Jumping the shark

aseaofquotes:

Hunter S. Thompson, Fear and Loathing in Las Vegas

aseaofquotes:

Hunter S. Thompson, Fear and Loathing in Las Vegas

(via thedreamystargazer)

My Parents are Dead and My Sister is Disabled

efflam19:

analogplanets:

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

This is so uplifting and heartwarming and I hope with every ounce of me that people start to realize that taking care of disabled (physically, mentally, emotionally) people is not a job that you can half ass. Working in the mental health field, I’ve seen so many people take on jobs with kids with intellectual disabilities because it seems easy and they can just text all day. If you’re caring for the well being of another human life, you should actually look at them, engage with them and well, care for them. Jeanie is an amazing example of families sticking together and fighting the good fight!

I really hope you can have the life of your dreams Jeanie, with Edna by your side. Signal Boost

(Source: , via hereinidaho)

dee-lirious:

How can we not all love this tough, kick-ass woman refusing to be defined by stereotypes and bloody Cosmopolitan?

(Source: stewarter, via touchtheteapot)

daydreamergab:

blithelyblonde:

Always reblog.

they sure as hell do 

(Source: visualpantheon, via justalittlespokenthought)

Feeling quite apt today! 

(Source: nevermindtheb0ll0cks, via justalittlespokenthought)

neutralizing:

catandkitty:

feministbatwoman:

huffingtonpost:

Columbia University Student Will Drag Her Mattress Around Campus Until Her Rapist Is Gone

"I think the act of carrying something that is normally found in our bedroom out into the light is supposed to mirror the way I’ve talked to the media and talked to different news channels, etc," Emma continues in the full video which you can watch here. 

So, I just want to go into HOW MUCH Columbia and the NYPD has failed, and revictimized, Emma Sulkowitz.

In her school hearing, Sulkowitz ” had to explain to the three administrators on the panel how anal rape worked. She told them she had been hit across the face, choked and pinned down, but, she said, one still seemed confused about how it was possible for someone to penetrate her there without lubricant. Sulkowicz said she had to draw them a diagram.”

"Her best friend was meant to be at the hearing; Sulkowicz had chosen her as her one “supporter.” But her friend was kicked out of that role for talking about the case, according to Sulkowicz, in violation of the university’s confidentiality policy. As punishment, her friend was also put on probation and made to write two reflection papers: one from the perspective of Sulkowicz and another from the accused."

FROM THE PERSPECTIVE
OF HER FRIEND’S RAPIST

- Two other women at Columbia have accused this guy of sexual assault/rape. But he’s been found not responsible in all instances, and is still on campus

- When she went to the police, one officer said: “”You invited him into your room. That’s not the legal definition of rape.”

- Another officer told her friends, who came with her: ““For every single rape I’ve had, I’ve had 20 that are total bull——,” he added. “It’s also my type of job to get to the truth. If that means being harsh about it, that’s what I do.”

And that’s.
Why.
People.
Don’t.
REPORT.

I want to set literally everything on fire.

women have a right to a safe education

ruin rapists’ lives

this has been on my dash a couple times now and I’ve seen Emma’s name plastered all over the place, but not the rapist’s, even though it’s been featured on several sites by now

Jean-Paul Nungesser, folks: don’t forget the name of a lowlife, and stay safe

(via justalittlespokenthought)

laughterkey:

Bpardonmewhileipanic:

mordicaifeed:

concernedresidentofbakerstreet:

regencyduchess:

Whilst in Sydney in 1994, a man apparently tries to assassinate Prince Charles. And not a single fuck was given by His Royal Highness.

THEY’RE ALL JUST STARING AND JUDGING

"How rude…this bodyguard just shoved me!"

I want to be this rich and indifferent one day

BUNCH OF FLOOOOOOOWERS

(Source: shewolfofengland, via hereinidaho)

onlylolgifs:

dubbayoo:

“Marina Abramovic and Ulay started an intense love story in the 70s, performing art out of the van they lived in. When they felt the relationship had run its course, they decided to walk the Great Wall of China, each from one end, meeting for one last big hug in the middle and never seeing each other again. at her 2010 MoMa retrospective Marina performed ‘The Artist Is Present’ as part of the show, a minute of silence with each stranger who sat in front of her. Ulay arrived without her knowing it and this is what happened.”

(Source: alifelesslonely, via touchtheteapot)