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.

Uninspirational Inspiration

All disabled people have their abilities belittled and marginalized, which is why depression and suicide is so prevalent in our community. Everyone feels worthless to some degree; whether in their school life, working life, family life, love life, etc.

ABs interpret our frustration and anger as narcissism and demean us for being bitter. They intentionally keep our issues invisible by claiming that none of them would ever be so cruel as to force us out of society as they do. They use us as worst-case scenarios to encourage themselves to reach goals and to encourage society to be more tolerant of them simply for not being us.

Any civil rights movement, whether it be about gender or sex or ethnicity or race, actively distance themselves from those of us who would also be included in those civil rights movements if they considered us human. They pretend to sympathize out of one side of their mouths and literally say “we don’t deserve this, we aren’t disabled” out of the other side.

They gain “rights” by upholding the status quo and volunteering to be gatekeepers; framing themselves as benevolent gatekeepers. They say they feel terrible about segregation but then build their own communities inaccessible from the ground up.

We are told to overcome who and what we are as if we’re something to be ashamed of. To overcome a society fundamentally built on eugenics. To overcome the very people telling us to overcome.

If you have low self-esteem, it’s no wonder.

Nothing you do can be enough. No crippled athlete is ever athletic enough to stop being crippled. No inspirational cripple is inspirational enough to be offered equality.

If you have dreams or goals that you hope they will recognize you should give up immediately.

You can’t win. At least not anything that doesn’t have “special” in front of it.

You live in a world where abortion is justified based on your existence, where an equal education is impossible and a “special” one has to be fought for. In your world, only half of us that make it to high school are able to graduate. Of the sparse a few who get into college, only half reach that graduation.

You live in a world where it’s statistically impossible for you to escape abuse and yet all the abuse in the world is blamed on you. A world in which people call “time’s up” on unconsensual sex while every day those that rape us go unreported or are simply charged with bestiality.

You live in a world where your family and caretakers can murder you and not be held accountable because you are an undue burden.

They are in charge of your health, finances, living arrangements, and every other facet of your life because they made it illegal for you to do it yourself. And then they call you lazy.

They celebrate the end of segregation while you are still being segregated.

They celebrate their prosperity and wealth while you have to report everything you own that’s worth more than $500 with a full understanding that those items will be seen as too lavish for you to deserve healthcare.

They celebrate marriage equality while getting married for you also means losing healthcare.

You live with all of this and yet you are still living.

A lot of us give up and there aren’t a lot of good reasons not to; whatever amount of time we can last, we are doing far more than paying our dues. Committing suicide does not mean our peers gave up and being suicidal ourselves does not mean we have failed in some way. Sometimes the only thing we can control is our death.

But for now, you are alive, and why does that not amaze you?

Every loved one or complete stranger that told you that they would’ve killed themselves if they were you are absolutely correct.

They would kill themselves right now if f they understood the reality of disability and how suddenly they might have to face it, as 1 in 5 people in America are disabled.

And honestly, if they really did understand what they were doing they would stop. Even Nazis enjoy art and philosophy and technology; if they were to recognize our “lazy” accomplishments they wouldn’t throw us under the bus and into gas chambers because it would mean they would have to lose all of that.  They are too entitled to be able to make that sacrifice.

They would never be able to exchange basic human rights for their very lives and yet you do it every day. Whether it’s to spite them are not, you take on centuries of discrimination completely incomprehensible to them. You are facing their best attempts to euthanize us with “cures.”

If all you did today was wake up, you did far more than any of them have ever done in their lives.

You don’t need their approval.

You don’t need their respect.

You may need it in all material aspects of your life but you don’t need it for your self worth.

They are weak, as they have always been weak. They will die, as they always have died. They remain the same while you change the world with your slave labor, your pain and suffering while testing medicine and technology, and your performance in the freak shows they try to imitate so badly.

Me Before You does not represent you. The Shape Of Water does not represent you. A miraculously cured Batgirl does not represent you.

They can’t represent you because they’ve never actually looked at you.

Don’t confuse their failures as your own.

Unrest, a visual handbook for the loved ones of disabled people

The award-winning documentary Unrest by Jennifer Brea was released on Netflix this week, introducing chronic illness to the larger public. Brea is described as a modern-day Odysseus as the movie documents very real and metaphorical journey to discover who and what she is as a disabled woman in her 20s with an invisible disability.

The condition documented in this movie is known as ED or simply chronic fatigue syndrome. Conveniently, I also have chronic fatigue so I won’t second-guess my own feedback. I was born disabled with a neuromuscular disease but in my early 20s I developed IBS and my chronic fatigue became serious. My neuromuscular disease is a terminal illness and I’ve used a wheelchair my entire life but if I had to choose either my terminal illness or my invisible disabilities I would choose my terminal illness which ABs  (able-bodied people) can’t understand. Living with this can be so horrible that you don’t mind dying in the hardest parts aren’t physical symptoms, it’s the isolation, rejection, and discrimination.

