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08

Jun

My Parents are Dead and My Sister is Disabled

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

(Source: )

12

Mar

laminated-paper:

laminated-paper:

HAVE YOU SEEN THIS MAN?

this is my friend noah. he has been missing for two days of his own volition, and we have no way to contact him. he’s very tall, about 6’3”, missing a front tooth, and has a tattoo of various sided dice across his chest. he could be pretty much anywhere in america at this point. there has been a missing person report filed in texas, so if you see him, contact the authorities to help them out with their search.

but also tell him that he is loved, the bros back home need him, collin, eric, brian, tyler, baxter, jack, fraiser, and cyril NEED him, and he needs to come home.

and for the love of god, boost this.

reblog for the late night. we believe he may be intending to hurt himself, please please boost.

(Source: p-entateuch)

10

Feb

dontbreakveg:

funnywildlife:

A healthy young giraffe called Marius has been shot dead this morning at Copenhagen zoo because it is surplus to requirement, despite offers of re-homing by the UK’s Yorkshire Wildlife Park & others, and despite  online petitions,To top it all up, after killing the innocent giraffe, they turn it into a spectacle by cutting it up in front kids!!!It also turns out that Copenhagen Zoo annually puts to death some 20 to 30 healthy exotic animalsEveryone who is appalled at this story should boycott and raise awareness of Copenhagen Zoo ethics

Address
Roskildevej 32
2000 Frederiksberg
Web
www.zoo.dk
E-mail
zoo@zoo.dk
Phone
+45 7220 0200
You know what to do.

dontbreakveg:

funnywildlife:

A healthy young giraffe called Marius has been shot dead this morning at Copenhagen zoo because it is surplus to requirement, despite offers of re-homing by the UK’s Yorkshire Wildlife Park & others, and despite  online petitions,
To top it all up, after killing the innocent giraffe, they turn it into a spectacle by cutting it up in front kids!!!
It also turns out that Copenhagen Zoo annually puts to death some 20 to 30 healthy exotic animals
Everyone who is appalled at this story should boycott and raise awareness of Copenhagen Zoo ethics

Address

Roskildevej 32

2000 Frederiksberg

Web

www.zoo.dk

E-mail

zoo@zoo.dk

Phone

+45 7220 0200

You know what to do.

04

Jan

tentaclerapper:

cad-y:

awkwardsituationist:

a four man anti poaching team is tasked with guarding the ol pejeta conservancy’s four remaining northern white rhinos. with only eight left, it is the world’s most endangered species. located in the laikipia district of kenya, ol pejeta conservancy is also the largest sanctuary for the black rhino. fewer than four thousand are estimated to remain. 

the rise in asia’s middle class has meant that demand for rhino horn has soared, with prices on the black market exceeding that of gold and cocaine. with an increase in poaching in ol pejeta, the anti poaching team now provides twenty four hour armed protection for the rhinos, and has developed a close relationship with the animals.

poachers will track rhinos from helicopters, darting them from above and then hacking off the horn and part of the face with a chainsaw. the animals are often left to suffer and die. the rhinos seen here were found wandering in unimaginable pain, but with timely veterinary supervision remarkably survived. the rhino in the left of the fourth picture, however, had a four week old calf who, without his mother, subsequently died of dehydration.

to protect the rhinos and deter poachers, veterinarians will remove much of the animal’s horn. the rhino are anesthetized, and suffer no trauma. the horn is not like an elephant’s tusk, and will grow back in a few years. 

2013 is on track to be the deadliest year yet for rhinos. two rhino are slaughtered for their tusks every day on average. photos by and text adapted from brent stirton’s “rhino wars”

Breaks my heart. Humans are such awful things.

These men are heroes and some of the best mankind has to offer
How do I join their cause

22

Dec

09

Nov

ozei:

lushreef:

lushreef:

sa-ltt:

hus-h:

eternify:

flowerbrain:

frankie-et-lola:

…. And so it has begun. Tony Abbott has put the Marine Park Suspension into play, with dredging construction already underway to create Australia’s newest shipping highway, Abbott point, better known as the Great Barrier Reef. Completely disregarding the World Heritage Classification or UNESCO protection, Rinehart is removing 3 MILLION cubic meters of the worlds most diverse largest living organism and ecosystem only to build the largest coal export terminal. We are going to lose one of the worlds most truly precious gems to a temporary and damaging “solution”. The Great Barrier Reef will no longer exist because of Abbotts desire for CSG export income. So please reblog and share this to show your support for saving natures gift to the world. Wake UP Australia, and spread the word.

3 million tonnes of mud will be dredged and dumped in the Great Barrier Reef Marine Park. This will lead to more than 100 million tonnes of greenhouse gases being released into our atmosphere, seriously damaging efforts to tackle climate change. These changes will be irreversible and have extreme consequences on the environment. This is the epitome of corporate greed and monetary gain at the expense of our planet.

god fucking dammit why does he have to do this doesnt he understand ANYTHING jesus im so mad

Abbott is the biggest flog, why is it so god damn difficult for Australia to find a decent prime minister

I really really can’t believe how dumb someone could be let alone our prime minister, and what sores me even more is that we can’t change that for another three years.

