Let's Talk : MCU Sam, disability and ableism

Nathan Wagner - Paranoia (Remaster)

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It's not really a theory post, it's rather another very personal one.

But anyway.

MCU Sam truly touched my heart. Not just because it's Tim Blake Nelson behind him, not just because it's Sam and not just because of all the Hell I've been through to see it.

There's something about him that is just way too familiar, in a bitter-sweet way.

So today let's talk about that, let's talk about how MCU Sam reasonate in the heart of a disabled person and why.

My disability is invisible.

Basically my main disability is being always tired and anxious. It's very hard to explain because people will (and I'm sure a few of you did) always think or say "well, I'm always tired and stress too and I'm not disabled, this is just life, you're just lazy" or "maybe I'm disabled too!" or "exhaution isn't a disability" or "have you try actually sleeping? Going out?", you get the point.

But I'm not talking about a simple sleep deprivation, I'm talking about the total inability to actually rest. Waking up everyday with sore muscles, dizziness, headache. Heavy body, bad mood, tired mood, depressed mood. The inability to properly think, to focus. Too much thoughts, too much noises, too much repressed screams. Eyes burning (annoying when your main income is drawing on a computer screen), nausea. Oversleeping, also. Needing to sleep everywhere, sleeping all day (making your life quite short even if you live long enough) and when you sleep you dream and you dream and you dream and most of your dreams are nightmares so if you spend most of your time sleeping, what's your life but a never ending nightmare? Have you tried forcing yourself to stay awake when your eyes close by themself? It's hard, that's why people tend to fail resisting Morpheus' sweet embrace. Well I deal with that most of the day and most importantly daily.

Do you know what sleep deprivation does to the body and the mind? Well I do, because I try to limit my sleep time in order to just live.

When I say I don't have time to do shit that's because most of the time I NEED to sleep, it's physically painful and impossible to stay awake. I was tested for narcolepsia type 2, everybody was convinced that's what I had because my symptoms are the same. But it's not and my doctors still can't explain why I have the exact same symptoms but not this specific illness. Like, it's here, everything is here, on the several tests I did all the symptoms are here but it's not this illness specifically. They can't explain why I'm in a "sleep deprivation" even after a 12+ hours sleep, why I mostly get stuck in the dreaming phase of my sleep and stuff like that. I have a rare brain tumor. It's not deadly (not directly, at least), in fact the tumor itself is dead. But it's how it's placed (impossible to remove) and how it fucks up with my grey matters that makes it a huge problem. It's a 1/12 000 000 illness so it's not something we have much knowledges on, because every patients seems to be different, because it depends on where exactly that very specific form of tumor is I guess. I have a lot of illnesses, my whole hormonal system is fucked. I don't have a thyroid anymore, I have an adrenal insufficiancy, I have ovaries issues, I'm intolerant to my own hormons. It's an absolute chaos.

I was also born neuroA. I'm both autistic and ADHD.  I know people tend to turn down when they see these world, "yet another autodiag" "yet another folk seeking attention". But folks, I have a brain tumor, trust me I don't need to make up shit to get attention. It's a diag I got recently and it's relevant in the way that it impacts my capacity to deal with emotions (which is already impacted by my illnesses) and my anxiety. To deal with people, to show empathy etc... You get it. I also suffer dissociative disorders (like derealization and amnesia) and PTSD. And so, ultimatly, I developped a very severe anticipatory anxiety issue, which led me to a very bad case of agoraphobia. And by very bad case I mean I was absolutly unable to leave my room for more than 10 years without having panic attack and even fainting.

I'm also not allowed to feel strong emotion, because neither my body nor my mind can deal with that. I'm not emotionless, of course, but it makes it difficult to deal with emotions and so, from time to time, I get carried away too, like Sam when he goes from a very cold emotionless shadow to that explosion of feelings. Because I have to stay as calm as possible, thus my pragmatism and somewhat antipathic "cold" approach of people and their problems. I don't lack of empathy, rather that I'm used to reasonate myself in order to kick down emotions.