The movie impressed me with not only its accuracy but it’s inclusion of a variety of disabled people telling their own stories for once. That being said, I don’t believe that ABs will understand this movie from an intellectual point of view; at least not until they watch it enough times to put away their emotional point of view. Visually, though, the emotional impact is impossible not to empathize with. I believe that healthy people will see and comprehend how quickly someone with a chronic illness can be sick (have a flareup) one minute but then suddenly suddenly appear normal in the next; I believe they can comprehend that other times you haven’t been normal in a long long time and may well never again.

As simple as this concept sounds it’s one of the biggest and most reoccurring issues in the chronic illness community. Not even doctors get this simple concept.

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“One has to be careful. If you say too little, they can help you. If you say too much they think you’re a mental patient.” – Edgar, Brea’s husband

The movie begins with a routine trip to the ER.

When you go to a hospital you know that no one there will understand what is happening to your body or how you feel. The type of pain that comes with chronic illness, that comes from literal exhaustion from loss of spoons, is not something they’ve ever experienced. Trying to explain it is ironically like that old saying “you can’t teach a fish what it’s like to live on land.” #Mermaidanalogy

This disconnect means that our tests won’t be accurate. 1 on the pain scale of chronic illness is a 10 for ABs. Symptoms you have are often symptoms general medical staff has never heard of in a proper context. You have to be careful about everything you say and do, constantly assessing every pro and con. If you can’t bridge the language barrier going to the ER will only make it far worse. It wouldn’t be so hard if medical professionals knew about it or were even interested in learning.

When people can’t see that you’re sick so you have to be the healthiest sick person you possibly can because at times it feels like no one even knows what species you are which is why a lot of times YD (young disabled people) will opt not to go to the hospital at all; one meme in the community is comparing what has to happen before we will go versus ABs. ABs go to the ER because of gas pains.

This isn’t to say that people in the medical field don’t know that we are outliers to some extent. When my CT (caretaker) got high and turned on the stove resulting in my getting carbon monoxide poisoning although I insisted that no one call an ambulance an AB friend was too afraid to respect my wishes. It may have resulted in a good learning experience because when the paramedics came and I explained that I’m so disabled that it might be better just not to do anything and they agreed. She was shocked at their apathy.

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This was like watching an out of body experience. It’s a place I’ve been before, thank God not often, but I know it well. Having never seen it from the outside watching this horrified me, but it struck me as odd that I wasn’t horrified at her safety like I do when I see ABs in severe pain and unrest. It felt horrifying because I was remembering my own horror from flareups.

I really want to know what it looks like from an AB’s perspective. I really want to understand where my mom was coming from when she told me to just shut the fuck up or when the nurses refused to stop even for a second when they are causing this.

In this respect there is a lot in this movie that I can learn from.

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“but I just feel like, I’m like robbing you and I’m hurting you and I…” – Brea to her husband

Brea’s relationship with her husband is not familiar and it certainly isn’t common. The situation was obviously incredibly hard for him and after certain amount of time people reach their limit. For friends it’s a month to a year, for family it’s at day one or a few years. When your family runs out of patients you get sent to a home, they murder you, which is ruled as a mercy killing, or they stop doing anything at all, and you become a ghost in your own home. In the rare occasion that your family doesn’t demonize you or objectify you as a fallen angel there is still abuse, albeit good intentioned.

I don’t think Omar is more empathetic or has more love than the average man but he’s not an average man. Besides being intelligent and his accounting for his own ignorance he is a minority and, anecdotally, the more marginalized person, the more likely they are to understand the extremes of bigotry.

Still, what the hell? Even my AB friends thought he was Prince Charming.

But he was a part of Brea’s life back before she got sick. This makes a huge difference because loyalty is real. People that have the ability to stay in a disabled love one’s life may not know it’s possible and most don’t have the loyalty to try. You still have an expiration date, but in the worst times you may only have to deal with good intentioned ableism.

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“You know, and honestly, there are a lot of days when I just feel like I’m doing a good job just by just holding it together and not killing myself.” – Brea

This is also something just comes with a disability. It’s what has helped to alienate disabled people even within their own activist communities. You’re not supposed want to die. People get upset or angry with you when you don’t respond to their alarm by anything other than gratefulness. You can’t tell people your suicidal thoughts are not a cry for help and you most certainly cannot support someone else when they make the decision to commit suicide.

Almost a decade ago, when Cripple Punk was forming, I had a tumblr about disability. When I abruptly closed it people thought it was from the constant hate mail and death threats but those never bothered me; I just couldn’t find a way to explain to my followers why my peers were suddenly disappearing or why I would have ever told any of them that I supported their decision.

