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
It’s long but worth it.
Tears are happening because people are inherently good and when it shines through it makes me so happy.
Q:thank you so much for taking my survey!! YOU ARE AWESOME and I hope you have a great day! Your help is really appreciated! <3
For more posts like this, follow the Ultrafacts Blog!
The whole compiled list of useful links. More is to come! Follow today!
lovelycharts.com – create flowcharts, network diagrams, sitemaps, etc.
e.ggtimer.com – a simple online timer for your daily needs.
coralcdn.org – if a site is down due to heavy traffic, try accessing it through coral CDN.
random.org – pick random numbers, flip coins, and more.
google.com/webfonts – a good collection of open source fonts.
homestyler.com – design from scratch or re-model your home in 3d.
join.me – share you screen with anyone over the web.
wetransfer.com – for sharing really big files online.
hundredzeros.com – the site lets you download free Kindle books.
polishmywriting.com – check your writing for spelling or grammatical errors.
marker.to – easily highlight the important parts of a web page for sharing.
whichdateworks.com – planning an event? find a date that works for all.
everytimezone.com – a less confusing view of the world time zones.
gtmetrix.com – the perfect tool for measuring your site performance online.
noteflight.com – print music sheets, write your own music online (review).
imo.im – chat with your buddies on Skype, Facebook, Google Talk, etc. from one place.
translate.google.com – translate web pages, PDFs and Office documents.
kleki.com – create paintings and sketches with a wide variety of brushes.
similarsites.com – discover new sites that are similar to what you like already.
wordle.net – quick summarize long pieces of text with tag clouds.
bubbl.us – create mind-maps, brainstorm ideas in the browser.
kuler.adobe.com – get color ideas, also extract colors from photographs.
ge.tt – qiuckly send a file to someone, they can even preview it before downloading.
tinychat.com – setup a private chat room in micro-seconds.
privnote.com – create text notes that will self-destruct after being read.
draw.io – create diagrams and flowcharts in the browser, export your drawings to Google Drive and Dropbox.
downforeveryoneorjustme.com – find if your favorite website is offline or not?
urbandictionary.com – find definitions of slangs and informal words.
scribblemaps.com – create custom Google Maps easily.
formspring.me – you can ask or answer personal questions here.
sumopaint.com – an excellent layer-based online image editor.
snopes.com – find if that email offer you received is real or just another scam.
typingweb.com – master touch-typing with these practice sessions.
mailvu.com – send video emails to anyone using your web cam.
timerime.com – create timelines with audio, video and images.
stupeflix.com – make a movie out of your images, audio and video clips.safeweb.norton.com – check the trust level of any website.
For more posts like this, follow the Ultrafacts Blog!
LETS GET THIS TO 1,000,000 NOTES! Reblog this because everyone NEEDS this!
I’m still in school because the quarter system is stupid. As such, I could really use your help! I’m writing a research paper about the use of the internet. Take my survey (it’s about internet friends, kind of!) and help me pass my class!If you take it, you could win one of several prizes!
Thank you to all who have taken this so far! I still need a lot more responses though, so if you haven’t already, please click the link and answer a few questions!
I will seriously love you so much! I need a certain number of responses to have a “valid” survey and thereby pass the class!