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 told you the SS was after me!

IHSS is putting me under investigation.

giphyNice Guy who we will now referred to by name, David Neves, and Amy Hoe who I’ll be respectful enough to drop the facetious e at the end of her name have finally decided to do something and what that something is is fuck me.

It’s been a while since I updated my nonexistent readers on what’s happened since I’ve been spending a lot of time getting mom into every specialist she was referred to ASAP while recovering from having carbon monoxide poisoning.

That new caretaker, Princess, only worked for about two weeks. She was always late and at least some degree of stoned, which I totally respect, but one Friday she just didn’t come and I was stuck in bed. I can’t even roll on my own let alone get up so I just laid there.

tumblr_nyo8biZLtz1rjvogeo1_400_zpsjnhrqib5The next night (yes, someone got me up before that because luckily I’m paranoid enough to constantly ask people to check in if they haven’t heard from me exactly because of reasons like this) she told me that she’d gone to San Francisco and gotten more fucked up than she intended and she was still coming down. I had her help me go the bathroom and asked for something that had to be on the stove, which is nearly always rice or potatoes but I don’t remember, and after I ate she said she wasn’t safe to go home and asked to crash. I said yes.

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She took off a little before 4AM and although I had stayed up she didn’t tell me she was leaving, I just heard her.

Savage showed up maybe two hours later and was pissed off about Princess but I didn’t understand what she meant when she said she left the gas on and I didn’t know why I was vomiting.

 

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She sounded sorry and like I said last time, she’s in her mid-20s, so I didn’t report her. The only reason I considered it is because I was worried she might do it to someone else and although I know I’m too trusting that people have good intentions I honestly believe she learned from this. Mom was fine because she had taken to sleeping under at least three blankets with her face fully covered so I guess that worked as a facemask because she was fine and I convinced the EMTs that I didn’t need to go to the hospital so I don’t feel like it was that bad. It was… I can’t really explain what it was like but I couldn’t stop projectile vomiting.

giphy (3)Still, I counted it as a win because I was able to keep my word and not go to the hospital. That ordeal would’ve been much more miserable than projectile vomiting.

After that I was shit out of luck because no one had anyone else to recommend and apparently neither did anyone they knew. Zari put me off of it for about a week but I put a listing on Craigslist. She’s a baby boomer so she’s automatically afraid of technology.

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I hired this person:

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I’ve nicknamed her Beauty.

giphy (4)I haven’t known her long but she’s been great. She’s nice as well is responsible. She is also incredibly beautiful. After people met her their first comment when she was out of earshot was “she’s so pretty…” Later she was showing me some family photos on her cell phone and I asked her if anyone in her family was ugly. She took a few seconds and considered it thoughtfully and then with 100% modesty said, “no, I don’t think so.”

She didn’t seem to understand why that was so funny to me.

I have two Valium that Princess gave me from her purse stash. I know I’ve become paranoid that people will never believe anything I say so I showed them to Zari as proof that medication needed to be hidden from Princess.

giphy (5)It’s not like I thought she was going to take something but I had gone into withdraw on many a substance so I know how it feels and I know if I was in her position, having a three-year-old child, I wouldn’t want to risk laying in bed for a week. It’s the old adage of anyone being willing to steal in order to keep their family fed.

I wanted to give the pills back to her but she got really paranoid and meet with anyone because she doesn’t want to give my house keys back.

giphy (6)That scares me about as much as auntie keeping a stakeout on me. I thought she had stopped but apparently not.

I found out about it when a few times Zari came to work and saw auntie parked outside my house and each time she sped away when she saw Zari. That was a little while ago but Savage who starts work at 9 o’clock at night (thus darkness) came one day and there was a car parked outside my house that raced off when she came into view.

Obviously I don’t know if that was auntie and I still had no clue when Savage told me what kind of car it was; auntie as a whole lot of vehicles and when she did come over she kept coming in different ones.

giphy (7)Anyway, I did all the office visits and paperwork I was supposed to do to get mom more hours which has become imperative because she’s now completely incontinent and can even dress herself (or stay dressed) and then had to wait another week recovering from the carbon monoxide but finally I got everything to IHSS that they asked for.

giphy (8)I left a message for David Neves first thing on a Monday morning because he says he only comes in on Mondays but for some reason Amy Ho called me shortly thereafter. Weird considering how resistant she has been to calling me.

