the x and v from a to z

Ask me anything   Submit   Alexa. 27 years old, Latina, queer, feminist, slut, prude, writer, corporate slave, a soft voice and a violent heart.

My Parents are Dead and My Sister is Disabled →

fourlittlebees:

congalineofdurin:

cockismybusiness:

team—wolverine:

therealbarbielifts:

eisforedna:

On May 28th, my sister, Edna, turned 31.

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Her mental age is about three years old. She loves Winnie the Pooh, Beauty & the Beast, and Sesame Street. Even though the below picture is unconvincing. 

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Edna and “Cookie.” I think she was trying to play it cool. 

My name is Jeanie. I’m Edna’s younger sister. I’m also her guardian and caregiver. 

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That’s me on the left. (Hey, you never know. After a year of writing a blog about online dating - Jeanie Does the Internet - I’ve come to learn that there are A LOT of fools on the internet.) 

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ANYWAY, I’m not “doing the internet” anymore. I’m taking care of Edna full-time, after completing my MFA in Writing for Screen & Television at USC.

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May 16, 2014. I wanted a picture. Edna wanted breakfast.

In case you’re wondering where our parents are, they’re dead. Our mom died of breast cancer when she was just 33. 

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Us with mom before she died. (Obviously.)

As for our dad, he peaced-out around the time my mom got sick. His loss - we’re awesome. 

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Here we are being awesome at the beach. Pushing a wheelchair in the sand? Not so awesome. 

In case you’re wondering “What’s wrong?” with my sister - as a stranger once asked me on the street  -  NOTHING. Yes, Edna has a rare form of epilepsy - Lennox-Gastaut syndrome - but I don’t know if that’s anymore “wrong” than people who don’t have manners. 

Basically, Edna was born “normal,” and started having seizures as a baby. They eventually got so bad that they cut off the oxygen to her brain, causing her to be mentally disabled. Or impaired. Or intellectually disabled. Or whatever you want to call it - except “retarded,” because in 2010, President Obama signed Rosa’s Law into effect, replacing that word with “intellectually impaired.” 

Which is cool and all, but services for the disabled and the people who care for them are SEVERELY LACKING. Also, there’s a bunch of people working in taxpayer-funded positions who are supposed to help families like us, but don’t. (Big surprise, I know.) They just fill out paperwork (whenever they feel like it) with asinine statements like this: 

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YUP. I transport my sister down the stairs in her wheelchair, because that is not only safe, but TOTALLY PRACTICAL. Why doesn’t everyone in a wheelchair just take the stairs, for God’s sake? Stop being so lazy, PEOPLE WITHOUT WORKING LEGS! 

But, as it says above, Edna’s legs do work. Whether or not she wants them to, is another story. 

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Edna refusing to go inside. 

These are the stairs that I have to carry her up - by myself - on a daily basis. That is, until one of my legs break and both of us are just sitting at the bottom of the stairs, helpless. 

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For six months, I have begged - BEGGED - the State of California to help my sister, which they are required by law - The Lanterman Act specifically - to do so. But they’ve told me “these things take time” and that I “need to amend my expectations.” (That was said to me when I refused to place Edna at AN ALL-MALE CARE FACILITY. Because yes, that was an “option” that was offered to me.) 

Prior to Edna moving in with me in my one-bedroom apartment, she was living with her amazing caregiver, Gaby, back in Tucson, where we went to high school and I did my undergrad. Edna’s reppin’ the Wildcats below. 

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But back in November, Gaby also died from breast cancer. (FUCK YOU, BREAST CANCER!) This picture was taken a month before she died. She never even told me she was sick because she didn’t want me to worry. 

By the way, we were raised by our grandma. Edna and her were very close.

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She’s dead, too. Surprise.

She died when I was 20 and Edna was 21. That’s when I became Edna’s legal guardian and Gaby stepped into the picture to help me out with Edna. 

So, six months ago, after Gaby died, I moved Edna to California, where I tried to get the folks over at The Frank D. Lanterman Regional Center to help me. I’ve told them I’m worried about our safety - that one of us could get hurt on the stairs -  I’ve told them I can’t afford to pay the private babysitters $15/hour because the ones social services sent me who make $9/hour were unreliable (they didn’t show up on time or at all so I could get to school and work), untrustworthy (one of them let Edna go to the bathroom in the kitchen and then took her into the bathroom because “that what I thought I was supposed to do.”) 

But the people over at the FLRC don’t return my calls, they don’t file the paperwork on time - and the first caseworker that was assigned to us actually LAUGHED AT my sister when he came to our home to evaluate her. When I reported him to his supervisor, she told me, “That’s just [insert name of said jackass].” 

He was one of the two caseworkers that contributed to the report I mentioned above, which also included this: 

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So let me get this straight - I have to feed, bathe, dress and help Edna in the bathroom and you can’t deduce whether or not she is able to vote? What in the fuck?!

Now I realize I seem angry. And you can bet your balls I am. I’m also sad. Sad for those who don’t have family to stick up from them and who waste away God knows where, monitored by no one. Or monitored by people who physically and sexually assault them

I’m also sad for the caregivers who are SO EXHAUSTED - trying to take care of their loved ones - while also trying to take care of themselves and battling a system that is supposed to help, but does nothing of the sort. And I know a lot of people give up. They let their dreams, their marriages, their friendships slide. All while trying not to resent the very person you’re doing it all for.

