DISABILITY PRIDE MONTH

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 July was Disability Pride month. I had the entire month to write a post about it. I will be honest with you  I was not going to write about it. Until July 31st, a friend told me I'd better get to it.  There were only a few hours of Disability Pride Month left. I was binge-watching  Inventing Anna on Netflix. I took a page from Scarlet O'Hara's book. I told myself that I'd think about it tomorrow.

Yeah, I know, It's August. Better late than never, alright?

Disability Pride month is a month to celebrate and remember the pioneers of the Disability Rights Movement like those featured in the Netflix documentary Crip Camp.  They fought for inclusion, accessibility, and to be seen and heard.  I admire them. I  respect them. I thank them. Celebrate Disability Pride?   I was just not feelin' it.

I am not proud of my CP nor am I ashamed of it.  My CP just is. I don't want or need to draw attention to the fact that I am different, that I need care 24/7 and can't do the most basic things without assistance. Why draw attention to the obvious? Celebrate that?  No thanks.  

There is at least one person who supports my viewpoint.  Check out this article by  Ed Tobias who is a writer for Multiple Sclerosis Today. https://multiplesclerosisnewstoday.com/columns/2020/07/07/disability-pride-month-july- criticism/ 

It's kind of an oxymoron.  People with disabilities spend eleven months out of the year saying they're just like everyone else.  The same. But when July comes around the message changes to,"

  I would rather draw attention to my writing ability than my disability but that's just me. 

The ADA was not passed until 1990.  I began my part-time job in 1989. I fought for my college and grad school education. I had people who believed in me enough to turn an idea into a part-time job. The ADA did not exist, and yet I got a job. That is what I would celebrate. 

Enough of my ranting. In July of 2023 knock yourselves out. Have parades, march, whatever. Celebrate being disabled.  

I will be celebrating my accomplishments, not because of, but rather in spite of.

I love this video. I aspire to be like Jerry.

TALK IS CHEAP

 

How important is talking to and connecting to one another in our society? 

Think about it. If there were no conversations, no exchange of ideas, or if the human race did not show interest in or care about one another the Earth would be a boring planet inhabited by a bunch of selfish human beings. There would be no scientific, technological, or medical discoveries to help the human race evolve. We'd be a planet of cavemen fighting and clubbing each other over the head for food and water. Communicating in grunts. How attractive.

How important do you think talking to someone with a disability is?  People with disabilities are ignored all the time. The more severe an individual's disability is the more likely they are to be ignored when they are in a group. What could they possibly contribute to a conversation?  

How important do you think is it to have a connection and to be able to have an open dialogue with the people who care for those of us with disabilities?

How important is it that the caregiver and the client listen to and respect each other?

How important is continuity of care to a person with a disability?  

I am not going to give you an answer. I want you to think about each question. I want you to think about how you would feel if you had caregivers and some of them treated you like you were just a body. 

How nervous might you be if a new staff member was starting and they have never worked with you before?  They have never assisted someone in using the bedpan at night?  The administration moves the staff around. Clients have no say. That's weird because we live here We have to interact with the staff. The administration does not.

I was in the hospital overnight in 2019. The nurses talked to me, they checked on me, and, if they got a call on their cell, while in my room, they did not answer it. Their focus was on me, my needs, and what they could do to make me comfortable.  I asked one of the nurses if I could live there.

I want to thank the SC for taking me with her, while she ran errands, for the past two weeks. We talked and laughed. I felt normal. I felt like a person. 

I want to thank any staff member who takes the time to talk to me. To listen to me.  The staff who does not have their noses buried in their cellphones. Thank you for your help. Thank you for showing compassion toward me.

These have been the most difficult four years of my life. All I really want is for God to call me. I want to spend Enternity on the fluffiest cloud ever. Until then I am proud. I am making it,  I am surviving. I  am not giving up. That's what having a disability is all about.

FYI: The new overnight staff person is awesome. Very kind. She knows her stuff. She does not want me to worry.  Change can be good. #learningandgrowing

Communication is everything to me.

And, it's free

 

LAND OF THE FREE?

I haven't felt like writing a post. I can't write a Fourth of July post about what a great country I live in.  There are cracks in its foundation. In my opinion, democracy is beginning to crumble.

A woman's constitutional right of control over her body was overturned with the repeal of Roe v. Wade. The government now has control over a woman's uterus. (on a state-by-state basis. My state is a red state. I am ashamed.) I am not for or against it.  I am pro-choice. A woman's choice is between her and God. It should be no one else's business/

Setting this country back fifty years is the first crack in its foundation. What will be the next? Any group that doesn't fit the norm?  And, why do nine justices get to determine what the norm is? 

