What being a disabled millennial like

I guess it’s been exactly a year since I started blogging. I started writing with the intention of gaining some perspective in my life and it totally worked. I’m right and everyone is terrible.

At the start of the year I had my trusty neuromuscular disease which makes it impossible for me to physically care for myself, my mother’s Alzheimer’s had gotten to the point where she could no longer physically or mentally care for herself, auntie had been in my life for a few years helping me try to get her medical help and deal with the endless paperwork x2 that comes with disability. She was the only family member that even pretended to make an effort in my life, but the stress of it was obviously getting to her.

And I was losing my god damn mind so I started this blog.

The major thing I realized is something I already thought I knew; being disabled is like being in a completely different reality that normal people only have some vague sense of, like gravity but really can’t comprehend. What I specifically learned throughout this year, though, is that they willfully remain ignorant because of their narcissism.

That sounds incredibly rude but in some cases I mean it in the nicest way. Some able-bodied people simply never learned that TV isn’t real. When they hear anything about the reality of living a disabled life and how it has nothing to do with your health but everything to do with violent bigotry they try to convince you that any bad situation is an outlier. ABs refuse to acknowledge disability to avoid feeling guilty; those people legitimately don’t know how common and easy it is to step over a dying body while complaining about the smell.

There are some people who genuinely don’t know better and so they are eager to help, impatient for the praise. It’ll get them praise, but they can’t handle it for long.
For my Mormon uncle it was the very minute that I called him to let him know that his sister was sick that he became overwhelmed and he insisted we both be sent to homes. He had no idea why I was so opposed to the suggestion because it wasn’t as if anyone would want to rape me or anything.

I know I heard that clearly because he was screaming it through the telephone.

Auntie pressured me into putting mom into a home and then to make sure I can make no decisions she told them I was mentally ill and all around general liar so I wasn’t allowed to have contact with my mother. After mom got kicked out after week for unruly behavior I found out from the carefully worded discharge papers that she had been raped in the shower. Whether Auntie knew that are not I don’t know but it was the last time I ever saw her.

Up until then, though, Auntie worked incredibly hard to help us but the weight of sainthood became too much. There were multiple times where she would throw my medical cards at me from the end of my bed while yelling at me for not knowing how to love correctly. To her credit, she wasn’t completely wrong.

She said I was being condescending when I constantly apologized for being a burden and then I halted every conversation with the incessant need to thank everyone for just being there. True. It took me being forced into a role-play game before I really understood that.

I like helping people out. I like seeing people relieved and happy when I can unexpectedly provide a solution. I like feeling that I can have at least a slight impact on other people that isn’t horrible.

What I don’t like is people making it weird by being awkward, thanking and apologizing to me every few seconds. When they insist on thanking me it hurts my feelings because it seems like they’re surprised I would do something nice. When people won’t stop thanking me it’s alienating. When someone puts you on a pedestal is not only objectifying but lonely because you’re no longer equal.

What I still don’t understand is what the hell I’m supposed to do.

When I go somewhere I have to get their permission to go. When I do something I have to get their permission to do it. When I eat I have to have proven that I’m worth the waste and produce.

How can I not thank them?

How can I take the risk of not thanking them?

It used to infuriate me and people told me I had no idea what the “real world” was like when the only world they know is Pollyanna’s but now I can’t help but agree. In the real world you don’t have to pretend not to know your friends in public.  In the real world you go to the police for help instead of avoiding them. In the real world you don’t apologize to other people when they hit you. In the real world strangers don’t tell you that your God’s punishment on humanity. In the real world you check the mailbox for bills, paperwork to fill out for permission to live for another month.

In the real world a real person wouldn’t have their healthcare taken away for having an extra $100 in the bank, a real person would be allowed to have more than $2,000. Especially if everything was as expensive in the real world as it is here.

Even after a year finally coming to terms with never getting the promotion to human I’m happier than I’ve ever been in my life.

Although I have to fight for it every day I’m still living in my home, unlike my ancestors. Even if I’m not allowed to own it.

Also unlike my ancestors I’m trapped inside my bedroom but I have the technology to talk to people all over the world. Not people from the real world but people like myself who are going through the same things that I am. I never know how long I have them but thanks to the sheer number of us I’m never alone. More and more of them grow exhausted and are forced to commit suicide but it’s a less lonely than it would’ve been even just over a decade ago.

We have the ability to communicate and create things as long as it’s not in exchange for currency and because of that and realizing that there are people in the real world who do care about what’s going on in the outskirts of The Real World™; AB and NT people my age, millennial’s who have helped me survive with much more dignity than any other American generation has before them.

I’ve proofread homework in exchange for dinner. I’ve written essays on Deadpool in exchange for toilet paper. I’ve reviewed movies for hair dye.