It’s hard to explain to someone what it’s like to be told by a friend that they want to kill themselves, or at least not what it’s like to know that they are being rational about it. It’s not a teen drama type of suicidal tendencies, they don’t have an eb and flow after certain point. Whether you’re happy or you’re sad suicide is always in the back of your mind and most of the time you pull it out as your last coping mechanism: you can stop this at any time. It’s empowering to know that in a world where your body is literally made to be inaccessible from buildings to healthcare you have the kill switch, you are still in control.

If you are alive, it’s not because of anyone but you. Only you can take the credit. Everyone else doesn’t know that this is currency to you so they won’t try to take it from you.

It’s hard to hear your friend tell you they’ve decided to kill themselves and you’re thousands of miles away from them, but even if you were sitting right next to each other there is nothing you can do to help. You want to give your friends the honor you treasure yourself so you tell them that it’s their decision and you will support them no matter what they decide. And you do.

It’s hard to admit how proud you are of them for making a decision even after they’ve killed themselves. How relieved you are that they’ve gotten away from the abuse. How envious you are that they found their breaking point and you still have no idea where yours is.

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“Sickness doesn’t terrify me and death doesn’t terrify me. What terrifies me is that you can disappear because someone’s telling the wrong story about you. I feel like that’s what’s happened to all of us for living this. And I remember thinking, there’s no one coming to look for me because no one even knows I went missing.” – Brea

This lack of visibility and lack of ability to protest in ways people acknowledge is the worst part of any disability. That, in and of itself, is disability. Disabled from society; literally.

This is what draws most people to suicide, not physical or mental symptoms. Again, it is the isolation, rejection, and discrimination.

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“Doctors want to know what to do, but it’s not in textbooks of medicine… So they have to go the same places you will go in Google it.” – Dr. Nancy Kilmas

If there’s any part of this movie I especially hope ABs watching will listen to and not just watch as sympathy porn it’s this quote. If they can understand how literal this is and how unconcerned doctors are with their own behavior we could move toward gaining civil rights instead of arguing our right to have them at all. Maybe ABs can empathize with the normalcy of this. It’s not even web MD, it’s a broad search to find anything anywhere. The nature of people’s existence is as common knowledge as any pop culture trivia they’ve googled out of boredom.

You know you’re fucked when your doctor is excited to find your condition on Wikipedia.

I’m incredibly grateful for this movie because now that it’s available to the greater public we can stop needing to go through disability 101 before every conversation. This doesn’t hardly cover all of the issues involved in disability but it will save a lot of time, which is nice when you’re dying.

Diary: IHSS should just drop the I and H

When I first got that call from Nice Guy everyone was so excited but I kept telling them not to get their hopes up and lookie lookie here, I was right. It wasn’t just pessimism. But pessimism had a lot to do with it. 

In our last episode I said I was done. Well, I’m even more doner now.

suicide-gif_zpsgmt7pcggAfter all this time it seems that auntie and I finally have something in common; we’re both done. But our “done”s are pretty different.

Remember Auntie said she was going to take mom to lunch? Of course you don’t. No one is reading this shit. Well guess what, when I asked her what time she went on radio silence.

Then I tried to explain the spoon thing again despite the fact I know it throws her into a rage. She literally disowned me the first and only time I gave it a subtle shot.

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Did that sound condescending?

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I really tried my hardest. This is the first text I sent her without running it by anyone to proofread for anything that could be construed as insulting. I just went with how I write formal emails. Unless she wants me to speak in AAVE I have no other options.tumblr_n66se03AA91rc7zl1o1_400_zpsuoig0sqk

And it would just be my luck that she would trick me into something racist like that.

She recently texted me asking for the infamous door alarm.

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That, apparently, was the wrong thing to say because then no one heard from her and like three days later her daughter, whose name I censored first, showed up one afternoon for it but said she couldn’t stay because her kids were in the car. It really made mom depressed because she was so excited to see her. It’s heart wrenching.

So, I guess when auntie said that she was done what she meant was done sticking the knife in but not twisting it.

tumblr_oun3tfW3y81rohg16o5_400_zpsasyoupfcI’m fucking done.

Like I said, I don’t think about my auntie unless someone brings her up but that void was quickly filled with IHSS.

And now I’m done with them.

I still have not heard from my caseworker/social worker. Let’s call her Amy Hoe. The one time she talked to me all she did was whine about how hard she used to work before she “got burned too many times.”tumblr_oqwrniL4sk1u940dvo9_500_zpsiijrkdzq

She did call once but I was here alone with mom and couldn’t get the phone. I then left multiple messages, all sugary and sweet like last time, apologizing for missing the call and I left my phone number, my address, and my email address. Each week. I left messages in every department, trying to find someone who will least call me back about how to get more hours my caretakers. No one called.

