SHE'S CRAZY IN A GOOD WAY

What can I say?
Tiffany's crazy.

In a good way.

She makes me laugh while providing my care.

Very few can compare.

Tiffany's crazy.

In a good way.

We make videos and send them.

Just to say hey.

Do you think we'll be on Tic Toc someday?

Tiffany'scrazy.

In a good way.

We go out to eat

Applebees is a fave.

About the appetizer platter.

Tiffany raves.

    Yup.Tiffany's crazy.

In a good way.

She makes a mean pasta dish.

It's far out.

She even brings me Brussels sprouts.

Tiffany's crazy.

In a good way.

She's taken me bowling.

To Lone Elk Park too,.

Tiffany showed off her driving skills.

It was quite a thrill.

Tiffany's crazy.

In a good way.

The road was narrow.

As we let an elk family pass.

Good thing we didn't run out of gas.

Tiffany's crazy

In a good way.

My rhyme's almost done.

It's been fun/

I've no more to say.

I appreciate you Tiffany.

You're crazy.

In a good way.

 

THERE WAS LAUGHTER

 Yesterday was an awesome day.  There was laughter here.  The staff talked to me. We joked around. I watched part of a  Medea movie with my staff. No one was negative toward me. The vibe in the house was chill. I was happy.

Wanna know what the coolest part of the day was? I went bowling!

 In college, I was on a bowling team of adults with disabilities. We bowled every Sunday at the old Arnea bowling alley in the city of  St. Louis. I loved it. It was the one thing I could do with minimal assistance. (Well, I can play the slots by myself since they got rid of that pesky arm and replaced it with a button.  I digress.)  

I used another player's bowling. ramp. I had a powder blue bowling ball with my name on it. We had a bowling banquet every year. I won several trophies.

I bowled a few times last year. I did not bowl during the winter. I hope i can go bowling more often now that spring has arrived. The weather is gorgeous.

I am fortunate to be a client of this agency. If I lived in a nursing home I would not be able to go bowling. In case you are interested I bowled two games. My score was 102 in the first game. I got three strikes.  My score in the second game was 91. No strikes in that game. It's all in how you position the ramp. I appreciate that bowling alleys have ramps available now.

My dad was a bowler. It's something we have in common. I wish he could have seen me bowl. I feel a connection to him when I am bowling.

I got a Greek salad from Panera on the way home. A perfect way to cap off the day. Thank you, Niejsa for a great day!

HEY MOM! THE DANCING PEEPS ARE ON

My mom died fourteen years ago today on March 30, 2010. Her funeral was the day before Easter. I wanted to write a post about her. I did not know what more I could write about her than I already had. 

The things I considered about writing could have been happier. I wanted to write a funny post about my mom about Easter. A post about how I could exasperate her in a good way. At least I like to think so.

I love marshmallow Peeps. Not so much eating them.  Marshmello and pure sugar. Now there's a combo for you. They are so cute. I would buy them just for their cuteness factor. I would eat them after Easter when they were hard, still sweet, but like a rock.

They made a hollow chocolate egg with a Peep inside for one year and one year only. I saw it in the store and begged my mom (What's that? My age at the time is not important to this post. . How rude! Moving on.) to buy one for me. She did. 

The egg stayed in the box on the kitchen table for a week Every day I would look at it as though I was expecting the hollow chocolate egg to break free of the box, roll onto the kitchen table causing the egg to crack open allowing the yellow Peep to hop out and tweet out a  "Happy Easter" to mom and me.

Nothing so dramatic happened. On Easter Mom cracked open the egg. The little yellow peep looked so cute sitting in the bottom half of the egg. I ate the top of the egg. I didn't want to eat the bottom half with the Peep in it. Eventually, I did.

I loved the Marshmallow Peeps. I really loved the Dancing Peeps commercial circa 1999.

I got a kick out of this commercial. I would giggle and call my mom with urgency causing her to think something was wrong. She'd make it into the room as the commercial was ending. "Oh for heaven's sake. Is that what you called me in here for? I am in the middle of cooking dinner." If we were watching TV together she would shake her head when the commercial came on. Mom liked the Peeps commercial and the cute Peeps candy. Or maybe she enjoyed seeing me get such joy out of all of it,

"Hey Mom! The Dancing Peeps Are On."

Rest in peace, Mom. I love you.

Have a great Easter everyone. Get some Peeps.

DEAR AMAZON PRIME

What has happened to our relationship?  What have I done wrong? I have been a loyal customer of Amazon for years. 

