Start out perfect and don’t change a thing. Always accentuate your best features by pointing at them. And conceal your flaws by sucker punching anyone who has the audacity to mention them.
Never too old to learn from the Muppets.
And this:
“Beauty is in the eye of the beholder and it may be necessary from time to time to give a stupid or misinformed beholder a black eye.” – Miss Piggy
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.
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.
Rather than fighting for every woman’s right to feel beautiful, I would like to see the return of a kind of feminism that tells women and girls everywhere that maybe it’s all right not to be pretty and perfectly well behaved. That maybe women who are plain, or large, or old, or differently abled, or who simply don’t give a damn what they look like because they’re too busy saving the world or rearranging their sock drawer, have as much right to take up space as anyone else.
I think if we want to take care of the next generation of girls we should reassure them that power, strength and character are more important than beauty and always will be, and that even if they aren’t thin and pretty, they are still worthy of respect. That feeling is the birthright of men everywhere. It’s about time we claimed it for ourselves.
Seriously, it surprises me that people still don’t get that “whitewashing” doesn’t just mean “taking a character of color and turning them white,” but also applies to “focusing disproportionately on the stories of white people,” “glossing over or altering parts of a story to make it more palatable or make white people look better,” and “treating ‘white’ as the default race”
The fact that Disney churns out film after film after film after film about white people with a maximum of one film per ethnicity that showcases a group other than white people is whitewashing.
The fact that the story of “Pocahontas” (not her real name) has been substantially altered so that some of the white people in that story don’t look like such villains, with John Smith younger and Pocahontas significantly older, as well as recounting a popular myth of her saving John Smith from near-execution (a story John Smith made up to make himself look brave, the real Pocahontas told him to stop telling and hated him for using her to make himself look good, and he started to spread like wildfire after she died because she could no longer object) is whitewashing.
The fact that the characters on “How I Met Your Mother” are all white, and they supposedly live in New York City, but apparently associate exclusively with other white people (with the exception of Wayne Brady, who occasionally visits from out of town, and a recurring taxi driver) is whitewashing.
The fact that the Doctor has now been a white man a full twelve times in a row is whitewashing even though the character’s always been white, because the idea that there’s a character whose entire appearance can change in a matter of seconds, yet ends up white twelve times in a row by pure random chance, implies that white is a neutral default and other races are a deviation from that norm.
The fact that people get really angry at the suggestion that characters like Newt Scamander or Hermione Granger could be black because the books never explicitly say “they are black” is whitewashing.
Because that’s the thing. People often assume that when someone’s race isn’t explicitly specified, they’re white. People insist that Katniss Everdeen must be white because it is possible for them to rationalize that idea in their head. People think of white as “raceless” and every other color or ethnicity as “raced,” and that’s what we call “eurocentrism.“
And that’s the thing about whitewashing. It’s this idea that a “person” is white, and a “person of color” is black or asian or arab or latin@ or whatever they might be.
It’s why people call John Stewart the “Black Green Lantern” but just call Hal Jordan the “Green Lantern.” It’s why Miles Morales is called “Black Spider-man” but Peter Parker is just “Spider-man.” If you want to throw gender into the mix, it’s why Jennifer Walters is the “She-Hulk” but Bruce Banner isn’t the “He-Hulk.”
People think “character” is white and “character + black” is black. There is no default race. Community did a whole episode about how a truly raceless character would look something like this monstrosity:
But there’s the tricky part: Once you stop thinking of white characters as “character” and start thinking of them as “character + white,” it becomes really overwhelming how many characters are white.
I mean, I know there’s a kerfuffle over Disney Princesses right now, so let’s look at the list of official Disney Princesses, shall we? That is, let’s look at the list and include everyone’s race, not just the princesses of color:
Snow White + White
Cinderella + White
Aurora + White
Ariel + White
Belle + White
Jasmine + Arab
Pocahontas + Native American
Mulan + Asian
Tiana + Black
Rapunzel + White
Merida + White Soon to be added:
Anna + White
Elsa + White
4 of those 13 women are women of color. All four of those women of color are different races than one another. At the moment, the number of white princesses is seven, but it’s about to go up to nine. All nine of those princesses are the same race as one another, despite a few of them being different nationalities, although most of them hail from Western Europe.