It’s been a month.

giphy11 days ago someone from payroll accidentally picked up and told me to call Amy Hoe. I know better than to talk shit so I told her that Amy Hoe said she would be “out on the field” for three months. She insisted and I hesitantly, and awkwardly, said, “um she said she was going to be busy and I haven’t gotten her to call me back so I was wondering who I can speak to instead in the time being?” No dice. “I really do think she was serious about being out of contact. She seemed pretty stressed. I know it’s hard; social work is horrible. She just said she was little burnt out by going out of her way for people.”

Dice on fire.

tumblr_inline_o5n7o8TrGT1t0ihy9_500_zpspfgwuqqyHow is that insulting? I was obviously choosing my words carefully (badly) but the chick isn’t responsible for going out of her way so long as she acknowledges that it was her choice. Bad things always happen to good people.

I’m not dumb, I know this sounded insulting but she was trying to hang up and this is the first I had spoken to anyone in a month and all that happened then was a promise to call me back.

tumblr_os57kgeMbh1rrkahjo4_540_zpsvogskbskApparently they are BFF because she immediately shouted, “she would never say something like that!”

I said, “well she did.” She tried to bite her tongue and said “that doesn’t sound like something she’d say.” And immediately transferred me to someone’s voicemail.

Idea for a movie: IHSS is actually a secret government agency that gas lights the most impoverished citizens as a way for the Illuminati to make turn America into inspirational porn to broadcast to the aliens.

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I hired that caretaker I was going to interview. Let’s call her Princess. She’s in her mid-20s and she acts like it. Savage rightfully pointed out that she was both unaware and reckless with her white privilege by saying, “she’s white.” tumblr_nxz6fnnsYq1r83d7lo10_540_zpsag45xhh5

She really is a nice girl but she actually told me she misses high school.

What do you say to that?

All I could come up with at the time was, “ew.”

So what did that payroll lady do? She connected me to some guy’s office whom, she made sure to point out, wasn’t there so I would have to leave a message. It turned out to be a supervisor who called me back pretty quickly and was very apologetic. He seemed nice but I’m smart enough not to trust anyone. Ever. About anything. Ever again. He helpfully told me things that I should ask Amy Hoe about when she does a home visit, which would be soon or he would do it himself or… Oh, Amy Hoe never came out and never spoke to me other than that one phone call in and entire year? Then he looked at my file to see who had come out and it was that guy.

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That guy, that superduper supervisor everyone at IHSS stands on their desks and recites O Captain! my Captain! to was the one that came out. The one that told me that IHSS would give me back pay and lost me thousands of dollars which, of course, is on one of my maxed out credit cards. He laughingly suggested that that guy should be the one to come out again.

I emphatically asked him not to reprimand Amy Hoe, twice. I’m not trying to start any trouble. I’ll do whatever. I’d suck a dick for some basic human rights.

Yesterday the was Friday before Labor Day weekend and I was over with the world. This is always a hard three day weekend for me and not just because of the labor irony, this is the weekend they used to play the MDA marathon but thank God this year Jerry Lewis is dead.

tumblr_ng32ibpEP71t7lixko1_500_zpsoxiogzipI meant to be facetious, the only time I ever knew it was Labor Day weekend was if someone told me directly but this year it was different. Maybe because everyone left so this was the first weekend in a long time that it was just me and my broken wheelchair.

Did I mention my wheelchair is broken? It’s been broken since before I even started this blog and I’m still fighting with insurance. I’m extra crippled so I use this electric chair and now it only holds a charge for about an hour or two of actual movement; this is a big reason I only eat once a day and even then sometimes I don’t bother. BTW, this is why you should be kicked in the kidneys if you’ve ever used the phrase “wheelchair-bound.

giphy 1_zps24wdkwdbDid I check the battery? Of course I fucking did. That’s as stupid as asking someone if they restarted their computer. I’m a professional cripple™ so I think I know what I’m doing.

Except that I rolled the dice and put out for a new battery on my credit card when the insurance wasn’t going to do anything, then it turned out to be the actual wheelchair that had finally died.

My wheelchair is over 10 years old.

tumblr_nyrq0aa42C1u9127so1_400_zpsrdaseelnYou are supposed to get a new one more often than that but the last time I needed to replace this wheelchair this mother fucker the salesman did exactly what I knew he would, exactly what all of those people do, fucked me because he was on commission. He ordered the most expensive thing and added everything he could despite my specifically saying not to put anything on the order after it was out of my sight. I couldn’t even sit in the thing because as soon as I did I would slide out. There was so much machinery around me that I couldn’t have driven it if I wanted to. I insisted he take it back with him. I had to yell at him before he took it. He told me I couldn’t get another one and he was right.

They told me I had to wait five more years and here I am.

