop up to begin with!!
recently i’ve been wanting to get more deliberate about uplifting / building together with people with visible differences & disfigurements as part of my disability justice politics. perfect timing, i didn’t even have to go digging for a starting point because i was already subscribed to you. thank you so much ✌🏻💖
Anyone else here with keratosis pilaris? I’m surprised I haven’t seen media with characters with it and rarely so with vitiligo. Im very self-conscious with my bumps I had in my whole life because my mom used to tell me about guys could run their hands on my arms and get disgusted with the bumps if I was in a relationship (and she wouldn’t stop freakin touching them, even when I tell her to stop). That hit a nerve that never recovered, and I usually wear clothes that hide the bumps out of shame and fear of people worrying that I could be carrying some contagious disease and isolate me. With how many people are out there that have this skin condition, I’m surprised I STILL haven’t seen media with main characters with that condition today.
Acne… yeah, everyone who struggled with them can easily explain it better than I could.
I have it on the backs of my upper arms and my upper thighs. Just always thought it was razor burn (even when I wasn't shaving =P) and then dermatologist said otherwise. Don't let it worry you in terms of relationships. Not everyone is that picky over stuff like that. I've got a lot of disabilities (mentally and physically) and when I met my husband 17 years ago, he didn't even notice my keratosis til I pointed it out and was like "oh." then just shrugged it off as nothing. So embrace your uniqueness. ^_^
My mom had a facial disfigurement-she called it her birthmark, but it was a swollen vein on one eyelid. (There’s probably an official name for the condition, but she was born in the 50s and I don’t think anyone was curious enough to investigate.) I never really noticed or saw it, but I know it had such a large impact on her life and sense of whether she belonged in society.
Getting ready to watch this one today with tissues on hand after bawling my eyes out after Commander Sterling's disability lens on Mouthwashing yesterday. I'm so glad that there's some big, topical conversations currently happening on disability in the video essay space.
Something that was briefly touched on that I thought was interesting was the connection between disfigurement and queer identities. As a trans woman, I related a lot to Rowan’s description of how she cared so much more about her own acne than the acne of anyone else. I quite firmly believe that people’s appearance shouldn’t stop you from gendering them correctly and all that, but it’s a lot easier to apply that idea to somebody else than it is to yourself. I feel as though I don’t deserve it if I don’t pass, or if I don’t at least try my best to. I feel scared asking anybody for the same courtesy I would offer others. I don’t have many friends, and I worry that they might not accept me if I did come out. Mostly, I feel scared of standing out. Living in the middle of a deep red state doesn’t exactly help matters either.
Something I’ve been revisiting recently is my sexuality as well. For a while I thought I was bisexual, but recently I’ve started to think I’m probably gay, that is, a lesbian. But, that’s a scary word for a lot of reasons. Bisexuality is a nice, comfortable label to hide behind. It doesn’t imply anything about my own gender, it’s vastly more accepted than transgender identities which makes it a lot easier to talk about casually, and it gives me the freedom to explore any attractions I might have without questioning something about myself. Lesbian, of course, is harder to claim for all of the above reasons, but there’s more to it than that. So much of how trans women are portrayed is just as weird straight men that want to get closer to women, and I can’t help but internalize a lot of that messaging. I don’t always feel that I’m ‘trans enough,’ or that I deserve acceptance, and the last thing I want is to make anybody uncomfortable by being in the wrong place. I think the reason that I’ve been so resistant to accepting that I’m a lesbian is the fear that maybe I am gross, that I won’t pass, that I am just unpleasant to look at. I think I’ve often felt a little bit of a subconscious sense of pride, that I may be trans, but at least nobody can accuse me of autogynophelia if I’m a bisexual - despite the obvious fact that those people don’t care if it’s true or reasonable or plausible.
I’m know I went off on a bit of my own tangent, but I hope you at least got something out of it if you read this far. I guess this is something I’ve been thinking about a lot, so it was helpful to write it down, and maybe it’ll resonate with somebody else. I’ve heard journaling can be helpful to sort through your thoughts, maybe I should try it some time…
~ Skyla 🩵🩷🤍🩷🩵
I live in Oregon now, but I had to spend a year in Arkansas and absolutely hated it for how they treated people. I have a lot of lovely trans friends and a wonderful trans cousin, so just figured I'd throw you out some love from here and I hope you are doing well and definitely hope you start journaling. It has really helped me with my disabilities/mental health journey.