And a lot of people are saying “but they’re just accurately portraying the parts of the world those stories are set in!” First of all, the presence of a person of color has never been implausible in any part of the world, in any period of human history. Hell, a bunch of these movies were set after Shakespeare had born, lived, and died, but he still managed to write a play set centuries earlier featuring a black male lead in Italy.
Second, and most importantly, it’s not like they are being assigned a setting at random and have to accommodate it in their character designs. The people at Disney choose to set film after film after film in France and Germany and Denmark.
It’s not that those areas produce more or better fairy tales and folk tales than any of the other continents, it’s that the stories that come from those areas are the ones Disney considers universal.
In the eyes of Disney, there’s a Princess for Black little girls to look up to, a Princess for Native little girls to look up to, a Princess for Arab little girls to look up to, a Princess for Asian little girls to look up to, and nine princesses for all little girls to look up to. It’s no coincidence that in almost all promotional art featuring the “Princess Lineup,” Jasmine, Tiana, Mulan, and Pocahontas are all standing in the back, usually obscured by other white Princesses’ dresses, while the blonde lady brigade stands in the front.
And that is whitewashing.
Fascinating read
Relationship (with life) goals: Live clean, eat clean, think clean, create clean, and love clean.
I believe that anger is grief. We dismiss and label, upon encountering people who are angry a lot, as callous or uncouth or time-bombs. I just can’t believe that life is that goddamned black and white. Many are in a perpetual state of bereavement my darling. So many of us spend our entire lives mourning moments that happened, very early, because no one taught them/us the practice of healthy grieving. For so many of us, we aren’t permitted the time and solitude it takes to “get over” things before life pushes us forward. We have no time to heal before another day or year is thrown on our shoulders and we’re forced to start the fragmentary sorrow all over again. You want to talk about mental health? Then we must, first, address spiritual and emotional health. Imagine a 40-year-old person with years of uncompleted grief on their soul. This is how we are taught to live. Go and buy something, go and pray to something, go and workout, go and eat, go to the film house, go for diverting purposeless sex, go for some romance in the hopes that the love of your partner will save you. It is in these distracting norms that we learn to sin against ourselves and manifest more of the pain we’re avoiding. We are taught everything but the unholy truth- the Mirrored Gospel. That the only way up is through. That the only way out is within. That we must, at all costs, and at all times, belong to ourselves and confront ourselves and save ourselves first. We ought to do this before we go expecting to save someone else or for someone or something else to save us.
Té V. Smith, There is peace and safety and freedom in the mirror (via tevsmith)
Since joining Tumblr, I’ve met a lot of young queer people. Look, I’m a bisexual man in a gay relationship, and I’m approaching 30. I was still a kid when Matthew Shepard’s story was being covered on the news. I remember thinking, “I better keep my mouth shut about these feelings I’m having.”
And then I met Dominic when I was 12, and people could see how in love we were. And we got the shit beat out of us. The year I met him, some kids in the grade above me held me down against the bleachers in our gym and stomped on my hand until my fingers broke. Instead of sending me to the nurse, the teacher sent me to the assistant principal to explain the situation. She asked why the kids had beat me up. I said, “They were calling me gay.”
Her response was, “Well, are you?”
My, “I don’t know,” earned a call to my parents, and I was outed. Efforts were made to keep me from seeing Dom. Throughout high school, Dom’s stepmother intensified these efforts. He slept in the basement of the house. Although he was an incredibly talented student, he was prohibited from participating in any extracurriculars. He suffered a lot of physical abuse during those years.
