Disability and the Lucky Ones

Today I found an electric clothes dryer I don’t feel absolutely sick buying. My mom has a dryer. That’s who has a dryer. I don’t. I can’t do that. If I buy a dryer I am giving up. I am accepting what society desires and becoming a Stepford American who dries their clothes lazily and wastes electricity and resources and tons of money on dryer sheets, and smell good, and then pollutes. The dryer buyer is a very unlucky person. To be able to buy a dryer is the luckiest thing I have ever done.

Which as always begs the question: Who are the lucky ones? Ray Kroc was always the guy who made me really think about who or who was not lucky. He was able to become wealthy and see his passion and hard work play out well for him but until this movie nobody, well very few, knew his name, everyone knew Ronald, but nobody knew him is that lucky? Then there’s John Wayne Gacy’s sister, who I think about way more than I should, but could you imagine what she went through? Is she a lucky one? John loved her. He wouldn’t hurt her or her family; so yes she was safe from his behavior and a man who wasn’t afraid to kill had her back but she was so emotionally hurt by his actions. Was that lucky? No one called her the day he was executed to say how sorry they were. Having a serial killer on your side is a very lucky thing but it would hurt the heart.
I don’t know what lucky means and that is weird…and neat.
Most of time I only believe people who have gone through serious hardships are the lucky ones. As far as I can tell they are the only people who truly appreciate life. But how is going through hardship lucky?
-And this is why Ryan is amazing because every time an appliance or anything breaks I take it to another level.
I have always hated Walmart. It was really easy to stand firm in my beliefs against big box stores until moving to Thomasville. Bear and I ended up not having great transportation and I started ordering everything from Amazon Prime! It’s amazing. As is Walmart. They have everything you want at one place!
Printer Paper and Coffee Creamer together at one store! Um, what! But for every job Walmart creates they pull 1.7 jobs out of the community.

I am back to not supporting box stores and that is when the dryer shit the bed. Ryan’s first idea was Lowe’s and it made me the saddest. Bear has no strong view points against dryers but he understands why we aren’t ready for a dryer.  You read my last blog, right?  We need very little possessions to hold us to this place; we are not ready for a dryer. Unfortunately, we live in an apartment without a community laundry room and the management yells at us for hanging clothes outside (they also yell at us for keeping our Christmas lights up too long but Ry and I both have a strong viewpoint on this subject, so we are fighting for them) and my PA has a tough enough job keeping up with my schedule without adding in the laundromat. I found a really nice guy in town selling a refurbished dryer for really cheap which, I’m hoping will break again in 6 months and we can be dryer free.  Based upon all facts provided I think we may be a couple lucky ones.Bear and I should put our energy into fighting for a community clothesline, but my lights make me so happy and I really need that right now so I will fight for my own benefit today.

Today I need my lights…

Being married and refusing to deal with emotions is a very difficult task. I have learned marriage is not in fact being able to tell a person they have to have sex with you because you’re married; it is more about communication, I don’t communicate. I don’t even communicate with myself, really. Back in the day I meditated every day before I started my day, I randomly stopped when Bear and I got together but since my realization that I blatantly ignore the complicated feelings I have I’m trying to get back on track-that’s what my self-help guy calls them, “complicated feelings” like I’m a freakin’ Emo kid- I can show him complicated.

Today I was laying in bed with Audrey concentrating on how safe I was and how the bed had my back when my phone alerted me I had received a new text. I realized the PA was late and I may have to really worry so I read the text that inturrepted my peace.

PAs are a very difficult thing for me because I am a very strange, difficult and private human. My dad asks everyday if I’m in the C.I. A because I literally get pissed when people ask, “How’s your day?” “Why the fuck should I tell you?”  I like very few people and assume very few like me. Unfortunately, a PA is a very needed person for me and they must be around me like 7 hours/ day.

For a time I only hired guys, (VERY SEXIST…EVERYTHING IS ABOUT TO GET SO SEXIST) because in college it made life way easier…No muss. No fuss. They were stronger. Less drama. They didn’t need to be best friends with me.

  • Ryan is a male

I have suggested Bear to hire a male PA for some time. Ryan is a male, for one. At this time, for our situation a male PA is a better fit. Bear just got behind my idea last week. His PA works for both of us every other weekend. The guy, who is amazing, is a stay-at-home dad and our neighbor and has enough hippie in him to understand my behavior, was turning in his application and such to the company that hires our PAs and our case manager said it was, “inappropriate for Brittany (me) so we would need to select another female candidate or wait until the company finds someone more suitable.”

I know what a gigantic sexist bitch, but first let’s get to this “until the company finds you someone more suitable”

Do you know this company? This company put a thief in my home and two people who had a fist-fight in our bedroom. No thank you. I can find someone more suitable than they ever could! They have shown how incapable of this job they truly are, idiots.

Secondly, I received no email asking if I felt uncomfortable with a male PA. I’m really confused by this. This-I guess is a complicated feeling-it really fucking hurts. Why can I  not state my feels? I have a fucking opinion, man. It would seem no one cares these days but, shoot, why the fuck is everything so dumb right now? The guy we hired was mine and Bear’s choice. A very long, hard-fight, of a choice. Arguing for days with tears and she didn’t even ask or anything. It was straight-up “I am the adult and you are the child and I said no” Last I  checked I’m not chattel.. Disability rights and women’s right’s stand firm so WTF? At this time Ry and I had already been fighting more than preferred because… I’m NOT a child. When the state issue happened I went Zelda Fitzgerald; my first response was to run away and Ry wouldn’t let me. His argument being I was an adult with a husband and Audrey and that wasn’t real nice, so if Ry is over here telling me I can’t run away because I’m an adult but this lady wants to treat me like a child I literally do not know what to do but listen to Britney Spears’ “I’m not a girl, Not yet a woman” and cry.

