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.

Disabling narcissism

The disabled identity is considered to be defined through suffering due to physical pain and extreme prejudice. Those who identify as disabled are considered to be narcissists because the act of embracing that identity is interpreted to be an embracement of suffering in an attempt to gain emotional and financial sympathy.

Both disabled studies and disabled identities have been criticized as nothing but an exercise in narcissism.

Sigmund Freud set the groundwork in his infamously sexual obsessed way in On Narcissism: An Introduction. In it he explains, “It is universally known, and we take it as a matter of course, that a person who is tormented by organic pain and discomfort gives up his interest in the things of the external world, in so far as they do not concern his suffering. Closer observation teaches us that he also withdraws libidinal interest from his love-objects: so long as he suffers, he ceases to love.”

The idea that associating oneself or one’s studies with disability centers around self-centered suffering is continued to be perpetuated

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Queer writer Norah Vincent said disabled studies are a form of “self-righteous goodspeak” and “the newest branch of social theory and its ignominious bedfellow, identity politics”

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Feminist academic and social critic Camille Paglia describes it as, “the ultimate self-sanctifying boondoggle for victim-obsessed academic-careerists”

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Conservative commentator Walter Olson who believes the ADA has “paralyzed” the US working industry concurs by saying,“You can’t win. Call attention to disability and you’re oppressing them, ignore the disability and you’re making them invisible”

This Nazi mindset is also applied in the training of care and medical providers. A popular and standard exercise is to have students spend a day or more in a wheelchair so they will know what their clients feel like both physically and emotionally.

Despite what inaccurate representation conveys, disabled people do not have the privilege to luxuriate in self-pity. Let me explain it through condition popularly featured in feminist and gender studies, menstruation.

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Those who menstruate each month endure physical pain, limited abilities, and discrimination; and like disability the condition and its severity is unique to each person. Those who have never menstruated can simulate the experience by inducing cramping or wearing panty liners but the fatigue and neurological symptoms cannot be replicated, nor can the social stigma.

Menstruation sounds (and literally can be) intolerable but 50% of the population lives with it and the subsequent hormonal conditions between cycles each month. It is just as reasonable for those who menstruate to not be allowed to live as it is for disabled people to not be allowed to live.

Those recently disabled do indeed tend to form an identity through suffering much like a child finding their underwear bloody does, but it’s not realistic long term. Despite shedding of the uterine lining or, even difficulty in walking, people with these conditions have to work, socialize, worship, and a number of other things that define their social identity.

Self-pity is not realistic on the outskirts of society where disabled people live. It’s a popular pastime among NTABs. These people often participate in the Suffering Olympics and as if envying a fish’s ability to swim they are jealous and therefore resentful of disabled people’s automatic gold medal in the suffering.

Disability is a social construct as it is defined through the perception of nondisabled people considering what is adventitious for society overall, that is the difference between disability and menstruation.

Happy 2nd annual Disability March, here is my protest

I haven’t contributed anything to society.

I was born with a neuromuscular disease which makes my muscles and bones weaken until I prematurely die.

I’ve always been a temporary fixture in my family’s lives, a genetic embarrassment, a social burden. A week before I turned 13, my father, a decorated Vietnam vet, was murdered by a drunk driver who only received community service. My mother developed aggressive early onset dementia as I got out of school and now I am her caretaker and sole provider but the only thing I can provide is a cut of $850 I receive each month from disability.

I was put in special ed although I took all the same classes as my nondisabled peers who consistently received things like detention or passed with Ds and Cs on their report cards. I was an honors student K–12 because I had to be; if I didn’t it would be evidence that because I had to sit in a chair with wheels I was underperforming and would be a bad influence on the normal children. I was never at risk for detention not because of my good behavior, but because my consequences were to lose the privilege of a standardized public education. Not complaining was a lot harder than studying because (and in spite of) my being a special ed student required attendance from me in the segregated facility, away from my classes. The short bus dropping me off at school and back at home hours late each day because of understaffing.

As hard as it was, I managed it, but I couldn’t do the same in college and I had to drop out. $850 a month couldn’t cover transportation, food, assistance, etc. even though a scholarship could provide textbooks.

