What being a disabled millennial like

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How can I not thank them?

How can I take the risk of not thanking them?

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

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

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

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

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

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

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

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

Uninspirational Inspiration

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You don’t need their approval.

You don’t need their respect.

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

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

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

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

Don’t confuse their failures as your own.

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.

Diary: IHSS should just drop the I and H

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

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

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

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

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

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Did that sound condescending?

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

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

She recently texted me asking for the infamous door alarm.

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

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

tumblr_oun3tfW3y81rohg16o5_400_zpsasyoupfcI’m fucking done.

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

And now I’m done with them.

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

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

It’s been a month.

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

Dice on fire.

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

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

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

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

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

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

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

What do you say to that?

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

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

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

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

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

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

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

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

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

My wheelchair is over 10 years old.

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

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

Here I am…

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

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

Capture

 

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

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

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

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This a gas chamber reeks of pessimus.

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

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.

Where did all these crippled people come from?

People are always making comments about how they’re surprised or skeptical that someone young can be disabled. There is a very simple explanation for that: millennials are the first generation of disabled people whose majority reached adulthood.

People are always making comments about how they’re surprised or skeptical that someone young can be disabled. There is a very simple explanation for that: millennials are the first generation of disabled people whose majority reached adulthood.

There are all these misconceptions about disability that are fundamental issues for us; we spent all of our time explaining/justifying our existence to able-bodied people. We have to explain basic things like it being illegal for us to get married, illegal for us to travel, our minimum wage being set at $0.22 an hour, our not being allowed to have savings, our only being allowed to have $2,000 at the most at any given time, that 50% of all murders committed by the police in the United States are disabled, that we were systematically and legally sterilized until 2014.

bUp until the past few decades “disabled” people were people that were injured or elderly. At times most disabilities were war wounds and if you were disturbing to look at you weren’t legally allowed to be in public. Those were called Ugly Laws and they ended throughout the United States throughout the 70s. Able-bodied people were coming back from Vietnam only to find that they no longer had a place in society and that’s why things change. For them, not for us.

If any child was born with a visible disability they were immediately killed. They were considered to have died in childbirth and most parents weren’t informed about the reason.

When it became evident that a person had invisible disabilities like mental illnesses and certain genetic mutations they were gotten rid of in three ways: wealthy white families would have a nursing staff at home where the disabled person would be hidden, the family would kill the disabled person in what was considered socially/politically/question acceptable as a mercy killing, or they would be sent away to asylums.

It’s perceived that these asylums you see in horror movies are from eras back but there are still people alive today who survived those facilities before they were condemned. When those most heinous institutions were shut down and abandoned they made more. They made more that didn’t look as bad. Everything remained the same and the three options families had or wanted remained the same.

As a marginalized people, disabled people didn’t receive civil rights until 1990 when what we call the ADA was created. These ratifications in the 90s have still not eliminated basic things like segregation.

That these things are still going on, let alone legal, seems far fetched to people because those are the issues they read about in history class. They, able-bodied neurologically typical millennials, learned about racial prejudice in such a whitewashed way (pun intended) that most are also shocked to learn that there are some people alive who remember racial segregation. The average person can tell you who Rosa Parks is but not Claudette Colvin. When they were taught about the Holocaust they didn’t acknowledge queer people; they were never told that the infamous gas chambers were originally built for disabled people who were the Nazi party’s first successful genocide attempt.

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1990

They didn’t learn that America had a more aggressive eugenics system, that the Nazi party adopted it and the only reason any were outlawed in America itself is because the association with Nazis with such bad press internationally. It’s the same reason that little girls have to wear pink.

Before World War II pink was seen as a gentle red, the color of blood, so boys were dressed in pink. Blue was associated with the Virgin Mary so people would dress their daughters in blue. You can see the story of eugenics in any toy if you know what you’re looking at but no one does.

Well, they don’t.

That’s the reason they don’t pay attention to things like the 2016 genocide in Sagamihara, Japan. Despite it being a first world country, one of our allies, and their government’s refusal to release the names of the victims as to not embarrass the families just as all of the Pulse victim’s names from Florida were released in full.

They don’t notice because they don’t think genocide of disabled people is entirely bad because they only know the kinds of disabled people who used to be one of them. Sometimes in TV and movies they have people who became disabled but then things like magic or miracles happen and they became able-bodied again. One of them again.

Most people have never seen a whole disabled person.

Admittedly, we are seeing a few actual disabled people (disabled as in society has disabled them, they didn’t become a fallen hero or a cautionary tale) but all of them are from that top-tier of disability, the privileged white ones. In defense of privileged white ones, they don’t get anything beyond crip face so it’s not all that great, but still.

We have to be fair and remember how ignorant they are but we also have to be fair about our demands for visibility.

Praise Hephaestus, the Internet came to life just as this real generation of disabled people did and we took advantage of it. Some of us could stay in the closet in real life but a lot of us couldn’t. Even then, those of us who couldn’t/can’t are still constantly questioned and criticized because able-bodied don’t believe someone that looks so young or “healthy” or even happy could have a disability so we are constantly coming out every time we leave the house… So we sometimes chose not to; we stay at home and pretended to be one of them.

A lot of people still depend on being in the closet. Unfortunately the Internet hasn’t always been our friend, because of social media if we are outed in one place we are outed everywhere. Then we have to come out every time we log on because we might be lying. We don’t sound like disabled people, whatever they think disabled people sound like.

For many people it’s still a matter of life or death, families still don’t want disabled relatives to the point where they kill them. Legally.

5956907918000035006724c4_zpspxlh2sqoThere’s hardly ever any news about us so we tend not to notice but the legal precedent for killing your disabled child is to dismiss it as a mercy killing. Even rape is given the equivalent sentence of bestiality because laws made when we were considered inhuman still remain. There are still a lot of hospitals that kill disabled people as soon as they’re born and the parents still aren’t told. We still have parents suing hospitals because they wanted to keep us but the hospital never gave them an option.

So although it can get frustrating when no one includes you in their “social justice” remember that there are a lot of reasons they don’t know we exist and there are a lot of us that are alive only because we can keep their existence a secret.