REFORM NOW!!

Earlier this month, a group of activists, in wheelchairs, from ADAPT, staged a protest in front of the White House. I wish I could have been there to protest with them.

The activists were protesting President Obama's lack of attention to the violation of the rights of people with disabilities, by forcing us to reside in nursing homes rather the providing us with the support and services needed to transition back into the community 


Senator Chuck Schummer has proposed, The Disability Integration Act. ADAPT wants President Obama to support it. Currently, Medicaid and Medicare only pay for five hours of care a day. Medicaid, Medicare and Social Security need to be reformed so that individuals like me aren't forced to live in nursing homes because we need twenty-four-hour care

Programs and services are being cut all the time. I am sure the decision-makers who authorized the cutting of funds to needed services,  have never had someone walk in while they are being given a shower and just start chatting with the aide who is assisting with the shower. That happened to me this week. They were chatting as though I was not even in the room. They showed no respect for my right to privacy at all.  I will never get used to the lack of sensitivity here.

I  do not mean to disrespect the social worker who forced me from my home. They did what they thought was best. I think they should have helped me make my home safer and my care better. They removed me from my home and my life. They have no idea what it did to me, to leave the only home I'd ever known. It was the worst day of my life.

Paraquad has a program that will assist you in transitioning out of a nursing home back into the community. Until the government allocates funds for twenty-four-hour care, I cannot utilize the program. I need to be safe.

It is my hope that  President Obama will support The Disability Integration Act. People with disabilities have the right to be a part of their communities. We should not be penalized because we need care.

https://nonprofitquarterly.org/2016/04/12/disabled-protesters-in-dc-our-homes-not-nursing-homes/

THE GRILL MASTER

Since moving to NHC I realize how fortunate I am. I have a supportive family. They know how difficult living here can be My brother, Bob is my advocate. He does whatever he can to make sure my needs are met.

He also does whatever he can to make me happy. All I have to is tell him I need or want something and he will do his best to get it for me. From Jilly's Cupcakes to yogurt covered raisins, if I want it, he gets it.

Bob made my birthday special, taking my tablemate's orders and bringing us Chines food on my sixtieth birthday. He always makes sure that I have wine in my refrigerator to share too.

Bob's interests include sports, birds, animals and he loves to barbecue. When the weather is nice that's where you'll find him outside barbecuing. Chicken brats, pork steaks, hot dogs. you name it, he can grill it.

One of the residents at my table kept saying that they wanted a steak. When Bob heard about it, he offered to grill a steak for them on the grill that's on the facilities patio. Next Sunday, the four of us will be treated to steaks and salmon burgers grilled here by my brother. We are looking forward to it.

I realized again how lucky I am. I saw how happy everyone was when he brought us Chinese. Not everyone has a supportive and generous brother I do. Not only does he want me to be happy, but he also wants to make other residents happy too.

I am proud of Bob for offering to barbecue for us. He doesn't like to make a big deal of all the good things he has done for other people. But this is special to me. I wanted you all to know what an amazing brother I have. He has never let me down.

Next Sunday the steaks and salmon burgers will be delicious. I know because my brother is The Grill Master.

JUST ONE TWEET

I am pathetic. I am needy. I am a nerd. I will write the adjectives for you because after reading this post, I know you'll be thinking about all of them. 

Last, Tuesday, April 19th was my birthday. I had a nice day. Family and friends visited. One of my favorite actresses, Nia Vardalos, tweeted me a birthday greeting. (I loved My Big Fat Greek Wedding. I cannot wait to see the sequel.)  My tablemates and I had were treated to Chinese takeout and sake.  All of this celebrating should have been enough  But it wasn't. There is still one gift that I didn't receive. 

I'd been on a mission. I wanted a birthday tweet from Cher. I tried last year. Nothing. I was determined that this year would be my year. She's tweeted other fans her special birthday cake emoticon. I was going to.get one too.  Why it mattered at fifty-nine, I cannot explain, but it did.

Cher had tweeted me, six years ago,, after my mom died. It was time for another. I know fans she has tweeted more than once, Why not me?

A week before my birthday, I began tweeting her every night. Reminder tweets, I was sure she'd want to circle the date in red pencil on her calendar, to make sure she didn't forget. My tweets were funny, stupid and serious. Anything to get her attention.  I even got friends to tweet her on my behalf. Nothing worked. I tried not to be disappointed, but I was. 

I think all of us have interests that we are a little obsessed with. Whether it is sports or following the plot of our favorite TV show. People or things we feel connected to. You might not want to admit it, but you know you know you have one.

I am still tweeting Cher. I looked forward to doing it  I missed it when I stopped. I like making up tweets every night. I am sure 'I'd have more writing opportunities if I worked as hard on those as I do on the tweets/

A friend told me to make this a funny post. I don't know if it's funny or not. I just wrote how I feel.

Cher, I'm still waiting. I know you won't let me down.

SHE DIDN'T!!!

FAKER

"You're a phony," Someone said those words to me recently. They told me that I portray myself as, The Disabled Diva, someone who can do things for herself. when the reality is I cannot do much of anything for myself. Even making a decision is difficult for me. I worry what others will think of me. Even writing this is risky because I might lose readers. I am willing to take the risk.

