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.
the best moment in cinematic history
Buffy the Vampire Slayer - First and Last lines
- requested by Anon
my favourite relationships ★ simon and river (firefly)
i got a few letters at first but then i didn’t hear for months. finally i got a letter that made no sense. she talked about things that never happened, jokes that we never.. it was code. it just said… “they’re hurting us. get me out.”
It’s funny how science fiction universes so often treat humans as a boring, default everyman species or even the weakest and dumbest.
I want to see a sci fi universe where we’re actually considered one of the more hideous and terrifying species.
How do we know our saliva and skin oils wouldn’t be ultra-corrosive to most other sapient races? What if we actually have the strongest vocal chords and can paralyze or kill the inhabitants of other worlds just by screaming at them? What if most sentient life in the universe turns out to be vegetable-like and lives in fear of us rare “animal” races who can move so quickly and chew shit up with our teeth?
Like that old story “they’re made of meat,” only we’re scarier.
HOLY SHIT THEY EAT CAPSAICIN FOR FUN
YOU GUYS I HEARD A HUMAN ONCE ATE AN AIRPLANE.
A HUMAN CAN KEEP FIGHTING FOR HOURS EVEN AFTER YOU SHOOT IT
humans are a proud warrior race with a pantheon of bloody gods: Ram-Bo, Schwarzenegger, etc.
REMOVING A LIMB WILL NOT FATALLY INCAPACITATE HUMANS: ALWAYS DESTROY THE HEAD.
WARNING: HUMANS CAN DETECT YOU EVEN AT NIGHT BY TRACKING VIBRATIONS THROUGH THE ATMOSPHERE
WARNING: HUMANS CAN REPRODUCE AT A RATE OF 1 PER SPACEYEAR. DESTROY INFESTATIONS IMMEDIATELY
THE HUMAN MOUTH HAS OVER THIRTY OUTCROPS OF BONE AND POWERFUL JAW MUSCLES.
HUMAN BITES CAN BE FATALLY INFECTIOUS EVEN TO OTHER HUMANS
WARNING: HUMANS CAN AND WILL USE IMPROVISED WEAPONS. SEE CLASSIFIED DATA LABELED J. CHAN.
HUMANS CAN PROJECT BIOWEAPONS FROM ALMOST EVERY ORIFICE ON THEIR BODY. DO NOT INHALE
OH GOD THE HUMANS FIGURED OUT DOOR HANDLES OH GOD OH GOD
More seriously, humans do have a number of advantages even among Terrestrial life. Our endurance, shock resistance, and ability to recover from injury is absurdly high compared to almost any other animal. We often use the phrase “healthy as a horse” to connote heartiness - but compared to a human, a horse is as fragile as spun glass. There’s mounting evidence that our primitive ancestors would hunt large prey simply by following it at a walking pace, without sleep or rest, until it died of exhaustion; it’s called pursuit predation. Basically, we’re the Terminator.
(The only other animal that can sort of keep up with us? Dogs. That’s why we use them for hunting. And even then, it’s only “sort of”.)
Now extrapolate that to a galaxy in which most sapient life did not evolve from hyper-specialised pursuit predators:
- Our strength and speed is nothing to write home about, but we don’t need to overpower or outrun you. We just need to outlast you - and by any other species’ standards, we just plain don’t get tired.
- Where a simple broken leg will cause most species to go into shock and die, we can recover from virtually any injury that’s not immediately fatal. Even traumatic dismemberment isn’t necessarily a career-ending injury for a human.
- We heal from injuries with extreme rapidity, recovering in weeks from wounds that would take others months or years to heal. The results aren’t pretty - humans have hyperactive scar tissue, among our other survival-oriented traits - but they’re highly functional.
- Speaking of scarring, look at our medical science. We developed surgery centuries before developing even the most rudimentary anesthetics or life support. In extermis, humans have been known to perform surgery on themselves - and survive. Thanks to our extreme heartiness, we regard as routine medical procedures what most other species would regard as inventive forms of murder. We even perform radical surgery on ourselves for purely cosmetic reasons.
In essence, we’d be Space Orcs.
Our jaws have too many TEETH in them, so we developed a way to WELD METAL TO OUR TEETH and FORCE THE BONES IN OUR JAW to restructure over the course of years to fit them back into shape, and then we continue to wear metal in out mouths to keep them in place.
We formed cohabitative relationships with tiny mammals and insects we keep at bay from bothering us by death, often using little analouge traps.
And by god, we will eat anything.
- We use borderline toxic peppers to season our food.
- We expose ourselves to potentially lethal solar radiation in the pursuit of darkening our skin.
- We risk hearing loss for the opportunity to see our favorite musicians live.
- We have a game where two people get into an enclosed area and hit each other until time runs out/one of them pass out
- We willingly jump out of planes with only a flimsy piece of cloth to prevent us from splattering against the ground.
- Our response to natural disasters is to just rebuild our buildings in the exact same places.
- We climb mountains and risk freezing to death for bragging rights
- We invented dogs. We took our one time predators and completely domesticated them.
