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.

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?