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.

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.

Killing Nazis is suicide

Kill Nazis and all that, yeah, but put practically that doesn’t work because an ideology doesn’t exist inside of a person. It’s an infectious illness transmitted even from the dead.

I wish I believed that righteous condemnation could cure it, but righteous condemnation creates it.

Being offended is easy. Vilifying others is easy. Killing people is easy.

It’s not easy to have such an open mind that you are willing to be convinced that you and everyone like you shouldn’t exist in the world. It’s not easy to convince yourself otherwise once you’ve been conditioned to accept it.

Fascism, eugenics, all the things people claim to hate the most about Nazis are things they fight to defend for themselves every day.

Especially by those who claim to not understand that if someone doesn’t want a disabled child they shouldn’t have a child at all. Those who want cures for the existence of our entire population. Those that live day by day in a world where people are being exterminated all around them and not finding fault in their own houses.

It’s funny, laughably funny, that people are shocked and outraged to see another rise in Nazis when they paved the way themselves. That they can look directly into the eyes of their peers and can’t see the similarities.

I don’t trust NTABs just as I don’t trust Nazis. I will break bread with them and even sit at their feet to hear them speak. Just like I would for all Nazis. It’s pointless not to. It’s hypocritical and it’s ignorant. And I have no choice because there is genuinely no distinction between any of you at the core of your morality.

I can see their point of view, though. I can see why a utopia wouldn’t include me. I inherently believed it when I was a child and as an adult I can sympathize and at times believe it more than they do.

If you’re not willing to sacrifice the self soothing justification that you have a right to live just as you are, you’ll never be able to eliminate Nazis. The infection is already inside you. The calls are coming from inside the house.

Once NTABs advocating social justice and civil rights are willing to consider that the world would be better off without them, to see how the world suffers because their bodies and minds are average, only then will I agree to trust them.

Simply put, if they claim to hate Nazis but choose not to speak about disability as frequently and fervently as they do any other marginalized group then they should die together. Support their own supposed cause.

tl;dr if you aren’t ashamed that you’re not disabled you’re a fucking Nazi. You still want the ability to participate in society so you are fighting on the same side. You aren’t disabled from society. You aren’t disabled from the responsibility of Nazi crimes.

Sometimes I hate neurologically divergent people

Solidarity and all that, especially because I have yet to see someone who is chronically ill not have at least depression and anxiety so none of us are neurologically typical, Karen.

Solidarity and all that, especially because I have yet to see someone who is chronically ill not have at least depression and anxiety so none of us are neurologically typical, Karen.

It’s been an issue not just with NDs but people with invisible disabilities as well.

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Fuck you Gemma

This?

This is disgusting and ableist.

Mental illness may feel like that to you but that’s because you’re fucking ignorant. In what world is this comic hypothetical?

When you are in a wheelchair people tell you you are faking it, that you should try harder, you should pray harder, you should just try standing/walking/whatever more, you are lazy, you’ve given up, using a wheelchair is what makes you need a wheelchair somehow, etc. etc.

If you have a mental illness and aren’t in a wheelchair I don’t really expect you to know this because you have able-bodied privilege.

Here’s the thing… You have to admit to having able-bodied privilege because that’s your only excuse with getting away with this shit.

You are the reason these things continue to be said to us. If you have passing privilege you’re the only one people will actually listen to and so if you aren’t using a wheelchair then shut the fuck up about them.

I was rewatching Jem and the Holograms and didn’t remember this episode so it took me by such surprise I kind of teared up so I thought I would post it. I knew the character was getting a miracle cure in the end, especially since her only gimmick is to dance and the budget could hardly cover her hair, but a scene in which an AB acts like an AB is very rare; he is blind which people keep pointing out even though it has absolutely no bearing.

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To see this gross thing that’s happened to me all throughout my life happen to a protagonist character who doesn’t react like a trope. She was annoyed and he made her more annoyed. Spot on representation.

214,215 notes on Tumblr later (as of when I’m posting this) and it’s been completely hijacked by people making it about mental illness.

That wouldn’t bother me if

1. They didn’t keep making those shitty analogies about us

2. No, that first one is really the only problem I have

It’s not about mental illness. It isn’t. It can be likened unto mental illness and considering how rarely and bad mental illnesses are represented I’m cool with sharing but only if you’re responsible with it.

Throwing us under the bus to gain the favor of NTABs is the most disgusting thing we could do to each other so stop doing it.