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Edna wanted to sit next to me the other day while I was writing. Clearly, she’s not impressed. 

Here’s the thing: I REFUSE TO GIVE UP. I’M NOT GIVING UP ON HER OR MYSELF. I’m going to pursue my dreams while taking care of her, AND while ensuring that the people paid to do their jobs ACTUALLY do them.

That’s where you come in. I need you to help me get my story out there. Because I know I’m not alone in this. I want to connect with families who are in similar situations and also show people who have no idea what it’s like to care for someone with a disability (or even a loved one who is sick) that it can be rewarding. Super fucking hard. Exhausting. Painful. Isolating. But, rewarding. 

I’m going to get help for my sister - and others. My hope is that by sharing our story, I can bring awareness to the lack of services and help for the disabled. 

Thank you, 

Jeanie 

Facebook:  facebook.com/eisforedna

Twitter: @EisforEdna 

This made me cry

SIGNAL BOOST

STOP SCROLLING. THIS PERSON ISN’T ASKING FOR MONEY AND THIS POST WON’T MAKE YOU SAD.

This is a really uplifting and inspirational story of a family sticking by each other and making things work despite a whole lot of shit

They just want to find other people in the same position they are, for a sense of community and to feel like they aren’t alone.

I know out of all of you, some of you have followers who are living with and taking care of intellectually or emotionally disabled family members, and this lovely and unbreakable pair of sisters need to find them.

SIGNAL BOOOOOOOOOST

HUGE signal boost. My cousin is severely impaired and my aunt was lucky enough to remarry to a guy who is a living saint. People don’t realize HOW MUCH caregivers do, and HOW MUCH MONEY THEY SAVE taxpayers by caring. But the BS that people have to go through in order to get help when we think nothing of letting our representative spend billions on crap that no one needs to benefit their cronies’ pocketbooks is OBSCENE.

Jeanie, you are amazing. That you share my aunt’s name is no coincidence in my mind. I hope you and Edna get the help you need and DESERVE.

(Source: )

— 3 hours ago with 194533 notes

the-goddamazon:

pardonmewhileipanic:

red3blog:

pardonmewhileipanic:

notcuddles:

nesft:

Crow: CROW YES!

It’s actually impossible to measure how many fucks a corvid give because there is no device sensitive enough to register such a tiny amount.

science/animal side of tumblr… explain to me the birb thing

Tail Pulling is a behavior noted in many corvids. The practical application is to create a distraction that will allow the birb to make off with the target’s food. Imagine being in the lunch room and a large fellow has a Twinkie you covet. You can’t just take it from him because he’ll defend his Twinkie. But if you thwap him on the back of his neck and then dash around to snag the Twinkie while he investigates, you stand a decent chance of enjoying spongey goodness. This is basically that in birb form.

Except corvids don’t only do this as a distraction. Sometimes they seem to just being doing it to mess with other animals/birbs. But to use my lunch room analogy, there are times you might thwap someone sneakily on the back of the neck just for amusement. Primates exhibit behavior that appears to be just be annoying other animals for amusement. Given how intelligent crows are, its not unlikely that this is a manifestation of an innate desire to just fuck with someone else for the fun of it. Such as this from the link above:

THANK YOU FOR THE BIRB KNOWLEDGE

Lmfaooooo assholes

(Source: yinqors)

— 7 hours ago with 13472 notes
#corvids 

professorfangirl:

greywind-s:

literature meme || {1/2} genres
→ Absurdist fiction

 Absurdist fiction is a genre of literature, most often employed in novels, plays or poems, that focuses on the experiences of characters in a situation where they cannot find any inherent purpose in life, most often represented by ultimately meaningless actions and events. Common elements in absurdist fiction include satire, dark humour, incongruity, the abasement of reason, and controversy regarding the philosophical condition of being “nothing.”Works of absurdist fiction often explore agnostic or nihilistic topics.

While a great deal of absurdist fiction may be humorous or irrational in nature, the hallmark of the genre is neither comedy nor nonsense, but rather, the study of human behavior under circumstances (whether realistic or fantastical) that appear to be purposeless and philosophically absurd. Absurdist fiction posits little judgment about characters or their actions; that task is left to the reader. Also, the “moral” of the story is generally not explicit, and the themes or characters’ realizations—if any —are often ambiguous in nature. Additionally, unlike many other forms of fiction, absurdist works will not necessarily have a traditional plot structure (i.e., rising action, climax, falling action, etc.).

 

— 7 hours ago with 459 notes
#absurdism  #reference 

bonnienoise replied to your post “i just realized maggie is supposed to be twenty five. dudes, larissa…”

wait alex mack is on pll wtf is my problem i need to get back on that jfc

where’d you leave off? season 3 is really enjoyable, there’s spencer having a total breakdown and mona being effortlessly conniving and all sorts of shenanigans. i plowed through most of it this weekend.

— 9 hours ago
#bonnienoise  #pretty little liars 

writeroost:

oswinco:

Hey instead of saying that men or white people are the problem how about we say sexists and racists are the problem (◕‿◕✿)

How about instead of picking out individuals as the problem we admit that entire cultural narratives are the problem and if you use excuses to avoid analysing how you play a part in perpetuating that culture (either intentionally or unintentionally) you are part of the problem (◕‿◕✿)

(Source: chickenlesbian, via maedaeparade)

— 17 hours ago with 20845 notes