On May 28th, my sister, Edna, turned 31.
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?!
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.
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.
This made me cry
(Source: , via spiritofgracekelly)
It’s like Marvel is really trying to piss people off, lol.
calling it, whoever the new iron man is they won’t be straight. marvel’s tryna go for the trifecta.
Nothing makes me more pleased than Marvel making Marvel fanboys angry about genuinely good and interesting comic choices.
Marvel is waking up! *dances*
Yea but it’s all at once. Idc they should slow down and ease it in bc people suck.
This flower shaped confetti contains flower seeds that grow into wildflowers. It is hand made and biodegradable so it leaves no waste. Via
This is actually kinda perfect for outdoor weddings omg
casually reblogging this entire tag lol whoop
you could have your wedding in an empty space next to your house and have a garden to commemorate your marriage omg
when they were prepping me for the surgery the nurse put one of those cloth hats over my head to keep the hair out of my face
she said “here’s your party hat”
and i was already trippin balls so I said
and wiggled around on the table like a gleeful slug
i think about this post sometimes and it makes me grin like a dope
Guaranteed basic income to every citizen, whether or not they are employed to ensure their survival and that they live in a dignified, humane way, preventing poverty, illness, homelessness, reducing crime, encouraging higher education and learning vocations as well as helping society become more prosperous as a whole.
Wow. Forget raising the minimum wage. This is much much better idea.
The minimum wage could actually drop if we had basic income.
But Americans would never go for it. Miserably slogging through 12 hour days and having businesses open 24/7 is too engrained in our culture.
"BUT WHERE WILL THE GOVERNMENT GET THE MONEY?" screamed Joe Schmoe, slamming a meaty fist onto the table and getting mouth-froth all over the front of his greying tank top. "You libt*rds all think money grows on TREES!! HAHA!"
"But where will people get the incentive to work?!" Mindy Bindy cried, flapping her hands in front of her face. She’d had a fear of the unemployed lollygagging about ever since she was a child and her mother told her to be afraid of the unemployed lollygagging about. "You think people should get paid for nothing? I work hard for my money!”
"But who will serve me?" grumbled Marty McMoneybags. "Who will make me feel important? Who will do my laundry and cook my food and stand in front of me wearing a plastic smile while I take out all my stress—because I do have a lot of stress, you know, being this rich is stressful—on them?” He paused and straightened out the piles of hundred dollar bills on the desk in front of him, then raised his two watery, outraged eyes up to the Heavens. “Lord, if there are no poor people, how will I know that I’m rich??”
I laughed. This is perfect! Well said!
The thing is, while I’m sure you could scrape up a few people who’d be willing to just float by on a guaranteed minimum income? For most people the choice to work would be a no-brainer. “Hmmm. I can get by on 33k a year, or I can take that part time job and make 48k… enough to move to a better apartment, maybe take the family on vacation. Sold.” Hell, most people would want to work simply because it gives one a sense of dignity and something to do with one’s time. (Speaking as someone who’s been unemployed, on extended sick leave, etc. in her time, the boredom and sense of isolation that comes with not having a job is almost as bad as the humiliation of having to depend on other people for one’s survival.)
And with this system, part-time jobs and “non-skilled” jobs would be much more readily available because nobody would need to work two or three jobs just to stay afloat!
Which would ALSO mean that employers and customers couldn’t shamelessly exploit employees the way they can today, because if losing a job weren’t necessarily a financial disaster, more people would be willing to walk out on jobs where they weren’t being treated with dignity.
And if this also applies to students (and it should) then student loans would become much less of a problem, and fewer people would flunk out of school because of having to juggle studies and work.
Far fewer people would be forced to stay with abusive partners, parents or roommates because they couldn’t afford to move out.
And the thing is, all those people who suddenly had money? They’d be spending it. They’d be getting all the stuff they can’t afford now - new clothes, books, toys, locally-produced food, car repairs - and with each purchase money would flow BACK to the government, because VAT, also income tax.
The unemployed and/or disabled wouldn’t need special support any more - which would also mean the government could fire however many admins who are currently engaged in humiliating - *cough* making sure those people aren’t getting money they don’t deserve. Same for medical benefits and pensions. And I’m no legal scholar, but I somehow imagine less financial desperation would lead to less petty crime, and hence less need for police and security everywhere?
TL;DR Doomie thinks this is a good idea, laughs at those who protest.
reblogging for more top commentary
They tried something like this out in Canada as a sort of social experiment, called Mincome. What they found was that, on the whole, people continued to work about as much as they did before. Only new mothers and teenagers worked substantially less hours.
But wait, there’s more. Because parents were spending just a little more time at home and involved with their families, test scores increased. Because teens didn’t have to work to support their families, drop-out rates decreased. Crime rates, hospital visits, psychiatric hospitalizations and domestic abuse rates all dropped, as well. More adults pursued higher education. Those who continued to work reported more job flexibility and more opportunity to choose employment they preferred.
Basically, now you can go prove to your asshole family members that society won’t collapse without poor people for you to feel better than.
The picture is awesome, but read the commentary, that’s what I’m reblogging for.
Here’s a good rundown of earth history. I’ve been finding myself reading into earlier geologic time periods out of sheer fascination.
This is amazing.
There’s a really great documentary, “a history of planet earth” that walks you through it and it’s fascinating. The Cambrian explosion was neat as shit.
I love the way that the Quaternary period has both humans and sabre tooth cats as a hazard. it makes you realize how much can change over geologic timescales.