Subtitles at 8:06 appear to be incorrect, I believe she said "[...] which comes from a craniosynostosis condition, a condition which falls under the craniosynostosis umbrella, called Crouzon syndrome". Loving the video so far, thank you so much for what you do Rowan!
I believe that's correct!
there are so many things I could comment on, but maybe the easiest way to get across a lot of the feelings this video has brought up for me is that people's thoughts and behaviours regarding disfigurement and/or disability will not change until society's views radically change.
I really connected with Mikaela's points about anti-bullying because "don't be mean" doesn't really address the multitude of negative beliefs (or toxically positive beliefs) people have about visual differences and disability that cause marginalisation.
As the years go by, we will slowly change in society. It especially helps that the older; less open-minded generations are going away and the younger ones are taking over and opening people's eyes to how much better the world could be if we stopped being so negative. It's like how much change we've seen in the world in terms of the LGBTQA+ community or even with women's rights.
I've noticed I tend to have a very different sense of beauty to other people. I think it mostly comes down to a mix between the practicallity of more physically visibly distict people being easier for me to recognise with my autism flavoured face blindness (acne and everything else included), and the fact both of my parents have unusual looking faces (of which both I like aesthetically). My dad has a lazy eye, and my mum has a large patch of different coloured skin. She was a few years back approached by one of the wommen in the dermatology department of the hospital she works at about removing the mark on her cheek, and she eventually got out of the woman that it wasn't cancerous or anything, the suggestion was purely for aesthetic reasons that her husband might like.
Also I had a 6mm overbite and super wonky teeth before I had braces for 4 years. I was never particularly selfconsious about either, I got super lucky that I didn't get bullied about it, the only bad experience I had out of that was being stuck only being allowed to read books from school well below my actual ability because I physically couldn't pronounce certain letters even though my mum actively complained about it on my behalf.
Hey, as someone who is Asexual and has always looked kinda odd, I tended to love people who were unique/different than the norm because they always seemed more authentic and open-minded and were like me and so I gravitated towards people like that. I, too, have an overbite and had trouble pronouncing things but I cannot afford braces because it would cost close to $20k to rebuild my jaw and get braces and stuff and at 34 with hEDS destroying my teeth, it's not worth it. I recently discovered my mispronounced words were actually from genetic hearing loss and less-so my teeth believe it or not.
@NoOneReallySpecial I'm also ace :). I got lucky that my teeth were so bad they effortlessly fit the criteria for free braces via the NHS. I think my orthodontist put me down as at least grade 4, possibly 5 on their 1-5 tooth weirdness scale. My sister's braces weren't free though.
The video going out and making me realize I am disfigure bc of my autoimmune disorder. Even tho i was explicitly told it could change my appearance and that when it was on my neck we just tried to not aggravate it but once it moved to my face. I notice it every day on my face even tho its responding to treatment I asked multiple times if it would ever go back to being normal. Sometimes when I dont wear make up or like we started being lenient about masks (which used to cover it up mostly) my friend said you've got something on your face. We were in lunch I knew she meant the mark and I played dumb and watched as she tried to whipe it away idk why I did instead of not telling her right away...
Not me being born on june, being queer, and scleroderma awareness month being june (i have morphea scleroderma which is just localized scleroderma and not systemic aka I only have it on subcutaneous tissue aka the tissue that covers your meat vessel)
Oh I found a story with my condition on changing faces love to see it.
And the funny thing is I was diagnosed fast enough and started treatment early on and i had the discoloration but not the tightening of the skin yet. I being a stupid teen did neglect puting the immunisupressant cream on to the back of my neck whre I had another lesion. So thats the only part that has the collapsed tissue look. The rest remained as discoloration after almost 4 years of useing the cream i am now in a stage where I stopped it and it hasn't gotten worse but im also anxious almost every day amd keep a spare tube of the cream in my room. And the thing is there is "treatments" but no cure and I am stuck with it and even my professor who thought about immunity in med school didnt know my condition as an autoimmune disorder (turns out its quite rare thus lack of research thus lack of treatment options)
The article also talks about getting misdiagnosed with vitiligo which happened to me too bc I also have vitiligo. My current dermatologist actually did a biopsy bc she was not sure it was vitiligo (around when the redness kicks in befor the brown coloration) and she took two samples one from my clearly vitiligo skin and the other the lesion I neglect the back of my neck. And wha woom there you go I have both
Stellar video, Rowan! It was great to hear from Mikaela and Bronwen, too.
