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.

Diary: I was dealing with the SS and now the KGB is involved

Auntie is back.

And nothing has changed.

Throughout the months I haven’t posted I finally got mom all her doctors appointments, I got her diagnoses, I got her new medication, I got things straightened out with IHSS (as much as possible) and finally, things were becoming manageable.

I really really really wanted to be able to start going to my own doctors this year. Two years in a row a few years ago my mom dumped me on my chair which broke both ankles, both knees, my left wrist and my nose both times and the last time I also cracked a rib and broke some of my front teeth. I’ve never been able to go to any doctor about any of this, not even a dentist. I didn’t even have enough spoons to take care of mom but I did and now I’m permanently a lot weaker. If I get much weaker I won’t be able to drive my wheelchair.

And then my maternal cousin contacted me.

I’ve never liked my maternal family other than one of my aunties. Not that she isn’t unlike her family; she’s stolen from elderly relatives, she disowned her grandson for marrying a woman carrying another man’s child, she has admitted to having favorite children of her own. The thing is, she’s upfront about who she is and I respect that even if I don’t always agree with what she does, especially because it’s not my place to pass judgment.

I don’t want to, I just want to know who expects what out of me.

All that being said, her best quality is that she would give you the shirt off her back if you needed it. She may steal future shirts from you but she’ll make sure you’re still warm.

One of the sons she doesn’t care for very much also never really fit in with the family, but we never bonded. He is a nice guy who means well but his ego always seemed his main concern. He’s so pretentious that he actually carried around the laptop one Thanksgiving talking about how he was writing a book and it was going to be amazing. I bet you anything he’s done that shit in Starbucks.

He may have gotten better since he’s had kids, but his wife is really nice which is a good buffer for his personality so I don’t really know. He and I have always disagreed on fundamental issues and I’m pretty sure we still do, but I’ve always thought he was a good guy.

Despite what I think of him I’m obviously not a good judge of character. So when he contacted me, I asked people for advice and they all told me that I should ask him for help. They always say that, about everyone, in every situation.

If I ask people for help who offer it they do help, but they immediately feel overwhelmed and will try to convince me to get help from anyone else no matter the consequences. If I don’t ask anyone for help people get angry when they find out a fraction of what’s going on and accuse me of being an unloving bitch who doesn’t trust anyone.

That last one is true, but people can be real dicks about it.

Why should I trust people when everyone but my father has betrayed me at one time or another? Why should I trust people who don’t understand what’s happening and not only do they refuse to learn, they accuse me of lying?

If you aren’t disabled you obviously aren’t going to know what it’s like to be disabled but you can at least learn the language, I should be able to use the term spoons around you without you rolling your eyes. You can acknowledge at the very least what the laws are concerning people like me but everyone believes so deeply that society treasures the disabled. The government gives me everything. I can stop anyone on the street and ask for help and they will be more than willing to do anything for me.

The reality of disability has never scared me. People’s refusal to acknowledge the reality of disability scares me more than anything.

So my maternal cousin, we’ll call him B, contacted me offering help and everyone said I should take it, so I agreed to meet with him. I would’ve done that much anyway but the best I could do was actually be truthful with him instead of being allusive.

He still a member of that family so his first and only solution is to put mom in a home which will be inevitable, of course, but isn’t necessary yet. He did surprise me when, on Christmas, he brought us a bunch of preserved foods, essential things like toilet paper, and socks.

I was so shocked I cried.

It was so thoughtful (and probably from his wife) that I’m giving him the benefit of the doubt. Sort of.

Do I trust him? No. Do I think he understands anything? No, not in the proper context. Do I think he has any respect for me? No. I very much believe he hears everything I say with the caveat of “she’s sheltered.”

Which would be hilarious if it weren’t the reason for 90% of all of my suffering.

I told him I was open at looking in the homes and when he asked me about auntie. I said that I wasn’t really sure what had gone on, but I think she got burned out on helping so I didn’t feel comfortable asking her for help. He asked if he could talk to her and I said that was fine. I don’t care as long as everyone is being honest with me.

So apparently he texted auntie saying that mom was completely unable to take care of herself (true) and that I could hardly take care of myself (WTF.) Auntie came over this morning when everyone knows I’m sleeping to visit with my mom. She refused to see me because I’m “bitter” and the caretaker here at the time, Zari, agreed not to tell me she was here, but Zari did when they left.

