YOU HAVE THE POWER

Sometimes I find the truest posts on Facebook. Our words have such power/ Our words can bring comfort or tears.  They can tear down or they can lift up.

Your kind word, hug, or smile might be the only one that they get today. It's a cool feeling to know you were the reason someone smiled.

Being elderly or disabled can be lonely.  Leave someone better than you found then. A kind word from you might make all the difference. They will remember your words long after you have forgotten them. You have the power. Use it wisely.

 

ABLEISM BEFORE IT BECAME A THING

Merriam-Webster defines ableism as discrimination or prejudice against individuals with disabilities. 

I grew up before people with disabilities had rights. I grew up feeling inferior in this non-disabled world.  (I'm not gonna lie. I still do.) .

Read on to find out what life was like for me before ableism became a thing.

There was a small chocolate shop near the house where I grew up. There was one step to get in the store's front door. There was no way I could navigate the step in my powerchair even with assistance from my PCA. A store employee unapologetically informed us that that door was the only entrance into the shop. He did not seem to care that he'd lost a sale. I think he was glad to see us leave. (This incident occurred after 2010. This establishment had obviously never heard of the ADA.)

A disabled friend with CP  had been mainstreamed before mainstreaming children with disabilities became the norm.  I knew she was embarrassed by me. When a non-disabled friend of hers suggested that we all go out together our friend with CP adamantly refused to include me.When she was planning her wedding she told me, "You wouldn't want to be in the wedding anyway. It's a lot of work."  Again she chose her non-disabled peers over her disabled peer with CP. People with disabilities can be ableists too. (I know you are thinking that I should get over it. We were young. I agree. However, sometimes the hurt runs too deep. No matter how much I might want to let it go. I can't.)

Before I entered grad school one of the deans told my mom that the school did not want me but that my grades qualified me for admission.  The school had to accept me. When it was time for me to graduate that same dean told me that I would be last in line walking into the auditorium. I could not be in the line alphabetically with the rest of my class. This situation was soon rectified by a professor friend of mine. On graduation day I took my rightful place in line with the rest of the students whose last names began with G.

One of my internships was at a children's hospital. My boss's goal was to get the children's hospital, where I had been a patient to hire me. That hospital did not have a permanent social worker on staff at the time. When my boss learned that the hospital would not hire me, due to my lack of work experience she needed my internship after one semester. It was supposed to have lasted two semesters. For the remainder of my time interning at the hospital, I was given very little to do even when I asked for more duties. She gave important jobs to other students. I was left with setting up clinic appointments.

There was one job I really wanted. With the assistance of a job placement specialist, I went for it. I wanted to be a greeting card rep for a well-known greeting card computer from home. After learning that the rep for my area was retiring and that almost everything could be done on a computer, I called the current rep. She didn't let me say very much. She told me there was no way I could do the job. The woman was in her nineties. We'd never met. No matter how much I assured her that I could handle what the job entailed. I could not change her mind.

Do I think ableism will ever be eradicated? No, That's just the way it is. The ADA helps fight ignorance and discrimination against people with disabilities. They don't have to fight alone anymore. They can speak up. They can tell their stories. They can make people aware.

THE MANY FACES OF ME

I was not always the nerdy, mismatched, lounging pajama-wearing CPer you see in this photo who views the world via the screen of her laptop.  This woman dreams of traveling to faraway places. She dreams of fitting in. She dreams of being truly accepted for the awesome person she is.

There was a time when I dressed like this. My clothes matched. My hair was combed. My double-pierced ears always sported earrings.  This woman went to the mall, to the movies, and spent many hours doing volunteer work. This woman dreamed of making a difference. She wanted to help others with disabilities. She dreamed of changing the world, or at least, a small part of it.

This woman was an author. She dreamed of teaching children that it was okay to be different. She envisioned turning her children's book into a series. While that did not happen she fulfilled her dream of becoming an author.   https://busyworldofbiancabear.blogspot.com/

I don't show this side of myself very often. I have to know you really well. I have to trust you. When you have a disability, people make judgments about you, They make assumptions about you. This woman is funnier on the written page than she is in person. It's safer that way. She might look foolish. What would people think? This woman dreams of having one more day like this with her besties. A day to be silly. A day where no one cares. A day of laughing until she can't catch her breath. A ]day to just be happy. She'll even wear a feather boa.

 

WHAT'S RIGHT WITH ME?

 From the moment we are born until we take our last breath those of us with disabilities receive negative messages. Not only from those closest to us but from society at large. 

Back in 1957 when I was born I was not weighed until 2 days later. Was I too insignificant to be weighed right away?  Were they waiting to see if I would survive?  (My first negative message.)

When our parents finally receive our diagnosis they are told all the milestones we won't achieve in our lives. While we may not even be two years old, our time on Earth, however, has been filled with negative messages.