I’ve written my own books; books on science and spirituality as well as an array of fiction. Books that were well received and still sell consistently, but I’ve never received a cent from them and can’t hold my own copyrights. As my health degenerates I am more and more dependent on the healthcare I received through disability so I’ve had to forfeit the rights and earnings of everything I’ve created because as time goes on I can create less and less but if I get taken off of disability I can’t get back on. On paper it looks fraudulent that someone who is supposedly as terminally ill as I am can somehow go off of disability and support myself for a limited amount of time.

I can’t be a true friend, neighbor, or citizen. I can’t leave my house; I can’t afford the bus fare for the handicap bus. I can’t show my face in public; two years ago which bashed out my front teeth but my health care can’t provide treatment. I can’t connect to people; the worse things become in America the more I am blamed for being nothing more than a leech, a useless eater.

I am the problem.

My life is a burden to the entire country.

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.

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.

Disability Rights Protest

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.

I love my disability

My public persona IRL is incredibly friendly and funny and “eccentric” and I know I obviously developed these characteristics to a cartoonish level because of my disability. You have to survive off of the benevolence of others. But one of the things I do that people refer to as “eccentric” or me just being me, like boys are boys, when I want to leave a conversation I do it blunts to the point of offensive but so jovial that people always think it’s endearing.

I curb my language depending on who is around me or where I am but if I’m with someone I consider my friend I will just suddenly say, “okay, you’ve been here enough, get the fuck out.” It’s a passive-aggressive spoon theory. Or friendly–aggressive? My disabled game is off the charts so I easily hide the fact that I always feel ill, in pain, and I will push myself to limit. Most of us do this among some people but I’m still self-centered enough that I’m not going to “borrow” any spoons for anyone.

Of course that hurts all of my relationships but besides that I wonder, if I didn’t closet the fact that I have a chronic illness would I be even remotely like myself? This is then obvious observation but it’s one of those things I’m realizing our a basic skill we are seemingly born with like their ability to swim. They can throw their babies in water right after they’re born and they can swim.  Their babies will almost immediately lose the ability to swim, they don’t need to survive in the water so they don’t bother remembering how to swim, it’s logical. That’s why they don’t utilize the all of the resources they can find in nature.

We can and do use just un–fresh water to use more ideal environments for ourselves. To be their equivalent of or demolishing everything and building from scratch, I don’t mean this in a long term evolutionary scope, right now they still keep building society in ways they themselves are constantly complain about. Their thing is building big shit, I get it, but it seems so counterintuitive.

But maybe I’m being naïve myself. Maybe there is a big detriment to our fixation with continuously churning out content like art and writing and music and innovation… And astronomy, astrology, you know, anything that’s ever had any cultural value.

Maybe Freda Carlo was their Hitler.

But back to myself,

Obviously my being closeted most of the time would help the eccentric thing but I wonder how less “funny” I would be if I were one of them?

I’ve been disabled my whole life so it’s not like this isn’t actually a part of my personality, it’s just a nicer version I use in public like everyone else does but it really seems like it would change the fundamentals of how people perceive me just as a person.

As much as I roll my eyes over the word eccentric and my reputation of “oh my God, she’s so funny, she’ll say anything” makes me swallow my eyeballs I like who I am.

I hate that AB (able-bodied, and I totally don’t mean that as a slur) have such a hard time getting out of a simple conversation. There have been thousands of times that I’ve been with and ABs so awkward with someone they are talking to that it wastes time and both people are dying to get out of the conversation.

My disability is why I don’t have that handicap.

Applicably, I take any complement badly because to me it feels like I’ve made commitments to be certain ways with certain people at certain places. I don’t have time for that. I don’t have time for this either but, fuck it.

It sounds cold or embarrassing even though everyone who is the “funny guy” feels like this but I have so many social tools to manage these things that people have “crippling” anxiety over. ABs will agonize about this happening just one time in their life… For the rest of their lives.

I have no idea what that’s like.

I can intellectualize it but I really can’t empathize. Caring so deeply about someone’s opinion of how you ended one interaction, especially when you never see that person ever again, are things that ABs deal with so often that it’s a cliché on sitcoms. It’s something they use as their representation.