I have no hope for society itself but I have hope for humanity now that I know that there are people unlike my family but things haven’t changed enough for me to even have a conclusion to this post. Still, I have the ability to make this post and as pathetic as it is I’m thankful for that.

David is disabled

David was discovered trapped in a concrete box and once he escaped he was transported forward in time where Bishop resided. It was a dystopian future and David was immediately captured and put into slavery.

Before we begin let me preemptively respond to your complaint: I talk about neurological divergence because, guess what? Some cripples are mentally ill, Becky.

FX aired a new show called Legion this year based off of the character Legion from X-Men. The show exists in the XMCU which means he lives on Earth-10005 or Earth-TRN414 (it involves time travel and everyone has their own opinion) so it’s the “real world” except mutants exist and therefore so do the X-Men. The MCU with the Avengers and such have absolutely no relation outside Easter egg jokes.

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I’m going to give you a summary of Legion’s canonical history that the show Legion was based off of. Legion from FX diverts from the source canon but constantly makes callbacks to it which takes it from and incomprehensible show to just pretty confusing.

I don’t feel like I’m selling this as I intended… The show is the most amazing thing ever made and despite my affinity for comic David I actually like it more than the comics. That’s a big deal. If I had said that in certain circles I would be killed on sight.

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Legion is a Jewish kid named David Haller and the the son of the most iconic disabled superhero, Charles Xavier. David Haller was never more than part of a secondary cast until a few years ago when Simon Spurrier took over X-Men Legacy and made David the star.

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Legion’s real name is David Charles Haller, a Jewish man from Haifa Israel who canonically can’t grow his hair into anything but a gigantic mohawk, and he is an omega level mutant which means he has practically God–like powers.

His father is Charles Xavier, Proffessor X himself, but his mother, Gabrielle Haller, kept that a secret for a very long time. Gabrielle met Charles at a hospital where he was using his psychic abilities to alleviate trauma of the Holocaust survivors. They had a short fling in which David was conceived but Gabrielle, suspicious of his psychic abilities, kept David a secret and David’s godfather, Daniel Shomron, stepped in to help raise him.

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When Gabrielle entered the Israeli Diplomatic Service she and her family were attacked by a Palestinian terrorist cell. Gabrielle and David survived, but Daniel used his body to shield David from the bullets and was killed. The trauma activated David’s mutant genes early (he was 10 years old and they don’t usually manifest until puberty) and as his psychic abilities turned on he killed all of the terrorists. David went comatose and absorbed the psyche of one of the terrorists who took control of his body, still comatose, and fought the growing alter egos forming in David’s Mindscape due to his DID

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Gabrielle turned to the renowned geneticist Moira MacTaggert, coincidentally another one of Charles Xavier’s ex girlfriends, who insisted Charles come to treat him personally. Charles found that David had very similar mutant abilities to his own, only much stronger, then found out he was his father.

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By joining the war in David’s Mindscape Charles was able to wake David back up and most of the alter egos were destroyed but they continued to develop unchecked.

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Legion/David gained and lost control of himself many times, hurting many people even murdering Destiny, Mystique’s wife, when she tried to intervene with him and he saw through her precognitive abilities how devastating his future would become.

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David decided he would realize his father’s dream of mutants and humans coexisting and to do that he traveled back in time to his own conception to kill Magneto who Charles was also with at the time.

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Time travel shenanigans ensue and Bishop ends it by showing David what future he is actually creating. David was ashamed and in the reconstructed timeline he was thought to be dead, his mother even questioned his conception.

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Years later David was discovered trapped in a concrete box and once he escaped he was transported forward in time where Bishop resided. It was a dystopian future and David was immediately captured and put into slavery. He got out of it somehow, these sort of things happen quite a bit to him. The X-Men finally took him in and Karma and Magik began working with him to get better but he still had major reality twisting hiccups while he was trying to be good but his ever increasing alter egos keep taking over. Meanwhile his relationship with his father continued to be estranged; Charles seemed to think he was too dangerous unless he wanted to utilize his powers or alternate personalities. Magick  is the only one that seems to consistently try to help him but sometimes with ulterior motives

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Now for the really good part. X-Men Legacy: Legion written by Simon Spurrier.

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Up until this point Legion was very inconsistently written because he had been a very minor character but in Spurrier’s Legion series the loose ends of the story are tightened and we actually see David as David. Before he only momentarily surfaced to find that he had caused a disaster and everyone was debating on whether or not he should be put down.

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Charles had sent David to a secluded place for rehabilitation and never came back, as is his pattern with David. After the event of Avengers vs X-Men where Charles dies David finally had to face the fact that his father was never going to come for him, he was never going to publicly acknowledge him, and he never planned to let David return to the real world.

