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.

Old disabled people are irrelevant

The social model of disability was created in 1975 by UPIAS (Union of the Physically Impaired Against Segregation) but was coined as “the social model” in 1983 Mike Oliver, a disabled academic.

Disabled people didn’t have a civil rights movement until the 80s and much like the feminist movement it was both allies and the most privileged among the disabled who got to speak. At all.

bIt wasn’t until the 70s when all states within the USA finally did away with “Ugly Laws” which were their actual names. It made it illegal for disabled people to go in public. This was due how many able-bodied people who had become disabled by contracting polio and soldiers coming back from war. It was never about minorities.

The ADA, Americans with Disabilities Act, was created in the 90s. Credit for this is a little varied and a little controversial. A large reason why the ADA was created was because of the AIDS epidemic. The queer community couldn’t find help from the government to get funding to find a cure or to treat patients. The only way to get what is essentially disability rights was to reassociate themselves with the disabled community after sexual and gender minorities were taken off the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders.)

Not to suggest that we, the disabled community, renounce the DSM but there is a large dissent growing.  because of what it’s become and how it’s being used.

The key to this was the social model of disability. The government didn’t see GSM (gender and sexual minorities) as disabled people but the case was made that they had become disabled from society because of the disease they contracted which even though patients remained able-bodied was still a terminal disease with no cure in sight. At least at the public know of.

The LGBT™ community now rejects the identity of disabled, although many people in the community never used the word to refer to themselves in the first place. They now celebrate the fact that things like homosexuality are not seen as a disability; that achievement was made through the social model of disability and would not have happened without activism from the disabled.

You might be thinking of intersection at this point. The modern LGBT™ community is largely criticized by DM (disabled millennials) communities because of this and the fact that things like Pride parades want made to be accessible to physically and neurologically disabled people. In the last few years things have gotten better accessibility wise in some states, in certain areas.

There is animosity amongst some DMs toward the LGBT™,  primarily the disabled sexual and gender disabled minorities both for issues like these previously stated and the 2016 Sagamihara genocide in which many disabled people were euthanized inside their segregated neighborhood (something like a group home) by Satoshi Uematsu who had written a manifesto calling for the extermination of disabled people globally. This happened about the same time as the Pulse shooting which was widely reported on and the LGBT™ community in particular refused to ally for their disabled members at that time. Even when the names of all the Pulse victims were released whereas in Japan none of the victims  names were because it would’ve been embarrassing to their families if people found out they were related to someone disabled in the first place.

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The public was forbidden to pay their respects or leave flowers or candles at the site.

Tracking back a little, on through the 80s there were also many disabled protests and activism that didn’t get reported on unless it was a “die in” or the Capitol Crawl. A die in is when disabled protesters sit in public spaces, fasting, and peacefully refusing to leave. These resulted in good for TV moments like public assault by the police.

Much like what happened earlier this year when the radical disability activist group ADAPT (with the slogan “adapt or die”) were violently assaulted and arrested and then detained in inhumane ways and places. The first two were largely covered in independent media but information and proof of the latter came from twitter. Because  the cops didn’t think to take away their cell phones when they were arrested or detained. Although, they pulled people out of wheelchairs so I’m sure many people’s cell phones got busted so someone must have had an old Nokia on them.

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Yes, those are zip ties the police arrested them with.

The Capitol Crawl was done by early members of ADAPT and it was a major event which is given a lot more credit than it actually intentionally achieved. The Capitol Crawl was a protest in which disabled people got out of their wheelchairs and left assistive equipment behind like crutches or walkers and slowly climbed up the White House steps while staff walked past. A now iconic photo was taken of Jennifer Keelan who, at the time, was a young disabled girl who was very white and cute and insisted on making it to the top to complete the protest so the public actually paid attention.

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After that it was a lot of boring political legislation and drama between marginalized activist groups.

