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airows:

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alwaysalwaysoffkey:

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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

I don’t know about this “signal boost” thing, but we can definitely learn a lot from this girl. 

Currently reading her blogposts.. : ) 

This is Jeanie, my good friend! I completed my master’s program with her :))

(Source: )

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fuckyeahthatsgay:

I will be that grandmother some day.

fuckyeahthatsgay:

I will be that grandmother some day.

(Source: fuckeverythingandsociety)

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i12bent:

We lost Nobel Literature Laureate, Nadine Gordimer, known for her anti-Apartheid stance. She died July 13, aged 90…
“Writing is making sense of life. You work your whole life and perhaps you’ve made sense of one small area.”
Photo: David Goldblatt, 1985

i12bent:

We lost Nobel Literature Laureate, Nadine Gordimer, known for her anti-Apartheid stance. She died July 13, aged 90…

“Writing is making sense of life. You work your whole life and perhaps you’ve made sense of one small area.”

Photo: David Goldblatt, 1985

(Source: agooddaytodie)

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mrnickerdoodle:

Seriously though. If you’ve ever experienced the loss of a pet, this will get you.  

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wellthatsadorable:

silumia:

psyfucks:

comfortspringstation:

Kitten rejected by mother and raised by golden retriever

I’m so happy for this little kitty

im cryin a bit

That golden retriever is no dummy. He knows a cute baby kitten brings joy to your life and passing up that opportunity is seriously stupid. Everyone go out and adopt a mom-less cat today, young or old. More cats in your life = a more awesome life.

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gaywrites:

Ian Thorpe, an Olympic champion swimmer who has long denied rumors that he’s gay, officially came out in an interview that’ll be aired tonight in Australia. 

Over the course of the 2000 and 2004 Olympics, Thorpe won five gold medals, three silver, and one bronze, and he’s broken 22 world records over his lifetime. He’s also struggled with depression and substance abuse, but in spite of his challenges is considered one of the best swimmers of his time. 

Out Olympic diver Matthew Mitcham, a fellow Austalian, expressed support for Thorpe and said he hope the public would do so as well, the Telegraph reports. “I can totally understand how difficult this whole process has been for him,” Mitcham said. “I really hope this process gives him some peace and that the media and the public give him the same respect and the same overwhelming support I received in 2008. The Australian public and media have a really wonderful opportunity to set an example for kids who are in Ian’s position.”

Check out the video of the interview at the link above. Congratulations and thank you for your bravery and honesty, Ian. Add this moment to your long list of achievements. 

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humorous:

handpickedhappiness:

thevoxbox:

charlesoberonn:

giftvvrap:

will you marry me = a marriage proposal
will, you, Mary, me = a foursome proposal

Will you, Mary me = Cavewoman Mary helps Will recover from his Amnesia

Will, you marry me. = Will’s time-traveling partner

And people keep trying to tell me that punctuation isn’t important

 

(via bromancing-the-stone)

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menandtheirdogs:

buffythesamoyed:  Road trip with my uncle human!

menandtheirdogs:

buffythesamoyed:  Road trip with my uncle human!

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airows:

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officialtim:

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officialtim:

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(via officialtim)

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brokenponycutiemark:

thelittleheathens:

therabitt:

lightning-st0rm:

pearlmito:

smootymormonhelldream:

stripedsilverfeline:

anti-clerical:

ramirezbundydahmer:

When the Nazi concentration camps were liberated by the Allies, it was a time of great jubilation for the tens of thousands of people incarcerated in them. But an often forgotten fact of this time is that prisoners who happened to be wearing the pink triangle (the Nazis’ way of marking and identifying homosexuals) were forced to serve out the rest of their sentence. This was due to a part of German law simply known as “Paragraph 175” which criminalized homosexuality. The law wasn’t repealed until 1969.

This should be required learning, internationally. 

You need to know this. You need to remember this. This is not something to swept under the carpet nor be forgotten. 
Never. Too many have died for the way they have loved. That needs stop now. 
Make it stop? 

I did a report on this in my World History class my sophomore year of high school. It was incredibly unsettling.

My teacher shown the class this. Mostly everyone in the class felt uncomfortable. 

I have reblogged this in the past, but it is so ironic that it comes across my dash right now. I a currently working as a docent at my city’s Holocaust Education Center (( I say currently because I’ve also done research and translation for them )) and our current exhibit is one on loan from the United States Holocaust Memorial Museum ((USHMM)). This is a little known historical fact that Paragraph 175 was not repealed after the war and those convicted under Nazi laws as a danger to society because they were gay were not released because they had be convicted in a court of law. There was no liberation or justice for them as they weren’t considered criminals, or even victims for that matter. They were criminals who remained persecuted and ostracized and kept on the fringes of society for decades after the war had been won. Paragraph 175 wasn’t actually repealed until 1994. And it was only in May 2002, that the German parliament completed legislation to pardon all homosexuals convicted under Paragraph 175 during the Nazi era. History has forgotten about these men and women — please educate yourselves so this does not happen again. Remember this history. Remember them.

You must remember this!!!

Our History.

Go watch the documentary “Paragraph 175”, where 5 of the survivors who were still alive in 2000 were interviewed.

brokenponycutiemark:

thelittleheathens:

therabitt:

lightning-st0rm:

pearlmito:

smootymormonhelldream:

stripedsilverfeline:

anti-clerical:

ramirezbundydahmer:

When the Nazi concentration camps were liberated by the Allies, it was a time of great jubilation for the tens of thousands of people incarcerated in them. But an often forgotten fact of this time is that prisoners who happened to be wearing the pink triangle (the Nazis’ way of marking and identifying homosexuals) were forced to serve out the rest of their sentence. This was due to a part of German law simply known as “Paragraph 175” which criminalized homosexuality. The law wasn’t repealed until 1969.

This should be required learning, internationally. 

You need to know this. You need to remember this. This is not something to swept under the carpet nor be forgotten. 

Never. Too many have died for the way they have loved. That needs stop now. 

Make it stop

I did a report on this in my World History class my sophomore year of high school. It was incredibly unsettling.

My teacher shown the class this. Mostly everyone in the class felt uncomfortable. 

I have reblogged this in the past, but it is so ironic that it comes across my dash right now. I a currently working as a docent at my city’s Holocaust Education Center (( I say currently because I’ve also done research and translation for them )) and our current exhibit is one on loan from the United States Holocaust Memorial Museum ((USHMM)). This is a little known historical fact that Paragraph 175 was not repealed after the war and those convicted under Nazi laws as a danger to society because they were gay were not released because they had be convicted in a court of law. There was no liberation or justice for them as they weren’t considered criminals, or even victims for that matter. They were criminals who remained persecuted and ostracized and kept on the fringes of society for decades after the war had been won. Paragraph 175 wasn’t actually repealed until 1994. And it was only in May 2002, that the German parliament completed legislation to pardon all homosexuals convicted under Paragraph 175 during the Nazi era. History has forgotten about these men and women — please educate yourselves so this does not happen again. Remember this history. Remember them.

You must remember this!!!

Our History.

Go watch the documentary “Paragraph 175”, where 5 of the survivors who were still alive in 2000 were interviewed.

(via ufocottoncandy)

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(Source: airows)