Apparently auntie was talking about how B was getting involved because my mom has a gigantic inheritance and the family wants to take it. She’s been saying that all along, which now strikes me as incredibly suspicious.

My maternal grandfather paid off a large portion of my mother’s debt which was incredibly generous so I wouldn’t find fault if he left mom out of the will. Not that anyone cares what I think. The only thing mom could do with the money is use it to get care which would be amazing but it isn’t my business because it isn’t my inheritance. Mom blew my inheritance from my father. Neither she nor I could even accept an inheritance now anyway or we would lose disability which means no medication which means death.

Each of us is only able to accept gifts worth less than $500. Less than $100 if it’s jewelry.

But no one listens to me and everyone wants some of this mysterious inheritance.

The executor of the will is my maternal uncle who told me no one would ever rape me. I don’t think he’s interested in giving me anything and I’m certainly not interested in accepting anything from him. If for some reason mom inherents something I’ll try to make sure she can use it but I don’t want it.

So, my auntie won’t see or talk to me because I’m probably “bitter.”

I’m not bitter.

I hope one day I will be bitter but as of right now I’m still just terrified.

I’m terrified of how she lets herself into my home to throw medical cards at me while yelling about how I don’t know how to love people because I apologize for everything too much.

I’m still trying to work that one out in my head and I’ve admitted that she’s not completely wrong but I think that people should try to understand instead of just telling me what to do.

Somehow she doesn’t understand that it’s terrifying that she can and has called offices telling them I’m a liar and crazy and not to speak to me. She doesn’t understand how terrifying it is that they listen to her because she sounds so kind and I’m crippled and thus probably retarded. I’m pretty sure she also doesn’t understand how terrifying it is that if I were retarded this still wouldn’t be okay.

I’ve never been quite this terrified.

When I found out she was here I started to shake like when my body goes into shock.

Why won’t people put half as much effort into listening to me as they do trying to gaslight me?

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.

Jerry Lewis is finally in Hell where he belongs

We all hated Jerry Lewis.

He was making a living off of us. We are literally one of the textbook cases about how corporate charities and funding for “cures” were nothing but snake oil.

What has 10,000 legs and can’t walk?

Jerry’s kids.

No one gets that joke anymore because the Jerry Lewis telethons ended in 2010 but before that the MDA (Muscular Dystrophy Association) aired a telethons every Labor Day weekend and Jerry Lewis hosted it. It would air live 24 hours a day for three days.

Children with muscular dystrophy were lovingly referred to as Jerry’s kids. When I was a child and people asked me what my disability was they didn’t understand until I finally said, “I’m a Jerry’s kid.”

After he was taken off air we became a part of history. New textbooks on disabled studies talk about us and I’ve got to tell you it’s really weird to read about yourself in a history book.

I was very lucky/unlucky to live in Northern California which is the only place they held the camp for children with muscular dystrophy, we just called it MDA camp. It only lasted a week each summer and so few girls get this disease that we always got a cabin to ourselves. Some pretty not great stuff happened there but I would go through it all again because the first time I ever felt normal is when I got to see those girls each summer.

It was even enough to make up for the year that they took footage of me laughing at the camp and then played it on the telethon in slow motion to sad music. Without anyone’s consent or previous knowledge. I’ve got to tell you it’s really weird to see yourself in live inspirational porn.

We all hated Jerry Lewis.

He was making a living off of us. We are literally one of the textbook cases about how corporate charities and funding for “cures” were nothing but snake oil.

Here are some of my favorite Jerry Lewis quotes:

“I’m telling you about a child in trouble. If it’s pity, we’ll get some money.”

“Pity? If you don’t want to be pitied because you’re a cripple in a wheelchair, stay in your house!”

“God goofed, and it’s up to us to correct His mistakes.”

“Do they want to talk to the 135,000 who are afflicted, who call me their hero? They’ll get killed. And what about the S.O.B.s who come to you and say, ‘How much do you get out of this action?’ You have to smile, because they have capital punishment in most states.”

Burn in Hell you piece of shit.

Sincerely,
Jerry’s orphan

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.