THE SWAN WAS EVERYTHING

credit Stephen Lovekin/Shutterstock

Model. Socialite. Fashion Icon. Anderson  Cooper's mom/
Gloria Vanderbilt.

There is a title she deserved. No one thought to give it to her.  I bet even she was unaware that she deserved the title of Disability/Inclusion Advocate. I would have given her this title.  Her jeans were different from the rest.
Gloria Vanderbilt

In the 1970s, designer logos were stitched on the back pockets of their jeans. Fine, my peers' who were able-bodied. What about me?  I watched the Calvin Klein and Jordache Jeans commercials feeling completely bummed out. I could buy their jeans, but I'd sit on the designer's logo. Gloria Vanderbilt saved me from being uncool.

Vanderbilt Jeans had a white swan stitched on the front pocket. That swan meant everything to me. It wasn't long before I was the proud owner of several pairs of  Vanderbilt Jeans. Black denim, royal blue corduroys,, blue denim with red piping down the side, and a silk shirt to match. I was finally cool.

Her signature fragrance came with her trademark swan on the bottle I used her perfume for several years.

I tweeted Anderson Cooper several years ago. I told him how much Vanderbilt Jeans meant to me. In hindsight, I am embarrassed, What was I, thinking? Anderson Cooper. covers news from around the globe and I sent him a tweet about jeans. As you might have guessed he did not reply.

If I could say one thing to Gloria Vanderbilt I would thank her. In my late teens and early twenties when I desperately tried to fit in, her jeans helped me feel not so different from my peers.

Gloria Vanderbilt. Socialite, Model, Fashion Icon, Painter. Advocate for Inclusion.  That's how I will always think of her.

Rest in peace, Gloria Vanderbilt. Thank you for making a difference in my life. The swan was everything.

https://variety.com/2019/biz/news/gloria-vanderbilt-dead-95-anderson-cooper-1203245335/

https://www.youtube.com/watch?v=cfbRneB9wcA&t=160s

ANYTHING IS POSSIBLE

Photo Sara Krulwich/The New York Times

 History was made on June 9th at the 2019 Tony Awards. Ali Stroker became the first person in a wheelchair to win a Tony Award  She won for her performance of Ado Annie in Oklahoma.

I was going to write about her background. I was going to tell you how a car accident when she was two years old left her paralyzed from the chest down. 

Ali saw her first Broadway show when she was in first grade. That show sparked her love of theater. Perseverance and the love and support of her family made it possible for Ali to achieve her dream of appearing on Broadway.

When Ali was given the role she was hired because was the best singer/actress for the part. They looked past her wheelchair. Her talent was what was important. The fact that she had a disability was not. I hope that her win is only the beginning. We need  to see more of the disabled community represented 

Vocational Rehabilitation has deemed me unemployable. I was told no employer would pay me for the skills that I have. I held a part-time job for sixteen years despite what Vocational rehabilitation told me. With the support of my family, my dream of publishing a children's book became a reality. I fought and succeeded in getting out of a nursing home.

Teachers never told me what I could do. They never encouraged me to dream. A lot of them probably thought I would end up attending the UCP day program. A teacher told my mom to keep me in high school for an additional year because "What is she going to be able to do anyway?" She did. It was tough to watch the kids I'd been in school with for twelve years graduate without me.

Interestingly enough that teacher had a son with cerebral palsy. After being in the day program for a while her son moved into his own apartment where he lived with the assistance of PCAs for many years.

Children with disabilities have so many more opportunities today than we did when I was growing up. They attend school with their able-bodied peers. No more "special" schools.

To a young disabled person reading this post, I want you to know It's okay to dream. Don't be defined by labels. Your disability is not who you are. You know what you are capable of. When you watch a video of Ali Stroker dream and believe. Work hard. Anything can be accomplished through hard work and determination. You may have to work twice as hard as anyone else. In the end, it will be worth it.

Thank you, Ali Stroker. You've shown the world that anything is possible. Congratulations.

THOSE THREE LITTLE WORDS

It has always amazed me how easily some people say those three little words. I Love You. I can't count the number of times people I have just met have told me they loved me. This statement is usually followed by the person telling me how amazing I am. I haven't quite figured that one out yet.

 Why am I any more amazing than any other human being? Trust me most people work a lot harder than I do. I hunt and peck on my laptop keyboard creating characters and blog posts. How hard is that?  A little maybe, but not amazing.

People say motivational statements to me all the time. I know when they're not sincere. I can tell by their tone of voice. It is as though because I have CP I deserve an award for just breathing.

Love is a very powerful and meaningful word. I have to feel a connection to another person before I will say it to them. I have to have a history with someone before I feel comfortable using the L-word. We have to have gone through some major stuff together.

Love is a positive, happy emotion.
I love my family, friends and as for food, SUSHI.