Disability and masculinity in Victorian Britain is fascinating. You can see the roots of internalized misogyny and ableism we see among men in the West.
I'd imagine that phrenology and psychology during that time has also played a significant role in perceptions of beauty and the supposed criminality of disfigurement. The idea that disfigurement predisposed someone to "insanity" or criminal acts was so rampant that "beautiful" people were less likely to be suspects of things like murder. Look up sketches of possible suspects for the Jack the Ripper murders and you'll see what I mean!
20 minutes in, I've had surgery on my sinus at 30 that was malformed which pretty significantly changed my eyes and shape of my face and cystic acne. I can certainly relate to the internalized Abilism and sense of self and claiming of certain words and indentity.
So sorry to hear about your adsense that's really stressful. Wishing all the best with getting through this and appreciating another deeply thoughtful essay so far.
Thank you for giving me that same sense of "... Am I disfigured?" Having also struggled with acne and other visible but changeable things, I've never acknowledged them as disfigurements, firstly because I considered "true" disfigurements to be permanent things, and second because I didn't want to give my own blemishes that level of acknowledgement, that level of... power and control over me, as being something permanent that I could not change. Setting that mindset aside, I shall now continue listening to your video.
I was caught off guard when, listening to the video, i was thinking the reactions deacribed matched my experience with being fat and having eczema, and you, Rowan, brought uo the comparison yourself. The "being a joke challenge" as a romantic consideration for men, who wefe my bros unless somebody remembered my crotch. The accepting internally that I wouldnt be lived by someone who loved me as I was, but in the best case scenario love me Despite who I was; and more likely, making peace with not being loved at all; because every message regarding people who looked like me was tbat they were disgusting, unattractive, ugly, evil, give the ick; but then, when I said that I was expecting to be regarded that way, my loved ones would say that Im beautiful. Am i really beautiful? If i wasnt your family/childhood friend/etc., but instead a stramger out in the world, you'd be laughing like those other strangers did, you'd be daring boys to talk to me, you'd be saying how outrageous it is I dare to wear clothes that are not a full body moomoo. This is probably wrong to say, but out of all of the examples I only thought the cleft palatte was a disfigurement; and I was appalex at the definitions of the word disfigurement, because they all sounded so vicious, like disfigurement ia something done onto somebody else as an act of violence, to remove their moral right to beauty; when honestly disfugurement is just being born/being changed by life events into something outside of the belly of the bell curve. Something evil can cause disfigurement, like if you unfortunately were attacked by an enemy, but also you could have like, survived a weather related accident (?). Disfigurement is not a punishment, and furthermore not a moral punishment for being evil like a cartoon. Speaking of cartoons, the hunchback of notre dam hurts to watch for me, because the girl never sees the main character as a love interest; to me, it was a reminder that when you body is not in thw belly of the bell curve, you are assigned asexual/aromantic (repulsed to sex/romance level) without your input; you are a great friend, but you arent the target of passion, or yearning, or possibility, or illusion. You are you, detached from everything and everybody else; and by yourself, you are not part of the pool of love interests. At least thats how you feel. Plot twist you learn years later that dudes were into you (dudes who arw probably a little fruity), but nobody had the courage to date you. Why didnt they say anything? Because you were outside of the belly of the bell curve. Im tired. I do appreciate this video for expanding my understanding of disfigurement and making me aware that this is another fight to stretch solidarity to. Thank you for making this video Rowan. And thank you for not putting Wicked in the thumbnail, I would have skipped it just to avoid the trend right now 😂 😂
I really get what you mean about the "are you disfigured?" question. instinctively "no", but...
...I'm 6'4". for a cis woman of my nationality, that's "the height conversation is a lot of people's go-to introductory small talk with me" sized.and that make a lot of this relatable.
I don't think extreme height counts for me, but I really think it could for others. I am aware, for example, that very tall straight women often find it's an obstacle to dating (in the same nebulous "is it that people won't date them or is it that they assume [difference/disfigurement] makes them unattractive?" way people described in the video). when my parents met and dad asked mum to dance, my mum was genuinely surprised dad still wanted to after she stood up.