Here I am…

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I called This Dude at 3 o’clock Friday morning, spit out all the serial numbers stamped on me, and explained why I was up at 3 o’clock in the morning. My caretakers have too little hours. My mom is getting worse. I’m getting worse. I have to stay up all night to keep mom from leaving the house even though all I can do is sit in front of the door. With no assistance I hadn’t been able to go to the bathroom in 12 hours.

Then my voice broke so if I had pulled off sounding like I wasn’t crying it was game over. I quickly asked him to call me back and got off the phone.

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This “nice guy” never called me back, of course. No one did. It’s been a little over a week.

When I first got that call from Nice Guy everyone was so excited but I kept telling them not to get their hopes up and lookie lookie here, I was right. It wasn’t just pessimism. But pessimism had a lot to do with it.

PS. Because of some paperwork auntie took from me back in what they tell me was May I owe Social Security $800 for the error and my disability is still $3.

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This a gas chamber reeks of pessimus.

Deadpool is disabled

Although not a mutant Deadpool is part of the X-Men franchise and what is X-Men? Disabled metaphors!

But Deadpool is one of the (more than you would think) comic book icons who have real-world disabilities to take subtext to text.

What I’m presenting to you now is an introduction to Deadpool in the specific context of his disabilities and I will try to point out the most reoccurring themes that disabled people know to be ableism but NTABs always miss.

Deadpool has a variety undiagnosed and undefined mental illnesses. Most assume they are either the result of his brain cancer or the ongoing medical torture he’s received throughout the years

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Very little is known about Deadpool before his diagnosis of terminal cancer but regardless of whether he was ND before this time or not his childhood was very hard in ways that disabled children are very familiar with

Parental/caretaker abuse/abandonment

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(Which recoccurred in his adulthood)

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and socially “other–ring” in childhood

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As stated before, Deadpool has undergone medical testing and abuse time and time again to the point where one diagnosis we can easily make is PTSD

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Anxiety also seems clearly straightforward

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as is depression and suicidal tendencies

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In fact, his most popular romance with the personification of Death itself is debated to be real (as the personification of Death is an actual character within the Marvel 616 universe) or “all in his head”

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The only clear physical disabilities are his deformities

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(which formed as a result of medical experimentation after his diagnosis:)

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and chronic pain

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What isn’t as clear are what fans debate might be schizophrenia

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and DID

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Along with both forced and voluntary medical treatments he has also undergone forced and voluntary psychiatric treatments

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Although Deadpool primarily seems ND he struggles with not having passing privilege

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or self acceptance

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But his self acceptance tends to be of the “fake it till you make it” variety which is handily torn down each time by an NTABs

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And whenever he genuinely deals with ableism openly people judge him as bitter

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and lazy

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Although he tends to make friendships with the less advantaged and likewise disabled people

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people tend not to want to be associated with him when in “better” company

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and they are willing to use him as a scapegoat for any shortcomings they don’t want to take responsibility for

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Despite actual ability or qualifications Deadpool is denied legitimate work

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He experiences discrimination

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has been raped (something that happens to disabled people more than any other marginalized group)

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often lives in poverty

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and he has to do destructive things as coping mechanisms

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More often than not Deadpool gets simply disregarded as “crazy” or people try to find a “method to his madness”

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but Deadpool is simply Deadpool and although no one else can understand it he makes it work for him as best as he can

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What is cripple punk? #cpunk

I saw Kevin or Chad or whatever; he’s an aryan dude who was captain of the basketball team but then he got drunk or fell off something he was climbing or some other dumb shit and now was paralyzed and he was constantly telling everyone how he was proof that you should treat disabled kids like they’re real people.

I mean, yeah, duh, he was one of them who accidentally became one of us so of course he was like them.

Cripple punk is like punk but there is a lot more sitting.

I think it’s also the only legitimate subculture in the disabled community. There are many subgroups but they fall short of an individual culture. Cripple punks refer to themselves as cripple punks, they don’t consider themselves to be a part of AB (able-bodied) culture, they have their own language, they (seemingly coincidentally) have a similar aesthetics, they are creating their own art solely meant for their own community, they have their own doxa, and they are creating traditions.

This isn’t unusual for a marginalized group but it’s a first for disabled people because up until the last few decades those of us who were kept alive were isolated from society and each other.

James I. Charlton made a great observation when he said, “The key to unlocking the dilemma of identification and its failure lies in the phenomenology of oppression itself. Fundamentally, identities are contrived because they only exist as products of domination. Social groups exist as collectors of people whom the dominant culture selects for exclusion.”

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We struggled to build communities but our history was effortlessly appropriated to be a brand for “edgy” people

Disability is a cultural construct.

If you don’t know what that is, Google it. It’s not my responsibility to educate you.

Except that’s kind of what I’m doing.

It was about 10 years ago on Tumblr back when it only worked 90% of the time (as opposed now when it only works 80% of the time but never the way you want) as the “social justice warrior” term was being coined I was seeing more bloggers coming out as disabled. Before that there weren’t many of us and a lot of us didn’t last long. Suicide was one of the major causes.

