darrenisms:

My Parents are Dead and My Sister is Disabled

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

(Source: )

— 16 hours ago with 206113 notes

love-and-bdsm:

asriels:

it genuinely baffles me that men don’t want women in positions of power because “they’re slaves to their hormones/emotions” and yet one of the first lines of defence when it comes to rape cases tends to be “it’s hardly his fault look at what she was wearing how could we expect him to control himself

Gee, it’s almost as if misogyny isn’t based in logic.

(via lettis)

— 17 hours ago with 109660 notes

divawithanunspoiledagenda:

nerdnuggets:

jelliclephantomfaces:

chandraleeschwartz:

six-months-from-never:

*sees broom*

*picks up broom*

"TELL THEM HOW I AM DEFYYYYYYYYYING GRAAAAAVITTYYYY"

*starts sweeping broom sadly*

"There is a castle on a cloud…"

*holds broom horizontally*

"Never need a reason, never need a rhyme. Up on the roof top step in time!"

*sweeps broom angrily*

"IT’S A HARD KNOCK LIFE!"

*begins waltzing with broom* I could have DAAAAANCED all NIIIIIGHT

(via fictional-fiend)

— 18 hours ago with 15588 notes

khaleersula:

teacupnosaucer:

wtttl:

collababortion:

kittydoom:

salon:

We dare you to say we don’t live in a rape culture.

Amazingly, not The Onion:

“[W]e now have young men telling Bloomberg News that they basically view their female peers as rape bombs just waiting to explode and ruin their lives.”

I REPEAT: THIS IS NOT THE ONION

PLANET IS READY FOR MANDOWN CULTURE

MANDOWN MANDOWN MANDOWN MANDOWN

rape

bombs

one more example of how men suck

(via wake-up-flaw-less)

— 18 hours ago with 54818 notes
#literally what the fuck  #whose responsibility is it if not the gender who statistically commits the most rape?  #or you know any human beings with even a shred of decency 

nearly-headless-horseman:

anightvaleintern:

iwishiwaskristenstewartsgf:

briellableu:

beautiesofafrique:

Newborn baby stuns doctors by holding her own bottle (in the UK)

A baby girl has amazed doctors with her ability to hold her own feeding bottle. Two-week-old Ammra was able to grasp her bottle alone just three days after she was born at Queen’s Hospital, Romford in Essex, her mother Onyi Chiedozie said.The 20-year-old, who is using a combination of breast and bottle feeding, said doctors and nurses were stunned by the baby’s ability to master her strong grip so soon after she was born.

Source

Black excellence 

this baby is gonna be a brain surgeon when she’s like 10

For people who are like big deal, she held a cup.

My nephew didn’t hold a bottle till he was like one.  Most babies don’t know how to process gravity or the concept of if you grip the bottle it stays close to you where you can suckle it and if you tilt it back the liquid is accessible and it’s a lot to process for a baby okay.

This baby is way ahead in neuromuscular and cognitive development. She’s one of the xmen probably, it’s really amazing, the equivalent of a baby saying it’s first word at 2 months old ok it’s really amazing

(via lettis)

— 1 day ago with 90735 notes

co-ver:

Video games are great, they let you try your craziest fantasies. For example, on the sims, you can have a job and a house

(via actualpuppydelphine)

— 1 day ago with 49998 notes

gillasue345:

Sometimes I just have to remind myself that Sam didn’t say “Are you into Dick now?” He said “Are you strictly into Dick now?” And boy if that one word doesn’t make all the difference in the world. 

(via fictional-fiend)

— 1 day ago with 4742 notes

dickw0lves:

creepitrevl:

communismkills:

P.S. The real world isn’t going to accommodate you and your “comfort.” When you get off Tumblr, there aren’t any trigger warnings. Wearing a nametag with your “gender identity” on it would be absolutely laughable. You’ll have to learn to be an adult and deal with people without being psychotic and wishing death on them.

Rebloging twice because people should have to read this more than once

SOMEONE SAID IT

(via sympathizewithlinus)

— 2 days ago with 96970 notes