The day he turned 18, he packed up everything he had and walked to my house, and we’ve lived together ever since. Things are better, but they’re not perfect. I’ve had trucks pull up next to me at stoplights and, seeing the pride sticker on my car, through old drinks and garbage into my window. I no longer speak to my dad’s side of the family. I haven’t been to see them for Christmas or Thanksgiving in years. One of my uncles had cornered me at Thanksgiving when I was 17 and said, “I’m not going to judge you, but I’d be happy to break your neck so God can do the judging a little sooner.”
I joined a support group for trans and intersex people. When I joined, 40 people attended regularly. Within the year, the group was half the size it had been. Some couldn’t make it anymore, because they were staying at the shelter, where their stay hinged on them agreeing to instead to attend homophobic sermons. Some were put in correctional therapy. Five of them died. Three of those, I didn’t know, but I knew Alex, the 19 year old who was fag-dragged in Kentucky and died a day later in the hospital, and I knew Stephanie, who went home to Alabama to care for her mom in hospice and was beaten to death with a baseball bat by her mom’s boyfriend.
Tumblr is not reality. The dynamic here does not reflect the dynamic out there. Here’s the part where I finally make a point, and it might be extremely unpopular – but guys, value your allies.Value each other. We are met with enough hate in our daily lives to enter an online safe-space and meet more hate from our own, over petty things. Don’t go after one another over every little thing you find problematic.
Learn to see nuance. Maybe the word “queer” bothers you, and you see a gay man using it as an umbrella term. Maybe someone called a trans man a trans woman because they’re confused about terminology, but the post where they did it was voicing support for the trans community. Maybe someone is just asking a question, wanting to learn more. Stop. Attacking. These. People.
Allies are being driven away. Members of our own community are being ostracized. Others are feeling nervous and estranged, and it’s largely because of places like Tumblr, where the social justice movement is quickly becoming violent and radical. I am begging you, stop nitpicking “problematic” things and start directing your efforts to create real change. When it comes to comes to your allies, forget the “social justice warrior” mentality and put down your torch. Educate calmly. Be respectful. Be understanding. Be forgiving. And I’m certainly not saying that your anger doesn’t have a good place – when you are met with bigots on the street, congress members who want to pass hateful laws, violent protesters, abusive parents, prejudiced teachers, that is when you need to be a warrior. That’s when it counts. In the real world. When you have the opportunity to protect people from real harm. Attacking your would-be allies via anonymous asks is just going to lose us ground in the long run. And we don’t have time for that, not when trans women of color are being murdered every day, not when states are still fighting against marriage equality, not when there are politicians in office who believe that trans people are possessed by demons, not when we’ve just lost 50 brothers and sisters to one gunman, not when the media won’t even admit that the attack was homophobic.
Please step back. Look at the big picture. Look at where we are, globally. Don’t just log on to your safe space and attack your allies over small missteps. That’s like washing the dishes in a house that’s on fire, kids. Let’s fight on the battlefield, and when we come home to each other, let’s just focus on bandaging up our wounds so we can go out and win the war.
I texted one of my best friends this morning and asked, “Did you hear about Orlando?” because the first time I ever went to a gay club and pretended like I was “out” was with him when we were fresh out of high school. Out of all my friends, he’s probably spent the most time in gay clubs. Which means I’m more worried about him than about my other friends. So I texted him.
I’m tired.
They want people to give blood, but it’s gay people who need the blood and it’s gay people who can’t donate. But we’re in crisis mode! We’ll take your tainted gay blood for today only!
I’m tired.
I held hands with a man last week and thought, “Oh no, we’re in a small town in Utah and this is dangerous because we’re both gay,” before I remembered that he’s a guy and I’m a girl so no, it’s not dangerous. But the next time I hold hands with a girl, will someone see us and get mad enough to shoot 50 gay people? Will I feel responsible when I read the news? Will I feel like a danger to society for being gay?
I’m tired.
I went to Pride in Salt Lake City last weekend and I complained as I stood in line in the hot sun and I complained about the ticket prices and I complained about the festival being smaller than it was last year and I complained. When it was over, I was still alive. I’m still alive. I can’t believe I complained.