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I never understood why the term “social justice warrior” was supposed to be offensive. It’s kind of like when men were afraid of suffrage and made political cartoons about the slippery slope leading to their having to wash their own dishes.

It wasn’t “online bullying” although we would be hard-pressed to go a day without death and rape threats but it never seems like a big deal because to a lesser extent you get the same thing simply blogging as a woman. We were killing ourselves at our national average but suddenly people were noticing because blogs would suddenly go dead. Able-bodied people would follow us because of shared fandoms so when we disappeared the void was felt because of the sudden drop in content being produced.

It was actually able-bodied people taking note of the suicides that made me stop blogging about disability for a long time.

There was this disabled blogger who got popular for constantly starting arguments when people posted ableist things and when she killed herself no one saw it coming. People knew that we were friends so I kept being asked what happened and I didn’t know what to say. I knew why she had done it, I had discussed it with her many times and I supported her decision. I didn’t condone it but I wasn’t in a position to condone it. When I told people that she had her own reasons and I respected her decision they got really mad.

Which made me really mad.

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I’ve always wondered what “temporary problems” people who say this are referring to. Temporary how? Like a herpes flareup?

She was in an impossible situation and there was no helping it. People felt sorry for her, they would send her messages about how she was unlike any other cripple person because she stood up for herself. These people couldn’t understand how a person that inspirational could just give in. They were so shocked they forgot everything about her besides the fact that she had committed suicide.

I tried to explain to people there was nothing I could do to make her life better and neither could she; the one thing she had control over was her death. She could choose to wait until one of her family members killed her or her insurance didn’t approve something serious enough but she also had the option of deciding she was done and die in a way of her own choosing.

Her life never belonged to her. She hated that. She decided that she wasn’t going to let them have her death either.

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The suspension of disbelief starts with her access to bleach and hair dye. And romance novels. And everything else.

I wish I could give you her name but of course we all went by screen names and that was a time where you would change it depending on the season or your mood. She’s just another one of the nameless dead. She knew that’s what she would become and we joked about it.

It was either that or become a poster child for some charity and we agreed we didn’t want to do that anymore.

And as someone who was a Jerry’s Kid whose image was used without her family’s knowledge or consent I’m not being facetious.

I’m sure everyone has a version of the way it happened but from my perspective I saw people come out explicitly to reprimand some of the increasing pro–eugenics posts. Most of the posts weren’t intentionally pro–eugenics. Most were things like people advocating for legal abortion because… You know. Us.

I was one of those that accidentally came out enough times and got enough followers that I realize I could never go completely back in the closet like I use to do when things got hard. I specifically made a side blog which I named gimpunk; obviously I still like the name, combining the “p”s seems cool to me.

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God, I’m jealous

Death is not something I’m unfamiliar with I was born with a terminal illness so I regarded my death like many middle-aged people, it’s going to happen at some point and I wanted everyone to remember who I wanted my stuff to go to.

I’ve also had a lot of people in my life die, most significantly my father who raised me; his funeral was set on my 13th birthday because everything bad that happens to me is also kind of funny.

The hardest funeral for me to get through was a friend of mine at 16 who had the same disability as me. We met a few times at MDA camp and, remember how I said everything was funny, years later I found out we actually lived in the same town all those years. We ran into each other vying for the handicap space at a movie theater.

My friend got pneumonia and it wasn’t too long before she was hospitalized. With something like pneumonia and conditions like ours it be like the equivalent of ripping your heart out and seeing how it goes, there is no surviving it. No one could really understand why she was so unphased by it or why it made her mad when people said she was an inspiration.

My friend was cripple punk.

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Model: Bukashka
Artist: Ram Zorkot

My childhood best friend from kindergarten on had a pink wheelchair, she taught me how to smuggle things into school with it. One of my mom’s favorite anecdotes was when I brought the channel changer to school with me and spent the day pushing the buttons, hoping the TV at home was changing channels, hoping dad would think the house was haunted. Everyone laughed at the time but you can do that shit from your cell phone now so I was a visionary.

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Devin McGrath

My best friend would do these amazing things, things I couldn’t fathom and most days still can’t. She called people’s bluff. She was willing to face her punishment for not finishing her meals in the 15 minutes we were given to use the cafeteria before the normal kids would come in and could see us. She was willing to face her punishment for not referring to herself as handicapable. When we were all lined up against the side of the “portable” a.k.a. special ed, waiting for buses and other kids for being assholes she was willing to face her punishment for talking back to them.

One time she just left.

She went to sit under a tree.

That tree we always talked about looking so nice in the summer when we had to lineup on the pavement facing the 3 PM sun against the beige plastic backdrop.

When they brought her back she left again. She would keep leaving until they could think of the ultimate punishment for us. We didn’t know what this punishment was but it was supposedly worse than what our peers were doing as they passed by.