She was being incredibly nice so I knew something was up and she “calculated” how many more hours mom could get while on the phone with me and only gave her about an hour more a day so it became clear why she intersected that call.

Still, more time is more time and Beauty is willing to work weekends so I was taking what I could get and I’ve been waiting until I can get mom into her GP to fill out the paperwork again in a little more detail so she can do that to mom.

Doesn’t matter anymore because Beauty texted me:

xxx

I have no idea if she meant to spell her name wrong or not but it’s kind of hilarious that we both call her that… It’s misogynistic but who could pass up such an easy hoe joke?

The person she was talking about… Is Zari. Like I said, she is one of the reasons Amy Ho refuses to speak with me because she was blowing up her phone earlier in the year obsessed with getting more money. I got her to stop calling but she still going crazy at everyone else.

Last winter a storm we had knocked over some of her trees that were going to fall into the freeway which would obviously kill people. The city told her it was her problem since the trees were still on her property although not entirely still in the ground. People were giving her estimates like $10,000 and she still hasn’t gotten them removed and it’s winter again…

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She only has one other client she only has a few hours with so during the week she just comes and goes as she pleases all through the day which was fine because it was good for me and also she was the only one so all of the hours were going to her anyway. Now that she has to share she’s insisting she should be paid more because she’s here “all day” even though she’s only been here in the afternoons for a long time because every morning she has a disaster. And when she is here she is always on her phone talking were on her laptop doing her own thing. She attends to mom as she does it and mom would rather she just leave her alone so I’m fine with that too.

Like Beauty said, I made a schedule. I told everyone that as of the 16th of this month they all had to stick to this schedule exactly.

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The way this investigation thing goes is that someone (it’s supposed to be Amy Ho but she never does her goddamn job) is going to show up randomly and make sure everything is on the up and up.

giphy (10)Oh God, I wish she would.

She’s never met me or my mother. She certainly has never spoken to my mother. All along Amy Ho has been referring to my caretakers as “friends” and I corrected her every time saying that I met them the day they were hired but she kept brushing me off so I knew she didn’t believe me. She wants proof I’m disabled.

Story of my life.

When I was 16 I had to go to the welfare office to “prove” I was disabled which I thought was obvious as I was in an electric wheelchair which is kind of expensive so why go that far when anyone will do. I was wrong. She is literally asked me how she was supposed to know if I was really disabled.giphy (11)

The chick at the welfare office was hostile from the get go but she works in the welfare office so I didn’t blame her but then she said that to me with such contempt that I said, “I don’t know what you want me to do to prove that I can’t walk. I can try to stand up for you but, fair warning, when I get weight on my feet my legs are going to break and you’re gonna have to figure out what to do.”

Having to do things always scares these people.

Too bad Amy Ho is so popular she doesn’t need to even be scared of being scared.

The only thing I can do is bite my tongue so I do. I do my Oliver Twist vernacular.

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Still don’t have a new wheelchair BTW.

Also, I get to pay Social Security $800 in installments so I’ll be getting ironically $800 a month to live off of. I finally figured out why though, it wasn’t auntie’s tampering because Savage reminded me that I made sure I did that paperwork with her in the middle of the night. I didn’t know what was going on at the time but I knew that something was so I was trying to stay safe.

The reason I owe $800 is because in March money was deposited in my checking account which put me over the $2,000 allotment. I could prove I’m still disabled but I still have to give them that money I wasn’t supposed to have.giphy (12)

I wish it was something of various but my birthday is in March and I was having problems getting enough money to pay property taxes so a friend deposited $800 before the checks on my bills had been processed so although my accounting said I was safe I was too ignorant at the time to know how long these things take.

Diary: Happy birthday!

I’m the one that says “I don’t like fancy dates, just some take-out and a movie is okay with me!”

I’m like a golem, if you follow me I’ll lead you to a man in a khaki sweater.

It’s officially March 4 so it’s my birthday!

I try to have no expectations whatsoever. I hate birthdays anyway, you would think it was because my dad died nearly on my 13th birthday and his funeral was scheduled for the day of but I’ve always hated birthday parties anyway.

