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
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.
Reblog, retweet, repost, re-everything!
(Source: , via beckyblackbooks)
WHAT KIND OF AD IS THIS
A REALLY EFFECTIVE ONE SAVE THE FROGSSAVE THE GODDAMN FROGS
SAVE THE FROGS HOLY SHIT SAVE THE FROGS
Devoting my life from this moment on to saving the frogs.
SAVE ALL THE FUCKING FROGS FOR THE LOVE OF GOD
(Last updated May 5, 2014)
Americans love Mexican food. We consume nachos, tacos, burritos, tortas, enchiladas, tamales and anything resembling Mexican in enormous quantities. We love Mexican beverages, happily knocking back huge amounts of tequila, mezcal and Mexican beer every year. We love Mexican people—as we sure…
Charles and Erik finally reconcile
I’d watch that movie.
Always reblog these amazing people.
Best joke of the night! Thank you TINA Fey! #tinafey #goldenglobes #leonardodicaprio #accurate
OH MY GOD
OMG, HE’S HELPING HIM BACK INTO THE OCEAN
i officially like animals more than people
(Source: , via angelmcastillo)
Despair turned to anger as those responsible weren’t held accountable. The warehouse that burned down was owned by the government, and the daycare center itself was guilty of some palm-greasing to skate by some regulations in order to operate (for example, not enough fire exits), so people expected some degree of accountability. As corrupt as Mexico is, those responsible for a tragedy of this magnitude where 49 innocent children lost their lives wouldn’t walk away unscathed, would they? Well, it turns out they did. So far, the only people who have been arrested for this horrific event are people whose only mistake was doing their job - low level types who had nothing to do with the bribes and payoffs that led to this daycare center operating when it should’ve been shut down a long time ago.
Even though this happened more than 2 years ago, it is still an extremely sensitive subject here in town. We are all angry and sad that something like that happened here, and that the government covered it up as only they can here in Mexico. The assholes who are truly responsible for this are nowhere to be found, people know who they are, but they’re free to go on about their lives with complete impunity. I hope their dreams are haunted though. I’m sure none of them wanted this to happen of course, but they are responsible and should be held accountable for being fucking greedy.
A few days ago, I was looking on my Facebook feed and saw that a friend had posted a video of a mexican comedian doing his act with the title: “FUCK YOU PLATANITO YOU CAN’T JOKE ABOUT THAT, GO TO HELL, ARRGH” (or something like that).
"Platanito" means "little banana" and is a character created by a Mexican actor who tells filthy jokes on stage in a clown costume. (When I first saw this guy on TV I immediately thought of Yukko the Clown and briefly pondered if Yukko could sue him, but then realized that I was thinking of Yukko the Clown for some fucking reason and immediately stopped thinking about Yukko the fucking Clown.) This guy is known for telling dirty jokes, and he hosts a very popular talk show (don’t ask*) on our version of MTV where all he does is hang around chicks in thongs and tell dirty jokes, occasionally having a guest on to interview. So the dude is known for being dirty and out of control.
Pictured: Dirty clown.
When I clicked on the aforementioned video, it was a clip of one of Platanito’s live shows. It wasn’t from his TV show, and it looks like maybe 2 or 3 hundred people were in the audience. He’s rambling on his rapid-fire type of way, and he throws in that Michael Jackson died because he was anxious to get to heaven since a daycare center had burned down in Hermosillo. He went on to say that where the daycare center had been replaced by a new joint called “Kentucky Fried Children,” and that was it. The whole clip lasted less than a minute.
But what a shitstorm it caused.
My initial reaction was anger. There are lines that you shouldn’t cross, Platanito! Fuck you! How dare you joke about this horrific event?! I immediately shared the video on my Facebook Timeline with the caption: “Asshole” and watched as it made the rounds. The twitterverse (fuck that word) exploded with anti-Platanito hashtags, and it seemed everybody from Sonora and Mexico was enraged. Images were made where Platanito’s head was put in the crossfires of a rifle, with the caption: “Platanito, Sonora welcomes you” and I’m sure a lot of similar stuff was created as well. People were posting all kind of crazy shit on Facebook, threatening everything from boycotts to protests to kicking the dude’s ass to killing him. Of course, all of this was on Facebook and Twitter, so take it for what it’s worth.