I can literally die of strong emotion and stress (physical of psychological stress), it's not just a psychological inability to deal with it, it's physical as well. Like I said, my whole hormonal system is fucked up. So I deal with both physical and psychological symptoms, they both impact each others. That's why I'm not allowed to work like a normal person and can only go through freelancing with my own rules, for exemple. I also lost a part of my left hand through bad posture (I can move it but my touch sense is almost gone and I can't properly grip shit). It's not related to my disability and it doesn't really impact my life except when I need to open a jar or put makeup on but I wanna mention it because it happened through bad posture and I know lots of you think we're overreacting when you talk about bad posture so stop fucking leaning on your elbow and hand, put that arm down, correct your posture and now you can keep reading.

I guess there's more that I'm just not thinking about, but you gotta understand how my daily life is about struggling to stay awake, to just stand up, dealing with anxiety, nausea and struggling to behave "normally" around people. And yet, you have no idea of the amount of time I've been told I didn't need my disability card, people insulted me, threatened me when I used my priority pass because "you doesn't look disabled" because all these symptoms are just not visible. I mean, I'm pretty, I'm loud, I'm happy and joke a lot, so why would I be disabled. Disabilities are about being fucking miserable, aren't they.

It's hard to find representation in an ableist world, because if there's something people hate more than everything it's disability (especially mental conditions). I'm not saying we have it worst than anyone else of course. Every social issue is different but equally unfair.

We are highly instrumentalized to hate on other minorities "being gay/trans is bad because it's an illness", you get what I mean. People never care about us, it's always ok to ignore us or make fun of us or to use us as an insult and a disgrace. And the only time they do care it's only to make it okay to hate on another group of marginalized people or when they can use us for their own ego boost, to "help us".

A good disabled person is a disabled person who is visiblty disabled and very heavily disabled (preferably dying to add to the hero syndrom) so everything valid people do to help them out daily is seen and praised. Of course they must also always be smiling and fighting against their uncurable condition (and so themself) because a good disabled person is a disabled person who behave like a valid person.

The world doesn't want to adapt to you, nor to help you. The world wants you to behave like a valid person, to contribute to the system. It doesn't matter if it put you in pain (physical or mentally), it doesn't matter if it leads to self-hatred and harm, the only thing that matter is that you conform by any mean necessary. What good are you if you can't somehow participate to the society? Produce or die.

So if you can't do that, if you can't behave like a nice little NPC at least be useful to the people in power, let them weaponize you and steal your smile to praise themself and how nice they are, otherwise you're nothing but a waste of time, a burden. You're not even human, not even a monster, because people do like monsters. You're not even good enough to be one.

And if you dare mentionning it, jeez, how fucking ungrateful you are!! I'm not saying don't help disabled people, of course, unfortunatly we need help because this society made us helpless on purpose and I'm glad there's people to help me out. But let's face it, you're less likely to be helped if you're not a child or an elder, not visibly disabled and so if the person helping you cannot fucking brag about it and turn yourself into some carnival freak.

Being disabled is not just about suffering a condition, it's also about suffering yourself, struggling with self hatred and it's also struggling against a system that openly hate you and dehumanize you. Most disabilities would actually be very comfortable if it wasn't for all the societal issues we're dealing with daily.

It's similar to a toxic relationship. You're being alienated and gaslighted by a system that will destroy all your confidence and self estime, that will teach you to hate yourself and to think you're no good and once in a while that system will send you praises and shit so you can actually feel thankful to it for sticking to your useless ass. That's how ableism works.

I wasn't born disabled, keep that in mind when you think we're an affordable sacrifice. We will all end up disabled and if we don't it means we will die young so you better start taking care of ableism.

I wasn't born this way. My tumor happened when I was a few months old but even with a few anomalies and sleep issues, I still had an ok life. But then I reached 18, my health went crazy. In a blink of an eye, in one single day, my whole life changed forever.

It was 16 years ago.

After that I stayed in my bedroom. Sure it's more comfortable than a prison but it feels all the same when you can't do shit or leave it.

That's why I started collecting stuff related to what I love, because you have this very human need to make your prison as comfortable as possible by just putting everything you love everywhere, as a way to cling to what you love and to cling to your hope. Sounds familiar, isn't it? After all, that's what Sam did in his own prison. That's why I understood that way too well.