The ADA was created in 1990 which was based on the social model of disability. The medical model (which excludes people like AIDS patients) is still heavily embedded in many laws which is why things like segregation haven’t been made illegal. Forced sterilization was delegalized across the United States in as recent as 2010 under laws created for the disabled but had been extended to POC (remind you of anything?) The last victim was in California; reparations are being legislated for victims in North Carolina and Virginia.

In the past, disabled people were usually killed at birth, given a mercy killing if they  were NTAB and became disabled, or simply didn’t live long partly because of the lack of medical advancements but in greater part because they were marginalized and disabled from society.

Millennials are the first generation of disabled people that were allowed to reach adulthood because of things like the ADA. We are also the first generation in the world to have the Internet our entire lives and due to things like segregation and lack of accessibility we built our communities online through social media. Just like other millennial groups. We are the children they fought for and we owe them our lives and our health.

Obviously many of them are still alive as this is relatively recent history and they are like the parents of the disabled community.

shutterstock_202195894-600x600They are completely out of touch and have animosity for DM (disabled millennials) because many of us have different philosophies. One is we don’t want to write letters to Congress to beg for rights, we want to destroy society like other millennial’s in marginalized groups. Essentially we want to make a better world and not put Band-Aids on bigotry.

With the rise of Nazi activity and the fact that it’s actually being covered in the news is especially a big issue for disabled people as the Nazi party used propaganda like mercy killings and disabled being “useless leaders” to carry out our genocide and use the legal precedent to go as far as they did. The infamous gas chambers themselves were first created for the disabled population. For further information the victims were referred to as T4 patients which refers to the preferred drug for execution, Aktion T4.

The number four refers to a street address Tiergartenstraße 4 in Berlin where beginning in 1940 the “Chancellery department” where people received paid training. The most accomplished that went on to run the gas chambers were sent to run them in concentration camps. There were 70,273 T4 victims between September 1939 to August 1941. It was then banned due to what is referred to as the most influential protest since the rule of the Third Reich; NTABs had legitimate concerns of how many and how quickly people were deemed disabled enough to be a T4 patient. Of course, it still continued on. Primarily by Catholic authorities in Germany.

To be fair to Germany, the United States was far more extreme in eugenic philosophies (just the word didn’t have the gravity it does post World War II so there is a misconception that America were the good guys but not to eugenic policies were based off of America’s political philosophies and laws.

Our two groups usually don’t interact very much, even online, but if you follow disabled bloggers or people on twitter you will see them complaining about how people particularly treat “young disabled people” or DMs.

Those disabled people who consider themselves liberal or conservative and especially people who subscribe to the medical model of disability are a sub–community but they are used to being the entire community. They are a sub–community of which is largely irrelevant here because their philosophies are irrelevant.

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This subculture of disability has no term to refer to it specifically, one has yet to be coined, on this issue I welcome old disabled people offer up a term they would like us to use to refer to them. There hasn’t really been a need for a term thus far because, as I said they are irrelevant, and we only talk about relevant things so there hasn’t yet been a need for one.

But I sincerely welcome them to coin their own term but I caution them from doing it on social media as words that are “created” on social networks like Tumblr are regarded as… I don’t know house to put this  other that they are irrelevant. Those terms are given little credibility because they don’t have a long history which can be sourced before the invention of social media unlike the term “social model” of disability despite how similar they sound.

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: Teaching my mom to be disabled is not going to work

I was never born with any so I don’t have the ability to advocate for her unless I have someone with me advocating for me, repeating my words out of an able-bodied mouth

I was emailing a friend so my speech recognition software was on when my mom came in the room so it recorded what I said to her which was

“You can do what you want you can do what you want mom you can do what you want mom can do what you want mom”

That isn’t an error, I actually kept saying it

She’s having a hard making decisions but at the same time she’s getting used to everyone making decisions and speaking for and despite how badly she always dealt with my disability I’m trying to use my experience to make becoming disabled easier on her. But times like this I don’t know if that’s the best idea.

She was trying to decide where to sit, the couch or the rocking chair. To me it’s an insignificant decision but it gives her overwhelming anxiety and she’s becoming prone to anxiety attacks.