Honestly, I was shocked by my own visceral reaction. I was very angry. I was fucking incensed. The day that fire broke out, I was on my way out of town (it was a Friday) so I didn’t know the extent of what happened until much later. Then I started to hear the horror stories and the hero stories and the pictures that came out of this were awful and heart-wrenching. These children died a horrible death, completely undeserved, and caused by assholes who cut corners to make some extra money. A feeling of helplessness came over me as I thought of those poor children and their families and all the suffering they were going through.
And I think that, more than anything, is the root of our anger. Mexicans are empathetic and I’m sure I wasn’t the only one whose heart wasn’t breaking for each and every one of those poor families. I know people who didn’t lose a loved one in the tragedy but who still cry every day for those poor kids, and who are even angrier than parents who were left childless after this. That empathy is one of the more awesome things about our culture and something I’m very proud of.
But there’s also this.
Mexicans are known to have a strong, black, sexist, and - what some might consider to be - racist sense of humor. I’m more in tune with the gringo sense of humor because of my upbringing, but I do understand and will laugh at inappropriate mexican jokes, no doubt about that. Mexican jokes mock other cultures, races, religions, homosexuality, anything that a lot of people around the world would consider highly offensive. Jokes target victims of natural disasters, like Haiti or Japan or the Indian Ocean tsunami or anything. And I admit that I laugh at a lot of those jokes. Shit, if it’s funny, I’ll laugh at anything. I know how to tell the difference when somebody’s joking because I’m an intelligent fucking adult. But this! Fuck this guy! Really!
Amidst all the rage ON THE INTERNET, some people pointed out that there have been tons of jokes made about Haiti, or about Japan, or about places where a lot more people have senselessly been killed and that we don’t say shit about it and aren’t offended. Damn, they’re right. I’m sure people in Haiti or Japan are offended though, wouldn’t you agree? Although who knows with the Japanese, they’re fucking weird. But yeah, of course they would be offended. Of course people who’ve lost people in a horrific tragedy would be offended with jokes made at their expense. That’s a ridiculous argument to make.
The anger grows exponentially because it happened in our own backyard. It grows even more when reality hits us again and we realize that the assholes responsible for this, who are all millionaires because of shitty daycares they own that they run for the government (the government pays for this, and they pay a whole lot), and who cut corners, bribing who knows who to save a buck.. those fuckers are living their lives as if nothing happened. Even though the blood of 49 innocent children is on their hands, they are still free.
"Platanito" has since posted what appears to be a sincere video apology, going so far as to remove his wig and fake nose dramtically and speaking AS THE REAL PERSON, not the character. He goes through all the necessary steps, saying all the right things, mentioning that the network had nothing to do with this (A-HA), and of course mentioning all the wonderful things he does for childrens’ charities. Pandering, questionable motives ($), and unnecessary dramatic effects aside, the dude seemed genuinely sorry and ashamed for the joke, and it takes balls to own up in the face of such massive public disdain. In truth, I thought he would just give the finger to the whole thing and laugh it off, or not respond as quickly. Instead, he posted his apology the very next day, which is admirable (I guess).
Whether this guy’s career is over or not makes no difference to me at all. I’ve never watched his show, and the few clips I’ve seen of his act have made me chuckle at best. I know a lot of people who are fans though, and the dude gets great ratings for his stuff, tours constantly, and has made a killing with this dirty clown act. More power to him. He found a way, which is something that a lot of us can hope of doing someday.
We have a short-term memory here and I’m sure that in a few months “Platanito” and his stupid joke won’t be nothing but an afterthought. He probably won’t come back to town for a long time (that would take tremendous balls if he did), if at all, so we’ll stop caring about his schtick.
Overall, I’m proud of the way people in my state reacted to this. Proud because the anger at this horrific tragedy still exists, even though it was misguided for a few crazy hours yesterday. Proud because that sense of unity and empathy we all felt that fateful day in 2009 is still there. Proud we still care about those 49 kids and we still have their backs. And as long as the fuckers responsible for this are still out there, I’m sure that unity and anger will persist. The sorrow for those lost children and the anger that the government covered up the whole thing and life just went on as if nothing had happened will continue to be in all of us as long as justice isn’t served. The sad part is that will probably never happen and that innocent people will spend many years in jail because of this, while the real criminals walk free.
Watch out. Don’t fuck with our 49 lost children, because hell will be unleashed.
Hey, did you hear that one about Haiti?