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When he felt his father pass away David’s power surged and he wiped out the community he was living in, before his Guru died he told David to wait for the X-Men to come to relocate him again but David left, deciding he finally needed to change the pattern of his life, get a grip on himself, and find a way to see his father’s dream of coexistence come true. He does this by making himself somewhat of an invisible mercenary, trying to save mutants the X-Men hadn’t gotten.

David turns his Mindscape into a prison to keep all of the alter egos contained which worked relatively well, all things considered

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Blindfold, a mutant nearly as powerful and ostracized as he is, seems to have an instinctual connection to him.

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imageBlindfold is Ruth Aldine, and she takes after her legendary grandmother Destiny. The Destiny that David accidentally murdered years before. Ruth has a very traumatic history; she was powerful she was born with her mutant abilities already developing and she was born blind, specifically she was born with no eyes at all. When Ruth’s father left her brother Luca blamed her because she was a mutant and tried to kill her but accidentally killed their mother instead. Luca joins a radical anti-mutant group and ends up fracturing her mind which gives her schizophrenia and a very prominent speech impediment

She takes refuge in the X-Men mansion/school but the way she speaks, looks, and is unable to restrain herself from reading everyone’s minds makes her a social outcast

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The X-Men eventually track David down with the help of Ruth’s powers

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And David isn’t having it

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The X-Men try to keep Ruth from him but through their mysterious connection Ruth easily enters David’s Mindscape where she is partially able to speak normally, depending on her mood

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She is able to get through to him until one of his altars breaks out and attacks her, knocking her out.

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David lets the X-Men take the mutant children he had found and secretly follows them back to watch over Ruth who is now comatose. He enters her subconscious and sees her whole life, specifically her bullies

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He brings her back to consciousness and they meet briefly as he escapes

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She keeps track of him by following him in her astral body, not understanding quite how powerful he is and that he always knows where she is

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He tracks down the radical group her brother had joined and sets out to destroy them and her brother. She “reveals” herself to him telling him to knock it the fuck off.

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She makes him promise not to hurt them so he sort of complies by messing with their minds so they will no longer be a threat. David continues on his mission to save mutants and impress Ruth and she continues to be his conscious while they secretly meet on the astral plane

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As this is all going on David is trying to deal with what looks like his father’s consciousness personified in his Mindscape jail. The entity does claim to be Charles Xavier and it continually terrorizes all of the alter egos and mocks David, among other things…

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The golden pervert, David and Ruth’s inherent connection, and because it’s X-Men everything is leading to a future dystopia where David loses control again but this time destroys everything. Ruth will have to kill him because she’s the only one strong enough and deeply embedded in him to destroy all of the alternate personalities along with David

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but David insists that he can change fate. He’s powerful enough and with Ruth as his one that gives him “purpose” he’s pretty sure he can pull it off

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But he’s going to do it by changing the will of people that will influence the dystopian future. Ruth argues that it’s immoral, especially to punish people for things they haven’t done yet. It was against Charles Xavier’s dream to force people into anything (although he often did it, unbeknownst to them) but David isn’t empathetic, in fact he already took out Aarkus before asking her permission. Ruth was mad but soon thereafter she sought him out again by using Cerebra

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But he had already made a deal with the golden pervert in his brain that in exchange for checking on the future again the pervert could have controlled his body for one minute. (Each of David’s altars personify one of his thousands of powers.) David sees the apocalyptic future he creates and runs off to an ideological facility that “cure” mutants by giving them medication that will give them brain damage, blocking their ability to use their powers. Ruth goes to her peers and the X-Men asking for help to get David out of this but it takes a lot of convincing

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David he realizes that although the patients seem to be well their minds are shattered but another apparition of his father appears, reminding him of his failures and making him feel guilty for denying his heritage but David blocks amount and decides to go through with the cure anyway

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The operator of the facility reveals himself to be the Red Skull and the one that caused him to see his father because he had implanted Charles Xavier’s brain into himself, hoping the shame of giving up would make David want to fight but David still doesn’t want to

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He is given the medication and they air his conversion live on TV

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Ruth appears with X-Men she had convinced to come help her save him which is what the Red Skull had apparently been aiming for and the X-Men are live on TV appearing suddenly in what appears to be a peaceful facility to stop a man who admits to being a monster from “rehabilitation” but David had planned on him planning this and uses that moment to bring in a young mutant he had saved earlier. The boy’s ability was that everyone immediately believes anything he says, practically giving him the ability to change reality. Through live TV he convinced everyone watching that the mutants weren’t their enemy. He tries to evoke empathy but that doesn’t work as well

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Of course a battle with Red Skull ensues which is when the golden pervert who looks like Charles Xavier comes to take his one minute with complete control of David’s body. He wants Xavier’s brain for himself.

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Ruth fights to get the minute to run out so David can take control of his body again and then we have this really funny moment

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Read X-Men Legacy: Legion Vol. 1: Prodigal

Diary: I hate you all

I’m not an angry person. I’m the type of person who you would assume has a bad temper because I’m naturally argumentative but anger is too physically exhausting for me. AB people rely on anger all the time, easily because of their entitlement of course, but also because they can peace out of any situation.

