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.

Happy 2nd annual Disability March, here is my protest

I haven’t contributed anything to society.

I was born with a neuromuscular disease which makes my muscles and bones weaken until I prematurely die.

I’ve always been a temporary fixture in my family’s lives, a genetic embarrassment, a social burden. A week before I turned 13, my father, a decorated Vietnam vet, was murdered by a drunk driver who only received community service. My mother developed aggressive early onset dementia as I got out of school and now I am her caretaker and sole provider but the only thing I can provide is a cut of $850 I receive each month from disability.

I was put in special ed although I took all the same classes as my nondisabled peers who consistently received things like detention or passed with Ds and Cs on their report cards. I was an honors student K–12 because I had to be; if I didn’t it would be evidence that because I had to sit in a chair with wheels I was underperforming and would be a bad influence on the normal children. I was never at risk for detention not because of my good behavior, but because my consequences were to lose the privilege of a standardized public education. Not complaining was a lot harder than studying because (and in spite of) my being a special ed student required attendance from me in the segregated facility, away from my classes. The short bus dropping me off at school and back at home hours late each day because of understaffing.

As hard as it was, I managed it, but I couldn’t do the same in college and I had to drop out. $850 a month couldn’t cover transportation, food, assistance, etc. even though a scholarship could provide textbooks.

I’ve written my own books; books on science and spirituality as well as an array of fiction. Books that were well received and still sell consistently, but I’ve never received a cent from them and can’t hold my own copyrights. As my health degenerates I am more and more dependent on the healthcare I received through disability so I’ve had to forfeit the rights and earnings of everything I’ve created because as time goes on I can create less and less but if I get taken off of disability I can’t get back on. On paper it looks fraudulent that someone who is supposedly as terminally ill as I am can somehow go off of disability and support myself for a limited amount of time.

I can’t be a true friend, neighbor, or citizen. I can’t leave my house; I can’t afford the bus fare for the handicap bus. I can’t show my face in public; two years ago which bashed out my front teeth but my health care can’t provide treatment. I can’t connect to people; the worse things become in America the more I am blamed for being nothing more than a leech, a useless eater.

I am the problem.

My life is a burden to the entire country.

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.

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: IHSS should just drop the I and H

When I first got that call from Nice Guy everyone was so excited but I kept telling them not to get their hopes up and lookie lookie here, I was right. It wasn’t just pessimism. But pessimism had a lot to do with it. 

In our last episode I said I was done. Well, I’m even more doner now.

suicide-gif_zpsgmt7pcggAfter all this time it seems that auntie and I finally have something in common; we’re both done. But our “done”s are pretty different.

Remember Auntie said she was going to take mom to lunch? Of course you don’t. No one is reading this shit. Well guess what, when I asked her what time she went on radio silence.

Then I tried to explain the spoon thing again despite the fact I know it throws her into a rage. She literally disowned me the first and only time I gave it a subtle shot.

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Did that sound condescending?

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I really tried my hardest. This is the first text I sent her without running it by anyone to proofread for anything that could be construed as insulting. I just went with how I write formal emails. Unless she wants me to speak in AAVE I have no other options.tumblr_n66se03AA91rc7zl1o1_400_zpsuoig0sqk

And it would just be my luck that she would trick me into something racist like that.

She recently texted me asking for the infamous door alarm.

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That, apparently, was the wrong thing to say because then no one heard from her and like three days later her daughter, whose name I censored first, showed up one afternoon for it but said she couldn’t stay because her kids were in the car. It really made mom depressed because she was so excited to see her. It’s heart wrenching.

So, I guess when auntie said that she was done what she meant was done sticking the knife in but not twisting it.

tumblr_oun3tfW3y81rohg16o5_400_zpsasyoupfcI’m fucking done.

Like I said, I don’t think about my auntie unless someone brings her up but that void was quickly filled with IHSS.

And now I’m done with them.

I still have not heard from my caseworker/social worker. Let’s call her Amy Hoe. The one time she talked to me all she did was whine about how hard she used to work before she “got burned too many times.”tumblr_oqwrniL4sk1u940dvo9_500_zpsiijrkdzq

She did call once but I was here alone with mom and couldn’t get the phone. I then left multiple messages, all sugary and sweet like last time, apologizing for missing the call and I left my phone number, my address, and my email address. Each week. I left messages in every department, trying to find someone who will least call me back about how to get more hours my caretakers. No one called.

It’s been a month.

giphy11 days ago someone from payroll accidentally picked up and told me to call Amy Hoe. I know better than to talk shit so I told her that Amy Hoe said she would be “out on the field” for three months. She insisted and I hesitantly, and awkwardly, said, “um she said she was going to be busy and I haven’t gotten her to call me back so I was wondering who I can speak to instead in the time being?” No dice. “I really do think she was serious about being out of contact. She seemed pretty stressed. I know it’s hard; social work is horrible. She just said she was little burnt out by going out of her way for people.”

