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My Parents are Dead and My Sister is Disabled

:emotionalhooligan:

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

Goddamn. These situations really tug at my heart strings…

(Source: )

emotionalhooligan:

nyanmarumori:

Image source: Dragon’s Crown WikiI started playing Dragon’s Crown. Great game, stupid design. And I’m actually playing with the sorceress-character, because thought I’d try something other than a tank (which is what I usually play as). So I got treated to two hours of bouncing breasts today. Apparently you can grope NPCs in the game. Yeah. Um. I also agree very much with Jason Schreier in his article about Dragon’s Crown. Too much sexism is never good for anyone.

"Some have pointed out that the dwarf character—a shirtless warrior with disproportionate muscles—is just as sexualized and over-exaggerated as the sorceress. That’s true. He’s also straight out of a straight male power fantasy, tailored for men just like the sorceress’s skimpy clothing and ridiculously jiggly breasts.”
I can take most big tits but honestly, these AND the disproportionate muscles were distracting as fuck. It’s a bit of a bummer really, because I like Vanillaware’s designs - my favorites so far are the ones done for Odin’s Sphere - but when I comment more on a character’s appearance over game play there’s probably a problem.



Oh man… I can’t believe she’s not wearing socks. That’s got to chafe.

Actually, I love the voice actress who does this girl. She was Chie in Persona 4 as well. She was one of the few English voice actresses that made me want to hear the English version of that game (Persona)  over the Japanese version. 

ANYWAY, she had a few things to say on this topic which I whole-heartedly agree with: 
http://erinfitzvo.com/are-bosoms-in-video-games-offending-you/
emotionalhooligan:

nyanmarumori:

Image source: Dragon’s Crown WikiI started playing Dragon’s Crown. Great game, stupid design. And I’m actually playing with the sorceress-character, because thought I’d try something other than a tank (which is what I usually play as). So I got treated to two hours of bouncing breasts today. Apparently you can grope NPCs in the game. Yeah. Um. I also agree very much with Jason Schreier in his article about Dragon’s Crown. Too much sexism is never good for anyone.

"Some have pointed out that the dwarf character—a shirtless warrior with disproportionate muscles—is just as sexualized and over-exaggerated as the sorceress. That’s true. He’s also straight out of a straight male power fantasy, tailored for men just like the sorceress’s skimpy clothing and ridiculously jiggly breasts.”
I can take most big tits but honestly, these AND the disproportionate muscles were distracting as fuck. It’s a bit of a bummer really, because I like Vanillaware’s designs - my favorites so far are the ones done for Odin’s Sphere - but when I comment more on a character’s appearance over game play there’s probably a problem.



Oh man… I can’t believe she’s not wearing socks. That’s got to chafe.

Actually, I love the voice actress who does this girl. She was Chie in Persona 4 as well. She was one of the few English voice actresses that made me want to hear the English version of that game (Persona)  over the Japanese version. 

ANYWAY, she had a few things to say on this topic which I whole-heartedly agree with: 
http://erinfitzvo.com/are-bosoms-in-video-games-offending-you/

emotionalhooligan:

nyanmarumori:

Image source: Dragon’s Crown Wiki
I started playing Dragon’s Crown. Great game, stupid design. And I’m actually playing with the sorceress-character, because thought I’d try something other than a tank (which is what I usually play as). So I got treated to two hours of bouncing breasts today.

Apparently you can grope NPCs in the game. Yeah. Um. I also agree very much with Jason Schreier in his article about Dragon’s Crown. Too much sexism is never good for anyone.

"Some have pointed out that the dwarf character—a shirtless warrior with disproportionate muscles—is just as sexualized and over-exaggerated as the sorceress. That’s true. He’s also straight out of a straight male power fantasy, tailored for men just like the sorceress’s skimpy clothing and ridiculously jiggly breasts.”