She has a little bit of an ability to recall things if you make them simple and repetitive so I’ve been telling her “you can do what you want” in hopes that when I’m not around she’ll be able to remember “I can do what I want.”

Even though I know she can’t. Not because of her disability but because everyone is stripping her of her autonomy and I was never born with any so I don’t have the ability to advocate for her unless I have someone with me advocating for me, repeating my words out of an able-bodied mouth.

I’ve been able to protect her relatively well but when auntie took her to a home it wasn’t a week before she was raped. It was a month before I found out when they finally gave me the paperwork explaining why she was getting kicked out for being too fussy.

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: First

He cut me off screaming that i was lying and assuring me that I was completely unrapeable. I said, “if you’re going to continue to yell this conversation is over” and he screamed, “I’m not going to stop yelling” so I said “this conversation is over”

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I hate memoirs. If you live a life worth being studied someone will inevitably do a biography on you so stop being so presumptuous. When I started writing (publicly?) people always assumed I was writing my memoir because they say you write what you know and people assume that if you’re in a wheelchair all you know is about extended sitting. When I said no, I hadn’t written my memoir, people encouraged me to try. I have funny stories. I have scary stories. I’m vaguely personable. Obviously everyone would love to read about my life.

What would really annoy me is that I knew they wanted me to give them some Secret Garden shit. No one really wants to know about disabled people’s lives. I spend 90% of my time and energy trying to keep able-bodied people sheltered from disability. All disabled people do. Well, unless you’re one of those douche bag guys that fell down while bicycling and now tours elementary schools to tell kids that you’re still a person.

My opinion changed when I suddenly became an adult one day. I saw young teenage girl on tumblr complaining about a specific type of oppression in schools of disabled kids that I had also gone through and at first I was so excited, I so rarely see people who had childhoods anything like mine. But then I realize that she was a child, that she was going through the very thing I had gone through nearly a decade earlier and I felt responsible. I know about the horrible things that are going on and I know that children out there are suffering these things right now, and they have no idea what’s coming next, but I do.

But my life is a shit show, what can I do? I live in abject poverty. I have a terminal chronic illness. I have no resources beyond what Google offers. But I started posting little anecdotes about myself and what it was like growing up disabled and I was overwhelmed with how relieved disabled people were to see something relatable, as I had been, and the able-bodied people were aghast.

This micro concern, to me, came at a time in my life where the world had come to an end again.

My mother and I never got along, my father raised me and I was very close to him but a week before I turned 13 he was killed in an automobile accident. At that same time my mother got laid off and my father’s parents had just died so what little glue that did hold the family together was now completely gone so we were left pretty helpless. Of course, that’s when I get informed that my spinal atrophy had caused me to have scoliosis so bad that my spine was bent over and was crushing one of my lungs. I either had to go in for multiple, extensive, dangerous surgery or I could wait about a year and slowly suffocate to death.stock-photo-27171500-child-handicap-problem_zpsd3a29371

That was the beginning of my first rock-bottom.

My second rock-bottom was right out of high school when I started to get stomach pains. Excruciatingly long story short, I had a bacterial imbalance from some bad food but the wrong dosage of medication was given to me at the hospital and in a Rube Goldberg style medical care in attempts to cover up mistakes that led me to be on my deathbed. My intestines had been all but eaten away in my stomach was destroyed. Blood was coming from my nose, mouth, and anus. I had a hard time staying conscious.

The third, and most recent, time was when the water and electricity got shut off.

Mom had obviously been developing dementia for years but she refused to the doctor, she said it was simply “old age” which I tried to explain was not a legitimate diagnosis but she felt ashamed and frustrated given how bad our lives had been up until then. The only actual friend I had was May and it wasn’t like she could persuade my mom to do anything. My fraternal family is all local but we had completely split apart after that rash of deaths, I kept in sporadic contact with my auntie L but she was a single mother with three children and I myself was a child for most of my childhood so it’s not like we were really going to hang out or anything. My maternal family, which I never considered my own family because I grew up with my mom explicitly telling me that my dad’s family were losers and I belong to the family, her family was her own. They are a big extended Mormon family and as my generation had reached adulthood everyone was scattered across the country.