But eventually I did loose my hope. I broke. All this weight was just too much for me, no matter how loved I was, I broke down.

But who wouldn't.

I didn't feel anything but the emptiness of my lack of passion and a painful ressent against the world and against myself. Because that's the funny thing, my anxiety isn't born of my illness, it's born of humans and how they treated me. Specifically in medical yards. My illness only make it way stronger and harder to deal with, but it's humans' abuses that made me this way.

When I was younger, I was a lil' ball of light. Talking way too much about whatever I was into, always smiling, always trying to be positive, always followed by a lot of friends. People liked me because of my very weird/cringe but passionate and compassionate nature. I wanted to save the world and I remember being upset at my mom's answer when I asked her why there were people sleeping in the street and how I would give them money so they could have a home too. "It's not that simple". I loved humanity.

But I broke. And as much as I tried to pretend that I was still smiling, behind that mask I was empty, scared, angry and in pain.

And I tried to silence my ressent, hoping that one day I'll go back to my previous life. A life where I wouldn't need to think about all the way I might kill myself or get killed by people's abuses by just going out. A life where I could appreciate things.

A life where I had a future.

A life where I was a human.

When I first watched the movie in theater, Sam saying he stayed in that prison for 16 years hit me incredibly fucking hard, for obvious reason. I had this very physical reaction to just giggle, close my eyes and lower my head with a lil' laugh, the "of course it is..." kind of reaction.

I'm gonna try to not repeat too much what I already said in other posts but long story short for those of you who haven't read the rest (or don't remember it) MCU Sam is a character that went from a ball of energy and positivity to a sinister empty ressentful shadow because of one bad day that led to 16 years of pain, abuse and isolation.

From the way he behaves as the Leader to the way he looks, he really gives that "tired and sick" vibe. The way everything looks so painful. The brain, the blind eye, the way he moves and talk. It's not hard, even inconsciously, to see him as a disabled lad.

He was abused by a system (represented by Ross) that wanted to take the best out of him, worsening his condition instead of helping him by either curing him or just making him live with it, to drain everything he had to offer. If you're disabled it probably sounds familiar 'cause for most of us it's not about getting help or getting healed, it's about making rich people richer and when we can't pay anymore, once we're useless, only death await.

And so, when he finally broke his chains, his first reaction was to try to set the World on fire (starting with Ross, kind of literally given Red Hulk's heat skin).

MCU Sam is a character who hates himself a lot. His comics self too but it's less obvious in the way that he acts ultra confident to hide his insecurities. With MCU Sam it's visible, it's part of his writing. He hates his look, he hates what he became, he hates everything about himself. All he wants is his previous life, a life before the mutation, a normal valid life. But he can't.

When he breaks free, that's the first thing he understood, he can't. And he violently rejects this perspective, having a different life, being a different person. So he hates everything.

Which is a normal reaction you face when you become disabled.

We live in a system that make you think the worst possible shit that could happen to you is disability. Let it be physical or mental. If there's one thing people fear more than death it's a life of disabilities. And the movie perfectly illustrate that by making Sam's faith worst than death. His life is gone but he's still alive to suffer that loss.

So when disability hit you, your first reflex is often to reject it. And I did too. It took years to have the "official statut" because I kept saying that I wasn't disabled, that it was just a bad moment, that I would also have my life back.

So when I realized I wouldn't, all I felt was anger and pain. Because when your like is over, when you're dying, when you're suffering, while all these people rotten by bigotry who are spending the life you lost to hurt people, all you feel is anger and hate.

And then you enter that system, like Sam, that will whisper lies to you, making you feel like with their help you can have everything back. With a bit of will you can achieve everything after all! How many time a day do you ear that? "where there's a will, there's a way", you have no idea how much I fucking hate this kind of bullshit.

So you trust them, you trust the system, you let them abuse you and dehumanize you and you try to look valid to please them and to fit, even if you know it's useless.

Like Sam trusting Ross to help him while all he did was worsen his condition and while knowing he would betray him.

When I see MCU Sam, I see myself.

That naive passionate lad who burnt himself through the fire of his passion.