I’m tired.
Bury your gays. Currently on television, 4 percent of characters identify as LGBT. In 2016, about 40 percent of that 4 percent have already died. Yesterday, that might’ve been the issue I wanted to discuss. Yesterday, I might’ve been angry about fictional gays dying. Yesterday. Art imitates life, life imitates art, and I am tired.
I’m tired.
A year ago I put a rainbow flag around my shoulders and celebrated the legalization of gay marriage in the United States. A year ago there was no law banning transgender people from using the bathroom of their choosing. A year ago a man hadn’t shot 50 gay people dead because he saw two men kissing and got angry. “Now that gay marriage is legal, what more do you people want?” Well, I want to stay alive, for one thing.
I’m tired.
There aren’t gay coffee shops or gay restaurants – there are gay nightclubs. Gay nightclubs where LGBT people can meet other LGBT people and feel safe. I want to meet other LGBT people and make friends with LGBT people, but I also don’t want to die.
I’m tired.
My existence is controversial. Even though I’m out, I have to be careful about how “gay” I “act.” What happens if I’m at work and offend a customer? What happens if someone I know reads these words and decides to punish me for them? What happens if someone gets so angry about my sexuality that they shoot 50 people?
Just remember. There is no such thing as a fake geek girl. There are only fake geek boys. Science fiction was invented by a woman.
Specifically a teenage girl. You know, someone who would be a part of the demographic that some of these boys are violently rejecting.
Isaac Asimov.
yo mary shelley wrote frankenstein in 1818 and isaac asimov was born in 1920 so you kinda get my point
If you want to push it back even further Margaret Cavendish, the duchess of Newcastle (1623-1673) wrote The Blazing World in 1666, about a young woman who discovers a Utopian world that can only be accessed via the North Pole – oft credited as one of the first scifi novels
Women have always been at the forefront of literature, the first novel (what we would consider a novel in modern terms)was written by a woman (Lady Muraskai’s the Tale of Genji in the early 1000s) take your snide “Isaac Asimov” reblogs and stick it
even in terms of male scifi authors, asimov was predated by Jules Verne, HG Wells, George Orwell, you could have even cited Poe or Jonathan Swift has a case but Asimov?
PbbBFFTTBBBTBTTBBTBTTT so desperate to discredit the idea of Mary Shelly as the mother of modern science fiction you didn’t even do a frickin google search For Shame
And if you want to go back even further, the first named, identified author in history was Enheduanna of Akkad, a Sumerian high priestess.
Kinda funny, considering this Isaac Asimov quote on the subject:
Mary Shelley was the first to make use of a new finding of science which she advanced further to a logical extreme, and it is that which makes Frankenstein the first true science fiction story.
Even Isaac Asimov ain’t having none of your shit, not even posthumously.
You know what else was invented by women? Masked vigilantes, the precursor to the modern superhero. Baroness Emma Orczy wrote The Scarlet Pimpernel in 1905.
The character would later inspire better known masked vigilantes such as Zorro and Batman.
Got that?
Stick that in your international pipe and smoke it
I have literally been telling people this for over a year.
the first extended prose piece – ie a novel, was not, as many male scholars will shout, Don Quixote (1605) but The Tale of Genji (1008) written by a woman
The first autobiography ever written in English is also attributed to a woman, The Book of Margery Kempe (1430s).
The day may come when I find this post and do not reblog it, but it is not this day.
Marvel
seems adamant not to change with the times. Coming under fire for a
lack of diversity, the treatment of female characters, the failure to
deliver films that push the boundaries, The Powers That Be at Marvel
have done the minimal to try and placate fans. But it’s not good enough,
and people are really starting to notice.
Finally an article discussing the true face of Marvel Studios and their executive decisions. No fan pleasing platitudes here, just a pull of the curtain to face some hard truths: They need to do better.
ealdor 