One day the water and electricity got shut off and I found a word of unpaid bills for three months that mom had just dumped. When I confronted her she was completely apathetic and said she just didn’t care anymore. Mom was always theatrical and constantly bemoaning her fate so that wasn’t anything new but the apathy was, my mom only had two emotions: anger and suspicion. Apathy meant some major neurological revisions.

Mom had racked up about $20,000 in credit card debt. It’s not like she bought anything extravagant, she just never worked after dad died. She had us both living off of my disability and credit cards. Mom had also bought a used van because I need one that has wheelchair accessible and the old one had broke but this one constantly broke as well. Mom tried to return it but she was under a bad contract and every year we ended up spending a couple thousand dollars to fix something on the car that never seemed to work. So, it’s not like that money went anything fun.

44cb9d16ed7e49cb02a923343f8028f0I took over everything and I covered for mom who was still refusing to see a doctor. At that point she admitted that something was wrong but argued that if she went to the doctor and they diagnosed her as having dementia my social worker would probably take me out of the house and put me in a home because my mom was my primary caretaker. I made it for a while but eventually I was only allowing myself to eat once every three days and it was always pizza because I’m too disabled to cook and they are all we had near at the time. When things got too smelly I would order us new pairs of pajama pants to wear off of Amazon because neither of us could do the laundry.

Yada yada, I made very thorough suicide plans. It wasn’t a dramatic thing. I just worked out what I thought I could do over the next two years to get mom insurance and everything else she would need and then to put all of the affairs in order since mom wouldn’t be able to do that on her own and then I was going to kill myself because I wasn’t going to permanently move into a home. Fate worse than death. I shared my plans with May and she insisted that calling my auntie L and asking for help should at least be on my list before suicide and auntie L decided to step in and help me. She has been the only one. Initially my grandfather paid off one of my mom’s credit cards saying that would count as her inheritance which was incredibly generous and I appreciated that he attempted to help with money since he couldn’t help physically but after that whenever I spoke to him he informed me that I needed to just give up and move both my mom and myself into a home.

He also called on my 30th birthday, my landmark birthday of living with a terminal illness my whole life, and told me how much he loved me and how fervently he and my grandmother pray for my death each night so I’ll be able to “run in heaven”

I would rather sit in hell.

Then?

Then…

Luckily for me, I just had to fill a friend in about all of this so here is the email I sent him:

I81860186b40f850252b5906a491ebd58 don’t know what you know and what you don’t know. I don’t know all of what anyone knows which makes every “how have things been” very tedious. Forgive me if any of this is old news or if I just start being absolutely confusing because my memory and cognitive abilities have taken a nose dive from all the stress.

 Mom has Alzheimer’s and refused to go in for treatment. I was told growing up that mom’s family is not my own so I didn’t go to them for help and my dad’s family who haven’t sent out their cease-and-desist letters yet are just my auntie, her three children that are about my age and their very young children. All of them have extremely busy lives, intense careers and children to prioritize. If I went to any of them for help I would never be able to repay them and it would take time and money away from my cousin’s children. I figured it also didn’t really matter because I was nearing 30 and the doctors had promised me I wouldn’t make it past that so I was trying to bide my time and take over mom’s finances so one of her family members could easily transition into helping her when I died.

Things were beginning to become unbearable. At some point I couldn’t get either mom nor myself to any doctors appointments because the car completely died, we would eat about once every couple days and that tended to be whatever could be delivered to the house. Also, neither of us could do laundry so everything was dirty and so I bought a cheap pairs of pants on Amazon each month. The house was always tidy but if anyone looked close it was obvious that it was dirty and we started getting a bunch of ants. Mom, of course, became more violent than usual and she had already hit the ceiling on verbal and emotional abuse so that stayed about the same. The whole thing sounds crazy but I suppose the situation was a lot like with those women who stay with her abusive husband’s. I literally had nowhere I could go, so literally I couldn’t even leave the house since I can’t get the door open on my own. My mom has been extremely abusive my whole life so I was already used to this sort of thing.