*Further information unveils that “the company” called a previous PA to get her input on our new PA because we clearly cannot be trusted as the children we are.

Then there’s this gem- I liked our case manager a lot. I felt like she really had mine and Ryan’s back. She totally failed us at the end of last year when our paperwork didn’t go through so the State stopped paying for our PAs but people fuck up and Bear and I are bulletproof so it was no biggie. But now she’s acting like she’s doing her job when in reality it’s making things 20 times more stressful on us because she’s super closed minded and it’s like I’m sorry but you suck at life.

Has she literally never been in the hospital? My god. To the gynecologist?

I was reading an article the other day about how your internet’s WIFI becomes disabled. When we disable our internet does that mean it is less able or does it mean it is prevented from functioning?

 

My main PA is a girl and my best friend in Georgia. The other day I had had IVIG, which always makes me extremely fatigued and just sick feeling; on top of that I had a cold. I don’t do well with colds. The weekend of my IVIG treatment, I laid in bed for many hours watching documentary after documentary on who knows what. We had had the nephews over to play outside with the neighbors while I camped out in bed.

Unfortunately, I totally forgot my house existed. The nephews and the wheelchairs tracked dirt in and I forgot to notice. The next day was Monday. My PA had had the weekend off. I used this time to recuperate- because when she’s around we are constantly organizing something in my house, when she came back to work I noticed the floor but to me it wasn’t horribly bad. I was still very sick and didn’t have much patience and we needed groceries, so it was the perfect time for my PA to go to the store so I could be sick and impatient alone. At 11A.M. on Monday Morning without my consent our male PA and two workers from “the company” came into my home. “The Company” was nice enough to bring the male PA the paperwork to continue the application process to MY home. I am difficult and I really hate bullshit and injustice. I need to understand people are trying, but sometimes I explode on really good people if they aren’t being their best.

The workers from “the company” and I would not like to have tea together. If you get my drift. They came into my home uninvited, without consent and upset Audrey, who I had to deal with all day thanks to that. My PA and I were in the midst of a crockpot recipe-I was totally making up and trying to concentrate on and IV fog brain was already making that like a Calculus final- and pretty sure I ruined it but Bear liked it (he said) then after I made the dinner I was going to write and that couldn’t happen. I really don’t like my plans being fucked with. My PA had to leave at 1130AM to get her daughter from school that day (single mom’s!!!!Greatest women on Earth) and I get 4 hours in the morning of state funded caregiving time so my PA and I worked out with our schedules how she could work best for me for 4 hours. On Monday she was being pleasant and saying how she was about to leave to go get her daughter when one of the worker’s starts saying, “Well, you need to clean-up first. Sweep”

I was pretty offended but understood. It’s the worker’s job to make sure the client isn’t being taken advantage of but I’m lucid. No one tells my PA what to do but me, sometimes Ry. It’s my fucking house. No one tells me what to do with my house. My mom has even stopped trying that! I am very possessive. I am Gollum and my life is my precious.  After my PA left, the workers continued to talk aloud about how messy my home was and how my PA did not need to leave at 1130AM when she is scheduled until noon. Unfortunately, I understand their point of view entirely, but unfortunately they were assholes and didn’t state their pov. nicely and I needed to fight for justice. I felt so much injustice was happening at that moment.

It’s my home. My PA. Mine.

I was not the happiest person ever after they left. I was still brewing with what laws I should have threatened them with and Audrey was following behind me as close as possible, while nervously vomitting when my PA had texted me about how rude they were to her. My PA knows my difficulty level. She does what I tell her to and not what anyone else says. She felt very disrespected by the workers because my PA knows what she needs to do and when and always does it but since I got reprimanded, it was as if I didn’t exist and she only needed to take orders from “the company”-everyone felt thoroughly disrespected. My PA sent an email stating that fact. In it she defended the lucidity of Ryan and I.

This…This happens everyday and I don’t know. My PA in my opinion is my best friend. She was here. She witnessed the bullshit that had just occurred. The situation greatly affected her. In Bear’s opinion she is another “walkie” trying to defend us because we can’t defend ourselves. Bear was upset when he first read the email-suggesting she was acting just like “the company.” After awhile he came to the conclusion that my PA isn’t another “walkie.” That’s my PA. We have a really strong friendship so even if only one of us got disrespected the result would be the same. It doesn’t matter “walkie” or not. This gut-reaction was had so much before I formed bonds with Ryan’s family and it’s a very complicated, weird thing. I’m sorry.

 

They seriously make me act like a child…”It’s mine”

I’m 3

Society disables the disabled. Lucky ones fight it. I am sorry but you’re lucky. It is tiring.

But luck be a lady tonight.

*the dryer broke today. It took a week. I totally wasn’t expecting it that quick

I’m totally getting the apartment a clothesline.

Keep fighting lucky loves!

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