Emprisonned for years by a system that let him down.

Trying to make his prison acceptable by bringing the outside World to him.

He's like me. The way he talks, the way he moves, the way he thinks, the way he hates, the way he hates, mostly the way he hates. I know that feeling way too well.

The hate he felt when he saw his own body changing

The hate he felt when he understood he lost everything

The hate he felt when he realized all the abuses he went through

The hate he felt against a World that casted him away and abandonned him as soon as he wasn't useful anymore.

The hate he felt when all the fire of his passion died

The hate he felt when he realized he wasn't human anymore

The hate he felt over his new limits The hate he felt over his new self

It's all about hate when you're disabled in a world hating disabilities and so ipso facto the disabled. Even in your healing process, all you're being taught is to hate.

You're praised when you behave like a valid person and push your limits, no matter if it put you in high discomfort or even danger. Hate your disabilities.

You're praised when you don't complain and keep smiling through the pain, don't complain. Hate your fatigue and limits.

You're praised when valid people need to do their weekly good deed. Hate your dependance.

You're praised when you die. Hate your life.

"poor you" "I'm so sorry" "you deserved better" "it must be hard" "I would probably kill myself if I had to go through what you go through".

Hate yourself.

We aren't taught to live with disabilities, to learn our limits to avoid losing our mind and hurting ourself, to accept ourself, to control ourself. We're taught to fight, to fight, to fight. To reject that condition we can't get rid of, that is part of us and so to reject ourself. Because that's what strength is about isn't it. People call me strong because "wow damn, how strong of you to live given your shitty-ass life, I'd rather die than going through what you go through" (apparently it has to be said but it's not a compliment folks).

We aren't allowed to live either, to have a moment of normality. I remember that one time someone blamed me for buying coca cola while being disabled because when you're disabled you're not allowed to enjoy shit. You're not allowed to be happy. Because that's what being disabled is about, it's about being miserable.

And you know the thing that felt the more realistic about Sam? It's how the movie is about forgiveness for everyone but for him. Sam Wilson forgave Bucky, he forgave Ross. No matter if he ended up in the Raft too, he did with Sam Wilson's forgiveness but also his daughter. He got everything he wanted.

But Sam (Sterns)? There is no forgiveness for him. The movie erased everything that made him an anarchist and gave him a reason so the audience wouldn't feel sympathy for him either. There is no sympathy for the wicked and the wicked is always the disabled and the ugly (it's often the same thing in people's mind), isn't it.

That why the disability allegory works so well on him. Because everybody is allowed to express rage and ressent but him.

I have people praising Loki and Bucky saying Sam doesn't deserve to be understood. The MCU gave a redemption to Loki (the guy who murdered 80+ innocents in Avengers) because he's hot (and I'm saying this as someone who love Loki and his redemption arc, truly in my top fav character) so he's popular and forgvable. But Sam can't have one for killing his abusor and people who represent that system. He looks visibly sick, it makes him gross and hideous in people's eyes and there's no greater sin than that (beauty privilege is a form of ableism) so he will never ever get that chance of being sympathic in people's eyes.

And people hating on his look is a good exemple of that. "Comics accuracy", my ass, it's because he's "ugly" and "gross", that's what they all keep saying, how it's "ugly".

I was once shopping for casual grocery and at the disabled people only cash desk, in order to flirt with me, the cashier said "you're confusing me because you're too pretty to be disabled haha" and call me grumpy (because if a man flatters you, you have to feel grateful, even when what they say is fucking dumb) but all I could answer was "Because disabled people are ugly, that's what you're saying?" and I left in his silence. And it often happened to me, in fact. I was also told "but now that you're pretty you don't need your disabled card anymore" and that says a lot about beauty privilege and how related to ableism it is.

Sam is a good representation for that. He doesn't revert back like other gamma folks and I like how they took that road rather than having him being able to but chosing not to like in comics. It makes his destiny more brutal. Sam is diformed and inconsciously you think that he's probably ill as well and that's it, that's what he is and he can't do shit about it. Even with his intelligence. He can't be "normal" again just like we can't. So he will use the abilities born of his disabilities instead.