I received my first birthday gift card many years ago  I opened an account even though  I was nervous. (You must understand that being nervous about trying new things is how I am. It's my MO. A risk taker I'm not.)

A friend gifted me Prime several years ago. One yearly payment and BOOM not only could I shop online, but i could watch movies and get free shipping. Prime was so cool. You were so cool, Amazon. 

The coolest thing?  I could do everything myself with just a tap of the keyboard mouse on my laptop. I was independent. No assistance was required. You did that for me Amazon. I have cerebral palsy so, for me, that meant everything.

When I realized that I could get Prime for half the monthly price of fifteen dollars because I received government assistance. I jumped (pun intended) at the opportunity. Prime for under eight dollars a month? I was in.

Everything was fine until late last year when you began charging me the full monthly rate for Prime instead of the EBT rate. I was certain this was just a one-time error. that could be easily fixed. It was. Customer service refunded. me the overcharged amount. The end. Oh, Amazon how wrong you are.

That was just the beginning of lengthy online chats. I was told the problem was fixed time and time again. I was told I would never be overcharged again. Month after month it kept happening. 

Customer service told me I had two accounts and someone was using my information to get Prime for free. I was told to get a new debit card. I am waiting for my new one to arrive. After canceling my card customer service told me, after double-checking, that I did NOT have two accounts. ( I had been telling your customer service agents this over and over.) and everything would be okay. I would receive Prime at a reduced rate once I got my new debit card.

How could you do this to me Amazon? I thought we were friends. I have always been loyal to you. Everyone keeps telling me to give you up. To not add me new debit card to my account. How can I give you up when you've given me the gift of independence?  When packages arrive it's like Christmas You have brought me so much joy. 

I love your movies. (Thanks for the Frida Kahlo movie. I have watched it on Prime before. I am so happy it is available again.)

I am frustrated. I still love you Amazon. I am not ready to give up on you.

Sincerely,

Your loyal customer in STL.

 

CHOICES

Yesterday was Legislative Day in Missouri. I did not make the trip to the state capitol in Jefferson City to be part of a rally or speak to legislators. That's just not my thing. If it is yours, great. That does not mean I don't care. I do. 

People with disabilities deserve choices. Those of us living in group homes and on Medicaid have limited choices.

We need improvements in what is considered accessible housing.  This means wider doorways as well as wider hallways.  Any ramp should be a gradual slope/ I have tried to go up or down ramps at some houses and if someone had not assisted me my chair would have fallen off the ramp.

All ramps should be checked to make sure that they meet safety standards. There needed to be more room for me to drive my chair around in some of the houses I have visited. 

Wheelchairs and lifts need a lot of space. Accessible housing should be accessible to everyone.

I know this is discriminatory. I know this will never happen. I am going to say it anyway. I believe no one under the age of twenty-five should be hired to be a caregiver. They are too self-involved. They walk with me (sometimes ahead of me) with their head down looking at their phone.

I have experienced negativity from my caregivers I have experienced a lot of positivity. The positive experience outweighs the negative experiences. Mutual respect between a client and their caregiver is a must. Listening to one another is important as well if the relationship is to a healthy and lasting one.

I have been deemed unemployable by the State of Missouri on three separate occasions. I have been told by the state of Missouri that no one would pay me for the skills I have. I am a writer. I have an MSW. While I have no interest in going out and working, (I held a part-time teaching position for sixteen years) more work-from-home jobs are needed. 

Since COVID-19, many people are working from home. Why can't I? Why did the State just bail out on me?  My vocational rehabilitation office could have tried harder. M counselor should have tried harder. I refuse to be humiliated like that again. The third time was definitely not the charm for me.

If I remain in my situation and my Sara Lift breaks down Medicaid will not pay for it to be replaced. The lift I am currently using was donated.

If I go to a long-term care facility and my powerchair breaks down there is a strong possibility that Medicaid will not pay for a replacement powerchair. Leaving me dependent on others to get around. Mobility aids are essential to someone with a disability.  

I have waited months for my chair to be serviced. I waited months for my new chair to arrive.  Mobility aides should be regularly serviced. Without my mobility aids my quality of life would be nil. The fear of losing one or both of my mobility aids keeps me awake at night

Because I need skilled nursing care retirement communities won't accept me. Retirement communities should offer skilled nursing care. The really nice LTCs either do not offer skilled nursing at all or the Medicaid beds go to a resident already living there, or there are long waiting lists for the beds available.

When I speak of LTC I do not mean warehousing. I visited the Medicaid floor in a nursing home where the entire floor reeked of urine. The residents were not engaged. They looked like zombies. That is warehousing. That is inhumane

.