They would sit on her footrests.

tumblr_lbytqmwVgk1qa38rro1_500She laughed when they did it because that meant they had to come out of the shade as long as we did so it a bigger punishment on them. I didn’t dare laugh but I tried to convey through eyes and smiles “OMFG I love you.”

After I started joining her to sit under the tree they separated us but we were together as much as possible and we had those 3 to 5 hour bus rides home together.

That amazing supernova shit kicker is cripple punk.

Like I said, I thought gimpunk was a little more clever, but whatever. (Actually I really liked it because it started with “cripple” and calling myself crippled was the one thing I refused to cave in about.)

There have been cripple punks all throughout history. Ones like…

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I saw someone make a really good point once, the fact that it was trendy to publish black and white photos of news events in the early 90s makes it hard to convince people that these are current events.

There have to be some, right? I know it’s not just millennials, I know the ADA was created in the early 90s because I’ve seen the pictures of disabled people climbing the stairs of the White House while I was surfing through Google a few times. I’ve seen those really cool pictures of abandoned asylums where people like me would’ve gone but other than that I didn’t know anything about disabled people.

Maybe it’s better that I’m sticking with gimpunk. I don’t know if I can call myself cripple punk just yet but I’ve been a hard-core fan girl of it my whole life.

Most disabled people were horrible like on TV, either bitter or able to get better and I wasn’t able to get better.

I would get reprimanded when I said that given the chance I would want to keep my body like it is. I was obviously not like disabled people. That’s what people kept telling me.

I was praised for not being like other disabled people. For not being bitter, for not getting in the way, for not talking back, for apologizing when someone hurt me, for smiling, for looking able-bodied outside of a wheelchair, for being willing to be seen in public in a wheelchair, for not killing myself like they would have in my situation.

They always got really upset if they weren’t the ones responsible for our deaths.

Death has always been omnipresent.

I kept getting different expectations of what my life span would be and over half the population thought I should kill myself which I don’t get, it just sounds like they’re admitting that they’re weaker than me. If they thought sitting in a wheelchair all the time was bad enough to kill themselves they were obviously very sheltered. It was amazing how sheltered people were even if they “know exactly what it’s like” because they once spent the day in a wheelchair to see what it was like. Everyone was sheltered, especially the medical professionals who swore they knew better than me and never were.

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Speaking of Harley Quinn…
Physical handicaps are made the emblems of evil… Giving disabilities to villainous characters reflects and reinforces, albeit in exaggerated fashion, three common prejudices against handicapped people: disability is a punishment for evil; disabled people are embittered by their “fate”; disabled people resent the nondisabled and would, if they could, destroy them. In historic and contemporary social fact, it is, of course, nondisabled people who have at times endeavored to destroy people with disabilities. As with popular portrayals of other minorities, the unacknowledged hostile fantasies of the stigmatizers are transferred to the stigmatized.
– Death, Disability, and the Superhero: The Silver Age and Beyond

Normal people had this weird version of my world where everyone was nice to me, everyone likes me, no one would hurt me, no one would intentionally physically hurt me, no one took me places that weren’t exactly legal, and I never saw or heard anything that weren’t age-appropriate. People thought that those really bad things, the things TV dramas always talked about, didn’t happen to people like me.

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This is the equivalent to the “I’m so excited” episode as far as I’m concerned

I thought there were probably like a handful of other disabled people in the world and if they were alive it meant they were the kind cripples like the characters in wheelchairs that would suddenly appear in “educational entertainment” shows and cartoons. The episode would be about how the normal characters learned that cripple people were just like everyone else. I knew they had to say that because it was one of those shows that was trying to outdo the others by being more “progressive.” Sometimes they had the cripple kid also be the black kid. That’s when you knew they were on a tight budget.

 

I’m saying this sarcastically because I now have to admit I thought that all other disabled people lived lives like able-bodied people thought I did. They told me I was rare, sometimes miraculous, and they were supposed to know because they were the ones that were constantly telling me how much more they knew of the world and I did.

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I think this was edited with whatever software the US government used to start doctoring photos around World War II

But they weren’t necessarily wrong, we were from completely different worlds. I was in their world and for some reason I accidentally got born here. I didn’t know what my world was and I was too afraid to think about it because everyone kept telling me how much I should appreciate this one.

 

And this one sucked.

We all know this is the part where I talk about where I “overcame” which, as I’m saying this, I’m realizing how nasty that sounds in the past tense.

I never overcome anything. I didn’t want to overcome anything.

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Model: Olga Moskvina
Artist: Nika Kurnosova

 

I preferred it when people didn’t even try and they would just leave me alone instead of forcing the other kids on me which only  made them hate me worse.

Long story short, death was just something that was going to happen in the future like any other future event. I wasn’t having a super great time here and it didn’t seem like anyone else was either, why was everyone so concerned with this shit ending?