That's why I think changing his design was the right call. It was important that he looks like a monster, because that's what we are.

Ironic, isn't it. Every single person responsible for Harlem got forgiveness while he paid for everyone through his own blood and tears, all of that to end up in another prison.

Would be cool if this injustice is adressed if we ever see him again, but what to expect from a the studio that erased Bruce's mental illnesses. Certainly not a good representation of disability and our struggles.

And the thing when you experience injustices daily? You become incredibly sensitive to it. Just like Sam wanted to destroy society to erase every injustices and not just his (at least in his initial writing that I keep dear in my heart), you cannot look away to other people's suffering and it only makes you angrier.

I like how Sam hid himself with his hat or his hood and his sunglasses, because I feel the same. I like how Sam called himself a monster, because I feel the same. I like how Sam killed all the people who are somewhat related to his abuses, because I felt avenged.

I like how Sam is represented as a shadow.

He is everything we're not allowed to express. The rage, the anger, the pain, the ressent and the hate. He is that shadow that we're forced to repress. But also the shadow we became, because once you're disabled you're not allowed to be human anmore and you're the merely the shadow of who you are.

And I like how Sam is disgusting and hated, because even when your disability is invisible, as soon as your limits shows up that's how you're seen.

I like how he is the raw experience of the average disabled person.

Sam is the perfect metaphor for disabled people and I saw that a lot online lately, in fact, how all the people who loves his MCU characterization were suffering ableism and/or abuse themself (it often go together).

Disabled people are the embodiment of hate, through the way they're dehumanized, through the way they're alienated, through the way they're "healed", through the way they're instrumentalized.

And it's only suiting. In comics Sam is a literal God of Hate and that's what he is in the MCU as well, but in a very human way.

And that's the thing about this Sam. He's human. So he makes me feel human. He makes the wrath we feel human.

There's another thing that hit me hard with this Sam, it's how he missed his job. Everything was about it, his certificates, his computer background, the videos he kept on it. Sam loved teaching about his passion.

And you know that already if you know me but the most difficult and painful part of this new life of mine was to accept that I would never, ever be able to teach about my passion.

I wanted to be a teacher. And when I was told to forget about it, I didn't cry, I didn't have the strength to cry. But I could hear my heart screaming in despair.

"It's so unfair!"

There's so much about him that is just like me, even before he was the Leader. Even before Cap 4, I always felt very close to MCU Sam, because of his very ADHD/autistic behaviors that are just like mine.

The way he talked, got excited, moved (still move and stand in Cap 4), it's just a mirror of myself. He makes me feel seen and normal.

I have two side and they're basically human MCU Sam and Leader MCU Sam lol.

"oh, he's into plant, like me" "oh, he's a tea person, like me" "oh, he's a passionate little sunshine, like me"

"oh, he went through 16 years of pain and isolation, like me"

"oh, he's angry, like me"

"oh, he a monster"

"like me"

I once wrote to someone dear in my life that I knew MCU Sam would break my heart because I understand, because I was once a little sunshine too. But I wasn't expecting it to be this true.

But my life changed after a bad day 16 years ago too.

Unlike Sam, though, I had people to love me, I have people to love me, I have people who want me to live for myself and who support me in everything I do. Everytime I let myself sink in hate and sadness, everytime I give up I have people to love me.

I know how privileged I am for that and one of the reason I share so much about myself, how I feel, how I react and how I deal with things is because maybe, just maybe I can bring a little sparkle of hope in the life of people who don't have that chance. I'm not ashamed of who I am, of my disabilities and I'm not ashamed anymore over people's lack of understanding. It's a them issue. So I don't mind sharing. If anything, it gives a sense, a reason to be to my suffering. It's human after all, to give a meaning to your pain, to justify it.

But it's not the only reason I'm writing this. First, also because I wanted people to understand why MCU Sam is this important and intimate to me. Second, because I wanted people to understand the strength and the importance of representation. Because when you're not allowed to voice yourself, then all you have left are fictional voices.

Through MCU Sam, through the way I draw him, write him, through the thing he does in both movies, I can express everything I'm not allowed to express, explore myself, feel seen. I really hope we see him again, let it be to set the World on fire or to have a second chance.

