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.



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.


I hired this person:


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:


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.


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.