- On a planet full of lions, tigers and bears, we managed to advance further and faster than any other species on the planet.
Klingons and Krogan and Orcs ain’t got shit on us
We drink ethanol (in concentrations high enough to be used as an effective as microbicide or a solvent!) for the express purpose of achieving blood toxicity and disrupting normal brain function… AS A RECREATIONAL ACTIVITY!
On the same subject, we also deliberately incinerate assorted substances and then inhale the particulate-heavy smoke and vapor resulting for the same effect. EVEN IN THE FACE OF SAID SUBSTANCES BEING CARCINOGENIC, BECAUSE WE JUST DON’T GIVE A FUCK.
Humans do not have biological castes. Kill their commander and another will take its place. Soldiers left alone on a planet will start farming and manufacturing to survive. Farmers and manufacturers will take up arms and kill you if pressed. Just because two humans look different doesn’t mean they cannot do each other’s jobs.
Breeding does not kill them. A single human can mate dozens or hundreds of times in a lifetime. They often do so as recreation. Xenobiology team six believes they do not have a mating season but this is too strange to be true.
Their appendages are not designed for hitting, so they developed special training to make them very good at hitting anyhow.
The proteins making up their bodies are toxic and cause prion disease. Do not touch anything humans have touched. Do not consume earth foods. Fire does not adequately remove this contamination.
Humans perceive sixteen times the colors we do. Do not hide in bushes or vines from humans. They can distinguish your pelt from the foliage with ease.
We tried venting waste gas into the tunnels to kill the humans when they attacked. Turns out they breathe it.
Everything on their planet came from a single biological strain. They developed comprehensive genetics BEFORE they developed space travel.
They lack radio receptors and cannot be brought into compliance with right-thought simply by broadcasting to them. Even after we learned how to translate it into sound-waves one of their hatchlings drove the Great Authority mad by responding to every demand with a single question: “Why?”
#an individual human being is actually a microbiome in its own right—you are dealing with a legion each time you approach them #they carry pathological agents inside their deep tissues and this is advantageous to their health #one of the most widespread and resilient viruses on their planet is treated as mildly hazardous—even though it causes #massive disruption to the body’s homeostasis #(their young offspring endure multiple rhinovirus infections EACH YEAR yet they seem unperturbed by this) #they have developed such long lifespans that now their primary threat is their own body’s degeneration #humanity has literally figured out how to survive so long that their body gives out under them #and they are not satisfied with that #stupid willful vengeful survivalists who treat mortality like a challenge
I love every single variation on this post, whenever it scrolls across my dash.
Although bipedal and nominally terrestrial, humans are also capable of highly efficient climbing, brachiation, and swimming without mechanical or technological assistance.
In times of plenty, humans will ingest surplus food and metabolize it into a form of stored nutrition which permeates their tissues and forms a protective, thermally insulating layer under their skin. Even a human with minimal ‘fat’ reserves can go for several Terran days without appreciable food intake.
Humans are highly neuroplastic, and retain the ability to learn throughout their life cycle. Indeed, geriatric humans rely increasingly on the synthesis and application of their accumulated knowledge as their physical condition declines.
The human olfactory system is notoriously insensitive, and scents which may incapacitate other species have no appreciable effect on them.
Humans are effectively psy-null. They possess no psionic abilities of their own, and attempts at one-way psionic contact have resulted in severe trauma to researchers due to the alien structure of human minds.
The human skeleton is composed of a hard, resilient mineral-biological composite. This renders them capable of withstanding heavy loads and impacts, and of delivering devastating blows with all extremities. Although somewhat brittle, the stone-based tissue of human bone retains the ability to heal when injured.
you know, black widow is a hard character to write and it’s not like they have a script just lying around-
well they can’t have had that for long-
it’s been such a long time though, i’m sure he doesn’t still want to do it-
well, it’s also not like there was ever another script in development before or anything-
but does she have any history of working well with Marvel and writing a great movie with a plot that seemed like a hard sell-
it’ll be hard to find a director though, that will have to bear the responsibility of directing the first Marvel female-led movie-
but is she a strong character who has been established in several other hugely successful/well-received movies and played by one of the most bankable actresses in the world-
then again, maybe she doesn’t even want to do a black widow movie-
wow, so what the fans have to say actually matters?! that’s great! so they might listen to us and-
but they do supposedly have movies planned up until 2028, we must at least be getting one black widow movie at some point-
I love Marvel movies… I really love what Marvel Studios have been doing… but this whole Black Widow movie being shelved each and every time is one of the dumbest move they’ve done… Black Widow is already established, I have nieces who LOVES the character and would love to see a solo movie of her but Marvel keeps on pulling all these dumbass things over this project… seriously man, GET TO THE MOVIE ALREADY!!!
this guy was watching the vmas with me and now he’s educating himself how precious is that
he keeps asking me all these questions about aspects of feminism and he’s like “so basically it’s about letting women do what they want without being judged for it” and I was like yea and he was like “oh okay that’s so simple why isn’t everyone a feminist” it’s precious
update: I banged him