I can take most big tits but honestly, these AND the disproportionate muscles were distracting as fuck. It’s a bit of a bummer really, because I like Vanillaware’s designs - my favorites so far are the ones done for Odin’s Sphere - but when I comment more on a character’s appearance over game play there’s probably a problem.



Oh man… I can’t believe she’s not wearing socks. That’s got to chafe.

Actually, I love the voice actress who does this girl. She was Chie in Persona 4 as well. She was one of the few English voice actresses that made me want to hear the English version of that game (Persona) over the Japanese version.

ANYWAY, she had a few things to say on this topic which I whole-heartedly agree with: http://erinfitzvo.com/are-bosoms-in-video-games-offending-you/

Dad on cultural appropriation. (conversation was in Spanish)

  • Me:

    Hey Dad, I have a question

  • Dad:

    Alright, lets see if it's within my reach

  • Me:

    What do you think of cultural appropriation?

  • Dad:

    what?

  • Me:

    Cultural appropriation.

  • Dad:

    I think you mean acculturation.

  • Me:

    yeah, I do. But I was using the term the Social Justice Morons use.

  • Dad:

    It's a necessary part of being human, you can't just keep the one culture all of your life!

  • Me:

    So how offended would you be if a bunch of white people started speaking Spanish?

  • Dad:

    Offended? I would be glad, at least they speak my language!

  • Me:

    What if a white guy made tacos?

  • Dad:

    what kind of taco? why would I be offended? Did I invent it and patent it?

  • Me:

    Nope, just an ordinary taco made by a white guy.

  • Dad:

    Why would I be offended? It would like a German guy getting offended because I grilled a hamburger

  • Me:

    Well, because it's a Mexican food, it was discovered and is integral to Mexican culture. What if a white person doesn't respect the history of the taco.

  • Dad:

    When the woman who first created a taco did that, did the Angels descend from heaven with a deed and a copyright form signed by God informing us that only Mexicans can make it?

  • Me:

    Nope. It's just a taco.

  • Dad:

    Precisely, it's a taco, eat it. I would actually be happy for that white guy, tacos are pretty good.

  • Me:

    What if Tyler wanted to celebrate El Dia de Los Muertos? On his own?

  • Dad:

    Tell him to pace himself the skulls are made of pure sugar.

  • Me:

    What if he wanted to celebrate El Dia de la Independencia?

  • Dad:

    Culture is not something handed to you by God to protect and nurse, it's just something that happens to you, and when you think you have it figured out, it changes. That's what cultures do. They change. You know what these people are trying to do, right?

  • Me:

    Yeah,

  • Dad:

    They want us all to hate each other and not speak to each other. They want us Mexicans in Mexico, Afro-Americans in Africa, Asians in Asia and none of us talking or being nice to each other. With no resources, no trade, no rights, and only the one language that only we're allowed to speak so that we can't communicate with anyone outside. And that's after they'd kill off all the white people. They're like the KKK, if the KKK didn't have balls.

  • Me:

    I arrived at the same conclusion.

  • Dad:

    Make yourself a coffee.

  • Dad:

    Just be sure it's Mexican *laughs*

PLEASE READ.

I’ve been thinking about telling the story of what happened to me and why I left my 13 year relationship. I’m in a new relationship now and I feel a lot of the emotional distress I experience weighs heavily on us - though he says he can take it, I’d prefer he didn’t have to.

Tumblr seems (to me) to be a suitably anonymous place to bare my soul while not completely isolating myself. I was able to deny a lot of what happened to me because I never told anyone, so in a way, it didn’t seem real.

If you’re interested in hearing my story, comment here. Please let me know whether you’d like to hear the whole story or the short story.


The pic is an old sketch I did of my characters Magenta and Cyan in my ‘comic’ style.

FOR CALLIE-CHAN

sugar-soul:

*gasp* Friend is lonely?

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on my way friend… woah wait…yes

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I dance to maek you happy

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did friend like dance?

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I shall battle the sadness!