Dice on fire.

tumblr_inline_o5n7o8TrGT1t0ihy9_500_zpspfgwuqqyHow is that insulting? I was obviously choosing my words carefully (badly) but the chick isn’t responsible for going out of her way so long as she acknowledges that it was her choice. Bad things always happen to good people.

I’m not dumb, I know this sounded insulting but she was trying to hang up and this is the first I had spoken to anyone in a month and all that happened then was a promise to call me back.

tumblr_os57kgeMbh1rrkahjo4_540_zpsvogskbskApparently they are BFF because she immediately shouted, “she would never say something like that!”

I said, “well she did.” She tried to bite her tongue and said “that doesn’t sound like something she’d say.” And immediately transferred me to someone’s voicemail.

Idea for a movie: IHSS is actually a secret government agency that gas lights the most impoverished citizens as a way for the Illuminati to make turn America into inspirational porn to broadcast to the aliens.

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I hired that caretaker I was going to interview. Let’s call her Princess. She’s in her mid-20s and she acts like it. Savage rightfully pointed out that she was both unaware and reckless with her white privilege by saying, “she’s white.” tumblr_nxz6fnnsYq1r83d7lo10_540_zpsag45xhh5

She really is a nice girl but she actually told me she misses high school.

What do you say to that?

All I could come up with at the time was, “ew.”

So what did that payroll lady do? She connected me to some guy’s office whom, she made sure to point out, wasn’t there so I would have to leave a message. It turned out to be a supervisor who called me back pretty quickly and was very apologetic. He seemed nice but I’m smart enough not to trust anyone. Ever. About anything. Ever again. He helpfully told me things that I should ask Amy Hoe about when she does a home visit, which would be soon or he would do it himself or… Oh, Amy Hoe never came out and never spoke to me other than that one phone call in and entire year? Then he looked at my file to see who had come out and it was that guy.

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That guy, that superduper supervisor everyone at IHSS stands on their desks and recites O Captain! my Captain! to was the one that came out. The one that told me that IHSS would give me back pay and lost me thousands of dollars which, of course, is on one of my maxed out credit cards. He laughingly suggested that that guy should be the one to come out again.

I emphatically asked him not to reprimand Amy Hoe, twice. I’m not trying to start any trouble. I’ll do whatever. I’d suck a dick for some basic human rights.

Yesterday the was Friday before Labor Day weekend and I was over with the world. This is always a hard three day weekend for me and not just because of the labor irony, this is the weekend they used to play the MDA marathon but thank God this year Jerry Lewis is dead.

tumblr_ng32ibpEP71t7lixko1_500_zpsoxiogzipI meant to be facetious, the only time I ever knew it was Labor Day weekend was if someone told me directly but this year it was different. Maybe because everyone left so this was the first weekend in a long time that it was just me and my broken wheelchair.

Did I mention my wheelchair is broken? It’s been broken since before I even started this blog and I’m still fighting with insurance. I’m extra crippled so I use this electric chair and now it only holds a charge for about an hour or two of actual movement; this is a big reason I only eat once a day and even then sometimes I don’t bother. BTW, this is why you should be kicked in the kidneys if you’ve ever used the phrase “wheelchair-bound.

giphy 1_zps24wdkwdbDid I check the battery? Of course I fucking did. That’s as stupid as asking someone if they restarted their computer. I’m a professional cripple™ so I think I know what I’m doing.

Except that I rolled the dice and put out for a new battery on my credit card when the insurance wasn’t going to do anything, then it turned out to be the actual wheelchair that had finally died.

My wheelchair is over 10 years old.

tumblr_nyrq0aa42C1u9127so1_400_zpsrdaseelnYou are supposed to get a new one more often than that but the last time I needed to replace this wheelchair this mother fucker the salesman did exactly what I knew he would, exactly what all of those people do, fucked me because he was on commission. He ordered the most expensive thing and added everything he could despite my specifically saying not to put anything on the order after it was out of my sight. I couldn’t even sit in the thing because as soon as I did I would slide out. There was so much machinery around me that I couldn’t have driven it if I wanted to. I insisted he take it back with him. I had to yell at him before he took it. He told me I couldn’t get another one and he was right.

They told me I had to wait five more years and here I am.

Here I am…

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I called This Dude at 3 o’clock Friday morning, spit out all the serial numbers stamped on me, and explained why I was up at 3 o’clock in the morning. My caretakers have too little hours. My mom is getting worse. I’m getting worse. I have to stay up all night to keep mom from leaving the house even though all I can do is sit in front of the door. With no assistance I hadn’t been able to go to the bathroom in 12 hours.

Then my voice broke so if I had pulled off sounding like I wasn’t crying it was game over. I quickly asked him to call me back and got off the phone.

Capture

 

This “nice guy” never called me back, of course. No one did. It’s been a little over a week.

When I first got that call from Nice Guy everyone was so excited but I kept telling them not to get their hopes up and lookie lookie here, I was right. It wasn’t just pessimism. But pessimism had a lot to do with it.

