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June 02 2017

marbear
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Reposted fromlokrund2015 lokrund2015 vianoisetales noisetales
marbear
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Reposted fromlouse louse vianoisetales noisetales

June 01 2017

My Parents are Dead and My Sister is Disabled

jacquez45:

lgbtprolife:

kanalashesa:

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

Repost! This story needs told!

Disabled lives matter. Sooo much. 

this is a great story of love

(also a story of state assholery because what the fuck, california)

but mostly, a great story of love

Reposted frombryandbj bryandbj viawonko wonko
marbear
Libertarianism, by contrast, is a theory of those who find it hard to avoid their taxes, who are too small, incompetent or insufficiently connected to win Iraq-reconstruction contracts, or otherwise chow at the state trough. In its maundering about a mythical ideal-type capitalism, libertarianism betrays its fear of actually existing capitalism, at which it cannot quite succeed. It is a philosophy of capitalist inadequacy.
Floating Utopias - In These Times
Reposted fromlordminx lordminx viawonko wonko
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alunaes:

For anyone who might need this right now ❤️

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onethingconstant:

songbirde108:

mercurialkitty:

emmagrant01:

clevermanka:

youcangofindatree:

moremetalthanyourmom:

Okay but after seeing this I started doing it too and it’s amazing how many men I’ve run into bc they expected me to move

Gotta try it

I work (and walk) on a college campus. I’ve lost count of how many men I’ve smacked shoulders with.

Recently, I was standing outside my son’s classroom waiting to talk to his teacher. I stood on one side of the hallway, not even close to the center. At some point, a man came walking along. I was standing right in his path, but the hallway was empty, so I logically expected him to swerve around me. Instead he kept walking right toward me, got to me, and stopped, as if waiting for me to get out of his way. I didn’t; I just smiled politely at him. He finally walked around me, clearly annoyed that I hadn’t leapt out of his manly path.

Now I’m wishing I’d leapt aside, taken off my jacket and laid it on the floor before him, then bowed deeply and said, “My Liege!”

I also work at a college campus. I smack shoulders sometimes, but I find that if I stare straight ahead and follow the advice below, people get the heck out of the way.

imageimage

Honestly this post changed how I carry myself when walking alone in public, or in a situation where I’m the one leading. People definitely move for the murder gaze.

Confirmed. I once had to rush back inside a convention hall as the con was closing in order to a retrieve a sick friend’s medication, and I didn’t understand why people in the crowd were jumping out of my way (literally—one guy vaulted a table) until I realized I was dressed as the Winter Soldier and doing the Murder Walk because that’s just how I walk in those boots. I got the meds, got out, and made a mental note.

I repeated the experiment later, wearing the boots but otherwise my usual clothing and mimicking the expression I thought I’d had at that moment. People parted like I was Charlton Heston.

I now wear that style of boots whenever possible. I recently had a man do a double-take as I walked by and ask me, politely, where I had served because I “looked like a soldier.” I’m not current or former military. I was wearing a flowy purple peasant top and looked as un-soldierlike as possible.

Moral of the story: wear comfortable shoes, square your shoulders, and walk like you’ve been sent to murder Captain America.

Reposted fromtobold tobold viawonko wonko
marbear

May 31 2017

marbear










Someone in Bulgaria is putting googly eyes on broken street objects
Reposted fromdarksideofthemoon darksideofthemoon viawonko wonko

May 30 2017

marbear
marbear
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Reposted fromoll oll viabananowo bananowo
marbear
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Meanwhile, in Liverpool...
Reposted fromsommteck sommteck viavol vol
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unsettlingstories:

A Forest Service worker photographed a fire burning inside a tree while he’s fighting Western N.C. wildfires. He said there is no filter on the photo, rather, the fire is so hot this is its actual color.

From here.

I think he pissed off a fay…

Reposted frombairnsidhe bairnsidhe viawonko wonko

May 29 2017

marbear
Reposted frommarysia marysia viafabuleux fabuleux
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Reposted fromnarwhalbutts narwhalbutts viabananowo bananowo
marbear
marbear
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unicornsandbutane:

leandraholmes:

boondock-smokes:

kilis-invisible-beard:

I am sorry but I just CAN’T

still my favourite on set story ever

I still can’t believe they used IKEA FURNITURE FOR THE SET DESIGN!!! 

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the Fjellowship of the Ring

Reposted fromGhostraita Ghostraita vialordminx lordminx
marbear







Amazing dress by french creator Sylvie Facon 

j4ckwynand:

Since we apparently need a reminder:

Nonverbal autistics deserve to exist for their own sake, not because other autistics may be verbal.

Autistics who need daily care deserve to exist for their own sake, not because most autistics can live independently.

Autistics with intellectual disabilities deserve to exist for their own sake, not because some autistics are considered geniuses.

Verbal, “gifted,” independent autistics aren’t a consolation prize for putting up with “severely” autistic people.

Autistic people do not need to buy their continued existence with potential Einsteins and Mozarts.

Autistic people deserve to exist in their own right just as they are.

Reposted frommanxx manxx vialordminx lordminx
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Reposted frommanxx manxx vialordminx lordminx
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