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friend isso pretty, she shouldnt feel sad or lonely

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lots of people love friend!  shes funny

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I give huggles to friend

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when friend is happy, we are happy

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remember to smile okay? Smile as you read this!

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you are not alone friend. I am here. Be happy.

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SHIBE OUT!

asphyxialemieux asked:

G, J, and U

OMG you made me have to search, QQ.

G. Would you rather burn or freeze to death?

Freeze, hands down. I don’t even like hot weather. Freezing burns, but your body generally shuts down and falls asleep instead of going into some sort of horrifically psychotic shock episode with the screaming and the flesh melting. However, most people who die in house fires and such are not burned to death, but suffocated by the smoke.

J. Could you live without having sex ever (again) in exchange for eternal youth?

See: Aria’s Answer.

U. If you were old enough and not in a situation where it would be inappropriate, would you sleep with one of your (past) school teachers/professors?

I never really liked any of my teachers that way. I had a 12th Grade History teacher that really dug Philosophy and spoke German and I really respected him for that, but respect and attraction are totally different things.

ariakitty asked:

C. Have you ever looked down on someone because you thought your religious views were superior? O. Would you rather spend one year with your one true love just to never see them again or the rest of your life with second best?

C. Have you ever looked down on someone because you thought your religious views were superior?

How did I know you would ask that? X3 That one’s best answered with the question: How crazy were their religious views? As far as the general population goes, no, not really.

O. Would you rather spend one year with your one true love just to never see them again or the rest of your life with second best?

And wow, I don’t even know. Can I do both? I think the “rest of your life scenario” is probably the best option because you don’t have to suffer the pain and loss of the first.

lol~ I agree with Jess these are interesting. Feel free to ask me any of them if you want to!

  • A. If you could get away with one murder in your lifetime without any legal, social, or emotional repercussions, would you kill someone?

  • B. What is your first thought when you receive a message on Tumblr, are you excited for the idea of someone from potentially the other side of the world wanting to talk to you or fearful that someone will criticize you?

  • C. Have you ever looked down on someone because you thought your religious views were superior?

  • D. Would you rather know everything the universe has to offer but in exchange lose all emotions or remain the way you are now?

  • E. If you could live and be healthy without sleeping or eating/drinking, which would you cut out of your life?

  • F. If you could take on the exact body and form of anyone else on Earth, who would it be?

  • G. Would you rather burn or freeze to death?

  • H. If it meant it would solve all world hunger, war, disease and bigotry, would you spend the rest of eternity in Hell?

  • I. Was the first crush in your life something you had or something someone had on you?

  • J. Could you live without having sex ever (again) in exchange for eternal youth?

  • K. Have you ever watched a full length pornographic movie?

  • L. The Beatles or The Rolling Stones?

  • M. If you could have the ability to manipulate matter or energy, which would you choose?

  • N. What was the worst nightmare you ever had?

  • O. Would you rather spend one year with your one true love just to never see them again or the rest of your life with second best?

  • P. All the sequels/remakes/adaptations/rip-offs in movies nowadays, good or bad?

  • Q. Would you rather be dirt poor and emotionally fulfilled in life or be rich beyond imagination and emotionally dissatisfied for life?

  • R. Do you have any (secret) feelings of bigotry to any group of people?

  • S. Would you rather be the only person in the world that can read minds or have everyone else in the world be able to read minds except for your own?

  • T. If everyone in the world would automatically only know one language, which language would you choose?

  • U. If you were old enough and not in a situation where it would be inappropriate, would you sleep with one of your (past) school teachers/professors?

  • V. A world without religion, good, bad, neutral?

  • W. The men's rights movement, legitimate cause or laughable, and why?

  • X. You can eliminate one of your five senses to substantially strengthen the others, which one and would you do it?

  • Y. Do looks mean anything to you? Don't lie, could you fall in love with someone you thought was ugly?

  • Z. Can you understand the mindset and logic used by the opposite spiritual opinion? An atheist understanding the belief in a higher power and vice versa.

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