Tiffanymary2018 - My Like Thing That I Enjoy😍

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. 

Thank you, 

Jeanie 

Facebook:  facebook.com/eisforedna

Twitter: @EisforEdna 

HuffPost

Jennifer Hudson Lands Historic EGOT Status At The 2022 Tony Awards

The soon-to-be talk show host made history as the third Black EGOT winner to achieve the honor.

The songstress and producer, who has an Emmy, Grammy and Oscar, became the 17th member of the esteemed EGOT titleholders after “A Strange Loop” won Best New Musical.

Hudson also made history as the third Black EGOT winner to take the crown, and the fifth woman to receive the distinction.

CALL TO ACTION: Black urban farmer Jeffery Webb has been repeatedly harassed in his town, and as a result both his livelihood and life are at risk. We need to be supporting black farmers now more than ever, as key members of the community providing an essential service to it!

Since Tumblr hates links, I’ll reblog this post with the gofundme link. I’ve also attached an image of his farms Facebook page - even if you can’t donate, give them support. Let the town know there’s eyes on them, and let the Webb’s know that they are seen and supported.

If non black people want to damage the fuck out of their hair that’s fine, whatever, but don’t be calling the moldy ass shit you get as a result dreadlocks, dreads, or locs, because I promise you they aren’t.

Sincerely, someone who actually knows what the fuck they talking about.

Feel free to reblog if you aren’t black and against cultural appropriation

A Black woman has been deceived into losing her children to the System. She needs help. Please share. Time is running out for her.

Good morning That's Tea, I'm sorry for skipping the usual pleasantries and etiquette, Im just desperate. I was wondering if you could share my....

A Black woman has been deceived into losing her children to the System. She needs help. Please share. Time is running out for her. They’re going to start adopting out. Please look at what’s happening. Please share.

US Helplines:

Depression Hotline: 1-630-482-9696

Suicide Hotline: 1-800-784-8433

LifeLine: 1-800-273-8255

Trevor Project: 1-866-488-7386

Sexuality Support: 1-800-246-7743

Eating Disorders Hotline: 1-847-831-3438

Rape and Sexual Assault: 1-800-656-4673

Grief Support: 1-650-321-5272

Runaway: 1-800-843-5200, 1-800-843-5678, 1-800-621-4000

Exhale: After Abortion Hotline/Pro-Voice: 1-866-4394253

Child Abuse: 1-800-422-4453

UK Helplines:

Samaritans (for any problem): 08457909090 e-mail jo@samaritans.org

Childline (for anyone under 18 with any problem): 08001111

Mind infoline (mental health information): 0300 123 3393 e-mail: info@mind.org.uk

Mind legal advice (for people who need mental-health related legal advice): 0300 466 6463 legal@mind.org.uk

b-eat eating disorder support: 0845 634 14 14 (only open Mon-Fri 10.30am-8.30pm and Saturday 1pm-4.30pm) e-mail: help@b-eat.co.uk

b-eat youthline (for under 25’s with eating disorders): 08456347650 (open Mon-Fri 4.30pm - 8.30pm, Saturday 1pm-4.30pm)

Cruse Bereavement Care: 08444779400 e-mail: helpline@cruse.org.uk

Frank (information and advice on drugs): 0800776600

Drinkline: 0800 9178282

Rape Crisis England & Wales: 0808 802 9999 1(open 2 - 2.30pm 7 - 9.30pm) e-mail info@rapecrisis.org.uk

Rape Crisis Scotland: 08088 01 03 02 every day, 6pm to midnight

India Self Harm Hotline: 00 08001006614

India Suicide Helpline: 022-27546669

Kids Help Phone (Canada): 1-800-668-6868

FREE 24/7 suicide hotlines:

Argentina: 54-0223-493-0430

Australia: 13-11-14

Austria: 01-713-3374

Barbados: 429-9999

Belgium: 106

Botswana: 391-1270

Brazil: 21-233-9191

China: 852-2382-0000

(Hong Kong: 2389-2222)

Costa Rica: 606-253-5439

Croatia: 01-4833-888

Cyprus: 357-77-77-72-67

Czech Republic: 222-580-697, 476-701-908

Denmark: 70-201-201

Egypt: 762-1602

Estonia: 6-558-088

Finland: 040-5032199

France: 01-45-39-4000

Germany: 0800-181-0721

Greece: 1018

Guatemala: 502-234-1239

Holland: 0900-0767

Honduras: 504-237-3623

Hungary: 06-80-820-111

Iceland: 44-0-8457-90-90-90

Israel: 09-8892333

Italy: 06-705-4444

Japan: 3-5286-9090

Latvia: 6722-2922, 2772-2292

Malaysia: 03-756-8144

(Singapore: 1-800-221-4444)

Mexico: 525-510-2550

Netherlands: 0900-0767

New Zealand: 4-473-9739

New Guinea: 675-326-0011

Nicaragua: 505-268-6171

Norway: 47-815-33-300

Philippines: 02-896-9191

Poland: 52-70-000

Portugal: 239-72-10-10

Russia: 8-20-222-82-10

Spain: 91-459-00-50

South Africa: 0861-322-322

South Korea: 2-715-8600

Sweden: 031-711-2400

Switzerland: 143

Taiwan: 0800-788-995

Thailand: 02-249-9977

Trinidad and Tobago: 868-645-2800

Ukraine: 0487-327715

(Source)

Required watching.

Learn about Breonna. 

PSA: This blogger does NOT support R. Kelly. Unfollow if you do, please.

Reblog if you've ever been suicidal, and you're glad you’re still alive today

I want to show people who are struggling now how many of us are out there, and why it is worth hanging in there even when things feel hopeless. I hope if we get enough notes we can help people find the strength to keep going 💕