But there's another reason to that.

When I went out the movie during my first watch, damn, I felt nothing. I went home around 11 pm, went to sleep and I felt nothing. It scared me, honestly, the idea that I would dislike my fav character portrayed by my fav actor, but it can happen.

The day after, my fiance brought me to a place that used to scare the shit out of me but we spent the day here. I felt sick but it didn't made me feel scared or anxious like I used to. I had fun.

We spent the morning playing video games at an arcade place, then we went to a Dinner (these kind of things are pretty uncommon in France). The Dinner was in front of a theater so I kept seeing the ad for Cap 4 and the more I saw it, the more I realized "damn, how I loved it" and how I wanted to see it a second time (thanks to my siblings I did lol).

And when we were heading home, all of sudden I felt. I felt about the weight of my life, about these 16 years of emprisonnement I went through, about this day I spent with my fiance but also my previous night at a theater and I start crying a lot under my sunglasses. Of course it was impossible to hide, my sobs were way too loud. And when my fiance asked what's wrong as he was ready to pull off (he was driving lol), the only thing I could articulate was "I'm just so happy I'm here and alive". I wasn't happy because it felt normal or because it felt like my previous life, I was happy because I was loving my current life as it is. With all the limits, with all the pain, with everything I went through, I was just happy to be here, with this life.

It took quite some time to process all that, lots of reason to that. Because of everything I mentionned here of course, but also because seeing Sam on big screen, seeing him so like me, seeing Tim Blake Nelson portraying my boy the way he did, it makes me feel good to a level you cannot comprehend. It literally healed my PTSD in fact, which sounds incredibly fucking crazy and I'm sure a lot of you think I'm exagerating. But think of it as the last little piece I needed to build myself back. Of course they didn't heal me all by themself, but they were that very last little push I needed. Most of the work was done by me and people close to me, but I needed one last little push. It's like building a whole swimming pool for years and then standing in front of it because you're too scared to jump in and enjoy the work you did with all the people you love. Tim's portrayal of Sam was this lil' push I needed to get in and enjoy it. Because all this time I learnt to survive for people I love and fight for them, but I never learnt to do things for myself, to appreciate what I have. I learnt that part through Sam and Tim.

I know it's impossible to reach Tim (I know because I tried haha), but given the unfair amount of hate everything MCU get nowaday, I would have loved to tell him that what he did was worth it, because it made me live. It saved me. And I hope this idea can be somewhat comforting. Haters aren't a majority, they're simply louder than others. Because being hateful isn't a normal thing, so it's very human to notice and focus on it. You don't praise people for being respectful, you don't pay attention to that.

In a world where everything is motivated by hatred, the only way to silence hate is to love louder than it, to be compassionate. So I'll keep screaming my love and passion for everything I like, as silly as it is.

For someone who is born in hate, live in hate and will die in hate, it's important to be able to express more than anger and bitterness and to be grateful, even if it's about a celebrity portraying a character you like.

That's why I felt the need to write this down. I cannot get rid of my hate, of my pain and I cannot get my life back. But I can make the best out of what's left and what I got out of this.

There's a reason I love drawing MCU Sam in very normal everyday life situations, because that's what I've been doing lately, normal things. Going back to theaters, watching movies, seeing people I like, doing activities, spending time with people I love, playing games, reading books, writing. Living. And because I see myself in him, it's important to me that I give him a little bit of happiness through the normality of an everyday life.

It's not just a love letter to Sam, to MCU Sam or to Tim, it's a love letter to myself. Live, experience, feel, learn. With this new life of yours.

It's probably why I love drawing MCU Sam crying so so much too, to the point of tattooing it on my skin. Because through him I can finally shed the tears that have been stuck in my heart and finally expressing my pain. The only way to heal is to stop healing. I'll make a better post about that eventually, but until then just remember that.

It will never be perfect, it will never be painless. You will never stop feeling anger and hate and ressent for every injustices in this world. But it doesn't mean you can't learn to live and to feel love again.

I also hope this post can reasonate with the few of you who feel forsaken, alone and who feel guilt about their condition and their ressent.

We are all alone together.