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Disability, Struggle, and PRIDE
By John H. Baker
July 2021

Disability, Struggle and Pride

It seems nowadays there are so many causes and issues being discussed and debated. Issues of race, gender identity, equality, body image, workplace issues…and all of these are genuine and valid concerns that should be addressed.

But for me sometimes these discussions, though understandable and very necessary, can be overwhelming especially on social media,as well as traditional media. I have couple of degrees relating to media, so I understand how these things work, cycling in and cycling out..

Anyway, the weight of all of this along with COVID sometimes triggers bouts of anxiety and occasionally even depression (Yes, I know, yet another worthy topic falling under the general heading of mental health). These factors have contributed to my reluctance in discussing topics related to my disability.

As many of you know, I was born with cerebral palsy What you may not know is that doctors back in 1963 ( I realize it was the dark ages to most of you!) only called it Cerebral Palsy because they didn’t have a better diagnosis to fit my particular set of symptoms, so as it was once explained to me, there are three types of Cerebral Palsy; you have number four! I am not sure that statement was ever accurate, but it is what doctors told my parents at the time. But I am sure that I have always been different, even among people who are considered different already.

Whatever you called my condition, my mother had some very serious health problems during her pregnancy, that were expected to be fatal for both of us. It has been said that it is a literal miracle that either of us survived, but we did. Still, doctors held out little hope for me. In their defense, test and treatment options that are commonplace now did not yet exist in those days!
As medical professionals often did back then, the suggested my parents put me in a “ boarding school “ (code for institution) in Pennsylvania. We lived in New York at the time but that wouldn’t be a problem as my parents were advised it would likely be best if they didn’t see me again as I would likely be so impaired that I wouldn’t be aware of much. Mom has often expressed a wish that she could show those doctors the diploma conferring my Masters degree! Obviously my parents refused that option, but even that decision had to wait until they legally became my parents again.

It seems my mother’s hospital bills had maxed out my father’s health insurance, so I became a “ward of the State of New York” until the bills were paid as l was such a small baby (though Mom carried me to full term) I required hospital care for a full month.

I remember going into stores when I was very young. And I had just gotten my first wheelchair. Before that, I was either carried or pushed in a stroller. Even then, it was a modified “adult small” wheelchair. At that time child or “junior” chairs did not exist. Eventually I got what was called a “growth” chair.
Anyway, there I was in my chair. Other children would smile or wave. Some would simply look curiously…suddenly, their parents would pull them away, almost as if I was contagious! They may have been afraid the child would say something wrong but I’d much rather people, particularly children, ask questions! That’s how we learn about one another and dispel myths and misinformation.

My mother, Joann, tells a story about being approached by a woman in a supermarket. She was carrying me. And the woman asked me, “ Why don’t you get down and walk, so your mother can shop?” In her frustration Mom replied something like, “He would if he could…”
Apparently, the woman, embarrassed I suppose, fled the store leaving a full cart of groceries behind.

I read very early! And always had very high reading comprehension score, but Mom tells me that the first time she took me to the New York Public Library none of that mattered.
Sure, she had a library card and could borrow book for me. But I could read so she felt I could have my own library card!
But I was denied. At that time, though I could read almost any children’s book they put in front of me, I lacked the strength or dexterity to hold a pencil or pen. Therefore, I could not sign my name. Therefore, no library card. Fortunately, for us, the Monsignor of our Church, was also a member of the library board, so he pulled a few strings…I’m sure they are others who were not as fortunate.

(Side note: While I’m sure the Monsignor would have been very proud to have known about my Masters, He probably would have been less thrilled about my lack of dedication to the Catholic Church. You can’t win ‘em all!)

Honestly, the first time I went to the movies, it was “Mary Poppins” at the drive-in.
My first “walk-in “ was “The Sound Of Music.” as young as I was I remember a staff member just staring….and finally saying, “ let me get the manager…” or words to that effect….

Apparently, the manager explained to Mom that there was no place for a wheelchair in the theater… as putting me in the aisles would be a fire hazard. But if she could transfer me to a seat… he could lock my wheelchair in his office where it would be safe and bring it to us when the movie was over. I was young and very small. This was easy to accomplish ! We did not think much about it.

While movie theaters have improved greatly. Even offering accessible seating options in various areas….other types of theaters and arenas have not, with some exceptions of course…
Most available accessible seating, particularly here in the United States, is in the rear of the venue and / or quite far up in the crowd….with few other options unless you can transfer. Even if you are willing to pay for better seating, it is often simply unavailable because it doesn’t exist!

Our local theatre , the Segerstrom Center is one of the few that offers options, but I’ve visited many that do not! I will admit, that when we’ve visited Europe, we have had somewhat better luck even in 1988 (in then Socialist Budapest, Hungary) …. we had already already arrived in Budapest to attend the World Figure Skating Championships ( see more at my website JHBonline.net) when our tour operator, Barbara Cassella, informed us there was no such thing as accessible seating in the arena. I know, she could have mentioned that detail before we were there, enjoying the “welcome dinner!” But you didn’t know Barbara. She was certain things would work out one way or another. That time, she was right. A wooden platform was built at the edge of the ice surface with a ramp encircled by a red rope! And a uniformed officer to stand guard! Similar arrangements were made in Birmingham, UK in 1995 minus the red rope and an “arena host” was substituted for a guard!