It’s something they even put in their intentionally bad representation of those in their society that they’ve marginalized.

You never see a cripple on TV being embarrassed about calling someone by the wrong name, no matter what race or gender or sexuality.

In the real world there isn’t this petty bullshit. Not on that insignificant level.

We stress over conversations about whether we get to live or die.

ABs have no concept of how common violence is for disabled people because harming someone weaker than you is something that is not done. But that’s the thing, it doesn’t happen, not in that society. It happens in the real world.

There are people who leave the house worried about whether they have their wallet or not, they don’t make conscious decisions of whether the reason they’re going out is worth risking their lives over. It explains why ABs don’t believe that authority figures in their society treat us well. Their job is to treat the weak members of society well and a nice courtesy would be to extend it to others.

There are mutations and illnesses common to ABs so that’s why they find it so shocking that when we go to their doctors they use Wikipedia, our version of the DSM I guess.

It’s also why they don’t consider things being segregation when it comes to anything other than specifically race or gender.

To them we all look alike so they can’t tell the difference between someone with a physical disability or neurological divergence or even be aware that they usually intersect even though that’s common sense – wait, I guess it’s not common sense to them, I take that back. Either way they can’t tell any of us apart. They don’t even recognize their own that they threw out.

And just like every great Society they get rid of the elderly only they do it by but they do it by just perceiving that the old ones don’t exist anymore to kick them out. That’s some real world quantum physics.

That must be hard, knowing that either because of time or something random at any point in their life you will become worthless eater.

They are either in denial or very naïve to be able to go about their lives worrying about things like what their voice sounds like.

This offends some people but honestly, that’s why they are going to die out first. Their infants can swim but it’s the first thing conditioned out. Does it seem as bizarre to anyone else that they brag about evolving past the need for water environments? That’s somehow better than the animals that evolved to be able to live in both? As juvenile as it sounds it actually is homosapiens vs homosuperior and Magneto was right.

Mutant Millennials

Everyone wants us to die, it’s unanimous. They have the capability and the inclination. So why aren’t we dead yet? We don’t have the power that they do. We don’t have autonomy. Our humanity is still disputed. We aren’t alive because we fought hard enough, we’re alive because they need us.

Being born disabled is pretty fucking weird. That’s why I like the X-Men.

ac567f35f7c3890387ba4fdb26860e10A lot of people complain about how disingenuous the “mutant metaphor” is but when I was a child it’s the only thing I recognized as mine. It is what first introduced me to the disabled community.

The “disabled community” was another little girl my own age that I rode the short bus with. She and I loved the X-Men cartoon and every day we would act out our favorite scenes to pass the time. Most days we would pretend we were living on Earth 811, Days of Future Past. We used to role-play like we were mutants being shipped off to a concentration camp.

In case you’re one of those losers who doesn’t read comic books like the writers of Big Bang Theory, here’s the rundown on the X-Men:

Evolution is moving forward and a dormant gene referred to as X is emerging under the ca96b3977b10cb2bec7eb3048835e58bincrease of electromagnetic radiation (aka the Sun because of deterioration of the ozone, radiation, x-rays, gamma rays, radio waves, etc.) Except in rare cases the gene isn’t active at birth and unless DNA tests are done you don’t know if someone will be a mutant, X gene carriers, until they start developing in puberty.

Someone once asked me why mutants were in the same universe as people like Captain America and Iron Man (both gain their powers by “curing” or “overcoming” disabilities) but be treated so differently.

Mutants work best when they are an allegory for disabled people despite the fact that many X-Men also have real-world disabilities. They represent people like me, people who are disabled due to a gene mutation. Their existence scares people; your child could be one and you won’t know until they hit puberty. The way their bodies work is scary. Some of them are scary to look at but some of them have passing privilege and look like everyone else which means anyone could be one and you wont know. And honestly, it’s so hard in the world for cripples mutants that it’s kinder to put them down and out of their misery.

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Even the kindest humans (including mutates) who don’t wish them harm agree that the world would be better off without them. It would be safer. People like Captain America are different because they are selected to be given powers that don’t make them look frightening. Sometimes bad people select another bad person (or themselves) and give them powers but they can be easily targeted by the likes of Captain America and taken care of. Mutants can come out of nowhere, anyone can be one with the right recessive genes.