I wasn't expecting to relate to this video as much as I do, but I got about halfway through it when I realize this is the experience I've had growing up with a very stand-out birthmark above my eyebrow. I was bullied and alienated for it, and that experience also fostered the same sense of "I'll never be desirable" as it did you guys. Thank you for this video, Rowan 🌻
hearing about the relationship between transness and disfigurement struck such a huge chord with me ngl
it like when you hear something you already know and yet it feels like new information because youre actually thinking about it
Thank you so much for a thorough and thought provoking exploration of disfigurement. I just wanted to note my understanding of Auggie's award in Wonder had to do with him bringing people together, not just being courageous/ brave and getting through. I feel like you've captured the lived/ living experience really well, particularly the mental health impacts- a lot of it resonated with me as a disabled person, with a few lightbulb moments of things that I hadn't connected with my own disabled experience. Thank you 💙
I just watched Wicked today so this video is oddly timely
tysm for making this!!!! i’ve had a facial disfigurement all my life due to meningitis and it’s made everything so hard ppl make judgments based on something i can’t even control im 23 and have no friends basically and im starting to realise it might have something to do with my face and disability 😑
the non-auto-generated subtitles seem to have a lot of errors. enjoying the video but thought i should make sure someone points out a pretty significant issue
Seconded, it kinda bothered me as well.
Thanks for pointing this out - I’m going to looking into this this weekend!
Glad your Adsense is back!
Thanks!
Havent finished the whole video yet, but i appreciate seeing my two favorite disney characters next to each other in the thumbnail lmao
The thing about the Idea of God being a being of perfect desgin at 23:00 reminds me of the Japanese song called "Gira Gira" (ギラギラ) by Ado, which is a about a girl thinking she's ugly and disfigured, but in the end she finds out God made her in their Image.
i'm at 19:35 and as a trans person i can relate to that experience pretty fucking hard. i think it's just the nature of this kind of marginalization.
Trans person here. Yeah. Been comparing the whole time half-subconsciously
Isotretonoin or accutaine was such a game changer for me, and no matter how shyte my life is rn, and it is very much so, at least I don't have painful protruding pustules pestering me.
I think a good story about a character who can be considered disfigured is the cursed princess club web comic that was turned into an actual graphic novel. The main character is also a teenage girl, and I think that is really important considering the pressure on teen girls to look beautiful.
I was born able-bodied, but became physically disfigured in my early-20s due to a traumatic injury. I’ve struggled with how to feel about my disfigurement because while I, and people who knew me beforehand can see a difference, I appear relatively “normal” looking to people who did not know me prior to my disfigurement. Thank you for covering this topic with so much nuance, I have a lot to think about thanks to your influence.
Passing privilege is such a double-edged sword. Things like having invisible illnesses, orientations or identities, being a migrant or mix-raced... We live between worlds, in that liminal space that has some of the advantages and disadvantages of both, but it also has its own particular struggles. We don't suffer most of the blunt, active direct discrimination others in our minorities do. But we do get denied our realities, have to justify them and tend to feel lost and that we don't belong. The percieved belonging to the opresor group makes us witness a lot of that discrimination with the raw hatred society makes them limit to their ´peers´. And we deny our own needs because they are not as intense or visible or known or explainable or whatever.
I have a big scar, but it's on my belly. I am a late diagnosed autistic woman with just level 1. I am aroace, but never had to turn anyone down. I have chronic illnesses, but they rarely affect me in my day to day life. I've been deppressed and with anxiety for years, but could always function well enough (with sick leaves from work).
This is my first time seeing a video of yours, and what an incredible and insightful video to be my introduction to your channel. This video game me quite a bit to think on and consider, thank you for creating this.
Always look forward to your videos! This sound fascinating
I just felt a sudden need to remind you that you're loved and needed. You're always beautiful, I'm sure that even without anything covering the problems you mention, you'd still be one of the most beautiful people in the world. You're alwaus beautiful, inside and outside. You're always loved and needed. Thank you for being here. I'm really happy you exist.
Came back here after seeing “he has a birthmark like me” and happy cried a lot. Representation is more important than we realize. Some people are still invisible.
This is the first time I have found out that being slightly larger on one side is a think that a surprisingly a lot more people have and that being covered in a bunch of small acne scars classifies me as disfigured.