Medicaid nursing home residents deserve their own rooms. Don't penalize us based on our ability to pay. Yeah, I know, that's how the world works. That's why my dream of living out my days in a private room, with an adjoining patio where I could sit waiting for my three o'clock cocktail will never happen. I require too much care. It would cost the State of Missouri too much money for this to happen.

A Queen Bee (as in the movie) Golden Girl on Wheels. That would be so rad.

There is no point in a Legislative Day. There is no point in rallying for our rights. I love my country. I have, however, lost faith in our government both at the federal and state level. Until our lawmakers are directly affected by all the issues that I have mentioned. Nothing will change for people with disabilities.

To those in power. To those who pass bills into law, i have one final message. Wake up. Make changes now. In the blink of an eye, it could be you. Give us the choices that you would want.

WE ARE MORE THAN OUR BOOBS AND BUTTS

Yesterday, on International Women's Day, I was invited to Hooters Restaurant to celebrate my housemate's birthday.  I had so many feelings and emotions about being invited. I am the only female in this house. I like my housemates and their staff. We all get along very well. A lot better than I had ever thought we would.

I am embarrassed to admit that the first thing out of my mouth was not a thank you for inviting me as it should have been. The first thing out of my mouth was, "That restaurant degrades and objectifies women." It's not my finest movement. I regret saying it. I thought I could go. But in the end, after seeing. Hooter's Facebook page with a young woman who had the honor of being "Miss March" I just could not see myself going. Even the name is offensive to me.

Being a waitress is hard work. Maybe they are there to pay for college or graduate school. If I had a daughter I would want more for her than the honor of being Miss March. I would not be happy with her waitressing in short shorts and shirts where her boobs are partially exposed even if it was just a temporary situation. What happened to dignity and self-respect?  

Women have worked too hard to show that we are more than just boobs and butts. We have brains. We have ideas. We have opinions. We can do tough jobs,

Women work twice as hard to overcome stereotypes. Women with disabilities have to prove themselves worthy and equal over and over again. A restaurant like Hooters objectifies women. What messages does it send to young men?

I keep wondering what Ruth Bader Ginsburg would say. What advice would she give me?

I decided not to go because my housemate deserves to spend his birthday however he chooses. I do not want to be a Debbie Downer. I do not want to ruin his celebration. This is his party. This is his day. I truly hope he has a great time

I will step down from my soapbox now.

SPIRITS HAVING FLOWN

Artist Mitchell Toy

When Stephen Hawking died in 2018 the disabled community was in an uproar over this drawing of him entering Heaven. Another realm in the universe. Whatever your belief is. His body ceased to function. His spirit moved on.

The disabled community deemed this drawing ablest. I am not sure how anyone could negatively perceive this drawing I think this drawing is beautiful. 

I was embarrassed in 2018 to be part of a community that would condemn it and the artist who drew it.

When I die I won't have  CP anymore. I will not need caregivers/ I will not need my powerchair. I will not need my Sara Lift. I will not need to sleep in a hospital bed. I won't even need glasses.  I will be able to leave all of the people and things that assisted me in my Earthly life behind. That is what this drawing represents. Freedom. 

Ablest? I don't know. Ten people could look at this drawing and give ten different interpretations of it. If someone chooses to see this drawing negatively then I guess it is ablest. For me personally, this drawing represents positivity and hope. 

Allison V Thompkins, Ph.D. https://www.allisonvthompkins.com/blog/ writes about disability and spirituality. In addition, she holds a Ph.D. in Economics and has authored her first book on disability and spirituality. She has cerebral palsy and loves the color purple. 

She believes that we are spirits.  So much more than our disabled body. So much more than our outward appearance. I like this idea. It gives me hope as well.  If only people could get past our disabilities and the equipment that assists us. If only people would take the time to see our spirits while we are here on Earth. Well, that would be too awesome for words.

My mom and I used to have discussions about this. She would say, "I know my body is going to die. My body is just a shell. What happens to me?"  She would then point to her chest for added emphasis. Now she knows. I hope she is doing all the things she never got to do in life. The biggie? Travel to Germany.

I consider myself a spiritual person. I  want to learn more about spirituality and how it relates to disability. I want to improve my relationship with God.  

Dr. Thompkins lives her life with Faith. My Faith is a little shaky.  Not my belief in God. I know He is with me. It's my faith in people that's shaky.

I pray for unity 

I pray for positivity.

I pray for acceptance 

I hope that people will begin to see our spirits. Not just our disabilities. 

Cuz there is a whole lot more to me than spastic limbs and a powerchair.