PS. Because of some paperwork auntie took from me back in what they tell me was May I owe Social Security $800 for the error and my disability is still $3.

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This a gas chamber reeks of pessimus.

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.

Diary: I hate you all

I’m not an angry person. I’m the type of person who you would assume has a bad temper because I’m naturally argumentative but anger is too physically exhausting for me. AB people rely on anger all the time, easily because of their entitlement of course, but also because they can peace out of any situation.

They can walk away. They can leave the room. They can leave the building. They can hit people back. They get the benefit of doubt. I can’t leave; not on any level. I literally can’t leave the house on my own and going into another room only makes it worse when you are disabled. Everyone is entitled to speak for you and make decisions for you even if they aren’t legally supposed to. When I go to the ER I tell the staff I have MD and then I have to find at least two AB people to ask the nursing staff to change what they had written down, MS, to my actual diagnosis of MD. No one believes me because I sit in a wheelchair so no matter how emphatically I say “not MS, I have MD” I still can’t be trusted to decipher between the two of them.

Auntie L has been “done with” my mom and I for a while now and yet she is the only person medical and social professionals seem willing to talk to. Despite going into Social Security and getting my competency the first thing people want to know is why are they talking to me and not an AB who’s advocating for me?

Assholes aside, like my social worker who has refused to speak to me at all, everyone just assumes disabled people are the least capable of all people. Even about disability. Especially about our own disabilities.

AB people are angry on my behalf when I tell them things that I’m going through which is validating I guess but they then insist I should do something, that I should fight for my humanity. They don’t want to help or anything, but I should totally do that.

They don’t understand when I tell them this is my life and this is the way things work; this is the way things work for all disabled people and it’s much better than it ever has been for us which doesn’t say a lot. I refuse to be a vigilante and then ABs get mad at me. I need to deal with the 24 hour job the state gives me for being disabled as well as having health problems and manage being a member of the most oppressed group in the history of humanity. I don’t have a lot of time on my hands.

This is too much a part of my everyday life that it could never really make me angry but I’m becoming more and more impatient, especially now that I have to take care of my mother who has become disabled. I suppose it’s because I have had to speak on her behalf lately and I can sympathize with her situation so when people act the way they have my entire life is not really about me anymore so I feel guilty for letting it slide.

And then I talked to other young disabled people who are going through all of the same things I went through and nothing is getting better, some things are even getting worse. I suppose the real source of my anger is my own fault because I’m having a hard time getting past the guilt of sheltering NTABs my whole life. If I had demanded respect or insisted people listen to what I had to say maybe things wouldn’t have to be this way anymore. I feel complicit in stripping my peers of their humanity. I can’t imagine there is a worse type of guilt but as someone who doesn’t feel guilty often even a little bit of this shit is too much.

I did it all to survive but I never much cared about surviving so it’s not a good excuse. I wasn’t supposed to live until 30 so whenever things would get bad I could tell myself “it’s not going to last much longer” but now I hit 30 and I don’t have an exact year to shoot for anymore, it just depends on how healthy I can remain and my health depends on being stress-free so even though I still tell myself it’s all going to be over soon I also did that terrible thing where I became an adult and realized even passive behaviors have grave consequences and it’s usually the burden of the following generation.

I’m melancholy because this week I have to interview a caretaker, I have to take a daylong appointment at the bank, another daylong appointment Social Security, I need to find a way to make money to pay off last month bills since my SSI got dropped to $3 after I went in to get my competency. I have to find a way to barter things in such a way that my mom and I can survive this month.

Now auntie L texted my CT Zari telling her she was going to pick up my mother sometime this week to take her to lunch. She didn’t know exactly when or what day because she’s very busy and won’t know until the mornings what her schedule will be.

Well guess the fuck what?

I never know if on a given day if I’ll be able to get out of bed or eat. I never know who exactly is going to be here and when because even people coming here for a paycheck come on their own time. I never complain but it’s been explained to me many times that the pay isn’t great and despite this being a job I need to be thankful for everything anyone does for me because what would I do without them?

They’re right, I can’t do anything without them. They make sure of that.

I never know on any given day if I’ll be okay or if I’ll be in so much pain I start to disassociate and what causes me pain and illness does not factor into any decision because it’s not important to anyone but myself.

Auntie made it clear she does not care about my well-being. She thought it was absurd when I asked her not to let herself into my house and wake me up to scold me about how unlovable I am. I was so incredibly ill after that whole thing I was starting to hope I was actually just dying and now I’m starting to feel that way again.

I’m supposed to overcome my disability to make my disability easier to manage for people who I don’t even want in my life. I have to overcome any physical sensation, any emotional burden, any independent thought.

I can’t do this anymore. I just can’t.

I promised not to kill myself if I found a way to manage things and this is no longer a way to manage things. It may work for everyone but me but at this point I realize that not being selfish is the most selfish thing I can do.

I’m not all suffering and I’m not selfless.

I will not live like this any longer.

I’m already in pain, I’m already hungry, I’ve never had any agency, what do I have to be scared of?