What will be the fate of those of us with disabilities? When you receive government assistance the government reserves the right to have a say in almost everything you do.

The Ugly Laws were repealed in 1974. Let's reinstate those. 

https://confessionsofadisableddiva.blogspot.com/2021/04/ugly-laws.html  

That way my presence or the presence of any one of my disabled peeps won't offend anyone. Keep us locked away or warehouse us in institutions. We are a burden on society anyway. What's the difference?

That is what scares me the most.

 

People tell me I talk too much. I have a bad habit of interrupting other people when they are speaking.  I guess I am just trying to be heard. Listened to. Not forgotten.

Women, keep fighting for your reproductive rights. LGBTQ+  community, keep fighting to be seen by everyone as the unique and beautiful people you are. No one has the right to judge how you live your life.

And to my disabled peeps. We've been fighting to be seen, heard, and equal are whole lives. We can't give up now.

I used to be proud of this country. I still love the principles it was founded on. I hope they are not disappearing.

Our freedom is in jeopardy.  I hope the tide turns before it is too late.

Instead of blowing up your money on backyard fireworks displays that pollute the air and cause animals distress, can also cause  PTSD, and may upset individuals with Autism and CP why not donate to an animal shelter. Do something positive. Watch fireworks displays put on by professionals.

Be safe.

Be considerate

Be kind

THIS

IT'S NOT POLITICS...IT'S PEOPLE

It takes a monster to kill children. But to watch monsters kill children again and again and do nothing isn’t just insanity—it’s inhumanity. -Amanda Gorman-

REPEAL THE SECOND AMENDMENT

WHAT WOULD ALI DO?

Borrowed from Ali Wentworth's Instagram
(Stolen is such an ugly word.)

I want to write like actress/writer Ali Wentworth. She can find the funny side of almost anything. I want to have the ability to have sharp, funny comeback lines that will stop people in their tracks. Make them either laugh or cry. Hopefully the former. (Although, in some instances, the latter would work too.)

I envision Ali Wentworth's glass to have the tiniest of hairline cracks in it. Her glass, I am sure, is full of snappy comebacks and a plethora of witty lines to handle whatever life throws at her.

Me?  (Well, have you read my blog?) not so much. My glass is not half, empty, half full, or cracked.  My glass has disappeared.  My thoughts, words. and emotions spilled out with nowhere to go. 

If Ali Wentworth had been blessed/with spastic CP, I have no doubt she would find humor in it. For example, when a new staff member saw her sitting naked in her shower chair, while they observed her being given a shower, Ali would probably say something like, "Shouldn't we go to the movies first? Share a tub of buttered popcorn?"

If a staff member called her the B-word under their breath I bet Ali would interpret it as a compliment instead of a vulgarity.  "Why thank you. A bit** is a female dog. I love dogs. I have two. Cooper and Daisy."  Yep. That line would stop them dead in their tracks. Leaving the offender speechless. Mouth agape. (The offending staff member has been reprimanded.)

Me? I collapse into a puddle of tears. My ugly cry leaves them secretly laughing at me. (Score one for the staff.)

I have a rich fantasy life. Hey, don't judge. It helps me cope with living here. (It's either that or a daily shot of Fireball. Making up scenarios in my head is more fun.)

 My current fantasy is that I am having lunch with Ali Wentworth. She has been asked to give the commencement address at a local university. I am honored to be lunching with her at Wasabi Sushi Bar. (Was there ever any doubt? California and Philadelphia rolls. Yum!)  I silently remind myself to remember to take small bites, to wipe my mouth frequently, and if any of my food needs to be cut up, ask the server, not Ali.

Ali is giving me some pointers on putting a dose of humor into my writing.  A serious blog post does not have to be all doom and gloom. I know this. Finding a balance is the key Ali is offering her advice regarding some comeback lines for the times the staff is rude to me as well. 

There is so much I want to ask her. A million topics are running through my head.

Best/worst thing about growing up in Washington, D.C.? 

When did she first realize she had a gift for making people laugh? 

Does she have plans to write another book?

Has she ever considered writing a novel?

How long is the writing process for one of her books?  

What makes her chocolate chip cookies unique?   

I want to learn from Ali Wentworth. I keep it professional. I don't want to sound like some geeky fangirl. I refrain from mentioning her husband.  Morning talk show host and political commentator for ABC News, George Stephanopoulos. No matter how intelligent and good-looking I think he is. (Did I just write that?  So much for keeping it professional.)

What would Ali do if she had spastic CP?

What does Ali try to do in her life?

She looks for and finds humor.