The other difficulty that Barbara neglected to mention In Budapest was that the train transporting us to Vienna after the competition wasn’t exactly accessible either! Fortunately they were plenty of strong, young men in our tour group who were able to pass me through the window of the train and gently lower me down into a seat! I survived! It was actually a wonderful experience.

Back to educational difficulties during the mid 1980s I attended Suffolk County Community College on Long Island. My plan was to someday become a writer. It occurred to me that if I was going to write for stage and screen, I would not just be writing for audiences, but for actors as well. In order to familiarize myself with the actor’s process, I decided to take an elective called “Acting For Non-Majors.” It sounded perfect. I never intended to become an actor.

After our initial class, the instructor asked if I could stay behind. I did. This was not unusual!
Professors often wanted to speak to me to see if I required any note-taking or testing assistance, etc. But this time, before I could say a word, I was greeted with “ Perhaps you should consider taking another class…”
I was puzzled!
The instructor, who I will not refer to by name, continued: “There is no way to get you up on the stage. Even if we could I’m not sure you could speak the way an actor speaks, or move the way an actor moves…”

I was stunned! I think I just turned my motorized wheelchair around and left. I honestly don’t remember saying anything! A group of my fellow students were still hanging out in the hallway. They must’ve been able to read something on my face, although I wasn’t acquainted with any of them. Someone asked if they could help me. I told them what happened!

The other students asked me not to drop the class yet, and please attend the next meeting.
So I did. The instructor entered, and before class could begin, the other students rose from their seats. They said they were prepared to walk straight to the Dean’s office, if I was not permitted to remain, and receive the same opportunities as everyone else. They did not feel we needed to use the stage for activities I was involved with, but if it was absolutely necessary they would find ways to lift me and my wheelchair onto the stage, if I was comfortable, and if I chose to stay.

The instructor relented, and I stayed a few weeks! It was ok, but I could tell I wasn’t completely welcome. Unfortunately, halfway through the semester, my father suffered a fatal heart attack. One week later, my uncle, his older brother, (my Uncle) succumbed to the same fate.
All of the other professors were quite sympathetic and willing to work out plans for me to make up any missed assignments or exams, etc. The acting instructor was not offering me only 48 hours to catch up! It was only an elective.
It was agreed I could still receive a grade of “W” for withdrawal. That negotiation ended.
I had too much on my mind to stay in a class where I wasn’t learning anything anyway.

Of course, in fairness, I should mention that I was originally a student at the State University of New York at Farmingdale. I’m told it is now called Farmingdale State College. I referred to it at Farmingdale State Penitentiary.

I lived in the dormitory for two semesters. Unfortunately, finding reliable assistance was difficult as the Office for Disabled Students closed the day after I arrived due to “lack of funding.”
There were numerous problems which require an essay of its own. Suffice to say, I survived. I even made the Dean’s List both semesters. God knows how!
But things are getting better. Eventually, I finished my BA at California State University, Fullerton and earned an MA at Chapman University with wonderful support and facilities.

I have more stories and anecdotes, but I didn’t write this to make people feel sorry for me… or anyone else! I wanted people see, that in our own way, people with disabilities make up another type of minority group. We do not choose our disabilities, they are ascribed to us.
Sometimes, as in my case, we are simply born this way. Others acquire their condition thorough illness or accident later in life. But we never choose. Similar to the LGBTQIA + community, you will find people with disabilities in all ethnic, racial and gender groups.
And anyone could be one of us…yet we remain largely unseen and under represented in many ways….

Ive been very lucky. Ive had a wonderful family and incredible opportunities. But that is far from true for many people but it doesn’t have to be if we tell our stories.

We can help those who need support by creating visibility. Thanks, to my good friend Lance for reminding me of the importance, and the power of telling your story.

Pride means different things for different people. That is ok! I was a “poster child “ for United Cerebral Palsy back in New York during the 1960s and 70s. Many say we were being exploited but all I remember is the fun of being on live television from the Ed Sullivan theater, joining in as major celebrities of the era were performing their latest hits! In many ways, it was the best access to the public at large that we had! Maybe it wasn’t the best of circumstances, but we were being seen! It was a big step…

My point being, that progress and achievements are sometimes a matter of one’s point of view.
For example: I imagine most people would consider my Masters Degree to be my “greatest accomplishment.” As even Mom would tell you, I would disagree.
For me, my most cherished moment thus far, was serving as a judge for the 2013 Miss Nevada USA/ Teen USA competition.

I loved these events since early childhood. I never dreamt that I would ever participate in any way ever. I felt so much Pride because the Miss Universe and Miss Nevada USA organization showed confidence in my knowledge and abilities and found a way to include me and give me the honor and responsibility of such an opportunity.

So Pride is a matter of perspective and each one of us, no matter our circumstances has a right to take pride in ourselves!

Copyright (c) 2021 John H. Baker/ JHBonline.net