The only person in my life I could actually go to was May but years before when she was going to therapy her therapist advised her to not be a part of my life. People like me always have horrendously depressing lives and May should stop seeing me so she would be less stressed. Without knowing that’s what her therapist said her whole family came to the same conclusion. Of course I won’t tell you why she was going to therapy but it was for something extremely serious and instead of addressing that she was counseled to take me out of her life, although I was totally unrelated and since her family assumed the reason she was going to therapy was because of me, because being friends with a disabled person literally drives you crazy, they were giving her the same advice the therapist was somewhat coincidentally. May went with it, and I don’t blame her because telling her family what had happened just wasn’t an option for her. I feel guilty but there were a few times I regretted forcing her to see a therapist but it’s not like I’m a saint. May took the therapist’s advice and started to distance herself from me, trying to join the circle of friends her siblings belong to whose problems were a lot easier to deal with because they were all healthy and had a lot of money, mostly family money. Then mom kept getting more violent and one day shoved me out of my wheelchair breaking both my ankles, my knees, my wrists, and my nose.

So at that point the cat was out of the bag and everyone had some idea that things weren’t going well here, at least that mom had Alzheimer’s and I let her tell everyone that I had simply fallen. My auntie, who is a good person, forced mom to go to the doctor and tried to start the paperwork having an in-home aid while I was living in a home for a while which was a complete nightmare. I’m lucky nothing too bad happened to me because about 90% of women get raped in homes and while I was there it happened to another resident. I didn’t get out of all the statistics, though, because the staff was pretty bad. My casts were removed because they were put on badly so on top of the excruciating pain of all of those injuries and the fact that I was always given my medication late my legs were constantly being messed with. If I couldn’t keep from crying when I was doing something like changing clothes the nurses would yank on one of my broken legs to “give me something to cry about” and one time a nurse then had me down against the bed and asked me if I was calling for my mommy and telling me how pathetic I was for crying all the time.

It didn’t really brother me because I knew that she could never trade places with me, she wouldn’t last a second, but I learned my lesson and never complained about anything and cried as quietly as possible. I also got in trouble because my roommate was supposed to lose weight as part of her rehab but she would steal my meals and I didn’t say anything. Obviously I didn’t want to complain but I also didn’t care because I was so used to not eating and so incredibly sick from the stress anxiety and depression that when I tried to eat I would just throw up. I felt a little bad that I was ruining her rehabilitation but I figure she was an adult woman and can make her own choices. If she wanted more food she should be allowed to have more food.

My mom’s family was informed about the situation and my grandfather said “you both need to just move into homes” aunt ML said “she’s just getting old, it’s not Alzheimer’s and it was just an accident” and aunt K said, “that’s too bad.”

Did you know the thing about aunt K? My father and both his parents died around the same time so my mom got my inheritance pretty much on my 13th birthday. K immediately asked for $10,000 to buy a new car because hers was broken and mom actually gave it to her saying “it’s not a problem because I know if I ever need help you’ll be there for me” when actually she was doing it because she wanted to impress her mother who she believed hated her but when grandma found out she wasn’t happy and said that K was a narcissist and would never pay it back. Before my accident when I was trying to get mom’s affairs in order and pay off these two credit cards she had maxed I had no idea about I got so frustrated that I called K and explained we were in a bad spot, my mom’s credit card debt was ironically $10,000. I asked if she could begin to pay it back, even if that just meant a few dollars a month. She was immediately furious and said that that it was a gift and I was completely out of line; I’m a very petty person so I couldn’t stop myself from saying “Grandma was right about you, she begged mom not to give you the money because she knew you’d never return it” K went into hysterics and refused to speak to me but mom refused to speak to her because she was so embarrassed to be asking for money but we arranged for K to send $50 a month to pay for half of mom’s medication at the time.

This is all relevant later, I wasn’t going on a tangent.