No one wants a disabled child. No one wants to see a disabled child. No one wants disabled children to see adulthood. The fact that we are born into families outside our communities is our biggest threat.

The gas lighting, the isolation, the emotional, the physical and sexual abuse,  etc. begin as soon as we’re born. We are cut off immediately regardless of how “Christ–like” our family and friends.

5c9ad2f7ea8827be5aca82f9a70e2e8eI was separated from my disabled peers because I was going to mainstream school (normal school) and then I was separated from my NTAB peers. I was constantly late to class because I had to use the short bus and would randomly be pulled out of class to go to some required special ed shit. Sitting in the back of the cafeteria to watch kindergartners get a speech from inspirational speaker who was usually some guy named Chad: the most popular guy in his high school that got in a car accident because he was too shit faced to drive one night and now he’s paralyzed and has charges against him so he’s trying to avoid jail time by doing public service as an inspirational speaker.

9abd06a48515eb99299773bbd7e3326bAt Thanksgiving I would have to sit in the entryway of my aunt’s home because she had white carpets and didn’t want me to dirty them no one said anything but they always wanted to ride in my family’s car because we had a handicap placard.

I was always partially integrated.

Whenever I was called into the portable shed that was special ed (I swear to God, but they insulated it and it had air conditioning so it wasn’t bad) it always had to do with something I hated. Inspirational speakers. Physical therapists. Special ed in general.

The only conversations I ever had with any of the kids that weren’t mainstreamed were in ASL behind the staff’s backs.

I was also constantly being monitored; which they often reminded me of. If I was caught associating with anyone that wasn’t seen as a good influence I was taken inside. even if they hadn’t previously told me that person was off-limits.

55539d0aea39cf3f2f23ea6591a627daAll I had were those long bus rides to be around people like myself that wasn’t a predetermined interaction with adult ABs. That being said, all but a few bus drivers in my life had a silence policy on the bus. We weren’t allowed to interact with each other. We couldn’t whisper because we were too far apart and it’s apparently a law that every bus driver has to love country music but can only listen to it on blast.

I’m ashamed of it, but I really bought into that “other” cripple thing. My whole life I’d grown up with people telling me that I wasn’t like “other” disabled people and since I really didn’t know any I had no reason to disbelieve them.

That childhood friend of mine was different because I was different. I guess my inclination toward egotricities led me to misunderstand what everyone was talking about when they mentioned miracles so I thought I was a special snowflake. The kind of asshole who makes up words like egotricities.

There hasn’t been a moment in my life where I’ve had the opportunity to forget that every aspect of my welfare is based off of the generosity of more privileged people so interacting with other disabled people was pretty scary. It was bad enough being cripple on my own, if I was around someone else it would’ve been fish in a barrel and we’d be asking for it because we were wearing wheelchairs. Acting all marginalized and shit.

f72f830447836c26f4a8d00a5a408309I was thrown in the deep end of a self-loathing head trip when it comes to this Jerry’s Orphan sort of behavior but the final straw, so to speak, was when I published my first book.

I never advertised it so it started to become a rumor about me writing something in a magazine or on a bathroom wall. When I said it was a book they were all immediately struck with inspiration for me. I should write an autobiography!

I was offended. I was in my early 20s, why would I write an autobiography? Over and over again it was explained to me that I’m disabled and if I wrote an autobiography it would be really inspirational. That’s what I should be doing. I wasn’t like other people. I can get a lot of money out of this.

I busted my ass my whole life trying to pass as AB even though it’s laughable for someone like me. Being in the closet with a wheelchair is impossible because it won’t fucking fit.

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NTABs don’t want to understand the reality of disability. Every hell they have ever created has been based on what they’ve done to the members of society that they’ve disabled, we have always been the canary in the coal mine and inevitable end game.