They can walk away. They can leave the room. They can leave the building. They can hit people back. They get the benefit of doubt. I can’t leave; not on any level. I literally can’t leave the house on my own and going into another room only makes it worse when you are disabled. Everyone is entitled to speak for you and make decisions for you even if they aren’t legally supposed to. When I go to the ER I tell the staff I have MD and then I have to find at least two AB people to ask the nursing staff to change what they had written down, MS, to my actual diagnosis of MD. No one believes me because I sit in a wheelchair so no matter how emphatically I say “not MS, I have MD” I still can’t be trusted to decipher between the two of them.

Auntie L has been “done with” my mom and I for a while now and yet she is the only person medical and social professionals seem willing to talk to. Despite going into Social Security and getting my competency the first thing people want to know is why are they talking to me and not an AB who’s advocating for me?

Assholes aside, like my social worker who has refused to speak to me at all, everyone just assumes disabled people are the least capable of all people. Even about disability. Especially about our own disabilities.

AB people are angry on my behalf when I tell them things that I’m going through which is validating I guess but they then insist I should do something, that I should fight for my humanity. They don’t want to help or anything, but I should totally do that.

They don’t understand when I tell them this is my life and this is the way things work; this is the way things work for all disabled people and it’s much better than it ever has been for us which doesn’t say a lot. I refuse to be a vigilante and then ABs get mad at me. I need to deal with the 24 hour job the state gives me for being disabled as well as having health problems and manage being a member of the most oppressed group in the history of humanity. I don’t have a lot of time on my hands.

This is too much a part of my everyday life that it could never really make me angry but I’m becoming more and more impatient, especially now that I have to take care of my mother who has become disabled. I suppose it’s because I have had to speak on her behalf lately and I can sympathize with her situation so when people act the way they have my entire life is not really about me anymore so I feel guilty for letting it slide.

And then I talked to other young disabled people who are going through all of the same things I went through and nothing is getting better, some things are even getting worse. I suppose the real source of my anger is my own fault because I’m having a hard time getting past the guilt of sheltering NTABs my whole life. If I had demanded respect or insisted people listen to what I had to say maybe things wouldn’t have to be this way anymore. I feel complicit in stripping my peers of their humanity. I can’t imagine there is a worse type of guilt but as someone who doesn’t feel guilty often even a little bit of this shit is too much.

I did it all to survive but I never much cared about surviving so it’s not a good excuse. I wasn’t supposed to live until 30 so whenever things would get bad I could tell myself “it’s not going to last much longer” but now I hit 30 and I don’t have an exact year to shoot for anymore, it just depends on how healthy I can remain and my health depends on being stress-free so even though I still tell myself it’s all going to be over soon I also did that terrible thing where I became an adult and realized even passive behaviors have grave consequences and it’s usually the burden of the following generation.

I’m melancholy because this week I have to interview a caretaker, I have to take a daylong appointment at the bank, another daylong appointment Social Security, I need to find a way to make money to pay off last month bills since my SSI got dropped to $3 after I went in to get my competency. I have to find a way to barter things in such a way that my mom and I can survive this month.

Now auntie L texted my CT Zari telling her she was going to pick up my mother sometime this week to take her to lunch. She didn’t know exactly when or what day because she’s very busy and won’t know until the mornings what her schedule will be.

Well guess the fuck what?

I never know if on a given day if I’ll be able to get out of bed or eat. I never know who exactly is going to be here and when because even people coming here for a paycheck come on their own time. I never complain but it’s been explained to me many times that the pay isn’t great and despite this being a job I need to be thankful for everything anyone does for me because what would I do without them?

They’re right, I can’t do anything without them. They make sure of that.

I never know on any given day if I’ll be okay or if I’ll be in so much pain I start to disassociate and what causes me pain and illness does not factor into any decision because it’s not important to anyone but myself.

Auntie made it clear she does not care about my well-being. She thought it was absurd when I asked her not to let herself into my house and wake me up to scold me about how unlovable I am. I was so incredibly ill after that whole thing I was starting to hope I was actually just dying and now I’m starting to feel that way again.

I’m supposed to overcome my disability to make my disability easier to manage for people who I don’t even want in my life. I have to overcome any physical sensation, any emotional burden, any independent thought.

I can’t do this anymore. I just can’t.

I promised not to kill myself if I found a way to manage things and this is no longer a way to manage things. It may work for everyone but me but at this point I realize that not being selfish is the most selfish thing I can do.

I’m not all suffering and I’m not selfless.

I will not live like this any longer.

I’m already in pain, I’m already hungry, I’ve never had any agency, what do I have to be scared of?