Dad always made all-cry-until-my-parties-and-flamesa big deal out of my birthday, I always assumed it was because he loves big parties but when I got older I realize that my birthday had genuine meaning  to him. Each year dad would throw this huge party and we had no money so it was all thrift store decorations and the activities usually included whatever you could do with a jar and safety pins. I was very bad at that game. Shout out if you know what game I’m talking about.

hamilton_linda2One year I tried to implore my father not to have a cheesy birthday party for me anymore because he was giving me a quaint childhood and all the movie characters with quaint back stories were the absolute worst. I thought I made a compelling argument but in my dad’s defense I did have a very small vocabulary at the time so how I explained it might’ve been misleading, “I don’t want a party with baby stuff, I want to be like the cool girls. I want to be like Sarah Connor!”

In retrospect I don’t think he knew that Sarah Connor was that goddess from Terminator. He would eventually figure it out because I would go on to talk about her and those movies over the last whatever years until he died. If you turn off the lights, look at yourself in the bathroom year, and say “I don’t know what to watch” I will appear behind you with the VHS copy of Terminator 2.

sourceAnd yes, I know how cliché that is that my favorite movie is Terminator 2. Well, until someone makes a movie greater than Terminator 2 I’m not going to change my answer because you’re tired of hearing the truth.

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Where the fuck was I…

feel-awkward-party-new-years-eve-introvertSo, there is a huge horrible birthday party for 12 years then my dad dies while I turned 13 and I never had another birthday party since. It sounds soap opera sad but it’s legitimately because I hate parties. If the party is for you you feel obligated to be constantly tuned in and making sure everyone is having fun and you have to stay until the very end. If the party is for someone else you constantly feel like you are in the way, mostly because people keep tripping over your wheelchair, and you are constantly looking for a way to leave so you can’t enjoy yourself even if enjoying a party was even remotely plausible. I celebrated my birthday up until my mid-20s by buying myself a cake and now a few people give me gifts, every lonely stranger that friended me on Facebook posts some clipart on my wall, and my common law Boston best friend May has always come over the day of, or the n8370303b4354affa04a84cb8031353ffearest weekend day to it. We usually just have fast food and watch TV. Which is what I would prefer.

I’m the personification of one of the results from that little dream date quiz in those old teenybopper magazines, I’m the one that says “I don’t like fancy dates, just some take-out and a movie is okay with me!”

I’m like a golem, if you follow me I’ll lead you to a man in a khaki sweater.

So Logan is coming out right now and I am an X-Men fanatic and of course this one is big. But the car has been sold but but I finally got approved for the handicapped transit so I make plans to go to see Logan with the May and the only other friends I havtumblr_ok1cbtvrpg1u7j8h8o1_540_zpsa0k2ez66e IRL: sisters Kitten (older) and Darrell (younger). Saturday technically is my birthday but May agreed to babysit her nephew then. It’s weird that she would make other plans on that day given it’s a Saturday and we could actually hang out for a while but when the joke came up of her picking her nephew over me she said “I’ve been giving Stewart my undivided attention for 20 years, it’s someone else’s turn”

When I called transit to schedule a pickup they told me that they didn’t go that far toward the outskirts of the city on Sundays. My guess is that it’s because you have to go under or sticker420x460-pad420x460f8f8f8-lite-1on the freeway to get to the theater and driving on the freeway probably cost them more in insurance and on Sundays you would have a lot of old disabled people wanting to go to lots of different churches and the city is covered in railroad tracks and freeway overpasses.

So the plans were canceled and I tried not to be disappointed but then I thought, fuck it, May and Kitten aren’t free but Darrell and I can go on Monday so I asked her about it and she says okay. Soon thereafter May sent me a message saying that if I wanted she could try to get half a day off sometime next week so I told her Darrell and I were going on Monday and asked if that was too short of notice and she got jealous.

She’s extremely jealous and she will even admit it because she’ll inevitably fail at hiding it. She’s like a jealous boyfriend, if I say “I got this DM from this random guy/girl” she gets all tense and asks what the loser wanted and wants me to verify that I did, in fact, tell him he was a loser at some point. This one time she stopped inviting me to stuff because she said that people like me more than her and she didn’t want anyone to take me away. She literallkinseyy stobbed when she said that.

One would think romantic feelings, yes? No.