9f49d84e8b528c90dee418f7bf5fa4f6We live in the hidden city buried in the heavy-handed metaphorical sewers of social class. Living in the cold and the dark and the loudest silence you could never imagine. We are living reminders of everything that shouldn’t be living. I can’t blame myself for being terrified of actually planting roots down here, Morlock adjacent. For the first time in my entire life I don’t feel like I’m alone. There are a whole lot of cripples on the Internet and they can’t judge me because I’m the same as all of them, another loser blogger.

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This morning I got a message from someone who needs to wear braces but is too scared to wear them in public. In my response I included a suggestion that they decorate their braces and make a spectacle of it. To not let ABs make it about them.

a37f330c563694ea1ac44f977a709923It’s a trick I discovered a lot of us do. A few years ago I was chatting with someone who had just been released from the ER. So had I! In our conversation we found that we both used our hair to broadcast that we weren’t like Other Cripples™. It always made the nurses make eye contact with us because they were already looking at our heads. My chat buddy shaved their head in different ways, I dye mine blue. I had a bunch of other little fashion quirks in common with all these Other Cripples I was meeting like useing tattoos, nail art, and eye make up as your aesthetic identity because no one can take it from you, even if they cut your clothing off of you. I’ve lost all my favorite pants that way.

I sent the person who had written to me a collection of photographs of decorated wheelchairs, crutches, walkers, neck, leg, arm, and wrist braces I had gotten on Pinterest and in doing so I was looking back at my Cripple Punk board and noticed that a lot of the aesthetic™ pics had been linked to random X-Men mood boards by other people.

I’ve only ever considered X-Men to be a representation of my disability. They were like the usual crip face but from…the cripple’s POV?!

b4651acf25b63e479dd4c04d5fd10f95They got to be bitter and inspirational at the same time. They were allowed to hate humans. They bridged the gap between those who were born with their mutation and those that had gotten their’s after completing a human childhood. Different people had different rainbowed  hair and others didn’t have hair at all. Everyone was the same.

Everyone was different. Everyone came from different places. Different people had different colored skin and body parts. Different people had to communicate in different ways. Some wear grunge and some wear glitter. Everyone had families that weren’t like them.

Everyone was different but they were a family because they were all even more different than everyone else.

Everyone had the wrong bodies.

Everyone was a monster.

Everyone is a villain.

No matter who we are or what we do we’ll always become ghosts in the abandoned asylums getting called sluts by Zak Bagans.

In his article, “A Country of Words: Conceiving the Palestinian Nation from the Position of Exile,” Glenn Bowman speculates about what sustains Palestinian culture and identification, things like stories and music being something people are able to hold onto despite becoming displaced.

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“All ideas of community are ‘imaginary’ constructions in so far as community always exists through the imaging of the group of which one conceives oneself a member. Darwish’s phrase, ‘a country of words,’ has pertinence not only to Palestinians and others who have suffered from nation theft and can only locate their countries in reminiscences, stories, songs and histories, but also to those who, living within existent communities, take the presence of those entities as given” – Glenn Bowman

This is where the disabled community runs into a problem.

633c53355a62d7b8aacacf5fee437f5eAs a community the disabled didn’t have their own traditions or fashion or art. There are a lot of people that happen to be disabled who contributed to these parts of culture but it was a contribution to NTAB culture. Since they were the only ones allowed to use it. Various aspects of our lives has been appropriated for scene aesthetics like various types of Crypto and S&M, Guro Lolita, Bionics, Goth, Cybergoth, Cyberpunk, basically all the cybers, and so on.

Death and the romanticized future. Goth and Cyber are both disabled aesthetics.

Disabled people have been isolated from not just society itself but from each other. Those of us who weren’t put down when we were born or diagnosed were put into slavery, donated to science, or locked away in an asylum. That makes teamwork hard. When the medical field backpedaled after World War II we were allowed to live to be tested on in institutions. But this time with air conditioning like the portable shed my special ed was held in. This sounds better if you don’t account for how fun “portable shed special ed” a0b0bcaf1a58055003d9f109f2c76faeis to say.

It’s segregation that persisted legally in the United States until the end of the 70s under what were called “Ugly Laws” which forbid disabled people from being seen in public. It’s segregation that still exists in plain view with brightly colored signs but yet NTABs conveniently never see it.