I said “fuck it” and only thought of events in the near future. Only the things that interested me.

I fucked that, didn’t I? It would’ve been really helpful if someone had taught me any practical skills when I was a kid. Like how to get your social worker to call you back.

Everything I had ever been good at wasn’t worth a shit because those sheltered mother fuckers would dump all these useless ribbons on me and gush about how proud they were. If anything I had done was any good it was tainted by proxy. If they were going to make a big deal about anything I was going to be so passive aggressive that they lost all faith in humanity. God willing.

Don’t get me wrong, I did see disabled people.

tumblr_ldmu80JaL21qfak7ao1_500I saw Kevin or Chad or whatever; he’s an aryan dude who was captain of the basketball team but then he got drunk or fell off something he was climbing or some other dumb shit and now was paralyzed and he was constantly telling everyone how he was proof that you should treat disabled kids like they’re real people.

I mean, yeah, duh, he was one of them who accidentally became one of us so of course he was like them.

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Those were different kinds of disabled people. Beyond our dispositions they were fundamentally not disabled like me. If I tried to point that out to anyone they would try to make me feel guilty for hating myself. There was always some kid worse off than I was and I should feel lucky for being allowed to do as much as I do.

They were Victorian–fainting–couch–style horrified that I didn’t realize how much I got away with because if I wanted to live I had to do what the state said so I really didn’t have any rights, being allowed to live was a privilege. I was living on the People™’s  dime. I needed to remember I was still one of those kinds of kids. It wasn’t politically correct to say special ed at the time so they called us “County kids”

This is cripple punk.

Don’t mistake it for an antisocial or subversive movement or trend, it’s nothing.

It doesn’t matter. Not unless I want it to.

How normal people feel about anything relating to me is not something I give a fuck about. Everything I do is for me, no one else.

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My own life story feels fake. I feel fake. This is all really a stretch, right? I’m telling myself that no one is going to believe this and I’m probably crazy because I know I actually did have it good. I had it better than the disabled kids that weren’t white.

I keep telling myself I’m exaggerating. It seems just like those “special episodes” on TV  that pretend to show how bad being disabled can be. But it don’t care. I don’t care what ABs think.

And I don’t care what other disabled people think.

If you don’t like me making jokes about me killing myself I don’t care. If you don’t want to hear me talk about anything but disability™ I don’t care. I’m done. I’m calling everyone’s bluff.

What can you do to me? Hurt me?

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Evan Keeling

By the way you people talk about pain I would sincerely be interested in knowing how much pain you thought “bad.” Where you would put it on a scale of 1 to 10.

Are you going to kill me? If you’re going to kill me you’ll do it no matter what I say.

And I’m trying not to care that this is coming off across as some liberal diatribe about free speech.

Look, I see absolutely no point in the Special Olympics. Unless you are my kind of cripple I can’t relate to you at all but good on you, I’m happy for you, dude.

I don’t care what I look like. I don’t care about what you think I should do two or about my body.

I don’t care if you think I’m fake because I don’t go to any protests. I don’t have have to prove I was sick enough to be able to avoid it.

I don’t care if you care that I don’t care.

But if you’re cool we should follow each other.

That’s cripple punk.

That’s the tag I would go to when inspirational porn bots infiltrated the “actually disabled” ones.

I had asking my followers for a few days who thought what was better, cripple punk or gimpunk. Both terms were floating around. Gimp was not going to work because SJW ABs wouldn’t share something that had a slur in it. I spent all my time being told that gimp was a slur and I shouldn’t use it.

tumblr_okzgr0I0dN1qeklrro5_250_zpsgnickvn6It was ironic given that cripple is also a slur.

ABs found out that you can’t speak English fluently without using ableist language and when I told people that it made them even more angry and I got more hate mail but I didn’t care.

And then people sent DMs about how much they thought some of the stuff I was doing was cool but explicitly assured me that it didn’t “inspire” them. They sent me encouragement because they thought the hate was obviously getting to me but it didn’t bother me because I don’t care. If you can find something to say that I haven’t heard before I’ll give you kudos whether you think I should be murdered or not.

I don’t care if you use words like stupid and I don’t care if other disabled people tell you you can’t.

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Artist: Robbie Ausberger

But I don’t care about these things equally which is a problem because it inadvertently makes me care that you listen to what the other disabled person has to say and pay them some fucking respect.

I really care then. I’ll metaphorically curb stomp you and if we’re on the Internet that means I’ m coming for that jerk off dream you’re having that you’re allowed to have an opinion. It’s over before it began.

If you agree with me by putting another disabled person down I’m only going to make you suffer more so don’t bother trying to kiss my ass.

That’s cripple punk

And I don’t care what your definition is unless you’re one of my kind. Unless you have a chronic physical illness.

 

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?