Don't tell someone with a disability you love them because you think it will make our day. Don't tell us we're awesome when we have not done anything special. We are just living our lives. Say those words after you have gotten to know us. Say those words when we deserve to hear them.

I just thought maybe you might need a little reminder. Don't use the L-word lightly.

You're welcome.

LET IT BE

I have tried to make people like me.
Did not work.
I give up.

I have tried to form relationships.
Did not work.
I give up.

I have tried to make people talk to me.
Did not work.
I give up.

I have tried to fit in.
Did not work.
I give up.

I have done everything I can. I tried changing to please others. That's what I do. People pleaser. Fixer. I want everyone to think well of me. I want everything to be okay.

I have asked to be included.
Did not work.
I give up.

I still have a big lesson to learn.
Let it be

Cher's mom Georgia told her, " If it doesn't matter in five years, it doesn't matter."
In 2024 the events happening in 2019 won't matter. They will be a memory. I will have moved on. To new situations, new friends new ideas.

I can't make people do anything.
I will just accept.
I will let it be.

MY PEEPS AT NHC

When I roll through the door Donna greets me with a smile. 
She knows that I am there to see...
My peeps at NHC.

Happy Hour means. music, fun,, and Margaritas. No one makes them like Lydia. Served in my own special glass.
Stacy, Angela, and Lawanda too.
The Activities Department is always doing something new.
My peeps at NHC.

I see the best dietician around. Hey Julie, I lost another pound.
My Peeps at NHC 

Well, well, well.
That's all I can say.
Chris is always there to brighten my day.
My peeps at NHC

Gail is a great nurse.
She makes my day.
Cuz she has a costume for every holiday.
My peeps at NHC.

Tiffany's the nurse who calls me Trouble.
She says it with a wink.
She knows I am not as much trouble as you might think.
My peeps at NHC.

Angela's one of the busiest nurses around.
We're Facebook friends.
That's where we can be found.
My peeps at NHC

Annie and Florence are great CMTs
Guess  What? They really do miss me!
My Peeps at NHC.

I have dinner with Korri, Rita, and Suzanne.
They keep me in the loop.
I rely on them for the NHC scoop.
My peeps at NHC.

If I have forgotten anyone that was not my intention.
Too many of you to mention.
 My peeps at NHC.

Thank you, Meghan, for saying the door is always open.
If I couldn't see my friends I would be heartbroken.
My peeps at NHC.




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I FELL DOWN THE RABBIT HOLE

My mom loved to tell people the story of my birth. She told a salesperson at Macy's once. I was mortified. In my head, I was imploring her to stop. We were just there to buy Christmas socks for my brother. How had an innocent trip to the mall gone so wrong?  

Imagine having a guy you liked over for dinner only to have your mom launch into her story. All I heard was, "Joanne was born at six and a half months. She was so small the hospital didn't weigh her when she was born. She looked like a spider monkey, all arms and legs.". What an icebreaker. MOM, PLEASE STOP!!

I want to write my memoir. Not my autobiography. If I wrote my autobiography I would have to include the details of my birth as well as the events that preceded it. Boring.

Memoirs have a reoccurring theme throughout them. The events written about are linked together by that theme Many of you may have already known the difference between an autobiography and a memoir. I didn't. My friend, Jenny. cleared up my confusion.

All of my life, my mind has given me the message that I am just like everyone else. CP kept my body from receiving that message. My mind and body messages not being in sync really screwed me up sometimes.

Throughout my life, many of my experiences have left me puzzled. If I am just like everyone else, as my mind tells me I am. Why is this (insert a life event) happening to me?

I think this image of Alice falling down the rabbit is a good analogy for my life. For as long as I can remember, I have been fighting the conflicting messages that my mind and body have sent me. Each major life event made me feel like I had landed in a strange new place. A place, in many instances, that my mind told me I did not belong.

The theme of my memoir is how I have fought so hard to prove I am like everyone else. The truth is I am not. I never will be. I need assistance with ADL. That fact won't change. However, I will keep fighting.

The working title of my memoir is. I Fell Down the Rabbit Hole, My Life With CP.

LIVING OUR BEST LIFE

Whether it's giving flowers to our neighbors in celebrating the agency's community day or hosting a Memorial Day barbecue for the residents of another house.
The agency wants us to...
Live our best life.

Supportive, caring dedicated staff/.

Whatever we need to make our lives better. staff here does their best to provide.

The agency wants us to...
Live our best life.

Hugs are given when needed. 

The staff will answer a question again and again. 

It's a game. 

If the game brings a smile to a client's face. That's all that matters.

The agency wants us to...
Live our best life.

Caregivers, cooks, housekeepers chauffeurs, and more. 

The staff does it all. 

The agency wants us to...

Live our best life.

The staff loves what they do. 

That's the secret. 

If that love were missing life here would not be the same.
the agency wants us to...
Live our best life.