I wasn’t well enough to leave the home but they evicted me because I was there for “rehabilitation” and as I am disabled and will never be “rehabilitated” it didn’t count and my insurance wasn’t paying for it anymore.

Torturous months go by that I won’t give you the details to but eventually I’m well enough to be back in my wheelchair and after a few months of that I was strong enough to do more than just sit or fall out of it so I tried getting back to my attempt at putting affairs in order meanwhile my auntie L was still trying to get any type of help, even Meals on Wheels but when they say you have to spend a few years waiting they actually mean it. Nearly on the very anniversary of my first fall mom knocked me out of my wheelchair again. This time it was an accident because she was having a confused episode. Once again I broke both of my ankles, my knees, my wrists, my nose, and this time I bruised my ribs, had my front teeth broken out, and had the skin scraped off of half of my face. Did I mention at this time I fell out of the car? That’s probably why it was worse. Apparently it looked pretty bad too because there were a few people who saw me even after I was all mended and cleaned up and just burst into tears. I think that’s a bit dramatic, my heart goes out to the Elephant Man.

I get sent directly home because the insurance isn’t falling for it twice and it takes me about half a year until I can get my wheelchair again, auntie L spent the whole time trying to get anything accomplished and nothing ever did. It again takes me a long time to get enough strength to even drive my chair and of course mom had just been steadily declining and she started losing the ability to cover up any type of violence. Super long story short, my aunt found someone who did caretaking under the table for a friends family member and so I hired her. Auntie L had figured out that as long as we have documentation of her pay and her hours that once the government did approve getting some in-home assistance the government would reimburse me. So, I have no money whatsoever but I do have a credit card and PayPal so for about a year I use my credit card to give her $350 a month. She is a nice woman, I understand she was never trained in anything and being thrown into the deep end like that would have been terrifying, so I let her come and go whenever she liked as long as she made sure mom ate every day and did the laundry. We were having no improvement with IHSS, auntie L finally broke down and went to their office in the capital and threw a fit, threatening to sue so they expedited my case. That was a few months ago and for me to be reimbursed my caretaker had to be verified by the government which means she had to have her fingerprints taken and go to a two hour long seminar which apparently cost her $100. It took a couple weeks to get her to finally do all that. The next few weeks we kept waiting and urging her to feel out the time cards so I could get reimbursed, meanwhile I was still paying her through PayPal because she had to send in paperwork she hadn’t yet for her to get her check from the state. She kept making excuses and the thing was she didn’t want to account for the money because she was afraid of what it might do to her Social Security and was afraid of paying taxes.

My mom’s family never came to visit and for some reason think I’m lying that mom has Alzheimers because until recently she could hold a very short phone conversation that they could justify as her just being slow and forgetful because she was getting older. Mom stopped being able to speak on the phone at all about a month ago but her older brother Cox started calling and I ignored it because, like I said, they aren’t my family and I had constantly been reaching out to them these past few years to at least come visit mom while they still can. Also, Cox has never spoken to me let alone looked me in the eye. I don’t know if he is grossed out by me or if it’s some social status thing because he got in on IBM in the beginning and is extremely wealthy and fucking pretentious. Grandma and grandpa got us all out to dinner one time years ago and it was a little bit fancier than an Olive Garden and mom commented on how good the food tasted and I swear to God, he scoffed and said, “I’ve dined at the finest restaurants all over the world, anything I get here will won’t impress me.” Mom was actually in awe, I wanted to punch him in the face.