I was raised to believe that dating, love, and romance are some things disabled people can’t have so it’s easier to follow that conditioning despite the fact that I do find her attractive. but I know very well that you can love a friend as a friend, have a sexual reactions to them but if you recognize the love for what it is and don’t be weird about it everything is fine. I’ve never in romantic love with her but when we were teenagers I earnestly suggested that we get married if she didn’t find a boyfriend by the end of high school. Gender equal marriage wasn’t even a plausible talking point then so at the time it meant “let’s do the lesbian U-Haul.” I thought it would be a good idea because we had these idealistic dreams of somehow leaving home and making do somewhere, even if it was in the house next door, as long as we weren’t living with our parents anymore. She was right to have concerns but I don’t think her first one should have been “then people will think I’m a lesbian!”

muscular_guy_in_drag_pushes_gun_toting_guy_in_wheelchair-120506
This could’ve been May and I at prom

Everyone assumes disabled people are asexual and agender but anytime I show any sexual attraction toward men people look at me funny although among my friends it means “oh, that’s exotic.” I’ve learned to immediately squash any ideas people are having because if I don’t someone is going to turn thoughtful and say how must be hard to never be able to date. And they say it in front of everyone and their impossible to shake. You try to cut everyone some slacken and make a joke about how of course no one would ever want me and then they get embarrassed and tell you how despite everything you are great. You are not like the others.

tumblr_lh6didd4xx1qafrh6I know disabled people joke about having to hear this complement all the time but I seriously think I’m at least in the top 10 able-bodied approved cripples in the county.

When I was about 10 years old I was in the Special Ed room, probably because the short buses were running late to pick us up again. There was a young boy there, about seven, who had a condition that affected his dexterity so he asked the teacher if she could draw him a picture of the day he’ll get married.c228c3d80df782211e40371e23fa702f

Adorable, right?

So I kept an ear on it to suck up the whimsy that was slowly being drained out of me and I heard the teacher say, “you don’t like it?” He asked, “which one is me?” when she indicated which one I expected to hear “just like you, some people have wheelchairs and since you will marry someone you love it won’t matter what their body is like” but she said, “because you’re in a wheelchair.”

He asked, “why does my wife have to be in a wheelchair too?”

I tensed up.

I saw some of the aids start to look uncomfortable but the little boy said “but I don’t want to marry a girl in a wheelchair.” They all began to laugh.

I don’t know why I would expect differently seeing as how when I was his age the same people were working and I was complaining about how frivolous Valentine’s Day is and someone offhandedly said “you will feel differently once you hit puberty” and I insisted it wouldn’t but everyone ignored me and one of the aids asked me if I meant it. I had no idea if I meant it, I was a child for fuck’s sake, I did know that I wanted to go to my grave never admitting defeat so I said yes. She looked sad and I immediately knew I was about to console an adult about my life. She said, “that’s good, because you can’t. Not that you can’t, it’s just that you have to find someone…” And I jumped on the grenade by doubling down on my stubborn tantrum and insisted that in no way shape or form would I ever have feelings for a boy, that way they cou125ld begin their “remember when cooties were thing?” discourse.

I wasn’t wrong anyway. Technically the youngest males I’ve been attracted to would have at the very least been described as young men.

My feelings on Valentine’s Day have also not changed. I don’t like candy. At least on Halloween you have the option of a trick. On Valentine’s Day you have to skip out on your trick and go home to your girlfriend.

I used to worry that people would try to throw me a surprise party for my birthday or unexpectedly show up with some socially acceptable token but that’s never happened (thank God about the surprise party.) Relatives stopped calling until it was just one or two every few years and now my maternal family as apparently disowned me but I’m also thankful not to be taking those calls anymore.

I can always depend on Facebook, though. I could have sworn this site would be dead by now but even I’m still on it, even if only to use the messenger. Which is why I got my first message on my birthday. It’s from my first caretaker who, right now, has signed time sheets and if she sends them in then the reimbursement will be given to her and she would have to decide on whether or not to keep it or give it to me, since it’s reimbursement for the money I had already paid her. So now the ball is in her court. This is what she says:

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Again, I have not answered any of her messages since it’s just between her and IHSS at this point. The money would save my life, it would clear up my credit card she maxed out, property taxes are due, I just bought groceries and I’m going to be spending my birthday deciding which bills I’m going to feign having lost.

God, such a bitter Betty. I really don’t mean to be but I’m tired and it’s a lot of work to keep the Chosen Cripple™ act up and make sure no one has a chance to get the word “inspirational” out of their mouths.

All I really want to do today is have some 420 snacks and watched Korean soap operas.

Happy Birthday