The end of the 1970s hasn’t been that long ago. Throughout the 1980s we were finally able to move a little more a little freely and we could interact with each other outside of the operation gallery where our brain fluid were being drained just to see what would happen. Shits and giggles.

a5d237c127869d1d9e446d4085fb658aABs believe that these are problems from the distant past. They make use of all of the advances in science/medicine and never question where it comes from. Just like they never question where charities are putting their money. But rational thinking is not something that they have the neurology to do, it takes a divergence to detect that paradigm.

Everyone wants us to die, it’s unanimous. They have the capability and the inclination. So why aren’t we dead yet? We don’t have the power that they do. We don’t have autonomy. Our humanity is still disputed. We aren’t alive because we fought hard enough, we’re alive because they need us.

I’m a mutant. I have a very rare mutation that seems horrific to humans but really my body just produces proteins differently. Whether it makes me stronger or weaker doesn’t matter. It’s not that big of a deal.

Except that it is.

Physical strength, stamina, sustainability; these are all things ABs daydream Übermensch having as superpowers as. Things numerous economies depend on achieving. It’s evolution. Biologically and economically. It’s Darwinism, a relatively new religion based on the teachings of a ND man. Irony is a hell of a drug.

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ABs can’t live without us because their only coping mechanism is self-destruction. They don’t have the resilience to be in a painful and humiliating position for any extended of time, let alone a lifetime. They don’t know what it takes to retain any self-respect when your voice and body have been taken from you. They have no idea how our bodies work so they keep us on retainer until they can figure out how to take our mutations to enhance themselves and attain unnatural control over creation itself. Stop me if the metaphor gets transparent enough to forgo the window cleaner.

I’ve been in some new Weapon X facilities. Everything is plastic, monochromatic, and cold. The only warmth is from the sterile white sheets bleached thin after being soaked for centuries to erase the bloodstains. And the thread count is always, like, crazy low.

a354b6c30082baa24323d922110efe70It wasn’t William Stryker that drove me to escape, it was a med student. They were blatantly nervous when they entered my room but when Stryker put his hands on me it was startling enough that one student accidentally made eye contact with me. I held that eye contact, even when his fingers were inside of me. It took less than 10 seconds for them to adhere to the status quo and quietly put their head down.

In 1990 we finally got the ADA and Internet.

Those of us who weren’t willing to let the media make live snuff films out of us started talking. The ability to speak for ourselves on an equal platform and then be able to signal boost each other has made our community evolve from a nightmare to a group of actual people. People who have developed their own art and style and language.

35ba124d059b1deb5552c3a485be6eb0You know who wanted to be called handicapable? No one. (Dis)abiled? No one. No one but ABs and Chad The Paraplegic.

We are disabled. We have been disabled. Our bodies are natural but society has been built in such a way that excludes us and thus we are disabled. If you don’t refer to us as disabled you are denying our oppression exists. That we exist.

Insisting that my community was real became important in 2016 after the Sagamihara genocide. It certainly wasn’t something new but it was about that time that the Pulse Shooting happened and the contrasts in coverage was devastating.

As someone who is really fucking queer I did not enjoy the Pulse shooting. I was a little surprised at how surprised everyone else was about it but then again, being disabled you only really hear about people like yourself when they are murdered in theatric ways. I also wasn’t shocked about the Sagamihara genocide. But, I feel naïve; the lack of coverage in independent and social media were enough to make me reassess my life once again.

7057e2f69171799ea1cbe5acbe558645 (2)I was listening to the names of the Pulse victims on a podcast when I lost it. I had been hearing the list all throughout the day but this time I had just read the news that the Sagamihara victims wouldn’t have their names released because it would be too embarrassing for their families.

I was incredibly touched when I read about the handful of citizens who were insisting that they be able to at least leave flowers to show their respect. All they were given was a folding table and trash cans.

Not all humans are bad but sometimes it’s hard to find a good one.

We might finally have a community but one of the unexpected drawbacks is the infighting. It’s mostly generational but there is a divide between those who want to integrate with humanity and those who want to destroy society.

I’ve been involved in this debate my whole life, constantly switching sides, but as I get older I find myself saying that Magneto was right* more and more often.

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*Cyclops was also right