i want so badly to ignore this and just get on with my life, considering that i’m in the midst of tour and traveling the US right now, but it’s clear that I can’t escape this. this is a very long post, i am keeping it under a cut.
additionally, at least until tumblr moves on from this, my askbox is off. it is a nightmare. i can’t deal with it right now.
so. I was an invited panelist at Dashcon, and I was on 10 panels over the weekend. my name is mark, I run Mark Reads and Mark Watches, and have been doing so for 5 years next month. (HOLY SHIT THAT IS A LONG TIME.) I have been attending cons for over a decade and been speaking at them as a panelist or a guest since 2011. Including my own tour events outside of cons, I have participated in over 150 “panels,” ranging from 50 minutes to 4 hours. I’m including this upfront because I’ve already been accused of being a 16-year-old nobody who doesn’t know what he’s doing at cons and is ruining fandom. Also, I’m apparently white and straight. ALSO THIS IS A MESS.
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.
FALSE. Fathers who ask for sole custody are far more likely to get it. It’s just that they don’t ask, mostly women do. Men win custody over women even if they are ostensibly unfit. More and more, judges and parents rule in favor of 50/50 custody. In fact, in the past ten years, the men’s rights movement has been devastating to women seeking custody in court and women are awarded sole custody about half as many times as men.
joss whedon, noted feminist who fired charisma carpenter for daring to be pregnant
joss whedon, white cishet male who decides that he gets to define feminism and rebrand it to make it more appealing to himself, while also erasing the entire history of feminism and ignoring the existence of the term womanist
joss whedon, making a speech about feminism whose only mention of a female is to dismiss her entirely
joss whedon, deciding that the biggest problem with feminism is in its name and not its history of being racist, transphobic, and homophobic
joss whedon, lacking all self-awareness when twisting a brilliant junot diaz quote about poc representation to mean representation for white cis females
joss whedon, trying to equate sexism and racism while completely ignoring that woc exist and can experience both at the same time
joss whedon saying equality is important!!!!! but not casting a single asian person in his show grounded in the fusion of asian - western culture and also equating reavers (literally referring to them as the monsters of the story) with the apache
wait hold up, ignore all that, i should just be super grateful to joss “what is privilege and intersectionality?” whedon for having the courage to speak over women on a continuous basis
eta: now with links for all you asswipes who think i’m making this up solely to demonize your precious white cishet male hero (a lot of this shit is about his recent fucking terrible equality now speech)
joss whedon saying women are defined by not having a “peeny/balls” and the tries to pass it off as a joke, deletes the tweet, and completely fails to engage with trans issues when called out.
But It’s ok because buffy, right?
gross gross gross is it time to add to this post now?
- the aforementioned tweet
- everything in this post
- changing a character (who he did not create) that was very, very firmly established as genderqueer and writing some “but they’re really female” bullshit
- casting a white, blonde woman to play a jewish/romani character
- casting (surprise!) a white woman to play an ethnically ambiguous character
- pretty much every interaction between mal and inara, in which he calls her a whore constantly, but it’s okay because he ~loves~ her
- complete erasure of bisexuality, because apparently, willow’s previous relationships with men (oz, for one) do not matter because "hello! gay now!" and that entire “him” episode
- being incredibly proud of himself for the “mewling quim” line in the avengers because what we really, really needed in the world was for yet another gendered insult to enter back into cultural consciousness
- there is an endless amount of shit i could list
basically, joss whedon remains a huge fucking asshole who refuses to learn (and shuts down anybody who tries to educate him) and how many more racist, sexist, transphobic, all around shitty comments does he have to make before people stop idolizing him and defending his every move?