 Growing up we fight. We fight for a good education, a good job, a good life. As hard as we try most people still only view us as our disability. They don't see the person we are. 

If we are lucky enough to find people who see the real us we cherish them. We try to ignore that little voice in our head that keeps telling us, "This won"t last forever, you know. Why would such an amazing person want to be friends with you?" 

We're told we do too much. We talk too much. We cry too much. We do not know how to let words go that hurt us. We need to be quiet.

Those of us with disabilities have been told what's wrong with us our entire lives. What we need to change about ourselves to be okay with other people. We're told why people don't like us. 

The pressure of trying to conform is exhausting.  (I am not the only person with a disability who has voiced these feelings. I've read similar posts on social media .)

Instead of bombarding us with negativity, give us more positive messages.  One positive message could make a big difference.

  

BE A LITTLE FEISTY

People with disabilities are often ignored. Society thinks that if they ignore us we'll fade into the background. We won't make situations more complicated than they already are  It's almost like people are saying, "Be a good little disabled person and shut up" while patting us on the head.

But here's the thing. If we can't say what we want, need, or think we might as well be dead.

We do not have to be mean-spirited or disrespectful. We just need to work together to make the changes needed so that people with disabilities have the lives that they deserve. 

All of us, no matter how severe our disability is can make a difference. Society just needs to listen to us.

A little feistiness is a good thing. It shows other people that you're alive. It shows others that you are passionate about life as well as the issues that matter to you. 

I want to be remembered as that feisty lady with CP who never shut up. That feisty lady who advocated for herself until the day she died.

The one thing I learned from all of those blog posts I deleted is whatever point you are trying to make be sure your words come from a place of love and respect. Trashing people or places makes you look trashy as well.

"Fight for the things that you care about, but do it in a way that will lead others to join you."

Ruth Bader Ginsburg

Speak out. Be feisty. Don't shut up.

ONE CLICK THAT'S ALL IT TAKES

How am I perceived on social media?  When an unknown person reads my posts on social media or reads a post from this blog is the message they take from my words a positive one?

I can write whatever I want.,That said, I have to be careful. What I post affects not only me but the people around me. My words have driven people away. My negativity has cost me so much.

I am an advocate for change. The problem is the way I went about trying to achieve it.

Agencies,s like the one that facilitates my group home, as well as nursing homes, are businesses. I had no right to take my frustrations out on them by putting them in a negative light. . I bad-mouthed the facilities that were trying to help me. How arrogant and unappreciative of me.

I live with two other people. My actions affect them as well.

.Being a disability advocate is great. The way I did it was wrong. 

 This blog is not just about me. My posts affect a whole bunch of people.

I want to thank anyone who suggested I remove posts that were disparaging. You did me a huge favor. I know now that you were protecting me. 

I did not figure this out on my own. I am not that smart. I watched a video of actor RJ Mitte giving a speech on Youtube. He spoke about growing up with cerebral Palsy, Never giving into fear, and how with just one click people know everything about you. 

One click can either be positive or negative. I want my mouse clicks to be positive.

OH NO YOU DIDN'T

What's the most outrageous comment anyone has ever made to you?  Whatever the comment was I bet I can top it.  Don't believe me? Keep reading.

A little boy once asked me, "Are you dead?" It was a beautiful Saturday afternoon. I was out for a walk. I decided to stop at the greeting card store. There I was, minding my own business, pursuing my favorite greeting cards. Then I heard him. "Are you dead? I tried pretending I did not hear him. He just kept asking.

A child's curiosity about me or my power chair doesn't bother me. Usually, I find their questions about how fast my chair goes and why do I have to use my chair cute.  I hate when embarrassed parents try to shush their children or hurry them away. How are they going to learn if they don't ask? 

This kid's question, however, really rattled me. "No, I am not dead Do I look dead?" I snapped. (Yeah, I probably should've handled that better..) I rolled away as quickly as I could. I hope I didn't scar the child for life.

The owner of a Chinese restaurant asked my mom if he could try using acupuncture on me. He was sure he could cure me. My mother politely refused. (I will have the cashew chicken with a side of needles, please.) 

People tell me that they are sure that I could find a significant other If I put myself out there because there are plenty of "people like me". Say what? ]Oh no you didn't.

(I reply, feeling my jaw tighten and my teeth clench.)  "Do you mean people who wear glasses? Do you mean people with gray hair?  Do you mean people who write/blog? Or do you mean people who admire the artist Frida Kahlo?" 

Oh, I get it, you mean other people with disabilities. They are the only ones who will accept me. I should stay with my own kind. That's what your statement implies. That's the most insulting statement a person can make to me.

Throughout my life, people have assumed I was unable to read, assumed that I was mentally challenged. People are surprised if a man, who is not disabled looks in my direction. That is something to make a joke about.

People have said things to me that they would never dream of saying to a non-disabled person.

Why?

When is it going to stop?