For More information on Ali Wentworth, and to add a little humor to your life, check out:

Books  https://www.amazon.com/Ali-Wentworth/e/B001KDS28I/ref=aufs_dp_fta_dsk

Podcast Go Ask Ali.  Available on all popular streaming platforms

Instagram  https://www.instagram.com/therealaliwentworth/

Her 2016 TV series, Nightcap, is currently streaming on Hulu

I BEG TO DIFFER

 

Thomas Wolfe's novel You Can't Go Home Again was published in  1940.  According to the website, Book Browse the title of his novel means "If you try to return to a place you remember from the past it won't be the same as you remember it."

 

I beg to differ

Back in January, I sent an email to my to three of my besties. My nursing home peeps Julie, Chris, and Nancy. I asked them if they would celebrate my birthday with me.

I knew asking was presumptuous of me. That's why my finger hovered over the keyboard mouse, on my laptop for a few seconds before I clicked send.

Then the what-ifs began running through my head. What if they thought my request was a ploy just to get gifts? What if they were too busy? What if they just did not feel like making the trip?  What if sending that email turned out to be one of the most foolish things I'd ever done?

What was I expecting? My friends had moved on to new journeys in their lives. Even the nursing home had changed its name and management. Everyone and everything had changed except me. We all know you can't turn back the clock. That was, however, what I was hoping for. That was what I wanted more than anything.

And, that's exactly what I got. When my three besties arrived It was like we had never been apart. We talked. We laughed. Julie hele my Margarita for me while I munched on vegan snacks. Chris called me Jojo, and, Nancy sat next to me. What more could I have asked for?  

Julie, Chris, and Nancy are like family to me. All three have been my sounding board and my advocate. They have defended me. They had also kicked my butt when I needed it. 

The three of them saw some of my worst moments when I lived in LTC. They could have washed their hands of me. They didn't. I am so grateful.

The hours the four of us spent together on that sunny Saturday in April, were some of the happiest I have had in a long time. I felt a genuine warmth. A sense of belonging. 

I was back in room 502 for a little while. Memories like these ran through my mind.

Chris walks by and throws something into my room. "What was that?  I asked her.  "A ball of snot, " she replies. "You get right back in here and pick that up," I yell. I punctuated my response with the expected,  "Eww." Chris runs back into my room, picks up the aforementioned ball of snot, also known as a wad of crumpled paper, and walks out the door laughing. 

Julie is listening to me ask the same burning question for the hundredth time that week. "Where's the Oikos Greek Yogurt? Yoplait is gross." She never once tells me my repeated question is annoying to her. She explains to me for the hundredth that my fave yogurt has not come in yet. That same afternoon Juile asks me to play dietary bingo. Ugh.The things I do for my friends. I have to admit I had fun.

Nancy stops by my room before she goes home. We talk about my fear of getting a roommate now that I am on Medicaid.  "No, No, No. They're not going to give you a roommate." I know she is trying her best to keep me in my private room. I know her door is always open to me if there is a problem. If I just need to talk.  Knowing that makes me feel better.

I beg to differ Thomas Wolfe, sometimes you can go home again,

As I write this post I am wearing my sushi socks, I look over at my fridge adorned with photos of us. There are several more on the wall. Pictures of the three of us being goofy. Being us.

I love my sushi magnets. Who needs real sushi anyway? 

It was an awesome day with awesome friends. 

If I had not been a resident of LTC I never would have met them.

I would have missed out on their knowledge. I would have missed out on some new experiences. I would have missed out on their friendships

 

 

TODAY'S POSITIVE

I am excited to announce a new feature I will be adding to the end of every one of my blog posts from this point forward. It's called  Today's Positive.

I will write a positive statement about said blog post so that anyone reading my blog finishes a post feeling a little better than they did before having read it. 

I want my readers to take away positive vibes from my future posts. Even the ones that, on your first read, appear to be anything but positive. I have come to the realization that there is something positive even in the negative. I just have to look for it.

I added a Today's Positive statement at the end of my last post. You have to read the post again to find out what it is. Sneaky aren't I?

https://confessionsofadisableddiva.blogspot.com/2022/04/forgiving-myself.html 

I may just tell you something positive that happened to me.

 I parked my chair at the end of the street to watch the cars go by on the road in front of me. I met two sweet dogs who were on walks with their humans. I asked if I could pet them. My new friends' names are Riley and Sadie.   Their humans? I did not catch their names. They were very kind and friendly though. I met our mail lady too. She was smiling. Very friendly. All of this made my day

This afternoon friends are stopping by. Two friends I will be meeting for the first time. Until today we have only communicated via social media. They are friends of a friend of a friend of mine. Tomorrow I will see my nursing home besties for the first time in three years. I am anticipating lots of laughter.

Stay tuned for more of Today's Positive. I am excited. I hope you are too.