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.
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.
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.)
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.
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.
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.
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:
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.
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.
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.
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.
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:
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?!
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.
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.
u take a lot of selfies. do u think ur pretty or smoething? ur not
hi there, anon. i didn’t realize i took a lot of selfies. thanks for the info. so, your question was whether i think i’m pretty. you already answered that no, i am not.
and i have to agree, anon. i don’t think i’m pretty bc i’m not.
i always have a double chin.
i constantly look like i haven’t slept in a week bc of my dark circles
and, i always look sunburnt. idfk why
i have this white line across my nose that makeup can’t cover up
i have tons of wrinkles on my forehead. like what the hell? i’m 25
also, it’s the size of fucking texas
i still don’t know how to smile in pictures bc i hate my fucking teeth
my feet are flat. my hips are huge. my boobs are weird. i am covered in stretch marks. my voice is grating. my ears stick out two miles from my head. i am always fucking sweating and i’ve been asked if i was pregnant more times than i can count.
so, you’re right. i’m not pretty. i can’t stand the way i look.
which is why it’s so fucking important that i post “a lot” of selfies. bc, anon, you’d better fucking believe that if i look in the mirror that day and don’t cringe, i’m gonna take a fucking picture to save that tiny little second. and GOD FORBID i show the world that i posses a little self love every once in a fucking while.
TO ANYONE READING THIS: DON’T EVER LET SOMEONE MAKE YOU FEEL ASHAMED FOR LIKING THE WAY YOU LOOK—EVEN IF IT’S JUST FOR A SECOND. IF YOU LOOK NICE, YOU TAKE THAT FUCKING SELFIE AND YOU SHOW IT TO THE GOD DAMN WORLD BC THEY DESERVE TO SEE THE GOD/GODDESS YOU ARE!
that beard finally coming in? go ahead, bro. take a selfie.
you finally got that piercing you’ve been wanting? not really my style, but you’re fucking rocking it. take a selfie.
your boobs look awesome in that shirt? take a selfie.
you finally lose or gain that weight you’ve been working on? take a selfie.
your eyeliner look awesome? your new sunglasses make you look like a celebrity avoiding the paparazzi? you killing that tux? you feel a tiny, rare level of self love? you always on a high level of self love? you just like your face?
TAKE A MOTHAFUCKING SELFIE!
thanks for the question, anon. this one’s for you.
SO HELP ME GOD YOU LITTLE SHITS BETTER USE FAFSA.GOV TO FILL OUT YOUR FUCKING FAFSA.
IF YOU PAY $88 TO FILE YOUR FAFSA AT FAFSA.COM, I WILL SMACK THE DUMB LOOK RIGHT OFF YOUR DAMN FACES. FAFSA.COM IS NOT AFFILIATED WITH THE US DEPARTMENT OF ED. THEY ARE BAD PEOPLE WHO WILL TAKE YOUR MONEY AND CHARGE YOU TO FILL OUT A FREE FORM. A FREE FUCKING FORM. FREE IS THE FIRST WORD IN THE ACRONYM!
“The report finds that targeted violence often has a purpose. Anti-migrant rhetoric in Greece or sectarian violence in India serves to consolidate the power base of extremist organizations. Negative representations of indigenous groups in Guatemala or Uganda may provide justification for further exclusion or eviction from ancestral lands. The impact of hatred may extend beyond discrimination to more visible extremes, as in the Democratic Republic of Congo, where it drives the continuation of inter-ethnic conflicts. In the Central African Republic, hate speech and targeted attacks during 2013 were responsible for fomenting religious violence that has resulted in almost a million people being internally displaced. Hate crimes send a message not only to the individuals targeted, but also to their communities. This is especially evident in violence against minority and indigenous women, with rape and sexual assault employed as a weapon of war or an instrument of oppression to fragment and humiliate entire civilian populations, says MRG. In South Asia, for example, Dalit women are regularly subjected to sexual violence as a result of their lower caste status - often in response to their demands for basic rights.”—Minority Rights Group International : Press releases : Annual survey warns of severe consequences of ignoring global hate crime towards minorities and indigenous peoples (via aboriginalnewswire)
Hi there. I made the animated "I hope you die" GIF. Thanks for reblogging! It is indeed Bette Davis and it's from the film The Little Foxes. She plays a ruthless plantation owner who steps over her sick husband and who outsmarts her scheming brothers to get ahead. I highly recommend it!
Fantastic! :D I don’t remember when I last used the gif, but I’m sorry if I used it without attribution. I’ve never seen The Little Foxes all the way through, only bits and pieces—it sounds great!
yes HELO!!!is birb again, i back with more quest on! what it feel to be raptil with none of the fluffy fethers and no wing to do the fly??? instead have many hard scale and longs tailness that also scaley scaley?? what do with such long tail?
we do a many cool thing. all VERY private hoho not necesearly all SMOOSHY BLAP BLAP times with the lovelygoons, also has to do Hard Work lift e weights and moev about lots of Important Stones.
“Bad and damnable as work under capitalism may be, still worse is the lack of work. Like every commodity, labor power sometimes finds no buyer. The problematic liberty of the worker to choose his master goes hand in hand with the liberty of the capitalist to engage or to dismiss his workers. In the continuous development of capitalism, in the founding of new enterprises and the decline or collapse of old ones, the workers are driven to and fro, are accumulated here, dismissed there. So they must consider it good luck even, when they are allowed to let themselves be exploited. Then they perceive that they are at the mercy of capital. That only with the consent of the masters they have access to the machines that wait for their handling.”—Anton Pannekoek - Workers’ Councils (via commiekinkshamer)
"girls only watch the world cup bc the players are hot" well yeah we have to deal with you obonixous basic ugly ass hobbits everyday i think we deserve some international eye candy every four years fuck off