OMG! MIKAELA!!!! Only just starting to watch but it made me so happy to hear from her, since I left Twitter a while back I hadn't known where to follow her
😊
Can I just say you look so incredibly cute in the sponsor clip with your no makeup makeup look 🥺
Not gonna lie, scar was probably my first fictional crush.
got here at the perfect time to watch from the start of the premiere!!
I grew up with an underbite that got significantly more severe as I entered my teens, and I absolutely felt subhuman because of it. It was corrected with surgery when I was 18 and yet I’m still constantly so paranoid about it- that I should have gone for a more extensive surgery to alter the top of my face, that I got TOO much surgery and my face isn’t my own, and that everyone around me is still repulsed by me and is simply lying. Seeing a side profile of me by accident through a photo or a strongly cast shadow can send me into a paranoid spiral where I can’t leave my house for days because of the internalized bullshit. I still have difficulty pursuing romantic relationships because of this. And this is YEARS after no longer having the underbite.
Despite all this, despite the only realistic-looking portrait of someone who looked like me in my teens being the fucking Hapsburgs which are almost exclusively used as a cautionary tale about how incest makes people into ugly mutants (not my words), I’ve never considered myself part of this community before or someone who needed positive representation. So I want to thank you for that.
Underbite community
Recently watched lion king so i‘m interested in hearing your new take on scar :)
I interviewed a dietitian for my thesis about fat stigma. She said something about this idea of external/visible disability and unseen disability and how people see themselves differently. Basically, she said that women either face fat stigma or they fear it so much that it causes them immense stress. For her patients, fat clients don’t experience a greater impact of the stigma than thin patients, which makes sense considering how it is imposing this threat of violence and shame and hate that fat people are already used to and know it’s limits, whereas thin people can only imagine losing love and safety that they already have, believing they would lose everything if they got fat. Fat people have the knowledge that their loved ones aren’t going to leave them-they are already fat. There’s safety in fatness (not to mention the avoidance of bad dates or SOs who leave their wives when they gain weight I pregnancy, something fat women know wouldn’t happen with their SOs).
To be clear, I am fat and have been my whole life other than one year. I don’t know how I feel about this idea, because like the acne discussion, I might chose being thin over having my autoimmune disease. If even take a love that was based partially in my thinness than the lack of love and the fetishization I’ve experienced as a fat.
Oh interesting! I would add though that it's not just about thinness, it's about doing thin 'correctly'. If you happen to be too naturally boney, for example, watch out. People will go out of their way to let you know just how scary/sickly you look (personal experience). It's much more about being legible as healthy than actually healthy. And, with diet culture, people don't know what healthy actually is and they have a lot of anxiety about it. So they body shame others to try to self-regulate, because obv it's not body shaming if it's 'out of concern'... And if your body is read by them as non-normative, you're expected to joyfully be their impromptu therapist and punching bag. I'm so over people not doing their own emotional labour; it's exhausting. :|
Honestly, it's not really so black and white. I have been on all spectrums; from really skinny to obese to normal weight. I was anorexic and skinny and 95 pounds/size 0 at my lowest in high school. Lots of factors like self-esteem, disabilities, love, poverty... made me skinny and I got bullied for it because it was unfair to others around me. Then when my disabilities got bad and I started having nonstop surgeries and I gained a lot of weight (thyroid started failing) I got bullied and made fun of for my fatness. Now I am an average plateau anywhere from 140 pounds to 175 pounds depending on factors like how my pain and mental disabilities are doing, etc. and I still get made fun of. People will point out the negativities in past and present pictures. All I care about is that I am as healthy as I can be. I hate that some clothes I love don't fit anymore but that's mostly cause of my breasts and I am learning to sew to change that. But yeah... I think the judgement on weight varies on all sorts of factors. For me, since I was disabled, I don't get as much hate as my sister or mom or friends who are overweight have but I have experienced it.
@@NoOneReallySpecial Oh yeah I definitely wasn't trying to make it black and white. My point was moreso that it is nuanced and usually not just about one issue. There's an aspect of legibility, esp as related to health. And some people just like to comment on other people's bodies and will do whatever mental gymnastics they need to be able to moralize that. Any way, I'm sorry you had to deal with those comments on top of everything else you were going through; that's not okay.
Watching this video and realizing my scoliosis also makes me disfigured, albeit not in the face where the video focus is. The word disfigurement has always just felt so extreme and somewhat fictional to me, like TwoFace from Batman. This was definitely really enlightening for me!