This should have HEAPS more notes

SIGN THIS http://savethereef.org.au/ AND REBLOG

sign it ^

ozei:

lushreef:

lushreef:

sa-ltt:

hus-h:

eternify:

flowerbrain:

frankie-et-lola:

…. And so it has begun. Tony Abbott has put the Marine Park Suspension into play, with dredging construction already underway to create Australia’s newest shipping highway, Abbott point, better known as the Great Barrier Reef. Completely disregarding the World Heritage Classification or UNESCO protection, Rinehart is removing 3 MILLION cubic meters of the worlds most diverse largest living organism and ecosystem only to build the largest coal export terminal. We are going to lose one of the worlds most truly precious gems to a temporary and damaging “solution”. The Great Barrier Reef will no longer exist because of Abbotts desire for CSG export income. So please reblog and share this to show your support for saving natures gift to the world. Wake UP Australia, and spread the word.

3 million tonnes of mud will be dredged and dumped in the Great Barrier Reef Marine Park. This will lead to more than 100 million tonnes of greenhouse gases being released into our atmosphere, seriously damaging efforts to tackle climate change. These changes will be irreversible and have extreme consequences on the environment. This is the epitome of corporate greed and monetary gain at the expense of our planet.

god fucking dammit why does he have to do this doesnt he understand ANYTHING jesus im so mad

Abbott is the biggest flog, why is it so god damn difficult for Australia to find a decent prime minister

I really really can’t believe how dumb someone could be let alone our prime minister, and what sores me even more is that we can’t change that for another three years.

This should have HEAPS more notes

SIGN THIS http://savethereef.org.au/ AND REBLOG

sign it ^

11

May

kissykissybangbang:

thesleeping-insomniac:

crucialpitjustification:

okizzle:

bruised-mannequin:

atticusatticus:

sunshinekindlyhere:

I will never shop at that store ever!!!

i thought this was a joke but 

no

and even if it were

it still wouldn’t matter

Spread it around, Tumblr!

I heard about this a while back on Reddit; I still can’t believe it.

The “burning clothes” thing is just the unsurprising cherry on top. Also remember when they fired a woman from one of their stores because she had a prosthetic limb?

What the hell?

it’s getting worse. i really hope this place closes…

(Source: livefitandhealthy)

06

May

touchmypupil:

hokshilato:

girljanitor:

theuppitynegras:

crackerhell:

pinkmarmalade:

crackerhell:

simplyymisha:

Repost.

Only in America: Black boy found beaten to death in a rolled up gym mat, but “no foul play suspected”.
Yeah
welcome to fucking america

Oh, this must be black privilege

boom

HIS PARENTS WERE ARRESTED FOR PROTESTING!

seriously they were arrested for standing in front of the door

reblog the shit out of this.

isn’t that a rapper

touchmypupil:

hokshilato:

girljanitor:

theuppitynegras:

crackerhell:

pinkmarmalade:

crackerhell:

simplyymisha:

Repost.

Only in America: Black boy found beaten to death in a rolled up gym mat, but “no foul play suspected”.

Yeah

welcome to fucking america

Oh, this must be black privilege

boom

HIS PARENTS WERE ARRESTED FOR PROTESTING!

seriously they were arrested for standing in front of the door

reblog the shit out of this.

isn’t that a rapper

16

Apr

asktrickstertrolls:

pugsies:

PLEASE READ. WILL NOT HURT TO AND FORWARD. Kids are putting Drano, tin foil, and a little water in plastic drink bottles and capping it up - leaving it on lawns, in mail boxes, in gardens, on driveways etc. just waiting for you to pick it up intending to put it in the rubbish, but you’ll never make it!!! If the bottle is picked up, and the bottle is shaken even just a little - in about 30 seconds or less it builds up enough gas which then explodes with enough force to remove some your extremities. The liquid that comes out is boiling hot as well. Don’t pick up any plastic bottles that may be lying in your yards or in the gutter, etc. Pay attention to this. A plastic bottle with a cap. A little Drano. A little water. A small piece of foil. Disturb it by moving it; and BOOM!! No fingers left and other serious effects to your face, eyes, etc. Please ensure that everyone that may not have email access are also informed of this.

Snopes confirms.

asktrickstertrolls:

pugsies:

PLEASE READ. WILL NOT HURT TO AND FORWARD.

Kids are putting Drano, tin foil, and a little water in plastic drink bottles
and capping it up - leaving it on lawns, in mail boxes, in gardens, on
driveways etc. just waiting for you to pick it up intending to put it in the
rubbish, but you’ll never make it!!!
If the bottle is picked up, and the bottle is shaken even just a little - in
about 30 seconds or less it builds up enough gas which then explodes with
enough force to remove some your extremities. The liquid that comes out is
boiling hot as well.


Don’t pick up any plastic bottles that may be lying in your yards or in the
gutter, etc.

Pay attention to this. A plastic bottle with a cap. A little Drano. A little
water. A small piece of foil.
Disturb it by moving it; and BOOM!!

No fingers left and other serious effects to your face, eyes, etc.

Please ensure that everyone that may not have email access are also informed
of this.

Snopes confirms.

08

Apr