Anyway, Cox had been calling at first it just went unanswered and at the time I decided I was going to try to put my feelings aside and advocate for my mother since she couldn’t and I knew that she would have wanted to talk to him. So, I called him and I vaguely explained where her health was at, when and what her next appointments were for, and that we were in debt but on the waiting list for caretakers but we were trying to get expedited. He asked a lot of invasive questions like “well, what are you wasting your money on?” and informed me that I would be sending him my financial records and he would tell me what I needed to cut. I sent him the information because I am very very petty and I wanted him to see proof of all the money I receive each month and that only expense that wasn’t “necessary” was cable but I was keeping it because it was packaged with the house phone and our Internet and was actually the cheaper option. Before he argued that I didn’t need the Internet, I let him know that I physically can’t pick up the phone anymore so I use Skype to make all my phone calls and therefore need the Internet. While I was sending him all that he called the house and because of my luck my mom picked up and he told her that I was telling the whole family that she had Alzheimer’s so I could steal her money (the only money she’s ever had was my inheritance which she gave to K and any thing left over was she spent on redecorating the kitchen right after dad died) she was obviously confused and terrified because I had been trying to get her to believe that everything was relatively normal and he literally screamed over the phone that she need to sell the house and put me in a home immediately. I had to call my auntie over to calm her down and I called him back again and was condescendingly nice and pretended I thought maybe there had been a misunderstanding and he hadn’t heard me correctly but then he literally started screaming at me. That I was a liar and that he knew about K so I was obviously trying to “extort” money out of the family, the only reason I called him was to try to get money at him. To spite him I stayed calm and spoke in a normal tone so he had to stop screaming I told him that the arrangement with K was with mom and each month the $50 went into helping pay for medication. I said that going into a home again wasn’t an option, that they were very dangerous places. He cut me off screaming again saying that i was lying and assuring me that I was completely unrapeable which is kind of a weird complement in a way. I said, “if you’re going to continue to yell this conversation is over” and he screamed, “I’m not going to stop yelling” so I said “this conversation is over” and hung up and haven’t heard from any of the family since. The next day the $50 check came from K so I mailed it back with a note thanking her for the help and apologizing if there is any misunderstanding or she felt coerced into sending money because I told her what grandma said about her which I acknowledge was not the proper thing to do given that she had just died. I also apologized if she felt I was “extorting” money out of her. I was hoping the quotes around extorting made it clear that I was referring to what I assumed were conversations between her and Cox.

At this point, mom is really bad and can’t take me to the bathroom or get me up and I sleep with this really old cell phone in case of emergencies but I’ve gotten so weak that I can’t push the buttons so I was stranded in bed the whole day but luckily May stopped by that night because she was coming over to do something.

So now I’m completely back to where I was before she started working here and although I can now hire someone from the state to come to my house it’s going to take a couple weeks and there’s a very good likelihood that I will never get reimbursed for anything because she refuses to send in the timecards. Things aren’t so bad as before because coincidentally last week I finally got approved for Meals on Wheels but those are TV dinners which neither my mom nor I can even warm-up. And I finally got approved for using handicap transit. Public buses aren’t accessible but if you can verify that you are disabled which I could (but it took weeks of suspicion so I can’t imagine what it’s like for people who aren’t so extremely gimpy) which means I can finally go to a doctor. Maybe a dentist so I can get some front teeth. Certainly my GP who I have to somehow get to this week or he’s not going to fill my medication anymore and if I go even a day off my medication I can have a heart attack and die. I had planned on the caretaker being here because someone needs to stay with mom and I need someone to go with me but I wasn’t completely concerned because I was sure I could find even one person who could free up the morning but now I need two people and May is working, her mom is taking care of the grandchildren, and my auntie will be taking some of her grandchildren to school out of town.

We are trying so hard to find a place for mom but no one is taking new residents. We have a little help now because since my dad was in Vietnam the Veterans Association might pay for her to go to a private home. I really need someone to live here but I definitely wouldn’t put anyone through that until she is gone. Even so, that doesn’t seem likely. I’m only asking that they pay for their own food and utilities and their chores. No one likes the offer.

May explained that it was because no matter what a person would still be signing on to a life that included disability and for obvious reasons no one wants anything to do with that.

I know I’m just going to have to find someone on Craigslist or something which is perfectly normal and I shouldn’t be scared but I’m absolutely terrified. I’m an only child and all my life I either only lived with my father or my mother so this is going to be really foreign to me. I’m also just scared, I only know relationships where you bide your time until you get so hurt you have to break ties and I’m not sure what sort of hurt I should expect with a complete stranger I’m living with; it could very well be a type of hurt that I haven’t experienced before and have no coping mechanisms for.