When my mom died, I was left to manage my house oversee my dog Lucie's care as well as manage my caregivers. If I was too strict, they didn't like it. They'd quit. If was too lenient with them they'd walk all over me. I didn't have the skills to manage them effectively. I had over seventy caregivers come through my house from 2010-2014. I can hear you gasp as you read this.

My journey to NHC  began after the home care agency I was using hot lined one of my home care workers for emotionally abusing me. A state social worker came to my house to talk to me. I thought they were there to talk about the caregiver. They were, but they were also there because I had been hot-lined. I did not realize this at the time. When questions were asked about my finances and my relationship with my family, I did not answer them. I was deemed abrupt and evasive.

Lucie was old and sick. The carpets were ruined. I tried to see that they were cleaned regularly, but the house was a mess. I didn't do a good job with Lucie or my house. The state said I needed twenty-four-hour care. My family couldn't prevent my being forced from my home. I was unsafe. That's why I am here.

I have difficulty communicating my needs effectively. I am always being told that I don't know how to talk to people. Some aides here won't work with me. I am happy to say that all the aides today have worked with me. We have gotten along fine. It all comes down to me not having learned the proper skills. I am working on issues with a therapist.

This was a difficult post to write. It is not easy to admit that I failed. I didn't take advice when it was offered. I don't like anyone thinking I am a phony. I didn't intentionally misrepresent myself.

I hope you will want to continue on my life's journey with me.





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THEY'RE CREEPY AND THEY'RE KOOKY

Coulrophobia. Ever heard of it? I hadn't. When I was little,  I had it and didn't even know it. Coulrophobia means fear of clowns, or more accurately, according to an online dictionary site, "extreme fear of clowns."

When clowns saw me, they'd come right over to me. I suppose they thought  I would be happy to see them. If there was a group of them it would feel like they were descending upon me. When you are three or four years old, that's scary enough. Add to that the fact that I was disabled and could not get away from them on my own. That's really scary.

My mom always knew when a clown was nearby. I would tense up and hide my face. I was trying to hide from them.

When I'd have a high fever I'd have the Clown Dream. I would wake up terrified. And, watching The Joker from Batman, forget it. There was no way.

When I was in nursery school, my mom always made me a birthday cake in the shape of a clown's head What was she thinking?  The clown wore a party hat, had a ruffled collar, and had a red rubber ball for a nose. My mom was very proud of it. I remember seeing pictures of me with my nursery school class, sitting at a table eating the cake. I have to admit that the cake was cute. 

I was asked to appear on a local television children's program called Corky The Clown. They wanted me to help introduce cartoons. My memory is a little fuzzy, but my mom must have explained my fear because it was arranged for me to watch Cliff St. James, The man behind the make-up, transform himself into Corky.  I was mesmerized as I watched him put his clown makeup on. I remember talking a lot. I told him I saw his wife on TV.  His wife Nancy did some local commercials. By the time he was finished putting his makeup on, I wasn't scared at all. In 2014, at the age of eighty-eight, Cliff St. James was inducted into the  Media Hall of fame. Corky the Clown was the first local program to air in color. Being on the show is a fond memory for me. I even had a clown at my tenth birthday party after appearing on it.

I found this topic fascinating. I had no idea that my childhood fear of clowns is now considered a real phobia with a name and symptoms. I thought I was just weird. If only I'd known. 

IT'S CLASSIC

I am a nerd. Why? because  I don't watch much TV.   Watching the news is depressing. I do not enjoy waking up to reports of someone being murdered overnight or hearing about bombs exploding around the globe killing innocent people who were just going about their daily lives. The presidential candidates? I won't even go there. Network TV shows don't interest me either.

I like classic television. Watching the television shows I grew up with makes me feel better when I am stressed. Watching classic television is like visiting old friends.

I have slept with the television every night since I have been here. If I wake up and hear Barney Miller, Newhart, or Johnny Carson, I know I am not alone. Their familiar voices bring me comfort.

I think many of these shows are still relevant today. Take my favorite show, One Day at a Time, for example. Ann Romano was divorced raising her two daughters on her own. She had to prove herself in the male-dominated world of advertising. Later in the series, Ann and Francine opened their own advertising agency.  Pretty impressive for two single women in the 1970s.

After a long work day, Ann came home and dealt with the issues that come with raising two teenage daughters. 

Her oldest daughter Julie constantly rebelled against everything. From running away with her boyfriend to refusing to go to college. Ann and Julie clashed regularly. Barbara had her moments too. The girls had a party when Ann was out-of-town. Barbara had too much to drink. She suffered the consequences.  

My favorite episode centered around the building superintendent Dwayne Schneider.  Schneider was reluctant to have a young man who was mentally challenged work with him.  He did not think the young man would be able to handle the duties of the job. When there was a gas leak in the Romano apartment, Schneider's back is hurt.  He is unable to work. The young man proves that he can do the job. Under Schneider's direction, he shuts off the gas valve and saves the apartment. The episode showed what a person with a disability can do if they are given a chance. 

Classic TV shows may be a little corny, but they depict families talking at the dinner table. The children are looking at their phones. From I Love Lucy to The Twilight Zone. Classic TV has something for everyone. Check it out. You won't be disappointed.