I think I kind of just snapped this weekend. I don’t want to sugarcoat things for anyone anymore and even though every time I’ve asked someone for help who has insisted that they would be there if I ever needed anything they immediately peace out. I’m just gonna take every offer given, I give up all pride or shame. I lost contact with a lot of friends like you because I don’t want to be a burden, I wanted to fix things and hit everyone back up when things back to normal but I know that’s not possible.

That first caretaker finally turned in all the paperwork she needed to and then was going to be paid by IHSS after receiving her timecard. I knew the check would probably be late and that this woman didn’t have a lot of money either so I paid her with my credit card for that week and then the next she texted me asking me to send her money.

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What I didn’t tell my friend was that when the caretaker didn’t arrive it was at the worst possible time. May was out of town, auntie L was out of state, mom couldn’t even use the phone anymore, and I’m not strong enough to work the buttons on my cell phone so I spent the day in bed unable to move or go to the bathroom but luckily May came home early and checked in on me.

The thing about the money gets even more complicated. The reimbursement won’t be sent out for what I paid the caretaker until the time sheets are signed by either me or my auntie but regardless of what happens the reimbursement will be sent to the caretaker. The one who abandoned me and has been dodging us. Do you think she will come over and give me those thousands of dollars I gave her? It doesn’t seem likely so I haven’t done anything but now it looks like the reimbursement might go through without my signature so she might be getting the money anyway.

Thank God a couple weeks after that IHSS finally came through with a new caretaker. She is loud as a motherfucker, manic as hell, and tries to multitask too much. Mom hates her. Every day they scream at each other. Mom sincerely and the caretaker in a kind of condescending joking manner.

I’m happy.

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She may be condescending, but she doesn’t belittle mom and she actually has experience with dementia. She is an amazing cook, this is the first time I’ve ever had a home-cooked meal that wasn’t like hot dogs at May’s parent’s place. She has torn the house apart deep cleaning everything because even though the place is tidy it’s dirty and it was beginning to smell. She cares about the well-being of mom even when mom is at her worst and has used her personal time to contact different government agencies to try to get more of our paperwork in order.

We still have no one to work nights which is why I’m here now. I usually don’t go to bed till around three but the last couple days it was like 7 o’clock in the morning when I went to bed. All the screaming kept me from sleeping in too late, though.

Oh, and look what the first caretaker sent me recently

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I literally have said nothing to her since my text back to her that I wasn’t paying her. I’m still not going to answer, let IHSS work it out.

She is upset because IHSS knows what she did and now they obviously won’t hire her. And the rest of this is kind of sad… The holiday food? Apparently her daughter had told her she was a narcissist and stood her up for Christmas so I invited her over even though I really didn’t plan on celebrating it (not in a bitter way, but a “not having Christmas is my Christmas gift” way) and she did bring something she had already cooked but everything else was provided by my mom’s church or me.

She told me that I needed new bed sheets so the next day she came in with sheets she said she got at Goodwill for $1. In return, she borrowed three of my shirts and obviously hasn’t returned them. It seems there are a few other things missing but that could just be mom throwing things out when no one’s looking.

She came in one night to help me into bed, I guess that’s what she’s referring to with the emergency help thing. She also came in at least an hour late every day and left at least a half-hour late every day.

She did bring in a few cartons of milk over that I’m surprised she didn’t mention but I guess she wasn’t going to try that seeing as how every day she ate two meals and snacks throughout the day all week long on my dime.

I’m really not even mad, I’m just exasperated.

This woman is self-destructing and the countdown seems to be going faster the more I ignore her messages. I just pity her, she keeps digging herself holes when she totally didn’t have to. If she had responded to me that night and said that she needed the money then I would have sent it to her, I would have borrowed it from May and sent it to her right then. Even after she left I left it up to IHSS and she was so suspicious of what I might do (maybe someone informed her how serious charges could be filed against her) that she would call and say things that would of course not get verified by me or any documentation and now she’s under all the scrutiny.

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